Saturday, March 6, 2010

The Bomb Revisited

Dr. Birnbaum came by this afternoon with Dr. Whitlinger.  Dr. Birnbaum is the neurologist called in by Dr. Crooks.  Dr. Whitlinger is an oncologist who works with Dr. Hacket.  They delivered the bad news.  The spinal tap shows a lot of active, malignant cancer cells.  Dr. Birnbaum says the fact that the spinal fluid contains malignant cancer cells is a sign they have spread beyond the spinal area to the whole body.  His take is that the cancer is interfering with neural transmissions, which is the cause of Sue's muscle failure, as well as the cause of Sue's pain.

The local doctors said they'd report the findings to Dr. Wolf, which apparently they did.  Dr. Wolf called my cell phone later in the afternoon and I put it on speaker and set the phone on Sue's stomach, and we had a conference call with him.  He was grave and, God bless him, he's never pulled any punches. When asked for his honest prognosis, he gave it to us straight.  He says it isn't good.  He's treated a lot of myeloma patients over the years and rarely has had one this tough.  He will prescribe massive doses of Dexamethasone (40 mg/day) and the current rave drug for myeloma, Revlimid.  However, he said Sue's cancer has proven extremely resistant and, because of her 4/14 chromosome transposition, he does not want us to be overly optimisitic.  She's had Velcade (VDD) chemo treatments last summer, a Melphalan autologous stem cell transplant in September, radiation in December, and now, barely two months later, the cancer is back and aggressively advancing.  He said her time left could be in the range of "a couple of weeks to a couple of months."  He says she will not leave the hospital to begin the Dexamethasone and Revlimid, and might not leave the hospital at all if the Revlimid does not work.

In one of my earliest blog posts from May 2009 titled "The Bomb", the one where the local oncologist first informed us that Sue had multiple myeloma, I naively stated that "cancer's cancer."  A falser tautology has never been penned.  In the past ten months we have learned that there are better and worse cancers to have, and that , in the grander scale of things, multiple myeloma is one of the bad ones.  In the past ten months we have learned that the treatments for multiple myeloma have improved greatly, and that life expectancy for myeloma patients is going up.  We have followed the blogs of lots of "survivors" of multiple myeloma who are years past their diagnosis.  We have also followed the blogs of several myeloma patients who succumbed to the cancer.  We are not giving up the fight just yet, but it's looking like Sue will pull the three year post-diagnosis survival median down.

But also in the past ten months we have acutely tuned in to another lesson not specifically tied to the cancer diagnosis.  People have asked, what's Sue's prognosis?  And both Sue and I have replied that her prognosis is the same as yours and mine: None of us know when our time is going to be up.  On the other hand, she now has a better fix on the answer to that question than you or I do, and in some ways she may be better off for it.

On the lighter side, they've given Sue a pair of "mittens" to wear while she's sleeping so that she doesn't pull out her feeding tube.  They're more like boxing gloves than mittens.  In every hospital stay she's always wanted her cell phone close at hand as a "life line" to her friends and family.  She's sleeping now, with her right hand "mitten" placed on top of her cell phone in her lap.  The mittens are tightly velcroed at the wrist and, I swear, I don't know how she could ever answer that phone or make a call or even call the nurse with the call button with those big mittens on.  Or press her PCA button for pain medication activation.  On second thought, it isn't the lighter side.  It's another sad page in a sad chapter of an otherwise really good and upbeat book.

12 comments:

  1. George,
    My heart aches for both you and Sue. I just turned 56 and was diagnosed with MM the same time as Sue. I truly feel so sad for her. I too have a very wonderful husband, family and very strong support network. Unfortunately cancer is like a fungus that spreads quickly to all that love us--not only do I feel for my loved ones but for you and yours as well. My thoughts are with all of you at this very difficult time.

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  2. I am so sorry, George. How hard this must be for all of you. My prayers continue....

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  3. This is so hard for me to read so I know it is probably nearly impossible for you to type. I am continuing to pray for you, Aunt Sue and the girls.

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  4. Couldn't they put the PCA button device inside one of the mittens? This seems like cruel and unusual punishment to not provide pain solutions. My thoughts are with all of you at this difficult time.

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  5. I had to hand Bruce my computer, so that he could read it to me. My eyes were too blurry. His reading was stop and go, as he fought the tears. May God comfort you all. Love and prayers, Janice

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  6. Sandy - They did solve that problem. I asked the R.N. on duty last night to give Sue periodic pain boosters since she wouldn't be able to self activate the PCA button. The Nurse agreed to do that, but also advised me there was a way she could "free" a thumb and strap the PCA to Sue's hand. Apparently she did both because Sue was in pretty good shape this morning, pain wise and attitude wise.

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  7. I cried and cried today when my husband told me to read your blog. It was the first thing he said to me when I woke up. So prayers are being said. I am glad to hear the pain and attitude improved. George and Sue, I am so sorry.

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  8. Oh, how heavy my heart is after reading this. We are thinking of you and Sue.

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  9. This broke my heart when I read it. I really hope Dr. Wolf is wrong. I hope the Rev/Dex will be the miracle drug for Sue. We are thinking of Sue and your family.

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  10. Oh my. Hugs to both of you. I only fouind your blog last week and hardly "know" you both at all, but it is hard news to hear about another member of the "myeloma family". More hugs.

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  11. Janice BrozovskyMarch 8, 2010 at 4:54 AM

    Mom, Don and Shan are coming today with Jessica. I sure wish I could come too. All I can do from here is pray for Sue, you and the girls. Please tell her I love her.
    Janice

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  12. When the Revlimid works I think you're going to be in big trouble for posting that picture - nightie, asleep, with mittens on - the only saving grace is that Sue's hair is still too short to look messy! Fortunately my husband doesn't know how to use the camera.

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