Preparations
The original dates for my transplant were supposed to be admission to the hospital around the 7/8th of November and the transplant would take place on the 15th. Due to my OHSS the transplant needed to be pushed back so that I could recover from one thing before beginning a whole new process.
On Wednesday Nov. 9th while I was getting a bag of platelets I received a call from the Transplant Coordinator who corresponds with me from the Cancer Clinic. She called to tell me that there were a few new dates they had chosen which moved into December. Admission would be around the 6th of Dec and my big day would take place on the 15th. The last thing she said was I am to be starting preparations in the next few weeks for my transplant.
I had already done my egg collection, dental appointment, echocardiogram, pulmonary function test and virology testing. To further prepare I would need:
- A (third) bone marrow biopsy done to check on the status of my marrow.
- A CT scan done.
- An injection of Lupron to halt the division of cells in my ovaries.
- A consult with a radiation oncologist.
- A pre-transplant eye assessment.
- A doctor's exam ensuring that I am healthy enough for the transplant.
- A Hickman Line inserted into my chest in preparation for the numerous blood tests and the actual bone marrow transplantation.
If all that proceeded without any hiccups then we'd move forward and I'd be admitted to the BMT unit at the Royal University Hospital. There I'd begin chemotherapy and have my total body irradiation before the transplant.
During the phone call she slipped in that I would no longer have my original transplant doctor whom I'd been meeting with for a few months (Dr. Sabry) and would switch to a different doctor (Dr. Bosch). I got really worked up over that since I had heard good things about Dr. Sabry's results as a doctor and trusted his judgement fully. I had only briefly met Dr. Bosch one day while he was covering for my hematologist. I requested a meeting with him and two days later my family and I went to see whose hands my life was now in.
Within minutes of meeting Dr. Bosch our fears started slipping away. He was very knowledgeable and very reassuring. He explained that he would not be my sole doctor but there are five transplant doctors who meet three times a week and discuss the transplant patients. They had already been talking about my case for a few months. He also explained that the doctor on the ward, Dr. Assem would be the doctor that I see every day. Dr. Bosch had a much more positive approach than Dr. Sabry (who had the unfortunate job of telling me everything that could go wrong) and I was really grateful for the reassurance his confidence brought. My social worker who has to be present at all of my major doctor appointments said she could just see my family relax and it was like we could breathe again. He gave me a printout of a study that was done on the drug combination they were going to use for my treatment and how this particular combination along with the total body irradiation had been quite successful for aplastic anemia patients. When we left that day I felt quite relieved and was actually glad I had the opportunity to meet with another doctor because the more opinions and information I have, the better I feel.
The first thing that was checked off the preparation list was the bone marrow biopsy. I've had two done before so I knew what to expect but there is never an easy way to walk into a room knowing someone is going to drill into your hip bone. I took 2mg of Ativan which in any other case should have totally relaxed and spaced me out. For whatever reason, maybe the fear, maybe I took the pills too late, the Ativan didn't really work for me. Minutes before the doctor came in I was still worked up and crying instead of being blissfully carefree. We proceeded anyway and I felt certain parts of the procedure more than others. The initial freezing of the area stung quite a lot from the local anesthetic used. I felt her first attempt to get into my bone so I asked for more freezing. She gave me more and a five minute break which I thought was really considerate. Around that point I think the Ativan started to work because I was a little more relaxed and I wasn't squeezing Mom's hand so much. It took her three tries to get through the bone and she really had to put some muscle into it to get to the marrow. She happily told me, "That's a good thing because it means you have nice strong bones!" It wasn't long after that the procedure was over and they had collected three vials of bone marrow which they would test for detection of PNH (paroxysmal nocturnal hemoglobinuria). It's a rare, acquired, life threatening disease of the blood. PNH is a type of bone marrow failure which destroys red blood cells, can produce blood clots, impair bone marrow function and has a small risk of developing leukemia. They needed to test for this to be sure that it's only aplastic anemia in my body and that I hadn't developed PNH so that the transplant could go forward as planned.
After we got home Mom drew up the Lupron injection since I was finally looped from my earlier Ativan and wouldn't feel anxious. I gave her my left butt cheek and in it went. It stung a little but I wasn't worried in the slightest because the more important issue was that I was in desperate need of a nap. I got a call a week later from the Cancer Clinic saying I was in the all clear for PNH!
The bone marrow they aspirated from my hip.
Next on the list, I needed a chest CT scan done. Mom and I went to St. Paul's hospital where they started an IV, brought me into a room with a big circular machine and injected a dye through the IV. The dye would provide a contrast for the scanner and light up a screen that would show them my vascular system to determine if there were any abnormalities and serve as a comparison for later on. Then the machine started up and the mechanism inside began to spin round and round and made me feel dizzy. They warned me that the dye would make me feel like I wet myself and sure enough, two minutes into the scan I thought there was going to be a big puddle left on the bed when I stood up. I couldn't believe how strong the sensation was that I had just wet myself! The process only took around 10 minutes and I was back out in no time. I didn't feel anything other than the ghost "pee" and was glad it was so easy. Afterwards Mom treated me to dinner at the Cactus Club and I got to see some of my old coworkers which was really nice. Overall this part of the pre-transplant journey was just too easy.
