Debbie Downer, aka my lymphedema therapist

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So, I had my lymphedema eval. And it did not go as I had hoped it would. My expectation would be that she would teach me some self massage/drainage techniques to use, perhaps order a compression sleeve that I would wear during certain times that are high risk for swelling (long travel, exercise, etc). Instead, she recommended 3 times a week this week and 3 times next week of coming in to see her for manual lymph drainage, which is basically very light pressure point massage in areas of lymph nodes to get the whole system moving more appropriately, along with wrapping. She applied the wrap yesterday, and by the end of the week will teach me to do it myself, so that I can continue over the weekends when I don’t see her. This picture, by the way, shows what she called a “light wrapping” to start me off with. LIGHT.

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I have to keep it on 24/7, with the exception of removing it immediately before my appt with her so that she can measure the arm compared to my other arm, and perform the massage. It’s been just over 24 hours, and let me tell you, I’m loving life right now. Typing at work is interesting. So is cooking. Washing my hands. Doing basically anything. At least it’s not my dominant hand, but still. I was actually measuring a borderline difference between my two arms, as far as whether or not she would even recommend this “intense” treatment period or not at this stage. Since radiation also increases risk of lymphedema, and early treatment is so important in preventing it from becoming worse, we decided to go ahead with it. It will be about 2 weeks with the wrapping, and then I’ll “downgrade” to a compression sleeve that I’ll wear all day, every day, for an indeterminate amount of time. My very optimistic (not at all) PT tells me, this is just life now. That sometimes bodies reset after active cancer treatment is over, and manage the lymphedema well, but we won’t know that now, and the recommendations are that your best chance for preventing it from worsening is to wear a sleeve during the day. She went on to say, “Some women decide they don’t want to do that, and then they are just putting themselves at risk”. After talking with many women in the Facebook support group I’m a part of, it seems that almost nobody has to do this full time forever. They get it under control in a matter of weeks to a few months, then just wear the sleeve during high risk activity or if they notice a period of swelling happening. Occasionally having to revert back to the wrapping for a short time to manage it well again. If she continues to sing the same tune after this first phase of treatment has ended, I’ll seek out a second opinion. Yesterday, after she had me all wrapped up and was talking about how we’ll proceed, I just started crying. And in her ever positive and compassionate ways, she just kept talking, didn’t even offer me a tissue. Shout out to the awesome bedside manner, ma’am.

My last chemo treatment is on Monday. I have been looking forward to this for a very long time, but my excitement is now somewhat tempered by this lymphedema nonsense. I’m having a really hard time coping with it, beyond what I would have expected, and I think it’s that it’s just one more thing. And one more LIFELONG thing. Even if it goes away, and I am told that yes, I don’t have to wear a sleeve constantly, it’s something that I will forever need to be vigilant about, and will rear it’s head on and off for the rest of my life. Which….just sucks. It’s one more reminder that this will never be over. I think some friends and family are looking forward to treatment being done, excited for me, that this nightmare will pass and I can get back to normal life. But, unfortunately, that’s just not reality for people who go through this. Yes, treatment ends, and life gets better. But it’s not over. There are surgical results, left over side effects from the treatment, potential complications from that treatment, and the ever present fear of recurrence. There’s no all clear with breast cancer, no guarantees. You just have to do what you can and hope for the best, and that’s a hard pill to swallow. This whole “journey” is like death from a thousand paper cuts. It’s hard not to feel like things are constantly being piled onto the giant crap pile of stuff to deal with. One thing ends (chemo), another starts (lymphedema). I’m trying to hang in there and roll with it, but I can’t lie….this week bites.
If if anyone wants to read more info about lymphedema, this is a pretty good resource:  http://www.breastcancer.org/treatment/lymphedema/ask_expert/2008_04

 

Stay Puft Marshmallow Arm

It’s been a few since I’ve checked in. Things are plugging along over here. When people ask how I am, I say that overall I’m doing great. Which is true, because I’m comparing things to post surgery recovery, or terrible chemo side effects….but when I really think about it, while I do feel better than I did then, I’m certainly not without side effects now. I find myself telling my oncologist at appointments, “Oh, I’m doing great. Well, I do have this…and this…..and this…….oh, and this…..”. It just serves to remind me that this is going to be a looooong process. The “better” chemo still comes with these side effects (for me, anyways, there are many more than I’ve been lucky enough to not encounter): some neuropathy/numbness/cold intolerance in my hands and feet, stomach upset over the same 2 days every week following infusions, fatigue, eye irritation, rash/breakouts on my face (which is super cool, anything to make me feel more attractive right now), muscle aches/bone pain, and taste changes. In addition to that, having the tissue expanders is uncomfortable all the time, to varying degrees. This week, I did something to tweak one of my pec muscles (which lie over the expanders), so it kept seizing up on me. Not much to do for it other than wait for it to calm down. As I was told, those muscles aren’t intended to have anything shoved under them, so they will essentially freak out now and then as they stretch and get used to it.

