New Year, No Chemo

I’m still trying to figure out this post-chemo lifestyle. I’ve recaptured many aspects of my pre-cancer life, but there’s also a sense of blissful ignorance that will never return.

As we approached October, my brain started to go on high alert, as that was the month I was diagnosed. I kept thinking about all of the anniversaries from October through December: diagnostic scans, blood draws, surgery… I had to remind myself to dwell in gratitude not trauma. Each anniversary I considered writing a post, but I couldn’t bring myself to do it. I think I figured if I allowed myself to reflect too much it would drag me down.

It’s the new year, so I am forcing myself to do some reflection and updating. I have had quite a few areas of re-entry into “normal” life. I’ll share them in a list.

1. Food! Glorious food! I finally have my taste back and my tongue looks relatively normal for someone who has always had a geographic tongue. My favorites are starting to taste like I remember them. I’m quite grateful for that. But tbh, there is that part of me that wishes I didn’t like food as much again, bc I fall into our society’s lies of “losing weight is always good.” Good thing I know that putting myself on a liquid diet is not actually a healthy choice.

2. Driving Miss Colettey. I say Colettey because my little dude does not have quite the social life that Colette does. In late October, I ventured out driving despite my neuropathy. I can feel things enough to drive, but movement and pressure does intensify the burning and tingling. I have resumed about 90% my previous driving responsibilities

3. Appointments. No, I’m not appointing a federal cabinet or judges, I’m making and taking myself and the kids to all the appointments now. Eye doctor, Loeys-Dietz monitoring scans, cardiologist, oncology scans and follow ups, blood draws, dentist, orthodontist, primary doc, acupuncture, physical therapy. All the things.

4. Neuropathy. The progress: I am driving and opening cans and bottles and most packaging on my own now. That’s the only mark of progress I can really say. I’m not sure if my symptoms have improved or if I’ve just learned how to do these things without full feeling in my fingertips and feet. My hands, feet, fingers, and toes have a constant baseline of a tingling, burning, and numbness. Those sensations intensify with use. For example, my fingertips are on fire after typing this far into the update. The best way to describe the feeling is when your hand or foot falls asleep, and it’s waking up. That tingling that kind of feels grainy and you want to stomp your foot or slam your hands to get them to wake up…that’s the constant baseline. I have been trying electric stimulation and laser therapy, but I can’t say I’ve seen much improvement. I tried gabapentin, but my body was not a fan. At this point, I do some light massage and take Tylenol to help me fall asleep. We shall see if I see any improvement. But I am learning to live with it. I’ll take neuropathy over cancer.

5. Travel. I had my 3ish month post-chemo follow-up on November 5th to make sure my immune system was back up to snuff for travel. On November 16th, the LaCour Four took off to Costa Rica. I chose Costa Rica as our first post-chemo travel destination, because we had been there as a family in 2016 and it was one of my favorite vacations. This time did not disappoint. I’ll link to that report here…when I write it!

6. Surveillance. I’m trying to figure out how to not feel paralyzed between follow up appointments and scans. I tend to want to hibernate and hide when I am anticipating something I don’t have much control over or information about. Between currently getting baseline scans to see if my vascular system is showing any signs of Loeys-Dietz effects and oncology follow-ups with bloodwork every 3mos and follow-ups with scans and bloodwork every 6mos, my psyche wants me to freeze until I get more information. It is real work for me to lean into living the daily routine and into following through with passion projects. The instinct to numb out, space out, or to distract myself with the mundane is strong.

7. Carpe Diem. There is a part of me that feels like I should be on the other side of this living my best life. Not sweating the little things, etc… I can pressure myself into being a bit more daring by saying, “I made it through chemo. I can do this,” whatever “this” may be. But that also doesn’t feel authentic to how I feel on this side of things. I still feel pretty beaten down by the past year. Yes, I survived. I went through a lot. People say they admire my strength or they are proud of me or whatever the thing is to say to someone who is done with chemo, hopefully forever. Internally though, I don’t have some sort of “Damn girl, you did that,” monologue. I have a “Wow, that was worse than I realized it was while I was going through it. I’m glad that’s over. For now. Forever. Hopefully. Man, I’m exhausted from all of that. I’m likely traumatized, and I have no idea how to really process it,” monologue. So maybe I’ll get to that “carpe diem” phase or that “empowered survivor” phase, but I’d say for now it’s more of a “get yourself out of bed and do something today” phase.

So that’s where I am. I have one more MRA to get full results and a follow-up with my cardiologist to discuss what treatment and monitoring for Loeys-Dietz symptoms will be. I have my oncology follow up with bloodwork and CTs on February 6th. I guess that means I better get those appointments scheduled…

Onward.

In the spirit of contuing to avoid, I wrote this last Wednesday. It all still pertains to the truth. I keep putting off posting an update...

In the spirit of contuing to avoid, I wrote this last Wednesday. It all still pertains to the truth.

I keep putting off posting an update because I want to post that now that chemo is over all is well. While I am thrilled to be no evidence of disease, I’m struggling with what this immediate post-chemo phase is. 

When I think back to infusion and pump days, my stomach and body go into knots. I didn’t fully realize how bad I felt on those days. That grin and bear it attitude didn’t allow for much dwelling on that part. 

The main complaints that I had during treatment continue to be struggles. My taste is still not back enough to enjoy food. It’s back enough to eat food and to not immediately feel disgusted by the taste. My tongue still looks weird. A smooth tongue it is not. My neuropathy is frustratingly disabling. I can’t open packages or containers bc my fingers are always buzzing and numb. I can’t put on jewelry bc you need to be able to have the dexterity and feeling to open and close clasps or to put earrings in. I slept in a necklace the other night, but woke up feeling like I was being strangled. I wasn’t. My necklace was far from doing so. A simple fix would have been to just take the necklace off, but I couldn’t. So I did a lot of deep breathing, held onto the necklace and eventually fell back asleep. But there is something scary about feeling anxious, knowing what would fix it, but not being able to do that thing without help. Also, I can’t walk very far because ny legs give out from trying to navigate walking when you can barely feel your feet and legs. I haven’t driven yet because I don’t fully trust my post-chemo body yet. The idea of driving when I can barely feel my hands and feet seems like a bad idea. It’s definitely going to take baby steps. Finally the fatigue. I don’t have full on crash days, unless I expend a lot of energy in a highly stimulating environment: see Hamilton and Disneyland. However, I haven’t made it through a day without a nap. I get to the point where I can’t keep my eyes open. On the flip side, I have trouble falling asleep at night because that seems to be the time when my neuropathy likes to tingle and burn the most.

