Please Pray ...... And Then Shout a Praise!

Have I ever been slothful about updating the blog! Right now, trying to remain alive and tend to all things medical is consuming almost every thought and day. As with the last update, my mind is swarming and I cannot even determine where to begin. So I will begin with this - I am still trusting God. I still have faith that He will sustain me and muliply my days. Do I wish God would reach down tonight, touch my body, heal me quickly and relieve my pain and suffering? You bet I do. Yet, I know as terribly challenging as my life is right now, that He is holding my arms up, cheering me on, saying, "You can do this, Stacie. Don't give up. Keep fighting. I am right beside you."

Since November, these two or three months have rated at the top of my challenging scale. I have remained acutely aware of one fact - I am gracious beyond words when I am so ill and I cannot request prayer - to know that so many of you are daily interceding for me in prayer to our Father. I know if I disappear from blog-a-sphere, many of you are checking in and the Holy Spirit is prompting you that I am in need. It comforts me when I am too ill to write and my brain is too oxygen deprived to think, to know that my empty written words are not even needed for the Holy Spirit to rally my prayer warriors on my behalf. God does so much better when we just step out of the way, doesn't He?

After my last update, more test results returned pointing to worsening of my already compromised immune system. I knew this was a possible risk when I began the radiation. Yet, it was one of those gut wrenching decisions I had to make. If I didn't treat the leukemia, it would threaten my life. If I did treat the leukemia, my immune system would take a beating. The consensus is that my immune deficiency is now "profound" and my radiation was officially suspended. A portion of my spirit was so disappointing for all of us knew that radiation was my "last chance" at knocking back the leukemia. (But don't dispair - God can use radiation even when it is not being actively administered to my body - I am saving the good report for the last paragraph - kind of like a cliff hanger in a good novel!)

On Friday, Mom and Dad took me to the hospital for tests. I worsened overnight on Thursday - higher fevers, declining oxygen levels, and the coughing/shortness of breath grew worse. My doctor suspected a blood clot in my lung because of my history of PE (pulmonary embolus) and due to the fact that I have been taking estrogen for the blood loss (clots are a risk of estrogen). Thankfully, the test was negative for the blood clot but the waiting for results was a bit tedious.

With no blood clot to blame for the worsening of symptoms the typical "work up" was started - blood cultures, sputum cultures, PCP silver staind, CMV antigen, fungal stains and cultures. Many of these tests take time to produce answers and we do not have the luxury of time right now. My doctor told me that if I continued to decline, she said she would have no choice but to put me back in ICU and began broad spectrum antibiotics, antivirals and antifungals while we wait on the test results. The concern remains rightfully intent and concerning that the CD4 count being so dangerously low at 62 (below 200 is considered extremely dangerous) that PCP is lurking and evading our attempts to identify it. I have been told that with my condition and that CD4 count, if PCP is detected, I could have a 50/50 chance of surviving it. But despite these dire verbal warnings, I believeonly God holds the number of days planned for my life.

Later Friday, the doctor increased steroid doses and added at-home nebulizer (breathing) treatments for me along with oxygen.Temperatures, low oxygen levels and wheezing continued and by Saturday morning, the decision was made to send me to the hospital for desensitization to IV Tobramycin. The doctor also reordered all of the cultures and stains we had done on Friday to be repeated. Research revealed that a simple blood test known as LDH is sometimes used to help diagnose PCP. If LDH is elevated it "can" be an indicator of PCP. Nothing definitive, but as medical detectives, we search for whatever clues we can find. My LDH level was negative, so that "clue" gave us a bit of relief. A bronchoscopy is our one remaining, truly accurate way to identify what is going on in my lungs. I detest the bronchoscopy (scope downt throat into lungs), but it remains a looming option.

When immune compromised patients have pulmonary symptoms present, we cannot assess our condition by fevers. It takes an immune system that is intact to mount fevers and I can be very ill and not present with a fever. Instead, monitoring the oxygen saturation levels is a more reliable method to assess worsening of infection. The doctor had my oxygen levels monitored all day Saturday at the hospital and since I have oxygen at home, she decided I was safer to go home and sleep in my own, less germy bed and return to the hospital on Sunday morning. I found a delicious cinnamon tea and I begin brewing that left and right. The steam and heat from it are soothing to my lungs and feels as though it opens up the airways some when I inhale it. We returned to the hospital again on Sunday morning to receive more IV medicaitons.

