Sunday, June 26, 2011

Putting my Affairs in Order

Here's how I'd like to put my affairs - in order:

Ah, even a cancerous girl can dream.

They should make an adult version of the Make-a-Wish Foundation, don't you think?  I'll bet Disney wouldn't even make the top ten.

So, I've been thinking about all I need to do.   I am going to want to finally scrapbook all those baby photos of my 24 year old son that have been sitting under my bed for 17 years.  Over the years, I bought $10,000 worth of good-intention scrapbooking supplies; I should probably start using them.

I purchased The Story of a Lifetime and have begun filling it out for my children.   This is a book of questions that you respond to so your family can posthumously get to know you.  

It's full of queries such as, "Have you ever saved someone's life?  Tell the story."  And, I totally haven't, but my kids don't know that so I'm going to have a lot of fun making up stories about my heroism.  They'll get a better mom dead than I ever was alive - I'll be Saint Ann by the time I'm done.

I'll start making end-of-life medical arrangements, so my family knows my wishes, although I'm not even sure I know them.    And, you all know damn well that I'll write my own obituary.   Eventually I will probably start cleaning out a bunch of stuff that means something to me but will be junk to others, like that skirt I wore when I was 18 that is hanging in the back of the closet and that I could still fit into until the bloating started a few months ago.

I realize I have years left to live - maybe even a decade,  perhaps even two.  Hell, maybe even a normal lifespan -  I'm not giving up hope at all.  But, there are no guarantees with this disease - I've seen it take people swiftly.  If When I live for decades,  than no harm done, these are things most people should do anyway.

I just work much better under a deadline.

Getting your affairs in order, in the traditional sense, means financially.  This is where being poor for a lifetime pays off - there isn't that much for me to do.

I do have insurance.  I work for a school district, and as most big companies do, they offer life insurance as a benefit with employment.  When I first started, I took the minimum because, you know, I was never going to die;  life insurance is for other people.    A year or so ago, they changed carriers and offered everybody the chance to up their insurance, no questions asked.  Although at the time I thought I'd survive breast cancer, I still jumped and bought the max.  

That turned out to be a pretty good decision.  Now my family will get $125,000 upon my death.

(I didn't like the way my husband's eyes lit up when I told him that.)

I called my benefits department to find out how to manage it and they sent me a slew of paperwork to keep for when I needed it.  I received it Friday, glanced at it and put it on the coffee table.   Then my family and I went out for an enjoyable and hilarious evening of Defending the Caveman.

When we walked in the house, look what I found.

Simple Dog struck again.  She ate my insurance paperwork.

She loves me.

I can't wait to call the district and explain why I need the paperwork again.  I bet it's first time they truthfully heard "My dog ate my homework."

I'm taking that as a sign I won't need it for a long, long time.

Friday, June 24, 2011

Navy Beans Heading to Port, sailing with Zometa and Vitamin H

What? What kind of title is that? Has she gone crazy?

Wow, and she was handling it so well.

No silly, that is my new treatment protocol.

Hey, cancer patients need something to get cute about - why not give our chemo little nicknames? Navelbine is sometimes called Navy Bean, and Herceptin is known as Vitamin H. Now we just need a name for poor little Zometa, always left out.

Navelbine is the actual chemotherapy. Zometa is a bone strengthener used for osteoporosis, which also helps prevent cancer from moving into your bones. Herceptin is because I'm HER2 and that's been explained before.

I'll get the Navy Beans weekly, the Herceptin every three weeks, and the Zometa monthly. Got all that?

I'm back to weekly doctor's appointments. That, my friends, does not make me happy.

Navelbine has another nickname: NavelBIND. So, my diet has consisted of all high-fiber foods and gallons of water. TMI alert: so far, so good. It pays to be disciplined about these things.

The treatment itself went as they all do. I was welcomed back to the infusion center with open arms and a few concerned faces. I hadn't been outta that chemo room very long and those nurses know what that means. They hadn't even had time to forget my name.

As before, I was - by far - the youngest person in that room. Don't people under 80 get cancer anymore?

I'd already been stuck in the arm for my MUGA that morning, so I asked for the one chemo nurse who has always had easy access to my veins. And, this time, because it had already been stuck once that day, he couldn't get it. He had to get one down on my hand, and that took a few tries. Unfortunately, Navy Beans is not as sweet as it sounds - it's a vesicant which means it can scar and burn veins and destroy tissue if it leaks out.

You know, like acid.

That means I need a port.

I have very much wanted to avoid having a port. For those not in the know, a port is a device implanted into your chest (for you ER fans, otherwise known as a Central Line) that allows chemo to enter your bloodstream directly and bypass all those small veins in your arms. A port is unsightly, and looks something like a nose growing out of your chest. I'e heard it can be uncomfortable for the very thin, and also gets in the way of bra straps and seatbelts and the like. Being that I have a phobia about anything touching my neck, I tend to wear lower cut clothes, so a port would be hard to hide.

