Back to the Blood Bank

Today found me back in the infusion chair for another blood transfusion.

Not my best selfie, but you can see the big filter for the blood (which looks like tomato soup) and my long hair. The bandage secures the needle that accesses my port - SO much easier than a regular IV!

While I'm excited about and very thankful for my "Lynne-parza," I'm also feeling betrayed by my namesake medication because it's been unkind to my blood counts. I find the trajectory interesting: the first month at the full dose, my counts dropped a little. The second month, they took a nosedive. Pretty much the same thing happened after I resumed the medication at 3/4 of the dose.

Last weekend, my fatigue really increased, so I figured my blood counts were low and I asked to have my blood checked a week earlier than planned. That validated my suspicion: I was low enough to need a transfusion again. Our plan was one unit of blood, but they ordered two. Hm. But two will help me recover faster, and this is December, not a month to function at less than full capacity! So I took both units with a thankful heart. 

Quick science lesson, if you're interested:

Our blood is sort of like vegetable soup: several "big" cells floating around, a myriad of tiny proteins, nutrients, minerals, and other molecules, and the plasma which, like broth, keeps everything suspended and moving through our blood vessels. The big chunks include white blood cells (to fight infection), platelets (the body's bandaids, key to stopping blood from flowing out of any break in the blood vessel wall), and red blood cells (to bring oxygen to all our cells). 

In my case, we're most interested in the RBCs (red blood cells). They are measured by hemoglobin and hematocrit. Hemoglobin is measured in grams (per deciliter), so it's technically more specific than hematocrit, which is the percentage of red blood cells in the total blood volume. 

When RBCs are low, the body's demand for oxygen is greater than the reduced RBCs can supply. So it's harder to do basic things. Have you ever had a tough workout, and you have to push yourself to do that last distance or those last repetitions? When my counts are low before my transfusions, that's how I feel just walking across the hospital campus. It's ridiculous, but true: I get halfway and think, "Wow, I could rest right now, but I'm going to push myself because I know I can make it with a little extra effort." Frustrating. Lame. But I haven't collapsed yet!

OK, back to my story:

I have access to the pharmacists at the company that makes Lynparza, so I had a chat with one of them earlier this week. However, he didn't really have answers to my questions. I did learn that big drops in blood counts are a common side effect. And that usually they drop the dose by 1/2 after that (not 3/4 like we did). So perhaps when I start again, my counts will remain stable. But he was surprised I'd had the same drop after reducing the dose.

I also asked about efficacy of the lower doses vs the full dose. It's a fairly new drug (approved only a couple years ago), so they don't have a lot of information yet. Interestingly - and disappointingly - they haven't separated out the survival data for full doses vs lower doses. I had a quick conversation with a different pharmacist there who said they saw good results either way, but that could just be positive reassurance - she didn't specify what "good" meant. And I know I often use terms like "good" at work to give a patient hope even if their situation isn't as good as it could possibly be. Not lying, just not specifying, like, "98% for most people, but 80% for you" - because 80% is still pretty great.

Anyway...

I had asked for prayer for wisdom on what to do about my medical oncologist. Thank you for praying! As often happens, God had a solution that hadn't occurred to me. Before I abandon ship, I'm going to talk to my doctor about what I'd like her to bring to the table, and see what she has to say. I'll do that next Tuesday (12/6). 

In the meantime, I had a chance to ask advice from another doc on the team who I really respect and who knows the med oncs really well. In addition to a good recommendation, he had two nuggets for me: 1) my current med onc... well, that's her style, so I may not see a change, 2) an endorsement to have another med onc in the practice on my team, even if I stay with my current doc. His thought: two heads are better than one. So I'll see the other doc on 12/16, and I'm feeling good about the plan.

If you're still with me, here's the non-medical (more interesting) part:

This has been a tough fall for me. While the Lynparza is working (per the CT scan - hooray!), it has also let me down (per the blood counts). I'm thankful I can live a normal life in spite of all my cancer recurrences, but the ups and downs of remission and recurrence and treatment and recovery take an emotional toll. 

It's really not that bad, but it's an ever-present shadow. I stay turned toward the light (in my case, that's God and my faith in Him), and that helps tremendously. 

But the angst of the election hit me hard, especially after a year of increasing awareness of the brokenness and violence in our world. This has been a hard month at work, too, with more women than usual with cancer, all with more anxiety than most or more difficult cancers than we normally see. And now Christmas, while lovely and beloved for all the right reasons, brings pressure and extra work, too. 

 Doing my part to spread Christmas cheer with outdoor lights.

So I'm still "good," but more like 80% than 98%.

While I was receiving someone else's blood today, I did my Advent reading. Today was the first part of Psalm 72 (but I read ahead a couple days so I could take in the whole passage - I didn't want to stop part way through!). Advent is about expectation, looking forward to Christ's coming, both as part of this season and part of His future return and reign. One of the amazing things about the Bible is how this ancient document can be relevant today. 

