Attention! On Monday July 21, 2014, I will be a guest on the Stupid Cancer Show. It airs at 8:00pm EDT. This will most likely be the first of several shameless self-promotional posts over the next week. If you miss it live, it will still be available on the website afterwards. Or maybe you'll just want to hear the sexy sound of my chemo effected voice. Here's the website so you don't miss a second of the Stupid Cancer Show
Disclaimer: This is the part about how I'm not a doctor. I'm not a doctor, but I wanted to share some of the alternative medicines that I've added to my treatment. It might not be for everyone, but I'm hopeful from the early results that it'll be beneficial to me. Before you start any alternative medicines, check with your oncologist. Certain herbal supplements can decrease the effectiveness of certain chemotherapy drugs by up to 60%! This is especially relevant to young adults who don't always think to name their all natural supplements when the doctor asks what medications they're taking.
Acupuncture: I've had three acupuncture treatments so far. I've started out receiving these treatments at my Cancer treatment center, but within the next week or so, they'll refer me to an acupuncturist closer to home. When I first met with the doctor/acupuncturist, my main goal was to address the neuropathy in my fingers and toes. He told me it would also possibly help with nausea, fatigue, constipation, and getting a good night sleep. One unexpected and immediate benefit was that the pain which has been in my leg from a blood clot last Halloween is gone! Acupuncture helps with circulation and has apparently done the trick. If you haven't had acupuncture before, it is incredibly relaxing. They insert the needles, which don't hurt and you barely feel, and then they leave you on the table with a warm lamp on your feet for 30 to 40 minutes. The first time, I thought, "Forty minutes of lying here staring at the ceiling, great!" But I was so relaxed that when he came back, I thought, "Oh, you're back already?" The relaxation points are on your ears, by the way, who knew? I have been sleeping much better, have slightly less neuropathy in my toes and after my most recent treatment I had a full hour of no numbness in my fingers for the first time since last October!
Turmeric: Turmeric is one of the most effective anti inflammatory spices we have and when you're fighting cancer, you're essentially fighting inflammation. My nutritionist introduced me to turmeric tea soon after I was diagnosed and I have been drinking it daily since then. Recently, I read an article that said scientific studies had shown turmeric to be effective in helping to treat colon and pancreatic cancers beyond just treating inflammation, but you couldn't possibly add enough turmeric to your diet, you would need a supplement. Coincidently that same week, my mother bought me a turmeric supplement. I brought the supplement to my next appointment. My oncology fellow looked it up in a database ( you can access it too at Integrative Medicine about Herbs) and was excited to find links to articles about fighting colon and pancreatic cancer (which are both closely related to my stomach cancer) with turmeric, there didn't seem to be any interactions with my medications or chemo drugs, but they checked with the pharmacy as well. The pharmacy initially gave the ok, but then called during my infusion and told me that the protocol for my trial drug said no herbal supplements. I was mad. When I next saw my oncologist, he said he'd gotten 3 separate emails from the pharmacy about me and my turmeric, all saying different things. So he reread the protocols and they turned out to say that herbal supplements were to be discouraged. My doctor explained this was so the drug companies could feel confident that their drug was the only thing impacting the outcome. But my doctor also said he doesn't care about that, so I should take it if I want. The only possible side effect is that the whites of my eyes might turn yellow. But since we know that in advance, my doctors won't worry that I have jaundice or am turning into a werewolf.
Oncologist/Alternative Medicine Doctor: I recently met with an Oncologist who also specializes in alternative medicine. He basically reinforced what we already know about good nutrition, exercising despite the fatigue, deep breathing and meditation/relaxation. He also recommended fish oil and a B vitamin supplement.
Attention Again! Second shameless self-promotion of the day. Tune in to the Stupid Cancer Show at 8pm on Monday the 21st with special guest, me!
Showing posts with label stupid cancer. Show all posts
Showing posts with label stupid cancer. Show all posts
Sunday, July 13, 2014
Monday, June 2, 2014
The Pros and CONS of Cancer
If you know me, this post is going to completely blow my anonymity. But I'm pretty sure that even without this post, if you read this blog, you'll either ask right away if it's me or tell me I should totally meet the author, because her story is just like mine. And in case you missed my excited earlier post, I'm going to be on Stupid Cancer's podcast in July, which isn't going to help with the anonymity either.
When I was a teenager, I had to go to Boston Children's Hospital. I wore Converse sneakers because it was the early nineties, and like I said, I was a teenager. Both a doctor and an orderly commented something like, "Nice sneaks". My dad and I have often reminisced about this. So when at thirty five I was diagnosed with stomach cancer and the decision was made to go to Dana Farber, I thought, "Well I know how to get special attention at fancy Boston hospitals" and I wore Converse.
