Guest blogger

Hi all, it's Bethany here - Lynne's sister and guest blogger. Lynne's a bit tired so I'm posting for her.  Here's an update on her health. Couple weeks ago she wasn't breathing well so she went to the hospital ... turns out the tumor had grown and was pressing on her kidney, which impacted her oxygen levels. Then she got a nasty infection. After nearly two weeks she's back home and on antibiotics and a weekly chemo regimen. In other news, she's getting incredibly loving support. She reads every one of your messages so thank you for texts, emails, FB messages, voice mails and cards. Last weekend her parents, sister, brother and their families did the annual ovarian cancer walk in Minneapolis for "team Auntie Lynne."

And Mike is absolutely the best caretaker you could ever hope for - he juggles phone calls, appointments, multiple meds, temperature monitoring and prepping bags of nutrition that reach Lynne via a port in her chest - truly unbelievable. 

Much improved!

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Much Improved!

9:53AM 8/10/17

Updateclick to collapse con

(Please forgive the weird formatting - I'm on my phone and tried to cut and paste from CarePages and I'm not going to try to sort it out - Sorry!)




I had my 2 week post-op appointment on Tuesday. I was so dehydrated and weak that I laid on the exam table to wait for the doc instead of sitting in a chair like a normal person. When the doc came in, he muttered his classic,




"Oh boy."




As in, this isn't good.




So: I'm healing well from surgery. Incision looks good and I have very little pain.




But he readmitted me to the hospital. For tests to rule out surgical complications (all is well there). For hydration and nutrients (which have dramatically improved how I feel). And, as long as I am here, they took the stent out. Right in my room: a simple procedure, but I was a big chicken and had some internal (and maybe external...) drama about it. My nurse stayed to watch the procedure and give me emotional support, and it was no big deal.




Since yesterday morning I haven't needed any anti-nausea medication and I've kept my clear liquids down! Today I "advance" to full liquids. Taking it slow. While I'm anxious to eat normally, I'm also nervous about eating solid food because it hasn't stayed down for weeks!




I'm getting IV nutrition in the hospital, and they plan to send me home with 2 weeks of overnight IV nutrition, just to help replenish me and get me ready for the next phase of treatment. Not sure what that is yet - I will keep you posted.




I will be here another day or so. I'll post a more interesting/thoughtful report once I'm not using my phone and have a real keyboard. For now, just the facts.




Thank you for praying for me!!!




Edit UpdateDelete Update

Prayer Request

Will you pray for me to have sufficient energy for the next few days?

My sister Jennifer and her family are in town, and I want to spend as much fun time with them as possible, but I am seriously lacking energy. For example, after my shower this morning (in which I spent a lot of time scrubbing my hair that hadn't been washed since I went into the hospital for surgery - yuck!), I barely had the energy to wrap up in my robe and get back to bed.

Part - most - of this is because I haven't really eaten much solid food in the last three weeks. I also think that stent in my ureter has messed with my appetite and ability to keep things down. Good news is that I should get clearance on Tuesday to have it removed. Surgery and the complication of my bowels shutting down (ileus) just made things worse. I'm sure "sleeping" in the hospital for 11 days didn't help either.

It's been a long month and things just don't seem right. The docs call for patience, but it feels more like discouraged endurance. It's good to be home from the hospital, but I'm looking forward to healing and feeling like I should.

Thank you for your prayers!

Mike is a Rockstar

Well, if you’re not on Facebook frequently, you missed that RATS (really) did something to the power supply at the day surgery center last Tuesday, knocking out power and canceling all the surgeries. Mine was rescheduled for Friday night in the main OR. The days between were filled with jumping through various hoops to accommodate the main OR requirements, which are quite different from the day surgery center. 

Praise: the stent went in smoothly! This means that the cancer isn’t hugging the ureter too tightly and that part of surgery should be easier than expected.

But then…

Instead of the expected smooth recovery from the stent placement, my body tanked. I had a lot of trouble with nausea and couldn’t keep anything down. Sunday and Monday I was at the hospital for IV fluids and anti-nausea meds. Today I got a prescription for a steroid to help with the nausea as well as my appetite and energy. Now the nausea seems to be reasonably under control, I’m eating and keeping everything down, and I folded some laundry today. The lack of energy (as well as the nausea) has been very discouraging and concerning. And heart breaking since I was planning to spend part of the week at camp with those crazy teen girls I love.

