Dear Friends & Family,
Please copy and paste the website listed below to view our holiday card. Below the card is a rather long message if you choose to read that tells a little bit about the non-cancer side to our lives. ;-) We pray you all have a safe and fabulous holiday! Oh, and I know the music in the background is "Have Yourself a Merry Little Christmas," but it's instrumental, so if Christmas is not what you celebrate, replace it with Hanukkah, winter, etc. Happy Holidays! (Feel free to share this card with anyone else you know that is praying for our family as we are so very appreciative every single day!)
Love, The Springfields
http://springfield2011.cocodot.com/
Friday, December 23, 2011
Tuesday, December 6, 2011
Perhaps, Possibly, Potentially...
With three major surgeries, five post-surgical rounds of chemotherapy, and one PET/CT scan completed so far this year, we have learned that the only remaining cancer has set up shop in my right adrenal gland. We are astonished at just how far we have come and how little disease is still present; however, the fact that some of Trudy’s offspring still remains means that my body has developed a tolerance to the chemo or the cancer has mutated enough where the current drugs have stopped being effective. There are a few other chemo drugs that we haven’t tried yet, so it is time to mix up a new cocktail and begin another three months of treatment.
Extremely optimist that this will be the final battle before being able to use the word “remission” and celebrate being a cancer survivor, our hopes are at an all time high. Of course starting a new treatment plan means that there will be new side effects and challenges to deal with. Given what I have already experienced, how much different or worse could they be compared to the previous rounds? One infusion down and things were happening as expected. After just four days, the chemo has let go of the choke-hold it had on me and I was back in the gym. Every set was ten times harder than it should have been and workouts were short and anything but intense. Not quite two weeks into the new plan and my hair was falling out in chunks. My doctor told me this might happen, but he didn’t mention the crazy scalp pain. I could barely dry my head after a shower and the pain would often times wake me up in the night as I shifted in my sleep. The first time looking in the mirror as a bald man was a bit strange and I wasn’t quite sure what to make of my new look, but it only took a day or two to get used to it and I actually started to like it a bit.
Unfortunately, saving a few dollars and not having to get a haircut every other week was the only positive thing this chemo had going for it. Somewhere around the third week I started developing these mouth sores. I am not talking about the little tiny canker sores that you may have experienced at some point. These things were nearly dime-sized mouth ulcers that made eating, drinking, and brushing nearly impossible. The fun didn’t stop there. Next up was the joint pain and freakishly-weird swelling. It started out as just an inconvenience, but quickly started to intensify. It wasn’t long before I was incapable of doing anything. Simple activities like lifting a glass to my mouth to drink or even pushing the buttons on a remote almost became too much to handle. Although I never actually did, I considered going to the bathroom in my pants several times because standing up and walking to the bathroom was just far too painful. I know it sounds funny that a 33 year old man would be having this inner dialogue, but that was my reality. It felt like every bone in my body had been shattered as if I was run over by a steam roller.
Chemo is rough and making any real gains is difficult, but I wouldn’t say it was two steps forward and three steps back. It was more like nine steps forward and 10 steps back. Loosing 10% of your strength and energy isn’t the end of the world and you may not even notice that it is gone at first, but loosing 10% every other week is quite different. By the time I got to that fifth cycle and my energy levels had been cut in half, I really started to feel the cumulative effect. All-in-all I have had nine consecutive cycles of treatment spanning nearly 5 months, which led to something called chemo toxicity. My body was being completely dominated by the repetitive injections of poison and wasn’t recovering in between treatments. At first it would take me about three or four days to start feeling decent again after treatments, but with each successive infusion it was taking longer and longer until I just wasn’t able to bounce back at all before the next round.
I would love to tell you that it was all worth it and the cancer was gone, but I don’t want to lie to you. The PET/CT scan results are back and we are shocked. I wasn’t fully expecting the doctor to tell me that the cancer was completely gone, but I certainly wasn’t prepared to hear what he had to say. Not only did the tumor in the adrenal gland increase significantly in size, but there were now two lesions in the liver and another five in my lungs. To go through all of that just to learn that the chemo was completely ineffective was devastating. At this point we believe we have exhausted all FDA approved treatments and finding a clinical trial was our only option.
Way back in the beginning when the original biopsy was performed, there was evidence that I had a mutation within my cancer cells, but we didn’t really do anything with that information because things were progressing as good as they could those first couple of months. Now that things are heading in the wrong direction, it is time to re-examine those original findings. If these current tumors are indeed from Trudy, and if I still have that mutation, there might actually be one more chemo possibility. In order to confirm this, another biopsy must be completed. As it turns out, obtaining the sample wasn’t going to be as simple as anticipated. With the needle, they needed to take a pathway through my lung to get to the adrenal gland. I was originally supposed to be under anesthesia, but the doctors needed me to be completely coherent so that I could control my breathing as they fed this sword through my lung. Remaining completely still and holding your breath while this little metal hand pinches off chunks of your organs is not a pleasurable experience. The procedure took about an hour and within a few days it was confirmed that I did have that special mutation.
Before jumping back into another series of chemotherapy treatments, we wanted to pick the brain of one of the oncologist at MD Anderson. The wifey and I are off to Texas. Our local oncologist has been amazing through this entire process and we trust him wholeheartedly; however, another brilliant mind couldn’t hurt. We were facing a few different options: the new chemo, a clinical trial, and potentially a procedure called RFA if things were stable. We had no idea which direction to head and at this point, the wrong decision could be catastrophic. We were so hopeful that this new doctor would feel strongly one way or another and would be able to confidently give us our new plan of attack. The consultation went on for some time and the doctor was quite thorough. She ordered a whole new set of scans and labs to be done after our meeting with the assumption that nothing had changed since the previous scan just a few weeks earlier. It seems as if we are going to get exactly what we were hoping for, direction. We left Texas feeling pretty good about the course of treatment and were so relieved to have gotten the news we did. Just a few days later, though, we received a call from Texas and everything had changed. You guessed it! This was not good news at all. As it turns out, within those three weeks between scans, my lesions had nearly doubled in size and the cancer was acting quite aggressively. A new chemo regime was the only option at this point. We are just hoping that it can stop the rapid growth of the cancer and prolong life for awhile. My cancer is now incurable. Being told that it is only a matter of time and that chemo and all its wonderful effects every other week is the very best it is ever going to be for me wasn’t exactly what we wanted to hear, but we did ask for brutal honesty.
I know that our Lord has chosen me for this journey for a very important reason. I am still a little uncertain as what it is, but that’s where my faith comes in as well as knowing I have been given this opportunity to touch the lives of others and hopefully inspire them is amazing. It’s not always easy to find the good in bad situations, but if you look hard enough, I promise you it’s there.
don’t give up…DON’T EVER GIVE UP!
[This blog post dates back to the post-surgery events occurring in February 2011 through our Texas MD Anderson visit in August 2011. My hope is for the next post to bring us to the present time. Thank you always to those who continue to pray and support me on this journey.]
Extremely optimist that this will be the final battle before being able to use the word “remission” and celebrate being a cancer survivor, our hopes are at an all time high. Of course starting a new treatment plan means that there will be new side effects and challenges to deal with. Given what I have already experienced, how much different or worse could they be compared to the previous rounds? One infusion down and things were happening as expected. After just four days, the chemo has let go of the choke-hold it had on me and I was back in the gym. Every set was ten times harder than it should have been and workouts were short and anything but intense. Not quite two weeks into the new plan and my hair was falling out in chunks. My doctor told me this might happen, but he didn’t mention the crazy scalp pain. I could barely dry my head after a shower and the pain would often times wake me up in the night as I shifted in my sleep. The first time looking in the mirror as a bald man was a bit strange and I wasn’t quite sure what to make of my new look, but it only took a day or two to get used to it and I actually started to like it a bit.
Unfortunately, saving a few dollars and not having to get a haircut every other week was the only positive thing this chemo had going for it. Somewhere around the third week I started developing these mouth sores. I am not talking about the little tiny canker sores that you may have experienced at some point. These things were nearly dime-sized mouth ulcers that made eating, drinking, and brushing nearly impossible. The fun didn’t stop there. Next up was the joint pain and freakishly-weird swelling. It started out as just an inconvenience, but quickly started to intensify. It wasn’t long before I was incapable of doing anything. Simple activities like lifting a glass to my mouth to drink or even pushing the buttons on a remote almost became too much to handle. Although I never actually did, I considered going to the bathroom in my pants several times because standing up and walking to the bathroom was just far too painful. I know it sounds funny that a 33 year old man would be having this inner dialogue, but that was my reality. It felt like every bone in my body had been shattered as if I was run over by a steam roller.
