Mama, by Eric

Mama – you made me grow,
Created me and nurtured me,
In every way you gave to me;
A debt I can’t repay, yet owe.

And though one I can’t reimburse,
Know you were my universe:
Your eyes my skies, so blue and clear,
Your voice the only sound I’d hear,
Your smile the sun to dispel gloom,
Your arms’ embrace my second womb.

The painful day you asked to leave,
I had two minds directing me;
Two wishes reached imperfectly,
And neither sadness could relieve:
For you, I hoped you’d go away,
But for me, I hoped you’d stay.

My life henceforth is split in two:
The part you’re in; and after you.
But grieve me not though you are gone
Be peaceful now, and mama, know
The joy I’ll have in passing on
A debt that can’t be paid, yet owed.

I hope you know what love you wrought,
What love is yours, what love you sought,
For you’re a friend, aunt, sister, wife,
And to many more maternal;
If love alone could save your life,
Your time would be eternal.

ERIC'S EULOGY FOR ANNE

One year ago, so far as we knew, my mother was in perfect health. A few days ago, I watched her take her last breath. The time since her diagnosis has been very difficult, for Anne and for everyone who loved her. The road ahead looks to be difficult too for those of us left behind, our only comfort being that we had the good fortune of knowing her, and knowing she will not suffer anymore.

This is a time of great sadness and pain, and though she wouldn’t want any of us to experience these hardships, she, being the most sympathetic person I knew, would fully understand and expect us to. There is so much that is tragic about losing her, and the pain is complex. But we have all grieved for Anne, and will grieve for her in the coming days, weeks, months, and years. Today I wish to give voice to happier thoughts as well, because happiness was one of her defining qualities; happiness was a prominent part of her experience, and of the experience of people in her presence.

Joy

My mother was the happiest person I knew. She once declared, in fact, to general astonishment, that she’d “never been depressed.” She had a dazzling, ubiquitous smile and a genuine, enthusiastic laugh. Anne always thought that she had the best childhood, the best parents, the best friends and the best family. She appreciated all the good things in her life, and would always remember those good things when confronted with negative experiences. After she was diagnosed, she told me that it wasn’t so bad because we – the family – had always been so lucky. Part of this ability to be happy may have been innate, but not completely, I believe; it was part of her outlook on life, and something she worked at.

Anne took great pleasure in simple things. If she had a deck of cards, or a good novel, or was watching television, she was very happy. She loved massages and talking to people. She never let anything get to her, not because she was immune, but because she didn’t want to spend time feeling irritated. It was something she always tried to instil in us (particularly me and my father), to not be bothered by problems irrelevant or outside our power, or both. She also loved to learn and work on new and various projects or jobs. From many memories that come to mind from over the years, I recall that she tried tap dancing, making stained glass, and studying Chinese opera. She and my father took great interest in renovating the two houses I grew up in, and accomplished impressive tasks. I still can’t believe that she laid down much of our hardwood floor with professional perfection. In her life my mother had several jobs, and she excelled and took pleasure in each of them. She took what was available and made the best of it, and was so successful that you might have thought she’d chosen her paths with greater agency.

She also knew the importance of living in the moment. For most of Anne’s life, good moments were abundant, and when the bigger picture was less rosy – living under the poverty line, dealing with crazy adolescent children, losing her parents – she knew how to enjoy the simple pleasures. This was proven to be true again when the cancer came, as she could put such thoughts aside and lose herself in a card game, a good movie, a foot massage and the company of her loved ones. It was something that amazed us, the family, as well as other friends and visitors, and something that was frequently remarked upon; how could someone in her position be so happy? I recall one day in particular in the last year, a day in early May on which she received some bad news from a doctor. It was the only day in my life I’d seen her down. That night Miriam and I lay next to her and cried, saddened by the reality, and also to see our invincible mother look defeated. But I know that at some point between then and the next morning she made a conscious decision to be happy, because when we greeted each other after rising, she was smiling; and she gave me a big hug, and said good things, and she might as well have said, “I’m not going to let this thing ruin my experience.” And she didn’t.

As the cancer progressed, her good moments became fewer and farther between, but she still knew how to enjoy them. Despite all she’d been through, all the surgeries, tubes and disappointments, the constant degradation of quality of life, she was often the most positive and upbeat person in the house. It’s important to mention this because she actually kept us going.

