DAY 141

Well, finally I can say that things are starting to improve for Jan. At our last doctor's visit Jan complained of headaches and dizziness when getting up from a seated or reclined position. The doctor didn't really offer any reasonable explanation other than to suggest that she may still be suffering some residual effects from her fall three weeks ago that resulted in our emergency room visit. He wants to just take a 'wait and see' approach. Fortunately, the headaches and dizziness have become less frequent in the past several days. The severe back pains that she had also had improved, so the planned steroid injection procedure was cancelled. The unexpected news that we received at that doctor's visit was that Jan's liver function tests were abnormally high. As a result her steroid medication (Prednisone) was increased to 20mg daily. We were disappointed to learn that we needed to increase the steroids, knowing all the unpleasant side effects of the medication. Once the liver function test results improve, we expect the steroids to be reduced again. We have more labs, and a doctor's visit, next Tuesday. In the meantime, Jan's mobility is improving, although at a slow pace. Her back pain continues to be bothersome, but not to the extent that they were a few weeks ago. All in all, things are moving in good and positive direction. We haven't had any major setbacks in the past two weeks, so that's progress!

CANCER IS HARD

During the past nine months I have learned that cancer is hard. In the future, I will always have a profound respect for anyone dealing with this disease. As I reflect on these past months, it’s hard to believe what Jan has had to endure, including…………

Three months in the hospital
Three months in an apartment near Moffitt
Over 700 tubes of blood drawn
Three rounds of chemotherapy
Mouth sores
Hallucinations
Two bronchoscope procedures to identify pneumonia infections
Four gastro intestinal biopsies to confirm Graft vs. Host disease
Numerous CT Scans and MRIs
BK virus infection causing one month of incontinence
E-Coli infection
Fungal pneumonia
Eight bone marrow biopsies
Two compression fractures
Kyphoplasty procedure to repair the spinal fractures
Steroid induced diabetes
Weakened muscles and puffy face associated with high dose steroids
Numerous episodes of dehydration and hypertension
Several blood and platelet transfusions
Anxiety and depression
Patchy skin
Nausea and headaches
Several falls, one serious which resulted in hitting her head on our brick hearth and requiring a 9-1-1 call, emergency room visit, and CT Scan.

However, through it all, Jan has persevered. I wonder sometimes how she has managed to cope. I don’t think I would have done as well. We still have some hurdles, but we see brighter days ahead. Today is Day-129 post-transplant. Each day brings us closer to better health.

DAY - 121

Well, today marks one week since Jan's emergency room visit last Thursday. She still has a baseball size bruise on the back of her head, but has not experienced any aftereffects of the accident. She does not recall that day at all, and in many ways, that may be a good thing. She is still experiencing low back pain which can range from a bothersome ache, to a sharp and extremely painful episode. Today we met with a nurse practitioner who deals with Pain Management. She advised that we increase the dosage of Oxycodone. The problem with these narcotic drugs is that they make Jan very drowsy. While it does subside the pain, it doesn't really help efforts to regain the strength and stamina that she still needs to improve on. So, one day at a time, one problem at a time. Right now we will work on getting her some relief from the back pain, then we'll work on building up those muscles that have been weakened so much by the steroid treatments. We are scheduled to meet with another member of the Pain Management Team on Monday and consideration will be given at that time on whether or not to administer steroid injections directly into the painful area of the back in hopes of reducing inflammation and pain.