pleased

Mark and I met with Dr Campbell today. He is “pleased” with the effect the Halaven has had. My tumor marker numbers have gone down and my pleural fluid has decreased. He suspects that because I’ve had the drain in so long (he wondered if I was going for a record with my 60 days and counting) I won’t need a pleuradesis–rather, the lung and the lining will be irritated enough by the drain to adhere to one another without the procedure. That would be nice!

So, we’ll stay the course with my current meds. I will have two more rounds of Halaven (4 treatments total). They will be at a reduced dosage since my white counts are so low. After that, we’ll check tumor markers again and if they are low enough I would possibly get a break from the chemo. That would be nice, too.

I have been slowly getting stronger as time has gone on with this treatment. The last two days have been as close to normal as I have been in months. I’m hoping it continues.

Thank you for your prayers and care. We have been so well taken care of.

Be Like Birdie

As this drain issue has dragged on, I have taken on a new mantra. “Be like Birdie.” Birdie the puppy lives in the moment swinging wildly between crazed action and sound sleep. So, I am trying to be more like her. Living in the moment. Doing what I can do when I can do it. This has meant short days at work if I’m able to go at all. And resting in the wonderful care of God’s people.

Yesterday, I had chemo again and my hemoglobin was very low so I had a blood transfusion today. My drain also stopped working yesterday, so after a CAT scan following chemo I had a new drain put in and then removed to have a different drain placement this morning. It has been two long days at the cancer center for me and my favorite mom.

Last weekend, during my lovely sister’s visit, my hair made a mass exodus from my scalp. This means I actually let Becki near my head with a scissors and I am now wearing hats and waiting for my scalp to be less tender so that I can try the wig Mom got me last fall.

Through all of this I feel rather calm. My new drain is comfortable and drains from the front rather than from my back so that I think I will sleep better at night. I’m not terrifically upset about my hair coming out. When I do get to work, I love it just as much as usual and my wonderful colleagues pick up my slack with grace and kindness.

I’m hoping that I can continue to “be like Birdie” until the drains are out and my hair is in.

However, I do know that there is one Birdie thing that I will not do. I will not climb up onto the grill to survey my fiefdom and get a good look over the privacy fence (as pictured below–Dad took the photo through our garage window–she’s hard to catch up there once you open the door). I’ll let that be Birdie’s special thing.

grill

Jesus Calling

jesus-calling-for-kids.jpgZoe wanted to start the new year with new devotional books, so we picked up two. One of these we are reading after dinner. It is Jesus Calling: 365 Devotions for Kids. Mark and I would like to rename it: Jesus Calling: 365 Devotions for Kids to Read Aloud while Their Parents Cry. We are obviously not far into the book, but each devotional has hit home. Yesterday it was about being patient with God’s timing.

I tried to keep reminding myself of that today as I received my new chemotherapy, Halaven. Halaven will likely give me more fatigue and nausea and maybe some more hair loss. However, Halaven also gives me hope that the fluid production in my lungs will slow and that I’ll be able to be done with it once and for all with a pleuradesis (sp?) procedure. I am still producing over a liter a day of nutrient-leeching fluid and blood. My mornings are the worst as I try to make up for the fluid lost in the night. I must force myself to eat and drink. Usually by late afternoon and evening I am up and about, if a bit drained. My parents stay with me throughout the day doing all that needs doing and more. They are shouldering our burden exceptionally. There aren’t words of gratitude that suffice.

And if my earthly parents are doing this for us, what must my heavenly parent be doing? I imagine God is telling me to be patient and that things will happen in God’s time, not mine.

As I was settling into my chair for chemo today, I got a text from a former student. It said, “Praying for you today, Mrs. Turner. Remember God is in control.” I wonder if this was Jesus Calling again.

The Battle of the Pleural Fluid

Mark and I met with Dr. Campbell this evening. We hoped for some clarity on why I have been feeling so awful. We had the results of a CAT scan from Tuesday and tumor marker numbers from a blood test on Tuesday as well.

We didn’t get the clarity we were hoping for, but we did get this… We are still winning the War (though I usually shy away from these “war on cancer” analogies, it works in this case). My tumor marker numbers were drastically lower–great news. And the CAT scan showed mostly reduced tumor activity with only a few nodules increased slightly in size. So, on paper, I’m doing fine. But. I feel awful most of the day. So it’s the Battle of the Pleural Fluid that we are trying to resolve to get to the bottom of why I’m so nauseated, etc.