As I lean into the post-election discussions and try to understand other perspectives, and as I live in this world with my problems and others' problems, I feel the weight of it all. And today, my Advent reading reminded me of the hope we have for the future, when Jesus comes again. Here are some of the promises from Psalm 72:

"Let the mountains bring peace to the people... May God vindicate the afflicted of the people and save the needy and crush the oppressor... In His days may the righteous flourish... For He will deliver the needy when he cries for help, the afflicted also, and he who has no helper. He will have compassion on the poor and needy... He will rescue their life from oppression and violence, and their blood will be precious in His sight."

RIGHT NOW the church - Christians - need to be living this out and representing God's promise to end, or at least alleviate, inequity and violence. But someday there will be a definite end - and a just judgment - for all oppressors, and there will be peace. I bolded my favorite words above - I love that the Bible teaches that God will crush the oppressor and that He will rescue the needy with compassion, and that they are precious to Him and their suffering does not go unnoticed. It's easy to have a short-term view and wonder if that's really true, but we have a good, good Father who will set things right in the long run.

Whether or not that's encouraging to you, I'm going to end on a note that I hope makes you chuckle:

This takes me to 98%. Punny and just a little irreverant. I hope these will be on the banquet tables in heaven. Not that the food will need extra seasoning. Product by Lorrie Veasey, Our Name is Mud, Enesco.com

PollyAnna Weighs In on the Election

A long overdue cancer update:

Last month I had a CT scan that showed the Lynparza is working! Of the three areas seen on the last scan, one was "no longer detectable" and the other two were "significantly decreased." Hurrah!!! That was a huge answer to prayer, especially after stopping the Lynparza for a couple weeks and then starting again at a lower dose.

The lower dose has been good to me - most of my side effects are gone. Mostly just nausea here and there, and wildly unpredictable fatigue. Like Sunday I was exhausted before I got in the shower, but today I endured an excruciatingly long commute (wasn't everyone supposed to be heading NORTH???), worked overtime, and then walked the dogs, with energy to spare. My blood counts stabilized, too. So thank you for your prayers for me!

I received a call from the pharmacist at the drug company (they touch base with everyone taking this med). She reassured me that they've seen great results even when people reduce their dose. Love that kind of news!

Meanwhile, I'm weighing my options for my medical oncologist. She's supposed to be the quarterback of my treatment team. I chose her after my beloved doctor moved because she has a lot of experience and she's a lovely person. But at our last appointment, she asked me when I wanted to come back for blood draws and to see her. And when I asked about the next scan, she said, "Let's wait and see how things go." Ummm... I am not the quarterback, here, nor do I want to be. Ugh. You are more than welcome to join me in praying for wisdom and direction on that topic!

OK: Now a word about the election.

(Are you rolling your eyes? If you are, that's OK. I'm rolling mine, too. Because there have been So Many words already today. Everything has probably been said a million different ways, so me throwing in my two cents feels a little obnoxious. But I'm doing it anyway: free speech and all of that. And we also have the right to listen or not, so I promise not to be offended if you skip right over this.)

First, a disclaimer. I'm pretty "apolitical" in the sense that politics are usually as far on my periphery as possible. I think politics are mostly a big tangled mess with a little truth buried in there somewhere, and it's not a mess I want to invest any energy into untangling. Is that irresponsible of me? Probably, but I'm over 40 and a cancer survivor, so I've entered that sweet phase in life where I own who I am, flaws and all, even if it's a little embarrassing to admit sometimes.

Alright. 

I HATE election season. (Can you call something a season when it lasts a hundred years??) This election has been especially long. It's been like watching a train wreck in slow motion. Are these candidates REALLY the best we can do?? 

There are some things of value in both platforms. And things of great concern. Many issues are important, but some are deal breakers for me, so that usually makes my decision easy. But this year! Does either candidate have integrity? Are they honest and trustworthy? Do they treat everyone with love and respect, regardless of whether or not they agree? If someone is worthy of leading our country, they should have a strong, consistent, moral character in addition to a good platform.

I know, I know, it's politics, so those are pretty unrealistic expectations. And when Bill Clinton was in office, our country made a pretty strong statement about not caring about our leaders' morality. But still, is it really so hard to find an upstanding citizen??

Because I was so dismayed by our two main choices, I chose to vote for a third party. Some may say I threw away my vote. Maybe. But one candidate doesn't line up with my deal-breaker issues, and the other... there are just so many concerns, I just couldn't do it. So I voted against both main candidates, hoping my third party vote would speak to the need for change and someone different next time.

Being somewhat neutral, knowing "my" candidate was a loooong shot, and believing no result would be a win for America, the election was fascinating. If you take the emotion out of it, it was amazing to watch the votes roll in and see so many states be pretty evenly split. My husband and I watched, on the edge of our seats, with our eyes wide and our mouths hanging open as the numbers turned in Trump's favor. Totally unexpected. (We tuned into BBC's coverage, which was a refreshingly neutral presentation. No drama, no partisan comments, just the data.)

So now what?

I'm not triumphant like some. I'm not in mourning like others. I'm at peace. 

Why???

I have a friend who loves history and politics. Someday I hope he pursues his dream to become a teacher, because he'll make those classes really interesting. He watches war movies all day on holidays like Memorial Day and Veteran's Day. (Sounds like torture to me, but I really respect his way of honoring and remembering our history. Actually, HE would be a great candidate...) He says the political pendulum swings one way and then the other, self-correcting in a sense.

