It's been a while since I've done a cancer treatment update. That's mostly because my cancer treatment has taken a backseat to the rest of life--which means two things.
- The rest of life is actually more stressful than cancer.
- My cancer treatment is going well and not affecting my day-to-day much at all.
Rounds #2 and #3 went about the same as round #1 of Taxol chemotherapy.
In between treatment 3 and 4, I had a two week break from chemo. It was pre-approved by my doctor, because I was planning to pick my kids up in Chicago after their month-long summer RV trip with my mom. BUT, that break actually allowed us to be able to leave town a week earlier than we expected in order to be with my family.
My father had been sick and hospitalized for two weeks and it became suddenly apparent that he was not going to get better. So the week of July 17th to 26th was a really rough (but also wonderful in many ways) week. We were traveling, tired, emotional, stressed, not eating or exercising well, and grieving the loss of my dad. But---here's the amazing thing: If I'd had surgery when I expected to in July, I might not have been able to make that trip--and I NEEDED to be there with my siblings that week. God knew.
When we returned from Chicago, we got back to as normal of a routine as we could in this weird world...now filled with not only cancer and COVID, but now and grief and loss as well. 2020 sucks in so many ways.
At my 4th Taxol treatment, I had the opportunity to meet someone new. Usually everyone around me in the treatment bay is very quiet and quite a bit older than me. But that day I got to visit with another mom in her 40s who looks a whole lot like me with her bald head, big earrings and smile. In fact, when Ben saw her leave the building, he thought she WAS me and had to do a double-take!
She's going through her own breast cancer treatment, and it was kind of nice to chat with her and each of us understand a little better than most what the other is going through. Unfortunately, her story is at a much more serious stage. As she was finishing up her treatment plan from her initial diagnosis, she found out that her cancer had spread to her spine and brain, making it metastatic, stage 4, triple negative cancer, which is a very grim diagnosis. Even still, she sounded hopeful about her treatment options, determined to do all she could and faithful that God would take care of her and her family throughout it all. I felt privileged to have had a moment with her.
I went home that day feeling a much heavier weight of this whole situation than I normally do. Talking to her was another very sobering reminder of what this disease does, especially on the heels of my father passing away the week before (also from a very aggressive cancer.) At the moment, I don't really feel like that's where my story is headed, because so far my cancer has responded very well to treatment and didn't even show up on my last mammogram. But, I have to acknowledge that there's more than one possible outcome to all of this, and cancer recurring or spreading, though in the smaller percentage of possibility, is still a possibility. Even when my chemotherapy treatment is finished and surgery is over, this possibility will hang over my head for the next 5 years while I take an estrogen hormone supressant drug (which is also when the most likely chance of recurrence would happen), and then probably for the rest of my life. Definitely sobering. In general, I'm not dwelling in that space long though. And you shouldn't either.
My 5th Taxol treatment was uneventful (although I waited forever to see the doctor beforehand for a regular meeting with him). But since I'd been feeling physically great throughout all the other treatments so far, with little to no side effects, there wasn't much to discuss. He did mention that my hair would likely keep growing, while some continued to fall out. When I'll have a REAL head of hair still remains a mystery.
Right now my chemo treatments take up about 2 and 1/2 hours when I go. I get all sorts of suggestions from people on how to pass the time...but I've found it's the perfect time for me to catch up on my blogging. So I prepare all my photos ahead of time and spend my treatment time at the cancer center doing all of the journaling for those posts on my laptop. Since I'm also drugged up on Benadryl during that time....it's probably not my best work! But the chair is comfy, the room is quiet, it's something I enjoy doing, and distractions are minimal--so it makes my treatment time productive and time moves quickly! It's kind of like hanging out at a coffee shop without all the great smells.
So far, on Taxol, I've been able to maintain a 5-6 day a week workout schedule, at pretty high intensity (with the exception of my week in Chicago, where I only exercised twice). I've been doing the daily Burn Boot Camp workouts 5-6 days a week, so it's a mix of high intensity interval training, weights, cardio and body-weight exercises.
I get up by 6 am everyday, go to bed around 10:30 or 11pm, and have plenty of energy and mental clarity throughout the day. I've continued painting and had plenty of work to do when we returned from Chicago, but didn't have too much trouble catching up and physically accomplishing all of it.
