Have I Got a Great Mother's Day Activity for You!!!

As you start to put away your blue streamers after a crazy Colorectal Cancer Awareness Month, it’s now time to think about the next big holiday – Mother’s Day! If you don’t have plans, I’d love you to consider joining me this year for a very exciting event.

 

The Amgen Tour of California professional cycling race kicks off in Sacramento on Sunday, May 11, and I’ll be part of a special walk called the Breakaway Mile to recognize community members involved in the fight against cancer. The walk is led by a “Breakaway from Cancer” Champion, and I was chosen to fill that role in Sacramento.

 

The race starts and finishes in downtown Sacramento so the hospitality tent will be open all day, starting at 9:30 am.  The race begins at 10:50 am and the walk will take place at about 2:00 pm. (It looks like I’ll be giving some sort of speech about that time.) The finish of the race is at approximately 3:30pm.

 

Patients, survivors, family members and advocates for the cause are all welcome.  Not only do you get to walk on the race course with me just prior to the professional finish, you also have access to a spectacular hospitality area near the finish line.

 

It’s going to be a really fun day (apparently, this is one of the biggest bike races in the country).

 

If you want to read more about the race, go to: http://www.amgentourofcalifornia.com. On April 21^st you will be able to register online for the Breakaway Mile (I will remind you then – or you can just let me know that you’d like to be a part of the support team and I’ll work with the organizer to get you registered.)

 

Here’s some info about Breakaway from Cancer (www.breakawayfromcancer.com)

 

I know it’s not until May, but I wanted to put it out there early because it is Mother’s Day. I truly hope that you and your friends/family will come out and spend a fun day at the Amgen Tour with me!

 

And on the cancer journey front – in less than one week I will be back on my wonderful PDL-1. Friday is the day! I can’t wait.

A Tough Day

Yesterday was a tough day. My plan was to meet with Dr. Fisher and then start back on my wonderful PDL-1. But that was not to be.

Apparently, I had a bladder infection. This is my third infection since getting the stent placed in my ureter in December. There is a strict guidance from Genentech that PDL-1 cannot be taken if you have an infection. Their concern is that since we are playing around with the body’s immune system that they don’t want any confusion about what the immune system should be fighting. There is a safety concern and if something was to go wrong, I could jeopardize the entire trial.

Therefore, they have now put me on a high dose antibiotic for 5 days and then I have to wait another 2 weeks after I finish the antibiotic. That’s another 3 week delay. This is not great. Dr. Fisher wasn’t happy, Maria (my new study coordinator) was upset and I was distraught. My treatment had already been delayed because of paperwork and waiting another 3 weeks is excruciating.

But that wasn’t the end of the bad news. It appears that cancer has now spread in the lining in my diaphragm. This is the first real growth that we’ve seen for over a year. One thing that has been in my favor is that the cancer has never spread to the liver or lungs. With it going in the diaphragm, it is much closer to those sites, which truly scares me.

When I pressed Dr. Fisher as to what could be done, he told me that his hands were tied. We had to follow protocol. None of my efforts to charm him into giving me the drug worked. He told me that if I really really wanted, I could go on chemotherapy, but that he truly believed that PDL-1 was the best option for me and urged me to wait.

As I drove teary-eyed the two hours back to my office in Sacramento, it hit me that I was being so ungrateful. I am lucky that I will have access to this amazing treatment. So many others do not have this opportunity. I continue to live a full life. But, it’s hard. The disappointment was crushing. I had my heart set on finally getting back on treatment and I will have to wait while knowing that the cancer is growing.

My girls could tell something was wrong when I was preoccupied last night. They could tell I had heard bad news, but they have faith that everything will be fine – because it always has been. As Ariel was about to go to bed, she opened her arms wide, climbed onto my lap, gave me the longest, biggest hug imaginable and told me that I was the best mom in the whole wide world.

At the end of a really rough day, she knew exactly what I needed. Ok. I’ll wait. It’s just another 3 weeks. I’ll get my PDL-1 and my body will spring back into action. I just need to be a patient patient. Fortunately, I’m up for the challenge.

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….