Hello Everyone,
We hope that you are all well and are still able to enjoy the last bits of summer which seem for most to be drawing quickly to a close. Here in LA, for the past few weeks, we have had the hottest temperatures so far this summer. We are fortunate that we have a corner-unit apartment and we benefit greatly from a cross-breeze. We have had to change the time of our neighbourhood walks to earlier in the morning when it’s more comfortable. Recently, Gary has started taking his camera with us to photograph all the amazing colour that abounds. We just read somewhere that it only rains around 30 days per year so quite surprising to be able to find so many flowering shrubs, hedges and trees. I’ve attached an example.
Our stay at the ocean in Carlsbad proved to be relaxing and totally invigorating. This was especially appreciated since I only had one week off for recovery compared to my usual two. We arrived back in LA with our first priority to get some internet service established at the apartment. Since we are not keen on signing a long contract, we were able to purchase a small camera-sized unit called a “Hotspot” which provides the internet signal wirelessly for up to five devices. This is perfect for our needs and they offer varying levels of data capacity which you buy per month. Who would have thought that we would become so reliant on the internet!
With my one week off, I was ready to face Round 1 of this cycle – my platelets as well as the red and white cell counts were all fine. The chemo suite was relatively quiet. As Dave Roy had taken off to Maine for his recovery period and had missed his round 3 due to excessive mouth sores, he had scheduled his appointment for the day before. Debbie, LJ’s wife, had emailed to say that he had experienced so many side effects that he was just too weak to receive chemo. Martha, our tennis player, came in for a short infusion as she was still recovering from food poisoning which had plagued her during the last cycle. Martha looked a lot better and came around to give everyone a hug before leaving. Michelle, our tall blonde, was able to keep us company. We were then surprised when Dave Roy showed up since he had been in the day before. For some reason, they had missed giving Dave one of his usual drugs so he came in to have the infusion and at the same time catch up with us. We enjoyed looking at the pictures of all his grandchildren in Maine and drooled when we saw the magnificent Lobster dinner which he organized for them all.
Round 2, just after Labour Day, proved busy at the office as all Monday patients had to be accommodated. Since I don’t always see Dr. I during round 2, Faye, the head chemo nurse, went through all the detailed questions regarding side effects, checked my BP, and then a physical. The bloodwork told us that my white cell count was on the low side so Faye needed to check with Dr. I regarding treatment. We were surprised that my platelet count was totally fine compared to the last cycle as the new regimen of drugs have a major impact on them. Staying on the new regime, we had expected the same pattern to occur. Faye returned to tell us that due to my low white count, they would be giving me a booster shot and that I would not be able to receive my treatment. Gary and I were taken aback by this and showed Faye the equivalent bloodwork chart from the previous cycle – my white count then was marginally lower by 1 or 2 points and yet I had still received a treatment albeit with reduced dosages. Faye consulted with Dr. I. When she returned, we had a few more rounds of the circular argument at which point I diplomatically asked (proposed?) that we consider a reduced dosage treatment followed by a white cell booster. The booster would help to avoid my white cell count dropping too low and as long as my platelets continued to behave, I would be fine for round 3. I was finally cleared for chemo!! The lesson: we have to take the initiative and be on top of our #s.
Our push-back position was important as I wanted to avoid missing out on any treatments, especially as we are working diligently at getting my tumour marker #s back to where they were a few months ago. Also, round 2 is probably the round you don’t want to miss given that you have only had one prior infusion. Missing out on a round 3 may be less impactful on controlling the cancer since you would at least have had 2 rounds of infusions doing their work. The second reason for pushing back is that we are trying to maintain our “3 weeks on – 2 weeks off” schedule as best we can as Gary and I have done some forward planning such as booking flights back to Toronto, booking my CT scans and other medical/dental appointments when we are back. Included in the forward planning for the next number of months are the weddings of my two sons. For these, however, Dr. I and Faye have both indicated that they would work around the specific dates.
Many of you may not be aware of a new drug that has just been developed by a team of researchers at the University of Southampton in England. The new drug, ChiLob 7/4 is part of the immunotherapy approach where a patient’s own immune system is boosted by a drug so that the patient’s own immune system is able to tackle the cancer cells. When the announcement came out, I reached out to a number of you who are either in the UK or continue to have connections there in the hope that someone may have a connection at the university. I also needed to gather information as much information as possible to be able to contact the researchers regarding a clinical trial planned for next year. Thank you to all who were able to assist with this. I have contacted the lead scientist and will advise on any progress.
Regarding Dr. Palucka’s clinical trial in Dallas, TX which also falls into the immunotherapy approach, a conference call has been set up for her to speak to my cousin, Pat. This clinical trial is open to only 20 participants and we remain optimistic that with cousin Pat’s assistance, I will be able to participate in it. The big advantage with this trial is that it does not require the participant to stop receiving his/her present chemotherapy treatments.
Round 3 of this cycle was yesterday. Gary and I were keen to find out what my bloodwork would reveal. My week of side effects was relatively uneventful except that I felt slightly “off” for most of the week. My norm would have been a few days of fatigue with a build-up back to normal levels of energy. Nonetheless, I remain grateful that I am still able to manage the side effects to this minimal level compared to some of my group.
Our meeting with Dr. I was rather funny. He had forgotten that my infusion pump was to be disconnected and when I reminded him I also told him that I had a name for her. He smiled and jokingly asked why it was not a “he”. I retorted that I was already sleeping with one male and that was enough. I told him that her name was Hermione who was a good witch …. before I could finish Dr. I retorted “a good bitch?”. We all had a good laugh as I continued to explain that she was a good witch from the Harry Potter movies so named as she was excellent at working her magic and casting good spells such that I hoped she would do the same for me!
Now to my bloodwork…. my whites were over the moon from the booster, the reds were on the low side and my platelets had plummeted to just below the minimum. Joan was looking after me as Faye had the day off. Fortunately, Dr. I decided on a reduced dosage infusion knowing that I would have time during my recovery period to regenerate. This # was still quite a bit higher than the previous round when I had to miss a week. Dr. I also told me that my tumour marker had reduced and was now close to where I was before it went up — hooray! This was proving to be an exceptional day.
Since it was a Monday, the usual group was not there. We met Brian and Sue – as Gary told them – he’d not forget their names easily as they are the same as his brother and sister. Brian who was receiving his infusion was dozing at first so we chatted with Sue. They’re a very pleasant English couple who have been in LA since 1983. Brian was diagnosed with stomach cancer 5 years ago, had his stomach removed and had done an ablation procedure on the liver to remove some of the lesions. In typical British humour, he joked that Dr. I has kept him alive “4 ½ years past expiry”.
We were pleasantly surprised to see Dave and Nancy Roy. Dave did not have a good week and came in a day ahead to receive some intravenous hydration in preparation for his chemo session today. We introduced him to Brian and Sue as we both find meeting patients with such a long track record and who look well is really such an inspiration for us.
All that I now need to do is get sufficient rest this week to face our flight on the weekend.
Before closing, may we share this beautiful prayer with you:
May the grace of the love of the stars be mine,
May the grace of the love of the winds be mine,
May the grace of the love of the waters be mine,
In the name of the Word of all life.
Amen
We do appreciate deeply all the love, support and friendship we receive so unconditionally from you. As always, all your prayers and positive energies continue to be uplifting.
Maureen and Gary