Saturday, January 31, 2015

A Recovery List

(I've had several people emailing me about a way to subscribe to the blog. If you'll scroll down, there's a spot on the bottom right side that lets you sign up for the posts to be delivered via email. If you're on a mobile device, this doesn't work so hop on your laptop desktop, sign up, and then they'll shop up via your email address each time I post.)

1. Brian surprised me with a steak for supper Thursday night (purchased from a local butcher shop that we typically can't afford). When I had my tonsils out last year, the doctor told us protein helps you heal faster. It was SO good, and I only felt slightly guilty that I was eating steak while they had hamburger soup.

2. Speaking of my tonsils, I clearly have issues with Superbowl weekend since in 2014 I had my tonsils out. Superbowl 2015 weekend involved a new port.

3. Thank you, Liz, for sharing the good stuff with me. Tylenol was not cutting it. Again, doctors, why do you not think this is painful enough to qualify for something stronger than Tylenol?

4. I had 19 Kids and Counting on TV yesterday as I was snoozing. What is it with the Duggar women (and men)? They are so sweet all. the. time. I mean, clearly, they have the joy of the Lord in their heart and I DO NOT.

5. You people sure do love to read about cancer and hospitals. My medical posts get 800-900 views while my everyday posts only get 200ish.

6. My Facebook feed is blowing up with tears over the Parenthood finale, but I have only watched 3 episodes this season. I'm putting it off because I know once I finish these last few episodes, the Braverman story will be finished forever.

7. If you're snowed in and need some good comfort food recipes, try these 2 soups. They were both delicious: Creamy Chicken Pot Pie Soup (the Parmesan biscuits to drop on top of the soup are easy and definitely worth the effort) and Pioneer Woman's Hamburger Soup (I left out the bell peppers).

8. I may not have slept during my procedure Thursday or Thursday night, but I have made up for it since then. I have slept, slept, and slept some more.

9. I wanted 10 things on the list, but I just don't have anything left to say.

10. Have a great weekend.

Friday, January 30, 2015

4/52: A Part of Me

Remember when I used to have all kinds of unique hospital experiences? I know, that's not really something to brag about, but it's still the truth. I've been in tornado drills with old men and their open-backed hospital gowns, had someone else's underwear be in my hospital bed, etc.

We can chalk yesterday up as one of those hospital experiences that I'd prefer not to repeat.
Turns out I had reason to be concerned about the whole "conscious sedation" scenario because I was awake . . . the whole time. The procedure ended up lasting almost 2 hours, and I was awake for it all. According to the nurse, he gave me enough Versed to "knock out a horse" (exact quote), but I still was awake and talking (and freaking out) for the whole thing. For the most part, I wasn't in pain - there was lots of Lidocaine for that - but it was the strangest experience. I held it together until it was over, but once they started unwrapping me from all the sterile wraps and masks they use, I bawled like a baby. It was slightly embarrassing, and I don't know where the tears came from except it felt a little like I'd just survived a traumatic event.

Side note: Vanderbilt's staff is lovely and their process in general is smooth so I'm not really blaming them for the fact that Versed apparently does not work on me.

I may be very stiff, sore, and bruised, but I'm the proud owner of a power port. I feel like I should warn you there is a graphic picture below so consider this your fair warning.

Before surgery. This is not the graphic picture, btw.

And then after arriving home. This week's photo theme is a Piece of Me so I thought this was appropriate considering I just had a piece removed and a new piece added. 

Do you notice (1) lipstick during surgery and (2) the lovely orange Betadine still on my neck?

I am incredibly stiff and sore (notice the bruises that had appeared within two hours of surgery) and spent last night laying flat on my back not sleeping. There are pretty much two acceptable positions: sitting straight up and laying on my back. For the doctors and nurses who reminded me I would only be "a little stiff and sore" I would like to say that they clearly have never experienced this personally.

Brian and the kids left at 6:30 this morning and won't be home until early evening (and I'm not allowed to drive) so I'm spending the day at home on the couch sleeping (hopefully), blogging, working on my Bible study lessons, and watching season 2 of The Paradise which just became available on Netflix.

Here's hoping your Friday is at least as productive as mine is going to be. ;)

(I've had several people emailing me about a way to subscribe to the blog. If you'll scroll down to the bottom, there's a spot on the bottom right side that lets you sign up for the posts to be delivered via email. If you're on a mobile device, this doesn't work so hop on your laptop desktop, sign up, and then they'll shop up via your email address each time I post.)

Wednesday, January 28, 2015

Good News, Bad News

The bad news is that my port has kicked the bucket and needs to be replaced via surgery tomorrow morning bright and early. The good news is that we figured out the problem early enough this week, and it will not interfere with chemo next week.

