Pages

Tuesday, February 26, 2013

Decline

Today, the gals from Capital Cleaning are here for my Cleaning for a Reason session.  They do a great job and I am going to hire them when my free sessions are over, otherwise the house will be covered with dog dust and male negligence.   If you are in Sacramento and are looking for a housekeeper, please consider using them.  My understanding is that these cleaning companies have to actually PAY the charity Cleaning for a Reason, and if I can help them recoup that money, I would like to do it.  Tell them Ann Silberman from But Doctor I Hate Pink sent you. They'll know.

I've talked to the owners several times - they call ME to remind me of my free appointments.  So they are amazingly caring; it doesn't get better than that.

Anyhoo,  my dog Trista just turned one yesterday, and she's still is so excited about others coming in to the house that she buzzes around them like a fly around a sugar cube, so  I am currently locked in my bedroom with the dogs to allow the ladies the ability to clean without a dog trying to help.

Cherry would sniff them and calm down, but Trista is so bad that she never leaves visitors alone.  She actually sat on my 72 year old cat-loving uncle's lap when he came to visit.  In case you are a new reader, Trista is a greyhound who weighs about 80 pounds, and if she stands on her hind legs, she can put her front paws on my 6'2" husband's shoulders. She is on the taller end of that breed, and reminds me of a skinny lady in stilletos.   She insists on attention at all times from everybody, kind of like I imagine Kim Kardashian does.  If she could get breast implants to make people look at her, she would.  

I grabbed my laptop, so here are some random thoughts while I'm trapped in my beautiful bedroom, the dogs whining for me to let them out so they can attack the dangerous vacuum cleaner:

I used to participate in cancer forums but stopped for several reasons.  One reason was that people kept dying, people that you know and talked to and liked.  They'd suddenly stop posting, and anywhere from two weeks to a month later you'd hear they'd died.  And, I would always think, "but I didn't realize they were that sick" and my next thought was "it could be me next."

Which was stupid, my God, the reason we were on the forum to begin with was we have terminal cancer.  We are that sick, it could be me.  You just can't tell in black and white and by reading posts how long somebody has.

I don't know what happened to them in the two weeks to two months of silence.   Sometimes we'd see a post out of the blue "I'm still here but I've been in the hospital/sick/in pain/unable to write."  Sometimes there would be nothing.  Sometimes there would be a post from a family member saying "Please pray for my sister/wife/mother as she's not doing well but says she misses you all."  Some died suddenly of chemo-related heart attacks, some of failed organs and some?  Just plain cancer.

Those interim weeks/months are a mystery to me.  I have read a lot about how people die of cancer and what happens physically, but those articles concentrate on the last few hours.

Nobody talks about the great decline that happens first.

We all have this fantasy that we will have used all our treatment options and have to face that it's the end and there is nothing left to do.  We think that everybody will know when it's time, and there will be a parade of people in to say good-bye.  You are weak but conscious, in your bed but aware, can turn the morphine off and on, and you can say "I love you" one last time.

But that doesn't seem to be the way it works for all, or even most.  My first bout with c.diff taught me that one illness can take me in a few short hours.  I was very close to dying from that disease and have never forgotten it.  I was pretty much fine one day and nearly gone the next.

Cancer can take you at any time.  If if is a slow decline, whatever cancer you have can cause some problems at the end.  When it's in the liver it will cause a toxic build-up in my blood and I probably won't know anybody at the end, I'll be out of my mind, which many people think has already happened, har har.   I certainly don't want people seeing me like that so, my friends, you are warned:  my husband has instructions for no end-stage visitations.   This is why I urge people who want to visit their loved one with cancer to not delay, as you may not have the time you think you do.  Do it while they are still okay if you want to see them.

Many of you know I have been sick again.  I have blogged my whole experience thus far, and I don't want to leave mystery, so I'll go into detail about how I feel, just like your grandmother when you ask, 'How are you?" and she starts to tell you about her bladder problems and how the hysterectomy she had in 1957 is causing issues.    You are going to get it all.  I mean, I am assuming you are reading this because you want to know what it's like to be nearing the end, so boring as it is, sometimes I have to write about how I physically feel while I am able.

Gradually, over time, pain has increased.  I can feel my liver now, like a big soggy wet sponge lying in my body.   Inside that sponge, is a burning hole, like a baby sun, that I imagine is the cancer.   Livers aren't supposed to hurt until the cancer gets big enough to stretch the lining but it would seem my tumor is near some vital structures (which is why they can't ablate it again) that cause some pain. When I take a deep breath, I can feel the sun expand like a little nova.  And, the regular, constant pain is like I was kicked in the ribs on the right side, an experience I haven't had since I was a child but remember well.   Now, this is not major pain, it's not a super nova; I notice it, but it would not keep me from doing anything.  It's just there, the kind that if you as a healthy person had you'd think "I need to tell my doctor at the next appointment" but then when were were on the exam table, you'd forget.

The pain that does bother me is whole body pain.  I ache from head to toe, all the time.  Probably from years of chemo.  I take hot baths and dilaudid and oxycontin, and frankly, the baths do a better job than the drugs, although I'm not going to skip my medicine to find out.    I should probably up my meds but I worry about getting used to it and it not working at the end.   (I can skip days with no problems now if I am not in pain but addiction is not a worry of mine at this point.)  Save 'em for when you really need them, is my feeling, so I take my regular pills and no more.

I can't expect to be pain-free anymore.

Because of the bone pain,   I am looking forward to spring when I am not cold and I can sit in the sun.  Probably with a fringed afghan around my hunched shoulders, my grey hair dully shining in the sun, my skinny little arms crossed as I hold the afghan closed. Late stage cancer is a lot like you imagine getting old is like.

I also have a lot of lower back pain, and who knows why this is?  I do have osteodegeneration as do most people my age.   Anecdotally, cancer patients frequently end up with back and hip pain post-chemo and naturally, they always think it's mets.  But, it's usually post-treatment pain.  It does go away but it can take quite a while.   I am not "post chemo" and never will be, so I have to live with it.   Even then, while it would limit some activities, like going to Disneyland or sitting for a long time (say on a plane or car), it is still manageable with hot compresses and pain meds.

