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

day +187

 Apparently, people are still checking into my Blog (thanks), unfortunately, it seems that I have been neglecting my duties to update it. If I had to give an excuse, it would simply be that things have just been moving along so slowly lately that I don’t see (or feel) there is anything to report. Nothing has really gotten all that worse, I just don’t see any leaps forward and I guess I am looking for a leap. So the status…

·         “Graft versus host disease” (GVHD) of my gut (diarrhea)– this seems to be back under control. GVHD is my biggest issue as it typically starts the treatment/medication loop. The doc’s need to give me meds to help my body from rejecting my very own organs, but the meds have some big side effects so I then need to take meds to help control the other meds. You can see the loop starting for form…

·         Eyes – It turns out that these guys have been an issue ever since my first GVHD encounter back in the hospital (about day 25). The GVHD back then was more severe than we had thought and had in fact created scar tissue on my eye lids but the pain and steroid meds had been keeping things at bay and I didn’t feel any issues. As we start to lower levels of what I will call “maintenance meds,” we learn more about how my body has (or is) reacting to the transplant. We are sure there are more discoveries to come as we work towards removing as many medications as possible. As of now, my eye had felt like someone had placed a burlap sack in it, now it’s more like a piece of tissue paper - still annoying and a bit irritating but much more tolerable. It is about 50% better and I am applying different medicated drops 4 times a day to try and remove/improve the scar tissues. I have to tell you this eye issue made for an interesting 2 weeks of listening to the Olympics- it was challenging. There is a lot of “did you see that!”, “let’s see the replay…”, I am just saying it loses its effect when you just listen to TV especially the Olympics.

·         Joint pain - we have had great improvements with this issue however the fear is that this relief may be due to the increase of steroids and not true progress.  As we decrease the steroids again, we’ll see.

·         Energy levels / Working – This one is hard to describe, there has been some increase in energy however I am “using it up” at work. This might seem a little crazy, but I need to go to work again. I need to think of and deal with “other things”, let alone I am running out sick and vacation time. After work, I am wiped out, but it does feel good to feel the accomplishments of the day. Simple stuff, I know but it’s helping me in the “mental” process of this transplant. I need to know that I can still do the work and that I can be at work. As far as overall energy level is concerned, I hope to get things up a few more levels soon and start back at some daily walks and build up some body strength.

·         Driving – I left this one for last as this has been my greatest joy, I have been driving myself to work and to some doctor visits as of late. I did not realize (or remember) the independence driving can offer. Just the ability to listen to the music of YOUR choice, or stopping for a “big gulp” along the way just because you “want one” has been liberating.

·         Karen back to work – Karen went back to work 2 weeks ago.  That is going well.  The kids from last year keep stopping in to ask how I am and so are Karen’s co-workers.  There is a lot of support there for us and that is so great.  Karen is pretty pooped each day, but still taking care of the home front as I am so tired each day.  It’s working out though!

OK is it about time to end this turns out I have a lot more to say then I expected. Just to end things, I am doing well, but I am still waiting/hoping for that jump to being Tony again. These slow changes are getting tuff.

Thanks everyone for reading this and for your always-encouraging notes and thoughts, we ALWAYS appreciate it. 

Day +160

Day +160

Hey all – Karen here. (Don't worry, Tony is just taking a nap and me typing this up is one less thing for him to do.) Tony's doctor was at a conference and on vacation the past 2 weeks, and we are glad we got to see her today. Over the past week, we have had a lot going on. On Tuesday, Tony had a test to measure the capability of his adrenal glands (long-term steroid use can impede their production), we saw a replacement doc for Doc. S. and we saw an ENT. On Thursday, Tony had a gastrointestinal scope – upper and lower. In the past 2 weeks we have seen 3 docs for his eye.

And today, we were anxious to see Doc. S. to get some answers. A short recap of troubles this past 5 weeks – severe lack of energy, persistent and constant diarrhea, cold-like problems that lesson and strengthen each week, and in the past 2 weeks, the sensation that there is something unwanted in his left eye. I know Tony gave you guys a detailed list last time, but I just wanted to refresh ya'.

