My shoulder is still sore.  Not nearly as bad as it was, but it’s still annoying me.  I have a CT scan scheduled for the 17th.  Yup, it’s a Sunday.  Who knew they did these on the weekend?  The hope is no progression.  The fear is progression.  I won’t find out the results until the middle of March.

My hair is thinning.  Oh, not so you would really notice, but for months I’ve been shedding more than “normal”.  I brush my hair before I wash it but a whole lot still falls out.  My hands get covered in it when I wring my hair out.  It’s about as bad as pet hair.

I can only sit, recline, stand for short periods of time then I have to switch it up.  I am really uncomfortable after going shopping or to my appointments.  Sometimes if I’m not paying attention to how much walking I’m doing, my hip will send me a sharp jab to remind me the bone mets are still there.  These kinds of days cause a whole lot of dull aching for hours.  Some people might call it pain, but my pain tolerance is pretty high so for me I rank it as dull aching. A 5 on a scale of 1 to 10.  Doing stuff 2 days in a row is exhausting.

Usually by about 1pm my energy is sapped and my body aches and I need a nap.  If I don’t have a nap my energy level for the rest of the day/night is just not there.  I try to stay up until at least 10pm now.  I am still waking up early.  I’ve always been a lousy sleeper but some nights I’m waking up every hour.  Some nights I’m wide awake at 3 or 4 am, get up and putter around and try to go back to sleep.

Food just doesn’t interest me anymore.  Oh I eat.  At least dinner because I need a full meal to take the drugs I’m on, but rarely now do I eat something and thoroughly enjoy it like I used to.  I miss that.  I can’t seem to make food taste better than average. Even the Take-Out I get is just average.

Being tired all. the. time. is the worst.  Things don’t get done for days like laundry or dishes because I just don’t have the energy.  Used to be I didn’t do it because I didn’t want to.  At least now I have an excuse :).  Being tired all the time messes with your concentration.  I crochet.  It relaxes me and keeps me occupied and have a couple of projects going at all times.  One that needs my full attention and one that is mindless. I can tell after a row if I’m going to be able to do the full attention one.  Driving can be a real chore when you can’t concentrate.

It would be nice if all these little things took turns each day but they like to all play together.  I guess they’re less lonely that way.

 

Cindy Robillard Barka posted this in a facebook group today and she has allowed me to repost it here.  What’s it like to live with MBC?  She says it so well….

This isn’t a rant so much as a group of random introspective thoughts coming together hopefully in some form of cohesion.

I read a lot, and I read a lot of cancer pages, comments and life stories especially here online. There seems to be an underlying need to glam up even the most dire of stories. “While single mom Sadie is suffering with multiple fractures and a fight with the provincial government over access to drugs she lives a full life or Maria is not defined by cancer she’s taken up skydiving and started her pilot training.”

Chances are Sadie’s full life is full of mundane things like struggling to look after her kids on days when she’s exhausted or wondering how she is going to pay hospital parking again. Yet, these everyday occurrences are glossed over with the fact that she volunteers once a week or took a trip last spring. That’s a lot of hours of living with cancer’s impact in between her “full life.” Setting out to achieve life goals, while very admirable, in a short and hurried period of time, is the epitome of being defined by cancer. Who else has to, wants to, needs to, achieve so much with a doomsday clock ticking wildly in their ear?

So why do we still feel like we have to achieve when we have metastatic cancer? It is very likely that if you have metastatic breast cancer you are a woman and as such the societal norms we see in every day life still impact you. There’s a desire to be a good and present parent, partner, sister, aunt, daughter or even patient. Not to complain in mixed company (those living with metastatic cancer and those without) because you don’t want to draw too much attention to yourself or become the Debbie Downer at the party and heaven forbid become the object of pity. (Pity versus compassion is another story for another time.) Not to mention that tick tock, tick tock. Suddenly all the “I’ve always wanted to” become “you better get to that” before it’s a, “never going to be possible.”

