Decemberists!

On November 19th, before even discovering the lump in my breast, I ordered tickets to see The Decemberists in concert.  My friends Margaret and Tim introduced me to The Decemberists, and they became the soundtrack by which I wrote my prelims for my doctoral degree.  Since that time, I patiently waited until they toured and came to Milwaukee, so I was beyond excited when they released a new album and began a new tour, with a Milwaukee stop.  

I knew I'd be in the midst of chemo when the concert arrived, and was afraid I wouldn't be able to attend.  The concert became somewhat of a symbol of me continuing on with my life and not letting cancer interrupt it too much.  Therefore, when I caught a cold this last weekend, I was very worried that it would screw up my plans.

Luckily, this was an off-week for chemo, and so I stayed home all day Wednesday, napping and keeping hydrated.  My temperature stayed in the 99's all day and I got a reluctant go-ahead from the nurse to drug myself up and attend.  Thanks to Dayquil and a Mountain Dew Kickstart, I was off!

We had a fun dinner at Cubanita's, and then the concert.  Opening act Alvvays was pretty good, and The Decemberists were AWESOME!

They played a lot from the new album (which I like), although not all the songs I would have liked to hear.  And they did a great job dipping back into the older stuff. "The Crane Wife 3" and "The Island" were really good, but I think my favorite section was what they called the dark section of the concert where they played "The Wanting Comes in Waves," "Repaid," and "The Rake's Song" from "The Hazards of Love."

It was completely worth drugging myself up.  :)

~~~~~

Thursday was a bit rough.  I woke up with a fever again, so worked from home in the morning to make sure things didn't get any worse.  I did make it in for the afternoon, although that's when my cough appeared, too.  

Thursday night was truly awful, but my fever broke overnight and I think I can safely say (fingers crossed) that this is now just a cold.  I actually sound much worse, as my voice is laryngitis-y and I'm coughing a lot, but I feel much much better.  Best of all, no fever!

~~~~~

And better yet, Cara is home for her spring break.  She came home with a cold, too, but after some good sleep, she's on the mend, too.  Yesterday was her 20th birthday, and I spend time alternating between wondering where the last 20 years went, and not being able to imagine my life before she was in it.  We have lots of plans for this week while she's home.

Sick.

I had somehow managed to make it through most of the winter without getting sick (Well, other than that pesky cancer sickness, that is).  So I was unpleasantly surprised to find that I'd succumbed to some virus this weekend.  I was still somewhat in denial, thinking it was just chemo yuckies until yesterday at work.  I actually considered closing my office door and curling up in a ball on the hard floor to nap for even ten minutes.  By the time I got home, I could barely crawl up the stairs and fall into bed, I was so tired.  And then the chills came, and the cough, and runny nose.  Ugh, ugh, ugh!

Today I drugged myself up with DayQuil and made it to work.  And I'm glad I did!  I love tutoring--being able to work one-on-one with the students.  And my steroid-induced hunger was quite appeased by the GOBS of snack foods around for a going-away party.  Best of all, working a 5 hour day is much easier than a 9 hour day.

