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Seriously, WTF

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I’ve turned this page about dealing with breast cancer into a blog post, and am backdating so it disappears into the archives, but is still available to someone who may find this medical outline of my treatments helpful.  If you have been diagnosed with cancer, this is simply the updates I shared with people so they could better understand the treatments and process of the medical side of things. I have fun, magical and some funnier blog posts about other things that went on during this time, if you’d like to have a peek in the 2012 2013 year of this blog.
Mostly, though, if you are here for that reason, I wish for you that you have what you need to make this time do-able. I wish for you a healthy outcome. Don’t be afraid to ask for help -from friends, family, anyone. It is amazing how much people want to help, Ido know how hard it is to ask. But ask, anyway.  And you can ask me, too. As a coach and someone who’s been through this, maybe I can help too.

(If you’ve been here before… the latest update can be found by sliding a ways down this page to the May 2018 entry

Okay..if you read my bio.. you can see how much I’m in love with so much of my life.   I don’t love the part that I was diagnosed with breast cancer. I love some of the amazing things that have happened as a result, but really, I’d much rather not be doing this particular journey. For those of you who’ve had or are dealing with cancer.. the details and type matter. And for some, perhaps you have an interest in understanding more.  I’ve learned that now.  This is the page that tells more about those details and updates the experience so far.

It all seemed easy peasy at the start.
It started with a routine mammogram and then I was diagnosed with simple DCIS (non-invasive cancer) in a needle biopsy.. I was relieved. NO, actually I first said to my doctor, “WHAT THE FU^K? SERIOUSLY?”  He said he’d said the same thing.

You see, my daughter had had  a rare cancer, a type of germ cell,  involving an ovary –  diagnosed less than two years earlier. She is doing awesome now. Really.  (Update: She has since had two children!!!! Purely beautifully amazing!)

But it was a very difficult time for her.  Think.. a number of critical days and two strokes through chemo, virtually needing 24/7 care,  and that gives you a bit of the picture.

Not long after her chemo treatments were over, my granddaughter then age 3, had lumps in her neck. Several months later it was finally diagnosed as Cat Scratch Disease. Yes.. also not common, but not cancer, and she is doing very well.  Some of you who know me may be surprised to read we went through that too.

So, the “WTF? Seriously?”  was well deserved.  The next words out of my mouth were “How the fu*k do I tell my daughters this???” The F word was suddenly rather prominent in my life.

And next was “I need to know everything about this before I tell family.”   The usually accepted ‘simple’ ,’ this percentage’, etc.. wouldn’t work for us. We’d heard all the ‘great’ percentages of ‘not serious’ with my daughter and then watched as she was chronically hit with worse and worse and rarer and rarer news and rare reactions to chemo, etc, etc, etc.

But an almost instanteous visit with the surgeon assured me that this was simple. THEN, I was relieved. Protocols are well known. Remove the tiny bit. Probably radiation. No chemo.    It felt easy peasy. And I could tell all the family and we could feel confident.  I know it sounds crazy to say ‘easy peasy.’  In perspective with what my daughter went through, and given that we’ve had a number of losses in our lives that I won’t begin to go into here…  this seemed ‘easy peasy.’

That went badly astray though…

It all began February 2012

A suspicious mammogram.. led to a biopsy.. led to a diagnosis of DCIS: a non-invasive type of cancer.

April  2012
A lumpectomy.. that resulted in discovering another type of cancer: mucinous carcinoma. Not large. Rare. Invasive but not very aggressive. At the time, it looked like ‘if you have to have invasive, this is a good one.’  My daughters whisked us all off to a spa for the weekend after this report.. a wise move – it kept the ‘nightmarish’ feeling that can happen from setting in.

But a masectomy was required.. so… my dear artist friends painted my breasts beautifully and that’s when I shared what was going on more publicly. I wouldn’t have actually easily done that, but one friend posted a photo of the paintings on facebook.. so what I shared is below.  I want to say I am ever ever so grateful that photo was posted because sharing what is going on has resulted in support I could never have imagined. That support has fed my soul and kept my spirits lifted.

“On this journey,
I will use creativity.
 I will use magic.
I will use laughter.
I will use adavan …
I will hang out in nature
But most of all, I will bask in the love and support
and wonder of those around me
For all of that, I feel blessed.”

ps. The adavan is for the times the ‘f’ word events keep me up at night.
Although, melatonine is working now.

May 2012

Masectomy with sentinel lymph nodes removed.  Included in surgery beginnings of breast reconstruction. (Tissue expander inserted and it is gradually filled with water to stretch skin in preparation for an implant further down the road)

Results: Lymph nodes clear, only small amounts of DCIS found and no more invasive.

Soooo.. we’re thinking still this is simple. No chance of chemo with this diagnosis. Won’t need radiation. Likely tamoxifen to lower risk of recurrence with this likely estrogen receptor + type of cancer.

Healing has been curious.  My healthy breast actually would feel the pain of the other. I’d simply say, “no, you’re fine” and the pain would stop.   If you’ve nursed a child you know how ‘connected’ those breasts are and this seemed to prove it.   As it turns out, I haven’t had a bad reaction to losing one breast… I’m strangely fond of the new one in the making.

And more curious: I developed a rare (again?!)  ‘mondor’s syndrome’… my bionic body created a whole new ‘cord’ to drain fluids. Rare. Weird. Will go away on its own. That and a seroma (swelling) were painful for a bit, but really all healed extremely well within a month.

June 2012

The shit hit the fan. Showing up to the oncologist to hear his recommendations, we did not expect to hear 6 months of chemo plus 9 months more of herceptin. Results had come back that I had the Her2+ gene…  a factor that turns things into a more aggressive type of cancer.

I went home stunned.  I relooked at the research and knew why I hadn’t expected this.  Mucinous cancer and Her2 +  do not happen. They do not go together.

I presented my evidence to the doctor who agreed that this was very  rare.   Doctor called a top expert in Canada, pathologies all relooked at, and I am impressed at the effort that has gone into figuring this out. And it looks like the tests were right and  my diagnosis is .2% of all breast cancers rare.  2/10ths of a percent rare. WTF?

And so now, I sit with a situation that doesn’t have a known protocol for treatment. But I am extremely glad I did my research, that experts were called in, that the chemo protocol was changed to at least somewhat less toxic and somewhat shorter.

