Perfect 10

Okay, the image of Bo Derek from the movie “10” has nothing to do with this blog post, but it came to mind when I wrote the title, and I thought it was humorous, so there she is…. On a more serious note, this post is about re-defining what my own “perfect 10” means after the last few years and, of course, after turning 50 (loud and proud!!!) I’m also rounding out my surgery count at a perfect 10.

I didn’t learn from my last blog post, because the first big thing I’m tackling on my “50 after 50 List”, exactly one week after my 50th birthday, is surgery number TEN – check. I’m aiming for a perfect 10. I’m quietly hoping that the nice, round number 10 will symbolize my last time under the knife, but I’m not holding my breath. If I’ve learned anything in my 50 years on planet earth, it’s that life does not fit into the neat little, predictable boxes we may envision for ourselves. I won’t waste my energy worrying about how many more surgeries I might have in my future. I’m going to focus all my energy on the present surgery.

January 26th will be  surgery number ten. Guess what? It’s not the knee surgery you might have anticipated due to my recent accident, rather I’m back at it with the plastic surgeon in Chicago. A lot of people have asked me what this surgery involves. They say, “I thought you did that surgery last year.” It’s complicated, so let me try my best to clarify why I am traveling to Chicago once again for surgery – Andy and I are calling it a “destination surgery”. I know, it is exotic. We did the same thing last January, and Andy still doesn’t let me count it as a honeymoon.

I’ve had a year to recover from Phase One. I’m not gonna lie to you- I’m still not fully recovered. It was one of the tougher ones, and I’m a bit of a connoisseur. My recovery goal was to build my strength back up and get as close to “normal” as possible before Phase Two. My method for recovery was volunteering with Team Phoenix, and completing the Tri-Ing for Children’s Triathlon, and (almost) the J-Hawk Late Bird. As you know, I never made it to the Late Bird, thanks to my rendezvous with a Jeep.

By September, I was feeling strong and setting my sights on a late fall surgery, leaving time to come back in 2018 for the Madison IronMan. My surgeon in Chicago knew that I wanted to have surgery after the September 24th triathlon. Ironically, they called me just after my accident with an opening – October 13th…. With the Honor Flight on October 14th, there was no way I was going to take that date. Anyway, I needed more time to let my knee and bruising heal before going through more trauma (I’m guessing the fat grafting won’t be coming from my thigh with this bruising). It would have to wait. Next available date would be January 26th. I’m so good at hitting “new year, new deductible….

ouch!

Now, I am more than ready to get on with it. So, back to what this surgery is all about. This is Phase Two DIEP Flap breast reconstruction. If you look back at my post called “Ninth One’s a Doozy”, you will get a little more background on Phase One of this process, which I completed a year ago. In a nutshell, Phase One is the major “relocating” of tissue from my abdomen to my chest to reconstruct a breast post-mastectomy. That surgery included a Lymph Node Transfer in an effort to control my Lymphedema. This is the reason I am traveling to Chicago for surgery. Very few surgeons do this surgery.

Phase Two involves sculpting and tweaking to try to make my DIEP flap match my other implant side. I’m not going for a perfect 10. I am hoping to be done with the awkward 4.5 I’ve been since the double mastectomy, though. People “in the know” will recognize terms such as “Ken Doll”, “Dog Ears”, and “Fat Necrosis”. These are some of the unsightly, and painful issues that can be fixed in phase two. For more on that, go ask Dr Google (actually, don’t! I just did a google images search, and it ain’t pretty). The fat necrosis is the worst. It causes me pain every day. The other stuff is just embarrassing in a locker room.

Phase 2 will also involve a lymphovenous bypass in my arm as a further attempt to alleviate the swelling caused by my lymphedema. It involves micro surgery in my arm to re-route the lymph vessels into the veins, so that the veins can carry the excess lymph fluid out of my arm. Sounds pretty cool, in theory. I’ll let you know how it feels next week.

I’ve said it before and I’ll say it again, “wish me luck….no….wish my surgeon luck-I’ll be sleeping.”

