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!

Once a Cancer Patient, always a Cancer Patient?

So, a bit has happened since my last blog post. On Tuesday October 4th I seen Dr. Gupta at the Cancer Center. Dr. G. is new here at our Cancer Center in Windsor, ON. and is currently filling in for my regular oncologist, who is on sabbatical.


Dr. Gupta graduated from Government Medical College in Amritsar, India 2003, completed her residency in internal medicine at Wayne State / Detroit  Medical Centre (DMC) and her Fellowship at Barbara Ann Karmanos Cancer Institute. She is a member of the American Society of Oncology and Hematology (ASCO), American Society of Hematology (ASH), American Association of Cancer Research (AACR) and the American Medical Association (AMA). Dr. Gupta joined the Cancer Program in 2011 and her specialty areas are breast, lung, hematology and gynecology.


She seems good at what she does. She had researched my history before I seen her and had familiarized herself with all I have been through. She also gave me a full check up, and spent time checking my abdomen, I had told her about the pains I'd been having. She said she did feel something that did not seem right but, she stated that there was nothing showing in the C/T, ultrasound, or x-rays that I had done two weeks prior.

I also informed her that I would be seeing Dr. Peer, an internist later that same day. I have to say, I was impressed with the time she spent with me.  When I asked if she was here to stay, she stated that she would be here for a least a year, and then take it from there.She had even called me back the next day with an answer to a question I had asked at my appointment.

Later that same day, the 4th of Oct. I seen Dr. Peer. in the afternoon. Again another appointment I was impressed with. Dr. Peer, also was very pleasant and took the time to listen to my concerns. We sat down in his office for a consultation first, followed by a full exam, and then back in his office to discuss things. After I brought him up to speed on my history, he said that he would like to have me in for the colonoscopy A.S.A.P. and to see his booking secretary to book the procedure.

The booking secretary stated she had an opening for this coming Tuesday October 11th, but with it being Thanksgiving weekend here, she did not want me not enjoying the festivities, so she booked me for Friday the 7th October, which meant I had to start the prep immediately! So having had a bowl of cereal and a coffee and donut in between appointments, that was going to be it, nothing more to eat until after the procedure on Friday. She then gave me a prescription for Pico-Salax to get the ball rolling so to speak.

Oh what a joy the next three days were, besides the fact of nothing but fluids for those days, there were of course were the other effects that go along with the "clean out" process. Friday could not come fast enough. From the time I started taking the Pico-Salax Wednesday afternoon, the parade was on from my perch here in front of my laptop, to my throne in the other part of the apartment. I think I wore a path in the carpeting!

Finally, Friday the day of my procedure was here! Brenda had me at Windsor Regional Hospital Met Campus for 8:00am. My appointment was for 8:30am and I was told to check into admitting for 8:15am. After getting checked into admitting we headed down to the Endoscopy area on the lower level and got checked in there. After about a half hour wait, I was called to the window and given a questionnaire/history paper to fill out and consent form to sign.

I was about another twenty minutes or so before I was finally called in. Once in the wait/recovery room I changed into one of those wonderful hospital gowns and hooked up to an IV. Of course once all that was done and I laid there for about five minutes, I had to go! Couldn't have happened before I was all hooked up and had to drag a pole into the washroom with me. Once back on the gurney, it was about another twenty minutes or so before the nurse finally come and wheeled me into the procedure room. A shot of conscious sedation and the procedure was under way.

I did mange to watch most of the procedure on the monitor. We were not far into the procedure when there it was, a dreaded polyp! The damn thing looked huge on the monitor, but of course it was magnified, and when I spoke with the nurse later back in the recovery room, she stated it was "just a tiny one", but would still be sent away for pathology. No mention, nor do I remember much more from during the procedure, about what might be causing my abdominal pain. Just some paper work about polyps and told to call Dr. Peer for a follow-up to go over the outcome of the procedure with him in three weeks.

First things first, as soon as we got to the hospital lobby, it was straight to the Tim Horton's counter for a coffee! Ahhhh, now we're talking.  I was so dry I was spittin' sawdust. From there we headed home, and soon as I got settled back at home, it was time for a bowl of Multi-Grain Cheerios! Food once again!