The reconstruction part of things has gone well. Today the final ‘fill’ of the tissue expander took place, just in time for the rest my skin needs before next steps. .. and that works because more fills couldn’t have happened during chemo. Why did we get so far so quickly with that process of ‘filling’ the tissue expander?  1. Skin healed so well very quickly. I even have new nerves!  Many factors helping.. the bionic body maybe?, the visualizing, the healthy eating, the magic and wishes.   2. Might be because .. well, you know.. it’s not like we have to go all that big to match the little’ un on the otherside. ha!  I really wanted to post on facebook: “Huzzah, my booby is full! My booby is full!” .. maybe that’s what triggered finally writing details here. So many crazy thoughts I’d like to share seem to require some background info.

I start chemo on Monday. I’m going to get creative with this… and find a way to be pleased that chemo is curing me.  I’m not sure yet if I’ll get friends to paint my bald head. We shall see.

I plan to share some of the sketches and bad poetry.. the stories and the insights on my blog. The passion to reduce fear in our collective thinking. The healthy meal plan to optimize my body’s ability to heal. The alternative, the integrative care. The one coffee a day that I’m not giving up.  The humour. And, of course,  the magic. That’s the stuff that I want to write about. But this page… it’s here because… well, if I were reading my blog, I’d want to know the background about why this life coach is suddenly writing bad poetry about chemo!

November 7th, 2012 Update:

So. I see I did not keep the medical details updated. There have a number of related blog posts as I went on this kemo adventure. They can be found in the blog category “Healing Me – A Healing Adventure” if you’re curious.  There’s over a dozen more in drafts: insights, maybe some wisdom, the ways I used creativity and play to help me, but alas, I’ve noticed that finishing things hasn’t come easily the last 4  1/2 months. They’ll get done sometime.  (Happy to note that I’m currently working on finishing my novel in progress through Nanowrimo. November Write 50 000 Words in a Month project) Facebook turned out to be the place I updated life most… but especially for me it’s been a place to show up and celebrate what’s going right.  A good thing to focus on through kemo, I assure you.

But I realize people are curious but hesitant to ask the medical details. So here’s what’s happening, here’s what’s next.

My treatments are to reduce the risk of recurrence of breast cancer.  The cancer was removed in the surgery. The treatments are to ensure that if there were any microinvastion of cancer cells, they are stopped, and thus reduce the risk of recurrence.

Chemo involved 3 separate drugs, (carboplatin, docetaxel, herceptin) given intravenously every three weeks up until 2 weeks ago. A challenge in the process was my consistent allergic reactions to each one. Call me the entertainment committee of the chemo floor. Or, as the nurses say, I’m on the ‘special’ list. So, I was treated with rather extraordinary amounts of steroids, benadryl, and lipitine to prevent serious reactions, before, during and after treatments.  I would like to thank my kemo buddies… dedicated souls who picked me up, sat with me, supported me, painted, drew, played cards, made me happy, and later filled me in on what I didn’t remember.  They are Coreena McBurnie, Melanie VanMol, Una Connor, and Courtney Charlton, daughter who sat through number one..  I am sooo grateful! And my family is grateful, too. They liked that I got to hang out with you.  They were on call for other things a lot of other days, so I’m glad they didn’t also have to do chemo days.

At first, I thought the three week period between chemos would become predictable… good days, not so good days, etc. But that fell by the wayside by round two and I learned that each day was totally unpredictable as far as side effects. The good news, though, was we knew almost immediately that I was not going to go through the extreme difficulty that my daughter went through. (A different chemical protocol altogether) Having that to compare too made my treatments look pretty simple.  It’s all about perspective. I was pretty darn happy about this!

It wasn’t fun though.. but if you’ve watched facebook, I’ve definately focussed on ‘fun’ to whatever extent I could manage.

Chemo side effects for me ranged from upset tummy.. but not horrid. There’s drugs for that.  Weakness, losing hair (ugh), exhaustion, mouth sores, food tasting horrid, numb fingers and toes, (but I did not lose my fingernails and toenails, which can be a side effect. Yay)  ringing ears, leg pain, shortness of breath, bla bla bla. Tiresome, yes. But do-able.  Tricky for me was the steroids and antihistimine combinations for the allergic reactions… my body never knew whether it was supposed to be hyperactive awake, or drugged asleep.

Side effects are cumulutive, so as time passed, the side effects did worsen. September and October were rougher, and even walking across the yard could be a big deal. On other days, though, short walks in nature rocked.

My brain definitely has had focus issues.. and the same people mentioned above were awesome in reminding me of important medical appointments, once I discovered I would forget.  But I’m not so sure it is ‘chemo brain’ as much as it was perhaps my brain saying, “Wow, you’re going through a lot. I like this ‘feed my soul – do what feels good’ thing you’re doing. Really, how can you expect to focus on other details, or taxes, or energy draining stuff when there is already enough stress and when healing is the important thing right now?” So, good little brain that it is, perhaps it purposely made itself unavailable for things that might have been more energy draining, or cause me more stress in an effort to stay on top of things.

Eating extremely healthy has been a big part of my healing as well.  Again, I thank family and friends for extensive support on this… not an easy meal plan to follow, but so many people did and contributed to my efforts to eat well. Honest, I could not have done this without you.

In addition, my medical team also included my blood analysist specialist and the doctor at Inspire Health Integrative Cancer Care.  I took (take!) supplements, in addition to healthy eating, specifically for reducing side effects (and I do think they helped a ton).  The trick to all of this is to find that team. Trying to learn on your own what supplements would support the process, yet not interfere with the chemo doing its work would be very difficult. And it is KEY to ensure your supplements are not stopping the chemo from doing its work.

My intravenous treatments now continue for an expected nine months with only the herceptin. I’m a little cranky because finally I had some expectations of whoot whoot… feeling better, hair coming back, energy back.  Strangely I had an allergic reaction within a couple of days of herceptin, that we thought had been related to the other chemos:  swelling in neck, chest, shortness of breath.  And I’m still having weakness and such.  The crankiness is a direct result of leaving my realm of ‘take each day as it comes’ these past months, and having some expectations to now get a heck of a lot better quickly.  I am now practising ‘what feels good’ and some patience again. Herceptin is considered key in my treatment as it targets that HER2 gene mentioned earlier, to reduce the risk of recurrence of breast cancer. Visualizing no allergic reactions, because steroids and antihistimines etc for 9 months is not ideal.

