normal: the final frontier

Today I am embarking on our last little journey in the return to normal. After our rather awful winter, it has been small steps in the return to life as we used to know it. Our own definition of “normal.” We’ve done most things. For instance, I do my own grocery shopping (mostly–thank you Meijer Grocery Express), I do our laundry (again, mostly–thank you, Mom), I clean (mostly–thank you, Dad!), and I, in general, am the mom of the house again. It feels good.

But there was one thing remaining. The final frontier. Sides of the bed.

When Mark and I got married, we prided ourselves in switching sides of the bed. No predictable roles for us. We were going to do things differently. Our switching sides of the bed periodically was our claim to an egalitarian marriage somehow. And we were a little smug.

That lasted about a year.

For the 13 of the last 14 1/2 years of marriage, we had firmly encamped on our respective sides of the bed. Until Birdie and my pleural drain entered the family at about the same time.

My pleural drain bag had to hang on the side of the bed and its placement in my back necessitated which side I could best sleep on. Add to this a nipping puppy who also slept by the side of the bed and certain arrangements had to be made. We had to switch sides of the bed or something really ugly could have happened.

For those of you who have slept on a specific side of the bed for years, you know how disconcerting it can be to switch. Sure, you can sleep, but something just doesn’t feel right. Are the sheets scratchier on this side? Why can’t I throw my leg out over the covers the right way? Why is that light right in my eyes? This is how it has been for us for the last eight months.

Today, however, confident that my drain-free days will continue, Mark and I are going back to our sides of the bed. I will have my lamp and my alarm clock (nevermind that they are identical). Mark will have his power cord for his phone. We will both feel a little more normal pulling the covers up and rolling over.

Oh, little normal things of life, how I love you!

I met with Dr. Campbell this afternoon. My tumor markers are up slightly, but this means almost nothing as they were drawn after only one treatment on the new med. I feel so doggone good, though, and that means quite a lot! Dr. Campbell had gone through CAT scan records for me dating back to February of 2010 and leading up to the CAT I had last month. As we looked at these results it was apparent that very little had changed in that amount of time. This is further confirmation that the distress of the winter was brought on by the pleural fluid, not by growing tumors threatening organs.

So now I am…
1. still drain free–yippee!!
2. able to walk 2 miles again–neuropathy clearing up!
3. able to walk up the stairs without going hand over hand up the handrail
4. growing a bit of hair so that I more closely resemble Sinead O’Connor than Humpty Dumpty
5. thoroughly enjoying every minute of this delicious life.

I should tell you that when I saw my nurse last week she was surprised by how good I was seeming. Still no drain? No shortness of breath? Nope. Neither one. Wow, she said, who do you have praying for you?

You.

Thank you!

beloved

Yesterday marked my 41st year on the planet. I adore birthdays and yesterday was just perfect–with its perfection bleeding into the day before and after as well. I am still riding on a wave of birthday goodness.

Thinking on the wonder of birthdays today, this quote came to mind. It is from Raymond Carver’s Late Fragment. I ran across it on an artist’s blog that my sister had recommended to me years ago. The artist, Lisa Congdon, is doing a year of hand lettering and this snippet is one that really drew me in–both Carver’s words and Congdon’s visual interpretation of them.

It is exactly why I love birthdays. On birthdays, the beloved-ness I experience day in and day out of this lovely life of mine is crafted into sentiments expressed in words, cards, gifts, and experiences. A quilt of beloved-ness that I wrap myself in at the end of the day and sigh contentedly.

I got exactly what I wanted for my birthday this year. And a whole lot of it. Thank you.

summer blessings

Last week was my first week on the Carboplatin and Neulasta. If the time that followed was any indication, this is the pattern I expect to emerge:

Day 1: carboplatin treatment–hang out with Mom ;)
Day 2: neulasta shot–feel good due to steroids given the day before
Day 3: start feeling a little puny–take a nap or two
Day 4: Oh my word, everything hurts and I think I’m going to be sick. Spend the day in bed on Vicodin and Zofran while my parents and Mark do everything else.
Day 5: Who was that in bed yesterday? Why that funny look on your face, Mark, was I not like this yesterday? I think I’ll run a few errands. OK, a nap sounds good.
Day 6: Feel fine. Maybe a little puny and blue.
Day 7: Let’s decorate. Your house or mine?
Day 8-20 (I’m hoping, I haven’t gone to day 20 yet) more of the same.

If this is the pattern that emerges, I’m more than happy. One awful day out of 21 is not bad at all. And, of course, with so much help, life is really manageable.

