Posted in The story so far, tagged life, lymphoma on September 29, 2008|
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We see Al, Kay and James on Friday for dinner. They make us a wonderful steak dinner and we enjoy seeing how the three of them are becoming a family and adjusting to each other.
Saturday we sleep in. Ah, bliss. I have been having some trouble with my throat. It feels uncomfortable and makes me want to swallow or flex it. This is making both Cass and I paranoid because the throat is one of the places that Hodgkin’s can manifest. We’re both freaking out about the possibility of a relapse. However, this discomfort is probably just a combination of stress, hay fever, a mild cold and some weird sensations that I still feel due to nerve damage from my biopsy operation. I will have the radiation oncologist check this out if it still persists when I see her next week.
We have Dim Sum for brunch followed by coffee at Bean Around the World. Cass isn’t feeling too hot so we head home for a nap. Illness aside, Alli needs attention so we then go out to the barn to see him. Thankfully, the weather is wonderful; soft and fragrant of hay and earth. Cassie rides Alli while Otis and I go for a walk. Afterwards, we have some throat-soothing soup at Pho Vy and call it a night.
Sunday we sleep in. Then it’s off for coffee to Pure Vanilla and then to the yacht club where we exercise Otis. Lunch at the yacht club is followed by shopping at Home Depot and Canadian Tire. Home for a nap. Then to the barn to visit the horse. And home for dinner. Cassie makes great pizza!
It’s a life. Truly. And a wonderful one.
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Posted in Cassie's quips, tagged emotions, support on September 27, 2008|
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Here are some sad posts I’ve seen on my cancer forums.
The first one is from a person who is looking into private health insurance in the US…
Does anyone on here have experience getting individual health insurance?
I just learned last night that my company is going bankrupt, and since the company will cease to exist, I would not be qualified for COBRA.
I called my health insurance company this morning, and they said for individual health insurance, I would most likely be denied due to my preexisting condition of lymphoma. I had thought that if I have had continual health insurance coverage, my lymphoma would not be considered as a preexisting condition. Or is that just for group plans?
What other options do I have?
This is a question about alternative treatments…
I have a dear friend who is trying to help me with my treatment options, my friend doesn’t believe in chemo and is really concerned for me, I have been searching the net these past months for answers and I am convinced Chemo is my only hope, how am I to explain this to my concerned friend as he sent me an email [with an article] saying Lymphoma is primarily a fermentation/yeast/fungal/parasite problem. Has anyone heard of this before?
And this is a portion of one of the answers to it…
Only today I received a call from a lady with breast cancer … to ask for help. What I found deeply troubling was her admission that she had decided against regular medicine to try alternatives and homeopathy. She realized now that that was a terrible mistake because the cancer had spread and was throughout her body. She said that she was sure she was going to die.
Pretty sad, eh?
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Since chemotherapy I have noticed one peculiar side effect. Before chemo I would become fatigued gradually. I would be a little tired, a little more tired, then more tired followed by very tired in a progression over a period of hours. Now, I go from OK to suddenly very tired. I have little warning. It can hit while I am out for a walk or in a meeting at work or driving the truck. Suddenly I will have an urgent desire to lie down. My brain stops functioning. I have hit “The Wall”.
If I push it further after I have hit “The Wall” I am made sorry for my efforts. Not only will I be wiped out for the rest of the day, I will be in sad shape the next day. It doesn’t help that I’m impatient to get back to my pre-chemo endurance level. “The Wall” doesn’t care. I have to stop, sit or lie down and stop thinking. Operating heavy equipment is right out. My appearance as the returning champion on Jeopardy will have to wait. It’s time for the lumpy cancer boy’s nap.
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This morning I have the CT scan that will assist with targeting the radiation. I lie on the scan table and the technicians place tapes with wire in it over my biopsy scar, on each side of my torso and on my chest. I then have to lie for 5 minutes in an uncomfortable position with my neck hyperextended while they do the scan. Finally, the techs come back in and the tape is removed. I have a small blue tattoo done over each area where the wire was. This will help them relate my body with the reference points on the CT scan. I ask for an anchor but I’m refused. I’m sure this joke is way overused for these technicians.
It’s over in about 20 minutes total. The next step in cancer treatment will be my first actual radiation treatment on October 2nd. Zap!
Here’s the tattoo I wanted:
Sadly, here’s what I got. It’s the tiny dot in the middle of the pink cross. I have 3 more of these tiny things.
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Posted in The story so far, tagged emotions, life, lymphoma on September 23, 2008|
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When you are first told that you have cancer, it is an emergency. Your heart stops beating for a second and then your guts writhe. Calendars are cleared. Events are canceled. Everything is put on hold. Loved ones need sedatives… so do you! Your event horizon shrinks from sometime in the middle of the century to sometime after this Saturday. You believe that what had been your carefree life is now gone and that the rest of your existence on earth will be coloured by your struggle with cancer. Your past flashes before your eyes. Has your life been worthwhile? Do you have regrets? Are there things that must be finished before the abyss swallows you whole?
