The Men Who Restore My Faith in Men

Note – the bulk of this post was originally written about about two months ago, just before my Word files became inaccessible due to my laptop challenges. Events of this week launched me into a determined effort to find what I’d drafted. I suppose I could have rewritten it, yet I didn’t want to miss the essence of what I was feeling the first time I sat down to write it. I apologize for the length, it felt like I needed to get this all out of me tonight.

It’s no secret to people who are close to me that there have been men in my life who have treated me less than honourably. Some earlier in my life, others more recently.

Although there are those who stuck out as princes among men and treat me with great respect, kindness and love, I had over the last year and a half lost some faith in the opposite sex.

Yet there are men who give me reason to rethink this position.

Yesterday afternoon I received a call from the volunteer driver who had taken me to my morning radiation appointment. On the drive home with another patient I’d told the story I’d posted some weeks ago about listening in the oncologist’s waiting room to the older ladies discussing tooting on the bus (if you missed it, you might get a giggle out of it if you go back to my August 2^nd post).  Our driver said that I should write a story like that down, and I replied that I had indeed done so. I then shared details on how to access my blog and we then said our goodbyes when I was dropped off.

This call was quite emotional. I won’t share all the touching details of what he had to say, but he’d told me that he’d spent an hour reading my blog and wanted me to know that I could call upon him if I needed any assistance – beyond his role as volunteer driver for the Cancer Society.

Let me clear up something quickly fearing that any of you are getting the wrong idea. Mr. B spoke lovingly about his family (including his wife) on the drive to the hospital. This is nothing other than a decent man wanting to do something to make my difficult situation easier if he could.

And I thank the heavens above that this is not an isolated case. More and more I have men stepping forward with genuine offers of help. And not just offers, actions follow the kind words.

Neighbours who helped with household chores before my daughter and I had to leave the old house, men who helped with the yard sale, men who welcomed me and my daughter into their home when we had nowhere else to go, others who accompanied their partners who were visiting me and made themselves useful while they were there.

Men who use their connections to bypass the roadblocks that I run into on a regular basis.  Men who call, send emails and Facebook messages to check on how I’m doing and ask how they can help. Men who tell me that they will never understand how another man could put his wife through what I've experienced, and they apologize on behalf of the gender. That's a concept I don't quite get my head around, I can't imagine a woman apologizing on behalf of all others. But thank you all the same, it's touching and raw at the same time.

Professionals in my life who go well above and beyond the call of duty to let me know that I matter (let me specifically note my doctors and lawyers, I know that I’ve meant more than an OHIP invoice or a billable hour).

Men who didn’t blindly believe what they were hearing, but knew that there would be two sides of the story of what led to the end of my marriage. Those men especially earned my respect for acting on their own feelings when the story didn’t make sense based on what they already knew of me.

There is nothing romantic in any of these connections whatsoever – it`s just decent men being who they are. I’m immensely relieved to know that there are still plenty of good men out there, I trust that the women in their lives know what gems they’re blessed to have around to love and be loved by.

And a huge thanks to those of you (of both sexes!) who have been checking in on my progress with radiation, now nearing the end of the first week. Today it got a bit rough, it’s not easy being here on my own. I wish more than anything that I had a loved one here tonight to warm up some soup for me, rub my head (no pain medication can beat that for soothing me), holding me when an excruciating bout of pain hits. I don’t dare move beyond the bed right now. I wouldn’t in a million years wish this experience upon anyone, nobody deserves this. But bless those who want to make things better for me.

And back to now. The flood of support continues from both sexes, but today I want to continue with thanking the men in my life. 

B drove me to the appointment that I had a few weeks back with the oncologist; the one where we called off any further radiation due to the lack of success of the first round. When I went to find him in the lobby after my appointment I was visibly upset and he asked if there was anything he could do. At that moment I felt what seemed indelibly stained with sadness and loneliness. One of my toughest appointments ever and I’d had to go through it alone.

