Thoughts for Chuck and Mom today

Today is a big day.  Chuck, my step dad, is having open heart surgery this morning.  A heart bypass surgery.  Both Mom and Chuck were very optimistic about the surgery.  I am as well.  But I can't help but feel anxious about it.  It is a big surgery.  So my thoughts are with them today.

I just received note that he is out of surgery and all went well.  That is good news!  Love you both.

 

Guess who is 18!

Today is Philip's 18th birthday!  It is amazing to me to think about my little baby boy is now 18 and considered an "adult".  As a Mom, it is hard to think about our kids growing up and becoming their own self.  But since the day I was inducted in the world of motherhood, I have enjoyed each phase Philip went through.  He has never failed to make me proud.  I am amazed by Philip's sense of humor, caring nature, and intelligence.  I am amazed I have raised such an amazing kid.

In my house, on your birthday, you get to go out to dinner anywhere you want.  Philip picked Flemings.  I love Flemings too so no problem there.  Since it is a big birthday, I decided to invite Ryan to join us.  It should be fun.  We also went out to dinner with Dad's side of the family which was great fun.

Happy Birthday Philip!

Here is a flashback!



Dinner with Grandpa, Cindy, DeOna, and Randy

DeOna and Randy

Dad, Cindy, and Philip

And you are NOT it......

I got selected to do jury duty.  And I had to report to the West Jordan Court House bright and early Tuesday morning after the long MLK holiday.  I got up earlier then I prefer and got all ready and headed out to the court house.  I was a little early (8:15) but it warned to NOT BE LATE.  I was handed a 4 page questionnaire. 

As I filled it out (it was about malpractice and large lumps of sum awards) the questionnaire, I watched lots and lots of people file in.  There were 70 of us called in but only 64 showed up.  Seriously.  Packed into a small jury duty holding room.  Eventually we were called to line up in the hall in a particular order.  Once lined up, we were lead into the courtroom.  There were about 25 attorneys and other various members of the legal team combined.  We were squished on benches and seats really tight together.  They had us introduce ourselves to everyone and had a sheet of "get to  know you" questions we had to answer to the entire room.  Then we sat.  And sat.  Then we were slowly called one by one to the judges quarters to be further questioned. 

On my questionnaire, I wrote that I don't know if I could be unbiased in a malpractice lawsuit.  This obviously caused and issue for the legal teams.  So they quizzed me.  I explained that I don't really believe in malpractice lawsuits unless there is an extreme circumstances.  That I had some serious medical conditions and it has NEVER occurred to  me to sue my doctors.  They pushed farther and I said a malpractice lawsuit might make sense if they amputate the wrong arm or give you 100 times a normal dose of the wrong medication but otherwise, we need to understand doctors are human.  I was asked if I was already biased towards doctors.  After a long pause, I said I guessed I was because I feel doctors are doing the best they can.  They thanked me and sent me back to my tight little bench seat. 

At 12:15, I asked if we were going to be excused for a lunch break.  The baliff brought in a bowl of vending machine snacks (chips, cookies, etc) at 12:45.  There wasn't a damn thing in the bowl that fit my diet.  He said they hope to have a jury selected soon.  At 1:30, they filled the bowl again.  They were still interviewing the 65 of us they wanted to see.  At 2:15, they came and got the bowl.  We still had been locked in the court room staring at each other and trying to be amused.  But I admit, I had lost it by then.  I bought my knitting but the seats were so tight, I couldn't knit.  By 2:15, I had my head on my hand on my purse in my lap.  My back hurt from all those hours sitting on that hard bench and my head was swimming from lack of food.

At 2:30, the lawyers all came back in.  And the judge explained that they were ready to do jury selection.  They needed 10 people out of all of us and the case would be taking 9 days.  And then the lawyers started staring at us and pointing and passing a paper back and forth regarding who they wanted in and who they wanted out.  I can read upside down and I could see a big pink sticky note over my name.  Is that in or out??? Finally at 3:00, they called 10 names.   And I was skipped.  Thank god.

