FROM QUEST TO RECOVERY

January 5th, 2009
“I have done my part,” I told Titi as I left his room around noon, “now you do yours”.
Through his coming out of local anaesthesia, he smiled and raised his thumb, ”you got it”, he mumbled.
It had been very different and hectic in the past two days. We all felt like rats running through a maze, each move and turn predecided and leading to an eventual outcome, from protocol to transplant to recovery.
Protocol for transplant started Sunday morning – I arrived bright and early before eight for my stem cell harvesting. No one was there in the room yet but I was sure the hustle and bustle was going to erupt soon. I sat in the harvesting room reading the newspaper and had started doing the crossword puzzle when Sophie walked in. She is a Jewish immigrant from Georgia (the country Russia recently invaded) and will be doing the harvesting.
She mentioned that we had to go downstairs to get the needles into my arms for the IV because there were no doctors in the department this morning…all were summoned to Gaza to aid the wounded, was the answer to my obvious query.
Luckily, I saw Uri, a doctor , with eyebrow rings, that I know. He is one of the young and bright doctors of this ward, I was told. But if you saw him on the street here or on Khao Sarn Rd., a whiz in haemato-oncology was probably the last thing on your mind, right after POTUS. Anyway, he good-naturedly did it for me before he left.
The harvesting went well and was very productive, according to all that came in to see and chat. I sat through the four hours without a potty-break but my bladder was screaming when I rushed into the bathroom afterwards. I know you all did not need to know that.
A couple of hours later, the stem cells and part of the plasma that was freshly harvested was divided into two bags and the transplant had begun. Prof. Naparsteck did this part of the transplant right in Titi’s room (#23) and through the 90 minutes of the operation, shared us with her thoughts on Gaza and her take on the current events there. She was extremely interesting and not at all one-sided. She and her husband had spent years at well-known institutes like Dana-Faber in Boston and the National Institute of Health, well-traveled and definitely knows her subject matter. Titi was very tired and chose to sleep through most of the conversation as well as the transplant. We all were very tired even before sundown but round two was looming large – the second step in this short elephant walk.
Monday morning came after a restless night for me. No food after midnight was the order due to the administration of general anaesthesia at 8:30 am. I tried to stay awake as long as possible and finally dozed off only to be awakened intermittently by an over-active mind. Extraction, transplant, recovery – on and on ad nauseam were the thoughts until the alarm rang at 6:30 am.
At 7:30, I was in Titi’s room and talked to him for a while. He was well-rested and ready for round two. After a while, it was time to move forward in the maze. The bone marrow extraction was going to take place on the 13th floor – executive international area. I got a room with the latest equipment with large windows overlooking the Mediterranean – so far so good. After a few perfunctory questions from Prof. Slavin, the anaesthesiologist walked in and proceeded to set up the equipment. I was going to be IVed into slumberland, he told me. I saw him set up the oxygen machine and mask, IV saline bag and THREE syringes, two the size I once saw vets use for horses, filled with milky liquid and a clear liquid in the small one.
Once everything was set up, I was told to climb into the bed and proceeded to wait for Prof. Slavin and his team. In the meantime, the needle was inserted into my left arm, taped and saline drips began. He also inserted the oxygen sensor onto my forefinger and gave me the oxygen mask. I inhaled deeply, and saw 100% on the monitor. I exhaled and held my breath and the monitor beeped 86%. 100-85/100-86/on and on until I thought the monitor was going paranoid. I stopped only when Prof. Slavin walked in. He said he was going to prep me first before administering the drug so as to give me minimum ‘going-under’ time. He said that 12 seconds was all it took from the time the drug went into the bloodstream to reach the brain and deliver the knockout punch. I was put under a little bit after nine and when I opened my eyes again and looked at the clock on the wall, it was 10:10. Out and back in 60 minutes…such efficiency , I thought.
There was a dull ache around where I got poked and it was very heavily bandaged and to be kept dry for 24 hours.
I felt wobbly when I got up to go to the bathroom minutes later but felt stable walking out. Hospital rules and insurance policies forced me to stay in bed for about an hour – about the time when two orderlies came and wheeled me down to the ninth floor ward. There again, one of them abandoned us at the elevator and the other one wheeled me into the aisle in front of the nursing station, again with no idea where to deposit the package. I helped him as much as I could but there was ‘no room at the inn’. I sat up and demanded that the IV be extracted at once. ‘Not for 5 hours”, one nurse (looked like Nurse Ratchett) said as several nurses walked up. “So where are you going to put me?” I said to puzzled faces. Finally, Nurse Orit, mother of a five-year old, knew how to handle the situation. “I will take off the IV after this bag is finished”, she bargained. I liked the deal.
Lek and I sat in the aisle on chairs kindly supplied by the nurses…. Prof. Slavin and his team were already inside #23 working on the transplant. He walked out some half-hour later and pronounced that the transplant went great. The bone marrow was transplanted into both sides of his pelvic bones. The only present concern was still the pains in his butt and the serrated lines there that the laser had cut into way back from Bangkok. Infection and sepsis would obviously have a headstart there if anywhere, he said.
As I sat with Lek later on in the evening having a specially-prepared extra spicy Thai chicken with vegetables from a Thai cook in the local Chinese take-out in the mall, my phone rang. It was Titi.
Frantically, I said hi and he said he had been trying to call Lek and could he talk to her. Lek just listened to him and finally said ok. Thank God he seemed all right, I thought and asked Lek what he wanted.
“Chicken from McDonald’s”, she replied. We were both quiet for a moment. It was the first time he had requested food since the quest began!
“P’Andy’s blood must be very strong”, Lek said with a smile.
COULD COMPLETE RECOVERY BE FAR BEHIND?
As I am leaving Tel Aviv tomorrow, this is the last AndyTelAviv blog but certainly not the last communication regarding Titi to all our dear friends and relatives.
We thank you all and really appreciate all your prayers and blessings to date and hope that it will continue as we all cheer and boost Titi towards total recovery.
Let’s all have a great 2009!

