Bag Lady

I’ve let a long time pass once again since writing to all of you. So much has happened in the world and so much has happened in my life. It becomes overwhelming to try to sit down to write. But – I’ve put it off long enough…

As you know, the election did not go as I was hoping. This has been tough on our whole family. We were all very invested in Hillary. Her compassion for our family, alone, was plenty for us but knowing that she had that same compassion for millions throughout the US, well, that’s who we wanted to see in the White House.

Fortunately, in the midst of our sadness, we received two lovely letters from President Obama. 

These beautiful words congratulating the girls for their work on their b’not mitzvah coupled with his words showing his dedication to the eradication of cancer warmed my heart and helped me become inspired once again.

As for me, I’ve had a rough go lately. I now have 2 additional bags attached to tubes on my kidneys. They don’t know why my body is unable to urinate normally. They can’t see anything obvious on my scans that would cause this trouble. This is distressing because it means that they don’t know how to fix it. And – if we can’t fix it, then I’m looking at a life with 3 bags attached to me (I still have my ostomy bag). I am pretty distraught about this. I know that I’m supposed to look at the big picture – keep my eye on the prize of keeping cancer in check – but it’s not that easy. I also continue to struggle with a lot of pain and, about a week ago, I was in the hospital because I had a serious infection. I was able to go home after 5 days with IV antibiotics, but it was still very scary. I just pray that the infection doesn’t come back again anytime soon!

I am still on my immunotherapy trial (in fact, I’ll be heading back down to Stanford later this evening). My next scan isn’t for a month or so. (The last scan showed that my tumors were stable! I am having some of the best results of all of the study participants.) Hopefully, my body is fighting away, ridding itself of this horrible disease!

In the meantime, I am going to try to get someone to figure out what is going on with this bag situation. Both urology and interventional radiology claim that everything in their purview is just fine. (Obviously, something is not fine!!) Hopefully, I will get to the bottom of this very soon – since I do not want to be a bag lady!!

Looking back on this blog, it seems a little depressing. That was not my goal. I was simply trying to update you on the latest activities, which ended up being quite challenging. At the end of the day, the most important thing is that my tumors are staying stable and that I continue to lead a full and vibrant life.

Whether it’s cancer, bags or pain – I will get through it. Heck – I have a lot of living to do. We’re planning to go skiing, to a bat mitzvah in Santa Barbara and so many other adventures. Yesterday, the girls and I marched in Sacramento, knowing that marches were taking place all over the world. I was marching! And – I will continue to march and defy the odds.

I passed the 9 year mark and am heading on to year 10 since being diagnosed. Pretty amazing, huh? I told my oncologists that while they’ve done well so far, I expect to be around for the next 9 years!

I hope that all is well for you. Thank you for continuing to keep me and my family in your prayers. Your strength helps us be our best selves and provides us with the will to continue on this difficult cancer journey.

May 2017 be a year full of joy, laughter and health!

THE BIG UPDATE

It has been so long since I’ve written. And – of course, the longer it goes, the more I have to say and then I’m too intimidated to even begin.

But – enough is enough. I will not go into the details as to what’s been going on – but rather just hit the highlights – so that at least you have a snapshot of my life.

HIT MY GOAL

As many of you know, since being diagnosed 8 ½ years ago, one of my main goals was to see the girls become a bat mitzvah. The likelihood that that would happen was slim, at best. But – I kept telling myself that I was going to be there for that important milestone. And I did it. I laughed harder than I’ve laughed in so long, I danced, I was surrounded by so many loving amazing people. I had my village with me – those of you who helped me through some very very difficult days. I have never been so proud of the girls. They were magnificent (of course, I’m not biased at all!)

After the guests left and the celebration was over, a sadness overtook me. I realized that I had achieved the goal that had been there for more than 8 years. My body started feeling like it was shutting down. Pain began to overwhelm me and it felt like my tumors had started to grow.

I then decided that it’s time to make a new goal.

IMMUNOTHERAPY TRIAL – PHASE 1

Fortunately, right around then, I got the call that I had been hoping for. After two years of waiting, Dr. Fisher finally had room in a Stanford immunotherapy trial for me. Because it’s a 

the side effects will be. These are unchartered waters. However, I’m no stranger to being a guinea pig, so I told them to sign me up. The biggest pain with this trial is that it requires me to go down to Stanford for treatment at least once a week – which is an awful lot of driving!

