This is a tough week for me. I have not been sleeping well and everyone in my family is a "snotmonster" and all congested and coughing (including me).
Of course, this was making me think I should be concerned for me and my health given the whole cancer thing but then I realized that if everyone in my house is doing it, it should be ok, "should be" the operative term.
When I was feeling sorry for myself this morning, something crossed my Facebook feed that made me stop and smack myself. It is the story of a 5 year old girl diagnosed with DiPG the worst kind of brain cancer and given 9-12 months to live. That shook me right up and I am including the link to the YouCaring site so if you can, you will donate something to this family. I do not know them AND I am unemployed but I donated $10. I would have done more, if I could. I know I cannot donate or help every family who is hit with cancer for a child but I will say again that cancer sucks but it is so much worse for a child - give what you can here and if you cannot give, please share the link-> www.youcaring.com/parentsofaveryandyandemilyneill-1047204?fb_action_ids=10214612959054343&fb_action_types=youcaringcom%3Adonate.
Tomorrow I go to Sloan for my yearly mammogram and sonogram on my remaining breast (good old lefty). It is something that has been bothering me subconsciously and I think that is why I have been unable to sleep too well this week like at all. I have been tired and groggy and snotty (not the teenage variety but literal snot) since Monday (and even for some of the weekend, too).
My remaining boob has been prodded and checked at each and every follow up over the last year (with my clinical trial I was seeing my oncologist monthly for a bit and each visit I got manhandled lol going-to-sloan-monthlyor-not-more-about-the-pallas-clinical-trial.html) AND I check it every month on the "feel it on the first" campaign and it all feels ok. Tomorrow, though, is my first mammogram and ultrasound since the big Diagnosis and after that whole cancer plot twist last year, I guess it is normal to be freaked out.
And I think I am kind of freaking out. I mean, I didn't freak out a month ago or even a week ago but I am kind of freaked out now.
I am working hard on putting it all in perspective and seeing that family's story about the young girl being diagnosed definitely is making me put it in perspective and just take a deep breathe, meditate, pray and just deal with whatever it is. I know that my worries today, my freak out right now, is not going to help or even preclude any bad news from potentially happening nor will it make me feel better if/when I get good news, either - it is just a waste of energy to worry right now. I know I need to stay focused and smile but damn today, the day before I go in to sit in that waiting room in that robe waiting to be called and squeezed and prodded, I am freaking out.
I hope that I get it out of my system today but between everyone's cold, coughing and congestion (it is like leaky faucets over here, no joke) I just know I need to rest and not think about it. I should instead by thinking, well, it could always be worse so let me just enjoy today, right now, no matter what happens tomorrow, I have this time between and yes, we are all feeling yucky and I am exhausted and not at all ready for tomorrow but I will get it over and done and survive it because that is all I know how to do. It is how I got through chemotherapy just that focus to just get it done knowing it was something I had to do in order to get to "cured" or "healthy".
Did you freak out at your first follow up mammogram and sonogram after breast cancer? How did you deal with it? I know now for next year that I need to take better care of me before these testing dates come up because I do think if I did not feel so yucky and had been able to sleep better, I would not be as freaked out as I am ... (it is like a game of what came first, the chicken or the egg though because I probably did not sleep well because of the worry for the upcoming test...)
What do you think?
So as a December girl, my birthday has always been a great way to celebrate the holidays in overdrive. I used to (before kids) decorate my house and tree right after my birthday (or the day of it) - now of course, we decorate after thanksgiving.
I was diagnosed with breast cancer shortly before my birthday last year - actually almost 2 weeks before my birthday to the day. This year, on my actual birthday, I have to admit, I had tons of mixed emotions. I was of course happy and thinking myself blessed and lucky and all that jazz but I also experienced a lot of fear. A lot of dark thoughts about what could happen and if the worse would happen and I would die before seeing my kids grow up or not have the chance to do my renaissance my new me my unveiling of whatever it is my goals in my new life will be to give back, to do more and all that jazz.
