The last tumor, a leiomyosarcoma, was removed from my daughter through a liver and gall bladder resection in July of 2014. I am happy to report that she is well. Something, if not multiple things are scanned every three months. When she says she’s tired, I worry. When she doesn’t feel good, I worry. I’m always worried. I am so grateful she is still here.
At the time of my daughter’s last cancer diagnosis, I was recovering from a broken leg and still had contractors working in my house repairing the extensive damage caused by a broken water line to the icemaker behind the refrigerator. I am happy to report that my leg has healed completely. The contractors are gone. Now anything that normally happens in a home – a burnt out light bulb, a faucet leaking, even a dead plant causes stress and triggers my well-worn trauma response. The record drought has not helped. But I am grateful to finally have some peace and quiet.
This June my daughter and I flew to NJ to visit my mother, now residing in assisted living with dementia or Alzheimer’s and to see Kim’s Grandmother (her Dad’s mother). My son, with no Li-Fraumeni gene mutation had recently bought an even bigger motorcycle. Shortly after landing at Newark airport with Kim, every bell on my phone went off multiple times when I turned off ‘airplane mode’. My son was in the emergency trauma unit of Stanford hospital back in California. He had an accident while riding the motorcycle during a work lunch break. I contacted my husband. He deployed and would let me know whether I should fly back home after assessing the situation. Our family, my husband, my daughter, my son and myself are all experienced in crisis management, assessment and dealing with life and death. I am grateful to have such an amazing husband.
My son crushed his scapula, broke his collarbone and broke seven ribs on the same side in multiple places. He was lucky. We were lucky. I felt lucky. Prior to this I spent plenty of time trying to deal with the idea of the risk of losing both my children, one to cancer, the other to motorcycle death. I was very depressed and had to choose to live after coming to the conclusion that I couldn’t control these things anyway. I am grateful my son lived. He is still recovering.
Back in NJ, and given the OK, Kim and I stayed for the weekend as planned. My husband, now an experience caregiver, had it covered. During our visit, my mother was cycling in and out of her memory issues. During the previous six months she had been hospitalized and was in and out of hospice twice. Kim’s other grandmother, my first husband’s mother was not doing well at 89. We visited for two days. She was hospitalized the day we flew home and died two days later. The day after flying back to California, I arose at 4:30am to take my son back down to Stanford for surgery. Then I spent the next month caring for him while he recovered. I am grateful that my mom still has some of her mind left sometimes. I am grateful to have had such a wonderful and inspiring mother-in-law. I am grateful that Kim was able to see her again while she was still alive. I am grateful that my son’s broken body is working to heal.
My daughter got married at SF City Hall the September after her cancer surgery. My husband and I thought this was something worth celebrating and gave the happy couple a monetary gift to plan a party, a vacation, save or whatever. They chose and began planning their dream wedding party last Thanksgiving and the 3 day- EVENT was held last month. I am grateful that we all lived to celebrate their love. It was an amazing weekend conceived and executed by two powerful and wildly creative women. I am grateful I have a new daughter that I love.
Meanwhile, I was diagnosed with another tumor – another parathyroid adenoma. Over time having routine screening and testing, checking parathormone levels had fallen of the lab request even after having two of these tumors in 2003 removed. Oh well. Over the past year, I had been losing weight (I have no need to lose weight), have had terrible muscle and bone pain, of course anxiety and depression, naturally insomnia. But the thing that precipitated the new diagnosis to surface was that the root of my ‘eye’ tooth reabsorbed requiring it to be pulled out in the spring. I began the tooth implant process. Hyperparathyroidism sucks the calcium out of the bones. I am grateful that this has been diagnosed.
I am awaiting my surgery after the holidays now that I found the right doctor and specific tests have confirmed the new tumor. (She has a long wait list)! I am not happy about having another surgery. I have lost count but this OR visit will be somewhere in the mid-20s. I have learned that I have full-blown osteoporosis. In the meantime there was a chronic lymphocytic leukemia scare. My blood is fine at the moment but a flow cytometry is now part of routine blood work. I am grateful that this tumor has a 99% chance of being benign. I am grateful that I have the tumor and it’s not Kim.
At this moment I am sitting in the surgical waiting room waiting for my husband to come out of surgery for an abdominal hernia repair, or a lipoma removal or worse. I literally just learned it was in fact a lipoma. Whew! So in our immediately family, every one of us will have had surgery of varying severity within the past 1½ years.
I have been unable to blog. I have been trying to focus on wellness and have had to back away from cancer. I have had to turn down many opportunities in the world of Li-Fraumeni and Hereditary Cancer. Another book is on hold. I am grateful that for the moment, I can do this. Believe me.
I am in survival mode. I am trying to recover and process everything that has and is soon to happen. I am seeing a professional trauma recovery expert. I have travelled in between all of this and at times I felt like I was in flee mode. Maybe I am. But I know I can’t always run. I am grateful that I can choose to take the time to figure out how to recover.
After 4 years of holding my husband’s gift of six ballroom dancing classes, I finally walked in the door of the dance studio and began to take lessons. If you follow me on Facebook you already know this. I am loving this. This is something that I have wanted to do since I was a young girl. It’s helping with my depression. I’m reconnecting with my body. I’m working things out with music and believing that for a time I can feel great. I am building up my stamina and making new friends. I am trying not to strive too much and use having fun as the benchmark. I am grateful that after going through so much my body is having some fun.
I have returned to sewing. With dancing there are so many opportunities for costumes and creativity. I love pretending. While sewing I listen to books or reflect on my relationship and memories of my mother, grandparents. I feel their love and am grateful.
Last weekend I went to my uncle’s 90th birthday party. I saw many cousins that I haven’t seen in around 25 years. I heard from a few of them that I was exactly the same as they remembered me…before cancer.
I am the same but not really the same. I know how to survive and for that I am also grateful!
Below is the Glinda Routine with one of my teachers Alexis – I am actually feeling joy!