It's That Time of Year!

Happy Colorectal Cancer Awareness Month! Once again, we’re pulling out the blue streamers and decorations for a fun-filled month ahead! I realize that a lot has happened on my cancer journey since I last wrote – so I’m going to give you the quick version to get you all up to date.

Radiation

I finished my 10 days of radiation on February 7th. As expected, it got steadily worse and my intestinal system was quite inflamed by the end of the cycle. It was also extremely taxing to drive back and forth the 2+ hours from Davis to Stanford. Thanks to my dear friends Shelley and Woody, I was able to spend a few nights a week down there – but there was still an awful lot of driving. I was exhausted from the drive, exhausted from the radiation and exhausted trying to work full-time and make sure my kids were doing everything they needed to do. I’m just glad that’s over!

Genentech/Roche Fun!

On a much much happier note, my phenomenal friends at Genentech/Roche flew me down to Florida for four days in mid-February to speak at the annual meeting of their manufacturing division leadership. There were 400+ attendees from their manufacturing sites all over the world.  I was asked to speak to the group as a PDL-1 patient. What I’ve learned is that it is rare for the folks who create these amazing products to meet the patients who are benefiting from their incredible work. I felt so fortunate for the opportunity to tell them how they have not only saved my life, but have given me a phenomenal quality of life. I loved being given the chance to thank them. It was a tremendous experience and I was honored to meet the people who are creating the products that are saving my life.

USC Second Opinion

A day after returning to Sacramento from Florida, I hopped on a plane and headed down to Los Angeles to get a second opinion on my care from the famous colorectal oncologist, Dr. Heinz Josef Lenz. As I walked in to meet with him, he threw his arms wide open and greeted me with “This must be the famous crazy lady from Palo Alto!” I fell in love with him instantly. The reason that I went to see him was that he had told a friend of mine that he had studies and possible trials for me that were not at Stanford. He asked that I come down and see him to discuss new options. So I went. Fortunately, he agreed with Stanford that my best course of action is to first try to go back on PDL-1. He is actually looking at starting a PDL-1 trial and told me that since I was fortunate enough to get into the trial (and have my tumors test in) that I should certainly exhaust that option first.

One of the most interesting things that Dr. Lenz told me was that he was fascinated that my cancer had not gone into my liver or my lungs. He said that this is extremely unusual for colon cancer. His assessment was that if it hadn’t already moved there that it was unlikely to do so in the future. He said that in his opinion, my cancer wasn’t out to kill me, just make things difficult for me. I loved hearing that and just pray that his assessment is accurate!

Again, Drs. Fisher and Kohrt were so wonderful about my getting a second opinion. Dr. Fisher even told me to give Dr. Lenz his cell phone so that they could discuss my care. I remember the first time (a few years ago) that I told Dr. Fisher that I wanted to get another opinion. I was so scared that he was going to be insulted. I’ve learned throughout this process that a great oncologist does not mind if a patient gets a second opinion. They know that they don’t know everything and don’t have all the answers and are not only open, but encourage getting more opinions.

I’m just hoping that the day doesn’t come that I’m schlepping down to LA for treatment every couple of weeks….

PDL-1 Restart

So – throughout all of this, Genentech has given Stanford permission to put me back on PDL-1. It is such a relief. I am “Patient Number 10” nationwide who is getting the opportunity to go back on the study. I am so incredibly grateful to Genentech for agreeing to let me go back on and Stanford for pushing them so hard to make it happen. Our hope was for me to get PDL-1 within 2 weeks of radiation, but because there’s a lot of paperwork involved, it looks like it will be closer to 3 ½ - 4 weeks. I was pretty upset about the delay, but had to recalibrate and realize how fortunate I am to be given the chance to go back on PDL-1. So – I’m just going to be grateful. I should find out soon (in the next couple of days) which day that I’ll be going back down to Stanford – but it should be in the next week or so.

We are all hopeful that the radiation coupled with the PDL-1 will jumpstart my immune system and get it working to destroy all of the cancer that is within.

Losing my Acupuncturist

This past week I received a horrible phone call from the office of Dr. Jeffrey Kauffman, my Sacramento-area acupuncturist (I still work with Peggy Arent in SF, but it’s hard to get there on a regular basis, so I have been working with Jeffrey as well since arriving in the Sacramento area 3 years ago). The call was to let me know that Jeffrey passed away on Wednesday. I had no idea that he was even ill. I had just seen him a week before. I was scheduled to see him the following Monday. Apparently, he had leukemia for the past 2 years and had been very very quiet about it. He had decided to approach his cancer with only Eastern medicine. Over the last couple of months, his white blood count went up and his oncologist urged him to start chemo. Unfortunately, his body wasn’t strong enough to weather chemo and he ended up getting the flu which became pneumonia. After a week in the ICU, his family decided to let him go.

