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...
Chemo treatment #2 arrived, and my hair has held on. I have noticed a significantly increased amount of shedding and some sensitivity at my scalp, so I was VERY ginger and gentle when I fixed it this morning, and made sure to pull the top back so I would leave it alone all day. The last thing I wanted was for my hair to fall out everywhere while I was getting my chemo treatment. I packed a hat, just in case.
Regret #1 -- my appointment was at 9:45, and since I'm opposed to waking up too early, I didn't have time to get a workout and shower in before my appointment. I knew I wouldn't be able to get much more than a walk in for the next several days, so that was disappointing. Instead I took my time drinking my coffee and working on my bible study.
It was another long wait in the car in the parking (waiting) lot, so I didn't actually go inside for labwork until after 11am. Then I was able to meet with my doctor, where I filled him in on the last two weeks of symptoms. The meeting went well. He seemed as pleased as I've been in how I've reacted so far, and he issued me a warning: "Your hair will probably come out this weekend. And people may treat you differently once it's gone and you "look" sick." I know he's right, but 1) I'm not seeing many people these days, and 2) he doesn't know that I have a pretty thick skin and 3)I'm not afraid of talking about the pink elephant in the room.
The way I see it, if I acknowledge the fact that I'm bald, going through chemo, and I'M not bothered by talking about it...then people ought to be able to interact with me without much problem. So make note -- if you have a question about me or my health or the experience, ask it! If you think I'll be offended, I probably won't be (at least not for long). But also know...I'm probably more interested in what funny COVID memes you've seen this week and what's happening in YOUR life than re-hashing my symptoms (which I'm already thinking about constantly).
Ok...back to the appointment. I felt like an old pro getting all set up at my chair. Extension cord, check. Journal, check. Book to read, check. Headphones, check. Snacks, check. (They let me take my mask off to eat my cheez-its!)
The process is long, but goes by fast with all the messaging and chatting that I did with several friends & family members. And it's completely painless....although looking at this picture now, it's making me feel VERY nauseus.
Ben was there to pick me up around 1:40pm and we headed home. Mostly, I felt great, except for feeling very puffy and a little light-headed. I was glad he was there to drive me home.
When I got home, I had a huge bag of happy treats from my friends from church. They know what I like---accessories!
While I was feeling good, Ben and I went up to the park behind our house to walk a few laps. Seemed like trying to "walk off some toxins" was a good idea. He left after a few laps to go mow the lawn and I kept on, walking a total of about 50 minutes.
The rest of the afternoon, I sat on the back porch, answered a bunch of messages, and read a little of my book. But about 4:00pm, I started feeling pretty awful. Nauseus (I took some more meds for that) and had a headache. After Chemo #1 I had started to feel bad around 6pm (though not this bad) so it seemed to set in earlier since my appointment was a little earlier this week. It definitely hit harder and faster this time though.
I managed to eat a small plate of food around 5:30, but then said goodnight to everyone and headed up to get in bed by 6:30pm. Reading made me nauseous, sitting or standing made me dizzy, noises made my head hurt. So sleep seemed best. I fell asleep from about 7 to 8pm and asked Ben to bring me a little more food so that I could try and get some more into my stomach before I fell asleep for the night.
This may be the slowest and smallest meal I've ever eaten--and I had to ask Ben to cut the chicken into tiny pieces for me so I could eat them more slowly. He's like the BEST nurse ever. And I managed to finish all but one bite.
He hung out with me while I ate (glad to have that chair in our bedroom for moments like this) and by 10pm, I was ready to go back to sleep. Thankfully, I slept well, and only woke up once in the middle of the night to go to the bathroom -- but I could tell my stomach was still feeling like it was seasick on a cruise ship.
When I woke up at 6am, I knew it would be a good idea to eat before I started moving. So I reluctantly woke Ben up and asked him to make me some toast and an egg. Which he did, while barely awake. I was able to eat that well, and had enough energy to get up, get dressed, check on the status of my hair (still shedding, but not enough to shave it yet!), make some coffee, empty the dishwasher, and do my bible study lesson for the day. But by 8:30am, I was totally pooped and now I'm camped out on the couch.
Already I can feel my skin changing over to very dry and sensitive (which it did last time, but then switched back to normal) and my eyes are very dry (which is new this time). And boy am I glad to have a new tube of lip balm for every room of the house! I need it constantly.
