Hodge Podge: Finding Normalcy Post-Hodge

Fished my wish

2009-12-20T15:57:00.003-05:00

My oncologist says it is fine to have one CT scan per year now. We are doing well and there is no need for unnecessary radiation in my body. She said there is a recent study that too many X-rays can increase one's chance of secondary cancers. The magic number "they've" come up with is 15 in a lifetime, then, look out. I've counted 8 scans with cancer alone. Don't know how many I had before and predict 5-6 more in follow up. Not too worried, however, because I am already at increased risk for secondary cancers from radiation therapy. Although, "increased risk" is an ambiguous phrase. At any rate, I am happy to be cutting down to one per year.

Happy Holidays to all!

Latest CT Scan is Clean Again!

2009-12-10T19:15:00.003-05:00

I am beginning to sound like a broken record. My December CT scans look just like previous CT scans - no changes - and that's good.

We were off to a good start when I only needed to be stuck once for the IV. That hasn't happened since I began chemo. It wasn't a clean stick, but I'm not about to be fussy given my track record.

I will be going to my oncologist appointment next week. Once again, I don't really see a need, except that I need her to tell me I can now get one CT scan a year. I am at the 2 year clean point and I think that earns me a reprieve.

Canceled my Oncologist appointment

2009-08-28T20:55:00.002-04:00

I was supposed to see my oncologist yesterday for a check up. I didn't see the sense in spending the money. I've had several of these visits now and I can do all that she does myself! She asks me questions that I always answer "no" to and she feels my lymph nodes and spleen. I can feel my own lymph nodes and know by now what I'm feeling for. I'm much better at knowing my body and assessing my condition post cancer that I feel like I would catch anything she would in an appointment. Obviously, if I had concerns I'd go see her, but I don't. It can wait until my 6 month CT scan in Dec.

Friends have gaped at me when I tell them I've canceled my oncologist appointment and broke the traditional protocols. But, this is exactly what is wrong with our health care system. Doctors and hospitals over treat because financially it is in their favor, and we, the patients, are too afraid and/or ignorant to question them. It's only a $25 co-pay for me, but it's $300 for my insurance company. While I have no warm feelings for insurance companies, it's not fair for them to pay for something that is unnecessary. Their costs go up which in turn means my costs will too. I give them way too much already, thanks.

I am not afraid or ignorant of relapse because I've been through it once, right? I'm knowledgeable about lymphoma, but an expert on my body, which a doctor is not. I trust my judgement. The CT scans on the other hand allow us a view of the inside that neither I, nor my oncologist, can monitor. I do take those seriously. Again, if the scans are clean, I shouldn't need to make an appointment and see her. A phone call with the good news should be enough. If the scans are concerning, by all means make an appointment to discuss options face to face.

Sailing vacation shortened

2009-08-24T09:40:00.003-04:00

I dropped off one sick Sadie with my parents last Tuesday in preparation for our sailing vacation on Wednesday. She was on the mend actually, but it worked too well and her bowels swung to the other end of the spectrum. She went days without a BM, but on the third day we rejoiced.

That's not the reason we aborted our 4 day vacation on the 2nd day, though. There were several phone calls back and forth about Sadie's condition, but ultimately we knew she was in good hands and my parents would do everything they could for her.

We came home early due to the gloom and doom forecast about Hurricane Bill. They were talking big seas on Saturday and rain and thunderstorms likely Friday night through Sunday. Naturally, being prudent mariners, we decided to stay closer to home so we could be in on Friday. As it turns out, there was no rain on Friday night and Saturday was gorgeous. Seas did lump up on Sunday, so we would have wanted to be in no later than Saturday. Frustrating.

The two days we had were gorgeous, however. Wednesday night we had a great sail over to North Haven and picked up a mooring. We met some friends who live there for drinks and dinner at Nebo Lodge. Fantastic food and atmosphere! Would highly recommend a meal or a stay there. thinking about going back for our one year anniversary in October.

Thursday was still and hot. We circumnavigated Deer Isle and ended up at the top (or bottom. I can never get this orientation right.) of the Eggemoggin Reach in Buck's Harbor that evening. We motored most of the way and sailed the last bit under the bridge. This is a famously warm harbor for swimming, but we were shocked just how warm the water was there that afternoon. It was 73 degrees a passing boater told us! So, we staying in swimming, bathed, and floated to our hearts content. We had tacos for dinner and several schooners came into the harbor, so we bummed dessert from the Mercantile. Dennis' friend is the captain.

Friday morning was so foggy. We lounged around making bacon and eggs for breakfast, played a game of Rummy, rowed ashore to visit with the owners of the marina there (also friends of Dennis'). By 11 o'clock the fog was persisting and remember we thought we had to be home in Rockland this day, so we set sail into the gray abyss. There was a breeze, then there wasn't, then there was....until we got close enough to the shore of North Haven. Then visibility improved and we got the hottest, most tropical breeze. It was very unusual, so we thought for sure this must be Bill's influence, reaffirming our decision to high tail it home. Eventually we had to leave the shore and head out across the bay. the fog grew thicker and the breeze cooler. As we approached Rockland, the radio was alive with vessels giving security calls so we all knew how much traffic was out there and where they all were. We heard fog horns of varying strengths intermixed with the distinct blasts from the two lighthouses at the mouth of the harbor. There were ferries, cruise ships, and other sailing boats all navigating into or out of Rockland with us. At one point we could hear voices, but could not see the vessel they were on! Sailing in fog certainly keeps you on your toes.

We pulled into the south end around 5:30-6pm, pulled all our wet stuff off the boat, and headed home to our warm, comfy bed. We both fell asleep on the couch that night. It was a good vacation even if we did listen to the weatherman and he was wrong. Better than not listening and he was right.

Finding Facebook

2009-08-04T08:34:00.002-04:00

Recently I was coerced to join the famous social networking site Facebook. Didn't want to, but glad I did. I can see why it is a runaway success. You get to be a voyeur into your friends' lives, update your friends and family quickly and easily with just a couple lines of text, and you choose to talk or not. Talking is generally one liners or very small paragraphs. No, conversations are not deep or detailed, but it's better than a year of silence amongst friends because time gets away from us or we never have the time for a 2 hour "catch up" conversation.

So, that's where I've been. Facebook is the new blog. Friend me and get information faster than here. For instance, my sister had a baby girl five days ago. It's been all over Facebook with photos and details from minute one. (Melanie and Sean are avid FB users.) Her name is Isabella Deni Rodriguez and she weighed in at 6 lbs. 13oz. and 19 inches long. She is healthy and happily at home now after a false positive at the hospital for a bacterial infection that kept her there overnight while Mommy and Daddy went home. Mel said it was the worst night of her life to have to leave Izzy.

Last night we Skyped with the Rodriguez clan in NJ so we could see her "in action". She made some faces when Sean played with her mouth and opened her eyes to sneak a peak only once in 45 minutes. Otherwise she was still and sleeping, but fascinating to watch, nonetheless. I am just smitten, I guess.

Dennis and I are well. Arranging financing to do an addition this fall. we'd like to build an attached mudroom & garage. Half of the work we'll be doing ourselves. I am still dog walking and pet sitting, Dennis is working at SPS and as captain of a schooner in Boothbay Harbor two days a week. that last job keeps him sane. We've been daysailing on our boat, but itching to do an overnight. There's just no time off for us! However, we are hoping to take a short sailing vacation August 16 - 20. Then, we are going to NJ to see the precious girl over Labor Day.

Take Care everyone and really, there's more stuff to fill the gaps on FB.

She's Clean Folks!

2009-06-01T19:10:00.002-04:00

Sis has been super busy with work (running a successful business will do that to you). She hasn't had time to update her blog in eons, so I figured I'd take a moment to post a very important announcement: Her latest scan's CLEAN!

I'm hoping she gets a dog transport gig that'll bring her down to Connecticut in a few weeks, because then she said since she's so close, she'll visit me, too!

She and Dennis have been planning their new garage and mudroom project and last weekend they attended a healthcare rally. Good stuff.

Here's hoping you all are doing well!

in brief

2009-02-17T09:27:00.003-05:00

Hey there. Really quickly while I have a few moments - a brief update. My dog is still cute. Business is very good, especially this week, with school vacation. Not getting to snowboard as much as I'd like. But that's what Montana is for, I suppose. We are going on this Montana vacation in two weeks. Doesn't seem possible because I am so focused on what needs to happen right now. We keep hearing great things about Bozeman. I know it'll be awesome.

Dennis is still at his job, still not liking it. But, he's been more on the ball about looking for a boat. In fact, we drove up to Addison, Maine last Friday to look at a boat in progress. It is far away from being a boat, but it has frames and planking has begun. You can get a sense of her size and her size is good for running a windjammer business. It's just such a huge, expensive proposition and the seller is asking too much for it as she is. I don't care if we don't find the right boat right away. I'm just grateful that Dennis is making these motions. At least I know he really is thinking about his/our future and being ambitious.

My granddad is turning 90 this month. My sister's baby is the size of an avocado. That's about all the time I have folks. Sorry for the abruptness. As always, I'll post more ... uh, later.

destruction & construction in NJ

2009-02-04T19:57:00.003-05:00

I've just gotten home from a long weekend at Sis's house in NJ. It was my working vacation - my RENOVA-CATION, if you will.
I'll explain, but first, we need to take a few steps back.

My sister and her husband are pregnant! I have not been holding out on you. I was held to secrecy against my will until just recently. She is in her second trimester and baby is doing great. So is Mama. Lucky woman did not get morning sickness. We are affectionately calling the baby "tadpole", still, even though he/she is now much bigger than a lime. It's just kinda stuck. Dunno why.

So, that said, Mel and Sean are doing some home renovating to make room for tadpole. They had this sunroom that was a 3-season porch at best. It was their intent to make that into a true living space and move the office. Then the office could be the guest bedroom, and the guest bedroom upstairs would become the baby's room.

So, Dennis packed up the Mazda with tools, vacuum, and guitar and we drove down to NJ last Friday night together. We arrived at 11:30pm. Started in on destroying the room the next day. It went well except for the rotten wall we discovered from water and termite damage. There were plants thriving in the disintegrated wood dust of timbers that were no more. Nonetheless, we felt accomplished and sore by the end of the day.

Sunday, we rebuilt that rotten wall and installed one of the four windows. It took all friggin' day. That was a bit disheartening and just like that we were off our schedule. But that was the worst wall and perhaps we could make up time on Monday.

Melanie was home with us Monday and Tuesday. The news got worse on Monday when we moved around the corner and discovered more rot and that the windows were all a bit too big. They were special orders and we HAD to make them work. Another day, another window.

Tuesday was my last day there and I only had unit 1pm. I had to catch a flight out of JFK for Portland at 3:50. Good news was that each successive wall was less rotten and less of it needed replacing. Bad news was that we were hoping to not touch the exterior shingles and it looks like they will be replacing all of them. By the time we removed shingles to fix rot and to fit the big windows, most of them were off anyway. Oh, and it was snowing on Tuesday. But, whatever, Dennis and I put all our windows in on cold, snowy days.

Miraculously, we put in the remaining two windows before 1, just barely. Melanie made us all sandwiches and we had a nice picnic in the car as we drove through the city.

Dennis is still in NJ plugging away at this renovation. He is way behind schedule and will likely be there into next week. It's a much bigger project than any of us imagined, but it will be a bright, cheery, toasty room when it is complete. Most importantly, it won't be rotten and falling down. At this point, it is sturdier and more water tight than it has ever been in it's lifetime. Dennis said that an actual contractor would have advised them to tear it all down and start the room over.

So, I'm batching it this week. Just me and the dog. I'll like it tonight, but I'm sure I'll miss him by tomorrow.

Happy New Year

2009-01-07T09:28:00.005-05:00

Did the holidays seem to last a long time this year? I don't mean the retail push of Christmas in October, but the actual days we celebrated. No complaints here. It was great to be able to visit both families and spend several days with my sister and her husband. There was a warm up in the Northeast with rain and fog, so we spent our time indoors eating, watching movies, and playing games (Dance Dance & Scrabble). Fun stuff!

The New Year was fairly quite for us. We did go to a New Year's Eve party, but in typical Candace and Dennis fashion we called it a night before midnight. The party was lively, good food, and we talked extensively about skiing with a couple from Bethel. Alas, it was not enough to keep these fogies out all night. Besides, I was "working". We were taking care of a dog in our home for the week. So, we came home to the dogs, popped open a bottle of champagne that we couldn't remember when we got it or why, and toasted in the New Year on our sofa with the TV on. It was freakin' freezing (wind chill minus!) and we felt so sorry for the poor saps in Times Square. What on earth possesses people to call that fun?

The dogs were having their own New Years Eve celebration with some rowdy play fighting. Here's a shot of them just before midnight when on normal nights they are dead asleep.
Now it's back to the daily grind. We had the wheel bearing go on our Mazda while it sat for a week over Christmas. Because of the New Year holiday, it took over a week to get it repaired. No biggie. We managed just fine as a one car family. I enjoyed the routine of taking Dennis to work and picking him up.
I got my first ever facial. It was very relaxing until she started picking. "Extractions" they call it in the biz. Apparently I haven't been drinking enough water which causes some skin issues. I already knew I wasn't drinking enough. I could feel it elsewhere in my body. My day gets so busy sometimes that I don't have time to sip the water I bring with me. So, my number one resolution for 2009 is to hydrate more.

The pellet stove contributes to the dryness in the house. We are burning pellets primarily for heat because it is better for the environment - cleaner emissions. With oil prices down, It's not so much cheaper like it seemed it would be back in the summer. You'd think the pellet prices would fall as well, but so far we haven't seen it. Here's a bad photo taken with my computer's camera of our lovely stove. She's such a part of our daily lives, I think she needs a name. What shall we call her?

I hope everyone has a happy, healthy 2009 and that you've all made your new year's resolutions/goals. It's good to have goals, big and small, to strive toward. Never stop experimenting with bettering yourself, your life and the lives of those around you.

Pics

2008-12-12T20:16:00.005-05:00

Here's an update through pics
Dennis after blowing in insulation in our attic. Note the fibers all over his face. I looked much the same with black in my nostrils.
The cute couple
Our tree this year

Rub a Dub Dub - I'm Clean!

2008-12-12T08:37:00.003-05:00

Merry Christmas to all! Christmas came a little early for my family this year and gave me the gift of peace as the latest CT scan showed no nodes whatsoever.

They call it a "wet" read of the scan because there is no formal report and it is a quick glance by the radiologist, but good enough to tell the patient so he or she is not worrying about the results for days on end. I did not know they could do this. I had my CT scan at 8am and they do a wet read so I know the results by my onc appointment at 10am. Same day! I'm upset they don't automatically always do this for patients. It's just the humane thing to do. Especially if there is no disease and no specifics need to be looked at more closely.

In theory, the wet read was supposed to have been done between my CT scan and the scheduled onc appointment. In reality, after I wait 30 mins. to see the onc, she comes in and asks, "Did you have a CT this morning?". Obviously, she has no results, and I bet Dennis while we waited that this exact thing would happen. Do I know this inefficient system or what? I can still say AARGH, though!

So, we waited some more while she called the radiologist, who had not even looked at the scan yet. We waited for the radiologist. I had to get back to work. As we were about to leave and just have her call with the results, the radiologist called back. Okay, it was worth the wait, but I can still say AARGH.

At least they took my blood for labs from the CT scan IV so I didn't have to be poked twice. That, of course, was my idea. It was bad enough getting the IV. My worst IV experience yet. Five holes in my arms and three different people trying. The CT techs NEVER get it. I should not let them even try anymore. They always call in the ER nurses. This time two of them.

Chuck was my hero that day. Just when I was ready to cancel it all and say I'd come back after I've downed gallons of water, he was in! He tapped a new vein I'll have to remember for next time. The old standbys seem tired and used up at this point. I don't help matters because I get so nervous that it's going to be a bad experience, I'm sure my blood pressure drops which makes finding a vein more difficult, and ultimately a bad experience. A self-fulfilling prophecy. Don't have to do it again for 6 mos. Yeah!

Funny thing is, at the hospital, we ran into Dennis' aunt and cousin whom he hasn't seen in 18 years. She was getting several scans and tests for her back pain. Wishing her best of luck.

As sister said, we are rejoicing with those who are celebrating being cancer-free this Christmas as well as thinking of those still working towards that freedom. Wishing all health and remissions for the new year.

Squeaky Clean

2008-12-11T11:37:00.002-05:00

Seasons Greetings everyone. Sis and I chatted the other night about how it is becoming increasingly difficult to update our blogs. We have happenings in our lives that are exciting for a moment and we think to blog about them, but by the time we actually get around to doing so, it's old news and not very exciting anymore. Forgive us for our delinquency with updates.

Sis has news that is supremely exciting and no passage of time can diminish that. This news is: HER SCAN CAME BACK CLEAN! We are talking spotless. The family is so happy and relieved. I tell you, this is the absolute best holiday present we could have received!!

I'll leave it to Sis to share more details if she so chooses, but I thought you all would love to hear this news ASAP.

Should you not hear from us before then, have a wonderful holiday and Happy New Year!!

Our thoughts go out to those who are still in the fight and we hope for a year of healing and health to all.

Up to Camp

2008-11-10T09:10:00.002-05:00

Up to camp again this weekend for the last time this year. Weather is unseasonably warm. Temps in the high 50s during the day and only down to 44 at night. The camp stayed at 60 through the night. Downright toasty! I brought enough clothing for the great freeze; thus, it was mild.

There is a long dirt road into camp. When we were almost to the gate, we let Sadie out of the car to run along behind the car. At first she stood there just looking at us driving away, so I popped my head out the window and called. That got her moving and he sprinted all the way to the gate. Huffing and puffing, she jumped in the car so happy to see us. As we unpacked the car, she immediately found nasties to roll in mere feet from the camp. So, first order of business was a bath at the lake for Sadie. This is a dog that swims in the ocean in the winter, but the cold lake water actually chilled her core because back at camp her teeth chattered and she shivered.

A little later that afternoon, it was overcast but pleasant and we took a long walk with the dog in the afternoon. That warmed her up so she finished dried off and stopped shivering. Saw only one other camper who was just arriving. They said they’d be staying up until Tuesday. Lucky them.

So we kept fires going, played cribbage (Dennis one, Candace one), cooked, watched a movie on the computer. RELAXED. So glad we could get up here one more time.

On our way home, we will pick up our season’s passes at Sunday River. The snowboarding season has officially begun. Sunday River was open on Halloween, but this Indian summer weather pattern we’re in can’t be good for them. Dennis and I are hoping to ride at least one day over Thanksgiving weekend, likely Sunday, and we’ll be paying for it on Monday. No one likes the day after first day out. Oh, the agony. Early season muscle aches and sore feet and shins from wearing those boots again. You push through and it does get better.

Election Jitters

2008-11-03T19:19:00.003-05:00

Okay. Enough heckling already from the sister gallery. I know, I know. A lot has been going on. This election has me on pins and needles. I'm so nervous about the outcome. Cautiously confident for Obama. Completely unsure of our ballot referendums.

In Maine we have a question on the ballot about taxing beer, wine, and soda in order to fund our state health insurance called Dirigo. I was on this insurance for treatment and am still on it. A few weeks ago I would have said without doubt that the "Yes on One" side, which would repeal the tax and thus the funding, was going to win. Big Beverage has been pouring $3.5 million into TV ads and print ads for months. In the last two weeks the "No on One" side has turned on its burners with ads, such as mine, and a grassroots effort to educate the public about the truth behind question one. Mel has provided a link to a website with my ad in the previous post if you want to see it. It's ridiculous how outspent we are, but I feel as though we are closing the gap. We'll see if Maine will put their money where their mouth is. When polled, some 61% of Mainers say they would pay more for a statewide health care coverage program.

