Longest ride since diagnosis

No question I'm getting my strength back. Had my longest bike ride since I was diagnosed today. Durring treatment if I went for more than an hour there was a good chance I'd feel just wrung out afterwards, as opposed to the ususal endorphin muted fatigue. I'm definitely seeing improvements in fitness: hills that put me immediately in the red before, I now can put forth a real effort where previously I was just surviving. Most important, the fear of running out of steam is gone. Now I find myself looking forward to the next opportunity to ride.

It's far and away the thing I missed the most. Not just riding, but feeling like I had some real power and endurance while out on the bike. There's still a ways to go before I'm back on form, but I feel like I'm on the way.

Tomorrow I get a sunny day

For some reason the weather gods decided it should rain on my first week out of the chemo cycle (that would be three weeks past treatment, since the cycle is two weeks). But now events are having a nice confluence (I hope I used that word correctly). I got my port out yesterday, and I'm allowed to exercise and shower tomorow. Today it's still raining, but the forecast is for sunny and 70 tomorrow. I think I've noticed a steady improvement in my riding fitness over the past week - well at least the first 4 days of it. I'll be able to get out and ride a week beyond any chemo recovery I've had in the past 5 months. I've already been ramping up my miles from my trough near the end, and mentally I've been excited to get out and ride (for a while it was as much duty as anything else). I'm hoping and expecting to feel yet more progress. Sorry to dissagree with you, Lance, but it IS about the bike.

Follow up radiation

So ever since diagnosis I've been working with doctors who felt it best to treat with chemotherapy and avoid radiation. The conventional wisdom, they said, was that the toxic effects of chemo, especially long term, were less of a risk than radiaion. While I was undergoing chemo I was counting on that being it for treatment. I felt, at times, priviledged that my doctor was so enlightened as to keep me on a (relatively) low impact treatment path.

Now that the chemo is over things are not so cut and dry. The standard treatment for my disease process is to do some consolidative radiation therapy for "clean up" after the chemo is finished. With bulky Hodgkins there is usually a residual mass where the large tumor was. Most likely this is scar tissue, which is deposited as the tumor grows. My oncologist is leaning towards avoiding radation, but she made me an appointment with the radiation oncologist at WHC.

I met with the radiation oncologist last week. It was an informative meeting and worth having. He made some compelling arguments about follow up radiation. 1. It's the standard of care for my disease process - why not give yourself the best chance based on the current available evidence, since the therapies for relapse are brutal. 2. Current targeted field methods don't have the same impact than the older wide field "mantle" therapies that most of the follow up studies are based upon. On the other hand, I know I had excellent response from early on to my chemo regimen. I seem to have so far avoided the potential lung toxicity from the drugs - and I don't want to go through another treatment that brings that risk back from another angle. And it's just plain good to be "done."

But I've found that you're never done with cancer. Even when you are. Passing on radiation because my primary oncologist has given me permission and I want to be "done" has a reckless feel to it. Even though at this point I feel well and I MOSTLY believe that I have been cured. When I first spoke to lymphoma specialists at NIH and they described the likely proscribed treatment, emphasizing that the best outcomes correlated to getting the treatments on schedule for the durration I thought "Heck yeah! Bring it on. If that's the plan, I'll show up on schedule when and where." And I did that. I watched my doctor give the infusion nurses special instructions to treatment even when my white blood counts were below the "normal" threshold. The standing orders for me were "If you can measure something, treat him." I dutifully marched in even when the anticipatory nausea set in later on, and I fought it down by force of will on the very last treatment.

Right now I don't know what I'll decide. I'm going to go into the radiation oncology center so they can map my targeted treatment area. And I need to have another consult with my primary oncologist to further discuss pros and cons. Do I roll the dice that my body responded well enough to the chemo to get me to final remission, or do I roll the dice that it will continue to hold up to another course of potentially damaging treatment?

PET Scan Results

Saw the doctor today. PET was negative. So no evidence of cancer. Obviously pleased.

Got scanned today

So I went for the first post-treatment PET scan today. For those who don't know, a PET scan is a 3-D look at metabolic activity in your body. It's a usefull diagnostic tool for my type of cancer. They inject a glucose solution with a radioactive tracer and that will be absorbed preferentially by the more metabolically active areas in your body. The bottom line on this is that any residual tumor mass should be just scar tissue, and thus should not "light up" at all on the PET scan.

This was actually my most pleasant PET scan. I must be getting good at it. I didn't have to take any contrast home (the horrid Barium OR the less horrid but still bitter gastrograhpin (sp?) ), as they administered something on the spot that basically tasted like water. 2 glasses, no problem. They moved me through quickly and I was able to finish up w/o any delays. The whole process still takes a couple hours. They have prep work to do and they wait an hour for the glucose to be absorbed by your cells before the scan.

I had blood drawn beforehand so I went back up to the doctors office afterwards to get the counts. My WBC counts were low as expected. That's become routine a week and a half out of chemo. For those who know, WBC: 0.86, Neutrophil: 0.1. I love it when the result sheet says "Critical results called and verbaly read back ..." So they gave me 300 mg of Neupogen and sent me on my way.

Expect results when I see my doctor on Thursday. Looks like no rain the next two days, so I expect I'll get another bike ride in. Curious what the bike rides become when my red blood counts recover. Doctor said that would take about a month. I could definitely use some more hemoglobin.

Finishing Up

My last chemo treatment is tomorow (Friday). Saw the doctor today and spoke a bit about follow up. Given the encouraging PET results so far the presumtion is that the post treatment PET in two weeks will be negative and that will be it for treatment. No radiation follow up. My hematologist prefers to avoid radiation exposure unless there is a clear clinical indication, and given my interrim PET results so far she doesn't see that. I received similar advice from the researchers at the NIH before I started treatment so I'm with her on this decision, given what I've heard about short and long term side effects from radiation.

So, I've got the scan in two weeks, then monthly folow ups with the doctor for blood work and symptom checks. Limited scans durring follow up (3 month, 6 month?). Again, looking to avoid unnecessary radiation. If there is a relapse she said it's not critical to catch it early.

I asked about recovery of Red Blood counts and they thought around a month, but that doesn't necessarilly translate into "back to normal" performance. We'll just have to see about that.

Bottom line - the end is in sight and I can look at checking back in to a normal routine.

Thanks to all family and friends who offered any support durring this time. It's all appreciated more than you know (certainly more than I've expressed).

Let's see if I can keep the 10 lbs. off. I know I should climb much better at 160 than 170.

Second Wind

There is a light at the end of the tunnel.

Second to last treatment tomorrow. Lately I've been sort of dreading them. Been feeling the cumulative effects, even durring treatment. Been needing extra meds while there.

Well now the end is really in sight. Thought back to my consults before treatment. Especially the part where the docs said to be most effective these treatments need to be on schedule all the time. Back then I thought "Hell yeah, well sign me up!" Easily said then, but when I was in the middle it felt like a L O N G road.

Now I feel like I've really got it behind me. If you want a cycling analogy I'm on top of the gear. I've done my treatments, infection control, and forgone vacations. I became my own advocate and, along with my medical team, managed this ... thing and all that goes with it.

People tell me I've handled it well, even the one's who got to see me as a mean, grumpy SOB with no patience for even polite conversation. I handled it the only way I could . It's a back to the wall situation.

Now it's just tomorow, and then the last one in two more weeks.

Time to finish.