Today was my last day of external beam radiation treatment. Three long weeks of driving into the city and home again are over!
The clinic has a tradition for patients who finish their treatment. They have a little saying on a plaque that reflects on ending one stage and starting another, and there’s a bell attached to it. When you’re done with treatment, you read the saying and then ring the bell three times, while all the nurses, technicians, and doctors cheer for you.
Well, today was my day to ring the bell. I read the little saying, grateful that I was done, and I rang the bell three times...but on the third time, I rang it so hard I jerked the whole plaque and bell off the wall. No, I wasn’t excited in the least. I dare say, they’ll be remembering me around there for quite a while.
So, this chapter ends, and I get a few weeks break before entering the next one. In the meantime, I’ll be able to go with one of my sons to California to visit CalTech and Stanford, two of the schools he’s considering. I feel so blessed to feel well enough to do this with him.
Then, in another week or so, I’m going on an annual girlfriends’ weekend getaway. Three glorious nights with just the girls at a cabin in the mountains with views, wine, and a hot tub. Again, I’m feeling so blessed to be able to do this.
Then, the day after I get back from the mountains, I go into the hospital for three days for the Syed radiation procedures. Three days flat on my back, able to raise my head no more than 15 degrees. I’m not particularly looking forward to it, but it’s the next stage in this journey. I begrudgingly embrace the opportunity for more high tech healing. I will gladly accept visitors to help me pass the time...as well as any suggestions for things I can do to occupy myself as I stare at the ceiling of my hospital room. (I will have Netflix on my iPad.)
One day at a time...while still giggling about that broken bell.
Tuesday, September 25, 2018
Thursday, September 20, 2018
Like a bridge over troubled water
Paul and I have been married for 25 years, and even though we’ve been through some rough times, his love and support of me has never faltered. As I’ve negotiated my way through health and emotionally trying times, he’s always been my bridge over troubled water.
Through this cancer journey, I’ve thanked friends and family for all their support, which I dearly needed, but I don’t think I’ve ever singled out my husband for proper recognition. He’s left work to be with me during surgeries and treatments and doctor appointments, never once indicating his mind was anywhere but with me. He’s held my hand when I cried, held my body when I was weak. Understood when I was discouraged and anxious, and celebrated with me when I got good news.
This entry is merely to thank you, Paul. You’re my rock, my best friend, and no matter what life throws at us, together, we win. I’m the luckiest girl in the world.
Through this cancer journey, I’ve thanked friends and family for all their support, which I dearly needed, but I don’t think I’ve ever singled out my husband for proper recognition. He’s left work to be with me during surgeries and treatments and doctor appointments, never once indicating his mind was anywhere but with me. He’s held my hand when I cried, held my body when I was weak. Understood when I was discouraged and anxious, and celebrated with me when I got good news.
This entry is merely to thank you, Paul. You’re my rock, my best friend, and no matter what life throws at us, together, we win. I’m the luckiest girl in the world.
Monday, September 17, 2018
We’re going to annihilate this thing
“We’re going to annihilate this thing.”
No sweeter words could ever be heard from an oncologist, and that’s just what my doctor told me today. She also told me that my type of cancer, endometrial adenocarcinoma, historically responds very well to the type of radiation treatments I’m getting.
Just what this girl needed to hear.
Nine external treatments down. Six to go. Then, the Syed procedure in October.
Breathe, Beth. Breathe.
No sweeter words could ever be heard from an oncologist, and that’s just what my doctor told me today. She also told me that my type of cancer, endometrial adenocarcinoma, historically responds very well to the type of radiation treatments I’m getting.
Just what this girl needed to hear.
Nine external treatments down. Six to go. Then, the Syed procedure in October.
Breathe, Beth. Breathe.
Sunday, September 16, 2018
Under my skin
Well, it’s 3:00 a.m., the witching hour, and here I sit in my favorite recliner with my iPad in my lap. I’ve got eight out of 15 external beam radiation treatments under my belt, and my thoughts are racing. Is the tumor getting smaller? I’ve got to ask them on Monday if they can tell if the tumor is getting smaller. Surely it must be smaller. Why haven’t I asked them before now if the tumor has gotten smaller?
