I felt like blogging tonight because I have a trip tomorrow--I'm going to the Calgary Comic Expo. We'll be waking up early tomorrow and as I prepared for bed, I thought about taking an herbal sleep supplement to make sure I get a good rest. I haven't taken sleep aids in a while. As I went to get the bottle, I remembered how last February we took a different trip, to Mexico. Puerto Vallarta. I brought Buscopan, Advil, and Nytol with me. At night I slept propped up on pillows and needed the Nytol to (hopefully) sleep through the back pain that would come intermittently. The last night of our trip I skipped dinner with friends because my endomees were acting up.
I don't know how long this phase will last, but I'm so grateful. So glad I can be going to bed with nothing but a little valerian to help me sleep through a fuzzy cat butt on my face. Glad I'll be leaving in the morning with nothing stronger in my medicine bag than Claritin in case my allergies act up. The freedom of not worrying where I'll stop to use the bathroom along the 4 hour drive is immeasurable. I wanted to jot down the happiness of these small moments as they come.
April 26, 2013
March 7, 2013
The News Is In, and It's Good!
Apologies for not getting this up much earlier. The new semester has been unkind to me in its emotional and mental toll. Also I wanted to talk to close friends and family before posting about my test results.
I'll get right to the good stuff. At my doctor's appointment last month we compared my latest ultrasound to the one taken in June, 2012. My June ultrasound showed a large mass (3.5 cm) on my right side (it's been there for a long time, but is not painful). On my left, where my remaining ovary is, the technician reported a "complex mass" of "numerous" cysts. Yeah, couldn't even get an exact count. The largest cyst in this mass was 3.8 cm, which is pretty enormous.
My ultrasound taken last month showed that the right-side mass is completely unchanged. On my left side, however, I only have two (TWO!) cysts, and the largest is 1.2 cm.
I'm so utterly relieved. I almost can't even explain why I'm so relieved, except to say that the worst result for me wouldn't be "no change." I was afraid of hearing there had been "some reduction" or a "slight change"--something miniscule and ephemeral, something that left me in limbo. Had it been the treatment, or something else? Was it worth doing over again? What other options were there?
Instead I got definitive, and that's a great feeling. Does this mean I'll be pain free forever? Well, no. The link between growths and pain is tenuous at best. And it's possible my endomees will grow right back. I'm hopeful, though, that this treatment has bought me some pain-free time. I've been off the Lupron since January and I'm still feeling good.
The biggest side effects have been the weight gain (I just started a new exercise program--go me!) and knee pain, but those are minor given how good I feel.
The next step is following up with my surgeon and then back to the ol' "monitor and adapt."
Still. Hope.
I'll get right to the good stuff. At my doctor's appointment last month we compared my latest ultrasound to the one taken in June, 2012. My June ultrasound showed a large mass (3.5 cm) on my right side (it's been there for a long time, but is not painful). On my left, where my remaining ovary is, the technician reported a "complex mass" of "numerous" cysts. Yeah, couldn't even get an exact count. The largest cyst in this mass was 3.8 cm, which is pretty enormous.
My ultrasound taken last month showed that the right-side mass is completely unchanged. On my left side, however, I only have two (TWO!) cysts, and the largest is 1.2 cm.
I'm so utterly relieved. I almost can't even explain why I'm so relieved, except to say that the worst result for me wouldn't be "no change." I was afraid of hearing there had been "some reduction" or a "slight change"--something miniscule and ephemeral, something that left me in limbo. Had it been the treatment, or something else? Was it worth doing over again? What other options were there?
Instead I got definitive, and that's a great feeling. Does this mean I'll be pain free forever? Well, no. The link between growths and pain is tenuous at best. And it's possible my endomees will grow right back. I'm hopeful, though, that this treatment has bought me some pain-free time. I've been off the Lupron since January and I'm still feeling good.
The biggest side effects have been the weight gain (I just started a new exercise program--go me!) and knee pain, but those are minor given how good I feel.
The next step is following up with my surgeon and then back to the ol' "monitor and adapt."
