Flash back to 2002

Yesterday I was cleaning out folders at work.  I found a folder that had at photo of me from 2002.  In 2002, I was actively dating, pre-tumors and muscle disease...and spending a huge amount of time with my friends.  It is also prior to having my eye done and my face carved on.  My hair was also very blonde and fluffy!

I barely remember 2002 and my thoughts at the time.  I do remember I was living a pretty fast life.  I had just had my vision corrected so I dumped the glasses.  This is when I started to focus on the genetic eye bags.  Within a  year of this photo, I had my bags removed and several tumors.  I was diagnosed with cancer within that year.  My life changed forever in that year.

It is easy to think about all the bad things that had happened since 2002 but instead I like to focus on the positive.  I did get rid of my bags on my eyes.  I quit "blonding" my hair, and I slowed down and became a better person. My priorities have changed drastically.  I got rid of things in my life that pulled me down. I bought a house. I focused on being a great Mom.  I cherish every single day because I know they aren't guaranteed. 

It is amazing how life can change in 12 years.  I wouldn't take back one thing that has happened over those years.  What a fun thing to spark my thought process.

Dr. L.....the official word

I met with Dr. L this morning.  I always enjoy catching up with him.  He was very pleased with my CT Scans.  I told him I was nervous about the lymph nodes mentioned but he said that it isn't usual to have lymph nodes show up and they don't worry about them if they are a centimeter or smaller...which mine were.  I asked about the ovarian cyst.  He said it was only 2 cm which was very small and not something to be concerned about at all.  He also said  my blood work was all normal.

He also provided copies of my infusion notes from 2003 and 2005 to take to John Hopkins in January.

All good news.  We always go back and forth on how long to go between visits.  We agreed to wait 6 months unless I have issues then call to get in sooner.  That works for me.  That means I won't see him again until the snow has melted and the spring bulbs have bloomed!

The Auntie weekend

This past weekend, the Aunties got together for a visit in Salt Lake.  As they are spread from tip to toe, this doesn't happen often.  Marsha was down from Alaska and Shirley from New Mexico.  Mom came up with them to visit Mars and John.  We met up Friday at my house for a weekend visit.  I made a yummy dinner of White Chicken Chili.  Saturday, we did a driving tour of downtown and enjoyed a lunch at the Lion House.  They went up to help Mars and John with some cleaning help and I joined them in the evening for dinner.  John made a family favorite of Italian Delight.  Sunday, we went up Millcreek canyon for a fall picnic. 

The canyon was absolutely beautiful.  Many of the leaves had changed already but it was still beautiful.  The day was actually pretty warm.  Marsha's friend Cathy and her husband Paul joined us.  After we had lunch, we sat around and made pine needle baskets.  Before we knew it, it was getting late and the ladies needed to get on the road home to St George.

It was so great seeing everyone and I simply loved having them stay with me.  I got to practice my rusty hostess skills. We pulled out some old family recipes.  I even made apple fritters with Carolina sausage!  One of my favorite things that happened this weekend was something I wasn't even part of.  Sunday morning, the ladies all went downstairs in their jammies and visited on the guest bed.  I imagined it was just like when they were little girls.  I know how much I love my sister and our special times together.  I hope they had the same moments while they were together this weekend.  It is rare they are all together...just the girls.

As always, here are some photos.....my favorite part of blogging.

Shirley, Mom, and Marsha at Lion House Pantry

Philip and me at Lion House Pantry

Shirley, Mom and Marsha outside.

The east view from the Joseph Smith Building "roof"

West looking over the temple with
Philip jumping in the photo

View of the temple.  Really spectacular honestly.

Shirley and Mars at Mars and John's house

Mom, Me, Marsha and Shirley at Mars and John's

Mars at the Millcreek Canyon picnic



Shirley, Marsha, Mom, John and Mars

The peaks up above

Philip and Mom

Cathy and Marsha making baskets

Philip's basket start

Roasting Marshmellows for Smores

Philip's Fall Canyon 2014 photo

I am so glad I was able to hostess the ladies and get to spend some time with them.  I really enjoyed myself.  It filled my entire being with joy and happiness.

