Immediate Needs

In August, during Round 2, Cycle B, I developed Idiopathic Thrombocytopenic Purpura (ITP). Essentially, my spleens (I have 2) are killing the platelets that my bone marrow is producing. I am on heavy doses of prednisone to compensate. For platelets, it appears to be working for now. The side effects are not good. Hoping for a more permanent solution.

The 5-wk delay for ITP has pushed my treatment schedule well beyond my short term disability (end of Nov) and it appears that I will lose my job unless I quit my chemotherapy regimen. If I quit the treatment, my chances of living beyond 5 yrs decrease by 40% according to medical studies for Hyper-CVAD protocol.

The treatment schedule has been very problematic to maintain the 3-wk cycle. Instead of 3 months to complete the first half of treatment, it has taken 4.5 months. At the same rate, treatment should be complete by the end of February, 2002.

Diagnosis Overview

I got sick in early May with Flu-like symptoms. Conditions worsened and I was finally diagnosed June 1, with Acute Lymphocytic (or Lymphoblastic) Leukemia--a cancer of the blood. Approximately 75% of my bone marrow was already infected with the cancer by early June. With no other gene abnormalities, 90% of ALL patients reach remission, and 40% live beyond 5 yrs. Philadelphia gene mutations leave the life expectancy from 11 months to 4 yrs.

How the Hyper-CVAD chemotherapy works

The whole therapy will take roughly 24 weeks or nearly half a year. There are 4 rounds of chemo, comprised of 2 different cycles (A&B). Each cycle is about 3 wks--1 wk of chemo in the hospital, 1 wk at home with blood counts dropping, & 1 wk at home with blood counts on the rise. Even though I reached official remission status roughly half way through, I must continue the entire chemotherapy to reduce the risk of relapse.

Coping

At this point, I'm very relieved to be a Christian who believes in God. I don't know if I'd have the strength to cope with this situation without it. I know that I can let my emotions run their course without affecting my core beliefs. It also gives me strength to view an unknown earthly future.

Ongoing Concerns

During each 3 week cycle, the blood counts will reach their lowest point between days 10-14. This is the time of greatest danger for infections or injuries. During this time, I need to take precautions such as not going outside, not seeing any children or anyone with colds/flu, no use of sharp ojbects, & plenty of rest.
Symptom management is important throughout the cycle. Things that can send me back to the hospital include: rashes, redness, or swelling; small red spots on the body; blurred vision; headaches; fever greater than 100.4; bleeding or bruises; resting heartrate of more than 100; severe diarrhea; vomiting
My hospital blood counts almost always have a complete differential, showing the blast (cancer cell) percentage. It is not good if this ever jumps above 5%.
Anytime the White Blood Count drops below 2.0, the danger for infection increases dramatically.
Anytime the Hemoglobin drops below 8.0, I will need a blood transfusion. Each blood transfusion always carries the risk of infection as well. It would be best if transfusions could be avoided.
If the Platelets drop below 15 (while at home--or 10 in the hospital), I will need to receive platelets. As with blood transfusions, infection is always a concern. Best not to need any...
The 3rd wk of each cycle is a recovery week. It is vitally important that my bone marrow produces enough cells to recover completely enough to be ready for the next cycle of chemotherapy.
Side effects from each of the chemo drugs is always a great concern. Cycle A drugs are harder on the heart, but easier overall. Cycle B drugs are the real crunchers and leave the body at greater risk for transfusions, platelets, & infections.
Any hospital stay is a risk. There are diseases there that you'd never encounter at home. Non-socomial (those you'd pick up in a hospital) diseases are the number 11 killer in the U.S.
The Groshing Catheter in the chest is a necessary means of giving chemotherapy and drawing blood during the whole period. The site is closely monitored daily for infection and receives a clean dressing every week. NO INFECTIONS!
Day-to-day coping is a continuous hurdle. It is not difficult slip into the "unfairness" dilemma by looking at other healthy people. It's not hard to feel sorry for myself either or very alone at times. I also find it difficult at times to ask for help. I often feel like I'm imposing a burden. Staying positive is sometimes a great chore, but worth it. Everyone's support through calls, mail, & email has helped a lot.
Those of you who know my family should offer your support for them, too. Sometimes I think it's harder for them to handle my condition than it is for me.

Tips for those of you who pray

Little is known what causes this type of Leukemia. Radiation & exposures to benzene products are two possible items. The label for what causes Leukemia is called a Gene Injury. This is a gene mutation. It is not hereditary. I would surmise from this, that if the chemotherapy wipes out all the cancer cells, and I get a miracle healing for whatever Gene Injury activated the Leukemia, then I should be completely cured.
No new infections or diseases!
No ill side effects from any chemo drugs
No accidents or injuries
No oversights/mistakes in medical care
No problems with pharmacies/medications
No problems with insurance coverage for necessary procedures/medications
No problems with disability coverage
No problems with continued job security
This is an emotional drain on me quite often. Pray that I will have insight into the positive alternatives available to me. I want to look forward to what's before me, instead of regretting things in the past. I want to be thankful for what I have and not dwell on what I've lost. And last, but not least: NO FEAR.
Pray also for my family, too. Not only do they need emotional & spiritual support, but logistical support for visits to the Columbus area to see me and wisdom to care for me.

The Good Report

It is not often I can say I hear God speaking to me. I entered ER on June 1, 2001, thinking I had Lyme's Disease. I heard the words, "You will live and not die" inside my heart. It did not mean much to me then. Not many die from Lyme's. Two hours later my doctor told me I had the Acute form Leukemia. Folks with this disease live 6 wks to 3 months if untreated. Now the words spoken to my heart earlier had much greater meaning!
I contracted a Vancomycin Resistent Enterococcus (VRE) during Cycle B. Two years ago, it would have been untreatable. Treatment with a brand new antibiotic, Zyvox began right away. Untreated, the bacteria can infect the blood stream & heart. Once it gets there, only 50% of the people survive the infection. An abscess was found. Most all must be surgically removed. This one just "went away". I'm told this is highly unlikely. I'll take my miracle, thank you very much!
Chemotherapy continues near "on schedule" with little side effects. My blood numbers have continued to be very good and considered "on target".
Once my platelets dropped to zero. The only side effects were small red dots on my body. Spontaneous bleeding can occur with low platelets. Thank God I made it through that one, too!
No Meningitis found during severe neck & back & right side pain episode in ER & hospital stays!
Trip to OSU for Bone Marrow Transplant (BMT) consultation was a success! BMT not necessary at this point! My chances of staying in remission for 5 yrs or more are equal to BMT rates (~50%), but don't carry the 20% mortality rate that the BMT does up front.
Had second bone marrow biopsy and results are clean. The "R" word is now here...REMISSION!!!
Everyone's support has been greatly appreciated. My survival attitude and good humor have gotten me through many hard times and have positively affected those who've treated me in medical care.