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.

One Foob Shy of a Full Rack

That’s all I have to say about that…and I had to modify my T-shirt, too.

T-Shirt Modification

T-Shirt Modification

Three breast surgeries have taken their toll on my girlish figure.  I’ve gone from breasts to tissue expanders to foobs, and now, to one foob and one…notfoob…(such are the hills and valleys of a breast cancer journey, after all).

Despite my odd aesthetic, I’m happy to report that the surgery went remarkably well, and I’m feeling great.  I finally had an anesthesiologist concoct the right mixture of meds to keep me from getting sick.  Seventh surgery’s a charm, apparently.  I arrived at 8:30, went through the usual pre-surgery routine, and in no time, I was wheeled off in the comfort of my recliner.  I tried to convince the nurse to pop a wheelie on the way to the OR, but she just laughed.  I think she thought I was kidding.

Settling into position for surgery this time, I made it clear that I did NOT want a repeat of the nerve damage the last surgery caused me.  Luckily, my anesthesiologist bent over backwards to make sure my arms were propped up to prevent over-extending the nerve.  Once she was sure I was comfortable, they duct-taped (okay, maybe it wasn’t duct tape…) my arms into position, and brought out the oxygen mask.  They instructed me to take deep breaths and imagine a beautiful beach scene.  The nurses asked me to take them all with me to the beach (this was one of those lovely sub-zero Wisconsin days), but I thought better of sharing the oxygen mask with them.  A sharp, burning pain into my IV got my attention, but they reminded me to continue with my deep breaths.  One, Two…Out Cold.

The next thing I remember is hearing Andy’s voice in the recovery room.  Recovery has been a breeze.  I woke up, gradually, without even a hint of queasiness.  I felt great, and by 1:00, I was on my way home to heal.  I had almost immediate relief from the pain, cording and swelling brought on by the infection, providing confirmation that I made the right decision to remove the implant.

By Tuesday, I was up and about, antsy to get out of the house and take a walk.  I didn’t even need the pain pills by Tuesday night.  Wednesday was the first day I was allowed to remove the dressing and take a shower.  I was anxious, and nervous, to see what this third breast surgery did to my body.  I was a bit taken aback at the concave profile of my right chest, but I’m taking it in stride.  It’s just surprising how little tissue there is left.  It feels like a small amount of skin sitting directly on hard ribs.  I still have the alloderm (donor skin tissue used with mastectomy to recreate the structure and contoured curve under the breast) in place from the original surgery, so there is a curve under what should be a breast, but now is a valley.  It will take some getting used to, but I’m healing extremely fast and feeling really good.

The last thing I still need to work on with my PT is the lymphedema that resulted from the infection, but all other limits have been lifted and I’m back on the road to strengthening.  I’m looking forward to the spring warm-up and some new shirts.  Maybe with ruffles…

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…



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.

Bump, Set, Spike, Crash!

So much for my goal of fewer doctor’s appointments in 2015. This week alone, I had six appointments. Next week, I have four. The good news is, the nerve damage in my left arm is healing, and the pain in my knee appears to be subsiding, too. I spent the weekend celebrating my birthday to the extreme, culminating in a great feast and bowling with the family. I mostly watched the bowling, though, due to increasing pain in my right arm. Little did I know, that pain would throw my whole week off.

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The rest of the week, I felt like a volleyball, being bumped, passed and spiked from doctor to doctor, on an emotional rollercoaster. It all started on Tuesday. As I returned to work with my physical therapist, I had a new concern for her. I was having worsening pain in my right arm that felt like axillary web syndrome (cording). I struggled with major cording for the first 6 months after my mastectomy, but hadn’t had a recurrence in months. She took one look at my skin and noticed a hot, red area on my right breast and said it looked like cellulitis, a bacterial skin infection. She didn’t want to work on my cording until a nurse took a look at me, so she called down to my surgical oncologist’s office and accompanied me right then and there to see the nurse. The nurse started asking me if I’d been in a hospital setting or could have been exposed to MRSA. A strange question – as we sat / in / a hospital setting.