More difficult: neither of my shoulders have healed from my frozen shoulder situation I got years ago after my mastectomy.  Frankly, I don't think they ever will heal now. I get an occasional cortisone shot which eases up the pain and increases my movement but I still have trouble sleeping on my sides.  I can only sleep on the right side, which might be a problem later since the liver is on the right.   And, being unable to use my shoulders properly has caused my back muscles to tighten up too, so I can't sleep on my stomach without cramping.  The whole shoulder thing has probably increased the rest of the pain.

I am nauseated most times although it's light nausea, like an early pregnancy.  I don't feel in danger of puking - usually.  Gemzar changes that and intensifies it as does some bad smells, but I've been too sick to get chemo for a few weeks so the nausea is down to "you're having a girl" levels.

I have no appetite at all.  I used to be a foodie and now I don't care about food at all.  I would not eat, if living alone, mainly because I'd forget. I have no hunger and in fact, I always feel full.   I also have pain in my stomach, for some reason another little sun.  And, I have some minor reflux, not the volcanic lava rush I got on Navelbine but a gentle acid wash that a tums takes care of easily.

I believe in family meals and we still sit down every night together.  People are kind enough to give us food and maybe once a week I even have energy to cook. The rest of the time, my husband, who works until 6:00 and is missing the chef gene heats up pre-made meals from the grocery store when he gets home.  When we sit down as a family each night, I usually eat.  I have no desire for it but since we are there, I will take a plate and I manage to put some down.  That has kept my weight in the 100 pound range which about normal for me although I lost 4 pounds with my latest illness.

I have almost no expense of energy so it doesn't take much to keep me from losing weight.

The worst is fatigue.   I can't describe the fatigue I feel.  It is nothing like healthy people tiredness.  It is nothing like the fatigue I felt when pregnant, when I had the flu, or stayed up all night watching a Marilyn Monroe marathon on TV (or later, rocking a screaming baby).  It is oppressive, this tiredness, like swamp humidity.  I could sleep for 16 hours and wake up exhausted and after a cup of coffee, need another 16 hours.    Because I have awakened,   I force myself to get up and make my coffee but even that seems too hard these days.  My body is physically weak and standing in the morning is hard, although I gain strength later in the day.   I sleep hour after hour.  I take Ritalin to keep my eyes open; without that drug I would be like Grandpa Simpson or your heroin addict sister, nodding off at special events, mouth open, a slick of drool appearing at the corners, eyes rolling.  This is the symptom that keeps me from doing things.  I am just too exhausted.  I don't even dress most days.  I have sweats I wear, those velour track suits (Juicy knock-offs) that you can wear from morning to morning -  which used to be unthinkable for me, who had enough outfits to wear something different every day.   Now I get dressed one day a week - chemo day.   The last time we went on vacation, to Arizona, it was fatigue that kept me from having dinner with the family and doing things in the morning.  I have about 6 good hours in me and that is it and these days, without Ritalin, those six hours are zero.

My interests are declining.  I used to read the paper cover to cover.  I now skip all the politics, most of the regional news. It doesn't feel relevant and I don't want to get annoyed at those stupid politicians.  (I do live in California, lots of reason to be annoyed.)   I read Dear Abby, Carolyn Hax, local advice columnists,  and the funnies.  Instead, I like to watch Andy Griffith and Duck Dynasty.  TV will always make me happy, as will a good book although I usually nod off after a page or two now.  Oddly enough, all my fashion magazines are unopened. I loved clothes and style.  When my latest magazine arrived, well, that was just a good time for me.  I'd pour myself a glass of ice water and sit for hours flipping through pages and looking at beautiful things and seeing outfits that I could put together out of stuff I had.  Now, I have months' worth still in their plastic wrappers, unread.  I no longer want to shop, because I go nowhere, and don't want to make people have to throw away even more of my junk later.

Shopping is no fun when you don't have a future.  The fantasy that I can wear something cute is just gone, I am only about comfort and stuff not touching my stomach. I am trying to give away special clothes to people who can use them.

You may know I have been sick and I don't know if it's cancer or if it's another round of c.diff.  I had some (TMI ALERT) loose, smelly stools and felt bad, a sign of c.diff and pretty impossible naturally with all the chemo and pain meds I take and the constipation that results.  Let's just say that Senekot has been off my daily med list for a while.  Then I suddenly was unable to get out of bed, my legs like a bowl full of jelly but not as jolly.   I stayed in bed, barely awake for several days, even during the end of the Healthline contest and when Derek set up the other donation event.  I have my phone in bed with me and bleary-eyed, I'd check in but the interest was gone.   I was just too sick to care.  I was fine one day and too ill to wake up fully the next.

Which I imagine is why the posting on forums stops.  It just is not top priority when you are feeling that bad. Nothing is a priority but sleeping.

Without a diagnosis, which is a long story I won't go into except to say this time I tried to get the proper test for a diagnosis, I started taking vancomycin on my own volition.  Again.  Either it worked or I would have gotten better anyway.  Either way, I got up and about again and went to the doctor.  He was stone-faced, my oncologist.  He didn't register any annoyance about my doctoring myself with powerful drugs like leftover vancomycin at all, which was quite kind of him as I bet he felt it.  He just told me to finish the course and,  like every doctor I've ever met, he would not guess what else could cause an illness like that, if it was c.diff or if it was cancer symptoms.

They must have a "Never Guess 101" course in doctor school.

I know I was a bad girl for staying home and treating myself, but my rule is I only go to the ER if I have a fever, and I didn't.  Nobody wants to go to the ER, not even the mentally ill.  And, frankly, I wasn't strong enough to get in the car and if they couldn't see me right way, I wasn't strong enough to sit and wait.  I didn't want to call an ambulance and alert the neighbors. So I lay there.   The one and only time I needed to go to the bathroom, my husband had to almost carry me, my legs were so weak.  I truly thought that this could be it, the big "it"  and I wanted to be in my own bed.

