After John's treatment this morning (his final one in this 4-week-long round), we packed up, bid farewell to our friends at Hope Lodge, and headed back to Columbiana for a few hours at the office. After a take-out dinner and a little TV time, it is so great to crawl into our own bed and relax with our furry girls, Rachel & Trixie.
Four weeks of radiation results in a burned chin & a sore & painful mouth for John, but, hopefully, it will also result in eradicating the superficial spot on his chin. There will be follow-up appointments & scans at a later date to determine the success of this course of treatment. For now, though, we'll enjoy some much-deserved time at home.
Let the healing begin!!!
Friday, February 15, 2013
Thursday, February 14, 2013
It's Valentine's Day
Following Tuesday's treatment, we had our weekly visit with Dr. Yao, which resulted in a modification of the pain med dosage. This change has significantly reduced the pain, which allows John to get some quality rest during naps and overnight. He does, however, say that he feels a bit "goony" when he takes the full dosage of 10mg.....I wonder if he means "goonier" than usual? Hmmm!
We enjoyed our weekly"potluck" dinner here at the Lodge last evening. The staff provided a huge turkey which roasted all afternoon, and the residents completed the meal by adding side dishes: mashed potatoes/gravy, stuffing, corn souffle, steamed veggies, and a myriad of desserts. It smelled like Thanksgiving!!! It was a wonderful evening of good food & fellowship with a great group of people.
We were, however, saddened by the news one of our fellow residents received yesterday. Her husband has been battling lung cancer and has now been given possibly 6 months to live. He'll be released from the hospital tomorrow & transported home, where Hospice will step in and try to make their remaining time together as pleasant as possible. The amazing part is how all the lodge residents, once they heard the news, pulled together around her, providing any support we could. We may be battling different cancers, but are together in this journey and are constantly aware that "there, but for the grace of God, go I".
It's Valentine's Day......a day of romance, a day to express your love for the special person in your life. I am blessed to be married to a man who does not wait for this one day a year, but expresses his love daily, in so many different ways. Hope Lodge is not where I would choose to spend the day, but as long as we're together, we can celebrate Valentine's Day anywhere.
We look forward to tomorrow, as John receives his final radiation treatment in this 4-week round, and we can head back home to a life that resembles something close to "normal". It will be a couple months before they re-scan and we know how successful this treatment has been, as radiation continues work for that long after the last treatment. So, for now at least, we'll have a break from treatment and a chance to live life.
This evening, we held a "Town Hall" meeting at the Hope Lodge. A few of us "more experienced" residents were able to pass on things we've learned over our various stays to some of the newer residents......info about Hope Lodge, the various weekly happenings, and how things work around here, as well as things we've learned along the way which make navigating this journey through the cancer world easier, whether being treated at UH or Cleveland Clinic. Things like transportation schedules, financial help programs, well-being programs for both patient & caregiver, etc. Normally it takes some time to get acclimated and learn about all this. I remember the fear, the feeling of being totally over-whelmed, the "deer-in-the-headlights" feeling when we first arrived here & began treatment 15 months ago, so we felt it might be our way of giving back a little if we could make the journey a bit easier for those who follow us. After all, we're all in the same boat.
We enjoyed our weekly"potluck" dinner here at the Lodge last evening. The staff provided a huge turkey which roasted all afternoon, and the residents completed the meal by adding side dishes: mashed potatoes/gravy, stuffing, corn souffle, steamed veggies, and a myriad of desserts. It smelled like Thanksgiving!!! It was a wonderful evening of good food & fellowship with a great group of people.
We were, however, saddened by the news one of our fellow residents received yesterday. Her husband has been battling lung cancer and has now been given possibly 6 months to live. He'll be released from the hospital tomorrow & transported home, where Hospice will step in and try to make their remaining time together as pleasant as possible. The amazing part is how all the lodge residents, once they heard the news, pulled together around her, providing any support we could. We may be battling different cancers, but are together in this journey and are constantly aware that "there, but for the grace of God, go I".
It's Valentine's Day......a day of romance, a day to express your love for the special person in your life. I am blessed to be married to a man who does not wait for this one day a year, but expresses his love daily, in so many different ways. Hope Lodge is not where I would choose to spend the day, but as long as we're together, we can celebrate Valentine's Day anywhere.
