What I Did On My Summer Vacation

We left Arizona for Massachusetts for a family vacation on July 6th not really knowing if I was going to live or die and my life was literally flashing before my eyes. My doc gave up on me for whatever reason and looked me in the eyes and told me I had maybe 6-12 months to live. My cancer had taken over  more than 50% of my bones and had spread (as we already knew) to other areas of my body. They also thought I was a rare and difficult case.

How the hell do you process this? What the hell do I do first? I wasn't ready to die. Crap, this sucks.

Jeff and I dove into action, again. This time it was to update our wills, we talked with our kids and told our closest friends and family what my doctor told us. I visited Sleepy Hollow Cemetery and picked out our interment spots in the town we spent growing up, where we shared a special bond. We thought if we just got everything in order then we could set it on the corner of our desk and live out what little time we had left together. Isn't that what you're supposed to do when the chips are down and you've been told you had only a mere 12 months or so to live?

Fast forward to the same afternoon when we came home numb and crying and hanging onto each other like it was our last night together.

Not surprisingly, I had connections at Dana Farber Cancer Institute. I didn't really know them in person, but I had met them via a weekly twitter chat that I frequented about Metastatic Breast Cancer. I had known enough about both of them to know that I trusted them with my life. Sounds super dramatic but I did. These were 2 doctors and cancer researchers and one is a cancer survivor herself who I admire greatly. I trusted them enough to send them my spit in a kit and give them authorization to use my cancerous tissue in a Metastatic Research program (mbcprojrct.org) so that could help others in my shitty cancer situation. I reached out on a Friday afternoon in a private twitter message and by Saturday morning I was told I had an appointment with the head of the Dana-Farber Cancer Institute in Boston. Incredible, amazing, okay, we'll be there, July 14th.

To try to make a long story short, we went to Dana-Farber and we met the doctor and fellow who would give me hope and agree to take on my case and guide my care closely and carefully. We learned that I am not a rare case at all but the reason why I have Stage 4 metastatic cancer is rare. I have what was they referred to as "An interesting array of genetic abnormalities" and that's quite fine with me.

All I know now, after being in the hands of Dana Farber and given a plan and a direction and an understanding of where I really am in this big game of LIFE, is that I may just be okay. I may be able to plan things again without the fear of dying getting in the way. We leave Friday to go back to Arizona and I'll be armed with 2 oral prescriptions and orders for pain & side effects management and an appointment to be back in Boston in 3 months. My care will be co-managed with my doc in AZ and life will go on.

I haven't quite digested what all has been presented to me just this morning, but I do know that I'm not meant to die yet. My journey isn't over. My job isn't not done. Whatever it is, I will take it.

As cliche as it sounds I have been given the gift of time. I know what's important in life. I've been thriving for 3+ years and I intend to keep doing what I am doing as long as I am able and so I get to live life to its fullest and keep checking the boxes.

And I thank you so much. My family, my friends, strangers who have prayed and sent me positive juju. I am one of those people who believe in the power of positive attitude and prayer and all that stuff. I don't know what else to believe in.

I'm alive and hope to stay this way a while. Life is for the living so bring it on.

Reality Hits like a Ton of Bricks

This isn't much of a post, but rather just a quick update in the form of a horrible email I sent to family and close friends with an update. Jeff and I went to the Doctor yesterday for the results of my MRI last week. It wasn't good news and I am basically loaded with cancer again. I knew this before she opened her mouth actually. I just didn't know how bad it actually is. Please read below for where we are at: 


"I so wish that this email had a more positive spin on it, but we're back in the weeds with the cancer. I had been feeling great energy wise, finally had my kidney stents removed and my blood counts looked pretty good, etc. However the inside of my spine and bones have been having an effing party. We found out yesterday that the bone tumors are all back and then some. 
"Extensive" "Widespread" "Innumerable"  

My Oncologist told me that if she were to do an MRI on every bone she's fairly certain I would have cancer in every bone in my body.
I'm gonna leave it at that because no one should have to listen to the rest.

Bottom line is that Arizona doctors have done everything they can do for me so Jeff and I will be going to Boston for a Dana Farber Cancer Institute appointment. This is all on the heels of our Boston/Brant Rock vacation so we will be in the area a few weeks in July.
We will be staying in Newton and not sure when we will arrive but we will keep you all posted" 

Yes, it sucks. Our family is in a complete daze but we'll be ok. I've got one of the best Dana Farber doctors on my side, PERSONALLY working on getting me in with one of THE best in their field. This is still somewhat optimistic news and once I get there we will know if there are any other treatments that my cancer may respond to. If not, we were finally told that without any further treatment I can live between 6-12 months more. I want to live longer, but not if my life will be shit. I get to decide when I'm ready to go and I'm not done here yet! 

