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.