touching...

John and I have never been shy about how much we love each other. Since we knew we wanted to spend the rest of our lives together, it has never been a secret…especially not to each other. We are not the over  the top couple who cannot keep their hands off each other in public, but we do steal kisses, hold hands, and constantly take a moment to touch no matter where we were. I would have my arm under his or run my hand on his back and rub his bald head…he would always have his hand on my leg driving around town or brush his hand on my arm…all this to say “I love you” without saying anything at all. The touch I will miss the most is his hand on my face. He would grab my cheeks to kiss me or when I cry he put one hand on the side of my face to comfort me. His rough, large, shaky hands on my face would always make the world go away and make everything well again…if only for that minute. Now, as we sit here and cry several times a day, I grab his hand and put it on the side of my cheek for him. Weaker and sobbing himself, his still shaking hands on my face are now thinner but still full of so much love. To help him with my touch, there are constant foot rubs, back rubs, embraces, head rubs…anything and everything to keep my energy on him. Just saying I love you is not enough…showing him and comforting him with my love is just as significant. We usually fall asleep holding hands…again, all trying to fill him full of my energy. The power of a person’s touch is an amazing thing…many do not realize how much sweet energy they can give someone just from a simple touch.

Something else very touching to our family is the outpouring of love from this blog. Getting random messages from those we have never met is extraordinary. Those who take the time to write encouraging words, love, prayers, mention us on their own blogs, become followers of our blog, and who just plain read about our story are all incredibly thoughtful. Thank you too. I always thank our family and friends and I must thank you as well. You know who you are…I do not know you either, but thank you for taking the time to read and follow. It means more than you know. Here is the beautiful man we are all fighting for…family, friends, and strangers alike.

week three...

Yesterday marked our third week in Indiana. It has flown by and the change in John’s appearance is so much more evident since our arrival. Through these three weeks it has become harder and harder to build his appetite and to keep things from seemingly “going wrong.” John said those two words yesterday after an incredibly hard weekend. “Why is everything going wrong on top of what we are dealing with?” he sobbed. I wish I had some sort of answer for him and it hurts to know he is feeling this with this avalanche of disparity wanting to devour him in these final moments. 

The weekend was not what we expected. We were hoping for a relaxing, problem free few days and instead, his side started giving him issues. We noticed the slow ooze coming out of an old incision on Friday night in the form of a dark, yellow pus. Sorry…a little graphic…I know. Later that night, John shakes me awake and turns on the lamp next to our bed. He had bled through the bandage we put on hours before…through his shirt…through the sheets to the down comforter underneath. He looked shocked…and so was I. There was blood everywhere. I kept asking him if he was in any pain and he kept assuring me he was not, but the area to the touch was a completely different story…it was painful. We quickly took the bandages off to see what was happening to the incision site that originally started as a pin hole. It had expanded further through the slit that was originally scabbed over and was now like a leaky faucet. It did not stop flowing no matter how many gauze pads I stacked and taped on top of it. Every hour on the hour, he would bleed through and we would be awake to strip another set of sheets and try to somehow slow down the continuous flow. It was such a long, agonizing night…finally morning came and we called Robyn, our hospice nurse, to come quickly to the house. She taught me how to bandage it tightly and brought different supplies (thicker, more durable pads) to keep it from leaking every hour. I asked her where the fluid was from and she said it could be any number of things, but we have to continue to let the “bad stuff” come out. It is completely understandable…there would be no reason to stitch him up because his body just wants to push it out… stitching it could cause it to want to come from somewhere else, in turn, causing him more pain.

With all this…John still wanted to make the effort to get out of the house. Getting out of the house is his favorite thing in the world. He pushes himself to get on his feet, get dressed, and move. He wants to move. I cry every time he tells me he wants to do things on his own because I know he does not want to lose that part of himself. This is becoming less and less….and I cannot tell you how difficult it is to realize. One giant step John took this weekend was going out to dinner with friends. He wanted so badly to have a night with friends to eat, laugh, and again, get out of the house. He was there…but I know he was not completely comfortable. The ringing in his ears was louder than ever, the weight loss has caused sitting for any amount of time to be excruciating, and he is slowly losing his voice which made the conversations in the loud restaurant harder than normal. Here we are...with his sister Megan and her husband Chad.

