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.

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!

Thursday, December 1, 2016

My Staycation Box - Review

According to movies, according to TV, according to our friends, having cancer means we are supposed to have a "bucket list."   On that bucket list is all the things we should have done when healthy but didn't.  For example - travel. Travel is a big one and most people, when they hear about our diagnosis, immediately suggest that we take a trip to relax and get away.  

The one thing they forget is that when you have cancer - you are sick.

It's true that when you are newly diagnosed you may still feel well, but you simply don't have time to hit the beach, with the constant doctor's appointments and the tests.  You can't take a relaxing trip when you have four doctor's appointments a week.  Later, you will be in treatment.  Chemo, radiation, surgery - whatever it might be, you often aren't feeling up to par and don't want to waste money to sleep in a hotel as opposed to home.

Travel is not a simple task for somebody who finds it hard to get up to go to the bathroom, who sleeps 14 hours a day, and who has discomfort when putting dishes in the dishwasher.  And, don't forget that we likely have low white blood counts that make us susceptible to disease (airplanes, ick), low red counts that make us anemic (meaning an extra 3 hours of sleep a day), surgeries that make us unable to use an overhead compartment. (Try to get the flight attendant through the crowd to help you). Insurance, expenses, chemo, and surgery schedules all get in the way of travel as a bucket list item. Not to mention, most of us don't want to get sick or have a problem requiring hospitalization while in a foreign country.  

Try to say "constipation" in Russian.

The truth is, for most people newly diagnosed with cancer, travel will suddenly become a mountain to overcome rather than an enjoyable way to relax, and that bucket? Well, it will stay full.

Still, the desire to go to exotic locales lives in all of us. Including me.  I have been on chemo for 7 years now, and cannot imagine being able to go someplace out of the US.  If I do travel, which is rare, I have to plan trips between medication refills, chemo infusions, during times I have hopes of feeling normal (which is a rarity these days), and I stay within my time zone. Still, I dream of European cities and exotic beaches.  So imagine how excited I was to find a new subscription box that can give me a taste of travel without having to leave my home.  Better than that - it is a perfect gift for somebody newly diagnosed with cancer.

So what is it?

It is a subscription box called My Staycation Box.  If you don't know what subscription boxes are, you are missing out.  You pay a monthly or bimonthly fee (in this case, only $40.00) and a box full of goodies based on your interests is automatically sent to you.  There are many categories - I subscribe to two make-up boxes that let me try new things in the land of make-up,  and an art box that gives me new tools and an art project to play with. In the past I also have gotten scrapbook boxes but I was getting too much paper to deal with.  I have given ones as gifts - a stepdaughter got new socks each month, a son got Japanese candies.

The bottom line is that subscription boxes are a really fun way to treat yourself or somebody else with a surprise.

 And now there is a travel-based one for those who can't travel, which is most of us sickies, called "My Staycation Box."

I was sent one to test out, as it is brand new, and I have to say, I adored it and can totally see the potential. The woman who is starting the company had a mother with cancer, so she understood the desire to travel without the ability.   Of course, you don't have to be sick to enjoy it but for my readers it's perfect.  With the contents inside, you can make a fun travel day right at home, and give the gift of laughter and a foreign place without ever leaving home.

We all know that when we are first diagnosed, we want to be anywhere but where we are, and this My Staycation Box can help dream your life away, along with a little help with some friends.

So what is in it?  I was sent their first box, which was Jamaica.  There is a different place every time, the next one is Italy.

Here is my little trip to Jamaica:

Wait.....First, let me show you the outside of the box.  It is immediately relaxing, isn't it?

The top of the box


Your destination for the month

So, what is inside to help you on your journey?

When you open it up, right on top is a Jamaican Flag.

The flag of Jamaica

As a clever touch, the inside tissue paper is made up of the flag colors.

Then there is a postcard that tells you about the place you are going to "travel" to.  However, it's not a normal postcard - on the back, it tells you how best to use the items in the box, or "Plot Your Staycation." There is also information on the next staycation as well as information on how to win a Staycation of your own using social media.

So here's how my husband and I plotted our trip:

Daydream time

I sat and read the guidebook, and dreamt of the spot I'd go if I was there.  There are plenty of photos and destinations that help your imagination along.  In the background my husband put on some reggae, which came in the box.