To go back a bit, to while I was waiting, one of the nurses from the chemo suite at the Cancer Center walked by and said hello, and sorry to see me there, jokingly of course, referring to being in the Endoscopy waiting room, then, once I was inside and being wheeled into the procedure room, another familiar nurse from Four West, Oncology unit said hello. I guess she's working down in Endoscopy now. Once I was in the procedure room, I had heard her say to one of the other nurses out in the hallway, "Tim is one of my old oncology patients from when I was on Four West".

That brought me to pondering a thought as I was writing this post today, is it really true?, Once a cancer patient, always a cancer patient? I believe that may be true of most cancer patients, from talking with survivors and patients alike, I've found that most agree that there really isn't a day that goes by that you don't think about, all the tests, results, what's next, or worrying about every little ache and pain and wondering, is "it" back?

Speaking for myself, I don't think there is a day that goes by that I don't think about "it" either. The little or big pains, the tests, the Dr. visits. It all adds up to always being just that, a cancer patient. Of course for me that is true anyway, I am currently still a cancer patient, doing the watch and wait thing, but I speak of others out there, that have discussed the issue with me of always being a cancer patient, the worries about "it" being back.

So today, I put that all aside, or at least try to fool myself I did, and save that for another day. Brenda and I, along with her mom and brother will be celebrating Thanksgiving, and giving thanks for our lives, and all that is a part of them. So from our table to yours, I wish you all a very happy Thanksgiving, enjoy.

Follow up & a Bonus.

 Thanks to everyone for all your comforting and at time hilarious responses to my last post on here. Since that post things took a few more days to "get moving" and seem to have leveled off for now. Not sure what that was all about, but hope to get some answers soon.

 It was not a fun week by any means, and I can't count all the medications I took to get things moving again, but I am glad to lay off of them now. I am again eating somewhat normal, so we will see how it goes over the coming days.

 I will be seeing a "new" oncologist at the Cancer Center next week, Dr. R. Gupta. I've heard good things, and as my regular medical oncologist told me," it might be good to have a fresh set of eyes" look at my case. I agree, and look forward to seeing  her.

The same day, later in the day, I will all be seeing Dr. Peer a local Internist, for consultation for a colonoscopy, If I recall correctly, it's been about three years since my last one. Probably overdue I guess. I recall my last colonoscopy by a different Dr. and woke up during it, thought the probe was going to push straight through my abdomen from the inside out! Hope if I do have another, they give me a good dose of what ever it is, to knock me out!

 This Saturday night is going to be a night of entertainment, courtesy of my friend and former co-worker/landlord, Deb Palmer. About a month or so ago during a conversation we had I mentioned Roger Daltrey was going to be in town at Caesars Windsor to perform The Who's Tommy. The next thing you know I have tickets to see this "historic" event. Wow! Last October Brenda and I got to see Roger Waters perform "The Wall" live in Detroit courtesy of Brenda's Uncle Tom, and now this October, "Tommy", courtesy of Deb! Thanks Deb, we are so thankful, and looking forward to it!



It's nice to have such caring, and generous family and friends! Living on a disability pension is another obstacle  in itself! It is very hard living payday to payday, but we do it, and like I said, thanks to the generosity of family and friends, we get to enjoy these outings and getaways that we would not otherwise be able to do! So again, thank you everyone, we are very appreciative of your generosity. Now, just to win some more contests! I'm in a dry spell this year, and hockey season is upon us. Last year I did well winning tickets to Windsor Spitfire games.

 This week has been an extra special one with the release of all the newly remastered Pink Floyd material, all I can say is, I've died and gone to heaven! If you haven't already you must check out Why Pink Floyd? and see all of the material and box sets now available. I have to say, two of  those items are on my Birthday/Christmas wish list, The Dark Side of The Moon Immersion Edition, and The Discovery Edition Box Set, which is all 14 of their albums on CD remastered! Check out the short video below outlining all that's available, along with some of the best music in the world to listen to while you watch! Enjoy.



 As a lot of you know, and if you don't, you do now, Pink Floyd is at the top of my all time favorites list, and will always remain there. This is the music that helped get me through some of my toughest days while waiting for, and during treatment. My mp3 is loaded with only Pink Floyd, hours and hours of it!

 As an added bonus I leave you with, Roger Waters performing with The Foo Fighters on Late Night with Jimmy Fallon this week. Until next time, Enjoy!

The Interview:



The Performance:

It's a "Crappy" world I live in! and a P.S.

