Monday was a bad day...

..so of course I vlogged it for you!

You can see it here if you can't play this.

The weekend had been a bit busier than normal (have to celebrate ANZAC Day!), but I really don't know what happened to make me feel so badly. Other than the chemo of course...

So now you know that I'm not rocking this whole chemo thing as much as I was hoping. But honestly, if I only have a day like that every 6 weeks or so, I'll cope. So many other people have so many worse symptoms.

And I still have my hair.

For now.

But a funny link is OK too. Right?

Hugs
Megan

I just don'e even know what to say....

But first off, you know the drill. Ignore my unexplained absence and forgive me.
Probably the best way to deal with my inconsistency is to know that I am apt to fall into times of 'funkness' and I just withdraw.(Not to be confused with Funky Town - coolest place of the 80's!)  If I can't make you laugh, I don't want to be 'seen'!

Come on - you know you want to go too!

Now onto the serious side of Fred. And the reason for the title. We went to see the Dr (radiation oncologist) on Wednesday. I had the first of the follow up MRIs last week and we went to get the good news that the radiation worked and Fred was dead - NOT.

For a meeting with not a whole lot of information, and a LOT of me huffing (you might not have noticed that that minor tremble Wednesday lunch time was caused by my extreme vent of desperate frustration ).

The scan showed nothing. Well - really that nothing has changed. I was kinda expecting that. There's still too much pain and lack of motion for it to have been totally gone. But our hope was high for some good news.

That's what it felt like!!!!

There was talk of needing to wait until a year to see any real results. WHAT? You don't have to try hard to imagine how I dealt with that, do you? More huffing and a bit of eye rolling may have happened at this point.

We chatted a bit about whether any drug therapy would help (not yet - maybe after 3 or 5 years. MmmmHmmm - happiness ensued here too!)

We did some clarification on the scans though  - there is no distinction between live and dead Fred. So just because it is the same size doesn't necessarily mean that he hasn't died. Hey - we are clinging to anything right now peeps.

Words were also spoken of just having Fred stable as being a good outcome. Really? I think not.

Then - our world was shaken...

..a bit like this.

We made a joke about just lopping off the leg and getting a 'fake' one. Amputation jokes are always appropriate with your Doc, no?

The answer apparently is no.

No to the joke being funny.

No to it being appropriate.

And NO to it being possible.

All of this time we had really been thinking that if everything goes pear shaped, the worse that will happen is a prosthetic.

Umm - no. The amputation that Fred would require would take so much of my leg - well, all of it really, that there would not be anything left to place a prosthetic to.

So, needless to say that my mind has been in a whirl since then. As attached as I am to my leg, I had come to terms with the thought of a prosthetic. Not really something we were looking forward to, but as worst case scenario, a livable option.

So to say that there just isn't enough chocolate in the world to help me through this is not an exaggeration!

My thoughts are all over the place. I can't get a handle on what all of this means. Does it mean that how I am now is as good as it gets?

Many conflicting and confusing feels right now. I'll let you know when I get some sort of clarity, deal?

Like. Just like!

Until the next time I reappear,

Hugs

Megan

Yep - still breathing!

I know, I know - I've been a very bad blogger and you are all witness to my momentous fail at posting every day this month. But I trust that after reading my sad, sorry tale of woe, there will be forgiveness!
Nah - it's not that bad, but it did get a LOT worse. Worse than I ever thought it would.
And what, you ask, was so bad? Well... in a word - ME.
I pushed the boundaries of the recuperation plan, and walked around the block a whopping three times - and it set my healing back about a month, guessing conservatively. Really. To prove it, let's do a little Megan math - this may hurt your brain a bit, but you'll get over it!

and you thought you were bad at maths?

So when I finished my treatments, I felt like I had about 20% of my normal energy level. You couldn't really tell from looking at me, but after a ten minute chat that left me needing a nap, you kinda guessed it.

