November 14, 2018 · from Lesley’s original CaringBridge journal
[Preface: I have tried to finish this post several times already and each time I just wasn’t able to get all my thoughts together or either I just couldn’t hit “submit” and share this part of me yet. So if some parts seem disjointed it is due to them coming together and morphing over the past months]
The post in which Lesley discusses the elephant in the room. (and if you didn’t get a hint of A.A. Milne in that sentence please go find a six year old and start reading Winnie the Pooh with them – you won’t regret it) And by elephant, I mean this is going to be a long one so you may not want to dive in unless you’re committed to enduring some serious rambling.
I once held the belief that the process of becoming and the existence of being a mom stripped one of any shred of dignity one had – boy was I mistaken. Well, I mean it does, but I do believe that being a breast cancer patient trumps that by quite a bit.
Losing my hair was a process. When I first knew I would be taking chemo and would lose my hair I knew I wanted to donate it before it started to fall out. I have had two friends that have had breast cancer and both times I donated my hair in their honor. It just seemed like the natural thing to do this time – I would much rather it go to someone who can use it than just in the trash. Before chemo I had it cut super short and bagged up the ponytails. Just as they said it would, it started coming out much more after my second treatment. That Sunday I told Marsh to go ahead and shave it. (Good thing too because he started the stomach bug the next day) It was hard. I cried – a lot. The boys came in one by one to look at it and each declared it “not that bad.” Marsh was great – he kept telling me that it still looked like me, just a little GI Jane-ish (and hey, she’s pretty bad @$$ right?). For me, it was just the beginning of more and more ugly in my eyes. I was so afraid of it scaring Gus and him not recognizing me, I didn’t want to leave the bathroom – the kid never missed a beat – sweet smiles and still just wanted me and insisted on grabbing my neck and pulling my head down to his while he went to sleep. This was a bittersweet blessing during this hard step.
Now actually being sure enough Mr. Clean/Marsh bald took a bit longer. The stubble that was left on my head did start to turn loose as the hair follicles got burned with the chemo, but the hair didn’t fall out on its own. My head started to hurt. When I would put a head wrap on it pulled on the tiny hairs and felt like needles all in my head. Actually any time anything touched my head it hurt. One night in the shower I decided to try to scrub it out. My hands didn’t do such a great job so I tried a rag. That was the ticket so I scrubbed and scrubbed and watched all the tiny hairs wash down the drain. I kept doing this until I couldn’t stand the pain on my head. Now my head was all patchy looking. The next night I tried laying down in the tub and soaking my head for a while first and then doing the washrag trick again. This seemed to get the rest of them out. The bottom of the tub was covered in tiny prickly hairs. I watched them go down the drain too. I was finally bald. As the weeks went by and I saw myself in the mirror my eyebrows fell out and to me it seemed more and more of me faded away – I looked more and more manly and less and less like Lesley.
But now in true Lesley fashion I had not gone into this unprepared. I had ordered wigs, wig supplies, and various head wraps. I didn’t like this part but I was ready for it. Well, I tried the wig on several times and couldn’t ever get it to feel and look right – plus I was a bit concerned about Gus pulling it off. So I just went with toboggans and the head wraps look while I continued to try to figure out the wig. One Sunday I tried it on getting ready for church and didn’t hate it so I decided to go for it. Gus cried when he saw me. That was unnerving but I had to laugh – here I was worried he would be thrown off when we shaved my head, but it was the wig that looked exactly like my real hair that threw him off. I went ahead and wore it to church – most people hadn’t seen me since I’d lost my hair so they thought it was still my old hair. It itched. I was constantly concerned about it getting crooked or falling off. It was hot. I was not comfortable. Did I mention itchy and hot? And we were heading into Spring and Summer. I was done with the wig. That was the first and last time I wore it. I had too many other things to deal with and that was too much personal maintenance for me.
Time went by and I got more comfortable with my no hair look – I also realized it offered more opportunities to talk to people. One Friday soon after my wig day we were at the doctor for bloodwork week and as we were leaving and getting on the elevator another couple joined us. This was her first visit – I could spot them easily now. This look of fear, despair, and dread can’t be covered up. She had “the folder” in her arms with all the chemo info. As soon as the elevator doors closed she broke down. I looked over to her with a knowing smile and assured her that it did get easier. Through sobs she said, “I looked across the room and saw you with no hair, laughing and smiling and I was wondering how.” That sealed it for me – no way was I going back to the wig. Had I had it on she would have never known and I wouldn’t have had the opportunity to encourage her in the same way. I was gaining confidence and the peace that passed all understanding. I was going to make the best of this – I was going to find the good – I was not going to hang my head in shame with these head wraps – I was holding my head high. God was carrying me through this storm and I would look for opportunities to share what He was doing. Not having hair helped break the ice. Being young, bald from cancer, and out with a bunch of kids – one strapped to my chest most of the time – got quite a lot of looks. This was fine. I didn’t care for the pity looks, but the “wow, I can’t believe…” ones were encouraging. Lots of people just looked, but some would want to talk. Many good conversations were had. So many people I didn’t know would come up to me (at ballgames mostly – because I didn’t get out much other than chemo) to let me know they had been praying for me – being the one girl with no hair helped single me out so they knew who to talk to 😉
About halfway through my Taxol treatments (this was the second phase of chemo for me – the 12 weekly treatments that were much easier to tolerate) I noticed some stubble growing back on my head. Now you would think I would be excited about this. Instead it freaked me out – did this mean the chemo wasn’t working as well??!!! While Dr. Wells assured me I was getting the good stuff and it was doing what it was supposed to I still asked him each week if this was okay. The eyebrows coming back was nice but the eyelashes caused issues. Right before the end of chemo I got a bad stye – I continued to battle these as my lashes grew back in. In July Marsh tried to convince me to start going without the head wraps. I wasn’t ready yet. Early August I tried gelling the little bit of hair I had for a doctor’s appointment. It wasn’t that bad. Marsh told me he was going to quit going in public with me if I didn’t get those things off my head (this is his way of encouraging me 😉 he’s so gentle, ha!).
