Sad news

A few days ago, Kurt Lee, whom I'd written about here, here and in an op-ed in the Sacramento Bee, passed away.  It was announced on facebook, and I debated whether or not to put it in this blog.  Then I remembered that many people did go on the registry because of my post about him, and they may want to know what happened; my not wanting to say the words doesn't make it not be true.  It seems our stories overlapped a bit, and I feel tied into him.    Unfortunately, he got graft vs. host disease and his body couldn't overcome it.  It was shocking news, and I'm sick to think about it.

Cancer is a terrible beast and took one of our future's best and brightest.  Kurt handled every curveball thrown at him, and there were many, with grace and dignity.  I never doubted that next year, he'd be walking the halls of his high school, laughing with the other kids, participating in SciOly or whatever interested him.  My heart is incredibly sad for his family and their great loss.  I can't believe that kid who sat and played video games with my son is never going to do it again, and I can only imagine their tremendous grief.  I also can't believe I am still here, being treated, fighting for more time, when he is not.  He doesn't seem fair, even to me.

You don't know it, but you lost something too as this was a kind, decent young man who would have given more to the world than he took from it.

So, in his honor,  I hope that you will consider becoming a marrow donor, and be the giver that he didn't get the time to be.  Start by visiting the National Registry and signing up.

RIP Kurt.

~~~~~




Yesterday,  I had the fiducial placement in preparation for my radiation treatment. More about that later.

SBRT - Decision Made!

Well, where did you stand?

Did you guess "yes, she'd do it?"

Or "no, she wouldn't?"

Oh come on, you people know me better than that.  Of course I'm going with the latest and greatest in technical advances - I am one who got her iPhone 1-5 on the first days available, after all.  (And, the 5 is already full, darn it, I knew I should have gone with the 64 gig.)

After sort of speaking to my oncologist, who said it wasn't his specialty but that chemo was destroying my bone marrow and it couldn't take much more and he thought this was my best shot, and then talking to the Radiation Oncologist, who assured me that he thought I would do quite well, and that he and his team had discussed my case and he thought I would not be left worse off than I am now (my big fear) and who answered my questions, I decided to do the SBRT.

So here is the schedule so far:

June 7th, I have Fiducial Insertion.  (No, that does not mean I have a hot date with Donald Trump).  They will be putting little pure gold coils into the liver around the tumor, which will be super fun when I go through security at the airport.  These coils will help track the tumor through my breathing cycle so the machine doesn't send a shot of radiation through the wrong place when I inhale.   The fiducial marker insertion, he said, would feel just like a liver biopsy.

Uh oh.

I got a copy of the surgical report after my biopsy and they had written right into the report that I had experienced undue pain, so it's not just my word.   I am going to contact them ahead of time, ask them to read it and see what they had given me and then up it tenfold.  I'll tell them that I want more medication, better medication, different medication - something, anything, not to feel that I've been stabbed again.  In the ensuing years since that biopsy and today, I have been put on pain management medication, have developed certain tolerances, and whatever didn't work then surely won't work now.  

I know this must be done but they also must help me manage it better than the last time, don't you think?  Somewhere in the patient's Bill of Rights there has to be something about not stabbing a patient's vital organs without proper medication.

June 17th, after the fiducials settle, I'll have a PET/CT scan.  Ho hum.  After that, they start the planning process, which I'm sure includes very technical stuff involving Gy doses and positioning and the like.  I read that they create some sort of foam/bead bed that is designed to your body and keeps you in the same position each time, which should be fun.  Maybe I can make a "bead angel."  I will have five treatments, or fractions, probably starting the last week of June.   Then, I'll be done and we'll wait to see if it breaks up the tumor, via another scan in a few months.

Of course, it is possible that at this point, after the marker placement and scans they could say I am no longer a candidate - they may see cancer encroaching on the portal vein or something else disturbing.  

But if it's a go, here are the possibilities:

Best Case "One Can Always Dream for a Miracle" Scenario:  It destroys my tumor, and nothing ever grows back. I'm cured of metastatic breast cancer.  That happens approximately never, but I could be one of the first, you never know.  Here is one study where they called the woman cured; the only thing is, they only followed her for only two years.  That's one way to get the result you want. "Hey, we saw this 70 year old dude who didn't die in 2 years, that meant he lived forever!"    Personally, I wish I knew how she was doing now and if she's till "cured."   I'm guessing no but I'm a cynic who has never heard of anybody surviving this disease to live a normal lifespan.

