Marathon man

Liylah has way more bark than bite, it seems. She let out a few woofs in warning at 1:15 A.M. to alert us that police were outside. They were scouting out the area in response to an alarm that went off in a neighbour’s home. Liylah slept by the front door for the rest of the night to protect us from potential harm. The rustic environment has brought her animal instincts to the surface. Gilly slept peacefully, confident in his canine alarm system.

We had a late morning. I joined Gilly in sleeping ‘til nearly noon! My excuse was fear, which kept me up half the night. I have never seen a police officer on our land before in the middle of the night, and found it rather disturbing. I told Gilly he is free to go to sleep; I volunteered to stay up and worry for the both of us. He had no problem with this suggestion. I have made it frequently over the years since our children have become teenagers.

I re-read Nelda’s information package last night and realized that I could put more than one scoop of the protein powder into each smoothie. As a result, Gilly only had to plow through 2 (rather than 4) today, and he claims they were delicious. He ate his usual allotment of food on top of the protein enriched smoothies, and so we should begin to see the effects of the extra protein sometime soon (I sincerely hope).

Gilly took a short walk down the road this morning (well 1 P.M., morning for Gilly of late), then in late afternoon he made it all the way to the end of the road (approximately 2 miles as a return trip); truly a feat to behold.

Liylah met a new friend, Raven Boretsky) and they frolicked through the woods together. At some point Gilly turned to me and commented, “What a gorgeous day this is.” I agreed, but found it really weird that he would make this comment, since it was cold enough for me to put on a sweatshirt. I am delighted that he feels this way.

Liylah got all muddy when she walked down the road, due to her detours through the forest where the ground is mucky. Upon return, I strolled into the lake; she followed, which allowed me to wash her with very little effort. That’s the only perk I see in her habit of staying close to me when I immerse myself in the lake.

Robert just arrived from camp to have Shabbat dinner with us. My mom made Grandma Ida’s chicken, a family favourite. So I wish you all a Shabbat Shalom on this Canada Day weekend. That reminds me, “Happy Birthday, Yoav. We’ll try to call tomorrow.”

Back where we belong

Cathy, the CSSS nurse, arrived this morning to give Gilly his B12 injection. She stayed for about an hour and caught up on all the nitty gritty details since she last saw Gilly. It is a reassuring to know that she is keeping tabs on the information surrounding Gilly’s case. She asked pointed questions, indicating that she documented everything we told her last time and is doing her utmost to remain abreast of all developments.

I mentioned the CNR program, and told her I would not need the services of the nutritionist from the CSSS, because Nelda will follow Gilly very closely. Cathy suggested that I call her anyway and tell her about the program. She may be able to collaborate with Nelda at the Jewish and follow Gilly from her end.

Marie, the nutritionist and I played telephone tag for hours, until finally we reached one another and discussed the CNR program. She asked that I offer her name and number to Nelda at the Jewish next time I speak with her, and she would be happy to follow-up from her end if Nelda deems it useful. If not, she’ll just close the case. I thought that was a generous offer.

The rest of our day was filled with protein whey smoothies. I finally got the concoction to Gilly’s liking by the second dose (he needs 4 a day). I mixed the first dose mixed into apple juice, and it was not a hit by any stretch of the imagination. Later on, Gilly accompanied me to the fruit store to choose his favourite fruits of the moment (it’s almost like he’s pregnant; certain tastes and smells turn him off, yet inconsistently so). I blended two more smoothies; one for just before dinner, and another (a different fruit combo) to be consumed upon late arrival to the country. I added maple syrup for sweetness, as I was told that sweet tastes enhance appetite and Gilly adores maple syrup. It worked. He had some trouble with the final glass once we got to the country, because his taste altered sometime after dinner, but he sipped slowly, intent on finishing it to the last drop. I think he imagines himself looking like Arnold Schwartzneger (no clue how to spell this, but I gave it a shot) when all is said and done.

I called Thi today and made next week’s physiotherapy appointments for Tuesday and Thursday morning. The plan is to come home from the country on Monday evening and return on Thursday after a marathon day at the Jewish: 8:45 physiotherapy, 9:40 blood work, 10:40 Dr. Kavan (and this usually requires long wait) and finally 2:00 Dr. Sultanen. We’ll have to pack a tent, our lunch and a thermos of smoothies, I suppose.

I forgot to mention that Thi plans to try to stimulate Gilly’s appetite by working with certain pressure points. He elaborated a bit by stating that it’s similar to acupuncture but does not involve needles. I am interested to hear more about this technique next week.

We had a lovely dinner this evening at Nitai and June’s, then packed up and zoomed back to the country. I already feel more relaxed, just knowing we’re here. Liylah's relief goes without saying.

On the move

The CNR program is fantastic!!! Gilly was greeted at 3:00, right on the dot by Dr. Neil MacDonald, who heads up the program. He had us fill out a ‘sort of wellness’ questionnaire. When he read of the amount of food Gilly consumes and the extent to which he moves around during the day, the Doctor seemed genuinely concerned (which is actually a good thing, because it is obvious that he fits the profile, therefore is a candidate for the CNR program).

Dr. MacDonald interviewed us in great depth and examined Gilly thoroughly in a manner I’ve not seen before. He was clearly looking for different sorts of signs or symptoms than the other doctors have (Kavan, Mohr, Wan and Sultanen); more related to digestion perhaps, blockages??? He introduced the Dietician, Nelda Swinton and left us with her for a bit.

Nelda interviewed Gilly about his appetite and diet, and made numerous suggestions. She instructed us to purchase a particular whey protein powder (akin to the ones athletes use to build muscle) and mix 4 scoops a day into drinks or other foods. She provided reams of paper filled with information on what to do to assist a person who has lost appetite for reasons such as change in how food tastes…etc. The inormation is very specific (could have used it weeks ago, but better late than never). She also suggested Gilly take a particular multivitamin tablet daily. She paged the physiotherapist and passed us onto him next.

Thi conducted a thorough neurological examination and then used several other instruments to track blood pressure, grip strength and so on; neat gadgets totally unfamiliar to us. He worked quickly and spoke positively. His manner was enthusiastic, reassuring and ever so gentle. He concluded by stating that Gilly would receive physiotherapy twice a week, and that they would work on strengthening his right side, especially his right hand, and they would also concentrate on improving his balance. He seemed quite certain that Gilly would benefit. I am elated!! My wish has finally been granted.

Dr. MacDonald and Nelda re-entered the room and left the floor open for any questions we might have about the program. All 3 key professionals were there to field our questions. They had been so forthcoming with information, that thanking them profusely was all we could think of at the time. Gilly will be followed monthly by Nelda and Dr. MacDonald. Nelda assured us that she and Thi work Monday through Friday, so we are welcome to call at any time. I was asked to call Thi tomorrow morning to set up the physiotherapy appointments for next week.

We left the building after having been individually attended to for nearly 2 hours. This is the most impressive, state of the art operation we’ve encountered yet on our journey through the medical system. We lucked out big time. Nelda, at some point, mentioned to me that it is a good thing Dr. Kavan suggested this program. I explained that it was the social worker who responded to my plea for services, and Dr. MacDonald knew right away that it was Naomi. I get the feeling that she has a wonderful reputation. She deserves the badge of honor for creative problem solving. We’ve never actually met her, but I hope to cross paths with her one day soon to express my gratitude in person.

We dined with our sweet Tamara this evening and discussed her impending relocation. She plans to move to her new digs gradually over the summer, and the best part is that she will live VERY close to home. What a wonderful compromise; she has her freedom (and so she should at nearly 22 years of age) and we have her close by.

A heavenly sight

These are not postcards! Birch Point is truly as beautiful as I describe it, n'est pas?

Gilly is surrounded by Birch Point beauty, Liylah is pooped from catching waves.

Thanks for the daytime photos, Marvin.

It is impossible to post pictures on the blog from up north, so as soon as I arrived home in humid, dreary Montreal (jazz festival lovers would of course disagree with my adjectives), I decided to post these pictures. Afterall, we don't plan to be here for long!

Off we go to the Jewish...More news later.

Country living

There’s nothing like a rainy day in the country; a good excuse to read the day away, except for a few promenades in between the raindrops. The novel I am reading is the sort of fiction that you just cannot put down. It draws you in and takes you on a magic carpet ride of lives intertwining through different periods of history. In case you’re interested, it’s called, “behind the scenes at the museum” by Kate Atkinson.

Gilly built himself a fire and he and Liylah took refuge near the hearth. I chose a cooler spot on the other side of the house next to the screen door.

I finally had my swim today (almost all of it) during a brief sunny period. It was nothing short of delicious. Liylah was held captive in the house, unbeknownst to the fact that I was in the lake until I passed by the dock on my return. I was afraid to venture too far due to the unstable weather conditions, so I decided to double back home and travel in the other direction for a short distance so as to end up swimming the length of my usual journey. She spotted me from the window, and that was it; my voyage was cut short. Gilly let her out and she barreled down the hill to the water’s edge in full rescue mode, crying hysterically. It was SO relaxing a swim while it lasted.

Gilly maintained yesterday’s walking distance record, adding a bit more to the count. He told me that I really don’t understand how hard it is for him to walk. “I probably don’t,” I agreed, “but I’m listening and I care. Do you want me to stop encouraging you to walk? Am I bugging you too much?” He agreed that the exercise is beneficial, and because of me, he forces himself to go for a stroll despite the discomfort.

