The cost of being ill; Cut's, cut's and more cut's!

It's becoming more difficult by the day to have any hope at all for a future that will be filled with lack of care or benefits for those with illnesses. It seems that all businesses and governments want to do is cut benefits related to heath care.

Everyday, you hear about another cut, or budget that reduces the allowances for health care. It is very obvious that those involved in making those decisions do not have illnesses or family members with illnesses. Because if they did, they surely would not be voting in favor of these cuts.

All they are doing is passing on this burden to future governments or CEO' s to deal with. When that happens, the costs will be so astronomical that either you will be taxed to death or left to your death. I am honestly beginning to think that, that is exactly what they want for people with chronic or life threatening illness, death, it's cheaper for them if your dead than it is to care for you, and they make that more obvious by the day.

I personally am affected by these cuts and will surely be affected in the future as well. Being in either an injured or ill state for the past seven years or so has taken it's toll on us and on our finances as well. It was determined for me three years ago that I would no longer be able to work, and with a disability plan that deducts household earnings or income dollar for dollar, Brenda going back to work would have zero effect on our income until this benefit runs out.

That time is coming near where I am going to lose my disability income that I had through my employer. You see, we once had a Long Term Disability plan that we, the employees. paid 100% of the premium and that when needed, paid you either till you went back to work, age 65, or you died.

Over the past two collective bargaining agreements my union failed to properly inform the employees and therefore allowed them to collectively vote away the terms we had in place, by recommending ratification of those agreements.

The first agreement, back in 2008, changed those terms. The time payable to employees on Long Term Disability went from return to work, age 65 or death, to return to work, death or 5 years which ever came first. This is where it affected me, and I am at the point where the 5 years is up. That changed again in our current contract and that maximum is now return to work, death, 3 years or length of seniority of less than three years!!

What I'll never understand is how the union allowed this to even happen, as we the employees pay 100% of that premium for long term disability!! We the employees should be dictating the terms of that, not the employer!

Also, I have been affected by cuts to my other benefits as well, which includes my Green Shield coverage which covers my drug plan, dental, and other health related benefits. That same contract which cut the length of my long term disability coverage also cut my Green Shield benefits. Prior to this contract we paid a $3.00 co-pay on all drugs covered under the plan, so that meant I paid $3.00 for each prescription I had. That covered your spouse as well as any children as well.

That coverage went from a $3.00 co-pay to a  20% co-pay with no cap. At that particular time I was having to inject myself at home every 3 weeks with a drug call Neupogen which was to boost my white blood cell count which was being severely affected by the chemo treatments I was undergoing at the time. The actual cost of that drug was $2,700.00 and change, for which I paid $3.00.

With this new co-pay of 20% this drugs was now going to cost me $540.00 out of pocket every three weeks! I told them (the union and fellow employee's) at the time they were in effect signing my death warrant if they ratified that deal. I even brought all my receipts to show and explain to them what was going to happen to me if they signed that deal.

Well, they signed the deal, I could not believe they did that, I told them at the time, I hoped they or any of their family members never got ill, because this is what they would have to look forward to. That did not seem to phase anyone at all. I even wrote a letter to the union telling them they just bargained with my life and that of others, should they fall ill with a life threatening illness.No response, not that I expected one.

Fortunately I have a cancer center that cares about it's patients, and through them anonymous funding was found to pay that $540.00 co-pay I was now faced with. Either that or I would have been spending a lot of time in the hospital fighting infections which could have been life threatening.

Now, I am once again faced with a financial predicament due to cuts in benefits. That is the 5 year LTD term which is up. Now that I am faced with the fact, my income will decrease by more than 1k, and what I'm left with will not pay my rent and bills.

When I say bills, I am only speaking of things such as phone (cell and home), Internet & cable, car and life insurance. You see I have no credit debt, that was cleared when we were forced to declare personal bankruptcy just over 7 years ago, due to my reduced income as I was on reduced hours for a year while I waited for a surgery date due to a work related injury which blew out my knee.

So thankfully I don't have that debt now, or I'd be forced into that situation anyway, and that's one less stress I need right now. Stress, that's another issue right now that I'm dealing with in the face of all this other stuff going on. Stress is not something I need right now, but will have to face and get through with the help of my social worker at the cancer center. Thank goodness that is covered!!

What are we going to do? Well, that is still not 100% clear yet, but in the meantime Brenda will go back into the workforce after not having to work for the past 17 yrs. Not easy, and not something I am happy about, but what else are we to do. So it's suck it up like everyone else has to.

Being ill and faced with a life threatening illness not only takes it's toll on you the patient, but your spouses and caregivers as well.

So do I sound bitter about the cuts that go on, your damn right I do, and when I fight for things, it's not just for me but for others in the same situation. These things will still be going on after I'm gone, I'm sure. But know this, I will do everything I can to voice the concerns of those in this situation!!

