F* U* 5FU

Cindy:

5FU, why is our's a love/hate relationship?

Oh I know..

I Love you because you keep the cancer at bay, I hate you, because at what cost?

January 21st,2014

Tuesday

So mom had chemo yesterday and has been feeling terrible ever since this morning.

 Her face has been beet red one of the side of effects of the steroid she gets during chemo and she's been throwing up to boot. 

She had a little bit of a temp probably due to her tooth infection but it wasn't too bad. Mom's renewed love for smoothies has me thinking maybe I should open a Jamba Juice in my kitchen.

Although I've tried being slick and adding Benecalorie to them, there just is no fooling her, she can taste it everytime and has me remake it without it.

Made her a mango one this afternoon and so far so good.

She broke down today and cried for a good while, she was holding Ellie and began to worry that before long she won't be able to carry her, it took a bit but after a little reassuring she finally calmed down.

Jess invited us to lunch but mom wasn't feeling up to it, she asked us to leave her the baby. But by the time we were about to leave she had changed her mind for the 4th time and said she'd just feel better if we took her with us, Just in case she got sick again while we were gone, so we did.

January 24, 2014

Wednesday 

Nurse Betty came by today to take off mom's chemo pump after her 46 hr infusion. It's the first time she's ever come over and found mom somewhere other then her room. 

Progress :-)

January 24, 2014

Thursday

All week has been pretty much the same, mom's has been super exhausted and has barely gotten out of bed this week. When she has gotten up it's only been to relocate to the couch in the family room. 

Thankfully, It's Thursday 

which means Nanny Ellie is coming to spend the night, which makes mom so happy. 

Sometimes I don't know what I'd do without visits from you and her. With your visits becoming less and less because of work and school these days, I so look forward to seeing her because although mom's here, some days it's kind of like she isn't.

I've also noticed when ever Nanny comes mom's more like a kid. Nanny really dotes on her, whether it's covering her with the blanket, bringing her cookies or favorite hard candies or even just sitting on the couch with her rubbing her head, I can tell mom feels like she has a mom and it makes her less restless. It also gives me a chance to get things done which is always awesome.

We are truly blessed that God put Nanny into our lives 34 years ago and gave mom a mom and us a nana, because although not related by blood the bond that we all share with her is unbreakable.

January 25, 2014

Friday 

Nanny decided to go back home this afternoon instead of early this morning. Was a little worried at first because of the winter blast prediction, but It wasn't to bad.

She stayed with mom and kept the baby, giving me more then enough time to take the big kids out to lunch, an early show and for a frozen yogurt. It was nice to get out and not have to worry about rushing back.

January 26, 2014

Saturday

 

Mom's talked to me several times about having vivid dreams and dying this week. I started spacing out her pills a little bit more to see if it helps with the dreaming. As for the dying, I don't really know what to say or do about that. I think when ever she starts having a really hard time using the bathroom the subject always seems to come to mind:-( who knew "not pooping" could instill such fear in us?

January 27th, 2014

Monday

7 days since chemo and mom still hasn't had very much to eat, but has been awake and hanging out with the kids all morning since they ended up having a snow day today. 

 Even though Ellie has the worst cold ever keeping the two them apart has been nearly impossible.

Made eggs and homemade hash browns & sausage patties this morning for breakfast. Unfortunately, it took me longer to cook them, then she was actually able to hold them down.

On the upside, she saids the pain has subsided a bit. Now we just have to worry about the vommitting and her not being able to go to the bathroom:-(.  

Next ct's on 2/17/2014 hoping & praying for a good one.

Poop's the cure! Who knew?

Cindy:

January 21, 2014

Tuesday 

5:10am

If your reading this you may think I discovered the cure is poop. Bad news I didn't and it isn't..

Since my blog is my own personal platform to rant about everything cancer related, and it's 5am and I'm restless after reading some of the ludicrous sh$* out on the World Wide Web, here goes nothing....

