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.

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

Day +100 !!!

We made it to Day 100! This is a huge milestone - it shows that my body is going to be OK with this transplant. We still don’t have everything in me working right yet and I may still have hospital stays ahead, but we can now believe the transplant is working. Did it cure me of the T-Cell Limhoma is still a question, but one we hope to learn more about that very soon. I will be on meds for the a very long time to come to try and keep things at bay as my body continues to adjust to my new immune system. It is truly remarkable to have finally reached this milestone. We have been looking at this goal for so long now. I can remember the count down ring my niece and nephew made and seeing that shrink down day by day has been a great inspiration and at times showed the magnitude of this process. We are so happy to have made it this far, there have been some trying times and I am sure there will be a few more but with the love and support you all have been shining our way I am sure we can make it through the next phase.

So what is the next phase? Well we do a bunch of test, which I have already started this week (CAT, PET, Pluminary...) to do some before and after comparisons. Looking to see that my cancer is gone and what steps can we take to better my quality of life after transplant. As I said above, I am going to be on meds for a long time (some maybe forever), we need to find the right combination and/or routine to “make things work” for me. I still am dealing with nerve ending issues and other things so we really are still trying to make things work. We hope to make some real progress in the coming weeks as I continue to lower my steroids and let my own immune system take the reigns.

Let the celebration begin, fire off the canon and fire works. 

We Made it to DAY 100! Now on to day 365 and beyond.

I will keep posting so if you want an update this will still be the place. This adventure is long from being over so at this point I should still have something interesting to say every now and then, stay tuned. 

THANK YOU ALL!  

Day +94 Time for an update.

Time for an update. First things first, I want to report that we had another changing of the guard as far as caregiver services. Its been a week now but last Saturday, Tracey headed back to Chicago and Sunday my dad flew in. It was a long stint for Tracey and I will never be able to express my graditute for all she did over the last 8 weeks. With Dad in town things have shifted quite a bit to projects, projects, projects. There have been so many little tasks that we have not been able to get to or are skilled to do and dad it has been able to “get things done”. I will not go into the list but wow has it been helpful to have him around. I feel bad that he has not been out to AZ in over 8 years and here he is working on my home and driving me around to clinical visits. I know he does not mind but I feel bad.

Now as for me. Things are not changing much, we are still lowering meds and I am still dealing with the BK virus and possible re-visit of GVHD. This has been disappointing, but as you have all been hearing, it is to be expected. We can expect sideffects to be an on-going issue for some time. We are getting more and more into the personal side of this transplant process. No one's body deals with the transplant the same and it is turning out to look like my body is looking to make things a bit more of an issue. As we get closer to the 100 day mile stone, it looks like this is going to be more of a process for me. I am still working through issues that we would have hoped would have passed by know. My personal expextations have been high all along and it has been difficult to meet many of my personal goals. Personally, I had expected to return to work “full time” by day 100, yet I am still taking pain pills and unable to drive a car. So my goals are still out there, they are just further out than I had been expecting. I don't want this to turn into a negative post, just trying to keep people informed as we come close to the big mile stone of 100 days from transplant. Don't get me wrong, this is a HUGE mile stone- it just is not an end and I am not where I wanted to be at this point; when I planned this all out in my head, so many months ago.

Alright enough for now. Take care all - I will post again soon,

Tony

Day + 87

Once again, it has been awhile since I blogged anything and am sorry about that. Things are just moving very slowly right now.  I cant tell if I am getting better or worse. It just seems to depend on when you ask me. The current issue at hand is extreme swelling in my feet and lower legs- the swelling is causing so much pressure and pain that I need to take meds now and then. The doc's think this is a side effect and may not be a recurring GVHD issue, but they can't determine from what. So we stay status-quo and make another minor change to my steroids. Our goal is to get off all the steroids and let my body fight the ailments that come about. For now, the steroids are hindering my own immune system from getting in the fight. It's really a catch 22, I need the steroids to keep the GVHD in check yet I need them gone so that my body can take over. We will see what the next few days show, I am scheduled to go into the clinic next Tuesday (I know 3 whole days at home). Hopefully the doc will have a bit more info about the swelling and we can take the next step. As for the BK virus- it is getting better: I can go (sometimes) for over 30 minutes with out peeing (yeh!). Baby steps, but they are steps. Just wish at day 87 from transplant I would be in better shape. Oh well, I will sit back and see what tomorrow will bring.

