The guy's got no taste

My sinuses are no better today than yesterday, and the heat coupled with extreme humidity adds to my discomfort. Luckily my friend Judy gave me a tip: Take the magic bag from the freezer and drape it over you. This is a cloth bag filled with some sort of grain that Gilly once bought me for Mother’s Day. It can be warmed in the microwave or cooled in the freezer, depending on what ails you. Well, Yaron slept out last night, so I nestled down in his room to keep germs far from Gilly, and the magic bag kept me company. Thanks Judy. It did the trick. Now if I can just get rid of my germs…oh well, I guess we can’t ask for everything all at once.

I hope it doesn’t sound like I’m kvetching (although that is exactly what I’m doing), but I find myself getting into ridiculous pickles these days. Now and again, maybe 3 times a year, I get a weird rash on one of my fingers. It’s always creeps along the same finger; gradually appearing and itching like crazy over a course of a week or so, and then it mysteriously disappears. I use an over the counter steroid cream, because I never seem to have time to go and see the doctor when it is at it’s peak of itchy. Now imagine that I have this tremendous itch on my right hand, and I have this cold. So every time I blow my nose, I have to wash my hands. When I touch things that I hand to Gilly, I use a special disinfectant (waterless soap of sorts). Talk about a raw, itchy rash. Ayayaya.

We saw Dr. Sultanem today. Apparently he finally tracked down the radiologist who saw that ‘difference’ on the MRI about 4 weeks or so ago. He confirmed that there is no apparent change. When they do the MRI they take information in 3 mm. slices. The second time, the slices were in slightly different locations, which explains the slight difference that precipitated our panic. This is good news. Do I fully comprehend? Not really, but I have a general understanding, and that’s good enough for me at this point.

Dr. Wan met with us for a longer period of time. Gilly reported that his cold sensation is driving him around the bend. Dr. Wan looked at his chart quizzically. “It’s unusual, but not unreasonable,” and admitted he does not have a good explanation. Gilly added that his vision is deteriorating as well, and that he has now lost his appetite. Dr. Wan decided to double his dose of Decadron. It is a very low dose, and there could be swelling causing worsening of his symptoms (the feeling of cold and visual problems). He explained that there are short and long term repercussions from steroids. He plans to keep him on the higher dose for the short term only. One of the side effects could be increased appetite, which may work well in Gilly’s favour. The other is sleeplessness (which he experienced in the hospital between the two surgeries). I noticed a distinct difference in Gilly as soon as the tapering of Decadron started, so perhaps this will help, by adding a little drug induced energy???

He asked what medications Gilly is on. I always wait for Gilly to answer, but he looks to me when he cannot access or doesn’t know the information. I was given the proverbial nod, so I listed them, doses and all. I turned to the doctor and explained that I only answer when Gilly asks me to, thinking he assumes I’m a pushy wife who never allows her husband a chance to answer for himself. He answered, “That’s enough medication, don’t you think?” The doctor looked at Gilly as he spoke, even though I offered the information. I find this to be highly respectful to Gilly, the patient. I do not mind remaining in the background until I’m called upon again to supply information.

I asked about the ideal time frame between Decadron doses, and the doctor provided helpful details. He assured me that they could be taken as close as 6 hours apart if it fits into our meal schedule. Most importantly, he must take it with food, and so whenever he has breakfast and supper, it must be taken. This was a relief, because I was told it should be no less than 10 hours apart, and I was trying to make miracles happen.

As for appetite, Gilly reports that all food seems to taste the same. He gets no real flavour. He doesn’t want chicken anymore (which is one of his staple foods) and finds it most difficult to eat in the evening. I asked if a dietician with knowledge about the effects of the mixture of chemicals Gilly is taking could help sort this problem out. Dr. Wan said that everyone reacts in his / her own unique way, and suggests we explore what foods tempt him. “Then stick with what works,” he advised. It’s trial and error.

Waiting in the hallway for his turn for radation therapy, Gilly admitted that he wants to taste something different. I asked, “You mean something I personally have not cooked?” “Yes,” he replied softly. Go know!!! Here I am thinking that homemade is best, and most nourishing, and he wants anything I haven’t cooked. If I didn’t adore him, I’d actually want to crown the guy!! He assured me that it has nothing to do with my cooking, and that it is something he doesn’t understand. So the Blog is earlier this evening, because we ordered from Carvelli’s. Easier for me, and if it helps, I’m in for the long haul. It’s too hot to turn on an oven anyhow! Whatever keeps him going. I have a freezer full of delectable foods that I put all my love into; they’ll wait for the return of the taste buds.

Dr. Wan was up and moving towards the door when I bent his ear for one more question, apologizing for my persistence. He seemed to be in a hurry to leave. I wanted to know if it’s O.K. to eat after the Temodal, because Gilly told me this morning that he gets hungry in the middle of the night, but is afraid to eat. He gave Gilly the go ahead to eat all he wants, but to wait 1 hour after taking the chemo. He turned to me as he left the room to say, “Don’t ever stop asking your questions.” I found this to be very reassuring. These doctors are extremely busy, so when I ask question after question (I store them up from one visit to the next), I feel I am impinging on their time. It is a relief to know that he is busy, yet honors my apparent need to get the information. He understands my purpose and respects that.

I’d say mid-paragraph (the one above) the food arrived. Soon after he took his first bite, Gilly looked at me and dejectedly confessed that Carvelli’s chicken is no better. If I didn’t know in my heart that my husband really does enjoy my cooking, I may have felt a twinge of relief. Instead, I sat there wondering how to solve his malfunctioning taste buds dilemma.

Dr. Melmed’s office arranged for Gilly’s EEG. They called to say it would be at 7:00 A.M. tomorrow. “That is a very difficult time of day for my husband,” I explained. “How about 8:00 A.M.’” she countered. I told her plainly, “We could do it, but my husband is undergoing radiation and chemo right now, and he has trouble getting up in the morning. If we have to, though, we will.” “How about 11:30 A.M. on Monday?” she kindly offered. I thanked her profusely for being so flexible. It really does pay to speak up. I have more and more chutzpah everyday, I find. Anything to ease this grueling experience for a guy who deserves the best case scenario.

annual event

Thankfully, Gilly had a much better appetite today. He worked in his garden for a while, clippers in hand. On the way to radiation we stopped at the local nursery to choose this season’s annuals. He watered them as soon as we got home, but planting may be a slow process. No need to rush. We can all help (if he’ll allow it). One day at a time.

The flowers symbolize hope; promise that our days will be filled with beauty. I attached a picture of our glorious irises at their peak. The staggered perennial blossoms provide us with something new to look forward to as time evolves. Gilly craves the feel of dirt on his hands, but he’ll have to wait until next year. We need to protect his hands.

His eyes are bothering him terribly. I wish there was some guarantee that they will improve when the treatment is done. It is difficult to modify one’s life to adapt to a condition of this nature when it is unclear as to how long it will remain as such. As I’ve mentioned before, one of Gilly’s greatest gifts is his ability to adapt. I wonder if he simply refuses to accept that his eyes may remain this way. I suppose, for now, that’s a good thing. No one has to help him learn to find hope; he’s doing this instinctively; crucial to eventual healing and / or coping with adversity.

I’m typing in the dark, because I’ve moved my office downstairs where it is cooler by day. Gilly is catching a few winks before dinner. I have a cold, or a bout of allergies (hard to tell which), so I may have to find another place to rest my head tonight. I’m pretty pooped, and so my blog entry is significantly shorter this evening.

Feeling hot, hot, hot

Again, my fella awoke at 11:00 A.M. This is beginning to pose an appetite problem I’m afraid (unfortunately not for me, though. Sharon rationalizes it as comfort food. Don't I know it!). It is 9:00 P.M. and I’ve given up on begging him to have some sort of protein. I was told that protein is essential in order to keep his strength up, but this is the food group he rejects most. I despise the role I have to assume when it comes to begging him to eat. It makes me feel as if I’m the bad guy when I enter the room with what Gilly would normally consider delicious food prepared just the way he likes it, presented as attractively as possible.

“I’m just not hungry. I feel full,” he claimed this evening. At 7:00, I started presenting small snacks to tempt him. I figured I could do the balanced meal thing in installments. He dabbled, but not enough was consumed. I tried everything in my bag of tricks to coerce him to eat, but he will not budge tonight. He needs his dinnertime medication because he has to fast for two hours before the Zofran, and then another ½ hour before the Temodal, so I had to throw in the towel. It’s difficult for either one / both of us to stay awake to ensure this happens at 11:00 and then 11:30 P.M. I gave in with voiced trepidation. He seems to eat better earlier in the day. I will try to organize his food consumption differently tomorrow.

I wonder if the dieticien will suggest some new ideas I haven't tried. We're supposed to get a call soon from the CSSS to set up an appointment. I hope it happens in good time.

Overall, considering what he is going through, Gilly seems strong. He insisted on mowing the front lawn, even though I offered, and so did John when he passed by with Stacey on their way back to Irvington. He did agree to have John empty the grass from the mowing of the back lawn. He also permitted him to start the weed wacker (sp?) for him, which John will attest was no easy task. He gave John the green light to trim the edges while he mowed. I suppose he perceived it as a man’s job. I’m not complaining, because I would have melted out there in today’s heat. Gilly actually broke a sweat, which is amazing, because he is always so cold these days. Later on, he put on a T-shirt (which he soon regretted, since the waiting room at the Jewish was air conditioned).

Speaking of air conditioning, I may not last the summer. He’s so cold and I am prone to heat rash; I suffer from the heat. It zaps my energy in a big way. I’m a winter person, and so at the first sign of heat, I am drawn like a magnet to the mountains where I am free to jump into Grand Lac Long. I swim until the chill of the lake water permeates my body. When I have to be in town during the hot weather, we usually have an air conditioner in our bedroom, one in Yaron’s room and fans going from all directions to push the cool air around the house. Can I manage without an air conditioner all summer when we are in hot and humid Montreal? I’ll do my utmost, but it won’t be easy.

The drive to the hospital today was stifling; I didn’t dare turn on the air conditioning in my black Jeep (not the best colour to choose, when the heat rises). Gilly cannot even tolerate the fan. I’d be devastated if he got sick just so I could be comfortable. So I did what I had to do; dropped him off after radiation and spent some time in IGA’s frozen food section! I’ll either get used to the heat (which would be a miracle) or set up a closed room in the house where I can escape to chill out.

