AUGUST 19, 2011

'Bout that time...

So, this week I realized that I have an upcoming appointment with the oncologist, and yet I haven't had my PET or my colonoscopy.  I called the onco's office, and apparently my health insurance is being a little more difficult about approving the referrals for these tests.  The doctor's back-office coordinator has submitted the request 4 times, and each time the insurance company keeps coming back with a reason why they need her to re-submit.  Not good.

Not sure yet what this means, but it has me a little worried.  I'm just hoping that I hear something back soon.  As it is, I had to reschedule my appt with my doctor to accommodate the push-out of the PET and colonoscopy.  I'm hoping this doesn't keep pushing out.  I really don't like having the tests done (well, the colonoscopy more than the PET), but I'm much happier knowing that we are on top of everything and being proactive, rather than waiting for something to surface and then trying to figure out what's causing the issue.  I get so nervous this time of year, and the waiting is by far the worst part.  Well, unless I get bad news, which will obviously trump the waiting.

Anywhoo, I'll be making yet another phone call to the drs office today, in the hopes of getting an answer on when I can get my tests done.

*sigh*

I can't wait until I can go two years between these things.  But, I have to have a clean colonoscopy three years in a row to allow that to happen, and I haven't even had one.

Stupid cancer.  I just want to live my life.

Wait - I am!  Take that, cancer!

Comments:

Carole said...

Awww Michelle,

Really sorry to hear that you have to have this added stress. As if the actual tests aren't already stressful enough...

Here in the UK we don't have the insurance issues that you guys have, as long as the Doc says you need this test, you get it.
However I'm sure our current government would change things if only they could.

I'll be hoping for the cleanest, clearest colon ever for you - keep us posted
Much luv xxxx

August 19, 2011 at 1:41 PM

 Whidbey Woman said...

Hope all works out! Ron has a scan Sept 1st. So we share similar anxiety.

August 21, 2011 at 1:53 PM

AUGUST 16, 2011

Soap Box....Again, and other things.

Two articles managed to piss me off this morning.

This one tells of the decision by the mayor of New York City to exclude first responders from the 9/11 ceremony this year.  They have been specifically excluded.  In past year, they weren't invited, but they weren't turned away when they showed up - they were allowed to attend, mourn, remember, and heal.  This year, they can't attend.  Apparently, Bloomberg has decided that it's morally okay to exclude these heroes due to space constraints.  Really?  Hard to imagine.  I think that it probably has more to do with the fact that they don't want the ceremonies to be tainted with the in-your-face reality that the very people that helped save countless lives and recover the bodies of those killed that day are now suffering unimaginable health problems, from PTSD to cancer.  And, they don't want the ceremonies to be a reminder of the fact that the government is denying those first responders coverage for their cancer, on the basis that there isn't enough documentation to prove that there is a direct link.

Can you see the steam coming out of my ears?  My blood is BOILING!  As the daughter and sister of fire fighters, and as someone who has many, many friends that risk their lives daily trying to keep us all safe (fire fighters, police officers, etc.), I am beyond livid that this is considered a valid reason to a) deny these people coverage, and b) deny these people their rightful place at the ceremonies to remember, honor, and mourn what happened 10 years ago next month.

The other article that got me going this morning was in regards to the stage-four breast cancer survivor in North Carolina that just custody of her two children on the basis (at least in large part) that her cancer diagnosis is unknown and that the children are better off with the healthy parent than they are with the ill parent.

*sigh*

I really have tried to see this from all sides.  I understand that there are so many other facets of decision making that must go into a decision like this.  I also understand that since I'm not one of the parties directly involved in this decision, I can't possible know all of the details.  Having said that, to use a person's cancer diagnosis as the justification for taking the children (who have been in the primary custody of the mother for the majority of their lives, based on what I've read) away from their mother is terrifying, infuriating, and a downright #$*(#&$ SHAME.  I can't imagine what kind of precedence this sets, but as a cancer survivor, it absolutely terrifies me.  I've never felt much discrimination (or threat thereof) in my life - I've been very lucky in that sense.  However, having this looming beings all sorts of emotions to the surface, and makes me seriously rethink some of my own personal beliefs.

On a lighter note, I'd like to update you on roomie, a.k.a. Eden.  My last post asked for your prayers - well, I'm so happy to let you all know that Eden is now home, and is working towards recovery.  She walked the other day, is in PT and OT, as well as other rehab therapies, and is currently seeking acceptance into Sloan-Kettering in NYC (stupid Bloomberg....ahem) to try a new therapy.  Good news - such good news.

