Birch point blues

It’s a Birch Point tradition to feel blue on Sunday evening; returning to the city is oh so hard to do. We’ve managed to turn Sunday into Monday this summer, but it hasn’t helped a bit. The mamas and the papas sang about Mondays many moons ago. I should have known; I still feel blue.

We have a reason to rejoice, though, this week. John is coming in from New York to join us in celebrating our 24^th anniversary. It’s a year long erev 25^th; we’re starting early. Why not? Grandma and Tamara are organizing the event (dinner somewhere); the anticipation of a joyous occasion is enough to shake off the Birch Point blues.

Thinking back to our wedding is always a joyous trip down memory lane. We wanted a small country wedding, kibbutz style. We landed up with 200 people, but the country charm was far from lacking. Four pitchforks supported the chupah, and many of our guests disrobed and jumped into the lake during the festivities. Where has the time gone?

Gilly was up at 9:20 this morning; a new record (except for physio days when I wake him). His condition seems quite similar to what it was yesterday. I asked him what he thinks I ought to do to ensure that he eats and does his exercises once I go back to work. He offered to begin considering these matters his responsibility. I asked him to practise for the next two weeks, because time is ticking. He agreed to give it his best effort.

I’d like to take the day off tomorrow; there will be no blog because it is a Birch Point holiday; our 24^th. Rest assured he will be doing just fine; I’ll see to it.

I’ve had my lake swim and the dog hair is vacuumed; I suppose it’s time to hit the road once again.

In good company

I was right; as soon as Gilly made it upstairs in the wee hours of the morning, he shut all the windows and crawled into bed. I provided heat while he cooled me off; a genuine give and take relationship.

He rose at 10:00 and enjoyed a busy day on the point. Rosanne and Tina drove up for a few hours, and their presence rejuvenated him. The wharf filled up with neighbours, friends and family, drawn together to share a picture perfect day and good company. Gilly managed to make it down to the pier. He spent hours with us, drifting in and out of sleep.

He felt weak, but managed to get both walks in, work out with weights and complete the ball exercises. Our day was topped off with a visit from the St. Donat Blauers. We dined on the porch due to the smells permeating from the kitchen, which turn Gilly off (no matter is being prepared). It was rather chilly, but no one complained. He ate a meager portion, but it was better than nothing.

The smell of success

I’m learning the ropes; offer fewer smoothies, but lace each one with mega calories and protein. Today it worked like a charm; his appetite was much improved (everything is relative; we’re still not talking about a ‘normal’ appetite).

Late last night we made a pact; if there is no change to appetite by dinner time tomorrow (which is this evening), he will agree to drink Ensure. This agreement was made on the heels of a serious discussion. He turned up his nose at the first smoothie, so I made a second. He refused the second; I was at a loss. He clarified the reason for his appetite slide; when he smells something being cooked, he cannot eat it.

Today, I made sure to cook hours before he woke up so he would not smell the rice pudding. I made his lunch inside and served him outside on the balcony, so again, the odour was not that apparent. What an education I am receiving. It ain’t easy to ensure odourless cooking, especially when I myself do not have a sense of smell, but I’m giving it the old college try.

I’m pleased to report that we needn’t resort to Ensure at this point. I am not counting calories, but I prepared his food with the richest ingredients (I put cream in his smoothies and whole milk in his brown rice pudding). I really went whole hog this time. He was more energetic (perhaps as a result of what he ate, but there are other variables at play, many not apparent to the naked eye). His mood was brighter from the time he woke up until a few moments ago when he drifted off to sleep (on the couch, as is his habit. He has 2 phases of sleep; one downstairs and one up).

At 10:00 A.M. this morning I started my wake-up campaign, and by noon he was sitting at the table having rice pudding. I was able to squeeze 2 walks out of him with very little resistance. More calories = greater energy available to expend.

Gilly’s improved state had a positive effect on me; I treated myself to 2 long swims in between walks and smoothie duty. I can’t think of a greater reward than that for my efforts. I have to take it all in while the going is good. A bedraggled caregiver is no good to anyone.

There is a delicious, cool breeze coming off of the lake this evening. It’s time to turn in and enjoy the brisk wind, because Gilly may need to close the windows later on if it gets too cold. We sleep in shifts, we two.

His wish is my command

Yaron was gung ho to take the ‘booze and cruise’ for a spin around the lake as soon as we arrived up north. He asked if I’d like to come along, but I declined, because I had a smoothie to prepare, not to mention dinner (it was 8:00 P.M.). He asked if Gilly would care to join him. I was floored when he answered affirmatively. He hasn’t been on the lake yet this summer, and I assumed that the motion would be difficult to tolerate, but I was oh so wrong. They took Liylah and cruised around for quite some time. Having the kids around is more than wonderful, let me tell you! Gilly responds enthusiastically to their offers and is more likely to move out of his comfort zone and try new (old) things.

We enjoyed a peaceful late evening with Yaron while the mad potters glazed feverishly for their upcoming Raku session, weather permitting.

Appetite was truly nonexistent yesterday. He consumed one piece of toast, 3 mini carrots, 3 chips and I’d say 2 tablespoons of barley pea soup. He had trouble getting the smoothies down as well. I tried upping the smoothie servings due to how little he ate, but he was totally disinterested. I went into Ste. Agathe today to get the special, fresh cheddar that he requested (amongst other new possibilities to tempt him with). “How come you don’t buy the cheese from Bourassa anymore?” he asked me at breakfast. I traditionally have this cheese on hand whenever we’re up north, but this summer he showed no interest when I purchased it, so I ate it (and I do not need the calories, let me tell you, but I hate waste). It’s very rich, so I decided not to buy it again. Well, needless to say, his wish was granted and he had some for lunch.

I had to literally drag Gilly out of bed this morning at noon. I tried to rouse him 4 times, but I stood there and insisted on the fourth. I walked over to the Freders and asked Sheryl to join him for breakfast, thinking he’d eat more if socializing. He ate no more than usual, but thankfully no less.

I had to work on him big time to have him agree to take a walk. While we were strolling along, he admitted that he simply couldn’t lift his head off the pillow this morning; it was so heavy. This concerns me. Is there swelling due to lack of steroids (he’s been off completely for about a week now), or could it be depression, or perhaps the chemo took a greater toll because he was taken off the steroid at the same time…maybe just 2 full days in hospital waiting rooms tired him out??? In any case, if this continues, I will call Erica and ask what I should do.

When we returned from an abbreviated walk, I insisted he do the workout that Thi demonstrated for us yesterday. We did it together; he used the elastic and I used the weights (which according to Thi amounts to the same thing, but the elastic is easier to control). I wore him out, but he rose to the occasion. He’s fast asleep now. I have the smoothie ready (I’m supposed to give it to him 1 hour after exercising), and I’m praying he agrees to have dinner as well. If so, the hunger strike is over. Everything is pushed up very late when he wakes up at noon, because I have to space his medication properly from meal to meal.

During the Raku session (which lasted the better part of the day), Gilly emerged and asked if the ladies needed any help. For those of you who are unfamiliar with the term Raku, it is a Japanese primitive firing of ceramics, and my mom and Anne are hooked, and have been for 20 years now. The word Raku actually means ‘happiness,’ and it sure brings joy to those who partake (not to mention observers). They need muscle and extra pairs of hands to lift the kiln off of and onto the base where the fragile pieces are placed. Sadly, they were forced to decline his offer, since the kiln is rather heavy, and it is burning hot. He was invited him to watch instead, which he did for a spell. He probably could have mustered up the strength to manage the task, but his balance is poor, so it was too dangerous to chance. I was thrilled to see him come out to offer his services, though. He actually acted as their technological expert in years gone by and even fashioned some of their tools for them. Maybe next year, Gill.

When all else fails

Squishing all appointments in on Tuesdays, Wednesdays and Thursdays has its advantages and drawbacks. We spent another long day at the Jewish.

Gilly had a headache this morning, so Thi didn’t work him too hard, and used the time to demonstrate what we could do at home (which is easier said than done, but still, important to know). His headache resolved itself a short while later. It may have been casued by tooth pain.

We moved up to the 8th floor at around 9:30 to meet the primary nurse for the first time. Our appointment was for noon, but I was told to just come up after physio, and so we did. The secretary noticed a glitch, and made arrangements for us to be seen even though we were scheduled for the wrong day. We waited and waited and waited, and then finally were taken into another room to wait and wait and wait! It was about 11:30 when we were done! I’m glad we didn’t arrive at noon, because we would probably still be sitting there by this time.

Erica, the primary nurse, is a fountain of information, and very approachable. I asked many questions and so did she. Gilly turned to me every time she tried to extract information from him, but she was respectful and continued to see him as the ‘key’ character in the drama. She was asked to look into two matters, both of which she accomplished within two hours of our visit. She’s on the ball, and I feel safe with Gilly in her hands. One of the tasks she completed was to make an appointment with the psychologist in the oncology department. He’s going on vacation, so we have to wait until August 23rd to see him. At least we’re moving in a positive direction.

Dr. MacDonald called to say that Gilly’s blood test results (from yesterday) indicate low levels of certain hormones, so I was asked to hold off on filling the progesterone prescription for now. He needs to have more blood tests done next week so as to treat him properly. I personally was not surprised; I had my suspicions. I’m very glad that he’s part of the CNR program, or we would not know this information. The brain is an amazing organ. Gilly’s tumour is having a field day, encroaching on all sorts of body functions. Information about hormones and their role in appetite production is a whole new topic we’re about to become educated in.

Gilly’s toothache was examined by Marvin, but there is no evidence of further decay in the area, so no more fillings, drillings, or anything else that rhymes.

