This Week’s Adventure

This week’s adventure in cancer treatment involved a fever. When Joyce, my oncology nurse, did her teaching session with me before I started chemo she really emphasized that if I had a fever of 100.5 (or higher) I was to call the triage nurse right away. Monday afternoon I was feeling cold all afternoon, and that evening when I checked my temperature it was 99.1. Nothing to worry about yet, but keep an eye on things…

Tuesday my temp started out at 99 at 7 a.m. and was up to 101 at 3:45 pm. So I called the triage nurse – left a message. She called back at about 4:15.  Please come in right away and get labs drawn. So Kevin and I hopped in the truck (since the car is still in the shop – did I mention that our car’s check engine light came on last week and it’s now spending time in the shop with its Subaru friends while waiting for a part?). At NorthStar they tried drawing through my port without success. So instead they drew labs from both arms (I have bruises to prove it).  They drew blood for cultures, to see if I have an infection, and they drew the usual labs (blood counts, etc.).  The usual labs are processed very quickly – and the nurse was able to tell me that there was nothing concerning with those labs that would make them start me on antibiotics right away.  The blood cultures take up to 5 days to grow, but as of today (Saturday – day 4) nothing has shown up there.

So Tuesday evening, after having my labs drawn and a brief assessment, my nurse said to take Tylenol for my fever, stay hydrated, and come in tomorrow for chemo, unless I heard otherwise (Wednesday was to be my chemo day this week, since Monday was a holiday). Other than feeling chilled I didn’t have any other illness symptoms… no cough, no snot, no rash.

Wednesday my temperature at my afternoon chemo appointment was only 99.3, so I had my chemo infusion. By the time I got home it was supper time and then I went straight to bed because I was SO sleepy (from the Benadryl). Thursday I felt good… really, really good. I worked all day and didn’t get tired. And I didn’t have a fever at all. Yesterday I was good for most of the day, but when I checked my temp at bedtime it was 99.6. This morning it was 99.4 and by noon 100.6 … so I took some Tylenol and called the on call oncologist (haha… on call oncologist… that’s a funny set of words) – She called back and said to just keep an eye on things for now.

So that’s the excitement this week. Chemo is serious stuff, and so we take fevers seriously. If I were just a normal human and had a low-grade fever like this, I’d probably just take my Tylenol and keep on doing what I do. I sure do appreciate the availability of the triage nurse and the on call oncologist (tee-hee… I just had to say it one more time).

This Week’s News

So far this new chemo (Taxol) seems to be easier on me than the previous 8 weeks. I haven’t had to use any anti-nausea meds (HOORAY!), and the fatigue hasn’t been quite as bad. I still wear out fairly easily, but Dr. Jones says that I will have residual fatigue from my previous chemo regime (Adriamycin/Cytoxan) for a few more weeks. I’m hoping this is true. One other side-effect predicted was achiness around day 3-4… and sure enough I had a backache and quads aching, as well as random little bursts of achiness here and there on Thursday and Friday. Fortunately ES Tylenol seems to keep it to a minimum. Today is not as much, but still feeling calf twinges.

I am still hairless on my head, still have eyebrows (though thinning a little bit), and my eyelashes are definitely getting thinner. My eyes have been irritated off and on, as if there is stuff in them, and I wonder if the flaky dry skin on my head and around my eyes is falling into my eyes more easily as the lashes thin. My skin is dry and not as elastic as before (you can see the wrinkly bag under my eye in the photo below). Lotion helps with the dryness, but not the elasticity.

See, I do still have eyelashes… but they are much sparser. And look at that nice bit of eyebrow up there.

