Follow ups continue - Dr. S

This afternoon, I went for a follow up with Dr. S, my fabulous surgeon.  I've not seen him since April.  He was anxious to see how I was doing after the radiation.  It is really hard to tell what is surgery related versus radiation related.  My eye is puffy often when I wake up in the morning.  It seems to get better as the day goes on but it does have a mysterious droop.  He asked about the numbness which is still present.  Then we  talked about eyelashes and eyebrows.  You might recall I have about 1/2 a brow and I lost about a 1/4" hunk of eyelashes and what is left is very sparse.

He really suggested I try Latisse but I told him I heard it can change the color of my eyes and I just couldn't bear to lose my Grandma Daisy blue eyes.  So we are trying Revita Lash.  It is a conditioner that you use nightly and it promotes hair growth.  He suggested I use it on my lashes and my eyebrows. But there are different formulas for both.  I sure hope it works because for both tubes, it was the best part of $300.  They said it should last about 3 months but as soon as I stop using it, the hair loss will come back.  I'll give it one tube test (hahah) and see what I get from it.

Both Dr. S and his staff kept commenting how great I looked and seemed like I was feeling great.  I suppose overall, I do feel pretty good.  Good thing I have my camouflage bangs.  They are working great.  And I read online how to camouflage missing eyelashes.  So check...check.

Proper Foundation

So today I met my book club friend, Allyson for lunch over by Fashion Place mall.  We always meet at Red Robin and have our specially made Cobb Salads.  It is delicious and great that she takes time to foster friendships with me.  We were right by Fashion Place mall so after we parted, I went over to Dillards.

I've been wanting to make it over to Dillards for some bras.  Two years ago, I found they carry a brand of bras I really like...and actually, they have a pretty decent clothing section.  So I wandered in and made my way to the clothes first.  They were having a big sale and it just so happens, I need a summery dress for a wedding I am going to in August.  I found about 8 dresses to try on.  After trying them all on, I settled for a cute patterned dress made of knit.  It has a cross detail at the neck, short sleeves, and was below my knees which was my criteria.  The problem is the beach ball belly.  But I had a solution, I'll get me a "proper foundation" while I am getting bras.  So I made my way down to the bra department.

I bet they have 3,000 bras there.  Luckily I knew the brand I liked and I was pretty sure my size.  I picked up 2 different sizes of body shapers to try on.  The store was hot and I started to sweat.  None of this made getting the damn bras done up in back easy.  I just could not make them do up.  So I pushed the little button in the fitting room for someone to come help me.  A few minutes later, the bra specialist came in to help me.  She hooked me up and explained that new bras are stiff and difficult to do up when they are new.  She went to get me a few more bras to see if I like them.  I thought "This is why I come here.  I want someone else searching for the right bra for me."  Well Miss Fitter was not shy.  Several times, a quick knock on the door as she barged in was the only warning I received.  Unhook the bra and out flop the girls.  I was very thankful she didn't grab them herself to place them  in the tourturous elastic, padding, and spandex contraptions better known as a bra.  I continued to sweat more.  I admit, I sent her out for one more size so I could sit down a minute.

This is when I decided to try on the body shaper.  It was a one piece body shaper.  So you pull it on like a one piece swim suit and it has a bra in it so you pull it up and put the straps on your shoulders.  I stepped in with great determination but it got to my thighs and began giving me resistance.  My arms were already tired from carrying dresses and contortion practice hooking up bras.  But I so want that dress to look smoother in my tummy region.  So I kept tugging and pulling and twisting and jumping.  Then I realized, there is no way this damn thing is going on my body.  And if I did get it on, where would all the....."stuff"....go?  Surely it would pop out the top and I just might choke on the new chin my body shaper creates when the tummy "stuff" comes out the top above my breasts.  I shiver to think what the back would look like.  Seriously.  My head would probably pop off like a ripe blueberry.  Luckily, I was able to get it off before Ms Fitter came barging in with more bras.  She asked me how the shaper was and I told her that unfortunately, it would not go over my butt.  She smiled very sweetly and said "Well you are certainly good about it."  Umm....what choice do I have? 

