You will notice a different writing style in this post. I have decided to give you faithful readers and followers some of my words and break the silence. I do not have the writing skills my wife has but I will try my best. I want to first say thank you to so many people. Everyone who has made donations to help with my medical bills. Everyone who has donated their time by visiting not only once, but multiple times. Everyone who has sent cards and well wishes. There are too many to thank individually.
One person does stand out and is the reason I am writing this for everyone to read. I can’t explain how special she is and how much she means to me. My wife is the most beautiful woman in the world. Without her this would all be over, I would already be dead or would have given up. She has done more for me than I could ever imagine. She is there in the bad days and there in the not so bad days. It is hard to say any day is good, but some are easier than others. Cat is there for me when we are crying together for hours and she is there for me when we are laughing and joking. She never leaves my side no matter how bad I look. I don’t understand how she does it. I say thank you probably 20 times a day to her and everyday she tells me I don’t have to say thank you. I just wish I could explain to her how much she means to me. Baby love, you mean more to me than you will ever know and more than I could ever express in words. Thank you for everything that you do.
Recently I was asked by someone very close to me, “how come you are doing this to yourself?” The question means how come I am poisoning my body and making myself sick for an entire week when the prognosis is still just as bad. Well I was given 6 months to live without any treatment at all. No radiation and no chemo I would be dead by September/October. With treatment I could live up to 1 or 2 years. There is no way to tell. Now I have more prescriptions and pill bottles than I have ever seen in my life. I am losing hair off my body from the chemo. Radiation made me feel worse than I have ever felt in my entire life. The headaches have started because I think the cancer has started spreading north. All of this makes everyday difficult. I have lost all the muscle in my body and am now down to 152 pounds. I started March 8th when I was diagnosed at 210 pounds. No muscle and the nausea makes everyday hard. I know I am supposed to be positive and everyone keeps saying to keep a positive attitude. I am explaining these negative details to emphasize why I am doing this to myself, why I am poisoning myself and putting myself through all this at the hope of living another 6 months. The whole reason is because of my wife. I love her more than anything in this world. I never thought I would meet someone so special and so perfect. To those of you that have not met your special person in life yet, keep looking, that person is out there. I truly believe there is one other person out there for all of us. To those of you that have found that one person I hope you are as happy as Cat and I. She and I have never had a fight. We tell each other everyday, I love you. Ever since the first day we have been together we never lost focus on what is most important in life, each other. She is the reason I fight everyday. She is the reason I put myself through this. If I have to put myself through hell for 6 months just to have my life extended by one day, it is all worth it. Because I know that one more day is going to be with her. I will get to experience a love and connection for that one day most can only dream about.
I hope this helps describe a little about what I am going through and why I am going through it. It helps a little to put my thoughts down and not keep them inside all of the time.
6.29.2010
6.27.2010
what really counts...
After the end to a phenomenal weekend, John and I had to start the week over again with the rituals known as doctor’s appointments and preparation. Monday was his first follow up after the week of chemo prior to the surprise anniversary party. He did the routine questions and began to tap on John’s back just like any other week. “Have you been draining every day?” the oncologist requested. “Every other day,” we said in unison. He began to advise us to drain every day because he “was pretty full of fluid”. It made the most sense to send him over for an x-ray to see how he was still filling up and to take the results over to the lung doctor for that next follow up appointment. He then began to describe John’s red and white counts. They were extremely low and he needed two separate shots to boost them up for the next round of chemo set to happen a week from Tuesday. The two shots noticeably made him uncomfortable, but they were needed.
The rest of the week consisted of more nausea and vomiting…but now headaches have come into play. I see the exhausting toll it has on top of everything else he has to deal with…it is agonizing to watch that daily struggle with the combination of “migraine-like” headaches and…well, everything else he has to deal with. This is something we will bring up to the oncologist tomorrow and see what he can do to help.
