My Guide to Getting By…

As I come close to finishing off this blog, there are a few thoughts I wanted to share. Words I’ve tried to live by, ideas that I felt compelled to explore, concepts that I aspired to incorporate into how I act and speak.

Some old friends from my office work days might remember that I could be depended upon to have a motivational “thought of the day” calendar on my desk, anyone was welcome to goof around with the magnetic word tiles I’d arranged on my file cabinet in a quest to inspire, and I had a lending library of motivational books on the shelf. Yes, I was one of those annoying people.

And I’m not yet done with being that annoying person who tries so hard to see the upside of every situation and the recognize the best in every person. 

So here comes my list. I take credit for none of these ideas, I’ve borrowed and revised as I went along to see what worked for me. Sometimes success came along, other times crashing disappointment. Life?

What we put out into the world gets reflected back. If you don’t believe me, spend a day offering every single person you come across a genuine smile and see what happens. It’s magical.

On that note, smiles and a kind word are contagious. Nothing can convince me otherwise.

If your intuition has served you well in the past, keep trusting your gut.

Work hard, be nice. (Quote by Rafe Esquith, Los Angeles teacher featured in the film “Hobart Shakespeareans”). Not only does it cover off karma and The Golden Rule succinctly, it sums up the guiding principles of pretty much every religion quite nicely, doesn’t it?

We all make a difference. We can have a positive influence or a negative one, we each hold the power to shape the lives of others. A tremendous responsibility to be taken seriously.

Listen to children. Amazing insight can be found in the most innocent of observations.

You can choose your family, and define for yourself what that word means to you.

If a doctor or teacher gets high ratings on internet rating sites, you can bet that he or she is also someone very special outside of work too (I had to add that one, I delight in the fact that I’ve yet to be proven wrong on this!)

Walking on eggshells is just impossible. Any relationship that required me to do so is gone for good, I always ended up crashing through.

Giving the benefit of the doubt doesn’t always end well, but it wins out most of the time.

“The first time someone shows you who they are, believe them” Maya Angelou

“Once a word leaves your mouth, you cannot chase it back even with the swiftest horse” Chinese Proverb

There is a big difference between sympathy and empathy, there are times and places for each. The first is closer to pity, the second essential to the human experience.

And to finish, my hardest lesson. I can’t make everyone happy. Goodness knows I tried.

Unconditionally…

I’m fudging the truth when I tell others that I’m recovering from the events of last weekend, when Suzanna twice had to call for emergency help for me. Who am I kidding? I’m not recovering, it’s just further decline and there’s no escaping that reality.

When I had a visit from my doctor two weeks ago she and I had a frank discussion about what the immediate future might look like. The hardest part was sharing my doctor’s thoughts with Suzanna when she arrived home a few hours later. In the oceans of uncertainty surrounding the final stages of this illness, she grasps for the small amounts of definitive information we have. I hide nothing from her, it simply doesn’t work in our relationship to have any secrets between us.

Suzanna immediately made a decision to take a leave of absence from work, choosing to finish out what was left on her schedule so that her employer wouldn’t be left in a bind.

It broke my heart. Not only had Suzanna postponed university for me, she was now giving up the one thing that guaranteed her a respite from what she faces every day here with me.

After the events of this weekend, she felt that she didn’t want to be out of touch for any length of time (at work her phone was accessible only at break time), the idea of me not being able to reach her immediately if I needed help was too much for her.

Thankfully, her employer was compassionate and understanding, ensuring that they would find staff to take on the remaining shifts on her schedule.

The closer we get to the end, the more surreal it seems. The more we feel cheated out of what ought to have been ours to share as mother and daughter. I’m going to allow myself to be boastful, I think I would have made one very loving and kickass fun grandmother!

Suzanna mentioned that when she does go back to work, everyone there will know what will have happened to allow her to be there again. She wondered how she’ll handle the comments from well meaning workmates, the same will apply when she returns to school, she goes back only because she lost her mother.

In our usual fashion, we try to find a smidgen of humour in all the sadness. We joked that she goes back into the world as “half orphan”, but we both know it’s not nearly that simple.

Throughout Suzanna’s life I’ve kidded her that I knew her better than she knew herself. As many parents do, we so intimately know the patterns and habits of our children as to often predict with great accuracy how they will react in a given situation. Even today, there are times that she’ll look at me sideways wondering how I could have known what she was about to say.

