After a busy day yesterday, I realized just how far I've come in the last year. While attending a get together with friends we made while Daniel was in high school, as I explained that I had been "out of commisson" last year, not feeling well, I couldn't really remember exactly what was wrong with me. This morning, I still cannot say why, but last year at this time is a blur. I was at another low point I suppose. Today I feel as though I am reconnecting. Plugging back into my life. This is a good time. It was also a good time after I had a neruo-stimulator implanted into my back to relieve the never ending back and leg pain I had been experiencing for years. After a very scary brain trauma, and an emergency surgery, I finally had the wires implanted.
Was I surprised when he came home from school with a list of 7 names, girls and boys, with specific color requests. At first I laughed. He was earning some money. Very entrepreneur smart. I asked him if he was sure these kids realized that they needed to pay for the hats, and he told me most of them were going to give him the money the next day. So I waited, not sure if his salesmanship was good.
True enough, the next day he came home with money. So off we went to the store to buy the right yarns, and he happily collected his $3.50 and went straight to the toy department. This could be a beneficial partnership. And so, the next morning as I was driving him to school I told him we should name this "business". Suggestions came from both of us. He suggested simply, "Hats". I suggested 'Pink" because it was my favorite color. He said that sounded too girlish. Then I had a thought, I wondered how to say hat or pinkhat in Italian. So we called Grandma, and "Rosa Cappello" was born. Little did I know how this would become a viable business. In no time at all, I had all three of my children, especially my daughter Jenna would help grow this business. Daniel had ceased his interest in "selling", but by now, it was becoming a real business with a business certificate, and ID number. Jenna, who was in high school by now was very picky about what she chose to wear kept telling me she wouldn't be caught dead in a homemade hat. Until one day I found her trying one on in front of a mirror. She sheepishly said, when I spotted her,"I kinda like this". Great! A new teenage market appeared. Things went very well for a stay at home pretty much disabled mom. We earned enough money to make it worth keeping going.
I moved my way up to a spot at the back of a salon, and then to a store space. I was thankful that things were on the mend. I felt pretty good. I had a business to go to work at, making my hours work for me.
That was until one day at home when I put my head on the kitchen table and told Dan I had a headache. I cautiously told him, it felt like that spinal headache I'd had before. After waiting a few days with no relief I called Dr. Plunkett and explained it to him. He brought me into the office and we determined that it was sounding like a CSF leak headache. Cerebral spinal fluid leak. This was not good news for me. It had been 3 years since that first devastating brain trauma. I underwent CT's MRI's nuclear tracing. None of the tests showed anything. He suggested a Headache clinic in Michigan to see if they could find anything, and how to cope with daily headache.
It was a month long stay at MNHI. Michigan Neurological Headache Institute. It was a program where testing is done, Pain medications are adjusted and personally adapted to each patient. Workshops to learn to deal with issues associated with chronic pain. And a great workshop to help others realize what a day in the life of "me" feels like. I found myself feeling hopeless. Each patient is assigned a specific doctor, who sees you every day and recommends possible treatments. During my stay it was decided that I probably did not have a chronic condition, but a physical problem needing to be fixed. My doctor recommended the country's leading CSF specialist who happened to be at Cedar Sinai in Los Angeles. He made a call and told me they would be contacting me when I came home. I was thinking, as we drove home from Michigan, that soon, probably meant in a month or so.
A day after I was home I received a phone call from a nurse at Cedar Sinai. Dr. Schivink wanted to see me, how soon could I be there. My records had already been sent. With little resources to make a cross country trip, we discussed it, argued about it, and finally went to my parents. We were deeply in debt, but this was a chance to relieve, yet again, chronic pain.
So alone, I traveled to Los Angeles, being met there by Dan's cousin Anthony who not only picked me up, but looked "after" me during my stay. I was at a hotel close to Cedar Sinai. I had to have a physical with a local internal medicine Dr. I had to have X-rays, another CT scan( I could no longer have an MRI because of the metal in the stimulator). And the appointment with Dr. Schivink would be a day long event. I have the MRI in the morning, and if it showed anything he would do a procedure called a blood patch. Blood is withdrawn from the arm and re injected into the spinal space where the leak was, if they could find one. The focus up until this time had been around the area in my lower back where my previous leaks and surgeries had been.
I remember being utterly surprised when he came into the room after the MRI and told me they had found a leak in my neck. They called it a spontaneous CSF leak. I was puzzled. He explained that in "rare" occurrences, the dura (the lining that is enclosed around the spinal cord) spontaneously springs a leak. No specific reason except that the dura is sometimes thin. This made sense to me.