Sunday’s hospital visit was in the ER, so I got a new a CT scan. The scan showed that the tumor has grown - not surprising, since we’re not treating it at the moment.

Praise: it’s still one defined mass. No other masses or fluid were noted on the scan.

Prayer request: that the mass doesn’t mess with any other parts of my body and is easy for the surgeon to remove on Monday. And that he doesn’t see anything that wasn’t visible on the scan.

Surgery is scheduled for 7:00 or 7:30am on Monday. We have to be there are 5:30am… at least traffic will be light… It will last for several hours. Mike may post an update on Monday, but maybe nothing until Tuesday.

Through all of this, Mike has been a rockstar. He’s getting me pills in the middle of the night, keeping me entertained and distracted, and sitting in the hospital for hours watching the IV drip. He even made calls to the doctors for me when I was too weak to do it on my own. He’d taken an extra day off for me to be at camp, and instead used it to cater to my whims. He even goes along with my cheers about being able to do small things like shower or get a few things at the grocery store.

A few months ago, Mike and I did a 21 day fast, giving up TV and all beverages except water and tea for that time. Missing those things acted as a reminder for us to pray for my healing. There were structured activities and Bible readings as part of the program. We haven’t fasted before, and we understand that this is more an act of devotion and purpose than a magic formula. It’s a time to focus on something specific and seek God’s purpose and guidance in that area. 

We were almost done with the fast before we had a direction, but (surprisingly?) we both came to the same conclusion, asking if we are focusing too much on what God can do for us, rather than on how we can honor Him. We should be looking at what He IS bringing to the table instead of what He isn’t. We haven’t quite learned this lesson, I have to admit, because I’ve definitely been more focused on what’s not working than on how God has been moving. Although we’ve been very aware of all the blessings coming our way through many, many of you. Goals.

The “results” of the fast have shaken me a little. My faith is still solid, but there is some questioning in my prayers for myself. I guess I was hoping the fast would shift the way this year has gone medically - which seems to be “what can go wrong, will go wrong.” But that hasn’t changed. Which makes me nervous for my surgery. 

But I remain hopeful that this surgery will be the turning point - successfully removing the whole mass means removing the source of pain, nausea, lack of appetite, lack of energy, etc. I’m hoping that, after I recover, I’ll feel normal again - and that will feel like a million bucks! Please pray for that for me - I could really use the encouragement of feeling back to normal. Maybe pray, too, that if that is not the outcome, that I am ready for that. Right now, the possibility of an unsuccessful surgery seems unbearable.

My cousin, who I asked you to pray for a few weeks ago, is recovering slowly. It will be months. Thank you for those prayers, and feel free to keep them up!

Today, his dad (my actual cousin) posted an update and shared that his prayers in the midst of their crisis have seemed sparse and ineffective, and that, in crisis, it’s OK to lean on all the other praying people who are more coherent and attentive in their prayers. So please be that army for me - truly, I know you already are - and petition our great God on my behalf for this miracle of a successful surgery. Because it really is a miracle at this point in my disease. Will you be diligent about praying for that between now and Monday?

Thank you from the bottom of our hearts!

Much love, 

Mike and Lynne

This Week (Just Medical Stuff)

Fourth of July at the baseball game. We got a free hat!

Surgery was moved (as previously mentioned) to Monday, July 24.

However, this week is not procedure free. Tuesday (7/11) I am having a stent placed: it’s like a straw to keep the tube between my bladder and left kidney open. If all goes well, it will be quick and easy. If the cancer is hugging the ureter too tightly, I’ll have to go to a different department and they’ll go in from a different angle (through my kidney, as I understand it). That could happen the same day or a different day.

Afterward, I may feel nothing, or I may be uncomfortable… like having a UTI…

So let’s pray for the first approach to be successful and for minimal discomfort afterward!

I may see my medical oncologist this week, too. I’ll call Monday morning to see what they think. I’ve struggled with increased pain, nausea, and fatigue for the past several days. That’s frustrating because it interferes with my plans. And it’s concerning because it might mean the cancer is growing. But then I remembered something that happened Wednesday that could be responsible instead of cancer growth.