To business and Government. STOP THE CUTS to health care and disability pensions!! Future generations and Governments are going to be faced with caring for a whole lot of sick people with no where to go and no private insurances to help them along the way. Yes, you may think they are better off dead it will indeed cost you less, but you will be paying for all the funerals, as no one will have the capability of paying for them!!

What will happen to me? That remains to be seen, however, if nothing develops soon cell phones will be cancelled, then internet, and so on. This is were I have to stop now. I could go on for hours, but then some would accuse me of just being a bigger whiner than I am now in their eyes!

Please write your Federal, Provincial and Municipal politicians today, stop the cuts to health and long term care now!



Provincial Members of Parliament

Members of Canadian Parliament









City of Windsor Elected Officials







City of Windsor Mayor Eddie Francis' Office

Windsor City Councilors Offices

An Update, Five Year Cancerversary & Stable

Been some time since my last blog, however having these last two appointments with my Oncologists and the Ultrasound, I thought I'd wait so I could bring you all fully up to date. As well there are all the other goings on since that last blog.

First up, we had a great holiday season with family and friends, Christmas Eve was spent at my mother's house along with my brother, and my son and his family as well. Christmas Eve at mom's is an annual tradition we've been doing for some time now. Christmas eve I also started having a sore throat, but more of that to come.

Brenda with her Mom & Brother and the
blanket she made her mom, Christmas Day

Christmas day was spent at our apartment with Brenda's mom and Brother as well as friends of ours Michelle and Jerry whom we've known for some time now. Food was aplenty! a turkey, ham, mashed potatoes, vegetable, and all the other trimmings! Brenda's mom and brother had come earlier in the day and we did our gift exchange then. I was all I could do to contain myself when I unwrapped the Pink Floyd Discovery Edition box set, which has all 14 of their albums and digitally remastered and a collectors book included as well. This is something I've wanted for a long time and getting the newest box set was the icing on the cake! Everyone scored well, Brenda got the car seat and steering wheel covers she wanted so now our vehicle has been pinkified with black covers, covered in pink hearts.Thirty years ago I'd have never lived down driving a car with pink heart seat covers!

Brenda working on Christmas Dinner

Later in the afternoon when everyone was here we sat and had fun conversation, dinner, and more conversation, a great day and evening overall. Boxing day, I started feeling a bit worse, but did not let that get in the way, as the day was spent with my son Travis his wife Bonnie and my three grandchildren Emily, Andre and Megan. Also my brother Jamie was here as well. We spent the day opening gifts again, watching the kids play, Megan slept most of the time, and let me tell you just watching the kids wears me out let alone running around with them! Again a great dinner of mostly left overs from the night before.

My son Travis & wife Bonnie,
he's wearing the beard had Brenda
made him for Christmas! 

Our granddaughter Emily with a
couple of her gifts

My brother Jamie our Grandson Andre & I
Christmas day after he wore us out!

Our newest grandchild Megan,
not happy about the ears!

After all the excitement of Christmas and time with family and friend's it was time to relax and recoup. That was until the wee hours of Dec. 29th when I got up at 3am coughing up blood! I woke up Brenda to tell her what had just happened and we were off to the hospital. Upon arrival we were told there would be a mega wait time, even though the waiting room didn't seem that crowded. I asked the triage nurse if the wait would be mega enough that I should send Brenda back home to bed while I waited. She said "yes", so I sent Brenda back home to bed, told her I'd be fine. I then asked to be put in a "quiet" room due to my compromised immune system and a waiting room with sick people in it.

As the normal quiet room was already occupied, they put me in the pediatric waiting room which was empty. Actually with the way it was set up in there with vinyl covered bench seating I was able to get a sheet from the nurse to curl it up into a pillow, turn out the lights, close the door, and slept off and on until finally around 8am the nurse came in and got me go to a room to see the doctor.

After going over everything with the doctor, (by the way, by this time I was no longer coughing up blood) he took blood work and sent me for a chest x-ray. After about an hour or so he came back in the room, said everything looked OK and that I most likely had a bronchial infection and gave me antibiotics to take. I called  Brenda to come and pick me up around 11am. It was back home and back to bed for me after a stop at the drug store on the way home.

By Jan.2/12 the infection seemed to be getting worse and I also was losing my voice, so rather than a long wait at the hospital again, I just went to a local walk in clinic. The waiting room their was full with people hacking and coughing. Luckily the nurse said it would be a long wait and that I probably would not see the doctor until 3:15pm, it was noon when I checked in. She also told me it would be fine if I left and came back at 3:15 and that I would not lose my spot.

