More Maui

Maui continues to love us and vice-versa. Went ziplining yesterday, will try to put a few pix of that here or somewhere. Trying to remote blog pix and vid from cell phone, but still not working as advertised. Family could try the Sam & Am. anda site, the pictures section. Doing some laundry after breakfast at friend Susan's, then going to Little Makena beach nearby, then...?

Anyway, thanks for all the love & messages! I think just being here started to shrink the tumor more, but started a 2nd course of steroids anyway. Apart from an increased tendency towards hiccups in the evening, no adverse side effects. (Sam & Amanda's tip was see if doc will let me taper up, taper down, if necessary.)

Still in the plans: hiking in the Haleakala crater, maybe biking down, road to Hana & waterfall with pool!!

love to all,
D&K

Hi from Maui

We made it! Arrived after 25 hours, but up at 7:30 for breakfast with friend Susan in Kihei, out on the beach by 10, and preparing for some of our activiites later. Susan's new place (and our hotel) look out towards Molokini, Susan's with incredible views out her lanai, breezes through the windchimes as blue and partly-cloudy whirl across the sky. Temps in the high-70s to low 80s, water perfect, breeze constant, soft, and humid.

What an incredibly healing, relaxing place. Every jangling nerve in my body knows it is in a different state. Floating in the waves, body surfing, hearing the infant whales call their moms when our heads go underwater. (Well, they call anyway, our heads just happen to be there.) Susan is delightful and her home radiates peace and life essence.Got a mellow that back-home realities cannot harsh.

Aloha!

Dr. D. says we're good to go!

So, Dr. Dubois says he's very happy with my response to the 4-day Dexamethasone (steroids), and we're good to go to Maui! The response is a temporary effect, and so I have refills in case I have to play "whack a mole" with the node for another 4 day pulse. Sam and Amanda gave me a tip for mood management in case I go the other way. I also have a scrip for antibiotics, instructions to call if anything arises (in the way of problems, that is). With the good cheer of friends and family ringing in our ears, we appear to be stumbling our way to Maui.

Of course, anything like this is beset with second thoughts, and (absent steroids and at 11PM) I am champion of 2nd, 3rd, and 4th thoughts. E.g. There's a snowstorm coming in just before we leave! Is Katy feeling well enough? Is that a weird twinge in my back? Will we be too far from our dear friends and family? Should I be second guessing two of the best lymphoma specialists in the area? Hmm. Probably not, on that. Geez, I really can't stand myself without a backbone, it's like having Woody Allen live in my head ...let's see, where are those steroids?? This is probably what comes of having [too much information alert!] chronically low testosterone, and why the steroids feel like the world's finest antidepressants on crack, with a side of Margaritas to me. I think I'm going to have to take up base jumping or something to keep the adrenals functional after all this. (Great thing about base jumping is its binary outcome: yer either psyched to the max, or dead.)

OK, well, I think I've talked myself down from the panic attack, will take EVERYONE's extremely fine advice and TRY TO RELAX!!

Still progressing

Well, I repeat, I LOVE STEROIDS! Oh, yes I do. (Oh, yes and all of you, my wonderful friends and family, too, of course.) Progress continues on the reference big node and mentally I feel like a million bucks. Of course, when the steroids wear off.. it's probably "hide the chain saw, Henrietta." But with luck by then we hope to be cleared for Maui.

Katy continues to ply her super Excel skills to update the graph in the last posting. (OK, you stats geeks, we know you're not supposed to do the best-fit line on averaged data. Live with it. Excel doesn't know any better.) Don't worry about the little uptick today on the small-dimension line, it's not statistically significant. The large-dimension line has a much better R-squared anyway, so it's a much better predicter.

Chemo is scheduled to begin March 5.

Progress updated

Updating this post to Monday: At 81 hours into the Dexamethasone pulse (corticosteroids), the large tumor is continuing to shrink. Yay! Now below Dec. 21 measurements. Enough? We have no idea, but Dr. A.F. says "GOOD NEWS". Both docs have kindly answered our question in re: why not surgery/radiation.

The graph below shows our caliper measurements over time. Click on the image to enlarge it.

Coming Soon: New, shrunken tumor photographs! Oh, boy.

