I hear you will be coming to town tonight...and maybe even stopping by on my rooftop. I have long understood that your anticipated visit is contingent upon my behavior this year. What's that you ask?....Was I good this year? Did I behave? Have I listened to my mother, done my chores, ate my veggies?
Well, I can assure you that I have most definitely done the latter...I have surely ate well over my weight in kale, cucumbers, and spinach this year. Santa, I promise that I have listened to my momma (most of the time) and to my doctors (all of the time). I have taken my medications, cared for my radiated burned skin, and emptied my surgical drains. I have allowed my body to rest, but I've also pushed it at times when I wanted to feel like my old self again.
This year I have tried to make a difference. I have volunteered my time. I have shared my story. I have spoke to thousands. I have attended conferences and meetings. I have tried to be a source of support for those newly diagnosed.
I have returned to work, albeit on a (very) part time basis. I have started a small business that fuels my creative side. I have invested time, money, and energy into activities that feed my soul. I have traveled, visited friends, and tried to spend as much time as possible with those I love the most.
But Santa, I have to come clean and tell you that I have not been perfect. I must admit, I have fallen off the wagon with my exercise routine. That has really been bothering me and will definitely be a priority for 2013. I have been unsuccessful at giving up my beloved Diet Coke and I'm fearful I may now be considered an "addict". And while we are on the subject of confessions, I will acknowledge to you that I am still a terribly inconsistent flosser.
I have also been hard on myself this year, Santa. I have dealt with a lot of guilt, frustrations, and sadness. I have often felt lost while I try to understand how to live a life where I am not the PT that works the most hours and sees the most patients - where I am not a mother, nor will I be a "mother to be" -- I am a 30 year old woman that often feels worried sick about her husband and mother, should anything ever happen to me.
I am a constant work in progress - learning how to ride these waves until the storm passes, and hoping for many days of sunshine until the next set of dark clouds start to roll in.
Santa, although I am guilty of occasionally losing my patience, taking my husband for granted, or being sassy with my mom - I promise that I have tried my best to make it on your "good list" this year. I have tried to be positive and optimistic, open-minded and understanding, hopeful and grateful - each and every day. I have tried to be a good wife, daughter, sister and friend. I have tried to live each day to the fullest, to restrain myself from useless complaints, and to appreciate all of the blessings in my life and in doing so, take the focus away from the many hardships our family continues to face.
So, if I may ask for just one thing this year, Santa...I am please asking (or more like begging) for a good report from my scans on January 3. I would please LOVE clean scans that show no new growth of this disease, so that I may continue to enjoy this beautiful life. That I may continue to live each day with the same quality of life that I experience now. That I can continue to strive to reach my dreams with Mike. So I can watch my friends children grow up, and so I can be here to take care of my parents one day instead of them taking care of me - that's just not the way it's supposed to work.
Tomorrow morning I will wake up next to my best friend, and feel the weight of my pup at my feet, and I will smile like I do each morning. A smile of thanks for another day. As I make my way to the family room, I won't expect anything from you under the tree. I will hold out hope that the one and only gift I truly pray for will arrive next week in the form of a good report from my oncologist, Dr. F.
Thank you for listening, Santa.
Merry Christmas to you and to all of those that I love.
I'm having a tough time getting into the Christmas spirit this year. I don't know why or what that's about. I think I just feel tired. I keep waiting for the day that the fatigue is gone, but it just seems like I will never feel the way I once did. Maybe I just need to come to terms with that, huh? Everyone keeps reminding me that it's normal to feel this way and that my body has been through so much - and I know all of that - it's just frustrating at times. Dr. F says that for every round of chemo you have, you can expect 1-2 months of fatigue....so, 15 rounds of chemo x 2 months of fatigue/round = 30 months! 2 1/2 years of lingering fatigue - sheesh! I know things could be worse and I don't mean to complain, there are just times where feeling this way starts to bum me out. It has been very hard to come to the realization that I just can't do things like I could before. It has hard to realize that putting in just a 6 hour work day can leave me feeling totally drained. It makes me wonder, if we were somehow able to have children one day - would I truly be able to care for them the way a good parent should? It breaks my heart a little bit to think the answer to that question might be "no".
