The Disease of the Year?

Greetings, Happy Canada Day and Happy Summer to all!  I see that other parts of the continent are suffering from extreme weather, but in our little neck of the woods it has been absolutely perfect. Something about this part of Ontario, even though we are surrounded by heavy rains, tornadoes and heat waves, protects us from such elemental calamities. This weekend was a good test of how I can manage in full sun– the gazebo is screened and offers great protection and cool breezes from the lake, there are shades on the patio that one needs to follow as the sun moves, and if it is not too wavy, I love the comfort and shade of the docked motor boat so I can supervise the kids dive bombing off the dock. I long to jump in with them, but alas such antics remain taboo for me this year as there are bacteria lurking in lake water that can find any number of entry points into my body.

I was saving this blog for the following week, after my Hickman was to be removed. But recent news events have prompted me again to post this now.  As you may have heard, we lost a prolific female Hollywood director/writer, Nora Ephron. Who didn’t love When Harry Met Sally? She is known for other works as well, and wore many other hats in that entertainment field. You may have also heard about Ms Ephron’s cause of death, attributed to leukemia. What is not as commonly known is that her leukemia was preceded by MDS, as reported by AAMDS.  The New York Times added some more detail but didn’t really put much emphasis on the blood disorder that she suffered from, which is unfortunate as it doesn’t draw as much attention to it as it could have. However, the report was fortunate to have the executive director of AAMDS explain the difference between Nora Ephron’s MDS and that of Robin Roberts (reported in previous blog). In Roberts’ case, it was determined that her MDS was caused by chemo treatments for breast cancer five years ago. In Ephron’s, it was a development that was so complicated it restricted certain treatments, namely a bone marrow transplant, and that in fact it was her damaged immune system that made her vulnerable to pneumonia that ultimately led to her death. This is indicative of how complex bone marrow diseases can be, and how important it is to learn more about them and draw attention to them for funding and research.  What I was hoping might result from Robin Roberts’ case has in fact happened, and that is that since she announced her predicament, additions to the bone marrow registry at Be the Match spiked significantly!  And while I have your attention, I should mention that the Canadian marrow registry One Match is asking for specific donations to support their pool for “ethnic males 17-35”. If you or someone you know fits this category, I strongly encourage you to go to the website to find out how to help.

As for me, my greatest success has been the end of Tacrolimus, the anti-rejection drug (second week). Does this mean I can put grapefruit back in my diet? I miss it so much!! Even in reduced strength, Tacro had been creating some kind of havoc on my digestive system, and even now on occasion I have a bout that takes me to the bathroom or omnipresent bucket in a flash. I would say such an event happens every 7-10 days, usually because I have not been paying close enough attention. In fact, I have been a little cavalier about what I put in my body these days, preferring gustatory satisfaction over nutrition. I am still underweight, so I don’t see much harm in this, and I have begun to tone up my body with weekly yoga (I know, it’s not enough, but it’s something!) and three times a week I put on some tunes to motivate me to work with my free weights. So some progress is being made. I continue to take magnesium and potassium and have added vitamin C to my regimen. Next week I will be losing my Hickman at last! Apparently it is not as simple a procedure as I thought, as it took some time to get it organized with surgeons at another clinic on the Ottawa hospital campus. It requires an overnight in Ottawa, however, as it is scheduled for 8:30am, the latest possible time.  My regular clinic appointment is the day before, later in the afternoon, so the scheduling is about as convenient as it could be, otherwise we might have had to make two trips to Ottawa. But it does mean an overnight, and we don’t know enough people in the area to make this easy for us. We have a tip or two but if they don’t pan out, then a hotel it will be.

Yay, the end of Tacro! Grapefruit, anyone? (NB: Not wishing to further patronize the pharmacy that was poisoning me, and to save money, we discovered the advantage of the COSTCO pharmacy in Kingston.)

Just for fun, a fabulous double rainbow over our house last week, reminding us how blessed we are!

In the News

A few things have prompted me to add a post here, even though there is not much new to report on what is going on with me (more on that later).

As you may have heard, Robin Roberts, news anchor from ABC’s Good Morning America, recently disclosed her diagnosis of MDS and her ultimate path to a bone marrow transplant, for which her sister is a virtual match. The Aplastic Anemia and MDS Foundation in the US  has responded promptly (as did I on Robin’s Twitter last night) to offer support and information. Robin was clearly quite emotional as she faced the camera, supported by her colleagues. She is lucky to have found a donor so quickly, since this can be a challenge for non-caucasians. As a result of her plight, many people have already responded by pledging to join One Match and Be the Match. This in itself is fabulous, and the fact that Robin is a high profile celebrity will bring more attention to this disease, something that we can, in a twisted irony, be thankful for. In my research, I discovered that other famous names that succumbed to MDS were Carl Sagan, Susan Sontag, Roald Dahl and Michael Brecker, among others.  Since then, there have been leaps and bounds in the fight against this disease, as I am fortunate enough to attest, for only a couple of decades ago I would not have been so lucky. But it is still very uncommon and takes a back seat to other diseases like cancer.

