So Wednesday was round one of chemotherapy, and by Friday I started to feel pretty tired and weak. By Saturday I was pretty much completely without an ounce of energy. I also started to feel faint if I stood for more than a few minutes, but when the on-call doc told me to go to the ER, where they would likely just give me fluids, I made an executive decision to stay home and pound fluids on my own. Sunday I woke up feeling better, albeit sill very tired and weak. There are so many side effects, I have a list of stuff to expect, a list of stuff that is worrisome and warrants a call to the doctor, and stuff to expect but can be worrisome if they continue or are bothersome, and so I should call the doctor. On Thursday morning I took my Claritin and Aleve prior to my Neulasta shot, and continued a couple of days after. Knock on wood, I did not have any bone pain, other than a few minor and sporadic twinges here and there.
Last night I made burritos for my family with ground turkey, pinto beans, onions and a variety of peppers. According to my family they were very delicious. I even ate one, and I think it tasted good going down, but it was not long after that there was a suspicious metal-y after taste lingering in my mouth. This morning Dear Husband made coffee with flavored cream and sugar which was heavenly, until said metal-y after taste descended upon my taste buds. WTF?! My coffee is ruined? My heavenly nirvana first thing every morning coffee is ruined? Sigh. My mouth also feels as though I’ve been gargling with acid, and like patches of my tongue have been burned off. Another annoying side effect that may be TMI (but beware I’m keeping it real here) is constipation. Annoying but not painful….at least not yet… All in all, and considering I was expecting to feel like shit, or death, or begging for death, round one of chemo was tolerable. I am not about to get cocky though. I know that this thing gets harder each round, and I thank God for each day I am able to get through.
I was delighted that two of my chemo scarves were delivered over the weekend. There must be something in women’s genetic make-up with regard to shopping if I can get excited about chemo scarves. Since I’m going to wear them when I’m bald, and I’m excited to wear them that must mean I’m excited to be bald. Wait, what? Maybe it’s just be the thought of having any shiny new thing, regardless of the circumstances, that can stimulate seratonin levels. If there is any new situation in my life I will find a reason I need to shop for it.
So yesterday was the first round of chemo. Was I nervous? Hell yes. It’s nerve wracking to not have any idea of what to expect. Especially since I have restrained myself from googling things which has been very hard but I know it is better to limit googling because anyone can put anything literally on the internet. It went fine actually. I was in my own little room and since I was there over lunch they fed me too. There were snacks and beverages, although my nurse didn’t know what to do with my margharita order. Being on the wagon really sucks by the way. I had a TV so I could watch all the obnoxious day time shows but really I just napped mostly because silly me took my second steroid dose right before bed and I was up the whole night before. I am feeling okay today, so far, but I know that any side effects will likely show up in the next couple of days. Today I am getting my Nulasta injection and thank God for my chemo advisor (coworker going through chemo for BC too) at work who gave me very valuable information to combat the effects of that. However, I’m also wondering why nobody at my doctor’s office imparted these nuggets which will supposedly keep me from being in AGONIZING BONE PAIN. So, stay tuned. I am now officially in countdown to baldness….I need to get an app that will let me see what I look like bald. I hope my head is not shaped weird.
So 40 minutes in a tube wasn’t so bad, even though I’m slightly claustrophobic. I’ve had them before, nothing new about this one. Except Tomas and I have been binge watching Hannibal (awesome show btw) and a few days ago there was an episode where a woman was in a CT or some such scan contraption and there was a static electricity incident where she burned alive in the tube. So, of course I’m trying to force my thoughts toward kittens and rainbows during my time in the tube. Anyway, my doctor already had the results by tonight and said its not cancer in the bone. Good news! And he is certain because apparently they were able to compare it to a scan I had there in 2004. Hmmm, 2004, what could that have been about? Oh wait, now I remember. That was when I was hospitalized for several weeks at St. Joe’s for bacterial meningitis, nearly died, and lost sight in my left eye. After that happened to me, Tomas and my friends would joke “well that must certainly be your brush with death, or brush with catastrophic illnesses.” Not so much. If what doesn’t kill me makes me stronger I should have freakish Hulk like strength by now you guys.
So yesterday my port was installed, inserted, implanted, or whatever the proper medical term is. This is the device that will facilitate delivery of my chemo drugs that I hope will not make me sick, or at least not too sick. I was supposed to go at 10:30 but my surgeon was behind. I wasn’t allowed anything by mouth so by 11:45 I was sure I would die of dehydration (I did suck on a few ice cubes on the down low.) I had to squelch my irritation though because what if it were me that needed extra time, I would not want my doctor zipping through my procedure to get back on track. Someone in the pre-op room next to me had like 15 people crammed in their little 8 x 10 room (you know the tiny rooms separated by a shower curtain), for like 2 hours, talking about the weirdest stuff (before anyone gets judgy, I tried not to listen but they were LOUD.) Am I the only one who doesn’t want to be surrounded by a large crowd cheering me on right before surgery? All I wanted was to rest and read my book in peace. Tomas came with me but it was better that I be left alone because really we would just end up trying to think of non-surgery, non-cancer related things to discuss, and end up gossiping about the freakshow happening next door. Everything went as planned, although my throat still hurts from the tube stuck in there during the surgery. And my neck and chest are sore too because there is a little plastic thing with a tube under my skin. It sticks out. Tomas touched it and immediately snatched his hand away saying “ew!” Like it’s a parasitic twin or something.