I have now been on the trial for two months. Just once week ago, I received “the call.” Following every scan and every test, I’m on edge waiting to find out what’s going on in my body. Will my life now take a whole new direction? But – the news was good. My latest CT scan showed that my tumors had either decreased in size or stayed stable! IT IS WORKING!!!

Although this is fantastic (and surprising) news, the last few months have not been easy on me physically. My bladder fistula continues to get worse, causing constant incontinence. I may soon be looking at a permanent urine bag. The idea of having 2 bags is a huge bummer, but I think it’s a tradeoff I may need to make.

I am also dealing once again with a serious infection – similar to the one that I had last spring. Fortunately, it was caught before I had to go to the hospital, so we were able to work out a system for me to give myself a daily infusion of antibiotics into my port. The goal is that after 14 days we’ll have scared this infection away – for good!

If I can kick this infection out of my body and stay on this trial – then life is great. Of course, I still have to schlep down to Stanford every week for my trial. But – that’s a small price to pay to be able to remain a part of this wonderful world.

THE SECRETARY

As you may recall, Secretary Clinton is a very important part of my cancer story. I was first diagnosed with cancer when I went to volunteer for her during the Iowa primary in 2008. Over the past 8 ½ years, I have had too many ups and downs to remember.

I have also had the opportunity to meet Secretary Clinton in various locations over the past few years. This year, I went back to the Iowa Caucus to watch her WIN it this time. I stayed with my wonderful friends, the Mandelbaums, who took care of me and Pat when I first became ill. While I was there, Secretary Clinton found out I was in town and her staff arranged for me to see her. It was a huge thrill. She was so gracious and spent a considerable amount of time finding out all about what was going on in my life. 

In addition, I got to see my wonderful Iowan oncologist, Dr. Morton, while I was there. He was the genius who connected me with Dr. Fisher at the beginning of my journey. There is no doubt in my mind that if I had any other oncologist, I would not be here right now. So – once again, thank you Dr. Morton. (On a quick side note – Dr. Morton and I have become texting buddies during the presidential debates. He’s a huge Hillary fan!)

Then, at the end of July, I had the opportunity to go to the Democratic National Convention as a guest of one of my wonderful biotech companies. Again, while I was there, I got an email from Secretary Clinton’s staff letting me know that they heard I was in Philly and she was wondering if I could meet with her while I was there. Fortunately, my amazing boss and CEO let me stay through Friday so that I could meet with her. Directly following her rally in Philadelphia (the day after her acceptance speech), I was brought back to meet with Secretary Clinton and Senator Kaine. When Secretary Clinton asked what was going on with me and the girls, I told her that it was Bat Mitzvah central at my home, since both of my girls would become b’not mitzvahs in less than a month.

She then asked me if it would be ok for her to write them a letter of congratulations since she knows what a huge milestone that is for a Jewish woman. Without hesitation, I replied that of course they’d love it. I was thrown off that she had offered to do something like this. Such a kind and thoughtful offer. And – it’s not like she didn’t have a little election looming….

Amazingly, she followed through! She sent the girls a lovely letter for their b’not mitzvah.The girls were overjoyed to receive the letter. That’s certainly not your average b’not mitzvah gift!

I was so grateful, that I sent her a note thanking her for doing this and telling her how much it meant to me. I also expressed that since I had reached the important goal of attending my girls'b'not mitzvah, I was now going to have to come up with new goals to inspire me to continue living.  I have decided that for the short term – my goal is to live long enough to see the first woman be elected President and for the long term - my goal is to see my daughters graduate from high school and go on to college.

Not expecting any response, I was completely overwhelmed when I received a beautiful letter of response from the Secretary a couple of weeks later. There was absolutely no political reason for her to have sent me this letter. I am not wealthy, I do not control lots of money that can be given to her, I do not run a labor union, heck, I don’t even live in a swing state. I bring nothing to the table. The only reason that she wrote these letters is because she is a good, caring and loving person.

Here is what she wrote:

That is who I want to be my President. I haven’t brought up politics very often on this blog because it truly was supposed to be about my cancer journey. But – because this is where my cancer journey and politics intersects, I feel the need, moreover, I feel the obligation to let everyone know how good she has been to this cancer patient. She has helped give me the will to power on.

