Friday, August 31, 2012

Face to Face Campaign from The Hospice of Windsor & Essex County Inc.

It's that time of year again for The Hospice of Windsor & Essex County Inc. Face to Face Campaign. It's very simple to donate and it's only $10.00.

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All you have to do is click on this link (https://www.onlineregistrations.ca/facetoface/list.php) Look for my name on the list to donate in my name which appears as Mayer,Timothy - Windsor. That's it! Simple right!

Please feel free to copy and paste the link and my info to any of your pages. I'm only required to collect $10.00 from 10 people, however participants like I may collect as much as they can, so share, share, share!

My goal is to try to reach $500 by the end of the month, and beings you can donate in my name on line, and my blog here goes world wide, I should have no problem reaching my goal or more! so please share my link above and let's make this GLOBAL!!

Thank you so much for you donation to this,

Timothy J. Mayer

Tuesday, August 28, 2012

Adoption, Summer Fun, & an Update.

Yep, you read right, adoption! I along with friend, author, and advocate Betsy de Parry who is also a member of my group on Facebook "The Lymphomaniacs"  (it is a "closed" group) have been working over the past few weeks with the people at Jungle Island in Miami, FL. to adopt one of their Orangutans by the name of Peanut.
Peanut! 

Peanut is an 8 yr old female with a twin sister by the name of Pumpkin. Peanut is not your "average" Orangutan by any means. She is indeed special, especially to us with Lymphoma. You see Peanut has non-Hodgkin's Lymphoma as well and is currently undergoing chemotherapy treatments, much the same as what a human would get in the way of chemotherapy.

We have adopted her as our "Mascot" on "The Lymphomaniacs" page where through her handlers we will be cheering her on and sending our wishes for successful treatment of her non-Hodgkin's lymphoma.

Dora in Portland, OR. with fellow
Lymphomaniac Ellie Marx.
Next up I have to mention that friend and also fellow Lymphomaniac Dora Waddy has taken to the rails and is travelling via Amtrak across America collecting smiles and spreading the word about Lymphoma. This is all a part of her "Dora's Lymphoma SMILE project".

Dora with the Southern California
Lymphomaniacs group! 
She will be spreading awareness about Lymphoma throughout her travels and along the way meet up with fellow members of The Lymphomaniacs as she has already done in Southern California, Portland Oregon.... and many more stops to come along the way. She will be here in Windsor,ON from September 1 -5 to meet up with The Lymphomaniacs in this area making day trips within a days drive of Windsor to meet up with others as well. I am looking forward to meeting her myself!

On to some of the summer activities Brenda and I have done. One was the 2nd annual Rib Fest at the river front plaza. Good time and way too much food as usual, even with the little I had it was too much and there was left overs for days!


We also seen a concert at the Chrysler Theatre at the St.Clair College for the Arts, a week ago. We seen Lighthouse live, these were tickets I won through a contest with the St.Clair College Alumni Assoc.

Check out the Stilt Guys on the
Right side of the photo @
Tecumseh Corn Fest.
Finally to this past weekend we went to the Tecumseh Corn Fest were as usual I had to have some of that always delicious corn on the cob. Um um good, best corn on the cob yet this season!
This was followed by a Barbecue and Birthday party at my brothers place for his girlfriend and her daughters Birthdays! Again, good food, good times, and a belly ache. I could not even finish one, yes "one" hot-dog! Which leads us to the update on me.

Last week I called my Oncologists office to say something is just not right, I've now as of today lost 55 Lbs since the beginning of June! No real appetite at all, thus the weight loss of course. The weight loss combined with the "spots" that showed up in my lungs on the last C/T I had in June now, after much research, have me concerned that this might be transforming from a low grade to high grade lymphoma. If this is in fact so, treatment needs to begin a.s.a.p.

I also think there will need to be a surgical biopsy of the lymphnode on my jawline, which is most visible and probably the easiest one to get at. Once removed it should be send for a "full" lymphoma work up to in fact determine if it is indeed transforming or not.

Today (Tues) I had the scan, and this will be followed up with an appointment on September 6th to go over the results with my Oncologist at which time I will ask that the surgical biopsy be done as well. That pretty much brings things up to speed with all that has gone on these past few weeks.

Hope you are all continuing to have a great summer, staying safe and enjoying your time and travels.







Thursday, August 9, 2012

Rough couple weeks, and a Check-up.

