Art May 25, 2015Posted by Judy in Musings.
Tags: art, breast cancer, painting
1 comment so far
Two weekends ago, I spent a lovely day at Allerton Park with about 30 other cancer survivors at the first annual Cancer Survivor’s Retreat. It was a pretty typical retreat, replete with key note speakers, break out sessions, yummy snack foods, a nature walk, and lunch. Aside from getting to spend time with fellow cancer survivors, it was just nice to get away and do something just for me. My favorite part of the retreat was the art therapy class. I wasn’t planning on taking that class, but when I walked past the room, it called my name. I have to say that the directions that were given were quite vague. “Choose some colors that you like. Place the lighter colors in the center and darker colors on the outside.” That was it, the totality of the directions. I slowly chose my colors, hoping that maybe more directions would be given. Such was not the case, so I picked a yellow color and started smearing it around the canvas. Then I picked the fuchsia color and smeared that around.
It did not look good, at all!
I looked around and was mortified to see that everyone else seemed to be doing these lovely pieces, and mine was horrid. It looked like my 2 year old was fingerpainting. (Not that his fingerpainting is bad. It’s just that he’s two, and I’d rather not paint like a two year old, ya know?) Not wanting to give in, I just kept adding colors and layers and tweaking things here and there. I didn’t have a vision at all of what the painting would be. Mostly, I was just trying to make it look better than horrid. I worked at it for a long time. I found that most people around me seemed to be at a stopping point, and I just kept dabbing and adding until I was able to sit back and think, “Okay, this isn’t horrid anymore.” At that point, we were given the final directions, which were still obtuse.
“Draw two eggs. Draw a small circle on top of each egg. Draw a triangle at the bottom. Now fill it in with some branches.”
Suddenly, we all realized that we had been drawing a background for two birds sitting on a tree branch. While I was pleased that I’d figured that out, I wasn’t convinced that the birds would work with my painting. Again, I sat for a long time, thinking, and then adding the birds and branches. In the end, I was really happy with how it turned out. Everything came together so nicely, which wasn’t at all what I expected.
As we were sharing our work, it occurred to me that the painting was a good representation of my life the past 18ish months. Things started out nicely, and before I knew what was happening, cancer came and smacked me in the boob and turned everything into a disaster. It was so disastrously ugly that I sat back thinking, “How can this be!” Slowly, I worked through the surgeries and treatments, getting through one day at a time. I haven’t yet reached the point where I am pleased with the outcome, but I’ll keep working on that.
Eh, I guess that last paragraph is a little corny. The painting really wasn’t intended to be representative of anything. The whole goal was to just give us a way to unplug and tune in to ourselves for a bit. The whole process was very calming and allowed me to be pensive. (I’m thinking this might be a good technique to use with the babes when they get too wild and crazy. Just give them some paints and a canvas and have them quietly work. I have yet to try it, but I’ll let you know how it goes.) And apparently, a little bit corny with my reflections on life ;)
So this post would be useless without pics of the painting. I’ll tell you that the colors in the pics are not accurate. I could not for the life of me get the colors to come out right or get them in focus, even. If you want to get the full impact, you’ll just have to come for a visit =)
To operate or not May 17, 2015Posted by Judy in Musings.
Tags: breast cancer, decisions, fibroid, hysterectomy, myomectomy, surgery, uterine fibroid embolization
I need to pick your brains, my trusty blog followers. I need to make a pretty big decision in the next few weeks and, as with the mastectomy surgery decision, I’m kinda going crazy! But first, here’s a bit of background info. You may remember the fibroid that was “discovered” during my CT scan back in December of 2013. I say “discovered” because when the medical oncologist was all “Whoa! You need to get that looked at!”, I was all “Um, I already knew about that, it’s no biggie!” Well, it’s becoming a biggie and causing all sorts of problems. Actually, I’m not positive that it’s the root of my heartburn problem, the weird random pains in my side and my intestinal foolishness, but it’s large enough that I’m willing to bet it is the cause.
I’ve spent the past 2 or 3 months talking with different doctors to get my options sorted out and I’ve come up with two options: uterine fibroid embolization and myectomy/hysterectomy. (Although it seems this has nothing to do with breast cancer, it’s actually tangentially related, which is why I’m sharing it here!) I’ll give some brief explanations of the two procedures.
