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.

Healthline Contest Official Winner

It's now official, I have the 1099 and everything to prove it.

They did a nice write-up of me, I put it in the side links but wanted to share it here with you all, since it really was YOU who helped me win.

http://www.healthline.com/health-news/breast-cancer-blog-wins-Healthline-contest-022013

In a day or two I will write up the thrilling tale of my latest illness.  It involves a long-suffering doctor, a stricken cancer patient and a nurse who wasn't meant to be.   Stay tuned.....

A belated THANK YOU for making me a winner!

As you all know by now, thanks to your efforts, I won Healthline's Best Blog contest.  That was no small feat as my competition was fierce and as energized as I was to win.  The competition was very long, but my friends pulled it out at the end, for which I am so thankful.  I was gratified to see my blog readers voting, my facebook friends, then their friends, then friends of friends.  The SoulPancake video of my family was shared and lots of people got on board.    I had a wonderful month where I gained new readers and new facebook friends and lots of people telling me they'd just found my blog through the contest and were going to remain readers.

Hey, y'all.

Oddly enough, on the afternoon of 15th, the day the contest ended, I became seriously ill.  I suddenly became very shaky, very weak, got a headache,  my heart was beating funny and I know my blood pressure was low.  I had to go to bed.  I followed the contest as best as I could through my iPhone in bed but that is very limited.

I am still quite sick - right now, on February 19th at 1:33, is just about my first foray out of bed.  I am like a little colt, walking around on wobbly little legs, trying to get her bearings.

Or, really, more like a Zombie, whose hips and knees don't coordinate with each other and who lurches along, hoping she'll get to brains.

I will soon be going back to bed as it is exhausting just being awake and up for the half hour that I have been. I have chemo tomorrow but will ask to see the doctor instead, and perhaps he'll know what is wrong, maybe this is normal cancer progression.  More likely, some tests will be ordered, or maybe - since I seem to be slightly improving - he'll just skip chemo and let me continue to improve and maybe I'll get better and this will be a cancer mystery.

Who knows?

I have had a stabbing pain in the spine and with the wobbling legs, I wonder if cancer has finally left the liver and entered the meninges?  I hope not.  Perhaps, the pain is just from sleeping in bed for four days straight? With bad shoulders, it is hard for me to turn over easily and with the enervation I've felt, I have not moved much.    It is hard to know.  I really should have gone to the ER but my one criteria for going to a place I consider hell - a fever - didn't happen.  

Without a fever, I stay put.   I didn't have the energy to get dressed, get in the car, and walk into the ER,  and my husband will probably have to take me to the doctor tomorrow, which is a rarity.  I do this thing alone.

I want to share that the first two days, I ate nothing.  Then one day I ate a yogurt, then yesterday I had a cup of coffee, a mini-brownie bite, two yogurts and a sandwich and a popsicle.  So I am improving in that area.

Anyway, all that is to say, I wish I could have been online to enjoy the celebration of my win with all those who actually helped me to win.  I wanted nothing more than to write a personal thanks to each and every one of you who helped me gain that money for my son's education as well as those of you who have been donating to my paypal fund and Derek's fund.  I wanted to "like" my brains out all over the place and WooHoo it up!  After a two month contest, we all deserved that.  I have planned (and still plan) to record my son saying Thank You since the money is for him.

But, this blog post will have to do for now and when I am healthier and up and around again, I will NOT forget.  Thank you.

Here is a video I recorded on the 14th, Valentine's Day, when I was thinking I might lose but not feeling like a loser. I posted it on facebook on the 15th, before the end of the contest and was going to post it here, but got sick too suddenly.   How quickly we can go downhill physically!  It's breathtaking.

Mentally, I still feel like a winner.