The hair loss has also started. Last week, John looked down at his chest before hopping in the bath and saw a little bald spot. We laughed together about it for a few moments because it was just that tiny, hairless spot. It has only been within the last few days that the hair on top of his head has loosened up as well. Just by simply running my hand over his scalp, it would shed some of his hairs off as if the chemo is slowly melting the roots away. This prompted us to cut his hair and trim his beard today. I have to admit, he looks pretty handsome without a beard again. The nurses explained his hair loss would start anywhere from one to two weeks after his first treatment…now we wait to see what the next treatment will bring. After this second round of chemo next week, John will get more testing done to see what steps will be next. We are hoping to see great progress after this second round of treatment…we will see great progress….I know it.
Now for the title…the real meaning of the title. What really counts are the milestones we celebrate together. Yes, obviously his red and white blood counts are super important with the restrictions on visitors, limitations from certain raw fruits and vegetables and sanitary hand washings religiously. What really counts are theses great feats John has overcome though small to others, are massive to us. He has put great effort into getting out of bed every day and making it a priority to gain some weight and his strength again. It is incredibly difficult to do so, but he is trying. That is what counts along with our little celebrations. For him to really put a conscious effort into everything he does day to day shows how much fight he has left in him.
I know it has been a while since I have posted anything. I guess I did not feel led to write the past few days. My thoughts did not seem to connect and the word sleep cannot seem to find its way into my vocabulary. We told each other the only way we can make it through is to take each day minute by minute, hour by hour. I believe in him and he believes in me. More than anything, it has felt great to have the help from my mom these past few weeks so I could go back to work a few days and incredible help around the house. I love her so much. My work family is also so supportive still and our friends continue to check in with words of love. Thank you again…all of you.
The rest of the week consisted of more nausea and vomiting…but now headaches have come into play. I see the exhausting toll it has on top of everything else he has to deal with…it is agonizing to watch that daily struggle with the combination of “migraine-like” headaches and…well, everything else he has to deal with. This is something we will bring up to the oncologist tomorrow and see what he can do to help.
The hair loss has also started. Last week, John looked down at his chest before hopping in the bath and saw a little bald spot. We laughed together about it for a few moments because it was just that tiny, hairless spot. It has only been within the last few days that the hair on top of his head has loosened up as well. Just by simply running my hand over his scalp, it would shed some of his hairs off as if the chemo is slowly melting the roots away. This prompted us to cut his hair and trim his beard today. I have to admit, he looks pretty handsome without a beard again. The nurses explained his hair loss would start anywhere from one to two weeks after his first treatment…now we wait to see what the next treatment will bring. After this second round of chemo next week, John will get more testing done to see what steps will be next. We are hoping to see great progress after this second round of treatment…we will see great progress….I know it.
Now for the title…the real meaning of the title. What really counts are the milestones we celebrate together. Yes, obviously his red and white blood counts are super important with the restrictions on visitors, limitations from certain raw fruits and vegetables and sanitary hand washings religiously. What really counts are theses great feats John has overcome though small to others, are massive to us. He has put great effort into getting out of bed every day and making it a priority to gain some weight and his strength again. It is incredibly difficult to do so, but he is trying. That is what counts along with our little celebrations. For him to really put a conscious effort into everything he does day to day shows how much fight he has left in him.
I know it has been a while since I have posted anything. I guess I did not feel led to write the past few days. My thoughts did not seem to connect and the word sleep cannot seem to find its way into my vocabulary. We told each other the only way we can make it through is to take each day minute by minute, hour by hour. I believe in him and he believes in me. More than anything, it has felt great to have the help from my mom these past few weeks so I could go back to work a few days and incredible help around the house. I love her so much. My work family is also so supportive still and our friends continue to check in with words of love. Thank you again…all of you.
6.20.2010
the surprise...
