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, 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.

Wednesday, January 16, 2008

Boulder Words & Old Friends

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

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

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

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

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

Monday, January 7, 2008


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

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

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

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

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

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

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

Friday, January 4, 2008

Back to the chemo grind

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

I see nothing, I hear nothing....

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

Rebound of the Blood Counts

Hi all,

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

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

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

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

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

Happy New Year!

- Mel