I'm on NPR!

Remember the blog by Leroy Sievers on NPR I told you about? It's called My Cancer and Leroy posts something insightful and thought-provoking each day about living with his disease. A few weeks ago, he proposed this to his readers -- Finish this sentence: My cancer... He received 390 replies. Including mine.

I don't know what made me do it. Well, really, I do. It was all those posts about how cancer has been a "blessing," and "awakening," and "taught me so much." F that. So, I weighed in on the subject.

A few days later, I received an e-mail from Leroy's assistant letting those who had responded to the post know that they wanted to put together a photo gallery of the people who replied. Would I like to send a photo?

Sure! Why not?

Well, yesterday, Leroy posted his photo gallery. 390 replies to the blog, who knows how many photos submitted, 32 photos in the gallery. Guess who was selected? Swear. Scroll down to yesterday's post!

Business as Usual: Catching Up Here

Much has happened and been planned in the past week. At least I feel like a lot has happened and been planned. But, in thinking about writing it down... eh. Business as usual for me. I don't think it's compelling reading at all.

Want to start with a status update? Ducky.

I remain at 60 mg of prednisone and the freaked out lady doesn't fit the profile. I'm doing OK on it. My biggest complaint: I feel really, really good; and it's artificial. It's because of the steroids that I'm content. And it ticks me off. See, there's the bipolar aspect, right there. I wonder what I really feel like. I haven't had any roid rages. I'm definitely a bit jittery. I see the weight, although no one else seems to. My appetite, while increased, is not ravenous. I'm not overeating. Although, my resveratrol intake has increased over what it was in the winter and spring. But, that's probably a good thing, right? (Indulge me here, would you?)

On Monday, my platelets were 103. Down from 166, but certainly respectable and treatable. I received my Avastin infusion. That made me feel a bit more secure, but I wanted my Ixempra, too. New Doctor says she wants to wait until after my CyberKnife treatment in mid-July as she is trying to reduce the risk of another platelet crash. This does not sit well with me. I want another course of chemo now. I'm already a month off my schedule. I have an appointment with her next Tuesday, at which I am going to lobby for an infusion prior to then.

I had my simulation and CTs done for mapping of my CyberKnife treatment. I'm scheduled for July 14, 15 and 18. They not only made a mold of my body, which I am to lay in during treatment, they also made a mask for my face because they don't know how far up my neck they are going to have to go. It's a flexible plastic thing and I can breathe just fine in it. But it gets strapped down. Tight. It's immobilizing and will be uncomfortable to have on for a couple of hours. Whatevs. I'll deal.

Sister #2 is going to drive up from Maryland to accompany me to the first two treatments. I'm really excited about it. Sick, this is. But, I'm looking forward to hanging out with her as I don't see her nearly enough and when I do, it's always when our enormous herd of family is around. Now I have her to myself!

EGCG
I've added a new alternative therapy to my daily regimen. This always makes me nervous because there is never much, if any, clinical data behind supplements and herbs. I cannot know for sure whether something may truly be beneficial to my disease or possibly destructive to my treatment. However, I have found some loose information that indicates that EGCG may, at least, not hurt me. I intend to talk it over with both My Oncologist and New Doctor to confirm. I suggest anyone adding alternative treatments to their regular medical treatment do the same.

Metastatic Breast Cancer News Round Up

• From US News and World Report, information about a study of vaccine therapy in metastatic breast cancer. There were only 19 women in this study and vaccines have proven rather tricky to make work in this setting. Here is the abstract.
• A press release on the initiation of a Phase II study of CR011-vcMMAE in advanced breast cancer, which targets a protein known as glycoprotein. Just a press release announcing the company with the molecule is continuing to study it. No news or analysis here. Just, hopefully, eventual progress.
• Business publication, Barron's has this article about the manufacturer of sorafenib. The company is currently enrolling metastatic breast cancer patients in a number of Phase II trials.

Addendum
I forgot this last post, and it's too cute to pass up. After we ordered The Kid's birthday cake, The Kid and I were thinking about future birthday cakes and what they might say. The Kid decided that for his ninetieth birthday the cake should read: Wipe His Hiney, Jason's Ninety! What I wouldn't give to see that cake.

Steroid-Fueled Round Up (Blog Bonus: Compelling Lead In)

So many accomplished writers, despite lauded and prolific careers, were tortured by demons that challenged and shaped their work. F. Scott Fitzgerald had his booze (and a few heart attacks); painful illnesses led Hunter S. Thompson to take a gun to his own head; crushing depression drove Virginia Woolf to laden her pockets with rocks, slog into the River Ouse and drown herself, to name but a few.