So anyway, clearly, I didn't die. I perked up on the vancomycin (or not), got out of bed, ate some yogurt and popsicles and seemed on the road to recovery.  Then yesterday I went down again.  Then I went up again.

So, who knows?  My current condition is extraordinary tiredness, various pains, weakness in the legs, and that's on a good, regular day.  On a bad day, I sleep.  My husband has a hard time even trying to wake me.

So, maybe that is what these women go through before they die.  Maybe the periods of staying in bed are more frequent and the periods of "health" lessen.  Maybe not.  Maybe they just don't post.

So there are my aches and pains, now don't you roll your eyes at Grandma!

Hope:  There is good cancer news out there:  the long-awaited TDM1 has been approved for late stage metastatic HER2+ women in which herceptin and a taxane have failed, which describes me and then some. It's new name is Kadcyla, which I'll never remember, having followed it as TDM1 for years.  I asked my doctor about it a month ago, knowing it was about to be approved, and he said he'd put me on it as soon as it was available.  I'm not sure that he knew the costs were going to be $100,000 a year though.  We'll see if I still get it, and if I can benefit.   It it works, which it does for about 1/3 of women, it gives a median of 9 extra months of progression-free survival, which is invaluable at my stage and might mean I can make it to my son's high school graduation, which is my goal.  A goal which used to seem easy and now seems almost impossible.   But TDM1 doesn't work for everybody and after my liver resection failed, as has every chemo I've been on, I am not going to get too excited.  It is nice to have something new though, and apparently easier to take than the things I've been on and that is wonderful.  I'm kind of sick of chemo and don't seem to tolerate it the way I used to.

Maybe with TDM1, I can back off this decline, even if for a short time. My nephew is having a baby and I am very eager to go see the newest member of our family when he or she is born.  Right now, I simply can't travel, and I am sure they won't travel with a baby soon enough for me to be alive to see it.   I'd also like to see my cousin's daughter's Bat Mitvah.  I've never been to one and she is a darling child and it's important to her.  I'd love to be there to support her.  I was also invited by the City of Solvang to visit, more on that later.

But, I can't think about these things as they are amorphous, not reality for me (being hundreds of miles away each), dreams that may not come true.

Ah!!!  The ladies from Capital Cleaning just left and my house smells so clean and fresh!  It is so nice to have everything sparkling, even if it only lasts a day.  My son came home from school and asked for an omelet and I had the strength to make him one.  My friend Kathy had brought me homemade food so I have something to pop in the oven, and we will eat real food tonight.

Life is good.


78 comments:

  1. Aw, Ann. I wish that I had something helpful to say. I don't. I wish that I had something funny to say. I don't. I hope with every fiber of my being that this is a bump in the road, a reaction, a virus, something, ANYTHING, that you will find yourself rebounding from soon.

    ReplyDelete
    Replies
    1. I hope so too, Debby. I just hope they can get me on TDM1 and it works. I am not sure I can do much Gemzar at my current state of debilitation. But I "look good" still, I hear. :)

      Delete
  2. Ann,

    I've been thinking of you and hoping the contest winning would be a spirit booster.

    I just celebrated my 1 year anniversary after finishing treatment for anal cancer and I've let my hair color return to its natural gray. Your beautiful hair has inspired me and I don't plan to use color again.

    I send infinite wishes for your comfort of body, peace of mind and calming of spirit.

    ReplyDelete
    Replies
    1. I found some websites about grey hair, silver sisters or something like that. You need to use a purple shampoo to keep it shining. I liked my hair when it was longer but don't like it this short. It won't grow though with all the drugs I'm on.

      Congratulations on your year. I hope you stay healthy for the rest of your life. Don't live in fear!

      Delete
  3. You are a hero to me...hugs

    ReplyDelete
  4. Ann, you are such an inspiration to all Stage 4 metastic cancer thrivers. I look forward to reading your posts and miss you when you are not up to writing. I hope that this new drug allows you the to see the milestones that you wish and so many more. XXOO

    ReplyDelete
  5. I hate that you are having such a rough go of it right now. Hope you get to feeling a bit better and can do the TDM1. Hugs and blessings!

    ReplyDelete
  6. Oh, Ann, thank you for sharing all of that. I've often wondered how it feels to be in the late stages of cancer. No one ever says. I think everything is easier to face if you know what to expect. That said, I'm so sorry for your suffering. I know you're not a believer--but I am--and even though you may not believe in God, I know he believes in you. Thank you for what you are doing for all of us. I hope you can get on the new drug soon.

    ReplyDelete
    Replies
    1. Your first lines and exactly why I intend to keep this blog up until I am unable to do it anymore. I hate writing about physical stuff but that is what I deal with. I've documented everything I experienced from early stage and don't want to quit now. So if it's not always as cheery as it used to be, it isn't because I am sad or depressed. It's just not a cheery subject.

      Delete
  7. I think of you every day Ann with love and hope. I wish I had something witty to say but this post makes me feel not witty at all, it makes me so very sad.

    I pray you can get on your new drug and that it will at the very least help you to get some energy back and get you to Graduation. I pray for that for you every day.

    You are my hero Ann,
    Love and hugs,
    Tracey

    ReplyDelete
    Replies
    1. I don't want to make you sad. I don't feel sad. Say your witty thing! I am only sad for my kids, who can't get into the place I am with this. I hope I can help them realize this is the cycle of life and not unnatural.

      Delete
    2. Yes, it is the cycle of life but it's far too soon. Our parents are supposed to live into their 80's and even then we are heartbroken to lose them.

      I think of you and your family daily and pray for strength for all of you when you need it most.

      Much love Ann,
      Tracey

      Delete
  8. Your gift of words is a gift to all of us. I do hope you can do the TDM1. I think of you often and am so glad that you won the Healthline contest. Life is good even when we think it looks bad. Thanks for showing all of us that. I hope warm sunny California weather shows up for you soon.

    ReplyDelete
  9. Thank you for your honesty. You're facing this all with such grace and humor. Fingers crossed for you getting TDM1 and it giving you the extra months you need.

