Chemotherapy is going well and I’m tolerating it better than expected. Some days suck, but nothing too dramatic. I’ve managed not to throw up over the two treatments I’ve had, though I certainly feel like it some days.
The entire process of receiving chemo is surreal. I have a port-a-cath (called port for short), a device that was surgically inserted into my lower neck and shoulder area that allows the nurses to put the IV line directly into it, thereby saving my already stressed veins from the continual new stress of chemo infusions. The port leads directly into my jugular. Those who know me well know that I am completely creeped out by anything, except diamonds and gold, touching my neck. It’s my theory that in another life, I died from some neck-based trauma. My kid constantly tortures me by blowing on my neck and I almost laid Stephen flat one recent day for coming up behind me with a feather and teasing my neck. So to know that I have a fixed device that I can see and sorta feel imbedded in my poor neck is just one other thing I’ve learned to Don’t Think About. That’s my core technique for surviving the day-to-day reality of being a cancer patient. It’s not denial. It’s avoidance. If I can mentally pick and choose what I will and won’t focus on, I get through the day much more calmly.
An infusion day for me is a day off from work. It has to be. I’m too dizzy to drive after the chemo. I go in early. They have a big room set up with comfy recliners and a large TV. I’m hooked up to the first of five drips, usually starting with fluids, moving on to steroids, and then comes the Good Stuff, the two chemo drugs.
The cocktail I am currently on is AC, which stands for the brand names Adriamycin and Cytoxan. These two drugs are very common in the treatment of early stage breast cancer. The Adriamycin is the creepy one. It’s toxic red, and administered in my port tube by hand, slowly injected, with the nurse carefully covered to prevent any direct contact between her skin and the drug. Some people have reported crying red tears after receiving Adriamycin. Not me. But my pee is a lovely shade of dark orange for a day. (Yep, you had to know that.) It takes about 3-4 hours to do this regimen and I have two more to go. After, it’s onto the Taxol, once a week for 12 weeks total. Then I’m done.
During my wait, I work on my laptop, sew my slow-growing hexie quilt, watch movies, chat with the other patients and staff, or just veg-out. I like down time and I’m never bored so this is doable. Then I go home and do absolutely nothing. The last treatment, on the day before Thanksgiving, left me nauseous right after, which was different from what I did the first time and what I was told to expect. But in the days after, the effects were very mild and manageable.
I don’t feel these drugs going into me, and the once the needle is in my port, I don’t feel that either. It’s always the idea of what’s being done to me that is disturbing, which is why I relegate the whole experience to the Don’t Think About pile, especially while I’m sitting there. Included on the big list of Don’t Think About are:
- My lack of boobs and the fact that my chest region looks like an AED blew up next to me
- My weight (I’m not allowed to lose and encouraged to gain, which I don’t want to have happen)
- The fact that I go to bed most nights at 8
- That I can’t travel until we’re done with all of this chemo
- That my brain feels like mush most days
- Clothes shopping is a complete waste of time until after my reconstruction happens in the late spring (at least I’m saving money)
- The holidays are coming and I don’t have the energy to do a quarter of what I love doing at this time of year
- MY HAIR
I hate how cancer has taken over my whole life, along with my kid’s and husband’s. It’s become my new full time job, on top of the two I already have and being a mom and wife. But I can’t fault the team of amazing doctors, nurses and others who help, nor my amazing friends and family who constantly check on me and love us up and down. This is what keeps me and mine going, the love and concern.
Last week I started losing my hair–fast. I knew it was coming. We waited for it, prepared for it by cutting my hair short. But on that first morning last week, when I ran my fingers through my tresses and saw strands coating my hand, I was frightened and upset. Tuesday I started wearing a scarf to work. Wednesday also. Thursday morning, on Thanksgiving, Stephen and Sam shared the Wahl electric buzzer and I stepped into the world of a Marine recruit. The two of them were adorable. Me, not so much. I look just like my younger brother, whom I love, but who I don’t want to look like. Sorry Pete.
My angst isn’t over my vanity, completely. It’s more about how not having hair makes me look sick. And in looking sick there are times I’m treated differently. Which is what I don’t want. I struggle mightily and mostly successfully (I believe) to be as normal as possible. I am capable of working. I want my brain cells to be engaged and stimulated. I want my family to not have too much of a drag on their lives by having to take care of me unnecessarily. This is essential to MY healing process and the absence of my hair sets that effort back many steps.
Yeah, there are wigs, and I actually bought a very nice one over the weekend, which I can’t figure out how to make look as good on me at home as it did in the store. We’ll leave that effort for this weekend. So instead I’ve got a small assortment of head scarves and that’s what I’m wearing right now. It’s not bad, and I take the time to make sure everything else looks good. But it’s not my hair, which I learned to love.
My hair was thick and coarse, and growing up in New York City, where the humidity is high and the wind is strong, I pretty much never had good looking hair. And more so as a teen when I was trying to control the stuff, but without the knowledge of products or good cuts to help. Every girl I knew had layered cuts, a la Farrah, but I couldn’t get my hair to roll that way. One time, when I was 14 and became inspired to have a way-cute short shag cut (this was the 80s), I instead ended up with Chia Pet Head for 10 months, until it grew out enough to put in a ponytail. Yep. Bad days those were.
