From Caregiver to Patient

For 2018 Kathleen and I had decided that the ModeKnit Yarn calendar should be really crammed.

It seemed like a good idea at the time; try out a bunch of new shows (Iowa, Yarn Con, Houston) and stick to some old favorites.

Our schedule included The Michigan Fiber Fest (Aug), Wisconsin Sheep & Wool Fest (Sept), North Country Fiber Fair in South Dakota (Sept), an October meeting of the Minnesota Knitting Guild in St. Paul, SAFF in North Carolina (Oct) and back to Minneapolis for VK Live (Nov)  Kathleen and I bit off a LOT of travel for late Summer.

However, I’m facing the reality that this will not be happening for me.

Disappointing is way too shallow of a word for the deep, deep well of sorrow I inhabit.

I live for these shows.  I love seeing our customers, our friends, our reward for the hours of hard work I put in alone, the extrovert yang to my introvert yin side.

I had figured that after Houston Kathleen and I would have about 6 weeks to prepare for the second half of the Summer.  And I was obviously still in denial that there was something remotely serious going on with my health, even with all of the warning signs I’d been feeling since April, or even as far back as last October.

So I figured that I had the entire month of July to rest and ready myself and dye a bunch of yarn for upcoming shows.

Little did I know that instead of resting, I’d be writhing.  Because, Cancer.

Plum Jasper

Allow me explain using the language of color and dyeing that’s become my lexicon for the past 5 years.

MY BACK
is split, literally, into pieces and my spine is cracking with a large tumor that was growing free and unstopped within the T10 vertebra; it’s a dark red pain, rich and full and velvet, but also lumpy with extra bits of unground pure pigment.  Thick, viscous pain.

Carol Peletier

MY CHEST
and underarm area is permeated with lymph nodes, swelling and soft and tenderly painful, individual lumps of light, pale, soft, half-cooked dough with a peppering of dark grey.  There’s a bright garlic sting, a shine of neon-yellow, in the center of each swelling and, if bothered, they explode into eruptions of glowing torment.

Rose Quartz

MY NECK
has a gaggle of tiny sarcoma floating around in the back, each one acting as a teensy sound amplifier. 

When a high pitched voice, the squeal of hospital cart tires on linoleum, a wailing oxygen sensor alarm breaks the silence by my bed, these rock hard little jewels light up and send that sound directly into the top of my skull, spine and jaw as an exquisite, thin, light pink flush of opal misery.

These three separate areas of metastasis were what alerted my docs that I do, indeed have cancer.  A needle biopsy under my right arm on Tuesday, into one of those tender little gnocchi of suffering along my chest, was what was required to determine origin.

The source of the cancer is one of the most important pieces of the puzzle.  It felt as though I spent most of Tuesday, Wed & all of Thursday swaddled in the fallopian tube of an MRI machine, wrapped in warm white blankets with earphones and a contrast drip while they searched through my organs and bones for some sign to tell them more about my “Cancer of an Unknown Primary”

The waiting period for that diagnosis was wretched.  My biggest fear was that the culprit would be a solid mass tumor in a yet uncharted organ.  Liver, I thought, would be worst.  Colon not so great, either.  As each organ was observed, photographically sliced and metaphorically grilled (with a fava beans and a nice chianti) and rejected as the Primary, I sighed with relief, tapping my foot, waiting for the biopsy results.

FInally, late on Friday the initial diagnosis revealed:

Diffuse large B-Cell Lymphoma, Stage 4

It’s a very violet diagnosis, don’t you think? It’s only initial, but it’s oh-so-HOEPEFUL!

Nuke Me ‘Til I Glow / Let me Rest so Health will GROW
I will NOT be doing any dyeing in the near future.
(And, if I have anything to do with it, I won’t be doing any DYING anytime soon, either!)

And I won’t be visiting any yarn shows or fiber fests, and I will not be teaching any time in the near future.  Not only will I NOT have the energy or physical ability, but I need to dramatically reduce my association with the masses because my immune system will be shot.

Aside from the physical barriers I’m dealing with right now, I can already feel my sense of humanity —Self?— draining away. After only one week of radiation I am tired, foggy, absolutely exhausted and confused.  Of course, that confusion is also due in part to the to the head spinning rapidity of the events of this week and the liberal use of opioids which allow me to successfully pretend there’s not a gigantic tumor sticking out of my back.

