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

dear John...

Hi baby. I love you….I know you know how much I love you because I tell you at least 100 times a day. Do you really know how much other people love you? I don’t think you do my sweet angel. It is evident in the outpouring of love, affectionate words, and compassionate action from everyone who has ever come in contact with you, even if it were for a brief second. I know you want to thank so many for what they have done and are doing for you in this time. You are adored by so many and an inspiration to everyone…especially to me, your wife.

When we got the news seven months ago I knew every ounce of our beings, together, were going to fight. I repeated those words to you as we sat on the living room floor…in tears…the day you told me the results…we are going to fight. Fight is exactly what you did. You knew how hard this was going to be….you knew it was going to try and break your spirit….you knew cancer was going to try and take you away from me, your family, your friends, and your life too early and you were not going to let that happen were you? You did it. You fought…you loved….you cried…you felt….everything. Every single thing that happened along the way you were in control of…except the cancer. That beast was relentless baby. It wanted to take over you sooner but again, you did not let it. You made it so much further than the expiration date you were given in the beginning and I am so proud of you. I am so amazingly proud of you and to have been through every part of it with you….right next to you. There was not a moment I felt as if I should be somewhere else. I knew this journey was going to be hard but your bravery, strength and love was all I needed to be right there with you.

I hate cancer baby love. I know you do too....and I know you hate it most of all because it cut our lives together short. Six years was not enough time to soak you in….I want more. How can I not? The light that radiates through you to me is intoxicating. You are a man of few sentences and you are never careless with your words, but when you do speak it seems so profound…even hilarious at times. Cancer also took our future together….especially having our own little ones to pour our immense love on one day. Even though we cannot have those beautiful, blonde haired, blue eyed little angels anymore…I will always have them in my heart….along with you. You are nowhere near being gone, so this is not a letter of goodbye…this is a letter of appreciation and love. We begin this new journey now together to spend every second we can showing our love to one another. I am so lucky I found you….I am so lucky to have loved and will always love you….I am so lucky you wanted to spend the rest of your life with a woman like me. Don’t worry….this is just the first of many letters I will write you as there is so much more to say to your beautiful face for the remainder of your time here with me. I adore you….I just simply adore every ounce of you. Thank you for loving me….

Your Wife

my angel...

My sweet, amazing angel. What can I do or say to make this all better? There is nothing left…and it hurts. Everyone who has ever met John will say the same thing, “I wish I could take this away.” I do too. Since the last blog entry, we got the news we never wanted to hear. Let me walk you through the past few days.

Friday evening, John’s mom arrived in town and was put into this whirlwind with us. She is really a strong and amazing mother and I am thankful for her presence this week. She walked right into the mess by getting taken in the hospital hallway by the surgeon who put his larger chest tube in place. He took it upon himself to tell her…rather than the 27 year old man who has been going through all this for the past seven months…that things are a lot worse than they seem and we were not being told the entire truth about his diagnosis and life expectancy. With those few words, he stole the optimism and positivity we had been fighting so hard to keep through this full journey. Saturday and Sunday were spent in a fog with the anxiety of wanting to discuss his options with his oncologist. Soon came Monday and we hurriedly called him to ask of his schedule the following days. He let us know he was to arrive first thing Tuesday morning to look over his chart and discuss treatment options. All the while, John had been draining more, darker, bloodier fluid on top of countless transfusions and xrays to continue tracking his drainage and hemoglobin. Monday did seem to get better and the previously higher blood pressure John was battling, was decreasing hour by hour.

