Pin Cushion

Tomorrow is my last LOVENOX® injection! I have had one a day since coming home from the hospital. According to their web site, "LOVENOX® helps reduce the risk of developing deep vein thrombosis, also known as DVT blood clots. LOVENOX® alters the blood's normal clotting process, so clots can't form as easily, and neither can a potentially fatal pulmonary embolism." In short, I get one shot a day to keep any possible blood clot caused by the surgery from getting into my lungs or heart and killing me. I think it's a fair trade. If the cancer or the chemo or the radiation or the surgery doesn't kill you, why let an incident blood clot take you down?

For the first three days Carla administered my shots. A nurse at the hospital coached her through the first one on our last morning before coming home. On day three I flinched when she stuck me, leaving the syringe dangling from my abdomen. Carla did recover and finish the injection, but that was it. She really doesn't like hurting me, and I had no desire to hurt myself, not even for curiosity's sake. Fortunately, we have a neighbor who is a nurse practitioner. Kim volunteered to come over each morning and give me my shots. She said she loved me and all, but she had no problem sticking me with a needle. Some friend. She's been sticking me ever since. Thanks, Kim. We love you, too!

The experience for me has been mixed. Some days I still flinch and some days I don't feel the poke at all. Most of the time the injection stings for a few minutes and occasionally it doesn't. In any case, I'm ready to be done. After 20 of 21 injections I feel like a pin cushion.

Memories from Christmases Past

Two of my cancer blogging friends have been posting memories from Christmases past. I figured I'd join in the fun. So Carole and Fiona, these are for you.

My father scanned these early photos for one of his projects. Here I am in my father's arms.

Christmas, 1963 (18 months old)

That's me on the train. And like your doll house, Carole, I actually remember this toy.

Christmas, 1964 (2 years old)

My little sister joined us the next year. We all made the paper chain hanging on the tree. I'm the one without the doll.

Christmas, 1965 (3 years old)

Somewhere along the line my parents started sending annual Christmas cards with family photos on them. This lasted for several years. Our neighbor would come over and take the picture.

Christmas, 1970 (8 years old)

Fiona, you posted a picture of your home almost buried in snow. I spent 13 years in this house and it only snowed twice. The first year it snowed we got sent home early from school so we could play in the snow before it melted. By that night it was gone. This is a picture of the second year it snowed. It took two days to melt. If we wanted to play in the snow we had to drive into the mountains two hours away.

Winter, 1972/1973

This is our annual Christmas card photo for 1973. We are standing in front of the same brick fire place as in the 1970 card. My father built this fireplace when he added the family room on to the back of our house.

Christmas, 1973 (11 years old)

I don't have any more digital pictures available until Christmas 2008. My wife and I took our children to Bryce Canyon in southern Utah that year where we bought our first digital camera. We spent three days there and had an absolute blast.

My girls—Rachel, Abby and Carla

Hiking on the trail down among the hoodoos (tall stone structures)

Nathan, Michael and Rachel having fun in the restaurant at Ruby's Inn

Michael, Rachel, Abby and Nathan relaxing after a full day outside.

Mr. and Mrs. Claus handing out candy canes

Abigail with Carla, Nathan, Andrew and Rachel behind her

I think my fondest memory from Christmases past is our stockings. My mom knit a matching set of Christmas stockings for the family back when I was still in grade school. Our name was knit across the top. As we married and moved out of the house she would knit one for our spouse and then for each new grandchild. Now Carla and our children enjoy the same memories. These are our family stockings just after Santa's visit last night. The darker green one on the far left is my original stocking from the 1960's. My mom has repaired a few moth holes over the years, but it is still holding up.

Christmas Eve, 2010

I had my daughter, Rachel, take this picture in front of our family Christmas tree to wrap up this post. I thought you'd like to put faces to names. Thanks, Carole and Fiona, for all the cyber support. Carla and I have enjoyed getting to know you. From our family to yours, we wish you a Merry Christmas and a Healthy New Year!

Steve and Carla—Christmas, 2010

"God bless us, everyone!" ~Tiny Tim

I have friends!

Most of you know I took a six week leave of absence from work to deal with surgery and recovery. Carla drove me in to the office last Friday afternoon to visit with my coworkers during their Christmas party. It was great seeing everybody after being gone for two weeks. What was my delight yesterday, then, when a cool Christmas floral arrangement was delivered to our home from my "friends at Applied Signal Technology". I have friends!

Thank you, friends at AST

I've been touched, actually, by the many, many people who have come out in support of me and my family during this cancer adventure. Childhood friends have reached me on Facebook. Family, friends, and even friends of family and friends have sent cards and well wishes. Neighbors have brought meals more times than I can count. I even have new cyber friends from cancer blogs.

Thank you, friends and family

In a world full of horrific headlines, it's humbling and heart warming to harvest the humane side of humanity. Truly, I have friends.

“A true friend is someone who thinks that you are a good egg even though he knows that you are slightly cracked” ~Bernard Meltzer

NEWS FLASH: Cancer Kills Energizer Bunny

Cancer patient Steve Chamberlin of Stansbury Park, Utah, reports that rectal cancer has killed the Energizer Bunny. "Before my cancer diagnosis I used to just keep going, and going, and going," he quips, "but now, all I seem to do is just go to sleep—anywhere, anytime. Except at night, of course. Then I only attempt to go to sleep, even though I'm completely exhausted." Steve believes that Dr. Sklow accidentally removed his batteries along with his rectum during surgery on December 3, 2010. Admittedly, Steve's batteries were first depleted prior to surgery by six intense weeks of chemo and radiation therapy. But with two months off for recharging in anticipation of the surgery, all evidence pointed towards an increase in energy levels. Now, nothing. The Energizer Bunny is all but dead. Steve is currently in communication with Duracell, the CopperTop® people. More news to follow shortly.

Home, Sweet Home!

We made it. We are here. I am in my own living room as I write this! We actually got home about four hours ago. After unloading the car and unpacking my pain meds (OK, so I watched Carla and her mother do this), I promptly swallowed two more pills and went down for a nap—in my own clothes, in my own bed, in my own house! Does it show that I'm glad to be home?