I find it difficult to have to start off with the passing of a couple of great people who were friends.

The first I would like to speak about is a person who was taken from us way, way too soon. I know the young woman through her mother and Facebook friend Liz Schroeder Anderluh from Chicago area. I had followed Liz's daughter Shea's journey with Hodgkin Lymphoma since the beginning which was August of 2008 at the young age of only fourteen years old.
Shea's great smile!

Shea was diagnosed with Nodular Sclerosing Hodgkins. Shea's journey with this had many ups and downs, Shea even took advantage of a couple of different clinical trials to try to find the treatment that would send her to the road of remission. That wasn't to be and in the end, after many many setbacks, Shea's body was just too weak to fight off a virus that she had contracted. Shea passed away at home peacefully surrounded by her loving family at her side on July 25 2011.

Shea always, always had a great smile no matter where she was in her journey. Even during the worst of times Shea always had a smile. That will be what I remember most about her is her always warm smile. May you rest in eternal peace Shea.

I had the opportunity to stay at one of Shea's favourite places, and that was her family's cottage in Michigan. Shea's parents were gracious enough to let us stay at their cottage for a week back in June of last year. Having stayed there I seen how that was her favourite place, so peaceful and tranquil. See my blog from that stay back in June last year; "For Four Days I Forgot".

Donations to Shea and the Anderluh's favourite charities would be welcomed. They are as follows;

1 - Shea Anderluh Medical Expense Fund c/o Chase Bank, 1 N. Dunton, Arlington Heights, IL 6000

2- Donna's Good Things, P.O. Box 5706, Evanston IL 60204.

3 - Cal's Angels, 721 Ashton Ln. South Elgin, IL 60117



Mike on one of his many adventures, deep in though.
This past week I have lost another friend and active member of my Facebook group The Lymphomaniacs. Mike Stevely. Mike passed away suddenly with his family by his side on Tuesday, July 31, 2012. Mike was too young as well at fifty eight years old. Mike passed away from sudden complications related to the stage three Follicular Hodgkins Lymphoma he had. Mike was from the Woodstock Ontario area, and he liked to travel and be adventurous most recently doing the CN Tower Edge Walk! not for the faint of heart let me tell you. He was always active with the local history of the Woodstock area, another of his past times. His passing caught everyone totally off guard. Mike you will always be remembered by all who crossed paths with you. Rest in Peace my friend.
Mike doing the CN Edge Walk on May 31 this year.
It is always a difficult time when I lose friends to this disease of cancer! My cancer friends here at home and on line are all like family to me and when they pass it's like losing a brother or sister. Just wish more was being done to get to the causes of the disease. We have gotten good over the years to make treatment's a little more bearable and to make us live longer which are great accomplishments, however we need to get to the causes so we can eradicate this disease. I hope to see that day in my time.

This past Saturday we had a memorial get together and pig roast for a neighbour from when we had our trailer at the camp ground. Tim Beahan passed away in early January of this year while in Florida where he spent the winters. Tim was not a cancer patient, but in recent years had many medical issues. He passed of a sudden and massive heart attack at his home in Homosassa Springs, Florida. Was a great afternoon of remembering, food and drink! Tim would have approved!

I also had a follow up appointment with my Palliative Care Physician Dr. Giddings at the Windsor Regional Cancer Program. He was working with an intern Dr. Bergeron whom did my examination and check up today. She was very pleasant to work with. After her initial check up with me, she left the room to consult with Dr. Giddings. 

Medical Resident Dr. Sheri Bergeron and my Palliative Care physician Dr. Gordon Giddings

They both returned to the examination room and they decided that my pain medication would be slightly boosted up again. They bumped me up from 15mg to 18mg of Hydromorph Contin twice daily. We will see how that goes with getting my CIPN pain under control. I have also had some increased pain from a few of the affected lymphnodes which are now viable and palpable. I have one in particular just under my right ear lobe which has been causing me some pain at night while in bed. I lay on my right side normally and the other night I woke up a 3am in extreme agony with pain radiating around my right ear! The one just under and around my right front collarbone also can cause some pain when moving my arm in certain directions.

This pretty much wraps up the latest for now, hope you are all enjoying your summer and taking the time to take care of YOU!. Enjoy.


Friday, July 20, 2012

"Celebrating 2yrs remission!" , "I'm Cured!" .