I’ll also be starting on another ‘hormone therapy’ (tamoxifen).. oral, daily, for 2.5 years, and a second type for 2. 5 more years. It is not hormone therapy as one might think. It is more of an ‘anti-hormone’ therapy that stops estrogen/progesterone from being a fuel that might increase chances of recurrence. Both herceptin and tamoxifen can have serious side effects… so I get regular checks on my heart as this proceeds, as well as regular follow ups on my general health.
And in the not too distant future, there will be two more surgeries to complete the breast reconstruction.  Simpler surgeries, and it will be nice to get that done.

The challenge of the diagnosis I had is that there really are no statistics about how much the treatments reduce the risk of recurrence.  In a more ‘known’ diagnosis a person might chose not to have some of the treatments if they reduce the risk only by a small amount.

I am very happy to notice that my hair is starting to come back. Yes!

I’m really tired…. I didn’t think I had this much to say here, and I must get back to the novel!!   So, I’ll press update, without a good edit. I wonder if I ought to count this as my word count for Nanowrimo. Ha!

Most of all …. I am so grateful to the support I’ve had from sooooooooo many people and in so many ways.  Physical, emotional, financial, creative, metaphysical, and kindred spiritfully. There’s actually statistics that show how a community of support reduces risks of recurrence.  Well, then, I for sure, have no risk.  Thank you precious people. One of my joys has been creating thank you cards… they are still unsent, oy… but my daughter assured me that no one would expect that I could get it together enough to send out thank you cards. I hope that’s true. But please know I am grateful.. oh sooooo grateful for the support I’ve been blessed with.

Onward. Yo ho Yo ho!

June 25 2013  Update

Oh where oh where have I been? Well, honestly… slowly, quietly meandering my way into what is now classed as ‘mildly to moderately depressed.’  I could see it happening as I began the tamoxifen treatments and slowly quietly began getting more and more side effects – with moods being a key one.  My hair all stopping growing is another tell tale ‘all is not ideal’ sign. And I was on continued ‘chemo’ treatments of herceptin up until mid June. I’m now finished those. YAYYYYYY!

Whoot whoot whoot whoot!  One year of injections finished! (My chemo buddies and I did something really fun/funny… we’ll reveal that soon.)  And ideally, the finish of that treatment may make the ongoing oral tamoxifen treatments easier. (Oh, and I did have the second reconstruction surgery in March … things are coming along prettily. Very impressed with what surgeons can do nowadays)

So, although I’m aware that things are playing havoc.. it’s okay. Supplements recommended by my Inspirehealth doctor are helping tremendously.  Anyone reading this who is in Canada….please consider making Inspirehealth part of your team. This is the only place I know where there are medical doctors who are experts in what you can take or do, that will not interfere with chemo and other cancer treatments.  Sooo important. If you are someone who is dealing with healing from cancer, on tamoxifen and herceptin, and want to know more about the side effects I’m experiencing, and what I’ve learned… please contact me!

And it’s also okay, because I stayed ‘reasonably’ true to doing things I love even if it’s been harder to ‘feel’ the same amount of joy, rush, and fun. Some days it’s been “just read a good book.”  I’ve written a little book called “The Crash, Creatively”… so far just for my doctors, but will do more with it, I think.  I’ve played on my paddleboard at Hornby Island with dear muse friends, and paddled and hiked and hit the hot springs in the Rockies. I walk regularly and hike once in awhile. (But Kamloops, cut with all the rain!)  I’m shocked to notice that I may well have become a foodie!  Sometimes I work hard at eating… but I do it anyway, and it’s all good healthy shit stuff.  I’m delighted to have one online course going and am loving doing that, as always.  Onward… small step, by small step. And yes, I sketch, and my paint sketches, as I call them, continue to give me intuitive wisdom about what I need to keep taking steps.  In amongst selling my house and financial crashes…well, I guess I can give myself credit for creatively surviving financially, in addition to so much help from the community last year.

Sounds like I’m doing awesome, when I read all that. Ha Ha!  Okay, screw the cranky.. I’m doing awesome.  But it’s not me that’s the most awesome….

Remember when I shared this when I revealed that I had been diagnosed with breast cancer?

“On this journey,
I will use creativity.
 I will use magic.
I will use laughter.
I will use adavan …
I will hang out in nature
But most of all, I will bask in the love and support
and wonder of those around me
For all of that, I feel blessed.”
The reason I’ve been able to get through this the way I have, is not so much cuz I said I’d do these things; it was because my family and friends and a whole community including people I didn’t know, believed in me. That kept me going. Thank you for believing in me, even when I had some serious doubts.
And for those I know who are also going through this difficult experience, I sit in awe of you… some are dear friends and some are people I’ve met through this process… some with diagnosis that are really very difficult… well, you inspire me with your courage, and ways of being through it all. My wishes for happiness and wellness are always with you
Cindys ship

My Ship – full colour, full sail ahead…. I can do this… with great thanks to my supporters and cheerleaders who believe in me.
Artwork by Cindy Hayden, Gifted by her and ‘everyone’ ~smile~

Now trying to kick it up a notch, now that the herceptin treatments are over. There’s more to get me moving… my daughters have given me a whitewater rafting trip as a celebration gift, – they know how to kick their momma’s butt in gear. And I applied for a two week training on a tall ship. … haven’t heard back from that yet, but hoping… won’t that just rock!  And the reminder to apply ( this was something I was going to do before the diagnosis of cancer) came within moments of another amazing gift given to me.

This extraordinary stained glass ship was given to me by Cindy Hayden, artist, and ‘everyone’.. yes, that’s what they said, this gift is from ‘everyone’ who have been supporting me.  This is my ship.. full colours, sailing forward, filling me with the energy, passion and “Oh ya, let’s rock this” feeling once again.  So grateful to Everyone!