I'm still feeling pretty crappy, with a runny nose, sore and swollen throat, cough, and general exhaustion, but I'm hoping this is a relatively minor cold.  I'm not sure what the whole immuno-compromised chemo thing will do to the duration (and the effect) of this cold, but I do know to watch for a fever over 100 as a sign of infection.  I'm planning to rest and sleep it off as best I can. Wednesdays are my chemo days, and since I had chemo last week, tomorrow is a completely free day off!  Better yet, it's Greg's Spring Break week, so he'll be home to wait on me.  :)

~~~~~
On the (mostly) bright side, I saw Dr. Sterkin this afternoon and finally was able to be expanded!  Hooray, I kinda almost have breasts again.  :)   I say "mostly" bright side because <whine, whine> now I have chest pain/pressure once more.  But it's okay, really.  I'm excited to try out the new breasts wearing something girly to go to The Decemberists concert tomorrow night.  Yay for date night!

For now, however, I'm going to curl up in bed and catch up on Sister Wives.

And it's gone

From the time I was diagnosed, I joked about losing my hair.  Bright side of breast cancer treatment?  New, perkier breasts and possibly new, less-gray, maybe curly hair afterwards.  :)  I did not think it would bother me in the least--especially since the hair loss is just temporary.

So I was surprised that it hit me harder than I'd expected.  I'd assumed that as soon as the hair loss was apparent, I'd shave my head and get it all over with.  But as some of the hair started to drop (on Thursday and Friday), I found myself clinging to what was left, and wondering if I'd be one of the people whose hair just got thinner and didn't leave entirely.  However, yesterday, as I sat in the backyard, tugging at my hair to stop the itching, I realized that wasn't going to be the case.  

As I tried to find the silver lining in this latest stop on the breast cancer express, I came up with this:  I'd actually been a bit concerned that the chemo wasn't doing anything.  I was expecting horrible side effects and a miserable couple of months (which I realize could still happen), but I'd only had some minor ickiness and blocks of time feeling bad.  This--the hair loss--is indisputable proof that the chemo is going in, coursing through my veins, and affecting the fast-growing cells as it should.  This is good.  This is comforting.

Then this morning in the shower, I looked down to see a pile at my feet.  And when my hair dried after the shower, there was an awful lot of scalp showing.  Definitely time to go.

So Greg put on some Sinead O'Connor, and shaved my head.  

I'm not quite ready for the bald-reveal yet--at least not on the internets.  I'm sure I'll get there in time.  For now, I guess I'm happy that it's cold enough that I'll want to wear a hat or scarf. My dear friend Katie, a cancer and chemo survivor herself, gave me the gift of a wonderfully warm, soft hat made by Turtle Fur, and that's what I'm rockin' for now.

~~~~~

My appetite is still pretty good.  The hardest thing is keeping hydrated, because I've just never been one to drink much (alcoholic or non-alcoholic!  LOL).  So I end up eating soups, as they are comforting, nutrient-rich, and hydrating.  I bought another giant pack of bone-in chicken thighs yesterday and made another double batch of bone broth per the recipe in The Cancer Fighting Kitchen.  Popsicles are a good fall-back, too.  I've also stocked up on fresh fruits and veggies so when the steroid food rage hits this time, I will try to eat less calorie-dense foods.  

