It's all relative. All of it. I jammed my toe on the bedpost tonight, which for a second was the worst pain of the day but then subsided faster than the rest of my bodily discomforts. But if you tell someone that jamming your toe is more painful than, say, having contrast dye injected into your bloodstream while laying face-down on a hard plastic plank, they are not likely to believe you. People also have trouble believing that you are going to report to your job for a few hours between your breast MRI and ultrasound appointments. Might seem ridiculous to the layperson, but hey, when you've had cancer this is just the way it goes.
Let me explain.
For the past week or so I have noticed a tingling firmness in my right breast. It's more lump-like than the inflammatory breast cancer ever was, but it's not distinctly lumpy like a pea or other round object. My quarterly appointment with Dr. Oncologist is scheduled for tomorrow morning, so I thought I'd be proactive and report this new development to her via electronic correspondence (MyChart is awesome for those of us with health issues!). I figured she could either wait to check out my lump on Friday, or order some exploratory tests prior to our meeting. No harm either way. In true Dr. O fashion, she took my words at face-value and ordered some tests.
This by itself was refreshing, because I sometimes wonder how well I walk the line between being a hypochondriac and too complacent. As a cancer survivor who is still in the high-risk-of-recurrence zone, I worry that I could be overly sensitive to every little bodily change. I don't want to turn into the girl-who-cried-wolf when it comes to a potential recurrence. On the other hand, I want to be diligent and not miss something if it does pop up. No one knows my body better than I do, so if something truly alarming happens I want to sound the alarm. Instantly.
At any rate, Tuesday evening, I sounded the alarm. Dr. O had a sample of my blood before noon on Wednesday, and she had me scheduled for a mammogram and breast MRI scan on Thursday morning. At the mammogram appointment the radiologist briefly viewed my pictures and requested an ultrasound of the breast, too. That appointment was made for Thursday afternoon.
You see, it all sounds awful when it's typed up like this, but I promise you it was no big deal. These are just the things you have to do when you've had cancer before. I wasn't even stressed about it. I'm still not stressed about it. I'm a bit sore and stiff from spending 3 hours being smashed (mammo) or contorted (MRI) or both (ultrasound). But mentally I'm bringing my A game because I'm not sick. I'm WELL. And if a lump disagrees with this assessment of myself, then we'll cut it out. And if the lump decides to go viral before we get it cut out, then we'll kill it with chemicals. And after the lump and its cancerous offspring are out we'll irradiate the premises to make sure it's gone for good.
See? I'm a professional. This is no big deal.
Also, I got a preview of the results. Wanna hear? Dr. Radiologist thinks that 1-2 lymph nodes are the culprit(s). The one that I can feel is a tiny bit enlarged. A neighboring lymph node is both a tiny bit enlarged and has slightly increased metabolic activity. However, he reminded me that lymph nodes commonly get enlarged when they are busy fighting an infection. I don't feel sick, but I have been exposed to illnesses so perhaps my lymph nodes are busy. His recommendation is to have another breast ultrasound in 2 months. I'm not holding my breath on that because I think it's entirely possible that Dr. O will want a biopsy tomorrow, but that's okay. Biopsies are the best way to learn what's going on!
I'll end with the good omen that was Dr. Radiologist. It was the same radiologist who performed my spine biopsy, and he is the best radiologist in town. I told him that I was thrilled that he was on my case (the way my clinic works, it's a lottery which of the 8 or so radiologists assess your pictures). After describing the cause of my lump(s) to me, he launched into the usual doctor spiel about how we don't really want to do a biopsy unless it was absolutely necessary...I cut him off and said that I am perfectly willing to call up Dr. Surgeon and have a biopsy right that second. I am not afraid of using biopsies to get answers; in fact, biopsies have been the only way I have gotten most answers. Dr. Radiologist replied with, oh, well, then I'll talk with Dr. Firstname Surgeon about it. In fact, he was going to see him tonight and converse casually about my case.
Brilliant! One point for having a team of talented medical professionals working together to work for me, and two points for living in a small town.
Everything's fine. Time to watch some Olympics!
Thursday, February 13, 2014
Friday, October 25, 2013
Repost: Evolution of a scar
I've done several posts on reconstruction and body image, and this is one of my favorites because it touches on almost all of the variables that I have thought about at some point. I still have no desire whatsoever to reconstruct my missing breast. My scar still changes, but like my emotional recovery from cancer it is no longer acute.
I've been doing some reading lately about breast reconstruction. Not about the gross science-y stuff about reconstruction, but the social and psychological stuff. I'm not at all considering reconstruction, but now that I'm not in the thick of cancer treatment I've found myself curious about why women get reconstruction. Yea yea, isn't it obvious that the appearance of two breasts is better than one or no breasts? This is probably what I would have thought, if I had thought about it Before. But now that I've journeyed through the cancer treatment gauntlet, I'm not so sure.
First of all, surgeries are both painful and a pain in the a$$. Everything hurts, and continues to hurt long after the hurt is supposed to be gone. Electing for surgeries that are not a necessary part of cancer treatment is currently beyond my capacity.
Secondly, if I was uncomfortable with artificial body parts before, why should I suddenly be more comfortable now? Especially with a relatively expendable body part?
We all know, or at least have learned by now, that I am a practical person. The above viewpoints should therefore come as no surprise. However, I am in full support of other women choosing reconstruction. I am therefore trying to learn why they make this choice. My purpose is not to see if I'm right or wrong, but to learn about these other viewpoints.
