3 Strikes Your Out

Radiation is nothing new to me. With my first diagnosis of breast cancer, I had 30 rounds of radiation, every single day excluding the weekends. Honestly, in the begging the worst part was having to drive 30 minutes to the hospital every day for a three minute treatment and then 30 minutes back home. 

Towards the end of my treatments it started to get a little harder. I was experiencing a lot of fatigue. Burns that hurt worse than child labor and blisters that were unforgiving.  This time around I was prepared. I know all the creams to use. I know all the tricks to help ease the side effects a little. 

Wonder how long it’s going to take me to realize I know nothing this time around and am usually wrong when I assume to know what to expect. 

It didn’t take long into my first appointment with, who I will refer to as Dr Aladdin, to know that this is a whole new world. (ha! See what I did there? Told ya not to give up on me)

After a long discussion about not wanting me to drive for 6 months... yea, I said SIX months; do you know how hard it is just to not be able to go get coffee in the morning, or my afternoon McDonald’s Diet Coke?!... he went on to explain that radiation to the brain was absolutely nothing like the radiation I received on my chest. When undergoing radiation on the chest the objective is to bring it to the skin to ensure you are getting all of the rogue cells that could be floating around. Radiation to the brain is much deeper so this time around there would be no burning of my skin. Huge relief. The thought of having the burns I had on my chest, on my head, makes me hurt all over. However; in a similar aspect the same reference was made between the two treatments in that surgery removed the hay bale and radiation needed to come in behind it and pick up all the loose needles that may have fallen.  He went on to say that the side effects were a little more serious than just surface burns. We’re talking short term memory loss, hair loss, the potential to cause a new cancer in my brain from the radiation, damage to healthy brain tissue that could cause seizures or more headaches, and the list goes on. The reassuring part is that he said if it was a family member he was speaking to, it would be without a doubt 100% the option to choose radiation above the side effects.  Oh. I should also mention that I will more than likely lose my “executive functioning” (hopefully temporary). What this means is I shouldn’t balance a checkbook anytime soon, but who does that these days anyways? I’ll struggle with numbers and may add a 0 here and there by mistake. What I heard when he was telling me this was  oh my Target budget just doubled. What do you mean I spent $300? I thought I only spent $30. 

You gotta find light in the little things. 

So after meeting with Dr. Aladdin (seriously. Did I mention he has a cool long black ponytail, wears button up shirts with the first couple of buttons undone exposing his collarbone tattoo, skinny pants with hipster loafers and no socks. He’s one hip guy), I was taken back to be fitted for my mask. It was actually kind of nice. Like a facial, at first. But because I’m extremely claustrophobic they sedated me a little with a nice little Valium cocktail. I found out real quick why. 

They laid me on a table where there was a warm hard plastic, net like material. Because it was warm it was able to mold to the shape of the back of my head. Then after they tucked all of my hair around my face they put the same material over the top of my face. It was like getting a massage. The net was warm so that it would mold and they made sure to press it into every crevice of my face. I was unaware going into it that they didn’t leave a mouth hole or a nose hole so I’m glad I got that Valium! After getting it snug around my face they screwed the front piece and back piece together. This will make sure that I don’t move during radiation and that the target areas will be hit in just the right spot by the cyber knife radiation laser. 

During the actual treatments they also place a black metal bar over the mask, making it tighter on my forehead by screwing the mask to the black piece, then the black piece to the table. They mean buisness. You cannot move. The mask was complete and I just needed to wait 2 weeks to start radiation. This gave Dr. Aladdin time to look at my scans and map out exactly what he wanted to do. He had some concerns with waiting the two weeks because of a potential reoccurrence but kept me on the steroids to make sure the swelling in my brain was under control. Honestly, the steroids have kicked my butt. I don’t recognize myself when I look in the mirror, I’m constantly hungry while trying to maintain the mandatory low sugar diet (do you know how bad I want all sugars? Krispy Kreme donuts especially),  and cannot get more than 3-4 hours of sleep at night.  

I’ve found myself needing to be in control of everything. I don’t know if this is a grief symptom from my new diagnosis or if the steroids just have me feeling like a ball of energy that needs to crash but can’t. But by 7am I am out of bed, laundry done, house vacuumed and cleaned and out of the shower waiting for Raylan to wake up to start our day. I’m still getting help throughout the day because my energy level crashes mid-day. ((Wonder why)). But I feel like if something needs to be done, it has to be done RIGHT then and there. I’ve heard from several nurses and doctors that this is a normal response to the trauma I’ve endured over the last couple of weeks. It sounds dramatic to use the word trauma but when you think about it I guess that’s exactly what it is. If something were to happen to me again like it did three weeks ago, I need to make sure my house is in order. That Tyler and Raylan have groceries and clean clothes. And that speck of dust that’s been staring at me on my dresser, needs to be windexed right away. So while I’m sleeping my mind is racing with everything I need to do. My body is tired but my mind won’t let it rest. Eh. It’s normal. Or at least my new normal. Once I finish radiation I will start to taper the steroids and then we will see if it’s really my mind and emotions or if I’m just on a really big steroid high. 

