My Mary Poppins Bag and more

Kevin keeps calling my purse "mary poppin's bag" and I don't think he has seen anything yet. As today was the first day of classes for the fall semester my bag looked extra full!

It contained :

*Anatomy lab manual

* 3 class folders

*flash cards

*wallet

*seltzer - can't go anywhere without it

*enough food for the WHOLE day, sandwich, kale chips, granola and a little treat!

*my day planner

*notebook

*pencil case

Let's wait and see what happens once work starts up next week and that gets thrown into the mix! I think I may need a bigger bag...maybe a nice messenger bag for riding my bike around town between nannying and going to class.

As of friday I am back on the cancer fighting medicine and only had one minor side effect on saturday- lets just say it was bathroom related ;) . I am so interested to see what my lab results will show this week. As of the past few weeks before the medicine my red levels were still rising and very very close to normal and so were my whites ! Let's hope this lower dosage doesn't mess with any of my levels.

ps. go check out my Light the Night page and see the amazing progress! I cannot believe that we have had to raise our goals twice already. We are hoping to meet our new goal of $3000 !!! Thank you thank you to all of those who have donated I am absolutely overwhelmed with the love and support.

La Sagrada Familiia

Here are some pictures of the most amazing church that I have been to and I have been to  A LOT of churches. We visited the church on our 2nd day in Barcelona and saw the inside and outside as well as the museum. We also saw the church on our amazing bike tour around the city!

*major travel tip book your ticket to see the la sagrada familia at least a day in advance and you will avoid ANY lines otherwise you can wait in the longest line I have ever seen which could be an easy 3 hour wait YUCK! but the tickets assign you a time frame and you skip the line and walk right into the magnificent church

This church is absolutely breath taking and it boggles my mind that it has been under construction for so long and still has years and years to go. 

Curly Hair

I think I may have found the best side effect ever, and I hope it never ever ever ever (i'm really passionate about this one) goes away.

my hair is starting to have an every so slight curl in it. WHAT. Yes, you heard me...errr read that correctly. After I take a shower I always air dry my hair. For the past 25 years of my life my hair has been straight no matter how much I would try to curl it and hairspray it so ferociously that it would be crispy.  That however has all changed after air drying my hair last night it had a few luscious gorgeous tiny waves in it.

I am basically freaking out over here because I have wanted some sort of movement to my hair since forever and a half ago. So I only wonder if it is due to the Revlimid or maybe because I am missing a part of my chromosome. I don't care what is causing this change to my hair its welcome to stay forever.

I mean with all that said it is as straight as a line the instant I put a brush through it...

Now I think the side effects need to stop coming and I would be happy! Curly Hair and Happy.

I am on my 2nd week of no medication as my white blood cells are still low. They are making their way up to the normal range but just nice and slow.  My red blood cells are going crazy and are continuing to get closer to the normal range even though I haven't been taking the medicine. WOOT WOOT. Lastly, my platelets dropped a little. Let's just hope all my fighters keep doing their job and go in the right direction to make me 100% for my trip to Barcelona in 10 days!

and in 5 days I get to reunite with my man!!!

Yeah for no more FaceTime!!

oh and I get to reunite with all my glorious wonderful, supportive amigos 

Side affects...

So I have started to feel a few of the side affects of this wonderful, horribly toxic medicine that I am on. Lets just say that I have become very close with my bathroom at home and maybe a few other bathrooms around the city...when you got to go, you just got to go. Luckily it is not everyday or all the time and only happens oh you know just RANDOMLY. It has made for a few interesting stops.. OK enough of this one side affect...

I have also noticed that if I go for a long walk in the heat. When we went to Brazos State Park and last weekend around rice both my hands become insanely swollen and itchy. My mom says that just comes with age and because I have an old persons disease...my body must think that is 70. pshhhh I definitely think it is a crazy side affect and it better stop because I do not want to have swollen hands walking around Barcelona in two weeks, that would be very un-glamourous.

