Tomorrow is my 30th day since I was discharged from the hospital. They said that most patients get readmitted in two to three weeks time because of acquired infection or LBM and I am lucky to be one of the few who reached the one month and counting period. Post transplant, especially the first 120 days, is the most difficult part of all. Most of the patients I have talked to would rather bury the memory in the deepest recesses of their mind. Sometimes I have to do the same to be able to sleep but it seems that the constant pain in my back would not make me forget. For a week now my low back pain although tolerable is such a nuisance. I can’t even sit long enough to read or do something else. If I force to sit down for a long time, the pain would shoot up at my nape area to my head. Three mornings ago I woke up unable to move my knees. They seemed to lock themselves and now give me discomfort when walking. I am not some sadist to enjoy all these but I am not complaining this time. I have been thru these pains and so much more .
What a way to celebrate the Easter Sunday of 2010, considering it was my first post transplant day. I happily announced to almost everyone that my ordeal was finally over. I successfully received and wholeheartedly accepted my sister’s bone marrow. I was just to wait for two to three weeks for the new bone marrow to engraft and produce the blood components I needed to survive. I was elated, euphoric even and I felt so free! I needed something to do, something that will help me on the days to come when the dreaded effects of chemo drugs and the possible start of GVHD will start. My goal was to defeat the physical symptoms through “mind over matter” and “Knowing your enemy”. I devoured books pertaining to medications and more. I acted as if I was back in med school. I thought I was ready to face my post transplant period ALONE but all my efforts were in vain for not one prepared me of what was to come.
My second week post transplant, my new bone marrow started to produce new blood cells. The same week I also woke up with one big, painful sore on my tongue. Forewarned, I did not worry about it confident that though it was painful, it was tolerable. I am all set to experience this pain most post transplant (patients) are all so afraid about. Mind over matter, my mind was ready. The following day another sore came out, and since then everyday a new one would just pop out of nowhere until my tongue became swollen and it would come out of my mouth. I could not speak because of the pain and at night I could not sleep, as besides the pain, saliva would flow up to my neck. Just with one sore it was painful enough, but with every inch of tongue, it was excruciatingly painful. The “one night popping” sore did not stop in the tongue. It also grew inside my throat and I believe up to my anus because every time I excreted, I writhed in pain. It would take me an hour plus buckets of sweat just to use the bathroom, which was more than five to six times a day. I could not eat; I could not speak because of severe pain 24 hours a day. I did my best to conquer the pain; I tried to suffer through it all on my own!
It was only at night that I could not hide the torture. In my few minutes of sleep I would dream that I was well playing with my children, and then the three of them would sit in my chest I could not breath, I would moan in pain. My sister would wake me up always telling me I sound like in too much pain, to which I would answer I was just having a bad dream. Even my mind refused to accept that I was in pain. Every day I waited for the doctor’s promise that the sore will go away one by one the way they came, instead it worsened. Everything that was given to me, from IV medication to per orem medication would cause severe abdominal pain. Even the simple magnesium and potassium that was supposed to be normal components of my body would make me crawl in my bed in pain. It felt like a sore rubbed with pepper. The “hotness” would creep into my skin and skin me alive. I stopped counting the coming weeks as the torture of my gut continued. I was already placed on TPN as I could not swallow anymore despite my willingness to.
For weeks they kept on asking me if I wanted the pain management team to come in, but I would answer “…I can take the pain; I have a very high threshold for pain….” I can make it, “mind over matter!” Although at one point in time when the pain was at its “best”, I was the one who requested for the pain management team to come in. “I needed someone, anyone to abate the pain.” I was then hooked on fentanyl drip. Like a miracle it helped lessen the pain and the relief was such a pleasure that I thought it was the best thing that ever happened in my life. The drip was under my own control, so I did not allow even a little discomfort as I would press it once I awakened so that not an atom of pain could touch me. The pain free feelings given by the fentanyl made me selfishly and horribly wish for death. I thought if my sickness will make me live this kind of pain all the time, then I would rather have a swift one. The sleep the fentanyl was giving me was an unimaginable relief. It gave me so much rest that I wanted to rest for good.
