The Beauty of The Survivor

Part One

My mom will say, if you live long enough, it’ll happen to you or to someone you know. It really doesn’t matter what “it” is – disease, divorce, death, loss of a child, suicide, job loss, tragedy. Live long enough and eventually these things will touch your world.

I know friends, mentors, parents of friends and childhood roll models who have been diagnosed with various cancers. Many fought the good fight and are now the picture of glowing health. Some fought just as good a fight and died.

The first time you hear something like this, it’s a shock. These things really happen to people I know and love? One of my closest childhood friends lost her father. He had a rare cancer. It was fast, fast and terrible. I found out he had been sick when I was invited to his memorial service. I was married, but really barely more than a kid myself. I remember crying and thinking, in my narcissistic way, “am I old enough that my peer’s parents are dying?”

I don’t want to seem casual about this, but today I’d have to stop and count to get an accurate tally of people I know who’ve passed away. It’s usually cancer. It’s no less terrible, of course, but it’s not as shocking, because now I know. Yes, these things really do happen to people I know and love.

My garden is covered in snow today. Six inches. There is life under that cold, white blanket, but it’s hard to see it as I stare out the window. There is beauty in that, in the quiet slow processes of life that continues on, despite winter. The beauty of the survivors.

My kale will spring back, perhaps a bit weather-beaten, but still sweet. The Brussels Sprouts will thaw out and shake off the snow and nothing will be lost. Other plants, more tender things like chard should come through, but you never know. The magenta and red and golden stems will be more vivid for the chill, if they make it.

I’m thinking a lot about challenges and survival and the unknown, in the garden and elsewhere. These last two weeks have been a bit stressful for me, personally. I went to my doctor to have a lump in my breast examined two Fridays ago. It was painful, but nothing – a clogged milk duct that resolved on its own a day after I got in to see my doctor.

They found something else, though. It wasn’t necessarily scary, but it was concerning enough and puzzling enough that my doctor ordered me back to her office the next Monday for a double biopsy. Four stitches, two in each biopsy location.

That was a long week, waiting to hear back from my doctor on the results. I was mostly fine until I read “biopsy not usually performed unless cancer is suspected” on Wikipedia. Then I spent a few minutes being not fine.

But I’ve never been a dramatic person, and the older I get the less tolerance I have for histrionic behavior, in myself or others. Life doesn’t stop because I have a little panic in the back of my mind. Kids still need lunch, chickens still need water. “Before fear, chop wood and carry water. After fear, chop wood and carry water,” to paraphrase the Zen saying about enlightenment.

Last Friday my doctor called me with the results of the biopsy. I was in the middle of volunteering at my daughter’s school, reading an educational story about musical pitch to a group of first and second graders. I only picked up the phone because it rang twice in quick succession.

Our conversation was rushed, as you might imagine. The kids were waiting, after all. I heard, “It’s not cancerous.” She told me she’d call in a prescription and that was it. I read the rest of the book in a kind of auto-pilot haze, trying to pull my focus back to the kids.

It’s not cancer, it’s all fine. It’s nothing…nothing to survive.

Not cancer is good.

The following Monday my doctor called me back. The particular brand of nothing that I have to contend with has a high co-occurrence with thyroid and auto-immune disfunction. She wanted to screen me, “just to be safe.” She had left orders for bloodwork at the front desk and wanted me to pop down and take care of that at some point during the week. Auto-immune disfunction. Well, I didn’t see that coming. But I’m getting ahead of myself, because of course it’s probably nothing. I feel fine. It’s certainly nothing.

Of course it’s probably nothing…it’s certainly nothing.

Part Two

I’ve been progressively more and more worried about my boy. His hands and feet turn blue and red and purple when he gets cold. I’m not talking about a little flush when he’s out playing for hours. No, his hands will turn bright red and look almost swollen. He also touches his hands and fingers in a way I’ve never seen before in a kid, like they bother him. Maybe they hurt or tingle?

Oliver is very active and very lean and so I have attributed his tendency towards cold extremities to his lack of baby fat. We’ve nudged the heater up, and up again, to try to keep him warm, but his hands stay chilled most of the time. So I was particularly careful to bundle him in triple layers when we went out to play in the snow on Tuesday, including wool mittens. After we came inside – it had been 15 minutes, maybe, and I’d held him the whole time - the tips of his fingers were a dark bruise-purple. The nail beds were cyanotic. They stayed that way for 20 minutes before progressing to red and finally normalizing.

