Normal

I have been meaning to post something for the last couple weeks, but always find other things that take priority. But I put you on my TO-DO list and am writing today. I’ve had the title for this post sitting there on my desktop waiting for me to write. Life is normal… pretty much. I’m working, I’m playing my horn, I’m back on the road some days, I’m going to boot camp. … and I’m not fatigued. I feel really good. In fact, I feel really really good.

I probably feel about the same as I did a year ago, before all this cancer stuff started… but I revel in how good I feel. I have a deeper appreciation of feeling good. The other thing that I’ve noticed is that food tastes REALLY good. Not that it actually tastes better than it did a year ago, but again, I have a deeper appreciation for flavor! When I take my first bite (or first sip) there’s an Ahhhh or a Yummm that accompanies it.

Food: I’ve been diligent about keeping down the fat grams each day, and upping the veg/fruit intake. I make my own breakfast and lunch… so go super low-fat then. And Kevin makes supper any ol’ way he feels like, but including a veg. So a typical day might be this: Breakfast – Frosted Mini Wheats with blueberries and nonfat milk. Morning snack – an apple. Lunch – tuna mixed with mustard, relish, and low-fat sour cream, on a whole lot of spinach (and sometimes some black beans added). Afternoon snack – an assortment of veggie sticks (carrots, zucchini, bell pepper) and a tablespoon of hummus for dip. Supper? Well that can really vary… sometimes it’s pizza and salad, sometimes it’s homemade burgers (now with homegrown tomatoes!), last night it was grilled chicken breasts, corn on the cob, and biscuits. So supper isn’t exactly low-fat, but it isn’t over the top either. If any of you have a recipe for granola that has less than 2g fat per serving, I’d love to have it… I really like granola.

Exercise: I’m back to boot camp 3 mornings a week (if I’m in town). I love the camradarie, and the chance to push myself. I may not be excited about getting out of bed at 4:50am, but I’m so glad I did AFTER boot camp! One thing is slowing me down here….

This was taken on my first day back to boot camp in June.
(Taken BEFORE I had to stop using weights)

Health: I was having this pain, MINOR pain, more like a weird tightness, in my right arm when I stretched up to reach something. Really minor, but I thought it might be that I needed a little physical therapy to stretch out a tendon or something. So I went to my doctor a few weeks ago – and HE called my oncologist because he was worried that it might be lymphedema. (lymphedema, is a build up of lymph fluid trying to work it’s way out of the arm, but being slowed down by fewer lymph nodes [my lymphectomy removed 5] moving lymph along). Even though my arm does not appear edematous (swollen), he thought perhaps there is some swelling inside my arm that is causing this pain. He and my oncologist thought I should ease back on the weight-bearing stuff at boot camp (sad face)… so no bicep curls, no pushups, etc. Since I still get this (minor) pain I now have an upcoming appointment with a lymphedema therapist. I’m hoping she will be able to determine if it really is caused by lymphedema and, if so, work with me on what I can do to get back to at least some weightbearing right-arm exercise. That’s my sorry story of why I’m not fully working out at boot camp.

Other Health… I still have some peripheral neuropathy, numbness/tingling, in the soles of my feet, toes, and fingertips. It doesn’t prevent me from doing anything, but I think my balance isn’t as good as it was because of this. Yesterday at boot camp we were doing a side-shuffle, and the friction of my sock against my foot was the most bizarre sensation… It was almost a tickle… enough weirdness that I chose to stop doing the side-shuffle and just jog instead. And how’s the chemo-brain? Yes, it is still with me a bit… but it seems to be getting better. Mostly I just lose words and names when I’m trying to talk… I know, I know, I am getting older and this is a natural thing – but I am happy to blame it on chemo-brain, especially since it seems better than a few months ago.

Hair: I KNOW you all want to know what’s going on with my hair! somehow hair seems to be what a lot of folks focus on. Perhaps it’s easier and more light-hearted to talk about hair than other physical effects of the chemo. Or perhaps it’s the most obvious chemo effect. But to me, the hair is a fairly minor thing. My hair is coming back EVERYWHERE… eyebrows are good, eyelashes are good, hairy legs, armpit hair and, unfortunately, chin whiskers! I didn’t appreciate NOT having chin whiskers until they started to come back!

