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.

Halls Wrapper ??? (Day + 132)

Well, the pattern continues - the duration between these blog updates continues to get longer. Sorry about that. I do have things I could post, I just have been lazy and do not want to take the time, SORRY. Lets start with a “body” parts update. First up, hands: they are good at about 80% normal, the Neurontin med does make them numb and shaky (more than I would like) so that is why I am only giving them a 80%. Feet: we are in the 50% of normal range. I think the meds are helping but really I have not been testing them much as I have developed a new issue. Currently, I am experiencing spats of excruciating pain in the bones of my legs (mostly my left). The doctor said this is not uncommon as one comes off long-term high-dose steroids. Oh! and this might be a good point to let you all know that I am officially off all steroids (yea!). The over-all pain is not constant but can flare up to an 8 or 9 on the pain scale. It has been going on for about 7 days now and I could expect another 2 weeks before this gets under control. The real bummer is that I had been cleared to drive by Dr. S as long as I was not on any mood-altering medicines. Well...I am back to taking pain pills very 4 hours or so for the bone pain, which as you guess eliminates me from driving AGAIN. Back to body parts- last time I posted, I told you that I felt I caught something as I was having a bad cough and low-grade fevers. Well, it turns out I had (and still have) para influenza 3 (the common cold to a normal person) and it has wiped me out. I can't get my batteries charged to what I had just a few weeks before; everything is a challenge and requires some real thought as to- do I really need to do that or get this? Karen has really had to stepup and do even more as I am using up my energy attempting to go to or “do” office work. I need to keep my job you know and it has been a long time since I have contributed to the team. So I am making a bit of a special effort to get in the office and get things done. You know what, this is getting to be a long blog so let me just end the “body part” update and say that everything else is status quo.

I do have one last item to share with you - a bit of a funny! You see, in dealing with the almost constant coughing, I have been trying everything. We even got a prescription for cough syrup with codeine in it to help the cough. Anyway, as you can imagine, I have been going through my fair share of cough drops and have used several different kinds over the past several weeks. So I was quite stunned the other day when I came upon this foreshadowing cough drop wrapper. Now, I have to put this in some context. At the time I found and read this little message, I had a 100+ fever, a bit of diarrhea and bone aches going on while simultaneously trying to show a good face as we were visiting friends. So you can image my surprise when a wrapper told me “You've Survived Tougher”. I do not know if it is irony or, really, what to call it but right then I did not need or want a cough drop wrapper telling me this was not so bad. I quickly shared the little insight I had just been given from the wrapper to the group around me and we all laughed. Which quickly changed my mood. We ended up reading all the sayings from each wrapper for the remainder of the night. In the end, (with the help of meds) the night turned out great and we continued to read each and every wrapper looking for one better, but none fit like that first one.

Wow – how about you all weigh in – raise your hand if you think I have survived tougher???!!! :)

Cards and Well-Wishers (Day +117)

Over the past few months, we have accumulated a lot of “wishing you well” cards- I mean a lot of cards. We are not sure what the exact count is but it is well over 100. The dilemma has been that from time to time I like to reread the cards and we also wanted to display them somehow to that visitors and friends could see all the cards. So as the picture below shows, we have devised a working solution. Karen strung 10 or so cards on a string with a singe hole punch in the back side of the card allowing people to see the cards and yet we are still able to open and reread them. It has be a work in progress but it seems to be working just fine.

Now as for me... Things are still not progressing as I had hoped. We meet with Doc S. again and she explained that with the GVHD I had it kind of reset the clock and that she would put me at day 60 in the process even though we are now truly at day 117. I am not sure how that makes me feel but it is what it is. The past few weeks I have been feeling somewhat weaker and this week I seem to have caught something - I have a constant cough and low-grade fevers. Neither of which is all that bad but with my energy already depleted; adding in coughing every 2 minutes and the fever, I am wiped out in no time. I have been trying to get back into the office and have been successful a few times but I think my body is not quite ready yet. I still hope to try get in for a few hours this week and see how things go. As for my other issue areas, things are holding steady; hands and feet are manageable but still painful, food is still salty and right now my lungs are a mess. We just need to keep moving on, and see what the next day will bring. We know it will get better, it is just we are getting eager for the better to start.

