A NOTE FROM CHAD

Im grateful that anna would put together al of the things that have been going on for the past few weeks.  While I like to write I have found my thinking is not as clear in the past bit than I like.  It has been an interesting experience to require such huge doses of morphine to simply stop the aching and pause the tears.  The mucositus has been well probably the most acutely painful thing I have ever experienced.  The pain meds have been pretty good at covering but it never ceases to amaze me what those moments, minutes, and hours between the pain increasing and the dose increase orders being written, really can be.  The tongue is in a more manageable place but I can tell my gi track and stomach are in the beginning of a very long path.  Other than that I have spent the past 6 days now asleep around 20 hours a day.  It is a crazy thing to actually ache from the fatigue.  I know with my counts rising I will soon have more consciousness and defiantly look forward to that.

                Each day I try to get a little out of bed time.  yesterday I walked a few laps and did a few steps on the set of therapy stairs they have here.  I have to say the walking even just a lap or two around the floor is much more taxing than normal chadwalking it is much more reminiscent of trail running, or the energy required for a mile run per lap.  Crazy that in just a few weeks what the body struggles with.  On the other hand I am grafting (taking in a new cell system)  I have to say that it does feel like that is more taxing than I had even thought were possible. 

                Its an interesting thing to finally be at the bottom of that trench I kept running next to for so long.  The view is not quite what I expected, its quieter here than i thought it  would be.  Its like that deep silence that comes when you lat at the bottom of a pool.  Its as if you start believing that the outside world is not tangible like this new found place is that of solitude, though its not.  I am grateful that here in this place I have such friends that pray my safe retrieval.  I am eternally grateful that I have a wife that sits here with me with eyes that still shine with the knowledge of what I will be after this, and not swayed by the day to day or the numbers that will be. 

                I guess this is about as good as it could have been to go off of the path of normalcy or of life, and drop into this transplant.  I couldn’t imagine a softer fall, though it has been great and in no way easy.  I am constantly reminded while I am here at the Mercy that is had for me in being able to survive it in this fashion.  I think of the families that have prayed there sons, daughters, brothers and sisters through this great fight.  It is a beautiful thing to feel that energy here, that we are in this fight together, that all of those prayers do not go in vain.   I can feel a great weight that comes from being blessed and allowed to live through this.  I have watched so many suffer greater pains in this battle  and in their goodness find that their path was not to be finished here.  Each day that I find myself suffering I count myself lucky that at least I am still able to fight and that I am just so grateful for all those that continue to choose to fight with me. 

                So for the next few weeks I will work each day to walk so that I can keep my lungs clear and my gi track healthy and moving.  Other than that I will rest and pray with all of you that my body takes well to the new cells that are taking root within me.  Don’t worry if your wondering if things are hard, they are.  If you r wondering if everyday for a moment I will shake with all of my being in this fight, be assured, I will.  But also know this, I am still here, I am still fighting.  This I believe is not my time, and if it were there were plenty of ways I could have been done before.  This is rather a great time to fight, a great time to learn to live again, and wonderful time to count the blessings that are still being poured out.  Please know of my gratitude, thank you for the calls, texts and messages, they still have such power with me.    And as always : Have Heart  C is Still for Chad not Cancer

REACTIONS

It wasn’t too long after the transplant that the effects of everything started to set in. The reactions of fatigue and pain, nausea, and mucositis began to set in. chads insatiable appetite subsided and his ability to eat, disappeared. His mouth began to get sore and then his tongue began to swell, sores formed and the inside of his GI tract was experiencing the same things. The only visible portion we had was the tongue , but the pain ran through and so chad was placed on a morphine pump so he would receive a certain amount each hour, along with the freedom to use a certain amount every ten minutes. This amount was increased each day as the pain increased. He spent most of his time in a transitory state of being in pain, and drugged and tired, but unable because of all the meds he was on, I felt so bad for him. He constantly suctioned saliva from his mouth because of the pain of swallowing, he was placed on iv  food and told to just take as much morphine as he needed to be comfortable. Some days that was possible, but nights that was especially hard because he would wake in pain, so he experienced many sleepless nights , that in the last three days has started to make up. Because his counts were so low he had blood transfusions to increase his hematocrrit levels and platelet transfusions to increase his platelet counts. Anyone that knows anything about chads medical history knows that that means lots of Benadryl to avoid platelet reactions, lots of steroids to do the same things which in turn equals a more drugged chad, but one that can breath. He had a couple of minor reactions, but the nurses did a great job of keeping them under control and watching closely so nothing got out of hand. When he had trouble breathing after they gave his breathing treatments which cleared things up. Because it is hard to get out of bed, chad has been meeting with physical therapy to keep him moving and mobile. He has had a few fevers, but were able to be kept under control. In the last couple of days chads counts have began to come up on their own, everything is increasing which means healing. His mucositis is subsiding, his body is healing, morphine is decreasing and sleep is increasing. In the midst of all the platelets and Benadryl and morphine chad was unable to sleep at all for a good four days or so, so I think his body is experiencing withdrawal from less opiates and has realized that he has just been hit by a few trucks and should probably heal from it. And the great miracle is that it is. He is engrafting, erins cells are reproducing and beginning to heal chads body. It is such a miracle to watch this happen. It is the beginning of a very long road, but we are on the right one. Chad has done great, he is strong, and positive and the thing I love the most is his ability to share happiness with those around him that are going through the same thing. We had many visits this past week from fellow patients that are young adults as well and to see how they impact each others lives is amazing. As sucky as all of this is, it brings people together, makes people throw themselves on their knees, and lets you see aside of people a side you would never see otherwise. It makes you appreciate life, and love moments, it makes you slow down and see the importance of a single touch, the power of a hug, and the huge change simple words can mean.  And for me it makes me realize how un nurturing I am, but is teaching me rather quickly what it really means to love and nurture.  It makes me laugh some days to see how well god knows me and others and He gives us different experiences that teach us how to become more like Him. I will try harder to keep you more posted and up to date…sorry. Chad is sleeping, like he has been for the last 3 days and off IV food, but still not in taking very much a cup of jello or two, so that is the next step, he needs to be able to eat, move, drink, and take pills by mouth before we get out of the hospital, but it is all just the beginning, but we are grateful that it has gone so well.  That is easy for me to say not being the one that has gone through the excruciating pain, and discomfort of all of this, but our gratitude comes from the huge reality of how bad it could have been. We are keeping our fingers crossed that the blessings keep coming and the next year of this continues to go better than it can be. Thanks for your prayers and love, we love you all. Happy Fourth, we slept through it! 