I did get two bras today but they were not on sale dang it.  But I needed them.  What I didn't come prepared for is the immediate realization that I am a big girl and clothes that are made for big girls are made by skinny people in a foreign country that can't even imagine how big big girls are in America.  We don't need arm holes bigger than dinner plates and if we need that big of bra, why not make sure it doesn't squish out back fat and underarm boobs?  And if we are shopping for a shaper in that size, you just might want to consider making the damn thing so a girl that needs a shaper that size can get into it!!

I'm going to do some online shopping with some companies that understand the "proper foundations" for big girl American women!!

A visit with Dr. L

Yesterday I had my first follow up with Dr. L (my oncologist) since I started radiation.  I always enjoy visiting with him.  He felt around my face and my head and neck and didn't feel anything of concern.  He also felt my arm pits (tons of lymph nodes in your arm pits) and didn't find anything.  This is good news.  We talked about the likelihood that I will get another cancer lump in the radiation field.  He said it would be slim to none that  it would come back in the radiation field.  But it will come back elsewhere.  I know that but I don't like to think about it.  It is kind of funny thinking about just waiting for it to show up again.  Hopefully it will be another 7 years!  He did say my eyebrow dent could be filled cosmetically if I wanted.  He said if cancer will come back in that area, it will push any filler out of the way.  I see Dr. S next week so we can talk about it.

We also talked about the work that is being done in St. George for cancer.  He knew all about it and said it was DNA testing that helps target treatments.  It was mostly for people with complex cancers that didn't respond to other treatments.  He felt confident I was doing the right thing and we didn't need further dissection at this point because I am doing targeted therapy and I am responding.  We are actually doing a pretty minimal treatment considering all the choices.

Then we talked about my....cardiac episode.  He pulled up the medical records on file and said he was proud that all things were good.  He explained that the CT/PET Scan they did was just of my heart area so it wasn't as helpful to him to consider it a scan we could use.  So we agreed to do another CT Scan before I see him again in October.

We talked about the Magnasphere and the supplements the Chiropractor recommended.  Dr. L seemed about as skeptical as I am but didn't think they would harm anything.  He is not sure it is going to help and we spent a little time talking about the placebo effect.  I am totally on board with Dr L's thoughts but I can't help but feel like exploring a little isn't a bad thing.  I do think I am open minded enough but smart as to really evaluate and see if they are helping.

Finally we talked about the treatments coming down the pike.  He has a patient in a clinical trial that is having amazing responses.  The treatments should be available later this year or in 2015.  That is pretty exciting news.

So on the cancer front, I have a pass card until October.

Tonight I met some friends for "Death Star Thursday".  A local Mexican restaurant has huge jungle juice drinks for cheap.  They are so strong, you can only have 2 and you must order a meal.  I actually skipped the Death Star and had a fantastic frozen margarita.  It was $1 more then a Death Star but I highly suspect it was a better choice for my liver because it is less alcohol and honestly, it tasted fantastic.  I'm really tired of not drinking socially. I just might have to loosen up a bit on my strict personal rules.  Liver....schmither.

Today I was trying to put mascara on for dinner and realized I have lost maybe 1/2 of my right eyelashes.  They are quite sparse and spikey.  Kimberlee (who I met for dinner) happens to do artificial eyelashes.  She said she would help balance out my lashes.  She has lashes that are 1:1, 1:2, and 1:3.  I don't know if it is wise to glue lashes on or not.  I wonder if they would be irritating to my burned out eye.  She is going on vacation so I have a few weeks before I could do anything so I will ponder the whole prospect.

Today is the 24th of July which is a huge deal here in Utah.  I often consider it the "Mormon Holiday" as it celebrated the Pioneers arriving in Utah.  Unfortunately, working for an East Coast company, I worked.  It sort of felt like I was being  kept after school or not able to go outside for recess.   But I made it and I will use my vacation day I would have burned having today off to do something fun another time when everyone else is working. 

