Let It Begin

I thought today it appropriate to give some words of what has been going on and try and relate to you my gratitude for the steadfastness of a no less than remarkable team.

                A little over two months ago the words came “relapse, 50 percent count, transplant”, and so on and so forth.  As I think about the days that unfolded after those first few phone calls there are obviously moments where it would be impossible to not remember the attached feelings of sobriety, dread, initial fear and as to the meaning of the timing of all things. 

                However these are not the feelings that I find myself talking with Anna about, sharing with the nurses or docs or with you, because while they were a part of the process they were not and are not the defining moments of my path.  Rather I have thought about the way in which each of you have held me through this.  That as I have come to you with my experience, you in return give back to me beauty.  From words, prayers, stem cells, or just physically holding me while I have shaken in pain,  you have been there in any way that you could to support.  I cannot say there has ever been a time when I have ever felt such love from so many and I have to say in it I can only sit here today and give thanks to an all loving God who knew and knows what it is exactly that I and each of us need. 

So what will happen next.

                The past eight weeks have been riddled with days and weeks of chemo, reactions, and planning.  Since April I have been on a path of remission preparation, and finding a match.  I have to say for as grueling  as chemo can be this trip has been really just better travelled.  Better company, much better life circumstances, a stronger team and a more confident patient.  Remission was reached by may, my sister has been found to be a perfect match and all of the spinal fluid has been clear.  All of the prep, the work and the foundation has been set, and We are here. 

                                 This week has been the final destruction of my bone marrow via 13 doses of full body irradiation.  This is the first of 3 methods to create a successful transplant.  In just a few minutes I will begin my premeds for the largest dose of chemo given at one time.  it is the dose that generally takes a couple of weeks to fully administer but it will be given in a 4hr shot to make the greatest impact on my system.  By Monday I will not have an immune system, the marrow to recreate one properly, and then we will head into transplant on Tuesday.  The process on Tuesday is another transfusion and I fear the hardest is on my sister Erin, who will have to have a port placed and various other injections to boost her cells.  While she will be the first to tell you this is not the biggest deal or that of course she would do it, I pray she knows that in being my chance for a survival, I am more grateful than she will ever know.

                So once all three steps have been performed, it is as they say where the odyssey begins.  Every case, and patient are different but for all a year commitment for rehab is the minimum time frame needed.  I could sit here and tell you of all the reactions, other diseases, and possibilities of what may come but it would only I fear dishearten.  What I have figured out is this.  For the past few years my body has not been able to do this whole survival thing on its own.  While for the next season my body will be under the greatest attack of all, I have the chance to not just continue living but to live with more hope more love and more knowledge than ever before. 

                And so we are here.  I am sure I have riddled this blog with so many prefaces, and explanations but now is the time.  I thank each of you again for your consistency, I pray to continue to have it as my companion.  I thank God for the miracle of marriage, for the Love He has for me and the life He has given me to fight for.  I pray for Anna, am renewed by her love, and am so grateful for her choice to be share in this with me.  And to all of you that carry me, I pray that you are able to find the peace that I have.  I pray in even in this I may remain as steadfast as the loyal here.  

Thank you for everything, and as always: Have Heart, C is Still for Chad Not Cancer!

-C

    

PRETREATMENT

Pretreatment
Starting in the next few days I will have “profound fatigue” from radiation which will leave me in bed fighting for the energy to move. Quickly following will be the day of chemo, one of my last ones I pray. It is enough that it requies several large doses of fluids and both 100 mg iv of benedryl and a few doses of hydrocortozone, just to keep my body from the many side effects. Then two days later I will have the transplant which should be the easiest procedure of all a wonderful transfusion from Erins healthy bone marrow. From there I will enter a few week period that will be undoubtedly the most difficult my body will ever experience. The pretreatment of that particular chemo dose (around 1 week or 2 in one session) and the radiation it creates a regimen that will be the most aggressive thing I will ever go through. For a couple of weeks will most likely find myself on IV food as well as a morphine or higher, drug pump. The cell death and sloughing of all GI and Mouth cells along with the other side effects will leave me in a very vulnerable place to say the least. After a few more weeks of dealing with the major organ meshing issues with all of the treatment I will be sent home to be on house arrest and in critical care under the 24 hour care of a nurse and team that I will check in a couple to several days a week. This will last for a year or more. The severity of reactions depends on the Graft Vs Host GVH, the radiation related issues, and the response to that much chemo. The odds and numbers have all been discussed and while we all wish for a golden cure at this point I am grateful that though the survival is a steep climb with not much Intel for ease or success, I have gratitude in my heart for the faith I have and the faith of a loving support system. I am also grateful that instead of another guaranteed expiration date without treatment, I am headed for the possibility of some good years, managing whatever may come. It has also given me just that much more understanding of a purity in love. While Anna has always known the odds, and the fight that could be, taking on this battle with me is really one of the greatest signs of love I have ever experienced. I am so grateful for and to her for her diligence and courage. And to all of you who are here for the fight I give you my gratitude and love. There is nothing easy about the path we are continuing. The fact that you are here even reading is a sign of not only my reasons for fighting but a sign that Love exists and is powerful. Thank you always, please pray with me in this next bit as it surely will be the most dangerous time of my life. And always have heart C is still for Chad, - love

