Here We Go Again?

Just as a reminder, Steve is back on chemo again and just completed his first of six rounds. The good news is that he was able to get to work every day. The not so good news is that by the end of the two weeks he was showing many of the side effects that took him 3 1/2 weeks or more to get to before. This really wasn't what we wanted to have happening at this stage. Steve still has 5 more cycles he needs to get through. We have made a list of everything that is happening and are hoping that they will lower his dosage so that he can stay healthy, since they said they didn't want him to get as bad as he did before his surgery.

On a happier note, the kids came up with another plan on how to help get Steve through his chemo. (Last time they made him a paper chain with messages for him to read each morning.) They talked about doing that again, but it would have been an extremely long chain and they want to cheer him up, not depress him. This time they decided to split up all the weeks he has to take chemo during. Each child, as well as myself, have two assigned separate weeks that we are in charge of. What each person does during those weeks is totally up to them and how creative they want to be. During their week, they try and keep it a secret as to whose week it is. However, they seem to be enjoying letting him know who it was at the end of their week.

Michael insisted on taking the first week. Some of the things he did were making Steve's bed just the way he likes it, filling a jar with marshmellows for Steve to keep on his desk at work (They are recommended for Steve to eat to help with his ostomy and just happen to be one of his favorite treats.), gave him a coupon for Subway plus the cash to pay with, a miniature box of cereal, a batch of homemade peanut butter cookies, and a note or poem to go with whatever he chose to do each day. The last one that he wrote to go with the peanut butter cookies went like this:

I made you a treat, oh so sweet, that nothing else can beat.

Helping you has been real neat. Now you probably want to eat.

So, go and have a seat, maybe later we will meet.

Steve's second week began with a clue to lead him to his surprise. It said,

You're a "Champ"!

Keep up the fight

against cancer

and freeze it

in it's tracks.

The surprise was a champ ice cream treat hidden in the freezer. It was followed the next day by a mounds candy bar (Your "Mounds" of fun and really sweet... In your room you'll find a treat! Keep it up!), a bag of original corn nut chips (Here's a corny message: Even when your chips are down, we're still nuts about you. Hope you have an original day!), some homemade waffles for breakfast in bed one morning, and NECCO candy with this poem:

Neat

Excellent

Cool

Courageous

Out-standing

Everyone seems to be having fun with their weeks so far and Steve never knows when or where he will run across some little surprise. That should help to keep him on his toes. Anyway, we are all hanging in there and doing our best to get through this next phase of Steve's cancer. Thanks for all your love and support. Carla

Catching Up?

Hi again everyone. Steve has been wanting me to do another post for a while now, but there always seems to be a pile of other things that really need my immediate attention. (I'm sure no one else knows what that is like, right?) I finally decided to just put everything else on hold and try to catch all of you up on my last six weeks. (I can't believe it has been that long!)

Ever since we got back home from the hospital, it feels like all I have been doing is playing catch up. It began with my trying to get caught up on my sleep. I have decided that hospitals are not the place to get a good nights sleep. There are far too many beeps, bells, nurses, etc. to allow for that. By the time Steve got to go home, I was thoroughly exhausted! I pretty much just crashed and went into minimal survival mode for the first couple of weeks. When I finally had a bit of energy to work with, there was a backlog of housework, paperwork, and last minute Christmas projects that all needed my attention. (All I can say is thank heavens for the internet. I was able to order the last few items I needed for the kids, mainly books, and they were delivered to my doorstep. It doesn't get much more convenient than that.)

Christmas was exactly what I needed it to be, simple and relaxing. We have had a tradition for years now where our breakfast is in our Christmas stockings. This means the only work involved for me on Christmas morning is washing up a few breakfast bowls and spoons. The breakfast serves dual purposes. The kids always get a kick out of eating their way through the items in their stockings and it helps fill up the bulk of their stockings. The problem with knit stockings is they stretch and so it takes quite a bit to fill them up. By putting breakfast in the stockings it means there is less room for junk food and chocolates. Once you put in oranges, apples, grapefruits, nuts, hot chocolate, an individual sized box of cereal, etc., there isn't nearly as much space to fill. (The stockings we use were hand-knitted by Steve's mom for each of the children and play a big part in our family Christmas traditions.)

The week following Christmas is a bit of a blur to me. I tried to get things in order around the house before the new year started up. What I can remember is that I managed to get the Christmas decorations down and put away just before New Years Eve and I organized the storage area in our basement. I'm afraid I slept through the New Year's celebrations. We usually bring in the New Year at our neighbor's across the street. I managed to eat dinner over there and then had to come home and lie down. I slept clear through until morning. Actually it was probably the best New Year I could've had under the circumstances, I just missed spending it with my sweet heart and getting my traditional New Year's kiss.