Carla is overjoyed to be back on her home turf. She helped her mom a bit on arrival and then crawled into bed next to me for a nap of her own. That was nice. I have watched her sleep on a sofa bed across my room for a week. And the best part of our bit of sleep? No noise. Nothing remotely reminding of a busy hospital. Carla's mom, Joy, woke me at six for my next round of pills. So now we are back up and visiting with our children, catching up on their weeks adventures.

It's dark outside. If you should pass by our house the Christmas lights are on, adding our bit of cheer to the neighborhood. Inside is a happy family glad to have Mom and Dad home again.

There's No Place Like Home

Today is the big day. We have been cleared by Dr. Sklow to go home. He said last night, with complete satisfaction, that I looked too good to be in a hospital. Funny guy. What I am realizing this morning is that I want to go home now. We have accomplished everything this week we came here to do. It's time to move on.

There is more that can be shared about our stay here, especially the last two days. I know our posts tapered off sharply on Tuesday afternoon. I'll get to that as I recover from the comforts of my own home. For now I just feel tired, reflective, peaceful, and relieved. Mostly I feel immense gratitude for an amazing week filled with amazing success and amazing people—my sweet wife, Carla, being the first among them.

Five steps forward, two steps back

Sorry everyone about not having an entry for Tuesday, but it ended up being a very crazy day.

Steve has been doing so well that they decided to take out his epidural and IV pain medications yesterday and switch him over to oral medications. It was really nice for him to lose his shadow and be able to walk around without any lines or drips being attached to him. Then the pain kicked in.

Looking back, we can see how everything could have been handled a bit better and might have saved Steve several hours of intense pain.

Pathology Results!

Great News!!!!

Steve's surgeon stopped by this evening to visit with Steve and do a post surgery follow up. When he came in he was also able to give us the results of the pathology that was done on Steve's rectum and the surrounding fat and lymph nodes that were removed.

Steve's tumor went down from a T3 to a T1 tumor and there were zero lymph nodes with cancer out of 18 that were removed. This is the best results that we could have hoped for. We are thrilled!

Steve will still have some follow up chemo just to make sure nothing is hanging around out there that they aren't aware of, but the chemo and radiation he had prior to surgery did everything they wanted it to do and did it extremely well.

Thank you, thank you, thank you everyone for all your fasting, faith, and prayers in behalf of Steve and our family. All of yours and our prayers have been answered. Don't forget to thank Heaven, too.

Grand Central Station

Whew... what a morning. It felt a bit like rush hour traffic and we were Grand Central Station . I guess Monday is when things kick back into gear after a nice quiet weekend. From first thing in the morning until about 12:30 pm Steve had a pretty much constant stream of visitors. The surgical team was the first to show up and they said he had done well enough yesterday that he could try some foods of his choice today. There followed after them, not necessarily in the order listed a:

dietician - she left Steve with a menu that looks like something you usually see at a restaurant. He calls in his order when he is ready to eat and about 15 minutes later it gets delivered to his room.

ostomy nurse - she came in to go over what you do for an ostomy and ended up talking Steve through the process of switching his out. The one he had was starting to pull away from his skin and you don't want that stuff to leak out. He was able to do most of it himself with only a very little bit of help from the nurse. She just checked the seals on it to make sure it was nice and tight when he was done.

pain team - they are leaving the epidural in for at least one more day while they see how his body handles real food and not just the soft stuff. If all goes well today with his food, they will remove the epidural tomorrow and then he will switch over to pills that you swallow for his pain control. Apparently that can be a bit of a rougher transition which is why they are waiting until after they get him back on solid food before they remove it.

social worker - she stopped by to see how Steve was handling being in the hospital and all the changes to his body from the surgery. She also wanted to know what kind of a support group he has and whether he needed anything beyond that. She let him know about some of the resources that are available to him if he feels he needs or wants them.

regular nurses - they have their routines they follow to track how he is doing. They also came back in and gave him a wash cloth bath while I ran to get some breakfast in me. (It was after 10:30 and I hadn't had a chance to eat.)

surgical teams tracking nurse - she tracks how Steve is doing through all his treatment and recovery. She was amazed that he was as far along as he was in his recovery. I guess if anything were to change she is the one who would let the appropriate people know.

visitors - My brother and his wife Carol stopped by to say hello and visit for a few minutes. It was a fun treat to see both of them. Two of Steve's friends also stopped in during their lunch hour. They left him a little sign to hang on the wall that says "If I Were Humble, I'd be Perfect". Steve got a good chuckle from that.

phone calls - My mother called about a few things at home and Steve's sister Lauri called just as Steve was heading down the hall for one of his walks. I stayed in the room and visited on the phone with her for a few minutes while he got his exercise in. We have to spread his walks through out the day and he hadn't had a moment to fit one in the whole morning.

After everyone had left, Steve ordered a lunch of macaroni and cheese, some grilled eggplant, zucchini and yellow squash with marinara and cheese, and a chocolate milk shake. He was able to eat almost all of it except the vegies. (Which he ate a little bit of and then had to stop.) They sent just the vegetables in on a dinner size plate and they could have been a meal by themselves. Now that things have slowed down, Steve is trying to take a bit of a nap so that he can get through the second half of the day.

Monday, Monday, So Good to Me

But first let's finish Sunday. Carla's mom brought all five children over in the early afternoon. Actually, Nathan said he drove them in, so that was nice of Grandma. It has been a great help with Nathan getting his license about the time I was diagnosed. Our three sons hadn't seen me yet. While my girls came in and got their hugs, the boys were staring at all of the tubes in me. I have an IV pole with two or three drips on it plus a black box hanging off of it with my epidural drip. Then there is the PCA morphine pump for pain control and an extra oxygen tank on the base of the pole for when I take my walks. So a tube to my back and a tube in my nose. I also still have my catheter in and a JP drain in my abdomen each with their own tubes sticking out of my gown. Overall it's pretty intimidating at first.

(Transition to Carla) Steve feels well enough to do his own blog at times, but with all the IV drips in him it makes typing rather difficult, so he has asked me to finish this entry.

