That's All Folks!

Recently my mother called to say hello. She asked "How are you?" I said I was good. "Really, how are you?" I assured her I was fine. She then said jokingly something about "Liar, liar, pants on fire." 

I wasn't lying per se. Physically my body is in pain, me though I'm okay/fine/good and soon my body will catch up to my mind.

Today was my nineteenth radiation appointment out of twenty. I met with the oncologist for the last time for about a month or two. In about six weeks my hip should be all healed up and me off the crutches. I'll be getting more CT scans, blood tests and whatever other fluids they see fit to test. 

THE CALL came about four months ago. A tumor the size of a kiwi was found on my hip. Later we learned I had plasmacytoma, a cancer. There is no numbered "cancer stage" for it, just something you have or don't have and some tumors are bigger then others. My oncologist said it was possible it was there for five years more or less. Of course there is no way of really knowing. 

For days and weeks after THE CALL my head was spinning. At times I just wanted to die and wanted to live to be 103; run away or never leave my room, scream, be silent; wished that no one knew, yet I wanted to talk to EVERYONE about it; prayed, wondered what the point of prayer was. When I watched TV I wanted to be literally absorbed into the screen and get to say witty one liners at the right time, then after watching I would vow to never watch TV again. 

Within 48 hrs I wasn't interested in going over all the details anymore to whomever called. I was glad people cared, however to no fault of anyone, it simply withdrew more energy than it gave. 

Those thoughts and more would swoop through my mind in a nano-second or two. It was exhausting. Just thinking about that whirlwind now is too stressful to relive. 

A day or two after THE CALL I was mid conversation with a friend, I said "I'll blog about the details and send you the link." It made sense to blog about my doctor appointments to keep my family and friends in the loop if they wanted to be. Several conversations I have had with some of my family and friends clearly indicates they don't read the blog - so whoever you are I'm glad you have read and shared this journey with me. Expressing what I was feeling about my appointments and new life, made the surreal real and was the most therapeutic thing I did.

Being diagnosed with a very rare form of cancer that mainly senior citizens get (two out of three who are black) struck me odd. For those that don't notice things like age or race I'm only 33 years old and white. 

For the past months I've been wondering what went wrong. The easiest answer is bad things just happen. Though it's true that bad things happen my gut said there might be more to the story. I've never been a drinker, smoker or drug user and whether I did or not, it seemed like I ate healthier than the average person. In short, I believe that my diet wasn't helping me.

With all the medical tests I got, one of the things found out was that I was getting adult-onset diabetes (Type 2). That's news worthy in itself, but I never brought it up because it pails in comparison to cancer and there was no need to worry more people (Mom and Dad). I already have non-alcoholic fatty liver disease (NAFLD) and hypothyroidism for people to worry about (Mom and Dad). 

Instinctually after THE CALL I cut back on junk food and within a month I lost a few pounds. Then I saw a nutritionalist and adjusted what I ate some more and lost a few more pounds. 

Type 2 Diabetes is usually for 45 years and older. If your reading comprehension is low or memory is short: I'M ONLY 33 YEARS OLD! 

I have only one body and this one body I have needs to take care of the only family I have. There's plenty of theories of why people get cancer, but Type 2 diabetes is due to a combination of lifestyle and genetic factors. I can't change my genetics, but I can change what goes in my pie hole. Dieting has never worked for me, hence getting adult-onset diabetes at 33, so I have made a switch to less processed foods, more raw and organic - that's it.

My 30 pound weight loss is from my change of diet, not from getting cancer. I have only lost my lunch once during the radiation and that was about 4 weeks ago. 

Food is just one thing that has changed since THE CALL. My value system has been refined some and I truly look at the world differently. I have questioned and reevaluated every aspect I am aware of about my life, from my address, faith, family, friends, entertainment, money, education, the roles I have in peoples lives and theirs in my own life. Simply, how I think just is not the same. Thank goodness. There are certainly things I have changed and things that I am improving.