Over twenty years together, the tables have turned. Suzanna has come to know me better than I know myself. She has a knack for pinpointing what’s at the root of whatever is eating away at me, often before I figure it out for myself. Something that I’ve come to realize can only happen when you trust completely in someone’s love for you. I find great comfort in thinking that that my daughter has trusted me enough to let me know who she is, and that her unconditional love for me has allowed me to be human too.

One Thing That’s Kept Me Busy…

Many surprises and opportunities have fallen into my lap over the last six months, it’s hard to imagine that so much could happen within the confines of the four walls of my bedroom. Outside of telling close friends, I’d decided initially that I was going to keep fairly quiet about two of the projects until they were completed. As things are going, my chances of being around at the time of completion are getting slimmer and I’m being graciously guided as to what information I can share while I’m still here to tell you myself. Sounds a little mysterious, doesn’t it?

Followers of my blog might remember that I had a pacemaker implanted about ten years ago. I’d been diagnosed at the time with vasovagal syncope, sudden and significant drops in my heart rate were causing me great discomfort often resulting in me ending up on the floor in a faint, or near faint. Injuries were a common occurrence, sharp corners on furniture had a way of leaping into my path. This condition was preventing me from leading a normal life; I couldn’t drive, work or take care of my daughter in the ways I would have hoped.

Thankfully the pacemaker returned me to a fairly normal life for a few years, until I was diagnosed with Erdheim-Chester Disease in 2009. If you’ve been following the blog you’ll have a fairly good idea how things progressed from there, cardiac issues continuing to be of major concern.

When I signed my Do Not Resuscitate order early last year, I had to give pause as to how my pacemaker would be handled. As I mentioned a few months ago, I’d already decided that I wouldn’t have the pacemaker replaced when the battery died.

Two concerns quickly came to mind. The first, if my daily health issues were already so challenging, what would they be like with a non-functional pacemaker on top of that? Knowing my triggers of ten years ago, even getting out of bed to go the bathroom would be out of the question with an expired pacemaker battery. I also had to consider that ten years ago I was in otherwise better health, a much sturdier state than I’m in today.

The other concern was whether the pacemaker is keeping me alive artificially. Might I have already died if it hadn’t been bringing my heart rate back up again after every crash? The data downloaded from my pacemaker over the last ten years tells us that I average at least forty major drops a day.

A year and a half ago, I set out to have my questions answered in preparation for a time that might come when it could appear that the pacemaker was the only thing keeping me alive. What rights did I have as the patient to have the pacemaker turned off?

The path has been a complicated one. The charter of rights of Ontario clearly states that I have the right to have the pacemaker turned off, in the same way respiration or dialysis treatment can be refused. On paper a clear option, not so clear in practice.

About six months ago I was speaking at length with a member of the Ontario Dying With Dignity association about my questions and concerns, when she asked if I might consider speaking with a representative of the CBC whose team was producing a documentary on end of life issues facing Canadians.

I did speak with the CBC and was asked if I would consider participating in the documentary, and I agreed with one stipulation. My daughter Suzanna had to be fully supportive of my involvement, it would be another four weeks before she was finished her exams and I didn’t want to raise the idea of my participation until she had cleared her plate.

The documentary is scheduled to air sometime in November, which will tell you that Suzanna did indeed give her blessing to the project.

There a few points I’d like to raise. First, the CBC team has been absolutely wonderful to work with. Not only have they been very appreciative about how much energy this project has taken out of me and make every effort to lessen any burden on me, they’ve been at every point very respectful and compassionate towards me and Suzanna.

I’m going to use the term “dying a gentle death” as a way to describe what I’ve been trying to achieve for the end to my own story. Each of us will have our own perspective and feelings on the issues of when modern medicines and medical procedures ought to be used to try to extend life, and we will also will have our own thoughts on when it’s appropriate not to intervene.

My decision to participate in the documentary comes from a desire to allow other Canadians a chance to “walk in my shoes”. You may find yourself agreeing or disagreeing on some of the points raised, to that you’re perfectly entitled. What I do ask is that if you feel compelled to speak out on whatever your position might be, that your comments please be directed to those in our government who can speak on your behalf.

