6 Months Post Chemo.....FAQ Time
By chiagal on May 17, 2011
I had my 6 month post chemo check up on Thursday morning. All in all, it was a pretty uneventful appointment. Dr. Frenette did an examination and said everything looks good. I’m scheduled for my first post cancer mammogram in a month, and I won’t see Dr. Frenette again for another 6 months!
He did of course ask how I was adjusting to the tamoxifen. I had to come clean and tell him that I haven’t actually started taking the pills yet. He laughed because he thinks I may be making a slightly bigger deal of it then I need to. Shocker! He suggested I started licking or nibbling at a pill every day to ease my way into it….which made me laugh.
So I’ve talked about doing a chemo FAQ for a while now. For some reason, people are very intrigued by chemo and tend to have a lot of questions they want to ask, but don’t always feel right asking them. I’ve been very open about everything chemo related through this whole process and have encouraged people to ask any questions they may have. I’ve tried to capture the more frequent ones…but know there are many others. Feel free to send me an email (firstname.lastname@example.org) if there’s anything else you want to know about!
Does it hurt? Chemo itself doesn’t hurt. I am deathly afraid of needles, so the most painful part for me was the insertion of my iv. Unlike the hospital where they give you a little numbing shot before the iv, the infusion center goes right in with it. So the iv site is a little painful for a few minutes until your vein gets used to the foreign object. The chemicals themselves are essentially painless. It feels just like a normal saline drip. There was a little burning sensation at the iv site and I did develop some phlebitis (inflammation of a vein) and bruising during my first round of chemo…but that was suspected to be more a result of choosing a vein on the top of my hand where they are smaller in size. A larger vein in my forearm was used for the subsequent rounds of chemo and I didn’t have any further issues. The phlebitis left my vein in a hardened and swollen state for a good 2 months…but is 100% back to normal now.
What does the typical round of chemo entail? My typical round of chemo lasted about 6 hours….my appointment was scheduled for 10am and would usually end by 3:30 / 4pm. Things are very slow moving, and there is a lot of down time. Your “chemo cocktails” have to be mixed on site taking various factors (based on your blood draw) into account when mixing.
After arriving, they walk you back to the infusion center and you get to pick which chair you want. I always picked a chair in the corner so I only had the potential for one person to sit next to me. As big of a social butterfly as I can be, I never really anticipated feeling like small talk with strangers while enjoying my “chemo cocktails”. After making a seat selection and getting situated (which usually took about 20 minutes in my case after collecting the necessary snacks / beverages and organizing all of the paraphernalia I brought along with me), a heating pad is placed on your hand / arm to prep your veins for the iv. I chose not to use a port during chemo because (1) I only had to have 4 rounds of chemo, (2) the idea of having a port sticking out of my chest area for 3 months completely freaked me out, and (3) I didn’t want another scar to act as a constant reminder of my days in chemo…the months/years it will take to grow my hair back is reminder enough!!
The heat from the heating pad makes your veins “pop” and allows for easier insertion of the iv. After the iv is ready, they draw your blood and start a saline drip / flush your vein. They then would inject various steroid and anti-nausea medications….and in my case, extremely high doses of Benadryl and anti-allergy medicines (see scariest part of chemo FAQ below). Approximately 1 – 2 minutes after the Benadryl injection, I was out like a light. I’d literally sleep through the next 3 – 4 hours of activities and only wake up after being shaken and told it’s time to go home.
During my 3 – 4 hours of slumber, the nurses would continue the iv drip until my first of two “chemo cocktails” (cytoxan and taxotere) was mixed and ready to be consumed. Each bag took around 45 minute – 1 hour to empty. In between and after each drug, they flush your vein really well to wash out any residual drugs from the iv site. Once the second drug is completed and you’re fully flushed, they remove the iv and send you on your way home.
What is the infusion center like? The infusion center is a large open room with a glass cage of sorts in the middle to serve as the nurses’ station. This location gave them full viewing access to all of us unlucky suckers with the iv’s in our arms. Reclining chairs spaced about 3 feet apart lined all the walls of the room. Each “space” came with an iv stand, a companion chair, a privacy curtain which I unfortunately had the embarrassment of using (again, see scariest part of chemo FAQ below), and a small tv. Other amenities included: 2 bathrooms, a snack/beverage collection free of charge (I think the “chemo cocktails” were costing us all enough), a decent collection of periodicals to peruse, and an unlimited supply of warm blankets.
