Days 5 & 6

Joel is getting better day by day but progress is still slow. He was able to get up and take a few steps down the hall on Tuesday night. Pain is still an issue. Nothing seems to work and Joel is getting real tired of being in pain. The epidural worked for a couple days but it stopped working and they switched to a morphine drip which didn't work that well. They took the catheter out and all the IV's so now Joel is on oral meds and they didn't help at first either and Joel had to get something stronger. Just doesn't make sense that someone should have to be in such pain for days before getting the right script but it then again I think the meds work as long as he doesn't move. So if he could just be a statue life would be swell. I decided Wednesday night was my last night at the hospital because Joel was over a hump and I needed to get back to work and the kids needed to be at "my home" as Ty says.

Post Op Day 3 & 4

Sorry I didn't get on to update yesterday but I got out of the hospital for a little while and spent some time with the kids and Joel got moved back to the regular floor. Yesterday the Dr's thought Joel might have fluid on his lungs but I have yet to get a confirmation on that. His incision was a little red and looking like it might have an infection but they were just going to keep an eye on it. I couldn't stay last night since he was in a double room. One of the Dr's came around later in the afternoon yesterday and told Joel he had to get up 2 times and he wanted him walking. Joel did very well. The first time was rough and he needed assistance standing but around 10pm he got up again and took 2 baby steps. Dr was there watching so the pressure was on. I stayed till almost midnight and Joel was sad when I left for home.



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.

Surgery #2

I was waiting to post today in hopes that we would have good news. Joel's fluid output had not been good for the last day. He pretty much was not going to the bathroom. We were lucky enough to be moved to a private room so that I could stay with him late Saturday night but first thing Sunday morning the Dr team started running tests since Joel had very little output and before noon he was moved to the ICU unit so that they could give him more specialized care. After a long array of different tests they decided around 3 to take him in for another surgery. They were pretty sure that fluid was bot leaking into his abdomen thru a hole of some sort so they decided to go in and insert a couple of stints between his kidney and bladder. I hated to see Joel go into surgery again but I was hoping this would make him better because he was not looking good.

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.

Thank you

To all our friends and family for constantly keeping us in their thoughts and prayers. We are so lucky to be surrounded by such amazing people.

The next day

I came back to the hospital this morning and Joel had developed a fever since I left last night. They started him on Tylenol to try and bring it down but its continued throughout the day and is actually increasing slowly. They say that Joel getting up and walking more will also help. It is really important Joel gets up and moving and he did get up tonight. If he doesn't get up and walk around a couple of times a day there is more risk for infection, pneumonia, and blood clots. Not something you want to hear but the Dr said that the first 3-4 days after the surgery are actually more critical than the surgery itself. Joel was fighting getting up and I shared with him exactly what the Dr told me and he hasn't complained since then. Joel says that once he's up that he's fine but the getting up is the hard part. He won't be able to sit on his bottom or lay on his back for a couple of months...ugh so hard already. Joel has to lay on his side with pillows propping him up and flip every2 hours. He hates this but it has to be done. I give such credit to all the nurses here at U of M. They are AWESOME!!! They make all you are going thru is so much easier. We have been lucky so far and have had a few really good ones. Joel's roommate was discharged tonight and so I am able to stay in his room. I have one of those fold-out chairs that Dad's sleep on in labor & delivery. Not like home, but at least I will rest a little tonight.

Joel's Surgery

Joel was out of surgery at approx 7:30, I just can't keep all the times straight. I guess the 6 hours must have included recovery time. We talked to the surgeon and she said the surgery went very well. There was considerable shrinkage of the tumor from the radiation with only an average amount of scar tissue. I think I remember her saying the tumor was almost 4 inches long at one of the appointments and she said when she removed it that it was about the size of a golf ball which means probably about half. She also said that after inspecting all the surrounding organs that she saw no metastasis (spread). The cancer was in his lymph nodes though so he will still be having about 4-6 more months of chemo to make sure there's no stray cancer cells floating around in his blood stream. Joel was taken up to his room and he settled in at approx 9:30.

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.

Long Day Already

Its approx 5pm and Joel was taken back for surgery at approx 3:15. I thought the surgery was at 4 but it was actually supposed to be at 2pm but they always run late or so the nurse said. Joel's surgery is supposed to take approx 6 hours but it could be midnight before he's out of recovery and I get to see him. Christine, Joel's mom and her boyfriend Mike and I just had lunch/dinner in the cafeteria. Now we wait.

Jello, Popsicles, Broth

Sounds like the next quick loss diet craze but Joel is "so over" the clear liquids diet. His last bit of solid food was Tuesday at midnight and the nurse just called and told us his surgery will be 2pm on Friday. Joel feels like he is being tortured. I try and eat when he is not around and have been laying low with cooking so the smells don't tempt him. He's been doing very well though. He is spending the day tidying up some things and he is meeting his buddy Jim at the Plymouth Coffee Bean http://www.plymouthcoffeebean.com/.

A Clear Head to Move Ahead

It's been a couple days and a lot has happened. We got our approval from M-Care last Friday to be seen by Dr. Wong at Sloan-Kettering in Manhattan New York. We booked a one way ticket for Sunday afternoon since Joel needed to be seen Monday morning and he needed to have prep time for the appt.




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.

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.