Tuesday, August 14, 2018

Monday, July 16, 2018

New App for Cancer Patients

Over the next month, I've partnered with Breast Cancer Healthline to test and use a new app for breast cancer patients, and I'm excited to share it with you.

Why an App?
The internet has changed so much over the years - when I was first diagnosed, the only thing available were articles,  forums and blogs. What I really needed was human interaction, so I found breastcancer.org's forums and posted there to get the help and advice we all need so much, but I found certain aspects of it problematic, mainly, the vast number of sections.  I also read blogs, and when I couldn't find what I was looking for, started my own (this very one!) so the next person coming along would find what I'd wanted.

Then Facebook rose up.  There are plenty of breast cancer groups on facebook, many of which have done a lot of good.   I truly believe that my blog and facebook helped spread the word about metastatic cancer, and while groups and companies have a long way to go, those of us with mets are not always forgotten as we used to be.   There is a negative though - when you log onto facebook just to catch up with family for friends, you find that many of the groups have had people who have died. It becomes overwhelming, and certainly is not what a newly diagnosed woman needs to hear. 

Now, an App
The latest and greatest technology is an app. They are designed to keep you entertained, organized, help with shopping and productivity.  And now there is one designed for breast cancer patients, so we can talk to each other.  It's so simple - it's in your purse, in your pocket; it's easy to use and there are people waiting to talk to you at the push of a button.  And you get to control when.

The overall point of Heathline's Breast Cancer app is to match you with others who have breast cancer one-to-one. Not only just match you with similar women. They match you to another person who has put down some of the same concerns that you have.  There, you talk to them individually, via an ice-breaker question where you can start a private conversation -  or through group topics.  One of the things I enjoyed was the groups were not be broken down into every type and combination of breast cancer there is, as it becomes confusing and impossible to fit in.  So far, there are just five main topics, which seem to cover everything we need when it comes to breast cancer. And, yes, Stage IV is one of the topics.

Now, let me assure you this app is free and ad-free.  I am asked to advertise things on this blog every day and I say no to 99.9% of those things. Every app so far that I've been asked to look at has been the same - medication monitoring and doctor appoint remembering.  None have been about what we women need and want - communication.   I have worked with Healthline in the past and know the to be a trustworthy company.  This app is something I believe in, and I think it is handy to have, and if you are having one of "those" moments, you know, those "I need to talk to somebody who gets it or scream" moments -  well, this app can be there for you.  It is also very handy for those newly diagnosed, which is by far the most confusing time of a persons life.

So did I interest you?  How do you get it?

For Android or iPhone, you can download it here:

Here is an article about it, and I was interviewed! 

Sunday, July 8, 2018

Gifts, they keep on coming....

Me and my son at Caltech's Graduation Party

I've fallen back into the world of the consumer, living life as others do, unworried about the future,  as it should be for a person who has lived 3 years in remission.  The cloud is gone, the sword has disappeared, and I no longer worry about my illness and death.  Fantasyland?  So far this disease is not considered survivable - but that was before there were many of the drugs we have now.  We don't have new statistics as we haven't reached the end cycle of the studies.  I may have a relapse and die, as several long-term friends sadly have, or I may be on the leading edge of a new wave of Stage 4 Survivors.  For now, my doctor says stay in treatment, we'll talk about it in a decade, and he doesn't know more than that.  I can live with that, I have learned how.  Uncertainty is my jam.

Whatever happens with my cancer, it is not happening today, this month, the next three months or (with fingers crossed), even this year.  So sure, I am left with certain problems from years of continuing treatment but on the whole, living well.  I am back to buying clothes off-season for the savings, buying regular beauty boxes without worrying I'll be gone before it arrives, splurging again on a handbag or shoes since I believe I'll be here to enjoy it and I deserve it (as does everybody), and generally going crazy with the perfume!  (I smell wonderful, always, even if I wear PJs all day.)

But as much as I am back to enjoying frivolity, I have been given gifts much more satisfying.  For life continues to march forward, with milestone after milestone, ones I thought I would not be here to see. Now, each one delights me, and I enjoy it like a child on Christmas morning.   A couple of weeks ago I was privileged to watch my youngest son graduate -  from college.  Something that back in the early days of this disease, and which long time readers of this blog know, I never thought possible.  Well, that isn't even the truth, I never thought about it at all. 

I cried like a baby when he made it to his high school graduation and vowed to make no more future goals aside from making his college dorm bed.  And I haven't, but life in its beauty and sadness keeps coming.  This time - this graduation - there were no tears, just beams of pride.  (And a rather large dent in the bank account, chewed up feet from mismarked shoes and an argument with a stranger that maybe I'll tell you about one day.)

