Monday, September 28, 2009

Depressed

I am depressed. There I said it. It's like a weight that is constantly pushing down on my shoulders and preventing me from enjoying a lot of aspects in life. Why am I like this? Hard to say. Obviously my physical discomfort doesn't help. Otherwise, I realize that I am thinking about cancer and my life with cancer all the time, and my mind is just cluttered with serious, negative, or often scary thoughts. This has been going on for about three weeks now and I find myself getting more and more paralyzed by it. Angela and I have talked a lot about it and her perspective is bang on in my opinion: As much as I was a positive individual in the beginning, by now I have already given up the fight. The frightening aspect of that is that she has no space to express her own fears or negative thoughts because we both would spiral downward together. I don't really know how and where to start in becoming a more positive and life-enjoying person again so I feel trapped for the moment. On Thursday I will go to see a counsellor from Psychosocial Oncology at CancerCare to see if some counseling might help.
For those of you praying for me, please add this to your list...

Saturday, September 26, 2009

The Poem

Yesterday Angela encouraged me to go for a run. I know that must sound crazy, but she succeeded in getting me to run the very short distance of 0.15 miles. That's about a minute. After that I was beat. We agreed that I would add 0.05 miles every day and in two weeks I would be able to run one full mile. So, as agreed I ran 0.2 miles today.

One of the most valued friendships that I found over that last couple of years is that with the co-author of our musical 'RICH', Vern Thiessen. Vern and I have only known each other for two years but have grown very close through our work together. He has taught me a lot about the industry, life, and friendship and I will be forever grateful for that. Vern lives in New York at the moment and he had a chance to come visit Winnipeg about three weeks ago while I was at my worst and in the hospital. I was barely able to speak to him and he left me with a late birthday gift; a poem that he wrote for me. Seeing that I was really sick, I waited until yesterday night to have it read to me by Angela. It took only a few lines before I was in tears. I asked Vern if I would be allowed to share it with all of you and here it is:

As a footnote I would like to point out that Pheidippides was the soldier that ran the distance from Marathon to Athens to announce the victory over the Persians. He died upon arriving after shouting out the message "We have won!".

MARATHON
(FOR OLAF)

You have run
my friend
from dusty Rome
to the deserts of Vegas
like ancient Pheidippides
from Marathon
you have run
to deliver the message in your heart:
"I am alive."

Twenty six miles
Pheidippides ran
his body battered
his stomach screaming
his mouth melting
every swallow
a nest of nails
every breath
begging him to stop.
Like you my friend
he hit his wall.
But when he saw the flag of Athens
flapping in the distance
he drew air deep into his lungs
and carried on.

You have felt the wall
my friend
at the Spanish Steps
or the Luxor Hotel.
You have seen the flag of the finish line
and like Pheidippides
you have done
what all great runners do
put one foot down
then another
till the message is delivered:
"I am alive."

But don't be mistaken
my friend
you are no Pheidippides.
Oh no.
Stronger than a soldier
you are
mightier than a myth
you could race him
a thousand times
over fennel fields
and the finish
you would never
let the bliss of your blood
burst your heart
as he did
you would never
lay down at the end and die
Oh no.
No.
You will see the flag of the Forks
and you will run to it.
You will cross over the line and shout
"I am alive."

And when you have showered
and rested
and drank your fill
we'll sit down
one more
you and I
to eat cake.

Friday, September 25, 2009

Good-Byes And Hellos

My mother left yesterday morning after living here with me (us) for 4 and a half weeks. She saw the worst of things and I assume that she will need some time to process everything she experienced here. But she found me roughly in the same shape that she left me and I guess that is good. Thank you for everything mom!
As a good news Angela came back yesterday as well. I am so very excited to have her back in my life after 10 days. This officially ends the nightmare that was my last two weeks. By the way, two weeks ago today was the last radiation session. I was told that the first 10 days to two weeks after would be the worst chapter of the treatment as all the additive effects would come to a peak. They were right. In retrospect I can say the the last couple of weeks was my own personal hell. I thought I was prepared but now I can say that I wasn't.
I am doing better now. I need less sleep during the day. I am actually up for a few hours and my mood is better as well. I still experience pain in my mouth but I am able to take small sips of liquid already. I am impatiently waiting for this to pass so I can eat and drink again. That is kind of the last reminder of my treatment side effects. I can feel a small difference in my recover almost every day now. My voice is also returning. A week ago I was only able to whisper but now I can speak almost normally.
Let's hope that things will move forward like this for the next few days.

