Monday, May 23, 2011

It is About Time for An Update!

I have been a slacker. And a hefty case of writer's block has continued. However, today I am at the cancer center receiving my treatment and this morning's IV steroids have lifted the brain fog and my writer's block was cured as well. I have been blogging away this morning to pass the hours and vowed that I would have an update posted before the end of the IV late today.

Worthy of celebrating and offering a praise to our Heavenly Father, is the fact that I have now not required IV antibiotics or antifungals for infections since mid-January - four months! This is a miraculous improvement for me. I have experienced continued infections but infections that have resolved with oral antibiotics. Not being attached to IVs for weeks at a time each month has improved my quality of life. Pray and believe with me that this record will continue to be broken! I spent much of last summer in ICU or at the cancer center, so I am believing that this summer I will be slammer-free and might even manage a vacation or two.

Last month we made the trip to Ohio State to consult with the leukemia specialist. It was a discouraging trip for us and I have decided against further trips. Research is vital to uncovering cures for diseases such as leukemia. However, it has been my personal experience that when consulting with the larger research centers such as OSU, that sometimes the focus is so strongly placed on clinical trial recruitment, that patient care suffers. Unfortunately, for late stage cancer patients such as myself, we do not even qualify for many of the trials. Recruitment eligibility criteria is stringent and usually my low counts, excessive infection history or history of drug reactions, excludes me from joining a clinical trial. It doesn't take a brain surgeon to know that a patient with my history is not someone that researchers are eagerly lining up to recruit. So we returned, at first, a bit discouraged, knowing that there are really no treatment options remaining there for me. Yet, it didn't take long, for the Holy Spirit to remind me, that I am trusting God to direct my paths and if I have been diverted from that pathway, it is in my best interest.

I developed a case of cellulitis (skin/tissue infection) on my face and an eye infection last month. I was desensitized to Clindamycin, which I have taken and tolerated in the past. Since I do nothing by the book, I broke out in a drug reaction rash all over my body on the third day of taking the Clindamycin. About the same time, I developed some lumps on my legs - being speckled from the rash and with egg shaped lumps, one fellow leukemia patient, diagnosed it as a good case of Easter-a-titis, since all of this transpired the week before Easter. The rash has cleared but the leg lump on my lower left leg is still present. My doctor suspects erythema nodosum. If it enlarges or does not improve, my Infectious Disease doctor said I will have to have it surgically removed for pathology.

My platelets continue to remain low and believe me, I have the bruises to prove it. Lil Man kisses those boo-boos and he is convinced they are then "all better"! What is puzzling to us, is the fact that my hemoglobin is doing well. Normally, as the bone marrow fills with leukemia cells and the marrow function is suppressed, the hemoglobin declines and then the platelets. I located a research paper that suggested in leukemia patients with normal hemoglobin but low platelets, that they be checked for H.pylori. H.pylori is a bacteria found in the gut that often is attributed to ulcer formation. A blood test was ordered and lo and behold, it returned positive for H.pylori - was this the cause of my low platelets? The puzzling piece of this information is that the test is an Ig antibody test. It can reflect that I have H.pylori OR it can be a false positive attributed to the IgG I receive in each month's treatment from 3000  blood donors. If one of these donors was H.pylori positive, that might be why my blood test returned positive. Additional testing will be ordered to make this determination.

PCP is the dangerous pneumonia that can develop in immune compromised patients with low CD 4 counts. My CD 4 count is 159 today which is very concerning (below 200 increases the risk of PCP). My last PCP PCR antigen test had "indeterminate" results. My Infectious Disease doctor said that result might indicate early stage PCP has developed, so we are carefully watching for any worsening of breathing and respiratory symptoms. I also had a positive fungal culture return on lung sputum. We are watching and waiting to determine if the symptoms warrant the introduction of IV antifungals (the drug I have to take 7 days a week for 6 weeks). Please pray specifically for my lungs - a great majority of leukemia patients are killed by respiratory infections - and both fungal lung infections and PCP can be killers. I am trusting the Holy Spirit to prompt my spirit, if I need to more aggressively respond to these two test results.

Thank you for your continued prayers and support. I am blessed.


Anonymous said...

I have read your blog via another. My husband is seen at OSU, in his case because he is such a rare case, he is studied top to bottom , inside out. In the long run it's the same story late stage. We have been very fortunate to be at OSU because our local care is very unfortunate, the fact he's still alive is a miricale. local onc gave up at the mention of us seeing a speacilist. Now the problem is huge looking for a local onc to work with the speacilist because the travel will become a problem. Good luck to you, glad you have a local cancer center that is helpful.

justme said...

So glad to see you blogging again, Stacie. Will be praying for wisdom for you. Keep hanging in there! :)