Love and compassion

My mother had a great capacity for kindness and love, and especially for unconditional love. I find it remarkable that she never spoke or acted unkindly to me in her whole life. It wasn’t just her contagious happiness that drew people to her, but also her compassion. She was also acutely sensitive to the feelings of others. I was frequently surprised to hear her express what people in particular situations might be feeling, surprised not only by how much she thought about others, but by her profound insight on a great variety of emotional issues. It was perhaps due to her love, compassion and insight that she also had a great ability to console people in emotional distress. You always felt better after talking to Anne about your problems.

My best friend Steve Armstrong wrote something nice encapsulating these qualities: “She had this way of making everything in this world OK, and all the worries and fears, or concerns seemed to melt away with one of her smiles. I've always had some nervousness and shyness in me, ever since I was a little kid. But I can honestly say that your mom made me feel more comfortable about myself than anyone I've ever known. I still remember as a teenager the first time you brought me over, and we were eating her chick pea salad and playing with the cats. I felt so nervous and shy, and your mom was so nice to me that I almost started to cry.” These past few days, I have been enormously comforted to hear similar testimonies from many, many people.

Courage and selflessness

This was a year of intense emotional, psychological and physical challenge for Anne, a year of constant disappointment in terms of her recovery, and she survived it with courage both inspiring and poignant to behold. Her concerns remained ever for her family. From her diagnosis to her decision to leave us, she only worried about the consequences of her illness in terms of how we would be affected.

I have come to believe that a sudden death is easier on the victim and harder on the bereaved, whereas a slow death is harder on the victim and easier on the survivors – relatively speaking, of course. It’s important to those losing a loved one to feel like they had the opportunity to say everything they needed and wanted to say. It is a testament to Anne’s infinite compassion for her family that she considered this time a great gift.

If you knew Anne’s love, compassion and positive nature as a friend, you can imagine what it meant to me to be her son. She was the most important and beloved person in my life, and it is impossible for me to see the world now the way I did when she was alive. But like her, I choose to look at the good side of all this. The enormity of my grief, and of the emptiness her departure has caused, is, after all, a reflection of the vastness of her love; and for me, a lifetime of good memories. I learned so much from her, and will continue to learn from her. I choose to live, love and see life the way she did.

Please remember these things about Anne. I can’t think of a better legacy than that people follow her example in enjoying life’s small and great pleasures, making the best of situations, loving family unconditionally, and being compassionate. Also remember to smile all the time and laugh a lot. Smiling is one of the most underrated tools for happiness. If you knew my mom, picture her now – I bet she’s smiling.

FOR THE LOVE OF ANNE

Anne believed that humans have their own responsibility, collectively and individually, to make the world a better place. Her heart was with disadvantaged people or outcast animals. Thus in lieu of flowers, Anne would appreciate a donation in her name to any of the following organizations:

Red Cross Nordic United World College (Norway)

United World College of the Adriatic (Italy - special page for Anne)

Randolph County Animal Shelter (Alabama)

Thanks to everyone.

Anne Meredith Stevenson Ginestier 1947-2011

Anne died at home on January 30, surrounded by her immediate family and having received enormous support from friends and neighbours. This extraordinary woman had a gift of love. She gave abundantly, and has been repaid a thousand times over by so many who held her affection over the years.

Born in Tennessee, married to Jean-Paul from France, she lived in the U.S., France, Cameroon, England, Switzerland, Norway and Italy, as well as Canada. She leaves her husband, her two children Miriam and Eric, and her foundling Anne-Marie. Anne endeared herself to everyone in all the places she lived and worked: 4 years in Cameroon, 20 years at the Toronto French School, 9 years at the Nordic United World College, 5 years at the UWC of the Adriatic. Over those years, she effectively adopted hundreds of students, who embraced her as a surrogate mother.

She left us all too soon. An incredibly positive, cooperative and gentle patient, she was much admired by her doctors and nurses, and put up a strong fight against her peritoneal cancer, accepting suffering and many setbacks with grace and practically never a complaint. In the last months, she did know, and told us, that this malignant monster was taking over, not allowing her otherwise strong, healthy body to carry on living.