My mom senses were screaming at me. I’ve felt that something wasn’t right with his hands for some time. Blue nail beds finally pushed me over the edge and I called his pediatrician. We had a long conversation and she told me there was no indication he had a macro-circulatory issue, like a heart problem, but that there was most likely a micro-circulatory issue happening. This might be something he could outgrow, but it might be something else.

She said there was a disorder called Raynaud’s Phenomenon which causes extremities to turn blue when exposed to cold, and recommended that I research it. If I wanted to pursue evaluation, I could talk to a Pediatric Rheumatologist at Children’s Hospital here in Seattle. I researched, we opened up the question “does my child have this?” and now we pretty much need to walk the path to find out the answer.

We are now in the long process of getting an appointment at the Rheumatology Department at Children’s Hospital. They are booked until mid-March. Raynaud’s Phenomenon, as far as I can gather, shows frequent co-occurrence with…wait for it…auto-immune disorders. But I’m getting ahead of myself, because of course it’s probably nothing.

Of course it’s probably nothing….but what if it is?

What if, what if, what if?

The garden is so quiet right now. It’s napping. My boy is napping too, upstairs with his daddy, and I bought quiet off my daughter by letting her play Angry Birds with the headphones in. So it’s me, and my quiet house, and my quiet garden and my loud thoughts. What if, what if, what if.

Before fear, chop wood and carry water. After fear, chop wood and carry water. And plan the garden.

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Comments

  1. Erica, I’m so sorry to hear you’re having to go through this, both for yourself, and for your little boy. I’ve seen friends go in for biopsies, and parents and coworkers go through chemotherapy and treatment for auto-immune diseases. None of it looks easy, or pretty, but I gather that having a support system, and catching it early, will make a world of difference. You’ll be in my thoughts.

    • Thanks Alice. Hopefully this is all nothing and there will be no reason for us to be in your thoughts except maybe, “Hey, When should I plant fall cabbage again?” type thoughts! :)

  2. All the “what ifs” that screamed in my head have never helped me prepare for the ones that became “OK, so I have to deal with this now what’s?”. It only sapped the strength I would need to deal with it. Make plans and do the things that are important to you. Read the extra story. If you can’t later, you won’t feel as guilty. If you can later, you didn’t loose anything. Distract yourself with good things. Planning a garden is one of the best. If the plans have to be modified, it has happened before and will in all probability happen again. Don’t let fear steal your joy.

  3. I’m sorry, Erica. Uncertainty over health issues sucks! It’s so hard to make the fear & anxiety go away. Talking about it as you are, and getting support from friends & family (and virtual friends) is at least comforting. I’ve seen our son Charlie through two surgeries in his nine years, and those were some of the scariest situations I’ve ever dealt with. When our kids are involved, it’s almost unbearable. If it makes you feel any better, our daughter had an extreme cold allergy when she was Oliver’s age, but she eventually outgrew it without us even noticing, probably by age 4 or 5. Hope that’s all it is for him.

    • Thanks Saskia, I’ll be rooting for cold allergy! I didn’t even know there was such a thing. Oliver had surgery at 6 months, and that is stressful, too. It’s hard to hand your baby over.

  4. I get in deep trouble for this with friends and family who don’t want to hear it, but I will risk saying so here. Thyroid trouble and “auto-immune” symptoms are up in the NW, along with things like nails falling out, hair loss, loose teeth, and nose bleeds. You may wish to Google “symptoms” with “low-level radiation exposure” and “Iodine 131″ as well as “Cesium.” If you find what you read convincing, consider reading a blog called “Fukushima Diary.”

    Hopefully it’s not true. But it is a thought that’s not getting a fair shake. We are right across the water from three meltdowns, and there’s nothing in the news, nor are almost any doctors making the connection. It’s hard to think about. My thyroids blew up. I decided maybe there was something in it and tried potassium iodide — shrunk right down. Coincidence, maybe.

    I have a beautiful garden, too.

    There, I spoke my mind. :(

  5. As a person with Raynaud’s syndrome I’m living proof you can have it without an auto-immune disease. So there is at least one person who can have one and not both!

    Honestly, as syndromes go it isn’t the worst, you’ll just find me with a lot of extra socks and gloves. If you have questions feel free to email me.

    I’ll be thinking about you. I’d rather have a thousand illnesses for myself than worry about one for my son. Try to remember, as best you can, that worry doesn’t fix anything in the mean time.