Yaron just arrived home (he came in late last night for his day off), and so we’re packing up for the trip up north. Gilly is resting as we scurry about. It was a long day of appointments (we were gone from 8:30 to 2:30) and he’s beat. Hunger is the furthest thing from his mind, but I’m hoping he’ll sup with his son and consume even just a little. Otherwise, I’ll make a second batch of smoothie for the evening hours; he seems to accept this when all else fails (thankfully).

Bon appetite

It was a long day at the CNR clinic, but much was accomplished. Gilly gained a kilo since the last visit, and his strength has improved as well. We now have a referral slip to hand to the primary nurse tomorrow so that she can arrange for Gilly to see the psychologist on the oncology team. Dr. MacDonald plans to consult with Dr. Kavan tomorrow regarding putting Gilly on progesterone to boost his appetite. His blood results show that his protein level is good. We were sent off with instructions to continue along the same lines, since progress is being made. Nelda will call the nutritionist at the CSSS to ask her to do a home visit mid-month, so Gilly will have more frequent follow-up.

All this took 2 hours and 45 minutes. Gilly was exhausted and freezing because of the air conditioning. Tamara was home for a visit when we returned; there’s no better medicine for either one of us. She urged her father to have some lunch (2 hours or so late due to the long appointment) and he gradually ate meager helpings of some of his all time favourite foods.

When it came time to sit down for supper, I was sure he would refuse to eat, since lunch was so late. Tamara put some food on his plate, but I explained (before he came up, of course) that it’s best to give him a small, empty plate and allow him to serve himself from a regular sized dinner plate. He feels less pressured this way, and tends to eat more.

She wanted to make hotdogs for dinner, but I insisted that he be presented with healthier food choices; he doesn’t need the nitrates (nor do we). I agreed that hot dogs be one of various options, because he needs the calories no matter what. She lovingly prepared a mixed grill. He sat down for dinner (after being beckoned repeatedly) and put a hot dog on his plate. Tamara glanced in my direction and smiled. He studied it for awhile, returned it to the dinner plate and proceeded to serve himself some meat, potatoes and green peas. “Did you notice that I’m eating?” he asked. “I was afraid to break the spell, so I decided not to say anything, but yes, I certainly did notice.” “Are you hungry?” I asked. “Yes, I am,” he admitted.

I wonder what that’s all about; it could be that the Temodal has finally started to flush itself out of his system (his last dose was Saturday night), or perhaps the discussions that took place in the nutrition clinic made an impact on his thinking. Maybe knowing he has gained some weight has had a positive psychological effect…who knows? My best guess is that having Max and Tamara grace our table is the most powerful contributing factor.

Tomorrow we have physio at 8:45, we meet the primary nurse at noon, and Gilly has yet another dentist appointment at 1:00 (his tooth started to hurt again this morning at breakfast). Somewhere in between, I have to scoot over to Vanier to submit my course pack.

If all goes as planned, it’s back on Autoroute 15 North later in the afternoon for four more days in paradise. The photo above depicts a cozy scene; man and his dog, settled in for the night, warm and toasty. If I recall correctly, I was taking my evening dip in the lake at the time to bring my body temperature down to a tolerable level. I guess opposites really do attract.

Physiotherapy went well this morning. Thi noticed an improvement to Gilly’s wrist control and gait. He continues to be concerned about Gilly’s lack of motivation, and this will surely be addressed tomorrow at the CNR follow-up appointment. I’m relieved that help is on the way. This program has been invaluable so far.

At breakfast, Gilly complained of toothache. On the way to physio, he called Marvin, and the tooth was repaired before day’s end (see photo of Marvin and Gilly enjoying the bonfire last Saturday up in the country. Thanks for the excellent camera work, Sharon).

I did not nudge Gilly to work out today, because physio is grueling enough for him. He spent most of his time on his chair, and most likely thoroughly enjoying the latitude I allowed in terms of demands I put on his time. No significant change to appetite is evident, although he agreed to eat all 3 meals (teeny tiny portions, mind you). The taste in his mouth has worsened, to the point that even the smoothies leave a bad taste. The smell of anything being prepared seems to precipitate the foul taste. He tried a popsicle last night after dinner, and that seemed to help clean his palate a bit, so I offered Sherbet tonight and it did the trick too. Unfortunately, the type I have is fat free and is sweetened with Splenda, so no calories there. I’ll have to buy a richer type tomorrow. These frozen treats do not serve to enhance appetite, but at least if offers some relief from the lingering, lousy taste.

I made some headway in terms of course planning for the fall today. I can’t believe I’m already on that page. The summer is flying by at tremendous speed. The time we’ve had together this summer was priceless, and there are still a few weeks more of respite (of sorts). I plan to savor every moment.

Well, I have the night off; I’m planning to see a movie with Susie. Everyone needs a break now and again, and this evening it’s my turn. Gilly is well fed (all things considering), warm and cozy. Liylah will keep him company for a spell while I gallivant over to the Cavendish Mall theatre (cell phone on vibrate).

An ounce of prevention...

Gilly sneezed repeatedly throughout the evening, but not a one during the night. At breakfast (around 10:00) he started up again, but much less frequently. It doesn’t seem like a cold, but we’ll be at the Jewish tomorrow for physio, so we can easily check it out if need be. No fever, which is a good thing.

This is an appropriate time and place to emphasize Gilly’s susceptibility to illness, now that he has had his first chemo session of somewhere between 8 and 11 more to come. He may not be able to fight off colds and other sorts of viruses, etc. so PLEASE be sure to bear this is mind if you are thinking of visiting him. He cannot live in a bubble, but there are steps we can all take to promote his safety. I myself am extremely careful to wash my hands, disinfect work surfaces in the kitchen and prepare and store foods safely. I do my best with what knowledge I have.

I’d rate Gilly’s energy level today to be on a gradual upswing; his overall demeanor seems marginally stronger. He walked a tad farther down the road this afternoon. His spirits are good, but he continues to need prodding to get him to eat and work out according to Thi’s instructions. This is my greatest challenge as a caregiver, because it sets me up as a nag and a half.

There’s no magic switch to turn on motivation; somehow, it must emanate from within (intrinsic motivation, as it is called in the literature). I am interested in and read about the topic of motivation all the time, on a professional level. I never dreamed of applying the principles to a person with an illness, let alone my best friend. It’s not as simple as dangling a carrot in front of his nose (and what the nature of that carrot might be is beyond me in this circumstance); he has to somehow accpet and deal with his plight, which poses ongoing enormous obstacles for him to overcome. It's hard for any of us to imagine what it must be like to have the carpet pulled from under one's entire life, no matter how empathetic one might be.

Walking down the scenic road with Gilly by my side, I have time to ponder (since he barely speaks and tires of my numerous attempts to strike up conversation). Today I was imagining how different our interactions would be if he developed some self-determination in two main areas (eating and following an exercise program). My hope is that one day soon he will take back the reigns and steer himself in an uphill direction. In the meantime, I try gentle reminders, and when that doesn’t work, I bump my efforts up a notch, and so on and so on…

The days are cooler now, so today Gilly bundled up and sat out on the porch for hours on end. I just had my final lake swim of the long weekend, and am packing up for the return trip while Gilly naps on a lounger. I don’t want to arrive home too late, because tomorrow is an early morning, so I must sign off, and pack up my computer.

3 cheers for Birch Point

Gilly awoke to the sound of Buddy’s yelps, heralding the arrival of Noam back from his month at camp. Breakfast was a social experience, but as we have come to expect of late, Gilly’s appetite was seriously lacking.

Next on the agenda: Repairing the squeaky stair. I remember when Gilly started to take over my dad’s country house repairs; Gilly would work while my father peered over his shoulder with genuine interest in the task at hand, willing to lend his knowledge and support as needed. He truly admired Gilly’s handiwork and the speed with which he could solve household problems. Now the tables have turned; Gilly watches Evan in much the same way. When Evan bid us adieu around mid-day, Gilly outwardly expressed his disappointment. Later on I asked, “You really enjoy having Evan around, don’t you?” “Yes,” he admitted, “I wish we could have at least 2 other Evans.”

Gilly was extremely tired today and napped intermittently. I did manage to get him down the road for a walk, but I did not push further. He started sneezing this evening. I hope he can shake what seems to be a little cold brewing. I’ll be watching carefully for warning signs of anything more serious. So far, all is well.

One more day in the country, then we must return to reality for a few days. The balance of 4 days in the country to three days in town suits us just fine. Gilly says he likes both, but Liylah and I give 3 cheers for Birch Point.

Sleeping on the job

I can’t believe it. I finally went to bed after a long day pushing pills and protein, and realized I had forgotten to check in, hence the reason for the VERY late posting tonight (actually in the wee hours of the morning).

The house was on wheels today; Evan and Keren arrived, and soon after Marvin, Sharon and Rosanne appeared. We were 11 for dinner, and as Susie would say, it was freilach. These are some of Gilly’s favourite people, so I’d say Gilly had a great day on that score.

The weather was downright chilly (my favourite), so Evan built a fire and Gilly was drawn to it on several occasions, including late at night, after he took the Temodal. This surprised me in a way, but I know how much he loves to be with Evan, so it makes a lot of sense that he would be attracted to the flames.

On the whole, his appetite was poor all day (except breakfast; he helped himself to 3 pieces of grandma Shirley's French Toast). I was pleased to see him assist Evan in some repair work on the dock and show a genuine interest in spending time with his friends. This is an excellent sign on an emotional level. He finished the 5 day course of chemo this evening, so hopefully his energy level will improve day by day. I'm relieved that the 5 doses did not cause any nausea whatsoever (as far as he admitted to anyway).

