On being (involuntarily) bald
Last week, I wrote that my hair was starting to fall out. I debated cutting it off Thursday, but wasn’t sure where or how to do it. I know some cancer patients smooth shave their own heads, but since I’d never done it before, I was nervous to try. I had also been told that it was dangerous to use a razor in case you got nicked and it got infected.
On Thursday, I bought a beautiful sun hat. I got it mostly to keep the sun off my head and shoulders, but also because it was beautiful. I was also shopping for a fedora style hat since I’d borrowed one last weekend and Jonathan said it looked nice. I told him I’ve always avoided hats because I feel like they make me look like I’m a cancer patient. He said, well you are a cancer patient. I know, but that doesn’t mean I want to look like one. I’m realizing that I need to learn to view hats as accessories instead of a just a way of covering my head.
By Friday morning, I felt like it was too patchy and messy to leave it as is. I was also starting to feel the emotions of losing my hair. I find that it takes me a couple days to really respond to hard news, and Friday was right on schedule. I felt constantly on the verge of tears. My energy was also waning as the week went on and I’m sure that had an impact on my emotions.
That morning, some friends came over to help pack for our trip to California. With them watching the kids, Jonathan and I went to find someone to cut my hair. We decided to go to the local barbershop, which I’ve been to before. Since I was feeling really vulnerable, he went in ahead of me to explain the situation and ask if they would do it. I ended up in the chair of a nice man who suggested just taking it down to a 5 o’clock shadow length, but it was long enough where it still came out when I touched it, so he cut it all off. I cried a little bit, but no one minded. They were all very complimentary toward me.
When we got home, our friend’s son immediately said he liked my hair cut, but one of the girls said I looked funny. I can’t remember all their exact responses, but they weren’t fans. One of them said they thought people at church would laugh at me. I told her that no one was going to laugh at me because they know why my hair is gone, but that I know it looks different and kind of weird.
I felt really tired and struggled some throughout the weekend. I ended up missing a concert with my dear friend on Saturday night because I was too tired, and knew we’d be up at 5am to go to the airport. I was advised to wear a face mask when traveling, so I did. Elin hated it and kept asking me to take it off. I found a fedora to wear, but wearing it combined with the face mask, made me feel like I was wearing a sign that said “I have cancer”.
Our trip to California was uneventful. Everyone was kind. The girls did well on the flight. I felt really self conscious though. I continued to struggle with how I looked and the fact that 1/4 inch less hair so dramatically changed how I was perceived. I felt like it was suddenly obviously that I was a cancer patient. I also suspected that people were viewing me with pity – that mom has three little girls and has cancer. None of this could be true, but it’s how I felt.
Over the last week, though, I’ve thought more about this shift and am wondering if the change is more dramatic to me than to anyone else. As long as I’ve had my hair short, people have questioned whether I’m in treatment. The other day at the park, a lady said something to the effect of liking the way I wore my hair, and an old man said I had a nice head. I didn’t get the feeling they were commenting based on me having chemo hair.
Whether my hair is as shocking to others as it is to me or not, it’s still been a hard adjustment. It is yet another reminder that I do in fact have cancer. That my cancer is bad enough that I’m having to do chemo. When you go around looking and feeling almost normal, it’s easy to forget, but my shiny, bald head is now a constant reminder. And though I don’t think I look terrible, I don’t like how it looks. It’s not my choice, and that is also hard. It definitely gives me more sympathy for people who experience physical changes beyond their control (like hair loss).
Prior to cutting it, my sister suggested that I anoint my head with oil after the cut. She was referencing the Psalm where it says the Lord will anoint my head with oil in the presence of my enemies. She said this symbolizes me trusting God to heal me through chemo, wisdom and good doctors. It ties in with the prayer my friend sent me asking God to bless the means (chemo) made use of for my healing. Can I view my bald head as a reminder to ask God to bless the work of the chemo?
It’s been over a week since my hair was cut, and my scalp looks almost the same. There’s a tiny bit of fuzz growing, but it’s like all the hair on me has just stopped growing. Thankfully, the rest of my body hair has followed suit. It’s only fair, right? I’d be mad if I had no hair on my head but still had to shave my legs every day.