Easy Chemo

Before you read the informative and hilarious post below, I am asking you to take a moment of your time and vote for me - daily - in the Best Health Blog of the Year Contest. The prize is $1,000.00 and the contest ends the 15th.  I'm going to pull out the cancer card, pull on your heartstrings, and ask for your vote.  If I win, the money goes towards my son's college - he is a junior in high school.   I can't work to put money in my son's college fund anymore, and I have terminal cancer and may not even see him go.   You can see my family by clicking on the video on the upper right of the blog. --> If you watch, you'll see my younger son is very smart, articulate, scientific,  and will do well with college, and your vote will help him achieve. (My older son is smart too, but has finished school.)  

The contest is over on the 15th, and you can vote once a day via either twitter or facebook.  Healthline does not use your information and won't spam you so if you have procrastinated or are afraid of that, please don't be.  Now is the time!  I would be grateful for your vote and also grateful if you would ask your own social networks to vote for me.  If you click on vote, you can see on the top right if your vote registered.  If you get what appears to be a dark screen, just scroll down and see the facebook status box.  Ask your friends to vote and click!  (You can also close the X if you don't want anybody to know you voted, but why would you be ashamed?)   Although the other blogs are deserving as well, I would really like to win for my son.  I love all my readers either way; your support means the world to me.Click below to vote -  then the post: .

Healthline

EASY CHEMO

Many of us in CancerLand use the term "easy" to describe certain chemos.   "Oh, that's an easy chemo, you'll like that one" I've said to a cancer buddy, without realizing that statement may sound slightly insane to the healthy hipster sitting next to me at the Starbucks.   You normal folks probably don't even realize there are dozens of classes of chemotherapy drugs, all which work in different ways on your cells.

For those of you who haven't followed this blog from the beginning, let me explain and save you about 50,000 words:  if you are a Breast Cancer Stage IV lottery winner, your prize is treatment.

Forever.

Yay.

It never stops. There are no "six rounds of chemo and you are done" like with the earlier stages.   Early stage women get a few rounds of adjuvent chemo for the purpose of killing any microscopic cells that may be floating around.  In some of us, that didn't work, and so we end up with unsurvivable cancers.  We get palliative chemo, which means they are no longer trying to cure us, just give us symptom relief, maybe put us into temporary remission, or slow the cancer down and give us a longer life.  If none of that happens with one treatment, and the cancer progresses while on it, than we try something new, but we never stop.

Stage IV breast cancer, like cockroaches, cannot be killed, only controlled with poison, and not for long depending on where the cancer ends up.  Since mine's in the liver, my life expectancy was 3 years, and I've already lived 2.

Not that I'm counting.

If you are newly diagnosed with Stage IV, you may start with the easier hormonals.  It may be in pills or a shot, and they have their own side effects, but they are not chemotherapy. (A lot of people think chemotherapy is anything "chemical" you put in your body but that statement is archaic.)  Chemo drugs are a specific class of drugs that do specific, cytotoxic things.  Eventually, inevitably, that early treatment will fail, as that is the nature of Stage IV breast cancer.

Then it's on to Chemo for Life, which, by the way, would be a great name for a rock band.  You try one until it fails, and you try another until it fails and so on.  I am on my seventh chemo.  You hope that one will work for a time and you can stick with it.  Maybe it'll shrink your tumors enough so you can take a little break that won't be too dangerous and allow your cancer to pop back up like wildflowers in the spring.  But, make no mistake - you will never be off chemo for long.  In Stage IV world, you just keep checking off the chemo list until there are no more to try, and then you look into clinical trials and then you call hospice.

Then your lottery ticket blows into the wind.

Here is a list of the chemos I've been on:  Carboplatin, Taxotere, Taxol, Abraxane, Navelbine, Halavan, and Gemzar.

Ah, but that is not all.  I am on other anti-cancer drugs that are infused but which are not chemotherapy drugs: Herceptin, Zometa and now Perjeta.  Herceptin and Perjeta are for my specific type of cancer, and Zometa is to keep my bones strong.

Sounds like a bunch of comic book characters, doesn't it?

In a windy city, on a desolate planet, Carboplatin came to the rescue, scooping up Ms. Abraxane and the magical Gemzar and flying off to Navelbine in the hopes that the evil Halaven wouldn't find them in their lair.

