Living in the "I don't know".

Here's the video about not knowing.

You can go directly to it on YouTube here.

I'm feeling a lot better physically today - but my poor family did get a dose of my 'grumps'!

Hugs
Megan

SURPRISE!!!!

Hiya! Here's an update for you, I did something special for you this time, and made a You Tube video! 

But be warned - it's LONG! 20 minutes LONG. So get a cuppa ready! But you'll get an update from me in a semi personal way, along with all of the ums and ahs, and staring off into the distance. I'm not too sure that I covered all that I wanted to, so maybe another one is needed (with some editing training!)

Sorry that this has taken so very long - but it's a new year and I will try to be better in keeping you in the loop as to what is going on...Let's get together a bit more this year, OK?

If you make it through the video, and you want me to do some more, give it a thumbs up and subscribe and that will let me know that you liked it. Leave me some feedback on any questions you have, or anything really.

If you can't see me below (or if you are on an iPad apparently) you might need to click here.

Happy 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 story so far

In June this year we went on a vacation with my sister and her significant other. While we were enjoying the lovely, humid sights of New Orleans I mentioned that I had this lump on the back of my thigh that was making stretching after running difficult.
Baz made me promise that I would go see my doctor. Actually - he paid me to go see my doctor! Aussies really have trouble understanding the medical system here. Truthfully - after 8 years, we still don't understand the medical system!

So, July 30th was the appointment with my PCP - Dr K. LOVE this guy. I really thought that it was some sort of benign tumor, that I would have surgery to remove it and be laid up recovering for a few months and that would be that.
Hmmm.... You've guessed it by now. Not so easy.
There was a 'normal' x-ray. And then a non-conclusive MRI. A trip to an orthopedic, oncologist specialist surgeon. Then finally a guided biopsy that resulted in a diagnosis.
I have a deep musculoaponeurotic fibromatosis. Or more commonly known as, well - easier to say at least - a Desmoid Tumor.
Not cancer. But not NOT cancer!
So - as far as I understand, it's really a benign cancerous tumor. He will continue to grow, but wont shoot off babies into the rest of my body. He responds similarly to cancer, and so we treat him like cancer.
Today marks the 3 month mark since that visit and a visit to an oncologist to talk about getting rid of this thing.
We have named this 'mass' Fred - get the name of the blog now?

My case has been to the Tumor Board, and my team has decided that radiation is the first course of therapy. That will start on January 16th 2014. Fred is too large to be removed surgically - that would actually be called an amputation! Not really an option if we can help it.
I am to have 33 treatments, Monday through Friday. That's about 6.5 weeks of a daily trip downtown during winter - YAY!
After that will be another MRI to see if ti has effectively killed Fred, and if not then we will look at chemo options.
Flip on over to the main page to keep up to date with how I survive the radiation. 'Cos even that is not straight forward with this tumor called Fred.....

Hugs until next time
Megan.