Chemo is rough and making any real gains is difficult, but I wouldn’t say it was two steps forward and three steps back. It was more like nine steps forward and 10 steps back. Loosing 10% of your strength and energy isn’t the end of the world and you may not even notice that it is gone at first, but loosing 10% every other week is quite different. By the time I got to that fifth cycle and my energy levels had been cut in half, I really started to feel the cumulative effect. All-in-all I have had nine consecutive cycles of treatment spanning nearly 5 months, which led to something called chemo toxicity. My body was being completely dominated by the repetitive injections of poison and wasn’t recovering in between treatments. At first it would take me about three or four days to start feeling decent again after treatments, but with each successive infusion it was taking longer and longer until I just wasn’t able to bounce back at all before the next round.
I would love to tell you that it was all worth it and the cancer was gone, but I don’t want to lie to you. The PET/CT scan results are back and we are shocked. I wasn’t fully expecting the doctor to tell me that the cancer was completely gone, but I certainly wasn’t prepared to hear what he had to say. Not only did the tumor in the adrenal gland increase significantly in size, but there were now two lesions in the liver and another five in my lungs. To go through all of that just to learn that the chemo was completely ineffective was devastating. At this point we believe we have exhausted all FDA approved treatments and finding a clinical trial was our only option.
Way back in the beginning when the original biopsy was performed, there was evidence that I had a mutation within my cancer cells, but we didn’t really do anything with that information because things were progressing as good as they could those first couple of months. Now that things are heading in the wrong direction, it is time to re-examine those original findings. If these current tumors are indeed from Trudy, and if I still have that mutation, there might actually be one more chemo possibility. In order to confirm this, another biopsy must be completed. As it turns out, obtaining the sample wasn’t going to be as simple as anticipated. With the needle, they needed to take a pathway through my lung to get to the adrenal gland. I was originally supposed to be under anesthesia, but the doctors needed me to be completely coherent so that I could control my breathing as they fed this sword through my lung. Remaining completely still and holding your breath while this little metal hand pinches off chunks of your organs is not a pleasurable experience. The procedure took about an hour and within a few days it was confirmed that I did have that special mutation.
Before jumping back into another series of chemotherapy treatments, we wanted to pick the brain of one of the oncologist at MD Anderson. The wifey and I are off to Texas. Our local oncologist has been amazing through this entire process and we trust him wholeheartedly; however, another brilliant mind couldn’t hurt. We were facing a few different options: the new chemo, a clinical trial, and potentially a procedure called RFA if things were stable. We had no idea which direction to head and at this point, the wrong decision could be catastrophic. We were so hopeful that this new doctor would feel strongly one way or another and would be able to confidently give us our new plan of attack. The consultation went on for some time and the doctor was quite thorough. She ordered a whole new set of scans and labs to be done after our meeting with the assumption that nothing had changed since the previous scan just a few weeks earlier. It seems as if we are going to get exactly what we were hoping for, direction. We left Texas feeling pretty good about the course of treatment and were so relieved to have gotten the news we did. Just a few days later, though, we received a call from Texas and everything had changed. You guessed it! This was not good news at all. As it turns out, within those three weeks between scans, my lesions had nearly doubled in size and the cancer was acting quite aggressively. A new chemo regime was the only option at this point. We are just hoping that it can stop the rapid growth of the cancer and prolong life for awhile. My cancer is now incurable. Being told that it is only a matter of time and that chemo and all its wonderful effects every other week is the very best it is ever going to be for me wasn’t exactly what we wanted to hear, but we did ask for brutal honesty.
I know that our Lord has chosen me for this journey for a very important reason. I am still a little uncertain as what it is, but that’s where my faith comes in as well as knowing I have been given this opportunity to touch the lives of others and hopefully inspire them is amazing. It’s not always easy to find the good in bad situations, but if you look hard enough, I promise you it’s there.
don’t give up…DON’T EVER GIVE UP!
[This blog post dates back to the post-surgery events occurring in February 2011 through our Texas MD Anderson visit in August 2011. My hope is for the next post to bring us to the present time. Thank you always to those who continue to pray and support me on this journey.]
Tuesday, June 14, 2011
GOING HOME
The day finally arrived, time to pack up and head home for the first time in a month. I was so eager to get out of the hospital and thrilled that the walls were now just walls and no longer moving around as if there were snakes under the paint. I still had a ton of healing to do and my nutrition requirements were still extremely high. The nice doctors even allowed me to take some of my JP drains home with me, not as souvenirs, but still functioning and coming out of my abdomen. I mentioned in one of my earlier posts just how bumpy and beat up the roads are in Michigan. Driving home with fresh incisions and all kinds of internal and external stitches made the trip from Ann Arbor to Grand Rapids very unpleasant. I remember being so emotional as we were leaving the University of Michigan. I was so excited to be getting out of my “medical prison,” but once we pulled away from the hospital, my excitement immediately turned into fear. I think knowing there wasn’t medical professionals available at the push of a button scared me more than expected. Something about this whole experience has turned me into quite the crier.
Once arriving home, I headed straight for bed and stayed there for several days before trying to move. It was great to be near family, but for a while I wondered if leaving the hospital was a good idea. My body was so weak and I was in constant pain. Between the crazy surgery, removing a large portion of my abdominal muscles, and lying around in a hospital bed for a month, I developed chronic back pain. I needed to rest and relax, but I couldn’t ever find a comfortable position. I literally couldn’t sit or lay in any one position for more than 15 minutes without feeling like a ninja was stabbing a sword into my back. The imbalance that was created in my torso caused my spine to be pulled and contorted in such an awkward way. I thought the surgical pain was going to be the worst part of it, but I was wrong, it was absolutely my back. Just to add one more thing to the mix, I had a ton of internal gas bubbles throughout my back and stomach that I could actually feel moving around. It took awhile before all the gas was gone but each time one of those things would pop it felt great.
My fearful mind was paralyzing me when I first got home. I was so scared to move. I was so nervous of setbacks. Looking ahead, it seemed like my recovery was going to take years. My best friends were scheduled to come up one after the other right away to help in any way they could, but mostly for moral support. I strongly considered having my wife tell them to cancel their trips because I just wasn’t ready. For some reason I believed I needed to entertain and play host. I am so grateful that she didn’t ask them to stay home and that they were able to spend some time with me. We didn’t really do anything other than watch TV and talk, but it was so important to me that they came. Just having them there, encouraging me, and helping me get my recovery off to a good start while taking my mind off the pain, the fears, and the cancer was a Godsend. There are many times it would have been so easy to start having negative thoughts and start letting the cancer get the best of me. My friends did exactly what I needed them to do, and that was keeping me positive. It has never been easy for me to ask for help, but this experience has made me realize that I can’t do everything alone. If you ever find yourself in a time of need, I encourage you to lean on those who are closest to you.
About two weeks after being discharged, I had to return to Ann Arbor to have the remaining stitches and JP drains removed. The stitch removal was nothing, but the JP removal was another thing. Given that I had these drains in for quite awhile, my body started forming scar tissue around the drain sites. I had a couple of the drains removed in the hospital, but don’t really remember much about the procedure. After having the remaining two drains out, I realized it wasn’t really a procedure at all. The doctor first looked me over, then grabbed on to one of the tubes and said, “Are you ready?” Am I ready, what do you mean, aren’t you going to numb the area or anything first? Nope, she just yanked those suckers out on the count of three while I had a white knuckle grip on the exam table. The pain was quite intense, but over in a few seconds. That was a huge moral boost and almost instantly lifted my spirits.
About 4 weeks after surgery, it was time to meet with the oncologist to discuss the next round of chemotherapy. The doctor took one look at me and never even discussed the chemo. I don’t blame him though, I did look pretty bad. He just confirmed that I still had a pulse and told me to come back in about a month. So, four weeks later I return to his office and we planned out the next series of treatments. We agreed to a half and half type regimen where I would come to the cancer pavilion for a few hours to get some of the meds infused and then would be sent home to take some additional chemo pills daily. Well, this plan only lasted about five days. The pills caused daily heart spasms, which got worse with each day. We concluded this initial plan wasn’t going to work after a mad dash via ambulance to the ER yet again and chose to go back to the initial chemo regimen from last summer. Even though we knew I was still going to have Dumbo do a few jigs on my chest each session, being admitted into the hospital for a couple of days and having immediate medical attention seemed to be our best bet. This way I only had to worry about heart spasms for a few days instead of everyday for two and a half months.
The three months of treatment went just as expected. The vasospasms occurred with every treatment, but the nurses were amazing and were able to keep them relatively under control. I would feel pretty crummy for about a week, but then would have a fairly descent week to recover. I took advantage of these “good weeks” and started back to the gym. I was instructed by my surgeons not to lift anything over 20lbs due to the fear of a hernia, but it was still great getting back into the gym again. Honestly, I wasn’t really able to lift more than 20 pounds anyways, so their restrictions didn’t slow me down at all. The most amazing thing about this was the fact that I could start strengthening my back again. The chronic back pain of nearly 4 months was finally starting to vanish and it was a tremendous relief. My ego was slightly bruised watching 80 year old women lifting more weight than me, but I was so grateful to feel alive again that I didn’t let it get me down.
