We still live life

Though life is very, very hard right now, for the most part, we try and still do everything as we did. Normalcy is good and healthy for us and for the kids. We still take Ty and Gage to do fun things, we still laugh and watch t.v., we still have fun family get-togethers, and cancer isn't the main topic everyday though it has been for the last 2 days. We still love to hear positive things going on in friends and families lives. Sometimes people think that because you have cancer that everything changes, and it does to a certain extent but Joel is a trooper and has taken everything that has been dealt to him without complaint. He is such a strong person.

The waiting game

The last couple of days seem to be a blur. We woke early on Monday morning and Joel and I spent the whole day on the phone. We started by calling Sloan-Kettering in New York to see if we could get an appointment. Then to the Canton Health Center to get a referral since it will be out-of-network, then to U of M to get all the paperwork, test results, slides, reports, etc that we would need to be considered in the study. It was a long day but it feels like we are heading in the right direction. Now its the waiting game. Waiting to see if we can get a consult and waiting to see if that consult is approved with the referral thru M-Care.

New Option Maybe?

When Joel was first diagnosed we spent days on the computer researching Rectal Cancer and the best doctors, treatments, and hospitals. Our first choice was a Dr Wong at Sloan-Kettering but when we called and tried to set up a consult, he was not taking patients at that time. So we turned to Mayo and our insurance turned us down and we decided to stay at U of M with Dr Huang a great surgeon but she wasn't our 1st choice.

I couldn't sleep last weekend and Joel and I had joined a couple chat boards after he was diagnosed so I was cruising through some posts and came across a new study being conducted by that 1st Dr Wong at Sloan-Kettering. It's very late in the game since Joel's surgery is scheduled for less than 2 weeks from now but who knows, maybe Joel will qualify. I couldn't wait to tell him when he got home.

Camping

Joel got to go camping last weekend with his friend Rob. Not far away and only for one night to go sleep under the stars, have a campfire and do a little fishing. Camping is one of our favorite things to do and this was Joel's one opportunity to go this year so he was pretty excited. He had a good time, all the fish seem to be spawning so they didn't catch a whole bunch but it was a nice relaxing weekend for him.

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.