The alarm starts beeping at 8:10am and it's amazing how exhausted I feel. Wait, how is this possible? Didn't I just sleep for 7 or 8 hours? Ah yes, then I remember that the word "sleep" doesn't really have the same meaning to me anymore. Every night I crawl into bed and shiver in my pj pants and tank top, hoping that the chills will subside once I snuggle up next to Mike since he radiates heat like nobody's business! Once I stop shivering, my body starts to relax and I begin to drift off to sleep. Could be just an hour or maybe three or four and I awake to feeling like I'm on fire - hence only the tank top to bed. Sweating, wet, and feeling like I can't rip off the covers fast enough. Oh hot flashes and night sweats, how I loathe you. Thank goodness for my trusty remote to my ceiling fan because I honestly feel like I am sunbathing in the middle of the Sahara. Poor Mike usually wakes up to the cool summer breeze that I just created during the dead of winter in our bedroom and asks through his sleepy haze if I can shut it off yet. Sorry dear, grab another blanket because I am roasting over here!
After awhile the fire slowly dies down and I am able to curl back up in bed, pull the covers up and try to fall back to sleep. But, have you ever worked out, sweat, and then come home and sit around for a bit in wet clothes? If you have, you know that the next thing that happens is your body gets freezing cold and chilled. So here I go on the opposite extreme - shivering, slightly pull on Mike's shirt which he instinctively knows means to roll over and spoon me to try to warm me up. Do I get out of bed and put on a long sleeve shirt? No way Jose! Because by now you should see the pattern and realize that long sleeves will be my arch nemesis when I am hit with the next hot flash in another few hours. And so the cycle continues.
All the while, tossing and turning from one side to the other. No longer able to sleep on my stomach like I have for 29 years due to these tissue expanders in my chest. I am naturally more comfortable on my right side compared to my left but I often awake in the night worrying - "have I laid on my right arm for too long", "am I causing too much compression", "is this going to cause lymphedema issues", "crap, my hand is numb, better turn over". Then mix in the bouts of relentless itching across my chest that often happen in the night - but I'll get to that in a bit.....Ah yes, now I remember why I am so tired when that alarm goes off.
After a few minutes of hitting snooze, I drag myself into the shower, begin my morning routine, then off I go to radiation. I have completed 26 treatments so far, every Monday through Friday, and pretty much drive to Karmanos on autopilot at this point. It's my own personal "Groundhog Day". I leave at the same time every morning, take the same route, park in the same lot, am greeted with the same cheerful smile and "Good morning, Meghan!" from Felicia at the front desk as I scan my personal Karmanos ID card to check in. I immediately head to the private changing area for radiation patients and go directly into Room #2. Not sure why but I have gone into Room #2 for each of my 26 treatments and I am sure I will for the remaining 7. I lock both doors on either side of the room, place my purse in my locker, change into my gown, open both doors back up and head out the opposite side I came in - into a private waiting room just for radiation patients.
There is a row of comfy reclining chairs, a nice flat screen tv, and even a little basket of snacks. They treat us right at Karmanos :) For the first half of my radiation sessions, my appointments were in the afternoon so I often had to wait in my comfy chair for a few minutes until my name was called. Right before Christmas, I switched to the mornings when a spot opened up so I could just get radiation out of the way and get on with my day. Since making that switch, I rarely ever even sit down in the waiting room. The second I come out of Room #2, one of my lovely radiation therapists is standing in the doorway, greeting me with a smile and telling me they are ready for me.
As I exit my cozy little waiting room, I head down a hallway that has a massive door in front of it. Plastered on the door are bright and bold "CAUTION" signs welcoming you into the wild world of radiation.
As I turn the corner at the end of the hall, I am greeted with this big guy pictured below - the external beam radiation therapy machine. He's not as intimidating as he looks, I promise. The tv screen in the upper right corner of the picture below has my lovely face plastered on it (a really hideous picture, I might add!) and it's at that point that I have to say, "Yes, that's me. Let's get this party started!" I untie my gown, jump up on the table and get myself in perfect position...top of head aligned with the top of the headrest, right arm out of gown, left arm at side with hand on hip, legs straight and uncrossed, feet together, right arm stretched out to side and supported in armrests, head turned to left side. Normal breaths, no deep breathing, no holding the breath. No itching, no coughing, no movement of any kind. Relax those muscles, let the shoulders come down, release the tension in your traps. Like I said, it's Groundhog Day - I have this down to a science by now.
The picture below allows you to see what is underneath the sheet that I lay on. The circular blue object is a headrest, and the two blue objects on the left are where I rest my arm in order to leave my chest and axilla exposed. There are numerous dials and switches, allowing for customization for each patient. They have this set up perfectly for me before I enter the room each day based on the measurements they collected during my very first visit.