Now it’s really time for bed, so I bid you all goodnight. My sincere apologies to anyone waiting up for this report.

Generations

We spent a nostalgic day watching my dad’s videotapes, recording them onto DVD’s all the while; what a marathon. Gilly removed himself from the situation and relaxed on the porch. I have a few theories as to why.

He had trouble with appetite all day, and found it difficult to drink as much fluid as is recommended while on Temodal (actually, it is what we should all be drinking, if truth be told). “I’m floating,” he complained. I empathized, but continued to hydrate him because the doctors and nurses stressed the importance. His energy level was understandably low. It wasn’t his worst day yet, but it was certainly not the best either. Luckily, he still has not shown signs of nausea. I'm not sure we could hope for better, considering the situation.

Susie and Joey joined me, Gilly, my mom, Auntie Ruth, Fred and Debbie for Shabbat dinner. Gilly found the evening a bit too hairy; it’s harder to find a quiet niche here than it is at home. I felt for him and tried to keep the noise level down. He did not complain, but it was written across his face.

Life goes on, and so it should, but we must remember to respect Gilly’s needs at the same time. Everyone cares deeply, so all I have to do is ask, and the natives begin to whisper, and agree to lower the volume on the T.V. Auntie Ruth and my mom are still glued to the T.V., even though they're unable to hear with the volume so low, out of respect for Gilly.

The videos my dad made over the 22 years he had his recorder are addictive. Once we get going, it’s hard to stop. My father was a true documenter; he filmed our lives growing up on Super 8 (you know, the old reels), and continued with full force to capture his grandchildren on videotape. He was an amateur photographer as a teenager; we have some wonderful shots he developed in his own dark room. He came by it naturally; my grandfather kept a diary from the time he was very young (including his first hand account of the first world war as a soldier and a prisoner) and maintained a journal until he died. He took movies too when movie cameras first came out. I suppose it’s in my blood; I have taken to keeping an on-line journal (I.E. this blog), digital photos and all. I’ve inherited my dad’s video camera and his role; now I get the groans from my sister-in-law when I pull out the camera, “Don’t film me. My hair’s a mess.” Believe me when I tell you that it’s far from the truth. I should have such messy hair. With all the data we’ve collectively compiled, we have enough for a mini-series!

Moving uphill

Gilly was physically spent after the lawn care episode last evening, so he asked me to take him to the Zigman’s to say hello and goodbye. I did as he requested, and he ended up staying for about 2 hours. I haven’t seen him consume so much food in a while. Sharon, he really loved the turkey, and enjoyed every last drop of the mousse. Thanks for tempting his palate (and ours as well). It was a beautiful party.

We had a surprise visitor around midnight. Yaron decided to come in for his day off instead of spending it at the country house. I was especially pleased, since I had the day all wrong, and thought he’d be up north this evening until tomorrow evening. One day earlier is that much sweeter. Gilly was tickled pink. Yaron and his friends ‘chilled’ with him in the wee hours of the morning while I took advantage of a few hours of air conditioned sleep. He informed me, “Yaron and his friends always come down to say hi to me whenever they’re here,” grinning from ear to ear.

Thi called to cancel Physio or change it to Friday. We both agreed that the country is important, so we took the day off. Now we'll wait for Yaron to do his thing and then we’ll head up north.

Thi asked again about Gilly’s appetite, and expressed concern that his lack of appetite and low motivation to get involved in doing anything other than sitting around is not a good sign. I told him about yesterday’s incident with the psychotherapist, and mentioned that I put in a call to the social worker at the Jewish. He informed me that there is a psychologist connected to the oncology department, and he plans to recommend that Gily be seen. I’m so thrilled to have Thi and Nelda rooting for Gilly.

It’s a win-win situation when Yaron drives up north; he practices his driving, which he adores (and he’s excellent on the highway, so I can relax at this stage of the game). Gilly will sit up front next to his son, which allows them quality male bonding time. Gilly much prefers Yaron's driving to mine. He even told one of the many professionals (I forget which) this. Liylah and I plan to cuddle up in the back seat and dream of the lake and all it has to offer.

In general, I’d rate today as good. So far, he has eaten everything I put before him, and was open to eating protein for a snack and for lunch. He woke up at noon, so we’re on a late schedule (which is not ideal). I made an extra smoothie to take with us, so if he doesn’t eat a good dinner, I’ll offer this instead (as Nelda suggested). Things are looking up. The more he consumes, the stronger he feels, the more active he’ll become, and then the hungrier he’ll get, and so on and so on, and so on. 3 more chemo doses for this round and he’s back on a drug vacation for another 23 days. No more Decadron at this point.

Bon voyage, Bruce and Lea

No sign of nausea so far. I can attest to this; I stayed up all night watching him through a magnifying glass so I would be there to assist if anything occurred. Maybe it was not a good idea; it’s not even 6:30 P.M. and I‘m wilting.

Gilly slept like a baby, both downstairs and up. I had to rouse him at 9:00 for his 10:00 psychotherapy appointment, and this was no easy feat. We made it there exactly on time, only to discover that the appointment was for last Wednesday. Gilly was not too pleased, but I was furious. The doctor made the appointment with Gilly last Monday after meeting him for the first time. I was not in the room. He was not given a card with the date and time on it, but he assumed it would be Wednesday of the following week as opposed to the day after next. When he saw Gilly today he accused him of not even calling when he missed the appointment last week. Under the circumstances, especially since he’s a mental health professional, I feel he could have called when he failed to appear. Instead, he sent Gilly off with a new appointment for next week.

I put in a call to the social worker at the Jewish (Naomi) who is on vacation until August 1st to see if she has any alternative suggestions. I am hoping to have Medicare foot the bill, which was the reason I called this fellow in the first place. Gilly needs mental health support, but from a truly caring professional who understands Gilly’s predicament. He is not 100% on top of verbally transmitted details. The brain is involved in a big way (in fact, it couldn’t be bigger, when you think about it).

Andrew and Nicole came to visit, and brought a feast for a whole gang. My mom, Auntie Ruth and Susie joined us (the only other Blauers in town and not working). It was extremely sweet of them to come all this way with a 2 year old (Hannah) and a 10 week old (Samuel) and serve US lunch to boot. We really are blessed with kindness and generosity from family and friends. Gilly was able to enjoy the visit for a short period, and then went downstairs to rest in his chair while the rest of us spent more time together. He’s exhausted, and this is not surprising, given the medication he is on. It is to be expected, so I'm not frightened.

Nicole wondered if I mind someone else working in my kitchen. I usually man the show in this domain, even though I appreciate helpers, so it’s weird to stand completely back and allow others to take over (as Nicole so expertly and respectively did). But I was too tired, really to get anything together (even though I originally asked them to come for lunch). I valiantly attempted to draw the line when it came to clean-up, but my pleas fell on deaf ears. Thanks, guys, for a wonderful afternoon and the loving gestures.

During the meal the phone rang and it was nelda from the CNR program. Thi had expressed concern about Gilly's lingering lack of appetite, and she called to offer more support and ideas. She suggested i double the protein scoops for the next while duing the 5 days of chemo. She spent time on the phone with me, and offered to have me call her back if I need to between now and when we see her on Wednesday for our scheduled visit. What an amazing program we fell into!!!

Tamara came by after work to visit and wait for Max. We are all going to a party at the Zigman’s tonight to commemorate Bruce and Lea’s imminent departure (they’re moving to B.C.). I asked Tamara to help me get the lawn mower going, because Gilly adamantly refuses to allow me to cut the lawn single handedly. She promised she’d do it later, after their walk. I couldn’t believe my ears; Gilly agreed to take a walk with his two daughters (one sweet and hairy and the other quite deliciously terrific). When they returned, they took out the equipment and Tamara set out to cut the lawn, insisting I rest. I didn’t understand how she convinced him to let her take over so easily. He looked at me and explained, “It’s because you do enough.” Tamara was touched by her father’s words, and his tenderness brought tears to my eyes. How can I argue with that? In his own way, he’s still my protector. He knows that I have taken on the job of pharmacist, nutritionist, chauffeur and physiotherapist, not to mention countless other jobs I do that he used to take care of around here. He is watching out for my welfare, and this makes me feel so very deeply loved and appreciated.

The jungle of a lawn is now under control to some extent, and we’re off.

A fork in the road

I read all the labels and asked all the questions I could think of, but I cannot predict Gilly’s reaction to the chemo maintenance program. Tonight marks the beginning of a new twist in his journey; he bravely chose to turn at this fork, with little certainty as to where it will take him. He took the anti-nausea medications (Stemetil and Zofran) a few minutes ago, and will take the Temodal in a short while (he must wait 1/2 hour). Let’s all collectively send positive thoughts Gilly’s way for an easy five days ahead.

Physiotherapy went well, but I wasn’t present. I had two missions to accomplish while Gilly worked out with Thi; to purchase more protein powder (it’s sold in the JGH cafeteria) and then arrange for a primary nurse. Dr. Kavan neglected to put this in motion, but I’m onto him and the system. I marched myself up to the 8th floor (oncology nurses’ station) and requested an appointment be arranged. The next available date is July 27th, but the head nurse is at our disposal as needed until then. Chantal’s the truly caring professional who got the ball rolling by hooking us up with Naomi Kogan, the social worker. She in turn was instrumental in securing a spot for Gilly in the CNR program. I believe we’re in good hands.

Gilly enjoyed a social afternoon and evening. Tamara and Max came by to spend some time. We three were shocked to find the air conditioner running in the living room with Gilly downstairs, stripped to his waist, a fan blowing air directly towards him. Now that’s what I call a heat wave! Jerry came by a bit later and Gilly's afternoon sped by pleasantly.

