JULY 31, 2012

Disclaimer

I watched a conversation yesterday on a social media site, and I felt compelled to address it here.  It revolved around blogs, and how folks respond to their cancer journey, especially how they write about it.

In this amazing technology-driven world that we live in, information is literally at our fingertips.  In a moment's notice, we can access information (good, bad, and otherwise) from our computers, phones, etc.  When we are faced with a situation we are unfamiliar with, we often refer to the internet for answers.  I did.

As social media sites become more and more prevalent in our lives, people are leaning on friends (real or web-based) for details, support, information, etc.  For me, this has become an essential link to others - my family and friends, other survivors, sources of information about my cancer.  In talking with other survivors, I know it's vital to their fight, as well.

Having said that, there is a disadvantage to social media.  It's called interpretation.  I can type one thing, mean something by it, and have it be taken in a completely different way that I intended.  I saw this play out yesterday, and emotions got in the way of what I know to be the true intention of the conversation.

So, I wanted to say a few things here.  This blog is mine.  All opinions are solely mine, and not meant to offend anyone.  I started this blog over four years ago with the intention of giving my family and friends a simple way to keep up with my cancer journey.  I have friends all over the world, and I didn't want to burden my family with the responsibility of sending out emails to keep everyone in the loop.  This seemed the most feasible way to do that.

As the blog evolved and my desire to become more active in crc advocacy became stronger, I tried to transition this blog to a combination personal/advocacy information site, where someone could read about my personal journey (in a real, no-hoolds-barred kind of way) and where I could also inform folks about new things I come across, etc.  I've decided that if my journey (and documenting it) can help someone else out, then it's worth the time I spend on this blog.

Beyond all of that, it's interesting to go back and read what I've been through, to re-read what my thoughts were at a given time, and to experience my life at a later date.

My opinions, feelings, etc. are not meant to influence anyone, in any way.  I try to keep this real, and if you know me in person, I (hope) think you'll see that this blog reflects the real me.  I'm optimistic but realistic.  I try to temper my glass-half-full attitude with enough realism that I don't overlook the obvious.  I have days where posts are going to be overly optimistic - because that's how I'm feeling that day.  (Case in point - Daughtry!)  I also have other days when I feel like shit, and my posts are going to reflect that.

That's real life, people.  That's normal, whether or not you are battling cancer.  Life can be wonderful, and life can suck.  That's the beauty.

Basically, what I wanted to get across is that my blog is not, in any way, meant to set an expectation of how you are going to or should deal with cancer.  This is *my* experience; my experience with this disease, how it effects my family and friends, and how it effects my life.  In no way do I expect your experience to be like mine.  This disease sucks.  Every single person that is faced with this disease will handle it differently.  Their cancer is unique, their treatment is unique - THEY ARE UNIQUE.  Some will handle it easily - they will be able to work, remain active, continue to live life as if cancer is nothing more than a small big to be squashed.  Others will struggle with their cancer, their treatment, etc.  Their cancer will completely and utterly alter their lives in ways that they can't begin to imagine, and they will never again be the same person.

This is not fair.  It's true.  But, it's not fair.

I just wanted to let you know, if you're reading this blog with the hopes that you'll learn how you are going to handle your cancer, please stop.  You are going to react differently than I do.  It's the way it works.  And, that's ok.

Please don't use my blog as a way to plot out your cancer journey.  Forge your own road.  Yes, I'm optimistic.  I want to live.  As I've always said, I have babies to raise.  But, I'm also realistic.  I have stage four colon cancer.  I will not have the life-span I once expected.  I will likely not live until my 80s or 90s.  It sucks, but it's reality.  Until then, you can bet your ASS that I'll be living every single moment of my life with a zest and by ensuring I'm setting a hell of an example for my kids.  I want them to know that, regardless of the cards you're dealt, you can make a good hand.  You can make a damn good life.

If there's one thing you can take from this blog, please let it be that.  You can make a *damn* good life.  Just make it yours.

Comments:

JasonB said...

Yes, yes, yes! I think some people turn to the internet for medical information (diagnosis, prognosis, first hand experiences) because it is a lot easier than speaking to someone face to face. You have done a remarkable job sharing your journey and yes, it is *your* journey.

July 31, 2012 at 9:47 AM

 I'm Nic. said...

Whoopsie! Above comment is from me...didn't realize the hubby had signed into to Google on the desktop! :)

July 31, 2012 at 9:49 AM

 Jen said...

Beautifully said.

July 31, 2012 at 10:50 AM

 Akemiko said...

Wish more people would write honestly like you, rather than for popularity or raise controversy. Because I know you personally (and wish all people could know you) you're writing from the heart and from the soul. Inspires, captivates and lets us peek into the life of one of the most wonderful women I know. Keep writing!

July 31, 2012 at 11:21 AM

 Lisa said...

I'm also diagnosed with stage 4 colon cancer in March of this year. I'm 39 with 4 kids.
I will be following your journey.
http://lisaanniepants.blogspot.com/

August 10, 2012 at 11:23 AM

JULY 29, 2012

One More Down....

Well, we made it through yet another round of chemo.  I will say this round wasn't as bad (nausea-wise) as I was expecting.  I consider that one in the win column.

