Are We There Yet?

Great news! Jim has hit 150 pounds! (the sound you hear is him correcting me with typically scientific precision-- "that's 149.1 pounds, actually") So I upped it by an extra Twinkie. Sue me! Since he has been off chemotherapy, he has been happily downing normal meals and snacks. Boy, nothing like a wife who can pack the weight on ya', right? That trait is the single most coveted quality in third world countries like Ethiopia, although scandalously overlooked here.

The other good news is that the doctors are again planning for the SCT. (!) Originally Jim was told he would be dropped from the clinical trial he had been enrolled in, given that more than a year has passed since he was diagnosed and signed on to the trial. Today, they told him a special exception had been granted, provided he gets this transplant soon. They are looking at November as the preparation period when he will be gearing his body up and making the stem cell collection. Collecting the stem cells will take anywhere from one to five days, depending on how many there are in his blood. (in the millions!!) Once that is done, he will be admitted to the hospital a week later, possibly the day after Thanksgiving, maybe sooner. They will administer powerful drugs which will kill all his red cells and immunities dating back to when he was kicking his crocheted booties off. His immune system will be laid bare, so there will be a time of being a "bubble boy." Once his blood counts reach a particular level, he can be released into our pristine home.

Now, a few of you are lucky enough to know my home rather well. Matt came by the other night and gave me several hundred pointers on how I might improve conditions. Something about... "Mom, NEVER buy fruit again that is not in a can!" Seems the autumnal bowl of apples so highly recommended by Martha Stewart which was buried under a ream of forms and mail on our table had become a magnet for some wildlife I hadn't anticipated. Now, these things, judging from their size, should have brains the size of, ummm, salt granules. However, they are clever enough to avoid common methods of extermination (meaning my trying to clap them dead). I opened the microwave the other day and one flew out. Red eyes and all. To my chagrin, I have discovered they have a propensity to fall headlong into a glass of red wine. This observation was made when the little b****s dive-bombed into a glass of merlot I was enjoying. In fact, two of them were frolicking playing "Marco"-- "Polo", when I noticed them. Ignoring comments of "well, they are just protein," I was forced to toss the entire glassful down the drain. Perfect example of "no wine before its time!"

In sincerity, the project of getting the house in immaculate condition intimidates me beyond belief. Are they really sending someone home with ME, who needs me to never make a mistake? Me, the high priestess of mistakes?? The penalty for a mistake might cause an infection that could kill him.

I haven't felt quite this way ever before... not even when they placed my first born in my arms and wished me luck. I knew she would survive. Babies do. But this is the most responsibility anyone has ever handed me. Suddenly I'm back feeling like a small girl, lost in Filene's Basement.(RIP) My mom and grandmother would take me there and lose me four or five times in the crowd. It was the Irish version of "coming of age". At six, you have no sense of direction, no money, and you don't know anyone; it's a wonder I wasn't permanently traumatized. (Maybe THAT's when it happened!) Unintended consequence, I grew up recognizing a Chanel suit at 50 feet.

So the moral of this blog about plans, and the likelihood of needing to change them, is that life has this way of expecting far more of you than you think you can deliver. Most of the time, delivering is under your control, but not easy. So never leave apples on your table.... they attract fruit flies.

Oh, and don't let them tell you different; it's Fuh-Leens, not FI-leens.

Gulag on the second floor

Hello, you faithful readers. My blog calendar tells me three weeks have vanished since we last met and I was retreating to the cellar and my stash of chocolate. Well, reluctantly I am back in circulation. The last 21 days have been mercifully quiet and devoid of health issues to report. Jim and I ventured into Boston this morning for his appointment with the oncologist. His red cell count is low, yet again, so he is getting topped off with two more pints of blood, even as I write this.

The current 'fantasy' is to go forward with collecting the stem cells for transplantation. It is scheduled for about a month from now, subject to bringing up his blood count. Revlamid has done wonders tackling the myeloma, but is also suspect #1 in the mystery of what's suppressing his body's ability to make new red blood cells. They have decided to suspend Revlamid for the next month or so, to give his body time to produce more red cells. His weight is okay, although a touch down from last time. We are getting all the dairy and fat-rich things into him that we can, but he is certainly not eating with any gusto.

A few things have gone away for Jim in the past year. He lost his taste for coffee, for one thing. He has also forsaken the barber and the beard trimmer in favor of more of an Al Solzhenitsyn vibe. Originally he expected to lose his hair and beard either from the chemo or certainly with the SCT. But as that has gotten kicked ahead so frequently, the hair is reaching Rapunzellian proportions. Just the other day, I caught him hanging his head out the window. Not only that, he looks like a regular Evel Knevel on his recumbent bike.

