Day 1105 RSV Hospital Visit

Well its been awhile but it appears it was time for another hospital visit. Once again, i was able to contract an unusual virus RSV (Respiratory syncytial virus). Some of you with kids might know about this virus as it is common among children under the age of 2. So once again, I went out and found something unusual to deal with. The doc’s have two main treatments that they are going to work with: first is called Intravenous immunoglobulin (IVIG)- a blood product administered intravenously. It contains the pooled, polyvalent, IgG antibodies extracted from the plasma of over one thousand blood donors.The goal with this one is to super boost my immune system and help my body be in the best shape to take on the second treatment. This IVIG treatment requires 5 sessions each 48 hours apart. The other treatment is an inhalant called Ribavirin.This one has some potent stuff in it. To the point that my hospital bed (with me in it) is shrouded with a plastic tent and a “demistifier” is attached to catch and filter all the excess medication floating around. It really is quite the show to see the nurses setting up everything in full hazmat suits. They don’t want to be exposed to the med or me at this point so there has been a lot of dressing and undressing gowns just outside my door. I feel bad for them to have to go through all that work just to do something as simple as checking my vitals. Basically, I just need to sit in my tent with a nebulizer device for 2 straight hours, not too bad. What makes it challenging is that I have to have 15 treatments and they are every 6 hours. So with these treatments and other nurse duties I can can expect to get no more than 2 hours of sleep at any one time, and if you’ve done the math I should be in the hospital until next week Monday (Mar 2nd). Oh well that’s the way the new me goes sometimes, it’s a bit like a car- I need to come and get maintenanced every now and then.

Hip #2 Done, What's next?

Hello all, sorry for the delay on this update but I have some good news. Hip number 2 has been replaced. Last week, Friday Sept 12th, we were finally able to get the surgery scheduled and completed. Once again, the actual event went smoothly.   I was able to be in and out of the hospital in just over 48 hours. Once I was released and home we had some great help with my parents visiting from Chicago.  They were able to help me with my day to day activities, as well as be my personal limo service getting me to doctor appointments and blood labs. Unfortunately, they had to return home Saturday, so today (Monday Sept 22nd) is my first day limping alone at home. Overall I am doing OK not much different than last time.   More bone ache and more pain pills but things are moving in the right direction. With this being the second hip,I do feel more unstable and will need some physical therapy to help me move around better. I don't know when that will start but I am looking forward to it. It is finally time to take some big steps forward with the new me. For now, I will need to stay patient and wait for the PT to take effect as I continue to reset my childhood immunisations and balance my chronic mouth and gut GVHD. It might not look like it but I think we are turning a corner and more good things are to come.

Just and update.

Hello all, just trying to keep up a bit lately with my medical status and changes. To be honest it has been a bit of a downer the past few weeks. After the unexpected hospital stay in mid-June things have domino-ed. With the postponement of my hip replacement, the blood clot in my right forearm and now high liver enzyme levels. The liver thing is an ongoing issue but has gotten to a level where we need to try and “fix” things. There has also been an increase in issues with my mouth, gut, and over all fatigue.  So for now Dr. S. has brought back the steroids to try and help zap things back in line, we will see what a high dose 2 week regiment can do. If this zapping works we will see how fast (or if) things go south again. We may still be dealing with the effects of the hospital stay, or this could be another flare-up of graft verses host disease. Either way this is going to postpone both the cataract and hip surgery’s and delay my personal goal of getting to the new me.

Sorry this is not much of a positive update, but I wanted to let people know how things are going and help me keep track of my status when I look back on these posts later.

Take Care All,
Tony

Short Update

Short update today, I had the chest CT scan last week and the phenomena and infection are depleting as expected.  However it just wouldn’t be me without something new. I ended up getting a blood clot as a result of the IV’s from 2 weeks ago. The main area for the clot is in my right forearm/wrist, which ends up being one of the more annoying places for a clot. No real concern for this turning into anything bigger than a very painful experience, the clot with dissolve harmlessly over the next week or two. It is just another gotcha kind of thing, as pain meds don’t help and a need to use my arm/wrist for work and dally life stuff. Anyway we are still on track for cataract surgery July 22^nd but no new date for the 2^nd hip replacement. So expect more updates as things progress.

