By the grace of God, He pulled me out of the ICU and planted me firmly in my own bed late last night! I was able to wean off of oxygen yesterday and my wise physician knows that I am safer at home - it separates me from exposure to more infections in the hospital; I sleep and rest better at home (much needed for my recovery); and the main IV drug to treat the staph "happened" to have an oral version that is equally absorbable. I made the transition from IV to oral Zyvox and was sent on my way.
My cough has improved but is still present and my temperature has returned today. The IV steroids that I required this past week for adrenal support, again, made my sugar levels out of control, so I have been receiving insulin. We arrived home late last night and I knew I needed to check my sugar and in my drug haze, I could not locate my monitor. So our best friends came to the rescue and brought a glucose monitor and strips up at midnight to me. I was so exhausted. Kevin and our friends prayed for me and they said I fell asleep while they were praying for me.
We will have to monitor my blood counts closely for the next couple of weeks - this Zyvox drug has multiple warnings for its use with patients with marrow suppression (ME). It can induce lactic acidosis which can be very dangerous, so we will be alert for those signs. I have to follow a strict low tyramine (amino acid) diet with Zyvox also.
Just as I began to have a moment of celebration of being discharged, my trusted oncologist of many years called me. He has supposedly retired :-) but has checked in on me most of this week from Maryland - even calling Kevin at 5 AM on the morning I was admitted. I can always count on Dr. M to be forthright and honest with me - traits I appreciate in my physicians. Although sometimes the truth is a challenge to digest, I believe it is imperative that no one sugar coats what might be ahead for me. He encouraged me that my family doctor and I need to begin some dialogue about my being putting on a ventilator in the future - because he stated, "Stacie, it is not a matter of IF you will be on a ventilator, it will be a matter of WHEN you will be on a ventilator." I realize that I have miraculously survived two serious lung infections in ICU in two months - a fungal infection and a staph infection. Just as easily, either of these infections could have taken my life.
It is never easy to consider, ponder and discuss end of life strategies, but I am making efforts. I have been walking around with my files with my living will, will, medical power of attorney, funeral plans, etc. for the most of the summer. I will pull these files out and try to put into words some of the most daunting planning that I will ever be asked to complete. The work has been difficult and often brings tears. I will persevere and finish these tasks as I will not leave decisions such as these for those I most love to make.
Fortunately, my nurse yesterday was Lissa. She is a 40 year veteran of that ICU department and she has cared for me for over a decade. She had a frank, open discussion about end of life strategies with me and answered some questions on ventilators, etc. for me. I know that God allowed her to be with me yesterday when I was faced with those considerations.
My NIH oncologist also told me that the splenic irradiation has been tabled for now. I knew in my heart that to begin the irradiation with infections present would be suicidal. I had hopes that the irradiation would offer some relief for me and possibly reduce the tumor load. However, I cannot risk killing myself to achieve those goals. Once again, the leukemia roller coaster is racing up and down so many hills, making swift turns from one concern to the next, and I am barely holding on for dear life.
Monday, I will return to the Cancer Center at 8 AM for my all day IVIG infusion. It will be difficult to do right now with feeling so poorly, but my doctor feels it is mandatory to have that immune support while I fight staph in my lungs and I agree.
Yesterday while I was at the hospital, my Dad and Mom came with the traveling version of a Cancer-versary party for me - a decorated tree with "14" decorations on it (since it was my 14th Cancer-versary this week). They had a plate of cupcakes and a beautiful praying hands necklace and journal for me. Thanks, Mom and Dad! I couldn't eat the cupcakes with my sugar running high from the steroids, but my nurses enjoyed them.
Your prayers are treasured.
4 comments:
Just when I think surely you won't post again, there you are, posting with such strength! I know your flesh is so weak and sick and tired, but all I see when I read your posts is a strong woman of the Lord, seeking Him and praising Him still. Amazing. Love to you and yours.
Just when I think surely you won't post again, there you are, posting with such strength! I know your flesh is so weak and sick and tired, but all I see when I read your posts is a strong woman of the Lord, seeking Him and praising Him still. Amazing. Love to you and yours.
Stacie, you are as always in my prayers. Thinking of you and sending hugs, Celeste
Dear Stacie,
I am new to the Cll Friends website and I have been following your posts on natural remedies. I had no idea that you are so sick. I don't know you personally, but your are in my prayers tonight.
Tests in May at Duke University confirmed that I have a more aggressive form of cll. I know it is only a matter of time before I am in your shoes. God bless you for being such an inspiration to other cll patients.
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