Hemoglobin is a protein in red blood cells that carries oxygen to the rest of the body…I did not know that myself…I looked it up online my nursing friends. :) John has little of this pumping through his already beaten body. Testing last week had shown his oncologist lower levels of this much needed protein he needs to continue to fight infection and maintaining control of his cancer spreading. Tomorrow we will find out if he needs a blood transfusion to help build this much needed immunity in his body. Like every week we have experienced after chemotherapy, this one has been a rough one. We believe the low count has added to the stress and hope whatever the doctors pull up tomorrow will show us the right direction to point his wellness in to make things…well…better. All we can do is hope for the best. Either way, John is exhausted. Like I have said many times, John is ready for everything to be over. Who can blame those complacent feelings? Headaches have ensued these past few days and do not seem to go away. Medicine and cloudiness fill his brain and my touch has helped half of the time…I wish it was something that would help 100% of the time. All we can do is try…try anything and everything to get some sort of comfort back into his day to day routine.
Though this week has been difficult, John’s dad was here to lift his spirits. It made our week very special to have him in our home. As many of you know, John’s dad “Big John”, as so many of us lovingly call him, has been battling his own form of cancer for the past 5 years. He had countless tumors removed from his leg and a few months ago, Big John had his leg removed. Right before he came to visit, he was fitted for his prosthetic leg but was unable to get it in time for the visit. This set back, by no means, slowed him down. His stamina and stories took John and me for a loop. We were inspired and had an absolute blast with him.
This family has seen the worst with these two men, but at the same time, the absolute best. Both, so young, have been fighting for their lives and we are all so lucky to be a part of these two journeys. A father and son, fighting cancer and both are winning. I wish all of you could see what I see when they sit next to each other. They are so wonderfully similar and every gesture and story sounds the same. Now that the two of them have lost weight, their sweet faces are identical. Even though we will be saddened by his departure tomorrow, our hearts are happier with him here.
Finally, today I went to Brandi Sarrett’s baby shower and she said something so loving, it completely overwhelmed me. We all sat watching her open presents of FSU themed beanies and bibs…giggled along with her as she realized what was missing from her registry...and played games of “guess the baby food flavor” hoping not to vomit from the smell. :) Toward the end, B was reading Denise's card aloud where she felt every single word as she shared it with the room. It was so heartfelt with the description of soon holding her son and how lucky she was to have found her new husband. She looked around the room with tears in her eyes and agreed she had found the man of her dreams, had an angel on the way, and beautiful friends to share it with. I felt my lower lip quiver and had an overwhelming feeling of comparison in the same light. I was so incredibly happy for my wonderful friend and could not love her words any more than I did in that moment. I am lucky as well. I am so lucky. I have John, the man of my dreams, to share my life…and all of you to share in this journey. Thank you so much for reading and many of you, for reminding me how lucky I am.
8.29.2010
8.21.2010
food and love...
We hit the cancer wall. We had had enough. We could not take any more talk or wrangling of treatment. We needed to get away…and a getaway is what we did. Last minute, late one night, John and I received a gift to leave everything behind to go on a cruise a week later. Revealed in the last post, John and I got the send off we really embraced and had been craving for a long time. Last Saturday, John and I made the drive to Miami the day before the cruise to not worry about the rush of the four hour drive the next morning. Wide eyed and bushy tailed, we were jubilant to begin the journey. We ate the cuisine and relaxed into our downtown Miami hotel room, ready to board our ship the next morning. The night quickly came and went, and all of a sudden…we were admiring the ship from the drive in. The mammoth beast floated before us in the most welcoming manner. Though the weather was dreary and grey, it did not seem to damper our spirits. The lines, customs, security, entrance photos, and emergency preparation seemed to fly by in a blink of an eye and we were…eating. Yes, we were on the boat a matter of what seemed like minutes and we were already eating. The “Liberty of the Seas” had not even left the Miami port and yes my friends, we were feeding our empty bellies. The groaning and growling was tamed by a buffet ranging from sandwiches, hamburgers, sea food, fruits, and foreign fare…to ridiculously colorful veggies I seemed to pile on my plate to make some sort of concoction with a mix of dressings. It all looked appetizing and every bit of it wanted to coax its way to my plate. We continued to make this our theme for the duration of the trip. I told you I would fatten John up while on the high seas and I made sure to take this mission to heart…as did he. We also made an agreement to turn off our cell phones and reconnect as husband and wife that week. There would be no discussion of cancer, doctors, illness, sadness, struggle, hurt, or anguish…only love. Food and love flowed in perfect harmony.
