Boy - Do I Feel Thankful

I was sure that the tumors had grown.  I didn’t share this fear in my last post, because I didn’t want to worry anyone.  But I was sure that the cancer had grown. 

Over the past week, I’ve been short of breath and have felt pressure on my bladder (I have a tumor there).  The shortness of breath reminded me of the time, exactly three years ago, when I left my family Thanksgiving to check into the hospital in Palm Springs. I was short of breath and thought I was having a heart attack.

Instead, they discovered cancer in my ovary.  A recurrence of the cancer that I thought I was beating…but now it had metastasized into stage IV. As you can imagine, this is a particularly fraught anniversary for me.

As I was once again short of breath, I felt doomed. Surely a new cancer had popped up or my current tumors had grown.  There was no doubt in my mind that yesterday was going to be a very bad day – a day that would change my life – forcing me back into chemo and possibly even into surgery.

Thankfully, I was wrong (I don’t often like to say that sentence but today, I’m happy to!). Yesterday morning, Pat and I were down at Stanford at the crack of dawn getting my CT scan. Upon finishing my CT, I headed over to Stanford to meet with George Fisher (my new doctor is in Japan this week so George agreed to meet with me.  I later found out that he came in only to meet with me – he wasn’t scheduled to work that day.  Just one more reason why I love George).

When I arrived, the study coordinator, Rebecca, greeted me with a fancy cupcake for my birthday.  Did I mention how incredibly wonderful the Stanford team is?  George then came in and gave me the news that I had been praying for, but didn’t believe that I would receive….the PDL-1 drug was working! My tumors were staying in check and there was no sign of additional tumors popping up.  Therefore, we could proceed with giving me another dose of PDL-1 with the next CT scan scheduled for 6 weeks from now.

After I learned that my tumors hadn’t grown, I called my sister Miriam who was watching our kids to let her know the good news.  Following the call, she went to tell my girls the news.  Here was the conversation…

Miriam - “Girls,  I have great news for you!  I just got a call that the new cancer treatment for your mom is WORKING!  She got her scan this morning and her tumors haven’t grown.  Isn’t that wonderful for our family?”

“Auntie Miriam, it’s not great news just for our family, it’s great news for the whole world,” replied Ellie.  “Because now there may be a cure for cancer.”

Unfortunately, PDL-1 is not being talked about as a cure, but it is being hailed as a drug that can bring long-term remission.  George said that he was happy with keeping the tumors from growing – he considers that success.  None of my tumors are in a location of concern (lungs, liver etc.) and so they can continue to hang out in my gut for years….they just can’t grow.  I can live with that (literally).

I can now breathe for a few more weeks.  Unfortunately, speaking of breathing, while we now know that my shortness of breath isn’t due to cancer or pulmonary embolism (that was a possibility as well), I will be getting a stress test next week to figure out the cause.  It’s funny - while others may be completely upset about a potential heart issue,  for me it was a huge relief that it wasn’t cancer. 

Today, on this day of Thanksgiving, I am feeling more grateful than ever.  I was thinking about my visit yesterday to Stanford.  While I was there, various staff that I have worked with over the years – Dr. Rhoades and Dr. Chu, along with Margreet and James (the guy who works on our paperwork and setting up the rooms) heard that I was there for a visit with George and came in to see me and give me a hug.  That is one amazing place.  Their love and compassion coupled with their incredible brilliance is an incredible combination. If you’re going to get cancer, these are the people that you want by your side.

But, those aren’t the only people that have enabled me to thrive.  It’s all of you - my family, friends, even those of you who I don’t know but send me lovely notes, who make this journey bearable.  I am so very grateful to all of you.  It is your collective strength, prayers, and positive energy that have enabled me to reach this day.

Thank you for being there for me and my family.   As we go around our dinner table today telling the others what we’re grateful for, my list will be long.  But – on the top of that list will be you, my community, you are what I am most grateful for.

I hope you and yours have a very happy Thanksgiving.

Number 45

According to the statistics, I probably shouldn’t be here to celebrate.  But here I am, and overall I’m feeling better than I have in years. When people ask, “How ARE you, Eve?” (in that pseudo-hopeful voice tinged with dread), I feel lucky to say how great it feels NOT to be on chemo. It has been an amazing break for my body.  I’m getting my hands, feet and brain back.  Hallelujah.  But, on the flip side, I have no idea if the treatment is working. 

On Tuesday, which incidentally is my 45^th birthday, I’ll be going in for my CT scan to see what’s going on inside.  If the tumors are the same size or smaller, they’ll proceed and give me my next dosage of PDL-1 on Wednesday.  If the tumors are larger, they’ll stop treatment for a month and then do another CT in about a month to see what’s going on. 

When they told me this plan, I told them I already knew the results – the cancer tumors would grow.  But Holbrooke corrected me.  Apparently, the drug that I’m on can cause the tumors to grow…right before they are destroyed by the treatment.  Bottom line – I shouldn’t panic if my tumors are larger.  It may actually be a good sign.  Still – between us, I’m really hoping that the tumors are getting smaller….

It has been nearly 5 years since I started my cancer journey.  5 very long years.  Just the other day, I realized that the girls have spent more of their lives with cancer than without.  I doubt that they can even remember the pre-cancer days.

