December 30th, 2011 (a day to remember)

Last Friday our lil' family was in Port Alberni visiting Faith's side of the family. We had plans to leave on the Friday December 23rd, leaving around 2-3pm. I had a feeling to go earlier in the day, so we did. By the time we arrived in Ladysmith I got a call from my oncologist's office to get myself over to Victoria General Hospital to get a few blood tests done and a head-to-toe x-ray.

Also, I was to pick up a jug to collect my urine for 24 hrs (by the way, what a fun thing to bring with us to a Christmas Eve party at friends... not.)

I told the lady who called that I was up-island and wasn't sure if I would make it, she said said that I needed to rush because they close at 5pm, but not so fast that I don't make it.

While getting the head-to-toe x-ray it dawned on me that they were looking for more tumors. I shouldn't have been too surprised but I was.

We walked out of VicGen by 4:58pm. A miracle! There was no line ups, it was as if I was the only patient there.

The tests were requested because my CT Scan showed that the tumor had not been shrunk. My oncologist and her colleagues deliberated over this and concluded that the mass was one of three things, 1) active cancerous tumor, 2) dead cancer cells or 3) scar tissue.

Since there is too much bone loss, a biopsy would be too invasive, even though we would know for certain.

I'll be meeting with an orthopedics surgeon on January 11th to go over the options of having my hip heal. It may mean nothing to be done, maybe a bolt or two for the fracture or a hip replacement.

Today Dr. Wai called with the tests results and she said that from comparing my the tests I had previously in March to the ones I had last Friday, that she and her colleagues concluded that my blood is overall healthy and shows NO SIGNS OF ACTIVE CANCER. That my friends means my cancer is in remission!

Faith was there with me and we listened together this fantastic news. After the call we hugged, wept and prayed giving thanks. Thank you so very much for those who have given support, kind comments and prayed for us. Those very prayers have been answered.

My sperm, was also tested last week as well and it would appear that Myrtle will be the only star of our family for years to come. We love Myrtle, LOVE her! And if we're lucky enough to be parents, we couldn't have had a better blessing than her. Myrtle is the best.

After Faith and I emptied our tears I then called my parents, my brothers and my mother-in-law. Right now we are in Calgary visiting Andrew and Ashley, so when the calls were done we then went and told them. Lots of hugs and tears of joy.

It's unlikely I'll blog in this blog again. Maybe some updates, maybe not.

In short I have learned much this past year. I know, really know God lives, He hears and answers our sincere prayers. My patience has increased, my love for all and myself has increased and I pray that it would continue to.


Not once in this past year have I worried that a shortened life would lead to less time to flip through the channels, read tabloids, work more hours, or keep up with the Jones'.


Life is too short to hold grudges, to not smile at another and say Hello and listen to the answer.

Nothing is more important then family and some quality friendships.

Thank you for reading.

For those that decided pray for my family and I thank you, with tears of gratitude I write and sincerely thank you. Whether you prayed or not, you now know they can get answered and I am forever grateful they can and that they have.

Again, thank you!

They Say 'No New Is Good News'

Now when I talk to my doctor I quickly take notes afterwards, so not miss anything. Checking my voicemail today I found out I missed a call from my oncologist:

Dr. Wai is away, while she's gone an orthopedic doctor will be determining whether or not I require surgery on my fractured or broken hip - something I would like to avoid.

More waiting, but at least this waiting means that no news is good news.

There is some pain, though not so much I think surgery would be needed. My family doctor called today to go over what I pretty much already knew and to say that he too would be gone for a few weeks. Also, that I might want to stay away from straining my hip. *Mental note, cancel Jazzercize membership.

I've slowly learned there is no quick fix, magic cure or Santa Claus that will give what I want. Though I have heard the words "managing the cancer" before, it's beginning to sink in that's exactly what I will be doing until it or me is gone.

My brother Jason (J) has Type 1 Diabetes, it's something he has managed for over half his life. I don't think of him as a diabetic, he's just J - my brother. It's not what defines him. So I'll take my cue from J, manage my cancer by overall healthy living and dealing with it when needs be. Other then that, I Ruban (Rube), like J has, will continue on with my life.

How I am doing IS different than how my body is. Sure we're connected, my body and I, but it does not define me any more than my clothes do.

J might die a "premature" death because of diabetes, likewise I might too from cancer. Premature was put in quotations for two reasons 1) Modern medicine saved J's life and will prolong mine, if nature took its course that would make our deaths premature. And 2) When your times up, your times up - no matter what your plans are He might have better plans.

(If my nephews or nieces are reading this we'll live for at least thousand years more.)

Thank you for all the prayers, support and love. Really, thank you.

I'll keep this blog updated when ever there's something to update, but really I wish there was no cancer to write about. Like my doctors I too will take a break from my cancer.

Otherwise I'll continue to write in my much less popular blog about this and that rubanrebalkin.blogspot.com or in my even much, much, very much less popular blog about my literal dreams I happen to remember youwereinmydreamlastnight.blogspot.com.

Kiwi vs. Man

Dr. Wai, my radiation oncologist called and here's the update on the plasmacytoma cancer the size of a kiwi:

My blood tests overall came back as normal. That's a good thing.

