Thursday, February 04, 2016

Toto, I've a feeling we're not in Kansas anymore....

I'm in Houston and had my first appointment with MD Anderson today. My cousin Mikey was kind enough to meet me here and accompany me to my appointments! I don't think I could have made it through the day without his support. We had a 7am start time, battled Houston traffic in time for my pet scan. The hospital is massive and there was tons of walking. I'm pretty sure I haven't walked this much since I got diagnosed...not to mention chemo has caused my feet to become so calloused that it's now pretty painful to walk. (Tomorrow I will soak my poor little feet and give them the TLC they deserve) Although MD Anderson is an extremely efficient hospital, it didn't take me too long to realize that I'm not in OKC anymore...under the protective wing of my little angel dr. H...things are different here.  I'm in a massive hospital where EVERYONE has cancer and I'm just one among the many. Unfortunately, things weren't set up the way I had hoped. I didn't get to meet with both the surgeon and the oncologist. I only saw the oncologist and I'm waiting for the referral appointment with the surgeon to go through. This will most likely require extending my trip. And although there is no place like home...and OKC is definitely where my heart is...I am so glad that if I'm stuck in a city...it's a city where 40% of my family lives! I'm so grateful to Ansleykins for opening up her home to me! I feel comfortable and well taken care of! I have lots of other cousins, uncles, and aunts who are willing to help and support in any way they can.  So yes, it's a hiccup..and hiccups are always annoying...but I have to focus on the positive aspects as well and remember i am still blessed! And trust me after an 8 hour day at the hospital, I wasn't feeling this optimistic but I had some encouraging calls and texts that helped me see the brighter side of things!

Monday, February 01, 2016

Updates...

So a few of my friends have expressed some concern that I haven't been updating the blog.  And I have to admit...I just haven't felt up to it.  I've come to realize that this whole chemo thing isn't just 5 days of being ill.  It's 5 days of being VERY ill...and then the remainder of the 21 days being ill.  But, I have a lot of updates and good news to share, so I thought I'd pull myself together and write a blog post.

Dr H. worked his magic and got me my first appointment with MD Anderson...this week!  I will be meeting with one of the top oncologists in the country.  So it's safe to say I'll be in very good hands.  And even better news is that I get to meet with the oncologist and the surgeon at one time in one appointment!!  So it's not going to be a long drawn out process where I have to fly out to Houston several times to meet with different doctors.  The first appointment and some testing will be done in this trip!  In my heart, I knew I shouldn't be stressed about getting into MD Anderson.  From the beginning, God has made sure that I have excellent and timely care.  And I knew he wouldn't just stop providing a way for me now.

All that being said...I'm flying to Houston and I'm still attached to Charlotte.  I have to admit I have been stressing out about traveling with my chemo pack.  I know getting through TSA would be annoying and just traveling with it, showering with it, and dealing with it in a new environment would be challenging.  Today I called Dr. H to see if I could get my chemo refill early since I'll be in Houston on my refill day.  He gave me the best news ever!!!!  I'm going to get unplugged!!!  They're going to let me go chemo free for a week.  I couldn't be happier about this.  Not only will this make traveling a lot easier, but maybe I won't feel so run down the entire time in Houston.  This has just been another way that God has shown me that He is very present...and the small things I worry about aren't small in His eyes.

So, although I haven't been feeling well lately...I'm still feeling hopeful and blessed. I know that God gives me enough strength to get through each day.


Monday, January 25, 2016

Recovering from my Bleh days...


After sleeping nearly 72 hours straight and getting IV hydration this morning I'm feeling a lot better.  The past few days were rough, but I think the new trial medicine I was put on will keep the side effects at 5 days...I THINK.  I hadn't been able to eat or drink much at all and that finally caught up with me last night.  I got up to go to the bathroom and suddenly felt really weak.  I started sweating profusely and felt faint.  I leaned my head against the bathroom wall and blacked out and woke up while convulsing.  I literally crawled back to my bed just in time to black out again.  When I came to,  it dawned on me that my blood sugar must be low.  My mom had placed a tin of hershey's kisses by my bed side...and I stuffed a few in my mouth.  It was scary to say the least.

Today, I was able to eat three decent sized meals and haven't dry-heaved at all.  So, I'm hoping each day will get better going forward.  Since I haven't really been leaving my bedroom lately, my frenemy brought over a TV for my room and introduced me to google chrome!  It's been life changing.  He also introduced me to the world of Malayalam movies.  Now, I'm not ready to say I'm a full fledged fan or anything yet.  But I did find it entertaining while I was stuck in bed!  And the songs lull me to sleep in no time!  I have this feeling I'm going to get addicted soon.  

So, on Friday I wanted to share some flashback Friday pics...but didn't feel well enough to blog.  So I thought I'd share those pics today...My aunt had taken these pictures on her phone of albums that were at our family home in India. She showed me all of them during big chemo day...I thought they were way too cute not to post!

My handsome dad and beautiful mom.  
My brother and sister before the light of their lives was born! ;)
I was pretty impressed with their clothes...I'm sure my brother's suit was pretty fly for those days. And my sister was on
point with her mary jane's, fluffy dress and matching bow.  My mom credited my dad for their style!