This will take us back to the Interventional Radiologist to get the pleural fluid resolved faster. We will be making calls in the morning to try to get seen by him. Dr. Campbell is deferring to his expertise on the mechanics of draining the lung–there may be other options than the bulky lung drain I have in now. In addition to the physical draining, Dr. Campbell will be putting me on a new chemo to try to dry it up as well.

So, grateful for our position in the “war”, Mark and I are embarking on the Battle of the Pleural Fluid. With the unflagging support we have around us, we must be able to turn this one around. Thank you for your prayers. Dearly.

Advent hymn

It was the first Sunday of Advent when we sang this hymn in church. It was vaguely familiar. “Awake! Awake and Greet the New Morn.” The lyrics go like this…

Awake! awake, and greet the new morn, for angels herald its dawning. Sing out your joy, for soon he is born, behold! the Child of our longing. Come as a baby weak and poor, to bring all hearts together, he opens wide the heav’nly door and lives now inside us for ever.
To us, to all in sorrow and fear, Emmanuel comes asinging, his humble song is quiet and near, yet fills the earth with its ringing; music to heal the broken soul and hymns of loving kindness, the thunder of his anthems roll to shatter all hatred and blindness.
In darkest night his coming shall be, when all the world is despairing, as morning light so quiet and free, so warm and gentle and caring. Then shall the mute break forth in song, the lame shall leap in wonder, the weak be raised above the strong, and weapons be broken asunder.
Rejoice, rejoice, take heart in the night, though dark the winter and cheerless, the rising sun shall crown you with light, be strong and loving and fearless. Love be our song and love our prayer and love our endless story, may God fill ev’ry day we share and bring us at last into glory.

We couldn’t have been far into the second first when the tears started leaking from my eyes. Later in the service came a sermon that got me scrambling for tissues a second time. By the end of the service, I was well out of tissues and Zoe was giving me sidelong glances. I was comforted that the woman in the pew ahead of us was wiping her eyes too.

Though I have a genetic predisposition to cry in church, it is hard for me to explain crying in church to Zoe (Mark has gotten used to it by now). To let her know that they are not sad tears or necessarily even happy tears. They are tears of recognition. They are, somehow, worshipful tears. Tears of welcome to a God who has shown up and held my heart yet again.

We have sung it each Sunday since, so the lyrics have cemented themselves more firmly in my brain. I find them coming to me when I drift to sleep or when I wake up. “Though dark be the winter and cheerless”–could the author possibly have lived in West Michigan? I remind myself to be “strong and loving and fearless.”

I am looking forward to singing this song on Christmas. I expect I may even cry. Welled up gratitude spilling over for tidings of comfort and joy coming to us even today.

here is our hot mess

As Mark and I ate dinner tonight while Zoe rested on the couch, we remembered that we had been invited to two Christmas parties tonight. It made us giggle thinking that we could show up, me with my lung drain, Birdie iffy on the house-training, and now Zoe diagnosed with pneumonia this afternoon. Mark thought we could walk in the door and say, “here is our hot mess!”

So this is how we are finishing up 2011, just as we began it. Zoe with pneumonia. My family is all in town and they are taking very good care of us. We are so grateful.

What also makes me thankful, however, is how many doors we really could walk in and say “Here is our hot mess!” and how many of you would welcome us in. Even if you were hosting a party. (And we hope the two we are missing are a blast tonight!) That’s just how wonderful all of you are.

another day

I woke up Sunday morning with the same cough I had on Friday. Thinking that I certainly couldn’t have filled up with fluid again that quickly, I took a Benedryl to try to stop post-nasal drip. The rest of the day was OK, though I get a little loopy on Benedryl. This morning, though, I woke again with the awful cough. It’s the kind of please-put-that-person-out-of-their-misery cough that is awful to listen to and leads to terribly sore core muscles.

First, Mark told me that I probably attributed too much to post-nasal drip. OK, point taken. I was ready to just call for another drain of my lung, but then Mark reminded me that I am not a health care professional and I probably should get some medical advice first. OK, another good point. So, I called my nurse and the wheels of the cancer center were set in motion. I started with an x-ray and ended with a temporary drain installed in my back.

Basically, today’s lung x-ray showed that fluid had built up again. Dr. Campbell thought that rather than having it drained, I should have a drain put in so that it doesn’t keep building up. After it has stopped producing fluid, I may have a pleuradesis (sp?) in which the lining and the lung are stuck together. When I heard I would have a lung drain, I asked if they could do it today. Not only did it get done today, but my favorite interventional radiologist did the procedure. (Who doesn’t have a favorite interventional radiologist?) This was an answer to a few silent prayers offered up while waiting for x-ray results, scheduling, etc.