And now… recreating life…. an overwhelm of ideas  (yes, a little slow yet on bringing those to life!)  and I am healthy and well!  If a little cranky, a little weaker, but this too shall pass. Play, create, nature, family and friends and people a priority, give back, recreate my business,  explore, dream, discover, permission to keep asking “what will lift your spirit today, Janet?”, permission to ask you ‘what will lift your spirits today?” (snicker)       … life rocks! Even if some of the YO HO YO HO’s are simply a quiet yo ho sometimes. ~smile~

Baby Emaline was born December 28th 2012. Beautiful miracle child, and my other two  extraordinary granddaughters, light up my life!!!

 November 2014  Update

A call with a young woman today who is going through treatments for cancer has me finally getting to this page. It’s been bugging me lately that I’m a bit like those events you hear on the news… the ones you hear about  because of some crisis or success or controversy, and the whole world watching cares… but you know that the media will drop it before you ever learn the outcome.  And I don’t want to be like that – not giving any updates. But it also feels a bit weird feeling like you were an ‘event’ and that people would care to know what’s been happening.  You know?  Ya, I think you get it. So, I don’t make this page leap into everyone’s inbox or anything. It’s just an update, should someone happen to be wondering and stop by.

The funniest part about this is that I laughed out loud at my June 2013 update. Only three weeks later I applied to train as a tall ship sailor on the Lady Washington.It happened like this: I stopped taking tamoxifen for five days a few weeks after herceptin treatments were finished, just to see if it had been herceptin playing havoc, or how much tamoxifen was affecting my physical and mental wellbeing.  I just wanted my body to have a few days of reconnecting to its normal. Well, on day 5 I was so high on happy I applied for the training. Then I continued my tamoxifen with it’s ups and downs’ got accepted for training’ sailed in November despite not being ideal, body and mind and soul stepped up to the job the moment I hit the ship,  it was amazing.. truly amazing, and  I made the cut as a sailor to be able to volunteer with them again. Being Canadian, I can’t work towards a paid job, but volunteering is good. I got to volunteer again in July 2014 with granddaughter in tow. This stuff is on the regular pages of my blog. Sort of. I’ve not been ideal at updating that either. Ha!

On the more technical medical end of updating though, here’s where I am at now:  I recently began my 3 years of taking an aromatase inhibitor, Letrozole. Like tamoxifen, it is a drug meant to prevent estrogen or pprogesterone from being available to fuel any cancer cells that might exist.  My tamoxifen protocol was due to end this coming December, and I had been doing reasonably well on it (It was 14 months into the tamoxifen regime that it stopped having any mood or other weird side effects), but guess what? In August, the brand of tamoxifen was changed. And within a couple of weeks I had so many strange symptoms and side effects – chronic sore throat, female and bladder issues that one doesn’t like to mention in a blog, my hair grew quickly suddenly but any body it had disappeared, etc.  Of course Doctors tested me for many things and then agreed it was the change of brand that made the difference.  I have been quite vocal about this on sites where people who might be affected are. It’s scary that a woman might be issued a brand that causes all sorts of side effects, and then expect that is what they must deal with for 2 or 3 or 5 or even 10 years, not knowing a brand change might be all it takes to make things better. (This is true of all drugs, by the way, a different brand can cause total havoc. Might be fillers, dyes.. but apparently it can also be less or more of the prescribed drug. It’s crazy out there in the pharmaceutical world, people!)

Also sometime along the way I had my breast reconstruction completed… did I even mention that? I honestly don’t remember when, in amongst all that has gone on. New implant. It’s okay. A little funny looking when I flex muscles, but still it’s my skin from my breast and that, for some reason, has always made me feel good about it.  I also got a new nipple… which it’s pretty cool how they create it from the skin on my breast. It did end up flattening quite a bit, but I will still run around braless… cuz two nipples sort of showing is so much better than just one. I postponed getting a tattoo to complete the nipple look.  I think mainly because a little research tells me that tattoo inks are not necessarily healthy, and apparently I don’t care enough to get a tattoo to fully research that before I risk putting ink on the same breast that had already been compromised at one time.

So. Am now on Letrozole for 3 years. (2018 UPDATE… that one lasted about a month. ha!) All is okay with it.. hot flashes do continue, but manageable. Some pretty severe joint pain at first, but for anyone reading this who is dealing with this: I question if that ‘start up’ joint pain was more a withdrawal from tamoxifen than going on letrozole. It’s settling so I am planning to not have the side effect of joint pain during this treatment.   Side effects of it,however,  can include bone loss, which is also simply not acceptable to me, so I continue with good supplements. I continue with follow ups with my blood analysist fella. I’ve upped my motivation more than ever to stay active… worrying a bit about staying really active through winter since I don’t do gyms (can’t be in fluorescent lights.. that’s another blog I have)  BUT keeping active is the best way to build bone…. I’m calling it a good excuse to play, me thinks.

All of those crazy symptoms from the brand change are settling.

And so, onward I go yo ho ho!

Another miracle baby is on his/her way.. due December 25th!  So blessed. Granddaughters and their moms and dads continue to be my spirit lifters. As do friends and other family.  ~smile~

I have so very much to say about all of this, medically, philosophically, spiritually, creatively, physically, mentally… ha ha.  Okay, I have a lot of thoughts about what helps, and what doesn’t help – for a person going through this, for those supporting, and for the world in general. What I do know now, though, is this:  if I get to chat with someone  dealing with cancer, and I can help them even a little bit to make it easier, or to save them research time, or especially, help them to not blame themselves, then.. thank you, Universe, for giving me that opportunity.

And my fourth granddaugher, Heidi, was born December 5 2014. A miraculous blessing.. precious child.

~~~~

AN IMPORTANT NOTE:
A tidbit for anyone going through this, besides truly paying attention to what lifts your spirits, I also know healthy eating and good supplements made a big difference in getting through all this. Not perfect eating, but a commitment to pretty darn good healthy eating. Inspirehealth Supportive Cancer Care – the site doesn’t say enough. Schedule to talk with a medical doctor (they do this by phone if you are not in a community where they are) Know they can prescribe the correct balance of supplements for you, your treatments, your side effects, and what your blood tests show.  I am forever grateful I accessed this medical care, especially through the most difficult treatments. This service is free for Canadians.

~~~~

May 2018 UPDATE

In November 2017, I celebrated finishing 5 years of what I call anti-hormone medications. Tamoxifen, Exemestane, with some ones that were too full of side-effects in the mix. None were fun. They were do-able with adjustments to versions of the medications that caused less side effects.

