It's been almost a month since my last post. I'm sure you've all been on the edge of you seats. The reason for the delay? I've been on a "treatment holiday" from chemo! Woo Hoo! That means I've been out there living it up so much that I haven't had time to write.
I start treatment again in a little over a week. I'll also be having an MRI that day to investigate some spots on my liver. These spots have been there since my diagnosis and the consensus has been that they weren't cancer. But after my most recent ct scan, the two radiology reports disagreed with each other, so hence the MRI to settle their dispute. Never a dull moment with me. I like to keep those world class doctors on their toes!
During my treatment holiday, I've been back at work, full time, every day. It's been great. I'm feeling much less fatigued and the neuropathy and mouth sores have decreased. We also purchased a new car! I'll blog about that decision soon as a follow up on my "To buy or not to buy" post.
In the mean time, as you nail-bitingly await my next post, you can listen to me on The Stupid Cancer Show or read my guest blog on Hope for Young Adults With Cancer.
Finally, I wanted to share my latest awesome idea. If my treatment schedule stays the same, I'll have infusion on Halloween, meaning I'll have to wear my Wonder Woman costume to the hospital instead of to work. So I've decided to go reverse trick or treating in the infusion suite. Instead of going door to door and getting treats because of my awesome costume, I'll go infusion chair to infusion chair and give out treats (probably rubber bracelets if I can find them cheap enough). I know, you wish you'd thought of this first, but instead of moping about that, steal my idea and go reverse trick or treating yourself. We'll start a revolution, spreading awareness and joy as we go!
Thursday, September 11, 2014
Thursday, August 14, 2014
It's My Party and I'll Cry if I Want To
Tomorrow marks the one year anniversary of my diagnosis with Stage IV gastric cancer.
I've spent the last two weeks trying to figure out how to observe this day. My husband has been encouraging me to do something fun and exciting. A friend of mine who had uterine cancer marked her one year anniversary by climbing a very steep hill in her home town, just because she could. Some of you reading this must have marked similar anniversaries. What did you do?
It's strange to think of celebrating one year of having cancer. On the other hand, my treatment has gone better than expected and the fact that I am still here is certainly reason to celebrate! But still, nothing came to mind when asked how I wanted to observe this day. Nothing seemed appropriate. I thought and I thought, talked with some friends, but still, nothing. I needed a way to both celebrate and grieve at the same time.
While this year has been promising in terms of my treatment, it's also been a year of intense changes and loss. I've lost my old "normal" life. The satisfying day to day routine of my old life is gone. The professional goals I'd set for my self now seem unattainable. Right after my diagnosis things were unpredictable and surprising. Then came a period of "my new normal", which may have been predictable, but was not the satisfying routine of only a few months before. Now I often describe things as "par for the course". Fatigue, neuropathy, and everything thing else are just the same old same old.
Next week, I have a ct scan. If it shows that things remain stable, I'll take a little break from chemo, probably four to six weeks. This will provide a break from the same old same old. Hopefully my side effects will diminish and it will provide me the opportunity to attempt my old routines without the interruption of treatment and the recovery time that requires.
So tomorrow, my husband and I will have breakfast with one friend, lunch with another, and dinner with still others. It'll be my party, but I'll cry if I want to.
Update: I didn't cry. Instead, I hugged a friend in a penguin suit at Dunkin' Donuts.
I've spent the last two weeks trying to figure out how to observe this day. My husband has been encouraging me to do something fun and exciting. A friend of mine who had uterine cancer marked her one year anniversary by climbing a very steep hill in her home town, just because she could. Some of you reading this must have marked similar anniversaries. What did you do?
It's strange to think of celebrating one year of having cancer. On the other hand, my treatment has gone better than expected and the fact that I am still here is certainly reason to celebrate! But still, nothing came to mind when asked how I wanted to observe this day. Nothing seemed appropriate. I thought and I thought, talked with some friends, but still, nothing. I needed a way to both celebrate and grieve at the same time.