Boston, we're coming back.
#BostonStrong 


Peace and love
Tracy

Li-Fraumeni Syndrome: Did you know there's more to learn from genetic testing than just BRCA1/2?

 I frequently find myself scouring the internet in hopes of finding one woman or man, someone who has been (sort of) in my shoes so I can relate to their story. Someone who knows what I feel like right now.  The research is so new, the reports haven't all been written, no stats have really been confirmed, but thanks to God we have an understanding of this syndrome that literally predisposes a carrier to upwards of a 93% LIFETIME cancer risk. I'm not just talking about Breast Cancer. I am talking about several types of cancer that include breast, brain, colon, prostate, etc. Pretty scary to have something like this hanging over your head for my sister Stephanie, a mother of 2 who now will live in fear of illness for her or her school aged kids and how about my 24 year old daughter who went through with the testing only to discover that she too carries the dual gene mutations like me. My son has decided to test however does not want to know the outcome. He said he would do it for the family but would rather not know his fate at this point in his life. Its a tough nut to swallow and I am so proud yet really afraid for my daughter for taking this on at her age. Of course the silver lining is that we know. We know to start watching now. Not at 35 or even 25. We will certainly be vigilant and keep up on and be a part of this new research and also get involved with others who share the same future. This syndrome is very rare. I now know why it was so difficult to find others like me or me like them. 

Let me tell you what I mean. I can't recall if I've written about the Li-Fraumeni (LFS) or Li-Fraumeni Like (LFL) Syndrome that I have been diagnosed with. This means, right now in the VERY infant stages of research, if we were 100% like the statistics of this predisposed cancer syndrome, then I would have had a lifetime cancer risk of 93%. Let's just say that I never knew this prior to even my original breast cancer diagnosis in 2006. In 2008 when I went ahead with the genetic testing to determine if I carried the mutation in either BRCA1 or BRCA2 or even both, there was no mention of the other 21 genes so I never thought anything more about it. 

In 2014 I cheated on my oncologist for a second opinion and possibly a new treatment strategy and he immediately told me about this new genetic panel test they now suggest we take as a family with several cancer morbidities. After spitting into a couple of empty tubes and waiting 2 weeks for results, it was determined that I carry, both TP53 and CHEK2 gene mutations. The fact that I carry 2 mutations is rare in itself, however, Li-Fraumeni Syndrome reports show that just about 500 families in the US are registered with having this syndrome. 

After my sister was diagnosed with the same TP53 gene mutation as I was, she immediately made an appointment with the genetics department at Dana Farber in Boston and shares the following from her meeting:

 Dana Farber has been doing extensive research on “classical” cases of Li-Fraumeni in which all of the statistics and cancer risks were determined from this research.  Unfortunately, they had not realized that there were many people that had the gene mutation, yet did not follow the “classic” pattern of risk, or show signs of early onset cancers.  Now that the multi-panel gene testing is readily available and affordable to have done, they are uncovering more cases of the Li-Fraumeni-like (LFL) or “non-classical” cases of this mutation.  That’s the umbrella we fall into, and although Dana Farber is an amazing research facility, it depends upon donations and grants in order to complete certain genetic research.  Currently, a two year, whole-body MRI research study is underway, with hopes of raising enough money to begin a second study, those that are found to have the TP53 mutation will be eligible and placed on a waiting list. Any family (such as mine) that is affected by this syndrome will be taking part in the early days of this research to help identify the risks associated with Li-Fraumeni-like syndrome.

Here are links to more information. We’ve spent hours trying to digest what we can in order to get a better understanding of what we are facing. Our plan, led by Jeff,  is to get Alyssa seen by the genetics folks at MD Anderson in Houston since they too have research trials that we hope to get her involved in.  As we learn more in the next few weeks we will share more. 

As always, thank you all for the support and prayers and special juju. My entire family thanks you from the bottom of our hearts. 

The National Cancer Institute

http://www.ncbi.nlm.nih.gov/books/NBK1311/

The Li-Fraumeni Exploration (LiFE) Research Consortium

http://lfsassociation.org/wp-content/uploads/2015/10/LFS-Awareness-Brochure.pdf

http://www.cancer.gov/types/breast/hp/breast-ovarian-genetics-pdq#section/all