When Brenda dropped me off, she left to go get gas and stop at the grocery store. So I wandered across the street to Tim Horton's for a coffee while waiting, called her and told her where I was. She stopped in and joined me and had a tea. I ended up just staying there at Tim Horton's till my appointment at the clinic.

Finally at 3pm I wandered across the street and seen the doctor. I showed him what the doctor at the hospital had given me, and he had me stop taking those antibiotics and gave me new ones along with an inhaler and Hycodan for the cough at night so I could get a good nights sleep. That infection lasted about three weeks!

Going into the New Year I had an ultrasound done on my abdomen January 16th, this had been ordered by my medical oncologist at my last visit with her, and was done to follow up on the abdominal pain/discomfort I've been having on the right side. I would not know the results of this until I seen my radiation oncologist on January 20th.

Seeing my radiation oncologist on the 20th was a milestone event for me as well. My very first cancer treatment, which was radiation on my throat for the squamous cell carcinoma was January 23 2007, which made this the five year mark since that treatment, which by the way has worked to this day!

The doctor and I discussed that milestone and it's importance. In the cancer world doctor's really don't like to use the words "cancer free" until the five year mark. I asked him to do a scope of my throat during this visit, he replied, "are you sure you want me to do that? You really don't need one! I replied that I did indeed want a scope just so I could say there was no evidence of disease and then I could scratch one of three cancers of the list of the ones I've had.

He also went over the results of the ultrasound with me and checked out my abdomen. He also told me before I left that he would be going over my last few scans and tests with the radiologist just to have another look and make sure they were not missing anything going on in the abdomen that would be causing the pain/discomfort. He said he would try to have the results of that available for when I see my medical oncologist on February 1st. Brenda also took a photo of my radiation oncologist Dr. Schneider and I to mark the event. I also seen my Dietitian Donna Danelon at this visit and snapped a photo of her too!

My Dietitian Donna Danelon

Dr. Schneider & I at my
5yr follow-up exam.

Moving on to February, I seen my medical oncologist on the 1st and we went over my current status. She felt I was doing well and that the disease is "stable". There has been very minimal growth in the affected lympnodes and she went over the one on my left jaw/chin area and felt it hadn't changed much since my last visit. She was also happy that I had lost a few pounds and wants me to take better care of myself. She is also going to order some further tests from my blood draw that day to be sure there is nothing related to the abdominal pain/discomfort.

As things are holding stable, she has decided for now to decrease the frequency of our visits so I will see her again sometime in September of 2012. In between now and then I will be seeing my radiation oncologist again  in May, and if anything "pops" up between now and then I can always call either of them and they would see me a.s.a.p.

CTV's Arms Bumanlag

Also I failed to mention earlier, I did a live t.v. appearance along with Renata Sznajkart who is the new Events and Fundraising Coordinator at the Windsor & Essex County Cancer Centre Foundation. We were on CTV Windsor during the 6pm weather segment January 27thwith Arms Bumanlag our local weather specialist to promote the Foundations 16th Annual Bowl-a-thon, which is taking place February 11 2012. This is a fun event and this year we are raising funds for the Men's Comprehensive Health Program at the Cancer Centre, so if you in the Windsor area come on out and have a fun afternoon of bowling and support a great cause at the same time. Lot's of prizes to be won as well! Sponsorship Opportunities are still available!

Till next time.....xxx

p.s. I am currently entered into a contest to win the use of a luxury suite for a Windsor Spitfires Hockey game, and have some serious competition, so if you'd like to help, just go to the following link and "like" my photo, it's the 1st one, and be sure to hit the like button under the photo, and I thank you! Will keep you posted how it goes.

Chasing The Cure.

Although my journey began back in 2006, I don't think it was till around 2008 that I began doing "more" research with regard to treatment options. Not that I had not already been scouring the Internet blindly looking at every possible thing out there with regard to stage four Non-Hodgkin Lymphoma.

I had been, but somewhat blindly and not knowing what exactly what it was I was looking for, or knowing how to "weed out" the good from the bad on the Internet. Let me tell you there is an answer to anything your looking for out there in cyber-land, and you'll find both pro's, con's and everything in between. Mind boggling actually.

But, back to 2008, this is when I was diagnosed for the third time, second with NHL, and now the possibility of a Stem Cell Transplant was being put in front of me. This is when a lot more questions were asked, and the desire for more information came about.

I was sometime around the end of September or beginning of October of that year that I was referred to Dr. Xenocostas at the Cancer Center of the London, Dr. Xenocostas is a Consultant of Hematology and was whom I was referred to. My initial consultation with him was very thorough  and I learned a lot. This was actually the first time I had an Oncologist put numbers and odds in front of me.

A whole new perspective had now come to light, these numbers and odds I think were my wake up call to start taking charge of becoming an informed patient. I don't know about others, but for me up until this point, I just went along with everything I was being told, and not knowing what was going on most of the time, took it as it came to me.