We look forward to tomorrow, as John receives his final radiation treatment in this 4-week round, and we can head back home to a life that resembles something close to "normal". It will be a couple months before they re-scan and we know how successful this treatment has been, as radiation continues work for that long after the last treatment. So, for now at least, we'll have a break from treatment and a chance to live life.
This evening, we held a "Town Hall" meeting at the Hope Lodge. A few of us "more experienced" residents were able to pass on things we've learned over our various stays to some of the newer residents......info about Hope Lodge, the various weekly happenings, and how things work around here, as well as things we've learned along the way which make navigating this journey through the cancer world easier, whether being treated at UH or Cleveland Clinic. Things like transportation schedules, financial help programs, well-being programs for both patient & caregiver, etc. Normally it takes some time to get acclimated and learn about all this. I remember the fear, the feeling of being totally over-whelmed, the "deer-in-the-headlights" feeling when we first arrived here & began treatment 15 months ago, so we felt it might be our way of giving back a little if we could make the journey a bit easier for those who follow us. After all, we're all in the same boat.
Monday, February 11, 2013
Our final week
As we walked to UH this morning for John's treatment, the weather here in Cleveland was a balmy, breezy 51 degrees. This afternoon, as I sit looking out over the Lodge gardens enjoying a steaming cup of coffee & a Starbucks Apple Fritter (yum), it is now a blustery 31 degrees and very windy.....with the windchill making it feel much colder. That's life in N. E. Ohio!!!
As usual, we went home for the weekend. Unfortunately, 3 full weeks into the treatment and the side effects have really kicked in. The mouth rinse still temporarily numbs the pain, but does not last through the night for him to get a good night's sleep. So, he now uses percocet or oxycodone for the pain before bedtime. John being John, he held off as long as he could....he is definitely not one to take pills until absolutely necessary.
We've had a rough few days, but prayers continue to be answered, some stress has been relieved, and a huge weight has been lifted from our shoulders. We are so blessed, and always grateful, for the wonderful support system we've had.......family, church family, & friends......throughout this journey.
Only 4 treatments to go....and we continue to fight.
As usual, we went home for the weekend. Unfortunately, 3 full weeks into the treatment and the side effects have really kicked in. The mouth rinse still temporarily numbs the pain, but does not last through the night for him to get a good night's sleep. So, he now uses percocet or oxycodone for the pain before bedtime. John being John, he held off as long as he could....he is definitely not one to take pills until absolutely necessary.
We've had a rough few days, but prayers continue to be answered, some stress has been relieved, and a huge weight has been lifted from our shoulders. We are so blessed, and always grateful, for the wonderful support system we've had.......family, church family, & friends......throughout this journey.
Only 4 treatments to go....and we continue to fight.
Thursday, February 7, 2013
Greek Night
Last evening a lovely, very generous, greek family cooked & served an authentic Greek dinner for all of us here at Hope Lodge. The meal consisted of greek chicken, pastitsio, salad, spanakopita, etc. and ended with a do-it-yourself ice cream sundae bar. They, then, provided some entertainment in the way of conducting a night of Bingo for those interested. We are always so appreciative of those willing to give of their time, talents, and resources to provide an evening of diversion for us all.....and we are all so blessed to have them.
The last two day have been difficult for John....there's a lot of pain & discomfort in his chin & mouth. The prescription solution that he swishes in his mouth does help, as it has a numbing agent, but it can only be used every two hours. So, we're usually anxiously awaiting the time for the next dose. Only 6 more treatments to go now, and then we can return home to beging the healing process.
A few of our "lodge-mates" finished up this week and headed home today. It's always bittersweet.....we hate to see them go, but are happy they're headed home for a break from this world of cancer. We all feel blessed to have the Hope Lodge to come to, but, as they say, there's no place like home!!!
We were saddened earlier this week to hear of the passing of one of our former lodgemates. She was a transplant patient, a very sweet woman. Our schedules were such that over the summer & fall of 2012, we spent many weeks together here at the Lodge. Her husband, Jim, took such good care of her.....it was a joy to watch them together. Jim was also a very talented pianist and provided lovely music for us on many an occasion. John especially loved when Jim was here....he would make up his own "play lists" for Jim of songs he wished to hear.....and I think Jim always enjoyed the challenge of learning any he didn't already know.
One last treatment this week (tomorrow A.M.) after which we will head home for the weekend & get rejuvenated for our final week. They initially told us 4 - 6 weeks for this treatment and I am thanking God it's only going to be 4 weeks!!!
