The Week in Review

Thankfully Tina released a brief request to prayer to our online prayer group this week. I have had a week full of challenges and have been quite ill. I have seen some small breakthroughs this weekend, so I wanted to update my blog and thank everyone who has been praying. It was one of those weeks that I knew things were turning very seriously in the wrong direction for me.

The week in review.....

Sunday, August 29, 2010

I awoke very ill and knew that something was not right. After all of these years battling cancer, I know my body, inside and out. I recognize signs and symptoms that are warning signs that action is required. I could not even get out of bed and for me, nothing waves a red flag like that. Even on my very bad days, I set goals for myself and push to achieve them.

Monday, August 30, 2010

I continued to have a day of health challenges. My doctor and I played telephone tag all day and tried to make decisions that would benefit me. She had me go to the hospital Monday evening for a chest x-ray and the usual work-up for cancer patients who are immune compromised: blood cultures, urine cultures, CBC, CMP, CMV screening, and other tests that provide a portrait of what organism is causing the infection and how best to respond.

My doctor also thought it would be prudent while we awaited results to add the powerful antibiotic Tobramycin into my sinuses. So I began the first dose at the hospital and returned home.

Most alarming to us was the knowledge that my white count had almost tripled from 50,000 when I left ICU on August 20th to 152,000 on Monday (a normal WBC is 5000-10,000). We needed test results to reveal to us if an infection was causing this drastic increase or if the leukemia was reeling out of control.

Tuesday, August 31, 2010 and Wednesday, September 1, 2010

I continued to feel poorly - fevers, cough, and blood coming from my sinuses around the clock. I returned to the doctor on Wednesday and we were still awaiting culture results. We were suspicious that Pseudomonas could be causing these symptoms. This very serious infection nearly killed me in 2007 and I spent almost two weeks in ICU. We prayed fervently that this would not be identified as the culprit.

Thursday, September 2, 2010

Symptoms were worsening yet we didn't want to admit me to ICU and randomly select IV drugs to throw at this yet undiagnosed infection. My doctor and I made the decision that I should undergo a sinus endoscope to collect samples directly from the sinus cavities. I was prepared to leave for that and then learned that blood drawn earlier on Thursday revealed my platelets had dropped to 60,000 (normal 150,000-400,000). I was not certain if the ENT would proceed with the procedure due to risks of bleeding but we decided benefits outweighed risks. I have had this procedure many times and compared to other procedures, it is not too difficult and God protected me from bleeding concerns.

The two tests we had performed earlier in the week to determine if the leukemia was causing the drastic white blood cell increases returned and they did not indicate that the leukemia was raging. Praise God.

Friday, September 3, 2010

I returned to the doctor very early on Friday. The sinus scope samples were already growing out gram negative rods - some of the most dangerous infectious organisms to immune compromised people like myself. Pseudomonas is a gram negative rod. More concerning, my hemoglobin dropped by two points and my platelets fell into the 50,000 range. Obviously, the infection was serious and was impacting my very limited bone marrow function. We were seeing several areas under my skin where capillaries were rupturing and bleeding under my skin. We made the joint decision that we could wait no longer on the identification of the bacteria and would add yet another antibiotic.

I returned to the cancer center to be desensitized to another antibiotic. Thankfully, their hectic schedule permitted them to add my all day desensitization. I knew this was the first desensitization protocol these pharmacists would oversee since my oncologist had just moved the cancer center to another hospital.. My nurse told me that my main pharmacist from the other hospital [where I go to ICU] had recently transferred. I guess all of the hospital pharmacists were discussing how best to do this and Mark (the pharmacist who had cared for me for years) spoke up and said he had participated in dozens of desensitizations with me and he was placed in charge. I am thankful he will be at the new cancer center to help with all of my drug concerns.

The desensitization went well. Usually someone picks me up at the cancer center but I had my car with me on Friday since I didn't know all of this was going to transpire. Kevin met me there at four and I told him I thought I could make the 30 minute drive home alone. We left about 5 in heavy traffic and was about half way home when my arm felt odd. I looked down and blood was pouring down my arm. I pulled off and Kevin stopped behind me. The IV site hadn't clotted well due to my low platelets. Kevin grabbed a clean Pamper [thanks Lil Man] and applied pressure. The absorbency of the diaper worked great to prevent a further mess. My clothes, my light grey leather seat, everything had blood on it. I drove the rest of the way home with one hand steering and one hand keeping pressure on my arm. Good thing my guardian angel was riding along with me today! Even today I have a nasty black and blue bruise that covers a third of my lower left arm.

Yesterday I felt a bit better overall. Our daughter Stephanie took me back to the hospital yesterday evening for more lab work. Praise God the platelets and neutrophils were improved! That tells me the new antibiotic is working. And today the blood from my sinuses has lessened greatly. Hopefully, I am on the road to recovery yet again. Can't keep a good woman down when God is on her side!

Some of you might recall my breast milk experiment of June 2009 ~ mid August 2009. Those almost 3 months were the last time I was infection free. Also we saw my CD4 T-Cell count more than double during those three months - very important when fighting infections.

This week my doctor pondered what to do for me and suggested I locate another source of milk and give it another try to see if I can halt this year long cycle of infections and replicate last year's promising results. We have located a well run milk bank through Clarian Health with stringent testing of milk to be certain it is free from viruses, etc. Our insurance is actually sending the request for review to seek reimbursement for the milk since my doctor is actually writing a prescription for it. This will cost over $600 per month, but that is much less expensive than even one of my antibiotics or a trip to ICU. Please pray that God will make all of the details fall into place if this is in His plan for me and that after a year's battle with infection, that I will be able to report that I am INFECTION FREE.

I appreciate your prayers - even when I am silent and too ill to post an update or request for prayer. Lil Man's second birthday is this week, so I must continue to improve for that BIG DAY!

I praise God for the peace and joy and strength He is raising up in me despite the challenges around me. I will trust Him for that abundant life He has promised to us. I refuse to allow living wills or the prospect that no treatment remains for me or the suffering of my body to rob me of the joy of the tomorrows that I have remaining.

He is my Everything.