Steroids are great. I am mentally totally jazzed. People say I'm just like a very alert version of my better self.

Have learned that there are definitely two opposite ways to look at this: from the death side, where I have had lots of time these past few years with my Dad, sister, and Mom -- and the life side. I see the life side when friends take us in and share their lively lives that have little to do with disease and death, and feed us and tell us stories. And most especially Tonight, after riding home from seeing much-loved father in law, in rain, good programs on NPR, then on arriving home impulsively crashing into the sweet sexy arms of my wife like a mere 30-year old, remembering health and optimism, I remember what it is to be alive, to think of future and new life. More joy than in years.

Sunny daze?

We made a decision today, Thursday (albeit a revokable decision) after both doctors weighed in. Both agreed that a "pulse" of a steroid, specifically dexamethasone, should -- for now -- yield results equal to the R-CHOP. The effect should last long enough for us to take our vacation, if we want to, without concern for all the side effects of R-CHOP (especially photosensitivity!). I would then begin R-CHOP upon return.

Being cautious in the extreme after my family experience, we insisted that if we were to take this path, both doctors should agree it creates NO additional risk over starting R-CHOP now, and allow no room for regrets later. We got an affirmative response on that.

Perhaps most reassuring is that Dr. Dubois can check my progress on the dexamethasone next week. My gigunda-node will provide a useful guide to that, as it is so very accessible. If we are not all perfectly satisfied, we can still cancel vacation plans and take the R-CHOP train.

Radiation of the big node was ruled out, as that is only for indolent lymphoma, which I technically no longer have.

So... the good news is that we may be able to get to Maui -- and enjoy it -- after all. The bad news, of course, is that I now have a more aggressive lymphoma. We did not discuss prognosis, although clearly I am still on the good side of the curve for my diagnosis.

It's really hard to know how to respond to all this. Should I be fearful? Angry? Disturbed? Moderately annoyed? Relatively indifferent? Pleased? How does emotional response matter? Does choosing a response make any sense? I mean, a response should just be there, I shouldn't have the option of choosing one, right? That's like choosing to like, for instance, boiled okra. And yet it seems to be a choice. How odd.

I guess I'll go take more pictures and measurements. I'm a geek.

Disappointing news

Today pretty sucky from nearly any aspect. Weather is complete glop -- inches of it.

And then, Dr. Dubois did have some disappointing news for us. The large node biopsy shows evidence the disease is on the edge of transforming into a more aggressive, large-B cell lymphoma - at least within that node. They found some large B cells there. This disqualifies me from the vaccine trial. It also means going to a more aggressive chemo -- the one most people get, called R-CHOP. The weird good side of this is that chemo is more effective on more rapidly-dividing lymphoma cells, so this may knock me back to the earlier state. Among other consequences, much needed SAD therapy, vacation in sun, may be at risk. Along with what remains of my hair.

However, all the other nodes are progressing at the indolent rate. One even shrank. And there is no evidence of cancer in the bone marrow. Moreover, I have NONE of the so-called "B symptoms" associated with more aggressive disease such as tiredness, chills, night sweats, etc. So for a guy in my shape, I'm in pretty good shape. Mentally, we're just a tetch punchy. Did I say "a tetch"? Perhaps a tad more than that.

----------

New, in the "too much information" category (no kidding) -- So many cancers are invisible and so carry an air of unreality. What brings it home for me is seeing with my own eyes the sheer physical presence and growth of the big honker. Being a geek, I've taken a series of photographs of it from Nov. 15 through Jan. 6, which, if your curiosity exceeds your prudence, you can find here. It may take a while to download, esp. if you have dial-up. If after reading the opening caveat you change your mind, just click the "Back" button on your browser (Left-arrow <= at top left of window).

A Brief Period of Nerve Wracking

This morning we got a call from Dr. Dubois' office, to meet with him 8AM Wednesday to review biopsy results & plan course of treatment. This was seriously nerve-wracking, because we figured everything would be as expected and the next step would be R-CVP treatment. So we faced 24 hours of nail-biting. Is this just a normal step in planning? Did the biopsy show a transformation to a new lymphoma?

