Nothing and Everything

Two lovely people pointed out today that I no longer blog.  It has been a while.  I haven't quit.  I've just run out of things to write about...   This writers block seems to have coincided with my excellent health status as of late.  This blog has always been my respite when I was feeling confusion or fear related to my CF.  I can honestly say that I have not been having any of these feelings.  I had clean margins following the pre-melanoma skin excision.  At my August pulm appointment, my PFT's were higher than they had been for 10 years and I feel equally as excellent! 

So what have I been filling my days with over the past two months, now that I have moved into a phase where I'm not being forced to obsess about CF day in and day out?  I've been working hard, loving my family and enjoying my off time immensely.  In the past 2 1/2 months I've traveled to New York City, Nova Scotia, Washington DC, Boston and Toronto.  Half of this travel was for work and half was for play.  My very favorite experience from these trips happened on my getaway with my husband to Boston.  I got to knock Whale Watching off of my bucket list.  It was absolutely breathtaking...amazing...wondrous!

Last year at this time I feared that my life and my health would never return to "normal".  I was grieving the loss of the life I had before I had to incorporate CF into every hour of my existence.  For the past 2 months I have gotten to experience life as it was again and I couldn't be more thankful.  I don't want to waste a moment of it.  I now do an hour of treatments a day, take a couple handfuls of pills and complete an hour workout...CF does not own the other 22 hours.  So, I guess that's a big part of the reason I haven't been blogging.  I really see this as a CF blog and for now, at least, CF has been put in its place.

I came across 'Desiderata' today, I thought it related and I thought I'd share...

Go placidly amid the noise and haste, and remember what peace there may be in silence.

As far as possible, without surrender, be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant, they too have their story. Avoid loud and aggressive persons, they are vexations to the spirit.

If you compare yourself with others, you may... become vain and bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs, for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism. Be yourself. Especially, do not feign affection. Neither be cynical about love, for in the face of all aridity and disenchantment it is perennial as the grass.

Take kindly to the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul.

With all its sham, drudgery and broken dreams, it is still a beautiful world.

Be cheerful. Strive to be happy.

Max Ehrmann c.1920

Freeing

You Don't Need to be Happy or Positive

by Patty Sherry, author of Share Your Love Story

Ridding myself of ALL negativity,anger, fear, and sadness is not my goal. Getting over this is not something I need to do.

Don’t get me wrong, I love to be positive, happy, and to feel good, the key is I dont NEED to.

Being angry all of the time can make you sick; some say such negativity is toxic! I don’t completely agree with this belief. I say that anger, fear, and sadness is as much a part of my human experience as LOVE is.

Avoidance of these emotions is not necessary.

That kick in the stomach, pain in my heart, or that headache actually comes from the belief that these “negative” emotions are somehow wrong, bad, or a state of being I need to get myself out of.

Believing I should be over this is the hard part!

Fighting the fact that I am here in the first place, and thinking I need to be over there….feeling happy, becomes my struggle!

Positive thinking can make me sick? Well in a way it can…when positivity becomes a need.

So I am releasing the idea that happiness and being positive is a permanent state I must seek, and I am being more gentle with myself when I am in one of those “negative” places.

It’s so easy to get caught up in the belief that I am or YOU are doing something wrong or bad if we are not happy. Igniting that internal judgmental dialogue, ” I’m so stupid!” “Here we go again!” flows easily, even automatically.

Accepting what IS; I have no goal to get over anything! I remind myself that what I feel has to do with THIS moment. Change can come in the next moment.

I become more FREE in each moment, you do too. Running or hiding from any emotion YOU or I feel is not necessary, but rather we can embrace and shift it if we so CHOOSE.

Life is my party…and I can cry if I want to. Freeing isn’t it?

Compliance, Judgement & Progression

A fellow blogger, Piper, over at A Matter of Life and Breath wrote an amazing blog post yesterday and extended a challenge to others to write about their thoughts on CF control and progression.  So here goes...

 I am an old CFer, who has by luck or biology or by the grace of God, had an easier road than most with this disease.  It has limited me little up to this point and for that I am extremely fortunate.   However, I don't ever feel like I have "control" over my disease.  Instead, I feel like I do what I can to "manage" my disease(s) on a daily basis.  It takes A LOT of work.  It take enormous amounts of patience.

