These past 4 years in the late 1990's were occupied with educating myself about CLL. If you could only see the file cabinets of materials along with my electronic file library that contain all of my CLL research information. The contents would rival a small library on this disease. I learned quickly that no one on the face of the earth had more at stake than me. So if I was going to make educated choices for myself, I had best learn all that I could about the leukemia threatening to steal my life. I would encourage anyone facing a serious, chronic health challenge to do the same. You will never regret the knowledge that you assimilate about the disease that is threatening your very being.
This chapter of leukemia history includes my initiation of travel to the National Cancer Institute at the National Institutes of Health in Bethesda, Maryland. There I had the honor and privilege to be cared for by Drs. Gerald Marti and Bruce Cheson, both exceptional CLL minds who possess compassion for their patients as well. Both doctors continue to advise my local physicians and myself during critical times of infections and/or treatment decisions.
I also faced my first exposure to chemotherapy and monoclonal antibody therapies. My first treatment was planned in May 2002. I wanted to feel well for our daughter's fall wedding, so the decision was made to begin treatment since my white blood count has escalated to over 350,000 (a normal count would be around 5000-10,000). Our oldest daughter (oldest by 3 minutes since she is a twin) accompanied me on what we thought would be an uneventful week of Fludarabine infusions. Things quickly fell apart and my husband and other family members had to travel the nearly 700 mile trip to the NCI where I had ended up in ICU. I had a serious reaction to the Fludarabine and then a more serious reaction to the Rituxan. The planned 5 day outpatient stay ended up being a 2 week inpatient stay, part of that being in ICU. Upon returning to home, a serious drug rash erupted and covered my entire body from head to toe. We tried every remedy and treatment imaginable to calm the itching. Nothing worked. Biopsies and photographs sent back to the NCI confirmed the drug rash and the doctors there said it was one of the worst drug rashes they had ever encountered.
In April 2003, I was hospitalized at the local hospital and was treated again with Fludarabine and Rituxan. Although with heavy premedications, I avoided the serious reactions and drug rash, I did have drastic declines in my counts and blood transfusions were required. In September 2003, I again was treated locally with single-agent Fludarabine. Dehydration and transfusions were again required as supportive care. These treatment attempts were planned to help put me in a partial remission for our next daughter's wedding in early 2004. Again, my plan succeeded and I had felt relatively well for both of these important life events.
I did not repeat treatment until October 2004. I decided upon a different approach using only the monoclonal antibody Rituxan. This was the drug that had caused a near fatal reaction in 2002. I must admit that it takes much grit and determination to allow a substance to flow through one's veins after it nearly killed me. God was faithful and I did all four infusions in the ICU where I was carefully monitored. Although I tolerated the infusions relatively well, my immune function quickly diminished and I ended up with 5 serious infections (shingles, fungal infection, eye infection, bronchitis, and a sinus infection). I spent nearly 2 weeks in ICU and after coming home to recover in early November, I realized that the odds were against my returning to work. I had to resign from my beloved Program Director position at an Inner-City program for adults and children. Helping the hopeless and the needy was and is my passion and to not be able to continue with that position was heart breaking for me.
Along with my beloved family physician, we concocted a "brew" of complementary treatments to use in an effort to extend the partial remission I had achieved with Rituxan. And as I write this review in 2008, I have not had to face conventional therapy since then. I believe these complementary additions along with God's help have given me a fairly long time without having to face traditional cancer therapy. Among these complementary treatments were green tea extract (EGCG), curcumin, Singulair, fish oil, and others too numerous to mention. I focused on reducing the overall inflammation in my body as inflammation plays a role in many chronic illnesses.
This chapter of leukemia history also became punctuated with two additional serious challenges. I began to develop mulitple anaphylactic drug reactions. To date, I have had around ten anaphylactic drug reactions. To introduce most all drugs, I now first must be desensitized in the hospital. This has further complicated my care.
Also, my degree of immunosuppression has escalated due to the leukemia disease progression and the treatment with immunosuppressive chemotherapy agents. This increased my rate of serious infections and more time being spent in the hospital. Yet, at the end of 2004, I marveled that I had lived nearly 8 years with a disease that threatened to rob me of my life on a daily basis.
I know God's intervention was alive and active each and every day. During one hospital ICU stay during this time frame, I was very ill and around midnight I asked the Lord to please allow me to open my Bible to one particular Scripture that He wanted me to know and depend upon. I opened my Bible and my eyes fell upon Proverbs 9:11.
"For by Me your days will be multiplied and years added unto your life."
What a precious, priceless verse that was handed to me by my Heavenly Father. I rejoiced and wept at His faithfulness. Many days since that evening in ICU, I have returned to that Scripture. It has reassured me that He is walking beside me, ever-present, all-knowing, constantly directing each moment of my life. I am confident that I will not depart this temporary housing of mine called a body, one moment before He has prepared my Heavenly Home for me.
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