The Middle Ages

The Story So Far Part Two (see Part One first, obviously).

Note: re-written April 26th after 'technical failure'

April 2, 2012

We arrived at Sunnybrook for my 11:00 o'clock appointment. Checked in at the main desk, did the registration thing, then went to the waiting area for my bone marrow biopsy procedure. Then we waited. Then we waited some more. I checked at the desk in this waiting area, and eventually, a 12:50, they found my chart and sent it through. Finally, at 1:30 we saw DRRB. She was very apologetic that there had been some scheduling mix-up, but they can't do the bone marrow biopsy after 12:00 since they no longer have the rooms available. So instead she examined me and talked about the treatment in general. The procedure had to be re-scheduled. Aaaargh!

April 5, 2012

We went back again for the bone marrow biopsy. This time there were only minor mix-ups. We were sent donwstairs, then sent back upstairs to get blood work done. While there, DRRB's nurse came to find me to make sure I wouldn't miss the procedure again. The procedure worked much better this time as well. DRRB got better samples, both the aspirate and the biopsy itself. And there was less pain, due to the tylenol taken ahead of time, and maybe knowing what to expect. Also, I was lying on my stomach this time instead of my side, and that was more comfortable. We still need to wait 8 days for the results though, so this still seems to be dragging.

April 13, 2012

We met with DRLC filling in for DRRB. Results were not completely final, but it looks like I have a high level of MDS, with about 15% blast cells. The cutoff for AML is 20%, so I'm not yet there but will be pretty soon. But because of my situation (age, health, etc.) they will treat me as if I had AML anyway. We talked about other options, side effects, etc. Then I went to the blood lab to give a sample for HLA testing and to give them the contact information for the SIBs so they can be tested for a match.

April 17, 2012

Yesterday (April 16th) I received a voice mail from DRRB to leave a mobile number with her assistant so she could speak with me. This morning we spoke, and she told me she had consulted with colleagues at Princess Margaret Hospital, and we discussed several things. First, the cytogenetics (i.e. the genetics of the cancer cells, not my normal ones) was not super good, nor really bad - somewhere in the middle, making the prognosis pretty good. Second, they were progressing with HLA matching, which may take a couple of weeks. (We interrupt this post to tell of future news: As of April 25th, this has not been done, because PMH never received the SIBs contacts. They were resent and I was told by the PMH coordinator that SIBs would be contacted starting April 26th. Now back to our regularly scheduled post.)

The next steps are for me to get a MUGA scan, to determine a baseline to monitor the effect of the potential heart-damaging chemo drug, and have a Hickman line put in. Following that, I should be admitted sometime next week.

DRRP told me to expect NOT to work during the inter-hospital period, and expect to be of wok for up to a full year. I was expecting maybe 6 months, so this was a surprise.

So the overall treatment plan is this: 1) in hospital induction chemotherapy, consisting of three days of one drug and seven days of another (simultaneously) followed by one month in hospital for monitoring; 2) several months of mostly out-patient consolidation chemotherapy, probably a few days a month; 3) bone-marrow transplant, from a SIB or from a match on the unrelate bone marrow donor registry; 4) several more month of post-transplant recovery.