Katy (who is home sick still) had the brilliant idea of actually (gasp) asking the person who called what this visit represented. Turns out it's just S.O.P. for beginning treatment. There is nothing unexpected in the biopsy results that prompted this visit. WHEW!!

Course of treatment, duration

No news yet today on when I'll begin the R-CVP. We've been kind of hoping for mid-week because the timing will work out around our vacation(s). We're also waiting to hear if they can make the vaccine and to be sure the disease hasn't transformed. But I can begin treatment without knowing those.

The course of treatment is this: 6-8 chemo sessions, 3 weeks apart. (About 6 months). Then I get 6 months off for the immune system to recuperate. So about a year from now we begin the idiopathic vaccine, once a month for 2 years, including some self-injections, more CT scans, and more bone-marrow biopsies.

That's assuming that the sponsoring company continues the study, that my disease does not transform, that they can actually make the vaccine from my biopsy (5%-10% chance they can't), and that something better doesn't come along. And odds are (60/40) that the vaccine won't work. Also, the company failed an earlier clinical trial goal and unless they get acquired, their cash burn rate will put them out of business this spring.

What's hard is to stay optimistic (which is rational given the overall success and rate of new developments in this field) and which is good for the immune system in general. My experience with siblings Tom and Pam has led me to expect the worst. So at my best I'm optimistic while constantly expecting to hear "oops, something has changed." Or, "sorry, it's not responding to conventional treatment".

Whatever weekend

Katy has yet another cold, getting them about 1 per week, poor kid. Coughing and sneezing continuously, violently. Snowy and dark the whole fucking weekend. Tennis ball node looks like a giant bruise, stitches irritating. Got absolutely nothing accomplished yet another weekend. Xmas tree still up. Soup for lunch, soup for dinner. Sky cleared this afternoon, but brain was full of screaming contradictions so took a 3 hour nap. Fuck it.

B Cells and Winnebagos

Next step, starting R-CVP next week. This is the "standard of care" therapy, with R-CVP standing for Rituximab, Cyclophosphamide, Vincristine and Prednisone. Rituxamab (or Rituxan, the trade name) is a "molecular antibody", one type of new wonder drug,and CVP is a chemotherapy cocktail.

Rituxan works by latching onto a specific protein molecule that sticks out of the B cell like a TV antenna from a Winnebago. The other parts of the immune system (T-cells, macrophages) see this Rituxan like a UFO, now attached to a Winnebago. Since their job is to chomp the UFOs in the body, they chomp the whole thing. See, the cancerous B cell (a Winnebago with an antenna) looks just like a good B cell in most respects (also a Winnebago with an antenna), so the immune system leaves it alone unless it has this UFO attached to it.

Now, unfortunately, ALL Winnebagos (cancerous and normal B cells) have TV antennas (this protein), and the UFOs (Rituxan molecules) only look for the TV antenna. So all Winnebagos come under attack. Fortunately, the Winnebago factory can make them faster than these self-reproducing Winnebagos (cancerous B cells) can reproduce. As a result, you end up with lots more good Winnebagos than bad ones.

Bye, opsy

Bone marrow biopsy was piece of cake. I've had more uncomfortable dental procedures. Yay, drugs. Also Yay, Dr. Dubois, 'cause he stopped whenever it started to hurt and pumped in more local anaesthesia. This takes more time than many technicians take, which is apparently one reason why there is such variation in reports on how much it hurts.

Tnx, Mary for the lift. Katy came to pick me up at 1. She just caught her third cold of the season (arghhh) and wanted to come home anyway.

Percocet, game & match

Dr. D. finally called this evening after a little prompting of his staff by me. The deal is I get the bone marrow biopsy tomorrow noon-ish in his office. I get one or two Percocets, an Alprazolam, and "an oil truck load of lidocaine" where I need it. He says the pain depends more on the skill and speed of the technician than anything, and he's done thousands. He'll also stop if it hurts too much. Gonna need a ride.

A slice of life

A bit more conversation today about the bone-marrow biopsy. At present I'm scheduled for Friday 12:30 with Dr. D. He's supposed to call and figure out the morphine question with me.