He has always been a high achiever, my baby, and he continued that at Caltech, one of the top technical/science schools in the world, graduating with a high GPA and a double major - in mathematics and computer science. Yes, I most certainly am bragging, but he's done, I can't brag about college again.  (I'm sure I'll find something else.)  He has never been home since he left at age 18,  except for Christmases and holidays.  He spent every summer interning and learning software engineering, and now he will start working at Facebook this fall, making, at age 21, a starting salary that made me gasp.  He seems happy to be done with college, and eager to start his new life but mostly, he seems to be enjoying each day.  And isn't that what you want for your kids?  To do better than you, certainly.  But to also be happy.  So wherever his path takes him, I'll be there rooting him on, even if it changes and becomes entirely different.  It does for most of us, doesn't it?  I am lucky that he is home for this summer - the last time he will ever live with me.  Then, the plan is to scrape up the last of my father's inheritance (which is how we paid for his school) and we'll go to Hawaii for a family vacation, of which we haven't had many since I got sick when he was 12.  Then he'll move to the Bay Area.  This time, I'll let his girlfriend make his bed,  and again and forever, it'll just be holidays and rare weekend visits.  Sad, as I would love for him to live nearby like his brother does, but this is as it should be.

The rest of my family is also doing well.  My stepdaughters are busy and happy and doing well in their respective careers, my grandchildren are incredibly beautiful and growing so fast!   My oldest son is also settled into a good career and has an active life with lots of friends and doing interesting and scary things. (Have you ever heard of Tuff Mudder?) 

So I did get everything I wanted that day I was told my cancer was life-ending - the knowledge that my family is well-ensconced in their own lives.  And now?  It's just my husband and me in our boring, married routines - watching TV, reading, me shopping, him shaking his head at me shopping. He is a decade older than me, and for the first time, I worry that he may go before me.  Fortunately, he's very healthy.

My best friend says that I'm now living life like an old person - enjoying other people's accomplishments and milestones instead of my own.  At 60, I'm too young for that, she contends.  She's busy packing and her house is on the market for a retirement to Belize and exciting adventures ahead.  Me?  Well, I can't argue with her, she's right. These days, an accomplishment of my own would be spending a few hours shopping or seeing a movie with a friend.   My husband would clap if I did laundry and took it out of the dryer on the same day.  So yes, I do live through my family.

Remember, although I'm in remission,  I still do chemo regularly.  I still don't feel healthy often. I keep thinking I should find a job at a little boutique or something; the money isn't important (although I'd feel less guilty adding another perfume to my shelf if I earned some).  Just the routine would be helpful.  Or, I should volunteer at my old school.  But then, I do chemo, and I'm sick for ten days, or I go out to lunch with a friend and am so tired after 2 hours I need to sleep for three.  I remember again how unreliable I am.  Not to mention my white count is usually about 1.3 before my chemo, which those who get chemo understand - I barely have an immune system. They always call the doctor to ask if it's safe to give me treatment and he always says yes. 

The point is, it isn't fair to others to inflict myself on them and it isn't always safe for me to be around others. 

I don't know what goals, if any, I would have for myself, if I hadn't gotten sick. Would my husband and I be travelling?  Have moved?   The thing is - I suspect, knowing me - nothing would have changed.  I've always been happy being an introverted homebody. I've never needed loads of friends or lots of activities.  I'd still have a job, so less of the inheritance would have gone to Caltech and we'd likely have spent some on long overdue home repairs.  But that's kinda it.

Years and years ago, when I first started down this road, back before my first chemo, December 2nd, 2009 (can you believe that?)  my doctor once told me that it was active people who suffered more with chemo - people who were athletic and physical.  People like me, who enjoy reading, watching TV, doing family things - we don't feel the slowing down as much. I suspect that is true.  There is no chance I would have uprooted my life at age 60 to go to the blue waters of the Caribbean sea,  and while I admire my friend's intrepid spirit, we all live our lives in the way that is best for us.  Needless to say, I'm glad it was me who got the disease, and not her. 

There are worse things, I think, than living life through the eyes and accomplishments of those you love.  Not having those people would be far worse. 

I hope to continue to live through other people's accomplishments for many years, as long as it is these people.

My husband, son, and me after the graduation ceremony.  

I'm sorry I haven't written this blog in a few months.  I have a few things to tell you so don't disappear!  And as always, you can find me on facebook although I've been less active there lately too for no reason other than my son is home and I'm enjoying that.  

Tuesday, February 20, 2018

Where has the time gone?

My husband said, "Did you realize you hadn't updated your blog since July?" 

"Wait, what?  It can't have been that long!" 

Indeed it has been.  And so I apologize, because I know that when I don't blog for a long time people assume that I am dead.

