All is quiet on the homefront

Today was uneventful in terms of medical issues; Gilly slept in until 11:30, despite many suggestions to join me for breakfast. He ate, and rested, ate some more and took a nap, and…you get the idea. In fact, he’s snoozing on the couch as I write this message.

At least he’s eating. Either my cooking has improved or he’s just plain hungry; it really doesn’t matter which. I want to be sure to fatten him up considerably over the next few days, because who knows what will happen when he goes back on Temodal this Tuesday. I want him to start out ahead in the weight department.

I enjoyed my day; some school work to start things off, followed by dinner preparation, a few messages under my belt as the brisket roasted slowly in the oven, a delicious maple latte with Tina (the combo is hard to beat) with a pleasant Shabbat dinner as the finale. Auntie Ruth, grandma, Yaron and Fred graced our table while Liylah helped herself to one of the nougat bars I bought for Gilly as a special treat.

No news was good news

I must try to remember to be more positive; Dr. Kavan came through for us this morning. I called the number given to me by Denise, and he took the phone immediately. He started off by laughing about the lady’s knee on the scan. I held my breath in anticipation, but laughed along with him to be nice. He holds our future in his hands, after all.

He reported on the findings: There doesn’t seem to be a major change. The most recent MRI is slightly different, but this is common after radiation / chemotherapy apparently. The treatment itself may cause structural changes. He noted that changes were already apparent in April (which Dr. Sultanen had refuted way back when). I acknowledged that I was aware there was some discrepancy at that time as to how to read the ‘difference' noted. He said, “I am not concerned that much.” I only wish that he had left out the last two words, because everything else all day long was positive. He went on to say that he sees no need to change anything regarding treatment; the disease seems to be still under control, and is not the aggressive type. He advised that Gilly go back on chemo in a few days time.

He was rather chatty, and happy to answer all of my questions (regarding other medications he’s on, etc.) so I probed further. I asked how and where Gilly will continue to be followed. I shared my frustration at having to run all over town to gather MRI CD’s, and mentioned that I as caregiver need to be sane, and this sort of nonsense drives me around the bend. I was honest in stating that dragging Gilly downtown for an unnecessary appointment last week was not appreciated, and I want to avoid this sort of occurrence in future. “Please tell me exactly what the story is so that I know where we stand,” I appealed to him. He admitted that this should not have to happen again. He wants to see Gilly on a monthly basis at the Jewish to monitor his status in relation to chemotherapy. Every four months he’d like him to have an MRI at the Neuro, and then have a follow-up visit there (instead of at the Jewish), so as to tap into the expertise of the neurological staff at the Neuro. I said it sounds O.K. with me if he sticks to that system.

I admitted that it was very simple to obtain a copy of Gilly’s MRI from the Neuro, whereas it was expensive and complicated to do so at the Jewish, which was one of the annoying factors that caused unwarranted stress on my part. He agreed, and laced into the system at the Jewish when it comes to MRI’s.

We left it as such; Gilly will go back onto Temodal over the next few days (I’ll wait until after Yom Kippur, I guess). We will see Dr. Kavan next on October 12th at the Jewish.

I went off to begin my workday at 9:20 after spending time in my office (cell phone in my car) to make the call. My mom picked Gilly up after physio (I had dropped him off beforehand) and took him home. Jennifer came by to remind him to eat lunch and take medication. They walked around the block just before after lunch. She guided him through his ball exercises too (I assume; I left pictorial diagrams with written explanations, which Gilly of course is unable to read). He says he requested that she do these two extra things with him as a result of a slightly heated discussion this morning.

Just before leaving the house this morning, he refused to allow me to bring the ball upstairs, and told me to leave him alone on this matter. I try to have everything available and accessible for Jennifer so she has all the tools she needs to follow through on prompting him to eat and now to institute the exercise program as part of their regime. I put the cards on the table for him by warning him that he needs to exercise or he will become totally helpless. Apparently, while on Decadron, he must work on his quads, so this is crucial too. He took my advice to heart, it seems, and not only permitted me to bring the ball upstairs, but claims that he asked her to take a walk. I will have to contact her to give her some further information. She may not realize that he needs to be coerced into doing the exercises, and that she should not take no for an answer. This will save me the unpleasant task of debating this with Gilly every day.

In the car early this morning on the way to physio, I asked him, “What role exactly would you like me to play in your life? I want to do what’s best, but I must respect your wishes at the same time. If you really want me to leave you alone, well, I guess I may have to do so, but I worry about your health.” He answered immediately, “I want you to do just what you are doing.” “Bugging you and pushing you to do things you do not wish to do?” I countered. “Yes, you have to keep doing this.” Well that settled matters. I feel he gave me license to nag him. I’m glad that Jennifer has taken over some of these tasks so that I have less to nag about.

I met Gilly back at the Jewish at 2:55. My mother dropped him off for me so that I could work until then, which made a huge difference in my week. I now get tomorrow off to work from home.

We entered the radio oncology department and I asked Gilly to take out his hospital card. “I forgot it,” he admitted. I decided to let him take responsibility, so I asked him to be the one to go and tell the secretary (they always ask for the hospital card; I wasn’t home to remind him to take his wallet). Dr. Sultanen motioned to us from a distance to come in quickly, because he needs to leave early. We happily sauntered past the secretary's desk into the examining room.

The size of the tumour, he explained seems to be either the same, or a little bit ‘less enhancing’ (a GOOD term). Today’s news just keeps getting better. The MRI shows no swelling. The fatigue that Gilly was feeling (which sent him off on a Temodal holiday) is caused by a syndrome, as Dr. Kavan mentioned to us on the 7th. I believe it is spelled 'somnalence.' It is due to radiation. Not everyone experiences it, but it usually appears about 8 weeks after radiation (which makes total sense) and can last for a couple of months, more or less, depending on the person.

This was a tremendous relief to hear. I shared that I had spoken earlier to Dr. Kavan and provided him with the information I was given this morning. He suggested that we see him again whenever we have an MRI. He doesn’t mind if it’s from the Neuro, but I’d have to bring it to him again, because reports are not detailed enough. He said that if you ask nicely, the radiologist at the Jewish will agree to read the MRI from the Neuro, but will provide only a verbal report. I said that we don’t need it in writing because we will have this option at the Neuro, but another opinion is always welcome (especially when terms like ‘less enhancing’ are used).

Dr. Sultanen at some point during the conversation suggested we stick to one hospital. I reminded him that we chose the Jewish in June and had the files moved, but Dr. Kavan insists that it is too long a wait at the Jewish for MRI’s. He did not use the word ‘hogwash’ but his face spelled it out; he intimated that this is an exaggeration, and if we ever want an MRI done at the Jewish, he would be most happy to arrange it. I mentioned to him that in my profession, working on a team seems to hold a very different meaning. He smiled, and we discussed the fact that Dr. Kavan works at two hospitals and so is not a consistent member of the ‘team’ at the Jewish.

Dr. Sultanen left it very open to us as to how often and for what reason we should see him. He offered to review the MRI’s from the Neuro every time we have one done, and to see us after having a chance to compare results. He said we are free to call him if we have any questions or concerns and he would be happy to meet with us at our bidding.

We left the hospital as if walking on air. When we arrived at my car I mentioned that I found a legal spot without a meter. I admitted that I saw this as a sign of good things to come today, and my superstitious thoughts were validated. While driving, I looked over and caught Gilly laughing. I asked, “What’s so funny?” thinking he was laughing at my driving skills (which would not be surprising). “Nothing’s funny. I’m just happy about my results.” Gilly has probably been more aware of the gravity of my worries than I had thought.

