Monday, November 11, 2013

Serious Fatigue

Right now, I walk a weird line.  Having written a blog that is based on humor, and now finding myself in a very unfunny place, what do I do?  Do I keep writing?  Do I wait until I can make what I'm experiencing amusing for my readers?  Do I hope for the best, or do I just let those of you who are now invested in my story know what life is like for me, even if it's dreary and complaining?

My plan from the beginning was to chronicle breast cancer in a non-threatening and amusing way, so that when others got it and did what I did - google for first-hand stories - they would find something not so scary. Because, early treatment really isn't scary and it isn't like the movies or TV with all that barfing and crying. All that seemed to be out there when I was diagnosed were blogs of people who died, or those of people who were still writing (and complaining) about cancer ten years past their treatment, making it seem like the worst thing that could happen (which for them it may be, but it wasn't for me and I imagine it isn't for everybody).  I felt like it would be a blip in my life and then over; I'd be annoyed at having one boob and that would be it.  I wanted others to know that people like me are out there -that we had cancer and let it go and that is okay, we don't have to run pink races or be activists or live a life defined by one bad experience.   Since I couldn't find a blog like that - I would write it.

As my treatment ended and I had my 3 month check-up post-therapy I had decided to say good-bye here and close up shop.  That post is half written, lying around on my computer somewhere.

Because of course, I never finished it due to the discovery of mets to my liver.  I now would not be one for whom life would go on, spent with occasional annoyance at my boob-less state but mostly just enjoying my family and career.  Instead, I would have cancer material for the rest of my very short life. Cancer could never be the temporary, nerve-wracking yet interesting life experience that I had thought it would be. It was going to kill me.


And, while I could still have some laughs along the way, it was going to get grim.  I mean, death isn't always funny if you aren't slipping on a banana peel.  But I decided to write about it up to the end, or as close to the end as I could get.  Every story needs an ending and while we know mine, we don't know the details.  So I decided to continue along as far as I could get.

And so here I am, not close to death, I don't think,  but also in a very unfunny place right now.  Not as unfunny as c-diff, which is probably the un-funniest experience of my life, but my life right now is pretty miserable.

Where I am and what I'm doing is sleeping.

All the time.

18 hours a day, at least.  I sleep like my cat, who is in kitty heaven having me in bed continually.  I sleep so much  I am only hoping I can finish typing this before I go back to bed.

Now, if you follow me on facebook, you may have seen posts or likes, but they don't give much of an indication of what I'm really doing, all of the time.  Which is lying in bed, and not only lying but also sleeping. I wake up, have to pee, which wears me out so much I need another six hours.  I wake up, walk into the living room to see who is around, which is so exhausting I need to go back and sleep for two more.  Because family is important, and food is important, I do get up and eat, and stay up after that.  My body somehow adjusts itself to stay awake a few hours at night.  But that's all.

Just a month or so ago I had energy.  I was creating pendants (don't buy one) and was excited about life and starting a little business that could help my son with minor college expenses (very minor, like a Starbucks Mocha, but still...). I knew I was sick, and felt sick compared to when I was healthy - but life was okay.   I enjoyed getting up and making the jewelry and picking my son up from school.  I was happy sitting by my computer, watching my hummingbirds feed from a feeder I bought, from nectar I made, and while my life was restricted, those little things were joyful.  I wasn't able to cook dinner for my family - standing for an hour or more was hard and I have zero appetite and believe it or not, when nothing sounds good you don't want to cook.  So, my husband has taken that job over - but I could make myself a bagel in the morning. I read the paper, as I have since I was six. I pick my son up from school.  I went with a friend to a show.

A month ago, I felt like I was getting better and that I'd soon be able to grocery shop again, cook again, live a normal life again.  The cancer was stable, I'd radiated it, I had time, I thought.  It was getting easier to walk, to stand, to breathe.   I told my husband that I thought he'd get a break, that I'd feel good enough to do chores and be normal soon.  One day, I even cleaned the entire living room - dusted, vacuumed, wiped the leather chair, stuff I hadn't done in a year.    I invited people for the holidays, made gifts, thought ahead.  Life was small but okay and I felt like it was going to get better.  I knew it wasn't forever, but I thought I might have some time before cancer grew back and I became ill again.

