My oncologist just confirmed what my GP said.  No movement in my tumors.  Lung spots are still just spots.  I’m still “stable”, holding steady.  He wasn’t concerned that I’d missed a week of the Ibrance.

I went to the company xmas party last night and I’m glad I did.  I got to see people I haven’t seen in a while and laughed a lot and the food was good.

I’m paying for it today. I hurt. My lower back and left hip are sure letting me know they aren’t better. I didn’t sleep well either. My back would give me a sharp jab of pain so I’d roll over then my hip would start. Good thing I’m not going anywhere for the next couple of days. I’m still glad I went.

I get a message last night at 5 pm from my GP’s office.  They wanna see me about my lab results.  I tried calling them back but kept getting their voicemail.  I was stressed for the rest of the night.  What’s wrong with my lab results?  Has my cancer progressed?  Did they find something else wrong? Needless to say, I didn’t sleep well and was up at 3am.

Soon as they were open this morning I was calling them.  The receptionist wouldn’t tell me anything of course but that it was about my lab results.  Crap.  I booked an appointment for 1:50 pm today and had my friend leave work early to take me in.

I get in there, they take my weight, height, blood pressure and he asks me a bunch of questions about my cancer treatment, is it palliative (oncologist listed it as “treatment for palliative care”), who’s paying for the drugs, what’s the treatment plan? How am I managing?  Is it painful? Did I have any other health issues?  No thanks, I think METS is plenty.  Seems they just wanted to get an update on my medical history.  Really?  How does that relate to my labs?  He couldn’t answer that.  I was pissed off!

I did find out about my labs and CT.  White blood count is really low, part of the reason for the fatigue he says.  Tumor markers are up from 60 last month to 65.  No significant growth in my tumor nodules in my left pelvis, right scapula and L2 vertebrae.  I’m still holding steady for now according to him.

I’m supposed to have an appointment with my oncologist today but I’ve re-booked it for next week.  Been having issues with my car.  The battery won’t hold a charge and I can’t get it fixed until Saturday so…no way to get to my appointment.  It should be ok.  I know that sometimes they make you wait 2 weeks between Ibrance cycles so this little upset shouldn’t interfere with my treatment.

It started when I woke up yesterday.  That anxious unsettling feeling.  When I went to get groceries, my car wouldn’t start.  Turns out my battery was dead.  Luckily my friend took me shopping and looked after my car.  (Thank you!)  I wasn’t going to deal with it, I didn’t want to chance hearing anymore bad news, I thought that might be why I was feeling weird but no-o-o.

Woke up this morning feeling the same way and it dawned on me that my oncology appointment is next Tuesday.  And I have to go for bloodwork tomorrow instead of Monday because they’ll be closed.

The days leading up to my appointments are always riddled with anxiety.  I can’t sleep properly, I’m never hungry and I can’t stay focussed on any one thing for any length of time. I want to hear good news when I see him but I also want to brace myself for any bad news.  I’ll know my scan results then too. Back and forth, good-bad-good-bad.

You know when your hand or foot goes to sleep and when it wakes up it tingles and the tingles make you want to shake it?  My left foot has started doing that again.  I say “again” because before I had radiation my foot would swell up when I was on my feet too much and when I would lay down to nap or sleep it would tingle.  It isn’t really strong and it wasn’t then, but I do have the urge to move it around or shake it. It’s annoying as hell.  I don’t know that a reason was ever found for it but I thought, once I knew I had METS in my left pelvis, that it was pressing on a nerve.

I don’t know what it means that it’s back.  I know I’ve been on my feet more this week because I’ve had the energy to do more purging of my apartment and that may be what has agravated it, but it is unsettling.  My next oncology appointment isn’t until the 13th where I find out about my last CT scan.  Maybe that will shed some light on it.

One of the horrible things about MBC is knowing that it isn’t if it progresses, it’s when will it progress.  Every new little twitch and ache and pain makes me apprehensive.

As a person with MBC, I do wonder “why me”.  My mom is a firm believer in “everything happens-or doesn’t-for a reason”.  Everyone has heard “God only gives us what we can handle”.  If you believe in past lives, you get what you deserve.  Having done past life regression, I have a soul that tries to ease the pain of others.

I grew up not wanting children.  I hated playing with dolls, I didn’t have the imagination to give those plastic things personalities and lives and preferred to read or draw.  If it wasn’t an animal, I didn’t want to hold it.  Give me a puppy to hold, not a baby, and I was happy.  I can’t remember how old I was when I let everyone know I didn’t want children, but I knew it right away.

I never got married.  Sure, I thought about it but I could never picture myself growing old with someone.  To that end, I could never picture myself growing old.  I could never imagine what it would be like to be out of my 50’s.

I remember people looking at me like I was nuts to not want to follow the natural progression of humans-marriage, children, old age-but I could never picture it.  I could never see myself in those roles, all I saw was darkness when I tried to envision it.  And it made me feel really uncomfortable to even try to go there.

