About the good and not so good days…and about thankfulness

I’m just coming out of my latest chemo fog. This round was a bit better than the last three. Those were marked by vomiting and overall just feeling worse than ever, but this last round the oncologist and nurses were able to adjust the anti-nausea medications to a point where I was able to make it through without the unwanted departure of Euphoria’s lemon loaf from my body 😉

As chemo kept getting to me more, I was so thankful for the love and care I got from both my Twisted Sisters in their prayers for me and my BACA buddies who supplied awesome hugs and just plain company to help and distract me from the less desirable things in my life.

On the bright side, I had a few really good weekends: first, Emma and I took a weekend trip to Mount St. Helens, Seaside and Portland to mark the beginning of her time as a college student. We got a few God moments that made this trip extra special: when we arrived at Mount St. Helens, it was covered in clouds. Within a few minutes, it was clear – only to be covered in clouds again just about 30 minutes later. It felt like God had drawn a curtain aside just for us. Then we went on to Seaside, Oregon and from there to Cannon Beach where we spent the evening. The attraction there is Haystack Rock, but we were much more fascinated by a pod of Orcas that came around “just for us”. For over 45 minutes we could see them swim around, dive and splatter! On Sunday, we finally drove into Portland, spent the day between Powell’s bookstore and Voodoo Doughnuts before attending a church that Emma had heard about. The drive home was long (we arrived back in Langley at 1:30am), but it was a wonderful weekend of adventures.

The following weekend, I got to ride to Anacortes with a few of my BACA friends to attend the annual Oyster Run – imagine a little seaside town crowded by roughly 40,000 motorcycles and their riders. We saw lots of people (too many for my liking), lots of bikes (some of them really crazy looking, never too many bikes for me) and we met with some of our BACA friends from Washington. For the rides to and from Anacortes, we found really interesting back roads, curvy and along the ocean – all in all a long, but beautiful day.

This past Sunday was the Vancouver Toy Run. This run was organized over thirty years ago to help collect toys and donations to provide Christmas gifts for children from struggling families. My own kids have been on the receiving end of these donations a few years back (before I knew about the toy runs). This year, BACA was invited to ride right behind Santa, who leads this ride – a big honour for us. It was quite an experience to participate in this 45 minute long ride – and then wait for another 45 minutes before the last riders made it to the end point. The estimate is that there were 1500-2000 bikes in that run! After that we were invited to an after party in Maple Ridge where BACA was invited to have a table to sell T-shirts and hats and raise awareness about what we do. We ended the day in Mission at one of my BACA buddies’ house with a barbecue and conversation, laughter and hugs.

In case you think that I’m away all the time…well, I do work two days a week (one day as a parenting coach and one day at a coffee shop) and I’ve been able to finish a few more assignments towards my Masters. This past week, I was quite anxious about the upcoming chemo which slowed my ability to study down a bit, but I am still decently well on track, hopefully able to catch up over the weekend.

This weekend is Canadian Thanksgiving. To all my Canadian friends – Happy Thanksgiving! To all others – still happy thanksgiving, whether you celebrate now or later or not at all! I am thankful for being decently well, for being able to work and study some and for many fun experiences with good friends!

Long overdue update…

It’s been almost six months since I wrote my last blog entry. Some have worried that I’ve taken a turn for the worst – quite the opposite: I’ve had two clean scans so far (yay!!!) and overall have adjusted to chemo well enough that I was actually quite productive over the past few months. Chemo days are still rough (at times it feels like they are getting rougher – I’ve now had 25 treatments and there is no end in sight), but I still have more decently good than bad days, so that is worth a lot!!

I was able to finish my classes and all assignments for the spring semester, I’ve started working one day a week and doing internship two days a week again, I’ve attended summer classes (still need to finish assignments) and I got to spend some time on wonderful mini-vacations this summer! Needless to say, my schedule was/is super-full and I had to cut a few things in order to make it work (hence no blog posts for way too long).