Days one and two were spent at sea with the majestic view from our balcony in tow. Every morning, noon and night, we made it a point to sit there and sip in the sea air and release it back into the ocean waves just as it came to us. John surprised me with a massage before porting on the third day in our first destination…St. Maarten. Just pulling into the port was breath taking as all we saw for two days straight was water. The green from the tree tops and mountains flooded our view as we welcomed the island into our field of sight. Day four we stopped in San Juan, Puerto Rico and day five we were in Labadee, Haiti. Just like St. Maarten, we walked for as long as we could in the overwhelming heat to explore and of course…eat. It had been quite some time since John had been out of bed and walking for lengthy strolls. He did beautifully. We did sit down and take plenty of breaks…per request of his wife…but decided not to attend any excursions to keep everything at our own pace. Day six was spent at sea and all we could do was look back at the week and be thankful for the time we had together on the “Liberty”. We hit the port early on the next Sunday morning and drove back home right off the port. A few short hours later, we were home. Home, sweet home. Everything about the trip was magical and the level of reconnection we experienced together cannot be described well enough to do it justice.
Returning to the swing of things was difficult. We leapt right into another week of chemotherapy. It was the very next day after returning from the trip of a lifetime that we had to continue with the grind. They gave John new nausea medicine for this fourth round and his vomiting was a little more controlled. There were only a few bouts of queasiness he had to overcome this week. Then…we got the call. Wednesday evening, before I walked out the door to run some errands as John slept, the gastro doctor called with the results of the biopsied portions of his esophagus. I came running upstairs and awoke John from his nap to then listen to the call together on speaker phone. Dr. Q continued by saying he had been trying to call us last week while we were on the cruise for the results…forgetting we were away. As he continued talking, our eyes met one another’s and that is when he said it. “…I biopsied the heck out of his esophagus and the results came back clear...” The source of the beast is gone…done…where this mess all started....John killed part of the bitch inside of him. He did remind us we were not out of the woods yet and we know there is still quite a fight left of battle. His liver and lymph nodes are still a great concern, but the source of the spreading is gone with no sign of its existence. It was the best feeling in the world to share that moment together and realize how far he has come. It is nothing short of a miracle. There is no other word to explain what is happening before me. More tears of happiness rolled down our cheeks and it was the boost of confidence he needed to finish out this week of chemotherapy strong. Celebrating each and every milestone together helps the journey seem more manageable and uplifting. We never asked for cancer…nobody ever does…but I will never ask why in damnation of it all. “Why?” should be stated or asked differently. There is a reason why we are on this journey. There is a reason why John was diagnosed with esophageal cancer. We will figure it out sooner or later, but for now, we keep pushing to clear the monster out of his body. It is an amazing feat.
That night, I personally had my break down. It was incredibly difficult to hear John only had three months to live in the beginning…then getting the news he was winning so far beyond anyone’s expectations after feeling as though we walked through the pits of hell these past five months. Emotionally, I lost it. Do you remember when you were a child? Take yourself back to when you were young and cried uncontrollably. Do you remember when you would cry so hard, you could not seem to catch your breath? Yes, that was me. I was just like a small child, who could not catch their breath, because the emotion was so overwhelming and nothing seemed to calm me down…except John. It has always been him…to make me laugh, cheer me up, take my hand, hold me close…to make it all go away. He did the same that night with the help of our stunning friend Michelle. I needed to feel those emotions to my core and release the ambiguous thoughts I had been carrying all this time. The mission was clear from the beginning but the destruction going on in my mind was a mess. My very own breakdown seemed to help clear things up a little bit and with this, the good news and my husband...clarity is looking better by the minute.
I have always explained to John he was going to beat this because I could not picture my life without him. There was never a lucid thought of being alone or a widow because I knew his vitality would overcome…and look…he is doing it. He is overcoming something many thought he would not. With the weight of the world on his shoulders...he is doing it and all I can do is watch in awe.
