Eve's Blog

Bag Lady

noreply@blogger.com (Eve) — Mon, 23 Jan 2017 02:18:00 +0000

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

noreply@blogger.com (Eve) — Sun, 06 Nov 2016 20:01:00 +0000

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

noreply@blogger.com (Eve) — Mon, 30 May 2016 16:11:00 +0000

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

noreply@blogger.com (Eve) — Thu, 25 Feb 2016 07:14:00 +0000

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!

noreply@blogger.com (Eve) — Wed, 24 Feb 2016 06:17:00 +0000

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!!

noreply@blogger.com (Eve) — Fri, 01 Jan 2016 19:30:00 +0000

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

noreply@blogger.com (Eve) — Sun, 08 Nov 2015 05:19:00 +0000

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.

Goodbye PDL-1 - Hello Chemo Blast!

noreply@blogger.com (Eve) — Wed, 28 Oct 2015 16:19:00 +0000

Well – we continue to be confused by my tumors. Yesterday I went to Stanford to find out the results of yesterday’s scan. Dr. Fisher and his team were expecting to see significant cancer growth. But they didn’t.

In fact, there were no additional tumors on the scan and the tumors that they could measure had not grown. However, due to the fact that I’m having pain and because my CEA continues to get higher, we have to assume that there is tumor growth in my nether regions. Unfortunately, that area of the body is very difficult to see in a scan.

Therefore, today, after 3 wonderful years, I officially went off of the anti-PDL1 study. Interestingly, I was on the study longer than any other patient at Stanford. Furthermore, according to Dr. Lenz at USC, he told me that he thought that I had been on immunotherapy longer than anyone else in the US. That is truly amazing because Genentech had decided within weeks of me starting the trial that they weren’t going to allow any other colon cancer patients on the trial because it wasn’t showing that it would work for colon cancer. But, it worked for me!

Within the next week, I will be getting a port inserted in my chest to begin the next difficult phase of my cancer journey. In two weeks I will begin a 3 part protocol that will take place every two weeks. I will receive irinotecan which is supposed to take my hair (I will be using penguin cold caps to ensure that I don’t lose a strand) and give me some other difficult side effects. I will also be infused with vectibix which is expected to cause a terrible looking rash on my face, chest and arms (I will be getting antibiotics to try to lessen the rash. Finally, I will be walking around for 48 hours every other week with a pump of 5FU attached to my body.

We expect this treatment to last for at least 3 months. We will then decide the next course of treatment (I’m hoping for another spectacular immunotherapy!)

I’m about to head into a very rough couple of months. On the good news front, I will be working with an oncologist, Dr. Thomas Semrad at UC Davis Medical Center. This will save me countless hours on the road between Davis and Stanford. Dr. Semrad is a lovely man and I just know he’ll take great care of me. In fact, when he came in to see me, he reminded me that we had met at an ACS event where I spoke. He told me that he is absolutely fascinated by my tumors since he’s never seen colon cancer act the way that it has in my body. He is excited to work with me. I’m just glad that he has taken a special interest in me!

Thank you all for your kind words and prayers. And – keep ‘em coming!!

A New Direction

noreply@blogger.com (Eve) — Mon, 26 Oct 2015 04:41:00 +0000

I know, I know – I owe you all an update. I am so far behind in writing. I keep planning to write, but by the time that I sit down to draft something, I'm exhausted. Therefore, tonight I have promised myself that if I just write a quick update and post it, that I will plan to write a more extensive update at another time. I just need to get something out now.

In a nutshell – I’ve been dealing with tumor growth in my nether regions. The growth has made it difficult for me to stand for more than a couple of minutes and even harder for me to walk without pain. Tomorrow I will be going in for a CT scan to confirm that there is tumor growth, but there really is no doubt in anyone’s mind that this is what we will see. Furthermore, a couple of weeks ago, I went down to Stanford to get botox in my bladder to see if it would help with my incontinence. Unfortunately, although it had an 80% chance it would work, it appears that I’m in the unlucky 20%. While we were putting in the botox, the urologist looked at me to make sure that I saw what he was seeing on the screen. There was a tumor that was growing into my bladder.

With this information, Dr. Fisher is planning to have me go off of my wonderful study and reenter the chemo world. I will likely receive 2 drugs with some tough side effects. One drug will cause my face (and potentially other parts of my body) to break out in a horrible rash. The second drug is one that will go after my hair – so I’ll be restarting my fun with penguin cold caps. I have a very tough time ahead. The only plus to all of this is that they strongly believe that this chemo will shrink my tumors. Perhaps with this shrinkage, I’ll be able to walk comfortably again and may even get more than an hour of uninterrupted sleep at a time.

Because the chemo is a treatment that I can get anywhere (it’s not associated with a study), I have asked Dr. Fisher to work with UC Davis Medical Center to give me my chemo. At least I won’t be driving for hours every two weeks down to Stanford for treatment.

Hopefully, after a couple of months, I’ll be able to join another immunotherapy study and I’ll have some normalcy in my life once again.

Last weekend my family traveled down to LA to celebrate my nephew Leo’s bar mitzvah. It was a phenomenal experience. Leo was amazing and being surrounded by my relatives, many who I haven’t seen for a long time, was so nourishing. It reminded me that this is why I’m fighting so hard. So I can celebrate wonderful accomplishments with my family and friends. Next year the girls will celebrate their b’not mitzvah (a bat mitzvah for 2 girls). Cancer doesn't stand a chance against my desire to be there to celebrate with them!

Anniversaries

noreply@blogger.com (Eve) — Sun, 06 Sep 2015 02:34:00 +0000

I know, I know. I have done a terrible job of keeping this blog up to date. It’s been a month since my last post and so many things have happened.