In other chemo news, last Sunday and Monday I felt really achy. On Sunday I thought it was because of something I’d done on Saturday, but by Monday, my legs and hips were aching really bad. I realized that the previous Monday after treatment, I moved a small desk and ended up in so much pain that I had to take medicine to sleep. I’d been told I would feel achy after I take the medicine to rebuild my white blood cells, but the timing was off. I can’t say for sure that’s what it is, but one week after treatment is supposed to be when your white blood cells are lowest, so I wouldn’t be surprised if there’s a connection. (I know some of this may seem like random information, but I often write with a future cancer patient reader in mind.)
We have been in California for the past week and in Tahoe since Saturday. Here we met up with friends and family including my little brother from San Diego. It’s been a wonderful trip and I’m so thankful to have an extra week to feel normal before I have my next treatment.
Dose 2: My hair is falling out
I had my second chemo treatment on Monday. Yesterday, I took a shower and saw a couple little hairs wash down my chest like I had just given myself a haircut. But I hadn’t. I washed my hair, and when I pulled my hands away, there was hair on them.
It’s so weird how much this surprised and upset me me, even when I KNEW it was coming. Granted, I had a nurse tell me it usually comes out 21 days after starting, which would’ve given me until Monday, so I guess I thought I had a few more days.
I thought about why it was so alarming. It’s not like I have a lot of hair to lose. I’m used to very short hair. I think it’s probably just one more reminder of what my body is dealing with. One more thing saying “you have cancer”. Another loss I have no control over.
I pinched at the hair, just to make sure and it came out in little quarter inch clumps. I went downstairs and asked the girls if they wanted to see what it was like. Alida shied away (I don’t blame her- it’s weird), but Farrah and Elin were all about pulling my hair out.
Then I went over to Jonathan and he hugged me while I cried about losing the teeny bit of hair that I have. I’ll probably go to the local barbershop and see if I can get a clean shave sometime in the next few days before it gets too patchy.
Today is dose 2, day 4. This week has gone a million times better than the first week. I haven’t taken a nap yet, but did go to bed at 6:45pm last night. I’ve had enough energy to slog through the closet clean out portion of Stasia’s Style School. I can only assume it’s because I stopped taking one of the nausea medicines except at night. My appetite is decent, and when I get a wave of nausea, I have a vape pen that has been helping.
Today I’m at Real Health Medical for a Vitamin C IV. I haven’t been here since before my mastectomy, so it’s been good to see everyone. They are prepared to support me in any way I need during chemo. Thankfully I just haven’t needed much. The Vit C is a low dose and meant to support my immune system, but not supercharge it in a way that could interfere with the chemo’s work.
I’m hooked up to Penny right now, which is how I have both hands free to type. Yay!
Penny the Port
Last Wednesday, I had surgery to install my port. I was surprised to learn that it was a full-on, no food after midnight, anesthesia surgery. I guess it makes sense, but ugh. Another surgery.
The day before and morning of, I felt a lot of anxiety about it. I’m not sure exactly why. I’ve had about a million surgeries, but this time, instead of having something removed, I was having something added. It was upsetting to be back at the hospital again so soon. The nurse was worried about my veins so she gave me a shot of lidocaine before inserting my IV, and let me tell you, it just made it worse.
I woke up from surgery with a painful knot just inside my shoulder blade and my whole left shoulder in a knot. I thought it was the position I was in during surgery, but I was thinking about this last night and I’m sure the amount of anxiety I carried into that surgery had something to do with it. I went home that afternoon and felt good that evening aside from the pain in my shoulder and back. It became excruciating and I had to pull out some old surgery pain killers for it. It was annoying that the pain I was having wasn’t even related to my port. I couldn’t even feel the port location for a couple days.
It was also discouraging because I knew last week was my “good week” and here I was having surgery and pain that was interfering with what little time I had to feel good. I got through the next couple days and felt good enough to go to a concert on Thursday and a party at a lake on Saturday. Both of those were incredibly life giving and fun.
My dear friend Barry, his sister Nancy and I
Watching my hot husband tear it up on one ski – first time since I’ve known him!