Next up, snack time. I continued reading the guidebook while having a few plaintain chips (delicious) and continued to listen to  Jamaican singer Bob Marley on CD.  More than 20 years ago I spent time in Jamaica, and Reggae is the sound of the island for sure and Marley is the King.

Plaintain Chips and a CD

Now that you have the music going and had a snack, it may be time to take a relaxing bath to get ready for dinner.   I took a nice hot bath while my husband prepared our dinner.

Jamaican Hop Sop and Jamaican Rum Punch Room Spray

Red Stripe Beer is big in Jamaica - I think it's the official drink of the island.  But sending beer is probably not legal so My Staycation Box found the next best thing - beer soap!  It is made from Jamaican Hops, but I'm happy to say that it smells more floral than beery.

After you are refreshed from your tub, spray your house with some Rum Punch Room Spray and have the smell of the islands in your house.
It's not Jamaica without Jerk Chicken!

What is for dinner?  You know it - Jerk Chicken!  It couldn't be easier, which my husband was grateful for.  Just pour the sauce over the chicken and serve with steamed rice and a veggie.  It was very good and brought back my days of eating Jerk everything Jamaican style.

I was warm, full, clean, the house smelt good and I had a relaxing day thinking about beaches and islands.  Cancer was not on my mind.

So there you have it - a mini-trip to Jamaica within the comfort of your own home.  This is truly a fun way to surprise a friend who has been diagnosed and cannot get away.

The full box

One of the most frequent questions I get is "What do I give my friend/mother/sister who has just been diagnosed with cancer?"  I often say "you."  You are what they want, some normalcy and some laughter.  They want to get away from cancer and have an enjoyable moment as their life has been turned upside down.  

A kit like this is a starter to an entertaining day that you can create with somebody who is currently over the moon with worry and fear.  I can honestly recommend this box as a super fun activity, whether you have cancer or not.  But don't stop with the box if possible.  On the day it arrives, go over, put on music, plan your "trip"' together and if your kit contains a meal-base, use it.  Take this trip with your friend or family.  

If you are far away though, and of course, many of us are far from friends and family, sending a box like this is something your sick friend can look forward to receiving while they undergo cancer treatment. I can't tell you how much I appreciated the little gifts and things I received back in those early days that let me know people cared.  Give them their own "bucket list."  This is a thoughtful gift they will appreciate and look forward to.

Truly, what we cancer patients want and need most when we hear that fearsome diagnosis is distraction and friends.  This MyStaycationBox offers both.

This would also be a great gift for that non-sick but hard to shop for person on your list.  As a cancer blogger, most of what I say has to do with how a cancer patient would react.  But I do believe a travel-lover would like this box, or an elderly person or a young person who hasn't decided where to go.  It's just an all-around cool thing.

Next trip - Italy!  You will need to order by December 18th to get it in January.  (If you want to give it as a Christmas gift, just wrap up a postcard of Italy (or Italian wine with an instruction not to drink it) and on the back, write that their gift will arrive mid-January.  Say no more and leave them guessing!)

My readers get a coupon code, with 10% off the first subscription to My Staycation Box.  The code is AnnSentMe10.  Just go to MyStaycationBox.com and click on the shop tab.  There is also an option to purchase a one-time box.

Have fun. If you try it, let me know!

Just to keep things real, I want to share that I did not paid for this review, nor do I get anything for the coupon code.   I only got the items in the box so I could tell you about them. So you can trust - as always - that I will never say anything that I don't believe.

Saturday, October 22, 2016

Vickie Young Wen

My friend Sandy had just died, and I was terribly sad. Sandy was one of the first women I became close to as a metster.  Sandy and I had been diagnosed around the same time, or maybe she was ahead of me, I no longer remember as she's been gone a few years.  We became online friends, very good friends, very quickly. After the first "reach out," we spent all day chatting with each other - hundreds of messages.  Day after day.  It was natural and intense.

When she died, I was very sad, and missed her a lot, and posted about it.

The first time I remember Vickie Young Wen was when she reached out to me in friendship.  She acknowledged my loss and offered to chat with me the way I had with Sandy.

I had known of Vickie already, probably had talked to her although this was the first conversation that stuck.  I liked her, but I thought, for me,  she might be a bit ... nice.  I knew about her love of God and her desire to live by religious principles and as you may know by now, I am an atheist who has no interest in changing. I may have stereotyped her as the type of Christian who feels they must convert me, and while I totally respect everybody's belief system, I also want mine respected too.