Just like before my original cancer presented, I felt nothing, No pain, no fatigue. Just living my life. We walk through our days, largely unaware of the chemical processes underway in our bodies. Most of them are causing good things to happen, life sustaining things to happen. We just walk around, doing our thing, while our body chemistry does its thing.
So, what in the world is going on when one little cell turns atypical, and the cell next to it does...and the cell next to it, and so on? Does some little key, like a needle in a haystack, find it’s perfect lock to turn to start the process?
I had no evidence of disease — that’s what the oncologists call it — for over five years, and then I began firing off those little atypical cells again. Remission is not really a word they use. They say no evidence of disease, implying “we can’t see it right now, but it could still be there, waiting to blow up and derail your life again.”
This is what I’m thinking about this morning at 3:00 a.m. Cancer has literally — and figuratively — gotten under my skin.
Just like before my original cancer presented, I felt nothing, No pain, no fatigue. Just living my life. We walk through our days, largely unaware of the chemical processes underway in our bodies. Most of them are causing good things to happen, life sustaining things to happen. We just walk around, doing our thing, while our body chemistry does its thing.
So, what in the world is going on when one little cell turns atypical, and the cell next to it does...and the cell next to it, and so on? Does some little key, like a needle in a haystack, find it’s perfect lock to turn to start the process?
I had no evidence of disease — that’s what the oncologists call it — for over five years, and then I began firing off those little atypical cells again. Remission is not really a word they use. They say no evidence of disease, implying “we can’t see it right now, but it could still be there, waiting to blow up and derail your life again.”
This is what I’m thinking about this morning at 3:00 a.m. Cancer has literally — and figuratively — gotten under my skin.
Monday, September 10, 2018
Being a part of something bigger than myself
I’ve been an at-home mom since before my twin boys were even conceived. I know that sounds odd, but bear with me. I had trouble becoming pregnant, and when the rigors of the traditional workforce combined with the hormonal roller coaster ride of infertility treatments and coincided with my husband getting a nice promotion and raise, I quit my job to focus on the task of becoming pregnant. It took several years, but it finally happened, and Allen and Boyce were born...coming up on 18 years ago.
When they were 20 months-old, two sentinel things happened: they started preschool and I found the MOMS Club, a support group for at-home mothers. The preschool was stellar, introducing them to the importance of community and making friends, while learning along the way. MOMS Club was a godsend for me. I met other young mothers who’d made the decision to stay at home to raise their children, and my boys made even more friends...some with whom they’re still friends today. More importantly, I found a fellowship of women that forever changed my life. Some of them, I’ve known for 16 years, and we still share our lives, even though we’ve spread across the country.
While living in France for three years for Paul’s work, I took French classes and joined an English-language group. Being a stranger in a strange land, I clung to these two groups for a sense of belonging.
Upon returning to the States, I jumped back into volunteering at the boys’ school and Boy Scouts....and then, BAM, cancer came along, and I was forced to back away from my volunteerism to focus my energies (or lack there of) on recovery from a dismal prognosis. But, I climbed out and slowly started getting involved again.
I guess you could say I’m a joiner. I like being around other people, working on projects together, feeling a part of the community. Earlier this year, ever aware that my boys would be flying the coop sooner than later, I decided it was time to get my feet wet again in the work-a-day world, and I turned back to something familiar, a place that had been so important to my children’s early education, their preschool. I applied to begin working as a substitute teacher...to give back to an organization that gave so much to my boys.
But, during the first week of school in August, I received my notice that cancer was making its way back into my life. I got to work for a grand total of four days before I had to take my name off the sub list so I would have time to make my way to radiation treatments and doctors’ appointments. I’m struggling to see the message in all of this. Perhaps there is no message. Perhaps the message is just to be still and take what comes as it comes. Perhaps there’s a new sense of community out there for me that has yet to present itself. Perhaps I’ll make my way back to the preschool when all this is over. I’d like to think so. What I do know is that cancer changes your perspective. More importantly, I know that being a part of something bigger than myself — bigger than cancer — is in my future.
