MARCH 29, 2013

It's okay to not wake up with a smile...

As I look at my blog, I realize that so much of it is positive, which is good.  I think, though, it's important to realize that life with cancer isn't always positive.

And, as I re-read that sentence, it seems obvious, but it's important to note.  I'm not always happy, and I'm not always smiling, and life isn't always rosy and happy.

This won't be a long post, but I think it needs to be said.  Life with cancer sucks.  It just effing sucks.  There are good things that can come, especially when you have the most *amazing* people on your side.  But, when push comes to shove and, like today, the side effects really decide to kick you in your ass, you understand how bad this disease and the treatment is.

Today, I slept in a little.  Normally, I am up at around 5:30am to get the kids up and ready for school.  Today, I slept in until 6:15.  And, regretted it from the get-go.  I didn't get my Zofran (anti-nausea) meds into me, which meant that my stomach was upset and ready to expel all contents.  I didn't get my pain meds into me, so my back started creaking and hurting.  Add those two together, life isn't pretty.

Then, the GI issues decided to kick in right on schedule, and between the cramping and the spasms of my bowels, the back pain, and the nausea....let's just say this morning wasn't pretty.  I survived, and the meds are starting to kick in, so I'm not nearly as pitiful, but it's a hard way to start a day.

To those of you who are blessed to be observers and not survivors, I beg of you - please don't judge anyone.  You have no idea what people are going through.  I will face this day with a smile, because that what I need to do to survive.  I have a few appointments this morning, and will be judging CTCA's Dress in Blue Day today at the hospital.  I will do so with laughter, hugs, and smiles.  But, I'll be very worried about when the next round of diarrhea will kick in, or whether I've eaten enough to ward off the nausea, or whether I've taken my meds at the right time.

I felt it was important to post about this for a few reasons.  Cancer is awful, but I realize that, if you're reading my blog, you might think that this is easy.  It's not.  It sucks.  I also think it's enormously important for people to realize that it's okay to admit to feeling sick, or to being torn down by what you're going through, or to just not feel up for anything.  Those are all normal, and okay, and valid.  Every single person has days when they don't feel good, don't feel up to something, don't feel like things are going their way.  Cancer, as I've said before, has a way of amplifying all emotions.

And, that's okay.  Just please, please know that it's okay.  Normal is relative - I've said that before, and I think it bears repeating.  Normal is relative, meaning normal for you is not going to be normal for the next person.

The sooner we all realize that, the better the world is going to be.

I'll end here, before I start off on another tangent.  I have things to do, and I need to do them while I feel better.

My labs from yesterday showed that my red and white blood counts have stabilized.  We are still on watch for them, but they aren't dropping anymore.  For now.  I'll take it - good news, however small, is worth remembering and celebrating.

Have a fabulous Friday, my army.  :)

Comments:

Carol Pack Urban said...

Agree with you 100 percent. Normal is relative. Just not in my family. giggle

March 29, 2013 at 8:22 PM

MARCH 26, 2013

Fatigue sucks...

Well, they warned me.  They told me that fatigue would kick in, and that I would start to feel tired.  I don't know what I thought, or how I thought that would feel.  I know I didn't anticipate this.

I am so damn tired.  It's not something that I can nap away.  I can't sleep for 10 hours at night and feel rested.  I don't think I can adequately describe how I feel right now.

The only other time in my life that I felt like this was when I was in my first trimester for Kevin, and I was making a person.

Right now?  I'm trying to kill cancer.

I got a phone call from CTCA yesterday.  They pulled blood for labs yesterday, and both my white and red blood counts are low.  It's normal and expected, but they are definitely dropping.  This explains why I'm so tired, and it's something that they will continue to monitor.  I have another appointment for lab work on Thursday, about an hour before treatment is scheduled.  I'm hoping that I don't need to delay treatment....

Tomorrow, I have radiation scheduled, and I'll be attending the funeral services for a friend.  Betty Rose DeCarlo was the first person I met that was also battling colon cancer.  She was a member of The Wellness Community, and one of the main reasons that I got into advocacy.  She had been fighting rectal cancer for 7 years, and had already came out of hospice once.