Not yet.  In fact, my routine hasn't changed since I last blogged, although a few non-cancer related things have. 

I am still on Kadcyla, as I have been since November 2015.  I have spots in my lungs that are barely active.  The only thing that shows in my liver is that the biliary tract is mildly distended, and although that has shown on sonogram and PET, nothing seems to be growing.  My last PET was almost six months ago so I suppose I'll be due for another in April.

The Kadcyla hasn't been easy on me as noted before.  I get a lot of headaches. I get a lot of nausea and heartburn, and a lot of fatigue and aching bones. When the neuropathy in my fingers and toes got so that I couldn't knit, he backed me off to every six weeks, so that's where I am now. (I was only learning to knit so no loss.)  I still struggle for a couple weeks after the infusion but then I start to feel better after about ten days, but not healthy.  Food is still an issue for me - eating is painful.  But I have gained all the weight my oncologist wanted and even a couple pounds more.  It's the fruit Popsicle diet - bad for your teeth but it's about all I can tolerate without discomfort.  The wildest thing is my liver function tests have been going up and up and up for the past six months.  He did a sonogram which didn't show anything but the biliary dilation so the numbers are likely a function of the Kadcyla.  Not sure what he's going to do about it.  He said if it was fatty liver, well, he'd do nothing, but that didn't show up on the sonogram either.  So who knows? Another thing I don't worry about.

The scariest thing is I have heard through the patient grapevine that my oncologist will retire at the end of this year.  He has kept me alive for a long time and it makes me very nervous to start with somebody new. But that is nearly a year away so no point in worrying over it now.

The best news is I have a new grandchild!  He was born December 1st, and is now at that adorable age where he's squirming and smiling.  He is the happiest baby I've ever seen since my oldest 30 years ago.  We recently took him and his brother to a playground on a very chilly, windy day and he was all smiles.  In fact, I have never heard him cry for more than a second and then he is easily soothed.  He allows me to carry him, which his brother never really did, and so I have learned just how heavy 14 pounds is when you are an out-of-shape, almost-60 cancer patient.  The two boys are so adorable, I turn into a rag doll around them- a complete love mush whom the oldest happily bosses around.  I love it.  Maybe I can't hold the baby for long, but I can play knights and fireballs just fine. 

Yes, I said almost 60.   April 5th, I'll be 60!  Wow, officially a senior citizen, no denying it now.  All this cancer business started at age 52.  I had a child in middle-school so was able to pretend to be a young mother, but now I'm a for-real old lady approaching a milestone birthday, with no end in sight.  I really hadn't felt worried about aging, or my husband aging, for obvious reasons.  (Somebody else's problem, you know?) My husband is a decade older than I am (will be 71 this summer)  and now, for all we know, I could go on for another decade myself.  All the concerns I had about that situation are back in place, but again, my mantra is that I don't worry about the future.  He works out religiously three times a week so is in good physical shape. Alzheimer's runs in his family but no signs yet.

My oldest son and his wife are planning to start their family, which is very exciting.  Having a grandchild who lives in the same town I do would be life-affirming gift. That is a future I can't stop myself from imagining; a new grandchild where I could pop over and help while mom or dad naps, babysit, and go to parks and just be there - without a difficult three hour drive between us like I have with the other two.  All of them together at holidays playing - it will be joyful. It is imagining those scenarios that keeps me going.

My youngest son - the one whose high school graduation was the thing I wanted to live to see?  He graduates college in June.   He will have a double-major in Mathematics and Computer Science from The California Institute of Technology, aka Caltech.  (I cannot brag about that enough.) He has already accepted a job offer in Silicon Valley, and just like that, he will make more than my husband and I ever did in decades of working.  We are proud of him, and will also be very happy to have no more college bills. (Thanks Dad, the money you left me covered all of his college.) 

My husband and I, like any elderly couple, have our routines.  It's funny, we moved into this house 25 years ago with four kids.  Next door was an elderly couple - nice people, but we were always amused because the old man watered his grass with a hose, wearing holey, ancient green sweat pants that showed his butt crack.  Now, a young couple live in that house with two children - and we are the elderly couple. (I'm not sure what they may laugh at since we have a sprinkler system,  but I make sure my husband's butt crack stays hidden.  Mine too.)

Because we don't know how I'll feel from day to day, we don't do any travelling or anything like that. We don't need to spend thousands for me to sleep and have a headache in a hotel room bed.  When my son graduates, we are thinking of something simple, like Hawaii, as a rest for him and a rare family vacation.  He may be too much of an over-achiever to enjoy it though, not sure he's the sit-on-the-beach type. (He wants to go to Japan, but for me....just no.)  We'll see if there is anything left of the inheritance money for this trip.  I'm also thinking a Vuitton purse might be a fine birthday gift!  (I don't think age will ever take away my love for fashion, but even I balk at $2,000 for a handbag. Maybe I can justify it with a milestone birthday?)