I went to the chiropractor on Friday and she said she thought that the pain was a combination of mental stress and physical stress. My body was responding to the intrusion of the port. My mind was using my body to protect the port so I was hunching my shoulders. And it was a generally stressful week with the kids. Some days it seems like they just fight and argue from the time they wake up at 5:30am.
I’ve spent a lot of time over the last year thinking about stress and how it affects my health. I believe stress was a major contributor to me having cancer. From 2010 to 2016, we had no less than 3 major life events every single year including international moves, job changes, local moves, giving birth 3 times, having 2 miscarriages, dealing with depression and many other personal/family challenges.
I learned a lot about the impact of stress on your body when I started at Real Health Medical in the fall. I have been intentional about saying no to things and being conscious of what is too much/stress inducing. I also had a friend point out recently that from the time you are diagnosed with cancer, your stress levels escalate. It seems like even when you don’t feel stressed, there’s some level of it there under the surface. So here’s another painful reminder that I need to continue to manage my stress.
I felt gradually better as the weekend went on, and only had a little pain when I went for my second treatment yesterday. Since I had already done it once, the only stressful part was doing it with the port this time. Every time I have chemo, I have to get blood work beforehand to make sure I’m strong enough for the treatment. This time, since I had my port, they were going to use it. The nurse told me that it doesn’t normally hurt going in, but people can be bothered by the pressure it takes to put it in. Ugh. I was dreading it and wanted to cry. Thankfully, she also told me it was normal to feel emotional and good to cry if I wanted to. So I did, and it ended up not being a big deal at all. It didn’t hurt. And the whole rest of the treatment process was truly so much better with the port.
We met with Dr. Z after the blood draw, and he said my numbers looked amazing – like I hadn’t even had any chemo. We talked about my medicine and I found out that I can just take the Zofran and use the one that makes you really tired as needed. Last week I was taking both of them around the clock. He also gave me something to help me fall asleep since the steroid makes my body feel restless even when I’m exhausted. He said my super power is metabolizing things that make normal people go to sleep, so it might take an elephant tranquilizer to put me out. I agree with the tranquilizer part, but am not sure about the super power part.
Last week when I got the port put in, I had several people tell me how it would become my friend and that some people even named theirs. I posted that online that night, and that’s how Penny the Port came to be. She’s a little bigger than a penny, and costs way more than a penny, but as my friend Annie said “No such thing as a bad friend named Penny. Penny adds life to her friends. She’s never a sourpuss.” So Penny she is.
This morning I got an oncology massage. Last week Jonathan kept encouraging me to get one, but the idea of putting myself into someone’s hands with this weird port and how uncomfortable I felt made me nervous. I was reminded that there a places that specialize in this though, so I went this morning and have continued to feel better in my neck and shoulders. I’m tired now, but I’m still awake which is better than last week. I’m hoping for an early bedtime and good sleep.
Disbelief and reframing
I wish I had written yesterday. I stayed awake all day on Thursday a was feeling hopeful. Like, if I’m feeling better already, I’ll just keep feeling better and I’ll get through this. And I still do feel hopeful in that way. I’ve just had a lot of moments in the last couple days where I’m still in disbelief that this is my reality.
It’s been 5 weeks since my surgery. I’ve adjusted to living with one breast, but I am not at all used to only having one breast. It still catches me off guard sometimes when I take my bra off, or when one of the girls lay their head on me and it’s right on my ribs.
It seems like some people are confused about what’s so distressing about losing a breast (and I know it isn’t distressing for everyone.) For me, it’s not about my femininity or my sexuality. I’m still me, thankfully. It’s just that a whole part of my body that I’ve had for 20 ish years (saying I had boobs in my late teens may be a stretch) is gone. How long would it take for your pinky to be gone before you stopped noticing and missing it? Or your belly button?
Along with those feelings of disbelief are the ones where I can’t believe I’m going through chemo. I’ve been anti-chemo my whole life. I know that isn’t fair since chemo has saved many lives, but that’s how I felt. I used to think there was always another way. How could poisoning yourself really be the best option? And while we’re at it, I was so opposed to hormone therapy. Why would I want to cause hot flashes and weight gain and decreased sex drive? (I have kids for that!) When I was presented with these options in the fall, I couldn’t even consider them. Yet somehow, I’ve come to a point in my health, where these are the best options for me.