I also am up for a bit of snark in my private conversations, or was.  Sandy and I had humor that was a bit twisted by normal standards.  I thought Vickie might be too serious.

I believe, as honest as I am, I even shared those sentiments with her.

Looking back, of course,  I think the truth is I wasn't ready for another friendship revolving around metastatic cancer as I was still grieving Sandy.  After all, Sandy and I didn't have gossipy or negative conversations, just a bit of gallows humor.  We only talked about our lives living with this disease  - and Sandy was also religious, in the Jewish faith, one I guess I'm more comfortable with.  (Psychologically, I know why - my Christian mom made me go to church against my will - a non-believer from the start -  and my Jewish father never mentioned religion).

Vickie did not take my veiled "I'm not ready" as a rejection.  She seemed to understand.  She had read my blog and had a sense of who I was.   She started chatting with me online, just chit-chat, about pink, etc.  I responded because I usually do, and it was at a time when I spent most of my time in front of a computer.  Conversations got deeper, and then, she made overtures to meet in person.  She was once in Sacramento and wanted to meet, but it was a time I had something else going on.  And, it wasn't an important thing; to my everlasting regret, I could have cancelled whatever it was.  I just didn't feel like meeting anybody.  But I'd given her my address and when I came home, I found a little package from her on my doorstep, an item I have kept.

She kept communicating, I kept responding.  We sent some cards and things to each other and I started to consider her a friend, practically against my will.

She came to my city again and this time we met.  We spent a sunny day having coffee and cake at a bakery and doing a bit of shopping afterwards.  She was funny, we had a lot to say to each other and were able to share exactly what living with this disease is.  We talked about our families (both of us are full of love for them) and shared our mets stories, all those details you can't share online.  We just talked.

Vickie and I meeting
Now that I considered her a good friend, we began talking online more frequently, and she and I both were on the same page about pink, of course.  She began writing about it more intensely and sometimes asked me to proofread things before she posted them.  She was such a good writer, she didn't need help.

I wanted to do some public online video chats with her and another woman and Vickie was into with the idea, saying she would make the 2 hour drive to come to my house to start right away.  It never happened... but it's because of me.  I had excuses: my house wasn't clean enough and what if she lived in a really nice one and would look down on me for mine or what if the dog jumped on her and hurt her and mainly, I was too tired.... I was always so tired.  She had more passion for education than I do, that is clear.  But to my credit, a big consideration in saying "not yet"  was that I didn't want her, with her diseased bones,  to sit in the car for two hours to get here, when I hadn't thought out what exactly would happen yet.  I did worry about her ignoring her disease and going too fast.

Vickie had a ton of energy.  She was diagnosed with bone mets after my liver mets diagnosis, in 2012, I think, but despite her having more disease,  I was always the sick one.  I was always stunned that she had no pain, when I live in pain.  How is that possible?   She had buckets of life and never seemed tired.  She was passionate about educating people about pink and mets.  In her vibrant way, she found many niches of support and friendship.  She was involved in a group of woman from Australia who gave her a lot of comfort.  She talked about them often.

She came up with the tag that I now see a lot of women using #Iwantmorethanapinkribbon.  She named her blog that.  I thought it was too long and would never be a hashtag people used.  I was wrong, she was right.

I was on the panel of a group of health advocates from different disease areas sponsored by a pharmaceutical company, and I was asked to invite breast cancer patients in social media to their first ever conference.  The first person I thought of was Vickie.  She had just started her blog (although her CaringBridge had been around a while) but I knew that she would grow it quickly and had a lot to say and I thought this conference might help her say it effectively.  Thankfully, she agreed to go and we met again, this time in New Jersey.  We spent most of the time together.  She took advantage of being back east and after the conference, took her son on a trip to New York, so I got to say hello to him.

Healthevoices 2015, Vickie on the left
Her children are both still in high school.  She was intensely and incredibly proud of them and her husband Art as well.  She spoke highly of so many people, I couldn't list them all.  She had a PCP physician as a friend, and researchers, educators, and many metastatic patients. Every October, she put out information for the masses. One year, she posted every day in October a myth about breast cancer and educated thousands with her 31 posts.