The last side effect we found out during the check up. My White blood cell (WBC) count has dropped  and unfortunately that is to be expected when starting on revlimid. It has although brought my RBC count up to about 10 which is the highest it has been in at least 3 months!! WOOHOO. But because my  WBC's are below what my Dr wants to see I have stopped taking the medicine until they are back up in the normal range. Which cross your fingers, knock on wood come back up by next week and things are all good for my trip to Barcelona in two weeks. I can just see myself now being that weird-o on the plane sitting there with one of those medical mask things, ugh. So un-cute!!  

Anyway onto something pretty awesome. My mom's gym, Washington Gym, put together a little pot-luck lunch get together and had a women from a Bone Marrow Donor Program come so people could sign up to be donors! It was absolutely incredible I can't thank them enough for holding the Bone Marrow Drive. 

Also my wonderful man sent me an awesome care package with a puzzle, flowers and a few books from his mama!  I am a total puzzle nerd and the puzzle he sent me got my puzzle mojo flowing and I've made huge gains on my 2,000 pieces puzzle

Aren't those flowers gorgeous?


ps. Any suggestions about things to see, do and places to eat in Barcelona are welcome!!

My Man

This time last year I met the most amazing Guy ever. (yuck puck...am I seriously this silly over him?) Here is a little post to show my appreciation for him. He is the kindest person I know and is just so much fun to be around. Here are some of my favorite photos of us.

1. A night out!

2.New Years in Atlantic City

3. Christmas Lights at Longwood Gardens

4. Cherry Blossoms in DC

5. Houston Rodeo!!

6 & 7 cute pictures of my man

8. Probably my favorite photo of us :)

Thank you for being so strong for me and helping me through all of this. You are always there for me to talk to, bounce ideas off of, go on adventures and even cry too (even though I hate to admit that I cry). You like me for who I am and make me want to be the best me I can be. I am so glad I met you at a bar a year ago today.   Here's to many more!!! Love you

Friends Friends Friends

Wow I love my friends. They are amazing. This past weekend two of my good friends from Philadelphia came down to hang out with me! How awesome? I mean seriously, it was great we had such a fun time. I wish they could have stayed a lot longer but alas they have to go back to work, boo!

I am in awe of how great my friends are. I have received countless cards and well wishes; to keep staying positive and fighting the strong fight.  You all make a girl feel so loved! Also a huge thanks to all of you who read this and give this blog a purpose, and I'm not just writing for nothing!

This weekend was crazy busy (for me at least). We toured around Houston and did a lot more than I usually do on a regular day down here and I am happy to say that I could keep up and not have that crazy tired feeling until the very end of the day.

Saturday we ran around Houston, went to the beautiful Craft Museum, the Menil Museum, and then to the Houston Gay Pride Parade. We had plans to go out afterwards around midtown (I found young people in Houston!!) but after a 107 degree day, we were exhausted!!

The Gay Pride Parade was amazing! Sooooo much glitter and beads.  There was also a lot of bare skin and interesting sites, but that comes with every pride parade...right?

We left a little early as we were pretty much melting even though it was almost 10 at night. As we were driving home we decided BBQ would be a good dinner choice and made it to Jim Goode's with 3 minutes before closing. Talk about timing...damn we were good!!!

Sunday we went and saw some Alligators out at Brazos Bend State Park. We saw A LOT of Alligators...It's a little spooky because there isn't anything between you and the gators. I guess if they are hungry you better hope you are faster than the person next to you...or someone brought a dog? just kidding.... We also saw baby gators and they are zoo freaking cute until you realize that they can cause major damage just like their momma gators.

So here is a big big big THANK you to Callie and Jen for coming to visit me and hang out :) You guys are the best. 

100 degree day

Who knew the first day for it to reach up to 100 degrees here in Houston would acutally turn out to be a  beautiful evening? I spent the majority of my day inside!! except for maybe 45 minutes when my Aunt and I decided to brave the pool and try and get some sun.

