A Not So Great Day. It is not even a very good day. I have found that having cancer, and being a survivor does not mean that I do not experience bad days. I do. Often. It is a struggle every single day, and sometimes, every single hour.
While I remain in good health, I have so very many days that I have fears. Fear of the unknown. Fear of what the next blood draw will show. Fear of being very sick. And this fear often accompanies some physical pain. Is it my back? Or is it the cancer? Am I having a migraine? Or is it the cancer? I am so very fatigued. Is it the cancer? Always. Is it the cancer? Is it going to rear it's ugly head again?
I struggle daily with these questions, as I am sure that all cancer patients do. All survivors. We are all united in this one nagging thought. And I doubt that it will ever, ever go away. I think that if I ever reach a point where there are no longer active cancer cells in my blood, I will still be thinking, can it come back? Will it come back? Will I survive if it does come back?
I am a very faithful person and I believe without a doubt that God is with me always. I know that one day I will enter a whole new world with no more questions. No more pain. No more sickness or cancer. But what I do not know and can never know in this world, is what each new moment brings. I try to be positive. I have a mighty ability to assure people who ask now I am doing, to say, I am doing great. Which I am. But so often, the outward expression, belies what I may be thinking on the inside. What I am feeling. Not so assured. Not so positive. More than a little scared. I fear being ill. Being subject to medications that may have side effects that make me not want to fight. A great fear that one day I may need a bone marrow transplant.
My doctor assures me every time I go that I am doing well. But how can he really know? How can anyone really know? People often say, "you could be hit by a car tomorrow". But I firmly believe that people with cancer have a universal fear that is very real. It could come back. It could kill me.
I invite you to leave a comment about this. I do not often share my fears. Today I am not having such a great day. I will go outside and enjoy the sunshine and work in my yard. Things I haven't been able to do the past few years. It is refreshing, new flowers and vegetables growing high with abundance. It is a great thing on a not so great day. I wish you peace.
Friday, May 30, 2014
Wednesday, May 28, 2014
A new reality.
My life has changed so much. It is amazing. In 1997 I was a wife, a mother of 3 young children, had a job I loved. Things did not change overnight. With the many back surgeries I've endured, CSF leaks, migraines, chronic pain, and 3 years ago, Leukemia. My world has revolved around my health. There are very few moments that I can recall as being a good period. There always seemed to be one crisis after another.
But today, looking back, I believe I am now living in a new reality. And it is not highlighted by pain. It has been over a year since I have had to be hospitalized. This is huge. Before this, I don't think there was any length of time when I was doing as well as I am now. Even with CML I feel healthier. I feel reconnected with life. A good life. I am feeling energized each morning as a new day begins.
I still don't sleep well. I still have pain much of the time. I still need to take daily meds, including Gleevec, my chemo med. I am still fatigued. But something changed.
When I was diagnosed with cancer my world tilted into twisting and turning shapes. It often felt like a rainbow that was distorted and tangled. I could feel it. I was immersed in it. And I am not sure when it started to straighten out and become a beautiful panorama of bright and beautiful vibrant colors. I feel like I have taken off dark sunglasses and can now see my world beginning again. I feel so very blessed. I will not know in this lifetime why I have been made to suffer, but I will know. Some day when I am in a new world, with my family and friends. When I bridge the gap between human life and eternal life. I will know all that is in the mind of God.
As my 3 month blood check gets closer, so to does the anxiety that comes with it. But for some reason, I feel okay. I am okay. I will be okay. Even if things don't continue on the positive side as they are now, I know things will come around again.
My new reality is this; though the seas of life wash over me, I know that my God will stand by me. I have a new peace.
I wish you peace.
Barb
My life has changed so much. It is amazing. In 1997 I was a wife, a mother of 3 young children, had a job I loved. Things did not change overnight. With the many back surgeries I've endured, CSF leaks, migraines, chronic pain, and 3 years ago, Leukemia. My world has revolved around my health. There are very few moments that I can recall as being a good period. There always seemed to be one crisis after another.
But today, looking back, I believe I am now living in a new reality. And it is not highlighted by pain. It has been over a year since I have had to be hospitalized. This is huge. Before this, I don't think there was any length of time when I was doing as well as I am now. Even with CML I feel healthier. I feel reconnected with life. A good life. I am feeling energized each morning as a new day begins.
I still don't sleep well. I still have pain much of the time. I still need to take daily meds, including Gleevec, my chemo med. I am still fatigued. But something changed.
When I was diagnosed with cancer my world tilted into twisting and turning shapes. It often felt like a rainbow that was distorted and tangled. I could feel it. I was immersed in it. And I am not sure when it started to straighten out and become a beautiful panorama of bright and beautiful vibrant colors. I feel like I have taken off dark sunglasses and can now see my world beginning again. I feel so very blessed. I will not know in this lifetime why I have been made to suffer, but I will know. Some day when I am in a new world, with my family and friends. When I bridge the gap between human life and eternal life. I will know all that is in the mind of God.
As my 3 month blood check gets closer, so to does the anxiety that comes with it. But for some reason, I feel okay. I am okay. I will be okay. Even if things don't continue on the positive side as they are now, I know things will come around again.
My new reality is this; though the seas of life wash over me, I know that my God will stand by me. I have a new peace.
I wish you peace.
Barb
Tuesday, May 27, 2014
Did you ever have one of those days when you feel both sad yet energetic? I do not really understand it. Usually when I am sad, I do not function very well, but today, I feel that I need to be busy. I suppose this is just my mind trying to keep my brain from thinking about the sadness I feel. And the odd part I am not even sure why I am feeling blue. I have a feeling writing this blog has something to do with that, and that I am getting close to my 3 month blood draw and check up.
The kind of Leukemia, CML, has been managed with a daily medication called Gleevec. For the most part it has worked, keeping my white cell blood count well within the normal range, and there are very few cancer cells even showing on the test results. When I was first diagnosed, it was hoped that I would get a complete "molecular response", which means there are no live cancer cells observed. I have not, unfortunately had this happen. Yet.
When I began taking Gleevec, I had some unpleasant side effects like vomiting, edema, having a hard time sleeping, yet being tired all the time. I also have a rash that comes and goes that at times embarrasses me as it breaks out on my arms and is not so great to look at. But these are minor in contrast to the fact that taking this pill everyday keeps me healthy and alive. I must have my blood checked every three months.
I find that as the date draws near, I become a little anxious. I have an anti anxiety medication that I can take, and I do. It takes that underlying fear that threatens to come to the surface. I think I have resolved myself to the fact that there is possibility, however small, that I could "relapse". I am very aware how precarious our lives are, and God could decide to pluck me up to heaven sooner that I may be ready. I don't think I am afraid of being there. I am just now sure how I will get there. Will there be pain? Will I suffer? Will I even know? These thoughts always invade my consciousness near my blood draw date.
This year, my anniversary is June 6th. I have my blood drawn on the 4th. I suppose I should not be so anxious, and I really hope that this feeling will exit for good, by I doubt that it ever well. Cancer has a stronghold. I may lead a completely "normal" life. But, as I've said before, my normal, is definitely not even close to a healthy person. My entire soul is all wrapped up in my day to day living.