Being able to keep up with all of that and have good energy levels is my personal gauge for how I am feeling, how my body is responding and how much treatment is affecting me. So far, it's been a breeze -- hardly noticeable, particularly in contrast to the AC chemo treatment, which was awful for 5-6 days after each treatment.
However....this week (after Taxol #5), I have noticed that I am much more tired by the afternoon, often need a nap, and feel more physically fatigued and weaker during my daily workouts. I'm not certain that's related to the chemo, but I'm trying to make note of it and let myself rest a little more often if I need to.
I've had a lot of additional emotional stress over the past several weeks. School is about to start (kind of...on a hybrid in-person/virtual schedule), activities are beginning again, and our calendar is filling back up quickly--while also changing constantly as COVID policies dictate. That alone is enough to drive anyone crazy. Life just feels overwhelming. It's really difficult to properly process the BIG things (and there are a LOT of BIG things to process in our lives right now) when there are so many little things that have to be taken care of every day.
Historically, since I was diagnosed with Graves Disease in 2018, any time that I am emotionally stressed, my body physically fatigues. So perhaps the extra tiredness is just that? Or perhaps Taxol is finally starting to take it's toll. Only time will tell.
For now though, we are trucking along...
Several weeks ago (right around the time of my 2nd AC chemo treatment), the ladies at Burn made me a shirt that said "Together We Fight" and asked me to take a photo of myself in it. I didn't know what what it was for, until I saw a post in our Facebook group, announcing a pre-order for shirts to anyone who wanted to buy one to support our family. I thought maybe 20 or 30 people would buy one, but as I watched the preorder comments roll in, I was absolutely overwhelmed with how many people chimed in to order. Over 170 shirts were bought and made just for me.
This is love. This is sisterhood. This is BURN.
In the past few months since my breast cancer diagnosis, the Hoover Burn family has loved and cared for me in literally hundreds of ways and moments. My "Burn sisters", as we call ourselves, have shown up continuously with gifts, phone calls, cards, flowers, text messages, prayers, meals, [social-distancing] visits, words of encouragement and support in leaps and bounds. Today they gave me the money raised by selling these shirts and I was given the opportunity to thank many of them in person.
Each of these women have touched my life in personal and intentional ways and it was VERY cool to see that come to fruition in a visible way through these shirts. These women are more than just my "workout buddies". They have become friends and sisters as well. I truly feel the army of support behind me and it means the world!
Kortney (above) has coordinated weekly flower deliveries to brighten up our house during quarantine, and many of those have been from friends I've made through Burn.
Kati, Janelle and Magen (above), along with Heather and Ashley (not able to be there today) have been a constant support for me in the day-to-day prayers, complaints, and conversations. They are some of the very first people I told about my diagnosis and (along with family and other close friends) and are the real deal. You often hear that some friends will disappear and fade into the background when cancer comes around, but through this process I've found out that I have incredible friends--and not just a couple of them, but more than I can count on two hands! They don't just show up every once in a while, they show up every day, any minute and I'm so thankful for each one of them.
Today, I was particularly grateful to Jim (Burn's owner), who not only has been kind and generous and supportive of me himself, but who has allowed the Burn community that he helped facilitate rally around me unconditionally.
I love being able to share my experience here, to reveal a little of the mystery and unknown and fear that comes with a cancer diagnosis and treatment. Not because it's so unique, but because it's more common than we are aware. If you haven't already been affected by cancer in your life (and many of you have), someone close to you may be fighting this battle one day. Love them. Talk to them. Encourage them. Hug them [if we aren't in the middle of a pandemic]. You have no idea how powerful and meaningful it will be.
After a month off of treatment, and a switch of the schedule, I went back for my first of 12 Taxol chemo treatments last Thursday.
I did MUCH better than the last appointment I had in that building (which was just to see the oncologist). That time, I was nauseus the entire time, from the parking lot through the end of the day -- and I didn't even GET a treatment. So I was pretty worried about how I'd feel going back for more chemo. But other than some pacing and a little bit of anxiety right before I left for the appointment, I handled it well. I did let Ben drive me though, which ended up being a good choice.