    ReplyDelete
  10. Ann, I'm so sorry you are going through this. I began reading your blog right after my mom was diagnosed, in March of 2011. She was 74, and had been a heavy smoker her whole life. Right up til the Saturday before she died on Thursday night, she smoked, while on oxygen, complaining of the pain everywhere. She didn't write about it as you are, and so I'm both grateful and horrified at what you are going through. Grateful because you are totally describing your reality, and yes, I wanted information. Horrified, because oh lord, no one should be dying like this, like you are; your voice is so clear and honest and vulnerable and loving. I I am praying for you, daily. You've really touched a lot of people, and you won't be forgotten.
    Eve

    ReplyDelete
    Replies
    1. I'm very sorry for your mom, Rosalita. I don't know about your mom but I am not suffering or anything like that. I am in pain but I've kind of gotten used to it, if that makes sense. It came on gradually enough. I probably complain to my family too, and walk slowly and stuff but really, it isn't anything to be horrifed about, at least with me. I know that when it gets time, they'll have the big gun pain killers. I just don't want to habituate myself more than I need to for when I need them. But who knows, maybe I won't. You aren't supposed to have a lot of pain with liver cancer.

      Delete
  11. Ann, I only recently found you (December actually-the month of my mom's recurrence). You are an inspiration. You've given me the gift of facing my fears for my mother and myself with some tears, yes, but the humor and the honesty...I am like a moth to a flame. I look forward to each post. I imagine like you have with me, you've had and continue to have a huge impact on the lives of many. I feel as though your family and I am always rooting for you. Much love and peace and improved health I wish for you.

    ReplyDelete
  12. Thanks for the info and am sending lots of love and laughter

    ReplyDelete
  13. Ann,

    Many positive thoughts and prayers to you. I'm hoping your doctor will get you on TDM1 asap. Hopefully, you will wake up tomorrow feeling a lot better.
    Just like most that read your blog/facebook you have been an inspiration to me also. Looking forward to your next post.

    ReplyDelete
  14. Hi Ann. I'm also thinking of staying with the grey that is growing back and will be trying for the silver fox effect I think!
    I'm also hoping with everything I've got that you can get on the TDM1 and that it gives you the time that you need.
    My milestones too are built around my son - but there's just not enough time to see all the occasions I want to share with him. I just hope that he will always feel my spirit around him. I'm hopeful that when you have so much love for someone then they will still feel some of that love for ever more even when your physical presence is gone.
    Hope you can build up some more strength so that you can get some enjoyment out of the things you love. X

    ReplyDelete
    Replies
    1. I think they will but I think their grief has to fade a bit. Mom mom has been dead about 2 years now and my dad says he feels her presence still.

      Delete
  15. Thank you for sharing ideas and yourself with us, Ann. I do hope you get the TDM1 and that it works for you. I love your positivity! We send you our wishes for strength. Love, Laura x x

    ReplyDelete
  16. Oi !! I have to say my heart leapt when I saw there was another post from you in here, because I only found you recently, and to think that you'd become too sick to come and chat to your " girls " (and guys ! lets not be sexist ! ) in here.. well - that would be too upsetting to contemplate!.

    Damnit girlll.. What was that doctor about huh ? . telling you to finish a half finished course, and saying " toodle-pip " .. and waving you out the door.. " ahem!! .. another script perhaps ? to make sure no residual wee f'ers overstayed their welcome ? "..

    I am praying my little aethiest butt off that this TDMI presents itself to you STAT.. so that you can take it, and be one of the 1/3 of women it has some real and measurable effects on, and that it gives you the time you need, and THEN more.. (Of course I'm hoping that the fact that I " might " have said a prayer or 10 , doesn't actually jinx you , cos, I was even too afraid to set foot in a church to get married, in case the roof fell on me, but you know what I mean right ? )

    Anyway luvvie (Us aussies again).. Sleep is good!.. If you need it - do it.. Just so long as it keeps you with us.. ok ?

    ReplyDelete
    Replies
    1. You are too funny. :) Nah, my doctor is awesome. I did ask for the test on the 6th but some office mess-up happened. I followed up once but they hadn't turned their phones on after lunch so didn't get through. And then didn't try to follow up again until the day I went down. They rushed it through but it was too late, I was too sick to take the test. So I started the drugs, nothing else to be done in my view. Once you take the drugs, it invalidates the test so we can never know what it was.

      I love that you pray your atheist butt off. I need to steal that line. We atheists have those same strong hope emotions but no way of expressing it. :)

      I have chemo today so I'll see if they've ordered the TDM1 yet.

      Delete
  17. I hope you get the new treatment and reach your goal of seeing your son graduate. I'm glad you won the contest. Continue to fight on!

    ReplyDelete
  18. You are still my hero. I love you, Ann.


    Denise

    ReplyDelete
  19. Thank you for writing this blog. I lost my husband to cancer and reading what you're going through validates many of the things I thought he was feeling, but he just couldn't or wouldn't articulate. May you feel peace and happiness for the rest of your time.

    ReplyDelete
    Replies
    1. I am very sorry for your loss. My big fear is an accident or cancer happening to my husband. Especially now, when I need him so much and when our son isn't raised. He is the one with cancer in his family, not me. Anyway, I wish you the best as you try to manage this loss.

      Delete
  20. Thank you for the honesty in describing what you're going through. I have to be real in return: this just sucks. I hate that you're going through such hell. Love and good wishes.

    ReplyDelete
  21. Ann, you are so real and so honest. Thanks so much for sharing what has been such a difficult time for you. I hope the TDM1 will be affordable and give you that boost you need to see your son graduate. I've only been Stage Iv a year and my goal is the same --my son's high school graduation (he's 10 years old now). My prayers and love are with you.
    Margaret

    ReplyDelete
  22. My prayers continue to be with you. I will pray for the medicine to be available and to work well. I am steering everyone I know to buy from your amazon link as well. Everyone, if you buy from amazon at all, go thru her home page, it will raise money for Ann and her family.
    Prayers and hugs,Lisa

    ReplyDelete
    Replies
    1. It's working Lisa, I had a $100.00 this month! Thank you so much! My son uses Amazon for textbooks and is always asking if he can buy a new one, now I can say "sure." :)

      Delete
    2. Wooo HOOOO! I purchase EVERYTHING for my work ( i work in a large church) thru your web site, and I will continue to do so until it is no longer functioning. I am so blessed to hear your son can buy books and that is really is making a difference!! Made two more large purchases today!!!! Will keep them coming, and EVERYONE please use her amazon link, we all love and respect ann, lets help her feel security for her family too. We can do it!!