Finally, this morning came. We were woken up by the portable xray team, coming in to do their morning routine of John’s chest and stomach. As I was stumbling in the hallway, still half asleep, I realized….it was Tuesday. Tuesday was the morning we had been waiting for since the dreadful news on Friday. My hair disheveled and my eyes full of morning crust, I made my way back into the hospital room we have now called home for over a week. I plopped down on the couch and could not help but look at my feet and then over to the drainage kit lying beside John’s bed on the floor. I had noticed he was on his fourth kit, each one holding over 2,000 CC’s. The uneasiness and nervousness I felt in that moment was unbearable. Susie walked in the door around 8 that morning, handed me the ritual cup of coffee she stopped to get the two of us and sat down next to me. This wait for the oncologist took me back to the wait we experienced the very first time we sat in the cancer center waiting to hear the results of the first set of scans when John was originally diagnosed. I looked down, realized I was still in my sleeping clothes and proceeded to the bathroom to change into jeans. Just then…I heard the door open. I could not get my pants up fast enough and rushed out the door to find John’s oncologist sitting on the couch. Before I tell you what he said…I want everyone to know, we have been incredibly lucky to have the support of our family and friends, but equally, our amazing doctors and nurses. If we did not have the support and fight our doctors had along the way, we would not have been so optimistic. I sat right next to the oncologist and he began to talk to the room. In this small, cold hospital room sat John, Susie, the Nurse Practitioner from the surgical team and me…all hanging on what he had to say next…“John, treatment is just not an option anymore.” As the words rang through my ears like an ambulance siren, I got up and walked to John’s bedside to hold his hand. The doctor continued to talk about the amount of tumors in his chest, the progression, the quality of life he wanted for John for the remainder of time, how chemotherapy was too much for his low hemoglobin, and how the fluid was coming out pure blood and was preventing further treatment. He was getting transfusions every other day but it was literally coming out the other end of his chest the same way it went in. With those statements, it was like someone ripped my heart out of my chest and stomped on it. It continued when he said, “The tumors were responding but finally outsmarted the treatment and is back with a vengeance.” I squeezed John’s hand and watched him slowly break down. He hung his head and could not believe the news either. We always kept hope that one day he would beat this and now we were told there was no way. It was like a tidal wave…the entire room felt it and we all were sobbing uncontrollably. Hospice was mentioned…pain management…at home care…making John comfortable…and finally, sending him away for yet another surgery this week to put back the at home drainage tube in his chest so we can take him out of the hospital.

Susie and I followed the hospital bed as he was carted down to another floor for this surgery with a new surgeon. We requested a new one after the incident on Friday. It was over in less than an hour and we were met at the door by the surgeon as John was whisked back by on his way to his room. “Everything went as planned and I found another pocket of fluid the previous drain did not access,” he said. The thoughtfulness in his eyes and the way he held my arm showed me how much he really cared for his young patient. I asked if he retrieved a lot from his chest…even with all the draining John had done throughout the week. “Yes,” he nodded, “…a lot more actually.” Where and how was John carrying all this? It boggles my mind. We hurried up the elevators and met John in the room, where he was still coming out of anesthesia. He opened his eyes, saw his mom and me standing before him, and smiled. My angel smiled…then said the funniest thing I have ever heard. “Baby, I dreamed about giant green beans…they were the size of my arm.” We giggled together and it seemed to make every ounce of sadness vanish for a few moments.

After hours of recovery and coming out of the medicines they gave him from surgery….here we are…a mess. We are a freaking mess. These past seven months have been such an uphill battle with the hope of beating this horrendous leach growing inside of him. Our gastro doctor said it best weeks before, “We all want John to prove us wrong. We want him to make us all look like jackasses and beat this thing.” More than anything, we wanted and believed this too. He was going to be that rare case that won…the one who made it in the medical and record books as being the youngest case ever diagnosed with esophageal cancer and on top of all that, beating the bleak prognosis and living years beyond what anyone expected. We wanted this so bad. Today, we realized this was not going to happen. We have all fallen apart several times today and I am sure, as word spread of the results, others did too as if they were right next to us. I cannot blame anyone for feeling this pain because of the love you have for John. I am so lucky and thankful to have this man in my life and I know you all feel the same. We do not know how much time we have left with him, but I am going to be sure to spend every last second I can letting him know how much I love him. So…with that….we are headed back to Indianapolis on Monday after getting things together here in Orlando this week. His beautiful sister will be here on Friday and all four of us (John, myself, Susie and Meg) will fly all together to stay at her house as the cancer continues to run its course. I never thought I would say that…let the cancer run its course. I find myself looking down at my wedding rings, starring at John, or looking at the floor and completely zoning out. I think of all the beautiful memories we have shared and the amazing love we have for each other. It is like I am not even in my own body anymore. Today, a social worker came in the room to check on us and one of the last questions she asked was if we had kids. I told her no….but that we always wanted children. I sobbed and realized this would never happen with John and could not control my tears. One of the many things I wanted to have with this beautiful person is now gone….and I cannot stand it. My world is in shambles and the one person to make it all better, every single time…is leaving. We do have the most amazing support system…we really do…I know that….but selfishly, I only want one person here with me, and that is John. A part of me does not even think this is happening right now. I'm sorry...I know my thoughts are all over the place right now. Please…I beg of all of you…please, send your sweet love, prayers, thoughts, and compassionate words to my husband. This is what we need and this is what I ask of all of you. I just love him so much…

older posts...