I shop on Amazon more than I should, because it is nice to have a package coming to the door, even if it's Breathe Right nasal strips. (Oh my god, those things are AMAZING!)  When the college bills are finished (one more payment), maybe we'll do some things around our crumbling house with the peeling pain and broken garage doors and....oh, shit,I just realized what the neighbors are laughing at. 

Our two greyhounds, however, prevent a lot of that at the moment.  They are getting old, as dogs do. One is afraid of her shadow, loud noises scare them both, yet the youngest is still a big puppy-like pest when people come over, following them from room to room.  Worse, she jumps when they enter.  Which might not be so annoying if she was little, but she's the size of a pony.  (While I have not been able to teach her not to jump, I have taught her to control her excitement by going outside and running a lap in the back - so when people come over she runs to the back door for her excitement lap, skittering across the hardwood to get there, which is hilarious.)   I want to hire a housekeeper but the dog has been a problem before.  Surprisingly, not everybody wants a waist-high dog following them from room to room and sniffing their crotch while they clean.  Boarding them is incredibly expensive.  Every time we go visit the grandkids and stay somewhere overnight, we double the cost of a room to board our dogs. It's a hundred a night for them!  What a racket. 

My little kitty died.  We tried to keep her alive too long I fear.  She gave us a great 18 years and it was hard to let her go but we were doing her no good with the treatment.  I'd like another cat to be honest, but not until the dogs are gone.  I still hear Pixel - there are sounds that mimic her jumping off the table and coming to see me,  and she's been gone for six months already.  I miss her.

And, that's it.  A boring life, but it is a life.  You can see why I haven't blogged though.  It's not so easy to just say "I'm alive" every few days.  I'm at the phase of life where I am waiting for others to do things that excite me while my treatment is stable. No cancer blogging material.

I do quiet things - artistic, crafty things, and read and play on the Internet (although I've even been taking a break from that for a bit).  I have become a perfume addict, with maybe 100 samples I'm methodically trying, from vintage to brand new, and am learning all about it and the difference between Chypre and Gourmond, White Flowers to Aquatic, and I am smelling the individual notes in each perfume.  I go in themes; I just bought samples that movie stars of the 50s liked, as well as wedding day scents of famous royals.  Maybe I'll pop into the blog to write about perfume or one of my other interests since my health is continuing to be stable.   My current wearable favorites are Miss Dior, Mon Guerlain, M. Micallef's Ylang in Gold,  and my old favorite, Joy. 

I will let you know if I have a PET upcoming and what it says.  When I first was diagnosed with mets the idea of living 8 years seemed almost impossible - a pipe dream.  Now, it seems realistic to live another 8 and another 8 after that.  Never give up, my ladies with mets.  If you read back early in this blog, you'll know I didn't have an easy time of it, and it didn't look good for a while, and progression happened with many chemos.  And yet......here I am. 

My best advice to you who is newly diagnosed and finds this is to not assume your time is limited.  Doctors shouldn't give out statistics because they are not for people, they are for populations.  Don't nag yours for one if he doesn't volunteer because he doesn't know.  Every person is different.  If yours does give you a number early on, don't put your faith in it.  Living years happened to me, no reason it can't happen to you too. Don't stamp an end-date on yourself, because you are going to feel pretty foolish when that date passes. 

On the other hand.....you'll never be more happy to have been a fool.


Almost 60!


Thank you to all who have used my Amazon affiliate link when doing their shopping.  If you click there before a shopping trip, it gets me a few dollars every month, and since all of my unnecessary but still fun shopping is done online now, it really helps.

Thursday, July 6, 2017

Living Eight Years On Chemotherapy

"Hold your breath."

My nurses always say that before they stick the needle in, a habit they can't drop.  When it's a needle in your arm, they say "little stick." When it's in your chest port, it's "hold your breath."  I guess it makes the port stick out, or helps with the jab or something - I don't know.  My port is in my arm and holding my breath does nothing, but they always say it anyway, then apologize.  Habit.

The drip starts and I sigh.

I have a sick cat.  Ironically, I have to give her Sub Q fluids twice a day - a drip bag exactly like mine with the added bonus of three IV meds delivered in the bag port. Reminding her to told her breath won't help - she has taken to hiding in a closet because she doesn't like the needle stick.  People though, we obediently hold our breath.  We don't hide, we walk through the doors to face the discomfort, and even sometime bring our nurses gifts.

Cats are clearly smarter.

