Supreme Court & Myriad Ruling

The Supreme Court unanimously ruled Thursday that genes that occur naturally in the body cannot be patented. This means that Myriad’s expensive stronghold on the diagnostic BRCA gene test is over.  Myriad can no longer file patent infringement suits against other companies who perform the BRCA screening test. Which means the cost of the test will likely come down since Myriad will no longer hold a monopoly on it. Yay!

NY TIMES: The central question for the justices in the case, Association for Molecular Pathology v. Myriad Genetics, No. 12-398, was whether isolated genes are “products of nature” that may not be patented or “human-made inventions” eligible for patent protection.

Myriad’s discovery of the precise location and sequence of the genes at issue, BRCA1 and BRCA2, did not qualify, Justice Clarence Thomas wrote for the court. “A naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated,” he said. “It is undisputed that Myriad did not create or alter any of the genetic information encoded in the BRCA1 and BRCA2 genes.”

“Groundbreaking, innovative or even brilliant discovery does not by itself satisfy the criteria” for patent eligibility, he said.

IBT: Today, the court struck down a major barrier to patient care and medical innovation,” Sandra Park, an American Civil Liberties Union senior staff attorney, said in a statement. “Myriad did not invent the BRCA genes and should not control them. Because of this ruling, patients will have greater access to genetic testing and scientists can engage in research on these genes without fear of being sued.

YAY!!!! So happy to hear this news!

Wonder if my Myriad bill for $4100 (I was told the test costs $7000, my insurance would pay the bulk and I had to cover $700, yet I got a bill for $4100) from last November will finally be processed correctly — and maybe for less? A girl can hope!

Sick in Hawaii = Bummerpants

I wrote this one on May 21st:

We landed on Maui on Friday after my last chemo. I thought all would be well, but I was fighting a slight soar throat when we left. I’ve been so vigilant about staying away from germs, but maybe I let my guard down during my last week (I’m sure the 5 hour flight from SFO to Hawaii didn’t help).  All I know is that this nasty cold has taken hold and is wreaking havoc on my body presently.

Since we landed, I’ve pretty much been rendered to the bed or to a cot (aka lounge chair) poolside. On Sunday, I went to the gym, walked one mile and did my PT exercises. Then, later that same day, I thought I’d be fine to golf 18 holes. What? It’s resort golf, Paul pretty much drove me up to every single one of my shots — but, as it turns out, that was WAY too much.  I over did it BIG time. On Monday, I was down for the count. Literally. I think I managed an hour by the pool, then it was back to bed for me. I couldn’t move.

It was pretty scary to be honest. I’ve not felt that beat down the entire time during chemo. Everybody told me it’s “cumulative” and it will bite you. But they all told me it’d be my second to last, or last chemo, that would be the worst. Well, as always, I’m the exception to the rule, it’s the week after my last chemo that’s been horrific for me.

Every single inch of me hurts. My bones ache (like as in, I can’t hold my kindle upright for too long, b/c my wrist bones start to ache at their core), my teeth hurt, my scalp hurts, my skin aches, and did I mention my bones hurts? Like my ribs hurt — so every time I move, it’s just friggin’ painful.  Who knows — maybe the sun is making everything worse. But in my past experience, the sun always makes things better for me. A little vitamin D goes a long way to make me feel better

So fingers crossed this head cold of mine and these all-consuming body aches of mine will pass very, very soon. Ugh.

(PS – happy to report that my sickness only stuck around for a few days. I was feeling like myself again by the end of the week! Yay!)

Last Chemo – Recap

Hi everyone! We’re back from our two week escape post-chemo.  I wrote a few blog entries while in Hawaii but didn’t feel like editing and posting them. So keep in mind that the next few entries were written a few weeks ago.  Once I get all of these up I’ll start posting real-time again. xoxo

Here I am — one week out since my last chemo. I’ve had a lot of firsts and milestones to acknowledge (maybe not celebrate).

At my last chemo, I woke up like I did on any other given chemo Tuesday. With a deep sadness and tears welled in my eyes.  As always, I looked over to Paul and said, once again, “I can’t possibly do it again. I don’t want to do it again”.  Ever the supportive husband, he kissed me and said, “You can do this. This is the very last time you will have to do this. Ever.”

My final chemo was bittersweet. I hadn’t had a massage prior to my last 3 chemo’s because Lisa was enjoying a well-deserved vacation. So, this, my final chemo, started with a relaxing, lovely massage. Then, off I went to Jelly for blood work and Garrett for my final consult before my final Benadryl nap. What’s crazy is that it was all sort of sad and anticlimactic at the same time. I felt that I was losing a HUGE chunk of my life and my new cancer family, yet I was gaining my independence again (whatever that means).

I’m proud to say that Garrett and his team asked me to be one of the new faces of his practice (my pic and bio will appear on his website). It just so happens, that the professional photographer for their website was coming in on my last infusion day. So it was a BIG day. Can’t you just picture it, I’m totally zonked from a massage and Benadryl. I wake up and try to re-apply my make-up and sit for a photo shoot! Ha! I was a hot mess. I planned my outfit very strategically so that I had three separate looks for the photographer. Sadly, I was in such a daze — it was all I could do to let her just take my picture — forget about transitioning looks! End of day, I was wearing my Stella & Dot breast cancer awareness scarf in the photo. I’m happy about that because I was wearing it the day of my mammogram when this entire journey began. It felt fitting to wear it as chemo came to a close.