  6. Thanks guys. I just want everyone to know I’m not, like, in a puddle of hopelessness or anything. :) I know this all just potential maybe-possibly-kinda-bad stuff at this point. And it’s maybe not even that. Probably it really is nothing.
    It’s just felt like a bunch to sort through all at once. I didn’t mention this in the post because I was already going on and on, but the medication I’ve been given doesn’t seem like something I should be using while nursing. My doctor didn’t even mention this issue, but I have looked into it and I don’t care for what I’ve read regarding known and unstudied side effects for breastfed children. So….that means I have to either delay course of treatment, which isn’t the end of the world, I don’t think…or I have to fully wean my boy. He’s 16 months, so that’s plenty “old” to wean by most standards, but we just weren’t quite there yet. So there is that. It’s just another thing to weigh and evaluate. Anyway, writing down the situation, such as it is, was good for me. Thanks for listening. I’ll be back to some super bitchin’ garden planning tools next week, I promise!

    • Most conditions have a safe alternative treatment for breastfeeding. Your doctor should be able to prescribe something else. Don’t wean unless you get at least a couple professionals *who are supportive of breastfeeding* agree that its necessary. I have a friend with cancer who hasn’t weaned yet. My mom nursed my brother through surgery/anesthesia/etc for cancer, only skipping the day of surgery. If the absolute only options are unsafe for breastfeeding, you can usually “pump and dump” during the treatment and then continue with your nursing. Check out Kellymom.com for more information. And good luck!

    • I’m sorry to hear you’ve been dealing with medical worries, the uncertainty of everything can be so stressful to deal with. But you’re strong, positive and right– it is probably nothing. I’ve been going through something similar for close to 10 months now and spent an entire month waiting for biopsy results which I swear was just one of many long nervous breakdown periods. I’ve learned to “google” carefully, keep all of my medical records and keep my mind as distracted as possible with good things in life. My kids, friends, wine and plants all helped out in that department! If you ever need anything, let me know ..I’m not too far away :) Also I wanted to say I have several girlfriends with Raynauds and they aren’t too bothered by it, hell they even play contact sports.. they just need to wear extra socks and keep hand warmers handy.
      I’ll be thinking about you and looking forward to your bitchin garden planning tools post!

    • Hey – I want to encourage you to keep breastfeeding as long as possible, and to keep listening to that mommy voice inside of you.
      Hugs and thoughts and prayers your way. I know you’ve been concerned about this for a while. Good for you for listening to yourself. You can’t go wrong that way. <3

  7. Dance like nobody’s watching
    Love like you’ve never been hurt
    Garden like you’ll see the harvest
    Give thanks for your time in the dirt

  8. I can what if myself into a tizzy, so I know how you must be feeling! I wish you peace and health! It’s gotta be nothing.

  9. Stacy silva says:

    It’s the not knowing that is worse then the facts themselves. Deep breath, take care of the garden (and kids) meanwhile and the garden will help take care of you until you get your answers. Then you’ll have a firm footing to move forward.

  10. I will be hoping all is well. I love the way you express yourself, even in troubled times. I will be thinking of you and your little one. Kat

  11. Just want to say that I hope everything turns out just fine for you and Oliver.

  12. Erica,
    I’m so sorry you’re having to deal with this stress. I’ve noticed I’m more scared for myself now that I have kids depending on me. And so stressful to be waiting an appointment for your son…to have to worry about your baby is torture!
    Please be reassured that autoimmune problems are usually totally live-with-able. My grandma, mom, aunt, sister, brother, and I all have autoimmune thyroiditis (Hashimoto’s) and live totally normal healthy lives. Of all the problems to have, its one of the easiest and safest to treat. I remember us all kind of freaking out when my mom was diagnosed (the first in the family) but now its just one of those things about my family. It has never caused any severe problems for any of us. All the terrifying things you read about on Wikipedia are only if you have a severe case AND don’t treat the resulting hypothyroidism.
    My sister has really bad Raynaud’s but all it means is that she has to wear warm socks and gloves in cold weather and that we have a really fun party trick–we put ice in spots on her feet and she comes out in blue polka dots on a purple backdrop. ;-)
    Take care of yourself and mix in a few bubble baths and pamper sessions with the chopping wood and hauling water!
    Robin

  13. My god Erica…I’m so sorry to hear of all you and your family’s health-related stress :( Stay strong!

  14. dixiebelle says:

    Oh shit. I don’t know what to say, other than I will be thinking about you guys, hoping you get results & apt’s quickly, and hoping even more that you get good results…

  15. I just wanted to say one thing “stay positive” and don’t worry about the unknown. Thinking of you and sending good vibes ……….from a mom to a mom

  16. Oh my dear… Our children… it’s painful and scary when it’s our kids. My 19 year old stepson was diagnosed with a serious auto-immune rheumatoid disorder last year. He’s in chronic pain. He’s also in total cut-off from his father & me. It took me a month to realize that he’s in his late teens, the major & appropriate individuation era, and more than that, he’s coping with a diagnosis of a progressive illness that he needs to manage. For the rest of his life.

