Update #22, October 27, 2012

Good evening.

 

We just got home from Woodstock.  A very nice drive home--not like the rainy, hazy, foggy drive out this morning!

 

Arrived at Sakura House around noon.  Alice was sleeping but awoke as we came in.  Daughter-in-law Elaine and Doug were there;  Trish Weir and her mom, Mary McArthur were just leaving.  We got busy preparing lunch--warmed up some of Alice's own recipe:  Hearty Casserole (also known as 'slop', 'skub-gub' and goulash in various households!).  She and Doug split it but neither had much appetite--there are still leftovers in the fridge.  We plied both of them with water and Doug with Gatorade, too, reminding each of them to drink through out the day.  Strangely, each time the chocolates and fudge came out--neither one turned them down!  Hmmm...

 

Alice slept most of the day--she seems to be napping after every meal.  Eating takes a lot of concentration.  She truly doesn't move much anymore.-- didn't even try to feed herself today.  She lay pretty still, with her hands under the covers.  It seems that she is getting smaller.  Physically, yes, a little, but I mean more in terms of her personality.  Her eyes are still bright, but she rarely speaks.  She may nod or give yes or no answers, but choices are hard for her and open-ended questions are almost impossible.  It's hard to get a feeling for what she would like for lunch.  Sometimes her eyes will flicker and I can get some information from that, but often, her face is placid and blank.  Then, my face is clueless!  I can guess some things, based on her likes and dislikes and fortunately, she's never been a complainer.

 

She seemed to spend a lot of time watching out the window and maybe keeping an eye on the bird feeder.  A sparrow found it yesterday and s/he was back today.  In fact, this little bird spent a good part of the afternoon tucked into that feeder.   Sometimes eating, but sometimes I think s/he was napping and guarding her/his new turf!  And staying out of the rain, of course.

 

She has a gorgeous new fleece blanket, in soft rainbow colours, made by her sister Joyce.  It's thick and warm and each person who came into the room couldn't help but stroke the cozy fabric.  It was quite nap-worthy and Alice tested it out several times today.  I'm glad to report that it performed very well!

 

We brought in some cds that we thought she might like.  Played one with bird sounds and soft classical music.  Look through the pile next time you're in and put one on, if you feel like it.  They are hiding under the bag of chocolates.

 

I'm going to try going up for an afternoon, every second or third day and driving home the same day.  This way, I can sleep in my own bed every night.  This gives me a better chance of having consistent sleep.  We'll see how this goes for the next week or so.

 

Okay--I'm off to put laundry away.  Curl up with a good book.  Batten down the hatches.  Drink your water!!!

 

love, Robin.

Update #21, October 25, 2012

Hello all!

 

I've received a few notes wondering how things are going and when was the next update coming?  I think the sub-text there was, "Did I get dropped from the list??"  Relax--no one got left out (that I know of--email me if you don't get this update!).  I was having a sad, cranky week and decided not to inflict myself on my family.  Jo?  Too bad for her, she's stuck with me!

 

Jo and I went to Woodstock yesterday, in the fog.  Alice had lots of visitors--brother-in-law Bob was there with Doug and Trish Weir came in later.  Alice was quiet, but bright-eyed and listening. She always smiles broadly when Joanne comes in--Wednesday was no exception. 

 

I did a presentation to Embro's UCW that night, on working with developmentally handicapped people.  My thesis was that many people think it's a sad job, so Jo and I were brainstorming funny anecdotes from group home life.  There are truly many more amusing stories than sad ones, so it seemed like a good place to start (of course, there's quite a pile of frustrating stories, but we won't go there...)  So we regaled Alice and Trish with tales of 'our guys'--Bill wearing his hard hat to bowling because the weather person had called for hail!  Susan eating breakfast at 9:30 pm because she didn't have time in the morning!  Margaret insisting that she needed small bills at the bank--even when withdrawing $300 for clothing shopping (this was back in the day when we had one and two dollar bills)!  My little talk went well--the ladies of Embro were very well-behaved and asked very thoughtful questions about funding and daytime activities and staffing structure.  And they gave me shortbread and hot chocolate!  The gift bag was quite a surprise and full of my favourite things. 

 

Alice has settled in nicely to Sakura House, I think.  It has taken us a while to understand their routine.  It is so relaxed that there are not 'regular' meal-times.  If there are visitors, it is expected that they will wander down to the kitchen to request a meal on behalf of the resident.  Most of the meals are frozen, from Meals on Wheels, so prep time is not an obstacle.  There are about 10 different entrees, and almost that many soups.  Fresh baked cookies are always available, as are coffee and tea.  There is quite a variety of sandwiches and many options for breakfast.  Family can buy a sandwich for $3 and a hot dinner for $5.25.  Alice can have anything--she has only to ask.  This was the piece that we were missing--the resident or the visitors have to initiate meal-times.  Quite different from the regimented schedule of the hospital.  If no one is visiting, a staff member or volunteer will go down and ask if she's hungry.  She never admits to hunger, but she can always eat!  I think because she has so many visitors, this routine did not get established right away.  Hopefully we're on the right track now.

 

Today was beautiful, so Joyce and I took Alice outside for a rest in the sun.  We wheeled her out in her bed and found a place on the edge of the patio where the sun could shine on her face, but not in her eyes.  She turned her face into the warm light and napped.  I almost expected to hear her purring, like a cat!  The breeze was warm and the view was of fields and gardens.  What could be better?  We sat outside for over an hour, in a chickadee flight path.  We seemed to be parked between a feeder and some other important chickadee location because they would buzz and swoop between our heads!  My sister had been visiting Alice this past weekend and brought her a bird feeder for her window.  The chickadees haven't found it yet, but it's close to their flight path, so I'm sure they'll discover it soon.  Sitting outside was a balm to all of us.  Another family saw us out there and came out to enjoy the weather, too.  It was nice.  It felt kind of normal.

 

Some of the staff and volunteers discovered something today, about my mom and her sisters.  Of course, it's nothing new for them when people walk up and say, "Are you really triplets?"  They even had a request for a photograph!  No one asked for autographs, but I'm sure that's coming!

 

Doug has not been feeling well, lately.  His blood pressure is fearfully low and he fainted this morning, while opening the front door to his brother.  Thank goodness Jack was there!  Doug came around and refused to go the hospital (!).  There is water and gatorade in Alice's fridge, along with some salty meals in the freezer.  We can all help him stay a little healthier.  If I am feeling cranky and overwhelmed with the situation, I cannot imagine the depth of Doug's feelings.  I think eating regularly and staying hydrated are just not making his priority list, right now.  We told Alice that he wasn't feeling well and was going to nap for a couple of days.  Didn't seem any point in burdening her with the details.

 

Okay.  I must be off.  Cross your fingers for more lovely weather.  Take care of yourselves.  Keep visiting.

 

love, Robin.

Update #20, October 18, 2012

Good afternoon, everyone.

 

Alice moved to Sakura House today.  She is in room #1, which you might think would be near the front door--not so.  It's the furthest down the hall.  She has a lovely room with lots of natural light and a quilt with hydrangeas on it.

 

When we arrived at 1 pm or so, her name had already been put on the name-plate outside her door.  What a nice touch to make us feel that it was her space, not just a bed that she is occupying.  The nurses and volunteers were very warm and welcoming and we met more people than we could keep track of.  There seems to be some levity with the official name tags:  I saw Minnie Pearl  and Dora the Explorer, complete with i.d. photos!  I'll keep you posted on any other 'sightings.'

