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.

Prayer

Today, I opened my mail to find a lovely card inside. When I opened the card, there were beautiful messages from many women, none whose names I recognized. I finally noticed who the card was from – the United Methodist Bible Study Group of Nevada, MO. After looking through the names more carefully, I realized that one of the women was the mother of a colleague and dear friend of mine from Southern California. She had told me awhile back that her mother’s prayer group had been praying for me, but it had completely slipped my mind (I’m going to blame the residual effects of chemo brain).

The notes from these women were filled with love, hope, faith and determination. I was overwhelmed with gratitude and quickly began to tear up. These women were praying for me – this little Jewish girl from Davis. They were spending their energy and time to ask God to help me.

But – this is not the first time that people of faith from throughout the world have asked for God’s help for me. Throughout the years, prayer sisters have popped up in the African American community, friends of friends in Israel have prayed for me at the Western Wall and during their marriage ceremonies, friends have lit candles in churches throughout Europe during their travels, I have received water from Lourdes…quite honestly, it has stunned me how many prayers to God have been said throughout the world to help me as I go through my cancer journey.

Recently, I was reminded by one of these prayer warriors that while I thank a lot of folks in my blog – my doctors, my family, my friends – I rarely mention how grateful that I am to God. I was reflecting on that. I know that I ask for prayers on a regular basis from all of you – so it’s not like I’m hiding the fact that I think that God plays a significant role in my healing. I often talk to God – asking for strength – asking for courage – asking to restore my health. I also personally thank God on a regular basis for the many miracles that I have witnessed over the past 7 years that have enabled me to be alive and thriving today.

I do believe in the power of prayer. So – for those of you who are concerned that I haven’t publicly acknowledged God’s role in my healing – I’d like to be clear that I am very grateful to God for bringing me to this day. I don’t know what he/she has in store for me in the future. I hope that it will be a long life. Furthermore, I am so very very grateful for all of your prayers asking God to aid me throughout my journey.

I just realized that I did not tell you about my latest cancer challenge – I had my stent in my ureter changed on Monday. The surgery went without incident – it was only 30 minutes and I was back at home by noon. On Tuesday, I will be returning to Stanford for my next infusion of PDL-1. I’m expecting this to be without incident.  I’ll be back working in Sacramento by mid-afternoon and home to help the girls with homework by that evening.

Thank you, God.

I Can Breathe

First, I need to apologize. In my craziness this week, I neglected to update all of you on the results from my CT scan. I realized about mid-week that while I had posted on Facebook, I had neglected to inform all of you. And then my week got away from me. It is now Sunday, and I am finally sitting down to give you all the news from last Monday.

On Monday morning, bright and early, I was at Stanford for my CT scan. I was jittery knowing that this was a critical day and the outcomes could have a profound impact on my life. After my 7 am CT, I worked for awhile and then went to my scheduled appointment with Dr. Fisher at 11:45 to get the results only to find out that he was running at least an hour behind. Finally, at around 1:00 pm, my dear friend, Shelley (she came to hold my hand on Monday) and I were ushered to the back waiting area. After waiting an excruciating amount of time, Amanda, the woman who works on the PDL1 study, came in to see me. She told me that while she could not officially tell me anything, she believed that I was going to get an infusion of my wonderful PDL1 that day. Basically, she was cryptically telling me that my tumors had stayed stable and I wasn’t going to be kicked off of the study. I began to cry with joy and relief. Shelley then began to cry. Amanda then started to tear up. Dana, Dr. Fisher’s right hand, walked in to give us the “official” news – the tumors had stayed stable and in fact a few of them had actually decreased in size. Furthermore, my blood work showed that had my cancer indicator number had dropped from 72 to 54 in 3 weeks. This is a very significant decrease.   We were all overwhelmed with happiness. Amanda and Dana told us that they had been on pins and needles for the past couple of weeks because they were so concerned about what the CT would show following the my most recent PET/CT.

Dr. Fisher entered the room with a HUGE smile on his face. The room was joyous knowing that we were not about to change direction. He did offer a couple of more options to have in my back pocket should I no longer get to stay on the trial (neither of the new options were promising – so hopefully I won’t every have to tell you about them). Fortunately, I was given clearance to get my infusion of PDL1 and I spent the afternoon happily soaking in my amazing drug.

Directly following my infusion, I jumped in my car and even made it back to Sacramento in time to put on a whiskey tasting fundraiser for an Assemblymember!

My next scan is not for another 3 months. I feel like that gives me a chance to breathe. I am incredibly relieved that my tumors did not grow, that the PET/CT was picking up other activity besides cancer growth. 

In other good news, the pain in my tush is slowly decreasing and I’m not in constant overwhelming pain. I am definitely looking forward to the day that the pain is no longer such a significant part of my life. But, I’m not complaining – my tumors are stable (which, for me, is all that really matters)!

