day 5...

It is day 5 in the hospital and day 4 of drainage. They continued to release fluids from John’s chest every 6 hours…10 a.m., 4 p.m., 10 p.m. and 4 a.m…until this morning. At 10 a.m., the lung doctor came in, released the clamp on his tube and nothing happened. There was no drainage. It was unbelievable seeing the tube empty when for so long, we thought the rush his body was in to get rid of it was never going to end. For right now, he is done. I say “for right now” because the lung doctor indicated to us that he will more than likely be having a procedure on Tuesday to put in a flatter, more manageable, at home drain where we can do it ourselves. Their concern is getting him back on the treatment schedule and not keeping him in the hospital for the duration of chemotherapy...they want to send him home. If the buildup does happen again, John and I will be the ones responsible to get the mess out of his upper body. Home is where he wants to be. He has told me several times he does not want to think about home too often because he yearns to be there so much…even though he would be doing the same thing he is doing in the hospital…laying in bed.

You can imagine his lack of sleep on top of his lack of mobility can wear on him…on anyone really. It comes with the monotony, the restlessness, the anxiety, the interruptions for vitals, pain pills, and nausea medicine, and the constant chest pain of all organs moving back into place. Oh yeah, that’s right…all of his vital organs are now moving back into the correct place. This morning, the doctor proceeded to show us the x-rays from day one and today. On day one, John’s chest on the x-ray looked like it had a big white cloud engulfing his entire upper body. The lung doctor said, “Do you see this right here? (pointing to the far right side of his chest and side) Yeah, that is your heart and flattened out lungs.” We were floored. We could not believe he was storing all of that fluid for so long. The ‘after’ photo is completely different. It shows no white cloud and his heart and lungs in the proper place…more to the left side of his body. Soon thereafter, the nurse came into the hospital room to weigh John and this was another jaw dropping moment of the day. He basically lost 12 pounds of fluid the past 4 days of draining from his chest. It is incredible. He has been eating a lot more lately so we knew it was not body weight, it was fluid weight. He filled almost 5 full compartments that held over 2100 CC’s of liquid. Each time it would drain, he would begin to cough uncontrollably because of his lungs finally expanding after adjusting to the confined space they were in before. The words, “I have never seen so much fluid in one person’s chest,” keeps running through my mind from the lung doctor.

Other words keep running through my head and are always in the forefront of my thoughts as well. I share so much of this journey with everyone through this blog, but the words between my husband and I will always stay sacred and between the two of us. That is the bond we share in our marriage and something neither of us will break. There are certain things we discuss, share, laugh, cry and talk about that are intimate and worthy of no one else’s ears…but our own.

I am so thankful for the fight still left in John.


There are words...

When my mind is in a state of relaxation, I tend to look at things with clarity and optimism. Though some of it is in a dream sequence and are out of reach, I believe that one day they will be achievable. John and I always had this belief that we would someday win the lottery. I know…farfetched. We did not care. It was our little dream and was one we would hold on to for as long as we wanted or could. Since the diagnosis and the events that have unfolded these past few days, my mind has gone from relaxation to utter chaos. On the outside, I keep that momentum of transparency, but on the inside, there are knots of confusion, questions, and sadness. It is only by sheer strength and love that I have taken that chaos and put it in a “jar”. A symbolic jar that has to be opened at times for a sense of liberation, but I allow the jar to make an appearance every so often. What I have found in this releasing process is my writing. Who would have thought? Graduating with a journalism degree would lead me to write the story of my life as it plays out, day by day, with the most amazing man in the world. When I do decide to open the jar, words start flowing like I never thought they could. It feels good to write down all of the thoughts and striking feelings I have…especially for the man who still stands before me with utter brute strength and optimism. John is the one who brings forth my clarity. So this is why I write even with the chaos swirling above our heads trying to take control…it is my own release. I write to keep those from a distance, still close to our hearts with my words. I write to share our journey together, though before they were to be of future babies and happiness, now of perseverance and power. I write to take the jar out from time to time and make sense of the rumbling in my head…and to share it with you…all of you. That is why the many thanks proceed every entry I post. It is the support, it is the reading and it is also the many comments I receive whether it is on the blog, facebook, random text, email or phone call that make it easy to share.