I know our merciful Lord has been with me on this entire journey thusfar, and I feel as if He should have been the one with the chronic back pain from carrying me during this time in my life. “Footprints” comes to mind when I look back on where I have been and compare it to where I am now. There was definitely only one set of prints in the sand and I know they were His.
Here we are in the middle of May and I feel better than I have felt in over a year. My latest scan results showed that there is some cancer affecting my right adrenal gland, but all the original cancer in my liver, lungs, pancreas, gall bladder, rectum, and lymph nodes seems to be gone. If that isn’t an amazing blessing, than I don’t know what is. To think that last June I was told there was a chance that I might not be around for Christmas is crazy to me. I still have a few battles left to fight with the new upcoming chemo and additional surgeries, but I have come miles upon miles and feel like I just have a few blocks to go until I can rejoice as a cancer survivor and honor our God for healing me.
I have so much to be thankful for and I am more positive than ever, but the truth is that I still really struggle with a few things. As much as we focus on the good, it is impossible at times to keep your mind from going places you don’t want it to. I truly believe that I will beat this cancer and will live a long happy life with my wife, my son, and hopefully another beautiful child to come; however I can’t control my mind from wondering about dying or wondering if today is going to be the day I am told the cancer is back and inoperable. My wife and child are my whole world and I just can’t imagine not being around for them. I know that I will be in a better place and my sadness will no longer exist if I die, but I will be leaving them to carry the sadness and pain on their hearts. I just don’t know how one can let go of their loved one’s hand for the very last time knowing their spirit is gone. I don’t know how one can return home to a house where everything reminds them of the one they just lost. I don’t know how you go out into the world where every song, movie, or meal stirs up a memory. I don’t know how my wife will tell Hudson that daddy isn’t going to be coming home. How do you say good-bye? I cry every single day when I am alone thinking about this. The tears aren’t for me, but rather for them. I can tell you that the physical strains of what I have gone through don’t even compare to the mental challenges.
I can make you all a promise, though. I will fight this thing with every ounce of my being and will never concede. “Cancer can take away all my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul.” Jimmy Valvano
don’t give up…DON’T EVER GIVE UP
Once arriving home, I headed straight for bed and stayed there for several days before trying to move. It was great to be near family, but for a while I wondered if leaving the hospital was a good idea. My body was so weak and I was in constant pain. Between the crazy surgery, removing a large portion of my abdominal muscles, and lying around in a hospital bed for a month, I developed chronic back pain. I needed to rest and relax, but I couldn’t ever find a comfortable position. I literally couldn’t sit or lay in any one position for more than 15 minutes without feeling like a ninja was stabbing a sword into my back. The imbalance that was created in my torso caused my spine to be pulled and contorted in such an awkward way. I thought the surgical pain was going to be the worst part of it, but I was wrong, it was absolutely my back. Just to add one more thing to the mix, I had a ton of internal gas bubbles throughout my back and stomach that I could actually feel moving around. It took awhile before all the gas was gone but each time one of those things would pop it felt great.
My fearful mind was paralyzing me when I first got home. I was so scared to move. I was so nervous of setbacks. Looking ahead, it seemed like my recovery was going to take years. My best friends were scheduled to come up one after the other right away to help in any way they could, but mostly for moral support. I strongly considered having my wife tell them to cancel their trips because I just wasn’t ready. For some reason I believed I needed to entertain and play host. I am so grateful that she didn’t ask them to stay home and that they were able to spend some time with me. We didn’t really do anything other than watch TV and talk, but it was so important to me that they came. Just having them there, encouraging me, and helping me get my recovery off to a good start while taking my mind off the pain, the fears, and the cancer was a Godsend. There are many times it would have been so easy to start having negative thoughts and start letting the cancer get the best of me. My friends did exactly what I needed them to do, and that was keeping me positive. It has never been easy for me to ask for help, but this experience has made me realize that I can’t do everything alone. If you ever find yourself in a time of need, I encourage you to lean on those who are closest to you.
About two weeks after being discharged, I had to return to Ann Arbor to have the remaining stitches and JP drains removed. The stitch removal was nothing, but the JP removal was another thing. Given that I had these drains in for quite awhile, my body started forming scar tissue around the drain sites. I had a couple of the drains removed in the hospital, but don’t really remember much about the procedure. After having the remaining two drains out, I realized it wasn’t really a procedure at all. The doctor first looked me over, then grabbed on to one of the tubes and said, “Are you ready?” Am I ready, what do you mean, aren’t you going to numb the area or anything first? Nope, she just yanked those suckers out on the count of three while I had a white knuckle grip on the exam table. The pain was quite intense, but over in a few seconds. That was a huge moral boost and almost instantly lifted my spirits.
About 4 weeks after surgery, it was time to meet with the oncologist to discuss the next round of chemotherapy. The doctor took one look at me and never even discussed the chemo. I don’t blame him though, I did look pretty bad. He just confirmed that I still had a pulse and told me to come back in about a month. So, four weeks later I return to his office and we planned out the next series of treatments. We agreed to a half and half type regimen where I would come to the cancer pavilion for a few hours to get some of the meds infused and then would be sent home to take some additional chemo pills daily. Well, this plan only lasted about five days. The pills caused daily heart spasms, which got worse with each day. We concluded this initial plan wasn’t going to work after a mad dash via ambulance to the ER yet again and chose to go back to the initial chemo regimen from last summer. Even though we knew I was still going to have Dumbo do a few jigs on my chest each session, being admitted into the hospital for a couple of days and having immediate medical attention seemed to be our best bet. This way I only had to worry about heart spasms for a few days instead of everyday for two and a half months.
The three months of treatment went just as expected. The vasospasms occurred with every treatment, but the nurses were amazing and were able to keep them relatively under control. I would feel pretty crummy for about a week, but then would have a fairly descent week to recover. I took advantage of these “good weeks” and started back to the gym. I was instructed by my surgeons not to lift anything over 20lbs due to the fear of a hernia, but it was still great getting back into the gym again. Honestly, I wasn’t really able to lift more than 20 pounds anyways, so their restrictions didn’t slow me down at all. The most amazing thing about this was the fact that I could start strengthening my back again. The chronic back pain of nearly 4 months was finally starting to vanish and it was a tremendous relief. My ego was slightly bruised watching 80 year old women lifting more weight than me, but I was so grateful to feel alive again that I didn’t let it get me down.
I know our merciful Lord has been with me on this entire journey thusfar, and I feel as if He should have been the one with the chronic back pain from carrying me during this time in my life. “Footprints” comes to mind when I look back on where I have been and compare it to where I am now. There was definitely only one set of prints in the sand and I know they were His.
Here we are in the middle of May and I feel better than I have felt in over a year. My latest scan results showed that there is some cancer affecting my right adrenal gland, but all the original cancer in my liver, lungs, pancreas, gall bladder, rectum, and lymph nodes seems to be gone. If that isn’t an amazing blessing, than I don’t know what is. To think that last June I was told there was a chance that I might not be around for Christmas is crazy to me. I still have a few battles left to fight with the new upcoming chemo and additional surgeries, but I have come miles upon miles and feel like I just have a few blocks to go until I can rejoice as a cancer survivor and honor our God for healing me.
I have so much to be thankful for and I am more positive than ever, but the truth is that I still really struggle with a few things. As much as we focus on the good, it is impossible at times to keep your mind from going places you don’t want it to. I truly believe that I will beat this cancer and will live a long happy life with my wife, my son, and hopefully another beautiful child to come; however I can’t control my mind from wondering about dying or wondering if today is going to be the day I am told the cancer is back and inoperable. My wife and child are my whole world and I just can’t imagine not being around for them. I know that I will be in a better place and my sadness will no longer exist if I die, but I will be leaving them to carry the sadness and pain on their hearts. I just don’t know how one can let go of their loved one’s hand for the very last time knowing their spirit is gone. I don’t know how one can return home to a house where everything reminds them of the one they just lost. I don’t know how you go out into the world where every song, movie, or meal stirs up a memory. I don’t know how my wife will tell Hudson that daddy isn’t going to be coming home. How do you say good-bye? I cry every single day when I am alone thinking about this. The tears aren’t for me, but rather for them. I can tell you that the physical strains of what I have gone through don’t even compare to the mental challenges.
I can make you all a promise, though. I will fight this thing with every ounce of my being and will never concede. “Cancer can take away all my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul.” Jimmy Valvano
don’t give up…DON’T EVER GIVE UP
Friday, April 29, 2011
The Surgery
I feel I was chosen by God for this, to endure a magnificent feat and spread His word along the way! [Matthew 22:14 - For many are called, but few are chosen.]