A little update on Philip - he is leaving tomorrow to go on a campus tour as Arizona State University (ASU).  They seem very interested in him and can't wait to have him on campus.  His Dad is taking him.  They are doing a tour on Monday and taking time to tour around Phoenix and Tempe.  It's going to be super hot weather wise.  I do hope Philip has a great visit and it helps him learn more what the school has to offer.  It is weird to think Philip will be applying early next year.  He has narrowed down to 4 schools - U of U, ASU, NC State, and UC Berkeley.  Pretty exciting.  If I can get him to tell me about it or send me photos, I will share.

Hope everyone is doing well.  Hard to believe school starts in 1 month!!

Catching up...again

I thought I would catch you up on a few things.  Sorry for the delay.

I had my stress test last Friday.  Because I can't walk quickly/run on a treadmill, they did the whole test via a PET Scan (I am such a lucky girl!!).  It was basically like a 20 minute scan where they give you an injection of dye and to substitute for the running, they give you an injection of a drug that speeds up your heart rate.  Let's just say it wasn't the worst procedure I've ever had but it wasn't pleasant either and I really was ready to try the treadmill instead!  I did make it through okay and the great news is everything was fine.  No plugged arteries and no heart disease.  This was great news to me but I have no idea what the chest pain was last week.  I'm freaky this way but I can't wait to see what this little "chest pain" issue cost my insurance.  I'm thankful every day I have great insurance.  There is no way I could do these things without it.

I also got a few photos from the luau I went too on July 5th.  I thought you might enjoy seeing a few photos.

Many of the girls showed up with flowers in their hair (including me). 
They were making fun of us so we participated in a photo about them.

Mike and Kim - the fabulous hosts!

Thomas, Me, Julie

Me and Kim

We had lots of fun.  Although I never ventured onto the grass, I had fun visiting, having great snacks (who made that 7 layer dip!!) and yes...I drank a few Margaritas!

Over the weekend, Philip and I spent time planning a college visit for him and his Dad to Arizona State University.  They are going to tour the Tempe campus on July 28th.  They are doing the student lead campus tour, tour of the dorms, and an afternoon tour of the Honor's program.  It should be really fun.  He is also planning to visit University of California - Berkeley but their Engineering program doesn't start until September.  Maybe they can visit during UEA break in October.

I'm feeling pretty good this week.  I hurt my SI joint again.  I saw the chiropractor again on Monday.  He gave me a huge adjustment and I felt much better but I am pretty sore today.  I hope all this hocus pocus resolves soon.

So another calm and easy week.  Hope it is that way for you too!

I'm gonna be pissed if I just need to fart!

Last night, I was laying on the couch talking to my Dad.  A nice call and everything was good.  I hung up and got up.  I got a sharp pain in my left....chest/boob.  It was nothing like I've felt before.  I went to get my blood pressure machine.  Blood pressure was low for me 106/72 and my pulse was 73 which is really low for me.  I came and googled "HEART ATTACK SYMPTOMS FOR WOMEN".  I think we've all been drilled that heart attacks in women are different then men and often, the symptoms are dismissed.  I waited a few minutes and BAMM!  Again.  It was in about the middle of my left boob.  I honestly couldn't tell if it was boob or under it in my chest. I checked my blood pressure again, still low.  I googled "LOW BLOOD PRESSURE" and read there isn't really a low reading they worry about if you don't have other symptoms.  What I did now have is nausea, lack of coordination, and a slight headache.