Then about two weeks ago, I crashed.  I got out of bed at about 10:30 and still felt exhausted, my legs like rubber.  I drank half a cup of coffee, skimmed the paper, and decided to go back to bed. It was just too early.   I slept until 1:30 and got up, checked on the dogs, sat in the dining room where the sunlight and computer is, and then 30 minutes later, went back to bed and slept some more. I slept until 4:30 or 5:00.  I woke up long enough to eat dinner with my family, check facebook, and then nap until  8:30 pm.  My husband woke me to watch TV, and I stayed awake the longest period of that day - until 11:00.  Then I went right back to sleep.  I'd been awake maybe 6 hours that day.

Okay, so this has happened before.  I know what this is, (although not why) and I call it my "downer day."   Tomorrow, I thought,  I'll be tired but better, and the next day I'll be a little weaker but be fine,  and the day after I'll be normal.  For me, anyway.

But that hasn't happened. I'm still sleeping all day.  At first, I thought I was getting a cold, like my son had, but that isn't the case.   I am just completely and utterly fatigued, even when awake, which is just brief periods a day.  During those minutes, I might look at facebook or check my email but it's not long until my eyes start to close.    My legs shake as I walk; they feel like jello and I am terribly achy and weak.  Getting dressed seems difficult to the point of impossible, and I spend the day in PJs, carrying a blanket around like a ghost because I'm cold.  I can't shower as I can't stand on these spaghetti legs, so I take a bath, but not daily.  It's too much effort to fill the tub, get the temperature right, and I'm afraid I'll fall asleep in the middle and flood my house.  I can't come up with words, talking is difficult, and even typing - I make many mistakes.  This post has been days in the writing.

My doctor had prescribed me ritalin for fatigue.  That was for normal "cancer" fatigue - and the drug worked fine for that.  I'd take one occassionally when I'd start to feel sleepy in the afternoon and had something to do, and I'd wake up enough to do whatever it was.   Now I take two and sleep for four more hours.  I'm not even taking pain medicine right now, I'm too tired, too often sleeping.  I should be going through withdrawal, yes?  I've been on pain meds for three years.   If so, I'm just sleeping through it.   This is fatigue unlike any I have ever experienced and it's now lasted two weeks.  I've slept for two weeks pretty much straight.   It's time to confess. Because, what if I don't recover?  What if this is it?  What if my life is like this now and won't get any better?

It's not funny.  I'm pissed.  I have things to do.  The holidays are coming.  A grandbaby is coming. I have accepted, quite gracefully I might add, that my life is going to be cut short.  But I wasn't planning to sleep what's left of it away.  I figured I'd get sick, the cancer would grow, overwhelm my body, I'd have hospice in, and then turn up the morphine.  Bye.  There was nothing in any book I read that said I had to sleep 18 hour days for weeks first.

Supposedly, the cancer in my body is quiet so I don't know why this is happening.  I suppose it could be a form of anemia.  My red cell count is about 11 which is good for me, normal is about 12.  My doctor does a transfusion when I get down to 8.   But maybe there is a form I don't know about, or maybe something else is going on in my blood.  I don't see him until December, however and even then, what if nothing unusual shows up?   And I'm still like this?

Fatigue is common in cancer patients, I read, due to treatments, cell death, etc.  But I have been doing this for four years, there is nothing new. I've been fatigued.  This  is a whole new level of weakness and fatigue and I'm nervous that it won't improve.

When they say cancer is like riding a rollercoaster, they aren't kidding.  At the end of July, still on Gemzar,  I was able to drive to Carson City to see my sick father (and get a speeding ticket) and, while very tired, arrange for his care.  In early August, I had gamma knife type radiation and fatigue was one of the side effects, but it was nothing like this.  By September and October, off Gemzar, I was feeling so good I was planning for spring, imagining college trips, my son's graduation, little doubt that I'd be there. I'd bought myself enough time with the radiation and perjeta, I figured.   Now, I can't get to my front door.  Now, I can't even stay awake. I can't remember what I've done or said I'd do, and confusion reigns.

All I know is my bed is there with me and my cat in it.   My confused husband every once in a while peeks in, to see if I'm breathing, and then leaves.

I just hope this rollercoaster goes on the upswing again.  Because, I'd be really mad if I wasn't so damn exhausted.

Now I'm going back to sleep.