After today's appointment we went to a beach, I sat down and Myrtle walked everywhere. She picked up rocks, a small dead crab and dried seaweed. The scenery was picture perfect and the weather even better.  These are the moments I am living for.

Myrtle, first day of summer 2011

Today is the first day of summer and tomorrow is my last radiation appointment. This to me is an end of a chapter and the beginning of a new one and I want my life to reflect that. As of now I'm not interested in writing about my tumor, no matter how hip it is. My head is no longer spinning, I don't quite feel so confused or like my life is up in the air. In fact I feel more grounded now than I did pre-diagnosis. 

There are boundless things I want to write and talk about, but I will keep that between my journal, family and maybe friends.

For the record I know that prayer has worked miracles in more ways then I can express. Thank you for those that have prayed on my and my family's behalf. In return I have prayed every single day for those that are praying for me, that their burdens may be lifted and know that they are loved. Still, I don't understand the mechanics of prayer, meaning how it works, just that praying has helped my family and I. Thank you Mom for teaching me how to pray.

Thank you for reading, thank you for caring. For old times sake perhaps one more prayer for Myrtle's dad.

Lots of love, 

Ruban

Feel free to email me rebalkin@gmail.com

And I Wouldn't Have It Any Other Way

After each radiation appointment I now take Myrtle and Faith somewhere, anywhere, for family time. We've gone to see the floating homes on Fisherman's Warf; fed the ducks (and the mooching geese, pigeons and crows) at the ponds at Beacon Hill Park; played at the parks at Willow's Beach and at Beacon Hill Park. Monday we stopped by our friends Mike and Julianne's for an impromptu play date for Myrtle and their son Owen. 

Today I drove around unsure of where to go, I wanted different yet fun. I did a quick turn and thought Myrtle would enjoy some play time with her cousin Seth who is about two weeks older then her. I was right, she had a great time! They looked at chickens in the back yard, rolled around on the trampoline, played with toys outside and inside. 

Seth showing Myrtle the chickens.

Sometimes crappy things happen and life is messy. One thing can lead to another and before you know it life looks different than dreamed of. After a week of radiation I thought it was silly driving for an hour through rush hour traffic only to just drive home - thus the idea family time afterwards was born. 

Walking down the path to Seth's door there was a single pink rose. I stopped to smell it, (it smelled wonderful actually), Faith smelled it, then I leaned Myrtle into it. Is it possible that because of this cancer nonsense I am now literally stopping to smell the roses? I'm slightly embarrassed that getting cancer and the treatments is what got me to reconsider how I spend my time, especially time with my family. These days I am so much more grateful for the time I do get to spend with them. More on this in a moment...

Today we met with the radiation oncologist for a Q&A. I asked why if I have a blood cancer is it that only my tumor is being treated. From what I gather the plasma (blood) cells that showed cancer were in the tumor, no where else. The radiation then shrinks said tumor into oblivion.

Daddy showing Myrtle the radiation machine.

I told the him the tenderness (aka pain, extreme discomfort) where the tumor is has subsided some and I don't always feel the need to use my crutches. The oncologist replied by saying that as the tumor shrinks there will be less pain, however with the tumor gone there will be a gaping hole in my bone where the tumor was. It will take about 6+ weeks after radiation for the hip to heal (much like if had I broken it). So to support the healing and avoid a break or fracture I do need to use the crutches. 

As the doc was about to leave Faith piped up and asked when we could have more children. The short answer is that I might not be able to, which also means I might be able to too. The radiation leaves a residue of sorts that could lead to deformities in a baby if one were to procreate within the year after radiation. So it'll be us three for awhile.

Faith was disappointed to hear that and expressed it as we drove away. BUT the kicker for me was what Faith said after. She was pointing out all the positive about this permanent or temporary delay. Could it be we're both growing to be more positive?! In the end we concluded that if Myrtle was our only child we're still the luckiest parents alive and be grateful for that. As a family we learned there's no use crying over spilt milk, especially if you can slurp up the stuff that's still good.