I now have tubes and bags coming out of places all over my body. My left kidney is probably dead, my right kidney is filled with a life-threatening infection, my two fistulas are wreaking havoc with my body – but I’m here. I’m strong. I’m fighting for my life. I don’t know why I’m still alive while others have passed. But, because I’m here, I feel like it is my duty to do what I can to make the world a better place. Electing Secretary Clinton as the next President will make the world better. She brings kindness, compassion and a deep sense of humanity to the office.

This is the world that I want for my children. This is the world that I want for me. My plan is to stay around for a little longer and with your help, I will be able to hit my next critical life goals.

Hope you all are having a wonderful weekend and don’t forget to vote on Tuesday!

The Girl's Got Grit

Three days ago, Eve started worrying about her email inbox. So she picked up her phone to reply to some particularly urgent messages. After 10 minutes of studied concentration, she had written the word "So."

This is, as you may have guessed, a guest blog post. Because of the aforementioned struggle with crafting coherent phrases. I insisted on writing this to ease her stress about updating all of you.

I'm Miriam, Eve sister. I've been hanging with her for the last few days at Stanford Hospital. Which is amazing. The staff is unbelievable. The facilities are lovely. And they serve up a good house-made veggie burger. But this isn't about the hospital. It's about Eve. I get it.

But before I get into it though, just a quick shout out to her husband Pat, who was here all last week with her, arriving at the hospital at 7 AM and leaving at 10 PM or later. He would've stayed the weekend too had it not been for his commitment to go on a long-planned camp out with the girls. Pat, you have my immense respect and Eve's "I would be literally dead without you" gratitude. You are truly a menschy husband.

Onward!

So here's the latest on Eve. Those of you who are following her posts on Facebook know that she was admitted to the hospital in a seriously dire situation. She had an undetected abscess -- causing a life threatening infection -- that was caused by fluid leaking out of her kidney stent. She was in more and more pain and no one could figure out why. It took an ultrasound to detect the abscess which was underneath a muscle. When they finally got at it, there was enough pus to fill a grande cup from Starbucks.

Eve was admitted to the ER and they got to work on her immediately. They started pounding the infection with the heaviest antibiotics they could get their hands on and inserted the drains. But when she was finally stable, she was trapped in the ER. They could not find a bed in the main hospital for five full days.

Ask her to tell you the funny story about the roommate with night terrors who practically gave Eve a heart attack her first night. Or about the other roommate whose relatives came in at 2:30 in the morning, blithely flipped on the lights, and sat there all night. Or the one who made hacking sounds… continually… that are impossible to describe. Just think of the worst combination of hacking and clearing your throat that you can think of. Now make that 10 times worse. But I should not go into too much detail. You should instead ask Eve to tell you about those roommates, because telling the story will make her laugh. And she could always use a laugh. Fortunately, the nurses have moved her to a new room and have given her a quiet roommate for her last two nights.

On Memorial Day Eve plans to be discharged. They were able to get rid of most of the abscess, start another drain that's getting her bad kidney working again, give her intravenous antibiotics (because that's the only thing that can fight the E. coli at this point), and finally get her in that quiet room where she can rest. Her fever is down but the sepsis has made her very very swollen. She is good enough to leave but will have to go home with the drains still attached to her and antibiotics feeding into the port in her chest.

I look at her situation -- the drains, the pain, the tumors, the ostomy bag, the enormous swollen extremities, the chemo, the incontinence, the failing kidney, the infections, the 27+ surgeries -- and I can't believe she's able to smile and laugh as much as she does. This woman has a huge heart and a lot of grit. She just powers through it. I know she can't say these things to you because she would look like she's totally bragging. But I can because I'm her sister and I think she's marvelous.

So here's hoping she's indeed released on Monday back into the world. She needs some sun and some joy and to be loved up by her husband and daughters. And of course she always needs your prayers.

Have a wonderful and peaceful Memorial Day, Friends of Eve.

Your guest blogger,

Miriam

PS This is Eve. As you will note, my sister Miriam did not cover anything that has been going on for the last several months. There have been many ups and downs and every time I sat down to write this, I was so overwhelmed with the amount that I had to write that I'd just give up and walk away from the computer. 