Having my hair back is nice, but it is a bit weird being still so close to cancer and no one can tell anymore. Now let’s discuss what it looks like for a second…everyone else I heard from said theirs came back darker and curly. I was pretty stoked about this. I should have known better – I can’t even do cancer normally, I have to go my own way. My hair is as straight as it’s ever been and has a mind of it’s own – I can hardly tame it. And the craziest thing of all is….it’s blond!!! When it first started coming in it was almost white blond, then a dishwater blond, then dark hair started. Now everyone asks me who did my highlights. One thing we know for sure now – where the boys all get their cowlicks from – mine is just as prominent in the exact same spot. I’ve had so many people tell me I should leave it short – but I just want my ponytail back! (but now I wonder if everyone is thinking it looks bad long!!! What is a girl to do?!). We have compared my short hair to different celebrities along the way – earlier on Ellen DeGeneres was mentioned – now I have dubbed it the Christopher Walken hair.
A little side story – Gus is so observant. He was one of the first to notice my hair coming back in. He kept reaching up and rubbing my head. He also noticed my eyebrows and lashes coming back in too. He would reach up and feel of them too – then he started a little game that he still does when I rock him – he fake eats my hair, eyebrows, and lashes while I say “hey, I worked hard to grow that stuff!” He still likes to rub my head.
Now the other matters of lost dignity I was talking about:
I have lost count of how many strangers I have had to undress in front of this year. All of a sudden my private body parts have become everyone else’s business. Not to mention when folks want to ask about your cancer you find yourself talking to everyone about your private areas. This is unsettling on so many levels and how to navigate this I am still unsure. At the beginning I did think “how am I going to handle BREAST cancer with a bunch of middle school boys at home?!” As far as the boys go, we have always been very open with them so we continued with that policy. I have explained every step of this journey to them in detail – their imaginations are way worse than reality so I know this has helped them process. I don’t want to embarrass them but there have been some pretty funny conversations had this year with my fellas. Surgery brings on even more uncomfortable conversations – I mean, really there is no way to discuss it without talking about things I am not 100% comfortable talking about. I’m a fairly open person in general but this brings me pause. I don’t care to be crass so I’ve tried to speak about it and maintain what little shred of dignity I feel I have left here. There are more surgeries to come so I will have more opportunities to practice. If I ever figure it out I’ll let ya’ll know.
Clothes don’t fit well. Without going into all the embarrassing details there I will just share that it poses many challenges right now. I’ve had to buy some new clothes that work and try to decide what old clothes to hold onto for a while to see if they may work again some day. The other Sunday I wanted to stay home because I couldn’t find anything that looked okay to me. Thankfully Marsh kicked my tail into gear (in his oh so subtle way) and drug me to church anyway. I still look in the mirror and it doesn’t look like me, but it’s slowly getting there.
For years my boys have brushed my hair for me. (They’ve also gotten hot wheels tires stuck in it) That was one thing I have missed. When my hair started growing back in they would come up to me, grin and ask “can I rub it?!” We would laugh and they rubbed it like it was a good luck charm or a pet either one. A few nights ago one of them came up to me and said “hey, can I brush your hair?!” Those were the best words to hear. Healing is happening….
(if you’ve made it all the way to the end….bless your heart! Extra love and chocolate to you tonight! I owe you a drink)
Comments from CaringBridge
Kim Lathrup — 11/17/18
You go girl! Grammy Martin is certainly smiling down on you and all the guys!
Ondra Lee — 11/15/18
You are one awesome woman, and you are blessed with some great men (of all ages) in your life. 🙂 I love you!
Nancy Sullivan — 11/15/18
Love to read your posts, Lesley! We pray for you every day and sometimes twice. Glad you are back home with your family and prayers for complete healing!
darice davis — 11/15/18
Lesley, you are such a trooper! I really admire your strength!
Gerry Brooks — 11/15/18
Lesley, your “conversation” about the road you are on is wonderful. You are so up front and true with your words. The inspiration you give is wonderful. You are truly a strong woman. Continuing to keep you in our prayers. Here’s wishing you and your entire family a very happy Thanksgiving.
Renee’ Tew — 11/15/18
Hi Lesley! God bless you and your precious family. I so enjoy seeing all of your pictures and following your posts. I’m so very glad that the Lord led us together in Knoxville. My dad is doing wonderful. In fact we just got back from Indiana so that my mother could go see her big brother. God bless you, Lesley and your family. Happy Thanksgiving and Merry Christmas! (Been so waiting to say that last one!!) Renee’
Debbie Parker — 11/15/18
I love you! I’m so glad your hair came back! Your words are so true, and transparent. I have empathy with watching yourself fade. The first time my sister saw me bald she said I looked so much like Daddy! I cried for a long time about looking manly. Funny now, not then. I continue to pray for complete healing for you and death to cancer. Give those boys hugs and kisses from me!! And though I love your long hair, I really do like it short. It makes you look wise and confident.
Amy Peed — 11/15/18
So thankful for God’s many provisions that continue throughout your journey! I look forward to seeing your pretty ponytail again one day 😘
Jennifer Waters — 11/15/18
We were just praying for you earlier tonight! I’m so glad you wrote this. Thanks for sharing these hard things. Praise the Lord for healing.❤️
Kim Watts — 11/14/18
Continuing to pray! You are so strong and handling this with such grace.
Cancermamma 