Now was the time for question, lots of questions. Also, I became part of several social media groups in order to sort out where to find the "good" information. I thought this would make my search for information easier. Well, let me tell you, there are also plenty of "good" sources of information out there. What I had to do was narrow it down to a select few that were trusted sites of those I spoke with on social media.

But back to Dr. Xenocostas and my pending Stem Cell Transplant and the "numbers" and "odds" associated with it. Dr. X. informed me that in my current state at the time I probably had about a 20-25 percent chance of achieving any type of long term remission. So, what would my odds be by proceeding with the Stem Cell Transplant? The answer came from him pretty quick, and that was, my odds with the Transplant at best would be a 50/50 chance at any type of long term remission, and that was the best he could give me.

After filling me in on the procedure and all the risks involved, I made the decision to proceed. There was very slim chance of a cure, however I was willing to do what it would take to get the longest remission period possible. The details of what happened next and the transplant itself are described in a previous post.

This is what I would probably call ground zero, or the beginning of my chase for a cure. I was not going to stop at just 50/50 odds, I wanted more, I want a cure! Since the transplant I've had two relapses, and not really sure I can call them relapses, as the Non Hodgkin's had transformed into a Hodgkin's! The first relapse was a stage one, confirmed by the surgical biopsy of a node on my neck. Turned out to be a stage one, Nodular Lymphocyte Predominate Hodgkin's. A year later relapsed again, however this time a stage three diagnosis. Nodular Lymphocyte Predominate Hodgkin's once again. A Surgical biopsy of the enlarged nodes in my chest, a bone marrow biopsy and as well a PET/CT to stage it were conducted.

During the initial conversation with my Oncologist she discussed with me a clinical trial I had previously asked about, and encouraged me to seek a second opinion in the U.S. where I could also try to get enrolled in that clinical trial. I did just that, I called the Karmanos Cancer Institute in Detroit Mi. where I set up an appointment for the second opinion, as well as for them to re examine my pathology samples.

A copy of my medical records were sent over to them, and as well I picked up my pathology slides to bring with me for them to look at. All of this was being paid for out of my own pocket, as OHIP does not cover for  out of country second opinions, and will not cover a clinical trial as it is deemed experimental. I had to pay for the consultation (second opinion and written report) and as well it was an additional fee to look at the pathology slides and written report.

Unfortunately I was not a candidate for the SGN-35 (Adcetris) trial due to already having CIPN, (chemo induced peripheral neuropathy) which can be a side effect of Adcetris.  I did learn a little more about my current diagnosis from this visit and the report, however the majority of what was in it, I already knew. That's all part of chasing the cure and looking for answers. I've had several Dr's look at my case and for the most part the answers are always the same.

Is there something more out there? Is there a cure to chase?

I, in my own opinion, I believe there is. What is it? and were is it? are the answers that need to be found. In the meantime I will continue my own research and also look at the recommendations of others.

Until then, it's Watch & Wait.

"and maybe a couple of gifts under the tree too"

All I want for Christmas is a cure for cancer. If only...., never mind Christmas, just a cure would be fine with me. This would also be #1 on my three wishes, wish list, should I ever get them. You can also count on this, when I check in at the gate with St. Peter, this will also be a wish I ask to be granted  as well.

Looking at cancer related stuff most every day, I see article after article that talks about how we have made great strides with this disease of cancer. How we have now improved treatment protocols to such, cancer patients are living longer, and longer. Great news! fantastic, I am all for that, however, having said that, I would also like to point out that we are not hearing anything positive as to the "cause" of cancers.

Unfortunately the incidents of someone getting cancer are on the rise, significantly! It is now the number one cause of death in every province in Canada, beating out heart disease. Therefore there is a dire need to get to the causes and stop it at the source.

Yes there has been proven research that definitely pinpoints the cause in some instances, but I guess what I am trying to get at is, we need more research dollars put towards finding the cause. We've gotten pretty good at finding drugs and research into having people living with cancer doing just that, living with cancer.

I think it was probably sometime around my second or third relapse that one of my doctors told me the following; "we can now treat lymphomas as a chronic condition, just like controlling diabetes, we can control the lymphoma". In most cases today, that is a fairly true statement. Eventually, just like in some severe cases of diabetes, you may run out of options unfortunately.

This is where I in my own opinion believe we need to divert some of the money and funding going into research for a cure, and refocus on finding the specific causes. After all, you can't cure something you don't know the cause of right? I know this will cause some debate, but if not the cancer getting you eventually, even after dozens of years of remission, then a side effect of treatments, such as cardiovascular issues, kidney and liver related issues may get you.

