Move Over Wheaties

There's a new breakfast of champions......

And this is what a week looks like.......

I started my new treatment, Capecitabine, last Wednesday evening.  It is 7 pills with food morning and evening.  The doses are supposed to be 12 hours apart but that is a little tricky as I am not about to start having breakfast at 7 am.  The current plan is a 3 week cycle, 2 weeks of pills then a week of no pills.
The fun will increase when I add Lapatinib to the regimen.  Five pills either an hour before or an hour after a low-fat meal.  And I'm supposed to take it at the same time every day. Hmmm.
I'm not giving up good breakfasts or good dinners so neither of those meals work.  I guess that means pills with lunch......except I'm too inactive so I don't eat lunch very often.  Lunch of celery here I come.

I have known several people that have been on Capecitabine.  Many have had a lot of trouble with side effects, in particular hand and foot syndrome and mouth sores.  Because of all the potential problems with side effects the plan is to figure out my Capecitabine side effects with this 1st cycle and determine the best dose for me. 
We can do all kinds of dose adjustments as the pills are 2 sizes, 500 mg and 150 mg.  I am currently on 1750 mg per dose.  If necessary that can get dropped to as low as 1000 mg per dose or anywhere in between.  The cycle can also be changed.  I know of people that have done 1 week on, 1 week off.  There is so much more flexibility with pills instead of iv dosing.
With the Capecitabine dose under control the Lapatinib will be added with cycle 2.  The two drugs in combination can create a whole new side effect monster.  Apparently I could get angina or heart failure but I will hope for the best.  There's a rare genetic mutation that makes a person unable to process Capecitabine causing them to almost immediately experience the most extreme versions of all the major possible side effects of the drug yet getting no positive cancer killing effects.  Sounded peachy.  I didn't have that so I'm really hopeful I won't have a massive heart attack or anything when I start the Lapatinib.

I am now one week into my 1st Capecitabine cycle and I haven't experienced any side effects.  I know that side effects can increase as the amount of drug in my system increases but the no side effect thing freaks me out.  Am I just taking a mouthful of placebos twice a day?  I have always felt that having side effects is just a little confirmation that, yes, I am taking the right drug.
If anything this morning I had this vague sensation that the neuropathy in my left hand was slightly better than it has been for a while.  WTH????
The other, more obvious way to tell if I am taking the right drug is that there is improvement in my symptoms.  There might be?  Maybe? IDK.
Well, I guess slightly, perhaps.  I can sleep in bed again.  I don't have to be mostly upright on the couch.  That is good.  And I can even sleep on my side for a little while if I prop up my fat arm a bit.
The bumps seem to be decreasing in some areas but I think they may still be spreading slightly in other areas.  I took some pictures a couple days ago and I will take more in a week and compare them.  That will give a definite answer to how much, if any, change there is.
The pictures made me think of a pale elephant with small pox 😱

So for now, the official report is......on a new treatment.  Still alive.

Come back 2016

I'm sorry, 2016, you weren't so bad.  Can't we just pretend the last 10 days didn't happen and go back a year?  🙈 (This is new in Blogger, they finally have emojis......or maybe it is just that I'm using Windows 10 rather than an ancient Mac.  Apparently this is face with look of triumph 😤.  I always thought it was super angry face.  Hmmmmm.)

Right, back to this whole 💩 2017 thing.......

Last....Wednesday?.....maybe Tuesday, yes, Tuesday, my amazing elephant arm seemed to be a little more swollen than it had been.  It does go up and down a little bit, but it seemed worse then it had been for a few days.
On Wednesday evening I noticed a few bumps on the front of my right shoulder.  Being an optimistic sort I thought that perhaps because the general inflammation in my shoulder and around my collar bone had gone down the bumps had always been there but they had been masked by the inflammation.  But, my arm was definitely more swollen than it had been and was beginning to ache and feel very heavy.  Pretty much how it felt in October when my last treatment failed.
On Thursday to get away from it all I spent a lovely afternoon at the movies with my aunt.  We saw Why Him? starring Bryan Cranston of Breaking Bad.  It turned out to be a Christmas movie which I appreciated as I love the Christmas season and I'm always sad when it ends.  In a way it felt a bit like an updated version of National Lampoon's Christmas Vacation, my all time favourite Christmas movie.  It doesn't contain the cleanest jokes, but I will admit I laughed so hard at one point I snorted.  And if anyone hears of fully automated Japanese toilets let me know. I really want to get me one.