So while I’m not getting biweekly infusions of chemotherapy anymore, post-chemo recovery is a thing. Those drugs zapped the cancers, and they did a number on my body. My recent blood test still have me severely immunocompromised and my platelets are quite low. I have bruises all over my legs, some in the shape of paw prints. A pug using your legs as a springboard from which to jump does not go well with low platelets and blood thinners. In addition to paw prints, I just get seemingly random bruises from a slight bump into a chair, bed, wall, or other fixed features. Why am I bumping into these things? See neuropathy. But also just general clumsiness. Speaking of clumsiness…for you moms out there who were pregnant, remember the dropsies? When things seemed to just randomly fall out of your hands? Yeah, that’s definitely happening. It’s a good thing I have a good case on my phone! 

As hard as this phase is physically and mentally, don’t get me wrong. I have ventured out into the world a few times, and I have had the energy to interact more with the kids. Our family trip to the Pantages to see Hamilton and afterwards to stage door to get signatures was amazing. I had my moments of losing balance and not enjoying dinner, but putting those aside it was a special time for us. 

We had also planned a Disneyland visit on 9/12 when my chemotherapy was supposed to end in July, I decided to keep the reservation, and we went. However I had learned from our Hamilton excursion that I needed to put some things in place to enjoy our time. I got a hotel room so I could go and take a nap while the rest of our crew stayed in the park, and I also rented a mobility scooter. That was definitely a hard step psychologically to accept that I needed that aid, but I also knew that it wasn’t an option if I wanted to be able to enjoy any of my time there with the family. We had a great time. We all “Disney bounded” upon Colette’s usual request. We did the original Disney crew: Mickey, Minnie, Donald, Daisy, Goofy, Clarabell, and Pete. I picked Pete bc what beats overalls for comfort? One of the highlights of the day for me was getting to meet Pete. He was flabbergasted to see how similar we looked together :) 

it hasn’t been all bad, but I have struggled a lot with posting this update. I think there might be a hesitation to share this part of the journey bc once chemo is over, you want to put it all behind you. A part of your life nicely compartmentalized that began with diagnosis and ended with last treatment. I knew it wouldn’t be exactly that because of the thorough monitoring for the next 5 years, but this phase is a bit more than that. My hope is that I don’t have to deal with the after effects of chemo for very long, but I do know the memories and trauma of going through cancer treatment will always be a memory my body keeps. I’m just not at the point of celebrating that I got through it yet, because I don’t feel like I’m through it. 

Thus I will continue to press onward.

P.S. Check my instagram or FB for photos of Disneyland and a video of my awesome encounter with Pete there.

Rang my bell. More details when I’m not about to pass out from exhaustion.

Rang my bell. More details when I’m not about to pass out from exhaustion.

Cycle 11, Day 14– Almost There

I think I’ve been avoiding posting bc I want to just push through the end. I have one more infusion. Wednesday will be the last infusion in the center, then I bring my pump home for 46hrs(this is the part I dread the most) and on Friday I go back to the infusion center to get disconnected. The dread for going back tomorrow and feeling awful for the next 7 days is pretty intense, but it definitely helps to know that this will be the last one. I don’t think it will be real to me until that pump is out. This also doesn’t mean the end of my cancer journey. I likely have several months for my body to recover from fatigue, taste change, and peripheral neuropathy. Also, there are the blood tests every three months, scans every six months, and annual colonoscopy for the next 5 years. So I suppose it will be hard for me, as someone who is cautious to celebrate things that are uncertain, to consider myself cancer-free. I do appreciate the alternative phrasing of No Evidence of Disease, or NED, though. That seems a lot more realistic to me. Things I will celebrate: my first meal that I can taste fully and having the feeling back in my hands and feet. I’ll let you know when those happen.

What have I been doing for the past weeks?

1. Going to the ER and hospital on my birthday for a UTI that put me at risk for sepsis. All is well now after a night in the hospital and some antibiotics.

2. Getting a diagnosis for Colette related to the gene found in hers and my genetic testing. She is officially diagnosed with Loeys-Dietz Syndrome Type 2 with a mild presentation. This means she is at a much lower risk for aortic dissection and all the complications that can come with this diagnosis. Her aortic root and aortic branches look normal, but we will continue to monitor with regular MRAs and echocardiograms. She also is diagnosed with POTS. She is currently in physical therapy for her joint and muscle pain that she has been experiencing. It is related to her LDS and POTS, but also her muscles can’t keep up with her growth rate, so that is contributing as well. She is 13yrs old and 5’7”.

3. Making lots of doctor’s appointments for myself and Colette.

4. Getting the kids ready for back to school including 504 meetings and lesson planning.

5. Eating a bit more food. I haven’t had a shake since the end of July.

6. Dealing with peripheral neuropathy. Slathering myself in lotion and getting amazing foot massages from our caregiver/nanny/housekeeper. Just call her Mary Poppins!

7. Napping.

8. Playing lots of solitaire and word games.

9. Napping

10. And most recently grieving the loss of My brother’s dog,v Petey. I had a special connection with him bc I fostered him until we found the right fit. And my brother ended up being the perfect dog dad. He saw him through many milestones. I will miss my Petey Pete snuggles when I go to Atlanta next. And I’m sure that Winston and Nelson were there to greet him at the rainbow bridge, and they are all enjoying a romp in the fields and a snooze in angels’ laps.