Excited and curious, our beautiful friend and roommate Michelle told us to be ready by 7:15 Friday evening and she was not going to give us anymore details from there. To ease our worry of John’s strength and ability that night, she did reveal we would not be going far and there would be a place for him to rest if needed. We proceeded to get cleaned up, dressed and met her downstairs. She handed me a bandana and said, “…here, put this on in the car” with a huge smile on her face. We hopped in the red Suzuki and off we went…John with his eyes closed in the front seat and I was in the back with the blue blindfold over my eyes, giggling with excitement. I had no idea where we were headed, but I knew I could not wait to spend it with John outside of the house. Quickly, we park and Michelle helped me out of the car. As she guided the two blind mice, I seemed to trip over my own feet the entire way. From the heat of Florida, we made it into an air-conditioned area and she positioned the two of us accordingly. As my heart started to beat faster, I realized it was completely quiet where we stood. I had a brief glimpse in my mind that it could be just a small table and two chairs for us to have a quiet dinner somewhere together. All of a sudden, the blindfold was taken off and I looked up to see everyone I love standing in a room before me yelling, “HAPPY ANNIVERSARY!!!” Of course, I immediately burst into tears and hugged John in amazement. All I remember saying is “Oh my GOD!” over and over again and tears streaming down my face uncontrollably. It was the most beautiful site I have ever seen. The surprise went above and beyond what I thought it could have been or even hoped for. As I made it through the room I saw so many people I cared about and realized, they were there to celebrate John and I as a couple. It felt good to hug everyone in that room, one by one, and to feel their love upon us. The night was a hit full of food, cake, and laughs. The past two weeks have been the hardest for John and I know he needed to get out of the house more than anything. I wish the night would have lasted forever, and before I knew it, the night was over. I have played Friday night over and over again in my head and all I do is smile. We are so grateful and lucky to have so many people who love us and only want us to be happy. This party and plan went back before John was diagnosed and was the perfect way to forget about cancer for a few hours just to celebrate our love, purely and simply. So again, I must thank everyone who was a part of the plan and a part of the surprise. I am in awe of your love and generosity.
So that Friday segued into Saturday with family and friends around who flew in specifically for the surprise anniversary party from Indiana. John’s mom and second mom, four beautiful friends, my mom, and Michelle all gathered together to play games and eat a delightful meal made by my talented chef of a mother. :) Another day full of lifting our spirits. John was beat after the two full days of activity from being confined to his bed for the past few weeks, but he does smile every time I say, “Remember when (such and such) happened this weekend?” Then we rolled into today and celebrated our fathers. Though they both live in Indiana, we spoke of them today with such love and gratitude for who they are and what they mean to us. We miss them more than anything and talking to them today was what we needed to put a big, beautiful bow on a fantastic weekend.
Through this jungle of illness and what has felt trouncing, we have pushed through. Who knew this would put such a halt to our lives and really test our strength as a couple. It has tested, we have passed…it has not been easy, but we keep going and fighting together with a countless array of individuals there with us. We must keep going and this journey is far from over…and it feels good to say that it does not look like anyone is going anywhere.
So that Friday segued into Saturday with family and friends around who flew in specifically for the surprise anniversary party from Indiana. John’s mom and second mom, four beautiful friends, my mom, and Michelle all gathered together to play games and eat a delightful meal made by my talented chef of a mother. :) Another day full of lifting our spirits. John was beat after the two full days of activity from being confined to his bed for the past few weeks, but he does smile every time I say, “Remember when (such and such) happened this weekend?” Then we rolled into today and celebrated our fathers. Though they both live in Indiana, we spoke of them today with such love and gratitude for who they are and what they mean to us. We miss them more than anything and talking to them today was what we needed to put a big, beautiful bow on a fantastic weekend.
Through this jungle of illness and what has felt trouncing, we have pushed through. Who knew this would put such a halt to our lives and really test our strength as a couple. It has tested, we have passed…it has not been easy, but we keep going and fighting together with a countless array of individuals there with us. We must keep going and this journey is far from over…and it feels good to say that it does not look like anyone is going anywhere.
6.17.2010
our anniversary...
