The hair loss aspect of this journey started from hour one and is probably one of the most talked about topics with my fellow warriors I’ve met.
During my meeting with the doctors, when they told me exactly what cancer we were dealing with, we went over the treatment plan and the side effects that would come. They couldn’t possibly list every.single.side effect in one pass, so I actually had to choke out the question amongst my tears and stuttering breaths: “and is hair loss included in that?” I’d had hope that the drugs in my regimen wouldn’t include the ones that cause hair loss since it wasn’t in the list they’d just gone over… That hope was quickly squashed with their confirmation that within weeks, patients typically lose their hair. Their words along with “we found a shadow in your x-ray” and “the biopsy of your tumor results indicate that you have a type of cancer called primary mediastinal large B cell lymphoma” were probably the most gut wrenching words I’ve heard throughout all of this.
Hair loss really means cancer. The cancer that I’ve seen on TV and in movies and with members of my family. This is REALLY happening.
Given this was such a constant and traumatic part of this whole PMBCL phase of my life, I wanted to gather it all in one place and share a bit of what I went through. Complete with a lot of pictures, below are the different stages that I’ve gone through so far.
Disclaimer: This post is going to cover a lot of different time periods and my improper tenses are going to drive me (and maybe some of you) nuts, but I’ve procrastinated enough pulling this together!
Post Diagnosis, Pre-Chemo: What Do I DO
Once I semi got my shit together after leaving the hospital after my diagnosis, I researched what other people have done in my shoes. All sorts of chemo regimens cause hair loss, so I figured plenty of people had input and advice. (Cool caps were out of the question because of the 4 rounds of 24 hour infusions I was doing-it would be impossible and a pain in the ass to keep a frozen cap on my head. Plus, my doctor said there isn’t enough proof out there that it actually works) Pretty consistently people mentioned hair donation, that a short haircut will help me feel more in control as hair loss kicks in, and to shave it all once things really start rolling. Sounded reasonable so I set that plan to mind for when the time came. Most of what I found to handle the resulting baldness was just one answer: a wig. Sounded simple and I verified that my insurance plan would cover it. I brushed that off though (silly since it would be “free”) and figured I could find a good enough wig online. That way I could get some fun ones, and Halloween wigs have always treated me well….
A few wigs were ordered and a fun, and a purple one was put on my gift wish list. I decided I wouldn’t try them on until I got to the point of needing them though and moved on to researching hair donations since the garbage wasn’t any productive way to use the length I’d been maintaining so I’d have options for our wedding. I looked up different organizations and settled on Beautiful Lengths by Pantene because the hair would be used to make wigs for women diagnosed with cancer. I worked with a neighborhood hair stylist to figure out a short haircut that would still allow for the necessary length (still kind of regret not being more extreme and fun with the style) and chopped it all off. The style was great walking out of the salon and I was shocked at how much length I still had, but it was not great for my hair texture so I’m not looking forward to that bunch of work as I grow things back out. Here’s the before and after:
At this point I gave myself a pep talk to get used to selfies. I’ve never taken them, and even had trouble making online dating profiles way back when because I just didn’t have pictures of just me in them. I now wanted to have them track how things went, and maybe to share in a forum like this (I was still unsure about doing a blog). Looking back now, I’m glad that I did make myself get comfortable with the uncomfortable – I’ve got all of the phases of my head documented, kind of like a moon calendar.
By the way, if you’re thinking of donating to the Pantene program at all, you may need to keep looking. They announced this summer that they will be discontinuing the collection of donations because of more women choosing artificial wigs given the advances and added comfort vs real hair – and that they have enough hair for 4 years of wigs!
Chemo Round One: The Build-Up
Just like any little vacation, I packed a hair brush, shampoo, and conditioner in my overnight kit for my first PMBCL chemocation. I didn’t pack my normal razor because of Doctor’s orders. Because of the chemo, my immune system would take a hit and she didn’t want me to risk getting cut and then that getting infected without my body having the ability to defend itself. I got my first ever electric razor off of Amazon, and let me just confirm what you all can probably guess… it’s just not the same. One perk to losing my hair not too soon after this time was that I didn’t have to deal with that damn thing.