New Car Smell

Imagine you really need a new car. You save your money. You do all the research ahead of time, and find the best dealer. You pick out just the car you need and ask the dealer how much it costs. The dealer tells you that he can’t tell you a cost on the car until after you sign the deal. All the research you do turns up a huge range of prices that the car might cost you, rendering that information useless. Imagine, too, that your “savings” for the car was being held by a company. The company tells you that after you buy the car, they will let you know if they are going to let you have the money for the car. Would you still buy the car?

I’ve been a consumer for quite some time. I always do my research and get my costs upfront in the decision making process. Then I can negotiate and decide whether the cost is worth it. The above scenario sounds absurd, doesn’t it? Most of you would probably walk away from that deal, right? But that is how the scenario plays out in the medical field. There is no transparency in the pricing of medical services. First, patients get the services they need and then deal with the bills (and the insurance companies) after the fact.

Months before my surgery, I was back and forth on the phone between the hospital and my insurance company trying to ensure that this surgery would be covered. Surgery was even delayed while waiting for pre-authorization from the insurance company. I also wanted an estimated cost so I knew what I would be facing if I had to pay a portion of the costs out of my own pocket. I was mostly concerned about the lymph node transfer, which is still seen as “experimental” in the US.

The surgeon himself was confident that the breast reconstruction would be covered. He also told me that the lymph node transfer was most likely to be covered in conjunction with the reconstruction surgery, as opposed to if we did just Lymph Node Transfer. The Women’s Health and Cancer Rights Act of 1998 requires all group health plans that pay for mastectomy to also cover prostheses and reconstructive procedures. I never had any trouble getting coverage for my mastectomy or other reconstructive surgeries, so I was confident my insurance would cover this procedure. I had to trust that all would work out (which is why I pay that huge monthly health insurance premium) and I scheduled the surgery.

However, neither the hospital nor the insurance company would give me an estimated cost of the surgery and hospital stay. Neither would confirm whether the surgery was going to be covered by my insurance or not. I had the hospital tell me the billing codes, but the insurance company still wouldn’t tell me anything until after a claim is submitted. The insurance company pointed me to their online “cost calculator” so I could get an idea of the cost. The range was so large, it was not helpful. The hospital simply said that they would “go to bat for me” if the insurance company denied coverage (after the surgery). This was all the information anyone would give me on cost and coverage before I made the decision to proceed with the surgery.

Before the hospital gown hit the bottom of the soiled linens hamper, the ink was dry on the letter from the insurance company. The ink was dry on lines stating “we have determined that the service is not medically necessary,” and “We did not receive any other medical information to make a decision about your admission. We do not have your test results. We do not have reports about your care. You were admitted 01/06/2017. Your admission is not covered.”

The letter was dated 01/09/2017. It was stamped before I was discharged from the hospital, and waiting at my house when I returned home from the hospital. I’ve never seen an insurance company work that fast. It certainly takes longer to process claims and PAY bills. Why would they subject someone to the anxiety and stress of facing medical bankruptcy before they even have all the information from the hospital? I bawled when I read this letter. Truthfully, though, I am not worried (yet.) Once they receive the information from the hospital (and my appeal to their decision to deny me coverage), I feel that they will have to cover this surgery. What frustrates me is the fact that I have to appeal and fight the insurance company. I’m upset that they didn’t wait until all the information was gather from the hospital before sending me a denial. “We do not have results,” “we do not have reports.” Well, GET the results and the reports and THEN tell me what is covered or not covered. I am trying to heal from major surgery. I do not need the added stress.

Thank goodness I’m starting a new career. I may need every penny to pay for this. Who’s buying and selling Real Estate? Call me.

I don’t even like that new car smell.

Waking Up is Hard to Do

Everything went black as they wheeled me through the operating room double doors. The next thing I remember was faint sounds and confusion. A male nurse was introducing himself and telling me that it was time to move out of recovery and into my room. I gathered that he was in a rush, and everything seemed a bit disjointed. I faded in and out of sleep and don’t remember much.