By Saturday the mobility of my right shoulder had decreased dramatically, the bumps on my shoulder had spread, and my arm was the most swollen it has ever been.  At that point I decided to email my oncologist to give her a heads up.  I had an appointment with a sub oncologist Monday morning but I thought my regular onc would want the warning that it looks like I am already dealing with a failed treatment.
It has been very uncomfortable trying to sleep.  I need to keep it supported or my shoulder pulls in the most awkward way.  I had a CT scan yesterday afternoon on my pelvis, abdomen, and neck.  It had been booked for a while....it was supposed to show how wonderful I was doing on the TDM-1 instead I'm pretty sure it will show progression.  Poo......or should I say 💩
Last night I noticed that any pressure of my right arm against my ribs was unpleasant.  This afternoon I found new lump above my ribs.  I have this feeling that I have a sore throat, I really hope I am not getting a cold that could interfere with my treatment, but it is possible the sensation is from the large lymph node I can now feel right above my collar bone.

This is when I feel obligated to quote my first crush, Johnny Castle.  Mmmmmm......well, my first crush after Maverick (I suppose I could have picked Danger Zone but I haven't heard the theme song for ages) , and Craig's grade 5 teacher, Mr. Gilchrist.  Oh and that boy in my grade 2 class at Pebble Hill in Tsawwassen.  I think I might still remember his name but I'm not telling any of you who it was, that would be just a little too mortifying.
And my real first ever crush:

And those uniforms were pretty stellar, too! (For anyone not up on Vancouver Canucks history that is Richard Brodeur, King Richard, the Canucks goalie during the 1982 run for the Cup.)

Ok, now that we have done that little trip down memory lane, back to the point I was making about quoting Johnny Castle 💘  One of the things that MBC patients (or anyone with a terminal disease) have to deal with is how to slot into regular life and make plans like regular people for the future.  Not that we have to slot in anywhere, but as a part of living, and I really like doing that, it is pretty common to make plans for the future.....such as a trip to Australia next January, or a theatre show that won't be in town until fall while dealing with the reality of possibly being dead in 3 months.  I guess no one really knows when they will go, but people with terminal illnesses generally have shorter life spans than people without terminal illnesses.

I am sure there are lots of quotes from lots of other movies I could use to prove this point but since I have been a Dirty Dancing fan for almost 30 years I'm going with this one.......

                                           Last month I'm eating ju ju beans to stay alive. 
                                          This month, women are stuffing diamonds in my
                                          pockets.  I'm balancing on shit and just like that
                                          I can be down there again.

Not a totally relevant quote but it continues the 💩 theme.

Patrick Swayze died of pancreatic cancer in 2009.  While he was on treatment he filmed one season of a tv show called The Beast.  I don't remember much about it other than Ian and I both enjoyed watching it.  If you need something to watch it is worth a look.

Tomorrow morning I have a brain MRI then I have an appointment with my oncologist.  We are both expecting me to move to a new treatment.  It really sucks that I burned through a less toxic treatment in less than 2 months.
The next treatment will probably be Capecitabine, a pill form of chemo.  It is odd to think that for the first time in 4 and a half years I won't be on the chemo ward every 3 weeks.  It does add more flexibility to my life but I will probably miss the place.  There is the possibility that I won't lose my hair but there is a fairly big risk of hand and foot syndrome that can cause neuropathy, redness, and blistering of my hands and feet.  That doesn't sound fun, but it would be better than what I'm currently dealing with my arm.

That is all for now.  I'll be back once I have my life sorted out a bit more.