So, now that the background is done:  what's an Easy Chemo?

1.  An Easy Chemo is one that doesn't have you praying to the porcelain gods, saying hi to Ralph or calling Earl.  It is also one that doesn't force you to take a zillion expensive drugs to prevent those colorful barfing metaphors.  As an example of expensive, the anti-nausea infusion that works best for me, Aloxi, costs $1400 a dose, which by the way, I get weekly.  Or used to, as it became too expensive for my insurance.  Now I get a less effective one called Kytril.   To make up for what Kytril doesn't do, and because my latest chemo seems to cause nausea, I just got a new prescription for an anti-nausea drug called Emend, which has a $50.00 copay - for three pills.

Three.

You can do the math better than I can, but 180 oxycontin only costs five bucks.  It seems it's a lot cheaper to control pain than to control puking.

Let's just say that I have cleaned my toilet in preparation.

2.  An Easy Chemo is one in which you get to keep your hair. Healthy people, listen up:  Not all chemos cause hair loss.  In fact, most do not.  If you see somebody who is in cancer treatment and they have their hair, don't assume anything based on that.  Don't imagine that they are feeling good and don't assume they are lying about being in treatment.  You may assume that their hair looks bad because it fell out and grew back in weird, because (ahem) that does happen.  I used to have long, wavy hair.  Now it's short and stick straight except for the back of the neck, where it is not only curly, but looks and feels like a brillo pad. We won't even talk about the color.  The truth is, once you have entered Stage IV World, many chemos you try won't take your hair, but trust me when I say we'll never have long hair again.  Whether it falls out or not,  chemotherapy of any kind is not good for growing hair and it's not likely to grow long and luxurious while we are on it.

And remember, we are always on it.

Here's a funny story, at least funny if you are a morbid cancer patient such as myself.  One of my nurses just told me about a woman she treated who had just died of breast cancer.  She thought I might have known the woman, but was not sure we'd gotten treatment at the same time, and I wasn't remembering her name.  So the nurse described her as "a woman with short spiky hair..."  Um.  That pretty much describes every breast cancer patient in existence. Anyway, I saw her obit in the paper, and I didn't know her,  but I am still sad she died.  She was my age.

An Easy Chemo is one that doesn't make your getting out of bed more difficult than getting your teenage son off facebook.  Cancer makes you tired. Chemo makes you tired. Together they make a tiredness bomb, only one too tired to go off, so it just sort of lays there, fizzling.   Some chemos make you more tired than others.

Cancer tiredness is not like healthy people tiredness.  There is no sleep I can get, no nap I can take, no rest I can do that will refresh me.  I am deeply exhausted, all the time.   I wake up in the morning (noon), make my espresso coffee, and immediately need to sleep for several more hours.   I would sleep all day if it wasn't for ritalin, which I asked for when I started Halaven, a very tiring chemo for me.

Ritalin only allows me to keep my eyes open, it doesn't give me energy to do things.  Sometimes, even nagging my husband is hard.  But if I didn't, he'd think I was already dead.

An Easy Chemo is one that doesn't leave your bones feeling like your dog has chewed them.  Once you are into your third year of straight chemo, as I am, your bones are pretty much always going to ache like a chef scooped the marrow out for his fancy gourmet dish, but it is a matter of degree.  Some chemos can leave your bones aching like you are Rihanna and Chris Brown played the drums on you, while others just leave you with a dull ache like you you have the flu.  The main question is:  One oxy or three?

An Easy Chemo is one that doesn't leave your skin looking like a 13 year old girl whose mom is in denial of her child's puberty and won't buy her any Stridex.  Yes, I am in my 50s and my nickname could be pizza face.

I read an unintentionally hilarious article on Oprah's website by a Hollywood Writer with Cancer about "tips for getting through chemo" that said, "chemo is better than Botox and takes all the toxins out of your skin.  Suddenly your face is as smooth as a baby's butt."

