Thursday, December 31, 2009

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!

Tuesday, December 15, 2009

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.

Thursday, December 10, 2009

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.

Friday, December 4, 2009

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!

Wednesday, November 25, 2009

Looks like I'll be getting the radiation

After another consult with my primary Hematologist I went back to Radiology to start the mapping process today. Basically they take a CT scan and fuse that with the first and last PET scans to determine where to target the radiation. While I was on the table after getting the scan the Radiation Onc. came in and filled me in a little bit more. BTW, how is it that doctors have this peculiar trick of timing conversations while you're in the middle of a procedure? I think the tech was busy giving me the reference tatoo marks (poke, poke) when the doc was talking to me. Apparently he has at this point spoken with my primary doc. and they are in agreement that this is the right course of action. He caught up again with me after I was off the table, and I did mention that I had concerns about my heart being in the targeted field. That's a big concern. I've got a family history of heart disease, but I'm also anxious to get by bike fitness back. It would be a big deal if this treatment was likely to damage the heart muscle. He said it was unlikely that the heart would be involved. If there was a legitimate risk of cardiac damage I'd be likely to forgo the rads and take my chances that the chemo did its job.

I'm still not thrilled about getting the rads, but with both docs on board (especially considering my Hematologist has a bias against radiation) it seems like the smart decision. The scheduling is going to be a pain, since the treatment is daily for 5 weeks and my ability to ride my bike to the subway is going to be nil while in treatment. Plus, I'm feeling pretty close to normal now, getting my fitness back, and this is going to be a step back. Of course in the grand scheme of things, it's a blip on the timeline. But it is an inconvenience in the immediate future. I've been enjoying PRETENDING I was finished with treatment, but I had come to realize that that probably wasn't the case.

Going back to see him and get the details of the treatment next friday. That seems more important now than I think it will ultimately be. Bottom line on this stuff is "show up on this schedule and we'll do our thing." So I guess my latest finsh date is early January.

Sunday, November 15, 2009

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.

Saturday, November 14, 2009

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?

Thursday, November 5, 2009

PET Scan Results

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

Tuesday, November 3, 2009

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.

Thursday, October 22, 2009

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.

Thursday, October 8, 2009

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.

Friday, October 2, 2009


October 2nd today.

It's a confluence of important 10/2 dates for me.

1969 - My SIL Judith was born. (I THINK she's 40. I have enough trouble with my own age so I'll just have to hope I'm right)

1971 - My brother Adam was born. I'm sure about this year.

1996 - Lance Armstrong was diagnosed with testicular cancer.

The last event MUST hold the most significance for me, based on my behavior today. I went in to Radio Shack (heretofore known as The SHACK ) to pick up yet another item for less than $10. Wouldn't you know it they (of course) had LIVESTRONG bracelets. I haven't had one since I lost the one I was given by my brother in law years ago. BTW, it's not HIS birthday. Spent the extra dollar to support the cause. I'd been meaning to get another one ever since I spent the gift card the folks from work got me on some Livestrong gear several weeks ago, but DIDN'T pony up the extra dollar for the bracelet at that time. Here's how cheap I can be: I had a hard time even buying the gear (did I mention I had a gift card?) given you pay a bit of a premium for the foundation.

Funny story on livstrong gear. A couple years ago I got my brother a 10/2 t-shirt for his birthday.

Also went on a bike ride today. First time in weeks. Didn't ride after my last treatment due to some complications. Glad I went. I always like to get out on the bike on holidays/birthdays/etc. This is another important date to add to the calendar, now.

So happy birthday to Judith and Adam. Happy bike ride day to me.

Tuesday, September 29, 2009

I say ... Embrace the Lethargy!

So after 4 months of chemo I've finally reverse trained myself down to the point where my body is not actually craving the excercise like it once did. It took months and a good number of over ambitious, yet under-energetic bike rides but I'm finally there! And, conveniently enough, the timing has meshed very well with some annoying side effects that would have kept me off the bike anyway, not to mention that it doesn't particularly matter to me NOW to grab a ride at any opportunity since I've only got 2 treatments left.

So I say bring on the 2:00 catnaps the week after treatment, and if I happen to feel up for a ride on the off week - well, if I don't put forth the effort I don't have to face the reality of my diminished cardiovascular abilities.

Why not spend a few weeks seeing how the OTHER half lives. Couch surfing and remote control curls can't be all bad, not if millions of Americans are already living the dream.

I just worry I'm too late to the game. If I'm not carefull I'll find myself sneaking out for a bike ride between the end of treatment and the final turn of the season. Then it'll be a long cold winter of fitness building. What a waste!

Tuesday, September 22, 2009

Fun with insurance

Actually, dissability insurance.

