Hi! I'm Alive and Well!

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

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!

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

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

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

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

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

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.