Also, I am collecting signatures for a petition in support of single payer health care. While the Dirigo insurance has done me no wrong, it has its problems and critics. A completely new approach such as single payer health care might be the answer. It's basically Medicare for all. We all pay a percentage of our incomes for our right to health care, much like Canada's system. No more insurance premiums, no copays, you can see the doctor of your choice, and non-elective procedures and surgeries are completely covered. This is a relatively new movement but will definitely be gaining strength as health care in this country begins its reform hopefully under Obama.

My parents move into their new house November 14th and we're all gathering there for Thanksgiving. Can't wait for that. Dennis, Sadie, and I are actually going up the weekend before to help cobble together a walkway to the front door among other small projects. It's so fun to see and hear how excited those two are about their house project.

Business is holding steady for me. So far, no bad affects from the economy, knock on wood. Dennis is still employed for the time being. We are very resourceful up here in Maine, so we are not fearing the worst should it come to that. I do fear for my dear sister and her husband in New York. Although, if anything should happen to their current jobs, they are in the best job market I suppose. Taking it day by day. I personally knew no one affected by the economy until I read a fellow Hodgkin's survivor's post that she was laid off. Now it's getting closer to home.

There you go. A mixed bag post of happy beginnings for my parents and nervousness feelings over the future. Until next time... hopefully not so long from now.

No on One

2008-11-03T13:41:00.002-05:00

Candace recently did an ad for "No on One," which is an attempt by the manufacturers of beer, soda and wine to repeal a beverage tax that helps fund the Dirigo Health Program. Sis was able to afford health care thanks to Dirigo (she joined a month before being diagnosed with Hodgkins Lymphoma).

The beverage industry has been pumping millions into "Yes on One" with the simple slogan "Are you tired of taxes? Vote Yes on one." Nowhere do they state that this tax will fund such an important health care program.

You can see Candace's ad here. Her ad is the second one on the page. It's so cool to see her in it!

She is sort of like the poster child for the program because without it, she couldn't have received the care she did and she may not have won her battle with cancer. She's been very active in meeting with her local representative and fighting to keep the program alive.

It's a frightening prospect to think that the health care program could lose its funding, so I HOPE HOPE HOPE Mainers vote No tomorrow!

Just a Teaser...

2008-10-15T11:07:00.003-04:00

Sister's wedding was amazing - we had gorgeous weather and lots of fun. I'll let her tell you all about it when she gets back from her week at camp. For now, you'll have to settle for this photo!

Good Check Up

2008-10-01T19:58:00.002-04:00

Hey all one or two of you still reading! How's it going? Last Wednesday we, Dennis and I, went to see my oncologist, or so I thought. Turns out my oncologist took a leave of absence for an indeterminate amount of time starting in August. Okaaay, whatever. So, we saw another onc in the practice that we actually both liked better. Go figure. Anyway, she did a physical exam and I checked out great, lump-free, spleen normal sized, etc. And the most important thing we did at the appointment is decide to get my CT scan and the follow up interpretation of said CT scan on the SAME DAY. I didn't know we could do that! Why didn't anyone suggest this before?! See, this onc, drives up to the hospital in Belfast, just north of us, regularly, so she knows how far it is for us. This is why we like her. She has common sense. So, my CT and next onc appointment is scheduled for December 11.

Now it is full speed ahead with the wedding which is less than two weeks away. It's crunch time and it feels like there is so much left to do. My lifelines of sister and mom can't help me with all this little stuff because it is buying and arranging locally. I've been testing and inquiring about wines and beer, getting utensils and serving dishes, chicken, lobsters. This weekend is getting decorations, cleaning the house in preparation for company, and getting more and more food. Gotta make a guest "book" and evergreen garland to boot! The pen is flowing freely over the checkbook now. Woo-hoo! That is fun.

Tomorrow I am getting my haircut for the first time since chemo. I debated getting it cut at all. I still think it looks cute as is and am still curious what it would look like long and curly. There's time for that. Right now, I feel a little scraggly and would get an esteem boost with a new cut, so I'm going for it. I will take some pictures and post them afterward.

Let me give you a Morgan's garden update while I'm rambling. The garden was a huge success! Right now it is dying...because it's time, not because I'm killing it. We got oodles of green beans, many beets, tons of carrots, and a plethora of tomatoes. I've been harvesting and freezing like mad. Made 24 servings of spaghetti sauce, chopping 32 cups of tomatoes! We are making the lasagna for the wedding with my sauce. The herbs did great too. I have frozen some basil and will need to do something with the rosemary and parsley soon - dry, freeze, or transplant and bring indoors. I will not lie. It has been a lot of work. I can understand why many people don't do this for themselves anymore. I have been liking the squirreling of food. I feel like I am being self-sufficient and doing what my grandmothers would have done. With the future of this economy up in the air, this life skill of living off the land might come in handy.

Hodge Anniversary

2008-09-19T18:21:00.003-04:00

I did think of it on the day, September 12, my Mom's birthday, but just briefly. A year ago September 12 I got the news from the surgeon that my biopsy showed Reed-Sternberg cells indicative of Hodgkin's. It doesn't seem possible that a whole year's gone by. A day like that stays in your memories with so much detail you could swear it was just yesterday. Yet, other times I think about what we all went through last winter and that DOES seem like ages ago. In fact, I ask myself if that all really happened to me.

I think it's good to remember my treatments, surgeries, side effects, support from friends and family, my attitude, all the emotions. I have to say I must have been at my best then which is a good thing to remember. It certainly is empowering to have conquered cancer and I should use it as a tool more often. I don't talk about it enough. Is it because it can still get me? I'm in remission and I feel strong and healthier as a person now, but ... We don't like to think about it. I tend to downplay the whole ordeal because so many people have and had it worse, but it WAS a big deal.

The other day I was checking out at the grocery and the cashier noticed that my hair was growing back in nicely. People that don't know I had cancer will say "cute haircut". She specifically said growing back. I didn't remember her, but apparently she remembered me from this winter. I was caught off guard a bit that a stranger knew I had cancer. She knew something private about me. Then, I let that be alright (I was practically bald. I'm sure more strangers know than I think). It felt good to be connected to this stranger. I wanted to talk her more. Perhaps she was also a cancer survivor. But there was a line. That was a very nice thing she did for me. For a moment I felt vulnerable and exposed and then I was okay with it and we connected.

Life lesson #whatever: Embrace being vulnerable and exposed and you open yourself up to making connections and feeling exactly the opposite which is safe.

Bridal Shower and Family Time

2008-09-07T19:58:00.013-04:00

Well, as I suspected, the bridal shower was a lot of fun and I did figure out its purpose. For someone not comfortable being the center of attention, it offered a test run for the "big day". Sort of. I know I can handle a group of 10, now multiply that by 10 and I'm in a totally new ball game. Actually, from what married folk tell me, it goes by way to fast for you to remember feeling one way or the other about being "it". That's what I'm hoping for along with a bit of attitude that this is my day and I plan on having fun.

The shower was held at the Maloneys' house in Falmouth. The Maloneys are my Mom's bosses and they have a beautiful, big house and the perfect stage for a party. They happened to be out of town Labor Day weekend, so we played at living the high life. Their backyard was well landscaped with a big deck, nice patio furniture, outdoor speakers, and a pool for ambiance - no one brought suits:( Mom did a marvelous job at catering, too marvelous, as usual. I'm sure they were eating leftovers all week. We ate, drank, played Bridal Bingo complete with prizes, opened gifts, and ate cake. Woo-hoo! Very traditional, I guess, but also very fun. Gifts included nighties, a bread machine, dishes, kitchen gadgets, an informative book for the female "O" (Thanks HIls!), and gift cards for more great stuff. Many thanks to my generous and thoughtful family, Mel and Mom, for throwing me an awesome bridal shower. I keep telling them they should team up and do this for a living. They are THAT good. See why I feel like the big day is in very competent hands and I have so few worries? I've got the best support possible.

Here are some photos of the party.

After the party, I got to spend some quality time with my family. I got proof that my city sister is still a little bit country. Mel and I bunked in the camper far away from the house, or at least that is what it feels like when you have to pee in the middle of the night. Half asleep and wanting to stay that way, neither one of us made the trek all the way up to the house when there was perfect pitch darkness right outside the camper. Gotta love camping!

Also over the weekend, we drove into North Conway, NH for some shopping and found a lot of the wedding decorations there. I was so pleased to get a lot of wedding stuff done and out of the way when Mel was there. She made it easier to make decisions, someone to corroborate yays or nays. One last pic of my lovely family taken that weekend.

Incommunicado, Part II

2008-08-28T20:12:00.003-04:00

I have been having just too much fun this summer to blog. I guess that's a good thing, right? Every weekend has been full of sailing on Biscuit, work, or road trips. This blog is not the only thing on the back burner. It's in good company with housekeeping, bookkeeping, washing the car, and my sister would argue wedding planning. Our summers are so short that my priority, justifiably, is to have fun and enjoy as much as I can. It is exhausting, though. Summer is coming to a close soon and with it the hectic schedule, I hope. I am already having snowy, snowboarding longings.

This Labor Day weekend is my bridal shower. I'm excited to see my family and friends and eat cake! The reason for our get together seems kinda silly to me, though. What is a bridal shower? What are we celebrating here? Regardless of my confusion, I am going to have a good time.

Then, It's time to seriously get down to business with the wedding planning. I feel it is completely under control with my sister officially my official wedding coordinator. Nothing unofficial about it. I am the first to admit we are not big planners, Dennis and I. I am so grateful for the help.

Ugh! It's getting late (my late, like 9pm) and I'm losing steam. Can i get a raincheck for finishing this entry? Thanks! Goodnight.

Incommunicado

2008-08-21T12:46:00.000-04:00

Sorry Sis has been uncommunicative this last month. We've been dealing with the realm of the unknown with regard to Dad's estate. So frustrating not to know what you are doing.

In happier news, Sis has been busy planning her wedding, which is in less than two months! I can't believe how quickly time is flying and we haven't made any solid decisions yet! We do know the color palette and we've discussed decoraton ideas, but we haven't moved forward with much. I have made myself her unofficial wedding planner (much to her pleasure AND dismay, I am sure), so I keep emailing her lists of things to think about, snapshots of design ideas I've found.

Her bridal shower is in a couple of weeks, so I'm headed "home." I put that in parenthesis because home as I know it belongs to someoene else now and I will be camping out at Grandpa's with my folks. The walls should be up on their new home by the time I am there, so I'll be excited to see that. Let me know if you have any fun bridal shower game ideas we can play!

I'll encourage Sis to post and keep you informed of her progress. Her post-chemo hair is still wavy and super cute! She's going to be such a lovely bride.

He Left Us on Wednesday

2008-07-12T11:15:00.004-04:00

Hello everyone. I wish my first post after my semi-long hiatus was a good one, but the news is not good. My father passed away last week, three months after he left home for good to be cared for in a convalescent home. A reflection of that day's events is posted on my sister's blog and is written so well that I'm going to provide you with a link to her site rather than recap it here myself. You can go to www.melandsean.com/blog/index.html .

I do want to talk about my own emotions of that day because, after all, that is what blogging does best. It's serves an important role as a therapeutic outlet for emotionally difficult and incomprehensible events.

I was on pins and needles the whole day. The convalescent home called at 7 am to say he was taken to the hospital unresponsive. Being unresponsive had happened just a few days before, but Gladys was there and with the nurses' help they were able to revive him. With no further information, I held out hope the same would be true this time with the aid of top of the line hospital equipment and specially trained staff. When I called the ER and spoke with the nurse she told me his vitals were critical. With each passing phone call I grew more worried and agitated, but I refused to extinguish the tiny glimmer of hope. I continued to work with my dogs, but my heart and head were not in it. In fact, I had very little patience with all of them, and that in turn upset me more. I was on a dog walk when my sister called to tell me the end had come. I fast walked him home, pulling him along every time he wanted to stop and sniff, raising my shaky voice to him, literally crying out "let's go!". I was annoyed that at that moment I was stuck in public working and I couldn't just sit and grieve. That moment passed and I have not felt that again so far. Therefore, I have not properly grieved. I'm sure when I am out in CA with my sister the moment and feelings will arise again and I will be able to let go for good.

Later that day, when I could just sit and ponder, I felt relief at his passing. It is what I've wanted for a little while now because I thought it would be best for everyone. I also felt overwhelmed by the planning that was ahead for me. There was travel to buy, and mortuary arrangements, and coverage for my business while I'm gone, etc. We had one travel snafu where we booked our fares before we knew for sure when the memorial would be held. We assumed it could all happen within a week of his death. So, I was on the phone with customer service three hours before my scheduled flight departed getting it changed. Alas, we are not the ones in control this time. Gladys is handling affairs at the mortuary and the American Legion where his memorial will be held. Interestingly, while Dad was alive and sick, Gladys was always too upset to be very helpful with his care, but now she is on top of details and doing all the right things. Truthfully, I am happy to let her run with it. We just have to oversee the spending because Dad has left nothing. He had good intentions when he took out a life insurance policy 18 months ago for burial costs. However, if the person has not had the policy for at least two years, they can review his medical records and may just determine to withhold the benefits. They can find he has been "sick" with cancer for years and years even though that is not what he died from.

I am looking forward to getting this behind me. I can't wait to see my sister and leave my demanding life so I can properly focus on closure. One more week.

wavy hair pics

2008-06-19T20:55:00.005-04:00

Seeing is believing. Feast your eyes on the eighth wonder of the world.

Check out the wispies off the back.

Defying genetics

Variations in Treatments

2008-06-18T15:06:00.004-04:00

Congrats to my fellow Hodge fighting friends who have recently finished their treatments, like Erin and Steve!

We were all diagnosed with stage 2A Bulky and started treatment around the same time last fall. We all did the combined modality treatment where we had ABVD first and then radiation, yet I was done in March. The big discrepancy in our end dates is due to the number of chemotherapy cycles we had. They had at least two more cycles than I did, and remember a cycle is one month; hence, May for them. Originally I was to have 6 cycles of chemotherapy too, but we changed our minds in January when I had 4 under my belt and started rads.

I wonder why the difference in our treatments if we all started in the same situation? Whether or not they got to much chemo or I didn't get enough is open for speculation. I'm guessing it's simply personal preference of the oncologist, among the more solid factors such as patient response and size of the bulky mass. The bottom line, no matter how we got here, is that the therapy worked for all of us and we are all in remission now.

BTW, I am loving my hair these days. It's definitely chemo hair, all wavy and sprigy. Unfortunately, it won't last. Short hair has never looked so good on me because the wavy nature keeps it from sticking straight up like a chia. We've been having consistently humid weather lately, so the curls are enhanced, and I'm the only curly-head not complaining about it! Part of me wants to keep enjoying short hair that behaves, and the other part wants to see what's next if I let it continue to grow.

Biscuit to Splash Tomorrow

2008-06-09T20:54:00.003-04:00

Oh yeah, Biscuit is the name of our boat. After all the deliberation and suggestions, Biscuit just came to us in a conversation one evening at a friend's house. It was spoken and we knew that was it. Pretty dumb name, but it fits. We know it walks the fine line of being cutesy, but it doesn't cross it. And it's dog related! (Sadie likes biscuits)

So anyway, she goes into the water tomorrow morning. Dennis has been obsessively working on making her floatable.
We hope he has succeeded. She's cleaned up nicely with new paint, in and out, and buffed topsides. We'll have to post some pictures once she's floating. Our first sail will probably happen this weekend. Then we get to see what the ol' girl can do. We aren't expecting to break any speed records.

The hair is showing signs of curls, believe it or not!

The garden grows, except the basil. Life goes on... without basil.

My Scan Results & A California Recap

2008-06-06T17:45:00.004-04:00

Halleleujah! Praise be to...ah...some higher power, I guess. You can call it God if you like. My 3 month out CT scans were good! Here in cancerland we call it NED - No Evidence of Disease. 'I'm dancing with NED' is a common expression for those in remission, like me. In my case, I'm doing a little Dance Dance Revolution with NED:)

The actual scan went as well as can be expected. The scariest part for me is anticipating and wondering how many pokes it will take for the IV. I hydrated the heck out of my body all day long, peed a river, which made me worry that the extra fluid was not staying to plump up my veins. But it was; hence, it took one poke and just a little routing around in there to be tapped. The rest was a breeze.

The scan happened late afternoon Tuesday, but I couldn't get results out of anyone until late afternoon Thursday. After several pestering phone calls, it finally clicked with them that I wanted to know NOW. Apparently, the report was on the onc's desk and she thought we'd just go over it at our appointment next week. Who can wait a week for something like this?! That's just inhumane. So, yet again, I've felt all alone in the health care system, perpetually on the verge of being lost in the shuffle, and no one is looking out for my best interest but ME, MYSELF, and I.

As an advocate for our father, we have found this to be true. It's an old lesson for me by now, but a shocking realization for my sister. You have a higher rate of success with face to face interactions, which doesn't bode well for phone interactions. We have found you need to "follow up call" every little thing. Dad's doctors don't communicate with each other, so we have also been the fiber optic cables relaying their opinions to each other as well as the patient's concerns. Why does information have to bounce across the country just to get phoned into a different office down the street? Because we care a lot more than they do, that's why.

Our trip to California was very sad and stressful. It was a necessary trip for sure. We learned more being there, seeing him with our own eyes, talking to his doctors and caregivers than we ever could have cobbled together with phone calls. Now we have names and faces and they have ours too, for what that's worth. He has more than just leukemia going on. In fact, the leukemia is the only thing getting better. He has emphysema, congestive heart failure, and peripheral vascular disease, too. He lives on oxygen and still has breathing attacks once in awhile. It was very sad. I believe he knows he is dying and thus wants nothing more than to continue life as he knew it until he just drops. All things considered, that would be great, except unfortunately, he can't walk and can't control his bowels, which makes it difficult to be self-sufficient. Gladys can't physically or emotionally care for him. She is having a hard time caring for herself these days. We can't afford a full time nurse, so going home for good is out of the question. That reality is killing him. He gets angry when he is told he cannot go home or drive himself to the bars. Perhaps smoking and drinking himself to death has been his plan for years, and now it looks like death might not be on his terms.

I struggle with my role at the end of his life. What am I supposed to do? How deep into it am I supposed to get? All the way would be to make his wishes come true whatever it takes - paying for a nurse, going out there to be the nurse, or bringing him back here to live with me. All drastic choices that I'm just not feeling compelled to jump into. Dad has been a loner all his life, keeping his independence, answering to no one. He was never a very good father to us; therefore, we aren't at all close. So, where does that leave me now? Feeling very sorry for him. Leaving him to lie in the bed he's made for himself. I realize this sounds chilling coming from a daughter. How we choose to live our lives does have consequences. I will continue to be his advocate and help put his affairs in order from Maine.

This scenario brings me to another enlightening life lesson brought to me by the Hodge. Everyone needs people. No one should be a loner. For the simple reason that we all need someone to call on when we need help. So, be nice to people and they'll be nice to you.

It's so nice of you to have read this whole thing. Now I will be nice in return and read whatever comments you may have.