Thanks Everyone  

Tony

Day +80

Well I managed to get discharged from the hospital late yesterday, so I am once again home and on my terms. There has been no great revelations or treatment options for the BK virus, in fact there is so little that can be done that the doc’s feel we can maintain things at home just as good (or better) than as an inpatient. So here I am at home peeing every 15 to 20 minutes.  You would be surprised how inconvenient these interruptions can be, even trying to read a book is tough as you end up rereading the same segment every time. We have been able to control the pain with the help of dilautin (some good stuff if you can get your hands on it), so that has made things a bit easier (and harder). Now that I am back on somewhat high doses of pain pills it is hard to stay focused and awake so I feel we are still stepping backwards. Ok I am not going to rant here, this is just an update.  We just have another hurdle to face as we get through all this.

Thanks Everyone.

FYI, Karen has closed the “care calendar” as we have kind stopped using it. With that said and people asking -  we are ready to take on any meals that people have been holding out with.

Sorry, it looks like I am not going to get the “peach fuzz” post out, but I thought I would throw-out the photo anyways.

One step back

Hello All,

Once again, sorry for the delay in updating the Blog, I had been waiting for the 75 day mile stone. I had even put together a nifty title and photo (“peach fuze and progress”) as I am beginning to grow back hair on my head. Well unfortunately, my body had other plans and as of Friday we have been dealing with the “BK” urinary virus, that's right- a virus not an infection. I am making the distinction here because just taking a few antibiotics for a few days is not the treatment. Not to get too graphic, the BK virus is a very painful urination process as you pass blood clots. Additionally, in my case, I have the need or sensation to release my bladder every 15 to 20 minutes. So I have been re-admited to the hospital to help control the pain and watch for other issues. There is no real treatment for the BK virus, we just need it to run its course. It will likely be weeks before this will be cleaned up. Hopefully with no additional complications I will be able to return home this weekend (we will see). Not to say this is good news but, these types of issues are not uncommon with transplant patients, its just a bit harder for us to deal with them because we are still “building” my immune system.

OK I will save the “peach fuze and progress” for another time.

Tony

69 Dude! (Bill and Ted's Excellent Adventure)

69 Days - Once again it has been a bit since my last post, but I have been trying not to jinx myself. You see, I just went three days without a clinic visit. It may not seem like much but it is a big milestone to not have to be seen by the doc's for three full days. It shows that things are stabilizing more and more. It doesn’t mean I am any better or capable- just more stable. This is good as it can lead to the lowering of meds (and adding a few) to make my clinic visits less frequent and shorter in duration when they do happen. I guess this all means I am getting better. Not to gross anyone out, but my biggest issue now is that my finger nails are preparing to fall off. Its a lingering side effect of the GVHD (when my hands were very bad) its effecting my ability to do things with my hands again. Typing and holding a book has become a challenge, AGAIN. This will be a short term issue but it is rather annoying. Other than that, my energy is starting to grow and I am getting a bit stronger as Karen and I try to go for nightly walks.

So the upward swing continues, its all good news.

Tony

Day +63 (Open that food pantry)

Hello all, my big news to report is that my diet has finally been released. What does that mean? I can eat anything I want, including dairy. I can’t go out to a restaurant or even order in a pizza (yet) but whatever I want to try at home is open game. I have been instructed to try adding only one new item at a time. So, yesterday we tried adding cheese and today I hope to add milk. We will see how it goes. Like I said, this may not seem like a big deal but it means a lot to my self-esteem and hopefully will make it easier to get in the 2,200 + calories I need every day.
I still have a real issue in that everything has a very, very high salt taste. Hell, I had jelly on a bagel the other day and all I tasted was salt (Yuck). The doctor’s say it should just be a temporary thing as the nerve endings in my month recover from the GVHD.  But they do admit that some people’s tastes change forever. Something that they used to love they can’t stand and other foods that they never cared for they now crave. We will see what happens with me.
So that is the big new, I can also add that we are in the middle of a two day clinic visit skip. I went in on Monday and not returning until Thursday, wish me luck. Two days is a big step.

OK later everyone. And THANKS!

Tony

A Basket of Sunshine!

What to say – How to say it ? We just don’t know how. Today Karen and I received a “sun shine package” from her friends and co-workers. It is such an amazing and thoughtful gift, once again it came just as we needed it. Somehow, people just know when we need a lift, but this gift is truthfully above and beyond what we would ever expect. Knowing you have these kind of people on your side can only bring you confidence and courage to continue on and be strong. Everyone’s support is what helps us remember we are not alone in this and that people are thinking of us and we will get through this.

It truly is impossible to express our gratitude for this gift and everything that people have been doing for us over the past few months. I don’t know how but someday we will “pay it forward” in some fashion, I promise.

