Sunday, June 22, 2008

We all take our life for granted. We breathe, smell, taste, walk and talk without realizing what we are doing. When do we stop and take time to listen and enjoy our surroundings? To take a long walk, read a good book, to take a vacation without taking work with you. When something bad happens to us is when.

I went to see my doctor when I thought I had bronchitis, it seems so long ago now end of Feb 2005. We need you to do another x-ray, then another and another. Why? Something looks suspicious. You have water in your abdomen. You know that water in the abdomen is not good. Your body takes over for you. You really can't concentrate on anything. This just isn't happening to me. You search for answers on the Internet. What are the causes ascites ? Heart problems, kidney problems, infection, or cancer. Then the final "What did I do to get this?" and "Why?" You hear the doctor say" You have Ovarian Cancer Stage 4." Your brain turns off and keeps repeating "Cancer" over an over as you cry together in his office. Did a lot of crying. Everything is a blur. My doctor is in Family practice, an not a specialist. Need a specialist.

Do I go to Duke University, or Wake Forrest. I did pray the entire time I was having the tests done, which started March 5, 2005. As we sat in his office on April 6th 2005, we talked options. I liked Duke and Wake Forrest Medical Center, they have the best research centers in the state. He said his friend is a cancer specialist at Duke, but he also comes to Greensboro twice a month to Wesley Long Hospital to do surgeries. So he set up the appointment. Doctor agreed with all the results. He said we should do it as soon as possible, next week. Next week I wasn't even digesting what I heard and now next week for major surgery. I almost said yes, but Mike was not home. He was away on business overseas. I needed time to think, Mike needed time to come home. I did talk with him on the 4th, it was so hard to tell him when he was overseas. So far away. It seemed like a million miles. What a shock that had to be to him, when I called and said I'm sick and they think I might have cancer, Ovarian Cancer. The doctor was talking and faintly I heard him say "How about April 19, 2005" for surgery date and I said all right. Life as you know it is never the same again.

So much to do in so little time. My husband was over seas at the time. How I dreaded calling him and saying " I have to have surgery. I have cancer of the ovary." The dreaded word we all fear to hear, Cancer, but stage 4, the worst possible stage to have. They would do surgery to take what they could, then maybe have chemo or radiation, or both, but at what cost to quality of life. I don't want to be a burden on any one. Will have to see if it metastasize anywhere else. If it did I don't think I will do anything more then surgery and maybe some chemo. Stage 4 not much they can do, mostly palliative, to do what they can to make you comfortable. Working as a nurse long ago has blessings and curses. Ironic when I did work I was on a floor that took care of people with Lung cancer, Brain cancer, Lung problems. When I worked overseas I worked with all kinds of Cancer. some I had never seen at all here in the U.S. Then all the questions of why me? How do I tell them? do I call my family up north or wait? How can I do that? Am I going to die? and finally, Am I ready to die? So many questions, some without answers keep swirling in your mind like a tornado. You try to sleep and questions are still there, your body goes on automatic, like your in a dream and you will wake up and this won't be happening to you.

My husband who is my best friend, listener, lover, always there for me , to say I might die from this. It was the hardest thing I had to do in my life. Just as hard for me to tell my younger son. He said Mom you are going to be fine. I just know it. My sons are so young and full of life. I really could not tell my older son at the time, just couldn't. He was away at college in Boston. Mike wanted to tell him, I said no. He doesn't need this extra worry at this time. At the time of my surgery, he was studying for finals. He found out after my surgery was finished and his finals were done. He was so angry about that, but I did not want me to get in the way of his exams. I did not want him to have the added pressure of having to take his exams at a different time. I did not want him to worry about me at that time. There would be plenty of time for that after he was finished. He came home after the exams to help out. He also said mom you are going to be fine.

You start thinking about the things you are going to miss out on. The blue skies, stars at night, butterflies,sounds of laughing and the water from the fountain in the pond. My younger son wanting to learn how to drive. Him dating. Him graduating from high school, and college. Him opening up his automotive shop to work on cars. Him getting married and having children. My older son graduating from college. Starting his new job. Getting a house. Getting married and having children. Me missing out on my sons weddings and grand kids. Watching the final games on TV. with Mike, be it basketball, football or soccer. Sitting and talking to one another. Not taking trips with my husband. We love to travel. We have been to several places I really wanted to see. I really got short of breathe and tired, but took my time. I put it all to mid-life aging, it wasn't. Retiring in an exciting place. Leaving behind the people that you love very much.

We all have some belief of a power greater then ours. Faith..we never really grasps it meaning, until we are faced with trouble, sickness or death. I reached out for more comfort, in those two weeks before my first surgery. Reading the Q'uran, praying and believing that I would be all right. A lot of people prayed for me from all over the USA and over seas. I always believed in God from when I was younger and prayed. I am not going to die, not yet. After much soul searching and praying, I made peace with myself. I placed my life into the hands of God.