Sometimes, it even takes giving yourself a break.  Allowing yourself to not be perfect.  Treatments are crucial...compliance is so very important...  Yet, sometimes, life gets in the way.  My personal definition of compliance involves working hard and doing your best.  Everybody's best is different.  I think people in the CF community like to compare each other.  If this one is running a marathon, while that one walks around the block for exercise, the one who walked is not doing "good enough".  My wish is that people would stop making these comparisons.  There will always be someone doing more than you.  There will always be someone doing less.  I think each of us should only judge ourselves when it comes to self-care. 

I also think that sometimes a person can do everything by the book, yet still decline.  This is the nature of the disease.  I think judgement coming from others regarding this decline is harsh.  That person who is declining is often judging themselves harshly enough already, even if they have done everything in their power to stave off the progression. 

This is going to sound odd to some people, but I honestly feel judged for being "too healthy" within the CF community (no, I'm not complaining about being a too healthy CFer...I'm fortunate!).  A lifetime of doctors, hospitals, pills and daily treatments doesn't make me a card-carrying CFer in some people's eyes.  Yes, I have been told this directly.  My lung function is not low enough to qualify.  I haven't needed IV's enough times.  I have been told that I shouldn't have feelings regarding my CF, because my road has been easier. 

Here's the deal.  This is MY experience.  This is MY journey.  These are MY feelings.  I admit that my road has been easier, but I am entitled to my feelings, fears, worries.  Just as I am entitled to celebrate successes without being judged.  I wish more people were accepting of that fact that EVERYONE has a unique experience...all of them valid.  Yet, I know that the judgement will continue to exist.  Honestly, it's human nature.  There are people who feel better about themselves when they put down others.  I consider that the judges problem, not the problem of the judgee.
So, I have been feeling excellent lately!  So much so, that I have had very little health-related news to blog about.  Yet, the MAC infection persists.  I have an appointment in a week in a half, where I will be cultured to see if the MAC has been suppressed at all.  If not, we may need to switch things up again.  I struggle with the unpredictability of this disease.  I think I keep motivated to exercise regularly and be compliant with my treatments to give myself a sense of control.  It makes me feel like even if nothing is going to change, at least I'm doing something.

These are my jumbled ramblings about compliance, judgement and progression.  If you wish to take the challenge, read below...
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.
2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.
3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.
4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.
5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved one's.

Fun Surgery Pictures

I have my skin excised today.  Besides some excess bleeding, all went very well!  It was relatively pain-free.  I did find out that what I have is pre-melanoma.  This made me feel thrilled that I caught it and took care of it before it progressed.  Now I just need to be more diligent about getting screened annually. 

So here's how things went...

 This is a picture of the eye-shaped cut that he made, prior to removing the actual skin.  They remove down to the fat.

This is after they removed the skin.  They remove all of the skin down to the fat.  I have to wait to hear from pathology to ensure that they got clean margins.  If not, I go back for them to take more.

This is after I was all stitched up.  It required 8 internal stitches.  They used steri-strips on to to avoid external stitches.

In all honestly, it really wasn't bad at all!  It was WAY easier than a PICC placement.  The best part is that I've got friends who have told me that they are now going to get their skin checked.  You just never know with this stuff.  I was certain that the spot was just a benign little freckle.  Who knew?  I hope this concludes all posts about skin issues.  

In other news, we have been having a FABULOUS summer.  We have had a few out of town visitors, we have been swimming quite often, we  have been busy, busy, busy!  We are really looking forward to a 4 day little trip to Washington DC with the kiddos.  I loved my first trip to DC as a kid!  A couple weeks later the hubby and I will be getting away to Boston ALONE for 5 days.  I can't wait to eat my way through the city!

I hope all is right in your world... 

Abnormal

Don't you hate when you get a message from a doctor, that you have TONS of questions about, after hours?  I do...  About an hour ago I listened to my voicemail and had a message from my Derm.   It turns out that my biopsy showed abnormal cells in my skin lesion.  They said it's not necessarily skin cancer, but that I will need to schedule a 30 minute surgery to have the area excised and I will need stitches.  They will then do a more complete biopsy of the excised flesh.

So after I first listened to the message I thought...no big deal.  It's just a little slicing and digging in my arm.  It's only going to take 30 minutes.  I've had 2 organs removed...this is NOTHING.  Then I googled pictures of skin excisions.  Icky!  It looks like they take a big area and that that go pretty deep.  Sometimes they have to put in an inner and outer row of stitches.  What a pain in the ass!

