A quickly answered fervent prayer

Yesterday it took three adults (Mark, Dad, Mom), one dog (unhelpful), a wheeled office chair (helpful), and lots of pauses to get me out of the house and into Mom’s waiting car. During one pause we held hands in the kitchen and Dad prayed…strength for today and hope for tomorrow.

By the time my overburdened Sherpa (Mom) and I had made it to my regular treatment chair I had risen from my wheelchair twice…once to get weighed and once to transfer from my wheelchair to regular chair. I was getting my blood pressure checked so I asked for my pulse ox. It was at 79. I was immediately given more oxygen and my nurse came down for a consult.

Mark and I had a pretty scary time this weekend not knowing what to do when I couldn’t catch my breath, my heart was racing, and I was throwing up. We were rather at a loss. Getting me to the ER seemed like quite an endeavor and we weren’t even sure what they would do there. Eventually the panic passed and I was able to breathe in bed.

We told my nurse about all this and told her that my Doctor Uncle George suggested we look into palliative care. So shortly after our debriefing with my nurse, she got us a referral for a palliative consult.

This is where our prayers were answered. At the end of treatment I met Dr. Mulder who happened to be in the building and happened to have a cancellation. Dad was able to be there along with Mom and me. Dr. Mulder’s expertise is palliative care and he immediately switched my pain meds to help my breathing and my appetite. His manner was perfect. He was doctor and pastor in one. He also prescribed a steroid to help my breathing. I’m also on a bit more oxygen.

He thought I would see a difference within a week, perhaps days. This morning I came downstairs unassisted and took up residence in my favorite chair. Mom was a little floored. I have had very little gasping for breath and can walk where I need to, if slowly.

This gives me great hope that I will feel comfortable during the holidays while my new chemo gets going on those cancer cells. Thank you dearly for all of your prayers.

I am the she

She has been in bed all morning

She just had a shake, so that’s good.

That was Becki, just checking to see how she’s doing today.

Chris called wondering if she needed dinner tonight.

She said she’s feeling nauseated now too.

Emily just kicked off her shoes and got right into bed with her…I’ve always said she has such nice friends.

Does she know that Sara left a message?

Heather was here dropping off foods she thought Tash would want to eat.

How did she seem when she got up?

She ate pretty well just now.

She still looks pale, but I think her energy was better today than yesterday.

Did she take her meds?

……………………………………………………………
I am on temporary hiatus from being the narrator of my own life. Right now, I am the she.

December health update

Mark and I had a much-awaited meeting with Dr. Campbell this morning. My breathing has gotten worse over the last weeks and I’ve gotten increasingly wiped out and worried. I was certain that my breathing issues were either due to the many pain meds I’m on or to increased fluid in my right lung after the removal of one drain. We also hypothesized that I could be anemic (low hemoglobin) as I often am.

Dr. Campbell saw us shortly after 8 a.m. He was prepared to change my chemotherapy because of my slightly higher tumor markers, but was a bit surprised at how I looked–especially that I had used a wheelchair to get there so that I wouldn’t have to stop to catch my breath so often. My hemoglobin was fine. He immediately ordered a CAT scan with a wet read (immediate reading by a radiologist). He was checking for 4 things.

1. fluid around the heart
2. fluid in the pleural space around the lungs
3. a blood clot in the lung
4. pneumonia

When we saw him a few hours later, he let us know that none of these were evident. I have only a slight increase in pleural fluid on my left lung and a slight increase in tumor size. He said that if he had to pin it on something, he would choose the slight tumor growth. So, essentially, it is good that I don’t have any of the four candidates listed above, but it is still frustrating to find myself so short of breath. I am fine when I am sitting, but if I walk from one room to another or up a flight of stairs I need a fair bit of time to recover.

I will start a new chemotherapy that we hope brings the tumors and fluid back under control. Abraxane. My first dose will be on my regular chemo day next week. It should have similar side effects to other chemo I have had–possible hair loss, maybe neuropathy.

I will try to be patient in the meantime. Getting so wiped out and being so dependent on others is hard for me. Mark has been beyond perfect. My parents ever-helpful. My colleagues understanding. Friends and family so quick with meals and other wonderful help. And yet I struggle against the limitations.

The waiting of the advent church season and my own waiting match up once again this year. And yet, I don’t find I’m much better at it. It’s abundantly clear that I’m still desperately in need of all that grace lying in a manger.

hopeful. happy.

I believe that things are on the upswing in our neck of the woods.

On Thursday I made it in to school for the first time in a week. After an hour of being there, teaching, and walking the halls a bit, I realized that my oxygen tank had been off since I left the house. I was rather giddy. To think that I was able to do all that with only minimal shortness of breath was unbelievable.