I truly can't believe they made us go from 8:30 - 3:00 without lunch?  I would have been fascinated with the case and I have no idea what the situation was.  I stared at the woman plantiff for hours.  She was a sweet older woman.  She sat there for hours with a very straight face.  I can only imagine how long she waited for her day in court.  She had 4 attorneys but the doctor and hospital had 20.  That seems really unbalanced.  I hope the case goes well and the right result comes out of it. 

I am very thankful I have a strong opinion and wasn't going to have to spend until next Friday in court deciding the future of this poor woman and her family or the doctors and hospital.  How do you pick?  For once I was really glad to be an "odd man out".  I skipped out of there and immediately stopped for food on my way home.  Unfortunately,  it threw me so out of whack, I'm struggling with my diet.  I did eat sugar and I'm very sad about it....because it tasted really good.  But I am sure I will get back on track in the next day or so.

Running away...to warmer places full of love

The weather has been completely dismal in Salt Lake.  We have a terrible inversion and I can feel it in my lungs.  I was watching the weather the other day and seeing how we will be socked in for at least another week yet St. George was sunny and in the 60s.  So on a whim, I decided to make plans to head to St. George for a quick visit for the long weekend.  I also decided to invite Mars and John to join  me and they agreed.

So Saturday morning, we got up super early and headed out.  I like driving early in the morning.  It is beautiful watching the sun come up and the dew on the fields.  Plus we get there in time  to visit with Grandma and have lunch with her.  It was a lovely drive and we made it down in record time.

Grandma was really excited to have us visit.  She looks great.  You would never guess she is 98!!  In fact, John asked her if she could believe she was 98 and she paused a moment and said "Are you sure it isn't 78?"  I got quite a giggle out of that.  She still has a tough time hearing but she was working really hard to communicate.  She was more involved then I've seen her in a long time.  She came up with questions and really listened to everything we were talking about.  It totally warmed my heart to see her so.

I decided to so a Selfie with everyone and I can honestly say
 this is one of my favorite photos.  Grandma didn't quite understand
the concept but that makes it even more awesome!

In the evening, Chuck and Mom has made a really yummy pork roast dinner complete with mashed cauliflower and pie.  It was delicious.  Then we went to a movie.  Mom and I went to see the Steven Hawking movie.  It was a pleasant surprise.  I find myself still thinking about it and that is a good thing.  Driving to the movie, we had the most spectacular sunset.  I was in complete marvel over it.

I had a chance to check out the new Best Western hotel in La Verkin.  It was actually super cheap ($60) and included a nice room that was brand new, access to the pool and hot tub, gym, and a full breakfast.  Because it was new, it smelled good and it was quite clean.  I am so happy there is a hotel close by that is decent and a good price!!

Sunday, we met up to visit Grandma again before she went to lunch.  Then we went up to Zions to have lunch at Oscars.  Oscars is one of my favorite places to eat.  We sat on the patio and it was absolutely beautiful.  We got to absorb the sunshine and appreciate the beauty of the mountains and blue sky.  And I got to enjoy a great layered chicken enchilada.

Loving the sunshine!

My beautiful Aunt Mars

Seriously.  It is just too much!  It is so beautiful!

We had a great drive home and made it in time for Downton Abby.  It was a super fast trip but boy did it feel my entire heart and soul.  I really do love my family!

No White eating

As you know, I've been told to avoid all simple sugars and avoid "white food" (potatoes, rice, pasta, bread).  I'm happy to report, it has been 6 days and I am still sticking to it.  It has been difficult.  I am also counting calories but mostly focused on eating the right food instead of how many calories is in it.  Dr. CS was clear it was "what I eat" that will make the difference versus just counting calories.

One thing I came up with was a copy cat of a sandwich I had in Baltimore.  I'm liking it so much, I am starting to crave it.  It meets several levels of taste requirements.  Yes it is bread but it is Rye bread....which is better for you (and not white).  Another trick I've started doing is eating all the yummy on 1/2 sandwich instead of a full sandwich.  Stack it deep and "sell it cheap"...in calories and carbs. Here is my lunch today.  It is Rye, garlic hummus, spinach, tomato, and apple.  I went ahead sliced up the left over tomato and apple for my sides.  Serious try it.  It is amazing the way the flavors meet your palate.  Even Philip loves it.