I’m glad to say I’m back at work. I am probably working more hours than I should, but it just feels good to be part of the world again. But I’m still recovering. My surgery incision wound is mostly healed, but there’s still a little bit to go. The pain continues to plague me – in my nether regions and my back. I’m now thinking that I shouldn’t have been so eager to lower my pain medication. I will probably talk to Dr. Fisher’s team next Tuesday about that.

On the good news front – we just had my right kidney tested to see if there was a blockage and I’m thrilled to say that it’s normal! As you may recall, I lost the use of my left kidney some time ago because of a tumor that was blocking my ureter. Although we put a stent in that ureter, the kidney has yet to resume normal function and is unlikely to do so. Therefore, it’s very important that my right kidney stays healthy. And it is!!

Also – I had my CT scan a few weeks ago and although they saw two additional spots, the official word is that the tumors are stable and so I was able to remain on my wonderful PDL-1 trial. However, we decided to talk about where I go post-PDL1. It looks like it may be a Stanford trial using CD-47.

When Dr. Fisher asked if he had ever mentioned CD-47 to me – I immediately responded that he had. In fact, when he originally told me about it, in the back of my head I was jumping for joy. This is going to be the drug that will keep me alive to see my children grow up. And – why do I know this? Because 47 is my lucky number. The idea that I would get a drug with the number 47 in it – well it’s just too compelling to ignore. When I told Dr. Fisher this – he, too, was amazed. He asked why my lucky number was 47.

Well, anyone who went to Pomona College will appreciate this lucky number as it is the lucky number for the school. When I graduated, I decided to continue the tradition and keep 47 as my personal special number. And – here it is. At the time that I need luck more than ever. Pretty great coincidence.

This weekend, I’m up in Spokane to celebrate my parents’ 50^th wedding anniversary. Tomorrow, Pat and I celebrate our 17^th anniversary. Although I’d love to have a goal of getting to 50 years together – I’m going to focus on getting to 25 years together. That would be an incredible blessing. But – with PDL-1 and CD-47 coursing through my body – I am confident that this goal is in reach.

Happy 50^th to my mom and dad! And – Happy 17^th to my wonderful husband!

It Has Been a Busy Month

noreply@blogger.com (Eve) — Tue, 04 Aug 2015 02:05:00 +0000

I’ve started this blog post at least 3 times. There seems to be so much to share that it’s overwhelming to me. I’ve decided that I’m going to post just the snippets – since I’m still very tired from everything. Unfortunately, I have not bounced back like I have in previous surgeries. This has been a rough recovery.

At first all went very well. On July 1^st I had the surgery. I got my bag, they cut out a bunch of tumor to send to various labs and the surgeon didn’t see any evidence of tumor growth when he went in to create the ileostomy. Unfortunately, I ended up with an ileostomy (I was hoping for a colostomy). When I spoke with the surgeon following the surgery, he said that he thought it would be a long shot to put on a colostomy bag. I had too much scar tissue in my stomach and they just couldn’t make it happen with all of that tissue.

Another unfortunate event was that my fistula was larger than they expected and ended up going into my bladder. Therefore, I woke up to find out that it’s a strong likelihood that I’ll be incontinent on the urine front for the rest of my life. They could fix it with another bag, but I’m just not willing to add yet another bag to my life at this time. This discovery was very hard for me to take and has made recovery harder for me.

I was able to leave the hospital on July 3^rd thinking that all was well. Unfortunately, on July 4^th, I was in excruciating pain and ended up going to UC Davis Med Center. They didn’t know what was wrong with me and tried various pain meds. After determining that it wasn’t anything serious, they sent me home (about 2 am). On July 5^th, all went well, but on July 6^th, I woke up in terrible pain in my back once again and so back we went to UC Davis Med Center. This time they decided to admit me to the hospital to see if they could do further work on me to determine the cause of my pain.

After 2 days at the hospital, they still didn’t know what was wrong. They thought it was an infection that couldn’t be treated with oral antibiotics and they wanted to keep me at the hospital for 20 days to give me IV antibiotics. Fortunately, my Stanford doctor stepped in and spoke to UC Davis and convinced them to discharge me.

On Thursday, July 9, I went back down to Stanford to meet with my surgeon Dr. Shelton to see how things were going and to remove the staples in my stomach. I was having some kidney problems and so they ordered a Mag 3 test for me. On our way home, we got a call that the Mag 3 test was set for the following day – so we decided to stay down close to Stanford. This ended up being a good move, because at 4 am the following morning, I woke up in extreme pain once again and for the third time in a week, Pat and I headed to a hospital – but this time, it was Stanford. There are many stories from my hospitalization but I was finally released after several days.

The next 3 weeks were tough. I’ve never had such a difficult time recovering from a surgery. I’ve lost a significant amount of weight due to multiple factors, including the fact that my new configuration doesn’t enable my body to absorb as many nutrients from the food that I eat. In addition, I did not know that it is not only not advisable, but actually dangerous to go “cold turkey” off of OxyContin. I felt like my pain was under control and so I just decided that Monday morning to stop taking any more Oxy. This was a very big mistake. I ended up becoming extremely depressed and tired and just wanted to sleep and cry. By Tuesday morning, my girlfriend Kirsten who was staying with me, was having trouble understanding me. Also – I knew that something didn’t feel right that morning, so I texted my oncologist’s nurse practitioner to tell her that something was off. When she called to talk to me, she was having so much trouble talking to me that she ended up talking to Kirsten. Needless to say, she instructed Kirsten to make sure that I started taking Oxy again (at a low dose) and told her that I needed to stay on Oxy until they could taper it down for me. Once the drug was reintroduced into my system, I began to feel much better. What a scary situation. Over the past 7 ½ years I’ve gone on and off of countless pain meds with no problem whatsoever. But – this was my first time on OxyContin. I’ve learned that this drug is unlike any other I’ve ever been on.