While this year has been promising in terms of my treatment, it's also been a year of intense changes and loss. I've lost my old "normal" life. The satisfying day to day routine of my old life is gone. The professional goals I'd set for my self now seem unattainable. Right after my diagnosis things were unpredictable and surprising. Then came a period of "my new normal", which may have been predictable, but was not the satisfying routine of only a few months before. Now I often describe things as "par for the course". Fatigue, neuropathy, and everything thing else are just the same old same old.
Next week, I have a ct scan. If it shows that things remain stable, I'll take a little break from chemo, probably four to six weeks. This will provide a break from the same old same old. Hopefully my side effects will diminish and it will provide me the opportunity to attempt my old routines without the interruption of treatment and the recovery time that requires.
So tomorrow, my husband and I will have breakfast with one friend, lunch with another, and dinner with still others. It'll be my party, but I'll cry if I want to.
Update: I didn't cry. Instead, I hugged a friend in a penguin suit at Dunkin' Donuts.
Sunday, July 13, 2014
I'm Not A Doctor, But I'll Play One on A Podcast
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!
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!
Tuesday, June 24, 2014
Red in the Face: Skincare During Chemo
A friend of mine has a colleague who used to work in the cosmetic industry. She gave my friend some samples from PCA Skin (www.pcaskin.com) to pass on to me. She said they were very gentle products, made from many natural ingredients, and would be helpful for addressing some of the side effects of chemo therapy. This is an unsolicited product review of the samples she gave me, the creamy cleanser and the anti-redness serum.
Even before I started treatment, I used skin care products with as many natural ingredients as I could find. I've always had very sensitive skin and I also think that considering how many medications can now be administered by a patch and absorbed into your skin, I don't need to be applying chemicals to be absorbed into my skin. I also have a history of redness on my face, which was solved a few years ago when I gave up eating gluten (the purpose was to solve digestive issues, the improvement in my complexion was just an added bonus). Since starting treatment, I've experienced dry skin and over the last month or so, redness on my face.
The Creamy Cleanser: On the website, PCA describes this product as being very gentle and helpful in reducing redness. I found this to be true. It felt soothing on my face, lathered up nicely, and afterwards my face did appear less red. I would certainly recommend this product.
The Anti-redness Serum: I applied this product after washing my face and followed with my regular moisturizer as directed on the website. After a few minutes, my face began to feel like it was burning and became more red. I used the creamy cleanser to wash it off and felt much better. As stated above, I have very sensitive skin and that burning sensation is something I've experienced with many moisturizers and sun screens. This serum may be very effective for some people in reducing redness, but for someone with sensitive skin like me, I don't recommend it.
So there you go, my first unsolicited product review. Now send me more free stuff and I'll review it.
Update: After reading my review of their products, which I tweeted them, PCA was nice enough to send me a bottle of their Hydrating Serum. Now this stuff I really like. I applied it with my regular moisturizer and my face is extremely soft and smooth with no redness or irritation. Thank you PCA!
Even before I started treatment, I used skin care products with as many natural ingredients as I could find. I've always had very sensitive skin and I also think that considering how many medications can now be administered by a patch and absorbed into your skin, I don't need to be applying chemicals to be absorbed into my skin. I also have a history of redness on my face, which was solved a few years ago when I gave up eating gluten (the purpose was to solve digestive issues, the improvement in my complexion was just an added bonus). Since starting treatment, I've experienced dry skin and over the last month or so, redness on my face.
The Creamy Cleanser: On the website, PCA describes this product as being very gentle and helpful in reducing redness. I found this to be true. It felt soothing on my face, lathered up nicely, and afterwards my face did appear less red. I would certainly recommend this product.