10 more sessions of radiation to go.

A family affair

Gilly got up at the crack of dawn (8:00; everything is relative these days) to watch his races, then he tackled the lawn. It was finally a warm and sunny enough day to draw him out of doors. He mowed the backyard, and then took a break and returned to his races. He promises to move onto the front lawn (of course, I would have started there) tomorrow. So he really had a great day, doing two of his favourite activities.

Let the bells ring out, let the birds sing, we made it to Michal’s Bat Mitzvah. The four of us were there together (see photos above taken at home) and Gilly’s effort to be there and remain for as long as he did was well appreciated. Many people came over to greet him and express how glad they were to see him. I think it truly warmed Gilly’s heart. I know it did mine.

Gilly is usually the life of the party; he’s an amazing dancer. In days gone by, his dance card would fill up as soon as he entered the room. Tonight, he remained seated. Yaron asked me to dance, and later dragged his sister onto the dance floor. It was bittersweet. I felt rather melancholy, remembering how Gilly used to love to dance. But Gilly smiled broadly and encouraged us to get out there and boogie. Dancing has never been my thing. I much prefer to sing, so I didn’t mind remaining at his side most of the night humming along to familiar tunes. We left at 10:00; we were there for just over four hours. I never imagined we’d be there for that length of time. We really did party hearty. Thanks Michal. It was a pleasure celebrating this milestone with you, youir family and your friends. Mazel Tov on becoming a Bat Mitvah.

Ain't nothing but a hound blog

Title courtesy of Joey; the true pun master of the family.

This blog is dedicated to Auntie Kayla. Sorry I get around to writing my daily entries so late at night. I really don’t mean to keep you up. I hope you get to bed earlier this evening, since this posting will be out by around 8:00 P.M. Kiss Uncle Donnie goodnight for me.

Gilly’s day started at 11:00 A.M., which is becoming a habit. He looked rested, with excellent colour (that swarthy dark skin wears well; one would expect him to look pale, but he doesn’t).

While eating his breakfast, John, Stacey and Justin arrived with bagels aplenty and all the fixings. Kyle has the sniffles, so he stayed back with Grandma Ruth (my Auntie Ruthie). We aren’t sure if it’s allergies or a cold, but John and Stacey felt (and rightly so) that it’s better to ere on the cautious side to protect Gilly from unwanted germs.

We introduced Whistler to Liylah, and they became pals in just 2 sniffs of dog’s tail. They romped about in the yard with John as mediator and Gilly as spectator.

Fred arrived with a bag full of bagels and even more fixings to add to the bounty. I got the hint: it was time to spread out the feast.

Yaron heard the clatter of dogs, plates and cousins, and at what would normally be considered an ungodly hour, he emerged from his den to join his kinfolk. Grandma Shirley entered the scene soon after.

Justin and Yaron have a thing going. Since he could speak, Justin always called Yaron his precious Ron. He understood ‘Ya’ as ‘your’ and so one day he said, “He is my Ron. My precious Ron.” He got quite a rise from this misinterpretation of Yaron’s name. We often tease him; “No, he’s my Ron,” but Justin claims him as his own, and won’t have it any other way. They have an unusual relationship that picks up where it left off every time they have a chance to be together (usually in Birch Point). The picture of the two of them above depicts their special bond. They love to play physically. Usually Kyle is right in there too.

I didn’t think Gilly would be hungry, having just had breakfast, but the company and colourful, mouthwatering fare stimulated his appetite. I’m not sure whether to call it breakfast # 2 or lunch number 1.

What a beautiful way to kick start the weekend. Conversation circulated around the table, as the dogs playfully teased one another. We had to vacuum the hair at least twice during the meal, but it was great fun regardless.

Gilly eventually had his fill, and went downstairs for a rest. Fred left, and Joey soon took his spot, tired of waiting for Susie to buy out Winners; anxious to spend time with John et al. Out came more plates, and the food fest continued.

By 3:00, John and Co. had to part, so we bid them adieu knowing we’d see them next week at Evan’s graduation party. It’s always a pleasure to celebrate momentous occasions as a family. Grandma made her way out around the same time.

Joey and set ourselves down on the couch for a while, until I excused myself to give Gilly his lunchtime pill (we’re really moving things up, I tell you). Joey followed along behind to say hi to Gilly. They sat and visited while I made lunch #2 (he was actually hungry yet again). We conversed as a threesome while Gilly munched down his food. Susie showed up just in time to eat her share before the rest of the food was put away. Of course Joey and I could not be rude and have her eat alone, so we nibbled some more. The eat-a-thon went on from about noon to 5:00 inclusive.

Our sweet Tamara came by once everyone else had disappeared to drop off some jelly bellies for her dad, and Felix and Norton cookies for me. Why am I gaining the weight Gilly must surely be losing, I wonder?

While driving Tamara to meet her friends, I received a call from Gilly to inform me that Liylah had eaten our frozen dinner (a hearty soup with all 4 food groups)! Oh well, I suppose she thinks we’ve gorged enough today. I need higher counters in my kitchen.

I guess we’ve finally worked up our dinner appetite (how, I really can’t tell you). Gotta run, so we are not up all night waiting for the final dose of the evening: Temodal.

Sleeping beauty

This picture does not accurately capture how handsome my longest standing boyfriend (as Susie puts it) really is, but I thought you might want to catch a glimpse of the main Blog character, his best hundt, our lush, overgrown grass and our over ripe lilacs. We enjoyed blue skies on this warm sunny day (which was 2 days ago, actually. The Blog would not accept this picture until this evening, for some unknown reason. No room in cyberspace?). Gilly dressed for cold weather, as he often does these days.

Today I noticed the opening of our first iris. I'll try to capture it on film tomorrow.

11:00 A.M. Not a creature was stirring, except me, tapping away on the keys, writing reports, and reports.... I glanced at te clock in surprise as the phone rang. I couldn’t believe the time. Sema and George were shocked to hear that Gilly had not yet awakened. “He’s still breathing,” I promised. “I did the mirror check.” I was only kidding, of course, but as soon as I hung up I went to investigate. There he was, smiling as he stretched.

He obviously needs his sleep, and thank goodness it comes easily. The only problem lies in my instructions for the timing between meds. How can I spread out the pills throughout the day when he wakes up so late? The extra hour of sleep threw me off kilter, but I caught my step and bumped everything up a tad. The question remains; can I stay up late enough for the final dose?

After a late breakfast, I continued to plug away at my work while Gilly relaxed in his chair. This afternoon, I had to go to work to exchange materials, and so I assigned vacuuming Liylah’s hair to Yaron (who’s off of work now until camp) before heading for the shower. Much to my dismay, he pointed out that the vacuum cleaner wasn’t functioning. We tried all sorts of outlets, but to no avail. I thought, “Great. The family is coming to dinner and we will be knee deep in hair by then.” I remembered that we had another small vacuum downstairs, so I sent Yaron downstairs with the broken one, and had him bring up the other. By the time I got out of the shower, Gilly had repaired the loose wire, and we were back in business. I felt a rush of relief. He still has it in him! I purposefully had not dared ask him to fix it, but he took matters into his own hands and presto, he worked his magic. This may not seem like much, but to us, it was a joyous event. Now and again, his temporarily hidden talents surface, and when they do, it sends a wave of pleasure through our souls. Yaron and I shared a smile as Gilly explained what the problem was.

Due to the vacuum caper, I was running late (it’s not that I’m last minute Charlie, but I do have a lot on my plate these days). I zipped to Vanier, ran around in my thongs to gather my tools for a weekend of work (bad fashion choice; hard to dash about in flip flops), lugged about 5 enormously heavy binders to my car (pumped up on adrenalin, which is how I managed to do it all in one trip), and hightailed it home to cart Gilly off to radiation. We arrived at the appointed time without a second to spare, only to wait ½ hour while they located Gilly’s misplaced chart. Oh, if only I had known…I could have made 2 trips to my car instead. Remind me 2 days from now why my shoulders, arms and back muscles are hurting!

We enjoyed a delicious Shabbat dinner minus the Melling Blauers (we have to share them sometimes, unfortunately). Gilly showed me how to prepare his seven minutes potatoes (which I have modified to what I like to call ‘roots medley’) and greeted the guests as they arrived. He went down for a rest until the food hit the table, and then rejoined us for supper. He remained upstairs for a good length of time before retiring for the evening. Shabbat dinners at home provide a comfortable balance between rest in a cozy spot and warm, pleasant human contact with loved ones.

Our weekend is chock full of events to look forward to; visiting and celebrating with special friends and family from near and far.

Ting

Every day that passes brings us one step closer to the end of the tunnel. Gilly is extremely tired these days. He sleeps in until about 10:00 these days. His need for sleep has increased. I repeatedly mention to him the fact this is unquestionably to be expected, but my attempt at assurance provides little solace.

My mother explained that when she was losing her hair from her chemo treatment many years back, people would assure her it would grow back. She burned up inside whenever someone made this claim. It did not change things; what she was experiencing was so very traumatizing. She felt she had every right to address her feelings in the moment.

I believe Gilly’s scenario is a similar circumstance. I’ll have to make an effort to refrain from telling him what he already knows. What he needs is a good listener; not try to solve his problems or try to make the hurt disappear. The hurt is real, and has to be expressed in a healthy manner. Gilly is exceptionally brave, and so when he expresses a discomfort, I have to simply listen empathetically. We can all learn from some of his wonderfully effective coping mechanisms.

Ting is the Chinese verb: To listen. The Chinese character to depict this word includes a symbol for eyes, ears, heart and undivided attention. Interestingly it does not include a mouth.

We spent a quiet morning at home together, I writing reports, and he resting. He was not cold at all today. He had a decent appetite, and managed to smile frequently (every ½ hour or so I check on him, offer food and drink, and do or say something silly to elicit that warm smile I’ve grown accustomed to over the years. He never disappoints me!).


John called to make plans for Saturday (he’ll be coming in with his family from New York), so Gilly has special guests to look forward to. We’ll keep the activity level low for the rest of the weekend (except Shabbat dinner, as always), to preserve ample energy to enjoy Michal’s Bat Mitzvah on Sunday evening.