I am cautious about the kind of ‘nudging’ I do. I try to present the possibilities (like putting out a fruit platter) rather than push Gilly in the direction I know is in his best interest. I do insist he take medication within a reasonable time frame, and that food must be consumed before or during a dose of Decadron (as it is very clearly marked that it must be taken with food), but otherwise I make loose suggestions to eat and exercise at what I consider reasonable intervals. Still, I am the co-star of this drama, and my character always tries to get the leading man to do something he doesn’t really wish to do. He’s not a child that I can cajole and make the ‘undesirable’ into a game (this I have a talent for and lots of experience). I try to maintain an upbeat attitude, which at times is more of a façade. Mary Poppins taught me: A spoonful of sugar helps the medicine go down, and I so agree, but it’s hard to apply to an adult in this situation. I really find this new role hard to play sometimes.

I made an unambiguous request yesterday; once per hour, say something to me, or make a gesture. Just please do something from your end, I begged. It actually helped. Now and again I look at him and turn away in mock ‘waiting’ mode. Then he remembers and says something. Even more special are the times he walks into the room where I am reading and initiates a brief exchange. I’ve got my needs too, and I’ve made this one very clear, I believe to both of our advantage.

Gilly managed to test and change the air pressure in the water tank today. This is an excellent sign. Another promising indication that Gilly is on the mend surfaced this afternoon when he asked me when his next appointment with Dr. Wise is (the ophthalmologist). I reminded him that Dr. Wise advised we return in a few months when the swelling has subsided. It was a perfect opportunity to ask in passing, “Why, have your eyes changed?” “Yes, they’re better, so my glasses are not good enough anymore.” I’ve been down this road with Gilly before, so I suggested we wait at least a week, because they’re likely to change some more.” He retorted, “I doubt it.” I strongly recommended we wait and see, because if they do, by the time we have a new prescription filled, we’ll need to start all over again. He saw the logic. I hope that the MAB will be able to assess his visual challenges in the meantime, and perhaps propose what we do to compensate for the fluctuation in visual perception. We will see the social worker, Jennifer, from the MAB next week and perhaps she can inform us as to how reasonable it is to wish for this kind of assistance, and when we can expect the assessment to take place.

We just heard some thunder, and so I want to post this before we lose power, which is a common occurrence up here. We plan to take full advantage of the warm and cozy shelter from the storm tonight, and we’ll head home tomorrow mid-day (for as short a stint as possible).

Thank you daddy

Day by day, strength is returning. Today, Gilly initiated a stroll down the dirt road, and easily agreed to walk a second time later in the afternoon. He made it farther than I ever dreamed possible the first time out. He surpassed his first effort by nearly double the distance the second time around. He hasn’t slept a wink all day, and is in good humour. By golly, I think he’s finally re-hooked on country air.

I can’t say much about vision, because he hasn’t mentioned it in two days. I daren’t raise the topic. I suspect that no news is good news; when it really gets to him he says so.

The peninsula was quiet today. By this afternoon we were left as the sole occupants of Birch Point. It is so peaceful here during the week. Liylah had very few waves to bite. She took several trips down the road, so there was no shortage of activity. The two of us caught a few winks in the late afternoon while Gilly remained wide awake; that’s a switch (except for the dog who habitually steals daytime naps).

So here we are and here we’ll stay for at least one more day and possibly another night. The word is that we’ll be back up again for the weekend after a 2 day jaunt to town for appointments. I’m not sure if Gilly has been brainwashed to say that or if he has made this decision independently, but in the end, it amounts to the same thing.

Why the flow of water and the sound of birds chirping is so hypnotic I cannot say, but it sure is good medicine for whatever ails you. The environment magically regenerates the heart, soul and body; we need a large dose of country this summer, and it’s here for the taking. We are so very fortunate. In his own way, my daddy is still taking care of us. Birch Point was his baby, and I thank my lucky stars for his foresight.

2 days and counting

I haven’t seen Gilly look this good in ages. He was in excellent form all day today. Sitting on the dock, he was host to an array of visitors from around the lake. It is a relief for us all to see him in this state.

Liylah showed us her hound dog side today. On our walk down the road, she discovered a hedgehog, or some sort of small brown creature (hard to see it clearly, because it speedily took shelter under a car). Liylah barked for the first time ever. She tried to squeeze her large frame under the car from one side and then another, repeatedly. She kept up the barking throughout. My brother Fred tried to pull her away. She faked compliance for awhile, but ran back to the scene seconds later. He had to drag her away again, and she finally gave in. She coughed her way down the road and back. She has never barked before in all the time we’ve had her, so I guess her throat was raw.

Susie and Joe arrived with Noam and their dog, Buddy. Picture a 7 lb. Maltese yapping away at poor Liylah. All our sweet dog wants is to love and be loved. After a tense confrontation (with Buddy as the aggressor, believe it or not) they finally had a chance to get to know one another. Peace reigned over the Blauer homestead and we enjoyed a family dinner.

Gilly has managed two days in the country so far. The plan is to remain until Tuesday afternoon or mid-day on Wednesday if all goes well. It will be quiet, because the holiday weekend has drawn to a close. That’s one of the most special features of long visits to the country; the balance between action on the weekends and down time during the week.

Liylah to the rescue; NOT

Our first full day of country life was memorable. My walks down the road with Liylah brought neighbours out who I haven’t seen since our family drama began. A few such people were totally unaware of Gilly's situation. Bringing them up to speed was heart wrenching for all parties concerned. Others are ‘country friends’ who we bump into in Birch Point only; first meetings are awkward, because the subject of Gilly’s illness has to come up, and it’s hard to get past it.

Gilly slept well, and awoke feeling slightly better than the day before. He has trouble navigating on the bumpy, unpredictable terrain, but he managed to get to and from the dock twice; once after breakfast, and then again later in the afternoon.

Gilly continues to have an easier time early on in the day (which is a rather short window of opportunity, since he gets up between 10:00 and 11:00 a.m..) By about 2:30 this afternoon he went upstairs to rest, and confided in me that he wasn’t feeling himself. I was worried (partially because that’s my nature). He does not usually use this descriptor. But he made it through the rest of the day and evening without anything significant occurring. I suppose that’s a good sign. I’m especially on guard, because today is the second day on half the dose of steroids. Dr. Kavan had mentioned that if he seems sleepy, I should revert to the higher dose. The total change of location and routine came into play at exactly the same time as the reduced dose, so I have to rely on good old intuition when it comes to knowing which complaints are more serious than others.

As Gilly soaked up the sun, he watched Liylah with amusement from his place on the dock; she spent hours trying to catch the waves with her teeth as they crashed to shore. It was almost as if she was protecting us from some sort of enemy. She saw no connection between the boats and Sea Doo’s passing by and the resultant waves. It was too funny, watching her run sideways with one ear standing up, back and forth along the beach. I’ll have to bring up the video camera next time we come, because seeing it in action is priceless.

I tried to go for my first lake swim of the season, but it was cut short due to Liylah’s near fatal heroics. As soon as I started out on my swim she started to cry, seemingly worried about me (perhaps thinking I was in some kind of trouble). As she whimpered, she followed me along the shore. She swam out a bit now and again, but turned back each time as it got too deep. I was trying to make my way towards the Boretsky’s (my usual destination; about an hour’s swim there and back at a relaxed pace). By the time I reached the Freder’s (less than halfway) she got distracted and started mingling with my friends who had come outside to greet me, She made herself at home (I know why too; Lenny admitted to feeding her some bagels earlier); I noticed her moving in the direction of the opened kitchen door, so I called out to her by name. The last thing I want is for my dog to become a nuisance to friends and neighbours.

In response, she came charging down the hill towards me and literally flew off the dock into the water, seemingly attempting to save me from harm. I think she believed I was calling for help (perhaps the Dalmatian in her kicked into high gear). It was very deep. She swam towards me, and then turned around to climb back on the dock in sheer desperation. She made repeated failed attempts to pull herself up, but kept slipping. She went under water a few times.

She can swim, but is either afraid of deep water, or just unfamiliar with it. Maybe her dive into the lake yesterday was her first introduction to water??? We really don’t know.

Needless to say, I ended up rescuing her by holding her collar and escorting her towards shore. She made one more attempt at climbing onto the dock, so I grasped her collar again and brought her right to the water’s edge. I made the decision to turn back, so off we went, with Liylah continually crying and swimming out to me, yet not quite willing (or able) to reach her target. I suppose we may have to keep her in the house next time I plan to take a long swim.

Gilly had a few Birch Point visitors as he sat out on the dock. Later on Sharon and Marvin joined us for some late afternoon sunshine. I’d say Gilly’s day was social and certainly different out of what has become the ‘ordinary.’

I hope Gilly appreciates the change as much as I do. It’s hard to ask, because as soon as Marvin and Sharon walked out the door, he and Liylah fell fast asleep. They are both plum tuckered out. Liylah has never had this much exercise in her life, that’s for certain. I can just imagine what she’ll dream about tonight. My cheeks are red (my father used to love to see us kissed by the sun), the sunset is magnificent, I hear fireworks in the distance; a nice way to end a most magnificent summer’s day.

We're here because we're here because we're.....

Gilly and I could not imagine how Yaron would get all his paraphernalia into the Jeep along with me, Gilly, Liylah and all of our necessities, but he did. You all know what they say about ‘will.’ Gilly found the road trip physically grueling. Being jostled about is hard on his body.

When we arrived, the dog could not believe her good fortune. She ran like the wind, chasing the waves and greeting neighbours. We discovered she knows the dog paddle. All three of us derived tremendous pleasure in watching Liylah's release of energy as a result of her new found sense of freedom.

Gilly walked around the periphery of the house and appeared to find contentment in the surroundings; new, yet at the same time powerfully familiar. He couldn’t resist repairing the torn flag on the dock where 24 years ago we were wed.

Yaron went off to camp and Marvin and Sharon arrived soon after. The four of us (yes, you read right; even Gilly) ate dinner ravenously. There’s something about country air that does it every time.