Cycle 10, Day 2—Back on Pole

Yes an F1 reference, but I’m not starting any races anytime soon. Unless it’s to the bathroom at the infusion center as I push my IV pole down the hall! So the 5shots to boost my neutrophils from 0.4 got me up to 2.1. I really had been hoping for higher, bc the range goes up to 11 and sometimes they push you past for buffer. Anyway, 5shots of a higher dose of this medicine only getting me to 2.1 indicates to me the importance to continue this protocol for the last 2 cycles.

That’s right, I said it. Last TWO cycles. I feel encouraged by this, finally. I’ve been fully dreading the last few cycles, bc of my liquid only diet continuing for so long. However this chemo delay allowing me to be able to eat solid food for about 7 days was much appreciated. I feel more capable of doing liquid diet for the remainder of chemo, if needed.

Additionally, I do believe not only the break, but my oral hygiene routine has helped with the return of some taste ability that I might not get to the liquid only diet again. So I say for your chemo friends who struggle with this my routine was: brush teeth, scrape tongue until the scraper is only showing clear mucus/spit on it, oncology mouthwash available on Amazon (white bottle with orange and blue label). I do this 3-4 times/day routinely and when my mouth is just feeling the build up. I’d start this routine at the beginning of chemo if I had to do it again, but please no thank you! The recommended saltwater wash 4x/day wasn’t enough for me.

Also on the break I had a bit more energy despite being neutropenic, and it seem that some of my hair grew back. The drawbacks about extending the timeline of treatment are obvious. Some of the lesser-known drawbacks for me with delay/neutrophil treatment are that my peripheral neuropathy gets worse meaning lots of burning in my feet, and the return of some bone pain. The docs say to take Claritin and Tylenol while on this medicine to prevent bone pain, however, I was doing it wrong. I took Claritin every morning as I do every morning on or off this med, but I waited to take Tylenol until the bone pain started. I was corrected to take both at the same time, bc these medicines work in tandem to prevent the bone pain. I only started this yesterday, so I’ll know if the theory/data plays out.

One more note of concern. Because I had been so fatigued, I wasn’t able to take walks to keep up my muscle tone. I did leg lifts and stretching in bed, but between being bed/recliner bound for so long and being on the liquid diet for about 8 weeks, I seem to have lost some muscle mass. My knees have been giving out sporadically as I walk or stand for too long. The good news is the break and being less fatigued helped me realize this. I will be asking for physical therapy referral for when I finish my last cycle to tone back up.

Alas, this was a long update. Congratulations for reading this far!

Onward!

Cycle 9, Day 14—My Neutrophils aren’t Neutrophilling

Well 3 shots of Zarxio are not enough to get my neutrophil levels up enough for chemo tomorrow. So, we are delayed again. Here’s the plan: up the dose of Zarxio, get shots tomorrow(assuming insurance approves), Thursday, and Friday, bloodwork Monday, hopefully chemo next Wednesday. Beyond that: Zarxio shots for 5 days at the higher dose post-chemo. At this point that will mean shots Thursday, Friday, Monday, Tuesday, Wednesday. I had feared that it would be Mon-Fri which would make any visits to the desert for the next 7 weeks impossible, but I could potentially go Weds-Tues when the kids aren’t on campus. All this is the assumption that I will stay with infusions on Wednesdays. Unfortunately, I remain neutropenic (level was 0.4), so I have to continue to be careful with my exposure to bad germs. Three more cycles to go, so I should finish at the end of August.

The bright sides: I will not have an infusion on my birthday week assuming we continue on this schedule. Also, with my taste back to a decent level ( I could mostly enjoy my favorite cobb salad tonight), I will be bingeing my favorite foods for the next week. I even had a milkshake today. I tried a cheeseburger, but it wasn’t cheeseburgering for me ;)

Alas, delayed, but some upsides.

Onward.

Cycle 9, Day 13–Food, Glorious Food!

Y’all, I’ve eaten food and tasted for 3 days. I was feeling extra hungry on Friday, so I had some cheese and crackers and some m&ms. The cheese with crackers kind of tasted good, and the m&ms were good but not fully there with the taste. Then on Saturday, the doors opened. We went to the Hollywood bowl, and I decided to try some things. The fried chicken didn’t work for me, but the Brie, prosciutto, and cucumbers tasted good. Trust me, I took advantage because I have no idea how long this will last. Sunday I had more Brie and crackers and a slice of salami. Salami wasn’t quite there yet. I couldn’t enjoy the pasta bake that Jonathan made, but I could enjoy a small bit of salad. Monday was a big one. I had sourdough bread with butter. Later I had some starbursts and Andes chocolate. For dinner, the family ordered Mexican food, and I had a shrimp taco that I could mostly taste. But the biggest deal is I had ice cream! I warmed up a brownie bite and put a small scoop of ice cream on top, and I could eat it and taste it! Yummy. You can bet I made a second round, bc I still don’t know how long this will last. Once it becomes more consistent, I’ll have some moderation.

That 4-week break and the neutrophils were what my body needed. I’ve had a bit more energy, some of my hair is growing back, and now I can taste things. Here’s to hoping the next 3 cycles don’t drag me down again.

Wednesday is cycle 10. I’m thinking I might go back to not being able to eat for a few days, but maybe I’ll get to return to solid food for a few days before cycle 11. Here’s to hoping!

Onward.

Cycle 9, Day 8–Back in the Saddle Again

It’s amazing how quickly one forgets. I had a gut feeling of what returning to chemo would feel like. My body remembered, but my brain did not. My taste is worse again, and my tongue burns a bit. I had actually forgotten about First Bite/Sip until well, it bit me. I knew my fatigue was better after 4 weeks off chemo, but woof, I hadn’t realized it was as good as it was. Chemo just sucks.

I was able to get fluids on my pump disconnect day, so that helped. However, I’m not doing a great job anymore at forcing fluids. It was easier on the last 2 weeks, but it’s hard again. Mostly it’s a matter of remembering. I mean the taste and texture of all liquids are an obstacle, but I feel like I was able to push past that in Cylcle 7 and 8. So, I’ve just gotta pay more attention to it.

I’m getting neutrophil shots Monday-Wednesday this week. I had one this morning, and it knocked me out. Thankfully the bone pain is minimal thus far. Hopefully my neutrophils increase a bit more, but thankfully they are still above the threshold. Shot tomorrow morning, shot Wednesday afternoon after my check in with my oncologist, monday labs, cycle 10 next Wednesday with a lot of non-cancer stuff thrown in there.