Ok, some detailed info on each complaint. Severe lack of energy – back near Memorial Day, Tony was put on a nerve dulling medicine because of the pain and tingling in his hands and feet. We started slow and increased to 3 pills a day around Father's Day. Since then, he has been close to a zombie for energy output. At the same time, he came off of steroids (been on them in some form since September) and Doc. S. made a few other changes in meds. The Diarrhea developed the week of Father's Day. Again, not too much info, but ongoing problem. So, while Doc. S. was on vacation/conference, she ordered the scopes. The concern has been, is this the Graft vs Host rearing its head now that we have backed off on the medicines that control it? The hope has been that the GVHD was under control and the diarrhea was caused by something else. Well, today, Doc. S. had the results of the scopes and it looks like a fair amount of this summer's troubles have their root in Graft vs. Host Disease. :( Even his eye troubles might be laid at the feet of GVHD! As for the Eye, as I said, we've had 3 visits in the last 2 weeks about it and have a follow up again tomorrow. We opted to see a non-Mayo doc for a quicker appointment, and Doc. S. says keep doing that for now, but she really wants us to see a Mayo doctor too.

Now, the plan to deal with this... – you guessed it – steroids. Doc. S. wants to do a burst of steroids over the next 2 weeks. Large doses, reduce every 2 days, until we see her again Mon Aug 6^th. Also, we are putting back 2 of the digestion GVHD drugs. Doc. S. is also hopeful that the steroids might aid the eye irritation. But she wants the eye doc tomorrow to do a culture on the mucus in his eye. Maybe it is an antibiotic-resistant type of infection.

Time will tell.

BTW – The deep pain in Tony's legs has faded and is mostly gone. Now the joints in his legs are vaguely uncomfortable – heat helps some. But progress should be recognized, right? :) Right!

Tony is still working 3 – 4 days a week. He drove himself to work 2 weeks ago, then the eye problem kicked in – yippee. We are really trying to get the driving back on track as I return to work next Friday and so the following Monday, Tony will need to get himself to work. If that does not work out, we'll get creative, but we are hoping we won't need to.

Since I have not posted in quite a while- a little general info on how we are holding up. We've been at this a decent amount of time now. Closing in on a year since re-diagnosis. We know we are lucky, we do. Things could be so much worse. A lady who had her transplant a week after Tony, died. She had trouble breathing, was put into an induced coma and a week later, she passed away. Gone. She was not that much older than Tony. So, we recognize that there is cause for positivity and most of the time we aim at that goal. But this summer has been hard. Each time a problem fades, another arises. We feel inundated. So, we really want the changes we start today to be effective. Fingers crossed!

Much Thanks and Love!!

Karen and Tony

day +148 an update

Hello all, it looks to be about time for an update. Lets see, the check list is... Feet: they are good, the BK virus: is steadily getting better, hands: are great. So one would think all is well, actually if you have been reading this blog for any time now then you would know that is never the case. The new issues? One newer issue is a long lasting case of diarrhea (sorry guys, not sure I can leave this out). For the last 3 weeks now I wake and have 4 of 5 bathroom trips then things settle down for the afternoon (maybe 2 or 3 stops) followed by an evening of 4 to 5 more visits. All in all, I can have 10 trips or more in a day. We are scheduling a ??? test sometime next week to see if this is a GVHD issue. Next on the list is energy, I have very, very little of it. I have been doing my best to get into the office every day and get some work done. It has not been going that bad but it is really draining me. I basically get home and CRASH. That is I sleep for 2 hours, eat dinner and then go back to sleep again. It feels great to be able to go to work, but I wish I could still have a bit of an evening to just “hang out”. I then use the weekends to “recharge,” rest as much as possible, I would love to “do stuff” around the house but the energy just is not there. Finally the newest issue has to do with my left eye. For the past 2 days now, I have had the feeling that something is in my eye, but I can't find it or flush it out.

We were able to get in and see a Mayo doc today (not Dr. S), and he didn’t have any great input. In the end, he would like to see the results of the ??? test before making any medication changes for the diarrhea or energy issues. In fact, all he did was recommend that I see an ophthalmologist to take a look at my eye. We couldn't get something scheduled with a Mayo ophthalmologist, so Karen scheduled an appointment with a local doc for tomorrow.