On the eve of a new school year for my two high schoolers I wanted to at least let everyone know that we are doing well for the circumstances. Miriam left a week ago to go to Ontario for college to do a visual art and design diploma with emphasis on artistic blacksmithing; she got to spend some time with my friend Melissa and her family and is now settled in the first apartment of her own (this mom has very mixed feelings about it, but I’m doing better today than a week ago). Emma has started orientation at Trinity Western University (“my” university here in Langley) to begin her training as a nurse. And I am plodding away at my courses and assignments, hoping to graduate next April (I will need a few miracles in the area of focusing and paper writing, let alone statistics-understanding in order to make this happen, but what are a few more miracles for this family, right ;-)….?)

Thank you for continuing to pray for us – we need it every day! I’ll try to be a bit more regular in my postings again.

Living today…

Apparently, I’ve done such a good job of “living today” that I completely forgot to update my blog!!

When I got my chemo-vacation, I decided to intentionally “take time off from cancer”. I went kayaking, motorcycle riding, I did a few things with the kids, cleaned the house, worked on my art – even got some school work done. For the most part, I did try not to think about cancer and doctors and all the other stuff of the past months.

Now, it’s back to chemo and my “normal” routine of feeling lousy a lot of the time, but that vacation was so good, very much needed. My body got time to recuperate somewhat, my mind got a break as well. For the first time in many months, my brain does not feel completely foggy and even though my energy levels are sketchy, I feel alive and excited in between the times of low energy.

I’m too tired to write more at this point, but I thought the least I could do was write a few lines. Thank you for praying, for encouraging me in so many ways – you make this journey do-able for me, for us!

The Cancer Roller-coaster

Two days ago, I was frustrated and deeply annoyed with my journey. It was day 10 after chemo, only four more days left before the next treatment – and I was still feeling lousy.

Feeling lousy during the first few days after chemo has become the expected. It pulls me down, sometimes to a point where I feel like mere inches away from the proverbial “end of the rope”. And yet, there are people who walk it with me, who rearrange their schedules to accommodate mine, people who love me and my kids in lots of different ways, people who help me/us make it through. – And there is always hope; hope that the next day will be better…or at least the day after that…

But sometimes the nausea and fatigue just decide to cling, I may get a few hours with less than the full dose of discomfort – and then I’m back in the pit of self-pity and whining (even if mostly on the inside), surrounded by people and yet feeling so alone.

So this past cycle, it took 11 days for me to feel like myself again – and then I had an oncologist appointment to get the results of my latest CT scan. I had done a pretty good job of not worrying about the results, in part because I was just feeling so lousy, in part because I have learned the hard way that whether I worry or not, the results will be the same and if I worry about tomorrow, I only take away from today.

But then I was only about 10 minutes away from seeing the doctor and all the stashed-away anxiety came to the surface: My friend and BACA brother, Maddog, was supposed to be there…where was he?…I can’t do this on my own…what if the results are bad?…I don’t really think they’ll be bad, but still…what if???

And then Maddog came around the corner and a few minutes later he was in the room with me – doing an excellent job of distracting me while we were waiting for the oncologist who all of a sudden was there, asking me: “What have you been doing???” I thought he was going to do small talk – I had absolutely no head for that so I told him that I wanted to hear the CT results before talking about anything else. And then he said, “that’s why I’m asking what you have been doing, because the scan was so good, there are no cancerous lymph nodes visible at this time.”

It took me a moment to take this in. Had I heard correctly? Did he really just say what I think he said?

Apparently, yes. Apparently, the oncologist has never seen such a good scan for someone with my diagnosis. Apparently, I’m “almost in remission” – only because with “my diagnosis remission does not exist in the books”.

So, what have I been doing?? – My first thought was, “I haven’t done anything, but there are people literally around the world who are praying for me”…part of me feels elated and part of me feels bad for the many people who also pray and get very different news. But there are so many other factors that have brought me to the point I am at right now…and I come back to my people – yes, I’m being very possessive here 😉

My people, who care for my children, clean my house, make and bring meals; my people who drive me, hug me, encourage me. My people who make me laugh and let me cry.

So, two days ago, I was frustrated and annoyed. Since yesterday, I’ve been mostly relieved, grateful, somewhat giddy about the implications of this scan.

Practically speaking, I won’t have chemo this coming Tuesday – I’m getting a two-week chemo-vacation!! Then on the 24th it will be back to chemo in hopes to maintain the “no visible cancer” for as long as possible. I’m tempted to worry – what if the chemo stops working? And that day may come. But if I let the roller-coaster go too wild, I’ll worry about tomorrow and forget to live today. So, I’ll live today – at least for now.

