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