We had dinner at Cheryl and Jeff’s picturesque home overlooking Montreal from a mountain top. The food was superb; I will try to recreate the salad dressing, now that I know the ingredients (one of which is Gilly’s favourite; maple syrup). Gilly ate more than usual and settled into a soft chair for a nap (while I helped myself to delectable desserts). On the way home he mentioned that he really enjoyed the evening, and added, “Even my nap was great.”

We have an eventful day planned for tomorrow, from sunrise to sunset. I always ensure that Gilly has a parachute so he is free to escape to his own space if he so desires, but there will be plenty of distraction the whole day through to help him pass the time. Andrew, Nicole and company plan to drive in to see us from Ottawa. Our dining room will fill up once again with family from near and afar.

Treasures of my childhood

Getting home and all set up after a 4 ½ day weekend is always a shlepp, so I decided to write the blog now before closing up my equipment. Otherwise it gets too late, and I get complaints from my readers; “I had to wait up so late for the blog.” So it’s not a full day account, but it will have to do. Sitting out on the balcony watching 2 kayaks pass by is only a minor distraction.

Susie called 3 times today (so far) to tell us how she’s melting rom the heat in town. Gilly had his shoes, socks and t-shirt off and ventured as far as touching the surface of the lake. He didn’t proceed any further although he admitted it was warm, but then again, he was never known to be a lake swimmer. He much prefers a heated pool. But going so far as to entertain the notion of swimming today gives a clear picture of the heat and humidity up here in the Laurentien mountains, so you can just imagine poor Susie’s plight (and ours when we reach Montreal sometime soon).

It was tough getting to sleep last night; even Gilly felt the heat. Gilly had a mediocre day today. He was listless, but managed to get one walk, his ball exercises and the weights under his belt. The final drop in Decadron dose started last night, so I expected fatigue. I swam, and swam and swam some more; the only way to stay cool.

Liylah doesn’t cry as much anymore when I swim, but she has a new habit; raiding buffets along the way. Sharon had set out a lovely cheese platter in the backyard a couple of doors down from us. Liylah had no qualms about helping herself to some cheese as she strolled by while keeping an eye on me as I swam my way along the shore.

Just before getting myself set up for blogging (a new age verb) I took a very long swim in a different direction. I passed old houses belonging to new inhabitants (renovated to varying extents). The lake resembled a mirror; shimmering blue, green and white reflections decorated the smooth surface. I allowed myself to relax, hypnotized by the magnificent sight. My mind went back in time. I pictured Lubarsky’s pier filled with kids spending their days fishing. I remembered Fred and Donnie casting poor Joey into the lake by accident (Fred promises it wasn’t on purpose and assures me that Donnie would attest to this). So many stories…so much history…Not a sign of the Lubarsky’s, Garber’s, Steinberg’s anymore…a whole row of houses with children about to make their own memories of Birch Point. This magical place is dripping with jewels from the treasure box of my childhood. Hope we get back here on Thursday. We’ll see…one day at a time.

Emotional enocunters of the best kind

Gilly actually laughed out loud last evening while watching stand-up comedy (Jeff Foxworthy, one of his all time favourite comics – sp?). Today I’d go so far as to say it was a good day. He was excited to see Donnie & Sharon from Halifax, and Debbie and Harper (Liylah’s newest canine pal) from Montreal via Taiwan. It’s been awhile, and lots of water has gone under the bridge since our last encounter. Reunions of this nature tend to have a dramatic effect on us these days; we feel a rush of emotion at first greeting.

The weather (28º inside and out) was pleasant and the company uplifting. Gilly did his standard dirt road walk twice. The second time required some prodding, I’ll admit. “Do I have to?” he asked. I took this as an invitation to insist, because it sounded much more promising than “No way.”

We had dinner on the balcony as we have for the past 3 nights, because it is so hot indoors and gorgeous outdoors. Fred and Debbie joined us. Gilly took a liking to Debbie’s spur of the moment rice recipe (she doctored up Cindy’s and Shirley’s leftovers and the result was protein rich – egg, almonds and chicken - and delicious). He had seconds!

Earlier this morning, Gilly asked, “When are we going home tomorrow?” I answered with a question (bad habit), “Why? When would you like to leave?” “Never,” he declared. I was overjoyed to hear him say this. I commented to my mother, “This really is a healing place.” It is 9:30 and he is still out on the balcony, more talkative than usual. I commented, “You seem to be having a good day.” “I am,” he confirmed.

We have one more day up here, then it’s home to face the music; chemo begins as soon as the pharmacy calls to tell us that the Temodal is in. We are taking a collective deep breath and hoping for treatment without incident.

Misty morning

We awoke to grey skies this morning, but we of the Blauer household don’t really care. It’s magnificent scenery, no matter the weather. Our friend Rosanne was rather disappointed though; the skies opened up and claps of thunder rumbled the earth beneath us on the day she chose to spend with us up north. We hope she uses her rain check soon.

Gilly was in good spirits this morning as he awaited his friends’ arrival from Montreal. He completed ball exercises and weights, then fell into a bit of a slump. He perked back up at around 4:30, and has taken two short walks with me and Liylah (of course) since.

His new complaint of the day is that he claims to have trouble breathing. I cannot get a clear picture of what he means, but it does not bother him when he walks or exerts himself. I’m guessing it is due to the intense humidity or to anxiety. I remember having trouble taking a deep breath a few years back. The doctor tested my heart and lungs, and then asked when it does NOT bother me. I reported that I felt best when snow shoveling. He diagnosed my breathing problem as ‘anxiety.’ Gilly’s problem does not appear acute and he is not out of breath in any outwardly apparent way, so I’ll keep an eye on this symptom and track the progression if it persists.

Gilly asked me to add that he’s sorry that he did visit enough with Rosanne. He said, “I was a just a little bit too zonked to spend more time with Rosanne.”

Blogal warming (Shirley’s title)

It was a real scorcher today. The lake was the main attraction for most of us. Even here up north, a cool mountain breeze was hard to come by. Birch Point gradually filled up with weekenders as the day unfolded, looking hot and bedraggled, ready to jump in the lake after sizzling all day in the city.

Gilly had what I’d call a relatively good day. The heat never bothers him. He even went so far as to remove his shirt, shoes and socks for awhile. He ate a fair bit (starting off with Grandma Shirley’s nectarine pancakes). We took a short walk after breakfast and he did a little ‘ball’ work after lunch (the bare minimum required). He stole a late afternoon nap for 45 minutes (in his estimation; 1 hour and 45 minutes in Susie’s) out on the porch while Liylah and Buddy entertained the rest of us at the beach. He has very little energy, but I’m guessing it’s the tapering of the Decadron so I’m not overly concerned.

It was hysterical to watch Liylah, quite large with white and black fur running along the shore chasing and barking at the waves, with teeny tiny Buddy following her, neck and neck, his hair as white as snow. They made a beautiful moving picture with the greenery, blue sky and bluish green water as their backdrop. Every move Liylah made, Buddy copied, yelping all the way. My mother called them Mutt and Jeff; they couldn’t be more different from one another, but have become fast friends (although Liylah’s still not clear on what all the yelping is about. She’s too busy chasing waves to care, though). They will both sleep well tonight. I may find it rather sticky; it’s that hot!

Susie and Joey were here for Shabbat. I noticed that the only thing missing (besides Gilly’s strength, of course) is our children.

Birch Point matzo ball soup for the soul

We are so fortunate to have hooked up with the CNR program. The physiotherapy is fantastic. Gilly never complains about getting up so early on Tuesday and Thursday mornings, and seems relaxed and content with Thi’s instruction. He has a positive way about him, and for some reason, Gilly moves through the exercises with determination and an air of purpose.

Thi sets aside some time to ask Gilly questions after each session. There is no doubt that he listens very carefully to the responses. Today he questioned me while Gilly was on the treadmill, and so when he spoke with Gilly later, he already knew that Gilly’s appetite has worsened, his energy level has decreased, and that he lacks motivation to do anything other than sit in his chair.. Gilly’s answers were not all that realistic, but Thi showed gentle patience, and managed to have Gilly admit the truth about all of this. He is truly in tune to Gilly’s body, spirit and mind. It is uncanny. He assured him that the cycle will kick in at some point, but it takes time. He warned him that the chemo (which will begin next week) will sap him further, but it is important to keep on working out. He suggested the possibility of coming only once during the five days of chemo, but the ball is in Gilly’s court; he decides if he can manage both sessions. He emphasized the necessity to eat, especially protein, and not simply the smoothies. There was not a trace of ‘lecture’ to his tone. I think he hypnotized us both. We left feeling understood, and in good hands.

I expressed my concern (while Gilly was on the treadmill) to Thi about my need to push Gilly. I wondered if this is still recommended, or if I should pull back. I explained that Gilly is totally unmotivated to do the exercises, and unless I remind him and strongly suggest he lifts those weights, does his ball exercises and walks, he would sit in his chair all day and nap. Aside from the fact that the tapering of decadron is causing a fair bit of this behaviour, Thi assured me that this is a common complaint. He stress the importance of pushing him to keep up the program at home.

The stereotypical ‘husband’ has to be reminded to take out the trash, mow the lawn, fix the…(you know, like dagwood, Blondie’s husband) but my fella was never that way. He has always been the polar opposite; a doer extraordinaire, which is why I hesitate to push. I believe, to some extent, that if he could, he would initiate his own training program. When he’s with Thi, I see that determination to prove to Thi that he can go longer, lift heavier weights, and so on. He smiles, and acts as if it’s ‘no sweat.’ Where he gets really thrown off is the ‘balance’ portion of the regime. It’s a major struggle. He should be using that ball everyday, religiously, but he doesn’t. It must be monumental if it threatens Gilly so. What’s holding him back most? Could it be the complex nature of the task, given his physical limitations, or is he crippled emotionally at this point, exhausted and disillusioned, because it is tiresome to spend so much time expecting all this to go away? It stands to reason that it’s a combination of both. So the plan is to continue to feed his mind, body and soul to help him climb out of his slump.