I was partly cursing my hair during this time while trying to soak up my time left with it. I was so sore and beat up from my diagnosis stay that I hurt everywhere and was just completely wiped out. Taking a shower with a long plastic glove, taped up to try to be waterproof, was exhausting, and I relied on others to get it all set up each time. I’d leave showers that I could still manage solo feeling like I’d worked out. As much as I hated it, it was my hair, and I wanted it to stay. It’s a horrible waiting game trying to figure out when it will start to fall out – I totally got why people just chop it from the beginning. Keeping my haircut though felt like a transition period I needed so I went with it.
Post Round One: The Drop & Going Out In Public
Hair doesn’t start coming out as soon as the drug starts to get infused as I was paranoid it would. Any scalp itching or tingling, real or imagined, was investigated and pondered over. Imagining me trying to pull my own hair out? You’re spot on.
With the 4th of July coming up, my sister in town, and being a bit removed from my first round, I had gotten used to being pleasantly surprised when I’d give my hair a tug and nothing would happen. Round 1 was pretty much side effect free after a week away from the hospital so I had hope that I could maybe go longer than average with my hair. Suggestion: don’t get ahead of yourself. Looking back at it now, if people usually lose their hair 3 weeks after getting that chemo drug, then I should have expected my hair loss to happen before that. My more intense, day after day, 24 hour regimen at the hospital means I got more of the drug more quickly than most. Duh, that means to expect it sooner.
I was showering on the 4th of July, a week and two days after I’d finished Round 1, and there it was… a small handful of hair literally in my hand (see pic below). It was unreal how it all seemed to happen in an instant. I kept running my hand through my hair and it just. kept. coming. and all at the same rate. At some point, you just have to stop playing with your head because there’s no end until a few days later. I cried. I bawled. And then I felt silly for being upset because I knew this was coming. Then I got upset with myself for being hard on myself… Once I composed myself I realized it wasn’t coming out in chunks from the same area. That meant no bald spots so I’d put off buzzing my head.
Many trips to the trash bin later, wearing a hat all of the time in public to prevent any gross messes, and another day of a higher rate of hair loss made me decide the night of the 5th that it was time to just buzz it. My thinking being that as all of the early reading had told me, that it would be far less traumatic to see tiny bits fall out than longer strands. J made it happen. We set up his barbershop in our bathtub and D held my hand. Yep, I cried again. My vain side treasured my hair. My skin has always been a pain in the ass so I’d always reasoned that “at least I’ve got my hair!” With this going on along with the worst break out of my life from the IVF meds, I was one unhappy camper. Did I love the buzz cut after? No, I felt like a young boy. I did like running my hands over my buzzed hair though… even if it left the hairs all over my pillow and hands (see photo below). Definitely learned not to wear light colored clothes! Here are pics from the those days and my instagram venting/sharing:
update! – J is moonlighting as a barber and the secret is he does it for free in our tub
In all seriousness, nothing has made me cry more besides the overall diagnosis. I knew hair loss was coming and thought I was ready… Showering on the 4th, with small bunches of hair coming out each time I passed a hand through my hair though, I learned that I wasn’t. A day later, sick of those handfuls, I went for the buzz with J and D by my side
I kinda loved my hair. It’s a bit vain, but also in a comforting way it’s something that’s always been there. When I think of it more it’s something that has pretty much always been under my control – the cut, how clean, up/down/curly…. Seeing it come out and seeing a buzzed or future bald head is a pretty strong and constant reminder of what has happened, what is still to go, and what is out of my direct control. I can literally pluck almost any hair I want to off my head. My body is so out of my control and I’m getting a good lesson in what to let go of and what really truly matters
I’ll control my thoughts though and know that this means the chemo is going after the cancer cells too. I’ve also always been curious about if I ever did cut my hair like this so yay for a #bucketlist check! (And for more fun I def watched GI Jane the next day)
While I did the brunette buzz I would hang my head over the trash bin and just shake/rub off endless pieces of hair. One day, maybe about 3 weeks later and after Round 2, I think it all stopped and I was left with random strands all over my head. Should I have shaved or buzzed it down earlier? Most definitely! It just kinda crept up on me since I wasn’t checking the mirror as many times as I used to. Thanks, J for letting me walk around looking like an electrocuted mad scientist! 😉 My advice is to buzz it down with a 1 or just shave it all with a razor.
