Changing back~

Cindy:

It's been a week since the wedding and mom has barely gotten out of bed or eaten anything for that matter. She's been throwing up almost everything she eats and has lost her appetite even though she's still taking Marinol 3x a day. She had decided to go back to her original oncologist for fear that having changed hospitals is why she's feeling horrible. I've tried explaining to her that she's still receiving the same regimen except now the nausea and steroid medicine that used to be push are now oral. But she thinks the new facility may be doing something differently and that's the reason she's feeling and getting worse. I feel like no matter what I say to her these days it's getting harder and harder to convince her so I've already contacted the original Oncologist and we'll be returning to her care next week. Along with everything else that's going on her picc line has been giving her problems so giving hydration is taking longer then usual. Between that and her not being able to move her bowels in the past few days she's been in a lot of pain and experiencing a lot of anxiety. Hoping once chemo resumes next week these issues will begin to resolves themselves and she'll get some relief. I haven't updated her weight recently because we haven't weighed her so she isn't worried about that too, but I'm afraid she's lost probably another 10 lbs since her last weigh in. We'll see at her next visit..

Same Love

Cindy: 

This week was a crazy week with Connie getting married this past Sunday.

Mom tried to be present and awake for everything she could but the past few weeks without chemo have really taken a toll on her. She slept all day Saturday in hopes that she would have plenty of energy on Sunday and if I say so myself she did a pretty good job at it. We all cried, laughed and danced having a really beautiful time for the first time in over a year. We forgot about everything else and really enjoyed every single moment. And when Connie and mom danced there wasn't a dry eye in the house.  I haven't seen my sister or even mother this happy

In such a long time it was just so nice to have been able to have been a part of it.

My kids constantly ask me who my favorite is or which of them I love more and my answer never changes " I love you all the same, but different."

What I realized that night is that although Love comes in many shapes,forms and colors as I looked around the room I couldn't distinguish even one. It was just a room filled with nothing but unconditional LOVE.

Connie & Bets,

Thanks for letting us be a part of your love story every single day.

One of the best nights of my life....I win.

Keeping our untraditional theme going, the girls had flower boys and a ring girl :-)

Genomic Testing~Foundation One

There is so much to learn when it comes to stomach cancer. One of the best ways to learn more is to be genomically tested which helps in finding targeted therapies for you or your loved one's specific cancer. Belonging to a great Stomach Cancer group with veteran families who have undergone genomic testing helped in guiding our family in where to go. I had a ton of questions so I contacted them directly and asked if I could add this info to our blog. I wanted to pay it forward for those of you who don't know what steps to take next. For even more info go to:

www.foundationmedicine.com

 

The following info is directly from their page and can really answer a lot of the 

questions you may have. Also please make sure to check out the video at www.foundationmedicine.com it's pretty awesome in explaining exactly what they do.

FAQs

How do I get FoundationOne?

FoundationOne must be ordered by a physician, so the first step is to talk to your oncologist to see if he or she feels you are a good candidate. You can also contact Foundation Medicine for more general information.

 

How long does it take to get results?

Your physician will receive a report approximately 14-17 days after your tumor specimen is received in our laboratory. Click here for more information about understanding the results.

 

Will my insurance cover the test?

Foundation Medicine will bill the insurance company for FoundationOne, as the provider of service. Typically, it takes 60 to 90 days for the insurance company to respond to Foundation Medicine’s claims. During this time you may receive an Explanation of Benefits, this is not a bill and will explain the coverage initially offered by the insurance company for FoundationOne.

If the insurance company denies coverage, Foundation Medicine works on your behalf to attempt to obtain coverage and will assist in pursuing appeals on your behalf to minimize the financial burden when appropriate. We may also contact your office for assistance in the appeals process.

 

Click here for a more detailed explanation of billing financial services.

 

What is FoundationOne?

FoundationOne is a tool that helps you and your doctor reveal the DNA alterations that are driving the growth of your cancer and identifies treatment options that may be available to you based on the alterations in your unique cancer.

 

Who is eligible for the FoundationOne test?

FoundationOne is available for any patient with a malignant solid tumor. It may reveal additional relevant treatment options to consider for patients based on the molecular profile of their tumor or may help provide additional information for patients who are searching for clinical trial options.

 

How might FoundationOne help me?

FoundationOne helps your physician reveal the DNA alterations driving the growth of your cancer and identify treatment options that may be available to you based on the alterations in your unique cancer which may not have otherwise been considered. Your physician can help determine if you are a good candidate for FoundationOne.

 

Does FoundationOne predict response to chemotherapy or the likelihood of recurrence?
No, FoundationOne was not designed to predict response to chemotherapy or recurrence. FoundationOne helps match the genomic alterations present in a tumor with specific targeted therapies or clinical trials.