In my small, non-scientific survey, I have found that the perception of others is the primary reason that women choose to reconstruct. I have determined this by reading dozens of anecdotes in numerous books. Most women want to look good (normal?) in clothes, and they want to be sexually attractive. What I find interesting about this is that it seems to me that retaining attractiveness is at their own expense, both in terms of potential medical problems with the reconstruction and the fact that the reconstructed breast often has no feeling. Did you know that latter fact, about the loss of feeling? It seems obvious, but I never thought about it before and I didn't know that. It seems to me that if I had no feeling in my reconstructed breast that that would be a constant reminder that it was for someone else and not me. Call me selfish, but I would hate that.
The other way of thinking about "wanting to look good in clothes" is a positive self-image. Many women state that they just don't feel like women without the appearance of two breasts. This underscores the importance of continued improvements in reconstruction technology and healthcare support. Also, mastectomy is not the only condition that might lead someone to opt for breast work. Reconstruction is a good choice for women who may psychologically struggle otherwise.
I'm sure there are others, but I've only read about one woman thus far with an attitude similar to mine. She thinks of herself as an Amazon, a strong and active woman who can now execute her life with improved physical prowess in the absence of a breast. I don't yet see myself as an Amazon, but I can relate to the improved functionality of my new physique.
Also, I'm learning to see the beauty in my asymmetry. I hold my head high and walk around with confidence. My spouse constantly affirms my beauty. I have bought a few new shirts that are asymmetric and complimentary. I can now see asymmetry everywhere in the world, and it has unusual beauty. I truly do not feel that I need a reconstructed breast.
My scar itself is also remarkable. It keeps changing. Will it ever stop? It started pink, then turned to white (perhaps because of radiation?), then pink with white in the middle, then red with white in the middle, and now a deep red. It's slightly raised in some places, yet exceedingly smooth in others. It itches sometimes. The evolution of my scar is symbolic of the psychological journey about breasts, sexuality, and beauty that I am on. Always interesting and never done changing.
I've been doing some reading lately about breast reconstruction. Not about the gross science-y stuff about reconstruction, but the social and psychological stuff. I'm not at all considering reconstruction, but now that I'm not in the thick of cancer treatment I've found myself curious about why women get reconstruction. Yea yea, isn't it obvious that the appearance of two breasts is better than one or no breasts? This is probably what I would have thought, if I had thought about it Before. But now that I've journeyed through the cancer treatment gauntlet, I'm not so sure.
First of all, surgeries are both painful and a pain in the a$$. Everything hurts, and continues to hurt long after the hurt is supposed to be gone. Electing for surgeries that are not a necessary part of cancer treatment is currently beyond my capacity.
Secondly, if I was uncomfortable with artificial body parts before, why should I suddenly be more comfortable now? Especially with a relatively expendable body part?
We all know, or at least have learned by now, that I am a practical person. The above viewpoints should therefore come as no surprise. However, I am in full support of other women choosing reconstruction. I am therefore trying to learn why they make this choice. My purpose is not to see if I'm right or wrong, but to learn about these other viewpoints.
In my small, non-scientific survey, I have found that the perception of others is the primary reason that women choose to reconstruct. I have determined this by reading dozens of anecdotes in numerous books. Most women want to look good (normal?) in clothes, and they want to be sexually attractive. What I find interesting about this is that it seems to me that retaining attractiveness is at their own expense, both in terms of potential medical problems with the reconstruction and the fact that the reconstructed breast often has no feeling. Did you know that latter fact, about the loss of feeling? It seems obvious, but I never thought about it before and I didn't know that. It seems to me that if I had no feeling in my reconstructed breast that that would be a constant reminder that it was for someone else and not me. Call me selfish, but I would hate that.
The other way of thinking about "wanting to look good in clothes" is a positive self-image. Many women state that they just don't feel like women without the appearance of two breasts. This underscores the importance of continued improvements in reconstruction technology and healthcare support. Also, mastectomy is not the only condition that might lead someone to opt for breast work. Reconstruction is a good choice for women who may psychologically struggle otherwise.
I'm sure there are others, but I've only read about one woman thus far with an attitude similar to mine. She thinks of herself as an Amazon, a strong and active woman who can now execute her life with improved physical prowess in the absence of a breast. I don't yet see myself as an Amazon, but I can relate to the improved functionality of my new physique.
Also, I'm learning to see the beauty in my asymmetry. I hold my head high and walk around with confidence. My spouse constantly affirms my beauty. I have bought a few new shirts that are asymmetric and complimentary. I can now see asymmetry everywhere in the world, and it has unusual beauty. I truly do not feel that I need a reconstructed breast.
My scar itself is also remarkable. It keeps changing. Will it ever stop? It started pink, then turned to white (perhaps because of radiation?), then pink with white in the middle, then red with white in the middle, and now a deep red. It's slightly raised in some places, yet exceedingly smooth in others. It itches sometimes. The evolution of my scar is symbolic of the psychological journey about breasts, sexuality, and beauty that I am on. Always interesting and never done changing.
Thursday, October 24, 2013
Repost: Believe in things you don't understand
I originally wrote this post during radiation therapy. I chose to repost it because it's upbeat and informative. It was tough to chose between this one and the one where the owl omen appeared in my backyard, but see how I managed to sneak in a link so that you can find it own your own. Speaking of sneaking stuff in, happy 33rd birthday to me today!