I know I have some PTSD and some other lovely issues to work through but I know it takes time. I do all I can to stay focused and positive but sometimes, of course, I falter - hey, I am only human.
Today is the day I can truly celebrate, though, and stay focused on the prize, which is this moment, today, this exact moment of knowing that one year ago today, I had my surgery. My surgeon took out everything - my mastectomy is quite radical I mean hey my tumor was almost 6cm after all. Also, I lost 25 lymph nodes a year ago today of which 5 were positive for cancer.
When the surgeon spoke to my husband he told him emphatically, "I removed all of the cancer. It is all gone." I posted about that on Instagram today (@thetimebetweenis); from that point on my husband has been convinced that I am cured, that I am cancer free. I live my life to try to believe the same, every moment of every day because if I did not, I would not have any peace. I know that this might not be true as it is not true for 1/3 of breast cancer patients who wind up having cancer spread to other parts of their body and become "terminal" at some point...
I also know that some people have local recurrences and all that jazz. I try instead to be positive and not think about those possibilities, but sometimes like the night of my birthday, those thoughts were taking over and winning which sucked.
I did have an awesome night and was able to not cry - because at one point, at dinner, surrounded by my loved ones, I did want to cry. I think the tears were a mix of self pity and fear and I do not like those feelings not one bit. I am thinking about making a post about how pity is one of the worst emotions and why I think so but for now, I will just say that it was a moment of weakness - which everyone can experience at any time though in the old days, I felt this weak all of the time -- now ,though, I truly do (try to) live in the moment.
I am going to share something now that might make you think I am insane - and if that is the case, it is ok, sometimes, I think I am insane, too (lol).
On the night of my birthday, when my peace was rocked, as I was sleeping one of my children called out to me and said, "Mommy, I am scared!" (This happens sometimes as they were impacted by my cancer plot twist and it is the reason why I worked on the children's book told from "their" perspective - see it here - working-through-the-pain-or-what-your-kids-feel-when-mama-gets-sick.html.
Anyway, when they called out, I wanted to say, "I am scared, too." but I did not of course - I told them, "Everything is ok, there is nothing to be scared of..." then, I quickly fell back to sleep but I was not asleep. Instead, I was bathed in a white light that was so strong and so bright and yet I could look at it without having to shield my eyes. I was in a white bright room and in that room were 2 other people - Mary, the Blessed Virgin and Padre Pio. I have written before about my experiences with Padre Pio here padre-pio-me.html.
This experience was more deep, more profound and even if I created it in my head alone (which I do not believe) it was still something that brought me great peace and made me feel that no matter how much I worry, it does not help and that I should just follow my original gut instincts to "pray, hope and don't worry". There was more that happened during this "vision" or "dream" but I cannot put words to it...
I woke up suddenly because I felt something in my hands. When I opened my eyes, I was holding my green scapular in my hands, tight. I will write more about what a "scapular" is at another time because this post already is turning into a book and I have some living to do today! On this day, the day of my "rebirth" there is no bad feeling or fear - there is just this moment, this moment when last year, we heard the magic words, "All of the cancer is gone." I am going to hold on to that and keep it with me so that I can continue to have my peace, no matter what.
What do you do in the time between to help you cope with the fears, the bad stuff, the PTSD? I would love to know! Thanks!
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!
This month is my cancerversary --> its-my-cancerversary.html and for some strange mental reason, I decided to do a bunch of medical shit this month and I am really regretting it and recognizing how I had no idea how deep my PTSD goes after living through a real medical diagnosis and hoping and praying to stay healthy.
So just this month, I did the following:
I am doing the best I can to not think doom and gloom. I know deep down that my thoughts cannot change the results so why should I beat myself up and ruin my holiday season on the unknown. Until it is known, I can keep focusing on being "cured" or NED of being me of being free.
I shared my PTSD on instagram and so many people commiserated and knew what I was talking about (consider following me there @thetimebetweeenis or on twitter @timebetweenis - I am sharing it here with more detail to hopefully help someone else as they learn to navigate this new world in the time between...
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