Today was cleaning day. Since the Lodge operates on donations, there is no staff to clean the rooms as there is in a hotel.....everyone is responsible for their own rooms. So, radiation at 11AM and then the rest of the day to ourselves to clean, read, socialize, and we managed a 2 hour nap before dinner.
After dinner, 2 interns from the music therapy program at UH provided some interactive music therapy for those interested. BTW, in this musical therapy, John played the part of Jack in Jack & the Beanstalk and now he's awaiting the arrival of his Oscar!!! My guess is he went along with this because one of the interns was a very attractive young lady. Is anyone out there surprised??
They, apparently, come every other Wednesday and this therapy has been proven to be very beneficial to both patient and caretaker. It seems there's always something going on here. It's not like you're just sitting around waiting for your next treatment or Dr. appointment, you actually feel like you're still living a life in the midst of all this. They do such a great job here...it's just more than I ever could have imagined.
Good news.....the antibiotic is kicking in, the sores on John's head are drying up, the pain from them has subsided, and he's able to sleep well without any interruption. Perhaps a small victory, but one we'll take.
Wednesday, November 30, 2011
Monday, November 28, 2011
Radiation Day 7
First, let me start off by explaining the name of my blog to those who don't know. When John was at Notre Dame, the Mayor of New York City was John Lindsay, so John acquired the nickname "The Mayor". Most people he knew in those days and the Air Force days know about this, but most people he met later on are unaware.
We were able to get home for the weekend, leaving here Thursday afternoon and returning Sunday evening. Spent several hours at the office on Friday, allowing us to catch up on everything and return to Cleveland with a clear mind.
I mentioned in a previous blog that John has developed a rash on his chest and head, just as he had done with the chemo treatments during the summer. The spots on his head have turned into blood blisters, have multiplied, and are painful. So, prior to today's radiation treatment, we saw our oncology nurse, Heather, who looked at them and said it was a skin infection.....apparently NOT uncommon in patients undergoing both radiation and chemo. So mega-doses of Augmentin twice a day, and she says he should begin to see a difference in a couple of days. So, we breathe a sigh of relief, but need to be especially careful of infection, due to a compromised immune system.
All things considered, he's doing well, although his taste buds are just beginning to be affected, as he says some things are beginning to taste "not quite right".
We were able to get home for the weekend, leaving here Thursday afternoon and returning Sunday evening. Spent several hours at the office on Friday, allowing us to catch up on everything and return to Cleveland with a clear mind.
I mentioned in a previous blog that John has developed a rash on his chest and head, just as he had done with the chemo treatments during the summer. The spots on his head have turned into blood blisters, have multiplied, and are painful. So, prior to today's radiation treatment, we saw our oncology nurse, Heather, who looked at them and said it was a skin infection.....apparently NOT uncommon in patients undergoing both radiation and chemo. So mega-doses of Augmentin twice a day, and she says he should begin to see a difference in a couple of days. So, we breathe a sigh of relief, but need to be especially careful of infection, due to a compromised immune system.
All things considered, he's doing well, although his taste buds are just beginning to be affected, as he says some things are beginning to taste "not quite right".
Thursday, November 24, 2011
Thanksgiving, 2011
What an amazing Thanksgiving Day it has been. We were not able to get home to spend it with our family. However, we were truly blessed to be able to spend it with 30+ other cancer patients/survivors & family members at the Hope Lodge. It was so very heartwarming to watch the laughter and spirited conversations going on at the various tables, knowing what these families are facing & battling everyday.
We shared a dinner this afternoon that was nothing short of fabulous, consisting of: Turkey & Stuffing, Ham, Mashed potatoes & gravy, sweet potatoes, brussel sprouts, corn, hot dinner rolls, trays of fresh veggies & dip and a dessert table of various pies, pumpkin roll, homemade cookies. My favorite dish, however, was something called Autumn Apple Salad prepared by one of our "Lodge-mates"....so delicious that I requested the recipe. So, for my church family....beware....this will probably appear at our next church dinner....LOL!!!