This past September I went in for my check up, and when Dr. Sood came into the room I knew almost at once that something was wrong. He was looking at me while he said,"So, your counts are going up." At first it didn't register. Until he showed it to me on the computer. The graft that keeps track of the TSH(cancer cells) was moving up. It had gone up a little bit the previous check, but this time it was hovering very close to the line. The big black line on the chart that separates the "in remission" to "out of remission". They don't really call it remission unless there are no cancer cells apparent. As I said, I have never had this, but have hovered in the middle of the "green" line(no cancer cells)j and the black line. I was precariously close to that line. A thread of fear tickled my spine. I could feel it creep up my back and into my brain. H mentioned things like changing the medication, but if the medication I was taking was becoming immune to the cancer, I may need to think about a bone marrow transplant.
I remember going home that day and immediately going to the Internet. Dr. Sood had told me we would need to wait until December to test my blood again as it is a slow growing cancer, and may take awhile for the cells to multiply. If the counts were up again in December, we would move to a new protocol. Wait for the cells to grow? This sounded horrible. I would have to let leash my mutated white blood cells to grow in number before I could try another therapy. To say I was anxious, nervous, upset.... It was crazy. I was going crazy. I wanted to scream. In my head and my dreams I did scream. I think it would have done me good to go somewhere and do just that. Scream. Loud. And long.
By the time November and Thanksgiving came, I was beside myself with worry. I had a friend that was going through the bone marrow transplant, and we were staying in contact, as he told me of his experiences. I didn't think I could do it. I still don't. There are a lot of side effects of the heavy doses of chemo and radiation to kill all the white cells, both healthy and cancerous. The 100 days. After receiving the donated bone marrow you begin 100 days of isolation to be free of anything that could cause infections. Any kind of infection. It was a tough road for him. And he is a Marine Vet, younger and much healthy then I am.
I asked my brothers and sisters to have their bone marrow tested to see if they would be a match should I need it. I was apprehensive about asking. I was thinking it would but them out of their way. They all have jobs, and families and other obligations. I didn't want to intrude on that. I was surprised that they all said yes. In fact, Karen didn't even let me finish asking when she said simply,"just tell me when and where to go." I was humbled. I am humbled. On Thanksgiving, after saying Grace, I asked all that had gathered at our table to pray for me. I had never done that before. It seems selfish to me for some reason to ask for prayers. I give them freely, but do not accept them so freely, somehow thinking I am unworthy. I am still learning to accept these gifts from God. Because that is what prayers are. Small gifts from people who can do nothing else.
When the day finally arrived, I had had the blood drawn a week before the appointment, I had Dan come with me. I didn't know how I would react if it was bad news, and I would needed his support.
Dr. Sood came into the examine room smiling. "Everything looks good." The count had gone down. A lot. I breathed. He is not sure why or how this happens, but he assured me that things were good.
June 4th will be 6 months, and I am still nervous. I don't know if things will go up or down or stay the same. It is this game I must play out in my head every three months.
I think I just answered the question I asked when I began writing. I don't think I am sad so much as I am anxious. The day will come and pass and my journey will continue. I am still surviving. One day at a time. This realization came to me sometime in March. There was an aha moment. I had been thinking of all I had been through after receiving an invitation from our local Relay for Life sponsored by the American Cancer Society to walk in the survivor lap. Last year I walked for the first time, and I cried the entire lap of the track. It seemed unreal. I shouldn't be there. The invitation that I was holding in my hand in March, was a pivotal moment. I was a survivor. I am a survivor. And I have RSVP'd and will walk proudly on June 14th. God has given my many graces and I am thankful for every one, big or small. If I am anxious and questioning, all I have to do is remember the grace of God that I am here, living as he would wish. And I pray. And I have peace.
May my peace be shared with you.'
Barb
The kind of Leukemia, CML, has been managed with a daily medication called Gleevec. For the most part it has worked, keeping my white cell blood count well within the normal range, and there are very few cancer cells even showing on the test results. When I was first diagnosed, it was hoped that I would get a complete "molecular response", which means there are no live cancer cells observed. I have not, unfortunately had this happen. Yet.
When I began taking Gleevec, I had some unpleasant side effects like vomiting, edema, having a hard time sleeping, yet being tired all the time. I also have a rash that comes and goes that at times embarrasses me as it breaks out on my arms and is not so great to look at. But these are minor in contrast to the fact that taking this pill everyday keeps me healthy and alive. I must have my blood checked every three months.
I find that as the date draws near, I become a little anxious. I have an anti anxiety medication that I can take, and I do. It takes that underlying fear that threatens to come to the surface. I think I have resolved myself to the fact that there is possibility, however small, that I could "relapse". I am very aware how precarious our lives are, and God could decide to pluck me up to heaven sooner that I may be ready. I don't think I am afraid of being there. I am just now sure how I will get there. Will there be pain? Will I suffer? Will I even know? These thoughts always invade my consciousness near my blood draw date.
This year, my anniversary is June 6th. I have my blood drawn on the 4th. I suppose I should not be so anxious, and I really hope that this feeling will exit for good, by I doubt that it ever well. Cancer has a stronghold. I may lead a completely "normal" life. But, as I've said before, my normal, is definitely not even close to a healthy person. My entire soul is all wrapped up in my day to day living.
This past September I went in for my check up, and when Dr. Sood came into the room I knew almost at once that something was wrong. He was looking at me while he said,"So, your counts are going up." At first it didn't register. Until he showed it to me on the computer. The graft that keeps track of the TSH(cancer cells) was moving up. It had gone up a little bit the previous check, but this time it was hovering very close to the line. The big black line on the chart that separates the "in remission" to "out of remission". They don't really call it remission unless there are no cancer cells apparent. As I said, I have never had this, but have hovered in the middle of the "green" line(no cancer cells)j and the black line. I was precariously close to that line. A thread of fear tickled my spine. I could feel it creep up my back and into my brain. H mentioned things like changing the medication, but if the medication I was taking was becoming immune to the cancer, I may need to think about a bone marrow transplant.
I remember going home that day and immediately going to the Internet. Dr. Sood had told me we would need to wait until December to test my blood again as it is a slow growing cancer, and may take awhile for the cells to multiply. If the counts were up again in December, we would move to a new protocol. Wait for the cells to grow? This sounded horrible. I would have to let leash my mutated white blood cells to grow in number before I could try another therapy. To say I was anxious, nervous, upset.... It was crazy. I was going crazy. I wanted to scream. In my head and my dreams I did scream. I think it would have done me good to go somewhere and do just that. Scream. Loud. And long.
By the time November and Thanksgiving came, I was beside myself with worry. I had a friend that was going through the bone marrow transplant, and we were staying in contact, as he told me of his experiences. I didn't think I could do it. I still don't. There are a lot of side effects of the heavy doses of chemo and radiation to kill all the white cells, both healthy and cancerous. The 100 days. After receiving the donated bone marrow you begin 100 days of isolation to be free of anything that could cause infections. Any kind of infection. It was a tough road for him. And he is a Marine Vet, younger and much healthy then I am.
