SHIT'S GETTIN' REAL

This is a long read.... so much to say.  Brain may not behave enough to say it. My ability to be concise and write well feels impaired so please be patient. I am sharing  because I'm scared as snot & just can’t handle it myself any longer.

It was a dark and stormy stairwell & the dogs were desperate for breakfast so I went downstairs to feed them. Shit happened. I thought 6 steps was 1. Third concussion in a year.

This one hung on and rehab didn't help. Two weeks later, I made it to Toronto for an advocacy workshop with Rethink Breast Cancer, Gordon clan visit, brief introduction to a new pre-baby…plus I was blessed to meet soulful artist & dear “virtual” friend, Teva Harrison. “In Between Days” is a graphic (as in art) book about experience with MBC. This resonated with me: https://thewalrus.ca/three-ways-to-disappear/

I finished my masters course (NOT whole program) in April with highest mark on paper and in class. Every time I’ve have a concussion, I kick ass. Huh?  Then to CADTH symposium in Ottawa end of April because of my friends at www.mbcac.ca and a generous travel grant from CADTH. I laughed/cried/got advocate-angry with another mets mentor, Sharon MacNeill. I lunched with my new "kindred, nice & edgy” friend MJ - kick ass ED/Founder of Rethink Breast Cancer.

A tough recovery week. Headaches through the roof. They got worse no matter what I did. I noticed my blood pressure jumping about wildly. Went to ER - CT scan was fine. My aunt and cousin from Holland were in Peachland so I “sucked it up”  and Jeff made a visit happen. Back at home, I noticed light-headedness when standing. I obsessively measured my BP. It varied by 30-70 mmhg so I called the BCCA ivory tower.  Nurse didn’t seem to think a big deal but called back to tell me ECHO had been ordered.

I could write a book about the trauma of WAITING in cancer….

I waited. And waited.  Sechelt hospital called me a week later. Umm, that’s a 4-hour trip with ferry. Clerk says, “Sorry it’s been on my desk a week and I’ve been too busy to call you.” I asked them to forward to Squamish; they told me it would take a couple of days. I called chemo angel #5 (methinks this one is going to be staying around awhile).  Squamish can’t do. Called BCCA. They said they’d send to LGH. Phone rings at 7 am the next day. VGH has an appointment for me at 2. But wait, could I “call the BCCA and get the requisition faxed?” Umm…is that MY job & how did they book it without? On the way to VGH, I called BCCA & was told there wasn’t an appointment at VGH. They’d sent to LGH. Huh? Called VGH & yup it was there – “BTW could you please get the form faxed?” Again… We arrived 20 minutes late. Lineup at check-in including a stretcher, stressed spouse & two attendants.  Clerk asks for requisition. Ugh. I tried…45 min later I have my echo, stressed/flustered; blood pressure 120/70 under duress. Return home.  Next morning phone rings. LGH to book me for an ECHO. They tell me no record of VGH ECHO (same electronic system). Call BCCA who also says no record. Call LGH to cancel it. Chat with unit clerk manager. They apologized but I later found out Dr. DB asked for it to be sent to Sechelt.

I wait AGAIN. Chemo angel #5 calls to say there’s no record. I wanted to make sure I was safe to fly to Calgary (I needed to keep living). GP locum ordered chest x-ray, labs and requested ECHO results. All good. Hmm.  They referred me to internal medicine in North Van. I call BCCA again and they tell me about stress and blood pressure. Are you kidding?

I went to Calgary for peer support group training with the Canadian Cancer Society. I travelled, rested, attended, rested, slept. Another great experience. A gift was a pen with logo and “The finish line is in sight.” Umm, really? That’s a bit morbid in my case.  Met another awesome “nice & edgy” NGO leader.  Badgered them about inclusive gender terms. I met another soulmate over “radiation & dogs” and dislike of the term “survivor.” I’m keen to get a support group going in the fall for diverse folk with all cancers, all stages…. god wiling.  Returned home after a visit with my fave “virtual” classmate in Calgary.