Uterine fibroid embolization (UFE) is a minimally invasive procedure where a catheter is inserted into the femoral artery, and then tiny pellets are injected to block the uterine arteries that are feeding the fibroid. The uterus is resilient, so it will figure out a different way to get blood flow. The fibroid, on the other hand, will slowly necrotize and shrink roughly 40-60%. The procedure requires an overnight stay in order to help manage the pain (which is apparently quite intense), and then you go home the next day and pretty much go about your business. What this procedure does not do is completely get rid of the fibroid, it just reduces the size, but it’s very successful in helping to do away with many of the symptoms.
The myectomy/hysterectomy surgeries are not really minimally invasive. A myectomy is the removal of just the fibroid. A hysterectomy is removal of the uterus, plus any of the following: ovaries, fallopian tubes, cervix. Both of these surgeries can be done either laparoscopically with a robot or with a large vertical incision in the abdomen. The robotic surgery would result in three small incisions in the abdomen, and would require roughly 2 weeks of lifting restrictions and an overall shorter recovery. The one downside is that due to the size of the fibroid, it would take a fair amount of time, 3-4 hours, to cut it up and remove it through the small incisions. Doing a traditional hysterectomy with the large abdominal incision would be much faster, about an hour and a half, but would require 6 weeks of lifting restrictions and lots of recovery time, because it’s major surgery. Unlike the UFE, both of these procedures would completely remove the fibroid.
So I should take a minute to discuss why this fibroid is a problem and needs to be removed. After all, many fibroids are asymptomatic and can just stay in place. In fact, I’ve had this fibroid for a long time, probably 5-8 years without any problems. So what’s the big idea now? Well, it’s enormous! Seriously, it’s like I’m 3 months pregnant because the fibroid is the size of a small melon! I had an MRI done of my abdominal area two weeks ago and we were able to see those images this past week. I wish I had them to share with you, as the fibroid is really quite remarkable. If you are looking from the side, the fibroid fills the entire space from my abdomen to my spine. When seen from the front, it takes up a third of the space from left to right. The top to bottom measurement is the largest, measuring 5 ½ inches. This means that the top of my uterus is just above my belly button. That’s not where it’s supposed to be, unless you are pregnant! Keeping in mind the fact that I’m 5’1” with a VERY short torso, this fibroid is basically taking up most of the space in my abdominal cavity, meaning that anything else that is supposed to be there is squished. Heck, they couldn’t even find the left ovary with the MRI because it was so squished behind something! So yes, something needs to be done. The question is, what?
I like charts, so I’ve made one with the pros and cons. But before I share the chart, you are probably wondering what in the world this has to do with breast cancer. I am currently taking an anti-estrogen medication called Tamoxifen, and I’ll be taking it for another 4.5 years. The purpose of the medication is so suppress the amount of estrogen so that in case there still is cancer floating around my body, it will have fewer places to attach itself. Here’s the rub: the drug works as both an agonist and antagonist towards estrogen. The estrogen in breast cells is treated antagonistically, or suppressed. The estrogen in the uterine cells are treated agonistically, or enhanced. See where this is going? The drug I’m taking to help prevent the return of breast cancer is making the fibroid grow. Nice, right?
The other way this is related to breast cancer is because of the ovaries. If I choose to have a hysterectomy, the question of whether or not to take the ovaries needs to be addressed. Generally, they don’t need to be taken. But, it might be wise to have them removed since they are biggest producer of estrogen and removing them would further reduce the chance of a recurrence. Estrogen is still produced in other parts of the body, so I’d still have to take drugs, but it would be a different drug called Arimidex, which is an aromatase inhibitor.
Okay, here’s the chart.
|UFE||Minimally invasive||Doesn’t get rid of the fibroid|
|Quick recovery time, just a few days||May or may not alleviate the symptoms|
|Relatively low risk|
|Done under moderate sedation, which means no intubation|
|Myectomy/hysterectomy||Completely removes the fibroid||Major surgery which requires intubation (LMA is not an option due to the position one is in during the surgery)|
|Robotic/laparoscopic||Shorter recovery time, 2-3 weeks||Longer surgery = longer intubation (3-4 hours)|
|Only 2 weeks of lifting restrictions||There’s no guarantee that this size of a fibroid can be treated laparoscopically. If it’s too large, they’ll have to switch to the traditional hysterectomy|
|Traditional hysterectomy||Shorter surgery = shorter intubation (1-2 hours)||6 weeks of lifting restrictions, which means no babywearing for the 2.5 year old, who is REALLY into that now. He already had to be weaned early, not sure I want to “wean” him from wearing early, too.|
|Long recovery time 4-6 weeks|
|Ovary removal||Greatly reduces the chance of breast cancer recurrence||Would require a change in medication. Right now, Tamoxifen is great, I have no side effects. Who knows if that will be the case with Arimidex. I could be swapping one set of problems with the fibroed for another set with the meds (hot flashes, joint pain, sore throat, nausea, vomiting, numbness/weakness in hand/wrist, etc.)|
I think I’ve thought of all of the pros and cons, but maybe a fresh set of eyes on the situation will reveal more. The other thing to consider is if I do the UFE and the results are not satisfactory, I can always opt to go the surgical route. If I do surgery off the bat, well, there’s no going back from that.
