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.

https://www.gofundme.com/Helping-Martin



~~~~~~~~

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.





Sunday, January 29, 2017

The start of 2017

Did you have a nice Christmas?

Do you even remember Christmas?

Seems like forever ago, doesn't it?  I was going to blog for the holidays, but my son came home from college without his laptop, so I gave him mine. He spent 3 weeks here, which plugged my heart right back in its appropriate socket. It meant I didn't see my laptop for any of those weeks, but it was an excellent trade-off.  For you moms whose kids haven't left yet, you have no idea how good it is to just hear them laughing in their bedroom, or grabbing a glass of milk - normal things that you miss intensely once they are gone.

I think it's safe to say that I'm never going to adjust to being an empty-nester.

Still, having only my phone, blogging wasn't going to happen, and even keeping up with my facebook page was difficult.  Of course, I was busy with Christmassy stuff: shopping and entertaining, and so I didn't worry about being online much.  I try to post on facebook at least once a week so people know I'm still alive (seriously) but other than that,  I wasn't online and I didn't read anybody else's updates.  I was/am woefully out of date.

My son went back to school the first week of of the month, and while I got my laptop back, I also got what was likely a norovirus - an illness which pretty much stole my January.

The story:  At 5:00 am New Year's Day my son called - he'd been spending the night with some friends.  I (eventually) answered his call, not expecting or really hearing anything at that hour.  When it finally made sense that my phone was ringing and texts were beeping, we connected.  He told me he was vomiting uncontrollably and could we please come get him because he couldn't drive, and also added he had not been drinking.  (Which never crossed my mind, by the way.)

So my husband and I went to retrieve him and the car.  The poor kid spent the rest of the day vomiting, with both my husband and myself taking turns caring for him.  We took no precautions because we believed he had food poisoning.  I felt horrible he was sick but again, my motherly instincts took over and I was feeling his forehead, bringing him hotpacks for his aching back and cleaning up puke buckets.  He's 19, so he hated being sick, but he recovered quickly.

But of course, it wasn't food poisoning.  The next day, my husband got sick.  I knew then it was coming for me.  I did my nursing duties for my husband, which mostly consisted of bringing him water and soup, but this time, I tried to stay away.  Fortunately, he is not a needy patient.

Oddly, even with my weakened immune system, I didn't get it. I was able to take my son to the airport, and pretty much felt quite fine.  They were recovered and I hadn't even gotten sick.  I was starting to believe that I had some magic that would prevent me from getting this highly contagious disease.

That magic?  It's called denial.

Wednesday the fourth, I was still healthy so I went to chemo. In retrospect, that was a mistake, but I'd skipped the previous week because of family being home, and I didn't want to skip again without reason.  I came home from chemo and ate a normal dinner.  I still hadn't disinfected my laptop, so was using my phone, and as my husband watched basketball,  I watched a horrible video of a child who hung herself while live streaming - a video which obviously upset me terribly. (I thought it was phony or I wouldn't have watched it.)  When the game was over, my husband and I watched some TV.  At 11:00 pm,  all GI hell broke loose.

I vomited, but this was not your regular vomiting, it was never-ending projectile vomiting.  I could have knocked some bowling balls with the power of this puke.  Not to be crass, (too late, I know) but this vomit wasn't your normal puke, of which as a cancer patient, I am quite familiar.  It clearly came from the depths of hell, with a black taste no amount of tooth-brushing would remove. Everything also smelled horrible, so bad that regular vomit would have smelled like perfume. But the smell was not limited to things that emitted from me - everything smelled bad, my husband's soap, the walls - and so I believe this disease affected my sense of smell.  My son had said something similar.  I comforted myself with the thought that my family was sick for a day and rested a day and then got better quickly, so I assumed that's what would happen to me.

Nope.  I forgot, I am not like them.

I vomited for two days straight and was eventually left too weak to get up, and I pulled out my regular puke bucket from under my bed. I vomited, I slept, I tossed and turned and threw-up again. All the while, that young girl's horrific suicide swirled through my brain uncontrollably. I was upset for her family, for those who knew her, even for those who inadvertently watched it, like me. You know how when you are sick you can't really control your brain?  I thought about it, dreamt about it and in-between vomiting, I suffered for her loved ones.  I was troubled not only physically, but mentally. She haunted me.

After the vomiting stopped, I didn't feel better.  I was unable to stand. My legs literally would not hold me. It was as bad as the sepsis recovery.  Waves of nausea and pain continued throughout my stomach to the point I couldn't get down anti-nausea or pain meds.  The weakness was troubling.  I tried to drink water to stay hydrated and eat to bring strength back, but no go. Everything smelled bad and set off my nausea.  Not to mention, I also had overwhelming heartburn, which I always get with this chemo, but this time was like flames; like my stomach was full of hot, boiling oil.

