FEBRUARY 27, 2014

Brain Dumping

So, I was thinking last night that I need to update the blog, then I realized that nothing very interesting has happened to warrant an update.  And for that, I am extremely grateful.  (I am also knocking on wood, praying, and hoping I didn't just make a mistake in saying that....sometimes, I can be very superstitious.)  

Here's what's been happening around here.  We've been fighting all sorts of nasties around here.  I had a wicked head/chest cold that took me down for several days, and it also knocked Levi down for a few.  We no sooner pulled around from that, had a few days of feeling good, and at the end of this weekend, he got food poisoning and I got a stomach virus.  

Really, in the overall scheme of things, this is nothing, but I would very much like to go back to being healthy again.  :)  

Finally, I think we are all recovered and on the mend.  This last stomach bug threw me for a pretty good loop.  I lost 6 pounds in about 3 days.  In the past, that would be reason for celebration, but now?  I really would like to stabilize my weight.  (Never thought I would be worried about losing weight....)

Anyways, this bug this week made me delay my chemo.  Normally, chemo would have been last Friday, but Levi and I had tickets to go see my Rodney in concert (!!!) and the doctor agreed that delaying the chemo wouldn't hurt anything.  Then, when I came down with this virus, I knew I couldn't a) go in and expose all my cancer peeps to whatever I was dealing with, and b) I didn't have the energy to get there and then to go through with the treatment.  So, I delayed it.  Today, I go in for another round of lab work (which has to be drawn within a very short period of time prior to chemo to make sure levels are acceptable), tomorrow to meet with the doctors, and Saturday for chemo.  No big deal....

What else is going on here?  Well, the Rodney concert was amazing.  Levi went with me, which was just such a treat.  We've been through so much, and at this time last year, I was ready to give up on our marriage.  To be at a point, just 12 months later, where we went to an event like this together, enjoyed our time as a couple, and spent the entire weekend together was just such a blessing.  

Cancer can be so difficult on relationships.  Friendships are tested.   I've found that there are people who you thought would stick by you, but they don't.  Then, there are people you wouldn't have dreamed would be there for you, and they are your biggest champions.  Other relationships are strained.  I know that our marriage almost ended because of the issues associated with cancer.  

One of the things I feel like I've learned over the past 5+ years is that you have to deal with the issues that you face, even if they are tough to talk about.  I had a discussion with my daughter last night; she is having some boundary issues with a friend, and while she doesn't want to hurt this friend's feelings, she needs to back away from this person for a little while.  She was looking to me for advice and guidance, and I think she wanted me to have some magical solution that would fix the problem without having to face it.  I told her that, point blank, you need to take care of yourself and make your own life a priority.  While it's important to worry about others, to nurture those relationships that you cherish, it is all the more important to care for your own well-being, physically and emotionally.  Long story short, I offered to talk to the parent of the other child, but Julia's concern was that the concerns would get back to her friend and hurt her feelings.  I had to be very honest with her - her friend is going to get hurt when Julia backs away, but sometimes, that needs to happen to make sure that your own heart is healthy and happy.

I think this is a good lesson for all of us, as I think about it more.  I know that, as a mom (and woman), I tend to put other people's well-being ahead of my own, and make personal sacrifices to benefit others.  While that is noble and wise and something to be proud of, I've also learned that it's even more important to care for myself.  Being selfish is something we, as women and parents, aren't generally allowed to do.  It's often frowned upon.  

As a cancer patient, I've learned that being selfish is what's gotten me to where I am.  Here's why.  I have had to back away from friendships that didn't provide me with what I needed from that relationship.  I've also learned to cultivate other relationships that have provided me with what, in some cases, I didn't know I needed.  I can only give so much - my energy is finite, and my time is precious.  If a person isn't willing to put the same amount of energy into our relationship that I am putting in, I back away.  I can't afford to be in a friendship that is emotionally draining.  

I feel like I am rambling, but I don't know how to put it any better.  I guess what I am trying to say is that, as I spoke with Julia last night, I realized that she was so concerned with making sure she wasn't hurting her friend that she was willing to sacrifice her own happiness.  Again, I think that's noble, but I wanted to reinforce to her that her own happiness is just as important as her friend's, and that sometimes, it's okay to think of yourself and make a decision that may make someone else unhappy, if it helps heal your heart.  

