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 

Our Escape

Every part of my body is sore right now. This has very little to do with the cancer and everything to do with being on my feet 12 hours a day over the past week at camp. My right foot, the one that had the tumor removed surgically on May 31st, was hurting on and off. That is to be expected. Parts of my foot are still numb from the surgery however. I know that many loved ones are having a tough time with my two part plan, chemo and then right foot - below the knee amputation. I have read many articles about this and the reality is, there is still cancer in my right foot. My tumor was 5.6cm and removed improperly. Once you tamper with Synovial Sarcoma, cells go rogue. Besides that, the original source of the cancer is my right foot, and tumors often reoccur in the original site. I don't like the sound of an amputation either, but I have been preparing myself for that very likely outcome, ever since I was given this diagnosis. Once you've been given a diagnosis like mine, you look at everything very differently. My world will never be the same. All I can do is embrace everything I am to learn, experience and teach others about this process, otherwise I drown in despair. 

Camp is over and now the kids and I need a little rest and relaxation together before chemo starts. We are flying out tonight to the east coast, heading to Saranac Lake, New York. Perhaps if I was being rational, I'd save the money but suddenly, spending a week with my kids in a place that we go to every summer, seems like the most rational thing to do. Saranac Lake is our sanctuary, a place filled with memories and it allows us a temporary escape from the insanity we are facing when we return. Ironically, Saranac Lake and the Adirondacks was introduced to me 26 years ago, when I was hired to be the camp counselor/nanny for a family at their summer lake house. The grandmother who hired me, had cancer, and she wanted me to entertain her grandchildren, so that their summer could be filled with fun. I worked for them for 5 years and spent five summers hiking, swimming and canoeing with her grandchildren, and I did my best to make sure the grandchildren had the time of their lives. The grandmother eventually passed away during those five years, but she taught me the importance of making sure the children had traditions and fun, especially when life gets hard. In a twist of fate, I now head to Saranac Lake with my own children, to swim, hike, play cards, and have ice cream at our favorite ice cream stand. I know we cannot escape the reality of our situation and we all know it exists, no matter how much we want to forget. My kids cry randomly, and they tell me they're scared when nobody else is around, so the reality of what is going on in their world is not escaping them. Sometimes though, we need healthy distractions to put some wind in our sails when we need it most, to help us feel like all things are possible.   

Next Step

This week has been far better than the previous weeks. The shock has settled into an adjusted reality, but my new reality is still something I can't quite wrap my head around. When you hear the news that you have a rare cancer called Synovial Carcoma, one I had never heard of before, you cannot quite understand what lies ahead. The first morning after my last camp session was especially hard. I was very glad to sleep in, but when I woke up without many distractions and with no camp to head to, emotions started to engulf me. I needed to sift through things and I spent all of last weekend feeling the enormity of the situation I find myself in. Last Monday, I turned the corner and the emotional abyss I had been in, turned into more of a manageable climb. I can do this right!?? Yes! It also helped that friends kept me socializing, instead of allowing me to wallow. Drowning in self pity never really helps anyone, LOL. I know this all too well, so it was time to take my own advice. I enjoyed a spa day with very dear friends of mine from college and a dinner out with two other wonderful friends. We also enjoyed the 4th at another friends home, and I truly enjoyed watching the fireworks, something I have taken for granted for years. I'm catching up with friends from my past and present, and that part of this journey has been good for my soul. My week continued to improve and now I'm back in camp mode, as we prepare for our second session of Camp Conejo 2017.

The other part of this is the waiting game. Although I met with the quarterback of my medical team, Dr. Eilber, we had been waiting for the insurance authorization so that I could see his medical team. My sister Christine, kept applying pressure via phone calls, until the authorization came through. My next two appointments are very important. I will be seeing the Oncologist on Dr. Eilber's team on Monday afternoon. After that appointment, I'll be heading across town to see the other team member of Dr. Eilbers crew, the orthopedic surgeon. I will have a much clearer idea of when chemotherapy will start, once I meet with Dr. Singh, the Oncologist. Although I was initially a bit scared about chemo, I'm anxious for it to start. I know chemo is my best chance of attacking the rogue cancer cells in my body. 

