The past 36 +/- hours have truly been a rollercoaster ride. John had his double radiation treatments yesterday, but things did not go well.
In the past week, the side effects have really intensified for him and have become unbearable. One of the big problems is the radiation has dried out his nasal mucous membranes and left it swollen, making it difficult to breath. During radiation he must wear a mask that prevents him from breathing through his mouth, so a couple of times they've had to stop treatment and pull him out of the machine due to breathing difficulties. I can only imagine the panic that must set in as you're lying in the machine, mask on, head immobilized, and you can't breath. One of those times was yesterday and it just, basically, put him over the edge. He spent the rest of the day and night in such a state of panic, pacing the floor from 3AM til after 6:30, totally restless and unable to calm down enough to sleep. As a result, he made the decision that he just could not go through with the last 2 treatments, which would have been today and tomorrow.
Aside from the breathing difficulties, the right side of his face has radiation burn, he's exhausted, his taste buds are gone, and his saliva production is almost nonexistent....making it all but impossible to eat. These days he lives on Carnation Instant Breakfast drinks, oatmeal, puddings, etc. It breaks my heart to see him like this and there is absolutely nothing I can do about it....I feel so helpless.
So, as this day draws to a close and we look forward to returning home tomorrow and beginning the recovery process, he has finally fallen asleep and is, at last, getting some much-needed rest.
Thursday, December 29, 2011
Monday, December 26, 2011
Our last week begins
Haven't posted in a few days, so I probably need to bring everyone up-to-date. Last Thursday's chemo was a "go", as John had good bloodwork and the neutrophil levels, which had previously been too low, are still up in the normal range. The best part of the day, however, was a return visit with Gracie (our canine friend), who walked up to John's chair, jumped up in his lap, and went sound asleep. If I didn't know better, I would swear John was purring...LOL!!!
With the Christmas weekend approaching, we were able to get out of Cleveland on Friday, following the 11AM radiation treatment and remain at home until today. I enjoyed Christmas Eve and Christmas Day services at my church, but because of concerns regarding John's immunity, we didn't participate in the usual Christmas festivities with my family....my Mom was sick and we just couldn't risk it. We did, however, have a nice quiet Christmas at home together, with my sister bringing us dinner on Christmas Day, and we spent the day relaxing and watching movies. It was a difficult weekend for John as he is just not feeling well these days....difficulty eating, absolutely no energy, etc.....he is just miserable.
Later this afternoon we'll head back to Cleveland for our final week of treatments. The plan is to return home for good this Friday, looking forward to beginning the recovery process and a better, healthier year in 2012.
What a pleasant surprise when we arrived back at Hope Lodge this evening....it seems Santa found us here, too. Outside our room was a huge gift bag filled with all types of goodies: candies, handcream, chapstick, hat, gloves, T-shirt, 2 teddy bears, a Christmas wall hanging (made by students of one of the local public schools), shower gel, and a handmade afgan!!! It is sometimes almost unbelievable the lengths they go to here to make your stay as pleasant and stress-free as possible. We, along with the other guests here, are constantly amazed, and so very thankful.
With the Christmas weekend approaching, we were able to get out of Cleveland on Friday, following the 11AM radiation treatment and remain at home until today. I enjoyed Christmas Eve and Christmas Day services at my church, but because of concerns regarding John's immunity, we didn't participate in the usual Christmas festivities with my family....my Mom was sick and we just couldn't risk it. We did, however, have a nice quiet Christmas at home together, with my sister bringing us dinner on Christmas Day, and we spent the day relaxing and watching movies. It was a difficult weekend for John as he is just not feeling well these days....difficulty eating, absolutely no energy, etc.....he is just miserable.
Later this afternoon we'll head back to Cleveland for our final week of treatments. The plan is to return home for good this Friday, looking forward to beginning the recovery process and a better, healthier year in 2012.
What a pleasant surprise when we arrived back at Hope Lodge this evening....it seems Santa found us here, too. Outside our room was a huge gift bag filled with all types of goodies: candies, handcream, chapstick, hat, gloves, T-shirt, 2 teddy bears, a Christmas wall hanging (made by students of one of the local public schools), shower gel, and a handmade afgan!!! It is sometimes almost unbelievable the lengths they go to here to make your stay as pleasant and stress-free as possible. We, along with the other guests here, are constantly amazed, and so very thankful.