And one more thing . . . .when am I going to catch a break? I’m so done with doctors and health drama and foolishness. I want to be healthy again. That’s not too much to ask, is it? I’m just gonna go sulk in the corner while you all contemplate a solution to my current dilemma!
All clear, probably April 28, 2015Posted by Judy in Musings.
Tags: CT scans
I’m sure it comes as no surprise to anyone that foolishness continues to come out of the radiography department. When we met with the radiation oncologist today, he say, “Hmmm, well, they (the radiologists) didn’t do what I asked.” I responded, “You’re lucky you got what you did!” Nope, we weren’t cynical, not one bit! He had asked they the not only look at the spine (the bones, etc.), but also at the soft tissues, hence, the need for contrast. Only read the bone portion had been read. The rad onc looked at the scans and didn’t see anything alarming or amiss, but that’s also not his area of expertise. So, he is going to ask that another radiologist review it again, this time including the soft tissue in the analysis. If anything is wrong, I’ll get a call.
The upshot of the matter is that there’s nothing to be concerned about at this time. This is good. It doesn’t, however, give an answer for why the pain is there, so I’m just supposed to keep tabs on it. If it worsens, I should either request an MRI or see the people in the spine and neck center.
How’s that for a short, sweet, and to-the-point post? And, it’s good news! Huzzah!
The telephone game April 27, 2015Posted by Judy in Musings.
Tags: breast cancer, ct scan, healthcare, mistakes, pain
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Remember that childhood game, telephone? You know, the one where you whisper something in someone’s ear and the message has totally morphed by the time it gets to the person at the end of the line? Sometimes, it seems to me that health care providers like to play that game. It certainly seemed that way at my CT scan on Thursday. After returning to the lobby, I said to my friend who had accompanied me, “Well THAT’S going to make a good blog post!”
I arrived at the Heart and Vascular Institute at 9am, got checked in (by a former student, no less) and then got called back for the test. My friend and I stood up to go, but they asked her to stay in the lobby since the other waiting room was getting full. “It should only be about 5 minutes, anyway.” That should have been my first clue that something was up. I figured they were planning on getting me ready, then I’d go back to the lobby, then get called to the back again. I knew it couldn’t be a 5 minute test since the scheduler had said it would take about 25 minutes. We enter the room, she gets me situated on the platform and says, “This won’t take long at all.” I thought about just letting that comment slide, but knew that didn’t seem right. For starters, no-one had started an IV for the contrast, and while medical advances have been vast in the past few decades, I’m pretty sure they haven’t figured out a way to get contrast into your body through osmosis. So I piped up, “Aren’t you going to use contrast?” “No, we don’t use contrast for this test.” Crickets.
“Um, I’m pretty sure the doctor ordered a test with contrast.” “Really? Because scanning this part of the body doesn’t generally require contrast.” I tried to remain calm, even though my blood pressure was already on it’s way up. I explained the whole situation, including the confusion of the tech, the conversation between the radiologist and the radiation oncologist and the fact that the scheduler, a lovely man named Kelly, had made a point of putting a note in my chart stating that the test had already been verified with the doctor and it was to be the CT scan with and without contrast. This was all very awkward for me because I was laying on this platform with my head in a supremely uncomfortable head holder thing such that I couldn’t really move my head much to look at the tech. She thanked me saying, “That was really informative. I’ll be back.” and suggested that I sit up while I waited.
A few minutes passed, my mind racing the enter time. She came back in saying that there are protocols for the tests, and using contrast would fall outside of the protocol, so another person would be looking into it with the radiologist and getting back to me. Again, I was left alone with my racing thoughts. Just as I had gotten up to send my waiting friend a text message, a lady walked into the room, apologized for the confusion and said they were ready to get started. Again, I thought about letting the apology go without comment, but then decided that enough was enough. After asking me a set of standard question (Do you have diabetes? Are you allergic to Iodine? etc.), I said I had a question for her. “I’m just wondering how this whole mix-up even happened. It was clearly stated in my chart that this was the test the doctor wanted. Did people not see that message?” “Well, when we look things over the night before . . . . . . .” The rest of her words turned into the something very akin to what the adults would say on that kid’s show, whose name I can’t recall. The Muppet Show, maybe? . . . . .Wahw wahw wahw wahw wahw . .. . I looked away, shrugged my shoulders and said, “Whatever. I’m still not happy about it.”