So I made sure I had on good underpants, my underarms were shaved, grabbed my purse and book club book and headed to the Emergency room.  I didn't feel like I was having a heart attack but I couldn't deny this terrible pain in my chest area.  So I drove myself.  It felt weird pulling up to the ER and walking in alone.  They were quick to check me in and started an EKG immediately.   I had another pain. Then they moved me to a small room.  I was given baby aspirin, Nitro Glycerin, and some cocktail that numbed my esophagus and stomach.  They also put in an IV and drew about 6 tubes of blood.  They took me for a chest Xray.  Then I laid there...waiting.  It wasn't long before a woman came in to finish my registration and collected my $150 co-pay.  (ouch)

I was so glad I grabbed my book club book.  I hadn't even started it and book club is tomorrow!  I got started and luckily it was an easy read.  It made the time go by quickly and kept me from getting too stressed.  They came in after about an hour and told me the labs were normal but they wanted to pull more as they need to check it 2 hours from the first draw.  No problem.

When the second lab came back normal, the doctor gave me a choice to stay for the standard protocol and have one more lab pulled or to go home and keep my fingers crossed.  He explained the lab is checking for clots.  The fact that I didn't have any clots after 4 hours was a good sign but to be thorough, I could stay for one more.  I decided to do that. What is 2 more hours at midnight?  So I kept reading my book.  It was tough to concentrate because there was a baby crying like crazy for about 45 minutes in another room.  But I made it.  Everything was normal again so they discharged me with firm instructions that I need a stress test on Friday morning and if I have any more pain, to come back immediately.  He also mentioned my chest Xray was clear and there were no tumors seen. That wasn't even on my radar!  I walked back out of the ER at almost 2:00 am.  No water...no snacks....no dinner.

On the gurney for 6 hours.

They don't know what is causing the chest pain.  Just because everything was normal, they were not checking for heart diseases and I need to continue to pursue that.  I know with almost 5 years of Prednisone, I am at risk for heart problems.  Also Myositis is a muscle disease and alas your heart is a muscle so that could be a big risk too.  At least I didn't have a Heart Attack.  Although I felt really stupid for going in, I think it was necessary and good to rule that out.  I should not feel disappointed it wasn't a heart attack.

So things are okay.  No answers for the pain.  I'll continue to get tested and figure out what might be wrong...if anything. 

Ever since I was a teen, I've always joked that I would never be the one that goes to the ER with chest pain that turns out to just be gas!  I don't know that was my issue but I do believe it is always better "out than in" when it comes to gas!

The door project

A few weeks ago, I woke up with another epiphany.  Luckily, this one was about my front door (not a cruise).  I wanted to paint it jade/turquoise/teal.  I wasn't sure if that was the drug induced decision so I waited on it.  Every time I drive down the road, I crept past the house trying to visualize the front door.  All I knew, is I needed to give the front door a new coat of paint.  It had been years since I painted it that real pretty deep red.

As I mentioned earlier today, I went and got the supplies last night and spent until 12:30 am prepping the door.  Today was paint day.

This is the door prepped.  Let me preface by saying I am pretty sure this wooden door is
original to the house.  When I bought the house, it had these funny
 wooden spindles in the center window.  It also had 1950s molden glass. 
It was broken.  I cut the spindles off when I painted it red. 
I had the glass replaced when I got my windows done several years ago.  The white is putty.

Because  I was covering red,  I had to do a coat of primer. 
Another successful job with Kilz.  My entire house
was painted with Kilz due to the prior owner's smoking.

This is the finished door.  It looks medium blue in the photo
 but it is more turquoise.  The color is called Exotic Sea.  I like it....I think.



I sometimes get asked how I do all these jobs with my illness.  The truth is.....slowly.  I've learned how to adapt to some degree.  I never stand long and I try really hard to not get on the floor because it is tough to get up.  Bending over really hurts my back.  So I use chairs and a table to hold my stuff.  I sit on the chair for most the work until the bottom.  Then I have to stand and bend over for that part.  I learned the hard way to put down plastic because sometimes things fling out of my hand.  I also use paint pads instead of paint brushes.  Not only are they easy to clean, they are easier to hold and control.  And I spread out the work.  One of the reasons I prepped and sanded last night is I knew I couldn't do that and paint today.  My arms get really tired.  So I was able to rest my arms over night and paint today.  Then I take breaks between each step.  Wash the door...then rest....tape the door...then rest.....get the supplies on the folding table...then rest.....paint the primer....rest.  You get the idea.  Takes me forever to get stuff done but it helps me get it done and that is what it is all about.

