The Effect of Love

Someone asked me recently, "How are you changed by loving others?" Great question and it didn't take me long to reply. I am forever changed by the people I love in more ways than I can count. One year ago, I would have said that I am changed by the people I love for different reasons however. We always have the opportunity to grow, develop more empathy and to understand sacrifice, when we love others. Last June, when I was diagnosed with synovial sarcoma, I was shown directly how my love for others would help me grow in ways I never imagined. 

I was advised by my medical team, to have a right leg, below the knee amputation. I knew that I could go against their medical advice, so I poured over research, spoke with my children and close family, and ultimately made the decision to have the amputation. I love my children more than anything, so much so, that I knew that I needed to have this surgery, more for them than for me. When you love others, you know that sometimes you need to sacrifice. I knew that my best chance for long term survival was to amputate, and I want to be around to watch my children graduate high school, and to watch them grow into adults. I also knew that if I didn’t have the surgery, they would worry and so, the decision to amputate became easier.

So here I am, a cancer survivor (thriving) and an amputee. I am in two distinct clubs now, one for cancer and one for amputees and it is an interesting journey filled with love, tears, hugs, kindness, fear, joy and hope. I had the amputation surgery seven weeks ago today (Wow, time flies!). My love for my children and family has been the light that guides my way. My love for them allowed me the opportunity to not just live for  myself, but to live, thrive, and hopefully inspire others along the way. My love for them kept me going on tough days and was the only thing I was thinking about as I was being hooked up to chemo, and being rolled into the operating room. We often think it is other people loving us that gives us strength, but our love for others gives us courage we never thought possible. I also had to find courage and grace to allow some family and friends to distance themselves from me, as they were in too much pain with what I was going through. I am stronger today because I am forever changed by the people I love.

How have you been changed by the people you love?
 

Purpose

  I have a lot of time to think, oodles of time. I contemplate life and my purpose. A purpose centered life seems to be one in which we are in direct alignment with source (GOD). Often we don't think about our purpose. We stay busy, taking care of kids, running to work, scheduling a night out with friends, and fitting in a work out or a hobby. I know that I was running on fast forward before my cancer diagnosis, even though I would have probably said otherwise. Time now seems to stand still  at times, allowing me to truly reflect on my past, my present and my future. Mostly though, my cancer diagnosis has allowed me to be fully present in the now. My body, my spirit and my emotions have all been shaken up and now they all must align.
    How can I begin to express how I feel about losing a limb. Unlike a tragic accident, where you wake up in the hospital and you are forced to deal with an amputation, I have had months to process that I will be losing my right foot in a below the knee amputation on January 9th. How does one wrap their head around that? I also cannot imagine the sudden loss of a limb in an accident and that journey also comes with loss, change and new beginnings.
    My journey began with a cancer diagnosis of synovial sarcoma, this past June. My emotions could only handle so much at the time, so even though I knew an amputation was probably in my future, I needed to contend with four rounds of intensive chemotherapy first. Now that I am over that hurdle, I can attempt to prepare for the amputation surgery.
    I watch people running around shopping, doing after Christmas returns, while preparing for New Year's eve. I wish for a moment that everyone could stop and connect for one minute into the life of someone battling cancer, or feel the pain of losing a home in a wildfire, or feel the overwhelming sadness of someone who has lost a loved one. In the world I find myself in now, filled with hospitals, a cancer support group, doctor offices and scans, I am now surrounded by fellow travelers in the cancer fight. We all are fighting hard, but we are not just surviving, we are thriving.
    As you all reflect on your past year....and as you make your New Year's eve plans and set your goals for the new year, do not forget that life itself is a gift. Each day is a new opportunity to begin anew, to forgive, to reach out and help someone, and to remember that we grow in connection to each other. Of course we enjoy the celebrations like the New Years eve parties, but life itself is pain and joy and everything in between, and all of it is worth celebrating.
    Life can be hard at times, but it is also filled with simple joys of a hug, laughter, enjoying a sunset, or time spent with family and friends. The simple things are the things that fill my heart now. People marvel at my strength, but I cannot imagine being any other way. Yes, I have cancer. Yes, I will have a below the knee amputation in less than two weeks. Yes, my cancer journey is far from over. However, Cancer does not define me, nor will the amputation.
    I am still me, and I can tell you that I continue every day to grow into a far better version of myself. Adversity challenges us to rise up, develop courage you never thought you had and to forge forward with the strength of a tiger. If you are struggling and you have lost your way, borrow the strength of others like myself and remember that adversity is all a matter of perspective. The things that I use to worry about are no longer concerning to me. Now, I think about learning to walk again with a prosthesis, and looking forward to hiking and driving with my new leg. Whatever your challenges are, know that you too can find strength and courage lying quietly within, waiting to be discovered. Reach out and offer support to someone struggling, since helping others not only helps the receiver but helps the giver as well. Marvel at life's small and simple pleasures. Most of all, live each day with the excitement and hope that New Year's eve offers, knowing that anything is possible.