I really really miss those days.  Days when I panicked if the girls weren’t in bed at their exact bedtime.  Days when I would be so concerned if I didn’t wear the right outfit for the right event.  Days when it never crossed my mind that I may not be around to see my children grow up or meet my grandchildren.

I pray that this treatment is working, that the killer cells are busily locating cancer cells and destroying them.  I so want to be around to celebrate not just one more but many more birthdays.  Bring on the gray hair, creaky bones and saggy skin…

There They Go Again!

As you know, when I froze my head with the Penguin Cold Caps to save my hair during chemo, I had the great fortune to not only meet but also to build a marvelous relationship with the amazing folks at Kenra (makers of fabulous hair products).  Over the past couple of years, Kenra has partnered with the Rapunzel Project to raise funds to help cancer patients save their hair during chemotherapy.

As if that effort wasn't enough - Kenra decided to take it to the streets.  Tomorrow, Kenra representatives Amber and Rebecca will begin their 3-day Susan G. Komen walk in Tampa to raise money for breast cancer research and community programs.

These phenomenal women wrote me recently to let me know that they decided to name their team "Team Eve."  I am so very honored that I'm able to be there in spirit as part of their effort to raise funds to fight this disease.  Although I couldn't imagine taking a 3-day walk, I can help their efforts by urging you to support Team Eve.  To give, go to:http://bit.ly/TdxGD8 and just click on one of their names.

What a great way to celebrate Breast Cancer Awareness Month!  Hopefully, through efforts such as these, we will soon be celebrating Breast Cancer Eradication Month!

The First Day of the Rest of My Life

The day finally arrived.   We were going to begin the experimental treatment that promised long-term remission.  On Thursday, my mom (in town for a visit) and I headed down to Stanford to embark on this new journey.  

We arrived at 9:45 am at the Stanford Clinical Trials Building, eager to begin.  After checking in and hugging everyone, they sat me down for the first step – the blood draw.  My fabulous nurse, Cindy, started pulling out vial after vial for my blood.  (Big apologies for those of you who are squeamish about these things.)  She turned to me and said “wow – I rarely see a study that asks for this many vials.  The nurses were concerned about my blood pressure, but chalked it up to nervousness.

Rebecca (the trial coordinator for Dr. Kohrt) then walked me over to the Cancer Center to meet with my new BFF Dr. Kohrt, so that he could answer any last questions and get final sign-off to start.   I was initially most interested in finding out what they saw in the CT scans.   How many tumors were still in me?  Did they grow? Were there new tumors? The good news and the bad news is that I still had the same 5 tumors from June.  They had grown a little, but there were no new tumors.  This meant that the chemo that I was on had been able to keep my tumors in check.  But, of course, it also meant that the dosage that I was on was not able to kill them.   He was pleased that the tumors were still small, yet I had enough for Genentech to let me participate in the study. 

I then asked him the biggest question of all - “what have been the results for others thus far?”  His answer – “the results have been dramatic.”  Dramatic?  Did he actually use that word?  I repeated it back to him, just to make sure that I had heard him correctly.  That's about the best word that anyone who is undergoing any treatment would want to hear.

Alas, my blood pressure continued to be too high for anyone to feel comfortable giving me an infusion.  Several hours of continual testing did nothing but raise my stress. I was getting desperate, because this meant I would have to come back to start treatment another day.

They then came up with a new solution to try to drop my blood pressure – they placed a double dosage of Ativan under my tongue and Dr. Kohrt convinced Genentech to let me go forward with the infusion. The day had been quite an ordeal, but by the time Stanford closed for the evening, I had received my first infusion.  Success!

And how am I feeling now?  FANTASTIC!  It has been nearly a month since I took my last chemo pill.  I can feel my hands, feet and brain returning to normal.  It’s a wonderful feeling not having poison coursing through my body.  There are no side effects to my PDL-1 treatment.  Let me repeat that….THERE ARE NO SIDE EFFECTS. 

In about 6 weeks we should know if the PDL-1 drug is working for me.  I have every confidence that the tests will show that it is.   I feel like I’m getting my life back.  It has been such a long road.  It’s been nearly 5 years since I was first diagnosed.  I have learned so much and I believe that I am a better person for having gone through this journey.  But I am ready to be done with cancer.  I am ready to reclaim my health and my life.

And Off We Go!

I’m thrilled to let you know that they found enough tumor growth in my scans to move forward with the study.  How bizarre is it that I’m happy having tumor growth.  I don’t know how much or where the tumor(s) are, since we have been texting back and forth, but I’m sure that I’ll find out on Thursday.

Why Thursday?  Because THAT IS THE DAY THAT I START THE STUDY!!!  Yes - it's finally happening.  After almost 5 months, multiple tests and a lot of back and forth between Stanford and Genentech, we're on our way.

So - in just a a day or so - I'll be meeting the team at 10 am for lab work and then will head over to meet with the amazing Dr. Kohrt to start the drip.  Thursday's appointment will last about 4 hours, but they expect that going forward, they'll be able to shorten the infusion time.

I am so ready to begin this new journey.  I truly believe that I am pioneer in this new world of immunotherapy.  My prayer is that this study will result in thousands of lives being prolonged or even saved (including mine).

Let the adventure begin!