(If you get queasy, I’m about to give you TMI involving my visit to the colo-rectal surgeon, and you can skip to the next paragraph.) While delaying my surgery was upsetting, it does give me time to get a colo-rectal surgeon in the OR on surgery day to repair the hernia at my colostomy site. I’m meeting with two surgeons, just to be sure I have a better chance of the schedule working out. (Here’s the gross part.) My hernia has allowed some of the bowel into the space between my abdominal muscle and my skin. It’s not uncomfortable, but let’s get that fixed as long as I’m in the OR, right?! Because that’s gross. Well, on Wednesday I met with one of the surgeons, and he massaged the bowel back to where it should be. Weird! But I think that would have made the area around my cancer a little more crowded, so maybe that’s why there’s pain, rather than more cancer.

OK. Gross stuff is done.

My friend/former oncologist suggested updated imaging based on my symptoms so there aren’t any surprises during surgery. She’s probably right, but I just want to get to surgery, get in there and take out as much as possible. Plus - so many scans!

Meanwhile, I’ve self-doctored by adjusting my pain med, which helped a lot. This isn’t quite as rogue as it sounds since my doctor and I discussed this option awhile ago in a different setting.

All that to say, there are lots of balls in the air in preparation for this surgery and I don’t want to be in charge, but I think I need to stay on top of everything to make sure it all comes together. Good thing I have all that project management experience on my resume…

That’s it, I’m afraid. No inspirational thoughts because I’m tired. Tonight I had six lovely thirteen year old girls over for book club, and there was a moment when I said something like, “OK, I can be done now if you’re done paying attention.” Followed by a few uncomfortable seconds of silence before moving on. Always effective, but I hate pulling that one out. It’s pretty rare. But, needless to say, those munchkins I love made me work hard tonight!

Have a good week! May YOU be the inspiration to someone! 

Soul Retreat

Surgery Update

My surgery has been pushed out to July 24th. Why? My surgeon wants to have a vascular surgeon in the OR with him because the tumor is pushing against the common iliac artery (the main pathway for blood to travel to the legs). Just in case things get tricky, he wants the vascular expert there. So when “surgery day” is Monday and doctors take vacations, things get pushed out further faster.

Fortunately, this also gives me time to get a GI surgeon on board. There’s a hernia at my colostomy site, so I figure, while I’m under and open, we might as well get that repaired, too.

Naturally, there’s a level of panic that sets in, knowing the tumor nearly doubled in the 10 weeks between CT scans, and now we’re giving it two MORE weeks to grow unchecked. 7/24 is six weeks from the last CT. More opportunity for things to pop up elsewhere. More opportunity for the tumor to get more complicated with the surrounding structures (it’s also wrapping around my left ureter - the tube from the kidney to the bladder - so I’m getting a stent put in to keep it open and make it easy for my surgeon to identify the ureter during surgery and avoid complications).

So we pray that the tumor stays put. Preferably no growth. But definitely keeping its hands to itself so there aren’t complications either before surgery or when we finally get to surgery. And we pray that when the surgeon opens me up, he doesn’t see cancer anywhere else. It’s possible he will see things that aren’t visible on the CT.

FAQ

How can this still be ovarian cancer if my ovaries were removed back in 2012?

I don’t get asked this often, but I suspect it’s a common question, especially based on comments my patients make about their family history.

Think of a patch of dandelions in one corner of your yard. They pop up overnight, don’t they? Imagine the yard is your body and the dandelions are cancer. These dandelions are in your wildflower garden, and they’re ALL OVER it. So pulling out the dandelions ends up pulling out most of your wildflowers - kind of like how removing my ovarian cancer involves removing my ovaries.

After some time has passed, even though the wildflowers are gone, those dandelions might pop back up in the same place. Because even if you used weed killer, you missed a persistent root or two. 

Worse, if one or more of those dandelions went to seed, you may find dandelions elsewhere in your yard.

So even without the tissue of origin (the “wildflowers,” or ovaries, in my case), the ovarian cancer can come back. It’s still ovarian cancer because it is part of the original cancer - microscopic cells that survived all the forms of treatment. Radiologists and pathologists look at imaging and actual cells and can tell from the appearance of the cancer what kind it is - even if it’s far from the original location.

