My Check Up and Planning the Next Step

I was healing well no signs of infection. During my two 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. I 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, I found a video of the surgery that was done in Italy and saved the bookmark, but at this time could not watch it. We where referred to an oncologist at Wesley Long hospital. 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 about PMP. Then said maybe we should try to go to Wake Forrest Medical Center. He would bring up my case in the Tumor board meeting and then after seeing the doctor at Wake we could make a decision. I read the small article of Dr. Surgarbaker, then did a search of him and read all the information I could that he had out at the time. It was disturbing, frightening at least, you loose a lot of internal organs if you go to him and it might not work. He was in Washington D.C., 4 hours away that would be hard to do. Where would I put my son? Would I go alone? Could they travel back and forth? Rent a room at a hotel there? I don't think so. My family is in Pennsylvania it is just us and friends here. We went to see Doctor Levine in June 2005. I had a long list of questions for him along with the article from Dr. Sugarbaker and so did Mike have his own questions to ask. He examined me, and then we talked. We where there over an hour listening and asking. He sent my ct scans, x-rays, pathology slides and blood work 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. He was caring, understanding and answered all our questions until we fully understood what the operation involved. 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 the colon or had colon cancer.
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 103-107 degrees F. then put into the abdominal cavity for 1 and half hours after the surgery is completed. I also had seen my first doctor for his opinion and he had a suggestion of 6 months of intra-abdominal chemotherapy 5FU then we would wait to see what would happen with follow up ct scans and blood work. I finally watched that video from Italy, the whole surgery, to see what would happen, to understand. 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 and no one to recuse me. 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 at most 6 months to live. We left never to see him again.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 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. My Colonoscopy was normal and my heart would be able to withstand the chemo and surgery. 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.