When I started writing this blog entry on Friday, I had written that it was my best chemo experience yet. Even with the ridiculous (and really cold!) penguin caps, I still was happy (relatively speaking) with how Thursday played out and how I was feeling on Friday. Then came a really really tough weekend. But after some minor adjustments, I’m feeling ok once again. (So – if you’re in a hurry – that’s the quick version of what I’m about to write out – so you can go about your day and know you haven’t missed anything.)
On Thursday, Pat and I headed across the Bay Bridge for my first chemo appointment with Dr. Smith. Elizabeth (the woman who had handed me her penguin caps the day before), met us at my appointment so that she could show Pat and our friend Linda (who also came to the appointment) how to properly put on the caps and to walk through the exact timing with us. Not only did Elizabeth work with us to make sure that we had the system down – she actually stayed for my entire 3 hour chemo appointment to help us. Once again, I was blessed with an incredible person who came forward to help me along my journey. It never ceases to amaze me the amount of kindness that is out there.
Speaking of kind human beings – it was recently brought to my attention that I rarely mention my husband in this blog. That was not on purpose. Pat, my husband, has been the most unbelievable partner throughout this incredibly challenging (hellacious) experience. He has been there for 99% of my doctor appointments, my chemo treatments, my anxious calls throughout the day, my late night worries and has been a rock not only for me, but for our children, our parents and our friends. I cannot overemphasize how incredible he has been. I don’t know what I would have done without him.
Now – back to Thursday… Dr. Smith actually put in the IV himself to deliver the chemo and sat with me until I was comfortable. He then checked in on me regularly to see how I was doing. While he gave me many a funny look about the penguin caps – he couldn’t dismiss their effectiveness when I had my new friend Elizabeth with me sporting a full head of hair 2 days after her breast cancer chemo.
After the fun dosage of Irinotecan and Avastin and with a healthy dose of anti-nausea meds, I headed home to rest (and continue changing penguin caps for the next 4 hours). I actually felt very well and that feeling of wellness and energy continued throughout the next day.
Unfortunately, that feeling did not last. I began taking Xeloda on Friday night and immediately began to have trouble. I spent most of the weekend in bed. I spoke with Dr. Smith on Sunday and he cut back my dosage. On Monday afternoon, I was beginning to feel much better and as I write this, I’m feeling almost 100%.
I have also returned to work. It’s good to be back. I actually have times throughout the day that I forget that I’m battling cancer. It’s nice to have those little breaks. This is a tough time, both physically and mentally. I am so grateful for my family, friends and people who I don’t know who I hear have me on their prayer lists.
My dear friend asked me the other day if I had the chance if I would switch my life (both the good and the bad) for someone else’s life (not knowing who that someone else may be), would I do so? While my first instinct was to say “yes” because this has been such a scary and difficult time, I realized that in fact, my answer is “no.” I am blessed in so many many ways.
Wednesday, September 22, 2010
Wednesday, September 15, 2010
Round 3 - Here I Come!
So tomorrow’s the big day. The start of round 3. I really was hoping that I’d never be saying those words. But life continues to throw me a curveball, and I’ll continue to do everything I can to hit it out of the ballpark.
When I asked Dr. Smith what I should be doing to prepare for tomorrow’s chemo, he told me to get exercise and hydrate myself. So tonight I went to the gym and I’m drinking large amounts of water and tea. Tomorrow morning I will plan to work out some more before heading to Smith Integrative Oncology to get the fabulous cocktail that will kill my cancer.
The last 24 hours have been filled with another cancer related effort – trying to figure out how to save my hair. Yesterday, when I was speaking with Dr. Smith’s nutritionist, I jokingly asked her if there was anything that I could eat that would prevent hair loss. She then told me that she had heard of people using the Penguin Cold Cap system. The theory is that the cold cap freezes the hair follicles which prevents the chemo from being absorbed. I looked into it last night, and since the company was located in England, I left a message on their machine asking if there was any possibility of obtaining the Penguin caps by Thursday.
I received a call at 7 am from the President of the company saying that he wanted to help me. Although I wasn’t giving them enough time to ship me the caps, he told me that he’d try to find someone locally who would lend them to me. Amazingly enough, within an hour, he was calling me back to let me know that there was a woman in San Francisco who just finished her chemo yesterday and was more than happy to pass them off to me. So – I went to her home, she gave me all of her supplies and demonstrated how to attach the caps to my head (there will be 14 of them and I’ll be changing them every 30 minutes). She then offered to meet me at my chemo appointment tomorrow to make sure that I have the system down and to teach Pat the best way to put on the cap. The people that I have met on this journey continue to amaze me with their incredible generosity.
But – the most phenomenal thing was that she was a breast cancer patient and had a full head of hair! I spoke with several other breast cancer penguin cap users today that had the same story. They all had most, if not all, of their hair after they finished chemo.
So tomorrow – with the first of many caps on my head – I’ll be heading to chemo. I may look funny – but heck – I have hope that I’ll have a full head of hair when I’m done with this.
At 11:30 am I’ll be starting chemo. Please send me your prayers and positive thoughts. My body is strong and I’m feeling energized. This time I’m going to win. I just know it.
When I asked Dr. Smith what I should be doing to prepare for tomorrow’s chemo, he told me to get exercise and hydrate myself. So tonight I went to the gym and I’m drinking large amounts of water and tea. Tomorrow morning I will plan to work out some more before heading to Smith Integrative Oncology to get the fabulous cocktail that will kill my cancer.
The last 24 hours have been filled with another cancer related effort – trying to figure out how to save my hair. Yesterday, when I was speaking with Dr. Smith’s nutritionist, I jokingly asked her if there was anything that I could eat that would prevent hair loss. She then told me that she had heard of people using the Penguin Cold Cap system. The theory is that the cold cap freezes the hair follicles which prevents the chemo from being absorbed. I looked into it last night, and since the company was located in England, I left a message on their machine asking if there was any possibility of obtaining the Penguin caps by Thursday.
I received a call at 7 am from the President of the company saying that he wanted to help me. Although I wasn’t giving them enough time to ship me the caps, he told me that he’d try to find someone locally who would lend them to me. Amazingly enough, within an hour, he was calling me back to let me know that there was a woman in San Francisco who just finished her chemo yesterday and was more than happy to pass them off to me. So – I went to her home, she gave me all of her supplies and demonstrated how to attach the caps to my head (there will be 14 of them and I’ll be changing them every 30 minutes). She then offered to meet me at my chemo appointment tomorrow to make sure that I have the system down and to teach Pat the best way to put on the cap. The people that I have met on this journey continue to amaze me with their incredible generosity.
But – the most phenomenal thing was that she was a breast cancer patient and had a full head of hair! I spoke with several other breast cancer penguin cap users today that had the same story. They all had most, if not all, of their hair after they finished chemo.
So tomorrow – with the first of many caps on my head – I’ll be heading to chemo. I may look funny – but heck – I have hope that I’ll have a full head of hair when I’m done with this.
At 11:30 am I’ll be starting chemo. Please send me your prayers and positive thoughts. My body is strong and I’m feeling energized. This time I’m going to win. I just know it.
Sunday, September 12, 2010
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.
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.
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