RELAPSE is not a BAD WORD
That's a pic of me icing my booboo on my head cos I had accidentally bumped my head on the toilet counter edge. Totally my own fault. I had to go for a head MRI to rule out bleeding and such after that. Not so fun. LOL. But hey...if I can actually take a selfie, that means I'm still me right? Hahaha!
I know I have been keeping very quiet in the recent weeks. For good reason.
So to date I have been battling AML since 11th Oct 2021. Had 3 rounds of chemo in 2021 that lead up to my transplant on 8th Mar 2022. I thought that would be the be all of this AML thing and I would be able to put it behind me and get on with the rest of my life. Well, clearly God had other plans for me.
Life since 18th May 2022 has not been the easiest for me. I went in for a stem cell top out but eventually found out that my AML relapsed, I transferred hospitals and I started targeted treatment on the 7th of June 2022. Currently I am in my 2nd cycle of targeted treatment.
My targeted treatment involves oral chemo (expensive meds) but it's still chemo. A lot has happened since this recent hospital admission. I will explain later.
How do I feel about the relapse?
Disappointed and fearful of course. Angry? Ansty and grumpy?
Oh and also ugly. My hair is growing out in all directions and body is sometimes fat and sometimes normal.
But then again there is always good even within the bad.
The journey for me seems to be a lot more internal and mental this time round. When before I relied on whatsapping with friends, video calls, online shopping and other activities to get by, this time there is a lot more silence. I go internal, dig deep, ask myself what is the meaning of life, why me and why not someone else and most importantly of all rely 100% on God.
It started as little bargins
At that time in Novena hospital, I was in a lot of pain because of the trombose hemerroid that I had. I also had a rash and fever and an ache in my side. I asked God for a physical sign that he would heal me or make things better tomorrow. I was expecting him to take away or make one of the 3 things better. But he topped that. My Doctor prescribed a little pill called arcoxia that covered the pain and fever. So that was the physical sign - arcoxia. Hmmmm.
Then some close friend started sending me songs, scripture verses. Usually I'm a very proud person. If I don't like you, I won't even look at what you suggested for me because in my mind, I got it covered. However, this time I remained open and listened - to God's message sent through his little messengers. So I know that in every trial, God my Sheperd goes before me, every valley and every trial. In every thing that happens to me, God shields me or never gives me something that he knows I cannot handle. Or he also gives me the way out. God is truly a good God!
I have a spiritual relationship with God and it's continually evolving.
So to date, I have had fever many many times over, rash on my upper arms and legs. That resolved while in Novena. Then I came over to Gleneagles. Fever free for a long time. Until one day my temperature spiked to 39 degrees. Just one episode thankfully. Then fever and rash again. When I say fever, I mean chills first, then feeling really hot and tired. Like your body had a full body workout. To date - I have had 3 biosies for the rash. 2 in my rigth arm and 1 in my right leg. Also countless blood cultures and my central line taken out to test for infection. I must thank my Doctors, espeically my Infectious Disease Doctor to carefully monitored the iv antibiotics to combat all these, and my main doctor who coordinated with him and ran the main treatment.
PAIN IN THE BUTT
seems to be one of the overall themes this time round. Mine wasn't even just piles but called trombose hemerroid. I had 2 MRIs done for this (one in Novena and one in Gleneagles) Full marks to the nurse taking care of me that day I was pushed down for MRI. I had taken tramadol which makes me woosy and drowsy. My nurse took such good care of me from head to tail (all while working a double shift!) Thank you Hazel!
The taking out of the line. Most upsetting and inconvenient!
As mentioned earlier, my line was taken out to test for infection. That meant that I needed to be poked in order to administer the IV antibiotics, potasium, administer blood transfusion and so on. So this temporary line is called a branula. I have had many inserted as they said my veins were small and bumpy. In 1 and a half days, I have met all 3 Resident Medical Officers in Gleneagles! LOL.
Then there was the failed line insertion because the radiographer said that my veins were too small. He wanted to do line insertion via the neck and called my Dr who wisely said not to do anything that day and that he would come back and discuss with me. (otherwise he would be dead before he even comes back from holiday)
Bruises gotten from failed PICC Line Insertion
Number of branulas I had inserted. There's actually more not in this pic!
What does Grace look like in times like this?
In all the tough situtations I have been in recently, some of which I did not respond with grace or delight, God clearly showed me that he delights in me very much. I have to admit. He had the perfect solution to all my trials.
This includes the actual line insertion. Dr's instructions was to have a hickman line inserted (in the chest) but the Dr in charge decided to reassess the veins in my arms. So when I woke from sedation (yes that's not a usual thing to have for line insertion too. Not sure why it was arranged for me haha) the line was in my right arm and not my chest. To my relief really.
Also why I had an anethesiologist to insert the last branula I am also not sure! He came to my room to have the branula inserted, saw my art on the wall and asked if I were a painter and if I earned my money through selling my art. I told him I only started painting seriously while I was ill. That's when he said the philosophical thing - that in every bad thing that happens there is always something good. He is 100% right. Look at my art. Everytime I am upset or have a new adversity, my art skill improves by another level. (see below for the art I put up in my hospital room. Amazing right?)
Some awards for my doctors ... they really deserve it for working so hard!
Dr Teo - Most colour coordinated and fasionably dressed doctor. Trendy colours I must add!
Dr Wong - Most consistent dresser. Very predicatable! Khaki and blues and short sleeved shirts heeheehee!
Dr Ong - Most buff doctor. Hahaha
Dr Toh - The person I like to see most when my bum hurts!
Dr Lee - Top award for causing me the most scar tissue (cos of bone marrow aspirations hahaha). Also most consistent Sunday dresser! Always the same polo shirt LOL!
the physical discomfort and the loss of autonomy in a hospital makes it difficult to be who we are. Its not easy to reclaim our humanity and sense of humour through all these ordeals at the same time i am encouraged by your observations and grace
Tough times never last
tough people do!
🙏🏻🙏🏻🙌🏻Take care & get well Leanna
Take lots of care Leanna. Keeping you in my prayers and look forward to having coffee again when you are fully recovered