One Hurdle Overcome!

For those included within our wide net of contacts, this will not be news, but for other readers, I can tell you that we have found a place to stay in Ottawa during the treatment! On Tuesday we arranged to visit a place from a tip we got through emails and phone calls, and that night a last minute tip came in, so we had two places to compare on Wednesday. We went to the second one first, and were blown away at how perfect it was: an older couple about to go to Florida for a few months, wanting to help someone out. She had had surgery away from home last year so knew that kind of situation we were in. It is a condo on the 9th floor, southfacing, loads of windows and sunshine, fabulous views, all conveniences, underground parking, security, pool and gym… and less than 15 minutes from the hospital! We agreed on a price, grateful that it was less than we would have had to pay at the other places, and certainly much less than the ones we saw online. Once we settle in I will send pictures, it is that nice! The other place we saw that day would have worked, but the vibes and energy of the condo were so positive, I felt like this would be a good place to heal.

My parents are coming up from Mexico next week and will take me to Ottawa for my meeting with the oncologist. We will be able to go to the condo the night before and bring a few things to make it “home”.  They’ll be with me for a few days while I go through the initial chemo. This will allow Pete to be with the kids a little longer so they don’t find the transition too stressful having both parents away. At some point Pete’s mom will take over and then Pete will come up to Ottawa. All is sort of up in the air, but it’ll come together eventually!

In other news, I have been able to contact a couple of BMT Ottawa survivors, and the first one sent me a very positive and hopeful account that really helps.  I know I shouldn’t expect something as easy as that, but it means that it is possible.  Now I am at the stage where all I want to do is get on with this thing. Every day that passes brings me closer to getting it started. As Pete pointed out, it is also a step to getting to the other side of the bridge, recovery! Every night I mentally prepare my body to accept the donor cells. My cells have a imaginary welcome party!

Today Jess made another observation that made us laugh. Earlier she noticed that I had prepared a meal with foods we normally would never have in the house. Today I brought home a bucket of KFC (if I explained why, I would sound defensive… so I won’t!). That, she said, plus Pete playing video games (that Skyler got for Christmas) makes us seem “different”.  In a good way. I have to admit, I am being much less food conscious lately, drinking more coffee, eating more Smartfood, succumbing to cravings for O’Henry and Snickers.

Trying not to make every moment a “momentous” one has become normal now. It does not mean I appreciate things less, just that I hinge less drama to them.  I have had to do some preparations, (one was to update a private file I was keeping safe at Megaupload— oops!) but other than that, I feel like the expectation of finishing that book, painting that wall, completing that mosaic is something I can have for the near future. What a great credo for procrastinators!

In other news:  Around 8:30pm there was a flash of light that I first thought  might have been a power surge on a hydro line outside. Then came the rumbling. Unmistakable, yet inexplicable this time of year. When I went to look outside I could see nothing– no lights across the street, no lights of the Kingston skyline… power outage? I ducked my head out the doorway upstairs on the deck and realized the reason I could see no lights is because of heavy fog! Then the lightning came again, and thunder, and I was pelted with icy precipitation. It came closer, then dissipated. This, after a snow squall warning, and the day before freezing rain and heavy winds up to 100kph!  This means one needs to not only dodge broken limbs but also swaths of snow covered ice (I fell twice today– good thing snow offers a soft landing!)

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Slipping and Waiting

Yeseterday I went shopping and decided to shop like someone who really didn’t care too much about food. OK, I bought a head of lettuce, but I also got a can of mandarines, a box of processed frozen fish, instant pudding mix and a prepared microwave meal, the latter recommended as food I should be eating when I am neutropenic.  I asked Jess to make the pudding and as we sat down to dinner she announced: Mom, this food is so… not you. I had to laugh. I have felt a kind of resignation and am suddenly less conscientious about food as my numbers come up. I am feeling sorry for my blood cells that are showing significant improvement. Little do they know they will shortly be wiped out of existence. Poor things.
More waiting, which brings on pendulous bouts of boredom and panic. Boredom leads me to blogs, which then lead to panic. There is a curious (disturbing?) dearth of personal testaments from survivors of bone marrow transplants.  I have learned really quickly to start at the end, to make sure the person actually survived. I got lured into one person’s video blog that ended suddenly and then the next entry was an RIP! Yikes! OK, moving on…
A forum search led me to the only conversation mentioning alternatives that I have come across, and even that was frustrating. Why do people expect miracles from one thing or another? I wish people would stop throwing the word “cure” around. There is a lot of talk that a BMT is a “cure” for MDS and other bone marrow diseases, but the simple fact is that it isn’t. A patient’s chances are increased, but the disease can also come back for some. There were people claiming that a particular diet or lifestyle change can “cure”.  Though we can manage certain aspects, we really can’t control our health, no matter how well we eat, how much exercise or how many supplements we are taking. There are just so many variables out of our control– the environment especially, outside and inside. It makes stories of healthy people getting ill so inexplicable because we tend to look at the obvious sources. And then there’s just plain fate! It was in this frame of mind yesterday that I wrote a brilliant response to such entries on the marrow forums about nutrition and bone marrow disease. No one was really addressing the issue to my satisfaction anyway, which was basically that NO ONE can guarantee a cure, and if you think macrobiotics or veganism or a super supplement can, you are being naive. Then as I hit post, it disappeared and I was informed I had not logged in WHICH I HAD. So I was deflated by that and kicking myself for not previously saving it first. A brilliant rebuttal, lost to the etherworld.
I did find a very detailed play by play of a survivor (at least as far as her last blog which was a few weeks ago) who I discovered is a nurse. I appreciated her meticulousness in reporting every single drug she was given and how it affected her. So many highs and lows, triumphs and pitfalls, even into her second year post transplant. Through much of it she complained of serious GI problems and it wasn’t until months of suffering through more drugs and tests that she went to a specialist who suggested she change her diet (no dairy or gluten). Nowhere did anyone think to suggest probiotics or other supplements to repair her battered intestinal tract, beaten down by, as she herself acknowledged, excessive use of antibiotics. This is a nurse!  And worse, no one she encountered at her treatment center offered any such suggestion. Baffled by this ignorance, I did a quick search and came up with two TWO! references to probiotics and chemo. One was a helpful hint from Livestrong that yes, it can help but check with your doctor first as it can actually complicate the bacterial functions in the gut. The other reference was to a 2 year old case study and a couple of critiques to it about use of probiotics to “manage chemo induced diarrhea”.  I brought this concept up pretty early in my meetings in Ottawa when I made it clear I would pursue alternatives to manage side effects and was pleased to hear that it was an acceptable consideration. I know this is the kind of care that requires heavy drug treatment, but there must also be ways to protect organ damage without using other drugs that cause organ damage.
Now I am off to have some coveted mother-daughter time. Trying to keep things real and not upset the routine. So far, so good.

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.

The New Year

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