Sunday came and both of us were completely exhausted and we had to keep a close eye on his dressing. On top of this, we continued to drain…and on top of that, John’s feet were swollen and needed to be elevated. Monday at the doctor proved that his counts were at 8.8 and the doctor ordered a transfusion for later that afternoon. We were there over 6 hours and were craving to leave the hospital quickly…it just felt longer than expected. 

Can he have a break now? I am pretty sure he has enough to deal with and has enough on his plate than having to now deal with this. He realizes all these things are happening because his mind is still very much here….and he cannot seem to control the downward spiral his body is taking him on. He loathes what is happening…as do I. His sweet spirit is taking a beating yet he continues to press on. If anything, he is not going to stop fighting until the very last second…and with that, we all continue to rally around him to do the same.

patches of love....

A little gift from Florida came in the mail today....

It was perfectly stitched together with photos of our life together, Dallas Cowboys patches, and little comments of encouragement and love all over the back. What a great way to go into the weekend. I also heard from a good friend of mine today stating there was another gift headed our way from our Chicago, Tampa/Brandon, and Minnesota friends. I am beyond speechless and thankful. How can I put into words how appreciative I am in this moment to every single one of you. All of this to support our journey and all without batting an eye. Thank you friends....thank you for being so amazing.

make it easier...

It is unbelievable…how can this ever be easy? What hand did we get dealt in life that makes this okay? We said forever….and that is what I want. I want him forever. I want us to last forever…or until I would go first at a very old age. I am sitting by…helpless…watching this happen. I want time to come to a slow crawl. I want each hour to seem like an eternity and I want his smell to linger in my nose every second of the day. I am being self-seeking…I know. I hate that I feel this way but selfishly, I want him to be here. I know there will come a time when he has to go…but the last thing I want to think about is that time. It is hard not to…but I try. I am trying to compose myself…to stay strong…to laugh…to allow myself to break down and feel…to listen to music…to realize this is happening without it consuming me…to feel my heart breaking. My heart is breaking. Make it stop…make it all easier. My sweet love. My angel. My life. He is my life.

continue...

It has been a few days…and the blog has taken a back seat. I want to always update, write, vent, let go…but there are other things that have occupied my time and my mind this weekend…understandably so. We have had constant visitors from family and friends here in Indiana and a few from out of town. It was good to have everyone gathered in support of what John is going through right now.

John has changed a lot since arriving in Indiana two weeks ago. He is continuing to lose weight even though we try to stay on top of his eating habits. He is not as hungry as he used to be. The oncologist here prescribed steroids last week and slowly we are seeing his appetite rise…slightly. I am constantly asking him if he wants toast, jello, ice cream…anything to balance the array of medicines he has to put in his body to keep him comfortable. Though he does not always feel nauseous, he throws up often. It has been a chore for him to keep nutrition down no matter how many times we take nausea medicine. John has always had shaky hands and now it is more evident. Anything he picks up is hard to handle and usually falls from his grasp. The evident frustration with himself is hard to watch. He finds himself dazing in and out of consciousness/daydreaming thinking it is real life and starts to talk about them like it just happened. Bringing him back to reality is difficult because he then realizes what he just discussed is not really happening…and he becomes disheartened. It is hard on him. It is hard on us to watch. He feels like he is losing his memory and short term occurrences and to him, some never happened. His moans and twitches in his slumber are becoming more frequent and he speaks often of his family and friends in his discussions as he sleeps. He points, runs, talks, laughs, sighs, cries out, sweats and shakes all in his sleep. This process is exhausting for him because he usually wakes himself up when he jerks too hard and hurts his left side. I feel every movement he makes and hear every sound he cries every night and am right there with him…to comfort him when he wakes feeling hurt or sick to his stomach after an awakening jolt. We are both tired.