At 28º and climbing, we left the city at 1:00. Forget wheat germ today; we stopped at Lafleur’s on the way out of town. He ate every drop and licked his fingers too. Problem is, I did too! Of course a steady diet of nitrates is not the best meal plan, but I’ll do anything to whet his appetite.

He took to his chair upon arrival (it was my dad’s favourite spot too at one time, although Grandpa Haskell’s original chair is now in Yaron’s room). Liylah and I took a dip, and then we visited on the porch with my mom for the remainder of the afternoon.

Shirley’s inside making matzo balls (she figured on comfort food for obvious reasons; we’ll have to eat outdoors though, because the kitchen is ‘bleeping’ warm as a result of all the good home Jewish cooking). I’m on the porch listening to the sounds of nature, cooling off in shade with a delightful breeze blowing in my direction. I have a panoramic view of the lake from my vantage point; it’s like magic for the soul. Liylah is chasing waves along the shoreline, although there are fewer boats around during the week, thankfully. Gilly’s snoozing soundly. I’ll awaken him soon for the final meal of the day. All is as well as we can expect in Birch Point this evening.

Mutual sacrifice

Gilly awoke at 11:00 or so this morning, had breakfast, and worked with his new weights. He spent the remainder of the day resting on his chair. It’s not easy for me to push at every turn, so I let it go today, knowing he’d be back at physio tomorrow bright and early. The schedule changes coupled with the medication reduction may be playing havoc with his energy.

Gilly’s appetite waned further today. The smoothies continue to provide some satisfaction, and I fortify the mixture with all sorts of nutritious ingredients, but other than coffee, little else interests him. I hope Thi applies acupressure tomorrow. He did not do this on Tuesday because Gilly told him his appetite was fine (he seemed to have many patients all at once. He may not have had much time that day, so Gilly’s claim may have been the deciding factor). I did not reveal Gilly’s falsehood out of respect (it’s embarrassing to be contradicted). We discussed it together afterwards when Gilly wondered out loud why he did not have the acupressure. When I explained that he provided an inaccurate impression, he realized his mistake. Tomorrow I plan to ensure that Thi is clearly made aware of the dip in amount consumed and total lack of appetite. He cannot afford to eat any less than he does now.

We celebrated Yaron’s coming of age this evening by having a small family gathering (see photo by Fred). The preparations (not to mention camp laundry) kept me busy all day long. I enjoyed the diversion; it felt almost normal.

Lucky for me, Susie offered to keep me company on the drive back to camp and home again to muggy Montreal. The trip provided me with the perfect opportunity to vent. I am fortunate to have my sweet and nutty sister-in-law as a sounding board. For one thing, she has an informed perspective of what Gilly is going through; she had brain surgery many years ago, and still remembers the challenges she faced on the road to recovery. Even more importantly, she cares deeply about us all, and is willing to put herself out there, even if it means traveling for 2 hours (with a pit stop in Birch point to visit with the mad potters, mom and Anne) to do so. The trip home seemed short because of the company. Thanks, Sue!

Last night Tamara and Max kept me company, and Auntie Ruth offered tonight as well. How could I feel alone with so many arms reaching out to protect me?

On the one hand, my circumstance is not what you'd call ‘fortunate’ for obvious reasons; daily life has become quite complex. On the other hand, I consider myself privileged; many friends, family members, neighbours, colleagues, acquaintances, and professionals have shed warmth, kindness, resources, information and attention upon me. By supporting me, Gilly and my children end up benefiting as well. I am blessed, because without these people, I don’t know where we’d be.

We are getting up tres early in the morning for physio, so I best get to bed. I need to be awake and alert as I drive back up north (yes, a third trip up in three days). I hope to remain there for 4 days. Gilly admitted to me that he is going for my sake, and actually prefers to stay home. He insists we not change our plans, so we’ll go up and see how long it lasts. It is vital that we find a balance for us both. He needs me now more than ever before. I need to regenerate in order to be strong enough to continue nurturing him. We must be together at this point because his dependency is great (he’s not ready, it seems, to take charge of his own matters, even those that seem small), so we have to take turns sacrificing. I’m relieved that it is Gilly’s turn to give to me tomorrow; I need a break, and a long lake swim will do me just fine.

goodnight all

Physiotherapy at 8:45 A.M. has its merits. When we’re up and out in the early morn, the day feels much longer, which I enjoy. Gilly took a few catnaps during the afternoon to make up for those early morning hours he missed.

Gilly requested that I call Dr. Wise again, because his vision is what he describes as ‘terrible.’ I know it is an awful lot to ask, but I asked him to hang in for another couple of months, since we can expect fluctuation for a while (according to what we were told by Dr. Wise, Dr. Kavan and Dr. Sultanen). I feel as if I’m failing him; I had to explain for the umpteenth time why a new prescription would not be advisable until the situation settles a bit more (as Dr. Wise advised awhile ago). “I guess you’re right,” he agreed dejectedly. If I could do something more to ease his suffering, I would. I hope the MAB calls soon with a cancellation, because they may have some suggestions. The social worker said that they have several clients whose eyesight fluctuates, and they try to work out solutions for the particular problems people face in this area. I have great confidence in this resource. The ball is rolling, but not too quickly just yet.

Gilly now has some new weights for his home exercise program (thanks to Cheryl). Thi is gradually extending Gilly’s repertoire by adding new exercises at each visit. Our basement is beginning to resemble a gym. Now all he has to do is use the equipment ritualistically.

Picture a hill; on one side, in the upwards direction, Gilly is climbing to the top, building strength to his right side. Thi noticed a difference today in how he was able to manage the weights (more symmetrically). Tumbling down the other side is Gilly’s energy level, due to the tapering of Decadron. It’s a constant struggle to reach the top of the hill; gravity pulls him down the other side. Still, he has to push himself, in order to remain as strong as possible. Right now, I am the force behind him. My greatest wish is to have him move along on his own steam sometime soon. Have I worn this word out yet? PATIENCE, Cindy.

Our next project is to clear the perimeter of our backyard. The fence guy will not do the work unless we clear a path for him (a totally reasonable request). Will I be permitted to use the power tools? I think not! I wanted to cut the lawn today, because it is a jungle (out back especially), and all I needed was for him to either start the motor, or show me how. He’s holding out for Yaron, he told me. I guess I’m not to be trusted. It’s a big project, but I know I can accomplish it in small doses. It’ll be very hard to make headway, because the only tool I have been given license to touch is the clipper; a simple, yet rather effective hand tool. If I didn’t understand the way his mind works, I’d be downright insulted. For some reason, he has allowed Tamara to use his lawn mower in the past.

I am about to serve dinner to my beloved, because Tamara, Max and I are about to leave on our trek to Camp B’nai Brith to pick up the new man; our 18 year old son. The house will be filled with young people for a while, which always has a healing effect on Gilly.

The blog site was down earlier this evening, so I am posting late. I cannot think of an appropriate title at this hour after being in the car so long. Forgive me...

Happy 18th Yaron; Happy B-day Barb

We are now in sticky, hot muggy Montreal not because we wish to be; we have matters to attend to (appointments, fence estimates and so on). We plan to make the best of it (that is if I don’t melt in the interim). Can’t wait until Thursday!!! I miss my daily swim most of all.

No change to Gilly’s condition today. He’s trying to meet all my requests with as much enthusiasm as he can muster (drink, exercise, eat that….), but it seems (to me, anyway) that my demands are multiplying daily.

I included a photo of Gilly with John the cook from Malawi, as promised the other day. John dressed up in his ‘pastor’ outfit for the ‘snap’ as the locals call it. He was so excited with the notion of having his picture taken that he arrived the next day with his whole family, all dressed up in their Sunday best for a family photo. I sent a framed copy to him with Gilly upon his return last December.

Chipmunk's demise

Today was what I’d call a mediocre day for Gilly. He woke at a relatively decent hour (10:00), and maintained a not terrible but not terrific appetite the whole day through. I came clean about the yogourt, and he agreed to eat a small helping with one scoop of protein powder and maple syrup (not at all necessary for the rest of us, but I was advised to sweeten things, so I let him add to his heart’s content). He ended with, “Not bad, but I prefer you put it in the smoothies.” O.K. I can live with that.

His energy level was low, so we walked less, but he did some ‘ball’ exercises to compensate (finally, he agreed to try the new exercises Thi gave us on Thursday…patience, Cindy). Again, low energy is to be expected.

We spent some time with Evan and Fred, both were around for a few hours here and there, which was very nice. It was a quiet sort of weekend, but enough action to break the mundane routine of pills, smoothies and the like. We both enjoy the informal atmosphere; it allows us the chance to see and chat with country friends (some double as city friends too, right She?).

Liylah had an exciting day. Catching waves is nothing in comparison to trapping and killing her first chipmunk. We couldn’t believe our eyes. It’s amazing how a mild mannered lovable dog can transform herself into a ruthless killer at the drop of a hat. She stalked her prey under the porch all morning. When it attempted a clear getaway, Liylah pounced and killed the poor helpless creature with precision. Auntie Ruth was delighted, because Whistler usually keeps the squirrels and chipmunks from entering her house through holes in the foundation, and she won’t be here until mid-August. Gilly says there’s one less chipmunk now to worry about.

Gilly go?