When they were 20 months-old, two sentinel things happened: they started preschool and I found the MOMS Club, a support group for at-home mothers. The preschool was stellar, introducing them to the importance of community and making friends, while learning along the way. MOMS Club was a godsend for me. I met other young mothers who’d made the decision to stay at home to raise their children, and my boys made even more friends...some with whom they’re still friends today. More importantly, I found a fellowship of women that forever changed my life. Some of them, I’ve known for 16 years, and we still share our lives, even though we’ve spread across the country.
While living in France for three years for Paul’s work, I took French classes and joined an English-language group. Being a stranger in a strange land, I clung to these two groups for a sense of belonging.
Upon returning to the States, I jumped back into volunteering at the boys’ school and Boy Scouts....and then, BAM, cancer came along, and I was forced to back away from my volunteerism to focus my energies (or lack there of) on recovery from a dismal prognosis. But, I climbed out and slowly started getting involved again.
I guess you could say I’m a joiner. I like being around other people, working on projects together, feeling a part of the community. Earlier this year, ever aware that my boys would be flying the coop sooner than later, I decided it was time to get my feet wet again in the work-a-day world, and I turned back to something familiar, a place that had been so important to my children’s early education, their preschool. I applied to begin working as a substitute teacher...to give back to an organization that gave so much to my boys.
But, during the first week of school in August, I received my notice that cancer was making its way back into my life. I got to work for a grand total of four days before I had to take my name off the sub list so I would have time to make my way to radiation treatments and doctors’ appointments. I’m struggling to see the message in all of this. Perhaps there is no message. Perhaps the message is just to be still and take what comes as it comes. Perhaps there’s a new sense of community out there for me that has yet to present itself. Perhaps I’ll make my way back to the preschool when all this is over. I’d like to think so. What I do know is that cancer changes your perspective. More importantly, I know that being a part of something bigger than myself — bigger than cancer — is in my future.
Saturday, September 8, 2018
Filling in some blanks
I realized I haven’t really explained what radiation treatment is like, so I’ll spend a little time writing about that. There are different kinds of radiation treatment. What I’m doing right now is called external beam radiation. While I lie still on the treatment table, with the mattress form holding me in place, a machine rotates around me several times, delivering the radiation to the mapped location of my tumor. I feel absolutely nothing from the radiation beams. It takes about seven minutes, less time than it takes for me to change into my gown and get positioned on the treatment table. At this point, the most difficult thing about these treatments is driving from the suburbs into the city and home again.
There can be skin irritation at the site of treatment, and my radiation oncologist told me this is likely the only side effect I’ll feel. Some people have fatigue from radiation, but mine is focused on a relatively small area, that I’m probably not going to feel much fatigue from the treatment.
What does fatigue me are the sleep problems I’ve developed. Three o’clock am seems to be my witching hour. I wake up, unable to go back to sleep, so I go downstairs and read a little or play a game or two on my computer. Sometimes, I go back and read your comments to my blog entries, because they’re a source of comfort. While my resolve remains strong, all the what-if’s seem to come to light at 3:00 am.
As I mentioned in the last entry, I’m going to be doing fifteen of these external beam radiation treatments instead of the originally planned ten, because once my radiation oncologist reviewed my old radiation treatment records, she determined that my current tumor is outside the treatment field from the previous radiation. There are limits to how much radiation a person can have in their lifetime, and if I had had previous radiation to my current treatment area, I wouldn’t be able to have more than ten treatments. So, being able to have fifteen treatments is a very good thing.
Another very good thing is that I am able to have the Syed procedure done. I don’t have all the details on this yet, even after Googling everything I can find on the internet, but, basically, it is another kind of radiation delivery system, named after a Dr. Syed. It requires that I be in the hospital for three days, over which time I’ll receive five treatments of high dose radiation delivered through needles directly to the tumor. I have to be in the hospital for this, as the template and needles must be put into place while I’m under general anesthesia — and between treatments, I must lie flat on my back for three days (lifting my head no more than 20%, I’ve read) so that I don’t accidentally shift the needles from the treatment area. I’m wondering if I’ll be able to use my iPad for blogging and general entertainment during this time. I’d be lost without it. I might have to set up a friends and family visitation schedule to keep me occupied. ;-) I’m tentatively scheduled to go in for this treatment October 22nd through 24th.