So far, it's been significantly harder this time than last time, which worries me about the next couple of days. But I'll take it easy, I have a great support team taking care of me, and I will check back in here with an update and wrap up of how the weekend went early next week.
Honestly, no news has been good news, and there's not much to report. Essentially, with the exception of just a few small things, I've felt completely normal, if not better than normal, since last Tuesday, which has been AWESOME.
As best I can tell, the Neulasta shot didn't affect my bones/joints at all, so that was great, as I've heard that can be really painful. I've had occasional headaches that get better with Tylenol, a very uncomfortable "burned tongue" feeling (days 10-12) that seemed to get better with regular use of Biotene mouthwash, and until about yesterday have felt extremely hungry and needed to eat every 1-2 hours. My best guess is that the gallon of water I'm drinking every day is keeping me from eating everything in the house -- and consequently gaining any weight. Up to now, I've maintained a consistent weight if not lost a pound or two.
Today (day 14), I noticed some extra shedding of my hair in the shower, and I'm afraid I'm living on borrowed time in that category. Most people on dose dense AC chemo lose their hair right about 2 weeks after their first treatment and right near their second.
I've been working out every day (high intensity, only minimal modifications for my weaker arms after an elbow injury this year), sleeping well (other than frequent trips to the bathroom from that gallon of water), eating well (lots of protein), and even taking care of some prep-work for my sign business, in the hopes of getting back to painting signs next week after recovering from this next round of chemo--assuming it goes as well as this one has.
I power washed a load of wood and cut it all down to size, and got those boards pre-painted so they're ready to be turned into custom signs!
And, since I wasn't doing my regular full time *work* I did have plenty of extra time to rest and read and visit with friends on the phone or through video messaging, which has been really fun. I think I'm actually MORE social now than when we aren't in quarantine.
I've adopted a "do what you can in this moment" policy, so instead of planning my whole week, I'm making lists of things I'd like to do or get done so when I feel well, which thankfully has been all of the past week, I can hack away at that list. Honestly, COVID quarantine (and gorgeous weather) have helped make that much easier on me.
Today, I'm cleaning the house and getting ready for a long weekend of laying low, watching TV, sleeping & reading books while I recover from round two. I've been told the fatigue is cumulative, so I expect to feel a little rougher for a little longer this round...but we'll just see how it goes.
When you hear "chemo" you think you'll be barfing and bed-ridden and bald and in constant pain immediately after the treatment. So when I woke up feeling mostly fine on Friday, it was both a pleasant suprise and I felt a little sheepish--Aren't I supposed to feel awful? Maybe it'll hit in another day or two...or maybe all the steroids and anti-nausea meds they gave me are working really really well.
Overall though, the weekend was very tolerable. I definitely felt "off" and had several notable symptoms, but nothing horrific, nothing so miserable I couldn't function, and mostly, I felt just a little run down. I spent most of my time noting how I felt, wondering how I would feel in a few hours or days, and waiting to see how my body responded...and luckily, so far anyhow, I've been pleasantly relieved.
I think because we (Ben played a BIG role in making it possible) intentionally cleared myself of all responsibilities, since I had no idea how I would respond or feel, I was able to just do what I was capable of in each moment based on how I currently felt--true 100% in-the-moment living.
I typically NEVER operate that way in my regular life -- my set speed is GO with a list of things to do a mile long that MUST be completed by the end of the day. So, releasing myself of having to "do" anything or expect anything of myself really made me appreciate each thing I *was* able to do all weekend.
People have told me over and over again that I'm "strong" and "inspiring" and can "fight" this. I don't quite know how to respond to that. I didn't choose this or decide to be "brave" and tackle cancer. I couldn't "pass" on dealing with it--or I absolutely would have! I certainly don't have any control over how my body responds to the drugs or whether the cancer spreads or shrinks.
I don't really have any choice but to just let it happen and see what God does with it. I don't know where it will all end up or what my story will look like. It's quite possible this could be the most boring cancer story EVER. But in any case, I'm committed to recording the experience, processing it through journaling, and giving anyone who is interested a behind-the-scenes look at what this *can* look like (because everyone's experience is completely different).