So I've decided to shut my computer down for the night after posting to my blog so I don't freak myself out more than necessary.  I tend to do that quite often when I start researching my own medical conditions.  I refuse to think of this as anything but a harmless little freckle.  I'm sure they are just being proactive in removing the area.

I do wish that my abnormal cells would have been found near one of the horrible tattoos that I got the day I turned 18...just because I could...   Better yet, it would be nice if the cells were found on my belly and the excision could double as a nice little tummy tuck.  No such luck!

On the lung front, I feel AMAZING!  I really feel like this combination of antibiotics, along with the Spireva are working wonders.  After my appointment in May, Dr. Dazzle let me go back on a 3 month clinic schedule.  I was going monthly for about 6 months, then every two months.   I've progressed to the point where quarterly will do :-)

I'll keep you all posted about this new skin stuff. 

Have a fantabulous 4th of July weekend!  Please wear your sunscreen!

I'll Take a Poker Face Please!

I had an interesting Dermatologist appointment the other day.  I've never seen a Dermatologist before, but after watching this video I decided it was time.  Please, please, please take a few minutes to watch.

Dear 16 Year Old Me

So I very rarely go out without my SPF 100 sunscreen.  Living in Ohio helps too, as we rarely get sun.  However, I grew up getting burned quite often.  As a teenager I sat in the sun with vegetable oil slathered on my skin.  It was the thing to do in the late '80's and early 90's.  In my early 20's I actually went tanning now and then.  It was only after I started working with cancer patients that I started caring about my skin. 

This video was enlightening.  I never really made the connection that those of us with CF might be more prone to skin cancer.  We are immuno-compromised by nature.  That's why we pick up so many "bugs" that normal/healthy people don't...  Dr. Dazzle said that this is how/why I picked up this nasty mycobacterium.  Those who are immuno-compromised are at a greater risk of getting skin cancer too.  That mean us guys!   We need to be more careful.

So I had this freckle on the back of my arm that was very dark compared to my alabaster skin.  I have lots of freckles, but this didn't look like the rest.  I'd love to take a picture and show you, but it no longer belongs to me.  It's in a lab somewhere awaiting analysis.  The appointment started off with the standard conversation about my my CF...the normal stuff I get when I list my meds and tell any doctor other than my Pulm that I have CF...the "Wow, shouldn't you be dead! or You're REALLY old for having CF! or Are you sure you have CF?"  I am still alive and kicking.  I know I'm old.   Yes, I'm sure I've got CF.  We then moved on to my skin.  She looked over every inch of my skin, starting at my feet.  At which point I told her that my real concern was this freckle.  I lifted my arm to show her and I kid you not, she said "Oh man, that shouldn't look like that at all!  That's way too dark!  That's a grade 5 (something or other)".  She then had her assistant take a picture of it, the needles came out to numb my arm, a blade sliced the lowly little freckle off and the biopsy was complete.  I had no time to prepare.  The entire process took about 45 seconds.  I was bandaged  up and told that my results would be back in about two to three weeks. 

I left not really registering what happened.  I left wishing the doctor had more of a poker face.  She looks at weird skin all day long.  I'm pretty surprised about how much she reacted to my harmless little freckle.  I kinda wish she would have said something reassuring, like that we're just going to do a little biopsy as a precaution, but it will likely come back normal.

I REALLY think this is going to be benign.  Even if it is cancerous, it would VERY likely be basal cell, which is so easily dealt with.  My father has basal cell carcinoma and it's no big deal.  He has to get his skin checked and parts cut off here and there, but it's really not so life-threatening.   I'm glad I finally went, so I could stop wondering. 

So here's my plea for all of my CF friends out there...   PLEASE protect your skin!  Not only to prevent the potential of getting cancer, but also because we're living much long and you don't want to have to deal with too many wrinkles in old age!

My Dad is Rad

I adore my father.  He is the nicest, most sincere man I've ever met.  My dad is a hard worker, staying at the same job for 35 years.  He's a golfer.  He is kind.  He is simple.  He's a worrier.  When I travel I still have to call him when my plane lands AND when I arrive at my destination.   There is no doubt who I got my "worry" traits from...  He adores my children.  He adores his only daughter. 

This is one of my favorite wedding pictures.  My hands were freezing and my father was attempting to warm them up.  He was taking care of me. 

Happy Father's Day, Dad!!!  I love you for now and always!