Thank you all for your heartfelt prayers, positive thoughts, love and amazing energy. I just know that having you all by my side was the reason that I received such phenomenal news on Monday. I am filled with gratitude.

Monday

Thinking about this coming Monday takes my breath away. It is on that day that my life could change. Spoiler alert – I don’t want my life to change.

To get you all up to speed….

As you know, I had a tumor that was discovered in the scar tissue in my tush. The problem was that in order to radiate it effectively, they needed to see it on scan. So a few weeks ago, I took both a PET/CT scan and an MRI with radiation. Fortunately, they were able to locate the tumor and I commenced a 10 round radiation program on July 14. The radiation oncologist was wonderful working with my schedule. He even planned for 2 rounds of radiation on the 17^th so that I could fly down to San Diego that evening. I had to present to my board the following morning and I was holding a fundraiser for the Assembly speaker that afternoon. Amazingly, everything went off without a hitch. I can’t tell you how incredible it was that he was able to work with me – although he did think I was a little nuts.

Unfortunately, the PET/CT scan showed a lot more activity than my previous PET/CT.  This is very concerning for everyone since it could indicate significant cancer growth. So – on Monday, I will be given a regular CT to see if there is growth or if what was lighting up the CT was only inflammation. If my CT shows growth, I will be kicked off of my wonderful Genentech trial with PDL-1. My options at that point are not encouraging. They basically consist of 3 potential paths forward:

1. Go on a trial called CTLA4 – this would inject another immunotherapy directly into a tumor and then we’d blast it with radiation with the hope that it would ignite my immune system to go after the cancer throughout my body (very similar conceptually to what we’ve been doing). Unfortunately, there aren’t great stats that show that this will work on colon cancer.
2. Go on another trial with a name I can’t remember – there is a small company with a single product that they are considering for me. Unfortunately, the trial is in Phase 1, so there are hardly any results.  Also – this trial would entail me going down to Stanford twice a week for 6 weeks for a 4-6 hour infusion. Pretty awful sounding with no encouraging stats to make me excited about putting myself through it.
3. Go back on chemo

So – as you can see, I am really really praying that the CT scan shows stable disease and that I won’t be contemplating any of the 3 options above. If it doesn’t show stable disease, I will most likely try to find out if there are other options with other cancer centers.

I am also continuing to be in a lot of pain from the radiation. They said that the pain should begin to dissipate after a few weeks. It can’t come soon enough. I’m having trouble sleeping because of the pain and that makes dealing with all of this uncertainty even more difficult.

Now you are all up to speed on the latest.  I hate to ask it again, but I need your prayers over the next several days. I’m scared right now. I’m tired right now. I need your strength.  I need your love. I need your faith and hope.

I Want to Be Old

Over the last few years I’ve noticed an interesting reversal of how I see elderly people. I’m jealous of them. While others covet youth, I covet old age.  When I see an elderly person, I say a little prayer that someday I, too, will be old. I can hardly wait for each birthday.  While I love having young girls, I want to see them grow up – I want to suffer through teenage years. I want to be there for the boy trouble, the skin problems and the teenage girl drama.

So – this week, I’ll head back down to Stanford for an MRI and PET/CT scan. They are having trouble pinpointing my tumor using a regular CT scan and they need to know where it is in order to radiate it. I want them to figure it out – fast. I am in extreme pain every day and I can’t wait to begin the radiation.

They also don’t want to radiate the tumor quickly. Because the tumor is about 3-5 cm up from my rear, they have to be very careful. They don’t want to burn a hole through anything down there. I’m not going to describe what can happen when a hole is created – but it’s not pretty.

Going slow means that I will be going to Stanford daily for 2-4 weeks (depending on what they see this week with the tests) for radiation. I hope to begin on July 14. Fortunately, we’re doing this while the legislature is on recess. I’ve had to cancel a couple of vacation plans, but that’s ok. I’m just glad that no one is talking about excising body parts at this point or kicking me off of the PDL-1 study.

When I was complaining about the amount of time that the radiation was going to take, my radiation oncologist, Dr. Albert Koong, looked at me and said, “Eve – I want to go slow so that you don’t have problems 10 years down the line.” While I wasn’t crazy about the amount of time that it will take for the treatment -  it was like music to my ears to hear him use the phrase “10 years down the line.”

We’re hopeful that the radiation coupled with the PDL-1 will jump start my immune system once again. Our fingers and toes are crossed that this will be the magic that we’ve been waiting for. I so want to rid my body of disease.

I’m looking forward to getting old. I’m looking forward to everything that comes with getting old. Because then I will have lived long enough to have raised my girls – which is, by far, my most important goal.

Bring on the birthdays!