Overwhelmingly positive, Things We'll Never Talk About, Contributing, Spirituality, Sharing Has Repercussions and My Cancer Journey

Hi everyone!

Dr. Ferguson, the #ToomaRemoova

Dr. Ferguson, the #ToomaRemoova, I won (Most Creative Gift Ever Award - and 11+ hours of her time and dedication)

I'm officially #damienated but have not had an opportunity to talk to my medical team in great detail about how things went. Although I can say VERY well. I am out of the hospital and staying with my family in Houston for the next several days to recovery in the lap of luxury and pampering. Jeff is headed here this morning to join up with me, but my babies are going to stay in Austin for a bit because they were exposed to some pretty legit illnesses at Daycare this week (strep and pink eye) and no one in this house needs to be dealing with those two things - especially ME). so in an overabundance of caution and respect for the health and wellbeing of those around me, I made a hard decision.

My Kids

Because he's just the cutest most lovable 2 year old ever! Hugging on our "real" dog Murphy

I get daily videos from the boys and we've FaceTimed a few times. Mostly just calling and telling each other how much we love and miss each other. It's been amazing but hard for sure. I want nothing more than to cuddle and dole out hugs and kisses, but I'm also realistic in that they will be all over me - and I cannot pick up more than 5lbs in each hand during my recovery - good thing my babes are active and agile and can climb onto MY lap for me to dish out affection and hugs and head pats. I am looking forward to that day with everything in me. It's my biggest craving right now; but I'm going to be patient and not rush the situation because we are in baby step mode right now.

Overwhelming Optimism

One thing that I've learned this week from your comments and and the incredible outreach from our friends and family throughout the WORLD has been how vast and large and amazing our support network is and how we are ALL on this cancer journey together. And that's what it is and will be a journey. I love that idea. One of the main things that I want to come from this experience is that I maximize the platform that I've been given. I passionately believe that if there is ANY good to come from the experience that I share it with those that can benefit from it. Part of that is sharing my story in all it's honesty in case someone else can relate to it or learn from it. I have a running list of things I'll be sharing with people - and one of my support team members from MDAnderson, an APN named JOSIE is going to be starting a support group at MDACC for patients and survivors like me to gather and talk about what we've experienced and learned, that's what she wants her enduring legacy to be and I want her to do it! Another thing I've learned is that I can be overwhelmingly positive - and that's the attitude that's going to carry me through my treatments and keep me motivated to fight this cancer. It might get exhausting, but we're on this journey together if you're following this blog, personally, or on FaceBook. Get on board the optimism train.

More On Toolboxes

In life, we have our toolboxes, and one of my skills is knowing that people need encouragement so this week, I've been fastidiously taking notes about the skills my nurses, doctors, and anyone I came into contact with had that needed to be praised and observed. We can only get better through feedback. I plan on providing my feedback directly to MDACC as I've already reached out to those around me and told them what I appreciated about them individually. #PowerofOne #IAppreciateYouWhen, #YouMadeMyDayWhenYou...

• Make a daily focus list (what do you want to accomplish today / tomorrow - goal: keep moving forward)
• Talk about what went well - "Retrospective": as a team, what did we do well, what didn't go so well, how can we make it better for next time? - Goal is to get better as a team

Things I'll Never Share

While we are in a small holding pattern right now, due to the follow-up appointment with my medical team coming in about 2 weeks, I want to be very honest that I do NOT intend on sharing my actual diagnosis with people. I fear it will lead to people trying to figure out the next step of "what does that actually mean." and try to quantify it. And that's not up to Google or anyone other than God, myself, and the way my body responds to my treatment. That's the part of having faith and fighting cancer. We're going to be doing MRIs every 2 months for the rest of my life - and there's no way to get ahead of or around that. We're going to be figuring out HOW to live life with cancer and how my body responds to the treatment plans that we decide to pursue. So, while I know it's an exciting thing to try to hear about the % of tumor removal, know they got as much out as they medically could while respecting my wishes of being a "boy mom" and maintaining my motor skills, and being myself, having as much opportunity as could be had given every medical device and procedure available to them in the operating room including the Cortical Magnetic Stimulation machine and MRIs in real time and I'm GRATEFUL for every moment of my 11+ hour surgery.