As I was hoping last week, I have indeed adjusted to this crazy radiation schedule. It is not nearly as exhausting as it was last week, although I find it hard to believe that it's only been one week. The electron doses started on Monday and just take an extra few minutes. Well, the electron dose itself takes only ~20 seconds, but it takes a minute or two for the technicians to get things set up. My skin is starting to turn a little bit pink, as predicted. Still not red. Still not sore. Huzzah!
In other health-related news, I have 100% range of motion in my left arm. It is not pain-free, in neither the nerves nor the muscles, so I will continue physical therapy for a bit. I do my exercises every day, and I can feel improvement every day. I've started to forget that I used to bump into a breast when I reached across my body. I've even grown accustomed to the burning nerve pain in my arm. It's sensitive, but not crippling. Again, huzzah!
While I was getting zapped today, I was thinking about all of the particles that were poking through my skin. I couldn't feel these particles, but I nonetheless thought of my poke tally. Was there a way to calculate how many particles (photons or electrons) were "poking" me in a single dose of radiation? So that I could start a particle poke tally? I asked this question of one of the fabulous technicians, and she introduced me to the physicist. He seemed delighted to talk shop with someone and explained that the radiation machine is calibrated by measuring how it ionizes a known amount of air. This is then converted mathematically into the ionization of an amount of liquid, liquid being of interest because a human body is ~60% liquid (today mine is ~70% liquid due to the incredible amount of snot I'm producing; thank you sweet Eleanor for giving me your cold). This is further converted to the unit Joules per gram, and he said from here we could calculate exactly how many Joules-per-gram of radiation I am receiving in a single dose. It sounded like it would take a fair bit of effort on his part, and because this is an unnecessary exercise I said no thank you. He further explained that the machine is tested every morning to see that it functions within good parameters, and if it ever falls out of those parameters he re-calibrates it with the air ionization thing. He also said that he belongs to some Houston-based national radiation calibration organization and follows their calibration protocol annually. I came away from the discussion with something much better than a particle poke tally: confidence in the machine and the people running it. But part of me still wants to know something quantitative about this radiation rather than the empirical "20 seconds of photons here, 10 seconds of photons there, and 20 seconds of electrons there." It's a little hard for me to grasp, but I guess I'm just biased towards whole atoms.
It has been a cold, rainy, sleety day here today. To combat the cooped-up feeling, the girls and I had a disco dance party this evening. Cinderella even made an appearance:
Pandora radio was our DJ, and one of the songs that popped up was Stevie Wonder's Superstition. I know I've already posted a Stevie Wonder song, but this one really resonated with my thoughts after the discussion with the physicist today. Radiation at times feels like it could be superstitious: I lay there with my arms above my head while a machine waves an over-sized magic wand above my former cancer. Bibbity bobbity ZAP! and the cancer is gone. I know it's not superstition, however, and that's why I've found another connection between this song and radiation. The clavinet riff, which is the song's trademark, sounds like the buzzing noise made by the radiation machine when it is zapping me. I wish radiation were as funky as Stevie. Below is the jam-session version of Superstition, performed on Sesame Street. Smile.
As I was hoping last week, I have indeed adjusted to this crazy radiation schedule. It is not nearly as exhausting as it was last week, although I find it hard to believe that it's only been one week. The electron doses started on Monday and just take an extra few minutes. Well, the electron dose itself takes only ~20 seconds, but it takes a minute or two for the technicians to get things set up. My skin is starting to turn a little bit pink, as predicted. Still not red. Still not sore. Huzzah!
In other health-related news, I have 100% range of motion in my left arm. It is not pain-free, in neither the nerves nor the muscles, so I will continue physical therapy for a bit. I do my exercises every day, and I can feel improvement every day. I've started to forget that I used to bump into a breast when I reached across my body. I've even grown accustomed to the burning nerve pain in my arm. It's sensitive, but not crippling. Again, huzzah!
While I was getting zapped today, I was thinking about all of the particles that were poking through my skin. I couldn't feel these particles, but I nonetheless thought of my poke tally. Was there a way to calculate how many particles (photons or electrons) were "poking" me in a single dose of radiation? So that I could start a particle poke tally? I asked this question of one of the fabulous technicians, and she introduced me to the physicist. He seemed delighted to talk shop with someone and explained that the radiation machine is calibrated by measuring how it ionizes a known amount of air. This is then converted mathematically into the ionization of an amount of liquid, liquid being of interest because a human body is ~60% liquid (today mine is ~70% liquid due to the incredible amount of snot I'm producing; thank you sweet Eleanor for giving me your cold). This is further converted to the unit Joules per gram, and he said from here we could calculate exactly how many Joules-per-gram of radiation I am receiving in a single dose. It sounded like it would take a fair bit of effort on his part, and because this is an unnecessary exercise I said no thank you. He further explained that the machine is tested every morning to see that it functions within good parameters, and if it ever falls out of those parameters he re-calibrates it with the air ionization thing. He also said that he belongs to some Houston-based national radiation calibration organization and follows their calibration protocol annually. I came away from the discussion with something much better than a particle poke tally: confidence in the machine and the people running it. But part of me still wants to know something quantitative about this radiation rather than the empirical "20 seconds of photons here, 10 seconds of photons there, and 20 seconds of electrons there." It's a little hard for me to grasp, but I guess I'm just biased towards whole atoms.
