2 Weeks of Extreme Stress

The past 2 weeks have been 2 of the roughest that I’ve experienced over the past 7 years.  As I’ve noted earlier, I have been having a significant amount of pain in my back, my tush and my vagina. These pains have kept me from sleeping more than a few hours a night. I have tried narcotics, a chiropractor and a host of other modalities – but finding relief has been elusive.

On Monday, October 13, I went in to Stanford for my regular appointment with Dr. Fisher and to get my PDL-1. I told him about my pain, my thin stools and when they poked around in my vagina, things were not normal. He immediately ordered a CT scan and vaginal ultrasound. We talked about the strong likelihood that these were symptoms of cancer growth and then discussed potential next steps. We were both confidant that once we confirmed “progression of disease” via CT, that I would no longer be able to stay on my wonderful Genentech PDL-1 and we’d have to figure out other options.

 
Unfortunately, the options that he outlined were not promising and every single one of them came with debilitating side effects (massive rash, blisters, etc.) This was devastating.

 
The week was only to get worse. On Tuesday, I continued to have significant problems with my vagina. I contacted my gynecologist who fit me in first thing on Wednesday. Upon examining me he determined that I was now dealing with a rectovaginal fistula. Next to the ostomy bag, this was the nastiest thing imaginable. We believe that when Dr. Fisher’s assistant was examining me that she burst the fistula.

 
The fistula was always a potential side effect from radiation. However, my radiation oncologist tried to be very careful to avoid this. Unfortunately, due to the aggressive nature of my tumor coupled with the weakened tissue from radiation, this created a perfect storm and now I am dealing with this new challenge.

 
Since Stanford’s treatment options were so dismal, I decided that it was time for me to explore other options. I hurriedly set up appointments with UCSD, UCSF, USC, City of Hope, MD Anderson, the Block Center and Cedars Sinai to take place in the next two weeks. I felt the need to “do” something and since I can’t control what’s going on inside, the best I can do is to come up with a plan of action.

 
Dr. Fisher also set me up with an appointment with Dr. Andy Shelton – my amazing colorectal surgeon. Based on the fistula plus the thin stools, Dr. Fisher’s assessment was that I would be looking at putting a permanent ostomy bag on. This was a very very bad week.

 
My fear was debilitating. Amazingly enough, last weekend my job brought me to Pebble Beach for the California Legislative Black Caucus event. One thing that I have learned over the past 7 years is that the African American community is very spiritual. So – over the weekend, several legislators pulled me aside to pray with me. They impressed upon me to replace “fear” with “faith.” They were truly amazing.

 
On Wednesday, I went in for my CT scan and vaginal ultrasound. I received an email from Dr. Fisher that evening informing me that the scan did not show progression of disease. It hadn’t grown or spread – it wasn’t in my liver, it wasn’t in my pancreas. Strangely, they can’t see the tumor in my tush which continues to give me so many problems. But – because the scan showed stable disease, I can officially stay on my Genentech trial. I was stunned. This was not the news that I was expecting – it was beyond my wildest dreams.

On Thursday morning, Pat and I went back to Stanford to meet with Dr. Shelton to talk about my surgery. He confirmed that he did need to put a permanent ostomy bag on, but that it didn’t have to happen within the next week. Furthermore, he said that if I wanted to remove tumor from my abdomen, that he would happily do that as well.

 
It occurred to me that this could be a strange blessing in disguise. Dr. Fisher has wanted to get my tumor analyzed for quite some time – to figure out its genetic makeup and to do some chemo sensitivity analysis. However, all of the diagnostics companies need fresh tumor. Because I haven’t been operable, we have not had the ability to get fresh tissue.  This is our chance. The price is losing my colon – but this opportunity may lead to the lifesaving treatment that we’ve been looking for.

 
Because we don’t have to do the surgery right away (I actually have pushed the surgery to the second week in December so that I can put on CHI’s annual Lifesciences Academy), I have time to arrange the tests with the companies that do the analysis. It also gives me the opportunity to come up with the money to pay for the testing.

 
So – there was some very good news and some not so great news this week. But perhaps, the not so great news will shine a light on my cancer enabling me to continue on my journey.