Frankly, my chest has been assaulted enough, and I wanted to spare it that indignity.

The truth is I only have two useable veins in my arm left. And, three days post chemo, I can feel a burning along the veins that were used for the injection. It still hurts in the crook of my elbow where they injected me for the MUGA. So, I am going to have to give in and get a port. I can tell my veins won't hold up.

I was fussing about that idea to my nurse when getting stuck - getting the port feels like giving up and being a cancer patient to me. The elderly lady next to me overheard and extolled the virtues of hers, and said I could get it removed as soon as I was done.

I looked at my chemo nurse and smiled, "When I'm done? When will that be, do you think, Joe - when I'm cured?"

He smiled, sadly.

"Yes, when you are cured, Ann."

We both know that won't happen.

Monday, June 20, 2011

The Best Possible Bad News

My oncologist cut to the chase, "It looks like there are only two lesions in your liver and no cancer anywhere else." Then he smiled a little.

I did a fist pump. "Yessssssss!"

That, ladies and gentlemen, is the crazy world of cancer. All grins and celebratory gestures because cancer has spread to only one organ.

But, you ask: what about my flank pain and the bloating?

It's still undiagnosed because it's not related to the liver. All we know is that it's not cancer.

Good enough for me.

My doctor said it was very fortuitous that I had those symptoms, because without them we never would have found these lesions until it was "too late."

And that too, my friends, is also the crazy world of cancer. I feel extremely lucky that I have an unknown chronic pain condition, because that, quite possibly, bought me years of life.

I have to give mad props to my oncologist for not blowing me off when I mentioned the pain and bloating, and for ordering the second abdominal CT even though I'd had the same test just a few months before. It would have been very easy for him to point to that previous test and say we should wait. I would have agreed.

But, he didn't. He trusted me or followed his intuition or just likes to spend insurance company money; I don't know.

What I do know?

The lab results are still not in, so he doesn't want to put me back on herceptin yet. So, this Wednesday, I start on a chemo called Navelbine. He said it was a pretty mild chemo and the main side effect would be low white counts. He also said that I wouldn't lose my hair.

Did you hear that?


The ladies on BCO warn me that this drug is also nick-named "NavelBind" so I'll stock up on Senekot and high fiber foods and order a case of water from AquaDelight. (You should too.)

Once my labs come in, I'll go back on herceptin, hopefully next week. I have a MUGA Wednesday in anticipation.

I'll do this chemo weekly and in two months, we'll repeat my scans and see if the tumors have shrunk. If they have, then I'll go see an interventional radiologist and have radiofrequency ablation to "zap" what's left.

After that, I'm not sure what will happen. I imagine I'll be on herceptin forever, assuming it works.

I did ask about the TDM1 trial that is going on. He said if the Navelbine doesn't work than he might recommend it but not yet. I'm good with that answer.

For the next two months, I'll be thinking "shrinkage" thoughts.

Sorry honey.

Look out Kathy Rich. I'm coming for you!


Friday, June 17, 2011

PET Scan

Can you guess that this picture is not of me?  I may have an abnormal growth, but not that one.

I was lucky enough to get an opening for a PET scan immediately. PET, for you cancer newbies, has nothing to do with your dogs or cats or hamsters. Or snakes, if you swing that way, which you shouldn't if you have hamsters. It stands for Positron Emission Tomography. It is nuclear-based and gives an inside peek into how the tissues in your body actually function. It can, very simplistically, see cancer growing.

I knew that much about it, but didn't really know how the test was conducted. Lots of women with cancer or suspected cancer have had this test, but I paid no attention to their descriptions at all, confident that I would never have need of one.

When the appointment was made, I was told to prepare by eating a high protein diet for the rest of the day, and to fast the day of the test. I was allowed to drink water, thank goodness. I was also told to bring warm clothing with no metal on it, and that I would be there for three hours.

I was also told not to exercise. That was quite a struggle, as you can imagine.

The night before, after my dinner of grilled chicken and salad, I packed for my three hour test. I found a nonmetallic pair of sweats, grabbed my iPad, iPhone, a book and a magazine and put it all into a bag. I needed to be prepared for all eventualities.

Being a PET virgin, a spayed PET, if you will, I arrived at my appointment a little early. I was sent to the nuclear imaging side of the building. The tech asked me to put my stuff in a locker and said I could change later. She would be injecting me with radioactive tracer and then I would lie down in an exam room for an hour while it absorbed. I put everything in the locker but my iPhone and a book.

As I walked towards her with these items, she gestured back to the locker, and said I would have to go into the room without any items; that I couldn't take anything in with me.

My ADD self was stunned. Was she really telling me that I had to lie on a table in an exam room for a whole hour - with nothing to do?

"I can't even read? Why?"

"I'll explain why in a minute but would you please go empty your bladder?"

