South Africa to North West Houston: Empowered with Information

Winning a scholarship from the Conquer Cancer Foundation to attend the American Society of Clinical Oncology or ASCO Annual Conference in Chicago earlier this month turned out to be a godsend.  I had no idea that I really needed to be there and figured that I wouldn’t win an award, until I got the message that it was on!  To accept the award you basically have to agree to be there from the beginning of the event all the way through the very end participating and then disseminating the information you receive when you get home to your constituency.  No problem.  I talk to survivors from Alamo Breast Cancer Foundation referrals, CanCare Support Network referrals, Young Survival Coalition or YSC as a State Leader referrals, host my own YSC F2F or Face 2 Face Support Group in NW Houston, receive referrals through Facebook, and friends helping survivors connect to information they need.  And you know what?  They didn’t even know they needed to know the information.  I am always talking about that concept so I shouldn’t be surprised that it keeps happening to me.

Before I even arrive, I start asking my networks of advocates, “Who’s going?”.  And you know what?  I really only knew of one person who was going and that was Sandi our President of Alamo Breast Cancer Foundation and I was thrilled to get to spend time with her.  Plus, since it was my first time to attend ASCO I didn’t have all the cool invitations to pre- and post events and parties until Sandi added me as her guest.  Together we had a fantastic time learning about new technologies, nonprofits and groups of support that were interested in meeting with Alamo’s advocates through their Patient Advocacy Program held at the annual San Antonio Breast Cancer Symposium.  We had a blast.  We were the Sandi/ys.

ASCO was held in Chicago and I hadn’t been there in exactly ten years when I had the opportunity to visit for my birthday, so I was excited to see the City again.  There were more than thirty thousand oncologists and doctors in attendance presenting the latest in research and breakthroughs in all different types of cancer.  It was amazing.  Of course I had to register for the two sessions that I couldn’t miss and as it turned out, there were additional costs for each session.  The first was on Spirituality and Oncology and the second was on Building Bridges in Philanthropy.  Just my cup of tea and I still didn’t spend my entire scholarship!  I met Drs. Jimmie and James Holland and little did I know that Dr. Jimmie Holland had just turned 85 years old and she was a pistol!  I loved this lady and had know idea when I was talking to her that she would then lead the presentation and then be swarmed with cameras afterwards.  She was just the little lady who sat in the front with me before the session started…  Of course, then I find out that it was her husband that trained the doctors who then went back to South Africa and ultimately launched the African Organization for Research and Training In Cancer or AORTIC Conference!  I say this with glee because I was recently asked to speak on Advocacy in Rwanda for the Women’s Empowerment Cancer Advocacy Network or WE CAN Conference launching in Rwanda in September of this year with Houston’s own Philippa Kibugu-Decuir who founded the Breast Cancer Initiative East Africa or BCIEA which provides the resources and link to those affected by breast cancer in Rwanda.

It was at the ASCO President’s Event at the Field Museum in Chicago when I ran into Dr. Julie Gralow who we all know and love within the Breast Cancer Community because of all the work she does empowering patients in areas of the world with limited resources with WE CAN.  It was great to get to know her and get a better understanding of the three-day conference I’d been invited to attend and speak on Advocacy and Fundraising.  It was Jimmie that wanted me to introduce her to Dr. James Holland and making the introduction seemed like it was meant to be, because it was.  I figured they knew each other, but they did not.  Not yet.  Dr. Gralow urged him to speak at the WE CAN Conference so that all the new and young doctors could get a better understanding of how far they’d come and he kept talking about seeing children heal within the four days we would visit because of what he saw and how they were being treated differently.  She urged him to speak but he was not interested.  He had his loyalties to AORTIC Conference in November and once Dr. Gralow left we continued the conversation.  Finally, I offered to film him sharing his message so that we could then, take it to Rwanda and present it to our audience and after a continued conversation, he AGREED.