I don’t tend to think very quickly on my feet. I’m forever wishing I would have said this, that or the next thing, making myself out to be much better at arguing with people than I really am. Fortunately, quick thinking was with me that morning. I continued, “If I wouldn’t have said anything, you guys would have done the wrong procedure! I shouldn’t have to check up on everyone to make sure they aren’t screwing up! I shouldn’t have to advocate for myself, yet here I am and I’m frustrated! I’m sorry you’re getting the blunt end of my frustration, but this sort of thing has been happening throughout my entire illness and I’m just tired of it!” She again apologized, stating that she felt especially terrible that she was involved in the mistake. (She had been the person to review the cases the night before in preparation for the day’s procedures.) “I’m actually on a committee created to keep this sort of thing from happening and to improve the patient’s experience. I’ll definitely be taking this situation back to them for review. My name is Haley, if you ever have any other dealings with this department, please ask for me. I want to be sure that you have a problem-free experience from here on out.” Maybe she was just paying me lip service, but I was satisfied with her response.
She went on to try and explain why things had transpired the way they had from her perspective. I’ll be honest, I wasn’t really listening, because by that point, I didn’t care. I’d said my piece and was ready to get this stupid test over with. I do recall her saying something about wanting to be thorough and make sure the radiologist had the correct test to read and to make sure there weren’t any mistakes. Now that I’m a few days out and have had time to think about it, that last statement is totally ludicrous. Clearly, their efforts for accuracy caused them to be inaccurate. I’m still wondering how they a) missed the order which I thought clearly stated “CT scan with and without contrast” and b) how they missed Kelly’s note stating that the test had already been verified as being the correct test. Was anyone ACTUALLY reading my chart? According to Haley, my case was outside of the norm and didn’t fit into the protocols, which is why some of the mistakes happened. Uh, sorry, that doesn’t give you a free pass to go on ahead and screw up. If you are married to having protocols, you should have one in place to deal with those cases that fall outside of the norm.
Anyway, so the air was cleared and we moved on with the test. During my entire diatribe, there was this other guy floating about the room busying himself doing who knows what. At this point, he was introduced to me as someone who was training. I smirked and said hello. Maybe, just maybe, he learned a lesson that will improve the care he provides to patients. Maybe.
The actual procedure was fairly unremarkable. Haley did an amazing job at inserting the IV. Seriously, zero pain, which was a first! The iodine injection was creepily weird. At first I felt a cool sensation in my veins, and then it was very warm, very quickly rushing through my arm and throughout my entire torso, making me feel like I’d peed my pants. They did the scan, took out the needle and I was on my way, but not before Haley said two more times that she wanted to be the one handling my care in her department from here on out.
All in all, I guess it turned out fine, thanks to me! I’ll find out the results of the scan tomorrow. I have no gut feelings on which way it’s going to go. I hope that it’s nothing, but am prepared for it to be something.
Pain April 21, 2015Posted by Judy in Musings.
Tags: breast cancer, ct scan, oncologist, pain
Pain is both a good thing and a bad thing. Pain is good, because it alerts you to the fact that something is amiss. Imagine if you didn’t feel pain when you touched something hot, you’d end up with all kinds of burns. Pain is one of the ways that your body tries to preserve itself. When you feel pain, you should at the very least note it and not ignore it. Pain is also bad, because it tells you that something is amiss, and I think we’d all prefer to not have things be amiss.
Pain is interesting beause while most of the time it can be said that the intensity of the pain is directly proportional to the amount of damage happening to your body, this is not always the case. I think it’s pretty clear that you’d be in incredible pain and in bad shape if you’d suffered 3rd degree burns, or had a giant cut on your body. I think you’ll also agree that a scraped knee or a small bruise are neither excruciating or life-threatening. But what about that persistent headache, or the ache in your side or in your breast, or the bone pain that turn out to be something quite terrible? That’s the kind of pain that is evil and tricky and confusing. Once you’ve been attacked by THAT kind of pain, then every pain is cause for alarm. Some might be tempted to call you a hypochondriac. As I told my doctor: The last time I had a little pain, it tried to kill me, so I think I’ve earned the right to be paranoid and alarmed!”
