I realized today that it has been a month since my May 23rd update. The days just fly by and it becomes more and more of a challenge to carve out time for writing. Thank you for your continued prayers, e-mails of concern and encouragement. I will provide an update in reverse chronological order.
We learned yesterday that May's positive fungal culture from my lungs was identified as Penicillium. The sensitivities showed that it is most responsive to the Posaconazole (antifungal that I take daily). Perplexing. It appears although the fungus is present in my lungs that the Posaconazole might be keeping it from going into a full-blown dangerous infection in my lungs. The second best drug choice for this Penicillium fungi is IV Micafungin that I take often, so depending upon what last week's culture reveals, IV antifungals loom. Yuck.
I saw my doctor yesterday because she leaves on vacation tomorrow. We are both concerned because several new problems exist and without the commander-in-chief of my medical team, I am lost. Currently, we are addressing:
-Penicillium fungi identified from lungs and worsening of cough
-Platelets further declined - I now have bleeding gums and bruises from head to toe. My doctors have suspected ITP (autoimmune destruction of my platelets) for over a month now, since my platelets are low but my hemoglobin is normal. Giant platelets were found on yesterday's blood sample, yet another sign pointing to the possibility of ITP. We need to resolve this dilemma.
-Neutropenic for the first time since January
-All of the biopsy stitches were removed yesterday and one site on my back is infected - oral and topical prescription antibiotics are prescribed for that. Earlier in the month, I had three suspicious skin lesions biopsied by my dermatologist. Skin cancer remains a very high risk in leukemia patients such as myself. I praise God that all three sites were benign.
-Continued pain/complications from the fall (more details below). The foot drop (from nerve damage in right leg/foot) is worsening and my right foot "locks" in a toes pointed down position. It is very painful to try to "unlock" the position. I had physical therapy today so I am sore from that.
-I had my most difficult IVIG treatment this week. With the Gammunex brand, I usually do not have many side effects. This week, I was nauseated and had a bad headache the entire eight hours it infused. In the middle of the infusion, the nurse noticed that the "op-site" (clear plastic covering they stick over the iv site) was causing a reaction on my skin - it was blood red and remains very red, so my doctor said to apply prescription steroid cream to that site.
On June 2, I fell down a flight of ceramic tiled steps. I was carrying items in both hands, so I couldn't break the fall and I ended the tumble by hitting my head into the door at the bottom of the stairs. Needless to say, I have been in alot of pain since then and have had to begin physical therapy. With low low platelets, I have been covered from bruises from the fall and the biopsies. I sprained my right wrist and left ankle and messed up my left knee. My doctor told me that I need to use a cane to prevent further falls, but I must admit, my pride is standing in the way of that. We went by the medical supply store to buy a cane and I developed "cane rebellion" and would not go in - maybe another day. Lil Man takes every bat, stick and I imagine canes and beats on things like Bam Bam of Flintstone fame, so the cane might not work with him.
You might recall that I am claustrophobic when it comes to MRI's. After the fall, the doctor ordered an MRI. The tech put me into the MRI machine and I felt that moment of panic. I asked if she could remove the headphones she had put on me as they made me feel more restricted. She informed me that they had to remain on because of the noise of the MRI. I repositioned my arms and was beginning to wonder if I could stay in the machine for an hour when my new favorite song came on in the headphones. The MRI technician knows to put on my favorite Christian music station and "Blessings" began to play. I know for certain, that the Holy Spirit orchestrated that moment for me, to bring peace to my troubled soul. I immediately calmed and almost fell asleep at one point during the MRI.
The lyrics to "Blessings" by Larua Story:
We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things
'Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe
When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise
The MRI report revealed that the fall worsened the four herniated discs that were present prior to the fall; a fifth disc was ruptured by the fall and torn and is the villain responsible for the worsening of the numbness in my leg, loss of strength and increased pain. Normally, my doctor said she would begin with steroid injections into these discs, however, I consulted with a pain management doctor last year and he said I was not a "good candidate" for these procedures, so that door is closed. My doctor arranged for me to begin some physical therapy and other interventions as we sort through other possibilities. The x-rays of my foot revealed no broken bones, however I have injured a ligament in the bottom of my foot and I have plantar fascitis.
I had another infection in my eye since the last update and two skin infections (fungal and bacterial). And a bout with an adrenal crisis caused by a new medication wrap up this month in review.
I remain hopeful and my peace and joy are found in Him, thankfully, and are not based upon the circumstances of this world. I have learned to be content no matter my circumstance (as Paul recommended to us). My oncologist told me, "I have never had a patient who battled cancer for 15 straight years and who never took an anti-depressant or a pain medication like you." He is a Hindu and often asks me about my Source of strength and hope. All glory be to God. He is my source of comfort and encouragement each day. And I know He loves each of you every bit as much as He loves me, so rejoice in that in the midst of your sufferings.