Saturday, August 1, 2015

Project 365, Week 30

Another eventful week around here. We're pretty desperate for boring, run-of-the-mill, mundane, predictable, average...this wasn't it.

July 19
Family Star Wars night. I don't care for it, but everyone else is WAY into it.
 July 20
Aiden escorted me around the block for my morning walk and when Avery woke up she came and found us.

 July 21
R has his driver's license AND a registered, insured car! Two years ago when he came to us at 17 this was an impossible feat by any measure. Its been untold amounts of work, but here we are!
 
July 22
As you know, a routine follow-up with the surgeon landed me back at the hospital. We checked into Urgent Care and there we waited for about five hours in the hallway.

Soon after we got there, I sweet-talked the desk person into getting me in the system so I could order dinner before the kitchen closed. She did it, but was apologetic when it came time for me to order because she didn't have a menu. Slightly embarrassed, I assured her I didn't need one because I had the menu memorized.
The kids got to hang with Auntie Sarah and play with a walking AJ. We thought we'd all be home for dinner but as it turned out, Shaun didn't pick them up until midnight.

July 23
Begrudgingly, I had to admit the view is truly beautiful and the fact that I was sick of it didn't change that. This day was spent doing the drain procedure...
...or swimming with cousins, depending on which state you were in. :)
 July 24
This day began with a beautiful sunrise but quickly deteriorated from there. I developed a C Diff infection and things turned ugly for 48 hours. Now that we can look back, we are so thankful I was in the hospital when it happened. They were able to jump to action and handle it properly.
My superwoman sister took seven kids on a road trip to upstate New York to visit our aunt, uncle and cousin. I got pictures and videos and reports, all telling of a grand time. So glad my kid have those memories.
July 25
This was the view from my third and fourth room...a major commercial construction project, right there in the middle of everything. When I was feeling better, it was completely fascinating to watch them work and to see that crane in operation.
 More NY fun.


Thursday, July 30, 2015

Home...and Thankful

By nature I'm a thankful person. I wake up with or before the sun and breathe in the new mercies and fresh possibilities of the day. My attitude is joyful expectation, whether its housecleaning and cooking on the agenda or a fun family outing.

Cancer has changed that. On the one hand, I am more grateful for even the smallest things...that which I was simply thankful for before, now I am in complete awe of. On the other hand, gratitude is now a choice I make each day. When you are sick or in pain or in a hospital bed or bearing the weight of bad news day after day you don't spring out of bed with a song in your heart. At least I don't.

I have to tell myself This IS the day that the Lord made and I WILL rejoice and be glad in it. And then I start formulating my gratitude list to be referenced when despair tries to set in and hope is hard to come by. Not gonna lie...there have been several days recently when this has seemed like a lot of hard work and the temptation to simply give up has been strong.

BUT, I'm home and its been amazing! After being away for 20 days of this month, everything is a novelty here now that I'm back. In no particular order, here is a list of things I'm loving about being home:


  • tripping over shoes in the mudroom
  • tucking my kids into bed
  • reading stories with Aiden
  • falling asleep next to my husband, sharing the same bed
  • watering my flowers
  • breaking up arguing kids
  • sharing ideas with my husband about his work
  • watching movies with the kids nope...still don't like to do that...but I am, for them
  • sleeping through the night without my vitals being checked
  • changing the toilet paper roll
  • hugging my family...you can't do that through FaceTime, though we tried
  • watching the kids ride their bikes
  • drinking coffee that's drinkable
  • seeing my husband's wide grin every time he sees me...simply because I'm here, breathing
  • having the freedom to step out into the fresh air


A song I often sing to the kids:

Oh be thankful for the good things that you've got
You gotta be thankful for the good things that you've got
The good things that you've got are for many just a dream
So be thankful for the good things that you've got


Monday, July 27, 2015

Doing Battle, Week 44

I started to type that this week was unprecedented, but then I stopped a moment to think if that was accurate. We've had some pretty tough weeks in all of this, so I will just say this one ranks really high.

On Wednesday we went to the city for a follow-up with the surgeon. The appointment was perfectly scheduled so we could get in and out without hitting rush hour on either side.

We got right in with the doctor and she was immediately concerned about the level of pain I was reporting. After doing an exam and talking with us, she opted to order a CT Scan. Thankfully we got to wait out the three hours in the exam room so I could lay on the table instead of stand in the waiting room.

Before I was out from the scan, Shaun was already on the phone with the surgeon, who'd seen the scans and found a collection of fluid. She wanted us to go to the hospital to get admitted so they could put a drain in to deal with the collection. What a blow!

Thursday I got called down for the procedure about 11 AM and that ending up being an all-day thing. I asked them if they'd put me out just a little bit more than last time, because I remember it hurting. They obliged and the process was pain-free. Once I woke up there was pain, but by the next day the pain was greatly diminished; the drain was clearly doing what it was supposed to do.

