Well folks, this year’s “Be The Match Walk/Run” is finished and I can say it was a success the total raised for the organization was over $45,000. This was the first year for the Phoenix race but the turnout was good and “Team To Do It” was definitely well represented. I just wanted to take a minute and once again thank each and every one of you. Your contribution is truly appreciated. What can I say? All of you wonderful friends and family have been behind me though this whole journey. There may never be a true end, but I am starting to redefine my understanding of the saying the “Journey is the Adventure”.
So thanks for traveling on this leg of the journey with me and I am sure I can promise more adventures to come.
Tony
Tuesday, October 29, 2013
Monday, August 12, 2013
Be The Match Event Oct. 26th
Hello All,
As usual, it has been a while since my last post and, to be honest, this one is not really about me. You see, the organization that helped out in finding a matched donor for my transplant “Be The Match” is having a local fund raiser. It is not a big event (at least not yet) but it is a great cause. The actual event is a Walk+Run 5K on October 26th. I am currently in the process of putting a team together to participate, but for the out-of-town folks that might be interested in joining and can’t make the trip to AZ, please think about donating in our team's name. To sign up or donate and be a part of our team. just click on this LINK and select either the Join or Donate button. For those of you interested in participating there is an entry fee of $30 but remember it’s going to a great cause. During registration you will also be asked to set a personal fund raising goal. In my opinion, you can skip this part as, firstly, we are working as a team and, secondly, I would just love to have as many team members as I can. I don’t want the $ to scare people away. I understand this is a fundraiser but it is also just a great chance to show your support and hang out with some great friends. Please feel free to contact me with ANY questions and please pass this info on - the more people the merrier.
As usual, it has been a while since my last post and, to be honest, this one is not really about me. You see, the organization that helped out in finding a matched donor for my transplant “Be The Match” is having a local fund raiser. It is not a big event (at least not yet) but it is a great cause. The actual event is a Walk+Run 5K on October 26th. I am currently in the process of putting a team together to participate, but for the out-of-town folks that might be interested in joining and can’t make the trip to AZ, please think about donating in our team's name. To sign up or donate and be a part of our team. just click on this LINK and select either the Join or Donate button. For those of you interested in participating there is an entry fee of $30 but remember it’s going to a great cause. During registration you will also be asked to set a personal fund raising goal. In my opinion, you can skip this part as, firstly, we are working as a team and, secondly, I would just love to have as many team members as I can. I don’t want the $ to scare people away. I understand this is a fundraiser but it is also just a great chance to show your support and hang out with some great friends. Please feel free to contact me with ANY questions and please pass this info on - the more people the merrier.
And finally I just want to say THANKS everyone for all your ongoing support.
For those interested, a true health update will be posted soon.
Tony
Saturday, June 15, 2013
1 Year + 132 days
Hello All! It's once again time of an update. I am not sure
who is still reading this but I still feel the need to post something for
posterity’s sake. Actually, there is some interesting information to report. We
finally got approval by my insurance to get “fitted” for a set of “prosthetic
replacement of the
ocular surface ecosystem” (PROSE) contacts. As you might
expect these are not your typical contacts. The special component is that these
contacts have additional spacing (a bigger cup) to hold liquid. I guess I
should go back for those of you that may not know, one of the side effects from
my transplant is that I no longer produce tears (dry eyes) additionally, as
part of GVHD, I continue to have scarring on the inner lids of my eye
(scratching, like a burlap sack). Anyway, we got the OK form the insurance and
jumped on the opportunity to get fitted. This treatment is very rare and
offered in only a few cities, fortunately one of the locations is the UIC
hospital in Chicago. Being that I have family there I went with that location.
Just to give a point of reference here as I always refer to Chicago as an “old”
city, the true name of the building that I had my treatment at was the UIC Ear
and Eye Infirmary (built in 1819, now that's old).
Now about the contacts, like I said they are special. They hold additional liquid for my eye and
help keep the scratching down. To accomplish this feat the contacts must be a
PERFICT fit, if not, the liquid would just spill out. The fit makes it more
like a suction cup stuck to your eye than a contact, in fact, it takes a
special plunger tool to remove them. That interestingly enough brings me to the
other very “special” part of these contacts; the “insertion” process. Like I said they are a big cup that holds the
liquid for my eye. Well I need to get this cup to my eye without spilling is
contents. Not any easy task, even when you get it on and you don't spill the
liquid out you need to be sure to not get any air bubbles in. Trust me, seeing
through a bubble is an interesting experience, one that you don't what to
experience if you can help it. The other hurdle is the fact that the PROSE are
hard contacts and 3x times as big as regular ones. That's right 3x times
bigger, this all may not seem like much for you non-contact wearers out maybe
you can relate. So needless to say it has been a challenge but I am getting
better at the whole process every day. At this time, I can only wear them for
about 6 hours at a time, and need to build up a tolerance of them, but from
what I can tell, this is going to be worth it. I should note that I will still
need to put drops in my eyes every now and then. It will depend on the environment as the
PROSE only keep the inside of the eye wet, the outer layer is still going to
get dry. One last thing, I want to say THANK YOU to Tracy F. for doing the
research and finding this treatment for me, I am not sure I would have gotten
this far without her. OK enough about the eye for now; I will keep you posted
on any progress.
This photo shows the PROSE contact and a comparison of its case and that of a regular hard contact case.