So – I am now tapering off of Oxy, my wounds are starting to heal and I am slowly getting used to my bag. I’m also starting to learn what it feels like when I think I need to urinate. Between that and using the bathroom very regularly, I have avoided the downsides of urinary incontinence.

Rather than continue to work on this post and continue to add to it day after day – I think I’m just going to stop there so that you’re up to speed with the latest.

But – I would be remiss if I didn’t end this post by being grateful for my amazing support network. I had a continuous parade of friends come to visit me at the hospital and at my home. I had so many people cook for me or bring me food. My sister and my mom both flew in to hold my hand and get me through some of my roughest days. And – most importantly, my dear husband Pat, who changes my wound every day and changes my bag every few days without complaint – only with love in his eyes. I don’t know how I got so lucky to have snagged this guy – but I feel like I won the lottery on the husband front.

A huge thank you to all of you who have been there for me, either in person, by phone, by email or just by sending me your prayers. I am so very very grateful. I feel like I am now really beginning to heal.

One Week Away

noreply@blogger.com (Eve) — Wed, 24 Jun 2015 05:48:00 +0000

I have begun writing this blog post more times than I care to count. Each time I get about a paragraph into it and then I stop – abandoning it and deciding that I’ll write the rest another day. Then another day comes, I start again to abandon it once again.

I tried to figure out why that was. I think that the subject is too overwhelming for me. I can’t believe that I’ve finally come to this point in my cancer journey. It’s time to get the permanent ostomy bag.

Those of you who follow me know that I have been dreading this time for many years. I narrowly escaped a permanent bag many years ago. Then – last October, a rectovaginal fistula broke through and I was told that it was time for a bag. But then, amazingly, it seemed to heal and I was given another reprieve.

Unfortunately, I was wrong. It didn’t heal. I was able to keep the tissue fairly intact for a long time. But – when we took the girls to Washington DC for Spring Break, the constant running around and strain on my fistula was too much and I began to experience necrosis of the tissue. There was no going back.

Over the last two months I ran around to different surgeons – USC, UCSF and the Cleveland Clinic to see if they had any other options than Stanford had presented to me (which was a permanent ostomy bag). Unfortunately, each surgeon agreed with Stanford claiming that my only option at this point is the bag.

In May I was given the opportunity to address my board, other leaders in the life sciences and members of Congress about my life as a cancer patient. I took that opportunity to ask the life sciences leaders (in particular the medical device leaders) to let me know if they were aware of anyone working on an artificial colon. Alas – it appears as if that’s not something that is imminent.

So – here I am, attempting to prepare myself mentally for the challenge I have in front of me. Next Wednesday, July 1^st, I’ll go under the knife again. When I wake up, I’ll either be sporting an ileostomy or a colostomy bag. I’m hoping that it will be a colostomy. I’m not going to go into the reasons why, but apparently, life is a lot easier with a colostomy.

I’m scared. I cry easily. I so dread this permanent change in my body. I know that lots and lots of people live with the bag. I’ve talked to many of them. I was even connected through a friend to Rolf Benirschke, who used to be a kicker for the San Diego Chargers many years ago, and in the middle of his time with the NFL, ended up having to get a permanent ostomy – but STILL was able to return to the NFL. He has been holding my hand, along with so many others, as I am about to embark on this difficult journey.

I guess that this would be easier if this would mean the end of my cancer journey. But it doesn’t. This doesn’t impact the cancer at all. All it does is fix my piping so that my body isn’t susceptible to becoming septic. Furthermore, when I was at Stanford last week, my cancer indicator number had jumped up. So – I’m getting a bag and there is a strong possibility that my cancer is growing. Let’s just say that it’s not an easy time for me.

I am hoping that getting this bag on will reduce some of the constant pain that I’m in. I am on some pretty significant pain meds. I don’t like living my life on pain meds. It’s just not right. But – the pain is too great to go without them. I wake up many many times during the night in pain. I’m never rested. Perhaps the bag will bring me some relief. Some sleep. Oh – how I’d love to have a full night of sleep.

As the time gets closer for my surgery, I find myself in an emotional upheaval. It’s hard to keep my head on straight. But – I have to. I have a job that is counting on me. I have children that are counting on me. I have me that is counting on me.

Please send prayers my way over the next week. My body is about to change dramatically. But – it’s time. I’ve held out as long as I could. If I wait anymore, I’ll be putting myself at risk. And – that just isn’t worth it.

Thank you for all of your love, prayers and support. I’m sorry that I didn’t tell you all sooner about this. But – I still think I’m coming to grips with it. I guess it’s a good sign that I finally made it through a blog post. Before, I erase this and start again another day – I think I’ll just push “post.”

Bag in my Future & Grossly Stable

noreply@blogger.com (Eve) — Thu, 23 Apr 2015 19:34:00 +0000

This was written on Tuesday night - but I am just now getting around to posting it....

---------------------------------------------

I am now on the plane home from Cleveland, Ohio where I met with a surgeon from the Cleveland Clinic. This is my fourth surgeon in 2 weeks. I have traveled to USC, UCSF, CPMC and now the Cleveland Clinic. I give up.

Over the past month, my fistula has become exponentially worse. I can no longer ignore it. I knew that Dr. Shelton felt that the only real option for me was to put on a permanent ostomy bag. But, I am not one for just accepting the opinion of just one surgeon (albeit an amazing surgeon). So – I set to work exploring if there were any other options for me. I found some of the best colorectal surgeons in the US. After reviewing my situation, each of them came to the same conclusion – a bag is my only option. The tissue is too damaged from the radiation, I have too many tumors in the vicinity, and the risk is too great for something to go wrong.

