Health

Background Remission is here and chemo is over! See 5/24/98 and 7/14/98 entries at left. On Jan. 12, 1998, I was given a preliminary diagnosis of Hodgkin's Disease, a form of lymphatic cancer (lymphoma) that's eminently treatable and generally results in full, lifetime remission. A few days later, the diagnosis was confirmed, and over the course of a couple of weeks, I had pictures taken of my innards that revealed that the disease hadn't gotten very far: technically, I'm stage IIIB (NS subtype), but there's no disease in the bone marrow or in any tricky places. My prognosis is very good. My first chemo was Feb. 6, and I'm feeling pretty darned good. I walked 3 miles the day after, and have had few side effects. I get a cocktail of four drugs (ABVD regimen) plus a lot of antinausea medications that have been working great! I'll be updating this page regularly so those of you who care about my health can easily find out what's up. Letters and calls are welcome. I feel good!

History

7/03: Last check-up visit to my oncologist. I'm cured.

3/9/01: No health news, but I read the most wonderful book by a fellow survivor of Hodgkin's Disease. The title, Mom's Marijuana, gives you some indication of the quirky and funny tone of the book. Dan Shapiro describes his initial diagnosis and treatment and two relapses which end in nine disease free years at the time of the book's release. He works in a variety of medical roles at the University of Arizona where he helps people cope with crisis and works on how doctors communicate. The title refers to his decision in the late 80's to use marijuana to obviate the nausea and other side effects of his treatment. His mother, initially opposed, quickly changes her tune, plants some seeds in her suburban Connecticut garden, and helps her son. Actually, the title does a great service to Dan's mother, presenting her pragmatism as a solid virtue. Dan failed his mother only in not telling her to wrap the maryjoe in coffee when she unexpectedly brought it in luggage down to Florida for later treatment! A hoot. You'll laugh and cry. Buy it today.

5/9/00: In a simple, brief procedure (about 15 minutes) had my port-o-cath removed. I feel like this is the end of my whole cancer experience except for a scar or two. My thyroid count is a little funny, but my energy level is generally good. It's possible I'll have to go onto thyroid medication at some point.

4/18/00: It may not even be worthy of an update here, but I saw my oncologist yesterday and everything continues to look terrifically. All signs are of a complete lack of return of anything bad. My overall health is quite good, too. I'm going to get the port-o-cath removed hopefully in early May, as there's no particular reason to keep the thing in, anymore.

7/12/99: Rode the Seattle to Portland Bicycle Classic! Woo-hoo! My butt isn't sore and I'm not sunburned (except for a wee patch on the back of my left ankle which I must have missed putting sunscreen on), but I'm a bit stiff and a couple of fingertips are numb -- a little temporary nerve damage that'll heal. It was a blast. Read all about it.

6/4/99: Read about my plans to ride the STP and how to donate to the Lymphoma Research Foundation of America.

5/25/99: Have ridden a few hundred miles in the last few weeks, most recently 50 miles last Sunday around Lake Washington and back. The training is paying off, and I think the STP is really doable. I noticed my hair wasn't growing when I went to a haircut last week and there wasn't much to cut since the previous one (6 weeks earlier). My doctor thought it might be hypothyroidism, which can happen if the radiation conks out your thyroid. But my previous "thyroid panel" (battery of tests) in March were fine; he did another and they came back fine, too.

I went upstairs from his office to see a dermatologist about an ugly bump on the back of my knee that my doc wanted her to check out (turns out, just a nasty insect bite after the biopsy). She explained the hair loss and growth stoppage on trauma - she typically sees this for 3 to 5 months following trauma, like the radiation I had which ended just over five months ago. Her expectation is that the follicles will return to normal shortly. She also removed the bump: a shot of pain killer, a knife, and an electric cauterizer! Yow! Quick and efficient.

I'll see both my medical and radiation oncologist next month, and I have about 300 to 400 miles of training to do, too. July 10 to 11 is the big ride, which I hope to use as an excuse for fundraising for lymphoma research. (More on that soon.)

4/7/99: Had a checkup today with my medical oncologist, Dave White. Everything appears totally normal. He noted that a typical side effect from radiation therapy that shows up in X-rays (a kind of filament looking thing, it sounds like) is barely appearing, which is all to the good.