This morning my parents came over and cleaned with Zoe and me. Then Zoe and I went to babysit our sweet niece Vivian after which we really loaded up on groceries. Just now Zoe and I were in the backyard reading magazines and eating chips while Birdie trotted around. It all felt so fortunate and lovely.

Life in general feels really rich and abundant right now. No pleural drain. All this great time with Zoe. My sister and her family headed this way. Evenings out on Dad’s boat with my brother and his family. Hanging out with dear friends in long, leisurely days and evenings. Looking forward to time with Mark’s family this weekend while his grandma is in town. Watching the Tigers with Mark. My parents–always my parents.

I can only hope that this wonderful blessed feeling continues all summer long. With buddies like the two pictured below, it will be hard to complain…

med switch, sister weekend, performance art

Image

On Thursday of last week, Mark and I met with Doctor Campbell. My tumor markers were again slightly up, which is now enough of an upward trend to warrant switching meds. So, I am leaving behind Herceptin, Halaven, and Fareston to begin Carboplatin today. I feel fine about this change (was expecting it) and look forward to the neuropathy in my hands and feet clearing up.

Thursday night I headed off to the Veal Retreat (my sister’s house) and was rewarded not only by seeing my sister and her wonderful husband Jim, but also by the fabulous people who are my nephew and nieces.

Becki and I quickly settled into doing what we do best: thrifting and being silly. Fortunately, the thrifting gene is highly dominant and Ramona, Josie, and even Ike joined us for most of our adventures. Here is the traditional “sisters with thrifting haul” photo that Becki and I take on sister weekends.

And then, one day, we stumbled across my new performance art. It started innocently enough while we waited for a store to open in the mall so that Ramona and Josie could buy a gift for a party that evening. “Hey, Becki, take my picture in front of these mannequins.”

By the time the store opened (a matter of minutes, I must admit), Ramona had scouted the perfect store window display…

And once you have climbed into a store window display, there is really nothing stopping you from climbing onto tables, joining floor displays, and holding up mannequin heads near your own all in the name of performance art (and in the name of embarrassing some teen nieces who never expected it to go this far).

I am considering taking my art to the next level: actually trying on department store clothes that coordinate with the mannequins. The only rule for the mannequins is that they must have facial features and they must be bald. Other than that, they are all fair game. What, exactly, is the fun of being bald if you can’t climb into store displays, anyway?

It was the perfect weekend–with some kids who are as close to perfect as they come. Thank you, Veals!!

a break from the fanny pack


Over the weekend, my pleural drain stopped working. It wouldn’t flush or drain, so we went in to see the doctor yesterday. I was dearly hoping that this meant the lung was dry and I could get a pleuradesis in time for lots of summer swimming (can’t swim with a pleural drain).

This hope was not realized. The top reservoir in the lung has dried up, but there remains a lower reservoir. The interventional radiologist suggested placing a new pleural drain there. However, the lower reservoir does not seem to be growing and I’m not short of breath. And I am good and sick of having a drain.

So, we agreed that I would have a break from the drain and we’d check in three weeks to see what’s happening in the lower lung. If I need another drain, I’ll get one at that time. If the reservoir doesn’t seem to be growing, I may just forgo the drain for now and not pursue a pleuradesis. The lung must be completely dry for the pleuradesis to have a chance to work–and the procedure can only be done once.

My young friend, Naomi, when her family was getting ready to pray that I could be done with the drain, told her mom that she thought I wore the fanny pack for fashion. Bless her heart. I do feel like I’m without an appendage or something since I’ve had a drain since December 18, but fashion? No. The eighties aren’t back quite that strongly yet.

To celebrate my fanny-pack-less-ness, I will be flying to see my sister in Atlanta in a week. Hooray!! And wearing all of the dresses I own without looking like I’m pregnant :)

Come on, Verlander!!

When Mark bought our gigantic TV, we both suddenly became sports fans. Who knew how fun sports are to watch in high def?! So, as a newly minted baseball viewer, I understood quite well the sports analogy Dr. Campbell used with us yesterday.

When we met with Dr. Campbell a week ago, my blood tests had shown that my tumor marker numbers were creeping up. Not sure what to make of this, Dr. Campbell ordered a CAT scan. We had the results yesterday. According to the CAT scan, the cancer is either stable or shrinking. This is great news.

However, my neuropathy from the chemo drug Halaven is becoming bothersome. My fingertips are numb which leads to more kitchen accidents and difficulty typing, but not much else. My feet and legs up to my knees are also affected. I often feel as though I have to consciously lift my left leg in order to walk. I’m slower on stairs and feel clumsy in my gait. Dr. Campbell’s concern with my neuropathy is not so much that I have it now (it’s not wrecking my life) but that if we do the Halaven too long, the neuropathy might not reverse when I go off of it (not a fun lifetime issue).

