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

I made another YouTube video for you all!

I think it might be laziness - but you all seemed to appreciate 'seeing' me last time, that I decided to do it again!

This one catches you up on last week's visits to the oncologist and surgeon.Not giving anything away here - so you'l have to watch and see what's going on!

If you can't see the video below, give a click here and it will take you straight there!

So thanks for checking in, I'll 'see' you later!

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

FAQs

I know you've got 'em, let me try to answer them! These really are the questions that I get asked the most - but if I haven't answered your particular intrigue, just ask me in the comments below. Promise I'll look - Facebook I'm not as good at getting to, but I'll try, OK?

How are you feeling? Really?
And the real answer is - I feel fine! Boring but true! If it weren't for the extreme fatigue, I would be back to how I was before the treatment. The pain has shifted, but is manageable, and I am frustrated by not being able to do anything, but really I am fine.
Within myself, emotionally, I am also good. I get bored easily, and I am sometimes worried that my brain has suffered somehow from the frying, but that may be from not doing anything. It's all a crazy circle.

Did it hurt (the radiation)?
NO. That's the short answer. The longer one is that the last three treatments hurt a bit when the rays went over where had started to burn. But they don't stay in one place for too long, so it wasn't that bad, although I would not have wanted it to go on any longer!

It's a 1

Do you think it worked?
Hmmmm - now that's a tricky one. Right now if I run my hand over the Fred area, it feels a lot bigger and tighter. The Dr said that I could expect some swelling, so I am sure that is what I am feeling. And of course I cannot feel the whole of the tumour, so it may have shrunk at the ends.
SO no real answer for that right now - but I am relatively optimistic and spend 'nap time' imagining my white blood cells as a pac-man operation eating away dead Fred cells. Fun, huh? Feel free to play along.

When will you know if it worked?
Ahhh - the million dollar question! Again not an easy one to answer though. I'll have an MRI the first week in April which is just a little pre-lim look see. We were told that if it looks good then, then it did a great job. But if it looks bad, then we'll just ignore it. Right.
The explanation for this? That we are expecting to see some swelling and damage from the radiation, so we ignore a 'worse' scan. But if it shows some improvement then it must be a big improvement to get past the fry damage. Make sense? No? It's OK, 'cos I get to have another MRI in July that will be far more reliable (because all of the SE from the radiation will have gone - they better have!!)
However - the radiation doc did suggest that we could see results from the radiation for up to 5 years because of how slow it grows. I think you can guess how well I took to that little piece of news!

So is that it? No more treatment?
That's it for radiation. You get one shot at one spot - so Fred has had all the frying that he's going to get.
The radiation oncologist does not suggest any further treatment. That would be some sort of drug therapy/chemo-ish treatment. I am leaning towards this to be honest, but I am waiting until the July scan before we make that decision. I'm not a patient person, friends, so this is hard for me. I wanted the radiation to just shrivel Fred up to a crisp - but we also know that I have a bit of magical wishing going on in this regard!

is killing Fred considered evil?

I think I'll do a post on patience, or the lack of it, but I am telling you that there is nothing in me that thinks 5 years is an acceptable time to wait. I'm sure you're feeling me, right?

What can I/we do to help?

Awww - thanks! But we are doing fine now. My BSF babes made us meals the whole way through, and after, treatment, and now we are getting through the stash of meals I had frozen before. SO that is taken care of.

Piet is also the world's best housekeeper (save for maybe his Mum!!) and he just does everything around the house. I am NOT ALLOWED to do anything. Truly. Sometimes I can get dinner ready, but that's about it. I'ma actually starting to feel a little bit useless.

I know, I know

When will you be back to full health?

I so wish I knew. The doc suggested about 6 weeks, but I am having a hard time believing that could be possible. I was so optimistic - but it was that magical thinking again. I am trying to be good and sensible (!!!!) with my recovery, but it is so hard.

SO that's it folks. Seriously - if I didn't answer something, just ask me.

And just because I need a laugh...

but I know you know that!

Till tomorrow loves

Hugs,

Megan

Side effects.... and a drive.

I promised you yesterday that I would update you on my side effects (SE), but of course there will be some gruesomeness involved. So for those of you who are a little squeamish, let's do the drive first so you can leave after that.
Aren't you curious? It was the first time I'd been behind the wheel for 9 weeks.
Did I kill someone?
Hit something - or someone?
Have an accident?
Cause an accident?
Take a look see...

so good so far - getting out of the driveway

proof that it wasn't an optical illusion!

The Princess came along with me to make sure I was OK - and she looked petrified! I really am not sure what she was expecting - I can't imagine that she was thinking I was a bad driver. Hmmmm.