Death is indeed a major trauma for close family and friends to have to go through, but Anne died peacefully and fearlessly, imagining the place she was going to would be much like the place she was before she was conceived. . She said very recently: “Well you know, where I’m going, I don’t think it’s going to be very far... Not that I believe in all that ticky-tacky-wicky-wacky... stuff... But I just don’t think I’ll be very far.”

Pictures

No news - Anne is still hanging on, still peaceful.
We thought we would post a few pictures of these last weeks.
Love to all,
JP, Miriam, Eric

Little to Tell

JP:
I know many of you would like to see an update ... but there is little to report. On Friday Anne said to each one of us she wanted to go, and asked us if that was all right with us. We all said yes.

The doctor came, heard the same request, and increased both her sedation rate and her hydromorphone rate. She went into a coma later that day, and since then has had a mild and short awakening (1 minute?) on Saturday morning, then an even milder and shorter one Sunday morning. We understood she would be gone in 2/3 days, but here she is, 6 days later, still breathing, still in a coma, still getting nurse visits twice daily for an injection and general assessment, still getting her mouth hydrated regularly, still looking peaceful.

We are all doing our best here, and again thank you all for your support.

Transition Looming?

(JP:)
First we want to thank all of you who have helped, who have reached out to us through blog comments, emails, facebook messages, letters and cards - it is important in times like this to feel there is a network of support.

We have been around her constantly in the last days. We have all had a chance to have close moments with her, and have had the opportunity to read to her some of your communications.

Anne's pain medication was increased this morning, and has effectively knocked her out for most of the day, although she did see two episodes of The West Wing. She is drinking less and less, but still vomits, and appears to be gently fading away...

Thankfully, she is peaceful and without pain.

Thank you again for being there.

Day by Day

(Still JP)
Anne has had a pretty good day today, but was sick a few times last night and this morning (some morning vomiting is expected daily). Has had less drink and no food, but remained alert most of the day and received 3 visitors. Also her brother Jan is arriving tonight.
We thank people who have sent flowers but ask you to restrain yourselves, as there are already more than a lot.
Thanks again for all your moral support.

PS: Nicole, the manufacturer of Anne's green "boubou" seen on the top photo, is one of our guests now here.

REPRIEVE?

JP writing:
Anne has had a good week, all things considered. She is still very weak, but is experiencing less pain and nausea, and has been enjoying the company of some old close friends who have been staying with us. She has been drinking more, but is still mostly unable to eat.

We are glad she has maintained more alertness by choosing to use less sedation than planned, as the new dose of painkillers seems to be doing the trick.

She is looking forward to seeing her brother Rick who arrives tonight. We want you all to know that she is comfortable, happy and well surrounded.

We will try to post regular updates.

Bowing Out

JP again here:
A few weeks ago, we were all hoping against hope that Anne would be given a chance by fate to pull through. She was encouraged by us, and had maintained a positive attitude throughout the ordeal, as you all know from reading these chronicles.

Around then, one day when I bid her good night and added “get better, love”, she answered: “I’m not going to get better. This is something we just have to deal with, and it’s no use kidding ourselves”. She also expressed her wish that, when the time came, she did not wish to be kept alive by artificial and invasive means, and we all supported her in this.

Even so, our take was to hope for a period of relative comfort and stability that might last for some time. The latest change, last week, from multiple daily painkiller (and other) pills to a hydromorphone pump, was expected to provide some effective relief from increasing pain and nausea. However, on Friday, Anne became nauseous to the point of vomiting everything taken in, even water – and this has continued the whole weekend. She feels the time has come.

She is starting sedation this evening, and is expected to slip into less and less consciousness in the days to come. The doctor expects she will be gone within two weeks.

While she, and all of us appreciate help and sustenance from loved ones, we feel that this is an important time for the family to be alone together.

All the gestures, food, messages of love and support that have flowed in this past year have helped Anne and the rest of us immeasurably. Thanks to you all.

We will keep you posted.

Electronic confusion

JP here.
A scam was sent out in my name again (Facebook greeting cards - jpginestier has sent you happy holidays ...)
However, yesterday I did send out a real letter attached to an email with subject January 2011.

