I’m Sorry..?

Being Sick Sucks.
I’m about to complain about folks being NICE to me. How bitchy does that make me, huh?

I will admit to being the kind of woman who DOES like a bit of the old, “How’re you feeling, Sweetie?” commiseration.

The Bruises Of my IVs

I like sharing with folks what’s up, and hearing their own ailments, and maybe both of us saying something to each other that makes us laugh and feel more okay with being under the weather. I like that kind of human interaction, and I’m not ashamed to say it.

I’m not a stoic. I am not brave. I am terrified of pain, I can be a child, and I’d rather be on my bike any day of the week than get a blood draw. It’s lovely that folks call me brave and stuff, but the truth is, I’m kind of tap dancing through this, I tend to be a funny person, but because I’m cracking jokes doesn’t make me ANY BRAVER than the guy next to me who’s doing this thing more quietly. I’m simply trying to be true to myself.

But here I am. As sick as I’ve ever been, even though I keep forgetting that and doing stupid things like getting up from my chair too quickly. And although it’s just been 2+ weeks, I feel as though I’m falling into a rhythm that might sustain me for a time during my recovery.

Because RECOVER is what I fully intend to do.

I’m not sure that I’m up to BEATING, FIGHTING, KILLING, or CRUSHING the Cancer. I just want to recover. Please.

At the same time, on a daily basis, because of my oddball way of dealing with my illness, it seems that I am disappointing SOMEONE involved in my recovery — sometimes only obliquely as a well wisher on FaceBook — but I ALWAYS seem to be a disappointment.

I am 100% certain that this feeling of being a disappointment is within myself, that I am picking up cues from folks they’re not putting out, I know I can do this, and the pain and fear that have joined me on this journey tend of screw up my ability to ‘read folks’ well.

An Example
Every day for the past 2 weeks I’ve had a radiation treatment.

With Gerry’s cancer, there was no large tumor, so radiation wasn’t one of his therapies. This is the FIRST time I’ve come into contact with a radiation laser, or with my own bizarre side effects involved in this therapy. Hot mouth, dry mouth, hot head, confusion and TOTAL EXHAUSTION.

Just.
Complete.
Absolute.
Inability.
To.
Get.
Up.
And.
Pee.

Which is a hell of a thing to admit in a blog, but there you have it. Perhaps someone, somewhere will find this titillating and might leave our country alone for a few hours?

Pills are pretty

When I get my radiation treatment, I hobble into the room with my walker (actually, Gerry’s walker from 12 years ago, and BABY and I glad we didn’t get rid of it!) then I slip off my robe and use a step stool to sit on the table.

The two technicians, in concert, lift my legs up onto a piece of foam to keep them in place and make me more comfortable. Then, on either side of me, each one takes an arm and they lower me into the correct position. I have sharpie on my chest that they use to anchor the laser, and I hold my arms over my head, grabbing a few plastic dowels, to help my body align in the way it needs for the laser to hit the tumor correctly.

The techs have the ability to take xrays as they work, sort of functioning pictures that help them determine that they’re exactly where they need to be.

Once I’m ‘locked in’ they start the procedure, and the laser arm slowly moves all around the table, sometimes the table moves slightly, and in about 15 minutes I have as much radiation as I can stand and it’s time to go. This is generally when my mouth is so hot I swear I could cook a marshmallow by just blowing on it.

The Radiation Table, which looks like a bistro in Chelsea.

A few days ago—a rough day—when I had a doctor’s appt and I was still on DOUBLE Dexemethesone (which tends to make me a hyper, slightly crazed, emotional mess.) I had one of my treatments that got a little emotional.

So there I was, Little Miss Messy Dexemethesone McMessy, strolling into my treatment, sitting on the table, and one of the techs reached her arm over and tried to bring ONE of my legs up onto the foam.

Because of the placement of the tumor, both legs must be moved together, to move them individually is very painful. Also, I just don’t have the strength to MOVE my legs, someone has to lift both of them, and the other person arranges the piece of foam and rests my legs onto it.

But the tech, either confusing me with a different patient, or forgetting that I can’t move my legs independently, seemed a bit impatient as she motioned for me to ‘get on the foam’

THIS is the point where she may have just been indicating, “Hey, there’s your foam!” but I READ it as, “Get your leg up there!”

So I said, “Um, I can’t move my leg on my own, I need someone to lift up both legs.”

She responded, “You did it YESTERDAY…”

And I totally lost it. I cried. I sobbed. I was a little diaper baby.

I felt so weak, so useless. Maybe I did do it the day before, I don’t remember, but on THIS day my pain and exhaustion were such that I could NOT do it at all.