A not-so-good thing that I discovered after talking with my radiation oncologist on Thursday is that the tumor is bigger than originally thought. Apparently, my gynecological oncologist took a biopsy from the tip of the iceberg. Instead of being what we thought was a pea-sized tumor, it’s more the size of a prune. It’s still localized and highly treatable. I just can’t believe I didn’t realize it was there before the bleeding started.
That’s about all to report for now, except that my treatment time changed from 2:00 pm to 11:20 am, making for a much nicer commute into and out of the city.
Thanks again, for all the support. It means the world to me.
There can be skin irritation at the site of treatment, and my radiation oncologist told me this is likely the only side effect I’ll feel. Some people have fatigue from radiation, but mine is focused on a relatively small area, that I’m probably not going to feel much fatigue from the treatment.
What does fatigue me are the sleep problems I’ve developed. Three o’clock am seems to be my witching hour. I wake up, unable to go back to sleep, so I go downstairs and read a little or play a game or two on my computer. Sometimes, I go back and read your comments to my blog entries, because they’re a source of comfort. While my resolve remains strong, all the what-if’s seem to come to light at 3:00 am.
As I mentioned in the last entry, I’m going to be doing fifteen of these external beam radiation treatments instead of the originally planned ten, because once my radiation oncologist reviewed my old radiation treatment records, she determined that my current tumor is outside the treatment field from the previous radiation. There are limits to how much radiation a person can have in their lifetime, and if I had had previous radiation to my current treatment area, I wouldn’t be able to have more than ten treatments. So, being able to have fifteen treatments is a very good thing.
Another very good thing is that I am able to have the Syed procedure done. I don’t have all the details on this yet, even after Googling everything I can find on the internet, but, basically, it is another kind of radiation delivery system, named after a Dr. Syed. It requires that I be in the hospital for three days, over which time I’ll receive five treatments of high dose radiation delivered through needles directly to the tumor. I have to be in the hospital for this, as the template and needles must be put into place while I’m under general anesthesia — and between treatments, I must lie flat on my back for three days (lifting my head no more than 20%, I’ve read) so that I don’t accidentally shift the needles from the treatment area. I’m wondering if I’ll be able to use my iPad for blogging and general entertainment during this time. I’d be lost without it. I might have to set up a friends and family visitation schedule to keep me occupied. ;-) I’m tentatively scheduled to go in for this treatment October 22nd through 24th.
A not-so-good thing that I discovered after talking with my radiation oncologist on Thursday is that the tumor is bigger than originally thought. Apparently, my gynecological oncologist took a biopsy from the tip of the iceberg. Instead of being what we thought was a pea-sized tumor, it’s more the size of a prune. It’s still localized and highly treatable. I just can’t believe I didn’t realize it was there before the bleeding started.
That’s about all to report for now, except that my treatment time changed from 2:00 pm to 11:20 am, making for a much nicer commute into and out of the city.
Thanks again, for all the support. It means the world to me.
Thursday, September 6, 2018
Today, I’m just a person
Today, I’m just a person who took her son to get his braces off.
Today, I’m just a person who needed a car window fixed.
Today, I’m just a person who sought out a friend for a few quick laughs.
Today, I’m just a person who went shopping for a shirt for her son to wear in his senior pictures.
Today, I’m just a person who drove into the city, while listening to The Curious Incident of the Dog in the Night-Time.
Today, I’m just a person who had another round of about 10 minutes of external beam radiation.
Today, I’m just a person who found out I’ve been scheduled for 15 external beam radiation treatments instead of 10. This is a good thing. It means my body is strong enough to have the extra exposure.
Today, I’m just a person who will have the Syed radiation procedures October 22–24th.
Today, I’m just a person who’s too tired to explain the Syed radiation procedure right now.