Annual scan in the can

This morning, I had my annual CT Scan.  This time, they just did my trunk  - shoulders through hips and pelvis.  I had to be there bright and early, fasting so I could drink my contrast.  I got a nice leisurely 1.5 hours to drink it and wait for it to process before I was called back to the room.

The actual CT Scan as pretty quick.  As always, they are nice and try pretty hard to keep you as comfortable as possible.  The actual scan was only about 5 minutes.  I got the lovely heat producing iodine.  Just love that.

John Hopkins wanted a copy of my slides so I mentioned it to the technician.  I waited about 10 minutes and was presented a very pretty CD of my scan slides.  How efficient is that??  I am pretty impressed!

I stopped and got the car washed and went to the grocery store on my way home.  Got me some kibbles when I got home and dialed up my results.  Much to my surprise, they were already read and posted on the website!  I was done at 9:30 and by 11:45, the results are done.  That is just way efficient.

From my non-medical knowledge, it appears my lymph nodes in my lower abdomen are larger than normal but have not grown in the last year which is good.  I am surprised to read I have an ovarian cyst.  I've had one before and had it removed.  That was many moons ago.  I'll have to talk to Dr. L about that as I believe things like that are the devil's playground and probably should be addressed. 

I won't get ahead of myself.  I see Dr. L next Wednesday for the official opinion. 

This weekend, the aunties and Mom are coming up for a visit.  I've been busy getting ready to have them all stay here while they visit and help Mars and John.  I am excited to see everyone!  It is a beautiful Fall weekend!

Have a great one!

Everybody's in the house getting crafty

Recently, I went to another craft class.  This is the Glitter and Bacon craft class lead by the Mom of a blogger I enjoy following.  This time we did Halloween crafts.  It was absolutely perfect because I was wishing I had a banner for the fireplace.  So I went to enjoy the ladies and be one with the glue gun.

We had an ambitious schedule of 4 projects but Kaylynn makes it so easy to follow.  She had kits together with all the supplies already cut and ready to go.  She also has a sample for us to view.  There were 8 ladies at the class I attended  It was perfect to fit around the table comfortably.  We started by making a witches hat.  Then we made a banner, skeleton basket, and finally a star.

In addition to crafts, she always makes a treat with bacon.  She made some fantastic cheeseburger dip and also had bacon jam with an assortment of bread and crackers.  Of course, a few veggies and then as a special treat, her son made homemade mozzarella cheese with balsamic vinegar drizzle.

Same as prior classes, she has tons of accessories like every color of glitter you can imagine, inking pads, sparkles, and even gathered crepe paper.  It is like a crafters paradise!

I really had fun and I am so happy I was invited to join these crafty ladies.  



Vintage Moon star

Decorative witches hat



The skeleton basket with glittered
skeleton and festooning

Banner in process

Ladies getting crafty

Banner in my house.  Looks perfect with my witches.

Happy Halloween!!

And so it begins...I got accepted!

I got a call this morning from John Hopkins.  They agreed to meet with me.  I was even able to get into the doctor I wanted to see.  They offered one date at one time. That was it.  So I have an appointment on January 8 at 8:00 am.

There are several tests they want me to have before I see the specialist.  My insurance does not cover out of network physicians and Maryland is absolutely out of network.  So it is all out of my pocket.   I started a board review of my medical records at my insurance company to see if they will cover the visit (and hopefully the tests).  If not, I will have to get them here and send them to John Hopkins for review.  I need to have a pulmonary function test, MRI of my thighs, and 6 specific EMG studies.  I think it would be best if I could have the EMG studies at JH because I've gathered over the years, they are tough to interpret someone else's work.  But it all hinges on my insurance company's flexibility.

I'm pretty excited but it is also daunting.  I'm a little afraid what I will learn and I really don't want to go to Maryland in January.  But so be it and I'll face it and get it done.  I'll keep you posted on what I learn from my insurance.  I am thinking of this as a "Merry Christmas" present to me.

Ring a Ding!

