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)