The kids had a pretty fun visit. One of our close friends had sent a fun bag of Steve's favorite foods to the hospital on Saturday. Two of his favorite foods are graham crackers and marshmallows. With that list of ideas she threw in some hershey chocolate bars as well. After showing the kids his ostomy and staples, he went for a walk around the 5th floor. All of them together made quite a parade going down the hallway. When they reached the family kitchen we went in and the kids made some microwave smores while Steve sat in a chair and watched. They were just about finished when one of his devices started beeping. Steve left to walk back to his room with half the kids, while I stayed to clean things up in the kitchen. (Steve will be able to have his smores today. He has been switched to regular food as of this morning!) After the nurses took care of the bag that was causing the beep, Steve got back into bed so he could rest. That is kind of how things go for him currently. He gets up and is active and then he needs to rest and recover. By the end of the day he was able to do 2 1/2 laps around the fifth floor before it caught up to him. He is making steady progress.

While Steve rested up from his walk, I took the kids on a tour of the rest of the hospital. They have the worlds largest puzzle hanging on one of the walls on the second floor. It has 24,000 pieces in it and was built by Jon Huntsman's grandson. It is a cool puzzle and one our kids could appreciate it since we enjoy building puzzles ourselves. I showed them where Steve had his surgery and radiation treatments. It really is an amazing facility. When we returned back to the room the kids visited quietly for a little longer and then decided they better head home. It was a really foggy day outside and it makes driving a lot harder once it turns dark, because the headlights bounce off the fog.

The rest of the day was pretty straight forward, we didn't start having any surprises until the night shift came on. For some strange reason Steve's catheter leaked a couple of times during the night. We ended up doing 2 laps around the 5th floor at 3 in the morning while they switched his bedding. The nurse said there may have been a kink or a bubble in the line, because the catheter was still in place when we checked it. The great news of the morning is that Steve is now off oxygen, can order his own meal choices from the patient menu, and doesn't need to wear the leg pressure cuffs unless he is flat in bed. Slowly, but surely, he is getting back to a more normal existence.

Welcome, welcome Sabbath morning

Welcome, welcome Sabbath morning...

That is the first line in one of our church's hymns.

Steve made it through the night just great. His ileostomy is functioning perfectly. This means that his body is finally being able to get rid of all the air that was in his abdominal region from the surgery and he no longer feels like a balloon that is ready to pop. Instead his ostomy bag keeps having to be burped, because of the air that is being released. It makes some rather cute and funny sounding gurgling noises when it does it. (I'm not so sure that Steve agrees with my opinion on that point, since it is hard to miss when it happens.) The other piece of good news is that because his ostomy is working correctly he is allowed to start eating some real food. The kitchen sent up what I thought was a rather impressive first breakfast of creamy wheat cereal, two pieces of toast, jello, saltine crackers, herb tea, and apple juice. He managed to get a few bites in before we headed down the hall to church.

Yep, you read right. We got to go to a half hour church service just down at the end of our hall. It is nice that they have a small simple meditation room on our floor of the hospital. They offer a brief Sunday service for the patients and any family members who would like to attend. Steve woke up and decided that he wanted to get cleaned up and try to make it to church. So that is what we did. We gave him his first bath since surgery, using wash clothes, and got him into some fresh hospital clothes. He then walked his way down and set himself up with his shadow (a contraption on wheels that carry's his oxygen tank, drip lines, meds, etc.) at the back of the room. I was able to help out and play the music for the service. We then returned back to our room where he was able to finish eating the breakfast he had started. So far the food seems to be staying down just fine. He has eaten it slowly which probably is helping. He is making great progress, we have a lot to be thankful for.

A Long Day

It is 8:30 pm and Steve is retiring for the night. He has had a very full day considering everything his body went through just yesterday. The first really good news is that we now have a room of our own. It ended up being rather fun, because about 15 minutes after Grandma arrived with our two daughters, they let us know that a room was available. So our daughters were able to see Steve in the room he was in for the first day and then help him move to his nicer private room. Steve's second walk was walking down the hall with his daughters while they helped shift our belongings to the new room. (He had done a shorter one a couple hours earlier.)

After the girls had left, Steve's friend Mark showed up to visit. This gave me a chance to go use the shower and get some dinner in me. Steve got his third walk in during Marks visit. This was his longest walk so far. It finally got things moving so that some of the gas that has been bloating his stomach could release. That has been about the only thing that has really made him uncomfortable so far. Anyway, between all his visitors, sitting up in a chair for most of the day, and his three walks, he is pretty worn out. Hopefully it will help him to have a good nights rest. I'm pretty beat myself. I think I'll join him. Good night everyone.

Sitting, Standing, Walking

Second day...

is off to a much better start. Last night was a little crazy here at the hospital. They didn't have as many patients leave as came in so we ended up in the observation room for the night. Fortunately they allowed me to sleep in a neighboring bed because the chairs in the room are not designed for any kind of sleep. ( I tried!) We ended up going through 5 rounds of different nurses because he wasn't assigned to a room.

First thing this morning we met his nurse, Cara, for the day shift and her aide Fanny. They will be over Steve's care from 7am - 7pm. They have already had him sitting up, standing up, and after a short rest they plan to have him try walking. They made a check list on the white board in the room we are in that they want to have completed by the end of the day. It reads:

Diet ice chips

Linen _

Bath _

Walk _ _ _

Chair _ _ _

Steve says it is nice to be doing something other than lie down. He was surprised at how much work it was to just stand up. With some of the moving around he has been doing, things are starting to shift in his bowels so he is feeling a little bit in that area, but nothing really painful. You have to love epidurals that work right.

From my perspective he is far more alert and has way more energy than he had yesterday. His personality and playfulness are back. I'm glad all that sleep yesterday seems to be paying off.

Noises in the Night

Steve here. I have slept most of the day and well into the night. Bishop Spilker stopped by to visit this afternoon. He works nearby. Then my neighbor Mark came in after work. I felt bad because I kept drifting off to sleep. Still, it was nice for the company. He visited with Carla for several hours.

I never did get my own room. I am the last one left in the holding area. So in a way I do have my own room. Various nurses have been in and out of my room doing all sorts of tasks—checking vitals, emptying my JP drain, clearing my ostomy bag, monitoring my epidural, bringing more ice chips.

The last nurse to come in had to swap out my foot pump. This pump inflates two pressure cuffs wrapped around my calves. They inflate randomly every few seconds to prevent blood clots from forming in my legs. Sometime during the night it started beeping each time it pumped. This constant beeping eventually woke up me and Carla. Now she is back to sleep and I am left wide awake.