I remember seeing the ceiling rush by going to my room for a brief second and thinking.I made it. Thank you God. I said it several times. My surgery was long 11 hours. The doctor said eight ,he ran into some problems, because it wasn't ovarian. He wanted to try and get everything out he could out. He came in and said there is good news and bad news." It wasn't Ovarian Cancer, It was Pseudomyxoma Pertionei ( PMP ) Cancer of the appendix a very rare cancer 1 in a million people get this." He removed my uterus, Fallopian tubes, ovaries: my right one had a tumor on it that weight 10 pounds; cervix, (complete hysterectomy), appendix with a small piece of cecum, wedge piece of stomach, two-three liters of mucus fluid, scraped my liver, spleen and diaphragm from mucus build up. I asked him if he got it all out, and he said yes. I believed him.

Moving was very interesting. I did have a morphine pump to help with the pain and moving. They get you up so you don't get pneumonia. While sitting in the rocking chair, I had what I called the hot flash from hell. I had a fan on me, two wet wash cloths one on my neck and the other I was wiping my face I was cold and had a blanket around my shoulders.. All of a sudden my feet felt hot, then my legs, arms, chest. I took off the blanket, re-wet the wash cloths; put one on my neck the other on top of my head. I felt a swoosh of heat starting at my feet and went out the top of my head. The two wash cloths were dry To this day it was the only one I had.

The doctor ordered Effexor. Interesting pill. It is used for depression, but it can help people who have hot flashes. Yeah right. I took it in the morning. That evening Mike was getting ready to leave to go home for the night,. Him andChristie was taking turns spending the night with me. That night I was going to be by my self. Mike just left and panic settled in. Could not sleep. Kept hearing " Don't fall asleep, you will not wake up." Felt like I was sleeping, but saw dark clouds swirling around me. I heard myself say interesting. Could not see anything.The clouds were going up. I remember looking up at them, big dark clouds swirling like a tornado, then I looked down. I was standing on smooth rock. There was an edge, I walked closer to it and looked down. It was pitch black in the middle with the clouds swirling up. There was no bottom.. I just knew that there wasn't. I was standing there just looking, my toes where on the edge of the rock. I did hear some one say-" go head and jump", but I just stood there. I heard myself say that is surely a long way down and it has to be bottomless. I clearly heard someone say " If you jump, you will not wake up." I woke up and was shivering, and felt jumpy. I called Mike who just arrived home a little while ago, and asked him to come back. He did. I did not tell him or anyone what I felt or heard or saw. Just told him I felt uncomfortable. He sleep in the chair beside my bed, facing me, so if I woke up I could see his face. I held onto his foot and slept a very deep sleep. Never took Effexor again, never will. You have to be real careful when they order medication for you. It may work which is great, or in my case you may have side effects that you have to tell them so they can discontinue it.

A couple of days before I went home, I had trouble breathing, around 2 am I had the head of the bed all the way up. I was wheezy and it was hard to breathe. I called the nurse, she went and called the on call doctor. She came back with an inhaler. I told her that I needed more then that. Around 6 am he finally ordered an nebulizer treatment. That really helped some. My doctor came in around 8 am. He thought I might have developed a pulmonary emboli. They ran tests, and gave me I.V. Lasix . The Lasix really help, didn't know one person could go to the bathroom so much in one day. It got rid of the excess fluid built up and I felt so much better. He ordered a cardiologist to came by. He ran some tests. Then the cardiology doctor said" you had a heart attack with in the last 4 months and you have left bundle branch block (L.B.B.B). I want to do a cardiac cath tomorrow." I declined, I still could not totally lay flat, which you have to do for the cardiac cath . He tried to have it done before I left the hospital, I did not have it done. In a matter of 10 days I was told no you don't have ovarian cancer, just P.M.P, you had a silent heart attack, L.B.B.B. and asthma. He started me on heart medications.

I knew when I had the heart attack, at the end of January 2005. My brother Wayne had died in the beginning of January. I drove to Pittsburgh from Greensboro to see him before he died. I had a feeling that he was going to die when my sister called to tell me he wasn't doing good on the 31st of Dec. I set my clock for 6 am to get up and leave to go and see him one last time. I knew he did not want me to come earlier, he did not want me to remember him that way. Usually takes 8 -9 hours depending on how often I stopped. Looking back now, realize why I had to stop so much..the extra fluid building up in my abdomen pushing on my bladder. Made it in 7 hours by the grace of God who was driving. When I came back to Greensboro, did a lot of crying. Felt stressed, uncomfortable across my back and shoulders. Stayed that way for week. Did not think that it could be caused from the heart at the time. Was watching TV one evening rubbing my shoulder and felt a pop in my neck, all the stress and tension went away.