Today I had a follow up with my radiologist, Dr. C.  I know we had a....serious....start to our relationship but I can't tell you how much I enjoy visiting him. Today he came in with a big smile on his face.  I just love that.  He felt around and though things were going "remarkably well".  He was so pleased that everything felt good and he even commented that it appears everything is symmetrical visually and my skin has recovered pretty well.  I totally agree.  He asked to see me in a year unless I have further problems.  I love Dr. C and all his staff.  I would love to see him anytime but getting a 12 month pass from a cancer doctor is like winning a race.  It is something to celebrate and be happy about.

It's been 4 months since I finished radiation.  It almost feels like it's been way longer than that.  As I mentioned earlier that I feel like the trauma is almost all gone and in the past.  You might recall I didn't ring the bell when I was done with radiation.  I guess because I know that the end of treatment doesn't necessarily mean you are done with cancer.  But today, I rang my own bell in my head.  It is days like today that I celebrate because I am still cancer free and living life.

Next cancer step is a full body CT scan next Friday and then a follow up with Dr. L the following week.  I have my fingers cross that it will all come back clear.

Major paperwork done!

I've been working on getting my medical records together for John Hopkins.  They require my medical records back to diagnosis before they will even talk to me about an appointment.  I counted...57 pages and that was just the important stuff.  I hope everything is in there they need.  They should get it Wednesday.

They will spend 10 days reviewing my records and then someone will contact me to let me know if I qualify to come see them.  I have my fingers crossed.

Poof. Just like that

Not completely sure what shook it up but I woke up this morning with a  spring in my step and a song in my heart.  I used my energy to have a great conversation with Philip about college.  Then I went to work on a big list of chores.  I got a little stuck this afternoon sorting paperwork.  Loads and loads of paperwork.  Tedious job but good to get done.  I also got my Halloween decorations out and put around. 

I also talked to my Myositis friend Ann.  She shared her path to SS disability.  She had some tips and tricks to help me start planning for my exit plan.  Not sure I am ready yet but it was nice to get some ideas.  I think first step is housing changes and I'm not willing to rock the boat until Philip leaves for college.

It is nice to feel better.

Freakishly long

It's been awhile since I talked about the brow and lashes.  Probably a clear indication that all is right in the world again since I am no longer obsessing about them.  But I thought I would give you photo proof.

The difference has been that I've been religiously using the super expensive brow and lash serum, Revitalash and Revitabrow.  I have actually played around with an every other day schedule for my left eye (the un hurt one).  I must say I was skeptical that it would work but now I could honestly be a paid spokesperson.

This is backwards so the one on your left in this photo is my right eye.

Look how freakishly long the one eye is!  Even on the hurt right eye, I have a few long lashes and at least there are lashes in the fry zone towards my outer eye!  I'm positive they would not be there at all without the "magic juice".

And let's spend a moment talking brows.  While I got them colored 5 weeks ago, they are still dark and fairly full.  On the right brow, it gets a little fuzzy on the outer edge (major fry zone) but there are brows and they represent well.  I still haven't had the balls to wax them.  I have plucked some errand strays once I properly brace myself for the aftermath.  The dent is still there but as Dr. S promised, it filled in and is way less obvious.  I feel like part of my brow bone was shaved off as it dips too but it could be the cancer created that little dip.  Regardless, it looks okay.

I'm still rocking the camouflage bang too.  My hair guy suggested we flip my part back but I am not sure I am ready for that yet.  I kind of like the camouflage cover.  It is almost like a badge of honor for me.

So all is good on the eyebrow and eyelash front.  It is ALMOST like the trauma of radiation is erased.  And that is a good thing.

Garbage in, garbage out

Where to start.  I don't know what came over me but I joined an online dating site in the past month.  Maybe it was being hopeful that there just might be someone out there that is interesting.  But really I am doubtful that it will work and my past experience is that online dating sites create an environment for scammers, liars, and hopeless people. 