We saw Marvin for a teeth cleaning in the early afternoon, then headed straight for radiation. He snoozed while waiting for his turn (45 minutes late) and I started my reading for next fall’s course (it’s a portable piece of work to attend to). It'll be an early night tonight, as we are both feeling almost as lazy as Liylah, the gourmet hound.

Protectia

Cathy Rigas, the CSSS nurse arrived at 11:00, and remained until 2:00!! First, we met as a threesome, but when Gilly tired, he moved to his beloved lazy boy and I took advantage of Cathy’s fountain of practical medical information.

She provided all sorts of detail; what symptoms exactly should send us to emergency (fever of over 38.5º, staring into space non-responsively, drastic change to balance and a headache that won’t dissipate with Tylenol or Advil). She provided information on what a worrisome headache looks like and some causes (for example low sugar or fatigue), how to organize the dispensing of medication in the best possible way (time wise), what creams are safe to use and why, and much more.

She revealed some clever tricks: offer only a half glass of water at a time to keep the supply of water fresh (he leaves it by his side and sips only when I remind him), put a clip for his cell phone on his belt so if he falls he can call for help if needed, wear 2 pairs of gloves for gardening so his hands will not get cut, wet or dirty, thus offering less chance for infection, gradually put less tea and more fresh mint in the pot (even though it’s decaffeinated, it still acts as a diuretic), and so on.

She made some suggestions for follow-up with the doctor; check which insect repellants are safe to use while on treatment. We are planning to go up north as much as possible this summer, so I want to be sure he is safe. She also asked that I find out the protocol for prevention of allergic reaction to Iodine (he seemed to have one last time he had the CT scan, so we should be prepared; sometimes Benedryl will be given one or two days prior to the test). She also mentioned that I must inform Vigit that the CSSS is handling the case, so they can network as needed.

She informed us that Gilly’s name will be placed on a list that would enable us to use the 24 hour service known as ‘Parde Medicale.’ A nurse will answer calls automatically to provide medical advice. Only a select number of people in the community are cleared to use this service. The person answering calls will have a file on hand with basic information about Gilly. If we do call, she asks that we also leave a message for her. They usually do fax the information to Cathy anyway, but she does not want any delay in her being alerted to a potential problem we are having. Gilly would call this ‘Protectia.”

She will give Gilly his B12 injections so we do not have to sit in a potentially germ-filled waiting room any longer. She will return to do another visit in 6 weeks time.

Dr. Wan replaced Dr. Sultanen today for our weekly check in at the Jewish. He assured us that any insect repellant is fine, but mosquito bites are not (and he said this applies to everyone). If he is bitten and develops a fever, of course we’ll need to go in immediately. He said Gilly will need to take Benedryl and Prednisone 24 hours before his next CT scan. This is crucial, because the first time was a rash, but the second time could be much more serious. He too emphasized the type of headache to watch for; the kind that don’t go away. Luckily, this has not ever been the case since the shunt was inserted.

Gilly ate like no tomorrow this evening. I made his favourite; schnitzel. He had double helpings, confirming that I had made the right decision for the menu. This dish is considered a special treat for the whole family; I rarely fry food, except for schnitzel and potato latkes. Tamara was duly warned, and invited to partake, but she had made previous plans. She requested we save her some. Gilly agreed to reserve a piece or 2 for his daughter, but the rest is on reserve for tomorrow’s lunch. He was in jovial spirits as the three of us chatted through dinner.

Blossoms emerge

A LONG time ago, I tried to add these photos to the blog, but for some reason, it just wouldn't take. So please accept a late viewing of our plum trees in full blossom. I wondered, at the time (see 'For everything, there is a season'), what would be next to spread its glory. Now I know the answer; the lilacs are at their height of lusciousness. Yellow irises are on the verge of revealing their intricate, velvety petals. The peonies have a ways to go, but the buds have already formed.

Gilly has not spent much time in the garden of late, but appreciates the fruit of his labours of yesteryear. The sun broke through for a significant period of time today. Hopefully my feisty Israeli gardener will again be tempted to spend time in his yard for reasons other than to pick up Liylah's business.

I spent loads of time at the computer this morning, working on my year end report. The hours slipped by without my plying Gilly constantly, in small doses, with food and drink as I usually do. I provided breakfast, but left him to his devices from then on, working feverishly to complete my task. I’ll have to budget my time more effectively, because if I do not make periodic, tempting offers of food and drink, he doesn’t indulge. I can fully understand. I myself have a bad habit of not taking in enough fluid during the day. However, it is crucial that Gilly remain hydrated and well fed.

Today was my last official meeting at the college, so I will be more attentive from now on. All work can be done from home at this stage of the game, with short trips to my office to pick up and drop off documents. Thank goodness for computers, Internet, fax machines, answering machines and so on.

Jerry brought Gilly over to have his tooth filled at 2:30, and then on to radiation (now moved up to 3:45). Nothing untoward occurred, so that’s positive.

I arrived home at 6:00 with a car full of groceries. My worn out fellow offered to help me unload my packages, but we settled on having him start the Bar-B-Q instead. His eyes were at half mast, but he never misses an opportunity to offer his services to lighten my load.

Yaron did the heavy work as Gilly puttered around upstairs, straightening up odds and ends. He complained of a headache, but preferred to eat before taking Advil. By dinner’s end, the pain had disappeared. He may not have eaten his fill in my absence, which certainly could result in a headache.

His gaze seems rather unfocused this evening. I asked. “Is it your eyesight, or are you just plain tired?” He concluded, “It’s probably a bit of both.”

Tomorrow, sometime between 10:00 a.m. and 11:30 Cathy, the CSSS nurse enters stage right (I stand corrected; the revised term for CLSC is Centre Service Santé Sociale). I wonder what role she’ll play in our reality show?

Tooth hurty appointment

I try so hard not to ‘baby’ Gilly by doing tasks he is fully capable of. Since he has been home from the hospital, I’ve taken to placing his pills in small, decorative vessels, to remind him at mealtime to take his ‘cocktail’ of the hour (as my mom always did for my dad). Yesterday, he mentioned that there’s no need for me to go to all that trouble. I realized he must be feeling ‘babied,’ so today I held back and watched to see if he’d remember. He sat at the breakfast table this morning and asked, “Where are my pills?” I filled him on why I had left them in the drawer. I probed him further, “Is there anything else I do that bothers you? I’d like to know, so please be honest.” To tell you the truth, there is something else that bothers me.” I mentally prepared myself to humbly accept any sort of criticism he may dish out. He tends to tell it like it is; one of the many reasons I love him. He softly admitted, “It bothers me that my hair is falling out.” My heart dropped. How unsettling this must be. “Would you like me to check out whether or not the barber shop is opened today?” I offered. [For the benefit of those living in far off lands, today is a Canadian holiday called Victoria Day. In Quebec, it has been renamed Dollard Day]. “Why not?” he agreed. I picked myself up and investigated options. An hour later, Brad Pitt was back in town. This did not solve the problem entirely, but I believe our joint, affirmative action helped to some extent.

We had a series of visitors later in the day. First, Marvin, Sharon and Rosanne came by for a walk (as Gilly relaxed on his chair). When we returned, Gilly arrived upstairs to greet us. I reminded Marvin, “Gilly will see you at 2:30 tomorrow.” (Marvin will fill the tooth where he had his root canal). Rosanne came out with a clever pun, “Tooth hurty, you say?” I love a good play on words.

A little later, Tina rang the bell accompanied by Anna, a delightful surprise. The four of us enjoyed a late afternoon coffee break (3 caffeinated, 1 decaf). After a time, Gilly tired and so he resumed his position on his chair. I soaked up the delicious opportunity to visit awhile longer.

Tamara arrived soon after, only to find Liylah sleeping with a tiny jar of honey. What a sweetie!

We ate dinner as a family, and when we were done, Tamara and Yaron got Liylah all excited by throwing balls back and forth across the living room and down the hallway, wild antics that would have made Gilly crazy in days gone by. This evening he observed with glee, his face revealing genuine pleasure in the lively, joyous atmosphere we call our home.

Gilly is downstairs right now, shivering. I diagnosed the symptom as a result of extreme exhaustion. Gilly insists it’s the haircut. I brought him a blanket, and Yaron offered one of his MANY hats.

Tomorrow, it’s back to radiation. I can’t imagine him being more fatigued than he is right now, but there’s still 3 weeks to go. Luckily, he continues to have an appetite, good spirit, a positive attitude and brave acceptance of his circumstance. The anti-nausea medication is working to capacity; he has not needed to go beyond the bare minimum dosage. I suppose we cannot ask for better. Let’s hope that the next three weeks whiz by uneventfully.

Just for laughs

My plan was good intentioned, but had very little impact. The first comedian (somebody Griffin; lean pickings at the video store) was foul mouthed and not particularly funny in any way either one of us could comprehend. We switched DVD’s after 10 minutes of shared distaste for his style of humour.

Ellen Degenerous (sp?) does an amusing routine, but Gilly was in la la land before she lay the groundwork for her second joke. I watched a movie, accompanied by the steady rhythm of Gilly’s snores. I could think of worse ways to spend a Saturday night. At least we were together in a warm, safe environment.

The rain kept up for the better part of today, keeping Gilly indoors yet again, except for a short jaunt to Play it Again Sports. Yaron was looking for new roller blade wheels, an excuse to spend quality time together. It pleases me to see the spark of interest light up Gilly’s eyes. The prospect of hanging out with his son is very menaingful, but being able to concretely help him makes it that much sweeter. Yaron still has only a permit, so he needs a licensed driver with him in the car (especially one wielding a MasterCard). They returned home empty handed. I asked, “How was it?” “It was good to be out of here, but we did not succeed. They didn’t have the wheels,” he reported. The operation was successful in my eyes. Gilly had a mission; a reason to get out of the house other than for a medical appointment.

We enjoyed a visit with Marvin and Sharon this afternoon. There’s nothing like sipping tea with devoted friends, watching the sun break through the clouds.