My Vanderbilt doctor said (in a more professional way) that not only is the port I have basically an antique, but that it's also on the wrong side which contributed to it giving out several years earlier than expected. 

They tell me this surgery will last about 90 minutes and only uses conscious sedation, not general anesthesia. All I know is, I'd prefer unconscious sedation. 

And prescription drugs.

I am tempted to feel frustrated by this, but instead am choosing to just accept that ports are a part of my life, be grateful Brian was able to take off work with such short notice, and feel lucky that my boss/work place is incredibly understanding. Did I mention I'll also be off work 3 days next week because of chemo? I've managed to work 3 full weeks in about the last 10ish weeks. Okay, maybe slightly frustrated. 

Being in Nashville for appointments provided the perfect opportunity to spend a couple of hours with my friends, Jenne and Kari, which was a welcome distraction. As was rocking their babies, of course!

I'm feeling tired than usual and have managed to catch a cold so I think I'll get comfy and try to rest tonight because tomorrow morning's hospital check-in at 6:30 is going to come way too early.

Tuesday, January 27, 2015

3/52: Light

I've worked during daylight hours this week, and there have been more than our fair share of gray dreary days. This morning we woke up to a bit of snow and a whole lot of sunlight. I put on a hat, jeans and sweatshirt and marched myself out the back door at 7:30. Sometimes I put a little too much faith in my big girl camera instead of taking my time to really set up a shot, but that's okay.

My Bible study group from church put together a bag of family fun for us right before I started the new chemo regimen, and this DIY bird feeder was one of the projects inside. So far the birds aren't crazy about it, but maybe they'll grow to like it.


I'm desperately behind in blogging and sharing pics. Maybe I can get caught up later this week.

Thursday, January 22, 2015

Throwback Thursday - 100th Day 2014 Edition

As I go back through 2014 and catch up on Project Life, I found these pictures sitting on my hard drive never processed or shared. Considering the 100th day of school for this school year is tomorrow, the timing is perfect to share them.

I think Rory is loving her sweet friend to pieces. They are too cute.



This week has been one of work, homework, and little sleep, but blessedly boring. Tonight Brian and Rory are completing their 2nd grade project for the 100th day of school tomorrow, and we'll probably watch last night's episode of American Idol. I'm kind of loving this season. Loving even more that it's (usually) appropriate for Camden and Rory to watch with us. Camden loves the music aspect of it while Rory is caught up in the glamour that is Jennifer Lopez and the fantasy of going to Hollywood. Bless her glitter-loving heart.

Monday, January 19, 2015

The Weekend Lens

(borrowing that cute title from Ali Edwards)

Our weekend was full of lots of good things: sunshine and basketball (which doesn't happen too often in January), overnight sleepover with Addison, Paddington with the family paid for with a gift card (doesn't that make it even better?), church Sunday morning and then a long Sunday afternoon full of NFL playoff games.



Kids are obsessed with basketball right now. Rory got a basketball for Christmas, and Aunt Liz (who his her PE teacher) is teaching them basic skills this semester.




Sharing gummy bears and few rare peaceful, but happy moments together.


 Already scrapped! Credits here.

Saturday, January 17, 2015

2/52: Storytelling

Miss Rory has always struggled with math. Sometimes I think it's all in her head - that she's convinced herself she's bad at math. Other times, I'm not so sure. Calculating money is a pretty big hang-up so we spent some extra time working on it this week, and I grabbed the camera for one quick shot while they were practicing.

Thursday, January 15, 2015

Fend For Yourself

The kids had a "snow day" (a.k.a. it was cold outside and everyone else canceled so our school did too) on Thursday last week. Honestly, the day after chemo I'm still hyped on steroids (a.k.a. mean and cranky) and generally feeling pretty gross (my official definition for that chemo feeling in the pit of my stomach) so having the kids at home all day wasn't exactly ideal.

Brian left Camden and Rory with strict instructions to "fend for yourself." We've been letting Camden especially do a little more of this anyway, and I love watching him. I mean, I love the idea of watching him. I mostly just try not to nitpick on all the messes he makes when he fends for himself.




I know there's a streak of light across his face, but I kind of like it - I'll take all the sunshine I can get on these dreary winter days.

Wednesday, January 14, 2015

Cancer update

I never quite know how much information to share. Some of it seems so mundane, but since I continue to receive emails and texts asking, I will continue to share here. So, just a few highlights:

1. My CA125 went up 11 points to 55 after 1 month on Doxil. Not necessarily encouraging, but I've had many patients and two oncologists tell me this is typical for Doxil and that it is not necessarily an indication that Doxil isn't working.