So we drove down the road and around the corner all the way to Safeway. Just three blocks. It wasn't painful exactly, but it also wasn't comfortable. We got there and home fine.

I think that the feeling was that I am fine to drive just around here, but anything further really needs to be done by someone else for a while longer.

Consider yourself warned!

Now we move on to the SE. SO consider yourself warned! It won't be too difficult for you - but again, if you are a little sensitive, please spare yourself now!

Firstly - I think I've already mentioned this, but it needs to be remembered, the nausea is gone. Yay! I cannot tell you how amazing those cups of coffee are in the morning!

The fatigue seems to have set in for the long haul ( you can read yesterday's post for a bit more on that). I was being for too optimistic about that leaving soon.

Digestive issues (turn away now - it's not too late!) - still a big problem. Constipation is just no fun at all - and we all know that I think things that aren't fun just shouldn't be allowed! We at first thought that it was because of the meds that I was taking, but I've weaned myself off of the heavy (fun!) pain meds, so that doesn't seem to be it. I think that the radiation got some of my bowel and so now it just doesn't work. I will never, ever again take for granted a daily poo!!!!!!!

I know you're thankful too!!

There is still a lot of skin peelage - hah, I just made up a word. Impressed? Unmentionable places continue to shed skin - layer upon layer. I think Sara Lee may have had radiation!! I also was being optimistic in this area - I thought that once it peeled, it would heal and that would be that. Not so much. How many layers will it take (there may be a very off-colour joke about the centre of a Tootsie roll there - but think it up and laugh all by yourself - I've helped all I can!)  'Unmentionable' places are also still very tender. Loo breaks can be a wee bit painful if I'm not paying attention.(see what I did there? *wink/smirk)

The pain comes and goes. During my absence, the front of my Fred leg (right) became very burnt and just incredibly painful. I couldn't even touch it. I got some amazing numbing cream from the hospital that helped, but I don't need it now, thank goodness. It's now just feeling a little bruised, so as long as I am careful not to hit it onto anything it's really not noticeable. But what is noticeable is the pain on the inside of my leg. It's really hard to describe, but it's almost like the outer skin and fat(and we know there's plenty of that!) are numb and the inside muscle is all bruised and battered. Fried more like it - but it feels more bruised. Fred also feels bigger and angrier - I guess we all would be a little ticked if we were radiated, hey?

So that's it for the SE. Kinda still the same, but just a bit better (besides the BMs)

And now just the cutest picture of how my honey brought me my yogurt this week - I know you are so very jealous!

How adorable is this?

Till tomorrow sweeties,
Hugs
Megan

So I've started to peel

... also to pee - but didn't think that you'd keep reading if I put that in the title!

The peeling is in the sensitive area where your pubic hair (if you have any!) meets your leg - shall we call it the bikini line?And it's painful people, painful. Also - don't believe that story that it's like a sunburn. No way. More like the burn that you get when you sit in the oven for an hour! And rather than a red burn, this is a brown, burnt skin. Not fun at all.

And the pee? My poor bladder is not liking this last bit of radiation and is making it known by leaking all the time. I even had to buy Poise pads (Depends.) Humiliation complete.



The good news though, is that spring is almost here, I only have 2 days of treatment left, and my nails look fabulous! See -

The bulbs in the front also pushed up through the ground this morning. It makes me happy. I'm ready for winter to be over and for the weather to warm up. More ready for the radiation to be over. It seems almost impossible to imagine what life will be like without the daily trips to the hospital. But I'm more than willing to find out! I'll have plenty of time in the mornings - come and visit me!

Until next time

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

The Sucky Suck Sucky McSucky Day!

I know - I can hear you - "Well -obviously this is a gross understatement"!!!!!!

I've told you a million times before - I don't exaggerate!

Hmmm - so it's probably not the worst day ever - but it was a pretty terrible rotten no good very bad day.

So Tuesday's treatment started out pretty promisingly. All of the 'films' (x-rays) were lining up, right until the very last one. Then it went all pear shaped.

My therapists just could not get me just right. So I was on the table for about an hour. And I was pretty potty about it too. Not pretty in "Oh isn't this orange shirt so pretty?" (a Southern USA accent helps here), but more like "Oh, isn't this week old, brown, grotty snow just so pretty?" No accent needed here, but imagine a deep sense of sarcasm will help immensely!!

Sometimes I let myself get a bit too invested in things that may or may not be grounded in reality peeps. This is my confession! After my super quick treatment on Friday, I just assumed that we had it down now and that all of my treatments would be zippy. Like I said - nowhere near grounded in reality.

