Snow Days Adventures

The AWFUL Neulasta did its job. Today my white cell count numbers were through the roof and my lungs seem to be healing! This is me yesterday getting ready on THE coldest day on record to take Stacey to her 7:30 a.m. foot appointment. We made it there and back and doc says she can start trying to put weight on it. We will see how that goes.

But, enough of all the doctory stuff. Yesterday...we made COOKIES! Yes, I was actually in my kitchen with my son making cookies. It was AWESOME! It isn't every day you get to make cookies with your 9-year-old shirtless son on a day he is home from school because of frigid temps outside! I took advantage!

Don't ask me, but he runs around all the time without a shirt. Winter/Spring/Summer or Fall. I often ask him to put a shirt on just because looking at him makes ME cold! We used a great monster cookie recipe you can find on my aunt Jo's blog Jo's Country Junction. It was easy and the results were fantastic (although I realize I didn't snap a picture of the end result). Matthew is in that stage where now he is too tall for his stool he always stands on. I will have to find something else to stand on that isn't so tall. Looks like my "baby" is growing up.

We had everything together and found that the bag of M&M's had been raided which is always a disappointment. I thought I had hid one so no one would know where to raid. I checked the bottom of my lazy Susan and there was the other one. I actually found something that I had hid! We could continue with the recipe!

I am not a baker. I am actually not really a kitchen person. I say that although when I am in the middle of preparing a great meal or baking a few loaves of banana bread or cookies, I am enjoying myself. Let's just say the first thing I DON'T think of when I wake up in the morning is "hmmm...what should I make in the kitchen today?" I have been blessed with a huge wonderful kitchen and I don't take that for granted.

Matthew's number one question whenever we are baking together is "can I lick that? can I like the bowl?" He loves peanut butter on the rubber scrapper and gets sad when I try my best to leave as much of the peanut butter in the mixer before giving it to him to lick off.

We have now had a total of six full snow days in the last two weeks. I am still okay with that. I know that we will have to make days up but I am at heart a hibernator and so this is dreamy to have my people all around me and to actually be feeling pretty good. I haven't picked up a bug this time around so far. I feel better than I have since chemo started back in December. I am thankful!

Snowy Days and Mondays

I didn't mean to wait so long with such heavy blog on Friday but that is the way the weekend went. I really had nothing to report. Lots of bone pain and mostly resting in my bed. Before I started writing this I thought I would have a much better report since I woke up this morning without any bone pain at all. I was up a couple of hours while the kids got ready for school with their two hour delay.

Debating what I would do today I decided to do some patching on my quilt. But before that, I got the mail and read a couple of cards and took a pen to my new Nancy's Notions catalog that came today. Who else does that...goes through and circles all of the things that would be cool to have? Yeah, it is fun to see what is out there to make a job in the sewing room easier or more fun.

I have mentioned  that I am working on a quilt and I think I even shared my plan to pin the rows together and then to keep them from getting mixed up taking one row down to my sewing machine at a time to force myself to get my steps in for the day. I stared down at the rows and I had done about half of them on Saturday until I had made my step goal and then stopped for the day.

Maybe if I do the rest of the rows before I settle into my bed to patch my quilt/blanket I would feel accomplished! So, I did the six rows left and have very few steps to go before at 1:24 in the afternoon, I am almost done. Exercise for me these days are not huge goals, but I am doing pretty good at reaching the small ones.

So there they are...folded over so they don't take up all of my bedroom floor but there's proof that I got them done. As I picked up my computer to start blogging, everything from my waist down started SCREAMING. It took about 10 minutes for me to get up and get out to the kitchen for Tylenol. Last night I took three and it settled the bone pain down so that it was manageable. I am waiting for it to kick in now using this post to distract my brain.

Some of my tools and left overs to patch with.

So, I am excited to work on my quilt/blanket. If you want to know that story about my life blanket, you can read more here. Today, I have gathered my goodies together and will enjoy some time patching. It is something I can do from my bed and I love when the kids ask about this fabric or that fabric.

Here are a couple of spots to focus on today

Friday From the Heart: Heart Stuff

Last week I googled life expectancy for metastasized breast cancer in the liver. 

