I couldn't remember if I had a previous post with this same title, but it doesn't even matter if I repeat it because there is no better phrase to describe how I feel lately. I am exhausted. Wiped out. Completely drained. I don't think all the effects of radiation hit me until the very end, and now that they have, I am reminded of what true fatigue really is. It is much more than feeling a little sluggish, having heavy eyelids, or wanting to kick your feet up for a few minutes. The fatigue I feel is the kind where I could fall asleep at a red light. I wake up with my eyes burning as if I never slept because even 9 or 10 hours of sleep isn't enough. It's a level of fatigue where I arrive at the gym feeling like I already worked out for over an hour even if I just woke up. It's hard to explain unless you have experienced it. I will admit, however, that I have also been doing way too much and trying to live my life like the "pre-cancer" Meghan did...and I guess I am realizing that I am just not ready for that yet.
Thankfully, Monday did end up being my last day of radiation. Yahoo! It is so nice to have this phase of my treatment behind me. Although I do love Karmanos and all the people there, it is really nice to not have to wake up each and every morning and drive there for treatment. Of course, I am still there a few times each week for other appointments, but the fact that radiation is now over is a huge relief and weight off my shoulders. I was a little fearful throughout all my weeks of treatment that my tissue expanders would rupture (a 20-30% chance), or that I would have a terrible skin reaction. Aside from what now looks like a pretty good sunburn, and of course the fatigue, I faired well through the entire process. I will continue to apply my topical steroid and Aquaphor on my skin three times each day and will have to wait and see how it heals. Dr. R (my radiation oncologist) informed me that the normal course of healing is that the skin will stay red for awhile, then turn darker and almost tan looking, until it finally peels off.
It worked out great that my last day of radiation was MLK Day and Mike had the day off. He came with me and snapped my picture as I got to finally ring the bell signaling the completion of radiation. All of the staff and patients clap, hug and celebrate you once you reach this milestone.
Instead of things calming down a bit once radiation ended, the exact opposite happened. I guess subconsciously I thought I could return to my old habits of running around like a mad woman, accomplishing a million things in a day. I succeeded at that for a couple of days but the reality of what my body is dealing with once again set in like a huge smack in the face. I doubt I will even get off the couch today.
Between Monday and Wednesday last week, I had 6 appointments to go to! I swear, you would think I have all this time on my hands since I am not working right now but managing my appointments and medical care is seriously like a full time job. But I also got to do fun stuff too like the weekly Monday take-out and reality tv show night with Katie, a lunch date with Elizabeth and her little Luca, and I spent the entire day on Thursday in Ann Arbor with Julie, Will, and sweet 6 day old baby Mae. Check out this cutie....
Last night we had a great family get together at my Aunt Erin's house with my brother, cousins and their spouses. It was so nice to spend time with members of my family that I don't get to see nearly enough. Before we knew it, it was after midnight and I was finding myself struggling to stay awake.
This week will include another few doctors appointments and my two monthly injections into my abdomen - fun times! ;) But most importantly, we have learned that Mike has to have a surgery of his own on Tuesday. It should be a very straightforward outpatient procedure to remove a cyst on his tailbone that he has had for a few years but has really started to become a problem. In true Mike fashion, my selfless husband has not really been honest with me about how much pain he has been in and how much this was bothering him, until recently. The surgeon said it will likely continue to get worse and that it needs to come out. Due to some travel plans and Mike's upcoming baseball season, he wanted to have the surgery ASAP. So it looks like we are going to have a little bit of a role reversal for awhile....Mike will get to be the patient and I get to play nurse. To be honest, I don't like it. I am so grateful that normally I am the one that's the patient because I would be such a nervous wreck if I had to watch Mike go through what I have been through these past few months. Even though this procedure should be smooth sailing, I am worried and don't want to see Mike in pain. The surgeon said that these wounds almost always get infected so rather than closing it up all the way, the site will be left open and I will have to pack it with gauze and keep it clean. Please keep us in your thoughts and prayers for a quick and easy procedure and complication free recovery. Although Mike is hoping to return to work after one week off, his surgeon said a full recovery should take 4-6 weeks, which means no running! If you know Mike and how many miles he runs every week, you know this will be a huge sacrifice for him. Say an extra prayer that he doesn't lose his mind, or drive me crazy with his restlessness. :)
ps - I forgot to mention that I did see my oncologist, Dr. F for my 6 week follow up since my last blog post. No huge news to report except that my scans are now scheduled for the end of February. I would appreciate all the prayers you can muster up that my scans continue to be as great as they were last time - progression free and healing taking place in my spine. Thank you! Thank you! Thank you!