Cancer can come back at the original site, or it can come back further away - like the dandelion seeds that travel across the yard. When it comes back further away, it has traveled through the body, usually through the blood stream, and settled in a new location. We call this metastasis - or just “mets” for short.

Different cancers like to go to different places. Ovarian cancer most commonly stays in the chest and a abdomen and makes its new home in organs like the bowels, liver, and lungs. Breast cancer tends to gravitate to bones, brain, lungs, and liver. At work, it’s common for me to hear that a patient’s relative had breast cancer, and also liver and brain cancer and then passed away. Most of the time, what they’re really saying is that the breast cancer metastasized - or traveled - to the liver and brain, and the death was due to the effects of the breast cancer on those other organs.

Helpful, I hope!

Soul Retreat

For many months, probably over a year, I’ve been wishing for an opportunity to get away for a few days on my own to dig through three boxes that have remained largely unopened for more than 20 years. They contain old journals and letters from my high school and college days. I even kept copies of some of the letters I wrote, thinking they’d be valuable someday when it was time to tell my life story (even in the days before YouTube, did all teens dream of fame??).

But I hadn’t mentioned my idea to anyone - not even Mike. 

Well, a couple weeks ago, a friend offered me a few days at Lake Chelan (in central WA) since her family wasn’t going to stay for the entire week and they couldn’t get a refund.

The view from my morning walk.

WOW! Mike had to work, so this was the retreat I’d been wanting! What a wonderful gift! I went earlier this week: Tuesday through Friday.

I was a little worried that I was opening Pandora’s box: no doubt embarrassing moments, hopefully past memories to me laugh and feel all the best feels, things I’ve forgotten and don’t want to remember, potential disappointment in my young self…

Overall, it was a little weird, but not as bad as I thought it would be. I got through most of my journals and none of the letters, but now the ball is rolling and I’ll carry on in my spare time. Once I’m done, I’ll probably share the highlights with you. Just wait!

In Summary: Prayer Requests, Please

1) That the cancer stays in its well-defined mass until surgery. No growth, no messing around with nearby structures.

2) That the planning and advance procedures go smoothly.

3) Both my cousin and my friend’s brother were in very serious accidents this week and are in ICUs fighting for brain function and mobility (respectively), so please direct some of your prayer time for me to their healing and their families’ peace and endurance.

Thank you! Have a safe and happy Fourth of July!

Going Back to Ground Zero

Hello, everyone!

Thank you for waiting. I know how hard it is to wait!

My CT scan was not what we’d hoped. Since March 30, the tumor has grown from 5.2cm to 9.3cm (about 3.5”) - close to double in size. So clearly the Avastin was not working.

However, there isn’t any other visible disease. This is REALLY unusual. Almost always, ovarian cancer comes back splattered all over the place. But once again (for the fourth time, actually), we have a single, well-defined tumor.

Which makes me a candidate for surgery! 

We love this option because we know surgery can remove the cancer. Right now, all the other options are in the “try it and see if it works” category, usually with 20-30% chance of keeping the cancer from progressing for a few months. So surgery sounds pretty awesome.

My surgeon says this will likely get me back to “ground zero,” where a CT scan won’t recognize any disease. To me, that translates into buying a lot more time.

There are some risks and complications. The tumor, which is in my left lower pelvis, is pressing on my iliac artery and my left ureter. Plus I’ve had radiation in that area, so the tissue is stiff and harder to work with than normal tissue. However, my surgeon is outstanding and has a team of other specialists on hand, so if anyone can do it well, it’s him. And then I’ll pull out my healing super powers and I believe we’ll have a good result.

Surgery is scheduled for Monday, July 10. (I have to wait at least a month after my last dose of Avastin before any surgery because it slows wound healing.) I’ll be downtown with my high-rise view, room service, and outstanding nursing staff, so if I have to be in the hospital for 3-5 days, this is the place to do it. Please be praying that the tumor maintains clean margins so it’s easy to remove.

After surgery, the tumor will go to the lab for more testing. Based on the testing and on what my surgeon sees during surgery, we’ll decide what to do after that. We expect he’ll see tiny cancer implants that are too small to show up on the CT - but it would be super awesome if he didn’t! Something else to pray about.