DAY 2

Day 2 (6.15.2010)
So I thought I would give anna a break on day 2 from writing but am so grateful for her really great ability to share our life and love. Um so day 2 consisted of two doses of full body total body irradiation (TBI). So a little more about this process, if you were wondering, its pretty intense I have to say but it has a great team that manages the floor and are great about helping in all they can. So the idea with TBI is to destroy ALL of the bone marrow in my body. For this there is a procedure of standing in a metal cage like apparatus. It has all these hooks and chains like a torture chamber but is less sketchy when they wheel out the tv and ipod player. Anyway so I stand in my skivvies and put on a chest harness which allows lead blocks in the shape of the top half of my lungs to hang on my front in back. They then turn on the machine and from across the room I have a diamond shape of radiation shot through me. The dose they are giving of TBI is the most radiation given in any treatment of anything and is a very small percentage of the radiation done here, around 1percent. So far the reactions have been uncontrolled nausea which as of today has been a wee bit more manageable and I even put down a fair amount of Mcdonalds! ( I know sounds gross but if you haven’t had food or water in 2 plus days, youd be stoked too)! During the doses you stand in the cage and don’t feel any pain but at different times will be overcome with nausea and or complete fatigue which means you can fall etc. something about standing for 40 minutes in front of a machine which will do enough damage to cause literally months in bed and be a part of a 30 year shaving of life expectancy seems to really take effect.
But I have to say with all of this I have really been so happy. I mean I know what is coming next week, the largest dose of chemo ever, and a transplant will with this become the most treacherous thing I will ever encounter, but I feel so blessed I spend less time scared than I do smiling at my wife and wonderful health care team. Granted the nausea and ups and downs can take it out of me but I have found beautiful moments of clarity between the dry heaves and find such joy in knowing that I have such a loving and nurturning wife by my side. Interestingly enough when I took my ring off for the first dose, I did not get the soap all the way off in a section around my finger. Well turns out really anything on your skin does react, so I have a permanent skin spot I guess which feels like my ring is always on, its nice in some ways because I cant wear it, but have to remember to scrub EVERYTHING!
Also I wanted to express my thanks for all of the outpouring of support for the wedding, the move, stem cells, the cancer fight, and just the love shared daily. I have said it so much before but will reiterate the truth in the fact that the love IS what this about and the thoughts, messages and visits do make the days where anything sounds like a better option just that more do able. Thank you always and know of my hearts deepest gratitude, and also of that of my lovely Annas’ gratitude for the wonderful support even though so many do not even know her well. I pray we may be as graceful-

DAY 1

Day 1  (6.14.2010)