Article in the Acorn (October 2017)

Article in the Acorn

Today is a Gift

My life will never be the same. My days may be filled with errands and kids but my thoughts always drift back to cancer. Quesions swirl in my head. Will I get to watch my kids graduate High School? Please GOD, I want to raise my babies into adulthood, please. Will I get to be at their college graduations, their weddings, hold my grandbabies one day? If I am one of the lucky ones and I am fortunate enough to live, I pledge that no day will ever be wasted. I know that each day I am here, I have a mission to make a difference. Sometimes its to make my children smile. Other times, its to help a stranger. The other day, a woman approached me in Panera to discuss chemo, because she saw that I have no hair. We talked for awhile and she has stage 4 lung cancer. She knows her cancer has spread, but they want to do chemo to slow it down and she is having some hesitation. I hope I helped her in some small way. Every day, we can make a difference. If you are reading this, imagine receiving a diagnosis that changes your life. No matter how many scans that I have that are clear, each scan will give me anxiety because I'll know that its always a possibility that this cancer can come back and spread. Each clean scan will bring a smile, but each day will still be a blessing. Until I'm in my 80's, I will feel this way, and even then, each day will still count. I thought that I was pretty grateful for living before, but now, I am super grateful. I am grateful for my cup of coffee in the morning, I'm grateful that my taste buds are coming back, I'm grateful for my friends and family, grateful for the support of strangers, and of course incredibly grateful to have my kids. Every day, I'm filled with gratitude, and if I can remind folks that living is truly a gift, more people might value what they have, instead of focusing on what they don't have. I am grateful for this journey and every day is a gift.

Hardest Hike

Once I was diagnosed with Synovial Sarcoma this past June, I began the hardest trail of my life. The trail began with multiple doctor appointments including a PET scan, which scans your entire body for tumors. I had to sort through medical information about this rare cancer and then I had to prepare for chemo. How do you really prepare for chemo? I prepared by getting myself emotionally ready and then I also made sure to eat well and get plenty of sleep. I also had my Power Port surgery, the day before chemo started. The port is inserted during a minor day surgery. I felt pretty sick afterwords, because the anesthesia tripped a migraine.

I went into round one rested for sure. Then the hike began when round one started. Round one consisted of 6 days in the hospital, being hooked up to IV chemo drip 24 hours a day. They call the chemo regimen AIM for short. The AIM cocktail is tough and by day 3, I was affected with a host of side effects, even though they do their best to administer drugs to counter side effects. Who knows, maybe some of the symptoms I was feeling were side effects from the side effects drugs. The drugs they gave me automatically to counter side effects were anti-nausea drugs (several types), steroids, laxatives, stool softeners, and Mensa. I also had my migraines tripped during chemo round one, so I added my migraine meds to the mix. Then, they gave me Ativan to help counter the effects of the steroids. That didn't work. While Ativan did make me drowsy, It also made me hallucinate. I marked that drug off of my list as a drug of choice. They also gave me other things, I just couldn't keep track. I ended round one feeling pretty crappy, and went home to rest up. I call my port "Diana," in honor of Wonder Woman. I'm trying to approach this with the strength of Wonder Woman, with grace and determination.

