This is Getting Old

My oncologist called with my CT results, which are somewhat inconclusive. 

One area we had seen before is smaller, one is larger, there is less fluid floating around (a good thing), and there are a couple enlarged lymph nodes that could be enlarged for many reasons. There is no clear explanation for my pain or nausea. 

Next week I will meet with my surgeon and my oncologist to strategize about next steps, which could include surgery and/or clinical trials. Because one area shrank and one area grew, it's unlikely we will continue with the current chemo regimen.

Thursday night I had more back pain and vomiting that I couldn't get under control at home, just like what had happened on Monday night. When Mike got home from work, he took me to the ED and they admitted me to get a better plan to control my symptoms. We are making progress. I think we have the meds figured out and now we are refining the doses so I don't end up back in this situation again. I will probably go home Saturday. I'm getting great care and horrible food - better than the opposite, that's for sure!

It's felt like a long two months since the CT scan that showed this latest recurrence. We are tired and frustrated and ready for a treatment plan that works. I think there have been more complications and hassles in these last two months than in the past five years, and it's getting old. 

But as always, your loving care and encouragement and prayers buoy us up. Thank you so much for everything you do. Please continue to pray for my blood, particularly my platelets (which have dropped instead of rising since my transfusion on Monday - odd). We would also appreciate your prayers for wisdom and an excellent plan for the next phase of treatment. And that my pain would resolve so I don't need to continue those medications for very long.

Have a good weekend, everyone! I hope you have lovely spring weather wherever you are.

Random Acts of Kindness FAIL

Hello everyone.

First, a cancer update:

On Tuesday morning, I went to the clinic for an unscheduled visit. I'd been having pain all around my waist for a couple days, and Monday night it got worse and I was also nauseous and couldn’t keep anything down. Needless to say, I was pretty miserable. 

We spent a good chunk of Tuesday at the clinic. They gave me three kinds of IV anti-nausea meds, three doses of IV pain meds, and 1.5 liters of fluids. Plus lots of TLC and a nap. (If you're interested in the meds: zofran, dexamethasone, ativan, and dilaudid - so I had some energy from the steroid when I got home - hurrah! - and a good sleep thanks to the ativan and dilaudid.) 

I left feeling a WHOLE lot better - like a new person!

But without any answers.

We aren't sure what caused the pain and nausea. Pain could be anything from soreness due to the immune-boosting shots I got over the weekend to cancer growth. Either way, it was certainly made worse by all the vomiting! The nausea is a bit of a mystery... perhaps just an out-of-whack system that couldn't self-correct.

Next step is a CT scan on Thursday morning at 8:30am, which will tell us more. We'd been debating on whether to scan after the second or third cycle of chemo, and this helped us make the call. (I just finished the second cycle.) The results should be available sometime Friday, and then we'll make a game plan based on the scan results.

Thank you so much for your prayers!!! 

Please keep them coming, especially that the results of the CT scan will show the cancer has shrunk dramatically and the pain is unrelated. As always, pray for my blood counts to recover.

Please pray for Mike, too. He has been a champ, trying to keep me comfortable, getting up with me throughout the night when I was sick, and just being sweet and understanding. He gave up both of his days off this week to sit at the hospital with me. Today, he’s called me from work three or four times for “proof of life,” making sure I’m OK. For the first time in my life, I’m using narcotics for pain outside the hospital, so I’m JUST FINE!  haha.

Second, some entertainment:

Several years ago, one of my closest childhood friends declared her birthday Random Acts of Kindness Day, and asked all her friends to help her celebrate her birthday by doing a random act of kindness. What a beautiful and amazing idea, right? I love it, and she has done it every year since.

As usual, I planned to participate. I wasn’t sure how, but kindness shouldn’t be too hard, right?

Well, I pretty much failed. Crashed and burned, actually.

My day started with yet another blood draw at the hospital. I arrived on time, and was entertained during my wait by a woman in the waiting room who was all decked out for St Patrick’s Day (a week late). She was about 80, in a wheelchair, sitting near a man who was a bit younger. He was going to read a magazine, but she said he should talk to her instead. He agreed and she told stories of her dating days and then they compared notes on whiskey and mixed drinks.

The nurse came out to get me, said a warm hello to the lady, and then said to her, “I’m going to get my friend [me] first, then I’ll come and get you, OK?” Which we all immediately realized sounded absolutely horrible and wasn’t what she really meant. This nurse is outstanding and fun and sweet, so I don’t think any harm was done.