I’m NOT not using the good mug anymore!

Before there could be too many tears and recriminations, we worked it out and all is well. The tech is lovely, it was simply a misunderstanding with someone (me) who is at a raw and sensitive time in her life and is on high-dose Dex. Maybe the tech is, too, come to think of it…

But I felt — I still feel — guilty for being unable to do what she wanted me to do. I felt guilty for getting weaker. I hate that.

One should not feel guilty for being sick, and I know this (you’re all going to tell me this in the comments, but I DO know this!!)  In short, I felt like a disappointment.

Don’t Knit For Me
The truth is, I really don’t need it…

Next on my hit parade is trying to find ways to tell folks THANK YOU, but the gift they want to give me will probably actually be a bit of a burden, and I don’t think I can deal with that as graciously as I would like to. Then I get resentful for the NEED to be gracious.

Then I realize that being gracious is the one thing that I still can do, even when I can’t walk well, or sleep all day, or knit. Being gracious takes very little effort, and is what will allow me to keep my humanity. And I feel like I’m failing in that department.

Some VERY KIND folks were talking about knitting a blanket for me on an online knitting site, I only heard about it because someone mentioned it in the comments for my blog. Such a lovely gesture, but so wasted on this incredibly hot, hot, woman.

I love the idea of charity knitting, I love the idea of doing something you love to help someone else. It’s a kind thing, and if the recipient needs a blanket then that’s a wonderful gift!

But if the recipient DOESN’T need a blanket, or a hat, or a jacket, or any knitted good at all, then is there a need to knit it up? Is the need about the patient at that point, or about making the person doing the knitting feel good about themselves?

I have MORE WOOL GARMENTS in my home than any other human being in the world. I am actively LOOKING for places to get rid of wool garments. I am HOT all the time, I seldom use blankets (I sleep under a sheet, even for most of the Winter) and a blanket is just a waste for me. In my life very few folks have knit for me, and I treasure each gift. The last thing I want to do is NOT appreciate a knit gift, but I also want to be able to tell folks, THIS MIGHT NOT END WELL IF YOU HAVE GREAT EXPECTATIONS…

Add to that how picky I am about my yarn, how sensitive my skin is right now, and the idea of receiving a box (BTW, opening boxes, extremely hard when you’re exhausted) cataloging a gift, writing a thank you note, finding a place to PUT the gift (Goodwill? A cancer charity?) Well, that’s all a ton of work, and I’d rather someone just message me to say, “Thinking of you, have a great day today!” than saddle me with the extra physical effort.

But when I said, “No blankets, please!” on FaceBook I heard from a few folks that I might have been more ‘gracious’ about it, and perhaps I could just take the blankets and send them to Gilda’s Club or something, and, besides (one woman wrote) that “every stitch in the blanket is a prayer!”

Which means I should — what? — donate it to a church instead of a cancer center?

I’d be happy to, but perhaps the blanket knitter should go to that trouble. I can barely get through a day without adding extra errands to my busy schedule of sleeping, sleeping and climbing onto tables to be lazered.

Don’t Pray For Me
Or, if you do, which is fine and lovely, but I don’t need to know about it.

And this brings me to prayer.

I’m not really a praying person, I have my own beliefs that I would not expect another person to adhere to. If prayer makes you feel more connected with your humanity and eternity, then THAT is exactly what you need.

For me, that is achieved through the repetitive activities I love, like biking, knitting, singing – I find great peace in all of them. Even in beating egg whites. It’s all a lovely, repeating sound echo that can get into my brain and bring me peace.

But sometimes – SOMETIMES – when folks say they’re “praying for you” you just sense that they want something back in terms of fulsome thanks, or a whisper, “Prayer DOES work, you know…” Folks sometimes REALLY need for me to buy into the power of the god of the talking snake, they need it for themselves, they need me to know that they’re prayers are BETTER than ‘good thoughts’ and will make the difference.

But I don’t believe in magic.

Like Mayo, St Mungos Apparently ALSO has Chihuly Glass pieces.

I love Harry Potter, a most EXCELLENT series of books. But I no more believe that Albus Dumbledore is going to get me checked into St. Mungos than I believe a nice guy with wounds in his hands and sides is going to remove my cancer.

I don’t JUDGE folks for believing it, although I realize it can sound that way. If you’ve been raised to believe that what you believe is RIGHT (and I was raised as a pretty firm Fundamentalist Methodist) then any doubting by someone else can sometimes feel as if they’re trying to question, or cut down, your beliefs.