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 ;)
I woke up on New Years Eve and while still laying in bed next to Mike, I shouted, "Peace out 2011, adios, sayonara"...and I might have even thrown in a four letter word about how much I hated 2011 and how eager I was to bid farewell to the year.
But then I thought about it a little bit more and came to a few realizations. Not to sound dramatic, but dealing with a life-threatening illness gives you a perspective on things that's greater than what you realized was even possible. The more I thought about it, the more I realized how wonderful 2011 was, while at the same time being the most devastating and difficult year of my life. Doesn't seem to make a whole lot of sense when I put it like that, huh?
Well, although 2011 brought the "C word" into our lives, the year was also filled with many other amazing things....
- The birth of 4 of my best friends babies
- Mike & I took a fabulous trip to Seattle just weeks before I was diagnosed
- We were spoiled with 2 visits to Michigan from our favorite Floridian friends :)
- We were still able to attend 6 of our friends/families weddings (out of the 12 we were invited to)
- Experienced the unforgettable 3 Day For a Cure event with my amazing team and all of you that came to support us
- We not only visited Seattle, but went to Petosky, Nashville, Ludington, Sage Lake with my girls, and Fort Lauderdale - all while I was undergoing chemo - and Chicago the month after my surgery
- Had 3 of my wonderful sorority sisters come visit for a weekend while they were here for the 3 Day For A Cure event
- I went to my first U of M football game at The Big House! ...and it was their first ever night game....and they beat Notre Dame!
- I met Kris Carr - a true inspiration
- Had a visit from Sarah, one of my best friends and roommates from college who came all the way from Denver
- Was able to get together with 4 more of my wonderful college roomies just after Christmas
- Mike and I had the huge honor of becoming Godparents to sweet little Alice
- I have met and forged friendships with so many amazing people that I likely would have never known if it weren't for my diagnosis this year
- And had countless other wonderful moments with our friends and family - whether it was a quick visit, a night out together, or the incredible "Love Fest" - we have made so many great memories with everyone!
So while it would be easy to say how awful this year has been, how much heartache and tears it has caused, how much we have had to give up and miss out on....how can I possibly look at it in such a negative way when I look at that list of incredible moments from this year.
During a time when I could have curled up in a ball, stayed under the covers and felt sorry for myself, I chose to live! To get up each and every day and try to make the best of it - whether I am feeling a little sad or achy, tired or frustrated - I have never let it stop me from living my life and doing all of the things I love. I have heard many people say that cancer was somewhat of a blessing in their lives because it taught them how to live life to the fullest and enjoy each moment. Well, I am so thankful that I have always lived this way. Mike and I have always packed our calendars with amazing things like 10 or 12 weddings in a year, weekend getaways, and countless nights with friends. Sure, my cancer treatment has slowed me down a bit - but it has not taken over my life or stopped me from creating these lasting memories with the people I love.
Thank you from the bottom of my heart to each and every single one of you that has helped me get through 2011. Whether you are one of my best friends that I talk to regularly, a neighbor that waves hello on the street, or someone I have never met that prays for me and my family....Thank you! I have no idea how I would have made it through these difficult months without you. I feel your love and support each and every day and it is what helps me pull back the covers and get out of bed on those tough mornings. I am so grateful for all of you and the way you cheer me on, boost my spirits, and inspire me to keep going.
I can only imagine what incredible blessings and memories this next year will bring. The great thing is that with Mike by my side, and all of you supporting me, I know that I can get through anything. If 2011 has taught me anything, it's that I am a lot tougher than I ever gave myself credit for. I know I will be able to overcome any obstacles in my path and move on to bigger and better things. I am confident 2012 will bring even more happiness and great memories than this past year did and I pray that it brings me a renewed sense of health so that I am able to tackle even more this year and start to give back to all of you that have helped carry me through this year.
Mike and I would like to sincerely wish all of our friends & family (and all of you that follow that blog that we have never even met!) a happy New Year! We wish you nothing but health and happiness for 2012...thank you for all you have done to support us through 2011 - we are beyond grateful!
xoxo, Meghan....and Mike too! :)
Here's a few quick snapshots from some great times with our friends over the past week...
Momma Jan, Court, Kate, Kel, Alice, Wrig and I...always a blast when I get together with some of my very best girls!
Mike snuggling his sweet little Goddaughter during a visit after Christmas
Some of my wonderful college roomies from 210 Campus Avenue :) So grateful we were able to meet up in Ohio after Christmas. We missed you Nikki, Kim, Sarah & Jules!
Our last pic of 2011 - just before midnight ♥
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