A huge weight seems to have been lifted from our shoulders. I know I’ll sleep soundly tonight.

Still weighting

Thanks to Joey’s excellent MRI CD bootlegging skills, all CD’s are in the hands of the professionals who requested them (and even one who didn’t; Dr. MacDonald was surprised to receive his copy, but I asked him to keep it on file anyway. He had mentioned looking at it a few weeks ago to see if the appetite center was affected, but perhaps was looking for the report rather than the MRI itself).

The results are still pending, but a complete set of the pieces to the puzzle are in the box, ready for assembly. It is interesting to note that the Jewish General charges the patient $25.00 for a copy of his MRI on CD which takes days to process, and they are very particular about who picks it up, paying special attention to the signature on the request form. The MNI, by contrast charges nothing, and they prepare it by the next day for anyone to pick up, signature or no signature.

I called Denise, the neuro oncology coordinator at the Neuro on Monday morning because she is the one I was instructed to leave the CD’s with for Dr. Kavan. I wanted to know her schedule, so I could drop the CD’s directly into her hands, rather than have them go astray. I also had to pick up the MRI CD from the Neuro on the same day for Dr. Sultanen, but only after 1:00 P.M. When she understood my dilemma (I would have to go twice to meet both deadlines) she asked me to hold the line; she arranged to have the whole kit and caboodle take place in one fell swoop. I was so relieved to find a human being on the other end of the line.

I decided to go one step further and ask her to find out from Dr. Kavan if he expects me to keep our Thursday appointment with him at the Jewish (as scheduled on September 7th before he realized the MRI findings would be questionable). She called me back today to say that no, I should call him tomorrow morning instead. She left me a number with an extension. I wondered if I’d actually find him on the other end! She also told me to cancel the appointment at the Jewish.

I was at the Jewish this afternoon to see the CNR team, so I decided to cancel the appointment for Thursday in person. The secretary was surprised, because my appointment was already cancelled by someone else and rescheduled for October 12th. I was perplexed. When I arrived home there was a message from Dr. Kavan’s secretary at the Jewish saying he’d be out of town on Thursday (tomorrow) and so the appointment is rescheduled to October 12th. The prospect of speaking with Dr. Kavan tomorrow morning seems much less likely now. Oh well, we’ve waited for news since August 30th, what’s a few more weeks!!!

We will see Dr. Sultanen tomorrow afternoon, so we may get some preliminary findings from his angle. He only received the CD today (I dropped it off on the way to the CNR clinic), so I’m not sure how detailed his response will be. I am curious to hear what he has to say.

One thing Joey noted when copying the CD’s is that each institution’s MRI format is different (by now, he’s see the MRI from Clarke’s, the Jewish and the MNI). We even caught a glimpse of some lady’s knee on one of them! It is apparent that comparing them will more than likely be a challenge for anyone who attempts the task. It is crystal clear that from this point on, we will be sure to have the MRI done in the same place, so as to avoid all this nonsense and confusion. The jury is still out as to where it ought to be, but the information does keep pointing towards the neuro, for obvious reasons.

The good news is that Gilly gained about 3 pounds since September 7th. His appetite has been increasing steadily, to the point where I could almost describe it as normal. We don’t know what to attribute this to, since he started the anti-depressant and the steroid at the same time as taking a holiday from Temodal, but unquestionably the indicator on the scale is moving in the right direction. Nelda offered Gilly one of Dr. MacDonald’s fresh apples from the market, and he gladly took it and ate the whole thing. It was so large that I was sure he’d hand it over to me to finish, but he polished it off and smacked his lips.

Mood too has improved. When I call home during the day and ask, "How are you doing?" I receive a cheerful, "Great!" That's more like the Gilly I once knew. He’s more wakeful in the evenings, but tends to sleep in very late unless wakened. Today he was roused from bed to answer the door to Emma, his friend from the fruit store. She called last night to ask if Gilly would enjoy a visit. I hardly expected her to find him in bed! She came bearing gifts; his favourite fruits. He enjoyed the visit immensely, and I'm thankful she was there to get him up to face the day.

Later on, while we were at the CNR clinic, our silly dog managed to kidnap one of the enormous mangos to take to bed with her. She really is a card, this hairy (and I do mean hairy) fruit thief. She would have made an amazing mother; so nurturing.

We finally have a fence. It’s terrific, except for one slight problem; the dog can crawl under it with ease (or so I would imagine). The installers were so proud of their work at days end; they failed to understand why I was so irate when I noticed the gaping holes. Jimmy, who I understand now is a salesman and knows nothing about building a fence, met us way back in June (I think) and told us to take down all the foliage to make way for the fence. Unfortunately he failed to consider the need for the bottom of the fence to reach the ground or thereabouts. He knew it was for our dog. I mentioned this several times as being the central reason for a fence. The fence does hug the ground in some areas, but not everywhere. This is a huge problem. The owner of the fence company promised to come and take a look to see what can be done to solve the dilemma. It’s back to the drawing board for a while longer.

I am not amused. I was hoping to close this chapter by the weekend, but the conclusion hasn’t been written yet. In the scheme of things, it’s not that serious; I’m sure we’ll think of something, however my nerves are shot from all the serious issues still pending; I am not as laid back as I’d like to be.

I cannot begin to express the magnitude of our gratitude for the acts of kindness that continue to come our way. We have received gifts, offers of every kind, visits, invitations, homemade goodies, phone calls, emails, blog comments, care packages and more. It is obvious that people care, and this is demonstrated in so many ways; all gestures are deeply appreciated, even if not acknowledged in a timely fashion. Time has taken on a whole new meaning. I need one more day at least to be added to every week; preferably one on the weekend (or mid-week with weekend properties). I can dream, can’t I?

I must say that my time at work is getting easier as routines fall into place for Gilly in terms of eating both breakfast and lunch. Everyday we solve another matter, and life improves for us all. My days are packed during the week, but I am less stressed out over Gilly’s daily care. I can focus on my work more, and can actually say that this week’s teaching experiences felt downright gratifying. I have been enjoying my Tuesday Yoga sessions and Wednesday walks with friends at work; a break during the workday is rejuvenating. Everyone seems to echo the same sentiment; you’ve got to take care of yourself, Cindy. I’m trying, people. Squeezing some fitness into my week is a giant step forward.

New directions

I could tell that the tides were turning on Thursday evening of this past week. I was lying in bed engaged in a coughing spell when Gilly appeared in the doorway. “Are you O.K.?” he asked caringly. I was taken aback; he seldom moves from his couch during the evening, and rarely takes notice of what goes on around him. “I’m fine,” I assured him. In the wee hours of the morning, I went to the bathroom. Upon return he questioned me again, “Are you sure you’re all right?” “Why?” I asked. “I just went to the bathroom like I always do in the middle of the night.” “It is the way you’re walking,” he responded. “You look like something’s wrong.” How very perceptive of him to notice that I was feeling uneasy and wondering if I’d be able to work the next day.

I woke up for work with a scratch-free throat. I firmly believe this has something to do with his show of concern; he magically healed me with his own burst of strength. I know that he cares deeply all the time, but expressing this is rare these days. Perhaps it’s because he’s at a loss as to what he can do about it, and feels badly that I have to go on managing pretty much everything regardless of my state of health or fatigue.

There have been other changes for the better in terms of willingness to socialize, a more cheery disposition, appetite and a regained sense of hope. He attended two Rosh Hashana dinners and held his own in the consumption department along with the rest of us (well, I suppose I beat him in the dessert department, but that’s nothing new). I gave him the opportunity to sleep to his heart’s content yesterday (until 2:00 P.M.) to allow him the opportunity to enjoy the evening’s festivities which technically cut into his usual nap time. It worked. Everyone who saw him last night would agree; he was in rare form, relatively speaking.