 

Doug quickly claimed the beautiful lazy-boy chair with the stand-up function (You know what I mean:  It will help you to your feet, by rising up underneath you and lifting you to a standing position!)  I think they may have to frisk Doug on the way out, if he gets used to it.

 

I'm sure that Alice will be sleeping most of today--you will remember that ambulance rides are not her favourite thing--but I'm sure she'll be up for short visits tomorrow.  Remember to talk slowly with her and not to expect too much in the way of answers.  She may have them, if it's a good moment. 

 

She had a pretty challenging day yesterday--quite fatigued and was having trouble manoeuvring the fork and tea cup efficiently.  She was in better shape this morning and seemed quite pleased to be at Sakura House.  She watched us unpack her things and discuss placements for plants and flowers.  She smiled when I put Isabel's guardian angel picture up where she could see it.

 

Hope you're all staying dry and warm this afternoon. 

 

love, Robin.

Update #19, October 16, 2012

Hello all.

 

I was home today, instead of in Woodstock, as I thought I felt a migraine coming on.  Must have kept my head well under the covers as it didn't find me.  Small mercies...

 

Aunt Nancy let me know this evening that Alice has decided to move to Sakura House.  She'll be going by ambulance on Thursday in the late morning and whomever is around (Nan and I for sure) will move her walker, clothes, flowers, cards, etc.  Oh!  And the chocolates, too.  For sure, the chocolates need to get there safely.

 

Sakura House has no rules, beyond 'no loud partying at 3 am' as the volunteer who gave us the tour on Saturday told us.  Visitors are welcome any time at all, provided that the resident is agreeable to having company.  There are lots of rooms and corners to sit quietly in or to chat, if Alice needs a nap or a quiet moment.  It is a beautiful property.

 

Phone number there is 519 537 8515. 

 

Website:  http://von.ca/NationalDirectory/branch/pages.aspx?PageId=482&BranchId=35  The illustration of the house on the website is a view from the back yard.  Looks a little different from the front.

 

Address:  #715180 Oxford County Rd 4,  RR 5,  Woodstock ON  N4S 7V9 

 

Directions:  If in Woodstock, drive through town east on Dundas St to Bond's Corners (last corner before the 401).    Turn left onto County Road 4 and drive about 2 km north of Dundas St.  You'll see a long brown rail fence (in need of some paint) on the right and it will lead you to Sakura House's front gate.

Devonshire will also get you to County Road 4.  Turn left and look for Sakura House almost immediately, on the right.

 

I used Mapquest and GoogleMaps to try to locate Sakura House.  No luck.  Mapquest had no idea and Google tried to offer directions to the VON office on Ingersoll Ave, while taking you to Ingersoll Road, while claiming that you would end up on County Road 4!  Ah, technology.  Still hasn't figured out small towns and rural addresses.  Just a warning...

 

I find I am relieved that Alice has decided to move.  Not because her care is not excellent in the hospital--it absolutely is.  But because this signifies to me that she is accepting her death as inevitable and close.  For someone as stoic as Alice, I sometimes wonder if the pivot point between 'fighting the disease' and 'accepting the situation' is a painful challenge to identity and purpose.  I'm glad that it does not seem that way for her.  If she can accept what is happening, then so can we.  To palliate means 'to ease'.  Did you know that?  Makes a lot of sense, eh?  If moving to Sakura House eases the way for her, then it will also ease the way for us.

 

We'll get through this.  Stay close.

 

love, Robin.

Update #18, October 14, 2012

Hello.

Well, today we had a field trip that never was.

Our plan was to take Alice to see Sakura House this morning.  It has been 3 years since their grand opening and the open house that she and Doug attended.  We booked a wheelchair accessible cab and made sure that the nurses were aware of the plans and thought we had it all covered.  Alice was up and ready and game for the adventure.  We were on time.  What could go wrong?

We waited about 20 minutes for the accessible taxi--no worries, it was a nice moment in the day, weather-wise.  Alice had her winter coat on, but not buttoned, to keep out the dampness.  She commented on the trees in front of Woodstock Hospital, noting that they had grown well since being planted last year (Woodstock Hospital is also a new facility--its grand opening was last November!). 

Cab comes and the lovely driver wheels Alice into the back of the van...and stops.  Brings her out again and notes that the i.v. pole on the back of the wheelchair is too tall for his mini-van.  Okay.  Options:  Find another wheelchair without the pole or take this one off.  A nurse and a security guard come out to assist and inform us that all the hospital wheelchairs have this pole.  Okay.  The cab driver pulls out a pair of vise-grips (aren't they the handiest things?) and tries to loosen the bolt that seems to be holding the top half of the pole on.  No luck. It spins but does not loosen.  The security guard notes that the poles used to come off, but they would get misplaced and so they were all permanently affixed to the chairs.  Hmmm...We examine the chair from top to bottom trying to imagine where else we could slide/slip/stretch something to make this work.  Nope.  That wheelchair was extremely well assembled.  No obvious chinks in construction.

So, then, my wonderful, strong Joanne offered to lift Alice into the mini-van seat.  I wondered if this would tire Alice out too much to really examine Sakura House when we got there, but Alice was game for the lift, so we tried it.  Joanne lifted her carefully and gently and got her on her feet, but couldn't hike her up high enough to get onto the van seat.  Alice had had enough by this point so we admitted defeat and went back inside.  Alice had a nap immediately and rested up for lunch.

As we were helping her into bed, I said to her that I was sorry that our plans didn't work.  She asked, "What didn't work?"  I reminded her that we had been headed for Sakura House for a tour.  She nodded but I'm not really sure that she's holding information like that from minute to minute. 

While she was eating lunch. Marie Wood came by.  She's a long-time friend of Alice's from Kintore and she looks fantastic!  We chatted and caught up.  Alice was busy eating--she doesn't seem able to divide her attention now, but she responded to some jibes and teasing.  She didn't say much, but those 'looks' can communicate volumes.  For the first time ever--Jo was on the receiving end of one of Alice's exasperated looks!  And a second time, too.  I gotta say, they are not so bad when pointed at someone else! 

When Marie said good bye and that she would come by to visit again, Alice said, "at Sakura House."  I double checked this after Marie left:  "Do you want to go and live at Sakura House?"  She nodded and said something like, "soon." 

Sakura House is an incredible facility.  Here's the link to the website.  Or just google Sakura House Woodstock.  It's run by the VON, so the photos and info are on their site.  http://von.ca/NationalDirectory/branch/pages.aspx?PageId=482&BranchId=35  The hospital has a 'video tour' of Sakura House and we requested that it be offered to Alice tomorrow.

As I said above, however, I'm not sure how much information she's holding onto from day to day.  Tomorrow she may have different wishes.  But we'll see.  She definitely feels safe in the hospital and would not object to spending her last days there.  I don't know how long it would take to effect a transfer--not long, I think.

Going to Sakura House means agreeing to let death happen naturally.  They don't do CPR when someone's heart stops and 'heroic measures' will not be employed to extend a life that seems to be ending.  I'm not sure if Alice has signed those papers, but I know there have been several discussions with her.  They would also not be giving her blood transfusions, so she will continue to weaken.  Sakura House is about comfort, in as many forms as they can manage.

Don't forget to come and visit, wherever she is.  She enjoys seeing you and your stories make her feel like she's part of the world.  She is quieter now, and weaker, but still gets dressed everyday.  She has some fancy new pillow cases--quite unlike anything else she has owned and I didn't pick them out!  (Just want that out there...)  You'll have to go and see for yourself what her sister chose for her!  Best to call Woodstock Hospital to check and see if she is still there:  421-4211.  Don't forget to ask for Alice Weir-Hutchison.  I'll let you know if she moves to Sakura House.

