A Transformation, or How I Spent My 100th Day

This morning I woke up early with full sun and looked out the window and smiled. My peace/herb garden, which had overgrown to postapocolyptic proportions within a few weeks, was now an orderly, clean and fecund space, with elegantly caged tomato plants amidst large tufts of green lemonbalm and oregano.

I had been lamenting, and I admit stressing a little, over the state of my yard and gardens this year. Pete can mow the yard, but the gardens take more care and time and digging. Contact with dirt, even if it’s airborne, was one of the things verboten to me, as soil carries bacteria that may compromise my immune system. I tell you, these things are lurking everywhere! And normally they are good, plentifully inhabiting all healthy soil to provide nutrients to things that grow. It is a fascinating field, studying things in the soil, and extremely important as without healthy soil we would not survive. Literally. But it is not a sexy topic like global warming or seal hunting, so it gets little attention, as is evidenced when trying to do an online search for it.  I kind of feel sorry for the pedologists of the world, especially when they get confused for pedologists who study the developmental characteristics of children. But soil contains organic and inorganic elements whose job it is to decompose, aerate and regulate mineral uptake and bioavailability of things that plants, and ultimately us, need to grow. Soil, it seems, has its own immune system, just like plants and just like us. Creating the imbalance that is the result of industrial pollution and over farming means upsetting some very important immune systems. But I digress! You can learn more in Thomas Polick’s classic The End of Food.

So, yes, this is why even seemingly benevolent bacteria in the soil might harm me, but the thought of not having a nice garden this year depressed me too. Then my friend Vicki came up with a brilliant idea. Why not have a Garden Party, where people come to clean up the garden and do the planting? I could delegate, surveying the land with my sun clothes and wide brimmed hat and wave my hand in consultation and they would follow my instructions as my minions happy workers.  This was a plan hatched in March, and it took some time to get it going, enough that the early spring rains would indiscriminately kickstart the growth of any living thing in the soil; in no time at all the place was covered in weeds.

So yesterday, Sunday May 27, which also happened to be my 100th day of transplant (YAY!), a group of about 15 friends and their kids from both sides of the lake came over in the afternoon to work on the place. There was raking, weed wacking, trimming, planting, clearing, mulching and within a few hours, the transformation was complete. It was magical, and moving, to have this community pitch in thus.  I had been busy earlier in the day preparing sweet and savory treats, along with various liquid refreshments, to keep the troops happy and refreshed, so by the end we were all pretty exhausted. It was a perfect, perhaps too hot day, but a good way to spend a Sunday afternoon.

Sadly, I did not take any before pictures. It would have been depressing. Imagine a shapeless green and brown mass of stuff. But we did take during pictures. Below are images of the event, and its result! Thank you again to all who came. I hope this is something I can do for someone else in the years to come.

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Progressing

It’s been a while, and that’s because things are going well. My numbers are perfect, my liver and kidneys are happy. I need to keep drinking to avoid saline infusions. My appetite is completely back, though I still eat less than normal. I can almost hear my body say: OK, that’s enough for now! I am slowly gaining weight!

My regimen now is a weekly dressing change for the Hickman and starting now, a clinic visit every three weeks. I feel like a child whose parent is letting the leash go a little looser each day. Sunday will be my 100th day and I will be celebrating with some friends who are coming over to clean up and tend to my garden which is sadly neglected and now overrun.  I have dropped down to one potassium instead of two a day, and last visit eliminated the Pantaloc completely. In sudden confusion, I had asked what it was for. Heartburn, they say. Heartburn? I’ve never had heartburn in my life. OK then, let’s drop it. Why I’d been taking it at all is a mystery. Perhaps “at the time it seemed the logical thing to do”… Starting in two weeks I am to halve the Tacro down to half a gram a day as I start weaning off it and let my new immune system take over. This is a bit daunting, like taking away a crutch, but it wouldn’t happen if I wasn’t ready.

There has been slow progress on the pharmacy front; paperwork has been filed and signed. Time will tell what will come of it. All I know is Pete won’t give up. We’ve come to learn that simply by not acknowledging a mistake, a company avoids culpability. Head in the sand, so to speak. I know this kind of mistake happens a lot, tens of thousands of times in Canada alone, and most people get tired of pursuing it.

We made a major investment that is making a difference especially for Pete, and that is a Vitamix! This blender has been around since the late 30’s and has been very successful. We were convinced after talking to a friend of Pete’s who has used it over 30 years making his own peanut butter, ice cream and soups! It certainly is versatile. For us, its main feature is that is pulverizes fruits and veggies into smoothies, giving us unadulterated nutritional goodness. Got some fruit on the edge? Trim it and pop it in the blender. Want to perk up your garden? Blend some compost together into a juice and pour it on the soil. But I have to say, making ice cream was what tipped the scales for me!

Before I go, I wanted to show a curious feature that I share with some other chemo patients, and that I mentioned in the previous blog, and that is a delineation of the nails. It is literally a marker indicating when the chemo was administered, and the body’s reaction of shock. As they grow out, I see the progress of my healing, I can begin detoxing now so I will indulge in more greens, some far infra red treatments and specific foods.

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!