Not everything since we got married has gone as planned. Truth is not everything before we got married went as planned either. That's just life - it can get messy. Plan all you want, but sometimes an egg can hit the fan.

I didn't plan on going bald. But I love it. I feel more like a man not using hair sprays/gels/products, and living every boys dreams of not needing to comb his hair. As my brother Dion says "Hair is for girls."

I didn't plan to live on Vancouver Island. But (now) I love it. I can't believe I lived in Alberta and sometimes feel sorry for all my family and friends living there (please send your hate mail to rubanlivesincanadasparadise@vancouverisland.youdont). 

I didn't plan on being a new daddy in my 30's. But I love it. Looking back at my twenties, when I hoped I would be a dad, I was perhaps not the most selfless individual. Myrtle has a better father now than if she arrived when I first wanted to be a dad.

I didn't plan on getting THE CALL about a tumor that was a cancer, rendering me unable to work sitting on a recliner the majority of the my waking hours for months. As I've sat here  I've learned and experienced so much with the TV OFF. Enough that sometimes I'm brave enough to dare say to myself "I'm glad I got cancer." Though, I'm more happy for experiencing a positive change within, the cancer was just a catalyst. Happy that I've been able to bond with Myrtle and enjoy watching her roll over,  crawl and take her first steps for the first time. Happy her first words were "Dadda". I'm happy to say that my marriage is growing too. Our view of what's important has been altered, hopefully forever.

Today the oncologist said my hip bone will have scar tissue only a CT Scan can see and my hip will never be or feel the same as it was. 

But neither will I feel or be same either and I wouldn't have it any other way.

Ruban You Look Radiant!

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.

My American Eagle Tattoo

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.

Living Like Howard Hughes

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.

A Couch Potato's Massive Missive: The Biopsy

Meeting My Oncologist and his Posse

Monday's first appointment was at the BC Cancer Agency's Research Centre in Vancouver. Arriving there was as if I was living someone else's life. I pray several times a day for the tumor to be benign. I even say "benign" over and over again when I doubt or feel pain. So being at a cancer clinic felt just wrong.

My brother Jason came with us to help and what a great help he was. Myrtle slept most of the drive there and all through the first appointment, Jason stayed with her in the car till she awoke and stayed with her for another nap later on - Thanks J! 

The first appointment was mainly paper work ranging from my personal and family's health history to pages of questions about my physical and emotional well being since THE CALL.

Was able to be more focused answering questions in a hospital gown.

After the paperwork we met with a physical therapist who assessed my hips mobility and strength (both very low). After her, my oncologists assistant (who is a doctor) did an assessment similar to the physical therapists. 

Even Patch Adams would be confused.

Later they joined my oncologist who was being shadowed by a resident doctor and a student doctor. All five were friendly, professional and seemed to actually care. I really felt like I was in good and talented hands. What a relief.

My attending oncologist is apparently world renowned for limb salvage surgeries. He informed me that due to the tumor too much of my hip bone has been weakened to reconstruct. He requested that I get more hip X-Rays so he and his team have a better understanding of how to proceed regarding my surgery.

At my follow up appointment on March 28th they will know what the game plan of my recovery will entail; whether the tumor is malignant or benign will of course determine much. Either way it sounds like I should be getting a new hip.

The Biopsy

My second appointment was the biopsy at VGH. I brought my camera and the doctor there said "How odd that you would want a picture" and seemed hesitant about it. I said that this was not a normal Monday for me and figured I might as well document this odd part of my life. Before I knew it the nurse and doctor were discussing the best angle to take a picture. 

Moments before being prepped before the biopsy.

It felt surreal lying there, waiting for another CT Scan. Cloths were draped over me only leaving my head and my left hip uncovered. My hip was cleaned with a pink solution and a cotton swap. 