There were other passengers in the car on the ride home, for the most part I stared out the side window, tears welling up but not making a sound. I was dropped off in front of the building, after our goodbyes I made my way to the elevator. All I desired at that moment was to make it upstairs and into my apartment before I fell apart. I didn't quite manage that, but nobody was around to see the sobs seeping their way out of me. The door locked behind me, I fell into a corner where I must have stayed for the next hour. Sobs that I’d held back for months swept out of me. And then it was time to pull myself together again and muster whatever post-radiation energy I could muster to unpack yet another box.

A few days ago I received an envelope in the mail, my name and address handwritten. I didn't recognize the last name at first, but as I read the enclosed note it quickly came  to me that this note was from my volunteer who’d driven me to and from that difficult visit with the oncologist. I won’t go into details, but I tell you that it was a spiritual gift that lifted my heart.

This led to he and I sharing an hour with others this morning (and there are a couple of coincidences in there too), and then I was invited back to his home to meet his wife. It was a lovely visit, they've been married fifty three years and have lots of stories to tell of their life together. And it sounds like I’ll have a chance to hear more in the future; I’m delighted by that prospect.

I have a long list to thank for restoring my faith in men. I suspect you gentlemen know who you are. 

Deciding...

Thank you to the worried readers who sent notes of concern when it seemed that I had gone AWOL the last week and a half. I have my computer to thank for that. It's hobbled along for the last six months well enough that I could still write blog posts (but do precious little else on it), but last week it turned on me. So for the third or fourth time since the spring I brought it back to factory state and re-installed all my programs; not  sure how long it'll stay up this time. It's a mess of cables and wires to get even a blog post out of it. In addition to that, my iPad has hit Apple's wall of planned obsolescence, if I'm lucky apps will stay open more than a minute before crashing (that will explain my very brief emails of late!) Quite a long way down from working for a tech company ten years ago and having had all the latest tech gadgets at my disposal! 

In my last post I'd mentioned that I had a hospital appointment last Tuesday back with my care team at Toronto Western, I wasn't quite sure what I was going to tell them about the failure to respond to the radiation. In truth, I had decided some time ago but I had to get my head around it.

Radiation is to be the last experimental treatment I'll be trying. I'm done getting my hopes up, experiencing the side effects and dealing with the disappointment when the treatments haven't worked. It's time to get off the wild roller coaster. No more bone scans; there is no need to know where tumours have spread to - I recognize the pain and it doesn't help me emotionally or otherwise to get confirmation of location. Diagnostic testing, outside of regular blood work, pretty much disappears. Far fewer trips to the hospitals. To me, in some ways this sounds like a better quality of life. Pain management continues to be a struggle, however I choose to never again be the first ECD patient to try a new approach to the disease. It doesn't mean I won't sit up and listen if there's a positive new development in research, but I'm not putting myself through this experimental process anymore.

My doctor went through a few scenarios to ensure that I truly understood my decision, along with the repercussions of having signed my "Do Not Resuscitate" order months ago. I felt that we were most definitely  on the same page; it's time to let this take its course.

Some readers may disagree with my decision and you may of course do so. What matters to me is that my daughter and I are at peace with this, and we are as best as I think we can be. It's been a surprisingly freeing experience. 

My doctor at that appointment asked me how I felt about being a palliative patient, a question I'd never been asked before. I told him I'd prefer if it was heading in the other direction, but I can accept that it isn't.

That night I played the unique sentence game. "I'm washing sesame seed oil off the bottom of the cashew nut jar whilst thinking about what the label of palliative patient means to me". Top that one.

I continued to think about my decision over the coming days quite intently. Not once have I thought I'd made the wrong choice; it was an internal thought process about what the journey ahead might look like.

The day after my appointment I received a rather surprising phone call from the organization that provides my volunteer visitors/helpers (let me add that they're four incredibly giving women whom I'm grateful to have the chance to get to know better as we go along. All quite different in personality, the coordinator has done a fabulous job of matching me to these new friends). Might I consider speaking to the group who are currently undergoing a ten week course on palliative care about what a person in my situation might want or need from a volunteer? Quite a coincidence, but then again I really don't believe in those. 

I'm immensely honoured. To think that a group of people who've made a conscious decision to help, and spend time with palliative patients might be drawn closer to this goal - or perhaps pushed away, by what I would have to say is a big responsibility. 