The room itself had a very sterile feel to it….not sure what I was really expecting…but it definitely looked and smelled like a hospital. It was generally very quiet and you don’t see much socializing take place. Again, not a huge surprise….”what are you in for?” just didn’t feel like an appropriate question to ask in my personal opinion. Everyone pretty much kept to themselves because, to be completely honest, we were all probably pissed off and angry we had to be there in the first place!
Do you lose your hair and how soon? Yes, hence the creation of this blog! You most definitely lose your hair….and ALL of it. Head hair, leg hair, body hair, eyelashes, eyebrows….you name it, you lose it. They have made many advancements in cancer treatments, but unfortunately hair retention is not one of them
Like clockwork, two weeks out from your first round of chemo it all starts to go downhill. I had my first round of chemo on Wednesday, September 8th. I chopped my hair off Friday, September 10th….and got to enjoy my new “do” for about 12 days. Once I was officially “on the clock”, I continuously pulled at my hair to test its staying power. People were constantly telling me to stop pulling it, but until you are in the situation of knowing it’s only a matter of days before you start going bald, you’ll never understand my reasoning. The thought of being surprised by a clump of my hair falling out unexpectedly was so scary and heartbreaking to me….I did the only logical thing I could think of….continuously pull at my hair until the first clump came out and I knew it was actually happening. I’ve always been a “picker”. If I got sunburned and my skin starts to peel, I end up peeling off the top layer of my skin. If I have a hang nail, I pick at it until it’s gone and my finger is bleeding. If I have a scab, I can’t stop picking at it until I’ve pulled the scab off. In a very strange and dimented way, it’s fun. So it should be no surprise that I picked and pulled at my hair until I knew it was starting to fall out. I literally sat on the toilet and pulled out all of my “other” hair. Why would I do that? Good question. I guess because I could. It was the strangest thing. I could pull out my hair like I was picking a fuzz off of my skin. I’ve been getting bikini waxes for years and know the “discomfort” that comes with those….so being able to just pull my hair out with no effort and zero pain was kind of neat. Again, I am very strange and dimented!
I’ve digressed. The first clump came out on Thursday, September 23rd. By Friday morning, I was losing hair uncontrollably. I remember sitting at my desk at work with tears streaming down my face because it was falling out so quickly and there was nothing I could do to stop it. A scratch of my head resulted in a clump of hair in my hand…turning my head too quickly resulted in a mouth full of hair….brushing up against someone or something left hundreds of strands behind….it’s hard to truly describe what I looked like that day. I made the mistake of wearing a black turtleneck to work…so my blond hair practically glowed all over my entire body that day. I walked around with a lint brush trying to control the situation, but I couldn’t clean it away fast enough. Suffice it to say that that day will go down in history as one of my top 5 worst days ever. God forbid I ever have to go through that again….I will absolutely be shaving my head.
I talk a lot about how the hair on my head is growing back, but don’t talk much about the other hair. My leg / armpit hair grows much slower then it used to…which is fine by me! I can get away with shaving every 3 – 4 days right now..and it’s summer. I’m not sure why that is, or if it’s normal, but I’m not going to complain! And oddly enough, the hair in my armpit that was zapped during radiation grows more hair then the armpit that didn’t get zapped! Which is completely backwards from what Dr. Crimaldi told me…strange! My eyebrows are completely back…just a little bit thinner then before. And I’m still holding out hope that my eye lashes will go back to their pre-cancer shape and form. They are almost as long and full as they were before chemo, they just don’t curl naturally anymore. I have to use an eye lash curler now and it’s a major pain in the butt….I haven’t quite mastered the use of that beauty tool. If you want information about any “other” body hair….email me….I’m not sure everyone reading this blog wants to know that much information!!
Does chemo make you nauseous? It does and it doesn’t. I continuously felt nauseous but was lucky enough to never get to the point of getting physically sick. I lovingly coined my feelings during chemo as “gut rot”. You know that feeling you get after multiple days in a row of eating a bunch of crappy food where your stomach is constantly upset and there’s nothing you can really do to calm it….well that is how my stomach felt throughout chemo. I ate a lot of carbs throughout chemo because a lot of times a bagel or toast was the only thing that would get rid of the queasiness for a few hours.