Today I found out that just cooking was about as good as actually eating.  I made all sorts of stuff:  Crockpot pork and gravy, nokedli, and broccoli cauliflower casserole plus berry crisp for supper tonight.  It felt good to be in the kitchen!

~~~~~

And I'd not posted our choice of binge-watching TV since completing Buffy.  We will eventually move on to watch Angel, but needed a break from that.  So we watched Transparent.  And I really enjoyed it!  We're open to suggestions for other binge-watching.  We have Amazon Prime--not Netflix.  I also want to go back and re-watch Big Love again since it's been years since the last time.

Hair today. Gone tomorrow?

Although I'd heard from "everyone" that your hair starts to fall out right after your second chemo infusion, it hadn't really dawned on me until Tuesday that this week was my second infusion!  So I spent some time looking up YouTube videos on how to tie headscarves, and practiced with what I had.  I then went shopping and picked up a few more scarves that I think will work better than the ones I already owned (yay for end-of-season clearance sales and mall gift cards!).  At chemo, one of the nurses also shared a basket of homemade hats that were donated.  Most were knit or crocheted, but there was a cute scarf-like one that I took to try out.  She also told me to really consider getting a wig "if I want to go out to dinner or something."  Not sure how I should take that--am I not expected to wear a scarf or go bald in public?

Anyway, when I started to think about it, I realized that for the last week, my hair had stopped growing (yay for not shaving!).  And then when I looked closer, I realized that my body hair was falling out and my arms and legs were much smoother.  But still not the hair on my head.  I know it's only a matter of time, though, as the stray gray hairs on my head are getting much easier to pull out. So this might be my last selfie with hair for awhile.

I noticed on Tuesday that I was beginning to get a cold.  Because I'm taking Claritin to counteract the bone aches due to Neulasta, I knew it wasn't allergies.  So I really don't know if the yuckiness I'm feeling is chemo-related or cold-related.  Probably a little of each.  I definitely feel a lot fuzzier and foggier in the head.  Again, not sure if it's lack of sleep (didn't sleep much last night) or chemo stuff, but I'm slow to process things and find the words I need.  I couldn't think of Joss Whedon's name yesterday!  

I am happy with my chemo schedule--choosing to have treatments on Wednesdays and work only half a day on Friday, and then have the weekend to recover has been a great fit so far.  Here's hoping I have enough energy to run again this weekend, as the weather should be pretty nice again.

Two down!

That's two down, 14 to go!  :)

I started the day with a run in beautiful, sunny 40 degree weather.  I was doing pretty good for my first mile, too.  And as I was turning around to head back, another runner who I think I recognize as a WFB mom, goaded persuaded me to keep going. So I ran about another quarter mile with her until I couldn't do it and turned around.  End result: 1.9 miles in 22:23 minutes and energy to get me through the rest of the day.

Travis was my chemo companion today, and the poor guy was subject to every person at the Cancer Center saying they could certainly tell that he was my son.  I don't know--I just don't see it ;)

Perhaps funnier yet was Dr. Shah's surprise that he's only 16 years old.  She thought he was home from college.  He was a great sport and we managed to get four games of cribbage in, although we had to squeeze onto the little pop-up shelf on the recliner.

My blood counts had rebounded nicely!  I guess the Neulasta really works.

Hemoglobin 10.5 gm/dL
Platelet Count 105 thou/mcL
White Blood Cells 8.9 thou/mcL
(and I only gained 0.1 lb since last week)

This treatment (so far, at least) went almost exactly like the last one.  I got the same headache about 5 minutes from the end of the cytoxan infusion and it's still with me.  Tylenol dulled the pain a bit, but I didn't feel quite well enough to drive an hour and a half to pick out Mira's new crested gecko, so Greg drove and I went along for the ride.  Meet Taiyoko-Sen (means "sun beam," which s/he kind of looks like):

So all is well here and I joyfully ripped off the second purple link from the chemo chain.

Ways to support cancer research (money not required)

I won't get into the politics surrounding Susan Komen and all the Breast Cancer Awareness campaigns, as there is plenty to read and make your own decisions about. And there is no doubt that because breast cancer is one of the "sexy" cancers, it draws a lot of donation money, and therefore is relatively well-funded in terms of research.  While doing Scientific research for my own PhD, one of the areas our lab focused on was cancer research, and I saw first-hand how difficult it is to obtain government funding for this very important job.  The best thing that I think people who want to help "find a cure for cancer" can do is to make their voice heard by the government when funding decisions are made.  