I’m now pulling out my calendar to figure out when to schedule this surgery. Fortunately, it’s not urgent, but I can’t put it off indefinitely. I need to get the surgery done before it becomes an emergency. I’m pretty devastated. I guess that in the back of my mind I kept expecting a miracle. But – it is not to be.

But – on the miracle front – I do have good news to share. My latest PET/CT scan showed that my tumors are “grossly stable!” Honestly, I’ve never heard this description before, but apparently it means that my tumors did not go down. Most importantly, it means that they did not grow or spread.

Because my tumors are stable, I am able to remain on my wonderful PDL-1. What a huge relief!

This last month has been a huge rollercoaster. I’m about to head into yet another rough surgery with long term implications but it could be a lot worse. I am lucky to be alive. I just need to remind myself of this as I take on this next challenge.

Unexpected News

noreply@blogger.com (Eve) — Mon, 19 Jan 2015 06:19:00 +0000

This past Tuesday, I drove to Stanford Cancer Center to receive the results from my CT scan. It is an unnerving time – the days and then hours leading up to that appointment. Your mind is filled with possibilities of what the news will be and all you can think is, “will my life radically change today?”

Three weeks earlier when I met with Dr. Fisher, I told him that I had an explanation for all of the pains in my body (of course I had determined that none of the pain was related to tumor growth). He looked at me and laughed. He responded that while he appreciated my optimism, he believed that much of the pain was due to tumor growth. However, he told me that we could stick with my theories until we got the results from the CT scan.

Well – on Tuesday – I got the laugh! Apparently, my cancer has remained stable and a couple of tumors may have even decreased a little.

Wow. We really weren’t expecting that news. I had mentally prepared myself for ramping up my efforts to seek new treatment options. But – I’m not there yet. Instead of gearing up for what was sure to be a rough road ahead, I got another infusion of my wonderful PDL-1.

It was a good day. More than that – it made it a good week.

Sometimes unexpected news can be the best news there is…

January 5, 2008

noreply@blogger.com (Eve) — Tue, 06 Jan 2015 07:08:00 +0000

Seven years ago I woke up in Mercy Hospital in Des Moines, Iowa to learn that I had colon cancer. I will never forget that day. I was overwhelmed – fear, shock and sadness washed over me.

When I first started this blog, I implored everyone who read it not to share with me any statistics – since my oncologist wisely told me that I wasn’t a statistic.

Since January 5^th of 2008, I have proven my oncologist right. I am not a statistic. Since then, I have seen the statistics and have learned that I should have been under ground years ago.

But – I’m not. Today I am alive and thriving. I still have cancer – but it hasn’t stopped me from living a full life.

I’m here because of all of the amazing support that I have received over these many years – from my oncologists, my surgeons, my complementary medicine practitioners, my religious leaders, my friends, my colleagues, people who I have never met and from God. I am so blessed to have so many in my corner – cheering me on. Thank you. I am so very very very grateful.

Limping Along

noreply@blogger.com (Eve) — Wed, 31 Dec 2014 06:19:00 +0000

Last week, I went to Stanford for my regular PDL-1 infusion and meeting with Dr. Fisher. He gave me the update from my stent surgery the week before. Apparently, they saw cancer in my bladder – but it was the same cancer from the last time that they were in there. It’s strange how my perspective has changed over the years. I am no longer devastated when they tell me about the cancer in my body – as long as it hasn’t grown or spread.

When I met with Dr. Fisher, I told him that I believed that all was well – I had an explanation for every pain that I was feeling. He told me that while he appreciated my positive attitude, he believed that my cancer was actually growing and that soon we would be moving to a new protocol. There are a few different options – options are a good thing.

I will be getting my next CT scan in mid-January. Once we get a new look, we’ll figure out next steps. I may also reschedule those appointments with the other cancer centers to get their input as to whether they have something innovative for me.

I asked Dr. Fisher whether he was hopeful that there would be new treatment coming out soon. He sadly told me that unfortunately, he didn’t believe that there was anything in the near horizon. I told him that I would continue to limp along until something better came along. His response? “Eve – you are more than limping along – you’re doing great.”

Later this week, it will have been 8 years since I was originally diagnosed in Iowa. It’s truly a miracle that I am not only alive, but working full time, raising my children and fully participating in life. Just last week, as I was happily skiing with the girls in Tahoe, I marveled at how truly remarkable that it was that I was able to ski. Although, I am in continuous pain, I haven’t let it stop me. Cancer will not stop me from living my life. No limping for me.

I hope that your 2015 is filled with lots of love, happiness and health!

It's Just Made Me Stronger

noreply@blogger.com (Eve) — Mon, 15 Dec 2014 05:20:00 +0000

As you know, the past couple of months have been rough. Tumor growth in my rectum and my abdomen has resulted in lying-awake-at-night-pounding-on-the-pillow pain from my belly button to my lower back. As you can imagine it's difficult to be on my game when I'm running on empty.

A couple of weeks ago as I tucked Ellie into bed, I looked down at her sweet face and couldn't help but tell her how sorry I was that she had sick mom. That it wasn't right that she had to go through this. She looked up at me and replied, “That’s ok, mom. It’s just made me stronger. I know it isn’t your fault that you have cancer.”

Her response took my breath away. What a wise little girl. She’s probably right – it has made her and Ariel stronger. But – how I wish that they didn’t have to go through this. No child should be so intimately aware of the effects of chemo, the impacts of constant surgeries and the disruption of regular cancer treatment.