ONCE AGAIN - THANK YOU EVERYONE  

Day +56

Just a short update. While things are improving in the gut area I am still having issues with my blood pressure. The doc's are sending me to a specialist but we can't get in to see them until the 19th. So I don't expect anything 'til then. The issue with my blood bressure is that it drops very low when I stand up- so low- to the point I cant stand up.  I have learned to stand and wait, as the dizzy/light headedness passes but some times it is too much and I need to sit down again. This may just be a side effect of meds and recovery but we need to check it out. Other than that things, are status quo. Oh, I should add that yesterday was a "day off" and Tracey and I did a bit of exercise and walked the isles of Costco for a bit. I have not been on my feet much so it was good (but hard) to walk around.

OK that's it for now, take care everyone.

Tony

Two days off- too much (Day +53)

So it looks like my body may have had a bit of Mayo withdraw as I am once again back at the clinic. It is turning out to not be that big of a deal but this morning I had three boughts of near fainting and had to fall to the ground. Karen was there to help and although my butt is a bit sore, I am fine. It appears that my blood pressure had gone too low: 89/68 and the culprit is fluids. We put so much effort in watching all my intake and still my body wants more. It is recommended that I drink a minimum of 68oz a day and yesterday I had 80+. Yet all indications from the clinic staff is my body wants more. They are doing some other blood work and stuff but it looks like just a big bag of fluids will turn things around. Maybe next week we can try again for 2 “days off”.

Tony  

Some Improvements Day + 52

Well things are still going good, a bit better than I personally had even thought. Yesterdays visit to the Clinic was full of encouraging news. For starters, my body and I earned the weekend off and we do not need to return until Monday.  I could make a habit of this. The second thing is that we are going to try and go the weekend without TPN assistance. That means I have to eat everything my body needs, 2,200 calories and 80 + grams of protein. Normally that would be very easy. In fact, I am sure I have had a single meal that had more in it than what is required. The hard part is that my gut and esophagus are still a mess and I am stuck to a very limited diet (no diary is the biggest issue). So we have our work cut out for us this weekend to make sure I meet the nutritionist’s requirements.  Wish us luck.  I could also mention that I did have an outing with Tracey on my first day off, we went to the grocery store and Target. It felt great to see and do things that once seemed so mundane.

So things continue to go the right direction, some parts are still slower than I would like but I see progress.

Tony

Day +50

OK I know 2 posts in two days when I said updates are going to be slow. This one is just to recognize that we have reached day +50, since transplant. That’s takes us halfway through the tuff part (the first 100 days). Its just another mile stone, but one I have been watching for. I actually think I can see the next 50 going faster than the first. Let’s hope so!

I also wanted to let people know, our freezer and fridge are full up (no more room). You all have been so kind and given us so much that we have run out of room to store anything more right now. With me on TPN and not eating “real food” there are only two people really eating all your glorious foods.  So if you could hold off for a week or two to give us a chance to catch up,  that would be great. We will let you know when we need the help again but for now we need to catch up a bit.

THANKS ALL!

Tony

Day off ! (+49)

This may not seem like much but Mayo just called in and said the doc had modified my clinic schedule. What does this mean? I have a “day off” no doctor, no drive in, I get to do as I please for a full day. I have been going to Mayo or in the hospital for 58 consecutive days now, so this is a big deal. Maybe a bigger deal for Karen and Tracey but still a big step for me.  All this really means is that things have stabilized enough that they doctor will not be making dally changes to my meds. It doesn’t mean anything has really changed just stabilized for a bit. I will go in the next day just as usual and we will see if a can add additional “days off”.

Just a side note people may have seen request for gas cards in the care calendar. Karen added this to give people (mostly out of towners) another idea to let “them help”. As they can’t cook (or visit) and what to help, this was just another idea. I am sure you all understand but I felt the need to explain.   Don’t get me wrong we are racking up the miles with 80+ miles round trip to Mayo. OK enough of that.

As Always THANKS EVERYONE!

Tony

Some Photos Day +46

Just wanted to share a few photos. The one of Karen shows an amazing gift from her students. It is a 1,000  hand made cranes. A Japanese proverb, if you make a 1,000 cranes your wish will come true. The other one shows our med table to give a visual for all that Karen and my caregivers are dealing with. Finally the one of me is just because I had a good couple hours.

Day + 45

Sorry its been awhile since my last update, but the big news is that I am home and have been for 2 days now. Like I have mentioned before, being home is a lot of work and it has really taken a big effort to get settled in again. With the addition of the Home Health provider visits and the TPN setup and take down every day, we have added to the stress and timing of getting everything in the confines of my limited day. As far as changes in my health- there is nothing really to report. The Doc's are going to ride things out for awhile and give my current meds time to do some work, so we shouldn’t be looking for anything spectacular to happen any time soon. As Karen has said “slow and steady” is progress. One thing to mention is, that they have upped my diet a bit more. I still can't have anything dairy or solid, but its a few more food options. You would be amazing how many “non-solid” foods contain dairy, think about it. OK that's it for now, don’t be surprised if my posts stay low for awhile as there shouldn't be much to report, but as soon I have news I will let you all know.