I was chatting with an amazing soul and woman last night. She revealed to me that it is because of cancer, we are fortunate to show each other a love not everyone is capable of or even fortunate enough to show their partner in their lifetime. A love so deep and thoughtful, that caring and appreciation for one another through this time is what has opened up the new, stronger love we have now. I am not saying others do not have the love we have, but I see what she is sharing. For us, it is a different kind of love that has no limitations and has now bloomed to the peak of what we were previously capable of showing. So I want to thank her…for describing this upper echelon of love we have found to get us through this difficult time.

As many of you know, it has been an irregular couple of days. It did not go as scheduled and has ended with a hospital stay. The cycle of appointments started again on Monday as we went in for a shot to boost his low white blood cell count. It was to protect him and his immunity to illness. As scheduled, on Tuesday, we went in early that morning to get John’s CT scans made. These scans were going to be the result of the radiation treatments he has been going through the past month and a half. On Wednesday, we were to come in and get his results. Again, things did not go as planned. After the scans Tuesday, we were patiently awaiting his release to go home but were held back by the technician. He stated, “Hold on, I need to get in touch with your oncologist.” Confused we sat in the waiting room as we overheard the technicians whispering about the importance of their call and the irregularity of his scan. We turned to each other and wondered if all they saw was the mass the previous scans revealed and John proceeded to tell the technician, “We know what you are looking at…it is the tumor.” The tech turned to John and told him that was not his main concern and he needed to get a hold of the doctor. He finally did and sent us straight over the office on the other side of the hospital’s campus. As we walked in, the nurse practitioner hurried us into a back room and was talking on the phone to John’s oncologist saying, “Yes, he is here…yes, he is walking…he looks okay to me.” We were so confused and could tell in her urgency that something was seriously wrong. Finally, we got our answer. John had fluid in his chest. So much fluid, everyone was surprised he was walking around that day. So much fluid, it was constricting his air flow. So much fluid, it was pushing his lungs to the right side of his body and completely flattening them out. When the nurses and doctors put their stethoscopes’ to the left side of his chest they heard nothing…nothing at all. They gave us the option of going home, risking his lung collapsing and rushing him to the hospital in the middle of the night or checking him into the hospital to get the fluid drained first thing Wednesday morning with around the clock attention. We chose the latter. So this morning came and went and they periodically would check in with John to check his comfort level and vitals. We are fortunate to have the best nurses and their first priority is John’s health. Before we knew it, the afternoon rolled in…I was escorted out of the room for the doctor to complete the procedure bedside and 10 minutes later, he was done. They inserted a chest tube in his left side to drain 1300 CCs of fluid at first and then 500 more every 6 hours thereafter. They did not want to drain too much too quickly because it could cause complications with his blood pressure since his body acclimated itself to having the fluid inside of him in the first place. Slowly but surely. That is the only way they can do it.

So here we are…in the hospital. I have only gone home to shower and come right back to be by his side. I cannot stand being away from him when he needs me most. I watch him sleep now more than ever to ensure his breathing is starting to normalize. He now has more tubes jetting out of his body and has been poked and prodded so many times since all of this started, I cannot even imagine what he is feeling right now. He does not want to move an inch after this last procedure and has leg compressors around his calf to prevent blood clotting. Exhausting. I can see it in his face and hear it in his voice. Again, I cannot imagine. We still do not have the other results from the CT scan to see how well the radiation took care of the cancer. We will hopefully hear about that soon, but we are taking everything day by day and one step at a time. He has been through enough these past few days so anticipating one more thing will deter him from focusing on recovery from this procedure.

Keep those good thoughts coming. He is a trooper and has such a huge heart…one that is full and happy even through these times.

I am proud to call him my husband…other half…my soul mate.


11 months and 1 week today and a great weekend...

I was signing into our blog today and realized John and I have been married for 11 months and 1 week. We are soon to celebrate our 1 year anniversary of marriage and I cannot help but look back at all the memories we have shared together in this short time. One being the obvious at this very moment…the “C” word… but forget that word for a second. Just for one second when you think of John think of something other than what connotations lie behind it. Cancer does not define John or who he is as a person and/or being. There are several things I personally think about when I see him and look into his eyes. There are a flood of emotions, memories, and life goals I want to share with him now and into the future. This long future I have is a script in my mind that runs together like a melody or screenplay. It keeps repeating over and over again in my mind. He is this being who is so strong yet has such a sweet heart. Even through his pain and exertion, he still tells me he loves me more times in a day than I can even count. He is the one who reminds me of the team effort we go through and the one who reminds me what love is every day…even before what many think define him now.