These treatments start with several pre-meds to help prevent and treat all the side effects -- Tylenol, Tagamet (antacid), Benadryl, Kytril (anti-nausea) and Decadron (anti-inflammatory). Then the Taxol, which takes about an hour.
As soon as the Benadryl hit me, I started feeling a little dizzy and woozy. The nurse said that was normal, and the feeling lasted for several hours, so I'm VERY thankful Ben was planning to pick me up.
About halfway through the infusion, one of the nurses came in and told us all that someone had sent us an ice cream truck and we could wheel our poison-poles out to the front parking lot and pick out some free ice cream!
I had NO desire for ice cream, but so appreciated the gesture that I immediately set out on the little field trip! It definitely made for a positive spin on a day when I wasn't sure how everything would go or how I would feel.
Honestly, the ice cream tasted terrible and I only ate half of it. But it definitely helped me add some fun and levity to the situation.
I felt fairly similar to how I've felt in the past leaving the cancer center after a treatment -- puffy, tired, a little off-balance and that Benadryl had REALLY knocked me out more than normal. So I'm VERY thankful Ben was there to drive me home. I essentially fell asleep on the way home, and immediately got into bed.
But, about 2 and 1/2 hours later, I woke up feeling pretty good! Still slightly off-balance and puffy, but I was able to eat dinner, wasn't nauseus at all, and my head felt so much clearer.
How I'd be affected by this drug remained a mystery, so I've waited a few days to blog about it. But four days later (Sunday) other than Thursday afternoon, I've felt completely normal!
I woke up early on Friday morning and went for a long walk in the neighborhood with a friend, worked all day and had plenty of energy. Saturday I slept in pretty late, but again, woke up feeling great, did my normal HIIT workout, and had a fun 4th of July with family and friends. Today, I cleaned the whole house and did a few loads of laundry. So it's been business as usual. The only side effect I've noticed so far has been slight constipation from the anti-nausea meds, but otherwise, I feel totally fine so far.
Until I know how and whether my white blood counts will bounce back on their own after each of these treatment, I'll probably try to keep a little more "social distance" than I did in June, but I'm hopeful that infections and sickness won't be a problem--though it's certainly a general concern for anyone getting chemotherapy. So I'm *trying* to heed warnings and be cautious, even though I feel good and want to SEE people and DO things.
Maybe my doctor wasn't lying and this really *will* be significantly easier to handle! So far so good...1 of 12 complete!
Have a plan, but remain flexible.
I say that a lot. It's a good thing, because my treatment plan is changing. Not so much WHAT the treatment is, but the order of events is changing.
From the beginning, my medical oncologist has said that I would do 4 rounds of AC chemo, then have surgery, then do 12 rounds of Taxol chemo, then have implant exchange reconstruction surgery, and continue with Tamoxifen anti-estrogen hormonal treatment for five years. Whew, that's a mouthful.
At my last appointment with him (two weeks after my last AC chemo), he checked my white blood cell counts, which looked good, and he passed me along to my surgeon for phase 2.
I met with my surgeon the following week (three weeks past my last chemo at that point), ready to learn about exactly the procedure for surgery, to be referred to a plastic surgeon for reconstruction consultation, and to schedule a surgery date for early July, while my kids would be on a 4 week long road trip with my mom and Ben would be home with me and available to be my "nurse" post-surgery.
I hardly got a word out when she told me that unless for some reason a patient *isn't* responding to the chemo at this point in treatment, she wants them to do ALL of their chemo before having surgery.
UGH! Why didn't she tell me that back in MARCH? Why didn't my medical oncologist know that and prepare me for that as a possibility???
Let me rant for a minute....because I have cancer, and it's my blog, and I can.
Why does the entire world seem to think it's perfectly acceptable to constantly change plans at the drop of a hat--even though it will affect the lives and schedules in a domino effect of all of the people involved?
My "Have a plan, but remain flexible" motto came from years and years of everyone everywhere just cancelling get-togethers, rescheduling games, changing practices, showing up late, backing out of responsibilities, changing the rules, changing the players, and expecting us to just adapt and show up.
If I charged a personal "cancellation fee" I might be an *actual* millionnaire.
