My Extended Family Tree

My Internet family circle continues to expand as I hear from more people, through blog comments or via email, who have found my site while searching for someone with whom to hold hands in a communal bond as their lives are affected by cancer. I seem to be a "middle child" in birth order now. As one who has survived the stage of walking with Erin for three years as she lived with this wretched disease, I now look up to the "older siblings" who have gone before me. Having laid their precious children to rest, they are now moving through life without their physical presence, and I can find common ground with them as their experienced wisdom gained from forging steps ahead of me gives me hope and courage to continue to put one foot in front of the other.

I recently received a beautiful email from a woman watching the effects of this disease from the outside, so desperately wanting to do whatever she can to help her sister-in-law whose son has cancer. With her permission I'm sharing her words.

"...I find myself wanting to align myself with people who know what this disease is and have a deep understanding of all that it encompasses. Again, he is my nephew, I can't imagine how his parents are feeling... You see, I want to help- I just don't know exactly how. His mother is very quiet when it comes to this and doesn't vocalize her fears, needs, or thoughts...she would rather not impose on anyone and therefore saddles the brunt of this thing called cancer herself. You wrote in an early post that you didn't do the caringbridge or blogging during Erin's illness, that hit a chord with me. I have had such difficulty in understanding why my sister in law won't open up to me and have struggled with figuring out how to help her. I am a nurse and a helper-fixer-make it better person, and like I told my nephew - I wish I had a magic wand that would make it go away, for good... When you blog, you never really know who you are reaching with your words. Please know that your experiences have helped others who are dealing with this horrible disease... "

If only that wand existed.

Oh, the frustration and helplessness of those on the outside! I am slowly beginning to see it now in a way I couldn't when I was entrenched in the throes of it myself, so absorbed in the task at hand, and I can answer from my own perspective because the way this poor mother is reacting sounds all too familiar...

Some people respond to the tragedy of their loved one's diagnosis and ensuing treatment by reaching out to everyone, by describing the illness so others can know the medical details, by sharing information about scans, treatments, etc. with a preferred openness. In effect, they "gird their loins" with the whole community at their side. CaringBridge is a fabulous avenue of correspondence to accomplish this choice, and that's a beautiful thing for those inclined to cope in this manner. I will never criticize the way anyone gets through their personal tragedy, believing each must choose whatever method allows them their most effective lifeline.

I, on the other hand, turned inward with immediate family, and preferred to share detailed medical information with very few. It was my belief that people really only needed to know that Erin had cancer, and that fact, in and of itself, was horrible enough to elicit response from my community. It did. There was an outpouring.

Since Erin lived with Ewing's for three years, she (and therefore, we) went through SO many different stages as we rode the roller coaster of ~ The initial hope for a cure. The hope for disease stability after the quick relapse. The hope for a good live-in-the-moment life. The hope for peace in the end, and a whole lot of things in between. My reactions usually varied with the stages.

During certain times my goal was to perform the basic functions of eating, sleeping and breathing every few seconds to the best of my ability. For me there was little energy to do anything else, like communicate details to the outside world. In the beginning I went into a tailspin of anxiety, partly because I was in shock, but also because I tend to be a "fixer" too. As a girl who likes a plan, I was out of my element with this disease that defied all logic, and I had to learn, very painfully at times, to just go with whatever happened - to be as proactive as I could about what I could, and simply react when the many other things surfaced unexpectedly. There were times when I'm sure I was totally irrational because I was fearful of so many things, and there were times I just couldn't talk about it because talking made it more real. I was not in denial. I knew exactly what was going on. It simply hurt too much to vocalize it all. I just didn't want to.

As time went on and we became more entrenched in the cancer-world, it became a safe place, a place of routine. Everyone at the hospital, or at the day treatment rooms of both medical facilities where Erin did out-patient chemo, understood pretty much everything. The nurses were absolute angels here on earth, and they became another part of our extended family in a comforting way that is perhaps difficult for many to understand. Bess was Erin's nurse for most of the 75 sessions of out-patient chemo over her nine-month protocol just after her first relapse. Erin was balancing school full-time as well. Bess was like a big sister, not only her nurse but a trusted friend with whom she looked forward to spending time. Erin adored her.

During treatments we didn't have to explain anything. There was no pressure. They just knew, and there was comfort in that familiarity, and we gratefully settled into those routines. This was an ongoing way of life in Erin's situation because she received chemo for ALL of her three years with cancer, with the exception of a brief four months from the end of her first protocol to her 3-month scan relapse.

Since we had to live cancer day in and day out with all the treatments, we craved some semblance of normalcy - both Erin and I did, so when we were "sprung" from it, we just wanted to live without having to explain anything. Talking about it was distracting and it dragged us back into sick-mode as we tried to live in the moment. When the moment was good, we didn't want it clouded with tumor talk. I was also so intent on the outside world seeing ERIN (her desire) and not the cancer, and throughout the three years that she was sick she was able to carry on a pretty normal life in spite of this thing crawling stubbornly through her system.