If only. Lately I've been reading on-line of some great news from fellow survivors and patients. Some have gone into complete remission celebrating five or more years which is just awesome. Then there are others who are celebrating a year of remission.

This is were the thought comes for this current blog post. You see, I have yet to hit a year in remission since 2006 when I was first diagnosed. Twice, I almost made it. went from January to December only to find out I'd relapsed!

Currently I am in Watch and Wait and thus this has been the first time that I have gone more than a year without some sort of treatment, chemotherapy, radiation, bone marrow transplant...etc. Let me tell you, it's a celebration in itself not to have gone straight to treatment upon confirmation of my diagnosis in early 2011. Even though I almost made the decision to go ahead and start treatment right away, I decided to give Watch & Wait a chance. A chance I'm glad I took, because of my side effects and weakness I really don't know how that would have turned out.

So to look back on it all, and to look at those that are celebrating their well deserved remissions and cures, I've decided that I will take a moment to celebrate as well! Even though it's not quite two years of Watch & Wait, I have made it past the one year mark without treatment, and really missed the mark on celebrating that moment back in January.

I celebrate now! I celebrate life and the wonderful accomplishment of going more than one year without any form of treatment.

So to sum things up here, what is a reason to celebrate? Well, you don't really need a reason, all you need is the energy and the spirit to celebrate life. To celebrate your life daily, this is it, there's no going back, there's no re-takes. This is life and this is what you get. So celebrate it on a daily basis and make the most of each day.

Today I celebrate life without treatment, I celebrate life in general, and I celebrate with all those who celebrate with me!

CELEBRATE!

Saturday, July 7, 2012

C/T results, check-up, and just too hot!

Had my follow up appointment with my Medical Oncologist yesterday morning (July,6/12) and over all things went well. When she entered the examining room she had my C/T results in hand and went over them with me.

Image only, NOT my scan.
It appears that things have progressed a bit since the last C/T, but over all the nodes are still relatively small. Seems more of them are now showing up in the C/T which is matching up with what my PET scan back in Feb,2010 showed. The four nodes in the abdomen are now visible, the two nodes in the mediastinum area are still the largest of them.

She has noted something "new" that we will be keeping an eye on and that is there a a few "spots" showing up in my lungs that were not there on the last scan. I will be doing a chest x-ray in October before my next visit with her to re-evaluate at that time.

I showed her the two "new" nodes that have come to the surface and are now palpable. One is just below my right earlobe in the temple area, this one is actually quite sore to the touch as well. The other is also on the right side and in the upper right chest area just by the collar bone. This one seems to have just "popped" up in the past week.

Over all she thinks things are "progressing" as the should, and along with the tiredness all the time and weight loss, there is a feeling this may or may not be the beginning of something bigger going on. At this time she doesn't feel that it is, and thus the follow up with chest x-ray to check on the lung "spots" and blood work up, just to make sure nothing "more" is going on.

I told her I had mixed feelings about what was going to be discussed at this visit and even mentioned that if it were time to start discussions about treatment, I would put it off for a couple months as I did not feel I wanted to make those decisions at this time of year and would like to enjoy the rest of the summer before doing so. Well, I now know these decisions are not needing to be made at this time, which was a relief.

So, time to get back to summer and hope it cools off soon so we can get out more to some of the local events. There are a lot of events around the anniversary of the War of 1812 all over the area, and Brenda being a member of the Provincial Marines and their 1812 re-enactment group, she too would like to take part in more events. The temps being in the high 90's and into the 100's some days, it's just too hot.

I also have some other issues going on right now with the employer / union situation and will be focused on that for now. So will update as things move along and keep you all abreast of things medically and otherwise, take care and enjoy life!

Monday, July 2, 2012

A Heartfelt Thank You.

We would like to take this time to thank those who so generously donated to the Fundraiser on Give Forward that my friend Kimberly organized for us, and has now ended. Without you and your generosity we would be facing a bleak future over the next few months. This will help us get by for those few months, while we can only hope that some progress is made with regard to my benefits being restored and Brenda finding gainful employment in a city with the highest unemployment rate in all of Canada.