Dad and I went to my med-onc appt on Thursday morning, and I was anxious.  I don't know that the anxiety, nervousness, etc. ever goes away.  My CEA is stable (0.9 three weeks ago, 1.0 this week - no real difference, and he feels it will likely stabilize here).  They put me on another anti-nausea medicine (Zyprexa), which is an anti-psychotic medicine (no comment) that happens to have some pretty amazing anti-nausea properties.  So, it's worth a shot.

I asked the doctor some questions I really didn't want to ask, about long-term prognosis and potential for long-term remission, etc.  But, I needed to have those questions answered.  Basically, while I can get back into remission, it looks like this will likely be a maintenance thing - where, I go into remission, cancer tries to come back, we battle again, then remission again.  *sigh*  I expected it, but didn't like the answer.  He wouldn't give me long-term prognosis numbers (which is fine - I refuse to fall prey to numbers....).  I did set the expectation very clearly that I came to CTCA because they are the best, and because I expect them to put me on the far, far end of the bell curve for survivability.  Dr. Granick looked at his nurse (my new care manager) and said, "We have our marching orders!"

Love.

We asked about what the next couple of months are going to bring.  We are looking at three more rounds of chemotherapy with this regiment, then a CT scan to see where we are.  Obviously, the best case scenario would be NED in the lungs, meaning No Evidence of Disease.  This would be amazing news.  If we can get to there, they will likely shift me to Xeloda, which is an oral version of 5-FU.  (I can tell you this didn't make me happy, since that's the one I don't tolerate, but it's apparently absorbed and metabolized differently in the body and thus, the side effects are different.)  There is talk about a PET scan, but that will be a ways down the road, since I have to be off of chemo for 4-6 weeks before we can PET; if we don't wait, there could be false positives, and we definitely don't need that.

I feel like I'm babbling - sorry about this.  I'm still recovering....I'll use that as my excuse this time.

Ok - what else?  I think that's it.  The naturopath came in and put me on a supplement called maitoke, which is a mushroom used to help boost the immune system.   We all figured this was a good thing, especially since I'm considering a part-time return to work (assuming I can make it all work out) and the kids return to school in two weeks.  I'll be bombarded with germs here shortly, so anything we can do to help boost immunity will help.  We also talked with the nutritionist, and all seems to be well there.  They were all happy that I was back at the gym, which I'll take as good.  :)

Oh!  Due to scheduling issues, they accessed my port in the clinic (downstairs, where I see the med-onc team, rather than up in the infusion room, as it normally happens), and we were able to get blood return immediately!  Woot woot!  Such a relief!

Well, beyond that, the rest of the day is a blur.  That's pretty typical of a chemo day - they gave me my pre-meds, the Benadryl made me sleepy, and I slept for the next 48 hours.  I got up long enough to eat.  That's about it.  I'm finally starting to come out of it, and feeling better as time wears on.  The challenge today will be to take it easy and not wear myself out.

So, three more rounds.  Can I make it?  Good Lord, I hope so.  I always feel better the further I get out from chemo.  And, having three weeks between chemo?  Oh, yes. It helps!

Off I go - have a great day, my army!  I intend to!

JULY 25, 2012

Apology, Gratitude, and Pre-Chemo Jitters

First, I wanted to apologize for not posting too often over the last month or so.  I went into a pretty deep depression, and had to fight my way back to being, well, me.  Emotionally, I was exhausted.  I was just completely done with all of this.  I had some pretty negative thoughts going through my head, and my physical condition just exacerbated them.  With the help of some travel (to get away from a world where cancer is center-stage), some talks with amazing friends and family, and some therapy at CTCA, I've been able to work through things and get back to being me.

In my opinion, being diagnosed with cancer is one of the most immediately life-altering things that can happen to you, especially if you are younger.  Don't get me wrong - there are others.  But this is one of the ones I have experience with (damn it).  It takes a long, long time for your brain to accept and process what you're going through.  My emotions run all over the place, and without any rhyme or reason.  The thought of facing your own mortality is terrifying.  There is no guidebook or rules around how to deal with something like this.  Imagining your children growing up without you - it will strike a fear in your heart that words can't possibly describe.  While you know that you are mortal, you assume (and rightfully so) that this will happen at some distant point in the future.  After all, when you're in your 20s and 30s and 40s, you're too busy building your life to start planning for the end of it.  If you're hit with a cancer diagnosis (or something horrific like it), you are often completely unprepared to deal with the emotional baggage that goes with it.

In spite of your desire to shield your family and friends from the "bad stuff," you need to talk with people.  These need to be people you can trust, and be brutally honest with.  You may be surprised who you are comfortable talking with - that's ok.  Something like this can fundamentally change your relationships, and may bring you closer to someone you never expected to lean on.  I've found (both times) that the people you try to protect from your emotions and feelings are often the ones that want to hear what you are feeling, thinking.  They want to help, but don't know how.  Sometimes, just talking with someone helps.  It has for me.  And, for Levi.

We have friends that have been invaluable in this way.  I won't call them by name here (we'll call them Sally and Joe), but they have been instrumental in helping me/us get through this battle.  Joe lost his first wife to cancer years ago, and has been able to talk with Levi about fears, hopes, etc.  It's been an absolutely essential piece to Levi's coping with what we're going through.  Has he accepted it?  Nope.  But, he has someone he can talk with that understands, and can speak from experience.  And Sally?  Well, she's given me the strength and the trust to be able to open up to her about things like my wishes for my body after I'm gone (whether that's in a year or 50 years from now).  She's allowed me to talk through things and has given me perspective on others.