I know it can be uncomfortable to see the changes in someone that used to be so busy and energetic.  Don't worry.  She doesn't expect much from us.  You can talk and tell stories or you can just sit quietly with her.  She may have her eyes open or not.  You could ask her for some chocolates--she hasn't said no to me, yet!  She doesn't look like she's paying attention, but she's taking it all in.

She seems contented.  It's an odd word to choose for someone so sick, but she does not display any anxiety and very little discomfort.  Since being at the farm for Thanksgiving dinner a week ago, she seems calmer.  I think that day allowed her something, some freedom to really see herself and her place in the world.  She has let go of something.  Not hope. I don't want you to think that she is depressed, because I don't think she is.  I believe that she still has hope--maybe it's just for different things, now.  She is still concerned about us--checking in that Joanne's back is okay before lifting her and when we are returning.  She is still looking  forward, I think.  We should all be so placid while doing so.

Thanks for reading.  Keep us in your thoughts.

love, Robin

Update #17, October 13, 2012

Hi all.

We had another family meeting today.  Dr. Fryer came in on Saturday morning to meet with Doug, Nancy and Joyce, and Joanne and I.  She reitereated and confirmed many of the things we discussed a week ago, Thursday.  The Herceptin (cream of the chemo crop) has been discontinued, as has the pamidronate (bone builder).  The continued use of these two drugs was contingent on improvement in Alice's functioning and condition.  In fact, we saw quite the opposite.  Her processing has continued to slow down and she had trouble keeping track of the lines of conversation today.  It was a little esoteric in nature, but also quite concrete at times.  Sometimes the shifts in focus seemed to leave Alice behind.

She was able to participate, though, and her answers were always on topic.  It took a long time for her to formulate them, however, and sometimes we could see the threads of her thoughts slipping away. 

We met at 10 am--she was already very tired.  Nancy, Joyce, Joanne and I excused ourselves after a few minutes and left Alice, Doug and Dr. Fryer alone to talk.  I think lessening the participants in the group was helpful.  While they were talking, Gerard, the visitation chaplain from Alice and Doug's church, stopped by.  Aunt Joyce called his visit 'divine intervention' and we couldn't disagree.  Both Alice and Doug are fond of Gerard and are very comforted by his visits.  He spent about an hour with them and conversation seemed to flow.

So, back to Dr. Fryer's comments.  She noted the discontinuation of the chemo (Alice did not receive her chemo yesterday) and the continued need for blood.  She repeated that Alice's need for blood would only grow greater and her body would be less and less able to effectively utilize the blood, over time.  She noted that, medically, there is little left to do beyond ensuring comfort.  Alice is more than welcome to stay in the hospital, but a move to Sakura House (hospice) is possible and appropriate at this time.  Alice indicated that she would like to see Sakura House again (she and Doug visited during their grand opening, three years ago) in order to make an informed decision.

This has been arranged for tomorrow morning.  A wheelchair accessible taxi will pick her up at 10 am and deliver her to Sakura House.  We'll have a quick tour and return to the hospital.

Nancy, Joyce, Doug and Joanne and I went there this afternoon, to satisfy our own curiousity and perhaps to ask questions that might be considered inelegant, with Alice present.  It is a beautiful and luxurious place.  It is flexible and accomodating and personalized.  Residents can request special meals and there is space for family members to cook for them.  Each room has a patio, a private bathroom, a wee fridge and microwave, a flat screen tv, a pull-out couch and a gorgeous recliner.  There are volunteers and staff that will assist with bathing, meals, or just be company, if one wants.  There is a massage room, a huge-screen tv in a sound-proof room, a jigsaw puzzle table, a library, extensive decks and gardens...Pets are welcome, as long as they've had their shots.  Even cows!

This is certainly a hard moment for us.  The realization that we are losing her has been dawning for several weeks, now.  It is getting more and more real and certainly touring a facililty devoted to end of life only brings our thoughts closer to this idea.  We are not sure how much Alice is understanding about all of this.  She seems to be keeping up, but her constant fatigue and somewhat vague answers tend to leave us with many questions about what she is thinking.

One thing that she has been clear on is that she is not in pain.  Of all the things that are emotionally painful and confusing, I am most grateful that she is not having to deal with the indignities of physical pain, too.  It is comforting to know that, at this time, pain management is not an issue.

I'll let you know how the tour goes and if she makes a decision, one way or the other.  As I understand it, there is no rush on this choice--Sakura House will be there if she wants to be there.

She is still enjoying visitors--keeping coming for short visits.  She is not talking much, these days--a sentence or response takes so much effort for her to put together.  I think she is happy to hear your stories and remembrances.  She definitely has chocolate to share--the good stuff, too (thank you Bev and Dan)!  I'm afraid her pink llama's wool blanket has gone awol.  We are trying to consider its disappearance charitably, as a laundry mishap.  It was not labelled with her name or room number, so if mistakenly put in the laundry, how could it be returned to her?  I hope whomever is cuddled up in it now is enjoying it as much as she did.

Keep us in your thoughts.  We appreciate all of your notes and messages and good vibes. 

love, Robin

Update #16, October 8, 2012

Good evening, all.

Hope you had a festive Thanksgiving and a lovely long weekend.  Is anyone else surprised at the vibrant colours in the trees, after the dry summer we had?

Well, Alice went home today.  She was pumped for it and excited to be going. Unfortunately, she had the time wrong.  She thought her chariot (Joyce and Clarence's chariot, to be precise) was arriving at 2 pm.  So she was lounging in her pajamas when they arrived around 11 am!.  She had a quick shower and a change of clothes and off she went.  Did very well with her new burgundy walker on the way down to the car. 

She quickly ran out of steam, however, and had to be carried into the house on a kitchen chair.  Then a brake on her walker jammed--the finest minds in the house couldn't fix it, so it's going into the shop tomorrow.  We slid her across the kitchen floor in the chair and set her at the head of the table.  She looked carefully around and said later that she had been noting all the things that needed doing.

Washroom visits proved to be quite the challenge--Alice's legs wouldn't hold her up and so four of us were jammed into that little space--Joanne would lift Alice in a 'bear hug' and then 'dance' her around in a tiny circle, while Joyce snatched the walker (Alice had been sitting on the seat of the walker and letting us wheel her around) out of the way.  I was there for...ahem...clothing adjustments and remote guidance ("one more inch...no...left, left...good!")  I'm sure Alice would not be thrilled to know that I am describing this to all of you!  Perhaps we'll keep this our little secret, okay?

She had turkey dinner with Doug, her sisters and their husbands and Joanne and I.  There were lots of stories, teasing and laughter around the table.  We had three kinds of pie;  pumpkin, apple (wow, Lisa!)  and peach.  We ate a little later than planned and forgot the stuffing in the oven.  In short, a normal holiday dinner for the Aldersons.

Alice napped in her own bed after dinner and had a cup of tea when she woke up.  We headed back to the hospital while we all had enough energy to manage the transfers and lifts that were necessary.  Fatigue really takes its toll on her coordination, She had a little better command of her feet after her nap, but still needed to be lifted in and out of the car.  She's not very big, but I couldn't have lifted her all those times.  As ever--thank goodness for Joanne!

She enjoyed herself at home and said that she had the best nap she'd had in a long time.  She was disappointed when it was time to return to Woodstock Hospital, but at the same time, I think she was relieved, too.  It was a day of trouble-shooting and haphazard choreography for her care-givers--I'm sure it can't be re-assuring to hear a debate on the best way to proceed when one is waiting to get to the washroom!  I think she relaxed a bit when we re-entered the hospital, knowing that her professional care-givers were much better equipped than the amateurs she spent the day with!