Scanxious

2008-06-02T21:50:00.002-04:00

Hey everyone. Candace's little sis here. I just wanted you to know she goes in for her first post-treatment scan tomorrow afternoon. She's a little anxious about it (thanks Dennis for coining the term "scanxious"), but she said she is currently focused on staying hydrated so it doesn't take numerous pokes to get the IV right.

We all returned from a good, but draining trip to LA to see our Dad. I'll let Sis fill you in on that when she's back online.

In the meantime, think positive cancer-free thoughts for her tomorrow!!

A few Photos

2008-05-18T20:53:00.005-04:00

A hair update! It's quite a cute pixie hairdo now. Check it out.

We also got my engagement ring from the maker today. He did a great job! Thanks Luke. I think it's simple beauty.

Yes, those nails are dirty. Slightly gross and distracting, but, uh, gardening, hello.

Another angle and see, it looks like I'm petting the dog. Ha, ha.

On a lighter note

2008-05-06T20:19:00.007-04:00

Mel - Mel, thanks for reminding me about the humor in my life! (Referencing comments from previous post) Like I aluded to before, I do have lighter, even funny, stories that happen almost everyday. They can easily slip off the radar, though, when the "stuff" hits the fan. Do you find that true also? It's nice when a good friend (my sister) gives you a wider perspective. You can thank HER for now being subjected to my trivial ramblings of the lighter side of life.

Morgan's garden is taking shape on my lawn. Today Dennis and I spaded up a 10' X 12' patch for veggies. I suppose Morgan's garden really began weeks ago when I started seeds indoors. On my little incubator window sill my tomato and pepper plants are doing great! I just hope they will thrive outdoors as well. I'm like a protective mother sending her child to school for the first time! So many dangers they'll have to face like wind and temperature and bugs, but if they are to grow and reach their full potential I must push them out the door. So young. So fragile.

While we were spading, we noticed dozens of white grubs in the soil. Gardeners will know exactly what these little guys are. I didn't until I looked them up and now I'm bummed. They are pests of common proportions known as the Japanese Beetle. Dunn -dunn - dunn. It's not good. But it also does not mean my garden is doomed. After reading my options, disregarding chemicals at this time, my plan of action is to hand-pick the buggers and place them in soapy water (that suffocates them). Their buddies from the rest of the lawn can certainly come over and replace them if I have stuff in there they like. Which might be the saving grace here. The veggies I'm planting aren't on the list of things they love. They love roses and grapes particularly (which may be what happened to my rose bush the mother in law gave me). I'm planning on planting the tomato and peppers, obviously, as well as string beans, beets, carrots, spinach, rosemary, basil, and a rhubarb plant my neighbor is giving us. If I don't get totally discouraged from pests or bad crops, I'd be up for expanding the garden next season to include more herbs, berries, and squashes. For now, this is all I can handle. One step at a time. Who knew gardening had parallels with cancer treatment?

Our pup, Sadie, has been a pest in her own right. In the past month she's been skunked and quilled. I was away on a trip to Washington D.C. when the skunking happened and Dennis had to deal with it by himself. I heard ALL about it as it was unfolding and I tried to be sympathetic by not laughing my head off, which I safely did in between his calls, but I had my own horrific night to contend with. We had just gotten a parking ticket of $50, I proceeded to scratch the rental car (Shhh. We'll never speak of it again.), it was late and our hotel room was not what I had booked through Orbitz. I am still fighting for compensation. BTW, I highly recommend NOT booking hotels through Orbitz or any of those other "third party" dealers. Their customer service sucks. The deals are attractive, but no one will help you if it goes wrong. I'm off track, but thought I'd throw in a buyer beware based on my experience. Anyway, Sadie....

I come home and all I smell is skunk - on her, the bed, the bathroom, everywhere. Even after a bomber clean, the house still smelled. Dennis and I stunk up wherever we went. Does anyone smell sunk? That would be us, we'd say, and explain. The incident was April 21st. We have since stopped smelling, I think, but Sadie still smells like skunk when she gets wet.

Just a week ago, I took her to the forest for a walk and she disappeared. Not unusual for our dog. She always comes back. This time I backtracked to find her because I had an inkling. As I was walking back calling her, I hear her excited barks. They are in between barking and crying. I've heard it only three times before and it only means one thing. I locate her and she is sticking her nose under fallen trees after this poor little porcupine. She is so excited that at that moment I did not exist to this dog. Even as I was pulling her away and leashing her, she kept trying to get at it. When removed from the stimulus, she turned her attention to the quills in her muzzle, mouth, and front paw and was freaking out. I took her to our vet, luckily only minutes from where we were walking, and $200 later she was good as new. What are you going to do? Shrug and get over it, hopefully laughing one day in hindsight. Sadie's tally is now 0 for 6 : 4 porcupines and 2 skunks. Stupid dog.

My parents have sold their house in Auburn and will be building their retirement home next to my grandpa in New Hampshire. Amazing that it only took a few months to sell in this economy. They are so excited and I am very happy for them. Of course, I should be protesting. They are moving farther from me, we are losing our halfway house to the mountain to snowboard, and it's farther to drop off Sadie for babysitting. I can't pull the sentimental card because I don't have any attachment to that house at all. We've lived in so many houses growing up, it's just the last one in a series, and I moved out of it in 1993. As part of the process, though, they are making me take my junk home. Bummer, no more free storage:( The boxes will just stay stacked in the basement until I muster the ambition to rearrange, DISCARD (the biggie), and organize, oh, just about everything.

Stay tuned for photos including a hair update soon!

Hello. I've missed you.

2008-05-03T18:28:00.006-04:00

Just checked in with all my cancer surviving buddies on their sites and it felt good to be back in the loop with the people who got me through my Hodge. They are now and forever a part of my life. And so I was feeling guilty about not posting on mine. My apologies. It's because (and read with a sarcastic tone) everything is going so well and even-keel. Ha, not really. I've actually been very wrapped up in my father's illness as well as keeping up with my day to day stuff. I can't count how many times something happens quickly that I say to myself, "Oh, I've got to remember that one for the blog". Do I remember? Not everything, but I'll do my best.

My father's condition has deteriorated over the last three weeks. He was in a convalescent home after his feet started spurting blood from wounds and they couldn't stop it. Nurses finally did, but his feet are continuing to weep which he says is like sweating. His legs are swollen, presumably from cancerous lymph nodes pushing against his veins and messing up his circulation. His oncologist saw him and put him on a pill form of chemotherapy right away. She said the pill form has the mildest side effects and at the time his potassium levels were showing high which made her worry about his kidney function; therefore, IV chemo would be too potent. She didn't even have his CT scan on the 29th done with contrast because of possible deteriorating kidneys and thus she got back a sub-optimal picture. She said she will be reviewing it with a radiologist to see if there is one spot that is worse. In that case, radiation to that spot might be beneficial for immediate relief. His potassium levels have gotten better in the meantime so his kidneys are okay. The oncologist said his leukemia has spread to lymph nodes (duh) and into organs like the liver. It will not be going away, so the best we can hope for is to curb it enough to make him more comfortable. Dad says the pill is making him extremely fatigued. All he wants is a cigarette and a drink. No doubt he is suffering as much from withdrawal as from cancer.

We are three weeks from going on a scheduled visit to see him in California. It has been very hard gathering facts from 3000 miles away. Dad has never been a great communicator. He's always wanted to be left alone and will say what you want to hear just so you will leave him alone, and Gladys, his companion, is beside herself as her daughter in Texas is also battling cancer. I speak to her but can't get real facts from her and don't trust her impressions to be objective. He is in the hospital now, but I expect he'll be transfered to a nursing home which is where he'll be when we arrive. I dread seeing him so skinny and bloated, but I will be glad to be there to help. I find myself on the other side as the helpless relative who just wants to do something, and I need to go back and remember the things that my friends and family did that were helpful for me. As soon as he is in a single place for awhile, I must send a care package to let him know I am thinking of him and am there for him.

That's all I got right now. I'm spent. So, before another week goes by with my good intentions of "finishing" this post, let me post what I have.

Ups and Downs

2008-04-10T06:12:00.006-04:00

Life is full of ups and downs, and sometimes they don't nicely alternate for balance. Seems like I've been getting a pile up of downs lately, but then again, it's our nature to focus on the bad news, right? As for the ups, a few mentionables. Bekah, who's blog is listed to the left, has reached her "magic" number of cells harvested to begin her stem cell transplant. It was a long, hard road for her but she did it! She wasn't confident for a time there and began to look at other options to a SCT. She endured and I am so proud of her.

I am snowboarding again. I've been three times now since my last ride in December. Two Sundays ago, Dennis and his brother Ted called it "Vintage Day" because they brought 19 year old boards to ride. These are boards each of them owned early in their snowboarding careers, and they hadn't been on one since. They rode those old girls surprisingly well. Dennis and Ted were surprised by how well the old technology actually rode. I even got on one, having never ridden on something that old and weird looking, and had no problems. A snowboard is a snowboard is a snowboard. They'd shoot me for saying that you know.

Dennis and Ted with their very old gear

Me on a 1989 Burton.(click on it for a better view)

A neutral is that I've started seeing a physical therapist for my lymphedema. I've had two sessions with her and it seems the lymphadema is the tip of the iceberg as we discovered there is actually more damage from the radiation. The lymphedema is minute and hardly noticeable, but the scar tissue in my chest, neck, and back is extensive. I constantly feel like I am carrying the weight of the world in my neck and shoulders, even when I'm not stressed. She massages my arm, armpit, port scar, neck and shoulders. Last session we ventured into acupuncture a little as she put four needles in my legs for general immune system function. I only go once a week because that is what I can afford, but I feel like I could use it more often. And, yes, I can perform some exercises on my arm, armpit, and chest myself, but I'm so bad about it. Ooo, I can feel your unsympathetic thoughts already.

Now, for the downs. Remember back in January I raved about the woman who was walking dogs for me while I went through radiation/chemo? I went so far as to call her a saint. Well, I'm calling her something else these days. She has decided to leave me and start a competing business for the "sake of her family", she says. She wasn't earning enough money working for me, although she never told me this any of the times I asked. I liked her work ethic so much I would have paid her more if she had told me she was hurting. If she had said she was going to landscape, or waitress, or ANYTHING else to earn more money it would have settled better with me. I am kicking myself for not listening to the little voice in my head that warned me to have her sign a non-compete agreement in the beginning. ARRGH! It's a very competitive market up here for pet sitting because so many people are jumping into it. She may not prove to be competition to me, but the gall of what she did irks me. I can't do anything about it because we had no contract, but I have every right to be angry and to call her on her ethics, or lack thereof. Eventually, I will mellow out and call on her to fill in for me once in awhile. Why not? She knows my clients already and I know she's responsible.

Then, my father made my head hurt last week. He had his appointment with the oncologist. She wants to stage his disease so she needs to see another CT scan before they proceed. They couldn't get him in where he usually goes until April 29th. Seemed like a long time to wait, especially since he is in pain probably because an enlarged lymph node is pressing on a vein and causing his leg to swell. So, I call his doctor and explain to her that he is in a lot of pain and can he please get a CT scan sooner. He can, if he goes to a different facility, 15 minutes from his house. He could have his CT scan this week and be on the medication by the end of the week, which the lymph nodes would hopefully respond to quickly and he could be out of pain sooner. No brainer to normal people. Dad is not a normal person; however, and has refused this option choosing to wait in pain until April 29th. He says he wants to go to the place he's familiar with. A CT scan is the same everywhere Dad! I felt dejected that he didn't want my help. I thought I was doing a good thing and was expecting a much different response. At least he thanked me for my efforts. I don't understand why someone wouldn't want to relieve themselves of pain as soon as possible. Whatever. I've done what I could do. I can't help it if he doesn't want to help himself.

Finally, on the wedding front....We think we've decided on the Camden Snow Bowl for a location and it will likely be over Columbus Day weekend. The Snow Bowl has a lodge, lots of parking, a kitchen, tennis courts, pond, hiking, ball field, and a covered deck. Great place for a party. Everyone will have to bring a change of clothes for the activities, or just dress casually to begin with. Food will probably be lobster, chicken, and something veggie. Cake and homemade ice cream (that we all help make) for dessert.

LIVESTRONG for my Dad

2008-04-01T20:09:00.002-04:00

My friend Carissa and I had a wonderful, symbolic gesture planned to end my cancer that involved a potted plant (it is spring after all!) and burying our yellow, Livestrong bracelets that we have been wearing faithfully since October. Carissa did hers and presented me with the beautiful flowering plant and before I got around to also burying my bracelet I found out my father's leukemia is progressing to the point he likely needs chemotherapy.

My sister called me with the news. Apparently he has had a swollen leg for months and now notices enlarged lymph nodes in his neck and groin. He has known about his chronic leukemia for years now, but the doctors have been monitoring it via blood work and he has been within healthy range. No one could figure out his leg, though. It started with pain and they said it was a pinched nerve. Pain medication and time would take care of that. His leg swelled two weeks after that diagnosis. They couldn't find any clot, so they were stumped. A new doctor to my Dad, looked at his latest CAT scan (forgot to ask how recent) and noticed enlarged lymph nodes in his stomach. He has surmised that the enlarged nodes could be squeezing a vein. Enlarged nodes also indicate that his leukemia is starting to overtake the healthy blood cells and pooling in the nodes. He's also been feeling extremely tired and loosing a lot of weight.

Life Lesson Post-Cancer - Lesson #2 - You are the most important member of your health care team! Yes, team. You are the leader calling the shots, not your doctor. Use your doctor as an opinionated resource. You have the right and responsibility to question your treatment or care, question what the doctor is doing or NOT doing. You will be more empowered to be the leader if you are prepared when you meet with your doctor. Do your own research, talk to others like you, and if you have any doubts, you have the right to seek a second opinion. What I learned navigating our stupid health care system for the last six months is that doctors are just people, not gods. Fixing you is their job, and they are overworked like the rest of us. They can take shortcuts and easy ways out too. You can help them help you by being proactive and sharing everything about how your body feels. Oh, and if you still don't have the kahunas to MAKE them listen to you, remember that without you, they wouldn't have a paycheck. And if that doesn't help, take someone with you as your advocate.

My cancer goes away, but my Dad's gets worse. YIN and YANG. The GOOD and the BAD. My little life and the great big universe revolving in the same way. In solidarity to my father, I'm keeping my bracelet on as long as it takes and will bury it when HIS cancer is back under control, hopefully. I'm worried, though. He is not a young man and already has other health issues. He was asking me what chemotherapy was like, so I told him my experience, but also told him it is different for everyone. His won't be anything like mine because I am young and he is old and has been battering his body for most of his life with cigarettes and alcohol. Our cancers aren't the same and our drugs won't be the same. I wish he COULD have the exact same experience as me, for I fear it will be very hard for him at his age. He has an appointment with his oncologist on Monday to learn more about his treatment. Would really like to be there to act as his advocate especially since I've been through it all before. All I can do from across the country is send him information I find on the net that is pertinent, being careful to not overwhelm him, and hope he reads it and asks his doctors about it. Deja vu. Mel and I are back in the researching phase all over again.

My First Week without treatment

2008-03-26T20:31:00.001-04:00

Early this week the radiation in my armpits gave up its grip. The pain and tenderness went away and in its place, my graying skin began to peel like sunburn. The new skin underneath is pretty pink and smooth, though. Nice! I’m guessing that by tank top season I’ll be good to go. That was the last of my side effects beside my slightly puffy, which I’m going to see a physical therapist about next week.

I actually did not think much about NOT driving to Bath everyday for radiation. I was still busy, which made me wonder how I made time back then to go to Bath everyday? Simple. I just did. We all just do what we have to do and adjust. I did notice the fact I only had to fill the gas tank once last week. I was pleased to see how relatively little fuel I was using daily. In some ways I am glad I have been able to move on from treatment so quickly and easily and back into my life’s routine. On the other hand, I should pause to take a breath each day at the time I would have been going down to radiation and be grateful that I don’t have to.

Post Cancer Life lessons For All – Lesson #1 – Acknowledge that which you are grateful for. Sounds like Thanksgiving, and it is, only more often than once a year. It will often bring a smile to our faces to think about how good we have it. Remember the little things, too, like your indoor plumbing, your pet, the local green space, and the friendly barista who makes your coffee.

On the wedding front, Dennis and I are still in the spreading the news phase. We have thrown around places and dates but are no closer firm plans, other then to say fall…probably. First, we are tackling the guest list. Getting the tough decisions out of the way. Also, Dennis bought be a lovely diamond for my engagement ring and we’ll be going back to out friend Luke, the jeweler, donated gold in hand (thanks a bunch family!) asking him to cast 3 rings for us. He will recycle the gold and mix it with silver for durable, malleable, “white gold” looking rings.

Oh, and I already have my dress. I wasn’t even looking for it yet, but I guess it was meant to be. Before I tell the story of my lucky dress, I must warn the fancy people that they might be appalled by what they are about to read. My dress comes from Marden’s in Rumford, Maine. We didn’t end up going snowboarding on Friday because it was blowing 50 mph, so we went to lunch and stopped to check out this new store on our way out of town. I saw these simple ivory “prom” dresses and my brain started clicking. Why not, I said. Do I care that the tag reads “for Target”? No. I’m not so presumptuous. The dress actually looked great on me! And fit perfectly. No alterations necessary! The kicker is that it cost a whopping $10! Are you fancy people still breathing? I know some of you are worried, but you’ll just have to trust me. I only need the thing to hold up for a few hours, right?

Ecstatic to be DONE!

2008-03-15T15:30:00.006-04:00

Hello. As my fellow posters have dutifully made you aware, I am done with Hodgkin's Lymphoma treatments for- hopefully -ever! Tuesday was a very exciting day because it was my final (#20) zapping AND my "wrapping it up" visit with my onc. My mom and step-dad sent a beautiful bouquet of flowers to the onc's office for me to bring this process full-circle. If you'll recall that in the beginning, they sent me flowers on my first day of chemo. Holding the vase in the waiting room brought me back to that day and, briefly, the nervous feeling I had then. I smiled to think how far we've come.

I will not have to report to any oncologist, radiation technician, RN, or phlebotomist for three whole months! My insurance company gets a breather from being a bottomless ATM.

I wish I could say that I am back to normal and treatments didn't change my body, but I'm not, at least not yet. My pesky right arm is still not the same size as it once was. I notice it puffs up a little more when I exert the arm, say cleaning the house or throwing sticks for dogs with it. Nothing like it did when there was the clot, but disturbing, nonetheless. I think we were all really hoping that my arm would be happy normal again once the port was out. Well, that was over a month ago and I didn't see any additional shrinkage with the port out.

We did another ultrasound study on Tuesday and I am waiting to speak to the right people about it. In my mind, the right people are the ones who dealt with my clot in the first place. So far, a different technician did the study, a different radiologist interpreted the study (no clot anymore, duh, I knew that), and my onc, who was kinda on the sidelines for the clot ordeal, will get the information and make the decision whether or not I can stop the Coumadin. I'm sure everyone in that chain is competent, but logically, it makes sense to me that because we are still dealing with the same issue as before, we will have a more complete picture of what's going on if we go back to the original circle of doctors. Yes, living up to my nickname "voice of reason". Someone has to be.

The other side effect I am still dealing with is radiation burn under my arms. Radiation in the body is cumulative, so even though I stopped getting radiation to the spot a week ago, the irritated skin has just been getting worse. I find that frustrating. At some point, healthy tissue will prevail over radiation and the underarms should be on the mend. The technician said the effects of radiation could be felt for up to a month! Yuck.