And, with that, I'll end this blog post.  Another one is soon to follow - you'll see why they need to be separate.  :)  

Later:

New School Year

Somehow, the summer flew by and it's that time of year again - school started yesterday!  I'm not really sure how it happened, but I now have two school-age kids. 

Julia started fourth grade yesterday.

Kevin started kindergarten yesterday.

My babies are growing up.  

Can you believe how bug they are getting?  

Yesterday was one of the first times Levi has been in town to see Julia off on her first day of school.  I'm so glad he was able to be here, especially since it was Kevin's first day of kindergarten.  We were both able to take the kids to school, hang out with them as they got the lay of the land, as Jules found long-lost (well, since May) friends, as Kevin started navigating the playground and tentatively meeting new friends.  And, Levi was there to hold me as we walked off campus and I shed a few tears, realizing that my babies are, indeed, only babies to me.  

Part of the reason that I was crying was that I inevitably thought back to this time three years ago.  I took Julia to her first day of second grade - we had moved that spring, and she was starting a new school.  It was also the first year I had to talk with other parents about my cancer diagnosis.  It was the year I had to go into her teacher and go into pretty extensive detail what I was going through, so that she'd understand the inevitable changes that Julia would be going through over the next couple of months.  It was the year that Julia kept green army men on her desk when I was in chemo, as a reminder of why Mommy wasn't feeling too good that day.  *sigh*

It's amazing to me to look back at where I was three years ago.  Trying to make it all work - chemo, side effects, work, kids, etc.  I had help, but even now, thinking about what I was going through is exhausting.  To know that I can now, thanks to what I went through, be free to do what I want - well, it's pretty freaking amazing.

So, yes, there were tears shed.  I think the most of them were shed when I realized, with a thump in my chest, that if I hadn't been tested, I wouldn't be here to see this happen.  I wouldn't be around to get my kids dressed, to pack their lunches, to send them off with hugs, kisses, and a few salty tears.

How's that for a pretty amazing thing to think about?  

The kids wanted a picture making funny faces - I obliged.  Jules is crossing her eyes, and Kevin's being goofy.  This is the perfect picture of them.  :)  

Comments:

blog said...

I love her haircut! And I am always impressed by the green army men, no matter how many times I hear/read about them. Such a great, tangible reminder!

And it goes without saying, but I'll say it anyway — the four of you aren't the only ones glad you stuck around to see them off to school yesterday! Here's to health!

August 17, 2011 at 9:24 AM

JULY 22, 2011

Roomie needs some love....

When I was in Austin last year for the LiveSTRONG retreat, I met Eden.  She was my roommate, and my first impression of her was, "Woah - I should have dressed up."  Eden is a lawyer, and dressed impeccably all the time.  I've never seen her (or a pipcture of her) where she wasn't dresesed to the nines, in a gorgeous dress or suit.  I walked into the room with khaki shorts and a tee shirt - it was sort of funny!  I can't imaging what she thought of me. 

She was a stage 4 breast cancer survivor, and while we didn't have much in common (she is a litigation lawyer, has no human kids [only 4-legged furry ones], etc.), we hit it off.  She's an amazing woman with a fight in her that's so admirable.  Please read this article that is on the front page of the St. Petersburg Times this morning, featuring her love story with her husband.  It's truly inspiring.  

This is Crystal (another amazing woman), me and Eden (on the right) at the retreat last year.  We were lounging by the pool before dinner.  :)

Eden is struggling right now.  She's in the hospital and her blood counts are WAY low (60 white blood cells in her ENTIRE body), her tumors have grown, and they don't know how much time she has left.  It's a very scary time for her, and I can only hope that she and her husband Cory have peace about decisions that they need to make. Eden's a beautiful soul and her love for Cory is true and lasting.  It's clear from Cory's actions in the hospital (as detailed in the story) that he feels the same way about Eden.  Love that pure isn't common, and it's usually once-in-a-lifetime.  What a gift they have both been given.  

I don't know what the next couple of hours, days, months will bring for Eden and Cory.  I know that I am blessed to have been given the chance to meet her, and to do my best to get her story out.  Eden, my friend,  I hope that you know how much of an impact you have had on the world, and on me.  Much love....

JULY 8, 2011

*mental head slap* I knew that....

The CDC recently released an article indicating that, with early and consistent screening, colon cancer deaths can be prevented.

*duh*

While I appreciate their acknowledgement of this most obvious fact and the emphasis on getting the word out there, I feel like the CDC is a little late with this information.  Additionally, the fact that they continue to educate the public that the screening age is 50 years old, while not informing folks of the importance of knowing the signs and symptoms, is infuriating.  I know I was in a minority - I get that.  But, I also know that the number of colon cancer diagnosis in the under-50 crowd is increasing year-over-year.  Why isn't this making headlines?