Certainly, I do not place myself in their elevated realms of accomplishment or in their desperate depths of despair. But I do wonder if steroids inject not just a jittery, bi-polar, plumpness into me, but also a jolt of inspiration to my creativity and writing. Such as they are.

My head is brimming with thoughts and I need to siphon them off. I want to siphon them off. Figured I share them all with you.

Women Living with Cancer Study
Being at the advanced stage of disease that I am, after being so heavily treated with, what, nearly ten different chemos? Plus having brain involvement, I am not the ideal clinical trial candidate. More precisely, I am not the ideal Phase II or III study candidate. I would be limited to Phase I studies where the key objective is to see if the potential treatment in question does or does not kill the patient. (Pass.)

But I am eligible for other forms of studies and I just joined one that I am very intrigued with. It focuses on exactly what I asked every investigator I spoke with at the YSC Conference earlier this year: who is looking at long-term metastatic breast cancer survivors? How are they coping? What more can be done for them as they live longer without ever being cured?

UCLA's Jonnson Comprehensive Cancer Center is conducting an extension of the Women Living with Cancer study (no link to be found?!) under the direction of Dr. Annette L. Stanton. The purpose is to learn more about the experience of women who have been diagnosed with advanced breast cancer. The anticipated benefit: Information gained from the study may contribute to understanding how women live with and adjust to having Stage IV breast cancer and may guide the development of supportive interventions for women with metastatic cancer. Yippee!

As a potential participant, I filled out an initial questionnaire about my health history, mood, coping behaviors, social relationships, personality, sleep quality and physical symptoms. I also collect saliva samples twice a day over three days. Now that I've been accepted, I am being asked to think about my experiences living with breast cancer and write about the topic for 20 minutes on four separate occasions that I will schedule with the study coordinators. I received a packet with four sealed envelopes containing the topic I need to consider and write about. I cannot peek until I schedule. Three months after completing my writing assignments, I am going to complete another questionnaire, similar to my initial questionnaire and collect saliva samples again.

I'll be visiting this topic again once I start my writing sessions. Oh, I forgot to mention, I get $80 for completing the study. What do you think: shoes or shoes?

Please pass this information along to any other Stage IV breast cancer women who may be interested in participating. The project coordinator is Carissa Low and she can be reached at carissal at ucla dot edu.

Happy Thoughts
As previously mentioned in this blog, The Kid turned nine last week. Every year for his birthday, I put a cute (to me, anyway) message on his cake. For example: "What Fun, The Kid is One!," and "Yahoo, The Kid is Two!" You get the picture.

This year, The Kid and I went to Coldstone to get his cake and when I was asked what to put on the cake, I paused. I hadn't even really thought about it. No worries, though. Without missing a beat, The Kid chirped up and said, "What a Time, The Kid is Nine!" I nearly shed a tear on the spot. My big boy. A small gift I'd been giving him his whole life, and now he is my accomplice in the project. I am still smiling.

My Love is a devout admirer of the day lily, the bright orange summer perennial that lines many of our rural roads. We had some at our previous home, but we also had a lot a deer. Deer are also devout admirers of day lilies and they never failed to eat the buds before we ever saw a bloom. Now that we are country gentry and the deer tend to stay away from our open yard, I gave a small gift to my Love. Last year, I dug out all the plantings and rocks around our mailbox and planted day lily seedlings there. Now when My Love leaves and returns home, he is greeted by his own garden of day lilies. It's a small gesture, but I know it makes him happy.

I leave you with this. Don't pay so much attention to the video. Just, you know, listen to the music and lyrics and go with the Universe. It's all good.

Possible Mix-Up in Administrative Services, The Universe

iIs anyone missing their day? You know the one, the one where everything goes right? Anyone?

If so, I'm sorry if your hopes and dreams went awry today, but there was apparently some sort of clerical error in The Universe today and I somehow ended up with your day. I was unable to locate appropriate contact information to correct the mistake, so I had no choice but to take it. If it's any consolation, I did use it well.