Suzanna and I are trying to do what’s best for the two of us. Despite going public with our story, ultimately for us this is about a mother and daughter who love each very much, neither of us wanting the other to suffer beyond what we feel we can handle.

A side note: it took me a few weeks to find the words and the courage to share this post. Two emergency calls for help this past weekend had me and Suzanna again revaluating time lines and decisions, encouraging me to share this information sooner than I might otherwise have done so. It was my wish that you hear about the documentary from me rather than recognize my name spoken on your TV one evening a couple of months from now. I’m grateful to my CBC team for giving their nod to sharing this news before the piece is complete.

Putting Minds At Ease…

I’m overwhelmed by the very thoughtful, terribly kind and beautiful supportive notes being sent to me here on the blog and privately. I haven’t been able to give any of them the proper reply that each deserves, please know that I read and cherish each one. At a time that can be isolating and frightening, I do not feel alone. Thank you for giving me this gift.

I don’t mean to be alarmist, but it has to said that although I have a few specific subjects that I’d like to write about while I’m still here it’s not guaranteed that I’ll get to them. Little in this life is certain, this is a lesson I keep being taught over and over again.

There are two questions about Suzanna that get raised over and over again, and I’d like to answer them now so that I can set some minds at ease.

Although there is not enough known yet about Erdheim-Chester Disease to be 100% accurate in my answer, there is no evidence to suggest that Suzanna or her future children are at risk for acquiring ECD. None of the diagnosed patients scattered around the globe have been found to be even remotely related to other ECD patients. This knowledge helps me sleep at night.

The second question I’m often delicately asked is if Suzanna will be okay financially after I’ve passed. Bluntly, yes. My life insurance coverage will allow her to complete the university education she wants and deserves.

I feel better putting that out on the table, I hope you do too.

Finishing Off the Bar of Soap…

A few years ago, the final Christmas spent with my ex, my husband gave me a gift that might sound a bit strange. Coloured tissue tied with a string, inside were several dried up slivers of soap and a few nearly empty tubes of toothpaste.

My thriftiness had been a running joke in the household, the gift at the time did make me laugh. A very short lived giggle, the evening spilled over with awkwardness knowing that my husband had chosen to leave the marriage and would within weeks be moving out.

Not to say that I don’t appreciate high quality goods and services and accept that they’re priced accordingly, the point that was being reiterated  with the gift was that I didn’t care for wastage of whatever item good money had been spent on. I admit that I could be a nag about food being eaten up before it spoiled, or getting annoyed at finding toothpaste in the bathroom garbage that had more than a few good squeezes left in the tube, or soap being replaced while the current bar still had a few days of usefulness left in it.

This thriftiness didn’t grow out of the period when I’d left home as a teen and ate ramen noodles meal after meal out of necessity, it had come much earlier from the lessons learned from a mother and her sisters who’d been young girls in Germany during World War II.  Food and provisions at times was scarce, and no matter how poor the condition the item was used or eaten.

The experiences of one generation passed on to become habits of the next.

I smile when my daughter also tries to get the very last bit of toothpaste out of the tube, when I go into the shower and a usable sliver of soap waits for me to finish it off. When she reminds me that there’s food in the fridge that needs eating up.

My need to finish things off is making life a bit complicated. I can’t clean up all the loose ends that I’d like to before I go, as much as I’m trying.

Including this blog. It’s been gently suggested by a few friends that I write my last entry in advance, to be posted by Suzanna after my passing. No matter how hard I try, I just can’t do it for the tears that flow. If it hasn’t yet come across in the last few years of writing this blog how grateful I am for the blessings in my life, I haven’t done a very good job and wouldn’t expect to be able to sum it up in just one post.

My plan is to wrap the blog up over the next few weeks. It’s time. There are some things I’d like to share before I stop writing here, some things that might surprise, delight, or sadden you. I need to tie up this loose end, to give you an ending to the story as best I can. Suzanna has promised that news that I can’t share myself will be posted; it saddens me when I read a blog written by someone who’s terminally ill and it ends suddenly with no news of what happened to the individual I grew to care about.

I can’t do that to the many of you who’ve faithfully followed my blog over the last years. We won’t leave you without the final chapter.