So this week, while I languished in the (thankfully mild) effects of chemo, there were a lot of “what is going on and how did I end up here?” thoughts. How does my best life involve me with one breast and chemo coursing through my veins? But it does.
Then today, I was really tired. The girls stayed up late and woke up early. I couldn’t go back to sleep. I was impatient and frustrated. I’m functioning like half a mother when I want to be 100%. There are some behavior things that feel like they need to be handled better, but I don’t have the energy, so I just get mad. I get mad that Jonathan isn’t doing everything and mad that he has to do everything.
Then I realize that this is going to be our normal for a good long while. That’s hard. Because otherwise, I was sick earlier this week and I’m getting better now. But I’m not. I’m going to go through this over and over. And that makes me really sad.
My little sister left with all of the girls, and it was time to rest. That’s when I had another unpleasant realization – I hate resting. And this is a week after our church retreat where we focused on rest and quiet. On Sabbath. I’m so bad at it. I’d rather be doing stuff. Getting shit done. I’m not made to sit around in bed all day. I mean, it doesn’t help that I can’t really focus on reading or doing anything mentally stimulating right now.
But I have to learn to. As Jonathan reminded me, resting is my job right now. I know that sounds heavenly for so many of us, but it isn’t when it’s forced on me. One of my cousins told me the other day, “Think of all the times you wished you could get more sleep…now is your chance. Let your body put its energy towards fighting & healing. There will be better days to come.”
My older sister asked me today what lazy/productive activities I liked, and suggested that if I could find something to do while resting, I might enjoy it more. So far, I thought of online shopping, but after viewing my post-surgery haul, that isn’t sustainable. (I may have bought a new bed and some art.) I actually went through my closet, did my style school homework, and did some stuff on the computer which was chill but satisfying. I do need to reframe my thinking about the next few months. Recognize that we are in this for a good chunk of time so I need to figure out how to make it work. Figure out that balance between wishing it away and missing out on life.
I cut my hair this morning. All my haircuts are the most anticlimactic pre-chemo buzzes. They’re just haircuts. I wonder if this will be the last one or if I’ll cut it again next week. I heard it starts falling out after the second treatment, and since I usually cut it once a week, I should have at least one more cut between now and then.
The rest of me feels pretty normal. My mouth feels funny sometimes, but I’ve mostly been able to eat all my meals and enjoy them. I’m still drinking coffee. I’ve been swishing coconut oil for 10 minutes at a time several days, which is supposed to help prevent/heal mouth sores. (Why is it called oil pulling??)
So here we are. One week down, and I’m not counting how many to go.
Your strength > my weakness
Today is day four. Since the afternoon of day two, I have been mostly sleeping or lying down. I’ve never experienced such debilitating fatigue. And even when I wake up from 12+ hours of sleep, I don’t feel rested or energetic. We are looking at my meds and seeing what, if any of them, are contributing to this. Most of them are just for the first 4 days, so hopefully it will improve a little. Last night I was unable to respond to text messages, it was that bad.
Jonathan has been doing almost everything on his own. Meals continue to be brought and we’ve had friends come by to entertain the kids for a couple hours here and there, which I know has been helpful, but it’s hard not being a fully functioning mother and partner. Hard to be in a position where getting their clothes out for them is all I can handle.
This morning as I walked down the stairs, I remembered the verse in 2 Corinthians 12:9 – ‘But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.’
When I am weak, He is strong. And I sure am weak right now. I’m not ready to gladly boast in my weakness, but I will try. Every once in a while I’ll think, what if I feel like this for the next four months? And get the feeling that this is forever, but I need to fight those lies. This is temporary. It’s a means to a cancer-free end, God willing. But ugh, it sucks feeling like this.
I’m sitting at my desk smelling the honeysuckle come through the open window next to me. If there was ever a time to be sick, this is it, when all of nature is bursting with beauty and color and gorgeous smells.
This is what comes blowing through my window every morning. The garden is due to all my parents’ hard work.
