Catepillars and Butterflies


Rich’s first morning waking up at home post-SCT in his cocoon

My mother-in-law loved butterflies. She always had any number of shirts with butterflies on them. Once she told me how she loved the transformative symbolism of their life cycle. How something so plain could turn into something so, as she would pronounce it in her Queens accent “beeyoooteeeful!”

Does the caterpillar have difficulty with these changes? Does it accept the metamorphosis with grace? Does it have faith that the transformation will go as planned? That, upon going into the chrysalis, it will emerge as a lovely monarch? Perhaps these are the lessons of acceptance, grace and faith that we have to learn from these visitors to our garden. This time of year is when the monarchs are finding their way back south to Mexico. They stop by our pond to drink and feed at the fading blooms so their lessons are visible to us.

The nurses had teased Rich about being swaddled in blankets while there… that he was in his cocoon ready to emerge as a butterfly. We emerged from our cocoon of the NSUH BMT Unit one week ago today. We‘ve transformed our reality. A butterfly can’t go back into its cocoon so it is always, for us, necessary to keep moving forward into this new reality.

In some ways, the pre-transplant chemo cycles have prepared Rich for the fatigue, off flavors, and other side effects of the transplant. In reading other people’s blogs on what to expect, this comes as a relief… it seems it’s more of a shock if you go into the transplant without previous therapies. It is not so different from what we had experienced before so lives in the familiar realm. The biggest difference comes from a month of minimal exercise. The three stairs up to our front door first left Rich’s legs like jelly. Now, as he walks twenty minute laps again and again throughout the day, taking the few steps down into the porch and back up again, the jelly is going away.

Kepivance, a medication given before and after the transplant to help keep mouth sores away, has done its job but coats the taste buds. Eating strong flavors is preferred as they cut through the I-haven’t-brushed-my-teeth feeling. Little by little, hunger is coming back. Our new reality is becoming remarkably like our old.

Our meeting with our stem cell team this past week has shown that Rich’s counts are on a constant rise and no transfusions or infusions or injections are needed. Weekly meetings will, as time go by, change to twice then once a month. Restrictions will, little by little, fall by the wayside. For now they remain. But we welcome our friends and family who visit and rejoice in taking an occasional trip outside.

We’re still in the full restriction phase but after the hospital, it’s not as restrictive as you would imagine. Rich’s activity level matches his energy level… as long as that balance stays, boredom will not come knocking.

After a butterfly emerges from his chrysalis, there is a period of time where its wings are soft and folded from being in the cocoon. It rests from its work and then, when it is ready, it pumps blood into its wings which gives them strength so it can fly. That’s the part of the metamorphosis we’re in now… wings waiting for their strength. Soon enough…. Within seventy-five days, Rich will be able to spread his wings.

Antoine de Saint-Expuery’s Little Prince said “Well, I must endure the presence of a few caterpillars if I wish to become acquainted with the butterflies.” We’ve endured the catepillars… now we wait to fly.

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