A Few More Things

Pete arrived today; that meant he said goodbye to the kids, which makes me sad, thinking of them going through that again. Since then I’ve been learning how to text words and images with Jess on her iPod! I am still a novice (read: e-idiot who can’t figure out where transmtitted photos taken on my iPad go) and need more time to master the Apple family. But here is one fellow who lives IT and says it saved his life. I have been following Amit Gupta since I came across his Facebook page. He is about 10 days ahead of me with his bone marrow transplant, so I am closely following his progress.  So far so good. Go, Gupta!

I realize I posted yesterday’s blog a little prematurely (waiting on those photos that never came) and neglected to proofread. I meant to add the link to the energy book I mentioned. The author has written a few of these types of books, and there are plenty out there, but something about this one drew me in. This is where I liked the idea of directing love and energy to your cells and organs.

I’ve noticed feeling a little on the edge of nausea yesterday and today. This considering I am already downing plenty of meds to avoid this. I have been provided with “extra” in case the ones I’m taking aren’t working. I am so loathe to bombard my body with anything else, but someone explained it this way: it is short term, and OK if it makes you feel better, ’cause soon you’re gonna feel pretty bad.

Today we were able to attend the monthly AA/MDS support group here on the BMT floor. At the meeting was a variety of people at various ends of the blood marrow disorder scale. It was great to meet and share with others like me, though I felt more seasoned than the first time I attended one of these at Wellspring in Toronto, several years ago.

Tomorrow is my last chemo day, so I feel progress is being made, even if my WBC are not as low as I’d expected– they seem low normal where I’ve already been for ages. My RBC transfusion certainly made a difference in energy but I am worried about my platelets, dropped now to 32. I suspect a bag of those babies is in my near future. I’ve been asked to start doing the saline washes for my mouth as brushing like normal can lead to bleeding and that leads to bacterial infection. Not much has been said about oral hygiene, other than that.  With that in mind, I hope whatever is being contained next door at CHEO stays out! I got lost today on the BMT ward during a bathroom break and found myself walking the halls past rooms and halls full of so many sick sick sick people. I realize it takes a very special person to take on this kind of career, someone extremely caring and patient. The demands on nurses and volunteers is enormous. I found out that Ottawa Hospital has an almost 1:1 ratio of volunteers to patients. It is one of the few institutions I’ve seen that matches its vision statement, and the people we’ve met so far are clearly proud of their association with it.


One Day at a Time

As the days pass, I get stronger and hungrier. Once in a while I have an inexplicable set back and the day is lost on the couch or in front of the tv. Lately I’ve been able to get out more and have had 3 recent outings with friends, all of whom were nervous at first, wondering if I might pick up something lingering amongst them, but so far no one I’ve met has been sick, and I’ve been really careful. Plus I have Pete as my shadow, reminding me to stay away from the buffets.

It also means we’ve been frequenting the Wok In more often and I am happy to say that my taste buds are as close to 100% as they’ve been in months. Occasionally something will pass my palate that will register in the “gack” zone, but overall it has been a delight to indulge in just about anything I want! The other day I was making appetizers with smoked salmon which no one was able to determine was OK or not for me, so I had a tiny bit and then avoided the rest,  a shame because smoked salmon on cream cheese with a slice of cucumber on a cracker is… right up there with wine from which I must also abstain for several more months.

Speaking of resisting, which is entirely mental, I wanted to mention that I am traditionally a nail biter. This, for someone with a fragile immune system, is a definite no no. Hands away from the face, germ vectors! So I have been very vigilant about this and now have the  greatest nails– not that my nails are great anyway. I have noticed a phenomenon I’ve read about from cancer patients, wherein their nails record the moment of the body’s trauma from chemo with a ridge. I suppose I can use this as a marker… three months after the first chemo and they are about where the moons are. As they grow out, this will be a sign of progress.

I have not been vigilant about recording the drugs I am taking during this “honeymoon period” so I will list them here:

in the am:

* 100 mg liquid magnesium (and an additional 100 mg, if we remember, at mid day)

* Pantaloc 40 mg

* Acyclovir 800 mg

* Tacro 0.5mg

* potassium capsules 1200 mg

* fish oil 750 mg

in the pm:

* 100 mg liquid magnesium

* Tacro 0.5 mg

* Acyclovir 800 mg

* Fluconazole 400 mg

On Mondays and Thursdays I take an additional antibiotic, Septra (among many other names), 160 mg twice a day

This recipe seems to work for me as all my numbers, ever the measure of physicians’ success, are perfect. Occasionally I balk in the mornings at breakfast, which used to be my best time of day, so I take an anti-nausea pill– I started with Maxoran but it lost its effect so now when I feel I need something I go to Stemetil which is faster acting. This way I will be able to chow down on salmon, bacon, chili, home made potato salad and chicken wings, Thai food (mild!), pasta and mooseballs (tonight’s evening delivery from the neighbours).

It was decided at our last Ottawa visit that I would probably get by with not only fewer saline drips, but also longer times between visits. By a scheduling coincidence, our last visit had to be 10 days apart. From this point on, we only need to check in to Ottawa clinic every other week! I feel like I’ve graduated! I am also aware that my 100th day is coming up soon (May 27th) because this is the point when I will be even more on my own as I wean off the Tacro completely. Probably once a day, once every two days, and so on.  This is the period when any number or intensity of side effects can occur from graft vs host disease. I’m told that any side effects experienced in the first 100 days is considered “acute” and usually involve the skin. My skin has been peeling like crazy, especially the soles of my feet, but we attributed that to the radiation effects.  No biggie. After the first 100 days, symptoms MAY occur, and possibly several months after the transplant, and can include problems with joints, eyes, intestinal tract, mouth, liver and glands. Instead of being paranoid about what might happen after the 100 days, I think I will just carry on (I was robbed a month anyway, so this I am owed!) and enjoy the food and company and energy that keeps on coming.