My friend who came with us to that first appointment caught on and we were talking about it in front of my sister, who said, "Well, I'll just wear my Cons on your treatment days" (she already has enough pairs to wear an appropriately different pair each day of Spirit Week at the school where she teaches). Another friend overheard all this and started a Facebook campaign so that on my first treatment day my homepage was flooded with people wearing Chucks. Within a few weeks, there were over 100 people wearing Converse sneakers for me on the days I had treatment or tests. Now, I think it's closer to 200. These include friends, family, my coworkers, my students, my camp counselor from when I was eight, people from church, and the friends and family of all those listed above. Complete strangers are wearing Chucks for me. People have posted pictures from South Africa, Costa Rica, Australia, Paris, London, Jerusalem, the press room of the White House as well as the State of the Union address, and the Great Wall of China. I've put many of these pictures into a book I made on Blurb. The week after I finished the book, my cousin posted a picture of her snorkeling in Hawaii with her Cons, so I had to start making another book.
On the day of my second treatment, my oncologist walked in and commented on my Chucks, "Orange today". So I explained my theory about getting special attention at fancy Boston hospitals. He replied, "Well its the first thing I noticed about you today and commented on, so it seems perfectly logical to me".
Sometimes it's overwhelming, all of this love and support, but I know I couldn't do this without them.
When I was a teenager, I had to go to Boston Children's Hospital. I wore Converse sneakers because it was the early nineties, and like I said, I was a teenager. Both a doctor and an orderly commented something like, "Nice sneaks". My dad and I have often reminisced about this. So when at thirty five I was diagnosed with stomach cancer and the decision was made to go to Dana Farber, I thought, "Well I know how to get special attention at fancy Boston hospitals" and I wore Converse.
My friend who came with us to that first appointment caught on and we were talking about it in front of my sister, who said, "Well, I'll just wear my Cons on your treatment days" (she already has enough pairs to wear an appropriately different pair each day of Spirit Week at the school where she teaches). Another friend overheard all this and started a Facebook campaign so that on my first treatment day my homepage was flooded with people wearing Chucks. Within a few weeks, there were over 100 people wearing Converse sneakers for me on the days I had treatment or tests. Now, I think it's closer to 200. These include friends, family, my coworkers, my students, my camp counselor from when I was eight, people from church, and the friends and family of all those listed above. Complete strangers are wearing Chucks for me. People have posted pictures from South Africa, Costa Rica, Australia, Paris, London, Jerusalem, the press room of the White House as well as the State of the Union address, and the Great Wall of China. I've put many of these pictures into a book I made on Blurb. The week after I finished the book, my cousin posted a picture of her snorkeling in Hawaii with her Cons, so I had to start making another book.
On the day of my second treatment, my oncologist walked in and commented on my Chucks, "Orange today". So I explained my theory about getting special attention at fancy Boston hospitals. He replied, "Well its the first thing I noticed about you today and commented on, so it seems perfectly logical to me".
Sometimes it's overwhelming, all of this love and support, but I know I couldn't do this without them.
Tuesday, May 20, 2014
Why me?!
From talking to and reading about other cancer patients and survivors, I know it's very common to ask, "Why me?" However, I think what many people are really asking is "How did I get cancer?", not, "Why?" This seems especially true for young adults. I mean, we're not supposed to have to worry about cancer for another thirty years, right?
"Was it something in the water? The soil?" "Did I not eat enough vegetables? Not exercise enough?" "Do I live too close to the power lines? Was it all those plastic water bottles?"
I happen to know how I got cancer. I tested positive for a genetic mutation that increases your risk of stomach cancer to 80% and makes it especially more likely in younger adults. This is called Hereditary Diffuse Gastric Cancer and the gene is CDH1. My paternal grandmother died of stomach cancer at age 45 and her father died of stomach cancer at a young age as well. This genetic mutation is very rare and only 1/3 of those suspected of having it test positive. For more information about CDH1you can visit http://www.nostomachforcancer.org or for more information about stomach cancer in general, including the story of someone else with Hereditary Diffuse Gastric Cancer who was diagnosed at age 20, listen to http://www.stupidcancer.org/show/308/
My testing positive for this genetic mutation led to other family members being tested. My father tested positive and subsequently had his stomach removed preemptively. This is the recommendation because it's so difficult to catch stomach cancer at an early stage. Hereditary Diffuse Gastric Cancer is especially hard to catch because it grows in the lining of your stomach, making it impossible to see on a PET or CT scan and very easy to miss even when biopsies are taken during an endoscopy. Three other relatives have also tested positive and are weighing their options and three more now need to be tested.
So that's my "How", which brings us to the "Why me?"
Since being diagnosed and finding out there was a genetic cause, I've struggled not only with concern for my family, but also with the "Why me". I've read about other families with a history of stomach cancer that is devastating. People write about having watched five or six family members succumb to this disease before the mutation was identified and testing became available. Although devastating for these families, their history put them on somebody's radar or increased their personal research, so when testing became available, they were ready. But in my family, only two cases of stomach cancer and the fact that my dad was alive and well never raised questions or concerns, even though I've seen multiple GI specialists in my life due to various digestive problems.
