Perpetual Denial

Last night while driving with a friend who is also a cancer survivor we got on the topic of denial.  It seems that when I had completed all of the requirements for the Leadership Institute for Nonprofit Executives I was about to fall apart physically and ended up making numerous doctors appointments within weeks of graduation.  Right then, I was already in denial for my health just so I could finish what felt like a marathon so I could get a medal.  And I did.  I received Distinguished Honors when I graduated for an Exemplary Final Project and perfect attendance.  I don’t even think being a cancer survivor is the reason I fall into perpetual denial.  I feel that being a survivor exemplifies how far we had to push ourselves to beat cancer!

My first appointment was with an orthopedic specialist because I was fighting a chronic case of plantar fasciitis with my left foot  and my right ankle would pop every time I would point my toe.  The plantar fascii runs along the bottom of your foot with the point of insertion at the tip of your heel.  When it’s inflamed, it feels as if someone is sticking sharp pins into your heel every time you put pressure on your foot.  They took x-rays and finally when I told the doctor about my issues he suggested that I quit wearing the orthotics that were in my shoes because they were to hard and in effect aggravating the plantar fascii.  But I’ve been wearing those orthotics since I was in drill team in High School and it felt odd trying to run without them.  Yet even against what I thought was better judgement, I got used to life without my coveted orthotics and the plantar fasciitis went away.  Plus, the popping in my right ankle let me believe that something was just not right with my musculoskeletal system and I knew it would only get worse.  That was until the doctor kept repeatedly asking me about when it popped and how it felt until he finally said that as long as it pops without any pain that it would be fine.

But he didn’t understand that I never pop and this was just not right.  Even so, he repeated himself and soon I left the office feeling like I had wasted everyone’s time including mine.  Had I been in perpetual denial about my orthotics and ankle for so long?

I think so.

With heel cups in my running shoes, my feet felt great.  And when my ankle pops I have to tell myself that nothing is wrong.  This is all part of living and learning how to manage fear of recurrence even though it is all out of our control.  I get so focused on helping others that I forget to help myself and that is not a great trait.  Yet the first step at gleaning new skills is recognizing that there are some skills I need to release and this is one of them.

When the doctor told me that it would be just fine without my orthotics and with the popping, I could hardly hear him.  I kept saying, What?  Really?  That can’t be!  Huh?  It just did not register in my brain that something I had used for so long was now not needed, as in the orthotics in my running shoes.  Or that a popping sound did not mean the end of the world or my entire leg.  In fact, he told me to stretch my calf more often and even gave me a brace to sleep in that would keep my foot flexed while I slept.  I rolled my eyes and laughed to myself, but you know what?  It worked.  My friend reminded me that once a cancer survivor, always a cancer survivor but then anything that hurts or pops tends to become something we just may not be able to handle, because it could be cancer again.  Yet as I continue to educate myself I feel more empowered with my life.

On July 8th, four years ago, I rang the bell marking the fact that I had completed chemotherapy and we all took pictures and celebrated the moment.  I was thrilled that it was over and immediately had the port taken out of my chest.  Yet our family pet was not so lucky this year when after a weekend of emergency services, the doctors discovered a
2 cm cancerous mass growing on his heart.  He had been his rambunctious self just three days earlier when all of a sudden he could not walk or breath and we didn’t know why.  He was only nine years old and such a great dog.  He was man of the house and after doing everything possible to figure out why he was sick, we got the news and it was to late to treat him.  His body was already shutting down and we were left wondering how it came up so suddenly when he was always so happy.  We were in denial when we came home without our dog, even though we knew he wasn’t at the hospital either.  Dogs have such short lives yet they leave an indelible mark on your heart with their spirit.  Even the dog didn’t know he was sick and lived every single day to the fullest.  I like the lessons he taught me.

Denial is one of many coping mechanisms we have to slowly understand and feel our emotions.  It works to save us, even though I never want to waste time.  Yet time is never really wasted because it’s moments like losing our beagle that remind us all of our own mortality.  We are spiritual beings have a human experience.  And sometimes perpetual denial can be a good thing, but only if you are a dog.

 

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.