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?
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...
Breast cancer comes with its own world of procedures and protocol and when you first start on the journey to getting cured (fingers and toes crossed) you do not know the map of what happens, when and how.
I found even asking other survivors was not clear and I think a lot of that is because you just try to forget as much as you can as fast as you can. I mean, there are some days that I forget I even have/had breast cancer (I prefer to say "had" but the timeline to being cured is 2-3 years post initial diagnosis, barring any findings). So, I will say "had" but really I still am in treatment and even post treatment, I am still in this in between world of cancer-free and cancer-NOT-free.
At the end of May, I had my oncology follow up after finishing chemo and I was worried about what it would entail. This month, I had my follow up with my surgeon and I was remarkably less nervous. I was calm going in for this follow up even though I had no idea what would happen.
For the oncology follow up post-chemo, you do blood work and it is a lot of blood not like the usual finger squeeze this is the full vein set up and they check you for everything. The blood work though was done at the end of the appointment and you are called about the results. The actual follow up is similar to your during chemo appointments - you are asked about symptoms and checked to make sure your breast(s) and/or chest area are clear with physical exam. Also if you are on medication of any kind to cease your hormones (if you are estrogen/progesterone positive you will be put into medically induced menopause as the hormones drove your cancer).
As I am on the "young" side (ha) and my cancer was hormone driven, I get 3-month oncologist meetings to administer medication via needle to stop my ovaries from producing eggs. I also take the daily pill to suppress my hormones, too. Even though without this medically induced menopause, most women find their fertility demolished by cancer treatments in general. I am thankful my family planning was done but I still need to be very careful and maintain the menopause as my body would not be able to handle a pregnancy.
For the first surgeon follow up, you are just physically checked out and set up for your next appointment in 6 more months. At the one year post surgery visit, you have mammography, ultrasound and/or physical exam of the chest area to make sure you are still clear.
I realized today that it has been 6+ months since my surgery. Time definitely does fly and like I said you just want to get to that point where it is all in your review mirror and a distant memory. You cannot rehash it everyday and/or think about it obsessively. It is what it is. You might never know why you got cancer, but you got it. At least now you know what happens at those 6 month visits.
I am assuming my visits with the oncologist will continue to just be blood work and exam but I will update once I get to the next visit.
The Time Between Is, INC is a 501(c)(3) corporation - help us reach our goals of launching #careeraftercancer
Search the blog here: