Hi Everyone:
After a great recuperative 2 weeks in Phoenix, we left early on Monday for LA. We do not have to go through the city of Phoenix for the drive but we do have to cut through the city of LA and head west close to Santa Monica just 10 minutes from UCLA. Traffic was quite slow once we hit LA but then opened up so we were quite fortunate. It is their Thanksgiving today and last night the TV showed miles and miles of car lights snaking their way slowly along the highways with everyone making their way to rejoin their families. This holiday is bigger than Xmas for most Americans – we’ve been bombarded with ads on TV showing just how much madness will take place for their Black Friday sales. The stores usually open at midnight tonight for all their sales …. I guess for those who go, at least they’re working off the calories from their turkey and pumpkin pie. Walmart created a bit of a stir announcing that they would open at 8 p.m. and many are not in favour of this as it would spoil the day. Their workers’ union seems to be pushing back so it may not happen.
On Tuesday, we went in for my first chemo of the 2nd Cycle. We were enthusiastically greeted by Sony, Dr Bill’s shih tzu, who promptly rolled on his back expecting and getting a long tummy rub. I was thinking afterwards that this may be part of Dr. Bill’s therapy for his patients or me thinks, it may be therapy for Dr Bill as well. Whatever the answer, it seems to work all around.
I signed in and checked with Lisa, the Receptionist, what the office’s Xmas/New Year hours would be as Gary and I needed to plan ahead but more importantly, my 3rd Cycle is scheduled to be on Xmas Day so I needed to check whether we could push this to the 26th. Lisa told me that she did not know as Dr. Bill had not specified as yet but the staff were chomping at the bit to know so that they could also make their plans. She then told me that he was not in that good a mood, which was very unusual as he was, as she is, as I am, a Sagittarian! We had a little laugh about our sign but in the end, it was agreed that I would be the conduit to secure the information the staff wanted to know. They were all wanting to get the 24th off instead of the 26th and as it would be easier for Gary and I to restart my chemo on the 26th, I was going to push for that.
We met with Dr. Bill who very diligently asked about all my side effects, noted these down and wanted to know whether I had experienced any neuropathy issues (where the tips of your fingers and toes go numb). A common side effect for many … I’ve been fortunate in that I have only noticed a slight tingling first thing in the morning if I handle anything cold from the fridge. He wanted to know whether my appetite had returned and tried to evaluate this against the amount of food I was eating before I started treatment. He registered the 2 lbs of weight I had regained even though I am still slightly below when I started. It was our turn then to ask the questions: would the 3 week on 2 week off regimen continue for me? Yes, as long as the white and red blood cell count continued to be within an acceptable range. Would I be okay to fly home with a weakened immune system.. I would wear a mask on board? It would be fine … his approach is to deal with the side effects quickly through medication so that the patient can lead as normal a life as possible.
We then discussed future treatments. At the outset, one of the options was for my cousin Greg in Toronto (spine surgeon) to explore the possibility of locating an oncologist willing to administer the regimen. We asked Dr. Bill’s advice on the infrastructure that would be needed and how this could be handled remotely on his part. He did not feel that it was feasible as the local oncologist would not have the necessary commitment and would not want to take instruction from another oncologist with whom he did not already have a working relationship. Also, would the oncologist have a practice with enough patients with the same type of cancer? We then told him that we had discussed the pros and cons while in Phoenix and that we felt our best treatment option would be to remain in his good hands but that we would attempt to use our home in Phoenix as a base to drive in to LA and back for each of the treatments. Hopefully, I will be physically able to do so as it would require us to drive for 6 hours with no stops and good traffic the day before my treatment, go in first thing in the morning for my treatment and then leave immediately after. So, in total, approx 14 hours of driving over 2 days allowing for a stop and some delays. So far, I have noticed that the pre-meds given before the chemo drugs, take me through to the following day at least, without any side effects kicking in so we would at least be back in Phoenix by then. The drive also is a relatively straightforward one. We also agreed that I should have my bloodwork for white/red cell count done the day before to ensure that the levels were good enough for the treatment otherwise the trip would be for nought if we arrived to find that the count was not acceptable.
We then tackled the Xmas/New Year office hours and his initial response was that he did not know but after subtle pressure from us …. we needed to book our flights and that it would be a bit easier for us to have my chemo on the 26th, he agreed to this timing. Needless to say, Lisa was ecstatic to hear this. Later in the afternoon, Dr. Bill told me that the CA-19 test results after the first cycle showed a 25% reduction from when I first came in which was a very healthy reduction just after the first round and which clearly indicates that I am responding well to the chemo drugs. Let’s keep our fingers crossed that this will continue.
Joan, the chemo nurse, then took over. There was a bit of an “ouch”, when the needle had to be reinserted into the port-a-cath as the skin had already healed during my 2 week break but I quickly reminded myself that it’s just once for the entire cycle. Bloodwork was fine and the premeds/chemo took approx. 2 1/2 hours which is quite efficient. At the end of the IV treatments, I was reunited with Hermione, who had been all topped up and ready to reattach herself to me 24 hours a day for the next 2 weeks slowly infusing the one drug in to my system and hopefully, working her magic. When Joan gave us a listing of the chemo drugs which had been administered, we noted a a change in one of them. As Dr. Bill was tied up with other patients, it is on our list for next week’s questions.
On Wednesday, I found myself wide awake at 3.30 am in overdrive so I caught up on a large backlog of emails and internet research projects, got in touch with 2 other clients who were not officially aware of my situation. I stayed in this mode until 10 pm and then had a good night’s sleep. On the other hand, poor Gary needed to have 2 naps during the day … I think he just got tired watching me in overdrive mode! This morning, still feeling great with no signs of nausea or fatigue as yet. Perhaps my 2 week recuperation and the new chemo drug? Whatever it is, I accept with open arms for as long as it will last as I know that at some time, the rest of the side effects will follow but are easily dealt with. I have adopted a preventative position on the mouth sores and have been using the prescription rinse twice a day (calls for 4X) even though none have so far reappeared.
Great news as we have also booked our flights home for December 7th arriving just after 11 p.m. I managed to bring forward my last treatment to Dec 3rd to give me enough time for most of the side effects to have worn off before flying. I am hoping to use the last vestiges of “pull” with Air Canada to secure two upgrades to business class but will have to wait a little closer the date to find out. Our plan at this point is to drive back with my car on Dec 20th either to LA or via Phoenix if the weather allows for good driving so this year Xmas day will be in one of the 2 cities but we’ll celebrate with the family earlier on.
Thank you all once more for your unconditional support which continues to inspire Gary and I and which gives us great comfort knowing that you are all so close with us on this journey. I leave you with two lovely verses from the Bible shared with me by a dear friend.
“Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him
and He will make your paths straight”. Proverbs 3:5-6 NIV version.
“Your word is a lamp for my feet, a light on my path” Psalm 119:105 NIV version
It’s a beautiful sunny day in LA and Gary and I will head out for a walk in the sunshine. All our love and warmest wishes to you all.
Maureen and Gary