After dinner, we all lingered at the tables, enjoying each other's company & conversation.....as if we were long lost friends who'd known each other forever, instead of a few days/weeks. I can't imagine what the next 5 weeks hold for us, but this 1st week has been one amazing surprise after another. I suspect I will not leave this place in January the same person I was when I arrived in November.
We shared a dinner this afternoon that was nothing short of fabulous, consisting of: Turkey & Stuffing, Ham, Mashed potatoes & gravy, sweet potatoes, brussel sprouts, corn, hot dinner rolls, trays of fresh veggies & dip and a dessert table of various pies, pumpkin roll, homemade cookies. My favorite dish, however, was something called Autumn Apple Salad prepared by one of our "Lodge-mates"....so delicious that I requested the recipe. So, for my church family....beware....this will probably appear at our next church dinner....LOL!!!
After dinner, we all lingered at the tables, enjoying each other's company & conversation.....as if we were long lost friends who'd known each other forever, instead of a few days/weeks. I can't imagine what the next 5 weeks hold for us, but this 1st week has been one amazing surprise after another. I suspect I will not leave this place in January the same person I was when I arrived in November.
Wednesday, November 23, 2011
Radiation Day 6
Today was our long day, the one day of the week that John has both radiaion and chemo. Radiation is at 11AM; chemo at 12:30, with enough time in between to grab something to eat. Although this is low dose chemo and isn't as long as the one he did all summer, with all the paperwork, bloodwork, and IV meds required before, and then the 2 chemo drugs, it still takes about 4 hours. I know he's the one going through all this, but those hours spent sitting around a hospital are exhausting. By the time we got back to the Lodge, we had a snack, and then we both crashed for over an hour.
As he did with the last chemo, John has started developing a rash on his head and chest....a slight reaction to the drugs. So, as we did before, we've changed his shampoo/soap and started him on Zyrtec....worked the 1st time, I expect it will again.
Looking forward to Thanksgiving tomorrow. Although we can't be home with family, we're having a complete Thanksgiving dinner with all the trimmings here at the Lodge. Surprisingly, there are a lot of us who will be here....I think about 1/2 may have been able to go home for the long weekend.
Depending on how tired John is, we'll try to head home either tommorrow evening or Friday afternoon....need to check in on the business and get some fresh clothes, and then there's the fun of checking the mail and paying the bills!!! I'm especially looking forward to attending church on Sunday....I SO miss my church family.
So, here's wishing you all a wonderfully Blessed THANKSGIVING!!!
As he did with the last chemo, John has started developing a rash on his head and chest....a slight reaction to the drugs. So, as we did before, we've changed his shampoo/soap and started him on Zyrtec....worked the 1st time, I expect it will again.
Looking forward to Thanksgiving tomorrow. Although we can't be home with family, we're having a complete Thanksgiving dinner with all the trimmings here at the Lodge. Surprisingly, there are a lot of us who will be here....I think about 1/2 may have been able to go home for the long weekend.
Depending on how tired John is, we'll try to head home either tommorrow evening or Friday afternoon....need to check in on the business and get some fresh clothes, and then there's the fun of checking the mail and paying the bills!!! I'm especially looking forward to attending church on Sunday....I SO miss my church family.
So, here's wishing you all a wonderfully Blessed THANKSGIVING!!!
Tuesday, November 22, 2011
The Hope Lodge
It was a hectic two weeks preparing for our move, but things are in order at the office.....thanks to the help of a lot of good people. My sister, Michele, is moving into our house to care for the cats and the house, and she takes on the full load for caring for our brother, Bobby, in my absence. Without her, I don't know where we would be.
And so, on November 17, John had his 1st radiation treatment, along with a low-dose chemo (which he'll receive once a week), a combination they've apparently found to be very effective.