I have done a great job sticking to my goal (except for dinner out on Tuesday where I ate white rice).   But the lack of sugar is tough.  I will shyly admit I am a candy-o-holic.  I ate candy every day.  And I have not found a way to get over that.  If I was just counting calories, I could fit in a small bite but I am trying to not have any sugar so any tidbits are out.  Basically I just walk around wishing I had some candy in my mouth.  I'm hoping the habit over rides soon.  They say 21 days to make a habit.  I'll give it a month and see if it disappears or at least reduces.

I would love to weigh myself but my home scales are not even close to what the doctor's office has.  I think I am making headway but I hate to report any change until I've checked a better scale.  And I've not hit the gym yet.  It is all I can do to start with the diet.  Next week I will hopefully add the gym.

As far as the lack of Methotrexate, I've not felt any different strength wise.  But I am really working to get used to not having the side effects.  The foot cramps...none.  Fatigue....reduced.  Chemo brain....reduced.  Funny tasting food....none.  It was way fun to be able to go do something 7 days a week instead of 5.5 days.  It is all taking some time to adjust.  I have to change the way I think.  But I guess 321 weeks of getting used to being on it will take some time to get used to not having it.  I hope I can stay off.

I did check with my Neuro, Dr. D.  She was fine with sticking with my appointment on 3/30.  So free float continues!

If you find me in the corner, sitting on my hands, a dazed look on my face, and drool running down my chin...DO NOT FEED ME CANDY....no matter how much I beg.  Remind me of my goal and how happy I will be when I kick the sugar habit and feel better.

Day 1 - no Methotrexate

So last night is the first time in 321 weeks that I have not taken my weekly Methotrexate shot.  I won't lie.  It feels weird.  I am fairly scared that my disease will run rampant and I don't have a doctor's appointment for 2 months.  I haven't heard from Dr. Duvernay if she even heard from Hopkins yet.  So I am feeling like I am going a little commando here.

I can't help but be excited about how good I could feel without a weekly dose of toxins in my body.  I frankly don't remember how it feels without weekly chemotherapy weighing me down and making me feel sick all the time.  This could literally be life changing.....good or bad.

I've also started my "no white" diet.  Do you know  Fresh Market doesn't have much bread variety outside of wheat and white?  But I did find a New York Rye bread.  I'm going to have to expand  my shopping radius to find more variety in foods.  I was told Whole Foods has great choices.  In addition to changing my food choices, I decided to start tracking calories on MyFitnessPal again.  It says I get 1300 calories.  The nice thing is it has a ton of resources and it makes choices and tracking while eating out easier because a lot of it is already in there.  For the last 2 days, I'm tracking and watching.  So far so good and I haven't felt starving although I am noticing I am eating less...and that is the goal.  Less and better choices.

So after 321 days, I have an extra day in  my week to do stuff.  Today I am taking down Christmas....finally.

Notes from Baltimore - Johns Hopkins

I have  so much to write about, I decided to break apart our Baltimore notes from the Johns Hopkins notes.  So Thursday, I had my appointment at 8:00 am but were told I must be there by 7:30.  So we got ready and caught a cab at the hotel.  We ended up getting there a little early....7:20.  In fact, they weren't even open yet but the person let us in and let us sit inside....which is nice because....9 degrees.

I got checked in and waited until I got called back. About 8:15, they called and back I went.  They wanted to watch me walk and check my vitals while I walked.  Then I went to a room to give a resident student my history.  They had all my records I submitted to get an appointment.  He said there wasn't much...only 40 pages!  And I gave him my new stuff...all my records since October.  Additional records I found after I mailed in the first set.  CDs of my recent scans.  And lab results.  We went through my whole health history and my history with my myositis.  The resident was very nice and was friendly to talk too.  He then had me put on a gown so he could do some testing.  No pins which was nice but lots of "pull and push...push...push"...no Alexis...really try.  (I was.) He noted some significant weakness which wasn't a surprise to me.  He did have me walk on my toes the best I could and my heels.  Up and out of a seat without hands.  Then I waited a few minutes for Dr. Christopher-Stine.  It was about 9:40.