Betty Rose was a fierce advocate, and talked with every single person she met about colon cancer prevention.  She was wholly dedicated to early detection and to asking for second opinions.  She thanked every caregiver she met for their support of the patient, and for their dedication.

You may not have always agreed with Betty Rose's methods, but her heart was always true.  Everything she did was to make sure someone else's journey was a little bit easier.

Betty Rose was one of main people responsible for bringing the local CCA chapter to Phoenix.  What she left behind was a rabid group of people hell-bent on making the world a better place.  Betty leaves behind her husband, Ron, and her daughter, Kara, who is currently in her own battle with breast cancer.  My hope is that Betty Rose is finally at peace, her husband gets some well-deserved, well-needed rest, and Kara beats this beast.

Tomorrow will be heart-wrenching.  It will also be hopeful and uplifting, as we remember Betty's life, and promise to continue her work.  I hope that I can continue to make her proud.

Comments:

steffy said...

Stay strong and focused on the goal!

steph h

March 27, 2013 at 5:15 AM

 Carol Pack Urban said...

You make everyone proud! Keep fighting!

March 27, 2013 at 8:43 AM

MARCH 20, 2013

1/5 done... :)

Yes, I'm counting down.  You bet your sweet ass I'm counting down.  5 rounds done.  20 more to go for this phase.

I'm learning more and more about the radiation each day.  I ask questions.  I ask *a lot* of questions.  I warned them, but I don't know if they truly understood how many questions I ask.  But, I want to know what's happening, what's going on, why the machine does something today than it did yesterday.

Here's what I've learned so far.  For my particular type of treatment (because, remember, each person has a unique treatment, meant for them and for their particular cancer), my current radiation is an open-field radiation.  They are radiating my entire lower pelvis region.  As far as I can tell, it's from about just below my belly button down to (sorry to be graphic) just above my girly-regions.

Apologies to my boss, any work folks, my parents and brothers....well, everyone, really.

Anyways...the radiation is delivered in four steps, as I think of them.  Top, bottom, left and right.  My radiation starts by me walking into the radiation area.  They confirm who I am visually (they took a photo of me on day 1), via my arm band, and by confirming my birth date.  Every. Single. Time.  There are no assumptions, no "Well, we've seen you many times so we'll just trust you are who you say you are."  It's very procedural, very specific, very safety-driven.

I take off my shoes, jump up on the table, and get settled.  My feet go into the mold that they made during the radiation simulation, and they cover me with a warm blanket.  As they are getting things settled, I pull my pants down to knee-range.  This allows them to see the tattoos that they made, and to line up the guide lights used to make sure I'm where I'm supposed to be.  There is usually some tugging and pulling of the blanket I'm laying on to make sure I'm lined up, and then they head to the "safety zone".

Depending on the day, the machine takes anywhere from, oh, say 10-15 minutes to do what it needs to do.  Some days, they take extra scans of my body....not for diagnostic purposes, but to ensure that I'm still lined up, inside, where I'm supposed to be.  The actual radiation beams take maybe 3 minutes.  Once it's all said and done, they come back in, pull me out of the machine, and I get dressed and head out.

One of the questions I've asked is whether the radiation is effective only when the "beam in use" light is on.  Apparently, the radiation works for weeks after it's applied, which is why they will wait a couple/few weeks before doing another CT scan on me.  So, people....I'm now a full-time cancer killing machine!

Today, as I walked out of the radiation area, there was a bell-ringing celebration taking place.  Someone completed treatment, and rang the end-of-treatment bell.  Oh, how I want SO BADLY to ring that bell.  I worry that I won't ever be able to, since we won't know how things are going until we get the CT scan back, weeks after I'm *done*.  That makes me a little sad, but I'm still hopeful.

This weekend is going to be super busy.  Blogger Summit at CTCA, the Home Run for Life....I'm going to be exhausted.  I'm just hoping I don't wear myself out.  I'm sure I will.  I suppose this is a good test for me, though.  I'm contemplating going back to work, but I have concerns about whether I will be able to handle it.  This will be a good way for me to tell.  I spoke to Kia, my PA, today, and she wasn't happy with me when I brought it up.  I believe her words were, "YOU NEED TO REST!!!"