Tony

2nd Discharge (home again)

Well I don’t know what to say but I am once again back home. This second hospital stay ended up being just about as short as the first. After another close call,  we were able to turn things around quickly - just 3 days and 2 nights, and some very heavy antibiotics and medication to get me discharged. From what we can gather I have haemophilus influenza and a bit of a bug in my spinal fluid. The good news is that these things can and have been reacting very positively to the drugs. As Karen stated all this is not a big issue for a “normal person” but without a spleen and no vaccinations these bugs were able to get a good hold on me.  So what’s next? Not much. We have been sent home and given a new antibiotic with orders to rest and recover. With a few follow up appointments and a final review with Dr. S a week from Friday. Personally I am feeling alot better and things should improve over the next few days, in fact I hope to return to work Monday. It looks like we finally have a good handle on things and that’s where we stand. I will give an update next week as we get results from the follow up tests and appointments.

Finally I want to say THANK YOU all for your support. As I have said before it really does help to know that you have people rooting for you.

Tony

2nd stay, day 2 - "Unknown"

Hello everybody - This is Karen - Tony's fine, I'm just taking a turn. :)

Ok, so quick review of why the 2nd stay.  Got released Friday evening.  Felt fine.  Woke up Saturday AM with a neck ache.  We figured - Slept funny, got a sore neck.  Took Tylenol and put on some muscle cream through out the day.  Sunday AM - same neck ache, head hurts, had to get up to pee every hour.
Somethings not right here.
We called the Doctor - reviewed with him and he said, let's get you back into the hospital, somethings going on.
So yesterday around 10 AM we were readmitted.  General feeling is oral antibiotics were not strong enough to fight this infection.  BTW - Tony has Haemophilus Influenza.  For those of you that do not know, most of the time when we think we have the "flu" we actually have some other "bug" we do not have the flu. The actual FLU is deadly and that is why there is so much worry over H1N1 and other influenza.  The Spanish Influenza in 1918 killed 50 million worldwide.  (sorry, History teacher sidebar!)
As things stand now, Monday 3:00 PM - Tony has a small amount of "cells" in this spinal fluid (they did a lumbar puncture {spinal tap} yesterday evening)- not really enough to worry over at this point.  They are culturing that and running cultures on his blood work too.  Did an EKG and took him off of 2 of the 3 antibiotics he was on yesterday.  He is still on an antivirul medicine.
Honestly, he is doing well over all.  Not a lot of pain or discomfort, in good spirits with good energy levels, so don;t worry.  We just need to understand what is going on inside of him.
Again, from last week's stay, he has no spleen and has had no immunizations, so he is in a vulnerable place when it comes to infections and disease.  That's how the Haemophilus Influenza snuck in.  
Now,on a strange note, the docs are talking about stopping his meds and letting him go tomorrow AM.  We are a little thrown by that, but this is all just so weird for us.  Tony has an appointment to see his regular transplant doc tomorrow at 9:30, and we will see if that is where they direct us.
So, that's the info we have for now.

Short stay (THANKFULLY)

Well folks this may not come as a surprise to many of you but I am back home. Yes that’s right - home in Mesa, AZ with my own bed and bogs to pet. It was a whirlwind as you might expect, but it appears to be a short wind storm. After having a 104.1 degree fever on Tuesday night and then a blood pressure of just 68 of 44 Wednesday, Karen and I were shocked to hear that I would be going home. I don’t have my energy back and with be on HIGH levels of antibiotics for some time but I am home. Officially Karen got me back home around 6PM last night so I only had a 2 and a half day long stay. The doctors didn't say this was an indication for a fast recovery just a fast (and I am hoping successful) diagnosis and treatment.

From what we can gather up I have had a bit of pneumonia/valley fever for some time maybe 2 weeks or so, but after a busy day Sunday and working a good part of Sunday night I moved things to a more infectious stage. The doctor used the term hardshelled bug - a sepsis blood infection, and for most this wouldn't be that big a deal- apparently your spleen is capable of cleaning some of these guys out and if not, your normal childhood vaccinations should be able to finish things off. Well unfortunately for me I no longer have a spleen, that went on round two of my cancer treatments back in 2002 and as for vaccinations / immunizations they were are wiped out as part of the Stem Cell transplant. So I had no defense for this one and it was able to do its work hard and fast.

