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.

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.

Ninth One’s a Doozy

A week from tomorrow, I will face my ninth surgery. You’d think I’d have this down by now, but this one is going to be a doozy. I’ve had almost two years to consider many options. I put a lot of thought into deciding which surgery would best repair the damage done by cancer, surgeries, infection, radiation, and lymphedema. I consulted three plastic surgeons (and Dr. Google). The main motivator in this decision has been the lymphedema. It has been increasingly difficult to control the swelling in my arm despite all my efforts. I have to try to slow the progression of this incurable condition in my dominant (read-Throttle) arm.

Because of the lymphedema, I have decided to work with Dr. Chang at the University of Chicago. He was an early pioneer of Lymph Node Transfer procedures in the US. I had a consultation with Dr Chang in May. At that time, he told me that my best chances for successfully controlling the lymphedema would be to undergo a DIEP Flap breast reconstruction with lymph node transfer. This option will also require a second surgery, which will fine-tune the reconstruction and possibly require a lymphaticovenular bypass surgery in my arm, which will re-route blocked lymph vessels into veins where the blood flow will carry trapped fluid out of my arm.

Here’s how Wikipedia defines it, “DIEP Flap surgery is a type of breast reconstruction in which blood vessels called deep inferior epigastric perforators (DIEP), as well as the skin and fat connected to them, are removed from the lower abdomen and transferred to the chest to reconstruct a breast after mastectomy.” In layman’s terms, they will cut me hip to hip along the “bikini” line (though my bikini days are best left in the 90s) and use that tissue to make a boob. The added bonus is that, while my abdomen is flayed open, Dr. Chang can harvest the underutilized lymph nodes that he locates in my abdomen and transfer them into my armpit where I lost lymph nodes to cancer, causing the lymphedema. The goal is that the transplanted nodes will start to function in their new location to help filter lymphatic fluid out of my arm. It’s pretty fascinating stuff. I am thrilled at the chance to repair the damage.

They say a picture’s worth a thousand words, but I thought I’d spare you the gore and let you get a visual from this lovely graphic. If you want to seek out the gore on your own, I encourage you to google “DIEP Flap.”

diep-flap

I am scheduled for surgery on January 6th. I had originally tried to get scheduled for November so I could be well on the way to recovery (and my new career-more on that later!) by the New Year. But, by the time I called to schedule in August, Dr. Chang was already fully booked for 2016. I can’t say that I’m surprised. He is one of the first doctors in the US to do lymph node transfer, and the only one in the midwest. It’s probably for the best anyway. The timing worked out alright because I had every excuse to eat everything in sight over the holidays. My motto became, “I’m growing a boob”, as I worked to gain belly fat. How often does one get the chance to want to gain belly fat, after all?!!

So, I’m fattened up and trying to mentally prepare myself for the difficult recovery I will face in January and February. Andy booked a condo a couple of blocks from the hospital in Chicago for just over a week on VRBO (vacation rentals by owner.) With a name like that, I jokingly tease him that this can be our ‘second honeymoon.’ Our One Year Wedding Anniversary is on January 1st!!! Our first honeymoon included dragging my kids along as we traipsed around North America. He believes that I still owe him a honeymoon. For some reason, though, he feels that renting a condo in Chicago in January for recovery from surgery is also less than romantic. Huh? I guess I’ll just have to keep trying every year until I get the honeymoon thing right. My goal=perpetual honeymoon….

I keep recalling the quote that “it takes a village.” So, here I am, calling on my village. I am going to face 12 hours or more on the operating table, 5 nights in the hospital, another 3 nights in our “vacation rental” so that I will be in Chicago for my one week follow-up appointment, and a solid 6-8 weeks to recover. I am going to need help. Mainly, I am going to need help with my kids. I’m calling on my village to check in on my kids while I am out of town. I’m calling on my village to help me back on my feet. I’m calling on my village, people. (I just like saying that-it conjures up a mental image of the Village People, and I’m not even on pain pills yet.)

 

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.

Beta Readers wanted!

Beta Readers wanted!