Once I got home from round one, it was pretty apparent that I was sleep deprived. The first thing I had to do was catch up on my sleep. The hospital is not the place to get rest. I was woken up at all hours in the night and they continued to monitor my urine output as well as take urine samples every 4 hours. I had a tough time drinking coffee, because my esophagi was burned. I would experience pressure in my chest and an amped up feeling, then extreme weakness and fatigue. I was too weak to drive during those first two weeks post chemo one. At around day 5 after chemo one, I began to get the chills and then a fever. Within 24 hours, I couldn't keep anything down and I had a fever of 102. To make matters worse, I also had a terrible migraine. By 2pm, I called 911 and was taken to my local hospital by ambulance. I was treated for a possible infection and it took two full days until they could stop the nausea. They couldn't stop the migraines, so I had 24/7 migraines for the 6 days I was in the hospital. They gave me migraine medicine, but the medicine would only last a few hours. Then they'd have to give me other pain meds to attempt pain management. It wasn't successful. I was mostly in pain during my 6 day stay. My white blood count was at a low at .1 when I was admitted to the hospital, so my immune system was vulnerable. I was at my Nadir on admission (when white blood count is at its lowest), and they believe I had Neutropenic fever. This can be very dangerous, and it was a good thing I had gone to the hospital when I did.

Then it was time to recover and rest after the second hospitalization. The doctor gave me 2 weeks until round two of chemo, so that I could rest up. This reprieve was the nicest time. I finally could get my strength back, catch up on sleep and feel semi normal. After about a week catching up on needed sleep, I did start to have normal hours, when I could feel like myself again. It was nice for my kids to see me have some normal moments. I went to the beach with a friend and we sat in beach chairs after having a nice lunch, and it was one of the most normal days that I had during that time period. I watched my nutrition and spent time with my kids, then I was as ready as I could be for round two.

Round two started August 29th. I was more prepared this time and I knew whet to expect. The hardest thing is being in the hospital for 6 days. This time, I discovered an outdoor patio, which I could access with my IV roller. I requested benadryl to sleep instead of the hard core drugs they gave me last time which helped a lot. My dad stayed with me this time, which helped. It gets very boring the hospital, real quick. The effects of chemo were the same as last time, fatigue, chemo brain (confusion), chest pressure, and difficulty sleeping.

After round two, I also knew what to expect. Catching up on sleep is always paramount after being in the hospital. I ended up with really bad nausea again and wasn't keeping anything down. Fortunately this time the doctor prescribed a stronger anti-nausea drug, a suppository. Hey, desperate times, call for desperate measures! I also had a low grade fever, but I kept an eye on it. My energy was low and I had difficulty sleeping, but Benedryl would work in a pinch. My taste buds have been effected since the start of chemo, and most foods just don't taste right. After round two of chemo, I couldn't taste sugars, but I could taste salts. Its the strangest thing, to look at a piece of chocolate cake, know what it will taste like, and the take a bite and it taste nothing like it should. Its the biggest let down. I've been able to avoid a repeat hospitalization, but I've had symptoms come and go.

Now the emotional factor. How has all of this affected me and my family? Its been very tough. I think chemotherapy is archaic. I feel like there has to be better treatment for cancer, yet many of us are stuck with chemo and radiation. These solutions cause harm, lots of it, yet of course they can also help increase my odds for survival. The hard part is that chemo and all of the drugs given to help counter the side effects cause harm to healthy cells. The emotional part is that chemotherapy can be traumatic. I honestly felt traumatized after and during each round of chemo. My kids hated having me gone for 6 days (for each hospitalization). I was in the hospital for 18 days over the past 6 weeks. My kids have struggled emotionally, which is understandable. We started attending groups at Cancer Support Community, and we'll start some family counseling. I hope that anyone who goes through this understands the emotional impact. I was never asked during any of my hospitalizations, if I needed someone to talk to, yet I was asked if I wanted any type of drug and given a craft if I was feeling bored or creative.

I hope that writing about my experiences can assist someone else going through it. My advice: advocate for yourself! Have a family member call doctors offices, get records, book appointments etc. My older sister Christine has been a terrific advocate. Also, Inform yourself! Educate yourself about the treatment, the drugs and pull your medical records, because things have often been documented incorrectly. Get support! Join a cancer support group, join Facebook groups with similar diagnosis, seek a therapist and talk or write about how you are feeling. My daughter writes songs about her feelings, I blog and talk with friends. Always get support!