So I've been receiving dissability payments for many weeks. The doctors office filled out all of 2 pages of paperwork and the claim started paying no problem. Then the checks just stopped coming. After a week of waiting I called my HR person. Story she got was the insurance co. claimed that they tried 3 times to fax my Dr.'s office for confirmation of continuing clinical necessity (or something like that). They also claimed to have left me a voice mail at home. Well all my voice mails go to my email and I had no record of that call (big surprise). Got the name of my claims person and she gave me the story about the 3 faxes. After getting additional contact info from her (fax, etc) - gonna play by the rules as far as I can - I asked why there was even an interruption given the original paperwork from the Dr. stating 6 months of dissability due to treatment, side effects, etc because of CANCER. That seemed to shake her up a little bit: "Oh, well, um, we'll see if we can get a check sent out tomorrow." WTF ?? Sounds to me like someone was just too lazy to actually review 2 pages of paper work and/or do any meaningfull folllow up (what no PHONE CALL to the Doc?)? In the meantime I contacted my Dr.s office with the necessary contact info so they could also follow up and send anything requested.

These conversations all happened Wednesday of last week. Yesterday (Monday) there actually WAS a check in my mailbox. And for two benefit periods, making the payments current.

I would so love to know the whole story behind this little escapade.

Friday, September 11, 2009

Countdown is on ?

1.5 cycles to go - that's 3 treatments after the one I did today. A bit on the rough side. Stomach was not happy. They had to give me some xtra nausea meds while in treatment - IV ativan - with instructions for more (plus the normal suite) at home. My Doc came by and she scolded me for suffering in silence. Woman knows what she's talking about.

At least I got some decent sleep last night. Let's see how this one goes throughout the week. Always a little different. Saturday good? Sunday and Monday ???

Didn't feel like answering phone calls today.

Perhaps one more "LOST" episode tonight.

Thursday, September 10, 2009

CT Results are in!

All good. Tumor shrank a litlle more. All residual mass appears to be necrotic (dead) tissue. Big relief! I frettted the most about this one - probably the most fear I've had since day one. I took home a preliminary report and I'll get the final one shortly (next week?).

Off to the home stretch. 4 more treatments starting tomorrow.

Sunday, September 6, 2009

Found a good size Lymphoma message board

Reading through it the past couple days.

Too many stories about recurrence/relapse/refraction.

Kind of freaked me out with CT results coming Tuesday.

Friday, September 4, 2009

Another Scan

I really am disliking the scans. After the last interim CT/PET (where I left the contrast on the side of the road) they gave me the "new and improved" contrast for this interim CT scan. I could still taste the bitterness through the gatorade I mixed it in. And I'm finding it inevitably throws me off for most of the day. Chemo belly does NOT like to process any of it. Not to mention the IV iodine (?) they give you durring the scan. At least it wasn't a PET. 20 minutes of arm over head crucifixtion in a claustrophobic tube. Save that fun for when I'm done with treatments.

Hopefully get a good news call on Tuesday from my Nurse Practicioner (Stacey).

In the meantime I think I'm ready to get back on the bike this week. Put out a request for riding partners just now. Let's see if Josh will step up on this three day weekend (that's right, I'm calling you out!).

Monday, August 31, 2009

Got my yellow on ...

No, not the lance bracelet. Just finished chemo # 8. Skin always goes a bit yellow the day of. I had my SIL Sarah take a picture. Second trip for her. She's real good at it! We both have a good time when she's there. Field trip to the Cancer Ward!

Today was Get Shorty and more of Season 1 of Sopranos.

Trouble sleeping again last night. Note to self: Ativan helps to shut the brain down. Next time take it before 2:00 am. Chemo sucks on short sleep. Actually, it sucks regardless, but more if you're tired.

WBC were back up. Neutrophil shot on Thursday did the job, and there were ultimately no ill effects from Friday's bee sting (aside from the usual).

I've got another CT scan on Friday to check the size of the tumor. No PET this time

8 down, 4 to go. Starting to feel like I'm getting there. whoopdee fuckin' do

Thursday, August 27, 2009

Question and answer

Conversation from the autobus on my group ride yesterday.

The other Chris (just met her that evening): "Are you racing?"

Me: "Not this year, I've been sick."

The other Chris: "What is it?"

Me: "Hodgkins."

The other Chris: "When did you finish treatment?"

Me: "I'm stil IN treatment."

The other Chris: "And you're still out here??"

Me: "When I'm up for it, it's the best place to be."

3 sticks and you're out

Today's visit: the phlebotomy lab was W A Y backed up. Took an hour for my to get my draw. Normally it's 5 minutes. Some sort of training debacle there.

When I finally got in it took the phlebotomist 3 tries. It's not the multiple sticks I mind so much, it's the digging around while my veins roll away from the needle. And trust me, I got some good veins - "juicy" they say (though I don't think that's an actual medical term).

Anyway, when I went back with my Nurse Practicioner and Doctor, we looked at the results on the computer and my Neutrophil count was 0.0. If my math is right I think it was actually 0.04, but they round the counts off. For those who don't know, neutrophils are the particular white blood cells that are your first line of defence for infection.

They gave me a shot of neupogen - a hormone to boost WBC production - but they decided to postpone my infusion until Monday (originally scheduled for tomorow), but we're going through with it regardless of the counts.

So I called up my Sister in law - she was going to take me to this treatment. To my surprise she said she could do Monday! Tomorrow we're going to try for a bike ride, weather permitting.

So I get a bonus weekend of not feeling crappy. I'm probably going to be thrown off next week though. I usually have an idea of how I'll feel based on the day of the week after treatment. When I went just one day early for the July 4 holiday it threw me.