    It’s a whole hellavu lot easier to be really angry at us than at his body or his disease… he knows we won’t let him down, and will love him no matter what. He may be 30 before he realizes he knows this! I want to protect him, and I cannot. He doesn’t even want me to text him. His Solstice gifts are still here, wrapped. He is becoming an adult, slowly, as his frontal cortex mylinates, a process that is complete by age 25. Of course, he’s managing to disrupt the process with all manner of drugs~ nicotine, marijuana, alcohol, who knows what else? He’s doing the best he can to manage all his pains. I cannot help him except psychically, at a distance, to continue to send love waves out to him… and pay his health insurance premium.

    Bless him. Bless all our children. Big, big hugs to you. Love is what we have for our babies, up close or far away.

  17. I left you my comment on Facebook. But I’ll leave one here too because I enjoy your blog & tips so much. Thank you for opening up & sharing this with us. You will be supported out here, by people you’ve never truly met because we too understand – chop wood, carry water – and do the best we can while trying to keep the anxiety at bay.
    Much love to all your family!

  18. Oh and give that little guy a hug from me! He’s so cute :)

  19. Sorry to hear that you’re going through so many “what if’s” at once. It must be mentally and physically draining. Sending good vibes out to you and your little one and hope you can continue “hauling water & chopping wood”.
    Hugs.

  20. First, this was a beautifully crafted post, nicely done.

    Second, I know the what ifs. I have a bladder auto-immune type disorder, and it took an agonizing three months to diagnose. I lost 15 pounds in that time, just from stress. You sound to me like you know what to do to keep it in perspective, and my guess is putting it out there and writing it down helped, at least momentarily, quiet those what ifs.

  21. Hey, we should get together and have a beer soon. I probably didn’t tell you when you came to hang out with the youths, but I have auto-immune disease and went through a pretty thorough diagnosis process last winter trying to figure it all out. I’d be happy to do a brain dump for you of what it was like for me. It’s not the end of the world, by any means, but it did require a pretty serious brain shift for me, and I spent some time freaking the hell out. Even if your nothing is nothing, it might be helpful to hear what it was like to figure out what my something is.

  22. Erica,
    Thanks for sharing so beautifully what you have been going through. I have to echo that worrying is useless, as we always worry about the wrong things. :-)
    Just know that you have quite a community of folks that care about you and your family across the country who have come to know you through this blog. It is a beautiful thing that you do.
    I have never commented before, but I ‘lurk’ regularly. I appreciate your voice and love hearing about your garden, your family and your other thoughts.
    Peace, Anna from NH

  23. You are strong and sensible and allowed to hear the What-ifs! I just wanted to say that I’m sorry, and I’m sending good thoughts your way. My cousin has Raynaud’s. She’s a tom-boy and plays soccer, works as a Lifegaurd and nanny. She’s living and loving life, but with gloves and long sleeves:)

    As for the radiation comment above, I don’t know what’s what. But, I have noticed my hair loss increase a few months back, and from time to time make a kelp mung bean soup. I always feel better afterward (kelp is rich in iodine). Some traditional Asian restaurants include it in their Miso soups too.

    Anyway, you have the remarkable ability to share some beauty amid personal chaos. For that, I thank you.

  24. One of the things about the rhythm of life is that it continues its gentle drumming whether we are in step with the drumbeat or crying on the sidelines…..Being a mother does dull that self focus and shift our alert towards our children’s needs in a way you can never imagine before they bless our lives.
    Cold winter snow outside with life quietly pulsing beneath is a paradigm for where you are right now Erica.
    Be strong but also allow yourself to be cared for-planning and domestic distraction is uplifting but so too is snugging down with a hot cuppa and those you love. Quiet contemplation and loud protest are just as valid therapy for ‘waiting’. Take heart friend, Spring is never too far away.