2. My rash reappeared yesterday morning and by afternoon had spread so I took a steroid. Have I mentioned how much I hate them? They make me feel so sick, seriously almost worse than this particular chemo drug. Good news is that by this morning the rash is about 99% gone so the steroid is effective, and I just might put off taking anymore and see what happens. Shhhh, don't tell my doctor or Becky or my doctor brother-in-law. :)

3. Our second opinion with Dr. M last week went very well. He gave us a lot of information, but was also personable (the personable part is what's lacking with Dr. C). Brian is firmly in the camp of let's go ahead and make the change. I have to say that Vanderbilt seems to be working overtime to please us in the last couple of weeks, and I have no complaints about Vanderbilt so making the decision to change is tougher than it might seem. We've decided to finish 3 rounds of Doxil and then see what the scan says because a change in regimen might be necessary at that point and it seems logical to change doctors at that point rather than right in the middle of a set chemo schedule.

4. My platelets continue to land in the normal range, which is a blessing for two reasons. First, it means that my immune system is not too compromised. Second, I don't need to worry about having the Neulasta shot (which would complicate matters since actual narcotics are necessary to control the pain caused by that shot) and it means I don't have to postpone treatment. My white blood count has been significantly higher than normal, but fell this week to closer to normal.

5. My port is having issues. This could mean I'll have to have it removed and a new one installed, which means surgery. About a week and a half ago I had two newbies spend about 20 minutes accessing it, and they had trouble flushing it and getting blood return. I chalked it up to the fact that they were new. But last week the chemo nurse also had to spend some time making it work and yesterday when I went in for lab work, they had to call in a second nurse to make it work. It's going to be a wait and see situation. I think my doctors/nurses will be willing to work with a finicky port as long as it is functioning, but working with a finicky port is just a tad uncomfortable. A port need/clamp is quite thick and probing around doesn't feel great. 

Okay, that's about it. See? Kinda boring.

In other news, I actually started Project Life 2015. Trying to keep it simple and stay current (because I pretty much have a solid 4-5 months missing from 2014).

Week 1

Week 2, left side

Week 2, right side

Tuesday, January 13, 2015

Tuesday Tidbits

It seems strange to move on with regular blogging in light of last week's events (Becky blogged about it here), but that's part of the beauty of life I think. For better or worse, minutes turn into hours and hours into days.

Last week's reduced dose of chemo was better than round 1 although I still found myself staying firmly planted on the couch for several days. Day 5 certainly seems to be the magic moment when things completely turn around. I kept wanting to push past the side effects, but some things can't be rushed. I missed the weekend activities, but happily went back to work yesterday.

I decided that pop culture was throwing me a bone by having both Downton Abbey and American Idol start new seasons during chemo week - I had plenty of time to watch.

I also managed to burn through the entire first season of The Paradise, a BBC show set in the 1870's (think along the lines of Downton Abbey) last week. It is binge-worthy, but be warned that it ends with a cliff hanger, and season 2 is not available online.

I have been making a strong effort to let Rory help me out in the kitchen lately (oh, so much patience is required). Last weekend while spooning muffins into the pan, she said, "It's such an important job, but I really do think I am grown-up enough to manage it." How could I not let her help after that?

Rory's current favorite activity (besides helping in the kitchen) is drawing. This is her latest. Tell me I'm not the only one who is frightened by Elsa's face here.

My favorite new coffee cup thanks to Brian's parents. If you know me in person, then you know this has been a favorite phrase for years. I'm not sure if Becky picked it up from me or if I picked it up from Becky, but we both say it.

First after-school picture of 2015

Wednesday, January 07, 2015

Kill Cancer Day, Take 4: Round 2

I'm sitting in our private infusion room at Vanderbilt, shoes off, feet propped up, warm blanket covering me, red rimmed eyes as I experience a whole new appreciation for the opportunity to spend today receiving a life-giving poison.

I fell asleep last night with a specific situation on my mind and before I was even fully conscious this morning, the verse from Psalm 46 was echoing through my brain: "God is my refuge and strength; a very present help in trouble. Therefore, I will not fear though the earth gives way and the mountains fall into the heart of the sea."

Over the course of the past few days, a friend went from a breast cancer diagnosis to the news that the cancer has spread extensively through her body with little hope for a cure.

I don't even know that I can call her a friend. We have certainly spoken on several occasions. In fact, the last time I remembering seeing her she met Camden and Rory for the first time and was a little bit star struck at seeing them in person.  We have the same circle of friends, church affiliation, college we attended. She has been a blog reader for many years, and her friends and family are some of the ones who have loved us well through my own cancer treatments. Her family is so, so heavy on my heart. The thought of what her husband and little ones are facing hits close to home. The thought of her sister rushing home to see her hits close to home.