New Year Blog

(This is JP):
Anne is not too keen to be writing. She is resting a lot, and is more circumspect in her choice of activities.

Yesterday there was a positive development: she had been in much pain for the 2 prior days, and had just had her third really poor night. However, the palliative doctor came to see her and decided it was a good time to switch from her painkiller pills to a morphine pump, and last night she had a deliciously long and pain-free sleep. (She has also given up most of her other pills too, with his blessing). Today has been very good, but she does have nausea - apparently a known side-effect of the morphine, for which she does have injections available, but wishes to hold off a bit to see if it will subside on its own.

She is now also enjoying a hi-tech air mattress, just delivered, thanks to the community care people.

We have had a lot of support from good friends, family and neighbours over the last while, and more visits are planned for January, some now beginning to stretch into February.

We continue to take each day one at a time, and to enjoy life as much as we can, savouring the good moments and good experiences, which are plentiful.

Christmas post

Hi all,

Eric here. Anne has asked me to update the blog as she hasn't been feeling up to it lately. Feel free to comment, however, as she does use her computer regularly and enjoys hearing from you.

Her days are up and down now, and it's difficult to predict how she'll feel from one hour to the next. Happily, she has plenty of good moments, but there are hard times too. It's important to have a lot of family time these days and Christmas has provided the occasion. Miriam has been here for a week now, helping take care of Anne in a big way and being that much needed breath of fresh air. They've spent some time making beautiful Christmas decorations out of paper, and Miriam has helped make aspects of Anne's care much more efficient. Rick is here now too, also helping to round out the picture and raise our spirits with his profound kindness and sense of humour. Viva has most recently arrived and made a warm situation even better.

There's not much more to say except that Anne is receiving excellent care at home now, with daily visits from the nurse and weekly from the doctor. We wish our friends and loved ones everywhere a merry holiday season, and encourage the use of this time to connect with the important people in life. All the best!

Christmas in our sights

These days my low energy makes me spend much of my time in or near my bed, except for trips to the North York General Hospital where I get drained, and the odd other hospital visit. However, I have a doctor who visits me at home once every 2 weeks, or more often if necessary.

For the past couple of weeks, I have been concentrating on getting stronger - after a drain I have two to three days when my appetite is good, my capacity is at a maximum, and I eat all the full fat food that I can get my hands on. By day four though, the liquid has built up again and I can only eat in bites here and there. Starting the week after next, I will be going in for 2 drainings per week, hoping to be more comfortable.

JP bought me a wheelchair last week so that now I can contemplate leaving the house. I had hoped to go to one of his Christmas choir concerts, but nearer the time I realized that I was too tired to be in one place for a couple of hours at a go. I have been out in the chair for a brief shopping, so it does help.

Miriam was home for a couple of days this week, and she and JP's sister (also here for a visit) shopped for a Christmas tree for the living room. We spent an evening making decorations, as all of ours were taken to Alabama years ago. Miriam's new rule is that we use only items that are already in the house - no purchases other than several strings of lights. We have made lots of white paper snowflakes, foil icicles, and cutouts from cards and boxes. The prettiest result was from some old dried and faded Chinese Lantern flowers that she has slipped over yellow and orange lights - they mute and spread the color, and the light that shines through, highlighting the delicate veins, is just beautiful.

Next week, Miriam is back, then Rick, then Viva, all staying over Christmas and New Year’s. We are all looking forward to it!

Sorry for being away

Two weeks is too long for me to leave my blog in limbo - I am beginning to get worried messages from friends all over the globe, so am shaking myself into action to put your minds at rest and let you know what I have been up to lately.

We had a wonderful week of family get-together that came about by accident, with my older brother from England and his wife, two of his children and his daughter's boyfriend, my younger brother from Alabama, Miriam and her partner and partner's mother, and Eric. Normally three house guests at a time were all that we felt we could handle, but this was the little week that grew and grew, and it turned out to be one of the most satisfying weeks of the year - the first time in so many years that my two brothers and I were together at the same time. At our most crowded we were 12, but everyone pitched in with cooking and cleaning, and we celebrated American Thanksgiving two weeks early with turkey, dressing and all the fixings! I don't know if it was the good fellowship, but I felt very comfortable all week, and it was with some sadness that we said goodbye to all our visitors. Now the house is back to normal, and I am back to my normal up and down days.

