Back to Reality

I have been delinquent, again, about posting.

It is now Friday.  Radiation finished last Thursday and it was uneventful.  It was a little sad to say good bye to my techs but at the same time I hope I don't have to visit them again for a very long time!

Last Friday I had a bone scan.  Oh goodie, time for a little scanxiety.
Gotta love cancer, it really has it's own language.  I have an MO and an RO and a BS but I was not allowed to have a PS.  I've gone through chemopause and grown Taxol fuzz and now it is scanxiety.

To help settle my nerves, on Saturday morning bright and early I hopped a plane to Toronto to meet my baby nephew.  And what a cutie he is! I think that I will have to fit in regular visits to watch him as he grows up.  Afterall, I have to help ensure he does not end up a Leafs fan.

I also made it to a Blue Jays game.......yes, I admit I am a fan, and I got sucked in by all the hype that finally a good team was being fielded again.  Not quite true, but they did beat the Yankees the day I was at the park.

I really wish I had remembered to bring my camera, my phone camera is getting worse by the day.  Ah well, you get the general idea.
Unfortunately we didn't get to catch a foul ball.

In all my visit to Toronto was a wonderful escape from reality and it was a little difficult getting back on the plane to return to my real life.

I have never had any real side effects from the radiation.  I got a few tiny blisters but they are in areas numb from surgery so I don't even notice them.  My skin was pink but it is starting to turn to a tan now.  There is a risk that as the skin changes the area will get itchy but I have not noticed anything so far.  Basically radiation has been a walk in the park.
It was a little mentally tiring at times as I had to be at the cancer agency every day and I always had to plan around my appointments but it was only 16 days.  Not something to actually complain about.

Scanxiety will rear its ugly head again next week.  I have a CT scan on Tuesday and I will get the results on Wednesday.  Fingers crossed the Herceptin and Tamoxifen are doing their things and everything will continue to be negative.

And I have reached out to my long term disability case manager to get the return to work process started.  I am still aiming for the beginning of June.  If that happens it will be so much easier to pretend that my life has returned to normal with just the every 3 week visits to the cancer agency for my Herceptin infusions and occasional check ins with my oncologist.

And lastly, Saturday Ian and I celebrate our wedding anniversary.  And as I can never say often enough, I don't know how I would be getting through this adventure if Ian wasn't helping me every step of the way.

I Almost Lost My Arm Today

I have been a delinquent blogger yet again.  I have been busy going to radiation and walking around the seawall.  There really has not been much to report.

Radiation is Monday to Friday except holidays so there was a nice 4 day break at Easter since Easter Monday is a stat holiday in BC.  I am now at the three quarter mark and so far it has been very uneventful. Until today.  Today one of my radiation techs tried to cut off my arm.  She was horrified, I was glad it happened to me and not to some little old lady or another patient that is stressed out and not coping well.

I have discovered during my radiation treatments that I have been receiving a very customized program.  This for a few reasons:
1. I was born with this weird thing called pectus excavatum.  Basically this means that I had an indentation in my chest due to an abnormality in the growth of my sternum and some ribs.  I had a surgical repair done as a kid but I still ended up with a "funny shaped chest wall".  Yes, that is the exact medical description I was given recently. :P
2. I had a small piece of skin at my sternum that had cancer.
3. There were also metastases in my sternum so part of the goal of radiation was to hit those areas.

Normally radiation for breast cancer patients may only slightly touch on the sternum whereas my radiation oncologist wanted to blast away at my whole sternum.

My radiation involves both photon and electron treatment.  I believe that many patients do not receive the electron treatment.  It is the electron portion that includes a large adaptor that could cut off my arm and it was the cause of the radiation tech freak out today.