Trump is one guy, in a system with a lot of checks and balances, for four years. Which sounds long now, but in the grand scheme of time, even just in the life of our country, that's not too long. I'm irrationally optimistic that Trump might rise to the occasion. Did he ever expect to get here?? I doubt it. I wonder if he was trying to throw the election by being such a jerk. Maybe now he'll apply some filters and stop offending pretty much everyone. (I said irrationally optimistic.) I am very curious about what a businessman will do as president. I've thought for a long time that our country could benefit from a business mindset, rather than a political one. We shall see...

But WAY more than that, I'm at peace because my hope is not in who our president is for the next four years. My hope is in God, who is sovereign over all leaders, over all time. I trust in a long-range plan that spans millennia and has at the heart of it love, justice, and a desire to redeem everyone and everything.

So what am I going to do now?

I'm going to respect Trump as POTUS. (Wow, doesn't that whole sentence sound weird and difficult!)

I'm going to pray more consistently for our leaders and our nation.

I'm going to continue to act justly, love mercy, and walk humbly with my God.

I'm going to continue to love and respect people and seek to listen and understand them, regardless of whether or not I agree with them.

And I'm going to end with something adorable, because aren't we in need of some fluff???

 My dogs, taking a rare break at doggy daycare a couple years ago. PC Scampers DayCamp

My nephew, when he was new. This tops the adorable chart, doesn't it?? PC - not sure, but not me

A Prayer for Your Struggle

Right now, I'm sitting in my warm, cozy family room. All the lights are on and my printer is churning out a document for my cancer support group in the morning. This is all significant because WE HAVE POWER. "Stormageddon" (or whatever catchy, exaggerated title the media have assigned to this incoming Storm of the Century) has not materialized yet. We shall see what tomorrow holds, but I'm a storm skeptic. Too much crying wolf in this neck of the woods.

Stormy walk today. Windy, but rain free.

Cancer Update:

It's been a good couple weeks on the cancer front! 

My blood counts continued to climb while I was off Lynparza. My oncologist talked to the ovarian cancer specialist downtown, who was unconcerned about the dramatic drop in my counts and recommended starting again at six pills (instead of the four my oncologist was thinking). I was going to lobby for starting at six and seeing how it went, but the expert saved me the effort. Yay!

(Why am I not seeing the expert downtown? Because she's a phone call away and because it's a lot easier to walk across my hospital on my lunch hour for a blood draw or an appointment. To see the expert, I'd have to take half a day to schlepp downtown in unpredictable traffic. And pay more, too.)

AND THEN - after a week of starting back on the Lynparza, my counts went UP! Another pleasant surprise, which I'm sure is due to all of your prayers. Especially the kids' prayers - I'm constantly humbled by the amount of people praying for me, but when I hear that the kids, many of whom are now young teens, are reminding their parents to pray for me DAILY - well, wow. I'm speechless. Words fail me in expressing what that means to me.

In Other News:

This week, I've been cultivating a prayer session for our cancer support group. We tried this last year and it went really well, so we're doing it again. But we wanted original material and I had no ideas, so I started by reviewing what we did last year.

Do you ever revisit something you did awhile ago, and not recognize it? When I dug this out, I didn't remember any of it, but I was pleasantly surprised! 

And then I was intimidated about doing anything else! So I did what we all do when we're lacking ideas in this culture:

Search Pinterest and Google!

Uff da. There are a LOT of super cheesy and supremely lame results when you google things like "cancer prayers."

But I did find this gem, which I absolutely LOVE:

PC: https://upliftingquotesandscriptures.files.wordpress.com/2015/09/steady-my-heart.jpg

"Even when it hurts, even when it's hard, even when it all just falls apart, I will run to You cause I know You are lover of my soul and healer of my scars. You steady my heart."

Tonight I'll share with you what we did last year. It's written specifically for cancer, but it applies to all types of suffering, so I hope it will soothe the hurting parts in your soul, whatever you're going through right now.

(And, since this is my blog, please excuse me while I climb up on my soapbox for a minute: for some reason, our culture puts cancer up on a suffering pedestal. Now, some cancers are really, really awful. But in many cases there are way worse medical diagnoses. And in life, there are lots of non-medical heartbreaks and trials. So let's not put our energy into comparisons, but instead love and encourage each other through our respective challenges.)

All right - here you go. 

The idea is to read each section, then personally reflect and pray on that topic. Modify it for your situation. 

If you think it requires more trust and faith than you have, that's OK - one of my favorite things about Christianity is that God wants you now, right where you're at: broken, messy, imperfect, even mad or confused. He's strong enough to take it and wise enough to guide you from broken to mended. Doubt is OK. We just have to be real and genuinely seek answers.

Prayer Exercise:

Jesus taught us: “Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks, receives; and he who seeks, finds; and to him who knocks, it will be opened.” Luke 11:9-10

Today, we open our hearts. We bring our hopes, our fears, our burdens. We entrust them to You and to each other. We accept Your invitation and your promise in Matthew 11:28 to “Come to Me, all who are weary and heavy laden, and I will give you rest.” 