The procedure went well. My amazing parents tag-teamed time at the cancer center and hospital. And now I sit here at home with a drain coming from my back tonight, but with not one cough. The drain feels bulky and odd, but it’s a huge improvement over the coughing. I’m hoping and praying that the drain does what it needs to do and that I can feel good over the holidays with my family.

Pleural fluid, though annoying, doesn’t necessarily mean that the cancer is growing. I am reminding myself of that tonight and taking things one step at a time. My first step will be seeing my sister and her family in the morning–yahoo!!

overdue

I haven’t posted in a good long time. To those of you who still check this cyber-space, thank you. And sorry.

Things have been up and down the last few months. We’ve been figuring out the side effects of different drug combinations, doing a bit of guessing, a bit of research, and finally getting bailed out by my fabulous doctor Uncle George. On the up-side, we learned in November that my tumor marker numbers were down. Lovely!

This month has finally seen the plateau of side effects. Yesterday, I had my lung drained of 1.4 liters of fluid and by the afternoon I was literally and figuratively breathing easy. We’ll get another tumor marker count in early January.

In November we also added a puppy to our family. She is a black goldendooodle named Birdie and when she isn’t trying to chew our hands and socks, she is capturing our hearts. Here she is the night she came home. Since then she has doubled in size. She is a wonderful distraction from health issues and Zoe already loves her dearly. It’s good to have a dog in the house again.

zandb.jpg

Thank you for reading this blog. For praying for us. For continuing to ask after my health after all these years.

huh?

Mark and I met with Dr. Campbell today expecting two things–finding out where the cancer was growing since my blood counts were up and learning what medicine I would be switching to. I was waiting to learn just how fast the rest of my hair would fall out and just how awful the side effects of whatever aggressive new medicine would be.

But neither happened. Instead we learned that the imaging I underwent last week showed no evidence that the cancer is on the move. My bones are “grossly stable” (sounds funny to me), my liver is stable, and the nodules in my lungs have had very minor growth over the last year. I feel as though my mouth dropped open more and more as our meeting went on. I felt like saying “Huh?”

So, what is causing the tumor markers to sound the alarm? Basically, we don’t know. Dr. Campbell suspects it may be the pleural fluid I’ve been dealing with since spring. Each time my markers were taken, it was before getting drained. We’ll take tumor markers again tomorrow just to see if they were effected by the drain I had last week.

As for medicine, he is taking me off the Epirubicen, not because he didn’t think it worked, but because there is a lifetime dose maximum before the medicine threatens the heart. I had the same med 8 years ago, so I’ve had close to my lifetime max. He’s also switching my orals meds, taking out the one I’m on that gives me night sweats and a voracious appetite and putting in one he believes will be even more effective controlling the fluid. I’m extremely willing to let that one go.

Essentially, the meeting today could not have been better. The med switch could not leave me more optimistic that my hair will start filling in, my energy will return, and a few pounds will go back where they came from. I will admit that I had absolutely no hope that this would be the outcome of our meeting today. People would say that they were hoping and praying for a good outcome from the tests and meeting today and I’m afraid I was rather dismissive as if a good outcome were not possible.

Perhaps this is why my former pastor’s words ring so true to me so often. Years ago she had said to me, “Remember, if you can’t keep the faith, let the faith keep you.” Recently I heard another sermon with essentially the same message.

It has been getting very hard to keep the faith. Thanks for keeping me. I am, as always, so grateful.

Health update

I am writing this from the cancer center where I am unexpectedly spending my day. Mark and my appointment with Dr. Campbell this morning started a snowball of tests. My tumor markers were up again and yet I have no other real symptoms of disease progression. So, time for tests–namely a CAT scan, a lung drain, and a bone scan. Since I am a chemotherapy patient, my nurse schedules these appointments. The doctor wants to see me again on Monday so they needed to happen yet this week. I begged my nurse to try to schedule them today since I work on Thursday and Becki is in town on Friday. She worked her magic. I just finished my CAT scan, my lung will be drained in about 15 minutes and the two stages of the bone scan are at 4:30 and 8:30 tonight. Perhaps I’ll even make it home for a few minutes between the drain and the bone scan, we’ll see.

I’m not feeling terribly worried right now, but today’s scheduling does make me feel a bit at the mercy of fighting this disease. My controlling nature rankles against that. I may need to buy this shirt to inspire myself