Just like sharing and connecting information that empowers women with cancer from the States to South Africa makes a difference, so does sharing the latest in Hot Topics from ASCO to the Community of Houston on Saturday, June 29th from 9am to Noon at the Cypress Creek Christian Community Center aka The Centrum located at 6823 Cypresswood Drive, Spring, TX 77379.  Registration and breakfast starts at 8am.  Dr. Camacho from St. Luke’s will present a stunning overview of how we are all working together to support Cancer survivors in general and not just breast cancer survivors.  Then, Dr. Giordano from MD Anderson will talk about the latest in male and female breast cancer hot topics announced during ASCO.  Then, we will end with a dynamic Survivorship Panel discussion including Dr. Oliver Bogler from MD Anderson and his wife Dr. Irene Newsham who together had the same breast cancer at different times.  In addition is our very own founding ABCF Houston board member and metastatic survivor Jody Schoger who co-founded #BCSM which is a breast cancer support group held monthly on twitter, plus Amber Gillespie who represents young women everywhere from the Young Survival Coalition when she was diagnosed at 26 years of age.  Keep in mind that you will be totally surprised at the things you don’t know that you don’t even know!

The Inaugural Community Update is a manifestation of the time and energy of Houston’s own ABCF board of survivors and caregivers including Betty Sommer, Bonner Cutting, Jody Schoger and myself.  I came back from Project LEAD last year having just been introduced to the ladies of Alamo and wondering why in the world Houston, of all places, didn’t have it’s own Community Updates for Breast Cancer Survivors, Caregivers, Social Workers, Friends and Families in which to learn about the latest announcements and breakthroughs in breast cancer research!  So, we created the event and then had to cancel it when people’s eyes would just glaze over when we tried to promote it to media and survivor support groups.  We are all really confused as the lack of response, but vow to continue the crusade.  If you are interested in learning more about the latest in research on breast cancer and how it may affect you, please join Houston’s own ABCF by becoming a member of ABCF at http://www.alamobreastcancer.org/  There we have a tab on the site for Houston that also has more information.

Please help me continue to Advocate for a future without Breast Cancer by Empowering local Houstonians with education through a dialogue of the latest Hot Topics from the ASCO Conference.  If you are in Northwest Houston, join me on Monday, June 17th from 7-9pm at La Madeline located at the 19710 Northwest Freeway, Suite 100, Houston, TX for my own personal support group where the topic is always one-on-one support for your needs.  We will figure out how to reach more survivors as more information will be released this year at the San Antonio Breast Cancer Symposium in December, so we’ve secured Dr. Fuqua to share the latest Hot Topics for Houston in February 2014.  Thank you.

Looking for Juno?

Coming home today after an interview and then a luncheon with a new friend, I felt so horrible that I went straight to bed and passed out.  What is going on with me?  I never get sick.  I never have any issues except for that pesky cancer years ago…  Then, I start putting all the pieces together:  1.  This morning while brushing my teeth I almost puked something from my dinner last night!  2.  I couldn’t quit belching and seemed to have a serious case of indigestion that started yesterday.  3.  Last night after I took Tamoxifen, I immediately got a serious case of the chills feeling as if I was about to get the flu.  4.  I swear I had a fever last night. 5.  And what is up with this nasty cough and tickle in the back of my throat?  6.  And weird pulses and funky headache?

Waking up this morning, I was worried about feeling good enough to finally meet the recruiters client, but I felt good enough to go.  I arrived to the destination early and drove around the area checking it all out, when I felt green around the gills and finally stopped to get a bottle water and took a few bites from a low-sugar protein bar that made me feel good enough to smile as I walked inside the client’s building.

Afterwards, I was headed to my favorite place we all know as Tiny’s to show my friend around for her first time as we talked like girlfriends for more than two-hours.  But I still felt green – just lethargic and sub-prime.  As I left, I texted my cycling team that I would not make it tonight for our first meet and greet and ride because I was not feeling well.  Then, I put the pedal to the medal and drove home.