Gilly perked up as soon as Evan and Co. arrived. Before retiring for the evening, he consulted with Evan regarding the loose dock and the poorly secured ‘booze and cruise’ (our pontoon boat was christened as such on the day of purchase MANY moons ago).

Gilly was up at the crack of dawn (well, 9:30 has become the crack of dawn for us these days). As soon as Evan awakened, the subject of the dock came up; Evan tethered it for the meantime. Gilly was relieved that this loose end was finally tied up. It had been weighing on him heavily for the last few weeks. Evan is his chosen savior; he had several offers for assistance, but he held out for his nephew, second in command of country home maintenance and repairs.

When Evan was young, he wondered about Gilly’s comings and goings, and watched him with tremendous curiosity. “Gilly go?” he’d ask in typical two year old telegraphic speech every time Gilly moved from one location to the next, attending to repair jobs and whatnot. He observed carefully for years (we married when he was just under a year old), and learned from the best. Since he was old enough to come up north with his friends, he started calling Gilly beforehand to ask if anything needed to be attended to. Well, this young doctor, newly engaged, has his hands full when it comes to stepping into Gilly’s shoes. Gilly told him this evening how happy he is to see him up here.

Hopefully, the other grandchildren will begin to volunteer their services. Admittedly, Robert has from time to time. Gilly doesn’t like to ask for, or even accept assistance from anyone other than Evan when it comes to country house affairs. For Evan’s sake, I hope the work is divvied up to some extent.

Gilly mentioned to Evan that Yaron is beginning to show an interest; I was glad to hear him acknowledge this. It’s not easy to measure up to Gilly’s standards when it comes to getting a job done right; Yaron is beginning to take the risk, and Gilly has been receptive. It’s unfortunate that it took this situation to force them to collaborate. I tried to foster it from the get go, but Gilly is a tough act to follow, and tends to work alone for the most part. It’s never too late for what I truly believe to be Yaron’s natural and peripherally learned talents to shine. For now, he’s at camp. Tag, Evan, you’re it!

Gilly was rather fatigued today, so the walking distance dipped to 2 miles. I asked if he feels I should push him, and he agreed that I must. I keep checking, because I despise being a pest, but I know it’s in his best interest to walk. He continues to renew my license to nudge when he agrees that I must keep at him. I desperately want to avoid having him cringe whenever I approach or open my mouth.

Dr. Sultanen explained that tapering off of Decadron may cause tiredness, so I wasn’t worried. His vision seemed worse to him, though, and this I need to monitor carefully, because if there’s a serious shift, I may have to up the dose back to what it was a couple of days ago. It’s a huge responsibility, I find. We all have good days and bad, so there’s a fine line when judging what constitutes a ‘genuine concern’ versus ‘a bad day’ versus ‘symptoms that are to be expected.’

Don’t tell Gilly, but I added a new ingredient to his smoothies; yogourt with 8% fat. He has never eaten yogourt in the 24 years I’ve known him, but he did today, unbeknownst to him. He said the smoothie was delicious. Yahoo! I found a new source of protein, rich calories and calcium, all wrapped up in one. So now I am adding protein powder, wheat germ, skim milk powder, whole milk and yogourt to the fruit mélange. It’s actually quite yummy. I lick the spoon, so I know!

I prepared 3 different types of meat for dinner (chicken from Akhavan, a pork chop with a light sprinkling of chicken spice and a pork chop marinated in Bar-B-Q sauce). He selected the one with chicken spice, and cleaned it down to the bone. I never know what he’ll be in the mood for, so variety in terms of choice is crucial. This is reasonable when I have the time, and allows me my sanity (I feel much more comfortable when he eats). I am thrilled with what he consumed today in general. When I had my babies I counted ounces; I never dreamed I’d be doing this for Gilly. I’ve learned to curb the amount of food I prepare, so I myself will not be tempted to eat enough for us both!

Gilly left the table with the same smile he arrived with this evening. I think I will fall asleep with ease tonight, knowing he is content for the meantime.

Back to the drawing board

The temperature pleased us both for once as we slept in beautiful Birch Point. It was cool with the window open; here in the country it’s on my side and apparently doesn’t create a draft in Gilly’s direction. I awoke at 9:00 and fell headfirst into a fabulous book. When i looked up it was nearly noon; I could not believe how quickly the time had passed. I made some serious noise to rouse Gilly from sleep, but the blender didn’t do the trick. I went upstairs and made an appeal in person. Even though I wasn’t too worried (Gilly usually falls asleep in his chair rather early in the evening, and because of the trip up north, he was still awake at midnight last night, so it's not surprising he was tired) I declared that enough is enough.

The weather could not have been more glorious; it hovered between 24º and 26ºC, there was not a cloud to be seen, and the breeze was truly delightful. We walked twice (maintaining the 3 mile record). I thoroughly enjoyed a long lake swim (or Lac Long swim). At my request, Liylah was taken off rescue duty, and remained was cooped up inside with her best friend for an hour. I respect myself enough to believe that I deserve some peace now and again.

Gittit shared her family’s Medjaderah recipe with me today. I remember Yuval making it in my kitchen a few years back, and so I thought that brown rice with lentils would go over well with Gilly. It is so nutritious, and best of all, it is rich in protein. I made one part seasoned up as per instructions with a dash of my own creativity, and left the other part plain to allow Gilly to choose. Gilly preferred the dish just plain and simple, rather than seasoned with onions, garlic, slivered almonds and spices. Now that we’ve finished eating, he has a stomach ache. Back to the drawing board….Someone keeps changing the rules to this game!

I used to cook to my husband’s specs with ease. Now we’re eating concoctions I’d never have thrown together in the past. It’s as if I’m cooking in a foreign country. I actually did that a year ago when we traveled together to Malawi. Gilly insisted that I teach John, the cook to prepare some of my recipes, especially soups. Whenever he worked for Central East African Railway, he stayed at a company house for weeks on end; Gilly considered John, who called him ‘Master’ and waited on him hand and foot, a lousy cook (which he really was, I must admit. Much of the food he put before us was inedible, and let’s not discuss the sanitation situation. He himself has no running water or refrigeration in his own house, so he has no clue what to do with these modern conveniences). I tried to teach him to prepare a few of Gilly’s ‘comfort foods’, but the ingredients were so different that I had to improvise in highly experimental ways, much more so that what I usually do at home (what my family likes to call oops cooking). The kitchen tools ranged from unfamiliar to dysfunctional to nonexistent. I tried so hard, because Gilly wanted John to know how to cook for him so he’d eat well during future trips to Malawi. I felt like an alien, just as I do today in my own kitchen.

When I get back to town, I’ll post a photo of John and Gilly in Malawi (pictures take too long to load here with the dial-up connection). He was a real character, and we enjoyed learning about the local culture through his eyes.

Taste-wise, Giily seems to have taken a step backwards this evening. Yesterday, he was beginning to get some pleasure from his meals. The company (or lack thereof) may be a contributing factor. Shabbat with just the two of us is not too stimulating, I suppose. When eating with our children, he smiles and listens to their banter, nibbling absentmindedly. Hopefully, when the house fills up this evening, he’ll regain what seemed last night to be a renewed appetite. Evan and Keren are expected any minute with some Israeli cousins of Keren’s. That ought to make Gilly feel right at home.

Soon to be on the road again, due north

Last night was not great. I was hot (as usual) and so had the window wide open with fans going left and right. Gilly turned off the overhead one when he came to bed, but the one pointed at me seemed reasonable to me leave on. Not so for Mr. Ice Cube. I turned it on more of an angle away from Gilly, but this did not suffice. I simply left the now stuffy room to camp out on the couch in frustration; I felt closed in. It was a cool evening, but he was unable to tolerate the window being open. He offered to sleep downstairs, but I felt it was too selfish of me to allow this. Neither one of us felt that this was a good arrangement, but what could we do?

I forgot to turn the fan off when I left the room, so Gilly got up, intending to do so himself. He fell with a crash, and hurt his arm, probably because he got up too quickly. When Yaron arrived from camp for his day off in the middle of the night, he dashed to his dad’s side to say hello and ask how he is doing. Well, Gilly was honest and said, “Not well at all. I fell awhile ago and hurt myself.” Yaron cried himself to sleep, not realizing that he was actually in no worse shape than 10 days ago (or so) when he left for camp. The fall turned out not to be disastrous in any way (Thi examined him this morning). It was just a lousy night for all 3 of us. Liylah was in heaven, though, because her Canadian idol, Yaron was home for a day.

A long medical day had we! Physiotherapy was a bit slower than last time, so we had to cut it short; we ran up to get blood tests done as previously scheduled, and then zipped down for the last part of the physiotherapy session. Thi added some Tai Chi this time, and a few more exercises with the ball to be done at home.

We waited the usual hour and a half for Dr. Kavan. Gilly used the time to work on Yoga breaths, and he fell asleep. I did not mind the wait; I had the mindset that we were in for the long haul today, so I relaxed and read a novel.

Gilly spoke to Dr. Kavan about his poor eyesight, and expressed his hope that the maintenance treatment could be postponed until his eyes improve; he wants to begins in 3 months or so.

Dr. Kavan explained that brain tissue improves very slowly; this is typical and predictable because radiation literally burns your brain and causes inflammation in the area for up to 3 to 4 months. He appealed to Gilly, “You must be patient; if you are lucky, it will improve. The tumour is not in a good position, so accept your reality, your new way of life. You are starting a transition and must learn to live your life with a chronic disease.” He told Gilly point blank that waiting for improvement to eyesight is an irrational way to make a decision, because there is no guarantee (and never was) that his vision will ever improve. Temodal is not likely to affect whether it does or does not; if anything, it MAY help to prevent further deterioration for a longer period of time. It is still very experimental, so again, there is no guarantee that it will do anything whatsoever. He feels it is in Gilly’s best interest to take the chance that it will help arrest the growth of the tumour.