What I do remember from the first night was extreme thirst. I’ve never been so thirsty in my life. I was not allowed to drink anything in case they needed to rush me back into surgery. Those first hours are critical for the blood vessels to connect to the flap (as boob #2 is now called.) I was too out of it to help myself, and am so grateful for Andy, who stayed awake by my side all night. He was able to use a little sponge on a stick to put water on my lips and inside my mouth. I think I begged for water all night. At some points, my mouth was so dry that my lips stuck to my teeth. The nurse finally slathered vaseline on my lips and that helped quite a bit.

I also remember feeling my right arm puffing up like a balloon. Lymphedema does not like the trauma of surgery. I remember the nurses coming in every hour to check my vitals. I’d wake up enough to ask for water and push my pain med button. They used a doppler radar to listen to the blood flow to the flap. It sounded like a baby’s heartbeat. I couldn’t tell you much else about the night. I don’t know if I ever actually opened my eyes. I do remember once, when the nurse asked me if I needed anything else, I said, “a giant glass of water, please.” I did not get a giant glass of water. By morning, I was so parched I couldn’t talk. All I wanted was water, sleep and serenity.

Then, all of a sudden, there was a grating, raucous conversation that seemed all about sunshine and happiness but with a nasty undertone. It was the nurse’s shift change, and the raucous one would be my caregiver for the next twelve, long hours of my life. She was syrupy-sweet on the surface with an underlying toxic passive aggressive core. Let’s call her Nurse Saccharine. She managed to hold on to her tight smile as she insulted and criticized everyone around her, loudly. She crashed into the room, jolting me out of sleep every hour to check my vitals. She would be in charge of getting me to stand for the first time, which is never pleasant, even under the best of circumstances. She kept popping in telling me excuses and delays. In the meantime, the physical therapist came in to get me up for a walk, but I still had a catheter and was connected to drain suction on the wall. I told her the nurse was coming after lunch to get me up, so she arranged to come back around 1:00. Well, Nurse Saccharine did not like this at all. She thought it was ridiculous that the PT didn’t just do it herself and get me up.

I further inconvenienced her when I asked for additional pain pills before trying to get out of bed. This turned out to be a mistake, as she gave me something that made me very sick. Up until that point, I had a “magic button” that delivered dilaudid to me as frequently as every 10 minutes. It worked great on the pain, and didn’t cause nausea! A tough combination in my opinion. So now, nauseous and weak, it was time to let Nurse Saccharine pull my catheter and get me on my feet. Yippy!

The hospital bed did much of the work, but the final twist pulled hard on the fresh incision which spans from hip to hip. After the searing pain subsided, I put my feet on the floor and stood up. Next, three or four steps to the chair. I made it! I settled in and was finally able to sip on water. She told me that she would be back to get me walking to the bathroom in a couple hours. At this point, the water was too much for my stomach and just when the PT came to work with me, I started throwing up. I think this was Saccharine’s way of punishing the PT for not doing more earlier. We did not go for a walk. Instead, the PT wrapped my arm and I continued to sit in the chair feeling awful.

I asked for more anti-nausea meds, but the nurse said the doctor wouldn’t approve another one. I couldn’t keep the water down, and going on 30 hours without water, the nurse wanted me to pee. Not surprisingly, I could not. Saccharine threatened to put a catheter back in if I didn’t pee, so I started drinking my water a little more ambitiously. No way was I going to let this woman put a catheter in while I was alert.

I finally ordered some broth and jello to try to calm my stomach down. It was Saturday afternoon and time for the NFL play-off games. Andy came back from catching up on his sleep to watch the games with me. I slept through most of both games, though. The shift change came again and thankfully I got a much nicer nurse. She told us that the previous nurse informed her that I refused the additional anti-nausea meds. Imagine that. We told her that, despite begging for additional anti-nausea meds, Nurse Saccharine told us the doctor said no- an outright lie. Why would anyone make someone suffer like that? Once I got the nausea under control, I felt so much better. I had a pretty good night. I needed to rest up because the next day was the Packer game, and I didn’t want to sleep through that!