A belief is SUCH a personal thing. You cannot CHOOSE a belief, it is — by definition — what you BELIEVE. I think because of societal pressures, ease of social mobility, the need to just get along in a family and community, some folks DO choose to believe what their family has all believed before them. I choose not to.

My belief is simple; whatever god there is can be found in the action of a human helping another human, or helping make the world a better place. Period.

So pray for me, or don’t, but please don’t feel badly if I would rather put my trust in Minerva McGonagall over Mother Mary. Professor McGonagall is definitely more my jam.

Don’t Cook For Me
Have I mentioned I’m 5?

I’m a picky eater. I eat well, and balanced, meals, but I’m picky. I hate raw tomato (cooked is nice) I’m not a fan of most cheese (too heavy for me) and beans are WAY too rich unless they’re mixed in with something else. Light beans, like green beans and half runners and even navy beans are great, but legumes with more oomph to them (lentils, chick peas, etc.) are just SO rich on my stomach that I’m generally sorry for days that I ate them.

A Nice Stew

I like meat, but not too much. A little bit of chicken, a tiny bit of pork. Just something to give the rice and broccoli flavor.

Spices are to be avoided. I’m a super taster, and when I put something spicy in my mouth I feel it for hours, if not days. I ate some pecans today that were not supposed to be spicy, but 8 hours later and my mouth still burns (see, radiation side effects…)

SO I am VERY hard to cook for. Once you know what I can eat, it’s pretty easy and I’m kind of a boring eater. Often Gerry will make himself and the kids much more exciting stuff, but leave me, happily, with three food items I know and love.

So when folks WANT to cook for me, I am very grateful and happy, but I also am on pins and needles. What if I don’t like what they cook? Will it be bitchy to say, ‘Oh, not a cheese fan!’ – I mean, don’t the ads on TV tell us that EVERYONE loves cheese? I can take it in small doses, and goat cheese is easier for me than cow cheese, but I’m just an oddball.

And, as odd as it sounds, I get SO MUCH JOY FROM MY FOOD that I don’t want to lose any of it, I want to eat what I love, and love what I eat. Once the cancer stuff is done, if you want to cook me a meal and try to get me to experiment, that is great. While I’m on the mend, I’ll just stick to the kinds of food that I’m happy with, that make me happy!

Conclusion
So now you know. I can be an ungrateful bitch, and I’m not thrilled with that aspect of me. But I hate to be beholden to someone for something that I didn’t really want to begin with, and am not really going to use.

One thing that happened today that made me INCREDIBLY GRATEFUL was that my biz partner, Kathleen, arranged for her hair stylist to come to my home and cut my hair SHORT. I’d wanted this for a while, but there is NO WAY I’m going to be able to sit in a salon chair for a haircut, let alone get there.

The cut, lovely, and my face is SO round with the Dex!

So Kathleen’s friend, Janet, cut my hair, and it is without a doubt one of the nicest things that’s ever happened to me!

And during the cut another friend, Beth, came by and gave Jasper a happy, happy walk, which was SUCH a lovely thing to do!

Believe me, I am UNBELIEVABLY grateful for all the love, the care, the gifts, the help with our situation. But I felt it might be important – ? interesting -? to share my feelings about gifts with which I struggle.

Women don’t often speak out like this, we’re supposed to clap our hands and say, “Oh my goodness, you READ my mind! This is EXACTLY what I wanted and I didn’t know it!”

But I’m not always willing or able to say that. And I know it upsets some folks.

And I’m sorry.

Damn. When will I stop saying I’m sorry.

38 thoughts on “I’m Sorry..?

  1. Done it myself. Felt guilty for my illness/injury. You’re not alone in that. Pers, I love you even if you are bitchy. It’s ok. I want you to be bitchy for a LONG time (just healthier for most of it).

  2. Hurray for you! As for meltdowns, let them come. Vocalize them. It actually helps those that have what I call “the helping flutters”…they flutter around, trying desperately to find something to do to help. The meltdown helps them understand that fluttering can make you crazy.
    Ask me sometime, about the doctor in the hospital who refused to listen, kept saying “at your age…” followed by some inane nostrum. I finally threw a screaming fit, threw him verbally out of the room, commenting that his cutesy little 2 pound weights were lighter than the feed pans I regularly carried around.
    We really do understand, dear friend. When you feel up to it, is there anything that would make you smile? Going to the First Church of United Fiber, maybe? (Gdrvvvvvr)

  3. I told family and friends what I wanted and needed and luckily they complied. I was so mad I had cancer I kept a diary in which I cursed the universe, the god I don’t believe in and my parents for giving me crappy genes. It don’t know why but it helped. Cancer sucks there is no getting around it and we cope with the pain and treatment as best as we can. Ditch the guilt and do whatever it is you need to heal.

