Thursday, August 30, 2012

Chemo Round 4 - Session 2


Today was the final session of this new type of chemo before we do another CT scan (which is scheduled for Friday, Sept. 7th).  We arrived promptly at the clinic but had to wait for the doctor's approval to actually go ahead with the chemo. Mom's blood draw from yesterday showed her sodium and phosphorus levels were a tad bit low.  She was also given a hemoglobin boost as well today to help her energy levels. Tomorrow, we're heading back to the clinic to do a neulasta shot which is suppose to offset the rapid drop of the white blood count this chemo often brings. Dr. A is hoping that by doing this shot, it will prevent mom from being admitted into the hospital again.

Today's chemo session was just mom and I. It seemed like it's been ages that we went to a session just the two of us since we've had family in and out of town the past few months. It was nice to have her to myself. I was planning on just reading this Archies comic book I found in the magazine rack but instead we talked pretty much the whole time. Actually she did most of the talking; she was quite the chatterbox today.

Blast from the past! The first comic book I ever read...introduced to me by Sandra and Rajen :)
She is especially happy that my aunt and uncle (Sandra and Rajen's parents) came into town to visit her.  I haven't seen her this happy for quite some time. It really cheered her up. It was the first time seeing them after Sandra's funeral back in January. I can tell the pain is still raw...ugh my heart hurts for them. My aunt who's been pretty much the primary caregiver for both Sandra and Rajen..is THE person who really understands what I am going through. I'm not saying others don't understand but to live it and experience it first hand...is to truly understand it.  When you have to dig so deep to be strong and get things done because it is what that is needed. Not a lot of people really get that.

I know that seeing all this must be hard on them as it brings back memories of what they lost.  But, I am so thankful they came to visit and offer their support. I've always considered them my second parents ever since I was young.  They are two of the most strong-hearted people I know.


Wednesday, August 29, 2012

The Shit Just Hit the Fan


Those were the words that first went through my head on June 11, 2012...excuse my language. This was the day we found out that mom tested negative for the genetic marker that makes you pre-disposed to the diffuse gastric cancer in my family.

So what does this all mean?

As of today, top researchers across several countries are trying to figure out why my mom is negative. In layman's terms: There was a genetic marker identified back in 2011 when they ran a full genetics sequencing on my cousin, Sandra after she was diagnosed with gastric cancer (the same cancer that took Rajen). From that marker, family members were given a letter to go get tested for this particular marker as it makes you more pre-disposed (around 60-80%) of getting diffuse gastric cancer. If you were positive for the marker, you'd have a very high likelihood of getting this specific type of cancer.

After numerous tests and re-tests, all we know for certain is mom's blood work keeps coming back negative for that marker. They've even search her entire gene for other markers. They've ruled out that it could be a lab error at this point. They are now looking at other theories..all of which are super rare in a situation rare in itself. After all, only about 150 families worldwide have hereditary diffuse gastric cancer.

The research as it stands now

Over the past few months, I've been the unofficial leader of my family to inform them of what this all means. Before, we thought, a negative result for the genetic marker was a good thing and gave us a sigh of relief. But, after consulting with the consortium studying our family's genetics, they said that all negative results are very questionable. The fact is mom has diffuse gastric cancer that perfectly aligns itself to what Sandra had. It would be obscenely weird for mom to just get diffuse gastric cancer just randomly when there's an identifiable marker in the family. As far as we know, it's never happened before and they are all scratching their heads. There are some theories bouncing around that the marker in mom is hiding itself somehow. If that's the case, who knows who else it can be hiding in that's already been tested negative.

My fear...

is for Mandy and I. We are trying to be proactive and researching as much as we can about this. Our futures are at stake. We were both tested negative for the marker last year but right now that means squat We've both witnessed what this horrific disease is capable of from three close family members. And to make matters worse, early detection of this is practically non-existent. By the time you have noticeable symptoms, you're at an advanced stage of cancer and survival rates in the single digits.

My Wish...

is to find answers and hope it's in time. Whatever is going on, it's beyond my control and it's much bigger than I am. I trust in the research.  I don't want to die from this. I don't want to see Mandy die from this.

I don't want Stan or Mandy to lose me from this.

Sunday, August 26, 2012

Mom Bear



Yesterday, Mandy got the goofy idea to put mom's wig on a teddy bear. She called her Mom Bear. I thought it was cute so I took a pic of Mom Bear. Yes...we are silly but it was a good laugh by all :-)

Chemo Round 4 - Session 1



I'm a little behind on blogging this week. Last Thursday, mom had her fourth (and potentially last) round of chemo. Next Thursday will be the second session of round four; then we find out if this new regime made an impact.