Good thing, because by Friday I had a whole new set of issues. I don't have much to say about the day because it was mostly a blur, but pretty early in the day I spiked a fever and my blood pressure went crazy low and my heart rate was erratic. They drew blood and took cultures and by evening had me whisked away to an intensive care floor, in isolation. I was in and out that night and I can only describe that experience as walking through "the valley of the shadow of death".

By morning the results had come back that I had a colon infection, an extended-stay hospital borne infection. I was hooked up to all manner of equipment and monitored very closely. Saturday was a long day. While my body was improving, my mind was struggling with the setback.

When I woke up Saturday morning, I had this song in my head that I hadn't heard in years and in my fuzzy state I could only come up with the first couple lines How long O Lord, will you forget me? How long O Lord, will you look the other way?

I knew there was more to the song so eventually I looked it up. It was straight out of the bible and it was just what I needed at the time. (Its a little dramatic if you're not going through something intense.) I loved the second part of the Psalm, the part I'd forgotten and once I found it I began to sing it over and over. Still I'll sing of your unfailing love. You have been good, you will be good to me.

 

Sunday I woke up feeling like a different person and we started unhooking some things. They also downgraded my status so I switched floors, back down to the 15th floor where I was on Hospital Stay #1. (Interesting fact: this was my third different floor and fourth room for Hospital Stay #2. The rooms have been private because I am in isolation. The answer to was it worth it is no. It would, in fact, be better to be sharing a room with benadryl lady, partying at 2 o'clock in the morning. :)

Today is Monday and I again woke feeling better still. Doctors and nurses who were involved have all exclaimed how much better I look. I'm being treated with antibiotics and the drain is working and also the wound vac. I'm so grateful to be on this side of this past week and my doctors sound very positive about me going home tomorrow.

Twenty days in the hospital in July have taken a toll on our family so we are all anxious for me to be H-O-M-E, and for good this time!

Especially this week I've been so grateful for the many of you who have prayed and trusted for us. He has been good, he WILL be good.




Sunday, July 26, 2015

Project 365, Week 29

So...do you want the good news or the bad news first? Shaun asks me that often and I almost invariably choose the bad news first. Get it over with so the discussion ends on the good news.

The bad news is I'm back in the hospital. What a week we've had and hopefully I'll be able to share more tomorrow. The good news is I am feeling well enough to be upright in bed and Shaun brought me my required equipment to blog.

This has been a really difficult time in our lives and these pictures can never reflect that but in everyday there is good to be found.

July 12
Pretty sunset.
July 13
This day I was missing my Aiden-guy something fierce.  I was really, really sad to not be able to spend his 6th birthday with him. But Amy and Shaun filled in the gap to make sure he had all his wishes come true. He got his treasure hunt, time with cousins, a Star Wars movie and a bonus trip to CEC...what more could a boy want??
July 14 
Going home day!! This picture was taken after Shaun took out four bags of hospital supplies and does not include the supplies shipped directly to our house. Are you kidding me?!?
July 15
I was ecstatic to have this bright face, and several others join me in bed for the morning. Yay for home!!

July 16
The girls took turns walking with me, nice and slow in front of our house. We had lots of hard and good conversations.
July 17
Darth.
July 18
I was pleasantly surprised how much time I was able to be downstairs on the couch. I usually had some company, too. :)
Shaun's mom took the kids to an annual family reunion. They managed to find a few kids to play with. :)

Tuesday, July 21, 2015

July's 10 on 10

Admittedly, our family is not typical and it can get it a little crazy around here, so its not surprising that sometimes the 10th is a busy/weird/hectic day. One such day that sticks out to me is here. Hopefully this 10th of the month is unique, never to be repeated in any way, shape or form.

2 AM
The day before, I'd gotten a new neighbor, fresh out of surgery. The evening I was out of surgery, I couldn't do much but sleep. This woman apparently didn't get enough anesthesia because she was up barking out orders to her grown daughter and husband....trying to get her things unpacked, nailing her husband down to the minute on how long he would be gone dropping their daughter off, fussing about her morphine drip, and going over and over and over what, exactly, the doctor had said when she'd come to talk. She did NOT stop talking. I mean it. When the nurse helped her brush her teeth in bed, she talked with the toothbrush in her mouth.

Finally, "we" all got settled so I was quite surprised to wake up to commotion at 2 AM. When I checked my phone for the time I saw the alert that it was 10 on 10 day and I thought, why not?

This woman had hired her own personal nurse to be with her exclusively, in addition to her husband and still she monopolized whoever she could on the hospital staff....all with the lights on. The door to the room is on my right, so anyone going to check on her had to pass by me.

5 AM
The lights have not gone off and she has not stopped talking. They've changed sheets because she thought maybe she might be itchy, they've moved furniture, complete with scrapping and banging and the nurses have been in and out attending to her. She's gone over the pros and cons of taking some benadryl for about 30 minutes and I've stifled my take the benadryl!! outcry more than once.
6 AM
The neighbor is sleeping soundly (the benadryl the staff slipped her??) but I've admitted defeat for the night. Terrible room, but SUCH a pretty view.
7 AM
Walking the halls.
8 AM
Breakfast. Eating is a chore, but they do a nice job with the menu and the food service people are delightful.
After breakfast, I went for another walk and caught my nurse in the hallway. "I'm sorry to be that patient, but I canNOT spend another night in that room with that woman."

