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.

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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).