I lasted about 5 minutes before I had to hop into the pool and cool off and we barely made it 45 minutes outside.

But after the sun started to set we ventured down to Discovery Green park in downtown Houston with my dad and listened to some live music. It was gorgeous out with a slight breeze and a huge apartment building placed so perfectly that the whole hill was cast in shade. The only thing that could have made the night better was if there were a few yummy food trucks hanging around the park with good eats!

Who knew Houston was so pretty at night? 

A Sticky Situation

This morning as very sticky! We helped my dad's friend harvest honey out of his 2 beehives. For my dad the amateur bee-keeper this was valuable experience in how to harvest honey when his two hives are full! Ohh ps did I say it was sticky? IT WAS STICKY!! there was honey everywhere ...i found some in my hair hours later!



^ my dad found this awesome app Magisto and you send them a couple videos that you take and they put them all together to music that you pick! It's amazing and its FREE

All in all we got about 100 pounds. yes, ONE HUNDRED pounds of honey! It was absolutely ridiculous.

A little less about the bees and more about me! hehehe... I had a check up at my Dr's today and it went AMAZINGGGGGG...Well it was good.  Everything is going in the right direction and thats the best news that I could have right now.

Tomorrow will be the end of week 2 on the medicine and so far no adverse reactions WOOHOOO..maybe back to philly sooner than I thought...who knows maybe I shouldn't get my hopes up THAT much

Frustrations UGH!

Last night I spent a lot of time searching online and looking at forums, websites etc and it just started frustrating me to no end. After searching it felt like probably every forum that there is and not one of them had anyone my age talking about MDS.

Yes, I know that this is a disease that affects mostly 70+ year old men. I thought at least I would be able to find one other person on a forum that was going through it at my age, preferably a female but hey! I won't get too picky. seriously every single person on these forums was OLD. All the information I can read about my disease only really pertains to people over the age of 50 or for little kids who have a different form of MDS.

THERE ARE NO MATERIALS FOR YOUNG ADULTS!! ok, yes I should know this and expect this since my Dr. has only seen a handful of patients that are around my age, but I would think I would be able to find something/someone (one little tidbit) online. I mean come on the internet is HUGE! (hahah).

So those are my frustrations right now and maybe I can do something to change the resources out there.

My searches and internet roaming was not a complete loss. I found a lot of websites that support Young Adults with any type of Cancer like Stupid Cancer.

I also found that the Leukemia Lymphoma Society (LLS) , which cover MDS because not sooo long ago MDS was called Pre-Leukemia, is the organization that has Team in Training for a bunch of 1/2 marathon runs etc. They also have a big walk in October called Light the Night Walk.  So everyone put October 26th into your calendars as I am going to make a team :) and we are going to wear shirts like this:

aren't they amazing? I need one of these shirts like NOW and if you want one (they come in all different colors for all different cancers!) go here Fuck Cancer Shirts

So in the end my searches helped me find a lot of positive things out there but that underlying frustration is still there! 

*Knock on Wood*

Before I started writing this I knocked on wood so that I wouldn't jinx myself. So far so good with the medication. I have not had any (cross my fingers) side effects WAHOOO.  So this trip down here is truly starting to feel like a real little vacation , Med-i-cation if you will.

It is a nice little vacation except for every monday that I get stuck with a needle by the vampires! Luckily it is getting easier as they only take a few vials each time instead of FIFTEEN!! 

But in fun exciting news one of my favorite little guys turns FOUR today! I have known this little dude since he was a little baby just learning to walk and now turning into a different superhero every 2 minutes. 

Happy Happy 4th Birthday Charlie "Superman" 

Look Good...Feel Better

Thanks to one of my mom's friends who is involved with this program I attended the Look Good...Feel Better program for women with cancer. It was a great program that talked about skin care and make up. It talked about what kind of products to look for and what to try and stay away from. And I got a little make-up kit with all sorts of goodies in it as well as a makeover!  Now who doesn't love a good makeover :)

This program is all about giving women confidence as they battle cancer and like I have already decided you Feel sooooooooo sooo sooo much better when you are looking Good!!! I would definitely recommend this program to anyone who is diagnosed with any kind of cancer! 