    There's been a lot going on since my last update. After my Oncologist visit last week I got a call the following morning with my C/T appointment, which was Monday afternoon, and not a moment too soon. The pain in my abdomen and lower back became all most unbearable! It really kicked up a notch on Friday and continued to get worse throughout the weekend. Monday could not come fast enough.

     I was pretty much in agony on Monday and was glad to get the scan over and done with. Maybe this would shed some light on what was causing all this pain and being uncomfortable. By Tuesday the pain had again doubled, abdomen, lower back, right hip. By Tuesday afternoon enough was enough. Off we went to the Emergency Dept.

     After about an hours wait, I was finally called in. I informed them of the level of my pain and where it was and told the nurse I really needed something for the pain. What I had been taking (Hydromorphone) was not enough, it was not even touching the pain at this point. She then proceeded to insert a shunt for blood work and any possible IV's.  Good luck! the day before when the tried to put in a shunt for the contrast for the C/T scan, it took them five trys before finding a vein the could get flow in and out of!

     This day was going to be no different, four trys before they found one, I say "they" because a couple different nurses tried, as was the case the day before as well. After finally getting a good vein that worked the took the blood samples, and the nurse said the Dr. would be in soon. After some time the Dr. finally came in, poked and prodded and asked questions. After informing her of what has been going on and how this has progressively gotten worse of the past couple months she left the room to go order an ultrasound. I also informed her before she left the room that I had gotten nothing for pain yet and to please get me something for  pain.

     A few minutes passed then a porter came in to say he was taking me to ultrasound, after wheeling me down to ultrasound, I was parked in the hallway outside in the waiting line, thank goodness only one other gurney ahead of me! It was about fifteen minutes before the technician finally came out and wheeled me in, she did the ultrasound, took many stills, then wheeled me back into the hallway in the lineup to got back to E.R. It was about five minutes when the porter returned and brought me back to E.R.

     After getting back the nurse came in again shortly after returning and I again informed her I really needed something for pain, please! She replied, "no one gave you anything yet", no they haven't. She went off and came back with a syringe of pain relief, finally! It was about five minutes later after getting the shot that I started to feel some relief.

     It was probably another twenty minutes or so that the Dr. came back in and said she was going to send me down for x-ray's now. The same porter was there within minutes and took me down the hall for x-rays. The nurse asked if I was able to get off the gurney on my own and make it over to the x-ray table, to which I replied sure! After sitting up to get off the gurney I thought it best I take a second or two to gain my bearings before walking the few short steps to the table, the pain drugs were kicking in full now.

     Shortly after getting back from x-ray the nurse came in and asked "if the pain was gone or if I needed more medication for pain". Since the pain was not completely gone, I replied, "no the pain was not totally gone" and asked for more, after all I still did not know how much longer I was going to be there. I am sure most of you know just how comfortable those emergency room gurneys are right?  NOT! 

    It was when the nurse came back in with my pain medication that she informed me they would have to take more blood for blood work, when I asked why, as this had already been done, she informed me that I came out so slowly the first time as they did not have a good enough line in, that it had clotted and they needed more to redo it. The nurse from the lab had followed her into the room so she took blood, then I got my pain shot. 

    So that means that I will be there at least another hour to get the blood work results. As we had been there about three hours now and it was around six thirty, Brenda was getting hungry, and it was decided she would go home for a bowl of soup, as the hospital cafeteria was most likely closed now. So Brenda left to go home to get a bite to eat. Not a minute after she leaves the room the Dr. finally comes back in and says after looking everything over, they noticed my bowel, and intestine were "full", and she was going to give me a prescription for CitriMag, make a referral to see and endocrinologist for consultation for a colonoscopy and send me home, when I asked if that was going to be right now she said yes. 

     I immediately called Brenda hoping to get her before she left the parking lot. She was in the car but had not left yet, so I told her to hang on a few minutes and wait, I would be out shortly as I was done. After getting dressed the Dr. and nurse came in with my prescription and referral paper, unhooked me from the B.P. cuff and took out my shunt, and I was on my way, hopefully this is the answer and end to the pain.

    

      After getting in the car, I informed Brenda that they had finally after looking at everything came up with the diagnosis that I was "full of shit" literally! She chuckled and said I could have told the Dr. that, all they had to do was ask! lol. Anyway, I told her they said everything was full, backed up and we needed to stop at the drugstore on the way home to get my prescription. 

