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Thankful Thoughts

It’s November 8, and I have been less than committed to my “November Blessings” this year. Since I haven’t posted in a week or so, I figured it was time to update what I’m thankful for today.

Today, I am thankful for the right to vote, which I exercised on Tuesday. I realize how lucky we are to live in a country where we can vote (regardless of gender, race, or religion), our voice is heard, and we are given the opportunity to vote in new candidates over time. I believe I am so blessed to live in this country.

I am also thankful for access to great healthcare. I have had a variety of doctor appointments in the last two months or so, and I am so blessed that I have the financial ability to be at one of the best hospitals! My CF care team is phenomenal, and all of my other doctors are great too. I can’t even begin to describe how different my life would be if it wasn’t for this standard of health care.  

And finally today, I am thankful for my insulin pump. I recently decided to go on the pump so that I don’t have to inject myself 5+ times in a day, and so that I would have better control over my sugars. This transition really deserves its own post, and I will try to do that somewhat soon. I’ve been on it for over a month now, and I love it. My sugars are in GREAT control (80s in the morning, under 120 two hours after eating..wonderful numbers), and I only have to inject myself once every three days to change my site. It has made my life a lot easier, and for the first time (in a long time) I forget once in a while that I have diabetes. And that, my friends, is definitely something to be thankful for.

I have another CF appointment today. Last time, my lung function had dropped from 85 to 78. I never see numbers that low, and it terrified me. Hopefully this time they are back up. My respiratory therapist, who is amazing, will be there this time. She wasn’t at the clinic last appointment, and my doctors said that they will wait to see what my numbers are when she is back. Believe it or not, the person administering the test can make a huge difference in the numbers! SO, I’m hoping my FEV1 will be at least 83!

Treatment Compliance

When I was teenager, I was never compliant with my treatments. I used to do them sporadically at best. It was hard to understand what purpose they served because I didn’t cough often, I felt really well nearly all the time, and I had really good lung function. The teenage mentality had hit me, and I couldn’t understand the concept of doing something now that would help me later. 

Sadly, I do believe some of the neglect to do my treatments was due to fear of the disease. I feared other people finding out about it, I feared what would happen if/when I got sick, and I feared dying from it more than anything. It took me a long time to get over these fears, and I struggled to be “normal” for as long as possible. Unfortunately, these fears and lack of compliance with treatments have taken their toll, and my lung function is nowhere near the 100+ that it used to be. It truly saddens me to think that I couldn’t be responsible enough to take care of my body at a younger age.

Fast forward to 2012. 

It’s 4 AM, and I am sitting here doing my treatment. In fact, I can’t tell you the last time I missed a treatment because it’s been years. I don’t care if I’m super busy, I don’t care if other people are around, and I certainly don’t care if I’m too tired to do it (a common excuse I used to give and still sometimes try to pull off until my husband gives me the “are you kidding me?” look). I do my treatments. Every day. EVEN when it’s not easy. 

Today was a prime example of not easy. We were lazy this morning and I didn’t get my first treatment done until 2 PM, and I needed to do chores/get ready to leave for a surprise baby shower for my sister-in-law so I put off boiling my nebulizers to sterilize them. I should note here that I have to boil my nebs every single day. Insurance won’t let me have more than 4 nebulizers, and I’ve cultured bugs in my lungs from tap water so the healthiest thing for me is to do daily boiling. It’s a little inconvenient at times, but it’s not too big of a deal. 

Well, I got dressed and did my chores, and I left the house without boiling my nebs (shame on me). Because it was an awesome party, and we don’t get to see David’s family enough, we didn’t get home until 10 PM. That meant I was sterilizing nebs at 10:15 PM. This meant that I was looking at 12:15 before I could do my treatment because the nebulizers need time to air dry. Sometimes, there are really hard times when I just want to go to bed rather than do my treatment. I force myself to remember that tiredness is not worth the way I will feel in the morning if I skip a treatment, but I also compromise. I usually take a nap when late sterilization happens. Today was one of those compromise days.

So I went to bed. And slept. And slept. And slept. Sometimes, compliance is more than just a one person job as I need a kick in the behind once in awhile, and thankfully I have a wonderful husband who does just that. He says he does it because he wants to see me around for quite some time, but sometimes I think he just enjoys seeing me extremely groggy and confused from being in a deep sleep 😉 . Today was one of those times where, if it wasn’t for my other half, I wouldn’t have woken up and my compliance streak would have been broken. But he woke me, and I grumbled and got out of bed to start my treatment at 4 AM. And, in my opinion, anyone who wakes up and gets out of a warm comfy bed when it is 32 degrees outside, stumbles downstairs, and does a treatment this late in the night just so she doesn’t skip a treatment, is 100% committed to compliance. 