Next Case, Most Likely, Good Scenario: It destroys the tumor for a while. I get to go off chemo for a year or two. (Although will still be on Zometa and Herceptin and ....perjeta? Not sure about that one.)     I get a break, get to do the things I want to do with my family like go college shopping with my son, see him graduate, decorate his college dorm room, and do all that with some modicum of energy and ability before the disease comes back and I must start chemo again.   This is what has been published about SBRT for oligometastatic breast cancer:    4-year actuarial outcomes were: overall survival of 59%, progression-free survival of 38% and lesion local control of 89%. 

Bad Case Scenario:  I do all this but it doesn't kill the tumor and I'm still on chemo and now with a radiated liver having to process these drugs.  I pee florescent and we have to hire guys from the Fukushima Daiichi Plant to clean our bathroom.

Worst Case Scenerio:  Something goes wrong, a beam hits the portal vein, liver function disappears and this blog finally ends.

A moment of silence for that.

So, there you have it.  Except for the fiducial placement, I'm okay with this plan.  It is a relief to have made the decision, whatever happens.


.

Stereotactic Radiation - Decisions

My last oncologist appointment was interesting.  We were discussing how difficult Gemzar is for me and how my blood doesn't seem to recover anymore.   My doctor stood up and said, "I'm going to make a phone call about you" and left the room.

I was left wondering who he was going to call about me.   President Obama to discuss me in context of health reform?  Angelina Jolie in the context of prevention?  His wife as an "I can't believe my patient said this" conversation?

Who?

He came back in and said that he called a doctor in Radiation Oncology to see if I qualified for SBRT, which is short for Stereotactic Body Radiation Therapy.  He hadn't reached the doctor but said he'd try again and get me a consult.

SBRT is like Gamma Knife, a more common term that you might be familiar with.  There are several different names for it, but basically, it is a highly focused beam of radiation designed to kill tumors.

Killing tumors sounds so easy, doesn't it?  

I wish.

Within a couple of days, I got a call for a consultation.  The radiation oncologist and I had a nice chat about my history, as well as some mutual friends we share,  and then he said he thought that I would be a candidate, my tumor is the size they like, but that he would meet with a group of doctors and discuss my case.  They would contact me in about a week.   He did say that because my tumor was so close to the portal vein, "very bad" things could happen, and also said that it was "risky."  He explained the process and then he handed me a tri-fold brochure and introduced me to his assistant, whom I am to call with questions - and left.

I figured I had some time to research this and talk to others who may have had it and get some kind of idea whether this is in my best interests, or if it's just going to make me weaker.  Weaker, at this stage, would not be good.  I am having whole days where I can't get out of bed anymore.  I am not sure my body can take any traumas.

But, the very next day, I got a call for an appointment to insert something called "fiducials" into my liver which helps them track the tumor through breathing movements.  (By the way, these fiducials are appropriately named - they are pure gold.  I will have a very valuable liver.)  That appointment is June 7th.

Clearly, I had misunderstood the intent of the consultation and what was to happen.  In the doctor's mind, it was a third date,  and in mine it was a handshake in the street with the promise of coffee later.

In the mail today, I got blood work requests and surgery day instructions.

Too fast!

Because I thought that nothing would happen until my case was discussed at the tumor board meeting, I didn't ask many questions, and yet things are moving on very rapidly, and I still have not entirely decided whether I want to do this or not.  As it turns out, I do have many, many questions about this.

Even googling and reading real literature and journal articles doesn't help me, as just about everything I find has to do with HCC or colon metastases.  Not only do I have breast cancer, but I have had a liver resection already so that plays into this decision.  Have they ever done this on somebody with half a liver?  The cancer is near the portal vein too, which is why he said this could be dangerous.   One cough and I could be left with no liver function.

It really could go very badly.

Let's keep up hope though, and say it is successful and does kill the tumor.  I could likely be off chemo for a while, which would be amazing.  Maybe I could even have a period of normal living again.  Maybe I could travel, visit friends and family and knock some things off my to-list.  Maybe I could just do normal things like cook and eat.  That would be incredible.

As we all know though, even with success, cancer will come back, and I'll need to be back on chemo at some point.  Will a radiated liver be able to handle the chemo that is to come?  Can they really be precise enough to target only tumor and leave the liver alone?

What about the resection - how does that play into it?

So I guess another date is in order because I don't feel I have enough information to make a good decision.

Back in the early days of metastases, cutting out half my liver wasn't something I even questioned.  I feel very differently now.  That surgery did me no good and I now know that things can and do go wrong in these cases, even in the hands of experienced professionals.

