Monday, April 11, 2011

Enquiring Minds Want To Know

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The oncologist in Vancouver said I would know what my bone marrow biopsy results were in a week or two and I haven't had a bone marrow biopsy yet. That was exactly 2 weeks ago. What can I say, he gave bad info.


Because of that, after the first week I was very anxious to hear from someone and I started calling my family doctor and he was away sick. I left a voicemail at the oncologist's office in Vancouver whose assistant called back to say they faxed it to my doctor who was away sick. Then it was faxed to the doctor who found the tumor and he didn't bother calling me for 3 days. After me calling 4 times he finally called last Thursday as he was driving and had no info in front of him and said that I had only plasmacytoma. 


I realized a little later that I couldn't put much stock into his unprofessional reckless "diagnosis" because one needs to have a bone marrow biopsy to determine that it is only plasmacytoma. 


This afternoon I saw my family doctor who was generous with his time and went over what was faxed over by the oncologist. The fax had no certain diagnosis of plasmacytoma, rather it said they think I have it and I would need a biopsy to find that out if it's also multiple myeloma.


My GP said the reason why the biopsy wasn't done yesterday or sooner was because the nature of plasmacytoma and multiple myeloma is that its not really urgent as treatment within a month or two doesn't make a difference.  


Fortunately lots of people have cared to ask details. So it makes sense for me to give a few details from what I understand in a nut shell:
  • Plasmacytoma is a blood cancer, I have plasmacytoma. The tumor is about the size of a kiwi, it's malignant and was brought on by the plasmacytoma.
  • If I have multiple tumors then that means I have multiple myeloma.
  • Plasmacytoma can later become multiple myeloma.
  • There is no cure for multiple myeloma, just treatment.
My GP said today I could live from anywhere from a year to a decade and treatment progresses all the time and who knows it could be decades before I die.


My next meetings are on April 27th and after that there would be some type of timeline of when the biopsy is to see if I have multiple myeloma and begin treatment. The treatment would probably be radiation based mainly and all done in Victoria. 


Imagine answering and repeating all the above each and every time you talk to someone. It can wear thin. I am so very, very, very glad that anyone cares enough to ask, I really am. Please understand though if I referred you to my blog it's not that I'm being short with you, in fact it just means I'd rather have a conversation about Myrtle, the Royal wedding, the weather, politics, Oprah and Gayle (are they?), is Regis Philbin retiring too young?, trade waxing techniques, how amazing your dog or cat is, whether Donald Trump will really run for president, the benefits of jazzercising, hormone free meat, or if man really did walk on the moon (nope).


But if I bring up cancer you will know I'm needing to talk. If you read this and you bring it up then I know you need to talk about it and I'll be game. It's not a taboo topic around me (I am blogging about it after all), however I am well read and can talk and learn about other topics too.


Another fun topic is how I am doing physically:
  • sitting down hurts in about 20-30 minutes most of the time
  • standing for about 5 minutes I begin to ache and would rather sit
  • lying down on my back is uncomfortable pretty quick unless its a thick foamy or comfy couch
  • the tumor causes muscles spasms and I get a lot of twitches in my left leg
  • the side of my left thigh sometimes "falls asleep" and sometimes it feel like its on fire
  • my spine sometimes feels like its creaking like an old lady
  • when I turn my neck or whip my hair back and forth it can hurt and I can hear it crack like knuckles
I can and do:
  • walk without crutches, but can walk much further with them
  • get up and shower & shave, dress myself and am awake all day
  • empty the dishwasher, do laundry, get the mail
  • stand and hold Myrtle briefly or walk carefully around the room with her
I'm not on my death bed or anything. Well if I do die right here and now, it would be my death recliner. But I'm pretty sure I'm not on my death recliner either. 

My GP said it is best I stay on crutches, not to travel (fly, road trips, Tour de France, etc.) and to look at working maybe in maybe 5 months to a year.

Most importantly I feel more mentally alert then I have in the past month. My body is sure appreciating me eating healthier and ironically I am feeling healthier too.

I know that not everyone has something to say or knows what to say and that's okay. That said, those that have expressed something I greatly appreciate it. Anything from "I read your blog" to "We're thinking of you" helps me to stay focused and cheers me up to know you're in my corner. Every little bit is a huge help.