Wednesday, December 21, 2011
Radiation Day 23
Saw the radiation oncologist, Dr. Yao, following today's treatment and he has approved "double" treatments next Wednesday. This means John will have his last treatment, #30, on Friday (12/30) and we can pack up and return home to begin the new year!!!
What we also found out during this appointment is that he has lost 5 lbs. in the last week alone. He had only lost 4# in the previous 4 weeks, so this is a bit of a concern. They watch the weight loss very carefully, since a cancer patient is usually losing muscle, where proteins are stored, which are needed to help fight cancer. So we continue to try different foods. Unfortunately, because of the damage to his tastebuds, nothing tastes as it should.....actually, he says alot of things taste bad, sort of metallic. I can only imagine how unpleasant it is to eat when your food has a bad taste. We are supplementing his food with the Ensure and Carnation Instant Breakfast drinks.....hopefully that will be enough along with the small amount of food he's able to get down.
All the residents of the Lodge were treated to a wonderful dinner this evening. A family who owns a local restaurant brought ravioli, pierogi, ham, scalloped potatoes, veggies, salad and an amazing amout of desserts. It was all delicious, with so many leftovers, I don't think any of us will have to worry about cooking dinner tomorrow. We were told by one of the volunteers that this family has been doing this dinner once a year (usually around Christmas) for several years now.....how great is that?
We sometimes become jaded by a society that seems always focused on themselves and forget that there are still some really good, caring people out there. Being here has renewed my faith in people.
What we also found out during this appointment is that he has lost 5 lbs. in the last week alone. He had only lost 4# in the previous 4 weeks, so this is a bit of a concern. They watch the weight loss very carefully, since a cancer patient is usually losing muscle, where proteins are stored, which are needed to help fight cancer. So we continue to try different foods. Unfortunately, because of the damage to his tastebuds, nothing tastes as it should.....actually, he says alot of things taste bad, sort of metallic. I can only imagine how unpleasant it is to eat when your food has a bad taste. We are supplementing his food with the Ensure and Carnation Instant Breakfast drinks.....hopefully that will be enough along with the small amount of food he's able to get down.
All the residents of the Lodge were treated to a wonderful dinner this evening. A family who owns a local restaurant brought ravioli, pierogi, ham, scalloped potatoes, veggies, salad and an amazing amout of desserts. It was all delicious, with so many leftovers, I don't think any of us will have to worry about cooking dinner tomorrow. We were told by one of the volunteers that this family has been doing this dinner once a year (usually around Christmas) for several years now.....how great is that?
We sometimes become jaded by a society that seems always focused on themselves and forget that there are still some really good, caring people out there. Being here has renewed my faith in people.
Monday, December 19, 2011
Radiation Day 21
It strikes me that I haven't posted for a few days, so it's time to update!! When we arrived for chemo last Thursday, the blood test results were waiting and, thankfully, they indicated John's neutrophil levels were back well within normal ranges...so they were able to proceed with treatment...yay!!! As I've mentioned before, this long day of radiation & chemo really knocks us out, so John followed up chemo with a much-needed 4-hour nap.
On friday, radiation as usual, then we packed up and headed home for the weekend, as always. The weekends at home are usually a whirlwind of running errands, laundry, heading to the office for a few hours on Saturday afternoon, and checking in on my brother. But they also involve attending church Sunday morning, where I get my "batteries" recharged for the new week ahead, able to face whatever might come our way.
The side effects have really begun to affect John....nothing tastes as it should; more & more difficulty getting food to go down; and a much increased fatigue level. Today it was all he could do to make the 5-minute walk over to the hospital & back for his treatment. We try as many soft foods as possible...mashed potatoes, noodles, eggs, pudding, applesauce, etc. We then supplement that with Ensure and Carnation Instant Breakfast, which provides extra calories and lots of nutrients that he might be lacking due to his limited diet. We must be doing something right as he's only lost 4 pounds in these first four weeks.
Today's radiation officially put us over the 2/3 mark. Also, we found out today that there is a possibility that John can have 2 treatments in one day (as long as there is a 6-hour window in between), which would allow us to finish treatment on the Friday before New Year's and NOT have to return for one last treatment in the new year. Praying this works out....would love to start of 2012 back at home with our family and friends....where we belong.
On friday, radiation as usual, then we packed up and headed home for the weekend, as always. The weekends at home are usually a whirlwind of running errands, laundry, heading to the office for a few hours on Saturday afternoon, and checking in on my brother. But they also involve attending church Sunday morning, where I get my "batteries" recharged for the new week ahead, able to face whatever might come our way.
