Saturday, July 27, 2013

Sick & Tired of being Sick & Tired..

It's been 7 months today since my mom who's only 57 was diagnosed with Stage 4 Stomach cancer (Signet ring cell type w/ mets to peritoneal cavity). Since Folfox chemo began for the most part everything had stayed pretty consistent with her but since her allergic reaction in May to the Oxaliplatin which has since been removed, this has to be one of the toughest months she's had so far. Since then she's only been receiving Leucovorin in hospital and a 46 hr of reduced 5fu infusion at home because her hand/foot syndrome got to bad to take the regular dose of 5fu. She has completely slept July away sleeping at least 20 hours a day only waking up to use the bathroom or eat a small bit. Even after waking she still feels extremely tired and most recently has constant nausea which for while there we had pretty well controlled. I feel guilty in saying this aloud, but I often ask myself these days, I know she's a fighter but should I continue to encourage her to fight? Is it more for us then for her she does it? Don't get me wrong I love my mother to no ends, but do I want
her to suffer or merely exist for us.  I remember when my mother was first diagnosed right before beginning chemo taking a trip to the salon to cut her beautiful hair.
She said before the inevitable happened she would do it her way, she sat in the chair quietly, tears streaming down her cheek as the stylist began to cut her hair.  I tried saying the right things like "it'll grow back  or "you look so young". 
What I didn't find out till months later was that she wasn't crying because she was losing her beautiful hair, which she never actually did. She was crying because of what it represented, of what all of a sudden became so real as each inch of hair hit the ground.  She realized she would live everyday from here on out wondering if today was the day, her last day.  Now, even though this is the only way I usually see her, I'm just glad I get to see her when she finally wakes up.




Sunday, July 21, 2013

Genetic Counseling......

Arriving at the hospital not really knowing what to expect next, my stomach was completely in knots worrying if this is the day that will change our lives forever.
First things first, my mother and I checked in for our appointment waiting for our black buzzer thing to vibrate to let us know it was our turn as we waited I looked around the room and noticed something.. There were several families sitting there quietly, if I had to guess I would say they're was a pair of sisters,  a mother & daughter, a mother with her adult children and a father & daughter.  Missing from my group was my sister because she was working and my brother because since my mother was diagnosed he's been in some sort of denial about the fact she's dying. One thing we probably all had in common was the sadness we all felt that seemed to take over the waiting area.  When we finally went in the nurse asked about are family medical history and proceeded to explain to us that she would be drawing my mother's blood and testing it for a mutation called CDH1, if she tested positive in 4-6 weeks we would then discuss how that would affect my siblings and I and what we would have to do next.  So now the hurry up and wait game begins.  
             
 To be continued.......


Update:
Results are in, drumroll please....
 My mother tested negative for the CDH1 gene. Yay! Thank god one less thing for us to have to worry about. On to the next challenge.....

Friday, July 12, 2013

Chemo again...

Cindy:
The past few weeks have been pretty tough on my mom.  Chemo is finally starting to rear it's ugly head, she's barely awake these days. In the beginning she would be up and about by day 7, now she's not back to what resembles her old self until day 13. Being awake is no longer a necessity as much as it is a luxury.  She finds herself in bed sleeping at least 20 hours of every day.  I find myself wondering more and more if this is how the end of life begins? 
What used to be second nature for her has now become a laborous chore. Eating, getting up to use the bathroom, spending time with us all, things that used to seem so effortless now seem so extremely tiresome.
In a way I feel like she's been lucky to not experience what most people go through with this miserable disease if that makes any sense at all. And yet I find myself calling on god a little more often then usual these days. As selfish as it may seem I ask him for more time.. So she can watch my youngest start his first day of school or see my daughter go to her 4th daddy/daughter dance.  But I also ask him one thing every single day, that when her times does come she drifts into a peaceful, painless sleep that finally gives her all the rest she's ever needed.

Thursday, July 11, 2013

Don't be afraid...

When affected by something like this knowledge is power,so please empower yourself. This is a list of some things that can help

Obtaining Medical records
Power of Attorney
Living will
Genetic testing
A therapist 




Tuesday, July 9, 2013

I will....

I will always take 5 minutes for me...
(even if it's sitting in the car)

I will always see my glass half full instead of half empty.
 (especially if it's a Dbl Tom Collins)

I will always hope for the best, yet always expect the worst.  
(So when it's good I can really appreciate it.)