The last two day have been difficult for John....there's a lot of pain & discomfort in his chin & mouth. The prescription solution that he swishes in his mouth does help, as it has a numbing agent, but it can only be used every two hours. So, we're usually anxiously awaiting the time for the next dose. Only 6 more treatments to go now, and then we can return home to beging the healing process.
A few of our "lodge-mates" finished up this week and headed home today. It's always bittersweet.....we hate to see them go, but are happy they're headed home for a break from this world of cancer. We all feel blessed to have the Hope Lodge to come to, but, as they say, there's no place like home!!!
We were saddened earlier this week to hear of the passing of one of our former lodgemates. She was a transplant patient, a very sweet woman. Our schedules were such that over the summer & fall of 2012, we spent many weeks together here at the Lodge. Her husband, Jim, took such good care of her.....it was a joy to watch them together. Jim was also a very talented pianist and provided lovely music for us on many an occasion. John especially loved when Jim was here....he would make up his own "play lists" for Jim of songs he wished to hear.....and I think Jim always enjoyed the challenge of learning any he didn't already know.
One last treatment this week (tomorrow A.M.) after which we will head home for the weekend & get rejuvenated for our final week. They initially told us 4 - 6 weeks for this treatment and I am thanking God it's only going to be 4 weeks!!!
Monday, February 4, 2013
2 o'clock & all is quiet
Yes, it's 2PM, Monday afternoon, and all is very quiet at the Hope Lodge of Cleveland. It seems the chilly temps and the falling snow have sent everyone back under the covers for nap time, including John. And as I sit here in my recliner, cozy in by flannel PJ pants and under a soft blanket, I'm thinking of joining the ranks of the nappers. It's not often I get to nap, so I think I'll sieze this opportunity!!!
It was evident today was a struggle as we walked back from UH after John's 11:15 treatment. It seemed as if it was all he could do to navigate the parking lot & enter the Lodge. Added to that is the mouth pain, which is making him miserable.......thankfully, he does get at least some temporary relief from the pain when he uses the prescription mouth rinse. So after some lunch, a little iPad time, and some meds, he is sound asleep.....resting peacefully. I love sitting here and watching him sleep, as I know he's getting the rest he so desperately needs.....God is good!!!
It was evident today was a struggle as we walked back from UH after John's 11:15 treatment. It seemed as if it was all he could do to navigate the parking lot & enter the Lodge. Added to that is the mouth pain, which is making him miserable.......thankfully, he does get at least some temporary relief from the pain when he uses the prescription mouth rinse. So after some lunch, a little iPad time, and some meds, he is sound asleep.....resting peacefully. I love sitting here and watching him sleep, as I know he's getting the rest he so desperately needs.....God is good!!!
Sunday, February 3, 2013
Ready to begin week #3
Well, it's Superbowl Sunday and we arrived back at Hope Lodge (after a weekend at home) just in time for the Superbowl Party, but just missed the beginning of the game. Sadly, though, the 49ers were not victorious.
Our weekends at home are usually a whirlwind of activity: leaving here early Friday afternoons & heading straight to the office to catch up on what has happened during the week & working until 7 - 7:30 that evening then heading home for some "fuzz-therapy", Saturdays spent running errands & stocking up on groceries for the next week's stay at the Lodge, but my favorite part is being able to attend my own church on Sunday mornings & be surrounded by this wonderful group of people who have been so very supportive throughout this journey. Then it's home to finish up packing & hit the road for the Hope Lodge......and, yes, I am tired by the time Sunday night rolls around!!
I want to digress a bit, as I missed a couple of posts last week. On Thursday evening we were treated to dinner & entertainment by some students (undergrad & graduate) from The Cleveland Institute of Music. They set up a wonderful taco bar for us: soft & crispy taco shells, and all the necessary trimmings for making our own......topped off by dessert of ice cream sundaes. Afterwards we enjoyed their beautiful, relaxing music.....some solo, some duet, and a string quartet.....in the livingroom. I'm always humbled by the desire of these young people to share their time & talents with us.....I don't think they have any idea the impact they make. We are blessed at Hope Lodge to have many evenings similar to this. There are so many organizations & individuals providing these wonderful diversions, whether it's dinner, entertainment, bingo night, crafts, music therapy.....it seems there is always something going on.