All in all, though, it feels really good to be done with Hodgkin's. Dr. Chase said some patients actually get depressed at this stage. The drama is over and often the support system dissolves. I don't think I have to worry about that. I only see it as positive, still. I'm certain I will have butterflies in my stomach come June when I have my first post-Hodge CT scan. Until then, life goes on and IT IS better without the Hodge.

On Tuesday night, we got online with my sister and her husband via Skype which allows you to essentially video conference and we did a champagne toast to the end of a long, hard process and to future health. Below is a screen shot of the toast.

I would like to thank everyone who reads this blog and tell you how therapeutic blogging has been for me. Special thanks to those who commented. I enjoyed your input. Whether or not you commented, though, everyone was the friend who just listened. And that was often was the best medicine. My deepest thanks to my lovely sister who made this blog possible and was the devoutest of "listeners". Also, I couldn't have gotten through the past six months without the real life support of my parents and most of all Dennis.

I will make a formal announcement here, that Dennis and I have decided to make it official. We'll be getting married! Don't know when or where, but soon.

Also, I will be keeping this blog for awhile because I believe that life after cancer can be just as confusing and dumbfounding as life with cancer, yet there is far less support for that. Surviving cancer has given me a fresh start with fresh eyes to live better than before. I don't really know what that really means, but I believe it, and I'm going to figure it out. I could still use a support system as I stumble my way into this. First, I will need a new title to this blog. Perhaps it's as easy as taking out the "soon-to-be". Dunno. Does anyone have any suggestions what the post-Hodge blog should be titled?

In parting, here is my first hair update. I'm back to looking like a boy, or GI Jane! I'll take that.

Done!!

2008-03-12T05:50:00.002-04:00

Ok,
I am sure Candace will be writing a long post when she gets a chance to slow down from her busy work week but I just have to share the big news...Candace is DONE with treatment. Dr. Chase gave her the all clear and she does not have to go back for scans and a check up for three months . Radiation was MUCH easier on her than chemo and the only real side effects were some tender skin and mild fatigue, which could be attributed to the two hour drive to and from treatment every day for four weeks. We should know today if she can get off the blood thinner as they did give her an ultra sound to check out blood flow in her right arm and we will get the report today. If she gets to drop the thinners it is back to the slopes next week!!
Be well

Link to another fellow fighter

2008-03-06T17:07:00.002-05:00

I have just added a link to another cancer fighter who is currently going through a stem cell transplant. Please check out Bekah's site and give her your support as she goes through this ordeal.

The Final Countdown

2008-03-06T11:05:00.002-05:00

Yes, you read that right, people. Sis is down to 4 treatments!! She gets one more "regular" rad today and then it's three targeted zaps and she's done. D-O-N-E. Such exciting times!

We have plans to toast with champagne over the internet (praise webcams and skype!). She has been such a strong trooper throughout this whole ordeal. Thank you to everyone for your continued support!

I'll let Sis fill you in on all the details, but I didn't want to let the approach of this milestone float on by without commemoration.

Holy Snow Batman!@

2008-03-02T18:59:00.003-05:00

Dennis, Sadie, and I went to visit my parents in Auburn, Maine this weekend and we were shocked by the amount of snow they had. On the coast where we live, we have perhaps 6 - 12 inches on the ground. They have feet and feet! Apparently the mountains, thus the ski areas, have even more than my parents do. I wouldn't know first hand as I can't bear to go and see other people enjoying themselves skiing and snowboarding in the best conditions we've had in YEARS! Arrgh! I am going to see Dr. Chase March 11th and I am going to twist those words I want to hear right out of her. I'll use jedi mind tricks to manipulate her thought processes until she concedes to allowing me to wean off of the Coumadin. Right arm be damned. It is good enough!

Radiation has been extended to next Tuesday because Dr. #2 was feeding me the wrong information for a week. Dr. #1 originally told us 20 days, three weeks of full mantle and one week of a "boost" they call it to just my mediastinum. Dr. #2 said more than once to me that I'd be completely done after 17 days. I wanted to believe him and rationalized that the doctors probably spoke and changed their minds about the total treatment. I didn't want to ask the stupid question about the discrepancy, but it would bug me to no end if I didn't get it cleared up. So, I questioned Dr. #2 about his belief of 17 days and informed him of what Dr. #1 had said in the beginning. As he was verbally reiterating the 17 day thing, he was flipping through my chart and stopped to read an early letter penned by Dr. #1. It confirmed that Dr. #1 did in fact indicate a recommended boost to my mediastinum. (Of course they always think the patient misheard or misunderstood) The conversation I thought they must have had, they never had, because they are merely human and fail to communicate as much as the rest of us. So what if my lack of communication means dinner doesn't get started on time and theirs means someone is over or under radiated? No biggie. The stuff just causes secondary cancers. Dr. #2 said he was going to have to talk to Dr. #1 about it.

Enjoy these crazy snow pictures taken today and I'll post again soon.

I Love Friday nights!!

2008-02-22T16:08:00.003-05:00

Back in the day I might have loved Friday nights for the first opportunity of the weekend to stay up late and party. I still believe Friday nights are the beginning to the weekend, but alas, as an old fart I love Friday nights because it's the first opportunity to rest and lie like broccoli. In my warped Puritan view, daytime Friday is productive because it is a workday, which makes Friday night's slackness so much sweeter and deserving. And there's something about knowing the following day is "my time" to send me into an even deeper joy over Friday nights. To top this one off, it is snowing outside, a perfect excuse to hunker and seal myself off from the world's stresses. Hooray for Friday! Hooray for the weekend! Guess where I'm NOT going tomorrow? That's right - radiation - all the way in freakin' Bath. I figured out today that I am spending $10 per day in fuel just to go to radiation, and that's in the 30-38 mpg car. I hate dropping that kind of cash on an environmental hazard.

While I was south for radiation, I popped over to the chemo treatment center to have my blood work done there for a change. It was close by and we could cut out the unreliable middle man known as Pen Bay. My white count was 4.2, red count normal, and my INR (blood coag) was 2.3, within range. They had me wait for these results out back in the chemo lounge. I wanted to protest this arrangement, feeling anxious about being back in the familiar sights and smells, but I was also curious. I'm pleased to say I was totally fine. I was in a completely different place as an "outsider". I spoke with the nurse who had made me vomit just because she stood beside me doing her job of hooking up my drugs. She was worried the sight of her would make me sick again! I tested my boundaries and forced myself to scan the room to see all the current chemo patients. No gastric activity. I guess not all of my memories there are bad ones.

Happy Friday night and may you have an enjoyable weekend ahead of you. Mine will be filled with baths, tea, and movies (and a little work, I must confess, but under restful conditions).

Radiation Update

2008-02-21T19:05:00.003-05:00

A little birdie told me I was due for a post. Overdue, I say. It has been a rough week so far, but the good news is that tomorrow I will be halfway done with rads. Actually, I only have one more week of neck and armpit rads, and the last week is concentrated on just the biggest guy in my chest.

The first week of radiation was a breeze. The hardest part was, and still is, the commute. I drive an hour and change on a two lane road, inevitably getting behind pokey puppies, for a less than 10 minute treatment. Then, I am back on the road for home. And this is EVERYDAY! I already spend a lot of time driving my car for work, now this. My second home has become my Volvo! I swapped cars with Dennis these past couple days for something different. On the other hand, I have discovered a fantastic sandwich place in Wiscasset. Yumm.... I look forward to stopping there on my drive home. Whatever gets us through, right? Someone had suggested I get a book on tape. I always complain that I don't have enough time to read, so this could be a silver lining. Read any good books lately that have such a compelling story they won't become just background noise while my mind wanders? Therein lies my problem with books on tape.

Just this week I have been feeling the effects of the radiation more and more. My skin is red and tight like a sunburn. Every night I apply this gel which has the consistency of grease to my chest. Yesterday the doctor said I'd start to feel a sore throat and will get a cough. He meant any day now as today, my throat is sore when swallowing. I still eat anything I want, and everything. I am hungry all the time! Sadly, I will have to cool it on the spicy food for awhile. I love it so much, but eating it makes my chest burn. Then, there's the fatigue. One of the rads technicians commented that I looked tired today. It's visible and detectable in my voice how tired I am, just ask sister. Like I said before, it's not the debilitating kind of fatigue. Just the "man, I need a nap" kind of fatigue. The RN Cindy explained that I'll have only so much energy that I can either spend all at once, or gradually, but then I'll have to take it easy for awhile to recharge the batteries. Because I'm continuing to work, the weekends will be my time to recharge. I'll be laying low on weekends, making as few plans as possible, avoiding obligations, being a homebody. Doesn't bode well for my raging social life (sentence is dripping with sarcasm). I find drinking tea and taking baths are great "recharging" activities.

The new diet is going very well. We have hit upon some fantastic new dishes and some lackluster ones too. The winners are curried chickpeas with tofu and coconut basmati brown rice, black bean soup, gingered greens with tofu, miso sauce with steamed veggies, garlic and rosemary potatoes, and red lentil soup. We are eating fish, chicken, and a little red meant too. I've discovered I'm not a fan of Swiss chard. The taste makes me think of horse barn for some reason. My body is craving sugar. I think I am going through withdrawals, but like the cheating smoker, I don't make it any easier on myself because I have a little bit here and there, just so I continue to want more. I probably should just cut the sweets cold turkey because I am an addict.

Valentine's Day Baby

2008-02-15T16:23:00.005-05:00

I received some exciting news yesterday. My friends Jeff and Kathrina had their baby boy at approximately 7 am on Valentine's Day. Her due date was actually February 14th. Pretty good for a first baby. I've been told babies are often born during storms. Something about the low pressure gives them added incentive to come on out. True to the theory, Kathrina started contractions Wednesday night, the day of a nasty snow/ice/rain storm. Eight hours later in the early morning hours of Valentine's Day, Felix Perrill Scher came into this world. Kathrina was very brave and birthed o'natural. She said there was a whole lot of screaming (right in Jeff's ear. Poor Jeff.), and it felt like it would never end. In hindsight, though, she says "it wasn't too bad. It could have been worse." I've posted a couple of the photos Jeff sent in an email of the little bundle of joy.

On Wednesday, I went to get blood drawn for another check of blood thickness. They had a tough time tapping a vein. Four pokes by three people and finally we were in business. My number was 1.1 again, same as pre-surgery, even though I went back on Coumadin and the Lovenox shots for three days post surgery. And so, they wanted me to get it checked again today and it is 2.1 now, within the range we're looking for. This game of "how thick is my blood now?" is fun and all, but I want to know when it will end. I keep checking my right arm and I think it's gone down with the port removed, but sometimes I think it hasn't, and it definitely still has not shrunk to left arm size. My plan if the right arm never gets back to original size is to have the left arm meet it halfway with a little weight training, left side only. Yea, that should work.

The Maine Democratic Caucus & Radiation Begins

2008-02-11T09:23:00.000-05:00

Sunday was the Maine Democratic Caucus. I was shocked to learn we caucused in Maine. I've been voting for 14 years in Maine. How is it I have never caucused before? I thought we were a primary state because I KNOW I have voted in a primary before. I distinctly remember voting for Howard Dean in 2004. At any rate, I was off to my town hall at 2pm for my first ever caucus.

It was a healthy gathering of 75 Democrats with standing room only. Apparently it was the most attended caucus ever, probably because people like me never knew we caucused in this state until now. I was thinking it would take half hour to do this caucusing thing, but it actually took over 2 hours! I brought Sadie based on my assumption it was going to be quick. She was a trooper, though, waiting in the car. Luckily it was quite warm on Sunday.

We had to elect party officials and election clerks and pass by-laws. Ugh! This ate up 45 minutes in of itself! No one wanted these jobs, so with a little pressure and unanimous votes every time, one by one the positions were filled. Finally, we got to the good stuff. In our tiny room, we physically separated ourselves into left side for Obama, right for Clinton, front of the room for uncommitted. It was 39 for Obama, 30 for Clinton, and 6 uncommitted. The uncommitted group was too small to get a delegate, so they had the option after discussion to join a side. You could see the demographic supporting each candidate. Hilary's side was majority female. Any of the young folks at the caucus were on the Obama side, including me. Men seemed to be with Obama.

Then, the floor was opened up for comments. This was when things got interesting, and lengthy. The two points I heard coming from the Clinton camp was her experience and health care. They were also skeptical that Obama could actually change "the machine" - our current political system. Hilary has more experience with "the machine". The Obama side liked his stance against the war from the beginning and how he inspires hope for a the kind of America we dream about. At least Obama is willing to TRY to fundamentally change "the machine". I gave him my vote for this reason.

This part could have gone on forever. Before comments became heated and personal, our convener suggested we call for a recount, at which point anyone who wished to change sides could (no one did) and our six uncommitted could choose a candidate. All six of them chose Clinton. So, the final count including three absentee ballots for Obama came to 36 Clinton, 42 Obama. South Thomaston has four delegates to send to the state convention, and we'll be sending two for each candidate. If the undecided group was big enough to be considered viable, they could have sent an delegate for the candidate Undecided. Crazy.

Anyway, that was Sunday's news and it's Tuesday. Radiation has begun. I'm already sick of the drive after two days. Also, what has struck me is how I feel after the treatment already. The nurse said I would probably sail through the first two weeks, so I wasn't expecting to feel anything for two weeks. Well, I notice a "hot" chest immediately, like a sunburn, that gradually subsides. I also notice I am tired afterward. Not like the fatigue I had with chemo where I couldn't even muster energy to cook, read, walk, etc. I muster energy to run errands, dog walk, and otherwise push through my day, but I'm really wanting a nap. It very well might be driving two hours each day that makes me tired, not so much the zapping. I almost didn't go to yoga last night I was so tired from the day, but I'm glad I did. That helped to reenergize me. I guess I need to do all my heavy exercise and brainy work in the mornings. It's not going to be Tuesdays I look forward to anymore, but Saturdays instead.

Deported!

2008-02-08T19:17:00.000-05:00

We tied up loose ends today before starting radiation therapy on Monday. First, I had to go back down for another simulation after the first set of blocking was not mounted correctly to effectively block my throat. This time we had success. I may end up with two more tattoos. At this rate, if I wanted to make "real" tattoos out of them I could have quite the butterfly collection with a good representation of the various species.

Next, we went to the hospital to be deported! My INR number was 1.2 this morning and he said he wanted it under 2 to do the procedure. Last Friday, it was 3.5. I stopped taking Coumadin Thursday and ate all the leafy greens I had. Leafy greens are high in Vitamin K which thickens your blood. I even had scrambled eggs with kale this morning (actually very good). Whatever worked, worked, and I was able to get the port out this afternoon. It went very smoothly. There was no IV or anesthesia this time, just local novocain. Local only made me a bit nervous, so I popped a couple Ativan beforehand. As far as I was concerned, he was still slicing into my chest. The familiar loopyness kicked in and I chatted with the doc the whole time. He told me he was taking his family to Sunday River and his son wanted to learn to snowboard. I tried to make a deal with him that I would teach his son how to ride if he'd let me out on the mountain. Unfortunately, that didn't fly.

For the next three days, I am injecting my stomach with the Lovenox twice a day and going back on Coumadin. If my right arm shrinks back to normal size, I may only have to be on the Coumadin for a month. It'll be longer if it is stubborn.

I'm planning on a quiet weekend of watching movies, seeing friends, and my one project of gussying up our dining room table.
Hope you all have a great weekend too.

It's Like Spongebob Squarepants, but different

2008-02-06T06:29:00.000-05:00

My head itches! A sure sign that my hair is making it's encore appearance. We can see that it's starting to fill in too. I don't look AS bald. The quote of the day is, "Soon you'll be Candace Normalhair ... which is like Spongebob Squarepants, but different." a la Dennis Gallant. Thanks for making me laugh sweetie. Huh, the computer is saying "squarepants" one word is NOT misspelled, but "normalhair" one word is. Just wait until "Candace Normalhair" becomes a wildly popular cartoon series and we'll see about that.

Today I take a step forward on the new path. It's a mix of rain, freezing rain, and snow today to make me crazy on my first day driving an hour to treatment. I am going alone since I'm actually not getting radiated today. It's just a dry run. Then I'm going to see Dr. Hottie, I mean Dr. Curtis, the surgeon about port removal. I hope that can happen next week.

Tomorrow I'm taking a friend with me for the real deal. I'll let you know how it goes.

Dana Farber Visit

2008-01-31T18:13:00.000-05:00

The final score is radiation 3, chemotherapy nil. Sorry to keep you all wondering and waiting for the news. What can I say but BUSY. Dr. Fisher concurred that I should get radiation as part of my Hodgkin's treatment. I will begin rads next Wednesday in Bath, about 1 hour from my house...everyday... smack in the middle of the day. Not ideal, but whatever.

Dennis and I packed up Sadie and we went on a family trip to Boston for the day. We left the house at ten of nine. All was going smoothly until we got to Boston. I was navigating, and at this point the directions were reading fast and furious with only something stupid like .2 miles between them. I jumped the gun and directed us toward the Kendall Square exit. The subsequent directions weren't making sense! Well, duh. Rereading the directions, we were supposed to be heading toward KENMORE Square. After much tense discussion and a lecture from Dennis on how to read him the directions (Blah, blah, blah) we found our way back onto Storrow Drive. The rest of the drive was uneventful and wouldn't you know there was a park across from the hospital. We gave Sadie a walk in the park after lunch where she staked her claim in Boston. We ate lunch at a little mexican food dive. The neighborhood was mostly residential so there wasn't much choice outside of the hospital cafeteria which must irk the hospital staff.

Dr. Fisher was very confident and very knowledgeable. First, he wanted to know my understanding of how things were going. Cool. I got to talk. Then he laid out the reasons he is in favor of radiation. He said there are no studies on chemo alone versus combined therapy for people like me. By that he means I am Stage II but I am also unfavorable. Unfavorable characteristics are bulky mass, having B symptoms, and having affected nodes in multiple regions. Having one or more of these labels you as unfavorable. Sound harsh, doesn't it? My single unfavorable characteristic is the latter. He would NOT classify me as bulky. And based on my latest PET scan report, he'd say I was clean. Finally, he said that IF there are any residual cancer cells left, 2 more cycles, even 100 more cycles of chemotherapy, won't kill them. If it hasn't worked on them yet... This is why the radiation.

When we talked about secondary cancers as a side effect, he had good news for us. The studies show a much higher incidence of secondary lung cancer in smokers than non-smokers. And he said chances of secondary breast cancer have been shown to be drastically reduced for radiation patients over 30. That's me! It's good to be old in this instance.

Hypothyroidism is a common possibility from radiation to the neck. The medical world feels this is not a big deal because you can take a pill everyday for the rest of your life to correct this. Otherwise, my temporary side effects will likely be a sore esophagus, fatigue, and a skin burn on my chest.

I feel much better going into radiation after speaking with Dr. Fisher. I'm very glad we went down for the second opinion. I will be saying goodbye to my port soon. No need to keep it in, and just maybe my arm will return to normal size and my chest won't appear so "veiny". At the very least, I will be able to stop the Coumadin by March and can go snowboarding again!

Radiation has a lot of immediate positives. I just needed to know the benefits of it would outweigh my risks. Dr. Fisher new just the perspective I was looking for and put it this way. Radiation would increase my chance of staying in remission by 10% and the risk of secondary cancers are about 1%.