Again, just my own personal opinion related to articles and papers I've read on these things. My own personal worry is heart issues. There are some new studies out that have me even more concerned about that now. Seems for a stage one relapse, radiation was the front line treatment in a lot of cases, and mine, and was the norm. Well, new studies are indicating that chemotherapy might be the better route as radiation related cardiac issues are coming to light now.

You could also say that about chemotherapy too in some cases, let's face it R-CHOP and ABVD both contain "the red devil" Adriamycin, and they don't do a Muga Scan of the heart to measure the thickness of your left ventricle for nothing now do they.

So back to the point of this blog today, let's start throwing some funding back at finding the cause, then we don't even need to worry about any of the above.

So, What I want for Christmas is a Cure for Cancer, if only.... and maybe a couple of gifts under the tree too!

Me with my  cake courtesy of AutoMaxx

Moving on, this week I found myself celebrating the 3rd anniversary of my Bone Marrow/Stem Cell Transplant, and also my 53rd birthday. Brenda and I found ourselves at the WFCU Center in Windsor to see the Windsor Spitfires take on the Brampton Bulls in OHL action. You see, my son, Travis, won 14 tickets in a luxury suite to enjoy the game from, compliments of AutoMaxx Pre-Owned Super Center. Not only did we get to see the game but we enjoyed food and beverage and to our surprise a Birthday cake sent by AutoMaxx owners Chis and Doris Taylor, great people, so if your in the market for a Pre-Owned vehicle then you need to look no further than AutoMaxx Pre-Owned Super Center.

My brother Jamie,Me and Brenda
enjoying the game from the suite!

Our Grand Kids Andre, Emily
and their Aunt Erin.

It was indeed a good evening all around including a win by our beloved Spitfires they beat the Bulls 2-1 and celebrating with family as well! Our grandchildren, Emily and Andre also enjoyed their very first professional hockey game too! As well my brother was there to celebrate with us as well. Travis also got to treat some of his friends to a "suite" experience for a game.

Travis and his friends enjoying the view from the suite.

Pre game warm up

*1- All I Want for Christmas is a Cure for Cancer badge, courtesy of : http://www.gotcancer.org/

Stick it to Cancer!

I start this by saying that I feel like I'm going through withdrawals. I have not had any doctor or oncologist appointments in a while now, and I don't see either oncologist until the new year. This has probably been the longest period I will go without seeing one doctor or the other.

I still have my appointments with my social worker at the cancer center, and also appointments with my dietitian there as well, so I'm not totally without being at the center for one thing or another. I have to say that I've gotten attached to the place. A place you never really want to see or be in, however after spending so much time there you get attached to the people there. Such a fantastic group there, I don't know how they do it, always so bright, cheerful and always with a smile.

The Montreal Stars Vs. The Toronto Furies

Brenda working the T-shirt table This past 

Me manning the T-shirt table.

This past weekend Brenda and I had the opportunity to volunteer for The Breast Ride Ever Stick it to Cancer Canadian Women's Hockey League event benefiting the Cancer Center, and seen some of those smiling faces there. We  both enjoyed working that event and look forward to it again next year.

Dec 08/08

As I continue writing this today, December 1 2011, I am reflecting on where I was in my journey just three years ago today. Today back in 2008 it was day 0 of my stem cell / bone marrow transplant, a procedure which took all of forty five minutes to re-infuse me with my own cells/marrow and seemed such a simple process for all the hoopla about it. Oh how naive I was back then to think it was so simple. Within a couple days of the re-infusion, when my immune system was all but gone, the sore throat, mouth sores, severe diarrhea and just the over all pain, began taking over my body.

Not so simple at all I found out, and in very short order! As I reflect today, I went back in the history of my Facebook notes and re-read from that time period. There was a gap between December 5 and December 10th with no entries. No entries because it's a period in time that to this day is very foggy in my memory. The only real recollection other than being hooked up to a morphine pain pump and one of the days having several doctors in my room due to having an almost zero blood pressure I don't recall much else.

50th Ice Cream Cake!

Somewhere in there was my 50th birthday, for which I have photo's Brenda took, and I look back on to actually see how "out of it" I really was. I also recall the ice cream cake Brenda and her mom brought me, thinking as I did, that it would be soothing on the sore throat. Wrong! I had maybe one and a half pieces. The nurses on the floor got the majority of that cake!

Cranking up the Floyd on the Mp3!

The Mp3 player Brenda had gotten me was an added bonus to being "out of it" , she loaded it with nothing but Pink Floyd tunes. How perfect, being a huge Pink Floyd fan, and this is why I am even more a fan today, if that is possible. That music got me through some of the toughest days of my life.

The next few years have still been an up an down battle, being careful to keep away from sick people and not get sick myself. A new diagnosis of Nodular Lymphocyte Predominate Hodgkin's since then in January of 2010, then a relapse confirmed again in January 2011.