So I was given a mild sedative and blood was withdrawn and injected in my upper back. I was then placed on a tilted table with my head closer to the floor. This was suppose to help the blood travel to my neck and patch any leak. When I was finally able to sit and then stand up, I was headache free. I could return home, but with strict instructions to do no heavy lifting, pushing, head twisting, etc, for 6 weeks. So Anthony, who had stayed the entire day at the hospital, drove me back to the hotel. I was tired, but hopeful. After a day of recouperation I flew home, yet again renewed.
Things went well for about 6 months and then the headache returned. It was recommended that I see a neurologist. So off I went to Buffalo to the famous Dent Institute to meet with a Dr. Mezchler. He was the leading headache specialist in the area. He went through my entire history, joking with Dan telling him I was complicated. I had heard that more than once. What an odd assortment of malises I had been subjected to. But he decided it would be in my best interest to have a MRA, similar to an MRI, but the images captured show movement, and could therefore pinpoint a leak. This would mean I would have to have the neurostimulator removed. Back to Dr. Plunkett we went. If I had it removed I would not be able to have another implant because of scar tissue, and risk of a larger CSF leak.
It was with a heavy heart that I went, in a blizzard, on Valentine's day into surgery yet again. Having the device gone was depressing. I no longer had that tingling relief. I was seeing Dr. Krasner again for this chronic depression that kept cropping up every time something in my body went haywire. She was helpful, and continually told me to be hopeful. Everything wrong was a physical ailment and could be hopefully fixed. She also told me to find a new normal. I would never be normal in the true sense of the world, because of all I had been through. But I could find a place to begin again. After this new problem was addressed.
I know I was sad. Just. Sad.
Having the MRA done was, yes, hopeful. But what would it mean? Another leak? Another blood patch? Surgery?
I was not surprised to find out that there was indeed a new leak. But was very surprised to discover there were 3 separate leaks in my neck. It meant major surgery. Again. Because they were in areas not good for blood patches, he would surgically patch them. There were risks. Paralysis, death, nerve damage.
I think this surgery, more so even than the previous surgeries hurt more. I don't think it was any more painful, realistically, but my tolerance for pain had increased and therefore, I experienced in my head, neck and arms, severe pain. I could barely move my right arm, and my fingers were numb. This was terrifying for me. My hands were my career. I had managed to continue playing piano and organ through out my ordeals, but if my hands remained numb, it would be the end of the job I not only depended on, but was my one salvation. No matter how bad things would get, I always had my music. This new predicament was truly scary. I was sad. And I was terrified. I was told that it could take up to a year for nerves to regenerate, so to not lose hope. At least the headache was gone, hopefully for good.
So this brings me up to about 3 years ago. I had returned function in my hands and was teaching piano again. I had "quit" my job as an organist as my priest and I had come head to head on issues that could not be resolved. I stopped going to church, so hurt was I with the breach of faith and job description made by the pastor of my parish. I think this has been the biggest hurt in my life. I let the people of my parish down, although my son Ben initially took over my job, but, busy with his life, soon gave it up only to play occasionally, as is still the case. There were a few confrontations with this priest, and I soon had hateful feelings, and decided it wasn't worth it. So, I prayed at home, playing and singing my praises, trying and not always succeeding to forgive. Today, I am still very sad. I started going back to church this past lent, forcing myself to face the man who had so deeply wounded my spirit. It has been hard. The first Sunday I came home and cried. The organist who has since taken over, is neither a trained organist, nor a good leader. The church was pitifully half filled. It had been filled to standing room only 4 years ago. No one sang. No one spoke. It was like going into a dead space.
The next week, I went back, determined to fix what I thought I had done wrong. I had defected. It was my fault the church was no longer full. I realize that a lot of it has been due to the pastor, but I had always felt like the glue that held things together. The glue had long ago dried up and gone away. So upset, I made a decision to become involved. I sang. Loud. People didn't look at me, I think they realized it was me, there in the pews among them, doing what I do. Praying, loudly. I don't mean to sound pompous, but I know I had done a good job of bringing life to our little community. And people approached me after mass, and told me so. I am back, I told them. I was going to try my hardest to get my job back, even though Fr. had told me "YOU quit. We won't need you." Well, I am here to say, yes, you do need me, whether you think so or not. In this regard, I have come full circle. And I think having cancer has made me stronger, a fighter.
As my 3 year anniversary approaches, I am surrounded by love and beauty. And it has taken 3 years to realize what a survivor is. In my case, it is not just about the cancer, but about my whole adult life. Getting the diagnose was one of those pivotal moments when my world literally tilted, It felt as though the earth had moved into a new a scarier place. I have gone through many emotions, but most of all, I have prayed. I continue to dialog with God. All the time. I know that no one of us lives forever, and we really do not know the time or day when it will happen that we leave this world and enter a new a perfect one. It is easier to think about this now. I believe, for the moment, I have found an inner peace.
May you be so blessed with peace.
Barb
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