How do I sum up our first year together? There are not enough thoughtful words in the English dictionary to make it worthwhile. We celebrated our one year wedding anniversary yesterday and made the best out of our situation together now. We could not go out to eat or out to a movie, but rather enjoyed each other’s company inside from the comfort of our own home…isn’t that the point? To fully take pleasure in one another without conditions is what the day should be all about. It is to look back on your wedding day and do nothing but smile. I know we did yesterday and do daily. We have talked of our wedding day many times and how we would never take back our decision to elope. Yesterday, on our anniversary, we reminisced again. “Do you remember when…” or “I laughed so hard when…” seemed to start every sentence yesterday as we discussed our journey thus far. We did not talk about cancer, we did not talk about nausea, we did not talk about struggle, and we certainly did not cry. Yesterday was a good day through and through because we felt the love flow more than ever.
He has put on a strong front this past week. He has had chemo pumping into his veins day and night, nonstop since Monday. We cannot wait to go to the doctor tomorrow afternoon and get the device removed from his port so we can have a semi normal life again. From there, he gets a two week break to then do it all over again. How many more times?...we do not know. All we know is to take it one day at a time and get through what is in front of us. We are still draining his chest every other day, 600 CCs every time. It is still the same sterile process and we have to be so careful to keep everything clean and sanitary in the practice. That is another thing we are looking forward to…the draining to stop. The oncologist and the lung specialist stated the draining may stop (without surgery) while chemo is in play…we hope the chemo obviously takes care of the cancer too. There are so many things going on in his body. With his weight loss now at 50 pounds, I wonder how much more it can take. There is an unmistakable drive he has in his eyes and one that is still full of care. It was even more beautiful to see on our day yesterday. I know I talk about it in every post but it is true. I am a lucky woman to not only be married to this man, to take care of him, to be his nurse, to be the woman he is in love with, but to be in the presence of such power. I tell him daily I am so proud of him. I know his family and friends are as well…I just tend to be the messenger of those kind words and the arms that get to hold him day after day.
So here we go…almost done with his first round of chemo and it has been incredibly tough but we made it. We still celebrated our one year anniversary with great admiration for one another and John joked today and said, “364 more days until our next one baby.” That made my day today…and he is right. There will be a next one and quite a few more after that. Thanks for following along…please continue to join us for the next 364 to then tell you about our second wedding anniversary together…won’t you?
He has put on a strong front this past week. He has had chemo pumping into his veins day and night, nonstop since Monday. We cannot wait to go to the doctor tomorrow afternoon and get the device removed from his port so we can have a semi normal life again. From there, he gets a two week break to then do it all over again. How many more times?...we do not know. All we know is to take it one day at a time and get through what is in front of us. We are still draining his chest every other day, 600 CCs every time. It is still the same sterile process and we have to be so careful to keep everything clean and sanitary in the practice. That is another thing we are looking forward to…the draining to stop. The oncologist and the lung specialist stated the draining may stop (without surgery) while chemo is in play…we hope the chemo obviously takes care of the cancer too. There are so many things going on in his body. With his weight loss now at 50 pounds, I wonder how much more it can take. There is an unmistakable drive he has in his eyes and one that is still full of care. It was even more beautiful to see on our day yesterday. I know I talk about it in every post but it is true. I am a lucky woman to not only be married to this man, to take care of him, to be his nurse, to be the woman he is in love with, but to be in the presence of such power. I tell him daily I am so proud of him. I know his family and friends are as well…I just tend to be the messenger of those kind words and the arms that get to hold him day after day.
So here we go…almost done with his first round of chemo and it has been incredibly tough but we made it. We still celebrated our one year anniversary with great admiration for one another and John joked today and said, “364 more days until our next one baby.” That made my day today…and he is right. There will be a next one and quite a few more after that. Thanks for following along…please continue to join us for the next 364 to then tell you about our second wedding anniversary together…won’t you?
6.13.2010
standing back up....