Once the doctors were able to get a handle on things and knew what we were fighting and how best to treat it, my health improved rapidly and I was moved out of ICU very early Friday morning. From there I was monitored for the day and released. Thankfully the antibiotics that I am on are not an IV infusion, just oral pills so they let me go. A simple case of “no more we can do here” you can recover better at home. So here we are at home. I cant say that I feel great but I would put things in the 60% range. This does officially postpone my 2nd hip surgery but I couldn’t say to when - maybe early August. All in all this was a bit of a scare but as usual we were able to push through it, we will just have to take it easy for a few weeks and see what is next.

As always thanks everyone for you support.

Tony & Karen

Unexpected Hospital Visit

Hello all- I just wanted to send out a blurb that I am back in the hospital. Not sure how or why but I have aquired a pretty good case of pneumonia. Things have stabilized but I am still in the ICU and hoping to get to a normal floor tomorrow and out of here just a few days after that. As I have said before, these things will happen from time to time- my immune system will always be a bit out of whack and it just must have been my time. Anyway the real set back in my eye’s is that I am only 6 days away from my scheduled 2nd hip replacement and will now need to postpone it for an unknown length of time. This getting the new me is talking a lot longer than I had expected, but I will keep trying and looking forward, you never know what is next with we.

+ 2 years 38 days (hip #1)

Not sure if I should still be titling these blogs with a post transplant date but they do all count. I have passed most of the hurdles but it can truly take 10 years for my body to be fully and completely settled with the new me. I think I will keep it for now as I don't have any other interesting blog titles. 

So things are going good. We just had the first hip replacement Friday and I was home from it Sunday. Yes- 48 hours is all it took. That’s OK with me.  I have spent more time in a hospital than I would have liked over the past 2+ years. I still go to the Mayo Hospital for appointments just about every week but its a whole different story when you spend the night.  

As for hip recovery process, we are still working out the finer details. As it stands right now, I will be home for about 2 weeks dealing with pain meds and mobility issues. Then as I move to using a cane and have better mobility, I will work from home and ease back into the office routine. If all goes as expected, this hip will be better than before and we can move on to the right hip and take another step to the newest version of me. 

As always thanks everyone for the continued well wishes.

Take Care All. 

Just thought I would throw a recent photo in with this post, it was taken 6 days per-surgery.

Day + 730 (2 years post transplant)

Well it has been two years… and what a two years it has been. So many things have changed and so much has happened - it has been a real interesting journey. I am well on the way to completing my secret plan of being the first fully rebuilt human.  With new or improved blood, skin, eyes, intestines, feet, hands, toenails and soon hips. All and all, things are going OK and I am trying to learn to live and work with the new me. My days of playing hard might be behind me but a part of me is just not able to let that go. I will be attending this year’s 24 hours in Old Pueblo mountain bike race as a spectator for the first time this weekend and it going to be hard. I so badly what to be the old me and to be excited and anxious for the adrenalin filled ride. There are few things like riding a bike at 18+ miles an hour through the dessert in the black dark of night  - it’s a whole different perspective. My condition still can improve as the doctors and I now work with the new me. As I mentioned, I will have my hips replaced soon (left one in March, and right sometime in June) we are looking to have plastic surgery on my left eye to help allow me to fully close it and I am going to try to start some physical therapy or strength training soon. So the final verdict is not in yet, I am definitely not where I want to be as far my abilities but, all and all, things are OK. Let’s hope next year I will be able to ride the bike course if not race and maybe build back to some greater resemblance for my old self. For now, I have to remember to try and be patient and maybe not so hopeful, as a fellow transplant patient put it I need to be looking “forward together forward”.

That's it, that’s my two year update. THANK you all for being there for me and Karen over the past 2 years. We really do appreciate everything everyone has done for us. As things happen from time to time, I will try to update this blog as a record for me and you all as well  - just to let you know how life is going.