This aura pervades while you receive bad news which becomes worse news. It seems like you’re falling down a staircase without end. You wonder how bad it can get and how low you can go. Adrenaline flows all the time. You are on a quest or a grand crusade to survive, or to at least lessen the impact of side effects. You and your family struggle to make decisions that will lead to a longer life or just less pain.
You want to trust your doctors but you second-guess them all the time because so much is at stake. The internet leers at you with divergent opinions from people who are not you and who are not doctors. They would seem to say that your doctors are incompetents who are intent on murder because their opinion is that you are not getting the right treatment. You need to keep telling yourself that your doctors have spent years in school, have years of experience and have actually examined YOU, looked at YOUR test results, read YOUR CT scans, understand YOUR response to treatments, fondled YOUR particular lumps and have looked into YOUR eyes to see how you are doing.
However, this state of emergency can’t be maintained. Since I am not in constant pain and things have stabilized for a time, I have found myself lapsing back into… normalacy? So I have cancer. Whatever. I have things to do and a life to lead. I have work to do and people to take care of. Dishes must be washed. Dogs must be walked. Life continues with or without cancer. The lumps become part of the everyday. I find that hours go by without thinking about the lumps.
I still haven’t found that my mind’s event horizon has moved out much past this coming New Years. However, it’s further out than this Saturday night. That’s a start.
“Dr. Weir: I created the Event Horizon to reach the stars, but she’s gone much, much farther than that. She tore a hole in our universe, a gateway to another dimension. A dimension of pure chaos. Pure… evil. When she crossed over, she was just a ship. But when she came back… she was alive! Look at her, Miller. Isn’t she beautiful?
Miller: Your “beautiful” ship killed its crew, Doctor.
Dr. Weir: Well… now she has another crew. Now she has us.” Quotation from the film Event Horizon.
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Posted in Cassie's quips, tagged emotions, life, support on September 22, 2008|
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Our medical system has been something that I’ve always taken for granted. When I’m sick, I go to the doctor and get treated. Sometimes I need a prescription, which is covered by my private insurance through work. Sometimes I need further diagnostic procedures and an appointment is automatically booked. Sometimes I may have to wait a little while but that’s usually OK. It’s that simple.
Tom’s care has been stellar. His diagnosis was made within two weeks of when we first discovered the lump, and treatment started quickly and has been managed well. We haven’t had to make decisions based on money or a lack of treatment available in our province.
Everyday we get closer to finding a way to tame this beast so that no person ever needs to suffer again. Medicine is advancing at an extraordinary rate. If Tom had been diagnosed 10 years ago, he probably would have experienced a second cancer due to the chemo and radiation. Now, it’s a less than 1% chance. When my grandmother had mantle cell lymphoma in 2000, the palliative radiation gave her third-degree burns over her neck and chest, and it was so imprecise that it killed her salivary glands, taste, and smell, and affected her vision. Now, they can bend and shape radiation, and the newer linear accelerators probably would have made her last few years of life something she could enjoy instead of an agonizing misery.
However, there’s only so much money to go around and so there are things that our government and private insurance cannot cover. Fair enough. This is where private donations come in.
Over the weekend, one of our close family members made a substantial donation to BC Cancer’s Vancouver Island Cancer Centre. Thank you for helping Tom and so many people like him.
If you would like to do something similar, you can donate here.
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I’ve got more treatment scheduled. This Tuesday I’ll have another CT scan in the radiation clinic. This will not be for diagnostic purposes like the CT scans I’ve had already. Everyone knows I have Hodgkin’s. This CT scan will accurately locate the areas that are to be radiated and the structures that are close to the radiation zone. Then there will be nine days while Dr. Laser and the rest of the radiation therapy team works out my plan. My first treatment will be on the morning of October 2nd.
I have a call in to BCCA because this schedule isn’t what I expected based on my consult with the doctor. She had said that they liked to wait two months between the last chemotherapy treatment and the first radiation treatment. My last chemo was on August 20th which makes October 2nd exactly 6 weeks so I wonder what’s up. It could be that the two months is approximate but I want to be sure.
The weather is looking like fall this morning. It’s overcast and cool. We’re starting out the day with the whole family (man, woman, dog, possibly dead lumps) in bed. We’ll go for Dim Sum for brunch, possibly followed by a visit with Kay and baby James. In the afternoon we’re going to a pool party but the weather isn’t motivational for getting into a swim suit. Otis has a play date with Frankie, the dog of the house at the pool party. We’ll see if they get along.
Tomorrow we are helping with a work party at the horse barn, weather permitting. The meadows need to be mowed before the rainy weather arrives so that the grass will grow in strong. I changed the oil in our lawnmower yesterday in anticipation of some long mowing action tomorrow. However, the look of the sky is making me wonder if it’s going to rain and the mowing party will need to be postponed.
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