A few weeks ago I'd had another scan, and I'd gotten the results from my doctor.  I'm still NED. We were happy, both my doctor and I. But then ... I realized that I may be on this chemo for more years, and if not this one, another. My doctor has said that I am having a neurotoxic reaction to this chemo, causing bone aches, severe fatigue, stomach pain and headaches.  But it's working and he has pulled back as much as he can, stretching times between chemos. We went from every three weeks to every month, and he doesn't feel comfortable doing less.

When  he told me I was still NED, after our smiles faded, I nearly burst into tears. It hit me really hard that this was going to be my life.  Chemo drips and appointments are one thing, but living on a drug that causes pain, anemia, fatigue, neuropathy and toxicity - for 3 weeks a month, for the rest of my life - is quite another.  For literally three weeks after my infusion, I'm quite sick and can barely get out of bed.  I sleep over 18 hours a day.  Everything hurts and the strongest drugs don't really help.  I can't get dressed, or eat.  That last week is when I feel more normal and want to do things. My brain starts up again and I plan - I want to shop, clean, plan a vacation.  But then.....I have to get out of the closet and I have to open the chemo door, and I have to start all over.  I always hope it'll be different this month  - and it never is.  It's not much of a life.

I asked him, "What happens to your other patients who have been on this chemo for years; how long can I expect this?"  He looked at me sympathetically, knowing what I meant, and said something hair-raising, "Nobody in my practice has lasted as long as you on this drug without a relapse, you are the canary in the coal mine."


Two years on this drug.  I've now made it six full years with metastatic cancer to the liver and abdomen and lungs. My original cancer was discovered 8 years ago, and I barely finished treatment before I started again with mets, so in reality I've been on chemo for pretty much 8 years straight, with a time out for just perjeta/herceptin/zometa only.

I wonder if I can even blame the Kadcyla for the way I feel now, although I don't know since I've just started down the coal mine path.   I think my body is just finished entirely. It is telling me that 8 years of chemo is enough for me.

Eight years on chemo.  Is that enough?

People (rightfully) complain when they have four or six rounds - four months worth.  I've had hundreds of rounds.  I know I'm not the only one but google it - you won't find many.  I am in an elite group.

I don't believe it is possible to describe what that is like, either physically or emotionally.  My doctor saw it on my face and he sympathized when I pathetically whined, "Will I ever be done?  What if I'm NED still in a few years?"  He said, "You are almost worse off than somebody not NED.  You're in the same treatment but are always waiting for the other shoe to drop, never knowing when that could happen but knowing it will. We can talk about stopping though, if you are stable in ten years."

Ten years.  I do not think this is possible to do for ten more years.  Is that supposed to be hope?

I understood, having been there - at least when your cancer is growing you are "fighting" for something. You are being brave.  When it's not working, you switch to one maybe less uncomfortable or more uncomfortable, but there is a reason.  The pain has meaning; you are desperately fighting for life, for time.  Now?  It's a way of life.  One my doctor clearly believes I'll never be finished with.  I have achieved the goal of life at least temporarily, but I'm ungrateful - it is not the life I expected. I have won - I'm the person everybody with metastatic breast cancer wants to be - a person who has had years. I have also lost.  It is a life in which I am still breathing, but in which I cannot do most things, enjoy much, and one in which I depend on others for everything.

Is it possible that I am stuck in survival?

These six years have been the longest of my life but here I am with more stretching in front of me. My days are empty, just sleeping, discomfort and so tired.

And yet....there are those moments of joy - I've experienced weddings and babies and happy times. More will come: my stepdaughter is pregnant and we will have a new baby in November. Another stepdaughter is getting married, and my oldest son is planning his family. Next year my youngest will graduate from college, and all those things are miracles that nobody thought I'd be here to see.

But who expects their life to be only those things?  Can one live for only the miracles? Is that good enough?   I'm no longer sure.  I miss doing laundry and shopping and cleaning the kitchen, going to a restaurant, just the simple things that I don't feel healthy enough to do.   My life has been pared down to only a few days a year.

My little cat is 18.  Her kidneys are in failure.  They say that cats are so well taken care of now that they outlive their kidneys.  Like a cat, it is possible that we have learned enough about treating cancer that we are creating people who are outliving the lifespan they were supposed to have?  We can keep people going, but don't know enough yet about how to keep the side effects of treatment at bay.

My cat - it is time for her to go but we are doing all we can to keep her going to see my son once again; her moment of joy.  Who better than I to know that some suffering is worth a future happiness? We found her as a 3 week old kitten in the middle of a street when my son was 2.  She was dehydrated, her tongue was cracked and I nursed her to health with a liver paste she licked off my finger despite the pain. We have had 18 years of her purrs.  After her treatment, she is clearly doing much better than when she was diagnosed - she's eating, bright-eyed, using the catbox and not collapsed like when we brought her in to the vet.