Gilly is beginning to shed some hair. It must be disturbing to him, although he hasn't indicated this directly. I suggested he shave his head again so the bald spots will not stand out as much. He looked so cool awhile back when Keren's dad shaved his head. It seems, however, that he is more hesitant to go all out this time. "Let's see how it goes," he decided.

I tried our local library this evening, in hopes of finding some Gilly-friendly stand-up comedy. I uncovered 2 Jackie Mason CD’s. Yaron put the DVD player downstairs. Gilly can sit on his throne and laugh to his heart’s content. I know he prefers this sort of humour.

Saturday night at the movies

Gilly spent a relaxing day at home, sheltered from the miserable weather outside. For those living outside of this region, you may perceive my daily ‘rainy’ reports as bleak, but I’ve actually spotted a few of our neighbours designing on an ark. The grass is becoming greener every day, but alas, it is too wet to cut. Gilly spent what was left of the morning (he awoke teenager style yet again; 10 a.m.) preparing for the end of this constant stream of precipitation by greasing his lawn mower and hedge trimmer.

I read a decent portion of my Saturday Gazette, prepared meals for my men, and made a dent in the final grading of papers for my Nutrition for Children course. Not bad for a lazy Saturday. I can tick that task off and move onto the umpteen others that lay ahead before my work can be considered done for the semester. June 1st is a target date for the large percentage of remaining paperwork, so the end is in sight.

I decided to rent a few DVD’s tonight featuring stand-up comedy. Gilly cannot see the screen well enough to appreciate a movie, so I decided to tempt him with a dose of good, old fashioned laughter. They say a good guffaw has healing powers, so why not bring on the humour? I could not find any of his favourite stand-up comics in the video store (George Carlin and Bill Cosby come to mind), but it’s a start. We’ll see how it goes.

Seeing eye dog

Shabbat preparations continued in the wee hours of morning, allowing Gilly a few more winks before the first appointment of the day; Dr. Melmed.

It was a pleasure to meet such a gentle soul. “So,” he began, “You must have a very long arm to reach all the way to Toronto” (referring to the fact that our friend made a personal request to have Gilly seen). He wondered how we are related to the Blauers. We spoke briefly of my dad with fond memories and shared regrets.

He did a full examination, purposefully challenging his powers of observation by delaying his perusal of the reports that lay on the desk in waiting. He admitted that Gilly displays what he described as mild symptoms. He stated that Gilly is on the right track, although he is aware of the controversy in terms of treatment choices. He gently mentioned that he can do nothing, really, except examine, because he is not involved in the treatment end of this type of condition.

There seemed to be a pause at this point, so I drew the discussion towards what I thought we were here to investigate. I asked what the referral actually says, and he humorously replied, “You think I know?” He read aloud what I had thought I understood from the messy scratching, and asked if Gilly has had an EEG. He explained that this test would possibly (but not surely) indicate if Gilly is having seizures. He also suggested that a blood test is in order. He apologized for sending us to further appointments, and alluded that he understands what we are going through with countless appointments to attend.

Seizures are not common in this part of the brain, he clarified, but they can occur. His goal is to see how prone Gilly is, and to adjust the medication (Dilantin) accordingly, so as not to be a higher dose than is warranted. No need to overmedicate, especially when so many medications are at play simultaneously. I like his thinking. These tests will assist him in determining the appropriate dosage.

Before sending us off for blood tests, he checked the results on the blood work done yesterday to see if this test was actually necessary, so as not to cause Gilly undue discomfort. This fellow is a true gentleman. We send our heart felt thanks to Maurice for stretching his arm all the way to Montreal. We will see Dr. Melmed again in three months.

I dashed off to work while Grandma Shirley provided Gilly with shuttle service back home. Later that afternoon, I picked Gilly up for radiation. I called first to clue him into my whereabouts as I was approaching the house, but he couldn’t hear the phone because of the vacuum. God bless that hairy dog. There seems to be no end. I was glad he was feeling strong enough to get the job done.

On the way to radiation, Gilly shared Liylah’s latest trick; she took my reading glasses to bed with her this time. She’s more cerebral than we first thought. Last week Tamara discovered her asleep with my book. If she manages to get the two items together, she’ll have it made.

Shabbat dinner brought us together and kept us warm on a cold, wet evening. We missed Joey, who stayed back with a cold. Gilly appreciates the concern for his welfare. We were thrilled to see Evan and Keren. Even though we cannot all be there every Friday, our spirits mingle and it is always a special evening. Shabbat Shalom.

My life is an open blog

Gilly looked like a throwback from the sixties today; stoned to the gazoo! His eyes were red and glassy. He kept insisting, “I’m high. These drugs are messing with my head.” Actually, the word ‘messing’ is masking the actual word he used, which I will not repeat here. To be honest, he used a much more colourful term.

This symptom is to be expected when pumped up with so many powerful meds. Feeling stoned is not the worst side effect he could be experiencing. A lopsided grin was plastered across his face all day. Coincidentally, he had a bad case of the munchies. Good timing; I cooked up a storm. It gave me tremendous pleasure to see him pack it away with such gusto.

We received a call from Dr. Melmed’s office this morning to inform us that we have an appointment scheduled for tomorrow at 10:00. The secretary came off as a true honey, in stark contrast to Dr. Kavan’s impatient receptionist. Halina snapped at me when I tried to clarify her demand to have me call the Neuro to have Gilly’s file faxed to her office at the Jewish. I wanted to explain that Dr. Kavan instructed me to call, but she cut me short and admonished Dr. Kavan for not following protocol; “He knows the rules,” she snidely remarked.

Brad called from the CLSC to report that he presented our case to the team yesterday as promised, and they unanimously agreed that Gilly requires the services of a nurse, dietician and physiotherapist. The physiotherapist will do an assessment, and based on his findings, it will be determined as to whether or not the additional services of an occupational therapist will be necessary. In the meantime, the physiotherapist will suggest ways to prevent falling, and provide exercises for Gilly to do at home. Thankfully, the system is beginning to churn out some tangible assistance. Brad claims that we will be bombarded over the next couple of weeks. I’m relieved to hear that affirmative action is within our reach. I started making ourselves known back in mid-March. It’s now mid-May and they’re just beginning to cook with steam.

Gilly had his blood test at 4:15 this afternoon, just before radiation. Vigit took some time to chat with him about his physical reactions to the medication, and made a few suggestions for modifying his diet. She asked detailed questions, indicating her extensive knowledge of potential reactions to Temodal. She is attentive, kind and compassionate, and seems to take a genuine interest in Gilly’s welfare.

It’s the human touch that makes all the difference. Highly competent medical professionals (like Dr. Mohr; the top of his class) can work wonders for the body, but those who show empathy as they put their skills and knowledge to practice are a cut above the rest, and we are ever so grateful when we chance to encounter such exceptional individuals. It should be a prerequisite to obtaining one’s medical or nursing degree, but I guess we wouldn’t have enough doctors and nurses if this were to be true.

Tomorrow marks the halfway point for the radiation treatment. Shabbat preparations are already in progress; life goes on as 'usual' as possible. Family and friends enrich our lives.

Whose job is it anyway?

Today’s double header was topped off with 3 Wilensky specials. Dr. Kavan called us in right on schedule and declared, “Good news.” My heart skipped a beat, until he completed the announcement, “You’re going to be examined by some students.” Lunch bag letdown! Don’t know what I thought he might say, but that statement was clearly not what I was hoping for. The 2 students fumbled through the procedure in good humour, while Gilly amusedly cooperated.

When the ‘boss’ (as the students refer to him) finally appeared, he had little to say except that the treatment is going well and so everything will proceed as planned. I stepped in with our news (root canal and such) and mentioned that I had contacted 2 nurses at the neuro for instructional information, and have yet to receive a response. I alluded to the fact that the whole affair seems disjointed; Gilly is believed to be at the General by the nurses at the Neuro. We had to remind Dr. Kavan at this point that Gilly is being radiated at the Jewish. Without hesitation, he suggested he begin to see him at the Jewish instead, although he reiterated his opinion about availability of technology being superior at the neuro. I certainly don’t want to jeopardize the quality of Gilly’s long term treatment, so I voiced my willingness to compromise; if he will have better access to equipment at the Neuro, perhaps I can simply be more persistent. He discarded my offer and instructed me to call his secretary at the Jewish to make the next appointment.

Next, I questioned why he has not had a blood test as yet (except the one to determine if he could have root canal). I reminded Dr. Kavan that we were told from the start that blood would be drawn on a weekly basis. “They’re not doing that?” he asked. He explained that he was under the impression this was happening, and so we should have Gilly’s blood taken here and now. I reminded him that we are switching to the Jewish, and since we are to see Dr. Sultanen today, perhaps it should be done there. He agreed.

I mentioned that Marvin wants to follow up on the root canal with a filling, and a cleaning for preventative purposes. I wondered if now would be a good time, or if we should wait. He explained that it should be immediately or wait for another six weeks, due to the expected gradual, continual dip in immunity. It’s back to the dental chair A.S.A.P., it seems.

We forked off in different directions at this point; I went back to work, while Gilly and Jerry went off to Wilensky’s.

Our second reunion of the day took place at the Jewish at 4:00. We decided to meet early and go in together, so I would not miss Dr. Sultanen’s unscheduled appearance (in terms of exact time). After the radiation session, the Dr. was paged on the loud speaker, and we were called into his office moments later. Gilly asked about the MRI results. He said he still does not have the answer, but plans to call the radiologist tomorrow and will call us with the information. He asked if that would be O.K. with us.

I moved onto the subject of weekly blood tests. He claims this is normally done through oncology, which is why he had not ordered the tests. As he started to write out the order I informed him that Gilly will be seeing Dr. Kavan at the Jewish in future, so perhaps they should do the blood tests here through oncology. He insisted that the blood be drawn tomorrow through radio-oncology, and promised that he would take it from there in terms of organizing the procedure for the future. He expanded, “Dr. Kavan will have the results available to him sooner.” More stars on Dr. Sultanen’s page, folks!

Gilly’s mouth is still tender, but the pain is bearable. I mentioned to Dr. Sultanen that he is on Advil for pain, and he explained that this is better than Tylenol, since it will not mask a fever. Bingo!! New information surfaces daily. I had assumed Advil was best for swelling coupled with pain as it has anti-inflammatory powers, but had never considered this other aspect. I simply called the pharmacist to ask if he could take it with the other meds. I vow from here on in to become much more inquisitive.