He has always said “thank you” throughout this journey…and lately, it is more often. I continually thank him in return. He has fought so hard and his body seems to want to give out on him but his heart and mind do not. Today was difficult…John spit out blood. This is the first time this has ever happened. I realized it when I looked in his spit cup that sits next to him on the night stand. I turned to him and asked, “Baby…is this blood?” He looked at me and said, “I think so…it has been red like that all day.” It sent chills down my spine. Since the start of chemo, John has always had a large mucus build up in his lungs and it increasingly became worse with the fluid drainage followed by the expansion of his lungs. Never has it been deep red like this and never was it blood. Even with this…all the draining…all the blood loss…his hemoglobin is still holding at 10.1. This morning we went to see if he needed a transfusion and found out he did not. It is dipping slowly, but definitely not as fast (every other day was a transfusion) as it was in the hospital just two short weeks ago.

The dark cloud is looming. My thoughts are all over the place. Some days I feel as though I can conquer the world and be a strong wife to my ailing husband and others, I feel like crawling in a hole and screaming my head off. What dream am I in? More like…what nightmare? There is the never ending thoughts of what things will look like when he is gone…what the following weeks will look like as we continue to fight…or how can I just save him from all this and celebrate some sort of miracle. I am praying I do not lose him before he is gone…I keep telling him not to forget me or my voice when his mind starts to slip further away from me whether if it is from the cocktail of medicines or the cancer taking over. My heart breaks as I look into his eyes and see his hurt and knowledge of leaving. His love is as big as his beautiful spirit and I know he is trying…I know there are so many with us still trying. All of us have our hands on John and we are lifting him up. It makes me sick to actually feel my heart breaking a little each day as I miss him so much already. We are weary and battered my friends…thank you for your continued support and prayers. We continue to fight even though there are no more medical options for John…we just continue.

an unexpected surprise...

Emily Anderson...the beautiful soul who took our "after wedding/engagement" photos one month before John was diagnosed sent me something even more wonderful last night...it brought us to tears. I wanted to share it with all of you today...enjoy.

Make an on-line slideshow at www.OneTrueMedia.com

Also...please feel free to join/help/read about her and her wonderfully giving family in their journey of adopting a little girl on their blog. Much love wonderful family and friends.

good morning...

I am feeling so much this morning…so much. I am almost overwhelmed. I am thinking about our family and friends this morning. How did we get so lucky? We are the two most fortunate people in the world right now. Everyone we know and love has been so selfless throughout this entire journey and I could not be more grateful. I am feeling emotional right now. Thank you all for loving us and helping in our fight…emotionally, spiritually, monetarily, I could go on and on…all without batting an eye. Because of ALL of you, I have been able to focus all my energy on the person who needs it most in this season…John. So as I sit here, cup of steaming coffee on one side of me, John and our puppy sleeping on the other…I am beyond thankful.

diary...

I realized this is my diary. I never really kept a diary when I was young…not even a journal. I would always start one, keep it for a few weeks and put it down to never write in it again. Anything that I did write would be forgotten or would remain a distant memory. I wish I would have started a blog about my life…from the beginning…to look back on every day with fond and loving recollections….especially the life I shared with John. What this man has brought to me is nothing short of amazing seconds, minutes, hours and days. Since meeting one Thanksgiving almost seven years ago, he has been in my heart every day since then. No matter when the thoughts started coming through my fingers into words, the years prior I filed in my mind. I am glad I started this blog….I am glad we have amazing people to read along with us….I am even more humbled by those who have been touched in some way…but more than anything, I am beyond happy that John is a part of my life. I will never say “was” no matter when I speak my profound happiness with him or of him. To me, it will always be “is” because I know he will never leave…any of us really. When you have a spirit like his, those “-isms”, smiles, jokes, thoughtful sayings and sweet baby blues…they are all carried on…just like many others we have all loved in the past, but to me…this will be different. He is my one true love…my soul mate…my sweet angel.

