Better Than It Was Before

Good news following surgery No. 9…. No complications! I had surgery on Friday, August 19, stayed on pain pills for only 24 hours and went back to work on Monday, August 22. While I know I should have been taking it easy (and I did to a degree – no heavy lifting), I wasn’t able to ease back into work. With the race weekend only two weeks away, I ended up putting in close to 60 hours in 5 days. Not smart, I know, but right now work just demands that. Fortunately, I’m running on adrenaline, otherwise I’d be in more pain.

Speaking of pain, my dad just asked me this weekend how my pain was. I told him that not a day goes by without pain and it has been that way since I was diagnosed. I’ve gotten so used to it, that it has become a way of life. You don’t realize it’s an issue until you verbalize it and realize how not normal it is to be in pain every day. Unfortunately, there is nothing the doctors can do with my pain and it isn’t something I could take pain pills for. It is random stabbing pains that vary in severity and length. It hurts so much that I have to stop talking when it happens. It’s a bit embarrassing in front of people who don’t know me and then I feel obligated to explain. I assume it might get better with time, but I really don’t know. It’s a combination of many surgeries and radiation with nerves trying to regenerate and also dealing with scar tissue. God knows, that left side has been operated on way too many times and it just isn’t happy.

The bad news following the surgery is the breast still looks bad. You would think after the $1,500 gummy bear implant that it would be looking better. There are many areas he is going to have to work on to get it somewhat normal looking. I’m not looking for perfection; I just want it to look normal in clothes and we are still not there without some prosthetic assistance. Hopefully, when I see the doctor again after the race he will have a plan for the final surgery in December. Just pray for me that there is only one more!

I had really hoped I was going to be done with all my medical treatments before turning 40 which happens on Sept. 9. In my mind, life truly would begin at 40 for me. After these last two years, I have no issues turning 40 as I am incredibly happy to put my 30’s in the rearview mirror. I believe I have no where better to go than up in this next decade and you better believe I plan to make the most of it.

And here’s the first step that things will be better on the other side of this journey but I need to give you the backstory first. When I graduated college, my parents gave me a beautiful sapphire and diamond ring for my college graduation gift. It was the nicest piece of jewelry I ever owned and wore it almost every day. Sapphire is my birthstone and it is my favorite gemstone. Well, when I was going through chemo in 2009, I was so incredibly foggy all the time. Sadly, in addition to all that I lost during my cancer battle, I lost that ring. I was devastated. I looked everywhere and I have no idea what happened to it. I’m a very organized person and rarely ever lose anything. I don’t know why, but I lost the ring. And I was heartbroken. I decided after beating cancer, I was going to get my life back and part of that was getting a new ring. I’ve been looking for quite some time now. I almost bought a new ring as my not getting to go to Yellowstone consolation gift, but when my air conditioner broke, it wasn’t practical to spend the money. Heck, it isn’t practical ever to spend money like that, but it was mostly what that ring stood for. Cancer took it from me and I was going to get it back. Well, I celebrated my birthday early with my parents this weekend and they surprised me with a beautiful new ring for my 40th birthday. My mom has had it for eight months now, waiting to give it to me. I was so blown away. I told my mom that my goal for my life after cancer is “better than it was before.” And this ring is better than the one I had. It’s an amazing symbol for me to look at every day and make that promise to myself when I’m feeling down or doubting myself: BETTER THAN IT WAS BEFORE. While there are some areas I can’t change after my battle, in the areas I can, I plan to make the most of it.

