Friday, June 28, 2013

Through the Fog

Here I am in another "good week." It is week 3 of round 4 out of 6. The end is in sight! Hallelujah! I will say, I think my bad week was a little worse this time, but maybe that's because I just laid around and waited for it to happen to me. Or maybe I am impatient to get this whole thing over with. I am extremely thankful that I only have two more rounds to go. But none would be better.

Everyone complains when we get to this point in the summer- that it feels like it just started, and it's almost over. This is one summer I will be glad to see the end of! 

Wednesday was a hot day, so I took the kids to the pool. My kids are strong swimmers, and my M-O is to kick back and alternately read a book or nap poolside. I discovered a problem yesterday. My wig is hot! I went and dipped in the pool a couple of times, but really I just wanted to submerge completely. It turns out, I can't go hairless in public. Don't get me wrong, I love not having to shave my legs, but a bald head in public just doesn't work for me. I've actually thought about just taking a bath with my wig on to see what it would look like, but as I really think about it, the chlorine would probably be pretty damaging.

This is all quite ironic, because for years I have avoided getting my hair wet in the pool so I could keep it safe from the damaging chlorine. Now the only thing I want to do at the pool is get my hair wet! Never satisfied, I tell ya!

Here's another thing I can't do- pull a hat down over my ears. Unless it's a cloche or a bucket hat. But those deep caps that are supposed to come down over your ears to hide your baldness? It just feels weird. And wear a top that shows my weird port scar. I can't do that either. Ick.

Of course, all of this is my own personal opinion, and I'm sure there's some deep-seated emotional problem that allows me to talk about this on the Internet, and even post bald pictures of myself, but won't allow me to walk to the mailbox without a wig on. Some women rock the bald look, wearing it proudly like a badge of honor. I just can't. Call me insecure.

And while I'm ranting about my bald head. I have noticed something. If I look really, really close in the bathroom mirror, I have about 3% of my hair that is still growing. It's about a quarter of an inch long, and guess what. It's all white. No, not really light blonde. White. Maybe it's actually transparent and that's why it's so hard to see. Also, if I can get a grip on it with my fingers, I can pluck it right out. Doesn't have much stay power, but seriously? The only hair that continues to grow is the gray?!  Weird.

OK, so I had a point when I started writing this post. I was going to talk about the gamut of emotions (or lack thereof) that I go through on a "first weekend." I never feel like writing then, though I usually clear my calendar so I have plenty of time.  I just jotted down some notes, so that I could come back and write it out when I felt better.

Things that I can do ahead of time:
I am very fortunate that my "yucky" days are predictable. Those who struggle with depression or Lupus never know when they are going to have a flare, and can't be prepared for them. I have determined that chemo days are similar to, but not as bad as, these conditions. I loose my energy, don't feel great, but mostly it's that my energy and emotions just shut down. Friends who suffer from these diseases, I salute you.

These are things I can prepare ahead of time (whether I will or not is always a pot-shot) to help my rough days go smoother.

  1. Start with a clean house. If you have ever visited my house once, it was probably clean. The kind of clean that makes the kids wonder who is coming over. If you have visited more than once, you probably know that I am a little lazy in the housekeeping department. The last round of chemo happened right after we had our new carpet installed, and everything was put back in place, the piles of junk had been sorted through and mostly eradicated, and there was in general a nice, fresh feeling about our home. While I was not feeling my best, this was a nice thing to look out at and see. Just made me feel a little more peaceful.
  2. Prepare food ahead of time. I got all the grocery shopping done, prepared some freezer meals, and had plans for people to bring us meals for a few days. This was good, because I didn't want to make dinner any of those nights, but everyone in the house (including me) wanted to eat. How obnoxious of them. I also had some easy, healthy snacks on hand. Homemade granola bars, fresh fruit, homemade popsicles, yogurt, cheese sticks, etc. These all came in handy for the kids as well as me.
  3. Make plans for the kids. It is really nice to have something for the kids to do while I watch episode after episode of "30 Rock" on Netflix. They both had sleepovers at friends' houses, and someone to play with most every day of my blackout.
  4. Make an entertainment stockpile. Go to the library and check out some books, we started a Netflix account this month, get all the laundry done ahead of time, make plans to exercise with a friend on the worst days. 
  5. Prepare, prepare, prepare, then relax & clean up later. It took me a little longer than usual to come out of the fog this time, but eventually, I got around to cleaning up after myself. I have to say here that my husband is an absolute saint and treats me like a princess on these dark days, so I'm a pretty lucky girl.
The dark days are here...
This is my experience. And if there is one thing I've learned about cancer, it's that everyone's experience is different, and everyone's experience is valid. I have a tendency to gloss over the yucky stuff in life, and when I feel good, pretend that I always feel good. But the truth is, I don't feel great for a few days each cycle. I have decided to call this my "blackout." It only lasts 3 days, and when I come out of it, I want to forget all about it. So this time around, I took notes so that I would remember how I felt. These are some things I wrote down.