BEGINNINGS OF SKIN SLUFFIGE....IN THE REAR OF THE MOUTH, A SMALL GLIMPSE OF WHAT IS GOING ON IN THE WHOLE GI TRACT.

GOTTA LOVE PAIN MEDS!

MUCOSITIS = IV FOOD FOR AT LEAST A WEEK, STILL ON IT.

TRANSPLANT

Erin came and did amazing, she was able to come up and see us on Sunday and then early Monday morning she had a port placed in her neck where a few hours later they removed her stem cells and then saved till the next day for the transplant. She did amazing, and we were told by the docs that she had robust cells, so we were all quite happy about that. The next day chad was again pre medded with Benadryl and received his transplant. He laid in bed, sleeping while the hung her cells and allowed them to slowly transfuse in. it seemed just like a blood transfusion. To anyone that has ever experience d or seen one , it is pretty anticlimactic, but knowing that this was going to save his life, made the experience different, he slept, I watched and was grateful for the blessings of medicine and people that dedicate their lives to finding treatments, I was and am grateful for all those that sent love and prayers on this day and all others and I was grateful that this experience potentially gave my husband a longer life on earth to spend with me. 

JEFF CAME AND VISITED US, WE LOVE HIM! 

I LOVE HIM!

AFTER ERIN CAME AND DONATED HER MARROW.

CHAD AND ERINS MATCHING PORTS.

NEXT DAY ERIN CAME TO VISIT IN A COOLER...OKAY NOT REALLY JUST HER CELLS. THANKS AGAIN!

THE PRODUCT OF BENADRYL.

DURING THE INFUSION.

ALL THE NURSES CAME IN AND SANG HAPPY BIRTHDAY TO CHAD ON HIS NEW BIRTHDAY, WE LOVE ALL OF THEM!

HAPPY BIRTHDAY CHAD!!! HIS VERY OWN CAKE!

RADIATION

Sorry about the lack of Blog updates in the last most important parts of all of this, I blame that on myself sorry. It seemed like I just kept putting it off and finding other things to fill my time with, journaling and recording what is going on seems to, like always in my life,  seems to be consistently placed on the back burner. So sorry to keep you all in the dark because of it, but we will fill you in. So we checked in on the 14^th of June and started it all. I think in the past blogs we got to Day 2 well a lot has happened since then. Chad had a week of full body radiation that he handled in all witnesses eyes incredibly well. He was nauseas and handled it by eating French fries and mcdoubles. Not like the most of us would do it, but we all know he doesn’t do things like the most of us and that is why we love him so much. So I made countless run to McDonalds, met some friends there each time, in fact one day met a couple from Germany and was able to practice a bit while we waited in line for 15 minutes, brought me some joy. Here are some pics of the radiation. It was morning and evenings for a week. Then after that was all over, chad received an incredibly large dose of chemotherapy, that is meant to be the next big gun they bring out to zap this thing. That again he handled amazing, he was drugged most of the day on Benadryl and when he was awake he ate mac and cheese and chili to curb the nausea. The nurse couldn’t believe it and just looked on in worry and disgust, I think mostly because she would rather pick up regurgitated crackers than mac and cheese and chili, but he kept it down and all onlookers were again in amazement at his ability to handle such a task. The dose lasted four hours and the nurse was in about every 15 minutes to check his vitals for possible problems, but he did great. He then had two days where he got to rest if you can even call it that, it was two days where they didn’t do anything else to his body. 

YUM MC DONALDS!!! CAN GET YOU THROUGH ANYTHING!

LOVE CAN GET YOU THROUGH ANYTHING!

ARM BAND....CAN THEY GET HIM THROUGH THIS?

YES!!, USED TO HOLD LEAD PLATES IN PLACE TO BLOCK CHADS LUNGS.

HARNESS USED TO HOLD CHAD IF HE FALLS OR PASSES OUT DURING RADIATION.

STANDS HERE MORNING AND NIGHT FOR 5 DAYS 20 MINUTES EACH TIME....

WHILE THIS RADIATION GUN IS USED TO ADMINISTER THE RADIATION.