I don’t normally look back at my older blog posts because the past is the past…but I did today. I went back in time to see what it was like before cancer became a part of our lives. I naively wrote about the miniscule events happening in our lives like the house hunt, my MBA, John’s promotion, and our expectations of children to follow. It was a time where we talked about what our children would look like (always with his beautiful blue eyes), what our house would look like and what retirement would eventually be like. It is crazy how things have completely turned around. I read the “Busy does not even begin to describe it” entry and chuckled to myself. It is funny how I thought I was busy or even remotely stressed then. What was I thinking? No problem is worse than another…I am not trying to say we have it the hardest in life by any means. Though this has been the hardest thing I, myself, and John have ever gone through…there is always that possibility that it could be worse. Not sure how, but it could be. What is really eye opening is the fact that many have to go through hard times to really appreciate what they have in front of them. This fight…this cancer…this ridiculous rollercoaster…this “bitch inside” my husband…this toxic crap…was not needed for me to know or realize the amazing being lying before me. I have always known what person I had as my life partner and how to value him every single day. Now, because of all this, it is all magnified. How many times can I say it? I adore him. He is fighting for his life….and there is not a second that goes by that I do not wish it were me rather than him. He is such a sweet, selfless soul…fighting for a future we used to talk about so haphazardly without regret but with love.

whirlwind...

Anger is a scary emotion. When something frightens you to your core, anger can surface and you are left to deal with the absolute feeling of helplessness. This is where I was these past few days…helpless. Anger was a part of my emotion, yes, but never consuming. If I let something like this take over my being…then cancer won. Scared? Yes…terrified might be a better way to explain my core. Hurting…yes…my heart is broken. Helpless…yes, because I cannot do anything medically to help him. Physically and emotionally I am there for John but what else can I do to take his pain and illness away? Hurting…yes, because he is the one on this journey though not alone, the only one who can bare the physical burden of this cancer. All of these things seem controlled when I am with him….I feel strength shine through. I feel a sense of optimism that all of this is really just a bump in the road.

The bump started on Tuesday afternoon. I went to work that morning because John pushed me to leave the hospital to get out for a little while. I came back in the afternoon to find John, still in his hospital bed, but with his eyes welling up with sadness. I went to his side and asked, “What’s wrong sweet angel?” He began to tell me of the morning parade of doctors who came into see him and of course, all the news he received from his primary oncologist and lung doctor. “We are getting transported to another hospital for surgery,” he said. I think we always knew this surgery would come, but we did not realize the whirlwind that was about to transcend upon us in the following days. We sat there and discussed what this surgery might look like before and after…he has had the larger drain in him before, but has never had the powder substance blasted into his chest cavity. This option was discussed when we first learned of the fluid months ago, but the lung doctor stated it might not do John’s particular case any good….I guess it was worth a shot now and had to be done to control the pain caused from the fluid buildup and draining. The sticky powder was going to help his lungs stay attached to his chest wall and hopefully, clog the sources of bleeding/fluid. John and I sat there and talked further about his next options. John said the oncologist told him he was already on the strongest form of chemotherapy available and we could give the lower form a chance, but it was mainly up to us to decide what to do next.

As we sat there consoling each other, the transport team came to the door, scooped John up and left. I followed closely behind in our car having to navigate on this extremely large hospital’s campus. I wandered in the building with our bags in tow and was pointed in the right direction by hospital staff. It seems like I walked for miles until I finally found him, calmly sitting on his hospital bed, staring at the door…waiting for my arrival. I crawled in bed with him (which is a surprise when it comes to hospital beds because they are usually very small, but luckily this one was a little wider than most) and we held hands until we both fell asleep. Even though we were woken up every thirty minutes by staff or John’s continuous back pain, it was one of the best nights of my life. It had been a long time since John and I were able to sleep so close to each other. Though I stay every night with him in the hospital, the amount of machinery or the size of the bed prevents me from being next to him. This night was different and so calming. We needed this night for our tattered spirits because the very next morning was the surgery. The night quickly came and went, and there we were…prepped and in the surgical waiting area before John was to be taken back. I held his hand and all we could do is stare at each other. We mouthed “I love you” countless times and tried to make each other laugh in this intense moment. Finally, they kicked me out for him to be taken back. I kissed him several times, made the nurses promise to take good care of my sweet husband, and walked back to the waiting room. Each step still echoes in my mind…it was such a disheartening undertaking to walk away from him that morning. I luckily had my best friend Michelle with me to make the time go by faster and to talk about everything but what was occurring in the next room. A few hours later, he was done and they led me back to the ICU (Intensive Care Unit). As I was being escorted back, the woman handed me a card with phone numbers and told me to turn it over to notice the visiting hours on the back. There were four, thirty minute times visitors could go into the ICU. That was it. My heart sank even though I understood the purpose of having strict rules for visitors…I did not want those regulations to apply to me. I walked down a narrow hallway and finally walked into a private room to find John lying there, completely out of it. He was half asleep, waking up from the anesthesia and hooked up to more wires and tubes than I could count. It was, to say the least, completely overwhelming. It literally took my breath away to see how many contraptions were connected to his exhausted body. He came to as I walked to his bedside and smiled from ear to ear. I kissed his lovable face and asked, “…how are you feeling?” He was understandably groggy and kept repeating the same things over and over again. “Why were people yelling at me?” … “What is happening?” … “All I want to do is lay down with you baby.” I just kept rubbing his head and telling him I would see him later that night for the next visitation time. I said goodbye and cried as I left the hospital to head home. I washed the smell out of our hospital saturated blankets and clothing and got back in the car to go see John again. I went in, thinking he would not remember seeing me earlier in the day but surprisingly he did. This time, the nurse allowed me to stay an extra hour by his side. Still connected to machines, John and I held hands and talked of memories we have shared since the first time we met. We laughed, kissed and just enjoyed each other’s company. I did not want that extra hour to end because I knew I had to go home and sleep alone for the first night since we were engaged. It was the longest night of my life….even though I was in our comfortable bed I could not sleep…I would reach out to the other side of the bed like I normally would to feel nothing. He was alone in the ICU and not next to me where he should have been. It was incredibly difficult.

