This Phoenix Will Rise Again

This Phoenix Will Rise Again

The fire and ashes are building all around me. I’ve been through this cycle of burning down and rising up from the ashes before, and I will do it again. Metastatic Breast Cancer. My current set-back.  As a breast cancer survivor, it’s not an unexpected hurdle. Sadly, I’ve witnessed my peers going through similar difficulties. All I can do is take it day by day, trust my treatment plan, and do my best to redefine myself once more.

I haven’t been feeling well for some time. I wrote it off to my slow recovery from the knee injury, and the fact that I have not been able to get back into a regular exercise routine. This spring, I generally felt weak and out of shape. About a month ago, my symptoms were getting noticeably worse. I had shortness of breath, and I developed wheezing and a cough. I have to say, this is the worst cough I’ve ever had. And I’ve had all forms of bronchitis, pneumonia, etc. This is definitely worse.

On July 23rd, I went to the ER with sharp pain in my ribs along with the severe cough and shortness of breath. I knew something was not right with my lungs. After a number of tests, I ended up being hospitalized overnight. They found that I have pleural effusion (fluid in the lining around both my lungs). They did a thoracentesis (stuck a catheter into the pleural cavity via my back- yes, I was awake…) on the right side to drain the fluid and sent it for analysis. The left side was more complicated. The fluid was loculated, hardened into multiple, fibrotic pockets, therefore, not free flowing nor able to drain. I was told at this time that surgery would be the only way to clear the gunk from my left side.

Over the next week or so, I did several other tests, X-rays, CT scan and blood work. And coughed and coughed. 

On August 1st, I saw my oncologist to try to make sense of the results and develop a treatment plan. The fluid in my pleural cavity (space around my lungs) contains cancer cells that had spread from my original breast tumor. All of the other scans are clear, though, and the cells have not formed any tumors that could be detected. Of course, ILC, Invasive Lobular Carcinoma is known for being extremely difficult to detect via scan, so there’s that grain of salt. 

The cells have changed slightly from the original tumor (ER/PR+HER2- to ER+PR/HER2-), but not enough for me to need to go through chemo again. My doctor will put me on hormone therapies (Ibrance and Faslodex) which attack the cells directly. In her experience with other patients, the cells are quite responsive to this therapy. 

Originally, my oncologist felt that the surgery would be too invasive, and that the treatment would clear up the fluid. However, at my next appointment, on August 9th, when I told her that the cough was becoming unbearable, she called the lung specialist. He advised that since the left side is loculated, it will be difficult for the hormones to get into the fluid to do their thing, and he recommended the surgery. With that, he and my oncologist called a lung surgeon immediately and I got in for an appointment the next day. Yay, the perks of having a dream team of connected super-doctors.

Yesterday, August 10th, I met with the lung surgeon to discuss a robotic surgery, called thorascopy (no, I will NOT be awake this time). He will make a small incision and insert a camera, and several other incisions for the surgical instruments that will be used to “break up” the pockets and scrape out the goo. After that, there are two possible outcomes. Either my lung will re-inflate and he will put talc in the cavity to make the lung stick to the pleural lining so that fluid can’t re-fill the cavity. Or, my lung won’t re-inflate, due to damage or tumors or other bad stuff, and he will need to leave a catheter (chest tube) in so that the fluid can continue to drain. This could be for a matter of weeks or months. I’m pulling for option one! But, at this point, I’ll do whatever it takes to relieve the cough and get the cancer cells out. If that means a chest tube, then that means a chest tube. Depending on the outcome, I could be in the hospital for one night or for several nights.

Wasting no time, surgery is scheduled for this Monday, August 13th. This is the least amount of time I’ve ever had to prepare for surgery. My pre-surgery nesting mode is kicking in to high gear, but I don’t really have the energy to do the things on my “to-do” list, so I’m just going to have to accept that stuff isn’t going to get done before surgery. Surgery and healing are my number one priority right now.

This is not a hurdle I wanted to face, but it is the hurdle in front of me, so I have no choice but to charge at it and jump it. Overall, I am very positive about fully recovering from this. Right now, I am laying low and resting as much as I can (and did I mention, coughing…). I look forward to getting some relief soon with the surgery. I will keep everyone updated as new info comes in. 