Tony

Day + 42

It is starting to look like the slow recovery process is working. At least enough so that they are talking about releasing me as early as tomorrow. We are still dealing with most of the issues and nothing is really going to change but my location. I will still be taking in food via TPN and all the same meds, they will just be from home. This comes with mixed feelings- on one hand it would be great to sleep/be in my home again (its been 20 days). In fact, of the last 50 days I have spent 45 in the hospital. On the other hand doing everything that is done in the hospital from home is a lot of work. A lot. In addition to doing the stuff at home, I will still need to make a daily visit to the clinic. Which in itself is a chore. We have an hour drive up to the clinic then get blood draws and wait about an hour to see if additional meds are needed, if so then administer meds (maybe 2 more hours), then another hour ride back home. Total average time 5 hours, and we get to do this every day Mon-Sun. Although I have gained a lot of energy, the clinic visit and home health tasks are going to take a lot out of me and my care-givers. We are willing to give this a try again but it is questionable as to how really-helpful this might be.

I just wanted to add a note here regarding care givers. You all know that I have Karen watching my back and helping in so many ways that I can not mention, but additionally, I have had my mom out for 3 weeks and now my sister in-law, Tracey for 7 weeks - both from Chicago. Their day to day help is so very hard to describe. Their help runs the gamut from helping with meds and getting dressed to just being in the room when I come to from a drug induced nap. I am so very grateful that they have been able to be at my side as we go through this process. THANKS guys...(thanks everyone...)

Day +39

It has been a few days now so we thought I should post an update. We had a few days of fevers since I last posted and they had been the big issue. My temps would spike around 102+ and always in the early AM hours. I know 102 is not that bad but when you are already in a hospital bed for 10 other things adding heat to things doesn't help. It made it nearly impossible to rest (let alone sleep) with all the creams and lotions all over my body treating some of the graft verses host disease (GVHD). So getting your skin hot and trying to sweat under the stuff puts things on a whole other level. The docs have adjusted my meds and we are happy to say that I have not had a fever in over 24 hours. In fact the docs have made quite a few tweaks to my meds, first off they removed the order for all the lotions (and potions) and second they have changed most of the medicines from IV to oral. I don't want to presume too much here but last time that was the indicator of a ticket home. I am still on TPN and only allowed to drink fluids but we hope to work on that in the coming days. I may have to go home with the TPN. Man, I am starting have some real cravings for solid food, its been 16 days of the TPN stuff. Oh, one more med was removed - the “pain” med I had been on - continous drip of fentanyl- since I got here so it has been interesting to just be cut off, but things have been fine without it. OK time for a nap, thanks everybody for EVERYTHING - talk again soon.

Tony

Day +34 - Tony here again!

No big mile stone or anything today, just an up day. Things are still progressing in the right direction, although seems very slow from my point of view. The biggest thing is that I have some decent usage of my hands and eyes, enough so that I am able to type this post myself. I added two photo's to try and show what my hands have been looking like (my eye's looked about the same but we don’t have photos).  

OK just a rant here. I always knew that there would be a chance I could spend some serious time in the hospital as I went through this process but I just didn’t think how it would happen. I told myself that if I need to stay in then I had tons of things I wanted to do. I would put in a few hours a day of remotely working, read a few books I have been saving up, learn and play a few computer games, research and plan out activities for when I was healthy again. Unfortunately, I don’t think I really could have prepared myself for any of this. Like I said above, things are going in the right direction and I am truly happy for that. Just having some use of my hands and eyes is having a big impact. I know my hospital time of only 35 days total, is nothing in the grand scheme of things but for today, for me, it feels like a lot.

That's enough ranting for now, I am switching back to the positive mode and ready again to capture all the positive vibes (and well wishes) you are all sending, please do keep it up. I know you are all rooting for me and just the knowledge of that helps in ways that words can not describe.

Thanks Everyone!

“We measure progress in weeks” Day +31

Karen again. Tony is progressing. We have not updated in a few days, because the progress Tony is experiencing is incremental by day. But from 1 week ago, when he was re-admitted, he is certainly improved, but not at all back to what he was when he was initially released. His eyes are slightly better, his hands are getting usable again, but his “gut” is turbulent.

Doctor S sees him staying in the hospital another week, maybe a little longer. We'll update again in a few days! Keep fingers crossed for continued forward progress – measured weekly! :)

Care-giving too well??? (Day +26)

There is such a thing as being too good at taking care of someone. Or so the Doctors are telling us. Apparently, if Mom and I were not such good caretakers, the Mayo would have had Tony back in-patient several days sooner. This did not make Mom and I very happy when we heard it yesterday. In fact, we cried. We feel like we made the situation Tony is dealing with last longer because the doctors had so much faith in us. We made it worse.