The hair on my head is coming back, gradually, as a baby-fine mixture of dark and white hair with absolutely no curl. I have actually had one “haircut” (neck shave and tidy it up over the ears) already, but as you can see it’s quite short, and still needs to fill in some spots. It is what it is, and I don’t bother with a hat or bandana anymore, unless I’ll be out in the sun for more than a minute.

Mental health: I think I’m okay. I certainly have been feeling a lot of joy for everyday life. There is always that niggling worry at the back of my brain… what if it comes back? that’s only natural. And there is that heightened worry about minor things (calf ache, softer poops, etc.) that can be explained logically (boot camp, increased veg/fruit intake, etc.). But that kind of worry happens with any type of close call. I remember when I had a flat tire back in ’85… I had to pull over a number of times after that incident to check my tires because it felt like maybe the car was pulling to the right, or it felt like maybe the ride was a little wobbly. Anyway… I’m doing what I can to prevent a recurrence, and keeping a close watch for anything out of the ordinary… that’s the best I can do. Thank you, ALL of you, for the support, encouragement, and humor that you shared with me throughout these past months. You helped make the steps of this journey lighter.

Sorry About That Weird Post This Morning

Hello my blog-following friends! Somehow a partially finished draft that I started writing in January was posted to my blog this morning. Sometimes during my months of treatment I would start a post but not finish it for one reason or another. Anyway I had 4 starts in my DRAFTS file of WordPress, and somehow one of them posted this morning. It’s a mystery. I have since deleted this inadvertent post, as well as the other 3 drafts (just to be on the safe side).

Please don’t worry that I’m back doing chemo again… or that I’m sleep-writing (like sleepwalking, except writing). I’m not. The WordPress ghost seems to have struck instead.

I’ve been scrapbooking all day, and having a lovely time with friends as my life gradually goes back to normal. I hope you all have a beautiful weekend too!

Where’s the Hair?

So, I seem to be getting more hair on my head… It’s still more fuzz-like than regular hair. And up top seems to be slow to repopulate… perhaps I will continue to look like my dad, or a monk. Meanwhile I have lost more eyebrows and eyelashes. Last time I took inventory I had one eyelash on my right upper lid. Shall I put some mascara on it? Lol! Some of you have heard me say this, but I think I look more like a cancer patient now than I did during chemo!

My appointment with my oncologist went very well last week. My labs are ALL normal. Normal red and white blood cell counts. Normal chemistries. I’m all clear for getting my port removed and for returning to work full time. My energy level feels pretty close to normal too! (Something about not being anemic and not having chemo drugs in my system probably have a lot to do with that!)

Here are a few things my oncologist told me: With this triple negative high grade cancer (like what I had) there is a 30% chance of recurrence in the first 3-5 years with just a mastectomy, but only about a 10% chance of recurrence in the first 3-5 years with chemo too (that’s why we did chemo!). Also with this type of cancer the risk of recurrence after 5 years is really small – I think she said less than 1% … but my chemo brain may have supplied that number.

I asked her what I can DO to decrease chances of recurrence, and she told me about a fairly big study that showed that women with triple negative cancer reduced recurrence risk by 42% with a combo of a low fat diet and 30+ minutes per day of exercise. (Chlebowski RT, Blackburn GL, Elashoff RE, et al. Dietary fat reduction in postmenopausal women with primary breast cancer: phase III Women’s Intervention Nutrition Study (WINS). J Clin Oncol. 2005;23(16S):10.) Wow! So I’m working on doing the low-fat thing. And I plan to go back to boot camp when summer session starts on June 17! Maybe this blog will morph into a blog about the low-fat and exercise life… or not.

Yummmm… carrots, bell peppers, and spinach were all on the menu this past week

Poop report: I’ve been eating a lot more fruits and veggies in the last week, so OH BOY … I’m not going to describe the pooping, but you can probably guess, LOL! (and no photos either, haha!)

I’ve been back at work full time, scanning kiddos and doing my administrative stuff. I find it energizing to be with people and to be doing the work that I love. Maybe I am a little tired at the end of the day – my first clue is that I’m not having ANY trouble falling asleep. Still, I’d rather be tired by a good hard day at work than by weird meds in me.