I appreciate everyone reaching out, sending prayers and offering help of any kind. Patricia Williams has created a link on TakeThemaMeal.com and people will be able to drop off meals or send meal gift cards to help my kids and I, while I am receiving treatments. The generosity and kindness I have received brings me to tears and I am eternally grateful for all of the support we have been given and offered. Garrett, Taylor and Austin are doing well throughout the past several weeks. They have been busy with camp, and they are remaining very optimistic and hopeful. We hug a lot, and tell each other how much we love each other more times a day than I can count. Love and hugs will get me through! 

The Road Ahead

I know that this is how a crisis or tragedy works. You think your life is heading in one direction and in one split second, you are pushed onto another road. You have no say in it, you don't recognize the surroundings and you just have to forge ahead on the only path that is now open to you. Sure, we all want to go back, to the old, familiar path that seemed comfortable and predictable, but that path has disappeared. Even though I catch glimpses of my old life, everything looks and feels different now. Even when I was running camp last week, my 6th summer doing so, I approached it with a new set of eyes. My recent diagnosis of Synovial Sarcoma has certainly pushed me onto a new road. I'm now facing the fact that chemo will start in a few weeks, and I will not be able to return back to work as a school based social worker in the fall. I love working with teens, but now my journey is navigating me into the unknown. I will let my employer know soon, that I will be taking a leave of absence. I feel badly that I will not be there for some of the students, but crisis has entered my life and now the healer needs healing.

I feel badly that I cannot protect my own kids from this. I love them with everything that I am, and they know that. I am their rock, and their world. We can endure and comfort each other through this, but I can't protect them They are learning real fast, that sometimes, life doesn't make sense. Maybe this will help them feel loved by others, since in times of crisis, other rush in to offer comfort and support. I know that God is present in all of this. I am not angry with God, although I have some heavy discussions with God on a daily basis. I know God is present and even though I feel alone sometimes, the hand of God reassures me, and I feel at peace. I also know that my lesson now is to allow others to help me. I have given my heart and soul to help others throughout my life, but now I must be humble and allow others to be there for me.

It's very surreal to have created a Caring Bridge site. It means that I am in a health crisis. I am thankful for the family, friends and strangers who have reached out to offer support. People pull together in a crisis. Some people run however, and that is the hardest part in all of this. People who let petty grudges get in the way and others who cannot handle facing feelings. What is really important at the end of the day? Love and compassion is what is important to me right now. I am acutely aware now that there may have been times in my life when I wasn't tuned in, and certainly times I ran from intense feelings of love and loss. I am sorry about that, deeply sorry. There were also times that I may have been intensely immersed in my own life to be aware of suffering going on around me. I'm sorry for that as well. We need each other and we teach each other, it's the only way we grow, through a crisis. I guess once again, I am being pressed to grow and to help others grow through this crisis. I'm not sure what lies ahead on this new path I find myself on, but this I know.....God will be traveling with me.