All right - I know I'm on a soapbox, and that my personal experience (and watching countless others in my peer group go through this) have skewed my viewpoint.  But, if I don't say it, and the CDC doesn't get the word out there, how in the hell are we going to stop these needless deaths from happening?

*sigh*  So, what am I going to do about it, you might ask?  What do you expect folks to do?  Well, I'd like to see the medical community jump on board with the information being provided to them.  One of the reports I read this week indicated that the reason more people aren't getting screened is that their doctors aren't pushing the issue.  Why not?  Because they don't know that this happens to many, many, many people each and every day.  I was SO lucky that my original doctor pushed me to go see a specialist.  Otherwise, I'd be 6 feet under right now, rather than sitting here, irate at the situation.

What would happen if doctors educated themselves more on the signs and symptoms of colon cancer?  What would happen if they didn't assume that colon cancer can only happen if you're 50 years old?  What would happen if they didn't assume that breast cancer is the only cancer a young adult female can get?  (Don't get me started on that one....)

What kind of overall impact could they have if they just took the time to ask the questions, seek out truthful answers, perhaps look at preventative healthcare as an option, rather than waiting until an issue becomes an emergency and acute care is the only option?

I have so much more to say on the situation...but, I won't.  Yet.  Suffice it to say that I'm going to keep talking  about my diagnosis, keep telling people that screening is key, and keep asking people if they know what's up their butt.  :)  I can't make an enormous difference, but I can certainly try.  And, I'll keep educating myself on the ins and outs of this disease, and maybe, MAYBE, help someone else out on their journey.

Comments:

Tina said...

great post Michelle! I am going to put a link to this post in my blog. I hope you don't mind--you said everything so well, I want to share it!

July 8, 2011 at 11:25 AM

 Whidbey Woman said...

Right on, Michelle!

July 10, 2011 at 7:31 PM

 openid said...

Hi Michelle,
My name is Liz and I have been following your blog for sometime now. I have to agree with your last post. I think it's absolutely crucial for people to understand that colon cancer is now being found in people way younger than 50 by far more frequently than before. I must also agree that it's crazy to know of this rising frequency, at least there are people like you to voice their concerns on the subject. I am happy to learn that you are doing better, hope that you keep on like that.
That said, since your blog is a great resource for someone going through cancer I wanted to reach out to you to see if you were interested in a new online social support network (that I am the community manager of!) called I Had Cancer. It is a new and free social support network focused on connecting people based on experiences with cancer so that they can easily communicate with one another and share information. I would love to tell you more if you are interested, so please let me know! Because I was so struck by your writing I would love to send you an early-access pass with extra invites for others you may know going through this journey.

Either way, thank you so much for your writing. Take care and best regards.
-Liz@ihadcancer.com
If anyone would like information on I Had Cancer please email me.

July 15, 2011 at 10:47 AM

 Gina said...

Hi Michelle, I just came across your blog and am quite taken with it. Thanks for sharing your story. I am working on a project called Dying to do Letterman and wondered if you might be interested in collaborating with us. Here is our website: www.dyingtodoletterman.com. If you are interested, please email me at gmdysert@gmail.com.

Thanks, and again, love your blog!

Gina

July 16, 2011 at 6:26 PM

 Carole said...

Hi Michelle,

Great post and so very very true.

In the UK doctor's are brainwashed into thinking that no-one under 60 yes, sixty!) years of age is at risk...

They do the faecal occult blood (FOB)test at 60 yrs here but NOT a standard colonoscopy.
You *only* get a colonoscopy here if they pick up blood from the sample test - many colorectal cancers do not bleed in their early stages.

I've been on my soapbox about this for some time. I'm so tired of hearing that "the statistics show that people most at risk are the 65+ age group" - when mostly everyone online I 'meet' is way under that age.
My rectal cancer was diagnosed at 49 yrs but my surgeon felt it had been present with no symptoms for anything up to 8 yrs previously.

At no point in my 40's did I think I would experience colon/rectal cancer because the information isn't out there for people under 60 yrs in the UK..

Well done Michelle, all we can continue to do is talk, talk, talk about it and hope, hope, hope that it makes some difference to someone out there.
XxXxXx

July 22, 2011 at 2:47 PM

 Bruce said...

Thanks for this post.