Moving to the West Coast was the best thing to ever happen to my hair. Dry climate = manageable hair. Since, my hair has become my toy, something I’d play with during the day, my favorite accessory and my identity to a great extent. It took me four decades to figure out how to master my crop and now I don’t have it. I feel gipped and pissed. And I do worry that it won’t come back in, or will be much lighter. I’ve seen this happen to several friends, with this chemo, so this isn’t a baseless concern.
Before anyone dares to tell me all the things that I already know: it will most likely come back, it’s only temporary, it’s better than dying, etc…, let me just say that I speak my emotional truth here. Not my practical, logical, conciliatory truth. Being bald, for me, is the biggest personal emotional blow in all of this. Period. I don’t care how cute my husband and friends say I look. I don’t care that I “rock the bald” as Samantha says. I don’t care that I make pirates jealous. I care that cancer has taken one more thing from me and this one little thing is the very thing that makes me cry. So there.
I will get over myself on this topic. I’m already inching toward bald resolve. But, just for today, well, maybe this week, I’m allowing myself to wallow. A little.
I thought *I* was the only one who had “Farrah Hair Fail” and the “Chia Pet Cut”!!
Hang in there, girl. YOU GOT THIS. The hair will grow back, and these days of being the bald chick from Star Trek will just be a memory. ::hugs::
I could have written this (less eloquently, but still…) 11 years ago. You’re doing so well! The supportive team of oncology nurses, your family, your friends really help, don’t they? The hair thing is the final insult. Logically, we know it’s not important… but in our hearts, it hurts. I did find that getting ready in the morning was much easier – so there’s that 😉
My heart is with you, Jake. xoxoxoxo
Jake, your stories are a source of strength for me. I have had many affects from chemotherapy drugs that I suffer from now. I get inspired reading your stories and try very hard not to complain that every day I suffer silently in pain. Forcing myself to carry on and work til I drop. You and the strength you have make my positive outlook even stronger. Keep up all the good work. I’m proud of you for how you are dealing with this. Makes me realize why we get along as well as we do. Hugs Boobala
Thank you Darling! I’m doing the best I can and I’m happy in general. Except for my hair.
So glad to hear from you Jake, thank you for taking the time to write this all up. And yep, I would be in tears too over the hair loss. Funny how that helps define how we see ourselves and think of ourselves. But the wig does look great if that’s a tiny bit of consolidation next week! Prayers and careful hugs!
It sucks. Losing your hair sucks. Of course it will come back, but right now, it sucks, and I wholly and fully validate you. Saying “it will grow back” is well-meaning, but minimizes your present experience.
When I had breast cancer, I appreciated people who validated my feelings at any given time, rather than hearing how I looked fine and the dark circles under my eyes were becoming, or giving me a suggestion about the benefits of raw foods, or reminding me it would all be over eventually and it beats dying (which carries the hint of shaming–“well at least you’re not dead!”).
Yes, we know all those things. But right now…it sucks.
Wallow, Girlfriend, wallow away. As long and as much as you want.
Thank you Darling! I’m wallowing away…
I love that wig. Actually that wig is hella hot! Once your hair starts growing back in, keep it around in a bedroom drawer…. 😉
You’ve earned your wallowing rights, Jake! And as awful as all of this is, it does make great material for your book. As a friend, do what feels right, whenever.
My usual advice, this too shall pass. And we’ll all be here when it does. Much love to all of you! Hugs and prayers as well.
i just lost my eyelashes and my eyebrows are thinning rapidly to chemo treatments. To me that is much harder to lose than the hair. 12 weeks in this last week I’ve been mistaken for a “sir” twice.
Okay that sucks too. We can wallow together.
I’m not sure I could handle cancer nearly as well as you are. Keep it up.
As I said before, I’m learning a lot reading these posts. Being a male, though, I could probably handle hair loss easier than you because I’ve already lost so much. (Hope that brings at least a grin.)
Big grin Sweet John!!
You are one helluva lady Jake!
When I was first told I had cancer and would need chemo the first thing I thought of was… I am going to loose my hair and be violently ill. My doctors explained that traditional chemo does not work on my type of cancer, therefore I will be taking chemo pills for the next three years. There is more hair in the hairbrush and sink than there was before, the nausea come and goes and all of the other weird things that happen to your body that never did before. It’s hard to know sometimes if it’s the meds or am I just getting “more mature”. Either way, I am still here after being diagnosed 15 months ago and plan on sticking around a lot longer!
FIGHT LIKE A GIRL AND KEEP KICKING ASS!
Your wig looks cute, if you ever need tips on styling my daughter Ashley is a stylist and she would love to work with you.
Thank you Patrice!!
Hey Jake, if you should ever feel like you’re wallowing (or sitting on the pity pot) TOO much, you can always set a timer. Give yourself a limit, like an hour or 2 a day, set the timer for that long. You don’t have to use up all the time in one sitting either. If you feel like jumping off the pity pot, turn the timer off. And back on again later should the need arise.
And you could always put on the “support bra” I sent. Well, maybe only if you have some Depends handy.
Love you sweetie! You have a fab attitude, and you are definitely allowed to “Don’t Think About It”.
Hairy or hairless, it doesn’t matter. You are a beautiful woman. It comes from the inside as well as out. Revel in that! And, in time, your anxiety, your sadness…this too shall pass.
Tell someone everyday what you need, whether it is a shoulder to cry on, ice cream or whatever it is…then let them do it…
Let us all know what we can do…
sending prayers from Sugar Land, TX
Wallow all you want, we’re here to listen. You are in my prayers every night.