Have Faith

Camp has been my saving grace these past 2 weeks. Camp preparation and running camp certainly kept me distracted. Today is the first morning that I haven't had to wake up and head to camp, or head to a doctor appointment. Today has been particularly hard because all of the emotions I have been keeping at bay, flooded me all at once and I have nothing to distract my mind with. I know that is a good thing, to feel....but I just feel a bit overwhelmed. I saw Dr. Eilber last week, a specialist out of UCLA. Synovial Sarcoma is his specialty and now I'll be seeing his team, consisting of an orthopedic surgeon and an oncologist. Dr. Eilber was honest with me. He says 40%-50% of patients like me end up with metastasis cancer within 5 years. I hate those odds for sure. He says of the statistics, those patients showed clear PET scans too, but this cancer is so sneaky and aggressive, it is likely roaming around my body right now, but it is too microscopic to show up on a PET scan just yet. The first treatment will be Chemotherapy, several rounds, beginning by the end of this month. The oncologist will fill me in more about this. I had an echo cardio, to make sure that my heart is healthy enough to handle the toxic chemo they'll be giving me. The good news is, my heart is healthy. I feel like so many people are sending prayers. Even the echo cardio technician said he'd put me in his prayers. The other piece of info I received from Dr. Eilber is that is is a bummer the Podiatrist took the tumor out. Generally, they like the tumor in the body for a bit, so that they can use it as a gage to see if the tumor is responsive to chemo. No tumor, no gage. I really wish the podiatrist had taken a biopsy! Now the clock is ticking and it feels like my life is flashing before my eyes. I've never felt so lonely, although I also feel loved by some friends, family and strangers, who have reached out to lend a hand, offer a hug or ask what they can do. I think the help I'll need will be once I start chemo. I've been so use to doing for others, it will take some getting use to allowing others to assist me, but I know now that I cannot do this alone. I guess I feel alone because I do not have a partner to help me through this. I only have myself at the end of the day, and god. I know I am not the only single person on this planet facing cancer alone, but until you go through this, you have no idea how lonely it feels. Each hug with my kids feels more important, each day that I laugh, cry and feel is a blessing. Even though I slip into hopelessness briefly, I have tremendous faith that I can get through this. Hopefully I will know more next week, regarding the start date of my chemo. The next big appointment is with the oncologist to find out more about what he has planned for me. I'm very scared about the chemo. I'm going to start reading up on the best diet to be on to boost my immune system. I'm curious how I'll look with no hair. I also have realized that I'll have to take a leave of absence from my work, because its unlikely that I can return to work in September. It was two weeks ago when I received the news that my tumor was malignant and it feels like a lifetime ago. It has been the longest two weeks of my life. Crazy how life can turn on a dime. I talk with god about the why Me's, then I hear in my heart, why not me. I guess there will be numerous lessons to learn from this and ways in which my journey will impact others. I''l write and reflect weekly about what I observe while going through this. Cancer does not define me, I am always me, I just have a higher mountain to climb right now and I know I have the strength to get to the top and down the other side

Breathe

I can't seem to sleep past 5:00am every day. Usually, I wake up around 2:30am and the toss and turn for awhile, then sleep on and off. My body, mind, emotions are clearly in a fight or flight state, and I just feel on alert 24/7. Some days, I start to shiver, no matter what the temperatures are and I know that I am just in shock. One day, I truly felt comatose for about an hour, I couldn't feel anything and honestly, I could barely move. Then the tears came, and I cried hysterically which actually felt like a relief after feeling nothing (which kinda scared me). It scared my kids too. My daughter Taylor said, "Mom, please cry...I'm not use to you feeling nothing!" Emotions are what I've built my career on, so I know my emotions and the breakdown of emotions very well. As a therapist, I help others cope through their difficulties, but now I find myself in the midst of tornado of challenges after being diagnosed with Synovial Sarcoma, a very rare form of cancer. I still cannot believe my boyfriend moved out. The thought of handling the household, and my three kids during this health crisis, feels daunting. Last night was the first night in a week that I didn't cry myself to sleep. Progress? No, I think I'm just starting to get angry now. I seem to cry randomly. Yesterday, I cried in the morning while waiting in the line to get e U-Haul truck for camp. I was standing there thinking that all of these people in line have normal errands to run, while nothing seems normal to me anymore. My reprieve from ruminating about the tornado swirling around me is work and camp. The camp I founded and run starts tomorrow, and the business has been a saving grace for me and my kids. We are surrounded by our camp family, which makes us smile and laugh. We have so much to do that I can go hours, focusing only on camp prep, that I almost forget for even a second, that I am going through the most difficult time in my life. Keeping busy is good.