An immeasurable gift

Hugs.

There are good hugs and bad ones.

Bad hugs, at the very least, are awkward.

They can be painful

Or even predatory.

Predatory hugs

Pull you down;

They objectify

and leave you with a legacy of pain.

Good hugs, on the other hand,

are life-giving,

warm

and safe.

They restore life,

slow down racing hearts

and thoughts.

They alleviate pain and loneliness.

Good hugs leave you with a legacy of comfort.

Good hugs are an immeasurable gift!

Taking “it” for granted…

Today I read about 70 pages for the Marriage and Family Therapy course I am taking this semester – and I remember most of what I read!

A year ago, this would not have been worth mentioning. Of course I read and of course I remembered! But once I got my cancer diagnosis and started chemo, everything changed: I read three pages (granted, it was a textbook on statistics) and when I looked back, I saw that I had read it – after all I had underlined key phrases here and there – but I could not remember a thing I had read. I tried and struggled through that semester (still have the majority of assignments to write). I was discouraged, annoyed at my “stupidity”, my inability to do what I usually do. My daughter made me smile when at one point she tried to encourage me: “Mom, before you were brilliant, now you are like most other people – no one notices that your brain is foggy unless you tell them.” Well, at least my professor noticed, I noticed, and during the days after each chemo treatment, just about everyone else noticed!

And then I thought about the many people for whom this is a daily struggle, even without cancer. How many classmates have been jealous of me for being able to perform at such a high level with seemingly no effort at all when each and every assignment requested a huge effort on their part – and still their grades were much lower than mine? How often have I scoffed and thought, “well, if you’d just apply yourself a bit more…it’s not that hard”?

Or take my health: I’ve always taken a certain pride in being healthy (even though I have been overweight for the past eighteen years) – I hardly ever got sick, I was strong and able to do whatever I set my mind to. And then 2014 happened and things changed drastically. First my ruptured appendix (which in retrospect was my trial run at being weak; I learned to accept some of my limitations, learned to ask for help, learned to allow myself to depend on others – all with the prospect of “getting better soon” and then “not needing that anymore.”) – Was I ever wrong!

Just now, I read an article about infertility and felt humbled to realize how good my life has been in that regard: I got pregnant easily, had uneventful pregnancies, easy births, mostly no complications (with the exception of a miscarriage that ended my third pregnancy way too early, but even then I conceived again within a few months). Now I have four wonderful children and though their toddler years drove me close to insanity at times (and I get a few “reminders” of those times now that they are all in their teens), raising them has been mostly easy, far from some of the difficulties I hear others talk about. I have often taken all these things for granted and sometimes got upset with others, if they complained about their issues, after all, my experience was easy, so why couldn’t they stop complaining??

If nothing else, I believe cancer (and maybe my counselling training) has made me more gracious, more forgiving, more understanding. I have learned to “look behind the scenes”, to ask more questions, to listen more, and to be more empathetic towards others’ experiences. I have even learned to be more compassionate towards myself (still a work in progress, some days are better than others)! I have learned that weakness has its beauty; asking others for help is often as beneficial to them as it is to me – people want to give, to help, to support, if only I let them. I have learned to appreciate my (and others’) efforts – even if the outcome is not “as good as it could be”. And I have learned to be more appreciative of what I have right now: my children, my friends, my church, the weather (whether there is sunshine or the eery beauty of fog), the good days when cancer seems only like a bad dream, time to do art work and so many other things I enjoy.

I guess, I am still learning (and I can be very impatient with that process), but overall there are fewer “it”s that I’m taking for granted.

Lofty plans…

I had great plans for today – my mom had just left yesterday after a three week visit, I was going to rearrange my kitchen, clean my room, do some paper work, pay a few bills and possibly get started on one of several papers I still have to write.

So much for great plans. I woke up with sore hands and feet (one of the more recent lovely side-effects I get to enjoy). Getting dressed hurt, making breakfast hurt, driving to take one of my daughters somewhere hurt as well. This day did not start the way I had anticipated. Ugh. And then I got back home and felt exhausted. Exhausted from what, I asked myself. From doing nothing??? From sleeping eight hours last night? Is this it? Is this what I can expect my life to be from now on? Tired, sore, grumpy?