Still. Hope.
January 29, 2013
Waiting for News
I haven't blogged much over the last four months, mainly because I've felt so good. My buttjections, as J calls them, have helped me tremendously. The side effects were unpleasant, but not intolerable, and the benefits far outweighed the costs.
Now, though, my treatment course is over. Last Thursday I went in for a follow up ultrasound. I was nervous, but I knew they wouldn't tell me anything at the imaging centre (I peeked at the machine when the technician was out of the room, but all I cold see was grey blobby static. I guess that's why you need training). I have an appointment next week with my doctor to go over the results.
Today I got a call from the doctor's office to tell me the images were in. "Dr. G asked me to tell you that the cyst on your right is the same size, and the ones on the left have shrunk," the receptionist said. "Oh, good," I remember replying. But inside, all I could think was, "What does that mean???"
The cyst on my right is the big one. I'm glad there has been some reduction on the left, but I realize now that I was subconsciously expecting this to be a miracle cure. That I'd go into the office and my doctor would say, "Good news! All the endomees are gone and you'll be pain free forever!" I'm trying not to panic but I can't help feeling anxious. What if the reduction is negligible? What if I go right back to the way I was?
I'll know more on Wednesday and will blog then. Until then I'll just keep my fingers crossed and keep taking my indole-3-carbinol.
Now, though, my treatment course is over. Last Thursday I went in for a follow up ultrasound. I was nervous, but I knew they wouldn't tell me anything at the imaging centre (I peeked at the machine when the technician was out of the room, but all I cold see was grey blobby static. I guess that's why you need training). I have an appointment next week with my doctor to go over the results.
Today I got a call from the doctor's office to tell me the images were in. "Dr. G asked me to tell you that the cyst on your right is the same size, and the ones on the left have shrunk," the receptionist said. "Oh, good," I remember replying. But inside, all I could think was, "What does that mean???"
The cyst on my right is the big one. I'm glad there has been some reduction on the left, but I realize now that I was subconsciously expecting this to be a miracle cure. That I'd go into the office and my doctor would say, "Good news! All the endomees are gone and you'll be pain free forever!" I'm trying not to panic but I can't help feeling anxious. What if the reduction is negligible? What if I go right back to the way I was?
I'll know more on Wednesday and will blog then. Until then I'll just keep my fingers crossed and keep taking my indole-3-carbinol.
October 10, 2012
185
The last few months have been incredible in their lack of physical pain. It's like magic. No cramps, no 'tummy troubles,' nothing. I feel so good it's almost scary. Looking back, I wonder how I ever put up with so much pain for so long.
My hot flashes have subsided. I still get one now and then, but I've stopped having them relentlessly throughout the day. I can sleep through the night most nights. The emotional fluctuations are still present, but I'm doing my best to manage them.
The weight gain is a huge problem. Pun intended.
When I started the BatShots, I weighed about 173. That was already too high for me; I wanted to lose at least ten pounds from that point. I knew that weight gain was a potential side effect of the BatShots, but I hoped fervently that it would pass me by.
Over the last few weeks, my clothes have gotten tighter. My face is getting rounder. I hate it. I bought two new T-shirts that don't fit and I refuse to send them back because I should fit into a Large. This is my rationale. Or should I say my irrationale.
This morning I stepped onto the scale, reluctantly, half-squinting. I now weigh 185.
I haven't drastically changed my eating habits. I walk to school most days. This summer has been emotionally draining, and school is making me stressed, but surely not 12 pounds of stress.
Food is just so goddamned delicious. I'm working ridiculous hours every day trying to meet my various obligations and I hate the thought of committing even more time to working out. But I can't stay at this weight. I'm full of so much self-loathing and I know it's not healthy.
I must have some energy in the reserves. Time to call it in.
My hot flashes have subsided. I still get one now and then, but I've stopped having them relentlessly throughout the day. I can sleep through the night most nights. The emotional fluctuations are still present, but I'm doing my best to manage them.
The weight gain is a huge problem. Pun intended.
