Funky Lymphedema

Funky Lymphedema

Lymphedema is… I don’t even know what to call it…so, funky lymphedema it is. In a nutshell, it is a painful accumulation of fluid in an extremity, and it is incurable. You may recall hearing about it in the news recently, when Kathy Bates became an advocate for people suffering with lymphedema. When I first heard about lymphedema early on in this journey, it was one of the things I actually feared most. The symptoms of lymphedema include painful swelling, skin changes, heaviness, and fatigue in the affected limb. My fear was that this condition would prevent me from doing the things that I love most. Despite my fears, I started experiencing the symptoms of lymphedema back in January, as a result of the skin infection (cellulitis) I developed in the area of my surgical scar.

There are a number of reasons why women battling breast cancer develop lymphedema. I have a combination of all of the causes, so, to say that I was at high risk for developing lymphedema is an understatement. It can result from mastectomy surgery, especially if lymph nodes are removed. Radiation targeted at the remaining nodes does further damage to the lymphatic system. Finally, infection to the area with the compromised lymphatic system can be very difficult to clear from the affected extremity. Naturally, having ticked all of these conditions off my list, I was primed to develop lymphedema.

The purpose of the lymph nodes is to filter proteins and fluids from the lymphatic system. When the damaged (or absent) lymph nodes can’t keep up with this function, the result is fluid buildup in the extremity, in my case, my right arm. My arm was slowly puffing up like a water balloon. My kids found it entertaining to press on my arm and watch the indentation of their fingerprints linger for several minutes. An oddity, yes, but I was not amused. Mainly because simply lifting my arm left me feeling like I had done a hundred reps with heavy weights. And the pain of axillary web syndrome also returned to my arm.

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The only way to reduce the swelling has involved ongoing physical therapy over the past two months to try to reduce the swelling and return my arm to its normal size and strength, as well as daily wrapping to prevent additional fluid from accumulating. I was doing pretty well. With the help of the lymphapress (think of a sleeve with about 8 air chambers that fill with air in sequence to squeeze the excess fluid into my veins where it can be carried out of my arm), my arm was returning to normal, and feeling better.

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With months of physical therapy, my arm was almost back to normal, when a miniscule scratch turned into full blown cellulitis. I caught it early and was put right back on the antibiotics. After a 10 day course of antibiotics, it cleared up, but as soon as I went off the antibiotics, I developed another area of cellulitis on my forearm, completely out of the blue. So, back on antibiotics. Once again, after my latest surgery, I am facing more pain and swelling in my arm.

Sadly, there is no cure for lymphedema. I will forever have to protect my arm. I have to avoid scratches, bites, blisters, sunburn, etc. to my arms. I will forever have to wear a compression garment, wrap my arm when swelling begins, and carry antibiotics. I will forever have to face questions such as, “what did you do to your arm?” I’m still working out how to answer those questions. I didn’t DO anything to my arm. On second thought, maybe I did. It’s the small sacrifice I made to rid cancer from my body.

What I have learned in the last few months trying to control the lymphedema, is that I don’t have to fear it. I will not allow it to prevent me from doing to things that I love. It’s just one more reminder that I need to remain diligent and make my health a primary focus. I need to work a little harder now to grow strong, and implement healthier choices into my life. I feel assured that the more active and stronger I become, the easier it will be to control the lymphedema.

Deconstructing Sue

Last night was a sleepless night with pre-surgery anxiety.  I am 100% sure that the surgery to remove the implant and damaged skin, scheduled for tomorrow, is absolutely the right decision.  Yet I spent the night, tossing and turning, deconstructing every aspect of reconstruction and deconstruction.  Part of me wishes that I had  originally chosen not to reconstruct at all, saving myself a lot of pain, surgery, and struggle over the past year.  On the other hand, I’m not convinced that I want to spend the rest of my (long) life disfigured in that way.  Seems a petty thing to worry about after all I’ve been through this past year.

Lympha Press

My arm in a Lympha Press

What I do know, is that the implant has to go.  Timing is everything, and, sadly, I may have postponed this surgery a week too long.  This week was a struggle with searing pain in my chest and back and lymphedema in my right arm.  My skin is unable to heal itself, and I’m on my third course of antibiotics to keep the infection in check.  I am counting the minutes until I can get the surgery over with, and allow myself to heal.  I wanted to be sure before doing anything so I wouldn’t second guess my decision.  My PT said, “you can second guess yourself all you want, but it won’t do any good.  You may have second guessed a decision to do the surgery earlier, too”.  She has a valid point.  All I can do is choose options and stick with them.