It has been a cold, rainy, sleety day here today. To combat the cooped-up feeling, the girls and I had a disco dance party this evening. Cinderella even made an appearance:
Pandora radio was our DJ, and one of the songs that popped up was Stevie Wonder's Superstition. I know I've already posted a Stevie Wonder song, but this one really resonated with my thoughts after the discussion with the physicist today. Radiation at times feels like it could be superstitious: I lay there with my arms above my head while a machine waves an over-sized magic wand above my former cancer. Bibbity bobbity ZAP! and the cancer is gone. I know it's not superstition, however, and that's why I've found another connection between this song and radiation. The clavinet riff, which is the song's trademark, sounds like the buzzing noise made by the radiation machine when it is zapping me. I wish radiation were as funky as Stevie. Below is the jam-session version of Superstition, performed on Sesame Street. Smile.
Wednesday, October 23, 2013
Repost: Stages
Here is another blast-from-my-past to celebrate IBC awareness week. I wrote this post while recovering from the mastectomy. I like this post because of the way I broke down the healing process. It became the best way for me to cope with the dynamic interplay of pain, drainage, numbness, and fatigue.
Okay, this healing-from-a-mastectomy-and-axillary-lymph-node-removal business is going to take a lot longer than I realized.
I have resumed taking the Tylenol 3. On Friday my pain took a turn for the worse and steadily increased all weekend. Today is the first day that my pain is as low as it was last Thursday. The only explanations that I've come up with are that 1) perhaps it took several days for the excellent surgery drugs to totally wear off, and 2) I have lots of numbness in the affected area that is reducing with time, allowing me to feel what's really going on in there. Regardless, Tylenol 3 is only half of the solution. The other half is to sit on my tush and prop my left arm on a pillow. This latter half is tricky because it is surprisingly difficult to actually do nothing. My legs aren't broken and I'm not chemo-fatigued. However, it turns out that healing from such a major surgery takes a lot of energy, and doing things with parts of my body seemingly independent of my upper left quadrant actually require efforts from that department. Even standing still increases my pain and fatigue. Getting back to normal is just going to take more time than I imagined.
To resolve the disconnect between my actual and expected healing rates, I have started to think about my healing in terms of stages. By breaking this massive healing process down into achievable bits I am hoping to increase my patience with the process. I don't yet know what all of the stages are, but here's a brief sketch of the stages that I have experienced: 1) surgery, 2) surgery detox, 3) TLC of the wound and drains (I have two long tubes running from the inside of my wound to two bulbs that I pin to my shirt or pants. The purpose of these drains is to collect fluid that would otherwise cause swelling in my wound. The drains have to be emptied twice a day, and the point of entry into my body has to be protected to prevent infection. They are annoying and disgusting, to say the least). Here are the upcoming stages that I am anxiously awaiting: 4) drain removal, 5) steri-strip removal (we've controlled the blistering with Benadryl but the queue of strips is still quite itchy), 6) physical therapy, 7) radiation. Part of my impatience with the healing process is due to my lack of knowledge about it. I wish I had a mastectomy manual. The other part of my impatience probably results from spending all winter in chemotherapy. I am so sick of being laid up.
In happier news, you should see my hair. It is growing almost as fast as the cucumbers we started from seed indoors. Its varying lengths make it oh so soft. Just a few baldish spots to go.
Also happy news is that my brother won't need surgery on his shoulder. He will wear his left arm in a sling for 6-8 weeks until the clavicle heals, but the shoulder itself is fine.
The sun is shining and I'm still smiling.
Okay, this healing-from-a-mastectomy-and-axillary-lymph-node-removal business is going to take a lot longer than I realized.
I have resumed taking the Tylenol 3. On Friday my pain took a turn for the worse and steadily increased all weekend. Today is the first day that my pain is as low as it was last Thursday. The only explanations that I've come up with are that 1) perhaps it took several days for the excellent surgery drugs to totally wear off, and 2) I have lots of numbness in the affected area that is reducing with time, allowing me to feel what's really going on in there. Regardless, Tylenol 3 is only half of the solution. The other half is to sit on my tush and prop my left arm on a pillow. This latter half is tricky because it is surprisingly difficult to actually do nothing. My legs aren't broken and I'm not chemo-fatigued. However, it turns out that healing from such a major surgery takes a lot of energy, and doing things with parts of my body seemingly independent of my upper left quadrant actually require efforts from that department. Even standing still increases my pain and fatigue. Getting back to normal is just going to take more time than I imagined.
To resolve the disconnect between my actual and expected healing rates, I have started to think about my healing in terms of stages. By breaking this massive healing process down into achievable bits I am hoping to increase my patience with the process. I don't yet know what all of the stages are, but here's a brief sketch of the stages that I have experienced: 1) surgery, 2) surgery detox, 3) TLC of the wound and drains (I have two long tubes running from the inside of my wound to two bulbs that I pin to my shirt or pants. The purpose of these drains is to collect fluid that would otherwise cause swelling in my wound. The drains have to be emptied twice a day, and the point of entry into my body has to be protected to prevent infection. They are annoying and disgusting, to say the least). Here are the upcoming stages that I am anxiously awaiting: 4) drain removal, 5) steri-strip removal (we've controlled the blistering with Benadryl but the queue of strips is still quite itchy), 6) physical therapy, 7) radiation. Part of my impatience with the healing process is due to my lack of knowledge about it. I wish I had a mastectomy manual. The other part of my impatience probably results from spending all winter in chemotherapy. I am so sick of being laid up.