Joanne and I had spent the weekend with her family in Bayfield.  I had last seen Alice on Thursday of last week.  We arrived at Doug and Alice's after she had entered the house.  I must admit, I was shocked at how weak she was.  She could not support herself on her feet, nor rise without the full support of two people.  I could feel her arm bones as we held her and I worry for her poor weakened bones as we had to lift and move her.  She is getting weaker.

I'm glad that we did this.  I'm glad that my aunts are braver than I and could agree to help her through this.  But I do not want to do it again.  My stomach was in knots the whole afternoon and I think the chance of calamity was high.  We did very well, however and I think we accomplished something very important for Alice today.  Her continued decline makes it increasingly difficult to keep her safe.

Okay.  I must be off.  I'm home in my own bed and plan to spend a lot of time there, in the next few days.  We'll be back in Woodstock on Friday afternoon, for the weekend.

I must apologize to some folks--I have realized that some names had fallen off my list.  I don't know how or when this happened and I'm very sorry.  I think I have you all back in place now. 

Take care of yourselves.  Dress warm.

love, Robin.

Update # 15, October 4, 2012

Well, hello there!

It's been a month--tomorrow--since Alice was admitted to the Palliative Care Wing  of Woodstock Hospital.  We've (sort of) learned a whole bunch of stuff about hemoglobin, bone marrow, brain tumours, radiation, chemo, steroids and our health care system.  And, of course, how these impact personality, behaviour and decision-making.  Oye.  This crash course is intense!

We had the family meeting today.  Alice and Doug were there, and her sister Joyce, myself, Dr. Fryer and Dianne (Care Coordinator, or something like that).  As we expected, the news was not good.  The radiation has not provided the relief that had been hoped for.  Alice has certainly seen benefits from it, but apparently there could have been much more change for the better.  Additionally, the good effects from the blood transfusions are not as good, nor lasting as long as they have in the past.  This suggests strongly that the cancer has invaded her bone marrow. 

Sidebar biology lesson (from someone who got a C in high school biology--please correct me if I'm wrong, biologists)

    Bone marrow is the magic stuff inside our bones that produces blood cells.  Blood cells come in two fashionable colours:  red and white.  Very Canadian.  (Do Americans have three colours?  Red, white and blue?)  Red ones carry good stuff like oxygen and iron around to the different bits of the body.  Hemoglobin is a word that is used when talking about these things, so I assume that at least part of a red blood cell is made up of hemoglobin.  Or all of it.  Not sure.  I know they are shaped like donuts.  Mmmm...donuts.

    White blood cells house parts of our immune system.  The infection-fighting blood cells are white blood cells.

    Then there are platelets, which help us build clots.  I've been told that they are shaped like little plates, or shingles and build layers of themselves over and around a cut or puncture.  They are orangey-yellow.  Not sure where they end up on the red-white continuum. 

I've never been sure how these cells get from the bone marrow into our veins and arteries--anyone?

So, when Alice's hemoglobin gets low, she tires easily as the oxygen is not getting to her muscles.  The iron is not getting to where-ever it needs to go and this deficit also causes fatigue.  Hemoglobin counts in a healthy individual should be 150.  Alice's hemoglobin levels are hovering between 85 and 105.  They transfuse her when she gets below 90.  She's been receiving transfusions every 4-5 days, recently.  This suggests that she's not making much of her own hemoglobin--or not producing healthy, mature cells that can do the job they are meant to do.

A lowered white cell count means that there are not as many T-cells to fight the invading cancer.  Simple math makes that untenable.

And lowered platelet counts means more bruising--and longer recovery from bruising--so fewer platelets have more to do.  She is currently around 50;  150 is a healthier level.

Bone marrow invasion by the cancer can trigger all of these things.  It can stop the bone marrow from producing cells or mess it up so that it releases immature cells that are not ready for the heavy lifting that their job requires.

None of this is good.  Unless there is a dramatic change in the next few days,  they will likely discontinue the chemotherapy.  Given that she was taking the Herceptin (cadillac of chemo drugs) at the same time as the cancer invaded both her bone marrow and her brain...it seems that it is also not doing as much as we had hoped.  She is due for chemo on Friday the 12th of October.  Her wonderful doc (Dr. Fryer) will consult with the chemo doc in London next week and they will discuss Alice's blood counts and other things that I don't understand before making this decision.  The transfusions may continue for a while, or not.  Without the benefits of the blood every few days, I think, time will get even shorter.

So, we transition from treating and fighting the cancer to a focus on comfort and end-of-life wishes.   Alice's wish throughout this month has remained the same:  to go home. 

She agreed today to give it a test-run, of sorts.  On Monday, October 8, she'll head home for a visit of a few hours length.  Her sister Joyce will drive her home, with her walker to get around the house.  Joanne and I will meet them there--just to have some extra hands on deck.  When she's tired, we'll head back to the hospital.

We'll see how this goes.  The idea of it scares the hell out of me--too many variables for my head to consider.  But it is very, very important to her and therefore, worth trying.

I asked her today if she was planning on going home to die.  She gave me that exasperated look that I am so familiar with and said clearly, "I'm not thinking about dying yet!"  Touche.  If she can still put me in my place then she's got some untapped reserves of strength and energy in there somewhere.

She had a slow morning.  Had just been served her breakfast when I arrived at 8:35 am.  She ate in her pajamas and had trouble balancing as she sat on the edge of the bed.  I sat down behind her, back to back, and she leaned against me, as though my back was the back of a chair.  She decided to remain reclined in bed for the meeting.  Had a bit of a self-satisfied expression when it was over, having 'won' her freedom, for a few short hours, several days in the future.  During the meeting it was noted that her thinking and processing has slowed down (I think this was one of the things that they thought the radiation might address--but not so much).  This is to be expected with brain tumours present.  So, when you visit, be patient, speak slowly and simply and allow her time to work out her answers or questions.  She can lose the thread of what she is saying very easily, so try not to interrupt (a great struggle for me!).

Okay--this has been a long one, and I apologize for that.  I hope you had a snack with you to get you through it all!

The bottom line is:  she's still with us.  Keep visiting.  Keep bringing your kids and happy stories and hugs.  Keep us in your thoughts.

love, Robin.

Update #14, October 3, 2012

Hello there.

I hope I've been numbering these correctly--I haven't been checking to make sure that my numbers are in the right order!  Might have to take my socks off soon!

Alice had another busy day with lots of visitors.  She was tired and slow-moving--need help to rise from her chair to get into the wheelchair.  The porter and I had to lift her from under her armpits--her knees wouldn't loosen up to help her stand.  I asked her if her knees were getting older faster than the rest of her and she said yes.  Went to physio and then slept for half an hour.  She was just done in.  Visited with some more people;  she saw Mary and Jim McArthur early in the day, Bill Weir and Jacky in the afternoon, and Trish Weir just before dinner. 

She asked me about Thanksgiving a couple of times.  She seems to be unclear if it has passed or not.  She really wants to go to Don Weir's for Thanksgiving dinner ('cause there'll be good food!  she told me), but seems to be losing track of the days.  She is also determined that she is returning home soon, maybe tomorrow.  I asked her how she will cope at home, as she is pretty wobbly.  She told me that she would hold on to things.  I observed that she gets lots of help here in the hospital that she won't get at home and that seemed to give her pause.