Hah!  No.  It is not better than botox (which, my dear Hollywood writer, puts toxins in your skin, as does chemo) and even without break-outs, my skin is not as smooth as a baby's butt; it's as wrinkled as time, and I bet I've done a thousand times more chemo you. (But probably not as much botox.)  According to her theory, I should look like a fetus's butt.

But wait.  A pre-born baby butt is pretty wrinkly so I guess I do.

Even worse, there are some chemos that cause "hand and foot syndrome" in which the skin on the soles of your feet and palms become red, peeling, and very painful (because the toxic chemo leaks from your capillaries into your skin, Ms. Hollywood Writer).  In the worst case, your hands and feet become almost unusable, which would be absolutely horrible if we weren't so tired we didn't really do anything anyway.

An Easy Chemo leaves your fingernails alone.  By that I don't mean you can actually grow them strong, or put polish or gel on them with any hopes of it lasting or anything, that is just dreaming too big.  My nails are weak, easily broken, and now ridged.  I only put polish on for very special occasions and hope it lasts a couple of hours before chipping off and taking half my nails with it.  But, a good chemo won't leave your fingernails turning black and falling off into your salad.  Fortunately, that usually only happens with early stagers, as they tend to be more gentle in dosing with us palliative care folks - but not always.

An Easy Chemo doesn't kill your blood.  All chemos will affect your white count, lowering it and leaving you as open to infection as Beyonce's legs on Super Bowl Sunday,  but some lower it less than others.  Some require the dreaded colony stimulator drug such as Leukine or Neulasta to keep you with an immune system.  Drugs, by the way, I will no longer take, even if that limits my chemo choices. Some chemos though, don't mess with your blood too much. For me, those were Abraxane and Halavan.

A few chemos will also affect your red count, leaving you dangerously anemic and necessitating a blood transfusion (Navelbine for me).  I know that's considered A Bad Thing, but I loved having a blood transfusion and dream of the day I can have one again.  It was seriously energizing, like crack for cancer patients.

An Easy Chemo doesn't cause neuropathy.  Some chemos cause nerve changes and some don't.  You can feel it almost immediately - your fingertips and toes suddenly feel more sensitive, or like they are burned or tingling.  Sometimes it goes away and sometimes it does not.  A good remedy is l-glutamine but you need to be able to put the dissolved powder into full glass of water and drink it four to six times a day, and I no longer can do that.  I sip water, but can't do large glasses or put a lot large amounts of anything in my stomach as it hurts too much.

An Easy Chemo doesn't make you constipated.   Just kidding.  All chemos make you constipated.

An Easy Chemo doesn't cause heartburn.  Some chemos can cause your esophagus to feel like it is made from a burning hot poker that was dipped into the fiery pits of hell.  Some can cause you to puke acid in the middle of the night while you are sound asleep, waking you in a terrible way as well as leaving your upper intestinal track burned.  No, I am not kidding.  Heartburn can be dealt with using medication, but many of those medications (specifically proton pump inhibitors like Tagamet) can't be taken by a person who had c-diff.  Like me.   So if Tums doesn't cure it, I'm SOL.

So, back to Starbucks.  You might think that when I say something was an "Easy Chemo" that I mean none of these side effects appear.   You couldn't be more wrong. An Easy Chemo might only give you 3 or 4 of them. It is up to you to decide which 3 or 4 make for your own personalized Easy Chemo.  For me, ones that don't mess with my blood,  give me heartburn or intense nausea, or cause me to lose my hair are the Easy Chemos.

I'm currently on Gemzar.  It is not an easy chemo.  I have hair but I am nauseated, have major gastro problems, it wreaks havoc with my blood,  and can barely stay awake even with double-doses of ritalin.

I wrote some chemo survival tips when I was newly diagnosed.   I stand by those tips, but it is really only for those who are doing adjuvent, curative chemo for early stage cancer, as I was then.  I'm too sick to follow any of those tips now.   For those of us on palliative chemo, it is an entirely different ball game, with different rules.  Well, really one rule:

Do it or die.