However, a couple of highlights that I wanted to let you know about was that I was able to go back to the Iowa Caucus this year and complete my journey by participating in the Caucus festivities. I spent a lot of time with my friends the Mandelbaums who i met in 2008. I also get a wonderful visit with my original oncologist from Iowa, Rocky Morton. And a HUGE highlight was getting to spend time with Secretary Clinton. She found out that I was going to be in town and asked her staff to arrange for her to see me while I was there. What a thrill!

Other stuff that happened included lots of ups and downs with my health. If you're interested in learning more about that, just let me know. I'm too tired to write any more today. It looks like I won't be breaking out of Stanford until tomorrow,, but that's ok. I will be getting in-home IV antibiotics daily for the next 3 weeks. Hopefully, that can help kick this infection out of my system for good!

A big thank you to Miriam for just sitting down and writing my blog knowing that I was having trouble doing it. It's a little to generous to me, but I've decided just to leave in her nice words. You don't get a chance to see such night things written about you by you sister everyday - so I'm going to memorialize it!

I hope that you all have a magnificent Memorial Day!

My Docs

So, tonight I was going to send out a blog post about my recent trip to Iowa for the Iowa Caucus, but unfortunately, I received news today that trumps that post. Therefore, this post will be about losing my wonderful oncologists and what a huge blow that is to cancer patients.

Dr. Holbrook Kohrt Passed Away This Morning

 

Late this afternoon, I received the devastating news that my wonderful Dr. Kohrt, who ran my PDL-1 trial for 3 years, passed away while receiving treatment in Europe for his hemophilia. I'm pretty sure that I've talked about Dr. Kohrt before. He was not only an outstanding patient based doctor and researcher, but he was a true friend to me. When I was feeling low, he would write me the most amazing emails to get my spirits up. He reminded me on a regular basis that I was stronger than cancer and that he expected to see me live for many years to come. I could always count on him to say the right thing and leave me laughing or relaxed or whatever I needed at that moment. I am deeply deeply saddened right now.

The following information was sent out internally at Stanford today:

Holbrook had been battling hemophilia all of his life, and in recent years had become resistant to standard Factor VIII therapy. He had been on investigational therapy for his disease, but suffered an intracranial hemorrhage while vacationing in the Caribbean, and was transferred to Miami, where he died.

Holbrook was, by everyone's estimation, one of the most brilliant translational researchers of his generation, and was poised to make great contributions to the conquest of cancer. His novel cancer immunotherapy preclinical work led directly to the development of clinical trials that may transform the care of cancer patients. His loss is a personal one for those of us who knew him, but also a real loss for cancer patients everywhere.

I am so devastated right now. I lost not only a great doctor but a dear friend. RIP, my amazing Dr. Holbrook Kohrt.

 

Dr. Semrad Is Leaving

And I'm losing another one - but fortunately, he'll still be around so that I can find him! As you know, I have been working with UC Davis Cancer Center to get my chemo doses every 2 weeks so that I am not forced to go down to Stanford for treatment every other week. That would have been a tremendous inconvenience to get drugs that I could get 20 minutes away from my home. Dr. Fisher still oversees my care, but Dr. Tom Semrad is my day to day contact. I adore him. When I first saw him at the cancer center he told me that he had seen me speak and was fascinated by my cancer – how it responds to treatment etc. He wishes he knew why it acts so differently than other colorectal cancers.

When I saw him a couple of weeks ago, he sat down and told me that he needed to talk to me about something – and then he sprung it on me: he’s moving to Tahoe to build a big cancer center there. It’s a tremendous opportunity to run a cancer center in a beautiful location. It will also allow him and his wife (who is also a doctor) a chance to slow down a little bit and enjoy their lives more. Perhaps after seeing so many cancer patients question how they spent their lives, it has made him step back and assess his. The biggest problem in my mind (besides the fact that he will no longer be MY doctor!) is that he will no longer be associated with a research center, so his research will be minimal. That is a huge loss. I hate to see a great mind like that step away from research.

I respect his priorities. I respect his desire to achieve a better work-life balance while he’s young. I’m happy for him. Not so happy for me. I respect his need to move and will miss him so very much.

New Numbers, Collateral Damage, Surgery (Again!) and Chemo Fun!