Here is a picture of me in Willie’s hat (yes, it really did belong to him) and my red silk scarf. Fashionable sun protection! NB: For alert observers, you may have noticed I am wearing a Mockingjay Pin! I borrowed it from Jessie when I was wearing a splendid jacket that I got for $20, down from $109 (!) at a store that sold sun protection clothing. This isn’t what I had in mind, but how could I resist? It’s timeless, and I was like Cinderella, the only customer that it fit! Later I will model the SPF clothes I finally got my hands on.

PS: As you may remember, I have been following Amit Gupta’s progress on Facebook as he is about a month ahead of me. It is great to see him doing so well. He is most excited about going to a large movie theater to see The Avengers, which is funny, because I told Skyler yesterday that in a month or so when the crowd died down a bit we’d all go together!

Over the Hump?

Where to start? This blog took a siesta while I was stuck back in the In Patient wing of 5 West. I felt crappier than usual, my throat  hurt to swallow, I was exhausted and sleeping constantly, waking every few hours from fantastical to maudlin dreams, then back to sleep again.  All this time I was being monitored, so the feeling of safety was there and it was good. It also meant unless we were prepared and had food handy, I had to rely on hospital “food”. I can’t tell you how many times I was given “high fibre” cereals for breakfast. Think about it: everyone on this ward is neutropenic;  being on immune suppressing drugs, we are all suffering from poor bowel movements. And don’t even get me started on the salads– briefly, any “natural” food from handling to serving can come into contact with bacteria, which would be Bad. I mentioned this to the dieticians and they wondered too, about both this and the high fibre cereals, and both agreed these were good questions. Then they pushed more Ensure and Carnation Instant Breakfast. I was told a few times if the diarrhea doesn’t improve and I can’t keep food down (due to so many drugs causing nasuea) they would have to keep me here. It was a hard battle. One day I had what I call a “dud” nurse– no disrespect, she did her job but didn’t keep me up on the antinausea pills and really wasn’t at all that personable, certainly an anomoly. She told me mid-day if I promised to eat something at home and drink more fluids, and if my pain was manageable, which by now it was, I could go home.  Yes please. I started to pack up and she got the papers going, got permission from the head nurse, and I got out of there as fast as possible.  It felt like a self perpetuating system of sabotage to me– bad food and too many drugs are bound to keep you in longer.

But the nurse I had today was AWESOME. She was thorough, perky, but not too much, knew of Wolfe Island because of the Kraft Hockeyville we competed in together last year (and for which we won a freezer and shelter for our new ice rink), asked questions and made recommendations like she was one of my doctors, and pressed for the reduction and ultimate removal of the pain killing patch to reduce my nausea.  Generally speaking, all the nurses are awesome but this one was special. I look forward to seeing her tomorrow!

So now I am out, baby, but before I go on, I should mention the first few days here were honestly a challenge and I slept through most of it or wandered about in a daze and very monotonic, making Pete I’m sure worry and feel quite helpless. We were excited to see the CBCs go up and this was encouraging to all but it was an encouragement I simply could not express. Today is the first day in weeks I haven’t felt like sleeping all day, kept food down (except when I was writing earlier about hospital food– perhaps subliminal?) and actually felt like interacting with others. All respect to Bernie Siegel, author of Love, Medicine and Miracles and how laughter contributes to healing, but when you’re down and out and haven’t got the energy to read a book or listen/watch something, it can be a real drag to get over that hump. So, I lead you to infer, dear reader, if I feel better now because my pain meds have been significantly reduced, I am home and eating what and when I want or because recently a few things have tickled my funnybone.

This is the first thing that made me chuckle this today:  https://mail.google.com/mail/?shva=1#inbox/135e8b6acb1a02dd (sorry, this is an email attachment that is not visible now. Trust me, it was funny. And rather sexy!)

This is the second thing that made me laugh today: http://www.youtube.com/watch?v=3qEd7DJBUqk

The third thing was actually a recount from a Big Bang Theory episode that my doctor and nurse shared after they saw I had been watching ST:TNG. Here is the scene from BBT. I think my reaction was particularly laced because I was surrounded by Trekkies!

Today I got out early, Pete got me a soft toothbrush — no more mouth sores means no more saline rinses.   In other good news, my WBC rose to 2.7!! I expressed joy but a little concern, wondering if those little guys will know when to stop!  Yes, I was assured. Thank you, April! She suggested we get some physio outdoors since it was simply too gorgeous to not enjoy some fresh air. The temperature was well above zero, maybe 12, there were people jogging everywhere by the canal where we had a picnic with fare from the Green Door. The sun, smell of the air, everything elicited a little cry of happiness. Ah, freedom.

For those not familiar, the top images are at the Rideau Canal. This reaches as far as Kingston, and this is why they say it is the longest skating rink in the world, at 202km.  Sad year for skaters this year, I’m afraid. The bottom photo is the mirrored exterior of the Convention Centre. We are in the middle of the second row from the bottom.