So we would like to thank the following contributors;

Kimberly Eirdosh Caamano
Daryl & Alice Compton
The Anderluh Family
Rogerman
The Morris Family
Diane Rosenburg
Vic & Sandra
Anonymous
Mia Biltstien
Maria B. Baptista
Susie Long
Dora Waddy
Sharon Edwards
Nancy Best
Maria Zippilli
Patti Spino
Glenda Landskroner-Black
Sue & Larry
Martine Niddam
Steven Shatzkin
Diane, Tom & Shelby
Don & Irene Houser
Cindy Carney
Marie Ross

Thanks also goes out to all of you that took the time to share this fundraiser on your personal and group Facebook pages as well.

To a dear and selfless friend who I only know through Facebook and have never met in person, who took the time to think about the situation than Brenda and I are dealing with and set up this fundraiser.

Kimberly Eirdosh Caamano, YOU ROCK! Words can even begin to describe how we fell about what you have done for us. You don't know us from Adam and yet you took the time to put this together to help us out. It is my hope someday, somewhere or somehow we may meet up and I can thank you in person!

As far as I'm concerned you've earned plenty of feathers toward your angel wings with this selfless act of kindness.



                                                              Medical Fundaising Made Simple


Kim, we thank you, and all the rest of you as well. In the end you raised 31% of  your goal for an on-line total of $3,093.00, there was also the mail in donations we received as well totalling $230.00 for an overall grand total of $3,323.00!! and you never know more could come and I will correct the grand total accordingly!

Tim & Brenda Mayer.

Thursday, June 28, 2012

Fundraiser ends June 30th at midnight so Give Now and help Make a Difference!


Please find below a copy of the interview I did with CBC Windsor News in November of last Year. I am re copying it here for those who have not seen it or read it, as I am now in the last two days of a fundraiser my friend Kimberly Eirdosh Caamano from New Jersey started for me a while back. The fundraiser got off to a very quick start but then kind of petered out. So I am asking one final time that if you have not donated yet or are considering a donation, now would be the time to do it as the Fundraiser ends July 1st and we are a long way from the initial target.  For those how have given and given generously I must say, I thank you from the bottom of my heart.

Please find below the "written" copy of my CBC story as well as video, and most of all the Link to the fundrasier, and don't forget to share where you can. Let's see how much further we can take this in the next 48 hours!!
Thank You,
Timothy J. Mayer

Man beats cancer four times in five years

Tim Mayer keeps spirits high, finds salvation on internet


Tim Mayer is beating some very bad odds. He has survived cancer not once, but four times in five years.


The link to the fundraiser on Give Forward: http://www.giveforward.com/helptimhammerlymphoma


A new report says the disease is now the leading cause of death in every Canadian province and territory. Latest statistics show it accounts for 30 per cent of all deaths here. It hasn't accounted for Mayer's even though he thought it would.
"You're going to die.That's the first thing that goes through your mind," he said. "And to this day, it still goes through your mind."
Mayer is still here despite a rough five years. He survived three forms of cancer four times; underwent a bone marrow transplant; and was denied experimental treatment he wanted to try in Michigan.
He celebrated each remission, every win. And then last year, when he thought he had finally won the war, his doctor called.
"It's never good when the doctor themselves call you. And she informed me that they found two nodes in my chest," he said from a chair in his Windsor home with two tumours still slowly growing in his lungs.

Life is not the same

Mayer said he feels like he just can't catch a break.
The Regional trucker can no longer work, although he thinks about it. He can no longer perform woodworking or camp — his two favourite pastimes. And his long-term disability insurance and possibly even his benefits run out in March, after five years.
"I try to live life as normal as possible," Mayer said.
The cancer, he said, has made him more caring, more willing to help people and accept help himself.
His story, although extreme, isn't unique.
According to the Canadian Cancer Society, 40 per cent of women and 45 per cent of men will get a cancer diagnosis in their lifetime.

Internet helps him cope

The trick, according to Mayer, is finding a way to cope. For him, the internet has been his salvation.
He blogs and uses social media to connect with other cancer patients who share his fears and reality.
But that also means he loses more friends than the average Facebook user.
"It's emotional; like losing a brother or a sister," he said. "And I've had times where I'm on the computer and I'll break down and my wife says, 'who now?'
Recent high-profile cancer deaths, like those of Apple's Steve Jobs and the NDP's Jack Layton didn't help.
Mayer says the slow growing cancer inside him is just part of his new reality. But he's not calling it quits.
"Death. It's there. And if you let it get you, it will, if you let it," Mayer said. "But you take your moment think about it and then you move on."