Chilly Mamma Jamma 10/27/12

At packet pick up this is what I wrote on the banner of "Why I Ride."  

Bill Bastas spied me and snapped this photo.  I'm surprised you can't see my teeth chattering!  This was at 8am and  temps in the 50's!  Two days ago it was almost in the 90's!

I didn't take many photos.  It was FREEZING that morning!  

Janelle snapped this photo.  Larry and Janice laughed because I was so cold that I forgot to mount my bike before trying to clip in.  It was REALLY cold!  

Some of the crew from our team.  I'm with a bunch of young hipsters.  

With some friends post ride.  I'm not happy because I was finally warm.  Deborah made me unzip my fleece jacket to show off my jersey.  Yes, that is a fleece scarf around my neck!  

Nice surprise to spy this while I was at the 21 mile mark downing lunch.

The fallen angels I rode in memory of.  

Many thanks to those that donated towards my Mamma Jamma goal.  All funds raised goes towards 10 local organizations in Austin.  I'm very grateful for Ambit IT, Steve and Ratchana, Paul and Hillary, Tommie, Steve, Alicia, The Hampton Family, Katherine, Liza and Sis Kelly.  Anyone interested in donating can still do so.  Donations will be taken until the end of this month.  You can donate here.  

This is my third time riding and this year the weather made it more challenging.  I rode 45 miles but only averaged 12.5 mph.  My body just didn't want to work properly in the 50-60 degree weather.  Most people missed the first rest stop which made it tough since I was hydrating and really needed to use the restroom at mile 16.  Regardless, it doesn't take away from WHY I chose to ride.  I choose to ride to ride in honor of all the ladies that I serve.  I rode for myself.  I rode in memory of all the ladies that I've known and lost to breast cancer.  It meant a lot to me because we lost 3 ladies in 3 months.  We unite together to honor them and to support people here.

Shine On

It's been a difficult past three months.  Three losses within three months.  Death is always hardest on those of  us that are living.  The three ladies that passed are now at peace.  They will forever Shine On.

I spoke at one of the Remembrance Ceremony early this month.  She was a beautiful angel and full of life.  There is so much we can learn from her.  There is so much we can learn from all of them.

I'm at such a loss of word that I'm uncertain where to begin with this post or should I just end it?  Life is so precious and fragile.  Dr. Litton was correct.  We all need to go live our life!

Some thing that I've done that has never been on my bucket list but I guess I can add that to my bucket list is that I rode on a motorcycle when I told myself that I would NEVER get on one unless it was an emergency or my last resort.  To date I've ridden on one three times now.  What a year for adventure!  I've gone paragliding and now motorcycling!

I guess I need to end this post since I'm all over the place.  This Saturday is the Mamma Jamma Ride and I ride in memory of all my ladies that will always shine on and will always have a special place in my heart.

Step One: CHECK!

The results of the P53 came back much quicker than I expected which was a very nice surprise. I think it just took 8 or 9 days.  I've just been too swamped to post anything. It was negative!  Yay!  This is huge because those that are HER2+ or Triple Negative breast cancer tend to have the P53 mutation.  I just really hope I'm BRCA1 negative too.

This means I'm NOT at a higher risk for other host of cancers.  If I'm able to have children, I will not pass this along since I do not have this genetic mutation.  I can check off step one!

I have a visit with my gyno next month for a routine check up and to see if we can get a better gauge of my ovary functions.

This wonderful news was much needed during a crazy time and when I've experienced loss.  More to come.

Dreams

We dream all the time but most of us will not remember our dreams unless we write them down upon waking.  My sleep is much improved now that I'm a year out of Tamoxifen but the quality still fluctuates with time due to hormonal fluctuation.  I've had some vivid dreams recently.  They are so vivid that I did not write them down but I remember them.

After I got back from MDA I had a dream that I was pregnant!  Last night I had a dream that my P53 test came back positive!  I don't know if it's the deeper sleep that I'm getting or if I haven't had time to really think about the impact of the P53 test but both were freaky!  I remember at one point in the night wiping away tears.

It's been a week since I had my blood drawn for the test.  I'm hoping the results will come in by the end of this week or early next week.  I decided to wait for the results before making my appointment with the gyno even though I need to see her for my yearly anyway.  I'm waiting and all the while hoping I haven't opened Pandora's box.  Maybe Dr. Litton was correct that genetic counseling was a good idea.  It's about bedtime and I hope I dream of something nice...maybe something that doesn't even have to do with cancer.  Maybe I can dream of fat chubby puppies or my sweet niece and nephews!