Selfishness has gotten me to where I am today.  That sounds awful, but I can't think of another way to say it.  Selfishness makes me fight for my life.  I realized a while back that, if and when something happens to me and I am no longer here on this earth, my family will be okay.  They will mourn.  They will hurt.  They will miss me, and they will be changed in ways I can't begin to imagine.  But....they will be okay.  Whatever that means, I know that my family will eventually be able to move on and live their lives without me.  I know that I have loved my husband and let him know this.  I know that I have taught my children everything I can up until now.  My family knows how much they mean to me.  They are my heart, my soul, my world.  

But, when it comes down to it, I don't want to leave them.  Selfishly, I am not ready to let them go.  

I want to be here to continue loving my husband.  We have too many dreams we want to see come true.  We have too much we want to do.  I want to grow old with him, see our babies grow up, see our grandchildren born and grow.  I want to love my husband more.

I want to be here to teach my children.  I want to be here to see Julia grow up, get her first boyfriend, help her through that inevitable heartache.  I want to be here to help her pick our her prom dresses, her wedding dresses, her child's clothes.  I want to be the one to help her as she struggles, as she celebrates, as the triumphs.  I want to be here to see Kevin grow into a young man, then onwards.  I want to be here to help remind him that it's okay to cry when you're sad, and that laughing is what will eventually win over that young lady's heart.  I want to be there to dance the mother/son dance with him at his wedding, and watch his wonder as his wife gives birth to their children.    

So, selfishly, I take care of myself and my heart, so that I have the physical and emotional strength to fight this battle.  

I only hope that, in teaching this to Julia, I've done and said the right things to make her realize that her happiness is just as important as the happiness of others. 

Comments:

Natalie said...

I love this post!!!!

February 27, 2014 at 10:21 AM

 drj said...

I would love to chat with you! Sounds like we are in similar places. I was diagnosed with stage four colon cancer (mets to liver) last April, at the age of 38. I have a 5 year old boy and 7 year old girl. Was in remission after liver resection in August but they found recurrence in Feb (last month). I've also struggled with low platelets, WBC, and anemia since last August. Ack!
Thank you for sharing your experiences. I'm so heartened to find another survivor in the same stage of life!

Jessica

March 15, 2014 at 5:37 PM

 Michelle said...

Jessica, I am not sure how to do this without giving everyone in the free world my email address. Any idea how we can connect?

March 25, 2014 at 8:46 AM

FEBRUARY 14, 2014

Happy Valentine's Day!

Happy Love Day, my peeps!  I won't make this long, as I want to spend as much time with the kids as I can.  They are off today, and we are going to spend the day together, hanging out.

I thought I would update you on my drs appt from last week, since I forgot to post earlier this week.  Basically, all is well.  My platelets are still in the upper 60s, which didn't make anyone happy, but it is what it is.  Nothing we can do about it.   The thought is that between the radiation last year, the reaction to the Temodar, and everything else I went through, my bone marrow just isn't as robust as it once was, meaning it isn't going to react in the same way and isn't going to come back as quickly.  The bad news with this is that, if I wanted to go into a clinical trial, my platelets need to be above 100, and I don't know if that is ever going to happen.  *sigh*

Anyways, we decided to move ahead with the Xeloda/Erbitux regiment, and I complete my one week of Xeloda today.  I have had no reaction or side effects from it - matter of fact, I went into the urgent care clinic at CTCA this week because of this wicked head/chest cold I came down with, and my platelets are stable, but my whites are low (damn it).  So, we'll see what the next few weeks bring.

Other than this cold, I'm feeling fine.  I am on antibiotics now, and starting to recover slowly.  We've all had it (poor Levi has it now), so it's making it's way through the family.  That time of the year and all, you know.

What else?  I think that's it.  Not too much else going on around here.  I am starting to make the initial inquiries about my potential return to work - I am so nervous about going back, but it needs to happen.  I just hope a) I can handle the 40 hour work week, and b) people accept me back at work, rather than constantly wondering when I am going to go back out.  I just want to get some semblence of normalcy back....I hope this is the right way to do it.

On that note, I am going to log off.  I hope you all have a wonderful day.  I'm thinking Valentine's Day around here is going to be postponed - being sick doesn't really lend itself to having a romantic day.  Oh - Levi and I are going to see Rodney next week....maybe I'll just consider that our date night!  :)

Comments:

Joan Bardee said...

have a great Valentine's day!