Oh and one more fun tidbit before I sign off… I went to the ophthalmologist earlier this week for my yearly eye exam. My eyes are great – barely any change. … AND she can see the starts of lots of tiny eyelashes! She says that in about two months I’ll be back to normal, eyelash-wise.

Now that the weather has warmed up, I’ve changed from cozy knit hats to bandanas. I found a reasonable variety at Big 5. So here I am, looking like a cancer patient, and feeling really great!

The Mountain Lion in Your Fridge

Today I am sharing “Cancer: The Mountain Lion in Your Fridge” which I read on another cancer patient’s blog (https://wordpress.com/read/feeds/94986028 – wyde1340). I read it and thought: Wow, so much of this is so very true – even though my own experience has not been quite as dramatic. I did some Google searching and it seems to be written by SomeHedgeHog (https://somehedgehog.tumblr.com/post/119415185391/cancer-the-mountain-lion-in-your-fridge). Here it is….

What’s it like to go through cancer treatment? It’s something like this: one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.

Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!

So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion – “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” – and you really appreciate the support, but the mountain lion is still coming.

Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy – they’re half grown and only have three legs or whatever, and you think to yourself – why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that – and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

Finally, the person closest to you, whose job it is to take care of you – maybe a parent or sibling or best friend or, in my case, my husband – comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE,” and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he’s bought you some time, but you still need to get to the top of the mountain.

Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”

Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.

Maybe. You’re not sure – it fell off the cliff, but mountain lions are crafty. It could come back at any moment.

And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”
Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “fuck this mountain, I never wanted to climb it in the first place.”

No matter the size of the mountain lion – every cancer patient has to outrun it, has to hope the bear will kill it, and has that niggling fear that the crafty mountain lion might not really be dead. My mountain lion was one of the smaller ones, fortunately. But I still had to have the bear’s “help” to defeat it.

Meanwhile, I feel like I have more energy every day. I have white fuzz on the sides of my head, with very little hair on top (looking kind of like my dad). And I’ve been getting so antsy to get on with life! My 4 week post-chemo follow up appointment with my oncologist is this coming Wednesday – I’ll post an update after that.

Showing off my fuzz!

Evening view from our living room

How ARE you?

I’m fine, thanks. Well… I’m fine considering what my body has been through. I’ve done 20 weeks of chemo and now I’m on the recovering side of things. I’d like to feel like I did last fall – but it’s going to take some time for my body to recover from the chemo, and from the inactivity. These are the things that I’m dealing with now:

PERIPHERAL NEUROPATHY: My fingertips have some loss of sensitivity and are tender when I try to open my pudding cup. And my fingernails are ugly AND tender… items that require fingernails to open (like the mustard, or a pop can, or the Tylenol) usually end up being opened by Kevin. My feet are tingly/numb, with tender toes and toenails. I was telling Kevin that my feet feel like I walked 20,000 steps yesterday – but they feel like that every day.

TAXOL RASH: The backs of my hands and the soles of my feet have a rash from the Taxol. This rash is raised red bumps that itch like crazy when warm, but not when cold.

Taxol rash – also the skin on my knuckles is thick and kind of hard… is this part of the rash? I don’t know.

So I haven’t been wearing socks much, because that keeps my feet cold and relatively itch-free. Benadryl cream also helps. BUT if I walk very much (like when I take a trip to the grocery store or library) then my feet get hot and my rash itches. How am I supposed to get back in shape with my feet doing this? I haven’t walked around the block in weeks because of this problem… which leads to…

WEAKNESS: I am SO VERY out of shape!!! I especially notice this when I am going down stairs. My muscles are not used to doing much with all the sitting around and resting I’ve been doing! It is going to take a while to build these muscles back up! I can’t wait to return to boot camp… maybe in June?! But at boot camp I’ll be walking a lot and resting a lot and having to remind myself that the only one I should compare myself to is me.

FATIGUE: which is different than weakness… I’m still tired a lot. I’ll have energy in the morning and do stuff, and then rest all afternoon. I THINK that I’m not as fatigued at the end of the day as I was last week, but it’s difficult to measure. I expect that the fatigue factor is going to improve in such a gradual way that I won’t really notice until suddenly I realize that I’m okay.

