So now we have entered this pivotal year. Auspicious or ominous, depending, I suppose, on one’s point of view. Armageddonites aside, I do have some trepidation about this coming year. I want to be positive but I also need to be pragmatic. The best I assume, is somewhere in the middle, what one calls “cautiously optimistic”.
Christmas was really great. With school going till the 23rd, there really was no buffer time, so we launched instantly into Christmas Eve activities which ended in a singalong/get together in Nancy’s house where Chris and Sam and Pete played and jazzed up some standards. Chris also performed at the pageant at United Church the Thursday night before, where Jess played a shepherd and Skyler a sheep. The play was appropriately moving and short, and Chris’ rendition of Winter Wonderland was the best ever. I teared up somewhere along the line, realizing everything I do or experience now goes through this special filter, but talking afterwards to others, I found out I was not the only one so moved. I almost forgot about it all until Pete reminded me to avoid the cookies and treats after the show, so I made sure I was at the front of the line before everything got touched by others’ fingers. It is a strange paranoia to develop, this germophobia.
Jeff and Sameera came from the UK to visit and we split our time between the island and Kingston, where they were staying, and when the others left for Montreal the remaining gang came here, so it was a full house much of the time. By the 3rd, everyone was off on their own family thing, and that is when we left for Lac Simon in a region north of Montreal called Sepaq. Three fully equipped “rustic cabins” where we got to hang with friends from the island and Toronto, having communal dinners and crazy shrieking games with all the kids. Cheeky deer visited us at least twice a day and there was snow, something we still don’t have here in this second week of January. The kids had a blast with tubing and skiing and watching the grownups be silly. It was the perfect family thing to do before we had to get serious.
We had waited until the last minute to tell the kids what was to be expected next month. While Pete explained, Skyler turned his face so we couldn’t see him blinking blinking blinking away tears, and Jessie held out until she burst, just like I tend to do. They had a good cry and afterwards were full of questions, Skyler ever the pragmatist, needed everything to be numerical and negotiated the “what ifs” and “how longs”. Jessie had more detailed questions after, like how is this different from cancer (good question) and is it like leukemia and so on. Naturally they both wanted to sleep with mommy that night, and we had a great snuggle that lasted through the morning. Pete and I had discussed how we would broach the subject of mommy’s illness, treatment and extended absence, but I was hoping for some guidance from some support material I ordered that we had not yet received. I did today, and noticed there was very little, so even though it felt like we were not following whatever protocol had already been established for such situations, I guess we did it right anyway. As long as they feel comfortable asking questions and getting extra mommy and daddy time, we done good. They are great kids, and I have learned not to try to imagine things from their perspective because that makes it all the more burdensome and daunting.
I still get people asking me questions about all this and I need to direct them to this blog, because though I am still at the stage where this is new enough to not bother me too much, there will come a time when I will find it tedious. For now this is a venue where I can share things as they occur, which hasn’t been much lately, and later when I am fraught with chemo brain and fatigue, I assume Pete will be taking over. Right now we are still waiting to hear from Ottawa. We understand that we are specifically waiting on the donor– is he still available, healthy, has he changed his mind, etc. He is the one who now sets things in motion. Today Pete tried to call the liason to see if there was any news– of course they will call us when they know, but he is hoping to push for a date probability as a business trip in early February depends on it. Also dependent on this is my parents’ visit from Mexico and us finding a place to rent in Ottawa for 3 months. Anyway, when Pete got a hold of Sharon, he was told she was in a meeting and would call him back. Shortly after, I commented that perhaps they were meeting about me, as we were told that I am the topic of discussion every Monday and Wednesday. I wonder, after reading all about procedure and therapy and side effects, is there really that much to talk about? Is there something else they’re not telling us?
At any rate, I am going back to the clinic tomorrow to get bloodwork again, after a 2 week hiatus. Curiously, some of the last 2 counts were almost identical (Dec. 22: RBC 77, WBC 1.2, plts 50 and neut. 0.59 and Dec. 30: RBC 77, WBC 2.1, plts 55 and neut. 0.8) possibly indicating a plateau. The best news is the WBC are definitely going up. Which is really sadly ironic because pretty soon they will be decimated. Poor things.
Now that January and routines are in full swing, I have to focus on what needs to be done before February. I am making a pile of things to bring with me, books, some art the kids made, photos, an inspirational poster, art materials (something I want to get back to), writing materials (ditto), a special blanket… the pile grows. I also have to list all the responsibilities I have for the house and make them doable for Pat who will be with the kids while we’re away and for Pete, for the things I can do at a distance like pay bills and stuff. The boxes of receipts for taxes sit untouched and unwanted, the most daunting of all domestic chores that happens to fall in the thick of things, so should we file early, before we go? Yuck. I am also on the look out for chemical free lotions and creams, which I realize I will be needing. Last month I took advantage of a post holiday sale and bought 6 scarves for $20, then went online to see how to wear them. This other video was really inspiring and shows how to make great use for favourite t-shirts! Also bought a pair of earrings with a stone that purports to have healing abilities and calls on angelic support. This after a period where I didn’t want to buy anything for myself, thinking it might be a waste. So I consider this progress.
Something I have noticed in my “prep” period is how I seem to be deliberately avoiding “good” foods and choosing instead things I know aren’t the best for me. It’s possible I am thinking: why not, I’ll be eating crap soon enough, and it won’t taste like anything!
Tomorrow I will be visiting my naturopath once more before “T day”. I want alternative support, but not supplemental, as this will interfere with the treatments and is strongly frowned upon. However, I was pleased to hear that Vitamin D was acceptable, though I am sure it’s D2 and not D3. While I am on that topic, I am unclear why the sun should be avoided, so I will need to ask that, and if a full spectrum light is acceptable (an item in my go with pile). How much can I prepare my body before the onslaught? If I do a candida cleanse now, will it reduce the chances of it coming in full force when my immunity is low? This is, as I mentioned before when referring to food, one of the greatest dilemmas I face, having to abandon everything I have learned about how to be well and to surrender myself to that clinical allopathic world. I harbour a fair amount of distrust there, and hope it does not affect, consciously or otherwise, my response to treatment. It had been very frustrating not finding any guidance in this area, as everything out there is about conventional treatment; even cancer has some alternatives available, so these sites are a great place to find tips and info I can’t find otherwise.
Resources being used now:
Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients by Susan K Stewart of BMTinfonet
11th Hour Miracles: Surviving a Bone Marrow Transplant by Analisa Marquez O’Rullian
Patient Support Package from BeTheMatch.org (this I discovered through some correspondence from a MDS patient/transplant survivor!)
livestrong.com, the cancer site affiliated with Lance Armstrong