      Delete
  23. Damn. Cancer is the most hateful thief that ever there was. My heart just hurts for you and your family, Ann. I watched my sister go through this final part of the journey eight years ago, when she was 44. There were better days, and worse days, and she was able to stay with us until Christmas and see her son open his presents. I think it was an act of sheer will that got her that far, as she died two days later. It was a quiet and peaceful death, at home, with all of us around her. I've been on the border twice myself in the last few years, and both times were at the hospital. I hope when my time comes that I can avoid that. I felt like it was better for my sister to be home with her family. I am not exactly the praying type, but I am sending out a request to whoever organizes this universe to give you more time, less pain, and the chance to see your son graduate. I don't think that's asking too much.

    ReplyDelete
    Replies
    1. I'm sorry for the loss of your sister, and I"m sorry you are dealing with this too. Thank you for sharing that it was quiet and peaceful for her. That's the way I hope to have it too. I think that's what we all hope, isn't it?

      Delete
  24. Thank you for sharing. I wish you weren't going through this and sorry that you don't feel well. I'm praying for you and your family and that you make it to all your goals.

    ReplyDelete
  25. Thank you, Ann, as always. Information is power, and you empower so many of us by sharing your day-to-day experiences. It helps me to feel prepared. Whether I am or not, of course, might be another story. But for now, it helps to feel that way.

    Many thanks.

    ReplyDelete
  26. I check your blog everyday. I am so sorry that you are suffering. I appreciate your honesty in describing what you are going through. I am stage IIIA diagnosed June 2010. I followed your journey on BC.org. I always found (and still do) find your comments helpful. If I develop mets, I will reread your comments. I'm not sure why, but they help me now. I think the known is somehow less scary than the unkown - even when it is almost unimaginable difficult.
    I'm also glad you won. I voted for you everyday.

    ReplyDelete
  27. Thank you all. I read every comment and appreciate them all. I am going to respond to a couple for points I want to clarify or something to add, but I do read every one and am amazed at your kindness, writing to me the way you do.

    ReplyDelete
  28. Oh Ann, I am so sorry you are going through this. I am at work, scared, worried and sad. I was diagnosed with stage 2 breast cancer at 32 years old in January 2011, so not too far from my last chemo. I just found this blog today and have read from begginning to end. I share many of what you are going through, thank you for sharing and putting into words your experience. I love reading your blog, your humor and spirit just shines through. I hope and pray that the new drug is your miracle drug. I am deeply touched by your writing and strength. And I hope that you will find a bit of comfort in that your blog has brought me some laughter and comfort. Good luck and thank you.

    -Kim

    ReplyDelete
  29. You have come to mean a lot to us, Ann. As a metster, I count on you telling it like it is... even when things aren't good. Best wishes, Kate.

    ReplyDelete
  30. Please help me to understand why we need to put it all out there. And why people have an insatiable appetite to read every last detail of what it's like to have a terminal illness and in the stages of dying. I had breast cancer. I say had because I will never consider myself one of those women who is identified with their disease. I was diagnosed with Stage 11B - Grade 3. I had a mastectomy and that was it. I refused chemo, radiation or hormones. I always understood that chemo, although prolonging life a bit longer would eventually come back to bite us in the ass. If I'm going to die, then I will do it privately, the way people used to do it.

    ReplyDelete
    Replies
    1. Congratulations on your "no fear" attitude. I think that is very healthy. I hope it never comes back.

      I think you are lacking in your death history though. Books have been written for and by the dying since books were around. No, this is not a book, it is the latest generation;s form of book. The most famous in our older generation is "On Death and Dying" by Elizabeth Kubler Ross, written in the 60s, but you can go far back to find more. Check into Osler's "Study on the Act of Dying" from 1900 or go even further back of you like, you can google as well as I can. Death has been a subject of fiction and non-fiction since the beginning of the written word.

      Death was never a private affair - it was a community event, with people bringing food, coming to visit, maybe building pyramids. Only because we are so spread out, the community is much larger, thanks to the internet.

      We all deal with this disease in our own way. I commend you for turning your back on it (although am perplexed why you may be reading my blog) but I suspect you don't know what you'd do if you were actually dying. Perhaps not blog, perhaps keep it entirely to yourself. But I am guessing you'd involve community in some form.

      For me, I started this blog when I was early stage, like you, to keep friends and family informed. It has morphed and now people seem to take comfort in it. And, maybe there is some curiosity too - but why does death have to be a taboo subject? I don't feel it does or should be. It is a natural event that everybody is going to experience, including you (although I hope not from cancer). You will deal with it as privately as you feel comfortable with, and I will as publicly. There is no right or wrong about how each individual handles it.

      I do think it is such a feared topic in our culture that I personally think that is unhealthy. So my goal now is to demystify it. But you don't have to read my words, and in fact, I suspect you have expressed your disgust and will never see my response.

      If you do, I wish you nothing but the best and I hope I cleared it up for you. I might help if you started my blog from the beginning.

      Delete
    2. I was kind of shocked at this letter as well. The fact is that dying was a huge event, and it was a community event. There were many, many traditions and ceremonies to go along with it. Families gathered together for Sunday afternoons at the cemetary. It never was a 'private' thing. You sound like a very isolated person, and perhaps this is your nature, anonymous, but it is not everyone's nature, and so you should do what is comfortable for you, whilst allowing others to do what is comfortable for them.

      Delete
    3. Ann, I was the anonymous writer you began with the following: Please help me to understand why we need to put it all out there. And why people have an insatiable appetite to read every last detail of what it's like to have a terminal illness and in the stages of dying.