I asked my brothers and sisters to have their bone marrow tested to see if they would be a match should I need it. I was apprehensive about asking. I was thinking it would but them out of their way. They all have jobs, and families and other obligations. I didn't want to intrude on that. I was surprised that they all said yes. In fact, Karen didn't even let me finish asking when she said simply,"just tell me when and where to go." I was humbled. I am humbled. On Thanksgiving, after saying Grace, I asked all that had gathered at our table to pray for me. I had never done that before. It seems selfish to me for some reason to ask for prayers. I give them freely, but do not accept them so freely, somehow thinking I am unworthy. I am still learning to accept these gifts from God. Because that is what prayers are. Small gifts from people who can do nothing else.
When the day finally arrived, I had had the blood drawn a week before the appointment, I had Dan come with me. I didn't know how I would react if it was bad news, and I would needed his support.
Dr. Sood came into the examine room smiling. "Everything looks good." The count had gone down. A lot. I breathed. He is not sure why or how this happens, but he assured me that things were good.
June 4th will be 6 months, and I am still nervous. I don't know if things will go up or down or stay the same. It is this game I must play out in my head every three months.
I think I just answered the question I asked when I began writing. I don't think I am sad so much as I am anxious. The day will come and pass and my journey will continue. I am still surviving. One day at a time. This realization came to me sometime in March. There was an aha moment. I had been thinking of all I had been through after receiving an invitation from our local Relay for Life sponsored by the American Cancer Society to walk in the survivor lap. Last year I walked for the first time, and I cried the entire lap of the track. It seemed unreal. I shouldn't be there. The invitation that I was holding in my hand in March, was a pivotal moment. I was a survivor. I am a survivor. And I have RSVP'd and will walk proudly on June 14th. God has given my many graces and I am thankful for every one, big or small. If I am anxious and questioning, all I have to do is remember the grace of God that I am here, living as he would wish. And I pray. And I have peace.
May my peace be shared with you.'
Barb
Monday, May 26, 2014
A new day.
I woke up at 3am. I couldn't sleep, so I came downstairs and lay down on the sofa with the window open. The fresh air felt refreshing. As the sun came up and the sounds of the very early birds was a calm I needed. I put in a not so great night of sleep. Yesterday I planted flowers. Something I have not been able to do for many years. I've been pulling weeds for over a week, doing a little bit at a time, as I need to be careful not to overdo. I do not want to have back pain. I do not want to have neck pain. I do not want to hurt. I find that although I am so grateful that my life seems to be moving into a new normal, I still get discouraged with my limited physical self. God has been very good to me. I am alive, and every beautiful morning is a new day. A new start. But I still have those days when for some reason or another I feel sad. I suppose this will be a problem for the rest of my life. I think, no I know, God understands, and I look to him to help me through these days. I think I am feeling a bit down today because, while blogging yesterday, I wrote about my ministry, and how it has been the biggest regret of my life that I quit the one thing that truly brought me joy. And that I was able to share that joy. I feel that I have let myself down, and my church community.
When I made the decision that I could no longer work for a priest that had squashed my spirit, I expected that Dan would support me. I don't think he did. My emotions were very much at the surface. There was a raw edge that threatened to strangle me. I think Dan was more worried about the monthly check we would no longer receive. In fact, when Fr. invited him to dinner a few months later, as a thank you for the monthly socials he coordinated, I was extremely hurt that he would go. Alone. I was not invited. At first he said he didn't really want to go, but in the end, he went. It felt like a slap in my face. I felt that he should have stood by me and make it known that Fr. had hurt me. Dan never wants to upset the apple cart. And I cannot count the number of times he has hurt me because he doesn't want to hurt someone else. Whether I was right or wrong, as my husband, I expected him to defend me, as his wife, and to acknowledge the wrong that had been done to me. I know he agrees with me to this day that what Fr. did to me was wrong. I know this. But it still hurts. It felt like Fr. was trying to put a wedge between us. He had never asked either one of us to dinner. He never reached out in that way, and to now extend this invitation seemed a purpose driven action. It hurt then. It hurts now.
Yesterday was a "social" morning. I did not go to mass because I had taken some medication and didn't feel up to it. Dan came home and said that Fr. had told him how good it was that I was looking so good, and that I had started coming to church again. I am curious as to why he told Dan, and hasn't mentioned it to me on any given Sunday. For the 4 years I have been trying to forgive and move on, some days the old hurt feelings return. I suppose I will struggle with this for some time to come yet.
Struggles. My life has been one struggle after another. I haven't really said too much about my cancer. I have chronic meyloid leukemia, CML. When I started this blog, I intended to chronicle my battle with cancer, but I seem to have meandered from that. I have such a long history of bad health, that my life, both physical and mental still remains complicated.
One of those life altering moments, when your world shifts has happened to me more than once. But no more so then when I was told I had cancer. Things stopped moving and seemed to be a slow motion film happening outside my body. When a roomful of nurses walked into my hospital room to break the news, I was, at first confused. No one said I had cancer, and for a moment I didn't realize what was happening. Then one of the nurses I have known for years hugged me, with tears in her eyes, saying she had a brother, or friend, or, someone, who had leukemia and was doing fine. As soon as she said leukemia I remember exactly that moment. I had leukemia. I had cancer. Blood rushed in my ears. The people in the room seemed to freeze. I could see them, but the world tilted and I couldn't hear anything. Then another nurse said Dan would be there in a few minutes, and I was being discharged from the hospital but I would need to see Dr. Sood, the oncologist in his office the following day for a bone biopsy. I remember leaving the room in wheelchair. I had been ill, and in the hospital for over 2 weeks. They had mentioned Leukemia, but kept telling me that there was really only a small chance that it was that. So much for those small chances and small percentages. Here I was again. I could not absorb it. It took weeks to even acknowledge it. It. It was a thing. And it was inside my body, moving in my blood, and growing in my bone marrow. I cannot say it terrified me. I am not sure how I would describe it.
I could not absorb the fact. I cried. I was sad. I mourned. My life would never be the same. I had been through the "never being the same" before. But this was different. This was life altering. There was before I had cancer, and there was after I had cancer. I am living in the now I have cancer life. It is not so bad now.
My condition is chronic. There is no cure, but it is treatable I was told. I would start on a chemo medication that would fight the mutated white blood cells. Many people have been on this medication and the survival rate is very high. There were, however some side effects.
Taking a pill is different then receiving chemo intravenously. I didn't lose my hair. I didn't feel deathly sick. But as my body adjusted to the medication I was often vomiting, I gained weight, and I was so very tired. I had edema, so I now had to take Lasix.
In the last three years, I have gained 40 pounds. This past February, I resolved to lose the extra weight. While the other side effects have pretty much gone away, the water weight remains a problem, adding to the weight problem. I began slowly, not depriving myself of any food. As I bought smarter and ate fresher, I noticed the pounds starting to come off, and my ever present craving for sugar now seems to be satisfied with fresh fruit instead of fresh donuts (although I cheated this morning and had a donut). I started drinking more water.
As of today, I have lost 22 pounds. I feel better. Lighter. In body and in spirit. I think it was in March that something odd happened. I realized I was a survivor.