Inward.

Cycle 8, Day 29–Chemo Dread

So, this 4 week break from my last infusion has shown me that I will eventually feel more like myself post-chemo. Taste didn’t come back fully, but I have had some bites of things that have been tolerable. My hair, well, I’m not sure what post-chemo hair will look like… Fatigue, better, I think bc my red blood cells, hemoglobin, heamtocrit came up to more normal levels over that past few weeks. It’s amazing what chemo does to the body, and that the body can recover.

I am NOT looking forward to this infusion. Yes I’m glad to get back on the regimen so I can finish out these last 4 infusions, however, knowing how I am going to feel again is rough. I am not excited about it, a little depressed that I have to start back again, and hoping that in Sept/oct my scans come back clear. Because I’d really like to not ever do this again…

Alas. The infusions return. Cycle 9 starts tomorrow, which puts me to the last 3.

Onward.

Cycle 8, Day 21-Neutropenia Continues

Well, no luck on my neutrophils. They actually went down :/ So I get to have a shot today, tomorrow, and Friday. Then I go for bloodwork on Monday, and chemo infusion hopefully on Wednesday. The temptation to say, “okay, I got 8 cycles out of 12, let’s be done” is strong. The delays in treatment are quite frustrating for me, because it delays the day I will be able to taste food again!

So here we go, more shots, more blood draws, more waiting, more nutritional drinks.

Onward

Cycle 8, Day 19- Neutropenia take 2

So my blood test results finally came back after I got a second round. The most recent ones have me at 0.5 neutrophils when I’m supposed to be at 1 and preferably higher. The current plan is that I got one injection for neutrophils Friday, and I will get a second one on Monday, after which I will head to labcorp to see if the first shot got me high enough for infusion on Wednesday. I am hopeful that it will, bc I went from 0.1 to 5 within 12hrs last time. As much as Wednesdays suck for infusion days, I really don’t want to miss infusion next week. I guess this is practice for seeing how long off of chemo it will take for me to have some recovery.

Taste is still gone, but I keep trying bites of different things that might be tolerable. So far, it’s my old reliable Granny Smith apple with peanut butter. I’m still doing 2 nutritional “shakes” a day, still no cold.

I got in trouble, kind of, Friday about my fluid intake, especially concerning my neutropenia injection and avoiding the hospital. So the plan is to have me power through some fluid intake in exchange for going to the hospital. So, yay….The good news is I calculated how much I’m actually taking in, and I’m not too far off. It could be as little as 2 8oz drinks/day to add in.

My fingers and toes have been burning more lately, but it doesn’t interfere with functioning. It’s more that I need to use soothing cream and just kind of rub my fingers together. I’ll have to start looking more into chemo-induced peripheral neuropathy. It’s definitely more consistent than previous cycles, and I’d like to avoid having it more than a few months past chemo. But, I’m still at grade 1-2, and I don’t feel much progression in feeling but progression in duration.

Fatigue is still probably the most significant side effect. I definitely have to have at least 1 long nap per day. Getting up to do tasks or just walk to the bathroom can be exhausting and my heart rate still jumps to a point that you would think I’m running a marathon. I am not running marathons. I keep seeing things that say exercise is good during chemo, but it’s pretty hard to feel like I can get that in. I do a lot of stretching my legs in bed, but I’m not sure that equates to exercise. I’m thinking maybe some ankle and wrist weights will inspire some exercises that I can do from the bed or my recliner. We shall see!!

My poor hair/scalp is not thriving. I definitely have some very thin spots on my head. Trying to wear more hats/scarves to protect it. I’d say it makes me look like I’m going through something, which I am. But there’s a part of me that doesn’t want everyone I pass by to be wondering. Maybe if I get a head covering that says, “Yes I’m in chemo for colon cancer” would make me feel better ;)

So that’s the scoop for now. Hoping for chemo infusion on Wednesday…in that make me feel bad so I can feel better kind of way.

Onward.

Cycle 8, Day 15–Waiting to Update

So, I had been waiting to write an update since Sunday. We spent the week in the desert which was so wonderful. I didn’t go anywhere, but it was so nice to just stretch out and breathe easy ish out there. We had planned to go out for 4th of July, but that’s where the waiting comes in….

I had my usual bloodwork done on Friday, as is routine before infusion. Usually I get my results within 24-48hrs. Not this time. It’s Tuesday evening now after my infusion appt at 9:10am that I didn’t get to go to bc the lab messed up and took too long and still hasn’t sent results. We called and tried to get them to process in time, but no luck. So now I am pushed out again…until Monday. This means an extra week of shakes, no 4th desert trip, and my chemo won’t end until 8/12.

I had been slightly excited that my chemo would be done by my birthday, but at this point I know I won’t be feeling good for my bday, bc I’ll only be 7 days out from infusion. Pretty disappointing.

So yeah, that’s the update. It’s not a good one, but it is what it is. At least I’m not in the hospital this time…

Onward.

Cycle 8, Day 2

Still flushing and chemo tongue. It’s gross looking, sorry. I’ve slept today, hopefully I’ll sleep tonight. Tomorrow is pump disconnect day, and I am supposed to get a little on body injection device for my neutropenia. I messaged my doc today to ask about going to the desert this next week, but she said she recommends against it bc my immunity is low and legionnaires disease happens in warm water. I replied with an explanation that it is our own home. So I’m hoping for a more positive response. I could really use the rest and stress relief of being in the desert. I don’t really go anywhere, so I don’t feel exposed to germs… so I might just go.

Onward.

Cycle 7, Day 19– One for the Books

Well, it’s been an eventful cycle.

• Neutropenia 0.1 when it was supposed to be 1.0

• Chemo infusion delaying for a week

• Jonathan arguing with insurance for 4 days to get the injection to help with neutropenia

• Getting the injection

• The injection causing bone pain and slight fever

• Dehydration causing tachycardia

• Getting an ambulance ride at 1am to hospital

• Leaving the kids alone until 7am, Colette stayed awake for 2hrs, William went straight to back to sleep.