June 16 I started my first radiation. It was decided I’d receive 3 treatments, each lasting about 25 minutes and I’d receive a Valium each time to help with the anxiety of the mask. This will also maybe help me nap and rest when I get home instead of feeling like I need to clean. ((Doubt it)) 

I’m not going to lie. I’m pretty nervous about the thought of short term memory loss. Will I know I lost my memory? Will I just forget what I had for breakfast that morning? Will I be aware that if I forget something it’s because I actually forgot it happened and not because I think the person talking to me is crazy and making it all up? Will people forever look at me and think she has short term memory loss. I can tell her it happened this way and she will never remember.   

Dont think you can play games with me. I’ll still argue my points of view! Haha 

So today is June 22. At this point I have had all three valiums, all three radiation treatments and I am done! Hopefully forever. The side effects so far have been what we anticipated. I’m very very tired. I’m having a hard time focusing on words and numbers. Picking out and writing Father’s Day cards was a JOB. And I’m losing some words when I talk. The day after radiation I’m usually the worst. Heachaches and the fatigue is stepped up a knotch. But the important thing is radiation is complete! The radiation will continue to work for months, so the side effects will be lingering. 

Radiation treatments are behind me, although I have several months of enduring the side effects, if not long term I am so excited that I can check the box of completion.  This  is just one small step towards moving  forward and achieving my new normal with a life long disease but Check mark! Pat on the back. Let’s keep going forward. Let’s fight this. Let’s maintain this and let’s get back to living as soon as we can. For now I’ll get back to cleaning things I just cleaned yesterday.  

🙏🏻💕

* I should also take a moment and put a brief insert about the events that took place this weekend. On Friday night I woke up around 2am with leg pain, in both legs below my knee. It was so bad that I couldn’t seek comfort in any position, I couldn’t stand because my legs were not working, and it hurt so bad that I was hysterical in tears. Thinking it was cramps from all of the steroids we decided to give it some time and Tyler got me settled in bed with a muscle relaxer. This helped enough to put me to sleep. Around 5 am I woke up abruptly to the same pain. I immediately called the Oncall onchologist (who just so happened to be my old onchologist I just transferred out of care from. I’m sorry I cheated on you with a new doctor. This isn’t awkward at all) He was very firm in his instructions to get to the emergency room right away. Raylan was still sleeping, and luckily my in-laws live less than 7 minutes up the road. After lots of pain and tears in the car, and Tyler putting his flashers on while going over 100mph (I don’t think he went that fast when I was in labor. Actually come to think of it, he stopped to get gas when I was in labor), we got to the emergency room around 7am. I was unable to walk to the door so we had to get a wheelchair for assistance. Of course there were new people at the Covid screening desk, completely unsure of what to do and apologizing that it was taking so long. At this point Tylers patience was wearing thin and he explained that I was in a lot of pain and they needed to just take our temperature so we could get to a doctor. Once I was in the room, the process wasn’t long. The doctor was in to see me with a plan. There were labs drawn, unfortunately the IV was no good (big surprise), so three blown veins later they were able to start me on an Iv with some really good pain meds and anti-nausea medication. I slept for about 45 minutes when the ultrasound tech came in to rule out the potential of blood clots in my legs. After this, there was a pause in care. After about three hours of not seeing or hearing from anyone we asked for nurse assistance because my pain medication was starting to wear off and we wanted answers. When the doctor came in he sincerely apologized for forgetting that we were still there.  Tyler and I understand, if we were rushed to the emergency room in a life or death situation we would want to be treated before the doctors were worrying about releasing another patient. But we were ready to go home and I was starving. He explained that there were no concerning signs of blood clots and all of my blood counts looked great. We’ve narrowed it down to nerve pain or Neuropathy that could be caused by anything im going through right now (medications, swelling, radiation, surgery recovery, etc). He shot me up with some more pain meds and had me out the door within 15 minutes. This was a terrible idea because the pain medication made for an extremely ill ride home. Forget the food, we needed to get home before I was back in my 20’s puking on the side of the road after I left the bar. Once we got home, I was able to get my new prescriptions to help manage the nerve pains. I was so high on medication that I slept most of the night. The following day the onchologist called to check in and go over all of the results from the ER. He agreed that it was nerve related, most likely due to the swelling from the steroids or swelling from radiation. He seems to think that the pain will subside once I start to taper the steroids next week. Until then, while it was beyond painful, it was nothing too concerning and we are now able to maintain the pain and make it tolerable throughout the day with medication. Just don’t ask me to walk up and down steps. Thank you for everyone who reached out with prayers and support. As always we feel all of the positive vibes coming our way and we are so grateful. 🙏🏻💕