Yaron has changed too. Pretty soon, I’ll come home and fail to recognize my co-inhabitants! I arrived home on Friday afternoon in a mad rush to get ready to go out for dinner. Luckily I was not responsible to make dinner this year; it would have surely been take-out. Yaron asked a favour of me as soon as I walked in the door and I responded by spewing out all I had to do in the immediate future, including the laundry; I had items of clothing in there that I needed for the evening. “I did it, mom,” he humbly informed me. “Did what?” I asked absent mindedly. “The laundry,” he supplied. I put the clothes in the dryer this morning and put another load up to wash,” he announced. The gesture blew my mind. I stood up and took notice of how many notches in maturity he had recently climbed; it’s initiating the assistance without being asked that makes all the difference in my harried life. I was touched, relieved and thankful all at once. When you least expect it, your children demonstrate all you hope you’ve taught them over the years. It’s beautiful. It must have been the love that I added to the apple crisp on Thursday!

We have some decisions to make in the next little while as the doctors take their sweet time reading the MRI information from their respective standpoints and hospitals (ridiculous, but true). Gilly’s right side is much stiffer than before (or so it seems to my untrained, yet loving eyes). He resembles Twiggy, has little energy, yet his mood seems to have improved. He does not initiate self-care, but manages to care for himself when reminded. He does little with his time, but will accept invitations to walk when prompted (as long as the warmish weather holds out; I worry about his willingness to move outdoors once the snow arrives). So, what alternatives are available out there for us to try? With so little free time on my hands, and various other pragmatic constraints, it may be tough to find answers, but western medicine has let us down in the recent past, so I have to work on expanding the possibilities.

George shared a joke with me the other day to help lighten my mood, and it really is very apropos to our current circumstances:

What is the difference between doctors and G-d? Answer: G-d knows he’s not a doctor. (sorry doctor friends and compassionate doctors out there; it is not meant to be a blanket statement on doctors. I hate the old adage about teachers that my father used to remind me of when he wanted to pull my chain: If you can, you do. If you can’t, you teach).

I leant of the term ‘holistic’ from an educational angle a number of years ago, but never fully appreciated its medical significance before now. The western medical world compartmentalizes a person; each specialist examines you from his / her own standpoint. Luckily for us, the CNR team is a glaring exception to this rule. The professionals involved genuinely take the whole person and his needs into consideration. The CSSS is structured in somewhat of a holistic manner, and so we have had a modicum of well rounded services, but not nearly enough. It would be too much to expect, given the resources they have available. We have some leads, and I hope to pursue them this week as the MRI’s are analyzed and compared.

L'Shana Tova

I was surprisingly productive today after yesterday’s ordeal. By 1:00 P.M. I had swept up Liylah’s hair, welcomed the fence fellows, arranged to have the MRI CD’s made at Clarke’s and at the Jewish, sent off emails to Nelda and Dr. Sultanen regarding yesterday’s events, swept her hair again, drove Yaron to school so I could pick up a book I mistakenly left on my desk (2 birds with one stone), did a food order (are you tired yet?), swept up more dog hair and accomplished sundry other tasks.

I managed to drift off to sleep by about 11:00 P.M. last night, only to be awakened by a bouncing 18 year old returning home from hockey with good news; they won! I’m so thrilled that he managed to make it on the team of his choice (Junior AA’s). He deserves some pure, unscathed good news, in my books. I managed to return to my slumber a couple of hours later, which allowed me enough Z’s to operate much more normally today; not fueled by adrenaline only.

Dr. Sultanen responded to my email soon after reception, and said he’d be happy to look at both scans. All I have to do now is reverse the procedure and have the MNI make a copy of the MRI (are you still with me?) to bring to the Jewish. He sent a second email as an afterthought; if I get it to him a few days before our appointment (scheduled for this Thursday) he will have ample time to review it in advance. He left off by advising that all tests be done in the same hospital, to make things easier. I agree of course, and explained that it was never my intention to cause such confusion.

Let it go on record that I did not bash Dr. Kavan, but I did present the facts that Dr. Sultanen needed in order to answer my questions: should we meet as scheduled if the MRI results are not available at the Jewish? If so, what might I do to help ensure that the scheduled appointment is not a waste of everyone’s time?

I am duly impressed with his level of professionalism (and I have been from the get go) and his responsiveness; his willingness to communicate with me as a human being. When we see him this coming week (if of course I am able to access the MRI CD from the MNI in good time; yet another trip to the other side of town during my work day!), I will ask him if he can recommend another neuro-oncologist, at the Jewish. I believe in gathering information. I do not have to act on it, but I can certainly add to my medical files, now organized by category and bursting with papers.

Brad from the CSSS was here today. I was home coincidentally (I switched my Thursday fieldwork day to Friday this week), and so I benefited from his visit; venting towards an objective, sympathetic ear is healthy. He asked how things are working out with Jennifer (the pseudonym for the home care worker who visits Gilly twice a week to ensure he eats lunch. He’s covered every other day, for the most part). Gilly reported that he likes her. Brad asked if she could stay a bit longer and help in any other way. I jumped at the offer, and suggested she take a walk with Gilly around the block, and then encourage him to do his exercises. He agrees that it would be a fantastic idea, and promised to ask her to do this from here on in. He said that her initial few visits were on a trial basis. Jennifer reported on the case to the team last week, and they decided to make it a permanent arrangement. If necessary, we can request more coverage.

I am so relieved that the ball is rolling in the right direction in this regard. It is a good example of trust and persistence. I trusted that she made a human error and would be careful not to repeat the mistake. Brad persisted with his request to the CSSS on my behalf to provide this service, even though they shot down the idea at first.

I woke up one day this week to a silent household, as usual. My two men sleep long past my own personal wake up call (6:00 a.m. most days). I always think of my mother-in-law Sema when I use this quiet time to my best advantage; she did this when Gad and Gittit were young. I believe she is actually still in the habit, come to think of it.

I noticed a note scotch taped to the kitchen counter the other day in Yaron’s handwriting, saying: “Can you make apple crisp? Y?” I took a step back and realized how long it had been since anyone has spontaneously requested a particular dish of mine. Needless to say, I managed to put a full course dinner in the oven his afternoon because I was home during the day long enough to make it happen. I prepared a large dish of apple crisp for dessert.

It is so important to have kids around (even though he’s way bigger than I am at this point). They help to remind us of the warm and delightful side of life; the importance of family and tradition. Yaron told me this evening that he often orders apple crisp when he goes out to eat with friends, but it never tastes as good as mine. I needed to hear that tonight from my precious boy.

Tamara was unable to be here for dinner this evening, despite my zealous preparation efforts (a party-like meal; everything is relative. Who has time these days to fuss with family favourites?). It’s tiring for Tamara to hold down a job and attend school. She and Max graced our table last night, though. Actually, they took charge and put a delicious Bar-B-Q together in no time at all. We had some laughs and I thoroughly enjoyed the bubbly, ongoing conversation that ensued. Their purpose was to support me after hearing the news we all thought I would hear yesterday. Who knew that we’d hear no news at all!

The festivities begin tomorrow evening at the Friedman’s, and continue at my mom’s on Saturday night. I’m expecting a visit from Elly et al. from Philly on Saturday. The electronic greeting cards (and even some by snail mail) have been filling up my inbox all week. The phone keeps ringing with warn and friendly voices on the other end, wishing us a sweet and healthy New Year. I extend these same wishes to all of you. L’Shana Tova. Sweet and healthy is in order for us all!