My brother and me...I think I was probably a year old...already visibly annoyed at him and had my fist ready to punch!


My mom and her her besties at age 16.  This one was really a treasure!  I had never seen a picture of my mom this young.  She's the third one on the right...Little did i know I got my love of accessories from her.  I fell in love with the necklace she was wearing, but of course she says that's long gone.


My mom's group picture reminded me of my own group picture I took at 17...which just seemed funny in comparison!
When I asked my mom why she went to a studio to take a fancy pic with her friends she said she had no idea. Come to think of it...I have no idea why I did either!!


Thursday, January 21, 2016

Round 3, day 1...

I can't believe today was the first day of my third round! I am so excited to get Charlotte the hell off of me in 21 days so I can move my dining chair out of my bathroom ( what I hang Charlotte on when I shower) and take a real deal shower without cords, tubes, and stick and seal covering my port! It will be a glorious day!!

Now that I'm almost 1/3 of the way finished with this process, there are more challenges arising which I need specific prayer for but I also had an epiphany about myself that requires a massive praise report!

Prayer request first...MDA...as my luck would have it...they are switching to a new software and therefore reducing the number of patients they are currently taking. The first appointment date they gave me is for April or May!!!! And that's just the FIRST appointment! This is absolutely not going to work considering I have an aggressive tumor!!  So we are currently working on some possible solutions!! God has provided me with excellent and timely care so far...so I'm pretty confident that He will open a new door for me!

Second request...I did take a new anti nausea med that's supposed to last five days..but now as I type I can feel this acidic feeling in my gut and the taste  of metal on my tongue...and so I'm getting a little nervous! I only have 5 or less days to spare for feeling crappy! I'm not doing 21 days of dry heaving this round too!!

Praise report...so dr. H  told me today that if he had to measure the aggressiveness of my chemo on a scale of 1-10...itd measure a 10. He said the other patients in the chemo room are  doing chemos that are at a 3. I was shocked actually and a tad jealous of the lightweights! He said that because I'm young they pull out the hardcore stuff to keep the cancer from coming back. He even said that if a young patient...who was at stage 4 had the same type of cancer he wouldn't run the same chemo that I have because it would probably kill the patient since it's so aggressive!! 

This made me realize the extent of how strong this stuff is!! I have to say God has given me some kind of extra dosage of superhero strength because I feel like I have handled this chemo fairly well...considering! Yes I have hard days and have dry heaved more then I can keep count...and had one mental break down, and maybe a few cry baby minutes...but overall I have done pretty good! My counts are great! I still make time for visitors and answer texts and emails and occasionally craft and clear my plate!! I haven't once considered telling dr h. I needed to drop down a notch and lower my treatment levels...It's definitely been Gods grace!!  1/3 almost down...2/3 left to go! I can do all things through him who gives me strength!

Thinking out loud...

When you are sick people like to tell you to have faith that you will be healed...to speak it into existence...to REALLY believe. I've been told these things a lot lately and I'm not sure how I feel about it.

Do I believe God can heal? Absolutely!! My BF is a walking miracle!  She was diagnosed with cardio myopathy when she was 17. Doctors said that she would need a heart transplant to survive. Her heart stopped twice. Not only did her heart start beating again...but she's alive and healthy today without a heart transplant. Anytime I question whether God can heal or not...her life is always my walking, talking example that He can.

But I know a lot of people who do have faith in Gods healing power and who do believe that He will heal them...but never receive their healing. People who trust God suffer every day...and die every day.   So what does that mean? Those people don't believe enough? Or have strong enough faith?  I think it's kind of a dangerous thing to tell people...maybe a false sense of security even...to simply really believe in your healing and it will be received. 

I'll tell you what I do believe. I believe Gods will is perfect...and I trust in that. I know that He has the power to heal me right now and I do not doubt that for a second. But that might not be His will for me. 

When my uncle visited me yesterday he spoke to me about 2 Corintihians 12...which is interesting because I had just read it the day before...so to me, that means God really wants me to understand something from this chapter.  The verse that spoke to me was verse 9..."my grace is sufficient for you, for my power is made perfect in weakness"  

I realized that this verse is what I believe...during this time of weakness ive been able to see how God loves...how He works all things together for good...how He can move mountains...how He provides peace that surpasses all understanding....how there's power in prayer.  I do believe God can heal me...but more importantly, I believe He has a plan and purpose for me...and that's what I choose to put my faith and trust in.



Monday, January 18, 2016

Not-So-Brave Shave...

So, after a lot of thought and deliberation, I decided to shave my head.  Since Christmas day, I had lost a lot of hair, but oddly not enough.  I still had enough hair to wash and comb and tuck in awkwardly underneath my hats.  The hassle was starting to outweigh the reward...it was becoming a source of contention.  I'd find it loose all over my clothes, and I was so worried about cooking and it falling into my food.  So, I decided today would be the day for me to shave it all off.  I considered having a brave shave party.  But there's no way that I have enough bravery to shave off my hair in front of all my friends.  Instead, I sat in my bathroom...facing away from my mirror and let Chocolate Chip shave it off...while H-town provided solace.  Afterwards, they both gave me a hug and let me cry it out.  I wasn't ready to look at it just yet, so I wiped away my tears and slipped my hat back on.  They wanted me to look at it while they were with me, so if I needed to cry more, they'd be there to provide hugs, kind words and tissues.  But I insisted on taking my first sneak peak alone.

