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.

 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

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

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.

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

+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

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!

Day +281

OK, Looooong time no see! Here's the thing – Tony's OK and we do have some small news to impart, but things really are not changing much these days, so we do not feel like we have much to tell you.

News, Tony has been off of prednisone now for about a month. That's good. He is holding steady without that important drug there as a buffer. He is still on many other meds, but not being on Prednisone is GOOD.

Next week, Tony will see the podiatrist (for the 5^th or 6^th time in as many weeks) and the Doc will cut back his ingrown toe nails in an effort to keep them at bay for several months. Its not surgery, but Tony will need to keep his feet above the level of his nose for about 3 days.

Eyes and feet (achy bottoms of feet) are still at the same level of discomfort. As for the feet, Tony really cannot stand without moving for more than a minute or two before they become terribly uncomfortable. Walking is a different story, but because of his toe nails, he is not walking too far right now.

As for the eyes, many of you probably remember that Tony had scarring on his eyelids due to the graft vs host desease. This scarring rubs against his eyeballs and scratches them. Tony has a couple of true discomforts with his eyes that the scarring causes. One is that his eyes are VERY dry and need drops added every 10 – 15 minutes. The wind or any flowing air is a dramatic accelerator of that dryness. So we need to get special gel pouches for the sides of Tony's glasses so his eyes will be shielded from the wind. The second discomfort with his eyes is that bright lights are deeply offensive. So we are working on getting transitions lenses and we spent some time trying to figure out if we needed prescription sunglasses too, or an over the glasses sun glass type thing, or something. We think we have the right plan in place now, we just need to get all the parts. His eyes need a rest.

On the work front, Tony is still working mostly 40 hour weeks. That's good but hard on him. This week, he advanced a little further down “normal” lane and has taken back the responsibility of being on call. That means longer days and the possibility of calls in the night. So, all of this is progress.

As for the medicines Tony is on, its been some time since I updated you guys on this. But he gets 13 oral medicines, sometimes 4 of one kind a day, and he has several different lotion and potion medicines for his eyes. So things are still pretty intricate in that regard. (I feel like I spent the last year earning a pharmaceutical terminology degree!:)

Here's hoping you are all safe, healthy, happy, and thankful for what you have - whether that be 1 small thing or many FANTASTIC things. We love you and feel bad about the silences, but really don't want to blog just for the sake of blogging!

(To toot my own horn, my students and their families raised close to $1400 for the United Food Bank this past week and that equals close to 7000 meals the Food Bank can provide to those in need. When I was little and times were tough in my family, an organization reached out to us and helped us out. I remember that and hope that my students and I can help families the same way. {OK, OK, they gave us split peas---but I don't want to look a gift horse in the mouth!!! })

Peace and love :) Happy Thanksgiving-Karen and Tony