The whole megillah

It’s important to go back in time a bit to put this whole affair into perspective:

We originally chose Dr. Kavan and his team at the Neuro to care for Gilly, since he advised us that in matters of the brain, the Neuro is far superior to the Jewish. We accepted his advice and signed on for radiation at the Mtl. General (as is the system) and oncology follow-up with the Neuro.

We were bumped from the General as the waiting list was too long, but assured that we would have radiation at the Jewish and be followed otherwise by Dr. Kavan at the Neuro.

Due to this ‘break from typical’ protocol, Gilly seemed to fall through the cracks. The oncology nurse at the Neuro didn’t answer my calls when I was concerned about Gilly having been in contact with Pneumonia, but the radiation nurse from the Jewish did. This was repeated when I called about Gilly requiring dental work…his blood was not taken at the Neuro ever, so Dr. Sultanen had it taken at the Jewish and so on…

I complained to Dr. Kavan, and as a result he ‘flippantly’ said to just call his secretary and have the file switched permanently to the Jewish. I did so, and by July we finally had it all changed over.

We have been served extremely well at the Jewish through the Oncology Dept. and its many programs, notably the CNR program, which we rely on tremendously to track and support Gilly’s overall well being.

When we saw Dr. Kavan in July for follow-up after radiation, he asked us to have the MRI done at the Neuro before our next visit because he prefers the machines at the Neuro, and said there would not be so long a wait. I made the appointment as he requested. I even had to mail out the order to his secretary at the Neuro, and the MRI was done on August 30th.

We met with Dr. Kavan on September 7th only to discover that he had not looked at the MRI scan, and couldn’t access the results because the scan was sitting at the Neuro and he saw us (as he had been doing) at the Jewish. He asked me to call him at the Neuro the very next afternoon and he would relay what he assured me would be ‘not surprising’ results. He was wrong.

I called, and you who have been reading my blog all know that it took 8 days to finally get him to return my call. He proceeded to tell me that he noticed some changes compared to the previous scan, but claims they are hard to interpret. He thinks that perhaps the disease is becoming more aggressive; the biology of the disease has changed a little bit. He said his secretary would call and make an appointment to see him at the Neuro with his team on Wednesday afternoon.

After waiting all day Monday for a call, I decided to take the bull by the horn and contact his secretary myself. She said he’s all booked up for Wednesday and she received no such instructions from Dr. Kavan. I was persistent, so she went to get his chart and curtly announced that Gilly should come in for 9:00 a.m. on Wednesday. I revealed my frustration and insisted that Dr. Kavan said he’d see us on Wednesday afternoon. In truth, he had clearly mentioned the afternoon and this was now Tuesday afternoon and I had not yet cancelled my two Wednesday morning classes. She said that this would be impossible (but earlier I knew she said Wednesday at anytime would be impossible, so I pushed). I told her that my husband’s MRI shows that there has been a change; “This is a very important meeting, and I teach in the morning,” I explained. “3:00 Wednesday,” she barked. Being pushy is necessary sometimes.

We waited for 1 ½ hours to be ushered into a room with Dr. Kavan and Dr. LeBlanc. He is a neurosurgeon at the MRI, and was consulted on this matter because Dr. Kavan claimed that Dr. Mohr (from the Jewish) is out of town.

Dr. Kavan explained that the contrast material that was injected during the MRI seems to show more than in the previous scan, meaning there could be more growth. The problem, he went on, lies in the fact that he cannot compare one scan to another because the last scan was done at the Jewish. Hello! This is not new information!! He said that at the Jewish there is a policy which prevents the radiology department from comparing the old scan at the Jewish to the new scan that was done at the Neuro, even if we bring the scan over to that hospital.

I stopped him there and asked which scan he has been comparing this one to. I wondered if he was looking at this one against the one I gave him way back in March when we first saw him, or if he’s comparing it to the report on the one done in late April, when Dr. Mohr noted that there seemed to be a change from the scan done at the Jewish in February. Dr. Sultanen allayed our fears the following week, but I wonder…..

Dr. Kavan said that he has no other scan to compare it to, because they were not done at the Neuro, so he has only a written report. The first step, in his view, is to get the scans over to one hospital, and it must be the Neuro because the Jewish refuses to do this.

Dr. Leblanc stepped in to explain that the terminology used in the report from the Jewish is slightly different from that used at the Neuro. He pointed out that he has no evidence to say that there has been any change at all; it could be a matter of different descriptors. He reiterated that this is why they are still not sure how to interpret the results. For now, he assured us that there is no urgency; there has certainly not been a dramatic change.

At this point my ears started to burn. I could not believe what I was hearing. I double checked to see if I understood what I was being asked to do; bring the actual scans over to the Neuro to be analyzed. Yes, this is what Dr. Kavan suggests and is adamantly insisting I do. I reminded him that we are being seen now at the Jewish because we fell through the cracks at the Neuro, but he sloughed off the accusation and emphasized that the expertise at the Neuro is far superior to the Jewish when it comes to matters of the brain. He wants Gilly to be seen at the Neuro for all scans and neuro-oncology assessments.

So technically, I dragged Gilly down to the Neuro to sit in a waiting room for 1 ½ hours, only to find out that the answers are still not available, and that I have some homework to do in terms of running around to get the scans. I could have spent the 1 ½ hours running around attending to these matters instead of waiting for virtually nothing.

I am beginning to be increasingly suspicious of the whole situation. I admitted to both doctors that the whole affair seems rather political. “Aren’t the hospitals connected to one another?” I asked. Not so, I was told.

I asked if we could continue to be followed by our wonderful primary nurse at the Jewish, Erica, and the amazing CNR team. “Yes” he promised. It is just that the waiting period for an MRI at the Jewish is about 6 months, he claimed.

I tried to tell him that a 6 months wait is not so; Gilly had one just after the shunt was installed in late February (a week following the one we had done privately), and another 8 weeks later at Dr. Mohr’s request. After Gilly was released from the hospital in March, Dr. Mohr told us we’d be called for an MRI appointment 6 to 8 weeks later and we were. Dr. Kavan would not listen; he cut me off (I suppose too busy to listen to what he sees as unimportant rebuttal).

We were escorted out with instructions to get those scans as soon as possible. Gilly spoke up once; “How long is all this going to take?” Dr, Kavan estimated it would take only a couple of days. I revealed that last time we asked to have copies of the scan we waited at least a week; I remember having to nag them in the MRI department because family and friends world wide were pressuring me to send the information out as soon as possible for consultation purposes. Dr. Kavan used this as an example of the red tape at the Jewish.

I slept a mere 20 minutes last night, tossing and turning, wondering what news would befall us today. I’m relieved on one hand, because they did not present us with grave news, but disgusted on the other hand for obvious reasons. You have to wonder what some doctors are aware of and have the potential to become sensitive to in terms of what families experience in the face of a critical health issue. Does Dr. Kavan realize what the waiting does to us when it is revealed that the treatment may (or may not) be working. He caused this problem, in my estimation, by not being straight with us in the first place. He had no business sending us to the Neuro in late August when we had officially chosen to remain solely with the services at the Jewish. I’m guessing he knew we’d have this problem, because he said over and over again that he has several patients who he sees at both institutions.

My game plan is as follows; I will satisfy Dr. Kavan’s request, because I want the final verdict sooner than later. I shall contact Dr. Sultanen and Dr. MacDonald and explain why they are not able to see the MRI results. I must attempt to investigate the sharing of information problem further; maybe even speak to the ombudsman at the hospital(s) to ensure that we are being treated fairly (not sure when I’ll find the time to do this, but I have to consider this angle, because the mess that has been created reeks big time). Most importantly, I have to tread carefully at least for the meantime, so as not to cut off our own noses before vital information is passed down to us, and I do not want to extend the waiting period by angering Dr. Kavan.