Is this depression? I read this blog post about one woman's take on depression. (Seriously, go read it. I will wait). It really opened my eyes to what depression is like and as an extrovert and a "fixer," how annoying I must seem to those with it. Then I went through a blackout, and thought, "this must be a little bit like that." I have never had the misfortune to struggle with depression, and I count myself very fortunate in that. But if ever there was a question as to whether it is a chemical imbalance or not, I think this certainly answered it for me. After all, I just had $12,000 worth of chemicals dumped into my bloodstream, and now I can't feel.

The weekend after my first round of chemo I was worried that it would last the whole 18 weeks, and I thought, "I won't survive this!"  When I'm in a blackout,  I can't think, can't have a conversation, I forget words,  I can't remember anything, can't bring myself to care about anything, I can't make decisions and it is unsafe for me to drive. The whole thing drives me crazy. Or it would, if I had the energy to care.

Turn off the music! I am a musician. I love to sing, play instruments, listen to music and be surrounded by it. Usually. Not when I'm in a blackout. I can't stand it. I can't sing, play the piano, or listen to the radio or live music. It rattles around in my head like my cranium is lined with cement. I just want to plug my ears. This is especially problematic in that my treatments are on Thursdays, and my blackouts are then on Saturday, Sunday and Monday. I love the music at my church, but I can't handle it on bad weekends. Matt works at church, and leaves before 6 am every week. That leaves it up to me  to get the kids up, fed and out the door. Fortunately, we have an evening service, so I went to that this time, but going at a different time of day didn't help much. It does make my worship have a different focus. I am definitely humbled. I do a lot of sitting down and thinking (as much as I can) about the words to the songs because I don't have the strength to stand or the desire to sing. I am thankful that there is also an option to watch our services online, which I have done during a blackout before. 

Are these hot flashes or is the A/C broken? They tell me that they are suppressing my estrogen and this will kick me into "temporary menopause." I still don't know what that means, but my menstrual cycle has stopped (sorry for the TMI), and one night during my blackout, I kept getting hot. It might have had something to do with the temperature in the house being in the upper 70's that night. I adjusted the A/C, and haven't had a problem since! Haha!

My doctor says that my cycle may start up again after chemo, but because of the presence of estrogen receptors on my cancer cells, my treatment plan includes hormone replacement for 5-10 years with a daily pill called Tamoxifen. I just clicked on this link and read about that. awesome. 

Burn, baby, burn... The heartburn still seems to be the roughest side effect. I don't get any relief with drugs like Prevacid or Prilosec.  The best solution is still a swig of my apple cider vinegar/ honey/ water (1:1:1) mixture. Tastes awful, but alleviates the heartburn immediately. As mentioned in my previous post, acupuncture also helps a lot. 

I have not had problems with my plumbing on the other end of the system (to put it delicately) since the first go around, so that's good! The other real physical issue I've dealt with is the neuropathy in my hands and feet. They get all puffy and red, and sometimes tingly. This seems to come and go, which is annoying, but at least it's not permanent. I can still play the piano. I find that lifting heavy things is really hard on my hands, so I get out of a lot of work. 