Chemo: dose 1, day 1
I started an Instagram post, but it was getting too long. Also, since Farrah and Elin have shared a bedroom the last two nights, I’ve found they fall asleep faster if I sit in their room and ignore them, all the while enforcing quiet and rest.
Today was good. It started off well with a hug from my older brother and sister-in-law who were passing through, and seeing the faces of my sister and her family in China. I felt awake and alert. I wore something that made me feel pretty and alive. Something red per my style school prompt for the day.
Then we dropped the girls off and were heading to the doctor. I had bought the Book of Common Prayer with me because a dear friend had sent me a prayer from there last week, and I wanted to read it again. I was feeling tears at the back of my eyes, and then started crying. I’m not completely sure why. I was and am afraid of chemotherapy and what it is going to do to me. I don’t think it’s bad to be afraid. Our pastor says that being brave is being afraid but still stepping out anyway. So I am afraid. Also dreading the unknown some.
Here’s the prayer, adapted for me: Almighty God our Heavenly Father, graciously comfort your servant Grace in her suffering, and bless the means made use of for her cure. Fill her heart with confidence, that though at times she may be afraid, she yet may put her trust in you; through Jesus Christ our Lord. Amen.
She said it’s going to be hard to bless chemo, but that we’ll try. I’ve been trying to reframe my thinking and recognize that chemo is my ally, not my enemy. My brother-in-law said “the enemy of her enemy is her friend”.
While we drove, I read this prayer and parts of Psalm 23. I’ve really been liking the part lately when it says he prepares a table before me in the presence of my enemies. It struck me that in order for someone to sit down and eat a meal, they have to be, or at least feel, safe and peaceful. God isn’t giving us a meal that we have to devour while hiding in a foxhole or on the run. Since cancer is my enemy, this tells me that even in the presence of cancer, God will allow me to rest and be nourished in peace. I haven’t fully hashed out what that means to me, but it has kept recurring in my mind (also thanks to Camila’s blog post about it), so I wanted to mention it.
My friend also sent me me a song and a breath prayer (something we learned about at our church retreat this weekend: Inhale – I am no longer a slave to fear. Exhale – I am a child of God. It’s okay to be afraid sometimes. It’s not okay to let it rule me. I didn’t want to show up for my first infusion in tears, and thankfully I stopped feeling like crying shortly before.
I started with a blood draw around 8:30 and getting my IV put in. (I wasn’t able to get my port put in last week because of my doctor being out of town.) The nurse who did it was so good and I barely felt it in spite of her being a little concerned with how flat my veins were. Small goodnesses, right? They have to wait for the results to come back to make sure I’m good to go, so we went upstairs and waited a while. They gave me two pre-meds in pill form (Zofran and a steroid) and then gave me another anti-nausea in an IV. All the things I need to take are overwhelming.
The most stressful part once I got into the infusion chair was getting this little thing on my arm. It’s about the size of a floss container and at 27 hours, it starts releasing the medicine that rebuilds my white blood cells. After the nurse put it on me, he said in 2 minutes it will start beeping and then it’ll feel like a rubber band pop as it implants (?) something the size of a grain of rice in my skin. Once it started beeping I just kept thinking “do it already”, but when it finally did, it was like the babiest rubber band pop and didn’t hurt. Relief.
We came home and did all the normal things. Around dinner time my mouth started feeling sweaty, and as time has gone on I’ve felt queasy enough to lie down and eat some ginger chews. I realized I was behind on my medicine, so I took both anti-nausea medicines. I’m not sure if it’s helping. I’m going to bed soon. I’ll be getting some medical marijuana stuff (I don’t know all the lingo yet, but it’s mostly oils) soon and I’ve heard that it makes a huge difference in how you feel post-chemo and has many cancer-fighting properties.
Oh yeah, Jonathan is home all week! He got it worked out with his bosses and I am so relieved. I’d appreciate prayers for him, that God will sustain him in all ways, while we go through this.
To bed, to
The cloud
I’ve been staying up too late this week and therefore not getting enough sleep, so I’m going to try to make this fast.