I asked the forbidden question (because I am afraid of false hope): “You explained that it is possible that the Temodal will help keep the tumour under control, but I wonder if there is any chance it will shrink it?” He said it is unlikely, but not impossible. Positive thinking was advised; again he emphasized the importance of going on with life as opposed to waiting for change.

It’s WAY easier said than done, of course; we all want to give Gilly this same advice, which is why I have mustered up the resources that will allow him to rehabilitate. Gilly has to buy into this line of reasoning on his own. I plan to continue paving the way for this to occur, without pushing.

Dr. Kavan and Gilly left the final decision for two weeks’ time. He was extremely cautious not to push the decision, and was blatantly obvious in a dignified, empathetic manner. Gilly left saying he plans to resume chemo in two weeks, and Dr. Kavan filled the prescriptions and instructed us to call his office to let him know for certain. He will see Gilly again regardless on September 7th.

This time, the dose of Temodal is slightly more than double, so he will be armed with even more of the anti-nausea medication. He will be tired and perhaps feel unwell for 5 days (or it could drag for 7 days) out of 28 days. This cycle will continue for 9 to 12 months, I believe. He prescribed 3 months worth for now.

A few people have asked me why a PET scan was never done. Dr. Kavan explained that it is not necessary with this particular disease, because they know the route it takes.

The good news is that Gilly’s blood continues to be perfect, according to Dr, Kavan (what he chooses to test, of course; there are so many things we can find out from blood samples, but they do not look for everything, of course).

We picked up more whey protein, and dashed home for lunch and a quick opportune visit with Yaron. We will have dinner with our two sweethearts this evening. A real treat for us!

While sitting in Dr. Sultanen’s waiting room later in the afternoon I reminded Gilly of the statement he made way back in March; he felt as though he were watching the situation from a distance, uninvolved. I wondered if he still feels the same way. “Sometimes,” he revealed. Upon furhter probing (where you see…there were questions to encourage more explanation; remember that word finding is dfficult for Gilly). He expanded, “I feel like I’m constantly being used by the system…Violated…They’re not giving me the right answers; the ones I want to hear…I’m angry at the whole situation…with Thi, well he has a different status, a different way of running things, he can make things work…It’s the same with Nelda.”

This was my cue to help him sort out why to some extent. I asked if it is because they are able to help in a concrete way, and he agreed. I slipped in the part about the MAB possibly being able to provide certain materials to make life easier too, and he claimed he is open to what they can offer, once the ‘intake’ process is complete (the visual assessment).

I have arranged for him to speak to a professional on Monday who is trained to help people sort out their feelings. At the moment, Gilly has given me permission to pursue this path; we’ll see what Monday brings. It’s important to find the right match.

Dr. Sultanen met with us rather briefly, but he provided some interesting information. The taste of concrete is likely to be as a result of the radiation, which is a relief, because it should disappear eventually. I have noticed that Gilly has more trouble swallowing than usual, and this too was caused by radiation.

The Decadron is now being tapered further. Symptoms to look for are headaches, vision (oy vey) and arm weakness. He elaborated by adding, “Anything that doesn’t look right.” Talk about everything being relative! Fatigue and muscle pain are to be expected.

He wants to see Gilly after his next MRI to discuss the findings. We must call him as soon as it is officially scheduled. We’re still waiting for the red tape to set the procedure in motion, mainly, I suspect, because Dr. Kavan insists on using the Neuro. I could be wrong, though, because the second MRI scheduled by Dr. Mohr took 2 months or so, and we were told of the appointment the same day!

Hopeful acceptance

I just finished my first ball / elastic workout. It’s not so simple when you’re as out of shape as I am. I suspect it will have an effect if I stick with it. Gilly dabbled as well, so I hope the equipment benefits toute la famille (never was proficient at spelling in French, but I took a risk anyway).

Gilly’s appetite is picking up gradually, or else I am learning to offer and expect less. We are both feeling less stressed about his diminished intake, so I think there is some improvement. I tried marinating some meat in a sweet Bar-B-Q sauce for dinner last night, and then added some more sauce on top after cooking it for good measure. He ate the whole serving heartily and complimented me on my recipe (out of a jar, really; just the right choice of sauce).

Jennifer from the MAB was here this afternoon for 1 ½ hours. Gilly was adamant that what he wanted from her was to arrange for him to get at least 80% of his vision back; a feat she unfortunately cannot accomplish. We both tried to explain that the services offered at the MAB are rehabilitative, and that there are many different ways he can be helped, but Gilly’s expectations were high, as usual, and he would accept nothing less for now. She has put him on the waiting list for a visual assessment by the optometrist, in case there’s a cancellation. Otherwise it will be about a 3 month waiting period before he can be seen. Once they receive the report from Dr. Wise, and complete their own assessment, they can help him with suggested adaptive equipment and services (eg. adapted computer, modifications to appliances in our home, transport options for independent travel, and so on; there are many varied possibilities which could be tailored to Gilly’s particular situation).

Gilly will only be receptive to the idea of using specialized equipment and services when he has reached the stage of acceptance (cognitively and emotionally). Gilly is apparently not there yet.

We all hope that his vision will improve to the extent that he will not require these options, but for now, the wheels are in motion in terms of getting through the red tape (mostly waiting for the assessment to take place). I believe that it is best to be prepared, since the waiting period is so long and torturous when the need is at one’s doorstep. The social worker agrees; he may never need to use the services, but the paperwork will be in order if he ever does.

I often wonder, in Gilly's case, if hope serves to prevent acceptance. How do you go on if there's no hope? How do you deal with what is (accpetance) if you continue to hope for improvement? It's a catch 22 in a way...I just wonder...

In my heart of hearts, I know that there is equipment out there that he could use today that would reduce the stress he puts on his body to use his vision to complete tasks, but I cannot force the issue. It is too traumatic to do so. Suffice it to say that I have not yet played my whole hand. With all the support around us, and the resources that are out there still untapped, I know we have a double deck of Jokers left to use.

We’re off for dinner at Susie and Joey’s, so you may not hear from me again until we return to our northern roots. We will spend the entire day at the Jewish tomorrow, and then scurry back to the lake for 4 days. There’s always something to look forward to…

Deer Hunter (Title a la Tamara)

On our trip home from the country, Gilly admitted to me that the well incident set him back some. He felt it was his job to fix the problem. I assured him that in this case a well expert was required. He disagreed wholeheartedly: “I know I could have done most of it myself in the past.” To be honest, most of us who know him well would believe he really could have accomplished this. I’m guessing very few (if any) of us would even want to attempt to take such a task as this on.

We had a real heart to heart, and I hope it helped to some degree to air some of what he is harbouring; he sees himself as totally useless. I read the weight stamped on the side of the cover of the well; 135 Kilos. That’s just the cover. They had to haul over a whole new shell as well. He has such high expectations for himself. I vacillate as to whether or not I believe it’s a good thing to shoot so high. It really doesn’t matter what I think, thought, does it? It’s what he feels that counts.

I now plan to avail him of opportunities to open up to a trained professional. He finally agreed that it’s worth a try, although he doesn’t believe that talking about how he feels would do anything to solve his problem. I will do my best to make the arrangements quickly, now that he is open to it. Poor guy; he has seen so many professionals, and had so many appointments these past few months. Each one is an important piece to the puzzle, but it must make Gilly awfully dizzy trying to keep them all straight. Tomorrow he meets Jennifer, the social worker from the MAB.

Last evening we spent some time with our special friends from Philly, Leon and Elly. It’s tough for good friends to live so far away from one another under these circumstances. We became a bit nostalgic (which is not unusual, since Elly and I have been friends since high school). The conversation steered itself towards serious matters for awhile. Gilly was surprisingly talkative, and held out later than usual. The visit was therapeutic for me; it wasn’t easy to say goodbye.

I had to awaken Gilly at 7:30 A.M. in order for him to get ready for physiotherapy. It was easier than I thought. His eyes were open when I approached, and he greeted me with a smile. He had his usual breakfast, plus most of his protein smoothie. I was quite surprised since he hasn’t been up this early in I’d say 2 months.

Physiotherapy went like clockwork. He moved from one machine to another, claiming it was all pretty easy. His cardio signs were good, and he did not seem out of breath. He put his heart into each task he was asked to do; I could tell he would be feeling the pain later. He received acupressure to enhance appetite; he didn’t see what that was all about and reportedly felt nothing. Thi taught him to breath from his diaphragm (like Yoga breathing) and explained he could use this technique to meditate. He elaborated on the value of meditation and guided imagery to the healing process. He suggested that Gilly do a few exercises with a large ball at home for balance. He also mentioned using a 2 lb. weight for strengthening his right wrist, and squeezing a rubber ball to strengthen his hand (which he has been doing). He encouraged him to continue to walk as much as possible.

I dropped Gilly off at home and went to get some groceries. When I re-entered the house, I wondered why the T.V in our bedroom was on. He never sits or lies in the bedroom during the day. There he was, lying on his back with his legs hanging off the edge of the bed, eyes closed. I asked, “What happened?” “I’m breathing,” he answered.

I handed him some mini rice cakes with caramel coating and proposed he try one. “Delicious,” he commented as he munched away. I called him for lunch a few minutes later, and he arrived with the rice cakes. He ate everything on his plate (I have learned to offer small amounts so as not to overwhelm him, but he usually leaves something over).

A short while later I called down to him to say goodbye because I was on my way out to pick up Tamara and an exercise ball (I don’t let him rest, do I?). I asked, “What are you up to?” “Eating,” he replied. “You are doing what?” I asked incredulously. He laughed and repeated the answer. I wonder if Thi’s magic trick has started to work????