As 7am approached, and time for the shift change, I started feeling worse and worse, imagining another 12 hours with Saccharine. My whole day turned around when, at 7:15, a very nice nurse quietly came in my room and introduced herself as my nurse for the day!! No more Nurse Saccharine!! I later learned that Andy told them at the nurses’ station that we had trust issues with the nurse and did not want to have a repeat of the previous day! That made my day. Sunday was a turning point. I felt good. I could get up on my own, eat, manage the pain and nausea, and the Packer game was awesome!!!

Surgery Prep

We arrived in Chicago on Wednesday, January 4th, a day before my pre-op appointments. We wanted time to settle in before the hospital stay. As a bonus, we saved time to stop at a favorite market for sushi and a visit to the Museum of Science and Industry. Just barely enough time, as we learned that the museum closed at 4:00. We tried to linger a little bit, but lights were going off, and a security guard started to close the big metal gate to lock off the room we were in. It felt a little “Indiana Jones” as we ran to get through the closing gate. The guard seemed less amused. Of course, the gift shop remained open slightly longer, and people were funneled out that way. There was some pretty cool stuff, too, but we weren’t here to shop.

Back at our “vacation rental”, I spent some time unpacking and repacking a hospital bag, repeatedly. It was hard to decide what I would actually use at the hospital. We went out to a little hole-in-the-wall restaurant that had amazingly authentic Jamaican food, which we carried out because the ambience was uninviting. Back at the apartment, we fired up Netflix and feasted on delicious food and Ting.

On Thursday, I had an appointment with the physical therapist, where we measured my swollen arm and went over instructions on how to manage my lymphedema after surgery.

Then it was on to meet with the surgeon. He took pictures and had me stand up so he could mark me up with cut lines. There were a LOT of cut lines. Dr Chang answered all of our questions and at the end of the appointment, I felt ready. Let’s do this!

Friday morning, the alarm went off at 4:30am. I still felt ready. Let’s do this!

I had a 5:30am check-in time. The usual routine of no food/ no coffee ensued, and we got in the car for the cold, dark ride to the hospital. The car told us that the external temperature was 3 degrees. Good time to start my hibernation. We checked in to a very nice, modern waiting area, complete with huge display boards with secret code numbers which indicate where your loved one is in their surgery process.

Andy also received a rather large, round “buzzer” device, similar to the ones you get at restaurants. It would buzz and vibrate and light up when there was any new information about my surgery. Also, they used them individually to let us know when it was our turn to leave for prep. Sadly, there was an announcement that we would be separated for the initial part of surgery prep, and we were told to say our goodbyes and get our hugs in. This caught me off guard and I started to cry. Andy has been with me every step of the way so far. It felt unfair to be split up like that.

One by one the buzzers started to sound, and slowly patients were escorted off to the elevators as their families looked on. Around 5:50, Andy’s buzzer sounded and I had nothing left to do but say goodbye and follow the nurse onto the elevator. There wasn’t much conversation and it felt a bit solemn. When the elevator stopped, we entered the room where everyone is prepped for surgery and the nurse indicated which bed was mine. Here, we did all of the usual prep – undress and put everything in a locker, wipe down with surgical wipes, put on a hospital gown, socks and head cover. Next, it’s vitals, medical history and put in an IV. The only thing missing was Andy by my side to make me smile and keep me calm with silly cat videos. I was left alone, except for the occasional visit from a resident, nurse or anesthesiologist. Soon, I started to see families walking in and felt cheered up that soon I would be with Andy again. Sure enough, he soon walked in the room and it all felt okay again. He has that kind of calming effect on me.

I have to ask, “what is with you, anesthesiologists??” It seems to go like this every time. I am involved in conversations with nurses or doctors, and inevitably an anesthesiologist sneaks around behind me and slips me something. Seriously, it’s happened like this every time! I start to feel woozy and people in-the-know in front of me have that look on their faces. I turn. “You slipped me something, didn’t you?” Yep. The bed starts being rolled away, I tell Andy I love him, and the last thing I remember is the double door to the OR and the bright lights. I drift off.