Breaking Bad-ly, Take Two…

An indication that I’m overly tired these days, I strayed away from a point I’d intended to make in the last post. One about the Breaking Bad title reference that probably came to mind for most of you.

Suzanna and I have thoroughly enjoyed watching the TV series, and are eager to watch each new episode of the final season as it becomes available on iTunes (thank you for the birthday present K!) Three weeks to go if I count correctly?

If so many people hadn’t been raving about Breaking Bad, I probably wouldn’t have invested time in watching every episode of the previous seasons on Netflix over the six months. I’m a queasy one, and the first episode with the bathtub scene came close to being the one and only that I watched. It was Suzanna who insisted (she’d watched the first few seasons while away at school) that the plotline was worth sticking with and I’ve not been disappointed. However, she does need to tell me when it’s okay to watch again after I’ve taken cover behind my hands when something gory pops up on screen.

I need to know how it ends. You’d think with so much going on here in our own home I’d have priorities other than wondering about Walter White’s destiny (and I do, but some of them I’d rather not be dealing with), but I really, really hope that I get to see the ending next month. And not just this show, I wish that TV execs would give special privileges to fans who might not be around to see the next season. I’m really, really good at keeping secrets!

Other shows that I’d love to see to the end are Mad Men, House of Cards, Nurse Jackie, Orange is the New Black, Homeland, The Newsroom and I can’t forget Downton Abbey. I’m sure I’m forgetting a few, friends have made some wonderful recommendations over the last months to help keep my mind occupied.

There’s one series that I’ve very grateful to have watched to the end, the subject of a few blog posts – The Big C. The show came up in conversation tonight with a dear friend, she’s part way through Season Two and I was careful not to let any spoilers slip. I really am good at keeping secrets I tell you!

The Big C storyline comes back to me often, in credit to the team that brought the show together. They did an incredible job of portraying the realities of facing one’s own death, and I’d like to find a way to let them know of the positive influence the show has had on how I choose to handle the challenges that come at me.

Call it a bucket list wish if you like, but I’m going to put this request out there and see what happens. I’d very much like to get a personal note of thanks out to the creative team behind the show, particularly Darlene Hunt and Laura Linney.

I’m not looking for a reply or favour of any sort, I’d just like to know that my thanks were directed to them personally rather than ending up in a stack of mail at an agent’s or manager’s office.

Six degrees of separation, hopefully far fewer. I’ve been reminded over the last few years that I know people, who know people, who know people,  and in this way some unexpected connections, opportunities and assistance have come my way. Can you help connect any dots on this one?

Breaking Bad-ly…

Even with knowing that the end is getting closer, there are still surprises to be had. The final half hour of my case conference yesterday brought a few I could have done without.

In attendance were my doctor, lead nurse, case manager and Suzanna. And of course me, reclining on the bed wedge like a lady of leisure. Except I wasn’t playing the part very well I’m afraid. As always in great pain, my effort to breathe was hindering communication. Words needed to be chosen carefully, and the listeners needed to be patient in waiting for me to catch enough air to get my thoughts out.

The bulk of the meeting was spent reviewing logistics in keeping me here at home as long as possible. More equipment, more meds, setting baselines for when it’s time to go elsewhere. Details on the elsewhere part I’ll save for another post, we’re all still hoping that I’ll have a peaceful passing in my sleep with my daughter at my side. Maybe not what everyone would be comfortable with, but Suzanna and I both hope that this is the way it ends.

An hour into the meeting Suzanna excused herself for an important matter (maybe I can twist her arm into writing about it sometime),  I’m very proud of the strength that she has within her to share her limited energy with someone else who also needs her right now.

After she left, the conversation took an interesting turn. I suppose that the others felt more comfortable with Suzanna being absent when they told me how much my physical appearance had changed since each had seen me last. The observations were shared gently, and with concern not to offend – but I did need to hear those truths. For so long, the outside didn’t match the way I felt on the inside – it was validation for me that is not just a bad nightmare (as hard as Suz and I often wish it were).

The case manager then went on her way, leaving my doctor and nurse to do a quick examination. Without even touching me, the first observation is that my body is drawing energy to my core with very pale and cold extremities.

My doctor listened to my heart, and confirmed what I already knew. The heart beat was weak and irregular, pulse very slow. It’s one thing to notice when a heart beat is unusually strong, yet there’s an odd awareness, like an echo in an empty room, of when there’s an absence of a normal heart rhythm.

