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!

Cautiously optimistic...

Tuesday, December 2, 2008. It's Ron's 56th birthday today! Guess what he got to do? Have a colonoscopy. What a lucky guy! We were given the choice between having it on his birthday or the day after, in which case he would have been doing the "prep" on his birthday, and as you all probably know, that is the worst part of the procedure. At least now he can have dinner and have a piece of apple pie (his favorite) for dessert tonight. He has gained another 5 pounds since my last post! We went down to Missouri to see my sister and her family over Thanksgiving and she stuffed him like a Christmas goose. Now to catch everyone up on what's been happening since the last post. On Tuesday, November 18, Ron saw the surgeon. He could not see any areas of concern, and his feeling was that the PET scan was done too soon after surgery to be accurate. He told Ron to go ahead and have the other tests done and come back to see him after that. Our next appointment was on November 21st with a Gastroenterologist, to take Ron's history and schedule the colonoscopy. He also did not think there would be cancer found. On November 25th, Ron had his Thyroid scan done.

Wednesday, November 26th was our big meeting with the Radiation Oncologist. It was good to see him again, after 2 years. He gave Ron a thorough exam, and did find a small nodule under his tongue, and had me come and feel where it was. That was the only area that concerned him. He said that he would not agree to re-radiate until we were sure the cancer was back. He told Ron to go back to the surgeon so he could do a biopsy of the area. Only with positive results would he agree to radiation, and he mentioned that it might be a different type than IMRT. If the results of the biopsy are negative, he wants to wait and repeat the PET in January. He also mentioned that Ron has Perineural Invasion, or PNI. I didn't ask anything about it at the time, but have started to search to find out what that means. From what I understand so far, it acts as a scaffold for the cancer cells to spread. We left the RO's office feeling much more positive about the future. There were now three doctors that thought the PET results would be inaccurate so soon after the surgery. Oh, how we hope they are right. Right after the appointment we drove for 8 hours down to my sister's, and had a wonderful time visiting with all of them until Sunday, the 30th, when we drove back home.

Monday, December 1. Ron had an appointment with the chemotherapy doctor today. He said the Thyroid scan was negative. Thank God! One less area to worry about. He agreed with the RO that the surgeon should biopsy the spot under the tongue. Right after this appointment, we had an appointment with the surgeon. He agreed that the nodule was suspicious, but will not do a needle biopsy. Instead, Ron will have outpatient surgery next Monday, where the surgeon will remove the entire nodule if possible, to send to pathology. He said that he is not as certain that Ron cannot be cured of this cancer again, and said that he thought the oncologist was being too "bleak." We just don't know what to think at this point. Ron is very positive about being able to beat this again. I need to draw on some of that strength of his! Today, December 2, Ron had his colonoscopy. The doctor came out and told me that no cancer was found! He did have some small pockets of diverticulosis, but it shouldn't be a concern. Ron can't eat nuts or popcorn anymore anyway without teeth. He suggested more fiber, so I will pick up some supplements, since he also has trouble eating raw fruits and vegetables. So now we wait until Monday, the 8th, to find out the results of the biopsy. Keep praying, please. So far things are looking up!

Post Surgical PET Results

Monday, November 17. We had our appointment with the Oncologist today. The results were not quite what we were hoping for. Ron's latest PET scan now shows three, possibly four more areas of cancer. There are definite areas in the right parotid position, right sublingual, and left thyroid lobe. There was also FDG uptake in the anal area. What this means is that, since the surgery September 30, the cancer has come back in these three areas, and possibly four. The Oncologist really does not think that the uptake in the anal area is anything, but Ron must now have a Colonoscopy to make sure. He also needs a Thyroid scan. The Tumor Board met, and they all agreed that Ron does need Chemotherapy and Radiation again. He will also have a PORT placement again to receive the chemo and for blood draws. So within the next few weeks, we will be pretty busy with appointments.

The Oncologist stressed again that Ron will no longer be cured, just managed. He is planning to use Erbitux for 10-12 weeks. Radiation has not been set yet, but will be soon. The RO is still reluctant, but since the Tumor Board is recommending radiation again, the Oncologist is sure that he will agree. He also agreed with Ron when Ron told him he did not want the PEG tube again. He said that he had the most trouble with that the last time. It makes me a little worried about him losing too much weight, but this is totally his decision. If we get going and he starts losing too quickly, he can always decide that he should have the PEG again. The good news is that he has gained six pounds since coming home from the hospital. I hope to get that number up before treatment starts. If he could, I would like him to gain at least twenty, but I don't know if that will happen! I also told the Oncologist that at some point, we would like to do some traveling around the country, and asked if he would let us know when we should do that. He smiled and said probably when Ron is done with treatment and recovered a little bit we should start.

I am feeling much more emotionally fragile this time around. I'm not sure why, and it is only when I am alone, and start to think too much. When I am with Ron, especially at appointments, I try not to be emotional at all because I don't want to upset him and I need to keep it together so I can write everything down. I just don't know if I'm ready for this horrible stuff again. Ron is though, and if he can do it again, I can too. The Oncologist did say that from this point on there would be no more surgery, and Ron agreed that he did not want anymore. Treatment now will be only chemo and radiation. Ron is ready to go! He has healed so quickly from the surgery. He is now walking without a cane (okay, limping really). His leg looks fantastic. The only trouble he has occasionally now is that the free flap sometimes swells more than others and it becomes uncomfortably tight around his right ear. He says it feels like an ear-ache, but he knows it's not. He is in good spirits though, as always. He's an amazing guy!