So I spent time this weekend with scanziety over something that isn’t even a scan nor is it a different thing or out of the ordinary. It is something I do quite often with my clinical trial where I go in every 3 months for CBC blood work - so not even tumor markers- and then I get a physical exam of my remaining breast and my mastectomy side and then I get my next 3 months of trial pills.
There is no rational reason for me to be fearful and thinking that I will be told “that’s not good” - nothing has changed, I haven’t had any weird side effects so thank God about all of that - and yet I am still consumed with this fear that something will happen to ruin our immediate vacation.
I have realized that I am thinking in terms of my kids all of the time - what mother doesn’t I guess - but for this cancer mama there is so much that I have no control over even more so than “normal” moms. What do I mean by that? Well, you see I feel guilty that I got sick. I know I didn’t make myself sick I know I didn’t ask to get sick but it happened and though it did effect me it also effected my kids - sometimes more and more...
So now with this random unnecessary scanziety I know what I have to do. I have to recenter away from how things such as bad Dr news affects my kids and instead just think about me - me the kickass person who said cut the boob off, who sat through 8 rounds of chemo with a smile on my stupid face and worked full time during it too then got laid off then went through radiation and started sharing to help others in so many ways between career after cancer seminars the free kids book and sharing my story period.
I have to think about that because although my kids maybe couldn’t handle any bad news (God forbid) I know I can because I did ... so I have to do some deep breathes and just know no matter what I will go to Sloan and then to my family vacation after. No matter what. This is what I do in the time between.
No matter how much I am happy and smiling and so damn happy to be alive, I do still get down and feel "off". Today is one of those days. I am proud to say these days are few and far between but that is not by "nature" - that is because I actively work hard on it every damn day.
Most days, when I get caught up in all of the things going wrong (and trust, there are a LOT), I hit myself mentally with the memory of how I felt when I was first diagnosed with cancer and going through treatment and how much I wished and prayed for my "old problems" back and force myself to recognize how damn lucky I am that treatment is over and pray that it stays that way...
I try to imagine how it would feel God forbid to be told the worst news - if God forbid the cancer came back or spread - both things I try NOT to remember and worry about but when I get all caught up in petty b.s. I find it helps me to remind myself of what really is a "worst case scenario" and what is just that petty b.s.
That being said, I am only human and I do get upset at times or worried or dare I say it "down". I can not really ever even claim to be "depressed" because I am naturally buoyant by nature and really have never in my life felt something that could clinically be called depression because I am fucking perky and trust me, most people can only handle me after a few cups of coffee.
Today, I am feeling upset about stuff. There is a family issue with one of my siblings, my dad's heart health, my upcoming clinical trial visit at Sloan ... and ding, ding, ding - I know that all of a sudden feeling so upset about everything does have a lot to do with a weird kind of "scanziety".
You see, with my clinical trial, I go every 3 months to get blood work, physical exam (as in my remaining boob and my chest get manhandled big time by the doctor or nurse) and to collect my next 3 months of pills and drug diaries. For some reason, because I have plans for the week (a surprise vacation for me and the fam), I am hard core dreading this follow up despite never even acknowledging them emotionally before. For example, I have been through these clinical trial appointments already 5 times - this is my 6th go round and I never before batted an eye about them. But this one, this one is freaking me out.
As far as I know, there have been no changes - no lumps or bumps aside from what has always been on my scar. I have not had any issues (thank God) with the trial pills - I am done with cycle 8 and aside from my blood showing low WBC, I have been "ok" - I mean I walk 6+ miles per day, I run around after and with my kids and just balance a lot of stuff oh and I survived Spring Break with the kids home and with no hard plans because of, you know, budget issues.
So why am I dreading Monday's appointment? Because in this reptilian piece of my brain is the fear, that little voice that says, "Sure all of your other appointments have been great and you never worried but now this one might NOT be and then you have plans to go away..."
I hate that stupid voice. I know that stupid voice - it is mine. I am telling me to shut up now immediately. That does not mean I will not indulge in a little crying - which is strange that I even feel the "interest" to cry as I do not cry - I cried once after diagnosis and once during chemo. I am just not a crier - there is nothing wrong with crying but I do not often feel the need to do it.