If you paid for a pendant and want your money back, I'm happy to refund you, just email me.  A few are made but haven't been shipped because I got confused so I will do that ASAP.   I still have a folder of orders that I am hoping I can complete as I enjoy doing them very much.  I keep hoping that I will will get back to normal.  Maybe tomorrow I'll wake up and stay awake.  But I don't know that I will, it's starting to make me very, very nervous that I might have to sleep until the sleep is permanent.


  1. Well, that just sucks. I'm so sorry.

  2. Hugs, Ann.

    Puck. If we shadows have offended,
    Think but this and all is mended,
    That you have but slumber'd here
    While these visions did appear.
    And this weak and idle theme,
    No more yielding but a dream,
    Gentles, do not reprehend:
    If you pardon, we will mend.
    And, as I am an honest Puck,
    If we have unearned luck
    Now to 'scape the serpent's tongue,
    We will make amends ere long;
    Else the Puck a liar call:
    So, good night unto you all.
    Give me your hands, if we be friends,
    And Robin shall restore amends.

  3. Ann I'm sorry to hear your news. You're right, it isn't funny but I guess cancer isn't always funny (who knew!?). But you are also right that for those of us who follow your blog we have come to be attached to you and your story. We worry when you haven't posted. So thanks for using some of your limited energy to check in with us. Maybe you can email your doctor or nurse between naps (or forward them your blog!). I hope this goes away.

  4. I hope that you will continue to write whatever it is you want to share with us, humorous or not. I know that I am invested in you & find myself thinking about how you're doing when I haven't seen a post in a while. I hope you get to the cause of your fatigue soon, it sounds really frustrating :(

  5. Ann please keep blogging whenever you can. I love your blog and your writing, not because it is funny, but because it is honest. Your blog was the first blog I found post BC. At first I read it to help me through my treatment, but I continue to read it because I have come to care so much about you and your family. I hope the fatigue lifts quickly - but at least the cat is having a good time for now!

  6. The comments above say it. Keep blogging. I have followed your blog since day 1 and will continue to do so because I learn from you. That is a great gift. Oh, and I understand the cat thing. Mine loves it when I'm in bed. I pray the fatigue will pass soon. Know that many folks you have never met in person care about you and through your blog have gotten to know you. Thanks.

  7. Damn! Can a nurse come to your house and get a blood sample? Maybe you are anemic and need a transfusion? December is too long to wait.

  8. Ann, have you had your 02 levels checked? This happened to me a few weeks ago, turned out that taking more than 10 steps dropped my oxygen into the low 80s. A week in the hospital later they figured out it was an atypical reaction to the flu and pneumonitis from my chemo. Prednisone and tamiflu kicked it.

    You're in my thoughts.


  9. I have no words; only golden threads of prayers rising up to Heaven to The One Who knows all needs. Strength and Grace for you. Lovelovelove, Deborah

  10. Write when you can, Ann, funny or not. Hoping the coaster takes a surprise twist up into the sunlight for you very soon instead of this long, dark tunnel.

  11. You don't know me but I wanted you to know I think of you often and pray for you daily. I have found a sense of healing from reading your blog for my heart. My grandma was taken too soon by ovarian cancer and she shared a great deal of your traits. Thank you for being so honest and bold. Thank you for sharing your story and I pray that you will find the strength to continue as you are such an inspiration to so many people.

  12. Please keep blogging when you can. We read you because you are real and because we care about you. Don't wait much longer to call your doctor, this needs to be checked on. Hugs and prayers.
    Elizabeth J.

  13. Thank you for using some of your precious energy to let us know how you are. I join the above voices to say how deeply I (we) care about you. Sending the strongest wishes of comfort and love; just do what you need to do for yourself and your loved ones. Love, sharon

  14. Thinking of you and your family and prayers and hugs for you. Blog when you want to, funny or not, and don't blog when it is too much for you. We love to hear from you whatever you have to say and we care about what you are going through, but never want this to be a burden.

  15. Ann, thank you for posting this, as always so honest! Do what you can, when you can and write only when you are able. You have many people behind you cheering you on and wishing only the best for you, we are not going away just because you no longer write so much. xx

  16. Yes, cancer can be funny, but it can also be awful. Most of your readers value your writing for its honesty and clarity. Write what you wish and what you can.

  17. Thank you for the gift of your honest experience. I wouldn't wait until December to see your doc. Maybe they could help your energy levels: supplemental oxygen, a sooner transfusion, and/or different/ higher dose stimulants?

