Our last night at Hope Lodge

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.

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.

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.

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.

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!!!

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.

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.

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.

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!!!!

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!!!

Radiation Day 9

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.

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".

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.

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!!!

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.

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!!!