I have enjoyed reading through Carla's posts. She's doing a great job keeping everyone up to date. Thank you all for your comments and encouragement. I feel amazingly well under the circumstances. Yay for the epidural! Soon I hope to start sitting up and walking a bit. We'll see how that goes.

zzzzzzzz

I'm finally with Steve. They brought him up to the 5th floor of the hospital just before 3 pm. He opened his eyes long enough to know that I'm here and then went right back to sleep. His nurse Kim has been in to check on him and should be stopping by about every 20 minutes. He also has a nurses aide named Angelina (now Zach) and she checks his vitals every 30 minutes. I think his body is thankful to finally crash. He didn't sleep well this last week with surgery on the horizon. The next 24 hours are his chance to catch up on some much needed sleep.

Steve doesn't have an assigned room yet. We are currently in an observation area until they get a room cleaned up for him. Fridays are a big turn over day here at the hospital. They get a whole new batch of patients coming in, but are sometimes a little behind where they would wish to be in checking other patients out.

The only thing he is allowed to have at the moment are some ice chips to keep his mouth from drying out. Apparently he suffered from some nausea while in the recovery room so they put something in his IV to help with that. One of the side affects is drowsiness. Sleep on dear zzzzz.

Out of surgery!!!!!!

Dr. Sklow just came out and gave me the great news! The surgery went extremely well. All that was left of the original tumor was a small scar! Steve has a temporary ileostomy on the right side. The surgeon had room to include a j-pouch which is a lot trickier to do on men. That should make life a lot easier for Steve when they go and reverse his ostomy in about 6 months. The surgeon said that Steve only lost 1 pint of blood during the whole procedure. He is now in the recovery room and I will hopefully get to see him in about an hour. Steve got everything he was hoping to hear from this surgery at this stage of the game. Yea!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Last Night

Yesterday was a crazy day for Steve. He went in to work in the morning so that he could wrap up a few things since he won't be back until next year. He returned home just in time to start swallowing some pills that make sure you have nothing inside your intestinal tract when you go in for surgery. By evening he had a whole lot of compassion for any baby that is suffering from a raw bottom. I don't think he will mind too much not having to use that particular part of his anatomy for a while.

At seven o'clock our Bishop stopped by with a couple of Steve's friends and gave Steve a priesthood blessing. We then spent the rest of the night with our children. Steve had wrapped a small surprise for each of our kids and we had placed them under the kids Christmas tree in the basement. After they had opened their gifts, Steve showed them an ostomy bag and explained how it works so that they wouldn't be surprised and could understand what is happening with their dad. We have tried to include the kids from the start in anyway we can. We want them to know that it is ok to ask questions and that they play a part in Steve's fight against cancer. After grossing out Nathan, our oldest who doesn't like anything medical, we moved on to Steve's haircut. Steve had wanted to get a haircut before going into surgery, but he couldn't find the time to pull it off. We have had something going on every night this past week. It has been all Steve can do to fit his work hours in and get home in time for the kids activities. Anyway, Steve still wanted that haircut and decided that he would let the kids cut it for him. We set him up on a stool with a sheet under it and the kids went to town with the buzzers. Mission accomplished, Steve won't have to worry at all about his hair until sometime next year. We then went back into the family room and Steve taught us how we could each make a friendship bracelet out of a string like piece of leather and a small rectangular shaped piece of abalone. We ended with a family prayer and our family cheer, Families Are Forever...

Last night was the kids last chance to see Steve before surgery. We had to leave for the hospital at 5:15 am in order to be there by 6. It wasn't going to work for them to say goodbye in the morning, especially since Steve is not a morning person. The kids have been so good through all of this craziness. I am so proud of them. Abigail has been sleeping with a special bear that holds a pink heart for the last few weeks. She wanted it to be full of love when she sent it with Steve to the hospital, since she can't be there all the time like she would like to be. Steve's gift to her was a small pink locks of love bear. The cool thing is the bear's assigned name is Abigail. We are hoping her new friend will help while she is missing her dad. It is even more meaningful to her cause she is currently growing her hair out so she can donate it to locks of love. Rachel managed to sneak in a quick hug just before we left this morning. She had a choir rehearsal early this morning and had to be up early to get to that anyway.

Hey the cell phone just rang with an update on the surgery. Steve is doing great so far. They just removed his rectum and are now moving on to putting him back together. They anticipate being done with the surgery in about 2 hours.

Thanks everyone for all your love, support, and prayers. It means so much to our family during this time. I'm going to go now and get some food in me while I can. The surgeon will come out and tell me how it went when it is all over. I'll update you when I find out more.

Guess where I am?

I'm relaxing in my hospital bed waiting to visit with the surgeon. I've had my vitals taken, my blood drawn, an EKG, and a good visit with the nurse. Carla is here with me, too. I actually had to sign three or four more forms. You'd think I was joining the Navy. Surgery starts in half an hour at 7:30. Oh, and the nurse just came back in and put a warm blanket around my shoulders because they said my body temperature was a bit low. So they are taking good care of me.

Hi again everyone. This is Carla. I guess I'll have to finish this post.
Steve was just taken out so he could get his epidural. I'm excited to know that he has this alternative for helping with his pain control.  It should mean that he won't need to be as heavily medicated which should help with his post surgery recovery. Apparently Huntsman has some of the best pain management teams around. They travel around the country and train medical personnel around the country. We are so fortunate to have such an incredible facility available to us and so close to home.

Steve's surgeon just stepped in to say a quick hello.  He is just waiting on them to finish with Steve's epidural and then he is ready to go.

They came in and took me back to where Steve was before wheeling him into surgery. He has been cracking jokes and keeping them laughing the whole time. Everyone is in good spirits including Steve. They are thinking they will be about 4 1/2 hours in surgery and then at least an hour in recovery. I won't see him until they take him up to his room, but will receive updates along the way. I'll keep you posted as they come up.

heeeeeeeeelp

Hi... this is me Carla. I've been drafted to fill in as editor while Steve takes a nap in the surgery room. We are hoping when he wakes up we'll hear lots of good news.

