I DID NOT GIVE UP, I WILL NOT GIVE UP
I have wanted to write for so long now but the words do not come and when they do there are times the tears come with them. I had promised to share this journey of life honestly and hope that it might help others who suffer difficulties. There were plenty of words and things to share but finding a way to be honest and share things that might be helpful to others rather than depressing and distressing was almost impossible.
It has been almost a year since I wrote a blog. It is not because I did not think of it or care but this has been a year of challenges to stay alive let alone keep hope. Nothing seems to be simple or easy. Complications can kill.
I have lived with such tremendous pain in my spine that there are no words to describe it. Years ago the doctors told me how very sorry they were because I have a degenerating disorder that affects bones and joints. It is a slow process that I have lived with for years but now as I am older the progress and problems have intensified until there is not a day or hour there is no pain. The object is to be able to continue and live life and appreciate all the wonderful blessing I do have.
When they first told me I broke down and cried. It was hard not to slip into a severe depression as I thought about my future. I not only understood what they were telling me but had seen it first had year by year and day by day in my own grandmother and mother. I watched as the pain stole away the happy times when she could have joined in but had to sit back unable to walk or take part in so many things. As the years went by it was like a horror movie in real life as she became a prisoner of her own body. No matter how much family tried to help it was impossible to do at home and eventually she had to go live in a nursing facility. She was a prisoner in her own body. Her mind worked but she was trapped in a body wracked with pain hour after hour, day after day for the years that remained. One day she turned her head and the bones gave way in her neck and it cut the spinal cord.
I hear people say how badly their backs hurt and each in their own way thinks their pain is so much worse than most others. When I say my back hurts it is so intense that it is sometimes hard to breathe. The pain is and was so intense that my blood pressure became uncontrollable. Trying all different medications and dosages helped but the pain continued as the more the pain the higher the blood pressure.
August 24th of last year I wrote a blog about a wonderful doctor that helped not only relieve the pain but restore hope for me and my husband. http://linda-nance.blogspot.com/2015/08/count-my-blessings-part-one-pain-never.html He not only is an amazing doctor but a person of heart and care for others. He has done so much for me there are really no words to tell. He did the same thing for my husband as he suffered head aches that incapacitated he and left him no peace or hope. What can you say about someone who cares and dedicates their life working to ease the pain and suffering of others?
They have always been cautious of pain medication with me because of the limited lung function after they had to remove all of the upper lobe of the left lung. I not only had a mass under the aorta but found masses in the lung and surrounding the arteries that supplied the blood flow for the lung. That was another challenging and difficult time in life.
The pain in the back had escalated to the point it not only hurt and ached but burned in the whole spine. August 17 of last year I woke up with a stiff neck. It was uncomfortable but the next day it really hurt to even try to move it. Albert, my husband demanded I not wait but go in and get it checked out. I felt stupid going to the urgent care medical facility over a stiff neck but we went. One doctor examined me and immediately called another to confer about what they suspected. It amazed me I was getting so much attention over a stiff neck but realized it may be so much more by the way they were acting. I assured them I wanted to know the truth even if they just suspected a problem. I can deal with thing easier if I understand than if people try to protect you leaving me feel like I am crazy to feel so bad if there is nothing to concern me. When they said they were sending me to get an MRI or CT scan I knew they suspected something serious. I demanded to know what. When they said lymphoma my heart sank. I asked when I would have the tests done and they said right then. They had arranged with the hospital to take me right in.
That was the beginning of a long fight. It has been a fight to survive. I thought I would be able to share things here and hope it might help others but I have been working so hard just to live. I have also tried to stay ahead of depression that could steal away the will to live.
The pain in the back intensified as the lymph nodes enlarged along the spine. When I came back to the vehicle where Albert waited to hear what they said, I could not speak at first. The tears could not be held back and I fought for breath before I could say the word lymphoma. I told him that I could not do it. I was not strong enough for something like that. I had lived through so much after a head on collision, lung cancer, stroke, heart attack 4 stints in the heart but lymphoma, on top of all the other things was more than I could do.