Drinking water seems to be a real challenge during a blackout and for the week following. No matter how I dress it up- I've tried floating fruit in my water, or just splashing a little lime juice in it, but nothing makes me happy.  I just don't want to drink it, even though I know I need to flush the toxins out of my system. My mouth tastes yucky, and I just don't wanna. I finally broke my no sugar or artificial sweeteners rule, and made a pitcher of lemonade Koolaid with only a 1/4 cup of Truvia baking blend (1/2 Stevia, 1/2 sugar), and that hit the spot. Downed 3 glasses in rapid succession. Then I got a bellyache.  Maybe not the best idea I ever had! 

I have not gotten sick to my stomach from chemo yet. I am so thankful for this! My appetite continues to be strong, and while my tongue tastes like cardboard (about 2 weeks), I prefer zesty foods with a lot of flavor. HOWEVER, during a blackout, I will not make it myself. I sort of sit on the couch and wish someone would bring me food. Sometimes Matt reads my mind. Or at least asks if he can get me anything. Even if he doesn't ask, I often request things and he lovingly obliges. What a guy!

I find myself laying on the couch and either watching movies or reading books a lot. I look around and think of all the things I should be doing, but don't want to get up and do them. It's not that I don't have the strength. It feels more mental than physical. There's a lot of stubborn, "I don't wanna" running through my head, and somehow I let that voice be the loudest. 

Maybe I just need a good strong cup of coffee! (haha... just kidding. No caffeine in this girl's diet.) 

So what helps? I have been working through the Daniel study by Beth Moore with a group of ladies from my church, and it requires daily homework. This forces me to get into my Bible daily, and I sure do get a lot out of it when I do a study like this. If you have never had the joy of diving into a study by Beth Moore, whether you're a man or a woman, I strongly encourage it. I promise you will emerge wiser, more Spirit-filled, and more in love with the Lord.

I came away with this little gem from scripture last week. It occurs in the book of John before Jesus raises Lazarus from the dead.  
This sickness will not end in death. No, it is for God's glory, so that God's Son may be glorified through it.                  ~John 11:4

 And of course, my super hero of a husband is a huge help as well, as noted several times here. He is so sweet when I go through these blackouts, and exemplifies this scripture for me:
The greatest among you must become servant to all.     ~Mark 10:44
The best part about my blackouts is that I know when they will end. By Tuesday morning, I will awaken with a pep in my step once again. It did take me a few days to get back to doing anything this time around, and my tongue always feels like cardboard until about the following Tuesday, which makes it still really hard to drink enough water.

I have been chewed out multiple times for not getting my blog updated more frequently, because people don't know how I'm doing. I apologize for that! When I'm in a blackout, I have plenty of time, but no motivation. When I feel good, I sort of get maniacal about things and don't allow myself enough time to sit and write.

I am nearing the end of my 3rd week for this round, I feel great, and my weekend is packed. I had 3 opera performances over the last 2 days... (this is one of my favorite things to do all year long! I love doing children's opera)

Hallo! I'm Pinocchio!

There's trouble a-brewing!

Oh no! Lost Papa's pencil case!

We had a little children's chorus of puppets
(Maia is on the far right of this picture)

Uh oh! Caught lying!

Now Papa's really mad.

My wish being granted by the Blue Fairy!

The kids also got to be policemen

I got to sing with one of my students. 
This is Brittany, and she did a fabulous job!

I have a bassoon band rehearsal/ performance tomorrow afternoon and evening...

I'm not actually in this picture, but these are my homies. :)

and Sunday, I will be playing for all 3 morning services AND the evening service at church...

As you can see, stupid old cancer is not getting in the way of me doing the things I love. Two more rounds to go. The end is in sight.

My next blackout will be over the 4th of July holiday weekend. If you want to sign up to bring a meal, you can click on this link.  There are still a few spots left.  Thank you so much to everyone who has provided us with meals. It has been such a huge blessing!