I will know that when one door slams closed another will always open. 
(even if  my 10 year old is the one slamming it, and my 5 year old is opening it to chase him down....)

I will know that for every person that dies another is born.

And know for each friend you lose you gain two more.

I will know that the love I feel for my children is unconditional and reciprocal.

I will know that all things must come and go.

And that in life as in every book, their will always be a beginning and an end....

And although, we can't choose our beginning or even our ends, who we choose to love or even our friends...

I will work damn hard to make sure the middle is what we make of it and enjoy every precious minute of it...

I will always move forward and forget about the past...

No should haves, would have's, could have's, were ever meant to last.....



Monday, July 8, 2013

What's the Weight & Date?




Date                   Lbs

03/15/2012        202 lbs

Began having symptoms
Nausea
Spitting up bubbles
Hard time swallowing 
Abdominal pain
Could not drink more then a few sips at time
Everything tasted like metal

07/17/2012       158      
 Still being Misdiagnosed

12/17/2012
Cancer found

12/20/2012       129.4      

12/27/2013
Cancer staged- Stage 4/w mets to peritoneal cavity.

01/02/2013       122          

1/16/2013         114          

1/30/2013         117          

Start regimen of Folfox Chemo every 2 weeks...

02/06/2013       113.6    Chemo 1  

2/18/2013         118.8    Chemo 2

3/04/2013         120.6    Chemo 3

3/18/2013         119.4    Chemo 4

04/01/2013       116       Chemo 5

04/15/2013       121.2    Chemo 6

04/29/2013       117       Chemo 7

05/13/2013       114.8    Chemo 8
(Allergic reaction to Oxaliplatin)

Switch from Folfox chemo to only 5Fu still every two weeks...

05/28/2013       116       Chemo 9       
Started Marinol to increase weight      

06/10/2013       116       Chemo 10

06/24/2013       119       Chemo 11

07/08/2013       118       Chemo 12
Bilirubin higher then usual still receives chemo.

7/22/2013         122       Chemo 13

8/05/2013         118.4    Chemo 14

8/06/2013         119.6.   Chemo 15 Cancelled until scans from Brain MRI 
come back in two weeks.
MRI Discovered she has a brain aneurysm.

9/03/2013         117       Chemo 15 resumed

9/16/2013         115       Chemo 16

9/30/2013         112       Chemo 17

10/14/2013        120      Chemo 18

10/21/2013        115    
Admitted to hospital with Colitis 

10/28/2013        105
Released from Hospital

11/06/2013         118

12/02/2013         120        Chemo 19 
 First chemo since 10/14      

12/16/2013         122.6      Chemo 20

12/17/2013       123.          
Met with hipec surgeon who said mom is not a good candidate for the procedure.

01/06/2014        116           Chemo #21

01/13/2014
Had to have 2 teeth extracted due to infection.

01/20/2014          123.2     Chemo #22

02/03/2014                        Chemo #23

02/17/2014          123.8      Chemo #24

03/03/2014          119.4     Chemo #25 
No significant change since Dec 2013
Everything looks stable~

03/17/2014          123.6      Chemo #26

03/31/2014          125.6      Chemo #27

04/04-04/06         Stomach flu

04/14/2014          122.8       Chemo #28

04/29/2014          123.6        Chemo #29

05/12/2014.         126.6        Chemo #30

06/02/2014          126.2        Chemo #31

06/13/2014                           Catscan

06/16/2014            128         Chemo #32

06/30/2014                          Chemo # 33

07/21/2014          124.8       Chemo # 34

08/18/2014                          Chemo # 35

09/05/2014                          Catscan

09/08/2014            135.6     Chemo#  36

09/29/2014            139        Chemo # 37

10/20/2014            141        Chemo # 38

11/10/2014            143.2     Chemo#  39
        

03/23/2015            139.8     Chemo discontinued due to progression of disease.

Resources

Cancer Resources

These are some of the organizations that can help in providing answers to any questions you may have in these difficult times.


American Cancer Society
www.cancer.org

Genetic Counseling 
(Regardless of what state you live in 
Brooke Olson is a great person to ask 
any questions you have about genetic 
counseling resources & studies
area.