What I found interesting is the almost certainty that Robin’s disease is attributed to her chemotherapy for cancer treatment five years ago.  As far as I know, the only definitive cause of MDS is exposure to benzene. Blaming chemo is quite a leap, though I wouldn’t be surprised, as it does a number on the body and can lay latent until the right trigger comes along. What is also curious to me is that Robin actually made the average “life expectancy” of cancer treatment, only to succumb to something even worse. I hope that Robin is able to document, as much as she comfortably can, her journey to teach others as this disease gains more prominence and ultimately more funding. She has a lot of support and a great attitude, and I wish her all the best in her recovery.

Next I would like to do a “shout out” about a special event tomorrow, June 14, which is World Blood Donor Day! The WHO’s website declares “Every blood donor is a hero”. If you haven’t yet, please consider donating blood and/or  go to OneMatch to see how easy it is to join the bone marrow registry.

Now back to me. On Monday, during an unusual heatwave of up to 40 degrees with humidity, we drove to Ottawa for one of my tri-weekly visits to clinic. Last fall the car’s A/C blew out, so it was a particularly challenging ride for me, especially as I was in the sun both ways and on the last leg home had to climb into the back seat to avoid the blazing sun.  We came away from Ottawa knowing this:

* my numbers are awesome and responding well to the drop in Tacro

* after two more weeks of 0.5mg per day of Tacro, I will stop it altogether! Then we have to watch for symptoms of GVHD which most commonly manifests as skin rashes.

* since the next visit happens to fall on a holiday and it takes some time to organize any medical procedures, it has been decided that we can wait four weeks till my next visit so that I can have my Hickman removed! Apparently it requires minor surgery.

* I can slowly start driving again, short distances first, then later I can drive into town, but not long stretches. This takes enormous pressure off of Pete who has been my chauffeur for months.

* my eyesight seems to be deteriorating of late, making even this blog difficult to read as I type. It is recommended not to get eyes checked until six months, because they could change again, so I have a couple of more months to wait. Concerns are cataracts that commonly occur after treatment.

The changes I don’t notice in me are certainly noticed by others, I suppose just as a new mother notices the rapid growth of her baby after a few days’ absence and not as much on a day to day basis. The kids claim that my hair is coming back and I think they are right, though it is more fuzz than anything else. Others have noticed how I am pretty much back to normal in terms of energy and temperament and that I am looking good, so I appreciate the flattery! I have noticed my energy levels last longer, though too much walking or standing around can still cause exhaustion. I no longer see as many ribs as before yet my weight actually dropped a bit according to the scale at the clinic. I even allowed some flowers that broke off during the gardening weekend to come into the house because they were so beautiful I couldn’t resist. And today my hands made contact with some black earth as I tried to finish topping up a planter. Gasp! I think as time goes by and I am gradually feeling better, we have become a mite complacent. I am still careful to wash hands and use sanitizer when shopping or away from home. But I tend to eat what I want, even if it is not what I would normally eat (aka junk food) because I am more interested in gaining weight and feeling satisfied when I eat. This also means we are eating less organic and are being a little less green in our daily habits. I suppose I attribute it to the fact that I am dealing with more important things right now.  Later, when I can re-channel my energy, I believe I will go back to that more “virtuous” path. But for now we go on a day by day basis. No more occasional morning nausea/vomiting is a cause for celebration, a victory that I believe came from the drop in Tacrolimus. One last thing about that: it was not until a few weeks ago that someone brought up a very relevant and useful suggestion that could have dealt with the nausea and vomiting I had been experiencing earlier, and that was marijuana. It shocked me a little that at no time did anyone make this suggestion at the clinic, nor is it written in any of the official literature or handouts, yet hospitals and doctors are in agreement that this is something that can very definitely help patients. Maybe my symptoms weren’t severe enough. It reminds me of a conversation I had with a woman recently who said she had been battling low blood counts for years, but because they are marginal and not (yet) life threatening, she is not able to get a timely appointment with a hematologist. This is such backward thinking, to not put the focus on preventative medicine.

Next blog will probably be in July. Summer, yeah!

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.

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!

With a Little Help From My Friends

I can’t imagine someone who is ill and is looking at a long recovery who doesn’t have a support system. Such a system is created for these unfortunate few, the elderly, the homeless, the destitute, by private and public services provided by caretakers and hospital staff. I’ve seen such people, and it breaks my heart. I wonder about the circumstances that they don’t have family or friends to help support them. There are buses that shuttle patients to and fro for treatments, nurses who do home care for a few hours a day. But not everyone has family or friends to help when help is needed. For this reason I count myself to be particularly fortunate because I have the support I need coming from so many directions: friends, family and even strangers, as well as a crack medical team.