Dr. Christopher (that is what the team called her) came in and had already gone through all my records.  She remembered me from the conference and we hit the road running.  Here is a recount of what she recommends.

1.  Lose weight.  A lot of weight.  It will take a year or more.  I expressed my frustration with weight loss and not being able to lose any.  She said the trick is no "white".  No bread, rice, potatoes.  Mix in greens and high proteins.  It will be hard but it will be worth it.  I will be more mobile if I get off the weight.  She said this is the single biggest thing I can do to feel and move better.

2.  Exercise - She recommended PT but with someone who specializes in Myositis (good luck).  She wants a weekly strength test called MMT8.  I have not had any success finding a PT that knows Myositis although when I was at the Neuro PT center, it was close.  I am actually going to go back to the gym to start and see if I can make some headway.

3.  Stop Methotrexate - She didn't feel it is helping me at all.  She said she rarely sees people on it as  long as me.  I've been taking it since November 2008.  She said to stop it cold turkey is fine and it will take 1-2 months to get it out of my system and see how I do.  She really didn't make any suggestions what we would do if it doesn't turn out well.  She is that confident it won't matter.  This is huge to me because Methotrexate is a chemotherapy drug and has all the side effects of chemotherapy but because I take a smaller dose, it isn't as pronounced.  It suppresses my immune system, thins  my hair, ruins my liver and kidneys (so I can't drink alcohol), and makes me sun sensitive.  Not to mention the fatigue and change to taste buds.

4.  Check CK monthly - this is the blood work I have each month to check my muscle injury.  She wants me to keep having this done.

5.  Come back in 6 months - She would like to see me in 6 months.  I agreed I would.  I am coordinating that now.  Hopefully I can time it with a graduation trip with Philip to DC.

6.  Get a myositis panel lab -  I've tried to get this done here but no one knows what it is.  So went ahead and had it done there.  It is sent off to a special lab in Oklahoma.  I won't have results for 3-4 months.

7.  She felt my diagnosis was correct but she called it Atrophy Polymyositis.  She said the disease appears to have "burned out".  Not  sure what exactly that means but she said it isn't active.  On further testing, she did say it is suspect I have Inclusional Body Myositis (IBM) but she wants to see my myositis panel before exploring that further.  IBM sucks.  There is no treatment for it.  But knowing would be good instead of wondering why I don't feel good.  She did not feel I had MD.  That is a relief.

More on the atrophy - she said my MRI showed I had significant atrophy in my thigh muscles.  This means the muscle is dead.  You cannot revive an atrophy muscle but you can build the surrounding muscle.  So that is my goal.  I probably won't get significantly better but keeping what I have and not lose more is important.  She did say I didn't do anything to cause the atrophy.  It is part of the disease.  So even if I exercised regularly, I would have still had atrophy (I can let go of the guilt now).

It was a really good visit.  I feel so incredibly lucky to have the chance to go to the Myositis center and see Dr. Christopher.  She really is a passionate doctor looking to make life better for us Myositis people.

A really funny ditty.....

When our cab driver dropped us off at the Hopkins building,  I asked if he had a card so we could call for a return cab.  He said to just have the facility call us a cab....until I paid him.  I admit I gave him a $9 tip but he dropped us off at the back entrance right by the door and out of the snow and ice.  Because I gave him a big tip, he said "Wait a minute.  Maybe I will give you my number for a return ride."  HAHAHAHA.  So we did call him and he did come get us without delay.  To me, that is money well spent. There were no other cabs around.

This is the magic spot.  4 months in the works to get to come here.

It was cold.  So so cold.  This is the best I could do.

Outside the Myositis clinic.

Notes from the Baltimore trip - All about Baltimore.

I am home from our quick trip to Baltimore.  I have to say the trip was fairly easy and things went just as planned.  Baltimore is a funny city.  It reminded me a lot of Minneapolis.  Maybe because it was just flat cold.  Really cold....16 degrees at 3:00 in the afternoon.  And there were several old "factory" type places as well as modern city development.  We really didn't plan to do much besides the visit to the Myositis center.  I wasn't sure how long it would take and we knew it would be winter weather.

