A Hollow House

My son has moved out and only the cat and I remain. The walls are bare after having the place painted to sell. Boxes were packed up and moved out yesterday. My home is a hollow shell of what it was. It feels strangely like the day I moved in 5 years ago. It is just that empty. Back at the beginning it had not been renovated and I didn’t know what lay ahead. It was a new life full of possibilities. I bought the townhouse for myself and my autistic son to start anew. So many good things happened for him in those 5 years. He developed a very full life in our town. He had a job, a church, and a therapeutic support system. My life was focused on making a good life for him while also earning a living. Unfortunately after a lifetime of living in large cities like NY, Boston and Tokyo, I never adjusted to the small town life here.

A year ago I decided it was time to make a change. I had always envisioned moving west at some point in the future and even though I’m not retired yet, I decided to do this sooner rather than later. I explored a few possibilities. I was considering New Mexico and Colorado but most of all I was interested in Arizona. I resumed a search that I had started in 2008. Back then I went out to Scottsdale, Prescott and Sedona to see if I would like living in AZ. For several reasons it wasn’t the right time but I was intrigued with how different AZ was from all the places I had lived before. I felt happy there because there was so much sun. I noticed a difference in myself. I felt energetically in tune with the area.

In 2016 I made several trips out to Arizona and Colorado to explore. The act of exploration was rewarding and fun and a new lifestyle emerged. It gave me hope again. I felt that there were possibilities for my future after all. Getting him on board with this move was not easy. After all, he was very content in the northeast in a small town even though he had grown up in Brooklyn and NYC. He didn’t want to leave and I tried to find a way for him to stay without me but it wasn’t going to be possible. I found a program in Phoenix and he’s there now. They are teaching him life skills in order to transition into some sort of supportive living program later. He is 26 years old. I never had the empty nest that my friends experienced when our kids came of age. Mothers of disabled adults are never free.

Right now I’m looking back and forward at the same time. The past is done, over, finished. I don’t get any do-overs. The future is hopeful but still uncertain. The home that I moved into with anticipation is hollow and empty but I am not. There was a life here. There are so many good memories and most of all I expressed myself creatively here. I did renovations and designs that I am so proud of. It gives me a sense of accomplishment and satisfaction to arrive at this point. There was nothing left for me to do here. I was stuck last year and I knew that if life continued that way for another 5 years, nothing was going to change or get better.

Aging is full of unknowns. Health issues can’t be predicted. Even practicing all the best health habits can still result in an unexpected illness down the road. That is why I decided to make a big change now. I couldn’t afford to wait. One small go round with cancer was enough to wake me up and make me grasp the present fully. We always hope that a new place will be a better place but it doesn’t always turn out that way. There are no guarantees on change.

However, feeling hopeful is a refreshing change in and of itself. My experiences over the last 12 months were exciting and fun. The process was extremely enjoyable. I’ll never forget that. My son has made strides in his new program and he feels more hopeful about his future without me because chances are, he’ll be around long after I’m gone. It’s important to create win-win situations with our loved ones. Everyone deserves to be happy and fulfilled, even mothers.

 

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BC/AC – Before Cancer/After Cancer

My life after breast cancer and how it made me wake up to the realities of my future

In 2013 I had stage 1 breast cancer. It changed the way I see life and it changed all of my decisions thereafter. I hope you have never said what a friend said to me. She said, “Stage 1? That is not even cancer, you had pre cancer, why do you tell people you had cancer”?. I told her to get her facts straight and that DCIS is pre cancer, this was in fact real, malignant, Stage 1 cancer.

An elderly, burnt out sounding, uncaring, cold, male radiologist gave me the results on the phone 3 days after my biopsy. I was stunned by the call. He was a stranger, who had not done the biopsy and he didn’t tell me why the lovely radiologist from 3 days prior, who had promised that she would be the one to give me the results on Thursday, wasn’t calling me instead.  He said, “your biopsy was malignant….let me be clear this is cancer. You do have breast cancer”. Then he wanted me to repeat it back to him so that he was sure I was not in denial about it. There was no concern, no empathy in his voice, no tenderness at all. This was just another annoying phone call he needed to make and cross off of his to do list. I immediately called my PCP hoping for some warmth. When he called back I said, “my biopsy was positive I have breast cancer”.  With a “so what” attitude he said,  “did you want something from me”?  He sounded like he was saying, “so why are you calling me about this?”. “Well…uh…” I thought to myself,  “I guess I don’t want a damn thing from you“.