For someone who watched a fair amount of TV in his day, he has not watched any in many months. No music either. Nor does he answer the phone. And I come back to how funda-mentally different he and I are. I have never been too sick to answer the PHONE! R U Kidding? Of course, obviously I have never been as sick as he. I miss hearing the car coming in the driveway before dinner. (I could always hear it as I was frantically trying to defrost something and cover it with tomato sauce before he walked through the door. Don't knock cinnamon toaster strudel with tomato sauce til you've tried it.) And we used to have so much to talk about... he, the inveterate watcher of those McLaughlin people who are always talking over each other, and me always talking over him. Things will undoubtedly change yet again, once he recovers from the SCT whenever that happens. We are both altered by this experience and it will be interesting to see who we are if life should return to "normal."

SHE WHO RANTS!!

Well, we should have continued to stay away from the hospital on Wednesday, but noooo, we went in, flushed with glory and hopes to start the process of the Stem Cell Transplant. But God has other plans for us, apparently, because Jim's weight gain which was the source of so much optimism, disappeared in 2 weeks, along with an additional five pounds, bringing him down to 130 pounds. DRAT! He is experiencing some dizziness, which makes his walking unsteady, thus thwarting any attempt at walking for exercise. Oh, also the red cell blood count is down, so he needs another couple of blood transfusions to go with the ones last month, and the ones the week before that. Um.....REALLY???!!

Oh, and the SCT? Isn't happening until he gains back the weight or the burden of recovery could kill him!!! I knew we shouldn't get our hopes up!!

We keep trying to get food into him, but after 2 bites, he feels sickeningly over-full. Shouldn't have sweets; although they are rich in calories, they are bad for diabetics. How about a PBnJ sandwich, or a bowl of spaghetti? Nope, they contain gluten. It's like an evil puzzle, trying to figure this all out, made grave by the knowledge that if the weight loss continues, irrespective of the cancer, Jim could be in dire trouble.

He remains very calm... drugs will do that for you. Of course he doesn't have much choice given his energy levels. I must say that there has been more kindness and common sense in BI Boston than anywhere I have been in the last 10 years. Consistently, people just seem to take care of one another, patients, staff, medical personnel, other care-givers. Virtually no one has been less than exceptional.

The icing on the cake came this evening, Nut-job, our resident squirrel has apparently spoken so warmly of our hospitality last winter that even this early in the fall, there is the sound of many, many paws in the second floor walls. Sounds like Park Street Underground. Creeps me out entirely. Used to be just in the ceilings, but this winter is shaping up to be the landlocked version of Noah's Ark.

I AM GOING TO

LOSE

MY

MIND !!!!!!!!!!

Psst. If I'm not back by Monday, toss some Dove Dark Chocolate bars down the cellar stairs. I will be the one in a fetal position, mould overtaking me, hugging my dusty, empty ceramic Aunt Jemima cookie jar someone gave me back in 1979.

P.S. Don't tell.

Marriage is an Institution, and so is an insane asylum.

We liked last week's results so much we didn't go back this week, so the next visit is Wednesday. Eating hasn't been such a cake-walk for the past week, and staying awake is more of a challenge. The "getting the Revlamid two step" has begun, with a promise of delivery on Tuesday. We'll see.

Yesterday was our 39th wedding anniversary. Yes, fourteen years of wedded bliss. If anyone had said a 24 year old right-brained travel agent/music teacher could find happiness with a 28 year old left brained nuclear engineer whose IQ was greater than his weight (okay, he was in good shape) I would have believed them. That's how naive I was. We have been through thin and thick together (even our profiles). We moved to Maryland six months after we wed, where he had a job and I had extended family. I commuted to AAA Headquarters, just a block beyond the White House. Our first apartment there was nice, with a big balcony and a pastoral view. Through some ingenious jury-rigging, Jim was able to bring in hockey games on WBZ. We'd drink chablis, watch the evening lightening storms, sitting on cushions out of the balcony, while the cooling rain pelted down. Life was good.

Then we bought a town house. Three thousand down. Cathedral ceilings, brand new, with a room destined to be a nursery. Lynn joined our lives while we were there, and Jim worked for Bechtel and NUS. But homesickness stirred in us both, so he scored a job at Boston Edison, and back to MA we came, Baby on Board. This was 1974. We passed papers on a cute little cape on the day Nixon resigned the presidency. The rest of the 70's flew, and with Three Mile Island, came the end of the "charmed" part of our life.

