Monday, December 19, 2011

c-Diff - Update

Most people recover from C-Diff in 3 to 10 days.  As you all know by now, I am not most people.  It has been very disheartening being sick as long as I have been - since Thanksgiving - but last weekend, I saw an uptick in my health and now I believe I am on a (very long) road to recovery.

My life, since I got out of the hospital on December 3rd has been this:

1.  Mornings about 9:30:  Painfully and oh, oh so slowly, I get out of bed.  My colon hurts, and is swollen, and I am carrying a 9 months pregnant-sized belly around.  My feet were also swollen and I weighed 118 pounds out of the hospital - 18 pounds more than when I went in, and that was before constant diarrhea and  9 days of no eating, so I'm clearly extremely bloated. Sitting up is like climbing a mountain with broken ribs, and trying to put my feet on the floor is like finding a crevice and having to push around to find solid ground.

For a while, I decided to sleep on the couch as I could not breathe lying down in bed.  Then I got out a sloped wedge pillow I had and was able to sleep propped up. My husband wanted me next to him, maybe to keep an eye on me.

2. After the difficulty of getting out of bed, I forced myself to sit at the dining table and have a half cup of decaf coffee and read the paper.  This has been my routine for 18 years, and I wanted that normality.  This was very painful for several reasons: sitting up straight is extraordinarily difficult on whatever was going on inside with my colon;  I'd lost a significant amount of weight and my hard wooden chairs are painful on my butt/back bones, and I have been experiencing neurological problems, so each turn of the head, or eyes, or slight movement, sends electrical shocks down my body that I can actually hear.  It sounds like the whooshing wind.   I force myself to eat a Fage yogurt and read for as long as I can.

3.  Hobble to the bathroom and release toxins.

Many times.

4.  Wash hands and retrieve (slowly and gently) my iPhone and iPad, and head (slowly, hunched, and shuffling) toward the couch.  I had it set up with a small table next to it, a 10 foot Apple charger, a glass of water, pain meds, several pillows for propping, and a blankie.  There I would spend the remainder of the day - until bedtime.   My habit has been to watch documentaries on Netflix (saw some good ones too) and then read for a while with my iPad kindle app, then watch some more documentaries.  I'm reading a book a day, and I'm a picky reader.  Ten bucks a day is a lot to spend, so I'm trying to find more movies or books that last longer.  (Suggestions welcome but I am looking for good literature or interesting non-fiction - I like memoirs of non-famous people.  I don't like mysteries or popular formulaic fiction - and definitely not science fiction.)

5.  Take a bath.  (Showers require too much standing up but I have a removable showerhead for washing hair.)

Up until last weekend, that was all I could do. I didn't want to talk on the phone - or in person - because breathing was difficult.  Moving was difficult.  Living was difficult.  I couldn't answer email (I'm sorry) as it required more energy or thought than I could muster.)  I felt that my colon was still in danger of rupture.  I was very, very sick in a way I had not been before and in a way I find hard to describe. "Just snap out of it!"   Impossible.

My husband stayed home for a week from work, because I couldn't stand long enough to make myself some soup, and it hurt terribly to get more water or move around. I was extremely tired, slightly depressed and feeling like I was never going to come out of this disease.  The second week, my husband had to go back to work so I was alone.  By then, I could stand long enough to make soup and mostly, I didn't think I would die right then so it was okay for him to be gone all day. But, it was lonely and I thought this bed to couch existence would be my life until cancer got me.

We had no Christmas tree  - my family didn't want to get it without me.  I understand that,  but it was a burden on me to know that without me, they wouldn't celebrate Christmas.  We have all decided that after the holidays (when they are on sale) we will get an artificial tree.  As much as we love real trees, there may be times in the future when I can't leave the house again and they need to celebrate the holiday.  We can still get a real tree and choose the best as a family but if I'm sick, we can pull down the fake one.

And, you'll note my optimism in planning to be around for another Christmas. But, I no longer feel that is a certainty.

Eventually, the diarrhea slowed.  I was able to get around a bit better.  I could do a load of laundry, walk to the kitchen.  The bad pain went from all over my midsection to just the right lower quadrant.  It feels a lot like the pain you get when you run too hard and get that stitch, only mine doesn't go away.  The rest of my abdomen feels like I did a hundred sit-ups.

