Hello Everyone:
Yesterday proved to be an amazing day for us, having arrived in LA the previous evening. We met at 12.30 pm with the specialist oncologist located at UCLA, courtesy of my cousin, Pat. Dr Bill (for short) had insisted that we fly down or he would fly up to Toronto. The first round of treatment is the most critical and another compelling reason was for us to meet with his other patients.
Dr Bill’s office looked like a dentist’s nightmare with loads of Halloween candies displayed at reception to tempt you. I spotted a few healthier items like protein bars and water but that was about it. Everyone was so upbeat and friendly … the microwaved smell of lunch brought in by staff/patients wafted through the air and reminded us that we had not had any lunch ourselves after a very early breakfast. We also were greeted by Sony, Dr. Bill’s shih tzu who was clearly a part of the furniture.
First we met Elizabeth – a lovely, elegant lady who is a retired school principal. Elizabeth (E) had been diagnosed in 2009. For many, the situations are inoperable as the tumour has wound itself around a major artery so chemo has to be the first line of treatment to shrink the tumour and possibly allow surgery after. E was on the same regimen I will have, and after about a year, they were able to perform surgery. She shared the effects of the drugs, how she managed. She looked radiant, has regained all her hair, independence and had just come off a few exciting trips around the world. She gave me her telephone # to call anytime.
Next we met Gail – aged 40. Gail was a heart-wrenching case as her problems surfaced after giving birth to her 7th child. Her initial diagnosis 3 1/2 years ago was ovarian cancer as she had a tumour there. Eventually, she was directed to Dr B, who told her that the primary cancer was pancreatic and it had migrated to her stomach and then ovaries. She was still receiving treatment but her last tumour marker blood test came through in the normal range. We shared her experiences and the impact on her family (the younger members still do not know what she has nor the full onslaught of what she is going through). In Gail’s case, appetite has not been affected and she told us that she could eat 3 hamburgers as we spoke!
However, all the other side effects like hair loss (simply every hair on your body), fatigue, nausea etc. are there.
Then we met Francesca – aged 41, who has a 2 1/2 year old. F was diagnosed last December and again her tumour was inoperable for same reason as Elizabeth, and likewise my situation. F is a very detailed individual and insisted that Dr B give her a list of 12 of his patients whom she wanted to speak to. She shared that out of all the people she spoke to, each case was a very different diagnosis and degrees of severity but the key component that came through, was the strong willpower evident. F goes to an acupuncturist twice a week which helps her. Her worst reaction to the meds are mouth sores which make it difficult to eat and painful. At times, she has to write notes to her husband. She still seemed to have a reasonable amount of hair so, everyone is different. F told us of two men who were in the office having their treatments – one was over 7 years and I thought I heard the other was close to 9 years.
F gave both her email and tel #s and told me to be in touch anytime.
Gary’s first question to Dr B was why we never hear more positive outcomes for this disease in the news? His answer was a combination of either the doctors not really knowing what they are doing and the fact that there is insufficient funding from drug companies as the process to come up with the right drug or combo takes too long.
Pat, my cousin, arrives as he was delayed in Chicago. After two long hugs to cover the 25 years since I saw him, I had to see Dr B for my physical. Blood was taken to make sure the white and red counts were good to go. My BP was way too high (surprise?) and so I got a prescription to bring the diastolic # (lower one) below 80 as one of the drugs would push this higher. Then we started with the pre-meds (anti-nausea + something else). And then the first treatment minus the one drug which impacts BP (this is given twice only during the regime so they’ll include it next week). One of the drugs is administered through a slow infusion using a pump which is calibrated to run the entire week. I have this unit with me 24 hrs/day. The initial regimen will have me going in once a week for two weeks but then I have the slow infusion unit with me for the entire 3 week period. Then there is a 2 week off period and we’re hoping to rest a little in Phoenix and quite likely come back to LA for the second round of treatment.
Last night I felt a little lightheaded after the treatment but I thought it was more to do with the fact that we did not have a proper lunch (we had a few snacks in my bag). After we left Dr B, we went to Costco to buy a BP monitor and we ended up having a large slice of pizza each (something I would not do normally). It sure tasted good!
We were both tired from the eventful day and I was feeling very sleepy so went to bed early.
I leave you all with a wonderful saying by Vivian Green:
“Life is not about waiting for the storm to pass….
It’s about learning to dance in the rain!”
Thank you all for your love and support. Gary and I appreciate all that you do for us. We are blessed to have the greatest children, family and friends and we love you all.
Maureen
P.S: next update may be from Gary as side effects may start kicking in. Guaranteed to be insightful and short.