These drugs were harder on me than I realized: I realized only after being off the drugs for a few months. Last year my neck was in constant and often severe pain, and I tore the miniscus in one knee and had the other knee threatening to do the same thing. I ended up unable to work for quite a period of time, nor ski, nor hike, nor paddle (eek)… yet, nobody suggested that it was the meds causing such challenges. Until I met with the oncologist at the end of the five year treatment plan, and he acknowledged that the meds caused the physical problems. I suspect if I’d seen that particular oncologist a year earlier he would have taken me off the drugs. Alas, that’s not what happened, and who knows, maybe that extra year did that extra thing that is keeping me healthy from now on.  I don’t resent taking these drugs at all. Given the rare diagnosis, it seemed the wisest choice to cover all options in treatment because there simply are no statistics to say what percentage the drugs would prevent recurrence with the diagnosis I had.

And the next thing I realized after a few months of the drugs… I GOT MY BRAIN ENERGY BACK!! It’s not that it was all gone, but certainly I didn’t have the thinking energy I had in the past. I even berated myself a bit here and there to get my shit together. My usual complex and often inspired thinking just wasn’t quite all there. You don’t really notice this change drastically… you just kind of carry on making the best of things.  But with this return of brain energy, I’m finally able to take on much more. Since I won’t actually retire like most people, (all my retirement and investment funds went to getting through the really hard years), I’m putting my energy into creating my income through all that I love.  Check out Writerlykits.com… oh my gom, I’m so excited about this new business that combines all I love and all I do well in a subscription box for writers. It’s scary, I’m on a shoestring budget, but I think I can pull it off.  And I continue personal coaching with my ongoing clients, but now I have the energy to get more of that happening.  I’m on a huge learning curve with the new business, and looking forward to engaging with more kindred spirits.. and all of that can be nothing but good for this brain, body and soul of mine.

Yes, it’s been a chaotic and, honestly, very difficult time, physically and financially, and too often with ‘scares.’  You’d be surprised how often little quirky things happen in the body, and suddenly you are having a thyroid scan or a colonoscopy (ugh) or the mammogram (that one continues to surprise me how it can throw me into a very dark place while I wait for results – all 10 minutes of waiting)

But paying attention to what I love, even if I really ‘should’ be doing other things, has kept me happy and always feeling blessed. Those grandgirls, oh my, what treasures. My daughters, my small extended family, friends, coaching clients (yes, I do love coaching and being witness to my client’s discoveries)  paddling, painting, writing, publishing my book (I published my book!!)  – well, all of those beautiful things in life made the rest do-able.  I’m hoping my body gets rocking awesome enough to go back on the Tall Ships!

And on that note, I’m taking this page, turning it into a blog post, and it can just disappear into the archives – with maybe a couple ‘tags’ so somebody who does want to read this story might find it.

Tada! Yo ho ho… and onward I go! I love each and every one of you who have supported me so well, and made me feel valuable and loved.  You all know who you are. Thank you.

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Thoughtshifter, Spiritlifter, Anchor – Mine’s a little nautical. What’s yours?

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P1070852In July, on the lovely Tall Ship Hawaiian Chieftain, I got to sail through the San Juan Islands, with my 7 year old granddaughter in tow to boot! Learned so much. Lived so much. And had a little discovery afterwards that I want to share…

At the end of the day on a tall ship, the Captain holds muster. The crew gathers and waits respectfully for the Captain to speak. I was surprised to notice a common occurrence during muster on both ships and with both Captains that I’ve now had the wicked opportunity to crew with. It is this: If we had gotten to sail that day – if the winds were fair, the sails set, and we got to feel the magic of a large tall ship slicing its way through the ocean powered by wind alone – then on those days, the Captains would start muster with: “We sailed.”

And then, it was like nothing more need be said. “We sailed” said it all. We had lived our passion and purpose that day, nothing else mattered. The crew would all nod their heads, contentment and a hint of pride on their faces. It takes a lot for a Tall Ship to be maintained and ready to sail, let alone actually sailing her. The crew and Captain deserve to have this moment of complete satisfaction. You can be sure, too, the crew were kindred in knowing those days ‘we sailed’ would keep them inspired as hours on end they tar lines and file rust to keep their ship shipshape.  Muster always continued as it must (wait…is that how muster got its name?)… but I do recall one captain one evening adding, after the pause that followed”I sailed,” something along the lines of “I suppose we should talk about more things, but that does seem to be enough.”

Fast forward a few weeks. August. Driving in my car, fussing in my head about stressful things, feeling anxious about more changes coming up in my life – good changes, including another move, but unsettling in the process. Running endless details through my head and thinking myself into a bit of overwhelm. And then it happened: I heard myself think, “I sailed.” I grinned ear to ear. The fussing thoughts fizzled out like water was dropped on their fuse.  It was like nothing more need be thought.  Sure, it might not be everybody’s way of finding zen. But then, I also find zen in clay that goes entirely out of whack on a pottery wheel.

When I started thinking again…still grinning, I admit… I was simply reminded that life is always offering up grand things, even making impossible things possible,  and will continue to. The proof is in the past (and surely in the future): I sailed.

That simple two word thought has now become my anchor. (sheesh, I’m so nautical now)  When I’m feeling like I’m in a whirlwind of change, and uncertainty is feeling more unsettling than it is adventurous, I think “I sailed.”   Another phrase  I’ve used in the past and it’s even a better fit now with my “I sailed” is “Alls well.” Besides reminding me that, in truth, in the big picture of things, all is well, whether I as my mortal self can fully understand it or not,  I am reminded of the calls of the first mate as each sail was set;  “Mizzens  well. Tops’l well…”  When the sails are set just right, all’s well.

It was magical, really, how instantaneously my thoughts and my mood shifted when “I sailed” came to mind that day driving in the car. Nothing less than magical.  You know the kind of magic…  like faeries had dumped a bucket of “lighten up” dust on me. Or spirit guides rolled their eyes at what was going on with me and snapped their magic fingers to make me happier.  You know that feeling, right?

I  wish for everyone to have moments like that… and I suspect many of you have, being the curious and interesting folk that you are who follow this blog.  In fact, I suspect everyone can have those magical thoughtshifting spiritlifting moments. They just need to find that anchor.

