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.
5 comments:
Where DO you find the pictures????
The King is no match for you......there's just no accounting for taste. But we'll take it...whatever works!
Love you all........
On the Market...
ugh.
More changes.
Did I mention I'm not thrilled with this slippery-slope of changes which seem, inevitably, to land me in an ocean-of-churning waves, sharks and seaweed with bugs in it. Clearly I didn't take my happy pill today.....Could SOMEONE find me a damn happy pill???
You are a wonder, Mom. Your optimism and ability to keep you eye on the prize, your faith focused and clear and your stamina fully charged....renders me speechless. You remind me to work harder at being better. Thanks! You ARE the best.
Just do what I do and keep your head firmly planted in the sand :<
Linda is the inspiration for us all - noone, I mean noone has ever seen their way through crisis' the way she has/does. If I could have half the strength, half the fortitude, half the sheer will or half the optimism, I would consider myself extrememly fortunate.
I have lived, loved and learned from my sister my entire life, and after 52 years, with every passing day, she teaches me more about the kind of person I aspire to be than anyone I have encountered or ever will. I'm still working on it.
Whether they know it or not, her children are amazingly like her and handle the curves they have been thrown in a similar (age appropriate) manner.
I thank the Lord every day that he gave me the gift of being in this family - and no matter the mountains we have had to climb, we always reach the summit somehow - together - stronger and closer than we were before we began. Linda at the helm, with all of us pulling or pushing whichever one needs the most help at that moment.
We will get through the current, sometimes heart and gut wrenching
challenges with the same love, strength and humor that have seen us to this point.
<3
BTW Lynn.......seaweed with bugs in it!!! Excellent analogy!
You are a realistic optimist!! Sometimes it is necessary to move on to another place. This has been a home filled with good things, fond memories and love.
A move will bring fewer things (minimalism can be good), more good memories and still the love.
Good luck with the process ahead.
B
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