Feeling around my abdomen to check my organs, my doctor came across a few surprises that could indicate some upcoming challenges, masses that weren’t expected. Not unexpected with Erdheim-Chester, yet the locations a bit of surprise for me. It’s been well over a year since my last CT scan so we can’t really be sure of the sizes, but the fact that they could be felt through my skin alarmed me a bit.

We both however had quite a shock when she was palpating ever so gently  just above my left kidney, and a rib gave way. I wouldn’t say it hurt, it sent a shiver up my spine like listening to fingernails dragged against a chalkboard.

Tentatively checking other ribs, it would appear that at least a few have broken or softened due to bone tumours. As had my collarbone (which I’d already known has been significantly infiltrated since my pre-radiation bone scan last summer).

Then came the words that as I think back feel all jumbled and impossible – no more hugs. If a rib could give way with so light a touch, there’s a strong likelihood that even a gentle hug could could break more bones.

I’m a hugger with my loved ones. To excess at times I’ll admit. There are times when my daughter would be leaving to go back to school after a visit, I’d hug her as if my life depended on how much love I could transfer to her in a squeeze. Coming home was the same, I wanted to make up for the hugs we’d missed while she was away.

When my daughter was small, bedtime was accompanied by a “hug, kiss and a squeeeeeeeze”! My way to not only justify a second hug, but to prolong it for as long as that last breath of air would allow.

I’m going to miss the wonderful hugs that my friends offer me, I’ve always gotten great comfort from them. It’s going to hurt to tell them that I can no longer participate in our usual ritual when greeting each other or saying goodbye.

As for my daughter, I can’t even go there. We’ll figure something out to maintain the physical contact that is so important to our relationship, she deserves as many hugs from her mom as she could possibly want – the delivery however going forward might look a little comical to the outside observer.

Although I expected much of the territory that we covered in yesterday’s meeting, I will still left feeling blindsided.  Another ledge from which my fingers have lost their grip. How many more ways can a body and soul fracture until they become unrecognizable from a pile of shards?

As Another Page Turns…

It’s been one very long year.

Fifty two weeks ago, I moved into the apartment we’re living in now. It seems like a lifetime ago, yet the details surrounding that weekend are still fresh, at times somewhat raw.

Suzanna and I had lived for the previous three months with dear friends who had given us a wonderful home when we had nowhere else to go.

I was going to try to live as best I could independently, Suzanna was heading back to university. We had no idea that although I was struggling to move about (the one thing I wasn’t going to miss about our friends’ home was the staircase!), we didn’t anticipate how quickly my health would decline. By the end of December I was needing a wheelchair, on oxygen, and very close to being confined to bed due to weakness and pain.

Since last year I’ve lost my ability to walk more than a few steps at a time, can’t prepare food for myself (even swallowing is not always successful) and often need help with dressing. A few weeks ago Suzanna fashioned a way for me to pull myself out of bed with a belt, unable to lift myself up without assistance anymore.

There is so much that I’ve lost in this last year, a bitter pill to swallow for someone who has prided herself on being independent, resourceful and responsible. A lifetime of being the person who could be relied upon to come through in situations thick and thin.

It’s at times humiliating to need this degree of assistance, and to be needing more as each week goes by. This week I have a meeting (as has been the case for the last six months, here in my bedroom) with my doctor, case manager, lead nurse and my daughter as we try to figure out what’s best for both me and Suzanna. We have some disconcerting territory to cover, decisions to be reached over recent developments that we can no longer pretend aren’t as serious as they truly are.

That’s all more than enough reason for this past year to feel like it’s gone by very slowly.

But then, I look at other reasons for this year to have felt so long. Friendships lit, rekindled and nurtured. There are valued friends who have been a part of my life for many years, yet also new friends who came into our lives just in this past year – and in the best of ways feel like they’ve been around forever.

I’ve had the most incredible past four months with my daughter who paused her education to come home to look after me. It’s been easy to forget that she lived away from home for sixteen months in the last two years, our relationship certainly didn’t suffer for the miles that separated us. Despite the sadness that sits on us with her not returning to university with her friends this week, she assures me that she not for a second regrets her decision.