I want to say a special thank you to my hometown church, the Sheldon Church of the Brethren, who sent us a substantial Hy-Vee gift card. It covered our groceries for a whole month! And our current and former small groups who got together and purchased a quarter share in a community agriculture group that delivers fresh veggies to our house every week.  We are so very blessed by these gifts. Thank you all so much for the gifts big and small!

This week's plan is to go in on Wednesday since Thursday is a holiday this week, so I will be done with the dark days one day earlier than usual, right? :)  And by the end of July, I'll be DONE with chemo! Wahoo! Counting the days!

Saturday, June 1, 2013

Alternative Therapies

3 down, 3 to go!

I made it through my third chemo treatment last week, and am on the upswing again.  Hooray!

I started a project, and I'm kind of making my family crazy, I'm afraid.  I decided to redecorate my bedroom. It was perfectly nice before, but I wanted a change. It started with paint colors, but soon involved new bedding, which I am sewing myself- because duh! You can't change the wall color and keep the same bedding! And then I decided I needed to make new window treatments- for the same reason. And of course, the adjoining bathroom had to change too... which means some major changes that I'd been hoping to make for a while- including painting the double vanity, framing in the big contractor's mirror, changing out the light fixtures, adding a built-in ironing board- which then of course needs a new outlet installed... you see how this could get out of hand.

The project got a jump start when we decided to install new carpet in the entire house. And while we're at it, better change the linoleum in the bathrooms and the entryway (This is my mom & step-dad's project. They actually own the duplex that we live in). That all starts on Monday, and I kind of wanted to get the walls painted before the new floors came in so I didn't muck up the new carpet.

I promise I will post pictures of all this, but right now, everything is in the "worse before it gets better" stage... Here's a tiny preview... but it's not done.

Here's a before pic of the bedroom

and the bathroom

And here's a start on the after pics... I'm not done yet.

I actually just painted the bathroom green today, 
hence the paint cans on the counter!

And then I accidentally started a small group. Well, a women's Bible study that meets at my house every Friday. It all started with me kind of wanting to mentor this former student/ current worship leader friend of mine. We started the Beth Moore "Daniel" study together and very quickly concluded that more people need to be involved in it. So now we have a group of 9 ladies meeting at my house on Fridays for the next 12 weeks.

Normally in the summers, I am wiped out from the frenzy of the school year. I take time to relax & recharge, get very little done, and spend a lot of time lounging by the pool. So why the sudden burst of activity? I've been trying to figure that out. My brain and my body won't slow down! I wake up every morning before 6 am (that is REALLY not like me), and I start thinking of all the things I can accomplish today.

This is what I've come up with. I think I'm a control freak. And I can't sit still. I need something to be in  control of, since I can't really control my disease, and I don't have much control over my treatment. If I think about it too much, I feel like I'm being carried away by this whirlwind of events that are out of my control. So I control other stuff. I just used the word "control" 7 times. Sorry.

Speaking of my disease... Oh yeah, that's why you have all been checking in! I wanted to take a minute to sing the praises of the Avera Prairie Center. I have been keeping an eye on this place since it was built. As a matter of fact, Matt & I snagged tickets to the grand opening in October of 2010, because Lance Armstrong was the keynote speaker. This was, of course before his fall from grace.

(moment of silence)

I was very impressed by the overall peacefulness of the place, and the beauty and artistry incorporated into the space. Aside from being a world-class cancer treatment center, it incorporates several integrative therapies for patients to take advantage of, including exercise classes, acupuncture, massage, a wig salon, art and music therapists, a dietician, a cafe that features the Mediterranean diet, and a live music area, with a grand piano and frequent performances from local artists. There is beautiful art hanging all over the building, and a lovely prayer chapel nook on one end of the atrium.

A couple of things I want to specifically talk about is the Look Good, Feel Better program, which is not limited to the Prairie Center. It is provided by the American Cancer Society, and is available to any woman with any kind of cancer. It is a skin care/ makeup class for cancer patients where they can get together and learn about the specific challenges that come with chemo and radiation treatments. They provide a kit including makeup and skincare products from several different companies- it's not about any specific brand, and a chance for these women to get together with others who are all in the same boat.