Today, I’m paranoid and alarmed, and have been for a little over a week. A week ago Saturday, I started feeling a pain at the base of my neck, a pain that seemed muscular in nature, so I figured I’d slept wrong. DH massaged it a few times and I put some topical medicine on it in an effort to make the pain go away. That evening, I moved my neck and the pain radiated down to the front of my throat. “Hmmmm . . . that’s weird”, I thought. A little while later, I swallowed, and the pain shot back to the base of my neck. Double weird! The next day, the pain continued, I noticed that my voice wasn’t working quite right, and I felt swelling on one side of my trachea, the same side that got grazed with radiation. I decided that this wasn’t a pain that should be ignored and I planned to call the med onc’s office first thing on Monday.
I really like my med oncologist, but it’s nigh unto impossible to get a hold of people in his office. It’s deplorable! I called and left a very brief and non-detailed message for the nurse shortly after 8am. When I hadn’t heard back by 3pm, I called again. The receptionist confirmed that the nurse had received the message and was going to talk to the doctor. Uh, wait a sec . . . .shouldn’t she talk to me FIRST to get more details BEFORE talking to the doc? Needless to say, I didn’t get a call back. So that evening, I sent a detailed message to the nurse via the online messaging system. That must’ve been enough to nudge them into action, as I got a call on Tuesday. Of course, the doctor wasn’t in that day, but the radiation oncologist was in. He was consulted and thought the pain shoudl be investigated. I felt good that he didn’t blow me off as being overly paranoid! The following day, Wednesday, saw me heading to the Cancer Center to see what was up. By this point, the pain was a little less painful than it had been on Saturday, and the swelling on my trachea had practically gone away, but it was still radiating back and forth between my throat and neck. The doctor didn’t feel anything, but thought it wise to have a CT scan of my cervical spine. Happily, the insurance company approved the scan and I got a call on Friday afternoon from the scheduler.
I’ve decided that nothing with healthcare can be simple. This was no exception. The radiology tech felt that the diagnosis code didn’t match the requested test. Further inquiry found that the code was breast cancer (duh) and the test a cervical spine scan (also, duh, since the pain is in my neck), and they really were both correct. This still wasn’t good enough for the tech, so s/he decided to consult with the radiologist on duty. THAT doctor also questioned the test, so he decided to call the rad onc to see if he was sure about that test, suggesting that an MRI might be a better choice. My cynical inner monologue went something like this, “Well of COURSE an MRI would be better, it’s leagues more expensive and pads your pocket better! And yes, it’s clear that you know MORE than the acutal oncologist! Riiiiight!” I’m sure it comes as no surprise that the oncologist said, “I ordered a CT scan, that’s the test that I want.” Hahahaha, oh to have been a fly on the wall during that conversation =) Anyway, so I’m having a scan done Thursday morning, and I follow-up with the rad oncologist the following Monday. I’d be lying if didn’t say that I was a little more than stressed out about this whole thing. Someone asked me if I’d considered the possibilities. Yes, the “Shoot, the cancer’s gone to my bones or brain” thought already muscled it’s way into my brain and has taken up residence there. A small part of me thinks it’s just a confluence of factors (kink in my neck, possible cold, sheer exhaustion) causing the pain. But the fact that pretty much nothing has changed in the past week – except that today I seem to have developed a cold – makes me feel like the confluence of factors has nothing to do with it. *sigh*
If this was my only health stressor, that would be stressful enough. Facing a potential hysterectomy and a potentially failed scar revision (blog posts coming with deets, probably more than you want to know!) make the stress exponentially greater! I try not to think about it and pretend all is well.
Waiting is always the worst.
Monday will hopefully bring answers, but that seems so very far away!
Night night, knockers! March 20, 2015Posted by Judy in Musings.
Tags: boobs, breast cancer, farewell, party
1 comment so far
A year ago today, I was sleepily and anxiously dragging myself to the hospital for a big, ol’ surgery. Although that wasn’t technically the beginning of my journey, it was what got the ball rolling. And although today is the one year anniversary of the start of the roll, that’s not what this post is about. One year and two days ago, these 35 women came together to celebrate and to say farewell with me.
Two weeks in advance, I posted this invite on Facebook.
The girls have had a good and productive life. Lately, they have gotten too feisty for their own good, so it’s time for them to move on to the big, bad pathology lab.
Join me as I say “Night night, knockers!” We’ll play a few silly games, eat some boob-themed food and have a girls night out.
Attire: Dressy (I don’t know about you, but I rarely get a chance to get dressed up, so I’m wearin’ something fancy!)