If you are Stage IV, here is hoping that whatever chemo you may be put on is an Easy Chemo.  More importantly, here's hoping that it puts you into remission, even for a little while.
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Meet Joel, Another Soul Pancake Production

Soul Pancake has a new video up, and this one is a heart-breaker.

While I was profiled for this show, as were others, the people you are about to watch below are the real heroes. As hard as it is for me to manage, and as much slips away from me day-to-day, I know it's thousand times harder for my family to watch than for me to experience. Every day I get weaker and sicker but I am an adult.  To helplessly watch catastrophic disease and illness happening to a child, your child, can be nothing short of torture.

And yet, this family finds grace in the horror.  The strength and love for Joel as shown by this family, the way they stand strong for him and their other children in the face of every parent's nightmare demonstrates immense power and love that all can learn from.

I wish them more miracles and endless love.

I know they'll get the love. In fact, I know they have the love.

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Abandonment is not a form of love

When I was a kid, during our long, hot Sacramento summers, my friends and I would mull over the big questions in life. We'd sit under shady trees, blades of grass tickling our tan legs, watching ants march through the bright green tangles and ponder life's great mysteries: What happens after you die? Why can't you remember anything from before you were born? Is it better to die quickly and painlessly in an accident, or slowly and painfully yet with time to say good-bye, like from cancer?

Maybe we were morbid kids, but I tend to think most children think about these things.

Prophetically, I was strongly in the cancer camp. I felt that it was important to be able to say good-bye, to finish up, to tell people that you loved them, to close the book, even if you had to experience pain. In my fantasy death, I would be sick in bed, pale, long black hair spread across the pillow like Sleeping Beauty, and all of those who had hurt me would realize it, come and hold my hand, apologize for the error of their ways, and I would be at peace.  I felt satisfied knowing that after my death,  those who didn't come to see me would be sorry forever for what they'd done to me.

Of course, life doesn't work that way, especially for some of us. I was raised in an addicted, dysfunctional family, hence my desire for deathbed apologies.  But as we who grew up in that kind of situation know, crisis does not make dysfunctional families normal.  It makes whatever was wrong, worse.

An almost a universal cancer experience is abandonment. Upon your diagnosis, somebody you know will disappear. This happens even if you have an early stage cancer with a good prognosis, but it also happens when you, like me, have a terminal cancer.

It is a hurtful experience to know that somebody you formerly thought of as a friend suddenly won't return your calls, or sees you in a room and walks the other way, and somehow manages to forget that you exist. During your illness, these people not only don't contact you, send cards or messages, or ask about you, but many of them go out of their way to avoid you.  This is not an adjustment period, it can go on for the entire length of your illness, no matter how it will end. It stings when it is is done by a casual friend, but it can be devastatingly hurtful when it is a close relative.

In my life, the deserter is my brother.

When you have a life-ending cancer, being abandoned is not only painful but puzzling. You wonder, "do these people not understand that they may never speak to me again?" "Do I mean so little to them that they will allow me to die rather than put themselves through whatever discomfort they may feel talking to me?"  "Do they really not care?" "Won't they mind when I'm gone?"

In three years, my brother hasn't called me, come to visit or as much as sent a card. Three years of chemo, three surgeries, half my liver removed, a terminal diagnosis.... and silence.   Last summer I was at my step-daughter's wedding, which was just a few miles from his house, and we were driving by on his birthday.. Miraculously, I was able to reach him by phone (normally a near impossibility) but he would not see me. I sat there staring at my phone, unbelieving, as I heard the excuses, "The kids aren't up." (at 1:00 pm). "My wife isn't feeling well."   "I have to run errands." and, because of course he was thinking about me, "Traffic will be bad for you, there is a race nearby."

There was no traffic.

The real reason, I think, was simple:  he didn't want to see me. He didn't want to feel whatever feeling I would bring up, whether it be anger, sadness or stress. He would not put himself into emotional pain for me, his dying sister.

Somehow, he must be able to justify this behavior, but I no longer wonder how or why, and I have come to terms with this disregard.  It isn't about me, it is about him and his failings.  He will have to live with them or, mostly likely, never think about it.