Overnight last night, the respiratory problems continued. I have never had a pulmonary infection that "felt" like this one or that has been so long-running as this infection. It has been my nemesis for two weeks. I began chilling around 1 AM - we know that when I have chills and rigors, it is time to go to the hospital since it can indicate sepsis or other serious complications for me. I piled on blankets and prayed - I didn't want to have to awaken Kevin or my doctor at that hour of the night and sometime while praying, the chills must have stopped and I dozed off.

I e-mailed my doctor around 6 AM and by 8 AM, she called me and had already consulted with my Infectious Disease doctor. There are not many doctors like dear Dr. S. She worked laborously all weekend, arranging IVs, desensitizations, medications, and my care. God certainly blessed me with many wonderful medical professionals who tread this journey with me.

PCP (p. carinii pneumocystic pneumonia) remains one of the biggest threats to my life with the even deeper immune suppression that the radiation has inflicted. Today, the Infectious Disease doctor said that he believes that I have another staph infection in my lungs (what I had in June when I was in ICU for a weeek). So I returned to the cancer center today and they desensitized me to Cleocin (antibiotic) and then proceeded with the planned IV Tobramycin (antibiotic). He warned us that I am in a position to develop a c.diff  infection - a serious complication of the colon when too many powerful antibiotics are being used. I have battled c.diff  before and I would prefer not to repeat that experience. My doctor put me on powerful probiotics that I will take every time that I take the Cleocin.

The Infectious Disease doctor also surprised us by telling my doctor that there is alot of H1N1 (swine flu) in Indiana this year. We were shocked with that information - I thought H1N1 had been buried last year. Afterall, the 24 hour news stations are not touting H1N1 like every story reported on this time last year. To err on the side of caution, he ordered a swab to look for any signs of influenza in me although I am not symptomatic of that and he said it was a very unlikely cause of the breathing problems. He said it would be too bad if we overlooked something like that as the source of the pulmonary problems. There should be an answer on that tomorrow.

Unfortunately, the blood loss continues. My hemoglobin rallied to 12.0 (finally to the normal range) on Monday and has been on a fast descending trajectory this week and is 9.0 today. Everyone keeps asking me what are the doctors going to do about the blood loss. Good question. There are options here - all with significant risk for me - however, we cannot even begin to consider those options and difficult decisions until I can breathe better and correct the pulmonary concerns. If the blood loss doesn't cease soon, there will be no alternative but to transfuse me again. Please pray specifically for God to control this "issue of blood".  We read of Him healing the lady with the "issue of blood" in Mark 5 and he told her after she was healed, "Daughter, your faith has made you well." Lord, let my faith and trust in You not waiver in the midst of all of this suffering and turmoil.

After this long-winded January in review, I want to close with a praise. All of these complications - respiratory, bleeding, infections, in and out of hospitals - have attempted to blot out a very good report. And I believe it is appropriate to close this post with that news. Somehow, someway (God's Way) as we have been utterly consumed with this chaos known as our lives right now, God has been working and using the radiation to whomp the leukemia. My radiation oncologist had told us that he anticipated for the radiation to continue working for a couple of months after the last treatment (in December).

God has been at work - even without my traveling for radiation -  we have watched my spleen shrink more; we cannot locate any enlarged lymph nodes in my body; and on Monday, I had an amazing blood report. The cancerous lymphocytes always would run around 98-99% of the total white count (normally should be around 40%). And my lymphocyte percentage was down in that 40-50% range. That is significant. I will be eager to closely review my response once all of these other complications have been resolved to discertain what degree of remission of the leukemia has been achieved.

My family doctor told me the other day, "Stacie, when are we going to celebrate that degree of remission that you have achieved?" And it dawned on both of us that we have been so engaged trying to keep me alive from all of these other dangers, that the radiation just continued to work behind the scenes on the leukemia. The one lymph node on the left side of my neck has never disappeared in 14 years with 5 different chemotherapy protocols. And I cannot find that little (big) rascal!

Praise God with me about this good news that is trying to be recognized among all of the negative reports. I am praying that God will deliver me once again from these current serious threats to my life and I will be able to be assessed and learned that the leukemia has been given the biggest black eye that we could deliver to the enemy of my health.

I told you it would be a cliff hanger closing! Thank you for your continued prayers and words of encouragement.