The Lord will fight for you; you need only to be still.
- Exodus 14:14
As someone who likes to be in control, capable, dependable, doesn't want to be seen as weak or in need, it's pretty clear THIS is the bigger picture lesson I'm going to need to learn through all of this.
So now, if you've made it this far...here's the less philosophical and more physical, chronological rundown of what days 3 through 6 have looked like for me after my first chemo treatment:
The short version of symptoms I've noticed so far are these:
- flushed face & chest
- very dry skin (when normally mine is more oily)
- slight queasiness, needing to eat every 2 hours or so
- pressure headache between my eyes
So, though it wasn't a horrific miserable weekend, of course, life was not completely "normal" either. For instance, Ben used the main bathroom for the weekend instead of the one in our bedroom, so he could stay far away from any possible toxins released from my bodily fluids. Every time I went to the bathroom (which is about 35 times a day when you're drinking a gallon of water) it was a whole process -- pee, put the seat down, flush, wash hands, put lotion on hands while I wait for the tank to fill, flush again. We had instructions to wash towels or sweaty clothes or sheets in hot water after each use. Whether it's truly necessary or overkill, I don't know, but the instructions were specific enough to scare us into doing it, so Ben's face and hands didn't melt off. (Although, I'm not sure why I'm not melting away if my sweat or tears could hurt him as much as they say?)
If 100% "normal" energy for me is making it through a 6am to 10pm day, including a high intensity workout, full day of work and family activities in the evening, then I'd put the last several days at the following energy levels:
Friday - 70%
Saturday - 30%
Sunday - 50%
Monday - 65%
Tuesday - 90%
I was able to eat pretty much anything I wanted, although I was much more interested in meat, eggs, cheese & savory foods than sweet things. I slept pretty well each night (other than frequent bathroom trips). And once I found some good moisturizing lotion to deal with my skin issues and some coffee & some ducosate sodium to deal with my tummy troubles, I was doing ok.
FRIDAY (day 2)
Around 6pm, just after we finished dinner, my arm started beeping. Truly. Several beeps from my Neulasta shot was the warning that it was about to start dispensing the medicine.
For the next 45 minutes or so, I could hear a clicking sound coming out of it, and feel a teeny tiny pinch in my arm.
Then at 8pm, I was allowed to peel it off. What a wild way to get your medicine! But it worked pretty well, and sure beat going to the hospital again for a shot. My main concern about the Neulasta shot is the bone and joint pain that some people experience. After dealing with that kind of pain during my Graves Disease diagnosis, I know how miserable that can make me. But the initial shot didn't seem to do anything to me that I could notice. So far so good, on that front (even today, 4 days later).
SATURDAY (day 3)
I'd heard that day 3 is often when all the steroids wear off and the effects and fatigue of the chemo treatment hit. So when I woke up on Saturday feeling kind of nauseous, with a headache and vert low energy, I wasn't suprised.
I took 2 of the anti-nausea tablets right off the bat. If I've heard *anything* it's to stay ahead of the nausea. Then I ate breakfast and slowly moved about the morning. I had to stop in the middle of making coffee and emptying the dishwasher though (and Ben finished that task for me). After just a little bit of food and activity, I gave up and headed back to bed at 10:30am and just laid there for a while listening to a podcast with my eyes closed.
Ben brought me a cheese stick to eat, which seemed to give me enough energy to head back downstairs for a little while, where I was able to make and eat lunch. And I had just enough energy left over to put some Color Street nail strips on myself & Ayla (thanks to a friend who had dropped them off for us that morning). Definitely a little "happy" in my day!
But my energy was definitely super-low and after a little while at my computer, when Ben took the kids out to ride bikes, I ended up crashing back in bed. I tried to watch a show, but fell asleep. I was just completely exhausted.
When I woke up a couple of hours later I felt slightly better, but spent the majority of the evening just sitting on the porch wrapped in a blanket. That was the big event for the day.
By Saturday night the skin on my face and chest was so dry it felt like I'd been sunburned. I think because I had been washing my face with my normal-to-oily Cetaphil wash and using the salicylic acid acne medicine I was used to using, it was getting extra dried out. So, I resorted to the thick stuff--Eucerin on my face. But it felt SO GOOD. I just hoped I didn't wake up looking like a pepperoni pizza.
