My experience as a caregiver in the cancer world brought a personal awareness to the fact that in spite of the difficulty of giving the reins of control over to someone else or letting go of them completely, it was one of the most important goals I asked of myself. I learned the best way to honor a person who is dying is to allow that person to LIVE the way in which THEY feel the most secure and fulfilled, not in the way it pleases those who will remain after. That can be a monumental challenge when the one who should hold the reins is your 18-year-old child, who is not really a child anymore after all she has endured. The release of the innate motherly response to attempt to fix whatever was wrong, and thereby allow and encourage Erin to make the really significant decisions, was an often daunting and deeply humbling task. Under the typical circumstances of the common cold or flu, we moms fix everything through the loving administration of chicken soup, a blanket and sometimes an antibiotic. Doesn't work here. Those items certainly offer comfort but, to put it mildly, cancer is unique.
Watching my child LIVE life with an impending deadline was a surreal novel with many chapters. Drawing the line between what SHE wanted or what was best for HER, as opposed to what I sometimes thought was needed, required ongoing selflessness. I found that what Erin wanted most was normal, day-to-day activity; being with friends, attending school, coaching volleyball, an evening at Tropical Snow... without the rehash of ongoing cancer issues of the time. She didn't have a "Bucket List" of I HAVE TO DO ALL THESE THINGS BEFORE I DIE desires. At times there was that frantic urge on my part to make things just-so. On some of those occasions, it was just-so for ME, not Erin.
Gradually, I learned to do better and I grew in appreciation of the simplicity of just being present, soaking in the extraordinarily enhanced vista of each day.
Once it was apparent that the cancer was wreaking havoc in spite of the chemical counter-assault we were waging, I stopped looking at scans. Scans made me ill. Looking at what was going on inside Erin's body seemed to be in direct contradiction with what was going on outside, and I preferred the seat with the exterior view.
In spite of being tethered to necessary treatments, the beautifully intact girl on the outside was still going out with friends, attending school, happy and engaged in life. The monster on the inside, that stubbornly ignored our plea for an exodus, was artfully crawling its way through her, and finally the only thing left to do was to put out the fires that stealthily flared. NOT looking at the scans was in no way a case of denial. I was PAINFULLY aware of what was happening. It was a conscious choice on my part not to focus on what I could not control. Others cope by feeling the need to know every minute diagnostic detail. That's fine. Their cancer, their choice. In the beginning stages of treatment it was a different situation, but in the latter part I chose otherwise. Because we had complete trust in the doctors to make the best medical decisions upon review of the scans, the reins were handed over to them. I felt my job was to support Erin's wishes and make her life the best it could be when we walked out of the hospital building.
(I can't accurately read a scan anyway, and I certainly don't know how to determine the most appropriate medical tactic based on things lighting up on one scan and then showing shady areas on another. It takes years of expensive schooling to achieve that ability. It is not my forte.) In order to do that with confidence, we needed to establish a flight pattern with Erin's doctors, with all wishes and goals COMPLETELY understood by ALL parties involved. We did. And because we did, we let the doctors take the reins, read those scans and decide the best course of action. Essentially, we made the decision to soften any mounting turbulence and achieve as smooth a landing as possible. When I couldn't sleep at night, I wanted to see Erin's smiling face in my mind's eye, not a bone scan or a PET scan, with lit-up hot spots making me want to jump out of my skin and scream FIRE FIRE! The ability to put fearful thoughts aside, or keep moving in spite of the invasion of cancer takes a lot of practice. To be able to go about the normal activities of school and a job when "Yes, there are tumors in her lungs, but not-to-worry, there is still plenty of healthy lung tissue, and she feels fine." is such a bizarre concept. Just like, "If there is some bone pain in that area we can hit it with some radiation. Oh she has a test today? Well, we can certainly do it after school". (thank you Phil) Or, the one that took three years for me to reach "Well Erin, you and I are pretty sure those symptoms mean there's a lesion in your skull/brain, but it's Saturday and we don't want to have to go through the ER. Nach (her oncologist) will be back from his out-of-town trip on Monday to direct the course of action. Shall we just go to the state volleyball tournament tonight? Yes? All righty then. I'll shoot him an email and we'll call him first thing on Monday". Doesn't that sound absolutely insane? It does to me when I read what I just typed, but that's exactly what we did. It defies normal logic.
There is NOTHING logically normal about cancer.
And then, the ability to really let go, to give her my blessing to leave me, was the ultimate sacrifice. I recently read the email I sent out after Erin passed away, entitled "It was time". For those who were not on my list, this is an excerpt from my letter ~
What is important is emphasis of the fact that Erin was ready, for her life had become one that was too difficult for her to bear much longer. After a three-year battle that ended with this horrible, insurmountable consequence - the inability to move herself, Erin was tired - rightfully spent from all of it. That's not to say that she complained or stopped being her smiling, sweet self. She remained unequivocally "Erin" until the very end. The few of you who saw her can attest to that.
Erin left in peace, after spending that final day with all of us surrounding her with abundant love here in our home. It would have been selfish to want anything else from her.
-written January 4, 2010
As I read this now, several points stand out: That "she remained unequivocally ERIN until the very end". (Success. She held the reins.) That so soon after her death, I could vocalize "It would have been selfish to want anything else from her". And then there's the "all of us surrounding her with abundant love" part. Thank God... yes, thank God for all of it.
All that being said, I would give my right arm to see her and hold her right this minute. I would be lying if I said anything different, but that is my heart and not my head speaking those words. I know where she belongs now, and it's not in my arms. It's in her place of peace. Dear God, talk about sacrifice!
And now that she's gone I obviously can't control that and bring her back, but I can do something to honor her memory and help others in the process. The upcoming blood drive is something over which I have a degree of control.
Tying it to her birthday gives me something positive to focus on as opposed to the alternative - thoughts of her being gone that could EASILY consume me from now until that day. It certainly won't fix that fact, but by throwing energy into this, I hope to cushion the blow somewhat. I can't control who comes, but I can put it out there as an invitation to people, with the HOPE that they will choose to step forward and make a positive difference in the life of someone else. I had a slap-in-the-face, reality check every time Erin received a transfusion, and there were many due to her surgeries and mostly to the effects the chemotherapy finally had on her bone marrow's ability to produce red cells and platelets on its own. I was shocked to learn that only 3% of the Chicagoland population donates blood. I can understand a person's aversion to needles and blood. If you're nervous, I'll personally hold your hand, make faces, sing a song! I'm pretty accomplished at redirecting focus that tries to sway toward something unpleasant or fearful!Please check your busy schedules this weekend, try to make some space for May 15th and sign up. Thank you to those who already have. You'll be helping me, and you'll honor the memory of Erin and others like her who live a life that's VERY different from yours. Please consider TAKING THE REINS and sharing a bit of your good fortune. Be the change.
As I continue to walk through the days that I STILL think must be someone else's life, I continue to strive to control what I can, let go of what I can't, and pay close attention to often-unnoticed details that really make a difference.
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