 

My set up.  Plastic, swivel stool, table with
 supplies.  This is how I roll.

I got done in time to put my dinner together and then see the fireworks from my back patio.  I'm pretty sure my body sent signals far and wide to every bug out there to come bite me.  I had my Off clip on but I am not sure I got out clean.  We will see.

Not sure the iPhone is made for night time fireworks photos but you get the idea.

Okay.  My arms are tired and my legs are shaky so I am going to hit the sheets and see how I feel tomorrow.  I do have enough paint to paint the back door (it hasn't been painted since I moved in) but that will be for another weekend.

UPDATE:

Here is a photo I took this afternoon in the natural light.

4th of July - and my humorous observations

Happy 4th of July!  I can't help but be happy about being an American and enjoying the freedoms we all experience.  For some reason, the 4th of July is one of those annual markers that makes me so happy for the body I have and it's willingness to fight for me.  Plus I absolutely love fireworks.  I suppose it comes from spending time on Paxton Avenue with my Grandma and Grandpa.  We would BBQ in the back yard.  We were always excited when our Aunt DeOna and Uncle Randy would show up with their boys, David and Ryan.  They lived close enough to the ball park that we would always sit on the front lawn and watch the fireworks.  DeOna and Randy used to bring fireworks to light in the street.  If memory serves, it usually was fireworks bought in Evanston.  Made it always feel so rebellious and dangerous.  Firecrackers are illegal in Utah but they give them away like candy in Wyoming.  Randy would always have those.  For some reason, we would always leave as quick as we could to "avoid traffic".  If we were fast enough, we often were on the freeway somewhere by Lagoon so we could see their fireworks as we drive down the freeway.  Even to this day, I get so excited for the finale!

 

Today I find myself alone.  So totally fine with me.  I decided to work on a project.  So I got some paint last night and sanded and prepped my door at 10:30 last night!  Today I am spending the day painting and making it a beautiful teal/aqua color.  I love the red it was but it is time for something new.  I went to the grocery store and picked up stuff for a BBQ for one.  I'm looking forward to it.  Tomorrow, I am going to a big party at my friend's  house.

I've got a few funny thoughts running through my head today that I thought I would share.

So last night I ran into Lowe's at 9:40  pm to pick up my paint supplies.  I didn't realize they were open until 10:00 but I learned they were and headed in quick.  I came up to the paint area at a quick pace and found it empty....clean....no one around.  I already knew the color I wanted so I stood there waiting for someone...anyone to help me.  NOTHING.  Finally I asked the people at the customer service desk if I could get some paint.  They said they would be over in a moment.  10 minutes later of pacing and the clerk came over to mix my paint.  I ran around getting a drop cloth, sand paper, putty, paint sponges, etc.  At 9:58, I was paid and out the door.  I couldn't help but think what that looked like from the clerks point of view.  And I am sure they were very disappointed to have to mix paint after they already cleaned up the area.  Like who really buys paint at 9:50 pm?  Especially like their ass is on fire.  Haha.

I'm embracing being older but come on.  Today I went grocery shopping.  Seriously I don't think I've been in the store for a month because Philip has been doing my shopping.  Today I came out and was loading the car with my items.  I admit, my body is always tired as I leave the store.  And I had 4 mega packs of soda, a watermelon, cat litter, and cat food.  A guy came up and asked if he could hold my cart while I filled up my trunk.  I said I was fine but thank you.  He said he was anyway and would take my cart when I was done.  You know, that is super sweet...but the guy was elderly and couldn't stand upright himself.  While I appreciated his courtesy, I found it ironic this elderly guy was helping me. Way to go Grandpa!

For some reason, I always watch the 4th of July hot dog eating contest on TV.  But it is so damn gross, I can barely watch.  Today they had a pre-event discussion and demo of what happens to your stomach when you eat 69 hot dogs in 10 minutes.  I will just say, it wasn't pretty.  I'm questioning my menu of hot dogs tonight.  Hopefully the sights I saw will go away...but I fear that is something that can't be unseen.