 

 It really has grown to bother me over the past year when I read that there's a "cure for cancer" and it's just being hidden by the medical community.

I'm pretty sure if there were a cure out there, it would be every marketer's dream and selling hand over fist, quicker then it was being manufactured. 

In my opinion the people that are usually trying to sell you this mumbo jumbo nonsense are trying to replace it with whatever or whoever they're selling instead.

Let's see, if all it took was a $10 bottle of vitamins from your local health food store, some random baking stuff out of your pantry or rolling around in animal poop to be cured.

No one would have cancer!!!!

Because let me tell you if 

Any of those things honest to goodness would cure my mom from this ravaging beast that will eventually take her from me.

Don't you think I'd be in my kitchen like Betty Crocker/The mad scientist baking brownies stuffed with ginkgo-biloba watching my mom high as a kite from her marijuana pills covered in horse poop (from the local horse track since I live in the city) eating them saying "The rabid squirrel made me do it!!!!"

(If you have no idea what I'm talking about refer back to my "Rabid Squirrel" story two blogs ago..)

In all seriousness and all kidding aside, I pray and have faith that soon with the strides that are being made in cancer research everyday, a real cure for all of our loved ones will soon be discovered. 

And I won't have to subject my sweet mom to dancing naked in the rain, while singing the hokie pokie and balancing a spoon on her nose.

( Nobody try this at home, it's not really a cure to anything and we've never tried it, but it may actually be kind of funny. "Ok, what the hell, go ahead and try it and let me know how it works out!")

Chemo 22~

Cindy:

January 20th, 2014

10am

When mom was diagnosed last December we were told chemo for her would be indefinitely every 2 weeks, until it stopped working, or she decided she no longer wanted it. 

She hasn't really had any side effects aside from the fatigue and loss of appetite from the 4th-7th day.

And although she has some bad days, when she has good days they're great.

Well today will be Chemo #22 for mom, and as crazy & selfish as it may sound in the moment, I'm hoping for at least a  hundred more....

1:00pm

Waiting with mom for chemo and she's feeling good, so good that's she's had 2 cups of coffee and eaten almost a whole bowl of laffy taffy's while we've been waiting.

The weigh in..

http://www.youtube.com/watch?v=4kibP_3GDrA

5pm

One of things I've noticed since  mom was told she has cancer is that she no longer has the filter most of us live our lives by. 

She's always pretty honest whether you like it or not, yet somehow still seems to let everything roll right off her back, no longer taking life so seriously. Well that was the exact case tonight...

So mom was getting chemo while eating dinner at the same time, the young nurse who was orientating decided to sit down and chat with her.

Mind you I'm not really paying to much attention at this point because during chemo mom usually sleeps and I try to distract myself by reading.

When I hear the nurse say "God does everything for a reason and miracles do happen." Intrigued by what's to come next, I put down my book to listen. 

She begins to tell mom about a patient she had who had been diagnosed with an inoperable brain tumor and chosen to seek out a second opinion. 

Now with " miracles happen" being the opening line, what I assumed she was going to say next was that during that second opinion he had found out he had been misdiagnosed or that he had some radical treatment that had cured him. 

You'd think right? Wrong!

Instead she asked us If we had heard around thanksgiving time of a blind woman and her husband dying in a fire. 

It turned out that the husband was her patient with the brain tumor. 

I said "I don't get it". 

She said, " All this time time he thought what was going to kill him was the brain tumor, but what actually took his life was the house fire..

I looked at mom who looked utterly confused and I cringed and waited..... 

Mom turns to her and saids "So is what your saying, not to worry to much about dying from stomach cancer because a miracle may occur where I die in a freak accident before then? 

The nurse realized her story may not have come across exactly the way she intended it too and looked kind of embarassed. 

Mom tried to put the nurse at ease and just smiled telling her not to worry too much about it because she was ready and when it's her time it's her time. While jokingly encouraging her not to become a motivational speaker anytime soon.