Do I want to risk what little life I have left?

In the past, I've had trouble deciding which pair of shoes to put on in the morning, or what kind of sandwich to get at Subway.....and now this is the kind of choice I must make.

How on earth do you make a decision like this?

Mother's Day - My Parent Has Cancer and it Really Sucks.

I was given a book to review, called "My Parent Has Cancer And It Really Sucks."  I skipped through the book and found it quite good, clearly written for young teens in their voice, and one I recommend you give to your older child if you are diagnosed.  They will learn that their feelings about having a parent with cancer (both fear and annoyance) is all quite normal.  While I skimmed it all the way through, I did not read it in depth.

Why?

I asked my son if he would do a co-review with me.  I thought that would be really fun for my readers to understand his perspective, and perhaps, since his mother was terminal and the author's was not, he could expand on  it some.  He said yes.  "Yay!" I thought.   "A Mother/Son Project!"

Little did I know that it would not be so much fun for him.   My son, as I have bragged endlessly, is an IB student with a 4.6 GPA.  He is clearly college-bound, a math/science nerd, a junior and very active in school, both academically and socially.

Here's the difference between mother and son.  I thought of this as a great project for us to do together and he thought of it as ..... a book report.  More homework.

I'm sure he also thought of it as time spent thinking about his mother's cancer, and unlike most in the book,  he knows that his mother will not survive.  Why spent time thinking about that?   I wouldn't at 15 either.    The experiences of kids whose moms don't do chemo for 3 years, who don't have numerous surgeries and numerous times when they are sick might be feel different to him, might make him feel unlucky.

Maybe.  Maybe not.   Mostly, I think, it just was another thing he didn't have time to do.

To be truthful, he has handled this situation beautifully and he didn't really need any advice.

So, it never got done.  He finally admitted he didn't want or have time to read it, so I let it go.  But, I had gotten a free book, had promised to review it, and from what I'd read, it seemed  a good book, a useful book for teens, especially ones on the younger side.  So, when I was asked to post the below letter by the teenage author of the book, I was happy to do so instead of a writing a detailed review, which should probably be done by a teen anyway.

Before we get to Maya's note, I just want to wish all my readers who are Moms dealing with cancer while trying to raise your kids a Happy Mother's Day.  Trust me, I know it is not a simple task.  Maybe it's the hardest thing you've ever done.  The fact that you are being celebrated - you deserve it most of all.

Mother's Day by Maya Silver.

Mother's Day is meant to be All About Mom. We are all (for the most part!) grateful for our mothers. They gave birth to us. They raised us. They were there for us when we needed them the most.

For me, there is one extra layer to Mother's Day -- to any day really. It's the knowledge that I can never, should never, will never take my mom for granted. When your mom has battled cancer, the distant possibility that she might not always be there suddenly becomes tangible.

When I was 15, my mom was diagnosed with breast cancer. I never wanted to talk about it. Like many teens facing a parent's cancer, I was fearful. I was ashamed. I felt guilty. Last year, my father and I collaborated on a guide for teens whose parents have cancer called, "My Parent Has Cancer And It Really Sucks." (Sourcebooks, March 2013).

During the writing process, I reflected deeply on the cancer experience in my family. For the first time since my mom was diagnosed, I processed and analyzed all of my teenaged emotions, reactions and behaviors during this difficult time.

And so, here's a letter to mom. An apology. A clarification. A thank you:

Dear Mom,

I wasn't always there for you. I didn't always ask you how you were doing. I avoided you. I was embarrassed that you were sick, bald, exhausted. I chose sleepovers with friends over family nights. Did I buy you flowers? Did I give you a hug every night before you went to bed? Was I ever mean? Did I yell?

I can't remember the details. The year of cancer in our family was a blur. And I wish I were a better daughter at the time. 

After talking to so many other teens going through this experience and spending a year reflecting upon, thinking about, processing cancer, I can now give you a window into my teenaged mind. I wanted to be independent. I didn't want to pitied. I believed so strongly that you would survive that I avoided fear and rejected grief about the experience. I felt guilty when I wasn't there for you.

I want to apologize for the way I may have acted, for the things I didn't do and the words I never spoke. I want to let you know that I was scared, I did care and I did want to be there for you.

And I want to thank you for being an incredible model for me and for anyone battling cancer. You dealt with it realistically and gracefully -- all while still being an awesome mom. Thank you for not holding me to higher expectations (even if you should have!). Thank you for understanding that I still needed to be a teen. Thank you for forgiving me if I wasn't always the best daughter. And thank you for the one silver lining of our cancer experience - the opportunity for Dad and I to give back and fill a gap in resources. Now, teens will have a guide to turn to and hopefully be better sons and daughters to a parent with cancer than I was!

