Tuesday, May 31, 2011

Soldiering On

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Tired, very tired. Each appointment I'm asked how I'm feeling and today I said "I just feel ...lazy". Hannah was very clear at helping me understand that being tired is to be expected. Sleeping 12 hours and taking naps are helpful for my body to heal; as my body is expending its energy resources to heal. Today's treatment certainly is being felt in discomfort and low energy.

I decided that if we're driving all the way downtown as a family everyday to help me live so we can be a family, why not do a family activity afterwards if we're able to. So I packed some grain for us to feed the ducks. Myrtle loved it. I loved being a family.
We took a different route home as there was a package waiting for me at the Greyhound terminal. Passing Planet Organic grocery I decided to pop in to pick up a few items. The cashier girls were asking questions why I was on crutches, which lead to them asking how I found out I had cancer. They would have no way of knowing how tired I was and wanting to go as anonymously as I came in. So tired I kept on forgetting my debit cards pin and they just kept talking. Girls shouldn't be chatting men with shaved heads and tattoos. Then I hear "Hi Ruban." Finally someone I would like to talk about how life is going to but, my body was saying "Leave! Go! And sit down." I hope my friend understands I wasn't up for chatting.
Faith went into to Greyhound to pick up the package, this time I stayed in the car with Myrtle. It was from my sister-in-law Colleen.

Colleen and I have been friends since I was 12 years old and she was 15 dating my brother Jason. One day it was just the two of us at home and for some reason we went through all the spices and smelled them; we've been friends ever since. Later Colleen rented a room at our home, there we planted a garden. Other fond memories have been seeing concerts and the time I gave her a bloody nose. Maybe about 1993 there was a Sting music video playing, Fields of Gold, and I wanted to change the channel and she did not. We wrestled and somehow I fell on her head giving Colleen her first bleeding nose.

Faith and I thought that maybe Colleen mailed something for Myrtle or stuff we might have left behind when we were staying at their place when I was seeing an oncologist in Vancouver.

Opening the package when I got home and found a letter from Colleen. I scanned it, you should be able to double click on it below to get to be big enough to read.
Inside the box was a quilt she made for me. It's perfect.

Honestly I wept, I was and am over joyed. I understand it was a gift truly made with love for her brother in need. I'm sure no one more than Colleen and Jason want me to get better, they are after all have agreed to raise Myrtle should Faith and I pass away.  Clearly we made a fine choice for Myrtle.

I grew up with blankets and quilts my Grandma Myrtle made and afghan's my Grandma Hazel made. So I was honoured to remove the Made In China blanket on our bed with quilt that was made with love in Canada for me.
A quilt is something that helps transform a house into a home and there's no such thing as too many. Maybe I got to start quilting and knitting. While blogging Myrtle woke from a nap and I showed her the quilt. She loved it too, pointing at all the squares and saying "Oh!"
My exhaustion coming home was replaced with new hope and courage to soldier on. Thank you Colleen.

Lifes a Trip. 

For you Colleen...

Wednesday, May 25, 2011

Ruban You Look Radiant!

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Each day, Monday thru Friday (except June 13th), I will be driving to Royal Jubilee Hospital's BC Cancer Agency building for my radiation treatment. This afternoon I finished my second treatment and I have eighteen more to go, ending on June 21st.

Arriving yesterday, I met with a radiation therapist who went over what to expect and what to do. For those that are interested I took some pictures of the sheet she gave me. The squiggly square on the drawing below shows where the tumor is and where the radiation is being directed.