How do I sum up the thoughts and emotions of the last 6 days? We both seemed to have fallen on our faces incredibly hard this week. After the news of Monday and the draining realization of what he has to endure next, there seemed to be no other way to go but up from that day. Up did not come about. Even further down seemed to have happened. We have been the most optimistic duo since we were brought together years prior and even more so since the diagnosis over three months ago, but something was different. I really do think we are allowed to have these lower feelings because “harder” and “more difficult” times were inevitable. It had to hit us in the face sometime. This realization is not one of defeat but one of feeling period. It has been emotional from the beginning, but we really had a huge rush overcome us this week. We really felt how this cancer is a part of our lives.
I went to yoga a few times this week and it was the much needed release I was yearning for on top of my writing. Before one practice in particular, words weighed heavy on my heart…in a good way. “It is human nature to want to control everything…and this is something you cannot control,” a beautiful voice said to me that morning. She was right. For something we cannot control and that does not have a face, we seem to be staring it down in opposition every second of the day. It is a daily battle. My favorite part of every yoga class is the beginning and this morning was no different. We were told to stand up, breathe, release, and picture who/what you were going to dedicate your practice to that morning. It has always been John but this time it was even more evident. My eyes closed, I saw my husband’s face and big, blue eyes dancing in my mind…and I lost it. With this seemingly impossible week we both endured behind us, I realized now more than ever, why I personally was fighting. It was for my husband…yes, it was always for John and for our future together, but it was also for every embrace we have yet to share, for every tear of joy we haven’t shed, and for that pitter patter of little feet we have yet to hear. That is why my head was a jumbled mess this past week because of falling so hard, hand in hand with John, but it turned right around this past weekend. Do not get me wrong, I am not saying the difficulty is behind us, but slowly we are still rapping our heads around what is happening and slowly we are getting stronger…together.
With all of these emotions we shared this past week came the anticipation of his chemotherapy regimen he has to continue starting tomorrow. It will be five full days of treatment, nonstop, running through his veins. He had to do one day a week along with radiation just a few short weeks ago and this time it will be five. I know this has been weighing heavily on his mind and we had talked about how much harder this will be than the first go around. “I am getting pumped full of poison,” he said today. With both our lower lips quivering through the discussion, we held each other’s hand and knew there are no right words for each other at that point…only actions of touch and feelings of love is what seems to comfort us in the moment. I continue to be amazed and proud of John…he has never stopped knowing he will overcome even through the sadness and bad news we received last week. Tomorrow I will be by his side just like I have always been and I know everyone will be there with us in spirit as well…and for that, we are so thankful.
I went to yoga a few times this week and it was the much needed release I was yearning for on top of my writing. Before one practice in particular, words weighed heavy on my heart…in a good way. “It is human nature to want to control everything…and this is something you cannot control,” a beautiful voice said to me that morning. She was right. For something we cannot control and that does not have a face, we seem to be staring it down in opposition every second of the day. It is a daily battle. My favorite part of every yoga class is the beginning and this morning was no different. We were told to stand up, breathe, release, and picture who/what you were going to dedicate your practice to that morning. It has always been John but this time it was even more evident. My eyes closed, I saw my husband’s face and big, blue eyes dancing in my mind…and I lost it. With this seemingly impossible week we both endured behind us, I realized now more than ever, why I personally was fighting. It was for my husband…yes, it was always for John and for our future together, but it was also for every embrace we have yet to share, for every tear of joy we haven’t shed, and for that pitter patter of little feet we have yet to hear. That is why my head was a jumbled mess this past week because of falling so hard, hand in hand with John, but it turned right around this past weekend. Do not get me wrong, I am not saying the difficulty is behind us, but slowly we are still rapping our heads around what is happening and slowly we are getting stronger…together.