It has been so very long since I’ve written and so much has happened. I’m going to divide this up into multiple sections that have very little to do with each other except for they are all part of my cancer journey. To get you up to speed, I originally I wrote about many issues for this blog post. But, after realizing that it was just too darn much, I decided to break it apart and provide this info to you throughout the week. Hopefully, in the future, I will be more on top of things and will keep you all better informed about what is going on with me. But for today, I’ll start with the most exciting news…

My Numbers Are Dropping!

Although I really really really hate this new chemo regimen, I’ve gotta give it to the docs – they know what they’re doing. My CEA number (which is found in my blood work) has been a very strong indicator of cancer growth in my body. The normal person’s number is generally below 5. For years I would go up and down, but never went over 13 (I remember panicking when it hit 13). Unfortunately for a few years now, my number has been steadily rising. In fact, it was due to the fact that the number continued to increase (even though there was no indication of additional cancer growth on my CT scans) that Dr. Fisher ended up taking me off of my amazing Genentech PDL1 immunotherapy and back on chemo.

Last November, right before I began my current chemo protocol, my CEA had reached a high mark of 227. Then, in December, we saw the number drop to 149 and in January my number dropped again down to 59! Today, I received .the next piece of incredible news. My CEA that was measured just yesterday dropped to 28!! This is a dramatic drop and far greater results than we were expecting.

I feel mixed about what we’re doing. Of course, the number dropping is great news. However, it means that no one is interested in taking me off of this regimen and trying something new. I keep trying to convince Dr. Fisher to let me try another immunotherapy, but so far he seems unwilling to walk away from what we’re currently doing as long as I can continue to do well on the protocol. It’s really rough though. 3 different types of chemo over 3 days every two weeks with cold caps and all of the side effects that accompany the regimen are brutal. It would be easier to handle if I knew that there was an end in sight. Unfortunately, no one is willing to tell me that I will be changing anything in near or distant future.

Chemo’s Collateral Damage – Bladder and Hair

As the chemo continues to shrink the tumors in my bladder wall, holes continue to be created or have gotten larger. Furthermore, the bladder fistula has not gotten any better. Because of this, I have to plan constantly to be able to avoid having an accident. I put my mom in charge of trying to find out if there are any places in the world that are experimenting with putting in a man-created bladder (or even some sort of sheep bladder etc.). Unfortunately, she had trouble finding anything for me. And – even if there was something, according to my uro-oncologist said that it still would be very very difficult and fraught with all kinds of risks. The only thing that they can do to make my situation better would be to remove all of my internal organs and reroute things so that my urine would flow from a urostomy into yet another bag. I would be a two bag lady. Ugh. He told me that as long as I can function with my body parts as they currently are, that he would strongly recommend that I leave things as is. There are just too many potential dangers that crop up if I decide to move forward with this extensive surgery.

As for my hair, as you know from many earlier posts, I am a HUGE fan of trying to save your hair during chemo utilizing the Penguin Cold Caps. Frank Fronda, the amazing inventor of the cold caps and founder of Penguin Cold Caps has been generously working with me this time to save my hair. Unfortunately, as you may recall, I was overdosed with chemo during my first round back in November. I was extremely ill and haven’t felt that bad for years and years. I believe that one of the casualties from that first round was my hair. Both times that I was about to begin taking irinotecan (several years ago and last November) I was warned that most patients have an issue with hair thinning. Fortunately, when I did this rough drug several years ago, I saw almost no hair thinning and, in fact, thought that my hair actually seemed fuller coming out of the whole thing.

This time I wasn’t so lucky. As I just mentioned, my hair did not weather the extra chemo dose well. I believe that the heavy dose killed all of the follicles that were in my scalp at the time and that the hair that was on my head at that point has been slowly falling out over the past 4 months. Fortunately, because I continue to use Penguin Cold Caps, I have seen hair growth for new hair coming in. But it’s going to be slow.

How much have I lost? Well – it’s far beyond just some thinning. I’ve lost at least ¾ of the hair on my head. I can’t believe it. I’ve never had super super thin hair before. It got to the point where you could see right through my hair around my neck to whatever was behind me. I looked like a drug addict.  Not a pretty sight.

This past week, I finally came to the point that I couldn’t look at myself in the mirror anymore. I felt so ugly and looked so ill. My hair has always been such an important part of who I am. I’ve always had thick, long hair. Who was this person staring back at me in the mirror?