I’m starting to think that there’s a pattern of ‘I feel fine the day I receive hard news and then the next day I fall into a slump.’ Tuesday and Wednesday were major blah days. And it feels lame to just say I feel blah, but that’s how I felt. Tired. Lethargic. Like crying. Overwhelmed. Drinking coffee all morning because I think it’s going to put some pep in my step and then feeling dehydrated and headache-y in the afternoon because of all the coffee.
I want to be prepared for how I’m going to feel, but since I don’t know how I’m going to feel, I don’t know how to prepare. I don’t want to have someone here 24/7 and I feel fine, and don’t want to be without help and feel terrible. (I know that won’t happen, but it still comes to mind.) I watched a YouTube diary of a woman who is just a few months ahead of me doing the same AC-T regimen, and it was sobering. It’s no joke.
For those of you more into the nitty gritty of our daily lives here, this is Jonathan’s month to fly, but it looks like he might be able to teach the two weeks I have treatment instead of flying. This would be a huge mental and emotional relief to me.
I’ve been looking at my to-do list and feel like I’m preparing to go off to war or something. I have to remind myself that life isn’t over on Monday. I’m not going to cease functioning. But in spite of knowing this, I am definitely carrying around a dull sense of dread. Like when you anticipate an upcoming vacation and it gives a bit of joy to every other aspect of life – but the complete opposite version of that feeling.
I have one of those apps that tracks your cycle and today it said “PMS is coming”. Normally this message just annoys me (maybe PMS is already here), but today I thought “not if chemo gets here first.” How has this invaded every fiber of me? I don’t like it.
My right eyelid has been twitching off and on for weeks. I think it’s either caused by being tired or by stress or both. It’s annoying. And it has become a twitchy little reminder that I have something causing me stress.
Yesterday, I went by a waxing place and noticed that they do henna tattoos. Recently I had been talking about how I understood women who tattoo the place where their breast used to be. The thing that was once naturally beautiful is gone, so they fill it in with something else that is beautiful. I am in no place mentally or physically to get a tattoo, but Christine wondered if it might be nice to get some henna done.
So after I got Farrah from school, we got tattoos. The women there were gracious and kind. They kept reassuring me that God would take care of me and that everything would be good. They also showed me videos of yoga breathing that they said would help me. I thought they might be taken back by my request, but they looks at people’s hairy parts all day, so it’s probably okay. The smell from the mud ended up making me feel sick several hours later, but it was dry by then so I just washed it off.
Just about every day when the mail comes, I am happily surprised by some sweet note or thoughtful gift. I will never be able to express how grateful I am for these. Yesterday, I got a package from a dear couple who I haven’t seen in way too long. In it was a children’s book called “Cancer Hates Kisses”. I mention this because it is the most perfect book for someone with children who is dealing with cancer. It explains everything in simple and understandable language.
I opened it and Alida immediately took it and read it to me. It starts with a mom and goes through surgery, then chemo, losing hair, feeling sad, feeling bad, having radiation, all the while listing all the things that cancer hates – cancer hates laughter, cancer hates love, cancer hates hugs, cancer hates high fives. The timing couldn’t have been better because she read things that I haven’t even gotten to tell her yet, and we got to talk about it some.
Over the last few days, after some days with epically bad behavior, Jonathan and I decided that we needed to rearrange the girls’ bedrooms. They have their own rooms right now, but Alida gets displaced whenever we have someone stay with us. Sometimes she only moves to her (very large) closet, but it’s still disruptive. She is a person who really enjoys her space.
In preparation of a summer that will probably require a lot of guests/help, we bunked Elin and Farrah’s beds in Farrah’s room, so they will share and Alida will have Elin’s room. Farrah and Alida are thrilled. Elin is off at GranMary and Grandpa’s, but hopefully she will find sleeping on a bunk bed and not being alone at night to be an upgrade. It sucks to have to make decisions based on such a long term disruption of our lives.
I know this is kind of a downer post, but you should know that today was a much better day. I got a lot of things checked off my list and didn’t feel blah. And for that I am grateful. I have an EKG at 10am tomorrow (Friday) to make sure my heart can handle the chemo. I’ve never had one, but Jonathan said it’s the easiest medical test you can do, and that’s a relief.