  25. Thanks for sharing Erica. You seem like you’ve got your priorities in order and with your strong spirit will carry on. I’ve been reading other reader’s comments and would just add that I’ve known more women come down with some-type of auto-immune disease in the past year than ever, including myself. Hashimoto’s thyroid and weird cysts on my thyroid which, thankfully were this past week declared non-cancerous.
    I’m going to be repeating your zen mantra, I like it. After the snow and ice melt, it will be time to get back to thinking about the garden and that gives me great peace. Cheers, Jenni

  26. Thank you all for your kind words. I would like to respond to everyone individually, but the is that water to carry right now, as you all understand…but please do know that I value so much the support of my friends and readers here.

    I do want to pass on a resource I found for nursing moms who aren’t sure about medications they’ve been prescribed. My own doctor was not able to satisfactorily speak to my concerns, but I was found this resource and it was very helpful to me. It’s the forums run by Dr. T.W. Hale, R.Ph., Ph.D., Professor of Pediatrics and Pharmacology, Director of the InfantRisk Center at Texas Tech University and author of “Medications and Mothers’ Milk: A Manual of Lactational Pharmacology.”

    The forums are found at:
    http://neonatal.ttuhsc.edu/cgi-bin/discus/discus.cgi?pg=topics&access=guest (searchable archives)
    and
    http://www.infantrisk.com/forum/forum.php (active forum)

    The Infant Risk Center’s main site at Texas Tech University’s Health Science’s Center is located at: http://www.infantrisk.com/content/webforum

    This is an excellent resource for moms who have specific questions about medication and breastfeeding safety, and I’d encourage every mom I know to just tuck this one away in the back of her head (or browser’s bookmark folder) for the time when she or a friend might need some answers.

    Thanks again. Should there be anything else to share, I’ll update you. In the meantime, thank you for listening here.

  27. My thoughts and prayers are with you guys for good results from the doctor. It’s ok to be afraid, and to be strong, and to kick pillows, and snuggle babies. All reactions are normal and expected. May the doctors find the answers you need and for those answers point to easy solutions.

  28. Erica, I read this post on my iPhone while our power was out down here South of Seattle, and I really didn’t want to fumble-finger the response by trying to type in those tiny letters with my fat fingers.

    Anyway, my very first thought when I read about your son’s problems was Reynaud’s! I knew a woman who had it, she seemed to cope ok. Still, it must be very stressful to know something is wrong and not know just what. I would have freaked out over blue fingernail beds. I am hoping for the very best for both you and your son. Remember, being user-written, Wikipedia is very much NOT a font of truthful information.

  29. Sharing these bits is an act of bravery. It’s also an act of community. That is how we manage to keep walking when the weight of things bear us down.

    Much luck in the coming months as you and your family walk this path.

  30. tornadogrrrl says:

    Sending supportive thoughts your direction.

  31. I’m sorry you are going through this, and I know what it’s like, believe me. I wanted to point out that your son’s symptoms sound so much like mine. I have a condition called Reynaud’s Syndrome where I experience the very same symptoms. I have Celiac, and the Dr. told me that these two sometimes group together. I live on a loose Paleo plan, and it seems to help. So sorry that he, and you, are troubled.

  32. Like some of the other, I first thought of Reynald’s when I read a more recent post that mentioned your little one having blue hands. I have it myself, and other than making sure I wear gloves or mittens when it’s cold, it’s not a big deal. If I am going to be out in the cold for a while, I do make sure I have on warm socks too. In the summer, it can be a neat party trick to have cold finger tips on a 90 degree day without playing with ice. If it turns out to be Reynald’s , get your little one some warm,soft mittens to wear whenever his hands start to turn color. If you watch them, you might see them change to red or white before turning blue. Mittens should be easier for him to get on than gloves.

  33. ShellsBells says:

    Hiya,

    A: I realize this is an old post, so you may have posted results already and I just haven’t gotten there yet, but I am commenting anyway.
    B: I’m new here, so HI!

    My partner has Reynaud’s and just like I saw someone else posted, it’s really almost a non-issue…she carries gloves around with her, wears socks around the house and is mindful of her environment in a way that many of us aren’t and that’s pretty much the end of it. (In the light of fill disclosure, she does have an auto-immune condition as well.)

  34. Mollee Noren says:

    Erica, did you ever get a diagnosis for your son? My daughter (19 months) has been having the same thing happen to her hands and googling for information brought me here. This is the only place I have found a photo and description that sounds identical. Any additional info you found out would be so very appreciated.

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