As I move forward from what I believed to be the most critical of the all the phases of treatments I try to embrace and welcome the current series of chemotherapy infusions that I am receiving with open arms. The critical phase that I am referring is, of course, the surgery. Do you ever find yourself playing mind games in an attempt to alter reality or try to envision an upcoming event to be so horrible that when the moment actually presents itself, it doesn’t seem all that bad? Well that is exactly what I did preparing for my trip to Ann Arbor for my own personal dissection. I had every emotion you could imagine blustering through my head like a whirlwind. The anxiety, the uncertainty, and the fear continued to grow exponentially leading up to the morning of December 10th and started taking control of my thoughts, and essentially my days. I was fortunate enough to find that inner peace and temporary sense of tranquility as I awoke that Friday morning. I thought I was mentally prepared for all that was about to happen, but the truth is, I wasn’t--not even close. Maybe it was just because I hadn’t really slept in weeks and it was 5:30 in the morning, but all the events leading up to the moment that the anesthesiologist made me go sleepy seemed so surreal as if I was having an out-of-body experience. My last memory before being sent off to dreamland was the operating room itself. Not because it was the last thing I saw, but because of how enormous it was. There were so many lights, computers, life support machines, and people for that matter. Here I was lying on a table with nothing more than the equivalent of a large paper towel covering me, about to have a major surgery and there is a room full of people carrying on about their business like it was no big deal at all. I know they do this several times a day, so in a strange way their demeanor helped calm my nerves.
The anesthesia is injected, Errick is off in space somewhere, and the surgeons begin slicing. I don’t feel bad for being underprepared and for not knowing exactly how things were going to go. As it turns out, the doctors discovered quite a surprise themselves once they had me filleted open like the fresh catch of the day at some seafood restaurant. The cancer was worse than anticipated and was affecting many other structures than those originally determined to be in danger. 15 hours later and well into the wee hours of the morning when it was all said and done, they left me with just a third of my pancreas, a sliver of liver (actually about half), no more gall bladder, bye-bye rectum, they confiscated eleven lymph nodes, and let’s not forget that huge chunk of my abdominal wall that was removed and redirected as an internal patch. The surgeons were all amazing and I was returned to my family breathing and with a heartbeat. As you may have expected, that result was not a guarantee. Based on the amount of innards that they removed, you may think the remaining organs would be bouncing around like a bunch of bees in a mason jar, but you would be wrong. I couldn’t believe how tight my entire abdomen was after surgery. And as a parting gift from the OR, I received a nice dinner plate sized bed sore on my lower back just above my rump.
I don’t remember saying this; however, I’m told my very first words when I returned from la-la land were “Hudson, I woke up!”
My amazing and loving wife’s first comment to me was, “You went in my husband, and came out my hero!”
The anticipated 7-10 days of hospital recovery was grossly underestimated and my dreams of spending Christmas at home with my family did not happen. A few days after surgery, the recovery took a turn for the worse. Just for a bit of imagery, picture a football. The laces of the ball would represent the stapled-shut incision that begins at my sternum and runs vertically down a few inches below my belly button, while the smooth leather part would represent the rest of my torso. Now try imagining what would happen if you started pumping air into the already inflated ball and didn’t stop. The football would start to split in half at the laces until you could see the inside of the ball. Well as unpleasant as that sounds, that is exactly what was happening to my abdomen. Due to the excessive internal fluid production and the fact that my bowels were completely frozen and expanding with every bite of food or sip of water, my stomach was literally ripping apart at the seams. Needless to say, this wasn’t a good thing so I was whisked away for my second visit to the OR. All the internal stitches and initial patch-work was comprised due to the fluid so they had to re-do and double up on the pigskin (the patch material) and had to add a significant number of additional stitches to hopefully keep my insides from trying to escape again. In an attempt to prevent a replay, they inserted five JP drains into various areas of my abdomen. On one end of the JP drain, the part that remains inside the abdominal cavity was a long flat rectangular rubbery piece with a bunch of holes in it to draw the fluid, while the other end, which remains outside the body, is a large suction bulb about the size of a softball. Both ends are attached together by rubber tubing approximately the diameter of a standard pencil. Now I have about a thousand IVs, a ton of heart monitor wires, an epidural in my spine, and a maze of fish tank tubing flowing out of me that are anchored down by bulbs full of juice. Not a pretty picture.
With the exception of what I have been told and a few memories I wish not to remember, the majority of my first three weeks in the hospital is a complete blur to me. That’s right, I said first three weeks. There would be yet another 10 fun filled days, making my total vacation 31 days in total. There were definitely some big victories including two bits of great news while I was taking up residence at U of M. I had been so scared that this disease was genetic and that I could have passed this on to my beautiful son, so we decided to have some genetic testing done. The test results proved that my cancer had seemingly no genetic components and that Hudson shouldn’t have an increased risk of being diagnosed with this horrible disease later in life. What a huge relief! Unfortunately, he will still have to get routine testing starting 10 years before my diagnosis, so Happy 21st Hudson, have a beer and a colonoscopy! Additionally the pathology report showed that the surgeons were able to accomplish their goals and that negative margins were achieved.
Each passing day seemed to be different from the one before. My emotions and energy levels were up and down. With each step forward, there seemed to be a step back. This was very discouraging for me. I was so exhausted all the time and I was unable to get any quality sleep. The doctors experimented with a few different things in an attempt to help me get some rest, but they were unsuccessful for the most part. I must have had a bad reaction to the meds one night because I woke up believing I was a blue alien living on a spoon. I honestly thought that after all I had been through, my body just wasn’t strong enough to carry on and I was going to die. That was a really strange morning.
One doctor described my situation like this: my body was literally acting as if it was running a marathon everyday and that my nutrition and protein needs were outrageous and hard to fulfill. It seemed as if they were trying to force feed me food and protein supplements because that is something that I desperately needed. I was labeled as extremely malnourished. My body was essentially eating itself to keep up. During my stay, I had lost nearly 50 pounds. I was receiving a significant amount of intravenous nutrition, but those bags had such a high amount of glucose in them they were causing my blood sugar to sky rocket leaving me extremely dizzy and lightheaded requiring multiple insulin shots daily. Thankfully that resolved once the nutrition IVs were discontinued and fears of being permanently diabetic from the pancreas dissection were calmed.
A few days after Christmas the decision to remove some of the JP drains and my catheter was made. I was so excited because I believed that this was a huge step and that I could be released to go home to ring in the New Year with my loved ones very soon. One of the problems with having a catheter in for as long as I did is the likelihood of getting a lazy bladder. Well just as expected, my bladder had gone into hibernation. This meant that all the little muscles used to urinate weren’t functioning correctly so I could not empty my bladder when using the restroom; however, a significant amount of fluid came gushing out of me during one of my attempts. Where was this coming from? Well let me tell you. There was still a tremendous amount of fluid being produced and my abdomen was at maximum capacity creating a ton of internal pressure, so when I stood up to use the facilities, the fluid I noticed dripping into the toilet was all that excess juice being squeezed out of me. Every place there was an opening in the skin, there was fluid draining out. My stomach was like a big water balloon that had several holes poked into it. Clearly this wasn’t supposed to be happening so yet another trip to the OR was required for the third time. The fluid compromised the internal patching after the first surgery, hence the second surgery, so we were extremely concerned that could be happening again. Fortunately there wasn’t any real damage this time and they were able to insert another drain and suck out the fluid to rectify the problem.
The epidural I first received for my initial surgery didn’t seem to provide much relief, so it was removed and oral meds were tried. Well the experiment with the oral meds seemed to be a bust, so as a last resort, they placed a second epidural which actually seemed to work great. A day or two after that third surgery, it was time to remove the new epidural and switch back to oral pain meds. There were two major problems with this. One, the narcotics created constipation which was extremely painful given the fact that my digestive track and bowels had just been carved up. Two, they weren’t working. The doctors initially thought the dosages just weren’t right so they increased those, but as a result it was binding me up more and more. After a day or two of popping pain meds like tic tacs without any relief, I decided to play doctor for a few minutes and concluded that the constipation pain was worse than the surgical pain so I stopped taking the narcotics cold turkey. Looking back on the situation I shouldn’t have taken matters into my own hands and I should have tapered down on the drugs rather than stopping abruptly. In the following days after my executive decision, I started feeling really weird and the walls seemed to be closing in on me. I was going bananas and didn’t know why. It turns out that I was actually having drug withdrawals. It seemed as if I was losing my mind and the only thing that was going to help was time.
