Friday, December 12, 2008

Pics

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!

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.

Thursday, December 11, 2008

Squeaky Clean

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.

Monday, November 10, 2008

Up to Camp

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.

Monday, November 3, 2008

Election Jitters

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

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!

Wednesday, October 15, 2008

Just a Teaser...

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!

Wednesday, October 1, 2008

Good Check Up

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.

Friday, September 19, 2008

Hodge Anniversary

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.

Sunday, September 7, 2008

Bridal Shower and Family Time

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.

Thursday, August 28, 2008

Incommunicado, Part II

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.

Thursday, August 21, 2008

Incommunicado

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.

Saturday, July 12, 2008

He Left Us on Wednesday

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.

Thursday, June 19, 2008

wavy hair pics

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

Check out the wispies off the back.

Defying genetics

Wednesday, June 18, 2008

Variations in Treatments

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.

Monday, June 9, 2008

Biscuit to Splash Tomorrow

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.

Friday, June 6, 2008

My Scan Results & A California Recap

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.

Monday, June 2, 2008

Scanxious

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!!

Sunday, May 18, 2008

A few Photos

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.

Tuesday, May 6, 2008

On a lighter note

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!

Saturday, May 3, 2008

Hello. I've missed you.

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.

Thursday, April 10, 2008

Ups and Downs

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.

Tuesday, April 1, 2008

LIVESTRONG for my Dad

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.

Wednesday, March 26, 2008

My First Week without treatment

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?

Saturday, March 15, 2008

Ecstatic to be DONE!

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.

Wednesday, March 12, 2008

Done!!

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

Thursday, March 6, 2008

Link to another fellow fighter

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

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.

Sunday, March 2, 2008

Holy Snow Batman!@

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.



Friday, February 22, 2008

I Love Friday nights!!

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).

Thursday, February 21, 2008

Radiation Update

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.

Friday, February 15, 2008

Valentine's Day Baby

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.

Monday, February 11, 2008

The Maine Democratic Caucus & Radiation Begins

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.

Friday, February 8, 2008

Deported!

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.

Wednesday, February 6, 2008

It's Like Spongebob Squarepants, but different

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.

Thursday, January 31, 2008

Dana Farber Visit

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.

Sunday, January 27, 2008

Stage is set for Radiation if I so Choose

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.

Thursday, January 24, 2008

Beantown, Here We Come

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.

Sunday, January 20, 2008

Pictures from Dogtown, MA

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.

Saturday, January 19, 2008

Toughest Decision of My Life

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.