The Anti-redness Serum: I applied this product after washing my face and followed with my regular moisturizer as directed on the website. After a few minutes, my face began to feel like it was burning and became more red. I used the creamy cleanser to wash it off and felt much better. As stated above, I have very sensitive skin and that burning sensation is something I've experienced with many moisturizers and sun screens. This serum may be very effective for some people in reducing redness, but for someone with sensitive skin like me, I don't recommend it.
So there you go, my first unsolicited product review. Now send me more free stuff and I'll review it.
Update: After reading my review of their products, which I tweeted them, PCA was nice enough to send me a bottle of their Hydrating Serum. Now this stuff I really like. I applied it with my regular moisturizer and my face is extremely soft and smooth with no redness or irritation. Thank you PCA!
Sunday, June 15, 2014
Freak Out!
There's lots of things to freak out about in general and even more when you have cancer. Before I was diagnosed, I used to freak out about every little noise when I was home alone. I was sure the burglars were going to break in at any moment. I've also self-diagnosed myself (with some help from WebMD) with just about every disease imaginable over the years. I mail all my bills at the post office so that no one will take them out of my mailbox and steal my identity. I go around the house unplugging things because I'm pretty sure that if you leave the toaster or your iPad unattended while plugged in, your house will burn down. My GPS is not set to my home address, so that no one can steal my car and then go straight to my house and rob me (see above about the burglars).
Now I have a whole new set of things to freak out about. Most people with cancer are familiar with "scanxiety", the anxiety one feels before a scan or test. My next scan is two weeks away and I'm already starting to feel anxious. The last few times I've been fine until the night before, but this time I'm nervous. I think my anxiety this time around is fueled by the fact that the last several scans have been so positive. I'm waiting for the other shoe to drop.
I have stomach cancer. The only symptoms I experienced before being diagnosed at stage IV were nausea and early satiation (feeling full after only a few bites of food). Those symptoms thankfully were resolved after two chemotherapy infusions. Occasionally, however, I have a day when I'm not hungry or don't eat very much and I freak out. I have to talk myself down by reminding myself that everyone has a day here or there when they don't feel hungry.
All this aside, with the help of medication, relaxation exercises, deep breathing, and not eating gluten, I'm the least depressed or anxious that I've been since I was a child. That seems weird considering my diagnosis, treatment, and prognosis. I guess I'll freak out about how incongruent that seems.
Now I have a whole new set of things to freak out about. Most people with cancer are familiar with "scanxiety", the anxiety one feels before a scan or test. My next scan is two weeks away and I'm already starting to feel anxious. The last few times I've been fine until the night before, but this time I'm nervous. I think my anxiety this time around is fueled by the fact that the last several scans have been so positive. I'm waiting for the other shoe to drop.
I have stomach cancer. The only symptoms I experienced before being diagnosed at stage IV were nausea and early satiation (feeling full after only a few bites of food). Those symptoms thankfully were resolved after two chemotherapy infusions. Occasionally, however, I have a day when I'm not hungry or don't eat very much and I freak out. I have to talk myself down by reminding myself that everyone has a day here or there when they don't feel hungry.
All this aside, with the help of medication, relaxation exercises, deep breathing, and not eating gluten, I'm the least depressed or anxious that I've been since I was a child. That seems weird considering my diagnosis, treatment, and prognosis. I guess I'll freak out about how incongruent that seems.
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!
Monday, May 12, 2014
To Buy or Not to Buy, That is the Question...
My husband (who would like to be referred to as Matt Damon for the purpose of anonymity) has recently been talking about replacing my car with a new one. My car is eight years old and has a lot of miles on it, but we have had almost no problems with it. Matt Damon's reasoning is that we drive two hours every other week for treatment and should have something more reliable and comfortable. His car, by the way, is much newer, but we never take that because he doesn't like driving it in the city and he's afraid I might puke all over it after treatment (which has NEVER happened in the almost NINE MONTHS we have been doing this).