The side effects have really begun to affect John....nothing tastes as it should; more & more difficulty getting food to go down; and a much increased fatigue level. Today it was all he could do to make the 5-minute walk over to the hospital & back for his treatment. We try as many soft foods as possible...mashed potatoes, noodles, eggs, pudding, applesauce, etc. We then supplement that with Ensure and Carnation Instant Breakfast, which provides extra calories and lots of nutrients that he might be lacking due to his limited diet. We must be doing something right as he's only lost 4 pounds in these first four weeks.
Today's radiation officially put us over the 2/3 mark. Also, we found out today that there is a possibility that John can have 2 treatments in one day (as long as there is a 6-hour window in between), which would allow us to finish treatment on the Friday before New Year's and NOT have to return for one last treatment in the new year. Praying this works out....would love to start of 2012 back at home with our family and friends....where we belong.
Wednesday, December 14, 2011
Celebrating all the winter holidays
Our usual day with 11AM radiation, but with some afternoon bloodwork added in. The lab work was done today in preparation for tomorrow's chemo, so by the time we arrive at chemo around Noon, they will already know whether John's neutrophil counts are back up in normal ranges and if they can proceed.
Lots of special treats this evening after dinner. The Young Professional ACS (American Cancer Society) volunteers came bearing all the fixings for decorating sugar cookies along with hot chocolate and hot cider. What a fun and delicious idea!!! We, then, proceeded to music therapy in the livingroom with our interns, Jaclyn & Nic, who led us in a discussion and musical celebration of Christmas, Hanukkah, and Kwanzaa. Enjoyed hearing some of the favorite Christmas memories that were shared and also everyone opening up and sharing what's important to them this time of year and, for that matter, all year long.
So many thanks to the young professionals and Jaclyn & Nic for taking their time to share with us all. It's a wonderful thing they do, but I doubt they know just how much it is needed and appreciated. They're a very special group and we wish them a very Merry Christmas!!!
Lots of special treats this evening after dinner. The Young Professional ACS (American Cancer Society) volunteers came bearing all the fixings for decorating sugar cookies along with hot chocolate and hot cider. What a fun and delicious idea!!! We, then, proceeded to music therapy in the livingroom with our interns, Jaclyn & Nic, who led us in a discussion and musical celebration of Christmas, Hanukkah, and Kwanzaa. Enjoyed hearing some of the favorite Christmas memories that were shared and also everyone opening up and sharing what's important to them this time of year and, for that matter, all year long.
So many thanks to the young professionals and Jaclyn & Nic for taking their time to share with us all. It's a wonderful thing they do, but I doubt they know just how much it is needed and appreciated. They're a very special group and we wish them a very Merry Christmas!!!
Tuesday, December 13, 2011
Progeny
What began as a 'normal' day at the Lodge today resulted in one of the best so far. Radiation at the usual time (11AM), followed by lunch. After lunch I decided to go shopping at Legacy Village while John rested and napped.....a little of the "me" time everyone keeps telling me I need.....and I must admit, I enjoyed being with just me for a little while. BTW, I've decided we really can't afford to stay here much longer....I keep going shopping!!!! LOL!!!
After dinner, at 7PM, a gospel group named Progeny came in and provided music in the livingroom.....a mix of Christmas & Gospel music. We heard a rendition of O Holy Night like I have never heard it before....gave me chills and brought tears. It was a wonderful & uplifting evening as we listened to, and joined in with, the music & singing. What a blessing that these people have chosen to share the love of God in this way.
I've said before that I thought this was going to be a very depressing place to be...surrounded as we are by all this cancer. The truth is that it has been anything but depressing.....at almost any time of day you'll find groups of people engaged in conversation & laughter; playing games; working on puzzles; or just gathered in front of a TV.
Had I been given the choice, I would not have chosen this path, but since it is the path I'm on, I'm so thankful that Hope Lodge exists. And we all continue our battle for another day.
After dinner, at 7PM, a gospel group named Progeny came in and provided music in the livingroom.....a mix of Christmas & Gospel music. We heard a rendition of O Holy Night like I have never heard it before....gave me chills and brought tears. It was a wonderful & uplifting evening as we listened to, and joined in with, the music & singing. What a blessing that these people have chosen to share the love of God in this way.