“Bear one another’s burdens, and thus fulfill the law of Christ.” Galatians 6:2

Topic #1: Father, we don’t want to waste our cancer. Please help us use this experience to boldly tell others about You, to live more intentionally, to love our people better. We want to leverage this trial to cultivate harmony and healing in our relationships. Teach us to focus on You rather than our struggles, and deepen our spiritual roots.

“Answer me, O Lord, answer me; 

that this people may know that you, O Lord, are God.” 

I Kings 18:37 (Elijah on Mt Carmel)

Topic #2: God, we know You will heal us, either here on earth, or in heaven. We ask you to heal us in a way that clearly glorifies You. And if we have to wait for healing, we ask You to bless us while we wait with Your peace that passes understanding. Help us gain an eternal perspective and anticipate heaven. We want to invest in things of lasting value and leave a meaningful legacy for the people we love.

“Beloved, I pray that in all respects you may prosper 

and be in good health, just as your soul prospers.” 

3 John 1:2

“I know that You can do all things, 

and no purpose of Yours can be thwarted.” Job 42:2

Topic #3: Lord, we trust You, but cancer raises scary questions and difficult feelings. Please remind us of Your love and Your promises. Please comfort us when we are frightened. Please give us safe places and safe people with whom we can process these hard feelings. Please help us as we grieve for the things cancer takes from us. Grant us rest and relief from the physical challenges. Thank You for walking every step of these difficult times with us.

“The Lord is good, a stronghold in the day of trouble, 

and He knows those who take refuge in Him.” Nahum 1:7

“You have taken account of my wanderings; put my tears in 

Your bottle. Are they not in Your book?” Psalm 56:8

Topic #4: Father, as we live with cancer, we often find ourselves at the end of our rope. But You promise to supply all our needs. Please show us Your unfailing love and encourage us by providing what we need at exactly the right time. Give us strength, energy, and patience when we are weak. Fill our dark places with peace and joy. Give us what we need to fulfill our financial obligations. Provide wisdom and clarity to us, our doctors, and our people when we have important decisions to make.

“But as for me, I will watch expectantly for the Lord, I will wait

for the God of my salvation. My God will hear me.” Micah 7:7

Topic #5: God, we acknowledge that You are sovereign over everything, including our cancer. We declare our decision to trust You, regardless of our fears, disappointments, and other feelings. Please help us see Your purpose for our cancer and help us live in a way that glorifies You.

“The Lord will fight for you, you need only be still.” Exodus 14:14

Benediction:

“We thank our God always, making mention of you in our prayers, because we hear of your love and of the faith you have toward the Lord Jesus.” Philemon 1:4-5

“The Lord bless you and keep you. The Lord make His face shine upon you and be gracious to you. The Lord lift up His countenance upon you and give you peace.” Numbers 6:24-26

Not Where I Was Planning to Sit

Last week, I had a routine blood draw.

Except it wasn't routine.

My oncologist's team called me pretty quickly afterward and asked me to come back for another sample because my red blood cell (RBC) counts were really low. [There are a few ways we measure RBCs, one is hematocrit, which is the percentage of RBCs in the total blood volume. For an adult woman, normal is approximately 35-45%.]

Mine was 19.8% last Wednesday. The plan: blood transfusion ASAP. 
Which sparked a kaleidoscope of thoughts in my head:

WHAT?!
This is not good.
Lynparza can cause anemia, but it shouldn't be this dramatic.
No wonder I've felt so weak and easily tired lately.
The other option: bleeding. But there's no sign of that.
Other options (like iron and B12) tested normal.
I think Lynparza is working because none of my symptoms are what I'd expect if the cancer was growing.
This will mean stopping Lynparza, at least temporarily. That could be bad or inconsequential, because at this point only God knows whether the drug is effective.
Getting blood is inconvenient.
But it will make me feel a lot better. Which would be pretty awesome.
Stopping Lynparza for awhile is risky, but necessary, and I won't miss the side effects.
Risky. Risky. Risky. But these are the best choices.
And, ultimately, God is sovereign over this - He knew it would happen, He knows why it's happening and what the future holds. And I choose to trust that.

Ugh.

So last Thursday afternoon, instead of working at my desk, I was on the other side of the hospital, sitting in a recliner in the infusion room getting two units of blood. (Thanks in large part to my wonderful co-workers, who made it clear that they would cover for me.)

And that evening, I felt SO MUCH better! Actually, I went to the bathroom part way through the second pint of blood and I wanted to walk around instead of sitting back down.

Then I met with my oncologist to make a plan. I'm stopping the Lynparza until my counts recover, then I'll restart at a lower dose. Until then, blood draws. In the meantime, my doc will talk to the area's ovarian cancer specialist downtown.

Monday, my hematocrit was up to 27.4%. Yay! Today, it's at 26%. Hm. The nurse scheduled me for another blood draw next Friday, but told me to come in sooner if I become symptomatic. Honestly, I'm a little freaked out. I think counts can temporarily dip after a transfusion, but I had the sense that the nurse wasn't expecting that drop. 

So we'll see what happens. I might need another transfusion. I hope to discuss this with my doctor early next week.

Random thought: In the medical field, we're trained to separate ourselves from someone else's blood at all costs. So it's pretty strange to be consenting to have a stranger's blood dripped in my veins. I know it's cleaned and safe, but still weird. And it looks like tomato sauce.

