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!

In Between

I haven't posted for nearly a month.  What could possibly have kept me out of the virtual world for so long?  In all honesty, I've just been so busy with life that my computer time has been limited.  These past couple of months I have been living in between.  I am an official, card-carrying member of the sandwich generation.

I have a very small family in town.  My mother was an army child and her family barely lived in the US during her childhood.  They lived in Hawaii (before it was a state), China, the Philippians and she met my father as a teen in Nova Scotia. When it was time to return to the US, her parents, brothers and sister all scattered.  Somehow we ended up in Ohio, which is where my mother and father have been since.  We have no extended family locally.  It's just my parents, step-parents and brother. 

About a year and a half ago we encouraged my grandmother to move from Philly to Cleveland to be nearby.  She agreed and moved here to an assisted living facility with her husband.  At that point, my grandma had Stage 4 kidney disease.  Over the past few months she has progressed to stage 5 disease.  At the same time, my mother, who has dealt with severe back injuries and pain, was preparing for major surgery that would require rods, screws and a long, difficult recovery. 

All of this background just to tell you that I have been wearing my caretaker hat over the past couple months.  My mother hasn't needed much.  I actually wish I could have been around for her more during this time.  I made her some homemade soup and took her tons of DVD's, but what she needed most was sleep and rest...so staying away was actually better.

 My grandmother, on the other hand, needed my help.  I've spent a lot of time this past month taking her to doctors appointments, getting her admitted into the hospital and getting her dialysis started.  It was a difficult transition for her, but she's now managing like a rocks star. 

My kids have also had a lot of activities.  The end of the school year is always full of stuff.  Throw in a little bit of work travel and I was left juggling a lot of balls in the air.  Trying to keep everything afloat.  Just managing most days... 

I haven't spent a lot of time thinking about Cystic Fibrosis.  It's been nice!  I've been feeling great!  I've been as compliant as humanly possible.  The Ethambutol seems to be having no side effects.  I had to have an eye exam prior to taking the first dose.  They also had to take pictures of my optic nerves.  I guess optic nerve damage is a possible side effect of this drug.  I'll go back to the Ophthalmologist every 3 months to ensure that all is going smoothly.  So far, so good!

This past couple months have proven that I am officially part of the sandwich generation.  I spent a great deal of time taking care of my older and younger family members.  I am so thankful that I have been feeling well enough to take on this role.   I love being needed.  I love being able to help...and I love not being the patient myself! 

Mom and grandma are doing great!  This is a picture of my grandma, mom and aunt in Hawaii, where they lived for several years in the 1950's.   My mother is wearing the striped dress.  My grandmothers first name is Avalon.  She is the reason I named my daughter Emma Avalon.  I am more like my grandmother than any other family member. 

I sure do love these women!