You'll have to forgive me if I'm a little disjointed. I've been running around this week like a chicken with its head cut off trying to get everything settled at home so that I can spend the next 7 to 10 days in the hospital with Steve. Thank heavens for mothers that you never seem to out grow. Grandma will be holding down the fort with our five kids. I don't know how I'd do this without her. It is currently 10 pm and I'm still trying to pack my things. Maybe I can make some headway now that the kids have finally gone to bed. We will be leaving for the hospital at 5:15 am in the morning to check him in by 6. I'll fill you in on our activities from tonight while Steve is with the surgeon. Here's to a good nights sleep. I'm going to need it.

A few items of business...

before surgery in the morning.

1) My mother-in-law drove out this afternoon to stay the week with our children. Let's pray that all goes well on the home front.

2) My wife has agreed to keep this blog updated as an on-the-spot reporter during my surgery and the immediate aftermath. Let's give Carla a big warm welcome to Steve's Cancer Blog.

3) Leaving a comment on a post spreads good karma. If you scroll down to the bottom of each post the last line reads "Posted by Steve (or Carla) Chamberlin". On the same line is the comments link. Click on this link to post a comment.

After typing your comment in the comment box, choose who is commenting from the drop down list just below the box. If you choose Name from the list then enter your name. Anonymous comments are also accepted. Just choose Anonymous from the drop down list. In either case click on the Post Comment button to finish. You can also choose Anonymous and then type your name at the bottom of your comment so we know who you are.

4) We check into Huntsman Cancer Hospital tomorrow morning at 6 o'clock. Surgery starts at 8 o'clock. The surgeon expects a 3 1/2 hour procedure under normal circumstances. I should be out and ready for lunch by noon. Oh, wait. Lunch is now several days away. I've been on a clear liquid diet all day today. Tomorrow I'll switch to IV drip lines and ice chips. I can hardly wait.

Now, as a friend of mine said at work this week, "Let's nip this thing in the butt!"

The Love Chain

One of my many childhood Christmas memories is making a paper chain consisting of 25 alternating red and green links. Each year me and my siblings would hang our chains somewhere in our bedrooms and tear off one link a day beginning the first day of December. This handcrafted chain became our countdown to Christmas. It helped us hang on until the big day arrived.

I remembered this Christmas chain as I was pondering how to handle 28 days of chemo and radiation over a six week period. My wife took this thought and turned it into a family project. Carla cut 28 strips of construction paper and divvied them out to herself and our five children. She chose one color for each of the five weeks plus red for the last three days representing the final three booster doses of radiation.

On a Sunday night we sat down as a family to construct Dad's countdown chain. Each person wrote words of encouragement on their individual strips and handed them to me. Without reading a word I stapled each link into a long chain which we then hung on a hook in our kitchen. Amazingly, it reached from the top of my head down to the floor. It was as tall as me!

During those six increasingly difficult weeks I would open the links day by day as the family watched. They wanted to know what the others had written and how I would react, especially when it was one of their own links. It made for a fun morning ritual. Most often we laughed at their silliness.

One of Andrew's links said, "3.14159—I thought you would like some pie!" Abigail wrote on one of hers, "Please don't be grumpy, but if you have to then don't be 'Nathan grumpy'!" Nathan's links were mostly variations of "another one bites the dust." It was Michael who wrote, "You have a big heart. Let's hope it lasts!"

Sometimes the messages were more uplifting. Carla took all of hers from our church hymnal. She knows how I love the hymns and how God often talks to me through them. When facing the adversity of cancer, these words can be quite comforting: "For I will be with thee, thy troubles to bless. And sanctify to thee thy deepest distress."

And finally, it was Rachel who impressed me time and again with her ability to find just the right scripture or quote to boost my spirits. From one of our church leaders, Elder Jeffrey R. Holland, she quoted this, "God never leaves us alone, never leaves us unaided in the challenges that we face."

As I count down to surgery just four days away, I am grateful for a God who never leaves us alone or unaided, and for a family who created a chain of love to help me hold on. I placed each link on our kitchen cabinets after it was read and they remain there still. This fight isn't over yet.

Four Inch Heels

This story bookends the same first visit with Dr. Anker described in the previous post. On arrival at the Radiation Oncology clinic, a medical assistant takes my stats and leaves me and Carla in the exam room to await Dr. Anker. "He'll be along in a few minutes," she says. So Carla and I take seats beside the exam table and I stare out the open door back into the hallway.

I observe there is minimal traffic first thing in the morning. Only the occasional medical looking person walks by. White lab coats appear to be standard issue for the staff. All of a sudden I notice that one of the lab coats drifting by has naught but bare legs and a pair of four inch heels protruding down to the floor.

What? Who wears four inch heels to work? Especially when you work on your feet all day. Could she be a doctor, I wonder? A few of the men passing by are wearing slacks and ties, after all. Maybe being dressed to the nines is no big deal around here. I am explaining my conundrum to Carla when who should pass back by but this staff member on stilts. Now we are both scratching our heads asking, "Where is the cocktail party?"

Then Dr. Anker shows up. During his visit we are told that part of preparing for my radiation treatment includes another CT scan with a barium enema. "The contrast fluid in your rectum gives us the best x-ray images of your tumor," he explains. Can I come back for this in an hour? Oh, and don't forget to change into a hospital gown making sure that the opening is to the back.

An hour later I find myself face down on a CT scanner table with my hospital gown open for business behind me. A radiation therapist enters the room and places a narrow plastic tube into my rectum thereby admitting the barium contrast solution. "Please hold still and keep your head to the side during the procedure," she instructs. I comply. My view is now restricted to mostly a counter top and the floor.

As the radiation therapist crosses the room to run my scan I see the bottom of her lab coat, bare legs, and a pair of four inch heels.

Anybody else?

First of all, I feel the need to thank everybody for all of the amazing support given to me and my family during this adventure. Thank you for your thoughts and prayers, your calls and cards, your emails and blog comments, your cancer questions and stories, your delicious dinners and desserts, your hugs and kind words, your friendship and love. If you're gonna fight cancer, there's nothing like a superlative support group in your corner. Thank you, thank you, thank you!

Now then, on finding myself in a waiting state between phases of treatment, I thought it was time for a few olio acts here on the blog. An olio act is like a musical number performed in front of the curtain to keep the audience engaged between acts in a theatrical show. There are several tales in this turbulant trip that have yet to be told. So let's start the music.