February 14, 2014 at 1:15 PM

 awarebear said...

I'm two treatments into a six or more week Erbitux regimen and can echo your sentiments wholeheartedly. Had treat ment 2 yesterday and today after radiation came home with my hair, scalp, brain on fire!

What took it to a manageable 7-8 out of 10 pain from 11 or higher was two 800 motrins. first 1.5 800's then follow up with another 400mg. All the docs assure me that rash is good and lots of rash is berry berry good! Arrrggghhhh! Using Eucerin Aquaphor for skin moisture. Thanks again for the post, really added to my understanding.

February 14, 2014 at 10:59 PM

 awarebear said...

Follow up comment that may help users/victims of erbitux.
This past weekend I had a strong bad reaction to my second erbitux infusion. Infusion on Thursday afternoon, increasing uncomfortable rash, ring of fire that got to the point on monday that I was literally so feverish that I was heating up frozen dish towels in 5 minutes on my head. Towels fresh out of freezer and stiff were warm/hot to the touch after 5 min on my head. Got ahold of chemo doc and he called in a medrol dose pack. Prednisone. ^ tabs day one 5 day two etc. Worked like a charm and was actually able to get good night sleep for the first time in a few days. Just FYI if you need the help.

February 19, 2014 at 11:22 PM

FEBRUARY 2, 2014

Erbitux Brain Dump

This may be a long, rambling post.  My apologies in advance.  Also, this may get very detailed and gross.....you have been warned.  Oh - if you're a guy, this may be of very little interest, especially towards the end.  I talk about make-up.  :)

I wanted to post about my Erbitux rash, for a few reasons.  I know there are people who google things like "erbitux rash" or "remedies for erbitux rash" and somehow get routed to my blog.  While that in and of itself is terrifying, I realize that it's kind of my duty and privilege to post how the Erbitux is affecting me and how I'm dealing with it.  My hopes in doing this is that maybe, maybe, I can help someone else who is dealing with this awful rash.  In addition to that, I like to keep myself updated, so that when chemo brain kicks in and I can't remember what I did last time, I can look it up and try to use similar remedies.

So....last Friday (well, two Friday's ago now), I had a single, normal dose of Erbitux.  For a month or so, my dr had been breaking the typical 500 units of Erbitux into two, 250 unit doses, in the hopes that I would have a lessened reaction.  Since that seemed to work, and my CEA is going down (and I'm doing really well on this regiment), he decided to shift to a bi-weekly dose of 500 units.  From a time standpoint, this makes perfect sense.  One single 2-3 hour session in infusion in two weeks, rather than two 2 hour sessions weekly makes much more sense, especially as I continue to think about going back to work.

My biggest concern was that the rash would kick back in full force, and maybe even worse, after the initial 500 unit dose.

It was a well-founded concern.  I am now at day 9 post-chemo (this is my third or fourth round of chemo), and the rash has definitely kicked in, after easing during a 2 week break.  The interesting thing is that the location and severity of the rash is different than it was last time, when I started this regiment in 2012.  I don't know if that's because I was on another chemotherapy drug along with the Erbitux last time, or if it's just a biological thing.  Regardless, it's different this time.

Side note:  some of you may be asking why this "rash" is a side effect of this medication.  Good question.  I used to know this, and admittedly, forgot.  So, I went to my friend, Mr. Google, and asked him.  Here's what I found., courtesy of the American Cancer Society on this page.

HOW DOES THIS DRUG WORK?

Cetuximab is a type of immunotherapy known as a monoclonal antibody. A monoclonal antibody is a man-made version of an immune system protein that fits like a lock and key with one certain protein.

Cetuximab is designed to seek out and lock onto a protein called epidermal growth factor receptor (EGFR), which is located on certain cells in the body. Some cancers have higher than normal numbers of these receptors on their surfaces. Once cetuximab attaches to these cells, it brings in other immune cells to help kill them.

In colorectal cancer, this drug does not work if the cancer cells have a mutation in the KRAS gene. Your doctor will test your cancer cells to be sure the cells are KRAS mutation-negative (they do not have this mutation) before starting treatment with this drug.