Through it all, we've been able to choose to NOT talk about that huge blue elephant in the room (of course it wouldn't be white...), and to just laugh about the dumbest things, if that's what we need.  They have become an essential part of our recovery and treatment, and I couldn't be more grateful for their presence in our lives.    Their children have given our kids comfort and freedom to be themselves, and I know that I consider their kids my children by another mother.  It's been an amazing experience to be able to go through this with them, and I know that we will never, ever be able to express our heart-felt and soul-deep gratitude.

And, along with Sally and Joe, we have an amazing support system of family and friends, nearby and far away, that have been essential to us making it through the past 4 months.  (Has it only been 4 months???)  I would be remiss if I didn't mention how much everything everyone has done for us has helped, in ways I can't begin to tell you.  It's the overt assistance, like the donations and the dinners.  It's the anonymous help, like care packages that come in the mail unannounced and without a note.  It's the occasional email/fb posting/text message just saying hi....those are priceless, and make me feel like, although the world has gone on without me, they haven't forgotten about me.

Ok - based on the title of this post, I got apology and gratitude out of the way.  Onto pre-chemo jitters.  *sigh*  Do I really have to talk about this one?  :)

The day before chemo always sucks.  There is so much on my mind that I have a pre-chemo checklist that I work through to try to make sure things are settled.  It's basic stuff, like making sure laundry is (mostly) done, that the house is clean-ish, and that there is food in the fridge for the family and for me (meaning, chips and dip and watermelon for me...).  It's the medicines that I need to make sure I start the day prior, like my charcoal tabs to prevent/help with diahrrea, and my Zofran to help with nausea.  Emotionally, I start to get anxious about the port (will it work, will they get blood return, etc.), and the impending physical changes...the nausea, the exhaustion, the icki-ness.

But, it has been three weeks since my last chemo.  I've been on two of my three trips this summer, and the end is (hopefully) in sight.  Dad and I are going to ask about future plans, like when is the CT scan scheduled for, and how many more rounds we have, and what the short-term and long-term future holds.  It's going to be a scary talk, but one I'm excited to have because I think it's going to help answer some of the questions I have in my head.  I'm hopeful that I make it through this round fairly easily (I've got some meds I forgot to take last time that are already on my bathroom counter), and get to next week with optimism and excitement about my trip next week.  Yes, I'm travelling again.  Last time this summer.  Off to Nashville this week!  Can't wait to see Amie, and to explore country music's capital!  Who knows - maybe I'll run into Rodney, and get the chance to thank him personally.  Hey - a girl can dream, right???

Off to get the kids up, dressed, and then I'm heading to the gym.  It's been helping me so much....emotionally, physically.  Helps clear my mind, and helps me feel like I'm giving my body another tool to fight.  So important to keep active....for me, it's just walking on the treadmill.  For now, it will do.  I can run later!

Comments:

Ana said...

I have so much respect and admiration for you! Seeing all you are going through and still being able to talk about it the way you do it. Thank you for letting us being part of it.
I would love to meet you in person and become your friend.

July 25, 2012 at 7:27 PM

JULY 24, 2012

Inspired!

I spent the past few days in Baltimore for the Colon Cancer Alliance's National Conference, and I admit, it was perfect timing for me.  I've been feeling lost and depressed and lonely and unguided, and this conference inspired me in ways I can't even begin to tell you.

Last year, I was asked to provide my input on a potential agenda around discussing the 50-and-under crowd, especially as it related to us being diagnosed more, and how it affects us.  Talk about preaching to the choir!  I took part in a stakeholder study, and was excited to potentially be a part of something like this.  Honestly, once it was done and I got the results of the overall study, I put it aside and didn't think much about it.

Earlier this year, I remember getting the information about the conference, and being excited that the conference would focus on 50-and-under.  Then, my cancer came back and this became that much more important.

With the financial assistance from CCA and our local chapter (and as a result of the fundraising and scholarships these groups do), our chapter was able to have 7 members go to this conference.  Many survivors and caregivers, most (all?) who were affected by colon cancer under the age of 50.  We had long-term survivors there (9 years and counting), and people (Terri and me) in treatment.  It was quite a diverse group.

I flew out to Baltimore on Thursday morning, and was just amazed from the get-go.  We got to the hotel in Baltimore's Inner Harbor, and kept running into people with the conference.  In spite of the torrential downpour, a few of the chapter members and I went out to dinner (very pricey, not very good....bummer) then walked over to a place that is apparently world-renowned for their Italian pastries.  Um, after the 30-minute wait, we saw why.  Delish!  Absolutely amazing, and it was tucked away in this little area of Baltimore City called Little Italy.  Good lord, seeing areas like that make me miss the East Coast....

Anyways, back to the hotel we trekked to work off the sugar we were going to eat, and Terri (my stage-4 roomie) and I headed back up to the hotel room to try to rest up for the next day.