But she sleeps in a closet all day.

Is she happy?  Is she living a cat life?

Am I living a people life?

It will not be long until I take my kitty in for that final shot, I know.

There is no final shot for me, at least until I make the choice to go off treatment and let the cancer come back, as all believe it inevitably will.  Who though, gives up in the midst of success?

It is not easy being a canary.  All eyes seem to be watching me, waiting to see how much I can take before I keel over.  But because I have been given what so many others were denied, I don't think I have a choice but to hold my breath and go on.  

Thank you to all who have used my Amazon affiliate link when doing their shopping.  If you click there before a shopping trip, it gets me a few dollars every month, and since all of my unnecessary but still fun shopping is done online now, it really helps.  Well, it's not all unnecessary - I buy gifts and items for my cat and books for me.  Having a package coming in the mail definitely brightens my day.   Remember to use my link come Prime Day!   Thank you! 

Sunday, April 9, 2017

Book Review: Cancer was not a Gift. My friend Marty. A question.

Cancer Was Not a Gift & It Didn't Make Me a Better Person: A memoir about cancer as I know it by [Stordahl, Nancy]

I confess to having wondered why people hang on to cancer when they have been through treatment and have the ability to put it behind them.  This isn't meant to be a mean or insensitive thought; it's more along the lines of wishful thinking.  I so wish I could have been given the ability to put it in the past; to be the person whose last chemo was 6 years ago rather than last week and to not even think about it.  I like to think that if my own bout of cancer had ended when it should have -when I was done with my mastectomy, chemo, herceptin - (by now I'd even be done with my tamoxifen) - well, I'd hope that I would not be thinking of it except as a distant memory.

Of course, I know better. That never happens.  It is always with you.

I understand that a brush with cancer can cause a form of PTSD and can be present years after medical therapy is over.  Some think about it daily and some only once in a while, but the truth is, once cancer touches your life, it is there forever. Your friends and family forget - but you don't.  The fear lasts, the experience lasts, and in some cases, side effects even last.  For some, cancer is a silent ghost, forever in the corners of their lives, appearing unexpectedly at the turn of a head, a minor ache or pain, years after they have physically recovered.

Nancy Stordhal is one of these people, not only because of her own experience, but because her mother died two years before the  disease became hers. Nancy knows better than most that cancer is not just a curable cell mutation - it becomes part of you.

Her cancer story, and her mother's, is told in her memoir, "Cancer Was Not a Gift & It Didn't Make Me a Better Person."    Her clever title already belies the storyline that we are all familiar with  - that cancer changes us for the better, makes us better, more thoughtful people, and has something to give us.

When it takes your mother, and tries to take you, that is impossible to believe.

Her book explains exactly why there are no pink bows attached to this diagnosis, and why the myth about cancer being the ultimate teacher of positivity is a mere marketing tool, and why it's so alienating to most of us.

While not giving away details, the story switches between Nancy's unexpected diagnosis two years after her mother's death and her mother's struggle.   She looks back on and describes her mother's experiences as she faces her own diagnosis, treatment, and recovery.  It is a family tragedy, words unsaid, situations only realized after the fact.  The fear and sadness cancer causes is the star of this book, not empty words and false smiles people believe they must put on.

There are no ultimate whisperings to love your life, appreciate your minutes -  just sadness and regret and anger.    But isn't that what this disease is about when a loved one dies?  Cancer causes suffering.  It causes heartbreak, and pain.  This book illustrates these emotions with unflinching honesty.  Not that it is all depressing. but the point is that one does not have to pretend to be happy in the face of misery.  Nancy expresses what most of us feel and which society dismisses.  The only story people hear is the happy one.

If you are the type of person who wants to read about the reality of cancer, this book is for you.  No, it's not graphic, but you will read about a daughter taking care of a mother during her last days - then facing the possibility of having those same last days.  It is absolutely heart-wrenching.

Nancy's experience will show you exactly why this isn't a disease that is easily dismissed, and why one may be dwelling on it years after treatment.

The book is well-written, clear and uncompromising.  Her practical style shows through, as does her thoughtfulness.  While the subject matter is depressing, she is not depressed. She has support, but she is honest that this is not a pleasant experience.  Whether you have cancer, your relative does, or you just want to read about this disease, this book is of interest.  You will learn that we are human, we do not have to love our cancer experiences despite what society says, and that is a message that is worth internalizing.

Nancy also has a facebook page, and a blog.  She has written a book about dealing with chemo and a mastectomy too, both practical books, that I recommend for the newly diagnosed.

I contacted Nancy and she has generously offered to give away her book, so anybody who comments below is entered to win to win!   Please make sure to check back so that I can make sure the book can get to you.