Foob Decision

Foob indecision, I should say. My thoughts on the topic of breast reconstruction change daily. Some days, I feel like I’m done with all things related to breast cancer. Other days, though, I feel the need to finish this journey, and face reconstruction. It’s a difficult decision. I do not feel “incomplete” in any way. I feel strong and healthy, and I’m at a very happy point in my life. As I’ve said all along, I’m not a vain individual, so my physical appearance isn’t dictating what I do next. How I feel will dictate my next move. Deep down, I would like to complete the process.

Two years ago, I had a double mastectomy. One year ago, I had one implant removed due to infection. I am now living, lopsided, with one implant and one flat chest wall. Though I feel whole, the journey feels somehow incomplete. Every day, I have pain and tightness in my chest and ribs from scar tissue and radiation damage. The swelling in my arm from lymphedema is also a struggle. Inevitably, each time I see my doctors, they gesture at my partial reconstruction and the question comes up, “what are you going to do about that?”

To reconstruct or not to reconstruct, that is the question.

Honestly, I do not know the answer to that question. Like everything else along the way, I face several options, each with their own pros and cons. One, do nothing and live with one “foob” and one “not-foob”, swapping the prosthetic between bras and swimsuits as needed, or skipping it and going awkwardly foob-less. Two, remove the remaining implant and go flat and fabulous. Three, face additional reconstructive surgeries.

Avoiding surgery sounds nice, but would mean accepting a lifetime with a prosthesis, which, frankly, is a bit of a pain in the ass, and quite uncomfortable. It is awkward dealing with the prosthesis in the locker room or when I sleep at someone else’s house. I occasionally feel that my desire to avoid surgery is a cop-out based on fear of facing something difficult. Removing the current implant would be a relief. I do not like it. It feels uncomfortable, gets cold, and does not look very boob-like. Getting rid of it and going flat crosses my mind often, though then I may be stuck fumbling around with two prostheses, because I am not comfortable enough to go out in public without “something” there. Doing the surgeries to complete the reconstructive process does hold some appeal for me.

At this point in my life, I had wanted to be done with surgery. Between 2012-2015, I have had six surgeries . My kids were only 7 and 9 when they witnessed my first surgery. They have been there to help me recover from all six surgeries. I do not want their childhood memories dominated by pain, weakness, and their mom’s inability to keep up with them. We have already faced a lifetime of “I can’t do that.” How can I teach my children that they can do anything if I am constantly unable? I am also trying to teach my children to face fears and do difficult things to achieve the things that they want out of life. Can I encourage that if I’m avoiding this next step in my journey?

Do I want to have a normal appearance? Of course. But realistically, I lost that two years ago when I had the mastectomies. “Normal” will never be fully regained. Reconstruction can go a long way to give me a decent appearance while fully clothed, but that is not the same as getting my body back. My body will never be the same again. I am growing stronger, but I still have limitations from multiple surgeries, radiation and the effects of lymphedema. My priority is the ability to do activities with my children. If the surgery I am facing can relieve the lymphedema and restore strength I lost, then it may be worth facing that adversity.

Again, like art, I am a work in progress.

Bipolar Facebook Feed

I have always loved travel. I dream of full time travel with my husband. I dream of “road-schooling” my children, broadening all of our horizons, and seeing the world. I have done a fair amount of travel, and I want to share this passion with my kids. My husband, Andrew Pain, has lived the dream (taking a year off to see North, Central and South America by motorcycle.) He currently writes and presents about leaving it all behind in order to travel.

Somewhere I get stuck, though, as I stay behind yet again. Here I sit as Andy travels to present on motorcycle travel. Last week to Horizon’s Unlimited, and this week to Overland Expo. He’ll have the opportunity to chat with amazing people who have taken the plunge to live boldly and explore the world in ways that many only dream of. I don’t blame Andy for leaving me behind-he always wants me to join him. He even offers to stay home with me. Why should we both miss these opportunities? It gets harder and harder for him to leave each time, but I encourage him to go. Despite my encouragement, it’s painful to let him go. Watching him drive away dredges up difficult memories of his trip in 2014, when I was going through chemo and too weak to travel with him. I hate allowing health problems  to impose limitations on me.

