Christina asked me to share my story and I have been struggling with what angle to approach it from. I guess I will just start from the beginning and try not to ramble. When I was 17 years old my mom developed breast cancer. It was caught early and she had the lumps removed, had reconstructive surgery and started chemo and radiation. My mother’s treatment was complicated by the fact that she was a type 1 diabetic. As many of you know, chemo and diabetes don’t mix well. You take insulin to keep your blood sugars level in check, but you have to eat to balance the insulin out. You take chemo and you can’t hold food down. Your blood sugars drop. When your blood sugars drop you often start to go into insulin shock. This was the case with my mother.
One night my father woke me up at 2am and asked me to come upstairs and try to help him get my mom dressed and into the car, he was taking her to the emergency room. Mom was combative and kept saying she could not leave until the next nurse came. She thought she was already at the emergency room, as a nurse, not a patient. Eventually we did get her into the car and my dad got her to the emergency room where she worked. After a couple of episodes like this her doctor thought it best to discontinue treatment. He felt like they had accomplished what they needed to for follow up treatment. It seemed to be okay for years, as she went for her check ups and was fine.
Flash forward 11 years. My mom was at the tanning bed one day. When she was finished getting dressed she bent over to tie her shoe. As she started to straighten up she felt what she described as a pop. After a few days of living with the pain she went to see her family doctor to see if she had possibly broken her tail bone. The doctor suggested an x-ray to see if there was a break. What came back on the x-ray was a dark spot. As soon as they saw it, mom and the doctor both knew what it was, but to be sure he ordered an MRI. When the results came back they were conclusive. The breast cancer that she had fought so many years before had metastasized to her bones. To be specific, it had moved to her lower lumbar. This would cause here immense pain in her back and arms.
As I mentioned before, my mom was a nurse. She knew what was to come. She knew so well, in fact, that she immediately made an appointment with a family friend who was the funeral director we had used for my father and step-father. She planned and paid for her own funeral. It might sound a little morbid, but I believe that it was her way of trying to control what was out of her control.
She also started weekly chemo treatments. It was like reliving the past. The chemo, though improved from 12 years prior, still made her extremely sick. She didn’t loose her this time around but the other physical results were the same. Chemo still reeked havoc on her blood sugar levels. Dropping dangerously low , into the 40’s and spiking ridiculously high into the 800’s. It would cause her to retain fluids so drastically that on one occasion she gained nearly 40lbs of fluids over a couple of days. It put such a strain on her heart that she had to have two units of blood infused. Such would be our lives for the next 4 years. Costly treatments that would make her so very sick. Pain medications that ranged from oxycodone to morphine.
My once strong mother, who had buried two husbands and raised 3 girls, became so week. She went from being the caregiver to being the one cared for. The doctor finally said that she could no longer live alone. At that point my sister and brother-in-law moved in with her. Progressively her condition worsened. It got to the point that she could not be left alone at all. Sadly, my mother who had long since been forced to stop working and COBRA’ed her insurance as long as she could, but had run out, was forced to go on Medicare. Most people aren’t aware that Medicare only covers 80 percent of treatment and you are still responsible for the other 20 percent. It doesn’t cover any prescriptions for narcotic pain medications. She had to use up nearly all of her savings and not only lived in fear of death but of loosing her home and all of her money.
There was very little help taking care of her. We could not afford to hire anyone to help us care for her. I started working four 10 hour shifts, Monday thru Thursday. This freed me up to stay with her Friday, Saturday and Sunday. Megan, Jason and mom’s boyfriend Russ would split the other four days. Life as we had once known it ceased to exist. We couldn’t go far because she was so uncomfortable most of the time. We rarely could go out as a family. We spent a lot of time at home.
As the end got closer, her condition worsened. She finally ended up in long term care at the hospital. We would go there daily to help her and keep her company, help her bathe, and try to keep her in her bed, chair or at least her hospital room. She was so agitated most of the time. I’m not sure how much was pain and how much was fear. Pain meds eventually didn’t work and sedatives rarely worked. She was there about three weeks before she slipped into unconsciousness. She stayed that way for a week.
Between respiratory therapy coming to suction the fluid from her lungs, we would file and paint her nails, watch Law & Order (cause that’s what we had done for four years) and just lay in bed with her so we could be close to her. However, she was completely unresponsive. We finally reached a decision to remove her fluids. It was clear that they were the only thing keeping her alive.
October the 4th I got the phone call I had long anticipated. The hospital called me and asked me to come immediately. I had an hour drive from work to the hospital. My cousin and I talked on the phone the whole way. I have a feeling it’s the only reason I made it there in one piece. I got there and we spent the last 24 hours of my mother’s life with her, holding here hand and waiting. On October 5, 2005 my mom lost her battle.
Though those four years were difficult and painful, I would not trade one minute of the time that I spent with my mother. Those times really changed my family. We are stronger, closer and more loving as a result of what we have been through. We also learned a lot about caring for others. When you have a chance to help, whether emotionally, financially or lending a helping hand to a family dealing with this nasty disease, please take it. You have no idea how much it will be appreciated. And the most important thing my family learned its not to mourn death but to celebrate life.