I am still reeling. When I had seen him days before, he was coughing but assured me that he was fine. To have someone so important to me in my healing journey leave the world so suddenly has been excruciating. He heard all of my worries about my health over the past 3 years and didn’t mention to me once that he was going through his own cancer journey. He was such a gentle soul and such an amazing healer. I am so very very sad about his passing.

Although I felt like I was punched in the stomach on Wednesday night, I have to get back up and keep fighting.  My girls depend on me to continue the fight.

As we celebrate the advances in research in colorectal cancer during this special month, I feel fortunate to be on the front lines of the battle – showing others where the future is heading. I pray that the PDL-1 will work again. No one knows if it will work again – since I am only number 10, but I have hope that it will.

Now – I must go back to putting up those blue streamers….

This Sucks

On Monday, as I was laying on the table waiting for my first dose of radiation, it hit me - “this sucks.”  I am running around so much that I rarely have time to think. But, as I was lying there trying to be still, the sadness of what I was dealing with washed over me. I am really really tired of fighting this disease.

 

So many of you have been so kind to me, commenting on how “brave” I am. But, I don’t feel brave. I feel like I do what I have to do just to get through every day. In my mind, being brave is when you chose to do something difficult that you don’t need to do. My situation is so different – I have no option but to do what I’m doing if I want to have the best shot at living.

 

I also frequently hear from people that when they’re feeling sorry for themselves, they think of me and realize how much worse it could be. That always makes me laugh a little inside. At least this cancer has been able to serve some purpose – making so many folks feel better about their own struggles….

 

I am now halfway through my 10 day radiation cycle. It was a tough week – with a lot of driving back and forth to Stanford. On Tuesday, when I was meeting with Dr. Fisher, he asked me how I was doing. I told him that my gut felt warm and that I was feeling some pain. He smiled and told me that it was psychosomatic – it was too early for me to feel anything. Apparently, the radiation builds up over the two weeks, so next week is when I really may feel it.

 

The plan going forward is to try to get me back on my fabulous PDL-1 within 2 weeks of finishing radiation. I will be the first person to try this combo of radiation followed by PDL-1. They are very excited to see what happens. We’re all just keeping our fingers crossed that their theory will work and that my immune system will effectively fight the tumors that remain within. Not only would this be a huge win for me but also for hundreds, if not thousands of cancer patients worldwide.

 

But – all that being said – this still sucks.

 

Because That's Who You Are

Yesterday, as I was flying down the slopes in Tahoe, on my new ACL, (as you may recall, due to a ski injury last Spring, I had to replace my ACL) I was in tears because I realized how fortunate I was to be skiing 7 years following my cancer diagnosis.

Ellie looked at me and asked why I was teary. When I told her that it was just so amazing that I was doing so well, she looked at me and told me that she wasn’t one bit surprised. I asked her why she wasn’t surprised. Her response? “That’s who you are, mom.” Wow – I wish I had her confidence in my body.

Tomorrow I head into 10 days of radiation. They will be aiming at a tumor that is on my bladder. We are doing this protocol over 10 days for 2 reasons: 1) my tumor is in a spot surrounded by bowel and they don’t want to injure the bowel and 2) they don’t want to shrink the tumor on my bladder too quickly or it could create a hole that would enable urine to leak into my peritoneum. So – we’re going to do this slow and steady.

The hope is that the radiation will also jumpstart my immune system to go after the tumors that aren’t being hit directly by the radiation. I pray that their theory works. I also pray that this treatment isn’t too difficult, since I’m planning to work straight through this. I have arranged my schedule to enable me to go back and forth between Stanford and Sacramento with the maximum amount of time in my office. I just hope that my body weathers this protocol as well as it did the 3 day radiation treatment last February.   

I’m nervous. I so want this to work. I’ve decided I’m going to put my mind to thinking like Ellie. It’s going to work. There’s no question. It’s going to work.

And – for those of you who are curious about my wonderful Holbrook – he’s now home resting and recovering. Hallelujah.

