Foob Decision

Foob indecision, I should say. My thoughts on the topic of breast reconstruction change daily. Some days, I feel like I’m done with all things related to breast cancer. Other days, though, I feel the need to finish this journey, and face reconstruction. It’s a difficult decision. I do not feel “incomplete” in any way. I feel strong and healthy, and I’m at a very happy point in my life. As I’ve said all along, I’m not a vain individual, so my physical appearance isn’t dictating what I do next. How I feel will dictate my next move. Deep down, I would like to complete the process.

Two years ago, I had a double mastectomy. One year ago, I had one implant removed due to infection. I am now living, lopsided, with one implant and one flat chest wall. Though I feel whole, the journey feels somehow incomplete. Every day, I have pain and tightness in my chest and ribs from scar tissue and radiation damage. The swelling in my arm from lymphedema is also a struggle. Inevitably, each time I see my doctors, they gesture at my partial reconstruction and the question comes up, “what are you going to do about that?”

To reconstruct or not to reconstruct, that is the question.

Honestly, I do not know the answer to that question. Like everything else along the way, I face several options, each with their own pros and cons. One, do nothing and live with one “foob” and one “not-foob”, swapping the prosthetic between bras and swimsuits as needed, or skipping it and going awkwardly foob-less. Two, remove the remaining implant and go flat and fabulous. Three, face additional reconstructive surgeries.

Avoiding surgery sounds nice, but would mean accepting a lifetime with a prosthesis, which, frankly, is a bit of a pain in the ass, and quite uncomfortable. It is awkward dealing with the prosthesis in the locker room or when I sleep at someone else’s house. I occasionally feel that my desire to avoid surgery is a cop-out based on fear of facing something difficult. Removing the current implant would be a relief. I do not like it. It feels uncomfortable, gets cold, and does not look very boob-like. Getting rid of it and going flat crosses my mind often, though then I may be stuck fumbling around with two prostheses, because I am not comfortable enough to go out in public without “something” there. Doing the surgeries to complete the reconstructive process does hold some appeal for me.

At this point in my life, I had wanted to be done with surgery. Between 2012-2015, I have had six surgeries . My kids were only 7 and 9 when they witnessed my first surgery. They have been there to help me recover from all six surgeries. I do not want their childhood memories dominated by pain, weakness, and their mom’s inability to keep up with them. We have already faced a lifetime of “I can’t do that.” How can I teach my children that they can do anything if I am constantly unable? I am also trying to teach my children to face fears and do difficult things to achieve the things that they want out of life. Can I encourage that if I’m avoiding this next step in my journey?

Do I want to have a normal appearance? Of course. But realistically, I lost that two years ago when I had the mastectomies. “Normal” will never be fully regained. Reconstruction can go a long way to give me a decent appearance while fully clothed, but that is not the same as getting my body back. My body will never be the same again. I am growing stronger, but I still have limitations from multiple surgeries, radiation and the effects of lymphedema. My priority is the ability to do activities with my children. If the surgery I am facing can relieve the lymphedema and restore strength I lost, then it may be worth facing that adversity.

Again, like art, I am a work in progress.

Bipolar Facebook Feed

gazingI have always loved travel. I dream of full time travel with my husband. I dream of “road-schooling” my children, broadening all of our horizons, and seeing the world. I have done a fair amount of travel, and I want to share this passion with my kids. My husband, Andrew Pain, has lived the dream (taking a year off to see North, Central and South America by motorcycle.) He currently writes and presents about leaving it all behind in order to travel.

Somewhere I get stuck, though, as I stay behind yet again. Here I sit as Andy travels to present on motorcycle travel. Last week to Horizon’s Unlimited, and this week to Overland Expo. He’ll have the opportunity to chat with amazing people who have taken the plunge to live boldly and explore the world in ways that many only dream of. I don’t blame Andy for leaving me behind-he always wants me to join him. He even offers to stay home with me. Why should we both miss these opportunities? It gets harder and harder for him to leave each time, but I encourage him to go. Despite my encouragement, it’s painful to let him go. Watching him drive away dredges up difficult memories of his trip in 2014, when I was going through chemo and too weak to travel with him. I hate allowing health problems  to impose limitations on me.

Again this year, health issues are forcing me to stay behind. This has been a particularly challenging month, fighting off sickness, pain and lymphedema. The ups and downs in my life are reflected back at me as I browse through my Facebook feed. I think my Facebook feed is becoming Bipolar. On one hand, I am a member of the club that no one wants to join-Breast Cancer fighters/survivors. I’m involved in a number of groups, and these feeds are full of small triumphs, as well as devastating heartbreaks. I often have tears in my eyes when I read the things so many young women are struggling through. On the other hand, I am also a member in a number of motorcycle and travel groups filled with stories of adventure and world travel. Their tales put a fire in me and I dream of adventure. I feel like my Cancer ordeal is over, and I’m ready to move forward to live boldly, yet it always seems some new roadblock comes my way, halting me in my tracks.