Again this year, health issues are forcing me to stay behind. This has been a particularly challenging month, fighting off sickness, pain and lymphedema. The ups and downs in my life are reflected back at me as I browse through my Facebook feed. I think my Facebook feed is becoming Bipolar. On one hand, I am a member of the club that no one wants to join-Breast Cancer fighters/survivors. I’m involved in a number of groups, and these feeds are full of small triumphs, as well as devastating heartbreaks. I often have tears in my eyes when I read the things so many young women are struggling through. On the other hand, I am also a member in a number of motorcycle and travel groups filled with stories of adventure and world travel. Their tales put a fire in me and I dream of adventure. I feel like my Cancer ordeal is over, and I’m ready to move forward to live boldly, yet it always seems some new roadblock comes my way, halting me in my tracks.

This week has been depressing to me. All my hard work re-defining my life after cancer took a hit. I am not feeling well. I’ve had several doctor’s appointments, face difficult decisions and the ever-present fear of recurrence. The lymphedema in my right arm has progressed to the point where it is effecting the quality of my life. I learned of a surgery that can help reduce swelling so I went for a consultation with a surgeon at the University of Chicago who does microsurgery called Lymph Node Bypass. Coming out of the consultation, I had more questions than I did going in. He recommends not only the Bypass, but also a very difficult and invasive form of breast reconstruction called DIEP Flap, claiming that the full surgery will give me better success against the lymphedema. More on that in a future post, but in a nutshell, it involves cutting from hip to hip and using all of that fat, skin, and tissue to reconstruct the breast. He can take the lymph nodes at the same time and move them to the area where mine were removed. I had previously decided against reconstruction  because I don’t want another long recovery slowing me down, but now I’m unsure.

Also, this week, I am back at the cardiologist’s office. I started having an irregular heartbeat a couple weeks ago, to the extent that it was keeping me up at night. I am experiencing shortness of breath-disconcerting because I am in really good shape otherwise. Lately, I feel like I felt after treatment, weak and fatigued. It’s impossible for a cancer survivor to stop fears of metastatic disease from creeping into the imagination. The cardiologist had me wear a Holter Monitor and did blood work to determine if I was in heart failure (I’m NOT) – yay! Why heart failure, you ask, in a young (-ish) triathlete? Chemo and radiation can damage the heart. So here we go with more tests. I have a heart echocardiogram tomorrow. If the cardiologist finds nothing wrong with my heart, then we look to my lungs, with fear of mets heavily on my mind.

This is not my plan. My plan is to travel the world with my family. I’m a newlywed and excited about our future. I’m super thrilled about our upcoming “family-moon” to Alaska this summer. Just today, I was reading about a family of four that is traveling the world and homeschooling. They will be at the Overland Expo where Andy is presenting on motorcycle travel. Overland Expo-where I am not going to be because I have too many doctor’s appointments. I would have liked the chance to sit and learn about their experiences. This is my dream. How do I attain this dream when I am trapped in a world of hospitals, medical tests, surgeries, and side effects. I want it all behind me, but it just keeps tripping me up. I refuse to let cancer dictate how I live my life. But how?

It all makes me feel a bit Bipolar. Depressed about my health one minute, manic about upcoming trips and a life fully lived the next. I feel a little jealous of those at Overland Expo this week. Those who have found a way to ditch it all and live their dreams of traveling and experiencing the world. Clearly, we all have obstacles and fears to overcome. Life is not easy for anyone. Unfortunately, my obstacles keep pulling me down when all I really want to do is fly. How does one get past that?

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

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.

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…

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.

Second Opinion…and Third…and Fourth

In my mission to avoid surgery, I have gathered the opinions of many doctors, peers, and experts over the last 3 weeks.  After talking with Dr. Tjoe, my surgical oncologist, I decided that I wanted a chance to meet with the other plastic surgeon that she had consulted with about my situation.  I felt the need to get a second opinion and hear about the other muscle sparing options that were mentioned.  I also consulted with my Dermatologist to get a non-surgical perspective.