My street is usually very festive on the 4th.  I always count on the neighbors across the street to entertain me while he entertains his family.  Last night, I hurried and hung my flag out at 12:30 am since I planned to sleep in.  I wanted to be sure to show my patriotic ways before noon.  When I finally rolled out of bed, I wanted to see what was going on up and down the street.  It appears I  missed the memo because I think I am the ONLY one home today.  Was there a weekend pow wow I didn't know about?  Sounds like it will be a quiet day.  That is okay, I can work stealth today.  Maybe I'll go ahead and paint the door in my underpants.  That way, I don't have to worry about getting paint on my clothes.

Whatever you are up to today, I hope you enjoy your 4th of July safely and with even just a moment of appreciation for this wonderful country we live in.

Following up with Dr. C

Today was my first follow up appointment with Dr. C (the radiology oncologist).  Let me say, I think I finally have him trained.  He came in with a fun spirit and a huge smile.  He commented that he usually has to look at scans or Xrays to know how the patient is doing but since mine is smack on my face, he just has to look at  me.  Haha.  Yeah.  I'm so lucky that way!

He felt around and didn't find anything he was concerned about.  He did acknowledge the thicker areas but didn't think it was a concern.  I agree there are no bebes or other things that my cancer has presented in the past.  We talked about the dry eye.  He said that sometimes that resolves over time (like maybe a year) and if I find I don't need the LacraLube (nighttime ointment) or the daytime drops, that is fine but for now, it is probably good to use.

We talked about the cataract. He said he has no problem owning his own side effects but he felt there was no way the cataract was already from the radiation.   He said he never sees cataracts for 2-3  years.  I reminded him about the years of Prednisone and we agreed that was  probably the culprit.   Maybe it won't grow since I am not on Prednisone anymore.

He said I am okay to color the brows but he would prefer if I don't wax them for a few more months.  He said that the plucking hurt because the skin isn't healed yet.  So if I have to do it, go ahead but he thinks there is no reason to irritate the area for a few more months with waxing.

We talked about the "zit".  In true Dr. C fashion, he was himhaw about it and said we should keep and eye on it.  Because it hadn't gone away in a  few weeks, it seems unlikely it is a zit but we agreed to call it that for now.  He wouldn't tell me what he thought it could be if it wasn't a zit.  He did say he is an Oncologist so he has lots of worries that he doesn't think I need to worry about it now.

As I was walking out with him, he said  he was very happy my skin held up so well.  He finally admitted he was concerned how  my skin would react with the Polymyositis and if I would have problems with the Methotrexate.  Funny, we never spoke that before or during.  But I admitted to him I had the same concern going into it.  We laughed and said we were glad it was a non-issue.  It is just so fun having a super rare disease that people don't know the answers to these questions.  It is like being a medical pioneer!

After I met with him, Michelle (the radiology tech that helped me most days) came out to see me.  She gave me that same big warm hug from before.  She was glad to see me and glad I was doing well.  It was great to see her too. She really is a special person that did everything she could to make something so scary and horrible...okay.  I can't help but feel that office saved my life and my vision.   Not to mention the vanity factor with cancer tumors in my face.

My skin is a little freckled.  The eyebrow a little worn.  But unless I pointed it out, most wouldn't realize what that poor dang eye has been through.

I don't go back for a follow up with Dr. C for 3 months.  That is October folks.....Fall...after summer. I like that.

Photos below....

Just kidding.  This is from my birthday.  After several shots
of tequila, I got silly.  I thought I could put a mustache
on my eyebrow to camouflage it.  I guess it won't work!

Brow today with bang cover up.  This is how I look
when I go out with minimal make up.  I'm proud you can't tell.

Lifting the bang "veil".  In the photo, you can't really tell there is a dent. 
It is a little more obvious in person.  So glad I have a brow and lashes.