I know she wants out of the hospital--she's been there for almost a month.  I just don't think she has the strength and resilience to be at home.  She is sad about this, I think, as she is aware that she does not have the families' support on this.  She and Doug are trying to troubleshoot coming home, talking about home-care and other supports, but I'm not sure that she can be safe there.

We'll see what transpires at the family meeting tomorrow.  We may have a bit of a bumpy road to negotiate.

Keep us in your thoughts.  This is a hard row to hoe in so many ways.

love, Robin.

Update #13, October 2, 2012

Good evening.

I worked this weekend and am now back in the Woodstock area.  Saw Alice this afternoon.  She was dressed and chatting with her sister Joyce, and brother-in-law Clarence.  She seems to have less energy, while being more alert and aware.  Her colour was not so good, but her voice was a little stronger.  Her hair continues to come out, but slowly, I think.  Her appetite continues to be healthy, and then some!

Doug and I arrived at the same time and walked up together.  Florence and Alec Steele (neighbours from Kintore) dropped in, too.  I haven't seen them in years--was good to catch up and reminisce.

She had lots of visitors on the weekend and even spent an hour out in the hospital's garden with Lyle and Deb.  She was out again today with Jean Sutherland.  The sunshine and fresh air has been good for her--how could it not be?

There is some sort of family meeting on Thursday morning--I expect to have more to write that afternoon.

I've applied for a 2 month leave from work, so as to give me a little more flexibility with my time.  Because my position is a 'sleep-over' one (for 2 consecutive days and nights, once per week) it means a good chunk of time out of my own home.  Coupled with trying to come home (to Embro area) for a few days each week--I felt like I was running from pillar to post.  This way I only have 2 beds to sleep in each week.

That's all for now.  I must google how to wash a pink llama's wool blanket--Alice got corn syrup on hers this morning!

love, Robin.

 

Update #12, September 27, 2012

Good evening.

I stopped in early this morning (early for me;  and I just typed 'moroning', which is about right, tonight..!) to see Alice and I found her dressed, in bed, resting.  I made her some tea and we sat quietly, letting it cool.  We didn't have much to chat about, having seen each other at dinner last night.  She seemed happy just to have company.  I had to leave around 10 am to come home to Toronto--had some appointments to attend.  I helped her up to a sitting position and left her sipping her tea.  I hope her day went as peacefully as it started.

Her hair has started to fall out. I'm not sure she has noticed yet, but I saw some on her pillow yesterday and today.  This is a side-effect of the radiation.  Not as a general rule, but because it was her head being radiated.  She noted earlier this week that it would likely come out the next time she washed it.  I imagine that she's holding out on that as long as she can.  I think she'll want her wig but I don't know how practical that will be, if she's lounging in bed most of the time.  Perhaps some knitted caps?  Crocheted hats?  Something with a flat back (ie. not a knotted scarf) so she's comfortable when reclined.  I have one or two that she might wear (she told me ages back not to bring the one with the monkey head on it, or the penguin-printed fabric)--do any of you have anything that might fit the bill?  I know you know her--no neon, nothing wild or suggesting that she endorses a particular brand of beer.  Mild, modest...mousy?  You know...Thanks.

Her hands were cold this morning when I helped her to sit up.  She said that she was not chilly, but it might be something we want to keep an eye on. And I forgot to say--she had some more blood yesterday.  If you are B positive (her type) or type O (universal donor) think about giving blood.  She's certainly finding a use for it!

That's all for now.

Must get to bed.  Going to go to work this weekend.

love, Robin.

Update #11, September 26, 2012

Hi there.

Alice had a busy day again today with lots of visitors.  Hers was the baby room today!  Great-grandson Jaxxon (5 months) visited with his mom, Breanna, early in the day and great-nephew Lindsey (Tate, 1 yr) visited after supper.  She described Jaxxon as 'placid' but Lindsey was anything but!  Happy and energetic, he kept her entertained by stealing her new pink llama blanket and putting it over his head.  He was eager to snuggle into bed with her, but as his snuggling is quite exuberant, we discouraged him from that.  He re-arranged the furniture and inspected her clothing cupboard.  He is quite eager to walk and was toddling around the room holding onto the furniture and any available people.  He's such a happy boy--Alice smiled the whole time he was there.  And his parents!  I'm sure she was smiling at Kevin and Deb, too!

She was quiet for much of the time when I was in, content to listen to the conversation around her.  She interjected occasionally, but mostly lay with her eyes closed.  I asked her during a quiet moment if she wanted so much company.  She said yes, she enjoys it when people come to visit.  I asked if she wanted to rest more (thinking the closed eyes were a sign of wanting a nap) and she noted that she rests 'enough.'

Okay.  Straight from the horse's mouth.  She likes having visitors and enjoys your company.  Don't be afraid to come in and chat with Alice and whomever else is there.

She seemed tired again today.  Speech was slow and infrequent, but she managed to teach us something: some dogs drool, depending on what they eat.  I think we were talking about chronically drooling breeds and eating dog food vs. people food.  I didn't know this before!

A new trend:  Twice today she told me that my cousin Johnathon is graduating from high school tomorrow.  Both times I corrected her, saying that our cousin Hannah is graduating tomorrow night.  She agreed with me and added that Johnathon and his wife Mel were graduating, too.  I wondered out loud if J & M were attending her graduation?  Yes, she said, getting exasperated with me, and to get their own diplomas, too! 

Hmmm....Johnathon is 31.  And married.  And, yes, he has finished high school already.  So, it seems that Alice's cognition is slipping a bit.  It was a bit unsettling not to be able to iron out the wrinkles in her version of things.  She really stuck to her guns on it.  So, eventually I just agreed with her and let it go.  There is no sense in upsetting her over what is really just a detail.  Although I'm not sure where Johnathon and Mel are going to get diplomas from St. Mary's DCVI to show her!

So, for those planning a visit, as ever, sooner is better than later.  Come while she can still enjoy your company and stories--just maybe don't expect all of her details to make sense.  Just agree with her and keep chatting.  Or take a baby with you--they are a great distraction!

That's all for now.  I'm heading back to Toronto in the morning for a chiropractor's appointment (it seems to help keep my migraines under a little bit of control, so I don't want to skip too many appointments) and to work this weekend.  I'll be back here on Monday night or Tuesday of next week.

Take care of yourselves. 

love, Robin.

 

Update #10, September 25, 2012

Well hello again.

I was in to see Alice this afternoon.  She was napping when I got there and then went to physio--so I sat by myself for the first 45 minutes or so.  Doug also came in and we waited for her to come back.  She was tired when she returned but glad to see us both. 

She continues to move smoothly and fairly easily although her balance remains unsteady.  Her speech was pretty even, too, although that seemed to waver as her fatigue mounted.

She's awfully happy to be done radiation--sounded the "I'm done treatment!" gong in the waiting area of the radiation suite.  Johnathon (Glover) has video of it that we can pass around.  It is 30 MB--so those of you with a slow internet connection might want to view it at someone else's house!  She smiled as she told me about clanging the gong.

Many, many thanks to those of you who met her at radiation over the past two weeks.  We appreciate your efforts very, very much.  It made it less worrisome for us and re-assured her that there would be a friendly and familiar face waiting for her in London. 