The nurse was quite concerned and prescribed a strong course of antibiotics to try and fight the infection. She wanted me to see my medical oncologist right away the next day. After that unexpected detour, I was bounced back up for physical therapy to try to relieve some of the pain I was experiencing. While there, I learned more about how quickly these infections can turn serious, often landing women in the hospital, resulting in emergency surgery to remove the infected implant. I was thankful, and feeling hopeful since we caught it early.

Wednesday, I was sent back to the Vince Lombardi Cancer Center to have blood work done and meet with my medical oncologist. At that visit, I learned that the study drug I was taking was continuing to make my blood cell counts drop, opening me up to infection. She told me to hold off on the drug for a few weeks, to let my counts come back up so my body could fight the infection. She then told me she wanted the plastic surgeon to look me over. So, I called to schedule that visit for the next day.

I always seem to end up in tears in the plastic surgeon’s office. Thursday would be no different. He explained that the dermal fibrosis (damage to my skin) was only going to get worse and would leave me open to infections, which can become serious very quickly. I asked him what we could do about it, and he said, “you’re not going to like my answer to that question”. So I told him not to tell me, but, of course, he did. He said I would need another surgery. He explained two options: Either remove the implant and use an external prosthesis, or undergo a much more involved surgery to take skin, muscle and tissue from my back or abdomen to replace the damaged skin on my chest, requiring two nights in the hospital and another long recovery.

Luckily, Andy was with me at this appointment to ask further questions, because my head was spinning. The LAST thing I wanted was another surgery. We came up with a third option which involves giving the antibiotic a chance to clear up the infection, and letting my blood cell counts improve so that my immunity would be less compromised. The doctor was okay with this option, as long as I really watched closely and got to the hospital at the first sign of infection. Andy, always helpful, volunteered to keep a watchful eye on me…

That was that. Watch and see. Walking to the car, my fear of another surgery hit me, and I collapsed into Andy’s arms. He’s always been there to hold me up when I’ve had weak moments. He hugged me tight, not letting go, and reassured me that we would make it through this, too. I let him drive me home.

It’s a good thing he was driving, because I was lost in thought and teary-eyed, looking down at my phone when Andy yelled, “Oh Sh*t” and hit the brakes. That jolted me out of my preoccupation and I glanced up to see two cars racing up the on-ramp, parallel with us. One of the cars lost control and went airborne. It appeared that he was flying through the air right into our path, but thankfully, the wall between the highway and the on-ramp halted his flight, as he crashed explosively into it right next to us. I am thankful that wall kept us out of the crash. The crash did, however, snap me out of worrying about my health, temporarily.

I had a long night second guessing everything. Did I choose the right reconstruction surgery for me? Should I have waited longer to heal from radiation? Did the study drug compromise my immunity so much that I would have to have another surgery? What can I do now to avoid surgery? Slowly, the answers to these question will work themselves out.

Now it is Friday, and I have come full circle, back to my physical therapist. She reassured me that my skin was actually in pretty good shape and the infection seemed to be under control. She thought that I would get past this bump in the road without requiring surgery. I hope she is right, because I have a lot of things I want to do this year, and none of them include room for more slow, painful recovery.

I Endured Surgery and All I Got was this Lousy T-shirt

I Endured Surgery and All I Got was this Lousy T-shirt

I’m not quite sure what I was expecting when I returned to the plastic surgeon’s office a week after reconstruction surgery. Completely uncomfortable, off the pain pills, I was more than ready to get the dressings, tubes and stitches out and see what my new look was going to be. Since the time of my bilateral mastectomy, it’s been a running joke that I would soon be trading in the awkward tissue expanders for new “perky Bs” that would suit my athletic lifestyle. I was excited all week to see how they turned out, so I was completely unprepared for my actual reaction to the first look at my chest.