What are the other side effects of chemo? Hair loss and nausea are the commonly known side effects of chemo, so I was often asked about what others were. There were several that stuck out in my mind:
Finger and toe nail damage. If you’ve been reading my previous blogs, this will be no surprise to you. Chemo drugs can sometimes cause your nails to peel back from their nails beds and in the end fall off. Which mine ultimately did. It wasn’t all that painful, just more of a pain the butt having to be extra careful as to not tear them off.
Chemo brain. This was one of the most frustrating things for me. Chemo brain is the “mental cloudiness” people tend to experience during and after chemo. Simply put, I was incredibly forgetful and distracted for a good 3 months. I would start a sentence and by the time I was getting to the punch line couldn’t remember what I wanted to say. I’d have trouble remembering simple things throughout the day. I could think of the meaning of a word I wanted to use, but couldn’t actually think of the word. It did make work a little interesting for that short time. I’m sure my co-workers thought I was a complete idiot. Fortunately I think everything I did for that entire period of time was basically written off because I was that girl who had cancer. Thankfully it wasn’t permanent and a few weeks after chemo I was back to normal.
Hot flashes. This may have been more a result of my depo lupron shots (to conserve my ovaries) then the chemo itself, but none-the-less were AWFUL! I never really believed in hot flashes before. I thought they were something whiny women made up in their heads. Boy was I wrong. Hot flashes are real and they suuuuuuuuuuuck! They would come on without warning a few times an hour and I’d be drenched. Or I would wake up in the middle of the night with sweat rolling off of my body. In one word…they are miserable! I pity any women who has to live with them.
Mouth sores. Chemo causes your white blood cell counts to drop to really low levels. About 5 – 6 days after a round of chemo I would start to get little cuts/sores in my mouth and on my tongue. I would brush my teeth and my gums would bleed. Pop and certain foods would be really painful to eat and drink because they would burn so badly in my mouth. It wasn’t long lived fortunately. The week following a round of chemo I would have to go in and get my blood drawn to check and make sure my levels were ok. My white blood cell counts were always very low…hence the mouth issues…so I would get a neupogen shot to stimulate the growth of more white blood cells. Within 48 hours, my mouth would be pretty much back to normal again.
Sex drive. Gone, completely. Which I’m sure is no surprise. Not going to provide a whole lot of detail here, but again, email if you want to know more.
Do you lose weight? OH if only that were the case! Everyone reacts differently to chemo and every drug causes different side effects. For some reason, the chemo drugs used to treat breast cancer typically cause weight gain as opposed to loss. And gain I did!! I gained weight like it was my job and blew up like the marshmallow man. If I’m completely honest with myself, I can’t blame it entirely on the drugs. I wasn’t the most physically active person throughout chemo…unless you consider walking to and from the fridge exercise :( I previously talked about how I was pretty much a permanent fixture on the couch throughout chemo…and lost essentially all motivation to workout and exercise. It shouldn’t have been a surprise that I packed on the lbs. Throw in the fact that I had to receive larger doses of steroids then normal…and you get a puffy, overinflated version of my former self.
Do you get tired? YES. You get very tired during chemo. I think your body conserves and uses all of its energy to fight back against the chemicals flowing through your veins. But despite being exhausted all the time, I didn’t sleep very well. There were many nights where I would be up until all hours of the night because I would get in bed and toss and turn for hours. My body had the aches and chills you experience with the flu, so I was very restless. I couldn’t get comfortable so in turn I didn’t sleep very well. I took a lot of naps during chemo!
What was the scariest thing about going through chemo? The scariest thing throughout the whole chemo process was my allergic reaction to taxotere. A small percentage of people are allergic to the drug…and unfortunately I was one of them.
