A long winded tale of woe, sprinkled with hope

Just for the record, Maria blew it. She still has not called, and so although I felt she deserved a second chance, I was way too generous. The response from professionals at the Jewish is much more reliable and swifter. I’m glad we made the choice to stick with the oncology team and the services of Hope and Cope.

The night was nightmarish. Gilly refused to come upstairs, so I set my ears on alert and went to my bed to have a nap. He got up and fell on the coffee table, smashing one of the 4 glass panels to smithereens. I ran down when I heard the crash and found him stuck with his rear end in the hole where the panel once covered and glass all over the place. He himself was unharmed, but I let out a bloodcurdling scream upon entering the scene, which shook us both up. Yaron was at hockey (this was about 10:00 P.M.) at the time. I cleaned up the mess and begged him to come upstairs to bed. He laughed at me (as he has always done in the face of any sort of danger) and assured me he would sleep in his chair. I put a huge gragger beside him that makes a horrendous ear shattering noise (Gilly bought it years back to use as a cheering device during Yaron’s hockey game). I begged him to shake it when he wishes to come up and I will come downstairs to help.

I must have fallen asleep again, because the next thing I remember seeing was Gilly’s grin in the doorway to our bedroom. “How did you get upstairs,” I asked incredulously. “I walked,” he replied nonchalantly. I couldn’t believe it. I decided then and there that no matter how my solution plays havoc with his dignity, I will bar his access to the stairs somehow; I do have a Fisher price gate!

During the night I heard him stir so I asked if he wanted to use the bathroom. He muttered affirmatively, so I went around to his side, got him his cane and walked him slowly to the bathroom. I was standing right next to him when his right leg gave up on supporting his weight (which isn’t much, let me assure you) and he fell right before my eyes. I tried lifting him, but he angrily refused my assistance. I am stronger than him for the first time in our lives together so I won the battle and set him to right. I was shaken to the nth degree, and wondered when I would get any real sleep ever again.

Yesterday’s visit to the Jewish was long, arduous and not at all encouraging. Before I go into my usual lengthy dissertation on the events that occurred, I’d like to assure you all that today seems much more promising.

Gilly’s usual session with Thi consisted mainly of training hi to use a walker. Motor functioning had deteriorated radically since the last appointment when Thi had gently suggested he begin to use a cane. I met Elizabeth in the physiotherapy department waiting dutifully at the entrance. My mother had dropped the two of them off and I was scheduled to meet them upstairs at 2:30. I was a few minutes early because I found a parking space (albeit quite a distance from the hospital, but it was meter free; I take these opportunities when I find them, because parking at the hospital is costly and we are there on a regular basis. I wondered why Elizabeth was not inside watching the session where I expected her to be, but decided to address all the ‘Elizabeth’ issues at once, and this was not the time or place.

I discovered that the doctor could write a prescription for a walker, and we could pick one up at Slawners. I knew in the back of my mind that Sheryl had one to lend, so I tucked the information away just in case and made a mental note to call Sheryl on the way home and pick it up.

Gilly had to use the washroom before heading upstairs for the pre-kavan blood test. This presented a terrifying scenario I had not encountered before; how would I prevent his falling if I could not enter the room? I asked Elizabeth what she thought we ought to do, but she was as frightened as I. She had spent the morning getting him out of bed, showered and shaved and ready for pick up; she was frazzled and I do not blame her for that. I expected her to be used to this sort of work, but perhaps Gilly’s condition is worse than anything she’s ever had to deal with. Or perhaps the tasks are just too great to expect anyone to comfortably manage. He is totally off balance, and so the fear of having him fall is a natural reaction. He ended up solving the problem for us by scoffing at our concerns and going in there on his own and returning unscathed. Phew!

We left Elizabeth at the elevators visibly shaken, bidding her adieu until next week. I promised to solve some of the existing dilemmas revolving around ensuring his safety by the time we see her next, assuring her that the OT is coming to the house tomorrow to help us find some solutions.