This week has been depressing to me. All my hard work re-defining my life after cancer took a hit. I am not feeling well. I’ve had several doctor’s appointments, face difficult decisions and the ever-present fear of recurrence. The lymphedema in my right arm has progressed to the point where it is effecting the quality of my life. I learned of a surgery that can help reduce swelling so I went for a consultation with a surgeon at the University of Chicago who does microsurgery called Lymph Node Bypass. Coming out of the consultation, I had more questions than I did going in. He recommends not only the Bypass, but also a very difficult and invasive form of breast reconstruction called DIEP Flap, claiming that the full surgery will give me better success against the lymphedema. More on that in a future post, but in a nutshell, it involves cutting from hip to hip and using all of that fat, skin, and tissue to reconstruct the breast. He can take the lymph nodes at the same time and move them to the area where mine were removed. I had previously decided against reconstruction  because I don’t want another long recovery slowing me down, but now I’m unsure.

Also, this week, I am back at the cardiologist’s office. I started having an irregular heartbeat a couple weeks ago, to the extent that it was keeping me up at night. I am experiencing shortness of breath-disconcerting because I am in really good shape otherwise. Lately, I feel like I felt after treatment, weak and fatigued. It’s impossible for a cancer survivor to stop fears of metastatic disease from creeping into the imagination. The cardiologist had me wear a Holter Monitor and did blood work to determine if I was in heart failure (I’m NOT) – yay! Why heart failure, you ask, in a young (-ish) triathlete? Chemo and radiation can damage the heart. So here we go with more tests. I have a heart echocardiogram tomorrow. If the cardiologist finds nothing wrong with my heart, then we look to my lungs, with fear of mets heavily on my mind.

This is not my plan. My plan is to travel the world with my family. I’m a newlywed and excited about our future. I’m super thrilled about our upcoming “family-moon” to Alaska this summer. Just today, I was reading about a family of four that is traveling the world and homeschooling. They will be at the Overland Expo where Andy is presenting on motorcycle travel. Overland Expo-where I am not going to be because I have too many doctor’s appointments. I would have liked the chance to sit and learn about their experiences. This is my dream. How do I attain this dream when I am trapped in a world of hospitals, medical tests, surgeries, and side effects. I want it all behind me, but it just keeps tripping me up. I refuse to let cancer dictate how I live my life. But how?

It all makes me feel a bit Bipolar. Depressed about my health one minute, manic about upcoming trips and a life fully lived the next. I feel a little jealous of those at Overland Expo this week. Those who have found a way to ditch it all and live their dreams of traveling and experiencing the world. Clearly, we all have obstacles and fears to overcome. Life is not easy for anyone. Unfortunately, my obstacles keep pulling me down when all I really want to do is fly. How does one get past that?

Living with NED, Marrying Pain

Time flies. Thank goodness, because I don’t like the alternative. I just realized that I have not updated my blog in a long time. I had not intended to stop writing altogether. Rather, my focus has been on starting a new chapter in my life, closing the book on the impact that cancer had in my life. Cancer treatment, for me, is becoming a fading memory. Lessons have been learned. Changes have been made. Priorities have re-ordered themselves.

Part of being a cancer survivor involves the fear that the cancer will come back. Each new pain or symptom is cause for more tests. This fall has been filled with tests for me, ranging from a lumbar puncture, brain MRI, cervical spine MRI, and a colonoscopy. It has also been an emotional fall filled with the struggles of friends enduring the setbacks and recurrences of cancer.

One thing I’ve learned along the way is that there is no point in stressing about the tests until all the results are in. A quote from the movie, “Bridge of Spies” resonates with me. The attorney often asked the man suspected of being a spy if he was worried. The man always calmly stated, “would it help?” Nope. Worrying doesn’t help and stress is bad. My goal is to get passed the fear to get to what’s good and positive in life.

I’m happy to say that, after all the test results are in, I am still living with NED (No Evidence of Disease). I love it, and plan to keep NED around for a good, long time.

So many positive things have happened for me over the summer. I am so thankful for the opportunity to slow down and savor the positive. I spent a great deal of time re-claiming my health with the amazing women who are Team Phoenix, culminating in my first Sprint Triathlon, and lifelong friendships. I also purchase a beautiful home with my boyfriend. We had time at the lake, camping trips, motorcycle rides. I’m feeling great and looking forward to many more adventures with my family.