However, I’m really writing this to say that life has gotten so much better for me since that diagnosis as many people with cancer will tell you. It is the beginning of a new and better life for many, if found early. Of course it depends on the severity of the cancer, the location and the stage. Of course. That almost goes without saying. I felt so blessed to have caught it immediately. In fact, they had been watching that exact spot for 3 years. “What”!? I look back at earlier mammograms, 2010, 2011, 2012, “3:00 L Breast, blah, blah, blah, we are concerned, have her come back in 6 months”. I suppose they cannot remove every lesion when it’s still benign and I did move a few times during that time, so did not have consistency in my medical care, but I did have consistent mammograms. It was after an extremely stressful time that it became malignant. My father had just died and there had been turmoil in my life at work and other areas.

PLEASE don’t misunderstand. I know that I am fortunate compared to many. As a social worker I have heard countless stories of stage 2, 3 and 4 cancers of all kinds with mets, chemo treatments and I never had any of that. I had a lumpectomy and 7 weeks of radiation, 5x/ week. On the other hand, I cannot tell you how much it hurt when that person said “you didn’t even have cancer, your cancer was a pre cancer” and if that were true it would be one thing, but it wasn’t. People often do say all the wrong things but that is not what I intended to write about here.

Breast cancer, as you have heard from others or experienced yourself, was a tremendous blessing in my life. Cancer woke me up to many realities. Anyone who has gone through this will tell you that there are either constant thoughts afterward like, “it happened once, it can happen again” or “my body mutated into a cancerous mass so why wouldn’t it happen again?” Or “if the radiation zapped this part won’t the cancer grow outside of those boundaries since it’s unlikely to come back within that square that they radiated?” (so very close to the heart on the left side). The wake up call is about pending, looming death.

After all the treatments were over I was euphoric for months. The reason I went for that overdue mammogram was because a close friend had been diagnosed with stage 4 lung cancer and I remembered that I was behind schedule and needed to get it done. He is gone now. He died at 48 in 2014 and it was heartbreaking to all of us who knew him.  After my diagnosis, we talked on the phone weekly and we called it our “cancer chat”. I knew I was very lucky that I caught it early. I felt ridiculous talking about my little stage one when he had mets and suffered so much with chemo, chest tubes and multiple admissions to the hospital. Mine was nothing compared to his. But he said it made him feel better to check on me to see how I was and we helped each other. He had felt ill for years and chose to take a non traditional route rather than get a medical diagnosis for several years. I am not sure that it made much difference, I think the end would have been the same either way. He walked around probably for years without knowing that he had lung cancer but he had symptoms.

I took that trip to France I always dreamed of after radiation was over and counted my blessings. I went with a choir to Rouen and Paris. It was my first trip to Europe. I sang my heart out in magnificent Cathedrals in France that summer. I enjoyed seeing my eldest son get married to my beautiful daughter-in-law and was thankful, thankful, thankful all the time. I contacted old, lost friends. I had visitors after the surgery, in my home. People were good, they were kind, they helped. I did the renovations in the house that I had wanted to do. I lost a job at that time but I gained a life. I went into private practice and became my own boss. I built my practice during radiation and it grew! The things we do, that we can’t believe we did, when we look back.

I came to terms with the most difficult issue in my life. My autistic son’s need for a future plan. What will he do when I’m gone? Where will he live? How will he function in the world? He was so dependent at 23 at the time. Now he is 26. He was terrified as I went through all of this because he knew that his future was so vague. Who would take care of him?

Fast forward 3 years and we are in a better place with this issue of planning for his future. It’s a complicated and convoluted road. Finding housing and services for an autistic adult who cannot manage independently is costly and there are few good options. We have a plan now. Since I wanted to move west I looked for programs in the state where I wanted to live because after cancer I decided that my needs mattered too. After 26 years of being a caretaker I have decided that my needs matter very much because if I put myself first I will be alive longer and both of my sons need me to be. There are people that hope that I will be around for awhile and so do I. I want my life to feel good and to be my own creation. So I’m making that happen and I’m making sure that my younger son has all the possible opportunities to become as independent as is possible in his case. He’ll attend a 2 year program that will help with that in the state that I want to move to. So we are moving int he right direction and deep down I know, it’s all because of cancer.