The entire day was surreal. I don’t think there were any other patients in the infusion room that day. So it was really quiet in the office. Paul and Tasha did a lot of hootin’ and hollerin’ as the very last drops of Taxol dripped into my veins (See Paul’s blog post — I am super out of it, it’s pretty hilarious!).  Then, during my photo shoot, everybody sort of came out of the wood works to congratulate, high five and hug me.

My clearest memory from the photo shoot was of Lisa literally screaming at me “You’re done!” and DAMN, that felt F’ing good! I know she was partly trying to get me to loosen up in front of the camera — but it was all so bittersweet to me — every single day since last December, I’ve counted on Smith Integrative Oncology — the entire team, to help me get by. Everything from a paper cut (which is actually no joke when you’re undergoing chemo) — to my 10 day hospital stay. They’ve been there for me. Through think and thin. My new family.

Now, our regular dates are done. I’m happy to break up with them on the one hand, but I’m sad to know that I won’t see all of these wonderful people on a regular basis.  They saved me. Together with Paul, all of these people saved me.  They made me find the strength to go on when I had no idea that any strength was left. They made me want to put on a cute outfit and pair it with some cute Stella & Dot each infusion day so that I could make them smile.

All I can say to SIO, Paul, and all of you who have supported me along this road, is a heartfelt THANK YOU. I don’t know what else to say. I know my fight isn’t quite over yet, but you all carried me this far, and for that, you get a giant THANK YOU.

xoxo

Taxol got the last laugh

Well, we are here in Hawaii on our restorative trip. My only plan is to relax, go for walks, read books, sun myself and golf.

This is the milestone trip I’ve focused on since I started chemo. I’m incredibly happy that I made it to this point and I’m in Hawaii in one piece! Well sort of anyway….

Sadly, taxol had the last laugh. As you know, my hair grew quite a bit during my taxol infusions. But a week or so ago I noticed that the front/top of my hair was thinning. I reasoned with myself that maybe my regrowth was coming in curly, so I can see my scalp bc my hair is curling in on itself. This rationalization only lasted a few days for me.

I kept taking pictures of my had and examining them for hours on end. Paul thought I was crazy. Absolutely nutz. Then, it happened..

Yesterday as I studiously applied sunblock in our condo before heading down to the pool — my hair fell out. Yup. I sprayed my hair/scalp with SPF 30 since I could clearly see patches of my scalp. Then I tried to sort of rub the sunblock in. Much to my dismay, a rainfall of white hair descended onto my feet. I called Paul over and showed him. Another sweep of my head sent tons more whispy fine baby hair floating to the floor. Ugh.

I’ve heard stories of other women holding on to their eyebrows and eyelashes right until the end of taxol, only to lose them after their final infusion. I knew I was on that path already since my eyelashes and eyebrows grew in a month ago and then fell out a week ago. But I never, in a million years, thought the hair on my head would go too.

So, here we are in Maui and my hair is falling out. What’s a girl to do? I planned all my outfits assuming I’d have a little bit of hair. I planned all my head coverings assuming the same thing. Now, I look like a balding, elderly man who is holding onto the hair around his ears and in the back. What’s it called? Chrome dome? Yes, I think that’s it, chrome dome.

F that. I’m not going to look like that on this trip. I’ve waited too long to get here. So, yesterday, Paul made me an appt at the spa and we shaved my head — again. It wasn’t too emotional this time around. Although I feel badly for the bride who was getting her wedding makeup done in the chair next to me! Christ, can you imagine the story she’ll tell for the rest of her life, “The day I got married, some cancer chick and her husband had their heads shaved in the chair right next to me. On my happiest day of days, I had to bear witness to this sad thing.”

Maybe it was just her rehearsal dinner? I hate to think I brought down a happy bride on her big day.

So, here are a few pics of Paul and I with our new haircuts. I’m getting a lot of weird looks at the pool. And I need to rework all my outfits to accommodate the bald look — but all in all — I’m not going to let this little set back turn our trip upside down. I’ll just buy a few more hats. It’s all good.

Xoxo

Horoscope for Wednesday, May 15 (the day AFTER my last chemo)

I happened to check my horoscope the morning after I finished chemo. This isn’t something I regularly do.

Here’s what is said:

May 15: Catalogue, sort and file away for good. Mental Mercury orbits through your twelfth house of completions until May 30, helping you let go of all things outmoded from your recent past. Consider it a spring-cleaning and perhaps a two-week mourning period. You’re a sentimental soul and while you’ve indeed outgrown these things, there’s always something emotional  about saying goodbye.  Working with a therapist, coach, healer or support group will expedite this process. Don’t be afraid to reach out for guidance.

Powerful, huh?