And I have never been more grateful for this plastic tube delivering poison to my body. I sat in the waiting room with tears flowing down my cheeks knowing that we're all just a step away from catastrophe. Will you join me in praying for Bethany and David today?

Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. For I, the Lord your God, hold your right hand; it is I who say to you, "fear not, I am the one who helps you." Isaiah 41: 10, 13

Grateful for a friend willing to brave the cold temps and early morning to help us kill time before my appointment.

And how about this bedhead? Girl must had been sleeping hard!

Monday, January 05, 2015

1/52: Fresh

I completed a Project 365 (one photo a day) for several years, but haven't even attempted that for a couple of years now. I'm going to give Project 52 a shot - just one photo per week. You can find more the information and weekly themes here.

This week's assignment is fresh, and these clean counters and tabletop are my version of fresh. I really wanted to start off the back to school/work week with a clean house and meals prepped/cooked. By some miracle, it actually happened. I haven't been on top of my domestic game since I started work back in August, but these counters are clear at least for today.

And nothing makes me feel like I can take a nice deep breath than clean counters!


Friday, January 02, 2015

Good News

Today I met with Dr. C and discussed my next treatment regimen. The good news is that I'm going to continue on Doxil. The not-as-good news is that they're lowering the dosage, and she is predicting I will have the rash/blister reaction again. We are taking some precautions against it. I have steroids in hand so that I am prepared to combat the blisters as soon as they start. I am to baby my skin big time via a special lotion and mouth wash. I am to not use hot or cold water whether it be ingesting hot beverages, washing dishes, or hot baths/showers. Also, no repetitive movements such as walking on a treadmill, folding envelopes, repeated writing, etc. etc. I can live with all of that.

The other piece of decent news is that my CA125 from December 2 remained basically unchanged from the November 1 number of 44. That means I had a month of no chemo, but my CA125 stayed the same. That is very good news. I don't have the new CA125 number from today.

The plan is that I will go to Vanderbilt Wednesday morning for infusion, and then I am meeting with a brand new gynecological oncologist in town Wednesday afternoon. I don't know that I'm necessarily looking for a change because I am very happy with the treatment and care I receive from Vanderbilt. What I do know is that I miss the small office atmosphere and that it is always good to have another expert review my case. 

The upside to having to be in Nashville for doctor's appointments is that Brian and I try to have coffee or eat at a new or favorite restaurant. Might as well take advantage of the time together sans kids. Today we skipped lunch but stopped at Crema, our favorite coffee shop. 

It. is. so. delicious. We even splurged on a macaroon, and it was amazing.



And best news of all? We scored a babysitter tonight and are going to see Unbroken. The kids get to play with friends; we get to use a gift card for a free movie.

Happy Weekend, friends.

Thursday, January 01, 2015

Hello, 2015

I've spent the last 48 hours in a state of fuzziness as a result of no sleep. Dumb steroids. It may or may not have been the perfect time to convert my 2014 blog posts into a book. There were so. many. words. So. many. pictures.

In those odd, foggy hours, the words and pictures all felt a little useless. The hard of the past couple of weeks overshadowed so much good. Here are just a few things that came to mind when I stopped the negative talk for half a second.
  1. The great snow storm of 2014 immediately following Christmas break, which meant almost a 4 week break. What a fun time of just complete relaxation (although I might have had a slightly different attitude at the time).
  2. The spring break trip to Atlanta
  3. The family trip to Illinois in May
  4. Hosting a youth group for a week in June
  5. Surviving Burgess Falls!
  6. Sending the kids to Gram and Gramp's house for a week in July
  7. A quick weekend with Brian's family at Lake Holsten
  8. Starting a new job
  9. Working at D6 
  10. 4 days at Winshape, including a zip line adventure!
  11. A weekend in the smoky mountains sans kids
  12. A new camera
  13. Birthday trip to Oklahoma with Becky
  14. Thanksgiving with Brian's parents
  15. The surprise lunch and gifts from Brian's new school family
  16. Amazing support from our church family
This post is simply a reminder to myself to stop allowing my medical issues define my attitude. Sure, cancer is hard. And chemo is not fun. And the management of cancer tends to take control of my schedule more than I'd like. But cancer does not equal the sum of my life.

I've never had a word for the year, but our family does often chooses a verse for the year. This one kind of chose me, as they often have. As soon as I read Isaiah this morning, "fear" jumped right out at me, and I was knocked over with the realization that this one word has been creeping into the little crevices of my being. If I let it, fear can destroy everything because fear replaces faith. And I just cannot let that happen.

Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. For I, the Lord your God, hold your right hand; it is I who say to you, "fear not, I am the one who helps you." Isaiah 41: 10, 13

*After reading these verses, I actually saw this blog post. Pretty sure that was no coincidence.