One Day At A Time

It’s been about a week since I last updated. So let me take a moment and fill you in on what we and I’ve been up to.

Overall, sleeping is my primary job and I am really good at it. Essentially, I’m a 44 year old infant. 

SUNDAY: We had friends over, watched football, ate some incredible smoked pork, an array of southern sides and enjoyed some mid day cocktails. While I did little to nothing to contribute in the kitchen, it felt incredible to have a day full of normalized activities  surrounded with friends so close to your heart. 

MONDAY: The boys had a day off so Harper benefited with a skip day and we spent the day home together as a family. Amid the simplicity of hanging around the house, Tucker had XC practice and then lunch with his teammates. It felt easy and a semblance of normalcy even though I’m slow and far from who I was prior to surgery; simply being together lessened the weight of the cloud of anxiety and stress that was floating over our heads.  

TUESDAY: Mixed emotions is the easiest way to sum it up. We knew meeting with Neuro Oncology and Radiation Oncology was an integral and necessary aspect to the process; however the necessity of having these medical experts on my team comes with mixed emotions. I am blessed and fortunate to have two oncology experts on my team, however I simply cannot believe I am actually here and a recurrence has actually happened. Welcome to my new reality. 

Paul and I were fortunate and blessed to have our friend Deb (NP in Oncology BMT at CHOA) join us for our appointments. She took the role of making a notebook for me, taking detailed notes, asking questions, clarifying details and frankly doing a really good job laughing with us. I am pretty sure we collectively had more “fun” with each oncologist than most families do. Hold on to your stethoscopes… you just got formally introduced to the Giliberto Family.  Enjoy the ride and seat-belts are optional. 

IMG_deb 

Joking aside, there is a plan and I will do my best to outline it here. If course, with everything medical, we are awaiting insurance to decide what they will approve and we expect that will take a few weeks. 

There are some pathological micro array data that we do not have yet, however, this is what we know about my tumor thus far and it is all good:

  • EGFR V3 amplified
  • IDH 1 mutant tumor
  • MGMT is Methylated

All of the above indicate that the tumor is receptive to treatment and having its ass kicked by radiation/proton therapy and Temodar (oral chemotherapy)

I am fortunate that my tumor and myself as a patient am a perfect candidate for a new a cutting edge treatment called Proton Therapy (You can read about it here – since I am incapable to explain the complexity of it). This is what we are awaiting insurance to decide if they will cover. A process that may take at least a few weeks. 

Assuming the insurance Gods rule on our side, we will begin Proton Therapy in early December for 6 weeks (Monday – Friday) and will begin 42 days of consecutive oral chemotherapy (Temodar) at a dose of 75mg/m². In addition to a Flu shot I’m getting today, I will have at least one and maybe monthly aerosolized pentamidine treatments in order to prevent  PCP Pneumonia. Blood labs to check bone marrow and blood cells will be routine as well. 

At the completion of the 6 week Proton Therapy and 42 days of Oral Chemotherapy, I will get ONE MONTH OFF!!!!!!!!!

After my month off, I will begin a 12 month cycle of Oral Chemotherapy.
Month 1: I will be able to select 5 days when I will take Temodar at a dose of 150mg/m². after the 5 days, I will get 28 days off.
Assuming my body can tolerate this increased level through weekly labs, we move to Month 2 with a dose of 250mg/m² on the same 5 days on and 28 days off until we get through 12 months total.

I am not going to begin to get into the details and particulars about the frequency of MRI scans, drugs, side effects, potential side effects, impact to my body, how I have to handle the chemo, as well as safety issues and the out of pocket cost of Chemo we will absorb (*hint it’s insane). That is all a post for another day.

If the Insurance Gods do not rule on our side with Proton Therapy we will have traditional Radiation Therapy and all of the schedules would be the same.

I have already on boarded Palliative care to my team and they will serve to help me with management of treatment side effects, would be my point of contact for medical marijuana (cannabis oil) and drugs for anxiety, etc.

To sum all this up in a few words… it was an overwhelming day filled with a tsunami of information. Reality sunk in hard and it was tough on both of us. We did our best to sum it all up and explain the plan to the kids, but understand that we will simply have to take this one day at a time.

WEDNESDAY: I turned 44. Celebrated with friends all day and ended the day at home with family and friends and through the generosity of our community, a table full of food. It was a wonderful day. 

