Keeping Hope Alive

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As Jaime recently mentioned, our summer has been great overall! He’s a summer enthusiast, I’m a summer enthusiast, and Lucas has followed in our footsteps to adopt summer as his favorite season as well. We’ve enjoyed days at the pool, time in our garden, park trips, games, lots of soccer, visits with family, art projects and bike rides. If you ask Lucas, though, he’ll tell you that his favorite part of summer is sleeping in as long as he wants. I didn’t realize those attitudes started at the young age of five but I’d have to agree, sleeping in is the best!

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A pool date and ice cream with cousins! Well, ice cream for the cousins and a banana for Lucas.

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Playing soccer in the sprinkler.

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Perler bead art project meets Lucas’s love of deer signs!

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Scrambled States game with more cousins!

Jaime also reported that I had been back to the doctor after finishing my round of IVs and was relieved to see that my lung function had come back up to 38%. When I first began the IVs I wasn’t sure what to expect. When I was on them two years ago I went from feeling a little sick to feeling horrible within the first week. This time, however, I felt much stronger and more stable throughout. Relief flooded in when I felt my breathing ease and I knew I was headed back up towards that 38%. Then I started to hope for more. I thought maybe I could surge up into the 40s again which would give me a little more cushion in case my lung function settled. During antibiotic treatments, my lungs are healthier than usual due to reduced congestion levels and less inflammation. It’s not uncommon for my lung function to drop a few points after I’m off the medications, once my chronic levels of bacteria return with their accompanying symptoms.

I made slow and steady progress in the first two weeks of my IVs, but into the third I felt myself plateau. It’s okay, I assured myself, at least you’re back to baseline.  I remember telling my sister that I almost wished I hadn’t hoped for the 40s because it looked like it wasn’t going to happen. It’s tiring being a hopeful person sometimes. Allowing yourself to hope means opening to the door to disappointment. Hopes that aren’t realized lead either to despair or require me to readjust my expectations.

I decided to readjusting my expectations was the way to go. Having done so, I was relieved, even excited to blow the 38%. The rest of the appointment went well too–my blood oxygen saturation, blood pressure, temperature and pulse were all normal. My lungs sounded clear and my heart sounded healthy.  The only thing that gave me pause was my doctor’s confession that he would feel more comfortable once I strung together six months of stability and we saw that the 38% was sticking.

I wanted to feel joy about the 38% and satisfaction for how hard I worked to see that number again, and I did, at least for a time. But after a few days, I began to feel the weight of his comment. I know where he’s coming from. What happened to me–a sudden and not-easily-explained eight point drop in lung function is not a good thing. He has treated hundreds of CF patients over the course of his career.  He certainly knows that lung function can slip down after a course of treatment. He knows from experience that as baseline lung function drops, patients are more likely to have frequent infections and health becomes more difficult to maintain. He’s a compassionate and caring man but he never sugar coats the truth.

And so a few days after the appointment I felt myself sliding into a place of grief. I felt sad that somehow I have gotten to this place of 38%.  I grieved the fact that I was even temporarily pleased with it. Wasn’t it just yesterday I was struggling because I had dipped into the high 40s? And not so long before that I was stuck in the upper 50s, straining with every fiber of my being to get back into the 60s? The honest truth is, I am sick and tired of readjusting my expectations.

With these unhappy thoughts coursing through my mind, I entered the adjustment phase–the span of time that my CF symptoms spike up as my body gets used to life without the help of antibiotics.  This means hours of coughing each morning and again in the evening, back pain, headaches, and poor nights of sleep. It’s about as enjoyable as it sounds. I began to feel certain that I would work and strive and do everything in my power to maintain that 38% and that it wouldn’t be enough, and my lung function would slip down to a new, lower normal. Sometimes it’s hard to hold onto hope when you’re so frequently disappointed, and feeling awful doesn’t help either.

Alexander Solzhenitsyn, who spent years in a Soviet work camp (and therefore knew a lot about despair) said, “All that the downtrodden can do is go on hoping. After every disappointment they must find fresh reason for hope.” Why is hope so important? We know from medical studies that hope itself has a healing power. Hope causes the placebo effect–where patients show improvements just because they believe they are taking a medication that will help them. Hope is such a strong influence that many drug studies are done double-blind so that the patients aren’t influenced by the unconsciously communicated hope of the researcher. There are studies that show that patients who have an attitude of hope experience much better outcomes than patients who feel defeated or depressed, and true hopelessness can even result in death.

Hope is an essential part of a healthy soul. When I’m hopeful I believe that there are good things ahead and that my life is worth fighting for.  It keeps me from giving up. I do get tired of readjusting my expectations. I weather plenty of disappointments in my life with cystic fibrosis. It’s hard that with a progressive disease, what I’m hoping for feels like “less” over time. Just two years ago I was hoping for 50% lung function. Now I’m hoping for 40%. Or even 38%. The numbers are less, but what is behind them is really the same. I want the health and strength to live a full and meaningful life.

The “small” hopes–hopes to recover from illness, hopes for a higher lung function, hopes for a better day tomorrow–they are important. If I didn’t wish for those things, if I didn’t think they were possible, I wouldn’t fight nearly so hard for them.  Sometimes they lead to disappointment. But better to hope and be disappointed than to live in darkness and despair.