In the midst of all of this, I still managed to stir up some trouble. When I went to see the doctor after the transfusion, her assistant wanted to take my blood pressure. Well, for each unit of blood, they take your vital signs at the beginning, then at 15 minutes, and at the end. It had been 15 min max since the infusion nurse had taken my blood pressure for the 6th time that afternoon. So I asked if the assistant really needed to take it again. "Well, you can REFUSE it if you want to." Oh dear. I explained my situation again and she said, "I'm just doing what I'm told. I'll mark it down that you refused vital signs." I bet she put a "Difficult Patient" stamp on my chart. Seriously.

In other news, my sister and niece are coming tomorrow for most of the week. We are SO excited and I'm looking forward to a fun week!

I would love it if you would pray for my blood counts to recover, and for the RBCs I have to bring sufficient oxygen to my body for me to keep up with my niece! Thank you!

Have a great weekend, my friends.

Finishing My Story

Just to be clear, my title is NOT my cancer update for the week!

I saw my oncologist last week and my tumor markers are down slightly (a good thing). Hooray! She prescribed a medication to help prevent my nausea and commiserated with me on how oral chemo would make the gag reflex hypersensitive. It was nice to be validated in that! My red cell count is low, too, which explains why I've been so tired.

I gave her a gift, too. I had some extra time last week, so I made a flow chart of my treatment history. There have been so many scans, surgeries, chemos, etc, and it's impossible to keep everything straight. My chart is color coded (orange for surgery, teal for chemo, etc) and each recurrence is marked with a little explosion icon. I think my information design colleagues at Hornall Anderson would give my elementary efforts a thumbs up.

Next: blood work in a month, CT scan in two months.

Thank you for your prayers - please keep them coming!


My title IS about a story that got interrupted the other day. 

It's actually two stories, one new and one old, now woven together. It's one of my favorite cancer stories. I was telling it to two friends, and halfway through a couple other people arrived and we didn't get back to my story, so I thought I'd share it with all of you.

Last year I didn't tell my new student lifegroup that I'm a cancer survivor, because it wasn't a current problem and I was relishing not having cancer as an active issue. Since my recurrence happened weeks before we'd all be at camp together, I debated whether or not to discuss it with them at camp. Several people encouraged me to tell them (after all, it's a powerful testimony), so I made my news available to their parents in case they wanted to tell them ahead of time. 

Now, I just needed to find the right moment.

Tuesday afternoon, one of the girls pulled me aside and said, "When are you going to tell us?"

uhhhhh... "Tell you what?" (She could mean anything!)

"YOU know!" 

"You mean about my cancer?" (What if that's NOT what she means?? But it was, so I knew I should bite the bullet sooner than later.)

That night, the message was about following God wholeheartedly. And one of our songs was an update of the old classic "I have decided to follow Jesus." What a perfect set up!

So I told them about how I sang that song when I was their age. Back then, we had motions that went with most of the songs. I was the kid in the front row, enthusiastically doing all the motions, as big as possible. Yes, officially, I was a dork. For Jesus, but still, a big dork!

And I told them about how, on camp staff one summer, I sometimes didn't sing the songs because I knew I didn't mean them at the time. (This was probably more about arrogance and mild rebellion than integrity.)

Not long after that, I decided to follow Jesus sincerely. Which has made all the difference as I navigate this life-threatening cancer.

Telling them I have ovarian cancer led to some funny questions. This is one big reason why I love middle-schoolers. They are still willing to ask the peripheral questions some people are afraid to ask.

Like "What's an ovary?"
In a split second, I thought all these things: "Don't they know?! Shouldn't they?! What does their mom want them to know?? But if they're asking, I'm giving them an age-appropriate answer." And - since I'm a nurse - "Yippee! A chance to talk about anatomy and physiology!"

And "So... you don't have your period any more?? LUCKY!"
Haha! This was great because I got to find out where they were at with that - valuable info.

Also: "Is it scary?" (Usually no, occasionally yes.) And a doubtful "Really?!" when I said so much good had come from having cancer. (Answer: YES. Without a doubt.)

I brought it back around with a story from three summers ago.

My first recurrence was in May 2013. I'd had surgery and radiation. The recurrence included the back of my vaginal wall, so that was the area they radiated. Radiation finished the Tuesday before camp, and I was feeling fine, so I went.

Early in the week, I started to feel the burn. Any movement or pressure hurt. It was awful.

At one point, during the worship (singing) portion of evening chapel, Pastor Koby read from Psalm 139, where it says God "knows when we sit down and when we rise up."

I pretty much immediately dissolved into a puddle of tears. And, even three years later, I was so moved by the power of that verse that I was crying again! I thought I'd get through my story without emotion, but there it was.

When I heard it the first time, it spoke to me directly: God knew exactly how I felt and how painful it was for me to sit down and to rise up. Very few other people knew because being in pain Down There wasn't something I wanted to discuss, as you can imagine! I cannot tell you how comforting it was to hear that while I was outwardly hiding my discomfort, God knew every single painful movement.