• My drive to the CyberKnife facility was easy, without incident and completed in record time. While I did spend a little more time observing the structural details of the George Washington Bridge than I would have preferred, the traffic was mostly modest and flowed rather well.
• I arrived early for my simulation. So, I enjoyed a nice roast beef sandwich on cranberry bread and some hummus and pretzels in the hospital cafe. While dining leisurely, I IMed friends/colleagues and kept in touch with my daily routine.
• A call from one of my new nurses contained the ASTOUNDING information that I had 166 platelets on board. Nine hours later, I am still in shock and for much of the day had to fight the urge to call her back and ask her to re-run the test. Holy crap. I get Avastin on Monday!
• While being simulated -- getting a mold of my body and face made -- the technician asked what kind of music I liked. Anticipating that their music library contained only easy-listening fare intended to keep freaked out cancer patients from losing their S on the spot, I told her -- Harder rock. Not classic stuff. Now. She put on some Incubus for me!
• Before leaving the facility, I learned that my treatment had been scheduled. I kid you not, it starts on July 13th. Weeks earlier than anticipated, and during a time when The Kid is already planning to spend time with his grandparents. So, with The Kid with my folks, and me on Long Island, it looks like My Love gets a mini-vacation.
• I've been hoping for rain. My New Jersey countryside has been hot and parched lately. This afternoon, I enjoyed rain through my sunroof and later, my favorite nature show: a glorious thunderstorm.
• I ate half a sleeve of Thin Mints. (Is that bad?)

Oh, and just so you know. I did consider the fact that this day was most truly, truly mine. But, I'm having a difficult time accepting that. So I'm just going to enjoy it.

YES, ALREADY!

I got the CBC drawn today, OK? No, I do NOT know the results. I'm asymptomatic and that's all I care about right now. So, bite me.

I am bound for the CyberKnife facility tomorrow so we can run a simulation. Next week, CTs of the neck and thorax. Then... we schedule treatment. That's a story. Right now they are saying first availability is in August. Hello, what? We will be working on that, be assured.

Roses in My Path?

I learned today that St. Theresa reads and influences content of The New York Times.

Personal Health Columnist Jane Brody has an article today that discusses the very form of therapy that has kept me relatively stable, able to maintain a mostly normal lifestyle with a good quality of life for as long as I have. I am apparently part of a small but growing number of patients who have chronic cancer. When one treatment ultimately fails, we move on to the next. And the next. Repeat as needed.

Additionally, I would be remiss if I didn't pass along this information from Well Columnist and Blogger Tara Parker-Pope about my favorite recreational compound. Do its benefits never end?

So I start in a good place today. Say it with me: Hope is a powerful thing.

Triple Negative Breast Cancer in the News

I have a number of happy things to post about and a few challenges. I want to go into details on all, but I'm tapped for time right now. So, the high points to hopefully be hit with more depth shortly:

• We celebrated The Kid's ninth birthday this weekend. I got to see my son turn nine.
• My Love and The Kid ran a 5K on Father's Day morning. Not their best race, but The Kid came away a raffle winner and got four box tickets to our local baseball team. He's stoked.
• After infusing to 74 platelets on Friday, and starting a new ITP drug, I have no idea where I am now. I was supposed to get a CBC drawn yesterday, but never had time. I should have had one this morning, but am coordinating new employees and interviews, so I haven't made time for that yet, either. I'm also supposed to call my doctor to schedule an appointment. I guess I should get on that, too.

In the meantime, this just came across CNN and I thought the hundreds of readers who devour my incisive writing, thoughtful analysis and devotion to researching all things breast cancer would find it interesting. I hate to disappoint. I have a reputation to uphold.

Brave Decisions

Since learning that I have a BRCA1 mutation, all three of my sisters have also been tested to learn their BRCA status. I don't know if it's good news or bad news that only one of my sisters came back positive for BRCA1, too. Sister Number Three, the youngest at 28, has inherited the same increased risk of developing breast cancer and ovarian cancer as I.

It's a miserable situation for anyone to be in. But my heart breaks in a more delicate way for her. Like tiny bits of fine crystal that sing the moment they shatter and scatter. She, who is in a happy relationship but unmarried, who wants very much to have children of her own, and has slogged through some challenging personal matters over the past several years, is now facing a potential -- but not forgone -- breast cancer diagnosis. And she's closing in on my age at diagnosis.

She's now in the position of having to make some of the toughest decisions of her life in order to maybe save her life. Stay aggressively vigilant? Undergo prophylactic mastectomy? Reconstruction? What kind? What about her ovaries? Do they stay or go? What will she look like after surgery? How will she feel about her new body if she undergoes surgery? How will this affect her relationship? Bilateral mastectomy means no breastfeeding should she have children. That's a joy she'll never know. A miss. Lots of missing things.

The good news is that the chick is rather resourceful. She quickly found Bright Pink, an organization that provides support to young women who are at high risk for breast and ovarian cancer. They have been a phenomenal resource for her as she navigates this new and difficult path.

