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.

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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!!!

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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.

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.”

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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.)