Days one and two were spent at sea with the majestic view from our balcony in tow. Every morning, noon and night, we made it a point to sit there and sip in the sea air and release it back into the ocean waves just as it came to us. John surprised me with a massage before porting on the third day in our first destination…St. Maarten. Just pulling into the port was breath taking as all we saw for two days straight was water. The green from the tree tops and mountains flooded our view as we welcomed the island into our field of sight. Day four we stopped in San Juan, Puerto Rico and day five we were in Labadee, Haiti. Just like St. Maarten, we walked for as long as we could in the overwhelming heat to explore and of course…eat. It had been quite some time since John had been out of bed and walking for lengthy strolls. He did beautifully. We did sit down and take plenty of breaks…per request of his wife…but decided not to attend any excursions to keep everything at our own pace. Day six was spent at sea and all we could do was look back at the week and be thankful for the time we had together on the “Liberty”. We hit the port early on the next Sunday morning and drove back home right off the port. A few short hours later, we were home. Home, sweet home. Everything about the trip was magical and the level of reconnection we experienced together cannot be described well enough to do it justice.
Returning to the swing of things was difficult. We leapt right into another week of chemotherapy. It was the very next day after returning from the trip of a lifetime that we had to continue with the grind. They gave John new nausea medicine for this fourth round and his vomiting was a little more controlled. There were only a few bouts of queasiness he had to overcome this week. Then…we got the call. Wednesday evening, before I walked out the door to run some errands as John slept, the gastro doctor called with the results of the biopsied portions of his esophagus. I came running upstairs and awoke John from his nap to then listen to the call together on speaker phone. Dr. Q continued by saying he had been trying to call us last week while we were on the cruise for the results…forgetting we were away. As he continued talking, our eyes met one another’s and that is when he said it. “…I biopsied the heck out of his esophagus and the results came back clear...” The source of the beast is gone…done…where this mess all started....John killed part of the bitch inside of him. He did remind us we were not out of the woods yet and we know there is still quite a fight left of battle. His liver and lymph nodes are still a great concern, but the source of the spreading is gone with no sign of its existence. It was the best feeling in the world to share that moment together and realize how far he has come. It is nothing short of a miracle. There is no other word to explain what is happening before me. More tears of happiness rolled down our cheeks and it was the boost of confidence he needed to finish out this week of chemotherapy strong. Celebrating each and every milestone together helps the journey seem more manageable and uplifting. We never asked for cancer…nobody ever does…but I will never ask why in damnation of it all. “Why?” should be stated or asked differently. There is a reason why we are on this journey. There is a reason why John was diagnosed with esophageal cancer. We will figure it out sooner or later, but for now, we keep pushing to clear the monster out of his body. It is an amazing feat.
That night, I personally had my break down. It was incredibly difficult to hear John only had three months to live in the beginning…then getting the news he was winning so far beyond anyone’s expectations after feeling as though we walked through the pits of hell these past five months. Emotionally, I lost it. Do you remember when you were a child? Take yourself back to when you were young and cried uncontrollably. Do you remember when you would cry so hard, you could not seem to catch your breath? Yes, that was me. I was just like a small child, who could not catch their breath, because the emotion was so overwhelming and nothing seemed to calm me down…except John. It has always been him…to make me laugh, cheer me up, take my hand, hold me close…to make it all go away. He did the same that night with the help of our stunning friend Michelle. I needed to feel those emotions to my core and release the ambiguous thoughts I had been carrying all this time. The mission was clear from the beginning but the destruction going on in my mind was a mess. My very own breakdown seemed to help clear things up a little bit and with this, the good news and my husband...clarity is looking better by the minute.
I have always explained to John he was going to beat this because I could not picture my life without him. There was never a lucid thought of being alone or a widow because I knew his vitality would overcome…and look…he is doing it. He is overcoming something many thought he would not. With the weight of the world on his shoulders...he is doing it and all I can do is watch in awe.
8.06.2010
beautiful....
