I have been feeling happy and healthy and content.  Funny how just a lil’ ol’ CT scan can screw that up.  It isn’t just the scan that does it though.  Anything cancer related; scan, appointment, pharmacist all take the hot air out of my balloon, bringing me back down to earth to let me know that I’m not healthy and then staying happy and content is tough.  Takes me a couple of days to get over the anxiety.

Today’s appointment was easy peasy.  I went through the whole song and dance of them not being able to get the catheter in and stuff, to do it on my other arm, lymphedema be damned.  She asked to try and low and behold, she got it in on the first try.

I’ve lost count of how many CT scans I’ve had.  Wonder how many more I will have?

 

Went to a funeral today for a co-worker who was diagnosed 3 years ago with metastatic colon cancer.  She was told to get her affairs in order when she was diagnosed but she refused.  She said she had stuff to do yet and wasn’t ready.  And she did the stuff until she was ready.   Parts of the speeches today were in her words and that made it all the more special.

My nickname for her was “magpie”  because she never let up when she got her mind set on something and continued to natter in your ear until you saw things her way.

I remember calling her and telling her I have MBC and she said that she thought for sure I was going to beat this thing.  She never thought she was brave or courageous, she was just doing what she had to do.  I understand that.

She will be missed.

Had my 2 month follow up today and there’s no change to my tumour marker numbers.  That’s a good thing.  I have to go for another CT scan.  That’s a bad thing.  Looks like I get to go for one every 3 months whether I want to or not.  I’m going to try it in my other arm.  Talked to the doc about lymphedema and he figures I’ll be ok.  Apparently lymphedema isn’t a big issue with needles.  We’ll see.  At least they’ll be able to find a good vein on my left hand.

My next oncology appointment is coming up and as usual, I am getting anxious.  It’s a trigger for me, and why wouldn’t it be?  MBC is on my mind constantly but with the upcoming appointment, the darkness sets it.  Scouring the internet for better statistics than what I already know, looking for that obscure treatment that’s so new it isn’t part of the cancer community’s dialog yet.

I’ve come up with an analogy that’s a little off the wall, but I think it’s relatable in this day and age of crime shows on TV.  They’re my favorites to watch, so anyhow:

When I was first diagnosed with breast cancer, I had a short sentence. Only 8 months of incarceration (surgeries, chemo, radiation, hormone therapy) and rehab (I had a double mastectomy and was put into early menopause) then follow up meetings with my parole officer (oncologist).  For 5 years I followed the rules, took my meds, met with the oncologist and did everything I was supposed to.  I wanted to be free.  Free from the hormone therapy I was on, free from having appointments with my oncologist.  Free from cancer.

Things went bad for me and I was “arrested” again, being diagnosed with Metastatic Breast Cancer in November of 2017.  Because I was a repeat offender, having had breast cancer, the sentence was pretty harsh.  I was given the death penalty.  Now I start my appeals, hoping they will commute my sentence to life, knowing that’s not going to happen.  Chances are I will only have the time it takes for the appeals to fail.  Statistics say the 5 year survival rate is 22%, the median is 3 years on diagnosis of MBC.

Blood work and meetings with my oncologist started out being monthly.  Check ins daily with my medication.  Occasional spot checks with CT scans.  My appeal is in the works.  Meetings and blood work now every 2 months but still daily check ins with my meds and occasional scans.  Bone pain, sleepless nights, night sweats, hot flashes, fatigue, dry skin, slow hair loss are now part of my sentence, my prison, my daily life.  Appeals (treatment for MBC) can take years before there’s a ruling, (the treatment stops working).  Right now I’m still stable, in limbo, waiting.  If this appeal fails, will there be another for me or is this the only one I get?  Will there be another line of treatment for me?

I know this won’t last.  Somewhere down the road the appeals will all fail,  the evil cancer will talk my body into becoming weaker, giving in to it’s deadly grasp, and my once lenient meetings with my parole officer will again increase to monthly, maybe even weekly. I will eventually be sent to death row to await my execution.  No matter how much I toe the line, follow the “rules” it’s going to get me.

Next week I find out if the appeal is still  in process.  For now I try to make the best of it, more visits with family, cherishing my friends.  Being with just me most days, pretending I’m retired and doing what I would do if I was really retired and not living with MBC.  Occasionally planning for my execution.  Telling anyone who asks what it’s like to be me and in my shoes, being open, honest, and not pulling any punches with my answers.  For now I just live.