I know there is much more to my life than these little nuisances, but some days they just seem overwhelming. It probably has also to do with the fact that a lady, whose blog I’ve been following almost since my diagnosis, has been admitted to hospice care – her final days are here, she’s getting ready to leave her family behind. As I do, she knows where she is going, heaven and meeting Jesus are real, but it is hard to think of leaving four kids behind – and hers are much younger than mine. In her blog she grieves “decreasing moments of living and dying” – and I find myself grieving with her. For her and her family, but also for mine.

Yes, at the moment, my scan shows shrinking tumours, my cancer markers continue to get lower and lower (most recently they were at 5.3, the oncologist wants them to be under 5 – close). And yet, at my last appointment with said oncologist, he warned me that the chemo is going to work for a while, but the cancer cells will develop resistance to the chemo and start multiplying again. Then we can switch to another cocktail and maybe another one or two, each less effective and with more side effects, and then there will come a point where no more treatment is possible.

So, I live my days between “lofty plans”, dreams and hopes on the one hand (after all, 8% of people with my diagnosis live past the five year mark, why should I not be part of that group?) and a very harsh reality on the other hand (my oncologist thinks two years is more realistic for me). Some days are great, I can ride and paint, spend time with my kids and other people, get paper work in order, even think about my next paper. And then there are days, when none of those things happen, when I watch movies to try and forget my pain and fatigue, when hugging my kids and getting a few moments of good conversation in is what makes a blah day still into a decently good one! And I wonder and pray, how to live my days well – no matter how many there are…

Good news!!

I just realized that it’s been a full three weeks since my doctor’s appointment and I haven’t shared the new – sorry!

So, the news was that at the moment chemo seems to be working well, the tumours are shrinking! It was a big relief to hear that and I decided to “take some time off” to celebrate – I did go to get me next chemo, but I stopped my cancer journal for two weeks, I tried not to think about cancer too much for that time and to just enjoy life.

That worked to some extent as I had the “best” treatment cycle so far – more nausea but no dizziness and a lot less brain fog due to a change in my anti-nausea medication, but I also had a few things come up that make life more of a challenge (as if cancer alone was not challenging enough, I get to deal with immigration and my ex on top of it – not always the most pleasant experiences).

This is not a “real” blog entry, but I wanted at least to give you the news about the scan. Another entry is forming in my mind, but not quite ready to be tied down in letters and words, phrases and sentences…;-)

‘Twas the night before…(no, not Christmas…”just” a doctor’s appointment)

Tomorrow is kind of a big day…

I had a CT scan about ten days ago that is supposed to show whether chemo is working (tumours shrinking or at least not growing). While I think that they have shrunk (there is one in particular that I could feel up until a few weeks ago and not since then), I am not sure, if that’s true. I was supposed to have a doctor’s appointment to get the results last Monday, but then that appointment got cancelled, my chemo last week got cancelled as well – and the doctor did not communicate, did not call me back when I asked, I only got to talk to the secretary once…not the best experience.

When I did get to talk to the secretary, she had called to tell me that my doctor’s appointment had been rescheduled for tomorrow and my chemo for the day after, but sorry she could not tell me anything else, only the doctor could (the one who did not call me back – great!). So, we’ll see…

I went through a whole range of emotions and thoughts this past week:

I’m mad at the doctor – there are definitely some things that were not okay and that will need to be discussed and clarified tomorrow (I hope).

I also had a choice to make – should I use my energy this week to keep on calling them until I got to talk to the doctor? (and most likely not change anything about the timing of my treatment or get any answers)? Or should I enjoy this week, the sunshine, my kids, my motorcycle and deal with the cancer related issues later?

I chose the latter. Whatever the result of the scan, it won’t change whether I know a few days sooner or later. I decided to give anxiety the boot and make the most of this week. – It worked…kind of…

The good part – I did get to enjoy a lot of the week: the sun was shining every day. It was cold, but beautiful. Because there was no chemo (and by now it’s almost three weeks since my last treatment) I had more energy to spend time with my kids. Off and on, but definitely more than at other times. I rode my (motor)bike every day (almost freezing my butt off at times – although I would never admit that…oops, I guess, I just did). And for a lot of the time, it seemed like I was able to put my worries aside.