This year as I'm telling my story, when my tears started to fall, half of my cabin ran over and gave me a big group hug. The other half ran over to hug a girl who had been struggling with a headache all day and started crying when I did. Their loving actions were so sweet.

Here's what my story means for me. For them. For you.

When you're hurting:
God sees it. He knows. He CARES. Really.

Did you know the Bible says God collects every one of our tears in a bottle (Psalm 56:8)?

Photo: I imagine heaven with shelves upon shelves of colorful glass bottles, beautifully backlit, 

one for each of us, with every tear ever shed in them.

PC: ottawacollectors.com

And
When you're hurting:
God remembers it. Eventually, there will be justice.

It might seem to take forever, but your hurt will not be forgotten and there will be an accounting. Deuteronomy 32:35 and Romans 12:19 quote God as saying "Vengeance is mine, I will repay."

Photo: Ever seen an angry cat? I don't think it's too big a stretch 

to imagine God has a few on His divine vengeance team. 

(I can't explain why I love this photo so much, but I do. 

I know I used it just a few weeks ago, but it's totally worthy of re-use.)

You guys. Whatever your struggle is, you are never alone. Whether you feel connected to God or not, He knows all the painful bits and He cares about you. I know it hurts. I know it's horrible to go through. I know it can be lonely. But I also know there can be spots of beauty along the way and beauty and strength on the other side. And remember, Vengeance Cat is cleaning his gun and waiting for his order to shoot!

Recovery

First: cancer update

Not much news this week. I think I've finally got the upper hand with this cold. Thursday I will get the results of my blood draw, so we'll see if this drug is effecting my immune system. I am feeling the fatigue, the yucky chemo taste, and a little nausea - very annoying, but minor in the grand scheme of things.

Now: the interesting stuff

Yesterday, I had a FaceTime call with my brother and his family. If you've ever tried to do this with a five-, three-, and one year old, you know there's limited conversation and lots of craziness. Mostly good craziness.

During the call, my three year old niece was "massaging" my brother's back with her feet. We decided his back was going to look like the Olympic swimmers', but with foot marks instead of cup marks.

She declared she was stronger than her dad. So we asked her, "Who's the strongest person you know?" We thought she would say "Daddy!" Know what she said?!

"Auntie Lynne!" 

We were not expecting that answer! I am currently FAR from the strongest person she knows. But she's always been one of my biggest fans (for example, I was her number one nominee when they were looking for a new nanny). 

Photo: one of my biggest fans, and the world's most adorable three year old, 

showing her own strength by running barefoot on the rocks.

Later, I wondered if she heard someone comment on my strength in the context of all this cancer business. Regardless, her sweet vote of confidence was encouraging and inspiring as I seek hope and motivation to fight for recovery and increasing strength in the face of another round of treatment.

Recovery has been on my mind recently. In part because I felt so much progress, in part because it's a big topic among my cancer friends.

It's a little ironic to be writing about it now, when I'm back in treatment and feeling like I'm on a slippery, downhill slope.

One of the most surprising parts of cancer treatment and recovery happens after treatment is finished. It's kind of a sucker punch.

You're excited to be finished. All your people are excited you're finished.

But you're not.

The physical fight is done, but usually it's taken so much energy and focus that you haven't paid much attention to the emotional aspect of having cancer. You feel a little lost because you've had all this support during the physical battle, and you're supposed to be celebrating being finished, but you feel untethered without the frequent medical surveillance and action, and uncertain about what's next. Because you're different. It's a daunting task to figure out how cancer has changed you and how you feel about it and what all that means.

I got off easy because I was in school to be an oncology nurse when I was diagnosed, so my experience dovetailed neatly into my new career goals. But it's a catalyst for change for many people.

And because the physical fight was a FIGHT, your body needs time to get back to normal. Recovery is a little about where you were physically when you went into treatment and a little about what kind of treatment you had. But mostly it's about how your body responded to treatment, which is all over the board. Some people breeze through with no trouble and return to normal pretty quickly. Others get knocked down pretty hard and need a lot more time. Like months or even years.

Recovery is hard, but surprising.

Sometimes it's bad surprising, like when we went on vacation after my first year of treatment. We were just walking around San Diego on flat sidewalks, nothing strenuous, but after a couple hours I was suddenly overwhelmed by fatigue! Without even the courtesy of a warning. It felt like I was walking through molasses, and it limited what we could do during our vacation.

After more treatment, walking for just 15 minutes left me tired enough to feel like I needed to sit down and rest! Ridiculous. Frustrating. Even embarrassing. Thankfully, at the time, I was in a fitness program specifically for cancer survivors, and my coach explained why it was happening and that it was OK. And temporary. (Even though my fatigue increased during that program, I actually got stronger - pretty cool.)

Other times, recovery is surprising in a really delightful way.

Suddenly, after mastectomies, I could raise my arms all the way up above my head - stretch, even. Oh boy, no other stretch ever felt so fantastic!

Suddenly, I realized I was walking easily through the grocery store parking lot, when it used to take a lot of effort.

Suddenly, I noticed that I hadn't napped in months and seven or eight hours of sleep was sufficient.

Those are fun moments. And SO encouraging.

If you're recovering from treatment, be patient. It will come in time, probably with little surprises along the way.