I sincerely hope that I have not made a mistake by nudging Dr. Kavan to switch Gilly’s treatment over to the Jewish + Jewish. We’ll have to take each new day as it comes, and make sure that when he requires an MRI, he has access to the machine in good time. We still have trump cards if need be, so for now, my instinct tells me that Gilly is safer with all his doctors in one institution.

It was a constructive day, and yes, Lisa, I did dress for the weather. I was able to be present for all fieldwork matters brought up at today's department meeting (7 items on the agenda!). This makes life simpler for me down the line, since I am the coordinator of this arm of our program and am expected to follow through on decisions made at the department level. Thanks to Sheryl and Jerry, i did not miss a beat in this regard.

I am being cautious not to over extend myself along too many tangents these days. This takes a tremendous self-control, but it is vital that Gilly not be left alone unnecessarily while in his current compromised state. It is my pleasure to meet his every need and want.

Got to the root of the problem

I was working on a document for fieldwork coordination this morning when the phone rang. It was Dr. Shapiro’s secretary, wondering if we could possibly be at the root canal appointment ½ hour early. “Sure!” I enthusiastically responded. “No problem whatsoever.” I was elated. “We’ll be ½ hour closer to Gilly’s eventual relief,” I mused.

I gathered up some papers and hurried Gilly out the door. Grading assignments in waiting rooms is my latest habit; used to be coffee shops. Three blocks down the road I realized that my course outline was sitting in my briefcase at home. “I need my marking scheme,” I shouted (‘rubric’ is actually the new fancy term for ‘marking scheme’; the criteria I use to grade assignments). “How useless to bring all these papers without my necessary tool!” “Go back,” Gilly calmly suggested. I took his advice, and before we knew what hit us, we were back on track. Halfway to our final destination I took a gander at what I was wearing. It was a bleak, damp, cold and rainy day. Passers by were wearing long pants, warm jackets, and many carried umbrellas. I was sporting shorts, flip flop sandals and a t-shirt. Underdressed is an understatement. But I matched! All in red.

This reminds me of working days. I often find that I pack my schedule so tightly I forget to leave room for bathroom breaks and lunch. Today, I was so keen on ½ hour less pain for Gilly, I forgot to manage my own needs. I think I better create a checklist for myself. Good thing I wasn’t still in my nightgown!

Dr. Shapiro took care of Gilly’s root canal without incident. “I didn’t feel a thing,” he claimed as he sauntered out of the building. His mouth was still frozen, but the lopsided grin was prominent. He ate freshly made apple strawberry sauce and sipped on juice, quite content knowing that the deed was done.

I received calls back from the 2 neurologists’ offices (first Rubin, then Wein) this afternoon. At first, Rubin’s secretary booked me for late July. I was unruffled, for some reason, at the notion of such a long delay. When she asked the name of the Dr., I told her Sultanen, and the reason for the consultation. She immediately suggested that June 1st would be a better idea, and I agreed and thanked her. Wein’s office was only able to commit to July 19th, so I opted out. In the end, Dr. Melmed agreed to see us as a special favour to our dear Torontonian friend, and asked that we send in the referral. We are thrilled with the turn of events. He is head of neurology at the Jewish. He treated my dad and Susie, and is touted as a real mench.

Gilly plodded down the hallway towards radiology, and I dashed up to neurology to drop off the same referral I picked up from that very office yesterday. The secretary did a double take when she saw me, and cheerfully complied with my request to place the information where Dr. Melmed would see it. We await the call for the actual date for the appointment, but I am confident the blank will be filled in imminently.

On the way out of his radiation session, the pain was visible on Gilly’s face. Freezing lasts only so long. I attempted to locate a nurse to investigate if it would be O.K. for Gilly to take Advil, given the heavy duty meds he’s on, but he impatiently insisted I leave well enough alone. On the way home I appealed to his senses, pointing out that if he has intense pain during the night, it may be difficult to access an answer to this question. I understand that Gilly’s threshold for pain is high, but now is not the time to risk lack of sleep due to pain, and I’m concerned about proper nutrition as well (Jewish mother that I am). My second plea worked, and he agreed to at least allow me to gather the necessary information. The pharmacist assured me that Advil is safe, and at this stage of the game, Gilly needed no further convincing. An hour later he heartily consumed a full course meal. Phew!!!

Tomorrow, the medical-merry-go-round continues. I will attend my (what technically should be a day long) meeting at Vanier from 9 to 10 A.M. Sheryl and Gilly will meet me at the corner of Victoria and The Boulevard at 10:15 (sounds like a criminal act). Off we’ll zoom (the get away) to see Dr. Kavan at 10:45. Jerry will join us there, and when the rendez-vous draws to a close, I’ll return to Vanier for the remainder of the meeting while they head west (changing guards at Buckingham Palace). At 4:00, Jerry and Gilly will meet me at the Jewish, in hopes that we all catch Dr. Sultanen at the same time (not like last week’s escapades). He is supposed to see Gilly every Wednesday before or after radiation (which is at 4:30). We don’t want to risk missing him, so we all plan to be there early.

Will there be bathroom breaks? Lunch on the go? Who knows, but it’ll all get done, that I can assure you.

We’re trucking along rather nicely, wouldn’t you say? 2 ½ weeks into radiation, and chemo, and my guy continues to smile and bravely insists we made the right choice.

Wonders of wonders

One day off and I’m getting lazy! My sweet girl did more than compose a blog entry last evening; she made my day memorable in countless ways, as she so aptly knows how to do. Best of all, she spent quiet time, ‘chilling’ with her daddy (my children rarely allow me to use their ‘lingo.’ Luckily, only Gilly gets to act as censor for his blog, so I’m home free). I stole some time to attend to my own business (laundry, work…what can I say? I’m behind on everything. I drop whatever needs doing to give Gilly my full attention so he doesn’t feel lonely or isolated. When he has someone else to keep him company, I zip about at breakneck speed, trying to catch up on life’s mundane tasks). My son topped the day off with flowers just shy of midnight. He set out to take me by surprise, and he was far from disappointed. For some reason, this Mother’s Day held special meaning. I needed a bit of coddling. My children intuitively sensed my want, and lovingly rose to the occasion, each in her / his unique manner. We were together as a family, and nothing on this earth beats that.

I would rate Gilly’s day today as good, all things considered. He awoke with his signature grin; always a positive sign. I called home at around 2:00, just as I was leaving work. He proudly announced, “I just finished eating.” What did you have,” I asked curiously. “Key lime pie,” he replied. I rhetorically asked, “Oh, you just had lunch.” “No; just pie.” I rectified that situation as soon as I walked in the door. No lunch, no pills, but he enjoyed his pie! Has my role changed or what?

We were not called for a ‘squeeze in’ root canal, so it’s off to Dr. Shapiro tomorrow as was originally scheduled (11:30 a.m.). The pain seems tolerable at the moment, so no harm done (if that blood work is still accurate 5 days after being taken).

I received a call from neurology at the Jewish this morning. Vigit mentioned that Dr. Sultanen requested a consultation the day he put Gilly back on the anti-seizure medication, and the call was a follow-up to what he obviously asked for. He certainly seems to be doing his homework, and so he continues to earn points in my books. The scratchy writing on the referral form seems to say something about anti-convulsive therapy…I may be reading into the rest, but I see words like ‘stopped,’ ‘seizure’ and a’?’ In any case, the secretary said the neurologist has no time to see Gilly, so I am to call Dr. Ted Weir or Wein (not sure) or Dr. Jeffrey Rubin. They are apparently not located at the Jewish, but collaborate as part of the team. I’m skeptical about the use of the word ‘team’ for Mohr reasons than one. It may be worth scouring the city for the best neurologist to handle Gilly’s case. I’ll cross that bridge tomorrow.

I have become master of my own schedule to some extent, now that teaching is done for the semester. There are 2 days of meetings this week, but I will attend all appointments with Gilly so as to remain abreast of key information. It’s the only way I can remain sane as the manager of this whole affair. I am very fortunate to have a wonderful group of colleagues who are willing to take the reigns at the drop of a hat. A few more weeks and I’ll be unencumbered. It’s hard to believe that through all this drama, I only missed one teaching day. Wonders of wonders, miracles of miracles…

Happy mother's day

As a special Mother’s Day present, this blog is being delivered courtesy of Tamara… My dad has had quite the busy weekend, jam-packed full of visits from wonderful friends, and family (Sorry I missed you Barb!) and today was no exception. Last night we conspired together over the phone, organizing a special Mother’s Day surprise for Cindy. The plan was for Gilly to keep Cindy happy in bed, until I arrived early this morning to secretly prepare a surprise brunch. Despite Gilly’s best efforts, Cindy could not remain idle for long, and by the time I arrived on their doorstep (shortly after 9:30) she was already awake and happily munching on a bagel! My father was downstairs watching his races, and my brother was sound asleep in his bed. It was the first time since my dad got sick that the house felt totally normal, peaceful even. If my arms weren’t laden with watermelon and assorted brunch treats, I may have even paused for a moment to appreciate the calm inside; instead I quietly crept in and busied myself in the kitchen. Soon a delicious brunch had taken shape on the dining room table, and we all sat down to enjoy it. Grandma Shirley raced over on short notice, and the lengthy feast began.

During brunch Gilly was reserved, he complained of a headache, and a lingering tooth ache. It looked like chewing was painful for him, but like the trooper he is, he refused to admit this when questioned. His eating was slow and methodical, but he still managed to make a hefty dent in the fruit platter in true Gilly-fashion. During the last leg of the brunch we were joined by Auntie Ruth, and later the Melling Blauers-sans Aaron. Fred arrived to bring Grandma to the museum, and Max trailed in shortly after they had left. This was lucky, as I had prepared far too much food for our small immediate family of four, and the crowds helped to eliminate left-overs.

The brunch became a lunch, and then an afternoon snack as Anita and Bernie dropped by for a late afternoon visit with fresh danishes. Gilly enjoyed the company as always, but still seemed worn out to me. My mother assures me this is due to the rather hectic weekend full of visitors and late nights.