Friday morning, we hit breakfast, then went to the registration area for the conference.  We got our name badges and some swag, then had a chance to talk with some of the CCA folks I've only ever met through email (so nice to be able to put faces with names).  I started to get emotional about being there (grateful that I got this amazing opportunity, sad that I have to be there in the first place, and so damn proud....), and then I turned around.  CTCA was there, and had a table.  Oh yes, the tears started.  It seemed to appropriate, for me, that they were there.  I calmed myself down, introduced myself to the CTCA rep, and made sure I told her how amazing I thought CTCA was.  :)

After that, Terri and I headed to the mall in the hotel (yes, a mall in the hotel) for some retail therapy (for her).  The CCA conference didn't start until noon-ish, so we had some time.

Friday's conference focus was on the 50-an-under crowd.  There were three survivors that stood up on stage to tell their stories (again, I cried....I think everyone did), and at one point, someone asked all of the stage 4 survivors to stand up.  Yes, tears again.  I couldn't help it.  It was amazing to know I wasn't alone (of the people there, about a quarter stood up as stage 4, and about 80-90% of those were under 50....).  And, again, it was hard to stand up and publicly declare (and admit) that I was stage 4.  I'm not in any way ashamed - just hate that I'm now stage 4.

Anyways, Friday's panel discussion was titled "Diagnosed Under 50: Why and What Can Be Done".  Dr, You (from UT MD Anderson) went through a *lot* of data-driven slides, showing that all of her data indicates a statistical increase in diagnoses under the age of 50 for crc (colorectal cancer).  The thing that came out of her study is that the data isn't up-to-date (as with most stats, the data is at least 5-10 years old), and that much more research needs to be done to more accurately reflect what's happening, especially because the medical community tends to react more to numbers than anecdotal data.  Dr. Brooks (from the American Cancer Society) spoke about lowering the screening age for crc, and in no uncertain terms, indicated that the ACS will not be lowering the screening age for crc.  (Obviously, this did not go over well with the conference attendees.)  The one thing that he did indicate (that I think it ridiculously important and so  misunderstood) is that screening is solely for asymptomatic patients.  This means that the screening age is for people who do not have any indications , risk factors, etc., for a particular disease.  So, if you are 40 years old, have no family history, and have no presentation of symptoms (bleeding, change in bowel habits, etc.) that would provide valid reason for testing, you shouldn't be screened.  However, he did indicate that, if you present with risk factors and/or symptoms, you should be diagnostically tested, regardless of age.

The take-away?  Doctors should not be using the "screening age guidelines" as a reason to not test someone presenting with symptoms.  I think this is so misunderstood, by society at large and specifically by the medical community.  So many of us at the conference took this to heart, and will be making sure that every single person (layperson, medical person, etc.) understands this better.  In addition to that, you can bet your ass that we made sure to let Dr. Brooks (the ACS rep) know that this is a significant failure on the part of ACS to not clarify this point.

OK - taking a deep breath.  This point took did not go over well with the conference attendees, and Dr. Brooks was questioned by many of us (including me) on his lack of accurate, up-to-date data.

The thing that bothered me was that Dr. Brooks used out-of-date data to (try to) prove his point - that there isn't a reason to start screening earlier.  *sigh*  I called him out on this, and asked him this:  if Dr. Brooks and Dr. You can't get their statistics to reflect the same information (i.e., Dr. You said there is an increase, it's a 50/50 gender split, and there's an increase in risk based on race; Dr. Brooks said that being a woman, non-white, or young definitively did not raise your risk, nor was there evidence in an increase in the under-50 diagnoses), how the heck can the medical community do the right thing?  He didn't have an answer for this, and appeared to be slightly miffed at me.  Dr. You, however, caught me later and thanked me for speaking up.  Interesting.

After that discussion concluded and a short break, there was another panel called "Challenges and Issues Associated with Diagnosis Under 50."  There was some really good discussion around being diagnosed under 50 (and the differences between the age groups as it relates to treatment, side effects, long-term management, etc.), offering support to survivors, genetic links, and advocating for insurance reimbursement.  There was some really good information provided, and I think it helped give many of us hope about what we are going through.

The day wrapped up, and that evening, there was a "Blue Party,", which was a networking reception - in blue!  An amazing opportunity to meet up with more people (apparently, me speaking up during the panel sessions put me on the map, and I had a ton of people pull me aside and thank me for speaking up).  It was an awesome opportunity, and so much fun!  I didn't get in until really late that night....but, it was so worth it!

Saturday's session was more generalized, but still had a secondary focus on the under-50 crowd.  It started out with breakfast (yummy) and then an absolutely hysterical presentation from Brenda Alsagher, who herself is a crc survivor and is a comedienne.  She gave us permission to laugh, and gave us reason to laugh.  Super important thing to remember, and I think we tend to forget it.  It was nice to laugh for 45 minutes straight!

The next panel discussion was titled "What Everyone Needs to Know About CRC" and included a very informative presentation from Dr. Ocean.  She told us about some of the treatment advances that are coming down the line, and discussed the pros and cons of treatment protocols.  There as also a presentation from Ms. Dunton about the new healthcare law, and I can tell you that, regardless of your political affiliation, you would be in support of at least portions of the law if you saw her presentation and the reaction to it.  It was really good to hear, and to be able to better understand what's coming.

The next panel discussion was titled "What Everyone Needs to Know: Your Guide to an Integrated Wellness Plan" and focused on the importance of nutrition, exercise, mind/body wellness, and a discussion on supplements.  Very interesting and informative.