How about you? Anything that says, “all is well”  even when life is a bit crazy?  Yes, Life can get stormy. Seems there’s always going to be some uncharted stuff getting in the way. We can all use an anchor we can count on.

~~~~~
This  post is dedicated to you, my friend who left me a message saying, “Janet, there’s no post in August. How are you? Hope alls well?” Thank you so much for caring. ~smile~
Friends and family… they are anchors, too, don’t you think?
~~~~~

Onion Satire and My Crazy Tiny Heritage Log Cabin Home. How did I get here?

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Some things just must be shared and this is one of them:
Find The Thing You’re Most Passionate About, Then Do It On Nights And Weekends For The Rest Of Your Life
By David Ferguson

http://www.theonion.com/articles/find-the-thing-youre-most-passionate-about-then-do,31742/?ref=auto

I hope you read it. It’s brilliantly funny. And once you do, you’ll understand when I say this is why I went into recreation and leisure management many years ago… in the hopes that someone might recognize their recreation and leisure time as having potential to be much more a part of their life. Then life coaching came along as a profession and I went there… because snippets of what you love in a week or a month or a year, is just not enough.

~~~~

cabinAnd so, staying true to what I love…Yes, I’m living in a log cabin. I moved in last week. It’s 160 years old.. the oldest heritage building in our community… cozy and sweet inside with 400 square feet of room for my projects, written works and art works.  It’s on a small farm, near the river where I can paddleboard. And a bonus; it’s a very cool experience for the grandchildren when they visit.

It is a bizarre yet extraordinary thing how visioning can make things happen. I’ve wanted to try simplified tiny house living. I wanted the option to be near water, yet close enough to town that my family and muse friends aren’t far away. And I wanted ‘cheap’ so I could get myself back on my financial feet.  And so here I am.  Even I am surprised I am living here; I was not actively looking, but I was imagining.  A friend heard about it and told me.  Visioning is like that.

A cabin has always been my place to really make things happen.  The timing is perfect; I’m feeling well. I have written works galore from the past couple of years to fine tune and get out there. I have what I hope are inspiring, fun, quirky courses and discovery books just waiting to be shared. I’m delighted to be doing personal coaching again and from this sweet little place. The pottery studio doesn’t fit, but it’s all safely stored for ‘down the road’ but the paints and creative play stuff fills shelves where others might put things like.. dishes, or food.

The last few years have been a knock-down, get-back-up, wild ride… mentally, physically, emotionally, soulfully, and financially.  Wild. Did I mention wild? But being aloft furling sails on a tall ship… well, that will always remind that getting back up includes ‘nothing is impossible.’  And this cabin just happening to be available… reminds me that the Universe is looking out for me.  And now I get  dedicated time in nature to get my creative and career dreams back in gear.  Life is Good. Crazy. Wild. Bizarre. Pretty Amazing.

The whole point of this post? Keep imagining. Make those vision boards. Dream. Trust. Do more of what you love. Take small steps in that direction. Say Yes to opportunities. Know that nothing is impossible.

The Kemo song -If it helps one person find a different way…

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I am back from a most extraordinary adventure. Have you ever had so much to say that you don’t know where to begin so you say nothing? That’s where I’m at with sharing my experience training to be a sailor on a tall ship. I look forward to sharing, I do have notes and sketches to make sure I don’t forget, and I hope you look forward to hearing about it. Its sort of a ‘holy cr%p, if I can do this, then nothing is impossible” experience. Dreams are meant to come true, I know that for sure. Not just for me; for you, for everybody. And there’s other experiences of late worth sharing, like the story people all ‘blindly’ contributed to at our Muse Affair this past weekend… flesh eating beetles and magical folks all included. So consider THAT hint a reminder to me to share that, too.

But here is something I have gotten together to share! I went on the tall ship adventure for the most part without my story of the last almost 2 years of cancer treatments. It was good for me… to attempt to live up to what I thought I could pull off before that story got in the way. But that story as you know, rough as it was, had a tremendous amount of ‘good stuff.’

There’s a young woman, Megan Kowalewski, who is gathering images and videos of people in treatment “smiling, thumbs up, etc.” She created the video of singing through chemo that went viral, deservedly so, and now is continuing to inspire others. So. This timeline for submissions got me to finally put together this video: celebrating the last day of chemo mid June, with the little song that helped me through a year of intravenous treatments. It helped me sneak past terror and even welcome the chemo, (as best I could, with a touch of ‘faking it’) so that it could do it’s job without battling me resisting it! Fun and funny to create this video.. and don’t I have amazing friends? I celebrate them every day.

And here’s a link to original song with written lyrics

The Seriously WTF update

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So, I have a little problem.  The page called “Seriously WTF?” on this blog, where I’ve posted more of the ‘medical’ side of healing from cancer, has technical difficulties. The way I’ve set it up, I can’t add ‘tags’ to help others find it.  I’d like others to find it… those going through treatments for cancer, and perhaps those who support them. I’m hoping that there’s a tidbit or two in there that might be helpful – even if just to know that they are not alone.  And that is why the latest update to that page, I’m also posting here. This way I can ‘tag’ the heck out of it, and trust that if there’s someone out there needing something on that page… they’ll find it.

This post isn’t only about medical stuff,  it has a touch of whine, and a lot about what’s helping… the helping part likely includes you, unless this is the first time you’ve come across my stories. ~smile~ There’s also a great ship.. read on!

June 25 2013  Update

Oh where oh where have I been? Well, honestly… slowly, quietly meandering my way into what is now classed as ‘mildly to moderately depressed.’  I could see it happening as I began the tamoxifen treatments and slowly quietly began getting more and more side effects – with moods being a key one.  My hair all stopped regrowing – another tell tale ‘all is not ideal’ sign. And I was on continued ‘chemo’ treatments of herceptin up until mid June. I’m now finished those. YAYYYYYY!

Whoot whoot whoot whoot!  One year of injections finished! (My chemo buddies and I did something really fun/funny… we’ll reveal that soon.)  Ideally, the finish of that treatment will make the ongoing oral tamoxifen treatments easier. (Oh, and I did have the second reconstruction surgery in March … things are coming along prettily. Very impressed with what surgeons can do.)

So, although I’m aware that treatments and ‘stuff’ are playing havoc.. it’s okay. Supplements recommended by my Inspirehealth doctor are helping tremendously.  Anyone reading this who is in Canada….please consider making Inspirehealth part of your team if you have been diagnosed with cancer. This is the only place I know where there are medical doctors who are experts in what you can take or do, that will not interfere with the success of chemo and other cancer treatments. I describe it as integrative cancer care where western and eastern philosophies meet.  Sooo important.

And all of this is also okay, because I’m staying ‘reasonably’ true to doing things I love even if it’s been harder to ‘feel’ the same amount of joy, rush, and fun. Some days it’s been “just read a good book”  while avoiding other things I love because I’m just cranky. That’s been a hard one through all of this… days where I know I’m just too cranky to hang out even with my precious precious granddaughters.  Oy.

But I’ve also written a little book called “The Crash, Creatively”… so far just for my doctors, but will do more with it, I think.  I’ve played on my paddleboard at Hornby Island with dear muse friends, and paddled and hiked and hit the hot springs in the Rockies. I walk regularly and hike once in awhile. (But Kamloops, cut with all the rain!)

I’m shocked to notice that I may well have become a foodie!  Sometimes I work hard at eating… but I do it anyway, and it’s all good healthy shit stuff.

I’m delighted to have one online course going and am loving doing that, as always.  Onward… small step, by small step. And yes, I sketch, and my paint sketches, as I call them, continue to give me intuitive wisdom about what I need to keep taking steps.  In amongst selling my house and financial crashes…well, I guess I can give myself credit for creatively surviving financially, in addition to so much help from the community last year.

Sounds like I’m doing awesome, when I read all that. Ha Ha!  Okay, screw the cranky.. I’m doing awesome.  But it’s not me that’s the most awesome….

Remember when I shared this when I revealed that I had been diagnosed with breast cancer?

“On this journey,
I will use creativity.
 I will use magic.
I will use laughter.
I will use adavan …
I will hang out in nature
But most of all, I will bask in the love and support
and wonder of those around me
For all of that, I feel blessed.”
The reason I’ve been able to get through this the way I have, is not so much cuz I said I’d do these things; it was because my family and friends believed in me. That kept me going. Thank you for believing in me, even when I have some serious doubts.
And for those I know who are also going through this difficult experience, I sit in awe of you… some are dear friends and some are people I’ve met through this process… some with diagnosis that are really very difficult… well, you all inspire me with your courage, and ways of being through it all. My wishes for happiness and wellness are always with you.
Cindys ship

My Ship – full colour, full sail ahead…. I can do this… with great thanks to my supporters and cheerleaders who believe in me. Artwork by Cindy Hayden, Gifted by her and ‘everyone’ ~smile~

Now I’m trying to kick it up a notch, what with herceptin treatments over. There’s more to get me moving; my daughters have given me a whitewater rafting trip as a celebration gift, – they know how to kick their momma’s butt in gear, and I’m looking forward to that. And I applied for a two week training on a tall ship. … haven’t heard back from that yet, but hoping… won’t that just kick me in gear to prepare! And the reminder to apply for this training ( this was something I was going to do before the diagnosis of cancer) came within moments of another amazing gift given to me.

This extraordinary stained glass ship was given to me by Cindy Hayden, artist, and from ‘everyone’.. yes, that’s what they said, this gift is from ‘everyone’ who have been supporting me.  This is my ship.. full colours, sailing forward, filling me with the energy, passion and “Oh ya, let’s rock this” feeling once again.  So grateful to Everyone! It is such a symbol of how much I didn’t do this alone.

And now?… recreating life…. an overwhelm of ideas  (yes, a little slow yet on bringing those to life!)  and I am healthy and well!  If a little cranky, a little anxious, a little weaker, but this too shall pass.

Play, create, nature, give back, recreate my business,  explore, dream, discover, family and friends and people a priority, permission to keep asking “what will lift your spirit today, Janet?” or “How can you make this fun/funny?”, permission to ask you ‘what will lift your spirits today?” or “How can you make this fun/funny?” (snicker)       ….. life rocks! Even if some of the YO HO YO HO’s are simply a quiet yo ho sometimes. ~smile~

Saving the best news to last… Baby Emaline was born December 28th, a beautiful miracle child, and she and my other two granddaughters, light up my life!!!