Today, I’m just a person who enjoyed dinner tonight (and last night!) from good friends.
Today, I’m just a person who’s ready for bed a little early.
Today, I’m just a person.
Today, I’m just a person who needed a car window fixed.
Today, I’m just a person who sought out a friend for a few quick laughs.
Today, I’m just a person who went shopping for a shirt for her son to wear in his senior pictures.
Today, I’m just a person who drove into the city, while listening to The Curious Incident of the Dog in the Night-Time.
Today, I’m just a person who had another round of about 10 minutes of external beam radiation.
Today, I’m just a person who found out I’ve been scheduled for 15 external beam radiation treatments instead of 10. This is a good thing. It means my body is strong enough to have the extra exposure.
Today, I’m just a person who will have the Syed radiation procedures October 22–24th.
Today, I’m just a person who’s too tired to explain the Syed radiation procedure right now.
Today, I’m just a person who enjoyed dinner tonight (and last night!) from good friends.
Today, I’m just a person who’s ready for bed a little early.
Today, I’m just a person.
Tuesday, September 4, 2018
Be still
Tomorrow afternoon at 2:00 p.m., I begin my radiation treatment, and it won’t come soon enough. I am feeling very impatient. I’m ready to get this thing done!
While I was at my appointment with the radiation oncologist last week, her staff was able to do my simulation CT to prepare me for treatment. I was placed on a table with something like a blow-up mattress underneath me. They filled up the mattress, and it inflated around me, holding me in a fixed position so the technician could get accurate pictures of exactly where my tumor is so that the radiation will be guided to the perfect spot for all ten treatments. I could wiggle, if I wanted to...but only just a little. However, I held absolutely still, probably holding my breath even though I didn’t need to.
After the imaging and before deflating the mattress and releasing me from my fixed spot, the technician marked four plus signs on my lower abdomen, aids to place me into the exact same position when I actually receive treatment. In years past, they would ink permanent tattoos to mark those spots. I’m glad a Sharpie and some surgical tape do the trick now.
Today my thoughts are racing: my health, my husband, my boys, my outcome. But I have to just pause and tell myself, “be still”. The time will come. Ten days of treatment will pass very quickly, and then I’ll do whatever the next stage will be. Just be still.
While I was at my appointment with the radiation oncologist last week, her staff was able to do my simulation CT to prepare me for treatment. I was placed on a table with something like a blow-up mattress underneath me. They filled up the mattress, and it inflated around me, holding me in a fixed position so the technician could get accurate pictures of exactly where my tumor is so that the radiation will be guided to the perfect spot for all ten treatments. I could wiggle, if I wanted to...but only just a little. However, I held absolutely still, probably holding my breath even though I didn’t need to.
After the imaging and before deflating the mattress and releasing me from my fixed spot, the technician marked four plus signs on my lower abdomen, aids to place me into the exact same position when I actually receive treatment. In years past, they would ink permanent tattoos to mark those spots. I’m glad a Sharpie and some surgical tape do the trick now.
Today my thoughts are racing: my health, my husband, my boys, my outcome. But I have to just pause and tell myself, “be still”. The time will come. Ten days of treatment will pass very quickly, and then I’ll do whatever the next stage will be. Just be still.
Saturday, September 1, 2018
Don’t take no for an answer
First of all, I want to thank all of you who have reached out to me since by last entry. I don’t blog to get feedback. I blog to find release. But, it’s a wonderful fringe benefit to hear from everyone.
Some of you have asked about the specific dates of my upcoming treatment, and I want to answer that question. I start radiation on Wednesday, September 5th and finish up on Tuesday, September 18th. My radiation oncologist wants to review my treatment records from six years ago when I had a broader spectrum pelvic radiation, just after I was diagnosed the first time. If she sees that the current tumor is located outside the field of the first bout of radiation, then she’ll consider the one-time ratiation treatment that must be done in an operating room. I don’t know the time table for that. Additionally, I mentioned starting Tamoxifen. That won’t happen until, at least, the next appointment I have with my gynecological oncologist in a few weeks, and I don’t know how long I might be on it. Most people have heard of Tamoxifen in relation to breast cancer, but it can be used in GYN cancers too, if, like mine, they are hormone-receptor positive.