Wednesday afternoon I had my results appointment with the genetics counselor, Tarah.  The good news is that I don’t have any genes specifically related to breast cancer, YAY!  There is one gene that has a variant of “uncertain significance” and, according to Tarah, these things happen, but are not reason to worry.  When I first met with her and we talked about which genes to test, she had said that the more genes we test, the more likely it is that something of uncertain significance might show up.  We had 36 genes tested that are considered the breast/gyn cancers panel, and the preliminary-evidence genes for breast/gyn cancer.  Some people only do the top 15 or so, but I opted for a more comprehensive one.   So one gene had a “sequence change replacing threonine with arginine at codon 1376 of the BRCA1 protein”, and that is a variant, but it “has not been reported in the literature in individuals with BRCA1-related disease”.    In other words – There’s no evidence that this variant is related to cancer.   Tarah also said that everyone has genetic variants and that’s what makes us unique. I’m satisfied with that, and am happy that (as far as we know) I’m not passing any breast/gyn cancer genes on to my kids.

Meanwhile, back in the everyday world, Kevin made a huge seafood chowder, and homemade focaccia bread earlier this week, which we had for supper Tuesday, Wednesday, and Thursday nights. Last night I had a reprieve as we ordered out teriyaki. Tonight we’ll finish the chowder and move on. It was really, really good, but it’s time to eat other things!

What’s New?

Yesterday (2/11) I started my new chemo treatment… but first the weather report!

Like much of the state of Washington, we have had snow on and off for the last week or so. I would give you total inches here in Yakima, except we had blizzard conditions on Saturday that caused a lot of drifting, so I have no accurate measure. If I were to guess, I would guess a total of 15-ish inches in the last week. Sunday (2/10) we had a break in the snow, the sun even came out for a while, and Kevin excavated the driveway and front walk. Most of the time he was shoveling about a foot of snow. At least it wasn’t the wet-cement-and-snot-like snow that Western Washington gets.

Sunday night it snowed another inch, so Kevin was up early sweeping/shoveling the driveway, so that we could get to my 9:45 appointment at NorthStar. The schools were closed, but NorthStar was open. Cancer treatment must go on.

First I had my labs done – including a new vial of blood for the clinical trial in which I am participating (more on that in a minute). Then I waited for a bit to see Dr. Jones – there is always a wait, because she needs to see lab results before she can okay me for chemo. The labs looked fine and she is pleased with how I’m doing. She looked at my tongue and said the bit of white that I’m seeing isn’t thrush. She also was very upbeat about this next chemo and how I will feel with it. She doesn’t expect that I’ll need to take any of my anti-nausea meds. I may be achy after a few days but can treat that with Tylenol. All good news.

I think I mentioned before that I am participating in a clinical trial. It’s not a blind trial at this point, so I know that I am in the control group and NOT receiving the extra chemo med (Carboplatin) that some of the participants are receiving. So for me, the only difference is that the clinical trial nurse asks me some questions about how I’m feeling, and they draw an extra vial of blood every 3 weeks.

After seeing the doctor I went to the infusion suite which only had 2 seats left! They were really full yesterday, with no cancellations for the morning, and only 3 cancellations for the afternoon. My pre-treatment was a little different: A Benadryl pill – twice as much as previously (to pre-empt any allergic reaction); an I.V. steroid (more than previously)… maybe Dexamethasone… (to preempt any allergic reaction); and an I.V. tummy calming med (maybe Prilosec). Apparently it’s not uncommon to have an allergic reaction to Taxol, so they watch you very closely the first time they give it too you. After receiving the pre-meds they wait half an hour before starting the Taxol, giving the steroid time to get into my system.

Then they give the Taxol, I.V. over the course of an hour. I had a bell to ring in case I felt anything weird happening, and my nurse checked on me fairly frequently. I didn’t feel anything weird, so ate my pudding and my potato chips (healthy snack, right?), and read my book for a while.

About 10 minutes before my infusion was complete I started getting really sleepy (probably the Benadryl), just as Kevin arrived. So I didn’t nap… but closed my eyes while we chatted, and took a 3 hour nap when we got home! Oh, and it snowed another 2-3 inches yesterday morning and afternoon.