Yesterday the president of my church's primary dropped off a "heart attack", all the primary children made cards made of hearts, 42 in all. 
I miss being in primary, singing along to the songs, enjoying the enthusiasm of the children. I would bring Myrtle with me, it was special to share her with the kids. My class (8-9 yr olds) called her the "class baby". I know not all 42 know me more than being the bald guy, but they all seem to know Myrtle. 
"we want you alive not dead" Me too Jaden!
From my nephew Caeleb, 4yrs old
From my niece Kathryn, 11 yrs old
From my nephew Ethan, 9yrs old 
From my nephew Logan, 10 yrs old
Today Nathan, my cousin, came by to visit and he he said some things that were helpful. I was trying to explain how it has been helpful to have people praying for me. Years ago while a missionary in the Philippines he contracted malaria. Like me he felt the prayers of those praying for him and said that even though it was him with malaria it felt like almost he was watching himself having malaria as opposed to experiencing it. (Nathan did I regurgitate that okay?) That's how I feel too, well most of the time. Like him I also feel bad for those that are affected by my illness, much more than for myself.

In a helpful way it's healthy to hear others war stories, no one gets through life unscathed. I'm not the first nor the last to get cancer.  As Bono sings "It's not a hill, it's a mountain / As you start out the climb / Listen for me, I'll be shouting / We're gonna make it all the way to the light"

The right to be ridiculous is something I hold dear

12 comments:

  1. Ruban. My mum is a volunteer driver with the cancer society and I am home from work until September. I know we haven't seen each other in years but if you EVER need a ride to treatment, appointments please let me know and either she or I could take you. We'd be happy to help in any way.
    Carrie

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  2. Thank you for sharing Ruban. I love your sense of humor. You have brightened my day once again.

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  3. Faith: your adorable and I amen every word you said.
    Ruban: What IS your stance / opinion of the Royal Wedding? I was talking to a friend who said she was talking to someone (getting confused yet) who was complaining about the royal wedding being in the paper too much and my friend countered it by saying "well at least it's something positive and uplifting rather than what's normally in the paper". I used to be annoyed by it but I do agree with her statement. Thoughts?!

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  4. @Rachel Watters That's a great counter argument and a glass is half full view that I hope all or the majority of the tax payers who pay for that wedding agree with. I wish the two love birds a long and happy union.

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  5. Ruban, I ready every post and think about you and pray for you daily. I really would love to talk to you about hormone free meat and I think you are way of about the moonwalk (they so did!). Too bad you cant fly cuz we have a great couch here in the UK and our neighbourhood is having a HUGE block party for the Royal Wedding which will be epic and historic. The kids have even been sent home "Royal Wedding" homework. Besides, who doesn't love an extra day off :).

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  6. Well said my friend! Our prayers are sent your way. Thanks for your positivity (is that a word? well it is now). And can I say how cute it is that you adore Myrtle? And what a cutie patootie! Myrtle, not you! ;)

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  7. It was fun listening to you read the Heart Attacks to all the family. Primary kids are great. I too refer people to your blog, as people will often come to me and ask how you're doing. I find that odd, as they could just ask you, but reading your blog is definitely the easiest most informative way of giving people info. Thank you for taking the time to write out your thoughts and journey.

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  8. Since no on else is going go venture about cats... and since I have a few... I won't talk to you about the Royal wedding but cats... anytime. I am tired of my cats having kittens. They are getting fixed. Just think you could be someones pet and your medical procedures could be a lot worse. I also hate that they puke and eat grass. Cats do weird things. But you know, for some reason we seem to like them. I think it is because they purr and are friendly. So yeah... there is my rant about cats. Give me a call if you want to chat about serval cats from africa and how to breed savanahs. Fascinating. Oh and by the way... we are cheering for you and praying for you. All the best.

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  9. so seth heard about myrtle walking and got all competitive. not many steps but a lot of standing. he's pulling up from behind!! we love you!! have a great week and enjoy that beautiful wife and baby of yours!
    dana

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  10. I bet now that Myrtle is in "the house" we could possibly talk about her fav kiddie character...like right now Neil is watching the Cookie monster but his real fav is spiderman, followed closely by batman, and he is doing milestones too not crawling but kartwheels!

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  11. Hi Ruban, it's been a very long time since we've talked or seen each other...probably close to 17yrs? (Can we really have gotten older?) Anyway, I heard about what you and your family are faced with and I've been blog snooping to see how you are. I'm happy to see that your sense of humour has not been affected by this and you seem to have an amazing support group around you. I think of you and your family often and always send good engergy and healing thoughts through the universe. I'm in Edmonton now, so I'm hoping that the snow doesn't block my good vibes to BC. All the best, stay strong and we're thinking of you!

    Coral Larocque (Lownsbrough/Westle)

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  12. Ruban, It was so nice to see you last fall at Mike and Julianne's. I want you to know that we think about you and pray for you. We wish you and your beautiful family all the best. Keep your sense of humor! (after all it is your best attribute. he, he)

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