Later today, we are off to the Carneros Inn for a quick celebratory overnight. Then we leave on Friday for Hawaii for a few weeks. This horoscope is spot on — I’ll be trying to relax, enjoy and spring clean my body, mind and soul for the balance of the month. Thankfully I have a fabulous husband, a psychotherapist and the BAYS support group in place already.

We’re going to be busy packing, unpacking, re-packing and traveling over the next few days.  I’ll post all about my final chemo in a couple of days. In the meantime time, check out Paul’s post about it!

Inspiration – Part 4

Well, it’s been awhile since my last inspiration post. No time like the present!

On the eve of my final chemo, I wanted to share with you a note that was, and is particularly near and dear to my heart. It comes from Tracey S. Yes, the same Tracey who buzzed her hair off when I started chemo. As you will see, she gave me some amazing advice early on.

Whenever I feel exhausted from smiling, reassuring and comforting other people about my illness (yes, this actually happens WAY more often than I care to admit and, yes, it’s F’ing exhausting — just as an aside, if this blog teaches you nothing else, please learn that it is not cool to cry in front of your friend who has cancer b/c you feel so sad for her. I promise you, that is not helpful in the least. It’s happened to me a number of times and it does annoy me to have to comfort you. I have only so much energy and it’s got to be spent fighting this cancer, not holding your hand! OK the aside is done now!), beat down by insurance or stressed about the minutia — I hear Tracey in my head, telling me (with her southern drawl that I adore!) to live my life like nobody’s lookin’! So that’s what I try to do.

October 19, 2012:

Wow. Read your blog today and unexpectedly started sobbing like a baby when I got to the part about Sya. I think that is her name. Like body shaking sobs. Completely shocked myself as I tend to stand outside my body and be practical observer of all things. Including myself. I think we may be much the same in that way. I feel you all the way down here in TX and you are always on my mind. I almost died once when I was about your same age and I will tell you the story some day. Mine was different than yours as I was told immediately that I could die at any moment by every doctor and nurse I came across and this went on for a while. I even had an ICU nurse yell at me once because she didn’t think I was taking my impending death seriously enough and I thought fuck you, I can do whatever I want because I am about to die:) Everyone else around me (except my husband) fell apart and I spent my time trying to make everyone else feel better. It was a bit exhausting. So I think I feel a bit what you may be feeling. The shitty thing is that this is happening to you but also a good thing can come of it. I do what I want now without worrying about how “they” will feel about it. I don’t mean that in a bad way, I just mean in things that won’t hurt other people, I get to decide what my life looks like. The other thing is I have no real fear of death anymore which allows me to really live. Like feeling complete and utter joy when simple things happen like the weather is great, the food is awesome, silly jokes that make you belly laugh and the gratefulness that I have my husband as my partner on this journey. It makes me happy that you will most likely feel the same way when it is all over:)

Love,
t

PS. I just cracked open a bottle of good red right now and am drinking with you!

Tracey, I thank you so very much for reaching out to me so many months ago, and for continuing to check in on me regularly. I hope that you know that this email helped define me during the past 8 months, and it will continue to for the rest of my life! I no longer fear dying, and that, alone has changed me (I hope in a good way!). I also feel alive in a different way than I ever have before. You helped me to see that life is worth living and that going through the motions isn’t good enough when you’ve gone through something like breast cancer.  Thank you for opening the door to allow me to work through all of this heavy stuff without being scared. I love you! xoxox

Penultimate Chemo!

Yesterday was my next to last chemo. I’m sort of numb about all of it. I doubt I’ll really comprehend any of this until a week or two after I’m all done. Still trying to take it day by day. But I’ll admit that in my quiet moments, it feels damn good knowing I only have one more week of chemo to go!

Everything went really well yesterday. I got my monthly lupron and B-12 shots before the infusion. Dr. Smith gave me extra Benadryl even though we dropped the Taxol dosage back down to 150 (yay for extra benadryl and yummy naptime). We picked up fro yo on the way home (this has become somewhat of a tradition for us) and then I got straight into bed and slept until dinnertime. Good day all in all, egh?!

We dropped the dosage back down to 150 for this past chemo and will leave it at 150 for my final infusion next week as well. We’re doing this because I started to show signs of neuropathy in my hands and feet (and we’re more or less caught up from the two weeks I missed while in the hospital). In an effort to prevent the neuropathy from developing further, I’m drinking my nasty glutamine powder twice a day, everyday. Hopefully that, together with the B-12 will help keep it at bay or even make it go away.

Last Friday we had dinner with Andrew and Katherine who were in town for a wedding. It was great to see them and hear all about their own wedding planning. Oh, how I do love weddings — they are so much fun! It was also my niece’s 8th birthday. I can’t believe how big she is. Bob, Sarah, Paul and I all went to the Giants game (my niece is a Cinco de Mayo baby and the Gigantes were playing the Dodgers — who wouldn’t want to go watch that game?) to celebrate with her. I think she was beyond excited when, in the 7th inning the jumbotron flashed a Happy Birthday message to her AND kids got to run the bases after the game. We didn’t stay for the running of the bases part, but I saw a few pictures. She was beaming from ear to ear!

Hope everyone has a great week!

xoxo

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