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