During my 3 week check up we had to decide the next step. The cardiologist wanted to do the cardiac cath. I still could not lay flat long enough to do it. I said no. never went back to him. At the time I did not know that there was other doctors who deal with PMP, but I knew I needed a specialist Did some reading on the Internet , found a video of the surgery that was done in Italy and saved the bookmark, but at this time could not watch it. video of it. We where referred to a doctor at Wesley Long. We went for my appointment and he reviewed everything, but was at a loss about what to do. He printed off some information for me to read, which I did. It was from Dr.Surgarbaker . Then said maybe we should try Wake Forrest. He would bring up my case in the Tumor board meeting and then after seeing the doctor at Wake we could make a decision. Read the small article of Dr.Surgarbaker , then did a search of him and read all the information I could. It was disturbing, at least, you loose a lot of internal organs. He was in Washington, 4 hours away. That would be hard to do. Where would I put my son? Would I go alone? I don't think so. My family is in Pennsylvania. It is just us and friends here.Went to see Doctor Levine in June 2005. Had a long list of questions for him and so did Mike. He examined me, and then we talked. We where there over an hour. Listening and asking. He sent the ct scans, x-rays , pathology slides and blood to be reviewed by his doctors at Wake. Before we left he had given me information to read about the surgery and chemo. He told me that the other doctor did not get everything out and I would be a good candidate if I decide to go ahead. Just call to make the date for the surgery. He would take out what was needed and no more. June 16th had a check up with a cardiologist at Wake to see if I could have the surgery done and also had a colonoscopy to see if it invaded or had colon cancer.

June 20 was the re-evaluation from the doctor at Wesley. It was an interesting visit. Told him what the doctor said then asked what the Tumor Board said. He said he did not present me to the meeting since I was going to see them at Wake Forrest. I felt like I was in the middle of the ocean swimming helplessly alone with out a lifesaver. I felt like I slipped down a large hole with no where to escape. I was angrily, wanted to cry, scream all at the same time. I felt that he a doctor had totally abandoned me. I blocked everything out, but I did hear Mike say to him "She will be alive in 10 years." That doctor had given me 6 months to live. We left never to see him again.

You really have to trust and believe in your self, but also your doctor. You are going to see him for a long period of time- at least 5 years-and it has to feel right between you and him. You are trusting him with your life. He has to have experience in what he is doing. We went home , I read the information Dr. Levine gave me. PMP does not act like most cancers. Most cancers spread in three different ways: (i) by invading nearby tissues, ·(ii) via the bloodstream, ·(iii) via the lymphatic system. PMP, however, spreads along the internal surfaces within the abdomen, rather than into nearby tissues such as the bowel or liver. Its mucus, a jelly-like substance, collects in the peritoneum, a kind of lining of the cavity of the abdomen. It may be many years before symptoms of this type of cancer manifest themselves. He told me that I probably had this for more then 4 or 5 years maybe 6. The information he gave me was blunt, you could die on the table, from complications from the chemo or surgery. The chemo is heated to 104 degrees F. then put into the abdominal cavity for 1 and half hours after the surgery is completed. I also seen my first doctor for his opinion and he had a suggestion of 6 months of intra-abdominal chemotherapy 5FU and then wait and see. I finally watched that video from Italy, the whole surgery, to see what would happen, to understand. I listen to others and their suggestions, but it all comes back to you. You have to make the final decision. You are having the surgery, You are having the new chemotherapy. You might live... but you may also die.

I made a Will and a Living Trust Will . The Trust will was for my own peace of mind. I knew what I did not what if it came to me being in a coma for the rest of my life and gave Power of Attorney to my husband, to carry out my wishes. I went to see a cardiologist at Wake who worked me up to see if I could have the surgery or not. If my heart could not take it, I could not have the surgery. I passed. I asked him if I needed a cardiac cath and he said no. My problem was more electrical. Eventually I will need a pacemaker. I never went back to the other doctor, called him and said I have a new cardiologist.

On August 20, 2005, I had my second surgery which was also 11 hours, but 4 of it was chemo. This time he took out my spleen, intra-abdominal tube for drawing blood-or to do chemo, small lobe of liver, gall bladder, wedge of my diaphragm, my appendix decided to regrow- took larger piece of cecum. Also had some nerve damage to my left leg. When they first tried to help me out of bed, I collapsed onto the chair barely making it. I could not feel or use my left leg from my knee down. Complication from a long surgery. Had physical therapy while in the hospital. Had a lot more tubes. Really hated that N-G tube, feeding tube, had a chest tube, tube into bladder, 2 drainage tubes, plus IV and oxygen mask. By the 5th day most where gone. Had some vaccines that I will have to take again in 10 years. Had to use a cane for walking for a while. Could not lift my leg, if my life depended on it. Had to exercise it regularly. Needed help to get up from the couch or certain chairs. Fell 3 times when I had gotten home. Chalked it up to a new learning experience, on what not to do. Took time with my walking at first, always looking down to make sure I would not fall.

