This time last year I was on a cruise to  Alaska with 8 members of my family that included my mom and my sister.  Alaska was one of the handful of things that was on my bucket list and I was so grateful to be able to go. The pain in my hip had started about 3 months prior to the trip and I wouldn’t find out what was wrong for another 2 months but I didn’t let that stop me taking the trip of a lifetime.

I was in severe pain.  I’d been to my GP numerous times and he’d put me on nerve blockers because x-rays didn’t show anything wrong.  He’d tried to get me in for an MRI but they declined his request.  I didn’t have a cane yet either.

Walking the ship was a real chore.  Trying to balance against the flow of the ship and not bump into other passengers took a lot out of me.  Going upstairs every morning for coffee was a huge accomplishment.  I know I was grumpy and I tried not to be but it was hard.  I even went to an acupuncturist on the ship.  That helped for an hour or 2.

I remember a few things really well, still.  The bear excursion.  Loved seeing the bears up close and not caged.  The bald eagles being smaller than the ones we have here.  My sister teasing the restaurant help, this was always entertaining :).  Yelling at my aunt when she went to push me to get me to step backward, and feeling bad about it afterward.  I knew I’d fall if she did and that would have been very bad.  Having to push my mom in her wheelchair for a very long time back to the ship.  I thought I was going to pass out from the pain when we finally got there.  The towel animals!  We didn’t have any for a couple of days, I asked the room attendant about it and we got 2 or 3 every day after.

I wouldn’t trade one moment of this trip and the memories for anything.

It used to be when I had a scratch, either from the cat or just my own clumsiness, it would go away in a few days.  Bruises were never a big deal.  Rarely did they go all purple and show up really ugly.  They seemed to be really pale and again they’d be gone in a few days.  Boy have things changed.

I have a cat scratch on my toe from 2 weeks ago and you can still see it.  They bruised me on the 3rd when they took blood and the bruise is only now starting to fade.  And it was ugly.  All purple and green.  That’s almost 10 days.  This kind of change in my system kinda freaks me out and is a big reminder that I’m on some heavy duty drugs and my body isn’t the same one I had 2 years ago.  I’m definitely more careful doing things than I used to be and try to avoid cat scratches when possible.

I know that my neutrophils control infections and thankfully I haven’t had any but do they also control the speed of healing?  I’ll have to ask the oncologist next month.

So my blood work wasn’t ready for my oncology appointment.  He is keeping everything the same anyway for now. I’ll see him in 8 weeks again.  Oh!  And no CT scan this visit.

Interestingly tho, we talked about my numbers from last visit.  My neutrophils are still way low which is expected with Ibrance but my tumor markers were also up to 80 from their usual mid-60’s.  They were also the readings from when I missed a week of Ibrance.  Now I know what will happen if I stop taking it all together.  Kind of scary weird when you think about it, how well it’s working and how it’s going to be when it stops working.

For some reason I’ve been thinking about this.  A lot.  You know those would you rather questions like:

Would you rather live without the internet or live without AC and heating?

Would you rather thirty butterflies instantly appear from nowhere every time you sneeze or one very angry squirrel appear from nowhere every time you cough?

What I’ve been thinking is would you rather be hit by a bus and die instantly or get terminal cancer, knowing you’ll probably die in the next 5 years but don’t know exactly when? 

One of the conversations I tend to have with people is the bucket list one.  That I should do my bucket list before I can’t anymore.  I should do all the things I want to do before I die.  My question to you is, why wait until you have a terminal illness to really live your life?  Why is that the guage we use to say “Ok, now I need to do all the things I’ve wanted to do.”

Life is for the living.  Make the memories before you have a terminal illness or before you get hit by a bus.  Make them now when it matters, not as an afterthought to the end of your life.  Make them while you still have time to look back on them, not when time has run out and they lose their significance.  Don’t put things off because “there’s always next year”.  You might not get the chance to have a next year.

A year ago I did my last shift at work and left on disability.  The decision to do that took me months to make.  I loved my job.  Was it the right thing to do?  Couldn’t I suck it up and keep working?  ..through the pain and the fatigue and the endless appointments…  One morning I woke up and thought, who am I kidding?  Me working wasn’t doing anyone any good, including me.   So I took the steps to leave.  And I was devastated.

After I left, for about the first 6 months, work was the second thing I thought of when I woke up, I’d do a body check, make sure there wasn’t any new aches and pains then think about work.  Some days I felt guilty because I thought I could still work, I should be working.  No one could see the cancer growing in me.  I still looked normal.

A year later, I know I made the right decision.  My brain doesn’t always work fast enough, especially if I’m stressed or tired, and I can’t sit in one place for too long or my hip starts bugging me.  If I have something to do that I need to concentrate on, even something as simple as my crocheting, I try and get it done before noon because after then my brain doesn’t behave and I get real tired real fast.  Most days I am napping by 1pm.  If I don’t nap I rarely stay up past 9pm.

Back then, I still hadn’t really come to terms with having MBC. I didn’t want cancer to defeat me and a part of me thought if I continued to work, I could stave off it’s progression.  Thought processes can be weird sometimes.  Don’t get me wrong, I’m still fighting the progression,  I’ve just come to terms with the fact that I’m not “normal” and can’t have a “normal” life and do all the things “normal” people do.   I have to constantly make adjustments to appear normal.  I don’t want to use the “cancer card” and so far, outside of my family, I haven’t had to.