My medication has been changed to a long-lasting narcotic painkiller that I only have to take twice daily, so am able to live now without one eye on the clock. I have completed two rounds of my new chemo Caelyx, and we are hoping that it will prove successful in fighting some of my symptoms, such as ascites. Time will tell, but in the meantime I am having weekly taps to belly and thorax that typically take out from 2-3 liters of liquid, and make me feel much easier. I've had my nephrostomy tubes replaced once, and today had a doppler ultra sound test on my left leg to check for possible deep blood clots.

Friends continue to shower me with cards, flowers, good wishes and sweet surprises, so I am feeling very blessed. Autumn is here for sure, and most leaves have fallen from the trees. Winter is around the corner, and it is looking more and more as if we will be spending Christmas here in Toronto - I just don't feel secure enough to absent myself from Toronto for long periods, and a long drive or airline flight is not realistic for me at this time.

Back to NYGH

This past week went by slowly. I was very uncomfortable with a build up of fluid in my chest and abdomen that my oncologist didn't seem to want me to have dealt with (risk of infection, not really enough build up - what did she want? an explosion??). I had to push her to recommend me back to North York Gen Hospital, which she declined to do, saying that perhaps my GP would do this for me. I called my GP, and she, very kindly, did just that. Friday we drove to NYG where I met lots of the staff that I knew from last March, and they tapped the left side of my chest and drew off 600 ccs of the vile liquid. Then they tapped my abdomen high up on the right side and removed another 2.9 liters of liquid that had been compressing my lung and stomach and caused my ribs to ache and all sorts of other discomforts. In less than an hour I had lost another 7-8 pounds of excess liquid, and I went home walking upright and with an appointment for next Friday, in case the ascites returns. I am still on pain killers for other reasons, but at least I have ruled a new tumor out of the swelling on my right side.

Today I have been letting my insides sort out where they should be, and hopefully tomorrow will be a more comfortable day for me. It better be - I need to be a little more active to help my men get the house ready for our family to arrive from Alabama, Montreal, France and England for an early Thanksgiving gathering, US style. There will be 12 of us at our most numerous, and a great week of feasting and fellowship is on order.

Pleural effusion

This past week for me has been very busy, with days of energy and activity (Friday and Saturday when Alabama relatives were visiting), and days of not being able to get out of bed (Sunday and Monday). Frequent bouts of lower bowel pain were becoming more and more unbearable, though were usually under control by the afternoon. Tuesday, Wednesday and today were eaten up with hospital appointments, but these bore good results though we were all exhausted at the end of each day.

I have made contact now with the thrombosis clinic at Toronto General, where they are referring me to Miriam's friend from St Joseph's Hospital in the West End, who weaned me off the super expensive Arixtra ($30 per injection) and on to Warfarin, only to have to stop it in order to go in today for my thoracic tap. These lovely people gave me a carrier bag of my injections that had been donated by a patient who no longer needed them - a three month supply worth $2,700 that should tide me over until I can get back on the Warfarin.

Yesterday I met with the doctor from the Palliative Care Unit at PMH who is referring me to the Community Health Unit (called Symptom Management) and who are local, available 24/7 and who make house calls. This should cut down significantly the number of visits to hospital, where inevitably we seem to spend half a day for each appointment. I was assessed and my pain medication tweaked and I am now in my second day without pain - a first in a long, long while!!

This afternoon I went in for thoracentesis, but after my ultrasound the doctor was not convinced that there was enough ascites build up to warrant tapping. Instead she drew out a pleural effusion under the left lobe of my lungs - a whopping 1.7 liters of liquid that had been compressing my lung, which has left me 4 pounds lighter and hopeful that I will be able to breathe and sleep easier now. Tonight I am already feeling much better, and am taking pleasure in getting my blog up to date.

We have our pumpkin carved (thanks Cousin Jenn - he is beginning to have a serious underbite, so we will have to prop his mouth open with toothpicks) and are stocked with candies for the Trick or Treaters this weekend. Happy Halloween to all!!