Dinner was another quiet meal for Gilly, with his tooth still causing him obvious pain. Liylah reaped the benefits of this in the form of a more meaty than usual steak bone…but Gilly didn’t seem to mind.

Although I had a great time with my dad today, and he always seems to love visitors, I think today was simply the cherry on top of a weekend full of good times that may have worn him out more than he’d like to admit. Regardless, I am sure that my father enjoyed celebrating a day meant to honour the hard work, love, and dedication my mother shows us everyday…Because no one appreciates her as much as he does now-except maybe me! Happy Mother’s Day to all of you moms out there!!!!!! Xoxoxoxox Love, Tamara

Welcome guests

Gilly's toothache is much improved today, thanks to the miracle of antibiotics. By evening, the pain seemed to have dissipated.

He spent a wonderful afternoon with Barb, fighting his fatigue valiantly so as to avail himself of every possible moment with his very special cousin. She shared her smile, enthusiastic ideas and suggestions and some warm bagels, and we accepted it all with open arms. I haven't seen Gilly this talkative in weeks (or is it months? I'm losing track!).

Later on, we welcomed Sharon and Rosanne. The four of us laughed our way through dinner. We ate at home instead of spending Saturday night on the town, as is our habit. We all agreed that there's nothing like home cooked food. Gilly appreciated the freedom to assume his position on his lazy boy immediately following the meal. I can rest easy knowing exactly what he consumed. It was a win-win situation.

Yet again, friends and family graced our home and helped make our world a better place. Not too shabby for a rainy Saturday.

No small potatoes

Gilly had a rough one today, with constant tooth pain. Marvin determined that he has an abcess and needs root canal. We played the waiting game for a while; the blood results came in around 11:00 a.m. from the Jewish, indicating that he could go ahead and have dental work done, although still not recommended unless there’s an abcess. Marvin prescribed an antibiotic and we secured a root canal appointment for Tuesday. We are still hoping for something earlier. Heidi says she may be able to work some magic for us. With any luck, this will come to be. Vigit believes it’s better to wait a few days anyway, so that the antibiotic has a chance to kick in, so having it done today would have been chancy. I hate to see him hurt, though.

I wish we had been informed directly that dental work should have been attended to before treatment. Looking back, I cannot remember anyone telling us this, but apparently it would have been wise.

I received a message from the nurse at the Neuro, replacing Maria at about noon today. My cell phone buzzed urgently from within my pocket while teaching, but I did not get to answer it in time. I had left detailed information and my central question on her answering machine yesterday, and she replied that she thinks it would be fine to have dental work, as long as we keep the team at the Neuro and the Montreal General are informed. Montreal General? Whose chart is she reading??? Or is she jumping to conclusions, because this is usually the deal; Montreal General + Neuro or Jewish General? She mentioned that she would call the Montreal General to check into this and let us know on Monday.

I stared at my cell phone for awhile, and an unsettling feeling crept over me. Thank goodness I pinned Vigit down yesterday and that blood sample was taken. At least we’ve made some headway towards potential relief. We are developing a close relationship with Vigit, yet we are practically unknown to the nurses at the Neuro. What will happen when radiation ends? It seems that each ‘department’ has distinct territory, but they forgot to mark it clearly, and I can’t read the signs; they’re in code.

So it’s soft foods at room temperature for the next few days. I have to continue ensuring that he eats a balanced diet, but his appetite is slipping. Who could blame him? He now has 4 more pills a day to consume. I made a delicious, highly nutritious soup yesterday containing all 4 food groups (coincidentally, because it was before I knew about the toothache). The leftovers will come in handy.

Liylah did not disappoint us today; she had small red potatoes in her bed when we arrived home. Not bitten, not damaged, just there. A strange mongrel, I’d say. It brings a little humor to an otherwise difficult day.

Shabbat dinner was at home, and I suspect that’s where it will stay for the next few weeks. Gilly can nestle into his chair at his leisure, while I continue to enjoy the presence and moral support of my family. Tamara had a sniffle, so she took the evening off as a precautionary measure. She was sorely missed.

Gilly is eagerly anticipating a visit from his cousin Barb tomorrow morning.

Grin and bear it

Gilly awoke this morning feeling dizzy, and this sensation remained with him all day long.

Brad, the social worker from the CLSC made a return visit, at Gilly’s request, the goal being to determine what could be done to help me. The three of us had a long chat, and in the end, he asked permission to present our case to the CLSC team next Wednesday. He agreed to request the services of an occupational and a physiotherapist as per my plea, and plans to meet with the four of us as a family in early June. He gave Gilly carte blanche to contact him as needed. As for me, he feels confident that I am handling matters well. He let me know that I can access the services of the CLSC as needed. He believes that the blog is serving as my therapist. I have a whole host of amazing, caring listeners. Writing each night allows me the chance to express my fears, hopes, frustrations and opinions on a daily basis in a healthy manner. Thanks, devoted readers, for being there with caring hearts and open ears (or eyes, in this case). Your feedback has helped me to continue arranging my thoughts and placing them in a safe spot.

It was a poignant meeting in many ways. We aired some concerns and discussed certain issues for the first time. For instance, Gilly admitted he is scared to some extent, but he purposefully stamps out negative feelings and thoughts in order to move on; he just doesn’t go there. I was taken aback by his raw description of the amazing coping mechanism he is clearly aware of and consciously manipulating. This is truly representative of Gilly’s nature; the brave, positive resilient man I married. “Grin and bear it.”

Brad sat silently for a moment, almost wistful, and said that we have touched him with our mutual love and devotion, and he is fascinated by our strength as a couple, so much so that he is almost tempted to remove himself from the case. He quickly assured us that he will continue to manage the case, and that it was indeed a pleasure to meet with us today. He only hopes to find himself in a married relationship of this kind one day.

Sheryl came by with a beautiful plant to brighten our day, which was helpful, since it jogged my memory that it is actually her birthday today! Happy B-day, life long buddy! Gifts for us on her special day. I ask you!!! She’s used to me forgetting, and always forgives me. Every year, I get her day mixed up with Joy’s, whose birthday is on the 18th.

Over lunch, Gilly revealed a secret he has kept for two long, painful days. He has a toothache. My first instinct was to get on the horn and call Marvin (our friend and luckily Gilly’s dentist), but I hesitated out loud, which got Gilly’s back up (he thinks I’m overcautious. To some extent, he has a point, but not entirely). I wondered if it is safe to have dental work while on treatment. Bleeding…chance of infection…what are the odds? I thought it would be best to check with Dr. Kavan’s nurse, since I am pretty certain it is the chemo that plays havoc with blood counts. I put in a call to Maria at the Neuro, whose message said she’d be out of town until Monday. I called the clinic and left a message. In the meantime, Gilly called Marvin, who agreed that we’d need the go ahead from the doctor first. The clinic returned my call while Gilly was on the phone with Marvin (like a situation comedy) and left me a message with another nurse’s number to call (I know, mom, I should have call waiting, but it’s not our style). It’s now 9:44 P.M. and that nurse has yet to return my call.

I called Vigit You from the Jewish and left her a message that we would be there soon for radiation, and so could she possibly find out about the Temodal and dental treatment. When we arrived,Vigit happened upon us, totally unaware of our dilemma. I told her the story, and she said she didn't think it would be a problem, but she’d go check. She returned soon after to say that the doctor on the premises insists that Gilly’s blood be drawn before a decision is made as to whether or not it is safe. I could be a nurse, ya know!!! I knew it was potentially dangerous before Vigit did! I think I’ll stick to teaching though.

I soak up all sorts of information from waiting room pamphlets while passing time in the radiation clinic. This afternoon, I found it interesting to read that dental problems frequently occur during the course of radiation in the head and neck region.

Gilly’s mouth is very sore this evening, I hope he receives the all clear to have this problem taken care of sooner than later. It will affect what and how much he eats.

All these symptoms and side issues are part of the ‘quality of life’ package we were warned about beforehand. Gilly’s tough, and complains very little, but I’d give my eye teeth to remove his pain and discomfort.

Liylah enjoyed the scrumptiously flavoured flap meat I had left on the counter (frozen solid) for dinner. New lesson learned; nothing, but nothing remotely food-like should be left on the counter in our absence. I’m a slow learner!

Renewed hope

I'm over exhausted and way over extended, so the bare facts is all you're going to receive tonight:

When I finally cornered Dr. Sultanen (after Gilly already saw him and left the premises; long story...), he acquiesced and offered me a small chunk of whatever precious time he had left in his day (this was 4:40 p.m.).

He took me into a nearby office and drew a diagram of the lesion as he spoke. He explained that the MRI report mentions a new nodule in the tectal region. He drew the nodule for me.

He then described how he took February's and April's MRI slides (images, whatever...) and compared them. He cannot see a difference; upon comparison, they look the same to him. He promised to contact the MRI department and pursue further. Unfortunately, he will be out of town tomorrow and Friday, and so we will not have the final verdict until next week.

He also informed me that he compared the CT scan with the MRI results to confirm that Gilly is being radiated in the correct location, even if the nodule is there. The treatment regime will not need to be altered, even if there is a new nodule present.

I asked, "Could it be that it was always there and just didn't show up before?" He said he does not know at this point.

I was very grateful for his time, especially since he was busy and had already gone through this with Gilly before I managed to find out about the meeting (I called him in the morning, but there was no answer and no machine. I then left a message for his nurse to initiate the meeting, but she only called me back at 3:45 while I was teaching, so I got the message at 4:15). He treated me with dignity, answered all my questions and demonstrated empathy towards us, evidently realizing the emotional turmoil we are experiencing. I left him by thanking him for his time, saying, "Bless you. Now I have a better chance of sleeping tonight."

It's not superfantastic news, but it sure beats yesterday's escapades.

Gilly is still smiling in a big way, but admits that the medication is taking its toll. He's hardly able to keep his eyes open (although I'm only seeing him at the end of his day, really). He had dinner with Tamara and Yaron while I attended a meeting. Now we're all tucked in, and off to sleep.

Yahoo!!! I get to spend the whole day with him tomorrow. we see the fellow from the CLSC at 10:00.

Talk to the hand

Excuse me for feeling discouraged with the medical system, but clearly, one hand knows not what the other is doing, and some medical professionals seem to be twiddling their thumbs when there’s real work to be done.