And she has made a decision. She will undergo bilateral mastectomy with reconstruction. It took my breath away when she told me. The enormity and finality of the decision... and she just stepped up and claimed it. Courageous, is the only word I can think of to describe her.

GammaKnife: Take 3; Platelets...Take a Powder

My gamma knife procedure went smoothly. The team was on its game and I was in and out of the medical center in about six hours. I spent the rest of the afternoon and evening sleeping. The residual effects of fentanyl and ativan will do that to you.
I'm left with two small goose eggs on the back of my head and a couple scabs on either side of my forehead. And hopefully two fried up little tumors that are withering in anguished death throws as I type.

Friday was chemo. Or, more accurately, it was supposed to be chemo. Turns out I had two platelets. How I went from 119 platelets last week to two a week later is anyone's guess. I just love all the unanswerable questions of hematology and oncology. It's just one big fat guessing game. Keeps it interesting.

My guess, which we all know is based on nothing other than pure gut feeling and absolutely no medical expertise, is that the Ixempra is finally throwing its weight around. I'm hoping the new chemo is as good at decimating tumor cells as it is at platelets.

So, after an infusion of IV Ig, I was off to an infusion center where I was given platelets. I boosted nicely to 42 and am hoping that I hold onto them. In fact, I am hoping that I continue to build them. I don't know how I'd stand another go-round on steroids.

Feelin' Groovy

So: Today.

I feel really great. And that's strange to me. But, yeah. I feel kind of perky and happy and at ease with life. Oh, I know cancer is standing right behind me breathing down my neck. Jerk. But today, ignoring its threats seems as easy as a summer daydream. I am choosing not to question why I feel so... normal. Especially since I'm having gamma knife tomorrow.

Doo-too-doo! Ignoring cancer.



News
Today USA Today tells us about a study that replaced barium (which is just F-ing disgusting) with whole milk (which is yummy when mixed with Quik) as a contrast for X-rays. Turns out the radiologists couldn't tell who drank what by looking at the images. This article (scroll down) and a gallon of Quik-infused milk are coming with me to my next set of CTs.


Stuff
During Memorial Day weekend, My Love catapulted me off the back of a jet ski. After skipping across the surface of the lake, rapidly decreasing my velocity from 40+ mph to zero mph in about three seconds, I bobbed gasping to the surface minus my eyeglasses.

So. I purchased a new pair yesterday. I think they are rather rock-and-roll. But, I fear that they may appear to some (who are less fashion forward than I) as belonging to a middle-aged woman who feels the need to make a statement with her eye wear as she feeds her many cats and curses men under her breath. Whatcha think?

Finally, thanks to Peter for this awesome little time waster. IT EVEN MAKEZ TALKIN BOUT CANCR KIND OV FUN AN SILLY.

How Am I Feeling? However Will Make You Happiest

I do it all the time.
I do it here, which is stupid frustrating and makes my writing weak and deceptive. It keeps me from posting.
It's not full on lying, really. But, if I crumble, it will scare people. People other than me. And I can't have that. I can't cause more pain than I already do. So, yeah, I'm doing just fine.

Lots on My Mind. And Shoulders.

I've been making appointments and chasing down medical coordinators since I got my scans back. The urgency I feel appears to be important only to me. I have managed to get my gamma knife procedure booked and I will be getting my brain fried on Thursday. While the fentanyl lollipop sounds fun, it's not enough to distract me from the fact that the titanium frame will be screwed onto my head for a third time.

On the supraclavicular node front, an appointment for CyberKnife therapy remains out of reach. I had an appointment with the radiologist, who said we could definitely hit the nodes. Since then, it has been in the hands of a single insurance coordinator, who is allegedly working on getting approval from my insurance company. I spoke to her this morning and she says she expects approval before the end of the week. That's over two weeks from when I had my appointment! And, once it comes through, I am going to have to schedule a CT and then wait a few days after that for them to map the procedure. This is taking entirely way too long. Makes me feel like taking some people to task.

So, to kill time, I've been reading lots cancer news to try and find those nuggets of hope that keep me thinking that someday there will be something for me. I liked this and found this interesting.

Oh, and on the Good Things list, I am adding:

• Team Hill turning in another fantastic 5k team effort. The Kid handily defended his title as top 11-and-under runner at the Run of the Mill.
• Fabulous weather for hanging out with friends and family eating brunch
• Warm breezes and the scent of peonies that made napping on the couch following the 5K and brunch extra delightful.
• Summer. (sigh...)