As for the latest with me – as you may have figured out – I didn’t have surgery on Wednesday. I ended up pushing it off since my fistula really wasn’t bothering me too much. My surgeon told me that he wasn’t in any hurry to do this life altering surgery and that we could push it off. Since some of the symptoms have returned, I should probably reschedule it – but I’m not in any hurry to make that call….I’m going to see how long I can go….

But, tomorrow I will be having surgery number 20. We will be changing out the stent in my ureter. While this would normally be a fairly simple surgery, because I have a fistula, it does add a level of complication to it. Hopefully, it’s easy peasy and I’ll be home in time for a late dinner.

Please send me some extra prayers tomorrow as I head into surgery number 20. I am tired from the pain, tired from the never ending struggle. However, I am amazed by my body. How it continues to buck the odds and fight for health. It’s truly remarkable. And – like Ellie – this whole experience has just made me stronger.

2 Weeks of Extreme Stress

noreply@blogger.com (Eve) — Tue, 28 Oct 2014 05:24:00 +0000

The past 2 weeks have been 2 of the roughest that I’ve experienced over the past 7 years. As I’ve noted earlier, I have been having a significant amount of pain in my back, my tush and my vagina. These pains have kept me from sleeping more than a few hours a night. I have tried narcotics, a chiropractor and a host of other modalities – but finding relief has been elusive.

On Monday, October 13, I went in to Stanford for my regular appointment with Dr. Fisher and to get my PDL-1. I told him about my pain, my thin stools and when they poked around in my vagina, things were not normal. He immediately ordered a CT scan and vaginal ultrasound. We talked about the strong likelihood that these were symptoms of cancer growth and then discussed potential next steps. We were both confidant that once we confirmed “progression of disease” via CT, that I would no longer be able to stay on my wonderful Genentech PDL-1 and we’d have to figure out other options.

Unfortunately, the options that he outlined were not promising and every single one of them came with debilitating side effects (massive rash, blisters, etc.) This was devastating.

The week was only to get worse. On Tuesday, I continued to have significant problems with my vagina. I contacted my gynecologist who fit me in first thing on Wednesday. Upon examining me he determined that I was now dealing with a rectovaginal fistula. Next to the ostomy bag, this was the nastiest thing imaginable. We believe that when Dr. Fisher’s assistant was examining me that she burst the fistula.

The fistula was always a potential side effect from radiation. However, my radiation oncologist tried to be very careful to avoid this. Unfortunately, due to the aggressive nature of my tumor coupled with the weakened tissue from radiation, this created a perfect storm and now I am dealing with this new challenge.

Since Stanford’s treatment options were so dismal, I decided that it was time for me to explore other options. I hurriedly set up appointments with UCSD, UCSF, USC, City of Hope, MD Anderson, the Block Center and Cedars Sinai to take place in the next two weeks. I felt the need to “do” something and since I can’t control what’s going on inside, the best I can do is to come up with a plan of action.

Dr. Fisher also set me up with an appointment with Dr. Andy Shelton – my amazing colorectal surgeon. Based on the fistula plus the thin stools, Dr. Fisher’s assessment was that I would be looking at putting a permanent ostomy bag on. This was a very very bad week.

My fear was debilitating. Amazingly enough, last weekend my job brought me to Pebble Beach for the California Legislative Black Caucus event. One thing that I have learned over the past 7 years is that the African American community is very spiritual. So – over the weekend, several legislators pulled me aside to pray with me. They impressed upon me to replace “fear” with “faith.” They were truly amazing.

On Wednesday, I went in for my CT scan and vaginal ultrasound. I received an email from Dr. Fisher that evening informing me that the scan did not show progression of disease. It hadn’t grown or spread – it wasn’t in my liver, it wasn’t in my pancreas. Strangely, they can’t see the tumor in my tush which continues to give me so many problems. But – because the scan showed stable disease, I can officially stay on my Genentech trial. I was stunned. This was not the news that I was expecting – it was beyond my wildest dreams.

On Thursday morning, Pat and I went back to Stanford to meet with Dr. Shelton to talk about my surgery. He confirmed that he did need to put a permanent ostomy bag on, but that it didn’t have to happen within the next week. Furthermore, he said that if I wanted to remove tumor from my abdomen, that he would happily do that as well.

It occurred to me that this could be a strange blessing in disguise. Dr. Fisher has wanted to get my tumor analyzed for quite some time – to figure out its genetic makeup and to do some chemo sensitivity analysis. However, all of the diagnostics companies need fresh tumor. Because I haven’t been operable, we have not had the ability to get fresh tissue. This is our chance. The price is losing my colon – but this opportunity may lead to the lifesaving treatment that we’ve been looking for.

Because we don’t have to do the surgery right away (I actually have pushed the surgery to the second week in December so that I can put on CHI’s annual Lifesciences Academy), I have time to arrange the tests with the companies that do the analysis. It also gives me the opportunity to come up with the money to pay for the testing.

So – there was some very good news and some not so great news this week. But perhaps, the not so great news will shine a light on my cancer enabling me to continue on my journey.

Prayer Request - Again

noreply@blogger.com (Eve) — Fri, 10 Oct 2014 18:24:00 +0000

So – I had written but had forgotten to post the "Phew" blog until today. That blog post had a lot of good news. Unfortunately, I think I’m heading into a rough patch once again. After seeing the chiropractor 3 times this week, my back is feeling much much better. However, I am continuing to be plagued with stabbing pain in my nether regions and my stools have begun to shrink to pencil thin. These are the same symptoms that I had before they found the tumor in my rectum this past summer.

I am thrown into yet another place of fear, sadness and panic. I will be meeting with Dr. Fisher on Monday for what was to be my regular PDL-1 infusion. However, I may call today and see if we need to push forward with a CT scan.