By the time I got back from my walk, all my stuff had been moved to a different room! I was SO grateful and the view was still pretty nice.

10 AM
My mid-morning nap felt luxurious.
11 AM
Walking the halls. Fourteen times around equals one mile. At a snails pace, I put in miles over the course of the nearly two weeks.
2 PM
The hospital has a lovely rec center for patients and their families. There are crafts and activities and games and puzzles and reading. They also have a steady line up of concerts. I stood through a few songs by this group, who were quite talented.
3 PM
I worked through just one book during my stay but I've been thankful over and over for this perfect Christmas gift from Shaun.
7 PM
Pretty!
8 PM
After fighting through traffic, Shaun finally arrived and I was so happy to see him. We started a movie but I was so exhausted.
And there you have it...a day in the life on the 15th floor of the cancer hospital, post surgery.

During my stay I had five different roommates and only asked to be switched once. My Fellow declared the whole hospital roommate thing to be "inhumane" and my cousin, who has seen her fair share of roommates while working through to her PhD, pointed out that its a good thing I never lived in a college dorm. True dat!!

Monday, July 20, 2015

Doing Battle, Week 43

After 13 days in the hospital in New York City, I came home last Tuesday evening. The surgeon had set our hospital stay expectations at the average of 5-7 days and we went ahead and knocked a day off since I'm young and healthy and had been faithfully working out to make sure my body was strong and ready to recover. So in our heads, we were going to be there for 4 days. Never, not in a million years could we have anticipated 13 days! Its ALL just kind of crazy.

Everyday it was well...maybe tomorrow. But when I woke up on Tuesday morning everything felt different and I really sensed that it was going to be the day. As time started to slip away we weren't sure we'd get the necessary authorizations in time, but finally in the early evening we were cleared to go!

The kids were still up when we got home around 9 PM so I got to give them hugs before heading off to bed. I was unsure about how I'd do without a hospital bed but its actually been almost a non-issue. Even though we put a safety barrier of pillows between us, it was so good to fall asleep with Shaun next to me.

I have a visiting nurse coming to see me three days a week. On Wednesday she was here for 2.5 hours and on Friday there were two of them here for nearly two hours. So far I've been really happy with my experience and haven't resented them like I thought I might.

The biggest issue they are dealing with is my wound vac. It has to be changed every couple days which entails taking the entire dressing off and applying a brand new one. The process is considerably painful so I try to get my meds timed with their visit.

The vac runs continuously 24/7 and looks very much like my old chemo pump. The chemo pump inflicts sickness, the wound vac inflicts pain. One hundred times out of one hundred, I would choose the wound vac, but its still no fun. Much like Amanda used to call me Pump Girl, Aiden calls me Vacuum Girl. :)

The kids do NOT like the sight of either the pump or the vacuum and they don't like that nurses are coming to the house. They've had lots of questions for me since I've been home and we've had many discussions about the surgery and what it means to us. Its a lot for their little hearts to grapple with and it hurts me to see them have to walk this road.

But God has a beautiful way of redeeming...of using things that were intended for bad, for good. And I know he will do that for us. We've all grown in compassion and empathy and awareness and he will use those things to reach others.

My energy is spent fighting through the pain and renewing my hope and I try to save a little bit so I can hang with the kids for bits and pieces of the day. I also get out and do a couple small walks a day, something the doctors and nurses all really encourage.

The other day on one such walk (pacing back and forth on the flat part of the street in front of my house) I saw a mother across the street. She was holding a swaddled infant, bouncing and pacing and shh-ing. It brought me back to those very early days when we first brought Avery home. The world was small and it revolved around a very few things. Though most of it was blissful, to some degree we were in survival mode, trying to figure out her eating and sleeping habits and learning to discern one cry from another. She was a good sleeper but Shaun and I were still under slept. Those first few weeks were challenging and it felt like we might never get a full night's sleep again, but it was a season.

As I watched that young mother pacing outside, I was reminded that what I am doing now...this too is a season. It is hard and challenging and my world is very small right now, but it IS just for a time.

So, as the unbidden tears fall I am reminded: Weeping may last through the night, but joy comes with the morning. Before I know it, the pain will have subsided, lingering issues will be cleared up and I'll be comfortable in a new normal...we'll be in a new season. Until then, I'll get up and fight another day and give thanks that I've been allowed the gift of another day of living.

Here are just a few pictures from this last week...more on the hospital stay to come...no doubt it will be riveting. ;)

Street clothes! And ready to leave the hospital!
Waiting for Shaun to pull the car up in front of the hospital. I can't describe how strange it was to be out of my bubble, amongst the hustle and bustle of LIFE. People going here and there, seemingly with a purpose. Flabbergasting.
HOME!!!

I know we are on the hearts of so many and you can't know how much it means to be held in your prayers STILL all these months later. May you be blessed for your faithfulness in standing with us.