Wednesday, August 26, 2009

Betrayed - I don't think so

It seems to be a constant refrain from cancer patients - "My body betrayed me."

I'd have to go the other way on that. Looking back I'd consider my body a worthy ally throughout this fight.

So, what, one cell went bad to start the tumor out of how many? Trillions?

Not unexptected, especially having an Uncle who had the same disease given what I know (albeit limited) about probability, and medical probability specifically.

Since starting treatment my body has done the following:

- First and foremost: responded exceptionally well to treatment

- Handled 3 necessary surgeries within a month

- Handled the chemo relatively well (despite my not so occasional complaints)

- Allowed me to continue to ride the bike, and I would say, effectively given what it's been through

- Maintained a stable weight

- Remained relatively free of complications - I have NOT been hospitalized since starting treatment

Betrayal is certainly not a word that comes to mind considering that record. Until now I've basically always been healthy, and always counted on my body to stay healthy and perform.

I never thought I'd need it to perform in this way, but I certainly expected it to rise to the occasion when I found I was sick.

And it hasn't let me down.

Tuesday, August 18, 2009

Zombie Day

Slept late then passed out for a 2 hour nap in the afternoon. Had to walk myself around the block to TRY to find some energy - maybe get the heart moving. Not sure it worked :).

Sunday, August 16, 2009

Another day after Ride

Went off-road with Claire. These rides are starting to feel like what my doctor wants me to do. Low end of moderate, but still one and a half hours. I made sure to cut it off so it wouldn't be two. She still helped me feel fast :).

I'm being more purposefull about drinking water. It was hard at first - the taste. But you have to go after it. Gatorade helps, and I'm helping to flush out better. We'll see how Monday, Tuesday go. Monday is the first day without the EMEND. So far I'm getting through on Zofran and Ativan. Compazine at bed.

More pharmacy nonsense today. Finally tracked down my refill and got it picked up. At this point MY word should be good to get the regular stuff filled! How's that for healthcare reform?

Friday, August 14, 2009

Back from #7. Into the second half.

I'm thinking Zofran, Compazine and another Ativan before bed.

Saturday, August 8, 2009

Another Mountain Bike Ride

I LOVE being out there when I am able. Early on I wasn't sure if I had the energy to ride off-road. It quickly became my preferred option. And thanks to MORE for the work they do keeping MY trails open and available.

Monday, August 3, 2009

Bad Day

Didn't ride on Friday - sun was too intense.

Woke up this morning with stomach cramps. And had to go downtown for bloodwork. Took a Compazine even though I don't like the way they knock me out. Wound up going all in on the nausea meds today. Just didn't feel settled at all. Felt lucky to eat.

At least the labs were fine.

Looking to fall asleep now.

Friday, July 31, 2009

They took an iron count before chemo today

What with the "anemia scare" from the last office visit. Nurse asked if I wanted to guess the result. I knew it was fine. Turns out well above normal. Not surprised after Wednesday's ride.

That was #6 today. Half way home!

Though I'm starting to feel like Dumbledore on that damn island!

Thursday, July 30, 2009


I've found that I generally don't feel better when I eat anything I want. I was more or less given those instructions by the Dr. to keep the weight up but I've found I feel uncomfortably bloated. Not sure the stomach likes doing all that work. Felt better to back off the calories as this week went on. I'll see if I can keep my weight around 160.

Wednesday, July 29, 2009

Sometimes I can still fake it

Went out with my Wednesday night crew tonight. Felt good enough that I WANTED to go riding, so I just caught one of my regular rides. At the back going up the early hills but everyone waited and a couple folks hung back with me after the regroup. The group broke in half on the way back and I was just with Kevin and Nat. Kevin called me a "faker" when I let loose on a rise that was just the right length towards the end. Felt good but tiring - definitely against Dr's orders to take it easy, that one.

Tuesday, July 28, 2009

Anemic too ...

Well my red cell counts have always trended a little low, but the iron counts dropped enough to qulaify my as anemic. I've got some "homework" to do to chase that up.

Meanwhile got on the bike to do a coulpe errands close to the house.

Monday, July 27, 2009

Just because ...

Just an FYI, please don't get too depressed for me when I talk about how crappy I feel after treatment. It's mostly just a clinical observation on my part and if I'm out and about I'm probably happy to be feeling as well as I do at the moment.

I can still outride most of you.

Wednesday, July 22, 2009


Took the kitchen sink approach to the chemo this round. I think my medical team has been encouraging this, I've just been too thick to get it. Used all the the drugs I had available to get through the rough days. Seemed to work pretty well. Backed it off today but was just flat as a pancake. Didn't feel sick, just felt completely lethargic. Not necessarilly a bad thing considering the alternative of a mild to moderate pervasive sick feeling. I'll have to discuss this at my next appointment. Might actually be the way to go.

Thursday, July 16, 2009

Good news

Got preliminary results from the PET scan yesterday. Results "better than expected" according to the preliminary report from the nuclear radiologist. The activity in the main mass has been greatly reduced - currently well below the threshold for abnormal activity.

I'll get a final report next week but the bottom line is the current course of treatment is getting the job done!

