A Silent Warrior

For most of the past two years, and for no obvious reason, I’ve been pulled from sleep once or more a night by pounding in my ears and racing heart. I’ve thought for a while I should see a doctor about it, but until recently I have had neither the time nor energy to go… But I have finally, in the past few months, gone to a variety of doctors and basically figured out on my own why this has been happening. (And if you’ve followed our journey with our daughter, Jenna, you will probably think – Duh! – about my conclusion.)

But before I had it figured out, the racing heart and pounding ears actually improved. Jenna started sleeping through the night most of the time and we didn’t need to give her any medicine or change her feeds during the night. For the first time in years I was able to sleep more than 3 hours at a time (sometimes even 5 or 6 hours straight!) I wasn’t waking as often with a racing heart and the pounding was much softer in my ears. I thought – Hurrah! It’s just caused by sleep deprivation. And I think that does have something to do with it, but

… Now as we approach the end of Jenna’s almost 1-1/2 years of chemotherapy and we prepare to put her on the liver transplant waiting list, my heart is racing once more and the pounding in my ears is again loud. We’ve known this was coming for many months and I have felt something between dread and terror, not only about Jenna getting a liver transplant but also about her chemo ending. It seems obvious now, but Doh!… clearly my symptoms are a product of stress and anxiety!

That led me to another question. Could it possibly be symptoms, at least partly, of post traumatic stress that have plagued me these many, many months? It’s been 10 months since Jenna’s last major round of chemo, 8 months since her last hospital stay and almost 6 months have passed since our last middle-of-the-night ER trip yet I have had similar symptoms of stress recently that I did 6 months ago.


January 2013 

Post Traumatic Stress

Curious, I Googled “Post Traumatic Stress Disorder and Parents of Kids with Cancer“… Pages of results! Apparently it’s not at all uncommon for parents, and even older siblings, to develop some type of post traumatic stress after their child (or sibling) is diagnosed with cancer or a life-threatening disease like LCH.

Symptoms can come and go and may continue for years afterward. One study I read about found that 30% of fathers and 41% of mothers all showed symptoms of post traumatic stress. Another study found that only ONE out of 171 parents of children with cancer DID NOT develop post-traumatic stress. The constant dread parents of children with cancer experience, the feeling of helplessness and fear of the cancer returning and their child having to go through more chemotherapy, hospitalization, radiation, etc. was discussed in another article. Uh, yeah!

Another article talked about how the anxiety of possibly losing one child then rolls to your other child, your spouse, and other family members. I could totally relate to this as well. My son recently had a headache for a few days – nothing that Tylenol didn’t help, but I had fleeting thoughts of him having a brain tumor and dying. And when Jenna is asleep, if I can’t hear or see her breathing, my first brief thought is she has died. Even these passing thoughts are enough to get my heart racing again for hours, even days or weeks. (This should have been a clue to the cause of my racing heart! Sheesh!)

Symptoms of Post Traumatic Stress Disorder (PTSD) may include flashbacks or upsetting dreams about the event; hopelessness, feeling numb, trouble concentrating, avoiding thinking about event; irritability or anger, overwhelming guilt, self-destructive behavior, trouble sleeping, being easily startled, and/or hearing or seeing things that aren’t there.

There are different types of post traumatic stress disorder, from a “normal” response to stress to Complex PTSD, and different forms: acute, chronic and delayed onset. While the degree of symptoms I experienced has diminished over the last 6 months, in hindsight I was probably experiencing acute PTSD during and for a few months after the most intense parts of Jenna’s chemotherapy. In addition to the racing heart and pounding in my ears, I wasn’t sleeping well, was seeing things in my peripheral vision that weren’t there, I felt numb and had trouble concentrating, and was easily startled. As time has passed and Jenna continues to be in remission and stable, I have, overall, felt better and better.


November 2013

Preparing for a Liver Transplant

Almost 8 months ago I received a one-inch-thick information packet from the Liver Transplant Team. I could barely look at it without feeling sick so, shortly after it arrived, I hid it in the back of a drawer. Last month, when Jenna’s oncologists said they’d probably be ending her chemo sooner than expected, I knew I’d have to get the packet out and start reading… Just getting it out of the drawer, putting it out where I could see it and THINKING about starting to read put me into a tailspin. It took days to actually begin reading… But, I have begun… Reading about what happens before, during and after a liver transplant is difficult and I often have to stop for a few days to process and talk about what I’ve read. Now that I’ve figured out why, it’s not surprising this anxiety is causing my heart to race and ears to pound again.

To help me cope, the therapist we started seeing recently has encouraged me to acknowledge and validate my feelings and thoughts about the transplant. In essence, to tell my “story” about it. I have no power as long as I am at the effect of my “story”. To do this, I’m acknowledging reality – a liver transplant is a major surgery and there is little about it that is predictable; my feelings – I feel terrified my girl is not going to get through and I feel completely helpless and out of control; and my thoughts – there are so many things that can go wrong, she’s not going to make it. If she doesn’t make it, how will I possibly make it.

As I acknowledge and validate my thoughts and feelings, our therapist says I can then “infuse” my “story” with love, honor and courage (or whatever I want). When I think about infusing my “story”, I think about coming from my heart instead of my head. My mind continues to churn out thoughts that make me feel afraid, causing my heart to race and ears to pound, but my heart knows the true “story.” My heart knows the love I have for my daughter and all I have done and will continue to do for her. My heart knows that in this moment, all is well. When I’m in my head… turmoil. When I’m in my heart… peace.

Lastly he suggested I think of myself as a Warrior Princess – Pfft! So not me!… I think I’m more the Silent Warrior type. I do the work that needs to be done, I care for my daughter with love, patience and courage. While feeling vulnerable, I am, most of the time, strong, because I have to be. A mom we’ve met whose daughter also had LCH and a liver transplant said about her experience, “You get in the ‘zone’ and just soldier on.” My mom might say it comes from our pioneer heritage… “Put your shoulder to the wheel.” I don’t feel like a warrior. I’m not out there fighting for a huge cause like raising money for cancer research, but I am fighting, quietly, for Jenna to be happy and healthy and ultimately to have a long, full life.


Silent Warrior

If I come across as being constantly enlightened and empowered about what is happening to Jenna, be assured I am not. It takes me weeks and sometimes months to articulate and process my thoughts to the point of sharing. For months I was in and out of breakdown and upset about my heart racing and ears pounding before realizing the cause and now I work on managing it all the time.

I’m not an optimistic person, as I’ve said before, so putting a name to what I already do, who I already am, is giving me a source to draw on when I feel afraid. Being a warrior isn’t about being impervious to fear and pain. It’s about being courageous and moving forward in the face of it. Everyday I am faced with my fears about Jenna’s future. Everyday I am challenged to stay in the present while still preparing for what’s to come. Everyday I need to articulate my “story”, validate my feelings of fear and thoughts of imminent doom, and “infuse” my “story” again with love and courage. I am just a regular person dealing with extraordinary circumstances. But I am also a Silent Warrior and I am up for this challenge. So… Bring it!


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Posted in Blog Posts, Fabric of Life, LCH and Chemo, Liver Transplant Tagged with: , , , , ,

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