Moving at our OWN pace

Two weeks ago today we left for the last day of school.  Seems like an eternity, although not a restful one.

Today was the first day I woke up with nowhere to be, and nothing to do.  Our first mandatory stop is swim practice at 5:30 PM.  So I sit, nursing a cup of green tea, and trying to convince myself, on my health quest, that it is just as good as the caffeinated hot cocoa I have been drinking for years.

snooze-and-lose

This morning I woke when my body told me it was time – somewhere around 8:15.  What a blessing to open your eyes because you are ready.

I tended to the garden.  I watered my tomatoes, peppers, eggplant, cucumbers, and I even picked a ripe zucchini.  I watered the flowers on my deck and I marveled at the calm beauty of the neighborhood at 8:15 on a Wednesday morning.

Not my plant - but you get the idea!
Not my plant – but you get the idea!

Now, to all you teacher critics out there- I recognize ten weeks of unscheduled time is a gift.  I understand its not “the norm,” and I AM grateful.  But to all you who are realists, I try not to be much of a complainer, but this schedule we are keeping is far from a walk in the park.

Even as I reflect just on yesterday, and then the last week, I can easily find myself overwhelmed.

schedule

The rhuematologist confirmed that the Celebrex is necessary.  On the up side she said, at least the liver seems to be handling it well.  Yep, on the up side I need to worry about my almost 10 year-old’s liver?  So we have about a 50/50 split, and that’s just the doctors we like – touting the pros and cons of Celebrex.  Take her off.  Leave her on.

celebrex100mg

I love them all, but ultimately the pain decides for us.  This child is accustomed to pain so deep that the 20 laps of butterfly she swam Monday – when I expected her to be barely able to lift her arms Tuesday – caused her to need only “an extra stretch.” But the pain in her wrist right now – that can knock her to her knees.  Celebrex it is.

So I read articles from the oncologist last week about “angiogenesis” http://childrenshospital.org/newsroom/Site1339/mainpageS1339P356.html

I try to absorb medical jargon about why the Celebrex helps the pain – but doesn’t cure it.  And why it may even help prevent the Arteriovenous Malformations (AVM) from flourishing.

I read an article she gave me on “prophylactic thyroidectomy” and its benefits in Cowden’s Syndrome patients.

I read about “Long Chain Fatty Acid deficiency” and heard about the possible need for a muscle biopsy to assess carnitine levels.

worried mom - FBI

I am an educated woman, but I sometimes wonder why I seem to spend more time in medical journals than educational ones.  Did I miss my calling somewhere along the line?  Probably not, but “necessity is the mother of invention.”

And yesterday as she was examined by the rheumatologist there came the confirmation that the right wrist is “thicker” than the left.  A month and 3 days after what we thought was the “injury” to the wrist, it isn’t better.  Not really at all.  So she said, definitely get an MRI.

We are on it.  11AM Saturday.  We already cancelled the birthday party we were going to.

She wants a copy of the report – ASAP.  She expects they will find something.  I went to make my six month appointment, and she told me to hold off until after the test results.

I look at the piles on my desk.  Better since the shredding is over.  I glance at the order confirmation for my new driver’s license, and can’t help but wonder where the old one ended up.  I look at a beautiful collage Meghan sent to the printer last night as I was working – just to make me smile.  I look at the books for the “Teacher Effectiveness Training” I will be attending tomorrow, and the flyer with the itinerary for the Disney trip.  Its right alongside the Costco list, and the original copy of the Myriad genetics report that I don’t have BRCA 1 or2.  Obviously I still have a little more work to do down here.

Monday I went for my MRI.  The one that checks my spleen.  Next Tuesday I have the appointment to find out if I can keep it.  Already covered the endocrine surgeon, the gyn oncologist,  the I just need the breast surgeon and the plastic surgeon, and my oncologist to have their visits.  It’s easy to forget that I am even part of this Cowden’s Syndrome mess.

Lessons Learned from my daughter
Lessons Learned from my daughter

My focus is on the beautiful one with the curly hair, who gives the best hugs in the world.  It will be a long week – again.  So for today, I will try to slow it down.  The sun is shining.  It’s July.  And we don’t have to go to work OR the doctor today!