I've said before that I thought this was going to be a very depressing place to be...surrounded as we are by all this cancer. The truth is that it has been anything but depressing.....at almost any time of day you'll find groups of people engaged in conversation & laughter; playing games; working on puzzles; or just gathered in front of a TV.
Had I been given the choice, I would not have chosen this path, but since it is the path I'm on, I'm so thankful that Hope Lodge exists. And we all continue our battle for another day.
Thursday, December 8, 2011
The end of Week Three
We're officially at the end of week 3 of radiation, marking the approximate half-way point. The day began as usual with radiation at 11 AM, then on to chemo. However, when John's pre-chemo bloodwork came back it indicated a low Neutrophil reading....I'm told this is a subset of the white blood cells. The reading needs to be at least 1500, his was 1350 today after being 2200 one week ago. This may be a result of the skin infection on his head that I talked about earlier. He finished the antibiotic yesterday and it seems to be clearing up. So, the plan is to skip this chemo treatment and, possibly, add it on at the end....giving him a week to see if the count increases back into normal ranges so he can resume that part of his treatment.
We returned to the Lodge, had lunch, and John headed for bed and a nice long nap. He's cold all the time (not unusual for a radiation patient), so he bumped the thermostat in our room up to 76 degrees (a bit too warm for me), climbed into bed under a comforter and quilt, and was out like a light. After a quick trip to the grocery, I curled up in the recliner and joined him in naptime....a luxury I don't often have...and really enjoyed!!!
Tonight's dinner was a replay of last night's potluck (with some additions), so no major dinner preparations were required on our part.
Tomorrow, radiation as usual and then we head home for the weekend and for some feline "fuzz therapy" with Rachel and Trixie....can't wait. In the meantime, we continue the fight and pray these levels return to normal so treatment can resume.
We returned to the Lodge, had lunch, and John headed for bed and a nice long nap. He's cold all the time (not unusual for a radiation patient), so he bumped the thermostat in our room up to 76 degrees (a bit too warm for me), climbed into bed under a comforter and quilt, and was out like a light. After a quick trip to the grocery, I curled up in the recliner and joined him in naptime....a luxury I don't often have...and really enjoyed!!!
Tonight's dinner was a replay of last night's potluck (with some additions), so no major dinner preparations were required on our part.
Tomorrow, radiation as usual and then we head home for the weekend and for some feline "fuzz therapy" with Rachel and Trixie....can't wait. In the meantime, we continue the fight and pray these levels return to normal so treatment can resume.
Wednesday, December 7, 2011
Radiation Day 13
As some of you know, my sister, Michele, is living in our house while we're in Cleveland. We received a call from her about 11PM last evening letting us know the furnace was not working. Of course, this happens when we are out of town and the temp is supposed to dip below the freezing point!!! So, I spend a less than restful night thinking I'm going to have to buy a new furnace (something I really didn't want to do right now) and Michele and the cats spend the night with no heat. She calls our furnace guy this A.M., and he's there by early afternoon. It turns out the furnace was overheating, due to diminished air flow, and it shut itself down. The dimished airflow was caused by cat litter dust (thanks Rachel & Trixie) accumulating over time in the line that runs from the A/C unit outside into the furnace. Needless to say, the litter boxes have now been moved to the other side of the basement....far from the furnace.
It must have been the day for malfunctions, as John was in the Tomography machine receiving his radiation, when it stopped working....so he's 49 seconds short on this treatment. I don't know whether they now give him a 49 second treatment or add it to a future treatment...I guess we wait and see.
After all this, the day did conclude with a really nice potluck dinner at the Lodge......something we do every Wednesday. On the menu tonight: Mac & cheese; baked pineapple; sweet potatoes; corn casserole; home-canned peaches; home-made yeast rolls; green bean; roast w/veggies. Quite a menu, isn't it? We had so many leftovers, we've decided to repeat potluck dinner tomorrow night!!!
So, now it's off to bed, as tomorrow is our long day at the hospital with John receiving both radiation & chemo.....and our C-fight continues.
It must have been the day for malfunctions, as John was in the Tomography machine receiving his radiation, when it stopped working....so he's 49 seconds short on this treatment. I don't know whether they now give him a 49 second treatment or add it to a future treatment...I guess we wait and see.
