I’m Sorry… An Open Letter to My Followers

 

breast cancer thirties 30s 30's lymph node nodes axillary node dissection bilateral mastectomy illness port powerport needle anesthesia lymphedema

Hello Dear Readers,

I can’t believe it has been so long since my last post.  I thought about writing to you.  Every. Day.  I began posts that I never finished.  I had things to tell you.  I took a notebook to my appointments and filled page after page with thoughts meant for you over these long weeks months (gasp!) apart.  But I just couldn’t.  Share them.  Here.

It’s difficult for me to admit that things have been just plain crappy.  I’ve had infection after infection (pneumonia, kidney, cellulitis).  Super antibiotic after super antibiotic.  And I have zero energy.  Just getting out of bed each day has been such a struggle.

I’m beginning to think that if I don’t tell myself repeatedly on a morning that I don’t have a choice, I may not be able do it.  I am no stranger to forcing my body and mind to push on when they are begging me to just rest.  But pleading is being replaced more and more by screaming on the part of my exhausted body and mind.  And sometimes I am met with absolute refusal.  There are times during the day, or especially in the early to late evening, when I am just hit with insurmountable fatigue and I must stop, wherever I am, and lie down.

breast cancer thirties 30s 30's lymph node nodes axillary node dissection bilateral mastectomy illness port powerport needle anesthesia lymphedema

 

This was happening before I was diagnosed.  In the months before I heard the words, “Everything we biopsied was malignant,” I was struck with fatigue like this.  The kind of fatigue that stops you in your tracks.  The kind of fatigue that lets you know that if you don’t find a place to lie down and sleep immediately, your body will find one for you, be it a bench or a chair or a carpet or a patch of grass.  Your body doesn’t care about the where.  It will drop you anywhere.

This happens about once or twice a day now.  It’s usually after I’ve been up and out for appointments, etc.  By the time the kids get home, have dinner, and I help with homework, it has already been creeping up on me.  And then I just hit a wall and cannot do “it” anymore — whatever “it” may be.  Not for another minute.  And I go to the couch, drop down, and cannot move again.  It takes a great deal of cajoling to get my body to take me upstairs for bed.  Brushing my teeth seems an insurmountable task.  I just need to crawl into bed after the exhausting trip up the stairs to my room, and fall asleep.

But it is happening earlier in the day, too.  A few days ago, I went to an appointment in the morning and had to lie down in the car afterward and cancel my afternoon appointment.  And when I finally made it home, I had to lie down and couldn’t move again until the kids came home and I convinced my body that it no longer had the luxury of resting time.  But after dinner, I had to lie down again.

I don’t know if I’ve told you this before, but this is not normal for me.  I can usually push, push, push, until everything is taken care of, everyone is in bed, the day is done.  And then I will lay awake for hours, waiting for sleep to come.  And it eventually will, but sometimes not until the birds are beginning to stir outside and I know that the faint early morning light will soon creep through my velvety merlot curtains.  And just a few hours later, it will be time to get up with the kids and for the school routine to begin before I head out the door myself.

Well, that “normal” is long gone…  This hasn’t been happening for months now.  Now, when I hit that metaphorical wall, I will drift in and out of sleep.  Sometimes just until the dead of night.  Other times it is until the dawn begins to break.  But I just can’t stay awake without a major effort.

I do wake frequently.

I was experiencing night sweats “before.”  During the worst of the chemos.  And then ever since my radical hysterectomy and salpingo-oopherectomy two years ago.  But the hot flashes and night sweats that spiked when I had to have my my surgery two years ago had begun to wane (well, somewhat, anyway — when I say “wane,” what I really mean is slip down to a more manageable number/degree, if there is such a thing) about a year ago.

And now… They’ve ramped up again with a vengeance and have become far more intense and overwhelming than what I had been accustomed to, even when they were at their worst.  They have been even more overwhelming and exhausting in the past six months than they were in the first year without my ovaries.  I am waking about three times a night now just completely drenched.   So much so that I need to change whatever I’m wearing each time.  And it doesn’t matter what I’m wearing.  Flannel head-to-toe pajamas — drenched.  A soft robe — drenched.  A cozy sweatshirt and sweatpants — drenched.  Yoga pants and a light top — drenched.  A thin t-shirt and undies — drenched.  Just the undies — drenched.  It really doesn’t matter.  I will often lay a blanket down in the bed to cover the soaked bedding and to give myself a fresh start for the night.  And then I’ll do this maybe twice more per night after each soaking.

breast cancer thirties 30s 30's lymph node nodes axillary node dissection bilateral mastectomy illness port powerport needle anesthesia lymphedema

I’ve tried everything I can think of to curb the frequency or intensity of the night sweats, but nothing helps.

And then every day I find myself breaking out into cold sweats.  My face is dripping with sweat.  Drops of sweat roll down my legs and arms.  And then I find myself shivering and needing to change my clothes because I am so, so wet.