I have been thinking of myself as a "victim", questioning God all the time, wondering why all these physical things have plagued me. And one day, I woke up and realized, that while I have endured much, I have survived. I am a survivor. I cannot tell you why this suddenly hit me. It just did. And for the past few months now, every day seems to be a joy. My mood has, for the most part lifted from a daily complaint of the day's hurts, and aches and pains, to praise to God for each new day. I have more energy. I want to do more. God has doubly blessed me. He decided perhaps that I needed all the challenges I have experienced, have brought me through to this feeling that I now have. Will it last? Some days it feels like euphoria. And I question whether it will last or not. I still fear it will go away, and depression will once again overtake me. It is like that big black hole is at the side of me, waiting to plunge me back into its blackness. I am able to keep it at bay right now. I feel, for the most part, good. I pray that God will keep me in this good place, and help me to continue to see each new day as a fresh beginning.
Every day is a good day. I don't nap during the day anymore. I don't cry as much. God is guiding me in this new life that I have been given. I have a peace now, that I never knew I had. I pray you too may have this peace.
Barb
I woke up at 3am. I couldn't sleep, so I came downstairs and lay down on the sofa with the window open. The fresh air felt refreshing. As the sun came up and the sounds of the very early birds was a calm I needed. I put in a not so great night of sleep. Yesterday I planted flowers. Something I have not been able to do for many years. I've been pulling weeds for over a week, doing a little bit at a time, as I need to be careful not to overdo. I do not want to have back pain. I do not want to have neck pain. I do not want to hurt. I find that although I am so grateful that my life seems to be moving into a new normal, I still get discouraged with my limited physical self. God has been very good to me. I am alive, and every beautiful morning is a new day. A new start. But I still have those days when for some reason or another I feel sad. I suppose this will be a problem for the rest of my life. I think, no I know, God understands, and I look to him to help me through these days. I think I am feeling a bit down today because, while blogging yesterday, I wrote about my ministry, and how it has been the biggest regret of my life that I quit the one thing that truly brought me joy. And that I was able to share that joy. I feel that I have let myself down, and my church community.
When I made the decision that I could no longer work for a priest that had squashed my spirit, I expected that Dan would support me. I don't think he did. My emotions were very much at the surface. There was a raw edge that threatened to strangle me. I think Dan was more worried about the monthly check we would no longer receive. In fact, when Fr. invited him to dinner a few months later, as a thank you for the monthly socials he coordinated, I was extremely hurt that he would go. Alone. I was not invited. At first he said he didn't really want to go, but in the end, he went. It felt like a slap in my face. I felt that he should have stood by me and make it known that Fr. had hurt me. Dan never wants to upset the apple cart. And I cannot count the number of times he has hurt me because he doesn't want to hurt someone else. Whether I was right or wrong, as my husband, I expected him to defend me, as his wife, and to acknowledge the wrong that had been done to me. I know he agrees with me to this day that what Fr. did to me was wrong. I know this. But it still hurts. It felt like Fr. was trying to put a wedge between us. He had never asked either one of us to dinner. He never reached out in that way, and to now extend this invitation seemed a purpose driven action. It hurt then. It hurts now.
Yesterday was a "social" morning. I did not go to mass because I had taken some medication and didn't feel up to it. Dan came home and said that Fr. had told him how good it was that I was looking so good, and that I had started coming to church again. I am curious as to why he told Dan, and hasn't mentioned it to me on any given Sunday. For the 4 years I have been trying to forgive and move on, some days the old hurt feelings return. I suppose I will struggle with this for some time to come yet.
Struggles. My life has been one struggle after another. I haven't really said too much about my cancer. I have chronic meyloid leukemia, CML. When I started this blog, I intended to chronicle my battle with cancer, but I seem to have meandered from that. I have such a long history of bad health, that my life, both physical and mental still remains complicated.
One of those life altering moments, when your world shifts has happened to me more than once. But no more so then when I was told I had cancer. Things stopped moving and seemed to be a slow motion film happening outside my body. When a roomful of nurses walked into my hospital room to break the news, I was, at first confused. No one said I had cancer, and for a moment I didn't realize what was happening. Then one of the nurses I have known for years hugged me, with tears in her eyes, saying she had a brother, or friend, or, someone, who had leukemia and was doing fine. As soon as she said leukemia I remember exactly that moment. I had leukemia. I had cancer. Blood rushed in my ears. The people in the room seemed to freeze. I could see them, but the world tilted and I couldn't hear anything. Then another nurse said Dan would be there in a few minutes, and I was being discharged from the hospital but I would need to see Dr. Sood, the oncologist in his office the following day for a bone biopsy. I remember leaving the room in wheelchair. I had been ill, and in the hospital for over 2 weeks. They had mentioned Leukemia, but kept telling me that there was really only a small chance that it was that. So much for those small chances and small percentages. Here I was again. I could not absorb it. It took weeks to even acknowledge it. It. It was a thing. And it was inside my body, moving in my blood, and growing in my bone marrow. I cannot say it terrified me. I am not sure how I would describe it.
I could not absorb the fact. I cried. I was sad. I mourned. My life would never be the same. I had been through the "never being the same" before. But this was different. This was life altering. There was before I had cancer, and there was after I had cancer. I am living in the now I have cancer life. It is not so bad now.
My condition is chronic. There is no cure, but it is treatable I was told. I would start on a chemo medication that would fight the mutated white blood cells. Many people have been on this medication and the survival rate is very high. There were, however some side effects.
Taking a pill is different then receiving chemo intravenously. I didn't lose my hair. I didn't feel deathly sick. But as my body adjusted to the medication I was often vomiting, I gained weight, and I was so very tired. I had edema, so I now had to take Lasix.
In the last three years, I have gained 40 pounds. This past February, I resolved to lose the extra weight. While the other side effects have pretty much gone away, the water weight remains a problem, adding to the weight problem. I began slowly, not depriving myself of any food. As I bought smarter and ate fresher, I noticed the pounds starting to come off, and my ever present craving for sugar now seems to be satisfied with fresh fruit instead of fresh donuts (although I cheated this morning and had a donut). I started drinking more water.
As of today, I have lost 22 pounds. I feel better. Lighter. In body and in spirit. I think it was in March that something odd happened. I realized I was a survivor.
I have been thinking of myself as a "victim", questioning God all the time, wondering why all these physical things have plagued me. And one day, I woke up and realized, that while I have endured much, I have survived. I am a survivor. I cannot tell you why this suddenly hit me. It just did. And for the past few months now, every day seems to be a joy. My mood has, for the most part lifted from a daily complaint of the day's hurts, and aches and pains, to praise to God for each new day. I have more energy. I want to do more. God has doubly blessed me. He decided perhaps that I needed all the challenges I have experienced, have brought me through to this feeling that I now have. Will it last? Some days it feels like euphoria. And I question whether it will last or not. I still fear it will go away, and depression will once again overtake me. It is like that big black hole is at the side of me, waiting to plunge me back into its blackness. I am able to keep it at bay right now. I feel, for the most part, good. I pray that God will keep me in this good place, and help me to continue to see each new day as a fresh beginning.
Every day is a good day. I don't nap during the day anymore. I don't cry as much. God is guiding me in this new life that I have been given. I have a peace now, that I never knew I had. I pray you too may have this peace.