That first week after treatment, when we began my recuperation plan, I felt like I had about 30% of my energy. Now that's a 50% improvement - right? I felt like I had so much energy then, that I did a typically stupid Megan thing and overdid it! That night after my little blockies, it was as if all energy had left me. I think I was snoozing by 7! The next day I felt like I had about 7% energy. That's low friends, really low. That's 'I can barely make it to the loo by myself' low.

I didn't leave the house until that Sunday for church and by then I was back up to about 15%. Simple things are exhausting.

Then, I got a cold. Just a simple little snotty nose, bit of a cough cold. You know - the sort that you can just 'soldier on with Codral' cold.(singing it now, aren't you?!)  No big deal. Except that it put me in bed for seven days. Yes, you read that right. In. Bed. For. Seven. Days. Miserable - energy back down to about 7%. Monday was the first day that I got back up, and had some coffee with friends, but that wiped me out. 

Today I feel that I may have about 17% - not even back up to what I was when I finished treatment, and that's been 3 weeks now. I know - that just flew by.

So that catches you up with me, and my brilliant maths skills. Tomorrow I'll catch you up with side-effect news and I'll try not to be such a fail at posting.

But I knew after you read through all of that you would forgive me - you do, dontcha?!

please???

Till tomorrow loves,

Hugs

Megan

Just 6 more to go!

This is one of those times where time is being a little unpredictable. Some times it feels like this radiation thing has taken forever - and other times it feels like it has flown. Now of course, that may depend on how I am feeling. I have noticed that when I am in a lot of pain, time seems to slow down. Funny that!

or in pain....

So what's been going on? Nothing but radiation people, nothing but radiation! I think that I may have 'peaked' with the fatigue. At least I am hoping that I have! I am always totally exhausted, but am finding it really hard to sleep. Go figure!

Some days I can muster up enough energy to get me through a little excursion with one of the beautiful babes who drive me - yesterday it was a field trip to Trader Joe's . Yes. I'm living the life here, living the life! (TJ's is a supermarket - apparently popular in other areas of the US and has just opened their first three stores in Denver. Yes - it IS very exciting! So I need to remind you that Denver is still a little "wild-west"ish???!!!)

it's such a hard life!

My leg is just now starting to turn pink and getting a bit sensitive. That's making it quite uncomfortable to sit! Hopefully it doesn't get too bad - I'm not sure what we'll have to do then - I may become bed-ridden!Other parts are also getting more pink, if you get my drift! Not fun girls, not fun. (Not sure boys can understand the pain involved here - but use your imagination if you're game!!!)

This is what keeps me smiling ....

... my mantel of love! (Those are the roses from V-day from my man.) It's all the cards that I've received, and you can't see it, but there is a vase that now holds all of the little notes that you've sent me. (What? You haven't sent me anything? Hmmmm - I wasn't going to say anything, but..........!!!!) Whenever I start to get a bit sad, I just take a look and remember that I am loved - makes it easier.

So it looks like by next Wednesday I will be done with radiation. Done, I say. Done. DONE! DONE! Yep - pretty much counting down the minutes right now - I cannot wait for this to be all over.

Oh - and a lot of you are asking how we know Fred is shrinking, or how much he has shrunk, or if he is dead yet. The sad news is that we don't know. I'll have another MRI once I've finished treatment and that will give us a little bit of an idea. But the radiation can continue to work for another 2 years!!!!!!!! The story seems to be that since Fred is so slow growing, he is also slow dying. (I, myself, think that a bullet should have worked fine!!!!)

Ha!!!!!!!!

So there you have a quick little update - until next time loves,
Hugs
Megan

The post with way Too Much Information

We're talking side-effects today people, and this is you warning! If you are male and don't like talking about girlie things (no pillow fights here boys!!), are a little "sensitive" (I'm not censoring this) or just don't care to know this stuff - now's the time to tune out!

**** Just a little bit about why this post: I couldn't find this information after all of my very careful searching on the blogissphere, and I wanted to know. Doctors are notoriously understated about this stuff - perhaps they are scared we'll run away screaming? Anyway - I thought this might be helpful for any of you that may unfortunately need some of this type of information. I would have preferred to have been prepared more than I was! **** (Sincerity rant ended!!)