The doctor made a point to say, “now, don’t judge based on your first look at things”. There is still the healing process to go through, and I was very bruised and swollen. But it’s easier said than done. I didn’t like what I saw. The area of damaged skin that had to be removed made the right scar painfully tight, in turn pulling and deforming the shape of the right breast. Radiation does so much damage to the area that this can be a common problem. The procedure included fat grafting, where they take fat from my stomach to fill in the areas around the implants to “soften the look”. The end result made the right side even more lumpy and misshaped, to the extent that the doctor said, “it may need more work.” After the rough week I just had, the last thing I want is more surgery.

On top of the sleeplessness, pain, and disappointment with my new look, there is the much more disconcerting problem of my left arm. It is still numb, extremely weak and I am not able to control my movements very well. I now am being sent to a neurologist to see what went wrong. In the meantime, I am not letting anyone draw blood from my arms (since I fear that the IV might have had something to do with the nerve damage), which may cause me to be kicked out of the clinical trial that I am in for a very promising drug used with stage 4 breast cancers to decrease rates of recurrence. Hopefully, I can get everything checked out before I lose my spot in the study.

Once again, I was hoping to get out of town this winter break, but now I have one kid on the couch with a fever of 102, an appointment tomorrow to find out the results of the MRI on my knee (which had to be postponed since September because of the metal in the tissue expanders), and appointments next week with the neurologist and surgeon. And today, of course, I woke up with a bad sore throat….

Oh, I almost forgot – about that shirt I mentioned in the title. I bought it months ago with the intention of wearing it home after reconstruction. Unfortunately, one week after surgery, I still was not agile enough to actually put the shirt on…At that point, I was in tears anyway and not feeling lighthearted enough for self-deprecating humor. The next few days were rough.

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Happy Holidays! I think I’ll sleep until 2015!

Nip, Tuck

Nip, Tuck

The last words I ever expected to cross my lips were “I just had plastic surgery”. But there it is. I just had plastic surgery. I am not a vain person, I don’t wear make-up or fuss with my hair or clothes or my appearance in general. I had considered not doing reconstruction at all, but I am just self-conscious enough to want something there, so I can change clothes in the locker room without embarrassment. Yet, for me this surgery marks the end of this journey battling cancer, and somewhat of a return to normal.

I arrived at 11:00 on Monday for pre-surgery preparations. Surgery was scheduled for 12:30, but the surgeon was behind schedule so I had extra time to sit, hungry, craving my morning coffee, and worrying about the surgery. My boyfriend, always there to cheer me up, put adorable kitten videos on his phone to help pass the time. It worked, and before long, I was all ready to be rolled off to the operating room.

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Because I had lymph nodes removed on both sides, I am not supposed to have IVs or blood pressure cuffs on my arms. I convinced them to do the blood pressure on my leg, but they would not do the IV in my foot, so I had an IV on the left side, which had fewer nodes involved. It hurt like crazy going in because my chemo-weakened vein tried to run and hide. She eventually got the IV in place, and pre-surgery meds started flowing. As with every surgery, I begged the anesthesiologist not to make me sick. They always give me the works to prevent nausea. Antacids, motion sickness patches, anti-nausea meds, but it never seems to work. I always end up sick to my stomach. So that happened. Again.

The plastic surgeon checked in on me and drew lines all over my chest and stomach while I could still stand up. Apparently, they don’t want to make the lines after you are unconscious, flat on your back. Once that was done, they wheeled me off to the operating room right in my recliner. Entering the OR, I said, “I see the party has started without me, and just as I expected, brightly lit and cold”. There was some lighthearted joking around, then they wanted me to get as comfortable as I could on the operating table before they completely knocked me out. I felt relatively comfortable, with my arms straight out at my sides, airplane-like, so the oxygen mask was placed over my nose and mouth with instructions to take deep breaths. Nighty night….

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Next thing I remember, vaguely, was coming to gradually in the recovery room. I heard Andy’s voice and the nurse telling me something, though I don’t remember any of it. I noticed at that time that my left hand had fallen asleep and was tingly. Apparently, they got me up and dressed. It was late in the day and everyone was anxious to get home. I was the last one on the floor for the day. I was becoming more and more alert, and I wanted to go home. That’s when the nausea hit. I got sick, which made me feel better, but then they took away my crackers.