Wednesday, July 15, 2009


Four treatments in and what finally empties my stomach? Third bottle of Barium Sulfate contrast I was trying to choke down for a PET scan today. I had one last night and a second one at 5:30 this morning. Took one swallow and within a minute I was pulling off to the side of 270 to get rid of it. Wasn't a problem in the end to do the scan, but that junk does not make a quality breakfast!

Should get some results from the scan tomorrow. Big progress check. Hoping to see this thing really knocked down.

Tuesday, July 14, 2009


Back out on the mountain bike today.
Rode my plan feeling just about normal. Kept the speed up, middle ringed all the regular hills, and actually felt like I was dragging 160 lbs when climbing - which for me is just fine. Heck, better than fine, usually it feels like dragging 170 lbs.
Took my usual break at the abandonded Willys.
Got back to the parking lot and did NOT feel done so I went out and added another 30 minutes.
Felt good enough to pretend like I had some legitimate form!

It's great just riding to enjoy the ride. Sometimes that gets lost when in "training" mode, but I'm certainly appreciating the extended opportunity to just ride for fun. That IS the best reason to be out in any case.

Friday, July 10, 2009


Eight days out. I finally went on a ride today. Mostly because it was eight days out. I almost feel like it's four, even though I THOUGHT I turned the corner on Wednesday. I had no real motivation beyond that go get out.

I had NOTHING to give this ride. No strength or power. Everything required an effort. I took a break after some singletrack at Shaeffers.

If this keeps up there are going to be a lot of 15 mile rides this summer.

And I noticed it was a great day out. Perfect for riding I thought after the break. If I had a chance to ride today and didn't that would have been a shame.

Back home to watch some moore of the Tour now for a bit.

Before I ride to lunch at 2.

Monday, July 6, 2009

Loving the diet

I SHOULD spend more time at Giant ...

Thursday, July 2, 2009

Hells Bells

Jen gave me a "G" bell from the kids' muical bell collection to call for any help after treatment today. I wanted my brownies so I rang it and asked her to bring up a "B" bell so I could use the appropriate bell to request the brownies. Good system!

Wednesday, July 1, 2009


Blood Work - check. WBC/neutrophil were low but liver enzymes back to normal.
More pain meds - check. Some of the sores are back. Upped the anti-virals also.
Bike ride - check. In the rain no less. My Dr. would kill me if she saw the HR numbers!
Packing for treatment now: drugs, lunch, laptop, med list. After this one we'll do the PET scan to check progress. I told my Nurse Practicioner it should be at least a week out. No way I'm keeping 3 bottles of contrast down the week after chemo.
Ned will be up hear at 7:00 to take me down. Yet another volunteer for the "field trips."
Plan on riding Friday. The day after rides seem to work out.

Saturday, June 27, 2009

Got some rides in

Man it's good medicine! Got out on the mountain bike Friday . I was wondering how that would work out, since there's always hard work to be done. I was able to recover enough between the climbs and such to make a good time out of it. Not fast but capable

And then today on the road. Hit a stretch of road half way through and felt like turning it on a little. THAT felt good! Tried not to overdue it. My Dr. always looks at me funny when I tell her I was out for an hour and a half. I don't think she believes it when I say that IS an easy day for me.

If I'm not carefull I might come out of this with some fitness. AND a good climbing weight!

Wednesday, June 24, 2009

Back up for air

Feeling like I've turned the corner about on schedule. The MO seems to be 4 "feeling kinda crappy" days after Friday treatment, and then getting back to normal around Tuesday or Wednesday. Did a bike ride the Saturday after treatment (the really "crappy" stuff kicks in on Sunday) with no apparent ill effects so I'm going to try to continue that. I suspect it could only help metabolize the chemo out.

Starting to get pretty conversant on the blood work that gets done a couple times a week - looking at WBC counts and liver function enzymes.

I think I've finally learned not to plan any visits early in the week after treatment. I just never feel good enough to pull it off. An unexpected bonus has been reconnecting with folks from the past, and making some new connections as well.

Monday, June 22, 2009

My brother Jon just left for home

He had made his second visit from Utah in a month to help out and spend time with me. He gave up a week long cycling vacation in Colorado to come here. Yet another example of extraordinary efforts from many folks to help me get through this.

Friday, June 19, 2009

A rough day at Chemo

Chemo Breakfast 1

Only 1 doughnut!

Turned the corner on the mucositis

Looks like I've turned the corner on this. Didn't NEED any drugs overnight to deal with the pain and I'm reducing the Oxycodone today without any problems. I'm still getting my outstanding prescriptions filled while I'm here at the Hospital Center today. I do NOT want to get caught short should it (or something else) come up again.

Wednesday, June 17, 2009

Insurance/Pharmacy Rant

Needed 2 drugs. One (for pain) Giant can't fill until Monday or Tuesday. The other (highly marketed heartburn drug) needs special insurance pre-authorization. Called CVS and they won't even deal with the pain medication. WTF?? It's your JOB to fill prescriptions. Some treatments CAN'T wait 5 days!!

Tuesday, June 16, 2009

More side effects - bad

Mucositis: inflammation of a mucos membrane.

Sounds fairly innocuous, but I can assure you it's not. It started out as a couple sores in the mouth - result of a compromized immune system not able to fight off common viruses.