      Debby, you are correct in the fact that I am a very isolated person. And the truth is that I would gladly trade places with a terminal cancer patient. Ann, you are so lucky to have so many people who love you and would do anything to keep you alive. I've never been one to ask for help, and in the rare instance I have, I haven't received it. Honestly, there are those so blessed that they can feel confident leaving this world happy that their life was wonderful. I mostly dealt with breast cancer on my own. Many of the members of my immediate family are in the medical profession. They provided me with lots of information but that's not exactly what I wanted. If I told you that there were no tears, would you believe me? There weren't. I didn't even cry. And so I don't really care if my cancer comes back. And if it did, I know I would just have to let it runs it course until I die. So it all comes down to my being very envious of all the love that surrounds you and anyone who is in your position. I just feel as though I'm in limbo. If I knew that my cancer metastasized, I would do many things I've never done. My life isn't as awful as some people and not as good as others. I am not a young woman (in my sixties)and I've had some wonderful years and some not so wonderful. When you suffer from depression, it's a whole different ball game. I have done antidepressants for some years, but it just wasn't for me. Fortunately, my depression is manageable. I made a lot of wrong decisions which caused me to move from place to place, but you know what they say. "Wherever you go, there you are." I also made many wrong choices when it came to friends. A therapist once said that my friend picker was broken. So true! But Ann, I think you are amazing! My original words were written because of how unhappy I was/am. Perhaps when my time comes, I will be as blessed as you to be surrounded by so many people. Keep on keeping on. You are so strong!

      Delete
    4. Anonymous, I've been praying for you today. Thinking on you, feeling sad for you in your isolation. I am glad that you wrote back. (Sorry, Ann, I'm hijacking your post). You have had an experience that you could use to help others. Volunteer. Put yourself out there, even if you are doing just tiny little things in your little corner of the world. Each day make a decision to do one thing (at least) for the sake of others. Be kind, because you know how much you would appreciate kindness. It's a start. You've been given your life for a purpose.

      Delete
    5. I'm so sorry, I just saw this post. Anonymous Writer, please contact me privately at butdoctorihatepink AT gmail.com. I would love to talk to you.

      I knew I hit some sort of nerve and now I understand. And, I would really like to share some things with you - despite what people think I do not share every single thing on this blog as do believe in some things being private, so I do have a way to understand some of what you are feeling.

      It is a true gift the way people have surrounded with their love me now. I am as surprised as anybody but I will never forget it, or be able to begin to share my appreciation. I was never Miss Popularity. I chose a good husband, and raised nice children but for ten years before that I was a disaster. I have only one close friend who lives hundreds of miles away. I never expected the outpouring of support and love that has surrounded me with this experience and was raised to think I didn't deserve much. and I have no doubt that the people in your life would do the same for you.

      The hardest part is accepting all these gifts that people want to give you. I have always been the definition of independent woman, never needing anybody, sort of a control freak and always doing things by myself. (I still go to chemo by myself and only won't on days I can't walk or drive). Cancer has taught me that people want to give, that they want to help, and you are giving them a gift by allowing it. It seems counter-productive, but when you do something for somebody else - you feel good, don't you? Well, it's the same thing. It's just harder when people like me (and possibly you) have a wall around them and don't believe they are deserving. But you are.

      Cancer has helped me tear down the wall. And, I would like to have a private conversation with you more, if you would like to. So you know how to reach me. I'm very glad you wrote back. *hugs* to you.

      Delete
    6. Anonymous,
      Ann can help you a lot, but only to a point..as she is human. Albeit a little bit of a snarky angel. I too can relate to your view of mankind and truth be told, I think some of the attention people pay is self-serving besides making them feel good for giving. Sorry, but that's the way I see a lot of charity aside from folks who just give anonymously. That said, I am sure there's goodness in them and the act...I am writing to you to tell you it's through my faith in God that I have moved past fear, anxiety, depression - not entirely, but I am on no drugs and function. Try praying- it can't hurt, I believe God lead you here. Yeah, I do. He has a sense of humor you know. I still trust few people with good reason, am under no illusions about my life, but I have peace and love that is unexplainable.

      Delete
  31. Thanks for writing this Ann - it was weirdly appropriate timing from my point of view because we had a really hard day yesterday. My Mom-in-law lives with us since her stage 4 colon cancer diagnosis last year, last week we found out that the chemo wasn't working anymore and she made the decision to enter Hospice. She has been in hospice for only 8 days and, even though she hasn't had chemo for 4 weeks, she seems to have deteriorated really quickly from the moment she signed the Hospice papers. I am not sure if its psychological. Anyway, yesterday she could barely move or speak for the fatigue and, for the first time, her eyes went yellow with jaundice (a result of the huge secondary tumor in her liver). It really made it seem real and like 'it' was about to happen. So i went straight to "Dr-Google" I was trying to find out about how 'the decline' happens - do yellow eyes mean her liver is about to fail? But everything is very vague, everyones time line is different. Anyway, then I went on facebook and saw your title about decline - just at that time. Weird timing.
    Today she has perked up a bit, so i am not so panicked but she is still not in a good place. I might suggest that she reads your blog... because, if she has the energy, I know she would relate to every. single. thing. that you just wrote! It might make her feel less isolated to hear about someone going through a similar thing. I wish she had the energy to tell you about her journey because i think you would relate too - so many similar experiences, it was a little as if she had written parts of your blog.
    On my part, i want to tell you that I just have so much respect for you and I am so sorry for all that you have to endure. You are very very brave. I have my fingers crossed (and my toes) that you will make it to that graduation. Huge amazing TDM1 wishes to you and lots of hugs to your family.
    Zoe

    ReplyDelete
    Replies
    1. I just want to express sympathy for your mother-in-law. I'm not brave, she is. It is difficult to give up treatment and go into hospice but she has accepted her reality. I hope she doesn't suffer. Give her a hug for me, even though she won't know who it's coming from.