Three liters

As you may have noticed, when I feel sick, I do not blog. If I feel sick and things are going on, then JP or Eric will blog in my place. From this you can deduce that since my last blog I have been feeling worse and worse without anything much going on in my life besides hobbling around and staying in bed. By last week I couldn't walk upright, my stomach was compressed so I was eating less and less, and my lungs were compressed so that I had to sleep more and more upright, most probably caused by a collection of fluid in my cavities due to renewed cancer activity. This Monday was my blood testing for possible chemo - all a go for Wednesday, and when I met with Drs M and L they were not happy with my request for immediate centesis, saying that they did not want to put me at the risk of infection by sticking more needles in me. They did agree for me to have an ultrasound the next day, which did indicate some fluid build-up, but from the belly - annoyingly the thorax ultrasound had not been ordered, so no news there.
Wednesday I went in for chemo - just an hour long drip this time, but I was feeling so much worse that we paged Dr L, who came by, listened to my chest and booked me for a thoracentesis for Thursday, much to my relief. I made it through one more mainly sleepless night and this morning drove out with light heart and bursting belly to PMH.
My bubble of joy deflated when they learned that I was taking Warfarin as a blood thinner and told me that a thoracentesis (chest drain) was impossible - I would have to be off Warfarin for five days to get it out of my system before they would put a needle into my chest. The doctor agreed to do a paracentesis (belly drain), sent me for ultrasound, and then drew 3 liters with two different taps. Immediate relief - I am now able to stand up straight, put on my shoes, eat a meal, lie down to sleep, and am 6 pounds lighter and feel quite good to boot. I'll fairly fly up the two flights of stairs to watch the West Wing on DVD tonight!

Colostomy and eating again

Tomorrow will be two weeks since I went into Toronto General emergency with a blocked bowel. We phoned for an ambulance to make sure that I was able to lie down while waiting to be seen after triage, and I was lucky enough to have been diverted into the fast track room. X-ray, CT scan, enemas, but nothing doing - it was total bowel obstruction this time, and it was painful. By Sunday afternoon I had a bed at Princess Margaret and was wheeled over there through the underground tunnel, by way of Mt. Sinai. Because I was vomiting a lot, they inserted a naso-gastric tube to vacuum out my stomach contents, something that helped the nausea overnight. By Monday the pain was overwhelming, and I was on a morphine drip till they released the built up gas in my intestines. I moved into a private room, which made a huge difference to my comfort.

On Tuesday a possible solution was to have a stent inserted in my colon to ease passage of stool, so JP and I were transported by ambulance to St Michael's (Musical Hospitals again...). Unfortunately, it did not work, because the stricture was too close to the rectum, and a stent would have made it impossible for me to sit.

On Thursday we decided that the quickest way for me to be able to start eating again would be for them to perform a colostomy, so I was once again wheeled through the tunnel to TGH for surgery. I went under the knife at 10:00 pm, and woke up several hours later in much pain. It took about an hour for them to get it under control, and then I slept well. TG has an fantastic post op wing, and they took excellent care of me for two days, after which time I was wheeled back to PM for more recovery. I was eating my first solid food in many days on Saturday.

The next few days were spent learning about pain control, walking as much as possible and taking care of my new colostomy. On Wednesday the stoma nurse removed the rods supporting my stoma and helped me change my colostomy bag. I was pronounced good to go and dismissed from hospital. It was a lovely, sunny day to return home to. Now, two days later, and I am impatient for the surgery pain to subside so that I can get back to some semblance of normalcy. It is wonderful to be eating and eliminating again. Just in time for Canadian Thanksgiving - Miriam and Viva arrive tonight, and we will be celebrating with all our children this weekend.

Surgery Success

Good news: a colostomy was performed late Thursday evening, and Anne is recovering nicely. She is already on a liquid diet and the surgeon came by today and said she could probably start on solids tomorrow! She was in excellent spirits on Friday morning and was only a little groggy from the ordeal and the meds. The nurse had her sitting in a chair for lunch, then took us for a walk around the ward after. Anne is now snoozing peacefully after the workout, but another walk is scheduled in the next couple of hours.

We are all looking forward to finally getting some good food in her tomorrow. Thanks to everyone for finger-crossing, good thoughts and support.