At this point I tried the wigs on. I liked just a couple that I’ve kept, but once I tried them on (even with one of the comfort caps) I realized that a bald head makes a wig so much more uncomfortable. I think this is the point where I just said fuck it, I’ll wear a hat or rock my head – flat spot and all! Did I stand out like a sore thumb and were people staring? For sure! I was and am still self-conscious at times when I go out. But more often than not, my bald head was my badge of honor and I felt like I shouldn’t be ashamed of something that #1) I couldn’t help and #2) that I’m battling.
Who is to say it’s taboo and that a woman without hair isn’t beautiful? I decided to pair my nearly hairless head with my confidence, and if I thought I was beautiful, then that is what really mattered. Don’t get me wrong, I wore outfits, did my makeup, and wore jewelry to help further boost that confidence, but in the end I didn’t want to work to drastically change how I naturally looked for the sake of making others alter their behavior and thoughts. What I wore would be for me.
J played a huge part in this. He buttressed me and never flinched with any phase of this. He always made me feel beautiful and attractive in his eyes and has loved so much on my bald head that I think he’s kind of sad to see it go. My friends and family (and all but one of the little kiddos) were amazing as well. They treated me the same as they always had, which is all I ever wanted from them (for kids who usually asked why I cut my hair, I explained that I was very sick and the medicine made my hair go away for a little bit and they good). Everyone’s support further reinforced that those who matter, don’t care about what you look like. The saying of “it’s what’s on the inside that counts” has become my motto (otherwise I don’t think I would post the pictures that are coming up later).
Round 3 – 5: Leveling Out
At this point I could mentally soak in the hair status at it steadied. I’d lost most of the hair that I was going to lose, but my eyebrows and lashes were still hanging on. What some of the cancer blogs don’t mention is how you’re really going to lose hair EVERYWHERE. Yes, ‘downtown’ and in the ‘backyard’ too as someone on instagram put it. They also don’t mention how weird your face feels without any of its natural fuzz, or how runny your nose will be when you don’t have any nose hairs to catch anything. This all makes crying a super slippery affair. Great mental image, I know.
I started to appreciate the newer ease of a shower. A nurse gave me a PICC line cover another patient was passing down, and that made me self-sufficient for showering again! That paired with no shaving or long hair to wash definitely streamlined a few things. Is it a total time saver? Ehhh, not totally. That time saved was offset by moving slower in general because of the treatment, worrying about and dealing with the PICC cover (a life saver but still another step compared to a normal shower routing), really exfoliating all over, and moisturizing like I’d never moisturized before. Also, I still put a little bit of shampoo with tea tree oil on my head, just to make sure to take care of that skin. I buzzed my head a couple times during these middle rounds as the few remaining hairs on my head were growing – I swear!
To boost my mood during Round 5, I revisited wigs. I figured a wig may help with the look. I ordered a real hair wig this time, reading great reviews and thinking I would like it more than the others I’d ordered. I literally gagged as I opened the box and tried it on. Needless to say, I didn’t keep it. It is crazy what treatment can make you react to (i.e. hospital food menus about made me throw up).
Round Six & Early Recovery: I Didn’t Recognize Myself
Now the hair was really going. The chemo had finally gotten to my eyelashes and brows going into Round 6. They were so sparse by then that I could count what was left. And they just kept on coming out even 4 weeks after chemo! I was too stubborn to pluck them even though I probably should have. It was like I thought them being there would encourage the rest of my hair to grow back sooner – as if there’s such a thing as role model hairs.