On Sunday it started to become a real problem. Went to lunch with my brother after a bike ride and had a real problem eating a sandwich because of the pain in my mouth. Got to my mom's and raided her leftover Vicodin. Ate them like candy that night trying to relieve the pain. Marginally helpfull.

Had a Dr. visit anyway the next day. They wrote me a bunch of prescriptions for percocet refills, washes to numb the mouth topically, and stronger anti virals.

Went to work for a couple hours and suffered through 2 hours while I waited for the local pharmacy to fill what they could. At the pharmacy I got a call from the Dr's office. My liver function was elevated so I should NOT take any more percocet which has tylenol in it. They had an Rx for Oxycodone that I would have to swing by the hospital to pick up. Got the prescriptions that were ready at the parmacy and used one of the washes immediately, getting some relief. Made it to the hospital in time to get the Oxy Rx.

Headed over to Bethesda to meet my cousin, and fill the Oxy prescription at a local Giant. When that was filled, I drove over to the restaurant. Parked, downed 3 Oxycodones and used the wash again. Dinner was still painfull to eat, and half way through I went back to the car for another wash.

At home I continued with the meds but had a hard time getting to sleep. Finally went down after 12:30 am.

Today woke up before 6 with my mouth on fire. Absolutely the most discomfort I've had in this entire experience including the 2 surgeries. 8 out of 10 on a pain scale. Hit the wash again, and took more oxycodone. Emailed my Dr's office (she has a Nurse Practicioner) and let them know about my pain. Even with all the meds I was not getting ahead of it. She called me back shortly after 8. Told me to up the dosage of the Oxycodone and continue with the wash. Offered to write an Rx for liquid Morphine if my meds on hand didn't get the job done. It took a while but the meds finally got me a little bit ahead of the pain.

Wound up taking a nap between 2 and 4 pm. Needed the sleep but woke up behind the 8 ball again. Everything had worn off. Started all the pain meds and washes back up and took hours to get enough on board that I felt ahead of it again. Mouth pain is the worst. There have to be tons of sensitive nerves and each one of them felt irritated.

Going back to the Dr. tomorow for blood work. If tomorow morning is anything like today I'll hit the pain meds first thing and have my brother drive me down. At this point I'm eating Oxycodone almost like M&M's and having marginal success dealing with this discomfort. If it is bad tomorow I'll take the Morphine script home and hope that works better until this resolves. They DO have me on stronger anti-virals and another medicated wash to treat this topically as well.

Saturday, June 13, 2009

Aftermath - Second treatment

Well, this time it was seemingly a longer "feeling bad" period, but not quite so intense as the first time. I tried to go to work on the Tuesday after (treatments on Friday). My dad drove me in, but before we even got half way I had him turn around. Took a 2 hour nap when we got back to his house. I think I need to turn off the alarm clocks for the duration. If the body wants sleep, it should get it. Felt like I was a day or 2 behind on my "chemo recovery" from the first one.
Also, I didn't do any riding the weekend of this time. The first time that Saturday bike ride may have helped metabolize all the chemo out of the body. I'll have to give it a go next time if I'm feeling up to it. Had a bad riding jones by Wednesday and dashed out for a 5:30 group ride only to have the sky oipen up with thunder and lightning.
Finally got out today for an hour and a half. Slow, but worth it. Hit the spot!
Got treatment partners lined up through the middle of September now. My brother in law set up a shared calendar and folks have been lining up to come on what I call the "cancer field trips."
Headed over to a family gathering shortly. Unfortunately Johnny's family has to stay away. One of his kids just HAD a fever and one currently HAS a fever. Can't risk the chance of infection given the WBC roller coaster ride I'm on. Good news on that front at least. Those numbers were back to the low end of normal on Monday's visit.

Wednesday, June 10, 2009

Treatment - cont V

June 6

Thursday I actually had to leave work early. I had an onset of pretty sever joint pain - lower back, hips, etc. and thought I felt a fever coming on. I don't work in the best part of town so if I had to go to the hospital with a fever it was going to be in my neighborhood. Got to my parents house and the temp was OK so I downed 2 emergency percocet I kept on hand. Joint and muscle pain is a known side effect of the neupogen. I could feel it the next day (Friday) but not enough to warrant any more meds. Asked the nurse in treatment if it was OK to take some advil if it flared up again and she said that wouldn't be a problem.

Round 2 in the books as of Friday. So far so good. No problems with breakfast and the OJ keeps the "taste" down. They did a repeat on the CBC and the neutrophil component of the WBC is still down, so I go back in on Monday for more blood work and possibly another neupogen shot.

Treatment - cont IV

June 3

White Blood cells dropping like flies! The important count, the neutrophil dropped way down just between Monday and today. This is where the risk of infection goes up. Gotta be extra careful and they gave me a booster in the office, neupogen (sp?). Still going forward with treatment on Friday. My LPN told me “The nurses might freak out when they see the blood counts but we’ll make sure they know the treatment goes as scheduled.” On my regimen, ABVD, the best outcomes are achieved when the treatments are given on time, every time. Feeling better and better this week.
Got another bike ride in today. (Thanks Michele!). Bonus of the 1:00 appointment – the rest of the day is free!