Happy Mothers Day.
Love,
Maya

Sugarwish Contest Winner!

Congratulations!

Dear Sacramento Road Rager

Dear Sir,

I was on my way to chemo today, enjoying the warm weather.  I was behind your red SUV-type car.  I couldn't see the name of it, but it was awfully cute.  I mused on my own car - 13 years old and falling apart but who would buy a new car now in my condition?  I would love a new car like you had but wasn't sure what brand it was. A ranger or something maybe?  I wasn't close enough to see, I guess.

Equally cute was your bulldog, whose head was out the fully open back window, sniffing the air.  When a bulldog sniffs, it looks charming, by the way.  The black and white dog was clearly smelling things way beyond my capability, and I was enjoying imagining the scent molecules wafting in the breeze, catching his squished nostrils, and seeing his whole face scrunching as he found his delicacies.

I was not able to see you, the driver.  However, when we went past a high school and you slammed on your brakes, I looked over and saw a teenage girl walking and your hand waving.  I assumed you either knew her or wanted to, and perhaps were either a young male or somebody's mother.  So I decided it was in my best interests to go around you.  Lots of young girls were walking as school had just gotten out, and you may come upon more friends.  Besides, the way you slammed on your brakes so suddenly, I feared that your little dog would tumble out the window and end up under my wheels.

I won't be responsible for bulldog deaths.

I passed you to the right and then moved over again as I would be making a left turn soon.  I made sure I didn't cut you off, and in fact, there were few on the road so I gave you a lot of room.  I had at least a mile until my left turn, so no rush.

Since I could no longer focus on your animal, I started listening to the podcast that I had on.  Armstrong and Getty, who never fail to make me laugh.  I was quite enjoying my ride to chemo on this beautiful spring day, with flowers blooming and sun sparkling.

I came to a light, which was the second to the last light before I was at the hospital.  I was interested in the radio conversation about the poor abducted girls in Ohio, when suddenly, there you were, pounding on my window, screaming obscenities at me about my poor driving.

Frankly, I was terrified.  I have no idea what you were angry about, nor why you swearing so violently at me while slamming your fists on my car.  My driving, in my mind, was not poor: when you slammed on your brakes I didn't hit you, and I did avoid you after that, which I was taught was called defensive driving.

Was it the dog?  Was I not supposed to look at your dog?

Unfortunately, I was too shocked at your pounding on my windows and screaming obscenities at me to grab my phone and take pictures; although I did notice you were an attractive young man at about 26 with dark hair and and a mustache, well-groomed, who didn't look like the type who would go insane for no reason.  Guess you can't tell by appearance.   I did manage to say I was on my way to chemo and to leave me alone, fearing you were about to open my unlocked car and pull me out of it, and in my mind, perhaps your knowing I was going to chemo would help you realize there was not going to be a fight. (Although I knew it would garner no sympathy.)  Silly me, the 25 year age difference didn't register as also being a reason for no fight.

Fortunately, the light changed and being in front, I sped off, leaving you behind.  I watched as you got back in your car, switched lanes and made a right turn, and breathed a sigh of relief that I would be able to go to the hospital and find a parking space without fear of reprisal.

Reprisal?  For what though?  Looking at your dog?  Going around you when you slammed your breaks to check out a girl?   Clearly, my offense is something only you know, something you imagined in your rage-filled world.  And, your poor dog who fell back when the brakes were hit; a dog you left with a window wide open to come berate me,  a dog you probably would tell people you loved but didn't think about at that time, probably didn't understand either.

Anyway, congratulations.  You are a big, important man, threatening a 99 pound middle-aged terminally ill women on her way to chemotherapy for an imagined driving offense.  Way to go.  Way to live a life too, one that might allow you 50 more years; with hate, anger and the desire to abuse.  I venture to say that I will be happier with my one year than you are with your 50.

So, thank you.  You really taught me a lesson.   I will drive much better now.  I won't look at people's pets no matter how cute they are and how far they are sticking out the back window.  And, rather than go around a car that brakes suddenly, I'll just hit them.  After all, I have nothing to lose.

I imagine you are quite proud of yourself right now as you crack your first (?) beer of the day, and are justifying your actions against this old woman who shouldn't be on the street.  I would love to be in that brain and see how it happens, just like I'd love to be in a dog's brain as they sniff stuff we can't see.

I imagine the intelligence level is about the same.

