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.

Rest Stop

I am pulling off at a rest-stop on our journey toward more successfully navigating the holidays to bring you an update on my daughter. If you are just reading this blog, I will bring you up to speed. I have a 23 year old daughter. Her name is Anna and she writes her own blog, On To New Windows and doesn’t mind me sharing her story with you. She was born with a genetic disease called Cystic Fibrosis (CF). It’s a nasty disease that messes with the digestive system and lungs. Besides having a terrible time gaining weight and needing insulin injections to level-out her blood sugar, Anna’s lungs deteriorated every day. Eventually, they became worthless at sustaining her life. Her only chance at survival rested on receiving a double-lung transplant. She was fortunate to get a wonderful pair of gently used lungs from a still unknown deceased donor on October 12, 2013 at Duke University Hospital.

After about six months of recovery, Anna was beginning to feel fabulous and started making plans to go back to college and pursue the life of a regular 22 year old. Without warning, she started getting really sick at the end of May. She was having trouble keeping food down, lost her appetite and grew more and more pale with every passing day. As if she hadn’t already been through enough, she was diagnosed with Lymphoma in early July. After enduring five months of intense in-patient chemotherapy there is no sign of cancer in her body!

Her once bald head is now covered with tiny hairs, her budding eyebrows and eye lashes are visible again and she feels energetic. Her lungs are strong and currently rejection-free. She is perfectly poised to get back to school and pursue her biology degree. Just wanted to share this good news with you!!!

On Being In-Between

Sometimes we live in limbo. It seems we are in-between steps in our journey. We are finishing one step and preparing for another step but it appears that nothing is happening in that space. Are you there? Have you ever been there? Is it possible you might be there again someday? I know this place and I’m beginning to think about it differently. I don’t think limbo is really limbo. I think it’s just a part of the process of living and as much, if not more, happens in our development during that phase.

A year ago I was temporarily living in Durham, NC while my daughter got a life-saving double lung transplant. On October 12, 2013 she received her transplant and was recovering at Duke University Hospital. That journey was full of waiting: waiting for an answer on what to do about her damaged-by-Cystic-Fibrosis lungs, waiting to be on the waiting list for donor-lungs, waiting with mixed emotions for the “right” person to die (loss for one family meant life for my daughter…hard to work through that!), waiting for her to heal after her surgery, waiting for rejection to go away, waiting for getting back to living a normal life. Now we are in a new waiting phase as she has battled lymphoma since June. Today, it’s waiting to find out if the chemo worked. We won’t have an answer until early December.

Lots of limbo. Going through this season has been one of intense growth. It isn’t about waiting for the situation to change. It’s been about growing each moment of each day while not knowing very much about the next moment. But isn’t that how every day is, really? We never know without a doubt what is going to happen in the next moment. We think we do. We have bought into the lie that we have control and things should work out the way we want them to. As time is marching on and we are less insulated from the pain and unpredictability around the world, we are beginning to understand the concept of living in the moment and not hanging on too tightly to our expectations of how we believe life should be for us.

I challenge you to accept where you are right now. You don’t have to stay there forever, but it is reality for right now. Growing has more to do with accepting reality than pretending it’s not happening. Are you thinking about ending a relationship, changing jobs or in the middle of your own health crisis? You’re not certain of the ending, but to be certain is an illusion. Do what you need to do to get through this moment. Sometimes that may be taking a breath, feeling the air come in and out while acknowledging your presence in the here and now. You may not have the answers right now, but that is ok. I believe the answers will come in their time. As you breathe, let go of the need to predict your future. You can’t predict it and hanging on to the future is sucking energy and focus that is useful for growing in this moment.

I found this quote and put it on the wall of my daughter’s hospital room while she endured her chemo treatments:

“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” ~Vivian Greene

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!

The Roller Coaster

I’m sidetracking from the theme of my recent posts and will get back to them in the next few weeks. For now, my roller coaster car is slowly, loudly, frighteningly clicking it’s way to the top of yet another peak. Last October my 22 year old daughter received a life-renewing double lung transplant. Last Friday she ended up in the ER in Denver with very little blood in her body. She needed blood but wasn’t bleeding from anywhere. So what happened to her blood? After a few tests, the culprit seemed to be cancer. Anna and I flew in an air ambulance back to Duke Hospital for further testing. This week, we heard again that she likely has cancer. We do not have any definitive results yet, but everything is pointing toward a version of lymphoma that is hand-picked just for transplant recipients: Post Transplant Lymphoproliferative Disease. At this point nothing is for sure, hence the click-click-click as my roller coaster car inches up, up, up. It may be chemo, it may be a different, less intense drug therapy, it may be we stay in North Carolina, it may be we go back and forth between NC and Colorado, it may be any manner of events; it’s just a lot of “may be’s”.

That’s how life is sometimes. We don’t know what to expect. We only know this moment in time. We only know to breathe in and breathe out and then do that again. Support is key during times like this. Reach out to those who can hold you right where you are. If you need to grieve possibilities, name them as possibilities and let the tears flow. If you’re angry, then let yourself feel the anger and give it an appropriate outlet. If you are gripped by fear, name it as well and let it have its space. Though it’s important to process what we know is true and real, possibilities are, at times, all we have and we find them affecting us. We give them a place to be heard and expressed so they can be processed.

Click-click-click, breathe-breathe-breathe