OK, we know that is not REALLY true, but...

Tony has been In-patient now for 2 days. The doctor is quite sure we will be seeing progress, Tony will be feeling progress, but it is going to be SLOW! Even now, when Dr. S and our PA look in Tony's mouth, they can see active healing and this is good!! However, we are ministering to Tony most of the time that we are at the hospital with him. He has large amounts of liquid coming out of his eyes that needs to be cleaned away, gently, and then he has 2 drops and 1 salve to put in his eyes. (we can see improvement there since Friday) Then his lips are cracked and ulcerated, so we clean those, also gently, and apply a vitamin salve. (we see improvement there since Friday as well) He is getting several salves on various parts of his body and a wound care specialist is looking at an additional one for some painful sores Tony has in unmentionable places. So, we are lubing him up several times throughout the day. The Doctor also says his skin rashes look improved. Again, the improvements we see will be incremental and slow, but improvement none the less!

He will be on IV fluids and nutrition for at least another 2 days, if not more. Initially, I had said he would be in the hospital 'til about Friday, but its possible it will be longer. We will see.

Our big drama today was about an enema. Tony is going to have some scopes done- upper and lower GI- and normal procedures are to get an enema before hand. Well, one of Tony's unmentionable places is where an enema would be administered and where the results would come out. This is not the time for additional, painful things to be done to that area. So, we all were stressing out for part of the day because the GI Doctor seemed to be insisting on the enema and Dr. S. had told us earlier that is was not necessary. Sooooo, Dr. S. to the rescue! No need to put Tony (and us) through such a potentially painful and embarrassing procedure. So, now we just need to deal with the possible pain and discomfort of the GI scope invading that oh so painful and private region! :)

One last thing - check out the number of pumps and bags and tubing running into Tony!

Day +24:

Well, we were told it was possible that additional in-patient stays would likely be necessary. Today, that became true. For no “bad,” scary reason, Tony's Doctor decided to admit him today. She thinks he'll be in the hospital 'til Friday. This is Tony's “real” doctor, Dr. S. We LOVE her!!

OK, here's the story. We mentioned recently that Tony has mild Graft v Host disease. Well, now it is moderate. Still nothing for alarm. We went for our normal appointment today and learned that Dr. S. is the Doctor for this coming week. She planned on stopping in to see Tony while he was there. The nurse determined that the sores in Tony's mouth are blistering. For the past 2 days, Tony has not wanted much to eat AT ALL and has had little to drink. So, a few hours into the visit, Dr. S. came in. She did a physical exam and spoke to Tony quite a bit and determined that the best place for Tony is in the hospital. She thinks he might have developed GvH in his “gut” and so she wants him to be on IV fluids and IV nutrition. (For you healthcare people out there, that is Total Parenteral Nutrition) (for you non-healthcare people out there what that means is this: All of Tony's liquids and foods will be bypassing his stomach and even his intestines and will be going straight to his veins.) This will give his “gut” a chance to relax. Also, then, Tony will be receiving almost NO medicine orally. Once again, to give his “gut” a chance to take a vacation. The goal with this hospital stay is just to give his body a break so it can focus on healing. We are hoping he will take every opportunity to use the medicine and skills of the nurses to do just that!

As for Mom and I. It is almost a relief because hard as we tried, we were not getting everything he needed into or onto him. Its a fine balance between pestering and caring. Now the Mayo can deal with that balance for a few days.

Thanks again to all for your support, seen and unseen. It means more than you can possibly know.  

Day +22

(Karen here) Most of you know that my Mother-in-law is in town to help Tony and I with this scary first few weeks. In some ways, Tony and I are barley holding on. Without my mother-in-law, I'd be in a loony bin and Tony would be in the hospital. I am working. She is going to the appointments with Tony, administering his medicine, talking with the doctors and nurses, feeding him and keeping herself (and us) sane. So, a big shout out from Tony and I for such a remarkable, loving Mother (-in-law)!

Tony mentioned yesterday that he would like you all to know a few things. First of all, as of 7:30 this evening, Tony is on 27 prescriptions (not including infusions from the Mayo) and various over the counter aids. Many of you are probably saying “WHAT?!?” Yes, 27 different medicines, one of which is 7 pills per dose. This leads me dramatically into the second thing we wanted to mention. There are several mild to moderate things wrong with Tony right now. My Mother-in-law really wants to be sure all of you avid readers out there have a better understanding of the challenges Tony is facing. OK here goes:

1: The skin rashes, you all know about.

2: Graft vs Host disease causing Mouth and throat sores.

3: Graft vs Host disease causing excessive, sticky discharge from the eyes resulting in mild vision impairment.

4: Graft vs Host disease affecting the nerve endings in his hands.

