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.