Take care everyone!
Tony

“Be The Match Walk/Run” is finished and I can say it was a success

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

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

Both Sides of Cancer - Day 245 -

Yes, we ARE still here. Unfortunately, there is little news to report. Tony has had very little change over the past few weeks. All of the issues he has had for a while are still lingering. A new issue, (yeah, something to report) (Yuck, more problems) is ingrown toe nails. As some of you may know, every year, right about now, Tony would hike in and out of the Grand Canyon, wait a day and then do it again in the opposite direction. 48 miles in 3 days- South rim to North, North Rim to South. So, when you hike that many miles, downhill and then wait a day and hike that many miles, again, downhill – you lose your toe nails. Every year- you lose your toe nails. Sooooo, with that kind of history and all the Chemo-therapies and the transplant, Tony lost his nails again back in April. Now, he has started to experience pretty bad pain with in-grown toe nails. He has seen the doc twice in a week. We will see where this leads.

OK, now over the past week, Tony and I have been presented with two views on cancer. The first was a chance to attend Mayo Clinic's (and Phoenix Childrens' Hospital's) 6^th Annual Bone Marrow Celebration last Saturday. It was a Celebration of Life. Over 800 people were there. The place was filled with transplant survivors and their families. Kids were everywhere. There was a slide show from last year's celebration and from the hospitals. It wasn't just for patients but the staff from both Hospitals along with their families were there too. Tony and I felt really lucky to go and see all the caring nurses and Doctors who have helped him over these past 10 months. We met Dr. S's kids – which was great.

I know the general theme of the past (few and far between) posts has been how hard all of this has been and, often, how little progress we are seeing. {Ok, Ok since July there has been progress but it feels miniscule!!} The intent of Saturday's celebration was to recognize where we are and how far we have come in this long marathon-like process. Whether we are happy about WHERE we are right now, we are SOMEWHERE and that night is designed to force us to see that.

Now, on the flip side of that, one of Tony's co-workers has had a year much like ours. Late last summer, her husband was diagnosed with a tumor in his brain. He had success in the first few months of treatment. However, things took a turn for the worse and, last Tuesday, he lost his fight with cancer. Services were held Saturday evening. We were not able to attend both in full. So, we did what we could to include both events. It was a bittersweet night for us.

For me, it was... Tony's coworker and I have been walking the same road, fighting the same fight and enduring the same difficulties over the past year. It hasn't actually been OUR road, or OUR fight though. It has been our husbands' and we stand by; watching, waiting, helping as we can, but so often, just watching this difficult, awful fight. And now, her husband is gone. His fight is over. And it feels wrong and scary and... wrong.

Anyways, we wish there were rainbows and moonbeams shooting out of this post. But, honestly, there aren't any this time. There just aren't.

Take care all – we love you and miss those of you so far away.   

Day +199

Well Hello Everyone! (Karen here)

Just a quick catch-you-all-up blog. We realize it has been a while since our last post... (yes, we know this is a familiar refrain!) Maybe the first thing we should do is take you all back to a time, back in March, when Dr. S. said “we measure progress in weeks.” That was such a true statement... 6 months ago. But more and more, we realize we are in a place that measures progress by month. :( Not great, but, continuing in our enduring efforts towards positivity, progress should be acknowledged as Progress. Forward motion is forward motion. Yadda Yadda.

Basically, Tony is SLLOOOWWWWLLLLYYYYYY feeling better in most ways. Eyes are improving, incrementally. His pooper is inching towards some little bit of better (not much! But still a little.) We are on a steroid regimen of 5mg every other day now, that's down from 60mg a day back about a month ago.

Back at the beginning of the August, Tony began working full time. That is still happening – YEAH! However, he is SOOOO tired each day after work. Tony is ridiculously tired – like not even enough energy to get his own water or load his cup in the dishwasher. What's really funny – only if you are not me – is when he looks over at me on a weeknight and says “We should paint the bathroom this weekend.” Totally serious and believing that a job like that is completely feasible. Hello – are you kidding me??? I tell myself to remain calm, take it one step at a time, just go with the flow. The next day, he is over that plan. For now! Whew!

Also, in the interest of progress and news for you eager beavers. Tomorrow is Tony's +200^th day. Back in February, we had these GRAND plans that Tony might be ready to do a little hike in the Grand Canyon by October. Whoa, what a couple of dreamers we were. But, still. Maybe later for the Grand Canyon, huh? At least we can say, “maybe later.” Right?

One last note, today we received a FABULOUS bunch of flowers from a great couple of friends, telling us to keep going forward and to look ahead to fall. We will. THANK YOU Ambika and Guru! Thank you everyone. Here we are, looking forward to the Fall.

Love you all – Take Care – Karen and Tony