Again, timing is everything, and happily, I got to spend last weekend (Valentine’s Day) in Chicago with Andy at the motorcycle show and pizza meet-up with friends.  (As my good friend Mary said, “combining romance and motorcycles – brilliant!”).  Absolutely!  We had so much fun at the motorcycle show that I forgot all about the troubles I was having.  It was worth postponing everything so I could fit that rejuvenating road trip in.  I may have found my next motorcycle, too…

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Weeeeee-Strom

Ironically, tomorrow’s surgery (February 23rd, 2015) is one day short of last year’s mastectomy (February 24th, 2014), marking my cancer-free-versary and, with it, a lot of emotion and difficult memories.  It took a year to (not quite fully) recover from the pain of the mastectomy, suffering the side effects of axillary web syndrome, radiation fibrosis, and lymphedema, along with the painful process of filling the tissue expanders to stretch my skin and muscle to make room for an implant.  Then another surgery to exchange the tissue expander for the implant, and now another surgery to undo all that, removing the implant and damaged skin to be left with a flat chest wall.  It’s way too much trouble, really, just to have the appearance of breasts.

So, even though I have a fear of facing another surgery tomorrow, another recovery, and the disappointing setback of losing another “breast” (or foob, as those of us with fake boobs refer to them) I remind myself, as I approach the one year mark, that the important thing is that the cancer is gone.  All the rest of it is just hurdles to clear on the road to recovery.

Cancerversary

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One year ago today, I heard the words, “you have breast cancer”, forever changing my life and challenging my limits over the course of the year. I’ll never forget that day. My time on this planet became more precious that day, and my future became more fragile. Looking back brings a flood of emotion as I recall the experience of that moment in time, now altered by the lens of time and new perspective. I’ll count this year, and every year that passes, as progress towards the goal of so many survivors – stay on the right side of the percentages to become a 5-year survivor, a 10-year survivor, and on and on.

Amongst cancer survivors, this date is known as a Cancerversary. There is some debate regarding which date truly represents a Cancerversary. Some choose the day they were diagnosed. Others choose the day surgery removed the tumor and they became cancer-free. Others count their anniversary as the day they complete all active treatment. For me, there are several dates that will forever stand as milestones on this journey. I mark January 31st as my Cancerversary, the day I learned of my diagnosis, a day I will never forget. I consider February 24th as my Cancer-Free Versary, the day I became cancer free. Other dates also are permanently etched into my mind; the first day of chemo, last day of chemo, end of radiation and active treatment, reconstruction surgery.

The details from that day one year ago are as clear today as they were then. I left the doctor’s office knowing that it was not going to be good news when the doctor called me with the results of the biopsy. Too much about the appointment pointed to bad news. I was there for nearly three hours, getting images and more images; a second look, a third look. The way the doctor shook my hand when he came in the room was the way you shake hands at a funeral, with a deep empathy in his eyes. He held the nurse back from her lunch break so that we could do the biopsy right then and there, rather than scheduling for another day. As we were finishing up, the doctor said, “It doesn’t look good, but I’ve been wrong before”. Not a terribly reassuring statement, I left the appointment knowing what I had already suspected.

I expected the doctor’s call late in the afternoon, so Andy took me out to lunch to pass the time and keep my mind busy with something else. The doctor called earlier than I expected, so I barely heard the words over the din of the lunch crowd. His words confirmed the cancer. I shouldn’t have been shocked, I already knew in my gut what the doctor was going to say, but actually hearing it verbalized was a tough blow. I was thankful that Andy was there to hug me and reassure me, as he would come to do frequently over the course of the year. On the ride home, another call came in, this time from my primary care physician, with her referral to a breast surgeon, who she swore she would go to had it been her diagnosis. And, thus began the wild ride of tests, surgeries, and cancer treatment that would dominate my life for a year.

One year has passed. So much has changed. Reflecting back on why it seemed to be such a busy year, I started counting up Doctor’s appointment, which then lead me to review medicals bills. Then, for some reason, those credit card commercials with the “Priceless” theme popped into my head, (some things, money can’t buy. For everything else…).

Cancer Treatment = One year, 177 appointments, 3 hospitals, 2 surgeries, chemotherapy, radiation, hormone therapy
Medical Bills = $646,474 and counting (thank God for good health insurance)
Time lost to sickness, side effects, and recovery = 1 year
Being a Cancer Survivor = Priceless