Are you sitting down? Take your time…I will wait………………………………………..okay, long enough. We found out the most amazing news in the entire world today. At John’s stomach tube removal appointment I discussed in the previous blog entry, we set up another endoscopy appointment for today with the gastroenterologist. In this appointment, we were to see the progress his tumor had made and how his stomach was looking after all the treatments John had received thus far. So today came the 1:45 appointment and we made our way to the office. He was called back rather quickly and I sat with him until they took him to the surgical area. During my wait, I went to the gas station to pick up vitamin water for John since he was not allowed to eat or drink anything since the day before. I figured he might want something rather than plain water. I came back, plopped down in the waiting room for another few minutes, and was escorted soon thereafter to see him out of the procedure. “Today was fast,” I mumbled as the nurse walked me to meet John in the recovery area. “You were the last one of the day,” she explained. As I rounded the corner, I saw the gastro doc (the same one we know and love discussed in the previous entry) standing next to John’s bed. I was excited to see John, kissed his forehead and looked at the doctor with such anxiety and hope. He opened John’s file and said, “Let me give you a comparison of the before and after.” There were photos of John’s esophagus prior to treatment that showed large masses clogging the passage way to his stomach. He described his first endoscopy to us as he had to push aside those tumors to get further down the esophagus. Then, he flipped the page to the “after” photo. The photo from today. The photo that made my knees weak. It was the most beautiful photo I have ever seen in my life. It was clear. I looked up at Dr. Q with my hand over my mouth in amazement.
We could not believe it. He further stated John was not out of the woods yet, but this was beyond the progress he expected to see from treatment. Biopsies were sent from his esophagus and stomach that will more than likely show malignant results, but it is still an unbelievable amount of progress. He did find ulcers in his stomach, which he gave a prescription for, due to the amount of stress, chemotherapy, and the excessive amount of medication John is on at this time. He said these ulcers could be a large part of his current nausea so we are excited to rid of them soon. Though his esophagus is still inflamed, we are light years away from where we were 5 months ago.
As we walked to the car in the parking lot after hearing the great news, we could not even make it there without stopping, crying and holding each other for what seemed like hours. “You did it,” I kept repeating to him as we sobbed together. The entire ride home was full of elated comments and squeezing hand holds. “I never really understood why people would cry when they were happy. It never made sense to me until right now…I am so happy,” John said to me as tears streamed down his flushed cheeks. The tears did not stop until we found ourselves still holding each other on our bed at home. He really did it. He is still continuing to do it. We know this journey was not done alone as we are so thankful to have family and friends still by our sides. Again, like Dr. Q said, we are not cured or done with this fight. We still have things to battle like the rest of the cancer cells, draining his chest, and weight gain, but at least we can see great progress and that beautiful, modest light at the end of the tunnel seeming to warm our hearts a little more each day.
With this being said…John and I are going away. We are going off the grid for a week and I think we really need this break. No doctors, no appointments, no treatments, no cancer for a week straight…just John, myself and our love. We will leave for Miami tomorrow afternoon and board the Royal Caribbean cruise line on Sunday for an eastern Caribbean cruise. We will take a lot of photos and of course, I will be sure to fatten John up as much as I can these much needed 7 days away. See you all when we get back!!!!
“This is the best case scenario…95% of the original tumors are gone.”
We could not believe it. He further stated John was not out of the woods yet, but this was beyond the progress he expected to see from treatment. Biopsies were sent from his esophagus and stomach that will more than likely show malignant results, but it is still an unbelievable amount of progress. He did find ulcers in his stomach, which he gave a prescription for, due to the amount of stress, chemotherapy, and the excessive amount of medication John is on at this time. He said these ulcers could be a large part of his current nausea so we are excited to rid of them soon. Though his esophagus is still inflamed, we are light years away from where we were 5 months ago.
As we walked to the car in the parking lot after hearing the great news, we could not even make it there without stopping, crying and holding each other for what seemed like hours. “You did it,” I kept repeating to him as we sobbed together. The entire ride home was full of elated comments and squeezing hand holds. “I never really understood why people would cry when they were happy. It never made sense to me until right now…I am so happy,” John said to me as tears streamed down his flushed cheeks. The tears did not stop until we found ourselves still holding each other on our bed at home. He really did it. He is still continuing to do it. We know this journey was not done alone as we are so thankful to have family and friends still by our sides. Again, like Dr. Q said, we are not cured or done with this fight. We still have things to battle like the rest of the cancer cells, draining his chest, and weight gain, but at least we can see great progress and that beautiful, modest light at the end of the tunnel seeming to warm our hearts a little more each day.