With all of these emotions we shared this past week came the anticipation of his chemotherapy regimen he has to continue starting tomorrow. It will be five full days of treatment, nonstop, running through his veins. He had to do one day a week along with radiation just a few short weeks ago and this time it will be five. I know this has been weighing heavily on his mind and we had talked about how much harder this will be than the first go around. “I am getting pumped full of poison,” he said today. With both our lower lips quivering through the discussion, we held each other’s hand and knew there are no right words for each other at that point…only actions of touch and feelings of love is what seems to comfort us in the moment. I continue to be amazed and proud of John…he has never stopped knowing he will overcome even through the sadness and bad news we received last week. Tomorrow I will be by his side just like I have always been and I know everyone will be there with us in spirit as well…and for that, we are so thankful.
6.08.2010
results...
March 10th I felt my world stop…yesterday, I felt it halt again.
We optimistically walked through the front entrance of the oncology office expecting to hear good news that morning. That all changed when the doctor walked through the door of the examination room. He began by asking the normal questions: “How are you feeling John?” “Where is the pain?” “How is the at home draining going?” Then, there seemed to be a strange calm come over the room before the doctor opened his mouth again and we felt the storm hit. “It has progressed.” Those words hit both of us like a ton of bricks. Every ounce of breath was stripped from my body and I felt like I could not inhale. Progression…gradual advancement…forward movement…radiation had not done what we wanted it to do. We thought he was going to say something completely different. John, though battling the fluid in his chest and the pain, has been eating. Yes, eating more food than he has since February. We celebrate all of these little victories so of course, we thought this was the first step in his road to recovery. As my eyes flooded with tears, the questions began to pour out of my mouth. “How could this happen?” “What does this mean?” “What does the tumor look like now?” “I am so confused…” Just like that, I was then broken and the entire time I was asking the doctor questions, I was staring at John with such disbelief. My angel. How was he feeling hearing all of this? I felt so horrible in this moment for him. In those few minutes, our lives were turned upside down once again. The doctor began to explain how he wanted to proceed with chemotherapy and keep fighting. The size of the tumor could not be determined by the scan and another endoscopy will have to be done later.
We were escorted out to the main area to await the instructions for how chemo would go and what he could expect through full blown treatment. Even though we waited for just a few minutes, it seemed so excruciatingly long. Finally, it was explained that John would receive three kinds of chemotherapy treatment. Two full doses at the doctor on Monday and then a third would be administered continually Monday through Friday at home. It is the most aggressive form of treatment available and since he is so young, they believe he can handle the intake. The walk back to the car was somber as we held hands tightly in support of one another. As we walked through the front door and headed to our room, we both began to break down once again. We sat on our bed, cried, held each other and talked for hours about the results and steps to take next. “I want to fight…I want to fight for us,” he said. For us to be together forever. He is so incredibly brave and it is unreal how resilient his spirit has been.
So, this is where we stand. This is where John has always stood… never give up. It constantly runs through my head…could you blame him for being exhausted? For being tired of all the tubes and wires jetting out of his body? For dreading the 5 days straight of treatment that will be running through his body after the 25 bouts of radiation he just endured? For all the damn questions? I can’t. At the end of the day, he is undergoing everything and nobody else feels his daily struggles. No matter how much I, or any of us, wish to take some of it away from him, it just is not possible. More and more every day he amazes me and I would not want to be anywhere else but by his side in his support, showing him my unconditional love and being his rock when he feels like leaning. His vitality is unwavering and every second I have with him means more to me than he will ever know. There is still a long road ahead of us but one we are going to continue to battle head on.