Fighter. This is the one word his friends have defined John as since the beginning. This amazing group of friends back in Indiana have all rallied around John and taken the saying, “It takes a village” to an entirely different level. Since they found out about John, there have been a flood of calls, emails, events and Team Goddard bracelets from every angle. For their efforts, John and I devised a plan to…in a sense, thank them for everything they have done thus far. Since John was done with treatment, we decided to surprise everyone this past weekend at the Team Goddard Texas Hold’em Tournament at Justin and Jessica’s house. It was a plan we had in place for a few weeks and an extra incentive to make it to the end of the radiation cycle with his head held high. So there we were…walking up to their house just as excited as children on Christmas morning. The plan was for his closest friends to meet prior to the poker tournament so he could say a few words via Skype. Weeks before that, they were practicing and testing their laptops to ensure the meeting would run smoothly…but as you can see, we had something else more exciting in mind. John wanted to personally thank them for everything rather than over the computer. So John walked through the door and exclaimed, “I heard there is a poker tournament here tonight!” The looks on their faces were priceless. I thought I caught it all on video but unfortunately, I did not hit record fast enough. Their expressions were of shock and complete love and awe for this man. Some cried and some had no words…they were just so happy to see him and the trip was so much more worth it just for those few seconds of gratitude. Of course, seeing family this weekend was another beautiful highlight. We both love our parents, siblings and extended family so much and it feels good to see and hug each one of them.

It is not the monetary donations everyone has selflessly given to us that make the difference…though it is so unbelievably helpful and thoughtful, it is the way they think of him on a daily basis. All of these events do have the end result of wanting to raise money (gaming and poker tournaments, hog roasts, marathons, wrist bands, etc.) but that does not seem to be everyone’s main motivation. The main motivation is to help John in any way they can as much as they can. Every single person who shows up in support and in spirit loves him and wants to just be a part of the movement. That is why I posted the wrist bands in one of my entries and called it “The Movement”. I was showing how something so small could bellow so loud in support. The compassion that not only his friends show in Indy, but our incredible families, friends we cannot hug often enough, and my remarkable coworkers are all a part of this movement.

So as I sit here on the plane with our hearts and our spirits flying higher, I look at my partner sitting right next to me and wonder where I would be without him. He has taught me so much about love and life way before his diagnosis…and since then, about solidarity. This is far from over, but after this rejuvenating trip with family and friends, we are more than ready. Thank you to everyone, once again, for being a part of our lives and a part of what lies ahead. He is what we are all fighting for…so it makes it pretty easy to battle.


And today was it...

Today marked the final day of radiation. Our spirits flew high as we drove into the hospital parking lot for his last treatment. We could not believe it. We kept looking at each other to reassure those positive thoughts of completion as we pulled into the front row of the Cancer Center. “Here we go!” I exclaimed as we exited the car. Each memorable step rang in my ears as we held hands pacing through the hallway toward the led filled room. Just like that, it was over…done….the 25 long, excruciating treatment plan was over. What seemed to take forever to get here was done and gone. After that, a little more light was shed on what steps we are to take next as far as chemo is concerned. Next week, we have a follow up with the oncologist and more testing. An endoscopy will follow to give the team more information on how well the radiation did these past five weeks. From there, chemotherapy will take place and the healing will continue. Though chemo is known to kill off both good and bad blood cells, we think this will be the final leg in the critical fight John has put up against this disease.

I have been keeping an electronic diary along with this blog of John. Photos and videos showing his strength and some of his words…though never many, of how he feels and what he has gone through thus far. You have seen some photos and now I would like to share some of his words…in his own voice. The first video is of when we found out he had stage 4 esophageal cancer and we decided to go to the beach to just get away from it all.
 This next video is right after John got his port put in to pump his body full of the chemotherapy medication. He was pretty stiff since his surgery was that same day. As you can see, his body was drawn on for his planned radiation "road map" as we called it. 
This third video was right after his first round of chemo and his fourth sitting in radiation. As you can see, his beard continues to grow. :) 
This last video was shot today...the last day of part one in his journey. As you can tell, John does not say much, but his face says it all. You can also see the progression in his weight loss throughout the videos.