~~~

Medically I was unable to get chemo, as my white count was only .7.   Not unsurprising.  Tomorrow, I have an appointment with an internvential radiologist to see if there is something we can do about this stubborn tumor locally.  SBRT may be what they are looking at.   I also have another MUGA and a Chest X-Ray.  So,  I will be driving out there again tomorrow and several times next week.  I will definitely watch for bulldogs, this time camera at the ready.  I know you'd have loved to have seen this nutcase.

A Million Thanks

I just noticed that I have just hit a little over a million page views.

While I realize in Internet World a million views is not that much, certainly not considered viral, it's a bit different when it's a blog as opposed to a video.  When it is a blog, especially one about an unpleasant subject such as cancer; when it is nearly all writing instead of dancing Korean men or women in bikinis, you realize a million page views is an accomplishment.

I have to stay away from viruses anyway.

Incredibly, many of the people who find me weren't searching for "breasts, boobs, big ones," (although there are a few of those).  Most of them were looking for true stories of living with breast cancer and I have found that many find me and start from the beginning, like a book.  So in the pie chart of page views, my repeat readers are a big slice.

I feel like I should be giving an academy award speech or something.   "I'd like to thank my computer for never crapping out on me while I'm in the middle of a thought, I'd like to thank my desk with the view of the yard that gives me something to look at while thinking...."

But the real thanks should go to my readers.  All of you:  the ones who sit with a cup of coffee and read every new post quietly but with dedication, as well as those of you who comment on the things I say; both types of readers are valuable to me and have made me what I am now: an unemployed blogger with terminal cancer.  So thank you.

Truly, so many of you provide support and encouragement that I honestly don't know how I would have managed this disease the way I have without you.  I'm very grateful.

I didn't want to let this number pass by without an acknowledgment.  Let's hope I make it to  2 million  yeah?