I would like to thank some of these people now for their kindness and caring:

* the Wolfe Island community and especially Kayo for organizing bi-weekly meals for our family to relieve Pete’s already heavy burden as professional consultant/PhD student/house husband

* my fabulous and stylish neighbours, even in robes on an early Saturday morning, for letting me know I can call on them for anything

* my other fabulous neighbours whose generosity seems to have no bounds– yesterday I received as a gift a longed for SPF shirt all the way from Japan!

* our musician extraordinaire who has loaned me Willie Nelson’s magical healing hat (see picture below of me soaking up Willie’s vibes)

* other friends who drop off, drop by, rescue stolen bicycles, watch the kids when we are away at an appointment

* supportive emails from people I barely, if at all, know, as well as from those we know well and are thousands of miles away

* family that are able to help us financially as Pete struggles to find work through this period

All of these things help to make my road to health easier, and family logistics smoother.

Thank you, thank you, thank you!

Better Days

As the days coast by, I realize I am slowly, and I hope surely, getting stronger.  I was still struggling with food, and getting quite despondent, when suddenly something happened. Either the Tacro miraculously found its equilibrium, my body had excreted a substantial amount of toxins with the extra hydration or the vitamin D and fish oil kick started things. I decided I wasn’t going to wait anymore for a professional to tell me whether or not those supplements were OK. Besides, I am a professional myself! And the head pharmacist on my team (not involved in the Tacro fiasco) was straight with me months ago when he said then, later, but not yet. So now is later, and I can feel my body starving for oils and getting hormones balanced again. My skin especially, as it is beginning to peel from the irradiation I had months ago. It looks horrid. I assume they will approve the D vitamin anyway since I am to stay out of the sun for a year, so I had no qualms with that. I am also taking probiotics to kick my gut back into shape, and I’m not embarrassed to say, as a new mom would of their newborn, that I had my first real BM yesterday and it continues today. So something has shifted, indeed. My appetite is getting better, though some foods still taste about 60-70% normal, while others are just fine. I can now add shrimp to that list, and beef, and granola bars! What this means is that my spirits and energy are UP!

Yesterday, the whole family ventured into town. We had to go late in the afternoon because I was getting two infusions at once, saline and magnesium, and they required four hours in total. Once the Mg was done, I strapped the portable pump to my waist (remember those fanny packs?) and off we went. I was on the hunt for SPF or sun protection clothing without having to order from the US or Australia, and there was a rumor a store in Kingston carried some. When I called that morning to find out, however, I discovered a private home with a frustrated owner who would prefer not to receive ten calls a day about this business that apparently went under and didn’t take their number with them. So my next options are Ottawa and Brockville, which we will go for on Tuesday.  This left us with only two errands, getting bigger clothes for Skyler who is having a growth spurt, and redeeming his gift card from ToysRUs. We had success in both areas; I picked up a wide brimmed visor for $2 and a wide brimmed flowered hat for $3, plus a pair of slip on shoes which I love because I hate fussing getting my feet into shoes. Even though the store was pretty crowded (it was Saturday, after all) I didn’t feel endangered in any way and constantly used my portable sanitizer.

By now we were hungry, so we headed to our favorite hole in the wall, the Wok In, because I had my heart set on #4: Vietnamese rice noodles with delicious sauce and spring rolls that Jessie and I would share.

Somehow we ended up with an extra dish that became my lunch today, once Pete removed the hot sauce, and I am proud to report that I had a load of rice and three whole shrimp! This doesn’t sound like much, but for me it is a triumph as I could not tolerate shrimp a few weeks ago. Fabulous as the food is at the Wok In, it is slow, run by a mom and pop who are constantly on the move and fussing over the hot stoves and fresh ingredients. As usual we judged how long things would take in relation to the ferry schedule. We arrived at 5pm (the ferry leaves at 6), but everyone knows you need more than an hour there, yet somehow the take outs always get priority… Then Jessie piped up, hey, it’s Saturday! We don’t need to rush! So we all agreed with her wisdom which Pete and I felt should be rewarded with some White Mountain Ice Cream on the way home. We all had tiny amounts, but even so, I was able to happily eat all of mine! Go, calories, whatever you are!

I should mention that as of yet, we have not heard a peep from the pharmacy in Ottawa, which is distressing and disappointing. Pete wrote a letter to the head, explaining the trials I had gone through because of their error, which includes the daily magnesium and potassium infusions to combat fatigue and nausea. Trials that not only affected me physically but also mentally and emotionally. Ever since hearing this was to be my “honeymoon period”, I’ve been waiting for things to get easier, and it’s taken this long to get even close. How many weeks of recovery have been wasted? He also pointed out that others have suggested a law suit, which we will not threaten but did mention.  Mostly we would like some kind of response, some compassion, perhaps asking how I am doing now, or if there is anything they can do to make things better for me, or if there is some possibility of us helping them develop a better policy to avoid such future mistakes.  But we’ve heard nothing at all. If this has happened before, were any changes made or was it ignored? Who knows? Something has to change before someone else gets hurt. So we got fed up and faxed the clinic yesterday. We’ll see what develops.

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