Stop the foot dragging and let's move forward! and an update.

Since my last update on April 3rd not a whole lot has happened as far as my battle with my employer goes. Seems to me like the Union is dragging their feet, took my almost 3 weeks to get through to our Nat'l representative who is handling my case.

In my opinion it seeps like she is looking for ways NOT to take this case on instead of looking at the facts and ways to proceed with a case to take to arbitration. I'm not sure why or what that is about, but like I said, I feel in my opinion they could be doing more and working more diligently on this case. Nothing more than the filing of the grievance at step 1 has taken place to date.*

By now if they were following the time limits set forth in the collective agreement we should have been at step 2 with a meeting held between the parties to have taken place this past Monday. That has not happened, and when I questioned the time limits, I was told not to worry about that, and that should we proceed everything would be fine as far as the time limits go. I'm worried!

I informed the rep. that if she is not interested in pursuing this case then to give me a letter in writing stating such so I can proceed with seeking legal action. She was to do some kind of research with regard to the insurance contract my LTD was covered by, and then get back to me. That has not happened yet, and I've left messages.

This is all so frustrating, especially when I truly believe that there has bee wrong doing with regard to cutting my benefits. I just want to move forward and find out where I stand legally, one way or another. I'm sure this stress is not good for my health.

Moving on to my health,  since my last update I have seen Dr. Giddings at the Cancer Centre and he has changed up my medications a bit with regards to my CIPN, (Chemotherapy-induced peripheral Neuropathy).
He has change my pain medication from a 4mg dose to a 12mg dose that will be taken every 12 hrs, and this change is meant to have the medication work over the entire 12 hr period rather than going up and down every 4hrs like the previous medication and dose did.

He had also put me on a 30mg dose of  Cymbalta once per day for the first week, then I increased to a 60 mg dose after the first week. After being on the 60mg dose for a week I developed some urination issues, not sure if it's related to the stronger dose of the new meds or not, so I called him and informed him of what was going on. It was decided to cut my dose of Cymbalta back to 30mg for a week and then re-evaluate to see if the problem persists. So far after a couple days it is still persisting, so it may be just a coincidence that this started happening at that time.

The new meds are taking time to get used to but so far I feel they are helping just a little more than my previous meds. Still too early to tell what is going to happen with them, especially since we've had to cut back the Cymbalta dose, which may or may not change back to 60mg.

So that's about it for now, just trying to figure out my next move with regard to the employer/union issues, trying to be patient and let things take their course with the union, but like I said earlier, it's very frustrating waiting for things to happen longer than I should have to, especially with written time limits!!

So if needed, I will seek legal advice, and may even try to take this story to the media, just to show people how badly you can be treated by your employer when your dealing with a life threatening illness. Also to show the public how the Government expects you to live on a disability pension that won't even cover the cost of an average rent payment. Sad really, when you look at all the "red tape" and waiting it takes to try to get your pension bumped up to help make ends meet. I may be put in the position of having to do some kind of benefit to raise funds to help us get by until Brenda can secure some form of employment which is difficult in this city right at the moment.

I also ask for your thoughts and prayers for a family member who is hospitalized in ICU right now.

Thank you,
Tim.

*Side note: I got a phone call just as I was finishing up this post from my union chairman stating that a meeting will be held between the company and the union on April 25th to discuss my case.

With A Little Help From My Friends.

Well, it's been a couple of weeks since I got that "bomb" of a letter dropped on me by my employer. Not a whole lot has happened other than a second grievance has been filed. This time for a benefit I was still entitled to as per them stating benefits would remain in place until March 31 2012.

You see, I had a suspicion they would do this to me two years ago, and at that time Brenda and I both went for eye exams and got new glasses the last week of March 2010. This was done at that particular time so that we would be entitled to our $200.00 ea.towards new glasses the last week of March this year!

But for some reason the payroll/benefits clerk (owners daughter) thinks cancer must have taken my mind away from me. Wrong! So, once again another battle. Unfortunately I can not put my hands on my copies of the receipts from that as of yet. I have found my 2010 date book, (I have them all since 2006) and we had our eye appointments and ordered our glasses on Thursday March 25 2010, the appointment was at 10:15am.

I also know we ordered our glasses and had the costs for our glasses printed up at that time so I could take them to my employer and drop them off, as it was just around the corner from where we were. I did this, I know, because it usually takes a couple of days for them to write the cheque, as they pay the benefit themselves. I do have copies and will find them, just got moved around during our move which occurred just shortly after we got our glasses that year.

Just how stupid can these people actually be. I mean really. I know they have the originals of those receipts with the dates on them, but they'll never give me a copy. Maybe if this goes to a lawyer eventually we can subpoena them!