Giving Back

At MDACC, there are always research programs running that will use the bulk of any remaining parts of #Damien to help further research on brain cancer. They'll take whatever portions of him that are not vital to my diagnosis and treatment and use it towards helping find answers and solutions that others (and myself) may benefit from - all medical "waste" that would be disposed of if not donated to these programs. It all aligns with my desire to #PayitForward. I signed up immediately upon them presenting me with the option. I hope others will do the same. Another part of this experience will be keeping this record and sharing it with others as I learn tips and tricks that got me through one stage to another - like, visitors in hospital rooms after major surgery is tough for the following reasons:

• Someone is ALWAYS in the room with you - you have no physical privacy or alone time; I'm not complaining, but you HAVE to respect and trust the people in the room with you completely. Your body will do weird things after major surgery and they will be pushing drugs into your system that only make it do weirder things. You don't want to know more. Trust me. 

Sharing Has Repercussions 

I'm not going to sugar coat it. This blog is fun to write, but in doing so, I am giving up my privacy and sharing very intimate details with people - there are pros and cons and it's a minefield.

• I am benefitting because I get to share my viewpoints and thoughts with people; and also the legacy of the experience and WHO I am with my kids forever. Perhaps something even bigger will come from it as well. 
• I'm voluntarily giving up my privacy and that of my family and friends
• It's a great convenience to me to update one place and not a million other messages
• I am a fiercely independent person and private most of the time; my house is in absolute silence from 7:30 am - 4:30 pm where I have everything exactly how I want it and the only noises Are mine based on decision and the only distractions I hear are those I make are intentional. I have built a fortress and it's exactly the one I want - breaking it down is hard. It's a very nice existence for me and I love it. Working from home rocks! It can be overwhelming to let people into my space and accept help. I'm working on it. 
• I'm getting to expand my toolboxes; with professional assistance!
• I'm getting to understand and know myself better
• I am living my life with purpose
• I get a rare opportunity to inspire and motivate others just by being myself and sharing my story
• I've found a fresh zeal for life and a whole slew of connections
• Covered in prayer for my surgery; I had not ONE doubt or fear about it's successful outcome; and that comes from all the encouragement of each and every one of you! So thank you - but it will never be enough for me to simply type these letters on my keypad. From the bottom of my heart, I sincerely thank you and appreciate you!

Spirituality & Family of the Heart

Look, I know that this topic is something that makes people uncomfortable - but to NOT include it in my story would be wrong. It's a part of my cancer journey and an important part of it. I have been given a platform and it would be disingenuous of myself to omit it from my blog. I'm a people pleaser, I don't like conflict, and I don't particular espouse my religious beliefs on others. I think you can lead by example, quietly spread your faith, and lead people to wanting to be better humans through actions and words. If you don't like this - please change the channel, I don't need or want you to attack me. If you don't want to consume the Jesus, then don't - but you can do so nicely. :) Just don't read my posts. 

I found a good quote: 

I will not allow anyone walk through my clean mind with their dirty feet" - Please wash your feet. (okay, I added the last part)

-Mahatma Ghandi

Gather round, Ags, I have a story to tell. I get asked a lot in life about where I'm from - and it's one I struggle to succinctly answer, normally I'll say the world - but I live in the country outside of Austin.  You hear my parents talk and you know it's not originally / solely from Houston, Texas, we're from South Louisiana: New Orleans, Buras, Belle Chasse, Venice, Port Sulphur, Hammond! I am a child of the globe. We've lived all over the place. I grew up in Singapore in the 1990s (during the first Gulf War years) where I think I learned a deep respect for other cultures - or at least the ability to appreciate and observe them without judgement. We went to The Singapore American School. I can vividly recall at one point the school bus having put a plastic banner over the name of the school on the side of the bus and thinking how crazy that was. I've mentioned my family and our capacity for love but one of the things we also do is adopt people into our hearts. One such family, that has been with us since the 1990s is the Leviton family, who are Jewish. They recently went on a family vacation to Italy, and were keeping up to date on my progress via texts with mom. Sending us positive thoughts and prayers. Now, being Jewish, and our being Catholic - has never been a problem. I want to share some stories about how amazing my adopted Leviton's are! 