We sat quietly in the pickup truck we drive and tears streamed down my face. He sat totally silent. When he finally did speak he asked when they wanted to do the tests. I told him we were supposed to go directly there and that they had arranged for me to go right in. He started the engine and said, “then that is what we are going to do.”
Arrangements were made for a cancer specialist and I have been blessed with an amazing man who is fantastic in his field but does everything he can to ensure my overall safety with all of the other specialists and problems. Dr. Monte was determined to keep me alive. Before they could do anything to help me they had to get a biopsy and see exactly what kind of cell they lymphoma was to design a treatment. That does not sound to difficult. They do needle biopsies, see the cell type and go from there. It often seems as if the things in my life become complicated and difficult. The needle biopsy did not get live cells they could use for diagnostics. I will skip on ahead to September. Every minute we wait this mass was growing. They found not only swelling in the lymph nodes but a mass around my carotid artery, filling the chest area and around the heart. It was growing so quickly and aggressively that it was already pressing on my air way. We could not get a live tissue sample to begin treatment and I felt as if every day I died a little more.
Again I was blessed with a wonderful doctor that was not going to give up on me. Doctor Woodward agreed to do surgery to try to get to living tissue for the diagnostics we needed. They all agreed they had never seen a patient that had such difficulty being able to get a simple biopsy. I always worry about being put to sleep. In my past that has also been an issue that left me on life support. I made it through the surgery with no problems September 23 of last year and eagerly awaited the findings.
I could hardly believe it when they again had no live tissue to examine. They explained that the type of cancer I had was extremely aggressive and fast growing. It was so much so, that the tissue reachable was dead as the cancer cut off the blood supply to the upper tissues. My heart sank, thinking how quickly my life was ending. Every day I felt closer to the time when there was no hope left. Before I could even begin the first surgery I had to work making sure the respiratory would survive the anesthesia. The pulmonologist, cardiologist, the endocrinologist and now Dr. Woodward all worked together trying all they could to help me. They said it was the first time ever it took 4 biopsies and two surgeries to get a diagnosis of the cell.
After all of that I still had to go to surgery and have the port put in for the chemo treatments. That went well with no extra problems.
When they had the live tissue, we prepared to fight the cancer with a full plan of treatments. I knew I would loose my hair and felt that was nothing to stop the cancer. I wrote a blog about that too. I had had long hair for so long but seeing it fall out felt as if I was watching my own body die a little more each day.
When I first came in for the chemo treatment, I was shocked to see how many people there were there, all fighting for their lives. We sat in the waiting room silently waiting for our turn. I glanced at the faces of those around me and could actually feel the extreme emotions. You could see sadness, worry, fear, and some almost looked defeated. You could tell the patients and there were also the loved ones who came with them and the worry in each face. It was time to begin the fight and I was determined not to give up. I was going to do my best to live.
Since it took me almost a year to begin this blog I know I will not be able to do it all tonight but I will be back soon. I had promised to write as much as I could and as honestly as I could and that I will do. I will also finish the book of Art, Words, and Inspirations and the new novel and so many other things that I have in my head and need to get worked so I can hold them in my hands. I will admit that pain is still and issue with me. Some days I can hardly sit up but I will not give up. One day at a time I will live and not just be alive. I am so grateful for all of the wonderful support of family and friends near and far. I have heard from so many of you and seen when you have shared my posts and words for me and it means so much. You too have had a hand helping me to live and feel I have not been forgotten. You have helped me to have a voice when I felt to weak to speak for myself. I thank you all. I have felt the love, prayers, cares and support. With all of the problems and pain I feel I do not walk alone. The prayers have been heard and I am still here, alive, and not giving up.
I will be back again soon and hope you each have a wonderful night and your lives are filled with love and bright times ahead.
I am sharing a few pictures of from then to now and what a journey it has been..