CTCA hosted the "CCA's Sapphire Awards" luncheon on Saturday.  This was particularly emotional....there were some amazing people up on stage, including Teri Grieg, who is the only person to complete an Ironman while undergoing bi-monthly chemotherapy (are you KIDDING me???).  And, our local Central AZ Chapter won  the "Best Undy 5000 Management" Sapphire Award.  We knew ahead of time that we'd been given this distinct and amazing honor, and I think we all thought we were prepared.  Then, they showed the video that was made at the 2010 Undy (which I chaired), and showed our Rebekah, our spokesperson who lost her battle back in February of this year.  It was so emotional - we all cried.  For me, seeing the event I worked so damn hard on and was so ridiculously proud of (remember, I trained to run in that event as well as chaired it), and seeing Rebekah alive, vibrant, beautiful - well, it was everything I could do to keep my composure enough to make it up on stage.  I couldn't be more proud to be part of such an amazing group of people, and to stand on stage as a survivor.  It was just spectacular.

Saturday's panel discussions included an "Ask the Expert" session as well as several breakout sessions.  The conference concluded, and it was bittersweet - good to know that I was heading home, but sad to see it end.  I enjoyed this event so much, and came away with a much better understanding of who I am as a survivor, how I fit within the realm of this world, and how I can help others (in some small way) as we continue to move forward.

This was just an amazing opportunity - I met long-term stage 4 survivors, which is exactly what I needed.  I learned about some of the new treatment options on the horizon, and heard many medical professionals talk about the changes that they see coming in the next 5-10 years.  It gave me hope for the future of my fellow survivors, and for me.  If there are 10+ year survivors with the technology and medicines we have now, what's going to happen when we get ever more ammunition in our arsenal?  The one thing that worries me (and was recognized as a very important issue) is that, as we live longer, we are going to experience more long-term side effects and issues.  Recognizing these, and learning to treat them, is a great challenge, for the survivors and for the medical community.

I will do my best to post more pictures soon - I'm trying to get this entry posted ASAP (have had many people ask about it already), and I have plans for the day - well, sort of.  Lunch for the kids, then off to the gym.  So, yeah.  Plans!  :)

I can say that meeting my fellow survivors, spending time with my local chapter, and getting more information about this disease has completely reinvigorated me and renewed my energy and my passion.  For this cause, for my fellow survivors, and most importantly, for my life.

If you are interested in listening in on a recap of the conference, CCA is hosting a chat tonight at 8pm EST.  You can log in here.  There will also be a white paper written and distributed - if you are interested in that, please let me know and I'll make sure to post the information once it's released.

We are on the brink of amazing things in the crc world.  I really feel like there is a paradigm shift occurring, and it feels so good to be a part of it.  To know that what I'm going through isn't for naught.  To know that the efforts I put into this cause will (and they will...) someday, help someone through their own journey. 

Comments:

Carol Pack Urban said...

This is exactly why I continue to donate $$ to CCA and not ACS! I think ACS is too overwhelmed by so many cancers that they can't focus. I'd rather put my $$ into research to help colon cancer survivors.

July 24, 2012 at 1:36 PM

 I'm Nic. said...

Bear with me as I'm having a "brain fart" moment. So if there is a family Hx, screening IS recommended. I ask because my family doc brushed me off when I said I wanted a colonoscopy telling me I was too young and had no symptoms. But my grandma was Dx at 75, my Mom's cancer started at 55 - 20 years earlier. I'm 35 which is exactly 20 years before my Mom's cancer manifested itself. See where I'm going with this. I have an appt for a physical in September and would love to arm myself with some recent literature to sway her to allow me the scope.
All that aside...holy smokes...it sounds like that conference was filled with good info *and* good times! So happy you had the opportunity to attend!

July 24, 2012 at 3:46 PM

 Alma H. said...

Thanks for such a detailed recap, Michelle! I'm so glad you were so inspired and yes, you made us very very proud! Wish I could be there, hopefully next year :)
My question is regarding the treatment options - you wrote that the doctors said there are drugs in the works, but did they name any specific drugs yet? Did they bring up that long r*** something drug?
Oh, and regarding the long term side effects - what were some of the issues that you remember them naming specifically?

July 24, 2012 at 8:20 PM

 Lisa said...

I would love all the information you received in paper form, or some sort of internet form (email).
I'm 39 with stage 4 colon cancer.
Any info I get really helps.

August 10, 2012 at 4:41 PM

JULY 23, 2012

Quick update

I was going to post a long, detailed description of my trip from the past weekend, but I don't have time.  I almost forgot I have an appointment this morning at CTCA.  :)  So, a quick update.

This weekend was amazing - I attended the Colon Cancer Alliance's National Conference, and it was an inspiring, informative, and amazing experience.  I met so many people (survivors, caregivers, etc.), and it gave me hope when I needed it most.  At one point, the moderator asked for all stage 4's to stand up, and it was overwhelming to see how many of us there really are out there.  And, so many of them were under 50 - I hope someone got a picture.  It was a moment.  I cried.....I didn't know what else to do.  Happy tears, at not being alone.  Sad tears, that I had to stand up at all.

This weekend was inspiring, and informative, and overwhelming, and amazing.  There just aren't enough words to tell you (quickly) about this weekend.

I'll update more on that in a bit, but I'm definitely more motivated than I've been in a while to take what I know and what I've been through and use it for good.  I'm hoping I can help someone through their own battle.