Gilly’s vision started off on a good note this morning, in relative terms. He said, “I’m afraid to say much better.” I advised he not say anything at all; just take advantage of today’s gift. Mornings are much kinder to Gilly. We know this pattern well by now, and so it is not quite as frightening when his vision fluctuates to a more depressed state as the day transpires. My wish tonight is for Gilly to awaken to the magnificent beauty of the mountains reflected in the lake. Perhaps he’ll spot a loon on the lake as he used to, and draw it to our attention. I have never taken Laurentien scenery for granted, but my appreciation of it’s glory has deepened even more dramatically as a result of Gilly’s condition.

It’s 10:00 P.M., and my 2 companions are fast asleep after a full day of adventure. I am about to settle down for a cozy, cool night of good old country living.

Going to the country, got to get away

Photo above: Bi-Coloured Roses in Sunlight (re posting awhile back; perhaps 2 nights ago)

Photo below on the left: Flowering Pine Tree (re last night's posting).

Gilly continues to make a slow climb towards recovery. He models undying patience, but it’s not rubbing off on me.

Last night it was hot and muggy. As soon as Gilly hit the sack I switched off the air conditioning. I slept fitfully, I firmly believe, as a direct result of my physical discomfort. Whenever this happens, I awaken in the middle of a vivid dream and suddenly snap into reality. I sit bolt upright and instantaneously become conscious of my deepest worries of the moment. Usually, when I have something to fret about, I make a list of things to do to pragmatically move ahead and solve the problem that is haunting me; not so simple in this case. I am a first class passenger on Gilly’s journey; I’m not the pilot.

This reminds me of a wonderful story I like to tell in closing my talks on Inclusion, introduced to me many years ago by Tina; many thanks, my special friend. It mirrors my life at this moment. Instead of planning to have a baby, in this case I’ve made plans for our golden years together:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?” you say. “What do you mean Holland? I signed up for Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning that you didn’t get to Italy, you may never be free to enjoy the very special, very lovely things about Holland.

By Emily Pearl Kingsley, in VOICE, Ottawa Newsletter

While speaking with the social worker on Tuesday, Tamara shared her pleasure at the consistency of Gilly’s presence. She explained that her daddy has never been home for so long a period of time. We always know just where Gilly is, and he is forever within our reach. This is an example of my daughter teaching me to celebrate the beauty of Holland. Each moment is precious. Life is there for us to embrace in so many different forms; our eyes and hearts must be open in order for us to recognize the beauty.

We received a call from the social worker at the MAB today, so that wheel is now in motion. She will do a home visit on July 5th. The dietician from the CSSS also called this afternoon. Since the CNR program Gilly will enter into next Wednesday at the Jewish includes a nutrition program, I assume there will be a dietician involved, so no need for two. I’ll keep her on the hook by returning her call, but will not make an appointment until after this Wednesday, if I see we still need the support from the CSSS.

Yaron is packed and we’re good to go sometime around 2:00 tomorrow. We even have dinner plans, so there’s no turning back now (a slight exaggeration, but it does add incentive in Gilly’s eyes).

Take me home, country road

Gilly’s condition in general is beginning to improve daily, but in very small increments. I try my very hardest not to ask, but if he does not declare an improvement or lack thereof by I’d say 1:00 P.m., I ask the question outright. Usually he provides a status report by noon.

While yesterday he had trouble making it from the parking lot to Wendy’s restaurant, today he managed to walk around the block with greater vigor than he has shown over the past 6 weeks. He claims to feel extremely uncoordinated, but doesn’t appear this way to me at all. Certainly, his movements are slower, and he does lean to one side to an extent, but he works very hard to overcome his weakness, and manages to move his body symmetrically, more so than he imagines himself doing. Once in a while I hear his right foot dragging. He has to consciously lift it up in a rhythmic fashion and so it does not always elevate it high enough, but this is not constant.

The man hates to walk at the best of times, so it’s difficult to convince him to venture further than around the block. I believe he’s ready to widen his horizons a bit, but he maintains that walking distances reminds him of marching in the army, which I can appreciate. It all goes back to ‘purpose.’ He walks when he’s going from one place to another for a particular reason, not because he needs to exercise. This notion would have to be introduced as a new mindset, and Gilly’s a hard nut to crack in this regard. He moved around the garden a fair bit today, so perhaps it’s enough.

The better part of the day was spent outdoors, even after dinner for a short while. He made relatively few pit stops to his soft brown throne. The more Gilly enjoys his days (in a way that’s obvious to me), the stronger I begin to feel. With strength, comes heightened happiness. The lighter my mood, the more it pleases Gilly …and so on. It’s our circle of love and hope at its finest.

This afternoon Gilly looked over at the pine tree with the purple blossoms twisting up and around its trunk and laughed, “My beautiful purple tree.” It’s an inside joke; Gilly planted the vine that bears rich purple blossoms as a Mother’s Day gift to me some time ago (after years of admiring the plush vines growing up balconies and walls in the neighbourhood and dropping countless hints). Being the inventive gardener that he is, instead of a trellis, he used the pine tree for support. One day a passerby left a note in our mailbox asking us to call and give her the name of the beautiful green tree with purple flowers. She stood in awe of its beauty.

The plan is set; all that’s left is to carry it out. We have a mission; to drive Yaron to camp on Friday, and to test the water on Saturday (a yearly service that the lake association provides. All we need to do is provide a sample of our well water). Since my mom will be out of town, we have been asked to take the sample if we are in Birch Point. Gilly’s response to this contingent request was, “For that we’ll go.” I assured him that we could have a neighbour take care of it if needed (I don't want him to feel pressured or tricked), but he now has a clear purpose and intends to follow through. Liylah’s second dose of heart worm medication is already packed along with other sundry items. Do I seem anxious? You bet! Wait 'til Liylah realises what a lucky dog she is to have a forest to explore, chipmunks to chase and tennis balls to steal.

Hop on the bus, Gus

Again, Gilly noted a slight improvement in vision today. It fluctuates as the hours transpired, but for the first time, they went from being slightly better, to worse, and then back to slightly better.

This morning, Gilly beckoned me to come and see that the roses had finally opened to reveal their yellowy orange hue. I was busy working on the computer. He insisted that now’s the best time to take a picture. I promised to do just that, but I dilly dallied a bit and before I knew it, the rain came pouring down with a vengeance. Gilly returned to my side to ask if I had taken the photograph yet, but alas, I had not. “You better go right now before it’s too late,” he insisted. I stood in the garden and took a few shots through the raindrops, in hopes that I could still manage to do Gilly proud. Again, they're not the best photos, but sufficient to display the product of Gilly’s green thumb.

We had a family meeting with the Brad, the social worker from the CSSS today. It was not a simple matter to gather all five of us together at the same time (I actually tried to coordinate it for weeks), but unquestionabl well worth the effort. After a poignant meeting, Brad offered his card to both children to use at their discretion, and invited them to be present at his next visit. It gave both Gilly and me some solace knowing that a safe, intelligent and caring professional is there, willing to lend an ear to the kids when they need an objective listener. This is truly Brad's forte.

As soon as the meeting ended the fence materials were packed into the car and Gilly drove off with Tamara and Yaron to return the supplies. We have to start over, because apparently, no one wants to build our fence with the materials we have; they want to start from scratch. We were advised to get a refund (thanks for the tip, Harold), and luckily, we managed to do so. We are now going to search in earnest for someone to get this project up and running. It’s a real saga at this point!

I sat down to write the blog, figuring I’d be out for the evening with the LDAQ (Learning Disabilities Association of Quebec) gang for the evening. I was invited to attend the end of year party. Yaron insisted on taking his dad out to Wendy’s and treating him to dinner on the way home (role reversal, huh?), so I thought this would be a good time to work on tonight’s posting, being that I had no reason to cook.

After downloading today’s pictures, I took a quick look at the email regarding the party details and noticed that it had started 15 minutes ago. I scrambled to get dressed, and just as I moved to grab my keys from the shelf I stopped short; I realized that we are a one car family now. The 3 other Schwagers were on their way downtown to drop Tamara off at her apartment.

I dashed out of the house and walked briskly for quite some time until meeting up with a city bus. I must say I thoroughly enjoyed the ride. It was peaceful; I had time to think, and didn’t have to concern myself with traffic. I arrived about an hour late, but luckily I hadn’t missed dinner. I’m so glad I made the choice to go; I was received with such warmth by a group of wonderful, benevolent people who I truly miss. They fully understand my need to step back, and have gracefully and considerately relieved me of my duties.

The one car family will take some getting used to, especially since Yaron will soon have his license, but if I have enough time, and not too much to carry, I think I could get used to public transportation.

Gilly was fast asleep when I got home, pills not taken. I guess he still needs me!

Unfortunately, the blog refuses to accept my pictures this evening. This often happens, and I have no idea why. I'll try again tomorrow, Gill. I know how much the roses mean to you!

My calming force

Our day passed with no change to Gilly’s condition. Despite this, he remains even tempered; he’s a real sport about what he has to bear day in and day out. For once, it is Gilly keeping me on an even keel.

Now that the pressure from work has abated, I seem to allow my emotions to surface more readily. It may be a result of a build up of anxiety over time that I had to keep in check while out in the work world. The chasm between our life as it once was and our present situation has deepened. With too much on my plate, the overflow tends to drip off the edge now and again.

It is Gilly who calms me when I get riled up. Sometimes I look at him and wonder, “Who said that? Where did this new person came from?” The ‘orignal’ Gilly is still in there, I assume, but externally a different personality has emerged. I’m not sure if this is due to difference in brain functioning, or the life changing trauma he has endured; perhaps a bit of both.

Two weeks have not fully passed since the end of radiation / chemo. We were told it should take two weeks at the very least for Gilly to begin to recover from the experience. This is vital to keep in mind. Gilly refuses to lower his expectations for daily improvement to his vision, which I guess is what keeps him hopeful. Bearing in mind the doctors’ prediction helps reassure me that healing may take some time to run its course, which I guess is what keeps me hopeful.

