It has been a long time coming but today I have reached 100 days post transplant. The medical team see this as an important milestone – a date to plan the next phase of treatment. Almost all Leukemia patients talk about the 100 days post transplant – it is part of the lingo!
I must admit in the early stages of my recovery post transplant I was in doubt if this day would ever come along – time seemed to move so slowly! But my mantra of ‘one day at a time’ has paid off and here I am!
The medical team have come up with a new plan over the next 6-7 weeks that should see me return to a ‘more normal state’.
By this I mean regaining my appetite, less nausea, regaining more energy and feeling a little more ‘normal’. At present I am still lacking energy and will often rest for a few hours in the afternoon. A current day can involve a walk in the morning (sometimes to the hospital for blood tests) of about 45 minutes, then breakfast, then reading or working on a project (current one is a jig-saw puzzle), lunch, a long rest, more reading, a short walk and then dinner and TV. The Commonwealth Games have been a great way to pass some time.
At times I wonder how Jan manages to cope with the slow days and lack of activity. We talk about this from time to time and she tells me that her role now is to help me return to health. It is good to have her by my side as it would be a lonely trip if you had to go through this by yourself. I am a lucky man!
The 100 days is also a trigger for a range of tests that I will have next week – including a dental check, lung function test, fasting blood tests and the all important Bone Marrow Biopsy to check for residual leukemia. This will be my 4th biopsy since diagnosis.
My new plan will unfold weekly and involves me being weaned off many of the drugs. Eventually I will only be needing two or three different drugs – yipee. Such a change from 44 tablets a day!
Today I have reduced the steroid intake from 20mg to 10mg and dropped the Valganciclovir – which has to date had a big impact on my blood counts, especially the neutrophils. Hopefully they will start to return to normal now.
It is a scary thought planning ahead 7 weeks and thinking what life might be like under a more ‘normal’ scenario, however I get ahead of myself!
For the time being it is back to ‘one day at at time’.