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.

Prayer Request - Again

So – I had written but had forgotten to post the "Phew" blog until today. That blog post had a lot of good news. Unfortunately, I think I’m heading into a rough patch once again. After seeing the chiropractor 3 times this week, my back is feeling much much better. However, I am continuing to be plagued with stabbing pain in my nether regions and my stools have begun to shrink to pencil thin. These are the same symptoms that I had before they found the tumor in my rectum this past summer.

I am thrown into yet another place of fear, sadness and panic. I will be meeting with Dr. Fisher on Monday for what was to be my regular PDL-1 infusion. However, I may call today and see if we need to push forward with a CT scan.

Oh – how I wish this disease would leave my body.  This rollercoaster of fear is so exhausting. Pain is exhausting. Lack of sleep from pain and fear is exhausting. I can’t help but go back to the question, “Why me?”  I know that’s not a helpful question. I know it’s not a rational question. And I know it’s an unanswerable question.

But – it is one that continuously floods my head.

When I met with the radiation oncologist earlier this week, he told me that I had been very fortunate. A few years ago, the average length of survival for metastatic colon cancer was 10 months to a year. He said that I should be happy that I had so many additional years. Yes – of course I’m happy about that. But his comment made me feel like I am indeed living on borrowed time. 

This weekend, I’m heading to Baltimore for my cousin’s kids’ b’nai mitzvah. I just pray that someday I will get to attend my own girls’ b’nai mitzvah.

We should know more soon. Please send me a little extra prayer this week.

Phew!

So – I just realized that I haven’t updated all of you as to the latest on the journey. As I may have mentioned previously, for the past few months I’ve been experiencing a lot of lower back pain. I hadn’t been able to get it checked because, quite frankly, I didn’t have the time. It was the end of legislative session and my office was in the throes of getting bills passed. Meanwhile, at home we were building a new bedroom and bathroom for our exchange student (who we also had to get situated for her year). Oh, and then there were my existing two girls going back to school, plus repeated trips back and forth to Stanford for cancer treatment. So, my poor back took a “back seat” to everything else. 

But – the pain started screaming louder and louder. Dr. Fisher and his team kept trying solutions – mostly narcotics and other pharmaceutical fixes. He had mentioned getting an MRI in case the pain was due to spine metastasis. However, I kept putting that off. Why? Because frankly, if I had cancer in my spine, I didn’t want to know. Progression of disease means I’d be kicked off of my study. And – as I’ve written before, there aren’t a lot of options if I’m kicked off of my study. So – I lived with the pain and tried to ignore it.

After many sleepless nights, I carved out time to see a chiropractor. I figured this is just old age, so perhaps he can adjust me and off I go!

Interestingly, the day before I went to see the chiropractor, Dr. Fisher’s physician assistant, Dana, texted me just to check in and see how I was doing. I texted her back that my back continued to be in pain but that I’d be going to the chiropractor the following day.

Within seconds, I got a text back saying “no you won’t.” Apparently, when Dr. Fisher and Dana saw that I was thinking about going to a chiropractor they panicked. Without knowing if this was spine mets, getting treatment from a chiropractor could be extremely dangerous. He could end up breaking my spine.  But – Dr. Fisher did not believe that they would find mets. His guess was that my back problems could be chalked up to old age – either a bad disc or sciatica. But – he would not allow anyone to work on me until we had ruled out mets.

The appointment was canceled and I tried to figure out how much longer I could go on with the pain. Finally, a couple of weeks ago, I was down at Stanford for my infusion, and I convinced them to give me an MRI the next morning.

On Tuesday morning I spent two hours in the MRI machine – laying perfectly still. I don’t know if you’ve ever had an MRI, but it is like going into your coffin. I am not a person who has claustrophobia, but I sure as heck felt claustrophobic inside of that machine. 

So – let me cut to the chase – after many days of waiting for the results, I finally received a text from Dana making sure that someone had told me that my MRI was normal. I did not know. Interestingly, I received the text at our pre-Sunday School religious service. And – it came right before we said the shechechiyanu.  The shechechiyanu is the prayer of thanks. How amazing is it that I got that news right then. Furthermore, it came during the 10 days between Rosh Hashanah and Yom Kippur. To me, that meant that I was being inscribed in the Book of Life for the upcoming year.