When I started the BatShots, I weighed about 173. That was already too high for me; I wanted to lose at least ten pounds from that point. I knew that weight gain was a potential side effect of the BatShots, but I hoped fervently that it would pass me by.
Over the last few weeks, my clothes have gotten tighter. My face is getting rounder. I hate it. I bought two new T-shirts that don't fit and I refuse to send them back because I should fit into a Large. This is my rationale. Or should I say my irrationale.
This morning I stepped onto the scale, reluctantly, half-squinting. I now weigh 185.
I haven't drastically changed my eating habits. I walk to school most days. This summer has been emotionally draining, and school is making me stressed, but surely not 12 pounds of stress.
Food is just so goddamned delicious. I'm working ridiculous hours every day trying to meet my various obligations and I hate the thought of committing even more time to working out. But I can't stay at this weight. I'm full of so much self-loathing and I know it's not healthy.
I must have some energy in the reserves. Time to call it in.
September 18, 2012
Good News, Everyone! [Sept 2012 Edition]
I don't feel up to detailing more of my treatment side effects here--some days I like to vent, other days it makes me feel self-aggrandizing and whiny. There have been a few developments in endomees in the news recently and I decided to link them here as they appear.
First of all, a long-term study was just evaluated for the use of plasma (read: LASERS!) in treating endomees. The study focused on the participants' fertility, which isn't really my bag, baby, but the results seem encouraging. According to the article,
The "PlasmaJet®" symbol and company information features prominently in the article, so I don't know if they paid for the study or what. But the data seems to offer hope to women with endomees, especially ones trying to conceive.
Reading this article reminded me of the comments of Libby Bruce at the Democratic National Convention this month. She discussed her struggles with endomees--a familiar story to sufferers. Unexplained abdominal pain, doctors telling her it was normal/expected/all in her head, desperation and fear. A nurse at Planned Parenthood finally diagnosed her, helped her get treatment, and Bruce eventually conceived and gave birth to her daughter, Ruby. Once again, of course, endomees is conflated with infertility. It's not that I mind treatments focusing on fertility. It makes me feel pushed a bit to the back, that's all.
At the end of last month, GUT journal released a report that suggested women with endomees have a higher incidence of Inflammatory Bowel Disease (IBD). Now this is a study I can relate to. This is a heavy journal article filled with a lot of information I didn't understand (the article itself requires a subscription, but the abstract was weighty enough), but the authors' summary is pretty straightforward:
First of all, a long-term study was just evaluated for the use of plasma (read: LASERS!) in treating endomees. The study focused on the participants' fertility, which isn't really my bag, baby, but the results seem encouraging. According to the article,
"[t]he study...included 55 patients who had unilateral or bilateral ovarian endometriomas removed by PlasmaJet® ablation. After a mean follow-up of 20 months (range 12-39 months), 67 percent of women who wished to become pregnant had conceived, 59 percent of them spontaneously."
The "PlasmaJet®" symbol and company information features prominently in the article, so I don't know if they paid for the study or what. But the data seems to offer hope to women with endomees, especially ones trying to conceive.
Reading this article reminded me of the comments of Libby Bruce at the Democratic National Convention this month. She discussed her struggles with endomees--a familiar story to sufferers. Unexplained abdominal pain, doctors telling her it was normal/expected/all in her head, desperation and fear. A nurse at Planned Parenthood finally diagnosed her, helped her get treatment, and Bruce eventually conceived and gave birth to her daughter, Ruby. Once again, of course, endomees is conflated with infertility. It's not that I mind treatments focusing on fertility. It makes me feel pushed a bit to the back, that's all.
At the end of last month, GUT journal released a report that suggested women with endomees have a higher incidence of Inflammatory Bowel Disease (IBD). Now this is a study I can relate to. This is a heavy journal article filled with a lot of information I didn't understand (the article itself requires a subscription, but the abstract was weighty enough), but the authors' summary is pretty straightforward:
"The risk of IBD in women with endometriosis was increased even in the long term, hence suggesting a genuine association between the diseases, which may either reflect common immunological features or an impact of endometriosis treatment with oral contraceptives on risk of IBD."My own experiences certainly back up this conclusion. Hopefully the study leads to more investigation into, and maybe treatment for, endomees-related IBD symptoms.