We'll see what happens when I talk with her tomorrow.  :)

MARCH 19, 2013

3 down...many more to go...

Well, I had radiation #3 yesterday.  In an effort to fend off the nausea that started last week, I started taking Zofran, and that seems to be helping.  So far.  :)

I made it through yesterday with minimal nausea, and what I did have, I was able to keep in check with small snacks.

It's a learning process, and I'm trying to be a good student.

The GI issues have also started, which doesn't make me happy, but it is what it is.  So, I've had to modify my diet, which has required a mind-shift.  During my meeting with my nutritionist last week, I was told, and I quote, "white carbs = good".

Now, I'm not the best person to talk about what you should (or shouldn't) eat, but I can only imagine that, during her schooling, she never anticipated writing or saying those words.  Ever.  But, in the world of cancer, things change and you never know what's going to happen.

For me, I have to strictly limit what I eat.  Right now, there's a focus on feeding my body, providing it with energy, but also making sure that what I eat isn't going to irritate my bowels, add to the potential diarrhea  etc.  So, what does this mean?  Almost NO fruits or vegetables.  I can eat applesauce, bananas, and citrus.  No beans, whole nuts, seeds, whole grains, or legumes.  No dairy milk, but soy/coconut/almond milk is okay.  Cheeses and yogurts are okay, because they have been fermented.

Nut and seed butters are fine.  I asked why I couldn't have whole nuts, but nut butters are fine.  I was told that, when you process/grind the nuts or seeds, it breaks down the husks and limits the fiber.

Eggs and lean meats are going to be my new friends.  I have hard-boiled 18 eggs, but I haven't yet dug in.  I am probably going to make up some egg salad, maybe some deviled eggs, this weekend.  Something tells me I am going to be egg-ed out before this is all said and done.

I have to drink plenty of fluids, which is generally do now, but I'm much more conscious of it.  Once the GI issues really start to kick in, I'll need to make sure I'm taking in plenty of sodium and potassium....I need to learn to like coconut water.  I've heard that you can mix that half-and-half with a nectar fruit juice (like mango or pineapple) and a splash of almond milk....anyone have any other recipes to make the coconut water more palatable?

I will say that this has been a significant change for me.  I've become so used to trying to eat healthier (more fruits and vegetables, whole grains, etc.) that this feels like I'm misbehaving.  :)  You'd think this was fun, but honestly, I *liked* eating healthier.

Oh well - this is what needs to happen, so I'll consider it a temporary modification.

Today is my first weekly appointment with Dr. Chong.  I'm not sure what happens, but I'll let you know.  Meantime, today's schedule is pretty calm.  Laundry this morning, weekly appt and radiation this afternoon.

Wishing you all a beautiful day.

Comments:

Tina said...

Get a prescription for Lomotil, if you haven't already. My bowels got so bad I couldn't eat ANY fruits, veggies, or juice. I lived off of mashed potatoes(from flakes), white rice, toast, and the ever present saltines (in the form of oyster crackers). I drank lots of koolaid and pink lemonade (from a powder mix). Don't worry, you'll get back to the healthy stuff soon enough. :) For now, you just need to be very gentle to your tummy! Just remember that radiation is zapping the cancer cells! Die, cancer, die! Praying for you! <3

March 19, 2013 at 4:21 PM

MARCH 17, 2013

Despite chemo/radiation, amazing things still happening...

In spite of the radiation and chemotherapy, I still have some amazing things happening in my life.

This coming weekend, I will be taking part in a Blogger Summit at CTCA, and on Saturday, I'll be speaking on the patient panel.  I am so honored.  There are amazing people listed as attendees, and I honestly feel like I'm this novice, this newbie who's going to be among pros and highly well-known bloggers.  We'll see if I can hold my own.  I am very excited to take part, especially because members of my medical team, including Dr. K, Dr. Chong, and others will be there as attendees, as well.  Hopefully, they don't think any less of me after this blog summit.  :)

And, on Friday night, I've been asked to do something very special, very cool.  This time of year is Spring Training here in Phoenix, and there are games all over the city.  In Goodyear, the Cleveland Indians and Cincinnati Reds train.  Part of the summit includes attendees heading to a game on Friday night, which is between the Cleveland Indians and the Arizona Diamondbacks.