After being reassured for the 10th time by my nurse at my first round of chemo that I wouldn’t feel anything, they started my taxotere drip. Within in a minute, I swore that I was feeling “funny” but thought maybe I was making it up in my head because I was so nervous. Within the next 30 seconds, things went bad really quickly. My chest got really heavy and I could hardly breathe. My skin got really itchy and turned red. My lips went numb and I couldn’t speak. I broke out into a sweat and started shaking uncontrollably. It was all very quick, like I said, a matter of about 30 seconds. Within the next 30 seconds, 4 nurses and 2 doctors came to my rescue. They threw the privacy curtain around me, removed my taxotere drip, and replaced it with saline. My blood pressure sky rocketed and it’s safe to say I had a serious meltdown in my chair. I was incapable of calming myself down. I couldn’t stop shaking or crying for a solid 45 minutes.
My oncologist debated whether or not we’d be able to finish my treatment that day which launched a second round of hysterics. The thought of having gone through the mental preparation and the last two hours of prep work and pain…and be told that I may not be able to actually get through my first round of chemo was devastating. Fortunately, he agreed to let me try to have the drug administered again with high doses of Benadryl and dripping at a really slow pace to see how I would do.
So, I was given the extra steroids and allergy drugs and they started the drip again. I stared at the drip in fear until the drugs took over and I fell into unconsciousness. And fortunately, when I woke up again, the whole thing was over!!
What was the worst thing about going through chemo? The scariest and the worst are two very different things in my opinion. Despite my allergic reaction being very frightening, it was not the worst thing about the whole chemo process.
For me, the worst thing was losing my sense of self, my identity. Losing my hair, gaining weight, feeling so depressed and out of sorts made me feel like an entirely different person. I wanted to crawl in a whole and hide. I didn’t want to see or talk to anyone. I shut people out. I kept everything in and wouldn’t let anyone help me. I was so embarrassed of myself and really just wanted to escape reality. I know it wasn’t the right thing to do….but it was all I was capable of doing at the time. And not to say that I am 100% recovered from that…because to say that would be a flat out lie…but I am getting closer and closer to my old self every day. I can’t believe I’m really going to share this photo….but it does a really great job at capturing just how pathetic I felt at the time. This was taken in early December, about a month after my last round of chemo. It’s pretty crazy to think that this was just 5 months ago!
What was my favorite part of going through chemo? I can assure you I was never asked this question by a single person in the last 8 months…but I thought I would throw it in for the hell of it….and give any other people out there going through chemo a small silver lining.
The infusion center is kept at a really cool temperature. I’m not sure why exactly…I think it has something to do with the drugs needing to be kept at cooler temps…but whatever the reason, it was a welcoming environment with my frequent hot flashes. Even with the hot flashes, it still got pretty chilly in there at times. To keep all the patients comfortable, the infusion center has these incubators of sorts heating stacks of blankets. You could grab and use as many as you want while you were in there….and they felt sooooo nice and comforting. I think I used a good 6 or 7 at each round of chemo.
I know there are plenty of other questions that could be addressed, some more personal than others, so just shoot me an email. I am more than happy to share in my experiences!
I participated in the Jeans and Jewels charity event on Saturday night that I talked about in my last blog. It was actually a lot of fun! I got to wear a cute outfit and pretend that I was a model for the night!! I got my hair weave styled and make-up done by professionals… and was very happy with the finished product. I of course forgot my camera so didn’t take a single picture….but some should be posted to the event website soon…and I will post those on my blog next week. One of the highlights of the evening was the new pair of shoes I walked away with. The stylist originally had me in a pair of wedges with only a 2 inch heel (not cute). I saw a pair of heels and she asked if I’d be comfortable walking in heels…I said the higher the better!! So in the end, I wore these shoes and was given a 20% discount off when I bought them!
My hair is continuously becoming more and more of a cotton ball as the weeks go on. This is good because it means that it’s growing, but it’s only a matter of time before I officially outgrow my wig. My hair hangs out the bottom already, and because of the curl, occasionally pokes through the hair on my wig. I know the time is coming in near future where I won’t be able to keep the curls at bay anymore and may have to retire my wig (eek!). So I’ve been trying to come up with cute and creative ways to feel comfortable going out in public with short hair….and still feel like I look like a girl.
My solution….decorative headbands! I found what I thought was a cute selection at the mall this weekend and bought a few. I wore one out when I treated myself to a birthday manicure on Saturday…and received multiple comments about “how cute my hair cute was”. If they only knew!! SO, I am counting on my friends and family to tell me their honest opinions. Cute or not cute??
Wow….this turned into a really long post!! Photos from 6 months post chemo are below…..