Cancer-versary, Take 4

Cancer-versary, Take 4

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Four years ago today, I heard the words “you have breast cancer” forever changing my life and challenging my limits. I’ll never forget that day. My time on this planet became more precious that day. My future became more fragile. Looking back brings a flood of emotion as I recall the experience of that moment in time, now altered by the lens of time and new perspective. I now count every year that passes as progress towards the goal of so many survivors – stay on the right side of the percentages to become a 5-year survivor, a 10-year survivor, and on and on.

Amongst cancer survivors, this date is known as a Cancerversary. There is some debate regarding which date truly represents a Cancerversary. Some choose the day they were diagnosed. Others choose the day surgery removed the tumor and they became cancer-free. Others count their anniversary as the day they complete all active treatment. For me, there are several dates that will forever stand as milestones on this journey. I mark January 31st as my Cancerversary, the day I learned of my diagnosis, a day I will never forget. I consider February 24th as my Cancer-Free Versary, the day I became cancer free with surgery. Other dates also are permanently etched into my mind; the first day of chemo, last day of chemo, end of radiation and active treatment, reconstruction surgery.

As much as I’d love to put it all behind me, being a cancer survivor has become a part of who I am. As time goes on, it tries to fall into the back recesses of my memory. Unfortunately, there are always reminders that pop into my day unexpectedly. My latest surgery is a big reminder. Pain is a reminder. Limitations on the things I am able to do is a reminder. The friendships I’ve made, the women who have touched my life in ways I never imagined, and, sadly, the friends I’ve lost serve to keep cancer’s ugly presence in my life.

January 31st never comes and goes without my thoughts turning to what cancer has taken from me, but also what it has given to me. Each year, when I reflect on the impact cancer had on my family, I’m thankful that I’ve been blessed with another year to watch my children grow. I’m thankful that my children have grown to be strong, amazing girls. I’m thankful for every year that I have with my husband. I’m thankful for each new adventure and the ability to plan new adventures for my future.

I honor this anniversary as a day that changed me deeply. I honor this day with respect and love for all of my fellow cancer survivors. Here’s to one more spin around on this amazing planet.

 

 

Perfect 10

Perfect 10

perfect 10

Okay, the image of Bo Derek from the movie “10” has nothing to do with this blog post, but it came to mind when I wrote the title, and I thought it was humorous, so there she is…. On a more serious note, this post is about re-defining what my own “perfect 10” means after the last few years and, of course, after turning 50 (loud and proud!!!) I’m also rounding out my surgery count at a perfect 10.

I didn’t learn from my last blog post, because the first big thing I’m tackling on my “50 after 50 List”, exactly one week after my 50th birthday, is surgery number TENcheck. I’m aiming for a perfect 10. I’m quietly hoping that the nice, round number 10 will symbolize my last time under the knife, but I’m not holding my breath. If I’ve learned anything in my 50 years on planet earth, it’s that life does not fit into the neat little, predictable boxes we may envision for ourselves. I won’t waste my energy worrying about how many more surgeries I might have in my future. I’m going to focus all my energy on the present surgery.

January 26th will be  surgery number ten. Guess what? It’s not the knee surgery you might have anticipated due to my recent accident, rather I’m back at it with the plastic surgeon in Chicago. A lot of people have asked me what this surgery involves. They say, “I thought you did that surgery last year.” It’s complicated, so let me try my best to clarify why I am traveling to Chicago once again for surgery – Andy and I are calling it a “destination surgery”. I know, it is exotic. We did the same thing last January, and Andy still doesn’t let me count it as a honeymoon.

I’ve had a year to recover from Phase One. I’m not gonna lie to you- I’m still not fully recovered. It was one of the tougher ones, and I’m a bit of a connoisseur. My recovery goal was to build my strength back up and get as close to “normal” as possible before Phase Two. My method for recovery was volunteering with Team Phoenix, and completing the Tri-Ing for Children’s Triathlon, and (almost) the J-Hawk Late Bird. As you know, I never made it to the Late Bird, thanks to my rendezvous with a Jeep.