      Delete
    2. I have been following your blog for years. And, you know when I think of you? Whenever I stop by my son's school, and have a chance to chat with one of the secretaries. I picture you with your radiant smile and wicked sense of humor.
      That image makes me happy. I wish it were today.

      Delete
  32. Yours is a beautiful account of staring death down and living out your life with grace. You have touched me in a way I didn't think possible. I truly wish you well, or as well as can be wished for given the challenges ahead.

    Good luck!

    ReplyDelete
  33. Your demystification of illness and death for others is honestly a great public service. I can't imagine how many terrified patients out there have been soothed by your words. The simple fact of knowing that one is not alone in this process, and hearing what is to come, must be infinitely comforting. (And for the ungracious poster, how we die is part of how we live, and no one is forcing you to read this!)

    Thank you, Ann, for your contributions to the world. They have already rippled out so far!

    -K in D.C.

    ReplyDelete
    Replies
    1. Thank you. As you know, I didn't start out to write about dying, as I was 100% sure I'd survive my Stage II cancer and mentioned it numerous times early on. Well, I wasn't so lucky and things changed. So I started writing about Stage IV treatment and how can that not include thoughts of death? It's not survivable cancer.

      Had I been diagnosed Stage IV from the start, I don't know if I would have started this blog. But we'll never know. I'm very glad to hear you think I am helping people - that's been my goal since I discovered more than my friends and family were reading it.

      Delete
  34. ann, beautiful post as always. Its rozem from her2support.org. I love reading your words, they are so honest and so descriptive I feel like I am walking along side you as you tell your story. I hope your pain is well controlled by your doctors (or you as it seems) and that TDM1 (sorry the new name is stupid) gives you way more time than the "average".
    I agree with the post above, the poster who has an issue with your writing on death should move on to some other blog full of daisies and roses

    ReplyDelete
    Replies
    1. Yeah, I don't know why they couldn't have left it TDM1, that's what we all know it by!

      Yeah, one wonders how he or she even found me, and then why took the time to write. Something must have hit a nerve, which I'm sorry for.

      Delete
  35. Dear Ann, I am the 38-year-old daughter of a Stage IV mother, recurring from Round One in 1999, and her own mother also passed away of breast cancer. I just wanted to tell you how much I love to read your writing. I am a copyeditor so I like to flatter myself a little that I know the good stuff when I see it. I think you are so brave. For whatever reason, even if you are writing about the details of this illness, I find your voice and your humour incredibly comforting. You make a difference to my day. I really, really hope you get some of that new drug. With kindest regards, L.A.

    ReplyDelete
    Replies
    1. I'm so sorry for your mother, and hers before her. You must be very nervous that you are next - I know I would be.

      I'm determined to get the new drug one way or another! Thank you.

      Delete
    2. Oh and it makes me nervous a copy editor is reading. I'm so bad with grammar! Please forgive me...... :)

      Delete
    3. Oh no worries, I'm a lazy one who loves being off duty!

      Thanks for your remarks. Yes I get worried, but I went for my physical today and the doc gave my boobs such a thorough exam that they were purple by the time she'd finished!

      Delete
    4. Ouch! Well, if there was a lump there she'd have found it. A purple is a hot color these days! :)

      Delete
    5. Ann, did you know that Amazon has an e-book publishing programme that anyone can use, and that it's super-easy? Lots of people are publishing their stuff this way. It's called CreateSpace, but I think you can access it from Amazon's home page. You just send Amazon a Word document and they turn it into an e-book in about 24 hours, available on the Kindle. They do everything for it, you set the book's price, and I think the author gets 70% of each sale and Amazon 30%.

      If your posts/columns were turned into a book, the proceeds could go towards your son's college fund. With his skills, he could research it and publish your work via this programe with his eyes shut, I'm sure.

      Just an idea...if you felt up to it, you could write some extra stuff to be included just in the e-book.

      You could also write about your earlier life, amazing things you've done, your experiences of...well, anything really!

      If you go to Amazon's home page, and scroll down to the bottom, there's a setion called "Make Money With Us". Under that is a self-publishing link.

      It's just a thought! I wanted you to know about it, in case you didn't already.

      Linda A.

      Delete
    6. Ann writes so beautifully. Turning this blog into a book would be such a gift to the world. Ann, I hope you consider it.

      Delete
  36. Ann I have a friend who works at Genentec in SF. Would it help if I made contact?

    ReplyDelete
  37. Barb, my philosophy is it never hurts to ask a question. What I'd like to know is how the plan is rolling out. Who is getting it first - hospitals? Smaller clinics may not be able to afford it right away at 10k an infusion. I'm the first person who has ever gotten perjeta at my clinic. I'd like to know about what it would take to get on compassionate use if my a) clinic doesn't have it b) hospital doesn't have it c) insurance denies it (although nobody thinks that will happen, but I'm on "case rate" so they won't pay full price either). You can email me at butdoctorihatepink at gmail.com. I see my doctor next week and I'm sure he'll prescribe it but getting it is a different issue. Would like to know how that is managed. Thanks so much!

    ReplyDelete
  38. No prayers here Ann, as you know, but heaps of gratitude for the courage, humor, and inspiration you have shown by sharing a most difficult journey with so many others. You've shed light upon a dark path and by doing so, made the journey maybe just a bit less torturous for others...

    ReplyDelete
  39. Ann, I found your blog about 10 months ago and I check every couple of days to see how you're doing. I'm hoping for some more "good days" ahead for you and your family.
    Best,
    Heather

    ReplyDelete
  40. I don't know what to say except that what you're sharing of your experience in all its honesty is such a gift. Thank you. I hope this new drug works wonders!

    ReplyDelete
  41. But what about the "nurse that was never meant to be"? I'm sure you have a great story, and I'm waiting for it. I'll wait till whenever you're ready to tell it....sounds juicy.

    ReplyDelete
  42. You stopped going to the forums but came back to encourage me. Thank You Ann. I will delete the question marks.
    LeahM

    ReplyDelete
  43. Ann, I'm just stopping by to say "hello" and send my love, along with some cyber (((hugs))) that will hopefully help to get some of the chill out of your bones.