What starred back at me from my screen was not what I wanted to see. I will be honest. I was feeling down last weekend because of my delayed treatment and thought what would it hurt to actually see what is out there for statistics. Well...that wasn't something that boosted my spirits and not something I would suggest doing when you are getting stir crazy feeling cruddy laying in bed after the 1,367th episode of Monk you have been binge watching and dozing through.

The google search was generic, basic, nowhere did I input what type of cancer it was and whether or not it had gone anywhere else, so I just figured I would quit right there and tell myself this didn't apply to my kind of Her 2+ cancer that can be treated different ways than my non-mutated previous cancer. Doc had told me that she has two patients right now that were doing very well and they have already doubled that google statistic. I wasn't feeling super great mentally but at least I got myself to a place where I was not obsessing on the negative.

I had taken the years that I saw on the screen, and had heard from the doctor and added them to my children's ages. I long for more time than that. Of course I will be taking that to the Keeper of the Stars, the Numberer of my Days, My Creator God and will plead my case. Every.Single.Day.

Yesterday I was under the weight of a ba-zillion un looked at unanswered emails and decided to go through them and see how far I cold get. I have been trying to spend more of the last few days up and about since it isn't great for my lungs to be laying down all day long. I sat at my computer in the kitchen. There had been some test results that the docs office had sent. The computer at my desk is the only one that has my username and password automatically logged in.

I got myself logged in and there were a few tests from the past couple of weeks that I hadn't pulled up and looked at. Two of them were cancer markers in my bloodwork. I looked at the three times since I was diagnosed and saw that there wasn't anything drastic but they had been going up. That didn't sit real well with me. No one has said anything about it in the office so I will just put it on a questions list for next visit. It either doesn't mean anything too serious or they are just waiting for the PET scan to see how things are going.

Then, speaking of scan, there was the result that came back from the CT chest scan I had last week to check for the infection. I saw the pneumonitis diagnosed but also saw that the scan DID go down far enough to catch a glimpse of my liver. "several lesions consistent with metastatic breast cancer". Well, that is exactly what it said in November after the PET scan. I had to stop my obsessing on that and remember that this wasn't specifically a test FOR my liver so there are no measurements, no numbers so I have two weeks to let this new round of chemo do its thing and then we look at the liver.

But what does my mind do with this? Well, process it first I guess, and that is where the not so fun thought are and the clouds move in. I ask myself if this is the best that I can do? I question the journey I am on and talk to God some about whether or not I am in the best office with the best people taking care of me. Then I get to a point where I move from what I don't know to what I DO know:

• My brain had been clearer and my memory better.
• My back spasms have totally gone away when I am laying down.
• There are different kinds of pain in my liver area that make me feel like there indeed is a battle waging there that has to at LEAST equal the battle that my hair is losing. Take THAT cancer!
• If on the PET scan coming up there are lesions that have gotten smaller or little ones that have disappeared by ANY degree it is GOOD news and totally worth it!
• I can rest in knowing I don't know what all these numbers mean. I may be way off in my conclusions - a rocking chair of worry can exhaust you and never get you anywhere!

So there it is...worries, fears all a part of the fight - the fight I GIVE OVER once again this day (as we all should do every day) to the One who can actually bear it on His shoulders and carry it so I don't have to. He wants me to learn to number my days. I don't believe it is for me to know how many days there are left. But instead it is so I wake up in the morning and rejoice for this tomorrow that became today. Its another day to use and fill with following closer to Him and living as the Holy Spirit prompts. Pouring over prayer requests for others and being present - fully present in the lives of my children, loving my husband, checking on my friends and family  members.

If that is my to-do list for these days, I stay busy! I am thankful for today and for every single tomorrow He gives me. Life is STILL SO RICH every.single.day.

"Come unto Me all who labor and are heavy laden and I will give you rest. Take My yoke upon you, and learn of Me for I am meek and lowly in heart. And you will find rest to your souls. For my yoke is easy and my burden light."

Matthew 11:28-30

TREATMENT #3 - Under One Condition

Oh boy have I been selfishly spending most of my time praying for myself in the last 48 hours! Whatever has been going on in my lungs, I wanted a way to keep the treatment schedule. I had been feeling some pain in my liver area and our minds get messed up sometimes making up dumb things based on no facts at all.