There is one other topic that I should touch on. I will not
go into details here and now but it looks like I have another post-transplant
issue to deal with. It looks like I will be needing hip replacement in the not
so distant future. For now, I will just say that I have Avascular Necrosis or Isteonecrosis
(click to see Mayo's definition) I will
talk/write more about it when treatment gets closer.
Truthfully, things are going OK over all, my body and mind
are still working things out but I am feeling better and at least trying to do
more every day.
As usual, thanks everyone for your thoughts and well wishes.
Tony
Wednesday, May 29, 2013
Day +104 and 1 year (from karen)
Got an update for one and all.
Everyone can remember the many sagas of Tony's eyes. We have been
working since December to get a special therapy for him called Prose.
Prose are prosthetic contact lenses that have a reservoir for saline
solution built in so that Tony's eyes are both shielded and
lubricated all day long. We finally got the insurance company to
approve the Prosthetics. Tony is going to Chicago tomorrow and
having his first appointment on Friday. YEAH! We are so hopeful
that these lenses will be a quality of life changer for Tony! A lot
of people have trouble with them but not many people have the
incentive Tony has to make it work out. Keep fingers crossed
everyone!
Beyond that, we haven't much else to
report. We are just working to keep moving forward. It often feels
like there is always something else wrong. On the bright side, Tony
has begun riding his bike regularly. He started with “Ride to Work
Day” in late April and has spent the last few Sunday's on short
rides with our friend Colin and his fantastic and adventurous 9 year
old daughter! What a chance for Tony, to watch and ride with a new
Mountain Biker developing her skills!
Its great to finally be at
this point! Peace out all.
Tuesday, March 26, 2013
1 Year + 40
OK,
I have been pushing a fellow cancer survivor to get back to writing
in their blog, and the hypocrisy is getting the best of me. So here
we go. I have to admit I have held off on this update. Karen and I
intended to send out a big post on the one year celebration date but
I just didn't want to. I know how big a deal this one year
anniversary was, but this one year marker also brings the
acknowledgment that I am just about at the end of my recovery. Things
may still improve a bit over time, but it is very likely that this is
it. The way things are today is most likely the way they will be for
the rest of my life. Now I am ever so grateful that I have a life to
live and I understand how truly lucky I am. I just had always hoped
to return to my old self and it looks like things will be a bit more
different than I had expected. For that reason I have been reluctant
to stand up and cheer over this mile-stone for what it really is. It
has already been a few weeks, and I am feeling better about my new
status, but I have always been able to push my body and although it
might hurt a bit afterwords it would respond as needed. I took great
pride in that status and my abilities. It was a “mind over matter”
issue for me 26.2 mile run, rim to rim Grand Canyon trek, 24 hour
mountain bike race, bring it on. Now I can push but it’s my body,
not my mind, that controls things. So I am grateful for all that I am
capable of and the fact that I am simply alive and here today, I just
wanted things to be a bit different- maybe better? Now I am not
asking for any pity here, I am just explaining my feelings. I am
still going out and trying, in fact I just did a tandem sky dive jump
with my niece last weekend. I am no longer able to jump solo, but
still able to “do it”. We will just have to see what the future
holds, there are always new meds and procedures that come about
everyday. Maybe my million dollar man remake is not over yet. This all
fits a motto that I adopted a few years ago from a move. The saying
is “ I'm going to give up this body someday to someone but they'll get it used” and I still intend to follow that motto to the
fullest.
Tony
Thursday, February 14, 2013
+1 Year // Day + 367
Hey all -
Not a big one, just an acknowledgment. A year. A leap year. What a year.
Going this weekend to an annual 24 hour bike race. NO I AM NOT RACING! Just able to go... That's a start.
Will post more sometime this weekend.
THANKS to all for a lifetime of support and love smashed into 1 LONG year! :)
Tony & Karen
Not a big one, just an acknowledgment. A year. A leap year. What a year.
Going this weekend to an annual 24 hour bike race. NO I AM NOT RACING! Just able to go... That's a start.
Will post more sometime this weekend.
THANKS to all for a lifetime of support and love smashed into 1 LONG year! :)
Tony & Karen
Sunday, January 6, 2013
Day 320+ 1st hike in a year
Hello All, it has been awhile so Karen
and I thought it was time for a bit of an update. I can simply say
there has been some steady progress. Most everything has improved to
some extent with the biggest issues having to do with my eyes and
energy. I still need to be very careful in what I do and where I go
as catching a cold or something is a very likely possibility for me.
However having said that I am finally getting out just this weekend-
a few friends helped push me along on my first hike in over a year.
We didn’t do much; just a 4+ mile trip, but it felt great to get
out. With the help of some special motorcycle glasses I was able to
keep my eyes in check and we moved along at a slow, steady pace. I
want to send a special thanks to Tanya and Scott for initiating this
trip, I am sure I would still be waiting for my first trek back if
they had not got things going. Really things are going good; some
days are still better than others, but I am back to work full time
and able to do more and more around the house (e.g. cooking dinner
and doing dishes). Things have been so good that Karen and I were
able to go to Chicago for X-Mass for the first time in 2 years, again
we didn't do much but it was GREAT to see family for the holidays.
As always I truly appreciate everyone’s
well wishes, they have been very inspirational and do help keep me
going. THNAKS EVERYONE!
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