I do understand that if we broke down on the way to or from treatment it would be majorly inconvenient. However, I can't help but perseverate about my prognosis. What if we buy a new car and in a few months I'm not driving at all? Or what if I'm gone? Matt Damon says he could just trade in both vehicles for a new one, no big deal. But it still seems irresponsible and like a waste of money to me. For heavens sake, I returned a skirt I'd bought just before my diagnosis because once I heard the prognosis I thought, "Well I won't be needing new clothes anymore". A friend of mine who is a cancer survivor told me she thought twice about buying the expensive shampoo after being diagnosed, thinking she might not be around to use the whole bottle.
Long term planning of any sort has really become a problem. Some friends we have vacationed with before, recently suggested taking an international trip to an island next February (it's mid-May now). Although it sounds wonderful, how can we plan that far in advance? I'm having trouble committing to things even a month in advance! And what about traveling internationally? I'd have about a zillion questions for my doctors before doing that. What if there was a complication and I needed to visit a hospital over seas? Do I really want to go to a hospital on a small tropical island? Could they medevac me back home? I'm sure that is not as exciting as it seems on TV. I mean, George Clooney and Noah Wyle aren't going to meet me on the roof, right?
I'm sure other folks with late stage cancer have the same thoughts. Comments, questions, advice... I really could use some.
Disclaimer: I am not really married to Matt Damon. However, my boy's wicked smaht.
I do understand that if we broke down on the way to or from treatment it would be majorly inconvenient. However, I can't help but perseverate about my prognosis. What if we buy a new car and in a few months I'm not driving at all? Or what if I'm gone? Matt Damon says he could just trade in both vehicles for a new one, no big deal. But it still seems irresponsible and like a waste of money to me. For heavens sake, I returned a skirt I'd bought just before my diagnosis because once I heard the prognosis I thought, "Well I won't be needing new clothes anymore". A friend of mine who is a cancer survivor told me she thought twice about buying the expensive shampoo after being diagnosed, thinking she might not be around to use the whole bottle.
Long term planning of any sort has really become a problem. Some friends we have vacationed with before, recently suggested taking an international trip to an island next February (it's mid-May now). Although it sounds wonderful, how can we plan that far in advance? I'm having trouble committing to things even a month in advance! And what about traveling internationally? I'd have about a zillion questions for my doctors before doing that. What if there was a complication and I needed to visit a hospital over seas? Do I really want to go to a hospital on a small tropical island? Could they medevac me back home? I'm sure that is not as exciting as it seems on TV. I mean, George Clooney and Noah Wyle aren't going to meet me on the roof, right?
I'm sure other folks with late stage cancer have the same thoughts. Comments, questions, advice... I really could use some.
Disclaimer: I am not really married to Matt Damon. However, my boy's wicked smaht.
Thursday, May 8, 2014
Two Interesting Articles
I found Tumbler tonight. I know, I'm a bit behind the times; I only got a Net Flicks account last week. Anyhow, Tumbler led me to this article from the NY Times, and I thought I'd share. Although a total gastrectomy is not in the cards for me right now, one family member has had the surgery preemptively and others are facing it soon, thanks to this great CDH1 gene we share.
It made me think of my all inclusive resort vacation just before my diagnosis. There was all this amazing gourmet food and chefs available to cater to my every whim, yet I could only eat a few bites of each meal due to early satiation, one of the few symptoms I experienced before being diagnosed with stage IV stomach cancer.
NY Times: I Won't Have The Stomach for This
A second article/opinion was written to follow up.
NY Times: Diagnosis of a Cancer:two Opinions
It made me think of my all inclusive resort vacation just before my diagnosis. There was all this amazing gourmet food and chefs available to cater to my every whim, yet I could only eat a few bites of each meal due to early satiation, one of the few symptoms I experienced before being diagnosed with stage IV stomach cancer.
NY Times: I Won't Have The Stomach for This
A second article/opinion was written to follow up.