I spent two hours food shopping on Monday reading labels and looking for items I've never bought before. That was a bit frustrating, but it will get easier. I planned a week's worth of meals including lentil soup, miso soup, and tofu and bought snacks with no sugar in them. So far so good, and it's kinda fun meal planning and trying new recipes. I need to research foods that promote healthy thyroid function to help my poor little thyroid through the spanking it's going to get with radiation.

Gonna go make me some fish with kale for dinner. The unfavorable one is signing off. Take care everyone.

Stage is set for Radiation if I so Choose

2008-01-27T19:39:00.001-05:00

Here are the latest counts as of last Friday. My white count is 4! Hasn't been this high since I started chemo. That's what a month with no poisons will do for you. My red count is high and so is my platelet count. There you go. We are all set to go ahead with radiation now. Tuesday we will know if that is in the cards for me or not.

Beantown, Here We Come

2008-01-24T19:28:00.001-05:00

I've got an appointment with Dr. Fisher on Tuesday, January 29th. Yeah! This weekend I'll put together my list of questions and concerns in order of importance to be answered. I'm really not that anal. It's just that my onc recommended that I start with the big, important ones and then ask the smaller questions if time permits. I feel like the child who is told not to bother her Daddy because he works hard and is tired. Don't worry. My feeling is that I am traveling a long way for this opportunity, he's just a human being not some untouchable God, so I will ask as many questions, big or small, until I am satisfied.

So, another Friday will go by and no chemotherapy. That makes it a month between chemo treatments, if I even decide to continue chemo. I don't miss it. I'm enjoying the break from it, I must say. My acne has been better without the steroid and the hair on my head is growing back already. Not to mention no sick days.

On the other hand, I had "simulation" for radiation therapy on Monday. I'm not sure why they call it that because we're not actually simulating a radiation treatment. The equipment they use is a CT scanner not the ray gun, or whatever they zap you with. It all sounds science fictioney to me. They mapped out on pictures of my chest where the killer beams should be aimed for maximum effectiveness (and hopefully minimum damage). Then I got my street cred in the form of four tatoos physically marking the ports, or targets. Yeah, one's a snake. The others are a panther, a Harley, and an anchor. No, not really. They are all dots the size of a freckle. Boring.

If I decide to have radiation therapy, my first day will be Feb. 6th. The rad onc wants to get my white counts up before he fries me and I will need those white babies to heal. My white count was 1.9 as of last Friday and he wants it to be at least 2.5.

I made a solid first step to a healthier, more nourishing diet. Dennis and I are now members of the local food co-op where we can get organic foods, miso, tempeh, raw milk, and wheat pastas. I even saw seaweed ramen noodles there! Dennis says he's onboard with a dietary change, but I'm not sure he understands what that means. I've been doing research with a book loaned to me about food and health. I'd like to limit our meat meals to three per week. We have been eating meat almost every night. I'll be limiting my dairy, switching to rice, soy, or hemp milk, eating beans, grains, fruits and vegetables and most importantly, avoiding sugar. It's not exactly macrobiotic. I'm not going to get into details right now. Will have more to say on this subject later.

Pictures from Dogtown, MA

2008-01-20T20:21:00.000-05:00

Look what I did!! Here are a few pictures from the photo shoot I blogged about last week. By the way, it just looks like the word on the rock is "Coupage". I looked it up and that is NOT even a real word according to dictionary.com, but "decoupage" is. That's what you were thinking of, wasn't it? Anyway, the word is actually "Courage" which happens to be, and not by coincidence, the word on my necklace.

Toughest Decision of My Life

2008-01-19T07:43:00.000-05:00

I had started my post earlier today and then stopped to grieve. One of my internet cancer friends, Morgan, passed away Friday night. Her blog is listed to the left. She corresponded with me faithfully since my diagnosis in September, coining the nickname Hodgkin's Warrior Princess. Her blog was both humorous and inspirational. After reading her blog for the first time, I knew I wanted to adopt a similar positive attitude about my journey with Hodgkin's. I will miss her wit and good advice.

No matter how much information I research and how many people I talk to, I cannot fully grasp this disease. I'm not sure anyone can, amateur or professional. It doesn't make sense who gets it first of all, and then who recovers and who relapses or who succumbs. It's frustrating and none of it is fair. Sorry, I am not following Morgan's example of being positive. You know I am most of the time, but right now I'm sad, confused, scared, and angry.

I have to make a very tough decision about the next step in my own treatment and of course I don't want to make a mistake, but in reality there is no way to know what the "right" decision is for ME specifically. And the wild roller coaster ride called the "Hodge" continues with a sharp banked turn. Or to put it another way, we are at a fork in the road on this journey. While the blood clot of earlier was a roadblock in my path, this is a decision to take a different path, but is it the right one? Or am I happy with the old road?

Yesterday was a big day as I had a meeting with the radiation oncologist in the morning, then my onc, then chemo. Well, chemo never happened because the meeting with the rad onc opened our eyes to an alternative treatment that does not involve any more cycles of ABVD. He says I did indeed have bulky disease in my chest and I am a good candidate for radiation. Wait a minute. Bulky disease? According to my onc I was "borderline bulky". What gives? He said any tumor big enough to press against my SVC (big vein) he'd consider bulky. News to us. Furthermore, we were shocked to learn that my regular onc was actually on the same page as this guy per their phone conversation while we were there. More news to us.

Geez. I expected to get some facts, talk about the pros and cons, and then we all would reach the conclusion that radiation wasn't right for me. We'd thank him for his time and leave satisfied that we were on the right track. That's how I saw it going in my head. Instead, he shows us a hidden road and makes some compelling arguments that this is the better road to Oz. I felt caught off guard and paralyzed, but I realized I'd have to let this sink in later. Right then, I figured I should pay a little closer attention and try to ask intelligent questions of the rad onc. Man, I would have done internet research and had a list of questions like I did with my onc had I known rads was seriously on the table. As far as I knew, the plan was 6 cycles of ABVD.

Anyway, what I learned about radiation. Radiation has been curing Hodgkin's longer than chemotherapy. This was his first argument and I found no comfort in this whatsoever. Medical advancement like safer and more effective drugs can make the "old" treatment defunct. Next, it is somewhat standard to use less chemotherapy and less radiation together, called combined modality therapy, to mitigate the toxicity of both, and still achieve a 90% cure rate. Here is where it gets fuzzy. Some studies claim combined modality therapy is more effective than either rads or chemo alone. Other studies say just chemo is as effective as combined. Then there are the side effects of radiation. Nothing comes for free with cancer treatment. Radiation of the chest and throat causes a dry cough, scarring of the lungs, sore esophagus, and red, irritated skin. It increases one's chances of developing thyroid problems including thyroid cancer, lung cancer, and breast cancer down the road. This is where I say "Holy *&%@!". Hey, but you've got to remember my chances of getting leukemia are higher because I've had chemo. My rads treatment would consist of four weeks driving an hour each way everyday M-F. Uh, can I get a frequent fill-up discount please?

I was quite anxious to leave his office and process. Dennis and I went to Starbucks and sat across from each other shaking our heads. Below are some snapshots Dennis took of the wild emotional range of Candace that morning.

Onto the regular onc visit. She explained her agreement with rad dude. Because I have had problems with the port and I get sick before I even get treatment, she started thinking combined modality might be a better way for me to go. I told her I can handle the chemo. In my opinion, my chemo treatment has been going along better than most and I have nothing to complain about. Oh, and there is ambiguity in my latest PET scan. The rad onc interpreted the report as some lighting up in some of the nodes that could indicate residual disease. My onc interpreted it as metabolically active brown fat that showed uptake. Whatever that is, it's benign. Again, who do I believe? In the face of all this cross-interpretation, we have decided to seek a third opinion at the Dana Farber Institute in Boston. Perhaps we should have done this in the beginning, but no matter, we are going to do it now before I make any decision how I want to continue. We should have that appointment next week.

I have high hopes for some epiphany while I'm there, but I think it's going to come down to what I'm comfortable with. I hate thinking with rads I could be setting myself up for cancer all over again 20-30 years from now. On the other hand, with rads I can feel more confident that any residual Hodge will be taken care of and that I won't relapse. The odds of remission from a fairly quick relapse are only 50% and the treatment is often stem cell transplant. The folks on the Lymphoma Board Forum feel it's best to kill this Hodge completely now and not worry about what MAY or MAY NOT happen in the future. But is this just society's short-sighted, here-and-now view talking? Even with the rads there is no guarantee of no relapse. I have so many questions and so few sound, conclusive studies to research for answers. And as I've seen over and over again in people's stories, we can make the best decisions possible, but the outcome is out of our hands.

It's difficult to get an appointment for simulation, mapping the fields on my body where they'll aim the beams, and the rad onc had a cancellation for Monday, so I am going ahead with preparations for radiation on Monday, but won't start that treatment until I've met with Dana Farber and make a decision one way or the other.

If anyone has opinions or stories about radiation, good or bad, now is the time to share as I'm weighing the pros and cons and am seeking info from anywhere.

Boulder Words & Old Friends

2008-01-16T17:58:00.000-05:00

I told you Turn Around Tuesday would come and it would be pedal to the metal. I don't look back. Sorry I left you all in the dust back there. Here's a recap.

On Wednesday last week I went on my first photo shoot since treatment started. The weather was super balmy for this time of year and offered a nice window of opportunity for an outside job. Sara and I traveled to Gloucester, MA to hike around Dogtown for a couple of days. It's suggested to have guides here because the trails are unmarked and numerous, plus we had a job to do and no time to get lost. So, we met our guides at 10:30 am. They told us Dogtown was originally a community built in pre-Revolutionary War era as a safe-haven. The people of Rockport, MA moved inland to Dogtown to escape the pirates. From Dogtown, they could still walk to Rockport to fish and work. When the coast was safe once again, they moved back and rented their Dogtown homes to "second-class" citizens. It was kinda the slums and became known as Dogtown. Now, it is protected land, owned by the town of Gloucester, open to the public for hiking, mountain biking, and skiing. The featured attraction here are the boulders with words carved on them. During the depression, a rich man owned the land and hired otherwise out-of-work stone carvers to carve words on 23 boulders strewn about Dogtown. They are words to live by like "truth", "work", "prosperity follows service", "help your mother", "save", and "spiritual power". Sara took my picture next to a rock with "courage" on it. I'll post those here as soon as she sends them to me. Anyway, if this intrigues you, check out the November issue of Yankee Magazine 2008 for more info and to see the pictures.

So, I survived the photo shoot. It was difficult and tiring hiking for hours at a time with heavy equipment and getting up at the crack of dawn, but I did it. Then my old friend from 5th grade Jenea came for a long weekend. Miraculously her flights were all on time even though she came in a wintery mix and left the morning after a snow storm. She saw the gamut of Maine weather while she was here. We had dinner with my parents Saturday evening. They hadn't seen each other in 15 years. I took her to LL Bean to get that experience and to pick up weatherproof boots (good thing, too, because she used them in the snow storm). I even shopped and bought a pair of jeans! This is exciting because I am very picky about jeans since they started making them stretchy. I have spent four years trying on jeans and cursing this fashion trend. These were okay, and Jenea convinced me that was good enough. She traveled thousands of miles to help me do something I haven't been able to do for 4 years! Thanks Jenea. We had a snow day on Monday, made chocolate chip cookies, drank tea, talked, and watched a movie. It was really great to have her here and to catch up, but she was on West Coast time which meant sleeping in and staying up late. My corresponding schedule was get up at my normal time and stay up late with my guest. Eh, it was worth it for a few days.

Monday was my radiation oncologist appointment, but I cancelled it due to weather and rescheduled it for Friday. Ironically, we are expecting another storm for Friday. I can't catch a break. If not Friday, than Tuesday. Chemo is Friday and I will make that come hell or high water. If I don't, my whole recovery schedule is out of whack.

I am still tired and recovering from back to back excitement. I love having a helper with work so that I am not go-go-go! all the time. I can actually nap some afternoons:) I'm going to relax with a movie now as a matter of fact. Tomorrow I will start thinking about my strategy for anticipatory nausea this time.

Mondays

2008-01-07T09:07:00.000-05:00

It's 9am on Monday and I am just waking up from the fog I've been in all weekend. Let's see what I've missed. I know presidential hopefuls have been campaigning in New Hampshire, I know Dennis has been playing a lot of Tony Hawk, and I know it's warm out because I hear the dripping of melting snow and the occasional "thwump" of snow sliding off the roof. We are officially in a January Thaw over here in the Northeast. Temps will top 50 degrees somewhere in Maine this week.

An old friend is coming to visit on Friday all the way from California. I bet she'd like to have the 50 degrees while she's here. Sorry Jenea, you get the thirties and it's all my fault because I wouldn't let you come on a chemo weekend.

Thank God, too. It was a pretty horrible one. First, it's back to the drawing board with anticipatory nausea. I really wasn't too worried about it this time because I did so well last time. I took my Ativan and I changed my scent to a strong, pink grapefruit lotion. The huge step backwards happened so quickly with just a slight whiff of the other and it was over. I sat in my blue chair, and had Dennis hand me a bucket. I used that damn bucket twice. Even after she gave me double dose of Ativan. ARRGG! I hate the drugs!

Go figure, I don't remember the ride home. Dinner was toast, I think. Breakfast was...well, who cares, it didn't last. I tried to entertain myself by surfing the web, but that sent my gastric juices into a tizzy. Suppose they knew I was surfing lymphoma blogs? So, I stayed in an Ativan stupor all day Saturday, and Sunday I had to have a change of scenery... you guessed it... the couch. Here I managed to watch a couple movies on Movieplex station. It's just one level up from Lifetime.

Dennis made fish and potato with a side salad for dinner. It was well done except I took a few bites and immediately had stomach pains. Not nausea, but wince and curl up in a ball pains. Ironically, I entertained the idea of inducing vomiting just to get relief, but I knew that was a slippery slope. Early on my onc said it's not a good pattern to get into. Take my Ativan was the moral of that story. Instead, I curled up and waited for sleep to come. I woke up once in the middle of the night and the pain was still there, but this morning I am fine. The moral of this story is, try sleep as a simple cure.

They may have told me what my counts were but I was too out of it to remember. I'll have to fill in that part later. My right arm is still bigger and I seem to remember my oncologist saying I could have permanent lymphadema like breast cancer patients get. I am not dwelling on that depressing news because how do we know it is not the coumadin or my port still causing trouble? I will wait until it is all over to pass that final judgement, thank you. I said I'd talk to a radiation oncologist this week to learn more about it. No one is sold on this option, but it doesn't hurt to talk.

It is only Monday, so I best be taking full advantage of naps because tomorrow is turnaround Tuesday which means pedal to the medal and GO! - Candace

Back to the chemo grind

2008-01-04T21:15:00.000-05:00

Well, today Candace and I headed to camp chemo with her well drugged on ativan but she still got the pre-chemo jitters and was sick before the nurse could hook her up. I am beginning to think it is me! Last week she went with her step dad and was fine! Enter more ativan and a long sleep through the whole chemo session.

I see nothing, I hear nothing....

She felt much better after she got home and had what was hopefully her last trip to the porcelain god. She is sleeping now and if all goes well she should be feeling better tomorrow with a full recovery by tuesday.
We had a good talk with Dr. Chase today and we presented her with some info we had gotten about dropping Bleo from her Chemo cocktail. She said she would look at it and maybe she would drop the Bleo after cycle 4 (She just finished 4 today). I felt a little weird giving a doctor medical info but she took it in stride and asked me to email her another study I had found, so that was good. We also talked to her about a Hodgkin's vaccine that is in clinical trials. She had not heard of it but wanted more info so I will send that off to her as well. Being proactive in Candace's treatment is about the only thing I can do to help her fight this disease. I am a little bit of a computer geek so I spend hours researching Hodgkin's and trying to learn all I can. The amount of info out there is overwhelming! I hope Dr. Chase is up on it all.
I am sure Candace will update you all when she is feeling better but for now she is in the land of ativan dreams...
Be well,
Tomorrow is another day.
Dennis

Rebound of the Blood Counts

2008-01-04T09:48:00.000-05:00

Hi all,

I just wanted to give you a quick update as Candace heads off for her bi-monthly cocktail. I spoke to her this morning and she was in great spirits - she has pink grapefruit lotion to sniff today and she is armed with information to have a good chat with her oncologist about the balance of her treatment. I'll let Candace detail that for you later.

She said the blood tests from last week showed her white blood cell count to have rebounded to around 2.5 (which seems to be her normal chemoed level) and her INR is at a good place, so she no longer has to stab herself! She can stick with just her "rat poison" pill as she likes to call it.

Good thing her counts are better because there's a nasty cold going around! Sean had it during the x-mas holiday (he was not allowed near Candace the entire weekend) and I caught it right when I got back. Now our stepdad has it and apparently Dennis is starting to feel under the weather. Sis says she feels fine, so let's all keep our fingers crossed!!

Her arm is still a bit puffy, but she has been seeing improvement. She's not being very diligent about her de-puffing exercises though! She IS quite diligent about her DDR training. Sadie has learned that she is not to step on the dance mat, so apparently she gets as close to it as she can without actually laying ON it. She's such a smart, funny dog.

I'll leave you with that brief update and let Sis update you further on Turnaround Tuesday.

Happy New Year!

- Mel

Hi! I'm Alive and Well!

2007-12-27T20:35:00.000-05:00

Hey, hey, hey! I'm feeling good and doing fine ... now. I Ativaned up before my last chemo, took a bar of Dove green tea and cucumber to sniff, and I had no anticipatory nausea this time. My recovery from the last chemo was actually a really good one, but it was still frustrating to not be myself while my family was all together for the holiday. I was also sad that I did not partake in the traditional spiked eggnog drinking. I only wanted to for sentimental reasons. At the time, the thought of alcohol turned my stomach. I keep reminding myself that this is only one Christmas, one snowboarding season, six short months in the grand scheme of my long, healthy life. I felt better for Christmas Eve and Christmas day at least. Yeah, Turn Around Tuesday!

I got a lot of booty this holiday including a portable hard drive, a real salad bowl, socks, earings to stand out next to my bald head (I never wore them before), hand towels, CF cards, gloves, Crocks, Dustbuster, sheets, and last but not least Dance Dance Revolution. I am by no means a video gamer, but this one is different. For those of you who don't know about this game, while a song is playing, you step on arrows on a pad when the TV screen tells you to. You get points and grades based on your accuracy and timing. There are oodles of songs and various levels of difficulty. Dennis got two pads so we can compete against each other. Not that I care about that. I just think it's more fun when someone is doing it with you like any workout. And that was the reasoning behind it. It's our home gym. I tell you, a half hour of DDR and I am sweating as if I was jogging on a treadmill, only it's much more fun and painless.

Oh, it was a hoot watching each other try to "dance"! In the beginning, we were all stiff looking and consistently off balance. But we got better. I totally want to have DDR tournaments this winter with friends.

I am still sticking myself with the Lovenox blood thinner and taking Coumadin on top of it until my INR number is between 2 and 3. Then, my blood is thin enough and I can stop the Lovenox. I'm hoping that is real soon for two reasons. I have to go in every two or three days to have blood taken for the INR test. No fun watching them struggle to hit veins. Second, the Lovenox is freaking expensive - even with insurance. I guess I will be on Coumadin until I can be done with the port in five more treatments. My right arm is still swollen, but the doctors say it may take weeks for the excess fluid to drain away from the arm. The doctors also "recommend" that I don't snowboard while on the blood thinners due to the whole internal bleeding thing if I happen to take a good spill or if someone else rams into me. While neither of these things generally happen to me, they are possible I suppose. I could just snowboard with bodyguards.