  18. My heart is with you ... as always.

  19. I agree with several of the posts above. Don't wait till December to see your doctor. Please have someone take you to see your oncologist now! We want you to continue writing and living life through open eyes not closed. .

  20. I agree with above re: getting checked out with Oxygen and blood counts, but I am also worried about your mood. Especially in cancer patients, depression is very very common and can manifest early as just a loss of appetite and fatigue. It's just as much of a disease as anything else and very important to address as it might have longer term implications. At the risk of prying, are you seeing a therapist or psychiatrist? They often have them affiliated with cancer centers and I think it would be a good idea for one to talk to you.

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  22. I'm sorry to hear about your "Endless Sleep" situation. I know that there's so much more that you'd rather be doing right now. Hope you keep posting as long as you are willing and/or able to. Like many others, I've committed to knowing what's going with you. And no, it doesn't have to be amusing, just real (which you always are).
    Best wishes and I hope you get better.

  23. Thanks for the update, Ann. So sorry to hear about this new trial - you've gone thru so much. Hang in there. We are thinking of you and wishing you some energy in the coming days.

  24. So good to hear from you, funny or not funny! Sleepy or not sleepy! I kept checking your blog every day and was so relieved to hear from you again! I thought you'd taken a turn for the worst and wondered how we would even know...

    Is there something you can tell/teach us that you haven't yet? What message would you like to leave for those of us who are not yet in your shoes? What would you have (or not) done differently? I'm trying to learn as much from you as I can. While funny, this blog is also incredibly educational and eye opening. Thank you for having the courage to share your life with the world... It is a beautiful gift and I am most grateful for it.

    I agree that if you are able, go to the hospital and get this fatigue dealt with.

    Hugs & Aloha from Hawaii!

  25. Hi Ann - have read your blog for a while but never commented before...and this ma be totally crazy to suggest, but have you checked your Vitamin D? Simple blood test, and your symptoms sound a little like severe vit D deficiency. Just a thought. Hope you feel better soon, I love reading your writing, funny or not. Sending warm thoughts!!! Lina

  26. I feel your fatigue Ann.My doctor started me on steroids for 17 days.Today is day one,also take ritalin, Not sleeping that much but i do sit a lot and walk with a wobble!.Sending you prayers.

  27. Sorry to hear you are having such trouble. I would just echo what several others have said and go to the dr. There are lots of things that cause fatigue to investigate and it may be something unrelated to the cancer.

  28. Oh, Ann. When you didn't post for a while, I got this notion that you were feeling perky and out doing perky "Ann" type things. I am sorry about this. What I will say is this: In the end, what matters is you, your family, and your needs. If you have the choice between blogging and spending time with the family, we all certainly understand your choice. I hope that they find some stupid little easily fixed thing that will restore some of your lost energy.

  29. Ann, since I've just gone from bones only, to bones extremely with also a liver full and two on that brain lining thing, I wont feel mean to share that when my friend Kathy in MN finally quit treatment (liver only), her doctor told her she would get more and more and more tired. This is what cancer finally does to us; slows us down, makes us sleep more and more as it wreaks its havoc in the liver. Like the slow winding down of a fine time piece. You've been so resilient, just accept that this will not always be so; plan visits in your beautiful bedroom, lunches with friends as picnics on the bed. Less pushing on your part, more allowances on the part of others.

    I hope your sleep is sound, and not filled with loud, disruptive dreams. -shelli

  30. Anne you have inspired so many people. You have been strong, and funny and you have brought an intelligent truth to those people going through cancer. Its ok to complain. Please do. It wouldn't be real if you didnt.
    And while I wholeheartedly agree what you are enduring can never be compared to an early cancer diagnosis, the reality is an "early" breast cancer diagnosis is terrifying. Its terrifying if you have the foresight and the knowledge of what the end is like for a patient with breast cancer. Its terrifying for an "early" cancer patient who has witnessed the death of a friend or a family member. And you know what, there is nothing wrong with that. Its better to feel terrifyed knowing your death may be earlier than you had planned, then to "skip" through treatment and then to not really let the weight of the situation saturate you. To allow yourself to feel that fear, and then decide, I am going to live in the best way I know how, with faith, or hope, with or without God, whatever takes you through those times. But , on the otherside of treatment to feel stronger having come to terms with that intense, overwhelming fear. I dont think any of us is truly prepared until we are at the door, but to take time to contemplate, to make peace, whether or not that is through Kubler-Ross's stages, or some variant, may just make it slightly easier on our final round.
    Thank you Anne. Thank you for enriching our lives with your words. You have helped us appreciate each day. I wish that you will be overwhelmed by peace, because you deserve that.