In happier news, you should see my hair. It is growing almost as fast as the cucumbers we started from seed indoors. Its varying lengths make it oh so soft. Just a few baldish spots to go.
Also happy news is that my brother won't need surgery on his shoulder. He will wear his left arm in a sling for 6-8 weeks until the clavicle heals, but the shoulder itself is fine.
The sun is shining and I'm still smiling.
Tuesday, October 22, 2013
Repost: The 60th day
To celebrate IBC awareness week, I decided to repost some of my favorite writings from during cancer treatment. This piece is from near the end of my hard chemo treatments. Although I wasn't feeling my best physically, I was emotionally delighted. I think that comes through here.
Business first by way of an updated poke tally. I had a bonus port poke and right arm stick with the sinus infection a few weeks ago, and yesterday I had twin left-right arm sticks for the PET scan. There will be another poke today for the MRI scans and another poke tomorrow to check my platelets (they were dangerously low as of yesterday, but still above the transfusion threshold), but where will the pokes be? No one knows.
Business first by way of an updated poke tally. I had a bonus port poke and right arm stick with the sinus infection a few weeks ago, and yesterday I had twin left-right arm sticks for the PET scan. There will be another poke today for the MRI scans and another poke tomorrow to check my platelets (they were dangerously low as of yesterday, but still above the transfusion threshold), but where will the pokes be? No one knows.
"port" 18
tummy 6
left arm 5
right arm 6
left breast 1
superior vena cava 1
I am slowly climbing out of the chemo fog. The crumminess lurks, but I can participate in family life in moderation. I unloaded the dishwasher this morning, and now I am recovering from that exertion. After a grand sit I will start making lunch, followed by another grand sit. I need to conserve some energy for my scans this afternoon.
"Scans" is plural because what was supposed to be just a breast MRI scan is now also a chest scan. This is because the PET scan did not sufficiently visualize my thoracic spine (fancy words for my back, I think) and so Dr. Oncologist wants more pictures. I've been told there's nothing to worry about, she just wants a better view. She is a thorough oncologist, and for that we are grateful. So let's not worry.
Instead let's ruminate on the fact that today is approximately my 60th day of being sick <insert imaginary balloons and confetti here>. This is worth celebrating because it means that the worst of the chemotherapy is behind me. For the record, I can't believe that I have spent 60 days being sick. It was fast, and also slow. It was extremely hard, and also painfully simple. It was a heck of a way to more or less skip winter.
You KNOW I have songs to express my feelings. There are two. Click here for the first song, by Norah Jones. This is the song for the weary yet peaceful me, sitting in a deck chair on a Caribbean beach at dusk. I close my eyes and breath deeply of the warm salty air. I feel my children sleeping in a house behind me. I feel the earth turning beneath me. I am enveloped in this peace.
Good try, Norah, but that doesn't quite capture everything I'm feeling right now. Click here to listen to Carlos Santana's rendition of a different song, a song for the hbomb. This is the song for the relieved and exuberant me, casting the fatigue and the deck chair into the sea. The moon is high and I raise my face to it as I passionately dance in the sand. My untethered hair flies about my face. Skirt and sand cling to the sweat on my thighs. I turn the earth with my being.
That's better. Thank you, Carlos.
Monday, October 21, 2013
When in doubt, rule it out!
I just realized that this is the 200th post on SGPC. How fitting that it should happen at the start of IBC awareness week! Thank you, everyone, for continuing to read this blog and supporting the author. This continues to be a fun and important outlet for me, even though at times I don't know what to write about. :)
Happy 3rd annual Inflammatory Breast Cancer Awareness week! Can you believe that it's been two whole years since the first IBC awareness week in Iowa? I can't. The first IBC awareness week observation occurred within a few weeks of my last herceptin treatment. Wow. I'm almost a two-year cancer survivor.
The IBC awareness week started pretty simply enough. My sisters and cousin initiated the paperwork to have the governor proclaim the observation. A whole bunch of us went to the capitol to watch the governor sign the proclamation. It was a remarkable event because it occurred at the end of a long journey through cancer treatment, and it brought together everyone who supported me for the purpose of IBC education. Every year since then, the state offers to renew it automatically. My sister always says yes please, and so the governor signs a new proclamation that is identical to the first and then mails it to me. Yes, I have a stack of IBC awareness week proclamations. Doesn't everyone?
For me, October is more than just breast cancer awareness month. It is about IBC awareness. It is about my breast cancer journey that began on Oct. 20, 2010. It is about learning about other breast cancer journeys, both from patients and support people. No two breast cancer journeys are the same, just as no two patients are the same. In the spirit of learning about other people's IBC journeys and how they coped with them, here are a few IBC blogs from around web:
Like myself, blogger Lyn was diagnosed with IBC near her 30th birthday. She opted to reconstruct her breast, but unfortunately she is suffering numerous complications. Fortunately her cancer continues to be in remission and she is doing well. http://lynkelley.wordpress.com/2012/10/30/955/ "Life is short and we may get sick and not know where we will be in a year, but you also may be here much longer than you planned for as well"
Another blogger, Jenny, has a great blog about getting rid of her IBC, which she named Gertrude. http://getoutgertrude.wordpress.com/2008/08/ Unfortunately Jenny succumbed to her cancer a year ago, but her outstanding blog remains as a resource for people interested in breast cancer and specifically IBC. This is the most depressing aspect of IBC blogs--they often exist with their authors for only a short while.