My Friend Marty

For nearly 20 years, I have been a member of a group of people who  post online.  We all started out discussing an electronic piece of equipment and now are just friends, who have met, gone on trips, and a few have married! We have gone through divorces, a few deaths - and cancer.   One of them is a friend named Marty, a man who has never, to my knowledge, said a bad word about a soul.   He has pancreatic with a short life expectancy.  He has a travel dream,  and while I normally do not post these funding things because many of them turn out to be fake, this is a person I know, care about and I want him to go.  He has never been a wealthy person and can use the help.  If anybody can donate even $5.00 to him, I personally would be very grateful.  I know Marty would as well.

When he showed me his GoFundMe, I said in astonishment, "You have the energy to travel that far?" and he responded, "It doesn't matter, I want to go, it's been my dream and I AM going."

Please make that happen for Marty.



Me own .....ideas? and Thanks.

Finally I thank all of you who uses my Amazon search box to the right to make your purchases.   This affiliate like really helps me.  I usually get 20 or so on Amazon so I can purchase something I want or safe it until Christmas.    Please keep using it - just go to the right of my page and search there for your purchase. Anything you buy in that session will give a small amount to me.


Please don't think negatively of me, but I am thinking of starting a Patreon to make a little money here and there - what do you think of that?  By now, this blog is the size of five books and I think a little money would encourage me to keep it up.  Or obligate me!   :)  I want to keep the content free, of course!  To use Patreon, I have to come up with awards, and suggestions for those would be great! (Typically, people do behind the scenes things, like chats or something, but most are YouTubers.  I can be flexible!) Not that I'm broke, but I have not worked for a long time, I still have a child in college (one year left!) everything is going up in CA (water bill - from 15.00 to 80.00!, and of course, insurance which went from 0 to 5k.  I have tried to make things to sell ....you all know now that goes. The pens were not cost effective, not to mention that I get sick too often and can't be consistent.    So please let me know if a Patreon is too cheesy or undignified and you would think negatively of me for doing it. (It would be voluntary, of course).  I have also considered writing an book like Nancy has done, but again, it is difficult for me to do things day to day and Nancy has the market cornered!  I had a publisher who was going to turn my blog into a book but she flaked and frankly, I never wanted it to be a book anyway.  So if anybody has money ideas, aside from Patreon, let me know!   

Saturday, March 11, 2017

It's not our fault!

One of the privileges I've experienced in writing this blog is hearing from others who have suffered through cancer - either themselves or through a relative. I hear from all stages and all types, people with all sorts of suffering from this disease.

One woman's letter particularly struck me, because it is something many of us feel at one point or another. With her permission, and some identifying information removed, I am sharing it:

"I came across your blog and found the most helpful post regarding early detection and awareness and just wanted to reach out and say thank you.  I have stage 4 metastatic breast cancer in lungs, bones, and liver.  I was diagnosed in September of 2014.  I have been battling horrific guilt in addition to the trauma of the diagnosis because I had been a busy full time working mom with kids who let my health appts. lapse. 

I had no symptoms whatsoever.  I had always had gynecological check ups through my mid forties and had no issues.  In my late forties my favorite doctor died and I didn't replace him.  I became complacent and let my health care lapse. I thought I was safe to start again in my fifties.  Not one biological woman relative had breast cancer in my family except a cousin whose mother not related to me had it. However my father had died of cancer in his early 70s, and so there were parts of me that were afraid of the screenings and delving too far into it.  But I was not worried about breast cancer.  So I just put my head in the sand, lived my busy life, and ignored it. 

In February of 2014 I had severe pain in my rib cage.  I could barely breath. I thought it was a heart attack.  My son took me to the ER.  My heart was fine.  They performed blood tests and ultra sounds of all my major organs.  Everything came out clean.  They thought is was an inflammation in the chest wall.  I did anti inflammatory meds and it disappeared in a few days.  So I thought I had a clean bill of health. 

 In August I was jogging, losing weight, eating healthy. But I had a chronic annoying cough. Then I got what appeared to be pneumonia.  Family doctor put me on antibiotics. (while at the doctor, ironically I made an appt. for my first mammogram). In the meantime, I kept getting worse regardless of antibiotics.  Memorial day weekend after the doctor reviewed a chest xray, I was sent to the ER.  My right lung was almost 2/3 filled with fluid.  I had low oxygen.  I was at risk for heart failure.  In the ER after blood tests, the word cancer was uttered.  The nightmare began.  I had stage 4 metastatic breast cancer in lungs and bones. It has since progressed to the liver. When I went to the breast center for a biopsy to determine the type for planning treatment, I was treated like a pariah because I had no screenings. 