• Staying up all night through work ups and tests, being pumped full of fluids and antibiotics

• Returning home at 10am

• Jonathan feeling a tickle in his throat, so isolation from each other for 2 days

• Colette throwing up on her way to her friends’ 8th grade graduation likely bc of all the stress of saying goodbye to friends and me being in the ER

• Colette feeling better after eating protein

• Crashing and sleeping for most of 2 days

• Colette hosting a movie night for her friends while Jonathan covers my usual mom duties for this

• Exciting F1 race

• Double DNF for Ferrari

• Happy to see Lando in 2nd, sad to see Alex Albon taken out

Feeling a bit better today. Food still is yucky, so I’m on a 3 nutritional drink/day routine with bites of solid food being bonus. 10 more weeks at minimum on a liquid diet. We’ll see what that does for me. I’m going to request hydration for my pump disconnect days or the day after. Those are my worst days for hydration, and the fluids they give me seem to last a few days. This is quite the journey.

Onward

Cycle 7 day 14–Infusion Delay

Tomorrow should be an infusion day, however it has been delayed until I can produce more neutrophils. A lot of my bloodwork took a dive this round. The one they get most concerned about is neutrophils. Low neutrophils is called neutropenia. This means I am highly susceptible to any kind of illness and bc my body does not have the tools to fight illness, I could go septic very quickly. Sepsis is obviously not something to play with. My doctor has asked insurance to approve an injection that would help boost my neutrophils, so I’m waiting on that. My level is 0.1 when ideally it should be above 1.0 to continue treatment. So…yeah…I’m hoping for that injection. My hemoglobin took a plunge as well. I was sticking at 10.3 but dropped to 9.8. All the other red blood cell, white blood cell levels are out of whack as well, but those 2 are the most impactful on how I feel physically, which is fatigued. My platelets took a deep dive on my Friday bloodwork but by today they had recovered, so I’m kind of hoping I see a similar trend by this Friday with my neutrophils.

If there was a way to manifest neutrophils in my body, I’d be working on it. Alas, there is not. So I’m asking for your vibes, thoughts, and prayers that I do not get sick this week, and that my neutrophils increase abundantly.

I have very mixed feelings about this delay. On the one hand, I am happy to not be getting the smack down tomorrow. I am hopeful that maybe I’ll feel a bit better as the week goes on…maybe cold sensitivity will subside. Maybe I’ll get a little taste back. I mean those are fantasies, maybe possibilities but not probabilities. On the other hand, all of the studies are done at specific dosages and regimens to come up with treatment efficacy, so the idea of not sticking to the exact recommended regimen is a bit scary. However, I know that delay and potential dosage decrease at this stage in the game is somewhat common and should have little effect on overall efficacy. Also, I’d rather be dealing with low probability of efficacy change than the risk of sepsis. So as I said mixed feelings. Anxiety and overthinking peek their heads in, but I remind them that I am okay and we take this day by day.

I was considering fleeing to our desert home for the rest of the week to stay away from my germy kiddos, but I’m not sure I want to be away from my home hospital and cancer center in my current vulnerable state. We shall see. I definitely love being there and feeling that release and relief, but this may not be the week.

Onward I go.

Chemo Hair, Don’t Care

Well, still losing hair. I’m unsure if I should go shorter. I think next time my scalp feels super tender, I might take some length off. I read something that before losing hair some people get a very tender scalp. Hi, that’s me! It comes and goes, so I’m thinking that’s the reason why it gets so tender, a wave of hair loss is coming. I definitely don’t follow the pattern of typical chemo hair loss, so it seems I’m on this thinning journey. I bought some head protection, scarves and hats, for the time being. For now, enjoy the torture #clevercolette put me through “styling” my hair. She decided 11pm was a good time to do this styling session, so yes I look pretty wrecked. Oh and a bonus picture of my hair when I wake up.

Onward.

Restful Sleep—Cycle 7, Day 8

So on Days 4 and 5, I can barely keep my eyes open. I can have a short conversation but my eyes will likely be closed. Most of the time I am just asleep. The next few days, I feel tired and close my eyes often, but I can’t get restful sleep. I’m stuck in this twilight type of sleep. Like last night I was sleeping but there was this running commentary like another person in my brain trying to go over all of the problems of the world and where I stood on them or how I had acted to help. An example that I can remember is that yesterday we found some clumps of dirt that maybe resembled some sort of insect nest? And my dream commentator was figuring out what it was and landed on that I had gone onto an app that helped me discover things harming the environment, so I had gone on a rampage to dig up certain plants to save and certain ones to ditch but I hadn’t cleaned it up. This “dream” continued but I shook myself awake to put a stop to it. I was saying to myself I have to make sure I know I didn’t do this. Obviously I hadn’t, I can barely make it from the bed in the back to the recliner up front. Anyway, it’s this commentary in my dreams about every little issue. I start to fall asleep and this commentary starts, so I shake my head and think, “no, I’m not dreaming about this. Dream of F1, puppies, cats. Not this stuff.” But that doesn’t seem to work. Btw, I am often drifting off to sleep Apple Music “Sleep Sounds,” which I thought might be protective but it is not.

In addition to these troubling dream commentaries, I’m also finding myself uncomfortable and awake enough to stretch as I “sleep.” I will be putting my legs on my knees to stretch my quads and hamstrings. Sometimes I move my leg to massage my calf with my knee. I do that when I’m awake as well, so it’s habit maybe? Either way, I’m obviously not sleeping well if I’m feeling the need to stretch while asleep.

Anyway this morning I am going to reach out to the doctor for a sleeping pill of some sort. And, I think I’ll switch the bulk of my social media intake to YouTube for a while. I’m still actively aware of the issues I see come up on my IG feed, and I have my ways to tap in, but I think my brain is taking on way too much right now. I need to rein it in as I get to this back half of chemo treatments. So, F1 videos, cat videos, and dog videos are my self-prescribed antidote. Feel free to send me links to happy or funny videos over the next few weeks! :)

Food. Glorious Food.