Oh – how I wish this disease would leave my body. This rollercoaster of fear is so exhausting. Pain is exhausting. Lack of sleep from pain and fear is exhausting. I can’t help but go back to the question, “Why me?” I know that’s not a helpful question. I know it’s not a rational question. And I know it’s an unanswerable question.

But – it is one that continuously floods my head.

When I met with the radiation oncologist earlier this week, he told me that I had been very fortunate. A few years ago, the average length of survival for metastatic colon cancer was 10 months to a year. He said that I should be happy that I had so many additional years. Yes – of course I’m happy about that. But his comment made me feel like I am indeed living on borrowed time.

This weekend, I’m heading to Baltimore for my cousin’s kids’ b’nai mitzvah. I just pray that someday I will get to attend my own girls’ b’nai mitzvah.

We should know more soon. Please send me a little extra prayer this week.

Phew!

noreply@blogger.com (Eve) — Fri, 10 Oct 2014 18:18:00 +0000

So – I just realized that I haven’t updated all of you as to the latest on the journey. As I may have mentioned previously, for the past few months I’ve been experiencing a lot of lower back pain. I hadn’t been able to get it checked because, quite frankly, I didn’t have the time. It was the end of legislative session and my office was in the throes of getting bills passed. Meanwhile, at home we were building a new bedroom and bathroom for our exchange student (who we also had to get situated for her year). Oh, and then there were my existing two girls going back to school, plus repeated trips back and forth to Stanford for cancer treatment. So, my poor back took a “back seat” to everything else.

But – the pain started screaming louder and louder. Dr. Fisher and his team kept trying solutions – mostly narcotics and other pharmaceutical fixes. He had mentioned getting an MRI in case the pain was due to spine metastasis. However, I kept putting that off. Why? Because frankly, if I had cancer in my spine, I didn’t want to know. Progression of disease means I’d be kicked off of my study. And – as I’ve written before, there aren’t a lot of options if I’m kicked off of my study. So – I lived with the pain and tried to ignore it.

After many sleepless nights, I carved out time to see a chiropractor. I figured this is just old age, so perhaps he can adjust me and off I go!

Interestingly, the day before I went to see the chiropractor, Dr. Fisher’s physician assistant, Dana, texted me just to check in and see how I was doing. I texted her back that my back continued to be in pain but that I’d be going to the chiropractor the following day.

Within seconds, I got a text back saying “no you won’t.” Apparently, when Dr. Fisher and Dana saw that I was thinking about going to a chiropractor they panicked. Without knowing if this was spine mets, getting treatment from a chiropractor could be extremely dangerous. He could end up breaking my spine. But – Dr. Fisher did not believe that they would find mets. His guess was that my back problems could be chalked up to old age – either a bad disc or sciatica. But – he would not allow anyone to work on me until we had ruled out mets.

The appointment was canceled and I tried to figure out how much longer I could go on with the pain. Finally, a couple of weeks ago, I was down at Stanford for my infusion, and I convinced them to give me an MRI the next morning.

On Tuesday morning I spent two hours in the MRI machine – laying perfectly still. I don’t know if you’ve ever had an MRI, but it is like going into your coffin. I am not a person who has claustrophobia, but I sure as heck felt claustrophobic inside of that machine.

So – let me cut to the chase – after many days of waiting for the results, I finally received a text from Dana making sure that someone had told me that my MRI was normal. I did not know. Interestingly, I received the text at our pre-Sunday School religious service. And – it came right before we said the shechechiyanu. The shechechiyanu is the prayer of thanks. How amazing is it that I got that news right then. Furthermore, it came during the 10 days between Rosh Hashanah and Yom Kippur. To me, that meant that I was being inscribed in the Book of Life for the upcoming year.

Prayer

noreply@blogger.com (Eve) — Sun, 31 Aug 2014 22:46:00 +0000

Today, I opened my mail to find a lovely card inside. When I opened the card, there were beautiful messages from many women, none whose names I recognized. I finally noticed who the card was from – the United Methodist Bible Study Group of Nevada, MO. After looking through the names more carefully, I realized that one of the women was the mother of a colleague and dear friend of mine from Southern California. She had told me awhile back that her mother’s prayer group had been praying for me, but it had completely slipped my mind (I’m going to blame the residual effects of chemo brain).

The notes from these women were filled with love, hope, faith and determination. I was overwhelmed with gratitude and quickly began to tear up. These women were praying for me – this little Jewish girl from Davis. They were spending their energy and time to ask God to help me.

But – this is not the first time that people of faith from throughout the world have asked for God’s help for me. Throughout the years, prayer sisters have popped up in the African American community, friends of friends in Israel have prayed for me at the Western Wall and during their marriage ceremonies, friends have lit candles in churches throughout Europe during their travels, I have received water from Lourdes…quite honestly, it has stunned me how many prayers to God have been said throughout the world to help me as I go through my cancer journey.

Recently, I was reminded by one of these prayer warriors that while I thank a lot of folks in my blog – my doctors, my family, my friends – I rarely mention how grateful that I am to God. I was reflecting on that. I know that I ask for prayers on a regular basis from all of you – so it’s not like I’m hiding the fact that I think that God plays a significant role in my healing. I often talk to God – asking for strength – asking for courage – asking to restore my health. I also personally thank God on a regular basis for the many miracles that I have witnessed over the past 7 years that have enabled me to be alive and thriving today.

I do believe in the power of prayer. So – for those of you who are concerned that I haven’t publicly acknowledged God’s role in my healing – I’d like to be clear that I am very grateful to God for bringing me to this day. I don’t know what he/she has in store for me in the future. I hope that it will be a long life. Furthermore, I am so very very grateful for all of your prayers asking God to aid me throughout my journey.

