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.