The CNR team was to see Gilly at 3:00 and Dr. Kavan at 4:00, but they were running late. I had serious reservations about disappearing into an examining room with Nelda because I was afraid we’d miss the call for Dr. Kavan. Cynthia, the CNR coordinator understood my concern and gave strict instructions with the volunteer to alert us as soon as Dr. Kavan is ready. Gilly was weighed, and I was surprised to discover that he had lost weight. Nelda asked if he’s had a swallowing assessment and I told that the OT had done one. She said she’d recommend referring him to speech pathology to have one done as soon as possible. He has been eating well, but I suppose the condition is sapping more out of him inmany ways and she wants to determine exactly what the situation is. We met the new dietician who would handle Nelda’s Wednesday / Thursday caseload from now on (she has too many patients to follow single handedly) and then were ushered to a room to await the big man on campus.

Dr. Kavan entered the scene at least an hour after the actual appointment time and greeted us warmly. He asked how everything was going, and Gilly said, “Great” in a meek voice. He looked into my eyes with genuine concern written across his face, because just looking at the way Gilly was sitting in the chair told him that things were not great at all. I brought him up to date, and he quickly came to the conclusion that his rapid deterioration may be attributed to a long-term effect of radiation. There may be significant swelling on his brain (in his brain, around it??? I’m not quite sure how he would accurately put it and I did not ask this question at the time).

This is where the story becomes grim; he suggested a 5 day trial on a massive dose of Decadron in the hopes that it would reduce the swelling. If so, we should see a gradual change in motor and cognitive functioning. If not, he highly recommends hospitalizing Gilly. He explained that if it is not swelling, we should see a rapid decline and the symptoms would be impossible to manage in the home situation. He wants us to be seen by a symptom management team upon entering the hospital. Even if there is an improvement, he advised that the team should see him as an outpatient as soon as possible. He threw another term my way (I believe Gilly had fallen asleep in his chair by this time) which puzzled me; PCU. My stomach fell to the floor when he translated; palliative care unit. I was not prepared to hear this news, but I had no choice. I used all my strength to hold back; my instinct was to wail uncontrollably, but this is not something I can do in front of others, especially a doctor.

He wrote out prescription fro Decadron and two referrals; Dr. Lapointe of the symptom management team (I prefer this terminology) and speech pathology, to conduct a swallowing test (I mentioned Nelda’s suggestion and he agreed it is important to take care of). Robert had conducted a rudimentary form of a swallowing, but a more conclusive test is warranted at this point, it seems. Swallowing incorrectly and having food go down the wrong tubes can lead to grave circumstances, such as pulmonary infection. Robert had explained this to me during the assessment and provided tips to prevent this occurrence, but Gilly’s functioning was significantly better at that point.

Dr. Kavan was visibly astonished when Gilly rose to leave; he was so weak and unbalanced that he could not understand how I’d get him home in one piece. “Where’s your car parked?” he asked with trepidation. I admitted that I have a long way to go to retrieve it, but I assured him that I am quite capable of protecting my most precious package; we will take it slowly.

Of course Tamara and Yaron are equally precious; this goes without saying, but I have to say it anyway. I mustn’t forget to protect them too. Last time Gilly was hospitalized (the only time actually in all the years I’ve known him) I neglected to even consider ensuring that my son was well fed. Luckily, friends and family stepped in and remembered for me. Sure he’s old enough to care for himself this way, but he was in as much pain as I and needed some TLC; Tamara, who lives on her own, is much more accustomed to fending for herself.

We managed to get to the Legare entrance where I set him on the bench to wait. The skies had opened up and the rain was coming down with a vengeance. I was physically and mentally unprepared for the change of weather. No more worrying about free parking, I decided. The time has come to get the handicap sticker that Robert had suggested earlier. I balked at the idea, explaining how it motivates Gilly to walk a bit, but this is no longer a safe plan so I made yet another mental note to apply for the sticker tomorrow.