I’ve decided I want to be here a long time, God willing, but if I don’t make compliance and exercise my priorities, I won’t have that luxury. So, while getting up at 4 AM is not fun, it’s one of the million things I’m willing to do to try and keep myself healthy. AND my lungs will thank me in for it in the morning.

The Perfect Reading Weather

If you’re a reader, you will understand this post perfectly. 

Yesterday evening was the perfect reading weather. To be honest, I have four to eight different “perfect reading weather” situations which correlate with the different seasons, but it’s been awhile since this one has visited me. 

Around three o’clock yesterday the air turned extremely cool, and by the time I went to pick up David, I was sorry I hadn’t grabbed a sweater. As the sun continued to set, the air continued to turn cooler and the wind picked up. I was secretly hoping it was coming and sure enough, by 8 o’clock, I had my perfect reading weather.

It was extremely windy and the rain was slightly tapping against the windows. The air was so crisp that I debated over opening a window for the evening, but I couldn’t resist the lure of the fresh air filling the house. So, I opened the window just slightly, lit my mulled cider candle, and I grabbed a big, warm, and fuzzy blanket from the closet. 

As the rain steadily ran down the windows, I cuddled that blanket up to my shoulders and I read for a good amount of time. My current book is Something Wicked This Way Comes by Ray Bradbury, which fit the rainy setting and helped to chill me even more.  It couldn’t have been more perfect; a scary book, autumn chilled air, a warm blanket, the drizzling rain, and the scent of a cider candle filling the house made for the best reading weather I’ve had in a long time. 

In case you were wondering, my other favorite fall reading weather is when it is beautifully sunny outside and the colors of the trees are painting the sky with vivid colors. That weather can’t help but make you smile. 

What about you? If you’re a reader, what is the perfect reading situation/environment for you?

Thank Goodness It’s Thursday!

I am so glad that this week is going by quickly. I am desperate for the weekend right now. I want to cuddle with my husband in bed on Saturday morning while the sun streams through the window. The chill of the autumn air making us pull the covers around our chins. The smell of coffee brewing downstairs. The peaceful look on our dogs face as she catches the last few minutes of sleep. 

Without a doubt, this is my favorite time of the week. I look forward to it each Saturday morning, and it changes slightly throughout the year depending on the weather outside. I think I’ve been craving these times increasingly more because of the beginning of the school year. With David coming home and working until 11 PM on school work, we don’t have as much time together as I’d prefer. It makes me long for the weekends.

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My other Saturday favorite – Coffee in our huge mugs from Disney

While I wait for Saturday, however, I have plenty to do. I have a house which desperately needs cleaning. It astounds me how the house can be clean one night and a disaster the next night (and we don’t even have children yet)! I also have laundry which needs to be done, and I am kicking myself for not making my own laundry detergent yet because the store detergent is expensive. Today, I have an appointment with my ENT at University of Chicago as well. I’ve been having bad sinus headaches, bloody noses, and swollen lymph nodes in my neck/shoulders, so I think it’s time that I am seen. I’m not looking forward to the drive, but hopefully I can find some relief from the pressure. 

So, it’s a busy time until the weekend, but it will all be worth it the moment that I wake up with my sweetheart next to me and knowing we have nothing to do for a few hours. Best. Feeling. Ever. 

My Sister’s Journey

If you had ever told me that my sister would be going through things that CFers usually go through (getting a port put in, having an NG tube, and a few other things), I would have laughed at you. The sad truth, however, is that she is having to go through all of this and more due to her cancer diagnosis. I am not going to explain everything which has happened since the diagnosis as it is a long story, but I will explain the highlights.

On March 6, our lives changed forever. My sister was admitted into the hospital due to abdominal pain, and upon completion of a CT scan, we found out that there were lesions on her liver. She was immediately set up for a scope, and the next morning we found out there was a large tumor in the colon. The colon and liver were then biopsied, and we anxiously awaited the results.  On March 8, the doctor came in and told us that Ellen has Stage IV colon cancer.

Needless to say, our lives were flipped, and things that used to matter suddenly didn’t have any place in life anymore. I found myself going through so many different emotions including guilt and anger. Immediately, however, I knew we were going to fight this. What I didn’t know at that time was just how strong my sister is. 