Post MDA Visit w/Dr. H

So I've recycled a photo that I've posted earlier this year of Dr. H.  This is my oncologist that came to see me the day after I was diagnosed on her day off.  She encouraged me to see a doc at MD Anderson because I asked her six months ago during my last check up with her about fertility.  She wanted me to see if the MDA folks would find it safe for me or give me a green light if that was the path that was chosen for me.  

Today we checked with my insurance company and thankfully they will cover the P53 test.  Step 1 check!  Its not a standard test so no one really knows when the results will come in but I can only assume it will be about 10-14 days.

Step 2 will be to see Dr. Neyman to see if we can tell how my ovaries are doing in terms of egg production.

The outcomes of Step 1 and 2 are super important but so is Step 3, if not the most important:

Step 3 will be to find my life partner.  Regardless of step 1 and 2, my hopes and dreams would be to find my life partner.  I have a small window of opportunity to possibly conceive naturally BUT I also know that this cannot be rushed and this is a journey that I will not do on my own.  Many single moms are rockstars and Dr. H told me that "Aren't we all single moms?" but it's not something I would choose to do on my own from the get go.  

I thought this year would be the first year not to reach my deductible but I think I'll hit it by the time I finish up  w/ Dr. Neyman.  More to come!

Live Your Life

9/17/2012 I finally made it to MD Anderson

Finally I got to Houston!  The roads that lead to MDA was rather bumpy.  I had a difficult time having my case manager return my calls.  Okay, the original case manager never returned my call after several voice messages.  It got to the point that MDA closed my case because they never heard back from me.  So you can see how upset I was.  Thankfully I was not a newly diagnosed patient but was appalled that a world renown center would treat a cancer patient like that.  

Anyway, I got my case reopened thanks to an email to my oncology nurse.  I was able to switch case managers and to tell them my story so it didn't happen to anyone after me.  Needless to say, things went smoothly from that point on.  So smoothly that I've been highly impressed by MDA besides that incident.

I got to spend the weekend with Blanca.  I didn't get in until that afternoon because there was a benefit for one of our ladies that passed last month.  The benefit was amazing and raised about $4000.  I had a great time hanging out and catching up with Blanca and her daughter Izzy who is cute as a button.

Fast forward to this morning.  I got to MDA early to make sure I found it correctly.  Besides, I haven't met my deductible yet for this year so this visit was going to cost me about $500 so I didn't want to be late for it!  The directions they gave me was great and so was my GPS.  Information center was great and before I knew it I arrived!  Some photos as proof.

Fancy, this is how an actual cancer center works...especially a world renown  one.

From start of registration to the nurse that walked me out was an amazing experience.  Everyone was courteous and prompt.  It was only Dr. Litton the breast, fertility and genetics specialist that I had to wait for about ten minutes.  Of course, I had to undress from the waist up and opening to the front.  Robe is below and so is the funny story of the sign I forgot to snap a photo of:

I forgot to take the photo of a sign to NOT take home the robes but they can be purchased to  take home on level 2.  Not sure why someone would want a souvenir of a robe from a cancer center but what do I know?  It was soft enough but still...

Anyway, I met with the nurse and went over my history as well as why I made my way to MDA after almost 7 years of diagnosis.  Dr. Litton came in with a newbie and started spewing my stats and everything I went over with the nurse without ever looking at notes or my chart of my files.  Damn!  I was impressed!  She was also warm and compassionate and definitely knew her stuff.

In a nut shell:

She doesn't think I am BRCA+ but would like me to consider the BART or P53 test.  I've heard of P53 and remember asking Dr. H about it long time ago but forgot what was said about it.  Anyway, she would rather me do the P53 over BART since I'm HER2+ and BRCA is usually TNBC.

Studies shows it's safe for breast cancer patients and ER+ ladies to have babies 2-4 years after treatment.  (Or may have been diagnosis.  Darn, forgot.  But regardless I'll fall into that guidelines.)  Of course there are not guarantees but she doesn't see why I shouldn't if I wanted to have a baby.

She does not believe in follow up scans or tumor markers.  In my case, she would want to run a complete breast and abdomen/pelvic CT scan to ensure there isn't a micrometasis anywhere prior to getting pregnant.  I told her this was not immediate since I haven't established my life partner so she said to have it done before I was serious about this.  Of course this is pending P53 results.

She feels 5 yrs of Tamoxifen is enough and that no more is needed nor is an oopherectomy!

I have a small window of opportunity where my eggs would be viable and producing but we know once women hit 30's that it drops significantly and even more so since I had chemo.  So my initial thinking that I have up to 5 years might be wrong.  We didn't establish the numbers in years but I am probably producing less eggs that an average 35 year old.