Somewhere, somehow, I learned to write on the calendar in pencil, not expect *anything* to go as it was originally planned, and to roll with the changes. To be honest, that has made me MUCH less irritated when it all changes and shuffles. So I guess it's a good motto--but it still hacks me off sometimes. Clearly I'm not perfect at being flexible.
Back to my cancer treatment...
That means I'll have 12 weeks of chemo BEFORE I can have surgery (likely at the end of October/early November), which means I can't go through any of my reconstruction this summer, which absolutely means I'll have to have my second surgery sometime next calendar year, because it has to be 3-6 months after the initial surgery. I had REALLY hoped to be through all of this by December 2020. Ain't gonna happen. Now I'm hoping for by June next year.
There is good news. The cancer definitely responded to the AC chemo. My tumor is no longer palpable, and the surgeon couldn't even find the clip from my biopsy in an ultrasound, so she ended up sending me to get another mammogram to locate it, which they did, and it sounds like they didn't see much of anything else of concern in the imaging. I am glad to know that all that Red Devil misery wasn't in vain.
Now, after double-checking with my medical oncologist and conferring with him and him conferring with my surgeon again to make sure that this absolutely IS the way it has to be....
I'll be starting chemo back up next Thursday.
So I guess I'll adapt to THAT schedule instead.
I'm irritated that I could have just continued with chemo for the past 3 weeks and have been almost a 1/4 of the way through that series this week, but instead have extended the whole process by a month.
I'm irritated that now it looks like I'll be having surgery in the middle of the best time of year, and that school and sports and holidays and LIFE will be happening all around and I will likely miss out on more.
I'm irritated that everything will be so much more difficult to coordinate for the kids' school and extracurricular activities after an October/November surgery than it would have been in the middle of July when NOTHING is happening.
But I guess it all boils down to inconveniences, not TRUE problems. And there are benefits and a plus side to this schedule too.
- I've gotten to enjoy June, feel great, see friends and family, and go to the gym--a cancer "break" if you will...
- I've been able to continue exercising and hopefully will be able to over the next 12 weeks during Taxol chemo.
- I'll be able to keep working (hopefully) for the next several months during Taxol. (Mobility to paint and wrestle wood boards after surgery may be an issue for a couple of months).
- I'll have more time to research my surgery options.
- Surgical drains will be easier to hide in sweatshirts than tank tops.
- My hair might start to grow back by November?
As for how I feel right now?
Physically, pretty great. I'm a little fatigued, just from all the extra activity in my day and weeks. I have noticed that I have a slightly higher resting heart rate (comparing pre-chemo numbers to during and post AC chemo numbers), but I've even seen that come back down almost to my old normal now that I've been chemo-free for almost a month. I've been working out 5-6 days a week--not at my peak performance level and I definitely get winded faster than I think I should--but definitely still at a pretty high intensity 45 minutes a day, so I can't complain about that. My eyebrows and eyelashes are definitely thinning and will probably go completely at some point with Taxol starting back up. Being bald is WAY simpler than having hair. I'm enjoying the benefits of that, for sure, which I NEVER would have expected to hear myself say.
Mentally, I'm mostly good too. Getting this change of plans news was definitely hard, but I have already felt myself relax today after the decision was more official. I'm getting used to the new plan.
I think it helped a LOT for me to vent a little here. So thanks for listening. :)
First things first. I FINALLY received my genetic testing results. I got a phone call on Friday from a nurse at the oncology center, who told me I tested NEGATIVE -- no clinically significant genetic mutation identified. Which means, I don't have the BRCA gene mutation.
So, (to the best of my knowledge and on-my-own research, as I have NOT yet talked to my doctor about this), my cancer was not caused by a genetic mutation. That's good news for my ovaries (which would have been at higher risk for ovarian cancer and need to be removed), good news for my daughter, my sisters, nieces and mom, who don't need to be as concerned that they might have a genetic mutation. I just got "lucky" I guess? The truth is, only 5-10% of breast cancers are linked to genetic mutations. But if you DO test positive for it, your chances of getting breast cancer are much higher than the general population. So, know your family's medical history, and if you think there's a chance you might have it...get tested early. Prevention is the best medicine.