     

      So, after taking a full bottle of CitriMag, doing it in thirds four hours apart, you'd have thought that would have worked. Nope, a got out very little with that and mostly gas! Unreal. So I called the hospital back the next day to tell them it did not work, and should I try another bottle, all I got from them was if I feel it did not work I should come back in. Since I did not want to do all the waiting again I called my home nurse and asked, he told me it could not hurt so go ahead. I did. I went and got another bottle and this time took it half and half. Half right away and the other half four hours later. I again had "minimal" success with the second bottle!! WTF!

  

      Next morning, yesterday, I call for an appointment and get in to see my G.P., I informed him of the happenings of the past couple of days and ask him if he could prescribe an enema from me. He gave me a prescription for two enema's, I left, stopped at the drugstore to pick them up, The woman at the pharmacy counter was in disbelief the two bottles of CitriMag did not work!  I got my prescription and headed home. Shortly after getting home, my home nurse arrived and did my normal check up and I showed him the two bottles I just picked up. He did not seem to think I would have much success with them as that only cleans out the bottom end of the intestine, and the CitriMag probably did not do anything for the top end.

      After my nurse left we did the enema, again, got very little out from that!! What the heck. Later in the afternoon I finally had a movement that was "something" more that what I had been getting. Still nothing big enough to think I've emptied the top half out. I called my oncologists office to see if they could call in a prescription for Lactulose which my home nurse had suggested might work on the top end stuff if the enema did not work. Later in the early evening I called the pharmacy to see if the prescription was ready, I found that they had never called it in!                                                                                                                                                

      This morning after having a very uncomfortable evening, I called the pharmacy that is located in with my GP's office and asked them to have him fill a prescription for me for the lactulose. I am currently awaiting a call to say it's ready, should I not hear from them by twelve thirty, I'll be calling back to see what's going on, before my GP closes at three o'clock.

   

     So, I continue the vicious cycle of taking pain meds for the pain, yet bind me up, and then taking everything on earth to try and get things moving again. I have to say, after all I have been through with chemo, transplant, radiation, etc. This has to be the worst in my life I have ever been backed up, not fun, a lot of pain, abdomen, back, right side. I would think if there was an obstruction they would have seen it somewhere in all the imaging they did, C/T, ultrasound, x-ray, and the blood work must have been OK, I did not get any phone call saying otherwise.                                                                                                                            

     So, again, here I sit, doing my favorite thing, waiting! 

P.S. Just to add, as the ER Dr. had a chance to see my C/T results and report from Monday, and she told me that the good news was the C/T did not show any "substantial" change with regard to my cancer progression. So there was some "good" news to all of this!

    

World Lymphoma Awareness Day 2011 and My Appointment.

Me, Shannon,(Tim Horton's Mgr) and my Uncle Don

This year the timing of my next follow up appointment with my medical oncologist, just happened to coincide with World Lymphoma Awareness day. The day started as usual with my morning coffee with my Uncle at Tim Horton's, but that was it today, no walk.

My appointment at the Windsor Regional Cancer Program was for 9:15am so I had my Uncle drop me off there just after 7:30am. Yeah, I know sounds a bit early, but normally would not have been. The lab opens at 8:00am, and, I thought, I was suppose to get blood work done before my visit with the Dr. Nope, no blood work today, not in the system. I was sure I was to get blood work every 3 months but apparently not.

So yes, I was indeed very early now. There was other things I could get out of the way however, like doing my ESAS on the computer, getting my pager to be called with when they are ready for me, and then drop off the ESAS printout and Dr's paperwork at the Pod A desk. I also took this time to go and weigh myself for the Dietitian whom I would see after my Dr. appointment, also there was an appointment with my social worker afterward as well.

While waiting I went into the Patient Resource Library and looked up some things on line, and checked out what new books were in. It was while I was in there that my pager went off! What? pager? already?, Not to knock it but this is probably the earliest I have ever gotten in to see the Dr.! Nice. Well maybe not, Brenda is not here yet, as it is only 8:45am and my appointment was for 9:15am so she was on her way but not here yet.