I was consumed with guilt and rage at myself in addition to the sheer sorrow and shock that just levels you to the core.   I believed at that point that I would have been cured if I had not been so stupid.  I thought I let my family down, and I deserved to die.  I didn't deserve the care and the treatments and the help that those women who diligently kept up their appts. deserved. 

Then I began to read about the fact that no matter how much "preventative" measures women took, and no matter what diets and chemos and follow ups they had, it still spread in those who did everything "right".  I learned for the first time that some cancers never spread and we do not know why others do. Some women who do everything "wrong" as well as never go to the doctor will never get cancer.   It is a complex cellular biology that is not under the control of the victim and is not the fault of the victim.  And almost no one understands that we are not looking at the spread and cure as profoundly as we are looking at "catching it early".  People think it's a cold that if you catch it early and take the right medicine you can prevent it worsening.  People have no idea that it just does not work like that. 

 I am also somewhat disappointed with the women who brag about their "beating it" and will say that early detection saved their life, without acknowledging the women who are still dying. That mindset would seem to blame those who have late stage disease as having missed something despite doing all they could.  It definitely shames and blames those of us who didn't.

So thank you for speaking up and shedding light on this subject and helping those of us who are suffering to be able to let go of at least the guilt portion of everything else we have to deal with.  I am lucky for now.  I am still working and feeling relatively normal at this point in time on Afinitor/Aromasin.  I was on 6 months of weekly intravenous chemo last year, but now I have my hair back and this is a refreshing break that I can only hope will continue to work for awhile.... PLEASE.  We can only hope. I so hope you are "well" at this point in your life. 
Thank you for sharing your story. Stage 4 is a lonely place without those of you who take the time to reach out."

She rightly came to the conclusion that nothing that happened to her was her fault,  but many women do not figure that out and feel tremendous guilt.  If that is you, let me tell you here and now and in no unertain terms - getting cancer, at any stage, is NOT YOUR FAULT.

There is so much misinformation about breast cancer out there, and so much of it lays the guilt for this disease squarely on the sufferer.  Many people will blame you, unintentionally but surely, as part of their own belief system that if they do everything "right" it won't happen to them.  They are afraid, so they want to know they are not like you and they can't get it.  They ask you questions, like "didn't you get screenings?  Do you smoke?  Do you drink?"  They're trying to figure out what you did wrong and they are doing right so they can put themselves in the "no cancer" box.  It's just fear, but it makes you feel guilty.  Don't let it.

Being consumed with guilt is normal when you face this diagnosis, but let me reassure you - as one who has met thousands of cancer patients - nothing you did caused your breast cancer.  You didn't wear bras too tightly, you didn't eat too many cupcakes, not exercising didn't cause this disease. Thin, healthy, clean eaters get breast cancer and people who are overweight get it.  Men get it.  All you need is some breast tissue. As for screenings, they are even becoming controversial.  Many scientists and researchers now believe that mammograms aren't necessary in a woman with no history until age 50, and interestingly, many studies show that woman will find their own cancers at about the same time as a mammogram does anyway.  Once cancer is found, whether at Stage 1 or 3c, it can spread and become Stage 4, a year later or ten years later, and nobody has any clue why.  And, in 10 to 15% of people, like the letter writer, it is found at Stage 4 (called de novo).

A mammogram is a screening tool, it's not a magic cure.

We human beings very much dislike the idea of things happening without a reason. Religious people believe in God's will.  The rest of us put it on ourselves.  We forget all the obese people who never got cancer, all the alcoholics who died in their 80s without a cancer cell sneaking in - the drug addicts or homeless who are cancer-free.  There are people who don't see doctors for decades, and who have clean bills of health when they do go.  Then there is the one who skips an appointment or two and gets the worst news possible. There are babies and children who have had no time to do anything "wrong" who get cancer.  Life is full of mysteries and tragedies.  It is truly biological chaos and none of it is our fault.

One day, soon I believe, they will unlock the mystery of metastatic cancer.  Researchers will come to understand which cancers take up residence in other parts of the body and which ones don't.  And when they do, I believe they will discover that it is not anybody's fault and lifestyle is not involved. It will be a complicated interaction of proteins and biomarkers - it just happens.

The world is full of the inexplicable.   Don't feel guilty when one of those inexplicable things happens to you.

Thank you Tracy, Jennifer, Patsy for your generous donations.   I am honored that something I've written has helped you enough to want to contribute.

Also, for those who haven't found me yet, I am on Instagram where I post photos, mainly of my dogs, so follow me at butdoctorihatepin.  You can also find me on SnapChat, add butdoctorihatepink.  My tendency is to play with all the filters at once and not really post anything interesting but man, I love those filters!  Except the dog one, that needs to go now, don't you all think?  Of course, find me on facebook at facebook.com/butdoctorihatepink.  I post any news I may have there.