This whole thing and the frustration of not being able to put my hands on my copies of the receipts had me at such a point I was ready to throw in the towel. But, instead something happened. I posted that I was ready to throw the towel in on one of my Facebook group pages, and that's when something, something amazing happened. My "family" spoke up and insisted I continue the fight and with their help if need be! You see this is a place where I have hundreds of  friends, and I mean friends, not just a name you clicked on to help build a farm or something, as I do not play games on Facebook. These are all friends that have been touched by cancer in one form or another, and we are there to support each other through some of the toughest times of our lives.

These friends, or as I call them, "family" rallied together on that page and wrote some amazing things telling me NOT to quit, not to "throw in the towel", they were there, and they will be there to support me in anyway they can with help, with resources, and with information and such to help me fight this battle. Amazing truly amazing how these family members can boost your spirits at some of the lowest points in your life. But they my friends & followers, understand, most or some of them have been through the same things I have and are lending their experiences of how they dealt with it.

I call them family as to me that is what they are.Most I have never met in person, but you really don't need to meet them in person, as much as you would like that, they are there no matter what, and when one of us is at our sickest or lowest, or fearing an annual check up, or having problems financially even, we are there for each other if, when, and however we can to help. I had said in my t.v interview I did with the CBC a while back when asked how it was when I lost a friend that was part of my social media network, I responded that it was "difficult, it's like losing a family member", it's very emotional like that. So that my friends and family, means I have all of you behind me, and other than my "family" members, how many of you can say you have a family that big!

So I'm digging in for the long haul, yes, this will be tough, financially, mentally, and physically, it will be trying, I'm sure there will be a "meltdown" along the way, but I have my "family" that will be there for me. Support from them to prop me up when I'm down, to them calling in their "family" if need be! lol. But this, this is more than any one person can ask for.

So, now to update you all. Not really much has happened since filing the first grievance with the union, although I believe we should have had an answer in writing from the company on that one by now, hopefully they missed the time limit, which would then be an automatic ruling in my favour. Doubtful though as the union would probably grant them an extension, don't really know why, but that seems to happen a lot. As far as I'm concerned time limits were laid out in writing in the collective agreement for a reason, they should be followed!!

Also, as I mentioned earlier, a second grievance was on Friday last week, when I was informed by my Local Chairman that the company stated they would NOT pay their portion towards new glasses as I was "too early" with submitting the cost. Not so, and Brenda and I are both 100% sure on that! We will find the receipts to prove that too. We did find the final receipt from when we picked up our new glasses when they were ready, but just need to find the receipt from the deposit and quote which is what was turned into the company on time, and they cut the cheque for. Our bank account shows the cheque amount of $400.00 going in to our account the first week of April 2010, which sounds about right, because like I said, it takes anywhere from a day or so to a week or so for them to cut a cheque, and if I recall correctly that cheque was mailed to us, so you figure out the math, seems to me all that would add up to me submitting the receipts the end of March!

Over that past few weeks I have had my appointment with my family physician cancelled twice now, so it's been about three weeks since I was suppose to see him to renew my prescription for my pain medication. This is an issue, without out it I would be in agony most days, and that will not do! I managed to get a hold of my primary Oncologist who sent in a prescription to the pharmacy for me with enough medication to get me by. I will however, be looking for a new family physician, so if any of you here in Windsor who follow this blog know of a doctor in East Windsor, (old Riverside area)  that is accepting new patients, let me know.

Spanish class went a lot better this week also, I think last week I just wasn't into it will all that was going on. We had a very productive class and discussions this week.

Don't forget April in Canada is Daffodil month in support of the Canadian Cancer Society, so when you see someone out there selling daffodil pins, or flowers be sure to purchase one!

Tomorrow is my appointment with Dr. Giddings the Palliative care specialist at the cancer centre to go over my pain and medications with him. Looking to get this CIPN, (chemo induced peripheral neuropathy) under control better if that's possible.

 Dr. Giddings will now be a part of my team at The Windsor Regional Cancer Program, along with, Dr. Kenneth Schneider, my radiation Oncologist and Dr. Sindu Kanjeekal, my medical Oncologist,  Kit McCann, nurse practitioner, along with Nancy Hannon, my social worker and Donna Danelon my dietitian, and not to forget all the wonderful and caring  nurses at the centre as well as the staff and volunteers of The Windsor & Essex County Cancer Centre Foundation.

Thanks to everyone for their words of support and encouragement as I battle through these obstacles, without which I might have thrown in the towel. This will play on my health, but it's an obstacle that I need to challenge as I truly believe I am right and entitled to my health and dental benefits, as well as our eyeglass benefit. 

This whole thing is being done purposely and maliciously and they are hoping I will throw in the towel. NOT NOW! as the heading of this blog says, "It's on, like Donkey Kong!". I WILL take this on with all I have and with the help of others. 

Volunteering at the R.V. Show
at the Cancer Foundation booth.

Also of note, I am part of the "Featured Story" in this months newsletter and Home page of The Windsor & Essex County Cancer Centre Foundation. How cool is that!

Stay tuned! it should start heating up this week when I start to push the grievance procedure time limits.

A Bomb!