All the water weight from the hospital is gone and I weigh 90 pounds.  My stomach is very deformed but I'm not 9 months pregnant anymore - now it's like like I have an alien baby - a big swelling here, a concave area there, a tail-sized length over here.  The diarrhea has slowed to just a few times a day.

Two days ago, I got dressed for the first time.

This Saturday, I was able to walk long enough to get a Christmas tree.  I was nauseated when I got home, but I did it.  We decorated it yesterday.

Thank goodness for Amazon Prime.  I have almost all my Christmas shopping done.  I have to go to one store, which will be an adventure and I'm not sure I can.

I'm still trying to get an appointment with a specialist, although they are saying 3 weeks, which is completely unacceptable.  I saw a Dr. Nassir in the hospital and some sort of protocol means I have to see him again and he's not available.  I don't understand this because the woman on the phone told me there were 40 infectious disease specialists in their practice, and I don't care which one I see.  I saw Nassir in the hospital for maybe a minute and he only directed my care until the hospitalist took over.   I no longer feel like my colon is in danger of rupturing anymore but I am still taking vancomycin (my PCP kindly gave me six refills) and I want to know if I can stop taking it, what to do if the c-diff comes back, how long I'll be in this debilitated state, why it has taken me weeks to recover when others only take days, when I can eat a normal diet and when I can start chemo.  I told the appointment-setting woman on the phone to please call me Monday and if she couldn't get me an appointment in a reasonable time I'd go elsewhere.

So far, it's almost 1:00 and no call.

I've had a home health nurse calling me, and they said they were going to send somebody out, but they changed their minds.  That's fine with me as I don't know what a nurse could do for me, but I just called her to see if she can help me get in to see a doctor quicker.

This has been an awful disease and it's frightening being as sick as I was, and I don't think I'll ever be able to relate my hospital experience online - it was the worst thing I've ever gone through.  Having sepsis and never-ending diarrhea is not the way I want to go out, I can tell you that much.  I'm glad I'm recovering but I have had to tell my work I won't be back when I was supposed to in January,  and now my money will run out.  My job is only protected for a few more months and I'm not sure I'll make it back.

And, I've had to miss chemo, which makes me very afraid the surgery I had to remove my liver was for nothing.  We all know that metastatic cancer means there are cancer cells in other places, and without chemo to kill it I may end up right where I started, only this time without the hope of surgery.

But, I'm stepping on the path to recovery, however temporarily,  and the flowers alongside that path are lovely.   I'm able to function now, although at a very reduced ability, but it's better than I was two weeks ago, and I hope two weeks from now I'll have even more recovery behind me.  I'm so thin no clothes fit and I look scary but I hope to gain that weight back soon.

This disease left me with the knowledge that I'm very vulnerable.  I thought, in a cavalier way, that the liver resection surgery would surely give me years and years and I'd eluded death, at least in the short term.  I thought I might see my son go to college, my other son get married, maybe even see a grandchild.    I know now that isn't close to a guarantee, nor is it likely.  The life expectancy for a person with metastatic breast cancer to the liver is 2 years, and it is no longer impossible to believe that I will be gone next year.  It's made me sad and while I have not given up the fight, I know know there are powers beyond your will, mind and desire that are stronger than you are.

C-diff may not kill me in the conventional way, but since I can't do chemo, if I die of cancer in the next year, it will certainly have played a role.


  1. ODL Ann this is just a nightmare. I'm cautiously optimistic that you are feeling better somewhat - the fact that you felt well enough to blog speaks volumes. Keeping my fingers crossed that there are no more setbacks.

    Also I find it completely outrageous that you've not been able to get in to see the doctor. Might be time to get belligerent. Thinking of you, Rachel

  2. hi ann:

    thanks for the update...i've been so worried about you. turns out, for good reason -- i'm sorry the past few weeks have been so unremittingly awful. you will continue to be in my thoughts and prayers.

    (january mom)

  3. Thanks for taking the time for the update your blog... I'm sure I wasn't the only one waiting to hear that you were starting to feel better. I hope you continue to feel better so that you have the opportunity to celebrate this Christmas with your family around you and you're able to feel ok. Sending lots of love and wishes of strength and good health your way...

  4. Oh my goodness - what a horrible time you've had. I'm so sorry that you have had to deal with such a difficult illness on top of dealing with recovery from the surgery on top of attempting to get onto your chemo routine. I wish I could give you a big and gentle hug right now.

