Hello Everyone:
How quickly summer seems to be zipping by with stores already displaying their Fall clothing and of course, a lot of “Back to School” advertising, which in the U.S., starts earlier than in Ontario.
It’s been quite a busy time for Gary and I. From the time that I started with my treatments last October, the one key element with my blood work was that my platelet count (for clotting ability) has always been consistently well within the acceptable range. This was very important as we discovered that while the red and white cell counts would fluctuate, there is a booster shot available which puts the body into overdrive, countering the chemo’s effect of slowing the body’s ability to produce either or at times both of these. For the platelet count, there is no booster shot. The only solution is to take a break from the chemo, naturally allowing the body to recover, or in extreme situations, a blood transfusion, which for chemo treatments would not be practical.
The side effects from the new drugs seemed fewer and with less impact, but we then found out when we showed up for Round 3, that how I felt physically, clearly did not represent what my bloodwork would show. From Round 1 when my platelets were fine, we discovered that in Round 2, my platelet count had reduced by 50% but it was still just within acceptable range for me to receive a slightly reduced dosage. When we showed up last Tuesday for Round 3, the platelet count had now reduced to below the acceptable range so I was not able to receive my treatment. Clearly, the impact on my platelets is the result of the new drugs. I am headed in tomorrow and am optimistic that my body has been able to restore the platelet count to a level where I will be able to receive my deferred treatment. When I checked in with Dr. I regarding how this would impact my future schedule of treatments, I was told that my “missed treatment” week would be treated as a recovery week. That means I will only have one additional week of recovery after the next treatment, thus keeping to my current schedule. We’re fortunate that it should not impact our planned week at a coastal resort near San Diego before starting the next cycle.
Since I am supposed to stay on the new regimen for at least two cycles, I am wondering whether the same pattern is likely to occur. Should this be the case, then our intended visit to Toronto in September may have to be cut short. Under normal circumstances, I might have postponed the trip but I do need to have another CT Scan and I am also awaiting confirmation of an appointment with a Toronto oncologist who we are hoping will be able to take over my file when I transition back to Canada for my treatments.
During Round 2, Dave Roy was able to update me on a lot of his activities. His roots are on the east coast of Maine and he has been flying there for the last few recovery periods to have a number of family reunions. Since Dave’s philanthropic client/friend wants to make a fairly sizeable donation towards pancreatic cancer research (this may be donation #2), Dave has continued exploring which protocols/research appear to be the best options. As a result of this, Dave came across a Dr. Palucka, who worked for many years with a Dr. Steinman(?) on an immunotherapy protocol utilizing the patient’s own dendritic cells. Dendritic cells regulate our immune systems. Dr. Steinman received the Nobel Peace Prize for his research with dendritic cells. Ironically, soon after receiving the Nobel prize, Dr. Steinman was diagnosed with pancreatic cancer and Dr. Palucka used this immunotherapy on Dr. Steinman and extended his life by 5 years. Between then and now, Dr. Palucka has made a number of improvements and is now ready to have the first round of clinical trials in October. Dave is confident that he will be included in the small trial of 20 participants and suggested that I solicit cousin Pat’s assistance and try to get in on this trial. The good thing is that our chemo treatments would still be able to continue while on this trial, which is not the case with most of the trials. Cousin Pat has offered to meet with Dr. Palucka and so I am excitedly waiting to get his feedback on what he thinks of the protocol and also whether I will be able to participate.
For Round 3, LJ was accompanied by his daughter, Hannah and son, Sam, whom we had already met. LJ had started regaining a little bit of weight but told me that he still suffered from a bit of nausea. I told him to use ginger to see if that would help and if not, to use the prescribed drug. LJ responded by saying that he loved ginger with sushi and I gave him a horrified expression letting him know that unfortunately, he had to avoid sushi as his immune system would not be able to deal with any unforeseen bacteria from raw fish. He understood but was going to try ginger in all its various formats. We were glad that Hannah and Sam had come since we were not going to be able to keep him company for the afternoon, after my disappointing platelet news. LJ was sad but understood. Ironically, when we arrived to park, we bumped into Michelle, our tall blonde, who had gone in early for her infusion and was leaving. Well, Michelle during Round 2 had come in to advise me that she was not able to receive her treatment due to a low platelet count. She was fine after a week’s break and interestingly enough, she did say that she has had to miss a number of treatments as a result of this. I am hoping that as soon as I am able to revert to my old regimen, this will no longer be an issue.
Since this past week has been a recovery week, Gary and I decided that I needed to slowly start increasing the distance of our walks. My energy level was good and other than a slightly tender lower lip, I was feeling great. We started exploring deeper into our neighbourhood and found it quite interesting. We noticed a similar situation here as in San Diego, where a building is able to occupy almost 90% of the land – something which would not be allowed in Canada without making a case and applying for special permission. The rest of the property is then devoted to some garden with the majority of rental properties having their parking on street level and the garbage/recycling bins all located in alleys. With so much of the property going to the physical structure, there are alleyways designed specifically for access to the bins. What is quite noticeable is that there is clearly respect for this layout as all alleyways are extremely clean and tidy.
With our low tolerance of the extensive TV advertising and the unappealing summer/weekend programming, Gary and I started viewing some of the old Masterpiece Theatre/BBC Productions. Many of these have been lent to us courtesy of a good friend. We have just completed the Poldark series which Gary had not seen and which I was happy to view again. Needless to say, with the Cornish accents, I had to interpret some of the dialogue. Nonetheless, the beauty of the untouched coastline remains impressive.
I am so elated that Gary has been able to locate a long lost friend whom I have not been in touch with for close to 30 years. How incredible to think that through the power of the internet, he has been able to do this so efficiently. Having just written this, it occurs to me how easy it would be for someone without good intentions to do exactly the same thing and just how sensitive we have to be with the amount of personal information we make available in the public domain.
We leave you with the following quote:
“When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile.”
– Unknown
Enjoy the remaining weeks of summer. We send you are warmest wishes from the west coast accompanied always by our deep appreciation for all your unconditional support, love and prayers. Gary and I are truly blessed!
Maureen and Gary