Back to my disappearing boyfriend. Do you have any idea what it feels like to be in the fight of your life, needing a shoulder to lean on and you walk into your closet and are reminded that you are alone? It takes your breath away. I know many people cannot handle emotions, stress and crisis. He swears as my friend, he'll still be there for me, bringing me food and assisting. Beggars can't be choosers right now, so I find myself in a difficult dilemma taking some help from someone who just left me during the time I needed him most. I know, I know, who wants someone around who feels that way. The more confident healthy (cancer free me) would say that. Once you have been diagnosed with cancer though, that all goes out the window, and suddenly you find yourself needing support more than ever. This is where my kids and friends validate that I am better off without him here. I should be with someone who would never leave, someone who has my back and certainly wouldn't leave when I'm in my most desperate hour. My mind starts to jump to this though...how will I ever date again with this diagnosis? "Hi, I'm Denise...I have Synovial Sarcoma and my hobbies include hiking and traveling." I use to think the most scary part for guys when I was dating, was that I'm a therapist. That pales in comparison now. Romance to me lately is a guy who can stick around and not flee because of my diagnosis. Maybe there are cancer dating sites? I almost think that the only guy that would not flee because of my diagnosis is a man also having gone through the same thing! These thoughts make me laugh actually, trying to imagine dating in my future... after chemo, operations, radiation and god knows what other treatments I'll go through. I still have to dream though. I'm only 51, and I have to imagine wonderful things in my future after this nightmare is over, although I know it will never be fully over. Even after treatments, when and fingers crossed, when I'm in remission and cancer free, I will always know its lurking and I'll have to be vigilant and aware that it could resurface again one day. I know many people that live long and fruitful lives in remission, so hope and faith and of course love, is all I have right now. If my kids love could evaporate the cancer, it would, because the love they have for me could rid the world of cancer. They are the wind in my sails right now, and my love for them is what will keep me forging forward.

My PET scan results were ready yesterday. I called the imaging center and they said the results could be picked up until 2:30. It was 1:30, so I flew out the door and arrived at 2:00. I was anxious of course to find out if I have more tumors. Of course, I still have cancer cels which will likely be treated with Chemo, but I am hoping and praying the cancer hasn't spread and that there are no other tumors at this point. When I arrived, the imaging center doors were locked. I called the office three more times and kept knocking. Nobody would answer. I guess they took off early, even though they told me to head down for my results. I was so upset. I spent 90 minutes of my time between the round trip drive and waiting outside the door as I knocked on and off, hoping someone would answer. Don't they understand what this feels like? I have cancer, I had a PET scan, I need to find out if I have more tumors! Nope, they don't understand, they have places to go and things to do on their Saturday and I'm sure they live with the comfort knowing that time isn't urgent to them, as it feels to me right now. So now I wait until Monday to find out my results. This Wednesday, I have an MRI in the morning and an echo Cardio (chest x-ray) in the afternoon. Apparently, chemotherapy is very hard on the heart, so the echo cardio will make sure my heart can handle it. I'm pretty sure that my heart is strong! See, I'm hopeful....I'm on pins and needles and I feel like I can't breathe sometimes, but I am hopeful.

Hills and Valleys

It's hard to sleep, although I know I need sleep more than ever. It's been one week since I received the phone call that turned my life upside down. When I saw the podiatrist this past week, who had misdiagnosed me, he seemed pretty cavalier about making an error in not ever taking a biopsy. His attitude was more like an oops, it's rarely ever anything attitude. Well rarely isn't the answer I needed because as it turns out, I have a rare bad ass cancer and it sure would have been nice if he had taken a biopsy a year and a half earlier because living with a growing tumor, definitely put my life at increased risk. 

The oncologist I saw was clueless and wanted to put me on the hardest core chemo out there. That may be in the cards, but I want a specialist to help me decide my future. I'm now 

in the synovial sarcoma club I guess. I didn't even know one existed, but I have now discovered Facebook groups that offer support for my kind, so I don't feel as alone in this. I had no idea about synovial sarcoma before one week ago, and sadly it usually strikes Kids and young adults. I'm glad it's me and not one of my kids going thru this. 