Other than feeling really sleepy most of the day and evening, I didn’t feel any unusual effects from the treatment. Last night I slept quite well until 3:30 a.m. – when I woke up and was wide awake the rest of the morning (probably the steroids). So now I am sitting on my couch with a nice view of our snowy neighborhood. The snow continues to fall. Yakima schools are closed again today. We had another 1-2 inches of snow, or so, overnight.

Here is Kevin sweeping/shoveling the driveway so that he can drive me to my appointment. I don’t think you can really appreciate how tall the piles of snow are on the sides of the driveway… but I think those piles will still be there in March.

Today…

I haven’t been writing much because everything has become the new normal. It’s routine, mundane, and not all that interesting. So here is today as of 7:45 a.m.:

  • woke up at 5
  • sat on the toilet for a bit and pooped
  • sat in bed until 6 looking at Instagram and Facebook
  • got up, put on daytime hat and warm sweater and let the dogs out
  • fed the dogs
  • made hot tea (favoring Rooibos Madagascar Vanilla these days)
  • ate a bowl of raisin bran while…
  • reading the newspaper and doing the Sudoku
  • took an Ondansetron
  • brushed teeth
  • rinsed mouth with baking soda and water
  • took a Clotrimazole lozenge
  • made another cup of tea
  • sat down to laptop (I sit on the couch in the living room – the warmest room)

And I do almost exactly the same thing every day. Now I’ll log in to Seattle Children’s remotely from my laptop and work for the morning – following up emails, attending meetings, etc. If I’m fatigued by early afternoon (which I probably will be) then I’ll clock out for the day and spend the afternoon doing several of four usual things:

  • napping
  • reading
  • watching Friends on Netflix
  • Facebook and Instagram

I’ll eat a mid-morning snack – cottage cheese, or peanut butter toast. I’ll eat lunch – sandwich, or soup, or leftovers. I’ll eat a midafternoon snack. I’ll suck on a Clotrimazole lozenge 5 times total throughout the day, and rinse my mouth with the baking soda and water after every snack/meal.

Like I said… it’s mundane now. There isn’t anything new to report. This is the part of the journey where the newness has worn off and the finish line is still a long way off. It’s riding on the flats with a bit of a headwind and miles to go.

Just keep swimming, just keep swimming, just keep swimming swimming swimming (to quote my favorite blue fish)

Of course the 11 inches of snow that we had on Monday did make life a little more interesting…

Sometimes I Feel Like Bartholomew Cubbins

I have been overwhelmed with kindness from so many people – gifts, cards, and many well-wishes. I truly feel the love and the blessings for healing. I feel wrapped in love as I wrap myself in these many treasures, both physical and word. I can’t even begin to thank you all for everything.

I have received many, many hats – some handmade, some store-bought, some thick, some thin, some shiny, some plain… and each and every one of them has already been perfect for one time or another.

Many of my new hats

I feel a bit like Bartholomew Cubbins, although I don’t wear all my hats at one time. But here’s a little hat fashion video for you:

Warning: this was my first ever attempt at video editing… Lol!

No more hair, but the eyebrows are still there!

So that’s JUST my hats… I’ve also received scarfs, prayer shawls, blankets, gloves, socks, books, cookies and other goodies, bath bombs, and so much more… I couldn’t make a video with all that!

Your gifts, both physical and emotional have lifted my spirits and made this journey a little brighter… and for that I can’t thank you enough!

Thank you from the top of my bald head to the bottom of my heart ❤

Is It a Varied Thrush?

“Although it looks superficially like a robin, the Varied Thrush is far more elusive, usually feeding on the ground among dense thickets.” – (https://www.audubon.org/field-guide/bird/varied-thrush). There’s more than one kind of thrush… there are 10 varieties of thrushes listed in the Audubon guide to North American Birds. Unfortunately, the variety of thrush that I am currently familiar with is the fungal infection on my tongue… Here’s a picture:

This was the day before I called the triage nurse about my white tongue.