The pre-transplant eye assessment was also nothing to write home to your mom about. They used all of their machines except for three on me and tested for various things. This was another one of those appointments that serves as a baseline to compare once the transplant is over. One of the side effects that can happen after a transplant is a disease called dry-eye and it can take a while to develop so I have a three month, six month and one year checkup to make sure that everything is as it should be.
The consult with the radiation oncologist went quite well but was a much longer appointment than I expected. I thought it would be a meeting to discuss any side effects, questions or fears I might have but it turned out to be a meeting with Dr. Wright and one of the nurses followed by a full body CT scan. Once we finished talking I was sent to change into a hospital gown and have this big medical bean bag moulded around my body that slowly had the air sucked out so that on the day of my radiation, my body would be in the exact same position. This was important because instead of targeting one area to kill any cancerous cells they wanted to disperse the radiation evenly throughout my entire body to help wipe out my immune system. The moulding took a long time because they needed it to line up with lasers they had on the ceiling that centered my body to be exactly even. Once I was perfectly centered it was time for the CT scan which took 5 millimeter slice images of my body all the way from my head to my toes. These would later be compiled into a full image of my body and everything inside. That's how they can calculate how much radiation to give at each section of my body since my head would need much less radiation than my torso. The positioning of my body was crucial so there would be no dosage errors. Once the scan was over they needed to give me one last reference point for the day of radiation and it was a little tiny tattoo ink dot a ways below my belly button. My first tattoo!! If my parents find out they're going to be soo mad!! Ha ha. Even though it's tiny they said it would be there forever and I'm actually oddly proud of it. Dr. Wright and the staff were just phenomenal and made me feel so comfortable every step of the way that it felt more like an exciting adventure than a daunting task.
The last and probably scariest part of preparation was getting my Hickman line inserted. We had booked it to happen on Dec. 1 but I got a call from my Coordinator at the Cancer Clinic on Nov. 30 saying that my donor needed to undergo further testing. That meant my transplant had been delayed so if I wanted, my Hickman could be postponed as well. I told her I definitely didn't want it in earlier than necessary because from my experience with the PICC line I had in my arm, these lines complicate your life. I thought to myself 'If my donor needs further testing and isn't cleared I'll need a new donor which could take months. It's easy for someone on the phone to say "Get it now and you'll have it for when you need it" but they aren't the ones that have to live with it every day, compromise their showers, have the lines flushed with saline to keep the lines clear, have the dressing changed twice a week or risk getting an infection from it.' After I got off the phone I was quite upset. I had gone through all of the necessary prep work only to have everything on the edge of falling through at the last minute. I had been told that they would know if the donor was cleared in one week's time so by the next Friday I would know for sure whether it was still happening or not. The week went by and I got a call on Wednesday Dec. 7 saying they hadn't heard anything from the donor agency. On Friday Dec. 9 I called them to find out because they had reassured me they'd know by this day but once again they had nothing to tell me. They explained that likely the papers would be faxed over the weekend so I would get a call first thing Monday morning to let me know. Monday morning comes, no call. My Hickman line was booked to be inserted at 1:30 later that same day because if the donor is cleared, my transplant will still happen on Dec. 22. If the donor isn't cleared well then I'm stuck with a Hickman line in my neck until we find another donor. I struggled with that information for quite a bit because I did not want to live an extra few months with a tube in my body when it might not need to be there. I went to the Cancer Clinic for bloodwork then up to the oncology day centre to get a much needed bag of platelets before they cut into my neck. As I was getting the platelets my Coordinator came in and told me she was sorry but the papers hadn't come through and she still didn't know if my donor would be cleared for transplant - hours before I was to get my line. For the first time in all of my appointments I cried in front of a medical personnel and I think it really made her understand how frustrating this was for me and how much it was affecting my life. I ended up getting the Hickman line put in that day without knowing whether or not my donor was still medically viable.
The insertion of the tube itself was quite the experience. I took 2mg of Ativan long enough before the procedure for me to feel on cloud 9 by the time they were ready for me. They separated my face from my neck with a cloth curtain so that I wouldn't be able to see what was going on. This was definitely one procedure where I did not have any desire whatsoever to see what was happening. Mom was not allowed in the operating room this time and so I latched onto a nurse's hand and she stayed there with me throughout the entire procedure. The freezing stung again quite a bit but after that I didn't feel any pain, just lots of pressure. The nurse calmly explained to me what they were doing as the procedure went along and it helped me get through it. The worst part was when they had to pull the tubing through because of the resistance of my skin it felt like the tubing was ridged and they were really dragging instead of sliding the line through. Once they got the tubing out from the hole in my neck they pulled it back down to make sure it was in the correct position and they checked their progress constantly under radiography. After everything was deemed good to go I was stitched up and wheeled out to the recovery area. I was monitored for two hours to make sure I wasn't bleeding and it took a while to sleep off the meds. Once I woke I got to go home where I slept even more. That evening I felt good enough to join my relatives for my cousin's 41st birthday at Fuddruckers, though I moved like Frankenstein. I was so scared to even turn my head in fear that I would misplace or somehow dislodge the line so when I had to turn my head I turned my whole body. I think I had a few people giving me the side eye but I had just enough Ativan left in my system to not give a damn and enjoy a good burger with a whole lot of cheese on my fries.