That is, until I realized that my sleeping hours had dropped from a normal 6-7 hours to about 2-3 a night…I guess, you can convince your mind not to worry while you are awake, but at some point, it does come to the surface…

Several years back, under different circumstances, the same thing happened. I slept less and less, subsiding on an average of about three hours for a few months – and I found out the hard way that we were not created to sleep that little!

I’m glad to report that I did learn from that experience (yep, sometimes I do learn from my experience!!) So, once I realized what was going on, I used some of the tools that I had found to be helpful in the past: I took my sleeping pills (I try not to take them all the time and then sometimes forget to use them when I really should), I met with my old therapist (he “loves” it, when I call him ‘old’), I journaled, I made sure I got a sufficient amount of hugs (and even got two unexpected extra ones!), I worked on a few art projects and cleaned our kitchen and living room today…and all that helped – until this afternoon…

Over the last few hours, anxiety has crept back in…what if this and what if that…and while I do not particularly like to be anxious, I’ve decided that it’s okay. It is okay to feel anxious when facing uncertainty. It is okay to worry and think through the various ‘what if’s’. As long as I don’t let it take over completely (writing this blog also helps)…

So, tomorrow, I’ll be going to the cancer clinic to meet the doctor and hopefully clarify a few things, get the result of my CT scan and confirm my chemo appointment. And because I’m learning to take care of myself, I won’t be going alone, I’ve asked one of my biker buddies to come with me (it still takes me by surprise sometimes when people are willing to be there for me – but I’m learning even in that department!)

And so: ‘Tis the night before my doctor’s appointment…

Life with cancer – hard AND beautiful

This past week, I got round 6 of chemo. It’s been a harder week. More nausea, more fatigue, more dizziness. It’s hard when I want to be there for my kids – and I can’t. It’s hard when I want to just quickly pick up the house – and I don’t have the energy. It’s hard when my kids are fighting and hurting and I just can’t summon the energy to be there for them in a meaningful way.

And in that hard, it is easy to get discouraged. It’s easy to wallow in self-pity. It’s easy to look at all that I have lost, all that I can’t do, all that I wish for – all that is not possible. Maybe just for a while, maybe for good. I don’t know; and the uncertainty adds to the hard.

But then there is also beauty in living with cancer and dealing with chemo. A few years ago, a friend’s wife was dying of cancer and when I asked him how they were doing, he would usually answer: “We are learning to live one day at a time.” It made a lot of sense then, but looking back, I have to admit that I had no idea what he was really talking about. Some things you can only grasp to a degree unless you live them. And yet, the concept has stuck with me and has become my guideline.

Before I was thinking and planning ahead, months and years – wishes, plans, ideas: I’d finish my degree, build a better life for the kids and myself, maybe buy a house eventually, get a better car, travel (motorcycle and tent trailer throughout North America…). Now, I spend a lot of time sitting in my back yard, looking at my plants, watching the birds fly in and out. Then I gather a bit of energy and feel accomplished when I am able to load the dishwasher or cook a meal. Some days, I wake up and know that unless a miracle happens, I won’t have the energy to even provide a meal for my kids. I look at my finances and I start worrying – and then someone calls and announces that they will be bringing a meal, someone else feels compelled to give us money, a friend comes by and hangs some pictures, fixes the dryer hose, gives me a hug – and I feel blessed, cared for and the worries retreat, at least for a while.

I find it hard to ask for help, to make my needs known – and yet, when I do (and sometimes even before I do), I get to experience the beauty of community, the beauty of people wanting to be there, reaching out, lightening the load.

Some days are hard, but even the hard days have moments of beauty.

Some days are good, but even the good days have moments of hard.

Some days, it feels like cancer is just a marginal character.

Some days, it’s the only thing I can see.

I’m learning to live one day at a time, dependent and interdependent with my community, making my needs known – and accepting when they can’t be met the way I’d like it. I’m learning to accept the hard and celebrate the beautiful parts of life with cancer.