Story participants:

    Attending doctor , Dr. Anker.

    Resident, Dr. Chen.

    Medical student, Brian?

    Patient, Steve (that's me).

Story observer:

    Spouse, Carla.

I am meeting Dr. Anker for the first time to set up my radiation treatments. Carla is along for moral support, taking notes as needed. This being a university hospital, Dr. Anker introduces me to his resident, Dr. Chen, and some random medical student, Brian. Brian will wish he stayed home before this visit is over.

It is a small exam room occupied by five adults. Kinda crowded. After exchanging a few pleasantries and noting my medical history, Dr. Anker explains that he would now like to touch my tumor to determine its exact position for radiation. Would this be alright with me? Sure, I say. Come on in.

Dr. Anker finishes the digital rectal exam, and as I hear him removing his rubber glove he politely asks me if it would be alright if Dr. Chen could touch my tumor? Let's see... My pants and skivvies are down around my ankles and I am still leaning over the exam table. Sure, I say. Come on in.

Moments later, as Dr. Chen is removing his rubber glove, I hear Dr. Anker politely ask if it would be alright if Brian could touch my tumor? Let's see... We need good doctors in order to beat cancer and all good doctors were once students. Sure, I say. Come on in.

Poor Brian. He gloves up and determines to make a good go of it. I feel the difference immediately. His touch is both hesitant and heavy. What doctors Chen and Anker accomplish gracefully in mere seconds takes Brian about sixty. I find myself praying for him the whole time.

Finally, I hear Brian removing his rubber glove. This time Dr. Ankor hands me a box of tissues and invites me to get dressed as he politely turns his back. I see Carla out of the corner of my eye and wonder why she didn't get to touch my tumor.

Anybody else?

Just a quick shout out...

to my professors and classmates at Westminster College. Hi, guys! Thanks for finding my blog, Mark. As you can see I took the semester off to fight cancer. Coming back in January is still up in the air. So much for graduating in May. Yet again my college degree eludes me. But no worries. I'll be back!

Go! Fight! Win!

Rainy Days and Mondays

I love the sound of rain in the morning. I am lying here in bed during that contemplative part of dawn and it starts to rain. Love it! In fact I love fall as the weather changes. It's definitely my favorite season. Give me a good book and some hot chocolate and... never mind, it's Monday morning and I've got to get to work soon. Maybe tonight?

So speaking of good books, I recently finished listening to Lance Armstrong's It's Not About the Bike. (Thanks, Rod.) Wow. What a story. If you didn't know, Lance survived stage four testicular cancer before going on to win the Tour de France seven consecutive times! Makes me wonder what cancer can do for my marathon times...

And speaking of marathons, yesterday was the New York City Marathon. It's been on my wish list for a long time. I mention the marathon because a perfect stranger to me just ran it while raising money for the American Cancer Society. Very cool. Her name is Michelle Czech. I'll bet you're wondering how I know this.

First I discovered Angela Clarno. She's been surviving stage four rectal cancer since May, 2007. I spent the last three days reading her blog, Ang's Journey—powerful, emotional, inspiring stuff. She's a tough fighter, just like Lance. Michelle is Angie's friend. Angie has an absolutely amazing support group. Now I have three more heros in my awesome support group.

Ahhh... can you hear that? The rain just started up again. Thank you rainy days, thank you Lance Armstrong, thank you Michelle and Angie. I think I am ready to take on Monday now.

A great day, times two!

Today is my wife's 45th birthday. Happy birthday, Carla! We just finished eating her birthday coconut cream pie and sent the kids off to bed. They did well today. While Carla took me in for a visit this afternoon with my surgeon, the kids cleaned the house and decorated the ballroom with streamers and balloons. When we got home we had dinner, opened her presents, danced a bit in the ballroom and then settled in for a family movie. Not a bad night. Carla just told me that her best present of the day was having a tumor free husband. I'll explain.

Today makes three weeks out from the end of my chemo and radiation. This is when my colorectal surgeon asked to see me again. He's the one who did my rectal exam to stage the tumor in the first place—the infamous Dr. Bradford Sklow. See my Bend Over post for a description of that exam. So today was the follow up appointment to assess the effects of the chemo and radiation. On a scale of 1 to 10, 10 being the best, I got an A+. Those 28 rounds of radiation kicked my tumor's butt right on out of mine. Take that, tumor, and good riddance!

Today I also got to ride the rectal exam table again. My surgeon went in to take a look around. He couldn't find the tumor anywhere. What is left of it looks more like an ulcer about the size of a dime. Since I started out with a two inch tumor blocking a third of my rectal circumference, that's pretty darn cool. Need I remind anyone that a dime is the smallest coin in the set? Doctor Sklow said he was very pleased with the effects of the radiation. It did exactly what they knew it could do. The results just can't be any better.

Today I am not cancer free, but I am tumor free. What an awesome way to finish phase one of my protocol. All I can say is thank you, thank you, thank you. Thank you, Lord. Thank you, family and friends. Thank you, everyone at Huntsman Cancer Institute. The rest of our appointment this afternoon was spent going over the surgery, the pre-surgery prep work, and signing all of the consent forms. I go in Friday morning, December 3rd, for the procedure. Let's git 'er done!

A Funny Thing Happened...

On the way to the bathroom! But before I proceed any further I need to issue a TMI warning. This is not a post for the squeamish. Actually, since I know some of my co-workers read this blog, maybe I shouldn't share this at all. But in an effort to propagate accurate information relative to rectal cancer and the accompanying side effects of its treatment, I feel it my duty to share what I know from first-hand experience. In other words I, Steve Chamberlin, am the main character in this story. None of this "I have a friend" business. Yes, it happened to me—today, errr (looking at the clock) yesterday, at work, on the way to the bathroom.

You might want to refresh your memory on some of the side effects of my treatment before I get into today's mishap. By saying mishap I am using foreshadowing. It's a literary technique. It lets the reader know what's coming beforehand. Like the music in Jaws. Da-dun... Dun-dun Dun-dun Dun-dun Dun-dun Dun-dun - toodle-oooo. You KNOW that shark is coming! Now how did we get out in the middle of the ocean? Anyway, consider reviewing two previous posts: The Good, The Bad, and The Ugly, and Full Disclosure (just click on their name).