OneKnight'sJourney_MEDIUMI’m excited to announce that I am turning this blog into a book! Over the course of this journey through cancer treatment, I’ve had requests to turn my blog into a book, so I have decided to do just that. I hope to inspire other women to discover ways of embracing the positive moments along the way and allow love and humor to be the armor that protects them through the tough stuff.

I have a rough draft nearly ready, so I am looking for 8-10 people to read a pdf of my book and provide me with feedback, comments and questions. If you are willing to be a beta reader for me, please e-mail me at 1knightsjourney@gmail.com and I will send you a pdf, along with additional instructions.

As an added incentive, I will send a free, signed copy of One Knight’s Journey to the beta readers as soon as it is printed. Also, if you further help me out by writing an amazon review, you will also receive a signed, printed copy of “Sidelines”, the book written by my husband about his experiences being by my side through cancer treatment.

Sidelines_MEDIUM

 

Thanks!

Living with NED, Marrying Pain

Time flies. Thank goodness, because I don’t like the alternative. I just realized that I have not updated my blog in a long time. I had not intended to stop writing altogether. Rather, my focus has been on starting a new chapter in my life, closing the book on the impact that cancer had in my life. Cancer treatment, for me, is becoming a fading memory. Lessons have been learned. Changes have been made. Priorities have re-ordered themselves.

Part of being a cancer survivor involves the fear that the cancer will come back. Each new pain or symptom is cause for more tests. This fall has been filled with tests for me, ranging from a lumbar puncture, brain MRI, cervical spine MRI, and a colonoscopy. It has also been an emotional fall filled with the struggles of friends enduring the setbacks and recurrences of cancer.

One thing I’ve learned along the way is that there is no point in stressing about the tests until all the results are in. A quote from the movie, “Bridge of Spies” resonates with me. The attorney often asked the man suspected of being a spy if he was worried. The man always calmly stated, “would it help?” Nope. Worrying doesn’t help and stress is bad. My goal is to get passed the fear to get to what’s good and positive in life.

I’m happy to say that, after all the test results are in, I am still living with NED (No Evidence of Disease). I love it, and plan to keep NED around for a good, long time.

So many positive things have happened for me over the summer. I am so thankful for the opportunity to slow down and savor the positive. I spent a great deal of time re-claiming my health with the amazing women who are Team Phoenix, culminating in my first Sprint Triathlon, and lifelong friendships. I also purchase a beautiful home with my boyfriend. We had time at the lake, camping trips, motorcycle rides. I’m feeling great and looking forward to many more adventures with my family.

I am also happy to announce that I will be marrying Andy Pain, my partner in all things, on January 1st, 2016. This makes me so happy. Andy has been with me through the best and worst moments of my life, with never-ending love and support, adventure (and kitten videos). I can’t imagine a better person to spend my life with.  I can’t imagine a better way to ring in the New Year than, “Living with NED, Marrying Pain”.

Suzandy

Team Phoenix

I have been so fortunate to have spent the past 14 weeks training side by side with the remarkable group of cancer survivors that is Team Phoenix 2015.  We were thrown together this spring by the common bond of a battle we did not choose.  We started out with a degree of uncertainty, not knowing what to expect from Team Phoenix.  Somehow, they believe that they could transform us into triathletes, even after the hardships our bodies had faced due to surgery, chemotherapy and radiation.

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As time went on, and we grew stronger, it was clear that Team Phoenix was changing our lives.  We were in charge of our next battle.  We were going to take control of our healing.  We were going to swim, bike and run across that finish line.  The support and encouragement is unlike anything I have experience before in my life.  The dedication of the coaches, sponsors, medical staff, and volunteers is amazing.  I have learned so much.  I have pushed beyond fears and perceived limitations.  I have become strong, proud, alive and re-defined!!!

Sunday, August 9th, our group of 47 women will swim 1/2 mile, bike 12 miles, and run 3 miles in one big victory lap.  We are in charge of our health!  Please consider making a donation to Team Phoenix so that many more women can take control and experience cancer survivorship re-defined!  Come cheer us on at the Pleasant Prairie RecPlex, August 9th at 7am.  Wear purple!!