The part of the radiation machine that actually emits the radiation is pretty neat.  There is a glass plate that is about 1 foot square through which the radiation passes (in the picture the glass plate is not shown).  On the inside of the glass there are about 40 narrow metal fingers that stick out from either side.  The metal fingers, probably made of lead, since they block radiation, are lined up in a specific pattern so that radiation can only come through the glass in the desired way.
Here's a picture of the fingers before set up:

The machine is set up so that the fingers are in my required pattern and then a light is turned on and lights up on my skin exactly where the radiation will hit.  It is the upper portion on the treatment area that is traced out in ink and becomes my radiation artwork.  This artwork is used to help line up the electron adaptor to the treatment area.

During the set up there is also a ruler that is displayed with light on my skin.  The ruler measures my distance from the radiation source.
I also have 3 radiation tattoos.  Two tattoos are used in the very initial set up, I think to ensure that I am in exactly the same position I had been in during my initial CT plan development scan.  There are red lights emitted from the ceiling, one that crosses me vertically and the other crosses me horizontally, and they must hit the tattoos.  The tattoos are just single needle point pricks so not too big and noticeable.
The third tattoo is used in the electron set up, probably in a similar fashion.

The whole treatment takes about 10 minutes.

Today's little arm cutting off incident occurred after my treatment was complete.  The radiation machine looks sort of like this:

only it is an older version and is blue instead of white.
The electron adaptor attaches to the curved metal piece that is sticking out from the radiation emittor.  In the first picture showing the metal fingers the holder for attaching the electron adaptor is not attached.  The electron adaptor sticks out about a foot from the radiation source and sits very close to my chest and will sometimes actually touch my left arm close to my armpit.  Lucky for me I don't feel it as that area is still numb from surgery.
Anyway, while the electron treatment is happening I am essentially sandwiched between the adaptor and the bed so when treatment is complete I can't move until a tech comes in and lowers the bed enough that I can move my arm out from under the adaptor.

Today, the tech raised the bed instead.  Oops.  And then just to make sure she really freaked herself out she raised the bed a little bit more.  In all she probably only raised the bed about half an inch but she was totally horrified.
I understand that.  You really never intend to skewer a patient.
I, of course, thought it was hilarious and could not stop laughing.  It just felt like the perfect end to a pretty yucky, rainy Friday.

It is just one of those things that happen.  No big deal, I wasn't hurt, no bruising or anything.  I think it just a part of healthcare, everyone does the best job they can but everyone is still human and occasionally the wrong button gets pushed.
That is why for the really vital stuff there are always several different checks to minimize the human impact on the treatment and prevent errors.

Oh, and as for radiation side effects.  So far they have been minimal.  My skin is a little red and I may be slightly more fatigued, but I am currently walking about 50 K a week not including trips to the cancer agency or grocery store so probably not.  Apparently the fatigue is often partly due to dehydration caused by the radiation so I am trying to stay well hydrated.

So that is pretty much radiation in a nutshell.  Have an awesome weekend everyone!

Does Sitting in the Sun Count Towards Radiation?

I sure wish it did!  It has been so sunny in Vancouver and I have spent lots of time enjoying it.  Especially since radiation was delayed.
I was scheduled to start radiation Friday afternoon.  At 0830 I got a call saying radiation had to be delayed until Tuesday because there was a problem with my plan so my radiation oncologist did not sign it off and changes were required.

Friday afternoon while sitting out in the sun after my Herceptin treatment I received another call from the radiation department.  Would it be possible for me to come in Monday morning for a clearance check?  They didn't want to cut my arm off.
Hmmmm, I didn't think I had signed up for losing my arm during treatment so Monday morning I trundled off to the radiation department for my clearance check.

Everyone was ecstatic............5 mm of clearance.

As long as I don't gain any weight I get to keep my arm.

And I gained some interesting body art on the radiation area to help with future setting up of the machine.

To interrupt all of this radiation fun.  My darling dog was sick, again.  It has been off and on for the last 2 - 3 weeks.  We finally decided it was time to take him to the vet and find out what was going on.  I went out for a walk while Ian took Jasper to the vet.  this is what I found when I got home:

Ah, yes.  The Cone of Shame.  Gotta love it.