Barb
Sunday, May 25, 2014
A period of respite.
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.
Life was good. I had started a business called "Rosa Cappello Hat Shoppe" I had created a "secret stitch" crochet hat that became very popular. It is actually an amusing side story. Daniel was in 4th grade. I had made a few of these hats for my boys, and his many boy cousins for Christmas. On the first day back to school after Christmas vacation, Daniel wore his hat to school. He came home and asked if I could a make a hat for his friend. I told him I would be happy to, but his friend would have to buy the yarn. I told him to tell his friend to either but the yarn, or I would charge $5.00 and I would give Daniel 50 cents commission. Questions followed about how commission works because why did I get most of the money? So with that in mind I sent him to school the next morning thinking no further about it.
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
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
Friday, May 23, 2014
So I didn't realize I was a survivor. Sometimes I still don't. After blogging this morning about my career as a music minister, it got me thinking. There were things that turned sour there as well, and I am in my 4th year since quitting a job that I loved and feeling betrayed by a priest who looked at me as only doing a "job" and not a ministry. I don't feel comfortable going into details, but there comes a point in your life when you cannot abide an attack on your faith or your whole being and this is what happened. It was at a low point in my life and deflated my spirit. And that was just one year before I was diagnosed with cancer. It is much more recent then my back and neck problems, but it seems important to add it. God has been good to me, and although it hurts that I cannot be at church playing my prayers and encouraging others to sing their prayers as well , I believe it has happened for some bigger reason then myself. I just need to wait and find out.
So I will continue my story with the psychological test I had to undergo before I could have the surgery that would help alleviate my back and leg pain; the implantation of a neuro-stimulator.
I had a follow up appt. with Dr. Krasner about a week after taking the test. She put my worries to rest when she said I didn't even come close to "failing" it. She said although I had some depression, she explained that when you have chronic pain, it is a common occurrence. She was very reassuring. In fact she cleared me. I was now free to meet with Dr. Plunkett again. I decided that it would be a good idea to continue seeing Dr. Krasner because I found that I had so much anger bottled up inside. I think I was just mad at the world. But I blamed many things on Dan, and attacked his family because I felt that he was choosing them before me. I don't think it so much anymore, but he is not a touchy feely kind of guy, and it is hard for him to show me affection and talk to me. Just talking would have been a help, but we seemed to have gotten to a place where I was complaining constantly and I knew it, but I just wanted him to talk to me. He didn't. As I talked things out with Dr. Krasner I found that it is not all that uncommon for caregivers to learn this behavior of doing what needs to be done, but not being able to fix things, they tend to stop communicating a meaningful way.
But I was hopeful. I would have the surgery and I would feel better. It wouldn't fix anything, but it was a start. I made an appointment to meet with Dr. Plunkett again.
I was a bit timid when Dan and I arrived for the consultation. Our first meeting hadn't gone very well, and I still wasn't sure I liked him, but I did feel confident that he was a good neurosurgeon. The visit went well. He scheduled the surgery for a few weeks later. He went over with me the specifics, like that I would be awake for the surgery even though I wouldn't feel any pain. I needed to be awake so they could place the wire exactly where my pain was. This would be a trial surgery, and the wires would be outside in a small incision. I would be given a handheld "remote" that I could control how strong or weak the electrical stimulator would feel. I would be able to adjust the frequency and strength of the signal. He informed of the seriousness of major surgery, especially near the spine. The wire would be placed in the hollow space between the spinal cord and the dura, a membrane that encloses the spinal cord with spinal fluid. There were the usual risks he had to tell me about, possible paralysis, spinal fluid leaks, and even death. Very small percentages of these, but he had to tell me about them.
The day of the surgery I remember feeling upbeat. The anesthesiologist promised me that I wouldn't be sick after the surgery, a problem I had with my previous surgeries. And although I don't remember the specifics, I know he explained to me how I would be in this "twilight sleep", so that I could converse with the surgeon. I didn't understand it, but I soon found out what it meant. I remember waking, sort of, to find myself laying face down with oxygen on my face, and the tubing hurting my cheek. Odd. Dr. Plunkett was asking me if I could feel the tingling feeling. It was amazing. I could feel it, and as he worked to place the wire in the right spot I remember laughing when he asked if I could feel it in my "buttock". I actually started laughing and was told to lay still. A very strange sensation. To explain how it felt, I used the analogy that it felt like the vibrations from an electric razor along the path of the pain. It somehow tricked my brain into believing that the stimulation blocked the pain. All I knew when I woke up in recovery that I was amazed when the Medtronic "salesman" was at the side of the bed telling me he was going to turn the stimulator on. It felt wonderful. I cannot, to this day describe the feeling. I was elated, excited, relieved. Dr. Plunkett had come in as well and told me that I might experience a headache because of the puncture into the spinal canal. I didn't care.
I don't remember telling Dan about it, but I do remember later in the afternoon while Ben and Dan were visiting, I did get a headache. The nurses gave me something for it and I think I fell asleep until the following morning.
When I was told that even though I had a headache I should try and walk around testing the stimulator. An intern came in and told me to try and start walking around as soon as possible. As soon as she left the room, I got out of bed. I noticed a sizable spot of watery blood where I had been laying. I went out of the room to ask a nurse about. She stopped the intern and told her. She came with me into the room. When she saw the spot she told me to lay down immediately as she was going to get Dr. Plunkett. Something was wrong. I knew that there was an open incision where the wire was, so I wasn't sure what was going on. When he came in he said I needed to be rushed back into surgery, as it looked like I was leaking spinal fluid. A lot of it. I was terrified. I called Dan right away. I needed to see him before they wheeled me away. I remember him getting there just moments before Dr. Plunkett himself wheeled me into the operating room. I really don't remember much else.
When I woke up in recovery I was told that I had had a "brain sag". It meant that the spinal fluid that had leaked out had caused the brain(which floats in the spinal fluid) actually sag. I felt strange. I had a massive headache, and I was foggy. Dr. Plunkett informed me that they had to remove the wire, and the leak was sealed with packing. I should start to feel better. My brain had suffered a trauma and it might take a while for things to come around. It was a strange sensation, and the headache didn't seem to go away despite the pain meds I was given.
In all I spent over 10 days in the hospital for a trial which should have been an overnight stay. Because the headache didn't seem to get any better, the doctor did several procedures until finally I was well enough to go home. I had talked with Dr. Plunkett, who I now felt much more warmly about and was adamant that I wanted the device because it had worked. He told me I would have to wait at least 6 weeks and then we would see.
I know my mom tried to talk me out of it. It was a serious issue, the brain sag, and although it took many weeks for me finally be free of the fog I had been in, I knew I wanted the relief I had briefly felt. Dan tried to talk me out of it. a lot of people did. But it did no good. I wanted the surgery.
And I got it, finally. God had watched over me and saw that I healed, and gave me the thing I had most wanted, relief from the never ending pain. I returned to work rejuvenated. I started reconnecting with friends. People noticed the difference. They told me they could see it in my face. I was happy. I still had episodes when I would do too much and still have pain, but I had medications for those times. But for the most part, things returned to normal, or what was my normal.
