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!