TREAT THIS, MF’er!
So here’s an outline of the plan of my treatment, as it stands, and it will change.  These things are never carved in stone.

The first, most immediate step was to immobilize my back so that the tumor that was causing the cracked vertebra wouldn’t create more damage, and so that I wouldn’t bend over in some odd way and cause ‘catastrophic damage’ to the spinal cord.

Death Star Valkyrie

A huge, white back brace was built for me in a day, and allow me to tell you that IT IS STUNNING.

Like a Valkyrie rising high above the stage in the incomparable Death Star Production of The Ring Cycle, I glide through the hallways of St. John’s Hospital in Maplewood, MN like a slowly moving diva.

Or, this halloween I’ll make Gerry a wiffle bat costume, and we’ll be a matched set.

For the past week I’ve been undergoing radiation to shrink the tumor on my spine.  This will continue for another week and a half, and at that point they’ll assess the situation to see how successful it’s been.

Victorian Valkyrie

After a short break for some more testing (Spinal Tap, anyone?) and to let the radiation “settle” I will begin a course of chemo therapy to work on the lymphoma.  All while wearing this spectacular brace. How could a girl get any luckier?

Gerry realizes he already IS one lucky guy because he snapped me up (and got that $5 ring on my finger!) 25 years ago this Aug 21.  We are lucky we met, and lucky we’re still here together.

Hell, I’m damned lucky that last Sunday, before I entered the hospital,  I tried to manually raise the garage door on my own.  It could have gone very wrong, I could have snapped my spinal cord.  Literally,

I am VERY LUCKY.  Ever since we fought against, and found peace with, Multiple Myeloma in Gerry’s 12 rounds (and counting) we’ve considered ourselves one of the luckiest families on the planet.  That luck holds.  The good news is I only have to wear the brace when I’m walking for any distance or up and down stairs.  And for Sunday and Wednesday matinees.

The chemo will be tweaked to determine how often I need it, how much I need, how much I can take and all those other mysteries of medicine.  And I guess after that I just keep doing what they want me to do.  And, most important, I think I get to go home today.  It’s been a week, I’m ready.

They told me to expect my port to be in for about a year, chemo could run shorter or longer than that, there are still SO many unknowns that making any kind of guess about duration and depth of treatment would be a fool’s game.

I am terrified, but I am ready.

82 thoughts on “From Caregiver to Patient

  1. Annie, my dad had the exact same type of lymphoma. With the help of a great medical team that designed his plan and administered his chemo, he kicked its ass. I believe you will, too. Yeah, the chemo does suck, but this can be a curable cancer.

    You and your family are in my thoughts. I wish strength and resilience to all.

  2. Larry’s been dealing with B cell, too. It sucks, but it’s one of the most treatable of cancers, with a very high cure rate. If you ever need an ear, feel free to holler at me. (((HUGS)))

  3. Hi Annie,
    I think you know me from some years ago when we met at your book signing. At that time I told you I had chronic lymphocytic leukemia (B Cell, RAI Stage II). It went untreated for 24 years and this year reared it’s ugly head. Right now I have 221,000 white cells actively swimming around in my blood. I’m on an oral chemotherapy that costs more per month than my annual Social Security Check.

    I’m telling you all of this because you are my hero. You have given so much to the Metropolitan Community, you have faced Gerry’s myeloma with determination and grit. I admire your chutzpah and grace. Baby, you can do this.

    I’m a Certified Healing Touch Practitioner and I’ve worked with cancer patients, in hospital and after chemo and/or radiation. I’ve also done pre-op and post-op Healing Touch. I’m not touting a cure, by any means, but their is research that shows it can support you through your marathon ahead. If you need my assistance, email me. Otherwise you’re in my prayers and healing light. Blessings, alice

  4. Dear Annie — I am completely blown away by this terrible and terrifying news! I’m crying for you and (i hope) with you. Crying is very under-rated as a curative. It’s actually quite healing. Your news is at once terrifying and uplifting. There are times in life when I wished I could pray, but I’m not a believer. So I’m focusing my energies and sending them to you. I wish I could hug you, too. I’ll be watching for your news. Heal well, my friend.

