Storm In Your Life?

My neighbor has a home in Morehead City, NC. A fun little beach cottage she and her husband just finished remodeling and it sits right in the path of Hurricane Florence. We chatted at the mailbox last night about holding things loosely and doing the next right thing. Often when faced with some sort of adversity we may freak out, which doesn’t really help us at all. Other times we may try not being bothered in the least, which isn’t actually real. Either option is an extreme and extremes don’t tend to be beneficial.

So what does balanced look like? It’s when we are aware of the emotional impact of whatever is happening but we don’t allow the situation to own us. In my neighbor’s case, she feels the sadness of what might happen but recognizes she doesn’t actually know yet so she is holding some hope that perhaps things will be fine and if not she will then deal with it. Her words, “I’m taking the next right step.”

Closer to home, Anna (my daughter) is going through chronic rejection of her transplanted lungs. I’m focusing on what we know now: she’s fine, she’s humming along living her life even though she is well aware her lungs are failing. This is a slow progression for the time being so no action is necessary at this time. Anna understands this balance of living in reality but not letting her emotions take control. From her blog post in July:

“…yet as with all my fears they turn out to be not so bad and the things that suck are things I never really saw coming.  Trust me I know from experience God really meant it when he said “DO NOT BE AFRAID”. There really is no point, it does nothing but get us all worked up, steal our present moments and lock us in a box of fear.  Everything I have ever been afraid of happening that has happened was actually okay, there was no reason to get all worked up.  And yet God also knew what he was doing when he said it over, and over, and over, and over, and over, and over, and over …. okay you get the point. Not being afraid is something I have to constantly remind myself.  My latest mantra is the little bit of the song “don’t worry, about a thing, cuz every little thing is gonna be alright” and it is true!”

“Every little thing is gonna be alright” doesn’t mean everything will turn out as we want it to, but whatever it is, we can grow through it step by step.

Just Another Detour

I’m in Phoenix. That sentence is void of detail. You might have given it meaning that isn’t there. We do that. We hear, see or experience something and add all kinds of layers that don’t actually exist. You may have thought I’m in Phoenix to enjoy the sun and get away from the snow in Colorado. Or maybe I came for a conference. Both are inaccurate. It is raining today so if I came for the sun I wouldn’t be getting any today. It was sunny earlier so I did get to enjoy the tiny bit of sun I got walking from where I’m staying to the hospital. And yesterday when Anna was taken for X-rays. But that’s it. I am learning more about the medical world and the life of a transplant recipient, but it’s not a conference.

Anna developed pneumonia after first being exposed to parainfluenza 3 (a strain of influenza commonly affecting children and often the cause of respiratory illnesses). Another reminder to keep our sick selves and our sick children isolated until healthy again. 😉

Several of Anna’s transplant friends were hospitalized for pneumonia and they never got better. Just a reminder of the fragility of life but not the truth for Anna today.  What she knows is her body is responding to treatment. She is getting better. As of today, Anna is healing and doing well. Her focus (and mine) is on what we know to be true and real today.

I am in Phoenix. Now you understand what that really means. Remember to keep your focus on what you know is true and real, beyond a shadow of doubt. You will experience a great deal of peace and save the anxiety, sadness or anger until absolutely necessary. 😊

Look Who’s Turning 25!

Many of you have followed my daughter, Anna’s journey with Cystic Fibrosis, a lung transplant and cancer. She is still doing really well and turns 25 tomorrow!!! I can hardly believe I have a 25 year old daughter…I was 10 when I had her! 🙂
She survived another round of rejection this summer, still shows no signs of cancer and is back in college hoping to graduate in about a year and a half. Happy Quarter of a Century Birthday, Anna!!!

Predicting The Unpredictable

I don’t really mean we can predict what’s going to happen but we can predict there will be winding, unexpected occurrences in our lives. I’m certain you know what I mean because if you are breathing you have experienced some moments or seasons you did not think were going to happen. Sometimes they can be good things…sometimes they don’t seem good at all. The best job you can imagine…a baby…a broken bone…a new house…a free cup of coffee…an accident…a call from a friend…a broken water pipe…cancer…a puppy… I could go on but I think you get the point. We have no idea what is going to happen in the next second, really. We can guess and sometimes our guesses are spot on but we don’t really know. Anything can happen. And you know what? That is life.