I just realized that I did not tell you about my latest cancer challenge – I had my stent in my ureter changed on Monday. The surgery went without incident – it was only 30 minutes and I was back at home by noon. On Tuesday, I will be returning to Stanford for my next infusion of PDL-1. I’m expecting this to be without incident. I’ll be back working in Sacramento by mid-afternoon and home to help the girls with homework by that evening.

Thank you, God.

I Can Breathe

noreply@blogger.com (Eve) — Mon, 18 Aug 2014 05:51:00 +0000

First, I need to apologize. In my craziness this week, I neglected to update all of you on the results from my CT scan. I realized about mid-week that while I had posted on Facebook, I had neglected to inform all of you. And then my week got away from me. It is now Sunday, and I am finally sitting down to give you all the news from last Monday.

On Monday morning, bright and early, I was at Stanford for my CT scan. I was jittery knowing that this was a critical day and the outcomes could have a profound impact on my life. After my 7 am CT, I worked for awhile and then went to my scheduled appointment with Dr. Fisher at 11:45 to get the results only to find out that he was running at least an hour behind. Finally, at around 1:00 pm, my dear friend, Shelley (she came to hold my hand on Monday) and I were ushered to the back waiting area. After waiting an excruciating amount of time, Amanda, the woman who works on the PDL1 study, came in to see me. She told me that while she could not officially tell me anything, she believed that I was going to get an infusion of my wonderful PDL1 that day. Basically, she was cryptically telling me that my tumors had stayed stable and I wasn’t going to be kicked off of the study. I began to cry with joy and relief. Shelley then began to cry. Amanda then started to tear up. Dana, Dr. Fisher’s right hand, walked in to give us the “official” news – the tumors had stayed stable and in fact a few of them had actually decreased in size. Furthermore, my blood work showed that had my cancer indicator number had dropped from 72 to 54 in 3 weeks. This is a very significant decrease. We were all overwhelmed with happiness. Amanda and Dana told us that they had been on pins and needles for the past couple of weeks because they were so concerned about what the CT would show following the my most recent PET/CT.

Dr. Fisher entered the room with a HUGE smile on his face. The room was joyous knowing that we were not about to change direction. He did offer a couple of more options to have in my back pocket should I no longer get to stay on the trial (neither of the new options were promising – so hopefully I won’t every have to tell you about them). Fortunately, I was given clearance to get my infusion of PDL1 and I spent the afternoon happily soaking in my amazing drug.

Directly following my infusion, I jumped in my car and even made it back to Sacramento in time to put on a whiskey tasting fundraiser for an Assemblymember!

My next scan is not for another 3 months. I feel like that gives me a chance to breathe. I am incredibly relieved that my tumors did not grow, that the PET/CT was picking up other activity besides cancer growth.

In other good news, the pain in my tush is slowly decreasing and I’m not in constant overwhelming pain. I am definitely looking forward to the day that the pain is no longer such a significant part of my life. But, I’m not complaining – my tumors are stable (which, for me, is all that really matters)!

Thank you all for your heartfelt prayers, positive thoughts, love and amazing energy. I just know that having you all by my side was the reason that I received such phenomenal news on Monday. I am filled with gratitude.

Monday

noreply@blogger.com (Eve) — Thu, 07 Aug 2014 19:06:00 +0000

Thinking about this coming Monday takes my breath away. It is on that day that my life could change. Spoiler alert – I don’t want my life to change.

To get you all up to speed….

As you know, I had a tumor that was discovered in the scar tissue in my tush. The problem was that in order to radiate it effectively, they needed to see it on scan. So a few weeks ago, I took both a PET/CT scan and an MRI with radiation. Fortunately, they were able to locate the tumor and I commenced a 10 round radiation program on July 14. The radiation oncologist was wonderful working with my schedule. He even planned for 2 rounds of radiation on the 17^th so that I could fly down to San Diego that evening. I had to present to my board the following morning and I was holding a fundraiser for the Assembly speaker that afternoon. Amazingly, everything went off without a hitch. I can’t tell you how incredible it was that he was able to work with me – although he did think I was a little nuts.

Unfortunately, the PET/CT scan showed a lot more activity than my previous PET/CT. This is very concerning for everyone since it could indicate significant cancer growth. So – on Monday, I will be given a regular CT to see if there is growth or if what was lighting up the CT was only inflammation. If my CT shows growth, I will be kicked off of my wonderful Genentech trial with PDL-1. My options at that point are not encouraging. They basically consist of 3 potential paths forward:

Go on a trial called CTLA4 – this would inject another immunotherapy directly into a tumor and then we’d blast it with radiation with the hope that it would ignite my immune system to go after the cancer throughout my body (very similar conceptually to what we’ve been doing). Unfortunately, there aren’t great stats that show that this will work on colon cancer.
Go on another trial with a name I can’t remember – there is a small company with a single product that they are considering for me. Unfortunately, the trial is in Phase 1, so there are hardly any results. Also – this trial would entail me going down to Stanford twice a week for 6 weeks for a 4-6 hour infusion. Pretty awful sounding with no encouraging stats to make me excited about putting myself through it.
Go back on chemo

So – as you can see, I am really really praying that the CT scan shows stable disease and that I won’t be contemplating any of the 3 options above. If it doesn’t show stable disease, I will most likely try to find out if there are other options with other cancer centers.

I am also continuing to be in a lot of pain from the radiation. They said that the pain should begin to dissipate after a few weeks. It can’t come soon enough. I’m having trouble sleeping because of the pain and that makes dealing with all of this uncertainty even more difficult.