    Beesie.

    ReplyDelete
  44. Ann,

    I've been out of commission for too many days (could even be weeks)--sat down a little while ago and began to catch up on my reading. I have no words just know I am sending you lots of love and tons of good thoughts. I hope to soon hear you have gotten TDM-1 and that you are among those who benefit from the drug. Please let me know if you run into any sort of snag with the meds. I will gladly create a massive twit storm if necessary.

    You are loved, admired, appreciated and so much more. Your willingness to put it out there, to be real, to let us in.... and to somehow maintain your sharp wit and your compassionate heart in the face of this amazes me.

    I can't do much from the other coast to help with the day to day stuff but if you need someone to make some noise..... I'm all over it.

    Massive love and gentle hugs, my friend.

    xoxoxo
    AnneMarie

    ReplyDelete
  45. Ann....God bless you for sharing your journey. I came across your blog when my best friend was diagnosed with BC. Your blunt honesty is inspiring and beautiful. Thank you for sharing this most personal and private part of your life. My very best to you!!! xoxoxo Mimi

    ReplyDelete
  46. Ann - thank you for writing so openly & honestly. I got to your blog from SoulPancake's "My Last Days" channel, and have been reading some of your posts over the past week. I haven't read a tonne of them ('cause I also have a 6-month-old so live happens in brief chunks!), so I don't know if you've already answered everything I'm about to ask you about - my apologies if this is an "old" issue.
    I'm wondering, do you have the opportunity to talk to any palliative care physicians about your pain & other symptoms? I'm not sure how things work in the US (I'm a palliative care physician in Canada), but I know here people shy away from talking to us until the "absolute last minute", when in reality there's often a fair bit we can help with much earlier on. We're really not the immediate harbingers of death people perceive us to be... anyway, palliative care physicians generally have a bit more specialized training in pain & symptom management than oncologists (because oncologists have to know SO MUCH about their field, it's hard for them to also stay on top of all the newest / more creative stuff in symptom care). We can work well as a team (except people are usually afraid of the term "palliative care". We joke that maybe we should call it "Fred" instead... except, I don't actually think there's anything good about not using the real words for things. Call a spade a spade. Call death death.). Palliative care just means helping with the symptoms and helping make all the parts leading up to death as "good" as possible. And helping there be a good death, too. It's about caring for people and families and friends and pets. And here's a weird analogy: when you get a cold, there's no "cure", you have to go through it. Any treatment you use to help you feel better along the way? That's palliative care. It doesn't do anything to change the course of the disease, but it helps you live with it so you can be more of yourself.
    Anyway - sorry, didn't mean to get up on my palliative care soapbox, guess it's close to my heart! - I just wondered if you'd had a chance to work with anyone specifically about pain & symptom care, not as an add-on to an oncology appointment; and if not, are you able to?
    In my experience, it can also be helpful to be in touch with palliative care "early" so it doesn't feel as frightening of a "transition" later. But really, it doesn't have to be any kind of "transition", palliative care does not mean giving up. You can still do as much active chemo, etc. as you want and still have palliative care.
    And one other thing: I'm not sure I took "Never Guess 101", but I've definitely experienced many very-well-educated guesses coming back to bite me in the bum! So, I never guess... just like I never want to give someone an "expiration date" (!!), we honestly have seen so many things go a completely different way than expected that most docs who work honestly around death never guess. But I do try to give honest ideas about what to expect, if people & their families want to know, because sometimes it can help to have some idea of what might be around the corner.
    I'm being "anonymous" 'cause I generally try to stay off the web wearing my professional hat (it kinda weirds me out that people could Google the "doctor" me, sorry!).
    I'm not sure if this will let me post websites, but here are some that might be helpful, for yourself or others wondering about palliative care (sorry they're mostly not US-based & it's a really random mix, and I'm adding spaces into the addresses so it will post them):
    book. pallcare. info/
    www. virtualhospice. ca
    www. hc-sc.gc.ca /hcs-sss/palliat/index-eng. php
    www. inspirationandchai. com/

    ReplyDelete
    Replies
    1. Thanks Doctor Mom!

      I actually have spoken to a palliative care pain specialist but only when I was in the hospital with c.diff. She made some recommendations to my regular meds (upped one so I could lower another) that my doctor followed but I have not spoken to her since.

      I know you haven't read much of my blog, but I do believe in saying it like it is and I am not afraid of the word "palliative" nor will I hesitate to call hospice when it's time.

      The only reason I can think of that I wouldn't go back to a the specialist right now is time. It is difficult enough for me to go to my one appointment a week (where I get my meds) so adding another doctor on seems to be a bit much right now. it's too bad they aren't in the same practice, that would make life easy.

      In any event, I am relatively comfortable and I don't think I can expect pain-free at this point, but I am not groaning in agony or anything. Just pretty achy. I think the vanco has taken care of some of my stomach problems; I'm pretty sure I was hit with c.diff for the third time.

      Around the corner is what I don't know, and why I keep the blog up. So the next person wondering what is around the corner will have a clue. Maybe I should look into adding another doctor if they can tell me that.

      I'll check into your links. Thank you very much.

      Enjoy that 6 month old. I think that was my favorite age as a mom. They learn so much so quick that you can practically see their brain growing. They become the smartest little lovebugs, but are not yet running away from you. Truly a gift, that time as a young mother. Enjoy it.

      Delete
  47. Hi Ann, thanks for responding! I love how thoughtful your replies are (on top of the fact that you DO reply!). Those links were just off the top of my head, definitely not the best ones so as I get my "work brain" back maybe I'll come back & recommend some different ones. I only have a sec right now but just wanted to say thanks, I appreciate it. - from Dr. Mom :)

    ReplyDelete
  48. I hope the new drug is available to you and helps you! I want you to make it for your son's graduation! You deserve that much. This damn disease has taken enough from you.
    Hugs and keeping you in my thoughts!

    ReplyDelete

Thank you for commenting. If the post is over 14 days old, the comment will be moderated and will approved later. This is a spam prevention technique - but I love to hear from you!