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.

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.)

 

Deconstructing Sue

Last night was a sleepless night with pre-surgery anxiety.  I am 100% sure that the surgery to remove the implant and damaged skin, scheduled for tomorrow, is absolutely the right decision.  Yet I spent the night, tossing and turning, deconstructing every aspect of reconstruction and deconstruction.  Part of me wishes that I had  originally chosen not to reconstruct at all, saving myself a lot of pain, surgery, and struggle over the past year.  On the other hand, I’m not convinced that I want to spend the rest of my (long) life disfigured in that way.  Seems a petty thing to worry about after all I’ve been through this past year.

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My arm in a Lympha Press

What I do know, is that the implant has to go.  Timing is everything, and, sadly, I may have postponed this surgery a week too long.  This week was a struggle with searing pain in my chest and back and lymphedema in my right arm.  My skin is unable to heal itself, and I’m on my third course of antibiotics to keep the infection in check.  I am counting the minutes until I can get the surgery over with, and allow myself to heal.  I wanted to be sure before doing anything so I wouldn’t second guess my decision.  My PT said, “you can second guess yourself all you want, but it won’t do any good.  You may have second guessed a decision to do the surgery earlier, too”.  She has a valid point.  All I can do is choose options and stick with them.

Again, timing is everything, and happily, I got to spend last weekend (Valentine’s Day) in Chicago with Andy at the motorcycle show and pizza meet-up with friends.  (As my good friend Mary said, “combining romance and motorcycles – brilliant!”).  Absolutely!  We had so much fun at the motorcycle show that I forgot all about the troubles I was having.  It was worth postponing everything so I could fit that rejuvenating road trip in.  I may have found my next motorcycle, too…

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Weeeeee-Strom

Ironically, tomorrow’s surgery (February 23rd, 2015) is one day short of last year’s mastectomy (February 24th, 2014), marking my cancer-free-versary and, with it, a lot of emotion and difficult memories.  It took a year to (not quite fully) recover from the pain of the mastectomy, suffering the side effects of axillary web syndrome, radiation fibrosis, and lymphedema, along with the painful process of filling the tissue expanders to stretch my skin and muscle to make room for an implant.  Then another surgery to exchange the tissue expander for the implant, and now another surgery to undo all that, removing the implant and damaged skin to be left with a flat chest wall.  It’s way too much trouble, really, just to have the appearance of breasts.

So, even though I have a fear of facing another surgery tomorrow, another recovery, and the disappointing setback of losing another “breast” (or foob, as those of us with fake boobs refer to them) I remind myself, as I approach the one year mark, that the important thing is that the cancer is gone.  All the rest of it is just hurdles to clear on the road to recovery.