If the experts at the Neuro can keep Gilly on as a patient regarding ‘brain’ matters, and the chemo or whatever plan for treatment continues to be followed at the Jewish, AND if Gilly’s participation in the CNR program remains an option, so be it. But if the information war persists and prevents the professionals at the Jewish who are following Gilly from obtaining what they need, the dilemma will need to be addressed further. The whole situation seems convoluted; it’s like we’re performing as players in a slapstick black comedy.

Tomorrow morning the fence crew is scheduled to arrive at 8:00. Jerry will take Gilly to physio. Once the workers are well on their way, I will go off on the ordering of copies of MRI scans mission. Hopefully I will not encounter any snags in the process.

I’m thoroughly exhausted, so sleep is what I need most right now. Good night all, and have a pleasant tomorrow.

By the by, my boyfriend of 24 years is resting peacefully on the couch, not visibly perturbed by the turn of events today, but a bit tuckered out by the ordeal of waiting around for so long. I’m off to offer him an evening smoothie before heading off to bed.

Community spirit

Gilly had another great day. He kicked it off by sharing a hearty breakfast with his son, and spent the evening as spectator at Yaron’s first hockey game of the season. We left during the third period, to prevent Gilly from turning into a popsicle. We’ll have to get those long johns out for next week’s game.

The filling of the sandwich was equally delightful. Marvin spent the afternoon with Gilly while we ladies took a walk. We met up with the men out in the garden for some final touches; the backyard is 99.9% ready for [what we hope to be] this week’s fence installation. The perennials have been safely removed and lovingly replanted in a safer location, still visible from the kitchen window (thanks Sharon). The final verdict on the perimeter of the fence has been made (thanks Marvin) and a good time was had by all. Joey dropped in late afternoon and rolled up his sleeves for a while too. This garden became a community project over the past few weeks. Gilly and I are so thankful for all the helping hands.

So that’s 2 days and counting filled with friends, family and good times. Gilly is responding positively; he’s been wakeful for significantly longer periods all weekend and has admittedly enjoyed the company.

I haven’t mentioned Jennifer from the CSSS. She did show up last week, on time, both days. In fact, Gilly was covered for lunch everyday last week, thanks to Jennifer, Manuela, Elana and Ronen. It’s comforting to know that a system can be made to work, even when it involves many different people. Gilly also enjoyed last week’s chauffeur services; my mom, Jerry and Sheryl each took a turn. We are blessed with an amazing support system, and we haven’t even tapped all our resources yet. The next step is to get Gilly out for a walk during the day. Phyllis plans to see if she can entice him to go out for a stroll with her this week. He needs to get off that couch and out of the dark more often during the day. I hope he accepts the offer. He seems receptive to the idea at this point. I’m keeping my fingers crossed.

Friendship

“What should I write about your day today, Gill? “ I asked. “It was good, he responded without hesitation. “What made it good,” I probed further. “The fact that I had 3 friends,” he answered. “Anything else, I asked. “You gotta name ‘em,” he instructed as he drifted off to sleep.

Freddie, Steven and Zel took Gilly out for brunch this morning. Gilly ate blueberry pancakes, bacon and home fries. I’m thrilled that he consumed extra calories while I took a walk with Susie to try to lose a few of my own.

The men returned and I found them out in the backyard. They helped me a great deal by continuing the seemingly never-ending task of clearing the backyard to make way for the famous fence soon to be built (scheduled for this week). The perimeter is finally staked out, after hours of negotiation.

Gilly remained outdoors for the entire afternoon, which made the day even sunnier that it really was (and by golly, it was a scorcher). Arlene and the twins arrived with Anita; the audience grew in size. It was a pleasant day; some good old fashioned elbow grease was spread around the yard; quite a sight.

Gilly did not lie down until after five; a new record. This says an awful lot about how much he enjoyed the visit. My heart is full when I witness Gilly enjoying himself to the extent he did today.

We've had better weeks. Here's to the week end.

Nothing has really changed since my last blog posting, except the world as I once knew it. On top of the medical drama I have the supporting role in, us Montrealers are still hesitantly trying to peek out from under a black cloud of horror. The events at Dawson College touched us all, some more directly than others. We all have varying degrees of resilience in dealing with tragedy, depending on many variables.

I am still shaking from the initial news of shooting and barricades. I was on my way out of Vanier when I stopped to say hi to Roy. He asked if I’d heard the news, and proceeded to fill me in. I nearly fainted on the spot. I knew Yaron was on his way over, or had already arrived, and would be heading straight for the crime scene still unfolding. I spent a hysterical half hour trying to reach him on his cell phone, but the lines were all down in the downtown area. I wept with relief when I heard his voice telling me he was hurrying out of the area, but had no time to talk.

In the end, he is safe and sound, along with children of friends and relatives we know, not to mention some people connected to me through Vanier who happened to be at the day care at Dawson at the time.

The girl who lost her life was a classmate of Yaron’s, and another of the injured an old friend from elementary school. Too close to home to bear for us right now. What was is bad enough, but what could have been is simply unimaginable.

I just received the fateful call from Dr. Kavan, telling me that Gilly’s MRI is not perfect. He noticed some changes compared to the previous scan, but claims they are hard to interpret. He apologized for not getting back to me sooner (I’ve been waiting 8 exceptionally long days for his response), but felt the need to consult with experts, since it is not clear what is going on exactly. He thinks that perhaps the disease is becoming more aggressive; those were his exact words, by the way. The biology of the disease has changed a little bit (again, using his terms), and so he wants to see us at the Neuro on Wednesday afternoon in conjunction with members of his team.

He explained that he really couldn’t speak to me until he had consulted with others, and this occurred only yesterday, and apologized for my having to wait so long. He was out of town for 4 days (which no one was able to tell me, for some reason).

Next, he asked about Gilly’s current condition, which I filled him in on. He is still very lethargic, although there has been a very slight hint of improvement to overall spirit (smiles a bit more easily, and no longer paces; lost the jitters, probably due to being taken off of the Marinol). I admitted that I do not know why his mood is a bt better, because he started on an anti-depressant at the same time as restarting Decadron (the steroid). He said it is less likely to be attributed to the anti-depressant, which tends to take a while to have a marked effect. He did not hurry me off the phone, and showed sincere compassion in his voice, to the point that I was no longer resentful towards hm.

I remember when Dr. Mohr had us wait outside his office, only to be told that he too did not understand the change in MRI from the previous one. We were tortured by the waiting game then as well. Which doctor treated us more honestly / humanely? It’s hard to say.

I wonder now which previous MRI Dr. Kavan is comparing the August 30th MRI to??? That drama involving Dr. Mohr went on for quite some time as well, and was not necessarily fully addressed. Is Dr. Kavan is comparing this MRI to the one taken at the Jewish just after Gilly arrived in February (we gave him the CD), or to the one taken just before radiation / chemo started in late April. At the time, Dr. Sultanen explained that it was a matter of taking samples of slices made in slightly different locations (something like that). I wonder….?????

I questioned why we have to be seen at the Neuro, since we have chosen to be followed at the Jewish. He said that he can only read the scan at the computer over at the Neuro. I reminded him that Gilly’s doctors are waiting for the results at the Jewish (Dr. Sultanen and Dr. MacDonald). He explained that this is much more important at this stage of the game, and he feels strongly that he needs to follow through at the Neuro. I am in no position to argue, so I will postpone Wednesday’s appointment with the CNR team, and I have already postponed the appointment with Dr. Sultanen (scheduled for yesterday originally), since they do not have the data they need in order to proceed. I will have to take that fight up again later, when this Wednesday’s meeting is said and done.