I can’t imagine what my wife was thinking and feeling as she saw me dealing with all these challenges, but I do know how amazing she was. The truth of matter is, I was really unpleasant and downright mean to her on several occasions. My actions and words were unintentional, but the pain and frustrations were pouring out of me. Regardless of why I was lashing out at times, she stood by my side the entire time and supported me unconditionally. I can’t thank her enough for loving me so deeply. Additionally, we had several of our closest friends and family members put their lives on hold to be by our side and keep us company. I feel so truly blessed. Trying to quantify just how appreciative I am is next to impossible.
In happy moments PRAISE GOD
In difficult moments SEEK GOD
In quiet moments WORSHIP GOD
In painful moments TRUST GOD
In every moment THANK GOD
As I move forward from what I believed to be the most critical of the all the phases of treatments I try to embrace and welcome the current series of chemotherapy infusions that I am receiving with open arms. The critical phase that I am referring is, of course, the surgery. Do you ever find yourself playing mind games in an attempt to alter reality or try to envision an upcoming event to be so horrible that when the moment actually presents itself, it doesn’t seem all that bad? Well that is exactly what I did preparing for my trip to Ann Arbor for my own personal dissection. I had every emotion you could imagine blustering through my head like a whirlwind. The anxiety, the uncertainty, and the fear continued to grow exponentially leading up to the morning of December 10th and started taking control of my thoughts, and essentially my days. I was fortunate enough to find that inner peace and temporary sense of tranquility as I awoke that Friday morning. I thought I was mentally prepared for all that was about to happen, but the truth is, I wasn’t--not even close. Maybe it was just because I hadn’t really slept in weeks and it was 5:30 in the morning, but all the events leading up to the moment that the anesthesiologist made me go sleepy seemed so surreal as if I was having an out-of-body experience. My last memory before being sent off to dreamland was the operating room itself. Not because it was the last thing I saw, but because of how enormous it was. There were so many lights, computers, life support machines, and people for that matter. Here I was lying on a table with nothing more than the equivalent of a large paper towel covering me, about to have a major surgery and there is a room full of people carrying on about their business like it was no big deal at all. I know they do this several times a day, so in a strange way their demeanor helped calm my nerves.
The anesthesia is injected, Errick is off in space somewhere, and the surgeons begin slicing. I don’t feel bad for being underprepared and for not knowing exactly how things were going to go. As it turns out, the doctors discovered quite a surprise themselves once they had me filleted open like the fresh catch of the day at some seafood restaurant. The cancer was worse than anticipated and was affecting many other structures than those originally determined to be in danger. 15 hours later and well into the wee hours of the morning when it was all said and done, they left me with just a third of my pancreas, a sliver of liver (actually about half), no more gall bladder, bye-bye rectum, they confiscated eleven lymph nodes, and let’s not forget that huge chunk of my abdominal wall that was removed and redirected as an internal patch. The surgeons were all amazing and I was returned to my family breathing and with a heartbeat. As you may have expected, that result was not a guarantee. Based on the amount of innards that they removed, you may think the remaining organs would be bouncing around like a bunch of bees in a mason jar, but you would be wrong. I couldn’t believe how tight my entire abdomen was after surgery. And as a parting gift from the OR, I received a nice dinner plate sized bed sore on my lower back just above my rump.
I don’t remember saying this; however, I’m told my very first words when I returned from la-la land were “Hudson, I woke up!”
My amazing and loving wife’s first comment to me was, “You went in my husband, and came out my hero!”
The anticipated 7-10 days of hospital recovery was grossly underestimated and my dreams of spending Christmas at home with my family did not happen. A few days after surgery, the recovery took a turn for the worse. Just for a bit of imagery, picture a football. The laces of the ball would represent the stapled-shut incision that begins at my sternum and runs vertically down a few inches below my belly button, while the smooth leather part would represent the rest of my torso. Now try imagining what would happen if you started pumping air into the already inflated ball and didn’t stop. The football would start to split in half at the laces until you could see the inside of the ball. Well as unpleasant as that sounds, that is exactly what was happening to my abdomen. Due to the excessive internal fluid production and the fact that my bowels were completely frozen and expanding with every bite of food or sip of water, my stomach was literally ripping apart at the seams. Needless to say, this wasn’t a good thing so I was whisked away for my second visit to the OR. All the internal stitches and initial patch-work was comprised due to the fluid so they had to re-do and double up on the pigskin (the patch material) and had to add a significant number of additional stitches to hopefully keep my insides from trying to escape again. In an attempt to prevent a replay, they inserted five JP drains into various areas of my abdomen. On one end of the JP drain, the part that remains inside the abdominal cavity was a long flat rectangular rubbery piece with a bunch of holes in it to draw the fluid, while the other end, which remains outside the body, is a large suction bulb about the size of a softball. Both ends are attached together by rubber tubing approximately the diameter of a standard pencil. Now I have about a thousand IVs, a ton of heart monitor wires, an epidural in my spine, and a maze of fish tank tubing flowing out of me that are anchored down by bulbs full of juice. Not a pretty picture.
With the exception of what I have been told and a few memories I wish not to remember, the majority of my first three weeks in the hospital is a complete blur to me. That’s right, I said first three weeks. There would be yet another 10 fun filled days, making my total vacation 31 days in total. There were definitely some big victories including two bits of great news while I was taking up residence at U of M. I had been so scared that this disease was genetic and that I could have passed this on to my beautiful son, so we decided to have some genetic testing done. The test results proved that my cancer had seemingly no genetic components and that Hudson shouldn’t have an increased risk of being diagnosed with this horrible disease later in life. What a huge relief! Unfortunately, he will still have to get routine testing starting 10 years before my diagnosis, so Happy 21st Hudson, have a beer and a colonoscopy! Additionally the pathology report showed that the surgeons were able to accomplish their goals and that negative margins were achieved.
Each passing day seemed to be different from the one before. My emotions and energy levels were up and down. With each step forward, there seemed to be a step back. This was very discouraging for me. I was so exhausted all the time and I was unable to get any quality sleep. The doctors experimented with a few different things in an attempt to help me get some rest, but they were unsuccessful for the most part. I must have had a bad reaction to the meds one night because I woke up believing I was a blue alien living on a spoon. I honestly thought that after all I had been through, my body just wasn’t strong enough to carry on and I was going to die. That was a really strange morning.
One doctor described my situation like this: my body was literally acting as if it was running a marathon everyday and that my nutrition and protein needs were outrageous and hard to fulfill. It seemed as if they were trying to force feed me food and protein supplements because that is something that I desperately needed. I was labeled as extremely malnourished. My body was essentially eating itself to keep up. During my stay, I had lost nearly 50 pounds. I was receiving a significant amount of intravenous nutrition, but those bags had such a high amount of glucose in them they were causing my blood sugar to sky rocket leaving me extremely dizzy and lightheaded requiring multiple insulin shots daily. Thankfully that resolved once the nutrition IVs were discontinued and fears of being permanently diabetic from the pancreas dissection were calmed.
A few days after Christmas the decision to remove some of the JP drains and my catheter was made. I was so excited because I believed that this was a huge step and that I could be released to go home to ring in the New Year with my loved ones very soon. One of the problems with having a catheter in for as long as I did is the likelihood of getting a lazy bladder. Well just as expected, my bladder had gone into hibernation. This meant that all the little muscles used to urinate weren’t functioning correctly so I could not empty my bladder when using the restroom; however, a significant amount of fluid came gushing out of me during one of my attempts. Where was this coming from? Well let me tell you. There was still a tremendous amount of fluid being produced and my abdomen was at maximum capacity creating a ton of internal pressure, so when I stood up to use the facilities, the fluid I noticed dripping into the toilet was all that excess juice being squeezed out of me. Every place there was an opening in the skin, there was fluid draining out. My stomach was like a big water balloon that had several holes poked into it. Clearly this wasn’t supposed to be happening so yet another trip to the OR was required for the third time. The fluid compromised the internal patching after the first surgery, hence the second surgery, so we were extremely concerned that could be happening again. Fortunately there wasn’t any real damage this time and they were able to insert another drain and suck out the fluid to rectify the problem.
The epidural I first received for my initial surgery didn’t seem to provide much relief, so it was removed and oral meds were tried. Well the experiment with the oral meds seemed to be a bust, so as a last resort, they placed a second epidural which actually seemed to work great. A day or two after that third surgery, it was time to remove the new epidural and switch back to oral pain meds. There were two major problems with this. One, the narcotics created constipation which was extremely painful given the fact that my digestive track and bowels had just been carved up. Two, they weren’t working. The doctors initially thought the dosages just weren’t right so they increased those, but as a result it was binding me up more and more. After a day or two of popping pain meds like tic tacs without any relief, I decided to play doctor for a few minutes and concluded that the constipation pain was worse than the surgical pain so I stopped taking the narcotics cold turkey. Looking back on the situation I shouldn’t have taken matters into my own hands and I should have tapered down on the drugs rather than stopping abruptly. In the following days after my executive decision, I started feeling really weird and the walls seemed to be closing in on me. I was going bananas and didn’t know why. It turns out that I was actually having drug withdrawals. It seemed as if I was losing my mind and the only thing that was going to help was time.