There's more than a hint of irony to this. A year ago it was demanded of me to find a support group to help me be a better caregiver to my caregiver. You might need to read that last sentence twice, I had to make sure I wrote it clearly and accurately.To the point that I was marched off to the local cancer support centre to find said support group. I was being told that I had to be a better patient by the person who'd tell anyone up until shortly before that day that it was easy was to forget that I was ill because of my optimism and positive attitude (and a most defiant - and certainly aggravating at times to my family - mission to doing things for myself whenever I could). A huge point was being missed; I didn't want to be defined as a patient. I wanted to be a wife and mother to the two people who mattered most in my life. It was, and still is, me in here. A person who still wants to do what she can despite growing challenges, to love and be loved and continue to grow intellectually, spiritually and emotionally. And I suspect many others finding themselves in this position would offer the same sentiment.

And here I am now in a position of participating in the process of teaching volunteers how to support we palliative patients. Irony indeed.

Deciding to Not Decide

I've spent the last few hours sorting paperwork on my bed. When I had to pack up the house last spring, the contents of the filing cabinet were hastily placed in boxes for future sorting. I anticipated that without being able to work I'd have plenty of time to get the job done when we had a new place to live.

It hasn't quite worked out that way yet. Six weeks later I'm still unpacking. Mostly because I move as slowly as molasses these days, and secondly because I've run out of space to store things. However tonight I wanted to make a small dent in the piles and boxes of files.

It's been an evening of mixed emotions. I've come across my daughter's old report cards, cards and letters that she's written to me over the many years (it made my heart smile to see her earliest attempts at handwriting). Cards that I wish I hadn't have come across tonight (how does someone say that you made him the happiest man alive and looking forward to many more Valentine's Days together, and then less than three months later say that he couldn't stand being with me one minute longer and has felt that way for years? That one goes to the top of the heap for a bonfire...)

I also came across old performance evaluations from my tech world days. I'll keep one for my daughter to look at years from now so that she can be reminded that once upon a time I wasn't this shell of my former self. Back then my nickname at the office was "The Energizer Bunny" (I suppose that's still true to some degree, I am battery operated after all!)

What struck me was the commentary from various superiors, often noting my ability to stay calm, focused and decisive in challenging situations.

A sharp contrast to what I'm feeling this evening, at least as far as decision making is  concerned. A thoughtful friend took me out to run two errands today. One to the post office box, the other to Sears to get socks. I'd be ashamed to show you the bottoms of my feet the last few months, most of my socks are nearing holes in the bottom if they're not already there. No socks on sale today, but no way that I'm going near the place again on a weekend before Christmas. Sheer madness and very long line-ups. It wouldn't be the first time that I've found what I'm looking for, stood in line but had to abandon my intended purchase because I just couldn't stand anymore.Yes I know, suck it up Sandy and just get the darn wheelchair...

This small amount of walking has had serious repercussions tonight. If you didn't know where my knees belonged on my legs you'd be hard pressed to locate them with the swelling being so extreme. The weird colouration is spreading to the front of my legs, and the pain is overwhelming. A pain pill that the average adult should take only two of per day, I'm up to one every two hours day and night. What complicates things is trying to keep them down, they're strong anti-inflammatories that do a number on my stomach and tonight it's a heck of a battle to have them stay put. Note to self - ask medical team on Tuesday if there's an alternate delivery system, even if I have to inject like a heroin addict, I'm on board.

For someone who's normally good at making decisions, I can't make up my mind whether to head to the hospital or not. Do I keep pushing through the pain? Or go through the frustration of going to the local hospital only to be sent home again because they've never heard of Erdheim Chester and don't know what to do with me? Why am I writing a blog post right now instead? (the answer to that is simple. I just don't know what else to do with myself right now, and this is the best distraction I can come up with. And it helps me to feel less alone knowing you're out there reading this).

Time for another pain pill. Quite simply put, this is wretched.

Hadn't Seen That Before!

Never a good thing when your doctor tells you that.