Please bring a themed-snack to share. (A small caveat: this a boob party, not a boob and sex party, let’s keep it clean-ish :D )
Also, if you see that I’ve inadvertently missed someone, please share the invite with them.
RSVP by Sunday, March 16
(For my out-of-town peeps, we can celebrate from afar.)
Whenever I send out invitations for anything, I’m always a nervous Nelly, worried that no-one is going to RSVP. This time was no different, but I was happily inundated with messages from people who could attend, and well-wishes from those who couldn’t. One of my out-of-town friends who couldn’t attend the party created an event, “Wear a Fancy Dress for Judy Day”, with the idea being that friends would dress up on the day and post pictures to the event page. It was lovely and beautiful and made me feel so wonderful to see so many great photos of people from all over dressing up. There were pictures of friends and their little ones dressed up. There were pictures of teachers with their entire classrooms dressed up. There were pictures of husbands and wives, both wearing dresses. There were pictures of people I didn’t even know, who had seen the even on other people’s walls. It was a thing of beauty. I spent the entire day with a silly grin on my face. And then in the evening, I got to hang out with friends, eat ridiculous food, and play even more ridiculous games.
The best game was “Pin the Foob” I’m sure you can guess how the game worked. Everyone created and decorated a foob (fake boob) for me. They were then blindfolded and had to pin it on a life-sized version of me. Suffice it to say, we laughed, and laughed, and then laughed some more.
All in all, the 18th of March was a truly fantastic day. It was the perfect way to prepare for the life-changing surgery I was about to endure. To all of the beautiful friends who supported me, came to the party, wore fancy dresses, and wore pearls the day of the surgery: thank you, thank you, thank you! I love you! Mwa!
The arrival of the yak March 17, 2015Posted by Judy in Musings.
Tags: breast cancer, compression, lymphedema
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It took a REALLY long time, but the yak from Mongolia finally arrived, bearing gifts for my arm! Silliness aside, it really did take forever for the compression sleeve to arrive. It was originally ordered in mid-October, and I got it about 2 weeks later. Sadly, it was too long, which meant I had lots of wrinkles . .. not good in a compression garment. I returned it and ordered the shorter one shortly before Thanksgiving. Fast forward THREE MONTHS, and the sleeve finally arrived. Totally ridic! Anyway, I used it for the first time on Sunday when I was raking up the leaves. It feels a little weird, makes my arm cool, but hopefully will keep lymphedema at bay.
And, a pic. Stylish, right? :D
Prevention February 2, 2015Posted by Judy in Musings.
Tags: breast cancer, compression, exercise, lymphedema
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***I’ve had this post ready to go since around Thanksgiving. I’ve been waiting on some compression garments to arrive so I could share pics. I think they must be getting brought over from Mongolia by yak, because 2 months later, they still aren’t here. Hence, I’m posting senza pics!****
Way back in March, I was debating which surgery was going to be the best option for me. You may recall that when a breast is removed, the standard of practice is to also remove all of the lymph nodes in the armpit. Doing so greatly increases the chance of getting lymphedema. (I’ll define lymphedma in a minute.) You may also recall that I opted to not have any more nodes removed and to go with axillary radiation instead. Now this is a case of me not being as informed as I should have been. While I knew that radiation could also cause lymphedema, I didn’t think about the fact that radiation would also cause my muscles to become stiff, thus limiting my mobility. My only thought was that radiation had a lower chance of causing lymphedema than surgery. If I had to do it over again, I think I might have had all of the nodes removed. Maybe. It’s water under the bridge now.
Anyway, so during radiation, I had to do these stretching exercises 3 times a day to make sure that the muscles didn’t get too shortened. I’m not exactly sure of the mechanism, but I believe the muscle fibers are effectively burned during radiation. If you think about what happens to your skin when it’s burned, it gets tighter, right? Same thing happens to any part of your body that gets radiation: the skin, the muscles and the lymphatic vessels. So in order to keep the muscles from shortening, I stretched them out every single day during radiation. For some reason, I thought I didn’t need to continue doing the stretches once the radiation ended. As it turns out, the radiation continues to affect your body long after the actual doses have ended. So now I have this one little muscle in my armpit that is very tight. I didn’t realize this until I met with the physical therapist in the lymphedema clinic. I guess this would be a good time to talk about lymphedema.
Lymphedema is a condition where your lymphatic system is unable to drain all of the excess fluid in the body due to a) the fact that many of the nodes have been removed or b) the fact that the lymphatic vessels have been damaged during radiation. This excess fluid then gets backed up in a person’s arm and causes the arm to be swollen, in some cases, extremely swollen. There is no cure for lymphedema. Once you have it, you’ll always have it. Fortunately, the condition can definitely be managed and you can get it under control. Even better news is that one can take steps to make sure they don’t get lymphedema. This is the reason I went to the lymphedema clinic, to learn preventative measures.