  5. Oh my sweet Annie know I am keeping you in my thoughts. I know this is a very frightening journey in your life but don’t forget to pick up those needles and let the project carry away your worries.

    Lots of love!

    Hugs!
    Cat

  6. Much love and best wishes. My sis had a tumor destroying a vertebra. She had to have surgery to stabilize her spine. Hers is lung cancer. She’s hanging in so far.

    Cancer sucks. Wishing you all the best.

  7. The folks at North Country Fiber Fair will be thinking of you and sending good thoughts and light for healing. We will miss you in September.

  8. I wish your writing wasn’t so beautiful. I don’t want to smile and enjoy it because the reason for your essay is awful. But you’re a professional, so I’m guessing you’ll traverse this road with grace, humor and equanimity.

  9. Well damn, Annie. Your family has already had more than its share of fighting cancer. I’m sorry you and the family have to go through this.

  10. I audibly gasped when I read this. I don’t know what to say except I will keep you and your family in my thoughts and prayers. I have 2 friends who had stage 4 lymphoma. One is 17 years in remission. The other had a stem cell transplant in January 2017 and looks and feels amazing. Both are knitters. Just putting it out there. Please let us, your knitting fans, know how we can help you.
    Humor? Cyber chicken soup? Is there such a thing?
    I thought you looked like a ninja turtle in your back brace. Peace.

  11. I so feel that tell us your current reality is helping you, but it’s helping us, too. Your news is the 2d I’ve had today – so similar. You are not alone. You are never alone.

  12. You are one of the strongest people I know. You always have been. I’m glad to know you are surrounded be folks who will contribute their strength to yours. I wish you successful treatment and minimum negative side-effects. Both for Wednesday and Sunday matinées.

  13. So sorry to hear of your diagnosis. From one survivor to another hang in there and keep your sense of humor. BTW when you get to chemo try drinking a slurpee as the strong stuff goes in, saves your taste buds.

  14. Oh, Annie. Loving the Valkyrie look on you. I’m so sorry to hear the news- bodies are inconvenient- but I’m thinking of you and, of course, rooting for you.

  15. Just thinking how poorly your beloved bike riding had been going. Now it all makes sense. You are one determined person. You will be in my thoughts as will the rest of your gang.

  16. Oh dear Annie. I know you only through my years of knitting and reading your posts and such. I’m so glad that you have a diagnosis because now your docs know the weapons they need to help you. Please take special extra super good care of yourself. Be sure to tell people with colds to stay the hell away from you. Your wonderful black humor will keep you sane and I hope to see regular updates with many colorful metaphors. I don’t believe in prayer, but if you do I hope that those who do pray for you will pray hard and fast.

  17. You’ve got this. Proud of you and your magical use of words to tell this story.
    This is just a chapter– not your whole book.
    Give ’em hell, Sweetie.

  18. I’ve been following your career and life since I discovered you when I first learned to knit years ago. I’m so sorry this is happening to you.

  19. Oh, I am so, so sorry to hear this. Wishing you all the best in your treatment and recovery.

    In times of stress when I haven’t been able to knit, I have found that simply holding some lovely yarn was oddly comforting.

  20. Glad to see you are maintaining your humor and refusing to be TOO down. I will be thinking of you and hoping for a good outcome. Hang in there.

  21. I was thinking about you last night. With the SAFF show on the horizon, I hoped you would accept an invitation to stay with me to save a few $$. I realize you only know me from FB (Lemma), but we might have a riot together. But now,this is gettng personal! I did meet you a few years back at a meeting of the Rochester (NY) Knitting Guild. I was the greenest of knitters and took courage hearing your story about your first sweater. I have not risen to the stratosphere in your wake, but I have had the girl-balls to buy loads of yarn, even some expensive stuff, just not the cajones to use it. That is going to change because nobody knows what the future holds.

    Nobody has spun a yarn (either kind) as well as you. If that Minnesota lake didn’t gobble you up, this won’t either. Every day is precious and I have a feeling you will look back on this in 2019 and see it as a bump in the road. Lots of love to your and your family.

  22. Stay strong. You have been hit with a ton of info and lots to think about. I think you need to decorate that brace. We will all be out there in the world pulling for you and your husband. Know that lots of us are thinking and praying and sending you energy.