We optimistically walked through the front entrance of the oncology office expecting to hear good news that morning. That all changed when the doctor walked through the door of the examination room. He began by asking the normal questions: “How are you feeling John?” “Where is the pain?” “How is the at home draining going?” Then, there seemed to be a strange calm come over the room before the doctor opened his mouth again and we felt the storm hit. “It has progressed.” Those words hit both of us like a ton of bricks. Every ounce of breath was stripped from my body and I felt like I could not inhale. Progression…gradual advancement…forward movement…radiation had not done what we wanted it to do. We thought he was going to say something completely different. John, though battling the fluid in his chest and the pain, has been eating. Yes, eating more food than he has since February. We celebrate all of these little victories so of course, we thought this was the first step in his road to recovery. As my eyes flooded with tears, the questions began to pour out of my mouth. “How could this happen?” “What does this mean?” “What does the tumor look like now?” “I am so confused…” Just like that, I was then broken and the entire time I was asking the doctor questions, I was staring at John with such disbelief. My angel. How was he feeling hearing all of this? I felt so horrible in this moment for him. In those few minutes, our lives were turned upside down once again. The doctor began to explain how he wanted to proceed with chemotherapy and keep fighting. The size of the tumor could not be determined by the scan and another endoscopy will have to be done later.
We were escorted out to the main area to await the instructions for how chemo would go and what he could expect through full blown treatment. Even though we waited for just a few minutes, it seemed so excruciatingly long. Finally, it was explained that John would receive three kinds of chemotherapy treatment. Two full doses at the doctor on Monday and then a third would be administered continually Monday through Friday at home. It is the most aggressive form of treatment available and since he is so young, they believe he can handle the intake. The walk back to the car was somber as we held hands tightly in support of one another. As we walked through the front door and headed to our room, we both began to break down once again. We sat on our bed, cried, held each other and talked for hours about the results and steps to take next. “I want to fight…I want to fight for us,” he said. For us to be together forever. He is so incredibly brave and it is unreal how resilient his spirit has been.
So, this is where we stand. This is where John has always stood… never give up. It constantly runs through my head…could you blame him for being exhausted? For being tired of all the tubes and wires jetting out of his body? For dreading the 5 days straight of treatment that will be running through his body after the 25 bouts of radiation he just endured? For all the damn questions? I can’t. At the end of the day, he is undergoing everything and nobody else feels his daily struggles. No matter how much I, or any of us, wish to take some of it away from him, it just is not possible. More and more every day he amazes me and I would not want to be anywhere else but by his side in his support, showing him my unconditional love and being his rock when he feels like leaning. His vitality is unwavering and every second I have with him means more to me than he will ever know. There is still a long road ahead of us but one we are going to continue to battle head on.
6.05.2010
home...
When you walk into your home, even if you were blindfolded, you would know exactly where you were standing. There is a feeling you get, a certain smell you remember, and an intense sense of comfort you have stepping through your front door. We finally feel that now…because we are home. Our own bed, our own shower, our own smell, and our own life again. No more scheduled nurses and doctors parading through the door with no sleep, no more bleach smell, no more paper sheets. Do not get me wrong, we are so thankful for all the great care, but we are even more relaxed within these four walls. At the same time, home comes with a lot of responsibility for us.
We stayed in the hospital for a total of 9 days. Days 6 and 7 consisted of waiting. Since it was the weekend and Memorial Day, there were no scheduled times surgeons were working. John was scheduled for Tuesday to get the large drainage tube removed for him to be then fitted with a smaller, at home drainage tube. Tuesday then turned into Wednesday due to the backlog they had in the surgical area. Meanwhile, John continued to drain little by little until the day of his procedure. Finally, day 8, he was taken downstairs to the center and I was in tow next to him. As we waited, the nurses fitted him to continually take his vitals and the doctor came to speak with us. He said the tube would be significantly smaller than the first tube and we would later be taught how to drain it at home in a clean environment. We looked at each other and realized we had a great duty on our hands. There are many risks, just like we experienced with his feeding tube, of infection and fall out. They kept him overnight for observation and to give him antibiotics and sufficient pain medicine to keep him comfortable throughout. Comfort…what an interesting word. I do not think John has had a day of comfort since we found out about the diagnosis. His body is trying so hard to recover but ends up fighting back at him. He has the obvious pains from the countless procedures he has undergone and when that subsides, he then feels the throbbing from his abdomen. It has been that never ending, painful cycle yet he still finds his smile from deep down and brings it out as often as he can. Day 9 was his release. We were busting at the seams waiting for signatures from several doctors and the training I needed to begin the draining from home along with the equipment. That day seemed to take longer than the 8 days prior. Finally, we got what we needed and were together, outside, loading in the car. It was so nice to be outside and driving home with my husband this time. Every time I went home every other morning to shower and quickly return, it was without John…and this time, I could look in the passenger seat to find him right there with me. It was a great feeling.