Not much is going to change between now and my next onc visit January 4th, I hope. Then we will discuss the rest of my treatment and she'll take a look at my arm to see if it is really making progress. If I fail to post before 2008, Happy New Year! Here's to a healthy 2008 for everyone! - Candace

Maine for the Holidays

2007-12-26T10:49:00.000-05:00

Season's Greetings, everyone. I have returned back to the hustle and bustle of NYC from my wonderful trip to Maine for the holidays. Sean and I flew up to Maine from JFK on Delta (avoid doing that if you can - it was not pleasant). We arrived after midnight and the 'rents kindly picked us up and took us home.

I didn't get to see Sis until the morning and I admit when I first saw her, it was a minor shock. Last time I was here - only a month and a half ago - she had quite a lot of hair. True, it was thinning, but still substantial. Now, she barely has any hair - it's kind of like a peach fuzz on her head with a few sprigs of longer hair (grown out from the shave). The family likes to call it her mon chee chee hair... not sure if I spelled that correctly, but the mon chee chee was a little toy monkey with hair standing straight up all over its body ("Mon chee chee, mon chee chee - oh so softy and cuddly!"). Sister looked like she was battling cancer now - before she looked like a rockin' chick who decided to shave her head to make a statement. So that was an initial adjustment.

She also looked exhausted. Her big plan to get chemo on Thurs was ruined thanks to a storm dropping buckets of snow, which shut down the center. She had to go on Friday morning instead, so she wasn't very energetic until Monday night. She was great though, she took naps and then got right back into the thick of things. I got to watch her stick herself with the blood thinner drug (she is an EXPERT - no fear!) .

It was wonderful to hang out with the family - Mom spent much of the weekend in the kitchen baking. There were seven of us for Christmas dinner and Mom made six desserts! She can't help herself, it's cute.

Monday morning Sis went to get blood drawn to see how the thinners were working - end result is her blood wasn't thinning enough, so she needs to stick herself twice a day plus take the pill until her next blood test. Yuck.

We did our gift exchange Monday afternoon when Sis had some energy. The highlight of the gift giving was Dennis giving Sis a Playstation 2 and Dance Dance Revolution with two deluxe dance pads - we spent the rest of the night attempting to dance - we couldn't quite get out of Beginner mode. I accidentally switched it to Basic for one song and thought I was going to have a heart attack! Sister got into the action, too. She was starting to bounce back from her chemo. It was also hilarious to watch Sadie and Sam (the 'rents cat) roll all over the stinky dance pads - they couldn't get enough of it! I think our stepdad took some pictures of us dancing, so we'll post them if he can figure out how to download the images and email them to us. =)

Turnaround Tuesday had Sis back to her old self and we had dance tournaments (Dennis won). It's quite a workout - I may have to get the game for myself! I didn't want to go back home - it was so much fun hanging out with everyone.

Sister's back to work today, but I know she found someone good to help her now, so Sis can focus more on the business end of things. ... and there you have it, you are now all caught up on our Christmas in Maine.

Angioplasty is so COOL!

2007-12-19T18:58:00.000-05:00

Thanks to Dennis for keeping up on the posts so everyone stays informed. I have reached a milestone - the halfway point - and a lot has been going on. First and foremost, as you know the PET scan was clean, clean, clean! Woohoo! An early Christmas present for me! My "moment" was spoiled a bit, though, by the fact that my right arm was freakishly swollen because of a blood clot that needed surgery. Yup, I got hung up on that one little word - SURGERY. Just mention that word to me and I start work on building up that molehill. I arrived at the hospital this morning in full nose sweats, feet sweats, shaking, and chattering. It's completely involuntary and has certainly gotten worse the more "medical time" I accrue. Shouldn't it be the opposite? I think of Duane, Morgan, and Jennifer and all the surgeries, transplants, infusions, etc. that they've been through and am embarrassed that simple angioplasty freaks me out.

Now that I know, I can say angioplasty is a very cool procedure that really is simple. My procedure was in a vein which is your low pressure system not an artery which is more serious. He went in on my right arm fairly close to the port which made snaking the catheter to the problem area quick. For my comfort, they put on some KT Tunstall and my nurse gave me a sedative (aahh). I got another dose before he started ballooning, but I was awake. remember all of it, and I am glad. It was so cool to watch the screen and see what was happening inside of me. They injected contrast in my port and I watched it instantly branch out into all the little veins. Dr. Comyn inserted the catheter, I felt it, and automatically said "ouch!". He asked, "Do you really mean ouch or do you just mean weird?" He moved the catheter again. "Oh, I just mean weird," I confessed. He also stripped my port's catheter while he was in there. He used a lasso tool called a snare, ran it up and down the tube, picked it up and moved it all around. Then the test. The nurse injected another shot of contrast in the port and it went in a straight stream this time to the heart. Success!!!! The vein was no longer blocked. More weird as the catheter exited my vein, and I was done. Piece of cake!

My arm is still swollen, but the coloring looks better. It will take awhile to drain the arm of all the blood and fluid. Tomorrow I have chemo and we'll figure out the blood thinner thing. For now I am still sticking myself in the stomach, but this cannot continue or else I will go broke. Sounds like Coumadin is more reasonable. I am also Ativan-ing before going to chemo. One more hurdle before I can thoroughly enjoy Christmas with my family. I can't wait. I won't be posting until after Christmas, so Happy Holidays to all and to all a good night.

Recovery Room

2007-12-19T13:41:00.000-05:00

Well,
I am sitting in the recovery room with a sleeping post-op Candace and I can report that all went well with the angioplasty. We need to stay in the recovery room for THREE HOURS to make sure she is ok even though she feels fine as they did not use any anesthesia for the procedure. So.... Candace is catching up on some well deserved rest and I am playing on the hospital's wifi network. It looks like she will be on blood thinners for the rest of the time she has her port in just to make sure this doesn't happen again but that is a small price to pay for the convenience of keeping it. Candace has (as her surgeon calls them) "crappy " veins. Every time they try to do a regular IV it takes many attempts and several nurses to get it in so the port really needs to stay. Candace is "back on top" after this little set back. Of course tomorrow is chemo day so there will be a few days of yuck but she hopes to feel fine for the holidays. Candace sister and brother in law will be arriving friday night and the whole family will be together until Christmas. Good fun.
Candace will try to post tonight if she feels up to it so stay tuned for the whole story.
Be well,
Dennis

PET Results

2007-12-17T20:56:00.000-05:00

This just in....
CLEAN PET
Yes, you read that right. Candace has none of those nasty cancer cells running around in her body anymore. Still three cycles of chemo just to make sure, but it looks good!
Happy day :)

I will post again after the angioplasty to let you all know how it went.

Be well,
Dennis

Poster Child Turned Problem Child

2007-12-15T12:07:00.000-05:00

Okay, so I was getting a little cocky about the whole chemo thing. I was beating the odds. Doing things on chemo that most people only wish they could do. I've continued working like normal, gone snowboarding, shoveled snow, minimal side effects from ABVD, gone into crowds .... All too good to be true? YES!!! My reign as ABVD poster child is over. This past week humbled me as complications emerged and the true collateral damage caused by chemo began to show. This stuff makes hair loss seem like a walk in he park.

I bounced back from chemo on Tuesday like usual. Went back to work. I have been preparing to take some time off from walking dogs by hiring an employee, so I had interviews set up this week. This was something I had been thinking about from the get go because I didn't know if I would be able to work, but when I found I could still work it got pushed to the back burner. I still worried that, being the only one, if I got really sick, I'd be screwed. Yet, that never happened either, so I pushed on status quo. But more recently, I decided that even though I can work, I just want to step back and reflect for awhile and try working on the parts of running a business that I don't get to do when I am "out in the field" all the time.

No sooner was I actively trying to make this change when on Wednesday morning I noticed in the shower that my right arm was awfully pudgy. Good Lord, was I getting that fat, I wondered?! I looked at my other arm for the answer and it was thin. Then I felt my right arm and it was hard. Comparing the two, I noticed my right arm was purple too. It was time to make my first call in to my doctor since I began.

She was worried about a blood clot in the arm or a blockage in my port which happens to be on the right side of my chest, so she ordered an ultrasound and wanted to check function of my port. Totally not what I had planned for my day, so I went to Pen Bay out of convenience. This is probably the last time I give that place the benefit of the doubt that they are just as capable as anyone else. The ultrasound of my arm showed nothing. Then it took three different nurses to access my port just to find it could draw back blood so it was functioning fine. I know they were working off orders from my onc, but no one thought that maybe an actual doctor should look at it and then he or she could better discuss my condition with my onc. Frankly, I'm a little surprised my onc didn't think of that herself. So, they sent me on my way with a puffy, purple arm and no reason why.

Later that night as I undressed for bed, I glanced in the mirror and noticed how easily I could now see the veins in the right side of my chest. My second call into the doctors office in the same day! Because it was after hours I got a different oncologist, the on call doctor. I explained the veins and he said I definitely had an obstruction. Oh joy! Really, joy, I was just relieved to now have a reason. I wouldn't have slept otherwise. He said it most likely had to do with my port because everything was happening on my right, so perhaps I should call Dr. Curtis, the surgeon who implanted me, in the morning. This made so much sense to me.

Dr. Curtis spoke to me directly the next morning. That's twice I talked directly to the doctors! I really like that. I've only ever "talked" to my onc through the nurse. He wanted a CT scan next. Pen Bay could do a CT scan, but I decided to cancel some appointments and make the drive down to Midcoast Hospital. He was there, my onc was there, I thought I'd get more immediate answers this way.

I went by myself because it was just a CT scan after all. I had aced my last CT scan BEFORE chemo. Well, I forgot chemo trashes the veins, so it took four pokes and a change in staff to insert the IV for contrast. I was beginning to freak out in my typical way - uncontrollable shaking. They piled blankets on me, but it wasn't the cold. Anyway, as I was recovering from the CT scan trauma, tears welling in my eyes, Dr. Curtis appeared to take a look at me. He walked right by me at first. I hadn't seen him since I had long hair, good veins, and less acne. I must have looked pathetic to him because he was so nice to me all day. While he was there, the radiologist came in with his cute, bright red bow tie and declared that it wasn't the SVC (large vein). Then the two of them did some geek speak that I strained to follow, but I understood loud and clear when he said he saw a marked difference in the lymph node in my chest. It is no longer abnormal size. So, some good news amongst the catastrophe that was now unfolding. They concurred that I was to get another ultrasound because it just had to be a blockage in one of the smaller veins.

Sure enough they found it and its location right around the entry point of my port's catheter. A vein intervention specialist, Dr. Kommen, came to speak to me about the procedure called angioplasty. Less invasive than surgery, he will use catheters with scopes and snares and snake them through my veins until he reaches the clot. Then he will balloon open the vein at that point. Problem solved, hopefully. If I clot again there, we'll have to think about finding Mr. Port a new home like in my leg or somewhere. He wants the clot to dissolve on its own before next Wednesday, so I am injecting very expensive shots of blood thinner in my belly daily to give my body a chance to break down the clot. The worry being the clot could break off when he balloons the vein and go directly to my lung where it may or may not cause a bigger problem.

A little plead to my port: My beloved port, you have betrayed me and our relationship will never be the same. I still need you for three more months, so what do you say we put aside our differences for the time being and exist in harmony?

So, there you have it. To use the roller coaster metaphor, I had been chugging up with confidence. Now, I've crested and am falling. I was totally in control of chemo, then getting anticipatory nausea I felt a little more out of control for just that day, now I am lost. Indirectly, The Hodge is in control for the first time since I began. But only temporarily. Once we clear this port-clot thing up, I am back in control because I know the lymph nodes are back to normal size. In addition, I had a PET scan Friday morning. That will tell them whether cancer is still active anywhere. Small size is good, but no activity is better, so we'll be looking for the results on Monday.

After my PET scan I experienced another side effect of chemo. I hadn't left the hospital yet when I realized all the signs on the walls were fuzzy. I could focus my eyes to read a word, but then I would lose focus. I told a nurse and she rightfully wouldn't let me leave. Called my onc on this one and she said it was fairly common for folks on my drugs to have just this vision problem. Eye drops might help. Well sitting still and getting food in my system helped. For a PET scan you have to fast. That was a little scary. My mind jumped to the conclusion that my clot had moved, which was going to require another IV for another CT scan. AHHHHHHH! In this case, I was relieved to hear I was just not handling chemo as gracefully as I once was.

Hopefully I didn't bore you with my longest post yet. You are all wonderful listeners! No one interrupted me ;)

Half way done with Chemo and the Pavlovian Response

2007-12-08T09:54:00.000-05:00

Well, Candace has officially hit the half way point in her chemo and she has a PET scan scheduled for next week to see if any of that pesky cancer is still around. We had a nice meeting with Dr. Chase prior to chemo and were told that if all the cancer is gone and Candace so wishes, she can talk to the radiation oncologist and possibly stop chemo after 4 cycles and get radiation instead. The radiation treatment involves getting strapped in to a linear accelerator and having the area where you have cancer zapped with tachyons until you turn invisible and you wander the star ship thinking you are dead..oh sorry, that's Star Trek. No really, it is called a linear accelerator but they just zap you with radiation to kill any cancer cells that may have survived the chemo and make sure it doesn't come back. The bad thing about radiation therapy is the possibility of secondary cancers and other problems developing down the road. The area of Candace's largest tumors is in her chest so that would be one of the target areas. This area being zapped could bring on many nasty secondary ailments including, but not limited to; lung cancer, breast cancer, heart disease and becoming invisible. The other tumors are in her neck which I believe is close to the brain....sooo, Candace is leaning towards sticking with just chemo because even though it sucks now, there is less of a chance of long term secondary cancers and a very similar remission rate.
Speaking of sucking now....Candace has verified every psychology 101 textbook lesson on classical or "Pavlovian" conditioning. Just going to the chemo lounge and looking at the nurses, the IV pump, the chair and indeed just smelling the room was enough to get her to loose her cookies, or in this case, her fries (what she herself described as the best french fries ever). This puts us in the unique position of having to deal with her getting sick BEFORE treatment. The funny part of this all is that she feels better when she leaves the chemo center than when she arrives and indeed is doing quite well this time around now that she is home. She says she feels ok and has slept for most of the day, just getting up to eat and youknowwhat. No nausea to speak of and this time around and she has been taking her Ativan regularly so I think that has helped. She hates to take the drugs because they make her dopey, but they work! I have been pushing them a little harder this round to see if they make a difference. So far so good.

"Pavlov's Dog"

Try this fun game about Pavlovian conditioning!!
http://nobelprize.org/educational_games/medicine/pavlov/pavlov.html

This is how Candace recovers from her Chemo (Sadie helps)

Thanks for all your great responses to the last post! It is good to hear what gets you all in the Christmas mood.
We will keep you all posted with the PET scan results and with any luck Candace will be cancer free for the holidays.
Look for a post from Candace in the next day or so when she breaks out of the chemo/ativan haze.
Be well, Happy Holidays
Dennis

Santa Sunday and First Snowfall

2007-12-03T20:52:00.000-05:00

Yeah, and in that order too. We go up to the mountain on Sunday to ride and I don the Santa outfit for charity and to get a few free tickets. I'm thinking, I'm glad I didn't pay full price for a ticket because the conditions weren't that great. Then Monday, today, we get over a foot of snow! Arrrrg! Where's the love Mother Nature? Huh? Doesn't she know I have cancer and there are select days I can ride so it'd be nice to have the snow on THOSE days? Ah, well. We did find a little good stuff on Sunday that was fun to play in. I apologize that my personal photographer "spaced" as he likes to explain, so there are no photos of me as Santa. I'd fire him, but he does take a nice picture when he remembers.

We did snap this one the night before when we dug out the Santa suit complete with his white locks. Since I had no locks, I borrowed his for the evening to go out to dinner with friends. They laughed, mission accomplished, and I took it off because it was really itchy.

It was really nice hanging out at home too in the snowstorm. Below is my handiwork from the day. Isn't she a beauty? I'm so proud that I thought enough to drape the silver garland this year instead of mindlessly wrapping it around and around the tree. I guess watching those stylist on the photo shoots be ridiculously precise with placement rubbed off on me a little. It's unclear in the photo, but that's an angel on the top. She is appropriately hovering above the rest of the tree, but somehow it looks odd and I think I might have to cut the top to bring her down a bit. See, the stylist influence.

It seemed so easy to do the tree this year. Normally, we wait until a week before Christmas and then get the obligatory tree. We spend more time with our tree AFTER Christmas, but it's not the same then. Actually, last year we didn't even bother. Bah, humbug. I'm glad this year we got our act together and the timing couldn't have been more perfect with this snowstorm today. I had a "holiday moment" all to myself today hanging the ornaments with my cup of coffee, music playing, and snow falling outside. Substitute hot cocoa with whipped cream and a peppermint stick in it and insert Sadie by my side looking up at me lovingly and I just styled another picture. In reality, Sadie couldn't have cared less and was sleeping on the sofa.

Called my nurse for my blood counts taken last Friday and they are all good. So, I celebrated by shoveling the deck and driveway. I am still being careful with germs, but honestly my counts have been so good and steady, I have backed off a bit. Mom and I ventured out early in the morning on Black Friday before my chemo appointment. A couple hours was all I could take of the madness. Of course, Nintendo Wiis were sold out before 7am. My counts were a bit low that day and my nurse half jokingly warned me to stay away from Black Friday. Ooops, too late. I even thrust myself into a crowd at a gallery opening. Did I mention small gallery? We didn't stay long because it did make me a bit nervous, but it's just nice to participate in gatherings again.

Going in this Friday for my halfway chemo. Wonder if I will need the Ativan again like last time? Probably. I am one of those sleeping chemo receivers now. Camp Chemo has become Camp Sleepo. Heck, the Ativan might put me so out I'm a snorer too.

Speaking of sleep, I need to get me some now. But I will leave you with a question. What do you do at holiday time that makes you stop and say "yes, this is what the holidays are all about"? Is it your community tree lighting? Perhaps you are making homemade gifts? I know it's not the shopping because I've been out there amongst the shopping and I just don't feel it. Unless you shop at the small, local stores, then I'll by that. I'm curious where people find the Christmas spirit.

Just a picture to show you the snow outside and Sadie's favorite lookout spot.

Insomnia

2007-11-27T23:28:00.001-05:00

Hey all. It's Candace posting under Dennis' alias because I'm on his computer and he hates it when I "mess" with his logins. God forbid he has to take two seconds to type in his password. It's almost midnight and I'm wide a friggin' awake. Today is Turnaround Tuesday, the switch has been flipped thankfully, and I had a good, busy day. Nonetheless, this is what I get for endlessly sleeping the past 72+ hours. Ironic that I can sleep hours on end and not feel the least bit rested one day, and the next day I actually should feel tired but instead I'm killing time blogging until I can convince my restless mind and body that we really should get some sleep. This is a pattern actually. It happens when I'm on the rebound from chemo. My back and neck aches, I can't find a comfortable sleeping position, so I toss and turn, and my mind is racing. When I do finally fall asleep, it's also when I have my most vivid dreams, often nightmares. I have dreamt I was in a flood and once that I chopped off children's legs at the knees because I thought they looked better shorter. When I realized what a horrible person I was to do this, I too had stubs for legs. Typical nightmare, I wake up in a panic, then relief that none of it is real. Chemo drugs are some mighty powerful poisons.