By September, I was feeling strong and setting my sights on a late fall surgery, leaving time to come back in 2018 for the Madison IronMan. My surgeon in Chicago knew that I wanted to have surgery after the September 24th triathlon. Ironically, they called me just after my accident with an opening – October 13th…. With the Honor Flight on October 14th, there was no way I was going to take that date. Anyway, I needed more time to let my knee and bruising heal before going through more trauma (I’m guessing the fat grafting won’t be coming from my thigh with this bruising). It would have to wait. Next available date would be January 26th. I’m so good at hitting “new year, new deductible….

Photo Sep 20, 7 36 40 AM

ouch!

Now, I am more than ready to get on with it. So, back to what this surgery is all about. This is Phase Two DIEP Flap breast reconstruction. If you look back at my post called “Ninth One’s a Doozy”, you will get a little more background on Phase One of this process, which I completed a year ago. In a nutshell, Phase One is the major “relocating” of tissue from my abdomen to my chest to reconstruct a breast post-mastectomy. That surgery included a Lymph Node Transfer in an effort to control my Lymphedema. This is the reason I am traveling to Chicago for surgery. Very few surgeons do this surgery.

diep-flap

Phase Two involves sculpting and tweaking to try to make my DIEP flap match my other implant side. I’m not going for a perfect 10. I am hoping to be done with the awkward 4.5 I’ve been since the double mastectomy, though. People “in the know” will recognize terms such as “Ken Doll”, “Dog Ears”, and “Fat Necrosis”. These are some of the unsightly, and painful issues that can be fixed in phase two. For more on that, go ask Dr Google (actually, don’t! I just did a google images search, and it ain’t pretty). The fat necrosis is the worst. It causes me pain every day. The other stuff is just embarrassing in a locker room.

Phase 2 will also involve a lymphovenous bypass in my arm as a further attempt to alleviate the swelling caused by my lymphedema. It involves micro surgery in my arm to re-route the lymph vessels into the veins, so that the veins can carry the excess lymph fluid out of my arm. Sounds pretty cool, in theory. I’ll let you know how it feels next week.

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I’ve said it before and I’ll say it again, “wish me luck….no….wish my surgeon luck-I’ll be sleeping.”

50 After 50

50 After 50

I’ve been working on a “50 after 50” list for over a year now. I suppose you could call it a bucket list, but I’m not planning to kick the bucket any time soon, so I prefer not to use that term. I’m keeping a list of fifty big things that I want to achieve after I turn 50 years old. My original idea was to do all fifty things in my 50th year on this planet, which would have been an amazing accomplishment, but what’s the fun in rushing. I’m here for the long haul. I am going to aim high and enjoy each and every experience on my list. Today I hit that 50 year milestone (hooray!!) That means it’s time to start checking things off my list.

My kids tease me, saying that I don’t understand what a bucket list is supposed to be. This is perhaps because I sometimes joke around, saying things like, “Cancer – I can check that one off my list”, “getting hit by a car-check”, and “one more surgery-check that off….” I know that a bucket list is supposed to be the things one wants to do during one’s life. I realize it should not contain “things that could have knocked me off”. Yet the way I look at it, all of the things we experience in this life add to who we are and what we are capable of. I’ve faced things that could have killed me, but didn’t. That’s a big deal. So, as much as I would prefer to not have to check these things off my list, they are the things that have made me strong. Moving forward, I’m certainly not going to intentionally put things on this list that might make me kick the bucket (though, I guess kite-surfing falls into that category). If they come up, I’ll check them off, nonetheless, and move on.

I thought of the idea for a 50 after 50 list after my first triathlon, back in 2015. Being a part of Team Phoenix taught me that I could re-define my life after some significant obstacles. Before that tri, I had feared that I would have to alter my goals, settle for less in life due to these setbacks. I know now that I can still aim high if I’m focused and work hard to reach my goals.

The first thing on my list is to complete an Ironman. I’m going to need to be in good shape to do some of the other things on my list, so why not start big. Ironically, the day I was riding my bike through Grant Park, I was thinking about the Madison Ironman. I was going to sign up for the 2018 race after my ride, until my ride ended unexpectedly. Then plans changed a bit. As it stands, it is uncertain if I will be able to do an Ironman, but I’m keeping it on the list for now. Maybe I’ll wait until I have a bionic knee.