Happy father's day

Gilly initiated a walk around the block this morning, which thrilled me to no end. For a change of pace, we made our way around the eastern block instead of our usual western route, which presented us with a whole new series of gardens to admire. The cane came along too. I asked if it makes a notable difference, and he explained that it helps with balance.

Gilly was disappointed with the lack of improvement to his vision today. He was slightly comforted by the fact that at least it didn’t slip backwards.

There was no shortage of suggested Father’s Day activities this afternoon, but Gilly was hesitant to move out of his comfort zone. The kids were at a loss as to how to make the day special. I assured them that just being there means the world to their daddy (and to me, as a byproduct).

The four of us + Liylah spent quality time together for about 8 hours, which made the day particularly enjoyable; a rare occurrence since Tamara moved downtown last summer. We had dinner at home at Gilly’s request. Tamara has a unique way of presenting food; our dinner looked as if a highly creative caterer put the meal together. Akhavan helped to make the beautiful bounty taste scrumptious. I’d say Gilly had a Happy Father’s day. The only missing element was his nap, but it was replaced with something even more precious.

I felt as if it was Mother's day, in a way. I am thrilled with the installation of our bedroom air conditioner. Today's temperatures soared, yet I managed to keep my cool, even in the city!

Birch point blues

Gilly reports a small increment of improvement in his vision today. Shhh. We’re almost afraid to say it out loud.

It’s getting increasingly more difficult for me to patiently remain in Montreal due to hot and humid conditions. Last night was a humdinger. I better remember to have Yaron install the final air conditioner in our bedroom. Gilly only arrives for his final few hours of sleep (somewhere between 3 and 4 a.m.), so I could squeeze in a few comfortable hours of air conditioned comfort beforehand.

Gilly refuses to budge; he’s just not ready to travel. I have no choice but to delay that first dive into refreshing waters of Grand Lac Long. Life could be worse; I am fortunate to have had about 45 years of mountain enjoyment, while some have never had the pleasure. Every time we travel up north, no matter the season, I am in awe of the scenery; I silently send a word of thanks to my dad for discovering Birch Point and building such a welcoming family home. Words cannot describe what that place does to my soul. I constantly marvel at how lucky I am to have access to such beauty. Patience, Cindy, it will come to be.

Gilly managed to mow the front lawn today with only one small mishap; the metal piece under the machine kissed one of our decorative bricks. Luckily, Duds happened by at just the right moment, and managed to repair it in no time. Having so many people around us who care provides us with a feeling of security.

A rose is a rose is a rose

Sitting at the breakfast table at nearly noon, Gilly quietly shared a wonderful secret: “I don’t want to say it too loud, but my eyes are a bit better today.” I have been waiting with baded breath for signs of an uphill climb; my wish has been granted.

Yesterday (I think…), Randee brought Gilly some lucky Bamboo. “5 stalks means health,” so it says on the card attached. They help “align Feng Shuei, which means to improve the flow of energy in the room.” It worked, Randella.

Gilly moved down to the garage to work on his wind chimes. He’s been struggling with this project for weeks. I asked to see the famous chimes. When he showed me the task he’s been tackling all this time, I was taken aback. Without my glasses, I could barely see the holes he expected to thread the string through. I have known for quite some time (24 years to be exact) that this man sets high expectations for himself; this is a shining example of just how high!

I asked if he’d be willing to walk around the block, and he accepted the challenge without hesitation. This is the first time in ages he’s agreed to take a walk outdoors. I took the dog's leash, and off we went. “It’s very hard to walk,” he declared. “You don’t realize how difficult this is for me.” I assured him that anything he deems tough must be so, but he does an unbelievable job of masking his fight to walk in a coordinated manner. My other half is really a doer; no task is ever completed haphazardly.

We arrived back and lazed about on the balcony for awhile, admiring the foliage. Gilly took a closer look at the roses, now in bloom (photos above don't nearly do justice to the actual beauty). “I’m so happy,” he said, as he admired the stunning display of nature at its finest. Music to my ears!!

Our trip to the country has been postponed yet again. “Let me enjoy my sight today; I have to finish some things I’ve been working on now that I can see a little bit.” I suspect his resistance has something to do with a need to reacquaint himself with his most familiar surroundings. It takes tremendous effort to feel comfortable in new environments it seems (even the country, which he used to know intricately). He’s been hugging our ‘city’ home very tightly. I plan to help loosen his grip ever so gently, because I know in my heart that he will appreciate Birch Point once he musters up the emotional and physical strength to face it. This is all supposition on my part, but I kinda know my guy by now.

We are about to meet Susie, Joey et al. and Tamara and Max at the Chinese restaurant (he and Yaron went to Lafleur's last night instead of ordering Chinese as they'd originally planned). Gilly walked into the room just as I was about to sign off: "Here's something else for your blog. I can't see. I mean I can see a bit better, but it's hard when you can't see. My walking is not straight." It's discouraging, because the slight improvement dissipated as the day progressed. Let's hope tomorrow morning will be that much clearer.

Shabbat Shalom.

No time to think of a title

I’m off to party with my Vanier colleagues. Yaron arrived home just in time to break bread with his dad. I'm quite confident that Gilly will consume more than enough this evening. The winds of change always do the trick; new dinner companion, and Chinese food. I will enjoy my evening much more knowing that Gilly has the chance to spend some quality time with Yaron.

Today was no better than yesterday in terms of sight. It’s the unknown that is most disturbing in terms of the residual effects of radiation, and we won’t know for a few months. I know I personally would be punching walls by this time if I were in his situation, but he takes it all in stride, pretty much. I have never seen him exhibit such patience.

He feels so useless, not being able to do much of anything. He refuses to allow me to take over his jobs, hoping to tackle them himself. I offered to cut the grass today and trim the hedges along the side of the house so we could walk through the jungle more easily, but he flatly refused. He insisted on greasing the chain on my bike, even though he could barely hold the spray can steady and aim at the correct location. It's great that he continues to fight for his independence. His valiant struggles eat away at my peace of mind; I want to reach out and assist, but it is not in his best interest to do so. I could never turn my back, so I watch and care deeply. What else can I do?

I detected slightly more upward curves to the sides of Gilly’s mouth today. He smiled more easily, it seemed. He’s still holding visitors at bay; he says he cannot be with people when he can’t see a thing (an exaggeration of terms, but a good indication of the severity of the problem).

Sara from the CNR program at the Jewish called this morning to set Gilly's appointment for June 28th. Physiotherapy is finally within reach. Naomi, the social worker called to confirm that we were booked and asked if there was anything else she could do. She provided her vacation and return dates and wished us well. Again, I instinctively thanked her for her kindness. "Nobody asks for this sort of thing," she replied. I thought she meant for the service, but she clarified that she was referring to Gilly's situation. She made it clear that she intends to assist us in any way she can, and urged me to reach out whener I need something. We are surrounded by competent, caring professionals, for the most part, and for that I am thankful.

The good news is we finally got the permit to build that fence, courtesy of Auntie Ruthie. Next step; look for someone to put the posts in securely and get the fence built.

I was about to sign off when I heard footsteps. "You're still here?" he asked with a grin. He bent down to plant a kiss on my lips. Now I'm rejuvenated; so little means so much. I'm off to the party.

Canine connections

Gilly was freezing this morning on his right side; a sensation that comes and goes. It hits him hard;he has always hated the cold. I suggested he take Yaron's director’s chair to the lawn and soak up some warmth from the sun, and he took me up on it.

The word ‘freezing’ reminded me that I had to remove my snow tires (thanks for pointing that out, Nitai) so off I went to attend to vehicle matters along with several other crucial messages. When I returned home 2 hours later, I found Gilly in exactly the same position. He told me later on that he had clipped some branches along the side of the house. The evidence was there on the walkway. I was glad he felt energetic enough to work in his garden, even if just for a bit.

His eyes are bothering him terribly. This weighs heavily on us both. I contacted my friend at the MAB to see if they service adults;maybe he qualifies for some adaptive equipment. Judy put me in touch with all the right people. The social worker is supposed to get back to us in the near future. I mentioned that we already have 2 social workers, but apparently the MAB has their own team of professionals. The social worker puts the procedure in motion.

I’ll admit, it is becoming more of a challenge to draw out Gilly’s smile (or I am the one growing weary?). Our plan (if the weather is right) is to get up north this weekend. This will probably revitalize us. It always has in the past. There’s nothing on earth like Birch Point. Watch out black flies; back off, because here we come!

I invited Gilly to join me at the dog run when I arrived home with our brand new doggie license, and after some hesitation on his part (he worried about lack of strength to control the dog), I convinced him to accompany me. I promised to be the one to handle Liylah (big hero that I am; it’s the other dogs I’m afraid of!). He agreed to let me take charge if he feels he cannot. He never did hand over this responsibility. There were no altercations; Liylah is obedient.

Liylah had never been to a dog run (that we know of). She kept jumping up on the benches in apparent fear of this foreign situation. It was funny to watch, because she was one of the biggest dogs there. She looked so silly; almost like a cartoon character. She whimpered for awhile, but eventually joined the gang. She was most interested in the humans; she loves to be petted and thrives on attention. I suspect Gilly enjoyed the other dogs, what little he could see of them. They approached him; He made some canine connectios, as is in his blood. I hope we will use this spot to avail ourselves of a change of scenery.

I had a meeting to attend this evening at Vanier. I called home a few times to make sure all was well. I just arrived home and discovered he had a couple of visitors in my absence. I’m glad he was not alone for too long. Tomorrow night I have another engagement, this time a faculty gathering to acknowledge retirements. The retirees are special to me, so I’d really like to be there. I have to convince myself that I’m only a call away. This time will make sure I sit with him while he eats supper before I leave. Tonight he promised to put his own together (I left it there for the taking) but he snacked instead, and I highly doubt he ate enough.