HAIR LOSS: I have 7 upper eyelashes on my right eye and 4 on my left. I have zero lower eyelashes on my right eye and 1 on my left. That was the eyelash inventory last night… so I’ve continued to lose eyelashes, and eyebrows. BUT meanwhile, I have fuzz on my head! Why am I losing hair on my eyelids and growing hair on my head?? The fuzz appears to be mostly white, with a sprinkling of darker hairs. In some places the fuzz is actually long enough that I can pull on it with my fingers. With this warmer weather I’ve been going hatless indoors most of the time, and wearing a baseball cap when I go out.

a little fuzz!

So that’s what I’m dealing with. I’ve been SO lucky… neither Kevin nor I have gotten sick over the last 20 weeks… not even the sniffles! And my side-effects, while annoying, have been relatively mild. BUT I’m looking forward to getting beyond the fatigue and neuropathy effects of the chemo. I’m looking forward to building my strength back up. I’m looking forward to getting out and being around family, friends, coworkers, and patients!

I’ve probably told you this already, but I have my 4-weeks-post-chemo appointment with my oncologist on May 29, where they will draw labs and, hopefully, declare my counts back to normal. If so, then we’ll schedule my port removal surgery, and my oncologist will say: See you in 6 months!

A Chemo Day in Pictures

3 or 4 weeks ago I took a bunch of pictures of my typical chemo day. I had every intention of posting “A Chemo Day in Pictures” sooner than this, but it didn’t happen. So now that I’m finished with chemo – here it is… Tah Dah!

Then, I received my pre-chemo meds which make me sleepy and I neglected to take any more pictures for the rest of the day. Sorry. You don’t get to see me eat lunch, nap, eat supper, water the plants, brush teeth, and go to bed early.

But there you have it… a typical day leading up to chemo. I’m done with the chemo now, but I figured since I took the pictures I might as well share them. I’ll do a separate post with “post-chemo” news and pictures… maybe later today, or tomorrow.

Almost There

Nearly 7 years ago I completed the San Diego Rock N Roll Marathon. Yep… 26.2 miles in a mere 6 hours 32 minutes… Of course my tongue is firmly planted in my cheek – that’s a long time for a marathon and I was near the last of the people to finish. But I DID finish. It made me crazy, though, when spectators tried to cheer me up by shouting “You’re almost there!” when I was at mile 17, or 20, 0r 25.7…. even half a mile is a long way when you can’t see the finish line.

Yep – I really did do 26.2 miles

So here I am… two weeks and one day out from my last chemo treatment, and my fan club is telling me “You’re almost there!”. Seriously, I DO appreciate the intent to encourage and celebrate. But I am not ready to celebrate until I am DONE. I’ve been through weeks of treatment, and fatigue, and not feeling good, and weirdness, BUT I still have 3 more treatments, and I’m tired. And that tiredness will not magically disappear on April 29th. It’s going to take some time yet, sigh.

This is how I look when I’m getting my chemo. It makes me so happy that NorthStar has a blanket warmer and that the volunteers replace my blanket with a nice warm one as often as I want.

I’m tired of being tired!! I know, mentally, that the end is near. I know I only have about a mile to go. But when my feet hurt** and my hands itch and I’m tired day in and day out, it feels like “normal” is a loooong way off still.
(**side note about these feet… over the last week the soles of my feet have started getting numb and tingly – especially later in the day (apparently this is another not-uncommon side-effect of Taxol). This, combined with a Taxol rash that makes them itchy, is really really really annoying!)

So here’s my plan… I will take it one day/hour/minute/step at a time. I probably won’t be running on this last mile, or even slogging (slog = slow jog). I’ll walk. Slowly. But I will get there. I will finish. And I will feel better. It will just take time. You can cheer me on with “you can DO this” “keep on truckin'” “looking good” – But please no more “you’re almost there” – because I won’t feel like I’m almost there until I’m stepping over the finish line.

Walking across the finish line
I did it before, and I’ll do it again…
I’ll dance when this marathon is over.