Port Is In - Chemo is about to Begin

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

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

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

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

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

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

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

 

 

Goodbye PDL-1 - Hello Chemo Blast!

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

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

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

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

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

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

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

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.