I’ve always known my sister had a strength that couldn’t be denied, but seeing her go through this battle with such faith, courage, and dedication has truly impressed me and inspired me. Up until this diagnosis, everything had always centered around me as I was the “sick one.” It truly never crossed me mind that my sister would ever have to fight a battle like this as I foolishly felt that I have fought enough for the entire family. Yet, here we are, fighting away and hoping for remission soon. And boy has she fought. From day one, there was a dedication and a fire to her that I can’t exactly put into words. Things that I was worried about for her to deal with, she has taken in stride and just kept going. She has changed her entire diet, and she has maintained a positive attitude throughout. She’s ready to be cancer-free and to help others who are going through this journey. Talk about a hero…she truly is mine. 

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Since the immediate diagnosis, we’ve had a hiccup or two. Overall, however, it has been pretty good news. After just four treatments, the chemo worked to shrink the liver tumors by 20-35%!! Also, where the liver tumors are, they feel confident they can cut them all out and she will still have half her liver which will hopefully regenerate itself with time. This news as incredible to hear, and we were so excited to learn that the doctors feel surgery is a good option at this point.

In fact, surgery is scheduled for June 12. On that day, the doctors will go in and take out half the liver and a good chunk of the large intestine in order to get as much of the cancer out of her as possible. It’ll be a big surgery, but I know my sister has the strength to fight all the way through it! From there, chemo will start up again and will continue for 6 months or a year, depending on what the doctors decide. The goal here is to take out the big tumors on the 12th and then kill off any rogue cancer cells that have spread to other areas of the body. 

Needless to say, if you are the praying type we would appreciate any extra prayers you can spare as she continues through this journey. Good thoughts and well wishes are also VERY appreciated! It’s been a rough few months for my  family, but I’m anxiously awaiting the day when we can say my sister is cancer-free! She and I have her wedding to plan and a trip to Disney in our futures!! 

My Scope and My Sister’s Appointment

Wow. What a BIG week for my family. 

Last Thursday, I attended my CF clinic while my sister met with her surgical oncologist. It was a stressful day, to say the least. I was a nervous wreck as I did my PFTs (Pulmonary Function Test), anxious to hear what the surgeon was telling my sister at a nearby hospital in Chicago.  I was anxious that my lung function would go down from the stress of the last few months, I was anxious about getting the approval to go ahead with infertility treatments next month, and I was especially anxious about whether or not my sister was all set for surgery to remove the cancer. I also had nothing to eat that day as it was the day before my colonoscopy and I was only allowed to have clear liquids. 

For starters, my body is stronger than I previously thought. Even with the stress of my sister’s diagnosis, my father-in-law’s passing, and my great-aunt’s passing, my lung function stayed stable. I was 85% this time (86% last time, which is considered unchanged).  I was STUNNED. I never expected to be this high, but I was grateful. My oxygen was also at 100% on room air, and I sounded nice and clear. In addition, my doctor didn’t even hesitate when she told us to go ahead and start infertility treatments next month. Needless to say, it was a good appointment. My mom and I left thinking, one down, one to go. 

We headed back home to change really quickly and then headed to the local hospital. I was to be admitted for my scope prep due to the fact that I have a prolonged QT interval, and the doctors felt it would be safer for me to be on a heart monitor while doing the prep. I wasn’t thrilled about being admitted, but I went along with it. This was my first time overnight in a hospital since I was 17.  

I checked myself in, and I prepared for a long night of prep.  Basically, I had to drink two 16 oz glasses of a strong laxative, and then follow that with 64 ounces of water. The prep tastes horrible, and the laxative effects aren’t fun, but it’s well worth it to get checked out when you have a family history of colon cancer. The first half of the prep didn’t go so well for me as I didn’t take anti-nausea meds prior to starting it. Once the nausea meds were on board, I was fine to finish it. The second half of the prep went just fine since we let the meds kick in an hour before starting the prep.  I didn’t feel queasy once, and I was able to keep it all down without an issue.  

The scope showed that I had a polyp which was removed during the procedure.  I wonder how long it would have been inside of me if it hadn’t been for my sister’s diagnosis. I had no pain, no issues, and no reason for a scope aside from my family history.  The problem with polyps is that they have a tendency to become cancerous. This is why they are instantly removed when they are found during a colonoscopy.  I’m so grateful that it was found and removed!! Due to the finding of the polyp, I will have to repeat my scope in three years to make sure I am still doing ok.  