Praise for social workers

Gilly was lightheaded today and experienced periods of dizziness. His eyes were very poor and he was not able to do much at all. He had no appetite whatsoever, but thnkfully he managed to consume a decent amount of food regardless without my having to push; I had but to offer.

I suppose he’ll have days like this. It is certainly painful to watch him go through days like this, but luckily I’m able to take his hand and walk through the ordeal with him. I’m at the stage in the semester (the end!) where I can choose to work if / when the going is good, and I’m home for Gilly most always. Because we’re not running off to radiation daily, we are now settling into a very calm schedule (sometimes too relaxed, I admit). If only he could see…this would act as a springboard to all sorts of possibilities. We must remain optimistic that it is only a matter of time until his vision improves.

Yesterday I spoke to Brad from the CSSS to set up another home visit. He asked about the other visits from CSSS staff. I sang the praises of Cathy, the nurse, but spoke honestly of our disappointment with the physiotherapist. He shared that she was not present at the original team meeting. He intends to speak to the physiotherapist who was, and ask if another visit could be arranged. I thanked him for his persistence, but felt it necessary to come clean; we are pursuing physiotherapy possibilities through the social worker at the Jewish at this point. He encouraged me to continue investigating the options, and he will follow-up on his end as well.

Today, Naomi, the social worker from the Jewish called to introduce herself and apologized for not getting to me sooner. She was only made aware of our case yesterday, so I was rather impressed that she felt that one day’s wait constituted a delay. She asked several questions even though she seemed to have a very clear picture of what I am looking for and why. She spoke of a research project being conducted at the Jewish called CNR (cancer nutrition rehabilitation), and clarified that it is a wonderful program where physiotherapy is offered, but it is not geared for people with brain tumours. If Gilly has lost weight, he could be considered a candidate as an exception. I assured her that he has dropped quite a few pounds over the last few months. She promised to get back to me soon, and left me her contact numbers and hours for my reference.

Before she hung up I questioned why there was not a physiotherapy program set up for people with brain tumours, since it seems to be so crucial an aspect of recovery. She agreed that there should be, but reminded me that brain tumours make up one of many types of cancers. I sheepishly asked, “so did I just shoot my husband in the foot by having him switched from the Neuro where they deal with brain tumours only?” She suggested I call the Neuro and speak to a social worker there to find out exactly what physiotherapy services they have available. I put in a call and am still waiting for an answer. I’ll have to call back tomorrow.

She got back to me awhile later and said that se spoke to the head of the program and Gilly will be accepted as long as Dr. Kavan signs the permission form. I assured her that he is aware that Gilly needs physiotherapy (we spoke of this last Thursday), so there should be no problem with ‘permission.’ It sort of sounds like high school; needing a hall pass to use the bathroom. She explained that he has to sign as a formality, because Gilly must be considered a candidate for this sort of therapy. She gave the example of a doctor refusing because the patient has brittle bones.

She described the 2 physiotherapists on staff as ‘cracker jacks.’ It sounds like a dynamic team. Many are off at the moment (on vacation, I suppose) so we should be called in about 3 weeks time. I told her that I’m glad we got the ball rolling now, since we have to wait so long. If we had waited to meet the primary nurse on July 6th, we’d be that much more behind.

Naomi described me as a hunter and a gatherer. She praised my efforts to push for this service for Gilly. I thanked her for her kindness, but she refused to accept my gratitude. She said it needs to be done and if not for Gilly, then for someone else; people deserve the services. I rephrased my compliment by saying, “well you may not see it as kindness, but at least accept that you are a creative thinker. You made something happen for Gilly by being aware of available resources and because you are willing and able to look at the situation from a unique angle.” I explained that throughout our journey, we have met some very kind professionals (along with a couple who need work in the area of communication skills), but not all of them know how or choose to ‘think outside the box.’

She said we’d hear from her as soon as Dr. Kavan signs the permission and the paperwork is complete. I feel we have finally made some headway. It’s a step in the right direction; affirmative action.

I wanted to be sure I would not be perceived or discovered as overly pushy, so I reminded her that the social worker at the CSSS is also working on getting a physiotherapist to cover Gilly's case (I had mentioned our fiasco and my recent discussion with Brad earlier in our conversation). I offered her Brad's number. She assured me that if she thought I was guilty of doubling services, she would not be shy to say so. She encouraged me to pursue all avenues.

Both social workers have proven to be clever, genuinely empathetic and resourceful. It's comfroting to know that 2 such fabulous professionals are out there rooting for Gilly.

Nothing to do but weight

I went off to Vanier this morning to attend a couple of meetings. When I called home at 11:00, Gilly proudly reported that he had just finished breakfast and was busy lifting weights. I was pleased to hear his cheery voice, and so I took the opportunity to complete a few tasks before heading home.

The afternoon was rough for Gilly. He felt weak, and this condition lasted through to this evening. He is aware that the effects of radiation are far reaching, but he hungers for more energy (and of course better vision). I’m guessing that the feeling of weakness may be a result of lifting weights. Today was the first time he worked out in earnest. If so, it’s a ‘good’ weakness, and daily workouts will slowly help to build his muscles and strength. They are light (2 lbs. each) in comparison to the hedge trimmer he held yesterday for at least ½ hour. It may be the combination of yesterday’s exertion and today’s work out.

There have been a number of offers from friends and family to visit Gilly over the past few days. He has not been that keen to accept. It’s a great idea to call first to ensure he’s up to receiving guests.

Yaron is off babysitting for Tamara’s kitten for 3 days while she’s on a 3 day trip with her students. We’re being slowly weaned from our son, who’s off to camp late next week for the summer. Lucky we have Liylah to make a little bit of noise as she prowls around the house now and again.

All is well in that there is nothing all that new to report. It will take time to repair from the treatment, and so we must be patient and at all costs remain hopeful.

Boys and their toys

We attended a brith this morning at a relatively early hour for Gilly. He was pleased to be there, cane and all. This was the first time he went anywhere with his new prop. He finds it a more secure way to travel.

The sun emerged through the clouds just as we parked in our driveway, so I decided it is high time to trim the overgrown hedges. The city gives us a warning whenever our shrubs grow too close to the fire hydrant on our lawn. My plan was to beat them to the punch. I asked Gilly to start up the hedge trimmer or just show me how to work it. He agreed, but suggested we wait an hour for the rain drops to evaporate. I was busy in the laundry room when the phone rang. It was Sema and George, checking in as always. I wondered where Gilly had disappeared to, because his chair was vacant. I took advantage of the rare opportinity to sit in Gilly's throne and spoke for a while. Moments later I went to look for Gilly to pass him the phone and much to my surprise, there he was, trimming away.

“I thought you said we should wait 'til it dries up. I'm supposed to do that,” I declared. “Why bother?” he asked playfully. He spoke to his parents for a bit, hung up and continued where he left off. I watched him and was thrilled to note that he was managing with ease. I offered, “Let me know if you want me to take over. For now, I’ll rake the branches that fall.” “You’ll find it too heavy to lift,” he predicted, “so I’ll finish.” He cut all the hedges across the front lawn and when done, packed it in for the day. I asked if I could do hedges along the side of the house. “I’ll do it myself tomorrow,” he decided. He is very proud when it comes to his power tools! I think that as long as I’m there to ensure he is maneuvering the equipment in a coordinated manner, he’s better off taking the reigns. It makes him feel terrific, gives him a genuine purpose for using his muscles and it’s great exercise. Besides, I have enough jobs to do, so I’m not really looking for more.

The effort sucked his energy dry. He rested for the remainder of the day. “I’m weak,” he admitted. I assured him that it is because he exerted himself and he’s not used to it. He sat in his chair all afternoon and accepted pretty much every offer of food I made. I cannot complain about his appetite anymore. He seems to be doing all the right things, and ever so slowly, there is some improvement in energy level, vision (at certain points in the day) and coordination. Baby steps…

Saturday night at the movies

It’s a chilly, wet Saturday. I caught up on 3 weeks’ worth of newspapers and Gilly lounged about, content to rest in his warm and humble abode.

Late this afternoon, he ventured out to purchase some steel rope with Yaron as chauffeur. Yes, our sweet Liylah girl is a menace; she escaped last night again by gnawing on her rope (a new, heavier gage than she chewed through last time). I was out combing the streets at 1:00 A.M. when she sauntered in through the front door where Gilly stood in wait, calling her name repeatedly. You’d think she’s desperate to leave us by the number vanishing acts she’s performed, but she always returns to where she is well loved and fed. One day we may not be so lucky, so we’re now armed with heavy metal.

Gilly called upstairs for Yaron’s help in clamping on the clip which attaches to Liylah’s collar because he can no longer grip tools nor manipulate them as he used to. I brought him a ball to squeeze to bring strength back to his grip. I’d say the ball is in his court literally at this point.

Gilly and Yaron are planning to sup together while I go to the movies with Marvin and Sharon. Gilly would not appreciate watching a movie at this point. We had tentatively planned to go out for dinner, but he said quite frankly he prefers to stay home. The weather is miserable, and he’s enjoying the company of his son. I suspect that Gilly is secretly pleased to see me go, and most assuredly relieved I’d even entertain the notion. We are gradually beginning to rise out of what seemed a gloomy, unfathomable hole.

I must correct an error; Auntie Ruth will be 83 this summer. Sorry for the mistake; my mom keeps me honest.

A frican good night

Can't remember if it was Joey or Noam who came up with the title, but it wasn't me.


