Beautiful Friends and Family:
This is my first post and for some of you the first update after the email Kathy sent about my cancer diagnosis last month. I thought we would start this to make it easier to let you all know how I am doing. I am not that good at the social media communication stuff (I think I still have a facebook account somewhere), but I will have more downtime coming up so hopefully I can keep this current.
We met with my oncologist, Dr. Jian Chen from Kaiser, on Wednesday the 8th; we got the appointment earlier than expected thanks to (my great primary care doctor.) Dr. Bluck. We had a really positive experience with Dr. Chen. He provided detailed information about my diagnosis and treatment, and was upbeat while still pragmatic about the prognosis. I had viewed a webinar about pancreatic cancer treatments on the pancreatic cancer network (PanCan.org) right before the meeting with Dr. Chen, so that was really timely and helpful in educating me on the history of this illness, treatment options, prognosis, etc.. Kathy had also done a lot of research before the appt and so had many questions as well as an idea about some of the most successful treatments she had read about. If needed, Kathy was prepared to fight for information and some of the treatment options based on advice and information she got from research and friends. To our relief, the treatment we felt would be the most beneficial is the one Dr. Chen immediately recommended. No fight and no need to be a bulldog. Kaiser had also set up a consult with the cancer social worker right after our meeting with Dr. Chen, to help us through the diagnosis. She was warm and helpful, providing great information and resources. Everyone provided phone numbers to reach them any time…and based on our experience with Dr. Bluck, they really will respond quickly and personally. They also had all my treatment and follow up appointments, as well as a consult with a dietician, set up for us by the time we ended the meeting with our social worker.
At this point surgery nor radiation is an option. The treatment I have been prescribed is chemotherapy utilizing Folfirinox and is a combination of four chemicals most likely to be successful. I have a general chemo class on Wednesday the 16th to give me more info on chemotherapy in general, then on Thursday the 16th, I have a procedure to place a PICC line in my arm. Basically its an intravenous tube that stays in my arm to provide easier and more reliable access to a vein through which to administer the drugs. Then on Friday the 17th, I have a 6 hour chemo treatment at Kaiser on Zion, with about 3 hours of drugs via the PICC line (kind of like giving blood in reverse) and then some monitoring. During this in-patient chemo treatment, the treatment area is pretty private, with DVD and wi-fi and Kathy will be there with me. At the end of the day, if all goes well, I get released home. On Saturday, Kathy connects me to additional chemicals (at lower dosage levels) via a portable pump and the PICC line and I do 40 (or so) hours of “continuous infusion” at home. I can walk around, sleep, cook and even go out during that process (if I feel like it). After that, I have 12 days off the chemicals. I will go in for a regular blood tests on Thursday the 30th to make sure my blood levels are all good. If everything checks out, I start the process all over again on Friday the 31st with the in-patient process. These two 14-day processes are called 1 cycle. I have three cycles scheduled, through the end of March. In about a couple of months or so, they do another CT scan to see the effects of the treatment. If things look positive, we continue the treatments, if not we switch to another course.
There are of course a lot of side effects, the typical effects everybody knows about. Though I may not lose my hair…not every body does! Some people even work through the chemo process. Amazing. I am really thankful we are in a position that I can focus full time on fighting this and not have to worry about a job, etc.
As for right now, I am feeling generally okay. Just a little cramping and bloating after eating and some pain at night. And I feel more tired than usual.
In some ways it seems like a long time since we first learned about my pancreatic cancer…and in other ways it still feels kind of unreal and that we haven’t absorbed it. I have some really good days when I feel almost normal…but I am ready for the next steps in this fight against this disease. We are all ready.
I feel so fortunate to have you all in my life. As much as this whole thing really sucks, the other side is how much love and care have come my way, and Kathy’s way and Nick’s way. That has meant so much to us over the past weeks and will be a source of strength for me as we push this fight in the days ahead.
Love to all,