Arriving home around 3pm, I turned on the TV in my room and quickly fell asleep.  At 4:57pm I woke up watching Juno, the movie that made me feel so uncomfortable while watching it at the movie theater with my parents in Austin just months after I returned from Geneva.  If you haven’t seen it, let me tell you that I still feel as if they took a few pages out of my own journal.  There is a couple and the wife, Vanessa is looking to adopt a baby and they find Juno who is sixteen years-old and pregnant who is looking for someone to adopt her child.  Juno chooses this couple to adopt her baby, until Vanessa’s husband decides he wants a divorce and states that he’s called an attorney and already found a loft to live.  In this one scene he goes from postponing painting the nursery to finally telling Vanessa that he never said he would be a good father.  In the end, Juno still wants Vanessa to have her baby and she becomes a mom with the little baby boy in her arms.  Intently watching the movie, I am feeling deeply connected to the whole theme.

Then, as I am checking email via my phone in bed, there it is.  An email from Dr. Schoolcraft’s office sending a copy of all of my records from 2003 when I couldn’t have my own children because of a translocation between chromosomes 8 and 18 so we tried IVF to harvest any of my own viable eggs.  Shaking my head and laughing at the coincidences that are pure God at work, I smile knowing that Zoe is ten years old because I adopted her soon after the failed process.  After clicking on the file it takes a few minutes to finally appear on my phone so I can start reading it because it is 52 pages long.  As plain as day it says that my chances of finding a viable egg were small if non-existent.  Shaking my head, I wonder why I was so stubborn to go through this process?

Then, the questions start to make sense to my brain:  Did the IVF process have anything to do with my breast cancer diagnosis six years later? Did my original translocation have anything to do with my breast cancer diagnosis?  From the NIH website on Chromosome 8 it is stated that rearrangements (translocations) of genetic material between chromosome 8 and other chromosomes have been associated with several types of cancer.  This is why I have an appointment next week with Dr. O from BCM to discuss my genetic issues and how they affect my short and long term treatment plan.

Also because when I look at my spreadsheet of life, I had finally become consistent in taking .5 mg of Tamoxifen for the past ten days and now I was experiencing extreme side effects all of a sudden and out of nowhere.  As I finally tried to eat something for dinner, I felt nauseous, which never happens, until I finally belched which scared me, because this is exactly how I felt on chemotherapy.  But then, Tamoxifen is an oral chemotherapy drug.  And every time I tried taking it, I’ve had adverse responses and this time it is no better.  Plus, my suspicions are confirmed when I take my temperature and it’s 99.2.

Frustrated at the whole situation, I remembered a discussion with Dr. F from the NBCC Summit a week or so ago, when she cautioned me about being consistent with each drug so that I did not become hormone resistant.  This is why I have an appointment next week to try and look at the big picture.  I have detailed notes on how I’ve not been able to tolerate everything I’ve tried over the past four years in my spreadsheet of life.  I will bring it for him to see.

It’s been ten years since I first saw Dr. Schoolcraft and just like Vanessa in the movie, If this is what I really want, then I to can be successful.  We will leave that in God’s hands.  But for now, I just want to feel better.

Murphy’s Law

You’ve got to love it when you are so careful to recognize minute changes in your life that they continue to become clues towards cultivating happiness!  Seriously, it is amazing.  So, as the last entry left us, I had finally decided to go back to Femara only after attending the San Antonio Breast Cancer Symposium with 8 thousand research clinicians, trying an alternative therapy tea, and realizing that knowledge can be empowering but accepting that knowledge sometimes takes time.

As it turned out,  after I started Femara, it would take exactly one month to change my life yet again.  Within that time, I was in Seattle for the Conference for Young Women known as C4YW with my fellow survivor BFF who shares my birthday even though she is 16 years younger than me.  Let me tell you, she is fabulous, plus she also went to Texas A&M.  I adore her.  Seattle reminded me just how much I missed Colorado.  But we made up for my sadness by visiting the Boeing Aviation Plant where I’ve never seen so many planes!  I didn’t know until I got there, that being there would be on my bucket list.  I could not get enough of it’s enormity.  Trust me when I say, if you’ve loved airplanes and airports since you were a kid and adore flying, then you must plan on visiting Boeing and taking the tour.  I even got a Boeing smushed penny complete with a bracelet that holds the penny!  Plus, you know you are exactly where you are supposed to be when you meet a new friend when registering for the real YSC Tour de Pink West Coast when you find out that she lives in Spain and after talking about living in France, she asks exactly where I lived.  After I say “Sciez” like she will not know of this little village on the lake, her face goes blank and she puts her IPHONE in my face revealing a text she had JUST received from her husband telling her that he’s in Sciez visiting a friend at that exact moment.