I have other hopes too, ones that don’t require any adjusted expectations. I have the hope that God will transform and redeem my pain and bring wonderful good out of it–for me and for others. I believe that the ugliness and pain of this disease is only temporary but that the good God brings from it will be eternal. I don’t know all the ways God has redeemed my suffering but I have witnessed some things. I have seen my faith become stronger and deeper. I have been drawn and into a closer relationship with God and with others because of my dependency. I have struggled but I have also experienced victories. I have been knocked down but I have also overcome. The joys would not be so sweet without the hurts nor the victories so gratifying without the struggles. I know the eternal glories that await me when this life is through will far outweigh any loss I have sustained. I know God is using this disease for my good. I have built my life on that hope.

And my desire for a full and meaningful life? That can happen at 100% lung function, it can happen at 50%, and it can happen at 30%. It may look different at each step of the way and it may involve adjustments and disappointments. I may need to find fresh reasons for hope on a regular basis. But until the day that God calls me home to heaven, I know He will help me to truly live.

We wait in hope for the Lord;
    he is our help and our shield.
In him our hearts rejoice,
    for we trust in his holy name.
May your unfailing love be with us, Lord,
    even as we put our hope in you. 

Psalm 33:20-22

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Summer, summer, summertime

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Summer is the best. I know some people are really into skiing and hot chocolate and all that jazz but give me the sunshine any day! It’s been a different sort of summer for us. Betsy’s stint on IV antibiotics was unexpected and required us to change some of our plans, but nevertheless we have had a great summer so far. We’ve spent lots of time outside and in the garden and at the pool. Here are some other things we’ve been up to over the last couple months!

Breathing Easier

Betsy has been PICC line free for almost two weeks now and has been feeling pretty good overall. She was back to see her pulmonary specialist last Friday and her FEV1 was holding strong at 38 so that was very encouraging! It’s an understatement to say that Betsy has felt liberated. She is not one to take things lying down and she certainly prefers not to be bound by the strict regiments that IV antibiotics require. Since the 4th of July, Betsy has been free to resume her normal life. She goes to bed when she wants (usually after only one or two friendly reminders from yours truly), she wakes up when she wants, she exercises when she wants. Ah, freedom!

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It’s a lot easier to play soccer with your 5 year old son without a PICC line in your arm.

 

Thank You

Even though it’s been a couple of months, I wanted to say a belated thank you to everyone who participated in the Great Strides Walk this year. We are grateful for everyone who walked with Betsy. It’s a small gesture but it’s a very meaningful one. In a lot of ways, Betsy walks the CF path alone and so it is encouraging for her to look up and see that there are people walking along side her. Thanks, too, to everyone who contributed to our fundraising efforts. As a team, we raised over $4000 that will go toward research being done by the Cystic Fibrosis Foundation. This important work is bringing new treatments to CF patients. It’s very encouraging and every dollar brings us closer to finding a cure. Finally, we wanted to thank to our dear friends Ross and Deb who have organized Team #Breathe4Betsy for two years in a row. Coordinating the team is a labor of love and we really appreciate their efforts that have made the last two Great Strides Walks possible.

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Team #Breathe4Betsy 2017

And I Would Walk 500 Miles…

Speaking of walking. Back in January of 2016, Betsy got a Fitbit. Last December she had a streak of 100 straight days of achieving the target of 10,000 steps per day. On July 17, Betsy completed 365 consecutive days of logging a minimum of 10,000 steps. One whole year. That’s not 500 miles. That’s approximately 2200 miles. Crazy weather conditions, being sick, dealing with back issues, a PICC line stuck in her arm – nothing has prevented her from getting out and staying active. Physical activity is so important to her overall health and being physically fit is what allows her to do so much in spite of her compromised lung function. I’m really proud of her. Long live the Fitbit streak!

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July 17, 2016. The last day Betsy didn’t walk 10,000 steps.

Detroit City F.C.

My borderline insane affection for soccer is well documented. In 2012, I started following a 4th division soccer team here in Detroit. Detroit City F.C. may technically have amateur status but you’d never know by going to the games. When I was a kid I would watch games from Europe on TV and dream of having a local team of my own to support. Now I do. The last couple of summers, though, Lucas has gotten on to the bandwagon as well. I took him to a game two summers ago and we barely made it to halftime before he was ready to leave. Fast forward to 2017 and he is almost as obsessed with the team as I am. He knows the players and pretends to be them when we play soccer in the backyard or in the kitchen (yes, we do that). A couple weeks ago we were at a game and decided to hang around for a little while afterwards. Lucas got to meet several of the players. He was over the moon!

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Lucas with some of his favorite Detroit City F.C. players!

Silver Holloware

On July 14, Betsy and I celebrated our 16th wedding anniversary. In case you were wondering, the traditional gift for one’s 16th wedding anniversary is silver holloware. In case you were wondering, holloware is stuff like sugar bowls and tea pots. Having exactly zero need for a silver soup tureen, we decided to skip the gifts. Instead, we got take out and had a picnic at one of our favorite parks. It was a low key evening, but it was fun to reminisce about the last sixteen years and think about the next sixteen (assuming Betsy doesn’t kick me to the curb before that!).

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The day I won the lottery.

Eventually school will resume and leaves will start to change color. But there is still a lot of summer (glorious summer!) left. In a couple weeks, Lucas and I are taking a road trip to see his other favorite soccer team, Manchester United, play in Washington D.C. Lucas’s 6th birthday is coming up at the beginning of August. And we have a long weekend at Lake Michigan penciled in for later that month. I suspect Betsy may be sizing up one or two more projects around the house as well. We are having a huge pine tree removed from our yard and if I’m not mistaken, Betsy will be eyeing that plot to expand her garden. Being married for 16 years gives you a 6th sense for that sort of thing. 😉

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.