Emotionally and spiritually, we are doing well. I’ve been feeling really good for the past few weeks, but Mike said he was expecting bad news because he’s seen me struggle over the past few weeks. So who knows, but while we’re disappointed that the area has grown, we’re really excited that it can be removed. It’s a strange answer to prayer: still growing, but in a way that allows us to pursue an option that’s known to be effective.

In other news...

Last week I met my cousin and her family for brunch. They live about an hour away, but we don't see each other often. Busy lives and all - you know how time can slip away. Now they are moving a couple states away. I'm sad to lose my "local" family, but I am SO excited for their new adventure, and I think God has uniquely prepared them and given them an incredible vision for this venture. 

These are the kind of people you put on your calendar and think, "I am so privileged to get to hang out with THEM!" They love God, they're thoughtful and compassionate and smart and taking action to make this world a better place. 

I mention them because after brunch they gave me this little cross made from olive wood. It's so sweet in it's simplicity and as I keep finding it in my purse, I'm reminded of their love and care for me and God's love and care for each one of us. Maybe especially God's love and care for ME right now as I keep walking along this cancer-paved path.

That’s it for now. My parents arrive tomorrow for a six day visit. I think we’ll keep it pretty mellow at the beach cabin they rented… which sounds like heaven.

Thank you for your prayers and support!! We love you all.

CT Scan Monday

First, I’m having a routine CT scan on Monday morning. I’ll meet with my doctors on Tuesday and Wednesday to discuss the results and make a plan. So I’ll probably post results on Wednesday evening once we have everything sorted out.

Please pray for this scan! Of course, we’re hoping it will show no cancer, or less cancer than before. Or even the same amount as before. Anything but growth since the last scan. More than that, please pray for our peace of mind. These scans are, honestly, kinda terrifying, and so we do a lot of worrying and a lot of praying. It’s been an emotional year so far, and it would be really nice to have some good news now.

Overall, I’m feeling pretty good. I’m learning to pace myself. I feel like most of the effects from the other, harder medications have worked their way out of my system, and I’m finally feeling like I thought I would when we cut out everything except the Avastin. Which is pretty fantastic compared to how I’ve felt since last fall. 

Some days, like today, I get up and my body just says, “NOPE. I got nothing for you.” Sometimes I have to push through, but today I skipped church and did a lot of nothing all morning. Thankfully, that earned me renewed energy for the rest of the day. Good thing, because I had my "student life group" over this evening and I had a lot to do to get ready for them. A wonderful friend came and vacuumed for me, Mike mowed, and I washed and walked the dogs. And made guacamole with cilantro from my little container garden! (I feel so earthy!)

One of my highlights since the last time I posted involved s’mores. It happened like this…

There are a few families who have been part of my central support throughout my cancer treatment. They are part of my “Life Group” from church (it’s a big church, so they encourage small groups as a way to build community and not get lost in the sea of people). Three of the families had kids in elementary school when I was initially diagnosed, and those kids have prayed for me pretty much every night since then. Now the kids are in middle school and high school. I’m close to some of them, but the middle school boys… often it’s a little awkward to make eye contact, much less conversation, you know?

Recently, their moms and I had a rare gathering without kids or husbands. I told the moms I wanted to thank the kids, but I wasn’t sure how to do it. How do you say thanks for such an enormous gift? 

One of the moms suggested s’mores at her house, and our plan was hatched.

Of course, two days before our s’mores date, I decided I needed to give them something, but had no idea what, especially on a limited budget. I think a week at Disney would be an equitable thanks for all their prayers, but I can’t even send myself to Disney right now, so that was off the table.

After some casting about, I made these little prayer boxes. I tucked some cards inside: how they can pray for me, how I am praying for them. And I gave them a homemade thank you card, which I thought turned out particularly well!

The card says, "When I pray, You answer me. You encourage me by giving me the strength I need." 

Psalm 138:3

Even the opportunity to talk to the kids happened pretty organically. There was a moment when most of the kids were around the fire, so I kicked the adults out, gave my little thank you speech (including that Disney was my first choice, but alas), and handed out my meager-but-heart-felt gifts. It was short and sweet, and after a brief awkward transition moment, we were roasting s’mores again and laughing about weird things at school.