Creighton University
Research Coordinator
Department of Preventive Medicine
Phone: 402-280-2929


Imerman Angels
www.imermanangels.org

nostomachforcancer.org

Debbie's Dream Foundation
debbiesdream.org

http://www.cancercare.org/

If you don't already get CURE magazine you really should subscribe, it shares cancer updates and strides being made in Cancer research everyday. I've attached a link for anyone interested in a free subscription.


https://cur.magserv.com/cgi-bin/subscribe?qt=new


www.cancercompass.com

Rxusa.com
You can call or place the order online for prescriptions or any nutritional supplements just mention the "The 6th opinion" or when ordering online place in the comments section to receive a 10% discount on anything you order.

www.socialsecurity.gov/.../disability.htm


Reliablehome.com (Illinois)
provides medical products for care at home: incontinence supplies,,hospital beds,bath chairs,
Wheelchairs,walkers
Ph:847.566.0800
Fx.847.566.0876
Contact person: Judy


www.shieldhealthcare.com/
provides medical products for care at 
home: incontinence supplies for monthly delivery


Sunday, July 7, 2013

Laughter cures everything...almost.

Cindy:


So you always hear laughter's the best cure....  Well we had just found out my mom was dying of cancer and were about to celebrate New Years and to be quite honest I couldn't think of anything to smile about more less laugh about. I was 7 months pregnant and had been on an emotional roller coaster since the day I'd found out I was pregnant while sitting in my moms hospital room 7 months earlier waiting for them to misdiagnose her for the 5th or 6th time.  My sister and girlfriend drove in from a town away and with mom hooked up to an IV in my family room, we all toasted and cried not knowing if this would be our last New Year together as a family.  Everyone went to bed, my sister left and I sat in front of my computer thinking to myself what I could do to lift everyone's spirit.  Checked my email and noticed that Maz Jobrani a comedian who my mom loves mostly because he's hysterical and partly because he looks just like my brother, was coming to town. Right away, I knew I had to get tickets but looking at the date in February felt a little hesitant. You see I was due to have my baby that week and she was scheduled to have chemo that Monday. Experience had already taught us by now that it usually took her about a week to recover from the effects of chemo. But that didn't stop me I bought 10 tickets and hoped for the best.  I called the The Improv and asked for extra special seating which Stephanie, who was pretty darn awesome took care of everything herself giving all of us VIP treatment and making it a night to remember.  I also facebooked  Maz Jobrani: This is what I wrote;

Hi Maz,

Quite a while back I sent you an email trying to find when you would be in Chicago again because my mom watched a routine you did about Persians & Palestians and being Palestian herself could totally relate and has been a huge fan of yours ever since.  I was so excited to see your going to be in Schaumburg @ The Improv next week I bought 10 tickets for the Feb 8th show which is also 4 days before I'm due to deliver and was hoping if you had a chance would say hello to my mom who was recently diagnosed with terminal cancer I'm sure it would just be such a great surprise for her and would really lift her spirits if you had a few minutes the night of the show and greatly appreciated by us her children.  Thank you in advance for taking the time to read this.

Maz's reply;

Cynthia,

Thank you for the kind e-mail. I am sorry to hear about your mom's diagnosis. Of course I can say hi to her. I will be in the lobby after the show so please make sure to come by and say hi then. I would love to give your mom a hug and thank her personally for coming out.

All the best,

Maz

And he did......
I hadn't heard my mom laugh as hard as she did at his show that night in so long, I had forgotten how much I missed that sound.



Google it!!!

Cindy:
Who knew google could be your best friend and worst enemy all at the same time? Many a nights I've been up unable to sleep, a million questions in my head, yet no answers. 
Then like in the movies, a lightbulb appears above my head and I think to myself, Google it!!!
At first you start with cancer, then stomach cancer, then stage 4 cancer,  followed by cancer survivor, cures for cancer, cancer statistics ( which by the way haven't been updated in the past 5 years) cancer foods & recipes,support groups and before you know it one day has become a week and a week has become 6 months. 
 In the end you realize there only seems to be one common denominator and dissappointed you feel none the wiser. Everything you read mentions juicing, eliminating sugar, greasy foods and removing flavorful foods from your life. 
My mom has had me google everything from herbalists to witch doctors.
Every website refering you to another that'll sell you anything from vitamins to cat's claws and we're all to willing to do any of it in hope that just one thing will work. 