Another rough week. Finally went to see locum onco. More questions than answers. The student doctor was onto something but their mentor disagreed.  Told me to continue chemo & that it was nothing to do with cancer or treatment. I felt invalidated and diminished. I was referred to psychiatry to review “side effects.” Hmmm. I asked (demanded) re-referral to the neuro-oncologist. But no tests/scans other than a cortisol level – which was my idea. I bought some pressure stockings & abdominal binder. I started drinking 3-4 litres a day of electrolytes (helps BP issue).

I’d had enough and I was going to FORCE myself to stay up longer each day – Jeff suggested I OT myself. I went for a walk. I did homework. Father’s Day dinner was a disaster. Thanks to over-reacting & fatigue… I realized it was the first Father’s Day without my dad.

By Monday I felt the worst EVER. WHY did it keep getting worse? All I could think about was how brutal my Q of L was. This time last year I was running ½ marathons. Acing school. Advocating. Volunteering. Now I can barely stay up 1-2 hours a day. Whinged with chemo angel #5. Discussed playing “the game” and showing up at ER. They suggested city where they have an MRI. Idea overwhelmed me. Took a shower – a monumental effort. I fell onto the bed taking my BP - 67/55 with a heart rate of 135. That’s it – I packed my overnight bag and went to the ER. Chest pressure, BP issues & SOB gets you past triage…. but nothing measurable gets you sent home. I’m hydrating A LOT, wearing stockings & binder so my BP not so low.  A little TLC. Thankfully it was Dr. McDreamy (I may have had a hero-crush on them years ago like I do Dr. Tequila).  They were the doc that sent us to St Paul’s to have our first, the doc to treat me when I hemorrhaged a bit after Bina. And Lucas’ first doc - stopped 8 hrs of ear infection screaming in one second even though his office was closing.  Suggested trip to city would likely result in me lying on a stretcher in a hallway for days & getting nothing. I’d sleep better at home. So home again home again jiggedy jig. 

A strange thing happened at ER. I felt like I was “tripping.” My speech was slow, took me long time to answer, felt confused, sounds too loud, lights too bright. Felt dissociated. Went away when I got home. Another hmmm.

Wed rolls around and my appointment with the internal med specialist. Does one say internist? New docs are “interns?” Got lost. My fault. First, I deleted the address. Second, I searched incorrect address online. Third messed up street number. Finally there - I’M AT THE WRONG PLACE.  Fourth, I get new address wrong when I call office – street doesn’t exist. SOS. Fifth, I confuse east & west. I’m 25 min late & Superman isn’t impressed. I add cognitive deterioration to my issues. Dr. Beach reveals Dr. Tequila was just ahead in med school, “Diego’s great.” OK I like you. Does physical.  Listens, is curious, collaborates, strategizes, agrees its cancer/chemo related…NOT anything to do with antidepressants. Why psych? Reads me Dr. DB’s notes.  Asks why they didn’t order new scans, MRI. I shrug. They can’t do it. Confirms my adrenals are working fine. Says I show signs of marked dehydration. But I’ve had 2 liters of electrolytes by then. Feels it’s hypovolemia but doesn’t know why. Suggests a gastro referral with barium swallow - I’m not absorbing liquid. I need to drink MORE. And eat MORE. But makes me nauseous or vomit. Doesn’t have anything to offer except more questions so off I go….to wait some more. Thankfully I felt like a patient-as-partner this time. 

Stopped by Davies and bought a walker. Ultimate Salesperson (worked with them 15+ years) doesn’t recognize the freaky person with eye patch, floppy hat, stockings and poles. Then does. They've seen  my blog…so I don’t have to say much. Sets me up with a walker. Ugh...but it’s nice! 