I can’t imagine what my wife was thinking and feeling as she saw me dealing with all these challenges, but I do know how amazing she was. The truth of matter is, I was really unpleasant and downright mean to her on several occasions. My actions and words were unintentional, but the pain and frustrations were pouring out of me. Regardless of why I was lashing out at times, she stood by my side the entire time and supported me unconditionally. I can’t thank her enough for loving me so deeply. Additionally, we had several of our closest friends and family members put their lives on hold to be by our side and keep us company. I feel so truly blessed. Trying to quantify just how appreciative I am is next to impossible.
In happy moments PRAISE GOD
In difficult moments SEEK GOD
In quiet moments WORSHIP GOD
In painful moments TRUST GOD
In every moment THANK GOD
Tuesday, November 16, 2010
Phase Two in a Nutshell
A lot has changed since the last time I sat in front of this computer composing a blog entry. In my writing absence, I have completed the second phase of treatment which consisted of twice daily chemotherapy pills and one 35 minute radiation session per day. I have to admit that I went into this phase with the wrong expectations. I definitely talked myself into believing that it wouldn’t be that bad and that the worst was behind me. Sure, Phase One and the way the chemo was administered over a 48-hour period was tough to handle because the concentration of poison going into my body was so high, but the two week cycles allowed me to have a few days at the end of each period to feel better and function on some level. Even though the doctors warned me not to take the chemo pills lightly, I questioned how bad it could really be. Daily treatments had to mean much lower doses which my body could handle, right? Not so much. Maybe the doses were lower, but the cumulative effect starting setting in after about 3 days and I quickly started to take a turn for the worse. The overall crappiness I felt after chemo in Phase One had returned, only this time I had no breaks. Every day was a struggle and my body was deteriorating fast. I had hopes that I could spend time playing with my son and still have enough energy for my wife in the evening to maybe watch a television program or a movie. I even convinced myself that I would begin exercising again and start putting a little bit of meat back on my bones. Wow, wishful thinking! I struggled to get out of bed in the mornings and couldn’t wait until 8pm each night so that I could slither back into the sack. I was pretty much living each day one hour at a time on the couch watching reruns. All those hopes of physical activity were quickly shut down when I realized the chest pains would return anytime I decided to move around for more than 3 or 4 minutes. These episodes were slightly less intense, but severe enough to know that I better lay down immediately before an ambulance would be needed.
As previously mentioned, Phase Two consisted not only of daily chemotherapy, but also daily radiation. Through conversations with my radiation oncologist, I somehow concluded that I really shouldn’t expect a lot of side effects from this component of care. She mentioned that I may develop some skin irritations that would resemble a really bad sunburn and some serious fatigue. Well, I am a Florida boy, so what is a little sunburn? And, I was already spending 95% of my day lying in the bed or on the couch, so how much more fatigue could I really experience? It looked as if chemo was going to be my only problem for the first three weeks… until the skin irritations began. Let me just refresh your memory, I have rectal cancer, so you can imagine where the burns were located. A bad sunburn on your tushy is one thing, but this wasn’t just any sunburn. The burns were so bad and so deep that the skin would blister and bleed. Any movement whatsoever was a nightmare. When the blistered skin would shift during simple actions like walking, it would rub until layers of skin would rip off and expose rare tissue. I don’t know if all Northern states have the same problem, but the roads in Michigan are so beat up and bumpy from the weather conditions that my 25-minute drive to and from radiation everyday was very much dreaded, to say the least. The creams that I could use were helpful, but the skin just wasn’t healing fast enough each night before getting fried again the very next morning, making it progressively worse with each passing day. I was walking around like a newborn giraffe and struggling to find relief. I have never actually tried ripping off a big scab and pouring salty lemon juice over the open wound, but I think I now know exactly how it would feel. These burns also made me fear putting food in my mouth because I knew it had to come out the other end at some point. Trying to use the bathroom was such a painful experience. I found myself wondering what forms of torture could be worse. I imagine I could have tolerated the burns if they were on my arm or something, but the inconvenient location made for very trying times.
It makes sense to me that microwaving part of my digestive system and taking handfuls of poisonous pills on a daily basis may cause a few additional problems. Right around the end of week three of six, I started having tremendous stomach pains. I was experiencing bowel ischemia, which means the vasospasms that were occurring in my heart during Phase One had traveled south and started to cause spasming of my intestines instead. I was initially put on medication, but that didn’t work and the cramping and pain just kept getting worse. Doctors feared the cramping was so severe that my organs may have, in a sense, knotted up and started strangling themselves, so an abdominal CT scan was immediately ordered. Thankfully the scan didn’t show anything too major, just a really bad case of yet another rare side effect, so I was ordered to lay off the chemo pills for a few days. At first, the layoff was only to last 2 or 3 days; however, it took an entire week before the pain subsided. The big hoo-rah of this experience was that the CT scan not only showed no major damage to my organs, but the test actually showed a continued shrinkage of the tumor and liver lesion. I needed to hear something positive and those reassuring words made it a little bit easier to deal with all the other side effects. I know The Lord is with me and that he will never give me more that I can handle, but for awhile there I thought he was testing me, trying to figure out just how much I could take.
October 25th was the final day of both chemotherapy and radiation. As bad as I wanted to feel better immediately, it took just over a week to flush enough of the chemo out so that I wouldn’t feel its fury and also for the skin on my bottom to heal to a point of acceptable relief. Just knowing that I didn’t have to go to treatment the next day and knowing that things weren’t going to get any worse was a huge psychological victory. Each day since then has been noticeably better than the previous. Minor discomforts and pains still remain, but when you have been through the wringer, there are some things you can learn to deal with. I am so blessed to be feeling better, or dare I say almost normal? I get to spend time playing with Hudson, I have been able to get back in the gym for some light workouts, and I even have some energy left to stay up after Hudson goes down to hang out with my wife. Other than the fact that I have developed some sort of sleeping disorder or anxiety issue that has kept me from getting more than an hour or two of sleep each night for the past month, everything is great. It truly is!
The next couple of weeks will be packed with doctor visits and even a family trip to Florida. I have until December 10th to enjoy my family, feel normal, and get myself into the best shape that I can. Why December 10th? On that day I will be at the University of Michigan getting sliced up like a Christmas ham, undergoing one major surgery after another. First, the colo-rectal surgeon will cut me from sternum to pubic bone to remove Trudy and all the effected lymph nodes, muscle, and tissue in my pelvis, as well install my new colostomy bag. Second up is the liver specialist who will do a resection of the liver to remove the lesion. And finally, the plastic surgeon will come in and remove one half of my abdominal wall to use it as a patch to close up the voids in my pelvis which should not only keep my remaining organs in place, but also allow for much better wound healing. For you visual people, the docs describe this as turning a six-pack into a three-pack.
I know the surgery will bring about new challenges, but it will take me one step closer to completing this battle with cancer. I am so grateful to be moving forward with my treatments. Moving forward means that I have successfully completed the phase before, which is never a guarantee. I know God has granted me this opportunity for a very special reason, and as I move forward it continues to become clearer. The timing of this process is also proving to be much more than just a coincidence. Because I have been fortunate enough to stay on track with my treatments, my surgery will be completed in enough time to have me home with my family for Christmas. Wow, just the thought of being home with my family and not in a hospital bed has brought me to tears. I would be lying to you if I said that I wasn’t scared of what is yet to come, and now that a surgery date is set, things are becoming far too real. I have felt The Lord’s hand on my back this entire time and believe he will continue to lift me up, but some funny jokes or words of encouragement are always welcomed. Humor has always been a coping mechanism for me and has allowed me to stay upbeat and positive throughout this journey. I know the next couple of weeks will fly by and the surgery date will be upon me, but without December 10th there would be no chance at another 50 years.
don’t give up…DON’T EVER GIVE UP
1 Corinthians 10:13 (The Message)
13No test or temptation that comes your way is beyond the course of what others have had to face. All you need to remember is that God will never let you down; he'll never let you be pushed past your limit; he'll always be there to help you come through it.