Both Tamara and the ball came bouncing in a bit later. Gilly was much more enthused with his daughter than he was with the new piece of equipment. Patience, Cindy. He may be worn out from the early start + physiotherapy. I’ll resume my campaign tomorrow.

The kit came with an exercise booklet, a special elastic gismo with handles on either end for stretching movements (something Thi mentioned he would show us next week), a pump and a ½ hour instructional DVD. I hope to use these features to get myself into shape.

It is so hot and muggy in town that my previously indoor but currently outdoor plants are growing in jungle-like fashion. This is not Cindy weather. I’m like the postman; no matter if it snows or rains or the sun shines bright, I always prefer Birch Point. The pictures up on top provide a view of the swamp in winter and summer. Spectacular all year round…Here’s a final Birch Point story to close this evening’s blog posting:

We were walking down the road on our way home the other day when Liylah pranced by with what looked like a very large bone. I pointed it out to Gilly, and then corrected myself, “No, maybe it’s a stick, because I see a joint.” “It’s a bone alright. Liylah, drop it,” Gilly commanded. She listened to her master, and continued on towards home. I went to have a closer look. It was the leg of a deer!!!! Apparently, she happened upon a carcass (according to one of our neighbours, it’s been there awhile) and helped herself. Oh, deer Liylah (Tamara’s phrase)!

Concrete issue

Gilly has a strong taste of concrete in his mouth, and cannot shake it no matter what he eats. The most palatable food to him right now is a smoothie; I create a different mélange of fruit each time and he claims they’re tasty and satisfying. Now that I’ve managed to get him hooked on smoothies, I must continue to seek answers to the appetite issue; he still requires meals and / or snacks in between. He does taste, albeit differently than before. In fact he has a strong distaste for certain flavours at the moment, but that horrible concrete taste won’t quit; it is always there, underlying whatever he eats.

For the last few days, he’s been troubled by the taste and smell problem even more so than his vision. All of his senses have been affected through this whole ordeal. I wonder if the taste and smell changes are related to the tumour and / or the Temodal??? It stands to reason that a bit of both could be at play.

Gilly had some work to do this morning; he rerouted the water from the well directly out of the house through a hose, so as to drain the chorine from the water system without it emptying into the septic tank (for technical reasons that I do not entirely understand, but the well guy suggested it, so Gilly dutifully followed instructions). This task may have drained his energy along with the chlorine; he’s having an afternoon nap and he’s not slept by day for quite some time now.

We took a short walk this morning, and I am packing up for our return trip home. The computer goes in the car next, so I have to sign off until next time.

Tomorrow morning is the first physiotherapy session, scheduled for 9:00 a.m. Making this appointment will be a challenge, but Gilly is not stranger to challenges; not now, nor ever before.

Cherish the luxuries

It’s a cool, windy evening (16ºC; just my kind of weather, but rather chilly for Gilly) and all is well. I notice a blue heron pump its huge wings across a cloudy sky at dusk. I am sitting in a room with 3 walls of glass from floor to ceiling (we call it the glass room); the most beautiful view in my world. Gilly walks in and turns on the light over my workspace; his pet peeve is catching me working in the dark. I tell him that it’s cool in the room because I have windows open on either side, but if he wants to keep me company we can shut them both. He says, “It’s O.K. I’m going to start a fire in the fireplace.” I’m glad he has that option. It gives him a project to work on (the wood’s a bit damp and is kept downstairs, so he goes up and down for a while to get kindling and logs; it’s good exercise, and for a motivating purpose).

As usual, the peninsula has cleared out, so the point is 'shawsh still' as Grandma Ida would say. Only Auntie Ruthie (next door) remains. Just the two of us are here in the house (with Liylah, of course). We have to flush the chorine out of the water tomorrow, because the well was repaired today and the system is currently being cleansed of bacteria. We’ll go home tomorrow late afternoon to have dinner with Elly and Leon, who have come all the way from Philly to see us.

Gilly was up and showered this morning by 9:30, so yesterday’s worries were all for naught. He walked his ‘now usual’ quota, and is none the worse for wear. His appetite improved as well (he even ate Grandma Shirley’s Goofy pancakes for breakfast; she sure misses her grandchildren when they’re not here), but still complains that everything tastes and smells the same. He enjoys his smoothies best of all, which is really terrific, since they are fortified with protein and milk; he needs both. The eyesight still plagues him.

All in all, Gilly spent his day today in significantly better shape than yesterday. This evening I plan to curl up on the couch by the fire with Gilly, Liylah and my second ‘pleasure’ book of the summer. Although that nagging feeling that something is terribly wrong weighs heavily on me, I continue to cherish the luxuries I am fortunate to have and enjoy; family, Birch Point, friends, mutual love and precious life itself.

Wellness

Gilly slept soundly in ‘his’ chair until about 5:00 A.M. this morning with music from the seventies serenading him in the background. I silently checked on his status on several occasions, and determined that he was comfortable sleeping in a seated position. The chair is practically the same one as he has at home in Montreal. He took possession of it last Sunday night, and has not given it up since.

Liylah always remains downstairs with Gilly until he comes upstairs to bed. Then she sprawls out on the sleeping bag we use as a makeshift bed in our room until someone (almost always me) awakens and moves downstairs.

Our day consisted of eating and walking, then eating and walking again. Liylah provided us with a welcome diversion. Gilly adores watching her repeatedly and energetically chase the waves. He spent a great deal of the early afternoon out of doors sitting on the porch (too cool for the dock in his estimation; admittedly, there were white caps on the lake, adding more waves than usual for Liylah to bite).

Liylah met the children next door for the first time, and they became fast friends. She is very popular on the point. We hear her name being called from all directions. She dashes off to greet anyone who approaches, but always returns, preferring to remain close to us. We cannot get over what an amazing creature she is.

It’s a good thing we were here last week to bring in the water sample; our well failed the test. I felt a little melancholy upon hearing the news, because whenever the well water failed the test (for the past 24 years), Gilly would go down into the well, clean it, and then pour Javel inside to kill the bacteria (it’s a whole procedure). This was clearly not a job for Gilly today; the top alone weighs too much for most people to lift, let alone someone whose strength is depleted, so my mother called a ‘well specialist.’ It turns out that the innards are cracked and some major work needs to be done (which Gilly could not have done anyway, even at the best of times). I think Gilly felt badly at first, but when he heard the verdict, realized he hadn’t shirked his responsibilities afterall.

This is one of many examples of work Gilly did around here in the past. The country house has been cared for by Gilly with dedication and diligence for 24 years now. The day I first brought Gilly to the country to meet my parents, in the winter of 1982, my father mentioned that there was a flood in the attic. Gilly rolled up his sleeves and together they solved the problem; it was love at first sight for Gilly and my dad (as it was for us a few weeks earlier).

Emotionally, it must be tough for Gilly, knowing he is unable to keep up his usual maintenance of the house. The house is filled with evidence of Gilly’s handiwork; repairs, inventive creations and woodwork. Many moons ago, he fixed the microwave (which we still use to this day) by doing a ‘bypass’ as my father termed it. He loved to brag about his son-in-law’s ingenuity by telling this story. Gilly acknowledges and admits he cannot do the work (at least for now), which seems to be in direct contradiction to his character. For Gilly it is a truthful confession; for us, terribly difficult to accept.

His right hand is really tied. He used to wield tremendous power as he skillfully manipulated many a tool. Yaron loved to beg his dad to make a muscle, because he had an extra bump which had formed as a result of tightening locomotive pistons. You don’t see this muscle on the arms of most people. He was exceptionally strong. The physiotherapist measured his right arm strength the other day, and it is half as strong as his left. Right arm weakness, coupled with distorted vision makes it next to impossible to complete even the simplest task, such as using tongs to lift green beans out of the pot at dinner.

I asked Gilly what’s the most important thing to put on the blog tonight and he answered, “Just say I’m not feeling very good.” I requested further clarification and he mentioned the fact that everything tastes the same. I brought some meat from Akhavan to Bar-B-Q for him tonight, knowing that, of late, he prefers their tasty marinades. He took a bite or two and refused to eat the rest, saying his taste was off. He tried some steak, but he could not eat much of that either. All he ate were vegetables (luckily there was a wide variety on the table). I’m glad he lapped up today’s smoothies with gusto. At least I know some protein was consumed.

Gilly spent a great deal of time sitting in the chair doing absolutely nothing (no T.V., no music…just sitting) late this afternoon, and continued in the same vein after his poor excuse for a dinner. A warning light went on in my head and I became a little frightened. I wondered if perhaps I should up the dose of Decadron (as Dr. Kavan had suggested, if I noticed sleepiness); he mentioned feeling weak, and fell asleep at around 8:00. I woke him to check on his condition (which I normally avoid doing unless greatly concerned) and he assured me he’s alright. My mother wonders if he’s worn out from too much walking. Gilly piped in, agreeing with this explanation. Perhaps the country air and an increased level of exercise caused his late day lethargy. I’ll sleep with one and a half eyes open tonight to ensure that this theory is accurate. He has since turned on the T.V. and is busy selecting and reselecting channels…just checked again; out for the count. It’s 10:30 P.M., so I see no need to worry at the moment.

Tomorrow is another day, and may his slumber help to restore his energy. I feel strongly that the exercise regime must continue; it’s in his best interest. Perhaps we’ll try to walk short distances more often. I’ve recently learned to offer smaller meals with frequent snacks in between. It’s an education and a half! I feel as though I’m the eager beaver sitting at the front of the class; I want to pay close attention and absorb every detail.