Thank you again for following. It has not been easy, but he is incredibly strong. Who knew this would happen...and who knew he would be such a fighter...I did, we all did.


23 down…2 more to go…

Original title huh? I remember writing this same verbiage…back in mid-April, only backwards. We were 2 days into his radiation voyage and could not see the end in sight with 23 more to go. Now the light is at the end of the tunnel. John only has 2 more radiation treatments to go along with 1 part chemotherapy tomorrow as well. The oncologist recommended to still continue with the Monday appointment of chemo as scheduled to “boost” what radiation he has left. After all of this, he goes in for more testing, more second opinions, and his full blown chemo timetable will be scheduled from there.

Through all of this, I feel like I ask John the same rotating questions; “How are you feeling?” “What do you feel right now?” “Do you feel like throwing up?” “Do you feel like getting something in your belly?” Poor thing. I am constantly prodding him to make sure he does not need anything and just not asking. He melts my heart daily by turning to me and saying, “Thank you.” Those two little words that mean so much make it that much easier to wake up with him every night when he gets sick, rub his feet to relieve his thoughts of nausea, and trying my best to make him laugh as much as I can day to day. I know why he is saying those words, but they are not needed. He does not have to say it because we are doing this together…he is not a burden. Every time he says it, I immediately think of our vows… “…through sickness and in health”. Who would have thought those vows would come into fruition not even a year into our marriage? Who would have thought at such a young age? We didn’t but this is the hand we have been dealt. I should be thanking him. He is patient, loving, kind and still looks at me with his big blue eyes just as he did the first time we said we loved each other.

So here WE go. 2 more treatments with still a long road ahead of us, but one we CAN handle...together. He can do this. He will do this. He is pretty amazing isn’t he?


Can you imagine?

The tumor is rearing its ugly head. John even said himself he can feel it pushing out on his chest from time to time. It seems to get more and more annoyed as we continue through treatment and try to kill off its blistering hold it has on his midsection. The radiologist said the radiation was going to evolve and make him feel worse toward the end of treatment but it does not mean the cancer is winning. We are hoping that is it…just the radiation. Just a week ago he was able to eat at least twice a day and now, it has turned into one Ensure a day through his feeding tube. He keeps telling me he is trying with frustration in his voice because I know all he wants to do is get better and for the pain to just end. His weight is very important and we have to maintain it as much as we can. We found out this week he is now down to 189. 189 is probably the “average/normal” weight for a man his height but to me and everyone else, John has always been a muscular, thick built man…189 is an anomaly. I want to try everything just to get him comfortable and to get something in his stomach, but the nausea always takes over and can, at times, be debilitating.

Since we found out almost two months ago, John and I have been talking almost every day about our beautiful past together. This on top of everything else we have to talk about seems to cure the sadness of the day. We laugh and joke about the journey we have had from the first time we met to where we are today. We laugh at the times we had with friends in college and how much we loved our first little place together in Nashville. We are very fortunate to have such a great relationship. We have never had a big fight and we have hit rock bottom together a few times…this making us stronger as one. This part, like many others, will just be a memory. One we can look back on and maybe not laugh like we do the others, but remember. I cannot say this enough…my husband is incredible. I cannot even begin to imagine what he feels everyday and every single sleepless night. Yes, I am up with him every time, but he literally does not sleep anticipating the next nauseating removal.

With the tumor fighting back, he fights back even harder. He is my hero…funny thing is…he has always been my hero. This fight just reminds me of that even more so, every single day.


The countdown begins...

We are in the final stretch. It is an unbelievable feeling I have right now running through my veins. I look at him and ask if he feels the same way and he keeps saying, “I can’t wait.” He has completed 18 rounds of radiation and he has 7 more to go…Monday through Friday this week and then Monday and Tuesday of next week. From there, we find out what the next plan of action will be and more tests to see how well radiation took care of the repulsiveness living in his body. After the infamous “7” and the tests, we will then find out what kind of full blown chemotherapy treatments he will have to endure. Endure. More like endurance. It is all a matter of endurance from this point on. Who is going to win? John or the cancer? The answer…he will far outlast the cancer and what it thinks it has planned for him.

Through this we have stayed positive but the journey is far from over…he knows how much more of a beating his body still has to go through. The number 7 seems so small compared to the initial 25 we were given in the beginning. Chemotherapy is still tomorrow, but we are not sure of the next Monday considering he will not be going through a full week of radiation…that is a question we will be asking the oncologist tomorrow.