I had a physical in early March and came up aces, except for cholesterol levels, which are not excessively high.

Two weekends ago, I rode 40 miles with my pal and colleague Scotty Carreiro. This weekend, we plan to ride around Mercer Island (about 30 miles, but a lot of steep angles on the island's road).

3/1/99: Everything continues to go well. Last Thursday, I did a comfortable 40-minute workout on my NordicTrack; I finally discovered the tension belt was wearing out, and flipped it over. Whew! I was working too hard to make it go early on.

On Friday, I did a 25-mile bike ride around Lake Washington. It went well until the last few miles, which had a tiny uphill grade, and were a real slog. But I made it, and took the weekend off from exercise, because I don't want to push it.

My goal is to get fit enough to ride the Seattle To Portland bike ride (not race): 200 miles in one or two days. I'm thinking I will do it in two and not be a hero. I plan to use the occasion to raise funds for lymphoma research, but am still figuring out which group to fundraise for, and then will make up a brochure and start calling friends and colleagues for pledges.

1/12/99: Nearly a month later, I'm feeling terrific. I'm not sure whether my hair will ever grow back entirely in the Male Pattern Baldness Area, but that versus being healthy? Okay, a small price to pay.

I've started exercising at the new year, and my NordicTrack time has rapidly increased from a hard 5 or 6 minutes to 20 minutes without a problem yesterday. Woo-hoo!

I see my radiation oncologist in a few weeks just to touch base. The areas exposed are still a little different colored, and I had a real radiation burn bloom shortly after the previous note, but it went away very quickly, as did the remainder of the sore throat. I was around folks with flu and colds over the last month and have been entirely healthy.

I feel so good now that it's really difficult for me to remember how sick I was at times. It's also hard to face that I was probably having the effects of some preliminaries of Hodgkin's for years. I can't recall feeling quite this good for a long, long time.

12/15/98: I am finally finished with treatment. Hosannah, hosannah. I finished my 20 radiation treatments on 12/8. A week later, I have a pretty nasty sunburn on my neck and left armpit, but that's been the only real side effect. The radiation made me a little tired, and I had a bit of a sore throat at times. That's getting better, too. The R.N. I worked with at the Tumor Institute said I should expect both effects to be better or gone within a few more days.

I'm happy to be finished, and it's a nice rounding out of 1998. I was diagnosed a couple weeks into the year, and am finished a couple of weeks before the end. Lynn and I are off to Connecticut for two weeks, and when I come back, I have a full plate of work to start 1999 with. Woo-hoo! That's probably the end of this page for now, although I'll write more as warranted.

11/12/98: The latest epistle from the immature & immortal cell structure front (ok, let's say it: cancer). I am still terrific and cancer free, as far as modern techniques can determine. The CAT scans I had done for the radiation planning confirmed that my body is doing great. I started radiation on Monday, and am already 20% done - 4 of 20 total treatments; I'll finish on December 6.

The treatments are entirely straightforward, the staff is pleasant, and it's a real assembly line there - they get through a lot of people in any given day.

The scariest part of the process is when they're swapping the heavy lead "blocks" which shape the radiation field to the specific area to be exposed. These things must way 15 or more pounds, and they often slide them out directly over my face! No slippery hands, one hopes.

I have a tiny bit of fatigue, and maybe a small decrease in my ability to concentrate, but no effects so far otherwise. Hopefully, the next three weeks will go as well. My energy level is high, but I've stopped exercising after about 10 good days - I need to get back on the damn treadmill and lose my rubber tire.

10/22/98: The next step is almost at hand: a few weeks of radiation. I met with a radiation oncologist in early October, and feel pretty convinced about this step. Although the cancer is clearly almost entirely gone, it's that almost part that makes oncologists suggest a second "modality" (form of treatment) as the "two" part of a one-two knockout punch.

The radiation will probably start next week and last about four weeks. I should wind up with a total of under 4,000 rads, which is well below the threshold where serious problems arise for most people.

Strangely, earlier this week, I picked up the comics page and read Luann, where a character has been diagnosed with Hodgkin's Disease! I've exchanged some very nice email with the cartoonist.

