Here we go. Tomorrow is the big day. This week has been about undergoing conditioning chemo to prepare my body for the transplant.
Most people hear the word transplant and think it involves surgery. In the case of blood cancers it’s simply a blood transfusion. I say ‘simply’, it’s not like the many blood transfusions I’ve had since being diagnosed, this one has profound implications.
This week I’ve been isolated in a hospital room undergoing chemotherapy that has the sole goal of killing my bone marrow. The bone marrow produces the stem cells which produces the blood cells (red blood cells, white blood cells and platelets). In the case of Leukaemia it’s the white blood cells that are the problem.
It has been very similar to all the chemo I’ve been through previously. If all goes to plan, this could be my final day and I’ll never need it again.
It was going pretty well until yesterday. I had an allergic reaction to the day 6 chemo. It’s fairly common and they gave me pre-meds to try and prevent the reaction. I got close to the end of the 4-hour infusion and within seconds the reaction started (I think the pre-meds had worn off) - rash and swelling in my face, sickness and diarrhoea, fever. It’s happened before and I wasn’t too worried. It took them sometime to get it under control but I’m now ok for the final chemo today.
I also had an x-ray in my left foot. About 3 weeks ago I noticed my left foot had swollen up and become incredibly tender. This week the consultant looked at it and thought it may be gout brought on by all the meds. He got a rheumatologist to look at it, who concurred, but booked me in for an x-ray anyway just to check for other things. Bizarrely, the x-ray revealed a lump of metal in my big toe. How long it’s been there or how it even got there without me noticing is a mystery. It could be entirely unrelated and the swelling could still be gout. Either way, it’s too dangerous to cut my toe open now. The metal will have to stay there for the time being. I’m on meds for gout anyway as part of the conditioning treatment. The steroids will hopefully deal with the swelling.
Today requires close planning and timing. I have to reach a certain hydration level before they give me the IV chemo and there has to be 24 hours between chemo and the transplant.
My hair had started to grow back during the maintenance chemo that I’ve had in the last 6 weeks. I’ve been told to expect to lose it all again - probably around the middle of next week.
Transplant day, also known as zero day or re-birth day is when the fun begins. I know what to expect with chemo and how to deal with it. The transplant, however, is a big mystery. No one can say for certain how my body will react.
Sometime this week the donor has had the procedure to donate his bone marrow. I’m not allowed to know who the donor is, and my hospital aren’t allowed to know either. Once delivered, they have 72 hours to get it into me. Unfortunately, the survival chance is a bit lower for an unrelated matched donor than a sibling. Them’s the breaks.
The fact that a healthy donor is volunteering to have a bone marrow biopsy for a complete stranger is amazing to me. It’s one thing giving blood or signing consent to give up your organs when you die, this is another thing entirely. The donor could save my life. I hope one day I can properly offer my thanks.
Unlike a normal blood transfusion which is managed by the nurses, this one is all managed by the transplant team. The team will come into my room, set up the infusion into my central line (Hickman line) and slowly deliver the stem cells over a period of about 2 hours. My family will be here in the room. The isolation room is due to the lack of an immune system. All staff and visitors have to enter an ante-room, get into a gown, gloves and face mask before entering my room. Anyone who has visited Covid patients in hospital will be very familiar with this.
Once delivered, the scary stuff could start pretty quickly - within minutes. The main risk is graft versus host disease (GvHD). The transplanted cells can start to attack the other cells in my body. I’ve been told the body could reactivate anything I’ve had in the past - chicken pox, mumps, etc. Vaccination history is no longer a factor. It could also go after my organs, which is a little more scary.
I can expect to stay another 3-5 weeks in hospital in isolation and under close observation. After this time, they should have a good idea whether the transplant has been a success.
One of the things that I find amazing and never really thought about is that my DNA is going to change. DNA is in the blood. I’ll have a mix of my own DNA and the donor’s DNA.
The Road Ahead
From today, they will give me drugs to continue to suppress my immune system for a few months. This is a very dangerous time. I have to be really careful about who and what I come into contact with as a simple cold can spell disaster.
I also have to be on a neutropenic diet. Pregnant women are familiar with the basic stuff - no soft cheeses, no shell fish, etc. This goes a bit further. I must have boiled water, no salads or shop-bought sandwiches, only fruit with a peel, no takeaways or any kind of food that could have been sat around for a while (like Greggs), etc, etc. There’s a large list of what I can and can’t have. It’s going to be a pain in this ass for Rach. She’s an angel but I do worry about the toll it’s going to take on her as my carer.
I’ll need to return to hospital twice a week during the first year for blood tests. It could also be another year before I can work again. Best case scenario is that I may be able to pick up a computer and do a bit of online work after 3 months but it’s doubtful I could get insurance for a contract or get a full-time job during this time.
After a year I have to have all my childhood vaccinations and COVID jabs again. I’ll have a new immune system. I could have completely new allergies.
For the rest of my life I need to carry a transplant card with me indicating that I have irradiated blood, just in case something happens and I need a blood transfusion.
If all goes well this is the beginning of the end. Cancer takes over your life. I want to think, talk and write about something else. I even miss work.
The adventure begins tomorrow!