FEBRUARY 24, 2013

Hot Flashes Aren't Fun

Well, I figure if hot flashes are the worst thing I have to complain about, I can't be too bad off.  :)

The symptoms of having my last ovary removed have started kicking in, and the hot flashes are in full force.  They are awful, but I'm on some meds to try to mitigate them.

Let's see if I can explain the hot flashes.  It's definitely interesting.  I'll be going along in my life, and suddenly, I'll feel the hot flash coming.  It usually starts in my face, and it feels like it used to when I was working out...you get that sweaty, hot-from-the-inside feeling.  It then kind of moves down through my body, and I start to get sweaty all over.  (Sexy, right?)  It's not a gross, I need to shower sweaty.  It's just a warmth all over my body, as if I've been standing in a fairly warm room for too long.

Sometimes, I can be found fanning myself, trying to relieve the heat.  I've been found standing in front of a fan, wafting my shirt to try to cool my body down.  My mom recommended a cold washcloth on my neck, and I'll try this to see if it helps.

This lasts for about 15-30 seconds, sometimes a minute, and then it's over.  And, then, I get cold.  Bitterly, ridiculously cold.  The sweat starts to cool my body, and my internal body temp starts to regulate, and I shiver.

It kind of sucks.

I had a follow-up with my Gyn Onc this week (surgical follow-up), we talked about this, and agreed that starting me on estrogen pills (lowest level for now) was smart.  I am going to pursue some other testing, too, to check the other hormone levels in my body and to see if there are some other things that I need to be monitoring.

I also had a follow-up with my pain doctor this week.  Long story short, the pain may be caused by nerve irritation due to muscular inflammation.  He put me on a long-lasting anti-inflammatory, and so far, I can't complain.  I've slept through the past two nights, for the first time in months, and I'm grateful for it.  He is talking about doing a nerve block to help relieve the pain, and I'm all for this.  This may get done this week, depending on his schedule.  I can explain more about this later, when I have time.

My massage appointment on Friday went well, too, and she concurred with the cause of my pain.  She and I worked together (well, she worked - I groaned in pain and tried not to jump off the table) to loosen up some of the muscles that are ridiculously tight, in an effort to relieve some of my pain.  So far, it has helped, or it appears to.  I'm moving around more, and I feel a physical and mental desire to do more with my body.  I've been doing a lot of stretching on my lower back, butt, and legs, and that seems to be helping, as well.  Although, now my body wants to do more.  In my head, I want to go to the gym, get out and walk/run, etc.  I know I can't quite yet, but I'm grateful for the desire.  It will only continue as I start to feel less pain (esp. if we can get the pain block done this week), and I'm very much looking forward to getting back to being more active.  I'm hoping that I can run in the Undy 5000 this year, and maybe, maybe do more.

And, with that, I'm going to publish this post and get to today's activities, which include a birthday party for friends, Girl Scouts cookie booth for Jules, and laundry.  :)

Comments:

Akemiko said...

Michelle, in about 15 years your body will adjust - until then HRT next best bet! Welcome to the world of the post-menopausal.

February 26, 2013 at 8:57 AM

 Carol Pack Urban said...

I used the Estradiol patches for six months and then quit. The daRn things would not stay on my skin.

In the beginning, after my hysterectomy, I had mood swings and bouts of crying plus night sweats but I've had none of that since I went off the hormones.

February 26, 2013 at 10:31 AM

FEBRUARY 20, 2013

Waiting Game...again...

Well, as some of you already know, my bone scan came back negative.  This means that there was no mets to the bone, and that's a HUGE relief.  I am trying to remember this, as I'm sitting here waiting for my CT scan.

So, on Monday, we got the good news that the bone scan was clean.  We also got the not-so-good news that my CEA is back up, up to 5.5 this time.

Forgive me my cursing, but F*CK!!!!

Dr. K. came in and (for lack of a better term) dumped a bunch of information on me.  It was, honestly, an overload of information about possible scenarios, all of which will depend on the results of the CT scan today.  Long story short, there is a lot riding on this CT scan.

I won't go into the details that Dr. K. dumped on us on Monday - suffice it to say there was discussions of clinical trials, radiation, chemotherapy (the dreaded Oxalipalantin, which did NOT make me happy)....yeah.  It was hard to remember the good news about the bone scan.