    On books - my better half gets e-books from our local library. Is it possible you might be able to do the same? You get the book for a set number of days... Sometimes you have to wait your turn... just like with hard copies. It's pretty awesome, and we've read a bunch of books this way.

    Also, consider trying out a new genre - something you thought you'd never read.... And consider trying out that genre in teen fiction. I've been delighted by many of the teen fiction books we have read. Some are just absolutely riveting! A ton of excellent reading - thought provoking topics - etc... Heck - you might even give the Twilight series a read! (Uhm - I loved the books... but I WON'T, I say I WON'T go see the movies.)

    Best wishes - thanks for updating your blog. There are bunches of us pulling for you ... wishing you strength and recovery.

  5. Ann, I am so grateful you wrote. I think about you every day. I am so sad for the nightmare you have gone through, and sorry I am not close enough to come and help you, do some things for you.
    I hear your strong spirit and mind, and am confident you will get on top of this hurdle as you have always done in the past.

    I continue to hold you in my heart and mind.


  6. Good to hear from you Ann - all of the girls at BCO are posting asking how you are - we miss you.
    I hope you didn't pick up this nasty disease from having the liver surgery.

    Sue (susieq)

  7. Aunt Leni here. Hope you continue to improve, so you can enjoy the holidays. I've got a few great books (all non-fiction) to recommend. I posted them recently to friends at the Environmental Volunteers (of which I am one). Besides the list below, check out "Packing for Mars," by Mary Roach. She answers all those questions no one ever asks about prepping for and traveling in space. Here's the rest of my list:

    "A Primate's Memoir," by Robert M. Sapolsky -- These short stories, by a professor of neurophysiology at Stanford, are folksy, funny, and fascinating. Sapolsky has studied primates in Africa for about 30 years (which have led to greater understanding of the role of stress in OUR lives), and has some engaging stories to tell about his adventures as a graduate student in Kenya, living with troups of baboons.

    "Feathers: The Evolution of a Natural Miracle," by Thor Hanson -- A whole book about feathers -- how they work, their use by people through history, how they evolved from reptilian scales, how recent fossil discoveries in eastern China are giving up information about their color and their existence on dinosaurs. I first read a library copy, then bought the book, so I can read it again.

    "The Big Oyster: History on the Half Shell," by Mark Kurlansky -- Pollution in estuaries is not a recent problem. The ups and downs oysters have encountered in the bays of the East Coast make a very interesting story. This book covers the history of the collection (and over-collection) of oysters, their role in people's diets, and the threats to their habitats over the years. Sprinkled in the book are recipes for oyster dishes. Who ever thought you could write an engaging book on the topic of oysters! (If you like this book by Kurlansky, I also strongly recommend two others by him - "Salt: A World History" and "Cod: A Biography of the Fish That Changed the World.")

    "Rosalind Franklin: The Dark Lady of DNA," by Brenda Maddox. Dr. Franklin made major contributions to the discovery of the structure of DNA. Her early death (before the Nobel Prize for that discovery went to others), her own personality quirks, and the difficult role of a woman in research science in first half of the 20th century may be why her name is not as recognized as those of Watkins and Crick. This book reads easily, and the scientific information is not too advanced.

    Best wishes for the holidays and 2012. I be thinking of you and hoping for a good report on your health soon.

  8. Hi Ann, it's JustAllie from TCF here!

    I'm so sorry you've been going through all this. Sending healing thoughts your way!

    In the meantime, have you read these two books yet?

    Almost French
    by Sarah Turnbull

    Living in a Foreign Language
    by Michael Tucker

    I found them at my local library, and they may be available for e-borrowing as well. Or I'd be happy to send you copies if you think you'd enjoy them! The Michael Tucker book in particular might benefit you, because his love of life and people and food are rather infectious.

    All the best!

  9. Oh Ann I'm so sorry to hear how ill you've been. I am keeping everything crossed for you for a full recovery, and am thinking of you. I hope you manage to enjoy Christmas and I'm so glad you are feeling a bit better. Ann in England. xx

  10. Ann,
    I'm glad you're feeling better and sad beyond words that this healing is so hard. None of it is right. Thank you for your writing, that is beautiful.