During my blood draw, we were discussing the Acts of Kindness assignment. I was hoping she’d give me a brilliant idea, but we didn’t come up with anything. Instead, she jokingly concluded that since I am kind most of the time, perhaps I should do a random act of UNkindness. 

After we were done, I walked away, but after about two steps, I saw the lady in the waiting room, turned around and went back to the nurse. I realized my Act of Kindness SHOULD have been to insist that the lady have her blood draw before me. So we had a regretful chuckle over that.

Oh well. Can the after thought count???

I had to stay for a blood transfusion, so I was a more than a little grumpy because my friend from out of town had arrived and I wanted to get on with my weekend, not spend another couple hours in the infusion chair. Grr.

Still, in spite of the grumpiness, I was kind throughout the transfusion, just not in a random, unusual way.

On my drive home, I decided to practice one not-really-random, not-really-kind act of kindness:

I decided to completely stop at all the stop signs and make sure the correct person went first.

(To my Mom and any law enforcement peeps, please skip ahead a few paragraphs.)

Let me explain. I am not very literal about stop signs. On Friday, I realized that, at a four-way stop with other cars, I usually do the most efficient thing, not the most polite thing. For example, if you’re next and opposite me, and you’re going straight and I’m turning right, I’m just going to move into that right turn because I know I’m not getting in your way, and then everyone can move through the intersection more quickly. Very considerate, right?

I also get a little agitated when everyone just SITS there, wondering who should go first, so I “volunteer” to take action first in those cases.

But on Friday I stopped and patiently waited my turn. Even waited for others to go first. It felt leisurely and kind of good.

I acknowledge this is a completely lame act of kindness. But I learned something, so I figure it had some value.

Now, my friend had been waiting downtown for a couple hours, so I flew into the house, gathered a few things, and joked that my Random Act of UNkindness was asking Mike to drive me downtown to meet my friend on Friday afternoon, in rush hour traffic BOTH WAYS. He was very gracious about the whole thing, even when he was pointing out my uncharacteristically unkind thoughts and actions while we were driving. Nothing big, just little things that were unusual for me and kinda funny because I was still searching for my act of kindness.

I never did come up with a good random act of kindness that day. But I was mostly kind in my general way, in spite of my mid-day grumpiness. Still, I’d give myself a D- for the day. Humbling!

May your days - and intersections - be full of kindness this week!

I’ll update over the weekend, after I get those scan results. Today, I found a great verse for facing my anxiety-generating CT scans: Psalm 112:7 says “She will not fear evil tidings; her heart is steadfast, trusting in the Lord.” With God’s help, I won’t fear bad news… a very tall order! One I cannot do on my own. Thank you for your prayers!!!

How ARE You?

The most common question I get these days is “How are you doing?” 

Honestly, I’m not sure how to answer that!

Physically, for going through chemo, pretty good.

Physically, for feeling like a normal person, usually far from it.

I don’t have a lot of the usual chemo problems, like aches or nausea, and I’m really thankful about that! My mouth does taste like I’ve been eating rotten eggs about half the time. Blech. But my appetite is fine and things taste like they should.

I do have a lot of fatigue. Somedays, it’s not bad and I can stay pretty busy. Other days, I need to sit down and rest while I’m getting ready in the morning (who knew a shower was so exhausting?! It’s ridiculous and lame, but it’s real). After chemo, I usually have one day when I sleep most of the day. Every day I debate over whether I’m doing too much or resting too much. I usually err on the side of resting too much. I figure I should ease up and let my body rest and heal. But there’s definitely some fear in there, too, about doing too much, hitting a wall, and having to keep going anyway, which is a challenge.