And I think that is what was really getting to me. Because quite honestly, the last two (Wednesday and Thursday's) treatments have been the same level of suckiness. Maybe even worse. But once I had a reality check (ha - that might be the first time in the history of forever that I've been able to use that phrase correctly!), they just haven't seemed so bad. 

Don't get me wrong - there is nothing fun about this process. But I am coming to terms with spending an hour on the table every day. And I just keep reminding myself that this is all to save my leg - so I can run a marathon! I'm coming to terms with the Olympic dreams fading away.... hahahahha. 

And on other fantastic news - we are one third of the way done! Yay. Party time peeps!!

Till the next time - where there may or may not be Too Much Information,

Hugs

Megan

One week down peeps!

Didn't that go by quickly? (we are NOT talking about the five more to go!!)

After the horrible experience of the first treatment, we have settled in to a more manageable routine with my technicians. They are fantastic - which is probably good seeing as they have to see my naked butt every day!!!!

The worst part of the treatment is still getting into the right position for the treatment. We giggle and wriggle and move me around millimeter by milliliter. Then the x-rays start and I'm moved around a bit again millimeter until I am in the perfect  spot to finally get my treatment. They still don't hurt, or feel at all, but I am starting to get some side effects. My skin has started to get a bit pink, and I'm starting to get some fatigue. But by far the worst side effect has been the nausea. Horrid.

Enter Zofran - my new best friend! This wonder drug keeps the sickness at bay so that I don't feel like I need to chuck every moment of every day.

I haven't had a cup of coffee for FOUR DAYS!!!

I just feel dead - I really hope you haven't spoken to me over the past 4 days!!!

I am hoping tomorrow will bring me a cup of joe - I miss my best friend!!!!!!

Boy - it's been painful for me anyway!!!

I am also getting a bit sore in the hip joint - so walking, especially right after the treatment, is painful. I look like an old lady. Helped immensely when the Doc today suggested I may need to use a walking stick if my leg keeps 'collapsing' on me. (That happened yesterday afternoon - luckily the Princess was with me and could keep me upright!)

I may need to start my own collection.

So there's the first week in radiation. Sucky - but not as bad as it could be.....

Stay tuned - there is far more than you ever wanted to know coming up!!

Hugs

Megan

I like Mondays too

Welcome to 2014.

Here's what we saw last night Downtown with Willie and John. Good job Denver - I was pretty impressed.


I've been waiting for this day for quite a while. Goodbye to the year of horrors - I'm ready for a new start.
I've always loved a new beginning...
- a new pencil
- especially a new journal
- a new month
- a new week (hello Monday!)
- a new morning
- even a new pack of chips is better than a day old opened one!

So of course, the start of a new year is like the Grand Daddy of all new beginning. (do not let me start about how exciting it was for the start of a new millennium!!!!)
I love the possibilities that all this newness offers. I set goals - NOT resolutions (and that's really because they don't usually change from one year to the next) and I've got a brand new set of 365 days to get them all done! Don't bother asking why it needs to be a new year to start on some of these, it's just easier to get my head in the game.

one of them is to turn the calendar every day!

And of course. as we know!, things don't always end up the way that we imagine that they will. There is just no way that this time last year as I was dreaming about all of the possibilities that the year offered that I thought it would end with me getting ready to have radiation treatment.
But even after the year of suckish proportions that we've just endured, I still look forward to this year as one that will be one of the best ever.
Regardless of what happens, regardless of how the year ends, I've just decided that this will be a better year.
Radiation is only 33 days out of this 365 - that leaves me 332 to make it a year to remember.
I know that you are dying to know what sort of goals I've set (just pretend you care, k?!) so here they are:
- finish my first half marathon (Colfax in May)

the half runs through the zoo - how much fun is that?

- to Kill Fred Dead - duh!

this is what I imagine Fred looks like - I'm sure it's nothing at all like this, but I need a visual!

- to get into my healthy weight range via Weight Watchers

love this program. I go Friday mornings - meet me there?

- to finish level 347 on Candy Crush (I always give myself something that's really silly easy!!)

it's been about two and a half months now... I'll get it eventually!!

- to read through the Bible (I used to do this every year, but have done different reading plans for a few years now. But I miss it - some of the people in there feel like old friends and family to me!

I use a Bible reading plan that NIV had in the Student Bible - some OT, NT and a Psalm or Proverb every day.

- to get some real definition in my arms - hello shake weight!

yep - that's what I aim for.. got the crazy down already!!!!!

I've got some other more personal ones also, they may or may not show up here... oh the suspense may kill you!!!
So there you have it - a new year. Love it

Hugs
Megan