I’m sad. I want to enjoy food and drink again. Palatable is not cutting it. However, the only way to fix it is time. I don’t think tongue removal willl do the trick. But I am way over it with 10 weeks left in treatment. Less than a pregnancy trimester…I can do this.

Pleas pray that taste comes back quickly after chemo ends in early August.

Meant to post pics with the last one…

Meant to post pics with the last one…

Cycle 6, Day 13–The Hat Stage

Didn’t get a chance to post this yesterday:

Well the good news is I can eat a little bit more as of Day 11. I had a Trader Joe’s premade protein drink today at room temperature and I was able to drink 2/3 of it. Had a deli meat half sandwich, and one piece of homemade pizza. Then I finished the Trader Joe’s protein shake before bed. Today I ate a Granny Smith apple and 3/4 of banana choc chip muffin and a bowl of Honey Nut Cheerios. Maybe I’ll have a snack before bed.

Now to the subject matter: hats. “You won’t likely lose your hair, you might have some hair thinning.” Well, I definitely have hair thinning, perhaps hair loss, that remains to be seen over these next 6 treatments. I have a little bald spot on the back of my head, and quite a bit of exposed scalp along my natural part, and seemingly every other part. I don’t seem to be losing as much around the shaved part of my head, so that’s why I’m sticking with the idea of hair thinning not hair loss. I do have to say with the “hair thinning” label, I have lost more hair than I expected. My hair has been thinning just from age, so apparently the chemo is accelerating that!

Hats and me have never been a good match. I have a small head. It’s been quite the joke amongst friends that IF I want to get a hat, I have to shop in the kids section. However, less for vanity more for scalp protection, it’s time for me to break out the hats. I found two baseball type hats in the women’s section at Nordstrom rack. One actually fits pretty well; it’s a north face light weight hat. Now when it comes to wider brim hats to protect more of my skin, they pretty much all come down to my eyebrows. So, I will continue the search for the best hat for a Lacey-sized head.

Onward.

Cycle 6 Day 7—Possibility vs. Probability

I had 2 specialist appointments last week. First with my cardiologist and second with my nutritionist. These were both first encounters, so I was slightly nervous. Thankfully they both met my high standards.

Cardiologist:

I finally had a doctor who was willing to engage me at my level of understanding and research, rather than feeling like he needed to glaze over things or just tell me not to worry. He sat with me for 20-30min answering all my questions and thoroughly explaining things but not at all in a patronizing way. For those concerned we came to these conclusions and action items.

1. The tachycardia I experienced last Monday is multi-factorial including dehydration and chemo effects. It will be monitored and managed, but is unlikely to cause major issues bc I don’t have pre-existing complications.

2. The EKG ordered by my oncologist NP was all good. Glad to have nothing extra going on there!

3. I can’t remember if I have addressed that in my genetic testing a genetic mutation that can affect the heart was found. It requires some inquiry, but it is not urgent. He said waiting until post-chemo for the baseline study is totally fine. Mostly bc we do not have a family history of sudden cardiac events, especially at a young age.

4. He was just as concerned and shocked as I was that the hospital discharged me last month without doing lower extremity ultrasound to verify there isn’t/wasn’t DVT. So I will have that imaging done tomorrow.

5. I will follow up with him in late September with labs and another DVT ultrasound done prior to our visit. We will evaluate then if I can come off of eliquis. Assuming this one comes back clear.

6. He explained my concern about my platelets dropping and eliquis. He explained that eliquis is not targeting platelet levels but instead a different factor released from platelets that cause coagulation. So if I do go below the threshold there will be an intervention that should not counteract the goal of the right level of anti-coagulation.

Nutritionist Thankfully she did not come from an anti-fat perspective. I kind of assume most nutritionists in the oncology field wouldn’t have that bias, but I’m also sure that’s probably naive. The news was not great about helping me eat and drink more, but she provided some good insights. What I appreciated most about her was that she works in probabilities, not possibilities. Remember when I was annoyed with my NP for saying, “hopefully your body will adjust to the medication, and you won’t have as many side effects.”? My nutritionist was more based in probability sharing that as chemo continues, I should not expect anything to get better. All of my side effects are likely to stay the same or get worse.

1. She said, “don’t expect to drink anything cold until post-treatment.” Bye bye Milkshake Day. But maybe there is a possibility ;)

2. Similarly I should not expect my taste to get better, however I can use tools to make things palatable. “Palatable.” That’s the realm I am in now. The goal is not to enjoy food, it is to make it edible. If it doesn’t taste like poison, I can use salt, honey, lemon, spices, herbs, etc to adjust the flavor to be more palatable.

3. I’m supposed be drinking 64oz of fluids every day. And she suggested doing 32oz of those before noon. I am not even close to that. I can’t even get to 32oz by bedtime!

4. Eat several fist-sized meals/day. I’m definitely eating small portions, but I’m not sure 1-3 times/day counts as several. It’s supposed to be more like 4-6.

5. Along those lines, 2200cal is supposed to be my goal to maximize nutritional needs during treatment and to support healing. I’m not a calorie counter, but I’m pretty sure I’m failing at this metric as well.

6. She gave me a lot of tips and options to get in those extra calories. So far, I’ve been doing slightly better, but I’m definitely not up to the standards yet. Hopefully I can get there.

7. I think the hardest part to accept is that the loss of taste can linger beyond treatment for weeks, months, even a year. The loss of taste has been the worst side effect so far. Tingling fingers, tremors, fatigue, hair loss, sensitive to cold touch, all annoying. But the inability to drink cold liquids and to taste food normally has been the most frustrating and depressing. I’ve said before I wasn’t ever really a food lover, more of an eat food that tastes fine. Nothing was blowing my tastebuds away on a regular basis. But damn, I should have been grateful for what I had. I have no idea if this is actually how I would feel, but in my mind I’d rather have a feeding tube or some sort of injected nutrients and calories, than have to deal with eating tasteless room temp to warm food. Same thing with fluids. Nothing I drink quenches my thirst and feels refreshing, so just hook me up to an IV and fill me up 1x/day. I know that my thinking on that is naive, and I’d probably be pretty miserable, but the fantasy exists.