~~~~~

For those interested, this is the link to the Seriously WTF? page… where more of the medical type info is.  Also within this blog,  I’ve posted other things about what has worked for me in the category “Healthy Me – A healing adventure.”

If you are someone who is dealing with healing from cancer, on tamoxifen and/or herceptin, and want to know more about the side effects I’m experiencing recently, and what I’ve learned, and other resources, particularly for rare breast cancers… please don’t hesitate to contact me!

Roller Coastering…it’s been a year. (Mentioning cute breasts would be inappropriate)

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rollercoaster2

A year since the original diagnosis … it seems I have so much to say, especially lately,  that I’ve been saying nothing at all. At least, blog wise.  It’s been a rollercoaster.  Funny, for all my adventurous Yo Ho spirit, I really really really don’t like rollercoasters.   So the Ups in my life have rocked… the downs, not so much.  The last couple of months have actually been the trickiest in the whole experience. But let’s start with a huge UP.

Huge Amazing UP:

Glancing through my blog posts, I am stunned that I didn’t find one announcing the birth of my newest granddaughter!! Oh, there are blog posts about the wee Emaline to be sure, but they are on my Gramanana blog, a private blog where I collect thoughts and wonders of these little gals in my life. She is a miracle baby, now 2 months old. We are all so blessed, and I am so grateful for the three little ones in my life who always make my heart melt and my smile smile, as they wash away the other life stuff that can make a person a bit crazy. There is magic in the births of each of my three granddaughters.. stories I do want to share, but keep forgetting to ask their mommies if they are okay with that.

And THREE granddaughters… makes me think we ought to start a rock band or something. Best learn to play an instrument, my voice won’t hold up its end of the band.

And a cranky Down:

I’ve sat quietly as new medications play havoc with my hormones the last couple of months… and, well…. anyone here ever have severe PMS? Ya. Probably best not to write blog posts during the cranky days because it would be rude of me to yell at all of you over something inconsequential which you probably never did anyway. Even my own visualizations are a bit cranky at times. My paintings cranky too.

