Technically I don't Belong

It’s been over a month now. I’m not talking of the last of my writings here, for that has been well over 30 days. I’m referring to my latest trip to MDA in Houston. The visit encompassed the usual PET scan and lab work as has been my life every 90 days for just over two years. In reality, I have never gone more than four months since my diagnosis in 2010 without testing of some kind to monitor the beast that resides with my body. Some of the scan results have held great disappointment but most have held relief with three little letters; NED. As most are aware by now I was given the “all clear” once more from my physicians in Texas but I was also given something a little bit extra. An outright dismissal from my radiation oncologist and a “call me if you need me” from my oncologist, Dr. Eng. After a thorough review of my history and current test results a new plan for following my health was established. First, my scan frequency was significantly reduced from every 90 days to every six months. A PET was also not required any longer, a simple CT of my chest and abdomen would do. I am able to follow with my local oncologist now so no more of those lengthy, time consuming, stress filled trips to Houston. This is all great news. It is what I have longed for the last almost six years now. My disease is not just under control it is undetectable. Perhaps it is even dead. Not just knocked out, or stunned into temporary silence, but really dead. My street fight? The one I have been in? You know the one. The inspiration for this very body of writings has been silenced. And with this most unlikely scenario, this beating of insurmountable odds, I too have felt silenced. 

I have been thrust back into the thrum of my previous existence. Back to my life. Except my life isn’t there anymore. Time has marched on as it must and I have struggled with which direction to turn and how to “get going” again. One must have a destination in mind in order to move forward. I have been treading water this last six weeks. Going through the motions but not really moving much in any direction. This is not about being happy with my miraculous healing because I am beyond grateful and so overjoyed! This is about purpose. For me, this is a “What now?” moment of epic proportion. As the old saying goes, “To whom much is given, much is expected.” Well to say that I have been given “much”, well, it just feels like the understatement of the century. I have been given everything! So now what? Part of me wants my old life back. We’ve already covered that and it’s not there anymore. My children have finished growing up. They are all young adults now. My illness has left it’s mark on them as well, eliciting some small shift to their being. Perhaps imperceptible to the naked eye, but there nonetheless. I think it has fostered some sort of resilience in them. Regardless, I can’t “re-influence” their coming of age again. My husband has been my anchor for these past trying times and I know it hasn’t been easy. He has held fast all these years and I think he is deserving of a rest. I need to stand on my own and walk along side him. Hell, I probably should be carrying him! He would be happy to have me skipping along next to him toward our future no longer feeling that we have to be looking back over our shoulders to make sure the beast isn’t following us. I guess I have been wandering along beside him now just unsure of what my role is on this journey. I mean, we thought I would be dead by now. I didn’t die on cue. I really didn’t have a plan for the “not dead” scenario. Yet here I am. Work has been the easy part for me. I know who I am as a nurse. I know what I like to do. I have found the balance I need there. I like to work, so that’s that.

I feel I have some role in anal cancer advocacy. I have as much as I have been able to over the last years as my health as allowed, but nothing should be holding me back from this, nothing short of, ginormous task. I am motivated for certain but unable to decide where to begin. Again, me being actually alive to fulfill such dreams is still stunning to me. The connections I have made in support of others inflicted with anal cancer are important to me. Even with the feeling of overwhelming survivor’s guilt I don’t see this changing for me. It hurts more when I connect with them. I want to share my NED status with them so badly it hurts. 

My faith in God is no secret. Credit where credit is due. I am here because of His grace. I can’t underscore enough the role all who prayed for me has in regards to my miracle. I am lost here as well, looking to the heavens for an answer. An answer to the question “I’m alive and well so now what?” During my illness I felt like I had a direction with the ability to support, instill hope and maybe inspire others. Now that I have been freed from illness where does that take me? Like I said, being alive right now wasn’t even a blip on my radar. I didn’t have a plan for it. Well maybe I had a little plan for the “alive” part, but nothing for the “alive AND well” scenario. And here I am, right where I never thought I would be. Not that I ever thought I had any control over the number of my days. It’s just that the doctors were so sure of my eventual and rapid demise and then so shocked with my recovery, even they haven’t been certain on how to handle this outcome.

So here I am not willing to wait and see what life holds for me. I want to live intentionally. Maybe it’s less about where I am headed and more about this moment. Living in a moment that I never fathomed I would have. Maybe those are the moments that we, as humans, can be most powerful. The moments we never thought we would have. This very moment. This very moment where, technically, I don’t belong.