I also wanted to mention that I knew something was wrong at least six weeks ago when I started having unexplained vaginal bleeding. Since I’m post-menopausal and have no uterus or ovaries anymore, I knew this was not normal. After a week or so of this bleeding, I knew I needed to call my gynecological oncologist to get it check out. And, this is the important part, so sit up and take notice: I was told by the scheduler that I couldn’t see my doctor until six weeks later. I even explained that I was a stage IV endometrial cancer survivor with vaginal bleeding, but she told me, with a very snippy attitude, that I would just have to wait!
No, no, I thought. That just won’t do. So, I called back and asked to speak to the doctor’s medical assistant. I had to leave a message, but she called me back within the hour, set me up for a PET scan in two days, and I was in the doctor’s office within a week after the PET. That’s when she found the tumor and took a biopsy. It took a week to get the results back, but she called me herself to give me the news. In two days, I was in the radiation oncologist’s office making a treatment plan; that was two days ago. And, now I’m scheduled to begin radiation treatment on Wednesday. All this before I would have gotten in to see the gynecological oncologist the if I’d taken NO for an answer from her scheduler.
The message I want to leave with all of you is take charge of your health care. Don’t let a bureaucratic policy dictate how you’re cared for. Insist on what you need, no matter what. Don’t let your questions go unanswered. And, for goodness sake, do your own research, educate yourself, and keep records of every test, treatment, and office note.
I don’t wish my situation on anybody, but if you find yourself in anything like my shoes, dictate the care you deserve, because you deserve it. Doing so might just save your life.
Some of you have asked about the specific dates of my upcoming treatment, and I want to answer that question. I start radiation on Wednesday, September 5th and finish up on Tuesday, September 18th. My radiation oncologist wants to review my treatment records from six years ago when I had a broader spectrum pelvic radiation, just after I was diagnosed the first time. If she sees that the current tumor is located outside the field of the first bout of radiation, then she’ll consider the one-time ratiation treatment that must be done in an operating room. I don’t know the time table for that. Additionally, I mentioned starting Tamoxifen. That won’t happen until, at least, the next appointment I have with my gynecological oncologist in a few weeks, and I don’t know how long I might be on it. Most people have heard of Tamoxifen in relation to breast cancer, but it can be used in GYN cancers too, if, like mine, they are hormone-receptor positive.
I also wanted to mention that I knew something was wrong at least six weeks ago when I started having unexplained vaginal bleeding. Since I’m post-menopausal and have no uterus or ovaries anymore, I knew this was not normal. After a week or so of this bleeding, I knew I needed to call my gynecological oncologist to get it check out. And, this is the important part, so sit up and take notice: I was told by the scheduler that I couldn’t see my doctor until six weeks later. I even explained that I was a stage IV endometrial cancer survivor with vaginal bleeding, but she told me, with a very snippy attitude, that I would just have to wait!
No, no, I thought. That just won’t do. So, I called back and asked to speak to the doctor’s medical assistant. I had to leave a message, but she called me back within the hour, set me up for a PET scan in two days, and I was in the doctor’s office within a week after the PET. That’s when she found the tumor and took a biopsy. It took a week to get the results back, but she called me herself to give me the news. In two days, I was in the radiation oncologist’s office making a treatment plan; that was two days ago. And, now I’m scheduled to begin radiation treatment on Wednesday. All this before I would have gotten in to see the gynecological oncologist the if I’d taken NO for an answer from her scheduler.
The message I want to leave with all of you is take charge of your health care. Don’t let a bureaucratic policy dictate how you’re cared for. Insist on what you need, no matter what. Don’t let your questions go unanswered. And, for goodness sake, do your own research, educate yourself, and keep records of every test, treatment, and office note.
I don’t wish my situation on anybody, but if you find yourself in anything like my shoes, dictate the care you deserve, because you deserve it. Doing so might just save your life.
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