Until one day, I lay my head on the table. I had a headache.
This may seem a never ending drama. It was. It seems long to me, and I lived it. As I look at things now I see that while there has been much tumult in my life, there have been moments of peace. I will continue this journey I am on knowing that God has given me peace when I've needed it, even if it doesn't always feel like it. I am truly blessed.
I wish you peace.
Barb
So I will continue my story with the psychological test I had to undergo before I could have the surgery that would help alleviate my back and leg pain; the implantation of a neuro-stimulator.
I had a follow up appt. with Dr. Krasner about a week after taking the test. She put my worries to rest when she said I didn't even come close to "failing" it. She said although I had some depression, she explained that when you have chronic pain, it is a common occurrence. She was very reassuring. In fact she cleared me. I was now free to meet with Dr. Plunkett again. I decided that it would be a good idea to continue seeing Dr. Krasner because I found that I had so much anger bottled up inside. I think I was just mad at the world. But I blamed many things on Dan, and attacked his family because I felt that he was choosing them before me. I don't think it so much anymore, but he is not a touchy feely kind of guy, and it is hard for him to show me affection and talk to me. Just talking would have been a help, but we seemed to have gotten to a place where I was complaining constantly and I knew it, but I just wanted him to talk to me. He didn't. As I talked things out with Dr. Krasner I found that it is not all that uncommon for caregivers to learn this behavior of doing what needs to be done, but not being able to fix things, they tend to stop communicating a meaningful way.
But I was hopeful. I would have the surgery and I would feel better. It wouldn't fix anything, but it was a start. I made an appointment to meet with Dr. Plunkett again.
I was a bit timid when Dan and I arrived for the consultation. Our first meeting hadn't gone very well, and I still wasn't sure I liked him, but I did feel confident that he was a good neurosurgeon. The visit went well. He scheduled the surgery for a few weeks later. He went over with me the specifics, like that I would be awake for the surgery even though I wouldn't feel any pain. I needed to be awake so they could place the wire exactly where my pain was. This would be a trial surgery, and the wires would be outside in a small incision. I would be given a handheld "remote" that I could control how strong or weak the electrical stimulator would feel. I would be able to adjust the frequency and strength of the signal. He informed of the seriousness of major surgery, especially near the spine. The wire would be placed in the hollow space between the spinal cord and the dura, a membrane that encloses the spinal cord with spinal fluid. There were the usual risks he had to tell me about, possible paralysis, spinal fluid leaks, and even death. Very small percentages of these, but he had to tell me about them.
The day of the surgery I remember feeling upbeat. The anesthesiologist promised me that I wouldn't be sick after the surgery, a problem I had with my previous surgeries. And although I don't remember the specifics, I know he explained to me how I would be in this "twilight sleep", so that I could converse with the surgeon. I didn't understand it, but I soon found out what it meant. I remember waking, sort of, to find myself laying face down with oxygen on my face, and the tubing hurting my cheek. Odd. Dr. Plunkett was asking me if I could feel the tingling feeling. It was amazing. I could feel it, and as he worked to place the wire in the right spot I remember laughing when he asked if I could feel it in my "buttock". I actually started laughing and was told to lay still. A very strange sensation. To explain how it felt, I used the analogy that it felt like the vibrations from an electric razor along the path of the pain. It somehow tricked my brain into believing that the stimulation blocked the pain. All I knew when I woke up in recovery that I was amazed when the Medtronic "salesman" was at the side of the bed telling me he was going to turn the stimulator on. It felt wonderful. I cannot, to this day describe the feeling. I was elated, excited, relieved. Dr. Plunkett had come in as well and told me that I might experience a headache because of the puncture into the spinal canal. I didn't care.
I don't remember telling Dan about it, but I do remember later in the afternoon while Ben and Dan were visiting, I did get a headache. The nurses gave me something for it and I think I fell asleep until the following morning.
When I was told that even though I had a headache I should try and walk around testing the stimulator. An intern came in and told me to try and start walking around as soon as possible. As soon as she left the room, I got out of bed. I noticed a sizable spot of watery blood where I had been laying. I went out of the room to ask a nurse about. She stopped the intern and told her. She came with me into the room. When she saw the spot she told me to lay down immediately as she was going to get Dr. Plunkett. Something was wrong. I knew that there was an open incision where the wire was, so I wasn't sure what was going on. When he came in he said I needed to be rushed back into surgery, as it looked like I was leaking spinal fluid. A lot of it. I was terrified. I called Dan right away. I needed to see him before they wheeled me away. I remember him getting there just moments before Dr. Plunkett himself wheeled me into the operating room. I really don't remember much else.
When I woke up in recovery I was told that I had had a "brain sag". It meant that the spinal fluid that had leaked out had caused the brain(which floats in the spinal fluid) actually sag. I felt strange. I had a massive headache, and I was foggy. Dr. Plunkett informed me that they had to remove the wire, and the leak was sealed with packing. I should start to feel better. My brain had suffered a trauma and it might take a while for things to come around. It was a strange sensation, and the headache didn't seem to go away despite the pain meds I was given.
In all I spent over 10 days in the hospital for a trial which should have been an overnight stay. Because the headache didn't seem to get any better, the doctor did several procedures until finally I was well enough to go home. I had talked with Dr. Plunkett, who I now felt much more warmly about and was adamant that I wanted the device because it had worked. He told me I would have to wait at least 6 weeks and then we would see.
I know my mom tried to talk me out of it. It was a serious issue, the brain sag, and although it took many weeks for me finally be free of the fog I had been in, I knew I wanted the relief I had briefly felt. Dan tried to talk me out of it. a lot of people did. But it did no good. I wanted the surgery.
And I got it, finally. God had watched over me and saw that I healed, and gave me the thing I had most wanted, relief from the never ending pain. I returned to work rejuvenated. I started reconnecting with friends. People noticed the difference. They told me they could see it in my face. I was happy. I still had episodes when I would do too much and still have pain, but I had medications for those times. But for the most part, things returned to normal, or what was my normal.
Until one day, I lay my head on the table. I had a headache.
This may seem a never ending drama. It was. It seems long to me, and I lived it. As I look at things now I see that while there has been much tumult in my life, there have been moments of peace. I will continue this journey I am on knowing that God has given me peace when I've needed it, even if it doesn't always feel like it. I am truly blessed.
I wish you peace.
Barb
I am finding that keeping a blog is having a profound effect. I think I've mentioned it before, but it's true. I find myself thinking of what I will write the next time I post. And then I start writing and find that it takes me to places I haven't visited in a very long time or a thought that meanders a bit. I apologize if it seems that way to the reader, but it is easier to for me to write it in this way. I also firmly believe that God is helping me pen this blog. He knows my struggles and every thought I have. And it helps me.