When was the last time I saw her? It couldn't have been only twice, could it?  She was such a presence in my life that I can't believe it. My memory is shot and my old phone is dead, with all photos. Only these two exist.  So I don't know, but what I do know is whoever invented the term "force of nature" must have met Vickie.

I guess I didn't need to see her to believe she was around. She was always in my thoughts.  She, of course, did not replace Sandy. I've learned that it's not about replacing people.  Each has their own space in our hearts, and that space is infinite.  She just became another close metster friend, one who I could share the hardships of this disease with.

Then ... I took her for granted.

No, not her.

Her health.

At some point, I needed a break from mets.  I was feeling really good and just wasn't into being online and hearing about cancer.  I stayed in minimal touch with my group, and I touched in with her, but not frequently, I could go a couple weeks without talking.   She told me she wasn't doing well, that cancer had entered her brain. She had infections in her eye, and episodes of pain.   I told her she'd survive it.  I knew many who had, and Vickie?  Vickie was the healthy one, she wasn't going to die before me. She was certainly going to see her kids graduate from high school, as I had done. She was going to live ten years with mets.

That has been my plan, but it never was hers. She, practical woman, did not allow herself that denial.

Our long conversations ended, and I barely noticed because I wasn't spending time online, and then, my iPhone died all while she was getting sicker.  Because my phone crashed, and it took a month to get a new one, and I lost passwords,  I could not log in to her Caring Bridge site, although I tried.  (At the end, I made a new account so I could read it.)  Although I knew of her problems,  I also read about her latest PET scan that she said was good, that there was only a tiny area in her brain and her spinal mets were the same as they had been.  That's what I hung on to, ignoring the decline in other areas.

October 3rd, she showed me a photo of a pen she made, like the ones I've sold.  A crafter, she found the pen seller and made her own.  It was gorgeous.  Our last back and forth conversation, on October 10, was just about an acquaintance of ours (and one who I also invited to the conference and wanted to do the talks with). She had been diagnosed with mets too, lived several years on chemo and then discovered, unbelievably - astonishingly - that she had sarcoidosis and not cancer, just like a House episode.  I messaged Vickie and asked if she heard and said how wonderful and remarkable it was, and Vickie said, "I can't even imagine the burden of death being lifted from her...wow.  Such good news."

It was so fitting that the last thing she said to me was how happy she was about somebody else's good news.  That, in a nutshell, is Vickie.

The sad thing for me was that we acknowledged death together.  Talked about it many times.  And when it was near, I denied it could happen to her. I didn't want to think it.  She didn't think she would die right away, of course, or she wouldn't have made her pen. But she was sick.  And, it became apparent the last two weeks,  and she was told that she was unlikely to come out when she went into the hospital. (She did get to die at home, with her family at her side).  She knew things weren't good but I didn't believe, after all our reality. She used the phrase dire.  The last thing I said - exactly one week ago - was "What is happening friend?  What is dire?"

I got no response.

She died October 20.

Another friendship gone.  Again, I am standing alone in this disease, surviving when my friends all die.

I've been five years a metster.  Seven years with this disease but five years living with the knowledge my time is short.  But I am able to pretend that isn't the case, and I make friends in my situation.  And one by one, they die. I know that it will be me, too, and each friend I lose makes me feel closer to death.

Vickie was bright, eager, incredibly intelligent.  A natural educator and a born leader. Enthusiastic, full of ideas and energy. A woman who loved her life, who loved her family and knew how important it was to be friends with people, and knew how to win them over.  She talked a lot out of sheer knowledge and hugged a lot out of love.   It is astounding to me that she is gone and I'm here.

She made me her friend, would not let me go.  Now,  I have to let her go.

My heart, my love, my wishes for peace to to her husband, her children, her mother in law and all her friends.  Know that she told me about you in the most loving way possible.  I know that there are many people all sharing their pieces of Vickie all over the internet and in homes.  Some of them may sound unlike the Vickie that others know.  That is the beauty of humanity, how we can come together and share parts of ourselves with different people, and it makes a beautiful whole.

She was such a good person, and taught those who would listen so much.  The world is surely a sadder place for her being gone.

Love you Vickie, always.

Life goes on, I have a friend from Utah visiting me.  Please forgive this hastily written eulogy and any typos,  as I don't have time to write.  I hope that my love comes through loud and clear, badly written as it is.