It's Been 2 Weeks

So it's been 14 days since I got my Chemo treatment. I thought this might be a good time to let everyone know how things are going these days.

• My pain is a lot better. Before the treatment I had to take pain killers every 4 hours or so. Now there are often times when I totally forget about the cancer and I can go for most of the day without taking anything.

• My speaking and eating are getting better. I definitely notice a difference when eating. I get to use the right side of the mouth more and more. Chewing is noticeably better and less uncomfortable.

• The cancer is still there and it's still big. It does feel slightly smaller when touching it. Might just be wishful thinking. The area around it, however, is less swollen and less sensitive.

• I still have all my hair.

• I am more tired throughout the day. Exercise is harder but I'm still working out every day (Mostly running).

• I haven't really been nauseous since the first three days after the treatment. My appetite is good (I have gained a couple of pounds over the last two weeks).

I am scheduled for an appointment for July 9th where they will check my blood chemistry and probably administer the second round of Chemo shortly after that.

Well, so far so good.

David

David took some time off from his work and family and decided to come for a longer visit from yesterday afternoon until this evening. We did pretty much anything two grown men would have to do in two days: We played a game called 'Heroscape', ate burgers and fries, played guitar, watched a movie, had Sushi lunch, went for a run, visited Long&Mcquade and spent a lot of time talking. How much fun is that for 24 hours? David also brought their family dog 'Hudson' who he left behind for another day so we could babysit her. We love Hudson and it is nice to have dog in the house again.

David and I went to Las Vegas last December where he ran the half and I the full Marathon. Today, as we went for a run I had to walk every two minutes or so. I assume that one of the reasons for my lack of endurance is my low red blood count at the moment due to the Chemo. Strange how life can change in 6 months...

Anyway, I had a great time David. Let's do it again soon.

God

I talked to God yesterday.

O.k. I'll back up a bit.

I have been a religious person of various degrees throughout most of my adult life. When I was a teenager I became a 'born again' Christian and converted from my Lutheran roots to the local Mennonite church. I was pretty into it then. I handed out pamphlets, lead the church choir and toured with my own Christian band where I preached and made altar calls. Until I was in my mid-twenties I was very strict about my faith. But then life became a bit more complicated and I abandoned my fundamental view and replaced it with a more liberal 'I think God exists in some form' approach. A vague personal religion without all the exclusivity of Christianity that I believed in so strongly years earlier.

I haven't attended any church for about ten years. I also haven't really spoken a prayer that (I'll be honest here) felt as if anyone was really listening for more than 20 years now. Until yesterday.

I was going for a run. I still run but I am feeling the effects of the chemo a bit so I go slower and walk a bit more once I feel exhausted. I ran for about 3 miles and then decided to walk the last mile home. I took off my headphones and thought that this might be a good time to say a prayer. So I talked out loud while facing toward heaven. 'Dear God' I said. 'I come before you and I ask of you...' then I paused. 'Ask of you?' -what kind of language is that? 'I'm sorry' I continued out loud 'Do you mind if I speak to you in normal English?. You know that I respect you but I these old standards don't really work for me anymore.' And so I just continued to talk about whatever came to my mind while facing forward now. Like talking to a friend walking next to me. Mostly I said that I was grateful about all this great stuff that is happening to me since my diagnosis. But, of course, I also made a few requests. 'I don't know if you gave me this cancer for whatever reason, or if you have some hand in it, or if you're just watching nature unfold but I really need your help.' Overall this conversation went for about 20 minutes until I was home. I said my goodbye and ended with 'Let's talk some more tomorrow. Thanks, though, that was fun.'

When I got home I knew in my heart that someone was listening.

To all the bikers and joggers out there that passed a slightly overweight tall guy with a German team soccer jersey who was talking out loud as he was walking down Wellington Crescent-That was me.

Home Studio

This has been a pretty good week. There were a lot of hours where I forgot that I had cancer and life was almost normal again for short periods of time.

Physically things are very good at the moment. The chemo did not show any real side effects since Sunday. This has me worried, though, as I am afraid that it doesn't really do anything. I'm sure that that's not true and that I am just lucky the way my body reacts to the treatment, but one can understand my paranoia. My tongue is definitely bothering me most of the time, but the actual pain has gotten better since last week. I take less pain killers now since the chemo. Talking and eating is also a little easier at the moment. All of this might be psychosomatic but I take what I can get.

Stefanie and Angus came over twice this week to play one of my longer board games. We ate together, laughed and talked about all kind of things. The topic of cancer was the smallest subject of those evenings. For a short time it was Olaf's life like it used to be two months ago.