I've had one hell of a stiff neck for the past few days, probably originally from sleeping weirdly on it or perhaps doing something wrong at the gym. Of course, my imagination has begun to ascribe this to previously-undetected lymphoma, and suggest that perhaps it has invaded my spine or transformed (as lymphomas can do) into something painful. I need to find other things for my imagination to work on.

Probably in the "too much information" category -- but at this point I don't really care -- At right, top is one slice of many hundreds taken during each CT scan. The roundish object just left of top, center is the big, honking lymph node. The slice is below hip joint level, and the white doughnuts (yum) with handles are cross-sections of my thigh bones.

Addendum 2/13/08: Also in the "too much information" category -- So many cancers are invisible and so carry an air of unreality. What brings it home for me is seeing with my own eyes the sheer physical presence and growth of the big honker. Being a geek, I've taken a series of photographs of it from Nov. 15 through Jan. 6, which you can find here.

The short story up to Feb 5

So, here's the short story:

In January 2006 I was diagnosed (DX'd) with indolent follicular non-Hodgkin Lymphoma, or fNHL.

• Indolent means it moves slowly, and indeed, for two years it barely moved at all.
• Follicular means that under a microscope it looks kind of like hair follicles
• Non-Hodgkin (note, not Hodgkin's) is one of two major classifications of lymphoma. There are 60+ types.
• Lymphoma is a blood cancer like leukemia or multiple myeloma. It specifically affects the white or "lymph" blood cells that combat infection. More specifically, it is a cancer of the B cells, one of three major elements of the immune system.

Lymphoma is when one individual B cell gets cancerous and starts reproducing (cloning) itself. All the cancerous B cells are therefore "identical twins". It becomes harmful as the lymph nodes increase in size and crowd out or otherwise impair body functions. (Lymph nodes are places where B cells go to mature and hang out -- sort of like college. They are born in the bone marrow.) So... it's a systemic (not local) disease almost immediately, since lymph goes everywhere blood does.

This fall, one particular lymph node started growing like topsy to where it is now about the volume of a tennis ball. Additionally, since I am CT-scanned every 4-6 months, the doctors could tell that other lymph nodes were also growing and my spleen (where B cells go to get recycled) was enlarged.

Dr. Dubois (dew-bwah), my hematologist-oncologist, decided in January that I must begin treatment. If you saw this one node/tumor you would agree. We were about to begin doing the standard biopsy of this big tumor preparatory to beginning standard treatment. However, at my prompting, it turns out that his principal colleague at Dana-Farber has been participating in clinical trials of a gee-whiz new kind of drug called an idiotype cancer vaccine. We had to decide in a hurry if we wanted to get on board, because we really want to start whacking this thing. We decided that we did, in part because the first year of treatment is identical to the "standard of care" treatment I was about to begin anyway! But, it means that Dana Farber has to do somewhat more extensive intitial preparation than Emerson (the local hospital in Concord) would do.

So, today I got a nice chunk taken out of mr. tennis ball, and got CT-scanned once again. The biopsy tissue goes to California, where they attempt to make a vaccine specifically for me from it. There is about a 5%-10% chance they can't.

I also need a bone-marrow biopsy before treatment can begin, and therein lies todays' frustration: I heard that these hurt like hell, and so get general anesthesia, not just local. So I asked Dana Farber, they said they use morphine and atavan (good stuff) but wouldn't knock me out. They only do that for pediatric cases. So I said, OK, fine. They also said, let's wait until we know the vaccine can be made, should be 5-7 business days. Sounded good to me.

Today, I find out that no, it could be weeks before we learn about the vaccine, so if I want treatment to begin, I need to get the bone marrow biopsy done regardless. Dana-Farber tells me I can get it done locally (at Emerson). Turns out they didn't "get" that I'm okay with morphine/atavan and decided I don't need to be knocked out, and were referring me to Emerson because they just don't do that. So I correct them on that and schedule one at Emerson, only to find out that Emerson does NOT use morphine and atavan, just a local. Ouch. Unless it's done in the hospital, not the office. Which will be a longer delay, I'm sure. So I'm caught between wanting to get started and wanting to avoid a pain that has been described as "someone hitting your hip bone with a chisel and a mallet." Am I being a sissy? I don't think so, but I am causing problems. But I wouldn't be causing them if people had given me all the information at once!