750_8116

In 2015, I did my first sprint triathlon shortly after completing cancer treatment. It was a clear, redefining moment in my life that I will always cherish. Next weekend, this year’s group of courageous women will complete a triathlon. As a Team Phoenix athlete, and now a volunteer for the team, I am inspired every day by the powerful changes that the women of Team Phoenix undergo as a result of this remarkable program. Please consider donating to show your support and help many more women experience this transformation. #phoenixrising #TeamPhoenixStrong

 

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.

Waking Up is Hard to Do

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.

photo-jan-07-8-22-45-am

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!!!

photo-jan-09-11-23-49-am

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.

photo-jan-06-5-18-40-am

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.

photo-jan-05-4-33-03-pm

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.

Deer in the Headlight

img_2439

Picture this-it is early morning on a twisty country road along the mighty Mississippi River. The sun is just beginning to rise, pink light playing on the leaves. Fog is clinging in the shadows. The deer are very active and darting all around me. I figure I face two options. I can either stay in bed, postpone the ride, allowing the fear of hitting a deer paralyze me with “what if”. Or I can fire up the bike and go experience the twists in the road. Taking time to appreciate the cool morning air, the beauty all around, even though there might be dangers at any curve. I’ve learned a lot about fear over the last few years. Now, given a choice, I’ll alway chose to jump in, take the chance, and experience life fully.

How did I get here? Beginning in May, I started struggling with heart palpitations and shortness of breath. By the end of May, all of the tests on my heart came back with the all clear. The next step would be to test my lungs. I was feeling frustrated with medical tests with no answers. Andy was out of town presenting at the Overland Expo in Flagstaff. Restless, I decided that I needed some throttle therapy. It was a hot weekend. I loaded up the bike and headed west to camp along the Mississippi river. I spent the night in the hammock tent at Wyalusing State Park, high on the river bluffs. Large storms passed through in the early morning hours, I watched the rain and lightning from my perch overlooking the river. I woke up to a very soggy campsite, so there was no reason to linger. I loaded the bike for an early start on the great river road. I packed up camp and got on the road at 6:30 am. I had a lot of miles ahead of me and I was excited to ride.

Occasionally on the ride, a deer would cross the road in front of me and I would feel myself tense up with fear. When I noticed the tension, I’d take a deep breath, slow down a bit, and let the fear go. Proceeding a little more cautiously, my mind wandered, as often happens when I’m getting my throttle therapy. I made a connection between the fear of hitting a deer on my motorcycle and the fear of cancer re-impacting my life. The analogy bounced around my mind. It became crystal clear and gave me some degree of comfort. Simply, I concluded, there is only so much that can be done to prevent bad things from happening. After taking precautions, all you can do is let go and trust that things will be alright. Things out of your control will happen whether you fear it or not. There is no reason to paralyze yourself with irrational fear over things that are out of your control. I will not let the fear that something bad MIGHT happen prevent me from doing the things I love. That is not living.

 

On this particular ride, I decided to slow down and watch carefully for deer crossing, but also committed to relaxing and enjoying the ride as fully as possible, embracing the cool morning air and the curves in the road. Deer are unpredictable. If a deer decided to dart out into the road, too close to avoid collision, it would be outside of my control. Cancer, also unpredictable, can return despite all the efforts to eat well, exercise, and avoid carcinogens. Once we take reasonable precautions to keep safe on the motorcycle or maintain our health, all that’s left is to is to live and let life happen. I, for one, am not going to allow fear to stop me from doing the things I love. I put 500 miles on the Suzuki that day. The deer and I stayed out of each other’s way, and I met up with Andy in Hannibal, MO, where we had a great night exploring a new town. Fear did not stop me.

We rode home together, and I saw my Medical Oncologist a few weeks later. She saw that all of my heart tests were clear, yet my complaint of shortness of breath put her on alert and she scheduled me immediately for a chest x-ray and CT scan. I suppose that, as a cancer patient, red flags go up faster than with other patients. The first step is always to rule out the serious stuff. That we did. With clean scan results, I proceeded with my plans for a big party celebrating my marriage. The rest of the summer was spent on an epic “family-moon” with my husband and my daughters. We had many adventures along the way and made great memories. Had we sat home worrying about “what ifs,” we never would have enjoyed a trip like this.

img_2516

 

 

I frequently find comfort in the analogy I dreamed up during that early morning riding along the Mississippi. I remind myself that the fear itself is not tangible. Fear of danger on the motorcycle, or fear of cancer are “maybes” out of our control. The thing we fear may or may not happen, so why let it control our lives? The fear may feel real, but fear can be controlled and overcome. We can control the fear. We have limited control over accidents. We have limited control over cancer, but we can control the fear of these things. We can control how we face these things. I will not stop doing things I love due to something that may never happen.

These are the lessons I learned when facing the deer in the headlight that day on the river. In motorcycling, prepare yourself. Always improve on your riding skills, wear safety gear, stay alert for the unexpected. If a deer crosses your path, you will be ready. Then enjoy the ride. In life, prepare yourself for health. Exercise, reduce stress, eat healthy food, listen to what your body needs, stay alert for the unexpected. Then enjoy the joys of living a full life. You’ll be ready.