The biggest deal for this week was that I moved a carbon copy of my work studio into my home. Because of the risk of getting a cold or other problems during my chemo treatment, and my less than normal amount of tiredness, Clint and I agreed that it would make sense to build a studio at home where I can work as much as I would be able to over the next few months. Things are changing a bit at daCapo and we had a lot of extra gear at the moment so this was actually a pretty easy thing for us. Kevin spent almost three days with me during which we built a workstation desk and moved a lot of gear into my new home office. I am excited. Even though I needed the last few weeks to recover from the shock of having been diagnosed, I am slowly ready to be productive again. The fact that I can work in small portions until I get tired or occupied by other things is going to be therapeutic in the long term, I'm sure.

Well, here we go. Let's make some music...

The Day(s) After

After a rough day on Friday, I had another rather rough day on Saturday. I felt ill most of the day and had the feeling that I almost have to vomit all the time. I was too hungry not to eat and too sick to eat. No fun at all.

Tara, Peter and Mila came to visit in the afternoon. Donna and Dave also dropped by briefly. It was nice to be with friends but I was pretty tired by the end of the day.

Today (Sunday) is a lot better. I did sleep a lot (two naps in the morning) but I was also able to get out shopping for a bit and hang out outside. The nausea was considerably better. The day felt a lot brighter.

Looking forward to start a new week of life tomorrow:)

Chemo Day 3

Today I had my last of the first three treatments. Again, the session was short (about an hour) but today I really felt the effects. Dacapo had a BBQ party which I attended for about 10 minutes. After that Angela had to drive me home as I felt quite sick and nauseous. I spent the afternoon between sleeping, feeling sick and tired.

Hopefully this will not last for too long.

Ron and Laura called today. It was really nice to talk to them.

Stefanie dropped off some baked good again. She's awesome (and so are the squares).

Chemo Day 2

Today was a rather uneventful day compared to yesterday. The chemo treatment was short (about an hour) and I was out of there by 11:00 AM. I was pretty tired for most of the afternoon. I think I slept for about 3 hours but was otherwise fine and up for things.

So far so good. One more tomorrow.

Friends

It is now 12:30 AM and after sleeping for most of the day I have trouble getting to bed. It feels like the right time to talk a bit about the community of friends that have carried me through this last month.

Of course there is Clint. Being more like a brother to me than a friend he as quietly and patently carried the burden of worrying about me and continued the operations of our company by himself without ever complaining. Even though he doesn't say so, I assume that the last few weeks at work have been difficult at times. When Angela was still in Thompson during the first few days after the initial diagnosis he made sure that I didn't have to be alone by visiting and spending the night. When I woke up at 3:00 AM covered in sweat and panicking it meant the world to me that I knew that he was sleeping next door.

And then there is David. I always considered him a good friend but his level of support and involvement truly surprised and touched me. He has called almost daily to see how I feel and to make sure that he is aware of every development. He visited often and spend a few nights here, not wanting me to ever be alone. He regularly made sure that I would not have to go to medical appointments by myself and only after being assured that either Angela or Clint would be around, agreed not to make the hour ride into the city to be there.

But there are countless others.

Kevin, who left regular messages to see if I need company and to let me know that he is praying for me, Angus and Stefanie who left DVDs and baked goods, Laura, who sent gifts, Leilani who helped us make arrangements and dropped off a wonderful book, Leslee and the team at MTYP who called and brought gifts and many, many other people who left messages and emails showing their support and offering help in any way possible. Even my dentist called and said he would say a prayer for me. Angela and I found food items on our doorstep more than once.

I am sorry that I am not mentioning everyone by name but please know that every call, message and thought were very import to Angela and myself.

Those who know me know that I am an insecure person deep in my heart. I always wondered if people liked me and was often unsure how I came across socially. Cancer has taught me something that has given me deep contentment and peace:

My name is Olaf Pyttlik. My legacy is that I am truly loved by some very amazing people.

Thank you all for that.

Chemo Day 1

It is 9:30 PM now and I just woke up from 3 hour nap. I'm a bit groggy so if some of this writing is strange, I apologize in advance.

Today was interesting. At 8:00 AM Angela and I showed up at the Heartland fertility clinic to see if we could convince them to take a sperm deposit on such extreme short notice. One of the side effects of chemo is the possibility of sterilization, and even though Angela and I were not planning to have children, we thought that nobody knows anything about our future these days. Unfortunately they needed more time than one hour for blood test etc. and just couldn't 'squeeze' us in (pun intended). Ah well, we tried.

