Smiles, Events, and a Big Turn!

Well a bit has happened since my last blog and it is time to update! Since I wrote last time about Dora's Lymphoma Smile Project getting under way in Newport Beach, Ca. She finally made her way into Detroit and to Windsor were she spent 5 days, spreading smiles and awareness to the people or Windsor and Essex County.

Kerry, Me & Peanut Jr, and Dora!

When I arrived at the Amtrak station in Detroit with my brother Jamie and my Son Travis we were met there by fellow Lymphomaniac Kerry Rivard-Allor and her husband Roy! So glad to get a chance to have finally met up, especially when we live not so far apart. After a short chat with Kerry and Roy, Dora's train finally rolled in. She was easy to pick out of the crowd getting off the train with her lime green flowers in her hair and the surgical mask, which protected her from infection on a crowed train. We basically went back to Windsor after talking with Kerry and Roy and getting some photo's with Peanut Jr.. We got her all checked in at the Hilton where she could rest and be ready to go the next day!

RCMP Musical ride about to enter the ring!

Day 2 seen us off to the  (WETRA) Windsor Essex Therapeutic Riding Association's stables out in McGregor On. area. We were there to see the RCMP Musical Ride which just happened to be in the area for a fundraiser for WETRA. Joining us was Brenda and her mom Arnelda. Dora was able to capture many smiles and photos of the event which also included the Canadian Cowgirls show. Unfortunately there was an incident later that evening while uploading the photos from her camera to the computer and ALL photo's taken this day were lost for good! So unfortunate as I had even taken photo's of her with some of the people we knew there as well as photo's with one of the mounties in full dress reds!

Windsor Spitfires vs Plymouth Whalers @ WFCU Centre.

Day 3 in the early afternoon we were able to take in a Windsor Spitfires vs Plymouth (Mi) Whalers exhibition hockey game at the WFCU centre. Joining Dora was myself, Brenda, my Brother Jamie, his stepson Matthias and we met up there with my Uncle Don and his grandson Jim and his friends. So today Dora was able to capture many smiles for her collection and no lost photos this time! A fun time was had by all even though the Spits lost the game.

Day 4 turned out to be a wash with the weather and turned into a rest day.

(Click on this link to see various photo's of Dora's visit with me in Windsor!)

Day 5 and Dora's final day has us picking up Dora at the hotel as she had to check out by 1pm and bring her back to my apartment where we spent the afternoon chatting till Brenda got home, and then we went out to dinner and then off to the train station where we seen her off to continue her journey to Washington D.C. and then home to Catonsville, Md.


Saturday September 15th Brenda her Mother Arnelda her Aunt Louella and myself paid a visit to The Henry Ford museum in Dearborn Michigan to take in a special exhibit that was on there. "Titanic The Artifact Exhibition 100th Anniversary 1912 - 2012."

I have to say it was an amazing experience to be amongst such treasures, yet take in the tragedy of it all as well. An eerie felling indeed. The exhibit itself took about an hour or so to go through, so much too see. After the tour through the exhibit we moved on out to the Henry Ford Museum itself as after all these years living just across the river I'd never been to the museum! I will be going back, again so much to see and such little time. I'm including a link here to see some of the photo's that we took on our visit there to the Titanic exhibit as well as the museum. (Click here for photo's) There are few photos as there was a no camera policy so I was only able to sneak in a few pictures!

Now to back up a bit to the Big Turn! The day after Dora left I had a follow up with my Oncologist to go over the results of my latest C/T scan. The scan itself show growth that was normal and expected as usual so nothing new, however I still felt something was not right. Dr. Kanjeekal asked as I was about to leave when my last blood work was. I told her it had been about a month, so she asked that I stop in at the Lab and have blood work done on my way out. No need to wait around for it, if there were any issues she would call.

Well, the next day her office called! there was indeed something wrong and my blood work was indicating a very low Haemoglobin count and also a very low Platelet count as well. The next day, Friday I felt horrible very light headed, weak, no appetite as usual, just not a good feeling at all, so much so I called my CCAC home nurse to come by. While here we took my blood sugar reading which was 3!! very low! my blood pressure was low too! I went to see my family Dr. and we adjusted some of my medications to try to help with all of this.

In the mean time my Oncologist booked a bone marrow biopsy for me, as well she was doing a referral to see my ENT surgeon Dr. Elbreki in order to do a surgical biopsy of the lymphnode on my left jawline.

Also as Health Canada has now approved Bendamustine for use in Canada an application was made on my behalf under compassionate grounds to have the drug made available to me for treatment once we get the results of all the biopsy's back. I was approved the day after the application was made! Thanks to Debbie Gammon at the Cancer Centre for all the hard work she does to get these kind of approvals for patients here in Windsor and Essex County.

So bottom line is that it is time once again to start Chemotherapy treatments.

Thanks to each and everyone out there who is a part of my team whether it be my Medical Team, Support Team or even my Legal Team for taking the stress of fighting my Employer's harassment (Morrice Transport) and my union (CAW Local 195) for their misrepresentation Hopefully I can get this legal stuff settled and behind me before I get too ill.

Now to focus on fighting this battle with cancer and try to put it behind me for the 5th time in 5 1/2 years!

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.

Add caption

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

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.

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.

"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!

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!

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.