Her first step was to feel the area to see what was going on. When she was palpating the armpit area, I thought my skin was going to rip right open. Yikes! So painful! I was thinking that my skin was damaged from the radiation. (Remember the charred armpit?) Imagine my surprise when she said the pain came from a very tight muscle! I’m now doing stretching exercises every day to whip that muscle back into shape. It’s definitely better, but still not great! While she was palpating, she kept marveling at how great my skin looked. I sort of thought she was nuts, because to me, my skin has all sorts of issues. When she told me that many people come in after radiation with skin that looks reptilian and leather, I realized that it’s all about perspective. I’ll take my scarred and tanned skin over the leather version any day!
After palpating, she took very detailed measurements of both arms and fingers. She measured around each knuckle, both wrists, and then every few inches along my arm. The idea was to have a baseline of measurements so that in the future, if there is a suspicion of swelling, we would have a point of comparison.
Step three was to teach me how to massage the lymphatic system. This is not the same kind of massage that you get when your muscles are sore or to just feel good. It’s a very gentle, circular motion, with the idea being that you are helping the fluid move through the system. I do this massage 3ish times a week, or anytime I feel like I’ve worked my left arm too hard.
This leads me to step four, which was teaching me how to avoid getting lymphedema. Because the lymph system on my left side is now compromised, I have to be very careful when doing anything with that arm. So if I’m gardening, I for sure have to wear gloves to protect against nicks and cuts. I also need to ensure I don’t end up with a hang nail. Whenever you get a cut or any sort of breach, your lymph system has to work harder to filter out any of the germs that have entered in. Making an already taxed system work harder isn’t really part of the anti-lymphedema plan. If I’m going to be doing any motions that are repetitive (think exercising, raking, running, etc.) or strenuous (weight lifting, rowing, etc.), I have to wear a compression sleeve. It’s fits quite snugly and is a bit of a trick to get it on. When you do repetitive or strenuous motions, your body moves more blood volume through. Now that you are getting to be a pro at how the lymphatic system works, you can guess that this extra blood volume is a challenge for a diminished lymph system. This is where the sleeve comes in. The extra compression provides pressure from the outside, which then helps the fluid to move through as there is extra force being applied. Think of a balloon. You blow it up, then let the air out. Now, blow it up, but this time, squeeze the balloon as the air is going out. The air goes out more quickly and with more force, right? Same idea with the sleeve.
The biggest challenge for me has been sorting out what exercises I can and can’t do. Pushups, pec flies, planks and bench presses all require extra care. It’s hard to explain, but if you were inside my body, you’d definitely feel the difference between the left and right sides. The right side could plank all the live long day. Not so much with the left side …. it just feels weird. So I spend a fair amount of time modifying exercises for the left arm. I’m the crazy woman at the gym who has weight on one side of the bar but not the other. Eh, you do what you gotta do, right? Eventually, I hope to get the left side stronger so it can do more, but I have to build it up VERY slowly. And, if I happen to take a break, even for 3 or 4 days, I have to start over from the beginning. I guess that’s good motivation to keep on exercising!
So for the time being, I don’t have lymphedema, and I intend to keep it that way. Don’t be surprised when you see me wearing my stylin’ sleeve or if you see me standing with my left arm in a weird position. That’s just me stretching it out and doing my part to ward off the swelling!
Oh. my. goodness! January 15, 2015Posted by Judy in Musings.
Tags: breast cancer, DIEP flap, reconstruction
I’m so speechless right now I don’t even know how to start this post! I’m pretty strong in my resolve to not have reconstruction. But if there was ever a moment of doubt, this video would be enough to push me over the edge. It’s a video showing one of the reconstruction methods. It’s a long video, about 45 minutes long, and it’s graphic.
I couldn’t tear myself away.
I was horrified and fascinated all at once. Fascinated, because I never realized the crazy precision needed in surgery. Horrified, because I fully realized why people are in so much pain after surgery.
Just in case you don’t feel up to watching the video, here a brief synopsis. The reconstruction method is called DIEP flap reconstruction. In this method, a chunk of fat, skin and vessels is removed from the patient’s abdomen and is used to create a fake breast. I learned that if the surgeon finds the vasculature in the abdomen to be insufficient, they’ll switch the surgery to a TRAM flap, which means they would be taking a big chunk of the rectus abdominis muscle in addition to the skin, vessels and fat. Before placing the flap, they have to connect the flap vessels to the mammary vessels, which is done using some parts from one of the ribs, which is “sacrificed.” The final piece is the insertion of the flap. The patient spends one day in ICU and then five more days in the hospital.
