It's been quite a while since I updated this blog. I've been pretty busy trying to keep up my normal routine while dealing with the side effects of treatment. A lot has happened since I last wrote. For an update on my treatment, which involves an immunotherapy trial, see the January 2015 update on the About My Diagnosis page.
According to Stupid Cancer, 72,000 young adults are diagnosed with cancer each year. Now I am not very good at math, nor do I claim to know anywhere near 72,000 people, but within my circle of friends, it seems like the real number of young adults with cancer is even higher. Including myself, there are four of us who have known each other since we were teenagers, who have or had cancer.
Three years ago, one of my friends was diagnosed with stage III HER2+ Inflammatory Breast Cancer. A vibrant, busy, mother of two, and successful professional, it was a shock to all of us. Our community of friends rallied behind her and her family. She underwent surgery, radiation, and chemotherapy. After two years of maintaining a status of No Evidence of Disease, thanks in large part to infusions of Herceptin every three weeks, her cancer metastasized to her brain. She underwent whole brain radiation with good results and continues to treat her now stage IV cancer with Herceptin infusions.
A little less than two years ago, one of my very close friends, at age 38 was diagnosed with stage I uterine cancer. We were shocked that two people in our group of friends could have cancer. Who gets cancer in their thirties? She had a total hysterectomy, including thirty lymph nodes, and now regards herself as having 'had" cancer, even though she's still a little short of that magic two years without cancer mark. Of course, having a total hysterectomy in your thirties creates all sorts of other problems that young adults should not have to deal with, putting your body into complete menopause overnight. Her cancer also tested positive for Lynch Syndrome, although her blood work does not and she does not have the family history of cancer that comes with Lynch. The geneticists don't quite know what to make of her, but she now has to undergo the lengthy panel of annual tests that go with Lynch. She also mystifies doctors, being young and not overweight, and very active, it makes no sense that she developed uterine cancer. About two months after her hysterectomy, we had a party with a uterus shaped pinata that I made, so we could beat the crap out of cancer.
Less than six months after that, I was diagnosed with stage IV stomach cancer at the age of 35. You can read all about my diagnosis and treatment elsewhere on this site. I've posted before about the "how's and why's" of my cancer. It is all due to genetics in my case, a genetic mutation that gave me an 80% chance of developing stomach cancer, most likely at a young age. To say that our community of friends was rocked by a third cancer diagnosis of a friend in her thirties is an understatement.
Then, this week, another friend, from this same group of people, had his left testicle removed due to what is most likely (90%) testicular cancer. Now he is 40, so in the cancer world he is technically not a young adult, but this is still shocking and it brought me to really question what percentage of young adults has cancer. How many of us are there?
As I stated above, I'm not very good at math and I loathe statistics. And I feel like this is the point where I would normally begin to sum up my thoughts with some sort of conclusion that would make sense of all this. But I have no conclusion. And this doesn't make sense.
Stupid Cancer.
Wednesday, January 14, 2015
Thursday, September 11, 2014
Long time, no blog.
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!
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, 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!
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