Pre-op Appt

As much as one person could want to know whats going on, Joel HATES getting an exam because they hurt. The tumor is very low and takes up about 3/4 of the rectum leaving hardly any room to maneuver. But it was a necessity so that the surgeon can know how to prepare for Joel's surgery. After the exam, Dr Huang explained to us that there was some shrinkage from the radiation and that the tumor was approx 1cm from the muscle, unfortunately she needed 2 cm to be able to save Joel's Anus.

Pre-chemo and radiation there were 2 surgery scenarios that were explained to us. 1 being that the tumor would shrink and they would be able to give Joel a temporary bag while his rectum and anus healed and everything would be reconnected at a later date or that the tumor would not shrink enough and he would end up with a permanent colostomy bag. The latter being 90% and the temporary bag being only a 10% chance. Well, the tumor did shrink but not nearly enough to get Joel where he needed to be. So after the exam we were told that she was scheduling Joel's surgery and he was sent to see a stoma nurse who explained to Joel and showed him pictures of what the stoma will look like. The nurse marked a spot just left of Joel's belly button that was right in the middle of his six pack where the stoma will be. She explained to Joel that it could takes months to get used to and get the hang of his body again but eventually he will fall into a routine and no one will even be able to tell that it is there. Either way, Joel knew he was going to have a stoma and a bag but we were just hoping that he would eventually be able to have it reversed once the 1st surgery healed but that wasn't the case. I feel Joel knew all along but it doesn't hurt to have hope.

Feeling a little better

It's been a couple of weeks now and Joel is starting to feel better every day. He is pretty excited to get one good month of feeling somewhat normal before surgery. He has been getting around pretty good and he had his CAT scan last week. We just got the results and it looks like there was shrinkage on the lymph nodes which was good news. The CAT scan can't really detect shrinkage on the tumor accurately so we have an appt at the end of the week to meet with the surgeon where she will observe the tumor and give us an update on shrinkage and which surgery she will do and whether she will be able to save Joel from having a permanent colostomy bag for the rest of his life.

5 Year Anniversary

May 3rd makes 5 years that we have been married though we have been together for 12 years this coming Memorial Day. Man time slips away.

Done with Pre-Op Treatment

Joel has just completed 6 weeks of radiation & chemo therapy. The treatment started out slow and wasn't so bad the first week but since all this treatment is cumulative, the longer you are treated, the worse you start to feel. Joel took the treatment pretty well, he was VERY tired and had a very sore bum bum. The radiation starts to burn your skin after a while, nothing really helps to soothe it, not even aloe. His whole lower abdomen area was red, not red like sunburn but a different red that I can't really explain, it looked deeper than just on the skin and you could really tell the difference. The last 3 days of radiation were stronger and more localized and it really kicked him hard. It burned to pee, hurt to walk from pain, and Joel felt sick and stayed in bed sleeping for the next week. This was by far the worst week but he was done, that was the good thing.

The IV infusions caused some side effects, not because of the method of delivery but because of the drugs being administered. Oxaliplatin is platinum based and affects the nerves causing tingling and numbness in the hands and feet and sensitivity to cold. This is a very difficult to live with especially during the winter time and it also prevents you from drinking anything colder than room temperature, sometimes that's even too cold. Joel explained it like drinking a tall glass of broken glass...not fun and he avoided cold stuff pretty much completely. Also, no getting into the fridge or freezer without gloves because it would cause excruciating pain. The numbness and tingling would start to go away between treatments but would last longer each time. If you saw Joel during this time you probably saw him wearing 2 or 3 shirts and a winter hat even when inside. There was also frequent bathroom trips, sometimes 10-20 times a day, burning, and nausea, just to name a few. Chemo is some scary stuff. There are a couple different kinds but all are given to attack the cancer cells but in the meantime also attack normal cells.

And last, he took the Xeloda pills (sounds like Za-low-da) and those caused nausea, and Joel's hands and feet started to peel.

Treatment Plan

From what we have researched, Joel is getting the most up-to-date treatment. I guess it can vary from hospital to hospital and doctor to doctor as far as dosage goes but we are confident that Joel is getting the best proven treatment so he can lick this thing. Joel just finished up his first round of chemotherapy and radiation therapy which consisted of taking 2 different forms of chemo and receiving radiation at the hospital 5 days a week.For those of you who don't know I will do my best to give you a quick rundown of what this all is. Until Joel was diagnosed we were cancer ignorant so this has been an eye-opening experience for us.

First the radiation is very precise and the radiation oncologist takes a lot of measurements pre-treatment and those measurements and dosage of the rays are programmed into the machine before Joel's appt every day. Great care is taken to avoid other major organs and any area that doesn't need to be radiated but they must radiate more than just the tumor area to make sure they get it all. Radiation therapy is serious stuff and is used to try and shrink the tumor as well as the lymph nodes. With this you have a one and only shot at getting the cancer, Joel received the maximum number of treatments he can receive and the radiation actually continues to help shrink the tumor and lymph nodes for up to 3 months after stopping the treatments.

One form of chemo that Joel took came in a pill called "Xeloda" and Joel took 5 pills every day for 6 weeks. The second form of chemotherapy is called "Oxaliplatin" and Joel received 3 infusions (through an IV) over the 6 weeks. From what we have read these are the 2 best drugs to fight off Joel's cancer and the oxaliplatin actually helps sensitize the tumor and aid the radiation in helping shrink it.

Joel is so glad to done with treatment.

Choosing a Doctor

Well, thank goodness that we are already affiliated with a good hospital. When it comes to something like cancer or any other serious ailment, this is not the time to be second guessing what hospital your insurance is affiliated with. We have M-Care and get to choose which hospital we want to be seen at and U of M is ranked 11th in the country for Colorectal Cancer and 18th in the country for all cancers. We did petition M-Care for a 2nd opinion at the Mayo Clinic in Rochester Minnesota since they are ranked #1 but we were denied due to the fact that U of M and other hospitals in our network were able to supply the same care and same procedures as the Mayo Clinic. We have liked Joel's Dr's thus far and have confidence in them so we decided that being treated at the University of Michigan and being close to family and knowing we already have nationally ranked care is great. Dr Huang who is Joel's surgeon has actually performed surgeries on a couple people we know and comes with great accolades which makes the decision even easier.

Stage III Cancer?

What does it mean? You know until Joel was diagnosed, and even then, we had no clue either. After we got "the call", we immediately headed for the internet to see what we could find out. But it wasn't until we got the diagnosis the next week that we could really look at what Joel was up against.

There are 5 stages of cancer. Stage 0-Stage 4. In Joel's case, Stage III means that the cancer has not spread past the rectal/colon wall but there was evidence that the cancer had spread to 3 surrounding lymph nodes.

While there is a lot of information out there, one of the best pictures we found that allowed us to understand this cancer is on a .gov website. Here is the picture and a link