We arrived on time for our MRI follow-up appointment with Dr. Mohr today; 12:30 on the dot, (which really means five minutes early; I learned this from my parents. Gilly, on the other hand, tends to travel El Al style; for those unfamiliar with this reference, it stands for ‘every landing always late). At approximately 12:40, Dr. Mohr passed us by and waved, smiling politely. His neurosurgical nurse, Chantal, greeted us similarly a few moments later as she whizzed by.

By 1:00, I sensed the now too familiar churning feeling in the pit of my stomach. Something was up. There were no other patients waiting to see Dr. Mohr. What was the hold up, I wondered? At 1:12, the secretary informed us that they are experiencing technical difficulties in receiving the results, so Dr. Mohr would like to apologize for the delay. This made little sense. The MRI was done on April 25th. Someone either forgot to do his / her homework, or procrastinated until the last minute. The results should be on hand for a follow-up appointment, I would think, and carefully perused beforehand.

When we were escorted into Dr. Mohr’s office he informed us that the MRI shows a change, and this needs to be interpreted by Dr. Sultanen. He asked if Gilly is finished his treatments yet (an alarming question, when the impression we were given is that they work as a team. How does he not know this information???).

The words he used, prompted, I’m sure, by my direct, disconcerted glare, were:

“We see the traces of the biopsy. It is in the right spot. There appears to be more enhancement. It is catching up a little bit of contrast.” What any of this means is beyond me, but I can tell you that his next line confirmed that it wasn’t good news: “He’s on the right treatment.” He went on to suggest that perhaps since the treatment is only at the beginning stages, the regime will be altered. This is not comforting to hear, especially without proper information.

Dr. Mohr is the fellow who suggested we wait 8 weeks and do nothing, and watch the pattern of growth (or lack thereof0. In a perfect world he’d admit his faulty judgment and confess, “I stand corrected. It’s a good thing you chose not to listen to my advice. At least he’s started treatment. If we had waited until after the bumbling antics of today, we’d still be weeks behind the start of treatment; no mask, no markings…” But of course, that would never happen, and to tell you the truth, it wouldn’t change the circumstances much. It would help us to feel cared for, though.

Dr. Mohr has a bad reputation when it comes to bedside manner. We never really had a problem, except that he admonished us for taking notes (which he now ignores completely). Today, we received a dose of it, and the taste we’re left with is putrid.

I asked, “Does this mean it is no longer a grade II astrocytoma?” He said, “I repeat, Dr. Sultanen will have to interpret the results.” At this point, he was standing, attempting to usher us out of his office after a 4 minute visit. He explained that it is no longer an issue related to neurosurgery. It is an oncology matter, and we’ll just have to wait and see Dr. Sultanen. Gilly then sheepishly, innocently and hopefully asked, “Is this good news?” Dr. Mohr impatiently reiterated the response, “I repeat…” The rest fell on deaf ears.

Why call us to a follow-up appointment of this nature? It seems cruel and unnecessary. Either have your facts in order, or cancel the appointment until you do. All this appointment did was stir up further anxiety due to a little bit of disturbing information that we are left to mull over until the ‘team’ (and I use this term in a loose sense) gets their game plan in order. Sheryl’s notes explain that Gilly is supposed to see Dr. Sultanen every Wednesday. I understand that last Wednesday, we were only 3 days into treatment, but will he see us tomorrow? If so, when? Do I dash over for the scheduled radiation session (4:30) in case he graces us with his presence? Jerry is scheduled to take Gilly because I have another Vanier commitment tomorrow evening, and I was hoping to remain in St. Laurent between 4:30 (when I finish teaching) and 6 (when the meeting takes place) to attend to some work, but I feel I must be there if and when Dr. Sultanen spills the beans. I guess I’ll try to contact his nurse tomorrow during the day and see if she can tell us more. That way I’ll know how to manage my time. Vigit is good about returning calls.

When I arrived home to serve Gilly lunch earlier, and to take him to Dr. Mohr at noon today, I found him sitting on the balcony wearing a sunhat, petting Liylah. It was such an unusual sight. I called out, “You look like you're the mayor now.” Debra, across the street, agreed. We decided that Phil (her husband) better look out for his job. He is our retired neighbour, forever outdoors. He keeps tabs on whatever’s happening on the block. He has held the title for all 14 years we’ve known him. Watch out, Phil. Gilly may plan a takeover from his new perch!!!

I appreciate all the wonderfully generous gestures I receive daily; too many to mention them all, but you know who you are! One shining example: Last night, Anita called to offer Gilly a lift home from Dr. Mohr’s to allow me to return directly to work. I thanked her, and agreed to keep her posted. We didn’t agree on any particular location to meet; in fact, I was to call her cell phone after the appointment, and we’d decide then, based on the time, if the favour would be necessary. As soon as we moved out of the building, there was Anita, waiting patiently in exactly the right spot, as if we'd planned it in detail. An angel in disguise, I tell you.

On the whole, the fatigue is gradually setting in. Today, his answer to, “How are you feeling?” is “tired.” It’s to be expected, we’re told.

Celebration of life

Monday it is. Back to the old grind!

Gilly spent his morning ‘relaxing’ after breakfast. I dashed home from work at around 11:00 to prepare fresh potato soup to tickle his fancy. I figure it has water (he needs fluid), milk (he rarely eats food from the milk product group), green peas (protein and fiber) and most importantly it is his all time favourite. A close second is Spicy Ricey (spicy chicken soup with rice). I derive tremendous pleasure from making soup for someone in need of nourishment and nurturance, especially someone I adore. It’s comfort food of the very finest, both to prepare and eat. This habit was handed down to me by my mother.

He lapped up two full bowls, and then washed it all down with some juice. I left out a bowl of cut strawberries next to a hefty slab of watermelon, instructing Gilly to make a choice later on when he feels the need for a snack. I was thrilled to discover both options missing when I returned home at 6:00. His appetite has waned over the last few days, due in part to the 8 glasses (or equivalent) of fluid I insist he consumes on a daily basis (according to the nurses’ orders). Today, though, he ate with gusto. I was glad to be able to orchestrate it all in a timely fashion. Monday’s are almost as easy as Thursdays.

Radiation now takes place in late afternoon. Gilly soon caught onto the fact that being anywhere at 8:00 a.m. these days is a real chore; a shlepp and a half. He continues to operate on teenage hours.

Jerry took him today, and tomorrow, it’ll be Grandma Shirley’s turn. We also have an appointment with Dr. Mohr at 12:30 tomorrow. First, I’ll go to work to teach until 11:30, then back home from work to pick up Gilly, then to the hospital, then back home to drop him off, and back to work again. That oughta suffice for one day, n’est pas? I do not want to miss the appointment, so I need to prioritize my schedule accordingly. Thankfully, this hectic schedule will soon subside. We both look forward to that. I strongly believe it is beshert; I still need to be in the college on a regular basis for the first few weeks of Gilly’s treatment, before the fatigue kicks in, and then I’ll be able to do increasingly more work from home, stuck to my guy like the glue that holds us together.

All in all, it was an uneventful, pleasant day at the Schwager homestead. We’re about to light the Bar-B-Q for dinner. A demain…

****NEWSFLASH****Just heard news that Samuel Eduard Blauer was born at noon today to Andrew and Nicole. A bouncing 7 pounds, 13 ounce baby. Uncle Butch and Cathy are bursting with happiness. Cathy felt we deserved a lift, so we were first on the list to receive the news. Mazel Tov to all.

Words of wisdom

In my high school yearbook, I quoted a verse from the musical Fiddler on the Roof. The song is titled, “To life” or perhaps, “L’Chaim.” Makes no difference.

Our great men have written words of wisdom
to be used when hardships must be faced.
Life obliges us with hardships so the
words of wisdom shouldn’t go to waste.

At seventeen, I was quite taken with these profound lyrics. At 49 years of age, this same verse keeps popping into my head. “I wonder why?” she asks, facetiously.

Luckily, life obliges us with pleasures, even as the hardships are being faced. These days, I savour every moment I spend with Gilly, I hug my children that much tighter (and my motherly embraces have always been pretty tight to begin with), I treasure every moment shared with family and friends, and I am eternally grateful for the loving support that cushions our jagged, oftentimes frightening experience, thus softening the blow.

Gilly found it too cold today to begin assembling the fence, but there was no shortage of offers to help get the project started. Even Susie showed signs of willingness to start digging. But the foreman calls the shots; we’ll just have to wait for warmer weather.

It was a Birch Point sort of day. We had a short, distant, but unquestionably cherished visit from Shelly. ‘Short and distant’ because she has a cold; she wouldn’t even think of crossing the threshold, for fear of spreading her germs around our living space. ‘Cherished’ because she lives in Toronto; it’s always a treat to see her when she’s in Montreal, even if just for a few moments. Next, Harold showed up, hammer and all, poised to assist in constructing the fence. Gilly and Harold have teamed up on previous occasions; deep down in Harold’s well, and up high on the cross-country trail. A visit was all Gilly desired, so the hammer was put aside for another day. Joey and Susie arrived, prepared to wield some tools or take me for a walk, whatever Gilly’s pleasure. We enjoyed some Grand Lac Long lore, and then went our separate ways to allow Gilly some down time.

It was a social day. Gilly took pleasure in every moment. No further changes to his health status are evident as we move into the second week of radiation. His mood remains as positive as ever. Last evening, we discussed how he was feeling emotionally, and, with some prodding on my part to get him to open up, he declared that his life has fallen apart. I assured him that when the treatment is all done, we will work with what we have, and begin a new life together. He replied, “Not a chance. I’ll be going back to what I was doing before.” If that’s not the essence of hope, I don’t know what is!

If you have sent me a message via my McGill email recently, please excuse my lack of response. I’m usually diligent about replying, but my server is down and I don’t know why. I can only be reached through Vanier until I solve the mystery.

To everything, there is a season

Rainy as the day was, the sun managed to shine through in the end. Our plum trees are in full bloom today as the magnolia petals gradually drift to the ground. It’s wonderful to relive the promised cycle of garden growth. Next in line are the lilacs, peonies and irises (I forget which order, but there certainly is one). Today, while raking the fallen petals, I noticed the remnants of Gilly’s recent handiwork. He evidently managed to clear the ground around the rosebushes, lilies and other plants when I obviously wasn’t looking. I have always appreciated his efforts to maintain our garden, but I never imagined how much meaning every gardening task he undertakes would hold for us this year.