5: A skin Biopsy to rule out anything not Graft vs Host disease causing

6: Elevated Liver enzymes causing them to keep a VERY careful eye on it resulting in the tweaking of his medicines every few days.

7: We won't go into all the other, littler predicaments.

Now, this might be a little bit of a downer after yesterday's celebratory air to the blog, but we keep telling everyone that Tony is “Ok” or “doing fine” while we are dealing with so much. We think its important for our loved ones to have a better understanding of all this.

Thanks – Love you all - :) Karen and Tony

Day +21

Hi! Karen again! Tony is still doing OK. He just has minimal energy levels.

The type of challenge Tony and I are facing really calls for a positive attitude. We work hard to see the good side in each stage of this process. You guys help us too, with your prayers, vibes, thoughts, well wishes and such. A friend of ours helped us be positive yesterday!  He pointed out that - 

We hit day +20 yesterday!! That's 20% of the way through the truly hazardous part of this transplant. Wooo, hooo. 1/5 of the way there! Everyone take a quick minute to breathe a sigh of relief, do a little jump of celebration, and raise your eyes up to heaven in appropriation.

OK, now, what are you thinking? Cerebrating already??? Who gave you the idea it was time for that? We still have 80% of this trip ahead of us. Back to work!! Start the positive energy highway back up again!

Thank you all – Love you all = Karen and Tony.

Day +18 - What it means to be “Home Again”

Hey everyone – this is Karen. Tony has been home for about 48 hours. 

We wanted to clarify something with all of you. Since we said Tony would be coming home/came home, some of our loved ones have said “good, then you're done, right?” We have to reply with a resounding “NO.” Being 48 hours into this “home again” situation, I can tell you all it has really only just begun. The pressure and tension is so much on us at home now instead of the folks at the Mayo. Tony has had a SUPER day – Friday, and a terrible day – Saturday thru Sunday morning. We HAVE to go back to Mayo everyday so they can take his blood, give him supplements like Magnesium (because his anti-rejection drug uses up whats in his body) and fluids and things like Prednisone via IV. Each day, the Nurses and Doctors need to “read” Tony's blood results and “look at and touch” Tony to figure out how to keep him healthy and comfortable. These next few weeks are going to be VERY difficult. We have a lot of info coming at us from the medical people, a lot of questions to answer, and the constant worry.

Overall, Tony is doing well. Friday night, he began to develop a rash on his torso and his hands felt funny. Last night, his hands got a lot worse. He said it feels like he has sunburn under the skin.

The Doctors and Nurses think this rash is probably a little bit of Graft versus Host (GvH) disease. (This is where Tony's body and the new Stem Cells clash a little bit because they are not biologically the same.) A little bit of GvH disease is actually good. I won't explain it perfectly but think of it this way: The New Stem Cells inside Tony NEED to go through something of a “Boot Camp” as they settle inside of him. The doctors say that these transplants go SO MUCH better when the body and the new cells fight with each other a teensy bit – at the beginning! So, Tony has a rash and mostly cannot use his hands right now. He received salve yesterday and high dose prednisone today. He is perking up just a bit and he got the prednisone about 4 hours ago.

I have said to myself since this began that we just have to take one day at a time and that is true now more than ever. Right now, this journey feels like the path of a screw. We are slowly spinning in tighter and tighter. The worry, stress and pressure feel like that right now. One day at a time. Some days will be pressure and worry filled, others will be like exhaling after holding our breathe too long. As time passes, we'll have more days that are exhales than winding screws.

Hopefully, I am not waxing too poetic for all of you. We are in the thick of it now and, will manage. We're grateful for each other, for everyone's support and for my Mother-in-Law being here to help. It all is making such a difference!! Thank you, thank you, thank you!

Home at last.

Well we did it- after 25 consecutive days in the hospital, I am finally out, and tonight I will sleep in my own bed. It is nearly impossible to explain the enjoyment I have in just thinking about being at home and sleeping in my house with my things. As usual, I am beat, and even though we have been home for 4+ hours I have not been able to enjoy it very much. We will return to Mayo tomorrow at 8am for blood work and IV medications, but at the end of it, I get to come home again. Yeah for me! More to come.. please stay tuned.  

Day +15

My counts are up and my fevers are gone … “all systems are a go” for my departure tomorrow.  I just wanted to send something out to let everyone know that things are still going better than planned and we have started my discharge process. I currently have no IV connections and have been weaned off most of the pain medications, prescriptions have been sent to the pharmacy and Karen and Mom have attended the required “care giver class”. We have a lot more steps to complete tomorrow but it is looking good.  We will soon begin phase 2 of the 100 day journey.   