I’m grateful for good healthcare support. And my cardiologist gets my highest of praise. I don’t think I’ve felt that heard and understood coming from a doctor’s office, ever. Knowing my high standards, my doc should feel quite proud ;)

Onward.

Cycle 6, Day 1 into the a.m of 2—Here We Go Again

It is 3:30am on Day 2. My infusion was fairly simple today. I had quick blood return so hopefully we are over that obstacle for a while. This infusion was different because I fell asleep within 30min of my pre-meds which included Benadryl. The Benadryl usually hits me with a little fog, but then I bounce back and get some scrolling and writing done. This time however, I slept basically the whole infusion time. I was fairly fatigued most of the day. But still no bedtime sleep. Everything else was typical. Cold sensitivity, spiked fingers and legs, tremors, nausea, first bite which has now evolved to first sip as well, hair “thinning.”

Today I have an appointment with my cardiologist to discuss a gene associated with some cardiac issues and to discuss my pulmonary embolism. I’ve been ordered by City of Hope to get an EKG, so I’m hoping I can just do it at the cardiologist office tomorrow. The poor doc is going to be greeted by me in all my pump day 2 glory with my bright red face. I imagine I might have some tachycardia tomorrow as well. So he should get to see a pretty full picture of my cardiac experiences.

The chemo dread was REAL this morning. I stayed in the shower longer than usual. I got dressed slowly. I generally just moved slowly. We got out early enough to make it on time. But man it was hard to walk into that building today. I was also tired because I had spent a lot of my dream state negotiating peace deals and exchanges, but it was all in the context of working these issues through with mothers. So perhaps my lack of sleep duration and restful sleep also contributed to me falling asleep this time, but I do know that I typically haven’t slept the day before infusion either. So my money is still on the Benadryl hitting hard.

Bracing for the next few days.

Onward

Impending Infusion.

10 hrs…until Cycle 6, Day 1. I’ve tried to take advantage of my decent days, but I’ve also been somewhat depressed and resigned to the fact that I am going to feel yucky again for the next 10 days. The first 5 are the worst, so I suppose that’s less terrible than 10 days of feeling the same as days 1-5.

Things that brought me joy over my decent days 10-14:

1. Lando Norris’ first F1 Grand Prix win. I loved seeing his reaction, but also all the other drivers and teams celebrating him. With Max Verstappen’s dominance, we haven’t really gotten that feeling of joy seeing someone accomplish a lifelong dream. Not to diminish Max’s records and approaching GOAT status, but I just haven’t experienced the joy that I had on Sunday. I’m ignoring the fact that some of that was spoiled by a certain visitor to the McLaren paddock.

2. Making calls and sending emails to government officials. I’ve made several calls and sent several emails to advocate for protecting the right to protest and to plead for a red line for Israel’s bombardment and occupation of Gaza. It has broken my heart to see the images and listen to the stories of the plight of children in Gaza. I’d love to look away, but I can’t. It’s similar to when I visited concentration camps during a high school Europe trip. You don’t want to go. Why would you want to be in such a place where so many atrocities were committed? But it was necessary. It changed me. I cried, a lot. But for me, it is important to know history so we can try to stop the cycle of repeating it. It doesn’t seem to be going so well right now, but I have been encouraged to see people gathering for causes to prevent and end the current backslide.

3. My magic vein! I have to get bloodwork done every other week to make sure my body can handle the next infusion. Originally, I had planned to go to the infusion center to get my blood draws from my port, because I have very tricky veins. Typically, at a regular labcorp I have to say “My veins are almost impossible to find. I usually just have people use my hand.” That is often met by, “Oh well, let me check your arms first.” Then after lots of squeezing my hand on my part and slapping my arm on their part, they give up and go for the hand or they try in the arm only to fail and use my hand. However, about 3 weeks ago, I was at my primary care doctor, and they needed blood for other reasons. I gave my typical warning to the nurse, but she was persistent. She worked with my arms using more touch, less sight, trying to find a good veing in my arm. She was hesitant to use my hand bc I needed 5 vials taken, and she felt like my hand vein wouldn’t hold up to that. Anyway, after about 20min, she found my magic vein. I knew there was one deep in my left arm, but I couldn’t pinpoint where for her. She noted that I have a tiny mole just about a millimeter above my magic vein. So…for the last two blood draws, I have been able to walk into labcorp and tell them to look for the mole and search there. I am in and out within 5 minutes, whereas it used to take 15-30min. Thank goodness for the nurse who was determined to find that vein!

4. I’d like to say the fact that I am halfway done with treatment is bringing me joy. But it is not yet. It still feels like a lot. I’m not quite sure how I would celebrate that if I were to. A special dessert, can’t taste it. A special meal, can’t taste it. An adventure, don’t have the energy. I guess I’ll have to stick with Lando Norris’ first F1 GP win being my own little celebration. Or maybe a loud primal scream will do the trick.

Onward….

Cycle 5, Day 10–Stand Up Shower Day

So today begins a, hopefully, trend of 4 decent-good days until the next infusion. I know I’m on the upswing when I can stand for my whole shower. My brain has mostly come back online by Day 10 where I feel like I can accomplish some tasks and set up the family schedule for the next cycle. Taste still gone, but I can manage to eat a little bit more. It seems that I lose weight the first 9 days, then I can put some back on in the 4 days, but there is still a deficit. I meet with the nutritionist next Thursday, so hopefully I can get a better handle on things for future cycles. I do think that I need to request hydration on my pump disconnect day, so I will be on top of that.

The weirdest thing that kicks in on these last few days is that my nose gets cold, just my nose. My nose is froze. My toes isn’t froze. And I’m not hungry mothah. (a chemo variation on the best quote from 101 Dalmations) There is a dryness in my nasal passages that starts earlier in the cycle, but the nose being cold becomes more pronounced later in the cycle. My sinus passages tend to hurt more on these days as well, but that’s more easily managed. My cheeks get cold also, but I FEEL the cold on my nose just sitting inside at room temperature. Going outside hasn’t really mattered what the temp is, I’ve gotta cover my cheeks and nose. I imagine that will be different when we head to the desert again in a few weeks!