This has been a tough weekend for John. The radiation specialist told us his eating would soon slow down and become uncomfortable once again…he was right. He did say it was not because the radiation was not working or because the tumor was winning the fight but rather the radiation was basically frying his insides. The amount of radiation he is undergoing and where they are targeting the treatment is destroying the “bad” along with the “good”. You can see it in his face every time I ask him if he wants to eat. This excruciating look comes over him as he shakes his head no. It is then we resort to the feeding tube getting as much nutrition as we can into him. Again, like I said before, it is his daily battle with food and I wish everyone can see his determination as he tries so hard to eat.

Food…a battle. Nausea…a battle. Cancer…his ultimate battle. John…the soon victor.


The Movement...

Through all of this, I have noticed a movement. The love for John has always run deep for those who have met him…but the other day, I realized how far it has really reached. I was sitting in a meeting at work this past Monday and conveniently noticed something amazing during the question and answer portion of the event…wrist bands. Beautiful, blue wrist bands with “Team Goddard” stretched across them. As hands kept going up to ask a question, I kept noticing that same band…on everyone. As I left the meeting, I saw it on more and more people walking around the office. When I logged in to the social media sites…I saw this…everywhere:

Do you see what I am saying? Do you see what I see? This movement has taken over and is a force we are so thankful to see. It was all started by the boys who love him most back in Indiana and has now gone nationwide. It is unreal how a simple wristband can speak volumes. People who we do not even know are wearing and asking for them. My mom told me an amazing story of a woman she met tonight who works for Purdue University (Boiler Up!). She even wanted to know all about John and yes, buy some wrist bands. It is a simple piece of rubber, around the wrist...it means more to us than any of you will ever really know.


The meaning...

What does food mean to you? What does food do for you? Why do you crave certain foods? Taste, nourishment, organic, fatty, salty, or sweet? Imagine food does not have an importance to you. Imagine eating just to get something in your body to maintain your weight. Imagine you do not crave your favorite foods anymore. This is now John’s daily battle with food. These feelings coming from the man who would tell me what he wanted the menu to be for the week. This coming from the man who would get two full helpings of my cooking every night. This coming from the man who was a healthy 212 pounds when everything started. Now, he sits before me at 195 and has to convince himself to have some sort of appetite to get nutrition in his stomach. We have been utilizing his feeding tube quite a bit and making sure he can still try swallowing too. What has been the struggle day to day is the full feeling he constantly has due to his lymph nodes in his stomach being swollen. In John’s words, “It feels like I just got done eating at a massive buffet…all the time.” To John, food and nutrition is complex and together we try to get as much in him as possible. He has shown such strength and perseverance. It is unreal how this part of his life is so different, yet his drive is the same. He looks at me all the time and says, “Baby, I ate a lot today.” Chemo, radiation, nausea and his fight against cancer are not the only struggles he faces day to day…it is eating.

This past Friday marked the halfway point in John’s radiation treatment schedule. This is an incredible feat since we thought the beginning would never get here and now we are already halfway. With the next two and half weeks looming, we look at what lies ahead…3 more rounds of chemo and 12 more rounds of radiation. Both of us agreed that if we let it, the car could probably drive itself to the hospital we frequent day to day. I know what kinds of cookies they are serving in the cafeteria each week because the radiation nurse reminds me daily. We could walk in the building with our eyes closed and tell you how many chairs are in the waiting room and how John will knock off the pillow on the radiation machine when done with treatment for that day. Monotonous…yes. Worth every second of repetition…absolutely. Wishing I could take every ounce of pain he has to endure day to day…even more so. There is so much that goes along with our routine and he has the most patience of all. There is stability in his eyes even though I can tell he is tired of the pain…but not of the journey.

I am so proud of him.

We have such strong arms around us right now. Those who come to visit like Susie, Meg and Chad were here to love him and show their support. Those who have been putting together events in other states like John’s friends from childhood and college. Those who I work with and who have given so much of themselves during this time. Those who write beautiful words and participate in marathons who know only me yet feel the love for John just as much. Family and friends alike have shown their support and it gives us such strength to keep going on this habitual path with our heads held high. We will not be defeated and he will stand tall through all of this….holding my hand….on the foundation of your love.