With this being said…John and I are going away. We are going off the grid for a week and I think we really need this break. No doctors, no appointments, no treatments, no cancer for a week straight…just John, myself and our love. We will leave for Miami tomorrow afternoon and board the Royal Caribbean cruise line on Sunday for an eastern Caribbean cruise. We will take a lot of photos and of course, I will be sure to fatten John up as much as I can these much needed 7 days away. See you all when we get back!!!!
8.02.2010
patience...
I thank my wife for so many things every single day. There is so much she does for me that I cannot begin to express my gratitude. One thing I want to thank her for is her patience. The endurance and patience a person must have to go through what we have gone through is great. I am not talking about the illness or the stress of a terminal illness. I am talking only of waiting in waiting rooms. People hate waiting at the doctor’s office, dentist’s office, and especially the DMV. Imagine four or five days a week going to the DMV and waiting hours for someone else to get their license. She waits patiently in the waiting room every day as I am in the back getting shots, getting prescription refills, and getting blood tests. She doesn’t complain nor does she ever seem impatient. For this I have to thank her because just last week alone she spent over 6 hours just waiting on my many doctor’s appointments.
At the same time I am thanking her for waiting, I want to bash the doctors’ offices for wasting so much time. I have to sign in and pay my copay every time I walk in the office. Then I have to wait to be called back by the nurse for my weight and blood pressure. Then I have to wait on the doctor to get the blood results. Then I have to wait on the doctor to come into the smaller waiting room with the results and explanations. I know there are nurses who read this blog and this is no bash at you. But there has to be a better way to organize these procedures. Is there not anyone overseeing these operations? Are there any operations coordinators or efficiency liaisons who can help?
Well that is enough being negative about waiting now I can be positive about football. College and pro seasons are fast approaching and I am an annual participant in fantasy football. This year I need some help coming up with a creative team name. Right now I have a couple of ideas, one including “The Cancer Cells.” But my creative juices are not working. In the past one name was “Oh Shit! We’re married.” This name was reference to Cat and I getting married that year. Another name was “2 Male Cheerleaders.” This was to make fun of two guys in the fantasy league who were male cheerleaders in high school. If you are reading this and were a male cheerleader in high school and I have yet to make fun of you, let me know so I can. But if anybody has a creative name I could use, please let me know. I like for them to make fun of people (celebrities or friends) or use current events such as my cancer…let me know!
-John :)
At the same time I am thanking her for waiting, I want to bash the doctors’ offices for wasting so much time. I have to sign in and pay my copay every time I walk in the office. Then I have to wait to be called back by the nurse for my weight and blood pressure. Then I have to wait on the doctor to get the blood results. Then I have to wait on the doctor to come into the smaller waiting room with the results and explanations. I know there are nurses who read this blog and this is no bash at you. But there has to be a better way to organize these procedures. Is there not anyone overseeing these operations? Are there any operations coordinators or efficiency liaisons who can help?
Well that is enough being negative about waiting now I can be positive about football. College and pro seasons are fast approaching and I am an annual participant in fantasy football. This year I need some help coming up with a creative team name. Right now I have a couple of ideas, one including “The Cancer Cells.” But my creative juices are not working. In the past one name was “Oh Shit! We’re married.” This name was reference to Cat and I getting married that year. Another name was “2 Male Cheerleaders.” This was to make fun of two guys in the fantasy league who were male cheerleaders in high school. If you are reading this and were a male cheerleader in high school and I have yet to make fun of you, let me know so I can. But if anybody has a creative name I could use, please let me know. I like for them to make fun of people (celebrities or friends) or use current events such as my cancer…let me know!
-John :)
8.01.2010
another small victory...