I went back to work on January 3rd, but fortunately only had to work on Monday and Tuesday for the first couple of weeks. We had to test the entire school's student body for their mid-year assessment tests. I was part of a team of 7 - 9 people. It was a nice way to get back into the swing of things at the school. I had been gone from the school since Thanksgiving break (Nov. 23 - Jan.3). My job this year has me working specifically with the second grade as a teachers aid. I work with kids who are behind in their reading skills. The school staff has been really supportive of me during all this cancer craziness. When Steve got sick with his chemo and radiation treatments, they allowed me to take a three week leave of absence and then again while he had his surgery. Anyway, the testing helped me pinpoint where there are problems and I'm now starting to tackle them in small group settings.

I really needed the shortened work week at the start of the year. I had been trying to get on top of all our financial paperwork and bills, but that is next to impossible with a house full of kids. Thank heavens, I was able to get on top of it before I returned to my regular work schedule. My mom came and helped me to organize all of the billing paperwork from Steve's cancer treatments. I had organized what had arrived before Steve went into surgery, but a huge pile showed up over the next several weeks and I felt too brain dead to make sense of it.

The last area I've been trying to get caught up on is Steve's health. His poor body has been through so much these last few months. I have been trying to feed him healthy food and vitamins, gone walking around the neighborhood with him to build up his strength and endurance (He has a one mile loop he likes to do, but had to work up to after surgery.), given him massages, stocked up on drinks with protein and electrolytes (Those are extremely helpful with his ostomy.), etc.

I have been amazingly fortunate in my dealings with Steve's ostomy. Over time, we have learned a few tricks that have been helpful in taking care of it. Anyway, I think we have it down pretty well now. The trickiest part is when we have to replace the wafer. We have learned that we need to swap his wafer out on a three day rotation. If we try to go longer than that he starts to burn. We ended up staying with the same brand of product they used at the hospital. We tried a couple of other styles, but they would start having problems within a day, which is way too stressful! (I won't go into any more details about all of this, but if anyone needs to know the tips we have picked up, leave me a comment and I'd be happy to share them with you.)

Our most recent adventure has been Steve starting up chemo again and returning to work full-time. Neither one of us is happy to begin chemo again. If Steve was in his 70's or 80's and we were done raising our children, I think we would both choose to probably skip it, but Steve doesn't want to risk a possible recurrence. He wants to make sure he does anything he reasonably can, so that he can finish raising his kids and dance with me at our 50th wedding anniversary. (That just proves how very much he loves me and the kids.)

Sorry this post was so long, but it is catching up on six weeks. Thanks for all your comments and the support so many of you have given Steve and myself. It has really been a blessing in our lives. God Bless You All . . . Carla

Taking a Timeout

I've decided to take a brief break from the blog. Might even go for a walk. Perhaps I can persuade Carla to post again.

TTFN, Steve

Goals

I made the comment to my daughter a few nights back that I needed to work on not being a bum. I think I let cancer set me adrift. It's time to pull myself together and be a bit more productive again. Within reason, of course. I want to take my life back from cancer. We may have to get along together, but I'm the boss.

Then this morning I open an email from a friend who suggests I set some non-cancer goals to help me get through the next four months of chemo. Four months of chemo is daunting, but if I set some simple, short term goals it might make it easier. OK. I get the hint, God. So here are my initial thoughts.

I haven't set and kept an honest-to-goodness goal in forever. Sort of. I laid out a three year plan to complete my college degree by May, 2011. Starting in May of 2008 I charged through 25 straight months of night classes without a break. Then last summer I caught my breath and spent a week at Scout camp with my boys followed by a colonoscopy. School got put on hold and cancer has been running the show ever since.

This week I will figure out where my time is being spent. What am I doing with my 24 hours each day? Realistically I have priorities, but surely there is room in my life to enjoy reading a book or learning a new dance step on purpose. (No seriously, Carla and I love to dance. That's why we built a ballroom in our basement.)

Carla's birthday, 2010

Carla and I also set a goal on Saturday to eat at our favorite Thai restaurant in three weeks. My chemo goes in three week cycles with 14 days on and seven days off. We thought it would be fun to eat out at the end of each seven days off. So that makes two goals. Yummy!

Another thought. I borrowed a book in December that I'm several chapters into but haven't read since the first of the year. Not only did I receive three new books for Christmas, but Fiona recently shared several more book recommendations. Instead of being overwhelmed and getting nowhere, how about I finish the book I'm on during this first three week cycle? Once I'm back in the habit I can then look at what I want to read on my own and what would be fun to read with a group of friends. Fiona oops! Carole suggested the group idea, and I like it.

Carole

Fiona

My commitment this week, then, is to use my time more wisely, making room for some fun and chemo-appropriate activities. In three weeks I will have finished reading The Overton Window and celebrated completion of my first chemo cycle by taking Carla out to our favorite Thai restaurant. Thanks for the email, Fiona. How's that for goals?