He lies here next to me…having a hard time sleeping too. His noises, movements, night sweats, dreams and coughing all keep him from really delivering his body the sleep it needs at night. He finds himself sleeping most of the day and barely keeping his eyes open. Sleep is a large part and a majority of his life now. When he is awake for brief moments, he says hi to visitors or plays a quick game but then drifts back out. Many times, we continue to stand or sit around him…talking about the amazing man lying before us, as he drifts in and out of his own consciousness. It is amazing how his mind keeps fighting and his loving voice staggers into conversations midstream. His body is weaker and his breath is wheezy…it is hard to listen to because he never smoked a day in his life and was an active twenty seven year old man. I know this will never be easy…ever. There is nothing easy about what he has gone through these past eight months either. I will see him again…I know I will, but for now…I keep these thoughts flowing and keep loving this perfect creature.

My thoughts are all over the place…can you feel it? I am just writing…anything that comes to mind, I just wanted to let out. Thank you everyone…it feels good to know we have so much love, prayers and support flooding our way….keep them coming my dear friends…we continue to fight with that, no matter what the suggested outcome.

fatigue...

I am not sleeping…period. I cannot seem to find my mind, control it long enough, and go to sleep without having to think about all the things happening in this moment. I am constantly making sure John is okay and every little movement he makes…I am awake. His convulsions and active dreams are becoming more and more frequent and longer throughout the night. It is hard to say at this point whether it is the mix of medications he is taking or cancer continuing to conquer his beaten body. This is something we are going to discuss with his nurses and doctors here first thing tomorrow morning. There is no reason he should have to feel anything but euphoric these final steps of his journey and I know his care takers will make sure of this….as it is a trial and error process with any medications one takes.

So, the short of it is…I am worn down. BUT…so is he and he rages on in his fight…and so will I. We are very fortunate to have so many who love our bubble we have formed around us and who will protect us whole heartedly. There are those same people who love us individually as well. They know what each one of us need in a given moment and who hold our hands through times when we need to talk and cry. I have many of these people in my corner…and I know many others in John’s.  We have had many visitors every day in this home and we are so thankful for every one of them. My brother and sister in law were here this weekend and even more love was stuffed into this house if you can imagine that. It feels good to have my family around with John’s…my mom and my dad included…it feels good to know all of these people adore John just as much as I do and who are also here for me too. Love, prayers, laughter and why not, a little more love. We feel it all.

This week we will continue to check his hemoglobin which has held strong since we left Florida and make sure his comfort is at the forefront of our daily concerns. Cancer is taking a toll on John just as it would anyone with the amount he has to endure. His appetite is not as high and his nausea is a continuous battle…have I mentioned the draining? He has several more swollen lymph nodes popping up on his body and each one is the reminder of what he is experiencing. We know what is happening but it does not make it any easier to see it take a charge on the love of your life. It is hard to stand by and watch with helpless eyes….I love him…more than anything in this world, I love him.

my heart...

There is not a countdown here…we have to enjoy the time we have left with him. If there was an expiration date, it would take away from the fact that he is still here. There is always going to be the natural wonder of when, how, and what it will look like…but why is no longer a part of the questions I ask. I know where I will be too…that is definitely a given. If the consumption of the previous when, how and what were entertained in the least bit, John’s spirit would be robbed of its giving energy and he deserves more than that from me…from his wife. How much longer do we have with John? I do not know…nor do I care. I will make every minute of every day seem like an eternity in my thoughts and he will never leave me….he will never be a brief thought in the daily grind when I get back to what will seem to be a life after him…he will forever be etched in my heart and on my mind. He deserves this from me. There will always be a familiarity of his smell, of his touch, of his voice, of his face, of his love…running rampant inside of my soul. He still, to this day, thanks me for taking care of him…I have always replied back in greater thanks. “Thank you for taking care of my heart,” I say every time. Just because he cannot do the physical things he would do in the past that he considered taking care of his little family, he has always and has continued to take care of my heart….and he has done an incredible job of doing so.

our second home...

