In Honor of My Husband, Ron

Friday, May 21, 2010

My turn now...

I was diagnosed with Colon Cancer on April 24, 2010. It all started shortly after I returned home from Missouri in late February. I had been feeling very tired and run down, so I made an appointment with my family Doctor. She ran some blood tests and had me take home a Fecal Occult Blood Test. I returned it the next day and she called and said it was positive. Well, me being me, I decided to ignore it and dismiss it. I was also very anemic and had a very low Vitamin D level. A couple of more weeks went by and I was feeling worse so I went back to the Doctor and got another test to take home. I returned that one the next day, and again, she called and said it was positive, so I needed to make an appointment with a Surgeon for a Colonoscopy.

I had an Endoscopy and Colonoscopy on April 23, and when it was over the Surgeon would not say anything until my son and daughter came back to the hospital. So I knew he had found something, but I never expected to hear that he had found a mass that looked suspicious. The mass was located at the Ileocecal Valve, which is where the small intestine joins the large. He took 3 separate biopsies and the next day I got the call that I did have Moderately to Poorly Differentiated Adenocarcinoma, or Colon Cancer. To tell the truth, it really did not sink in right away. I was more worried about the kids reactions to hearing the "C" word again so soon. It just didn't seem fair. Ron has not even been gone a year and now we have to deal with this all over again?

I had a CT of the abdomen and pelvis on April 28 and a CT of the chest on May 4. The CT of the abdomen showed a right adrenal mass and just accidentally discovered a nodule within the right lower lobe of the lung. That is why the CT of the chest was scheduled. It showed five lung nodules: 3 in the right lung and 2 in the left. It also showed some "suspicious" lymph nodes in the mediastinal area. I felt so bad for my family Doctor. I had an appointment with her the day after the chest CT and asked her if she had the report yet. She checked on the computer and it was there, so I asked her to read it to me. She really didn't want to but I insisted. When she told me about the nodules in the lungs and the lymph nodes, then I started worrying that this was a metastatic cancer. One thing I would like to stress to anyone with cancer is to get copies of all scans, blood tests, X-rays, whatever is done to you. Remember it is your right to ask for a copy of everything. You will find that it comes in handy because you are likely going to have a team of several physicians, and some may not be able to access records from another location.

Things moved very quickly at this point. I met with my husband's Oncologist on May 6, and he said that he thought I was Stage IV and that the lung nodules were more than likely metastases from the colon. We discussed Chemotherapy options and he suggested FOLFOX (which is a mixture of 3 chemo drugs: Leucovorin, 5-FU, and Oxaliplatin) and Avastin for 6 months. If the lung nodules are proven to be cancer, that may add another 6 months of chemo. I had my surgery on May 7. It is called a Right Hemicolectomy, which means that my ascending colon was removed along with about 6-8 inches of small intestine. The small intestine is then reattached to the transverse colon. Luckily, I was able to have this done laparoscopically, with 3 very small incisions and one larger one, as he did a hand-assisted surgery. The first night all I remember is pain. I had a PCA pump with Morphine and I could not wait until the light blinked again. All of my kids were there along with my sister, and they could hardly stand to watch me. My sister, being a nurse, realized that the Morphine was not enough and tried to get the nurses to call the surgeon for something else. We don't really know if they ever did call. They said they did and he would not change the medication. He said he never knew anything about it. My family timed my pain and I had about 4 minutes of relief for every 10 minutes.

The next day the medication in the PCA was changed to Dilaudid, which worked much better, and I was finally able to get a little rest. I stress a little because for one thing, I cannot sleep on my back, so I would try to lay on my side a little bit, but it really hurt so I could not ever get very comfortable. Also, the entire time I was in the hospital, there was construction going on right outside my door. They usually started at about 6 in the morning and went until 10 at night. This is on a surgical floor! I don't know how they expected anyone to get any rest or comfort with all of that going on. It really was a bad experience and I will never go back to that hospital again. There were just a lot of mistakes that went on. I am so glad my family was there almost constantly because we caught several medication errors, my PCA was left with a clamp on it, so I could not get pain relief for about an hour, until my sister actually discovered the clamp and released it.

I got to go home on Tuesday, May 11, thank God. I had gotten my drain removed that morning and almost immediately, the pain went away. If I hadn't had to have a drain, I don't think I would have had much pain at all. It felt so good to be in my own bed, in my own home again. I think I slept for a total of about 6 hours the entire time I was in the hospital, so I slept for a long time once I got home. On May 13 I had a PET scan of the entire body to see if there were any more areas of concern. I also got the word from the surgeon that out of 32 abdominal lymph nodes taken, NONE were positive. I was so happy about that, but also confused. I thought for certain one or two would be positive, especially if it jumped up to my lungs. The PET scan did not show the lung nodules very clearly but the lymph nodes indicated increased metabolic activity. I went to the Oncologist again on May 17, and he said even though the nodules didn't show up very well we could not wait, so he is sending me to a great Cardio-Thoracic Surgeon at St. Luke's in Milwaukee. I know he's great because he did Ron's triple bypass surgery in 2007. My stage is T-4, N-0, M-X.

This surgery will be performed in two stages. The first is called a Mediastinoscopy, where the Surgeon will make an incision much like one for a tracheotomy, then use a scope on the outside of the trachea to get the lymph nodes out. The second part will be turning me onto my left side and making at least 2 small incisions in my right side, so they can access my lung through the ribs. There is one nodule that is right at the bottom of the right lung that he thinks will be easy to get, and he will try to get another if he has a good view. This part is called a Wedge Resection of the Lung. I will have a drain again, but he said I could probably go home in two days. Well, I have been doing some reading, and I doubt that I will be going home that soon. But St. Luke's is a wonderful hospital, and I know that I will have a much better experience there. The surgery date is not yet scheduled, but it will be next week sometime. At least I will get to spend my birthday at home and not in the hospital! The big 5-0 on Sunday. On May 20, I had a follow up with my original surgeon. I showed him an area that is hard and very painful right above the largest incision site. It is called a Seroma, which is a pocket of fluid. It should go away on it's own, but it really hurts. He said to come back next week if it was still there and he would drain it with a needle. I wish he would have done it at the time, as again, that is the only thing that hurts right now.

So that's my story so far. I don't know what will be found next week. One doctor seems to think this is a separate cancer, an actual lung cancer. Another doctor thinks that it is a metastatic cancer from the colon. We won't know until they get some of it out and biopsy it. I hope this will be the end of the operations, anyway. I am going to try my best to do Ron proud. If I could have even a quarter of his strength, I will be okay. There was a long time when I really wanted to die to be with him again. I don't feel that way anymore. I want to be here as long as I can for my kids (and future grandkids)! Everyone please get your Colonoscopies! You never know what may show up. On May 23, I am having sort of an impromptu "open house" for whoever would like to come over (after noon). So if you are reading this and you know where I live, come on by! Smoked pork sandwiches for all!