My membership was about to expire when I received a note from a man in Utah.  He lives out in the south end of the valley.  So I wouldn't have to renew my membership at the site, I gave him my anonymous email address.  We started going back and forth sharing information by email.  Within 2 days, he said he would prefer to text on our phones.  For me, that crosses another line for me.  I don't want some psycho with my cell phone number.  So I kept emailing for a bit longer.  1.5 weeks after we first started emailing, he asked if we  could meet....this week.  Again, this goes against my cautious side.  While I don't mind meeting in person,  I want to complete due diligence and I want to see if it is even worth my time and energy.  The biggest issue is I am crazy busy this week so I replied that I would meet him but I would need to wait for next week because I am a "Mom" this weekend.

Suddenly, our several emails a day came to a screeching halt.  So after 2 days, I decided to email him to make sure he didn't miss my email.  I thought I was being nice and said if he received it, he must not want to pursue getting to know each other and to have a great day.  He emailed back and said I was too slow and he lost interest.  I emailed back and said that I was sorry if he got the wrong impression and that he must remember when he had kids and how much time they take.  Right?  I did say I was surprised by his impatience and sorry I wasn't able to drop my plans for a date with a  total stranger.

I got the most raving email back that still has be laughing and kind of stunned.  He said I was incredibly slow moving and bored him to tears.  That he tried to meet me to move things along but when I said I was busy, he lost interest and that  I should know better than to "bitch slap" a guy for being honest.  What?

While I consider myself boring because I don't do lots of stuff,  I consider myself a great conversationalist and honestly pride myself on writing good stories and interesting emails.  I had not revealed my mobility issues or medical status.  I never said I watch 4 hours of TV (or more) a night.  I didn't tell him I don't do much because I am sick.  He based his opinion on just the fact that I wouldn't be bullied into rearranging my schedule to meet him on his demand!  I'm floored.  And he was so incredibly rude.  What a Jack Wagon!!  I feel sorry for the women that find him charming before his bitter rude side comes out.

You guys know I am pretty self reflective.  I guess in the "exciting" department, I am not super outgoing and spontaneous.  I am sort of boring in my activity level but I do not think my mind is boring and that is all I allowed this man to see.  Maybe in a "online dating" world, I am not thrilling because I am not sexting and jumping all over the first guy that shoots me a message.  I'm going to  keep noodling on this because there has to be some nugget of learning I can take away from this feedback.  But I refuse to internalize it and own it because I don't feel it fits. 

So I guess if you are still awake and can make it through my boring blog, let me know if I bore you.

My current thought is "garbage in, garbage out".  This is a term I used to hear in the office.  If you get crap input, you receive crap back.  If this guy was bored, maybe he needs to look in the mirror.  He lead the tone of our messages.

Partly cloudy with a chance of rain

I usually try to only blog when I feel positive and "up".  I figure people don't want to hear me blog about daily dull drums or irritations in life.  But recently I've heard lots of discussions about how social media allows people to "brag" and only tell the positive things in life.  It is causing many people to feel disappointment with their "average" life.  In a bout of honestly and being real, I decided to blog when I am not a happy and positive camper.

For the past week or so,  I've been struggling emotionally with where my life is.  Traveling to Boston was good but it forced me to face my physical limitations and display them very publicly.  On top of that, I am struggling with what my life is at this moment.  How hard everything is.   How I hoped my life would be so different.  Planning for the future "what if".  How I just can't make myself do stuff.  I miss the old me.  I miss the me that could do just about anything I wanted to do.

Now I don't think it is depression.  I think it is a very real and very honest self reflection and dealing with not only terminal cancer but a seriously debilitating disease that is progressive.  That is simply a heavy load to carry.  It is scary and it sucks.  I have been here before.  I know I will be here again.  It is just the way my feelings work.

I've learned to be kind to myself and push myself to find things that  make me  happy.  I pick up the phone and call people.  I try to get out of the house.  I do something creative.  And suddenly, that cloudy feeling leaves and the happy and optimistic attitude returns.  I am waiting.  It just has to come soon.  In the meantime, I remind myself this isn't my fault.  I did nothing to deserve this.  It simply is.  And I must love myself, my body, and my short comings.  Because there is still many things about me that are pretty damn cool and I refuse to be defined by my health issues.

So when you feel down, know you are not alone.  Everyone gets that way from time to time.  It is part of living a real life.  And don't compare yourself to someone else's "high reel".