One of the biggest dangers we can get caught in is believing we know what’s going to happen. We are making assumptions and you know what they say when we assume? It makes an ass out of u and me. What’s even worse is we set ourselves up for disappointment. We can slip into an emotional downward spiral because we assumed or predicted and we were wrong. One of the best words of wisdom I’ve heard was from a man named Toby Shope. He was preparing me and others for a journey to Afghanistan. We learned how to dress and act to honor the Afghan culture.
Toby taught us to have a blank slate approach to our experience. Just let the canvas be filled in as I take each step of the journey. This concept has helped me so many times since the day I learned it in 2010.

My daughter Anna, whom I have mentioned in many previous posts, has Cystic Fibrosis and received a lung transplant in 2013. She’s experienced so many set back and challenges throughout her life. Just recently she learned she has rejection. At this point it’s treatable so we are hopeful. Learning of the rejection was a reminder that so much in our lives is out of our hands. The less I cling to what I think should happen the easier it is to accept what is happening…to let the blank parts on my canvas of life be filled in as I take the steps rather than having to waste a ton of energy erasing what I thought would happen and then trying to fit what is happening on top of the erased parts. It’s cleaner if I just let it happen…it’s going to happen anyway.

Anna’s Raising Money for Cystic Fibrosis Research

Anna, my 24 year old daughter, wants to get as many people as possible to help her raise money for Cystic Fibrosis research. The Cystic Fibrosis Foundation is one of the most fiscally responsible non-profits, ensuring that nearly .90 from every dollar raised goes to support research and programs for Cystic Fibrosis. To raise money, Anna is leading a team for the Denver Climb, a grueling stair climbing race held at Invesco Field/Mile High Stadium on June 25. If you want to join her team or support her team members click here

She is also selling her “I Love a Lemon” t-shirts with all proceeds going to the Cystic Fibrosis Foundation. Click here if you want to buy a t-shirt but hurry because sales close at 11:59p this Friday June 13…sorry for the short notice!

The phrase “I love a lemon” came about after Anna was diagnosed with PTLD, a form of lymphoma that affects transplant recipients. Her sister, Grace blurted out, “Anna, you are a lemon!” It was funny to all of us, including Anna and she has been our lemon ever since. If you have just one major issue it’s bad enough but Anna has had four! She put together a video capturing her journey through life so far. If you’re interested in watching that, click here

Thank you!                                                                                                                                                              Karen

Update From Anna

Anna is my 24 year old daughter. She has a genetic disease called Cystic Fibrosis. It makes all her mucous extra thick and sticky. The effects cause life threatening issues with digestion, the pancreas and lungs. On October 12, 2013 Anna received a double lung transplant after her lungs failed to sustain her life. Nine months after her transplant she was diagnosed with PTLD, a form of lymphoma specific to those who have received transplants due to the anti-rejection medication transplant recipients must take for the rest of their lives. After six months of chemotherapy, Anna was and continues to be cancer-free. She went back to college at Grand Canyon University in Phoenix last August after missing two years. Here’s her latest blog post:

http://ontonewwindows.blogspot.com/2016/04/its-end.html

 

Another Anna Update

Anna was at Duke University Clinic last week for a check up.  She had a bronchoscopy (bronch) and learned she does not have rejection!!!  No rejection means longer spans between bronchs and are a sign that her body is, at least for now, accepting her gently used lungs.  She has an infection and started a round of antibiotics that should take care of it.  It’s not debilitating and she continues to go to classes and work on making friends.  She says Pepper has more friends than she does.  This is not hard to believe because cute fur balls who love people generally attract a lot of attention! 🙂

Today is a big day for Anna.  It is her Golden Birthday!!!  In case you don’t know the magic of the Golden Birthday, it’s the day you turn the age of your birthdate.  Today is September 24th and Anna is 24!!!  I seriously can’t believe I am the mother of a 24 year old.  I’m turning 50 at the end of this year so I guess it makes sense, but I still have a hard time believing how quickly my first-born has reached this Golden Birthday!  We are all certainly thankful she has!  I don’t really care that I have to get older in order for my children to age.  There’s something about the years marching on that brings me a sense of “this is how life should be” and I like it.  I could do without the slowing metabolism, disintegrating muscle tone and loose skin but if that’s part of the price I must pay to watch my children flying out of the nest and on into their lives, then so be it.  I’ll try to keep my vain complaints to a minimum 🙂

If you want to wish Anna a Happy Birthday you may do so at her blog or on her Facebook page.

Happy Thursday!

Karen

Look Who’s Back at School!

After a two year break from going to college my daughter, Anna, along with her service dog, Pepper, is back on campus! She is so excited to just be a normal 23 year old. She spent the last two years getting a double lung transplant and then cancer. These were not at all part of her life plan! That is the nature of life though, lots of unpredictability. Sometimes it’s good and sometimes not. Anna has learned to take life in stride. She doesn’t assume everything will go well but she doesn’t live under a cloud of doom either. She lives in that sweet spot of “it is what it is” one moment at a time, one step at a time, one breath at a time!