NY Times: Diagnosis of a Cancer:two Opinions
Saturday, May 3, 2014
Comfort in, Dump Out
Although this has been a minimal problem for me, I can see it looming on the horizon and am sure it is a big problem for many patients and their immediate families. Below is a diagram depicting the "Comfort in, Dump out" theory. The idea is that the patient is at the center and is surrounded by concentric circles. Her immediate family members or supports are in the next closest ring. As the circle expand, so do the relationships. I, as the patient, can dump as much frustration and pain "out wards" as I want. People in the outer circles can also dump OUTWARDS; they can only provide comfort INWARDS. So my husband can say to my best friend, "I can't bear to see her like this." But a colleague can't say to my husband, "I can't bear to see her like this."
Here is a diagram to illustrate this idea.
How Not to Say the Wrong Thing (LA Times)
How To Respond to a Friend in Crisis (Shasta's Friendship Blog)
People want to help, they want to be supportive. Many have no idea what to say, others have no clue that what they think is supportive, really isn't. I really like that this diagram and these articles include immediate family, they too need support. I'd like to restate something I said in an earlier post, if you must say something, "I'm sorry you have cancer" is a good one. Likewise, "I'm sorry your wife, husband, mother, sister, girlfriend, whoever, has cancer" will do. Either of these can be followed with "Here's a gift card for a day of housecleaning from a service" or "Here's a gift card for groceries to be delivered".
On a more personal note, my most recent ct scan this week showed no change. Everything is stable. Considering that my last scan showed my lymph nodes were as small as they can get and since they can't measure the diffuse cancer in the lining of my stomach, this really is the best news we could get. For now, treatment continues status quo.
Here is a diagram to illustrate this idea.
This idea is not my own. It was forwarded to me from two friends who learned about it from the following blog and LA Times article.
How To Respond to a Friend in Crisis (Shasta's Friendship Blog)
People want to help, they want to be supportive. Many have no idea what to say, others have no clue that what they think is supportive, really isn't. I really like that this diagram and these articles include immediate family, they too need support. I'd like to restate something I said in an earlier post, if you must say something, "I'm sorry you have cancer" is a good one. Likewise, "I'm sorry your wife, husband, mother, sister, girlfriend, whoever, has cancer" will do. Either of these can be followed with "Here's a gift card for a day of housecleaning from a service" or "Here's a gift card for groceries to be delivered".
On a more personal note, my most recent ct scan this week showed no change. Everything is stable. Considering that my last scan showed my lymph nodes were as small as they can get and since they can't measure the diffuse cancer in the lining of my stomach, this really is the best news we could get. For now, treatment continues status quo.
Wednesday, April 23, 2014
Everybody Poops, Except Chemo Patients
This may be too much information. I never would have discussed my bathroom habits in a public setting before I had cancer. But all those tests and doctors appointments seem to have decreased my modesty.
Chemotherapy treatment comes with a lot of side effects. Before I began treatment, I didn't realize how many different kinds of drugs there were and the different side effects that came with them. When they told me I'd have sensitivity to cold in my hands, feet, and throat, I thought,"Sure, maybe wimpy old people get that, but not me". Sure enough, the morning after my first infusion, I woke up to a cold bedroom (we'd had the window open), I touched the metal bed frame, and it was painful!
Lately, the two side effects that have been bothering me the most are constipation and neuropathy. Of course this meant talking to my easy on the eyes, same age as me oncologist about pooping. He told me to take Senna and Colace every day for the constipation. This helps a little, but I'm still uncomfortable for several days after treatment and when things do start working, it's really painful. I sit on the toilet and want to scream, between the pain and burning sensation. Argh!
Then there's the neuropathy. It's been in my finger tips since my second infusion. Then last month, it appeared in my feet and spread through my whole hand. Great! Although it comes and goes, I now get to look forward to days when it hurts to walk or even just hold onto something. And the doctors' advice for this? Wiggle my toes! I found some exercises on line and am looking into acupuncture and special slippers and things, but geez Louise, wiggle my toes! That's the advice from my top-notch medical team?!