I told them I don’t think there’s any theology for this, but it seems like the prayers of children would have a special impact on God’s heart, and I’m so grateful for their faithfulness. It encourages my heart abundantly.

That’s it - until Wednesday evening. Thank you for standing with me in this!

The Specialist

CANCER UPDATE

We are making progress toward a more long term plan. I’ve met with my surgeon, and today we went downtown for a second opinion from one of the top ovarian cancer docs in the country. 

Once all the reports are written and the docs have conferred with each other and with me, we’ll have a plan, but that might take a couple weeks.

We are exploring clinical trials, with the thought that something I haven’t tried yet might be more effective than something I have tried. But today’s expert recommended going back to another one of my original chemotherapies (Taxol) with my current med (Avastin), based on good results from a clinical trial called AURELIA (pretty, right? It’s some ridiculous medical acronym). It’s currently in phase III of clinical trials and seems to be twice as effective as chemo without Avastin, so it’s an interesting idea.

The universal recommendation on surgery is NO. The more you operate on an area, the more likely there are to be complications, and this would be the third time. It’s unlikely they’d get everything, so better to attack everything with medication than do a surgery that might cause me more harm than good.

While we’re making decisions, I’m doing a couple more cycles of Avastin by itself, then a CT scan in mid-June. If the Avastin is working, we may just keep doing that. Or we may change tactics.

I was excited to be on just the Avastin because the side effects are usually very mild. I was planning on feeling good and regaining strength.

HOWEVER…

That only lasted about a week. April was really discouraging because I was expecting to feel good, but instead my muscles and joints were stiff and sore, and got worse the more active I was. And nothing made it feel better. I wasn’t sure if it was the cumulative effects of all my treatment or aging or what, but it bothered me.

Today, the doctor said that can be a side effect of the Avastin! It’s not listed, but I sure would love to have a reason for my stiff and sore body, so I’m hugging this explanation tight! In Europe, they’re finding that half of the American dose of Avastin is still effective, so we’ll discuss reducing my dose in hopes of reducing my symptoms.

Good news: all my blood counts are normal or nearly normal! Hooray!

THE BOTTOM LINE

Please keep praying for…

… wisdom as we choose how to move forward.

… that the paths we choose will be remarkably effective, shrinking or even obliterating the cancer completely. I’m asking for many more years!

… that God will abundantly supply our strength and stamina and joy (because our own reserves are LOW).

… my body to feel better: reduced pain, fatigue, soreness, and stiffness.

THE IMPORTANT PART

Because the Psalms are so full of the real, raw, ugly emotions we feel when we’re going through hard times, I’ve spent a lot of time there over the past several years. For the past three months, I’ve read through Psalms each month (that’s only three pages per day, so pretty easy if you stay on top of it). I see new things each time, and last weekend Psalm 143 stood out to me as exactly what I need right now. So here’s my new cancer prayer:

Hear my prayer, O Lord,

Give ear to my requests,

Answer me in Your faithfulness, in Your righteousness!

And do not enter into judgment with me,

For in Your sight no man living is righteous.

For my enemy [cancer] has persecuted my soul;

He has crushed my life to the ground;

He has made me dwell in dark places, like those who have long been dead.

Therefore, my spirit is overwhelmed within me,

My heart is appalled within me.

I remember the days of old;

I meditate on all Your doings;

I muse on the work of Your hands.

I stretch out my hands to You;

My soul longs for You as in a parched land.

Answer me quickly, O Lord, my spirit fails;

Do not hide Your face from me,

Or I will be like those go who down to the pit.

Let me hear Your lovingkindness in the morning;

For I trust in You;

Teach me the way in which I should walk;

For to You I lift up my soul.

Deliver me, O Lord, from my enemies [cancer];

I take refuge in You.

Teach me to do Your will,

For You are my God;

Let Your good Spirit lead me on level ground.

For the sake of Your name, O Lord, revive me,

In Your righteousness bring my soul [and body] out of trouble.

And in Your lovingkindness, cut off my enemies

And destroy all those who afflict my soul [and body],

For I am Your servant.

Thank you so much for all your love and support! It encourages us in the best ways. 

Have a good week.

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.