Other than that, I'm feeling pretty good.  Anxious about this week, since I have chemo on Thursday.  I'm hopeful that I can tolerate it fairly well, since it's been three full weeks since my last round.  And, I'm hopeful that I've only got two more rounds.  It will likely be more, but I'm hoping.  We'll see.....

I'm going to talk with my team about going back to work in the next couple of weeks, on a part-time basis.  I need to get back to it, for a few reasons.    

All right, off I go.  I'm well, and more optimistic than I've been in a while.  I suppose meeting other people in a similar situation (and being surrounded by such optimism and positivity) will have that effect.  It's a good feeling, and one I hope I can maintain for a while.

JULY 10, 2012

Erbitux

Disclaimer - this post might get graphic and gross.  If you've just eaten or have a weak disposition - you may want to skip this post.  :)

In my search online for some information about Erbitux,I'm not finding anything that's really recent.  I thought I would put my experiences with Erbitux out on the web, in the hopes that maybe, maybe, I can help another person who's searching for something.

When I found out that I would be moving from the Folfiri/Avastin regiment to Irinotecan/Erbitux, I was pretty stoked.  No more pump, and the side effects from these two are supposed to be much less severe than the last regiment.  So, I went into the first round wary of the one thing I have always heard about Erbitux - the rash.

If you do a google search of "Erbitux rash," the majority of the responses are from a few years ago.  This was frustrating, because I was hoping to connect with folks currently going through treatment to see what's worked for them.  While the information I found was somewhat helpful, it wasn't up-to-date.  I know that, for me, a lot of things have changed since my first diagnosis, especially with how they help a patient deal with the side effects.  So, not seeing much post-2009 was disheartening.

During my first infusion with Erbitux, I asked a ton of questions.  Unfortunately, a lot of those questions didn't have any answers.  How long will it take until I start to see the rash?  Where will it show up first?  How will we treat it?  (This was easily answered - I asked for the most aggressive treatment, and I got it - an antibiotic and a topical medicine.)

I didn't expect to see the rash show up until well after I was back from NY.  I had my first infusion with Erbitux on Tuesday, and started to see the rash appear by the weekend.  By the following week, I had already gone to MAC Cosmetics for help, and by the following weekend (within 10 days of the infusion), I was in tears.

The physical change was so much more difficult than I expected.  Aside from the fact that it happened much quicker than I expected, it was much more violent than I expected.  In literally a few days, I went from a face that was almost completely clear to a face that was covered (especially on the nose/cheek area) with swollen, painful., infected, visible, 3-D pustules.  Think the worst case of pimples and/or acne you had as a kid, and multiply it by ten.  I'm serious.  Aside from the visible effects, my face hurt.  It hurt something awful. At the worst point, it literally hurt to talk.

And, the rash wasn't just on my face.  Since the start, it has spread to my scalp (yes, all over my bald-ish head).  Behind my ears.  In my ears.  On my neck.  On my chest, back, arms.  It's started to migrate further south (think, anywhere with skin and hair....yes....big fun).  *sigh*

After more tears and a discussion with the doctor at CTCA, I started taking Aleve twice daily.  This was to help with the inflammation and the pain.  Between that and changing from the alcohol-based Clyndomycin to a steroid-based cream, I started to *feel* some relief.  I wasn't seeing it - at all.  Matter of fact, the visible rash was much worse.  Make-up helped a little, but I still felt, well, ugly.

It dawned on me that it might help you to understand *why* this was happening.  I know it helped me.  My med-onc team explained it to me, but it wasn't until I heard the weekend doctor at CTCA explain it that it sunk in.  Here is a good (very in-depth, wordy) article on the whys.  In laymen's terms (or how I understand it....), Erbitux works by blocking an epidermal growth factor receptor (EGFR), which tells the cancer cells to stop multiplying/growing.  It will also effect any other cells that also contain the EGFR (skin, hair follicles, etc.).  From the article:
Epidermal growth factor receptor is normally expressed in the epidermis, sebaceous glands, and hair follicular epithelium, where it plays a number of important roles in the maintenance of normal skin health, including control of differentiation, protection against damage induced by ultraviolet radiation, inhibition of inflammation, and acceleration of wound healing.


Basically, Erbitux causes the skin to erupt in an acne-like rash, be much more sensitive to sunlight (hello, Phoenix in summer...), and to heal much more slowly.

Freaking.  Awesome.

As I said, knowing the WHY seems to have helped me accept what I'm going through.  Well, that and the reassurance that the amount of rash does, in fact, show that the chemo is working.  I'm not saying it makes it any easier.  It doesn't.  But, it helps me accept it more easily.  Usually.

The one thing that none of the on-line discussions talk about (nor, in all honesty, did any of my in-person discussions with my med-onc team cover) is the emotional toll something like this can take on a person.  I can only speak from my personal experience.  I'm not sure if everyone is going to react the way I did, or continue to.

I had been able to handle the emotions of this rediagnosis fairly well, I think.  I've had rough times, and I've been able to get through them.  I think that, given what we've faced, I've gotten through it as well as can be expected..  I dealt with shaving my head in the only way I knew how - I went out, got new (sassy) make-up and big earrings.  I made it work for me.