After all this, the day did conclude with a really nice potluck dinner at the Lodge......something we do every Wednesday. On the menu tonight: Mac & cheese; baked pineapple; sweet potatoes; corn casserole; home-canned peaches; home-made yeast rolls; green bean; roast w/veggies. Quite a menu, isn't it? We had so many leftovers, we've decided to repeat potluck dinner tomorrow night!!!
So, now it's off to bed, as tomorrow is our long day at the hospital with John receiving both radiation & chemo.....and our C-fight continues.
Tuesday, December 6, 2011
Radiation Day 12
Haven't posted for a few days, so I'll catch everyone up. The radiation machine was completely down Friday, so no treatment allowed us to leave Cleveland & head for home a little earlier, stopping at Whole Foods Market for some fresh fish for dinner that night. The weekend found John experiencing a bit more in the way of side effects....diminished taste buds, a couple sores on his tongue, and a radiation burn on his right cheek.....none of which are uncommon. We discussed these issues with the radiation Doc today and he was able to offer some solutions that may help.
Life at the Lodge continues as normal. On an almost-daily basis, someone completes their treatment and leaves us, but there's always someone new, at the beginning of their treatments, coming in to replace them. This is a wonderful place and we're all so lucky it exists, but, sadly, it's a very busy place and there are always more cancer patients coming in.
Some music students from Case Western Reserve University brought some entertainment to us last evening in the form of a wind quintet.....beautiful music in a beautiful setting in front of the fireplace & Christmas tree in the parlor. We're so blessed that these kids are willing to take their time to do things like this.
One last thought....we're officially 1/3 of the way through radiation....yay!!!!
Life at the Lodge continues as normal. On an almost-daily basis, someone completes their treatment and leaves us, but there's always someone new, at the beginning of their treatments, coming in to replace them. This is a wonderful place and we're all so lucky it exists, but, sadly, it's a very busy place and there are always more cancer patients coming in.
Some music students from Case Western Reserve University brought some entertainment to us last evening in the form of a wind quintet.....beautiful music in a beautiful setting in front of the fireplace & Christmas tree in the parlor. We're so blessed that these kids are willing to take their time to do things like this.
One last thought....we're officially 1/3 of the way through radiation....yay!!!!
Thursday, December 1, 2011
Gracie
Gracie is a beautiful, black, 9-year-old standard Poodle and a member of the Therapy Dog program at UH. She and her person visited us while in chemo and provided a bright spot in this otherwise fouled up, and very tiring, day. More about Gracie later.
We awakened this morning with our day planned, knowing what we needed to accomplish......appt. with oncologist at 10 AM; radiation at 11 AM; chemo at 11:30...getting us out of the hospital by 3:30 - 4:00...life was good!!! But, nooooo, that was not to be. Radiation dept. calls to let us know the radiation machine is down & to check back with them after chemo, so we head to the doctor appt., then on to chemo. We finish chemo about 4PM, head to radiation, and because of the back-up from the machine being down, John doesn't go in until around 5:30, getting us back to the Lodge about 6PM, about ready to drop.
But in the midst of the chaos, Gracie arrives. What a great program this is....these dogs come (with their people) and provide some much needed cuddle time for the cancer patients AND their families. Although Gracie was very friendly toward us both, her person explained that she tends to gravitate to the "boys"....and today was no exception. She got right up there with John and just ate up all the attention he was giving her and gave him "kisses" in return, then laid down at his feet, using his foot as a pillow!!!
What a welcome respite. Many, many thanks to Gracie and her person!!!
We awakened this morning with our day planned, knowing what we needed to accomplish......appt. with oncologist at 10 AM; radiation at 11 AM; chemo at 11:30...getting us out of the hospital by 3:30 - 4:00...life was good!!! But, nooooo, that was not to be. Radiation dept. calls to let us know the radiation machine is down & to check back with them after chemo, so we head to the doctor appt., then on to chemo. We finish chemo about 4PM, head to radiation, and because of the back-up from the machine being down, John doesn't go in until around 5:30, getting us back to the Lodge about 6PM, about ready to drop.
But in the midst of the chaos, Gracie arrives. What a great program this is....these dogs come (with their people) and provide some much needed cuddle time for the cancer patients AND their families. Although Gracie was very friendly toward us both, her person explained that she tends to gravitate to the "boys"....and today was no exception. She got right up there with John and just ate up all the attention he was giving her and gave him "kisses" in return, then laid down at his feet, using his foot as a pillow!!!
What a welcome respite. Many, many thanks to Gracie and her person!!!
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