Well, don't get too excited, it was just my primary nurse calling me in to do my vitals and go over my ESAS and any new concerns. Yes, there were new concerns, concern about this lower abdominal pain I have been having. I told her I had seen my family doctor about it, and that he had it pegged as Irritable Bowel Syndrome. I told her that after taking the medications he gave me with no results, I quit taking them. There had been two different medications he had me on, first was Dicetel, and after that did not seem to help he put me on Donparidone which did not help either. I also told her I would not leave today without a scan or ultrasound appointment. We need to get to the bottom of this.

It was while I was in the examination room waiting for the Dr. to come in that Brenda finally arrived, whew!  You see, with my memory the way it is, chemo brain and all, I really need her there to take notes and remember what was said, because I know I would never remember, or at least screw up what was said. That is how I got here early in the first place, something I thought the Dr. had said in the past, but didn't of course.

When the Dr. finally came in she went over the primary nurses notes with me and asked me to jump up on the table to examine me, and then lie down to check out my abdomen. After poking around for just a bit, she hit the spot, the spot that when pushed on feels like someone sticking a knife in me and twisting it. Yeah, OK, I walked into that one! But there it was, the spot that causes all the pain and she found it. Although she does not believe it to be lymphoma related, she is ordering a scan to have a look, just to make sure, she does not want to rule anything out at this stage.

She also felt that even though there was a decrease in one of the nodes on my neck, she felt there was a slight increase in size on the ones under my chin and on the side of my jaw. She has also ordered blood work for the follow up visit for the scan results when I get them. The Dr. also informed me that she would be going on a three week sabbatical, and she would put me in the hands of a new oncologist at the cancer center, Dr. Gupta. Dr. Gupta has come to us from the U.S. where she was before us. It was also agreed that I might just be good to have another set of eyes and opinions on my case. I agreed that I would see Dr. Gupta in her absence.

So, folks, that pretty much leaves us where we are now, in a holding pattern waiting on appointment dates. I think I will give diagnostic imaging dept. a call in the morning to go on  a cancellation list, unless of course they are getting me in quickly anyways.

I've also pretty much put out all the information I can for Lymphoma Awareness Day. Hopefully this year we have gotten the attention of the Governments to recognize the urgency for Lymphoma Awareness, and the funding to bring some of these new chemo medications on board and to get out the message to young adults that early detection of symptoms is the key to getting a chance at having Lymphoma treated as a chronic disease much the same a diabetes.
Hope, it's something we have right?

So I leave you with love, hugs and the links to information on Lymphoma. and Lymphoma groups, If you have any to add just email me! thanks,
Tim, xxx

http://lymphoma.ca/
http://www.lymphoma.org/
http://www.lls.org/
http://www.nlm.nih.gov/medlineplus/lymphoma.html
http://www.mayoclinic.org/lymphoma/
http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/lymphoma-myeloma/index.html
https://www.facebook.com/pages/Lymphoma-Resources/116254281762523
https://www.facebook.com/pages/Anas-Younes-MD/119508836687?sk=info
https://www.facebook.com/Hope4Cancer
https://www.facebook.com/groups/thelymphomaniacs/?ref=ts
http://www.cancer.med.umich.edu/news/kaminsk.shtml

Funk Therapy.

I'm in a "funk", just not knowing what to do, how to move on, how to get out of it basically. As you've probably noticed I haven't written on here in a while. I have written just nothing worthy of posting on here till today. I figured maybe writing about not being with it might help get things moving along. It seems to have worked! I'm actually writing something to post. 


Since just before going up north last week I really have not felt well. Having these terrible abdominal pains has had me not in the mood for much these past weeks. I've been to my family doctor twice now and he seems to believe it is bowel issues. I'm not convinced it is, however since I've been back from vacation and went to see him again, he gave me more meds, and these seem to have given me some relief, or is it just coincidence?


I'll take this bit of relief for what it is right now. The week we were up north I spent about forty percent of my time there in bed! Even with that I still had a good time and enjoyed the peace, quiet and tranquility of the lake. The outings we had were enjoyable and really enjoyed the country side up there, including the big bear at the dump! The outing on the lake on the Friday before we left was very enjoyable and the scenery was fantastic.

I had time to reflect on a lot of things while up there and still, just not sure on what direction to take next. I have several things on my plate right now and not sure what to do with most of them. I guess I have to get through this "funk" and then maybe I'll be able to move forward and start to get some of these projects done, some of which are time sensitive. I have not even begun to make my ribbons to hand out for Lymphoma Awareness month! This has been a year tradition for me these past few years, so I guess tomorrow I'll have to get busy with that. Maybe that will get me moving with the other projects as well.