Turns out my darling dog managed to pick up Giardia.  Probably from eating one of his favourite seawall snacks, goose poo or mussel shells.  Yippee.
The cone is required so that he does reinfect himself by licking his butt before his treatment is done.  Truly, a Cone of Shame.

So, once that  excitement was done it was over it was back to dealing with radiation.

Tuesday afternoon I met the same radiation techs I had the day before so we all sort of knew what was going on.  I got some more body art in green this time instead of black.  The whole process took about half an hour.
And for part of the treatment I have this jelly like sheet stuck to me.  The jelly is supposed to replicate skin so that the radiation is brought closer to the actual surface of my skin.

The radiation machine itself kind of reminds me of the bone scan machine.  There is a machine with a bed sticking out from it.  And there are these plate like things that also stick out and can rotate around the bed.
When the radiation happens I can hear a buzzing sound but I don't feel anything.

Afterwards the area felt a little warm, and by the end of the day I felt like I had spent the day in the sun.  I did go out for a walk, visit Costco, and do some grocery shopping so I did spend part of the day in  the sun but I felt a little more tired than that.

To protect my skin I am supposed to put on a water based lotion twice a day.  I picked up one of the recommended brands on my way home and slathered it on.  When I went to bed most of my body art had disappeared.  Oops.  I don't think my techs are going to be very happy with me today.
Actually, I'm not really happy with me either.  During radiation I have to lie without moving with my hands holding a couple of handles behind my head.  By the end of the day yesterday my left arm was totally numb.  With no body art, today will take at least as long as yesterday if not longer.

Oh well, I'm a radiation newbie.  Now I know to be more careful.  And maybe I should have read the information sheet more closely that said to be careful of the art work.  But I did test the lotion on the ink and it seemed to be okay.  But, I guess not.
Maybe that means I shouldn't follow the directions.  It is so confusing.

At least radiation has begun.  My completion day is April 18th and I can't wait.

Path Report

Now that chemo brain is gone it has been really difficult to stay inside and do nothing so I have been out and about lots and totally avoiding my computer.  As a result I am totally behind in the adventures in cancerland.

I did have a fun day in Whistler

And an uneventful trip up and down the Sea to Sky

(Wow, I really need to clean my phone camera lens.)

I saw my surgeon.........I think, a week ago?  Maybe longer.  No, it must have been a week, last Thursday the 8th.  How ever long ago that was.  What day is today?   Wednesday? No, Thursday, the Canuckleheads play today.  Thank goodness they finally won last game, I thought the band wagon was going to crash.

Anyway, I saw my surgeon last week, the 8th.  Great.  Now I'm getting so loopy I'm repeating myself, I really need to go back to work.  All of the pathology is back.  I have cancer.

Oh wait, we already knew that.

There were 23 lymph nodes removed (no wonder my armpit feels so funny!!!) and one node had isolated tumour cells.  That is as close to being negative for cancer cells as you can get without actually being negative.  My radiation oncologist classifies it as negative.  That is fine with me.

The most important thing regarding the tumour - all margins clear.  Yay!!
The only downside is that there was only a 1 mm margin at the chest wall and 2mm is preferred, but radiation will cover that.
All in all, my surgeon did an excellent job of hacking the cancer out of me.

With the pathology report now available, the next step was the radiation planning session.  That started with a meeting with a radiation resident who asked me if I knew the results of my pathology report and understood what it had said.  Then we covered the basics around what happens during the planning session and then he answered my questions.
My most important question was whether a person can have radiation multiple times at the same site.  This is a potential issue for metastatic cancer patients as radiation is used to control pain of bone metastases.
It turns out that one area can be irradiated more than once but it depends on how much radiation that area has already received and when it was done.  If a lot of radiation was given to a spot, a repeat could not be done within a year or two.  If, however, that spot needed to be done 5 years later, that would probably be okay.