It will be a year on December 17th since my oncologist called with the news of the enlarged nodes in my mediastinal region and I've been on watch and wait since. My latest scans still showed very minimal growth, however, I'm far from being comfortable with that. After all, it's cancer and it's growing within me. How long is long enough to watch and wait? How far do you let it go? I've been told that as long as it's not interfering with anything internally and not causing any pain or problems then there is no need to worry.

Well, watch and "worry" is how I refer to it these days, because that is exactly what I do, worry.  I worry about, what happens if I wait to long to start treatment? What happens if I do treatment now, use up one of my last few options and I relapse again? Will I relapse again? Am I being paranoid by looking at other options?

There seems to be many "off label" options out there, that may, or may not, be right at taking out this beast, but then again are they right for me? They are, after all, outside of the box options that may work for some, but not others. My journey with this disease has been anything but "normal", and therefore makes me leery of everything. Like treatment now, treatment later, clinical trial...etc.

I recall thinking at 48 when I was diagnosed the very first time, as well as the next two diagnosis after that, that I just wanted to make it to 50! Having had three cancer diagnosis all within a year, odds did not seem that good I would. Goes to show you what numbers and odds mean in the bigger picture of things, NOTHING!

The holidays are fast approaching, the Bachmeier,(Brenda's mom's side of the family) Annual Christmas get together is this Sunday, my 53rd Birthday is in a week, which by the way I'll be spending in a Luxury suite at the WFCU Center for a Spitfires game, my son won a luxury suite for the game from Automaxx Pre-Owned Super Store, and then Christmas and New Years.  So,I'll put it all aside all the "watch & worry" for now, enjoy the get together this Sunday, my Birthday, Christmas, New Years and the time with family and friends the holidays bring, and pick up the watch & worry again some time in the new year. My next oncologist appointments are in January and February, so I'll discuss these issues with them then.

I'll post another update after my Birthday to keep you all abreast of all that's going on this coming week, until then.

Tim, xxx

Time

Other than for "ticking away the moments that make up a dull day, fritter and wasting the hours in an off hand way", it's time for several other things.

(A little music for your listening pleasure, either before, during or after reading today's blog. Enjoy!)



This past Wednesday I had a follow up appointment with my Oncologist Dr. K. and seems all is going well. She had the report back from the Endocrinologist which stated that although a polyp was found and removed everything looked well. At the time she did not have the pathology report from the polyp. She also stated that time, was on my side for at least a few more years.

I seen my Endocrinologist, Dr. P. today and pathology was fine, and the polyp was benign. He did state however, and showed me a photograph, that it was an "unusual" formation for a polyp, and that I should have a follow up colonoscopy yearly now.

So, all these appointments out of the way, and no new appointments now till the new year, it's time to start thinking about taking care of me. By that I mean all the other stuff. Dr. K. mentioned my glucose levels were quite high this time around, I don't think the two mini chocolate bars out of the Halloween bucket in the lobby helped matters!, and that it's time to take care of that, and also to start working on my weight, now that other things are in check for now.

I agreed, and asked her if she was up for that monumental task. She said she was, and would be sending a memo to my family doctor, Dr. A. to follow up on that, and to start working with me on the weight issue. So, yes, time to start working on all of this. First on the list will be a "junk food" cleansing of the apartment, then I can get underway.

This was also an interesting week in another way. The CBC Windsor office contacted me earlier in the week, as they had through my Twitter account seen this blog. They were inspired by what they had seen and read, and asked if I would be interested in doing an interview with them. I replied, absolutely! you know me, if I have a chance to spread awareness and/or to help even one person with this horrible disease I will.

They contacted me Wednesday evening to say reporter Allison Johnson would be dropping by to interview me at 10:30am Thursday morning. I was thrilled to have this opportunity to share my story with others,and I asked if it was related to a cancer feature. I was told that it was going to be related to the story that came out this week, stating Cancer was now the number one cause of death in every province in Canada

Thursday morning Allison and her camerawoman arrived at 10:30am right on time to do the interview. We chatted and taped till noon! Allison was very pleasant and I was almost immediately put at ease to tell my story openly and honestly. We discussed many topics along with taping many things, what came out in the edit on the CBC Windsor News @ 6 were the best segments of the taping we did, all of what they could fit into the segment.

I was even more in awe this morning when I seen the story had been mentioned in a link on the CBC.ca home page, which meant people could see it nation wide! I am honored to be mentioned at all, and I thank the CBC and the Windsor team for all they did to make this happen.

So it's been a rather awesome week for me all around, and about TIME to get on with things that need to be fixed with me and to try to put the cancer to the rear of the thought process for now. So, I leave you with, the link to the article and video of my day with the CBC. Thank you all for your, yep, time!