However it shows that currently I am anaemic (low red blood cells), since I have a vague understanding of it I went on Wikipedia. Some the symptoms I can really relate to are: Most commonly, people with anemia report non-specific symptoms of a feeling of weakness, or fatigue, general malaise and sometimes poor concentration. They may also report dyspnea (shortness of breath) on exertion. 

Another concern was my low white cell count. From the Mayo Clinic web site I learned this A low white blood cell count, or leukopenia, is a decrease in disease-fighting cells (leukocytes) circulating in your blood. So this means my immune system is currently down and I am to avoid the flu like the plague. If you don't want to invite me to your Christmas party just invite when coughing, that I'm not left out and won't come. It'll be a Win/Win.

The kiwi sized mass is still there. The quickest way to learn about it would be via a bone biopsy. Dr. Wai feels this actually would not be in my body's best interest, as it is very invasive. I have also a lot of bone loss and what appears to be a broken hip or a fracture. Her colleague who specializes in the pelvis region will be looking at my CT Scan tomorrow an will be weighing in on the next step along with all of their colleagues this week. Next week, by December 23rd Dr. Wai will call me with a game plan. More than likely, if their isn't a major break where surgery is required, she said I will get another CT Scan in 4-6 months and hang tight till then.

Fortunately there is life to be lived while waiting. Myrtle has the best attitude life, sure she is unaware of the a few details, but she wakes up smiling happy for another day and at the end of the day disappointed it's over. Like her I've mastered the art of delaying bedtime, now I just need to master waking up.

On another note there seems to be a hot debate that is sweeping interwebs, to eat the kiwi or to not eat the kiwi.

AND...

Discuss.

How To Have Cancer and Talk To People

I'm that guy to write it, ...well at least a guy who could plagiarize heavily the original format and twist it to suit my opinion.

TOPIC

Cancer

TuesDAY, DEC 13, 2011 5:00 PM PST

How to talk to someone without cancer

As the holidays approach, here's what your friends without cancer need to hear -- and now you have some ideas of what to say

BY Ruban Rebalkin

 (Credit: Photo taken by Ruban Rebalkin's camera, People left to right are here without permission)

TOPICS:CANCER

Christmas time and New Years can be a social minefield of joy. It’s great that in the last two weeks of the year, all the triumph's of the past 12 months get together for one last hurrah. Now, add your diagnosis of cancer to the mix. How do you interact with everyone else — not just over the eggnog at that caroling party, but from here on in? What do you say that’s genuinely helpful when the whole situation is freaking them out?

I know that it’s hard for you too; I really do. In addition to dealing with my plasmacytoma diagnosis this spring, that so far has been unsuccessfully treated, I have in the past year watched as three of my blog readers get cancer and the guy who is peer pressuring me beyond the grave to get an iPad 2, Steve Jobs, of couse died. It can be a picnic loving someone when your life on the line. Because you’re not helpless. And if you’re wringing your hands wondering how to handle yourself, Cancer Man is here to offer a few simple guidelines.  When in doubt about how to behave, stick to the basic rule of thumb that it’s about you AND them. Let me expand.

Rule 1: This is a great time to be emotionally supportive.

Honesty is a wonderfully powerful way to be. If you are lucky you'll have good acquaintances, true friends and family who care and because they don't want to lose you they will be scared. Let them know you love them, that you will do all you can do enjoy your time with them. Hear out their fears and if they're up for it they'll hear out yours. Everyone's in a different head space, because of that I've learned (and am still learning) the hard way to never judge people. Just as they aren't walking in your shoes, you're not walking theirs. 

Rule 2: It’s a wonderful time to be social.

Hospitals can be a wonderful place. I will always, always remember my baby girl, Myrtle being born in the one I get my CT Scans. Faith invariably says each time we're there "Can you believe Myrtle was born here just ___ months ago?" 

Another fond memory was being relieved that when I was 10 years old my older brother Jason, who was knocking on heaven's door was brought back to health for being treated for juvenile diabetes. At the other hospital in town I'm often reminded that is where I spent some of my most sacred time with family as my grandfather passed. Hallowed ground indeed. 

You'll make new memories at your hospital, bring family and friends when you can, and while you are there be a friend to staff and other patients. 

It doesn’t take big gestures. I've learnt from Myrtle, a smile goes a long way. A lot of people won't want to step on your toes, just as you weren't prepared for cancer, they weren't either, so take it easy on them by cutting them slack.

Rule 3: It's YOUR dramatic life event,  an opportune to bring closure.

If you think this is a good moment to crawl out of the woodwork to say sorry or express a few positive things you wish you’d said after a long ago family falling out, it is! One day will be too late, life is way, way, too short to hold a grudge or put off actually saying "I love you." Even if it's to my older, huge, bearded, bear of size brothers who might look intimidating but are really the best friends anyone could hope for. Or even my youngest brother who can't grow a beard yet.

Rule 4: Remember people care and might wonder like you have, "Why?".