It was actually the first chemo/hydration appointment that I did not attend with her. I figured that since Mandy was in town for the last two weeks in August, it would be a good experience for her to go with mom. It was Mandy's first time going to an actual chemo session with mom. Stan and my aunt also went along with mom for support.

To tell you the truth, it was rather strange not going because since May I pretty much went to everything with the exception of a CT scan. I caught myself calling Mandy's cell to check in even though I knew everything was ok.  I guess I've become a bit protective since this all began. But, it was also a much needed break for me because I knew with Mandy and my aunt leaving town again, life as I know it would get crazy again.

Working full-time, being a supportive wife, primary caregiver for mom, managing all the ins and outs of two households (one with 3 pups), taking care of financial and legal matters since May and being the go-to person in my family to coordinate all the genetics testing, research and theories with specialists from all over the world. The last reason is especially important to me and the ones I love. I will explain more in a later blog once I am able to put it into words. It's been very difficult to talk about.

On a lighter note, my mom got some vistors the day before her chemo. It really perked up her spirits when some of her co-workers visited.





Tuesday, August 21, 2012

TPN

Training hard!
This past weekend, my sister and I got educated in learning the ins and outs of total parenteral nutrition (TPN). As I mentioned in my previous blog, mom needs more nutrition in her daily diet. Dr. A put in orders for the Walgreens Home Care program. The nurse came to mom's place and taught Mandy and I how to administer the fluids. It's a pretty intricate process and doing it the correct way is of high importance since we don't want any complications. Knowing someone's life is in your very own hands is a weird concept; there's no room for a mistake.

The first time Mandy and I did administered the TPN for the first time alone was..um..interesting. We were ridiculously slow. We had one little hiccup with the tubing having air bubbles but we trouble-shooted the problem and got it working. Mom even made a funny by saying, "You guys shouldn't give up your day jobs".

All in all, not too bad. I think once we do it a half dozen more times, it'll be second nature.

Nutritional goodness
Lots o gadgets!
Vitamins to be mixed
Mandy chillin' after a learning TPN

Friday, August 17, 2012

Small Steps


Mom was discharged from the hospital last night. She is doing a lot better. In the past few days we met with numerous medical professionals (nutritionist, gastroenterologist, palliative doctor etc.) along with visits from Dr. A. We all came to the consensus that we are going to just think a few steps ahead and manage whatever issues/concerns come up. We are not thinking too far ahead. Mom was given some new medications to manage symptoms and get her on track for the final round of chemo which is next Thursday. After long talks with Dr. A, she really wants to go through with this second round of the new chemo. Once that is done, we will do a PET and CT scan and make more decisions.

Up to this point, the primary reason why chemo has been hitting her so hard is the lack of nutrition. It is difficult to keep food down due to the stomach wall not contracting. She will be taking a med called reglan to aid in digestion. We were also given an option for the GI to scope and see if there's a blockage (if this is the problem). If indeed the blockage is the an issue, we will think about inserting a stent in.

Over the next week and next round of chemo, the doctors will be fully loading her up with whatever it takes to manage her pain and keeping her nutrition high. She will be doing some home care hydration which will be very convenient. It will serve as the backbone of her nutrition.

 I am glad that the team of doctors are so amazing and informing her of all the possible options out there. Not only are they highly educated but they are truly compassionate. They've taken the time to know the family history of all of this. I feel like if this were to happen to me, I know that these are the people I want my medical care with.

Tuesday, August 14, 2012

Another Hospital Visit...Sigh


Today we went in for a hydration appointment at the clinic after mom's been feeling super fatigued and has been experiencing a lot of pain. We started the fluids as normal and luckily I ran into Dr. A who wanted to know how mom was feeling. I mentioned her symptoms and he ordered immediate rush blood work to be done.

As I suspected, her white blood count dropped to a critical 0.8. Not good! She also had a low grade fever as well. Not good!  He put in the order to have her admitted into the hospital again to get things under control.  My sister, Mandy is visiting so she's been able to help Stan and I out a ton. Last time, we were bogged down beyond belief.  Dr. A came to visit in the hospital as well to evaluate what our options are at this point. We're considering pulling off of chemo once and for all and just going the palliative route. It's really hard to say that word but chemo is really diminishing my mom's life. I've come to understand that a longer life is not necessarily better. I just want my mom to not be in pain and for her to be as comfortable as possible. For her to feel normal again or close to it...

I will update more tomorrow.

Monday, August 13, 2012

Pet Therapy

Ever since mom got diagnosed back in May, I've noticed a significant change in my dogs' behaviors. Back in May, they would always sniff her tummy as though they knew she was sick. I remember there were nights that she'd be in pain and moan and my eldest dog, Xavier would get up from his sleep and lick her face to make sure she's ok. It was like clockwork throughout the whole night. He'd make sure she was okay and then go lie down next to her.