Thurs is chemo day. Neighbour Linda takes me & lovingly does all the shopping for Bina’s bday party because I’m held up getting fluids.  Chemo angel #2 (colleague/friend) is on with Dr. Miracle. They delivered Bina like a “midwife” and then survived deadly cancer – two kinds. Asks me if I’m NOT driving anymore. Hint. It’s OK – we decided that Monday. My rehab team brings me sock aid, reacher, grab bar and GO chair. It’s a scooter/power chair hybrid that can be broken down & put in a trunk. Go big or go home. Always wanted one of those power chairs I demo’d with my patients. Whistler nursing dropped off a bath stool. It’s a home care OT's Disneyland in my house. 

Friday & I still feel shitty. The cognitive stuff - very frustrating.  But the show must go on. Bina had a bday party planned. I knew it would be darn near impossible & waiting wouldn’t help. So I hired someone to help. The help and company saved my ass. xoMM

OK I’ve decided it’s time….to call in the troops. Physio sent me a home program to do in bed until I am scanned and OK’d to move on. So far, any activity has set me back. Friend arrived with some gently worn long easy dresses that hide the stockings & some trendy footwear. I’m a fashion stick-in-the-mud – I embarrass my 13 yo. Then a neighbour and friend come by to plan out a ramp. Yup – I’m at that stage now. Lifting the walker up the threshold felt Herculean. The power chair?  I contact strata and lickety-split, I have approval for a ramp.

This is where superman hits the wall. WTAF? If I don’t keep doing stuff, I’ll just keep withering away. I explained it will save energy & allow me to get out on my own. I’m tired of "sucking it up." It no longer serves me. Jeff quickly understands….and realizes it’s come to this. Surfing the web at night I find Tequila’s email address. Jeff says “Just send him an (expletive) email.” Tequila’s not an “email with patients” kinda doc but I need to ask for someone to DO SOMETHING. I feel Dr. DB has washed their hands of me.

Then I find something interesting. A related link pops up on Google… Dr. DB had triple neg breast cancer in 2005 then mets in 2006 before they went to med school. All over web because they are pretty damn inspiring. I don’t know details, but they are one hell of an outlier. But then why would they seem so uncaring & believe it’s nothing cancer? Not every oncologist comes with bedside manner. Perhaps I triggered something? Has own issues? Maybe just doesn’t like me?  I estimate only a few years into practice & is a researcher; I watched their video of a research presentation on MBC. New HCP’s want to be perceived as “expert” and may not appreciate patients informing themselves. When it’s not your first rodeo, you realize how little you know & find out patients ARE experts. I’m hoping to have an honest chat, agree to disagree, wait for Tequila or try someone else. Then enlist a new ally for www.mbcac.ca as a clinician & researcher. The combo of personal and professional experience could kick some advocacy ass…. if they aren't my onco.

It Saturday now. I’ve shared the situation with my neighbours & stuffs a’happenin…. Rides, meals, building ramp, home mods with Master Luke. Superman set up bathroom. Installng extra railings & motion sensor light on stairs. NO MORE CONCUSSIONS.

I went to GP #2 Sat am. Thank GOD they took action – referral for CT & MRI in place. They’ll follow up on what internist sends. Compassionate but honest. Sounds like cancer brewing. Or “terminal toxicity” from treatment. Yes it’s all scary. Reminded me that my status and Q of L now is the norm for many. My ½ marathons, education, advocacy & volunteering were NOT the norm at year 6. By 90 rounds of chemo & so much cancer, most aren’t here or are bedridden.

A few of us thrive. Most don’t. 80% still die by year 5. I’ve been so damn privileged, ableist & feel I’ve let down my tribe. I didn’t really understand what they were going through with progression or intolerable side effects. Stage 4 needs SO MUCH MORE. It should be 80+% thriving at 5 years. F that article that came out to say mets are living longer. First, an extra 2 months is NOT humane & second, at what cost? Full disability? Dear mets tribe – from the bottom of my heart – I am deeply sorry if I wore the badge of NED in such a way it upset you. I’m just starting to “get it.” Yes, my SE were brutal for a targeted therapy but at least I could do shit.