Dr. Kavan advised me to remain strong (as if I have a choice). He said that Gilly’s condition is not likely to improve. I really was not expecting that it would, but hadn’t lost hope. This piece of advice pushed me down a notch, but did not rob me of my right to believe in the possibility that Gilly could be made more comfortable, or that an alternative cure could be somewhere waiting for us on the horizon. One must never give up hope, because it is what fuels our energy to live life to its fullest.

We’re off for Shabbat dinner at Fred’s. I need to be surrounded by chatter and loving people right now, and my wish has been granted. Gilly's coming along for the ride. I hope he finds a cozy spot to enjoy the presence of people as well.

Losing perspective

Gilly was in good spirits last evening, relatively speaking, and so he joined us for supper, then bid us goodnight. We saw a movie after all. The story focused on the theme of ‘dancing’. I couldn’t help but remember how much Gilly loved to dance, and what an excellent dancer he was. One of the first eerie signs that something was terribly wrong surfaced at Daniel’s bar Mitzvah in Toronto last February; Gilly was totally unable to dance.

I was up bright an early preparing for the yard crew this morning; Cathy and her gang came by to help saw and cut and trim some more foliage to make room for the famous fence. Aside from a walk with Sharon, I spent the better part of the day out in the garden bagging away. I lost count of the yard bags we filled. Yael and Elana helped later this afternoon. I was thrilled to have the help and most of all the upbeat company.

Gilly spent most of his time indoors. He did not seem quite as cheerful as yesterday, but remained awake for most of the daytime hours. This is a huge improvement over last week’s sleepiness, so I’m estimating that he’s either continuing to move further uphill or, at the very least, holding his own. When you live with someone, it is harder to detect the little changes sometimes; I often feel I lost perspective.

Tomorrow he will go to physio at 8:45 (I’ll drop him off) and is scheduled to arrive back home at about 10:00 (thanks mom). Yaron will be home to greet Jennifer from the CSSS at 11:30. I hope this works out well. While all this is going on, I will be at work, trying to focus on necessary tasks. Unfortunately, I will have to pursue Dr. Kavan, to try and pin him down so that we can get some answers. This is necessary, but difficult to accomplish while at work. I have some leeway with my schedule on Mondays, so hopefully I will manage to swing it; enough is enough!

Again, I will not promise to post again until Thursday or Friday, so have a great weekend; think positively and send those vibes our way.

Sociability

A freilach atmosphere enveloped us all as we met to celebrate Aaron’s 18th. There were about 20 people, all speaking at once, as is our collective habit; the noise level was intense. Gilly mentioned this to me early on in the evening, so I suggested he move downstairs (as he would at home) and he agreed. When I went to check on him about ½ hour later, the room was bare. I moved down another level and found him sitting amongst the young people, much as he did last week at Tamara’s birthday dinner.

He lasted clear through to dessert without once referring to making plans for departure, which is a very good sign. He ate and interacted slightly more so than usual, although consistently moved away from loud chatter as the evening unfolded. I remained until after 11:00, because the oldest member of what my father coined as the class of ’88 (Robert, Yaron and Aaron) offered to take his uncle home at around 10:00 P.M. Thanks Rob for giving your aunt some extra time to enjoy pleasant conversation (not to mention yummy desserts).

Today brought little change, except that Gilly slept later than I’ve been permitting of late. The medication that he’s on can be managed easily around a more flexible schedule, so I figured if he needs his sleep after being out late, he should have it.

Yaron asked if Gilly would like to accompany him to Play it Again Sports to look for hockey gloves. I was thrilled to hear him accept the invitation.

I would go so far as to claim that Gilly is ever so slightly on the mend; moving in an uphill direction in molasses like fashion. It’s a huge improvement over slipping rapidly in the opposite direction.

Susie and Joey are expected any moment; arms laden with leftovers from last night’s feast. I hope the upbeat company will help stimulate appetite; I know it will mine (although appetite unfortunately has not been a problem). If Gilly wants to check out after awhile, we’ll go off to the movies. If he surprises us and becomes sociable, we’ll feed into his mood with great pleasure. We’ll play it all by ear…

The waiting game

Gilly’s energy is marginally better today, and so are his spirits. His appetite is pretty much the same. He was more jovial than usual last evening, so hopefully he’ll be the life of Aaron’s 18th birthday party this evening (we’re preparing to leave in a few moments). He’s decked out in that handsome sweater he wore last Sunday to the cousin’s club, and he looks smashing in my [perhaps prejudice] estimation.

Dr. Kavan neglected to get back to me today, for whatever reason. I dutifully called as he requested and left a detailed message, but he did not respond. He may not be aware of what it is like on our end. The waiting game when it comes to anticipating MRI results is agonizing. Additionally, we await instructions as to whether or not to continue with Dilantin. I suppose he has some all important, important doctor business excuse, but it’s the human aspect of medicine that is lacking in this particular situation.

We have no choice but to bear the anxiety of waiting through the weekend. Gilly is not on edge, actually, because he is not 100% aware of the potential implications. I suppose it is better that way. I used to tell him to go to sleep and I will stay up and worry for him (when the children were out late, especially at first). This is a similar circumstance, only I don’t need to tell him; he’s somehow at ease knowing that I have the situation under control (as best it can be).

Speaking of doctors and their bedside manner, we bumped into Dr. Mohr at the hospital yesterday and he greeted Gilly pleasantly by name. I was impressed and I told him so. He does seem to have some people skills, it turns out. It does make one feel somewhat important to be remembered.

Bon appetite

Gilly’s weight is sliding downhill rapidly. He has no energy and shows no initiative to care for himself, occupy his time with anything other than lying on the couch in a dark room, or connect with people.

The CNR team took affirmative action yesterday; they suggested that Gilly be put on an anti-depressant. Dr. MacDonald asked to be paged during our conference with Dr. Kavan today so as to consult with him about medications and share his concerns about Gilly’s weight loss and apparent depression (which Gilly continues to flatly deny).

The question of swelling (adima / adema…spell check doesn’t like either version) on the brain was raised, and Dr. MacDonald wanted to go and check the MRI results. This was impossible, because it was done at the Neuro. Dr. Kavan’s habit of sending us from the Jewish to the Neuro will have to stop, because it renders the information inaccessible to the doctors who require the results.

Dr. MacDonald feels there may be swelling in the appetite center (of course he used fancier terms, but I wasn’t quick enough to catch them in the appropriate context. He mentioned endocronolgy and hypothylamic, if I’m not mistaken). He has a friend who works in Seattle who specializes in this, and will call for his help if the MRI results indicate this.

What he suggests is: a trial of Celexa (anti-depressant), going back on Decadron (steroid to reduce swelling), a trial of Megesterol (adrenal hormone) and a call to his friend if the appetite center is involved. He would also like to look into taking Gilly off the Dilantin (anti-seizure) since he has never had one to our knowledge. It was questionable at some point very early on, before radiation, but this was never confirmed.

Thi measured Gilly’s strength, but did not give us a report. He looked disturbed in a compassionate sort of way. He was more interested in Gilly’s weight loss, as were we all. Nelda sat with us and admitted that as a nutritionist, she has nothing further to suggest. I have taken all her advice, but greater measures are in order. She spent time with us anyway and tried to give us both a pep talk. She promised to contact the social worker (on another matter; mentioned below) to see if anything else could be done to help. We are more than blessed by being seen by the CNR team. There are incomparable when it comes to expertise, compassion and divergent thinking.

