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!


3 thoughts on “The Disease of the Year?

  1. There was a rainbow in the sky last night as I was driving home around 8:45. I’ve never seen such a beautiful night sky. Dark clouds on one side and gorgeous sunlight high on the tree line, and then a rainbow! It was fantastic. I had a hard time focussing on my driving as you can imagine.


  2. Hey there
    Zo and I were driving back from Toronto when that same double rainbow appeared right in front of us on the 401. We drove towards it the whole way to Kingston.
    I knew it was over your house!!!
    The lower part of the main rainbow was lit up like it was on fire.

  3. Nora Ephron was the best Romantic Comedy writer/director ever. Meg Ryan’s fake orgasm in the restaurant, and Billy Crystal’s outrageous sexual conquests (“You made a woman meow?”) are two of the countless scenes that make When Harry Met Sally the most memorable comedy. Another Ephron line I love is from You’ve Got Mail. Tom Hanks’ comment about his tightly wound current partner, “She makes coffee nervous.” That and the Starbucks editorial comment on decision making! Nora Ephron was the Jane Austin of the 20/21st Century.

    Tucked away in my cocoon in Thailand, I had not heard of her death. I am sad that we will not have another Nora Ephron movie to look forward to, but Lory and I have many Ephrons in our DVD collection. She has achieved immortality.

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