And there’s my hair. It’s only supposed to thin. But when I wash it and brush it, I lose a LOT of hair. Being bald didn’t bother me before, and I really liked having short hair, but seeing all that hair in the shower freaks me out. Still, I don’t have any bald spots or anything, so I don’t think it will all fall out…

The biggest problem I’m having is one I can’t feel. My poor bone marrow is so tired, and the chemo is really giving it a beating. Friday I had another red blood cell transfusion (those are the oxygen carrying cells, so that accounts for some of my fatigue). I am getting shots each cycle to boost my white blood cells (immune system). Sometimes those shots don’t affect me, sometimes they make me ache like I have the flu. And, of course, my platelets. I could tell you were all praying for me because before chemo last week, my platelets were 186K! That’s well in the normal range and I don’t think my platelets were that high even before I got cancer. Plus that was a big jump in a small amount of time. Friday, about ten days later, they’re at 61. I’ll hit the low point on Tuesday and may need another platelet transfusion. There's no rhyme or reason to how the numbers rise and fall, so we can't predict anything, just draw blood and see. I am TIRED of blood draws (but, truly, that's me being whiny because it's not that bad and there's much to be grateful for).

On the other hand, emotionally and spiritually I’m doing just fine. 

I’ve decided to read though the book of Psalms each month for awhile. Since that’s all about struggle, refuge, and deliverance, it’s keeping my focus in the right place.

This time off from work has been a gift. It has coincided with a few unexpected demands from other areas in my life, allowing me to devote time and energy that I couldn’t if I were working. 

I really like my new doctor. Last week we had to do some strategizing about my blood counts and how to monitor and manage Them, particularly since I have a friend in town this weekend and I want to minimize any medical concerns and feel my best while she’s here. She did a great job of outlining the options and making a decision with me. Hurrah! 

Mike is an absolute gem. He has a great sense for when I am getting to the end of my energy and is so sweet about taking over for me at the right time.

Up next for us: blood draw on Monday to see if I need shots or transfusions. Possibly having my “port” replaced on Wednesday (it’s an under-the-skin easy access to my veins; I’ve had this one for four years and it’s getting temperamental). And chemo - cycle three! - on April 4th, assuming my blood counts are substantial enough - so please keep praying for that!

Have a great week, everyone.

Super Short!

I met with a new doctor today - as I hoped and expected, I liked her and am going forward with her. What a relief to get that settled!

My blood counts are looking better - my platelets went from 65K on Monday to 115 today! I was expecting around 85-90, so that was a pleasant surprise - thank you for praying for that!

We're going to start again on Tuesday (3/14) and reduce the doses of Carboplatin and Gemzar by 25%. So keep praying for my blood counts to withstand the chemo and for my anti-allergy plan to work with the Carboplatin. I expect 3/14 will be a long day.

Thursday and today I had a lot of energy - even enough to do a little clothes shopping! (The selecting and trying on part of buying clothes is exhausting on so many levels!) So that was a really nice surprise. I might have done too much, though - I'm feeling pretty worn out tonight, but it was worth it.

That's all for now - nothing profound or even mildly interesting, haha! Oh! Except for tonight's adventure - watching a lovely, much-admired young lady get married.

Congratulations, Nick and Megan!

Have a good weekend!

Spotlight!

On Friday, my poor platelets were up to 65K! I need to be at 80 to start treatment again, so I expect we’ll start again next week. We will check them again on Friday when I meet with a potential new doctor. After I meet with her, I can resolve who my doc will be going forward, so you can pray for wisdom and clarity about that. Then I’ll develop a revised treatment plan with the new doctor.

I had a nice surprise on Saturday evening - an email from the lead pastor at our church, asking if he could incorporate a little of my story into his sermon on Sunday! Obviously I said yes - with a blog that I share on Facebook, I’m clearly not feeling too private about this. Haha.

Well, he read TWO PARAGRAPHS from my blog! I figured it would be a 15 second mention, but it was a lot longer (felt like forever!). I’m not going to give anything away, but I’ll give you the link to the message. (He's a little off on the timeline, but that's not critical to the story.)

You can watch or listen here: http://subsplash.com/chcc/v/wvmlelk. 

When do you have time to listen to a 40 min message?? My tip: If I miss church, I listen to it as a podcast in my car (Canyon Hills Community Church). Besides my spotlight, it’s a great message about Jesus’ compassion for those who are suffering, and how we can both have compassion and find hope when we suffer through different things. If you want to fast forward to my moment of fame, it’s at 58:17 on the video, and 12:54 on the audio.

Enjoy!

These Bones Will Sing

I’ll just jump in with updates on my prayer requests from the last post. Please keep going with these!

That these drugs will be effective.

So far, they seem to be! The symptoms that I was having before the CT scan are gone, which is a great sign.

That my blood counts will be minimally effected and recover well.

Well, this is kind of a big problem. A known problem, but bigger than I expected.

