I got an X-ray last week

So after getting sick a few weeks ago I had a cough that just wouldn't go away. 2 weeks of that had me calling my Oncologist. I didn't THINK it would amount to anything, but 2 weeks is one too many for me, and before I was diagnosed my main symptom was a persistent cough. Besides the cough, the last time I exercised (a week ago monday) I was only good for about 30 minutes and I had some chest pain at the radiation site when breathing heavily. It's about the weakest I've felt working out and a marked decline from my current levels of performance.

She ordered the x-ray which I was able to get Friday morning, before a scheduled follow up with the radiation oncologist. My regular doc thought it could be some scaring from the rads. When I saw the radiation doc I mentioned the symptoms and exercise difficulty, but didn't share this info. I don't want to get in between them, and at that point there were no results. He listened but gave no indication he thought it was radiation related and advised me to have my med. onc. follow me on it.

Friday I get a call from my med onc. She said preliminary results showed nothing related to the cancer. Today I got a second call from her nurse practicioner. Again, nothing related to the cancer, but there were apparenly some indications of scaring from the radiation treatment. Standard treatment for this is steroids to control the inflamation, so now I've got another follow up with the rad. onc. to get an Rx for the steroids.

Not sure how I feel about the rad. onc. throwing me back over the fence to medical in light of the x-ray results. They weren't in when I saw him, but he DID shoot my lungs and I mentioned the pain I had durring the exercise to him as well. I thought that might be a meaningfull symptom and it looks like that was the case. Even diminished, it seems I still know my body well enough to distinguish "somethings wrong" from "out of shape."

Even before the results I had resigned myself to stop pushing myself on getting my aerobic fitness back in short order. Even though my schedule didn't seem that ambitious, the way I felt after Monday made me re-evaluate even that much work. I felt I was pushing my body too hard right now for what it had been through. The first thing I've got to do is heal. Heal from the cancer treatment, heal from the cold I got, and, of course, heal from this lung inflamation. Spring will be here within a couple months (probably about the same time this snow finally melts) and I won't have to manufacture indoor bicycle rides. I'll be able to do my thing outside, at my pace. Instead of trying to meet a timetable of NOW I think the best thing is to just ride to enjoy it and let the fitness come as it may. Probably best to put the HR monitor away for a while.

Remember the old Florida commercial line, "I need it bad!" For the first time in my life I think I'm there. A week in the sun would do me just right right now.

I am out of shape

But I'm trying to get back in shape. It's been a slow process, and even though I felt like I wasn't doing enough, what I WAS managing to do would sometimes feel like overdoing it.

I am impatient with this. I know how I feel on the bike when I'm fit. Right now I'm not close to that feeling. At the moment there is doubt as to weather I can ever get back there. Maybe my treatment knocked my aerobic potential down a peg or two.

Today I took my mountain bike up to the rocky trails outside of Frederick, MD. It's something I've meant to do before, but that resolve would evaporate in the morning.

This morning I got myself out of the house. At this stage showing up is much more important than the performance. I just have to hope that will come.

Once I got close to my trails I started to really get excited, remembering past winter rides. It was an unexpected feeling and I let myself enjoy it.

Once I got on the trails reality set in. I felt lacking in power and endurance. I didn't climb well and I took a number of breaks. The first lap was hard. Actually the first half of the first lap was the hardest. It DID get better. I felt good enough to try a second lap. I avoided the muddiest parts for a slightly shorter lap. I felt better climbing. A little.

I was pleased to NOT be wiped out at the end. I was smart today and not only brought some food, but ate it, too.

Still working on a weekly routine in the cold to get some improvement.

Health and fitness - need more of both

So it's been hard finding the motivation and energy to ramp up my fitness like I really want to. My 4 day a week riding ideal has been more like 2 or 3 struggling days, with not a whole lot of miles when I'm out there. Of course it hasn't helped that it's been in the 20's when I have my riding windows. It also hasn't helped that I've been shorting myself on head and hand protection, even though I've got warmer stuff than I've been using (which is pretty good gear in it's own rite).

It also doesn't help that by the end of a full week of work I'm pretty drained. I actually had a full work week last week. I had meant to spend some time on the trainer when I got home on Friday and couldn't bring myself to do it. I did put in time on Saturday morning, but I really had to force it.

To try and help my motivation (and give myself an end of treatment present) I DID buy a new bike - something that will be better for commuting than my current fixed gear steed. Picked it up from the shop Monday and finally finished the build/adjustments today. Maybe I'll get some new bike fitness out of it this spring.

I also just got sick this week. Not cancer sick - just your run of the mill virus/bug whatever. Fought it for a couple days and finally developed a sore throat yesterday that left no doubt. I guess the good news there is I had a scheduled doctor appointment. She took a culture to rule out strep and sent me on my way with instructions to call if things get noticably worse (spike a fever, persistant cough) She did listen to my lungs (as well as Stacey, my nurse) and pronounced them clear.

Funny how I go 6 months with a compromised immune system from chemo and rads only to pick up my first infection on the back end of all of it. Well, systemic infection as opposed to the opportunistic ones that I got.

Since I was sick my doctor is going to push off my next PET scan by a month. Infection can cause inflamation in the lymph nodes causing a false positive on the PET. She felt it was better to wait and get to a healthy baseline for the scan.

I don't have much wrap up for these thoughts. Just that it's no fun to finally get well (well, a qualified well) in the dead of witner. I feel like I'm waiting for the weather to catch up to me.