September 2, 2012
Heat Wave!
So the hot flashes are in full force. At first I wasn't sure I was even having them. It's the middle of summer after all. Being hot is my default state.
Gradually I began to notice the difference between being outside-hot and inside-hot. When I'm hot because of the weather, my skin gets warm. When a hot flash hits, it's like a furnace clicks on in the center of my chest. Heat spreads out from my core and radiates off my skin. I feel like I could power a small town with the energy blasting from my body.
The flashes don't last too long, and at first they were kind of cool (no pun intended). Normal normal normal I'M A MINI SUN! normal normal normal. Now, though, they're happening ALL THE TIME.
I estimate I have about one an hour when I'm awake. Hot/spicy food or exercise seem to trigger flashes. Last night I woke up three times gasping for air and scrambling to turn on the fan.
The novelty has definitely worn off.
However, the hot flashes are infinitely preferable to the endomees. I feel physically excellent, and going supernova regularly seems a fair exchange.
Gradually I began to notice the difference between being outside-hot and inside-hot. When I'm hot because of the weather, my skin gets warm. When a hot flash hits, it's like a furnace clicks on in the center of my chest. Heat spreads out from my core and radiates off my skin. I feel like I could power a small town with the energy blasting from my body.
The flashes don't last too long, and at first they were kind of cool (no pun intended). Normal normal normal I'M A MINI SUN! normal normal normal. Now, though, they're happening ALL THE TIME.
I estimate I have about one an hour when I'm awake. Hot/spicy food or exercise seem to trigger flashes. Last night I woke up three times gasping for air and scrambling to turn on the fan.
The novelty has definitely worn off.
However, the hot flashes are infinitely preferable to the endomees. I feel physically excellent, and going supernova regularly seems a fair exchange.
August 13, 2012
Reading Resources
Last year I decided I would never be able to manage my endomees without educating myself. I've always been a focused learner, soaking up all the knowledge I can from all the books I can get my hands on. Unfortunately, books on endomees tend to be pretty dry. Still, I was able to get some good information from the following.
I'm a bit of a hippie (but not super hippie--sort of a moderate hippie) and I wanted a nutritional/naturopathic guide to endo as well as one centered in western medicine. I liked this book because of the personal stories scattered throughout as well as the nutritional plan (yeast free, alcohol free, caffeine free--not that I did that, but I liked that it was there) and supplement suggestions.
Some chapters of the book are more heavily technical, while others are more conversational in tone. Two chapters focus on fertility. Meal plans and blank record charts (to track periods, medication, and symptoms) are included in the appendices. Altogether I found it readable and informative.
"Endometriosis is a jigsaw puzzle of symptoms. You need to fit all the pieces together to provide clues as to what is happening within your body. This book will try to give you some of the pieces of the jigsaw, but you have to put them together yourself," (p 1).
To complement the nutritional book, I wanted a medical textbook to read. I got one in this hefty tome. The book was published in 2009, so the "current management" it refers to is probably 2005 and earlier. Still, it has a lot of detailed medical information on how endo starts (as best we know), how it develops, and what treatments exist.
What struck me about this book is the compassion the authors have for women who suffer for the condition. While the material is complex and dry, the writers strive to make the information personal and caring. It's not what I expected.
The book has lots of color pictures--squeamish, take note--and lists of academic references. Information is divided into eight sections: epidemiology, pathogenesis, diagnostic dilemmas, clinical relevance and treatment options, surgical treatment, classical medical treatments, new medical treatments, and future trends.
"From a woman's perspective...endometriosis is a disease of many illnesses which is surrounded by taboos, myths, delayed diagnosis, hit-and-miss treatments, and a lack of awareness, overlaid on a wide variety of symptoms that embody a stubborn, frustrating and, for some, chronic condition. These women are given a life sentence and are trapped by endometriosis," (p 3).
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