This morning he'd just finished telling me that how disappointed he was that the radiation didn't work. That sadly the Cancer hospital had no other options to offer me; their research hadn't come up with anything that looked like it was viable for reducing my bone pain. I was being discharged as a patient there and would be sent back to the Toronto Western team for the "balance of my care".

Palliative speak. I've more or less become used to it, but today it hit especially hard. Although I know full well that the radiation didn't work, there was a part of me that was hoping that news would come today that that a different plan of attack might well offer me some relief.

We reviewed the bone scan results one last time. From here on in, it really doesn't matter where the tumours are and where they spread to - the plan of methodically irradiating them one by one for pain relief has been shot to hell. I'm not entirely sure if I care to have any more bone scans. I know where the tumours are, it's an all too familiar intense burn that feels like hot pokers have replaced my bones. And it's getting harder to bear every day, and I'll recognize the feeling when it appears elsewhere.

As we were wrapping up I was reminded that I was to show him the radiation burns. And that's when the look of astonishment crossed his face. "Sandy, I've not seen that before. It's got to be from the radiation given the location, but that shouldn't have happened". I guess nobody else has the fun of having baby giraffe legs.

The ride home with the Cancer Society volunteer driver and other patients was excruciating. I can say I'm pretty sure that I've never felt lonelier or more alone than I have today. I needed someone to hold me and tell me that it's all going to be okay. Even though we'd both know it isn't. Someone to hold my hand, wipe away my tears as I allow myself to cry out the pain, frustration and fear.

I'm not afraid of dying, I'm afraid of much more of this ahead of me. Knowing that this only gets worse.

From time to time it happens that someone will ask me about what symptoms led to my diagnosis. Once in a while, the person will have themselves convinced that they too must have Erdheim-Chester because they have leg pain and/or cardiac issues (and this happened again this week). Or I'm told that that's exactly what their Aunt Sally had, but she's all better now. Sometimes they ask for my doctor's name so they can speak with them to get confirmation that they too have ECD.

I try to be polite and suggest that if they're feeling pain or discomfort they most certainly should have it checked out. But I'm frustrated when others seem to be hoping that they've found the answer in an ECD diagnosis.

On the inside, I feel like screaming that suggesting that they have a very rare illness such as ECD is the very last thing they might want to think about. Pray, hope, wish (whatever works for them) that if it is something serious - that's it's something far more common. An illness that comes with a successful treatment protocol (or a protocol period), drug funding, answers, survival rates that are at least a touch more predictable.

I'm not being selfish wanting to have ECD all to myself, or dismissing the pain of others. It's me praying that others don't have to go through something like this where you just don't know what's going to hit next.

Trust me on this. You don't want to be the patient who's been told "We haven't seen that before". It's not a good place to be.

Just so you all know I've not completely lost my sense of humour today, I'll share an addendum to last night's post about the SAP setting on the TV. In trying to distract myself from the pain last night I was checking out what other buttons on my TV remote did. Lo and behold, there was one that took the picture from being all stretched out and distorted to being normal proportions again! The "format" button saved the day, I had on this one too been blaming the antenna. The setting had been on Zoom, when 4:3 makes people normally proportioned again...

You have permission to laugh at me on this one too, but for those friends who worked with me for many years in the tech arena (where I was either programming myself, or leading a team of techies) you're allowed to call me, laugh as hard as you like without saying a word and then hang up. I'll be laughing too.

In Case There Was Any Doubt...

You have permission to laugh at me. Uproariously.

I only get a few channels on the TV, and haven't watched all that much since moving in....but I thought that during the summer while we were between homes that descriptive audio (SAP) had been added to all the sitcoms I've watched as some sort of of hot new trend (which I found completely annoying).

It appears that I accidentally hit the SAP button when I was setting up the TV/antenna six weeks ago. It was only tonight that I realized that it was the same woman's voice on every show...

Yup, I've turned into a tech dummy. You know who not to call when your VCR is blinking 12:00!

Verbal Acrobatics...