My onc has ordered a pulmonary function test for this Friday. This should have been done in the beginning, but she doesn't do it unless the patient has breathing difficulty, which I don't. We (Dennis and I) were a bit relentless though at the last visit, claiming permanent lung damage would ruin my life because I'm an athlete and activity is so important to me, etc. In fact, I want to drop the Bleomycin if my midway PET scan comes back clear. The Bleo is the drug that can (rarely) cause permanent lung damage. "Rarely" is not good enough odds for me when it comes to ensuring an active lifestyle for the rest of my life. There are plenty of cases where cancer patients developed breathing problems, the Bleo was dropped, and they still went into remission. What I don't know, but there must be a statistic on this, is how many of those cases stayed in remission or had recurrences? Dr. Chase should be researching this for us.

Alrighty, I think I'll call it a night (again) and see if I can fall asleep. Sweet dreams for you and me. - Candace

My two sick girls

2007-11-25T10:15:00.000-05:00

Happy after Thanksgiving everyone!
We had a nice time in Bethel on Thursday with my mom, brother, sister, brother in law and my two nephews. We drove to Auburn after eating WAY too much and stayed with Candace's parents before heading to Camp Chemo on Friday. Candace even got up at six AM to do a little pre chemo Black Friday shopping with her folks. All went well at camp but Candace did say she was getting nauseous prior to starting treatment. It seems that just the thought of the drugs is enough to make her sick now, so she started her regiment with a shot of Ativan and then slept through most of her treatment. One more and she is half done!
Candace was quite sick the night of the chemo and she had to race to the toilet for evening prayers. She almost made it (clean up in isle three please). After a good nights sleep (by her, I had to tend to a sick dog, hence the title) she felt much better and managed to get down a big breakfast of bacon and eggs with an english muffin. Unlike after the last chemo where we had a house full of guests, this time around all is quiet and she has been able to sleep most of the day. Last night she woke up to eat and then to watch a movie before bed and this morning she had a quick bowl of oatmeal before heading back to bed feeling a bit queasy. She woke up when Sadie and I returned from our morning walk at the beach and said she feels better, rolled over and went back to sleep. Ah, the life of a person with poison running through her body. We are both hoping today will be the last day of the blah and we can have a turn-around on Monday.
Next weekend we will be heading back to Sunday River to participate in the Santa Sunday toy drive. It is a lot of fun and Candace will be dressed up as Santa for the morning of snowboarding. The event is to raise money to buy toys for under privileged kids and has the added benefit of three full days of snow boarding for ten bucks for those participating. The mountain donates the passes and the money raised goes to the Bethel Rotary Club to buy the toys. What a deal! Look for pictures next week and check out the SR web site to learn all about it www.sundayriver.com/santasunday.html
Be well, and send your happy thoughts!

Happy Thanksgiving

2007-11-20T18:21:00.000-05:00

Hello Friends, family, and newcomers. I just wanted to wish everyone a Happy Thanksgiving and to say that this Thanksgiving I am thankful for all of the support you have given me. I am thankful, too, that the nodes are shrinking and I believe the cancer is leaving. I am thankful for modern medicine, for people who love their dogs, for people who love other people, and for the internet. There is so much to be thankful for, I hope you all take a moment to realize what you've got and be thankful. One more thing I'm thankful for is that my blood counts are all roughly the same and I still feel good.

I have felt great this week! I worried that snowboarding might have been a bit much, but I continued on into the week with normal energy and never looked back. I even cleaned my own house and enjoyed it. Maybe I'm not as well as I think ;) I dread giving all of this up on Friday to chemo and four more days of blech. (I'm thankful I only have four bad days!) We are going up to Bethel to have Thanksgiving with Dennis's family. Leaving tomorrow night. So, until Friday, I will eat a lot, relax with family, walk my dog, breathe in cool mountain air, and love my life. Then, life sucks, but I don't want to think about that yet. There's a holiday between now and then! Yippee!

Chemoboarding

2007-11-18T17:32:00.000-05:00

Well, it is confirmed; You can fight cancer and still get in some early season turns.
Today we headed to Sunday River for a day of fun on the snow. It was my second day out but Candace's first and we didn't know what to expect. Candace is feeling great but this is the most physically challenging thing she has done since she started chemo in October. Well, I can say without a doubt that she is in full form on snow. It looked like she had just stepped out of a snowboard mag as she headed into her first run and she kept kicking butt on snow all day. We kept riding until we both could barely walk and decided to call it a day around noon. All in all a great day on the hill. It made us both feel like life was back to normal. We hope to get out as much as we can on the "good" weeks all winter long.
Here are a few pics.

Pro snowboarder Candace

Yup, no hair under that helmet.

Our legs are so tired we have to hold each other up!
Be well....

Superpower

2007-11-14T19:30:00.000-05:00

THIS TIME post-chemo I have developed a superpower. I now have an all powerful sniffer. Ultra Sensi-shnauz. If there is an odor out there, I will know it and it will likely make me nauseous. My everyday life smells are so strong... and unpleasant! My dogs, my linens, the grocery store among other things turn my stomach now. And another thing ... just thinking about any aspect of chemo makes me have a visceral reaction. Now that's powerful associations, and dangerous. I have too many more cycles to go for this to be happening already. Think rainbows and bunnies, rainbows and bunnies!

One more cycle (2 treatments) and I will get a PET scan. I should know before Christmas if the cancer is gone. (I hope, I hope) The neck nodes have remained fingertip size, a little disheartening for me since they had been continually shrinking, but that could just be scar tissue. It's all in the PET.

Red blood cell counts rebounded and I'm not anemic for the time being. White counts are hovering at 2.6. I'm pulling the VIP card out for a blood count tomorrow at Pen Bay, so we'll see :)

Pretty quiet week, thus far, except Sadie has been sick. Poor baby dog. Hopefully we have her vomiting in control with a bland diet of boiled chicken. She is also limping, thus is on light duty walks until we see improvement. Worrying about her ailments has taken my mind off of my own ailments. I hope to be snowboarding this Sunday though. I absolutely have to take advantage of my good weekends.

Keeping it short 'cause it's late.

The Fam

2007-11-10T22:13:00.000-05:00

I know... I am bombarding the site with posts. Sorry about that! =) Read the two posts that follow this one for a complete weekend update.

As you may know, Candace is doing a photo essay of sorts about her experience and we were taking some photos for that today. We decided to do a shot with the women in our family - Candace, Mom and me. We all had our special necklaces on (Candace's says Courage, Mom's says Strength and mine says Hope) and I think the pictures came out really well. I'll share them with you in a bit. I am also going to include a fun one of sis with our stepdad Bill - they have the same haircut now!

Oh, and Mom did indeed cook for an army... I am so full, have been all weekend. We ate white lasagna, garlic bread, moose steaks, pie, cream puffs, blond brownies, M&M cookies... Mom does love to bake and we gave her a hard time about it for most of the weekend. =) She was a good sport about it though.

I fly back to NYC tomorrow and I am sad to go. I love being with my family SO much, I'll miss them when I leave. I am very content that I was able to experience this with my sister and that she had her best post-chemo reaction yet! We talked a lot, laughed a lot and I even gave her a mini-manicure. Good times. I'll see everyone again in about a month and a half and I can't wait!

Here we are laughing at something - I don't remember what - but I think this picture captures our family dynamic well.

Aren't we cute!?

Matching Q-balls!

My visit to Camp Chemo

2007-11-10T21:55:00.001-05:00

Hey again everyone,

Sis has gone to bed, so I figured I'd post about my experience at Camp Chemo. I must say, I wasn't sure what to expect, but it was A LOT more pleasant than I imagined. Everyone was so friendly and they were funny and really great with my sister. We all laughed quite a bit.

I felt a bit awkward at times because my sister and I would be talking and we'd laugh and I felt like I was being too loud. Candace said it was an unusually quiet Friday and sure enough, by the afternoon, it started to fill up.

She did such a great job - so calm about everything and smiling. She did say she felt queasy even before the first drug was given - a Pavlovian response of some sort, I am sure - but she was a trooper! I kept worrying that she was going to get sick or miserable, but she had great energy up until she got half-way through that last bag of drugs. She laughed at me because of all the pictures I took... she got up to go to the bathroom at one point and I asked if I should document her trip. She burst out laughing saying she knew I was going to say that!

Here's a little slide show of my Camp Chemo documentation:

Shave and a haircut... two bits

2007-11-10T18:07:00.000-05:00

We are having a great weekend so far! Sis is feeling the best she ever has post-chemo and it's so wonderful to see her. One of our orders of business this weekend was to shave off her hair. See the fun slide show below:

Expecting a Visitor

2007-11-08T18:13:00.000-05:00

I am eagerly awaiting the arrival of my sister from NY. She comes in at 10:30pm as long as flights out of JFK are on time (crossing my fingers). I have been informed that I cannot go pick her up and should be snug in bed at that time. I feel fine, slightly tired, but my red blood counts went down at this last count. I'm anemic. Unlike white counts, this one affects how you feel - tired and logy. They can't be too much lower because I don't feel like I have less energy than normal. Still, everyone wants me to rest, and they're right so I will have energy to whoop it up this weekend with my sis! Shopping, dining, spa and theatre! Yeah, right. More like movies, napping, and movies, woo-hoo. I only see my sister a few times a year and she comes when I can barley move off the couch. If she had only come on an "off" weekend... but she wants to share my experience and be there for me in my darkest hour. Very sweet, but it will be boring. Don't say I didn't warn you. At any rate, I'm thrilled to see her and we'll enjoy our time having an animated, lucid conversation for the hour drive into chemo tomorrow morning.

I'm excited about our one major planned activity, besides eating (Mom is cooking again for an army), and that is head shaving! Good-bye hair that IS NOW noticeably thinning on top. My natural part has widened into the Grand Canyon. It's time and I have clippers all ready to go. Pictures and stories forthcoming, but give me until Turn-around Tuesday. - Candace

My Onc Visit, a retrospective

2007-11-03T17:21:00.000-04:00

This is a blog entry I started last Friday while I was getting juiced. I didn't finish and then I left the land of the living for several days. It had some good info so I added the last paragraph and decided to post retroactively. For more recent happenings read the next one I posted earlier today.

We are live at Camp Chemo, which happens to be a perfect place to blog because I am stuck in place with not much else to do. I’ll save my movie for later when I get fed up with the snoring coming from the cubby next to me. All is going well. The only different thing today is that I’m getting a flu shot. Unfortunately, I can’t use my port for that too. It has to be injected into muscle. I thought my port was the answer to everything painful.

I saw the onc today and she is pleased with the progress. The nodes I can touch are fingertip sized now. Isn’t that great!? One more treatment and in theory the cancer should be gone. Another month and a half and I will get a PET to confirm that there is no cancer left. Then the following three months are security chemo to make sure the cancer stays gone. I also realized that I am in the single digit countdown now – 9 more treatments to go. Hey, is that a light up yonder beyond that tunnel?

I asked Dr. Chase about white blood cell counts and got the scoop. Before chemo started my WC (white count) was 8.1. The week after chemo was 4.2, then 3.something, then 2.4, and today is 2.5. They are low and will stay low, but not dangerous. The dangerous point is 1.0 or less.

More good news is that Kelly Kane is officially a Hodgkin’s SURVIVOR. Her final scan came back clean and she is now pronounced in remission. Congrats to her! Her blog is listed as a link to the left.

Some other news, neither good nor bad, is that my hair is falling out fast and furious now. Showering takes twice as long because of hair management. I have to collect as much hair as I can for trash disposal so it doesn’t clog the drain every shower. I would have good use for a pocket lint roller if there was such a thing as I leave hair on headrests, jacket collars, my pillow, and, well, just about everything. Something kinda funny was seeing all the strands flying around like a ticker tape parade when I was blow drying my hair. Only funny until I looked at the floor after all calmed down. Grumble, grumble about the clean up. Thank God I got a haircut and the strands are shorter, yet still not short enough for my strained patience. I see Haircut Part II in the near future. I said I’d wait until it’s noticeably thinner but I didn’t say to whom. Dennis and I concur that we notice; although, no one else would. Perhaps when my sister is here in a couple weeks a fun activity would be to shave my head. Are you up for it sis? Anyone want to be an accessory and have clippers I can borrow? - C

In the eye of the storm

2007-11-03T13:49:00.000-04:00

Ahhh....sweet weekend. My good weekend. As a bonus, it's a windy, rainy, cold day thanks to Extratropical formerly known as Hurricane Noel. That's why I entitled this entry the eye. It's a perfect day to hunker, collect one's thoughts, and recap this week's events. For me that started with NAUSEA. Once again, the side effects directly after chemo elude prediction. Last time, I had NO nausea. This time, while no vomiting, undertones of queasiness for four days. Yes, I took the Ativan (the stupid, sleepy stuff) and even tried the other pills that scared me because they were known to make people involuntarily twitchy. Freaky. I didn't want to be sleepy, so I took scary pills with a Benadryl chaser which takes care of that weird side effect. I believe that is when I slipped into that marathon sleepfest Dennis mentioned. And that was the alternative to Ativan? Come on!

My parents came up for the weekend and brought food, even if it was moose meat. Yippee! It only cost us a solid day of watching Lifetime network. Dennis escaped to the basement while I was stuck due to my lack of energy to move off the sofa or even utter a protest. Minor price, I say, for their fabulous help around the house. Thanks 'rents. Oh, the moose meat was quite tasty if you're wondering.

Dennis and I were supposed to drive to camp on Sunday, but I felt too nauseous and fatigued to travel hours in a car. On Monday, I still wasn't feeling hot, but we were running out of time. We had to be back on Wednesday and I really wanted to get up there one more time. I decided to go, gambling that I was going to be feeling better at any moment. It was a tough car ride, didn't talk much and tried to sleep the whole way, hoping I didn't just make a mistake.

Everyone has their special places that are worth nauseous car rides and Camp is one of mine. It is at Upper Dam between two beautiful lakes, a place so pristine and untouched. There are no phones, no internet, no noise, and it's darn COLD this time of year. Dennis was my hero, the firemaster, making sure that camp stayed toasty with its two wood-burning stoves. He got up with me twice each night. He stoked the fires and I used the restroom. The place stayed right around 60 degrees while it dropped into the 30s overnight. By Tuesday, someone flipped a switch and I felt 100% better. Ah, finally something that is reliable treatment to treatment - Turning Point Tuesdays. From then on it was a great mini-vacation. I went for walks, cooked meals, and took pictures which are in the slide show.

Mouth sores came and went this week, again. Something else predictable. I got blood drawn locally for a CBC, where I have become a lab VIP. I went to check in at registration like last time and she said I have a recurring account, no need to check in, go directly to the lab. I'm too special for paperwork. At the lab there's a standing order for them to take my blood whenever I show up. So, In theory, I can go in more than once per week and they HAVE to take my blood. Not going to test it, but that's V-I-P I tell you. Next time I'll be aware of others waiting with no paperwork and give them a wink or a nod. And I want my name engraved on a little gold chip and hung on a wooden board with other VIPs. Thanks.

Oh, great job everyone coming up with boat names for our little vessel. They have been good, but nothing has jumped out and grabbed us as yet, so we're still taking all your thoughts. Love, Candace

The day after chemo and the Free Boat

2007-10-27T20:18:00.000-04:00

Hello all,
Candace is pretty zonked post chemo again so I am filling in and posting for her. She has started a post but has yet to publish it. Stay tuned.
We had a very busy week last week, both with work and a little bit of fun thrown in on the side. Candace and I were given a free boat last weekend and the big move to store it at our house was on Friday at the same time as Candace's chemo. So we had a "ask a friend to drive to chemo day" while Dennis moves the boat. Candace called on my "boat mom" and all around good person Wendy Ford to drive her down to Brunswick at 8:00 am. Here is a shot I took when I finally arrived to relieve Wendy at Camp Chemo.

Blood counts were up a little from last week so that is good. It is the first time we have seen them go up since the treatment started. Her white count is still quite low so still no hugs or crowded places for a while. She also got her flu shot after chemo so lets hope it works. We don't need to get the flu during treatment.
You can see Candace has truly set up camp, complete with stuffed animals, water bottles and lunch.
The chemo side effects seem to be a little different each round. This time she had slight nausea and was very tired right after treatment. The nausea seemed to get better after she took her meds but she slept for 15 hours straight before she got up this morning to greet her parents. After watching her mom clean the bathrooms and vacuum (thanks Carol) we had a marathon watching of Lifetime weekend movies (not for me, I cleaned the basement) and a nice dinner of chicken soup and salad. That was the day for Candace and she went to bed at 8:00 to get rested up for our mini vacation to my family's summer place in the Rangeley lakes. Should be very restful. I am sure we will have some pictures to post as Candace can't go up without her camera.
Speaking of pictures here are some shots of our FREE boat from Craigslist. It was right down the river from our house and fit all our needs for a weekender so we had to go for it. I want to thank Chip for his generous gift and Garth and Carlos for their help getting it home. Candace and I had a nice trip up the river to the public landing but we had no wind so it was the motor for us. We will sail it next year after much cleaning and painting.

Rowing out to pick it up

Boy there are a lot of rocks in this river!

Up the Weskeag River

In our Yard!

OK, so I know all our boat friends are chuckling at us owning a boat like this but I have to remind them of a few things. It was free (thanks Chip), We don't have a boat we can weekend in, It was free.
So the boat is named Oyster, but we are going to go against tradition and rename it. Here is where we could use some help and if your name is chosen you will win a sail with us next summer! OK, you can probably come for a sail anyway but we do want your ideas.
That's it for now, tomorrow is a new day!
Dennis

The Haircut, Part I

2007-10-23T15:50:00.000-04:00

"Some people don't lose their hair", they said to me. Well, I can let go of any hope that I would be "some" people. I am officially shedding more than the dog. When I first noticed more than my usually shedding, I decided I would get a haircut and donate to the Locks of Love Foundation while I still had enough hair to donate. I happened to be in Auburn visiting my parents and had time for a haircut so I went to the salon I used when I was in high school. My stylist was Ashley, an ultra-hip, twenty-something who had given the little girl before me big ringlets. Seems appropriate for a little girl, except the girl was actually more like 12 and wearing a polo shirt, khaki pants, skater sneakers, and a big sheepish grin when leaving the salon. Okay, so Ashley is a girlie-girl, but I'll trust that she will give me a haircut for a person my age. We start off great dividing my hair into ponytails of 10 inches for Locks of Love, cut them all off and bagged them. Then she washed my hair and we talked about what to do next. I told her short, very short, otherwise I didn't care what she did. Have fun, I said. I don't think she quite understood that I would eventually not have any hair becasue she was asking questions like how fast does my hair grow. I ended up with a "wedge" haircut, which apparently puts much of the volume in the back of my head, if you style it so, which I will never do. She did though, to the nines. She left it long enough to be feminine and stylish. Not necessary, but fine. I resigned myself to the fact that this haircut will be an intermediate step. That's why this entry is labeled "part I". The important part was Locks of Love and that was accomplished. The gel product and curling iron came out and I simply threw up my hands. All the other stylists were so complimentary, congratualting Ashley on her poofy masterpiece. She had given me, a young woman, the haircut of Hilary Clinton or Nancy Pelosi, 60 year old politicians. I graciously said I liked it to everyone smiling and nodding at me and smiled big when leaving, just like the little girl before me.