 

Been a busy month.  I’ve moved.  I’m still unpacking (unpack a box and rest,  unpack a box and rest.  Same process as when I packed but in reverse 🙂 ) but am away from that noisy place I was in with the noisy neighbors and the noisy construction right outside my deck and the run-down building.  It’s quiet and peaceful here.  I’m enjoying it now, but once I am over all the new noises, I’ll be able to sleep better and really enjoy it.  Grady is starting to get used to it too.  He’s picked a favorite spot and is finally eating normally.  Before I moved in here, me and the other tenants were being harrassed.  There’s really no other word for it.  The building is being torn down and being replaced by a new complex-part of it has already been built.  We all knew it would happen this spring/summer.  In November we had a suite inspection and I got a warning for my smoking in my suite even though I’d been told I was grandfathered in.  We got a notice in January with 2 options for moving:
A) move to a different property with a monetary incentive.
B) move to the new building and pay $100 more than what I was currently paying. We were also told we would need to be out by May 31 so demolition could begin.

I think most of us chose B. We had another suite inspection late February and about 10 of us got breach letters. Mine was about my smoking (apparently being told I’m grandfathered in didn’t matter) and for clutter. I had boxes packed to be donated or tossed in the process of downsizing and I told them that. Then we get a 3rd option; move into another property that they own, with a monetary incentive, at my current rent. I jumped on it. I’m not holding my breath waiting for the money.  It’ll be a bonus if I do get it.  I decided I didn’t need the harassment of waiting for the new building. They obviously don’t want us in there.  My guess is the low rent we would be paying.  I’d signed a lease for my new place the day before I got the breach letter. They were returning the 3rd week of March to make sure we’d fixed the breaches and to do a bed bug inspection the day after. One tenant got a breach for having a shoe on his deck, another has small children and wasn’t allowed their toys on the deck. I also found out that at least one tenant is to have their carpets and drapes cleaned. Seriously? They’re tearing the building down! Goodbye stress, hello nice, quiet, new to me apartment!

The last week of March I went home and visited my family. I stayed with my sister for 2 days. They have this cute little room in a building out on it’s own with heat and a bed and I stayed there the first night. So quiet and peaceful over there. The rest of the time I stayed with mom and visited my aunts.
It’s nice to go home for visits. I really do think it will be my dying place when I need that.

Ironically, the elevator wasn’t working in my new place so we couldn’t move me in before I left for my visit.  I was so overwhelmed thinking of having to move….Surprise of all surprises, all my stuff was moved while I was away.  I am so blessed with good friends and an awesome family.

It’s stressful, the days leading up to the visit with my oncologist.  I always wish for good news, and dread bad news.  Although the “hurry up and wait” aspect of this disease is mentally and emotionally as well as physically draining.  Some days I’m not sure if I’m physically tired or mentally tired, or both. My anxiety, which is there every day, just increases before and on oncology days.  I wanna just curl in a ball in the corner for a few days or run away from it all.  But I can’t do that.  Life still circles around me and won’t pause just because I need it to.

According to what they could see on my CT scan, there doesn’t appear to be any changes to my tumours.  That’s a good thing.  My white blood count is still really low and my markers are still in the 60’s so there isn’t really any change there either.  This is all good news.

I asked him if the effects of radiation wear off over time, is that why my shoulder hurts and lately my hip has been sending me big zingers of pain, not to mention waking me up at night a couple of times.  He didn’t know.  Usually an increase in pain indicates tumour growth but because the CT isn’t showing any, it is possible the radiation is wearing off.  On top of that, those areas are compromised already so they could just be feeling the stress of time.  We talked about what to do about it.  He mentioned me being on the bisphosphonates and was surprised when I said I wasn’t taking that.  And apologetic.  For some reason my chart shows I am.  Bottom line is I’m going to have to just deal like I have been and if the pain gets too bad again, well, I’ll deal.  Right now, I’m not taking any painkillers for it, the pain isn’t chronic, just in spurts.  I know he wasn’t happy about me not taking the bisphosphonates but I’m a really good candidate for “jaw rot” and personally, I’d rather have the pain and chances of fractures thrown in then an infection that can’t be healed.

I see him again in 2 months.