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What a beautiful, eloquent writer you are, Michele! I'm happy for your miracle cure, but I understand your confusion now. I have some of the same feelings just six months after my diagnosis - what now? I'm glad you have your work to keep you anchored, and hopefully time will help some of your uncertainty. I'll keep you in my thoughts and prayers as you journey through your survival - you give hope to so many!
Michele, Lenaecpht like this comment
You could not have stated my feelings right now any better! Thank you for putting into beautiful words what I have been feeling since my last scan in October! You are an amazing writer!
Michele, Lenaecpht like this comment
Michele- I was just thinking of you this morning and realized it had been a while since you had posted....and then here you are! I just know that you will figure this all out but in the meantime I will continue to pray for peace and healing for you and please, please keep writing here as it is inspiring to so many of us in this struggle.
Much love and hugs to you-
Sara
Michele likes this comment
I love how much faith you have. Merry Christmas Michelle.
Michele likes this comment
You are inspiring to us all! Your story will help us and many others. Your recovery gives hope to each cancer patient!! Every time I hear of someone being healed it gives be more faith in my sons recovery! I know God is in the healing business!! We just have to keep the faith!! May God Bless you with your journey of being healed and give you guidance with new beginnings! You conquered cancer so you conquer anything that life has to offer!! May life continue with many Blessings!!! Amen. Xo Lenae
Michele likes this comment
You are a writer Michele. What will you do with that gift? You have been blessed and your "now what" purpose will come to you. What a joy to read your story! I am really happy for you!. Hugs and blessings.
Michele likes this comment
I agree. Boy do I wish I had your gift. My suggestion is to just allow yourself sometime to sit in this space. I did, and the direction will be made clearer to you. For now, I thank you for all of your writings thus far. I also apologize for my delayed response, my new direction has led to me being bo,bearded with emails...200 a day, so I have missed some. I intend to set up different email addresses so that my personal emails aren't lumped in with the professional emails duh. I may be slow, but not stupid. Hahaha
Michele likes this comment
You have been a tremendous advocate and inspiration for many and I hope you continue to be a voice for the many who fear to speak out.
Michele likes this comment
Wow! Your writing blows me away.....I think I had to look up a few words you used:) HaHa! I am so glad for your good health. I think we probably have all pondered 'what do we do with the gift we have been given.' I know I have. Enjoy this gift and by the way, you do belong! You belong for a very good reason:)
Michele likes this comment
You are doing so much for all of us through your writing. It sounds like we are all in agreement there. God bless you and Merry Christmas to you and your family! XOXO
Jane
Michele likes this comment
You speak so eloquently the passionate voice so many of us in the in between feel. I especially resonate with the purpose in going forward. My mother's battle with pancreatic cancer has put a new spin on my one year out of treatment and heading towards remission feelings of cancer victory. Life is a gift and each day a blessing, but often it is the feeling of a purpose that sets us moving forward. I struggle with the days of doctors and discussions on treatments of the "beast". I feel blessed that God has given me the blessing of good health for my mother and myself for so many years, but it is thie feeling of uncertainty that keeps me in the in between zone. Praying for all of those fighting for victory and for those that have survived the fight.
Michele likes this comment
Michelle, I have told you in the past what an inspiration you are to me and when I read what you write I feel the Holy Spirit within it.. I was thinking how many times I get into the scan and think of your hands in your picture... your grace.. your unique special spirit and I thought of the song "Hands" by Jewel which I dedicate to you now.. your hands are small but you are never broken and your kindness resonates in all you do..We are Gods hands and when we give our life to him he will surely take us in the direction that does the most good.. God bless you and your journey my friend.. Merry Christmas.. hugs and love and always prayers Sabina.. The link to song... https://www.youtube.com/watch?v=Fb14dn-qJcg
Michele likes this comment
Sabrina, You are such a dear! I pray for you as I do my entire sorority of sisters here! You are simply precious and I am blessed to know you my friend. Merry Christmas to you as well!
Michele
Beautifully said, Michele! And you know I am jumping for joy at your being "turned loose," so to speak. I do know that you have found a lot of purpose in your life since your diagnosis, evidenced by the wonderful support you have given to me and many others. I hope that will always continue, as we need to hear your story and receive continued inspiration from someone who, against all odds, has slain this beast! I love you for the woman and warrior you are. Now, since you won't be traveling to Houston anymore, how's about a trip to Georgia? :) Take care, my friend, and Merry, Merry Christmas!

Love and Hugs--
Martha
Michele, Michele like this comment
Definitely a trip to Georgia would be nice!
Smurf likes this comment
Come on down! :)
Michele likes this comment
You've done again what you do so well within this update: Inspired hope. And you will continue to do this. And you are the epitome of strength. You are a beautiful example of living a whole life. This "moment" was meant for you to be in it, Michele. And, "this moment" is all any of us have with certainty and is a gift. If we are "awake" in life, then the next moment is an even bigger gift, especially if the people we love are with us. I'm so glad we're all here.
Michele likes this comment
Wow. Please stay with us as you go forward on this journey!
Michele likes this comment
I am glad to hear you are doing well. Have a Merry Christmas!
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Vital Info

Posts

October 3, 2011

Click Here

January 31, 1963

Cancer Info

Anal Cancer

Squamous Cell Carcinoma of the anus

February 5, 2010

Stage 4

2.1 - 3.0 cm

Grade 3

No

As much as possible

Proceeds from my published blog donated monthly

It is a thief

You have to live every day of your life and stay positive :)

Donate $$ to the anal cancer foundation. Raising awareness saves lives!

Is there anything good about poison?

Bone, lung recurrence 9/20/2012

Cancer Center of Kansas, MD Anderson

Bland diet, sitz baths, take your drugs...nobody gets extra credit for suffering.

Talk, talk, talk to somebody. I chose to write.

April 20, 2010

September 20, 2010

Rectal bleeding, itching, sciatic pain. (thought my hemorhoid was acting up)

My blog has been published and proceeds go to The HPV and Anal Cancer Foundation. http://tinyurl.com/72bjjfp

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