  11. This is cowboys2002 from TCF..

    Thanks for taking the time to update your blog with your status. Hang in there. We are all praying and wishing you the best.

  12. I am so glad to hear from you. I was trying to find you on twitter to see how you were doing. Slowly but surely you will get better. On books, check your local library for a digital collection. I have a color nook and take out books regularly for free. Just all the library reference desk and see if they have it and what it takes. free is a great price. Here I can get audio and digital books. Hang in there and keep blogging.

  13. So glad to hear you are improving - continue on that path!
    Call the doctor's office and raise he** - SOMEONE can surely see you.
    Get Social Security (I assume you are in the US) You are entitled to it, so use it.

  14. I've been wondering how you are, and am sad to hear things are not improving very fast for you. Like you, dealing with liver mets has made me realise just how precious each moment I have got left is. I have recently lost one friend and am about to lose another, both Inflammatory breasst cancer with liver mets like myself and it was scary how things went downhill for them.
    I hope you are feeling better soon and sending you hugs and healing thoughts all the way from New Zealand

  15. Crap. I think of you every day. I pray that you stay strong and kick C-diff in the but and get better................

  16. What an absolute nightmare. I just can't wrap my brain around that doctor situation--it's bordering on inhumane. I hope you get answers (and a damned appointment) soon.

    Sending some peace your way. Thanks for keeping us in the loop.

  17. Sorry to hear about your continuing struggle. I am continue to pray for you. I hope you have the best Christmas possible knowing that you are very loved!

  18. Ann, you are a woman of deep truth and I admire you for this. I know you will continue to get better and will make very effort to live as long as you are able to. It is not in our hands. I don't know who's hands its in, but that is all we can do. There is no choice with cancer. I hope your husband is holding up, this must also be very hard for him....and your sons...I hope you have a wonderful Christmas. No-one knows what is their tomorrow Ann. None of us.

  19. Glad to hear you turned the corner. It is a great feeling to finally get dressed and leave the house. Keep on the Vancomycin if its working for you. I believe it is the key to what helped me get over Cdiff (or whatever it may have been that turned my colon inside out) Fingers crossed as I'm having surgery 12.26 to have my left ovary removed because they discovered a "suspicious nodule" on it. Will the fun ever stop for us?

  20. I am sorry about all of the complications. I am glad you are regaining strength and feeling a wee bit better (and I am very happy you were able to go get that tree).

  21. Sue (ICanDoThis) here to just send hugs, and maybe a little advice.

    DH was on vanco for a month after discharge for second hospitalization for c. diff. But physical improvement was pretty quick; once he began getting up and moving, he seemed to gain energy daily.
    Hope this happens for you.

    As to books (never give old librarians an opening like this...) I don't know if you have ever heard of - it is a collection of over 36,000 titles that are out of copyright and have been digitized by volunteers - but I think the quality is better than that offered by many commercial publishers.

    As to just damned good reads - not from PG - King Leopold's Ghost - the story of the Congo under the Belgians - is an amazing work of biography. If you like them, the White Nile and The Blue Nile are older works, about a similar time period, and are also superbly written. Public Library would be excellent source.

    Dear Girl, please know that there are fingers crossed and hearts aching for you all over the country, and, I suspect, around the world.
    Please don't let this stupid bacteria defeat you!

  22. Thanks so much for updating all of us....there were a lot of worried people thinking of you and sending good thoughts your way. What you have been through is horrific, I am so glad you are on the mend now. Enjoy your Christmas and big hugs to you.

  23. I think of you often, Ann, and send healing thoughts and wishes your way. I am furious on your behalf that you're having to suffer like this. You are such an amazing woman.
    with love,
    a fan in the blogosphere

  24. Ann...I think of you every day and along with the BCO sisters, wish you well, really, really SOON! May you and all the sisters enjoy a better year ahead with few surprises. And if there's going to be any surprises...may they all be GOOD ones for all of us!

    I love the non-fiction books mentioned. All of Mary Roach's books are great...

    Another terrific book is Deborah Fallow's Dreaming in Chinese: Mandarin Lessons in Life, Love and Language. It's a small book and soooo interesting about Chinese culture. At times, hilarious!