Then there is the health issues. This abdominal thing has my mind going, although these past couple days have been better. I still have to figure which way I am going to move forward with regard to treatment options. That one really has me stuck in the mud. Even though I have had the opinion of four oncologists this year so far, three of which have the same opinion, I still the option of further opinions as well. Do I want to go there? Not sure, not sure if that would be the right move or just put me in a bigger spin. It is something I still have under serious consideration right now. Soon, real soon, I will make my decision on that course of action and finalize which direction to move forward with.

Me and Megan

Brenda with Megan

To move beyond all of that stuff, there has been something that has put a ray of sunshine on everything, and that was the birth of my granddaughter Megan Carol-Lyn Mayer, who was born on Wednesday August 31 2011 at 7:14 pm and weighed in at a whopping 9lbs 3oz and was 21in. She is just adorable. Mommy and baby went home today, after spending an extra night in hospital after it was found she had a little jaundice. All is well and they are home now, Brenda picked them up this morning to take them home.

The weather this past couple days has been hot, humid and unbearable to venture out into. The Harrow Fair is this weekend but not sure I want to spend that much time out in the heat, unless of course it cools down a bit by Sunday. Last Sunday we attended the annual Tecumseh Corn Festival which I have not been to in at least 15 - 20 year ago. Had a blast ran into friends there, just really enjoyed taking it all in, and then of course there was the corn on the cob! Um mm Ummmm, was sweet and delicious!

So overall this year has been great for outings, been a long time since I felt well enough to do all of this. And I have to say the majority of our getaways have been thanks to some wonderful generous friends and family without whom this enjoyable summer would not have happened. Still have one big event to attend, again thanks to the generosity of a long time friend, Brenda and I will be going to see Roger Daltrey perform Tommy and Caesars Windsor next month, can't wait! Two classic rock shows, two Octobers in a row, thanks to the generosity of family and friends! You guys are the best.

So, now that this is something I have finally written and will post, it's time to start moving forward with some ribbon making beginning tomorrow. Writing can be wonderful therapy at times, and thus this blog.

A Plea from Lymphoma Foundation Canada.

 The following is an email I recently received from Sue Robson, Executive Director at Lymphoma Foundation Canada. They need  your help.  

If you reside in Ontario (Canada) and have Follicular Lymphoma (FL) and are currently in need of or could benefit from Rituxan re-treatment, but can't get it because it's not covered in Ontario, then they need to hear your story now.

If this is you or anyone you may know please contact Sue Robson @Lymphoma Foundation Canada. Contact info is below.

Thank You,

Tim, xxx

Dear members, 

We are reaching out to you today to let you know about the inequitable access to care for people living with follicular lymphoma (FL) in Ontario, even after they have been successfully treated.

The issue:

Right now, FL patients who received a treatment called Rituxan plus chemotherapy when they were first diagnosed and who responded well to initial treatment are being denied Rituxan, the standard of care, following a relapse. The only available and publicly-funded treatment option for these patients is chemotherapy – an option that is not equivalent to the standard of care in the rest of the country. Conversely, other FL patients in Ontario who previously received Rituxan alone after diagnosis are eligible for publicly-funded Rituxan again if they relapse.

LFC’s work to date:

Since November 2010, LFC has been actively working with the Ontario government to find a solution to the retreatment issue and its impact on Ontarians living with FL.  To date, there is still no confirmation of next steps, despite positive moves made to improve access to cancer treatments through the province’s new Evidence Building Program (EBP), announced in May.

In the meantime, lack of access to Rituxan retreatment is preventing FL patients in Ontario the opportunity to receive a treatment that increases their chance of living life disease free.  This issue can’t continue to be placed on the backburner and must be addressed by the Ontario government now.

How can YOU help?:

Share your story! If you, or someone you know have FL and have been or are currently being denied treatment with Rituxan in Ontario, we want to hear your story.  For more information, please visit: http://www.lymphoma.ca/rituxan-funding-in-ontario or contact me directly by phone at 1-866-659-5556 ext. 4 or email: sue@lymphoma.ca.

Sincerely,

Sue Robson
Executive Director
Lymphoma Foundation Canada