Tuesday, June 12, 2007
A Long Week Has Passed
The home care nurse comes every morning and changes the dressings on Joel's wound. Can't remember what I posted about it before but Joel's incision got infected in the hospital so they had to open it up and let it heal from the inside out. The nurse does the morning dressing and I have been doing the evening but they just told us today that we need to step it up and do it 3 times a day so I will have to come home straight from work and do it then do it right before bed too. The wound looks so much better tonight. He goes in about every 3 days and they debraide it. (scrape away the dead tissue) Really gives it a jump-start on healing. Oh and Joel had the sutures in his rear taken out today. Doc said they healed really fast and all looks good on that wound.
It seems like Joel has 2-3 Dr appts a week. He can only ride in his truck comfortably because of not being able to sit on his butt and its our only car now since I turned in my lease on Monday. Makes it hard to work and get Joel to his appts but my parents have offered to switch cars on those days and take Joel in his truck if needed. Not having the lease payment and insurance will make things a lot easier though so I can't complain.
Joel got out and took a couple of walks around the neighborhood the last couple of days which was nice. He can't stay out long but its nice to see him getting about. Ty has been so good through all of this and really takes care of Daddy. He is so careful at home to not hurt Daddy's boo boo and even asks Dad if he is ok on our walks. So cute.
Just wanted to say thanks to all our neighbors that are helping us in little ways. We really appreciate all the help. The dinners you have been providing are awesome and the timing is perfect and mowing our grass last weekend helped tremendously. We love living in a neighborhood and though its not under the best circumstances we are enjoying getting to know some of our neighbors better.
Tuesday, June 5, 2007
Wooo Hoooo Joel pooped
We finally walked out of the hosptial room around 5, walked to the car and got home around 6. Our neighbors organized a dinner for our family for the whole month of June so we didnt have t make dinner and ate Ravioli and salad...yummy!! After dinner we celebrated Ty's birthday. I ordered a Mickey Mouse cake from The Back Home Bakery and it was awesome. Ty opened his gifts and he had to try out the bike and the big wheel to make sure they worked out. Joel was in bed early and I am going to bed now.
Monday, June 4, 2007
He's still there
Sunday, June 3, 2007
Flapjack Fundraiser
There were plenty of people who helped but without Jamie, Katie, and Nicole, this fundraiser would have never happened.
A couple auction & raffle photos
A couple more of our friends and family
Friday, June 1, 2007
A week has come and gone
Thursday, May 31, 2007
Days 5 & 6
Tuesday, May 29, 2007
Post Op Day 3 & 4
Day 4 had a rough start. I didn't get in bed till almost 2 am and had the alarm set for 5:30am. I hit snooze till 6 and finally got up and got into the shower then headed out the door to my moms house where Gage and Ty have been staying. I nursed Gage and headed out the door with Ty and dropped him at school on my way back to the hospital. Joel had a really rough day yesterday so I called into work today. I know it sounds weird but I get so much more rest when I sleep in the chair bed at the hospital. Joel had a really slow start this morning. He started coughing this morning and I started coughing this afternoon so it sounds like we are both getting sick. Coughing is causing Joel tremendous amounts of pain so I hope they can get him something to keep it under control. Joel got his own room again so looks like I will be staying with him tonight. I know that relaxed him a little. He has had wonderful care for the most part but last night be had a nurse that wasn't so good and he was in pain most of the night so he got no rest. I am glad I will be here tonight to help out if needed.
The Dr came in this afternoon and removed a couple staples in 2 different places along the incision line that runs up Joel's belly. The wound was a little red and seemed to be infected. She packed the open area with gauze and hopefully this will help it heal. Joel has been in pain most of the day since the staples were removed and all the coughing. He was also moved off his bed to go get a chest x-ray and also check his legs for clots. It's been a busy day and 1pm rolled around and he still hadn't gotten out of bed. I had a little chat with him and he finally got up and stayed up for over 10 minutes. No walking yet but it gave the aid a chance to change his linens and I washed him up and changed his gown. He always looks better after he gets up and I am sure he feels better with fresh bedding. I had a chat with the nurse because Joel was eating and she got him to eat 4-5 bites of lunch and 4-5 bites of dinner. It's a start. He's sleeping now so I got a couple minutes on the computer but I am going to go get some rest now.
Monday, May 28, 2007
Surgery #2
The 2nd surgery went well and Joel was back in his room about 3 hours later. The ICU is a great place, the nurses on the regular floors just don't have enough time to spend with each patient. Bare minimum usually is all they have time for. It's not their fault, they are just assigned too many patients. In the ICU, Joel has had around the clock care and he is looking so much better. He hasnt gotten up since about 9 this morning due to the busy day, I am hoping he agrees to get up at least for a couple minutes tonight. I meant to go home tonight to take a shower and come back but I fell asleep in the chair around 9 and just woke up. Maybe I'll head home in the morning for a few minutes after the Dr's make their rounds about 5 am.
Saturday, May 26, 2007
Thank you
The next day
Joel's Surgery
Joel was in and out for the rest of the night and I stayed with him till about 1:30 am but then I had to leave since he had a roommate. I requested him to be wait listed for a private room so I could stay with him. We'll see how that goes. All was going well went I left and Joel was trying to rest though he really wasn't sleeping.