Moving on to the past week....
I was mentally NOT in a good place going into Chemo #4 of the AC "Red Devil" drugs. I knew what was coming. I knew it might be worse than before--and I just didn't want to go through it again. The only saving grace was that it's the last one of it's kind for this phase of treatment. So here I was...
After treatment I went directly home, and got into bed almost immediately. I feel so bloated and puffy and fluid-filled after these treatments, a little dizzy and queasy and just really really uncomfortable. Hard to believe I went for walks after the first two, because after the second two treatments, all I wanted to do was get into bed and sleep it off. Which is what I did Thursday afternoon/evening. At least when I was sleeping I didn't feel nauseous.
I decided to give Sea Bands a try this round, and wore them from Thursday before my treatment through Saturday morning (when I had to take them off because my wrists were sore and lymph nodes in my neck and underarms started becoming tender and achy. Maybe it helped with queasiness though? I'm not sure I'm a believer. I also took a swallowable pill form of the anti-nausea meds on Friday to try and keep the nauseousness at bay. That seemed to help for sure. I couldn't handle the dissolve-able kind because the taste made me gag (which totally defeats the purpose). But if I took the swallowable pill BEFORE I felt bad, it seemed to help for a few hours. Stay ahead of it, they say.
In any case, Friday I was very weak and tired, and spent most of my time on the couch, but I *WAS* able to eat (salad, a cheeseburger, and plenty of other foods all day) and didn't feel very queasy, so I was thankful for that.
By Saturday morning though, I knew the worst had arrived. With the exception of about 30 minutes in the morning to eat some breakfast, I didn't leave the bedroom, and only left the bed after a strong internal pep-talk to go to the bathroom and eventually take a shower. I felt awful and just need to be laying down--on my side seemed to be the least-queasy position--and being completely still. Even with the anti-nausea meds, I couldn't eat, or drink, and everything smelled awful to me (including the stench that seemed to be coming out of every pore in my body).
Ben was wonderful and checked on me often, bringing me anything I would ask for. I felt a little like a nursing home resident and was really thankful for my big TV and "cancer chair" -- because Netflix was *just* distracting enough for me to forget about how terrible I felt when I was awake. Mostly, though, I just needed to sleep and let the time pass...because I knew eventually I'd start perking back up and feeling a little better each day.
And I did. Sunday I was able to be downstairs more, sit up, eat a little more, and be a little more cognitively aware of everything. Smells continued to be offensive to me, I had a terrible taste/film in my mouth, my skin was very dry (and flushed), and I still felt like I stunk something awful like chemo meds coming out of my pores (but Ben insisted he didn't smell me.) I've never been very sensitive to smell, but almost EVERYTHING is offensive to me all of the sudden. I was glad to have about 20 different kinds of chapsticks to choose from, because about 7 of them would make me feel queasy.
Monday I did some work at my desk, feeling a little better than the day before, but still staying pretty stationary all day.
Tuesday I had to paint signs, but still felt pretty awful (queasy, headache & fatigued), so that was a hard day, because I had to do so much moving around and staying on task.
By Wednesday though, I was feeling quite a bit better (normal even), and spent the day cleaning the house, grocery shopping, and getting ready for a short beach trip. Maybe, just maybe, the worst of all my chemo is over??
Ben shared this message on Wednesday on his Facebook page, and I think he worded well how grateful we feel for our friends and family and neighbors' support as this phase of treatment ends....
I wanted to take a moment at this spot in Andrea's cancer treatment to say 'thank you' to all of our friends, family, neighbors, doctors, nurses, and strangers that have supported her, the kids, and me. We have been completely surrounded by prayers, texts, emails, calls, letters, meals, gifts, and countless other forms of love and encouragement.Sometimes we have been so overwhelmed with support that we can't even adequately show our appreciation. Yes, it has been challenging, but everyone around us has made it not only bearable, but reminds us time and time again that God is with us during this. We have been shown over and over again that we are not alone.At the beginning of this ordeal we started a "love log" -- a journal that keeps track of the ways be people have loved us. Today it has over 50 pages of entries (with some pages having a dozen items) and that doesn't include countless of other things people have done without our knowledge!I could go on and on, but know that it has meant the world to us, and as you encourage and love people around you know that you're making a tremendous difference in their lives, one act at a time. Thank you.