    I know you don't want famous memoirs...but Carrie Fisher's new book, Shockaholic is TERRIFIC! That dame can DISH and boy oh boy could she WRITE! I just got the DVD of her Broadway show, Wishful Drinking that was based on her best selling book and couldn't stop laughing! Had to watch it TWICE...because I kept missing stuff because I was laughing so much! should hold off on Carrie Fisher until you feel just a drop better...because all of the "bellie" laughs might hurt now...

    Ann...just want to add about those doctors being unavailable...I always say... you don't want to be sick around the holidays because doctors take vacation with their families at that time of year as well. Hospitals are at reduced staff and only the sickest of sick get seen. Not.Good.At.All. But that's probably what's happening. And the only other worse time to try to see a doctor is the week FOLLOWING vacation...Hopefully you can see a doctor SOONER than LATER... I will continue to keep you in my thoughts and prayers.


  25. Yuck! My Honey's mother had a bout with C Diff while she was in treatment for esophageal cancer. She didn't speak much about what she was going through so I appreciate your very detailed account so that the rest of the world can better understand.

    I'm into historical fiction myself so I'm not sure I can help with your reading list. However, with Amazon Prime, don't you get Kindle books you can borrow instead of having to buy? There may be a limit on that, I know. My local library does e-book lending through Overdrive, which is a downloadable app.

    I hope you're feeling better in time to enjoy the holidays.

  26. My thoughts and prayers are with you, Ann. What a horrible thing to go through. You have many, many people pulling for you.

  27. What you have gone through is just terrible. Utterly terrible. I'm so sorry. I'm glad to see you are feeling somewhat better and knowing you are blogging again is a very good sign! You have been missed. I agree with Cancer Culture Chronicles, maybe it is time to get belligerent about that appointment. I mean how long are they going to make you wait? By the way, I think it's amazing you have a tree up at all and are finished shopping. Best wishes for continued improvement and hang in there, Ann. Hope you have a pleasant holiday.

  28. Ann, I am so sorry to hear how much you have been suffering. Is there a feisty friend or family member who get get belligerent on your behalf with these nurses and docs? Because it is mighty tiring to do all this alone and in a weakened state. Put in a plea call to your most outspoken compadre stat! Hoping for continued recovery for you. Slow and steady. And PS YES your local library is a great resource for ebooks!

  29. Sending warm hugs and thoughts Ann. Glad to hear that the worst part of C-Diff is behind you. AFA the rest, I dont know what to say.

  30. Thinking of you - daily....Hugs from Oregon

  31. Forgot -- Read Betty McDonald's Onions in the Stew and The Egg and I. They always make me laugh when I'm in the winter doldrums...... Kaye Mt Hood - Oregon

  32. Ann,
    So glad to see that you appear to have turned the corner in your healing and I'm with everyone else in hoping that things gather momentum and you're back to your old self asap.

    You're an inspiration to many you know, so keep that kick ass attitude going. I know it's hard when you've been knocked down as hard as you've been but attitude is a choice and I know you can do it.

    Wishing you and your family all the very best for the holiday season from Karen in Australia.

  33. Hi Ann. I just shed a few tears for your misery and your grace. I hope there is some special power in prayers made at Christmas. There will be many for you, I know.

  34. Hi Ann
    A friend sent me over to your blog. See I am a librarian here in Ohio and my friend wanted me to let you know that you can download free books for your kindle from the Sacramento Public Library. 10 bucks a day is a lot you said, yes? And Im not talking about 'classics' although they are free all of the time. Just like the physical library, you can download a book for a 2 week period and there are more and more Kindle titles out there all of the time.

    On the front page there is a box called 'download ebooks and audiobooks'. Go there and read up on the instructions. Youre lucky that your libraries interface is super smooth. If you need to ask me any questions feel free ( or contact your local librarian. As long as you have a library card, its all for free - as much as you can read!!! Enjoy! All the best! From Sue J.

  35. Hi Coolbreeze - You are awesome - you have such determination. Best wishes for your continued recovery. One of my favorite books is called 'The Last Step: The American Ascent of K2' by Rick Ridgeway - a very inspiring adventure and survival story. Keep getting stronger day by day. Glad that you and your family got the tree up!

  36. Glad to hear you have turned the corner. 3 weeks to see a doctor for a person in your condition is unacceptable!!! Hope you continue to get better and enjoy the Holiday.

  37. Thank you for the update Ann. I hope you are getting stronger everyday. I will keep sending you positive strong light and prayers.


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