I spoke with Dianne, the Care Coordinator for the Palliative Wing.  She understands that Alice's goal is to go home and thus, that is the hospital's goal for her, too.  However, she will not be discharged hastily as there are many conditions to be met and supports that need to be put in place prior to this.  Among them:  She has to be stronger.  They will not discharge her to an environment that she is not safe in.  Given her poor balance currently, this means staying in the hospital.  There are psw (personal support worker) hours that can be utilized in the morning and at night (for things like dressing and bathing), but seemingly not in the day time.  If things go ideally during the day, this would not be a problem.  However, the circumstances are such that ideal is a pipe dream.  Her condition will deteriorate and she and Doug will need help trouble-shooting each loss of skill or new challenge that comes along. 

So, they are supporting her idea of going home while holding the realistic view that it may (probably?) not happen.  If and when she gains some more strength and resilience, she will be able to go out for the day or afternoon.  I think this is a much more attainable goal.  I don't think she's even been down to the gardens at the hospital, yet.  Visitors:  correct me if I'm wrong on that, please.

I asked Dianne if there was a chance that the docs would want to repeat the radiation, if they are pleased with the results.  She was very clear:  No, it is a one-shot deal.  I guess the side-effects would start to out-weigh the benefits.  Chemo is going on, for now, as are transfusions as needed.  The hospital staff and Alice will be constantly assessing the cost-benefit balance of these interventions. 

Thanks to Aunt Nancy, I learned today that you can buy parking tickets the cashier in the main lobby.  I'm not sure if they have a minimum amount you must purchase, but they only cost $2 per ticket.  I bought a bunch today and left some with Alice.  She would love to be able to pay for your parking--it would give her such pleasure to be able to do something for the people who are doing so much for her.  Please allow her to give you this small gift--if she remembers that she has them!

What else can I tell you?  My cold is almost gone--have I been saying that for days or does it just feel like that!?  Jo is back at work in Toronto--she may come down this weekend.  I'll be here until Thursday morning of this week and I'm planning on going back to work this weekend.  If I can change some plans around at home I'll return here Tues-Thurs of next week. 

So--to recap--Alice is in decent shape, but tired.  Hopefully her energy will come up without the fuss and bother of going to London for radiation everyday.  Discharge from the hospital is not assured and certainly not in the near future. So, she is safe, her mind is intact and she seems game for visitors.

Keep your good thoughts coming.  Thanks so much for all the notes--they are really important to keeping our own spirits up.  I'm sorry that I cannot reply to each one individually--I hope you can feel my gratitude through these updates.  Thanks for reading.

love, Robin.

Update #9, September 22, 2012

Good evening all.

Hope you're having a good weekend.

This update comes courtesy of the Wonder-Aunts:  Joyce and Nancy.

Alice has started chemo again!  Had her treatment on Friday morning--so two weeks later than planned (she went into the hospital 2 weeks ago, from chemo.  They didn't do the treatment but admitted her due to seeming behavioural/personality changes).  She only has chemo once every three weeks, so has not missed as much as it might seem.  Also had a unit of blood on Friday.

Virginia and Blake (nephew) met her at radiation on Friday afternoon--she was a little nauseated from the ambulance ride but seemed to settle quickly.  Was in and out in good time and back to Woodstock hospital.

Joyce and Clarence were in to visit today and found her in great shape.  She has her customary grip of steel back--pulled herself to a sitting position with her 'weak' hand (Joyce:  is this her small (right) hand or her newly weak left hand?) and walked holding onto Joyce's arm and then without holding on at all.  Had put on her shoes herself, too.  No noticeable favouring of her left side.  Speech was smooth and with few pauses, memory was clear and she was just brighter in general.

So, good news is good.  It may just be short-term, but we'll take it.

love, Robin, whose cold is ebbing v-e-r-y s-l-o-w-l-y

PS  Jo and I have hot water again!   Mmmmmbubbles......

Update #8, September 20, 2012

Hi everybody.

This update is courtesy of Aunt Nan.

Alice was to have met with her radiation oncologist today--not sure why, but this was cancelled.  Worked out fine as she was able to meet with her chemo oncologist.

He feels that the herceptin (cadillac of chemo treatments) was working and could continue to work, but that the priority right now is to make as much headway (!) as possible on the brain tumours.  He was able to introduce realism into the 'end of life' discussion (ie that the damaged caused by cpr on cancer-infected ribs is tremendous--a terrible image), but reassured her that they would continue to give her blood transfusions and treat infections, etc.  This doc declines to give a 'prognosis' as there are too many variables and each case is different.  Also--a bit of a surprise to me:  he wants to see her again in 4-6 weeks!  I thought our time-frame was perhaps shorter than that, so this is comforting to me.

Nan said that Alice was doing okay today, though speaking very softly.  This seems to be her way now, so we'll all have to lean in a bit closer, I guess.

My head cold is still with me.  Also:  our hot water heater 'bit the green weenie' this week.  Nice to have a distraction from other stress---not!  Unfortunately Jo discovered this lack of hot water on Wednesday morning--in the shower.  Yikes!!  New one coming on Saturday and until then we are showering up the street at Heather and Lynn's.  Thank goodness for good friends.

And good family, too.  You're all in our hearts.

I must get to bed and keep trying to shake off this cold.  Hopefully there will be a hot bubble bath in my near future.

Take care.  Keep good thoughts.  Stay warm.

love, Robin.

Update #7, September 17, 2012

Hey there.

Alice went for radiation treatment #4 today.  Was back in very good time and had chicken primavera for lunch.  This new hospital seems to have thrown out the old menus and the old way of cooking.  I've never seen hospital food that smelled this good.  Tonight's dinner was roast beef, veggies and mashed potatoes.  And always dessert.  All these meals need is a glass of wine!

Okay, where was I?  Right--radiation.  Then lunch and then she met with the PT and did some more walking with the four wheeled walker.  Not sure what she thinks of that.  She was very, very tired and not up to saying much.  Perked up a bit as she ate dinner (see above).

She now has her own stash of green tea in her room--all you need to do is take her styrofoam cup around the corner (turn left out of her room and then right.  Go past the nurses desk and there is a fridge and hot water dispenser and ice cube dispenser for patients) and fill it with hot water.  Put one of her tea-bags in and remind her to let it cool.  Presto!  Green Tea without getting lost on the way to Tim Horton's.  Also has Mint Smoothies (thank you Lisa!).  They were torturing her today.  She said, "I can smell them, but I can't reach them!!"  She likes them sliced up a bit, into smaller chunks.

Was walking pretty steadily today.  She continues to be somewhat aware of her left-side weakness, although it wasn't too noticeable today.  We did find out (the hard way) that she has trouble sitting up straight when the bed is not flat.  She was sitting, facing sideways, with her feet and knees pointing off the bed.  With the combination of the slightly raised foot and more-so raised head of the bed and her muscle asymmetry, she had a hard time staying up.  Would tilt her head back (can't remember why) and s-l-o-w-l-y fall backwards onto the mattress.  Never hit her head on the guard rail.  We finally flattened the mattress so that she could balance better, while eating. 

  

Speech was a little slow but not too bad. 

We're back in Toronto now--my sore throat has devolved into a head cold.  Better if I'm not passing my germs to those with bigger problems.   We may be back by the weekend, and maybe it will be next week.  We'll see.

Take care everybody and thanks for the visits and flowers and cards and good thoughts.  It all helps.

love, Robin.

Update #5, September 14, 2012

Good evening, all.

Alice had her third radiation treatment this morning.  Joyce met here there and all went well.  Alice is not enjoying the ambulance ride to London--says it is noisy and bumpy.  Her hair has not fallen out yet, so that's good.