OK - onto the nitty gritty (still time to run - I won't be offended!)

First off is the nausea. Ugh - some peeps had mentioned it, and apparently I have been hit with a pretty decent dose. The story from the Doc is that because I am being treated in a large area, my side effects are pretty large too. (There's a joke in there somewhere, I just know it. I'll get back to you if I can think of it!) The anti-nausea medicine is doing a fairly good job, but it just won't get me through the whole night. It's kinda like being pregnant again - except without the stretch-marks, 'glow' or hope of a bouncing baby at the end of the time!

OK - so for the sake of being downright truthful here, this has been the suckiest thing so far. Really. I cannot exaggerate this enough - I feel pukey most every moment of every day. And we are only one third of the way through. I have no idea how people do this and still manage to keep working - or just doing everyday things. It's gross and it's sucking my funness. Thank goodness I have my sunny disposition to fall back on (that was sarcasm peeps - it's getting hard to laugh this off - so you know it's getting bad!!)

Along with the sickness comes the fatigue. The doc tried to make this sound a little less brutal by calling it 'tiredness' - but this is life-sucking, "can't walk up the stairs" fatigue. Think of the last time you had a true, muscle-aching flu. Then multiply it by about 15. That should give you a bit of an idea of how tired I am. I am choosing to believe that's because all of my white blood cell "pac-men" are using all of my energy eating up the dead Fred cells. White blood cells appear to need a never-ending supply of energy. Thus there is none left for me to climb the stairs.

When I started this blog three days ago (remember the above point about fatigue - sometimes it means I start things like a post, and then just need to lie down and rest. Who knew typing could be so exhausting? Where was I? Oh yeah - so three days ago one of my side-effects was bi-polar bowels. Fun, huh? But apparently the Zofran has won the war, and constipation reigns. More fun. Let me tell you - sometimes I am totally overcome by the amount of fun this tumor is creating.

I'm definitely one of the two here....

These are the three big ones. And nobody wants to talk about them (and seriously, do you blame them?) Now come the other ones. There is a lot of bloating and gas (can we have more fun here?) And my personal favourite  - hair loss. Hmmm - this definitely goes in that WTMI [way to much information] category. So to be blunt - this is not the hair from my head peeps, it's what my Mum calls the 'short and curlies'. I personally think this is hysterical - I'm more of a juvenile than you ever imagined! And with that some 'sensitivity' in the "flappage" (this is my big sister's word peeps - urban dictionary. NOT FOR THE SENSITIVE OF YOU OUT THERE - I'M SERIOUS!!!  I dare you to use it in a sentence this week!!!!!!!!!)

I'm also having a lot of trouble sleeping. Bizarre considering how exhausted I feel. And of course there is some pain. Some of it I am attributing to Fred dying, and others are from being on the table like a contortionist for an hour every day. Some of it will also depend on the area that you are being treated, so unfortunately for me that includes my hip and groin area.

Good news though is that I haven't had any of the skin burning that I was expecting. My thigh is hotter than the other one for a few hours after my treatment, but it has usually been back to normal by bed time (at the exceptionally late hour of 9:30!!!!I told you I was tired).

OK - so there you have it. If you got this far, I'm very sorry because it obviously means you need this information. (If it's because you love me - thanks!! I love you too - but I think you may know things about me that you wished you didn't)

Go on - I give you permission

Hugs

Megan

I got my first tattoo(s)

But they were nowhere near what I imagined my first 'ink' would be. (Warning - this is long - so either grab a cup of coffee or just pretend that you read it and skip down to the ecard!!!!!)

Really thought it would be more like this!

Thursday was 'test' day. A second MRI to find out just how large Fred is. Apparently the first one didn't actually reach the top of the tumor.The first one was at a lovely little private centre, this one at Kaiser. The first one was smaller -so my face was out of the actual machine, but this one I was all the way in with my face just a tad off the top of the machine.