I am also happy to announce that I will be marrying Andy Pain, my partner in all things, on January 1st, 2016. This makes me so happy. Andy has been with me through the best and worst moments of my life, with never-ending love and support, adventure (and kitten videos). I can’t imagine a better person to spend my life with.  I can’t imagine a better way to ring in the New Year than, “Living with NED, Marrying Pain”.

Suzandy

Cancerversary

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One year ago today, I heard the words, “you have breast cancer”, forever changing my life and challenging my limits over the course of the year. I’ll never forget that day. My time on this planet became more precious that day, and 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’ll count this year, and 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. 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.

The details from that day one year ago are as clear today as they were then. I left the doctor’s office knowing that it was not going to be good news when the doctor called me with the results of the biopsy. Too much about the appointment pointed to bad news. I was there for nearly three hours, getting images and more images; a second look, a third look. The way the doctor shook my hand when he came in the room was the way you shake hands at a funeral, with a deep empathy in his eyes. He held the nurse back from her lunch break so that we could do the biopsy right then and there, rather than scheduling for another day. As we were finishing up, the doctor said, “It doesn’t look good, but I’ve been wrong before”. Not a terribly reassuring statement, I left the appointment knowing what I had already suspected.

I expected the doctor’s call late in the afternoon, so Andy took me out to lunch to pass the time and keep my mind busy with something else. The doctor called earlier than I expected, so I barely heard the words over the din of the lunch crowd. His words confirmed the cancer. I shouldn’t have been shocked, I already knew in my gut what the doctor was going to say, but actually hearing it verbalized was a tough blow. I was thankful that Andy was there to hug me and reassure me, as he would come to do frequently over the course of the year. On the ride home, another call came in, this time from my primary care physician, with her referral to a breast surgeon, who she swore she would go to had it been her diagnosis. And, thus began the wild ride of tests, surgeries, and cancer treatment that would dominate my life for a year.

One year has passed. So much has changed. Reflecting back on why it seemed to be such a busy year, I started counting up Doctor’s appointment, which then lead me to review medicals bills. Then, for some reason, those credit card commercials with the “Priceless” theme popped into my head, (some things, money can’t buy. For everything else…).

Cancer Treatment = One year, 177 appointments, 3 hospitals, 2 surgeries, chemotherapy, radiation, hormone therapy
Medical Bills = $646,474 and counting (thank God for good health insurance)
Time lost to sickness, side effects, and recovery = 1 year
Being a Cancer Survivor = Priceless

New Year, New Chapter

New Year, New Chapter

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Goodbye 2014. You taught me a lot. I learned to get beyond my personal limitations. I learned to see the important things and set aside the unimportant or harmful. The highs were higher, and the lows were lower. I learned that I am stronger than I thought, and I learned that I am weaker than I thought, too. Everything was simply MORE. Than usual. Of course, that could just be my perspective, having had a look into the face of my own mortality.

Early in the year, when this journey still held so much of the unknown, I was not sure I would live to see another year. Dreams put off would be forever lost. Fears of leaving my young children behind were prescient. Regrets for not getting to the doctor earlier would never change the path for me, no matter how much I wanted it to change. I simply had to follow this path, one day at a time, trusting that the doctors would get me through to see another year.

What a difference a year makes. 2014 was the first year in a long time that I didn’t work myself into the ground, physically, putting off healthy habits in exchange for the need to work. Hard. Cancer was my rude wake up call. I was forced to turn my focus to reclaiming my health, whatever that took. Reclaiming healthy habits needed to be my number one priority. I made it. I am now at the conclusion of my active treatment against cancer. I can say that I am a cancer survivor, currently living with No Evidence of Disease. Now, on this first day of a new year, I am shifting my reflections towards the next chapter.

This New Year’s holds a different significance for me. I’m not one to make resolutions (that we all know won’t be kept). But I will take the opportunity to symbolically close a tough chapter, a chance to start a whole new chapter. I admit that I feel a bit lost and not sure what this new chapter will entail. I do know that I want to embrace it, and live life as fully as I can, not putting off dreams anymore to a future that may or may not come, not letting fears or hang-ups stop me. I want to find a bigger purpose for my life, a way to give back, to help other women who are facing this journey.

Andy and I have been brainstorming a lot about ways to raise funds for the programs that helped me along the way. There seem to be a lot of resources and support for women who are actively undergoing treatment, but at the end of the day, when treatment is done, lots of women are left feeling lost, depressed, suffering from PTSD and facing fears of recurrence. Most of the foundations raising funds for Breast Cancer have a strong focus on awareness, early detection, self exams and regular mammograms. That did not help me. I did not detect my cancer early. My regular mammograms did not detect my cancer at all. I never knew that there was a type of breast cancer that was not found by mammography. If I had waited until my next mammogram, I might not be here today to start this new chapter.  With this New Year, I received the gift of a second chance. I hope to make it a great one!

Happy 2015.