Let me make this clear:  If he read my blog, I would not post this.  Although my blog is meant to share the reality of dying of cancer as well as let others with cancer know that they are not alone, I believe that it is not the place to air grievances. But he will never see this; he has bragged he doesn't read it or any other blog.  And so, I share this very personal experience as I have shared others, because I know I'm not alone, and my mission is to let my readers know that they are not alone either.  I am not the only one who has experienced this abandonment by a family member - thousands of you have too.

I have heard that best friends, sisters, cousins, even mothers suddenly disappear when cancer rears its tumorous head. Many times - most times - people recover, and their friends and family, oddly enough, come back. A few apologize, saying they couldn't "handle it."  The formerly sick person is often unsure what to do or how to react when somebody suddenly reappears and acts as if all is well, as if nothing had happened, when they have had a major, life changing event.

I was prompted to write this because in searching around to see what things I need to take care of for my family, documents or decisions that I have forgotten to make, a search turned up this article on hospice.net. And, this line struck me:

"Because they don’t know what to say or do, or because your illness may arouse their own fears of mortality, they may even avoid you altogether. Know that their apparent abandonment does not mean they don’t love you."

Puhleeze.  I beg to differ.

I question the definition of "love" by the author of this article.  My definition (oh, and Merriam-Webster's too)  is "unselfish loyal and benevolent concern for the good of another." 

Abandonment in sickness means exactly that they don't love you.

Love is not a feeling. It is feeling combined with behavior. It is sacrifice. It is putting aside your fears and your desires for the sake of somebody else.

Growing up in the chaos of alcoholism, one of my favorite sayings became, "You are what you do." Alcoholics say a lot of things in the throes of drunkenness or anger, or depression or withdrawal, false magnanimity or intense selfishness. You can become very confused by the dichotomy between what is said and what happens.  All you can go by is what they do, not what they say they are going to do. "Actions Speak Louder than Words."

And, I have found that is true for everybody. People are not what they say they are, they are what they do. Behavior is like a compass, always pointing true.   So many people get into trouble by not understanding that.  Women get into abusive relationships, people marry the wrong person, they ignore what we all see as red flags.   If you are hit, abused, ignored, abandoned, lied to, and then told you are loved - you are not.

Here is love and caring: A husband who goes to the store day after day and night after night and cooks the meals and cleans after working ten hours because you can't. A child who never complains that they can't do something because mom doesn't feel well. (A mom who is sick and does everything in her power to make sure her child does everything that other kids do is love, too.)  A friend who comes 2 thousand miles to remake a bedroom. A old acquaintance who calls out of the blue just thinking of you, to see if you want to go to a Globetrotters game. A gift card for food delivery, a homemade meal brought over, an offering of something soft or a dessert or a note or text sent for no reason other than people know you are having a hard time.  That you have cancer.  That you are going to die. That they'll miss you.

That is a big thing, and good people care with action.

Those things are love. Love is sacrifice of time, energy, money, and thought on behalf of another person. So, those of us with cancer, many of us who have had somebody abandon us in our lives, we must learn to focus on the good - the ones who demonstrably love us - rather than the ones who don't.

Had I written the line in that article, I would have written,

"Because they don’t know what to say or do, or because your illness may arouse their own fears of mortality, they may even avoid you altogether. Instead of focusing on those who have left you, make sure you focus on those who are still around and who are generously giving of their time. Because, you will find that there are more of them than you know."

I would never tell somebody to understand or forgive abandonment.  It is a cruel thing to face when you are dying and we have enough to contend with.  At some point, it is OKAY that it is about us.

Speaking of forgiveness, aside from that one line, I found some very helpful articles on that site, so if you have been diagnosed with a terminal illness, or have a family member who has, then check it out.  I particularly liked the concept of an "ethical will" and will be implementing that idea in my own life.

The one thing I know, like my old childhood fantasy, is I don't want anybody crying over my casket who was not crying with me in life.  As an adult, I know I can't make anybody sorry, but I'll be taking steps to make sure that my children can mourn in peace.

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