So, now that you have all this new radiation knowledge plus the path results, I tell you that I will be getting 16 treatments, which is a pretty standard course of treatment, instead of the originally planned 10 treatments.  Can anyone guess what that means, remember at the same time about those other keys phrases, "due to my age" and "how well the tumour responded to treatment"?
Pretty much that means we are back to the "we're gonna try and cure you even though we can't really cure you" method of thinking.  The original plan of 10 treatments was apparently decided based on the thought that in the not to distant future the tumour would be involved in my chest wall and then I would have to be hammered with radiation to get it under control.  Now the path report combined with my PET scan makes me a perfect candidate for radiation and they are going to treat me like a plain old breast cancer patient with cure in mind rather than the metastatic patient I really am.
I think that falls in the good news category.

The remainder of the planning session involved getting a CT scan done, once breathing normally and once holding my breath.  I hold my breath for one scan so that my lungs are full of air (obviously) which causes my heart to be pushed down and thus further from the radiation.  Not all patients actually have to hold their breath during the radiation treatments but sometimes it is necessary to protect the heart. Fortunately each radiation zap would be for 30 seconds or less so the chances of me passing out are relatively slim.

My radiation oncologist reviews that scans and decides exactly how the radiation machine has to be angled to hit all of the required area with hitting things like my heart.  Once that plan is made I will get a call from the Cancer Agency telling me when radiation starts.
I hope that call comes soon.  I really want to get  on with the rest of my life.

The Cancer Alphabet

The things I do to entertain myself.

Here it is, The Cancer Alphabet!

A is for Adriamycin.            The red chemo drug.  It causes nausea and hair loss.

B is for Bone Scan.              I haven't been squished by a faulty Siemens sensor yet! This scan is used
                                             to monitor the status of bone metastases.

C is for Ciprofloxacin.         The first antibiotic I have ever been prescribed.  Figures I needed it for a
                                             chemo induced fever.

D is for Dexamethasone.      Yay. A steroid.  Used as a part of the anti-nausea regimen but still
                                              annoying. Causes Insomnia and ridiculous carbohydrate cravings.

E is for Emend.                     Oh anti-nauseant drug........you are my hero.

F is for Family and Friends.  Bet you thought I was going to say Fluevog:-)  This road has been so
                                              much easier to travel with all the support of my Family and Friends!

G is for Gemzar.                   A chemotherapy drug for down the road.  I hope it's a very long road, my
                                              hair is finally growing in.

H is for Herceptin.                May you work for a really long time.

H is for Healthcare.              Our healthcare system is pretty amazing.  It really makes this experience
                                             less stressful when I don't have to deal with an insurance company or
                                             worry about co-pays and deductibles.  It is stressful enough just hearing
                                             about my American friends.

H is for Home Care.            Thank you for not making me change my own bandages.  Yuck.

H is a very popular letter.  All 3 were so important that I couldn't pick just 1.

I is for Ian.                           You are my rock.

J is for John.                        Fluevog of course.  Did you really think I would not mention shoes?

K is for Kleenex.                 Especially the ones with lotion.

L is for Lymphedema.         Really hope I don't get it.

M is for Mastectomy.          It actually was easier to handle than chemo.

N is for Nose hairs.             For such a small body part who knew they were so important!

O is for Optimism.              Not really any point of getting out of bed every day if you don't have
                                            optimism, and a little bit of hope......H is already kinda a full though.

P is for Pancakes.                Yum!

Q is for Quinoa.                   I just threw that in to make me sound healthy.  I really couldn't think up  
                                             anything good for Q.

R is for Rum.                       Needed for mojitos.  I wish it was summer.  Then my mint would be
                                            growing and I could make one.  I could have also selected radiation, but
                                            right now I'd rather have a mojito.

S is for Sebastian.                Hi little nephew, I can't wait to meet you!

