Fluff-Fluff: A reminder to be grateful

My most recent at St. Jude was not what I expected. I thought it would be completely routine and that my follow-up kidney function tests would be normal. Neither of those things were the case.

For starters, I was given big news from my oncologist. Because I have gone five years past the end of chemo with no relapses, I have been referred to another doctor at St. Jude- one who specializes in the care of long term survivors. For a cancer survivor, 5 years with no recurrence is incredibly promising, so this was great news. But it was so bittersweet. My doctor and I will still be in touch (he will be a big part of my wedding), but not having appointments with him will be a difficult transition. I am so lucky to have him in my life, and I am so lucky that I don’t need him to treat my cancer anymore.

Then the kidney news came back. Without being too scientific and medical (which is harder and harder to avoid these days), my GFR (glomerular filtration rate), which determines the rate at which the kidneys filter and clean the blood, is nearly half of what it was when I finished chemo in 2011. We don’t know the exact reasons for this, but the chemo made my kidneys more susceptible to injury, and combination of the antibiotics I took for a year after that and my chronic use of NSAIDs for the occasional headache likely contributed to the damage. It ls likely my kidneys are stable and won’t continue to change (we hope this is the case), but I will be seeing a nephrologist at Mayo (one of my teachers) regularly just to keep an eye on things.

As I so often do as a patient, I fell into the trap of feeling sorry for myself after getting this news. It is true that I am afraid- what if my kidneys keep declining- will I one day need a kidney transplant? It is possible. The biggest disappointment, though, was realizing that even though my cancer is really actually gone forever, I will continue to suffer the long term consequences of the drugs that cured me. I am infertile and have chronic constipation, and thought that was it. I thought i was in the clear. But now with the newly onset kidney issues, I realize that there very well may be problems that pop up in the  future in regards to my health and the drugs I received in the past.

No, it’s not fair.

But then remembered that nothing is. Or ever was. Or ever will be. It’s not fair that I got cancer, but it’s also not fair that I survived mine. And it’s not fair that mine was in my leg, when many children have cancer in much more devastating places.

While at St. Jude this trip, I saw a little girl in the hallway, walking along with some incoordination and carrying a giant panda bear stuffed animal that was about her size. The panda had a blanket wrapped around it and gauze wrapped around its arm, as if it too had given blood that day. I cannot see a child without wanting to speak to him or her- that is my curse (or my gift). I stopped walking and said, “Does your panda have a blankey? I have a blanket too!” (this is not a lie).

The little girl stared at me blankly through her thick glasses, assessing me. I assumed she was not in the mood to make friends and began to walk away. Then I heard her talk:

“His name is Fluff-Fluff,” she said. I turned around and she had followed me down the hall. I spent the next fifteen minutes talking to this 5-year-old, whom I learned was named Emalinn. Her mother told us that she had a recurrent optic glioma (a brain tumor interfering with her optic nerve and causing her to have vision loss). She was receiving radiation, but she had already received chemo before. I told them I was in medical school to be a doctor, and Emalinn said she wanted to be a zookeeper and save baby animals. She melted our hearts. As we say our goodbyes, Emalinn whispered in her mother’s ear. Her mom said she had requested a “play-date” with me.

I feel so lucky, so blessed, and so grateful to have met Emalinn. She reminded me just how minor my cancer-related deficits are. And she reminded me that joy is ours for the taking no matter how hard life gets.

I have decided not to live in fear of kidney failure, just as I do not live in fear of relapse. We are only given today, no matter who we are.

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3 thoughts on “Fluff-Fluff: A reminder to be grateful

  1. “No, it’s not fair. But then I remembered that nothing ever is. Or was. Or ever will be.” – Beautiful line. That is relinquishment that opens the door for gratitude and beauty and giving and receiving gifts. Mercy isn’t fair either, but we receive it anew every day. Thank you for this beautiful post.

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