Nope. That version of reconstruction is not happening here . . .. ever!
ETA: Fast forward to minute 43, which is where the DIEP flap is inserted. Madness, total madness!
Hyperactivity January 13, 2015Posted by Judy in Musings.
Tags: breast cancer, plastic surgery, radiation, scars, steroids
I had an appointment with a plastic surgeon last week, and she told me two things: “You’re so cute!” and “You’re my hero!” I had to laugh because I see myself as neither cute nor heroic, but hey, I’ll take it! Now some of you are still hung up on the words “plastic surgeon”, wondering why in the world I would need to have an appointment if reconstruction was off the table. it’s still off the table . . . .the options haven’t changed and I still think they are all terrible. Although, I CAN change my mind at any point in time: today, 2 years from now or even 25 years from now, for the moment, still no reconstruction. The purpose of the visit was to deal with my port scar, which is behaving badly.
The original scar, from when the port was placed, was a nice, thin line that didn’t really bother me. The new scar, from when the port was removed is a whole other story. About a month after the surgery, I noticed that the scar was painful, it looked quite pink and big, and I felt like there was something inside poking me. Here’s what it looks like:
I went to see the breast surgeon and the verdict was that the scar was behaving badly, it had hypertrophied. This means that for whatever reason, the collagen in that spot went bonkers and laid down waayyy too many fibers, which made the scar expand. The location of the scar is tricky because it’s in a place (probably the only place) where I have zero body fat, so it’s easy for scars in that area to have issues. His initial recommendation was to use a steroid cream, but after further thought, he decided that it would be better for me to see a plastic surgeon.
And so, 3 weeks later, I found myself sitting in the plastic surgeon’s office, peeling off my shirt to show her the scar. Her reaction was hilarious: “Oh! You didn’t do reconstruction?”
“Nope. I think my chest is ugly, but not enough to do anything about it”
“Well if you think it’s ugly, let me make it beautiful. You’ve come to the wrong place for no reconstruction.”
I thought to myself, “You’re barking up the wrong tree, lady. No way, no how are you going to change my mind!” But I humored her and we talked about why I didn’t do it (more surgeries = more fights for no intubation, potential complications, no good options that don’t affect singing). She eventually said, “Okay, so you really DON’T care.” Righto!
Lest you think she was an ogre trying to bully me, she wasn’t. She made it very clear that she would respect my decision, and that she would be available at any time to discuss options if I ever changed my mind. If I do, she’d be the surgeon I would use as I liked her as a person, and based on her explanations, she’s is equally as thorough and careful as the breast surgeon. So I’ll just tuck that into my back pocket. (As a little side note, she is the third medical professional to tell me that the mastectomy scars and radiated skin look “really good.” It’s a scar, so I think it’s unattractive, but since three people have told me otherwise
, maybe, in the grand scheme of mastectomy scar and radiated skin, mine is in good shape. And for that, I am grateful.)
But, back to the scar. She also recommended steroids, but she preferred injection rather than a topical application. I don’t fully understand the mechanism, but I can already see and feel a difference: the scar is no longer pink, and I haven’t gotten the stabbing pains in a few days, so that is good. I’ll have to do at least one more injection, possibly two. if the scar doesn’t get it’s act together after that, then the next option is to have a revision surgery which would involve cutting out the old scar and sealing it up again. “But what’s going to keep it from going all hypertrophic again?” you ask. Good question! She would inject steroids into the area immediately after the surgery to help keep the collagen at bay. I’m hoping it won’t come to that, though. To that end, I’m supposed to massage the scar 3 times a day for about 15 minutes. I can tell you right now, that doesn’t happen. It gets about 2-3 minutes in the shower, and a few quick massages here and there during the day, but it’s definitely not 45 minutes worth. Besides, about 98% of the time, the scar is covered up with a silicone patch that is supposed to help the collagen fibers lay down nice and smoothly. This is what is looks like:
See that price tag in the corner? Yep, it’s ridiculously expensive! Fortunately, it is reusable and my scar isn’t huge, so it should last me a long time. Anyway, massaging with the silicone patch on is tricky, so I don’t do it. I’m banking on the fact that having the patch on constantly will be more effective than massage. We’ll see!
The fun never ends! Keeps me on my toes, I guess =)