My chemo pills are set to arrive today by mail. I will take 4 pills, twice per day with breakfast and dinner. I am debating on beginning tomorrow and starting the day with them, rather than half a day today. I will do 2 weeks on and 1 week off indefinitely. Not sure of the effects for me just yet but time will tell and I am optimistic!
The radiation machine is down so I have not yet begun. I will call today to check on the status. As of now, the plan is to hit my lymph nodes (center chest, right axillary, neck and clavicle) with radiation for about 4 weeks. We will reassess as needed. If the pills are not working systemically against my disease, then we will also redirect to hit my chest skin as needed. I’ll see her weekly so I am confident that she has it under control.
I will see the neurosurgeon in about a week to have my stitches removed and to discuss radiation directed at my head, where my surgery was. More to come, but for now I continue to heal. They are doing a biopsy on what was removed and I am awaiting the results. I will have repeat head CT and PET in about a month. I will continue those regularly forever to track possible progression. I am unable to have an MRI due to tissue expanders. More to come on that in the future.
I am currently being treated where I have been, however I am in the process of obtaining appointments elsewhere as well. MD Anderson in TX won’t see me unless my current regimen is not working. I will take this as a good thing! Hopefully they won’t be needed. 😉 I have tentative appointments in August with Moffitt, Sloan Kettering and Emory. I also have calls out to Johns Hopkins, Mayo and Dana Farber. What I anticipate, is that each center will likely tell me to continue my current course of treatment and to contact them if needed. I also suspect that they will discuss any potential clinical trials for me. I am hopeful!
I am personally beginning a regimen of detoxification for my body. I have been focused on non-GMO, no preservatives in the past but I am stepping that up a bit. I will be eating a diet of primarily fruits and veggies. I will also seek out a nutritionist to ensure I cover all vitamins and minerals. I am determined! My family is forever a top priority and while they will assist and support me in full, I expect them to eat as organic and natural as they have been. 💚
From this point forward, I will never be cured. What I will be – with God’s good grace – is NED or No Evidence of Disease. We will hopefully get a handle on this disease and allow me to live my life while it lays dormant. Yes, this is scary. Terrifying, really. But I am determined to LIVE. I am determined to enjoy all that my family and friends have to offer. I am determined to love HARD, snuggle like crazy and laugh until my belly and cheeks hurt.
That being said, if anyone knows of any organizations that help people like myself, I’d love to hear of them. I want to set myself and my family up for success as best as possible. Wherever you are in the world, if you happen to know of a local or large organization that helps people like me, feel free to share! I will absolutely look into each and every single one. We will have a lot of travel upcoming and I don’t know what the future holds in terms of work and employment so I am grateful for all of the organizations that are available to us.
Much love, my friends. Stay strong and keep spreading the LOVE!!!