After that I started my very first chemo treatment at 9:30 AM. I spent most of the day in a very comfortable big reclining chair attached to an IV. I received multiple bags full of liquids, including pre-chemo medications like benadryl, salt water solutions to flush things out and the actual chemo drugs. There are 4 major chemo drug options and they gave me all 4 . Bring it on!

The treatment ended at 4:00 PM and I had a pretty good day of napping, watching a movie on my laptop and getting soup, cookies and orange juice served regularly. The whole thing felt like traveling first class on a plane. I admit it, it was fun.

When the nurse pointed out after a couple of hours that they would now administer the first chemo drug I expected some kind of a fanfare or magic reaction. I pictured Gollum with 'It burnzz, it burnzz!" but nothing out of the ordinary happened.

Angela picked me up and after getting some drugs at the drugstore and some Dairy Queen, we went home to have supper and to rest. Overall I feel(t) quite good. A little sleepy but otherwise well. I definitely braced myself for more. They gave me drugs to prevent me from getting nauseous and so far they seem to work.

So there is it: Today I got chemo. Weird. Like somebody saying 'today you gave birth' . The kind of experience I thought I would never have.

Angela

I just woke up at 4:30 AM and can't get back to sleep. My mouth is hurting a bit and I am excited about the treatment that starts in a few hours.

So I thought I'd spend the time sharing some thoughts about my wife Angela.

Once I was diagnosed with cancer it became almost immediately clear that a lot of my relationships would change. My relationship with Angela was no exception.

I alway thought that I had a good marriage. Angela and I are a couple now for about 15 years and we always said that we had it overall very easy. We got along well, fought seldom, had similar interest and views about the world, a great sex life, really enjoyed being together and often enjoyed being apart. I always knew that I loved her very much.

Once we heard about the initial diagnosis she was right there for me. I mean right there. Her own needs became secondary and her entire purpose over the last four weeks was to comfort me and make this experience as easy for me as possible. She spent the days trying to cheer me up or listening to my worries, making smoothies with cancer fighting whatnots, cooking meals, doing laundry and shopping and spent the nights with little sleep while she was worrying and praying for me while I slept. On top of that she also went to work when they weren't able to find a replacement for the occasional shift. Then she would check in with me regularly to make sure I'm o.k. My wife loves me.

I was ichatting with my mother a couple of days after they heard the news. It was clearly hard on my mom and we talked about the possibility of dying.

"Your job right now" my mother said "Is to make it through this for Angela's sake. That is your responsibility as her husband. If you love her you make sure to do everything you can to survive this. This is not all about you, it's also about Angela and other people that you love. Sometimes the dying is easier than being left behind." I don't think I will ever forget this conversation.

If I make it through this, I know that I will owe my life to my wife.

I love you, Ange

The Winner Is...

Angela and I visited her grandparents in Winkler yesterday evening and spend the night there in a hotel.

This morning I talked to David for a while. He and Donna spent a late night reviewing all kinds of data related to my two treatment options. In the end they concluded that there was no real conclusion in their mind of what would be better.

After I finished that conversation I found myself standing in Winkler looking at Angela's grandparent's condo. I called them and asked them if they would have time to pray with me. 'Of course' they said. And so we prayed for some divine guidance in this matter. I have to admit that praying with a faithful and traditional Mennonite couple has a soothing and comforting quality.

Returning home Angela and I discussed the scenarios over and over. At that point I think we both favored induction therapy (chemo first). We also tried to reach Dr. Maksymiak at the clinic but were told that we was really busy today. He was kind enough to call us at the end of his day and we had a chance to ask whatever questions were left in our minds. He pointed out that the tumor was quite big and that the initial chemo would hopefully shrink it enough to make the radiation more effective. Made sense. But more importantly he had me booked for my first chemo appointment tomorrow morning at 9:30. Action! I'll take it. The decision has been made. We would otherwise have to wait another week for the radiation preparations and timing was a deal breaker for me at this point.

Now we have to see if it was the right move. But I am excited to enter treatment.

Decisions

The weekend is over and I am anxious to call Cancer Care to make sure that whatever treatment is chosen will start this week. My pain in my mouth has been getting worse over the weekend and I am eager to attack the cancer.

After leaving some messages, Dr. Leylek called me back and invited us to meet with him early afternoon. He explained to us that there is a discussion around the clinic between using the traditional treatment of radiation and chemo right away versus a newer method that suggests 2 months of heavy chemo followed by radiation.