Before the game starts, I'll be taking part in the "Home Run for Life."  As I understand it, what happens is this...shortly before the game starts, the PA announcer will do a 30-60 second short-version of my story, how I got to CTCA, etc.  At that point, I will run (walk...let's be honest) the bases on the field.

The Arizona D'backs will be lined up along the first base line, greeting me, hugging me, offering high-fives.  The Cleveland Indians will be lined up along the third base line, offering the same support.

Waiting at home plate will be Levi, the kids, my parents....and my care team.  I am going to cry like a baby - even as I sit here, I'm tearing up.

It's such an honor, and so overwhelming to think that I'm somehow worthy of this amazing life, these fabulous experiences, this wonderful joy that I get to feel.

I will make sure that we get plenty of pictures...I just need to remember to rest up, so I can actually make it around the bases.  I'm thinking I may take the kids with me on that walk - they don't know about this yet.  I may make it a surprise.  We went to our first spring training game last weekend, and they LOVED it.  Kevin is a big fan of the D'backs, and I know he is going to freak out when he sees who's playing.

Another amazing experience....yes, this life kind of sucks, but it's also kind of awesome.

All in all...I'll take it.

*****************************

I have to say something here.  I know that there are people who think I take advantage of my cancer, of my "disability".  There are those that think that I use my cancer to get things, to be able to take part in things, to get attention.

If you think that, I say to you this - I would give up absolutely every amazing thing I've experienced, if it meant being fully, completely healthy.  I would never use my cancer to try to "gain" anything.

What I've been given, what I've experienced, what I've been able to do has been solely, completely through the generosity of others.  I have a friend who's also a survivor - we call these "consolation prizes" of cancer.  Without cancer, none of this would be possible.  And, again - I'd give it all up, happily, to be healthy.

But, this is my life.  I have amazing people in my life, and I'm lucky that they think highly enough of me to think me worthy of these fantastic experiences.  I'll accept them, humbly, graciously, and hope that I can somehow use them to help others, to teach others, to raise awareness, and yes - to make my children's and my husband's and my extended family's lives better.

I don't seek out these opportunities.  They come to me.

If you don't like it, or you doubt me....tough shit.

To my supporters...thank you.  For everything.  I wouldn't be here without you.

Comments:

Unknown said...

To all the naysayers out there, may they never have the opportunity to share what you have experienced. I pray they never have to experience having to hear the words "You have cancer." I pray they never have to have a foot of their colon removed, or have to go through the placement of a port, or taste saline as the port is flushed. I pray they never have to hear that there is a met of the cancer they thought was in remission or have to lay there as poison is pumped through their body, feel the weakness that follows, or have to face the newest battle of radiation. I pray to God they never get to experience all the fun we had over the past 5 years. As your mother, I can say you have earned any "consolation prizes" you've received. Because not only have you had to go through everything I've described, but you've taken that experienced and used it to help educate the world about colon cancer. You HAVE made a difference in this world and those prizes are simply the world's way of saying thank you for being you. I love you!

March 17, 2013 at 12:22 PM

 Joan Bardee said...

Take whatever life offers you. You deserve it.

March 17, 2013 at 12:43 PM

 Carol Pack Urban said...

Use the gifts God gave you; your beautiful smile, your ability to speak to people, your willingness to help others. You are such a blessing!

March 17, 2013 at 5:16 PM

MARCH 16, 2013

A short note to cancer....

cancer,

You don't deserve a "dear" or a capital letter.  You are not worthy of my kindness or my generosity.

This week started a new battle in this war to beat you.  Chemotherapy and radiation.  I hate that I have to do this, but not nearly as much as I hate you.