The 'little' one - i went in to about mid chest

This gives a good idea of how it feels - although you are up higher to the 'roof'

The first hour - yep, you read right, the first hour - was fine. I just close my eyes and pray, and doze on and off. Then I needed the contrast. Last time I had no problems at all. This time - not so much. I was chatting away with the nurse as she was shooting me up (she'd out me on tap before I went in the tube) and after just a little bit I started to feel very queezy.
"Is this likely to make me feel sick?" - and well, apparently the answer is yes. I still had 3cc's to go and she waited until I thought I was OK and then started to push it through a little slower. But this time the queezy turned vomitous ( a new 'Megan" word!) and I had need of a kidney dish right away.

the vomitous culprit

{"Well - just try not to move your legs while you vomit" - great advice I'll keep till my dying day!!! Mind you - my legs tied down and my feet taped together, so movement was unlikely.

That queezy feeling never really left me for the rest of the day, but I soldiered on over the road to St Joseph's for my CT planning scan. What a trooper - I'm impressed with me too!

The MRI took about 90 minutes, so we were early to the CT - enough time to get a cup of tea and calm down a little. It's really hard to find anyone ho talks about these scans online - trust me, I've scoured blogs!!

This looks pretty much like the room I was in - just beige instead of green

So for the sake of anyone else who might find this information useful (and I pray that you never do) here is my story.

It starts........now! (I love Graham Norton - what a guilty pleasure)

I may or may not need to confess after I've watched this!

My doctor was in the room with the machine - along with two nurses. Great gals - I'm gonna like working with them daily. (On a side note - as we went into the waiting room, a girl was leaving with a certificate. She had just finished her treatment plan and everyone was congratulating her and wishing her well. Cool or what?) I had to leave Piet in the waiting room while I followed one of the nurses to the room.
The doc chatted with me a bit and then explained what they were going to do - namely a practice dry run with the lasers.This is where it got a bit different for me - I have to have my treatments face down.
So while they explained that they were going to be placing some stickers on me as guides, and a few tattoos so that they can 'line me up' with the radiation machine, I had to sign a waiver. They may or may not have told me what I was signing away - but at this point I think Fred is worse than anything else that might happen.
I have to have my treatment with my face down. So I had to take my pants off and get down on the 'table'. There was a foam pillow like on  a massage table for me to place my head on, and for my legs there was a big blue pillow. But my face is just an inch or so from the table - can you say claustrophobia? The table was a covered mattress on a base that wheels in and out of the scanner. But while you have your face down you can't see when they touch you or wheel you or move your legs where they need to be!

kinda like this but nowhere near as comfy

While I was on the table, I could hear the doctor and the nurses talking in the little offside room where they could see the scans. Then someone would come out and move me, or the table, sometimes both. After about 45 minutes of this (remember my face has to be down this whole time - and I have to 'try not to wriggle'!) they had me where they needed to be and one of the nurses came in to 'mark' me. I think that by then I had a fair bit of Sharpie on me, but now it was tie for the tattoos. And really all that was was a large needle with some ink in the hole through the middle of it. So just a jab for each one got the job done. It's just a blue dot - and trying to find them on my legs is like trying to find a needle in a haystack - or rather a blue freckle among millions of brown ones. I hope they glow in the dark!!!

if my skin was not as freckled as it is, this is what they would look like!

After they had stopped bleeding, I got my jeans back on and the nurse gave me my check in card (barcoded) and showed me where I would wait to be called. We watched  a little video and chatted with another nurse about the expected side effects, and then 90 minutes later we were on our merry way.

So there you go - what to expect of your 'test' day getting ready for radiation. Not recommended peeps, not recommended!
I start treatment on the 16th, and the lovely Kelly is organizing  a signup for drivers and feeders. So - if you have been dying to spend some quality time with me, I'd love for you to come and drive me to my appointments! Just let me know and I'll pass on the info to her (my first self confessed groupie)

radiation won't really make you like the Hulk!

Thanks for hanging in there - you deserve a medal!!

Hugs
Megan