Hello Everyone:
We hope that you are all now well on your way to a decent spring as the majority of the northern hemisphere seems to have had such a long winter. We greet you from Phoenix where we are experiencing unseasonably high temperatures for this time of year with today expecting to reach 100F! Fortunately, being in the desert, this is a dry heat and therefore quite a bit more tolerable as long as you’re not in the direct sun for any length of time. The heat does force us to slow down, which is a good thing. The desert is an absolute riot of colours right now with oleanders, cacti and palo verde trees in full bloom. The birds are nesting in a dense olive tree in the back and the many different and interesting sounds make us wonder whether these are calls for a mate or whether the male is singing to the female as she sits on the eggs right now. The mornings and evenings are an absolute delight. We had dinner on the patio last night and as darkness set in, we were able to see Jupiter in the sky and Sirius winking at us as we finished up a beautiful day in the desert.
Just before heading into Session 2 of my treatment, I received a call from my Canadian GP. My initial thought was that the comprehensive bloodwork he had requisitioned back at Easter might have raised a few issues. He immediately started by saying that all was fine and that he was calling on a personal basis to see if I would be able to send him information regarding my treatment protocol as one of his friends and colleagues had just been diagnosed with pancreatic cancer as well. When I went in to see my GP to have the bloodwork requisitioned as well as some prescriptions written up, he was amazed at how well I looked. This request does, nonetheless, reaffirm that we are lagging in Canada in treatment especially for this type of cancer.
When we arrived at Dr. I’s, Sony the shi-tsu had clearly been playing in the Reception area having left numerous of his toys lying around. As my appointment is usually the first one after lunch, I was surprised to find that Dr. I was still with a patient. This continued for another 45 minutes, which was quite unusual and we could tell that Fay, the head chemo nurse, was getting a little distressed by this as the Reception area had filled up and she was clearly thinking about the backlog for the rest of the afternoon especially as Joan, the other chemo nurse, starts early in the morning and leaves at 2.30 p.m. Needless to say, by the time I saw Dr. I, I tried not to take too much of his time other than to mention to him that my cousin Pat had asked if I would be able to retrieve the three CT Scans he had on file. Dr. I was fine with this and mentioned that he was planning to review the latest scan in the afternoon and would let me have them all afterwards.
When we got to the chemo suite, we met a new patient, Brent, and his wife Lily. Brent had just been referred to Dr. I through their “patient advocate” who advised them that Dr. I was not the typical oncologist. Not really sure what a patient advocate actually is, so will have to research this. Brent had had surgery for esophogeal cancer and seemed extremely weak. Both Gary and I felt that he looked the weakest of all of Dr. I’s patients whom we have so far met. We did learn that Brent had lost almost 100 lbs already. Brent was nodding off and slept through most of his treatment and Lily told us that they had been flying to Texas from LA as Brent had participated in some clinical trials. This, needless, to say was extremely tough on them both and so they were relieved to have found Dr. I.
Soon after, Marie and Rick from Vegas joined us. Marie usually has a later appointment so she, too, had been delayed. Halfway through the session, Lindsay whom we had not met before, joined us in the suite. She usually uses one of the private rooms when she’s in so it was nice that she decided to have a change and join us for part of her treatment. Lindsay is a semi-retired lawyer who had built her own practie and was now in the process of passing the reins to her daughter. Lindsay was clearly local to LA and had signed up for quite a few of the support programs available to cancer patients. She asked us what support programs we all participated in. We all started to laugh and almost in unison, told her that “we” were our own support group! Up until then, I had not really thought about it and in fact, our response, was quite accurate. One program which Lindsay highly recommended is a week long program conducted by The Optimum Health Institute in San Diego – cursory research does indicate an interesting program and something which I will give further thought to.
Before leaving, Dr. I called me in and mentioned that the latest CT Scan showed further shrinkage of the tumour in line with the reductions in the tumour marker blood test. Whilst he was not able to specify in percentage terms the reduction, he did say that it was all headed in the right direction. We realized when we got home that I had, in fact, reached the 6 month anniversary mark – to the day – of when I had my first treatment last October. Amazing to think how quickly this time has gone. We have so much to celebrate right now – my progress during these past 6 months with you all at my side, the arrival of two new baby boys into the larger family – Jaden and Jet (I’m eager to give them a cuddle), a new knee for a good friend of mine and a strong recovery from a mild heart attack of someone very near and dear to me in England.
I was surprised to find that the first few days which would normally have found me in an overdrive mode did not happen. Gary and I both felt that this was likely still the carryover of all that had been done for the Easter trip back to Toronto. On reflection, we reminded ourselves that most people would have been tired out from our schedule – a 3 day drive from LA to Toronto (very quick considering we covered 2,500 miles/4,00 km), followed by 2 full weeks of rushing around amidst the ever-increasing and ever-stressful Toronto traffic, then a 4 1/2 hour flight back to Phoenix to pick up our car and finally the 6 hour drive to LA.