Issue Updates - Day +108

My sister was in from San Diego for last week's holiday weekend and to help celebrate my 100+ days since transplant. She informed me that I have not been “ending my blogs.” I have been telling you all about my trials and tribulations but have not been following up on the status of some of the issues. I just move on to the next issue. So today I will try to do a bit of back tracking to let you know the status of some of the past issues. There is a lot to add and read so take your time and please let me know if you have questions. I will not cover all the issues, just some of the bigger and on-going issues.

• Hands – These guys have been an on-going issue for some time. They are by far the most annoying issue for me. I have been dealing with the loss of my finger nails and continued nerve ending pain. Most of the pain is in my finger tips which, as you can imagine, makes daily activities difficult. I have started a new medication, Neurontin, that is supposed to help with my nerve endings. This med has some strong side effects and takes about a week at full dosage to even see if it will work. For now, I am slowly building up to the 900mg dosage, it will still be a fun week before I get to that amount and then we can see how much it will help. Anyway, as far as hands go they are still a major issue.
• Feet – This is the next major issue. I have a great deal of continuous pain coming from my feet; especially from my heals. This part of my feet had a particularly bad episode of GVHD awhile back and it has never really come back to even close to normal. I do what I can to make the pain less, keeping my feet elevated helps as part of the issue is increased swelling in my feet and legs. At times, I have to wear special socks to help keep the swelling at bay, I always have shoes (with extra-cushy inserts) or slippers on to try and help . This foot issue creates problems of its own, like walking... which makes any real exercise difficult. The best I have been able to do is a few ½ mile walks and then they require help from additional pain meds. I tend to pay a bit for these walks, but I feel they are necessary. As many of you know, an important part of my life is hiking and I need to know that I can return to this activity ASAP.
• BK Virus (peeing issues) – This one has been under control for a few weeks now, but has just recently come back in the last few days. We are not really sure why (as usual) but things in general have had a turn for the worse in the last 2 weeks or so. Most of the old GVHD locations have been the hardest hit. The doc's are not very concerned at this point, they have seen this in the past with other patients and feel these reoccurring issues can still be affects from the chemo and meds I received in preparation for the transplant. The reason this is now coming about is likely due to the steady but slow reduction in steroid medication. You see, I am in a catch 22 again, the more we reduce my steroids, the more I become susceptible to any virus and germ issues. Yet I need to get off the steroids to enable my new immune system to begin to try and take over. While I am on these steroids, my body (and mind) do not feel they need to create and work on my own immune system. So we are working a strange balancing act to try and get my immune system to starting “working” and keep me from being debilitated from this BK Virus.
• Lungs – I have not talked about this in the past but I have needed to wear a mask any time I stepped outside. This restriction has been lightened in the past few weeks, but I still feel the need to have one on or close by. I am just so susceptible to everything, construction dust with just a bit of mold in it or an unexpected sneeze from someone passing by could pass some simple bacteria that would not effect a normal person but could put me back in the hospital.
• Food (eating restrictions) – This one has been a bit of a success. At this point, I am able to eat just about anything - fruits or vegetables must be cooked but everything else is OK to eat. Not as far as taste; I am still experiencing an extreme saltiness to everything. We do what we can to reduce salt in everything I eat but I just can't get the taste out of foods. The doctors say this to shall pass but they do know when.

Alright that is enough for now. I hope this helps you all understand how things are progressing. I know it all sounds a bit negative but from what I am told this is what we can expect. The doctors have admitted that I did/do have a bit of an extreme case of GVHD and other side effects but not something that we can't work through. So that is what we are doing, “working through” this...

Tony