My hardest hike is far from over. I meet with my oncologist this week to discuss a third round of chemo. I also have a PET scan this month and then the below the knee amputation to discuss and schedule once chemo is done. This trail is difficult and rocky, and I don't know what to expect, except that I know I have the strength to persevere. Nothing is impossible, when you have hope as your fuel.

#SynovialSarcoma #cancerfight #cancersurvivor

Saranac Lake

Pre-chemo Retreat to Adirondacks article

The Sanctuary

The kids and I flew into Newark yesterday, ready for a week away prior to the start of chemo. The house I rented on the lake was a home I found on the internet. Usually, we stay at condo on lower Saranac Lake that is a part of a large rental property, run very much like a hotel. I had decided back in early June, before my diagnosis, that we needed something cozier, so I had inquired about this rental. Then, my life turned upside down and for awhile, I wasn't sure I'd be able to get away and I wondered momentarily if I should perhaps be more conservative with finances. I told the home owner that I would have to talk to my doctors, to see if I could get away, and he was gracious enough to say he would not rent it to anyone else until he heard from me. In fact, after he heard about my illness, he disclosed that he is a pastor at his church and he e-mailed me that he and his congregation at their lovely lake church started praying for me. A sign from god? I'd like to think so. I knew then that his house was perfect for our get a way, and as soon as the doctor confirmed we could go, I was super happy to let him know that the Burke family would be staying in his home. We arrived last night, after a very long day of driving from Newark airport. After a red-eye flight, we all felt a little delirious. We stopped on the way and had lunch with three of my good friends from Social Work school. I had not seen them in 4 years, and it felt like not a single day had passed. Once again, cancer seems to have brought people back together and for that I am truly grateful. I know that the kids and I need oodles of support and every hug, smile and gathering, feels like god is reaffirming that we are not alone. 

We arrived in Saranac Lake just before dark and the Pastor's home is located on upper Saranac Lake. Once you make the right turn off of the main route, it's 2.2 miles of a concrete then dirt road to what looks like heaven to me. We are in a private association with 40 something homes hidden throughout the woods and lake, but honestly, it feels like we have the lake to ourselves out here. The pastor and his adult daughter greeted us and showed us around. Austin absolutely lit up when he saw the hot tub, in the enclosed porch. I did too! There is a ping pong table in the basement. I have to say, the musty basement smell actually floods me with memories of visiting my grandparents in Walkerton, Indiana when I was a kid. In fact, the wonderful thing about this home, is I feel like I'm at grandma's house. From the crotchet blankets, homemade quilts, antique knick knacks, 40+ bottles of mens cologne and women's perfume on the dresser (because clearly grandkids didn't know what else to get them as gifts) and many other wonderful reminders of someone's home, built with love and care. The pastor also had frozen pizza's for us, and even left me coffee and wine. Bless him. The pastor's wife passed away this past April at 82. He told me that she had a heart condition that began when she was 8 years old, and that she was quite sick toward the end. I offered my condolences and he smiled, telling me that she had lived a long and good life. I felt as if he is happy that a family in need of sanctuary is staying in his home, and I'm sure his wife is smiling from heaven that we are here. 

I feel incredibly comforted that my kids and I will be taken care of through all that we will be going through. From renting this perfect home from a pastor who welcomed us with open arms and is praying for us, to countless of friends, family and new friends, all reaching out to help us any way they can. Maybe that is a part of my lesson in all of this. For so long, I felt as if I had to do everything on my own, yet I would council others that they need support, especially through difficult times. I know we need help and I know we cannot do this alone. More than anything, I feel vulnerable as a mother, knowing that I have been my children's sole support. Once I received the diagnosis, I panicked for many reasons, but mostly because I'm suppose to protect and care for them, but how can I do that when I am going through the most difficult time in my life? Then in ran the village, reminding me, that others will step in to help my kids, when I cannot. I am not as afraid, and I feel more at peace as I head into the unknown. 

For now, I get to enjoy this sanctuary on the lake. We all actually slept in today, and its raining, a perfect day to do nothing. 

#SynovialSarcoma