Restoring some of my faith…

I am of great religious faith, but of really little faith lately in government and politics.  Corruption abounds.  Decisions befuddle me.

myriad 4

I watched with great interest this week as the Supreme Court heard the case of Myriad Genetics, looking to obtain a patent on the BRCA1 and BRCA2 genes because their work was largely responsible for encoding these genes that drastically increase a woman’s risk of breast and ovarian cancer.  BRCA has been in the news alot lately because of Angelina Jolie, and I hope her ordeal has served to increase awareness of genetic diseases and their potential consequences.

myriad 1

BRCA is not the gene affected in my family.  In our house its PTEN, another gene that when mutated greatly increases the risk of breast, thyroid, uterine, kidney, skin, and other cancers.

That however, is not the point.  So many people missed that this case was even in the Supreme Court, and maybe I would have too – before PTEN entered our lives.  But, genetic mutation or not  – the implication that a company could PATENT a human gene, and by doing so essentially block out research from any other company or individual is downright frightening to me.

My body, my genes, my cells, or anything else a part of me do not belong to any company.  My body is a gift to me from my Creator – plain and simple.  I care for it the best way I know how.  I seek out natural and medical cures where each is appropriate.  Between my daughter and I we see about 15 doctors regularly.  We weigh out their opinions, and we make our decisions.  We replace them if they don’t meet our needs.  This is a freedom that is inherent in this country.

http://www.nytimes.com/roomfordebate/2013/06/06/can-the-human-blueprint-have-owners/permitting-ownership-of-genes-stops-research  ( An interesting “before” article)

The thought that a company could patent the PTEN gene, and by doing so, essentially own the rights to a part of my body – AND , even worse restrict the already under-served research for this rare disease had me flat out outraged.  I have already had breast cancer.  I have already had a double mastectomy.  I have already had a hysterectomy.  I will be 40 in November.

myriad 3

My daughter will be 10 in August and potential thyroid cancer looms large in front of our faces.  She will one day have to face her own breast and uterine cancer risks.  I can only pray that there will be some groundbreaking research before its her time.

Thankfully – earlier this week I received an Email from my older sister moments after the Supreme Court handed down their UNANIMOUS decision, an excerpt of which is below.

Respondent Myriad Genetics, Inc. (Myriad), obtained several patents after discovering the precise location and sequence of the
BRCA1 and BRCA2 genes, mutations of which can dramatically increase the risk of breast and ovarian cancer. This knowledge allowed
Myriad to determine the genes’ typical nucleotide sequence, which, in
turn, enabled it to develop medical tests useful for detecting mutations in these genes in a particular patient to assess the patient’s
cancer risk. If valid, Myriad’s patents would give it the exclusive
right to isolate an individual’s BRCA1 and BRCA2 genes, and would
give Myriad the exclusive right to synthetically create BRCA cDNA.
Petitioners filed suit, seeking a declaration that Myriad’s patents are
invalid under 35 U. S. C. §101. As relevant here, the District Court
granted summary judgment to petitioners, concluding that Myriad’s
claims were invalid because they covered products of nature. The
Federal Circuit initially reversed, but on remand in light of Mayo
Collaborative Services v. Prometheus Laboratories, Inc., 566 U. S. ___,
the Circuit found both isolated DNA and cDNA patent eligible.

Held: A naturally occurring DNA segment is a product of nature and
not patent eligible merely because it has been isolated, but cDNA is
patent eligible because it is not naturally occurring. Pp. 10–18.

 

I follow a group on Facebook for Young “Previvors,”  a term used to indicate women dealing with genetic diagnosis that will greatly increase their risk of cancer.  They  give me hope with their strength, that one day when my own young “previvor” faces inevitable tough decisions, there will be young women around to support her.   This link was taken from their Facebook group.

http://www.washingtonpost.com/politics/supreme-court-rules-human-genes-may-not-be-patented/2013/06/13/9e5c55d2-d43d-11e2-a73e-826d299ff459_story.html?hpid=z1

myriad 2

I can sleep a little easier today, even as Paul Offit continues to swear that ALL vaccines are safe and effective, and we should NOT take our vitamins.

http://philadelphia.cbslocal.com/2013/06/15/philadelphia-physician-dont-take-your-vitamins/

And even as I get a little queasy about the protections issued to Monsanto and their genetically modified foods, I have to feel a little better.  This week – the Supreme Court got it right.