So, I'm trying to keep positive.  Whatever happens today, I know I'm in the right place to take care of it.  I'm hoping nothing, nothing, nothing shows up on the CT scan, and the CEA is elevated because of my back bothering me.

Oh - that's another thing that we will be discussing.  If it's not bone cancer that's causing me so much pain, why is my back still bothering me so much?  Why is it that I'm still on pain meds, and not able to function normally?  And, why aren't we treating the cause of the pain, rather than just mitigating the symptoms?

Can you tell I'm struggling a little bit today?  It's been a rough couple of days....I'm really, really trying to stay positive, but I'm absolutely dreading the phone call today with the results.  I could wait two or three weeks to get them, but I don't think I can handle that eternal waiting, the anxiety, the emotional turmoil again.

Right now, I'd rather know what we're dealing with (even if it is another tumor, or tumor growth) than to not know.  Somehow, that NOT knowing is almost worse than the knowing.  And, by getting answers, I'll be able to process what's happening, and what this all means.

So, please keep the prayers coming today.  My CT scan is in a couple of hours, and I'll have results today.  I'll update (even if it's a short "Here's what they found...") later....

Comments:

Carol Pack Urban said...

I've forgotten how many hours you are behind us here on the east coast. Waiting on pins and needles until you update again!!!!!!!

February 20, 2013 at 2:46 PM

 Thandi said...

Scared...Anxious...Worried...Hopeful...We're waiting with you...From South Africa with love.

February 21, 2013 at 3:42 AM

Later:

Woot!!!!

Quick post - I'll update more later.  Got the CT scan results - all of the existing cancer nodules are still stable and normal, and nothing new has popped up.  There is one lymph node that has increased in size (from 1.4 cm to 2.0 cm), but that could be from the surgery, as it's near the surgical site.  The doctor isn't worried about that, but we will keep an eye on it.

I talked with Dr. K., and it looks like I'll be going onRegorafenib, which is an oral chemotherapy and will be used to keep things in check.

More later - we are on our way to take the kids to dinner and Julia to Girl Scouts....in a very relaxed manner....

Comments:

Carol Pack Urban said...

YAY!!!!!

February 21, 2013 at 8:43 AM

FEBRUARY 14, 2013

Bone Scan DONE!

Well, the bone scan is done....I don't know what the hell I was worried about.  Honestly - that was probably the easier of the tests I've had to do.

Forgive me for the scattered, rushed manner of this post.  I'm tired, and I just wanted to update this here before I forget.  :)

This morning, I woke up and, honestly, felt really good.  Yes, I had pain.  But it was manageable, and I was distracted by getting the kids ready for school, getting myself ready for the day, and getting out of the house on time.  That may have helped me.  LOL!

We got the kids to school, after surprising them with some Valentine's Day decorations and gifts, and then headed down to CTCA.  Levi was able to go with me, which was especially good because I was worried about the meds they may give me to mitigate the pain during and after the bone scan.

The nurse assessment of the bone scan was pretty standard, and very quick.  After some back and forth about the blood work, we moved forward with the injection for the bone scan.  Basically, the back and forth about labs was my doing....they were going to pull the blood for standard labs (CEA, CBC, etc.), and I asked them to hold off until Monday.  If I know they pulled the labs today, I would be constantly thinking about the results, which I can see online.  And, if I knew they were there, I was going to look and (potentially) freak me out.  So, in my continuing quest for blissful ignorance, I asked them to hold off until Monday.  I totally understand this is denial, but it's MY decision, and it's MY denial.  :)

Anyways, they injected me with the radioactive bone stuff, and Levi and I had to figure out how to occupy ourselves for three hours.  Well, we started out with brunch - yum! - and then took a walk out to the farm behind the hospital to take a look.

Because today was Valentine's Day, the hospital had some events going on to celebrate, so we took part in those.  It was definitely fun, and I was glad to finally be able to share some of this with Levi.  My back started to bother me around noon, so I took some Advil, and hoped for the best.

The tech came out at 12:30 and took me back.  I was anxious, nauseous (from nerves), and just completely overwhelmed.  Luckily, my amazing wonderful fabulous care team was already ahead of the game, and had placed an order for low-dose IV Ativan (one of the nausea drugs that I don't react badly to, that also helps calm me down), if I needed it.

I did.

It helped me calm down, helped ease my nerves, and allowed me to relax enough that my back didn't bother me as I was laying on the (very uncomfortable) table until the test was almost done.  This was wonderful, and really made the test that much more tolerable.

