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.

Hundred Bill CornersBefore 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.

The Waiting Game

Sue and I have been through some pre-surgery time together. Too much time, but I want her strong and healthy, and this is the road she needs to take. I’m glad she lets me come along, but I think she still owes me a honeymoon.
The pre-op time usually wraps up the same way. We’re watching cat videos, and a team of people walk in. Usually, there is only one or two at a time, but this is always a group – three to five. They start going over the same basic medical information they’ve already asked a bunch of times, and while Sue is answering, one of them slips happy juice into her IV. She misses it every time.
This time, after she had clarified (again) what she was allergic to, I leaned over and gave her a kiss. “I wanted to get that in now, since you’ll be passed out soon,” I whispered. Well, I didn’t really whisper, but she laughed over missing the medication being given again.
This pre-op had been a lot harder. We aren’t used to being apart, and I sat for an hour in the waiting area (admittedly a really nice waiting area) watching the sky lighten. I like it better when Sue is happy and relaxed going into surgery, and I was pretty sure she was spending a lot of time by herself, waiting.
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When they rolled her off I got a few simple instructions. If I was leaving the building I had to leave a phone number, otherwise I keep my restaurant-pager and they would buzz when there was an update. There was no way I was going to be able to sit and wait without going nuts, so I got back into the car and drove to the field museum. I haven’t been since Sue (the dinosaur) arrived, whenever that was. A while ago. I thought it would be a good diversion. I should have gotten groceries and tried to sleep, but I needed to be doing something.
I sent text messages to family and posts to Facebook, trying to pass along the information I had. It was going to be a long surgery. We’d first heard 12 hours, but that was apparently both the surgery and recovery time. It ended up being more like 14 from when we arrived in the morning, since the recovery time is a minimum of six hours while they monitor blood flow to the flap – but that was in the future.
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Film image, scanned when I got home. With a cat’s help, if you can’t tell.

I wasn’t sure how parking worked at the Field Museum and ended up under Soldier Field. I left most of my stuff (including my coat) in the car, thinking it was attached to the Museum. It wasn’t, and the walk was…brisk…. Once inside I bought the standard ticket (less than the packages they have all the signs up for, but there wasn’t going to be time to see everything anyway) and went walking around. The lady who sold me the ticket gave me a map with what I could and couldn’t see, and told me her favorite parts.
As I was walking around the animal panoramas (there are a lot of animal panoramas) I realized my phone hadn’t fully recharged overnight. I have an iPhone 6s with Lifeproof Fre Power case – when everything is charged up power is not an issue – but the case hadn’t charged overnight and my phone was down 45%. I couldn’t risk a dead phone, so I limited my phone pictures. Luckily, I also had with my Minolta 35mm film camera, so it got to take more pictures than normal.
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Hours went by. I got calls saying everything was going fine with the surgery. I wandered around the museum. I thought I would need to be back in the waiting area around 1pm, based on what we’d heard in the morning, and I didn’t want to pay for museum food, so I was back at Chicago Medical at 12:15 in line at the Qdoba they have inside when my phone rang to say the surgery was done and Dr Chang wanted to talk to me. I got out of line and headed for the elevator, hustling past the security guard who wanted to stop me. He really just wanted to check to see who I was there for and give me a visitor pass, but I didn’t want to wait.
Up to the fancy lobby, then into a small conference room, and waiting. A few minutes later, Dr Chang walked in. He said everything went “perfect,” and I would be let down into recovery soon. Sue later wanted to know what else he said, but there wasn’t anything else. I didn’t ask any questions. What else was there to say, Perfect is Perfect.
I went back to Qdoba and got lunch. I was just finishing when I got the call saying I could go to recovery, perfect timing, and headed back upstairs. This time the security guard didn’t even look at me. Maybe I scared him?
Sue was still sleeping in recovery. I learned from the nurse that she had to stay for at least six hours, that she couldn’t have anything to eat or drink until the next morning. The flap part of her surgery was being very closely monitored, and if anything went wrong she was going to have to go back for another operation, and her stomach had to stay empty.
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I looked at the surgical sites and they looked good. I learned about the doppler checks and the imbedded sensor that was continually monitoring oxygen and flow levels inside the flap. And I drank some soda, wrote some, plugged in my phone and sent out updates. And waiting. Every now and then Sue would wake up and I would sponge some water around her lips and gums. Once we were in the room we were given Vasoline for her lips, which helped more, but it was still just the sponges. She was uncomfortable, even with a pain button, but there wasn’t anything else I could do. I watched her sleep, fitfully, and dozed a few times. The nurse came in regularly to check the doppler and sensor, get vital signs, see if I needed anything. The sky got lighter outside, and then it was 7am.
A new nurse came in for the day shift, and since I figured Sue was going to have more company for a while I would go back to our rental for some sleep. I ended up staying a few more hours, making sure Sue was as comfortable as I could get her (still no water to drink), then told her I would be back in the afternoon. I sent out another update, and then drove back to bed.

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.

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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.

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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.

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.