For the rest of the day I went rather cavalierly on and off my oxygen. I even went out to watch Calvin volleyball on Thursday night.

However, by Friday morning, I was wiped out and needed a good long sleep. And a good consistent day on oxygen. But the returning energy, the returning breath, the returning normalcy just brim me over with hope that this medicine will do the trick.

Also, from Wednesday night to Saturday, my sister was here. She was visiting to attend the funeral of our aunt, Mom’s dear sister. It was so good for all of us to have Becki here at such a significant time.

I was already feeling hopeful, but having Becki here is always a happiness infusion for me, too. Hopeful and happy. Can’t get a better beginning to Thanksgiving week than that.

Unlike most other visits, I actually remembered to take a picture of the two of us. Not our best, but it makes me grin.

The pack is back..and it brought a friend

On Tuesday I wound up in the ER with more shortness of breath. By 10 pm I was back home, but with second drain in my lung. This one is the fanny pack style. Oh, returning 80′s fashion, why do you eschew the fanny pack? So practical, so stylish…ok, just practical. I am currently sporting my purple one.

On Wednesday I was to have chemo, but it was impossible to schedule me. I had to wait until today. In the meantime, while the 2nd drain was helping, I still had times of gasping for breath.

So today I was put on oxygen. I have a robot-like compressor by my chair in the living room which Mark will bring upstairs for me to use through the night. It has exceptionally long tubing, so I can go wherever I want on the main floor with my tubing leash on. I have only stepped on it once so far causing my own head to jerk down. Very fancy moves, I have.

I have two different canisters for leaving the house. A 3 hour canister that goes on a cart and a 1 hour canister that I can strap on like a purse. When I had treatment today, Mom cand I got good practice at getting around with these things. Should get easier as time goes on.

I don’t love having all of this cumbersome gear, but I do love being able to breathe. The panic that comes with shortness of breath is unparalleled.

I am a bit of a piece of work with all of these tubes around, but I am a breathing piece of work and that’s awfully nice.

a wild week

It was a wild week over here.

On Monday, I was extremely short of breath even after the efforts of last week to manage it.

I called in to my doctor’s office and was called back with the news that I needed to be admitted to the hospital. For some reason, this made me cry. I think I look at going to the hospital as some type of defeat rather than as going to a place where they can actually observe me and care for me.

After 18 hours in the hospital, only 2 real things had happened: I had a CAT scan and my dear friends Emily and Sarah got me into a private room when at 9 p.m. I was wheeled into a double room with a roommate who’s family reeked of smoke. There would have been no sleeping on my part that night.

By Tuesday afternoon, we finally learned that it was fluid causing my distress after all and that I would need a drain. Fortunately, the amazing interventional radiology PA we saw soon after we received this news agreed that it might be best for me to go home and to get the drain placed in the morning over at the cancer center rather than another night in the hospital.

The drain was placed Wednesday morning. It is a different kind than I had before. It is not as bulky and I have control over when it drains. With my new head of hair and my lack of fanny pack drain, I feel like I am not always advertising my health status. I was breathing well enough to make it happily from the couch to the door every time we had trick-or-treaters. I wouldn’t have made it halfway there even once on Monday.

Here is photo evidence of me with hair as I write this:

Thursday morning we saw Dr. Campbell. We will keep the drain in as long as we needed to for comfort and we needed a few more rounds of chemo to see if we can dry out the lung with medicine. I don’t feel impatient about this at all because the drain is so manageable. It seems the likelihood of a blood clot in the lung had motivated his caution with me and hence my hospitalization.

Dr. Campbell has also been very good about managing the pain that comes with the fluid, the drain, and the chemo. I feel optimistic and functional.

After the doctor, I went straight to school. My ever-praying and understanding colleagues were so welcoming and wonderful. It was great to be there. I even cooked dinner that night.

Today I’ve been a bit groggier trying to work out the right dose of pain meds, but did get a few good things done–again with Emily and Sara’s help.

After my drain placement, my parents went to be with my sister’s family in Atlanta. Auntie Roze and Uncle George have stepped up to be “team B” in their stead. I’m afraid they are spoiling us rotten just as my parents do.

After a wild week, I’m ready for a peaceful deep-breathing kind of weekend.

Palliative smugness

I was so eager to go to school this morning and feeling so up-and-about-y that I really wanted to ignore my shortness of breath that was getting a little worse as the morning went on. Finally, realizing that I really didn’t want to be dealing with this over the weekend and remembering how low my oxygenation had been yesterday, I called my nurse.

She wasn’t in, but another nurse I really like called me back. I was wondering if I needed another thoro, a pleural drain, or oxygen for home. She checked with Dr. Campbell and got back to me in minutes with the instruction to get to the cancer center for a chest X-ray with a wet read and then to come up to their office to check my blood oxygenation.