I met with an oral surgeon today about having 4 of my teeth extracted to make way for a partial denture.  He won’t do it because I have had a bisphosphonate even though it was over a year ago.  He says it isn’t worth the chance of getting an infection that won’t heal in my jaw.  I call it “jaw rot” because that’s kinda what can happen as a side effect from the bisphosphonate.  If I can find out if the amount I got was minimal then he’d consider it but he says it has a “half life span” of 20 years or something so it’s still in my system. He did give me another option which is to just get a partial around my remaining teeth and when those fall out on their own, to have them put into the partial.  I do prefer this option.  I really wasn’t comfortable with getting more teeth extracted and was leery of the chance of infection.  I’ll talk to my dentist about it tomorrow when I see him.

They took a pan and it appears that I have an impacted wisdom tooth.  Who knew?

Before I had radiation, along with the severe pain in my hip, my foot would tingle, feeling like your hand or arm or foot does when it’s “asleep” and waking up.  Along with the tingles, my foot would swell.  Sometimes so bad it was hard to take my runner off.  It was always just one foot, the one on the same side as the cancer.  It only seemed to happen when I was on it too much, like Monday to Friday at work.  By Sunday night my foot would be back to it’s normal size and the tingles would be gone because I wasn’t using it as much.   Back to tingles and swelling by Monday night.  It was really annoying because I always want to shake it to get the tingles out, especially at night when I was trying to sleep.  The dr and oncologist never said much about it.  My guess is part of my pelvic tumor is pinching a nerve.

After I had radiation the tingles and the swelling stopped along with the hip pain.  I guess it’s pelvis pain and not hip, but I’ve been calling it “hip” for forever.  There was never any guarantee as to how long the radiation would work.  It was for pain management and not for shrinking the tumors.

The  tingles are starting to come back, especially if I’m on my feet too much.  Every time it starts, I’m checking my foot to see if it’s swollen but so far it isn’t.  I’m hoping this isn’t the start of the radiation wearing off.  I’m not ready for it to progress back to the pelvis pain.  I’m not ready for any progression yet.  I’ve gotten used to being in limbo.

…ohhhh the needles!

Went in for my CT scan and warned him-they only had one tech on today, usually they have 2- that I’m a wimp when it comes to needles AND they’re difficult to get in me.  I tell myself every time that I get this done that it’ll all be fine.  Rarely is it fine.

He tried twice to get the catheter in for the contrast dye and it wouldn’t work.  The needle would go in but not the catheter.  He called one of the nurses in from the ER because “they’re really good at the difficult ones”.  She tried it once and no go.  She says I have petite” veins that zigzag.  He says I have thick skin.  “Not lizard skin, just thick” he says, like the needles aren’t sharp enough to go through it. None of this is good when they have to put something in my vein that looks bigger than the vein it’s going into. Them trying to get the catheter in is incredibly painful, wiggling the little tube thingy around in your vein.  Finally he asked the radiologist if we could do the scan without the dye.  Won’t see any cancer in my organs but bone mets will show.  Fine by me.  I can wait to find out if it’s in my organs, I was more concerned with my shoulder anyway.  We did the scan without the dye.  This time.

So far 1 in 5 times has gone like clockwork.  I’m getting to the point where getting a CT scan is starting to cause me higher than normal anxiety.   Hopefully my next scan is at least 3 months away.

I’ve been waiting for approval from my insurance to get a lower partial denture.  My teeth are in rough shape.  One of the front ones has been loose for months.  I finally checked with them because I haven’t heard anything and they’ve approved the procedures but in the meantime, my tooth had gotten worse.

2 nights ago it was really sore, about a 7 out of 10 on my pain scale. Took a painkiller yesterday because I couldn’t stand the pain anymore.  I called the dentist and got in this morning.  Aesthetics be damned, I had it pulled.  I really don’t get out much and should be getting my new teeth in the next couple of months anyhow.  Now I wait to heal and hopefully there won’t be any complications.  Then I can finally eat something that doesn’t have to be cut into bite sized pieces.  I’ll be able to eat a hamburger or a sandwich.  I’ll be able to eat like a big girl.

My anxiety level when I go to the dentist has always been high.  Today it was sky-high and I was visibly shaking.  I get so freaked out from the needles and the pressure they cause when they’re filling or pulling or drilling and did I say the needles?  It seems worse now that I have MBC because I have to tell them and it’s a discussion and they get it.  They just get it which makes me feel really vulnerable and sad.  I get to meet with a specialist and hopefully he’ll put me in the hospital to pull my teeth.  I hate freaking out.