Aside from my chemo journey, I’m having a lot of distress around the state of our world. Obviously there is the whole apartheid and heartbreaking deaths of 10s of thousands of children in Gaza and all the other disturbing acts happening there… But also in Africa: Congo, Mozambique, Sudan. War in Ukraine. And then back here at home we are not suffering such dramatic violence, but we are funding it elsewhere. I am disheartened about our currrent status as a country of the world.

The U.S. has had our major faults, but I used to feel like the people’s voices had an impact. However, I currently feel that our upcoming presidential election leaves us two pretty terrible choices. I will be forced to vote for the one that doesn’t have the stated motive to dismantle checks and balances and federal agencies. The one who has helped with student debt relief. The one who doesn’t desire to strip women of bodily autonomy. But also the one who perpetuates a false narrative about peaceful protests. The one who supports police brutality and shutdowns of beautiful and diverse students coming together as communties to understand each other and stand up for human rights. The one who keeps sending money to aid a military that is far from “the most moral military in the world” that continues to violate international human rights laws. The one who can’t seem to draw a red line because of “right to defend itself.” The one who can’t seem to understand the concept of proportionality. The one who refuses to retract falsehoods about what actually happened on October 7th. Note: I do not support the atrocities committed by Hamas on that day, however there are lies perpetuated about what actually took place and lack of responsibility taken by the IOF with how many civilian and hostage deaths they are responsible for. The one who can’t seem to differentiate between Israel and Judaism. The one who keeps letting the abuser investigate itself. The one who pulled funding from humanitarian aid without actual evidence of wrongdoing. The one who is susceptible to being pulled into a regional war. All I ask, if you can’t find it in your conscience to decide between these two candidates, is that you at least still vote down ballot. The President only has so much power (for now until Trump tries to implement Agenda 47 or Project 2025). The only way to change the system currently is to pay attention to down ballot races, otherwise we will continue to have to hold our noses and vote for the least terrible option. I know for me I will have to focus on the fact that I will be voting for human rights that WILL be protected under one candidate and not under the other candidate.

So yeah, when it comes to thinking about my own death, which I still hope is far in the future, I don’t feel like I’ll be missing out on a great trajectory for humanity. I hope that I will be. Younger generations seem to have their moral compass set in human rights direction, but people age and get jaded and selfish, so who knows. Progress is slow. I’m okay with that (ish). I’m not okay with stagnation or regression. And right now, I’m seeing very little progress when recognizing what our world needs.

Onward…..knowing I probably pissed some of yall off. But I stand firm in my belief that we can figure out how to honor the humanity of ALL without playing politcal chess.

Cycle 5, Day 7–Back to the NP

I had my follow-up today with my favorite NP. The appointment went well because I took control of the appointment. I didn’t wait for her to ask questions. I went through all of my concerns, and the answers may not have been deeply informative, but they were generally satisfactory.

We addressed my lack of taste and appetite. There really isn’t much I can do about it other than keep experimenting. Oh and I can employ the Hook movie Lost Boy strategy of imagining the taste of what I’m eating. I’m skeptical of this strategy, but I’ll try it. “I am eating cheddar cheese. I taste cheddar cheese….” I will meet with the nutritionist this week to see what we can do about me maintaining my weight. Which of course brings me to an important point. I’ve shared before about my issues with body image, relationship to food, and weight loss. However, I find it important to point out that my current weight loss of more than 10% during treatment puts me at a higher risk of overall mortality. So, as I’ve said in the past, comments about my body, positive or negative are not welcome. And perhaps it’s important to remember that not all weight loss is good weight loss even for those in larger bodies. Of course, I am seeing the nutritionist to mitigate the effects of this weight loss, but truly, don’t make comments on other people’s bodies as positive as you think it may be.

Anyway, what took most of the appointment was addressing my high heart rate. I had it on my list of things to address, bc my heart rate goes pretty high just from standing up and walking to the kitchen or bathroom within the first few days of infusion. Yesterday I did 5 EKGs on my Apple Watch which were all inconclusive or couldn’t measure, but I attributed that to watch dysfunction. However, I was obviously feeling heart rate changes and acceleration to even think to use the EKG function on my watch. But my heart rate decided to just make things loud and clear today. I was at 155bpm at first measurement in the office, then I stayed between 135-145bpm during the appointment, which lasted about 20-30min. That was enough to raise red flags. She gave me the choice to try to drink a lot of liquids to lower my heart rate then go get an ekg if that didn’t lower my heart rate. Or I could get IV hydration at the infusion center, monitor my heart rate, then go get an EKG if there was no change. I said the option of me not having to force liquids down my throat is the best option.

So off I went to the infusion center to see my friends. I was warmly greeted and quickly hooked up to an IV bag set to drip for 90min. Even within the first 20min my heart rate began to fall. By the end of the drip I was still at 102bpm, but that was low enough to go home to just monitor my heart rate. I’ll have an EKG within the next few days to make sure nothing else wonky is happening. I feel pretty confident that dehydration was the issue. It was also super helpful to have a talk with one of the infusion nurses about my struggles with hydrating. She said “Do what you can, but don’t make yourself sick about hydrating. Call us, we can get you hydrated without the stress of trying to force liquid down your throat.” That’s not an exact quote but close enough. I’m curious if the nutritionist might just put it in my plan do go for hydration on certain days in my cycles.

I’m home now. My body feels better with a lower heart rate. I hadn’t realized how on edge I actually felt when my heart was working so hard. Even in the infusion center I could feel tension release. While the IV fluids didn’t fix the stomach discomfort or peripheral neuropathy, it released one pressure valve that I didn’t realize was causing as much discomfort as it was. I’m exhausted from all the excitement today.

Onward.

Gratitude: clevercolette had big plans of ice skating with friends for a fundraiser today, but my dysfunction threatened those plans. Thankfully we were able to get her to the ice skating rink, and the other parents swooped in to help her enjoy the rest of their plans. She is being taken care of and has a ride home, and that is something to be very grateful for.