I was not getting better and even vomited again on day four when I thought that part was over.  I was in a dream-like state.  Apparently, there was a terrible storm which knocked down trees and fences, and I'm terrified of storms, but I missed it entirely.  After the fifth day without being able to get out of bed or eat, with my life being about sheets swirled around my legs,  blankets all twisted into lumps, tangled pulled hair, bad dreams about children, and everything causing me nausea,  I decided I needed to go get IV fluids and IV anti-nausea meds and see if it would get me over the hump.

I gathered strength and called my oncologist's office and talked to the nurses, and they said come in. It seemed like climbing Mt. Everest to get there, but I felt that if I did not, I was going to be in that bed forever and my forever wasn't going to be long.  My husband took me to my infusion clinic, where they were quite concerned when they saw me.  I wasn't exactly the picture of health, with my straggly hair pulled back, sweat clothes, no makeup, circles under my eyes and a weight loss of 8 pounds (on a person who weighed 98, that shows).  One nurse wanted me to go straight to the hospital but I convinced her that if I was ill the next day, I would but for now, let's just try it my way. In short, I wasn't going to go. So they gave me IV saline, IV ativan, and the anti-nausea Kytril, again through IV.

(Disclaimer:  Some know that I do not go to ER if I can help it.  I don't recommend that others follow my lead and you do what's best for you -  but I am not going to the hospital, period, unless I am admitted for a surgery or something. I would rather die in my bed than sit in an ER and catch everybody else's disease as well as my own. I feel like I've lived a long time with this disease because I do not go to the ER.  It's a quirk of mine - but I nope myself right out of the idea of the ER, every time.)

The next day, after the fluids, I did get up for a couple hours to watch some TV.  I finished off Shameless which helped take my mind off that tragic video.  I was finally able to control my thoughts a bit better.  And the next day, a few more hours up, and I was able to completely wash myself, scrub my hair, and change my sheets. I was finally healing.

Slowly I got better, day-by-day, and I am finally pretty much back to .... normal. My normal, which is still not normal. My normal now includes the realization that I am the type of person who dies of the flu.  (Which is why I get a flu shot).  In fact, metastatic cancer may not be the thing that actually kills me - it may be something exactly like this.

Finally out of bed for a full day, I had to catch up with all the chores I'd missed.  We did not take our tree down until about the 15th, and our habit is to do it New Year's Day. But in reality, my husband did it as I was still too weak. But at least I was able to remind him.

Naturally, my blood tests came out abnormal including my potassium and liver function tests.  My doctor believes the liver function is from the illness, and so do I so I am not worried the disease is back.

I am having trouble getting back on track.  I feel like I have missed a full month of 2017 already.  I am not caught up on the goings on of my friends, or my pages, or the other chores I needed to do - but now, at least,  I know I will catch up.

This time.

I am left with fatigue, shortness of breath, am light-headed, have some heart palpitations and a bizarre craving for popsicles. To the point that I am eating about 8 a day!  (Whole fruit to be sure,  but they still are nothing but sugar). All of those things are symptoms of anemia, except the popsicles is a twist. Ice eating is the norm for iron-deficient anemics.  I have been anemic for many years, and never had the ice symptom even when I needed a blood transfusion, but again, perhaps that has to do with the type of anemia I have which is not iron deficient - or wasn't.  Anyway, my recent tests didn't show that my anemia was any worse than it had been before.  But we will see what my next ones show and I'll bring it up with my oncologist if it continues.

Poor doctor, what does he think of when he asks, "How you are this month?" and he hears, "Doctor, I seem to have a popsicle addiction, more specifically, coconut cream popsicles"  does he think, "I went to medical school and got $200,000 in debt to hear that somebody eats too many popsicles?"

Anyway, the one I eat the most is 120 calories, so even though it's junk food, I'll probably gain the weight I lost back quickly.

I guess the moral of this boring story is that if you have Stage 4 cancer and are on chemo, and have been on chemo for the better part of a decade, even if you are in remission,  you should never take for granted your "health."  Because, you are really only one illness away from the end. Things other people can recover from easily may cause your death.

It was a nasty little reminder for 2017.

I need to try to stay healthy and away from germs, however one manages that.  I already stay out of grocery stores, which are germ-factories, especially now that it's the law that people have to bring their own disgusting bags from home.  I do most of my shopping online. (Reminder: click the Amazon link to the right before your next shopping trip, and I get a tiny percentage of what you purchase).

But I can't lose contact with people entirely so there is some risk no matter what.

I surely wish the US was like Japan and China, in that wearing masks when you are sick is not only the norm, but trendy.

People in Tokyo Being Sensible



People in the US are stared at




I do know I owe people articles, promotions and I have things to mail.  I am sorry for the delay but I will get to you.  I promise.  At least, as much as I CAN promise.....

Happy 2017!