Monday, September 21, 2009

Monday

Today I felt a bit stronger as I got up. Instead of staying in bed sleeping I decided to get up and deal with some unfinished emails. I also noticed that my room needs a bit of cleaning, I will do that after writing this entry. Maybe this is a sign that the days of depression are slowly passing. My last week was still pretty rough overall. If I'm lucky, this week will be better.
I have been able to keep all my food down. My biggest struggle is my mouth. There is still a lot of pain and I am still not able to swallow anything properly. My fantasies these days are along the lines of a big cold glass of Sprite that I could just down. Maybe one day.
Thank you everyone for regularly checking this blog even though the entries are sparse these days.

Thursday, September 17, 2009

So Far Away

I know it's been a while since my last post but here is the news for this week:
Angela has left on Monday to go for a 10 day work round in Thompson, Manitoba. That has been hard for both of us but we felt that I should be able take take care of myself with the help of my mother. The truth is that I miss her like crazy and that time slows down without her. Needless to say I am looking forward to next Thursday when she comes back home. Otherwise the recovery is moving forward with baby steps. I do feel better than last week at this time but the changes are small. I sleep for most of the day and when I am awake I am counting down the hours to my next sleep. My mother and I go for short walks every day and are otherwise enjoying our time together. Generally speaking I am still at the peak of the after effects of the treatment, and I am hoping that things will get better next week.
So, just hanging in there for now.

Saturday, September 12, 2009

It's A Wrap!

Yesterday was my last day of radiation. I had two sessions, one in the morning one in he afternoon. That's it, I'm done. No more Chemo, no more radiation. Now my beaten up body can start to recover. I have been spending most of my last few days in bed, either sleeping or taking it easy. Eating is still a bit of hit and miss. Sometimes the food says down, sometimes I throw up a lot. So, it's a bit of a mixed bag between doing well and doing lousy these days. Now I am impatiently waiting to get better. Some people say that the coming week will still worsen my condition a bit due to the additive effects of the radiation. I guess we'll see.

Thursday, September 10, 2009

Home

After having spent a rather miserable time in the hospital for the most of last week (thank you Angela and Clint for the blog entries) I was finally released home of Tuesday. It was good to be back. Unfortunately things did not improve much. I was being fed through my tube but my stomach did not want t keep much of the food. I have been throwing up a lot over the last couple of days. I just feel unwell overall. I do have occasional outbreaks of sweat and feel tired and weak most of the time. My weight has dropped to 176 as of this morning which is about 30 lbs less than two weeks ago.

The good news: Tomorrow afternoon will be my very last session of radiation.

Sunday, September 6, 2009

The spirit cannot endure the body when overfed, but, if underfed, the body cannot endure the spirit. ~St Frances de Sales

One more entry from Angela. Hopefully, this is the last blog post I will have to make on Olaf's behalf. Not only has he lacked internet access the last few days, but even more so the energy/desire to write or read his blog - it makes him too sad. While Olaf is a guy with many emotions and generally not afraid to express them, he usually has them under reasonable control. Not so last night.

The PEG was not usable for the first 48 hours, but he needed to stay in hospital for IV antibiotics. After 4 days in hospital, he was feeling very trapped, so with much cajoling we convinced them to let him go home for the night on Saturday. As a physician, I would be able to administer his IV medications myself, so armed with a bucket of filled syringes, we left the hospital on a night pass.

All afternoon he had been shivering uncontrollably - possibly from hunger, or possibly from going stir-crazy on the ward. I dropped him off at home with his mother, and met up with friends for Dim Sum (dining out has become a rarity for me and I was quite excited). Near the end of dinner I got a call from Olaf asking me to come home right away, with little explanation. I found him in the throws of a panic attack, complete with shaking, uncontrollable crying, and hyperventilating. This was something I'd never seen him do. He's mentioned frequently how happy he is NOT to have phobias of small spaces, needles, etc. Yet the last couple of days, he had become increasingly anxious about getting put into the mask, and had even asked his doctor for some sedatives before his most recent radiation treatment. Fortunately, we still had some on hand last night. I gave him one, and together with some reassurance and slow breathing, he settled down. But he was a beaten man, with no physical or emotional reserve with which to cope.