I know all of these things, including the blood clot in my leg, the pulmonary embolism in my lung, my first port that got infected, the high blood pressure, the nausea, the thinning hair, the perpetual runny nose, and the fatigue are all part of the package deal in fighting this terrible disease. But some days, I wish it was easier.
Related blog post from Dana Farber http://blog.dana-farber.org/insight/2014/05/is-chemo-working-if-i-dont-lose-my-hair/
Chemotherapy treatment comes with a lot of side effects. Before I began treatment, I didn't realize how many different kinds of drugs there were and the different side effects that came with them. When they told me I'd have sensitivity to cold in my hands, feet, and throat, I thought,"Sure, maybe wimpy old people get that, but not me". Sure enough, the morning after my first infusion, I woke up to a cold bedroom (we'd had the window open), I touched the metal bed frame, and it was painful!
Lately, the two side effects that have been bothering me the most are constipation and neuropathy. Of course this meant talking to my easy on the eyes, same age as me oncologist about pooping. He told me to take Senna and Colace every day for the constipation. This helps a little, but I'm still uncomfortable for several days after treatment and when things do start working, it's really painful. I sit on the toilet and want to scream, between the pain and burning sensation. Argh!
Then there's the neuropathy. It's been in my finger tips since my second infusion. Then last month, it appeared in my feet and spread through my whole hand. Great! Although it comes and goes, I now get to look forward to days when it hurts to walk or even just hold onto something. And the doctors' advice for this? Wiggle my toes! I found some exercises on line and am looking into acupuncture and special slippers and things, but geez Louise, wiggle my toes! That's the advice from my top-notch medical team?!
I know all of these things, including the blood clot in my leg, the pulmonary embolism in my lung, my first port that got infected, the high blood pressure, the nausea, the thinning hair, the perpetual runny nose, and the fatigue are all part of the package deal in fighting this terrible disease. But some days, I wish it was easier.
Related blog post from Dana Farber http://blog.dana-farber.org/insight/2014/05/is-chemo-working-if-i-dont-lose-my-hair/
Sunday, April 20, 2014
Stupid Things that Well Meaning People Say to you when you have Cancer
I have had lots of well meaning people say stupid things to me since my diagnosis. For the most part, it's not their fault. Unless you've had a late stage cancer yourself, you don't get it. Of course there also have been some comments that you would think common sense would prevent, but it doesn't.
1. You look great: Would you have told me I look great if I didn't have cancer? I'm not wearing any makeup, my hair hasn't been combed in two days, and I'm wearing my bathrobe. I look great? This goes in the same category as "You don't look like you have cancer". What is that supposed to look like? Tell me I look better than the last time you saw me, or you like my haircut, or I have more color in my cheeks than usual. But unless I look like I'm ready for a night out on the town, don't tell me I look great.
2. Think of how many lives you're saving: I tested positive for a gene mutation that increases your risk of stomach cancer to 80% (I'll blog more on that another time). This has necessitated several relatives being tested. It has also been very emotional for me. During one of these emotional times a relative said,"Think of how many lives you're saving". I wanted to yell, "Most likely at the expense of my own! Why didn't I get a chance for preventative surgery? It's not fair and that was a stupid thing to say!" This is somewhat of a unique situation, but I think that if you must say something, "I'm sorry you have cancer" is the only way to go.
3. You can beat this: Actually, barring a miracle, I probably can't. Beating this type of cancer at a late stage means living with it for five to ten years. That's beating it. "When this is all over" goes in the same category, because when this is all over, I'll probably be gone. When you say this, it only reminds me that I have a terminal illness, which is unhelpful since I've put a lot of work into changing my automatic thoughts from "I'm going to die" to "I have a chronic illness". Again, I'm sorry you have cancer is acceptable. Or ask about the progress of my treatment, for some this might be unhelpful, but I'm perfectly willing to talk about it.