Man beats cancer four times in five years.

Ninety-nine percent determination, real, determination.

Most of you know by now that I have been off work since first diagnosed with cancer. The date is etched into my mind, December 2, 2006. This date is memorable for many reasons, most important of all is the date I had my first biopsy, which was for the suspected Squamous Cell Carcinoma near my left vocal chord. Also, it was the day I quit smoking, and have never looked back! Due to an extremely sore throat after the biopsy I did not go back to work, and it was while I was off, about five days later, when I got the news that I indeed had cancer

Another reason it is a vivid at this time, is because this is when I first went on S&A (sick & accident disability), this was the beginning of a nightmare that I feel could have been avoided had my employer let me go off a day earlier . The reason for wanting to go off a day earlier was twofold, firstly, it would have allowed me to be less stressed about going in for the biopsy, by letting me better prepare myself for the 6am arrival at the hospital for the day surgery. Secondly, and probably more importantly, December 1 2006 was the day my employer decided to switch insurance carriers for our S&A, LTD and Life insurance. As of December 2 2006, we were starting with a new carrier, and I was going to be the guinea pig so to speak.

Well as it turns out my concerns were warranted. You see, the policy under the new carrier stated that benefits would be paid from day one if you were admitted to a hospital or admitted for a "day surgery". Well after two weeks off and no cheque yet, I began making some serious inquires. What I was being told was that the insurance company deemed my "day surgery" a "procedure" for which they did not pay benefits from day one, and benefits would begin after 10 consecutive days off.

I was not falling for that! And so it began. I approached my union about it, and even showed them the insurance papers filled out by the surgeon which stated, "Day Surgery" and was checked off. Apparently there was another box checked as well to do with "procedure", and that was causing an issue.

I had just recently had a biopsy which determined I had cancer, I was going to have to undergo a series of 25 radiation treatments a.s.a.p! So my focus at this point was one of determination, real , determination. I went to my union hall with my case to file a grievance, I was told at the time by one of the top officials at the union hall that this was a "slam dunk" case and not to worry. Worry, yeah right, now nearing Christmas and still no cheque from the insurance company, worry was the daily theme.

Christmas and New years day both came and went, and still, no cheque! Several calls were made during those weeks, to company payroll, the union local, and the insurance company. The insurance company was still claiming I had a "procedure" when the paper work clearly indicated "Day Surgery". One little box of the form checked off in error because of the way the form was laid out, yet they knew I had "day surgery"!

By the end of the first week of January 2007, I finally had a cheque in hand. Less of course the first weeks pay that I was off. This was going to be a battle. Step two of the grievance procedure came and went with no results, and now the union local was saying I did not have a case! What! Back up the train, they told me I had a "slam dunk" case, what happened to that. Well it seems the union official I was dealing with sent a letter to the insurance company handling the claim and got a return letter basically telling him to go fly a kite, so to speak. That was where it was going to lay. I was informed it was not a strong enough case to take to arbitration based on the box that was accidentally checked of by the surgeon.

After further discussions with the union's national rep, I was informed that if I could come up with something in writing that states I had "Day Surgery", or any kind of surgery they would then look at pursuing the case. After several letters, paid for out of pocket!, the union, and in particular our National Rep. was stating those letters were not good enough, when I asked him "exactly what are you looking for", all he could come up with is "something that says I had "day surgery". Just to mention here, this was a "new" National Rep I was dealing with, just freshly moved up in the ranks to that position.

I informed him that two letters I gave him both stated I had "day surgery". Not good enough apparently, and no explanation as to why! So so far $150.00 out of pocket to try to get $500.00 they owe me. At this rate by the time I'm done there will be nothing to claim and I'll be in the hole!


Furious does not even begin to explain how I was felling, not to mention the date of my first radiation treatment was fast approaching, and there were tests to be done, masks to be made and a C/T Simulation to go through to set it all up! Stress? you betcha! However, that only made my determination stronger, and they, along with this cancer, were not going to beat me. One more doctor to see, my Family Doctor. I dropped into his office one day as I was at the drugstore picking up a prescription anyway, and just happened to ask his nurse if she could look in my file and see if there was anything in there that says I had "day surgery".


BINGO! there it was in black and white, the notes from the surgeon who did the biopsy describing step by step what he did with me from the time I entered the O.R. suite! Hooked me up to I.V., strapped my arms to the table and belted me to the table as well, administered the drugs to put me under, used this tool, that knife, this piece of equipment....etc, etc. I'll take 5 copies of that please! How much?, don't worry Tim just take it! Nice, now were cooking!