Well, the hell I was hoping I did not have to go through with my employer is on. I received a letter yesterday (March, 21 2012) from my employer which not only informed me that my portion of  LTD coverage with their insurance carrier was ending, but further went on to say they were going to discontinue all other health and dental benefits I now get through my Greensheild coverage with them. Which I figured may happen but was hoping  I would not have to fight for that.

As if that is not enough, they went on further to terminate my employment with them, all effective March 31, 2012. Nothing like having eight days notice of all this.

To say I'm angry and upset at this would be an understatement. I can not believe the control I'm keeping right now, and it's not easy! I spent most of the afternoon on the phone yesterday, first call was to the company's new Labour Relations Manager, to inform him I wanted a meeting with him, senior management and the union a.s.a.p. I then tried to call the Local 195 V.P. who handles issues with my employer. I left a message as he was unavailable. He did however call me back later. I also called one of my union reps and my local chairman as well. Both were unavailable but got back to me later in the afternoon.

Firstly the Local V.P. said he would be in touch with our National Representative and would get back to me. My union rep returned my call and I discussed the letter with him. He said he would contact our chairman to get a hold of me. Shortly later my chairman called, I filled him in, he said he had gotten a copy of the letter,  also I requested a copy of our latest bargaining agreement, which I did not have. He said he would come over personally and deliver it and discuss things.

So after all the discussions, it is now a waiting game. We have to play out the procedures and time limits prescribed within our collective bargaining agreement. Firstly, I'm trying to get a meeting to sit down with all the parties to try and resolve the matter. I feel personally this step is usually just a waste of every one's time, as this company is known for doing what it wants, even when it clearly violates the collective agreement. There position is usually always the same, we'll do what we want, and you can grieve it. Sad, but unfortunately true.

I have informed my chairman the he can go ahead and file a level 1 grievance on my behalf as well. From there I expect the company to do it's usual thing and deny the grievance, at which point we will refile with a level 2 grievance, which again requires all the parties to get together to try and resolve the issues at hand. At that point if it is not resolved to every one's satisfaction, then a decision will be made by the union, if the case at hand has merit to proceed to an arbitration hearing. With all this we are probably looking at about a month in time, then however long it takes to get an agreeable date with all parties for a hearing. This could take up to a few months. I will ask for an expedited hearing due to medical reasons. We shall see.

I have to add here, I knew I was losing my LTD payments the end of March, I also had a feeling they would cut all my other benefits as well, hoped not to have to have that fight, but so be it. The real bomb here was the  termination of my employment. How the hell do you terminate someone who is off on a long term disability, yes they can cut my payment, but no where in the collective agreement does it say they can terminate my employment. Maybe I'm living in some kind of la la land, but if anyone out there sees a reason or cause why they can terminate my employment, please fill me in.

Ironically back in March of 2009 I went through an arbitration hearing for these very things. They had sent me a lay-off notice at that time and also informed me they would be cutting my Greenshield benefits then as well. Only difference here is, is that my LTD benefit portion from the insurance provider has ended. My opinion is that yes, my LTD payment portion from the insurance carrier has ended, however I am still in receipt of the LTD benefit portion paid to me through the Canada Pension Plan Disability benefit, which means I'm still in receipt of LTD benefits, just a reduced benefit now.

I believe it was also back around 2009 that I applied for and was approved for the CPPD benefit at the urging of the company and the insurance company, supposedly to reduce premiums and for the insurance carrier to pay a reduced amount, as they could deduct100% of what I got from CPPD, which in turn meant I still received the same amount every month but it now came from two sources, but still considered to be my total LTD benefit.

Therefore it's only reduced, not gone, and therefore I believe I am entitled still to my other benefits and my status as an employee on LTD.

To say this turn of events has been an emotional roller coaster would be an understatement. To go through the list of emotions here they are, Anger, shock, distrust, fear, disbelief.... This is a case where they don't only kick you while your down, but keep kicking you till they've taken it all away from you and left you battered and bruised.. I can still remember a heated conversation with the past HR manager at the company and I asked him how the hell he looked at himself in the mirror in the morning with a clear conscience when he treated people in the manner that he did. I got no response what so ever.

This case is so similar to the 2009 case, I can't see how we won't proceed all the way to arbitration again, and who knows maybe things are different and this can all be worked out before it gets that far. I have very little hope of that. Been down this road before and know how this company works.

In the mean time, Brenda is still looking for work, and that has not gotten any easier since the Ontario Government has announced the closing of the OLG Slots at Windsor Raceway which is putting over 200 local people out of work and looking for employment as well.

Just never seems to end, I've faced everything thrown at me in the past eight years, and have gotten through it, but I have to say, It's getting tiring, and I don't know what's left in the tank. I know my emotions are all fired up, but that in itself is draining. This has just been one thing after another and not just with my employer but other things as well.

So, I will prepare as best I can to saddle up, muster all the support that I can, and ride into battle once again to fight for something that I truly believe I am rightfully entitled to. Wish me luck!

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/