Many people said that they barely noticed anything at all. Pat finally looked at me and said “Eve, whoever is telling you that it’s barely noticeable and that you look pretty much just the same, is lying to you. It is now time for you to cut off your hair.”

After hearing my despair, my wonderful hairdresser moved around her entire calendar so that she could see me yesterday to see what she could do. I told her that we could try to cut it, but my plan was also to go wig shopping in case we just couldn’t come up with a style that would work for me.

I am thrilled to say that she figured out a way for me to delay the inevitable wig for a little while longer. I am now sporting a short straight bob. I’ve never had short hair before. It’s so strange. But, I’m relieved. I no longer look like a drug addict – I just look like a woman with short, thin hair. The girls actually like the cut, but said that it makes me look short. I can handle this. I just hope that my hair is close to the point where it stops coming out.

Following my haircut, I did go to the wig salon to see what my options would be if my hair continues to fall out. And they weren’t too bad. I could actually see myself in several of the wigs there. They were quite lovely. My goal will be to try to maneuver quickly to a wig that looks like my real hair if I continue to see significant hair loss.

Pat and I are continuing to use the Penguin Cold Caps with the hope that it will help the hair that I have now both stay in and grow!  (I actually wore them for 6 hours today – it’s so very cold.) I am also using a new shampoo/conditioner called FAST which is supposed to stimulate quick hair growth.

Fingers crossed that the hair loss is only a short lived experience and that I will soon begin to look like me once again.

 Surgery 20 something

Last Wednesday, I had surgery number 26 or 27 (I’ve lost count). Fortunately, the surgery wasn’t a difficult one. We just had to change the stent in my left ureter. Apparently, there was some calcification on the stent that made it difficult to remove. Other than that, the surgery went very smoothly. In fact, I was out skiing last Friday, just 2 days following surgery!

My surgeon, Dr. Chung, just asked if I would plan to come in every 3 month rather than wait 5 months to change it out. That’s easy enough. Of course, I am a little concerned about how often I’ve used anesthesia. Isn’t it bad to do it too often????

Back to Chemo

We’re back to chemo week. Last night, Pat picked up the dry ice and then first thing this morning we were off to UC Davis to begin my week of chemo fun. Today I was given Irinotecan and we used Penguin Cold Caps for 6 hours. As I left UC Davis, they hooked me up to my pump full of 5FU and then after 2 days I’ll return on Thursday for some Vectibix fun.

 

Stay tuned and check back in! More fun information coming this week!

2016 - Here I Come!!

It’s finally 2016. I have really been looking forward to this day. 2015 was a really really rough year. I had a few surgeries (including getting a permanent ostomy), I had to leave my wonderful Genentech PDL1 study and go back on chemo (which has resulted in me being quite ill, losing a lot of hair and sporting a fabulous rash among other things), we ended up finding not just a fistula in my rectum, but also one in my bladder and my lowered immunity has resulted in E. coli colonizing my body. But I’m getting ahead of myself.

I apologize for taking so long to get you all up to speed. My life has been chaotic over the past two months – unfortunately many things didn’t go so well physically. That is why I can’t wait to start a new year!

So – I did end up getting my three-part chemo cocktail – irinotecan, 5FU and Vectibix. Several days in I was still nauseated, and instead of abating, it kept getting worse. I was far from my medical team, as less than a week after chemo I had jumped on a flight for a work event in Hawaii.  

I couldn’t leave my room and missed part of my conference, which caused my colleagues to worry…they know how I hate missing anything. After my oncology doctors expressed concern at my condition, my wonderful friend (shout out to Jen Fitzgerald!) brought me to the Urgent Care Center near our hotel in Maui. We discovered that the stomach pain and nausea weren’t the chemo -- I had E. coli. This is not the E. coli you can get rid of easily with an antibiotic. This E. coli had “colonized” my body. They’re not sure that there even is an antibiotic that could effectively go after this E. coli because it is so strong. For now, I’m stuck with E. coli permanently in my system, so I must be vigilant not to get an infection. Therefore, I carry a thermometer in my purse at all times to make sure that I don’t have a fever. If I get an infection and it moves into my blood, that can be very serious.

