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June 30, 1978.

Jimmy Carter was president and Grease was #1 at the box office. Chesapeake by James Michener was atop the list of New York Times bestsellers and “Shadow Dancing” by Andy Gibb was probably playing on the radio. Fans of the San Francisco Giants watched Willie McCovey become the 12th player in Major League Baseball history to hit 500 home runs and in Ann Arbor, Michigan a baby girl was born to Ron and Mary Waterloo. Their sixth daughter!

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June 30, 1978. Baby Betsy.

This past Saturday, we celebrated Betsy’s 40th birthday. It was a great opportunity to gather together with many of the people that love her the most. People have mixed feelings about turning forty. I know, I do! This October, I will…cease to be in my 30s (see, I can’t even say it!) and the pendulum of emotions swings back and forth on a daily basis. On the plus side, I still have my hair. But it has become a losing battle trying to pluck all of the grey out of my disheveled mop. I can afford to buy the really nice soccer shoes I used to dream about but often I can barely walk the day after I play in them.

I could go on.

For Betsy, turning forty feels different. When Betsy was born in 1978, the average life expectancy for someone diagnosed with cystic fibrosis was around twenty years. To have made it to forty and to be thriving is an unqualified victory. If Betsy had any grey hair (she doesn’t), it would be a badge of honor. Betsy has been through a lot in her forty years. There have been more than a few health crises along the way. Life now looks a lot different than it did twenty years ago but Betsy has not given in to discouragement. Betsy’s day-to-day existence is not without its difficulties but it is mostly full of joy and laughter and hope.

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1998. Bae (I think that’s what the kids are saying these days) home from college.

And we are hopeful! Betsy is feeling as good if not better than she has at many points in the last ten years. She is still chasing after our six and a half year old son, Lucas. Betsy is a great mom – always at his soccer games and school events. Lucas adores her! She has resumed a little running after some breathing and back difficulties forced her to take an unwanted hiatus. Her time for the mile isn’t quite what it was when she was tearing up the Mackinac Island Eight Mile Run back in college but she is running! She is still operating a successful tutoring business and making a difference in the lives of her students. She even manages to still have the time (and patience!) to help me find all of the things that I misplace.

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Betsy and her favorite boy (yes, I’ve been displaced 😉 )

There are a lot of exciting medical advancements too. The Cystic Fibrosis Foundation is constantly pushing the boundaries for new treatments and medications. We participated in the Great Strides fundraising campaign on a rainy Saturday this past spring. Our team amassed over $5000 in donations and nationwide nearly $30 million was raised, all of which goes towards funding cystic fibrosis research. Betsy’s pulmonary specialist is hopeful that maybe even within the next two years, there will be a new medication targeting the underlying cause of cystic fibrosis for people with Betsy’s particular gene mutations. A company called Planetary Biosciences has been working on new dietary supplements that have made a huge difference for Betsy and others. We feel optimistic!

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Team #Breathe4Betsy

To see Betsy at age forty is a testament to God’s faithfulness. It’s a testament to Betsy’s determination and perseverance. And it’s a testament to the love and support that we have received from our family and friends. Psalm 139 says “You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.” We are thankful for each one of those days! We don’t know how many there will be (none of us do!) but I know Betsy will live them to the fullest, surrounded by love.

Just like Saturday. Happy Birthday, Betsy!

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June 30, 2018. Betsy & her sisters.

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An Update

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Although it’s only been a three weeks, it seems like a lifetime ago that I had my line placed and started my IV antibiotic. Time has been crawling along as I am waiting to be free from this disruption and back to usual life. I’d say things have gone as well as possible. It’s certainly not fun. I’ve been forced to follow an infusion schedule which interrupts my sleep and my plans. The medication itself contributes to a tired feeling and gives me restless nights and bad dreams. I’m only supposed to lift a maximum of five pounds with my right arm which majorly cramps my style. The infected congestion has been very stubborn about leaving my lungs so I’ve had to do unpleasant things in an effort to clear it which has made my back and head unhappy. We had to miss a planned vacation due to the timing of my treatments.

But there have been many blessings as well. My sister came and stayed for eight days! I never get that kind of time with my sisters. Jaime has been able to take some time off this week for a little “staycation.” Having him around has been a treat for both Lucas and I and has allowed me the flexibility to get extra rest. I’ve been going back to bed every morning after my first infusion. Having the ability to do that has made a giant difference in how much strength I’ve had through this ordeal, even if my days haven’t started until 10:30am. And thankfully, my lungs are feeling much better than they did at the start of all this. I didn’t even realize how poorly I’d been breathing until I started breathing better. What a relief!