I have a favorite Catholic saint, St. Francis of Assisi, partially because I wanted to be a veterinarian growing up. I went to Texas A&M University to study bio-medical science, I interned at a vet clinic young to get exposure and an idea of what I was up against. After 1.5 years of "attending" school (which means, it's hard for a freshman to get her butt out of bed and into her biology and chemistry classes) and having to fail, drop, and retake those both...I figured out quickly that I wasn't as dedicated to this dream as I needed to be to make it a reality. I found myself in a meeting required by the University and program which maps out the next 8 years of your education and financial life and almost immediately changed majors to Journalism - see, it's sometimes the tiny decisions we make - that put us where we need to be - in this case writing these blog posts with some semblence of an idea of how to do so. Thanks to my BA in Journalism I'm not afraid to put my thoughts down and share them with you!

So, why bring up St. Francis? Because he was the Patron Saint of Animals and also, Jeremy's (my Down-syndrome brother's favorite Saint too) - Jeremy would watch this VHS video tape we had on St. Francis all the time and then go out and preach to the birds, sometimes filling his hands with birdseed to see if the birds would come sit in his hands - it's a great visual memory for me.

"Oh Hanna, you are in my thoughts in Italy. In every church or when I pass a shrine along the roadside, I feel I'm channeling you. I say your name. I hope you are enjoying the trip!!
You don't have to be Catholic to love St Francis and Pope Francis."

Back to the Leviton's and their amazingness. In a weird red twine connection, Italy really encourages people to visit the St. Francis Basilica. But the Leviton's put aside their spiritual believes and searched out information on what Catholic saints to pray to for cancer and healing, St. Peregrine if you're curious. How incredible. I would consider them Family of the Heart; we aren't blood related but we are related where it counts, deep in our hearts. These are the types of relationships we should be forging with people! Adopt people - one of my greatest things I have always wanted to do is share my family and friends with other people - special people who know how to really LOVE and finding people who need connections and making those connections letting the awesome people I know meet and depend on the other awesome people I know - be it a friend in college who couldn't afford to go home for Thanksgiving or Christmas and bring them with me home and having my family open their arms to them - that's what I want for everyone this Thanksgiving 2018; Share your awesome people and also for said awesome peeps to come over and we just eat together as a family of the heart. I'll help cook and plan the menu - we'll just all contribute and eat as a one large family. 

In an effort to "repay" them their kindness, I too will be borrowing from another religion to honor my faith and spirituality. I was visited in the hospital by the Priest who laid hands on my dad the day of his open heart surgery, Fr. Dominic, from Methodist in Houston. He came and spoke with me for several minutes in the hospital upon my parent's request - now I've heard of Fr. Dominic but never had the pleasure of personally speaking with him and all I can say is what a treasure he is. We talked about my spiritual needs and the solid foundation I am trying to build and how I want to work on my relationship with Jesus through this process because I know it will only help me be a stronger fighter and better person; and he introduced me to the Jewish tradition Shacharit which is pretty incredible in the way they make it possible through prayer of the morning, and prayer of the maariv. It's something I'm adopting and I believe the PERFECT way to repay the Leviton family for their intercessions on my behalf while in Italy. I respect and adopt from their religion the same way they did for mine. And I think it's going to be an amazing experience. I hope others can think about it this way at times as well. Look to the world around you and find things that inspire and fit your needs and utilize them! Borrow, adapt, and respect. And it conveniently aligns with the priorities I've laid out for myself to appreciate every day I open my eyeballs and get to place my feet on the ground.
And, yes, Ms. Helen, the food on our trip to Umbria, Italy WAS great! I've gained at least 10 pounds while touring with you. It's now time for to start low carb-ing and losing the weight from our trip. I'll be eating more whole foods and less sugar because there are theories that sugar feeds cancer cells and I'm going to start a food log so we can begin using that data against my progress and MRI results - if food is a contributing factor then we can help #PayItForward simply by observing how a better diet impacts:

• mental health
• personal feelings
• and overall physical health 

This evening at the dinner table I was able to look my brother, Matt, in the eyes and tell him for maybe one of the first times in our lives how much I love him. It was a glorious moment for me. He had to leave the table. #bigBaby, but I do! How could I not take the opportunity to look him in the eyes and tell him how much he's meant to me - and why did it take brain surgery for me to find the courage to do and say it? That makes me sad and somewhat disappointed in myself. He's my BROTHER. How could he ever doubt how much he means to me?

My new prayer card with cross

My beautiful note from Ms. Helen Leviton