After we went over the sheet and my questions, I went to get my first treatment. As I mentioned in my last post, I was tattooed small markers on my hips and pelvis. They use those markers to position my body on the radiation gurney thing that they called a "couch" (it resembles in no way a couch, more like a big cutting board). It's rather humiliating to lie there with my pants pulled down, with a strategically placed thin linen square the size of a doily on top. This part is incredibly out of my comfort zone. When I was tattooed and yesterday they had the cloth right there ready to go no questions asked. Today it was asked if I wanted it, I casually answered "Yeah..." as if I it was an option. I'm not sure who asked, but I'm sure she was just being polite.
Yesterday and today Myrtle loved the hospital hallways. I was told after both treatments that my daughter was entertaining everyone outside. When I went out of the radiation room I saw Myrtle running around, waving at people and Faith trying catch her. Today Myrtle was true to form, she did not want to be slowed down, as she had places to go and people to wave and smile at. I think she's a welcomed distraction for everyone. Myrtle was so sad to go today and cried when picked up saying "Muh-uuuummmm, Daaaaad! I just got here! Why are you taking me away from my friends?!"
Faith trying to catch Myrtle.
The actual radiation treatment is painless, I feel nothing at the time. Yesterday on the way home I felt like vomiting. Essentially I was told I would feel worse, a lot worse before I get better. The tumor will become more swollen and uncomfortable. Each dose of radiation builds on the last and by day ten my energy levels will more sloth like. For the last while I've trying to determine if I'm feeling cancer fatigue or just lazy and sometimes when writing or reading it feels like I'm getting stoohpidher. Fortunately other times I feel great and more mentally sharp. 

This physical and mental roller coaster also has my emotions on as a passenger, since my view on life has improved. Some things I have infinite patience for while others things I now have less patience for. For example the parking lot was full before today's treatment, we waited several minutes for some very senior geriatric citizens to back out their large truck as they finally drove away another car swooped in and took "our" parking spot. Pre-cancer Ruban would've given the driver a scowl, today I sighed and said "She probably didn't see us over the truck." I seem to have less patience when people (who for whatever seemingly valid and justified reason) have a hard time appreciating the juice of life, family time and or who just say no to everything. So sad. 

What could be more important then family and enjoying life? Pardon me? What's that you say? Nothing? Hmm. Why are we on this earth? To have joy?! Huh, something, a little voice within tells me you are right. Thank you for your insights, but this is my blog and I gotta go eat dinner.

Tuesday, May 24, 2011

My American Eagle Tattoo

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I've been avoiding blogging and answering emails since my diagnosis. Truthfully it would be nice if there was a neat answer to why. I could some up in a clever little sentence, but none comes to mind. We all know that life and emotions can be complex, so anything I write now might not do justice to how I feel or felt.

The course of our lives have several moment of truths that we grapple with and try to comprehend. After THE CALL one of the greatest blessings was to have an out pouring of love, support and prayers and fasting. Old friends emailed, called, and dropped by. Some family bonds were renewed and strengthened. People I don't know super well sent over cards, notes, meals, even a book and something beautiful to hang on my wall.
I tried to get Myrtle to pose with it: REBALKIN families are forever
The oddest part of it all wasn't who reached out, but who didn't. Of course I know that no one owes me anything, people have their own life, problems, etc.. There isn't any grudge within me against anyone, but there has been some sadness when people geographically close have been emotionally far away. I didn't expect anything, but also didn't anticipate nothing. Sometimes people just don't what to say or do, and perhaps I simply wasn't as close to some people as I thought I was.

You and I cannot control the intentions or behavior of other people. However, we do determine how we will act. ...we can choose not to be offended. ~ D. A. Bednar

Does this sound too "woe is me"? I hope not. That's just life, people can disappoint and it's not even their "fault".  How I have felt isn't unique, we all have wondered why so and so didn't call to congratulate me on my Nobel Peace Prize, comment on my weight loss, yada, yada, yada. I'm very certain that I have unintentionally neglected, offended and put off more people then you can shake a stick at.

Wrapping my mind around my relationship with the world at large hasn't provided a dry spell in writing, rather a pause. I knew that with my diagnosis then prognosis I was being given the gift of life, something that I took for granted before.  This new lease on life, a second chance had me questioning every aspect of my life.

I have questioned and reevaluated everything. My faith. Where I want to live. My role as a father. Being a husband. Academic pursuits. Music I listen to. Career path. Who I spend time with. What has true value and what has none.

THE CALL addressed my fear of death. Hesitantly I can say I don't fear it anymore, and regrettably I believe it was a fear because I didn't truly embrace life before - I was just going through the motions.

Now my biggest fear is that I become complacent and fall back into the rut that I didn't know I was in.

So now that's off my chest, what have I been up to? Well for starters I got inked. Yup, that's right I have tattoo's. I explained to my mom over dinner that sometimes when going through a life altering chapter one needs something to remember it by. I had fun messing with her, as I'm not a tattooed sorta guy.