A rash on the face, neck, and trunk often starts during the first 2 weeks of treatment and goes away after treatment is stopped. The rash can look like acne, and cause infections, abscesses, or dry, cracking skin. It can also affect nails, eyelids, and the eyes themselves. Tell your doctor if it starts to bother you or if it starts looking infected. Sunlight can make the rash worse. Protect your skin with clothes, sunscreen, and hats, and limit your sun exposure while getting this drug and for 2 months after treatment.

In 2012, the rash was extremely prominent on my face.  Make-up helped, but it was still very obvious, and  very difficult from a self-esteem standpoint, especially when you couple the rash with being bald, which I was.  

This time, the rash has definitely kicked in on my face, but so far, it's no where near as bad as it was last time.  So far, the rash is centered on my nose and mouth area, popping up as under the skin pimples, with some random ones on the rest of my face.  In addition to that, I also seem to have them in and around my ears, which is very weird.  That part is odd, because it's just super tender when they kick up around my ears, sometimes making wearing my glasses or sunglasses painful.  The rash has also creeped down my neck, which isn't too bad, since I just use a little bit of foundation powder to cover that up.

There are really two parts of this 2014 rash that bother me.  First is the rash on my upper back.  It is just awful.  I may have Levi take a picture of it.  Because I can't reach my back to apply some of the topical stuff I use on my face (more on those later), the rash seems to be worse.  It is pretty bad - red, small pimple-like bumps all over my upper back.  And, they itch.

The other issue is that my skin is uber-dry, which is just made worse by the fact that it's winter in the desert.  There is no moisture in the air, and anything you put on your skin dries up immediately.

Oh - I guess there's a third component to the 2014 rash that drives me up a wall - the rash is also on my scalp.  I have hair this time, which helps hide the rash, but oh my goodness - the itchiness is enough to drive me batty.

So, how am I dealing with this rash?  We are hitting it from a variety of angles, and I know that those are making the rash less than it would be if we weren't doing anything.  First, I am on an antibiotic, doxycycline, to help combat the rash.  I take this twice a day, and started it about three days prior to my first dose of Erbitux.  I know this helps....I just know it.

In addition to this, I am using many topical treatments to help combat the acne and dryness.  I start my cleansing regimen with a gentle soap on my face.  I am very gentle with my skin; I wash it with my hands (which I have washed prior to this routine), as it's already tender and sore from the swelling caused by the acne.

***Using any acne products makes the dryness worse, and will not help.  Traditional acne medications work on the concept that there is a bacteria (or something like that) causing the acne.  Because the Erbitux rash is caused by a chemotherapy-type medication, acne medication will not work, and will only dry your skin out more.***

After a gentle rinse and drying, I apply a hydrocortisone cream, prescribed by my naturopathic doctor.  I use this day and night, and it helps to lessen the redness and helps with the swelling.  When I started using this (I had already had some of the rash on my skin), I saw a significant decrease in the redness and swelling.  Needless to say, I use this religiously.

After the cream (which is thick and helps my skin retain moisture), I then apply a calendula cream (also diagnosed by my naturopath).  I love this cream - it is gentle and smells nice, but I can also use it on other parts of my body, like my shoulders, elbows, and arms, where the dry skin seems to be getting worse.

After that, in the morning, I use a daytime moisturizer that has an SPF of 15.  This is essential, as Erbitux skin is extremely sensitive to the sun.  At night, I use a nighttime moisturizer, which is a bit thicker.  I also apply an eye cream at night, as the skin around my eyes is very dry and will flake off if I don't apply a little extra love there.  :)

At night, I use a shea butter lotion (it's really more like a thick cream) on both my hands and feet.  Erbitux can and will cause dry, cracked skin, and the best way to combat that it using lotion....all the time.  I actually carry two different lotions in my purse, and we have bottles of lotion in almost every single room in the house.  I douse my feet in the thick cream at night, then cover them with aloe-infused socks to maintain the moisturizing effect.  I have also used white, cotton gloves (found them at the pharmacy at CTCA) over a thick layer of cream.  I am constantly using lotion on my torso, as the skin there seems to be permanently dry.  It's not uncommon to see me in my house, slathering lotion on my skin before I go somewhere.