  4. I’d say thank you for your effort and move on. BUT I’m Leslie and you’re Annie.

    I will not knit for you. I will not cook for you. My praying is sort of thinking of you but not going to a certain place/image.

    Do not let people make you feel guilty about stating what you want and what you like and what you can and cannot do at any particular time. Please! And by the way, nobody “wages a battle” with cancer. I think that’s a really overdone line. One copes with cancer, goes through whatever treatment they are offered (and hopefully can afford) and hopes to come out on the right side of the street.

    You’ve meant a whole lot to me for many years. I wish you well. I send good wishes to you, Gerry, the kids, the pets and all your friends who are near enough to do things for you.

  5. I think it’s important for you to express what you want, don’t want, need and don’t need because there are A LOT of people who want to “do” for you!
    I won’t knit for you, but as I knit I’ll think of you and when you taught me to combination knit. I will knit baby hats and hand warmers to give away with you in mind.
    I won’t cook for you because by the time it gets from Connecticut to Minnesota it’ll be cold.
    I will pray for you but you won’t hear me or hear about it. It’ll be there in the knitting.
    I read your posts to my husband (he had costocondritis for real once), and start out with “remember my friend Annie on Facebook..” because that’s what I feel like you are!
    So you complain, laugh, cry – we won’t think any less of you.

  6. I’m just going to be here, ready to read whatever you need to share. Ready to sympathize, empathize, hope the best for you in your recovery. I am always interested in whatever you share-but if you don’t feel like sharing for a while, that’s OK too..no pressure. I just want you to know you are heard, appreciated, respected…no expectations, I won’t pray for you but will hold good thoughts-no thanks necessary-because I choose to. This is your time to focus on what you need-not on anyone else’s expectations.

  7. Thank you for being honest! GREAT haircut, and was that not a perfect gesture? And the dog walking… things you really want/need and I hope you don’t have to request. I’m with you about “thoughts and prayers” and often find myself telling someone I’m sending them energy, but what I really mean is that they’re on my mind and I am hoping, hoping, hoping for good things. Now, for you. Do what you need to do, ask for (demand) the rest and no apologies. You’re doing people a favor by telling them what you need/want as they want to help.

  8. I think you are entitled to have things your way, Annie. I know what steroids can do to a person. You’re in pain and undergoing treatments that bring on more pain. You know what you can and cannot do and that will change from day to day. Those who say you’re not being grateful enough can take a flying leap. You didn’t ask for their help and you don’t have to take it if offered. Everyone’s cancer journey is unique. Yours will not be like theirs or their friends. That’s my 2 cents for what it’s worth.

  9. Sometimes I think the only useful prayer is “Lord save us from ‘helpful’ people!”.
    I went through chemo and surgery last year, and was blessed with friends who responded to specific requests, including a vegetarian friend who went to the supermarket and bought me a big hunk of pork, when I’d been told by my chemo team not to eat raw veggies or any meat that wasn’t well done and all I could think of that might taste good was pulled pork.

    Seriously, though, right now, your needs and feelings take precedence over anybody else’s.

  10. Apologies for the earlier “thoughts and prayers” response. I hear you. Didn’t mean to be a part of the problem.

  11. Annie – first I want to say how deeply sorry I am about your diagnosis and all you’re going through. You are NOT an ungrateful bitch! Right now it’s all about you and what you need/want. A haircut, dog walk, maybe laundry- help with things that are difficult is perfect. Continue to let people help where they can.

    I went through treatment for breast cancer 2 years ago and realized people don’t know what to say or do but want to make you know they care. I got sick of people I barely knew telling me how strong and brave I was. No clue! I found you take 1 day and 1 treatment at a time and slog forward.

    As for prayer- just know the knitting community is sending you love and positive thoughts that will hopefully bolster you. Whatever people want to call it that’s what it amounts to.

    We’re rooting for you and hope you find some relief soon.

  12. Annie, you do you!! Your recovery is yours. It looks like it looks, and you do it the way you do it. I learned that in the ’90s when it seemed like everyone around me was dying. I learned that people frequently only want to give you what they think you should want, without a lot of thought into what it is that will actually help you. If I were closer (not in NY) I would be glad to run your errands, or clean your house, if that’s what you needed. As I am halfway across the country, what I can do is listen. (or read, as the case may be)

  13. Annie, this was perfect! How are we supposed to know what you want if you don’t tell us? And you are entitled to WHATEVER makes you happy. Anyone who gets offended is an unworthy bitch. So there.
    I am sending you every healing thought I can muster up. Would ice cream help your “hot mouth” ? Sometimes my patients on high doses of steroids found that helped.
    Xoxo Cathy Silver

  14. Thank you for setting clearly stated limits. Having been thru cancer and other extreme health issues I can appreciate the sentiments.