And so, as we begin week #3, John is tired, radiation-burned, and has begun with the soreness in his mouth. Thankfully, he has a prescription solution that contains a numbing agent which successfully provides relief. No real issues with eating yet.....praying that doesn't happen this time.
Our weekends at home are usually a whirlwind of activity: leaving here early Friday afternoons & heading straight to the office to catch up on what has happened during the week & working until 7 - 7:30 that evening then heading home for some "fuzz-therapy", Saturdays spent running errands & stocking up on groceries for the next week's stay at the Lodge, but my favorite part is being able to attend my own church on Sunday mornings & be surrounded by this wonderful group of people who have been so very supportive throughout this journey. Then it's home to finish up packing & hit the road for the Hope Lodge......and, yes, I am tired by the time Sunday night rolls around!!
I want to digress a bit, as I missed a couple of posts last week. On Thursday evening we were treated to dinner & entertainment by some students (undergrad & graduate) from The Cleveland Institute of Music. They set up a wonderful taco bar for us: soft & crispy taco shells, and all the necessary trimmings for making our own......topped off by dessert of ice cream sundaes. Afterwards we enjoyed their beautiful, relaxing music.....some solo, some duet, and a string quartet.....in the livingroom. I'm always humbled by the desire of these young people to share their time & talents with us.....I don't think they have any idea the impact they make. We are blessed at Hope Lodge to have many evenings similar to this. There are so many organizations & individuals providing these wonderful diversions, whether it's dinner, entertainment, bingo night, crafts, music therapy.....it seems there is always something going on.
And so, as we begin week #3, John is tired, radiation-burned, and has begun with the soreness in his mouth. Thankfully, he has a prescription solution that contains a numbing agent which successfully provides relief. No real issues with eating yet.....praying that doesn't happen this time.
Tuesday, January 29, 2013
Week #2....so far, so good
After John's usual 11:15 AM radiation treatment today, we had our weekly appointment with Dr. Yao, the radiation oncologist. He says things are progressing as expected and there are no signs of any damage from the treatment, as far as skin or mouth sores....always a good thing.
John did have a rough night Sunday. The air in the room was so dry (due to the winter weather), and he was in the early stages of a sinus infection, combining to make it difficult to breath. Our medical staff was right on top of that the next day, ordering a Z-pack immediately. That, combined with the humidifier I purchased for the room, made last night much more restful for both of us.
So thankful for the warmer weather this week, making our daily walk to the hospital far more bearable.......from wind chills of -13 last week to 50 degrees today!!
We were treated to a pasta dinner tonight prepared & served by some members of a sorority from Case Western Reserve University complete with spaghetti & meatballs, salad, italian bread, & brownies for dessert. In addition, one of our fellow residents made delicious homemade apple pies. There's always something yummy around here......this may not be good for the waistline! Good thing we walk to & from the hospital everyday.
John did have a rough night Sunday. The air in the room was so dry (due to the winter weather), and he was in the early stages of a sinus infection, combining to make it difficult to breath. Our medical staff was right on top of that the next day, ordering a Z-pack immediately. That, combined with the humidifier I purchased for the room, made last night much more restful for both of us.
So thankful for the warmer weather this week, making our daily walk to the hospital far more bearable.......from wind chills of -13 last week to 50 degrees today!!
We were treated to a pasta dinner tonight prepared & served by some members of a sorority from Case Western Reserve University complete with spaghetti & meatballs, salad, italian bread, & brownies for dessert. In addition, one of our fellow residents made delicious homemade apple pies. There's always something yummy around here......this may not be good for the waistline! Good thing we walk to & from the hospital everyday.
Monday, January 28, 2013
We're Baaaack!!!
We're in week #2 at Hope Lodge of what could be a 4 - 6 week stay, as John is receiving another round of radiation....this time on his chin. But more about this later, first a recap of the last 6 months (since I don't think I've had an entry since July).
John continued on the clinical trial (Belinostat) through the end of September.....one week out of every three. In September, he was re-scanned and, though things were no worse, there was no improvement. Due to this stability, it was decided that he had probably reaped as much benefit from this treatment as he was going get. However, in the midst of the last few treatment weeks, he developed some bladder issues. A thickening of his bladder wall had been seen on previous scans and, although they continued to monitor the situation, it was decided not to take any action based on his other issues. That rapidly changed one morning in September when we arose at Hope Lodge and he was bleeding. We headed to UH at our usual time for the infusion, however, when we told our nurse about the situation she said no infusion and we were directly sent upstairs to see the urologist. To make a very long story short, he was in surgery the next morning. When the pathologist examined the tissue removed, he was hard-pressed to find any cancer cells. However, due to John's history, they've decided to treat it as a low-grade cancer.....no real treatment, but he has to be re-scoped every three months. He had his 1st re-scope in December and I'm happy to report all is clear!!