When as we're leaving mom smiles and saids " I'll see you in two weeks, that is if I don't get killed in some random accident before then.

Me, I said absolutely nothing and just thought to myself maybe from now on chemo time should be quiet time, and I should just stick to reading my book....

Sharing is Caring~

Cindy:

January 17, 2014

I will continue to add and update this particular entry as I learn about new things that can benefit others in hope that it will help someone in some way.

Sharing is Caring!!!! 

One of the biggest worries we have as caregivers is who will take care of our loved ones, as good as we do while we're at work. 

Some of you may have taken a personal leave or just quit your jobs all together to stay home and do just that.

Did you know if you are your loved ones primary caregiver and they're on disability, the state you live in could possibly pay you to stay home and take care of them as their personal assistant. Contact your local Department of Aging for more information about obtaining a PA Package.

So went to the pharmacy today to pick up 5 prescriptions with a retail value of almost $600. Even with having Blue Cross/Blue Shield coverage, my out of pocket was still a little over $200. 

Coincidentally a few days ago I had received a prescription discount card in the mail and it had just been sitting in my purse collecting dust.

I decided to ask the pharmacist if she took this kind of card, and she said "yes". 

So I'm super excited to show you what I ended up spending...

You can't use both, only one or the other but you can definitely use the one that gives you the better price.

Attached the link below in case anyone's else is interested...

Added a pic of final cost in comment section.

http://rxreliefcard.com/how-does-the-card-work

Gone back to her roots~

January  14th, 2014

Tuesday 

10:30am

Being that my mom's middle eastern we grew up eating lots of Arabic food.  But I married a Frenchmen/Chef who loves to cook with all of my favorite things like heavy cream, butter and wine which don't always agree with mom. 

So I've gone back to her roots and started cooking Arabic food which seems to be a lot gentler on her stomach. 

I found Dede Med's middle eastern food cooking channel on YouTube last year that I use all the time and just wanted to pass it on in case anyone's interested. So today I'll be making "Mujaddara" one of my mom's favorite dishes and crossing my fingers that it appeals to her and tastes like the one her grandma used to make.

So here's  Dede Med's link for some yummy but stomach friendly recipes..

http://youtu.be/Dpx74oZT6-w

Daddy said they're be days like this~

January 13, 2014

Monday 

6:45pm

Sitting in the dentist office because mom has had a  tooth ache since this morning and may need a tooth pulled. 

Now the assistant is telling me we may need clearance from her oncologist first, if she ends up having to have it pulled. Has anyone else had this problem or are we the only lucky ones? 

By the way this would be a lot less amusing if mom didn't look like the guy from Weekend at Bernie's. Thank god for her happy pills....

All done!

If you've ever 

watched golden girls you'll remember Rose was always saying "my old uncle Olaf used to say...."

Well, when I was kid my dad always used to say in Spanish "Dios aprieta, pero no aorca." Which in English basically means God may squeeze you tight, but he'll never strangle you. Which to be honest makes more sense in Spanish, But proved to be very true tonight. 

As I sat filling out the paperwork for mom before seeing the dentist, I wondered how much this was going to put us back since she doesn't have dental coverage and it's been a pretty expensive week already with everything else that's been going on.

I was dreading the total and In my head was figuring that by the time everything was said and done tonight's visit was going to cost me about $500. I thought to myself what else could possibly go wrong this week. Imagine my surprise when I got to the reception area with my credit card in hand waiting to hear the grand total and what I heard instead was that today's visit was totally on them and to just take really good care of my mom. 

I thanked them profusely and tried not to cry in front of my mom because those kind of things never happen to us and as high as she was I didn't want her to freak out and think the squirrel made me do it. :-)

So on my way home I decided to leave her in the car and run into the pharmacy to pick up her antibiotics, took out my credit card to pay for them when the pharmacist that by the way, I'm also on a first name basis with because I see her so darn much saids " there's no charge". Well just then I couldn't hold back the tears I'd been holding back all night. She comes around the counter gives me a hug and said " Cindy, don't cry their only antibiotics." 