I'm thankful for my camp, keeping me distracted right now, otherwise I'm sure I would be crying and worrying endlessly and unable to function. I don't know how I'm getting things done. My brain isn't thinking properly and I feel like I'm in a fog. I'm forging ahead though, and even though my house is a mess, I'm getting thru each day. Friends and some family have been sending love and prayers and I truly feel grateful for those giving me support right now.

I had a PET scan today if my entire body. I pray the cancer has not spread beyond my foot. The PET scan is interesting. You lay on this moving narrow bed that jets you into a tube. You are wrapped up like a mummy with your arms crossed over your chest. It was kind of comforting, like being a baby wrapped tightly, swaddled in a blanket. They had country music playing in the background, which oddly was soothing as well and seems appropriate. I feel like my life is like a country song lately, with lyrics like "my boyfriend left me, he moved out in the night, my cancer taunts me but I know I gotta fight it." Oh yeah, did I forget to mention my boyfriend of 4 1/2 years moved out? Yeah, like I said, this past week surely takes the cake! I do feel like a diagnosis like this wakes you up. Life will forever seem even more precious to me. I knew it was valuable before, but now that I'm faced with mortality, I pray every day for more time. 

The feelings I've had over this past week? Confusion, shock, worry, sadness, pain, joy, comfort, and love. I've cried more tears in a week than I've shed in years. I've watched people disappoint me as they walked away from me and watched others run toward me to help. I've seen the best and the worse in people I thought were in my inner circle. Some are now forever out of my inner circle. I feel like I've had some highs, like being on top of a hill or mountain and I feel like I've had many lows, like being down in the Valley. I will forge forward. I may have to drag myself out of bed, use humor to make the best of an awful situation and fake it until I make it, but I will fight with every breath I have. There is way too much to do yet, like hike Mt Marcy in New York with my kids, even if I have to hike it with a prosthetic leg! This synovial sarcoma journey has just begun, so I better buckle up because it's going to be a bumpy ride. 

Upside Down

I arrived at my moms in Lake Havasu, with my three kids in tow, and the 115 degree temps make you want to jump right into their pool. My kids ran to get their suits on and did just that, but I hesitated, since I had foot surgery several weeks earlier and had not received clearance from my doctor yet to get my sutures wet. This was a Friday, and my appointment to have my stitches removed was the following Monday, so perhaps the doctor would give me the thumbs up. My foot had a lump removed that had been a pure annoyance over the past year or two. The doctor had assured me it had been a cyst or a lipoma, both very safe and benign conditions. I had only been at my moms for approximately 10 Minutes before grabbing my phone to consult with my doctors office. When they picked up, I asked the nurse to just ask my doctor if I could swim and my doctor was on the phone immediately. Before I could ask him about swimming, he explained that the hospital had been trying to reach me. My pathology report had come in and he hated to tell me this on the phone, but my tumor was not benign, it was malignant. A wave of sickness took me over, and of course tears started streaming down my face before I could fully comprehend what he was saying. He told me I had an appointment with oncology the next week. He also went on to tell me that my tumor was quite serious. These are words nobody ever wants to hear in a lifetime in the same sentence about themselves, "tumor, serious, malignant, and oncology!" I was crying hysterically by the time I got off the phone. I cannot even begin to describe how that feels. It's horrible. After explaining to my parents, I had to explain to my kids, the unexplainable. After a tearful weekend, lots of hugs, and listening endlessly to spiritual music to lift my spirits, I went in Monday to see my doctor and get some clarity on the situation. 