As previously mentioned, Phase Two consisted not only of daily chemotherapy, but also daily radiation. Through conversations with my radiation oncologist, I somehow concluded that I really shouldn’t expect a lot of side effects from this component of care. She mentioned that I may develop some skin irritations that would resemble a really bad sunburn and some serious fatigue. Well, I am a Florida boy, so what is a little sunburn? And, I was already spending 95% of my day lying in the bed or on the couch, so how much more fatigue could I really experience? It looked as if chemo was going to be my only problem for the first three weeks… until the skin irritations began. Let me just refresh your memory, I have rectal cancer, so you can imagine where the burns were located. A bad sunburn on your tushy is one thing, but this wasn’t just any sunburn. The burns were so bad and so deep that the skin would blister and bleed. Any movement whatsoever was a nightmare. When the blistered skin would shift during simple actions like walking, it would rub until layers of skin would rip off and expose rare tissue. I don’t know if all Northern states have the same problem, but the roads in Michigan are so beat up and bumpy from the weather conditions that my 25-minute drive to and from radiation everyday was very much dreaded, to say the least. The creams that I could use were helpful, but the skin just wasn’t healing fast enough each night before getting fried again the very next morning, making it progressively worse with each passing day. I was walking around like a newborn giraffe and struggling to find relief. I have never actually tried ripping off a big scab and pouring salty lemon juice over the open wound, but I think I now know exactly how it would feel. These burns also made me fear putting food in my mouth because I knew it had to come out the other end at some point. Trying to use the bathroom was such a painful experience. I found myself wondering what forms of torture could be worse. I imagine I could have tolerated the burns if they were on my arm or something, but the inconvenient location made for very trying times.
It makes sense to me that microwaving part of my digestive system and taking handfuls of poisonous pills on a daily basis may cause a few additional problems. Right around the end of week three of six, I started having tremendous stomach pains. I was experiencing bowel ischemia, which means the vasospasms that were occurring in my heart during Phase One had traveled south and started to cause spasming of my intestines instead. I was initially put on medication, but that didn’t work and the cramping and pain just kept getting worse. Doctors feared the cramping was so severe that my organs may have, in a sense, knotted up and started strangling themselves, so an abdominal CT scan was immediately ordered. Thankfully the scan didn’t show anything too major, just a really bad case of yet another rare side effect, so I was ordered to lay off the chemo pills for a few days. At first, the layoff was only to last 2 or 3 days; however, it took an entire week before the pain subsided. The big hoo-rah of this experience was that the CT scan not only showed no major damage to my organs, but the test actually showed a continued shrinkage of the tumor and liver lesion. I needed to hear something positive and those reassuring words made it a little bit easier to deal with all the other side effects. I know The Lord is with me and that he will never give me more that I can handle, but for awhile there I thought he was testing me, trying to figure out just how much I could take.
October 25th was the final day of both chemotherapy and radiation. As bad as I wanted to feel better immediately, it took just over a week to flush enough of the chemo out so that I wouldn’t feel its fury and also for the skin on my bottom to heal to a point of acceptable relief. Just knowing that I didn’t have to go to treatment the next day and knowing that things weren’t going to get any worse was a huge psychological victory. Each day since then has been noticeably better than the previous. Minor discomforts and pains still remain, but when you have been through the wringer, there are some things you can learn to deal with. I am so blessed to be feeling better, or dare I say almost normal? I get to spend time playing with Hudson, I have been able to get back in the gym for some light workouts, and I even have some energy left to stay up after Hudson goes down to hang out with my wife. Other than the fact that I have developed some sort of sleeping disorder or anxiety issue that has kept me from getting more than an hour or two of sleep each night for the past month, everything is great. It truly is!
The next couple of weeks will be packed with doctor visits and even a family trip to Florida. I have until December 10th to enjoy my family, feel normal, and get myself into the best shape that I can. Why December 10th? On that day I will be at the University of Michigan getting sliced up like a Christmas ham, undergoing one major surgery after another. First, the colo-rectal surgeon will cut me from sternum to pubic bone to remove Trudy and all the effected lymph nodes, muscle, and tissue in my pelvis, as well install my new colostomy bag. Second up is the liver specialist who will do a resection of the liver to remove the lesion. And finally, the plastic surgeon will come in and remove one half of my abdominal wall to use it as a patch to close up the voids in my pelvis which should not only keep my remaining organs in place, but also allow for much better wound healing. For you visual people, the docs describe this as turning a six-pack into a three-pack.
I know the surgery will bring about new challenges, but it will take me one step closer to completing this battle with cancer. I am so grateful to be moving forward with my treatments. Moving forward means that I have successfully completed the phase before, which is never a guarantee. I know God has granted me this opportunity for a very special reason, and as I move forward it continues to become clearer. The timing of this process is also proving to be much more than just a coincidence. Because I have been fortunate enough to stay on track with my treatments, my surgery will be completed in enough time to have me home with my family for Christmas. Wow, just the thought of being home with my family and not in a hospital bed has brought me to tears. I would be lying to you if I said that I wasn’t scared of what is yet to come, and now that a surgery date is set, things are becoming far too real. I have felt The Lord’s hand on my back this entire time and believe he will continue to lift me up, but some funny jokes or words of encouragement are always welcomed. Humor has always been a coping mechanism for me and has allowed me to stay upbeat and positive throughout this journey. I know the next couple of weeks will fly by and the surgery date will be upon me, but without December 10th there would be no chance at another 50 years.
don’t give up…DON’T EVER GIVE UP
1 Corinthians 10:13 (The Message)
13No test or temptation that comes your way is beyond the course of what others have had to face. All you need to remember is that God will never let you down; he'll never let you be pushed past your limit; he'll always be there to help you come through it.
Tuesday, September 21, 2010
The Results Are In
What is a PET/CT scan? This test is very useful in determining where tumors may be within the body and also allows the doctors to see just how active the cancerous cells are. The process actually begins the day before the test with a controlled diet. I have to eliminate all sugars, breads and grains, which leaves me feeling hungry all day, but at least I get to eat something. Thank goodness they scheduled my test first thing in the morning. Bright and early the day of the test, I arrive at the cancer pavilion and get checked into my preparation suite. I hang out watching Sports Center for about an hour while the radioactive glucose they inject me with has time to circulate through my body. After that initial sixty minutes or so, they take me to the freezing cold exam room. They cover me up with several warmed blankets, get me aligned properly, and inject me with some addition contrast. The process is pretty cool. This stuff really warms your body, so you can feel it rushing through your veins. The test itself only takes about twenty minutes. How does it work? Well, keeping it very simple, any active cancer within the body will feed on this serum and literally glow on the scan like a little light bulb.
The results are in and we couldn’t be more excited. Although the scan indicates that there are still active cancer cells present each place they were originally found, the tumor has reduced significantly in size and the metabolic activity at the other sights has slowed down considerably. The two months of chemo did exactly what it was suppose to do. All glory be to God. Sure it would have been awesome to hear the doctor say that the cancer was completely gone, but getting the cancer under control and reducing the size of the tumor was really the goal of Phase 1. We are now ready to move on to Phase 2 of this process, which is radiation and daily chemotherapy.
Although I am extremely grateful for God’s mercy on me at this point, I can’t help but accept this news with a heavy heart. For the first time in this entire process, I am asking “why me.” Why is God putting me on the path to remission, but not saving others of strong faith? Don’t get me wrong, I feel so blessed and I am extremely thankful for the success that I am having, but I know others aren’t so lucky. Cancer is such a horrible disease and it can affect anybody. Over the past couple of months, my wife and I have learned about some great people around our age that are fighting cancer battles of their own. Some of them are having similar successes and I am so happy for them, but there are also some who aren’t receiving such good news from their doctors. My heart just bleeds for them and I feel so helpless. It’s hard to imagine how they keep it all together after more and more devastating news. The Lord is the ultimate physician and he is working miracles in my life, but because of the connections we’ve made, I find myself asking why he has chosen me. I am hardly out of the woods at this point and still have a long journey ahead of me with no guarantees, but right now I’m getting encouraging news with a hopeful future. This gift of life is so amazing. I have wanted to be a better man and a better Christian for a long time, but now it is so much more. I don’t only want to change myself, but I also want to find a way to bring all those who haven’t found the Lord into His awesome kingdom and forever change their lives as well. I have felt His love and His embrace, and there is nothing like it. I now pray that everybody can be so blessed, and experience His indescribable love.
So, as I move on from this PET scan, I will continue to praise God and pray that He will continue to keep me on this path to survival. I popped in my chemo pills today for the first time, so I also pray that he spares me of any heart-related side effects or any other painful side effects for that matter. As always, thank you for your amazing, continued prayers. God is answering them and I am humbled.
The results are in and we couldn’t be more excited. Although the scan indicates that there are still active cancer cells present each place they were originally found, the tumor has reduced significantly in size and the metabolic activity at the other sights has slowed down considerably. The two months of chemo did exactly what it was suppose to do. All glory be to God. Sure it would have been awesome to hear the doctor say that the cancer was completely gone, but getting the cancer under control and reducing the size of the tumor was really the goal of Phase 1. We are now ready to move on to Phase 2 of this process, which is radiation and daily chemotherapy.