I’m celebrating my 40th with a small get together with friends a favorite dive of mine on my actual birthday. I’m not big into making things about me, so I wanted it small, laid back and fun. I did decide to get a nice cake for my birthday and one of my friends from high school is a talented cake artist. She asked me about my concept and I told her I wanted a little bird because when I’m done with all my surgeries I will be “ready to fly.” This idea came from a gift my high school girlfriends got me when I first got diagnosed with cancer. They got me a Pandora bracelet with an angel charm to “keep me safe” during treatment. At little moments along the way they gave me other charms: a blue charm so when I lost my hair at least I still had my blue eyes; a pink ribbon and pink flowers for my fight; my initial M so I would never forget myself in the battle; a bead named “Inner Strength” and a kitty cat to give me comfort. I also added some own beads along the way: two crème beads to represent my two breasts lost in my mastectomy; the “Forget-me-not” bead for the hysterectomy (as I will never forget losing my ability to have kids) and the “Journey” bead for my one year cancer free. I purchased two more beads to complete the bracelet, but had been waiting to put them on it. The first one I bought was an owl for when I finally got my “Hooters.” So I got to put that bead on just this week. And the final bead is a little bird, so when I’m done, I’m ready to fly. I still have that bead stored away and I can’t wait to put it on the bracelet hopefully in December. While it is a little premature to put “ready to fly” on the cake for my birthday, I figure that I’m wishing for nothing more for my 40th year. So why not put it on the cake when I make my birthday wish?

Thanks for your continued support and interest in my journey. Wish me luck with race week and making it through with some stamina and energy!

Much love,
Marcy

Gummy Bear Boobs?!

Well, I went in to see my reconstructive surgeon on Friday. Upon examination, he did not want to expand as we had planned as the skin on my chest is too thin. Turns out I never had an infection in July and the red spot on my chest was from the pressure of the expander edge on my thin skin. So that last surgery and hospitalization was to be safe which I get, but really it was a waste of time.

Instead of expanding, he told me he wanted to do surgery as soon as possible. I about fell out of my chair…. You all know that my job involves working at Atlanta Motor Speedway. Our race weekend is Sept. 2-4, just three weeks away. I told the surgeon that unless it was medically necessary, we needed to wait. I’m too overwhelmed with work right now to be having surgery. He said the skin is incredibly thin and he did not want to wait. He worked with me to have surgery on a Friday, so I only miss one day at work. Which right now is a ton, but it is what it is.

So I’m having surgery this Friday, two weeks out of race weekend. I just pray I have the stamina to make it through the exhausting race weekend. I’m nervous to tell you the truth about this being so close to race weekend, but my doctor is adamant to have the surgery now.

Since he can’t expand, he can’t rely on the skin to make the natural teardrop shape of the breast like they did on my right side. So he’s using a different implant on the left side that is anatomically shaped so it does the work for the skin. He told me that they call it the “Gummy Bear” implant. Nice, just what a woman wants to hear – Gummy Bear Boobs.

While that sounds like a great solution, the only problem is the implant has been in clinical trial for 10 years now and is still considered “experimental” so my insurance won’t cover it. I will be billed $1,500 for the implant which I’m not thrilled about, especially when the surgeon feels it is his best option.

The great thing is the fundraiser all my friends donated to in August 2009 still has money to cover that expense. The bad news is it basically empties the medical fund account so I have no money to donate to charity which I had really wanted to do with what was left over. I just want to thank everyone who donated two years ago as I have used every penny for all my medical needs/prescriptions/uncovered expenses/medical leave. I would have been in dire straits without it. You have no idea the impact that has had on me. I cannot say “thank you” enough.

I also can’t wrap my head around the fact that we actually might be getting closer to the end. I’ve been so incredibly busy at work and I’ve had so many problems to date, I don’t even want to get my hopes up that this will go as planned. It’s sad isn’t it? When you come to expect the worst? To tell you the truth, it has to go right because with my job, I can’t afford any hiccups right now. The goal is to be back at work on Monday, August 22 and my surgeon says that’s absolutely doable as long as I don’t lift anything for a while. As long as I can talk and type, I can get to race weekend!

Keep your fingers crossed for me friends and say a little prayer!

Love to you all!
Marcy

Perplexed

Well, both my reconstructive surgeon and infectious disease doctor are perplexed following my surgery.

On Thursday a little after noon, my reconstructive surgeon removed the expander, washed the area with three liters of antibiotics, then put a new expander back in. He said the inside looked great, with no trace of bacteria. He also filled the expander with a decent amount of fluid to continue stretching the area.