In the name of keeping myself accountable, I’m going to share the first few things on my list:
◦ Complete an Ironman
◦ Show my daughters the beauty in this world
◦ Live in a warm climate
◦ Visit all of the National Parks
◦ Learn Spanish
◦ Hike the Inca trail to Machu Picchu
◦ Travel the World by Motorcycle
◦ Kite-surf
◦ Play Bass Guitar
◦ Scuba dive the Galapagos

That’s a glimpse of my list. Stay tuned to see the rest….

A Phoenix and a J-Hawk

It was only two days after being hit by the Jeep, but I didn’t want to miss the annual Team Phoenix fundraising 5K at InStep. I needed my Team Phoenix sisters! If anyone can encourage me to rise up after being knocked down, it would be my strong Phoenix family. It was great to get off the couch and see everyone. I obviously did not do the 5K, but Coach Lauren set me up to direct traffic at the final turn, so I felt like I was participating. I may have thrown a few people off their race times, when they stopped to check on me, but it wasn’t a competitive 5K. I even joined a couple of friends to walk the final stretch to the finish line. I was getting around pretty well with the crutches, thanks to the cutting edge instructional video at the ER.

2017 Run For A Reason-21.2

directing traffic

Run For A Reason 2017 -1

While we were there, I asked the PT at InStep take a look at Andy’s foot. We were thinking he could fit him for a shoe insert that would help relieve his pain. He put his finger on the spot where Andy had been having pain, and Andy almost went through the ceiling. That gave us a name for his problem- it was call posterior tibial tendon dysfunction. The PT said it is a very difficult injury to recover from and told Andy he needed to wear a boot to immobilize the foot so it would have a chance to heal. Finally, I felt like we were on the way to taking care of Andy’s foot pain.
Dr. Tjoe, the doctor who started Team Phoenix, was there and, always looking out for the well-being of her Team Phoenix ladies, checked up on me. She asked if I had an orthopedic surgeon. My favorite orthopedic doctor had retired shortly after my rotator cuff surgery, and I hadn’t found a surgeon I liked since them. She offered to make a few phone calls to her orthopedic surgeon friends. How could I pass that up. As I was getting ready to leave InStep, someone came out with the store phone, looking for me. It was Dr Tjoe, asking if I’d be available that evening to be seen by Dr Gordon. On a Sunday? Of course! She had him call me and we arranged to meet Sunday evening at 5:30. It turns out that he works out of the same office where my favorite orthopedic surgeon used to work. I felt very lucky to be in such good hands. I’m blessed with doctors who go above and beyond to look out for my well-being.
He did a complete exam of my knee, and said it felt fairly stable, but was too swollen to determine any more. He gave me a better knee brace than the ER had given me, told me to keep up with the ice and ibuprofen, and wait for the swelling to go down. He thought I still wanted to do the triathlon in a week, and seemed to think that might be reasonable. I had no intention of doing a triathlon as banged up as I felt. He works with professional athletes, so I assume he sees a fair number of people playing through their injuries. I am not at that level, and know when to take a break to let my body heal. He said if it still hurt after the swelling subsided, he would order an MRI. Back to waiting.


On Sunday September 24th, my family went to the J-Hawk triathlon in Whitewater. I wanted to cheer everyone on, and my kids were still signed up for the kid’s race. It was a rare, hot September day. My kids did the tri despite the heat, though I think they were miserable. I am so proud of them for sticking with it. I was still on crutches and it was a long day on my feet, but I was happy to be a part of race day with my friends. I would have preferred to participate with them. I’m not a fan of having limitations slapped on me. I’d have to get off the crutches soon and get back to training for the next triathlon!

Friday, the 15th

It was Friday, September 15th. I woke up feeling great. I drove the kids to school, and then back home to get ready for my morning bike ride through Grant Park. I smooched my husband a bit (we’re newlyweds) and tried to get him to come biking with me. He’d been struggling with foot pain all summer, so he didn’t want to join me. As I was getting ready to ride, I told him, “that’s it, I’m taking you to a clinic today to get your foot checked out….”

“AFTER my bike ride.”