Well I started laughing and walked back out to the car, just to find mom eating donuts like they were tic tacs. 

I think it's fair to say she's going to be ok:-) 

Rabid Squirrel~

Cindy:

January 12th, 2013

Sunday 10:05pm

As I sat here tonight I felt lonelier then I've felt in a while. Sad, Imagining my life without ever hearing your voice, seeing your smile, hearing the crackling sound of a fire starting and inhaling the smell of wood burning as we all sit around the picnic table joking at dusk during our Sunday barbecues from summer to fall.

 Remembering all of the talks we've had over the years, looking at the couch I see you there laughing and smiling, then I close my eyes and try to imagine you gone from my life and the pain that swells my heart at even the thought of it, completely overwhelms me.....

 

Today started off like any other day, crazy.. 

In my mind I'd already started to do a mental inventory of what had happened in the past week without me even leaving the house.

While doing that the carpenter shows up, now your probably thinking everything sounds normal so far right? 

Yeah, not so much. In the past week the radiator blew on the minivan and had to have it replaced, the upstairs shower sprang a leak so it was raining in the kitchen, and with it being so cold last week we had squirrels take up permanent residency in the crawl space above mom's room. 

So like any "normal person" would do, mom had our brother pick up alka seltzer and throw It up there. When I asked her what exactly that was supposed to do. Her I shit you not answer, and she said it with a completely serious face was "So the squirrels explode!!" Huh???

Now in my mind I'm thinking in actuality what's going to happen is the squirrels are going to eat the alka seltzer, run out of here foaming at the mouth and with as little as goes on in this little town by 5 o'clock it'll be on the evening news "Rabid Squirrels on the loose". Story at 10.

 As I write this I can't stop laughing just thinking about it. So anyways, the carpenter comes into the house and mentions to me he forgot his radio, but at this point I'm not really paying to much attention because I'm making the kids breakfast, sending mom her pills with Vic, while giving Connor cough medicine and trying to explain to Noah that although the word ass means donkey we don't use that word in everyday life when referring to donkey's.

When Connor asks me for a broom I really don't think anything of it. Next thing I know the carpenters hanging 1/2 way out of the crawlspace making a racket with the broom while singing at the top of his lungs for about a good 5 minutes.  When he finally comes down from waking the dead, he explains he was trying to make sure the squirrel got out before he patched up the hole. 

When I asked him "So what happens if the squirrel's still in there after you patch the hole? His answer, wait for it, "He'll  die." No shit Sherlock.

In the meanwhile I convince mom to get up for a while and come to the living room so I can set up her hydration. As I'm grabbing everything, I bump into his ladder leading to the crawl space door, that he oh so conveniently left wide open and his black gloves fall on me, which I in turn think is the alka seltzer eating squirrel and almost have a heart attack, but at least mom got a good laugh out of it. 

So as mom walks from one room to another catching everything in her way with the Iv pole behind her, she gets it caught on the light fixture and almost brings the whole thing down with her. Luckily the carpenter was still around to fix it.. 

Funny was when the carpenter asked how this happened, mom who was super high by this time sitting on the couch eating brownies with her eyes closed  told him "the squirrel did it while trying to get to the pizza". Huh?? 

The carpenter puzzled, looked at me while I tried to explain to him not to mind mom to much because she'd just taken her marijuana pills. Needless to say I don't think he'll be coming back around anytime soon. :-) 

Yet all in all today turned out to be a better day then yesterday. Mom ate what seemed like all day. And after her 2nd dose of Marinol she ate like nobody's business, everything from soup to tuna, to at least half a dozen oatmeal raisin cookies and oohey gooey brownies I made.