Gilly was disappointed to find pills next to his breakfast. He was under the impression that no more Temodal means no more pills. Wrongo Charlie. He still has to take Decadron for a while (to be tapered slowly), which necessitates Panteloc (to prevent ulcers from Decadron). The anti-seizure medication is still required (Dilantin) until further notice. The deficiency in folic acid means that he still takes Folate pills, and the B12 injections will continue monthly as well. So ‘drug holiday’ is an exaggeration of sorts. Being off of radiation and chemo is huge, but it will be quite some time before the side effects from radiation wear off completely.

Still, he had an extra swing to his step as he moved through the day. He came into my office modeling his new cane. He used it to maneuver the steps to the basement and gave it the thumbs up. When he came back upstairs I asked, “Where’s the cane?” “Oh, I left it downstairs. I only need it to go down. I’m fine coming up.” What’s wrong with this picture? We shared a hearty laugh at his predicament.

The rabbi came by at mid-day to spend some time with us. Gilly seemed to enjoy the visit. I sensed that he felt rather important. The rabbi respectfully asked if it is O.K. with Gilly that he pray for him. He humorously answered, “Whatever turns you on.” The rabbi laughed good naturedly and decided he’d take that as a ‘yes.’ Gilly welcomes all positive thoughts and forces thrown in his direction, no matter what faith or belief system they stem from.

The tightening of the banister and roller blade wheel alignment wore him out. He took things slowly for the remainder of the afternoon. He was surprised that his level of fatigue hadn’t improved. I reminded him that his body doesn’t even know there’s been a stoppage yet. The discussion took place just before what used to be his usual radiation time. The Temodal has always been taken in the evening, so he had not even had one day off as yet. The very idea of a ‘holiday’ was enough to lift his mood and give him a temporary surge of strength and motivation, but his body cannot lie; he’s still dog-tired.

I am pleased to report that Gilly’s eyes are slightly improved. The steady decline experienced over the last few weeks seems to have halted. His vision is better in the morning, and so perhaps his eyes are affected by tiredness. The fact remains that it is a very disturbing symptom to live with, and prevents him from enjoying his favourite hobbies and everyday simple tasks.

The head oncology nurse, Chantal, followed up by calling us back today. She provided contact numbers in case we have concerns or questions, and said we'd meet the primary nurse in July when we see Dr. kavan again. I thanked her, and then outlined why I feel Gilly has fallen through the cracks of the system. I told her of the move from the Montreal General to the Jewish for radiation, and how the nurses at the Neuro were not clear on his case because it was unusual to be Neuro + Jewish, which is why we switched to Jewish + Jewish. I expressed my dissatisfaction with the need to wait for Gilly to have physio, when this should have been ordered long ago. I told her about the CSSS visit, and openly hoped that a more comprehensive assessment and follow-up would take place soon. I impressed upon her that enough time has been wasted.

She responded empathetically. Apparently, Dr. Kavan has a habit of getting patients into this sort of predicament. Although he is a wonderful doctor, she revealed, he puts patients in a less than favourable situation by playing this game. We are not the first family to bring it to her attention. She assured me that she will contact the social worker at the Jewish on Monday, and a treatment plan will be put in place without delay. Chantal will have Dr. Kavan prescribe physio, as he should have already done. I feel quite confident that she will pursue this matter. I told her that I can rest easy over the wekend, knowing that she is on the case.

Shabbat dinner was more jovial than usual, and Gilly participated with gusto. He smelled the roast beef cooking in the late afternoon, and by dinnertime, his mouth was watering (thanks Grandma Shirley). Susie initiated a toast to the end of a very difficult leg of the journey, and we all waited while Gilly poured himself a glass of Coke before raising our glasses (see photo).

Gilly has been deprived of the special tea he brought back from his most recent trip to Africa. We made a congratulatory pot. When I asked Joey if he’d like some, he answered in mock annoyance, “O.K. I’ll have a frican tea.” It took us all a while to catch onto the pun. Auntie Ruth laughed hysterically when she finally figured out what we were giggling about. She continued saying ‘frican this and frican that’ until she left. For those who have never had the pleasure, Auntie Ruth is going on her 84th birthday and not in any way prone to using expressions of this nature. It was a riot!

Our home was rocking with laughter and a sense of collective relief as we enjoyed a delicious Shabbat dinner co-catered by us all.

Let's get this party started

We just dropped Tamara off after a celebratory dinner at Gilly’s new favourite restaurant; a Vietnamese place that his friend Trudy introduced him to awhile back. Gilly completed his last round of radiation today, and tonight he will take his final dose of chemo (Temodal) before his 4 week drug holiday.

We were asked to come in at 11:00 instead of 4:40 today to see Dr. Kavan. We learned this at 10:30, so we dashed over, hoping to get medical matters out of the way sooner than later.

We were ushered into the examining room immediately, then waited and waited and waited…Dr. Kavan poked his head in and apologized for the delay at about noon. He assured us he’d be back in 4 minutes. We waited and waited some more. He showed up at 12:30.

One thing Gilly has had to tolerate is the waiting game. I bring reading material, and as long as I’m not worried about missing my teaching time or being late for a meeting, I can relax and enjoy the time with Gilly. It’s much more difficult for Gilly, being that he's physically uncomfortable when out of his element.

We learned that the 42 doses we were told he would take was merely an estimate. He is to stop the same night as radiation ends. Gilly was biting at the bit to find out when he could go back to caffeine. Tomorrow!! I actually just returned home with a large can of Tim Horton’s; his favourite brand these days.

He reported that Gilly’s blood is perfect. I asked, “What does that mean? Is it where it is expected to be at this point, or really perfect?” “It’s really perfect,” he replied. The news just keeps getting better.

Dr. Kavan asked Gilly if he plans to continue with the maintenance program (Temodal for a year: once a month for 5 days, then off for 3 weeks, and so forth). Gilly asked for more details about ‘maintenance.’ The doctor explained that there is no hard evidence that the maintenance program will have any effect. The jury is still out; it will be five years before research findings will be available. Due to the location of the tumor (‘on a bad side’, as he phrased it) and because Gilly is considered young, he recommends it. Still, he was careful to admit that he does not know for certain that it will help. He highly doubts it will do any harm, but cannot give Gilly a guarantee. He suggests that Gilly make the decision in 4 weeks time when we return to see him. Gilly later told me that he plans not to think about this at all until 2 days before the appointment. At that point, he will decide.

I asked about a nurse being assigned to Gilly’s case. Now that he has moved from the Neuro to the Jewish, he needs to have a contact. Vigit bade us farewell yesterday, because she is the radio oncology nurse. Gilly is unprotected at this point (except for the CSSS, of course, but her specialty is not oncology). He is still technically being treated, so who will take over this position? Dr. Kavan let us know that he will be assigned a primary nurse.

He asked if an MRI has been scheduled, and we told him it hasn’t. He instructed us to call the Neuro to make the arrangements, and to sign a consent form on the way out. Interesting that he wanted us to be treated at the Neuro so we would have access to machines of this nature, and now that Gilly has switched to the Jewish, he is accessing the Neuro’s machinery anyway. Susie predicted this, and she was so right. Chalk another one up for yourself, Sue.

He asked many detailed questions about Gilly’s condition and documented all responses. When he reached the ‘eyes’ he showed concern for Gilly’s plight. He asked if a neurological ophthalmologist has been consulted. He listened intently and confirmed what Dr. Wise had predicted; it will be 3 to 4 months before the eyes settle into a more stable condition, due to swelling. He may lose some hearing further down the line as well.

We were advised to resume the previous dose of Decadron (tapering will begin in two weeks time) if we notice an increase in fatigue, because this would indicate swelling. I asked incredulously, “You mean we just up the dosage if we notice this symptom appear? We don’t need a new prescription to guide us?” “No, just watch for this symptom,” he directed. This is where I’d certainly want to consult with someone. Good thing I have that special 24 hour Garde Medicale number I was finally given this week by Cathy, the CSSS nurse. Until I have the name and number of the primary nurse, I will rely on this service if I am uncertain as to what to do.

He asked about walking, and Gilly told him of his discomfort due to the weakness on the right side of his body. He explained that after some physio, this may improve. This was my cue! I asked how we could access physiotherapy, and he suggested the CLSC (no one uses the correct letters yet!). I told him briefly about the visit yesterday, and mentioned that there was no expected follow-up. He wrote this down and suggested I bring this up with the primary nurse so that there will be follow-up. Perhaps this will come to be. I intend to keep pushing.

Dr. Kavan is a very busy fellow, and we had to wait a long time to see him, but he was patient, answered all questions, asked excellent ones himself and seemed to take a sincere interest in how Gilly is doing. He apologized again for the long wait, and bid us goodbye, congratulating Gilly on his final day of treatment on his way out.

I mentioned the other day that Hope and Cope was cold in every sense of the word. The atmosphere warmed up as soon as we emerged from the examining room. We were greeted affectionately by Donna, a Birch Point ally. She couldn’t do enough to make us feel welcome and supported.

On the way out, we had to stop at the desk to make an appointment for next time. There was a line-up, so I encouraged Gilly to zip over to the radiation department and see if they’d take him 2 hours early, to avoid the extra trip home and back. I was able to accomplish some of the tasks, but was asked to return to complete the rest later.

I found Gilly gladly waiting for ½ hour so as to be seen 1 ½ hours earlier. In the meantime, I made the appointment with Dr. Sultanen for 4 weeks as instructed yesterday by Dr. Wan, and luckily managed to get one for the same day as Dr. Kavan’s, a few hours later. This is one perk to being seen at the Jewish only.

Upon return to Hope and Cope on the 7th floor, I asked the clever, pleasant and proactive secretary, Sehnaz, my new friend, if she could see about a primary nurse. Long story short, she went to bat for us and insisted they assign one to Gilly now. You see, we were falling through the cracks again; he is new to the Jewish (oncology department) and not on chemo at the moment, so the plan is to wait a month and begin when he sees Dr. Kavan in a moth's time IF he begins the maintenance program. I want a contact person today, and would like to push for comprehensive physiotherapy. The sooner I make the request, the faster the wheels turn. Red tape gets the wheel all sticky which slows it down considerably, but I plan to cut it at its source. Luckily, Sehnaz is on my team.