I’ve not written about how going through the worst treatments was easier than the last couple of months. During chemo, a person has a strong, clear purpose: Get Through This Well.  As I move forward and am physically stronger, (yes, delightedly! Even though still in treatment and despite the added bonus of hormonal craziness), I find myself all over the map on what’s next, on rebuilding my business, and yes, I am selling my home.  Grateful for all the financial support I’ve had.. so very very grateful… and now,  rather than battle debt that’s been building, I think selling is my best option.

On the less cranky days (and they are lessening as I adjust to the treatments) I do remind myself not to be hard on myself … it’s okay to be wavering, wondering, processing the whole rollercoaster of the year.  Given that I just had surgery yesterday as part 2 of reconstruction, and I’m sitting here with ice on my chest… yes, it’s okay to be wavering, wondering and processing this experience and to be uncertain about the direction I’m going from here.   Actually this surgery is an UP… feels like a turning point in going forward.  So inappropriate to mention on a blog  how cute my perky little breasts are, so I won’t mention that.   And despite all this wavering,  I do know a wonderful wild adventure is due and have promised myself that in the not too distant future. In the wavering kind of way, I’m not sure what that will be yet, but it will be. ~smile~ And I do know I will put my energies towards what matters most. That’s part of the tricky part right now.. a lot of things matter most to me.

Wild UP

I finished writing my book… a creative memoire of a 15 year period of my life. Some have  called it a magical memoir. Although not a recognized genre yet, it seems like a good fit to me.   Writing the book has been an ongoing saga in itself.. finishing it feels amazing.  And scary, in a good way. Another round of edits.. and soon, I’ll take the next steps in getting published. It is somewhat hysterical that I did this final rewrite during chemo and cranky hormone treatments. Sentences seemed wayyyy too long, and were then shortened to wayyyyyy too short.  Huge sections were taken out – too much for my mind to handle at the time?- and some will be going back in. But all in all, I pulled off pulling together a very strange book. Huzzah!

More UPs… I’ve been downhill skiing a few times, and with the granddaughters there learning to ski, too, it’s been especially soul nurturing. Actually, now that I think of it, there’s been a lot of UPS. Walking most every day with dear friends. And loving leading the Muse Group Facilitator Training once again. So blessed to be connected to inspiring, quirky, intelligent, compassionate unique people in so many areas of my life.

Another UP.. the synchronicities that say, “ya, you’re doing okay.”   When I was writing this post I wrote this:

“I’m imagining that something pretty cool is going to evolve, now that I have to sell my house and I have no idea what’s next. Yes, sometimes I’m faking that optimism, but it soon trickles into some real optimism and excitement.. and all of that can only be good for my healing. On tamoxifen, I have to fake harder… but I’m getting there.”

This morning, in my inbox was my Note from the Universe, which honestly I don’t get around to opening all that often, but  it’s one of the few sites I haven’t ever unsubscribed from. (Tut.com)  Here’s what the note said today,

Sometimes, Janet, the more joy you fake, the more joy you make.
Same for anything else you might fake.
Smiling upon you with infinite affection,
The Universe

Nice one, Universe. Fake it, Act as if, Imagine… all tools that take things up a notch.

Okay, so I thought this blog post would end up with cranky tendencies… but apparently, in the writing, I can find more UPS than downs.  The rollercoaster above?  I draw random wild rollercoasters on paper, and mark the highs and the lows of  a day, or a week, or a year.  It’s a great way to recognize what really feeds your soul and what doesn’t, and find the way to spend time with the good stuff more often. Also a good way to notice what ‘not so good’ stuff can be let go of, and to remember the Ups will ease the ‘not so good stuff’ that can’t quite be let go of.

Today, I’ll acknowledge myself with some kind of prize for noticing the UPS in this couple of months that has had anxiousness, tears, and crankiness. Russian parahe, I think. There’s some in my freezer….

The Elusive “More”… Altogether now…

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Not a big surprise that many of my conversations with others these days meander around to health and wellness: My health, their health, practising the art of wellness… and the like.

Tonight’s conversation is the same story I hear constantly. Consistently. Routinely. Different twists, but same same. I wish, en masse, I could help the world see things differently… even just on this one habit in our thinking that has been instilled into us since we were children: “I’m not good enough.”

Here’s the conversation:

“…but,” I say, “you’ve looked after yourself very well.”

“No, not really,” she answers.

“You eat well, you walk often, you are doing volunteer work you enjoy and that keeps you mentally active, you are using the skills that are your expertise, you have a social life…” I ramble on. (She’s over 75. She’s rockin’ it.)

“Umm…Yes,” she answers haltingly as she processed what I said, but then very quickly added, “but I could do more.”

Yup, that’s the clincher. Never thinking that what we are doing  is good enough. Never acknowledging what we are already doing well. Always beating ourselves up for not doing some elusive ‘more.’ It is an ingrained thought habit, and wow, is it ever fed by media.

“The only ‘more’ you could do that would help your wellbeing is to stop saying “I could do more,” I suggested.

She snickered and agreed. She got it. I hope it lasts more than an hour before the old thinking habit comes back.

Okay, altogether now: “I’m good enough!”

Ya ya.. I know. First thoughts are all the things you need to improve. Pretty please, just for a moment… can you find one area of your life that you can say, even hesitatingly for starts, “I’m  good enough!”?

Or you could go for the biggie:  “I Rock!”

Me? I could beat myself to the ground for all kinds of things that I have not done ‘perfectly’ in my life, if I listened to everything the media, the ‘experts’, and the foodies say about how I got to the point of dealing with cancer. It’s a challenge enough to keep spirits lifted and manage treatments and keep going forward… can you imagine how hard it would be to be sitting here beating myself up in the process?

There are, in fact, no answers… not one fact… about how I got here. If I constantly drained my energy imagining the elusive ‘more’ I should have done or should be doing, there’d be no energy left to go out and snowshoe, to play with the little ‘uns, to hang out with muse friends, to write a blog post, to work on my book, to paint my tall ships, to find the funny in things, to dance under the willow tree, to make jokes about my Eddie Munster hairline, or even to plan a decent meal. And those are the things that are healing me. Good enough, I say.

(Coming soon to a blog near you: “Finding a less elusive more, if the “I could do more” is beating it’s way to the top of the thought factory anyway.”)

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