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Archive for November, 2008

Lumpy is as Lumpy Does

I’ve been doing well this week but I still have moments of fatigue when I have to stop and rest or I will fall over. However, the trend is up. I’m more into the swing of things at work. I think I’m motivated by the fact that December 8th will be my last day before nearly four weeks of vacation. This is the vacation that Cass and I did not take this summer while I was undergoing my chemotherapy. So, I have all the project tasks that I need to tie up as well as my year ending administration which needs to be completed before then. I’m not sure that I can remember that last time I had four weeks off together but it was a long time ago.

Our intentions are to spend about 2 weeks on the boat. We have a loose plan to head in the direction of the Sunshine Coast. Cassie’s manager has a summer home on Pender Harbour with deep water moorage which she has kindly let us use… if we can get there. At this time of year much depends on the weather. It could be benign or it could storm for days on end. If it storms we will find a sheltered place to tie up, read our books, make hot drinks and soup in the galley and watch the world go by. If it’s nice we’ll push on and get as far as we can before we need to turn around.

We are thinking about getting back to Victoria some time around December 23rd or 24th. Then we’ll load up the truck and drive out to Edmonton so we can visit with family. I’m having our truck serviced in anticipation of this trip right now. I just got the news that it needs a new water pump. DOH! However, that’s something I wouldn’t like to have fail on the trip. The expectation is that we’ll get back to Victoria sometime after New Years Day. Hopefully we’ll have a few days to hang out and get prepared for the New Year.

This weekend we’ll be seeing Lucy and Gary and their two boys for dinner tonight and Rob and Hilary for the Sidney Sailpast tomorrow. Rob and Hilary are decorating their power boat with lights. I’m interested to see what they have come up with this year. Last year Rob and I decorated Darwin’s Folly for the Oak Bay “Sea of Lights”. The new engine precludes us entering Darwin’s Folly this year. There is too much engine idling involved to be good for our new engine that is still in its break-in period.

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BITCH400

I’m always tired. I’m easily irritated and my patience for stupid, irrational people is thin (more so than usual). I have no desire to work and dread going in each morning.

I would really just like to putter around my house all day and bury my face in the neck of my wonderful, fuzzy pony. I would really like my headaches to go away and the nagging anxiety that tightens my chest and makes my heart race to fuck right off. I would like to be able to stop obsessively and compulsively monitoring Tom every waking minute.

(And this is me on happy pills! Can you imagine what I’d be like if I wasn’t?!)

My friend Frank thought of me when he saw this car on a recent trip to one of our customer sites in Germany. How apropos, dontcha think?

photo-0082

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I can’t take credit for the title of today’s post. It was the last line in someone’s hilarious rant about “5 Things I Liked About Having Cancer” and made me laugh my ass off. It seemed appropriate for today. (*UPDATE 09-03-10* The author has pulled that post because he is working on a book.  le sigh)

Given my current remission the posts specific to my struggle with Hodgkin’s disease will hopefully get more sporadic. I am going to keep writing on this weblog regularly but there is going to be more “just what’s going on with me” posts. I’m going to start a new category called “Life Goes On” for posts that don’t have anything to do with Hodgkin’s Lymphoma or my cancer treatments. Posts that do relate to Hodgkin’s and any changes to “what condition my condition is in” will be posted in “The Story So Far” as they have been all along.

Some subjects that might or might not get discussed from time to time in “Life Goes On”:

  • Sailboats are fun (cruising, racing, puttering, upgrading)
  • Sailboats are not fun (broken, scary weather, pain in the ass, expensive)
  • Friends and relations
  • Family history
  • Our horse
  • Our dog
  • Home maintenance
  • Thoughts on “Life, the Universe and Everything”

That’s definitely not an exhaustive list but at least it’s what comes to mind at the moment.

“Living under a cloud of black…utter a single word and watch the lightning strike…feel the roar of the thunder. Periods of calm are like tears dripping from a rainbow…and life goes on”.
Donna A. Favours

“The Answer to Life, the Universe, and Everything is requested of the supercomputer Deep Thought, specially built for this purpose. It takes Deep Thought 7½ million years to compute and check the answer, which turns out to be 42. Unfortunately, The Ultimate Question itself is unknown.”
A synopsis of Douglas Adams’ Hitchhiker’s Guide to the Galaxy.

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A Tale of Two Lumpies

Remission. That’s a word that every cancer patient wants to hear. It doesn’t necessarily mean that the cancer is gone. The doctors are too conservative to say that. All it means it that there is no evidence of active disease. But it’s a huge milestone. There are many cancer patients who never get here, including Hodgkin’s patients. For some reason the usual treatments are ineffective against some people’s disease. I know we were so happy that the lumps were decreasing in size after the first couple of weeks of chemotherapy. It was obvious that it was working.

At this point I want to reflect on the last six months of struggle with Hodgkin’s Disease. Obviously, there were many negative things about having and being treated for cancer. The fear of imminent death is a big one. I have to say that this fear only occupied me until I was diagnosed, so about three weeks. Once I knew it was Hodgkin’s Disease and that I had a good fighting chance, I didn’t worry about this as much.