If you're walking alongside someone recovering from treatment, be patient a little longer. I know it can be excruciating. We are all anxious to get back to normal and you've already been supportive for a long time, but please hang in there with us - it will be greatly appreciated.

Remember, it took months to get through treatment, so recovery won't happen overnight. May you recover well and wisely. <3

It's Just One Big Experiment

First, a cancer update:

Lynparza, my new cancer-killing drug, is treating me well. However, the Death Cold that found me two weeks ago is not. Quite the opposite, it kicked me to the curb and held me down, including keeping me in bed for the first day of our camping trip. And leading to an unprecedented and disproportionate meltdown a few days later. All I'll say is, that was UG-LY, but my friends were very gracious. Or possibly just stunned into fearful silence. But I'm almost over it (the Death Cold AND the embarrassment of the meltdown), and life is returning to normal. 

I see my oncologist in a couple weeks and I think she'll order a CT scan for mid-September to see if this drug is working. 

Please continue to pray that the LYNNEparza is effective!

Photo: Tonight's dose. My hope is that the cute bowl makes it more fun to take these pills. Not really working.

Second, and more importantly, my near-miss at fame:

Today in church they showed a video to inspire people to sign up to help with the middle and high school programs. I was supposed to be on the big screen, but the Death Cold's grip kept me home on the filming day.

The video was just fine without me and my eight years of leading a student "lifegroup" (a small group that meets weekly through the school year for Bible study, prayer, and building friendships).

BUT 

I love teens and I love working with them, and I want to tell you what I would have said. 
Because working with teens is exciting and YOU should think about it!

In preparation for the shoot, they gave us three questions:

1) What has brought you joy as you serve in student ministries?

I could do a feature-length film on this question! 
It's everything from the ridiculous silliness that happens in the cabin during free time at camp to watching these young people own their faith and make important, even wise decisions about how they're going to live their lives. 
It's watching my relationship with the girls change from child-adult into mentor into friend, and hearing the conversations change in content and depth. 
It's the uncensored and often insightful questions that they ask. 
It's getting into the messy problems with them, because there's growth and change as we walk through that together. 
It's being surprised by gaining friendships with their parents as well as with the girls. 
It's seeing younger co-leaders excel. 
It's enjoying the girls laughing at me when I am curiously ignorant about their culture or when I freak out because they put their recently pulled out teeth in my hand.

Photo: True story: My hand. Their teeth. Ew!!!

2) How did you feel inadequate or ill-prepared to serve with students? How has God answered those fears?

Fear #1: Am I cool enough?

Answer: Probably not. And the older I get, the more definitely not. But I think cool is over-rated. Teens - like most people - just want you to be real and reliable and they want to be treated with respect. That I can do. What I love: God knows them and loves them and can make all the difference as they travel the rocky road from childhood to adulthood. It's a privilege to walk that path with them.

Fear #2: Am I wise enough?

Answer: Definitely not. But it's not about me or my abilities. I need to be prepared with prayer and study. I need to be honest, vulnerable, and growing myself, because whatever wisdom I have, whatever benefit I can offer, is all because God has changed and is changing me.

Have there been questions I can't answer? Absolutely! Which is a good thing - if I don't know everything, then it's OK for them not to know everything. We can learn how to find the answers together. 

Have there been times when I've walked away thinking no one heard anything? More than I can count! Often guiding a discussion with teen girls is like herding squirrels. That's right - not cats, squirrels. It's a whole new level of chaos. But who knows? Those are the times I walk away saying, "God, my efforts seem completely fruitless tonight, so You're just going to have to work in spite of me." Because, seriously, I might say something wise now and then, but only God can open their hearts and minds and make the connections. 

Also, I'm learning that the girls are really good at answering each others' questions. Which is pretty amazing to watch. And WAY more effective than an adult's answer.

Photo: Just keeping it real: You will feel like this sometimes. 

Only by God's grace and strength can you keep it to yourself. Silence can be golden. Just like fire.

Fear #3: Am I prepared for everything?

Answer: No way.

The journey from childhood to adulthood is full of every kind of change. Plus we live in a world of infinite choices and opinions and rapid change. It's a messy and completely unpredictable combination. 

Nobody can be prepared for that.

But you can be there and pray with them and ask God to teach and guide both you and the teens. And you will watch beautiful things happen. And those goofy youth pastors? Behind closed doors, when the kids aren't watching, they have a lot of wisdom and experience to share.

Basically, leading teens is a giant experiment. You just keep trying new things. Some bomb, some work well for awhile, occasionally you have a stroke of genius. But it is NEVER boring!

3) Tell at story about a student who has impacted you.

I was discussing this with my husband, trying to choose the best one. There are SO MANY stories. 

One of my favorites happened the year I couldn't go to camp because I had a cancer-related surgery a couple weeks before camp. But I wanted to visit, so I took my thoroughly stapled belly on the ferry and went to camp for the afternoon. One of the girls came running up to me and she was SO excited to take me on a walk and tell me all about what she'd been learning that week, including giving her life to Christ and giving up a hurtful habit. My heart couldn't be more full - her love and joy were so beautiful.

But if I'd been at the filming, my chosen story wouldn't have been about one student, but about all of them AND their parents. (There I go, bending the rules again.)