Sure, this happened before.  To a degree.  Surgical menopause at 35 will do that to you.  Or at least that’s what it did to me.  But this, this is so much worse.  It doesn’t feel normal.  So far from it.

It’s concerning and exhausting, to say the least.   I’m hoping (I think?) this increase in frequency and intensity might have something to do with the fevers I’ve been experiencing on a now regular basis over the past six months?  But then, what is causing the fevers?  Sure, I’ve had lots of infections.  But I’ve been on antibiotics consistently, with breaks of only a couple of days, if at all, between.  So it’s unclear as to whether the fevers are linked to the infections.

Sometimes I’m glad I’m too tired to expend the mental energy to think about it!

Well, this has become more of an explanation post than an apology letter.  But I began intent upon focusing on the apology.  Because I do owe you an apology.  You’ve stood by me, reading, commenting, emailing, or sending messages in some other way.  And I haven’t been the best with the communication.  Okay, I’ve been downright shitty, really.  But it is not because I haven’t thought of you.

It is not because I haven’t appreciated you.

It is not because I haven’t wanted to reach out to you.

It is just because.

I wish I could say or do better than this.  But I will try my best to give you what I can, when I can.  And I sincerely hope you’ll continue to reach out to me as you have been.  Because it has meant so much to me.

Even when it doesn’t seem like it, I am listening.  And I am grateful to know that you’ve thought of me, even if it is just a fleeting thought.   Because sometimes that makes all the difference in the world…

Thank you…

p.s.  Because you know I love to stick photos wherever I can, I’m adding a few pictures that illustrate (at least I think so!) the theme of The Daily Post‘s Weekly Photo Challenge topic for this week.  This week’s challenge asks participants to show readers a “Room” or “Rooms.”  Here are a couple of rooms other than the hospital and Cancer Center rooms above…

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The rooms below are from a visit to “Give Kids the World” with my boys’ best friend and his family.

Give Kids The World

B has Duchenne Muscular Dystrophy and was granted his “wish” by the Make A Wish Foundation and “Give Kids the World” back when he and my twins were in pre-school.

We were fortunate to be able to return to “Give Kids the World” with B and his family recently.  I am good friends with B’s mom.  The boys and B’s brother and sister all get along so well.  And we like B’s dad, too.  So it was wonderful to have some special time with B and his whole family.

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These are a few photos from a visit to a series of special rooms on the campus where each child leaves a shiny gold star containing his/her wish behind…  The ceilings were covered with wishes.  What a moving experience.

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Okay, off to bed.  Thanks so much for visiting.  I hope life is being kind to you…

My warmest wishes…

 

52 thoughts on “I’m Sorry… An Open Letter to My Followers

      • Hi, how can I email you privately. I, too, am a cancer patient (female in my thirties). I have a slow growing Non Hodgkins Lymphoma & I have that fatigue you are speaking of. My family & relatives tell me it’s “mind over matter” and hint to the fact that I’m just lazy & not trying hard enough. That’s one of the most hurtful things in this entire process of mine. I’ve had that fatigue for many years before my cancer was found, throughout treatment and still to this day.
        I also deal with those night sweats from time to time since chemo killed my ovaries. I’m hoping to connect with you to see if you have found ways to deal with either of those issues (because I haven’t & I’ve been trying for 4 years now). Thank you.

        • I’m so sorry to hear of what you’ve been going through… And I certainly understand how difficult it can be to deal with debilitating fatigue. I’m sure that feeling as though your family and friends think you are lazy has been very difficult and distressing (and isolating).
          I’m sorry for what you are going through and would be happy to talk privately if you’d still like this. Please feel free to email me: cancerinmythirties@yahoo.com
          Thanks so much for reaching out and I look forward to hearing from you…
          My warmest wishes…

  1. I am so sorry you have to experience all this. No apologies necessary, I am just glad to hear from you. Please know that you are often in my thoughts and prayers. I worry about you and your boys. I wish I could help in some way.

    Seeing all those shiny gold wishes brings tears to my eyes, but sunshine to my heart. My heart sends a virtual gold star wish just for you.

  2. It’s just so good to hear from you…… no apologies necessary. I’m so sorry that you have to experience all of this. I think of you often, sending good wishes your way. Be gentle with yourself.

  3. It breaks my heart to read your blog. You don’t ever have to apologize. I am sorry you are going through this but my prayers for you will be more, that God will be gentle with you and continue to give you the courage to go on as you have done. You are a beautiful woman, inside and out and you are a true inspiration to me. You remind me of how much I have to be grateful for and how much I need to reach out to others, like you are doing here in your blogs. You are truly an inspiration to anyone who reads your blogs. May God give you strength and comfort and remember He is with you ever step of the way. . You are an awesome woman and I am so sorry that you are suffering so much. p.s. I am Jme’s aunt. We all love you.