When the fatigue really sets in, he seems to bring along it's good friend "Ms. Extra Emotional". I am just feeling a little bit more emotional and anxious than normal, but I am sure that also has something to do with the stress of the holidays and the fact that my scans are coming up next week. It seems like I am feeling more nervous about my scans this time, but I am sure I have felt like this before every other round of scans too. I feel a little scared that if they don't come out good, I will blame myself and beat myself up for it. I have felt so tired lately that I haven't been working out and I haven't been cooking and juicing as often as I usually do. I have still been eating pretty healthy, but we have definitely been indulging in some treats over here. I am well versed on how diet and exercise can affect my disease, and although I don't obsess over it, I have been beating myself up about it lately. I don't want to put blame on myself if my disease does end up progressing, but right now, I am worried I might feel that way.
There seems to be some misconceptions out there about what life is like once you are diagnosed with cancer - and I admit, before I was in this position, I was guilty of believing many of them. Like you have maybe a rough year or two and then your treatment is over and life is just exactly how it was before. Story over. Happily ever after. Period. Well, even though I have been blessed with good scans and haven't required changes in my treatment plan, life just isn't ever the same. There are always hurdles (big and small) that no one can prepare you for. I am guilty of thinking my friend, Meredith (who also lives with cancer) must have always been doing so great because "she looks wonderful in her pictures on Facebook". Ugh. How many times do we hear, "but you look so great" even though we might not really feel that way. Yes, I am thankful that I don't look exhausted or look like I have a throbbing back ache but that doesn't mean that those things aren't happening. We just don't post pictures on the days were we might look and feel pretty rough.
I guess that's why this transition has been so difficult for me. Although I knew this wasn't going to be one battle, but rather a very long and continuous war - I must have still thought that once the initial blast of chemo/surgery/radiation was over, that I would feel perfect again. I didn't expect to battle this much fatigue for so long. I thought I would be able to work more by now. I thought I would be able to clean my house, run errands, and cook dinner without my back throbbing by the end of the day. I thought I could go back to getting 7 hours of sleep and that I would wake up feeling rested - rather than experiencing burning eyes, body aches and exhaustion from the moment my alarm goes off.
I am hard on myself. I admit it. But that's just who I am. I have always held myself to high standards and have been able to accomplish anything I want - and this is a tough pill to swallow to not have any control over how this fatigue continues to plague me. Does it completely limit me and diminish my quality of life - no, definitely not. I continue to be busy and fill up my social calendar like crazy because I refuse to just lay down and hibernate. But, it's frustrating nonetheless.
I know I have said this many times, but I am truly BEYOND thankful for Mike. The bottom line is that I couldn't do this without him. When my back hurts, he massages it. When I am exhausted, he grocery shops, cleans the house, does the laundry, cooks dinner. When I am beating myself up emotionally, he reminds me to be gentle with my broken heart and spirit. He is everything to me.
I also want to give a little extra thanks to a few of my amazing friends. You know who you are -- the ones that shoot me a quick text to see how things are going or to say they are praying for me, the ones that make the effort to make plans so we can spend time together, the ones that let me talk their ears off on the phone or when we get together - even if it's about sad things like this damn disease. I truly feel so blessed to have such amazing, inspiring, and thoughtful friends in my life.
Please keep my family and I in your prayers this next week as I head in for my scans on Wednesday morning. It will no doubt be a bit stressful, but I pray that we are learning to navigate these waters with a little less anxiety and fear than we have in the past. I won't get my results until January 3rd. I could have tried to get them earlier before Dr. F goes on vacation, but I wanted to enjoy the holidays without the fear of bad news. So, please pray that we are too overcome with the holiday spirit and joy of being surrounded by family and friends to worry about these results.
Thank you for your continued love and support.
Addendum 12/14/12 - After going back and reading this post, I just want to add that I do feel very good most of the time. And, I don't mean to complain. It just so happens that I usually feel the urge to blog when I am a little bit emotional. It always helps to release my feelings and emotions this way but I hate to sound like I am complaining so much. I am grateful that I feel as good as I do and that I have a great quality of life - despite the annoyance of the fatigue. Thank you for understanding and bearing with me as I try to relay the realities of what my life is really like, while also expressing my gratitude for the many blessings that I know I have.
And because a post is always better with pictures....a quick glimpse into my recent happenings over the last couple of weeks, courtesy of my lovely iPhone....
My blog to keep you all