I mean put Beaches on and I will weep hysterically like a baby child. Or, you know, put on Coco and I will be a puddle on the floor. I mean, I have a heart. I just am not the type of person who feels they need to cry unless something is shamelessly playing with my emotions like killing Barbara Hershey or showing a young child how his family dies and needs to be remembered and shit.
So this is what I do in the time between - work out my feelings on this blog and try to force myself to not panic. Should be fun! I will update of course after Monday but not too much as I plan to still be on vacation NO MATTER WHAT!
So yesterday was The Big Squeeze time-for-the-big-squeeze.html and those of you who follow me on insta or twitter (what are you waiting for if you don't @thetimebetweenis and @timebetweenis, respectively) know I was given the "Negative Mammogram" (or cancer free news) for my left breast! YEAH!
I did not realize HOW freaked out I was about this damn test until the day before (as I posted about in the blog post about it on 12/20 to try to manage the emotions). However, in retrospect, I do realize I had been freaked out about this appointment for at least 2 weeks, if not more. The stress came out in other ways as I was in total denial about it. I mean, this is the new me, I practice gratitude, nothing bothers me, I am tough as shit and all that malarkey. OMG this cannot be. I cannot hide how I feel from myself so in thinking about how I shared about the other feelings of PTSD I experienced with the other testing I decided to do this quarter (because I am stupid - seriously, read this -> all-about-the-ptsd-post-breast-cancer.html) I am going to lay out my plan for how to manage these appointments in the future to help me overcome my insanity.
Some of the things I noticed before the big appointment...
Before the big day on 12/21, I had been obsessively "hiding" in my phone and Kindle to the point that my eyes were hurting. I find that after traumatic events or other weird things that have happened to me in the past, I become focused on always "distracting" myself and it is never a good thing. I love to read but to be reading until my eyes hurt is not a normal thing. In fact, it was hard for me to read books honestly and that is my favorite thing ever so I was just constantly starting and restarting books and not really reading.
Also, my sleep pattern was disrupted and although in all honesty I do find it harder to fall asleep post cancer treatment (this whole life after treatment thing deserves it's own post - note to self), I can normally sleep at some point. The past two weeks, I had trouble falling to sleep and also felt at a bunch of points that my eyes were just closed but I was awake. I also was apparently snappy and irritable with my husband and my dad. I mean, I often yell at my husband - I love him but we are exact opposites - but apparently, I was really in mega-bitch mode.
There were other subtle things like I found myself uninterested in eating and in preparing food. My appetite was gone and I guess I was just listless and not myself.
What I plan to do about it or why I plan to do anything at all...
Now, I know writing this and following it are going to be two entirely different things and I also know that no matter what, I will experience scanziety and/or fear during testing, and or other weird stuff that my body may decide to do that makes me worry like coughing too long and/or hip pain and/or anything that makes me go "Hmmmmmmmm....is that cancer?" SO as my big fuck you to cancer and the fact that I am at heart a nerd / project management professional (I have a certificate and everything, seriously, from the Project Management Institute and I am putting this bad boy to work right now), here is my "plan" on dealing with the SCANZIETY that happens before a medical appointment.
My Plan to follow whenever I have a big appointment related to CANCER:
1- TALK about my feelings - not just write them in the blog and expect everyone in my life to KNOW what I feel because they must read my blog.
I got this feeling standing in line at Five Below the other day that no one on line behind me would "know" I was a cancer patient - I no longer am bald and wearing a wig that might not "pass" as real hair, I no longer walk around with the pallor and fear of diagnosis permeating off my skin BUT the truth remains that I am still different and just like people do not know it by looking at me, my friends and family will not know how I am feeling if I do not communicate. *I found myself also pulling back from communicating with friends and stalk texting them because I did not want to mention my big appointment. When I was sharing stuff online too I was already pushed past my comfort zone because I was like DAMN what happens if I get bad news?
2- Practice self care A LOT before these appointments.
I had stopped doing the things that help me deal with big things -or that help the new me because the old me would have been MUCH MUCH worse than I was prior to this big test - I mean that instead of being oblivious to my inner turmoil as I was, I would have been all over it day and night obsessing over it meanwhile for this experience I was clueless how bad I was until the night before the big test. Self care includes exercise, meditation, girls nights, Yoga, buying new bathing suits (seriously, send help I am obsessed and have brought FOUR bathing suits and guys, it is winter and I am not going on a trip...) - you get the idea.