Although I am extremely grateful for God’s mercy on me at this point, I can’t help but accept this news with a heavy heart. For the first time in this entire process, I am asking “why me.” Why is God putting me on the path to remission, but not saving others of strong faith? Don’t get me wrong, I feel so blessed and I am extremely thankful for the success that I am having, but I know others aren’t so lucky. Cancer is such a horrible disease and it can affect anybody. Over the past couple of months, my wife and I have learned about some great people around our age that are fighting cancer battles of their own. Some of them are having similar successes and I am so happy for them, but there are also some who aren’t receiving such good news from their doctors. My heart just bleeds for them and I feel so helpless. It’s hard to imagine how they keep it all together after more and more devastating news. The Lord is the ultimate physician and he is working miracles in my life, but because of the connections we’ve made, I find myself asking why he has chosen me. I am hardly out of the woods at this point and still have a long journey ahead of me with no guarantees, but right now I’m getting encouraging news with a hopeful future. This gift of life is so amazing. I have wanted to be a better man and a better Christian for a long time, but now it is so much more. I don’t only want to change myself, but I also want to find a way to bring all those who haven’t found the Lord into His awesome kingdom and forever change their lives as well. I have felt His love and His embrace, and there is nothing like it. I now pray that everybody can be so blessed, and experience His indescribable love.
So, as I move on from this PET scan, I will continue to praise God and pray that He will continue to keep me on this path to survival. I popped in my chemo pills today for the first time, so I also pray that he spares me of any heart-related side effects or any other painful side effects for that matter. As always, thank you for your amazing, continued prayers. God is answering them and I am humbled.
Tuesday, September 14, 2010
Phase 1: Completed
I take a deep breath and then sigh in relief, I have completed phase one of my treatment. Two months of inpatient chemotherapy and all the fun and fantastic side effects that came along with it are finally behind me. The last round in the hospital went just as I could have expected, exactly like all the others. It is funny that of all the treatments, this final visit was the most dreaded. I had so much difficulty focusing on the fact that this was going to be the end of a very rocky road. I guess I was just thinking about all of the crazy side effects that were inevitably going to happen, or possibly I was just so eager to be done that time seemed to stand still. The nurses were all so great and did everything that they could to make me feel comfortable and got me anything that I needed. Perhaps that is why it was almost sad leaving the hospital that Monday morning. I developed friendships with a handful of my nurses and it was somewhat bittersweet to say goodbye. I can’t say that I am going to miss a single element of the chemotherapy, but I know I will never forget the experience. Thinking back at all the curve balls and strange and unexpected surprises I endured, I have to say that I am proud of what I have accomplished up to this point and I am eagerly awaiting phase 2 of my journey.
September 20th marks the first day of radiation treatments, which will be accompanied by daily oral chemotherapy. The doctors have warned me not to take the new chemo too lightly, though. They described the pills as a wolf in sheep’s clothing. I won’t actually know for a few more days just how the new drugs will affect me, but I’m hoping the lower daily doses won’t slow me down nearly as much as the stuff in round 1. It is incredible to me just how far science has come and the amazing treatments that are available today. Just a few short years ago when radiation was administered, it was directed at the affected cancerous areas, but anything in the line of fire, healthy or not, would also get zapped. Think about all the goodies that are down in your lower abdomen and pelvic region: bladder, intestines, etc . Thank goodness for new age technology, hopefully now I won’t have to borrow any of Hudson’s diapers. Today they can actually avoid causing collateral damage to healthy tissue and focus the radiation on just the cancerous cells and tumors. Hearing that was sweet music to my ears. As you might expect, this phase of treatment is very precise. As part of my initial consultation and dry run of the radiation procedure, they made a body mold from my pelvis down and actually gave me three little tattoos as reference markers to ensure that my body will be positioned exactly the same way each day when I come in for treatment. I am told that radiation really doesn’t cause many side effects of its own. If anything, I may experience something like a bad sunburn on my keister where the radiation passes through the skin.
When this whole thing started, I was in so much constant pain that I couldn’t wait for the next time I could pop in another pain pill. Times were really tough and each day was a struggle. Over the past couple of months I have been feeling better and better. The pain is slowly diminishing and I have been able to become more active, which has granted me many more opportunities to play with my baby man. He is almost 10 months old now, which means he is changing every day and having many “firsts.” I am so grateful that I am able to spend more time with him and my lovely wife. It may not sound like a gigantic triumph to you, but this week I was actually able to take a walk around the neighborhood with my family for the first time. Other than my routine daily pills, I don’t take any additional breakthrough pain medications and haven’t done so for about two weeks. I believe that the chemotherapy has been destroying Trudy, and I know that the Lord has his healing hands upon me working miracles in my life. Yesterday morning I got up before the sun and headed down to the cancer pavilion for a PET/CT scan. It is time to see just how effective all the drugs have been over the past two months. Unfortunately, the results won’t come in for a few more days, so we will all have to wait for the verdict.
Even though I feel so much better, I haven’t forgotten about the bad times. I bring this up for a very important reason. When you are in constant pain or are constantly feeling like dog dookie, it is extremely hard to focus on anything else despite your best efforts. From the beginning, I have been showered with warm wishes and prayers from friends and family, which has meant so much to me. Often times people would state that they wish they could do more. I have to say, those emails and prayers were so much more than you could imagine. Every time I would read a message, even though it may have only taken a few short moments, I tried to think of a funny story or experience I had with that person. Sometimes those short one line “I am thinking about you” messages would lead to 10 minutes, 30 minutes, or even an hour or so of great memories. This is so important because for that period, I was able to think about something other than being sick or being in pain. I don’t know how else to explain it, but those words got me through what has been the toughest time in my life to date. Thank you so much!
September 20th marks the first day of radiation treatments, which will be accompanied by daily oral chemotherapy. The doctors have warned me not to take the new chemo too lightly, though. They described the pills as a wolf in sheep’s clothing. I won’t actually know for a few more days just how the new drugs will affect me, but I’m hoping the lower daily doses won’t slow me down nearly as much as the stuff in round 1. It is incredible to me just how far science has come and the amazing treatments that are available today. Just a few short years ago when radiation was administered, it was directed at the affected cancerous areas, but anything in the line of fire, healthy or not, would also get zapped. Think about all the goodies that are down in your lower abdomen and pelvic region: bladder, intestines, etc . Thank goodness for new age technology, hopefully now I won’t have to borrow any of Hudson’s diapers. Today they can actually avoid causing collateral damage to healthy tissue and focus the radiation on just the cancerous cells and tumors. Hearing that was sweet music to my ears. As you might expect, this phase of treatment is very precise. As part of my initial consultation and dry run of the radiation procedure, they made a body mold from my pelvis down and actually gave me three little tattoos as reference markers to ensure that my body will be positioned exactly the same way each day when I come in for treatment. I am told that radiation really doesn’t cause many side effects of its own. If anything, I may experience something like a bad sunburn on my keister where the radiation passes through the skin.
When this whole thing started, I was in so much constant pain that I couldn’t wait for the next time I could pop in another pain pill. Times were really tough and each day was a struggle. Over the past couple of months I have been feeling better and better. The pain is slowly diminishing and I have been able to become more active, which has granted me many more opportunities to play with my baby man. He is almost 10 months old now, which means he is changing every day and having many “firsts.” I am so grateful that I am able to spend more time with him and my lovely wife. It may not sound like a gigantic triumph to you, but this week I was actually able to take a walk around the neighborhood with my family for the first time. Other than my routine daily pills, I don’t take any additional breakthrough pain medications and haven’t done so for about two weeks. I believe that the chemotherapy has been destroying Trudy, and I know that the Lord has his healing hands upon me working miracles in my life. Yesterday morning I got up before the sun and headed down to the cancer pavilion for a PET/CT scan. It is time to see just how effective all the drugs have been over the past two months. Unfortunately, the results won’t come in for a few more days, so we will all have to wait for the verdict.
Even though I feel so much better, I haven’t forgotten about the bad times. I bring this up for a very important reason. When you are in constant pain or are constantly feeling like dog dookie, it is extremely hard to focus on anything else despite your best efforts. From the beginning, I have been showered with warm wishes and prayers from friends and family, which has meant so much to me. Often times people would state that they wish they could do more. I have to say, those emails and prayers were so much more than you could imagine. Every time I would read a message, even though it may have only taken a few short moments, I tried to think of a funny story or experience I had with that person. Sometimes those short one line “I am thinking about you” messages would lead to 10 minutes, 30 minutes, or even an hour or so of great memories. This is so important because for that period, I was able to think about something other than being sick or being in pain. I don’t know how else to explain it, but those words got me through what has been the toughest time in my life to date. Thank you so much!
Subscribe to:
Posts (Atom)