We know that this comes to an end, and we pack as much love as we possible can in this time together. It’s an unspoken commitment between us, squeezing in what we can of what the next thirty or forty more years ought to have been allowed to us. Life really sucks right now. We acknowledge it now and again, and then move on to appreciating that for now we still have this time together.

The hardest year of my life has also turned out to be the sweetest in so many ways. One very long year not because of the hardships, but because of just  how much care and love has been squeezed into it. I’m one very lucky dame.

Blogging Forward…

I wasn’t sure what to expect when I started writing this blog over four years ago. Putting one’s personal details, thoughts and opinions out there has its risks, but as it turns out, also has had many delightful outcomes. The blog has brought me new friends, a great deal of support and many smiles along the way. For these positive outcomes, I’m very grateful.

There was also a downside to going public. I was dealing with a situation with at least one reader whose questionable intentions were distressing to me (to the point that I seriously considered no longer writing this blog).

The negative consequences were keeping me from being more forthright on the blog, I wasn’t happy that details of my declining health and personal circumstances were being perused for reasons other than concern for my welfare of that of my daughter, or for education on Erdheim-Chester Disease. Some good friends know what I’m referring to, it’s assumed that it’s a situation that won’t change no matter what I write here. I’ve addressed it privately, but don’t expect anything to change. I can’t keep anybody from visiting this blog unless I password protect it, but if as a reader you’re here only to pass on information to a party who has a financial interest in the timing my demise – well, that’s just really sad.

I want to thank two members of my palliative team in particular who, this this week reminded me of why I started this blog in the first place. It was to keep my friends informed of my health without repeating the same information over and over again – and over the last few months that’s exactly what I found myself doing again while I went into a “protective” mode. Many readers have also let me know that the blog has been helpful in dealing with their own serious illness, or that of a loved one. I’m honoured to know that my words might have brought comfort to others along the way.

So here’s the scoop. I’m not doing well. A few weeks ago I was diagnosed with congestive heart failure, causing significant additional breathing problems not eased by increasing the oxygen. Fluid has been building up in various areas of my body (lying on my back almost 100% of the time might give you an idea as to how gravity has been playing its part).

Daily medication “drains” the fluid for a few hours each morning. Not to be indelicate, but if you have an idea of the pain and discomfort involved for me in getting up to go to the bathroom every few hours – you can multiply it significantly when I require usually more than ten or fifteen bathroom visits in the space of two hours. By mid-afternoon I’m in so much pain that it wouldn’t take more than mere suggestion to agree to having my legs amputated.

The PSW visits are the worst. Hobbling around the corner to lie down while she changes the bed sheets are agony. One might suggest instead sitting up nearby for few minutes in a chair, but that’s even worse. Sitting up has me shaking so badly from weakness and pain that I end up near tears.

With my palliative team we’ve come to the decision that the pain management protocol was I going to try in hospital (mentioned in a post a month or so ago) is no longer in the cards, I’m simply too weak to travel there to give it a try. It was risky to begin with, but my declining health has further shut the door to that experiment.

We’ve declined the food delivery service, unfortunately my appetite and ability to swallow have both significantly diminished. The volunteers were so very kind in trying to prepare meals that might appeal to me, unfortunately little does these days. It’s easier to let Suzanna shop for herself, she’s a great cook and I get the benefit of the wonderful aromas.

The tables have turned on my sleeping habits as well. For the longest time it was standard to only get four or five hours of sleep, now I’m asleep far more than I’m awake in each twenty four hour period. The upside is that I have fewer hours now that I need to fill with mental stimulation, that was becoming quite a challenge with bone pain often succeeding at thwarting my attempts at mindful distraction.

This post isn’t meant to make anyone feel sorry for me, to me it’s righting a situation that has been out of whack for some months. This is what my days are like, it was time to stop pretending that it’s one wondrous and humour filled day after the next.

It was time to get back to representing things as they are. With that comes a hope that there is understanding as to why I’ve become quite lousy at returning emails and phone calls, why I’ve been cancelling a lot of visits lately. I’m feeling nothing less than miserable much of the time, and we’re now faced with tough decisions as to where we go from here.

Despite any negativity, it doesn’t for one second change the positive aspects that writing this blog for over four years has brought to me. Thank you for the support, concern and well wishes. I hold them dear.