3-Remember that if I can survive getting diagnosed, losing my breast like bye felicia without any issue, undergoing 8 rounds of chemo, going bald, losing all of my hair, getting "laid off" the day after my last chemotherapy, 34 rounds of radiation AND then deciding to SHARE all of that publicly without flinching and maybe helping others in the process means that I am TRULY TOUGH and that I can handle whatever comes next. I cannot let fear guide me and make these events ruin the time I have in my life, no matter what.
I was hit with a bug, we all were actually snotmonsters, and I kept pushing myself to do more. I could not sit out on things knowing that last year at this time, everything was so hard for my family. Well, I made it harder by not listening to my body and taking a damn seat and skipping MORE stuff. When I look at my camera roll I am shocked at how much I did this month despite not feeling well AT ALL.
5-Trust God or something bigger than YOU.
I know a lot of people do not have religious faith but for me, this is most important, though I am putting it last. I know bad things happen to people all of the time but if I can just believe a little bit more that there is a plan for everything and though I do believe life is like a Choose Your Own Adventure book because we do make our own choices that if I trust in something bigger than me, in my faith, in my religious experiences and my decision to pray, hope and don't worry then maybe, just maybe I will not get so goshdarn "sick" over appointments and such.
What are your go to plans / ideas on how to manage scanziety and all that comes with being a cancer patient?
What I posted on Instagram about December 2017 vs 2016; follow me @thetimebetweenis or on Twitter @timebetweenis
I have always loved December. It is my birth month, after all, and the holidays and even getting only one gift as a kid instead of two since birthday was so close to Christmas was not enough to ruin it. I also met my husband in December and sometimes that is something I celebrate and sometimes.... welll.....just kidding - at the end of the day, as I wrote here on this blog, he is a good man and I am lucky to have met him in-sickness-and-in-health.html.
Now, of course, after my breast cancer plot twist, I have even more reason to be in love with December. My birthday is December 13th and on that day last year, my big 4-0 birthday, I was getting a pet scan, which I found out the next day was all clear (best birthday gift ever) and then three days later, I had my surgery.
After the operation, when I was snoozing off the anesthesia, my surgeon called my husband and told him, "All of the cancer is gone; I removed all of it." I guess now December 16th is the day of my re-birth. I will NEVER thank cancer but without it, I would not have become this improved version of me that I am today.
In the past, I worried about everything. I was not truly happy in my life no matter what. I would focus on the negatives and be so stressed and tired and not give a shit about taking care of me. I was the LAST person on the list for anything in my mind. I judged other people for taking care of themselves and for that, my silent judging, I am sorry. I held myself up to a standard that did not exist as I wrote about in my Open Letter to me an-open-letter-to-me.html.
I wrote about my PTSD and all of the medical tests I subjected myself to recently all-about-the-ptsd-post-breast-cancer.html and wanted to update that on December 1, I got my final report back for the endoscopy and everything that was biopsied was benign! I spent time worrying over those 3 weeks of waiting but nothing near to what I would have done before I walked the walk of a breast cancer patient. I did not let it take my joy, I did not let it take my sleep and I did not let it take my peace.
This month, I go and see my surgeon on the anniversary date of when my husband and I met. We went 16 years ago now on a Thursday night in December that feels like a lifetime ago. He was still on the job and working 12-24 hour shifts down at "ground zero" as we met the December after 9/11. We made it work, somehow, and next year is our 13th year of marriage. So on 12/21 when we are at Sloan for my mammogram, ultrasound of the remaining breast and my follow up with the surgeon on the mastectomy site I want to also celebrate us somehow...
Instead of worrying about these upcoming tests and visits, I am instead going to focus on the joy- the joy of being "cancer free" at least as far as I know :) and I want to keep it that way. Last year at this time, I was not cancer free and it really put everything in perspective.
I am still here, I am standing and this is what I do in the time between. I also decided as an early birthday gift to myself of upgrading my Weebly website to streamline the URL to just www.thetimebetweenis.org and also to add in the Search bar (really for me so I can find stuff easily...
Happy December to all of you - I wish you peace and happiness always and great health!
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