Treatment - cont III

June 2

Got my 5 pounds back. I was hovering around the low 160's but after the first round I dropped down to 156. When I went in to see the doc Monday she said "You are NOT on a Diet." Doing my best and back up to 161 tonight.

Another Surgery picture

Another Surgery, another pic.

Last thursday they put an access port in. Small incision on the other side.


Treatment - cont.

May 27:

Bonus! Had good blood work today. They're gonna let me bag the Friday labs!

Treatment - the marathon week

May 26

Last week was 5 straight days at Washington Hospital Center.
Monday: Consult and blood draw.
Tuesday: Bone Marrow Biopsy. This is done from the Pelvis. My Doctor actually performed the procedure. They start with IV Fentanel to “take the edge off.” Had to ask how long that would last since I drove in from work! (Mom followed me home after all was done). Then a local anesthetic at the site. They use a stiff big bore needle to aspirate the bone marrow. Better than the drill I had in my minds eye. Just some dull pressure and burning for the procedure. Then they sat me up for an hour just to watch me before going home.
Wednesday: Fast Day #1 for the PET scan. 8:00 am. They use a radioactive glucose solution to measure metabolic activity so they need you fasted so that the cells suck it up. It’s like a CT scan except it takes about 20 minutes. Worst part is they have your arms over your head. If they are not perfectly supported (and mine were not) it quickly feels like you are being crucified with your arms just hanging off your shoulders. I held out for most of it but they had to talk me through for the last 4 – 6 minutes.
Thursday: Fast Day #2 for the medi-port insertion. 5:30 am at the hospital. That’s basically an easy access port that lives under the skin – accessed by a special needle. Placement is just below the collar bone. Surgical orders said “Left, maybe right.” I reminded the surgeon when I saw him that the left was still recovering from two biopsies, and right would be best. It wasn’t general anesthesia, but as far as I was concerned I was out. Only one hour total in the OR.
With the 2 early fasting days by Thursday afternoon I was done. Crawled into bed by 8:00 pm to get rested for …
Friday: Day 1 of chemo. My twin brother Jon and family was in town and he went down with me. He’s a biologist by trade and basically knew more about the drugs than the nurses. He was all over his laptop looking stuff up in the morning. The treatment is 4 drugs, all given in sequence. 2 by IV push, one 20 minute drip, one 2 hour drip. They loaded me with 2 bags of saline for hydration and gave me a small test injection with one of the drugs in my belly to test for allergic reaction. Burned a bit but nothing remarkable. Good to go. Nurse showed up gowned and gloved with the first drug. I asked “Is that for my protection?” already knowing the answer. “No, it’s for mine,” she told me.
First three drugs went in with no noticeable effects. The fourth one, Dacarbazine, took 2 hours to infuse by IV. This one, on occasion, was a bit “burney” going in the vein. I let the nurse know and she upped the saline to dilute it and it helped a bit. Apparently this will ruin a peripheral vein, as happened to a friend of Claire’s who is currently under treatment for the same disease. We were done by 2 and out by 2:30.
Saturday: Slept in for the first time in a week. Didn’t feel great but felt good enough. Took the nausea meds and called my brother for a ride. I had him captain my tandem for a 22 mile ride through Patomac. He did most of the work and we took about 1 hr. 20. That MAY not have been the best thing to do (more coming up). Later, went out to dinner with him and another friend downtown. Ethiopian. Not the best. Also, MAY not have been the best thing to do. Still feeling tired, taste is off. Bed by 10:00 pm.
Sunday: The bad day. Woke up at 7 feeling about the same. Well maybe not quite the same. Tried to eat a pancake for breakfast. By 9 I was having stomach cramps and had vomited twice. Called the On-call doc and he sent me to my medicine stash for Compazine, which is specifically an anti-vomiting drug. It also tends to knock you out. I spent the rest of the morning and most of the afternoon stretched out on the couch. No energy at all. Around me an army of family was taking care of the kids, the house, me, and everything else. Fortunately, the drug did it’s job. In the meantime, I’m feeling a bit warm and they’re taking my temp every couple hours. Well it hit 101 around 4 or so, just as I was coming out of my Compazine stupor (and taking another go back in). Automatic fever protocol. This was made VERY clear by my Doctor. Go to the ER, where they do blood counts, cultures and Chest X-ray looking for neutropenia (low WBC) or infection. Nothing found, just orders to follow up with my Doc. Today. ER trip was 5 – 8:30. Got home and actually had a bit to eat before going back to bed. You see I was all tired out from laying on the couch all day.
Monday: Woke up. Took my Compazine. In and out until 3. Felt good enough in the afternoon to walk the dog.
Today: Decided to try work. Felt a little shaky in the morning but it worked out alright. Left at 4 to beat the traffic.

This weeks adventures:
Wednesday: Surgical Follow up at NIH, then a trip to WHC for blood counts.
Friday: More blood work at WHC.

I have to say I’ve been very impressed with my Doctor, Vera Malkovska. She’s the chief of hematology at WHC and was highly recommended by the Lymphma team at NCI/NIH. She seems to be a strong patient advocate. Her philosophy about the nausea is that it SHOULD NOT be a problem with the drugs available now. And if it is, call her or her team. She was there Tuesday to perform the bone marrow biopsy, and she stopped by Friday during treatment. Funny story – she said if I go out riding with friends to tell them I might “check out” half way through the ride if I felt tired. She’s from Eastern Europe (Czech?) and wasn’t familiar with THAT colloquialism. I couldn’t help telling her the OTHER meaning of “check out!”