3:30 am this morning I was still wide awake. Not the neighbours being noisy this time, it was that flippin' bone pain of mine. The sleeping pill I'd taken over four hours earlier was obviously having no effect, nor had that meditation CDs that I quietly (because I have no intention of starting a showdown with my neighbours) started playing when I realized this was going to be one of those tough nights. About 1:30 am I downed an extra pain pill - about four hours ahead of schedule but it's just one of those choices I have to sometimes make. Another one two hours later, no wonder my stomach is rebelling madly against me the last few weeks!

When friends and members of my medical team ask me how I deal with the middle of the night "creepies" (they offer a variety of monikers for the period of time when one should hope to be sleeping but aren't) I tell them I don't really get too bent out of shape about it. Being alone in the apartment doesn't help, but somehow I have to get through it.

Certainly I'd really rather do without the pain, it's escalating beyond pre-radiation levels and it's frustrating when the pain meds I'm allowed to take aren't making much of a dent (I'm allergic to the opioid family of pain relievers, what I can take I liken to trying to deal with the pain of a broken limb with baby aspirin).

I've been studying on the internet  about neuroscience and pain. Had I realized many years ago how fascinated I was by the science of the brain I would have taken a different path in university rather than liberal arts. My daughter has changed her major at school to Molecular Biology and Genetics and I hungrily grill her to share what she's learned each week.

It would seem that I'm on the right track for trying to diminish my pain when pain meds aren't doing the trick. You might laugh, and of course you may - that's the intent of this exercise for myself.

When I was a child, I used to play a game whereby I would try to come up with a sentence that likely had never been said by anyone before in any language. For instance, "my pet giraffe's grandmother sneezed on my pinwheel cookie whilst I was watching the flea circus perform during a raging thunderstorm". You need stop wondering where I get my wild dreams from, the roots obviously stretch way, way back!

This game was introduced to my daughter when she was very young, and it was a great diversion for her when she was feeling sick or sad. These days we'll play it from time to time as a silly way to pass the time; it's guaranteed to bring a smile to our faces.

This game has also had reasonable success for me when I'm trying to deal with pain when it's becoming intolerable. Not nearly as much fun to play when I'm here by myself but it does seem to help.

More often these days I find myself reviewing real life situations and discovering that my day reads just like one of my imaginary unique sentences. I laughed to myself as yesterday the following thought popped into my head. "I'm scrubbing seasonal decorative gourds in the sink before heading off to a palliative patient support group at my local hospice, where they generously provide gluten-free snacks". I'd bet my right arm (so far tumour free, so it's not such a bad deal) that those words have never been strung together by anyone in any language!

An update on where I go from here for treatment. I have no idea. Tomorrow I see the radiation oncologist, I'm not looking forward to sharing that I only had a short window of pain relief. But I get to show off my seasonally decorated legs (scary old witchy gams?) I showed the burns to a friend last week who delightfully shares our penchant for stringing random thoughts together - together we came up with an hilarious fictional story for how Sandy got those vibrantly coloured legs. It involves a walk in the forest, an anthill, and bugs that explode with permanent dye when annoyed by a llama.

Next week I see my Toronto medical team. Now that one I really dread. Strong hopes were pinned to the radiation, and after so many experimental clinical trials it's really down to me as to whether I'm even open to trying something else. A few days to go and I'm at a loss for what I want to tell them.

In the meantime, perhaps I ought to give serious thought to writing childrens' stories to keep my mind occupied. What child wouldn't enjoy a story about a pinwheel cookie eating giraffe who enjoys the flea circus? Now if only I could learn to draw...

I Should Count Too...

I realized a couple of nights ago (and was going to write about this subject before other blog post ideas hijacked this one) that I've been in this apartment almost a month and a half and have cooked myself exactly two meals. Yup, just two.

Not that I've been starving at all, friends very kindly had brought by plenty of meals for my freezer and I relished every last one of them. They were truly a blessing when it was hard to even keep my eyes open for more than an hour at a time during and following radiation treatment.

However my definition of cooking however doesn't include heating food up, so in truth I really haven't cooked in this time (and I should note that we were treated to truly wonderful meals when we were left without a home for the three months. Talk about overstaying an invitation to dinner!) I love to cook, what holds me back?