I should have taken a photo of the finished product just for kicks, but I didn't . As you can see in the latest Camp Chemo picture, the haircut does not have to look like Hilary Clinton. It does alright as a choppy, bed-heady haircut too. Part II will be a buzz cut when thining becomes noticable. I have a long way and a lot of hair to go first. - Candace

The importance of white blood cells

2007-10-22T19:55:00.000-04:00

Okay, so we are post chemo now and I actually went to a wedding the next day. It was no big deal. I rested all day so I had energy enough to go, and nausea was in check this time. The questionable part was being around many people and their various stages of health. See, every week I get a complete blood count, and every week my white blood cell count has been dropping. Your white blood cells are the part of your immune system that fights germs. I don't know exactly what would happen if I got sick, but I know it would be bad. It was frustrating being at the wedding constantly trying to avoid physical contact with my friends and not shaking hands when meeting someone new. I was being a jerk for my own good. I did congratulate and hug the bride and groom. I couldn't be that much of a jerk. Despite that, I am glad I was there. It was a good time.

Don't you just want to hug me? But you can't!

Like Sis eluded to, I was dead tired on Sunday and Monday after chemo. It hit me like a ton of bricks and I was not prepared because I didn't go through this the first time. I got depressed wondering if I was going to feel this way from now on. I slept a lot and felt no more rested. In fact, sleep was not the solution. Even when I was not sleepy I still could not muster energy to get off the sofa. To add insult to injury, mouth sores were getting worse. It was a low point and this was worth crying over, more than once. Dennis was awesome and took good care of me, but I knew he was worried and it bothers him when I cry. By Tuesday I had my mojo back and I went to work, mouth sores and all. I can't recall when the mouth sores eventually went away. I got too busy to notice, but I am free of them at the moment just in time to have chemo again this Friday.

It may seem like it, but chemo is not the enemy. It's on my side and it's helping. Bugs and germs are my enemies right now. Chemo, though, is like the "inside man" sabotaging my fight by keeping my white cell count low. I had such a busy week work wise last week I thought I'd pushed it too far as I felt achy, fatigued, and had a slight sore throat. I'm so hypersensitive to signs of sickness that I worried and fretted until I could get to a thermometer. My temp was normal, thank god. Short of locking myself in the house, I think I am being good about taking precautions to not get sick. I'm drinking lots - fruity waters and echinacea tea mostly. Eating more than my share to keep up strength. I go to bed early. And I swear I could be the poster child for the "Wash Your Hands" campaign. Let's hope these things will keep me healthy (Well, that's relative isn't it? You know I mean germ-free). - Candace

P.S. - I just learned that Felicity Huffman's character in Desperate Housewives has "the Hodge". I don't watch the show, but I may start just to see how they play out the cancer parts.

Let me take you back....

2007-10-22T19:07:00.000-04:00

Whoa! What a crazy, busy week it was for me last week. I wanted to post all week, but in the beginning it was severe fatigue keeping me and then when I felt better I had to work. So quickly, let me take you back to two Fridays ago for chemotherapy number 2, then we'll get into more recent stuff.

It was pouring buckets as Dennis and I hurried into the building, our arms full of camp "stuff". In addition to my bag o' blanket and pillow, the computer bag, and my "office" backpack with books and the chemo folder in it, we had a cooler with popsicles this time. The staff must think we are nuts. I also brought my new friend, a stuffed black lab named Porter because he has a port in him. Carissa, a vet, doctored him up to have a port just like me. Speaking of ports, my Borg-like port is a beautiful thing. I was a little nervous about using it, but Mikee the pro told me to take a deep breath...and...e-x-h-a- JAB! The needle was in. Sneaky, but I liked it. I stopped exhaling when I felt the quick prick of the needle and held my breath to take stock of any further pain I might be feeling, but there was none. Short story, I love the port. I did the chemo Ativan-free this time, cool as a cucumber was I. Like sis said, between the popsicles, water, and IV fluids my eyeballs were swimming. From here on out, there's nothing new to chemo and it will be a boring routine. I don't know why my family is excited to experience it. It'll be exciting to them for the first half hour, then they'll want to go shopping at the mall next door.

One more thing, another shout out of thanks to all for continued support through your comments, emails, phone calls, care packages, cards, and now cooking (loved the soup and cookies Cheryl and Erik!) Hugs and Kisses from afar as I have to be extremely careful of germs, which is the topic of the next post. Feast or famine with the blog thing, right? - Candace

This is Porter. Look, matching ports!

Cute Comfy slippers given to me in a care package from Ted and Marjorie (Dennis' brother and sister in law)

A Quick Update

2007-10-22T12:33:00.001-04:00

I wanted to give you all a quick update as Candace has been too busy to post! I'll just give you an overview and leave the details for her to post later.

She's more fatigued than ever, but she's in great spirits. Her second trip to Camp Chemo went well. Her port performed swimmingly and she ate popsicles and drank lots of ice water to help reduce the possibility of mouth sores. As a result, she had to take numerous bathroom breaks!

She went to a wedding the next day and ate TONS of food. She got tired halfway through and was so disappointed to leave before dessert.

Her nodes have shrunk even further (yee haw!) and she is starting to lose her hair. She has ridiculously thick hair, so i figure it will be a while before the hair loss is noticeable. As a preemptive measure, she got her hair cut last week and is donating the trimmings to Locks of Love.

Every time I call her, she's working on something or walking dogs... it's great to see her so active and determined, but I hope she takes a moment to rest, too! Anyway, that's the brief update, I hope everyone is well.

Check out this Documentary

2007-10-15T12:32:00.000-04:00

Spoke with Sis last night. She sounded so tired on the phone, but by the time we were done speaking she had perked up a bit. She told me about a documentary she watched recently that was really eye opening and I thought I'd share the details with you all. It is called The Breast Cancer Diaries. Here's a blurb from the movie's webpage:

Ann Murray Paige was a successful local anchorwoman in Maine before she put her career aside to raise her children. At age 38, after being diagnosed with breast cancer, Ann returns to her familiar place in front of the camera-this time, however, exploring herself as the subject.

Sis was really struck by the segment about hair loss - probably because she is just starting to notice hair loss of her own. Sis shaved her head back in the day and looked amazing, so I am sure being bald will suit her very well... and besides, family and friends have knit her some rockin' hats!

Anyway, if you are able, you should check out this documentary: http://www.aimpages.com/thediariesfilm/profile.html

Feel Good Sailing Story w/ Photos

2007-10-12T17:59:00.000-04:00

Now for a story completely not related to cancer. How about that for a change? In fact, like I said, sailing made me forget that I was fighting cancer. I planned to go on this trip before being diagnosed and feel a small victory that I kept a piece of my life normal by going. And I savored it all - weather, food, and company. It helped that the trip happened on my off weekend (no chemo) so that I felt well and wasn't taking any anti-nausea drugs. I knew hydration and sunblock would be important so I brought two 20oz bottles of Fruit2o per day to drink along with tea in the mornings and the Neutrogena.

We left last Friday and I was wearing shorts and t-shirt. The temp was gorgeous. Of course I packed for a blizzard becasue October weather in Maine can go both ways...often in the same day. Upon boarding I got hugs from the people that knew and Wendy knit me a portable "hug" in the form of a shawl. It's a beautiful autumn color. After that talk of Hodgkin's was limited and I just figured the rest of the people onboard didn't know. Dennis later told me everyone knew, and I thought they were extremely cool for letting me have this escape for a few days. At the end of the day Friday we ended up off of Calderwood Island where the crew cooked up some lobster and we enjoyed a picnic. My friend Carissa and I hiked up to the top of the island to get some stellar shots of the boat and the beach. It was an awesome first day! I forgot to mention that I took an afternoon nap everyday out on the water (ahh, luxury) .

Saturday was another gorgeous, warm day with very little wind, though. Stuffed myself silly with the good food, justifying the extra helpings with the fact that one of the side effects of chemo is weight loss. Okay, so it wasn't a side effect for me per se, but somewhere I was eating for someone experiencing weight loss. That night the mess cook with the strong melodic voice sang for us and I gave Dennis a licking in Cribbage while the rain came down. By morning, the sky cleared for another sunny day, but the temp was drastically colder and it was breezy. I brought out the blizzard clothes and felt even hungrier working to stay warm. More justification for pounding the extra calories. Great sail that day!

Monday we docked back in Camden and we said goodbye to our new friends. Now all those in the know wished me well and told me to keep up the good attitude. Yes, I was back to the reality. I went back to work that afternoon and skipped my afternoon nap from then on :(

So, here are some of the photos from that trip. - Candace

Yay! Improvement!

2007-10-09T20:23:00.000-04:00

Hello one and all,

I really want to share the great trip I had aboard Angelique this past weekend where at times I actually forgot I'm fighting cancer, but some good medical news trumps a good feeling story for now. I saw my onc today and she confirmed what I had been thinking this past week which is that the nodes I can touch (in neck and armpits) are feeling smaller. I needed to hear it from the professional before I started my TAKE THAT CANCER! dance. She said I should start noticing reduction from the first treatment and I was skeptical, but hopeful. I am so relieved that I am responding to the ABVD. On the down side this week, a new side effect...mouth sores. They are not bad right now. Eating and brushing my teeth are still pleasant experiences. Cryotherapy can help reduce mouth sores as the cold limits the amount of chemo drug reaching the mouth. That means Popsicles for me at the next Camp Chemo! Speaking of which, Dennis and I are going back to Camp Chemo this Friday afternoon for treatment 1B. I am not nearly as anxious about this one. I am more anxious about using the port for the first time. They will do another blood count then too, but I am feeling really good right now, so am not worried.

Tomorrow I do expect a big fat headache as I finally have the time to grab the bull by the horns and tackle the pile of insurance correspondence and docotor bills that have started to mount. Ugh! We're talking hours on the phone with the insurance company until I understand where every nickel and dime (more like hundred and thousand) is coming from and going to. I work too hard to blindly pay out, and get this, I already found an office visit that I shouldn't have been charged for. I just want to do my part to keep the system honest and in so doing, hopefully, lower premiums to an affordable level for most people.

When I come up for air after having my head buried in paperwork tomorrow, I hope to share my wonderful weekend of sailing complete with photos of a happy me.

Proud Owner of a Brand New Mediport

2007-10-04T20:09:00.000-04:00

First of all, I want to thank everyone, including my new cancer-fighting friends, for leaving comments on my blog. I love them all! It's a great feeling knowing people are with me every step of the way and that others care about my well-being.

Now a caveat: Today is the first day I've experienced real fatigue, so I can only hope this entry makes sense when all is said and done. I'll rebound, no worries. Just over did it a little in the past few days.

On Tuesday I had surgey to implant a port under my skin in my chest that feeds into a major vein. The idea behind it is that chemo drugs can be administered and blood can be drawn without painful IVs constantly in my arms. Frankly, my little wimpy veins would never have held up over time, so I am very glad to have the port. I thought I was going to see my snazzy port in action today because I had my first blood count after starting chemo. Mikee started poking around to find the siliconey center of the port and it really hurt. Duh, it was surgically implanted just 2 days ago! Alas, I wimped out and opted for a prick in the arm (my other arm) this time. Test driving my new toy will have to wait one more week. I have read the owner's manual and am ready to go. No joke, they give the patient an owner's manual for the "hardware" like I chose this Boston Scientific product off the shelves for "installation". These ports can actually stay in people for years, so I guess it's not out of the question that some people self-stab and need the instructions.

The procedure took a whopping half hour. Ah, but I waited in my little johnny, in my little room, with an IV protruding from my hand for several HOURS. Operating room delays and emergency appendectomies (how dare they!) pushed my surgery from 12:45 to the very last one of the day. In the meantime, I haven't eaten a thing since dinner last night and I'm thinking they can save the anesthesia becasue I'm going to pass out from hunger. I kept thinking about the chocolate cake I passed on the way to my room. My nurse brought that in to celebrate her birthday month (and to taunt me). There had better be a piece left for me when this is all over. In addition, there was the strong aroma of coffee wafting down the halls ALL DAY LONG. I imagined the nurses downing yet another cup in between patient visits. Bill went home to be with the dogs eventually and it was just Mom and I playing the waiting game. Finally, my surgeon Dr. Curtis popped in for a visit looking cool and calm despite his crazy day. Okay, here we go. As I was ramping up for my big moment, the rest of the ward was a complete ghost town. I passed empty room after empty room on my way to the OR. I was Curtis's last stand for that day. Ewww, sorry, bud pun.

That means I'm done for now. I'll be sailing on Angelique this weekend, so you all go and have fun too. BTW, my blood counts were excellent! Yay! - C

Family Field Trip to Camp Chemo

2007-10-02T12:52:00.001-04:00

Is it strange to be so excited for my first visit to Camp Chemo? I am heading up to Maine November 8th so I can be there for my sister's third trip to camp. The 'rents are taking the day off and we're going to hang with our "Hodgkin's Warrior Princess" (thank you to Morgan for coining that term).

I am just thrilled to be able to directly participate in SOMETHING. It is so tough to be down in NYC and not be there to help. Sis and I have great phone conversations though, so I suppose that's something. =)

Anyway, I'll let you know how our field trip goes next month. For now, stay tuned for port installation updates and keep those comments coming. They are really encouraging for the entire family and they help to keep our spirits up!

Back to work

2007-10-01T13:51:00.000-04:00

Hello all!
Today was Candace's first day back at work after her first chemo treatment and she did great! It was a short day and she is pretty tired but she made it through. Her day started with a Sadie walk followed by four of her normal clients. I will be picking up the slack when Candace can't walk dogs due to treatment and other scheduling problems. Tomorrow is the big day to get the port put in. Wish her luck! For info about ports check out http://www.users.fast.net/~kittenz/Port.html
It is a page from another blog and it has some great shots and illustrations. Be aware they are a bit graphic.
Be well,
Dennis

How do I feel now?

2007-09-30T18:21:00.000-04:00

I feel...eh. Upon arriving home from chemo on Friday, I lost my Snickers Bar. Perhaps not the best choice if nausea is a worry, but it really wasn't when I left there. I felt strong and happy that I had won the fear battle. Alas, I got increasingly more nauseated on the drive home, walked into the house, and felt this feeling that I haven't felt in years. I tried to remember what to do when you have to vomit. I was out of practice. Running to the toilet was not coming to mind. Bucket was for some reason, and since I was in the kitchen, I quickly rifled through the pots in the cabinet and chose the spaghetti pot. Then, I took it outside and proceeded to use it on the deck, I think becasue Dennis was still outside but not real sure of my thought process on that one. Unmistakeable nutty, chocolatey....

I took an anti-nausea/sedative pill that evening and was dead to the world. Dennis was having phone converstations right next to me and I can't remember him being on the phone. I woke up the next day alert and feeling a ton better. No nausea, but the doc said to take another pill in the morning and so I did and wound up back in stupidville for hours. This is the same drug I liked so much while I was having chemo, but I hated now for how useless it made me. Dennis got me out of the house while still a bit doped to walk Sadie and that help the effects wear off completely. I still have a little nausea now and again, but I'd rather deal with being a little uncomfortable than out of my mind, thank you. And no, just because I'm not using them doesn't mean anyone else can :) More after the surgery on Tuesday to put the port in.

Straight from the Horse's Mouth

2007-09-30T17:08:00.000-04:00

Hi, hello. It's me - the butt-kicking soon-to-be cancer survivor. I like the sound of that. Thanks sis for setting up this blog and making it super easy to do. I don't know if I'll be as good at it as Dennis, but one way or another my stoy will get told.

As you know, last Friday was my first day at Camp Chemo. We are calling it that becasue we packed up cards, books, blankets, photos, stuffed animals, and movies like we were going to a fun-filled day at camp. The place where I am being treated is in Brunswick, a good hour and fifteen minutes from home. We started out late of course as we fielded phone calls from everyone wishing us well. The drive started out well, but as I got closer to the exit I started panicking. I got very quiet and nervous - so nervous that my teeth were chattering. It was as if I was going out on stage in front of millions of people. Dennis parked the car and I followed him reluctantly into the building. I didn't want to do this. I didn't feel ready, but I had to begin so I'd know. He held the door for me and urged me into the room. I took a deep breath and went to check in. A beautiful bouquet of flowers was waiting for me at the front desk. They were from Mom and Bill. Oh,no. It was taking all I had to concentrate on being brave. Their sweet, unaticipated gesture broke my concentration and I felt like sobbing, but they were going to call me back there at any moment. I took deep breaths to stop this wave of emotion. Once we started the routine of height, weight, temp, etc. my mind was busy again.

One of the first things Mikee, my RN, did for me once the IV was in place was to administer a sedative. My anxiety was blatant. If I looked stoned in the photos Dennis posted, it's because I was. The first drug was a long-lasting anti-nausea. The next four drugs were the ABVD. Three of them were "pushed", meaning manually injected slowly via syringe. Those went fast. The last drug was a two hour drip. We watched a movie called "Puffy Chair". Then it was over, just like that. I felt nothing but sedated the whole time and my vein held up beautifully (but my IV arm is a bit sore now). Whew! Now the scary unknown is much more known. I can't rest on my laurels though becasue each treatment can be different. Now comes the uncertainty of what my days in between will be like.

In the begining

2007-09-30T10:01:00.000-04:00

Hello all,

Candace feels pretty normal this morning and is out with her mom and Bill (step dad) shoe shopping for an upcoming wedding.

I thought I would write a quick note to bring everyone up to speed on Candace's condition as some of you may not know the whole story. I should have posted this first but I was so excited to put Camp Chemo picks up that I forgot you might not have the whole story.

In late June or early July Candace noticed some lumps in her neck and thought that they were stiff muscles and would go away in time. She then noticed swelling under her arms and felt it was time to go to the doctor (if she could find one taking new patients). She found a doctor in Waldoboro named Dr. Love (no joke) who, along with his wife Dr. Webb, MD (also no joke) felt Candace should see a surgeon. Off she went to Damariscotta to meet with Dr. Miller for a fine needle aspiration biopsy. The results were found to be inconclusive so it was off to the hospital for a surgical procedure to remove a part of a lymph node under her arm. The results from this test came back positive for Hodgkin's disease, a very treatable type of lymphoma.

Next came more tests to find how far the cancer had progressed (called staging). It was not a fun time for Candace. If you want to find out how un-fun just ask her. It was determined that she was at stage IIA. The A means that she is displaying no symptoms (other than the swelling).

Candace then interviewed oncologists at different cancer centers before settling on Dr. Trudi Chase from the Maine Center for Cancer Medicine in Brunswick.

For a layman's version of the staging levels, a brief overview of Hodgkin's and to look the site of the center that is treating Candace go to http://www.mccm.org/content.aspx?section=canceroverviews&id=747

Check out my first post to look at pics of the Chemo lounge.. I will be posting more photos of the facility and the great staff in the future.

Be well,
Dennis

The First Day at CAMP CHEMO

2007-09-29T21:03:00.000-04:00

Well,
Candace had her first chemo treatment yesterday and she is doing GREAT! She was a tad bit sick last night but we went on a long walk with Sadie this morning and she had a big lunch and dinner and feels normal. Lets hope this is how it will be the whole time she is in chemo. She says she is not ready to post yet but I thought I would show off some pics from her first day at what will be known from now on as CAMP CHEMO.

The stuffed animal is a gift from the private collection of Ava Demer, the Daughter of Sara Gray and James Demer. The Blanket is grudgingly on loan from Sadie the dog. Music is Amilie courtesy of Melanie Kuchinski Rodriguez.