Work issues and a general decline in nuclear power plant starts left Jim in an untenable position. On the plus side, Laura put in her appearance, and we knew we needed a larger house. Oh My. So we held our breath and bought our current house, a place we have adored and loathed alternately. It has charm, it has character, it has history, it has no insulation, unless you count 130 year old horse hair. There IS no such thing as a small repair. To this day, we lose communication with feet, fingers and the tips of ears every year between November and March, the ultimate unexpected consequence of home-grown cryogenics. We have lugged a forest worth of tree parts into a Vermont Castings stove (7 cords in one winter) then tried heating by a supplemental gas heater in the kitchen that left a permanent basket-weave tattoo on Matthew's forearm where he fell on it. Last year, we had two electric faux fireplaces going. With Jim feeling cold on the hottest summer days, I really can't imagine how we will keep him even tolerably comfortable, which is one reason for selling this place.

The 1980's were tough. Although we gained Matt in '84, we lost my dad to lymphoma in '86. Jim was gone weekdays, every week, commuting to Long Island, to Syracuse, to Groton CT. I hauled wood, hauled the kid, hauled catering. Jim's eccentric dad (who will be the subject of my first book) came to live here while Jim was away. Wunnerful! Jim brought computers into our life, self-teaching every night. His brother became a quadriplegic, my sister developed Lupus, we had a fire, I ground up two kitties under the hood of our car... I had an ectopic pregnancy... lost the diamond out of my engagement ring, then just over a year later, Matt joined our lives. I started my catering business. The 80's were very BUSY and sometimes in a good way.

The 1990's really were all about Jim settling in as State Nuclear Engineer at Mass Emergency Management Agency, part of the Commonwealth. Insurance, income, some security, then getting RSH off the ground, which has been the great passion of his life. We traveled pretty often, attending conferences, presenting papers, holding workshops. We saw Paris and Nice together, and Japan, New Orleans and the radon mines of Montana. And Washington.... lots of Washington. Matt and Laura joined us to see San Francisco, the wine country, the gorgeous scenery along the coast to the south, and on a trip to Orlando.

So here we are today, about to begin our 40th year, with no more certainty about our future than we had on this day so long ago. Jim weighs about what I did as a bride (but doesn't look half as nice in my wedding gown). We foster the small flickering light of optimism as best we can. I've learned life is full of opportunities to take a huge risk. One of the biggest is the decision to commit to one another for life, as we did. Too bad young kids can't fully appreciate the awesomeness of "as long as you both shall live".

Then again, I'm still finding out!!

Overtime!!

Wonderful news. Jim's test results came back, and the Revlamid has kicked the cancer down to where he falls within the "normal" range making him a candidate once again for a stem cell transplant. They hope to fast-track this, since there are only several weeks left in the clinical trial, so things could proceed quickly. He has also gained another five pounds in an inspired collaboration between Jim and the Burger King, which is quite the mental image if you know Jim. Ronald McDonald, eat your heart out. Not exactly a ringing endorsement of my catering business, though!

So I guess now we all need to climb aboard the believers train. The transplant could be as little as several weeks away, or if that timing can't be accommodated, further into the fall, but apparently the stars are coming into alignment. We met with Jim's oncologist this morning before the test results were know, and he was encouraging. Jim's reaction was a little like someone finding out the Pope was coming to the US: detached, calm, glad, but not what you would call giddy. Sometimes he can be inscrutable to me, a mere woman. We will be married 39 years on September 12, and I still don't understand parts of him at all.

Even now, when we are in overtime innings.

The First Anniversary is Paper, right? BTW, this is NOT Jim! or me.

We are finally at the one year anniversary of Jim's diagnosis. When I was young I thought it would be so cool to know what the future held... of course now I realize it is best this way. For whatever improvement in planning that prescience would provide, there would possibly be things that would shake your confidence in survival.

But survive we did, and Jim is showing some improvement. A week ago, he was still steadily losing weight. He drank Ensure because it was possible to track exactly what calories he was ingesting, (ever the scientist) but there were days he didn't get enough and his weight kept dropping. This week, he tried crackers and peanut butter, and a concoction of white sauce and hamburger on eggs, he dreamed up himself, (a little like Biscuits and gravy) plus a few judicious burgers from BK. Yesterday he weighed five pounds more! *note to self... skip the Whoppers.