    • Thank you so much, Patty… I’m so touched by your kind words… Thank you for your prayers, thoughtfulness, and love… You always say such wonderful things. I am not surprised to learn that you are the Aunt Patty of my lifelong dear friend :-) Thank you… xoxo

  4. Apologizing for cancer, that’s dumb. You didn’t ask for it nor want it, now it’s having it’s way with you at your expense which is hitting all fronts. We get it, and know how extremely difficult it can be. <3 HUGS <3 ~D

  5. As said many times by the other commenters, no need to apologize – so glad to hear from you! I’m sorry you’re going through such a tough, exhausting time. Blogging is simply not a priority when it comes to resting, recovering from and fighting cancer. Take care of yourself and lower your expectations of what you “should” do. Your readers will be here whenever you feel the need to give a shout out.

  6. You have no need to apologize. The most important thing you have to do is take care of your own needs above anything. Just know that we will all be thinking about you and hold you in our hearts until we hear from you again.

  7. Its so good to see you again, you’re always in my thoughts. I’m sorry you’re having such a hard time, you really don’t deserve any of this so I hope more than anything that this passes and you regain your energy and strength. Sending you much love dear L xoxox

  8. I was getting concerned. Seems I had good reason. Regardless, it’s good to hear from you. I hope you and your doctors can get it sorted out soon. You’re in my thoughts. Sending you good wishes.

  9. No apology necessary. I’m sorry that you’ve been so very ill. Did you know that you can easily become immune to the antibiotics if you’re on a lot for a lengthy time. They won’t the fight the infections anymore. Sending you lots of love and support. Hugs xo

  10. Oh my gosh, I feel for you! I’m trying not to let myself be scared that I’m having fevers and afternoon naps, an underarm skin rash and vitamin D deficiency, just like what was going on right before they diagnosed me 3.5 years ago. I had HORRIBLE hot flashes when I went through my first, temporary, menopause after double mastectomy. The second menopause appears to be permanent, but I didn’t have hot flashes for the first year and a half of it this time, so why now (?). These new things actually feel more like fevers than hot flashes. Last time, my husband touched my back and jumped back bc he was so shocked at the heat. Now I feel like I’m smoldering, rather than on fire. I did get some relief before from a laser light therapy machine at my chiropractor’s office –he does natural medicine too, and gave me an oil called RC oil which cleared up the infected rash in my armpit, which dermatologists can’t figure out– but they biopsied and say at least it’s not malignant, just like what happened before the BC. I got a staph infection in a skin graft on my chest after the MX. Took antibiotics for six months and they made me very tired too; maybe that is affecting you too? Just want you to know I’m thinking of you, and you are not alone in dealing with this hormonal and depression and infection laden “journey”. Thanks for taking the time to write!

  11. Thinking about you every day.. So happy to hear from you.. Rest when you need to and try not to let things get you down..those sweet boys must surely be your inspiration.. Enjoy them every minute..
    But remember to take time for you..xo

  12. Taking care of yourself comes first. You can just post a photo and a few words… never apologize for being tired. Glad to hear from you just the same… sending strength.

  13. So wonderful to see an update from you…though I am sad to hear how difficult things are for you. As others have said, no apologies necessary. Your energy is best spent on those precious kids of yours. Sending many hugs your way…

  14. No apologies … I, and I’m sure, WE, have been thinking of you and wondering how you were. Truly the apology is mine as I should have touched base when my thoughts have been with you.
    You are an incredible woman … You accomplish more with the challenges you face than many who have fewer challenges.
    You are an awesome example to your children.
    Thoughts of strength and comfort are with you.

  15. Please don’t apologize or feel you have to. Your only priorities should be yourself and your boys. I have been thinking about you. Wondering and hoping you are ok. I am so sorry to find out you’ve been having such a difficult time. Take care of yourself. My thoughts and prayers are with you.

  16. So much love to you and the boys! Taking care of yourself and your family is always top priority. So wishing there was something I could do to make it easier, better, different… Lots of positive mojo your way, always.

  17. Sending you light and hopes for an easier journey. I think of you often and always say a little prayer that you have what you need to make it through this. You amaze me.

  18. Wishing you a cool breeze during those hot flashes! No need to apologize. Here’s to stomping fatigue and to sending curative energy your way. Your journey is a difficult one, so I want to you to know I wish you well. You are one determined gal to muster up the energy to write the blog you just completed–no mean feat. Hugs.

  19. It is so good to hear from you! No apologies are necessary, you are going through enough without feeling guilty about not writing, we’ll be here for you whenever you are able to write. I’ll keep you in my prayers and thoughts for healing. {{{Hugs}}}

  20. Cannot say more than to echo what the others have already- your fight is inspirational, but please don’t waste time worrying about others or doing anything other than taking care of yourself. You’re in my thoughts.

  21. Hey, sweetie :-) I popped by today to see if you’d posted – I’m reassured ;) Keep being strong. Listen to your guts – your body and mind both need rest. Keep any energy you have for enjoying those fabulous little men of yours. Sending you heaps of love and motivation from France xoxo <3

  22. This is my first time to your blog and it is wonderful. I don’t often leave comments, but this time I make an exception. You have a beautiful soul that reaches out from the words on this page and it is beautiful. Thank you for your brave and honest words.

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