After the many, many scans were done, I headed out and went to chiro.  After a brief appointment with him, Levi and I headed home to get the kids and relax for the rest of the night.

All in all, it was a fairly uneventful day, which was really, really nice.

I did ask more about the bone scan, to understand what they were doing, what they were looking for, etc.  Here's what I found out.

What I was is known as a nuclear med bone scan.  The injection that they use is a radioactive material that is taken up by the body, and (after the three hour waiting period), will also be taken up by the bones.  When they do the bone scan, the bones will show uptake normally.  Areas that show a greater amount of uptake indicate a concern, which could be infection, cancer, a break or bruise in the bone, etc.

Here is some information I found online about the bone scan.  All I can say is that I was totally worried and anxious and concerned and freaked out about what might have been the easiest test I've gone through in the past five years.  I'll take it.

I'm off to bed.  I've had a good day, pain-wise, and I'm happy about that.  I'm hoping that tonight is an easy night, and that I have a few more good days ahead until the next bad one.  I'm learning to take it day by day, and to take the good with the bad.  There's a lesson here, I'm sure of it.  But, I'm too tired to try to parse it out in words, so we'll make that another post.

Until then.....sweet dreams, my army.

Comments:

Carol Pack Urban said...

I am so very glad that your day was a good one and that pain was manageable! <3 God bless you, hon.

February 15, 2013 at 6:50 PM

FEBRUARY 12, 2013

One of the bad days...

I've tried to be fairly honest on this blog, and have tried to balance the good, positive, upbeat posts with the not-so-fun posts, but I feel like, lately, I haven't posted because I didn't want to see like a complainer, like someone who can't find the positive in life, who is a "Debby Downer..."

Well, today?  I made a decision.  This is my blog, I'm having a rough day, and I'm going to post about it.

So, yesterday, I was fairly sedentary.  I sat for a good portion of the day, and I'm paying for it today.  I paid for it last night, and I'm *definitely* paying for it today.  My back is killing me.

Over the past few days, I've had some relief from the ongoing back pain. I don't know that it's ever completely gone, but it lessens enough that I'm able to function without constantly thinking about it.  I have been sleeping better (waking up once, able to take some pain meds and pretty much go right back to sleep).

Last night....not so much.  I was up around 2:30am with (because life sometimes really, really sucks) a hot flash that lasted what felt like 30 minutes, and back pain.  I threw the covers off and tried to cool down.  This is a cruel joke, because when you have a hot flash, you sweat.  Then, when you start to cool down (or, more accurately, when I start to cool down), I then get cold.  *sigh*

And, I couldn't get comfortable.  The back pain increased, so I took two Advil.  Usually, this is enough to calm the pain and to allow me to get back to sleep.  Last night, my body had other plans, and by about 3:30, I decided enough was enough, and I got up.  I used my corn bag on my back to release the muscles a bit (and proceeded to burn my back in the process....my own fault, but...damn it!), and sat up to watch Diners, Drive-Ins and Dives (one of my favorite television shows!!!).  So, it wasn't a complete loss, I suppose.  :)

Once I was able to take my meds around 6am, my back started to ease and I was able to function.  However, as the day has worn on (and I did not sit still today, as I am trying to keep active), my back is still bothering me.  Advil hasn't helped, at least, noticeably.  I did have a conversation with my Care Manager Vicki, and she asked me to go off the Oxycodone and back on the Vicodin.  So, I just took one of those, and I'm hoping, praying for some relief.

I don't know if I can describe the back pain.  I guess the best way is that it's a constant, grinding ache in the lower-most portion of my back, in the hips area.  It's just above the pelvic area, and had started (joy of joys) to creep around to the front a bit.  The front-ish pain feels more like cramping (ladies...you feel me...), which is again cruel, since I don't have the parts that would cause me to have cramping.

The ache is not like muscle pain that I've had in the past (at least, the muscle pain from working out that I remember).  Honestly, that's what has me worried.  I have had some back pain creeping up my back that was definitely, clearly muscle pain.  I think that's as much my body reacting to my pain level as anything, at this point.  Those, I can handle, since they seem to be pretty quick and go away in a few seconds.  They are almost spasm-like, and have happened more at night than any other time of day (usually, as I'm getting ready for bed).

