Not So Happy Patient

I had surgery to lop off my ovaries and breasts a few weeks before Christmas 2007. We checked in at 6 am for a Sentinel Node location procedure in radiology. This is where they inject blue radioactive material around your tumor and then give it time to find its way through your lymph system to a node which is called the sentinel one. You have up to 40 nodes under each arm did you know that? I had a very caring radiologist who did a wonderful job of numbing me up before the injections, which others had warned me would be a painful deal. Later, using imaging he located the node and marked an X on my skin so the surgeon would know where to dig. Then John and I waited in a curtained pre-surgical area for 5 hours for the surgery. I had not had surgery before and was frightened even after they infused the Versed (which is supposed to relax you and then makes you forget what happens prior to putting you under) and I remember being wheeled into the freezing cold operating room. Next I remember waking up to a nurse saying everything is fine and that I would be getting a private room. Wow, I thought, that is really cool. Then, after having two fantasic nurses the first 24 hours, who went about their tasks of caring for me with efficient skill, my expectations that the excellent care would continue were high.

My surgeon disturbed me when he visited. Each time he blew into the room, the day after surgery, he’d complain of his long day, how he wanted to go home, and talk of love of his alma mater’s football team. He also lamented my low blood counts stating that his surgery had gone beautifully and that the surgeon who removed my ovaries must have left a bleeder. His examinations were brusk and John and I couldn’t get a word in edgewise. He also stated for the ump-teenth time that I should have gone forward with breast reconstruction during the surgery because it was not a big deal, and I was young, and the plastic surgeon was the best. I had cancelled the insertion of the implants at the last minute just prior to surgery, after my oncologist who we met with until late in the night the night before, said it was just too much surgery and we needed to see if I had cancer-free margins. My surgeon does not like my oncologist, Dr. Judy Schmidt because she is not part of the conventional Montana Cancer Center machine here in Missoula. I found out the next day that he was not forwarding his doctors notes to her even though I told him that I had chosen Dr. Schmidt over the oncologist that he favored at the Montana Cancer Center.

Early afternoon the second day, just after John had left the hospital for a few hours and my sister went back to work from her lunch hour visit, my surgeon came into my room. He pointed to the TV and said "turn that off I have to tell you something". I did and he came right out with it. “We found cancer in your lymph nodes blah blah blah blah” - I honestly don’t remember what else came after that other than – “and we need to go back in and do a full axillary disection to remove and test the other nodes”. He quoted a study from the Netherlands that said the isolated tumor cells that were found predicted a 30% chance of cancer in other nodes. I sat and listened and thanked him as he left. I immediately called John and Anne and asked them to come back and started to cry. While waiting for them to come back I called my oncologist and cried to her about my surgeon’s blunt bedside manner, telling her I did not want anything more to do with him and to please recommend another surgeon to do the lymph node surgery. Hours of dismay followed. I was hitting a low point as we passed the news on to family. During dinner while I was visiting with my sister and her family who had come to visit, John took a call from my oncologist’s partner. She and Judy had gone to work after my phone call, requesting the pathology report, calling the pathologist for clarification, researching my particular situation and calling experts from around the country. She reported that I was in fact considered lymph node NEGATIVE because the cancer cells that they found were isolated tumor cells, not metastises. The surgery was not recommended by the experts. This was wonderful news! The best news I could have gotten at this point. It also added to my mistrust of my surgeon.

John and I were awaken abruptly at 5 am on day three to a new bumbling nurse and her nursing student brashly telling me "you have been put on NPO, we need to type your blood for a blood transfusion and prepare for surgery". John and I were confused, I had not consented to the lymph node surgery the day before. The nurse did not know anything more, I was to wait until the surgeon came in on his rounds. I felt like a helpless victim, emotionally suffering from low blood counts and anemia caused by the bleed on the left hand side. When my surgeon appeared a few hours later, I was worse off having not been given anything to eat or drink. He said he needed to go back in and try to find where the blood was coming from. It would be no big deal, and in fact easier on him, because my incisions would not have had a chance to close. I begged him to hold off and give me the ordered two units of blood to see if my body could take care of the problem itself. He then made the mistake of quipping "I probably couldn't have found the bleed anyway". This infuriated me. His cavalier attitude and lighthearted banter might work with other patients, but not me.

The bumbling nurse returned a few hours later with blood and began to set up the IV system. She began to have problems with the machinery, and she complained outwardly her frustration with the machine and not knowing what to do about it, for some time. I knew just enough from my pharmacy classes that giving blood to a person is not a low risk deal. Any mismatch in typing, air bubbles in the tubing or exposure to free floating bacteria has dire consequences for the patient. Each curse from her made me more fearful. When she spilled the blood on my arm and tray table while swtiching to a new machine I wanted to cry. My eyes pleaded to my mom what I couldn't say in words. I wanted scream "Get her away from me! Get someone else. Please let me go home.". Instead, I closed my eyes and cried inside. The transfusion ended up fine and I was revived by the fresh blood and avoided additional surgery. But the frazzled nerves remained and I mistrusted her for the rest of my stay.

Late that night I hit bottom. I was to have a second bag of IV antibiotics. My IV site was very painful. A new male nurse said he would need to put in a new IV, the vein was about to blow from all that had been pushed through it. I lost it and balled and pleaded with him to call the doctor to ask if I could have antibiotics in pill form. My request was granted and I was able to leave the hospital the next day.