4. Let me tell you about my ________ who died of cancer: Ok, so maybe you know or knew someone in my situation, but especially with a rare cancer, this is unlikely. Even if it was the same type of cancer, no two cases are exactly the same. If your loved one was treated ten years ago at some rinky-dink hospital, their treatment and prognosis is not going to be anything like mine, as I am receiving the most promising treatment out there at one of the top cancer institutes in the world. One of my colleagues told me about her friend and brother who both died of cancer. In detail. Then she said,"I'm certified in Reiki, so if you ever want me to bring in my table, I could do some Reiki for you after work." What? I'm not a Reiki Master, but I do know it's all about positive energy, and I'm not getting any from you.
5. Did you ever think this would happen to you: Sure. That's why it wasn't caught until stage IV. This is just stupid. Even though I've always been a bit of a hypochondriac, I didn't really think I'd have stage IV cancer. In this day and age, I thought all cancers got caught early. Again, just say,"I'm sorry you have cancer".
Ps. I'm not kidding, as I am typing this post, another relative passed on the message about my saving so many lives. Again, I appreciate the sentiment and they mean well, but I just want to scream, "Why didn't I get that chance!"
1. You look great: Would you have told me I look great if I didn't have cancer? I'm not wearing any makeup, my hair hasn't been combed in two days, and I'm wearing my bathrobe. I look great? This goes in the same category as "You don't look like you have cancer". What is that supposed to look like? Tell me I look better than the last time you saw me, or you like my haircut, or I have more color in my cheeks than usual. But unless I look like I'm ready for a night out on the town, don't tell me I look great.
2. Think of how many lives you're saving: I tested positive for a gene mutation that increases your risk of stomach cancer to 80% (I'll blog more on that another time). This has necessitated several relatives being tested. It has also been very emotional for me. During one of these emotional times a relative said,"Think of how many lives you're saving". I wanted to yell, "Most likely at the expense of my own! Why didn't I get a chance for preventative surgery? It's not fair and that was a stupid thing to say!" This is somewhat of a unique situation, but I think that if you must say something, "I'm sorry you have cancer" is the only way to go.
3. You can beat this: Actually, barring a miracle, I probably can't. Beating this type of cancer at a late stage means living with it for five to ten years. That's beating it. "When this is all over" goes in the same category, because when this is all over, I'll probably be gone. When you say this, it only reminds me that I have a terminal illness, which is unhelpful since I've put a lot of work into changing my automatic thoughts from "I'm going to die" to "I have a chronic illness". Again, I'm sorry you have cancer is acceptable. Or ask about the progress of my treatment, for some this might be unhelpful, but I'm perfectly willing to talk about it.
4. Let me tell you about my ________ who died of cancer: Ok, so maybe you know or knew someone in my situation, but especially with a rare cancer, this is unlikely. Even if it was the same type of cancer, no two cases are exactly the same. If your loved one was treated ten years ago at some rinky-dink hospital, their treatment and prognosis is not going to be anything like mine, as I am receiving the most promising treatment out there at one of the top cancer institutes in the world. One of my colleagues told me about her friend and brother who both died of cancer. In detail. Then she said,"I'm certified in Reiki, so if you ever want me to bring in my table, I could do some Reiki for you after work." What? I'm not a Reiki Master, but I do know it's all about positive energy, and I'm not getting any from you.
5. Did you ever think this would happen to you: Sure. That's why it wasn't caught until stage IV. This is just stupid. Even though I've always been a bit of a hypochondriac, I didn't really think I'd have stage IV cancer. In this day and age, I thought all cancers got caught early. Again, just say,"I'm sorry you have cancer".
Ps. I'm not kidding, as I am typing this post, another relative passed on the message about my saving so many lives. Again, I appreciate the sentiment and they mean well, but I just want to scream, "Why didn't I get that chance!"
Subscribe to:
Posts (Atom)