Because my oncologist was very worried about my reaction in Hawaii, he cancelled my next infusion altogether. Then, he only had me take Vectibix for the past month (this is the drug that causes my face to break out in a rash. But – to be honest, the rash hasn’t been nearly as awful as I thought it would be).

Again, I should try not to get ahead of myself. We got home from Hawaii, I continued to get ill for quite some time. (I took Irinotecan several years ago, but didn't have any of these extreme problems.) Scarily, the following week, I was responsible for putting on my biggest conference of the year in Napa – with 17 legislators!

The conference was to begin mid-day on Thursday, Dec. 3^rd. On Wednesday, I had noticed that my left foot was swollen. But – I chalked that up to being excessively on my feet and ignored it. On Thursday afternoon, my left ankle and foot were very puffed out. My Davis oncologist, Dr. Thomas Semrad, happened to call that afternoon to follow up with my about my E.coli. While he was on the phone, I took that moment to ask him if I should be concerned about the swelling. After talking to me for all of one minute, he told me to go to the nearest hospital and get a vascular ultrasound. I begged him to let me wait until the following day, but apparently he was concerned that this was the sign of a blood clot. And – if it was a blood clot and it broke off and went to one of my lungs, it could be fatal.

So I left the conference. My conference. To go to the hospital in Napa (a big shout out to Mike Carpenter for taking me to the hospital!). I was very lucky that the hospital wasn’t crazy busy and everyone at the hospital knew that I needed to get out of there quickly to get back to my conference if at all possible. Amazingly, we got the ultrasound done (they determined that I have an artery pushing down on a vein that is restricting liquid flow) and I was back at my conference to MC the dinner that night!

I still have swelling in my left leg and foot and will be seeing a vascular expert in about a week to determine if he wants to put a stent in my groin.

Unfortunately, these weren’t the only problems that I had this month – I also was having trouble swallowing for a couple of weeks. It felt like there was food caught in my chest. Dr. Semrad was concerned that this new problem (coupled with my other medical issues) signaled more cancer growth. He was now wondering if colon cancer had moved to my esophagus.

I was ordered to take a CT, stat, to rule out cancer growth in my esophagus and throughout my body. I was thrilled to find out that there was no indication of further cancer growth. The doctors were actually surprised. But – that’s a good sign that it’s not showing growth. Dr. Fisher still thinks that there’s growth that we can’t see, so he won’t let me go back on my wonderful PDL-1. He’s making me stick with the toughest chemo that I can take.

Don’t worry about me, though! Just last week we were up on the slopes in Tahoe. I refuse to let this disease stop me from living my life.

So – what will my treatment look like for 2016? Because I had such a violent reaction to the irinotecan (vomiting, nausea, loss of hair etc.), they are going to lower the dosage dramatically to try to make it tolerable (and so that I don’t lose significantly more hair – fortunately, I was blessed with a lot of hair at the outset).

Following the irinotecan, I will be hooked up to the 5FU (although they told me that the pump would be the size of a cell phone and easy to carry around, it’s the size of a cell phone from the 1980s…) Then, 46 hours later, I will return for the Vectibix infusion. We’ll continue to do this every two weeks for as long as I can tolerate it.

What I really love is that my oncologists from Stanford and UC Davis are working together. I went in to see Dr. Fisher last week at Stanford to check in and he informed me that earlier that day he had spoken with Dr. Semrad at UC Davis about what their joint recommendation will be. I love that they did that without me asking. I’ve learned over the years, that the best oncologists are completely willing to work with other oncologists and get their opinions. It’s the insecure oncologists that resent patients pulling others into helping with their care. Did I mention that I adore my oncology team? As I was leaving Dr. Fisher last week, I turned to him and said “can you believe that you’ve been treating me for 8 years?” His response? “8 Years? It feels like 20!!”