Treatment - cont II

May 22

First day of Chemo

I think I've already figgured out that drug #4, Dacarbazine, is the nasty one of the bunch. It's a 2 hour infusion, diluted by saline, and still can cause pain at the infusion site as it goes in.

Treatment - cont.

May 21

I'll be in the hospital all 5 days this week.
Monday: Consult with my doc.
Tues: Bone marrow biopsy.
Wed: PET Scan - 2 bottles of Barium Sulfate contrast for breakfast.
Today(Thurs): Medi-port insertion (minor surgical procedure) for the Chemo.
Friday: Day 1 of chemo.


May 18

Met with the treating doc this morning. I have a couple of baseline tests this week and then Chemo starts Friday. Every other Friday for 6 - 8 months after that.

Diagnosis - Final

May 13

Got the word today. It's Hodgkin Lymphoma. About what we expected. Treatment sounds pretty standard. They've been using the same chemo drugs for about 25 years on this. Time to move on to the next set of Doctors.

Diagnostics - continued III

May 8
Back home from second biopsy. They got a lot of good tissue for analysis. Worn out and going to sleep in front of a movie. More details later.

May 9

So Thursday I had a second biopsy surgery. The reason for this is simple. They could not get a definitive diagnosis from the tissue taken durring the original procedure. Nothing my surgeon did wrong, just bad luck on what he collected. This time it was performed at the NIH. The surgeons worked closely with the Lymphoma team and the pathologist to develop a surgical plan that had the best chance of getting a good enough sample from the tumor for a definitive pathology/diagnosis. They decided to go through the same incision but lenghthen it and remove some cartilage from between the ribs for better exposure. It was definitely a more invasive procedure. If the first one was like getting stabbed, this second surgery was like getting stabbed with a wooden stake. I spoke to the surgeons in recovery after it was completed and they and the pathologist were very pleased with the tissue that was recovered. They indicated that they collected samples from at least three different areas of the tumor. In fact they communicated with her while I was on the table in just in case they had to take a different approach and go in from the side (thorochotomy).

The recovery was most definitely reflective of a more invasive procedure. The original surgery was an outpatient procedure. I showed up at 11:00; surgery at 1:00, and by 6:00 I was on the way home. This time they sent me to the ICU to recover, and kept me overnight. And it was a LONG night. The pain was significant, and they had me on a continuous morphine drip plus an on demand pump I had a button for. That pump would give me a dose every 6 minutes if I hit the button and I was watching the big clock on the wall to make sure I hit that button on the minute.

The real dificulty in recovery began when my catheter (sp) fell out. I discovered last time that IV narcotics make my bladder clamp down, so even if it's full, it won't release. So not only did I have the discomfort of the surgery to deal with, but I could barely pee, adding a second discomfort. At some point after midnight it got bad enough that I agreed to let them put in antother catheter. My night nurse tried, with no success. Then some of the back up ICU staff tried, also unsuccessfully and with a bit of bleeding as well. At this point they paged the surgeon on call (NOT the one who had done the procedure). He wanted to try again but I had had enough. The first two hadn't worked, and I began to feel like I was working with the "B" team. He went over the various risks of not being able to drain and such trying to convince me but I wasn't having me. Based on my previous experience I told them I wanted to get off the IV morphine and also get on my feet and start walking around. Their way hadn't worked, and I was insistent to try it my way at this point. So they turned off the continuous morphine drip and let me up to walk around. I had a LITTLE success afterwards, putting out a small amount. It wasn't close to empty but it got me a small amount of relief. The nurse wanted me to try to fill her beaker but I told her I was lucky to get anything out, and my comfort was gonna take precedence over her record keeping.

At this point I tried to get a little sleep. The problem now became all the alarms they had me hooked up to. My oxygen saturation sensor kept dipping below 90% which would trigger a bell. I suspected it was not working great, but it could have been my depressed breathing from the morphine so it was hard to tell. Every time I would get close to a cat nap the thing would go off. At one point they put me back on the nasal oxygen. Then the monitor dropped below 80 and I knew something was wrong with it. The nurse changed it and, surprise, my oxygen saturation went back over 95% and stayed there for the duration.

Around 7:30 they finally took out the morphine drip for good and disconnected me from the IV. They switched me to percocet for pain. I had been really laying off the pump for most of the night since I know it was contributing to my bladder problems. Now I was able to get up at will and wallk around, but was still barely moving any urine. When my surgeons came by in the morning we discussed the situation and he indicated that at some point they would have to look at retrying the catheter if things didn't improve. At least there would be a urologist available now to handle it since the nursing staff had such a dificult time of it. My belly was really disteded from the full bladder and they gave me a bladder volume test (some kind of ultrasound machine) that showed I had about a liter retained. I was just about resigned to the catheter when things started to move along It wasn't emptying but I was passing enough volume to get some relief. Things slowly improved throughout the mornig and by lunch time I was in pretty good shape. The last volume measurement they did was nominal, about 14 cc's. I wanted to say "I told you so" to the whole nursing staff there.