An Update on Holbrook

First, I want to thank you all for your wonderful prayers for my amazing oncologist Holbrook. I was stunned by how many of you responded to my call to action for him. He was incredibly grateful when I shared your outpouring with him.


Many of you have asked how it went yesterday. At 4 am this morning, Holbrook sent out the following e-mail....

Thank you for your kind words and thoughts. The surgery itself was 3.5 hours, moderate blood loss, bleeding was well controlled and two pins removed from top and 1 from the bottom of the femur holding the rod in place. Titanium rod was literally unscrewed with a special device like removing a flat tire from a car. This part was tougher than expected. The empty bone was inspected and washed with a special device that allowed visualization and culture of the potential infection. Another device was used to search along the bone and biopsy sites to ensure no evidence of bone disease. Closed and now 6 weeks of antibiotics with a fairly strict non-upright recommendation for the beginning of the process, followed by crutches, then toe touch on the left foot. It is unlikely that the bone is strong enough at this point and a personalized knee replacement is being designed to include a knee joint and long stabilizing rod that will act as my femur. This wouldn't be placed till end of March/April. Then... I walk...

Till then, overcoming pain and pain specialists will work with me on the best plan tomorrow. Thank you all again. Wish I was at Stanford.

He is now on the road to recovery. Thank you all again for everything you did yesterday. I just can't wait for him to get back to Stanford!

A Prayer for Holbrook

As you all know, I am completely in love with my oncology team. They have dedicated their lives to ridding cancer patients of disease. I cannot begin to express how much they mean to me and hundreds, if not thousands, of others who have been helped by their phenomenal care.

A couple of blog posts ago, I included a New York Times article about my amazing oncologist, Dr. Holbrook Kohrt. When I sent it out, I didn’t realize that he had done that interview from a hospital bed. While he is now home and resting, Dr. Kohrt will be heading into surgery on Wednesday to repair a leg injury from a fall several months ago. As you may recall from the article, Dr. Kohrt is a hemophiliac and thus, any injury, surgery, heck – even a cut -  is extremely dangerous for him.

I am calling out to you to request your prayers for Dr. Kohrt as he heads into surgery on Wednesday. We need him back and at full capacity at Stanford to continue doing the work that he loves – finding ways to fight cancer. I need him.  His other patients need him. The world needs him.

Many of you have sent me prayers over the years. You have helped me through some very rough times – so many surgeries, so much chemo, so much pain. But now – I need you to help this extraordinary man.

 

Please – take some time on Wednesday and send a prayer or just some very positive thoughts to my dear friend Holbrook. He needs all of us – so let’s be there for him.

No Bag Here!

So – I guess that I left off some critical information (surgeries 15 & 16). As you know, surgery 14 placed a urine bag on me to try to drain my blocked kidney so that I wouldn’t lose it. It is dangerous to have a kidney blocked for a prolonged period of time and so they needed to act fast.

On Wednesday night when I was in the hospital following the surgery, my surgeon came to visit me. While discussing the surgery, he told me that he thought that he could move the bag to an internal system in 2-3 months. I pushed back immediately, asking if there was any way that he could do it sooner than that. After thinking about it for a minute, he said that he could probably do the surgery in a month. My response was that while that timing was better, I would like him to think about it overnight and see if he had an even better response in the morning.

The next morning, when he returned to discharge me, he informed me that he had thought about it and he felt that the surgery could be done the following week.  I was thrilled.

On Thursday, December 19, my bag was removed during surgery #15 and they were able to place a stent in my ureter. Apparently, coming from above was easier than coming from below. They left the tube in my back for another week to ensure that the stent was working. Then, one week later, I went in to get all of the plumbing moved to an internal system just in time for 2014.

And now you’re all caught up with my surgeries. Since I had 5 procedures in one month, I have become quite well known at Stanford’s Interventional Radiology unit. And – to make me completely unique, my dear friends at Genentech gave me my own stylish hospital gown, which is covered with beautiful flowers.  Since I spend so much time in a hospital gown, it’s nice to have a little bit of cheeriness all around me.  Thank you Genentech (heck – these people not only are saving my life but making me look fabulous while doing so)!

This Friday, I will head back down to Stanford for a 2 hour scan so that the radiation oncologist is very clear what’s inside of me and how best to approach my tumors.  The week of the 27^th is most likely when I’ll begin my 10 day radiation treatment. 

So – the cancer adventure continues – but first I need to get through this week since I’m putting on 7 different work events in 3 days… Oy!