I did get some unfortunate news earlier this week. As many of you may be aware, when I had my ileostomy surgery in July, we grabbed a bunch of tumor for testing. A significant portion of my tumor went to a place called Jackson Labs (JAX) for them to implant in immune-suppressed mice. Their goal was to grow my tumor in a living creature and then test 4-5 different drugs to determine which one(s) would be the most effective on my tumor.  While my tumors have had drug testing done on them several years ago, we’ve never had the opportunity to test drugs out on tumors that are in a living body. The belief is that tumors react differently in a live body, so this is most closely going to replicate what would happen in my body. They were able to implant tumor in 15 different mice. Generally it takes about 3 months for the tumors to grow. After 3 months, I received a call from the head of the lab letting me know that my tumors hadn’t yet grown, but they had hope that we’d see tumor growth over the next 3 months. Unfortunately, on Wednesday I received both a call and an email from the head of JAX labs letting me know that now, after 6 months, with no growth of the tumors being seen in the mice, it was now time to terminate the attempt. Dr. Fisher’s response to this news was “I guess that’s a mixed blessing. Turns out that the mere ability for tumors to engraft in mice is actually a bad prognostic sign. Those patients whose tumors do not grow in mice tend to do much better than those whose tumors do grow. Anyway, let’s take the optimism wherever we can find it.”

Therefore, while I am saddened that we won’t have the ability to get further information from the tumors in the mice, I am relieved to hear that this is actually a good sign. I will take that optimism wherever I can find it!

Later this month, Dr. Fisher will be going to the ASCO conference to hear about the latest breakthroughs for colorectal cancer. Let’s all hope that he hears something very promising!

This past week, following our Christmas skiing adventures (there’s nothing like being a Jewish skier on Christmas Eve Day and Christmas Day), we went to my sister’s cabin in Lake Isabella to spend our annual winter holiday with her family. This is a very important tradition for all of us. Last night, we grasped hands around our New Year’s Eve dinner table and vowed that we would always celebrate New Year’s Eves together. And – that we would be celebrating these new beginnings for many many many more years to come.

Thank you for all of your phenomenal support over the past year. May your 2016 be filled with love, light and lots of health!

Port Is In - Chemo is about to Begin

This past Thursday, I went to UC Davis Medical Center for Surgery 24 – putting in my port. I really was hoping never to have to do that surgery again. I’ll never forget when I last had it removed many years ago. I was so determined that I would never put it in again. So – on Thursday, when I was lying in my hospital bed waiting to be wheeled back into surgery, a huge wave of sadness engulfed me. I know that I should just be grateful that I’m even alive, but it’s hard not to feel sorry for myself.

So – I’m going to just put it out there. I am jealous of everyone else. I want desperately to have a normal life – spending time playing with my children, worrying about what I’m going to donate for the PTA fundraiser, figuring out what winter vacations we should take. But that’s not my life. And – I don’t know if it will ever be my life again.

This week I’ll be taking chemotherapy on both Tuesday and Thursday. On Tuesday, I will be getting Irinotecan and will be coupling that with my lovely penguin cold caps to save my hair. Once I’m finished with that four hour infusion, they will hook me up to a pump of 5FU that I’ll wear around for 46 hours. On Thursday afternoon, I will return to the Cancer Center for them to remove my pump and then they will give me a two hour dose of Vectibix. Vectibix is the chemo that is supposed to create a pretty ugly acne-like rash on my face, shoulders and back. We will be treating my rash with antibiotics.  I’m going to try taking some of the antibiotics over the weekend to see if I react to them (nausea is a possible side effect).

We’ll see how it goes. I realize that I’ve been spoiled for the last few years with my wonderful anti-PDL1. I was so lucky not to have any side effects! I truly hope that this chemo treatment will punch back the tumors and I will soon be able to get back on another immunotherapy trial.

I am worried about the girls. I am starting to see fear in their eyes. They aren’t used to seeing me in this much pain or so tired that I have trouble getting up. I don’t want them to be scared. It’s not fair to them. They should be able to have a carefree childhood.

On the other hand, I’ve seen both of them really step up and become my little nurses. Ellie is concerned that I’m not eating enough and reminds me frequently that I need to eat. She also gives me a lecture each night about the dangers of blue light at night and why I need to put my phone away early in the evening so that I can get a proper amount of sleep. Such an incredible caretaker. While Ari doesn’t have a particular healthy habit that she is concerned about – her nursing comes in the form of love. She braids my hair and is always willing to share a big hug. That’s as good as any medicine!

The next few months will be focused on destroying as many of the tumors as possible. Thank you so much for your love and support as I embark on this new challenge. The one thing that I have learned over the past 7 ½ years is that I can’t do this by myself. So many of you have held my hand as I stumbled down the path. I cannot express how grateful I am that you are there when I trip and come close to falling. Thanks for grabbing my arm and keeping me steady as I regain my balance.