I got in for my second opinion on February 2nd.  The appointment went really well.  Surgeon #2 spent nearly an hour and a half with me discussing my options and answering my questions.  He took the time to show me pictures of procedures I might be facing so I could see the outcomes I might expect.  We ruled out the TRAM Flap (abdominal) since I just had fat grafting from my abdomen.  He explained that the tissue could be damaged and blood supply compromised.  By the end of the appointment, his recommendation was for me to undergo not one, but three additional surgeries.  First, remove the implant and damaged skin and allow at least 3 months for my skin to heal.  Then he would do a LAT Flap, using muscle, tissue and skin from my back to replace the skin that was removed in the previous surgery, and put in a tissue expander to stretch the area to the desired size.  Finally, I would have one more surgery to exchange the expander for the final implant.

Not thrilled, because, going into the appointment, I had hope that there would be a non-surgical way to heal, and coming out of the appointment, I was facing three more surgeries.  He was also willing to let me try to heal a little longer, and prescribe a cream that is used with burns and difficult to heal wounds.  He also suggested that I continue with the antibiotic for up to six weeks.  I did learn a lot at the consultation with the second surgeon, and I took that information and continued to read and learn more.

Yesterday, I returned for my follow up with surgeon #1.  We discussed the other surgeon’s strategy as compared with his.  He feels that it would be overly conservative to spread it out over 3 surgeries.  He believes that the cellulitis is confined to the skin, thus making it possible to replace the damaged skin with the LAT Flap and keep the implant in place.  I like the idea of only one more surgery, but I’m not entirely comfortable with this option either.  The last thing I want is to go through the surgery only to have the infection continue, forcing me to have another surgery to remove the new implant.  Then I’d have to start all over again, and would have sustained damage to my back in the process.  It seems to me that the infection goes beyond the skin, because I have pain in my side, chest, back and arm. My arm is very swollen.  He said I could have an ultrasound guided aspiration and a culture to test if the infection is deeper into my tissue.  Otherwise, he could make that determination during the surgery by taking the implant out and testing for signs of infection before deciding whether to continue with the reconstruction or not.

My first thought upon leaving that appointment was to let surgeon #1 attempt to do the reconstruction in one surgery, with the understanding that, if there was any sign of infection, I would want to simply remove the implant and heal before attempting reconstruction.  Leaving the surgeon’s office, I made my way over to my medical oncologist for a follow up appointment.

Being early, I decided to detour upstairs to pick my physical therapist’s brain and ask her about a compression sleeve to deal with the lymphedema in my arm.  When I showed her my arm and explained the pain I had, she assured me that the swelling was a reaction to the ongoing infection rather than lymphedema.  Her explanation was that lymphedema does not cause pain or limit range of motion.  She also told me that compression sleeves are not the most effective way to reduce the swelling, since “one size fits all” doesn’t take into account the fluctuating levels of swelling.  Instead, she gave me a wrap (like an ace bandage, but not so stretchy), and instructed me on how to use it.

On to the oncologist, I got blood work done, which showed that my white blood cell count was still low, not helping me fight the infection.  I decided to withdraw from the study drug since that was most likely the cause.  I also asked the oncologists and her nurses their opinions on the surgical decision I was facing.   It was a long day of appointments and a lot of information to process.  I didn’t feel ready to make any decisions until I had a chance to sleep on it.

Today, I feel ready to move forward with my decision.  I have spoken with 3 surgeons, an oncologist, a physical therapist, peers in my support group, and on and on.  I know that I’ve exhausted all other options, and surgery needs to happen soon.  The incision wound is getting worse, not better, after a month of trying to save the skin and heal.  The pain and swelling in my arm is affecting my day to day existence.

My gut feeling is that I need to get the implant out as soon as possible and heal fully before attempting another reconstruction.  Then when I am sure that my skin is better and the infection is handled, I will do the LAT flap procedure straight to the new implant.  So, 2 surgeries rather than aggressively doing one surgery or conservatively doing 3.  Seems like a good compromise.  I’m ready.