Last day of the year, last day of treatment

So how strange is this? I get my LAST radiation treatment on the LAST day of the year in which I was first diagnosed. That was pretty cool. When the therapist said 'see you Monday' I replied 'No, you won't!' It was a good feeling to walk out of that room for the last time. And I finally felt I needed to take the day off of work to get some rest. I think the fatigue from the radiation has been slowly sneaking up on me, and it didn't help that since I had to drive to the hospital every day it made finding time to exercise difficult. I do remember having a pre-treatment conversation at the hospital. I was told that the side effects would probably get noticable about the time I was finishing treatment. That indeed proved to be the case. Now I'll get a four (not three) day weekend to start to recover, then figure out a 'normal' schedule come Monday.

So this 'done' is REALLY 'done.' Unlike the 'done' when I finished chemo - which was pretty great on its own merrit. I've done all I can to treat my Hodgkins, and hopefully it has been enough.

I remember in the spring telling my cousin I'd been sick for the whole year. That was right before I was diagnosed. Looks like I'm starting out this year NOT sick. I'll make that trade any time.

Hope everyones New Year also turns a corner for the better!

Got my latest blood work back

Red counts are completely normal. So, no more excuses. Well, except I'm still undergoing radiation to the residual mass. Which, if there were no side effects (and there aren't yet) really botches my daily plans of riding my bike to the subway, since I have to drive to the hospital every morning. I was motivated enough to put in 35 minutes on the trainer after getting home today. Maybe I'll be able to keep up 3 exercise days a week this month so when I ramp back up in January I won't be completely out of shape.

Still looking forward to the day when I can do some damage out on the road or trail.

Thinking seriously about buying a cyclocross bike as a finishing treatment present. Maybe get that new bike fitness boost. Missed it with the mountain bike I built last winter, since I got sick right after it was finished.

I find I've become a boring patient again. Most of my answers to the doctors' questions are "No." Not as interesting as the recent past but certainly not a bad place to be.

It IS all about the bike

Sorry Lance, but if anything has been foremost on my mind for this whole journey it's been getting back on my bike and getting back in shape. Under "interests" on any forum I could write "bicycle" and stop. Unless I got out the modifiers and then it's mountain biking, road biking, tandem, fixed gear ...

When I started treatment I was out the day after proving I could still do it. I'd go out for an hour and a half and pay for it, then have my doctor look at me cross eyed as I tried to convince here "That IS taking it easy for me." When I was in the middle of treatment I would wait for the day when I felt good enough to do some kind of ride. Sometimes I went out a bit early and felt like I had no gas, only to find myself enjoying the summer day nonetheless as I finished up. Near the end of chemo I stayed off the bike for 3 weeks while battling a bad case of hemoroids. When I got back on I'd debate each turn wondering if it would take me to a point at which exhaustion would overtake my modest effort.

After chemo was over I had a month of "free time." I rode to the subway to get to work, bemoaned the sunny weekend days I couldn't make a ride for logisical or lazyness reasons, and got thinking on my next purchase.

Now that I'm on radiation for the month, the riding is getting curtailed again. I started to get that sort of stir crazy/funk mood that comes when I don't have regular riding time. Today when I got home (late) I quickly set up the trainer and did about 35 minutes of work. I see my teammates posting rides and long to join them. I have visions of myself charging on, when the reality is I'll be lucky to hang on. I worry about my December "fitness setback" as I dutifully drive down to the hospital for 5 minutes of radiation therapy each day. I see pictures of folks riding to work in the city and I'm jealous of them. I worry about finding the motivation come January to ride regularly enough to have a good fitness base by April.

I hope like hell I'll find the joy in the future I've found on the past when every ride was something to look forward in the beginning to and be proud of in the end.

Next Stop, Radiation

So it is decided, I will have consolidative radiation treatment now that the chemotherapy is over, even though my scans were "negative" for cancer. I didn't think this would be the case earlier on. The medical oncologist I worked with at NIH and my current hematologist all warned against radiation therapy for someone my age. They cited the long term side effects of radiation as being significantly more dangerous than those of my chemotherapy regimen. They had me convinced that once I was done with the chemo that would be it.

As I neared the end of chemo I took another look at the role of radiation. I brought it up with my primary dr. near the end and she thought I should speak to a radiation oncologist at the Cancer Institute. I had that consult and he made some compelling arguments in favor of it. First, it IS the standard treatment protocol for the stage/presentation of my disease. Second, the impact of current targeted regimens is much different than the long term historical data which is mainly based on higher doses, and longer durations where radiation was the primary therapy for Hodgkins. Third, the impact of second line or salvage therapy would far outstrip that of targeted radiation should I relapse, not to mention the short term pain/suffering of that treatment.

In the end it felt like the most responsible course of action to take was, in fact, to go forward with the radiation. My final concern was weather or not my heart would be in the field of treatment which could put me at significant risk for cardiac damage; that's a big deal for me since I've got a family history of heart disease and it would really impact my cycling for the rest of my life. Call me short sighted, but it's just so much a part of me. That's my escape/therapy/etc.

Spoke with the radiation oncologist yesterday and got good news on the plan. The duration and dosage were even lower than I expected, the heart was completely out of the field, and there was minimal lung involvement. In fact, he said if the heart WAS in the potential target area he would likely have recomended against going forward. I was already fairly convinced but this sealed the deal.

So today I went back to do a dry run on the table. The machine was as described by other hodgkins patients. The procedure is quick and easy for each treatment. The main difficulty is that it's every week day for the duration. That's where the short duration comes into play. I've only got 17 treatments compared to a potential of 25. Much less taxing on my schedule since I'm back at work, now. When I spoke to one of the therapists afterwards she thought that by the time I noticed some of the short term side effects I'd be close to done!

So I get started Monday 17 treatments for a total of 18 Gy. I should be done by the end of the year.

Of course, I've found out on this journey that you're never really "done." But if your lucky, you wind up with a nice 40 year break!