I booked a room using Priceline and got a reservation at the Marriott Waterfront right in downtown Baltimore.  It is just a few miles from the hospital.  When we checked in, I mentioned we would love a room that looks over the water because we were planning to spent significant time in the hotel.  We were pleased when we got to room and realized we had a corner room that looked over the water and the city.

Sunset view from the room over the waterfront.

Baltimore

The first night there, we got settled into our room and decided to make it simple and eat at the hotel.  They had one restaurant.  They had a sort of strange  menu.  We did order the Maryland Blue Crab dip to be regional.  I curse Nola for teaching me crab dip is good.  Mom wasn't very hungry so she had a bowl of crab chowder too.  I had soup and a salad.  Mine was weird.  The soup was a white bean, kale, and chicken sausage soup.  It was very spicy.  The salad was advertised as a carrot salad but it was really just  frisée lettuce with a few carrots, radishes and a vinaigrette.  I am pretty sure most everyone has had frisee lettuce in their life.  It is the one that is super bitter and spicy like pepper.  At first I thought it was delicious but the after bite was significant and I soon decided I couldn't eat anymore.

Baltimore Blue Crab dip with pretzel bread

When we got back from the hospital, we were ready for lunch.  We went back to the restaurant and I was a little nervous what I would find to eat. But they had a delicious lunch special with a bowl of soup, salad, and a 1/2 sandwich.  I got squash soup, ceasar salad, and a veggie sandwich.  The sandwich was so interesting.  It was pumpernickel bread with hummus, lettuce, tomato, green apple, and hard white cheese.  It was interesting enough, I am going to try to make one at home. The flavors together were really good.

For dinner, we decided to spoil ourselves and go to Flemings that was next door.  Mom had never been to Flemings so it was fun to experience it with her.  The weird thing is we went a little early...6:00 which is super early for dinner on the East Coast.  So we were one of just a few tables. 

Between chowing, we decided to watch movies in our room.  I was wanting to rest lots to help continue to get over my cold and I was pretty sure I would be tired  physically...which I was.  We watching 3 movies and it was very fun.  Gone Girl?  OMG!  We watched St. Vincent too.  That was a very pleasant surprise.  And we watched Alexander no good very bad day (or something like it) and it was pretty cute.

This morning, we got up at 3:30 to get ready to head to the airport and catch our flight.  We weren't sure how tough it would be to get a cab, through security, and to the gate so we left some time.  We ended up having lots of time.  And frankly, I've been a zombie since we got up.  That is just too early for me!

We had a great trip.  I kind of giggled when we checked in because there was a towel animal in our bathroom.  Since this is my "financial adventure" of the year, I thought it was a great addition since there is probably not a cruise in my near or far future.  (Cruises usually have towel animals each night.)  I'm so appreciative of Mom coming with me.  Thank you Mom.

Getting ready

Since New Year's Eve, I've been still working on recovering from this cold.  Today I finally feel like I might win the battle although I am still congested.  I am also back to work.  As I suspected, I totally flipped my sleep/wake schedule while I was off.  I got quite used to sleeping until 10 or 11:00 every morning and staying up until 1 or 2:00 in the morning.  So it is brutal getting up and working by 7:30....not to mention making lunch for Philip each morning.

But what is really on my mind is getting ready for my trip tomorrow.  I have quite the stack of medical records and paperwork.  I was getting pretty anxious about going through it and making sure I have everything I need so Johns Hopkins will check me in.  But I also wanted to organize all my records and put tabs on the important stuff so I could find it easily.  But last night, I got it all organized, copied, and ready to go.

The next step is to make a list of my questions.  I hope to work on that later today.  I also need to finish laundry and pack.

I won't lie.  I am nervous.  Very nervous. I suppose it is the fear of what they might say...what I might learn.  Nola reminded me that I need to stay focused on how important it is to learn more so I know what I am dealing with.  Maybe they will even have ideas that will make me feel significantly better.  I will try to keep my eye on "the prize".

I'm not traveling with my laptop so I am not sure I will blog about it until I get home.  But I will be home Friday and will check in once home.

Wish me luck.......