The evening ran smoothly but heavy emotions dragged us all to the ground. Tamara and Max arrived, walker from Sheryl in hand, to allow me the time away from what was becoming a progressively, rapidly grimmer scene on the home front. Trudy and I went to Bistro for dinner and happened upon an evening filled with live music from our early days. Two acoustic guitarists acted as the pleasurable backdrop I needed to spill out my heart and laugh at good memories of years gone by. Trudy and I share an awful lot of history. We’ve been friends since 4th grade, and she is responsible for my marriage; she gave Gilly my phone number and advised him not to call me on a Saturday night, which he defiantly and promptly did. The rest is history.

Meanwhile, back at the ranch Tamara and Max removed the coffee table to keep Gilly out of harm’s way. Gilly, protesting all the while tried out his new walker for size. I returned home to a quiet, relaxed yet melancholy scene. Tamara’s eyes were red rimmed; “He called me Maria,” she revealed brokenheartedly. I turned to him and asked, “What’s her name?” “Tamara,” he replied with a thick, Hebrew accent. “Well, he only knows my name in Hebrew,” she complained with a hint of humour in her sad Betty Davis eyes.

He refused to come upstairs to sleep; my head was pounding. Getting away for a few hours works wonders, yet reality continually slaps me in the face as soon as I return to our life as we now know it. Yaron arrived home from transporting his sister homewards, so I asked him to go downstairs and try to convince his dad to come up. He was equally unsuccessful, but relieved me by remaining downstairs until such time as Gilly would agree. I closed my door and took advantage of a few hours of sleep. Gilly did arrive later on, escorted by Yaron and I immediately assumed “on duty” mode.

The night passed without incident. The walker helped ensure his safety to and from the bathroom, and so I had a chance to nap more restfully.

I spent quite some time pulling him out of bed this morning to greet the OT from the CSSS who came to do a home assessment. I realize now that I gave that first OT (who cam last April, I think it was) a bad rap. She was for seeing the future, but I perhaps unfairly shot the messenger. Today’s OT was gentle and empathetic. She perused our surrounding and determined that very little else is needed at the moment. She will lend us equipment to round out what we already have, and she determined that he is still capable of moving down those treacherous stairs to the basement as long as he is well attended. I was relieved. She made me feel as if Gilly being made comfortable and safe at home is doable, and for that I am thankful; she offered me a bright light of hope for a future including my sweetheart here at home with us. She will return in one week’s time with the goods and a filled out application for a handicap sticker. Deep sigh….

Gilly slept on the couch in the living room for most of the day in between meals next to that godforsaken coffee table that we moved to the location he rarely spends any time in. Go know! He’s had two doses of the new dosage of steroids; we have yet to see if there is any change in the upwards direction. Certainly, there is no further notable deterioration as of today, although he’s very tired. This is to be expected, because I had to awaken him earlier than usual.

I received a call from speech pathology at the Jewish asking me what Dr. Kavan means by an assessment, because he gave no specific instructions. I explained that he wants a swallowing assessment, and she then understood. I threw in the fact that he also may have expressive aphasia, but she explained that this is not addressed on an outpatient basis, so they will only do the swallowing assessment, and she will call next week with an appointment. I asked her if Lethbridge deals with expressive aphasia, but she was not sure.

Lethbridge called moments later and set the appointment for Gilly’s assessment for next Thursday morning. I will need to change my field work day to Friday. Luckily I have the freedom to do so, meaning I needn’t miss a day of work.

The CNR coordinator called to say that Gilly’s next appointment was made to coincide with Dr. Kavan’s next visit on the 23rd, so as to avoid us having to come in too often. I expressed my appreciation for her consideration to our situation. She was clearly saddened by what she witnessed yesterday and wanted to do all she could to help.

I have been working periodically on this blog entry all day, and so it’s time to sign off. You’re all up to date and then some. I had to put down all the facts so as to run through the recent disturbing events again, this time as out put. The input forced me to have that need. We’re off to the eye doctor shortly and then a small contingent of family members are coming for dinner; bringing it, actually. I hope our trip runs smoothly and that I can park close by! Gotta get that sticker yesterday.