It’s been a year and I  still miss work.

I’ve always liked butterflies.  When computers were new and Windows 3.1 was THE operating system, I used the nickname “Butterfly” when I chatted.  I wanted butterflies released at my funeral or wake or whatever I decide to do when I die, but they only sell them between May and September from what I’ve researched.  Can’t really count on that…

Today a friend took me to Krause Berry Farms & Estate Winery (the waffles were awesome!) for their 6th annual butterfly release.  The money is donated to the Langley Hospice Society so not only did I get to release a Painted Lady but it is for a good cause.  Too bad it was raining or I would have stuck around longer to take pictures of them.

Breast cancer is curable.  You get an end date for your chemo, radiation, pills, the bad side effects go away, and you get to go on with your life.  There’s a light at the end of the tunnel.  People are happy for you.  There’s fundraising for breast cancer.  It really sucks, don’t get me wrong, but you know it’ll be over.  You’ll be cured.

None of that happens with MBC.  Treatments go on until they don’t work anymore.  Some of us have chemo again, some of us are lucky to take a pill. Most of us have radiation for pain management.  I did.  Side effects are always there from whatever treatment we get.  And they stay.  They don’t go away like they do for breast cancer.  They stay.  Foggy brain-I hate losing my words and I lose them more if I’m tired or stressed or excited.  Fatigue-am I really this tired when I just woke up 4 hours ago?  Can I stay awake past 7 ot 8 o’clock?  Pain, joint or at cancer site-most of the time I don’t have ongoing pain, just a nagging reminder of where the cancer is with a poke every so often, other times the pain stops me in my tracks ’cause it isn’t just a poke but a full on punch. Loss of appetite, trouble sleeping, dry skin, thinning hair, nausea.  Hot flashes, night sweats.  Oh, then there’s the low white blood count.  The blood tests, the CT scans.  The list goes on and on.  I plan my day around my energy and pain levels.  There’s no fundraiser for MBC.    There’s no end to the treatment or the side-effects.  Eventually the pain will be back as bad as it was before.  There’s no light at the end of the tunnel.

People feel sorry for me, they don’t want to be me.  They don’t want to imagine being me.  They aren’t sure how to talk to me or act around me.  People don’t want to talk about it because it’s a scary thing to talk about a terminal illness with someone who has it.  This sucks really.  I’m still me.  I’m not strong, I’m not courageous.  I wasn’t given a choice.  I just do what I need to do every day to hopefully beat the statistics of this wretched disease.  Sometimes I’m jealous of people who “just” have breast cancer.  I have days of sheer terror of what is inevitably going to happen.  Occasionally I feel sorry for me.  Most of the time I’m just mentally and physically tired.

 

Had my two month visit with the oncologist.  I ended up taking 2 weeks off of Ibrance instead of one because they’d booked my appointment wrong.  He knew by my bloodwork.  My white count was normal.  I told him they’ve done that once before but I caught it, this time it was too late for me to change the appointment when I figured it out.  Here’s hoping it doesn’t screw me up.  It shouldn’t according to him but it messes with their records I guess.  Oh well, giving me the wrong date for my appointment wasn’t my fault, which he readily admitted.  I’m going into my appointments knowing when the next one should be now, even though he’s taking all the blame.

He mentioned a cyst on my kidney and that they were muddy.  Wait, what?  What cyst on my kidney?  Apparently I’ve had it since the first scan and they’ve been watching it.  He doesn’t think it’s cancer.  ??  I asked him if there were going to be any other surprises.

I saw my CT scan for the first time ever.  Saw the cancer in my scapula and my spine, didn’t get to the one in my pelvis.  That was kind of interesting, to see what’s eating away at me.

We also talked, again, about me not wanting to take the pain meds.  He’s concerned I’m letting this stop me from doing things.  I’ve assured him that’s not the case, I’m not a real active person normally, and I’ve started packing the pain meds when I go on outings that I know are going to be out of my comfort zone physically.

I’m still considered stable.

Had a GP appointment today too.  I’ve asked him to refer me to someone I can talk to.  I need help at this point.  Can’t do it by myself anymore.  I’m getting really depressed and “comfort food” eating as the GP called it, along with the anxiety/panic attacks and just your general down in the dumps.  He says someone will call me.

 

 

Turns out my aunt more than likely does not have cancer again.  The radiologist was asked to look at the films as if she didn’t have cancer before.  This is good news but a horrible scare.  She will still have a bone scan.

As much as I don’t like having MBC, I would prefer to be the only one in my family that does get it.  We’ve had enough death and tragedy.  We don’t need more.

Makes you wonder how many false alarms there are.  Do people have cancer treatment without having cancer or do they dig deeper, biopsies, more tests etc to confirm their diagnosis?

Cancer seems to love my family.  One of my aunts found out today that she has cancer in her hip.  A tumour, metastatic, bone, not sure yet.  She gets to go to the cancer clinic. She had a CT yesterday and has a bone scan scheduled.   She had breast cancer in 2014 and was “cured”.

Will this ever end or will cancer just keep picking away at us?