With all the great news buzzing in my ears…nothing could stop my emotions from being anything but thrilled and utterly ecstatic. It carried into my days and nights like a thick fog that would not seem to go away…and I did not want it to. I know John felt it too because he continued to try and eat this week even though chemotherapy tried to stop him from doing so. John really put it into prospective when we discussed his eating along with his nausea. “I think my body thinks the food I am putting into my stomach is the same as the poison I am allowing in with the chemo…so it is trying to get rid of it.” It made sense…that is why he still continued to throw up this week but this third round was different because he still tried. Trying is hard when you feel so beat down. He did make the attempt even though he threw up half of what he ate but still made it a point to strive for health.
This week also came with another victory. John got his feeding tube removed. Well, maybe removed is not the right way to describe the action. "Yanking out" might be the best way to describe the confiscation. We went into the oncologist’s office bound and determined to demand this to be taken out. Low and behold, he agreed and said he could do it right then and there rather than waiting for the endoscopy the following week. He left it completely up to John and said it was his decision. After getting a little light headed from the description the gastro doctor gave him of the removal process, John still decided to go for it. I had the view of his stomach as he sat back and the feeding tube was literally ripped out of his stomach. John screamed at the top of his lungs and winced with great pain. I have never heard John yell like that before in my life and it sent chills down my spine. From there, it took him a few hours to regain his balance to go home. He kept apologizing because he could not seem to get a hold of himself to stand up and walk out. No stitches were needed as the doctor said it would close itself within 24-48 hours…and he was right. We really have always been impressed with his gastro doctor because he has always shown great care with John and they always go back and forth about the Cowboys vs. the Giants (since this doc is from New York). That day was no different. Dr. Q, as we so lovingly call him, wheeled John down in the wheel chair and helped him into the car. On our way home, we talked about how you never see doctors do anything like he showed us that day and usually nurses are the ones who take the time do to such things.
Now, we are settling into another two week break. He is still feeling the effects of chemo these past few days but is better than the ones after round one and two. I think it was the good news we received last week that has really helped out. His spirits remain high and now the feeding tube is also one less thing we have to worry about. He is so awesome and amazingly strong. Now, the draining is the next victory and soon, the cancer will be gone. It has been a long battle…but it has been worth the fight. I do not question “why” anymore and nobody should. It will be a reminder of the depths of sadness this illness can really take hold of and I cannot allow myself to feel that way. We have been dealt these cards and somehow, someway, we will look back on these events and say, "Wow." Like I said…he is kind of awesome like that.
This week also came with another victory. John got his feeding tube removed. Well, maybe removed is not the right way to describe the action. "Yanking out" might be the best way to describe the confiscation. We went into the oncologist’s office bound and determined to demand this to be taken out. Low and behold, he agreed and said he could do it right then and there rather than waiting for the endoscopy the following week. He left it completely up to John and said it was his decision. After getting a little light headed from the description the gastro doctor gave him of the removal process, John still decided to go for it. I had the view of his stomach as he sat back and the feeding tube was literally ripped out of his stomach. John screamed at the top of his lungs and winced with great pain. I have never heard John yell like that before in my life and it sent chills down my spine. From there, it took him a few hours to regain his balance to go home. He kept apologizing because he could not seem to get a hold of himself to stand up and walk out. No stitches were needed as the doctor said it would close itself within 24-48 hours…and he was right. We really have always been impressed with his gastro doctor because he has always shown great care with John and they always go back and forth about the Cowboys vs. the Giants (since this doc is from New York). That day was no different. Dr. Q, as we so lovingly call him, wheeled John down in the wheel chair and helped him into the car. On our way home, we talked about how you never see doctors do anything like he showed us that day and usually nurses are the ones who take the time do to such things.
Now, we are settling into another two week break. He is still feeling the effects of chemo these past few days but is better than the ones after round one and two. I think it was the good news we received last week that has really helped out. His spirits remain high and now the feeding tube is also one less thing we have to worry about. He is so awesome and amazingly strong. Now, the draining is the next victory and soon, the cancer will be gone. It has been a long battle…but it has been worth the fight. I do not question “why” anymore and nobody should. It will be a reminder of the depths of sadness this illness can really take hold of and I cannot allow myself to feel that way. We have been dealt these cards and somehow, someway, we will look back on these events and say, "Wow." Like I said…he is kind of awesome like that.
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