In the Full Disclosure post, I talk implicitly about the unmentionable side effects I encountered during chemo and radiation. I did think about editing that post and simply adding item 5 to the list. In fact, my wife mentioned the same idea. She enters into the story a little later as my trusted side kick. As in, "Who ya gonna call?!?!" Yep, more foreshadowing. An important recollection from this same post is my use and connotative definition of the word laugh. Laugh is often another word for "we'd really like to cry right now." It absolutely applies here as well. So let's cut to the chase.

I pooped my pants.

Seriously.

And I know what you're thinking. "But Steve, you're 48 years old!" Trust me. I know my age. I was present for all 48 of my birthday celebrations. Suffice to say my wife had to console me more than once that this wasn't my fault. But I'm getting ahead of myself. [Cue guitar music here.] "Let's start at the very beginning. A very good place to start."

The most annoying side effect from my radiation is partial incontinence. My poor bum got a daily dose of radiation for six weeks after all. The surrounding tissue and nerves got rather fried—making bowel movements not only painful, but hard to predict and control. I went from being able to vacate my storage tank at my convenience to having a thirty second to one minute notice. Translation—when I first get the notion to go, it's time to go. Now. Get out of my way. So far I've had some close calls, but only one miss before today. That's item 3 on the list by the way. Fortunately I was at home for the first one. I was not so lucky for mishap number two! (I just love double entendres.)

It happened all of a sudden. I was busy at my desk when I received the BM notification. Of course this one came with an urgent flag. I rose from my chair on recognition and headed towards my office door. And just like that it manifested itself—all on its own, mid stride, soft and warm. On reaching the door, I just stopped in my tracks and closed it, waiting as the horror wafted over me.

As for what happened next, why I called my wife of course. The words "for better or worse" come to mind about now. God love me, she was home! Carla rallied to bring me a change of clothes with a wash cloth and towel. My office be praised, they have a locker room on site with showers. So thirty eternal minutes later I was able to get cleaned up and back to work. I gave Carla a heartfelt thank you kiss before she drove off into the sunset. OK, it was actually early afternoon so there was no sunset, but aren't heros supposed to ride off into the sunset?

After today I officially relegate rectal cancer a pain in the butt. Butt, it does make for some great stories!

Just to be on the safe side!

Cancer Doesn't Cure Anything

When I first got my diagnosis of cancer I naively thought I would wake up the next morning and somehow, magically maybe, be a better person. Turns out that's a false assumption. The very next morning I was the very same person, faults and all. Bummer.

So what about the saying, "That which doesn't kill us makes us stronger?" To that I say, "Surviving cancer is not my first choice for getting stronger!" I wouldn't wish cancer on my worst enemy. When it's do or die, most people choose do. They want to live. In that sense cancer patients aren't really heros, they simply do what it takes each day to stay alive. Now to be fair, some do it with more finesse and grace than others.  And no matter their personal preference for dealing with cancer, all cancer patients are left forever changed.

But cancer doesn't cure anything. In fact, from a medical perspective it destroys everything. So what good can cancer do? It can provide an opportunity for growth. Something to smash against while smoothing our rough edges. Being a better person requires opposition. Cancer provides a capable opponent to help us hone our character and qualities. God often uses such trials to the benefit of his children. I find hope in these words attributed to Robert Keen (ca. 1787):

     When through fiery trials thy pathway shall lie,

     My grace, all sufficient, shall be thy supply.

     The flame shall not hurt thee; I only design

     Thy dross to consume and thy gold to refine.

I really do want to be a better person. But I don't get to be a better person just because I have cancer. It's what I do with my cancer that matters. My wife reminded me today that I am not the same man she married. She assured me that I am much improved. So I am already better than I was. And in only 18 years! That's encouraging. By the grace of God my cancer may yet prove useful. Since I am already fighting my cancer, perhaps I can get more from the fight. A little poem I learned in high school comes to mind.

     Good, better, best,
     Never let it rest,
     'Til the good is better
     And the better best.

Why did I get cancer? Why not? Maybe cancer can help me be a better person. One thing's for sure, I won't be alone in my quest.

     Fear not, I am with thee; oh, be not dismayed,
     For I am thy God and will still give thee aid.
     I'll strengthen thee, help thee, and cause thee to stand,
     Upheld by my righteous, omnipotent hand.
     (How Firm a Foundation, text attr. to Robert Keen, ca. 1787)

With God and all of you on my side I'll get the better of you yet, cancer!

Seven Days to Better Health

What a difference a week makes! Take every side effect from the chemo and radiation and cut it in half. That's about where I am at today. It's nice to be able to say, "I am back to just being tired." My energy is doing much better. I can get an 8 hour shift in and only be tired when I get home (as apposed to falling asleep right away). Very nice. It is emotionally empowering having the chemo and radiation behind me.

This afternoon I had a followup appointment with my radiation oncologist. He was very pleased with how I am healing up. Which basically means my butt is getting better. Yay! Also, all indications are that the treatment did it's job. Double yay! We beat up my tumor! He also said I handled the treatment extremely well considering what they threw at me. While I'm glad for the compliment, it left me wondering what other cancer patients experience during their treatment. Holy moly!

My date for surgery is penciled in for Friday, December 3rd. That is the week after Thanksgiving. I will meet with my surgeon on Thursday, October 27th, to go over the results of the chemo and radiation as well as to confirm my date for surgery. I like the date. It will allow me to enjoy Thanksgiving and be recovered enough from surgery to enjoy Christmas. Let's think of my surgery as an early Christmas present. I'll donate my rectum to science and in return I'll be cancer free!

Merry Christmas, everybody!

Measuring the Marigolds

Me: (humming)
     Two and two are four
     Four and four are eight
     Eight and eight are sixteen
     Sixteen and sixteen are thirty-two

You: Hey, what's up, Steve? You're in a good mood.

Me: Yep. Had a good day at work.

You: Cool. How's that?

Me: Well I just finished six weeks of chemo and radiation, right?

You: Sure. Must have been tough.

Me: Yeah, it had it's moments. I didn't like missing so much work.

You: So what made today special?

Me: Simple addition.

You: Huh?

