A reprieve from the hum-drum.

Nothing new to report this week, really. It was a total hair-ball to get Jim's Revlamid, even with the aforementioned problems. No sense in boring details, but it ended with me chasing down a UPS truck on Highland Avenue somewhere between the Library and the Town Hall (about 5 blocks). Jim's chemo schedule had two days of missing it, in the middle, due to glitches, but I assume that isn't hugely meaningful.

For your loyalty and good will, I will stop writing now and invite you to a site that has given me much pleasure. The photographer has an amazing eye, and the soul of an artist.

http://soulofthegarden.com/intro.html

Bookmark this and set this aside until you have some time to look through the images the artist has photographed. I started with Paris, but eventually worked my way through the whole thing. It is almost too rich for one sitting, but it does represent a celebration of things I most admire.

Things Looking Up a Little

One in three people develop cancer in their lifetime. For one in four, it is the cause of death. So if you are our age, it isn't your imagination that you hear about more and more cases. It is simply that people aren't dying of diseases like polio, nor small pox, nor diphtheria. Cancer, which is actually many diseases with a single process, has merely risen to the top of the ranks. As we age, our chances of having those rogue cells develop becomes greater.

With multiple myeloma, only 15,000 cases are diagnosed each year in a country whose population is 304,000,000 (give or take) making it roughly a 1 in 20,000 chance that any particular person will get it. It represents only 1% of all cancers, and 2% of cancer deaths. And wouldn't ya know, Jim got it.

Today we sat waiting for him to be called into the lab at Beth Israel, one of the finest hospitals in Boston. As he rose to get his blood collected, he hooked one of the feet of his cane on a chair, and started a slow-motion spiral that seemed destined to leave him sprawled on the floor. To my astonishment I heard a familiar voice loudly exclaim, "Jee-sus Christ!!". Against all odds, he managed to regain his balance while all the receptionists, nurses and interns leapt to their feet and simultaneously moved in our direction. Of course, Jim was mortified but otherwise unharmed. And after a moment I realized the voice summoning the Lord in a Jewish hospital was none other than mine. All I could envision was a pile of bone fragments lying on the floor in Jim's new shirt and pants. Falling is the greatest (avoidable) hazard Jim faces, so... well, that's my story and I am sticking to it. I am happy to report lightening did not strike!

The Revlamid continues to slowly lower the cancer burden in Jim's bones, and although we have JUST now reach a new low, we'll gratefully take what we can get. He is anemic, enough so that he may need a blood transfusion, but that explains some of the recent sleepiness. His BP was 85/55 when we arrived at B.I. Actually, he did very well today at the hospital, and even asked for soup for dinner! Before bedtime, he commented that he really did feel better than he has in weeks.

Amusing side note... when we returned home (he even volunteered to push the cart when I insisted I needed to stop at Trader Joe's near the hospital because they have a wine department, and a girl's gotta live, ya know?) there were several phone messages. Both were from our community hospital, now a satellite of Beth Israel, where Jim was admitted briefly in March. Their radiology department was calling to schedule an MRI...ordered back in March. Luckily for us, the MDs in Boston had performed it in March when he was re-admitted through their ER. (you remember!)

Reminds us of why we drive the extra miles to the city.

Que Sera Sera

I wonder where we were at the moment it began, when the first cell of this dreadful disease mutated in Jim's body and refused to die. Because of his involvement in RSH (Radiation, Science, and Health), I have sat through lectures and read papers explaining apoptosis (the cellular suicide going on millions of times in your body each day) among other details of cellular biology. At some random moment, one cell begins to grow and multiply out of control. It seems somehow unfair that we were unaware of instant such a monumental change taking place in our lives. In my heart, I know it was at least 3 years ago, but most likely much longer ago than that. We are already coming up on the late-August first anniversary of his diagnosis.

I remember a few years ago he was complaining about his legs and hips. Jim rarely complains (whereas I find complaining of a headache almost as effective as taking Alleve). But this kept him in bed off and on, and we chalked it up to not enough exercise and the ravages of time. Not long after, he had several trips to the emergency room because his fever spiked, his heart and BP were crazy and he was just a mess. They tested for lyme disease the first time, then the next time, they sent him home with no particular diagnosis. Finally I demanded that our family doctor keep him in the hospital until she could tell me what was going on. After many tests, they decided he had celiac, which, while true, didn't feel right to me. Celiacs manifest all kinds of symptoms, but fever was not among them.

We changed doctors, and lost another 6 months making the adjustment, and concentrating on his blood pressure, the benefits of walking, and diabetes meds. If not for the ER doctor who noticed broken vertebrae on a routine chest x-ray, we might have lost more time discovering the beast. I kept pleading with them to consider his abject exhaustion, only to be dismissed with "well, you know, when you get older, you start to slow down. Maybe you should nap too." Like I need encouragement.

Yesterday Jim did eat a little food, for the first time in over a month. But my fear that he would become too weak for the stem cell transplant has been realized. Until we can get him up and walking around, he is a poor candidate for the SCT according to his oncologist. This isn't the end of the road by any means... tons of people keep the disease at bay with ongoing chemo. We have known from get-go that this would always be a game of pushing the disease back, not curing it.

And so we go on from here, accepting what is, and clinging to faith that things will work out as they are meant to.

Down Time

Life hurtles forward with entire weeks sifting between my fingers. Jim continues to maintain a steady and predictable course. We had an appointment yesterday with the oncologist, and he felt Jim was improving... based more on observation than numbers since the blood tests hadn't all come back. He is weighing the possibility of scheduling the Stem Cell Transplant for about a month from now. Who knows? We will get excited when it finally is a fait accompli! Meanwhile, Jim rests most of the day, reading a little, and that's about it. He seems to have retreated into an emotional dry-dock, not answering the phone, not even going through the motions much any more. We need the SCT and the promise of feeling better if he hopes to avoid total physical and emotional atrophy.

One of the unexpected benefits of this whole thing is that I discover that my super-woman control-freak tendencies have gotten flabby (along with a few other things.) Once upon a time, I was convinced each bit of news would morph into a mandate for me to go "fix" everything and everyone. And upon reflection, I think, at times, I did a helluva job. Now, however, I pause and consider the cost/benefit of my getting involved...prioritizing, if you will. If someone else will "fix" it, then I take a step back. If there is an argument I am apt to fold quickly. Very little carries enough importance for me to get satisfaction from "winning". Same with advice. One lesson I have learned is that most people who seek advice already know what they are going to do, so my repeating myself is an exercise in total futility. I have developed an aversion to getting other people's "issues" all over me. Hopefully I can learn to moderate, to distinguish the places where I can really make a difference, as opposed to being the sponge, mopping up after someone's hysterical vent. At this ripe old age, I am finally realizing dispassion isn't always a bad thing.

A little post script to this is that Jim just heard from the oncologist, who wants to keep him on an additional round of Revlamid, which would take any hope of SCT into the Fall. But it seems to be tackling the cancer very well, and the hope is that he would be in better condition to have the SCT succeed in restoring him to good health. So it looks like we will have another month or two of "down" time. In MM, down time is a good thing.