THURSDAY: Through the generosity of our friends and community we had a cleaning crew come and clean our home – I have never felt so spoiled since I have never had anyone ever clean my home. It was a lesson for the boys who had to face the wrath of an angry and frustrated mom who found herself humiliated fat the condition of their rooms and bathrooms. I think over all, simply telling them with tears in my eyes that “I don’t mind cleaning our home. I take pride in being able to climb a ladder to dust, bend over to scrub the floor and make multiple trips carrying goods up and down the stairs to provide a clean environment for our family. However, what they appear to have lost sight of is that I cannot clean our home, nor can I walk a straight line heal to toe and they needed to get some perspective and start taking some personal responsibility.” Note: we have always made them clean up after themselves, but in the chaos over the previous month… they had entirely fallen off the wagon – so don’t judge me that they had rooms that looked like animals lived in.  

FRIDAY: When you spend three consecutive days going and going and don’t nap, one can expect your body to revolt. Mine did. Aside from feeling like the cancer train ran me over, I slept most of the day. But welcomed a late afternoon visit from my dear friend Karen and we spent a few hours out together after the kids got home and then wrapped up the evening with a dance party at home with Harper and Paul playing DJ. 

SATURDAY: We woke at the crack of dawn and rode with friends to what was practically Alabama, to watch our Chattahoochee boys run in a XC meet. It has been difficult for Tucker that we have missed the vast majority of his meets lately and I know he was overjoyed that we were there. We know how hard he has been working and his commitment to his team, practice and putting in the necessary and often difficult and exhausting work to get stronger and faster. Yesterday, he pulled out a 5K PR with a 19:21. I am so glad we were able to be there to cheer him on and give that sweaty boy a post run hug.  

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After a 4 hour nap, we packed it up and went to watch Cooper play in his evening football game, which they won and he played well. We came home, fed everyone some more food and I crawled into bed early and slept until 10 am this morning.

I am exhausted, yet, I am looking forward to a shower, changing out of my PJ’s and watching football with friends and laughing. One day at a time folks and count your blessings. 

Cheers!

 

 

 

 

 

 

 

 

 

 

 

5 thoughts on “One Day At A Time

  1. Hi Jen…. I have been remiss in writing to you. Your postings touch my heart deeply and I think of you often!! You are in the middle of “the challenge of a lifetime”. Your wit, wisdom and courage absolutely amaze me!!! I wanted you to know that in Spin Class when Meagen asks us to set an intention I think of you!!! I spin to send you strength for your battle!! You will remain in my thoughts and intentions…. sending lots of love and hugs… Anne Gerber ( Meagen O’Connell’s Mom) PS: Would you pls send me your address

    Sent from my iPhone

    >

  2. Hi Jennifer,

    My name is Marisa Schostok and I’m from “The Michael Matters Foundation,” which is a non-profit dedicated to providing financial assistance to brain tumor patients in need. I came across your blog and wanted to let you know that you and your family aren’t alone and that we’re cheering for you! Hopefully the “insurance gods” are shining down on you, but regardless of the outcome, you should apply for a grant. Check out our website, hopefully we’re able to help. https://www.michaelmatters.org/

    Truly,
    Marisa Schostok

  3. Sounds like and incredibly busy week. No wonder you are exhausted.

    If all parents were judged by the appearance of their teenage kids rooms, many of us would not make the grade. including us. I couldn’t imagine how my girls lived in that mess though I must say I was not much better as a teenager.

    Stay rested and continue to live life like you always have;and with a spirit and perseverance that cant be matched. . We will continue to pray.

  4. I’ll be praying to the insurance gods! Thinking of you all. I can’t imagine what you and your family are going through. I do know how strong you and Paul both are ❤️

  5. Sounds like you have a great plan in place and that alone I hope gives some comfort. Happy to hear that you are a candidate for Proton therapy. My husband did Proton at University of Fla. and there were many, many people down there being treated for brain tumors….adults and children. Fight with your insurance company if you have to. (We had to😡)
    Also go ahead and get that medical marijuana prescription. We also did palliative care at Emory and they’re great. Takes about a week or so to get the card from the county once you get prescription, and then you order online. (At least that’s how it worked when we did it)
    Still praying for you. If it helps I will say that most that I saw doing the Proton therapy tolerated it well. I’m thinking you’ll do just fine!!!

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