Two weeks ago I had a CT Scan to map out where to do the radiation. The "map" was marked by tattooing three small dots on my hips and somewhere below my belly button. I asked for an American eagle but this is what they came up with...
In the center of the red X by my freckle is a small black dot, my tat.  Left hip.

The American Eagle. My right hip.
This will be the only time you'll see my tattoos, well unless I have very short shorts on or am in a tiny Speedo®.

Today I begin my radiation at 8:30am. I will blog about it. Certainly I'm a tad antsy. Last night it was near impossible to fall asleep and I welcomed and relished in Myrtle waking up at 11pm, I needed the company.

I'm only on 3 hours of sleep, so hopefully my mind will allow my body to nap later today.

Myrtle saying hello while I'm doing this blog. She said to ask you to pray for her Daddy today.

Friday, May 6, 2011

Bone Marrow Biopsy Test Results!

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At 8:47am this morning Dr. MacPherson, the drug therapy oncologist I met with last week called to give me the results of my bone marrow biopsy. I quickly put him on speaker phone and called Faith over and we listened as he told us that there was no sign of multiple myeloma, only plasmacytoma.

A little refresher course is that I was told I had at least plasmacytoma (blood cancer with one tumor), plasmacytoma untreated becomes multiple myeloma. A bone marrow biopsy confirms where the cancer is at whether it's only plasmacytoma or multiple myeloma. There is no cure for multiple myeloma, just treatment till one dies. Plasmacytoma on the other hand can be cured, which is GREAT news for my little family!

What treatment I'll get and how long it will take - all those details will emerge over the next week. The results of my 24 hour urine sample and blood sample have yet to come in, when it does it won't change the diagnosis; it's my understanding that it will show what stage the plasmacytoma is at (or something along those lines).

I have a million thoughts and feelings racing through my head. In the last 40 minutes I have laughed and cried. Thank you so very much for all the prayers, care, support - it has made a world of difference.

Wednesday, May 4, 2011

The 9th Caller!

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Whenever I wake to Myrtle crying and her momma is up with her, I swear she's saying "Daaa Daaaaa waaa waaake up!" That is how today started. Faith said Myrtle was crying because she slipped in the tub, but I knew better - it was time for Dadda to wake up. 

Before leaving I made sure I had everything for our trip and Faith made sure Myrtle had everything to hold the fort down as we left her behind with her Great Grandma Hazel, Aunties Joan, Lois and Ennyd. It was hard to leave Myrtle behind as she brings me so much joy, but today's errand was different and it was best she stayed back. Besides, Myrtle was in very good capable loving hands. 

First order of business was dropping off 24 hours of "business" at the lab. Walking from the fridge to the living room with a container holding 24 hours of my urine with three aunts and my grandma near by was personally awkward. I don't know if any noticed and doubt any would care; still odd though. Today I was the first moment I was glad to be on crutches, as it meant Faith carried my day's supply to the lab for me.

After the lab deposit, we went to Victoria General Hospital to have my skeletal survey (head to toe x-ray) done. The head medical imaging technicians's name was Ruby and our name similarities was the only highlight of my 20 minute x-ray. 
Faith waiting outside the x-ray room.
Our last and most important stop was at the Royal Jubilee Hospital. The help desk directed us to the wrong end of the hospital and the wrong floor. We then learned where to go and quickly made our way to the 5th floor and were whisked away by someone wearing a smock. "Bone marrow biopsy? This way" he said without even asking who we were. Part of me wasn't even sure if he was a hospital worker (how hard is it to get a smock in a hospital?), but soon it was established that he was legit and we were where we needed to be.

The doctor came in and she was very pleasant like our nurse. Upon being asked if I knew why I was getting the bone marrow biopsy I replied with "I won a radio contest, I was the ninth caller." That broke any ice and it was a friendly atmosphere with lots of joking from all four of us. 

Laying on my side in a fetal like position I was prepped for the biopsy. A pinkish solution was applied then freezing needles were poked in. The freezing fluid had a bee-sting type of sensation. Soon my back right upper hip was frozen and the biopsy procedure begun.

