July 2014

Nearly 5 years ago, Dr. Laudi told me the statistics and my chances of living for 5 years with Stage IV breast cancer.  Well, I am still here!!!

I live with a cancer.... however, I feel stuck. I love my Oncologist, but I feel his focus is on comfort, on having hair, on managing pain.  I feel he has accepted that he is trying to stay a step ahead of the game, but I feel he has never set out to "cure it". I don't want to simply manage pain. I hate that pain is a telltale sign that a new tumor is growing. I want this cancer gone! I want a lifetime...

I am on my 7th drug/chemo in five years. I am told there are not many more drugs/chemos I can take. I want a CURE! I have been talking to many people and maybe I am coming to the end of the road with my doctor and my clinic. I think it's time to get another opinion, seek a fresh perspective. I am not done living!

Joy and Happiness are choices that come from the inside out. Sharing my joy and happiness with you:

Happy Birthday, Olivia Joy!

Olivia Joy was born 4 years ago today! 

Cancer will always be bittersweet for me.

With all the fear and doubt it brought to my life,

it also carried this precious gift to my family.

Olivia has stolen the hearts of many-

mine most of all.

I am forever grateful for all her "moms"

who shared their breast milk with her and helped her grow

for the first 18 months of her life!

Happy 4th Birthday, Olivia Joy!

Angel Foundation Kids Kamp

My family has been blessed by Angels! We are grateful to the Angel Foundation, an organization here in Minnesota formed to help parents with cancer and their families with non-medical expenses such as rent, gas, food, etc. They also provide support to the children in families touched by cancer. They hold fun events for families to attend together and also camps and teen events. For the past three years, Natalie and Larissa have attended The Angel Foundation Kids Kamp. I am grateful for all the love and support the staff and volunteers put into this. When a parent has cancer, it feels very scary and lonely at times. I am grateful that Natalie and Larrisa were given this opportunity to connect with other kids who share this journey.

This year Natalie was a Teen Mentor. Thank you, Angel Foundation. 

Here is this year's video!!

http://youtu.be/6Qc1RsOnrfQ?list=UUvkhaGiSI0llGNqVtS1b5rQ


PS: The Angel Foundation is an awesome group! To learn more about them:

http://www.mnangel.org/about

If you ever want to donate money to help people with cancer- please donate to them!

http://www.mnangel.org/donate

June 2014

In Minnesota, our winters get long. We just spent 6 months mostly indoors, so we have to make the most of our summers. I worked on spring cleaning and painted Natalie and Larissa's bedrooms. I noticed new pain in my left shoulder that I chalked up to painting, but the pain increased and I started to need more pain meds, so Dr. Laudi ordered an MRI that showed more tumor growth in my scapula (shoulder blade).  He wanted me to start radiation to help with the pain, but I want to give the Doxil time to work, so the plan is to have 2-3 rounds of Doxil, then have a PET scan. While my chemo works, my family and I will play.

Here is some of our June Fun:

Doxil: Dose 1

I have to admit, I'm sad to start chemo again. The break was nice. This will be my seventh line of treatment. Doxil has the same list of side effects as many other chemos: hair loss, nausea and vomiting, low blood counts.  As with plain Doxorubicin, I also get orange pee for a few days. 

The Results are In

Have you ever gone to the doctor looking for an answer only to leave with more questions?  I have. 

Though I spend a lot of time in oncology clinics, I don't really understand how they work. What is the goal?  Is it to just keep me sated and comfy until I run out of time OR is it to go into this battle like a warrior and kick some cancer ass?  I wonder about that.  Many times, I feel my oncologist is walking into my exam room like a person doing improv, without a definite plan, like he is thinking on his feet, which in reality may just be the way he thinks, but that approach leaves me wondering and fills me with questions.    

I don't pretend to be an passive patient with an introverted husband.  I am not afraid to stand up for myself and Mark researches breast cancer like my life depends on it... and maybe it does.  I am being worked up for a type of therapy I remember Mark asking about on one of my very first clinic visits almost 5 years ago.  We were told I had to try other therapies first and, as you know, I did.  