He sent some tissue to be cultured, but believes it will come back negative as he saw nothing with the naked eye. Plus, I was also on antibiotics for 2.5 weeks prior to the surgery, which also would have cleared any possible infections.

The reason why both doctors are perplexed is they can’t understand why the area is still red and hot. Since I’m not spiking a fever, they feel I may just live with this red spot for now as it doesn’t seem to be getting any bigger or smaller. They have suggested I just keep an eye on it to make sure it doesn’t change. The only thing they can guess why the area is red is once skin is radiated, it just doesn’t act like normal, healthy skin.

I was given my first round of IV antibiotics prior to the surgery, I got the second round this morning and I will get the third round tomorrow morning. After that, I will get discharged and take antibiotics in pill form at home.

I’m super excited to be going home after 2.5 days versus the 4+ I was expecting. I’m unsure when I will go back to work, but I’m assuming early next week, but I still need to get clearance from my surgeon.

Surprisingly, I’ve been in decent spirits. Surgery doesn’t even phase me anymore. Yesterday, when they wheeled me back into the operating room they hadn’t administered any anesthesia, so I was wide awake. If I hadn’t had so many other surgeries, I would have been freaked out to see that room and all the tools. However, I was extremely calm and even got on the operating table all by myself.

It’s kinda sad I’m becoming a pro at all of this. I’m not sure this is something a person should boast being good at… I guess eight surgeries in 24 months will do that to you!

When I spoke to my surgeon today, he said he wants to do a quick expansion in August, then do the surgery to swap out the expander for the implant in late September. He wants to do this quickly since we didn’t have this red spot when we had the implant in in February earlier this year. He wonders if the expander is aggravating the skin because that skin so thin in that area of the chest. Eventually, he will put some fatty tissue in that area so it won’t show the implant rippling and that may even help make the red spot disappear.

It’s a little disconcerting that no one seems to know what the problem is, but all I can do it just keep moving forward and taking my doctor’s advice.

Thank you again for everyone’s kind words of support. They mean more than you know!

Love,
Marcy

Worst-Case Scenario

I saw both doctors this morning - the infectious disease doctor and my reconstructive surgeon. I was correct in my prediction from yesterday’s blog on what would happen. And guess, what? Go figure, I didn’t get the easiest option. I got a combination of the two options I didn’t want to see happen.

While my infectious disease doctor recommended taking my expander out entirely, he deferred to my plastic surgeon, not wanting to “undo” any of his work. My reconstructive surgeon does not want to lose the pocket he has created for the implant, so is going to perform surgery where he will swap out the old expander for a new one and wash the area to rid the infection. I will follow the surgery up with four days of IV antibiotics in the hospital.

So on Thursday, July 21 at 7:00 a.m., I will be admitted to Piedmont Hospital to start this whole process. The surgery will be at noon. I am unsure when I will be discharged – probably Sunday/Monday/Tuesday. I would assume I would go back to work Tuesday/Wednesday of next week.

Again, this is not what I wanted to happen, as it was the worst case outcome. Well, I take that back. The worst case outcome would be having no expander put back in as that would set us back even more in the reconstruction process.

And it is also crappy timing as things are SO busy at work right now with the NASCAR race weekend only 44 days away. That’s stress I don’t need. But I know, I know… my health comes first.

I barely cried this morning when the infectious disease doctor recommended surgery as I was prepared for the worst possible news. I’m just numb to tell you the truth. I don’t understand what God is wanting me to learn in all of this. SO OVER IT….

Marcy

Problem Child

All was moving nicely along in June. I was getting expanded every Friday, getting ready for my July surgery. Expansion sucks, but it wasn’t as painful as it had been in the past. I guess since the skin and muscle had been stretched before, everything was responding great with not too much pain.

However, the last week of June, a red spot popped up on my chest. I didn’t need the doctor to tell me the infection resurfaced that we thought we beat in May. When the infectious disease doctor told me it was cleared up in May, he said infections could flare up at any point: days, weeks, months, up to a year, but recurrences rarely happened, so I shouldn’t have anything to worry about. Yeah, guess he jinxed me.