Today, Dr. Kavan was unable to confirm the MRI results (which is pretty much what I thought our visit and today’s decisions were hinging on), because he was at the wrong hospital. “Where did you have it done?” he asked. “The MNI, where you sent us,” I answered as I sensed a rush of anxiety take over my body. I was not surprised, since this is a recurring theme in our dealings with Dr. Kavan, but this did not make it an easier pill to swallow. I was devastated, because although I was cognitively aware of the likelihood this would happen, I was emotionally unprepared to face another sleepless night, waiting to know how that tumour is doing after all the discomfort Gilly has experienced as a result of the ‘treatment.’

He assured us, however, that it is highly unlikely that the tumour has changed. He knows the ‘disease’ (as he bluntly terms it) well, and does not expect change. What he is most interested in is the resultant swelling. He had reviewed Dr. MacDonald’s notes before seeing us (we hardly waited for him at all today, actually) and was quite concerned with Gilly’s overall downhill state of health (weight loss and depression).

Here’s what he decided to do: Take Gilly off of Temodal for one month, put him on the anti-depressant and the steroid and see if this helps. He explained that there is a condition known as somnolence syndrome (again, I’m not sure of the exact spelling or if I’m using the term in exactly the correct context). It is a result of radiation, and some people do suffer from it. It involves swelling and would tend to cause excessive sleepiness.

He will look at the MRI results tomorrow. If he can confirm what he suspects; that there is no progression in terms of tumour growth, and if there is indeed evidence of swelling, he will take him off Dilantin as well. I will have t ask again to fully understand the connection, but the Dilantin may also be playing havoc with Gilly’s state of well being, so if he doesn’t appear to need it, he’s better off not taking it. If you’re an avid blog reader, you may remember that his senitoine level was measured two weeks ago and it was at 15, so he moved from 3 times a day to 4, and this may be adding to Gilly’s discomfort.

I have to call Dr. Kavan tomorrow afternoon to find out the results. Now that I’m looking at my notes, I realize I will need to contact Dr. MacDonald as well to see if Gilly should begin the hormone Magesterol (or Majesterol???).

So back to social worker issues. As I mentioned last week, getting Gilly to eat lunch and take his medication in a timely fashion was not working. This week, we were scheduled to meet the home care worker (I try not to use real names when I have something negative to say, except for big shot doctors); we’ll call her Jennifer. I arranged for my mom to be here at 11:20 to show her around the kitchen and introduce her to Gilly. I felt the need for a familiar person to be here to assess the situation and connect the care giver to receiver in a humane way. Guess what? She didn’t show up. She forgot!!!! I found this out on my way home to pick Gilly u for the CNR appointment, which was why Nelda thought it might be a good idea to call the social worker at the Jewish to see what she could do. She met us today while we were with Dr. Kavan, but she had no viable suggestions to offer in terms of how to get the system working for us. She was not at all positive about the feasibility of the CSSS getting a reliable system in place and so offered me a number I could call to hire someone. I am a member of a community of people who have many such numbers to offer me. If I need to hire someone, I will do so. For now, I am trying to tap the available community resources.

Jennifer did leave a message on my cell phone explaining that she simply forgot to show, and then called me last evening to apologize profusely yet again. She sounds like a lovely person, and brad did highly recommend her, so I agreed to give her one more chance. She will come on Monday and Yaron will show her the ropes. We’ll play it by ear. I assured her that I understand human error, but the whole point of having someone come over here at noon is to remind Gilly to take his meds and to eat. The whole incident rubs me the wrong way, much like listening to someone singing my favourite song out of tune. She did not make excuses, yet mentioned that she was out of sync due to the holiday on Monday. I know what she means. I dragged my class into the wrong room on Tuesday morning because I forgot what day it was. They looked at me quizzically, but followed like sheep. When I realized my error they laughed in a good natured way (thankfully I teach an amazing group of students this semester, because that won’t be my last mistake, I’m sure, and it wasn’t even my first. It’s only week 2).

Brad called this afternoon to assure me that he will be on top of her on Monday, and that it is very unusual for her to mess up this way. He considers her very reliable, which was why he chose her for the job. He appealed to me to give her another chance, and I hesitantly agreed to do so. I told him how scared I am to have something like this happen again, especially when no one else is around to pick up the pieces the way my mom did. He understood and we left it at that.

I managed to squeeze in an afternoon of fieldwork supervision, and lost the fight against traffic on my way home. We’re off to grab some Chinese food before dropping Yaron off for hockey (yes, so the season begins). Tamara and Max will join us. Bon Appetite, Gilly! I look forward to some dinnertime conversation without having to pull teeth.

In sickness and in health

Today was a better day, but still worrisome to some extent. Breakfast was a hit; he ate twice his usual consumption. The extra calories helped set him off on the right foot for the special occasion we’ve been thinking about and planning (hoping) to attend.

Gilly arrived at the cousin’s club in fine form. I encouraged him to wear a button down shirt and a sweater (his original style of dress) and he took my advice. He looked rather sharp (dapper, relatively speaking). It was a nice change from the usual bulky sweatshirt he’s become attached to (a gift from his son). He worked the room, greeting people, which showed social initiative on his part, and is very much in keeping with his original style of communication. I was bursting with happiness as I watched him in action. He smiled and joked around a bit. I observed him approach one of his cousins by reaching out to shake his hand; “Do I know you from somewhere?” he asked in jest.

I feel I can safely say that everyone there was pleased he made the effort to show up and relieved to see him up and about; I noticed a few close relatives holding back tears. I can understand where they are coming from, because watching him face the monumental challenges he does each day plays havoc with my heart strings. This morning he was in better shape than he’s been for some time now. I suppose this is the true meaning of rising to the occasion. Yaron accompanied us, which made our day that much sweeter; we as parents greatly appreciated the gesture. Somehow, the kind of ‘club’ he most enjoys is not the ‘cousins’ variety, but he made the effort anyhow.

Howard, one of Gilly’s cousins, took me aside and shared how inspired he is by the relationship I have with Gilly. Somehow, in conversation, he quoted a portion of the wedding vow ‘for better or for worse.’ I often find myself reflecting on the phrase ‘in sickness and in health.’ I feel somehow wiser as a result of Gilly’s affair with the medical system; I fully appreciate the importance of having couples agree to love and honor one another in sickness and in health. I always believed, but never fully realized the significance of these words until last February. We enjoyed 23 years of good health, so the clause never required activation until now. Luckily, it hadn’t expired.

Gilly had the jitters again today, which literally propelled him to circulate around the cousins club gathering. His unsettled physical state continued throughout most of the day. He became impatient with the situation (which is a totally reasonable reaction). I would do anything to help him, but nothing seems to work. I am tempted to have him stop the new medication today, in case his behaviour is being caused by it, but I know it is best to find out from the doctor if a) his behaviour is medication induced and b) if so, how to safely taper him off of it. Long weekends have their pros and cons. I could call the emergency medical help line, but it doesn’t seem like an emergency, and I feel the doctor has a better idea of the global situation.

I spent some time this afternoon organizing my teaching materials for the upcoming week. I have to remain ahead of the game, because another week of appointments lies ahead. I must learn to readjust my way of doing things. Rather than planning out my teaching preparation tasks by scheduling them in logistically throughout the week, I am now forced to plan for the unexpected. This will take some getting used to, and it is sure to provide bonus time for weeks where the unexpected never occurs. I’m hoping for, but not banking on weeks like that!

I will post again at week’s end (Thursday or Friday evening), so as to allow myself to remain afloat, time wise. Have a great week, y’all.

Temporarily out of order?