Some scientific info from the FoundationOne Website:

About The Test

Foundation Medicine Test: FoundationOne (Test) was developed and its performance characteristics determined by Foundation Medicine, Inc. (Foundation Medicine). The Test has not been cleared or approved by the United States Food and Drug Administration (FDA). The FDA has determined that such clearance or approval is not necessary. The Test may be used for clinical purposes and should not be regarded as purely investigational or for research only. Foundation Medicine’s clinical reference laboratory is certified under the Clinical Laboratory Improvement Amendments of 1988 (CLIA) as qualified to perform high- complexity clinical testing.

Diagnostic Significance/Lack of Significance of Reported Biomarkers: Foundation Medicine’s Test identifies alterations to select cancer-associated genes or portions of genes (biomarkers). In some cases, the Test identifies biomarkers that lack detectable evidence of cancer- associated alterations. These alterations (and, in some cases, lack of alterations) are reported to a patient’s treating physician in this report (Report).

Qualified Alteration calls: An alteration denoted as “amplification – equivocal” implies that the FoundationONE assay data provide some, but not unambiguous, evidence that the copy number of a gene exceeds the threshold for identifying copy number amplification. The threshold used in FoundationOne for identifying a copy number amplification is five (5) for ERBB2 and six (6) for all other genes. Conversely, an alteration denoted as “loss – equivocal” implies that the FoundationONE assay data provide some, but not unambiguous, evidence for homozygous deletion of the gene in question. An alteration denoted as “sub-clonal” is one that the FoundationONE analytical methodology has identified as being present in <10% of the assayed tumor DNA.

The Report incorporates analyses of peer-reviewed studies and other publicly available information provided to Foundation Medicine by N-of-One, Inc. (N-of-One); these analyses and information may include associations between a molecular alteration (or lack of alteration) and one or more drugs with potential clinical benefit (or potential lack of clinical benefit), including drug candidates that are being studied in clinical research. Additional information from N-of-One is available on its website at www.n-of-one.com

After two bone biopsies and seven weeks of waiting, we now have a 25 page report from FoundationOne. The results showed 10 alterations. Dr Laudi said there are currently 2 clinical trials that target these genes, however, they are not offered in Minnesota.  One is in Pennsylvania and the other is in Arizona with the possibility of an additional clinical trial at the Mayo. As with all clinical trials a person has to meet the specific trial criteria.  For example, some trials limit the numbers of previous chemos or other types of treatment a person has had, such as radiation.  They don't want too many variables. 

Due to an increase in bone pain in my left hip and right shoulder, I will start the Doxil (lipid encapsulated Doxorubicin) and get an MRI. Dr. Laudi is calling doctors in Pennsylvania and Arizona and setting up an appointment at the Mayo.

Nitrous Oxide :D

 

About a year and a half ago, Olivia was running around as usual, when she fell and chipped one of her front teeth.  Since this tooth was saving a spot for her permanent tooth, her dentist advised us to leave it alone and "just watch it." 

 

During this time, we watched it discolor slightly.  We watched and reported a cavity that appeared to be forming.  Then, she developed an abscess and her dentist said there was no way- and really no reason- to save this tooth,

so today she got it pulled. 

Sounds like the makings of a traumatic experience for a little girl,

but it wasn't

Thanks to nitrous oxide.

 

 

 

 

 

Olivia's got gas! 



 

(Wish I had the soundtrack to share)

 

There is something innately magical about Laughter,

something spiritually joyful,

something gratefully happy,

something that dissolves the rigid lines around our seriousness and worries,

something that diffuses and scatters negativity,

something that not only points at the elephants in the room-

or the elephants in our lives or the elephants inside us-

but creates a space, a lightness

for all to be seen and put in perspective,   

something that feels silly and simple, deep and profound,

a beautiful celebration of life! 

Listening to Olivia giggle and shriek with such wild abandon

 -unable to stop herself, not even trying to-

 and just being present as she surrendered

to all those somethings bubbling up inside her,

 spilling out into the world,

I had to laugh... 

 

 

 

Olivia's smile.

 

 

 

Did Olivia care that she got her tooth pulled?

Nope.

She liked the giggle gas!

 

 

 

Plus, we found some S. Pinky Treats on the way home.

 

 

 

 

 

 

 

 

Wherever you are at this moment-

May giggles be with you.