The latter method has shown some advantages in a recent study and is favored by Dr. Maksymiak, the medical oncologist. It is, however too new to draw definite conclusions and therefore Dr. Leylek would favor the traditional method. In the end he points out that the decision would have to be made by myself. Both approaches are respectable and have, in his opinion, equal chances of success.

Great! I fuss for days when I have to buy a new pair of pants. How am I going to decide what treatment to choose that could potentially decide if I live or die?

Angela passed on some research data to Donna and another colleague to see what their opinion in the matter might be.

I told Cancer Care that I would have a decision by tomorrow.

A friend of ours emailed us a prayer a week ago that said: "God, please give Angela and Olaf the wisdom to make the right decisions..."

God, please do.

The Teeth (Part II)

Today I visited Dr. Noriko Bloorberg again. Two of my fillings had to be replaced before treatment starts. Wasn't as bad as expected. I was out of there an hour and a half later.

She also took the time to explain the dental care regiment that I would have to adhere to during radiation. There was a lot of stuff to take in. I will try my best to remember all of it when the time comes.

Pre-Chemo Assessment

Today we met with Dr. Maksymiak at Cancer Care. He discussed the details of the upcoming chemotherapy treatment with me. He told me that chemo has different effects on different people, so we will have to see how my body will respond. He assured me that there are many good drugs that can minimize the often challenging side effects.

He also pointed out that the team at Cancer Care is enthusiastic to attempt to cure me. Definitely encouraging.

The bigger news to us was that, in his opinion, a two months chemo treatment before radiation could show better results than radiation and chemo together. He would have to discuss this with the other physicians before making a final recommendation. I told him that I would take their advice on the matter.

The only frustrating part was that we still don't have a definite start for the treatment. This thing keeps growing and I can't wait for somebody to do something.

Angela and I decide to call often starting Monday to 'encourage' a speedy decision.

The Teeth

Our friend Leilani called on Friday night and said that she has a friend who is a dentist; Her husband an oral surgeon. After hearing about my case they encouraged me to see them on Monday. They felt that a second opinion by an oral surgeon would be a good idea, plus he would be able to pull my teeth in such a manner that might increase the healing process (and me could put me under if required). I gratefully accepted the offer and visited Dr. Tim Blight in his office today. He took a 360˚ x-ray of my teeth and concluded that only two of the four teeth in question would have to be pulled. He confirmed his opinion with two colleagues from out of town and everyone agreed. Good news indeed.

Then he said "We can do that right now!" Half an hour later the teeth were out.

Stage one completed.

After that Tim drove me to his wife's office at Polo Park where I got my teeth cleaned. Dr. Noriko Boorberg also made a mold of my teeth that I would need during the radiation treatment to keep them moist.

After that she gave me a ride home. Incredible people!

The Diagnosis

Today Angela and I met with a team of physicians at Cancer Care Manitoba. They met in the morning for a 'case conference' where different experts in their respective fields (Radiation, Dentistry, Surgery, Chemo, etc) would discuss my case and offer a plan of attack.

Dr. Kerr, the ETN surgeon, explained the 'big picture' to us that afternoon:

A biopsy that was taken the previous week showed that I indeed have cancer in the base of the tongue. Unfortunately is advanced further than they would like it to be. At this point is would be labeled 'Stage 3' (Stage 1 the least, Stage 4 the most advanced diagnosis). For that reason they felt that removing the cancer surgically would not be a good option as I would be left without proper speaking or swallowing functions. Their recommendation was to try to eradicate the cancer with a combined treatment of 7 weeks-daily radiation (15 minutes each session) and chemotherapy.

After Angela asked what the assumed survival rate might be, he, after asking me if I would like to know, said 50% for three years. Strange to hear that.

That day I was also examined by the Cancer Care's dentist who explained to me that the blood supply in my jaw would very likely die out due to the strong radiation. This in itself might not be a long term problem, but if I should need to have a tooth pulled in 20 years from now my jaw might not be able to heal itself and get infected. If there are any teeth that might potentially proof problematic in the future, they would have to be pulled now as a precaution. She concluded that 4 of my right side back teeth should be pulled ASAP. Needless to say that came as a shock to me. They arranged an appointment with my dentist for Tuesday the 9th. I am definitely not looking forward to that one.

I was also fitted for a upper-body cast that would keep my upper torso completely still and in the exact same position during the radiation treatment. That way they would be able to aim the ray gun at the exact point that they choose. A large sheet of warm plastic was pulled over my face and through suction, took the shape of my chest and face. After that I was literally screwed to the table with it and they took a test scan. Cool.

It was explained to us that the preparations for the radiation treatment would take 14 days. So, now we would have to wait and hope that things would progress swiftly.