My podiatrist was sorry and he couldn't quite explain why he had never even considered getting my foot biopsied. The best he could explain is that nothing serious ever enters the foot. Out of all malignant tumors, less than 1% are in the foot!! It still didn't comfort me. In addition, the tumor in my foot is a very rare type of tumor called a Synovial Sarcoma. Once again, I was left to digest unfathomable information, that I had a malignant tumor, it was removed but the margins were not clear and thus deadly cells were left in my foot, and these abnormal cells are a very rare type. Wonderful. "Where do I go from here,'" I wondered! 

My oncology appointment was the following day, so I knew that the meat of the information would be given the next day. Here's where my mind went.. I will be getting an amputation of my foot and I'll be very lucky and consider it a miracle if my cancer has not spread to any other parts of my body. I'm not generally a practical person in a time of distress but this time, something was different. When your life is at stake, you start to realize that an expendable body part might just be a price worth paying. I love to hike, and I'm on my feet constantly, but the thought about giving up my foot seems like an easy decision if it saves my life. I haven't even met with a specialist yet, and I'm preparing myself with the hard facts of my situation. Life or limb? I choose life! I combed the internet that night looking for other people in the same predicament and other stories seemed even worse. Some people have tumors in places that are inoperable and can't even make that choice. They had to go with horrendous amounts of radiation and chemo, so much so that they often felt like dying. You don't truly understand how many people are suffering until you find yourself in the same boat or unless someone close to you is going thru it. The one thing I can say is since receiving the news that I have cancer, every hug with my kids seems more precious and every good friend seems more priceless. It's interesting how crisis does that to us, it brings gratitude into full perspective and every breathe is truly a gift. 

Its strange how your life can change with one phone call. I went from planning my summer, deciding on where to take the kids and planning the summer camp I run. 5 days later, I'm planning on turning a kids bedroom into a dual spare bedroom with a double bed, so that family and friends have a place to sleep when they come see me, because I may not be able to care for my kids while undergoing treatments. Its a bizarre feeling, to literally go from thinking time is endless, to praying to god for a little more time. 

Hello Friend

In Newbury Park, I have been a regular at the local Starbucks for the past several years. I go there religiously several times a day to get my iced coffee or passion iced tea refill. There was another regular, who was always standing outside on the curb drinking his coffee and waving hello to people as they came and went. When I first moved back to Newbury Park, I was curious about the guy who was the Starbucks greeter as he was there morning, noon and night. Finally, I asked him his name one day, while we exchanged our daily hello's. He told me his name was Henry and he asked me my name and we chatted briefly. Henry would often start waving to me as soon as he saw me pulling into the parking lot. He was equally as friendly to other faithful Starbucks regulars. Many might have been put off by Henry, perhaps judging him for his gruff exterior and two day shadow, but Henry was a gentle soul...smiling and waving as people passed by. I overheard him getting into political discussions occasionally and he was certainly passionate about his point of view. He was caring and kind and would hold the door open if you were entering behind him. Recently, I noticed that Henry wasn't there to greet me and flowers were sitting where Henry use to stand. Henry passed away last Saturday from a seizure, just shy of his 30th birthday. It turns out that Henry had a traumatic brain injury from a skateboard accident as a teenager. He had been permanently disabled, so Starbucks became his social outlet for the past ten years. I'm going to miss Henry. He eagerly greeted me every day, and he had a knack for making you feel like he was super glad to see you, even for a moment. He touched so many lives with his hello each day. Funny how something so simple can mean so much. We take for granted the simple things and don't even realize how significant the little things really are. Henry's father says that Henry felt he had a mission to make people feel cared about and that Henry even resisted going on vacation with the family sometimes, because it would mean he couldn't be at that Starbucks saying hello to people. Who knew that in an ordinary looking parking lot, outside of a Starbucks, stood an angel with a mission. How many angels are in our midst, those folks (young and old, male or female, whose only mission is to make sure those people they come in contact with feel cared about. Rest In Peace Henry. I'm sure you are now the Newbury Park Starbucks guardian angel, still waving hello to us from the other side.

(Henry Morgan: May 25, 1987-Jan 28, 2017)