Now, I'm looking forward to a few weeks of feeling "normal" before a surgery date is set and I begin the next phase of this long haul journey...
Three down. One more of these Adriamycin/Cytoxan chemo sessions to go. For real, just looking at this photo makes me want to puke. Not surprising, because for the next several days, these were my thoughts:
THU: Don't puke.
FRI: Don't puke.
SAT: Don't puke. (I puked.)
SUN: Just hold your head up. (Thankfully, didn't feel so pukey). But even that was pretty hard.
Basically, for three straight days I needed to be laying flat and felt best if I was sleeping. Otherwise I felt nauseaus and weak and awful. Hard candies (lemon drops & Halls Breezers) helped temporarily. The anti-nausea tablets I have are supposed to be dissolved on your toungue, and they made me gag. I had a terrible time trying to drink enough water...and am still struggling with that, even today. But mostly, I just wanted and needed to sleep it all off.
The good news is that my head didn't hurt so bad this round, so I was able to watch television between sleeps, which is truly the first time I've had any interest in TV in months!
By Monday, I could move around the house without getting too dizzy or exhausted and didn't need a nap. And I was ready to eat! As soon as the nauseausness subsides, I want to eat constantly. I seem to lose about 5 lbs in that first few days from not being able to eat very much and then quickly gain it all back the second week when I'm more active and HUNGRY.
Ben was wonderful all weekend, and made and brought me any food I requested that I thought I could eat -- which seemd to be lots of hard boiled eggs, toast, avocados & smoked chicken tenders. He also made me *another* corned beef brisket in the smoker--which was AMAZING! Red meat on day 6--it's my jam.
Tuesday, I was able to get dressed, put on make-up and all my accessories--which was a huge boost. I'm not a fan of the genderless cancer patient look I'd been sporting for days.
And by Tuesday night, though I was still worn down and moving slow, I felt MUCH more normal and functional. I was even able to drive and hang out with some friends for a couple of hours, which felt gloriously NORMAL (as normal as that can be in our COVID social distancing reality).
Today I managed a 30 minute walk and an *almost* full day of work, painting signs. So, it's looking like the worst of round 3 is over and I'm back to the land of the living...
Huge thank you to everyone who sent me messages & check-ins this past weekend, brought us food, hung out with the kids, or dropped off flowers! Even when I'm feeling crummy and can't always respond right away, it means so much to me to know people are checking in on me and the family and gives me a little boost each time.
The second week after chemo #2 has been mostly focused around hair (or lack of) & head coverings.
After shaving my head to a really tight buzz cut with the clippers, my hair continued to fall out and thin over the next two weeks. The little hairs would come out everywhere, and kind of hurt to touch or wear hats or lay on. I had kind of expected it all to fall out and be completely smooth faster than that, but when it just got patchy and weird, I asked Ben to shave it with the razor last night down to smooth. SO MUCH BETTER. It feels awesome, and while it's still not exactly a hairstyle I'd choose, I like it better than the thinning patchiness I had been sporting.
I've spent a lot of time getting used to my new look, trying to figure out what I like, what feels comfortable, what feels silly, and how to navigate this new "normal." Which is all kind of weird to do when you hardly leave the house. I change my head coverings at least 3-4 times a day, trying things out. You truly never know what you might see when I walk into a room. It's a bit of a comedy routine, actually....
While chemo #2 definitely hit harder and took longer to recover from, by Thursday morning last week (one week after treatment), I felt back to 100% normal. Since then I've been up and at 'em, doing regular workouts, eating well, sleeping well, and feeling completely fine.
It's like a switch goes off and suddenly I feel normal again. Which feels AWESOME.
In my "good week", while I feel great, I've been able to hang out with Ben and the kids, visit with friends, run a few errands and do stuff around the house. I even decided I was able to get back to painting signs and making a little money again. I managed to find a good rhythm that will allow me to keep fulfilling orders without too much of a change in my turnaround time. Since I have a long way to go ahead of me (surgery + recovery + 12 more weeks of chemo), and I don't know what my capabilities will be for each of those stages, it's felt good to get back to some normal work routine in the meantime while I am able.