In the morning things seemed brighter (as they so often do) and we went back to then hospital to finally begin tube feeds. While we waited for the pump to arrive, they squirted an ounce of liquid food into the tube. That was vomited up shortly thereafter (apparently a little too much for his stomach to handle). However, once the pump was set up, he tolerated the rather meager 2 tablespoons per hour it feeds him, with minimal vomiting. Whether it's the 300 or so calories he received today, or just the psychological impact of knowing he was getting nutrition, he looked and felt much better today.

The current plan is to stay in hospital at the Health Sciences Centre until Tuesday so they can monitor any electrolyte changes from refeeding. He'll try to get passes for a few hours out once in a while just to maintain his sanity, and hopefully go home on Tuesday morning. Keep your fingers crossed for a new blog update then from a happier and less hungry Olaf!

Friday, September 4, 2009

More hospital than Olaf can stomach... (Clint's Version)

It appears that Olaf will be stuck in the hospital for at least two days. This is due to the fact that he just got his stomach feeding tube installed this morning, and thankfully not due to any other new nasty side effect of his treatment.

I had the pleasure of getting to visit with him a bit this afternoon. I am always sort of stuck between wanting to visit Olaf and worrying about bothering him if he is resting, sleeping, or generally feeling too terrible to want to see anyone (last night was unfortunately one of those cases.. a really terrible night I am told). I miss seeing him regularly as we have essentially spent every working day together here at the studio over the last decade. When I did get to see him today, he was looking tired and thin, but it made me feel good just to hang out with him for an hour or so, and I hope he felt the same way. I mentioned to him that it is a pity that the hospital has no internet he can use as several people have wondered when a new blog update might happen, and how he is doing. 'Well, do an entry for me.' he replied.

So here is a temporary update from my perspective. As indicated above, Olaf has finally got his feeding tube installed which should remedy the fact that he has not been able to eat for the last week or so. Unfortunately there appear to be wide variety of complications that can occur when someone who has not eaten for 8 or 9 days starts injecting food directly into their stomach, hence he is not really allowed to 'eat' with it until late in the weekend, and has been told that he needs to stay in the hospital for another 48 hours or more ( ...there were big discussions between Olaf and the nursing staff on this point). The installation of the feeding tube has really buoyed his spirits as it solves a big problem that has been getting him down (starvation) and seems to point to a time when the medical procedures will start remedying things instead of trying to just kill the cancer by almost killing him. The bad is that Olaf is not terribly happy about being stuck in the hospital, does not appreciate the 'company' of the other people in his room (see Ange's last post). However, the net effect seems to be positivish.

We talked quite a bit about how after today there will only be 5 radiation treatments left, and all the treatment will end next Friday. I got the impression from him that for the first time in two weeks this process was finally starting to feel finite.

Wednesday, September 2, 2009

A New Low: Angela's Version



Olaf's hoarseness has mandated that I frequently speak for him these days, and tonight that carries on into the blog. Tuesday we met with the surgeon regarding the feeding tube, or PEG (percutaneous endoscopic gastrostomy). It's been roughly a week since Olaf has received nutrition or calories of any sort, and he is weak and hungry. The surgeon felt the fastest way to get it done would be to admit him to hospital so he could get squeezed in if any openings appeared. Unfortunately, there was no PEG forthcoming today, but we have been reassured it will likely happen tomorrow.

So for now, Olaf languishes in a hospital bed next to someone with a tracheostomy in need of frequent suctioning on one side, and someone who likes to watch Dr. Phil on full volume on the other side. He's been deemed "cytotoxic" because of the chemotherapy, so all body fluids have to segregated in a special bucket.

The novelty of the automatic bed wore off after 5 minutes (o.k., maybe 10), and now the minutes go by slowly; he's too weak and nauseous to do much, but not able to sleep. His third (and last) round of chemo on Tuesday has hit him quite hard. On the upside, he is receiving fluids around the clock and nausea medication through the IV instead of by mouth. But starvation, nausea, pain, and the general surroundings have all contributed to very low spirits. This is his lowest mood yet, and he is also anxious about his physical health.

With the chemotherapy finished, and only 8 radiation treatments left, hopefully he will see the light at the end of the tunnel once he gets a little food into his stomach.