So here comes the sports analogy…is it time to pull the pitcher? For those of you who are about as big a baseball fan as I was at this time last year, pulling the pitcher means taking the pitcher off the mound for the rest of the game. The manager can do this any time and replace the pitcher with a relief pitcher from the bullpen. Once a pitcher is replaced, he can’t pitch the rest of the game. And, due to the toll pitching takes on the body, likely won’t pitch for another 4 games. Pitching a full 9 innings is actually rather rare. It takes a savvy manager to know when to pull the pitcher or when to leave the pitcher in–trusting that even though he let a few walks go by he still has some 90 mile an hour fastballs left in his arm. Taking him out too soon can mean the waste of a good pitcher for the rest of the game.

Dr. Campbell, our savvy manager (I’m picturing him as Tiger manager Jim Leyland now), is not ready to pull the pitcher. He thinks that Halaven (now known as Tiger pitcher Justin Verlander) still has a few fastballs up its sleeve. Until Halaven/Verlander hits a batter (my neuropathy gets worse) it’s staying on the mound.

OK, sports analogy over.

For the most part, I am happy with this. I struggle with the limitations I have because of the neuropathy and the pleural-drain-that-won’t-give-up, but I’m happy that life has gone back to what we know as normal and that the CAT scan showed good things. I’m glad we’re not picking up the phone to the bullpen just yet.

Cheer on Verlander with me, won’t you? This 7th inning is really dragging on, but we know he’s not American League MVP for nothing!

they also serve who only stand and wait

My favorite English teacher of all time made us do lots of memorization. Dad taught English Lit, a course for 12th graders, and I was the only kid at home when I was his student. So, he and I would often recite to one another. He was helping me with my assignment, but also the two of us rather loved the sounds of poetry. We would talk to the dog, “little lamb, who made thee? Dost thou know who made thee?…” while Pepper looked at us quizzically.

One poem that Dad had us memorize that year was John Milton’s “On His Blindness.” In it, Milton explores what it is to serve God, envisions the power at God’s behest and concludes, “who best bear his mild yoke, they serve him best” and then, “they also serve who also stand and wait.”

I can remember quite clearly Dad’s passionate explication of this poem. Relating it not only to Milton’s own blindness, his dependence on his daughters to read and write for him, but also to us. We were hale and healthy high school seniors, but Dad assured us that this would not always be the case. There were times we would only be able to “stand and wait” and this was service to God as well.

There may be a bit of irony that the man who fervently taught this lesson is also the man who is half of the pair who gave me my very dominant ABD gene. Always Be Doing. If I am not actively doing something, I get a little nuts. I walked in on Dad vacuuming the underside of my living room rug this winter. It’s a darn strong gene, that ABD.

But this winter has been a lot of waiting for me. Lying and waiting. Sitting and waiting. Sometimes standing and waiting. Even now that I’m more active and back to a more normal schedule there is waiting. I’m more tentative in my actions and certainly not as productive. This is hard for me and I end up feeling guilty that I’m not doing more.

It’s in this guilt that Milton’s line comes to me. And while I usually attribute this only to the recall of Scripture when I least expect it and most need it, I think this is the work of the Holy Spirit. That, too, felt strange. Does the Holy Spirit speak to me in poetry? Isn’t that the work only of Scripture?

My question was answered on Easter morning. A gorgeous service at church and the sermon based on Mark’s account of the resurrection. Mark’s account is spare and differs from other accounts in that it describes a man dressed in white. The man is not identified as an angel or Jesus, but bids the women to tell the good news of the resurrection. The sermon focused on his clothing which the pastor called “resurrection clothing.” She had much to say about it, but what struck me most was her conclusion, her challenge to us. What, she wondered, did our resurrection clothing look like? Could it be an apron, a 3-piece suit, a lab coat, a hospital gown? “Hospital gown,” I thought, “she just said hospital gown. When I am wearing a hospital gown, I too am serving God. I, too, am wearing the clothing of the resurrection. They also serve who only stand and wait!”

This makes the waiting and the standing easier. It calms me for my two significant doctor appointments this week. It allows me to curl up in the chair reading Percy Jackson book one while Zoe sits on me and reads Percy Jackson book four. It gives me wonderful time with my mom even if it is at the cancer center. It gives me the patience to empty my drain one. more. time.

I’m waiting. I’m serving. I’m thankful.

giddy gratitude and grim determination

Yesterday was Zoe’s 10th birthday. Despite all of the wrangling I had tried, I ended up with an oncologist appointment in the morning. We had discovered I had cancer the first time on Mark’s birthday and learned about the metastatic disease on Zoe’s 4th birthday. We tend to avoid linking oncology with birthdays.