T is for TDM-1.                  Newly approved by the FDA.  Also works against the Her-2 gene.
                                            Another down the road drug.  Will also probably cause hair loss:-(

U is for Umbrella.                I definitely need one today.  We are having a pineapple express only it is  
                                             coming from Japan instead of Hawaii........I guess that makes it a sushi
                                             express.

V is for Vinorelbine.           Also known as Navelbine but that wouldn't be helpful for my alphabet.
                                            This is yet another chemo drug.

W is for Walking.               Thank goodness my feet have recovered.  Walking is the only real exercise
                                            I can do these days other than shoulder stretches.  And the shoulder
                                            stretches are getting boring!

X is for Xoleda.                  Here we go again, another future chemo drug.  On the upside it doesn't
                                            always cause hair loss AND it comes in pill form.

Y is for Yoga.                     I am thinking of taking this up once I can move my are more.  It should be
                                            fun, the breathing techniques are practically the opposite of Pilates.  That
                                            should help keep me on my toes.

Z is for Zoladex.                  A drug to prevent estrogen production.  But the real highlight is the 15
                                            gauge needle used to inject the time release pellet under the skin.

My Pill Bottle Pyramid

Recovery is getting more boring.  I can't walk Jasper, I can't lift anything over 10 pounds........actually I can't really lift anything since it feels like I will rip myself open, I can't do yoga or pilates, so instead I built a pyramid:

How exciting.

The pyramid includes everything I took to make it through chemo.  I am missing a few things.  The Emend card at the back was only for one round of chemo.  I had 4 sets of those cards but I threw the others out, I had not thought of taking this picture for posterity when I first started chemo.

I have one unused prescription for a wig.  I have another unfilled prescription for a pain killer but that was for surgery not chemo so I am not including that.

Yea, so, I am kinda bored.  And I have been discharged by my home care nurse so I don't even have her visits to look forward to.  Oh well, at least not seeing her means I am healing nicely.

If you need some entertainment here is a YouTube link (thanks Grace!) http://www.youtube.com/watch?v=iJ4T9CQA0UM

I see my oncologist in another week.  And my surgeon.  By then someone should have some pathology reports for me.  I am waiting to hear how many lymph nodes still had tumour cells.  I am hoping for zero.

And at some point I have to see my radiation oncologist to get everything sorted to begin radiation.  Likely that won't be for a couple more weeks.  I have more healing to do first.

And now, the rain has stopped so I shall go do one of the fews things I can do, walk.

Have a lovely Monday;-)

Recovery is Getting Bor-ring

Thank you to everyone who has gone for a walk or coffee with me during the past week!
Without you I think I would be ripping out what little hair that I have while attempting to not go bonkers while recovering.

I still have the annoying drain so all the exercise I can do is neck stretches and walking.  I know, up until now all I could do was walk so really there should be no problem, but I am SO ready to start expanding my exercise program.
It is possible that in 5 more weeks I can back to Pilates and soon after that I can start going to the gym. And then I will  feel as though I can finally start gearing myself up to get back to work.  It is about time!!!

My hair continues to grow......I might even have to break down and use shampoo for the first time since  July some time in the next few weeks.  That would be so exciting.

Right, the whole recovering from surgery thing.  I stopped taking the Tylenol a couple of days ago.  I woke up one night and realized I had forgotten to take my last dose so instead of getting up and taking it I just stopped taking it.  That seemed a lot easier.
And I still have the stupid drain.  I might get it taken out today.  Otherwise it will definitely go either Saturday or Sunday.  Yay!  Then I won't live in constant fear that I will snag it on something and rip it out.  Ugh.  What a nasty thought.

The flexibility of my arm doesn't seem too bad at this point.  Any limitations in my movement are driven more by the drain than anything else.

Ok, all the above stuff was written at 1 in the morning while I could sleep because of the drain. I am happy to report that the drain came out this morning!!!
It feels like a 50 pound weight has been lifted off my chest. I have to spend the weekend acting like I still have the drain so I don't go overboard and cause any damage but on Monday I can start doing real stretches.

Have a lovely weekend:-)