Like you, others might wonder what caused this cancer, because of course there was a cause. That's the gazillion dollar question, right? Who can blame anyone for asking. If you had a habit of huffing asbesto dust and you got lung cancer, say "I reckon the 'besto got me." Other then that, "Heaven knows, but while I'm here I might never know. The important thing is I have a game plan (or about to get one) so heaven can wait a little longer."

Rule 5: Similarly, talk about your treatment. 

Own it, don't pwn it.

I was worried people would feel awkward, that my treatment, it's side effects would inconvenience them on some level. Now, I own it. I just say this is what I'm doing and remember that people ask mainly because they care. 

Who cares if people ask to be gossipy? Own it!

It's empowering to be open, shed fear and if you sense they are uncomfortable, use the Golden Rule and provide a little comfort - isn't that what you would want?

Rule 6: Be hasty with the best-case scenarios.

People without cancer appreciate your positivity and encouragement. If you die being wrong about getting better, don't worry they'll forgive you at some point. 

It's not about being hasty only to others, be hastily optimistic to your self too. I don't mean to lie per se, but enjoy the day, embrace the days your alive.

For example my best case long term scenario is that with Faith, I get to raise Myrtle into adulthood. 

Best case short term? This blog has less grammatical errors then yesterday, I enjoy a healthy lunch and have a wonderful evening with Faith and Myrtle when they come home. In the meantime I eagerly await a call from my oncologist with a game plan. 

Rule 7: On the other hand, don’t be a downer.

Statistics are helpful but they don't define you anymore than your height does. 

I cried last night, but I laughed too. 

Rule 8: Patrick Swayze's cancer is not your cancer.

Why on earth would your family and friends be experts on your cancer and treatment? They all wouldn't be, so relax and be thankful many people care enough to ask you what's going on. Their only frame of reference might be Patrick Swayze's cancer. I certainly wasn't an expert beforehand and don't expect others to be either.

Rule 9: Be useful.

Don't wait around for people to serve you, if you can serve others and yourself, do it.

Rule 10: And this is the most crucial – be guided by the person’s cues.

As you may be painfully aware, not everyone knows what to say or how to act. I can't count how many people who have said something like "I  didn't want to bombarde with cancer talk." Granted they might have said that because I may have complained about being bombarded in a previous blog. Now I don't mind, bombs away!

Just as a pregnancy is welcomed news, bringing life's greatest joy - LIFE! - a diagnosis of cancer is on the other end of the spectrum. People want you around and the thought of losing you is a compliment to how awesome you are. So thank them for their concern and be grateful they liked you before it was cool.

Bah Hum Blog

PART I

A few weeks ago my oncologists office called for me to come in, I had about a twenty minute window. Recently I just had an x-ray done, so I was a tad worried it was related to that. Long story short they forgot to tell me I had an appointment. 

It was a check-up and an opportunity for Dr. Wai begin my testing to see how the radiation treatment faired. After she was done poking and prodding me as far as her fingers could reach I went to give a blood sample. 

One week ago Faith and Myrtle joined me as I had my last test, a CT Scan. Having them there provided so much comfort. Myrtle was very cheery and was angelic as she smiled and waved at staff and patients.  

Just Dad has the goofy smile.

Myrtle's, Faith's and my life is hinged to great deal on the results. Having me think of anything else is like having a kid study on Christmas Eve, the anticipation is just too great. I'm just hoping I don't find coal in my stocking. 

Faith and I have shed so many tears this year, but this week especially. We're not so much worried as we are just feeling the gravity of our situation. 

All week I wish I was stronger somehow, more prepared emotionally to find out if I have a chance to beat  a 3-5 year life expectancy. 

I think I can grasp why the divorce rate is higher with a spouse with cancer or a terminal illness (Just ask Newt Gingrich's ex-wife). However, if a couple is on the same page their challenges can bring the best out in each other. Faith has easily risen to the challenges this year. Because of Faith stepping up to it all Myrtle and I are in better company today and sometimes I'd like to think they are too with me. 

Perhaps every weakness in ourselves and our marriage has been exposed this past year (which has been a very good thing). Our core values have shifted tremendously as we've shed the unwanted pounds of worldly fat. Things like keeping up with the Jones' ...or worse yet, the Kardashian's. Really anything that doesn't unify us as a family we're not interested in. 

It's not that I don't n̶e̶e̶d̶ want an iPad2 this Christmas, I just want 70 more Christmases much more. I'm holding out for the iPad70. 

I called my oncologist this morning and she's in clinic until the afternoon, then my call was directed to a nurse who could answer my question. Of course the nurse wasn't there and I left a message with someone. 

PART II

Wow.

Long story short my results are back and that tumor is still there - same kiwi size and all. 

I do not know what the future holds. I do not know the treatment. 

I do know Myrtle is telling me "Off!" to get up and play with her. 

My sister-in-law Colleen who made me that fantastic quilt for me (click here to see  http://ahiptumor.blogspot.com/2011/05/soldiering-on.html) is doing something else, http://www.conquercancer.ca/site/TR?px=2857009&fr_id=1413&pg=personal, if it's something that interests you, please support the the cause. 

A prayer would be nice too.


Onward and upward.

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