Surprisingly, I didn't cry again when I looked at it.  I carefully inspected it and decided I kinda look like Sigourney Weaver in the movie Aliens...and I kinda look like my dad when his hair fell out...our heads are definitely shaped the same way.  Now...am I brave enough to share a hairless selfie?  Uh, no...no I'm not.  I'm not sure that I ever will be.  But, I don't regret my decision.  I do feel like I look less sick and this will be a lot easier to deal with on the daily.  My scalp is still sore...and really itchy...but I'll get used to this eventually.

Prayer Request:  Please pray that my hair does grow back...and that when it does, it will be stronger and thicker then ever before!  

Sunday, January 17, 2016

Parting is such sweet sorrow...

Me & Bella...my sister's Dogter
Growing up, my sister was more like a mini mom than she was my sister. Being six years older than me, she took the responsibility of taking care of me while my parents worked. It's been a long time since then but the past three weeks have reminded me of those days. She rubbed my back when I was nauseous, read to me, cooked and cleaned the house. She worked tirelessly to take care of me...even when she might have not had the strength to do it.  I'm sure that when I was younger...I probably didn't appreciate her as I should have and didn't understand that she wasn't being bossy and annoying...but everything she did was out of love.  I'm glad that as I've grown up, I'm able to see and understand that.  The three weeks I had with her flew by and  tomorrow she leaves. I wish I had more good days while she was here so we could have had more fun together...but I'm hoping that when this is all over there will be time for that. 


We spent the day with our uncle and aunt...our dads only brother. He introduced us to distant relatives who we'd never met before that recently moved to Oklahoma....oddly enough this aunty was a ten year breast cancer survivor. She gave me great advice about being optimistic, focusing on my faith...and even how to deal with hair loss. She had long, thick hair and told me that it had all fallen out...including her eyebrows...but it all came back in due time. It may have seemed like a chance meeting...but I believe that was a divine appointment. God sent a little cancer survivor angel aunty to encourage me just at the right time.

I'm not sure what challenges I'll have to face this week. Round three starts Thursday. I wish I had felt better longer in between rounds and I'm really hoping this round is less brutal. More chemo side effects are becoming apparent...my lips are so dry....it doesn't even feel like skin on my lips anymore. They are cracked and constantly burning. I've slathered them with coconut oil and lots of various lip balms but within minutes it soaks in and I'm back to square one. My nail beds and finger tips are turning dark. Luckily it's not painful...It just looks like I have dirty hands, but i painted my nails this weekend so they'd look a little better. My scalp is starting to hurt as well. The hair loss makes it really tender so I have sore spots...My prayer request for this week is ...getting through the red tape at MDA. It's time for me to focus on my transfer there and getting a surgery date scheduled. 

Before-black nail beds 
After-teal nail beds! ;)


Saturday, January 16, 2016

Broadening my horizons...


Avacado Smoothie & Sesame balls filled with red bean paste
Since I've been feeling better, H-town thought I should venture out today.   Like out past my 5 mile radius. She suggested we go to the Asian district for boba smoothies!  Avocado smoothies are my absolute favorite, so I couldn't say no!  Then she suggested that since we're on that side of town, maybe we should wig shop.  I thought it wouldn't hurt to LOOK...just LOOK. There were tons of wigs...some utterly ridiculous and some not so bad.  I tried to show the shop owner my original hair to see if there was a close match.  There wasn't.  I never realized how much I loved my hair back when I had it and was complaining about how curly and thin I thought it was.  **sigh**  I learned a lot about synthetic hair vs. real hair wigs.  And why lace front wigs blend into the natural hair line.  It was a lot of information for me to take in.  I tried on a few...and I felt weird and sad that I was even having to try them on.  The girls liked one on me...but I vehemently disagreed. The owner told H-town and Chocolate Chip that he didn't think I would find one that I liked because I didn't seem like I was ready for it.  And he was right...I'm so not.  He assured me that if I changed my mind, he'd remember me and the wig that they liked for me.  I have quite the slouchy beanie  and handkerchief collection now but I guess I wanted a wig just in case.   I haven't found the perfect wig for me...and when I do, I'm pretty sure I'll just know.  But for now, the search continues...To cheer me up, we had two of my favorite things from Cafe Oasis...An avocado smoothie and sesame balls.

The rest of the evening was spent in my craft room.  The girls felt the need to start cleaning it...and I very hesitantly agreed.  To say it's scary in there is a major understatement.  It's really pretty unreal how much junk...err...I mean craft supplies I have in there! Everything from party hats to 6 pounds of bath salts...It's just nuts and hard to contain in one room.  After spending at least two hours in it...they managed to get it about 40% cleaned and 0% organized.  After a certain point...the clutter in there brought out the crazy in all of us!  There's still so much to do, but it's nice to see the carpet again!