So, not knowing what the blood test would show but being VERY hopeful, I went off at 9:30 leaving my "snow day" house and a few chores instructions. Ryan had already blew the snow out of the driveway and the other two boy were out cleaning up the sidewalk and the mailman's path.

Bloodwork still showed elevated white counts but they weren't as high as last week. After my examination showed all of my symptoms were gone I was approved for treatment under one condition. I would have to take Neulasta to help keep my white cells building while my body still fights the pneumonitis. Not my favorite news of the day but it followed the best news of the day so maybe it balanced it out. Hopefully the Claritin will help the bone pain.

We are again moving forward. I like moving forward. It is interesting to find out how much deeper a deep breath can be. I am feeling that I can take a deeper breath when I didn't even know last week that my deep breaths weren't as deep as they could be. I am sad that I won't be able to make the trip to Lincoln, NE this weekend to watch my show choir kids. There are plenty who will video so I am sure I will see them but it still isn't quite the same.

I have been working since Saturday to up my water intake and trying to be up and around more and not always laying in bed. It is nice to feel like I can sit up and move around more. I have a very low step goal at this point but I have also been trying to make that goal. It isn't too hard to do if I have to get out and go somewhere but it does take an effort if I am home all day. But, I have been putting forth the effort. I happen to be able to report today that I have FINALLY reached my water goal intake as you can see.

Obviously I need to keep working on it. It was a great day in the infusion room. I got to do chemo across from a longtime friend Beth Dunkel. Unfortunately, in recent years we have been reunited in the oncology office. I am thankful for good conversation. A little while into treatment another friend Shari came by to hang out and chat. It was nice to just chat. We have school business to take care of tomorrow so it was nice to just laugh and talk today. Beth got done a little before me so she popped over so we could take a picture together. We talked about how we have known each other since I was in third grade! Time sure does fly!!

So, not long after that I was also done and I got my Zolodex shot that I get every month and the Neulasta installed and ready for tomorrow around 6-6:30 p.m. I have been home now for about an hour and a half and I have already caught it on a doorway three times. And we have wide doorways! We will see. In my past experience with Neulasta about Monday the bone pain in my neck and skull starts. Which is weird because they say that the pain usually hits in the larger bones. I have already had pain in my thigh bones and hips with the immunotherapy drugs they have white blood cell boosters too.

Now my job is to spend time each day up and around. Rest when I need to, drink my water and stay away from germs! So I will try my best to do that and hope this round goes better than the last two and that my lung heals. I do have a PET scan planned the week before the fourth treatment to see how my liver is responding and I am looking forward to see how that is looking.

Prayer requests specifically for us:

1. Good health and safety for Dawn and Ryan who are heading to Nebraska for show choir competition this weekend.
2. Tolerating the Neulasta with very little to no bone pain.
3. The chemo attacks that cancer in my liver!
4. No bugs or germs of any kind to attack me when I am down next week.
5. Good news on the PET scan that all this we are doing is moving us in the right direction.
6. Continued healing for Stacey's foot. She is still in pain and PT is trying to help remove the swelling. She is back to the doctor for a check next week.

Thank you all!

Oh taste and see that the Lord is good! Blessed is the man who trusts in Him.

Psalm 34:8

Snowy Weekend = LOVE!!

Well, the blizzard came. I started somewhere in the middle of the movie we put on Friday night. One of the kids snuck over to the window to look out and see if it had started snowing YET?!!! There was a cancelled sleepover for one son and he was starting to think it was all for naught. The first check  not long after the snow started was 1" or so. They all came in and continued watching the movie.

They took the ruler outside after the movie was done and they were able to measure up to 7"! That was a lot of snow in a little bit of time. We brought up the Nintendo 64 for a little Tetras tournament. Really, it was just Zach and I. We played until my eyes got too tired. I can't tell you what time all of the people in my family went to sleep, but there was different video games being played, shows being watched (mainly NCIS since that what most people like to watch in this house.)