I.  Hate.  You.

The nausea started day one.  I was thinking that it may be from my own thoughts, that I am causing the nausea.  I just don't know now.  Last night, the nausea kicked in pretty good, and I had to take a Zofran.

That's ok.  If I'm feeling it already, the therapies must be working.

I'll learn to deal with them, just as I've had to learn to deal with you.

Just know this.  You will not win.

I am strong.  I am a warrior.

You are going down...

Sent to you with as much hate, loathing and maliciousness as I can muster,
Michelle

Comments:

Joan Bardee said...

best of luck as you beat this scum!

March 17, 2013 at 6:49 AM

MARCH 14, 2013

And, let the radiation begin...

Well, today starts my chemotherapy and radiation regimen to KILL this bastard cancer.

Can you tell that, this time, I'm angry?  Not at life, or at the "why's", but at this cancer.

It needs to die.

In order to do this, I need to take more chemo, and undergo radiation.  When I look into the eyes of my children, when I think about all that my husband and I have to do together, when I think about the many, many things that I have to do in this world....I get angry.

Game on, cancer.  You are going down.

I'm emotional about this next battle.  I didn't ever expect to have to go through radiation.  It was kind of this distant potential, this thing that I *may* have to use later...much later.  I didn't think it would be used so soon in this fight, although I suppose that term is relative.

I cried when I signed in for my radiation simulation on Tuesday.  I couldn't help it - there was this sense of finality, of fear of the unknown, an almost doom-like sensation.  Crossing the threshold into the radiation area  started the tears again, but CTCA is a special place.  The nurses, even Dr. Chong, hugged me, allowed me to experience the emotions, and then walked me through the procedure.

When I think about it, this May marks five years since my original diagnosis.  And, next week marks one year since my rediagnosis.  It's hard to imagine it's been a year, and yet, it somehow seems like this has been going on forever.

But, I'm still here.  I'm still fighting, and more importantly, I'M STILL LIVING!

After all, that's what I'm fighting for.  Yes, I'm fighting for my life, but what good is your life if you're not living.

That's what I hope to teach my children.  Life isn't about the stuff you accumulate.  It's about doing what you love, what you want, and making sure you don't end a single day with regrets, with "what if's".  You have to do what you want, when you want it.

And, I will.  I will continue to live my life, in spite of the cancer.  Or, because of it. Either way, I feel like living my life out loud, in a "balls to the wall" manner, and making sure that I enjoy every minute is my way to flip off cancer, and to prove that, while it's changed my life, it hasn't ended it.

Here's to living today.  No qualifications, no rules, no regrets.  Just....live.  Live the hell out of this life we have.

Comments:

I'm Nic. said...

Your optimism, spirit and attitude needs to be bottled and widely distributed.
The world would be a better place.

Good luck and I think of you often. :)

March 14, 2013 at 7:49 AM

MARCH 13, 2013

More to follow...

I know I've been rather quiet on here lately.  There have been a myriad of reasons, but I'm hoping to update this week, in bits and pieces.

The big news this week is that I start radiation tomorrow.  I had my simulation yesterday, got three new tattoos (I think I may name them....it seems appropriate), and my first of many appointments is tomorrow.  The reason for this is that while my CT scan came back clear, my CEA continues to rise, indicating that there is *something* going on in my body.  In talking with the radiation oncologist, Dr. Chong, it seems that (since my lung tumors haven't grown or changed) there are some rogue bastard cancer cells roaming in my pelvis/abdomen, and they are growing.  We need to get them before they become a tumor.  Hence, the radiation.

I get more information today during my med-onc appt with Dr. K. on what low-dose chemotherapy I am going to start on.  We need to use the low-dose chemo in conjunction with the radiation to make the radiation more effective.  It sounds like I might end up going back on Xeloda, which is fine with me.  I tolerated it pretty well, and I know what to expect.  But, I've learned to expect the unexpected.  As Dr. Chong told me last week, my case is a complicated one.  In my head, that means I can't go into any appointments with expectations.  Damn it.  I'd like to go in, expecting good news, for once.  :)

I'm anxious about this.  I hate it.  It's been a very emotional week for me....my brothers (and sister-in-law and niece) were in town last week from New York and Sweden, and saying good-bye to them is always hard.  It's gotten harder since I was re-diagnosed, because I always wonder if I'll ever see them again.  Those feelings are really difficult to feel, and to deal with.  I hate to even admit that I feel that way, but I'd be lying otherwise, and I just don't have time for those kind of games, even with myself.

