Mixed Results

Yesterday, I went for my regular CT scan. I figured I wouldn’t hear results from Stanford until I went in for my cancer treatment next Thursday. 

But this morning as I was preparing to take the girls sledding, I looked down at my ringing phone to see Dr. Fisher’s Caller ID. Pat and I braced ourselves for the news…a personal call this soon couldn’t be good.

Two of my tumors have grown, one has stayed the same and one has shown a significant decrease.  Mixed results. And a real bummer for me, because even though one tumor has decreased, no one likes to hear that two other tumors have grown.

Thankfully, instead of just calling with the results, George worked with his colleagues to make sure he was calling with a plan of action.  

First, we’re going to confirm that the tumor growth is actual cancer growth.  As you may recall, last time I was scanned I was told, “Don’t panic if we see growth.” With all of the chaos that the drug causes it can make the tumor appear to grow right before it begins to go away.  My doctors will biopsy the tumor soon to determine if it is actual cancer growth or just inflammation.

If the biopsy shows actual cancer growth, then George plans to radiate the tumor.  They believe combining my experimental therapy with radiation treatment will stimulate my immune system to fight all of the cancer within my body – not just the tumor being radiated.  In fact, two melanoma patients weren’t seeing any results from the immunotherapy drug but then, when radiation was introduced, witnessed miraculous results – the tumors disappeared completely!  While this theory has never been tested on colon cancer, George thinks I can be a pioneer on this front. He hopes we’ll witness the same miracle in my body, with the goal that my case will someday be cited in papers showing the miraculous effect of PDL-1 in combination with radiation – a new hope for patients with colon cancer.

I told George that I choose to look at all of the good news he provided me today:  there are no new tumors, the existing tumors aren’t in any vital organs, my CEA (cancer indicator in my blood) has remained steady, there was an actual decrease in size of one of the tumors (which means that the drug is working), and they are not recommending pulling me off of the study and going back to chemo (which is the greatest news of all).  

As I hung up the phone, I reminded George that I planned to be around for a very long time, so whatever he needs to do to ensure my longevity – I’m all in.   I could hear his smile over the phone.

Following our long talk with George, Pat and I took a deep breath, turned to our children, my sister and her family (we’re vacationing with them) and declared that it was time to go sledding.  Because this is what this whole journey is all about – learning to savor time with our loved ones and live each day to its fullest. 

As I watched all four kids attempt to ride on one sled, laughing and covered with snow, it occurred to me how very lucky I am. For the past five years while I’ve struggled with cancer, I’ve been surrounded by my loving and supportive family, colleagues and friends. If the biopsy shows that the growth is only inflammation, then all is well. To be honest, whatever the biopsy shows, all is well. 

Happy New Year, Everyone.

Nes Gadol Haya Poh

On Friday, I attended the funeral of an amazing woman who passed away in her sleep last Monday morning from a brain tumor.  Tiffanie Kalmbach was the same age as me, born on Ellie and Ariel’s birthday, but in 1967.  We bought our home in Piedmont from Tiffanie and her husband when the girls were only one year old, three years before I too, was diagnosed with cancer.  Tiffanie battled brain cancer for 15 years, and for the last couple of years tried to recover from a stroke, which crippled her entire left side.

She lived her life with dignity, grace, spunk and humor.  At her funeral, it was said many times that she never had a drop of self-pity, deciding instead to fully live and appreciate every day.   As I was listening to the eulogies and the subsequent conversations at her life celebration following the funeral, it kept striking me how incredibly remarkable this woman was.  Although I don’t wallow in self-pity, I have had my moments of anger, sadness and feeling sorry for myself.  That she did not have these emotions was just stunning to me.  She was so brave and so strong.

As I sat through her funeral, my sadness overwhelmed me.  Why was this vibrant woman, so full of life, taken from us and her beautiful family at such an early age?  What is the meaning of it all?  How will her kids fare without her? How long will it be before my family sits at the synagogue mourning my loss?  Will anyone come to my funeral?  (Yes – that concern did go through my mind – much as I’m embarrassed to admit it.)

When I called Pat in tears, he kept saying “Eve, this is not your story.  She fought valiantly for 15 years, but you are going to be around for a lot longer.”  He’s right.  I plan for mine to be a miracle story.

This past year has been a rollercoaster – discovering the growth of the tumor in my spleen, removing the spleen and being told that there was no more cancer to be found, finding out 2 months later that the cancer had grown back and was aggressive and inoperable, then finding out that there was a potential study that I could participate in, then finding out that my tumors had to qualify for the study, then finding out that my tumors did qualify for the study and, most recently finding out that the study seems to be working.

Throughout Chanukah, as we danced the hora, sang Chanukah songs, ate latkes and opened presents, the dreidel game was particularly poignant.  The letters on the side of the dreidel: Nun, Gimel, Hei, Shin – stand for Nes Gadol Haya Sham – “A great miracle happened there (Israel).”   However, in Israel, instead of a Shin, the dreidles have the letter Pei for the word “Poh” meaning “here” – since the great miracle (the oil lasting for 8 days instead of 1 day) happened in the land of Israel.

On one of the nights of Chanukah, as a dear friend was leaving my home after having celebrated with us, she turned to me and said, “Eve – Nes Gadol Haya Poh.”  Because, indeed, with me continuing to live my life at warp speed, with my body finally returning to its pre-chemo days and with the study appearing to keep the cancer in check – a great miracle has happened here.

I hope that you all have had, and will continue to have, a wonderful holiday season – full of light, love and plenty of "Nessim" (miracles) in your own lives.

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.