It's Been Awhile (But I Have a Good Excuse)

I know, I know, I know. It has been a very long time since I’ve written a blog. Several people have contacted me fearing what my lack of communication means. In a nutshell – it means that I’ve been really really busy. So this is what I’ve been up to:

Travel to Europe

So – our family had scheduled a trip to go to Germany for a wedding at the end of August. My Spanish brother (our former exchange student) was marrying a lovely German girl at a castle in the Black Forest. We had decided to go to France before Germany since Ari informed us that she has wanted to go to Paris her WHOLE LIFE (and heck - she had already hit the old age of 6). However, as you know, our world turned upside down this summer and the possibility of us actually making the trip went down dramatically. My surgery ended up lasting 6.5 hours, I woke up with a hell of an incision as well as an ileostomy and the trip was only 3 weeks away. A sane person would have canceled the trip.

But instead, we climbed the Eiffel Tower, ate croissants and spaetzle and danced at the wedding until 3 am (the wedding actually lasted until 8 am – ya gotta love Spaniards). Going to Europe was one of the best decisions that I have made. It was not the easiest trip, but it was a wonderful trip.

Cancer Treatment – the Discovery Phase

We arrived home the evening of August 31st. The girls started school on September 1st and I hopped a plane to Chicago on that same day to begin my efforts to get second opinions. In Chicago, I was met by a girlfriend who I hadn’t seen since we lived in Spain 20 years ago, who housed me and took a couple of days off to take me to appointments. (It is truly remarkable how generous everyone has been – with their time, their support and their love.) I met with the Block Center on the 2nd and Northwestern on the 3rd and then headed back to the Bay Area. After spending the weekend trying to get caught up on the home front, I went to visit UCSF on Tuesday, flew down to UCSD and spoke with Johns Hopkins on Wednesday and finally circled back to meet with Dr. Fisher on Thursday to discuss next steps. I now feel like an expert on the options for a woman diagnosed with Stage 4 colon cancer. After setting my course of treatment with him, I set up my first chemo appointment for September 16th.

Changing Direction

So – after meeting with the many oncologists and talking to Dr. Fisher, I was moving forward. However, prior to the meeting with Dr. Fisher, I scheduled one last second (ok - I guess it technically would be my seventh) opinion with Dr. Garrett Smith, an oncologist who is not associated with a major cancer center, but is doing innovative cancer treatment in San Francisco. Basically, this means that he focuses not only on the western medicine, but also incorporates eastern medicine. His office has a nutritionist, acupuncturist, fitness expert, Chinese medicine specialist and massage therapist. (As you are all aware – this has been my approach to my cancer treatment - but I have pieced together my own team.) He is delivering chemo in a chronomodulated fashion and is sending his patients worldwide to get the best individualized cancer treatment. His office is cheery and inviting and he delivers the chemo himself. He was filled with hope for my future and is an amazingly loving and caring person. Furthermore, when I had mentioned his name to Dr. Fisher the day before, he lauded Dr. Smith and said that he refers patients to him frequently and helps him with difficult cases.

So, after much deliberation this weekend, I have decided to augment my team. I will be moving my chemo treatment from Stanford to Smith Integrative Oncology in San Francisco (which will also make it much easier for those of you who want to come to support me during chemo to do so). This was a very hard decision because I love George Fisher and I think very highly of Stanford. However, just the idea of going down to the Stanford Infusion Center once a week to get chemo distresses me. Although the facility is beautiful, it is filled with cancer patients that look incredibly sick. It is a very depressing place. I have determined that at this point, I need to be in a place that inspires me and lifts my spirits. Dr. Smith’s personality and approach as well as his facility is that place.

Tomorrow I will call Dr. Fisher to tell him of my decision. I am nervous and a little sad and wondering if I am completely crazy, since he truly is the king of colorectal oncology and Stanford is a top notch institution. But, I have to remember that I’m not leaving him and I will be keeping him updated on my care as I travel down this new path

Which brings me to my most recent diagnosis. Unfortunately, I have now been told by several oncologists that we are no longer talking about a cure for me – it’s now about tumor suppression and trying to stay alive as long as possible, with the hope that they find a cure while I’m still alive. That was a huge blow to me. However, people can live for years – and I plan to do so.

Chemo – What to Expect

On Thursday, September 16th, I will begin my chemo regimen. I will be taking Irinotecan, Avastin and Xeloda. I will be hooked up to a drip system every two weeks for the Irinotecan and Avastin and will take Xeloda in pill form. The potential side effects are extreme diarrhea, suppressed immune system, hair thinning, fatigue, dry hands and feet and nausea.

I will get this chemo treatment for about 2-3 months, they will take another CT scan and then, if things are going well, I’ll do another 2-3 months. After that, we’ll revert to maintenance chemotherapy (most likely getting rid of Irinotecan and lowering the dosage of the other chemo drugs) and I will remain on chemo for an indefinite period of time. It may be years before I can go off of chemo (but heck – if I get “years” I’ll take it!)

The Ileostomy

As you are aware, I am very anxious to reverse the ileostomy and go back to a bagless existence. Unfortunately, it’s just not meant to be for the time being. After discussions with both Johns Hopkins and Dr. Smith, I am convinced that I should leave it in place for about a year. First, it will help me with the diarrhea side effect of the irinotecan. Dr. Mulcahy of Northwestern told me that she has patients who ask if they can get the bag put on because the diarrhea is so extreme. (I’m trying to find the silver lining in this.)

In addition, the chemo that I’ll be taking cannot be given anytime near a surgery. It could easily result in a fatality, since it literally could open up any wound that is not completely healed and cause massive bleeding. Since our goal is to kill the microscopic levels of cancer, it does not make sense to stop my chemo until we’ve completely saturated my body. In addition, if we wait a year, it will give the surgeon a chance to see inside my body once again when they reverse the ileostomy rather than relying on a CT scan. So – they have effectively convinced me that leaving it on for a year is the safest course of action. I don’t like it – but life is much more important to me than the inconvenience of having a stoma.

The Wrap Up

I know that this is a lot of information. It has been quite a crazy ride for me – trying to figure out the best way for me to prolong my life. I could have written so much more – but I wanted to give you a thumbnail sketch of what’s going on here.

On Friday I returned to work after being gone for 7 weeks. It’s good to be back and I think that my medical condition will help me keep work in perspective. I am not sure how difficult it will be for me to work during this next chemo round. I am just taking one day at a time.

As a family, we have become closer than ever. Pat and I have started having real conversations with the girls about what’s going on. We didn’t realize that without knowledge, the girls were making up their own stories about what was going to happen. It is a tough time for all of us – but we are surviving and thriving.

We don’t know what the future has in store for me. But I wake up every morning with gratitude for the day. I work hard to find joy in the little moments. I am so grateful that I have a phenomenal medical team as well as an unmatched support system.

Thank you so much for everything that you have done to support me and my family. I know that I am seriously behind on my thank you notes and return e-mails – but as you can see – life has been fairly full lately. Once chemo begins on Thursday, I expect that life will calm down.

I hope that you are all having a terrific beginning of fall. This last week we celebrated the Jewish New Year. Although this will be a difficult year, I am filled with hope and strongly believe that I will be celebrating this wonderful holiday many many more times.

L’shana tova.