When I saw his medical practice partner on July 1, I asked her why this happened and if there was anything I could have done to prevent it. She responded, “Nope, just shitty luck.” Grrrreat…..

The doctor put me back on antibiotics for two weeks. This antibiotic wasn’t as nasty as the ones in May so I was thrilled. All I had to be concerned about was sun exposure. Not exactly what you want to hear in the summertime, but I managed to stay out of the sun.

I guess I shouldn’t have been so excited because this antibiotic hasn’t made a dent. After two weeks, the red spot has not disappeared, so I called the doctor Friday. He extended the prescription and wants to see me Tuesday morning. Based on what’s been discussed in the past, I believe he will consider one of three options. First, put me back on the nasty antibiotics as it did the job the first time (or so we thought). Second, admit me to the hospital for four days of IV antibiotics. Third, schedule surgery to take the expander out and heal the infection with one of the first two options. I have no idea what he will recommend. Regardless, I won’t be happy with any of the outcomes.

I know I’ve referred to myself as “Sally Side-Effect” before, but the first thing that went through my mind when the infection flared back up was what a “Problem Child” I am. And it doesn’t seem to be getting any better.

June 29 was two years from my date of diagnosis and I’m not anywhere near the end of this road. When the infection recurred, it was the first time I thought about giving up the reconstruction process and just give up on my appearance. All I want to do it look some sort of normal and I don’t understand why it has been such a hardship. I’m numb. Over it. Just exhausted. And I just keep trudging through each day. I don’t know how to do it any different. I don’t know what it’s like to go through a day and feel great with no pain. I’ve learned to live with pain and I think that’s the most upsetting when I take a step back and look at the big picture. But I’m also proud at how I’m balancing soldiering on and doing what I can to nurture myself.

That’s all I can do for now.

Love to you all!
Marcy

Everything happens for a reason – REVEALED!

In life many of us believe, “Everything happens for a reason.” You have faith that if things do not turn out your way, that there is a reason for it. The frustrating part is waiting for the reason to reveal itself. Sometimes we get lucky and find out right away. Sometimes it reveals itself later on. And sometimes, you never find out. That’s where faith plays a huge role.

Well, I got lucky after my recent setbacks in late April and early May. I didn’t have to rely on faith. Not only was I shown the reason why all the setbacks happened; I was given three, not one, reasons.

After the April surgery that didn’t go as planned and the infection that followed, I cancelled my trip to Yellowstone National Park. I cancelled it for three reasons: first, the doctors weren’t sure if the infection would clear up; second, I would need those vacation days for subsequent surgeries not planned; and third, I wouldn’t be physically strong enough to do the hiking I wanted to do due to the infection.

In my last post, I told you how upsetting all of this was. I was down; more down than I had been in a long time. God must have known that I needed help, because the reasons started to reveal themselves pretty quickly why all the setbacks occurred and my trip was cancelled.

On Sunday, May 22nd, I arrived home after a short work trip to the All-Star weekend at Charlotte Motor Speedway. Originally, I had planned to come home that day, swap out suitcases then board a plane to Jackson Hole, Wyoming. When I got home, my house was over 90 degrees as my air conditioning unit had broken; of course 8 months after the warranty expired. Had I still had the trip scheduled, I wouldn’t have had time to fix the air and I wouldn’t have been able to leave my cats in a home that hot for a week. I honestly don’t know what I would have done. Reason No. 1 revealed.

Then, that week I hear in the news “Heavy snow spoils Holiday plans in the West.” The lead of the story reads, “A key highway into Yellowstone is closed because parts of the road have seen more than 25 feet of snow” and Yellowstone had “just one campground open” (see photo of the Beartooth Highway, Northwest of Yellowstone Park). If I had gone on the trip, I wouldn’t have been able to see the park the way I wanted to because most of the park would have been closed. Reason No. 2 revealed.