Reflecting On The Last Year’s Journey

It has been almost a year since my daughter, Anna started on a new journey…cancer.  She had been lethargic and nauseous for a week or so.  I’m divorced and my kids have been alternating from their dad’s house to mine on a weekly basis for 10 years.  I hadn’t seen her for a week and she looked awful to me. I suggested she call her doctor (she was 22 then and responsible for making her appointments and communicating with her medical teams).  She got an appointment with her cystic fibrosis (CF) Dr. who thought the problem was an intestinal blockage and sent us home with a colonoscopy prep cleanse.  Not for a colonoscopy, just for cleaning out the pipes.  It didn’t produce much since Anna had not eaten for several days.  The next day she felt worse.  I took her for her regular lab draw and she could barely walk due to dizziness.  She was so pale.  Something was wrong but we didn’t know what.  After the blood draw, she said she felt like she did after her lung transplant when she needed a few units of blood.  I told her to call her Dr. right then and find out what to do.  Thankfully she instructed us to head to the ER at the University of Colorado Hospital.  That was the beginning of discovering she had Posttransplant Lymphoproliferative Disorder (PTLD), a form of lymphoma.

At the time, our world was spinning rapidly out of control.  We have dealt with hospitals and doctors since Anna was four weeks old, the day we discovered she had CF.  We’ve gone through the challenges of a double lung transplant.  But cancer!?  It just seemed like too much and everything felt new and exhausting.  It was a turn in our lives that sent me reeling at times.  I remember fighting to keep myself from spinning wildly out of control with fear and anger.  It felt like a monster grabbing for my ankles, its nasty tentacles hungry for something to devour and I was its target.  That was by far the worst season of my life. And it’s over…it’s over!  It’s been over since last December when we heard there were no signs of cancer in her body.  Chemo worked its magic.  It doesn’t always work, not for everyone.  One of Anna’s transplant friends who was diagnosed with PTLD near the time she was, died.  He didn’t get to hear, “There are no signs of cancer in your body.”  But we got to hear it.  I hate that part, not that we got to hear it but he and his family didn’t.  Surviving is a gift but it carries with it the reminder that not everyone survives.  Whether it’s cancer, CF, a plane crash…some survive and some do not and that knowledge is just plain heavy.

Anna recently had another visit to the shiny medical capital of Duke University Hospital in Durham, NC.  She got to hear again that everything looks great!  All her numbers, the indicators of her health, are pointing toward success.  Her lungs have expanded since her transplant, filling her chest cavity beautifully, happy in their new home.  Her blood work indicates no signs of cancer.  Her Dr.s beamed with pride and excitement about her robust health.  They spoke this audibly so she, her grandmother (my mom) and I could hear it and share in the good news.

Tears are filling my eyes while recollecting the past year and seeing where our journey has brought us, at least for now.  I also fully recognize, having lived it at extremes for a few years now, that life is unpredictable.  At any moment our world can change.  I’m challenged to find the balance of enjoying the now while embracing the unknown. Just holding it with curiosity, wonder and healthy respect.  Not fearing it and allowing it to consume me unnecessarily.

We Keep Moving Forward

When I hear about people’s heartbreaks and difficult circumstances, I usually wonder how they get through it. After all I have experienced with my daughter, I know how we get through the tough stuff: one step at a time. We just keep moving forward, dealing with the diagnosis or sad news. We cry, we yell, then we get up and do what we have to do each day. There’s no magic formula and there’s nothing really special about us when we do this. Like, we have some super power that others don’t have. I think it’s woven into our being to survive.

Now and then a person will be so paralyzed by fear or depression they give-up and check out. These situations are more the anomaly than the norm. And to some degree it may be the cards they were dealt that screw with their brain chemistry; it could be recreational drug use (drugs can negatively alter our brain chemistry so drug users beware!). If you find yourself in this category, get help. While psychiatric medications are not always the answer and can’t help everyone, some need them, just like a diabetic needs insulin injections to survive.

Update on my daughter: She was diagnosed with stage 4 Lymphoma and is just finishing a five day chemo treatment she received at Duke University Hospital. She’s doing well. Not too many side effects yet. We’ve heard the first round is the easiest. She’ll be coming back to Duke at the end of the month for her next round of chemo. She’ll do this about six times. In between chemo, we’ll be in Colorado. We’ll see how things go, but at least for now Anna gets to be home!