We checked in to the Hope Lodge early that evening. What an amazing place!!! A beautiful Frank Lloyd Wright-inspired building with about 30 private bedrooms/baths for those undergoing cancer treatment/surgery, along with family members and/or caretakers. In addition to the private areas, there are several TV-viewing areas, a beautiful livingroom w/fireplace, a library, a workout room, a large kitchen w/5 cooking stations, and a dining room. We're all provided with our own refrigerator, freezer, and pantry spaces for food storage.
Last evening (11/21) some of the ladies got together and prepared a spaghetti dinner, complete with salad and garlic bread, for all of us to share. Dinner was followed by entertainment provided by a group of University of Akron students who are involved with the Akron Cares organization. It was great of them to come and give us all a couple hours of fun and laughter.
The people staying here at the Lodge are all shapes, sizes, colors, and from all walks of life. So far we've met people from North Carolina, Fort Wayne, IN, Bradford, PA, Erie, PA, Michigan, Buffalo, NY...and various points in Ohio.....to name a few. You might think it would be a very sad place to be, but in many ways it is just the opposite. It's comforting to talk with others and compare "notes", but there is also a lot of laughter and such positive attitudes. You quickly realize that, no matter how difficult your situation, there's always someone else in worse circumstances. Being here has already been SUCH a learning experience.
John and I have decided that, during these early weeks while he still feels up to it, we are going to take advantage of some of the great museums within walking distance. To that end, today we spent the afternoon at the Cleveland Botanical Gardens, since it was too gray and rainy to be outside. Might as well make the most of the time we'll spend here.
And so, on November 17, John had his 1st radiation treatment, along with a low-dose chemo (which he'll receive once a week), a combination they've apparently found to be very effective.
We checked in to the Hope Lodge early that evening. What an amazing place!!! A beautiful Frank Lloyd Wright-inspired building with about 30 private bedrooms/baths for those undergoing cancer treatment/surgery, along with family members and/or caretakers. In addition to the private areas, there are several TV-viewing areas, a beautiful livingroom w/fireplace, a library, a workout room, a large kitchen w/5 cooking stations, and a dining room. We're all provided with our own refrigerator, freezer, and pantry spaces for food storage.
Last evening (11/21) some of the ladies got together and prepared a spaghetti dinner, complete with salad and garlic bread, for all of us to share. Dinner was followed by entertainment provided by a group of University of Akron students who are involved with the Akron Cares organization. It was great of them to come and give us all a couple hours of fun and laughter.
The people staying here at the Lodge are all shapes, sizes, colors, and from all walks of life. So far we've met people from North Carolina, Fort Wayne, IN, Bradford, PA, Erie, PA, Michigan, Buffalo, NY...and various points in Ohio.....to name a few. You might think it would be a very sad place to be, but in many ways it is just the opposite. It's comforting to talk with others and compare "notes", but there is also a lot of laughter and such positive attitudes. You quickly realize that, no matter how difficult your situation, there's always someone else in worse circumstances. Being here has already been SUCH a learning experience.
John and I have decided that, during these early weeks while he still feels up to it, we are going to take advantage of some of the great museums within walking distance. To that end, today we spent the afternoon at the Cleveland Botanical Gardens, since it was too gray and rainy to be outside. Might as well make the most of the time we'll spend here.
Background
In April, 2008, John had surgery removing the right parotid gland and surrounding tissue, after a lump was discovered in his right cheek. When the pathology came back, it indicated cancer, so in May he began 6 weeks of radiation, which ended in July, 2008. He suffered major fatique, as well as greatly diminished saliva production and tastebuds. Nothing tasted as it should and it was extremely difficult to swallow. The fatique issue resolved within a couple months, but the other issues took 3 - 4 months. By Christmas, we thought we could get back to life as usual.
That thought didn't last long. In April, 2009, a 2nd surgery removed a BB-like bump from the same location, which also was cancerous. As they were able to remove the entire thing, no additional treatments were indicated. And then we had 2 years of no additional issues.