 I don’t blame pharma or the system. Innovation has given me years beyond median survival. And hopefully, more. I STILL have options. I heard of a HER2 patient who takes Perjeta for 6 months, takes a 6-month break, then resumes. Don’t feel I can discuss this with Dr. DB. Notice – I can’t bring myself to call them DenBitch anymore – they are in MY TRIBE; whom I advocate for. I give them full benefit of the doubt. Plus – if it’s my time, they can continue to carry the flag. I know they're deeply involved in research to improve outcomes in mets.

We can also hope and pray it’s an autonomic neuropathy like POTS. Apparently 80-90% have measurable cognitive deficits so it wouldn’t be unheard of.  I have peripheral neuropathy & my protocol is still so new – it’s NO PERSON’S LAND.  First in Canada (maybe world) on this protocol out of research. Even the trial folk might only have a few years on me. And no-one is following them anymore. Most have moved on to the next lines of treatment.

The elephant in the room is more cancer –  50% of HER2 metsters get brain mets. But 50% don’t. The glass can be half full or half empty - both valid.   I can’t deny that this is foremost in my thoughts. CT miss them sometimes as per my HER2 circles.  I am trying to distract & move forward. But I need to prepare for the worst and hope for the best.  I’m working through setting things in order. And advanced directives. It might be soon; it might be years. But it makes it easier for everyone.  Please don’t deny me the reality of my situation. It’s going to be tough – now or later. I need to share. And reach out. It has already made ALL the difference to be able to call on everyone again.

The last year or so I became very cynical. Deeply  “non-clinically” depressed & isolated at times. I’ve also had some great moments. But I’ve made it tough for my family & friends. SORRY.  I thought most non-cancer people unfollowed me on social media and really didn’t care. After 3 concussions in one year, death of my ex-bro-in-law & dad & fear of brain mets last fall, I was exhausted and angry - I thought few noticed or were tired of the negativity. One issue was a FB setting which prevented people from posting/seeing my wall. DUH.  I imagined people ignoring me, thinking I was a bad friend, and self-obsessed.  I felt my IRL circle had shrunk down to a handful of friends, my family & my mets tribe. I am partly to blame – I withdrew & harboured resentment. I can’t go out  very often. Sometimes I will but I’m not consistent & trade-offs can be unbearable. I now know there are many more people than I thought deeply invested in my well-being. I tried listing but it got too long.  Special shout out to the #metsmafia….. And superman of course, “Not going anywhere. This is our life. This is what I signed up for.”

Despite it all, life continues. I might be with walker or wheelchair for the rest of my life. I might need to call in home support. I might be a serious lounging armchair advocate watching daytime TV and eating bon bons. We’ve still planned a trip to Ontario in July to see SIL from SA. We are heading to the ranch this year with kids and partners. I’m banned from riding - by superman & muscles. I’ll lounge and build up the energy for awesome margaritas.  Dad’s remembrance in Sechelt in August with my sisters & nieces/nephews. School starts again for me in Sept. Support group. BCCA patient engagement committee work – starting Monday. Advocacy. Addition of a new concussion group member; Baby Jana – we need more Janas in the world. Another concussion group in the fall… I’ll keep trying to live while I can. 

This is certainly a difficult time. It’s been one hell of a long 6 years and MBC is lonely.

Right now lots of tension. Kids struggling. I’ve NEVER been this afraid – of either a brain progression or just having to live with my limitations for eternity. I ask for your support and patience. Cut my kids some slack. Make sure they are doing fun & happy things. Praise superman for all he does. Take him for bike & beers. If for some reason, I don’t get around to thanking people for all they have done, are doing, will do, THANKS…….

People are asking “what can I do?” I’m going to work on a list of things we need help or support with. Maybe try a website. Meal train is in the works. 

Love you all