We also carry a burden of being “fine” because to truly be honest we would say I’m not well, I’m tired again or I’m still tired. I’m in pain both physically and emotionally. I don’t want to have a positive attitude and shove your article about a new cancer cure up your ass. Don’t you think I’m following every angle? I’m angry and I hurt. I hate that friends say stupid things in the hopes of being supportive. I hate that your, “how are you?” feels like an intrusion into my inner self. I have nothing to look forward to except this getting progressively worse and the things that once brought me great joy have faded. Instead we say “I’m fine” because having people avoid you, interrogate you or not invite you feels worse than saying “I’m fine.“ (I hope we all have a support that doesn’t make us feel this way.)

The isolation of cancer builds as acquaintances, friends, family, colleagues, former sport team members fade away after weeks, months and years of this disease and it becomes disheartening. ‘I’ll call you sometime’ or ‘we should get together’ or better yet, ‘thinking of you’ become pat phrases and yet you never quite become inured to the pain because those phrases flash a light into your cancer isolation.

If you’ve been fortunate or unfortunate enough to live much longer than expected you remember every time you’ve asked for help, for a drive, for company and you start to worry about the toll your illness is taking on those around you. I can’t drive to my appointments this week, I don’t feel up to cooking, I’m in pain, I need emotional support again, I have nothing left inside to give this week, I know I was fine an hour ago when we made plans but I’m sick now, saying these things again and again over the years becomes a silent burden that you know you are imposing on others whether they say anything or not. You feel it.

I’m strong, I’m brave, I’m a warrior…NO, I’m not facing this with courage I’m facing it the same way I faced every other obstacle in my life. I’m still me. I didn’t suddenly put on my big girl panties, I’ve always worn them. The “challenge” of somehow living and not just existing with a death sentence isn’t brave it’s called living. I don’t want the burden of being “strong” because it’s a box I choose not to live in so that you might feel comfortable with the downs of my illness.

Struggling to get a diagnosis, make decisions, track down medications, advocate with insurance companies, deal with side effects, negotiate finances, take care of family, deal with pets, keep house, get groceries, the overflowing sink, the sick family member all seem to have a cumulative weight when you have cancer. Some days and sometimes some weeks, all the little things become an obstacle to surmount. Nothing is easy. Doing dishes with a fractured pelvis. Making numerous phone calls trying to coordinate appointments while your stomach is roiling. Tracking down prescription refills for the 50th time in seven years. We understand what, ‘I’m tired means’ even when you just woke up.

We straddle a very uncomfortable place where We have to take advantage of every moment and yet plan for a possible future.
Do I spend the money and enjoy today or save and maybe buy something nice next summer? Do I indulge and eat the cake and pizza or do I abstain and think about the impact on my health? A friend recently said to me, “I thought I had more time” just before she passed. When this disease comes for you, despite it lurking for months or years, it can come fast. We’ve seen it over and over again and so we straddle.

I’ve had a bad case of the panics today for most of the day.  I had to go to 2 different stores to shop and I’m not even sure how I got there or how I got home.

I’ve been pretty good with these lately, they’ve been staying away for the most part but I dunno, today they were back in full force.  I couldn’t concentrate on anything for more than a couple of minutes, my body felt all vibraty, I was hot one minute and cold the next.  All day long I’ve been on the verge of crying but for some reason I won’t give in to it.  One of those days where you should really “phone a friend” but feel silly doing that because you can’t really explain what’s going on, just that you aren’t …right…  I’m exhausted.

Geez I hate days like today and they happen far more often than I’ll ever admit to anyone.

I’ve never had a problem talking to people about my cancer.  Knowledge is power and I’ll answer any questions they have if I can, but seriously.  Sometimes you just gotta shake your head and walk away.

Her (she’s in her mid 20’s): How do you get Cancer?  Can I get it from hugging a stranger?
My inside voice with an internal eyeroll: Are you kidding me?!
Me:  No.  You can’t get it from hugging a stranger.
Me walking away…

Same person, different conversation.