My body is forever changed.  I need to consume about 75% of the calories I consumed prior to treatment and for the rest of my life.  I guess I shouldn't beat myself over the head over those last 10 lbs.

Basically she answer ALL of my questions and would have answer more if I thought of more.  I seriously was aiming for 25 minutes with her.  I was in there with her for about 45 minutes.  I was with the nurse for about 10-15 minutes.  Needless to stay, I'm a happy camper.

As Dr. Litton left the room she told me, "Live your life."  With that, I'm back in Austin and am enjoying a cocktail.  I have an appointment with Dr. H next Monday to discuss everything and see how much this P53 test costs.  If that is all clear and my CT scans are clear and I find my partner in crime I have a green light.  I also feel good about keeping my ovaries at this point in time unless more data comes out.

Guess it's time for me to LIVE MY LIFE!  Cheers! 

Fast Down and Dirty on Babies after Breast Cancer

I thought this was well written and to the point.  I have my appointment with MD Anderson later this month and thought this came in a timely manner.  I'm hoping my appointment with them will be insightful rather than a short 15 minutes of, "You're healthy.  Keep up what you're doing and just go for it!  See ya!"  

Babies After Breast Cancer: What are the Options?

August 26, 2012
by Amy Jacobson, RN NP-BC UCLA LIVESTRONGTM Survivorship Center of Excellence

In an ideal world, along with chemotherapy classes, newly diagnosed breast cancer patients of reproductive age would receive counseling on how their treatment may negatively affect their ability to have children and what options are available to them to preserve it. Unfortunately, research shows this may not be the case, as a recently published study of young female cancer survivors in California indicates that only about 12% remembered receiving counseling about how to preserve their fertility¹.

What are the options available to breast cancer survivors who were unable to take steps to preserve their fertility at the time of diagnosis? The answer to this question depends on the treatment received. For example, Ductal Carcinoma in Situ (DCIS) treated with surgery and radiation will likely have no affect on a survivor’s ability to conceive and carry a pregnancy. However, if a woman is taking Tamoxifen pregnancy is contraindicated due to the risk for birth defects.  A woman who received chemotherapy that affects the ovaries (such as Cyclophosphamide or Adriamycin) and becomes prematurely menopausal may be unable to have a biological child, but could carry a pregnancy to term through fertilization and implantation of a donor egg (if she is not taking Tamoxifen or other endocrine therapy). If she doesn’t have a partner, she could utilize donor sperm. Reproductive specialists throughout the country offer women the opportunity to choose egg and sperm donors based on their physical characteristics, educational accomplishments and even what they enjoy doing in their spare time. Adoption is also a possibility, through private agencies, international channels and foster care.

But all of these options come with a cost, both financial and emotional, that a survivor may not be aware of. Most health insurance plans do not cover fertility treatments (even for cancer patients), and a donor pregnancy may cost more than $10,000. Private adoptions often include legal fees and medical coverage for the expectant mother, and the mother has the right to withdraw her consent to give up her child at any time. And, cancer survivors may carry the extra burden of fears of cancer recurrence.

So, it is important for the survivor who wants to start a family to not go it alone. Googling late at night can be overwhelming, and reading message boards filled with horror stories and secondhand information can also result in emotional overload. Establishing support with a qualified counselor or clergyperson for the journey ahead is critical. Finding a reputable reproductive specialist is also important, particularly one who has experience with women who have been through cancer treatment. Completing a realistic budget before proceeding is critical, so that emotions don’t dictate finances.

A good place to start is myoncofertility.org, which offers quality patient resources on fertility after cancer. They also have a toll free help line at (866) 708-FERT (3378) to answer questions about fertility after cancer.  Another great resource is Fertile Action (www.fertileaction.org), a non-profit organization started by breast cancer survivor Alice Crisci to assist with decreasing some of the financial burden associated with fertility preservation/treatments for both the newly diagnosed and post-treatment patient. Fertile Hope also has a searchable resource guide that includes adoption agencies, mental health professionals and surrogacy agencies on their website at www.fertilehope.org.

UCLA LIVESTRONG Survivorship Center of Excellence 

References:

1. Niemasik, EE, Letourneau, J., Dohan, D., Katz, A., Melisko, M., Rugo, H. & Rosen, M. (2012) Patient perceptions of reproductive health counseling at the time of cancer diagnosis: a qualitative study of female California cancer survivors. Journal of Cancer Survivorship. doi: 10.1007/s11764-012-0227-9