Today was not a great day.  She slipped getting out of bed this morning and the nurse found her on the floor.  She says that she was not down long.  Left shoulder was sore, but no bruising evident.  Also had a (confusing?) moment in the night.  Had gotten up to use the washroom and bumped the paper towel holder.  It fell open and a number of paper towels fell into the sink.  She tried to put them back into the holder but it wouldn't stay shut.  The nurse found her trying to slam the paper towel holder shut.  Helped her with that and then helped her back into bed.  She has now been 'alarmed.'  Has a motion alarm pinned to her shirt to alert the nurses if she tries to get out of bed on her own.

Both of these things might be due to her poor balance today.  She was leaning very heavily on both of us today and seemed largely unaware of it.  At one point, Jo and she and I got stuck in the bathroom--we were supporting much of her weight, trying to keep her iv pole and tubes (just in for a medication) out of the way and then her feet quit working.  We were all staring at them, in that little tiny room (the pole and I were half in the shower), trying to will them into action with our collective consciousness.  Didn't work.  Thank goodness the nurse poked her head in and asked if we needed help?  YES! Got her tucked into bed and reminded her not to get up without ringing first for the nurse.

Still herself, still able to laugh.  Speech was slow again today and processing needed extra time.  Very tired--napped a lot.  I hear radiation will do that to you.

Got the results of her CT scan of the other day (chin to crotch, basically).  Nothing much has changed.  Liver nodules the same size (3 of them, 1 cm or so).  Extensive bone metasteses (cancer spots that have spread from somewhere else).  Kidneys clear, lungs clear, pelvis clear.  There was a lot more detail but I haven't finished looking it all up and so don't fully understand it.  So, not good news, but not bad news, either.

She has the weekend off radiation and will need it, to rest.  I think the travelling to London and back is a lot harder on her than she anticipated.  Still asking to go home, although Dianne, the Care Coordinator has been quite straight with her that she is not well enough right now.  It is within the realm of possibility that she will go home, but not until she is much stronger.  She has to be safe and Dianne is quite clear that Alice has been the main care-giver in their home.  We feel better that someone else is reminding Alice of these things too.

I may not go in tomorrow--I have developed a sore throat.  Will try to shake it off with warm salt water and a dirty sock.  (I'm an old wife now, so I get to try all the old wives' remedies, right?)

Looking for volunteers in the London area for the next week or so.  She gets transported to Vic Hospital each day (usually morning) for radiation.  The treatment itself takes about 5 minutes, but I don't know how efficient the transportation is.  She has asked for someone to meet her there, just to have a friendly face and a helping hand, should she need it.  You may be there for 15 minutes (if her rides are running well) or a couple of hours if they are not.

 

Sept 17. 10:45 am

Sept 18. 8:45 am
Sept 19. 9:00 am

Sept 21. 2:15 pm

Sept 24. 11:45 am
Sept 25. 11:30 am

 

These are her appt times.  We would ask that you be able to be there at least 20 minutes ahead of the noted time.  Just to sit with her and get her a cup of green tea or notify the nurse if she needs help.  There's a Tim Horton's right in the waiting area, fish tanks, a library, and really friendly fellow-waiters.  It's a pretty neat facility.

 

If you are interested, please let us know this weekend.  Write back to me here, or call Jo's cell 416 882 6266 or Nan's house  519 475 4201.  Thank you thank you for helping out--it saves us a lot of driving and back and forth-ness.  And you get to have a short, helpful visit with Alice.  See?  Win-win!

 

Okay.  There's a cup of tea and honey calling me.  And a dirty sock!

 

Good night.  Sleep tight.

 

love, Robin.

Update #6, September 16, 2012

Hi all.

Hope you all had a good day and could enjoy the sunshine.

Alice had a pretty good day.  Had lots of visitors (as usual!) and enjoyed them all.  Continues to know everyone and has good conversations, even if they are a little slower-paced than we are used to.  She was moving pretty well (just needed monitoring as she walked, instead of hands-on support) although still seems to be experiencing some left-side weakness.  Her left hand (her dominant one, for most tasks) is not very cooperative and she is tending to use her right one most of the time.  Left leg was a little more sluggish than the right, but again, better than it has been.  Today was the first day that she commented on this asymmetry--noting that her left side was not as strong.

She has established a 'sign-in' book to keep track of her myriad visitors--she will direct you to it, when next you see her!  She has some cards and flowers in her window-sill and a lovely picture of her guardian angel from her great-niece Isabel.  Really enjoys green tea (with an ice-cube or a little cold water in, to cool it down), and it seems easiest to drink from a styrofoam cup (easier to grip and squeeze a little, not so slippery as a tea-cup) with a straw.  Less chance of spills, with these two things in place.

I think we may have reached the 'new normal.'  She's having good days and not-so-good days.   She looks frail and her voice is soft and sometimes hesitant, but for the most part, she's as sharp as she ever has been.  When she's tired it's pretty obvious and we leave her to nap.  She seems to enjoy all the company as even short visits help to pass the time. 

We still have an opening to meet her for radiation on Monday September 24 at 11:15 am  (appt is at 11:45) at Vic Hosp in London.  Let me know if you are interested.  Many many thanks to those who snapped up the other days of radiation appts.  We appreciate it very, very much.

For those of you whose email addresses I have just discovered--let me know if you want some of the older 'updates'.  There maybe info or context there that answers some questions you may have.

Thanks again for your concern and energy.  We're finding our footing through this bewildering process, thanks in no small part to the support we are receiving from you.  And if anyone is getting these missives and doesn't want them just let me know and I'll remove your name.  No worries.

Forgot!!  Her hemoglobin has come up!  103, last I heard (they like it to be over 100;  they transfuse once it gets below 90).

Good night.

love, Robin.

Update #4, September 12, 2012

What a difference a day makes...

Or two days, in fact.

Alice seems to be improving.  The steroids are working their magic and the swelling in her brain must be coming down--her speech has almost lost its hesitancy, she can walk short distances on her own, can get into bed and stand and sit by herself.  The weakness on her left side is not nearly as noticeable.  She moves more smoothly and naturally, smiles easily and jokes more readily.  Still needs help getting in and out of Nan's new SUV/car/redthingy, still speaks softly, still tires easily but holy cow!  A totally different woman than we saw Sunday and Monday.

She met with the radiation oncologist today (so did Nan and Jo and I) and decided to go ahead with radiation treatment for the brain tumours.  (One tumour is very large--4.2 cm and two others are tiny--1/2 cm each.  One tiny one is near the big one and the other is in another part of her head.)  Had her first radiation treatment today.  A long day--she was up and had a shower and breakfast.  We arrived shortly after nine and she was having a meeting with the PT and the OT.  Went for a short walk around the ward with them.  Did well and they have prescribed a 4 wheeled walker to keep her steady as she goes.  Lay down for 20 minutes and then we headed into London to meet with the radiation oncologist.  Met him around 11:30 am, grabbed some lunch and then had a radiation mask fitting.  They mold it to her face and head and make markings on it to pinpoint where the radiation will be aimed.  The head part is for the aiming and the face part is for protection from the radiation.  Had a 2.5 hour break, during which she dozed in one of the 'nap beds.'  (I would like a series of 'nap beds' strategically placed all over the city.  Will someone look into that for me?  Thanks.)  Radiation done at 4 pm and we were on the road back to Woodstock by 4:45 pm.

Backtrack:  Dr. Ahmed (didn't see Dr. Reid--don't know why) prescribed 10 days of radiation, done on consecutive weekdays,  He could have prescribed 5 days--but its the same amount of medication and the side effects are less if spread out over 10 days.  There's a service called Voyageur Para Transit that will pick her up and return her to Woodstock Hosp (they don't have a radiation suite) each day.  She'll lose her hair again--she was quite disappointed by that as her hair is only a couple of inches long, since falling out in January. 