One very simple reason. I love to cook for people I love and care for. I discovered many years ago that there was a very important difference for me in those extra words. When  my daughter was with me, it would be time to break out the fresh ingredients and go to town. On the nights that she was with her father, I'd be eating well if I reheated leftovers but it rarely got to that point. Have you heard of kitchen sink meals? I was the queen of them, eat whatever I felt like grabbing out of the fridge and eating it over the sink so I didn't dirty up a plate. There were some very odd combinations to be had over the years!

Then I remarried and I was in heaven. Trips to the grocery store at least every two days to ensure that I had the freshest ingredients possible, scouring my vast collection of cookbooks and taking great pleasure in knowing that I was putting nutritious and varied  meals (in six years there were very few repeats) in front of my beloved family. And as a bonus they indicated their appreciation for my efforts at every turn.

Some who prepare the family meals may take offence at being given kitchen gadgets for Christmas, but I always looked forward to peeking into my stocking. My husband each year would pay a visit to Williams Sonoma to learn about the hottest new items, and described the type of meals I'd cook to the salesperson so that they could point him towards an appropriate section with tools to make food preparation easier and more fun.

Nothing made my heart swell more than to see my family well fed and nurtured in the best way I knew how. I felt useful, goodness knows with having to give up the job I loved and the ability to do many other tasks this was one thing I could still do fairly often. And if I may say so myself, I wasn't half bad at it either.

Sadly, as many of you know my husband left to find another woman to cook for him. Or if that fell through he'd rather do take-out for the rest of his days than have stayed by my side. And I returned to kitchen sink meals.

My dearest friend woke me up to a concept earlier this year that I'm obviously still not clamping on to, but intend to try to move towards. She is often on her own when her husband is travelling abroad for long stretches of time. It would be easy to do the kitchen sink thing, but she with few exceptions will every night prepare herself a proper meal. She'll have likely perused her cookbooks, shopped earlier in the day and set time aside to prepare the recipes without shortcuts. I've been lucky to over the years sample many of her creations; it blows me away that she puts similar effort into her meal whether she's surrounded by loved ones or on her own.

This dear friend values herself and her efforts (and she's been effective at trying to convince me that I should be doing the same for myself). If I care about myself, then I too should be making an effort to feed myself well. It's been a very difficult road to reach even this point, before leaving me my husband told me in no uncertain terms how little he thought of me (and shared his thoughts with many others as I'm finding out more often as time goes on); it's challenging to recover from such a bashing and I'm not sure I ever truly will. But I am trying. Knowing the truth helps (a nod to friends who oft repeated the phrase "the truth will set you free" to me as I plodded through the fall-out).

Now of course meal preparation comes with heavy restrictions. Almost three weeks had passed before I was in a grocery store this past Sunday. Transportation and the energy to shop are the biggest part of the battle. A very tight budget for groceries another, many ingredients that I would have used in the past are simply gone from the equation. Then I discovered as I was making these two meals, the physical strength that I was once had has been severely diminished. I have to come to terms with the fact that although I love potatoes - there will be no more meals that require the chopping of raw ones. It was quite a pitiful sight watching myself trying to cut through a couple of Yukon Golds this week.

Stirring for longer periods of time is now out too (or even keeping an eye on the pot). I tried pulling a chair up but the ergonomics just don't work with this stove, a singed forearm is what I have to show for my efforts.

Where does that leave me? With all the best intentions to look after my nutritional needs better, but lacking the tools to consistently follow through. It's now almost 7 pm, and I'm hungry and tired after a trip to the outside world today to visit the hospice day program. Time to check out the freezer...

Tomorrow will be better.

S - thank you. For everything you do for me,  and mostly for telling me regularly and often that I still count, especially to my two S's. I'll eat better, I promise!
S, I gave birth to - thank you for offering to chop potatoes for me when you're home from school. I  know what potato dish you'd like, I'll make a whole bunch for you with your loving assistance.
J - for making it your personal mission to pack some weight back on me, and for succeeding. Deliciously! (and Happy 25th Anniversary)
K - for trying so hard to make sure I eat well, and not forgetting about the most important food group - chocolate!
D - Dagnabbit, I will own my kitchen again! Thanks for the encouragement last night on the drive home.