Her: I read that severe stress can cause heart attacks, strokes, seizures and CANCER!
Me:  I don’t think it causes cancer…
Her:  But I read it on Facebook!
My inside voice:  So then it must be right!
Her:  What about the other things it said?
Me:  Maybe.  I can see it happening if you aren’t healthy.
Her:  What do you mean by healthy?
Me:  Diet, exercise…
Her:  Oh.  But I’m under severe stress ALL the time!
My inside voice:  Yelling at your 3 kids can do that to ya.
Her Mom:  What are other causes of cancer?
Me:  It’s usually environmental or genetic.
Her Mom:  What do you mean by environmental?
My inside voice:  Seriously?
Me:  Things like smoking, asbestos…
Her Mom:  What’s asbestos?
Me:  They used to use it in insulation…
Her Mom:  Oh

Me walking away…

Saw the oncologist today for my followup. My numbers haven’t changed, “white blood count is still low but not to the point where we take you off the medication.”

I told him about my shoulder pain. I woke up in the middle of the night Thursday in real pain in my shoulder. It’s still sore today so he’s sending me for another CT scan to be safe. “It is one of the areas of cancer from the original diagnosis. It didn’t show any changes on your last scan but lets get another one anyway. It’s been 3 months since the last one and nothin’ says there’s a time frame on when you can have them. It could just be a pulled muscle…..” Oh goody. Another CT scan. Another chance for blowing out my veins again. I don’t see him again for another 2 months so unless they call me in sooner because of something horrific on the scan, no news will be good news.

I asked him about the dental work. He isn’t concerned but is glad I’ll be going to a specialist. He said we could take me off the meds if it makes the dentist feel better but the meds will still be in my system. They linger for a few months.

I’m sure I’m not alone as one who obsesses about having stage 4 cancer. The kind that can’t be cured. The kind that will eventually kill me. It’s on my mind constantly. Now what’s peeking through and adding to the stress is what will my next line of treatment look like when the Ibrance/Letrozole combo doesn’t work anymore?

I read so many stories of women on their 5th, 6th, 7th, line of treatment, how they’re so sick from the chemo or the injections, the fatigue keeps them in bed more than not, the pain pills they need to take, the nausea, headaches, bone pain, bone fractures, muscle spasms, drains in lungs, radiation on the brain, but they fight for one more line. Maybe this one will be the cure. I don’t think I’ve got that in me.

Chemo was hell and I just can’t see the point in doing it again when it makes you sick. Being sick from it to stay alive a little longer when that little longer is spent being sick doesn’t make sense to me. Radiation was ok except for the burns and the fatigue and the daily 45 minute drives one way for a 15 minute appointment. But radiation to the brain? I dunno…

I’m doing just fine where I am in my treatment right now, stable and all. I fight the little devil on my shoulder reminding me about next lines of treatment because I just don’t want to go there yet.

I’ve been out every day this week. Twice to work to visit, one of those was for a retirement. I like visiting. Some days I really miss it, although I do feel healthier not being there. Being able to nap when I need to and not having to rely on the recesses of my brain for customer/team questions/answers has helped a lot. Sometimes my brain just doesn’t want to work properly and I have a hard time finding words.

Been to the dentist. Right now we’re waiting to see what and if my insurance will cover. My dentist is going for a partial denture, keeping my eye teeth so the denture has something to hang on to. I’m for that. He’ll send me to an oral surgeon because of the cancer and the drugs I’m on. That’s ok too. Being knocked out to pull teeth wouldn’t bother me a bit.

on a side note: I find I’m becoming more and more of a fraidy-cat. Seems as if everything is causing me anxiety. Take today, we are having a wind storm and it was rocking my car. So I started getting anxious. Will a tree fall on me? Will a branch break my windshield? I am going home for the holidays tomorrow and it better not be windy or I won’t be able to get on the ferry. Seems like this kind of stuff is happening more and more. I want to turn into a recluse and never leave my apartment but to add to the anxiety, at some point in the spring I’m going to have to move.

I’m not usually one to feel sorry for myself, there’s always someone out there who’s in a worse place than me.  I just put one foot in front of the other and keep going.  Eventually, I get back on track.   But lately I tell ya, I’m just done with thinking like that.  It isn’t working anymore.  All the little things that go wrong and all the big things that go wrong are seriously out-weighing the good.