The National Institutes of Health (NIH) is the largest source of funding for medical research in the world.  But since 2010, Federal funding of the NIH has decreased.  Adding in the impact of inflation, the NIH director Francis Collins says that, "The NIH once funded one in three research proposals. For the past 10 years, NIH has had enough to fund only one in six, although the quality of the research is as high as ever."  Please, please, contact your elected officials and let them know how important you think research funding is.  And if you don't know who your elected officials, are, click here for just one online source.  Input your zip code and it returns information and links to webpages and emails for all your representatives.

Unfortunately, government funding is not enough.  There are undoubtedly many noble cancer support groups that do things right--which I would define as putting money into actual research and not just awareness.  I will mention two here.

The first is a breast cancer-specific one that I joined years ago--the Dr. Susan Love Research Foundation.   If you join the Army of Women, you can fill out forms to be an actual research participant--whether you have/had breast cancer, or want to serve as a control (w/o breast cancer).  You can do this with no financial investment (although they also take donations).  And you can fill out as many surveys to qualify as you have time.  One of the neatest projects they are working on is the Health of Women Study.  Contrary to the name, they're looking for men (with and w/o breast cancer) as well as women.  This is near and dear to me because the description reads, "The majority of women who get breast cancer have none of the known clinical risk factors. This means we don’t know what causes breast cancer or how to prevent it. The HOW Study is a first-of-its-kind international online study for women and men with and without a history of breast cancer.  We will collect information about your health, your job, your diet, and your family history, among other topics that can help us get a better understanding of breast cancer and its potential causes.  Periodically, we will send you questionnaires about anything and everything. All you have to do is fill them out online. It’s that simple. This is a partnership and we need you for the long haul. The more questionnaires you fill out, the more information we will have that can help us have a better understanding of why women get breast cancer."

The other organization that I think does great things is the American Cancer Society.  In addition to funding cancer research, ACS supports patients and survivors in numerous ways.  I have seen firsthand many of the things that ACS does for survivors.  My first medical appointment following my diagnosis included a visit from an ACS Navigator who shared with me things that ACS provides, including rides to and from treatment if you don't have that support, the Look Good, Feel Better program, which I will be attending next month, and much evidence-based support and information.  Cara is doing the ACS's "Relay for Life" at Hamline University this year.  If you are considering donating to the ACS, please use this link to give directly to Cara's team.  You can even purchase a personalized luminaria in honor or in memory of a loved one who has had cancer.

I have benefitted greatly from research done before my diagnosis in 2014.  My hope is to continue to support research so that my children (and their peers) don't have to worry about cancer.

Nadir

Today was my one week follow-up appointment with Dr. Shah (medical oncologist), to see how my body is tolerating the chemo.  One week is the beginning of the period known as nadir, which directly translates to "the lowest point."  In this case, it means the lowest point in blood cell counts.  And my counts are definitely in nadir!  Dr. Shah called my white blood cells "low" (1.8K), said my platelets are 34K, and my hemoglobin is back down to 9.5.  BUT despite those measures, she was not concerned.  She said that it appears that my body is tolerating the chemotherapy well.  I just have to watch for fever, body aches, etc. as my immunity is definitely suppressed.  She stressed being careful with interactions with other people, especially avoiding sick people, shaking hands, kissing, etc.  And I also need to be very aware of any bleeding since my platelets ARE low.  She told me to expect the exhaustion to build as treatments continue, but that the other side-effects shouldn't get much worse.  

Of course, as soon as I posted that I didn't have any side-effects, I started to get some!  :)  Nothing too terrible yet.  Mostly exhaustion that just appears, some stomach upset, and I finally realized that the taste of blood in my mouth was likely the metallic taste that comes with chemo.  Perhaps the most disconcerting one come from the steroids.  EAT ALL THE FOOD ALL THE TIME!!!  For two whole days I think I ate around the clock. And it wasn't just like I was nibbling on things--I was starving the entire day.  At my appointment today, I'd gained six pounds since last week.  That cannot continue happening.  Luckily, I only take 3 days of steroids and only following the first four rounds of chemo.  Already today I have switched to feeling "hungry" and not "ravenous."  Still, I cannot gain 6 pounds four times.  UGH!

I've also set up my next chemo treatment for Wednesday at 1:00, so I need to get going on that Excel spreadsheet of friends to take me.  It's the younger kids' Spring Break, so I have to decide whether to make both of them come along, or just Travis... :)  Either way, I see cribbage in my future.