This blogger is dealing with stage IV IBC and is "preparing for the future of her illness" http://bluecollarlesbian.blogspot.com/2013_08_01_archive.html Pretty raw stuff here, and the writing is darn good.
Yea, I'm depressed now, too. I had good intentions for collecting this list, but clearly this was not my best idea. All it did was remind me of why I never do Google searches of IBC. Ugh.
But seriously, the minimum that you need to know are the SIGNS and SYMPTOMS of IBC (copied from www.eraseIBC.org):
Happy 3rd annual Inflammatory Breast Cancer Awareness week! Can you believe that it's been two whole years since the first IBC awareness week in Iowa? I can't. The first IBC awareness week observation occurred within a few weeks of my last herceptin treatment. Wow. I'm almost a two-year cancer survivor.
The IBC awareness week started pretty simply enough. My sisters and cousin initiated the paperwork to have the governor proclaim the observation. A whole bunch of us went to the capitol to watch the governor sign the proclamation. It was a remarkable event because it occurred at the end of a long journey through cancer treatment, and it brought together everyone who supported me for the purpose of IBC education. Every year since then, the state offers to renew it automatically. My sister always says yes please, and so the governor signs a new proclamation that is identical to the first and then mails it to me. Yes, I have a stack of IBC awareness week proclamations. Doesn't everyone?
For me, October is more than just breast cancer awareness month. It is about IBC awareness. It is about my breast cancer journey that began on Oct. 20, 2010. It is about learning about other breast cancer journeys, both from patients and support people. No two breast cancer journeys are the same, just as no two patients are the same. In the spirit of learning about other people's IBC journeys and how they coped with them, here are a few IBC blogs from around web:
Like myself, blogger Lyn was diagnosed with IBC near her 30th birthday. She opted to reconstruct her breast, but unfortunately she is suffering numerous complications. Fortunately her cancer continues to be in remission and she is doing well. http://lynkelley.wordpress.com/2012/10/30/955/ "Life is short and we may get sick and not know where we will be in a year, but you also may be here much longer than you planned for as well"
Another blogger, Jenny, has a great blog about getting rid of her IBC, which she named Gertrude. http://getoutgertrude.wordpress.com/2008/08/ Unfortunately Jenny succumbed to her cancer a year ago, but her outstanding blog remains as a resource for people interested in breast cancer and specifically IBC. This is the most depressing aspect of IBC blogs--they often exist with their authors for only a short while.
This blogger is dealing with stage IV IBC and is "preparing for the future of her illness" http://bluecollarlesbian.blogspot.com/2013_08_01_archive.html Pretty raw stuff here, and the writing is darn good.
Yea, I'm depressed now, too. I had good intentions for collecting this list, but clearly this was not my best idea. All it did was remind me of why I never do Google searches of IBC. Ugh.
But seriously, the minimum that you need to know are the SIGNS and SYMPTOMS of IBC (copied from www.eraseIBC.org):
IBC symptoms may include one or some of the below:
- A breast that appears discolored; (red, purple, pink or bruised)
- A tender, firm and enlarged breast (sometimes overnight)
- A warm feeling in the breast (or may feel hot/warm to the touch)
- Persistent Itching of the breast (not relieved with cream or salve)
- Shooting or stabbing pain
- Ridged or dimpled skin texture, similar to an orange peel
- Thickened areas of breast tissue
- Enlarged lymph nodes under the arm, above/below the collarbone
- Flattening or retraction of the nipple
- Swollen or crusted skin on the nipple
- Change in color of the skin around the nipple (areola)
- A hardened area in the breast similar to a pencil lead, not a lump
If one or more of these symptoms continue for more than a week, talk to a physician immediately, and find an expert with experience in treating this particular type of breast cancer. Many women have to demand that their physicians "rule out" IBC, and (therefore) become their own best advocate, as more education is needed in the medical community regarding this form of breast cancer.
Be well, everyone!Monday, September 9, 2013
It ends where it began
I began by treating it like a normal day. I helped the kids get dressed, I ate some breakfast, I drove to work via Azalea's elementary school. I signed some timesheets, I invited reviewers on a manuscript, I labeled baggies for tomorrow's fecal sample collection. Then I came home for lunch and walked with Ian to the clinic, which started the day all over again.
The General Surgery waiting room is one of the best waiting rooms at the clinic: a view of the atrium, vintage National Geographic magazines, HGTV softly streaming on the television, and rows of empty chairs. I was reminded of my previous visits to this waiting room over three years ago. The first visits, back in the "it's certainly not cancer" days, were pleasant enough, but the last visit on the day before diagnosis had a certain amount of apprehension and doubt. In drawing myself back to that day I began to feel the gravity of the present day. I was beginning to explore these thoughts when I was called to the procedure room.
Ian walked back with me although he did not intend to stay back there. A nurse checked me in and gave me a cape. I changed into the cape.
Dr. Surgeon did not keep me waiting long. When I saw Dr. Surgeon I had so much to say to him that I couldn't say anything at all. Dr. Surgeon is the one who found the cancer, the one who put my port in, and the one who shaved his head for my good luck. I wanted to thank him for giving me my life. Instead I gave him a hug and a grimace-smile that probably looked like I was teasing about something but instead meant that I was trying not to cry or choke or laugh. He made a sweeping gesture at the procedure table, inviting me to lie down and get started. He and the nurse prepared the field around my right chest, surrounding my port. He started to talk to me about the book he's currently reading, which happens to be my favorite book in the universe, Cutting for Stone by Abraham Verghese. This reminded me to share my favorite quotation:
"Would that I had the chance in my sons' lifetime and my own to one day explain to them all the forces that moved me." --Abraham Verghese in his memoir, The Tennis Partner.