I showed up a half hour late because I'm a duh, but there were 4 other survivors there. Well, 5, including our presenter, Del. She's also the wig lady, and totally awesome. Anyway, she said that this session was rare in that we were all breast cancer patients (except for her). Three of the ladies were older than me, and one was about the same age. We all shared our stories, and we talked a little about our treatments. It once again became clear that there is no cookie-cutter treatment out there. We all have our own battles to face, and I was struck again by how very, very fortunate I was to find my lump when I did.

We watched a video, in which the participants actually bared their bald heads with each other (gasp!) while doing makeovers with the goodies in our bags. When it came time for us to wash our faces and do our own facials, I said, "OK ladies. Are we doing this?" and I took my hair off. One of the older women looked at me aghast, then very self-consiously took off her own wig. We all talked about how vulnerable it made us feel to go "au naturale" in front of anyone besides our immediate families.

I didn't necessarily learn anything new at this class, but it was the closest thing to a support group I've attended, and it was nice to be able to talk to others in sort of the same situation. I highly recommend the class to any woman going through chemo treatments. It's true. When you look good, you DO feel better.

Another program that I've taken advantage of is the acupuncture in the integrative therapy studio on site. My oncologist recommended that I give it a try for some of the side effects of chemotherapy. I was too busy to get a treatment right around my first round of chemo, but that first round gave me an idea what kind of side effects would plague me the most. For me, it was diarrhea, extreme heartburn, fatigue, some nausea (but not too bad), and a little later, neuropathy. Dr. Flickema, the medical acupuncturist who performs the acupuncture, knows right where to put the needles, and by golly, it works! I was skeptical, I'll admit, but I've had 6 treatments, and it has helped immensely! I haven't had to take any meds for nausea, heartburn or even diarrhea since starting acupuncture.

I grabbed some pictures. It feels weird when she inserts the needles. I have to force myself to relax. And the ones in my wrists give me a good zing every time, but it doesn't really hurt. It's just weird.

She does my legs and feet,


elbows and wrists.

It is unfortunate that most insurances won't cover acupuncture. I had a generous benefactor (OK, my mom) cover the cost of these treatments, but not everyone has those advantages. I would highly recommend it if there is any way you can swing it (on top of all those other mounting medical bills. YIKES!)

I have to say, in the department of God's great provision, He has proven faithful time and time again.
Every time I start to worry about money, I have decided to pray about it instead, and God's people have been so generous to meet our needs. We have received sizable cash donations, gift cards, meals, car repairs, garden produce, and numerous other gifts from not only our dear friends, but others who just know of us and our situation. I am so humbled and overwhelmed by these gifts, and it is so cool to be able to show our kids God's tangible provision in our time of need. It has built our faith tremendously.

It hasn't always been this way. Usually, I pray for God's provision, and he sends me another student ("Ugh! You mean I have to WORK for it?") and I have to somehow add more work into my already busy schedule. It seems like every time we get a little financial cushion built up, a major car repair or unexpected expense rears its ugly head. In nearly 21 years of marriage, we've never gotten ahead, but God has always provided. He has proven Himself faithful time and time again.

Thought I would close this post with some pictures of my many wigs.

As you remember, this is the first wig I got:
I almost always wear it with a scarf tied around it. 
It just kind of sits funny. It's OK, but I'm not wild about it.

So I got another one. I wear this one almost every day now. 
I like it a lot. It's light, easy, and gives me a completely different look!
It may be the only time in my life I'll have blonde hair, so I'm rolling with it.

The rest of these are my silly wigs. Mostly they just sit in a box in my closet, but I have them just in case...

Let's call this one "Natasha"

And I don't know... "Blonde Natasha"

This one is "Adelaide"

I will wear this one when I play Pinocchio later this month

Try as I might, I can't make this one look right. 

And everyone needs a blonde beehive.