In January, 2011, our family doctor noticed a lesion, again at the same location. At first it was thought to possibly be a radiation-related skin cancer. We were referred to a plastic surgeon, who removed it and, yes, it was a recurrence of the cancer. All treatments up through this point were in Youngstown, however, we always planned that, if there was a recurrence, we would quickly be in Cleveland.
And so, in February....during an absolute blizzard....we headed to University Hospital/Cleveland (connected w/Case Western Reserve University) to see an ENT oncology team. After much testing, the answer seemed to be an extremely radical surgery, which would include removal of his lower, right jawbone, which would be replaced with a titanium plate and also tissue and skin grafts from his thigh to his cheek. Surgery would have been approximately 12 - 14 hours with a very long recovery time. The last PetScan about a week before the scheduled surgery indicated 3 smalls spots on his lungs.....too small, in fact, to even get a biopsy. It was decided he should have a VATS procedure done (video-assisted thoracic surgery), where they were able to remove one of the nodules and pathology indicated it, too, was cancerous. As a result, the major surgery was cancelled.
He began chemotherapy in the spring.....one treatment every 3 weeks....with the last one being September 1. Those treatments were pretty intense and had us in the hospital on those days for 6 - 7 hours. Thankfully, though, those treatments were also very successful...tremendously reducing both the lung spots and the parotid issues. As we were told by one of the oncologists, chemo does a great job of reducing, but you need radiation to eradicate. So, we were referred to a radiation oncologist at UH and it was planned that John would receive 30 radiation treatments over a 6-week period, to begin November 17. This would require that we basically move to Cleveland for the rest of the year.
Thank God for the American Cancer Society. They have the Hope Lodge one block from the cancer center at UH where we will be living for the next 6 weeks free of charge. A much better option than the 1 1/2 hour commute to and from Cleveland everyday or staying in a hotel.....and so we move to Cleveland!!!
That thought didn't last long. In April, 2009, a 2nd surgery removed a BB-like bump from the same location, which also was cancerous. As they were able to remove the entire thing, no additional treatments were indicated. And then we had 2 years of no additional issues.
In January, 2011, our family doctor noticed a lesion, again at the same location. At first it was thought to possibly be a radiation-related skin cancer. We were referred to a plastic surgeon, who removed it and, yes, it was a recurrence of the cancer. All treatments up through this point were in Youngstown, however, we always planned that, if there was a recurrence, we would quickly be in Cleveland.
And so, in February....during an absolute blizzard....we headed to University Hospital/Cleveland (connected w/Case Western Reserve University) to see an ENT oncology team. After much testing, the answer seemed to be an extremely radical surgery, which would include removal of his lower, right jawbone, which would be replaced with a titanium plate and also tissue and skin grafts from his thigh to his cheek. Surgery would have been approximately 12 - 14 hours with a very long recovery time. The last PetScan about a week before the scheduled surgery indicated 3 smalls spots on his lungs.....too small, in fact, to even get a biopsy. It was decided he should have a VATS procedure done (video-assisted thoracic surgery), where they were able to remove one of the nodules and pathology indicated it, too, was cancerous. As a result, the major surgery was cancelled.
He began chemotherapy in the spring.....one treatment every 3 weeks....with the last one being September 1. Those treatments were pretty intense and had us in the hospital on those days for 6 - 7 hours. Thankfully, though, those treatments were also very successful...tremendously reducing both the lung spots and the parotid issues. As we were told by one of the oncologists, chemo does a great job of reducing, but you need radiation to eradicate. So, we were referred to a radiation oncologist at UH and it was planned that John would receive 30 radiation treatments over a 6-week period, to begin November 17. This would require that we basically move to Cleveland for the rest of the year.
Thank God for the American Cancer Society. They have the Hope Lodge one block from the cancer center at UH where we will be living for the next 6 weeks free of charge. A much better option than the 1 1/2 hour commute to and from Cleveland everyday or staying in a hotel.....and so we move to Cleveland!!!
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