Once I am positioned properly on the table, the ladies read off various numbers from the tv screen which list all of the parameters for my radiation treatment. They use those numbers to make sure I am in the exact same position for every single treatment. The table is elevated, pushed back towards the machine, and moved centimeter by centimeter into the right position. They then turn off the lights, which then allows green laser beams to become visible. These laser beams are used to make sure they line up with my radiation tattoos (yep, permanent ones!), so that they can ensure I am in precisely the same spot for each treatment. Once I am all lined up and ready to go, the therapists turn the lights back on, race out of the room, and close that huge door I previously mentioned in order to protect themselves from the radiation.
The first round of radiation comes directly head on while my chest is positioned exactly under the circular part of the machine pictured above. I know shortly after the ladies leave the room that a loud noise will begin, accompanied by a red light indicating that radiation is taking place. I close my eyes at that very second, as I have for each treatment session since the very first day, and I visualize the radiation destroying any last remnant of disease left in me. Not just in my chest, but everywhere. I visualize these nasty cells being vaporized and replaced with nothing but healthy and revitalized tissue. When the room becomes quiet again and the red light shuts off, I open my eyes. The ladies come back in and change the position of the table to line me up for treatment #2 which comes on an angle from the left side of my chest. The huge machine rotates around me until that circular arm is in place and after I am properly positioned, the process starts again. During the third and final round, the arm of the machine rotates all the way around to the right side and radiates from that angle. Within 10-15 minutes or so, I am hopping off the table and on my merry way.
Up until last week, I also received a bolus treatment every other day. This meant that a soaking wet towel was placed over the entire radiation field over the right side of my chest and axilla. The wet towel simulates my skin so that the radiation treatment ends up being more superficial those days, targeting my actual skin versus the deeper tissues in my chest. This was stopped last week once the skin on my chest started to become redder and more irritated. The week after Christmas I started to get more of a burn on my chest and then little red bumps appeared, similar to what happens when you get sun poisoning. Dr. R, my radiation oncologist gave me hydrocortisone cream to start applying on those areas in addition to the Aquaphor that I have to put all over my chest three times each day since radiation started. Over the next few days, my skin became redder, more itchy, more irritated. It was so bright red, like a very severe sunburn. Then on Monday I noticed a blister - uh oh, this is no good. I stopped using the hydrocortisone one day and swore I noticed that my skin looked better. Well, I have come to trust my gut instincts so much more these days and I started to feel like maybe I was having some sort of reaction to the hyrdocortisone. To make an even longer story shorter, although it would be extremely rare, Dr. R believed me when I told her my theory so we stopped the hydrocortisone and switched to another topical steroid. We also stopped the bolus treatments at that time to give my skin a break. Well, what do you know - my skin has become dramatically better ever since and it turned out I did have an allergic reaction to the hydrocortisone. I am so glad we figured that out and that my skin is a little less irritated.
Aside from the skin issues, the fatigue is really getting to me. I am still staying super busy but I feel exhausted by the end of the day - sometimes even by the middle of the day actually. :) I have also headed back to the gym so that wears me out a bit too, even though I know it's worth it. Katie and I were always gym buddies before I was diagnosed - we are a perfect pair together because when one of us doesn't feel like going, the other one makes us go and get that workout in. Well, my gym membership has been on hold all these months during treatment but I knew I wanted to go back right after the new year. Katie just had sweet little Alice this fall so she was just now ready to go back too. It was perfect timing for us to get back into the groove together. We made it to the gym four times together last week and we plan to do the same each and every week - and it feels great! I am taking it slow and not being too hard on my body but it sure feels good to be exercising again and I am more motivated than ever now that I know my health truly depends on it!
That's the latest and greatest with me. Threw a lot of info at ya this time, huh? Well, if that wasn't enough and you would like to learn more information on exactly what radiation therapy is, the purpose and how it's administered, please click here.
Addendum - After writing this post I just found out that some things may change and Monday might end up being my last day of radiation. Yay! It's a long story and a little confusing and I won't even know until I get there on Monday if it's my last day or not but that would be great to finish up a little early. Keep your fingers crossed. :)
Before I wrap up, I would like to wish my big bro a very HAPPY BIRTHDAY! Jeff, I know I was the annoying little sister that followed you around, bugged you and your friends, and always got on your nerves as kids. But I am so grateful that we have grown up to be such great friends. You have always been there for me - sticking up for me to an elementary school bully, driving 5 hours to pick me up in college just to immediately turn around for the drive back just so I could come home for a visit, to bringing me dinner and hanging out when I am not feeling like getting off the couch these days. You have been so supportive these past 10 months, and I hope you know how much that means to me. I love you very much and I hope you have the great birthday you deserve. Looking forward to celebrating with you tonight.
ps - please don't kill me for posting these pictures of you...I couldn't help myself! :)
We've come a long way from our curly little afros...except I happen to be rocking an afro again these days - darn it ;)
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