Laying there I couldn't see anything, the doctor was good at describing what was being done. He explained that he was about to freeze the area, like a dentist does. After seeing the first needle (it was huge) I decided to not look at the rest as each one would be bigger to reach the bone.


After I was frozen the CT Scan was used to locate the tumor and map where the biopsy was to take place. The doctor then got out a scalpel and informed me that I would have an inch scar and that it would also be used later like "X" on a map for my surgery. The incision this day was for the biopsy needle.  


I didn't see biopsy being performed, and though I felt no pain I sure felt the pressure of it. Five core samples were taken from the tumor. Each time felt like the thump of a bass speaker was pounding in my hip.


I asked to see the tumor samples and they were in a small bottle immersed in a clear solution. Each one was about an inch in length and thinner the dry spaghetti. They were white with red dots through out it. 


After the biopsy my third and final appointment was back to the BC Cancer Agency for more hip X-Rays.  

Couch Potato

Due to my hip bone being so weak my oncologist said to keep off it altogether. Considering how uncomfortable/painful it was for me to travel here from Victoria the best conclusion was to stay at Jason and Colleen's till the next appointment. 

Walking and sitting hurt, it's not super painful, more super uncomfortable, but before too long it becomes painful. Moving little and lying down doing nothing are the doctors orders, which is good because it's all I can do. Mentally it's tough being so unproductive and unable to help or just do what I want.


It occurred to me today that I need to step back from a few things: being a Cub Scout leader, teaching Sunday school, gardening, going grocery shopping, taking Myrtle to her swimming lessons, etc.  


Myrtle on my lap doesn't really work well. I can't carry her, change her or do much really other than talk and interact with her until she crawls away. I'm so happy she has her Uncle Jason, Aunt Colleen cousins and their dog and cat to share her curiosities beyond the couch with.

Uncle Jason and Myrtle reading.

It's hard for me to accept my current limitations, but it's more emotionally wearing explaining this to others and even more difficult asking for help. But, if I were to get a fracture I'd be more of a burden and in much more pain.


Between now and March 28th I'll just hurry up and wait, catch up on some reading, thinking and emails. 


Even though the biopsy has been done, I still pray for it to be benign and that I will have a swift recovery and if you actually read this far why not join me?  


All I want is to have a happy and healthy family to provide for and enjoy friendships along the way.

CT & Bone Scans Booked and Some Thoughts

On Tuesday I will have a CT Scan and Thursday I will be having a bone scan. Shortly after that I will have the biopsy.


The past 48 hours has been a roller coaster of tears and laughter. Lots of hugs and kind words shared.


Five years ago my life long friend Russel was diagnosed with cancer while his wife Jenn was expecting their first child.  I remember imagining what they might be thinking and feeling.  Never did I think that I would call Russ because I was in a similar situation.  I'm glad Russel answered his phone.  He shared a lot, had a good sense of humour and I was able to ask of his experience was. We had talked about it before, but maybe this was the first time I really listened. Thank you Russel.


So what am I thinking?


Everything!


Some things are not worth writing and you can guess easily.


However, I do feel very optimistic. Wednesday night I cried quite a bit. Thursday quite a bit less. Today no tears have dropped.


I don't know really how or why prayers work, but I have felt prayed for, felt comforted.


Moments after the THE CALL on Wednesday I felt extreme sorrow for every person I had ever crossed, anything I've done or said that wasn't right. Not quite a death bed repentance moment, but you can sure bet I said a prayer and made a few long deserving phone calls.


Actually, I have had a lot of good conversations lately (phone, email, text, bbm, Fb, face to face). I can almost understand why people have faked having cancer, knowing family and friends care is a good feeling.  My brother posted this blogs link on his Fb with this comment "my brothers quest for more attention...follow his journey and give him the attention he craves!"  The reason the conversations have been good is mainly because I love and care for those that have reached out.  Having family that are friends and friends that are like family is encouraging and fuels my optimism.


I hope the the tumor is benign and that the purpose of this is blog is short lived.