I met Dr. Susan Krasner for the psychological "test", whatever it was. We talked for a bit and I explained my anger at my doctor, and my own firm belief that I was mentally sound. As we talked I know I had little nibbles of fear that perhaps I did have some evil thing in my brain. But the more we talked the more I knew I was all right. She affirmed this by saying she didn't see any signs or red flags. So she put me in a room gave me the paper test and left me alone for some time. I don't remember exactly what the questions were, but there were statements and I had to rate them with a yes or no, sometimes, usually or always. Questions like, " I feel so badly some days I wish I were dead". "I like flowers". I remember wondering what the heck flowers had to do with anything. Dr. Krasner told me afterwards that the questions you think are important really aren't and the ones you wouldn't think have anything to do with anything were somehow the important ones. I left that session feeling confident that I was okay. She also assured me that she didn't think anything would come up, but I made an appointment for the following week to get the results.
While I remember feeling positive, I also remember that each day that passed seemed to grow longer and farther away from the life redeeming surgery to implant the Neuro-Stimulator. I often felt that God was against me. Taking his time with my pain. I didn't understand it and it made me mad.
I had been working in my church for about 10 years at the time. I had always used music as my prayer, and I tried so hard to help the people of my parish to pray in song. To enhance the liturgy. It was always my mantra. I never took weekends off. I played for every funeral and wedding and other special day. The only time I was off was when I was having surgery, and even then, I would go back as soon as I could. That job was my sanity. It was a "job" but it was a ministry that I believe God had led me to.
Let me veer away from my topic for a moment and explain a little about my career. As a high school student, I didn't enjoy school, I was not popular and I wasn't anything close to looking like a girl. This has been affirmed through the years as my children have tried to find pictures of me as a youth and laughing hysterically. I tried to keep things far away from their eyes, and in fact had done the same with Dan. Looking back, I am not so sensitive. I suppose we all feel awkward at that age, but some feel it more. I guess you could say I was the victim of some "bullying". When I was in 6th grade, a group of "popular" kids had made up a song about me. Something about a monkey. It was very hurtful and stayed with me for a very long time. It is amazing the things that shape us. I remember several years ago being at a Christmas party with family and friends, and a girl who had been in that "popular" group. She remembered the song, and started singing it as she laughed remembering it. I am sure it was done in harmless fun, but it hurt me deeply, even as an adult. Those sorts of things get embedded in our heads and never really leave. I remember the joking around the table as I turned red and literally got sick to my stomach. I know I asked Dan to take me home and he didn't understand until I explained it to him. He tried to explain to me that she was "just that way", trying to ease my pain. Maybe it helped. I don't know; It still hurts.
At any rate, when I graduated from high school, I thought I wanted to go to college to be a writer. No one told me or encouraged me to go into the music or art fields, the only things that I did like about high school. At that time when you met with your student counselor, they just shuffled you through the system, not really making suggestions about possible career choices. So I went to our local school, SUNY at Fredonia. It is a music school. But it was cheap. And I had to put myself through school. I come from a family with 8 children. So our parents had instilled in us a good work ethic, making us work as strawberry pickers and grape tie-ers, we worked at age 12. It was a given. So when each of us graduated to college, there was no question of us not going, but there was also no questions of our own financial responsibilities. So off I went to school, hating it, yet going every day to earn a degree in Children's Literature. A degree I had to create on my own because Fredonia did not offer this as an option. The music buildings were on the other side of the campus, and I had little interaction with other students or activities. I was a commuter. I went to class and went home. I had one best girlfriend that was also from Fredonia and attending the college. Julie. We had been friends in high school, and found one another to be so valuable that we are still life long friends. She is even Daniel's Godmother. She is another sister to me, perhaps even closer. We stuck together like glue in those days, drinking, boyfriends, socially, confidentially. When we graduated, she moved to Buffalo, got married and got a job as a CPA. I graduated, got a job and went to work in a Jewelry store. I wasn't writing.
I was raised as a Catholic. I went to church every Sunday, sat with my large family, belonged to the CYO as a high school student. When Dan and I started dating, it was "cool" to go to church with your boyfriend. We had belonged to the same church and had never known each other. I had gone to public high school, and he had gone to the Catholic high school, so it wasn't unusual that we wouldn't know one another. We actually met at my sister Karen's wedding. He was one of Larry's groomsmen. I used to keep a journal, and I remember writing the night after the wedding that I thought Dan was the man I was going to marry. I didn't know why. I didn't even know him. But some eight months later we started dating. That story is a whole other episode.
So, some time after Jenna was born, I decided to join the church choir when the "little old lady" was told she must retire because of health and not being able to climb the stairs any longer. She was an old timer. She probably had no actual training, but had been there for as long as I could remember. A new organist was hired and it seemed the right time. After only a few years, he relocated to another state, and because I was able to play the piano I begged Fr. Dan to give me a chance. He hired me. I was awful. I took lessons from a great organist from the college. He came to St. Anthony's every week to teach me. Little by little I learned to tranfer the knowledge of the piano to the organ. I also sang. Loud. And a lot. I was leading the congregation. It was wonderful. Something was awakened in me. As I learned the technical skills of playing and directing a choir, I found my faith mulitiplied by leaps and bounds. I went to workshops, I learned my way through. The people of my parish were very forgiviing for my stumbling of missed notes, playing to loudly or not loud enough. That support was a saving grace. It lifted me up, confirming that I had made the right decision and with the help of the church and Fr. Dan, I went back to the Music School at Fredonia and worked on my music degree. While I learned a lot, I didn't get the chance to finish, as by that time, Ben was a toddler, Jenna was in school by then, and I found out that I was pregnant with Daniel. And I was still working, now as a menswear buyer at a department store called Sidey's, now closed. With the hard pregnancy and the store closing, my job as music director became my full time job. And I took it seriously. Picking hymns for each week was a job of searching for the right songs to fit the weeks readings. And in Fr. Dan I had a weekly table talk and coffee to talk about what he was preaching and teaching about. That was a good time. I hadn't been told I had cancer. I hadn't started having back issues. I even taught in the Catholic elementary school for a year before Fr. Dan wanted me to take on more responsibilites and become the Liturgy coordinator. Things were good. My faith was strong and I had come through that educational floundering some 10 years after I had originally graduated from college. That was all before my back betrayed me. I missed Christmas, Easter and Thanksgiving mornings with my family to be at church. They followed me though. We managed to adjust our home time to make everything work. The kids often came upstairs in church and sat on the organ bench with me. Ben learned his love of music in church. In fact, I was pregnant with him the Easter Sunday he was due to be born. He waited until after Easter and was born 3 days later. He is today and accomplished musician. He is naturally gifted. I had to work at learning music. He seemed to pick it up so much easier. Today he often plays in church. And when he sings... he has a voice blessed by God. This I am sure of.
As I meandered off my topic of surviving, I look at these words I have written and realize that in a way, music was my savior. God gave me this gift to share and I have done it willingly and longingly. It has always brought me closer to my God. It has shaped my life and the lives of my family. If Fr. Dan had never given me a chance, I might not be in this place that I am today. It cemented my faith. When my back and legs became an issue, always, always, I played. And I sang. I prayed. I longed for peace.
As I have drifted off my topic so completely now that I think I will take a break and come back a little later to continue with my psychological test and what transpired after it.