This treatment is to shrink the inflammation (beyond what the steroids can do) in the brain tissue and to hold off on the inevitable cognitive decline that occurs with brain tumours.  She is not a candidate for surgery as the big tumour is too big and because they are in more than one place in her brain.  Surgery would do more harm than good.

After leaving the hospital, and driving east out of London, she insisted on taking us out for dinner!!  We were all flabbergasted.  And tired, wanting the long day of waiting and seeing to be over.  But, it seemed like the least we could do (!) so we stopped at Trissa's for dinner.  Alice had the quiche, Nan had the liver, Jo had pasta carbonara and I had souvlaki.  She was obviously tired but kept going.  Meanwhile, the hospital had called Aunt Nan's house wondering where the hell we had gotten to, since 10 am!!!!  We called back and promised to have her home by 7 pm.  We squeaked in under curfew with only seconds to spare!  Helped her change into her pajamas and were almost ready to tuck her into bed, when visitors arrived!  She greeted nephew Rob and Lynndel warmly and chatted with life and energy in her face.  We said our goodbyes and walked out with Nan, marveling at the change in two short days.

Two days ago, she couldn't rise from a chair without assistance.  She had to walk with a support person on either side, could hardly respond to questions and listed to the left, noticeably.  Her affect was flat and her movements were uncoordinated.  Today was not perfect, but such a relief to see her functioning at a level much closer to average.

Now, I'm not getting ahead of myself.  She still has all the same health risks:  cancer in various places in her body, hemoglobin that won't stay up, hand tremours etc. She has yet to meet with her chemo-doc to discuss the bone marrow that doesn't seem to be doing its job.  None of that has changed.  Time is still relatively short.  But she can think and express herself now.  She can do things for herself and start to reclaim the dignity that fell away so quickly.  And I don't have to worry about her every second.

So...Jo and I are home in Toronto for 2 nights.  We'll be back at Nan and Chris' for the weekend, and see from there.  Since we have the day off, so do you!  No update tomorrow.  We will be snoozing and snuggling our kitties and visiting Jo's mom and recharging.  Hopefully, I will remember how to sleep now!  We sat with some of the cousins last night after dinner and laughed and played pass the baby.  Wonderful.  It helped so much.

We love you all.  Keep good thoughts.  We're not out of the woods--but how nice to see the sun.

love, Robin.

Update #3, September 12, 2012

Hi all.

So, Alice was much better today.  Was walking short distances on her own, more life in her face, easier conversation.  The pauses were more natural, and not as ponderous.  A relief.  I think each day is a brand new mountain.  We'll see how high we have to climb when we get there.

She got her own room today--had been sharing.  She's in the same area:  rm 2214.  This is in the 'official' palliative care hallway.  More flexible with visitors (timing and numbers).  She liked having a room-mate, but the nurses pointed out that she has a lot of guests and perhaps her own space would be better? (And her new room-mate snored like a trucker...!)

She had a CT scan today on her stomach and abdomen--chest, too, maybe?  Can't remember.  No results yet.

Had a unit of blood yesterday and another today.  Bad news:  her hemoglobin did not rise after yesterday's blood.  From this we conclude that the cancer has invaded the bone marrow quite thoroughly, I think.  Platelets are also dropping but not to a crisis point.  Just another trend they are keeping an eye on.  Also has cancer in her liver, hence the jaundice (which I don't find noticeable).  And the tumour in her brain.  None of this is good, in any way.  Had a discussion with her doc, Dr. Fryer and Doug today.  She is very kind and plain-speaking.  Doug was pretty quiet and grew more and more pale.  He is breaking my heart.

I think, if you want to visit, plan it soon.  Short visits are fine.  She's eating well--thank you steroids! and paying attention to what's going on around her.  She's herself, just slower than usual.  Still teases me and takes teasing well.

OKay.  I must to bed.  Keep those good thoughts and helpful notes coming.  We need them.

love, Robin

Update #2, September 10, 2012

Hello again.

Another day, another chunk of hard news.

I spoke to Alice's doc this morning and she confirmed that Alice has a 4.2 cm tumour in her right frontal lobe.  Not good.  Other little tiny ones, too.  There is some bleeding and some inflammation around the tumour, which is to be expected.

And her bone marrow involvement has increased--hence all the blood she's going through.

There are radiation options for the head and chemo options for the bones--she will have to decide what she wants to do.  Either way, she is looking at a very short period of time.  With treatment, survival might be a few weeks to a few months.  Without it, a few days to a few weeks.  Not good choices.

Today she seemed a little brighter, still slow, but managed to get a few teasing remarks out (and I was not coveting her ice-cream!!)  Movements were a little harder;  it seemed to take longer for the brain's messages to get to her hands and feet.  Needed a nudge now and then to get walking (with 2 support people) and help with cutting her meat.  Still moving, talking and thinking very slowly.

Visits are a good idea--not Wednesday this week, as she has an appointment with the radiation oncologist in London and I expect she will be exhausted by that.  She may not seem to participate in some of the discussion, but she is listening!  She doesn't seem like she is on the ball, but she's taking a lot of it in.  If it's possible to come earlier in the afternoon, she has a little more focus, then.  Tires easily.  Woodstock Hospital, rm 2223.

Thank you thank you for all your kind and encouraging notes.  They are keeping us afloat.  Keep sending them!

Must keep moving--I've got some of Alice's old Teacher's College friends to find on the internet.

love, Robin.

Update #1, September 9, 2012

Hi there, my dears.

It's been a hard day.

My mom is quite ill, although we don't know exactly what is going on.  She told me that she has a brain tumour but this was not confirmed by the nurse.  The latest we've heard is that she has a brain bleed.  She is definitely 'altered'--moving and thinking and speaking very slowly.  Has to concentrate very hard to get the tea cup to her mouth, to respond to a question, to find her pocket with her kleenex in.  Doesn't seem to be aware of this change of pace.  Also doesn't seem to be aware of options--using a straw instead of raising the cup, for example.  Just looked at me oddly when I suggested it and continued to raise the cup v-e-r-y s-l-o-w-l-y.

When we arrived, she was sleeping and she opened her eyes when I raised the blanket over her.  She frowned and said slowly, "I know you."  I responded, "Yes, I'm Robin, your youngest."  She smiled and said, "I shouldn't say this."  What?  "The bratty one!"  I laughed and said, "So you do know me!"  She knew Joanne and remembered that we had come from Toronto.  Introduced us around.

She is a little jaundiced.  Her potassium is low.  Her hemogoblin continues to drop (it's 89 and she's had 4 units of blood in the last week or two.  Should be over 100).  Her self awareness is impaired.  Her co-ordination is affected--couldn't tie her robe sash in a bow, got stuck with her glasses halfway on her face, couldn't get the teacup to her lip and couldn't tip it enough to get the fluid into her mouth.  Could get jokes if they were simple, short and she was given enough time.

Doesn't look good.  I'm hoping to be able to talk to the doc tomorrow.  I've left Jo's cellphone number at the nurses' desk.

My step-father is very sad and confused and trying to keep his spirits up.  He is not well, either.  Not able to get around much and not able to process 'doctor-speak.'  He visited yesterday, but not today.  Waiting for my call tomorrow, after I speak with the doc.

I think that if her liver is involved (jaundice) and her brain is affected that she is not long for this world.  But we'll see what the doc says.

We're staying with Nan and Chris for a day or two.

Keep good thoughts for her.

Thanks for listening.

love, Robin.