I cried yesterday, after I signed in at the radiation desk, and again as I walked through the door into the radiation area.  Between the emotions of saying goodbye to my family, and finally starting to accept what's coming my way, I'll just say that I've been a bit more....sensitive lately.  I have a lot building up inside.

But, that's for another post.

I'll do my best to bring you all up-to-date.  My apologies if there are many small posts over the next few days.

Wishing you all a wonderful day....and, hoping for a good day for me.  Lots of love to you all....

Comments:

KA said...

Hugs and love and many prayers to you, sweet Michelle, as you travel this "new" journey of chemo and radiation. I hope you know the love and support that surrounds you today and everyday. XO :)

March 13, 2013 at 8:55 AM

 Cody Bennett said...

I'm so sorry. This cancer is just an evil bitch. I think of you every single day and you are a blessing in my life.

March 13, 2013 at 1:33 PM

 Thandi said...

Lots of love to you...Praying you will see them over and over and over.

March 14, 2013 at 3:28 AM

 Alli said...

I just found your blog tonight...
I will definitely be back to see how you are doing...
please take good care.
Peace & Blessings Love Alli....xx

March 16, 2013 at 5:06 PM

MARCH 1, 2013

Dress in Blue Day

Today kicks off Colon Cancer Awareness Month, and is Dress in Blue Day!  I'm asking all of my readers, from here in Arizona to all across the nation and the world (that includes South Africa, Australia, Sweden, etc.) to please wear blue to support those still fighting, to honor those we have lost, and to celebrate those in remission!

I'll be attending an event put on by the local chapter of the Colon Cancer Alliance in downtown Phoenix...I am so excited, because I didn't think I would make it!  In addition, I woke up this morning and my facebook feed was exploding with pictures of people wearing blue!  It was amazing....I am so glad that people are willing to help me raise awareness.

A quick update:  I'm doing better.  The anti-inflammatory the doc has me on seems to be the piece we were missing.  I've actually been able to cut back on one of the other pills, which is nice.  I'm hoping to be able to cut others back soon.

I was in with my chiro yesterday, and he's talking about doing an MRI of my lower back, to try to definitively figure out what is (or isn't) going on, so we aren't guessing anymore.  We talked about managing the pain, but also trying to figure out what's causing the pain so we can eliminate it.

I'm ok with this.  Let's figure out what's causing it, so we can fix it, rather than masking it.

Other than that, I've been busy preparing for some family that's coming into town, and attending my many drs appointments.  I have more next week, including lab work to see what that pesky CEA is doing, and my initial consultation with the radiation onc doc at CTCA.  I'm not looking forward to that one, but it has to be done.

I've done a lot of things I wasn't looking forward to - I made it through all of them.  I always keep that in the back of my mind.

So, with that, I'll post more later.  I have a busy day ahead of me - Dress in Blue Day activities, a much-needed massage at CTCA (which are rarely relaxing - in reality, they are quite painful as we try to work through the tight muscles), and then Girl Scout cookie booth set-up (Levi's working it) tonight.

For those of you asking, I am making sure that I don't overdo it.  DIBD won't be as busy as it normally is - I'll be attending as a participant, rather than as a volunteer, so I won't be "working".  And, prior to that, I'm relaxing, making sure to stretch and do what I need to do to fix this issue.  After, same thing.  I am learning where my limits are (for now) and making damn sure to stay within them.

Mostly.  Sort of.  Ok - so I'm still learning.  :)

Later:

Twitter is awesome...

This is why I adore this man, and will support him until the day I die. 

Comments:

Carol Pack Urban said...

Where the LIKE button?

March 1, 2013 at 4:17 PM

 Tina said...

This gave me goosebumps. Awesome!

March 1, 2013 at 8:51 PM