Some of the best advice I received from someone I know going through this: ” You will have your moments of weakness, but then you will have moments of incredible strength. Find the positives and focus on them. Keep looking ahead.” I am going to play that in my head on a never ending loop.
Well the PET scan results are in. The first thing the doctor said was it looked good. Phew. BUT, of course there’s a but. 5 mm spot if density in one rib which he thinks could be arthritis – he says he’ll order an MRI for that spot. If it’s cancer cells, the radiation doctor will add focus to that area as well. So, pretty good news for once. I had moments where I envisioned he would tell me its in my brain, lungs, liver, or any combination thereof and I should get my affairs in order. Do they still say stuff like that? Like you see in the movies? “Mrs. Nemecek at this time I advise you to get your affairs in order.” He assured me though he didn’t see anything in any organs. He even said he wanted to read everything thoroughly before calling me which was why he didn’t call sooner. I had to bite my tongue so I wouldn’t ask him to please read the report again to be absolutely sure. I need to figure out a way to stop looking for the negative. After my PET scan the technician asked if I already had an appointment with the doc to go over results. “Why do I need an appointment? I’m sure he’ll just call me.” Unless maybe she saw some bad stuff during the scan and knows he’s going to want to break the news face to face….to tell me to get my affairs in order, OR maybe she just says that to everyone and I’m looking for trouble. Time to stop looking for trouble.
Drains are out, but the left side is still leaking. Apparently the fix for this is taping a maxi pad over it. Except when you’re out of medical paper tape you shouldn’t use duck tape because when you peel it off, layers of skin come off too. Fu#$! Ow. Or like Steve Carrell said KELLY CLARKSON!
Boobs you have served me well, fed my baby, looked pretty good in clothes, been small, medium and even large(ish) during my lifetime. But now you’re trying to kill me so you’re outta here. People want to understand what it’s like to face a bilateral mastectomy. The only way I could view it was that my breasts, the left one specifically, were ticking time bombs and I couldn’t wait to be rid of them. I think I also had a fear of the unknown. I’d googled photos. But I had other fears. Worse fears. Like where the sinister cells may have traveled. Waking up from the surgery I felt relief, it was done. For now. But really it was just beginning. After I was convinced that a truck truly had not run over me, the morphine kicked in but I was really only comfortable if I didn’t move. My awesome kick-ass nurse wrote my pain management goals on the white board.Tomas and Lili came to see me and I was glad to have company although I was still pretty drugged. Random thoughts popped in and out of my head. Like where were my boobs right now? In a specimen jar somewhere? I must have mumbled it out loud because Tomas, obviously trying to keep the mood light wrote this on my white board under “Your Questions:” When the nurse saw that she laughed but handed my these pillow things which I supposed were to go into my shirt. I had two drains in my chest and the hospital gave me a “camisole” thingy that was supposed to hold them. The camisole was snug fitting and white. Clearly whoever designed this has no realistic picture of what’s going on here. There are drains that are draining bloody fluid and y’all want to give me a tight white tank top. Seriously. When I got home, Tomas gave me a small tool apron with two pouches I could hang around my neck and hold the drains. He has mad MacGyver skills. Going home the next day felt great. I’m in pain but if I mostly stay still it’s ok. I actually expected worse. I’m not sure what I expected exactly but I can move around okay. The drains come out in two weeks, staples come out in three weeks. Yay something to look forward to.
So one day in April, the day my husband was leaving for Nepal for a two week mountain unicycle event (yes that’s a thing), I felt like my left breast felt different, like that firm area behind the nipple was larger than the right. And the nipple seemed more flat. I thought “huh,” that’s weird. One doctor appointment, ultrasound, mammogram and biopsy later, I’ve got invasive lobular carcinoma. Yes I get mammograms faithfully, but lobular masses are sneaky and hard to detect. And they don’t feel like a cyst, but a thickening of tissue. I am not a medical professional, and things I relate are specific to me and my personal experiences. I chose not to tell the husband until he got back from Nepal-what could he do halfway across the world? When I picked him up at the airport I broke down and he surmised that our 14 year old dog had died. When I told him no it’s cancer, mine, he seemed to react like I did when the radiologist was performing my ultrasound and said “it’s a mass.” That was the moment when I felt like there was my life before that statement, and everything after. I am going to chronicle my thoughts, feelings and experiences here, uncensored, kind of like journaling in the modern world.