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....

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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.

Limping Along

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

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.