To say I was elated with this development would be an understatement. Now, I was going to "get even" with the union National Rep. No, I was not going to take this one to him, been there, done that, and it cost me! No,this time I was going piss them off by taking it straight to my employer, bypassing the union and going straight to the Labor Relations Mgr. He said he would go over it with the payroll / benefit Mgr. (his wife) and get back to me, but did not see a problem getting the weeks disability pay owed to me, as this letter was perfectly clear, I indeed did have "day surgery". No shit Sherlock!

By the time I did all the running around getting what everyone was requesting to prove my case, it was now March of 2007! Radiation, was completed, I was tired, weak, burned from the radiation and a sore nearly closed throat, and was now going to be starting Chemotherapy treatments. Chemo you say? Yep, Chemo, you see, while I was in my last weeks of radiation another "lump" popped up on my neck, which coincidentally was the main reason they even found the Squamous Cell Carcinoma, finding that was a fluke! they really were looking for the cause of the lump on my neck when they found that.

There was another surgery that took place near the end of February/07 which was another biopsy this time they got the lump and biopsied it. Low and behold, cancer number two! I was diagnosed with a T-Cell, Large B-Cell non-Hodgkin's lymphoma stage three. So all this running around for a weeks pay was taking it's toll on me with all the other stuff going on. In the end, I WON! I got my weeks pay.

Determination, real, determination, they were not going to beat me, and they didn't, I proved my point. Now, this is where some may question , why did I do all this for a weeks pay. Well my friends, and this is where some of you in the 1% should pay attention. I did not have a bankroll to fall back on. You see at that time, and prior to being diagnosed with cancer not once, but twice and two different cancers, I had been laid up with a work related injury from around Jan of 2005, and laid up on light duty till I had knee surgery in Dec 2005. I had only just gone back to work around June or July of 2006, and being laid up for a year, and on light duty in the office, not driving making my normal wage, we were put in a situation where we had to declare personal bankruptcy, and that is where I lost my RRSP savings, it was the first thing they took. It was not a large amount, but it was something.

So you see, that one weeks pay, was not only essential to us, but I was entitled to it, and they were not going to take it away, yes, we struggled a lot during that time, after all, it started just before Christmas! We still struggle to this very day. We are basically living day to day and month to month on these disability payments, and we do the best we can. Does it end here, nope it doesn't.

Once again my employer comes at me with a letter stating that they no longer have to pay my other benefits, prescription, dental, eyeglass, etc. Somehow, they came up with some kind of clause, not even in our collective agreement that stated they no longer had to pay my benefits! What! Here we go again.

After going through step one and step two of the grievance process they blatantly stated, tough luck! Well, this time I proved my case and we went to arbitration, and once again I WON!  Once again, determination, real, determination. Benefits were restored, and any prescription we purchased during the time without benefits were paid! Seems that I am such a liability these people will stop at nothing to try and derail me and get rid of me. This actually happened twice where they cut my benefits but I had won the earlier case in the normal grievance process. The order of this may be a bit out of sequence, because I'm writing from memory and not my notes which are more accurate. But the order of things here is irrelevant.

Is it finally over now, nope, not at all. You see, not only did I get stuck with an insurer, who by the way the company dropped for another insurer, 5 months after I went off, which left me stuck with them as a liability, there was also a clause in the collective agreement, which had been changed in the previous collective agreement prior to me going off, limiting LTD, (Long Term Disability) payments to a FIVE year maximum. Yep, a FIVE year maximum, again something done due to premium issues and profits. Our previous contract took you to age 65, or your return to work which ever was first. Well, unfortunately, I don't think that will be happening with me, so, come March of 2012 I will lose my Long Term Disability pension.

Losing that pension is going to be a big hit on us, and Brenda is probably going to be returning to the workforce then. Right now she's been looking over me the past 5 years. Without her going back into the workforce, we would have to try to survive on a Canada Pension Plan Disability pension. Let's just say that will not even cover our rent, let alone pay the bills. The bills by the way, are just the basics, no credit cards, no loans, no mortgages, none of that, that was all taken care of in the bankruptcy a number of years ago. So we are coming to a point where many decisions have to be made, we will get through it, as we are doing now, just remember, I have determination, real, determination to triumph over these battles!

You may see that I enter a lot of contests, well, that is how we get to have an evening out, whether it be a concert, a show, a hockey game, what ever, it gets us out, which is a luxury we would not otherwise be able to take advantage of.

So we are with the 99% in this world, and have learned to get through the tough times, something most of the 1% who control the world we live in, have never had to do! Now I'm not knocking the people who struggled to get where they are, but you know, the ones that had it handed to them, and care less about what happens to me or you or the turmoil they leave behind on their way up.

Although I may not be out there with the 99% occupying Senator David Croll park, in downtown Windsor, just outside city hall, I am there in thought and spirit, after all, I am living it day to day.

Just remember, when the next challenge, or obstacle to overcome is put in front of us, I will take it on, with determination, real, determination!