Before chemo, my counts were in the normal ranges. Then they plummeted after the second dose of the Gemzar. The most dramatic drop was my platelets (essential for stopping bleeding and forming blood clots). Normal platelet counts are 150-400 (thousand). Before my second dose of Gemzar, they were 110. Ten days later, they were 8. Only eight. We call that a critical low - highlighted in pink, not yellow on the print out, action required urgently. My white blood cells (immune cells) were quite low as well. 

We boosted the platelets to 47 with a transfusion yesterday, and I’m getting a series of shots to stimulate the white cells. We will recheck on Monday, but for sure Tuesday’s big chemo day is canceled. I expect we’ll wait a week while my poor bone marrow pumps out more of all the various blood cells, and then start again with just the Carbo and Avastin and say “Sayonara” to Gemzar. But that’s just my guess - my doctor hasn’t talked to me about anything past getting the blood counts back up.

That we’ll be able to get around my allergy to carboplatin.

The first round was uneventful, probably because it’s been a few years since I’ve had this drug and those immune cells have sort of gone into hibernation. Now that we’ve teased them out of their slumber, we expect a reaction next time. I forgot what a complicated regimen of allergy-suppressing meds we used before to get around the allergy, but my doctor dug it up and I’m ready to go. Fun times ahead.

That these drugs won’t beat me down too much - for strength and energy.

I actually feel BETTER on chemo than I did on the Lynparza! I am amazed. Perhaps in part because I’m not pouring all my energy into working, but your prayers for side effects to be minimal have been VERY effective! I kept waiting for the big crash, but it never came. I have to ration my energy, but that’s do-able since I’m not working. This weekend I am feeling really achy, though. It’s a side effect of the shots to boost my immune system, so at least it’s temporary.

That Mike will have the strength, patience, and peace to walk through this with me.

That our spirits will be encouraged and we will not be discouraged on the tough days.

These two go hand-in-hand. We’ve had some rough patches, mostly related to the headache of working out the details of my leave from work and getting things scheduled. I will spare you the gory details because I’m totally over the frustration. I’m also (finally) definitely switching doctors, so while it adds some extra angst, at least I have a clear direction.

Encouragement abounds from all of you, your sweet comments and prayers and all the things you do to help us out. We are grateful!

Deep Thoughts

Lately, one of my favorite songs is “Great Are You, Lord” by All Sons and Daughters. It’s on my playlist and we sing it often in church. Here are some of my favorite lyrics:

“It’s Your breath in our lungs

So we pour out our praise to You only.”

“All the earth will shout your praise

Our hearts will cry 

These bones will sing

Great are You, Lord.”

[If you haven’t been in a Protestant church in awhile, singing in church is kind of like a karaoke concert, complete with a band on stage, lights, lyrics on screen, and everybody sings. Depending on where you go, there might be some dancing, too. It’s a long way from the organ and hymnals of my youth!]

Anyway, I expect my take away from this song is a little different than most people.

As my bone marrow has struggled to keep up with treatment, the thought of my bones singing praise is hopeful, exciting, and encouraging. 

I think about breath, too. Last fall, when my red cells were so low that my body wasn’t getting the oxygen it needed to do basic things like walk around the block, I lost my breath easily. And when you live with stage 4 cancer, you occasionally contemplate the total number of breaths you have left. Not to be morbid, just a necessary reality that can stimulate more purposeful living, so I see it as a benefit.

When I hear this song, I’’m reminded that all of those breaths, the every day ones and the hard-fought ones, come from God. In a more general sense, I think about the creation stories, where God breathed life into Adam and Eve - and each of us. And I’ve heard that “Yahweh” (a name for God that the Jews wouldn’t even spell completely due to respect and reverence) is thought to be tied into our breath: “yah” when we breathe in and “weh” when we bring out. (Something to contemplate during yoga!)

I am thankful for my breath. I am thankful for my faith and my life. I am working on using my breaths for things that matter, and not spending too many of them on things that don’t. But I still think it’s OK to use some of them to enjoy fluffy things like The Voice and Thin Mints and puns.

Here’s a link to the video if you’d like to listen to the whole song: https://video.search.yahoo.com/search/video?fr=dss_yset_chr&p=great+are+you+lord+lyrics#id=0&vid=806a23a6d7b2747501eeaae5488db843&action=click

Wishing you grace and peace for your week!