The saying “without bad luck, I’d have no luck at all” does seem to apply to my life..  And it keeps piling up.  To add to the pile, I won’t have a disability payment until the 2nd week  of January, transferring from short term to long term. That’s 5 weeks.. My family is helping me financially and I don’t know what I’d do without them but it just sucks.

More for the pile:  I’ve always had bad teeth but in the past few months they’ve gotten worse.  One of my front lower teeth is loose and the gums have receded so far down it’s scary.  I’m going to have to get them pulled and get dentures. And there’s the fear factor to add to the pile.  Low white blood cells from the drugs they are giving me could be a problem.  I have a dentist appointment next week to try and figure out what to do.  I hate going to the dentist.  And I hate needles.  Hopefully, I’ll make it through the holidays with the teeth I have because everyone will be off on vacation before I can get anything done.

Can’t I just deal with the cancer?  Does all this other stuff have to keep piling on me?  Crying doesn’t usually help much but these last few days I’m having a hard time not.  I seriously am just so done.  And yes, I feel sorry for myself. 

My insurance has approved my long term disability and I’ve been approved for CPP Disability as well.   What a chore to get the CPP-D paperwork in.

I got the package from my insurance to apply for the CPP-D in October along with a letter giving me about 2 weeks(or risk losing my disability) to get it filled in and back to my insurance. Thing is, I only check my mail once a week because who snail mails anymore besides the advertising flyers? and had been waiting for the package from them for over a month and never got it, then had the issues with my car and a mini vacation home and forgot about it I ended up with about 4 days to get it done and back to them so I was in a panic.  I did call them about that and they said it wouldn’t be a problem. There was pages and pages to fill out and truthfully, the instructions they give aren’t very helpful.  As it was, I sent the wrong ones to my insurance and to CPP.  I sent the right ones after a couple of phone calls.

I got another call from CPP this week saying they didn’t get some of them.  I filled them out AGAIN(19 pages) and took them to the local office today to have them send it to Victoria.  The local office tells me there’s a package for “terminal” disability that is about half as long that I could have filled out.  Really??

I got another call from CPP today saying they got the package but it’s missing the Dr’s section.  I was told by my insurance that I didn’t need to get that part filled.  Apparently my insurance is wrong. She says it isn’t the first time she’s heard this.  No matter, because the lady at CPP “gets it” she’s going to approve me anyway.  Chances are, the Dr’s section has never been filled out-I didn’t take it to him-so it won’t show up on their desk and stop the process of me getting CPP.

Stress IS a factor on my pain level.  My hip hurts today and I feel like crap.  Having to explain over and over again what’s going on with me is also stressful.  Most people don’t know what “metastatic” means so when I tell them it’s terminal their whole demeanor changes toward me.  That’s what I don’t want happening.

November of last year I had a bone scan and knew, because I saw the scan as it was happening, that the cancer was back and had spread.  I wasn’t officially told until the end of November.  If I go by statistics, I’m 1 year (from diagnosis) of the median survival of 2 to 3 years.  Only about 22% make it to 5 years.  The average time that the Ibrance and Letrozole combination will work is 22-24 months and I’m half way through that.  Personally I’d much rather be “average” than an “underachiever”.  If I make it longer I won’t be disappointed!  It all still seems so surreal.

This past year has sucked.  I’m emotionally drained.  On top of having MBC I made the very difficult choice to go on disability, Among other things, I’ve had major car issues.  Twice.  Financial issues up the wazoo, and I have to find a new place to live in (hopefully) the next few months before they tear my current building down to make room for new apartments. For the first time in my life I wish I wasn’t single.  It would be nice to have someone else worry about all the crap so I could just worry about the cancer.
I found out that treatment options for me are really difficult and would require too much road time if I move back home to be with my family so I will stay here for now.

People often tell me that I’m handling this so well!  My only comeback is that I wasn’t given a choice.  Don’t get me wrong, I have really bad days where I can’t control the panic attacks and am totally freaked out about this thing growing in me and when will it take over my body?  When will it affect my brain?  Will my bones break?… among other thoughts, but I’m still functioning on my own so far.

Next month is Christmas and I’ve never been a big fan of it but I will “suck it up buttercup” and damn well enjoy it because I don’t know how long I will be here and it’s important to my family.