I was in this state for almost a week, wanting nothing but relief, wishing for things to be always that comfortable. Not even the voice of my husband would take me away from my comfort zone. Not even the voices of my angels (my children) would stop me from continually dripping myself with the only thing that made me feel satisfied (fentanyl). As their day of visit was always a Sunday, the last thing I would hear from them was we came from Sunday school and we have something for you. Works of art they do in Sunday school that I used to keep and cherish, but during that time, these works did not matter anymore. Then one day my eldest, my “warrior” child, asked “mom why are you always asleep when we visit, are you still tired? Dad said you are not getting well? Don’t you want to get well anymore?”
A seven year old, made to face the reality that his mom might not probably get well because she refuses to. It was my wake up call! As a mother, I have been so selfish, wishing for comfort. I had forgotten that they too (my little children) were made to make sacrifices of not having their mom long enough. I was so selfish I forgot that I promised that I will be with him on his 7th birthday, then on my second son’s 5th birthday. I promised that I will be there already before classes began, to tutor them with their homework. I promised that I would finish the make believe story of the three baboons which they love so much.
I was so selfish I forgot that I have given them hope that I would return to them and we will do so many things together. I realized that their longing for a mother and the fear they harbored was so much torturing than my physical pain. The sacrifices they were forced to take were so much more than mine, it made me so ashamed of myself. I was ashamed of my selfish wish for my own COMFORT. I did not think of the other people hoping unceasingly that I would take courage and do my very best to return to them. “…It is only by frequent repetition that a child learns her lesson….”. It occurred to me then that I was again under test! For the first time in three weeks that I was in pain, I thought of the One who had been watching over me during my entire ordeal.
After my successful second transplant attempt, through His higher way, I thought I could walk on my own the rest of the journey through “mind over matter”. I let go of my hold on Him the way I did when I got frustrated during my first transplant attempt. I freed myself from HIM in FRUSTRATION, I also freed from Him after VICTORY! When will I ever learn? What else WOULD He not and COULD not do for me? He has saved me so many times in my life and yet I wanted to be free of Him each time, for reasons I did not fully understand then! In whatever emotional state as long as I could see MY OWN WAY OUT, I detached from Him. My stubborn heart and my foolish dependence on what can be proven and tangible keeps me from fully comprehending that there is nothing in this earth that is not of Him. From the beating of my heart to the smallest sore I had, was all His and in His control. He used these to teach my heart the real meaning of the cliché that “…I will never make it here on earth or in heaven without Him….”. His reality and existence was too much for my human brain to grasp, that is why I refuse to believe it!
I thought I was already calling on Him when I said a prayer but actually the prayer I said was just like wishful thinking for someone that is unseen. As before praying I already had MY OWN plans. In His mercy and hard to comprehend love for me, He made my last forty days stay in the BMT unit an experience of His reality and His ever presence in my life. For the nth time Jesus Christ called me again to “rest in Him”, and I responded the way I did before. Only this time I became aware that He had and has another invitation for me which I fail to hear before. A very soft invitation to “…abide, live, dwell, endure, await, and stand firm with Him….” He opened my eyes to the truth, again my always spoken yet not heartfelt truth, that I JUST COULD NOT LIVE APART FROM HIM!
I do have my choice not to, but His love for me would not stop Him from reaching out to me until like a child I will fully LEARN. In my present pain and in my present situation I am always attacked by the thought that I am an imbecile. MY human pride tempts me to feel useless to myself, my husband, kids and society. These thoughts always brings me down to melancholia. I am learning to counter it with God’s words, with His command that “a man should remain in the situation where he is being called to.”
In my daily reflections He always reminds me to “…shield myself with faith, use His word as sword, protect my heart with His righteousness, and wear my shoes of humility…..” all the time. I don’t really know until when I will be like this. I don’t really know how He sees me to be of service to Him this way. All I know is it took Him years to polish “Joseph the dreamer” before He placed him to the fore. Joseph, on his end just waited upon the Lord for he knew and understood completely that Jesus Christ’s way is the best way now and for always! He cheerfully served Him with the understanding that it is not the situation but the “hands” behind the situation (victory or frustration) that should be the focus of his attention!
by: Maria Ella Regondola – Cabanlet
Wednesday at 9:48pm
June 10,2010
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