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?

Book Launch Event

I am thrilled to announce that I have turned this blog into a printed book. In addition to my book, my husband, Andrew Pain, has written a book about his experiences as a “caregiver” on the sidelines during my cancer treatment. Both books are now available for pre-order, and there will be an event on May 6th at 7:00 at our favorite local coffee shop. Please join us for coffee, discussion and a chance to have your books signed.

Beta Readers wanted!

Beta Readers wanted!

OneKnight'sJourney_MEDIUMI’m excited to announce that I am turning this blog into a book! Over the course of this journey through cancer treatment, I’ve had requests to turn my blog into a book, so I have decided to do just that. I hope to inspire other women to discover ways of embracing the positive moments along the way and allow love and humor to be the armor that protects them through the tough stuff.

I have a rough draft nearly ready, so I am looking for 8-10 people to read a pdf of my book and provide me with feedback, comments and questions. If you are willing to be a beta reader for me, please e-mail me at 1knightsjourney@gmail.com and I will send you a pdf, along with additional instructions.

As an added incentive, I will send a free, signed copy of One Knight’s Journey to the beta readers as soon as it is printed. Also, if you further help me out by writing an amazon review, you will also receive a signed, printed copy of “Sidelines”, the book written by my husband about his experiences being by my side through cancer treatment.

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Thanks!

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

Team Phoenix

I have been so fortunate to have spent the past 14 weeks training side by side with the remarkable group of cancer survivors that is Team Phoenix 2015.  We were thrown together this spring by the common bond of a battle we did not choose.  We started out with a degree of uncertainty, not knowing what to expect from Team Phoenix.  Somehow, they believe that they could transform us into triathletes, even after the hardships our bodies had faced due to surgery, chemotherapy and radiation.

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As time went on, and we grew stronger, it was clear that Team Phoenix was changing our lives.  We were in charge of our next battle.  We were going to take control of our healing.  We were going to swim, bike and run across that finish line.  The support and encouragement is unlike anything I have experience before in my life.  The dedication of the coaches, sponsors, medical staff, and volunteers is amazing.  I have learned so much.  I have pushed beyond fears and perceived limitations.  I have become strong, proud, alive and re-defined!!!

Sunday, August 9th, our group of 47 women will swim 1/2 mile, bike 12 miles, and run 3 miles in one big victory lap.  We are in charge of our health!  Please consider making a donation to Team Phoenix so that many more women can take control and experience cancer survivorship re-defined!  Come cheer us on at the Pleasant Prairie RecPlex, August 9th at 7am.  Wear purple!!

Funky Lymphedema

Funky Lymphedema

Lymphedema is… I don’t even know what to call it…so, funky lymphedema it is. In a nutshell, it is a painful accumulation of fluid in an extremity, and it is incurable. You may recall hearing about it in the news recently, when Kathy Bates became an advocate for people suffering with lymphedema. When I first heard about lymphedema early on in this journey, it was one of the things I actually feared most. The symptoms of lymphedema include painful swelling, skin changes, heaviness, and fatigue in the affected limb. My fear was that this condition would prevent me from doing the things that I love most. Despite my fears, I started experiencing the symptoms of lymphedema back in January, as a result of the skin infection (cellulitis) I developed in the area of my surgical scar.

There are a number of reasons why women battling breast cancer develop lymphedema. I have a combination of all of the causes, so, to say that I was at high risk for developing lymphedema is an understatement. It can result from mastectomy surgery, especially if lymph nodes are removed. Radiation targeted at the remaining nodes does further damage to the lymphatic system. Finally, infection to the area with the compromised lymphatic system can be very difficult to clear from the affected extremity. Naturally, having ticked all of these conditions off my list, I was primed to develop lymphedema.

The purpose of the lymph nodes is to filter proteins and fluids from the lymphatic system. When the damaged (or absent) lymph nodes can’t keep up with this function, the result is fluid buildup in the extremity, in my case, my right arm. My arm was slowly puffing up like a water balloon. My kids found it entertaining to press on my arm and watch the indentation of their fingerprints linger for several minutes. An oddity, yes, but I was not amused. Mainly because simply lifting my arm left me feeling like I had done a hundred reps with heavy weights. And the pain of axillary web syndrome also returned to my arm.

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The only way to reduce the swelling has involved ongoing physical therapy over the past two months to try to reduce the swelling and return my arm to its normal size and strength, as well as daily wrapping to prevent additional fluid from accumulating. I was doing pretty well. With the help of the lymphapress (think of a sleeve with about 8 air chambers that fill with air in sequence to squeeze the excess fluid into my veins where it can be carried out of my arm), my arm was returning to normal, and feeling better.

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With months of physical therapy, my arm was almost back to normal, when a miniscule scratch turned into full blown cellulitis. I caught it early and was put right back on the antibiotics. After a 10 day course of antibiotics, it cleared up, but as soon as I went off the antibiotics, I developed another area of cellulitis on my forearm, completely out of the blue. So, back on antibiotics. Once again, after my latest surgery, I am facing more pain and swelling in my arm.

Sadly, there is no cure for lymphedema. I will forever have to protect my arm. I have to avoid scratches, bites, blisters, sunburn, etc. to my arms. I will forever have to wear a compression garment, wrap my arm when swelling begins, and carry antibiotics. I will forever have to face questions such as, “what did you do to your arm?” I’m still working out how to answer those questions. I didn’t DO anything to my arm. On second thought, maybe I did. It’s the small sacrifice I made to rid cancer from my body.

What I have learned in the last few months trying to control the lymphedema, is that I don’t have to fear it. I will not allow it to prevent me from doing to things that I love. It’s just one more reminder that I need to remain diligent and make my health a primary focus. I need to work a little harder now to grow strong, and implement healthier choices into my life. I feel assured that the more active and stronger I become, the easier it will be to control the lymphedema.

Hair Raising

Literally.  Watching hair grow.

Because I had too much time on my hands last year, and not much energy, I started taking daily selfies.  Watch time fly and hair grow as I document the rapid changes that took place over the past year of cancer treatment.  When I first knew I would lose my hair, I let my kids cut it short and we donated the ponytails.  Then we added some color.  Soon the razor came out, and it was gone.  Next, a fabulous Henna Tattoo.  And, finally, one day in July, chemotherapy was over, and the long slow process of raising hair began.