Friday, July 15, 2011

The lady in the teardrop dress

Ever remember something from a dream, or series of dreams, that you had as a little kid?  Last week, as I was driving home from visiting my friend Linda in hospice (see my last post), a memory pushed its way into my consciousness for the first time in many decades. 

I don't really remember my dreams.  If I had to list every dream that I can remember, there may be two or three, total.  And with all the chemotherapy I've had in the last two years, "chemo brain" has really taken its toll.  (See my Jan. 19, 2010 post on this subject.)  But that day, thinking about Linda, I remembered my dreams about the lady in the teardrop dress.  I must have been about five or six when I had them.  All I remember is that she was really nice and pretty, she wore a teardrop shaped dress (whatever that is), which I think was gold, and I was excited whenever she came to me.  I can't remember what she said, what we did or anything else about the dreams. I just knew that they were special.

When Linda relapsed, I went into a bit of a spin.  Linda's recovery was going great, better than mine.  There was nothing that anyone could have done to prevent her from relapsing, and I knew that it could have been me just as easily as her.  It was very sobering and difficult to process.  But I think that the lady in the teardrop dress came back to me, as a memory this time, to bring me a message of comfort:  I'm going to be ok; she is with me and will stay with me.  Maybe she's an angel.  Maybe I made her up in my dreams as a gift to myself when I was little.  It doesn't matter where she came from.  She helped me focus on the loving aspects of Linda's tragic ordeal.  And there were many.

Linda died earlier this week, on July 11th, in her mid 50s.  Today was the funeral and burial.  As I left the cemetery, her husband, Joe, said, "Kath, you have to beat this thing -- especially now that she's gone."  What Joe didn't know was that, in a private moment with Linda at the hospice center, I made her a promise:  to do all the things that we were planning to do, now for both of us.  We vowed that when we recovered, we would get involved with fundraisers, help with donor drives, educate people about leukemia, help other patients, speak out as much as possible.... I will keep my promise to my friend.

I am indescribably grateful to the Federico family, Joe, Marc, Jon, Michael, Pete and Yolanda, not only for the love and tenderness they had for Linda, but for the love and support they have given me.  They, along with the lady in the teardrop dress, made these last three weeks truly amazing.


Wednesday, July 6, 2011

Life's Extremes

Why is life always so extreme?  I wouldn't mind a couple of years of boring and uneventful.  How we respond to extremes may be the only thing that we can control when they stop us in our tracks.  Sometimes it's easy.  Here's an example:

Not satisfied with the plan to wait 3 months to figure out if the lung lesion I wrote about in my last couple of posts is a tumor or an infection, I asked Dr. Rowley if there was something more we could do.  He suggested a follow up chest CT to compare to the PET/CT a month earlier.  (A CT shows much more detail than a PET, which is a broader scan from mid skull to mid thigh.  A PET/CT combines both, with the CT honing in on a specific area.)  I sent the images to Dr. Georgiades at Johns Hopkins, and he called me with unexpected news.  He said that the lesion has gotten smaller, and that he thinks it's an infection because "cancer doesn't shrink by itself."  I told him I was never so happy to have a lung infection!  No tumor, no need for an ablation!  I was so relieved, I walked around dazed for quite a while.  Avoiding a surgical procedure is huge, since every medical intervention seems to have a domino effect on the progress of my recovery.  This news bolsters my theory that maybe the lung metastases have all been killed.  One would think that any lingering cancer seeds would have sprouted at a time when I had absolutely no immune system, right?  Responding to this extreme was easy. 

But I still have a lung infection to deal with.  Once we learned that the lesion is an infection, I began a course of heavy duty antibiotics, which, predictably, is wreaking havoc on my stomach.  I can barely eat anything, and as I write this, I dread my next attempt at a meal.  I'm down to 90 pounds and very tired.  I've realized the difference between energy and stamina.  Energy can be rallied short term.  Stamina is a whole different ballgame.  It's tempting to turn my exciting news into something negative, but I remind myself that these symptoms are a welcome alternative to having a lung tumor.

Here's an example of an extreme that's not so easy to respond to: 

Two weeks ago I received a call from my friend Linda's husband, Joe.  I met Linda during my pre-transplant chemo treatments last September.  She was also fighting relapsed AML and we shared the same basic game plan to beat leukemia for the second time.  We both had unrelated male donors, likely from Europe, and Linda got her bone marrow transplant the day after I got my stem cell transplant.   We became friends and kept up with each other after leaving the hospital.  Joe was calling to tell me that Linda had relapsed again.  I was devastated.  Joe was devastated.  I couldn't even imagine how their 3 sons, young men just figuring out what to do with their lives, were coping.  I tried to call on all the spiritual principles I know to be true, to find a way to process this horrible news, but I came up empty.  The next day I learned that Linda had had a stroke the night before.  This was a major setback because it left her too weak to receive treatment for the leukemia.

AML produces immature white blood cells that grow like crazy, forming a sludge in the bloodstream.  Healthy blood can't get to vital organs because of this sludge and, if I were to guess, this is why she had the stroke.  Normally, someone in this situation would receive more chemotherapy to put them into remission before receiving an infusion of lymphocytes from the donor.  Lymphocytes are among several different types of white blood cells.  They produce "natural killer cells," or NK cells, which kill cancer.  A lymphocyte infusion is the best shot for recovery from relapse within a year of transplant.  It's kind of a long shot, but it's usually the best shot.  Unfortunately for Linda, the stroke kept her from being able to receive chemo, which would have been the necessary first step.

Linda is now in hospice.  I've seen her several times, and Linda herself is showing me a different way to respond to this unthinkable situation.  She is facing her death with such grace, it's hard to stay in a place of fear.  She is surrounded by so many people who love her, all she has to do is put out her hand and there's someone there to take it.  In knowing that, she seems free.  It's the most amazing thing to witness.

After so many terrifying free falls over the past 11 years on this roller coaster called cancer, I really thought I had a handle on death.  Watching myself respond to Linda's tragic relapse, I realize that I'm not as advanced as I thought.  But I'm closer, only because Joe, Marc, Jon, Michael and their wonderful family have allowed me to be a part of their last two weeks.  Pain and grief are in the forecast.   There's no avoiding it.  For me, I hope to temper these feelings by focusing on Linda's incredible will and the love that surrounds her.

The extremes of life are what we remember the most, the times that make us either grow, or break us.  The choice -- which I think is the hardest thing we face -- is up to us.