I woke Gilly at 9:00 a.m. to take his medication. I try to keep the weekday routine going during the weekend. He couldn’t go back to sleep, and so was ready and waiting when his cousin Barb from Toronto arrived for a visit. He cherished the time they spent together. He smiled more in that one hour than he has for the past week. He was honest when he had had enough, and promptly excused himself.

Gilly was so shaky by lunch time that I actually fed him part of his lunch. I made the offer with trepidation, and was devastated when he agreed. He managed on his own for the rest of the day in terms of eating (although he ate very little), so it may have been a temporary lapse in functioning. I called the pharmacy yesterday to gather more information on the combination of meds he is taking, and the druggist explained that it takes time for someone in Gilly’s condition to adjust to new medication. He started a new type about a week ago, around the same time as his Dilantin was increased. These two measures at once can affect him for awhile. It’s frightening, even downright shocking to think that he may have reached the stage where he needs help to eat. He attempted to finish lunch on his own, but could only do so from a standing position.

He is certainly out of sorts these days. It’s a good thing that we are scheduled to see the CNR team on Wednesday and the oncologist on Thursday. Perhaps we can get down to the bottom of the problem. I wonder if he ought to be taken off the new medication since it's causing problems for him. It is supposed to enhance appetite, but nothing all that miraculous has occurred. This morning he admitted to hunger as I was preparing his toast, so perhaps the desired effect is kicking in slowly. The side effects may outweigh the positive results in the long run. If so, we’ll chuck them out the window.

I managed to get a walk in with Sharon and Rosanne this afternoon, and I went to the movies with Susie, Joey and Noam this evening. Yaron did some daddy patrol, which allowed me to get a much needed break. I continued clearing the yard throughout the late afternoon in anticipation of the fence installation for the remainder of the day. Between walks, visits and the movies, I managed to fill only three yard bags. The jungle is beginning to look rather tame these days, I must say.

I sincerely hope that Gilly will feel up to attending the cousins’ club tomorrow afternoon, if even for a short guest appearance. He gets out so rarely nowadays outside of medical appointments. The change of venue may prove to do him some good; it’s worth a try.

Happpy Birthday, sweet girl

It’s been a long and grueling week. It may take some time before I am able to post updates on the blog during the week again. Everywhere I turn, there is something important that needs attending to, and I am the coordinator of pretty much all that must be done. Even if ask for help, I’m still ultimately responsible for the task, so it’s often easier to just do it myself. That can be a dangerous way to think. I'm trying to work against it, but some matters are just too important to leave to others.

I’m training Yaron to take over several household chores. Bit by bit, he’s learning the ropes, but is not yet taking initiative. I trust this too shall develop over time. Unquestionably, he should be expected to pull his weight at his age, but the reason he is now forced to pitch in more often burdens my heart. When I was 18, my life was carefree; my children have had to grow up all too soon. I’ll admit, many children younger than mine have had to face even greater adversity. This reality doesn’t lessen or belittle their pain, nor mine as I witness what they are going through. It is a heart wrenching experience.

Brad from the CSSS called me at 8:45 on Monday morning, as I was walking into Vanier for day 1 with students. He told me that the committee he presented our case to suggested that I call Gilly to remind him to take his pills and eat lunch. I explained that this would not be possible on a regular basis, because I would have to postpone seminars, and so on, but I admitted that for this week I have resorted to this tactic. I appealed to him to try to secure some sort of support, so as to alleviate my high degree of anxiety and allow me to focus on my work. I do have to keep my job, after all.

I called home at 10:30 that morning to remind him that in an hour he’d need to get the lunch out I’d made and warm it, since I was heading into a series of meetings. I called home at 4:00 after I finished only to discover that he had just awakened from a nap and was about to warm his lunch and take his noon time pills! On the brink of hysteria, I dashed home. We were up until after one A.M. as a result, so as to spread out the remainder of medication he had to take.

On Tuesday I had someone at home with him, so all went smoothly. Manuela comes to clean on that day (usually once every two weeks, but now I’ve asked her to come every Tuesday since this is my longest day). I gave her detailed instructions to follow so as to keep Gilly on schedule, and the day proceeded like clockwork.

On Wednesday I called home at the exact moment he needed to eat and take medication. Unfortunately, he was unable to find the healthy, balanced meal Tamara had lovingly placed on a plate the night before due to his poor vision. I sped home in order to give him his lunch before his 3:00 MRI appointment.

The plan to just use phone call reminders is certainly not the answer. Brad called back on Wednesday to let me know that he persisted, and next Wednesday Josephina will come in and attend to his lunch. For starters, she’ll come twice a week, and if necessary, she will come more often. Thank goodness! My stress level ran extremely high this week; I was unable to sleep, I felt my heart pounding and I had trouble focusing on my work.

All this was happening during the busiest week of the semester for me as fieldwork coordinator. I find the term ‘coordinator’ ridiculously ironic at this stage of the game. How many things can one person coordinate? I have too many jobs, most of which do not draw a salary. Where does it end? I will have to take stock of the pros and cons of my position at work; I have more flexibility as to where I do my work during the ‘release time’ I am given to coordinate the fieldwork program, but I have more than 60 students, about 20 day care directors and 11 fieldwork supervisors to organize, and the pieces do not fit neatly. Many last minute changes have to be made, and it is very time consuming. I have to deal with many people, and do so in a diplomatic, pleasant manner. This does not include the two courses I teach and all those students I am responsible for…not to mention the handful of students I supervise myself. It is beyond me how I arrived at the end of the week with my head on straight.

When I arrive home after stressful hours in the work situation I am slapped in the face with my personal reality. This week, Gilly was even more needy than usual. He repeatedly told me that he did not ‘feel right.’ I really didn’t know where to turn. I did not see symptoms that indicated the need to go to the hospital. I had to tackle the dish washer, dig a hole through the pile of laundry, shop, prepare doses of medication (now I have to split pills as well), shop for groceries and other sundry items, do the banking, contact various health professionals for one reason or another, keep track of and manage medical appointments…are you tired yet?...complete my unfinished work of the day as coordinator and plan my lessons for teaching. I felt disgustingly wicked attending to these necessary tasks while Gilly was feeling rotten and perhaps wanted me by his side. I’ve said it before and I’ll say it again; I need a clone.

Today I had time to organize the house since fieldwork supervision (slated for Thursdays and / or Fridays) doesn’t begin until next week. I prepared dinner for my family in honour of Tamara’s birthday (which is actually tomorrow). I try never to miss an opportunity to celebrate happy occasions, and tonight was no different. Gilly remained upstairs all evening. In fact, he continues to snooze on the living room couch at this very moment.

Over all, his physical state is not great. He has become restless lately. I’m not sure if it is boredom, depression or his body adjusting to the new medication he is taking. It is probably a combination of all three. He’s very thin, and smiles less often. He has an awful lot of trouble expressing himself; he seems to have given up on talking most of the time. Emotionally, he’s at a low point. He prefers to be alone, lies on the couch rather than sits, and rarely bothers to turn on the T.V. anymore. He has very little energy, and his vision is very poor, which disturbs him to no end.

We are in town on this final long weekend of the summer because there is a cousins club gathering here in Montreal this weekend (Gilly’s mother’s family on her mother’s side; a yearly event). Gilly is still vacillating as to whether he’ll feel strong enough to attend, but he’s leaning towards going. It’s motivating to have special occasions to look forward to. I plan to take some time over the next few days for myself, to walk with friends, and just relax with Gilly. I have to rejuvenate myself for the week ahead. Luckily, it will be a short one, since Monday is a holiday. The fieldwork frenzy is pretty much done, so with any luck (and a lot of thinking ahead) things are sure to run more smoothly. Transitions are tough all around, but we all still have each other, and love is in the air.