Colon Cancer Information

September 23, 2011 at 2:49 AM

JULY 1, 2011

NKOTBSB, sans chemo

I don't have a voice this morning.  And, it's totally okay.  I lost it to my boys last night.  They can have it.  It's a small sacrifice, in all honesty.  They can have my voice, as long as I continue to see them perform live.  I think it's a fair deal, right?

Up and at 'em, and I'm still stoked about last night.  I am so glad I didn't have to go to this concert by myself - my amazing friend Erin went with me, and we had a BLAST!  I was a little hesitant about the opening acts, but I was very happy to be pleasantly surprised.  I knew Jordin Sparks was opening for them, but they also added a new act, Ashlyne Huff.  She is adorable, really talented (singing live and dancing?  Yes, please!), and had some great tunes!  I didn't think I knew any Jordin Sparks songs, but I was wrong.  She's amazing live - gorgeous voice!  I can see why she won American Idol.

And then, after what seemed like a long 20 minutes set change, my boys came onstage.  *le sigh*  Oh yes, the screaming and jumping up and down began in earnest.  I bopped and danced and jumped and squealed and sighed my way through the entire show - I think I sat down for about 15 minutes of the 2-hour set.  It was un-freaking-believable.  I wasn't sure how the collaboration with NKOTB and BSB would work - oh, how I doubted.  How could two boy bands work together to bring two generations of hormone-driven girls to a screaming frenzy?  Oh - they did it.

My boys were, of course, amazing.  They just keep getting better and better with time.  And, while I wasn't ever a huge fan of BSB, I'll be downloading some of their music - love!  BSB was really good live - they each clearly have a talent that they nurture and cherish.  I loved seeing how they each had a niche within the crowd that they geared their performance towards.    For example, Brian is a dad with young children, and made sure he sang to, waved to, and called out the younger generation in the crowd.  *melt*

As I said, my boys.....ah, my boys.  I said last night that, when I first saw them in 1989 or 1990, I would never have imagined then that I could be blogging about NKOTB 21 years later.  And yet, here I am.  Swooning like a teenager, falling in love with a teen idol.  Except, these boys have become men (oh, how they have become men...), and they have aged beautifully.

When I was a teenager, I was a Joey girl.  Those beautiful blue eyes, that smooth voice (even through puberty), that curly head of hair.  *fanning self*  I cautiously liked Donnie, but it felt like a betrayal of my life's love to lust after one of his bandmates, so I kept my feelings hidden.  Now, however.....oh, I'm a firm member of both Team Joey and Team Donnie.  Joey - the husband, father, and still swoon-worthy singer.  Donnie - the quintessential bad boy, making grown women faint by ripping his shirt off during the concert last night (yes, I had to hold onto the table to keep my balance).  It's like they represent two sides of me - the responsible part of me that's a mom, wife, etc.  And, the side that's just damn happy to be alive, and willing to do just about anything to enjoy it.

On that note, I did enjoy myself last night.  Erin laughed at me, saying that my jumping and screaming was funny, reminding her of a kid on Christmas morning that can't wait to open their presents.  I'm not embarrassed - it's who I am!  She asked me to stop being so stoic when I'm around her and the other girls - I didn't realize I was doing that, so I'm going to make an effort to be more ME around them.  I suppose I still feel like an imposter in their circle of friendship (the newcomer, still feeling her way around everything).  However, time is short, I'm happy and healthy and blessed to have friends like this to celebrate with, and I'm not going to hold back any longer.  (Girls - you've been warned!)

With that, I'm going to end this blathering post and get back to what I need to do.  However, I will be making a stop at Best Buy today to pick up the compilation album to jam to later, and I'll be listening to my New Kids songs (as well as my new BSB songs) all day long.

*sigh*  I love days like this - remembering, just a little bit, what it's like to be 13 and in love with the seemingly perfect boys.

And, Donnie - oh yes, Donnie.  My husband and kids are not here.  Wanna come over?  *wagging eyebrows*  :)

OH!  Looking at the title, I remembered that I wanted to post about.  If you remember, the last time I saw my boys, I was on chemo.  I took Julia to the concert with me, and she wanted to leave early.  I was tired, and weak, and had the next day's chemotherapy session on my mind.  This time?  Oh - the energy level was/is 100 times better.  I stayed the entire freaking concert.  And, I shared this amazing experience with my wonderful friend.  Oh yes - I do love my life!  Take that, cancer!

Comments:

I'm Nic. said...

Dude...I *heart* NKOTB and Joe is my fave as well! I checked out the NKOTBSB show in Montreal a few weeks ago...NK 4 Eva!

July 4, 2011 at 6:36 PM