  31. THanks Ann. I hope that this too shall pass and I'm on your side 100% to make your son's graduation. I will be praying for you.

  32. I have been following your blog for a while now, but have never commented before. But now I want to thank you for caring enough to take the time to publish a blog that is truly insightful and wise. You may have started out trying to impart a humorous slant to breast cancer, but in chronicling your journey you have a told a story that is filled with wisdom and an indomitable spirit in the face of deep heartache. You have never backed away from telling us exactly how you feel about your situation, the medical community and the breast cancer establishment. And you have done so in a way that is filled with pathos. Your humorous and sardonic wit helps us all swallow the bitter nature of the cruel reality of breast cancer. I am now an early stager. I find it hard not hold my breath waiting for the progression that may or may not come. But I can honestly say that, if it does come for me, I will be better prepared to face it after reading your thoughts. I admire you immensely for your courage in pouring out your heart and heartache to thousands of fellow sufferers and, through your special writing gifts, giving us all a reason to smile through our tears. Thank you, Ann.

  33. I have just been diagnosed and have read your blog from beginning to end. It makes me less scared to go through early treatment, but, I must admit, terrifies me as to what may happen later on. I cannot believe your courage and indomitable spirit. Your honest description of the entire process has prepared me as to what may lie ahead, and has made me better prepared to make certain decisions. Whatever happens, I pray that I have one tenth of the strength and courage that you have shown.

  34. Anne, have your liver function tests been checked recently? Even though the tumors were stable, you could have some radiation induced hepatitis which might respond to prednisone. Also, MRI of the brain might be useful too. Just a couple of thoughts. I hope you feel better soon.

  35. Other posters have said it better but PLEASE don't wait until December to see a doctor. There must be something they can check for and give you relief. This can't be 'it' for you. I believe it was Sonya who said it could be your oxygen levels. Best of luck to you, Ginger

  36. Ditto to all of the above. Thinking of you and wishing you well, always.

    -your fan in MN

  37. Ann, your greatest gift is not that you are funny. (Although, you certainly have a fantastic sense of humor.) Your greatest gift is that you are real. You are genuine. And you shine brightly even when you feel "dreary and complaining". Your blog is absolutely amazing. As are you. Please take care of yourself and know that many are thinking of you and praying for your healing.

  38. I've recently found your blog when I was researching how to end my breast cancer blog ( I was diagnosed in 2011 with a disease very similar to yours (stage 2, HER2 positive). After reading most of your posts, I decided I couldn't end my blog. I started it with the very same intentions you had, "to chronicle breast cancer in a non-threatening and amusing way" as a way to reassure my friends, family and myself. My friends told me how brave I was, how upbeat, how, with an attitude like mine, I will outlive them all. I felt proud and strong. Not anymore. Now I am more realistic, vulnerable and scared. You tell the truth. I have passed on the link to your blog so my friends and family will understand the whole breast cancer story, and not just the "blip in my life" from which I would recover, if not whole, mostly in tack. Maybe I will live to be elderly, maybe not, but your blog has humbled me and taught me something about how to manage expectations about health, bc and life's "blips." Thanks very much. I wish you well, and look forward to following your work. Amy

  39. Oh Ann, I hope this is a temporary thing. My fatigue is mostly in the evening. It is hard to watch TV with my husband. To my surprise, last night he was the one to not off. I think it may have been from the relief to have me home from hospital after a week long stay.

    I share your worry about cancer fatigue and wish you all the best.

    ~Kate, of Kate Has Cancer

  40. I love you Ann, and am grateful for whatever entries you can muster...and of course understand when you can't. The only way to be genuinely funny about cancer, and especially dying, is if you are genuine. The roller coaster up AND down. This isn't a Lifetime made-for-tv movie, this is real, and something most of us can't even imagine. So give it to us straight, whatever you can, when you can. When it's funny be funny, when it's sad be sad, when it's both be both. Hoping and wishing that the universe returns to you even a fraction of the energy you have put into educating and entertaining all of us. XOXOXO


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