Up until now, I've (for all intents and purposes) been able to avoid *looking* like a cancer patient.  If you ask someone, a stereotypical "cancer patient" is bald, gaunt (or swollen), and they look ill.  They might be pale, undone, unkempt, etc.  I was able to avoid this, by maintaining who I am - makeup, earrings, clothing, etc.  I was able to still look like me, just with much less hair.  :)

This was, by far, absolutely the most difficult thing (emotionally) I have gone through.  The loss of looking like ME was awful.  To have the world see something that didn't reflect who I am was awful.  I think I have a better understanding of how a breast cancer patient feels when they lose their breast(s) after a mastectomy.  While I can't imagine what that kind of surgery must be like, I have a better understanding of how the loss of one of the things that makes you a woman can affect every single part of who you are.

I've cried.  A lot since this Erbitux rash showed up.  I've cried more in the past four weeks than I have since my re-diagnosis.  I'm lucky - my care team at CTCA and my husband have seen me through most of the crying sessions.  It's helped, more than I can tell you.

Levi has been absolutely amazing.  When I shaved my head, I was worried about how that would affect his view of me. Didn't make a damn but of difference to him.  When this rash started to show up, I really started to get scared.  Why would a man be attracted to a woman who has no hair, is covered (head to torso) in acne, and is feeling so shitty about herself.

Why?  Because he's an amazing man who loves his wife for the person she is, rather than how she looks.

I.  Am.  So.  Lucky.

He has allowed me to feel absolutely comfortable at home.  I walk around the house with no make-up.  He has given me the strength and the confidence to be myself.  I have gone to the gym several times without makeup.  Would I be comfortable doing this without his help?  Abso-freaking-lutely not.

So, am I completely comfortable with what I'm going through?  Not at all.  Am I getting better?  Yes.  Emotionally, I'm still fragile.  I'm working with my therapist at CTCA to help work through the issues that are caused by this rash, as well as other issues that have come up.  (That's another post...)  I'm still learning how to make my outside appearance match the person that I know I am on the inside.  I want to have my (blue) hair back.  I want to have my clear complexion back.  I want to have my sense of confidence back.

I'm working on those.  But, in order to get there, I need to get through the next couple of rounds of Erbitux.  I need to continue fighting, so that I can get to those goals, and others.  I have so much I want to do.  I just need to get there.

How am I getting through the now?  Doxycycline (an oral antibiotic that needs to be taken with food, or it causes nausea).  A fairly heavy steroid cream (the steroid is, apparently, fairly low-dosage).  Clyndomycin lotion (not the alcohol-based stuff I was on originally, that stung like a bitch...).  Aleve twice daily.  A new skin regiment (let me know if you want specifics....my skin went from oily to dry in about three days....it sucked).

I can only hope, that by opening up this way, I can help someone else who's looking for some information.  If I can do that, then (as has always been the case), it makes my journey seem that much easier and much more worth-while.

Comment s:

Tina said...

This is a great post Michelle. It brought tears to my eyes, both for you and what you have to go through, and for the memory of what I felt when I lost my hair, eyelashes, eyebrows, and a breast. With the colon cancer I looked great--I lost weight, my face was thinner, my eyelashes grew longer. With the breast cancer I looked like a cancer patient, and I hated it. I hated what it took from me.

I'm glad you are doing what you can to stay strong and continue to fight, even when it's so difficult. I love your ability to tackle your problems head on and deal with them. I have no doubt that you will kick this cancer's butt once again!
By the end of your post I was smiling, because it reminded me so much of the older posts of yours I used to read that helped me through those dark times of chemo. You are still inspiring me, and now helping another group of people get through their dark days. Bless you!

July 11, 2012 at 7:42 AM

 Carol Pack Urban said...

Ditto to Tina's comments! I check your blog and FB page a couple times a day just to see Whutz Up! You are indeed an inspiration to so many people. Me included.

July 11, 2012 at 8:07 AM

 I'm Nic. said...

Thank you so much for sharing your insight, information and experience. This. will. help. someone else. (thank you Google). I will make a mental note of this should the docs put my Mom on it.

July 13, 2012 at 9:52 AM

 Ana said...

Michelle, you are an extraordinary and a very strong woman. You have my support and you are in my prayers.
You are not alone and even people who you don't know, like me, loves you.
Cheer up, girl!!!

July 25, 2012 at 7:10 PM

JULY 6, 2012

Post-chemo update

Sorry I couldn't finish the post yesterday - when that Benadryl hits, there isn't much that can hold off the sleep.

Anyways, there were a few things I wanted to add from yesterday's appt.  As I said, the dr seems very pleased with the results from the first round of Erbitux.  Apparently, this is a very targeted kind of chemo, and it seems to be working as well as (or better than) expected.  This is very. good. news.

We talked a bit about the new side effects from the Erbitux.  I keep forgetting that I'm continuing the Irinotecan, and as that builds in my body, the side effects are going to continue to get worse.  I talked with the dr about the fatigue, which is getting worse.  He has given me, of all things, Ritalin to battle the fatigue.  I'm not happy about taking yet another rx, but it has to happen.  I need to be able to get back to living in-between chemo treatments, and the fatigue is wearing me down more and more.  I'm hoping this will help.