Finally, last week I got a letter in the mail. It was from a media member who covers the NASCAR circuit. He had gotten together around 45 NASCAR industry members and put together a fund for me. He told me that “everyone deserves a rainbow now and then” and that my recent medical struggles and having to cancel my first real vacation in two years had touched them and they wanted to all make sure that when I was ready – healthy and strong – that they wanted me to take a trip of a lifetime to Yellowstone. I sat there and sobbed. I was so touched by everyone’s kindness and generosity. I couldn’t read that letter to my friends and family for days without crying. It was simply amazing and I was just blown away (I still am as I write this). And to be honest, after having to fix my AC unit, I wouldn’t have gone to Yellowstone next year, as the new AC unit cost triple the cost of the vacation. Now with this fund, I will go without a doubt and I couldn’t be more excited. Reason No. 3 revealed.

And to all of you who contributed, I am touched more than you will ever know. Thank you for your friendship all these years. The NASCAR circuit is just one big family and I am so thankful to be a part of it.

And for anyone who never believed that everything happens for a reason, I bet I’ve given you something to think about.

Love,
Marcy

P.S. – And a small update on the reconstruction process: I started the expanding for the THIRD time now on June 3. I expand every Friday from June 3 to July 1, with a plan of having the next surgery in late July where he will take the expander out and put an implant back. I guess since this is the second time we’ve expanded on the left side, it has actually been less painful than the first go around (Thankfully, a break!). The infection has stayed at bay, so the antibiotics seemed to have done their job. Keeping my fingers crossed it stays that way.

Mentally, I’ve been able to climb back out of that hole I was in and I’m feeling much better. I’m able to exercise again and start getting back into my old routines including yoga. I’m a big believer that time heals all wounds and it just took me a little longer than normal to bounce back. That was the most frustrating – knowing why I was upset, but just not able to move past it.

Not the Consolation Prize I Hoped For

I wasn’t in the best place after my last blog post. I was very down; my counselor said I wasn’t depressed, but what I was experiencing was grief and anger. That sounded about right to me. A week ago, I hit a breaking point, but after a ton of crying for a few days and a one hour massage, I felt a lot better. It’s hard trying to stay positive about getting to the finish line when the finish line keeps constantly shifting.

Cancelling the trip to Yellowstone was a huge disappointment, but on a positive note, Delta reimbursed me my miles with no penalty (should have been $150 per ticket) and Priceline refunded all but $40 of our non-refundable rental. Both companies got doctor’s notes, so I’m extremely thankful that they both were so understanding and compassionate. So I’m only out $92 for the trip instead of the over $600 I was expecting.

That’s good news because the $1,300 I had planned for Yellowstone is now going towards a new air conditioning unit and heat pump as when I got home from the All-Star race yesterday, the A/C was not working. I had wanted to buy myself a consolation prize for not being able to go on the trip, but this was not what I had planned. I’m going to be out $4,230 total, but at least they can fix it tomorrow. I’m staying with my next door neighbor (thanks Anne for putting me up last night and tonight), but I feel so bad for my kitties as all I can do for them is leave fans on in this 90 degree weather. I guess God works in mysterious ways – he must have known I’d need that Yellowstone money for this, or at least that’s what I’m believing to make me feel better about not being in Yellowstone as I type this.

Medically, things are looking up. I’m feeling better now I’m off that anti-biotic for almost a week now. I saw the infectious disease doctor this morning and he says everything looks good. He said the most critical time for an infection to recur is the first two weeks and tomorrow will be one week clear. He said they can flare back up months down the road; but we just won’t know. Only time will tell.

I start the expansion process on June 3. I’m not looking forward to it as this will be the third time I’ve gone through this and it is painful, usually having me in a pain for a couple of days following the procedure. I will expand every Friday in June and early July. At that point, we can set the next surgery date. I’m not looking forward to spending all my upcoming weekends in pain on the couch, but it is what it is. I’m just soldiering on the best I can.

As best I can tell, I’ve got at least two surgeries left, this next one in late July/early August and then one more three months after that. I know we’ll have some final touches, but I’m not sure how long I have to wait for those.

All I can hope for is in 2012 (I guess not 2011) that I can use all my vacation days for vacation!!!

Love to you all!
Marcy