Argh! Grrr!! Aaahh!!!

There.

I feel much better ...



... for now.

If I have to explain this, you don't have cancer.

Fiona's Question

In my last post, Fiona realized that based on my scar I must have had open surgery. This lead to the following comment:

"I'm following your story, Carole's story and another story of rectal cancer by a poster on Cancer UK called Graham. (Carole will know who I mean). All 3 of you have had surgery, though I think you are the only 1 of the 3 with a temporary ileostomy.

I think, (Carole will probably remember better, as you know rectal isn’t my speciality area!) that you are Stage 1, Carole a Stage 3a and Graham hasn’t had his pathology results yet.

Please explain, how come that with a Stage 1 tumour you had open surgery (judging by your impressive scar) and Carole with a Stage 3a had keyhole/laparoscopic. Graham also had keyhole/laparoscopic surgery and he too now has a permanent stoma.

Is the different surgical technique to do with the location of the tumour?"

The answer lies buried among my earlier posts plus a few things I haven't shared. I thought a new post would serve to summarize all of the information and answer Fiona's question. (Oh, and thanks for the complement on my "impressive" scar, Fiona.)

When I was first told I had cancer the doctors had found a 2 inch (5 cm) tumor located about 2 inches inside my rectum. It was reachable by finger which, you'll remember, four people did. My diagnosis was stage II rectal cancer (T3N0M0). It was a large, invasive tumor with no lymph nodes involved and no metastasis.

My tumor as discovered during the colonoscopy

After being examined by my colorectal surgeon, Dr. Sklow, his first response was that he was positive he could save my sphincter, but that it would be very close. If radiation and chemo therapy shrunk the tumor first, there would be a larger margin. This meant that he would use surgery to remove the tumor and most of my rectum with enough rectal tissue left over to reattach the colon from above, leaving me with a working anus. While I had a low rectal tumor, Carole's was even lower, leaving little or no chance for saving her sphincter.

I asked Dr. Sklow at the time if he would do open or laparoscopic surgery. His training and preference was open surgery, so I accepted that. He did explain that a male pelvis does not expand like a female pelvis since men are not designed to give birth. A low rectal tumor meant that he would be working down in my lower pelvis, which is like working at the bottom of a cone. There is not much room and plenty of other things in the area to be avoided, particularly various nerves controlling urinary continence and sexual functionality, two things which I heartily agreed were important for quality of life after surgery. Open surgery gave him the most room to work and better visibility.

Six weeks of radiation and chemo therapy not only beat me up, but it kicked my tumor's butt. When Dr. Sklow examined me after this treatment, he was pleased to report that my tumor had shrunk, looking more like an ulcer the size of a dime. Surgery was scheduled for two weeks later giving the residual radiation and chemo more time to work. By the time I was in the operating room all he could find of the tumor was a small scar. The pathologist later confirmed this, and my diagnosis was changed to stage I rectal cancer (T1N0M0).

Another reason for the open surgery is that Dr. Sklow hoped to construct a colonic J-pouch if I had enough room in my lower pelvis. This would give me a new storage tank since my rectum was being removed. Again this had more to do with quality of life after surgery. Click here and scroll down to see a sketch of what this is and how it is created. It seems to me a J-pouch would be difficult to construct laparoscopically.

I am now the proud owner of a new colonic J-pouch, which leads me to the temporary ileostomy. I am not allowed to use my new storage tank yet. Diverting bowel traffic at the end of the small intestines gives all the new plumbing below that point time to heal.  Once the doctor tests everything under pressure, making sure there are no leaks into my abdomen, the ileostomy will be reversed. Not sure I am looking forward to the pressure test, but better to find a leak with harmless fluids than with toxic bowel stuff.

In the end (Did you catch the rectal cancer humor?), Carole and I had two different surgical procedures. Hers was an abdominoperineal resection (APR) while mine was a low anterior resection (LAR). The following two illustrations show the difference.

Steve's procedure

A, Low anterior resection; B,C, coloanal anastomosis; D, j pouch construction creating a reservoir.

Carole's procedure

Abdominoperineal resection with colostomy.

Now having hopefully explained my reasoning, I would have to say that the short answer to Fiona's question is, "Yes, tumor location made all the difference in our scars." Thanks for reading the longer version.

My scar is bigger than your scar!

Carla and I met with my surgeon and my oncologist this last Thursday. We now have a game plan for the next part of my cancer treatment. While surgery removed what was left of the tumor and all of the surrounding tissue, I will be receiving additional chemo therapy as insurance against any rogue cancer cell left in my body causing future problems. We do not want to risk recurrence.