The better breathing brought with it a rush of adrenaline–the kind of adrenaline that makes me want to do 100 projects.  Jaime has been helping me keep those impulses under control. Last weekend was the first weekend without soccer for Jaime, and being the first-rate husband he is, rather than planning a relaxing weekend for himself, he decided to help me tackle a few yard projects I’ve been dying to do. These are things I knew I couldn’t attempt on my own with a PICC in my arm, but with Jaime’s help and supervision we got a ton of work done.  He only scolded me a few times for lifting things he thought were too heavy or being a little too crazy. We had a few conversations that went something like this:

Jaime: How did those wood chips get spread? Those bags are heavy! Plus you shouldn’t be breathing that stuff in!

Betsy: Well, I didn’t really lift it, I sort of tipped it. And I wore a mask.

Jaime: …

***

Jaime: How did those rocks get over there? They definitely weigh more than five pounds!

Betsy: I have two arms, remember?

Jaime: …

***

Jaime: Don’t you think you should take a break?

Betsy: But it’s really nice out and yard work makes me happy. It’s therapeutic!

Jaime: …

***

Jaime: I have to run an errand.  While I’m gone DO NOT finish this project by yourself!

Betsy: …

***

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This is what we started with…a weedy mess.

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Goodbye weeds, hello wood chips.

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Lucas was a big help…

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Except for when he was chasing butterflies :).

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It turned out really nicely!

Gardening and yard work really are therapeutic for me. I have always loved to be outside. I enjoy growing flowers and veggies.  Being in nature invigorates me and gives me peace–both things I needed during these weeks!

My flowers…

 

 

And vegetables.

I’ve been spending time almost every day exercising on the treadmill or outside as well and have worked up to walking two miles in 27.5 minutes. Lower back pain has made running impossible for me since the fall. It’s frustrating not to be able to jog but my doctor assures me that walking this fast will be just as beneficial. I’ve been able to continue my 10,000 daily steps as well.

I also had my 39th birthday last week! It’s crazy to think that was my last birthday in my 30s. Having cystic fibrosis gives me a different perspective on age, though. I’m so grateful to have made it this far and I’m hoping for many more years. The current predicted median survival age for CF patients is around 40 years of age.  I don’t exactly love all the new lines on my face or the fact that I’m getting more forgetful or that I spend a few hours each day with an ice pack on my back.  However I know that aging is a blessing and I don’t take it for granted.

My birthday was a lot of fun! My favorite gift was a card that Lucas picked out and personalized for me. Never mind the words, he thought it was the most beautiful card in the store and wanted me to have it. We also had a nice dinner out and got rained on at a soccer game which was a lot of fun!

Tomorrow morning is my last infusion and the nurses will come out on Wednesday for my final blood draw and to remove my line. Then it’s sweet freedom for me! I’ll see the doctor the following week to check my progress. I’m hoping and praying that this round of IVs will have done the trick and I’ll be able to find stability again.

A Stray Gray

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A little rainbow of hair color.

A little rainbow of hair color.

Well, it’s official. I found my first gray hair. I wasn’t looking for it, but something shiny caught my eye in the bathroom mirror the other day, and sure enough, there it was.

I know plenty of people get gray hair before age 36.  I thought for sure that after the first year of Lucas’s life I’d be completely gray. But every now and then I’d check and there wouldn’t be any there.

I have seen that gray hair is upsetting to many people. (Somebody in this household started getting them several years ago but no one would know because that somebody yanks them all out.)  Not so for me.  Perhaps it’s because the gray hair isn’t that noticeable. It blends in with my hair color. My hair is some ambiguous shade of blond.  My stylist once called it honey blond. A family member once called it dirty dishwater blond (uh, thanks for that lovely description).  Whatever it is, the gray hides in there pretty nicely.

The truth of the matter is, I’m thankful to be getting older! I just read a publication on the Cystic Fibrosis Foundation website analyzing the patient registry data from 2013.  According to their document, the median age for survival is now 40.7 years old for CF patients. That is up from 33.4 years old in 2003.  When my sister Sheri was diagnosed in 1970, her life expectancy was age 12.  What wonderful gains!

As I’ve mentioned before, there is a lot of exciting research going on which addresses the basic defects of the cystic fibrosis gene. Patients with certain mutations are already benefitting hugely from new therapies and more research is in the works for the other CF mutations.  I hope when the patient registry data is analyzed in 10 years, that even more spectacular gains will have been made.

So bring on the gray hair!  I’ll wear it proudly.