Me: Four and four are eight, buddy. I just worked my first 8 hour shift in over a month!

You: Congratulations!

Me: Thanks.

Both: (humming together)
     Two and two are four
     Four and four are eight
     Eight and eight are sixteen
     Sixteen and sixteen are thirty-two

Full Disclosure

Carla and I realized the other day that there are a few side effects and incident mishaps from the chemo and radiation that we haven't shared with everyone. You could call them the unmentionables. Some made us wince, others made us sad, the rest just made us laugh. Laugh is often another word for "we'd really like to cry right now." In an effort to share these experiences fairly we thought we'd at least list them here.

1.
2.
3.
4.

Don't worry if you can't read the list. It just means you are not one of my doctors or nurses. They have a unique way of getting every last detail out of you and even reading between the lines. I was hoping to keep at least a few things to myself. Is nothing sacred? Oh well. Now I guess everyone gets to know.

Everybody cover your ears.

Wooooo Hooooooo!!!!!!!

(Thanks for the woo hoo, Aaron.)

OK. You can uncover them now. But why the cheer, you ask? Easy. We made it through my chemo and radiation treatments yesterday! Take that, cancer!! Every minute I feel myself getting better and stronger. At least that's what I'm thinking in my head. My body hasn't caught on yet. I offer the last 24 hours as evidence.

Of all the side effects listed for my chemo and radiation there were still a few we never encountered. Take constipation for example. At 1:30 Thursday morning we checked off vomiting. No kidding. I went 27 of 28 treatments without throwing up once. So what better to do on the last day than to puke my guts out.

I didn't feel like going in to work after that but I went anyway. I'm burning through my sick leave faster than it's accruing. By the time I got to work my feet decided to flair up making me hobble to and from the restroom all day. I'm either at my desk or in the restroom when I'm at work so that's why I mention my hobble path. Isn't there a song about a crooked man who walked a crooked mile? I know there's a song about diarrhea.

Anyway, the icing on the cake came right after dinner last night. No, I'm not talking about dessert. I had exactly three more chemo pills to swallow. We cheered as a family on seeing the empty pill bottle and then dad, that's me, threw the pills into his mouth and chased them down with a half glass of water. It's important that I mention the half glass of water because the glass really was only half full. After the chasing the pills down with water part of the story the glass was now empty. That's also important to know because of what happened next.

The last pill got stuck in my throat half way down. Go figure. Now had the glass been full of water this is no problem. It was trying to get my wife's attention to refill my glass while not gaging on the pill that makes this a story at all. My kids are watching me choke while my wife runs for more water. I just want all three pills to stay down because I'm not up to taking any more, thank you very much. Nice way to end my treatments. Of 196 pills swallowed over the last six weeks, what are the odds of the last pill being the first and only one to stick in my throat? It kinda chokes me up just thinking about it.

Hopefully you're on my side by now when I say that the last 24 hours have conspired against me. As the final piece of evidence please note the time of this entry. I'm still up. And why is that? Because I've been running into the bathroom every 30 minutes for most of the night. I should be completely empty by now and I am certainly tired. Let's see if I can get a bit of sleep now since I have to be back at the hospital by 11:00 for another test. Good night, everybody. Thanks for all of your support these last two months and thanks for celebrating with me on the end of round one. Next up, surgery.

The Good, the Bad, and the Ugly

The good is that tomorrow is my last day of chemo and radiation. Can you say, "One more day!"

The bad is that after six weeks of daily chemo and daily radiation my poor body is shot. As in no energy—zero, zip, nada. I am good for about four to six hours when I wake up in the morning and then it's nap time. My neighbor, Mark, drives me in to work if I'm up to it. We decide each morning. If I don't go to work then I crash on the couch until time for treatment. If I do go to work then Carla, my wife, picks me up at 2:00 in the afternoon and takes me to Huntsman Cancer Institute for my radiation. Then I go home and sleep until dinner. Usually I fall asleep in the car coming home. So that is the good and the bad.

The ugly is the angry red rash on my forearms and hands, my blistered and sensitive feet, my swollen fingers and toes, my raw throat, my chapped lips, my sore bum (inside and out), my upset stomach, and my overall achy body. We won't talk about what comes out of my digestive tract. Just two nights ago Carla let out a gasp as she went to apply lotion to my backside. It gets red from radiation burn. When I asked about her reaction she said my skin had split vertically opening up a crack just below my tail bone. That means I have a crack inside my plumber's crack. Pretty cool. Maybe with a hand mirror I could see it too. I tried to calm Carla by saying that cancer just cracks me up. She didn't appreciate the humor this time. Bless her heart, she has fought for six weeks to keep my side effects at bay only to have a new one show up in the final week of treatment.

At this point I think I'll throw in a bonus to the good, the bad, and the ugly. How about the pretty?

My wife is pretty amazing, pretty awesome, pretty incredible, and pretty darn persistent when it comes to getting me through this cancer adventure. I'll even say that she is just plain pretty. It is pretty comforting having a companion, helpmeet, nurse, massage therapist, and friend for a wife. Since she can't take the cancer away, she is doing her absolute best to minimize everything else. And she's doing a pretty fine job. Her love and devotion to me and our children paints a pretty picture indeed. I love you, pretty woman!

One Step at a Time

That is how we are going to beat this thing. The cure for me comes in four steps. Here is the game plan.

1) Six weeks of daily chemo and radiation to shrink the tumor. That's 28 treatments with weekends off.

Radiation every afternoon at 3:05 (minus the blanket).

Xeloda—chemo in a pill!
I take four of the large ones after breakfast and three more large ones after dinner.

2) Surgery in November to remove whatever is left of the tumor plus all of the surrounding lymph nodes (basically the whole rectum).

Who needs a rectum anyway?

I will also have a temporary ileostomy to divert bowel traffic while things heal.

Ileostomy—draining from the small intestines so the resected large intestines can heal.

3) Four to six months of additional chemo on the chance that some rogue cancer cell wants to try and kill me later.

Cancer cell—Rogue Leader

4) Surgery to reverse the ileostomy followed by a lifetime of learning how to use the new plumbing.

Don't worry, be happy!

The whole process will take until May or June of next year. So... one step at a time. As of today I am in week five of step one. This afternoon I received radiation treatment 22 of 28. Only six more to go!