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!