On 6/23/10, at the age of 26, I was diagnosed with invasive ductal carcinoma...Stage 3 Breast Cancer. On 7/25/14, at the age of 30, I met Lolli, a 1 inch tumor in the left side of my brain; I have metastatic disease. On 2/3/17 Lolli became active again and as a result of treatment I have limited mobility in my right leg. I want to share my experiences so that loved ones, friends and others can follow along while my journey continues. Enjoy.
Tuesday, August 24, 2010
a week since 1st chemo
Well it has been a week since my first round of chemo. Today I had to cancel an acupuncture appointment because I had a rough night last night, unable to sleep and up with a lot of stomach pain, diarrhea and nausea--the only place I wanted to be was in the fetal position.
I did go in to get my counts checked, they were low--but that is what we expected, they weren't too low (which is good--"mini celebration"). I was dehydrated so I stayed in the infusion room for an hour or so getting fluids and some nausea meds in my port. I have to go back tomorrow to get everything checked again and meet with the oncologist. I am looking forward to the follow-up because this heartburn radiating into my ears that feels like hot lava then pouring out of my ear drums just isn't working so well for me right now. Either is my bloaty stomach that is so sore it feels better to push it out than suck it in...
But I am no worse for the ware of this round of chemo. I am in my nadir period so we are even more aware of infections, I think we are taking my temperature every 2 hours (including night time) and watching the rash I have to see if it spreads. My tongue is so raw that air hurts it....I have found that coating it with chocolate pudding is pretty soothing :)
While getting fluids today I was able to go to the "other" infusion room. The way it is set up at my hospital is there is the chemo area that my oncologist runs, then there is an outpatient chemo area where my oncologists writes my prescription and it is dispersed there. Why there are these two rooms I don't know, but I know that I go to the outpatient one because it is cheaper with the insurance I have.
Today, though, while getting fluids I went to the "other" room. Not too impressed and for one small, tiny, little, minuscule, moment in time I said thanks for insurance bullshit. This room was so wide open, no curtains, it felt cold and isolating and elderly women and one man were all facing in (like a circle really) covered in hospital blankets and hooked up to IVs with chemo and fluid. The nurses were pleasant but what a heartbreaking room to walk into. Scott and I both looked at each other, and later talked about how "lucky" we are that I am getting chemo at the outpatient facility.
While waiting to receive my fluids an elderly woman sat in the chair beside me, I am an eavesdropper and overheard that she was nervous about getting a port put in, and that she was beginning her chemo today. She was accompanied by someone, presumably her daughter, so I thought I would chime in. I got up from my chair walked over and offered them both to feel my port, told her a bit about the surgery (not that I was awake and in pain the entire time, but the just of it) and that she will be happy because it will save her veins. Then I just hopped back over (wow I sound pretty limber here...really I have slowly walked and teetered) and sat down in my chair.
And it hit me...........no one has told that woman anything! Why should she have to start chemo today, without a port?! Then have a port inserted Friday? She was bruised arm to arm and very frail--what an injustice, who is her advocate? Who answers her questions, or who even gives her the floorspace to question?
I will be the first to state that I am over-opinionated on many things, I am not afraid to tell you those opinions, argue a bit, but still remain internally smug that I am probably right. I also stand up for myself, sometimes in a put my-foot-in my-mouth type of way, because it was not needed, but I do so just the same. I also am like a momma bear when it comes to my friends and family---got to get through me before you ever get to them.............so seeing women, alone today caught me off guard, it just didn't seem right.
I was (is, am, are) terrified to find out I have cancer. I was terrified of surgery, questions, tests, options, support, diagnosis, staging, life span, fertility--but I started the journey on pretty solid ground. Walking into that room today seeing people with no one their with them during their chemo, all blankly staring in the center or holding a worn book--slapped me with the feeling of what alone would really be like...and for many, this is a reality. The contrast of experience with cancer is frightening. Cancer doula, cancer doula, cancer doula!
Today I became thankful for my place of chemotherapy and the care that I am receiving. My heart broke for the women who don't have the army fighting with them like I do, and I made it all day without a long nap.
So today I felt alive again (not like "me", but the closest I have come so far) had raw emotions, ate actual food, rode in a car, felt incredibly miserable and had a "nadir" date with my husband....
My new goal is to see how long my leg hair will grow before it all falls out....I would take bets but we are working against the clock so it wouldn't be fair.
hoping a good night leads me to a good morning.
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Wow, yet another awe-inspiriing post. Keep fighting! You're wonderful. And just so you know... I have a month off of school, and I'm not working, so if at any point you need anything, even if it's just a delivery of chocolate pudding, I'm your girl.
ReplyDeleteYou are fabulous! I am sure that you were a source of some comfort to that woman. She was lucky you were there. <3
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ReplyDeleteIt breaks my heart when I hear about your healthcare system and the unfortunate ones with little or no insurance. Living in Denmark we are so blessed that we don't have to worry about economics in times of severe diseases or accidents, we paid for it all through our taxes. Everyone, I mean everyone, young, old, rich, poor, unemployed, can get the same treatment and if you are not satisfied with your treatment you can ask for another doctor or hospital -for free...
ReplyDeleteI hope that someday US citizens will have the same opportunities.
The "leg hair" statement made me laugh! I love that you can see the lighter side of things! :)
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