Well today we checked into the hospital for the beginning of this new adventure. We awoke early and exhausted from a packed last weekend in Fresno which was a great escape from san fran and everything there. We hung out with our friends, got some things in order and had our last little trip before all of this begins. We swam, I learned to ride a dirt bike (something I have never done) and I think I have found a new found love…don’t tell my parents.  We just played and spent time with good people, went to church and were able to give a little thanks for the incredible things everyone has been doing for us that no verbal thanks can ever do justice for. Thanks to you all again and to everyone that is praying, thinking, supporting, just being there. Thank you! we drove back on Sunday night and talked a lot about what would be happening the next day. We both slept well and arose early, packed and headed to clinic for an appointment. They wanted to make sure everything was good to go and well it was. Chad was full of energy like he usually is, we met  an amazing woman that is post transplant, she was beaming with life, head covered in a hat and dark skin in many places she was one of the most beautiful woman I have ever seen. She talked to us about the beauty of going through this and the strength she and her husband have found in it. Yet another angel sent from god. We talked and laughed and she spoke of how she was inspired by chads positive attitude, she had seen him in the hospital right after his relapse while she was inpatient after transplant. She reassured me like I already know that I married a great man. We finished that appointment and headed to admission, gotta love paper work and overfilled waiting areas, then we headed to radiation where chad was tattooed with purple sharpie marker, unfortanely not the real one he would have liked to get, but he now has his lungs outlined on his chest. It looks like you could play operation. Chad can describe what that experience was like, I was sitting in the waiting room reading the little prince in german and watching all the people come in and out that for one reason or another are being radiated in there brain, throat, or leg. After that, chad was well still bouncing off the walls with more excitement and energy than any other person. It was funny the radiologist came to get me from the waiting room and said, are you mrs. Hickey. With a huge smile. I said yes and she said I hope you know your husband is a sweetheart. She was all smiles and looked like she had just had the funnest time ever. She laughed as she walked away and turned around and continued to complement chad on how happy and positive he was. It made me smile. After radiation we went and checked into our room. That sounds like we checked into some sweet, well it has a bed, mini fridge, shower, toilet and foldout chair bed. Sound pretty suitish to me and it has a great view of san fran so you cant complain too much. i ran down to get bags and when I came up couldn’t find chad until I heard him and a group of nurses laughing hysterically in the hall way. We laughed and caught up with all of them from all of our lives the last few weeks. Then we went to get his port in (a surgically placed iv in the right side of his chest that can be left in for months at a time. ) works great for transplant so you don’t have to be stuck so many times which chad is looking forward too. HE HATES NEEDLES! So he went in, I tried to write to catch up on the past month or so, so you all can be filled in, it will be done shortly.  You know marriage, engagement, pre treatment, past hospital visits, ambulance rides on our honeymoon…lots of fun stuff. It is all to come. But anyway chad went in, full of energy and came out high as a kite with a 3 pronged port sticking out of his chest. He was high for a bit until he hit his bed and was out for hours, when he awoke he was nauseous and in pain from his port, and headaches from the pain meds. He tried to eat which he was looking forward too since well seven oclock am when he had to stop eating but found soon after that it didn’t want to stay in his stomach. Gotta love cancer and everything that comes along. Day 1 and throwing up already. Poor guy. So pumped with zofran and Tylenol chad is sleeping again, he is a trooper. I love him so much. 

31 BLOCKS DOWN

So we finally found a place to live. So I never realized how much I appreciated being able to move home to my parents house between semesters or how much I loved the simplicy of student housing at BYU. I was woken up quite quickly to reality and my gratitude of the fact that on a mission there was always an apartment waiting to be moved into. Well I was hit quite hard in the face as my craiglist master husband and I searched and searched the city of san fransisco trying to find a place to live. Apparently two unemployed people that haven’t had a job in a few years don’t look too hot on paper. We prayed and prayed about it, called on everything we could find, visited open houses with floods of people waiting at the door. It was quite the situation but like God always does he sent us an angel to make everything okay. Chad had posted a link on craiglist stating that we were looking for a place to live and after we were both ready to live in a van down by the river we received an email from a woman that told us we could come and look at what she had to offer. Chad was in the hospital and so I headed over alone to take a look at the place. The woman answered the door and showed me around, told me about the place she was renting out for the exact amount we were looking for, showed me a beautiful part of her house,

She asked me to tell her about me and as I told her what was going on and about transplant and chad and about me and him and everything, I felt like I just poured out my heart, she told me about her, about her close friends that she had helped care for as they went through chemo  and her dear friend that is awaiting a transplant and her good friend that is a transplant survivor. I told her I need to talk it over with chad, but that I would call her that night. As I left she hugged me, gave me her phone number, with a promise attached that if I needed anything I could call her and that in the meantime I was more than welcome to spend the night so I didn’t have to sleep in the hospital. I left in pure awe at the hand of the Lord I am so grateful for. Chad and I had had many conversations prior about how we were just waiting for the right thing to come and well just like the Lord always does, it came, like it always does after more waiting and working than any of us like to do, but he kept his promise and he made it work and not only that, he didn’t just give us a cardboard box but a home  with an amazing landlord, furnished, beautiful view, everything we needed. God sent us another  angel, this time she was thirty three blocks down.

(video posted in videos..enjoy...oh yeah i got my hair cut too...oops)