GRADUATION

January 2nd.,2009

Yesterday Titi completed his 6-day chemo courses capped with a low-radiation treatment in the evening. He is now pronounced ready for the next leg of this trek – the two-day transplant starting on Sunday the 4th.
His six-day course was not without the usual travails of the side effects of chemotherapy – it was once described to me as ‘hell on earth’. The body rebels and does all sorts of strange things the mind cannot accept. The mind is used to being in control and simply cannot accept the facts of uncontrolled bodily functions as well as loss of appetite for prolonged periods.
Titi weathered the ordeal with minimal fuss BUT, as Prof. Naparsteck – the department chair said, be prepared for next week (post-transplant). It will not be a Sunday walk in the park either.
She went on to map out the rest of the quest here in Tel Aviv.
Engraftment (transplant acceptance by his system) would be in about a three- week timeframe.
After 4-5 weeks, he would be able to move into separate housing and return for tests and non-oral treatments (about three times / week).
About 10-15 weeks later, he would then be able to return to Bangkok under local care and supervision.
There are always two primary concerns post-transplant: infection and recurrence. Infection will depend on how strong his immune system will grow and counter the various and numerous types of infection. Prof. Slavin, being an immunologist, will be the key person in looking and preventing infection.
Recurrence is something every cancer patient lives under the shadow of but in this case, haploidentically mismatched donor, the odds work for the patient. The patient uses his own immune system along with that of the donor which makes the total system more stronger in fighting the blast leukemia cells.
She said the patient will be declared to achieve total remission after 2-3 years. CML does not come back after that.
Meanwhile, graduation for the donor will be Saturday night after my last Neupogen shot - 8 in all – 2 a day 12 hours apart. My back and joints are already aching 50% through the shots – similar to the day after an average joe runs a mini-marathon. Normal and a good sign… the doctors say.
You are on your own here in a public hospital – the patient is taken to where he needs to go by an attendant and once at the destination, he locks the wheelchair or bed and WALKS away! If the patient was there unaccompanied and/or not aggressive enough to go up to the front of the line and ask, he is definitely at the mercy of his surroundings.
Last night, for his radiation, he was wheeled away on a bed from the ninth floor to the second level of the basement – me walking briskly behind. We went through so many turns and long tunnels that by the time we got there, I was hopelessly lost. No problem , I thought, just follow the bed. When we got there, the radiologist looked around the bed, now sans attendant, and asked me where the patient’s file was. Upstairs, if it is not here, I said.
“Could you go and get it?’ she asked.
“OK,” I answered immediately, “please draw me a map on how to get there.”
She looked at me for a while and after mumbling under her breath, picked up the phone and found an option. There was apparently no cohesive process. One department does not help out another but the work gets done and the results end up in the right hands.
My two shots of neupogen a day ended up being another constant search for somebody to give me the shots. At the start, I was given 8 packs of the prepackaged shots along with a card with a list of the times and dosages for each shot and was told I was on my own. The shots should be refrigerated and each shot should be recorded and signed.
Not a problem, I thought, until last night , when I took the package and card and went in search of a doctor or nurse to show me some merciful consideration. I was palmed off by the first two nurses and saw my ‘package’ dropped off at the desk of a male intern who was taking care of my brother during his shift. Apparently, it was HIS job and not to be assisted. Wonder which gentle soul will help me tomorrow…
The waiting period before the transplant is almost over… the transplant being the event that represents the milestone that we traveled so far and sacrificed so much to attain. We are all aware that this is just the first step in a two-year journey to shake this deadly sickness and can be assured that with the support as shown to-date from family and friends, that it is a healing and revealing journey – one that is rarely traveled in peace and comfort.
By the way, 'Happy New Year" was never once wished or uttered during the past week here. Then I found out that Roshashana (sic?) was the equivalent of the Jewish New Year and that their calendars run from September of one year to August of the next. So, there you go, I learn something new every day.
Sabai, sabai