Fiducials & Thoughts on 7th Anniversary

I began this blog last Sunday, but never finished it. But – before I go into my thoughts of last week – I’ll give a quick snapshot of last Friday’s adventures.

On Friday, I was scheduled to go to Stanford for them to try putting fiducials into the tumor on my bladder to mark it for radiation. This was going to be no easy task. The tumor was very small, hard to get to and surrounded by bowel.  But – we were going to make a run at putting them in because if we were successful, then I’d be able to proceed with radiation.

There were some hiccups on Friday (I had a UTI) that made us stop and debate whether we should move forward. Having an infection in my system could cause a complication if it were to spread. We decided that we would move forward with the initial scan to see whether he thought that the procedure could even be done successfully. We figured that if he couldn’t do it based on the placement of the tumor, that the discussion regarding the fiducials and the UTI were irrelevant.

So – we moved forward with the scan and the surgeon felt that it was worth trying to place the fiducials. After a significant amount of consults with other surgeons, my surgeon decided that the additional risk of the UTI was not enough to stop us from performing the procedure. And so – we moved forward.

I am thrilled to let you know that IT WORKED! The fiducials are in!

On Friday night, I did have a scare in the middle of the night when I thought that I had a pulmonary embolism or that the infection moved into my chest. I couldn't breathe and I was in extreme pain. After about an hour, I realized that it was just heartburn/acid reflux from the nachos and popcorn that Pat and I had for dinner at the movies earlier that night. (Traffic was so bad in the Bay Area coming back from Stanford that Pat and I stopped off in Oakland to catch a movie and didn't have time to grab a decent meal.) The heartburn/acid reflux seems to have subsided and I'm back to my regular self.  (Note to self – nachos and popcorn are NOT a good idea for dinner.)

The plan going forward is to start radiation in about a week. The plan is to do 10 days in a row (except weekends). We’re doing it slowly with less radiation for each session for a couple of different reasons: 1) so that the tumor doesn’t shrink down too quickly. If the tumor decreases in size too fast, there could be a hole in my bladder that would enable urine to flow into my peritoneum. Thus, they want it to shrink slowly to allow scar tissue to build up as the tumor shrinks. 2) The tumor is surrounded by bowel. They don’t want to blast too high of a dose of radiation through that area that may injure the bowel. Therefore, it looks like I’ll be on the road a lot at the end of January….

As for the drugs – it looks like Dr. Fisher wants to wait for some new trials to open up. He loves PDL-1 for me, but is uncertain if I’ll meet the requirements for going back on it. In the meantime, apparently, PDL-1 in mice has shown that it is in the system months after it has been given. I’m just going to hope that it’s still in my system – helping my body to fight the tumors. Hopefully, the radiation will give my body a little boost, too!

The following was what I began to write last week on the 7^th anniversary of finding out that I had cancer….

 

7 Years

Seven years ago today, I woke up in Des Moines to discover that I had colon cancer.  What a long road it has been. I’ve had so many surgeries (4 in the last few weeks), so much chemo, so much radiation…

Today also marks the day that Gloria Borges, a young vibrant colon cancer patient passed away. This is the third person that I am connected to that passed away from cancer this week. Gloria was so strong, so alive, so motivated. She was a 29 year old associate at a law firm when she discovered that she had cancer. It was dire when she found out about it but she was determined not only to live, but to thrive. Over the past 3 years she became a powerful force in raising awareness and funds for colon cancer research.  She started the WunderGlo Foundation and was a force of nature. I’ve been watching her journey and was so sure that she was going to make it.

I’m devastated. Some days I wonder how long I can outrun this disease. Why does cancer continue to claim lives of vibrant, amazing souls?  Earlier this week, I went to a funeral for yet another friend who died of cancer. And, another young cancer warrior, Andrea Sloan, whose battle I’ve been following closely, also succumbed to cancer this week.

I have realized that almost every single person that I know that has Stage 4 cancer is no longer with us. I pray that I am at the beginning of people living long lives – even if they have this diagnosis.

I will continue to do everything possible to survive. But some days, I’m just so tired.

Later this week, I’ll be going in to Stanford for them to mark a tumor to prep my body for more radiation. Although it is a tough procedure, I feel confident that the amazing surgeons at Stanford will pull this off. 

Today, I’m going to focus on what’s good in my life. We got a new dog – a rescue Maltese/Yorkie. He has brought so much joy to our home. I think I’m going to go and play with him now…