~~~~~

The other big thing that happened since my last post is that Greg and I finished watching Buffy the Vampire Slayer.  I'm still processing the ending.  The cool thing is that we didn't realize it at the time, but we actually watched final episode on the 18th anniversary of the airing of the first episode.  I love Joss Whedon...

Recovery cardigan complete!

I'm somewhat worried about posting a post-chemo update, as I fear that doing so will bring on ALL THE SIDE EFFECTS as soon as I mention that I really haven't had many.  But here goes with the jinx...

Overall, I've been amazingly pleasantly surprised at how little I've been affected so far.  I do know that the effects build and so it's not like I will sail through this, but so far, so good.

I had that nagging sinus-y headache that started during the cytoxan infusion and lasted through most of the next day.  But I took some Advil and that brought it under control.  (Also realized I probably should not be taking Advil when I'm on so many things that decrease my blood counts--will try Tylenol next time)

The Claritin seems to be helping me to avoid bone pain following the Neulasta shot, too.  It's pretty impressive, actually.

I've been kinda tired, but also had trouble sleeping.  The first night I woke up every hour until I gave up and got "up" at 4:00 am.  The next two nights I was really tired after work and didn't have much energy to do anything that required brain power, but I had a tough time falling asleep.  Last night I felt wired at bedtime (maybe because I took the steroid a little later?) but once I fell asleep, I slept through till 5:30 with no waking.

I've had a little nausea-kinda stuff, but not bad, and honestly I think it's because of all the other meds I'm taking to avoid side effects.  It's not been the icky, pukey nausea--just gurgly tummy, which is easily manageable.

Really, the worse thing I've noticed is that I just feel kinda fuzzy--like it takes my brain awhile longer to process things, and I'm struggling for some words.  Seems a bit early for chemo brain to kick in, so I'm thinking it might be some combination of the meds.  I finished the steroids this afternoon and only two more days of the Zofran, so hope to have things cleared out and back to normal soon.  

I'm also up to 32 medical appointments since November 25th.  And the bills are all coming in--so thankful that our insurance (at least so far) seems to be very good about covering things.  No doubt we'll hit our deductible for both 2014 and 2015.

~~~~~

I was thrilled to have temps in the 40's today, combined with the clearance to run again, and desire to get some energy, so I went for my first post-surgery run.  The last time I'd run was 1/7/15 so it was exactly 2 months since then.  I only made it 2 miles and didn't run the entire time (at least 75% of it, though) and it took me almost 27 minutes, but it FELT GREAT!

~~~~~

BUT the main reason for this post is to share that my recovery cardigan is DONE!!!  Despite the glitch of running out of Cilantro yarn, and not knowing how to seam the striped parts (thanks to my friend Emily who showed me the amazing mattress stitch--wow!), I was able to finish this week and have spent an inordinate amount of time weaving in ends.  I still want to block it so that the collar lies a bit better.  It weighs a ton (3.6 lbs.) and is super thick and warm, so you can all thank me for bringing the warm temps to Wisconsin (but please don't blame me for not completing it sooner).    Greg sings songs from "Joseph and the Amazing Technicolor Dreamcoat" whenever he sees it...

One down!

Today was a long day at Water Tower Medical Commons.  I feel like my brain is tired, so I apologize for disjointed thoughts in this post.

The day started with OT and Audrey was pleased and surprised to learn that the cord released, and when she took ROM measurements, I'd exceeded all the goals she'd initially set for me, so she discharged me.  One more thing to cross off the list!

I then had blood drawn (using the port-a-cath--yay!) and my blood work came back all good (platelets 107K; hemoglobin up to 10.5) so was cleared to start chemo.

I was lucky enough to have two amazing people accompany me on this first chemo experience.   Greg started the day, even canceling his office hours so he could be there through the appointment with Dr. Shah.

When Greg had to leave, my dear friend Chelsea came to sit with me.  I love that she's as fascinated with the whole experience as I am, asking questions of the nurses just like I always do!  And I was able to catch up with her on all sorts of things in her life, too.  It was just what I needed.

The funniest thing happened when I was having my blood drawn initially.  The nurse noted that my port-a-cath was located rather low, and commented about another patient she had whose port-a-cath was even lower.  She raved about what a wonderful person this woman was and said that she hoped I'd get to meet her sometime as she always made the nurse smile.  So as I was being infused, my friend Lisa stopped by, as she had just been getting radiation downstairs.  Lisa is the friend I mentioned who has the same diagnosis, most of the same doctors, and is roughly 6 months ahead of me in treatment.  So we're chatting and the nurse comes over and says, "oh, you've met Lisa.  She's the one I was telling you about!"  Such a small world.  And so cool to have a surprise visit.


The infusions began with pre-chemo meds (steroids and anti-nausea meds), and I felt nothing odd other than the metallic taste when the port was flushed before and between meds.  Next the obnoxiously red adriamycin was given by IV injection into the port.  I guess that's because it's a vesicant, so they have to be extra careful and watch it all go in.  To be safe and hopefully avoid mouth sores (although Dr. Shah said there is no evidence that it helps), I sucked on ice the whole time it was injected.  Finally I got the Cytoxan by IV drip.  I couldn't explain what exactly it made me feel like, but there was definitely a feeling of something being "off" while not being bad enough to even mention to the nurse. As she was disconnecting me from the IV, she ran down a list of common side effects (dizzy? tired? queasy?) and then got to "burning feeling in your nasal passageway" and I said, "YES!"  It was kind of a strange, sorta sinus-but-not-really-sinus headache.  Unfortunately, it's still there, combined with some tiredness (likely because I didn't sleep well last night).  I think I'll be taking it easy tonight, maybe knitting and watching some Buffy.