In addition to that, we are adding another lotion to the bag to try to help with the itching and redness from the Erbitux rash.  Here's hoping that it helps, especially with the stuff on my scalp.  I think (right now) that is the worst....the visual rash is pretty bad (and bound to get worse), but the itching on my scalp....argh.  That's awful.  But, it's also a direct reflection that the chemo is working, so I can't complain too much.  I guess.  Well, I'll complain here.  :)

We talked about trying to wean me off of a few of the meds that have been helping me with the neuropathy.  That seems to have backed off, so we are going to see if that causes it to start to come back.  In talking with the naturopath that was covering for Dr. Adam, she seemed to feel that I was on a *lot* of meds, and it couldn't hurt to go off a few, to see what happens.  We can always add these supplements back in, if needed, so there's not really too much concern.

Other than that, things are pretty status quo, which I suppose is a good thing.

Chemo yesterday was rough.  They had trouble getting blood return from my port, which always makes me nervous.  Normally, when they access my port, they don't have any issues getting blood return.  Past two times, I've had issues.  If it happens again, I think I'm going to ask for a port study.  I just want to know what's going on.  Apparently, in talking with other survivors, this isn't an uncommon thing.  That doesn't make me feel any better, but it helps a little.  We know that the chemo and fluids are going where they need to, b/c I can still taste and smell the saline flush (blech).

In addition to that, I was just exhausted leaving chemo.  Nausea didn't help.  I've been fighting low-level nausea all day.  Once again, snacking seems to help.  Well, it helps the nausea, not my weight, which has gone up, again.  *sigh*  But, in talking with everyone, this isn't an issue to deal with now.  Making sure I maintain caloric intake is the key.  Once I'm back in remission, I'll work on losing the weight.  Again.

Stupid cancer.

All right....I'm going to try to take a shower and get *another* nap.  And, maybe eat lunch.  Yeah.  Maybe I should try that first.  LOL!

Comments:

Tina said...

I've had trouble with my port too, off and on over the years. It's been good recently, but when I did have trouble it was mostly positional (meaning I had to lay back, turn my head, hold my breath, whatever!). Sometimes they needed to put in the "roto-rooter" stuff to clear the clog. I'm assuming they've tried all this with you too. It is common, but for sure ask for the study, if you think you need it.
I don't remember if it was you or someone else who was recently talking about the awful taste from the saline flush. I may have told you that I plug my nose during the flush and that helps a lot. This last time I tried a mint and didn't plug my nose (which was very hard to do--I had to keep putting my hand down because it's such a habit after 3.5 years!). The mint worked well--there was a moment of "yuck" but it cleared up fast and there was no yucky taste that lingered. So I think I will do that from now on. I absolutely hate that taste!
I'm so happy for you that this new chemo is working! The SEs suck, but sounds like they are manageable. Hope all continues going well, and you can get a break from it all SOON!

July 6, 2012 at 5:02 PM

JULY 5, 2012

Good news, and updates

Ok - I had plans to update the blog while I was in NY.  I had my laptop ready and waiting.  I deserted it, except at night, when I used Netflix to help me fall asleep.  I was too busy spending time with my family and friends.  It was awesome.

I'm home now.  Sitting in chemo right now, getting pumped full of drugs meant to stave off nausea.  I met with the med-onc team, and got some amazing news.  My CEA levels (again, those are the protein markers in my blood that *for me* are a good indicator of whether the cancer is at bay or trying to come back) are down to 0.9.  That's the lowest it has been.  Ever.  As in, it has never, ever, in all the times I've been tested (since May of 2008) been that low.  Awesome.  Dr. Granick was so happy - he walked into the office with a HUGE smile on his face and brandished the chart they provide with glee.  It was adorable, and so needed.

I've been struggling the past couple of weeks, and this news helped.  I'm just tired.  Tired physically (apparently, the chemo is causing fatigue...), tired emotionally.  When I talked with my team today, we are going to take some steps to try to combat the fatigue.  And, I'm seeing the mind/body therapist next week to help with the other.

I'm just tired of this fight.  I want to get back to normal, for whatever that will mean.  So, I need to continue fighting to get there.  I know it.  I'm just tired.

Anyways, NY was amazing.  The two "Rallies for Remission" we had were fabulous - I saw a ton of people that I haven't seen in way too long, and got so much support.  So many hugs, so much love.  It was awesome.  

Back to chemo talk....again, we got some good news today.  According to Dr. Granick, we know the chemo is working based on the CEA level and the fact that I have the rash so badly.  So, I suppose there's something to be said about that.  :)

I am going to go on Ritalin to help combat the fatigue.  Well, that, and working out.  Here's hoping the combination helps me wake up during the day.  Yikes - right now, I'm just exhausted all the time.  Apparently, this is a common thing.  They have had good luck with this, so we'll see what happens.  They also gave me a script for another lotion to put on my skin and head.  Not much else can be done about that.

Crap - was hoping this would be a longer post, but I'm starting to get sleepy.  Benadryl via your IV makes that happen.  So, I'm off to nap-land, and will try to update more tomorrow.

Keep on sending those good vibes, etc.  I need them....

Comments:

natteringnic said...

What?? How dare you abandon your blog in the name of fun and family??? *wink* Yay on the good news! I'm reveling right along side you! And I'm sure you've heard this a zillion times but you look just like your Mom! :)

July 5, 2012 at 2:54 PM

 Carol Pack Urban said...

FANTASTIC NEWS!

July 5, 2012 at 4:31 PM