Friday, May 25, 2007
Long Day Already
Thursday, May 24, 2007
Jello, Popsicles, Broth
Wednesday, May 23, 2007
A Clear Head to Move Ahead
We arrived in New York at LaGuardia airport. It was a quick flight and Gage was awesome. We took a shuttle to the hotel where I pumped, we changed clothes and we headed out to meet friends. Though the trip was totally last minute, we had friends come from all directions to see us and have dinner on Sunday night. Allison and Mac came from near Boston, Susie came from Jersey, Steph from Pennsylvania, and Tammy & Ken from Connecticut. Tammy was the only one that had met Gage before so everyone else got to meet him for the first time and we walked around Times Square and hit a street fair. We had dinner at a family style Italian Restaurant called Carmine's and it was very good. It was a short visit since everyone had to head home after dinner so they could get in bed for work on Monday but it was really nice to connect even just for dinner. Gage is such a trooper. He only napped for about 45 minutes in his stroller and stayed up till after 10 since it took 2 hours to get his crib brought to the room.
We had a late night and an early morning but Joel I were out of the room and walking to the Sloan clinic at approx 9:30am and it didn't take us long to walk, it was about 15 blocks and it was a beautiful day. We passed the Radio City Music Hall and a beautiful church. Lots of graduations going on here this weekend.
Our appt was at 11:30 and we finally got to see the Dr the 1st time after 2 pm but it was worth the wait. The Dr was very nice and was very thorough with her exams and explaining everything in detail so that we would understand. There are quite a few risks associated with this alternative surgery. Those risks that would be the same as the permanent colostomy and a few more. Pretty much she explained to us that this shouldn't be viewed as a better approach to permanent colostomy because at this time there are unfavorable things that come along with the surgery and this surgery is only chosen when someone will absolutely not want a permanent bag. It is sad but there are some people that would rather die from cancer than have a bag so this approach is to help those patients that are willing to die. While there have been thousands of artificial sphincters for people that have rectal incontinence and the artificial sphincter works great, the surgery is altered a little for rectal patients since the anus is completely removed therefore it doesn't work as good. There have been 4 previous rectal cancer surgery's in this study and all have mixed emotions regarding their choice. We got the phone number to call a previous surgery recipient and plan to call her today. This study would prolong Joel's healing time on top of all the risks. Best case scenario, Joel would miss another year of work after this one and he would have 8 additional months of heal time and that's if all goes well. He could very well end up having another major surgery sometime down the road or even 2 surgery's if anything should fail, etc. A lot of unknowns.
Before we even left the office, Joel had had made up his mind. ~~He wishes to accept what is true and best for his family and for himself and move on and enjoy life and resume his fight against the cancer. He is scheduled for the permanent colostomy surgery here in Michigan on Friday with a great surgeon. We are so glad that we were able to weigh the options prior to his surgery and leave behind any what-ifs or regrets. Sloan-Kettering is a wonderful hospital and they are ranked #1 for Cancer for a reason. If anyone ever has to deal with cancer in their lifetime, it is our opinion, that searching out a top-rated hospital can make all the difference in the world. Whether it be #1 in the USA like Sloan or #18 like U of M. Both are great and top ranked hospitals.
We flew home last night after spending a couple hours walking around Manhattan. We strolled 5th avenue, canal street, and Central Park. It was a beautiful day and we were able to spend a little time soaking in what a great family we have and what great friends we have. We feel very lucky and the trip itself was an opportunity to spend some time with Gage since second children kind of get the shaft in that department. We missed Ty horribly while we were gone and everywhere we went, you could hear us saying, "Ty would love that or wish Ty could see that". We will have to take the kids back when they are a little bit older. New York is an interesting place with new things on every corner.
Our flight home was good. We got in really late and Gage was great and fell asleep in the stroller in baggage claim. Joel started a clear liquid diet at midnight last night. I can't imagine not eating for a couple of days but Joel is in the zone. He will do fine.
Thursday, May 17, 2007
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.
Monday, May 14, 2007
The waiting game
Sunday, May 13, 2007
New Option Maybe?
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
Saturday, May 12, 2007
Pre-op Appt
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.
Monday, May 7, 2007
Feeling a little better
Thursday, May 3, 2007
5 Year Anniversary
Friday, April 20, 2007
Done with Pre-Op Treatment
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.
Monday, April 9, 2007
Treatment Plan
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.
Sunday, April 8, 2007
Choosing a Doctor
Saturday, April 7, 2007
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
Saturday, March 31, 2007
The call you never want to get
I want to start by saying thanks for stopping by. I have never “blogged” prior to today so I am hoping to get better as time goes on. Next I will bring you up-to-speed on what has happened so far with Joel’s treatment and his diagnosis.
In August 2006, Joel started having pain in his abdomen, rectal bleeding, and frequent bowel movements. After 4 days without sleep, he visited his primary care physician. The doctor did not perform an exam but sent him to have a blood test to rule out anemia. The pain subsided and the anemia test was negative, but the other symptoms persisted. In January of 2007, Joel started having tail bone pain. He visited another physician in the PCP office whose diagnosis was internal hemorrhoids and she started him on anti-inflammatory medication and a very light pain medication. A referral was written and a colonoscopy was scheduled for late February. After 2 days of more severe pain, Joel returned to the PCP and asked for stronger pain meds, and at this time, the PCP called and requested that the date of the colonoscopy be moved up. Joel had his colonoscopy on