Now I would never wish that one or more of my family members would have been cursed with this disease even if it had led to an earlier diagnosis or preemptive surgery for me. (In my imagination, we have some long lost relatives, who I don't know and I don't care about, who contact us to let us know we're at risk and to go for testing.) But it still brings up, "Why me?" Why am I the one to have this disease? Why am I the reason we discovered as a family that we were at risk? Why didn't I have the opportunity for preventive surgery? Why didn't we question our history and talk to a geneticist two years ago? Why me?
Most people don't know how they got cancer. Although personally I think that the next few years will provide more and more people with a genetic explanation for their cancer, right now most folks are still left questioning power lines and water bottles. And as for the "why", maybe there is no answer.
"Was it something in the water? The soil?" "Did I not eat enough vegetables? Not exercise enough?" "Do I live too close to the power lines? Was it all those plastic water bottles?"
I happen to know how I got cancer. I tested positive for a genetic mutation that increases your risk of stomach cancer to 80% and makes it especially more likely in younger adults. This is called Hereditary Diffuse Gastric Cancer and the gene is CDH1. My paternal grandmother died of stomach cancer at age 45 and her father died of stomach cancer at a young age as well. This genetic mutation is very rare and only 1/3 of those suspected of having it test positive. For more information about CDH1you can visit http://www.nostomachforcancer.org or for more information about stomach cancer in general, including the story of someone else with Hereditary Diffuse Gastric Cancer who was diagnosed at age 20, listen to http://www.stupidcancer.org/show/308/
My testing positive for this genetic mutation led to other family members being tested. My father tested positive and subsequently had his stomach removed preemptively. This is the recommendation because it's so difficult to catch stomach cancer at an early stage. Hereditary Diffuse Gastric Cancer is especially hard to catch because it grows in the lining of your stomach, making it impossible to see on a PET or CT scan and very easy to miss even when biopsies are taken during an endoscopy. Three other relatives have also tested positive and are weighing their options and three more now need to be tested.
So that's my "How", which brings us to the "Why me?"
Since being diagnosed and finding out there was a genetic cause, I've struggled not only with concern for my family, but also with the "Why me". I've read about other families with a history of stomach cancer that is devastating. People write about having watched five or six family members succumb to this disease before the mutation was identified and testing became available. Although devastating for these families, their history put them on somebody's radar or increased their personal research, so when testing became available, they were ready. But in my family, only two cases of stomach cancer and the fact that my dad was alive and well never raised questions or concerns, even though I've seen multiple GI specialists in my life due to various digestive problems.
Now I would never wish that one or more of my family members would have been cursed with this disease even if it had led to an earlier diagnosis or preemptive surgery for me. (In my imagination, we have some long lost relatives, who I don't know and I don't care about, who contact us to let us know we're at risk and to go for testing.) But it still brings up, "Why me?" Why am I the one to have this disease? Why am I the reason we discovered as a family that we were at risk? Why didn't I have the opportunity for preventive surgery? Why didn't we question our history and talk to a geneticist two years ago? Why me?
Most people don't know how they got cancer. Although personally I think that the next few years will provide more and more people with a genetic explanation for their cancer, right now most folks are still left questioning power lines and water bottles. And as for the "why", maybe there is no answer.
Saturday, May 17, 2014
Stupid Stomach Cancer on Stupid Cancer Blogtalk Radio
On Monday, May 19th, 2014 T 8ET, Stupid Cancer will broadcast about Stupid Stomach Cancer.
"There are 22,000 diagnoses of Stomach Cancer each year, which a significant percentage increasing in young adults. Join is as we welcome Debbie Zelman (Founder, Debbie's Dream Foundation) and AYA stomach cancer survivor Jess Mac for an initiative conversation about this oft undiscussed disease." -Stupid Cancer http://www.blogtalkradio.com/stupidcancershow/2014/05/20/stupid-stomach-cancer#.U3czR1Q-NdQ.twitter
I am really looking forward to this and have set all the reminders on my phone and around my house so I won't miss it.
Along the same line, Stupid Cancer retweeted and posted my blog to Facebook. This may be what led many of you here. Then, yesterday, I came home from infusion, tired and nauseous, to see that Matthew Zachery the CEO of Stupid Cancer tweeted me to say they'd love to have me as a guest on their radio show! I almost peed my pants! I'm so excited about this possibility!
"There are 22,000 diagnoses of Stomach Cancer each year, which a significant percentage increasing in young adults. Join is as we welcome Debbie Zelman (Founder, Debbie's Dream Foundation) and AYA stomach cancer survivor Jess Mac for an initiative conversation about this oft undiscussed disease." -Stupid Cancer http://www.blogtalkradio.com/stupidcancershow/2014/05/20/stupid-stomach-cancer#.U3czR1Q-NdQ.twitter
I am really looking forward to this and have set all the reminders on my phone and around my house so I won't miss it.
Along the same line, Stupid Cancer retweeted and posted my blog to Facebook. This may be what led many of you here. Then, yesterday, I came home from infusion, tired and nauseous, to see that Matthew Zachery the CEO of Stupid Cancer tweeted me to say they'd love to have me as a guest on their radio show! I almost peed my pants! I'm so excited about this possibility!
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