Then as mom started chemo, my dogs became more close and in tune with her. When she'd be resting, Blizzard would jump on the bed and lie besides her while my other two dogs sat on the floor close by. They did not want to leave her side. When mom would get up, Blizzard would let her rest some of her weight on him to get her balance and guide her slowly to where she was going. It is an amazing sight to see. She really has a bond with them. She would even mention dreams she'd have where the dogs would protect her. I hope that my dogs are giving her at least some sort of comfort in these hard days. They love her so much.


A Nice Little Outing



This past weekend, mom was up for a short little outing. She was still very tired from the chemo but she wanted to get out and enjoy some of the nice weather. We only went out for a little while but I took the opportunity to get some pictures. With this new chemo, she's completely fatigued and lethargic all the time so she has to rest and conserve her energy as much as possible. She also wanted to get a bit dressed up so she wore her jewelry pieces. She wants to thank people who've purchased pieces of The Rita Collection and supporting stomach cancer awareness. It means a lot to her.




Thursday, August 9, 2012

Chemo Round 3 - Session 2



Today's session went well. Mom is feeling pretty good.  Her white blood count was a bit low but it was still within a reasonable range to go forward with the chemo treatment today.

She was in good spirits as her two sisters came to visit her again. It was a girls day at the chemo clinic today. They told me stories of when Mandy and I were young and all the naughty/cute things we did. It filled my heart with so much joy to see mom laughing and reminiscing of the past times. I wish all days can be good days like today...

A fellow stomach cancer warrior friend of mine wrote this as her Facebook status yesterday. I thought it was fitting because up until a few months ago I really didn't know deep down what a 'bad' day was. The things you see right before your eyes and the pain you have to push through to make it to the next day is life changing.

Feel free to think of me when you're having a bad day. I just feel blessed to have been given another pain free day! :-)  -- MC

Here are some pics I took of mom and my aunties today. Mom is sporting some pieces from The Rita Collection.


Friday, August 3, 2012

Chemo Round 3 - Session 1


Yesterday we started the third round of chemo. There will be 4 sessions in this round. Mom is relaxing a lot today. This  new chemo makes her very weak and exhibits a lot of  flu-like symptoms, so we are trying to manage that. We're also keeping a very close eye on blood counts and making sure she's hydrated. She wants to thank everyone out there for thinking of her.

Here are a few pics we took yesterday!




Thursday, August 2, 2012

The Rita Collection



The wait is over. The Rita Collection is here!

I am so happy to announce this jewelry line dedicated to my mom and her journey. The color red was chosen because that is my mom's favorite color. It signifies passion, strength, and courage.

With any purchase from The Rita Collection, 20% of proceeds will be donated to No Stomach for Cancer, a charity dedicated to raising awareness and funding research for stomach cancer. They've helped me personally through difficult times and I believe in the work they do as it directly impacts my family.

I encourage you to support this amazing cause and my mom, Rita. My mom loves jewelry and will be sporting a few pieces very soon.

I heartfelt thank you to Jana Litecky, who put her heart and soul into this. Words cannot express the gratitude I feel.

To order go to: http://shoppingbuyfaith.com/stomach-cancer-awareness.html

So, what are you waiting for? Go shopping! :)

And when you do buy your bling, please send me a pic (loritas@gmail.com) of you wearing it. I want to show mom how much support she has.

Wednesday, August 1, 2012

This is it



The last few days have been so low for me. Mom has been having a rough couple days. She's been unable to keep anything of sustenance down and many other issues that I choose not to discuss.

I'm scared about tomorrow. This is it. Will this new chemo be responsive and give us more time? I'm so so tired of bad news and so is she. The realization that she won't make it through this has been taken a great emotional toll on her. All I can do is be there for her. A shoulder to cry on and a voice of hope. Up to this point, I've done a decent job at keeping my tears at bay and focusing on what I had to accomplish. But this week, I find myself just crying all the time because she's asked me to start doing research on hospice care and final arrangements.  

I also think of that look she gave me at our last appointment when she found out the cancer got worse haunts my mind. The tears that flooded her eyes and the trembling of her lips...it was like she was the child crying and I was the mother comforting her.

I am not very religious but tonight I am praying for some good news as we head into chemo round 3.  Sandra..Rajen...she's not ready yet.


Capacity of Love

My dad came to visit from New York for a couple weeks to help me out with whatever he could. I just wanted to thank him for coming to Minnesota. Even though we live in two different states, it's was comforting to have my daddy here.

I remember when I was a little girl and running into him arms when mom was chasing me around because I had done something mischievous.  He was my knight in shining armor and protected me from whatever punishment I should've gotten. :-)