And then I was done. Day over. I put in earplugs, my unicorn sleep mask (that my friends got me right after I was diagnosed) and told Ben to leave the lights on and do whatever he needed to do...and I was out.
SUNDAY (day 4)
I fully expected to feel terrible again today, but I actually woke up feeling ok, had slept pretty well, and my face didn't feel like sandpaper (thank you Eucerin). I did have a pretty intense headache though and it was pouring down rain outside.
As soon as I was awake, I made my way downstairs so I could get some food in me right away. I've found that if I don't eat every couple of hours, I start feeling queasy--and once I'm awake, I need to eat pretty quickly before it sets in. But I had enough energy to do all the normal morning chores (make coffee, feed the cats, empty the dishwasher, make breakfast, etc.
But then, since it was pouring down rain, a Sunday morning, and everyone else was asleep, I camped out on the couch and did some reading. Eventually Ben, the kids & cats all joined me--and the rain stopped. I think this was a good example of how I was able to practice allowing myself to just sit still, and not try to "accomplish" anything--and it turned out I enjoyed it.
It's my intent to do *at least* some kind of exercise any day that I feel up to it (and eventually if I can get back to my normal HIIT workouts, that would be FANTASTIC...but we'll see). Since I'm still healing from my port surgery and high intensity and weights aren't the best idea, I decided while it was dry to go for a walk up at the park behind our house.
While we're on the subject -- here's how my port looks 9 days later -- itchy and weird still, but not painful.
The walk was *really* nice. With COVID keeping everyone home, our park is like our own private walking track, and since I wouldn't be allowed to go to the gym, it's the next best thing. I ended up walking about 2 miles (slowly), but SO enjoyed the cool fresh air and being able to move my body for a while.
The rest of the day was pretty low-key, but I felt really good and was able to do some laundry and cleaning, until about 5pm, when my headache came back while we were watching our church's worship service. After a little dinner though, I was back to feeling good.
I had truly expected to be out of commission completely for at least the 3rd to 5th day after chemo, so I was really surprised when I felt as good as I did all day on Sunday. Maybe all the water I'm drinking is helping....
MONDAY (day 5)
Monday I woke up feeling even better than Sunday. So maybe the worst of this round is over? And it wasn't so bad. I did wake up with a headache, but tylenol seemed to help that. I tried to start the day with some work at my desk, catching up on emails and little tasks that I needed to do. Even a Monday on quarantine with no "work" to do seemed to have an awful lot going on!
My sister-in-law Janel came by with some grab-n-go lunches for the kids, and while she was here, we went up to the park to walk together and ended up doing 2 1/2 miles. She was very kind and wore a mask the entire time to keep me from getting any germs. I tried to wear mine, but couldn't breathe, so we decided as long as she had one on, we were ok. Years ago, we used to run together several days a week, and it's been a long time since we've gotten to do that!
I cleaned both bathrooms (with some rest inbetween) helped Paxton with a video call with his cubing friends, and spent a lot of time hanging out on the back patio, because the weather was perfect.
And around 2pm, my friend Fran came by with several books for me to read. I set up a 6 feet away chair for her and asked her to stay and chat...and we had the best time visiting!
Our friend Melissa brought us an amazing "breakfast-for-dinner" treat, which we ate outside and then I spent the rest of the evening working on blogging, showering and watching Tiger King.
The only other "symptom" I noticed today was a spot on my inner cheek in my mouth that started feeling like a sore--kind of like I had bitten the inside of my cheek. It wasn't painful, but I could feel it growing throughout the afternoon. Hoping that doesn't turn into anything...
TUESDAY (day 6)
Today, I woke up feeling *very* normal. So normal, I was able to do a Burn workout, shower, get dressed in REAL clothes, put on makeup, and do all my regular things.
I won't count my chickens before they're hatched, because every day is a new symptom and adventure, and I've heard this is a cumulative process that gets worse and harder with each treatment. But round 1 wasn't too bad at all.
Also, you may have noticed, I'm not fixing my hair. I think I'm subconsiously trying to detach myself from it before it detaches from my head. I seem to think if I view it as a hassle or a burden then I won't miss it so much. And I'm trying to get used to seeing my head without a mane of hair around it.
I'll let you know how that works for me in about a week...