What’s Missing

One of the questions I’ve been asked is What do you miss? You mean besides my hair? Lol! – and actually I don’t miss my hair very much, except for the fact that it helped to keep my head warm… but I have plenty of hats to take care of that problem 🙂

I miss people! I’ve really isolated myself at home, with few outings and therefore few extended periods of human interaction (other than with my husband). He’s awesome… but I do like variety. I miss my family, my friends, my coworkers, my patients and their families. I am probably overly paranoid about getting sick, but a number of years ago a dear friend of our family died during chemo treatment due to a respiratory infection that her weakened immune system just couldn’t fight. So there you have it. I’m being very cautious about protecting myself from germs.

I miss eating out. My care team recommends avoiding eating out (you never know who is really washing their hands)… especially fast food – so again, avoiding germs, we rarely eat out. Kevin has brought home pizza sometimes (I figure it’s cooked and hot, so not likely to carry many germs home with it). Lately I’ve been craving KFC… when my counts get back up to normal after chemo that’s one of the first things I’m eating!

I miss driving long distances! I love being on the road with a good audiobook, and going to see my family or my friends. But driving long distances can be tiring, and since I’m already tired it would probably be too much for me. This means I haven’t been to the west side of the Cascades since December, haven’t seen my parents since then. I haven’t been to Wenatchee, or to TriCities, or to Tacoma, or Seattle to see my work buddies.

I miss boot camp and my friends at boot camp. I don’t miss burpees, and push ups, and frog jumps, and bootstrappers, and… I could go on… and seriously I don’t love exercising, but I DO love how I feel after I’ve exercised, and I do love my boot camp buddies. I also miss that knowledge that if I want to do something physical, I can. I suspect I’ve lost some muscle mass, and it’s going to take a gradual increase in activity to get back to where I was before all this started. On the other hand, I think one of the reasons things have gone so well for me is that I was in good shape last fall.

Health update: I’m doing really well these days. I didn’t have any fever at all this last week. Mostly now I’m dealing with a little heartburn (but the Omeprazole helps), and itchy hands and feet from a bit of a Taxol rash (but the Benadryl cream really helps with that), and relatively mild fatigue towards the end of each week. This is waaaaay better than during the Adriamycin/Cytoxan chemo cycles. 5 more treatments to go!

Thank goodness we finally have spring weather – because I was really missing going outside! Now I can go for a walk around the block. It’s so nice! Next weekend I am going to Leavenworth to scrapbook with my friends (this is about the 15th year that we’ve been doing this). Kevin worries that I’ll overdo and tire myself out too much. So my SIL, Kathy, is in charge of making sure that I rest while I’m there. I worry a bit about germs, but we aren’t crammed together, and everyone is so good about wanting to take care of me that I’m sure I’ll be fine. Here’s a lovely picture of Leavenworth in the spring so you can see why I must go…

The view from our Bed & Breakfast (Haus Rohrbach) – spectacular!

Long Time No See (3/17)

Happy St. Patrick’s Day! It’s a beautiful sunny day in Yakima, with temps breaking 50 degrees and the snow melting away – So Kevin and I went for a walk! It was the first time out walking in a very long time – we’ve had snow on the ground since early February. We even have crocuses blooming today! Here’s a picture of our house and crocuses:

Here’s how things have been going for me lately. My chemo is now every Monday, with a visit with the oncologist every 3rd Monday. I still am running a very low-grade fever most afternoons/evenings, 98.8-99.3 (it seemed like it was getting better last week, but I was 98.9 this afternoon… so it’s still there). My oncologist as well as my nurses don’t think I need to worry about this because my labs all look very good, and because when I take Tylenol the fever goes away. They suspect that it’s just how my body responds to what it is going through. Mondays after my chemo I come home and sleep the rest of the day (thanks to the Benadryl). Tuesdays after chemo I feel GREAT! … probably due to the pre-meds they load me up with on Monday before the chemo. Wednesdays I feel pretty good, but start to wear out by late afternoon. Thursdays I feel okay, but start to wear out by midafternoon, and Fridays I feel okay, until midday when I just need to rest. I focus on resting on the weekends – reading, computering, napping. I’ve been able to work from home a little over half-time.