This morning, as soon as I could, I made my way back to the hospital to sit with John until he got a regular room where there were no restrictions on who and how long visitors could stay. We finally made our way to our room in a newer wing of the hospital midmorning without the company of several cords and tubes in John. With all this trauma, still comes pain….so they luckily hooked John up to a morphine pump he controls himself. It is all to keep him comfortable and to concentrate on healing rather than the pain from the surgery.

Right now, as we are in this moment, we will see how this procedure goes before making further decisions. Yes, there has been growth in the chest by his lymph nodes and tumors. There are other options to try to fight this beast and John will be the one who ultimately decides what direction to go in next. With many tears, pains, procedures, hugs, kisses and hospital stays….we are continuing our struggle as best as we can. These past few days, by far, have been the craziest since this all started almost seven months ago….a complete and utter whirlwind. Thankfully, we had each other to go through it with and to live another day to continue this fight….together.

this morning...

I feel like I am a blogging machine lately. When things are going well, I hate to say it, but I am the farthest away from this thing. We celebrate together, laugh together and well, I would rather be doing that than writing. I need to learn to have this balance of releasing when things are good too. I tend to lean on my writing (and of course, we lean on each other) when things are not so good. I guess that is okay….is it?

We are still here…our second home…waiting for his primary team of doctors to come see John this morning. They will look into his counts this morning after the drain last night (2 days in a row so far, with a 3^rd on the horizon tonight) and see how his pain is being managed now. As I sit here…crossed legged on the couch…John sleeps before me and all I can do is stare at him. I know…weird. I have said it before in the blog and admit it…I creepily watch John sleep…a lot. His little movements and breathe are so intoxicating that all I can do is gawk. His legs crossed at his ankles, his hands by his sides, his mouth slightly open and his breath so quiet and patterned…I know he feels no pain right now. I think that is why I just look at him. I know he cannot feel anything but calm right now and have dreams of himself when he was/is better. He has these thoughts a lot.

So…good morning sweet family and friends. I will be back later to write more I am sure…and to make it a point to write more when things are good too. I need this balance….I need this release. Have a beautiful day and realize sometimes, things are not as bad as they seem. Be thankful for today and LOVE with every ounce of your being…no matter what. I know we do.

rest...

More like rest-less. Yes, restless. I am so completely restless when I am away from John. Today I went in to work to get caught up with everything. I reluctantly left his side this morning, hopped in the car to head home and felt sadness immediately. I missed him already. The need and want to be around him is indescribable and I know our family and friends feel it too. He has a beautiful, quiet spirit that feels so good to be around…why would I want to be anywhere else? As I finished getting ready at home and got back in my car to head to work, I was tempted to head right back to the hospital to be by his side again. The day steamrolled over me and it was finished in an instant. It was amazing how much I got caught up with today and how loving my work family is to us. They are so understanding of our journey and always want to help. The funny thing about all this is that John is the one who pushes me to go work to get my mind off things. He is the one who tells me to go home and sleep in our own bed (which I will never do, I cannot sleep unless he is near me) to get a good night’s rest. My mind is what he is worried about. My sleepless nights are what he is worried about. My heart is what he holds so close to his to protect it. His battered body and positive spirit never thinks of himself first….always others.

As far as today is concerned, there is nothing newer on his prognosis than the day before. We are waiting to see what his counts do after another drain today and the transfusion from the day before. Pain management is just as important as they test different “take home” methods on him to see which is more successful. This all has to be done all the while chemo is on the backburner. I will continue to keep everyone in the loop as the information is relayed to us. With that…we continue to fight.