After getting all dolled up I was lucky enough to have a birthday party to go to!

Thank you Look Good Feel Better!

My First Transfusion

Heres is a photo documentary of my 1st blood transfusion ever.

 

                                                     1. Before I left for the hospital 

                                                     2. My pager for my appointment

                                                    3. Janice looking beautiful as always

                                                    4. Blood pumping machine!

                                                   5. Bag #1

                                                  6. Yummy yummy snacks

                                                  7. trying to pass the time (7 hrs!)

                                                  8. red blood cell bag numero 2

                                                 9. Feeling great and finally at HOME!!! 

I received almost ONE QUART of Red blood cells, and from start to finish it took a total of 7 hrs.. waiting for my appointment, getting a Benadryl drip (maybe getting a little drunk off of it!)  and then TWO hours per bag of red blood cells and then OUT OF THERE!!! The staff there is amazing and definitely was as good of an experience it could be.

I am feeling tons better already and know I will keep feeling great for a while. Yay for more oxygen and not being dizzy all the time!!

Thank you to all the support and my time passed quickly with social media! All the videos, meme's websites were amazing and a great distraction :) ...I'm going to share my favorites soon !!

A Glorious Friday

So before I get to friday, lets talk about thursday for a second. What an un-fun day. I have I told you guys that I don't have much red blood cells yet. Well I don't and my Dr's favorite thing to do is to take my precious blood and test it!

Thursday was one of those days only made worse by getting more blood taken for stem cell matching! It seemed like they took all the blood out of my body and probably the closest I have ever come to passing out!!!  So thursday was not the best of days and very lo-key the rest of the day!

Lets get to the glorious relaxing FRIDAY!!! You know woke up blah blah blah boring everyday stuff and then went to help my mom at her kitchen to prepare for the saturday market and delivered some food to a couple places!

After working so hard at the kitchen  I was able to get a bang trim at Elements Salon, which was much needed!!

    Outside of Native Citizen                           Look you can see my eyes!!!! 

It feels so great to be able to see with out hair over my eyes! Thanks so much Michaela. Janice and I then stumbled upon this adorable home decor store down the street from Elements Salon, Native Citizen with AMAZING things. I cannot wait to have a home that I can start decorating with non Ikea furniture!!!

And you say the day can't get better...oh it does!! My amazing Aunt Wilma gave me the best massage of my life!! She is the best ever and oh man was I really relaxed afterwards (i'm not biased at all :) )

And then day ended with a little retail therapy and in my PJ's by 7.30!!! It was a great self-care day and much needed after my long day of appointments thursday!

new yoga pants and sandals!!! WOOOOHOOOO

as always thanks for all the support and outpour of love my way it is definitely felt

For my 25th birthday...

I got a rare blood cancer. lets just say I will never forget this birthday.

I was having a conversation with my mom prior to my Dr.'s appt. about what she did for her 25th birthday and she said she couldn't remember. We both agreed that I would never forget mine as it will change my life forever.

Being in the beginning stages of figuring this diagnosis of MDS q5 deletion has been a very interesting journey. I am fortunate enough to have parents that live very very close to one of (if not) the best cancer hospitals in the world MD Anderson. With that said I am now writing this post from Houston TX and will be here for longest time ever since I left for college!!!!

Tomorrow comes a big day of starting my treatment plan and figuring all that out with another full day at the hospital.

My first visit was photo-documented by my mother here are a few pics of the day:

waiting...oh the waiting that comes with Dr's appointments!!!

  

Tomorrow we find out about a bunch more stuff and hopefully start my actual treatment plan to get me feeling back to 100%  Wish me luck!!

"Life is about not knowing, having to change, taking a moment and making the best of it" - Gilda Radner