I meet with the folks at Swedish Hospital Tumor Institute tomorrow at 9 am to do the simulation and planning, where, with the aid of three CT scans I had made earlier in the week (mmm, tasty barium soutions!) and other tools, they plan the actual course of attack using a radiation simulator. I get a few permanent tattoos. Nothing fancy. They're like registration marks in printing - seriously!

On the whole I feel great. My endurance is so enormous relative to what it was at the end of chemo, before chemo, and probably at any time in the last couple of years, that I wonder if my immune system hasn't been sub-par since maybe early 1996.

I go into radiation without any concerns, and although it might be a little difficult, I can't imagine it will be anything like chemo. Among other things, you don't feel it as it happens, and it doesn't last very long. I'll be talking to my naturopath before things get underway to make sure I get the right nutritional support during the treatment.

8/24/98: The MRIs I had last week came back totally clean. There is no evidence even of scarring in the organs (kidney, spleen), and where there is some residual scarring, typical of the kind of Hodgkin's I had, it's shrunk since the last MRI three months ago. However, my oncologist thinks it's prudent to get follow-up, preventative, low-dose radiation in the areas that have residual scarring. The scarring itself is not a problem or indicative of disease. However in his experience and in his reading of the medical literature, this is the most likely place for a future recurrence to come from. Zapping it would increase my risk by a tiny amount for other secondary problems, but effectively reduces my risk for recurrence enormously.

The radiation will be substantially below what you get for primary therapy, although I don't have all the details yet. Sometime in the next few weeks, I'll meet with my oncologist and then with a radiation oncologist to discuss the preventative work and schedule it in.

This part is easy compared to chemo, apparently, although my nascent hair might fall out again!

8/16/98: No news is certainly good news. I have little to report. I shaved my head for the final time today after four weeks of sparse growth. It's finally growing back, but the combination of thin chemo hair and new sprouts seemed odd to me. The best news is the eyebrows are returning, too. I get a series of MRIs next week to decide whether I will need follow-up radiation therapy to the chemo, but it seems unlikely. Something would have to show up on these MRIs that gave an indication of either some incipient or active Hodgkin's, neither of which were shown on the MRI from May 22, nearly three months ago (and two months before the end of chemo).

I continue to gain strength and feel well. My article about my disease showed up in mid-July in the San Diego paper; other sightings of my bald head would be appreciated.

I got quoted in the Wall Street Journal last week (8/12/98) saying positive things about my general practitioner's practice. He and his partner got front-page, top left billing!

7/14/98: Had my final chemo on 7/10, and won'tbe missing it at all. It went well, and here a few days later, I am feeling much better than I did on the previous round. Perhaps because I don't have to hold out anything extra - it's really over. My hair is growing back at a stupendous rate, even though I'm still definitely experiencing the chemo's effects. The most pronounced thing I've noticed in the last few weeks is that my consciousness is a bit suppressed. I feel like I am interacting with life through plastic wrap - kind of outside of events even as I participate in them. Hopefully, this will fade soon as I hit the magic couple weeks without chemo and can start recovering from its toll.

7/9/98: A sidebar that was supposed to run with my piece in the New York Times today didn't fit, so I reproduce here, below, in a table.

7/8/98: The last two weeks have found me pretty weary. Fortunately, only one more treatment to go. I've found the "chemo brain" phenomenon has hit hard. It's occasionally difficult to read or find the right word. The fatigue was pretty severe last week, but I didn't start to feel myself again until Tuesday. I'm still not quite all there, but given the final treatment in two days, I'm hoping a few weeks of downtime will find me back to something approaching the normality I had throughout most of the course of treatment. (My tolerance for typos has increased, which is always a bad sign.)

Based on the last chemo, I will take a couple lorazepams (a valium-like sedative/anti-nausea agent) before the chemo. It helped quite a lot.

6/27/98: I had had my penultimate chemo yesterday. Blood counts continue good with white count at 3,400. On the advice of my doctor and nurse, I sedated myself a bit before starting chemo and it make an enormous bit of a difference. I hardly knew that it was over! A big change over last time, when I was anxious. Only a single treatment left July 10th.