This was when it was really hard to look in the mirror
No hair, no eyelashes, no brows, and VERY pale. I really really didn’t feel like myself. Maybe that’s why they do 6 rounds of this chemo… because reaching the end of chemo was plenty good for distracting me from my looks. I kid, but at 4 weeks post-Round 6 I had moments when I was pretty frustrated there was no hair growth in sight. I had embraced the hair loss phase, but it was time for it to go according to all of the stats and other warriors I’d met! I really hadn’t ever felt so unlike myself throughout treatment (diagnosis is another story) – I looked in the mirror and I just could not recognize the person in front of me. Losing the hair on top of my head was traumatic, but I’d say not having lashes or brows was probably worse. I had already been floored with losing my hair, so I think I was just numb to it all at that point.
Maybe if I was artistic and could recognize the actual proportions of my face (how eyes are in the middle, lengthwise, and all of that stuff we were told in art class growing up) I’d have been more familiar with myself, but my face was just so empty and looked like cancer. I was glad that during recovery I really wasn’t going anywhere and didn’t really have any need to look at a mirror. When I did happen to venture outside (didn’t need any blood draws or visits to the hospital anymore though!) I very quickly got used to winged eyeliner (to create the illusion of lashes) and to drawing on my brows. The brows were definitely the hardest since I’d never done anything but pluck them, and there was not much there to really guide me to get my old shape. A few youtube videos later though, and with the help of this pencil (and my tiny, guiding, 20 brow lashes), I got pretty comfortable. This oil cleanser has also been a great way to clean off my makeup, by the way. Way easier than my old routine of wetting my face, putting on cleanser, and washing that off.
Post-Post Round 6
About 5 1/2 weeks after chemo I realized that there was FINALLY some hair growth! Especially with my brows! I didn’t realize the weight I was carrying around, but there was definitely a lightening in my mood when I realized it. Almost everywhere but my legs and head had some pretty legitimate growth! Nose hairs, face fuzz, tiny little hairs on my hand… all of the stuff you sort of forget about after 5 months of relative baldness!
At 7 weeks there was a BIG difference everywhere. A lot of plucking and even a bit of bleaching or derma planing was necessary on my face, and hair growth all over my head was visible. I basically had my old eyebrows back, and the great news was that I got to start all over and shape them! Before losing them I’d always promised myself I’d grow them out and reset – there’s always a bright side! The places you don’t want to grow back though, do. My other facial hair (chin, upper lip, etc) all came back with a vengeance and all dark. Super… BUT can I say how cute little baby eye lashes are?! Definitely a sight for sore eyes (pun definitely intended).
I didn’t run into any issues, but I got a tip from my PMBCL twin that I want to share in case this is relevant for anyone… She suggested to definitely scrub the scalp area and everywhere during this phase. With all of the new growth there could be in-gown hairs, which exfoliating will help prevent.
As happy as I am to see my hair coming back, I am not too fond of the in-between phase I am entering with uneven growth and all of these visible, spiky, individual hairs. Maybe it’s all my own perception, but that’s all that matters right? And I didn’t want the return of the mad scientists so I’ve collected a few scarves that I can use as a head wrap. They are definitely a bit of a statement, but they’re a nice step up from wearing a baseball hat around all the time. They’re also way warmer.
This week, at 8 weeks post-chemo, it’s my first time using a razor. It probably would have happened way sooner if I lived in tank top-friendly weather though. Just needed it for my underarms. Legs are still clear.
I’ve also started digging into the topic of laser hair removal. I had heard people’s hair comes back lighter and thinner, but my hair is definitely darker in all of the areas where I don’t want it! My diagnosis twin said to keep an eye on my back too…. WTF? I feel like there’s so much that people don’t share (motivating me more here to probably share TMI). The softer hair is what I’m seeing for now on top of my head. Since all hair everywhere started out white/blonde, as in I can see a tiny bit of white at the end of my eyebrow hairs, I am not sure of what everything is going to end up looking like. More waiting and being patient! For now, with my little buzz, I’ve developed a habit of petting myself on the head. I’ll say it’s my new pat on the back. Pretty proud of what I’ve done to get to here.