The Waiting Game

Over the weekend, I did what I could to rest and give my body the chance to fight the infection. My right arm, which felt like it’d been through a meat pulverizer, became increasingly swollen and very sore, further limiting my range of motion. I developed a strange ridge just above my elbow that was extremely tender and I wondered if it was a blood clot (but Andy told me it wasn’t). I also feared lymphedema, which is a buildup of lymph fluid that causes swelling of the arm. I kept up with the heat and ibuprofen to ease the cording pain, and waited until Monday, when I would follow up with the nurse and the physical therapist.

The first thing I wanted an answer to was what the strange and painful lump in my arm was. The nurse told me that it was not a blood clot, but she was at a loss for what it was. We went on to talk about what the plastic surgeon was recommending, and she measured the red area to see if the antibiotics were resolving the infection. It was smaller, but still pretty red. She said that the radiation fibrosis was making my skin so tight over the implant that I wasn’t getting enough blood flow to the area to promote healing. In healthy skin, they could simply remove the damaged area, and sew it back up to heal, but this wasn’t an option for me because my damaged skin wouldn’t be able to handle being pulled back together and, with limited blood flow, would struggle to heal. She said, because of my age, she felt it would be worth it to do the more involved reconstruction, rather than to remove the implant and have to deal with a prosthesis long term.

Next, it was back up to physical therapy, where my therapist introduced me to another patient who had also sustained nerve damage in her arm during surgery, and was also dealing with celulitis. We started chatting and comparing notes, when I looked up and saw Leslie, my PT, talking to Dr. Tjoe, my surgical oncologist. I haven’t seen Dr. Tjoe since last spring. Happy to see her, I waved, and then I realized she was there to check on me, as she motioned for me to join them.  She said she had been following my notes from the plastic surgeon and her nurse, and wanted to take a look for herself.

So, we went off to a room, along with Leslie and a resident, and they all started examining me and discussing my situation. I again told them about the swelling and cording, and the strange ridge on my arm. Leslie was the one who identified it as another manifestation of axillary web syndrome (cording), which made sense because the pain was the same as I’d had in the past, it just looked different.  Dr. Tjoe explained that the pain and swelling was a result of the infection.

I was so fortunate to have Dr. Tjoe there to look me over. She is a remarkable doctor and really takes the time to explain things and answer all of my questions. I told her that I was hoping to avoid additional surgery (mainly because I am ready to rebuild my strength and move on), but that I wasn’t so stubborn as to refuse surgery if all the doctors were telling me that surgery would be my best option for the long term.

She explained to me that my plastic surgeon is very proactive, and would prefer to do the surgery under controlled circumstances rather than wait until it became an emergency situation, where a raging infection could force him to remove the implant entirely, and not reconstruct. She also explained that, by taking healthy tissue and muscle from my back (LAT flap) or abdomen (TRAM flap), I would not have to struggle to fight the constant tightening and limitations that the radiation fibrosis is causing, and will continue to cause for years to come. She mentioned another colleague who does a newer variation on the surgery which does not involve cutting the abdominal muscles (DIEP Flap), which sounds better in my opinion. Then, she asked if she could take a picture of the area so she could consult with the second plastic surgeon.

Leslie started working on my cording, an extremely painful process, which involves pulling and stretching and massaging my arm to “release” the cords. It is torture, but it usually provides some relief. While working on me, Leslie got a phone call with further instructions from Dr. Tjoe. It reminded me of the game Telephone, where one person whispers something to the next person, and then each person whispers what they heard until the last person says it out loud, usually with a mixed up translation. I can’t say for sure that this message didn’t get mixed up along the way, but from what I got out of it, the second plastic surgeon told Dr. Tjoe who told her nurse, who told Leslie to tell me that he concurred with the opinion that my skin may not be capable of healing on its own. They suggested that I start researching my options more so that I will be ready to make a decision if need be. They recommended that I take a second course of the antibiotic to keep the infection at bay, and I was told to schedule another follow up with the nurse, and to continue to work with Leslie.

My daily trips to the hospital continue this week, as we wait and see.