Coming Undone

My current "hospital" book is a first novel by David Wroblewski called "The Story of Edgar Sawtelle.". Without getting into the plot, I'm going to quote a line from the book that I can't get out of my head.


"That the world could come permanently unsprung never occurred to him."


Two yeàrs ago when we first found out that there was something wrong with Jeff, that he had the dreaded C word, I remember thinking to myself that my world has now changed. My future, my unborn baby's future, and of course, Jeff's future was not going to be what I hoped. These thoughts eventually transitioned into an assumption that we would get past this, that trying times would pass and our world would soon be our own again. Never did I think, not consciously anyway, that I would need to be writing something like this two years later.


Obviously, that quote struck a chord with me because two years ago it did not occur to me that life could be so hard for so long. Do I think our lives have become permanently unsprung? No, I still do not believe that, but I do now know that one really bad thing happening to you does not somehow prevent the universe from crashing down on you again (and again).


So, right now, I need to remember that each day is a miracle, and my life will only come undone if I allow myself to accept that it has come undone. I'm stubborn, so I don't think I will be succumbing to that thought anytime soon.


**Jeff is receiving his Day -6 chemo as I write this. He just told me that he thinks Day Hospital has its sh*t together and he loves the heated blankets that Nurse Megan used to cover him up.
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Day -7

Jeff received fludarabine and cytoxan today as his first day of transplant conditioning. He tolerated both drugs fairly well, with just a little bit of nausea. He is scheduled to receive the first three days of chemo in Day Hospital. On Day -4, he'll be admitted to the inpatient wing of the cancer institute for the remainder of the protocol.

Jeff was thrilled to see JD today, and I'm glad the little man can still put a smile on his Daddy's face. As I've said before, this has been a long hard road, and it has taken its toll on everyone who is intimately involved in the situation. I am continuing my quest to live in the moment as much as possible, and have found that avoiding thoughts about what might happen is VERY liberating. Jeff has his good moments, but unfortunately, he is under such physical distress that the bad moments are currently out-weighing the good.
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Tomorrow

Tomorrow at 9 AM, Jeff will be starting chemotherapy for his mini MUD (matched unrelated donor) transplant.  Because this transplant is a "mini," the chemo is less harsh than what he has been receiving, and he is able to start things on an outpatient basis.  If you remember from the last time, the first day of transplant is called Day - 7 (minus seven).   Transplant Day, which is scheduled for the 21st, will be called Day 0.

Jeff is stable, but not feeling very well.  He has some retinal bleeding, a product of months worth of low platelets, so his vision is a little fuzzy.  The shingles are still very painful, and his energy level is very low.  The past five months have been hell on his body, and he is sick and tired of being sick and tired.

I suppose I'll eventually have more to say about the treatment of this disease and the havoc it wreaks on the patient and his family, but for now I think I'll curl up with a good book and read until I fall asleep.

**Jeff is not up for conversation, but I'm sure jokes and good stories sent via e-mail (jeff.eckert76@gmail.com) or text (512-2576) would be appreciated.

Aside from occasional shingles-related pain, Jeff is feeling okay. His pneumonia has mostly resolved itself and the nausea he was feeling for the better part of last week has finally passed. His appetite is also making a comeback, and with any luck, he'll gain back a few of the pounds he lost before chemo starts again on Saturday. He is finally making some white blood cells, but his platelets and red blood are taking their good old time. Considering all of the chemo Jeff has received over the past two years, it is not a surprise that his marrow is taking a little longer to bounce back.

Transplant Delayed & Discharged

Jeff was discharged last night, but the transplant has been delayed by a week.  His creatinine is trending downward (good news), but his shingles have been pretty painful.  He seems to think that the chest congestion caused by the pneumonia is also improving.

Jeff had fevers over the weekend, and is back in the hospital. He has a touch of pneumonia and shingles in some strange places. He is very tired, coughing quite a bit, and feeling pretty blah. His kidney functions are still elevated - that, along with the pneumonia make it unlikely that transplant chemo will start this week. At this stage in the game, it is also unlikely that anything will go completely as planned, so we'll just have to roll with it.

Goodbye Friend

Glenn Gleason's body lost its fight with AML yesterday. His spirit and strength will live on in his loving wife Amy and their beautiful children.

Rest in peace, Glenn.