After that there were some requisite follow ups to do. Surgeon had to remove a small drainage tube from my chest; then a follow up chest X-ray to check the inflation of the lungs. The surgeons were finally able to OK my release around 5:00 pm, but at that point no one could get ahold of the Lymphoma service to OK my release since I was officially under their care. Even at the NIH, government people shut it down early at the end of the week. Around 6:00 they finally called back with the OK. Got discharged with an RX for percocet and was able to hit the road home with my mom. We got some carry out and got back to the house close to 8:00. Ate a little, took my meds and hit the bed exhausted. Tried to watch TV but I could barely keep the screen in focus. Wife and kids came back from a piano recital shortly after 9:00 (inconvenient timing!) so I was able to greet them before I passed out. Slow to get out of bed this morning but I'm starting to feel normal.

Here's the lates incision picture. Like the last one, only bigger.

Second incision

Funny diversion

April 2

Quote from a motorcycle board I frequent:

'I'm gonna give House and Wilson a call and see what they say."

My Response:
"I've already got Wilson on the case."

Diagnostics - continued II

May 1

So this week I had a surgical follow up and spent some time at NIH. Follow up was fine. No news is good news there. Suburban had trouble with the slides and sent samples over to NIH for a more “expert” pathology. While waiting for those results I spent half a day at the NIH Lymphoma clinic. Got the workup, blood tests and spoke with their leading Lymphoma research Dr. He said it’s either Hodgkins or, well, not. Don’t remember the specific name of the alternative Lymphoma type. If it’s Hodgkins he’s set me up with a referral to Washington Hospital Center, a colleague of his he highly recommends. If it is NOT Hodgkins, they have protocols that fit and can treat me in Bethesda. He strongly suspects that it IS Hodgkins. We expected the final pathology results today.

Well, got the call today. The pathology results are inconclusive. They need to go back in to get a better (larger) sample. Spoke with the coordinating RN tonight. She was starting to get things lined up. Monday will be a virtual bronchoscopy, which is a very high resolution CT; and a pulmonary function test. Wednesday will be a consult with the Thoracic surgeon from the NIH lymphoma center. Essentially, they are taking the diagnostic responsibility on full. They are gathering as much info as possible before the next surgery, which I believe will be video camera aided.

So, the news I thought I’d have today from the biopsy did not materialize. The diagnostic process has been reset to Monday morning.


April 27

Discovered a large mass in my upper anterior chest. 15 X 10 X 6 cm. Pretty large. Growing around my bronchial tubes and some major blood vessels. Initial presentation is suggestive of some type of lymphoma because of the location. Biopsy a week ago included a bronchoscopy. They did a fluid wash of my bronchial tubes and analyzed the fluid for any evidence of lung cancer. None was found. They also took a piece of the mass and the pathology lab has been trying to figure out exactly what it is. The frozen section (i.e. quick and dirty read) indicated some sort of abnormal lymphoid tissue (read Lymphoma?) As of Friday they were having a hard time at the local hospital (Suburban in Bethesda, MD) so they were going to send the slides over to the NIH for some pathology assistance. That's where we are now.

I see my surgeon tomorow for a surgical follow up. Not sure if he'll have any info on what sort of cancer this is. Wendesday I have an appointment at the NIH for evaluation as a potential candidate for their clinical trials. Hoping to have some more answers by then.

Right now the indications are that it's some kind of Lymphoma. Many are very treatable. Unfortunately the Dr.'s have not arrived at a definitive diagnosis.

Oh yeah, now that I've run out of percocet my cough is coming back. Fortunately I'm healed enough it doesn't feel like I'm getting stabbed in the chest. Sneezing is still a little bit of an adventure.

Diagnostics - continued

April 25

No answers yet on the biopsy. Hospital pathologist is sending it across the street to NIH for some help.


April 15

Biopsy Tuesday. Right now everyone thinks it's a Lymphoma - very treatable. Guardedly optimistic.

April 22

Biopsy done Tuesday. Nothing in the lung (good). All signs pointing to a lymphoma. Expect to have final pathology results Friday.



April 11

I'd had a chronic cough since January. I was diagnosed with walking pneumonia back then. No chest X-ray. Nor on the follow up 2 weeks later. The cough never went away but I was recovering my strengh and back on the bicycle trying to get my form back for mountain bike racing. I could tell my form was off, but attributed it to being sick for almost the entire month of January. Cough got worse recently so I went back to the doctor to have it checked out. THIS time my Dr. ordered an X-Ray. The rest is history.


April 11

Just found out I have a tumor the size of a softball in my upper left chest. No Joke. Went to the Dr. because I thought my pneumonia was coming back. This time he ordered a chest X-Ray. That led to a CT scan that revealed the mass. Specifically 9.8 X 5.6 X 14.6 cm. First question to the Doc: "are those centimeters?" Don't know much more than that right now. I have a surgical consult Wednesday to plan a biopsy and we'll take it from there. At present it seems to be isolated to the one area.

Wednesday, June 3, 2009


I've been sharing my experiences among 3 different distribution lists. It's time to get it all in one place. I'll be gathering up my email updates and consolidating them here, along with some Hodgkins info and links I've found helpfull.