I have had the usual thick spit and bad taste in my mouth, and tongue feeling weird because of those factors, but on Monday I noticed that my tongue actually looked coated with slime. I thought it was just related to the thick spit, etc. Tuesday it still looked coated and whitish so I took this picture. Wednesday it still looked white (and maybe a little whiter than this) so I thought I’d better call the triage nurse at NorthStar to make sure she didn’t think it was thrush. Mmmm, yeah, she thought it was thrush. So my oncologist prescribed medicine. Now I have medicinal lozenges that I melt on my tongue 5 times a day for the next 7-14 days – Clotrimazole. the lozenges aren’t too horrible… a slightly minty chalky tablet that’s a little smaller and twice as thick as a dime. Apparently thrush is not uncommon with chemo. Not only does the body have a hard time fighting bacterial and viral infections, but it doesn’t do as well fighting fungal infections either.

In other news… I’m finally feeling pretty good, and was able to work a good part of the day yesterday and today. That third round of chemo took a lot of wind out of my sails with overall fatigue, as well as the usual complaints.

Kevin cooked steak, twice-baked potatoes, and made a salad for supper tonight – it was really good! I might have taken a picture of this feast for you, but I ate it instead 🙂 So here’s a picture of a varied thrush, which is much more attractive than my tongue thrush!

Okay, so it’s actually a drawing of a robin. I saw some beautiful pictures of Varied Thrushes online, but decided I shouldn’t “borrow” other people’s work… copywrite and all… Check out the link in the first paragraph to see a Varied Thrush!

One Week Later…

Remember last post when I guessed that I would be hit harder this 3rd round of chemo than I was the second? Well, I was right. It’s early morning on day 8 of the 3rd round. 5:50 a.m. to be exact. And I’ve been awake for an hour. Probably because I went to bed at 7:45 p.m. Current status: stomach okay, nasty taste in mouth, thick spit, watery eyes, no headache, no body aches, a little shaky/weak.

Yesterday was rough, partly because I didn’t take the Ondansetron (AKA Zofran) in the morning. My reasoning was this: I stopped it by now the last two rounds, and it makes me constipated. I felt gunky (true medical word in my dictionary) during the morning, but it seemed mostly due to fatigue, weakness, and nasty tasting mouth. But as I watched the Rams/Saints game I felt gunkier. Our power went out at half time so I took a little nap… and when I woke from that I was feeling ookie (another fine medical term) in my tummy. I caved and took an Ondansetron… too little too late. I felt ookie in my tummy the rest of the day, and fatigued, and weak, and had a headache. Poor Kevin asked me what I wanted for supper and I just whined… I don’t care.

The good news is that after supper (Raisin Bran with blueberries and protein powder… sounds gross, but it hit the spot) I took a Lorazepam and 2 Tylenol, and went to bed. I slept well! So now I’m awake and feeling decent, stomach-wise, and I’m not going to make that same mistake twice. I’ll be having Ondansetron to start the day, along with my Raisin Bran and some stewed prunes, lol… got to keep the constipation in check!

There’s a reason the doctor prescribes anti-nausea medications.

Halfway Through the First Half – 1/15

Yesterday I had my third chemo treatment. In two weeks I will have my fourth and final treatment with the Adriamycin/Cytoxan combo. Then I will be finished with the first treatments. Two weeks later I will start in with the Taxol (different chemo) treatment… once a week for 12 weeks. Rumor has it that the Taxol doesn’t whup your butt as much as the A/C combo… let’s hope the rumors are true.

What I’ve noticed so far… The first round of A/C combo overall wasn’t as bad as I was expecting. The second round was worse than the first – more fatigue, more constipation, and it took several more days to bounce back. So with that in mind, I’m anticipating that this third round will likely be even a little worse. I’ve tried to be prepared for that by eating my raisin bran and stewed prunes even when my poop has been fine the last few days, and by not committing to anything in particular during this week. Otherwise, it’s one day at a time, with a light at the end of the tunnel.