Feeling better, they got me up to walk to the bathroom. I felt weak and lightheaded, but managed ok. Until I had to try to pull my pants up. My sleeping left arm was not working. This made me panic. I feared the worst-they paralyzed my arm. I would never have traded use of my arm for new breasts. A future without the use of my arm horrified me. I have big plans for my future, and most of them involve physical labor (rehabbing houses) and motorcycles, and a generally active and adventurous lifestyle. What would I do with one arm? And that was my “good” arm, that hadn’t endured multiple surgeries.

This new problem delayed everyone’s departure for the day, but eventually, I was wheeled out to the car and sent on my way to recover at home. I managed to sleep fairly well that night and most of the next day. I did speak to the surgeon and the anesthesiologist about my arm, and they reassured me that it is temporary and I should expect to regain use of my arm over the next two weeks. The specialist they spoke with says it happens sometimes, when the arms are stretched out for an extended time. They think the nerve was over-extended or pinched due to swelling. Maybe the IV in my arm also caused the problem. So, I just have to wait and see. If it isn’t better in two weeks, I’ll have to see a specialist. Now, it is three days later and my arm is still numb and tingly, but I am regaining some movement, which is reassuring.

Besides the arm issue and the nausea, the surgery went well. There was a bit of skin that was so damaged from radiation that it had to be removed, though, so the scar may be bigger than I thought. I am tightly wrapped in gauze, with a tight girdle-like piece wrapped around my abdomen. I have to keep this all wrapped up until next Tuesday, when the plastic surgeon will remove the dressings, and expose the end result for me to see.

Now What?

I realize that it has been nearly two months since I updated my blog. Don’t worry. I am still here. I still have a lot on my mind, and have been meaning to write, but the urgency to write which I felt before has let up some. In the thick of things this past year, I felt a strong pull to put my thoughts to paper. Writing was the only way to sort out the complex jumble of thoughts and fears, and dig for some sense of peace with what I was going through. Now, as I continue to move forward, I don’t feel the same pressing sense of urgency to put my thoughts to paper, so maybe you’ll hear less from me. Maybe….

The completion of radiation in the end of September marked the end of active treatment against cancer for me. For 10 months, this vigorous battle dominated nearly every aspect of my life. The abrupt change from constant doctor’s appointments, major side effects, and a underlying, ever-present focus on whipping cancer, to a return to… “normal” life, left me thinking, “now what?” Where do I go from here? So much has changed.

The important things in life are that much more important now. The unimportant things in life are that much more unimportant now. Facing fears, and pain, and setbacks seems to be a regular part of every day, yet I have new goals. Some are previous goals that have been neglected. Some are new goals. Life is too precious, and there are no guarantees that I’ll be around long enough, to put off the hopes and dreams I have for my life. What all of this means, I am not sure. But I am excited to find out. Excited to move forward.

Though I sometimes feel manic excitement to jump head first into this new chapter, waste not a single moment, I also realize that it will take time. I don’t have the strength or the energy that I used to have. I see glimpses of my old strength at times, but only glimpses. It seems that I can’t complete the tasks that I set for myself in the time I think I should be able to complete them. It frustrates me. I don’t have time for the patience of my younger self. I know that I need to learn, for now, to take on less, slow down, do things at a reasonable pace. Balance.

I have one more major hurdle to clear on this journey. Two weeks from today, I will be undergoing reconstruction surgery, along with the removal of my chemo port. I look forward to getting it done, or, rather, to getting it over with. In fact, I pushed the doctor to let me do it before the end of the year because I want this chapter to close with the end of 2014.  I am not looking forward to another surgery, another recovery, another pause from the things I want to be able to do.  I can say one thing with certainty, though – look out 2015! This New Year has new meaning and I am going to come on strong!