Since then, he has spent the last few days in bed. Slowly he is regaining his strength to walk and needs the help to get out of bed due to the procedure still being so tender. We have had two successful drains at the house. I look at his thinner frame and see the tubes sticking out of his body and the port jetting out of his chest are noticeably more evident. It has to be exhausting…utterly and completely exhausting. The one thing we have noticed exceedingly different is his eating. He is eating a lot more than he has been able to in the past three months. Slowly but surely he is getting cravings again and wanting to eat rather than an Ensure or accessing his feeding tube. Little celebrations…we rejoice every single one of them.
Monday is when we meet with the oncologist again to find out what steps to take next. We still do not have the results from the CT scan but we hope to have those on Monday as well. They want to get started on the chemotherapy as soon as possible. This will hopefully be the last leg in his recovery from this disease. The fluid was another bump in the road and we have made it through it just like we will this cancer…with great success and love.
We stayed in the hospital for a total of 9 days. Days 6 and 7 consisted of waiting. Since it was the weekend and Memorial Day, there were no scheduled times surgeons were working. John was scheduled for Tuesday to get the large drainage tube removed for him to be then fitted with a smaller, at home drainage tube. Tuesday then turned into Wednesday due to the backlog they had in the surgical area. Meanwhile, John continued to drain little by little until the day of his procedure. Finally, day 8, he was taken downstairs to the center and I was in tow next to him. As we waited, the nurses fitted him to continually take his vitals and the doctor came to speak with us. He said the tube would be significantly smaller than the first tube and we would later be taught how to drain it at home in a clean environment. We looked at each other and realized we had a great duty on our hands. There are many risks, just like we experienced with his feeding tube, of infection and fall out. They kept him overnight for observation and to give him antibiotics and sufficient pain medicine to keep him comfortable throughout. Comfort…what an interesting word. I do not think John has had a day of comfort since we found out about the diagnosis. His body is trying so hard to recover but ends up fighting back at him. He has the obvious pains from the countless procedures he has undergone and when that subsides, he then feels the throbbing from his abdomen. It has been that never ending, painful cycle yet he still finds his smile from deep down and brings it out as often as he can. Day 9 was his release. We were busting at the seams waiting for signatures from several doctors and the training I needed to begin the draining from home along with the equipment. That day seemed to take longer than the 8 days prior. Finally, we got what we needed and were together, outside, loading in the car. It was so nice to be outside and driving home with my husband this time. Every time I went home every other morning to shower and quickly return, it was without John…and this time, I could look in the passenger seat to find him right there with me. It was a great feeling.
Since then, he has spent the last few days in bed. Slowly he is regaining his strength to walk and needs the help to get out of bed due to the procedure still being so tender. We have had two successful drains at the house. I look at his thinner frame and see the tubes sticking out of his body and the port jetting out of his chest are noticeably more evident. It has to be exhausting…utterly and completely exhausting. The one thing we have noticed exceedingly different is his eating. He is eating a lot more than he has been able to in the past three months. Slowly but surely he is getting cravings again and wanting to eat rather than an Ensure or accessing his feeding tube. Little celebrations…we rejoice every single one of them.
Monday is when we meet with the oncologist again to find out what steps to take next. We still do not have the results from the CT scan but we hope to have those on Monday as well. They want to get started on the chemotherapy as soon as possible. This will hopefully be the last leg in his recovery from this disease. The fluid was another bump in the road and we have made it through it just like we will this cancer…with great success and love.
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