Taking all of this into consideration, shouldn’t the question be “Why not me”?    Was my whole life a setup for this?  Am I still meant to ease the pain of others?  Will my death result in someone else living a better life?

Getting ready for my CT scan this morning and like everything else in my life that I don’t especially want to do,  I drag my heals and leave home at the last possible second.  This is unusual for me because I prefer to be early.  I got there 10 minutes before my appointment rather than the suggested 15.  Got in there and told her about my last scan fiasco (see pin cushion).  She was careful but did say that my veins go like (insert hand signal for wavy, zig-zaggy) and took her time and got the line in just fine.  Said I should get them to come get her next time I need to do this.  LOL

The only issue today was that the bleeding didn’t stop as quickly when they pulled the line out and I didn’t notice it until I was getting dressed.  The scan reception area didn’t have any band-aids so that I could trade in the blood-soaked cotton.  Went down to the blood lab and they were backed up and busy.  Back to the scan area and they were able to grab one of the CT techs to fix me up.  I don’t like drama, seriously, but it sure seems as if I am not able to accomplish what should be “routine” situations without it going askew  to one degree or another.

I went into work after.  I do miss being there and always feel good when  I visit.  I also know I made the right decision about going on disability.  I was wiped out after and came home for a nap.

…is a real thing.

I have a CT scan tomorrow morning and for me the anxiety also includes the line they need to put in for the contrast dye.  Needles and I have never had a good relationship.  It isn’t that I just don’t like them, they don’t like me either.  The last CT I had 6 months ago, she blew 2 veins and had trouble with the 3rd one then he came out and put the line in my hand beside my thumb.  Ya shoulda seen my arm after.  Pretty blues and purples…

The anxiety is also the wait from when I have the scan and when I get to know the results. My appointment with my oncologist isn’t until November 13th.  Will it be good results?  The cancer has shrunk or stopped growing?  Will it be bad, cancer is still spreading?  I get that I can’t do anything about it till then but that doesn’t stop the mind from creeping into those bad thoughts.

Lately when I’ve done my daily morning body check, the left side of my pelvis feels like it’s calmed down, but the right side has been irritating.  The left side is still stabbing me if I do too much, like the laundry or grocery shopping, but overall, I don’t feel too bad.  I think the naps when I need them and being able to lay down when I need to has helped the stress on my body.

But oh the scanxiety…

Today is National Metastatic Breast Cancer Day and to celebrate it, I’ve been reading up on metastatic breast cancer.  I should say MORE reading up on it.  I guess I keep hoping that somewhere I’ll come across that obscure miracle cure that not too many people know about.  The statistics suck.  2 to 3 years from diagnosis to death is the median and that may be extended with treatment, 5 years if I’m lucky.  As with all statistics, it can be longer and it can be shorter.  For me, I’m going with the median.  It will be awesome if I happen to live longer.

Common themes in articles I’ve read today:

• There is no cure, but there is treatment.  Treatment is meant to prolong our lives. If we are lucky it will slow the progression of MBC and mute the physical pain we feel from it.  Treatment won’t make it go away.
• I will die with MBC.  I will die because of MBC.   Unless I get into a bad car accident, have a heart attack, etc.  which is kindly repeatedly pointed out to me.  I hope(yes-hope!) no one else I know has to wake up every morning wondering if today is the day mBC takes over their body and they can’t function anymore.  I hope no one else has to wonder if the plans they make for next year will really happen.  I hope no one else has to wonder when, not if, their bones will fracture.  I hope no one else has to go through the excruciating pain I’ve had and will have again.
• Few want to speak about mBC. I get that.  It’s hard to talk to someone you know is terminal, but for me, I’ve come to terms with it.  What ever time I have left, I have left.  Ask questions, offer help.  Just be there.  Don’t hide because you don’t know how to act or what to do.  Sometimes sitting quietly is all that is needed to chase the fears away for another day.  I need to talk about it, with friends, with family.  I need them to know that I’m ok and that mBC isn’t contageous  🙂
• You look so good! I love this one.  I may look healthy and normal till the day I die.  I’m glad I look good.  I’m glad the cancer is internal.  Sometimes I wish it showed on the outside, but really, I’m glad it doesn’t.  Take my word for it.  I’m terminal with side effects from the medication but I can hide those for a short time.  I’m glad I look good.

Mom and I had a couple of conversations about it while I was visiting her.  One of them was that they may come up with a cure for me and I shouldn’t give up.  I haven’t given up but if they have found something it won’t help me in the time I have left after clinical trials and everything else that goes into allowing a drug or protocol to be approved.  I’ve accepted my situation which is the best thing for me.  Don’t get me wrong, it sucks that I have this and I really wish I could blame it on something or someone but I can’t.  Until they know what causes it, there won’t be a cure.

The last couple of days I’ve tried to find other MBCers who have online journals that I could follow but so far I’ve found far more of people who have passed away from mBC than people who are still alive.  That’s sad. Really sad.