On Saturday morning we ate breakfast that David made (the very best kind of breakfast as far as I'm concerned) and then the snow crew went outside and fired up the snow blower. They worked on the driveway and sidewalks along with the mailman's path. They got it all cleared. They spent a lot of time out in the snow playing after the clearing job was done. Dawn was even drawn out by the white stuff and they of course had a fort built before it finally became a little too cold. I had to remind them all to hang it up or it will  be wet and cold the next time they want to go outside.

By afternoon, the switch was brought upstairs so that Zelda could be played. With Monday off too it turned out to be a great weekend to just relax and hang out together with no real place to go and no real places to be. I did some resting but Monday I made my bed and spent most of the day sitting or standing or walking around the house. It was Monday night when I decided to iron on my quilt squares since I was able to finish the pinning and sewing of the squares. I was half way to my total steps on my Fitbit when I decided with every three squares I would stop and make three laps around my ironing board and before I knew it I had made my steps goal.

Not only that, but I have all of the pieces pressed and laid out on the floor. The quilt is going to  be so cute. I am super excited to start sewing the blocks together. And just as long as you are wondering what I have be binge-watching over this last week while I have been resting, it is Monk. It has been years since I had watched and it is a fun little show so I had that on while I was working on the quilt. I also would like to report lest any of you think that I am not exercising my brain and getting a little mushy, I have also finished 2 books this week and advanced about 30 levels on Wordscapes so I am still working regularly on keeping my brain sharp! Saturday was alittle darker for me and I may share some of that on a different day. Still working through that. For now I will go off to treatment tomorrow, thankful if I am able to move on with treatment #3.

Prayer Request for today: TREATMENT #3 TOMORROW!!!

Preparing for a Blizzard

Some people go to the grocery store and stock up when the threat of winter weather comes. I have always been just a little bit different. I stopped at JoAnns yesterday before the Chic fil a drive thru for chicken noodle soup (with a mask on) and purchased denim needles and blue jean thread. I was out of needles and I have three pairs of blue jeans and two pairs of dress pants of David's that need hemming. You really shouldn't be home all weekend without the right needles and thread to do a job like that. But that is just me.

I have also been pinning quilt squares in my bed this week. Still can't show what I have been up to because it doesn't look like much yet but it will! I have been pinning curved pieces together and then when I run out of pins, it takes about 30-40 minutes at the sewing machine to stitch them up since they are pinned well. I got to use my new Gizmo which is the purple thing in the picture below. It has a very sharp blade and when I am chain piecing I can run the threads between the squares over the blade and it quickly snips them apart. Brilliant invention whoever thought of it!

No matter what happens with the weather this weekend, I am happy to know that I will still be able to get things done while my lungs are healing. The pain hasn't been as constant in my back today as it has been the last few so I am hoping that these antibiotics are kicking this mess to the curb! Meanwhile, I am ready for whatever weather we have this weekend!

Pneumonitis

Waiting for Results

Chemo was a no go today. It makes me sad but glad on the other side of it. Something has been going on and it is good to be getting to the bottom of it. I have been tired of feeling sick most of the time and spiking random fevers for reasons that aren't always obvious.

There was blood testing on my port and an auxiliary location to test for any infection that may be in my port. Those will culture for a few days. I got to once again pee in a cup and then it was over to the hospital for a chest CT scan. They wanted to check for any possible blood clots or pneumonia since I have had pain in my top right quadrant in the last few days.

After the CT we were back to the office to have the port de-accessed and hearing the results. NO blood clots which was good news but there was pneumonitis in my right lung. So, treatment with a new antibiotic that is stronger and then another attempt at round three for next Wednesday.

Yummy Very Late Lunch!

Dessert!

Mom had come with me today and by 3:30 we were out of the office and starving! We ate a wonderful meal at Olive Garden. It was a perfect ending of long day. We stopped at a couple of places while we waited for the prescription to be done at the drug store. Home again, home again, jiggity jig!

Game Night

Zachary got a new game for Christmas and the winter weather advisory and the cancelling of all of the school activities for the evening made it a great night to crack it open. At first I have to say that we weren't sure we were going to like "Dos". We know how to play "Uno" and love that but Dos is a bit different and quite a lot to keep track of as we read through the instructions.