Faith had asked if she could take pictures. Soon after it begun I hear "Faith, Faith, Faith" and saw Faith in the corner of my eye as she fell forward on the the hospital bed fainting. I tried not to laugh, but she was safe and well, it was funny.  Faith sat down and the nurse took over her photographer duties.
This photo was taken by Faith
This was taken by the nurse.
If you grab your bottom teeth and aggressively move your jaw back and forth that is a little of what my hip felt like as the biopsy needle worked its way into my hip bone. Then the marrow was sucked out. After it was done they asked me to describe how it felt. One patient, they said, answered by saying "it felt just wrong." It certainly did hurt and is quite tender now. I had no answer for them then, but hours later and napping on their question I would say it was very disagreeable. 
All done.
To the right is my bone marrow and the right is a core sample of my hip bone.
My bone marrow. 
All the red is yours truly's bone marrow.
While laying on the bed recouping, different nurses came in to take some blood samples and before I knew it we were home in 3.5 hours. Walking up the stairs and seeing Myrtle content on my aunts lap was fantastic. Soon after, I was napping and now I'm blogging. So you are about as caught up as one could be.
At least five viles of blood taken here. 
The doctor said that the bone marrow of multiple myeloma tends to be cloudy and mine wasn't, so that could be a sign I have plasmacytoma. They will know the results for sure in about two days and I'll know within ten days. 

Tuesday, May 3, 2011

Living Like Howard Hughes

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The night before last I woke up very nauseated, I have had the flu before - this was not the flu. However the only way to describe it was I had flu-like symptoms, clammy cold sweats, burning hot and dizzy.  Though I have never done it, I was sure I was dying. *Spoiler Alert* I did not die, was only mostly dead and went back to bed and woke up several hours later. All day I recouped enough to go out and vote, barely.
There's a few things I've learned from that and feel that it would be a waste to not share, no need to thank me in person, song or fable, just pass it on:
  • Staying in your pj's all day is more enjoyable when by choice.
  • There are no fun cancerous big tumors, just better places to have one than on your hip.
  • Crutches don't tickle, but do leave large bruises. 
  • All day on Facebook isn't the same as socializing in real life.
Another thing I'm still learning is optimism really does help. Laughing at myself or my situation has been more helpful then anything, because when I haven't nothing has been more detrimental.  I wish I could say that praying, happy thoughts and smiles are a super easy and a natural thing, perhaps one day it will be, for now it's a choice. A choice I choose over and over again because life is better that way.

Optimism is the faith that leads to achievement. 
Nothing can be done without hope and confidence.
~Helen Keller

Yesterday physically sucked (can you say "suck" on the internet?) and emotionally, well, I've had better moments. As we all know, no matter how dark the night gets the suns always comes up, yesterday was no different. My parents popped by with some organic veggies and a quick hello; how fortunate I am to have them nearby and know that I'm loved. I was reminded yesterday that I get to live in a country where I can vote and I got to vote. Plus, I'm a husband and the father of Myrtle - recognizing blessings, AKA an attitude of gratitude cures all.

-Warning-  If body fluids isn't your cup of tea, skip the paragraph below. If it is your cup of tea - gross.

This morning started off with a visit to my local medical lab where I picked up a container for my 24 hour urine sample. Yes, a 24 hour collection of pee! To live like Howard Hughes or a long haul trucker in my own home isn't a dream come true per se, but who likes getting off the couch? Faith on the other hand has very strongly expressed I should still act civilized, especially that we have three of my aunts and my grandma visiting today. 
A must have for every trucker.
After the lab we went to the hospital to meet with the radiation oncologist. It was a brief meeting where he went over his opinion of my test results thus far and his suggestion for treatment.
The glove entertained Myrtle and Myrtle entertained us.
He feels that I have plasmacytoma (due to my age) and suspects that if it is that I would not need chemo, just two minutes of radiation once a week for four weeks and that by summers end I'd be off my crutches and healed without any surgery. Sounds appealing.
Tomorrow is my bone marrow biopsy and a head to toe x-ray. By this weeks end I should have another CT scan done. By next week there will be a full diagnosis and prognosis. The soonest radiation would start would be in 2 weeks-ish. There are variables, such as if it is just plasmacytoma or if it's multiple myeloma and what stage its at, etc..

Well, I'm off to nap and dream of a crutches free long healthy life.