 

Who can I contact if I have additional questions?
FoundationOne Customer Services Team: (888) 988-3639

• Hours of operation: Monday through Friday, 8:00 am EST – 6:00 pm EST
• Fax: (617) 418-2290
• Email our support team.

Please have your account number (found on your bill) and insurance policy number (from your insurance card) available.

 

In regards to billing, I was explained they will bill the patient’s insurance directly, however they do not yet have enough experience with the insurers to know which ones will and will not pay at this point. The list price for the test is $5800.00.  Financial assistance is available.

Please contact www.foundationmedicine.com for further assistance. 

 

 

 

Follow up..

November 6th, 2013

Wednesday

Back at the hospital today for Mom's follow up. Doctor increased her morphine  to 145 mg because her pain is getting harder to control. In the meantime she's been barely able to keep her eyes open all day and has been nauseas & throwing up since we got here. Just waiting for results from her labs drawn this morning...

Just Yesterday.....

Cindy:

October 25th, 2013

As I sat next to my husband in his suit and tie, who I hadn't seen in almost a week, while I myself wore yoga pants and a old knit sweater feeling way too comfortable . We sat in front of our daughter's classroom in silence waiting to have our parent/teacher conference. Exhausted from the chain of the past weeks's events. In the past week my father in law had gone through open heart surgery 3600 miles away, while mom had been hospitalized with a colon infection. Luckily family and friends rushed to chip in to help us take care of our kids and home while he was working and I was in the hospital with her. We sat waiting for what seemed like forever, like the sleep deprived parents you see in the movies, too tired to even speak to even each other. When the 3rd and final teacher finally called us in we sat down expecting her to tell us what every teacher in the past has always told us about our oldest daughter. 

Starting with her pre-k teacher when she was 3, saying that just like her grandmother she likes to always be in charge and is always the social butterfly of every class.

As her teacher talked about core values, I sat there reminiscing to almost 7 years ago remembering when they were in 

pre-school, Con was 4 and Vic's was 3 and we were sitting in two little chairs just like we were now talking to their teacher. She began "Con seems to doubt himself when it comes to making an independent decision and looks to his sister for insight as to what to do next. "Where Vic is the complete opposite and will not only tell you what your doing wrong. But will also lend herself to give her classmates and myself unsolicited advice as to how to correct it." 

I remember not begin able to help but laugh, thinking to myself that's Vic being just like mom. Unlike, her teacher who didn't find it quite so endearing or amusing. 

Flash forward to the future, her 4th grade teacher began telling us how of all of her students, our daughter in particular really stood out as someone who was wiser beyond her years. Always helpful, charismatic and intune towards what others are feeling. She took the time to share with us a comment our daughter had made recently while her class was discussing the subject of inequality. 

Vic had said " It doesn't matter what color you are purple, green or yellow or who you choose to love, were all human beings with feelings and that's all that matters.

Her straight A report card made me proud, but knowing that my daughter lives her life being the best,most loving human being we've raised her to be, makes me even prouder....

October 28th,2013

It's so hard to believe today, my beautiful son turned 11. Since my children were born, unlike other families we've never really had traditional birthday parties. Except for maybe one or two where we invited our children's friends over when they were very small.  Instead over the years we've chosen to take a different route, giving them 3 wishes on each of their day's which is our way of making their day only about them and not catering to others. This year with mom being in the hospital all week and me not being home I worried it would put a damper on my son's day.  For the past few weeks he had been writing and revising his list, changing it from day to day.  It started with for the first year ever, him wanting to have a laser tag party with 6 of his friends.  Which Connie and Bet's had so graciously volunteered to do. But as he noticed mom feeling worse and worse over the weeks he slowly changed his list changing his first wish to all of us just being able to be together that day. His second wish was a huge chocolate cake and his third wish was every Swap Land Skylander figure made, to add to his growing collection. 

I on the other hand was just hoping mom would be well enough to be discharged by his birthday, and luckily she was yesterday. So we went ahead and made sure to get all of Con's wishes x'd off his list and spent the night eating and laughing, as if though nothing was at all different this year and for few hours even I believed it. Mom found the strength to sit at the table with us and even ate two pieces of chocolate cake, thank god for Marinol..

October 29th,2013

So after being released this past Sunday she's still not eating very much, but then again she's been sleeping a lot. They put her on a chemo break until mid November to give her some time to heal. This morning we're seeing her oncologist for a follow up visit. Hoping she has the energy to get up and go..

October 30th,2013

So we made it to the visit this morning and chemo got pushed till after thanksgiving. In the mean time she came back home and has been sleeping all day. Thank god for family and friends who are all too willing to visit and help and keep her entertained.

October 31st, 2013

She finally made it out of bed today for a few hours. Long enough to sit with all of us tasting sweets and making keepsakes for the big day.  Telling old stories and joking while we all sat together was so nice. Quite honestly I never thought I'd see and was so happy to be a part of. I know you all get tired of my always taking pictures, but I promise you one day you'll thank me.