I spoke with a fellow survivor today, and started to get fairly emotional.  This bone scan has me worried.  I'd be lying if I said otherwise.  There's a lot of unknowns - the unknown of what the test is going to be like.  I spoke with someone in radiology today - the test should only be about 20 minutes, and when I have the nurse assessment on Thursday morning, we can make a decision (based on how I'm feeling that morning) on whether I need additional pain meds to get me through laying on that table for that long.  I know that 20 minutes doesn't seem like a long time, but when you are already inn pain and have to lay on a very solid, very uncomfortable table for that long.....20 minutes can seem like an eternity.

There's the unknown of what happens if the test comes back showing cancer spread to the bones (and, along with that, there's the *known* of what this means for my long-term prognosis...).  There's the unknown of what happens if the test doesn't come back showing cancer - if it's not mets to the bones, what the hell is causing me this much pain?  And, if it is mets, what do we do about it?  Radiation?  I haven't had that - there's another unknown.

Yes - I think, right now, I'm using the word "unknown" as a way to describe "fear."  When I was re-diagnosed in March 2012, and I knew I was going to go through chemotherapy again, I *knew* what that meant.  This time?  I have no idea what radiation will be like, how it will feel, what side effects I'll experience.  Will I react to the radiation as strongly (from a side effect stand-point) as I do with the chemo?  *sigh*  Good God, I hope not....

I just get emotional when I think about where I'll be a week from now.  I'm assuming I'll have answers.  What if I don't?  That's almost as scary as having the answers.

I am still optimistic - I know I'm where I need to be.  I know for a fact that, if there's something to be done to help me fight this effing beast, CTCA will make sure I have access to it.  But, I'm so damn ready to be done with this, to be back in remission and to live a normal life again.

Maybe I'm not meant to.  Maybe this is my journey, and I have great things to do.  Maybe I'm just meant to be a voice for those of us fighting.

Oh, what I wouldn't give to know for sure.  But, I know that's not meant to be.  So, I'll do my best to keep my head up, my tears hidden from the kids, and my spirits high....

Meantime, I think I'll do some internet window shopping.  I'm in the market for new glasses and a new purse.  The glasses are good - thank goodness for good vision insurance.  The purse?  Yeah - the ones I like are *very* pricey (by my standards)....so, I'm off to check etsy.com and see what I can come up with.  :)

Right after I pick the kids up from school.

Comments:

Carol Pack Urban said...

Can you talk with Tina Korsmoe about radiation? She had rad treatments with colon and again, I think, with breast cancer.

My mom also had radiation and other than the feeling of burning she said it wasn't intolerable.

Is it possible this is recovery pain after surgery? I know I had horrendous, horrendous wanting to kill myself pain after my hyster last year. It lasted a good three months after.

When you go for the bone scan I think you should have a valium before hand so you're relaxed and not feeling pain.

February 12, 2013 at 4:10 PM

 Natteringnic said...

I have nothing profound to add...I worry that my words might be construed as an attempt to minimize yours. Your words that are so true and unvarnished.
I'll be thinking of you tomorrow.

Keep Hangin Tough lady! We're all listening, praying and pulling for you!

February 13, 2013 at 8:08 AM

 Akemiko said...

Michelle,
In supporting you the Cancerellas will be wearing blue and Michelle Will Win tee-shirts. Hun you are in our thoughts, hearts and prayers.
Mwah!

February 13, 2013 at 3:06 PM

 Tina said...

I'm so sorry you are having so much pain. I hope you get some answers and RELIEF soon.
There are different types of rad treatments for spine/bone mets. New, cutting edge stuff that only takes a few treatments. It's good that you haven't already had rads, because if you do someday need it, you won't be limited by your previous exposure. But...praying you won't have to think about any of that! Keeping you in my thoughts, as always. *hugs*

February 13, 2013 at 5:42 PM

 Joan Bardee said...

You don't know me; I stumbled upon your blog. My heart goes out to you and I hope you get answers and relief soon. blog away -- you deserve it.

February 13, 2013 at 6:59 PM

FEBRUARY 6, 2013

Amazing...

I had to share this here.  One of my childhood friends, Jena, and I have reconnected on facebook.  She's married to a wonderful man who's currently deployed to Afghanistan.  She worked with him and sent me this picture yesterday.

 Jena's message: 

Michelle...I was trying to think of something to lift your spirits.  :)  

So...with my husband's help, here's your "other ARMY".  Love you!!!!!!