Day +13

So things are starting to look up. My blood counts have improved dramatically over the past 48 hours and its likely that I will have them all in the range required to be discharged by Thursday or Friday. I still have the obstacles of dealing with pain management and daily fevers to make this happen but we are on the right track. Most of the pain should improve with the continuing increase in new cells, the old cells in some parts of my body just do not exist any more and they need to be rebuilt and put to work. As for the fevers, that may just be the way my body is dealing with all these old and new cells trading off- they just might be around for awhile. I will do my best to update the blog as soon as we know something official, so keep on checking in.

I also wanted to say THANKS once again to everyone, you have been so very warm with your thoughts and prayers. It REALY helps to have such a great cheering team behind you.

Day +6 thru Day +11

Hey all – this is Karen again. Tony is fine. Sorry for the long delay in getting a message out. I know we told you all this is how we would keep you posted and then a week goes by without a peep from us. Well, that must mean we don't have much to report and as Gary Gnus used to say, “No Gnus is good Gnus” :)

Tony has spent the week dealing with pain in his “pooper” - Kind of like hemorrhoids on steroids. (Caused by last week's diarrhea.) This pain has been so terrible that he has been given several different kinds of pain meds to help manage it. The pain has been so terrible, that he is clenching his muscles so hard that for the last couple of days he cannot pee, either. The pain has been so terrible because he cannot heal.

None of this is dangerous or monumental, but it is ceaseless, constant discomfort. He has not been in an awesome mood, but is keeping a pretty decent attitude considering. We all knew this would be hard, it is just the different ways that it is hard that is keeping us on our toes.

For all of you loved ones who are far away and feel helpless. I think it might be just as hard to be here watching the pain and discomfort with nothing to offer but your hand and a smile. Companionship and love are wonderful, necessary parts of this process for Tony, but this week has shown me how hard it is to be inside of it all but outside at the same time.

So, to recap – Everything is progressing as it should. The Doctors are looking for Tony's cell counts to rebound in a few more days. He is managing as best he can; taking it day by day. I am doing the same. Keep sending healing prayers, thoughts, good juju, and Dark Chocolate (jk) our way! Love you all!!

Tony is a bottom-dweller! (Day +5)

Just kidding. But his numbers are getting down there and in particular, his neutrophils are so low the lab cannot even count them! What does this mean?? Its good. It means we are progressing according to plan. It means, now the stem cells have a chance to take root.

There are many goals in this process. Many of them are obvious. This one may not be as we are getting a lot of questions about it. The doctors need Tony's numbers to be bottom-dwellers because the stem cells, that are 5 days old in Tony, need an empty space to take root in. The transplant nurse explained it like this: Imagine the cancer Tony has as weeds in a beautiful garden. The weeds were choking out the good growth – flowers and veggies. The chemo is the weed killer. Unfortunately, it does not just kill the weeds, it kills the flowers and the veggies too. The stem cells are the seeds for a new, fertile, healthy garden. Right now, at day +5, we are waiting to let those “seeds” germinate and begin to sprout. This is gonna take about 5-8 days, maybe more.

So, Tony is a bottom-dweller, but he needs to be and, SOON, he will be a brand new garden. :)

BTW- he is good. I am just writing the blog because I am excited to try to explain it to you all!

Day +4

Hello all, just wanted to let you all know that I am doing well and have been feeling pretty good the last few days. We have not posted anything on the Blog as there really has not been much happening. At this point everything is a waiting game. For now we are waiting for my immune system to be completely removed. The indicator for that will be when my white blood cells get to zero (currently we are at 0.5), which should be tomorrow. After that we wait for the new t-cells to “engraft” and start producing their own white cells (and stuff). This is not an exact science and we can not be sure when this engraftment will begin, nor what might happen when it does. There is a whole myriad of issues that can come up once the process begins but I am not going to speculate (even think about ) that for now. What we have to do now is NOT GET SICK. As you can imagine with no immune system I am susceptible to the smallest/simplest infection and the worse part is that I have nothing to fight it off with if I did get something. So we are doing our very best to keep everything as neat and clean as possible and just slowly work through the next days. This process could take less that 2 weeks or more than a month, we just don’t know. For now I need to keep working on my energy, without new cells growing I have nothing to burn/use.  

Day +1

Earthquake Tony is past for now.  The last fever was over 24 hours ago.  The fevers really took a bite out of his energy reserves.  There has been more nausea, but sleep is helping with that.  This evening, Tony is more energetic, lively and interested today.  He has been helping me get a computer program for sharing files between our phones and the laptop and he's helping me with this Blog. This is good!  For those of you sending emails, texts and calling, Tony is really only awake for 2-3 hours a day, right now.  So, I am reading him your messages but he is not replying to them right now.