The head nurse who will assign a primary nurse to Gilly was in a meeting. Since we’d been at the Jewish for nearly 4 hours at this point, it was time to go home and wait for a call. Gilly needed a comfortable place to rest, so off we went. I will follow up tomorrow.

Liylah was put out on her rope this afternoon, and was subsequently dragged home by our back door neighbor by the scruff of her neck. That escape artist pulled her head right out of her collar and ran off to frolic on Davies Avenue. Luckily, this woman adores Liylah and dashed to her rescue, fearing she would be hurt by a motor vehicle. She sent regards to Gilly and suggested I tighten the collar. The chronicles of Liylah would make quite a hefty volume by now. Butterscotch never got into so much mischief!

Gilly just took the last dose, and we both heaved a sigh of relief. Tim is on the counter waiting to be brewed first thing in the morning. Coke will be served for Shabbat dinner. It's party time, and our vacation begins right now!

Healthy attitude

Our day got off to a pleasant start. We were expecting the physiotherapist at 10:00, so there was no time for lounging about. Gilly’s mood was great. His bright smile contagiously threw a ray of sunshine in my direction.

Anna arrived a few moments ahead of schedule, so by the time I emerged from the shower, she had already measured Gilly for a walker, and then a cane. She introduced herself to me as I entered the living room, and explained that the walker is not necessary, but the cane is recommended for greater stability. Gilly had already opened his mind to the idea of a cane when Cathy, the CSSS nurse was here, so I was glad to be shown the proper way to measure for height. I had asked her to leave the walker in the car when I spoke to her on the phone last week, explaining that it is a matter of dignity. I advised her not to bring it out unless she deems it necessary (which in the end she clearly felt it wasn’t). ERROR #1

She suggested putting lifts on the legs of our couches, so that getting out would be easier, but Gilly balked at the idea. “I have no trouble getting up, and I like to sit on my chair downstairs anyhow.” She took a stance that her recommendation would help anyone having to get up from the couch, not just him. She used this line of reasoning for many of her proposals, but Gilly wasn’t buying. He was onto her from the get go.

She forged ahead on her mission to ‘adapt’ our world by insisting on examining all of our household facilities. She moved down the first part of the staircase towards the basement and vehemently insisted he needs handrails at the top. "It's not just for you; it's a lawsuit waiting to happen," she said in jest. I would have to wholeheartedly agree with the recommendation, but I could see that her manner was getting Gilly’s back up in a way that I’ve not seen in recent months (since his illness was discovered). Less than a year ago, he redid those stairs himself and did a beautiful job. This was not working out the way I had envisioned it.

She entered his ‘private’ bathroom in the basement, and told him that if he needs the CLSC to come and bathe him, he’ll have to get rid of the shower doors and get a special bench…etc. This was a fatal error on her part, in my opinion (ERROR #2). She lost his confidence completely at that moment. Why did she start at the worst case scenario? She forgot to get to know him even just a little bit before jumping to what she apparently perceives as an inevitable circumstance.

This scenario may never come to be. If he should happen to reach that stage, we have a bathtub upstairs that he could bathe in that has no shower doors at all. She really could appraqoch the situation more creatively before tearing apart a person’s treasured domain. For now, he is nowhere near the stage of dependency in this refard, so why mention it at the outset of the visit? I found this to be a de-motivating approach, and you can just imagine what was running around Gilly’s mind.

She approached our bedroom and made light of the fact that she hardly knows him, and she’s already in his bedroom. Wrong audience for her humour. He demonstrated how he climbs in and out with ease upon her request. Again, she harped on the future by warning he may need a guardrail. ERROR #3

So it went, to the point that I wished she would make a quick exit. She finally sat down and asked what we need from her. Gilly answered, “Nothing. I’m fine.” She looked at me, and I gingerly replied, “I was hoping you could provide some suggestions to assist him in strengthening the right side of his body." It was at this point that she started asking questions about his physical condition. Bass ackwards, lady!!!

“Just go to an exercise class,” she stated plainly. “Or use a gym. Use it or lose it,” she laughed. ERROR #4. He looked at her as if to say, “You and what army?” He voiced his refusal to do anything of that nature. I tried to clue her into his personality and hobbies he enjoyed in the past, clarifying the reason I had asked for an O.T. to visit and provide some suggestions. I explained that he is not one to ‘exercise’ for the sake of ‘exercise.’ He’s a practical person, and believes that all activities need to have a purpose. He enjoys working hard, and he has never had the need to exercise outside of daily, physical activities. I asked if she could help him return to some of his favourite past times with adaptive equipment or ideas (like gardening, for instance) so as to promote more daily movement.

She turned to Gilly and asked, “What do YOU want?” He held up his right hand and described it as his main tool, which now has no strength and lacks coordination. This prevents him from opening jars, squeezing pliers…everything basically that requires hand movement or strength.

I reminded her about his brain tumor, appealing to her by stating that with proper exercises, perhaps other parts of his brain could take over some of the functions he has lost; perhaps they could somehow be activated / stimulated. I thought to myself, "Do I need to explain this to her?" She suddenly took an interest in my background. I explained that in my experience, O.T.’s and physiotherapists have done wonders for children with special needs. I’ve seen them in action and they have marvelous ideas. I outlined the reason I thought a person with her training should be able to help in this case, being that the brain stem is involved.

I asked if she had some specific exercises to recommend. She finally gave him a few exercises to do at home. He will need some weights and a ball (or something of that nature) to squeeze. She handed me a sheet with the names of suppliers for specialized equipment and off she went.

Gilly asked, “What did you think?” “I was not impressed.” I admitted apologetically. I felt responsible for this fiasco. “I’m glad to hear you say that,” he answered with relief. "I didn’t find her helpful at all.” I explained that we may have to go privately at this point, since the ‘free be’ was no bargain at all.

I will investigate further, to determine if I am correct in assuming that he needs an informed expert to follow him at least for the time being, to get him started on a productive exercise regime. I haven’t given up on the idea of an O.T. who could conceivably be creative in suggesting adaptations that may allow him to pursue some of his favourite past times in his current condition in a way that he would find gratifying.

Anna may be skilled as a physiotherapist / O.T., but she failed to reach her target. She missed the mark due to poor ‘people skills’ in my view. Getting to know Gilly first, just knowing this wonderful man even a wee bit may have set the stage for a better working relationship. Just a thought…

One positive result did come of Anna’s visit, though; a paradigm shift (Uncle Butch, Joey and Noam may giggle at my use of this term, but by golly it fits!). Gilly has been relaxing a lot (admittedly, to some extent as a necessity) because he is waiting for the treatment to be done so he can resume normal activities. He has the image of total recovery in the very near future (even though he has a year of chemo to come). Miracles do happen; people told they’ll never walk again (like my Grandpa Munia) end up defeating the odds. However, he cannot wait for the ‘perfect’ condition to return before getting busy again. He needs to become busier than he is now, and work directly towards ameliorating his physical limitations as best he can. He must begin to take control; keep his muscles limber and strengthen weak areas wherever possible. He opened up to this new way of thinking today, and plans to do the exercises she suggested.

The nurse who visited awhile back mentioned that Gilly may be ‘borderline depressed,’ which means on the verge of a depression. Apparently, this condition is very difficult to diagnose. His lack of usual feistiness and his unusual willingness to be idle (which is not in any stretch of the imagination close to his typical behaviour) could be a sign, she explained. I stored this information in the far reaches of my mind and never brought it up with anyone. Today I realized that Gilly's potential state of borderline depression was challenged. I believe he rose to the occasion and made the decision to take control of his fate by being proactive. Smiling and good humour is unquestionably vital, but affirmative action alongside this positive outlook is a winning combination.

Sheryl is thrilled to give up her adjustable cane and weights. It means she’s no longer in need of these supports (she broke her knee cap a few months ago, but has done her homework and so has moved onto heavier equipment). Thanks She!

For the better part of the early afternoon, Gilly sat in Yaron’s director’s chair on the front lawn and gave me step-by-step planting instructions. He couldn’t resist helping, but I discouraged it, since it requires bending his head downwards. He commended me on a job well done (a new habit I’m quite fond of). I now understand what attracts people to gardening (although my back is not fond of it, and I feel a rash coming on; what a kvetch, eh?).

We went off to have his blood taken on the seventh floor. It came as no surprise to discover that Halima neglected to give her penciled in change of blood test appointment to the staff. After parking the car I arrived to find Gilly on his way out with a dejected look on his face. I marched up to the desk and asked what the story was. I’m really getting pushy these days. I informed them that the radiation was changed for tomorrow to accommodate Dr. Kavan’s time, and questioned how the blood could be taken tomorrow without changing the radiation appointment yet again. The lady at the desk is clearly a divergent thinker; she sent us down to the test center, and blood work was done without delay. I took her name, and assured her that I plan to knock on her door as needed because she's on the ball. She smiled knowingly.

After the second to last dose of radiation (yahoo!!!), we met with Dr. Wan. He told us to make an appointment for 4 weeks from today, and gently assured Gilly he’d begin to feel better in a couple of weeks.

When we got home I stood on Phil and Debbie's doorstep across the street for a quick viewing of their sweet Elizabeth. I told them about Liylah and her weird shedding schedule. She shed her white fur first, and now she's dropping hair left and right mainly from her large black spot. Debbie wondered if it's because she's a mix. An interesting explanation I would never have thought of. Phil went on to suggest Omega - 3 pills to reduce shedding. I walked into the house and Gilly informed that Liylah had taken the margarine container from the counter (I guess I left it out accidentally) and took it to bed. On the cover of the container, it said Healthy Attitude with Omega - 3. I guess she's prone to self-medicating.