Freaking amazing.  

I saw this yesterday when I was sitting down to get lunch at CTCA.  I started crying, and every time I look at it after, I couldn't help but tear up.

Dave is serving our country, fighting for our freedom, and he took the time to do this.  For me.

I am so amazingly blessed.  

Please remember our troops, and their families, every day. Pray for them.  Think of them.  And, support them when they come back.  They need us, and we need them.

Comments:

Carol Pack Urban said...

That is so wonderful!

February 6, 2013 at 9:17 AM

FEBRUARY 4, 2013

Back Pain Update

Well, I'd be lying if I said the last week has been easy.  It hasn't been.  My back pain isn't easing much at all, despite the docs tweaking my pain meds again.  I've started keeping a fairly detailed journal of my back pain, when I'm taking my meds (this is so I don't forget...), and what I'm doing each day so I can figure out what helps, what doesn't, etc.

It seems like, for ever good day, I have a bad one.  I don't care for that at all.  I just want a whole bunch of good days....I keep moving forward because I know, eventually, I'll get back to being pain-free.  I've found that movement helps - for example, Saturday, I was fairly sedentary.  I went to a Stupid Cancer gathering, and sat in a (very comfy) seat the entire time.  And, the drive there and back was 45 minutes one-way.  *mental head slap*  I think I would have been much better off had I stood during the gathering.  But, lesson learned.

Yesterday, I took Julia shopping.  She and Levi are going to a father/daughter dance on Friday night, and I wanted to get her a new outfit. 5 hours of shopping later (and only two shirts....do you know how difficult it is to shop for a tweener?), I was exhausted and in a small amount of pain, but I felt good enough to make dinner and do laundry last night.  I paid for it when I tried to go to sleep, but - is that because of the movement?  Because I overdid it?  Or just because of the freaking pain and whatever is causing it?  There's no way for me to tell.

Needless to say, I'm following up with my care team today at CTCA and we'll see what they have to say.  I don't know what else can be done except to either increase my current meds, or to shift some things around. Honestly, I don't care for either option.  I don't want to be on this many pain meds.  I hate having to live my life by the schedule of which pills I need to take when, but right now, it's a necessary evil.  And, one that I have to abide by, because otherwise, I'm a curled-up mess of pain and tears.  (How's that for a visual?)

In spite of this all, I'm trying to just go along with everything and do what needs to be done.  We are all getting back into a routine of (modified) life, and it's been so nice.  I see a huge difference in the kids - there's a sense of normalcy back that we all needed.

Of course, there's always this huge question in my mind, as I fight through the pain.  Is this caused by the cancer spreading to my bones?  Or, is it (hopefully) something less sinister, something more mechanical or physical that will require some PT?  This is always, always in the back of my mind.

How could it not be?  If this cancer has spread to my bones....well, it isn't good.  I don't feel like it's "go home and get your affairs in order" bad, but it's definitely not "you're in remission" good, either.  Which effing sucks.

I'm trying to get my head around this.  I don't know how I'm going to, until I have answers.  It's not something that I dwell on - it's not worth it.  Giving in and worrying, fretting, panicking, is - in my opinion - letting the cancer win.  Instead, I am living my life in spite of what *may* be happening in my body.  I have faith that that, regardless of what's going on, my care team will take the very best care of me, and I'll be okay.  I don't know what okay means....for me, I think it means that we'll tackle whatever the testing shows, and I'll continue to LIVE.  Because, really - that's what I'm fighting for.  The ability to LIVE....

Anyways, I digress.  As I said, it's been a long week.  Just....tiring.  I don't think I ever really appreciated how *exhausting* constant pain can be.  I have a new appreciation for what family and friends mean when they talk about being in constant pain.  It's beyond tiring - it wears on the body and on the mind in ways that I don't think I fully comprehend yet.  For me, my lower back aches constantly - it's just a low-level ache that doesn't ever completely go away.  When it spikes, it becomes a much sharper stabbing-type pain (in addition to the aching).  Big fun.

I don't want this to sound like it's all bad.  I'm recovering from the surgery well, and I'm feeling okay.  There has been some movement on some other things I'm dealing with and I'm seeing progress overall.  It's just frustrating, this being in limbo, being in constant pain.

And, not working, not being able to function completely.  I'm better than I was, so I need to remember that.  :)