It has taken me a while to write this post. I started it on the plane ride to Indianapolis and have been working on it every night since then. As you can see….we have made it home. Indiana will always have a sense of home to the two of us. This is where he grew up, where his entire family resides, where my parents moved to when I went off to college and where we met. We agreed since the day he was diagnosed that we would end up here if there were no other options in his treatment…and here we are, resting in the Kennemore household. We were welcomed with open arms by his sister, Megan, and her husband, Chad, to stay as long as we needed and to make their home our home. For this, we will forever be grateful. There is a tremendous sense of comfort being here…in this home…with our family.

Leaving Florida was impossible to say the least. Since John’s release from the hospital late Friday night, we said our goodbyes to our friends in Florida the entire weekend. It was a revolving door of friends, food, love, family, strength, tears and laughter. Laughter is something we needed most that weekend because the realization that many might not see him again was too hard to bare. Hour after hour was met with a trip up the stairs to go see John in bed, say their few words and moments later, the descent back down the stairs to meet others also in shambles. One by one, every person got their moment with John. We never could have imagined how difficult this weekend could have been….and we are about to do it again in Indiana. With each visit, we realized the trip was getting closer and the moments with friends in Florida were drawing to a close. It was like a ripple effect. I have never heard so many, “I am so sorry” avowals whispered in my ear as I did this weekend. The harsh reality of his weakening was becoming more and more evident. The fleeting thoughts of flight and transport in the moment were consumed with what was to happen in the coming days.

Monday morning came in a hurry…we stepped onto the plane and John was incredibly strong throughout the ride. We thankfully arrived to family and friends with the same open arms we left in our home in Florida. Since our arrival, we have been draining the bloody fluid from his chest every day and without fail, there is more and its consistency is even thicker. We had a scheduled blood transfusion Tuesday morning and found out his hemoglobin was holding strong. All of this despite the amount of fluid we are getting from his body. It fared well. Hospice was also waiting for us to arrive and pain management is an important part of this leg of the journey.

He has been under the stress of knowing what is happening and faithfully, he does not waiver. His head is held as high as he can in a moment like this and his love still permeates the room. I do not know how he does it. I really do not know how he can know how the chips are falling and yet, he tries so hard to be the best companion he can be. I have thanked him for fighting and for being the bravest person I have ever met every chance I get….and I will do the same unto you. I have always said it and I will say it again…thank you. Thank you to those who have supported us throughout this journey. The selflessness and love shown by all of you has been amazing and we honestly could not have done it without all of you. Even just reading this shows a great deal of care even though many have no idea who we are…that is a gift. It takes a village….and with his caring sister and loving mother in tow….we arrived in Indianapolis with the utmost power and fight we can unearth within ourselves. It is not over. He is still here. He is still who we all want to save right now. Though we can try and pretend it does not hurt. We can pretend it is not happening. We can say how much we all just want this to stop and go away. We can yell and scream with tears flooding our eyes. We can do all of these things, but the reality of it is….this is what we are going through. Though rough and completely overwhelming, we still have each other for these moments along with the power of our family and friends backing us every step of the way.

our song...

Sail away with me honey
I put my heart in your hands
Sail away with me honey now, now, now
Sail away with me
What will be will be
I wanna hold you now

Crazy skies all wild above me now
Winter howling at my face
And everything I held so dear
Disappeared without a trace
Oh all the times I've tasted love
Never knew quite what I had
Little Darling if you hear me now
Never needed you so bad
Spinning round inside my head

Sail away with me honey
I put my heart in your hands
Sail away with me honey now, now, now
Sail away with me
What will be will be
I wanna hold you now

I've been talking drunken gibberish
Falling in and out of bars
Trying to get some explanation here
For the way some people are
How did it ever come so far

Sail away with me honey
I put my heart in your hands
Sail away with me honey now, now, now
Sail away with me
What will be will be
I wanna hold you now
Sail away with me honey
I put my heart in your hands
Sail away with me honey now, now, now
Sail away with me
What will be will be
I wanna hold you now