I wish you peace
Survive
Barb
I met Dr. Susan Krasner for the psychological "test", whatever it was. We talked for a bit and I explained my anger at my doctor, and my own firm belief that I was mentally sound. As we talked I know I had little nibbles of fear that perhaps I did have some evil thing in my brain. But the more we talked the more I knew I was all right. She affirmed this by saying she didn't see any signs or red flags. So she put me in a room gave me the paper test and left me alone for some time. I don't remember exactly what the questions were, but there were statements and I had to rate them with a yes or no, sometimes, usually or always. Questions like, " I feel so badly some days I wish I were dead". "I like flowers". I remember wondering what the heck flowers had to do with anything. Dr. Krasner told me afterwards that the questions you think are important really aren't and the ones you wouldn't think have anything to do with anything were somehow the important ones. I left that session feeling confident that I was okay. She also assured me that she didn't think anything would come up, but I made an appointment for the following week to get the results.
While I remember feeling positive, I also remember that each day that passed seemed to grow longer and farther away from the life redeeming surgery to implant the Neuro-Stimulator. I often felt that God was against me. Taking his time with my pain. I didn't understand it and it made me mad.
I had been working in my church for about 10 years at the time. I had always used music as my prayer, and I tried so hard to help the people of my parish to pray in song. To enhance the liturgy. It was always my mantra. I never took weekends off. I played for every funeral and wedding and other special day. The only time I was off was when I was having surgery, and even then, I would go back as soon as I could. That job was my sanity. It was a "job" but it was a ministry that I believe God had led me to.
Let me veer away from my topic for a moment and explain a little about my career. As a high school student, I didn't enjoy school, I was not popular and I wasn't anything close to looking like a girl. This has been affirmed through the years as my children have tried to find pictures of me as a youth and laughing hysterically. I tried to keep things far away from their eyes, and in fact had done the same with Dan. Looking back, I am not so sensitive. I suppose we all feel awkward at that age, but some feel it more. I guess you could say I was the victim of some "bullying". When I was in 6th grade, a group of "popular" kids had made up a song about me. Something about a monkey. It was very hurtful and stayed with me for a very long time. It is amazing the things that shape us. I remember several years ago being at a Christmas party with family and friends, and a girl who had been in that "popular" group. She remembered the song, and started singing it as she laughed remembering it. I am sure it was done in harmless fun, but it hurt me deeply, even as an adult. Those sorts of things get embedded in our heads and never really leave. I remember the joking around the table as I turned red and literally got sick to my stomach. I know I asked Dan to take me home and he didn't understand until I explained it to him. He tried to explain to me that she was "just that way", trying to ease my pain. Maybe it helped. I don't know; It still hurts.
At any rate, when I graduated from high school, I thought I wanted to go to college to be a writer. No one told me or encouraged me to go into the music or art fields, the only things that I did like about high school. At that time when you met with your student counselor, they just shuffled you through the system, not really making suggestions about possible career choices. So I went to our local school, SUNY at Fredonia. It is a music school. But it was cheap. And I had to put myself through school. I come from a family with 8 children. So our parents had instilled in us a good work ethic, making us work as strawberry pickers and grape tie-ers, we worked at age 12. It was a given. So when each of us graduated to college, there was no question of us not going, but there was also no questions of our own financial responsibilities. So off I went to school, hating it, yet going every day to earn a degree in Children's Literature. A degree I had to create on my own because Fredonia did not offer this as an option. The music buildings were on the other side of the campus, and I had little interaction with other students or activities. I was a commuter. I went to class and went home. I had one best girlfriend that was also from Fredonia and attending the college. Julie. We had been friends in high school, and found one another to be so valuable that we are still life long friends. She is even Daniel's Godmother. She is another sister to me, perhaps even closer. We stuck together like glue in those days, drinking, boyfriends, socially, confidentially. When we graduated, she moved to Buffalo, got married and got a job as a CPA. I graduated, got a job and went to work in a Jewelry store. I wasn't writing.
I was raised as a Catholic. I went to church every Sunday, sat with my large family, belonged to the CYO as a high school student. When Dan and I started dating, it was "cool" to go to church with your boyfriend. We had belonged to the same church and had never known each other. I had gone to public high school, and he had gone to the Catholic high school, so it wasn't unusual that we wouldn't know one another. We actually met at my sister Karen's wedding. He was one of Larry's groomsmen. I used to keep a journal, and I remember writing the night after the wedding that I thought Dan was the man I was going to marry. I didn't know why. I didn't even know him. But some eight months later we started dating. That story is a whole other episode.
So, some time after Jenna was born, I decided to join the church choir when the "little old lady" was told she must retire because of health and not being able to climb the stairs any longer. She was an old timer. She probably had no actual training, but had been there for as long as I could remember. A new organist was hired and it seemed the right time. After only a few years, he relocated to another state, and because I was able to play the piano I begged Fr. Dan to give me a chance. He hired me. I was awful. I took lessons from a great organist from the college. He came to St. Anthony's every week to teach me. Little by little I learned to tranfer the knowledge of the piano to the organ. I also sang. Loud. And a lot. I was leading the congregation. It was wonderful. Something was awakened in me. As I learned the technical skills of playing and directing a choir, I found my faith mulitiplied by leaps and bounds. I went to workshops, I learned my way through. The people of my parish were very forgiviing for my stumbling of missed notes, playing to loudly or not loud enough. That support was a saving grace. It lifted me up, confirming that I had made the right decision and with the help of the church and Fr. Dan, I went back to the Music School at Fredonia and worked on my music degree. While I learned a lot, I didn't get the chance to finish, as by that time, Ben was a toddler, Jenna was in school by then, and I found out that I was pregnant with Daniel. And I was still working, now as a menswear buyer at a department store called Sidey's, now closed. With the hard pregnancy and the store closing, my job as music director became my full time job. And I took it seriously. Picking hymns for each week was a job of searching for the right songs to fit the weeks readings. And in Fr. Dan I had a weekly table talk and coffee to talk about what he was preaching and teaching about. That was a good time. I hadn't been told I had cancer. I hadn't started having back issues. I even taught in the Catholic elementary school for a year before Fr. Dan wanted me to take on more responsibilites and become the Liturgy coordinator. Things were good. My faith was strong and I had come through that educational floundering some 10 years after I had originally graduated from college. That was all before my back betrayed me. I missed Christmas, Easter and Thanksgiving mornings with my family to be at church. They followed me though. We managed to adjust our home time to make everything work. The kids often came upstairs in church and sat on the organ bench with me. Ben learned his love of music in church. In fact, I was pregnant with him the Easter Sunday he was due to be born. He waited until after Easter and was born 3 days later. He is today and accomplished musician. He is naturally gifted. I had to work at learning music. He seemed to pick it up so much easier. Today he often plays in church. And when he sings... he has a voice blessed by God. This I am sure of.
As I meandered off my topic of surviving, I look at these words I have written and realize that in a way, music was my savior. God gave me this gift to share and I have done it willingly and longingly. It has always brought me closer to my God. It has shaped my life and the lives of my family. If Fr. Dan had never given me a chance, I might not be in this place that I am today. It cemented my faith. When my back and legs became an issue, always, always, I played. And I sang. I prayed. I longed for peace.
As I have drifted off my topic so completely now that I think I will take a break and come back a little later to continue with my psychological test and what transpired after it.
I wish you peace
Survive
Barb
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