We finally decided to play a couple of rounds and see if we could get the hang of it. It didn't take long at all and I think it will be a game we will play again. So, if we were to say whether or not we recommend it, we would say yes. Six of us played while Dawn joined us after her shower and hung out while we played.

We played three rounds and a couple in the group got a little discouraged after Ryan won two of the rounds. I reminded everyone that Ryan is usually unlucky and if we played another few rounds his winning streak would probably end but we decided to try a different game we hadn't played in awhile.

A Dos Selfie!

I found "Pass the Pigs" on the game shelf and I realized that I think we may have showed it to the triplets when the were little but didn't really get it. I forgot how much laughing is involved in the game Pass the Pigs. I am sure that it will be played again soon. No one believed me when I brought it out and told them how fun it was. Now they do!

Perfecting the pig rolling technique

Wow! David gets a double razorback!

The game is played with two pigs. Each has a black spot on one side, no spot on the other. Depending on how they land, you get a certain number of points. There are ten rolls in each game and whoever has the most points at the end wins. We played two rounds of that before we had a family meeting. Zach and I shared the last two places, him coming in last the first round and I lost the last round. Unlucky David won both rounds so go figure!

Then we also recorded this fun video of Stacey's turtle impersonation. 

I think by far this is the best way to spend the night before treatment. Number three is tomorrow. Two days fever free since Sunday so I am pretty hopeful that all is good to go. Tonight I am thankful for laughter and prayers!

"...a time to laugh..." Ecclesiastes 3:4

Back in Bed

We have had a good week. I wanted to write a Friday from the Heart this week but it didn't happen. Lots of things done and I felt pretty good most of the week. About Thursday my nose was a little drippy (welcome to chemo world). It went on for a couple of days. Then it was time to start nasal rinses to keep my airway open. Well, I came home from church which was so good for me today and took a nap. I didn't sleep very well because I felt cold and couldn't get warm.

When I woke up I had a fever. UGH!!!! Today was my last day on the antibiotic when I had a terrible sore throat last week. So, I must have gotten some kind of bug. I had been out and about most of Friday and all day yesterday.

They say to call the on call doctor if it is higher than 100.5 but I also know that they want to keep me from the hospital as much as they can. When I call the on call doctor they will tell me to go to the ER. Then, I get admitted for about three days while they try to determine what is causing the infection.

The last few times when I have had a higher fever I took ibuprofen to get it down below 100.5. Then sleep comfortably in my own bed and call the office in the morning. I have decided to do the same here. The ER takes about and hour to get into a room and then another couple hours till they get you to a room. It is miserable.

I don't know what this is all about but I will call in the morning and they will determine things they can do. Wednesday is supposed to be my next treatment and so my prayer tonight is so that I can get well enough to do treatment on Wednesday, or at least by the end of the week.

 As you can see, I have been a little stir crazy today. My plan was to come home from church, take a nap and then work on a quilt. I am doing a quilt that I am very excited about. I will definitely share once it is done. I hope that I will get a chance to keep at it.

I have had some discomfort daily this week in my liver area, front and back. I am hoping that there is a major battle being fought there! My hair hasn't completely fallen out and I haven't shaved it. It is nice in the shower that what is left is seeming to stay a little tighter and when my shower is over there usually is very little in in the drain area.

Here are specific prayer requests for us this week:

1. Breaking of this fever.
2. Wednesday's treatment can go on as planned.
3. Patience for me as I am stuck in bed again.
4. Patience for Stacey as she waits for some change in her foot.
5. Healing of Stacey's foot ligament and hope for her.
6. Dawn isn't feeling well this week. Prayers for healing for her.
7. Pray that we are winning that battle that is taking place in my liver!!

In God, whose word I praise, in God I trust; I shall not be afraid. What can flesh do to me?

Psalm 56:4

Meanwhile, Stacey

So, Stacey's leg and foot problem still linger much longer than she would have liked. Originally we were going to be having compartment syndrome testing for the six remaining compartments in her legs that were not operated on two years ago. It was scheduled for January 3rd.

The week before break however she injured the top of her left foot. It remained swollen and very painful to walk on. We made an appointment with the Foot and Ankle clinic last week to see if we could get to the bottom of things.