Then there were all the side effects of the treatments: pain, fatigue, disorientation, changes in my appearance (like losing my hair), loss of my sex drive, the stupidity of “chemo-brain”, loss of appetite, inability to concentrate, etc., etc., etc. These were not fun. I would not recommend cancer treatment as a lifestyle choice. However, it’s amazing what you can cheerfully endure in order to save your life. As long as the treatments seemed to be working effectively against the cancer I was able to smile and take it on the chin. There is hope that much of these effects will get better now that treatment is complete.

But there’s much to be said on the positive side. My primary relationship with Cassie and my support from family and friends has been solid throughout my illness. I was still able to live and enjoy my life and the pleasures of feeling deeply about others and about the world. Therefore, the time spent being treated for cancer was worthwhile time. If I had my choice of having to go through it again or not, the answer, of course, would be “um, no thanks”. But, given that there was no alternative, it’s still a time of my life that was worth living and worth having. I hope I can keep that attitude through whatever else the universe and the “condition of my condition” has to throw my way. We’ll see.

“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way — in short, the period was so far like the present period, that some of its noisiest authorities insisted on its being received, for good or for evil, in the superlative degree of comparison only.”
First paragraph from Charles Dickens’ A Tale of Two Cities.

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I have my appointment with Dr. Sheila today. Cass comes with me. The doctor asks how we’re doing and then feels my neck, chest and abdomen. She listens to me with her stethoscope.

I will see Dr. Tanya, the radiation doctor, in January. Dr. Sheila will see us again in 3 or 4 months and may schedule a PET scan at that time.

But at this moment the decision is… Remission. No evidence of active disease. I will continue to have good days and bad days as I recover from the radiation treatment. But for now it looks like we’re winning and in a few years, with clean checks and no evidence of relapse we might have the audacity to consider that we have won.

When Dr. Sheila leaves the exam room we fall into each other’s arms and weep. It’s not the end… it never is. As Jim Morrison sang: “No one gets out of here alive”. But for me, that time is in the future. For now, the abyss fades. On with life.

“Most people think life sucks, and then you die. Not me. I beg to differ. I think life sucks, then you get cancer, then your dog dies, your wife leaves you, the cancer goes into remission, you get a new dog, you get remarried, you owe ten million dollars in medical bills but you work hard for thirty-five years and you pay it back and then — one day — you have a massive stroke, your whole right side is paralyzed, you have to limp along the streets and speak out of the left side of your mouth and drool but you go into rehabilitation and regain the power to walk and the power to talk and then — one day — you step off a curb at Sixty-seventh Street, and BANG you get hit by a city bus and then you die. Maybe.” Denis Leary

“Life only makes sense when you look at it backwards. Too bad you have to live it forwards.” from the movie Thirteen Conversations About One Thing.

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This last week has been an interesting experience. I’ve had some very good days and some bad days. On one of my good days I feel like I am done with the effects of my cancer treatments. I have energy, my thoughts are clear and I have positive emotions relating to the future. This is then followed by a day when I feel crappy and disoriented.

When I felt down every day I formed a layer of acceptance to that condition. I lowered the bar of what I expected of myself to a level that I thought was reasonable for my relatively stable, crappy condition. Now that I am vacillating between quite well and fairly crappy it’s hard to know where to set the bar of expectations. Last Sunday I was ready to hope that it was “over” and I was going to be “normal”. However, after the last few days, I have to accept that the fatigue and poor condition may continue sporadically for a longer period. Externally, Cassie assures me I am better: that I look better, am more engaged and engaging and spend more time being active. It’s peculiar that my perception hasn’t caught up with that yet. I think it’s because my expectations are impatiently setting the bar higher and higher, which leads to disappointment.

I can see how a relapse would be more emotionally difficult than the initial diagnosis. After the initial diagnosis you focus on what is to be done and accept that it will be difficult as you fight the cancer. With Hodgkin’s Lymphoma the statistics in favour of a cure are good so you take heart in that even though you feel poor. A relapse would compound that feeling with a despairing feeling of failure. It would seem that all the difficulties of the initial treatment had been for nothing.  The treatment of the relapse will be harsher than initial treatment. And, to top it all, the statistical probabilities of survival plummet. So, let’s hope that doesn’t happen.

I think the best way to handle a relapse would be the way General Teddy Roosevelt Jr. handled having his troops landed on Normandy beach. They were miles from where they were supposed to be without most of their supplies and no armoured support. His demoralized officers clamoured for orders as to what they should do as the defenders hammered them with deadly fire. He just told them, “We’re starting the war from here”. And they did. And so will I if it becomes necessary.

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Otis and I work from home. I work on my laptop and Otis works from his little dog bed.

I’m not as good as I was yesterday but I still manage to soldier on without having a nap. Yee haw.

I’m trying to arrange the repitch of the prop with this company that took over from Pacific Marine Diesel. It looks like we will try to get it done at 11am on December 9th. The tide is good. Hopefully the weather will cooperate. We will need to start from Oak Bay in the dark but I really want to get this done.

Cass is worried about her horse. She thought he might have been off when she rode him so she’s hoping he’s ok. Me too. There is nothing sadder than an injured horse… except perhaps its owners.

“On Monday mornings I am dedicated to the proposition that all men are created jerks.” H. Allen Smith

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