After that incident, and because all was "stable" in his last scans, the oncologist decided it was a good time to give him a break from treatment....which is what we did for the next four months. We were able to enjoy a more "normal" life for a change. We made three trips to Notre Dame for footballs weekends and enjoyed time spent with dear friends. In December, we returned to Cleveland for follow-up appointments and it was then decided that this small, superficial spot on his chin should be addressed.
So here we are, just beginning week #2 of electron radiation. Dr. Yao (radiation oncologist) feels it is very early & superficial and is confident this can be zapped. Also, as this is a different radiation than what he had last winter, they don't feel his side effects will be quite as severe, as far as interfering with his ability to eat....thankfully!!!
It's like old home week here at Hope Lodge, being back with some of the same people we saw off and on all summer. And the Lodge is doing it's usual great job of providing diversions......last week that included potluck dinner one night, music therapy on another, and bingo on yet another. When we returned Sunday evening (after our weekend at home) there was a group of kids here from Capital University (Columbus) sponsoring a bingo night and making fresh cookies for us. We hear so much of the negative stuff going on in the world, it's so refreshing to see this group of young people willing to drive 3+ hours one way to provide a nice evening for these cancer patients & caregivers. With every stay here, I am touched by just how much people really do care and want to help in any way they can....big or small.....and it is so very appreciated by all.
Thanks to all of you out there who care enough to want to read my ramblings.......I just think it's great therapy!! But most of all thank you for keeping us in your prayers.....there truly is nothing more important you can do for us. Stay tuned!!!
John continued on the clinical trial (Belinostat) through the end of September.....one week out of every three. In September, he was re-scanned and, though things were no worse, there was no improvement. Due to this stability, it was decided that he had probably reaped as much benefit from this treatment as he was going get. However, in the midst of the last few treatment weeks, he developed some bladder issues. A thickening of his bladder wall had been seen on previous scans and, although they continued to monitor the situation, it was decided not to take any action based on his other issues. That rapidly changed one morning in September when we arose at Hope Lodge and he was bleeding. We headed to UH at our usual time for the infusion, however, when we told our nurse about the situation she said no infusion and we were directly sent upstairs to see the urologist. To make a very long story short, he was in surgery the next morning. When the pathologist examined the tissue removed, he was hard-pressed to find any cancer cells. However, due to John's history, they've decided to treat it as a low-grade cancer.....no real treatment, but he has to be re-scoped every three months. He had his 1st re-scope in December and I'm happy to report all is clear!!
After that incident, and because all was "stable" in his last scans, the oncologist decided it was a good time to give him a break from treatment....which is what we did for the next four months. We were able to enjoy a more "normal" life for a change. We made three trips to Notre Dame for footballs weekends and enjoyed time spent with dear friends. In December, we returned to Cleveland for follow-up appointments and it was then decided that this small, superficial spot on his chin should be addressed.
So here we are, just beginning week #2 of electron radiation. Dr. Yao (radiation oncologist) feels it is very early & superficial and is confident this can be zapped. Also, as this is a different radiation than what he had last winter, they don't feel his side effects will be quite as severe, as far as interfering with his ability to eat....thankfully!!!
It's like old home week here at Hope Lodge, being back with some of the same people we saw off and on all summer. And the Lodge is doing it's usual great job of providing diversions......last week that included potluck dinner one night, music therapy on another, and bingo on yet another. When we returned Sunday evening (after our weekend at home) there was a group of kids here from Capital University (Columbus) sponsoring a bingo night and making fresh cookies for us. We hear so much of the negative stuff going on in the world, it's so refreshing to see this group of young people willing to drive 3+ hours one way to provide a nice evening for these cancer patients & caregivers. With every stay here, I am touched by just how much people really do care and want to help in any way they can....big or small.....and it is so very appreciated by all.
Thanks to all of you out there who care enough to want to read my ramblings.......I just think it's great therapy!! But most of all thank you for keeping us in your prayers.....there truly is nothing more important you can do for us. Stay tuned!!!
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