I will be given six rounds of chemo therapy, with each round being a three week cycle. Each cycle consists of 14 days of capecitabine (Xeloda) tablets followed by seven days off for recovery. Then we do it again. Two weeks on, one week off, six times for a total of 18 weeks. I will take these pills at home just like last time. Xeloda is the same drug I took before surgery. We are using it again since it was extremely effective the first time. I start mid January and should finish by the end of May if all goes well.

My surgeon is very pleased with my recovery. I am now one month out from surgery and everything seems to be healing and functioning well. Dr. Sklow has cleared me to go back to work as well. I plan to work part time at the office for the next two weeks while building back up to full 8 hour shifts. I actually went in for the first time this afternoon and put in a few hours. Of course I had to take a nap in the middle of it. I have a fold up matt I can lay out in my office for just such occasions. Funny that it takes 4 hours at the office to get in 3 hours of work, but it's a start.

My dad had open heart surgery several years ago and bares a nice scar on his chest to prove it. My scar picks up where his left off and continues down my lower abdomen. He hasn't seen me since before my surgery so he's been full of questions. Dad, I'm posting these two pictures so you can see for yourself what I've been trying to describe over the phone. The rest of you don't have to look.

This first picture was taken two weeks after surgery just before the staples were removed. Carla measured the scar at eight inches (20 cm). The incision was closed with 34 metal staples. A nurse came to our home to remove them. She used a stainless steel staple remover to pull them out one at a time. I only remember saying 'ouch' about four times. But then I did take two oxycodone pills an hour before she arrived.

The other part of the picture shows me holding my ostomy bag aside. A loop in my small intestines was pushed through my abdomen to the outside. This loop was cut so that it drains into the attached bag. The purpose for this is so that my large intestines can heal from surgery. All but the last inch of my rectum was removed and a new storage tank (called a colonic 'J' pouch) was constructed from my large intestines and then attached to my remaining rectum. That's a lot of very small surgical staples inside of me. Nothing comes out at the bottom for now. Dr. Sklow will reverse the ileostomy about a month after the chemo stops. Then I get to use my new plumbing for the first time. Should be fun.

This second picture is about 3 weeks after surgery with the staples removed and a fresh, opaque ostomy bag in place. Normally this bag gets tucked under my clothing and is kept out of sight. I can open the bag at the bottom for draining as often as needed throughout the day. It's just a different way of handling bowel movements. If you enlarge the photo you can see all of the little yellow bruises on my belly from the Lovenox injections. I am definitely glad to be done with those.

So here's to being half way done with my cancer treatment. Next up, more chemo therapy followed by another quick surgery to reverse the ileostomy.

At the Hospital

Huntsman Cancer Institute—Salt Lake City, Utah

I am surprised at how few pictures we took during our seven day hospital stay. Fortunately, Grandma took a bunch of pictures with her camera. Unfortunately, I don't have access to them yet. So here are three pictures from our own camera. I'll post more when I get the rest from Carla's mom. You can click on any picture to enlarge it.

I had my surgery on a Friday morning. This picture was taken Sunday afternoon when Carla's mother brought the children out to visit. The nurses preferred I spent time in this chair if I was awake. I had just started eating soft foods that day. You can see the soup, sandwich and jello on the tray. Carla took the children on a tour of the hospital while I ate my lunch. Then the kids went with me on my walk around the fifth floor corridors. This was the first time we were all together since Thursday night. It was a fun visit.

Our family

Tuesday morning I got unhooked from all of my tubes and IV's. Carla took this first picture of me as a free man. She said I had lost my shadow. That's what she called the IV stand that held everything and had to follow me everywhere I went. Abigail gave me the teddy bear on the window sill. She had slept with it for weeks and given it lots of hugs before sending it with me. Thanks, Abby, for the bear hugs. The knit hat on the bear was hand made and donated to the hospital for patients to enjoy. I chose it from a basket full of hats with bright colors and pom poms. Thanks, anonymous donor, for the hat.

There are no strings on me!

Wednesday morning my wife hands me the cell phone and says that my niece has a question for me. Nauni and her husband, John Michael, live in Arizona. When I say hi to Nauni on the phone she wants to know how to get to the hospital from the airport. Surprise! They had flown up for the weekend and wanted to see us at the start of their adventure. And you wonder why I always tell her she's my favorite niece. We took them up to have lunch on the top floor of the hospital. There is glass all around the restaurant with beautiful views of the Salt Lake valley. Thanks, guys, for an awesome visit!

My favorite niece, Nauni and John Michael

We appreciate all who stopped by my room to visit with us. It was great seeing everyone. Thanks for your support. Sorry we didn't think to take more pictures. We'll have to see what's on Grandma's camera.

The Buzz Cut

NOTE: This event took place on Thursday night, December 2, 2010.

'Twas the night before surgery

And my hair was too long,

So I let the kids cut it

Until it was gone.

In just a few minutes

The children were done.

They did a great job,

and we had lots of fun.