A few phone calls to Mom, Dad, and Mark later and Dad is dropping me off at the cancer center. Mom has beaten me there.

We go through the tests and learn that my blood oxygenation isn’t low enough to require oxygen at home and that my chest X-ray shows a minimal increase in fluid from the one taken after the thoro yesterday. So, Campbell would like an echocardiogram to check my heart stat.

While The nurse is scheduling this, I overhear someone say “anemia” in the same sentence as “shortness of breath” and realize that no one has drawn my blood today. I ask the nurse if we should check for this (especially since I thought I was anemic on Tuesday) and she sends the lab back for a finger poke. I ask the lab for an arm stick instead so that we have enough blood for a type and cross if I need a transfusion.

While we wait for the lab work (the day has involved a LOT of waiting), I get an appointment for an echo tomorrow afternoon. Then, the lab comes back. My hemoglobin is at 8.5….definitely anemic and transfusion worthy. Also explains the nausea and weakness I’ve had. Transfusion scheduled for tomorrow…good thing we did enough blood for a type and cross.

We are headed home and I’m on the phone to Mark with the tedious blow by blow.

“How are you feeling now?” he asks.

“Better,” I say, “I’m not thinking about my breathing because I’m so smug.”

“Ah,” he says, “palliative smugness.”

Indeed.

The business

This new med,Ixempra, has been giving me the business. And pleural fluid has been on its heels to add insult to injury.
Last week Tuesday I started the new med. Mom had a bad cold so I asked her not to come with me. I thought I would be fine alone.

When I got to the cancer center I learned that my regular nurse was gone and the one I had was incredibly busy. Probably not the best day to have gone it alone.

My brother emailed saying that his morning meetings we cancelled and wondered if he should come down. No, I insisted. Then I got a call from a nurse scheduling me for my thorocentecis the next day. I started coughing and couldn’t stop. It got ugly. I got wise. Emailed Chris to take him up on his offer of coming by. When I heard his shoes on the tile floor I started to cry with relief.

Chris bolstered me and fed me. The nurse told me I could expect some fatigue from the chemo and I was on my way.

On Wednesday I got my right lung drained and was breathing well. But on Wednesday night pain kicked in. I managed on Thursday and through the weekend with ibuprofen. By Sunday I was getting puny and wondering when the pain was going to abate.

By Monday morning the pain was excruciating. But, blessedly, Mom was over her cold! So, Monday she arrived to me writhing in pain. Of course, she came with great prescription pain killers (it’s good to have an uncle who’s a doctor!). Tuesday, we ventured to Target after my long morning nap and I was overcome with nausea. So mom drives me down to see the nurse and I get some hydration. We had thought that my hemoglobin would be low enough for a transfusion…close, but no. And today I call Mom unable to breathe. This time we go in for a thorocentecis and my blood oxygen level is 82. Under 90 and you go on oxygen. Mom even has to drive me up to the 2nd floor in a wheelchair because I’m so short of breath. After the thoro, I’m doing much better.

So, Monday pain. Tuesday, nausea. Wednesday, can’t breath. Wondering what tomorrow will bring.

Whatever it may bring, I know it will also bring my mom. With Dad right behind, vacuum, drill, or dog leash in hand.

Ixempra may be giving me the business, but it’s messin with the wrong family!

October update

It has been a while since I posted here. Since my last post I’ve been feeling pretty good. With the exception of about 4 days every 3 weeks, I have been able to clip along rather happily. School has gotten off to a good start for both Zoe and me. And we celebrated Mark’s 40th birthday in September. We had great fun heaping love on the gentle keeper of my heart. (Thank you, Wallis family, for making it perfect!!)

Even Birdie celebrated a birthday. No trip to Chicago for her, but she did get a squeaky toy which was destroyed within hours. She continues to charm and aggravate us in almost equal measure. OK, more charm than aggravation. She’s awfully cute.

I won’t get into all of the machinations that precipitated this, but today Mark and I met with Dr. Campbell because my tumor markers were slightly up and a chest xray showed increased nodule size and increased pleural fluid. I had noticed the increased fluid. It is nothing like it was last winter, but I do have some discomfort (like a side stitch). I’m still able to do normal things like walk the dog, etc.

However, because of the blood work and xray, Campbell thought we should move on to a new drug. So, in two weeks I’ll be starting Ixempro. It’s from a new family of cancer fighting drugs and he thinks I’ll do well on it. I did my quick internet search and the possible side effects are all things I’ve dealt with before.

Only bummer is that the drug could take my hard-won hair from me. This has been possible on other drugs and hasn’t happened, so I’m staying optimistic and keeping my hats out of sight.

Thank you for all you do to support us. We are looking forward to a good fall and winter. Hope you are too.

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!