Last day tomorrow….What will we ever do with our time?

A red letter day

This day just keeps on getting better! We received a breathless call from Grandma Shirley at mid-day informing us of news that came as no surprise, but had a powerful impact on us regardless; Evan found a romantic spot on the beaches of Tel Aviv to present Keren with an engagement ring and ask her for her hand in marriage. We immediately dialed Keren’s cell and congratulated them while the wondrous news flowed through phone lines around the world, forming tributaries all over the place. I couldn’t contain my sobs of joy. Gilly and Yaron were perplexed by my reaction; they found this behaviour rather absurd. It was the best release of intense emotion I’ve had in a long time. These two are lucky to have found one another; they’re both very special people. I immediately dialed Keren’s parents’ number to welcome them to our family. I met them for the first time last Saturday evening at Evan’s party. Shoshana is elated, and thrilled to know that she now has family in Montreal.

Gilly directed Yaron through the installation of 2 of our 3 air conditioners! Gilly initiated the procedure, and followed it through to completion. The two of them ran off to Play it Again Sports together and finalized the purchase of Yaron’s long awaited roller blade wheels. It was a father and son kind of day. I overheard Gilly call Yaron ‘sweetie’ on a few occasions.

Gilly did not feel cold at all today, and mentioned at some point that his eyes are a bit better as well. This is promising news, but not as thrilling as what we discovered later on…in the waiting at the Jewish, we were advised to let the technician know that we have an appointment on Thursday with Dr. Kavan, and so we need to have radiation an hour earlier. Gilly made the request, and was bowled over to learn that Thursday is his final radiation session. We thought six weeks meant 6 full weeks’ worth of weekdays, adding up to 30. The technician showed us the chart; it said 28 days!!!!! We are thrilled beyond belief, because the whole shebang has been shortened by 4 days. We thought we had to wait until Monday (since there was a Monday holiday) but we were mistaken. This is cause for celebration. All the way home in the car, I kept repeating, “I can’t believe our good fortune today. Our world became brighter.”

Overall, Gilly looked terrific today. He had a few set goals to accomplish, and managed to reach them all. Our next joint project involves directing me through the planting of annuals, still sitting on the newly grown in lawn across from the magnificent poppies that have reached their peak (see photo). Gilly will never need medical marijuana by the looks of those luscious blossoms. Remember what happened to Dorothy and her friends on the way to Oz?

New taste sensation

Gilly’s on a two day cycle. Today was a better day than yesterday. He managed to consume a decent number of calories in small increments, which really isn’t a bad way to eat, and is still moving about at this hour, claiming he feels he needs to move around (not typical evening behaviour these days).

Gilly experiences a period of wakefulness of late that comes on after taking Temodal late at night. This is a newly discovered window of opportunity for snacking, and so it places less stress on eating during the day. I myself sleep through his new midnight snacking habit, but see the remnants in the morning. It comforts me to know that he developed an appetite, and was satiated, all in my absence.

The EEG took place right on schedule, and Gilly was told by the technician that we would have results in three days time. We returned home, and Gilly relaxed.

I wondered why Dr. Kavan’s receptionist at the Jewish never called to give us our next appointment, even though I arranged to have Gilly’s files sent to her from the Neuro as she’d instructed me to do 3 weeks ago. This morning I decided to ring her up and inquire. This is the week that Dr. Kavan should see Gilly, if the pattern of every three weeks is to continue. Halima claimed never to have received the papers, but promised to look into it. She suggested I come see her later in the day since we’d be at the Jewish (twice today). She made a comment about the fact that she has already had to speak to this woman today about failing to send things she’s asked for.

While Gilly was having the EEG I went up to the 7th floor (brand new oncology department) to settle the matter with this gal face to face. She said she just received the fax from the Neuro, and then she asked to see Gilly’s hospital card. “He has it with him. I’ll come back when he’s done,” I offered. “No, just give me his name….Oh, I have his appointment with a note to call back. I must have called but you didn’t return the call.”

Now this is a ridiculous untruth. I have been anxiously awaiting the call for this appointment, knowing he completes the radiation on Monday. I'm dying to know for sure exactly what are the next set of instructions???? I could not understand why there has been no response from Dr. Kavan’s end since May 17th when we last saw him. When I called this woman originally to make the appointment she jumped down my throat and put down Dr. Kavan in a nasty manner, telling tales out of school, “He knows the rules.”

“He is to come on Thursday at 4:00,” she ordered. “But he has radiation at 4:00,” I gasped. “That’s too bad. They have to change it. I was going to have him see Dr. Kavan next week because I’m booked up, but now I see your husband already has an appointment for this week, so you must take it,” she commanded rudely.

My insides were churning. It’s not so easy to change radiation time at the last minute. I silently prayed this woman’s demand could actually be accommodated downstairs in the radiation department. If not, what would we do? I feel we need to know exactly what comes next before the end. Dr. Kavan originally said they’d check the blood once a week, but in 6 weeks it was done only twice through the radiation department, and this was initiated by me. Has Dr. Kavan ever even seen the results? Do the counts determine what’s in store down the line???? For the short term??? Long term??? How long does he remain on Decadron? Who decides??? Does the radiation oncology team drop Gilly after Monday except for maybe a follow-up appointment or two???? They know him best at this point. It’s an alienating experience to be so close to the end of one branch of the ‘medical family’, and not know those from the other side, really. Who will take a genuine interest?

She handed me the appointment slip, and I noticed it said 4:40. Another blunder on her part, and one that caused me grief for no reason. This appointment is feasible to honor. I realized then and there that she is highly disorganized. She never called me in the first place, and lied when she said she hadn’t received the papers (or was grossly mistaken), because she had made the appointment before I called this morning. It was there on the computer. She wields tremendous power over our lives. How unsettling.

The new Oncology wing is attractively decorated, but not what I’d call ‘warm’ in either sense of the term. I made a mental note to ensure Gilly dresses for the chill (or was that just my imagination, based on the cold reception I got over the phone and in person?).

Last night, Jerry suggested taking Gilly to lunch en route to radiation, however Gilly begged off this afternoon due to fatigue. Later on in the day I mentioned to Gilly that I overheard him postpone his lunch date. He said, “Yeah, I wasn’t in the mood to eat at Schwartz’s.” I probed further, “What are you in the mood for?” “Oh, something different, I guess,” he revealed. “Like what?” I persisted. “Maybe Chinese, Vietnamese, anything I haven’t eaten recently,” he divulged. “Well, Gilly, you could have mentioned that to Jerry. He was just making a suggestion to give you a chance to eat something special in a new environment,” I explained. “Oh,” he answered. “I didn’t think of that.”

I asked if he’d like Renée to come over for dinner (as planned), or if he’d prefer that the three of eat out at a restaurant. He replied, “I’d like to eat some Chinese food, but I’m not much company these days.” I reminded him that he’s the same ‘not much company’ at home as he would be in a restaurant, and we shared a laugh. We made plans to dine out, and it was like a breath of fresh air to break from our weeknight routine. Renée was not nearly as impressed with the unique experience as we were. Each dish we ordered titillated our palates with flavours unlike those present in the food I tend to prepare at home. Gilly diplomatically reiterated that it has nothing to do with my cooking; he needs to taste new foods. Gilly derived great pleasure in spending the evening out with our friend from Ottawa who we rarely have a chance to see. I reaped the benefits in more ways than one.

Good fence sense

Gilly was greeted with a headache first thing this morning, much like yesterday. He assured me on both occasions that it is not a pounding one. He took some Tylenol, and did not have to take another dose. Dr. Wan explained that the type of headache I should worry about would be blatantly obvious; there would be no question. Today did not seem acute.

The fatigue is extreme at this stage, but he managed to rise from bed before me this morning, made himself a pot of coffee and then spoiled me with a fresh caffeinated batch just for me.

It was an action packed day at the Schwager homestead. Cathy and Uncle Butch arrived first, soon followed by Auntie Ruth John, Stacey, Justin and Kyle. The food fest was about to begin.

John called ahead on Friday, and packed his clothes carefully for a Sunday morning fence raising, weather permitting. The sun broke through signaling Harold, who showed up soon after to help get the project started. There was one kink in the works; no instructions. A trip to Rona Hardware helped the crew realise that the fence idea requires further investigation before work can commence.

In the meantime, a crowd was forming; Joey, Susie and Noam arrived with more bagels, followed by Fred and Debbie moments later laden with packages of their own. We ate and discussed fence options among many other topics. As usual, there were many varied conversations going on. Lots of love and good spirit was shared.

Gilly took part in some of the discussion, more so than usual, I’d say (see photo). He ate very little, however he did nibble distractedly now and again, which is why eating in company is so important.

Yaron slept through the festivities, which would be nothing short of miraculous for most of us, but teenagers and their sleep patterns form a class all their own.

Gilly retired to his comfort zone as the day progressed, but chose to ascend each time new company arrived. Grandma Shirley came by to top off her day, Melanie and Joseph brought warm smiles and a delicious dose of protein, and Aviyam, Cynthia and Ezra passed by to say hi and share joyous news hot off the press; Ronen was born to Elana and Duds. I just got off the phone with Duds, and all 5 are doing well. A hearty Mazel Tov to the Friedman clan.

Joey’s dog Buddy met Liylah face to face for the first time. Kissing cousins they’ll never be. Buddy seems not to believe that such a large creature could be so gentle.

Tamara scooted in for a quick kiss and the day drew to a close at about 7:00 P.M.

Tomorrow it is back to real world; EEG at 11:30 and radiation at 4:00. We hope to sup with Renée if Gilly is up to it.