Definitely what makes me most happy though is that once I've recovered each time (so far), I've been able to jump (literally) back into my workouts. I don't know that that will be the case all the way through, so I'm enjoying and thankful for each one!
Otherwise, the only other side effects I'm dealing with seems to be a runny nose--no nose hairs will do that to you--and trying to figure out what I want to look like each day! When you've looked mostly the same for your whole adult life, all these options are pretty overwhelming -- even for an accessories junkie like me.
I think *no* to the Chiquita Banana Lady look, but some of those scarves will be fun (even if I do look a little like a pirate). And I've started a wig collection...blue, red, long & curly so far. If only I had somewhere to go...
I did ventured out in public in my curly wig the other day. It felt both odd and completely normal. It looked totally unremarkable to anyone who saw me, but I wonder if I would have felt funny (or phony) if I had run into someone I know? Haven't experienced that yet...thanks to COVID.
Today, though, I headed to my 3rd "Red Devil" chemo appointment with a totally bald head. I figure if that's normal anywhere...a cancer center is it. The feel good weeks make it so much easier to walk back into that building. Knowing I can get back to feeling normal makes the yucky feeling not as daunting. I still know it's coming, but at least I've gotten to enjoy feeling good for several days first.
Look for another update in a few days. Hoping and praying that #3 goes smoothly...
I spent most of the past several days horizontal.
Round #2 of AC chemo has been much more debilitating, and for much longer than the first round. And even today (6 days post treatment) I'm feeling only at about 40%-50% of normal. So, if my writing feels a little disjointed or not as cohesive as normal...blame it on the chemo brain.
All day Friday & Saturday I felt constantly queasy and had a horrible headache. I had very little appetite, but felt like I needed to eat to combat the queasiness. Plus, I've had an icky taste in my mouth all of the time...kind of a metallic-tasting film. Blech. I had a really hard time drinking all of my big ol' gallon of water and only made it to about 75oz each day. I found that sucking on hard candy helped me get through any vertical job I needed to do (like getting my head shaved or take a shower) without getting super nauseaus.
Since my head was hurting so bad (like a vice squeezing my whole head), I didn't want to listen to music or watch television, so I spent most of my time just laying on the couch, messaging with friends, scrolling on my phone, reading my book, talking to Ben, or falling asleep.
By Sunday, I woke up with my stomach feeling more settled, and I was finally actually hungry again, but my energy levels were still really low. I did manage to move around the house a little more on Sunday, went outside a few times (and revealed my naked head to my neighbors), and had a couple of friends stop by that I was able to stand or sit outside and talk with. But overall, I still spent a good portion of the day sitting or laying on the couch.
Monday, I went for a walk, but found that 4 slow laps (about 1.75 miles) around the park completely wore me out.
I took it very easy the rest of the day, doing some blogging and work at my computer and then eventually just sitting on the couch and reading. I noticed I am not able to multi-task at all. I can do just one thing at a time (slowly), and interruptions or requests to make decisions throw me completely off and overwhelm me. That must be the chemo brain they talked about. Ben said I seemed very disoriented and confused a lot of the day.
I wrote my "Hair Today, Gone Tomorrow" post that afternoon and made the video of him shaving my head -- which was more emotionally draining on me than *actually* having my head shaved. Watching myself go through it was far more emotional than the process itself, when I was mostly just trying not to puke. Lots of tears on Monday as I worked through that -- mostly out of love and appreciation for Ben and his gentleness through that whole process.
Tuesday, I attempted another walk, expecting to be doing much better by then. This time though, I had to stop and rest in the middle of lap 3. That was VERY hard for me mentally. I tend to guage my "okay-ness" based on what I can physically do. After my first round of chemo, I was doing a HIIT workout on Tuesday and felt great. But this time, I couldn't even do a slow 30 minute walk without having to stop and rest.
While I had hoped to send out a newsletter and get back to painting signs this week, on Tuesday it became painfully clear that I was not going to bounce back quite as quickly after each of these subsequent rounds. So, I'm putting that decision on hold another day or two...
