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.