  23. Wow… Thank goodness you have a diagnosis, thank goodness that you didn’t damage your spinal column, thank goodness you have a course of treatment. I send healing white light your way, healing energy and strength during your radiation and chemo and frankly, I believe you should decorate the hell out of your white turtle chest (and back?). Blessings Annie.

  24. Oh Annie,
    I am so sorry to hear of this. May your recovery be swift and complete!
    Sending only the most positive energy and strong belief in your conquering this !

  25. Oh Annie! Usually when you’re feeling the way you have been the past few months, it’s just a fibro flare-up. So glad you got to the hospital to get checked out! Now you have a diagnosis and a plan, so you can fight this…you know you can! You didn’t fight through everything with Gerry to give in. We are all here fighting alongside you and sending you all sorts of healing energy. Stay strong and get through this in your inimitable way.
    Hugs, Susan

  26. Blown away reading all this dear friend in my head. Wishing you the speediest of recoveries with the least discomfort. You have many in your corner praying for you.

  27. Holy cow. Annie, I think of you fondly and often and this time, I will be thinking healing thoughts in your direction. And I have got to say…no wonder why you weren’t feeling well! Ugh.

    Also, and more importantly…a big thank you, because you were one of the people who had hope and faith that things in the fertility department would work out for me long ago, and you know, it did. I spent today spinning on a spindle in the front yard while my SEVEN year old twins splashed around in the kiddie pool. (Can you believe that? I had twins! They are seven!)

    Your hope and faith buoyed me along back then. I hope I can do the same for you, even a little bit. Sending you hope for a refuah shlemah, white light, and whatever in modern medical science will fix this thing. Wishing you every good and healing thing, and a lot of funny jokes about that weirdo costume. 🙂

  28. Persistent and I are pulling for you. My 16 YO nephew is wrapping up his initial rounds of chemo for Hodgkin’s lymphoma. This is beatable.

  29. Annie,

    Only you could make me smile through the tears as I read your post.
    I’m so very sorry you’re going through this.

    My daughter had a spinal tumor and had radiation and it significantly shrunk it.
    The tumor ate away part of her spine and rods and pins are now holding everything in place.

    Sending you every good thought and wishes for healing and recovery.
    You gonna kick cancer’s ass. I know you will!

  30. Annie, we met years ago at Lisa’s yarn shop in Vancouver WA. Wine, cheese, and Annie! I have loved following you since and am knitting a baby sweater with your yarn as I read this. I just want to join the chorus of folks sending some good thoughts and healing vibes your way. This online community is here for you when you need us!

  31. My very best wishes to you. I had a breast cancer diagnosis in ‘94 and all went well but I never got over it spiritually. Although you are very brave, I know that you have deeper thoughts too but it will all go just fine. Enjoy your life; you will have a long one!

  32. Dear Annie- Geez. I met you when you came to the North Coast Knitters Guild in San Diego. I just liked you so much. When Multiple Myloma came for Gerry, you were a warrior woman. You have been a battle hardy woman for many years.

    New battlefield, New victories. No dyeing and definitely no dying! It’s all about you. You have raised great kids and you are brilliant. The creativity of the words used to unpack this news is a reflection of your strength and beauty. Healing prayers and love to carry you.

  33. Huge Hug! When I get to heaven I am going to have a talk with the person who was in charge of God’s appointment making. I think they got your plate confused with someone else’s. You have way too much on your plate right now. How are you going to hold that with a bad back?
    Oh wait! You have us! You let us know when you need help and we will step up and help you!
    Don’t hold back, when you need help ASK

  34. You are in my heart. I come to see you in Colorado because you have such joyful classes whatever we are doing. (I’m the dog who follows you on twitter)

  35. You are truly an amazing person. I know you have a battle ahead of you, but you have never given up on Gerry and I know you will fight with everything you have to get through this. My grandson fought stage 4 Hodgkins Lymphonal last year and is returning to his Junior year of college next month. You have so many people pulling for you and I’m one of your biggest fans. Meeting you all those years ago at Knit-a-Bit was a hoot. I’m counting on that tenacity to get you through this. Sending you hugs and love.

  36. Oh Annie. I’m so sad that you of all people are experiencing this battle. Your delightful attitude and humor shine through the years since I met you. I had an extended battle with breast cancer in 1990..surgery and a year of chemo. And I’m still here. Be kind to yourself. Hugs, Crow…

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