Speaking of Buffy, I don't think I've mentioned that I've decided to use Buffy the Vampire Slayer as my visualization.  Because I'm trained as a Scientist, I don't have much belief in many of the alternative medicines--especially those that could potentially interfere with allopathic meds.  But there are some that I believe cannot cause harm, and they allow me a bit of feeling in control.  The ice during adriamycin is one.  The other is the use of visualization.  I was first taught this technique as a child by my parents.  They taught my brother and I to "wish the warts away" and I remember my dad explaining the immune system to us, and how we could imagine it attacking the virus that caused our warts, and the phagocytes clearing the destroyed wart away.  Many cancer patients visualize the chemotherapy as PacMan, eating the cancer cells.  Greg and I started watching "Buffy the Vampire Slayer" on Amazon Prime right around the time of my diagnosis (we're in the last season now), and I woke up in the middle of the night, early after diagnosis, with the idea that the chemo is like Buffy and her team of friends, and the cancer cells are like vampires.  I love the idea of the two wrestling, but the chemo eventually staking the cancer cells, which dissolve into dust.

I was sent home with prescriptions for three meds (Zofran 2x/day for 5 days, Decadron 2x/day for 3 days, and Compazine as needed) and over-the-counter things to buy to counteract side-effects from the meds given to counteract the side-effects of the chemo.  UGH!  I'll be going in tomorrow morning to get my first Neulasta shot, so have been taking Claritin to help with *those* side-effects.  Oh, the meds...

Mira had made me a paper chain to count down my treatments, with 4 big purple links for the AC's and 12 thinner green links for the TH's.  It was pretty nice to be able to RIP that first purple link!

Recovery continues

Moving right along...

Today's been a great healing day.  As I've previously complained about (here and here and here and here), I have the never-ending cording issue in my right armpit.  My OT, Audrey, told me last week that I had won the award for most persistent cording she's ever worked with.  Yay, me!    Cording is a build-up of lymphatics that presents as (of course) a cord.  Audrey said that it usually gradually improves, but sometimes she's heard of it just releasing and that it's not painful or dangerous when it releases--it's just a rare occurrence    So I've been doing my stretches and exercises and massages religiously, and it seemed like the cording was getting a little less intense, but it was hard to tell. This morning I was getting ready for work when I reached down and felt/heard a snap.  I instantly felt my right armpit and yay! it appears that the main cord released.  I actually had about four cords in the same area, so it's not 100% better, but it is so very much better that I nearly cried.

This afternoon I had another appointment with the plastic surgeon and he removed the stitches from the repair surgery and said I'm healing wonderfully.  I am clear (as long as my blood counts are fine) to start chemo tomorrow!

~~~~~

Finally, I've had some time to work on the recovery cardigan since I've been home a lot.  There's good and bad news about it.  The good news is that I'm done with ALL the knitting and just need to do some sewing of seams and LOTS of weaving in ends before I can wear it.  The bad news is that the pattern was inaccurate in the amount of yarn needed.  The last thing you knit is the collar, which stretches the entire length of the below-the-knee cardigan. And I ran out of one of the four colors needed for the stripes on the collar.  What's more annoying, I have two entire skeins of other colors that were extra.  I'm not very happy with Lion Brand Yarn right now, because even if I had gone to buy more of that particular color (it's "cilantro" in case anyone is curious), it would not be the same dye lot and would likely look even worse.  So I remedied it by knitting half as many rows of "cilantro" as all the other colors in the collar.  It remains to be seen how it all ends up looking, but I also wrote Lion Brand Yarn an email, explaining my utter disappointment after all the time invested in this project.