The first time we saw the oncologist we learned the term "M-spike" (a kind of barometer of how much excess protein there is in a patient's blood.) Ideally, healthy people have zero excess protein. When Jim was first tested in August 2008, his M-spike was 5400. Seventy-five percent of his bones were affected by MM. The initial chemo did a lot of good by reducing it to 2500 but then it leveled off. Now he is beginning the fourth round of Revlamid, and his M-spike yesterday registered an amazing 880, which is cause for great joy. They even alluded to getting him in line for a Stem Cell Transplant, but on the "Fool me once, shame on you, Fool me twice, shame on Me" premise, I wince at the possibility. So disappointed already, twice. Lets just keep beating back the myeloma, and see how things go. He needed another two pints of blood yesterday, to help his red cells which were reduced by the Revlamid. One side-effect of Rev. is the possible formation of blood clots and embolisms; the same is true with the medication he is taking for his appetite. A cost/benefit analysis can best be done by flipping a coin. With the grace of God, he will avoid those side-effects.

Meanwhile the company that ships the Revlamid continues to pursue the lopsided game of matching wits with me. This time it was over a week with daily calls, before they deigned to ship the drug. This, because of restrictions and regulations imposed by an agency of the Federal government. If one regulation is good, six is better.

Can't wait until the Feds are in charge of all my medical stuff. That should straighten things RIGHT out.

The other big news is that our house is officially on the market. It was an emotionally charged decision, but in the bottom line, we need to do this now. We'd like to stay in town, but we'll have to see how enthusiastic a reaction we get. In this round, we are planning only to market to contractors, since the house is built on two lots. That will keep an endless parade of tire-kickers from traipsing through the house. If someone wants to preserve the house (please, please God) they could just lop off the kitchen and build a new one on the Webster Street side while retaining a lot for new construction. Still a pretty sensitive topic, coming on the heels of everything else, but we will prevail!!

Not for nothing, Muckerheide means "stick together strongly" in Hindi.

No it doesn't. I made that up.

I can't tell you what it means. I know, but I can't tell you.

Home of the WHAT?

Last week Jim was neglected a bit while we transformed the cellar, but seems no worse for wear. I rolled him an Ensure each time I passed our room, and he read a lot, napping and seemingly insulated from the chaos outside the door. He continues to take the chemo in pill form here at home and sees the doctor once during each protocol.

We had helpers and boxes everywhere, punctuated with occasional notes of hysteria that hinted in the direction of 'going postal'. Two strong young men we hired carried out several defunct appliances, sharp old bed frames, railings formerly on our front porch (In 1994 I had visions of incorporating them into an island for the kitchen-- wouldn't that have been adorable? wwit) and all manner of heavy items. In 2 hours, half the cellar was perfectly cavernous. "My" side still suffers from an over-population of cookie sheets, many of which are older than Lynn, humongous platters and a large set of fish plates with which I am reluctant to part. (my English professor would be so proud I wrote such an absurd sentence just to avoid the last word being 'with') Oops.

In all this, it is natural to take inventory of the past and try to look to what lies ahead. Some people (not very many, but some) live 10-15 years with MM. Most of those who survive the longest have had a stem cell transplant, (sometimes 2). It is possible. When asked his dreams for a future once his MM is in remission, Jim still wants to stay the course and continue his life's work of redefining the limits on radiation exposure. See, even after 40 years' evidence to the contrary, I still hoped he MIGHT say, "why, Beloved, I want to sail with you around the world, and sketch you while you sleep! (Smacking forehead) I'm apparently a slow learner.

The last medical appointment revealed Jim had lost 3 more pounds, putting him at 136. His red blood cells were down to 20, so he needed a transfusion of two units of blood, which added another 6 hours to the appointment. He has also been given a medication to help him feel hungry. Forget the Revlamid... that's the one they should have clearly marked so someone doesn't it take accidentally.

Optimistic signs are that he relished two doughnuts (not on the celiac diet, but, 'oh well') Saturday and woke me at 6 am today to tell me he thought a "Whopper" from Burger King might be something he could eat. Not at 6 am, my friend. Even if I were willing to get up and drive there. Hopefully having fantasies of junk food is gonna put calories into his diet even if we never get there.

PS: One night later, he even came along for the ride to BK and ordered the aforementioned Double Whopper with a thick shake on the side. I was convinced it was a fools errand, but went along with it to humor him. And he FINISHED it! Several hours later, no repercussions, so this is real progress.