4 weeks later went back for a check up. CT Scans, x-rays, blood work where all done again. It was real scary, I knew if my blood work levels did not drop..he did not get it all. I was nervous, and still get that way when I go for a check up. What if something showed up on the scan or x-ray. I was sure before we arrived that it was gone, but waiting in the doctors exam room for him to come in is an eternity. Questions go running through your mind again, even if you fell everything is all right. He came in examined me. Helped me up and said "You made our office proud. I see nothing, no evidence of growth of tumor or mucus any where. Blood levels dropped." I was so happy I hugged him. Then we said thank you very much. Mike was with me.

Most of 2005 I don't remember, parts of 2006 and 2007. I know I was sick and some of my pictures I look like death warmed over, but I survived. Having 2 surgeries within 4 months of each other took a toll on my body and strength, I was overweight to begin with. Lost weight. Really did not have an appetite until Jan 2006. Then it really came back, gained the weight I had lost due to surgery and chemo. I slept most of 2005 away, tired, no appetite, but slowly I came back. I slept downstairs on a inflatable bed for the first surgery it was 2 months or longer. I couldn't go up the stairs in the house. I still remember the first time I did that. Took each step one at a time. Made it upstairs and laid down on the bed, that felt so good and went to sleep for an half an hour. Got up and then took a shower, slowest one I ever had, then laid down on the bed and went to sleep for another half an hour. With my left knee weak, I took my time. Could not stand long enough to shower, cook dinner, do the dishes, do laundry, run the sweeper, dust or anything. . I felt better quicker but still had difficulty doing things around the house. We did go to San Diego for a vacation, in between surgeries. I was nice and relaxing. Company came for a week. Mike was away on business had to go and finish the job he had started.. Really depended upon my 2 sons then. Planned for company to be there for the weekend, but found out it was for a week. Sons did the cleaning and cooking as much as possible. So it was hard, I still slept a lot, and was dizzy. Realized that it was from the medications. Needed more food with pills. That was then and things have gotten much better. It took me a year and half to fully recover from the surgeries. I still have problems get short of breathe and tired when doing to much. Asthma only smoked all together 1 packs of cigarettes in my life if. My dad did smoke up to 4 packs a day when he stopped. i lived at home until I was 24. Both brothers smoked. When I started working there was only 3 of us who did not smoke There are plenty studies out now about the effects of second hand smoke .. causes asthma. Get tired spells, just takes me over and have to sleep. Will be getting that checked out.

It will be 3 years in August 2008, since I had the 2nd surgery and heated chemotherapy. I feel great. My C.T.Scans X-Rays and blood work have been normal. My eldest graduated from Northeastern University in May 2008. I am so proud of him. He took off 6 months of school to come home and help out. I am grateful for that. Now sometime this year he will be moving to New York, a little closer to home, to start his journey of life. I really found out that I love Boston. It is a beautiful city to explore and visit. Now I get to discover a new city.. New York Washington Heights. His girl friend goes to Columbia University. He will getting a job close by. My other son is now a senior in high school. He is driving. Still wants to work on cars. So we will be here in Greensboro for at least 5 years. Then we will be off to some other place to live for awhile then who knows.

Thank God for Mike and my sons..How he hates the hospital. He was with me every day, as much as he could. He and Sam would take turns staying the night for the second surgery. Mike was with me most of the time for the surgeries, but I could see how it was affecting him. He looked tired, worried, but he never said he was. He kept saying you are going to be all right. He was my strength and my rock through all of this. I remember my appetite was lousy and I got hungry for a strawberry milkshake from Cook Outs and a slice of New York pizza. He went and got them for me with the doctors ok. Doctor said anything that would help me eat and help start moving the bowels would be all right . Cookout and New York Pizza are on opposite sides of the city, but he went for me. I will never forget what he had done for me. My boys did the best they could, they also hate hospitals. They are the future, they gave me a different source of strength and courage to fight on.

To the question of "Why?"..."Why not?" God will not give me more then I can handle and with Him I can handle what is given. It took some time to really understand that, but I know now that I can handle what is given to me. I did not say that it would be easy, sometimes it might be. This time it was hard ...to really face death and to come to terms with it, accept it and say ... I am ready to die. You never know what the outcome will be when you go to surgery. You expect to come out, but some don't.

Really how do we know where we will be in 5, 10 or 20 years. God willing I will be around to make it for 10 years after surgery. I will be 62 years old...oh my.. I will be getting old. lol :) I did have my doctor from Duke University and the other from Wake Medical center. I had the best with out even realizing it at the time. Prayer does wonders. Could not have survived with out faith in God and know that there is a plan for me, it might not be the one I had in mind , but his.