I did manage to take a shower, put on real clothes and do a couple of small tasks throughout the day though -- laundry, organizing accessories in my closet, and a walk up to the park with the kids to catch a glimpse of the hospital fly over in salute to health care workers in Birmingham.
An interesting side effect I've noticed is that I am craving RED meat -- hamburger, steak, anything RED. Which was lucky, since Ben smoked a corned beef brisket today. IT WAS AMAZING. I could have eaten the whole pile of sliced meat myself like it was popcorn. I've heard of chemo cravings, and this appears to be mine (at least currently). Over the past few weeks, I've been craving and eating lots of meat, eggs, cheese, greek yogurt, fruits & vegetables, and drinking protein shakes. I have almost zero interest in sweets (which is very unlike me). While my portions are smaller, I've needed to eat every 1-2 hours to keep my stomach settled, so I know I'm eating plenty. But between lessened strength workouts and more inactivity and a much more low-carb diet than I normally eat, I've lost about 4 lbs since chemo started. Every morning that I weigh less than the day before, I get up and eat a huge breakfast sandwich with eggs, sausage and a protein waffle with butter on it. It's not for lack of trying. I'm eating constantly. Just ask Ben.
So, now it's Wednesday, and to be honest, I feel only slightly better than yesterday. I'm still very tired, moving pretty slow, taking lots of breaks and just doing one small task at a time. Instead of going for a walk, I cleaned the bathrooms and have done intermittent exercises like squats & lunges between periods of resting, just to feel like I've used my muscles.
I've been very thankful to have the ability to do nothing if that's what I need to do, a family who is very capable of taking care of all the things around the house, and no real requirement or agenda set for any of these days. That has been an absolute HUGE blessing to me as I get used to allowing myself to just rest and eat, which seem to be my full time job lately...
I'm also trying to work out my new "look", which is definitely taking some getting used to. Pretty sure THIS isn't quite it, but we all got a laugh out of my attempt!
Today was a big day.
I always shed a lot of hair in the shower, but on Wednesday, I noticed a lot more coming out when I washed it. It seemed like the hair losing process was beginning...and while my actual head of hair didn't look so different, by day 17 every time I touched my hair, more would come out.
The trauma and stress of not being able to touch it, wash it, and seeing all of that hair come out, while I was also feeling terrible from round #2 of chemo was just more awful than the thought of shaving it all off.
By Friday night, I resolved that it was time to do it. I told several people I was going to, knowing that would help me have the guts to *actually* do it. We decided to shave it all off on Saturday morning, as soon as I felt up to it. That took some doing...mostly because I felt terrible and couldn't get out of bed. I finally ate enough, found a piece of hard candy to suck on to keep the nausea at bay, and mustered up enough energy to sit on a stool in the bathroom while Ben did the hard work.
He was amazing. He made sure to do it exactly how I wanted, when I was ready, and he was so sweet and calm and kind throughout the whole thing. I know it's just hair, but I had some GOOD hair! And this wasn't a haircut I was excited about or choosing, so I know it was hard for him to have to be the one to run the clippers.
...but he made me feel beautiful and loved even though I felt so sick and sad and scared.
When it was all over, I mostly felt relief.
I didn't look TERRIBLE. I could work with this.
So I put on some earrings and makeup and got ready to show the kids. They knew we were doing it, and knew it was coming, so they were prepared. It definitely caught them off guard and they made some funny faces while they processed my new look. In the end though, they both agreed it looked ok--and I still looked like "me"!
My default "look" will probably be natural and bald -- because right now, that's who I am and what I look like, and I don't want to hide it or pretend it isn't. And since I'll be doing chemo through the fall, I have a long time before it starts really growing back.
But, I like to accessorize far too much to keep it that simple. Don't be surprised to see all kind of varieties of wigs, hats, bandanas, scarves and earrings decorating my clean slate head! I've already started a pretty good collection...
(Believe it or not, that first picture is a wig, not "old me.")
I know I have a lot of hurdles to go over on this journey, but this was a big and scary one for me. I feel like it went well, and I'm ok with this GI Jane, tough-girl look for a while.
Attitude is everything. Life is 10% of what you make it and 90% of how you take it.
Now when will they let me get my first tattoo??? I'm definitely ready now...