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