I received my monthly IVIG all day today. My cough and fevers were worse today - it is difficult to discern if the worsening is connected to the IVIG (fever possible; cough doubtful) or if the lack of IV's has caused infections to flare.
The pulmonologist is out of the office this week, so that appointment and probably the CT will be on hold. I will have both the pulmonary function tests and my appointment with my Infectious Disease doctor on Thursday. Wednesday, I will see my family doctor and have my large quarterly lab draw, where they draw about 15 tubes of blood. I always stand in amazement, knowing that my marrow is where blood components are produced and is infiltrated by over 95% cancerous leukemia cells. Only operating on 5% marrow, I know that God's touch must be upon that very tired marrow to produce blood to compensate for all of the blood that is removed from me.
A bit of comedy for the day - most of you know I resumed my milk experiment - drinking human milk in an effort to strengthen my immune system. To my surprise, the Clarian Milk Bank actually ships my milk in baby bottles. Now, the Infectious Disease Chief at the NIH has told me that at the NIH they are vaccinating their immune compromised CLL patients with the conjugated Prevnar pneumococcal vaccine and the conjugated HiB vaccine. The pharmacy is attempting to secure these vaccines for me - routinely given to infants and small children - and soon I will begin my two series of 4 immunizations each - in another off-label attempt to protect me. My Mom, one of my oncology nurses and I laughed this morning when Mom told the nurse, "We'll be in trouble since she has reverted back to drinking milk bottles and receiving her immunizations IF she forgets her potty training skills next!" As I have written many times, desperate people will try desperate things to save their lives!
On Monday, I will have some extensive testing done by the oncologist and if the immunizations have arrived, I will receive the first Prevnar vaccine and then wait for observation of reactions at his office.
I have added more garlic, olive leaf extract, elderberry, and goldenseal to my repertoire of supplements - all have antiviral, antibacterial and antifungal properties. My doctor was most concerned about the oil of oregano perhaps causing a reaction since I plan to inhale it into my lungs, so on Wednesday, she said we would "paint" some it on the inside of one of my nasal passages while I am at her office where I can be observed for a reaction. Herbs and natural therapies have always intrigued me and once again, I believe that these creations of God could hold value for me and my improvement.
My medical team seems convinced that the splenic irradiation remains my only treatment option that has the potential to be survivable. The prospect of transplant was approached again this week - both with an unrelated donor and with cord blood - and I remain firm in my decision that transplant is not the path I am to pursue. If I had this perfectly matched related or unrelated donor, it might have more appeal. I don't want to spend what life I have on earth, living hundreds or thousands of miles from home in a hospital, away from my family and friends. I don't relish the idea of dying somewhere away from home. I don't want to ask my family to wade through the transplant process with me - it is not for wimps. I want to die on my own terms, making my own decisions until the end.
I spent most of today researching more journal articles on this therapy. Flip a coin - do you want chemotherapy drugs cruising through your veins or do you want to zap rays of radiation into your body? Hmmmmm. I need to achieve some freedom from infection and at the same time, have reasonable platelet and hemoglobin counts before radiation can begin. This decision is complicated so I have asked the Holy Spirit to direct my feet to the path I should pursue. I need doors to close on this endeavor if it will cause more harm than good. I need His peace in my mind and heart before I proceed. I had hoped that the radiation treatments would occur in late summer to early autumn, before the onset of flu and cold season and winter. This long four month cycle of infections, IV's and hospital stays has delayed that plan and if I experience a break in infection, the radiation could be ongoing through the holidays. That is a bit sad for me to think about since I am the queen of holiday planning and preparations and all of my family holiday traditions MUST GO ON!
I asked the Infectious Disease doctor at the NIH not to sugar coat his advice to me and to tell me what he foresees my future time being like. He wrote: "It is possible you have had a particularly bad year regarding respiratory infections, but I think the natural history of your disease speaks against any meaningful long-lasting improvement in the absence of treatments to control it. I would expect any period completely free of infection to be short lived." It is at times like this and with factual information from the world's best medical minds, that I must simply trust God. There may not be a human solution for me. There may not be a break in the infections. Yet, I am trusting Him with my life and I am assured that I will take my last breath only when my Heavenly Father gives His divine nod for me to come Home.
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