Really.  I read the text and then my face went blank.  We did the Now way? No, No way! Really? OMG Really!  It was thrilling for me.  I will visit Sciez someday soon.

Being at the conference made me feel anxious and frustrated because I felt as if I was missing something.  What I didn’t know was that the next day, I started my period! When this happens, we all know that you can not take Femara because this means you are not in menopause and makes the drug useless for you.  But for some reason, I was still confused in my head because my OB/GYN and a Fertility specialist both confirmed that even though I would have a period, that I was in fact postmenopausal, but now I was just not buying it anymore.  Things change.  Something is just not right.

Then, after less than 24 hours in Houston, I am flown to the East Coast for the Department of Defense Breast Cancer Review where I am one of four patient advocates for the Molecular Biology Genetic Panel.  Having arrived early, I stayed in my room to watch The Makers on PBS that just blew my mind because it was so good.  But the rest of the week I felt like I was in my own scientific heaven-like experience.  My panel of researchers were mesmerizing as we discussed breast cancer research.  I was there for my expert opinion and I was shy at first but soon got used to making my point and that felt great because we were all truly listening.  That was my first job since I was diagnosed and it was exactly what I needed.  I left there completely inspired, excited and happy to be alive.  I had found my professional voice and used it!

As soon as I returned, I had to go to Rice for class, then to the Ballet, and then to the Capitol in Austin to advocate for the inclusion of educated patient advocates within CPRIT when I emerged from the parking garage feeling like I was done and could finally take a breath.  What now? All I knew was that I needed to drive to YogaYoga West and I did.  My car just went there knowing that I couldn’t afford to register for Gurucharan’s two-day intensive class, but I went anyway.  It was almost my birthday and I’d decided that I really wanted to spend it there with them.  I was prepared to call my mother and tell her why this was exactly what I wanted for my birthday when I checked my account and cheered seeing that a long-awaited deposit had finally arrived!  I walked in thrilled that I was going to stay and attend his class.  Dr. Gurucharan Singh Khalsa lives in Oregan and usually speaks to large groups of 300 or so, but for two full days I sat 8 feet in front of him with people from all over the country totaling less than fifty.

On my first day of class while engaged in short (11 minutes) and long (30+ minute) meditations, I could feel my right carotid artery pulsing with what felt like sludge as I focused on breaking through any unconscious blocks.  It actually hurt, as I would rub my neck.  It was a slow and throbbing feeling like motor oil was trying to venture through my veins when it occurred to me later that night when taking my supplements that I had taken a Femara the night before!  Like I said before, my doctors kept telling me that I was in fact in menopause again, when I finally realized that they don’t know me NOW!  Finally, I put the Femara back in it’s bottle after taking it out of my weekly pill dispenser.  For my birthday, I was completely enthralled to continue class fully empowered by my progress.

When I got back from Austin, I made an appointment to see my Oncologist and that’s when I told him the news and finally agreed with him that I was in fact out of menopause and needed Tamoxifen again.  But this time I wanted to try taking 5mg twice a day to see if I could tolerate it and he agreed!  Learning this from SABCS, my doctor was thrilled to get as much of the drug into me as possible at any rate.  Right now I am taking it only at night and depending on how I feel in a few months, I may add in the morning dosage.  But knowing that I’ll be on this for up to ten years, I am in no rush.  Plus, the medication is $10 dollars per month.  Like Dr. Yen says, anything is better than nothing.  So, I am trying to be consistent and taking it slow this time.  And you know what, I’ve never felt better!  Well, for now!