The side effects I’ve been having with the Taxol have been less grueling than the side effects I had with Adriamycin/Cytoxan in Dec/Jan. Here’s my list: Hair loss (but it was already gone, so no big deal). Watery eyes and drippy nose. Dry ear wax (weird but true). Fragile skin – it seems more wrinkly and crepe paper-like than before, and my nose bleeds a tiny bit. Dry skin – so very very dry! I get so tired when I take a shower, not because of the shower itself, but aftwards it’s a lot of work and it takes forever to lather on the lotion everywhere! Heartburn – ugh… I’ve never had heartburn before, but they assure me that it’s very common with Taxol, and I’m now taking Omeprazole to help with it. Sometimes I’ll have a few random strong hiccups that I think are related to the heartburn. Fatigue – though not as debilitating as with the A/C chemo. The Best thing about the side effects is that I have NO nausea, and am not taking any nausea meds!!

A little over a week ago I noticed a few little tiny bumps on my hands and feet that were sometimes itchy. After my massage a week ago I developed a few blisters on my toes. My theory is that the little bumps were irritated either by the foot scrub or the foot scrub’s hot water. Anyway, the blisters cleared up without breaking open… but I still have tiny little bumps on my hands and feet. Today when we got home from our walk, my feet were especially itchy and hot. I think that heat irritates this “rash”. For now, “we” (my medical team and I) are just keeping an eye on things.

When Kevin removed the carpet in the basement about a year ago, he packed up several bookcases worth of (my) books in boxes.  Two weeks ago I was wishing for more books, so we went downstairs and dug through a couple boxes, coming up with a dozen Dick Francis books.  Sadly, I’ve re-read them all now. I thought it would be time to go digging in more boxes, where I’m sure there are more DF books… but instead we went on an expedition to the library yesterday, and I checked out 3 of their 4 Dick Francis books. I also picked up 3 other books. That was yesterday morning. This afternoon I have already finished 2 of the books, lol! THAT is how I rest.

Here’s my stack of library books from yesterday’s expedition.

Do You Have Questions?

When I was growing up, my mom used to type a weekly letter every Sunday afternoon to far away family members, and I became a recipient of that letter once I left for college. These were type-written, carbon copy letters (you young’uns might not know what all that means… Google it). I, being the youngest and therefore having the best eyesight(?), received the fifth copy (thus least legible – faint and blurry). These days she doesn’t send out a letter every week anymore, but today she did – email to my siblings and myself – quite legible! She asked me two questions today, and I thought I would answer them here. Hi Mom – here are the answers to your questions!

How much of the time do you wear a cap? I wear a cap almost constantly. I have one from my sister that I especially like to wear to bed because it is soft and not too thick (it’s the red fuzzy one from the first batch of hats, Judy). I wear it to bed every night because my head gets cold if I don’t wear it. During the day around the house I almost always wear one of my many hats. I tend to wear the handmade ones (thanks Judy and Paula). Once in a while I’ll take off the hat if I’m hot or my head is itchy, but it’s rarely off for more than 20 minutes. When I go outside (which is unusual) I wear a couple different “store-bought” hats that are really nice and thick and don’t let the breeze through (thanks Tacoma friends). Today when I went to my chemo appointment I wore the Adidas hat which was effective against the wind (temperature was about 23 degrees with a wind-chill bringing it down to about 10). Then, once I was in the clinic, I switched to a knitted hat from Judy (the deep red one with the fancy stitching), because the Adidas hat is too warm for indoors.

Do you still have eyebrows? Lashes? Yes and yes. My eyelashes have thinned considerably, lower lashes more significantly than the upper lashes. My eyebrows have also thinned a bit, particularly toward the sides, but I still look fairly human. I’ll take a picture when I’m done writing. I could add eyeliner and fill in my brows with a brow pencil, but that seems like a lot of work for around the house. And when I’m going out (which is rare – today was my first trip anywhere outside the house in a week) I think I still look reasonable eye-wise, so I don’t bother. I DO put on earrings when I’m going out… another humanizing touch.

Those were Mom’s questions – What about the rest of you, my friends, do you have questions? Sometimes I’m a bit stumped about what to write, so asking me questions will give me some prompts. As you’ve seen in past posts, I don’t shy away from revealing TMI (too much information), so ask me anything 🙂

Here are some pictures for you. I took all but the really close eye close-up today. See, I’m still wearing my earrings from today’s outing.

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…