But I didn't say it because I still couldn't talk. You see, saying these words would have been poignant because Dr. Surgeon, Dr. Oncologist, Dr. Surgical Oncologist, and Dr. Radiation Oncologist are the ones who gave me more chances to explain to my daughters that which moves me. I had no hope of sharing this on account of the lump caught in my throat. I'll have to write a note. I'll have to write each of them a note.
He numbed the area with local anesthetic, but the tugging combined with the sounds of calculated flesh-cutting forced me to stop talking. I employed some deep breathing and took myself away.
Once the incision was made, he simply snipped the few stitches that were securing my port to my muscle and pulled it out. I felt a bit more tugging as the 8 inches of cord slipped out of my superior vena cava, and even more tugging as he stitched up the blood vessel encasing the port (because the superior vena cava is truly a superior vein and over the years had generated a cellular tube around my port cord). This unnatural vessel-around-the-port-cord is actually incredibly useful for the healing process because without the cord inside, it collapses on itself and sticks together, preventing my superior vena cava from bleeding excessively.
He dropped my port into the baggie I had brought, and Ian placed it in the Stride Rite shoebox (aka biocontainment and a secondary container). This thing is too precious to be incinerated with the other biohazard waste. I'm keeping it along with all of my other cancer mementos.
I got dressed and sat down in a chair next to the procedure table. Ian had stayed in the room the whole time (he said he didn't see anything) and was quietly supportive. We tried to hold hands but it was an awkward angle, location, and mood. After a few moments he gently pointed out that we were free to leave whenever I was ready. I thought I was waiting for something--outpatient wound care, pink follow-up slip, closure of any sort--and felt foolish for lingering.
When I got home I wasn't sure what to do with myself. I was a pot of emotions with a dash of pain. I distracted myself with a trip to the craft store to pick up a few art supplies for the girls. Then I picked up Eleanor from preschool.
My sweet little Eleanor. She remembered that today was the day that I was having my port removed. She ran across her classroom and asked me if my port was gone. She stood up on her tippy toes and tried to touch the place on my chest where my port used to be. She asked if she could see my owie. I said yes to everything and tried not to choke for the second time today. I flipped my sunglasses off my head and over my eyes so that she wouldn't see that tears were forming in my eyes.
At that moment I realized that Eleanor never knew me without a port. When she was little and learning her body parts she would point to mommy's port and daddy's port, and we'd have to explain that only mommy had a port. No one else in her life had a port. Now mommy doesn't need her port and so it doesn't have to stay in there anymore.
At dinner we continued the conversation about my port, and this inspired questions about my nipple, namely whether I can keep the one I have and whether I'll ever get my other one back. We talked about keeping healthy body parts and removing sick ones. We also talked about replacing useful body parts like legs, but how my breasts already served their biological purpose and so I don't need to replace the one that I lost. I'm glad that my daughters ask me questions. I find it easier to answer their questions than to strike up random conversations about all these things that I've done.
Then I hopped on my bike to attend what ended up feeling like my third day today. Yoga. This was my first night of yoga class in almost 2 months due to a brief lapse in the schedule. I decided to attend class with the intention of skipping strenuous poses while engaging in meditation.
Today's class was focused on energy and on moving energy around in the body. I tried to meditate my energy away from the pain of my new incision, away from the fear of cancer ever recurring, and away from the lump that had clogged my throat for most of the day. I moved energy toward the bliss in my heart center. As the energy breathing up and down my spine dissolved the lump in my throat, the throat energy worked its way upward and started leaking out of my eyes. I didn't want to be distracted by the leakage so I tried not to notice it. With moist cheeks I sat in the final yoga pose, bending for a bow not to the instructor but to myself. Yes, it's true that I was the weird lady who cried through yoga tonight.
Afterwards I wanted desperately to thank the instructor for a beautiful class. For the second time today I couldn't speak, but I think I avoided the grimace-smile this time. Guess I'll have to rely on another note. Fortunately my prose is kinder than my oral skills.
I was powerless against my tears for the entire pedal home. By the time I entered the house I had managed to divert the leaking energy from my eyes to my hands. I worked with the girls on a new art project, which required me to poke holes in small cardboard boxes that will later become pipecleaner-hair monster masks. I think it's appropriate that the last of today's throat energy will be manifested as colorful pipecleaner hair on monster masks.
And to think that I was going to go back to work after the procedure today! Not because I'm a work-a-holic, but because it didn't occur to me that I'd need the afternoon off. Ha! That was so yesterday. After today I think I need a vacation.
The General Surgery waiting room is one of the best waiting rooms at the clinic: a view of the atrium, vintage National Geographic magazines, HGTV softly streaming on the television, and rows of empty chairs. I was reminded of my previous visits to this waiting room over three years ago. The first visits, back in the "it's certainly not cancer" days, were pleasant enough, but the last visit on the day before diagnosis had a certain amount of apprehension and doubt. In drawing myself back to that day I began to feel the gravity of the present day. I was beginning to explore these thoughts when I was called to the procedure room.
