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!

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5 Comments (+add yours?)

  1. Robert Graham
    May 06, 2012 @ 13:26:03

    As a fellow nail biter… well done! Thanks for the post! Love to you all!

    Reply

  2. Kathy Boyd
    May 07, 2012 @ 11:08:33

    Good to hear an update! I’m so excited that we may see you next week. You are amazing! You’re in my thoughts and prayers.

    Reply

  3. amanda
    May 09, 2012 @ 22:47:08

    Hey Sus, from a fellow nail biter, congratulations on your new nails!! xo

    Reply

  4. Norm Flach
    May 10, 2012 @ 03:46:13

    Great news, Sus! Your blog makes us all appreciate our blessings and wish you continued progress in enjoying more and more of life’s pleasures.

    Reply

  5. Wendy Salvador
    May 18, 2012 @ 08:57:39

    We are so happy to hear of your tremendous progress! Love the nail-biting vingnette!

    Reply

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