  15. At rock and roll camp for girls (and transgender and non-binary) we teach them and ourselves, instead of I’m sorry, we say I ROCK!
    So, my dear, YOU ROCK!!

    And like Malia & Sasha so famously told their daddy, “You do you.”
    You honesty sits pretty damn fine with with me. xo

  16. You don’t know me but I’m sending love from Kansas and admire that you can write/type your thoughts so well when you’re so exhausted. Some day if I ever have cancer I hope the people in my world will treat me so well. I’m such a “caring for everyone else” kind of person I don’t know how to ROCK! lol It’s so hard for people to understand why it’s not the best plan to send knits, etc. I hope they get it figured out but somehow I’m sure you’ll end up needing to rehome a few heartfelt gifts that were made with prayers in every stitch. Take care and keep writing, dear. Loving every word and waiting for the beautiful words of “tumors are smaller” and “remission” and “taking a bike ride”.

    • Thank you! I am EXTREMELY FORTUNATE in the quality and amount of the friends I have gathering around me. I know how lucky I am, and my most fervent wish is that EVERYONE suffering from something like this would have the support (emotional AND medical) that I’m able to have.

      As a general note (not directed to Laura specifically): If Minnesota can do this for little ‘ol low income ME, then YOUR STATE can do this for you. Don’t let your politicians lie about the ACA, and even worse, convince YOU that their lies are true.

      We need health insurance coverage for EVERY citizen in this amazing nation.

  17. Yes. Yes. Yes. A hundred times yes! When I went through treatments for Diffuse Large B-cell lymphoma ten years ago (yes; 10 years ago; I hope that brings some light to your world) it was not about “fighting” or “pushing through” or “beating cancer.” It was only about . . . enduring. From one day to the next, from one treatment to the next. Simple enduring. I am sending you All the Good JuJu, Annie. Endure. XO

    (I apologize if this is a duplcate-ish comment. My original comment seemed to go awry somehow. . . )

  18. My mother likes to say, as a cross between her Protestant upbringing and many Catholic friends, that she will “light a Presbyterian candle” for anyone going through tough times. It means she’s thinking of them, hoping they are well today, that good things happen, that they have the strength they need. So I’m lighting a Presbyterian candle for you.

  19. Annie, thank you so much for being honest about what gifts are appreciated (or unappreciated). So many well-intentioned people don’t realize that they can make life harder for the people they love with their “gifts” (which start to feel like obligations, clutter, and guilt weighing her/him down.) I personally would feel SO betrayed if I gave a friend a hand-knit-thing which was received with fake sincerity and a sense of dread. I would want to know right then and there if that gift would be better received elsewhere!

    I’ve had chronic health issues for years now, and at its worst my MIL used to send me all sorts of “gifts.” I got boxes upon boxes of plush toys, flowers, and whatever else made her think of me on Amazon. It was well-intentioned of course, but I hardly had the energy to feed myself much less open a bunch of boxes, break them down, recycle the packaging, write the thank-yous, and find a place for the stuff. I don’t even like flowers that much as gifts (and DH is allergic anyhow), but every time I got flowers I felt obliged to display them in a vase, change out the water, clean the vase, dispose of the flowers, etc. All of those little things add up to a lot of spoons for an ill person that others really take for granted!

    I finally had a talk with the MIL and explained that it was creating more work for me. We talked about what kinds of gifts would be appreciated, and she mentioned helping me clean my house (which had become truly awful at this point). She came to visit, and well… it was worse than she had imagined! She did help out a bit, but then convinced me to try out a cleaning lady service which she would pay for. I told her I would try it, but that I didn’t have the energy to arrange/look up reviews/etc. She set everything up and all I had to do was meet the woman (at my own kitchen table) and say “yep, she seems cool!”

    I resisted at first, but it ended up being the most AMAZING gift! I was spending any scrap of extra energy I had on trying to keep the house somewhat clean, and that was NOT good for Ye Olde Depression. Now I get to use those precious “good days” on things I like to do like crafting and music, and my MIL gets to give me a tangible gift that gets very much appreciated. Win-Win! It beats the hell out of flowers and boxes!

    Please try not to feel guilty for telling people what you really want (or don’t want)! Honesty makes us all feel better in the end!

Leave a Reply

Your email address will not be published. Required fields are marked *