When I was first diagnosed with cancer, my co-leaders and the moms and all the girls threw me a big encouragement party. While they were getting ready, two girls led me blindfolded through the church, up and down the elevator even, for (undoubtedly) HOURS.

Photo: This turned out to be a great trust exercise!

When everything was (finally) ready, I was guided to the room and found pink and teal treats galore and everyone in custom-designed shirts. So much thought had gone into the party and all the pieces of it. The best part was that each girl had chosen a charm to represent herself on a charm bracelet for me. We had to add some links and make a necklace to have room for all the charms! 

Photo: Can you see the love?!

When I signed up to volunteer with youth, I expected to give. But I never expected to get so much out of it! The girls, the co-leaders, the parents, the growth, the laughter, and even the struggles are rich blessings. Even on the squirrel-iest days, I leave feeling filled and happier than when I came.

So... Just do it!

Here we go again...

Unfortunately, I've got some bad news to share.

I had a routine CT scan recently, and there are three small new spots of ovarian cancer. One is near my spleen, one near my left kidney, and one... somewhere else in the lower left pelvic region. After awhile, it all blurs together! There's something questionable near my liver, too, but it's uncertain what that is.

Given the statistics for ovarian cancer, this is disappointing, but not surprising. We just hoped it would either never come back (obviously) or take longer, especially since things have been looking so good and I've been feeling so well.

What's Next?

This is actually really cool. There's a medication that we've been keeping our eye on for several years. It was approved by the FDA at the end of 2014 for women with ovarian cancer AND a BRCA gene mutation, who have already had at least three lines of treatment. Basically, exactly me. And - get this! - it's called Lynparza. I'm calling it LYNNEparza! It inhibits the PARP enzyme that's needed along with the BRCA gene to repair the cancer's DNA. When both of those processes are blocked, the cells die. (Cell death is called apoptosis - "ay-POP-toe-sis" - one of my favorite medical words!)

I'll take 8 medium-sized capsules twice a day. Typical side effects are mild fatigue and low level nausea. And annoyance at taking so many pills, but they left that out of the literature. 

I started Monday, and so far, so good. Although I'm working on a theory. Right now, I'm calling it the anxiety effect, and it looks like this: am I extra tired while walking my dogs because I had a busy week and didn't sleep enough, or is it the med? Am I a little nauseous, or am I nervous about side effects? Am I extra thirsty because we had pizza last night, or is it the med? Eye rolling abounds.

We'll do a CT scan in a couple months to see if it's working. If it is, that's fantastic, and I'll keep taking LYNNEparza indefinitely, as long as it works. If it's not working, then we'll talk about other options, including clinical trials.

What do I need?

Please pray that this medication works. 

In the meantime, I'm carrying on with life as usual. Maybe a little slower, if the fatigue kicks in. I am going to summer camp with the teens next week... you can pray for that, too, because it's intense and you never know what will happen! 

How are we doing?

Well, this is our fifth time around. So we've been over the scary "what ifs" a bunch of times. The first week was an unsettling review of those questions and our answers. We don't know how well this treatment will work, so we're just standing on the foundation of our faith: that God is good, that there is a plan and purpose in this, and that we trust him. This is a reminder to love our people and live our lives well, whether we have months or years left. After all, no one really knows how much time they have left.

Honestly, I am really OK. A little annoyed to be back in treatment when I was just starting to feel like life was back to normal. But this med could work for a long time, so I don't see any need to panic or make big life changes.

FAQ in case you're wondering... :)

Are we SURE it's cancer?

I'd say 99.9%. I asked my oncologist this. I was very happy to hear she had already asked the radiologist. One of our best radiologists is convinced it's more ovarian cancer. She's looked at most (maybe all) of my CT scans, so she knows more about my insides than anyone except God and maybe my surgeon. And she knows how ovarian cancer presents. 

Should there be a biospy?

We could biopsy a spot or two, but the areas aren't easy to access. So rather than spending time on further investigation that wouldn't sample every spot and that would be fairly risky, we're starting with the medication. This way, we start attacking everything seen or unseen anywhere in my body.

Why not surgery?

Typically, ovarian cancer comes back the second time as a "white wash" of small areas all over. This is the fifth time (!!!) for me and this time, it seems to be headed in that direction. The assumption is there is more that we can't see yet. (I believe this CT interval was at exactly the right time: late enough to see something, early enough not to see much.) Instead of wasting time prepping for and recovering from surgery, we're starting something that will address cancer cells throughout my system.

Why not chemotherapy?

Because, UGH! No, thank you. But technically, this is a chemotherapy, too. I have the same taste in my mouth already. :( The cancer has survived in spite of the six chemo drugs I've had already had, so going back to them doesn't make sense for me. There is another option or two, but it's less likely to work than the LYNNEparza.

Are we sure this is the right treatment?

I have no doubts about this medication. It is something we wanted to try earlier, but it wasn't available yet. I've had conversations with my surgeon and my former oncologist about what we'd do if the cancer came back, and it was what my new oncologist concluded as well. Results have been good for others, so I believe this is my best bet at this point.

I think that's everything - let me know if you have other questions!

Thank you all for your love and support. Here we go again...