Dominic and Jackie (our nephew and niece) are Rock Stars around here.  Apparently, the nurses have never had anyone make a paper chain to count down the fist 100 days after transplant and the nurses are WOWed!  In case you don't know what a paper chain is, you use it as a count down!  You take off one link each day to count down to your goal.  Dominic and Jackie decorated 100 links, connected them and mailed them to Uncle Tony.  (OK, Angela helped with a lot of it.)  Tony and I hung it in his hospital room, so he can look at it and every day we will take off a link and put it up in the room.  I took a picture for everyone to see.

Day Zero - Got the Cells

Picture 1 - Got the Cells - Thumbs Up!              Picture 2 - Every Last Drop!

Day 0

Greetings and salutations loved ones! (Karen here again)

Well, it is Day 0! The Transplant went off without a hitch. (I am not a fluids and ooze kind of person, but for those of you that are, boy was it a cool day. The Stem Cells looked an awful lot like dark colored Campbell's Tomato Soup). (Ugh!!) The transfusion took about an hour. We had a chaplain come in a few minutes before and say a few prayers and a few blessings. She was no Father Carl, but it was nice and simple.

I wrote yesterday that Tony has been having some fevers. They come and go as the Tylenol works its magic and then fades away. Its hard because he has tremors and they really hit him hard. They take a lot of energy! But the nurses are great and have the ability to give him many different meds to try to alleviate all the discomfort.

Everything else is looking good. We are hoping the fevers will fade completely in the next 24 hours. Tony and I will keep you posted! When he is feeling more energetic, then he'll help me post the pics of the transplant.  

Day -2 & -1

Day -2 & -1:

This is Karen checking in today. Tony has not had the greatest of experiences these last couple of days. His 2^nd kind of chemo was hard on his sinuses. Sunday evening he started to have bad pressure in his head and it escalated to a 7 out of 10 on the pain scale. Monday saw him with less pain but unable to rest and some nausea. Monday night was restful but Tony started his anti-rejection drugs Tuesday and it has not been pretty. He is getting a drug called Prograf, and in the interest of making everyone feel like they are here – There is a sign as you enter his room telling the nurses “PROGRAF CAN ONLY BE ADMINISTERED THROUGH THE WHITE PORT – IF ADMINISTERED THROUGH ANY OTHER COLOR, THE PORT IS CONTAMINATED FOREVER!” I especially like the emphasis on forever! Basically, this is a drug that needs care. Tony is also getting another drug called ATG and apparently this is the cause of his terrible day!

He is suffering from chills, fever, muscle spasms, pain, nausea... (Right now he has a fever of 102.8 and he has 5 ice packs positioned in various places on his body.) These are all expected side effects, but the fever is worrying.

Tomorrow is DAY 0! As things stand now, nothing going on today will stop the transplant. As I said above, while stinky for Tony, these are all expected side-effects, so GAME ON! We'll post again tomorrow!

Day -5 - 4 and Day -3

Just a update for today. I have competed all 16 doses of the Busulfan and have begun the second regimen of chemo- Cyclophosphamide. This one is a bit more of a doozy and should knock off the remainder of my immune system. Yeah! That is not even the fun part, the fun has to do with over 1040 ml of chemo and fluids that are going through me every hour. I should just set up shop in the bathroom for the next 2 nights. I can't go more that a ½ hour without a pee break. Other than that, I am handling things OK, I get a bit more tired everyday and it takes longer to recover but as I have been saying, if that is the worst of the pre-transplant stuff then I am lucky. Next step-- the transplant!!! (but that's still 3 days away).  

Shower prep for a transplant patient

As you can see everything takes a bit more time. As you might tell showering is a hole lot of fun.

Day -7 and Day -6

This has been a busy 2 days- even though it will not sound like much to you all as you read on here. Anyway, we started the first of the 2 chemo regiments gearing up for the transplant. This first chemo is called Busulfan and according to the literature I was given it “is very strong”. In fact, it goes on to explain how the drug works “Busulfan harms cancer cells causing their death” (I am not making this up) so one would expect that I should feel like crap. Well, I am happy to say that has not been the case. I have had bouts of extreme fatigue, it just kind of comes on me. One minute I am sitting up reading something and the next I need to close my eyes and lay down (funny isn't it?). Even with the fatigue and, trying to keep in mind it is still early in this regiment, I can say things are going better than expected. I will continue to get the Busulfan for the next 2 days- for a total of 4 doses. Just to clarify a single does is a 2 hour IV drip repeated every 6 hours and we get to repeat that for a total of 4 doses over 4 days. As I write this I have just finished bag number 7 (almost half way). So things are going well and I am pretty much settled in (Karen brought in Diet Pepsi, and that helps). I had hoped to have a routine by now but there are just so many variables that I just can't be sure what is happening when, I am sure we will figure it all out in time.

After this I move on to chemo number 2 but I will leave that for another post.