As for my sister’s news. . . .we actually found out about my sister’s appointment about four hours into my hospital stay. The surgeon said that he wants to go ahead with surgery in early June!! We’re so happy that they are setting up for surgery and will remove the tumor from the colon!  The plan is to cut out half of the liver, and remove a good portion of the colon. It will be a big surgery, but my sister is a fighter and she will come through it with flying colors! The other half of my sister’s liver is in FANTASTIC condition, which is great because it gives it a higher chance of regenerating once the surgery is complete. The only problem is that in order to prepare for surgery, my sister has to stop chemo. The surgeon said that they will do a scope and a PET scan the day of surgery, but if anything has spread the surgery will be cancelled and she will have to go back to chemo. He called this a “leap of faith.” As we await the beginning of June, please keep my sister in your prayers and thoughts. We’re praying that the cancer does not spread anywhere else so that the operation can take place! 

March 2012: One of the Most Difficult Months

I can’t believe that it’s been nearly a month since my last post, but then when I think of everything that has happened it makes sense.  At first, I was avoiding blogging because family needed to know what was going on with my sister prior to the world finding out.  After that, life got pretty busy and pretty tough extremely fast.  I guess the only place to start is at the beginning. . .

Around midnight on March 6, 2012 my sister went into the hospital due to excruciating abdominal pain. Immediately, the E.R. staff performed an abdominal CT which showed lesions on the liver and swollen lymph nodes. She was promptly admitted and scheduled for a colonscopy the following morning. Upon completion of that, they found a large tumor in the colon which was biopsied.  Although it had yet to be confirmed by the biopsy, it was pretty obvious by that point that my sister had colon cancer.  Due to the tumor in her colon, they also biopsied her liver to discover if the lesions there were cancerous or not as well.  The results came back that those lesions were also cancerous, and suddenly we heard the term “Stage IV Colon Cancer.”

Our lives were completely flipped upside down that day and almost instantaneously we became familiar with words that previously never entered into our conversations “Chemo, radiation, oncologist, Folfox, Avastin, cancer,” etc. Things moved pretty quickly after that, and she has already had two chemo sessions and has met with a surgical oncologist up at Northwestern. I will post more in detail about what’s going on with her within another post.

Due to the diagnosis, life was pretty hectic for David and me, and we were trying to spend as much time as possible with my sister.  Just as things felt like they were returning to a somewhat regular pace, we learned on March 29th that my father-in-law (David’s father) passed away unexpectedly from a heart attack. The news was shocking, and yet again our world was flipped upside down.  We immediately headed up to Michigan so that David could help his brother with arrangements. Then we came back to Illinois, and returned to Michigan a few days later for the wake and funeral. My father-in-law was a great guy who always complimented me on my writing and my personality. He took the time to make sure I knew how special he thought I was, and I will always be grateful for that. In the very near future I will be writing a dedication post to him.   

Life has been difficult since then, and we miss him dearly each and every day.  We have been trying (yet again) to reach that sense of normalcy that we once had.  Sadly, while trying to recover emotionally, we found out that my great aunt passed away on Good Friday. We will be attending her wake and funeral tomorrow evening and Friday morning respectively.  

To say that March was a tough month would be the understatement of the year. March was extremely difficult on us, and we clung to each other harder and more often than we ever have before. As sad as the situations have been, the one benefit is that our relationship has become stronger than ever before. I know, beyond a shadow of a doubt, that we will handle whatever is thrown our way as long as we are together. It’s truly amazing to feel that love and that bond with your significant other; it’s beautiful in spite of all the heartache.  

In addition to all the sadness we have felt, we have talked extensively and felt that it was time to share the other big issue we have been facing lately. Late last year, after trying naturally to conceive a child, it was discovered that I have infertility and that we will need to go through some sort of fertility treatment to manage a pregnancy. The reason I have chosen to share this is because I unfortunately do not believe that enough women talk about this, and the subject is seen as very “taboo” in our culture.  Sadly, because of this many women feel alone and frightened throughout their journey.  My hope, when I began this blog, was to help someone else in some way, shape, or form. If I can possibly help someone who may also be going through infertility to not feel as alone, then I will have succeeded in my goal.  The scope of an infertility diagnosis and what our options are is too large to condense into this (already long) post, and therefore it is yet another topic that I will be writing more thoroughly about in the near future.  When I write about infertility, I will not be giving all the details and specifics, but will share my journey as much as possible.  Please bear with  me over the next few weeks as I begin to blog about all that has been going on, and please don’t hesitate to e-mail me or comment with any questions you may have!

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Words we have been living by recently...