However, yesterday it was good that they were together. We served Zoe breakfast in bed and then hustled off to see the doctor. We knew that my tumor marker counts were slightly up. My fluid production is also up. So we were a bit on edge over what the next course of action would be.

And after a good visit with Dr. Campbell, we are staying the course. We both feel good about this decision. The side effects of the Halaven (neuropathy, fatigue) are manageable. I’m doing OK.

It was after we had gone through all of this medical stuff, that I got personal and told Dr. Campbell that it was the anniversary of my diagnosis six years ago and also our daughter’s birthday. I thanked him for all he had done to keep me around.

To my surprise, he said, “It’s not me, it’s you. It’s your determination. If I could bottle that and give it to other patients, I would.” He went on to talk about making a normal life for our family and how important that was. It turned into a really wonderful and meaningful conversation. A huge shot in the arm. I was giddy from the appointment and overwhelmed with gratitude for Zoe’s 10th birthday.

In the Meyer family we have a phrase that I think came from my Grandma: “grim determination.” It has become a bit of a joke: i.e “you think you’re going to fix that with just grim determination?” Mark has noted my grim determination in less than flattering times.

What I wish I had said to Dr. Campbell is that it’s not my determination. Sure, I’m the one who has to swing her legs over the side of the bed and get up every morning, but it’s Mark who already has a hot breakfast cooked, the dog fed, the dishwasher emptied, and the music playing. It’s my parents who are maintaing the “normal” of the house–doing laundry, cleaning, running errands, etc. It’s my brother who calls every day to check in and drops off meals on a moment’s notice. My sister who visits me in this bleak winter bringing me stories and laughter. When I’m running low on optimism, it’s my mother who spoon feeds it to me like soup, sharing from her genetically generous store.

It’s my administrators who tell me to come in only when I feel well enough. My colleagues who fill in every crack I’ve left behind. The friends who visit and notice something to be done and just do it. (Who paid the parking ticket that I noticed on the van this winter, by the way?!). It is Mark’s family who offer help time and again.

So I guess if it’s not Dr. Campbell and it’s not me, then it’s you. It is you who have given out the grim determination. You who have urged me on to the amazing gift that is Zoe’s tenth birthday.

Emily reminded me a few months back that when I was first diagnosed with metastatic disease I said I just wanted to live until Zoe was in double digits. My reasoning was that she’d have natural memories of me. Well, as usual, I’ll be asking God for even more. We got Zoe’s ears pierced yesterday and I thought about how I want to see it all–the proms, the graduations. I don’t just want 10 anymore. I want 10 times 10.

Fortunately, the host of people who are praying for me, bolstering me, and caring for me seem to want it too. I wouldn’t have an ounce of grim determination without you. I am giddy with gratitude.

wisdom in the faculty lounge

Considering how seldom I was at school this winter and how infrequently any time I had there included a visit to the teacher’s lounge, it is amazing that I came away in the last four months with not one but two life-altering comments from the same colleague.

It was in November when my med switching was driving me crazy and Birdie was making me even crazier. I had been praying for “the right dog at the right time” since Daisy died and had been convinced when we got Birdie that the prayer had been answered. However, a week into her tasmanian devil puppyhood, I was convinced we had made a big mistake. I was saying something like this around the lunch table when Roberta said, off-handed and laughing, “good thing you’re not doing it for you, huh?”

Oh. Right. Zoe. Every night Zoe was praying gratitude for Birdie. Even with the pin-sharp puppy teeth, Zoe would play with Birdie every chance she had. Birdie was exactly the right dog at the right time. Maybe not for me, but without a doubt for Zoe. In time, she has become exactly the right dog for all three of us.

The second time Roberta set me back on my heels was more recently. I had been feeling rather sorry for myself. Still with the drain (today is day 88, but who’s counting?), still with the bald head. Roberta came up to me a few weeks back, put her hand on my arm and said, “I have been praying for you…how is your breathing?!”

Oh. Right. Breathing. That’s what this was all about. I couldn’t climb stairs without a rest at the top. Couldn’t read aloud without a break. Would bring in groceries and need a rest after each bag. My breathing. It took me a minute. “My breathing is fine,” I say. “Wow, what an answer to prayer,” says Roberta. I walk the dog at a good clip. I go from the basement up to Zoe’s room and sit down ready to read aloud. I bring in bag after bag of groceries (and I even shopped for them myself–unlike this winter when Mom and Dad fetched every little thing). I can breathe.

I love my job for many reasons. Working with people like Roberta is certainly one of them.