What followed proved to be the 2nd most challenging time for me in having to manage my side effects. I am so proud to have found a solution to the mouth sores and somehow, with all the different aspects to think about, I managed to take my eye off the ball. To say that it proved to be a “bummer of a time” would be both figuratively and metaphorically an understatement. To avoid a lot of the gory details, what turned out to be an inflamed hemorroid as a result of the bowel going lazy on me from one (or two) of the drugs, overnight, this situation turned into what would best be described as an inflamed diaper rash. Oh how I do sympathize with a grumpy baby with a rash — I actually have an idea of just how bad it makes you feel. I made my first mistake by thinking I could deal with the situation with over the counter offerings and ended up waiting too long before calling in to Dr. I’s to get a prescription cream called in. Sadly, with all TV channels streaming the Boston marathon bombing, it would prove a challenge to find something less painful to think about.
By the time I went in for chemo #3, all had calmed down. My bloodwork showed a very low white blood count — not really surprised as I am sure that the residual army of white cells were all still very busy with keeping my bottom in good shape. This delayed the treatment as the nurses had to wait for Dr. I to approve whether I would be able to receive my treatment. It was decided that I would have my full treatment and also receive a Neulasta booster shot at the end.
While we were waiting in the chemo suite, Lisa the Receptionist popped around and whispered in my ear that cousin Pat was sitting in the Reception area waiting to meet with Dr. I. I immediately found my IV pole and took it for a walk with me to the Reception area. When Pat saw me, he immediately came over and gave me a huge hug. He was a bit confused as it was a Monday and he knew that my usual treatment days are Tuesdays. We had actually brought the day forward in anticipation of an early visitor in Sun City West. We then went in to one of the vacant private rooms and had a chat. Pat advised me that the CD’s containing my scans had been sent off to his team and that they would be running the tissue samples they have through the genomic sequencing platform that he has just developed. The results should provide insight to Pat on a more targeted form of treatment. In many respects, this is still so leading edge that it could be viewed as somewhat experimental. What I do not know is what type of treatment would be considered once the sequencing results are in.
On my return to the chemo suite, we met with a new patient who flies in and out from San Franciso the same day with his wife for his treatments. We unfortunately did not get their names. His wife explained that her sister is a GI (gastro intestinal) specialist and had recommended Dr. I at the outset. However, since her husband is a pastor in San Francisco, they chose to have his treatments by a local oncologist. He was able to have surgery and soon after they discovered that the cancer had spread. They were shocked to find out that the oncologist intended to continue with the same treatment as before and that was when they realized that they needed to make the change. It is quite interesting to see how far a patient is prepared to travel to receive the best treatment possible for their situation.
The next day being Tuesday, we met with Marie and Rick for our usual post-treatment dinner. Marie received only one drug this time and a different one at that. This is likely Dr. I performing his artistry and trying to make sure that there is no further regression on Marie’s part. Prior to her appointment with Dr. I, Marie continues to see Dr. Wellisch – the psych/oncologist. Marie spends the first half hour on her own and then Rick joins her for the second half. They are both finding that just by regaling their “story”, which is the first time they are doing so from start to finish to a third party, they are already feeling so much better. They recapped to us a 10 year struggle with Rick’s ex-wife, who is a bipolar, who set out to prevent Rick from seeing his children (the worst pain for any parent) and then to try and leave him penniless. With Marie’s journalist’s training and Oxford background, they were able to write up their own briefs as their lawyer ended up retiring in the midst of this lengthy period of time. They lost the battle with the children who sadly had been placed right in the middle of this huge fight but they were able to maintain Rick’s pension at a huge monetary cost of close to $14,000 per month for support payments. Even then, the highs and lows of his ex-wife’s condition still found her unable to manage the finances. Ultimately, Marie feels that the continuous stress during this period of time, may have been a large contributor to her cancer today.
My hair has started to grow back again and right now looks as spiky as some of the cacti that abound in Phoenix. The only difference is that the cacti are presently displaying some very pretty flowers. I asked Dr. I about this and while no-one has a logical explanation for this, he was adamant that it had nothing to do with the effectiveness or not of the chemo treatments. When I bumped into Francesca, one of the ladies I first met with on day one, her hair had started to grow back. Interestingly, as well, she was the one out of the 3 patients I met with on the first day, who suffered terribly from mouth sores and sores in her throat. I am wondering whether there is any connection with my mouthsores and hers and now our hair growing back???
The main side effect from round 3 was extreme fatigue and I found myself sleeping a good part of the day and then through the night as well. Yesterday and today, I have started to feel like I am getting back on track from an energy perspective. We are only in Phoenix for a week and much of this will be spent resting and regaining my energy levels. Next week, we will drive to Lake Arrowhead in the San Bernadino mountains about 1 1/2 hours from LA. This should be a beautiful part of California and we are excited to have Gary’s middle daughter, Liane and boyfriend, Mat, fly in to spend some time with us there.
We leave you with a saying from Alberto Casing:
Today will never come again,
Be a friend. Be a Blessing. Encourage someone.
Take time to care. Let your words heal and not wound.
Live and appreciate this moment, today.
We appreciate deeply all the love, support and friendship we receive so unconditionally from you all. Thank you.
Maureen and Gary