The chemo hall of fame, by the way, includes Toby Malina (3 times), once each from Jeff Carlson, Steve Manes, and Paul Stefanksi, and a whopping six visits (counting this final upcoming one) from the love of my love and heart of my heart Lynn D. Warner (Cornell '91; she loves it when I say that).

6/13/98: No real news. I had chemo No. 10 of 12 yesterday. It was a little more difficult than usual, probably due to some anxiety at getting it finishd. Next time, I will take some relaxant before the chemo to make the process easier. It's still not bad all, really, and here on Saturday morning, I'm feeling pretty normal. The scheduled finish date is July 10 - just four weeks away!

5/24/98: On Friday (5/22), I had an MRI at 7 am. An MRI is a magnetic resonance imaging scan (formerly called "nuclear" r.i.) that can reveal quite a bit of gross detail in your innards. My oncologist said the scan couldn't have looked better and said that I am in full remission. Yee-ha! The standard practice is to continue for four more treatments to eradicate any lingering, unmeasurable traces, and then that's probably the last I have to deal with the disease the rest of the my life. Less likely are recurrence within 3 months to 5 years (after which recurrence is very unlikely), or secondary diseases or cancers that can be caused by the chemotherapy. My response has been so good and fast and my health has continued to be so well during treatment, these possibilities seem even more remote than the statistics (which make them fairly remote). In celebration of remission I painted the side staircase. Wheeeee.

5/19/98: The latest chemo was on Friday, May 15, and it went splendidly. Lynn and I were able to get out into the yard and continue work on turning the lawn into a garden. The side effects this time around have been almost unnoticeable. The best chemo ever. Just four more treatments after this one. I get an MR (magnetic resonance) image taken on Friday, which should give an all-clear sign. Check back in this space for the results.

Personal Pages Li Spark’s "For the New Hodgkin’s Patient" pages – a detailed walkthrough the steps from diagnosis to treatment to remission Glen Martin’s "Hodgkin’s Pages" – a diary, price list, and resources Mike "Lach’s" post-clinical trial (and remission) diary Hodgkin’s Disease Mailing List (archives and instructions on subscribing) Links and Resources Mike Berela’s "Lymphoma Resource Pages": links on both Hodgkin’s and non-Hodgkin’s lymphoma accompanied by concise, well-written summaries The Mining Company’s Cancer section: an edited set of links to the best resources about cancer on the Net CancerWEB: a collection of thousands of links; based in the U.K. Institutions and Organizations CenterWatch Clinical Trial Listing Service: listings by disease and location of clinical trials The Leukemia & Lymphoma Society: the society promotes research and support for leukemia and lymphoma The Lymphoma Research Foundation of America National Cancer Institute (part of the National Institutes of Health) OncoLink, the University of Pennsylvania’s motherlode of research Neuropathy Association (peripheral neuropathy, a loss of sensation in the extremities, can result from chemotherapy)

5/10/98: Cold is over.

5/6/98: Caught some bug. Am on azithromycin for five days to eradicate. Feeling sickest I have since chemo started, but still controllable with drugs and rest.

5/2/98: Yesterday's chemo went extremely well, and new X-rays (6 weeks since the previous and 12 weeks since the start of chemo) show significant reduction in the areas where lymphoma was found. Very likely, I am days or slightly longer from full remission. An MRI in two weeks will tell that story. Today, the day after chemo, I usually feel pretty weird, but I feel almost entirely normal right now.

4/28/98: I haven't updated for a few weeks, as all is going well. I finished the 6th of 12 treatments almost two weeks ago, and side effects continue to be limited to some occasional stomach trouble and my bald pate! (Actually, shaved, not bald: some limited remaining hair has continued to grow and I continue to shave it off.) Last week was the Web Marketing '98 conference and that was taxing. I hope to take May through July a little easier than February through April.

4/3/98: Radiologist's reading of my 3/20/98 X-rays: "The mediastinal widening noted ... 2/6/98 is greatly diminished in the interval." This is somewhat more positive than the initial (positive) reading. The mediastinum widens when lymph nodes are swollen. providing one of the clues that lymphoma might be present. The reduction in the mediastinum means that the lymphatic system is returning to normal. Also, there are no longer any swollen or "ropey" lymph nodes that can be felt during a physical examination and my spleen is back to normal size.