After spending my morning at NorthStar yesterday, I came home, ate a little lunch (peanut butter toast) and napped until late afternoon. The dogs woke me up as they alerted us to the presence of the UPS driver (yay a package from Creative Memories), and a few minutes later the USPS driver (YAY a package from my Tacoma Pals!!!) What wonderful treats to receive on treatment day. You Tacoma Cardiology peeps are my new favorites, and I’ll have to do a photo shoot to show off all the wonderful “keeping the baldy warm” presents that you sent!! Later…

Now it’s the end of the day after treatment, which I spent watching TV and napping, and eating, and putting drops in my eyes which are watery and irritated today. I even read a real book for a while. No nausea, YAY! I’ll share one bald picture, that I took yesterday. But that’s all the pictures for today. Not much energy today.

Most days I wear my red hat that my sister knit for me because it’s super soft and it keeps this bald head warm. Thank you Mom and Dad for the nicely shaped head.

Fatigue

1/10/2019 — I think one of the hardest side-effects of the chemo is fatigue. And it’s interesting what brings it on. In the first days after treatment it’s always there. But then I start off my mornings feeling pretty good, and tire as the day goes on. Last cycle of treatment I felt relatively little fatigue for the second week… just at the end of the day (after 7 or 8 pm) most days. This cycle it’s been a little longer getting to this point. In fact yesterday (Wednesday) was really the first day that I had an almost full day of feeling pretty good.

This fatigue is a weariness that washes over me… exhaustion. And it’s not just a physical tiredness, but a mental exhaustion too. Don’t ask me what I want to eat. Don’t ask me to make any decisions at all. My brain and my body just want to rest.

I have been surprised by what brings on the fatigue. Activity, like walking around the block with Kevin doesn’t seem make it worse, and sometimes even seems a little better. But stress can definitely trigger it. We had the furnace people here on Tuesday, and they were here for several hours. Rosie and Charlie stayed in the bedroom (because they have bad manners) but they barked and barked and barked. By the time the furnace people left I was exhausted, because the dogs were stressing me out. I didn’t expect that stress would cause more fatigue than, say, a hard workout at boot camp used to do. And it can blindside me…. I’m okay, I’m okay, I’m okay, I am suddenly completely Exhausted!

So tomorrow we are going to become the proud owners of new furnace/AC units. Aren’t we lucky? Our old furnace/AC units were just that, old (and fatigued, haha). 25 years old to be exact. And it turns out that the something-or-other on the motor of the furnace is unfixable and the something pipe has a crack in it. It currently still is producing heat, don’t worry, but it must be replaced. To be proactive, the dogs get to go to doggy daycare tomorrow all day while the HVAC people install all the stuff… and since our house may be without heat for part of the day I will go to my quiet office away from home, at least for part of the day. I am doing what I can to anticipate and avoid stress.

Kevin has been working hard to clear out the furnace room so there is enough space for the HVAC people to do the install tomorrow. Goodbye old furnace!

And Now, a Break for Supper…

(1/7/2019) This is mostly going to be a photo post. Kevin loves to cook. And he likes to experiment with new recipes. And, although he does NOT like to watch The Great British Baking Show (he doesn’t like the competition)… He has found the GBBS Masterclass episodes that are just Paul Hollywood and Mary Berry showing how to cook the technical challenges. Then he looks up the recipe and bakes it.

I am soooo lucky!

Tonight’s Masterclass marvel was Turkey, Cranberry, and Stuffing Chelsea Buns! Oh. My. Goodness. Kevin used chicken instead of turkey, but otherwise stuck to the recipe. Oh, and then we had leftover gravy, so put some of that on top after they came out of the oven. Thank goodness I am feeling a lot better today, and have an appetite, because these were delicious. I’ll let the pictures do the rest:

So there are our Chelsea Buns – it’s like Thanksgiving all over again! Did I mention that there was extra dough that he made into cinnamon rolls? Sigh …