Now you are all up to speed on the latest. I hate to ask it again, but I need your prayers over the next several days. I’m scared right now. I’m tired right now. I need your strength. I need your love. I need your faith and hope.

I Want to Be Old

noreply@blogger.com (Eve) — Sun, 06 Jul 2014 19:19:00 +0000

Over the last few years I’ve noticed an interesting reversal of how I see elderly people. I’m jealous of them. While others covet youth, I covet old age. When I see an elderly person, I say a little prayer that someday I, too, will be old. I can hardly wait for each birthday. While I love having young girls, I want to see them grow up – I want to suffer through teenage years. I want to be there for the boy trouble, the skin problems and the teenage girl drama.

So – this week, I’ll head back down to Stanford for an MRI and PET/CT scan. They are having trouble pinpointing my tumor using a regular CT scan and they need to know where it is in order to radiate it. I want them to figure it out – fast. I am in extreme pain every day and I can’t wait to begin the radiation.

They also don’t want to radiate the tumor quickly. Because the tumor is about 3-5 cm up from my rear, they have to be very careful. They don’t want to burn a hole through anything down there. I’m not going to describe what can happen when a hole is created – but it’s not pretty.

Going slow means that I will be going to Stanford daily for 2-4 weeks (depending on what they see this week with the tests) for radiation. I hope to begin on July 14. Fortunately, we’re doing this while the legislature is on recess. I’ve had to cancel a couple of vacation plans, but that’s ok. I’m just glad that no one is talking about excising body parts at this point or kicking me off of the PDL-1 study.

When I was complaining about the amount of time that the radiation was going to take, my radiation oncologist, Dr. Albert Koong, looked at me and said, “Eve – I want to go slow so that you don’t have problems 10 years down the line.” While I wasn’t crazy about the amount of time that it will take for the treatment - it was like music to my ears to hear him use the phrase “10 years down the line.”

We’re hopeful that the radiation coupled with the PDL-1 will jump start my immune system once again. Our fingers and toes are crossed that this will be the magic that we’ve been waiting for. I so want to rid my body of disease.

I’m looking forward to getting old. I’m looking forward to everything that comes with getting old. Because then I will have lived long enough to have raised my girls – which is, by far, my most important goal.

Bring on the birthdays!

Healing Ceremony and Some Tough News

noreply@blogger.com (Eve) — Sun, 22 Jun 2014 23:35:00 +0000

It has taken me a couple of weeks to sit down and tell you all about the wonderful healing ceremony that we held at our home. I’ve been very busy with the end of school, getting the kids ready for camp, the bill deadlines for the legislative session and the pain that I’ve been experiencing.

As a quick recap, Rabbi Wolfe did an absolutely lovely job of leading the ceremony – drawing in everyone. We burned that terrible document that spoke to my demise. We planted a pomegranate tree on top of the ashes. We shared love and laughter and some sorrow. The highlight of the day was when my dear friend from childhood, Sarah Tunik, read a poem that she had written for the occasion (inspired by Maya Angelou’s Still I Rise ):

You may write me off as history

With your fancy charts that lie

You may quote the stats and frequencies
But still, the outlier, I'll rise.

Does my confidence surprise you?
Why are you beset with gloom?
'Cause I walk like I've got life
instead of calling for my tomb.

Just like moons and like suns,

With the certainty of tides,
Just like hopes springing high,
Still I'll rise.

Did you expect to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.

You may write about my ending,
You may cut out my insides,
You may radiate and then sedate,
But still, like air, I'll rise.

Does my longevity shock you?
Does it come as a surprise?
That when you read my stars
I made ashes from the lies?

Out of the fire,
I rise
Up from a hospital bed
I rise
I'm a great field of chodosh[1], wheat
Bending and blowing, to grow and not beat
There will be no harvest; I count my own days
I rise
Up from the fire, with spark and with praise
I rise
Bringing the strength of friends wide and near

I still survive, with hope, and not fear.

I rise
I rise
I rise.

As part of the ceremony, Ellie wrote a poem that she shared with everyone:

Health can come from drugs and drugs,

But it could also come from love and hugs.
Health can come from praying, too.
But in this service, it comes from all of you.

A huge thank you to everyone who was able to join us for the ceremony. It meant so much to our family to have so many friends envelope us with their support.

In other news, many of you are aware that I’ve been in a significant amount of pain for the last couple of months. We had many possible causes for the pain: internal hemorrhoids, nerve damage from past surgeries, scar tissue, shortened colon issues, potential new food allergies. I went in for a CT to try to figure out what it was, but nothing showed up on the CT. I finally convinced the colorectal surgeon to order a colonoscopy.

On Thursday I went in for the colonoscopy. The doctor was sure that we wouldn’t see any cancer since nothing had been seen on the CT scan. Unfortunately, he was wrong. Hiding in my scar tissue was a tumor that measured 2-3 cm in size. The mystery was solved as to why I was in so much pain.

This is not good. I don’t know what the next steps will be. My prayer is that we can come up with an option that does not involve removing my colon. I’m guessing that we will begin with radiation – which doesn’t sound pleasant, but it would be a heck of a lot better than removing my colon. I also hope to stay on my wonderful trial.

On Tuesday, I’ll be meeting with Dr. Fisher to discuss his recommendations for next steps. While this tumor is causing a lot of pain, it is not in a vital organ. People live without colons. The main goal is to live.

I’m so tired of the struggle. Fortunately, the healing ceremony came at the right time. I need the strength of others to pull me through this difficult time. Please keep me in your prayers. I have a feeling that I don’t have an easy road ahead and I will be leaning on all of you to support me as I conquer this new challenge.

[1] “chodosh” is wheat, not to be eaten before the counting of the omer is finished