On the down side, I seem to have gotten a small cold, which made the 5th chemo somewhat more difficult than the previous ones. Not bad, just not as easy.

3/21/98: Yesterday, during treatment 4 (of 12), I got some good news. Based on X-rays taken that day the cancer is clearly subsiding. My oncologist feels we're close to where he expected as this point after 2 cycles (2 treatments per cycle = 4 treatments). I continue to feel good in general, with a few off days. Insomnia last night gave me two hours sleep, despite a sleeping pill. I'll probably crash later today - my birthday of all days!

The new port-a-cath I had put in two weeks ago made drug administration a snap. Of course, getting blood out of it was a bit of a problem. The catheter part of the device runs a tail through a vein into which it's sutured. The tail can get compressed against the side of the vein, making a sucking action difficult, though it doesn't interfere with administration at all. And, in any case, it didn't require them finding a vein - just putting a special needle point through a thin layer of skin into the port.

Of course, the port-a-cath comes with a price. The bills so far for 3 1/2 hour stint in the hospital, including surgeon, anesthesiologist, nurse, resident, and other OR technicians, use of OR, the device itself, blood draw, X-ray (to check placement), recovery room, and so forth: $4,200.00. (Note: as of 5/6, my total liability has been $1,700, however, after the insurance company negotiated the price down and paid its portion.) And that's not all the bills. However, for a medically necessary procedure of this kind, my insurance will pick up most of the tab. And it's definitely going to vastly improve my ability to tolerate the drugs (and not destroy my veins or tissue) as we get into the end game in a few months.

So bright news on the progress front conveniently in time for me to turn 30.

3/11/98: I had a Vortex(tm) brand port-a-cath(tm?) put in last Friday. It's a device that makes it substantially easy to dump the chemo drugs into a big vein by providing an easy place on the chest to attach intravenous feeds. The chest mount (the port) has a catheter attached (the o-cath) that goes into a large vein. This reduces the risk of long-term vein problems and makes the chemo better all around.

I had to get up at 5.30 am to get to the hospital by 6.30, and the surgery was at 7.30. There were, by my hazy count, six people in the operating room, most of whom I'd had a chance to chat with pre-surgery. It was done under a local with some sedation, but I fell asleep as they were starting and woke up just when the stitches were being finished up.

I had the chemo around 10 am, following the surgery, and my white counts are up considerably (to 2.6 from 2.0). This is due to yet another drug I'm getting that helps promote white blood cell growth. I've just gotten another three injections over three days ending today. A good lower bound is about 3.0, and although I haven't gotten sick since starting chemo, my oncologist likes to keep the levels up as it makes it easier for me to stay on the regimen, which apparently can boost the odds of remission by a tiny but statistically significant amount. I have no objection to that!

Monday was my first really bad day, and I managed to work a few hours that day anyway. The nausea was bad between the chemo (which usually hits hardest the Tuesday after administration), recovery from the surgery, and the white count mediation. Oh, and the painkillers, which can cause an upset stomach. Fortunately, Zofran (from my dear dear friends at Glaxo-Wellcome) is a miracle drug in keeping me nausea-free. It's pretty incredible stuff.

Tuesday, I was pretty much back to normal and feeling my usual carefree self. I will probably be entirely hairfree as well soon, but I'm already most of the way there with the shortest haircut in my entire life.

2/20/98: second chemo was even easier than the first. In two weeks, I get an intravenous catheter (a port-a-cath) that will make it faster and simpler to draw blood and administer drugs - and reduce the risk of various vascular problems. This will become especially important in the weeks to come when I'm feeling a bit lower, and won't be as happy about getting stuck. My white blood count was down to 2.0 before the 2nd chemo, so I am taking three administrations of a white cell booster to avoid bottoming out. (Normal is 4 or higher, but below 3 is a matter for concern.)

My oncologist has pointed out that Stanford consistently ekes out a few percentage points better results in lymphoma treatment which is partially attributed to staying on the chemo schedule. Rather than have me delay my two-week cycle by a week to get my white count higher, keeping me on a regular schedule and using other means to boost the count improves my already excellent chances, apparently.