Andy is the kind of guy who takes care of everybody else first, and doesn’t want to complicate things by imposing his own problems into the mix. He has taken such good care of me through so much, and I want to be able to do that for him, too. Sometimes, I have to force him to let me take care of him. I had to get him to the doctor. His foot pain had gone on too long. Nothing was going to prevent me from biking on a morning like this, though. It was an absolutely ideal morning for a bike ride. The temperature was in the 60s, there wasn’t a hint of wind, and the blue skies were perfectly clear. I’d get home before the clinics opened, anyway, and then I’d get him to a doctor.

I put on a long-sleeved shirt and biking pants, but decided not to wear my bicycling shoes that clip into the pedals, because they’ve been making my feet go numb when I ride. Instead, opting to wear my running shoes. And off I went. My favorite part about living here is the fact that we are right on the parkway off of Grant Park, which gives me over 20 miles of beautiful, off-road biking paths right at my doorstep. Being a part of Team Phoenix has re-ignited my love of bicycling, and my morning ride through Grant Park has become my favorite way to start my day strong. I ride early, so I often have beautiful Grant Park to myself. I get to enjoy the sun rising over Lake Michigan, fresh morning air, and I usually see wildlife. I use this time for morning meditation. It has become a rejuvenating part of my life.

It’s been a long recovery from my DIEP flap surgery in January. I’ve been in pain, and haven’t regained my full strength or mobility. I was getting stronger all the time, though, between my regular swimming and biking. In one week, I would be doing my second sprint triathlon of the year with my two daughters. The first triathlon was at the end of July, and I almost dropped out of it. I pulled a muscle in my back in early July pulling a weed out of the ground. Something had to give, and it wasn’t going to be the weed. The muscle in my back snapped so hard that my knees buckled and I fell to the ground. After an ER visit, rest, ice, and ibuprofen, I was back to swimming and biking, but not ready to run. I did not feel ready to do a triathlon, but my family and friends encouraged me to stick with it, and I did it!


That morning, I was feeling particularly good. For the first time since surgery, I felt ready for the upcoming triathlon. As I made my way through the park, I was reflecting on how far I’ve come since my cancer diagnosis. I felt strong and fully in sync with my bike as I sailed effortlessly across the winding path. It reminds me of a feeling I get as a motorcyclist, when I’m so in tune with my bike that it becomes an extension of me. It is a liberating feeling. My muscles control the bike subconsciously, leaving my mind and body and all senses free to fully immerse in the surroundings. That was the state of mind I was in and my thoughts turned to my up-coming goals. I’ve been keeping a “50After50” Bucket List of 50 big, high reaching goals that I want to achieve after my 50th year on this planet. Think Big. Aim High! I was feeling strong and had decided to sign up for the 2018 IronMan in Madison. I had watched my niece, Tamra, and some of my Tri-Faster and Team Phoenix friends do the IronMan this year, and I wanted to experience it. I’ll need to be strong to tackle some of the things on my bucket list (kite-surfing, hiking the Inca trail, hitting all of the National Parks, exploring the world on my motorcycle)! What better way to prepare?

My goal this summer was to have a strong recovery from DIEP surgery and go into the second phase of surgery strong. The plan was to do the triathlon on Sept 24th, accompany my dad on a Stars and Stripes Honor flight on October 14th, and then tackle the next surgery in November, so that by 2018 (and my 50th birthday!) I could hit the ground running and live big.

All of these reflections were in my mind as I came up out of the park, nearing Cudahy, where the bicycle path crosses the entrance to a parking lot. As I approached the driveway, a Jeep was coming out of the parking lot. I slowed way down as the Jeep came to a stop at the stop sign. I did what I always tell my kids to do. I say, “Never assume the driver is going to see you. Always make eye contact.” I paused and looked at the driver. I even said out loud, “Do you see me? Are you stopping? You are stopping, right?” And I proceeded to cross (at the marked crosswalk).

He did NOT see me. It seemed surreal, almost like he intended to scare me. He suddenly hit the gas, but surely he would stop again before he got to me. Then he hit the gas again and soon his big, white Jeep was riding over my bike, with my legs tangled under the bike frame. I was thrown to the concrete-Hard.

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.