Ian walked back with me although he did not intend to stay back there. A nurse checked me in and gave me a cape. I changed into the cape.
Dr. Surgeon did not keep me waiting long. When I saw Dr. Surgeon I had so much to say to him that I couldn't say anything at all. Dr. Surgeon is the one who found the cancer, the one who put my port in, and the one who shaved his head for my good luck. I wanted to thank him for giving me my life. Instead I gave him a hug and a grimace-smile that probably looked like I was teasing about something but instead meant that I was trying not to cry or choke or laugh. He made a sweeping gesture at the procedure table, inviting me to lie down and get started. He and the nurse prepared the field around my right chest, surrounding my port. He started to talk to me about the book he's currently reading, which happens to be my favorite book in the universe, Cutting for Stone by Abraham Verghese. This reminded me to share my favorite quotation:
"Would that I had the chance in my sons' lifetime and my own to one day explain to them all the forces that moved me." --Abraham Verghese in his memoir, The Tennis Partner.
But I didn't say it because I still couldn't talk. You see, saying these words would have been poignant because Dr. Surgeon, Dr. Oncologist, Dr. Surgical Oncologist, and Dr. Radiation Oncologist are the ones who gave me more chances to explain to my daughters that which moves me. I had no hope of sharing this on account of the lump caught in my throat. I'll have to write a note. I'll have to write each of them a note.
He numbed the area with local anesthetic, but the tugging combined with the sounds of calculated flesh-cutting forced me to stop talking. I employed some deep breathing and took myself away.
Once the incision was made, he simply snipped the few stitches that were securing my port to my muscle and pulled it out. I felt a bit more tugging as the 8 inches of cord slipped out of my superior vena cava, and even more tugging as he stitched up the blood vessel encasing the port (because the superior vena cava is truly a superior vein and over the years had generated a cellular tube around my port cord). This unnatural vessel-around-the-port-cord is actually incredibly useful for the healing process because without the cord inside, it collapses on itself and sticks together, preventing my superior vena cava from bleeding excessively.
He dropped my port into the baggie I had brought, and Ian placed it in the Stride Rite shoebox (aka biocontainment and a secondary container). This thing is too precious to be incinerated with the other biohazard waste. I'm keeping it along with all of my other cancer mementos.
 |
| This is my port, displayed adjacent to a nickel and a crayon for size references. The dark purple area in the center of the port is firm yet permeable material through which needles were stuck for blood access and chemotherapy administration. The part of the cord just above the purple port is where my superior vena cava crafted a vessel. The cord next to the crayon is the part that dangled in my bloodstream. |
When I got home I wasn't sure what to do with myself. I was a pot of emotions with a dash of pain. I distracted myself with a trip to the craft store to pick up a few art supplies for the girls. Then I picked up Eleanor from preschool.
My sweet little Eleanor. She remembered that today was the day that I was having my port removed. She ran across her classroom and asked me if my port was gone. She stood up on her tippy toes and tried to touch the place on my chest where my port used to be. She asked if she could see my owie. I said yes to everything and tried not to choke for the second time today. I flipped my sunglasses off my head and over my eyes so that she wouldn't see that tears were forming in my eyes.
At that moment I realized that Eleanor never knew me without a port. When she was little and learning her body parts she would point to mommy's port and daddy's port, and we'd have to explain that only mommy had a port. No one else in her life had a port. Now mommy doesn't need her port and so it doesn't have to stay in there anymore.
At dinner we continued the conversation about my port, and this inspired questions about my nipple, namely whether I can keep the one I have and whether I'll ever get my other one back. We talked about keeping healthy body parts and removing sick ones. We also talked about replacing useful body parts like legs, but how my breasts already served their biological purpose and so I don't need to replace the one that I lost. I'm glad that my daughters ask me questions. I find it easier to answer their questions than to strike up random conversations about all these things that I've done.
Then I hopped on my bike to attend what ended up feeling like my third day today. Yoga. This was my first night of yoga class in almost 2 months due to a brief lapse in the schedule. I decided to attend class with the intention of skipping strenuous poses while engaging in meditation.
Today's class was focused on energy and on moving energy around in the body. I tried to meditate my energy away from the pain of my new incision, away from the fear of cancer ever recurring, and away from the lump that had clogged my throat for most of the day. I moved energy toward the bliss in my heart center. As the energy breathing up and down my spine dissolved the lump in my throat, the throat energy worked its way upward and started leaking out of my eyes. I didn't want to be distracted by the leakage so I tried not to notice it. With moist cheeks I sat in the final yoga pose, bending for a bow not to the instructor but to myself. Yes, it's true that I was the weird lady who cried through yoga tonight.
Afterwards I wanted desperately to thank the instructor for a beautiful class. For the second time today I couldn't speak, but I think I avoided the grimace-smile this time. Guess I'll have to rely on another note. Fortunately my prose is kinder than my oral skills.
I was powerless against my tears for the entire pedal home. By the time I entered the house I had managed to divert the leaking energy from my eyes to my hands. I worked with the girls on a new art project, which required me to poke holes in small cardboard boxes that will later become pipecleaner-hair monster masks. I think it's appropriate that the last of today's throat energy will be manifested as colorful pipecleaner hair on monster masks.
And to think that I was going to go back to work after the procedure today! Not because I'm a work-a-holic, but because it didn't occur to me that I'd need the afternoon off. Ha! That was so yesterday. After today I think I need a vacation.
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