December 31st, 2013

So here we are a year later and I can honestly say we very seldomly ever google anything cancer related anymore. If mom wants to eat a bite of a big fat greasy cheeseburger or a bowl of sugar, all is fair game. We juiced pretty religiously for the first 6 months but eventually stopped juicing because too many fruits and veggies were going bad quicker then she could consume all of them, so now we just pick up 2 or 3 fresh fruit smoothies a day depending on how she's feeling from our favorite Chinese restaurant which is still less expensive then the $150 a week we were spending in produce. If she wants waffles for dinner and 1/2 box of homemade cookies for breakfast so be it. After over 20 rounds of chemo she's still eating more then she was in almost the whole year it took us to find out what was wrong with her.  One of the most difficult parts of this disease has been dealing with the depression aspect of it. How do you pull the one you love out of a blackhole so deep you yourself could get lost in it?
 Wish Google had an answer for that..


January 4, 2013
6:32 am

Laying in bed wondering what I can make mom today that will appeal to her while staying down all at the same time.
The last two days, she's had very little appetite even with the 20 mg of Marinol a day I've been giving her. Worsened by the fact she's thrown up at least 50% of the solid food she's eaten. 
However, I'm just glad she has managed to hold down the smoothies and the Iv hydration because it seems to be keeping her somewhat afloat. Her small frame is looking smaller these days and I've noticed her balance is getting worse, it's so off she fell once and almost a second time yesterday.  Monday will be chemo #21 after almost a month break, I'm just hoping she's feeling a little better before then and the blizzard that's been threatening to hit doesn't until after we're back home.

Saturday, July 6, 2013

Top 10 Stupid things people say....

Top 10 Stupid things people have asked or said to my mom since they found out she has terminal cancer........

1.)How long do you have to live?
2.)I wish I could lose weight like you.
3.)Why bother with chemo if your dying anyways?
4.)I'd die to have your body
5.)Where your going is better anyways..
6.)You'll be in a better place
 (to which I usually feel like saying
 "So why don't you go there first and let us know what it's like.") but my mom would probably kill me if I did.:-)
7.)At least you have time to get your affairs in order.
8.) Who are you leaving in your will?
9.) Everything happens for a reason..
10.) I wish I hadn't seen you this way, so I could've remembered you the way you were..

To poop or not too poop......

Before cancer my mom always had a problem with constipation so add to that a never ending supply of pain medications she takes on a regular basis and presto, constipation to the hundredth power.

The problem with being constipated besides the constant pain is not being able to get rid of all the toxins from the chemo to the narcotics. So we made it one of our top priorities to poop every other day at the very least.

She's been prescribed everything from stool softeners to castor oil and nothing seemed to work.  Forcing herself to drink miralax twice a day was taking away from her eating because it would give her a full sensation.

We had tried almost about everything from stool softners, laxatives, miralax, lactalose,enemas, glycerin suppositories to prunes.  

So what finally worked for us .....
We began doing a bowel regimen every other day of 2 sennecot (stool softners),she drinks 30ml's of lactalose, a fleet enema followed by a glycerin supossitory. It's not for everyone but in her case has kept her regular and from keeping all of those toxic medicines in, and of course was given the ok by her doctor.

Home Hydration {the lifesaver}.....



One of the things that has been most beneficial for us is hydration at home. 
When dealing with stomach cancer there's so much to deal with from nausea, vomitting to diahrrea, the last thing you want to worry about is dehydration.
Dehydration can lead to so many different things.. weakness, fatigue, constipation even death. So when meeting with our palliative team I brought up giving her hydration at home which was completely welcomed as a great idea.  They sent me a home health nurse within a day or two who walked me through exactly what to do one time only and it was fairly easy to learn. The same technique could be used whether she had a port or picc line.
So since January I've given her 1-2 liters of fluid a day, which has helped with fatigue especially during her chemo weeks. Needless to say no more visits to the ER in the middle of the night for dehydration and one less thing for her to worry about. It also helped with having more regular bowel movements. Yay for being proactive:-)

Waiting for Chemo......