Doctor there took three pictures of her foot. One of the films looked like there could be a fracture in one of the bones. The other two films didn't show that though, so he wanted us to get an MRI. So that is what we did the last day of Christmas break.

The MRI showed that there is no fracture! YAY! But her Lisfranc ligament is injured. Doctor says it isn't torn which is good because it could heal on its own. Sometimes it doesn't though so we will be watching it close.

She is going back to see the foot doctor on Wednesday to go over in more detail the MRI pictures and hear how we will proceed. She hasn't felt any relief from the pain and is hating being on crutches and in the boot. She is not my most patient one. But no one wants to sit out of their favorite sport. We will see what the doc says and hopefully he will have some kind of plan. Stacey said, "well at least I injured it doing my sport and not some other dumb reason."

Hopefully...Stacey will ask HIM all of the questions she has been bugging me about!

Show Choir Begins

A few pictures were taken when I gave my phone to Stacey to video the first show choir performance of the season while they waited in between the jazz bands and the show choirs on Thursday night.

When my phone comes back there are always crazy little brother pictures and it makes me smile. It was a great first concert. Dawn played vibraphone in the Jazz 2 band, Ryan plays piano in the Jazz 1 band, Dawn and Ryan both sing/dance in the prep show choir Revelation and Ryan plays synth in the New Creation show band.

I love how they are doing what they love to do. I love that sometimes the high school gym hosts home basketball games and sometimes it hosts show choir competitions and jazz band concerts. And I love that this year, with David's new job, much of the time the rest of us are in the stands cheering them on.

There are things that really stink right now but we have had a lot more opportunities to be together and support each other. Even though I have had bad days lately, there are still so many great moments with the people I love. 













Before all of this cancer stuff came back to the surface I spent much time last fall just listening to my house and the people in it. There are a lot of sweet moments if you just listen for them. Thankfully, with a lot more resting can come a lot more listening.


Well, we got to hear some good music on Thursday. Then on Saturday they went to Des Moines and made it into finals. I missed it because I was sick, but the kids did great and I have some great parent friends who always take WAY better pictures than I can ever get! I am sure I will be flooding the internet with video and pictures of these kids.


As hard as they work to achieve the goals they make for themselves, I am so glad that I get to be in the audience as they share their talents.

So, if yesterday I felt sorry for myself (and believe you me, I have been feeling sorry for myself all week!), today I feel blessed. Blessed and oh so very thankful that I get to be here and I get to watch sometimes right there and sometimes from afar with just text updates and Facebook snippets. Life really is good, even on the bad days.

Rough But "Incredible" Start to the New Year

Well, it looks like there will be no "routine" to these chemo rounds. I was down in bed most of the week with extreme fatigue and then end up with a fever and now on antibiotics. I am not sure where the germs came from because I was quarantined in my bedroom for the time I was most vulnerable. Yesterday I woke up to a 101.4 fever which is almost a whole degree higher than I am supposed to be without going in. So I called.

Thankfully they didn't need me to come in, and told me they had called in an antibiotic. So, I waited til an early lunch time and made a trip to CVS for the meds, Chic fil a for a large bowl of chicken noodle soup (THE ABSOLUTE BEST), and Scooters for a large hot tea. I got back home and comfortable and rested all afternoon. The only symptom I had was a TERRIBLE sore throat. I could hardly swallow it hurt so bad.

So today? Well, swallowing still hurts a little and I have had two doses of the antibiotic. I slept well thanks to Lorazapam and did feel better this morning. I have been up a bit today and rested when I felt like it. I do have to say it stinks. We had planned for Stacey, Matt, Zach and I to drive to Des Moines today to watch Ryan and Dawn's first show choir competition. Instead I got to see clips from parents on Facebook. I am thankful for Facebook.

I tried to take a great picture of me but it really got depressing to me. My skin is pale and grey and I just look sick. (okay, I guess I am sick). It just stinks to look at the face in the mirror sometimes. So, I opted to share a picture of the Incredibles 2 because this afternoon I had a couple of visitors in my room to watch with me. (not quite the show choir watching we had hoped for but good fun together time).

"But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint."

 Isaiah 40:31