Its Sunday night as I write this, I worked all weekend and just finished all my weekend “errands and cleaning” and finally got to sit down... and I can’t help but laugh because there is no other word than chaos for my life currently!
RADIATION - THE GOOD
Treatment is working just as planned, the radiation oncologists are awesome and very happy with how well the proton beam is targeting the large area of my body (left breast, lymphnodes, surrounding area) to fight this recurrence. As of today I have completed 8/33 sessions! Also, the technicians are freaking awesome! I feel like I am visiting friends M-F at my appointments! I have been asked a lot if I am working during this - I have worked fulltime through all treatment except for 3 weeks off post double masectomy. Right now I work Sat-Wed during radiation with my weekends on Thurs/Fri! I am blessed to drive back and forth after work (1.5 hour each way) on Monday and Tuesday, and then spend the night with our good friends Wednesday and Thursday nights and head back to Gainesville on Fridays. Justin and I dont get to see each other much with him working nights but we can do anything for 6 weeks and move past this “active treatments“ stage!
Here are some things I recommend/things to know if you or a loved one goes through radiation:
Push yourself to be outgoing even if you aren’t naturally - this will help you feel more comfortable if the techs get to know you and what you like and don’t like as you get set up!
Ask if you can bring a playlist to blast during treatment ! I love picking my songs for treatment and set it up called “radiation playlist“ - it has become a joke to see how many country songs I can introduce everyone to each session.
You don’t feel anything except the little bit of uncomfortableness of whatever position they have you stay still in. You don’t feel the beam at all, and even the stupid mask over your face becomes “normal”
When I get back to change it takes about 30 minutes from walking in to leaving which is awesome. So much different than the long chemo days!
Check to see if your center posts gantry times online ! It’s nice to know if your room is on schedule or delayed before you get there
Audiobooks help boring car rides if you travel back and forth alone (also it’s not like chemo with pre-‘EDs pr anything so its totally safe to drive yourself!)
If you do have to drive yourself back and forth maybe find something fun to do in area it’s a lot of driving for a 30 minute appointment. I have ventured out to come cool places to eat, and joined a local Jax yoga studio for a month :)
IN CASE ITS NOT CLEAR THIS IS TOTALLY DIFFERENT THAN CHEMO. While I handled that well, there is a big difference in how you feel during systemic chemo and radiation. This is overall much easier, but don’t worry you’ll get through both if you need it ! :)
RADIATION CHAOS - THE BAD
MY CENTER GIVES ME MY NEXT APPOINTMENT AT THAT APPOINTMENT AND MY TYPE A, OCD PERSONALITY IS DYING A SLOW AND PAINFUL DEATH. For example tomorrow night on Monday I have radiation at 520 pm, when I get done with treatment my card will tell me the time for Tuesday’s appointment. The planner in me is dying from this, but I have decided this is Gods reminder that it’s okay to not have everything planned and to live in the moment. I hear the message loud and clear and can move on now in case anyone has any connections with him 🤣
Around treatment 6 I started getting a scratchy throat, by session 8 it’s full on sore throat 24/7 and hard to swallow. Feels like I have a lump in my throat at all times and I have to be careful with foods that are coarse. I was warned about this side effect ahead of time but still isn’t something you exactly want to deal with.
I am allergic to tegaderm so we draw on me with a sharpie everyday so they can align me for treatment - that sharpie ruins your sheets if you sweat really bad when you sleep like me :) so wear a shirt to bed and don’t be like me if you have sharpie all over you!
When other patients take forever or the machine has malfunctions of some sort the schedule gets way messed up since they book us literally every 30 minutes. This can make for some annoying waits in waiting rooms after rushing from Gainesville.
RADIATION CHAOS - THE UGLY
I can’t even summarize all the chaos with paying for this completely but I am going to try - I am working with the alliance for proton therapy to see if I can stop this from ever happening to anyone else. Long story short, my insurance is paying for this completely but the proton therapy I nature wouldn’t believe they would and I had to pay $34,104 to start treatment. If I had not had means to be able to front that money I would have not had proton therapy, but regular radiation since I was convinced my insurance wouldn’t cover this -putting me at increased risk for later heart and lung issues.
My work couldn’t explain if proton would be covered or not which blows my mind
When I reached out to CIGNA and was told I needed to prove medical necessity I was talking to a 3rd party vendor which denied it and was different coverage than a patient with HCA specific CIGNA
HCA Cigna after a month of trying to figure out who to talk to swears its a covered benefit and no authorization or medical necessity is even needed
A letter is sent to proton therapy institute and I get a patient advocate to try to get them to understand insurance says they will pay
Cigna wouldnt do any type of authorization request cause it wasn’t needed as it was an in network provider and a covered benefit
Proton Therapy wouldn’t accept the letter form my insurance although in net work provider and mandated I pay up front then be reimbursed
I took a loan on my 401K, maxed our our credit cards, paid $15K in cash, and had 5K loan from my parents to front the $34,104 to start treatment on time (July 9)
Cigna processed and paid all treatments thus far without hesitation
I am still in process of obtaining a refund for the money I paid up front
It makes me want to throw up to think this happens to cancer patients ever. But, especially to ones who spent months doing the back work to prove insurance was going to pay and still had to front the money. It hurts my heart to think of other patients walking away from a possible superior treatment in terms of side effects long term (depending on cancer and placement of tumor etc) because they don’t have money to COVER THE COSTS UP FRONT for a Covered benefit. I may be almost 1/3 of the way with proton therapy but I believe my work in policy and advocacy for this issue is just starting.
I hope to keep updating weekly during radiation! Until next time! Sami
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