In the department of gifts from cancer that will keep on giving, I’ve been doing physical therapy for something that developed as a result of having tons of lymph nodes on the left side yanked unceremoniously out of my body. It’s called “cording”, and is a result of lymphatic tissue that gets inflamed/irritated as a result of messing with those nodes, and attaches itself to the skin, creating the sensation of a cord running down the arm. It makes it feel like a fishing line pulled tight, so when you extend your arm fully, you can’t quite get full range of motion. Mine ran from my armpit all the way down into my thumb. The good news is that this is resolved fairly quickly with therapy, and doesn’t tend to happen again once it goes away. Mine is probably 90% gone at this point. Unfortunately, during the therapy, we noticed that I’m having some very mild swelling in my left hand. So, I’m waiting to get an appointment soon with a different physical therapist that specializes in lymphedema. This is a chronic condition, and again, having lymph nodes removed can increase risk of developing it. So can radiation, which is on the way for me. It’s something that those of us who have had a mastectomy with nodes removed have to monitor….forever. It can develop soon after surgery, or 20 years later. Treatment for it has come a long way. It used to be (and still can be, if not treated adequately) where you would have extreme swelling in one arm, where it was grossly disproportionate to the other arm, and is quite painful and limiting. Now, they treat early and focus on prevention. I need to be cautious of cuts on my left arm/hand, because infection can more easily enter and cause swelling. So that means gloves during gardening, covering with antibacterial meds and bandaids if anything happens, nothing constricting on that side (no blood pressure cuffs, no injections, no tight watches/jewelry), limit time that I’m carrying heavy bags with that arm, etc.  When I meet with the physical therapist, I’ll likely learn some self-massage techniques for lymphatic drainage to help when I notice the swelling, and get a sleeve that I’ll wear during periods of exacerbation, during exercise, and any time I fly. It’s a huge bummer that it’s something else to manage, but everything about this diagnosis is a bummer.

All of this said……things could certainly be worse. I don’t know if it’s just that I’ve had time to adjust, or (more likely) that it’s something that will just continue to wax and wane, but my anxiety about cancer and it returning has improved recently.  I feel confident in my treatment plan, in that we are throwing everything possible at it. I’m doing allllll the things. So, there’s not the feeling of, “Should I have done the full mastectomy/the chemo/the radiation” because……done. I read a recent statistic on the Komen website that said the sneaky cancer cells make it to the lymph nodes, risk of recurrence is about 23%, and if you have radiation, it goes down to about 6%. Seeing as the average woman has a 12% risk of breast cancer, I’ll take that 6%. This is slightly misleading, in that in only speaks to the chance of a local recurrence, and not the odds of metastasis to other areas…..that’s either going to happen or it’s not, and there’s some research to suggest that even in early stage breast cancer, these cells escape early on and go undetected in bones/organs for some time until they start to grow again. But in order to stay sane, I can’t focus on that, I’ll zero in on that 6% instead.

This past Monday, as I drove to chemo (only THREE left to go!), it was a gorgeous day, my windows were down, and I was singing to whatever was on the radio (my apologies to anyone whose ears I assaulted). I thought about what a long way I have come since that day in November that I received this diagnosis. Or even the first handful of times I drove to chemo, crying, or spiraling into anxiety….and now it’s like another errand I have to run. I wouldn’t have pictured it this way, that’s for sure. It goes back to a previous post, where I talked about people being resilient. We really do adjust to what we have to adjust to. Life goes on. And, for me, it’s a good life. Yesterday morning, I went downtown to the Columbus Arts Festival, and walked around, enjoying the day and the scenery, and it was just what I needed. Came home and had lunch with my best guys, and then spent the evening at the local pool cooling off. I definitely appreciated the good things I have yesterday, and will try to continue to do so. Home stretch of treatment, people. I got this.

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