Most of the cracked skin I've gotten is on my thumbs, and it can be pretty painful, in the way that a well-placed paper cut can.  I asked my docs about it - they recommended using super glue to hold the skin together.  Believe it or not, it worked!  I have a bottle of that sitting on my counter, and while my kids think I'm nuts, it totally works.

I talked about my dry scalp - it itches so much, and there is acne on my scalp, so my poor head is just insanely sensitive.  No coloring my hair for a while, which is fine.  I guess.  :)  I have gone through a bunch of shampoos and conditioners, and none of them really worked well.  I talked with my naturopath about it, and he recommended Selsun Blue.  I was skeptical, but guess what - it worked!  The itching and sensitivity hasn't gone away completely, but it is definitely getting better.  He also said that you can use it as a body wash....I tried that yesterday, and it did work.

What else?  Oh - my make-up routine.  I think this is important....as girls, we want to look pretty.  I know that I wear make-up even on days when I am not leaving the house.  I just feel better when I have some mascara and blush on.  I've learned that that is just how I am.  So, you can imagine that, with a bit of acne on my face, I am obsessed with wearing make-up.

I've learned that spending a little more on good make-up is worth it.  The make-up lasts longer, is easier on your skin, and works better.  I have tried several different brands, and I like MAC.  This has been especially true with this rash.  I went in, and the kind ladies there were more than happy to walk me through what products might work best.  You can go in and for a fee, have a complete make-over, but I go in and ask for a specific item (say, foundation) and they are willing to help for just the cost of the products.

This time around, after all of my moisturizers, I use a make-up primer that has a bit of a tint in it.  It helps even the skin tone out, and makes the foundation I use last longer.  Now, as a foundation, I actually use a concealer.  For my foundation.  It's brilliant.  It covers all of the redness and isn't heavy, which I really like.  Is it unconventional?  Yup.  Does it work?  You bet it does.  I then use a foundation powder to set everything.  After that, I go into whatever make-up I want to use for the day.  I've found that, for the most part, this routine will last me from say 7am until I get ready for bed at 8pm.  If I'm going out somewhere, I may touch-up with my powder foundation, but that's it.

I have found that using an eye shadow primer works well, too.  The skin around my eyes is so dry that it will absorb the make-up, if I don't use a primer.  Using the Painterly paint pot from MAC helps even the skin on my eyelids out, helps set the make-up, and also keeps my make-up from running, which I was having a wicked time with.

With regards to the overall issue of dry skin, there is one other thing that I have found helps.  Oatmeal baths.  Sitting in the warm (not hot - hot water dries the skin out...) bath, letting the oatmeal do it's thing, helps enormously.  Don't rinse the oatmeal off when you get out, and try not to scrub your skin dry.  That's good advice for your daily showering, too.  Try to let the towel gently run the skin....scrubbing the skin dry will only overdry the skin and irritate it.

Let's see.  I think that might be it.  This drug, while well tolerated, is not easy to deal with.  No, it doesn't make me nauseous, and it doesn't cause me to be down and out for days on end.  For that, I am grateful.  But, dealing with the rash, which gets worse over about a 2 month period then, hopefully, starts to calm down, is hard.  It's difficult to see your body transform from something you know to a new, seemingly ugly place where you're forced to reside.  As a woman, that can be more difficult than dealing with the nausea or headaches or vomiting.  I know it has been for me.  Does that make me arrogant or snooty?  I don't think so.  I hope not.  I just know that, as a woman, how I look (or how I feel I look) can fundamentally effect my mood, my emotional stability, my entire day.  Having to deal with cancer, then having to deal with a sudden, immediate onset of acne, dry skin, and tender scalp can be overwhelming.

Talk with your doctor.  Ask him to help you with some preventive meds to help with the onslaught of acne.  Check online with some of the amazing organizations that can connect you with others that are dealing with this medication.  Try to find a "Look Good Feel Better" meeting through the American Cancer Society.  Spend a little time (and maybe ask for gift cards for make-up) and learn some new make-up techniques.

And, remember.  No matter what - you are beautiful.  Your family and friends love you....acne and all.

Comments:

drj said...

Thank you SO much for this post! I just started Erbitux for the first time last week, and guidance on what makeup worked for others was exactly what I was looking for! I am making a list on MAC cosmestics right now!
Thanks again. :)

March 15, 2014 at 5:32 PM