My instinct, once she relapsed in February of 2008 and we knew that her life would end at some point, was to absorb every single bit of her before I was no longer able, and I got to do just that for almost two more years while she went about the business of packing life in each day. I simply wanted to be with her - period.

I immersed myself in her company, both when she felt well and when she didn't, because she was an absolute joy to be with at all times. She never complained, and I was blessed and inspired by her strength and her positive attitude. She did a spectacular job of LIVING until the day she died. I saw it all, and I carry it all in my heart now, and I wouldn't change a thing.

And I guess I didn't want to impose on others either. I'm a very self-sufficient person too, even when half crazy with worry, but in retrospect I can see how gratifying it was for people who felt so incredibly helpless to do things for me/us. It's just that most of the time I couldn't figure out what to ask them to do, so the open-ended, generous offering of "Let me know what you need. I'll do anything!" spoken by people so willing to help, was left just hanging there because I honestly didn't have a clue about what I wanted. My mind often couldn't think along those detailed lines.

Friends offered to stay with Erin, to "give me a break", and I found at the stages when she was so sick or recovering from a surgery, I couldn't leave her for long periods of time.

I was under more stress being away from her than I was when I was with her ~ calmed by the sight of her and the sound of her voice. (This was taken in March 2008 after her lung surgery. I want to crawl right into this picture with the two of them now. Everything would then be fine...)

At other times, when she was feeling well and in school full-time, even though she was constantly undergoing treatment of some kind or another, I held a part-time job, learning to juggle my way into the skewed sense of normalcy the cancer life imposes.

Bottom line, what I needed most was for Erin to be cured and that was impossible for anyone to accomplish. No one could take my pain away - no one. My pain was/is intimate and exclusive to me and only me - a mother's pain. It was something I had to absorb myself, and it continues to be that way now that she's gone.

"If only the people that love her and your family could each take a day, a week of the pain and sadness, we would, we truly would."

"I know there are hundreds out there just like me who have you in their thoughts also and who, like me, would take on as much of your grief as we could handle if it lessened your burden just a little."

Bless all of you for wanting so desperately to do so, and I'm thankful when you hold my hand, but the pain ultimately was/is mine.

I'm eternally grateful for all the acts of kindness from people in our community who cooked meals, dropped gift bags at the house, shoveled our snow, put up Christmas decorations, sent cards and emails... all in beautiful displays of love and support. As I said in a recent post, I have 700 emails in my inbox and several boxes of treasured letters from people. The written word is an exquisite gift. Use it as a means to bridge the gap that divides you from the one who is struggling.

My main point, after this RAMBLING (sorry!) glimpse into my personal reactions, is to follow the lead of your loved one. Respect their individual and unique reaction to their situation because cancer carries such an overwhelming assault that hits with physical and emotional ferocity, and the longer one is engaged with it, the deeper it goes. It creates so many layers of complexity that include both horror that breaks your heart to pieces and grace that astounds and nurtures your soul. As Erin's mother I WANTED and NEEDED to witness and soak in all of it first-hand.

Everyone has such good intentions, but try not to give in to your frustration by pushing your loved one to be someone they're not, just to fit into the mold of the way you think they should react. I can attest from experience that it will only make them uncomfortable, put their back against the wall and compound their stress level.

STAY in touch with them. Let them know you think about them, and KEEP LETTING THEM KNOW, even if they don't have the strength to respond. DON'T GO AWAY.

Gently suggest ways to spend short periods of time with them doing things you know they like ~ ie: I like to walk, bike, garden, do yoga, etc. Be creative and think of simple things that they don't have the wherewithal to instigate. If they say NO, don't be offended. Ask again another time, even if they say NO again.

One friend gave us a gift card to 7-11, knowing we liked Pepsi Slurpees. We used to stop for them on the way home from chemo, a refreshing treat after getting "unhooked" for the day. Simple - perfect.

If you know it's a tough day, show up with a milk shake, (or something else you know they like) hand it to them, hug them and then leave. They'll think of you and be grateful while they're sipping it.

Be an astute observer of their situation and see what smooths everything around them (mundane chores, shopping, mowing the lawn) and take initiative there so they can focus on their loved one instead of those distractions, because the most important place for them to be is at their side.

My extended family tree continues to grow ~ a diverse lineage with branches intermingling as we reach to one another for assurance and reinforcement. I continue to be grateful each day for the support that is showered upon me from those on the outside who do their best to understand the exception-to-the-rule life I lead, and appreciate the respect for my need to keep the personal roots of my own beliefs firmly planted in the ground to stabilize my soul.