(If you’ve been here before… the latest update can be found by sliding a ways down this page to the purple header November 2014 Update)
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…
All began February 2012
A suspicious mammogram.. led to a biopsy.. led to a diagnosis of DCIS: a non-invasive type of cancer.
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.
ps. The adavan is for the times the ‘f’ word events keep me up at night.
Although, melatonine is working now.
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.
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 definately 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?
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. 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.