Gilly slept until 5 a.m. in his favourite chair. He crawled into bed and slept until 9:30. When he finally awoke, I commented, “You’re just like a teenager; late to bed, and late to rise.” I was glad to see that he rested well, and still shows no signs of nausea.

He spent the better part of the day ‘relaxing’ as he calls it. Really, it is more a matter of inactivity due to difficulty with sight and right side of body coordination. He explained to me and Susie why he would not like to join us at Home Depot, “It’s just too hard to walk.” But he mustered up the strength to make a trip to Reno with Yaron to buy supplies for Liylah’s new backyard fence. He set that as a goal for himself, and the trip seemed to perk him up. I guess he saw it as a man’s job, because he could have purchased similar supplies at Home Depot.

He set out the materials under our grape arbor (which we call our Sukkah), lying in wait for the next nice day to signal project commencement. We hope to work as a team to complete the job. Tamara is keen to assist and Max has agreed to lend a helping hand.

We just arrived back from a trip around the block with Liylah, the dog with the fruit fetish. Yesterday, I returned from work to find she had dates in her bed. I suppose she feels she should be following the Canada Food Guide, and not forced to eat lamb and rice on a daily basis without the pleasures of fruits and vegetables. Maybe she has something there???

Daddy, daddy, daddy, daddy, good Shabbat

Today was no the run of the mill Friday for me. All semester long, I have been sitting at the helm of what is known as the Advisory Committee; a group of Vanier Early Childhood Education faculty members (our Fieldwork Committee) and ‘cooperating educators’ from various day cares across the city who accept our students as volunteers (to do their stage / practicum). One of our main tasks is to plan the end of the year Agency meeting, where we treat cooperating educators and directors to a thank you luncheon / meeting. This year, I was Fieldwork Coordinator for the first time. I had to learn to chair the meetings and plan this event with a slight twist; it is our 30th anniversary. Our group was determined to celebrate the milestone in style.

January rolled around and plans began to take shape. February arrived and I was faced with the worst crisis in my life. I stepped back, and the other committee members moved ahead. It was disorienting. When I returned after missing two meetings while Gilly was in the hospital having one surgery after another, I was totally discombobulated. I am so fortunate to have amazingly devoted colleagues. I coasted along with the remaining meetings and preparations, but never managed to fully fall back into step.

I haven’t slept well for nights, worrying about how the whole shebang would go down. I’m not the greatest party planner at the best of times (my children walked me through the steps of arranging their Bat and Bar Mitzvahs, to be honest), but I really had my doubts about today. I awoke at 5:00 this morning wondering, as I often do, how I would get through my day. How would I manage to appear ‘normal’ at this time in my life? I feel like an imposter in my role as Fieldwork Coordinator. Won’t everyone notice? How would I smile, and greet others with warmth when I really don’t want to be there; I need to be home to ensure Gilly drinks and eats and is as content as possible. How will I find the place???? It’s across the street from the Bifteck, and I ALWAYS get lost trying to get to the other side of Cote De Liesse, no matter how many times I am given clear instructions.

I got lost, of course, and arrived 4 minutes late. I wept uncontrollably. When I arrived, I shakily informed Cathy, my dear, most special colleague, my savior in so many ways, “Isn’t this crazy? I don’t cry about cancer, but I cry when I get lost.” It was my own private moment; a breaking point, if you will. I think I needed it. After a few whimpers, swiftly gulped down, I was able to smile and carry on with what needed to be done (more on the periphery than I would have liked to be, but there faking it rather well, I hope). It never ceases to amaze me what we can accomplish during trying times.

Gilly just arrived back from his 5th dose of radiation. Gilly seems to be in the same condition as he was yesterday. Still grinning, mind you. Jerry allowed me some free time by chaffeuring Gilly to and from the hopsital, which is why I managed to get this blog out before supper. We are off to Susie and Joey’s for Shabbat dinner. One week down, 5 to go. Looking forward to family time this weekend (speckled of course with some grading of papers. One more week and a bit left of teaching, then it’s meeting time at the zoo).

Gilly says, "Everybody, have a good Shabbat." I say, "Gilly, Gilly, Gilly, Gilly good Shabbat" Tamara used to say, "Daddy, daddy, daddy, Daddy good Shabbat."

Liylah is a fruitcake

Gilly is still managing the treatments well in that he is not nauseous. Spending the whole day with him revealed some truths he’s been harbouring. He admitted to me around mid-morning that he cannot really see. His right side is not responsive, to the point that he feels he cannot walk properly. He drags his leg and this makes it very difficult to move around. He asked to see Dr. Wise again to address his deteriorating vision.

I was skeptical. I remembered that swelling is a result of radiation. They warned us of this, and so I wondered what an eye doctor could do? A new prescription would surely be ridiculous at this point, but I agreed to make the call. I spoke candidly to the receptionist, expecting her to consult with Dr. Wise, quite confident he would say to wait until the treatments are done and then he could reassess. She simply asked, “How’s 3:00?” I felt I owed him the respect of allowing him to pursue all possible solutions.

Dr. Wise examined Gilly and determined that there is swelling in the occipital lobe of his brain, the area responsible for perception. This is one of the 4 targets for radiation, and so the swelling is to be expected. Nothing can be done except prescribe steroids. He’s already on Decadron, so, as uncomfortable as it is, the waiting is game is the only other alternative. We were told by the resident at the Neuro that the swelling ought to reverse itself a couple of months down the road. I told Dr Wise that I had mentioned to his receptionist the fact that Gilly had started radiation, expecting that we would be advised not to bother coming in. Dr. Wise says he deserves an answer to his query, so it’s good that we came in. At least he now knows why he cannot process visual information, and that his acuity is fine. He predicted that the condition may only be temporary. Gilly was less than enthused with the result of his visit.

Tonight, Gilly is resigned to the fact that he has no choice but to wait it out. He believes that the treatment must be continued, and that this is one of the discomforts he will have to bear. “What can I do?” he asked rhetorically. “You can fight like hell!” I replied. "I am," he answered. "I know you are," I repiled.

I overheard him thank Yaron (a few moments ago) for walking the dog as often as he does. He shared that it is just too difficult for him to manage, and so he appreciates that Yaron has stepped up to the plate for him. It takes an awful lot for Gilly to admit a weakness to anyone, but especially to his son; someone he feels naturally disposed to protect. What a tender moment.

On a sweet note, our Liylah continues to amuse us with her peculiar exploits. Tamara came by for a visit this afternoon. She sat down in my favourite spot on the sofa, next to Liylah’s bed to chat with Max on the phone. She glanced at the dog, and was shocked to discover that she had taken a mango to bed with her, in lieu of her baby coconut. What sort of fruitcake have we adopted? Again, she did not bite into it. This time she was licking the fruit as if cleaning her puppy. What’s next?

Merci bien

The continued support of colleagues, friends and family just blows us away. We receive offers at every turn. You blog addicts are privy to only a small cross section of the messages we receive daily (email, phone calls and visits). There's just no end to the show of kindness bestowed upon us. The words 'thank you' could never even begin to tell you how grateful we are.

Another day passed without incident. Again, Gilly relaxed the day away, disturbed only by phone calls from his nagging wife reminding him to drink, eat and take medication. I only woke him up on one occasion, or so it seemed. We both agree that the lack of caffeine in our diet is having a calming effect on us; not the best combination in my case, with the need to work and drive. But for Gilly, it brings out his 'low key' side.

Flower power

Our favourite sign of spring is the Magnolia tree in all her glory. Be careful, though, because if you blink, you'll miss the magnificent display; it lasts but a few days.

Gittit waited and waited, but the tree teased her with velvety buds, tightly closed until she had to depart. This is the best I can do to share the beauty with my sister-in-law. The marvels of digital photography.

Gilly spent the day relaxing in front of the tube. It was a cold, rainy day, so he took it easy. The second dose of chemo coupled with another zap of radiation doesn't seem to have any noticeable effect. His only complaint was, "I feel kind of out of it." I asked him to clarify, and he assured me he's not out of it in terms of mental functioning. But, for the next 6 weeks he will not be starting any new projects, he explained, and so he feels somewhat removed from everyday life.

The tag team shuttle to and from radiation treatments is moving right on track. Thanks to Grandma Shirley and Sharon (and all others I haven't asked yet, but will pull out all Jokers when I need to), I am still able to manage my work schedule.

Gilly's watching the hockey game, still maintaining a positive outlook on the Habs' winning potential. I'm about to curl up with a good book. All is calm this evening.

Coffee break

The build up to Day 1 of treatment was considerably more stressful than the actuality of the day itself. The unknown is so frightening. Gilly awoke with a twinge of a headache, soon remedied with a hearty breakfast. Other than that, he experienced no discomfort whatsoever.

I realize that there may be a slow build up of Temodal-related symptoms (eg. nausea), but at least he did not have any sort of adverse reaction last night or today. He slept like a baby all night and ate with a voracious appetite all day today. He had two lunches, now that I think of it.

Could it be that the steroids make him hungry? His appetite has subsided a bit since returning from the hospital, but he was unusually hungry during his stay there. I hope his appetite continues to be as healthy as it is now. I stocked up on a variety of nutritious juices to tempt his palate and placed a water pitcher front and center. I'll have to call home every hour or so over the next few days to ensure that he remembers to keep himself well hydrated.

For those who do not know, caffeine is not recommended while on chemo (this one, anyway. I'm no maven on all chemo drugs). Gilly has been instructed to drink 8 glasses of fluid daily (or the equivalent; juicy fruits like watermelon will suffice, for example). One mug of coffee would be fine, but he'd need two glasses of liquid to replenish the fluid. So we are sipping Tim Horton's green brand in the morning and Earl Grey decaf at tea time. Never thought I'd see the day when decaf would make the grade in his eyes.

We both had a delicious snooze this afternoon, something Gilly does often these days, and I NEVER do. I guess caffeine-free mornings will take some getting used to.

The radiation was a breeze. Only 41 sessions left!