February 6th, 2013

Cindy:
It had been almost 6 weeks since mom had been diagnosed and we had been patiently waiting to start chemo. Every minute feeling like an hour while every hour felt like a day.
Amazingly enough their is sometimes a lot of red tape to get through before you can even get chemo. although it can make the difference between life and death, Insurance still has to approve it , you have to wait for a pump, lab results... it seemed endless. But today was finally the day they were going to give her the poison that would begin to kill the cancer.  The poison's name "Folfox" it was made up of three major ingredients 5fu, Leucovorin, and Oxaliplatin. Before the chemotherapy she was given Aloxi for nausea through her central line to keep her from vommitting.

After the Aloxi she was given decadron(steroid) and then a drip of Leucovorin  and an infusion of oxaliplatin. These are given at the same time and take about two hours.

When those were done she was given an injection of 5FU into her port line followed by an infusion of 5FU over 46 hours. This part of the treatment was given over 46hrs through a small portable pump she was able to take home with her and would have to remember to bring back each and every time she received chemo. The pump is used to give a controlled amount of the drug into your bloodstream over a set period of time. On the third day the home nurse arrived just as it began beeping and removed the bag which only weighed about 2-3lbs, but after 3 days seemed to be weighing my mother down. And that's how mom's chemo that doctors said would likely be indefinite, began.....

You've got the Big C :-(Now what?

What do you do when you find out you or someone you love is dying?

Well let's see......

Cry
Google "Cancer"
Think why me?
Cry some more
Think about the life insurance you never bought because you thought you'd live forever.
Think about the organs you planned on never donating to science.
Decide, what's less expensive cremation or burial? {and if your my mother, go to the funeral home and negotiate your own funeral.
Don't forget to laugh followed by some more crying 
Decide who you'd like at your funeral
Get mad at the world 
Stop smoking!!! that stuff will kill ya
Lose your faith 
Google "cancer survivors"
Get hopeful
Find your faith again
Put god on speed dial
Fight for your life
Make amends with loved ones
Cry some more
Make memories
Try not to cry about the time you have left
Enjoy every minute
Accept the inevitable
Start smoking again because in the words of my mom " I'm dying anyways, right"?
Laugh about good times B.C 
{ before cancer }
Make everyone promise to love each other and keep Sunday dinners alive after your gone.
Never leave the house or go to sleep without saying "I Love you" like it's the last time.
Buy life insurance that makes you promise to stay alive at least two years.
Hey, It gives you a goal.
Find a group of Cancer warriors & caregivers who lend their support & knowledge
Don't hold back, speak your mind and don't forget to cry.
Most importantly remember to live life to its fullest and because tomorrow's not promised.....Make sure you leave nothing  unsaid. It's not the things we did that we end up regretting but the things we didn't do that tend to disappoint us.




Friday, July 5, 2013

Medications or other things to ask your doctor about...

These particular medicines have been beneficial for my mother throughout the past few months. Please
seek medical advice for more info on them from a medical professional.


Marinol-  has helped increase her appetite and with nausea.

When it comes to weight loss some other things we have used to keep weight stable are:

Benecalorie 
 
344 calories

&

Boost Plus
360 calories 

Some of these nutritional supplements may be covered completely by insurance with a Doctors Script. In the state of Illinois BeneProtein & Boost Plus are covered by Medicaid.. If  it's not covered in your state I've found this company to be the least expensive to date...

Rxusa.com
You can call or place the order online for prescriptions or any nutritional supplements just mention the "The 6th opinion" or when ordering online place in the comments section to receive a 10% discount on anything you order.

Xanax-Helps with anxiety

Remeron- Helps with depression and can also increase appetite. 

Magic mouthwash-helps with pain caused by cold sores.

Biotene oral products
Toothpaste, mouthwash,spray for dry mouth.
Are sensitive on gums and great to use while on chemo for dry mouth.


Acyclovir ointment- can be used topically for external sores on lips.  Sometimes doctors want to order oral antibiotics to treat these sores but too many antibiotics can lead to C dif.

( c-dif is the most serious cause of antibiotic-associated diarrhea and can lead to pseudomembranous colitis, a severe inflammation of the colon, often resulting from eradication of the normal gut flora by antibiotics. Ask your doctor about acyclovir as a first line of defense.





