Transplant 2 Day 9

My day started at 3 am with the incessant ringing of an alarm about five feet from my head... my IV pole had run out of saline solution and was squawking at me.  The nurse comes and puts up a new bag; she decides to do my bloodwork since I'm wide awake already, rather than waking me up in two hours.  She does my vitals and takes my blood, and I go back to sleep.  You would think that sending the blood down at 3 am that I would have my results by 7:30... but it took til 8:00.  Platelets are still less than 10, whites are less than 0.5, and my hemoglobin was 75 (down from 80, but that's two days in a row where I don't need blood).  

The hematologist came in very early and very briefly.  He wanted to talk about the blood bank.  He had spoken with them this morning.  They no longer think that my platelet issue has to do with HLA and are now thinking that it must also be a result of the biodrug.  So they gave me platelets today.  The doctor was trying to get the blood bank to get a couple of matched platelet units next week to see if it makes a difference.  In the meantime, I will be getting regular pooled platelets as needed.  I'm really happy about this as my skin is taking a beating with minor petechiae (broken small blood vessels) and skin abrasions on my lower legs and feet.  I also have it starting between my fingers too.  I'm hoping that this will heal and not get any worse over the next few days.  That's all the doctor wanted to talk about today, as he was busy with clinic downstairs in the cancer clinic.  I didn't see him again today.

I had been in contact with my brother, Clarence, and he came up with my Dad for a visit this morning.  I had had my shower and was having a quiet day.  We were able to have a wonderful visit together and even played some cards.  We really enjoyed that!  It was a bit of life from the outside in the hospital.

Dad and Clarence were there to see me get my platelet "lunch".  The rest of the afternoon was pretty quiet.  I had a nice sleep.  The dietician also came and gave me full marks for my eating.  I am on a calorie count and for my stage of the process, I am eating exceptionally well.  This is important to keep my systems working right.  I ate well tonight at supper too - better than the past few days.  

Karen came tonight to visit and we had a quiet, short evening together.  We reflected about where we were one year ago today.  On April 4, 2012, Barb and I went to the Cancer Clinic and we were expecting to get some form of drug that had revolutionized Chronic Myelogenous Leukemia (CML).  We were pleased with this diagnosis as it was one of the preferable leukemias because it has good drugs and good prognosis.  Twelve years ago, CML would have been a death sentence, but now, with medical advances, they have been able to work wonders.  We had been put on a trial before we had even gotten there for the next generation of these types of drugs and were told that we would get them free for the length of the trial.  The doctors were expecting very good results.  So we went in with relative hope and optimism, not happy to have leukemia but looking forward to the confirmation of CML since it offered some of the best solutions for adult leukemia.  We get in the office and the doctor comes in with bad news.  I did not test positive for the Philadelphia chromosome (a translocation on the DNA which is found in CML patients).  Instead, I was given the name Myeloproliferative disorder and the prognosis was not very good.  We had gone from a fairly secure short-midterm future, to a stem cell transplant as my only option for treatment.  Further testing was done and I was eventually given the name CMML as the official name of my cancer - Chronic Myelomonocytic Leukemia.  

A year ago, I wrote a family email to everyone explaining this diagnosis and our reaction.  You can read through that by linking back here to the introduction posts of my blog.

Two transplants later and here we are.  We already fight the fear of second failure and now we also have to fight the fear of the chemotherapy manufacturer mixup and how it will affect the success of this transplant.  If we let our minds run wild, it can really feel like we are doomed for failure and the honest fear is that the Lord is not going to grant us healing.  Yet, we don't know that.  What we do know is that the Lord's love is sure and His care for us is sure.  His promises to be with us to the end are solid.  So we will lean on Him as our strength and tower.  

Psalm 71:1-3

In you, O Lord, do I take refuge; let me never be put to shame!  In your righteousness, deliver me and rescue me; incline your ear to me and save me!  Be to me a rock of refuge, to which I may continually come; You have given the command to save me, for You are my rock and my fortress.