After a while, when she finally got tired of eating, she headed back to her room and went to sleep and has been sleeping ever since. 

I feel the way you do when you first have a baby and check In on him every 15 minutes to make sure he's still alive. I've found myself in her room several times tonight almost tempted to pinch her awake. Which makes me can't help but wonder, "How someone can possibly sleep this much?" And then in my head hear her answer, "I'm just so tired". 

With that being said, I've decided not to push her to see the gastric surgeon a friend had recommended a few months back known for his forward thinking when it comes to stage 4 gastric surgery and just enjoy the time we have as crazy as it may be, because in the end what may be other people's crazy is just our every day normal and we're ok with that..

Foods that work for her~

Coconut Oatmeal

1 cup oatmeal 

1/4 cup sweetened coconut flakes

soaked in 1 cup of water for about 5 minutes.

Bring 2 cups of milk to boil, once boiling add oatmeal & coconut flakes, bring down fire and simmer.

In a separate bowl mix one package of Instant Carnation breakfast (vanilla flavor)

to 1/2 a cup of milk after mixing well gradually incorporate to simmering cereal while continuously mixing so it doesn't clump add 1 tablespoon condensed milk (optional).  

And stir to desired thickness.

Black Bean Soup

1- 16 oz bag of black beans

Soak beans overnight in chicken broth for best results.

1 onion (chopped finely)

1 tbsp of butter

1 tsp salt

1 tsp black pepper

2 tbsp cumin powder

MiddleEastern Lentils & Rice Recipe

http://youtu.be/Dpx74oZT6-w

Rice pudding

Oatmeal Raisin Cookies

Pound cake

Greek yogurt

Mango Smoothies 

Toast

Frosted Flakes

Sleep deprived~

Cindy

January 09, 2013

Thursday

11:25pm

Have been up since about 5 this morning and was just starting to fall asleep when my mom woke me up. She said she felt like she couldn't breathe and wanted to go to the hospital. I started to get ready and she told me she'd just taken a Xanax and wanted to wait for it to kick in to see if it helped. 

Which instinctively made me ask if she was feeling sick physically or emotionally, to which she responded emotionally, saying she feels like she's dying even though she isn't having any pain. 

Then she said she just wanted me to sit with her until the feeling subsided, as I started to ask her a question she asked me not to speak, but just sit quietly next to her. So here I sit an 1 1/2 later staring at her, feeling sleep deprived and super exhausted while she folds laundry.

Cookies & Chemo

Cindy:

So mom resumed her 46 hr 5FU chemo this past Monday after having taken another chemo break for the past few weeks.

 Unfortunately, she only received 20 hrs of it before it began leaking because of bad tubing and had to have it removed yesterday instead of today. 

With the weather being so awful she didn't want to make the hour trip back to the hospital for a replacement bag. 

Which in the end turned out to not even have been an option because their weren't any appointments available and the ER doesn't administer chemo anyways. 

At Chemo on Monday she weighed 116 lbs which means she's lost 6 lbs since her last chemo on 12-16-2013.

So I got to work baking cookies galore.. Coconut Caramel macaroons, double chocolate chip and Jelly cookies with Benecalorie and three days later their almost all gone. Yay! The tricky part was keeping the kids from eating them:-)

I've also been putting the slow cooker to good use and it's made everything so tender that mom has had a much easier time digesting and keeping everything down even meat. 

I have noticed though that she has started to crave some acidity in her foods like lime or vinegar which at first worried me, but she seems to be doing fine with it. I even made homemade sour cream with vinegar and she loved it! Thank god for you tube!

The doctor called to let her know not to worry too much about not getting the full chemo and that she would just resume again in two weeks. So as mom gets hydration and Ellie takes her 3rd nap today I've decided to get to work on making more cookies and homemade Arabic yogurt to balance out all the sweets she's eating. She'll easily weigh at least 130 by the time winters over at the rate were going, I hope :-)