Tuesday, July 2, 2013

The clue

April 2012

Cindy:


Since late April 2012 my mom had been complaining she was throwing up everything she ate.  It was strange though, because it didn't look like regular throw up it just looked like spit if that makes any sense?
She would constantly say how everything  tasted funny and how she constantly felt like she was sucking on a penny.  Food no longer carried any flavor for her and she was slowly edging away from eating for fear she would throw up.  The pounds were flying off and found myself buying her a couple pieces of new clothing every other week because nothing was fitting her quite right. So like most we tried to self diagnose, ruling out the flu because this had been going on now for probably about a month and when she had last gone to the hospital they had said it was nothing. We thought this could possibly be some sort of acid reflux and so she took Prevacid for the next 14 days.  Obviously not working and my mom still feeling horrible we decided to go back to the nearest hospital ER where the doctor's ran all kinds of tests and proceeded to diagnose my mother with Pancreantitis, gastroenteritis aka the flu, and possible inflammation of the appendix.  Three days later, unsatisfied with this diagnosis, I packed my mother into the car and drove her to the hospital I worked at which is supposed to be one of the best.

We started all over again MRI, CT, ultrasound the works. This time we walked out with a diagnosis of gastritis and a small aneurism in her celiac artery. I mean no matter which way you look at it this was still a shitty hand, but at the very least we knew what kind of cards we were holding this time, we thought.


Monday, July 1, 2013

Cancer Warrior & Caregiver's Arsenal


Of course everything on this list is optional...
Yet we have needed everything on this list at one time or another and thought it would be nice to pass on and give someone else a head start in making some part of this a little easier....

Throw up basin for home (stainless steel kidney shaped basins work the best for us and are the easiest to keep clean and sanitize}
Throw up cup for on the go
{preferably stainless steel because their easier to clean and with a screw top really helps}
Kleenex {antibacterial}
Hand sanitizer
Hot packs { Your hospital should stock them make sure to ask for a few each time you go in, trust me you won't regret it. They really helped alot when dealing with neuropathy from chemo.}
Warm air humidifier {when platelets get low bloody noses are very common}
Hard candies { lemon heads, peppermints or ginger chews tend to help with nausea}
At least one memory foam pillow and a blanket or sweater for chemo those rooms get very cold. Don't forget to pack a snack,
Hospital food is terrible and totally overpriced and at some point you will get hungry.
Sugar free Gum


Juicer 
Ninja food processor 
Grocery delivery company *usually runs about $7 for them to pick it, pack it and deliver it.  If you take into account the gas you waste and the precious time you've lost you'll realize it's so worth it!
Bottled water or Water home delivery
{Just because when getting chemo tap water may not taste as appealing.}

Lysol wipes & disposable face masks
 {because when undergoing chemo immune systems are at their lowest}

{For constipation usually caused by painkillers}
Fleet Enemas
Glycerin suppositories
Tucks medicated wipes for sore bums
& Pull up underwear for adults for the times you can't make it to the bathroom in time.


Oral hygiene for sensitive gums and dry mouth

Biotene toothpaste
Biotene mouthwash 
Biotene mouth moisturizing spray

Ask doctor about magic mouthwash for mouth sores that are very common during chemo.


While dealing with our mother's weightloss and trying to maintain her weight, these have been some of the items we've used that have been quite helpful.

Weight boosters
Boost plus  {contains 360 calories}
Benecalorie {contains 344 calories and can be added to just about anything for some extra calories.
Scandi Shakes 3oz added to 8oz milk makes a 600 calorie shake
Harmless Harvest Raw coconut water 
Is great for hydration (whole foods)
Thick it (used to thicken the the consistency of beverages to make it easier to drink)

7 day Medication dispenser
Notebook to journal
Binder {to save everything given to you from the pathology reports to the hospital bills it comes in handy when applying for dissability or Medicaid}
Dayplanner
Thermometer
Waste basket and liners

Bathing
Dry Shampoo
{When getting out of bed and washing your hair isn't an option}
Picc line cover "shower soc" 
Port cover "Shower shield catheter"
Body wipes

Lotion
Lubriderm 
Benadryl cream
{for flaky and itchy skin sometimes caused by chemo}

Curos protectors
  • {Can be placed on port or picc lines they help kill the organisms associated with catheter-related bloodstream infections,
  • keeping them always protected and clean.} Many hospitals are introducing these to prevent infection, especially in oncology and ICU where immune levels are low.