It’s a Date!

It’s been a suddenly busy few days. First was beginning the search for a place to stay in Ottawa for Pete and I.  Some hotels have extended stay options but they are not much more economical than day by day stays. The criteria make it a challenge: we need proximity to the hospital, clean, private bath and kitchen, parking, access to high speed internet, affordable. So far a few bites, but nothing really. I have to remember that the reason it was so easy in Singapore where I took my mat leave to birth Jess, we were under the care of an awesome insurance company for overseas hires. Now we are fending for ourselves, which I do find a bit odd, considering all the support the team in Ottawa provides, that they can only offer 2 places, and neither of them are optimal.  I suppose nothing will be, really, but the nicer a place is, the more conducive it is to healing.  I can bring along a few items to make wherever we end up more comforting– things like books, posters, etc. Kind of like student living.

Next was visiting my naturopath, me sharing my fears and concerns and she administering remedies both physical and spiritual. I have a certain protocol to follow to prepare myself for the transplant, mostly supplements, and at the same time I am preparing emotionally. Each night I imagine the best marrow coming to me, my body relinquishing the poor old stuff and accepting the vibrant cells that will bring me back to optimum health. More on this kind of stuff later.

Then yesterday, after weeks of living normally and thinking as if this whole affair was some twisted fantasy, I got the call. Excited as I was to know that somewhere in the world right now a donor prepares his tissue for a complete stranger, I really would have preferred that it all be happening to someone else. I was too focused to be nervous as I took in and wrote down information, coming away afterwards still a bit confused.

Yesterday is also known for the ice day  that kept kids at home. The freezing rain piled up overnight and in the morning the world was encased in glass. Even the dog was cautious, staying out only 5 minutes. As the temperature rose overnight, the crashing and crackling of ice breaking kept me awake for a time. This morning’s dusting of snow turned into a torrential flurry that stopped traffic and caused deaths, as the first snow of the season is wont to do. We managed to make it to the hematologist’s meeting without incident, except we discovered an hour later that the school had closed due to a power outage and our kids were with friends. The ferry ride into town was an experience– being up at the front is usually something I covet, but this time it was quite scary as we could see piles of waves careening over the bow and onto the windshields of the first cars. I have seen windshields freeze up instantly on days where it is rough with double digits below zero. The snow is still piling up now, a good 6 or 7 cm more than predicted.

My new “birthday” is scheduled for February 16, two days before my real birthday, six after Skyler’s, one before my niece… so many ways to measure it. So many ways to not ignore it. The details are as such: Feb. 2 meet with the oncologist. He will go over the chemo and radiation procedures and what to expect from them. This is, to me, the most daunting and frightening. I am so averse to radiation that I replaced our cordless phone with an old fashioned one, harassed Hydro One about the “Smart Meter” installed at our house, choose the pat down instead of the airport scanner… I am not paranoid, I just consider myself aware of possible dangers. And yet here we live next to a power station, surrounded by wind turbines and a slew of solar panels on our roof, positioned, coincidentally, directly over the master bedroom. You can only do so much.

Other dates of note: be in Ottawa Feb. 6 evening at the latest so that on the 7th I will have a Hickman inserted. Last time I had a PICC line in my arm that I found easy to manage after some getting used to. A Hickman in the chest sounds scary because the line goes straight into a large vein near the heart. The purpose of this is to administer drugs and withdraw blood samples more easily.  It requires a lot of attention as it can be a portal for infection.

The following day chemo begins. There are two drugs being administered: Busulfan and Fludarabine. Yikes. Looks like the latter is intravenous, so I am to check in to the hospital daily for administration and to monitor side effects, of which there are plenty. After 5 days of this, I have 2 days off. Then on the 15th I have 2 doses of radiation “therapy”. All of this preps my body for transplantation of new bone marrow, scheduled for the very next day. Some fellow  somewhere will have gone under to have 1-2 quarts of his marrow removed. The tissue goes into a cooler and is transported to me via an RCMP officer on standby.  Fresh is better than frozen, and when I know which it is, I will have a clue as to where the donor is, not that I want to compromise his location. The marrow is infused into my body via the Hickman line and takes all of 20-30 minutes.  Then we wait.

Several things went and continue to go through my mind. After yesterday’s call I felt as if the wind had been knocked out of me a bit. This was not unexpected, but after so much complacency it was a realistic slap in the face.  Until now, the only source of patient based information on what happens is from the quite dated book I am reading, authored by a BMT survivor, so I was not sure how seriously I was to take her VERY SEVERE reactions to drugs and radiation. The hell she went through, from the first chemo to the transplant and beyond, was the kind of hell that seemed even worse than what I went through 7 years ago. I was debating on which would be better– to know in advance what to expect and be prepared or pleasantly surprised, or to remain ignorant and  be surprised and not prepared.  I am thinking if things really AREN’T that bad anymore, the publisher or author should say so in the introduction to avoid people slitting their wrists unnecessarily. It really really depressed me and I had wicked dreams afterwards. Then this morning when we had the app’t with Dr D, she said that within those 20 years things have improved remarkably and some patients actually just sail right through the whole process. Please let me be in that group!  So that is what I am holding on to.


5 thoughts on “It’s a Date!

  1. Dear Sus – thank you so very much for writing this blog for us all to understand what is going on. Let me tell you – you are one brave woman. I have been praying for you like crazy, and will continue to do so.

    Best, best wishes – Nancy Stewart

  2. Hey Sus, wow…..this suddenly gets very real. Kev does have a connection in Ottawa, he’ll get in touch with her today. When will you be leaving to live in Ottawa? Lots of love. Sal

  3. I’m so glad you have a date and it’s not so far away. You couldn’t be more mentally and physically prepared for the ordeal. I hope you find a wonderful place in Ottawa and everything starts falling into place. That way you can focus on getting well and celebrating your new “birthday”.

  4. I’ve been reading your blog with great interest as my husband is going through a similar situation with MDS and taking Vidazar while waiting for a bone marrow transplant. I wish you all the very best for your transplant and sending positive thoughts and prayers to you.

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