I went to the bathroom, shocked. You all know I love my sleep, and you might be thinking right now, "well, isn't that just a good time to take one of those naps you go on about all the time?"

And, you might be right if I was a normal person. But, my regular readers will know that I have ADD, and being put all alone in a room, not being allowed to move for one entire hour, with no distractions, is not going to put me to sleep. Sleeping happens organically, when I'm in one of those soothing machines, or on my couch with my dog releasing gasses nearby. Being told to lie on my back on a table and "don't move!" is going to make me feel itches and aches and pains and pretty soon I'll be tossing and turning and checking the time, and accidentally rubbing my back and scratching my head and doing countdowns with finger tapping and scratching itches again. I'm going to start wondering what's in the cabinets and drawers and want to draw little faces on tongue depressors to make puppets with cotton ball hair.

It wouldn't be pretty.

After I came out of the bathroom, the tech went on to explain, "you see, after I inject you with this tracer, your body will absorb it. If your muscles are moving, even to turn the pages of a book, that will cause more absorption to happen in that area, and the reading won't be accurate. So you need to lie as still as you possibly can."

Okay, that makes sense. But, they can't really expect me to lie on my back in a quiet little room with nothing to distract myself.

Can they?

They do.

Suddenly, a brilliant idea popped into my head. "Can I put my phone across the room and use it as a radio?"

She looked puzzled. "Your phone can do that?"

I said yes, and I quickly grabbed it and loaded "I Heart Radio." She warned me that the room was lead-lined and it might not work but soon, I heard the dulcet, vocabulary rich tones of Dennis Miller, and I relaxed.

She agreed that was it okay to listen to the radio, and so began the process of injecting me. As she did, a metallic taste hit my tongue and I also smelled it. She told me very few people have that experience.

Hey, CIA. I happen to be one of the very few who can taste radiation. Perhaps I can be an early warning system if the terrorists attack. Let me know if you need me.

The radioactive stuff she injected into me came in a lead box. Just sayin'.

When she was done, she very kindly put a pillow under my knees since I'd mentioned my back hurt. I rested and listened to Dennis Miller and some comedian who was chatting about his former addictions. I actually did doze on and off because the conversation was pretty boring. But I was mighty uncomfortable and also hungry, and it was hard to get good rest. Lying in that position for an hour, with my back aching, my shoulder throbbing and my liver sending stabbing pains through me - it wasn't fun.

But the room was nice and warm. And, every time I thought I needed to move, I concentrated on the radio and relaxed. So, it worked.

A million years An hour passed and she finally came for the test. I was to get dressed in my warm, metal-less clothes because the equipment room was cold. She then had me lie on my back in a double-donut machine.

This was a new machine to me, and it's like two CT machines having sex, and you are the penis. Except, I was told I had to lie quietly for another 30 minutes, without moving, very unpenis-like.

I frowned at that, petulant. Nobody said I would have to like completely still for 90 minutes. But, at least it was in a machine so I had a chance of dozing.

I did doze a bit to the soothing back and forth motion of the penis machine, but mostly I just tried not to think about my backache.

Finally, it was over and the tech released me to freedom.

Freedom to eat.

I see my oncologist on Monday and hopefully will get a treatment plan and good news that it is only confined to the liver.

You gotta wonder how much these tests cost. I think I am becoming a very expensive, high maintenance woman. You would think my insurance company would hate me by now, except they keep sending me reminders to get my mammogram, so they must still love me.



Wednesday, June 15, 2011

I owe you an apology

I started this blog a couple of years ago for a few reasons. The first has to do with sleep, a recurring theme 'round these parts. I have always loved to nap, and for some reason, it seems like the phone rings as soon as I lie down. That makes me swear and get very grouchy, and say stuff like "Who the f*ck is calling me NOW?" but then I have to be fakey nice on the phone so nobody knows I'm annoyed. "Oh hiiiiiiii, nice to hear from you."

When I first heard those fateful words, "You have breast cancer," the thing I thought was not, "I'm going to die" but instead, "Oh no, I'm going to be extra-tired from chemo and people are going to call me and wake me up!"

It was that thought that started me toying with the idea of writing a blog - I wanted to train people not to disturb me.

Naturally, after my initial diagnosis, I was very eager to get a first-hand accounting of what it's like to go through breast cancer treatment. Not knowing anybody in real life who had been through it, I googled "breast cancer blogs" and found this one. I landed somewhere in the middle and read a few lines, and found her funny and witty, and I related to her in a big way. I knew she would handle her treatment the way I would, so she would be a good model for me. So, I went to the beginning of her blog and read it from start to finish, the way I see many people reading mine.

I was horrified to discover that she died at the end.

I couldn't believe it. And, I was worried for other women, newly diagnosed with an early stage cancer, who might come across it and think that would be their fate.

(That blog has changed since I first read it - somebody has been adding photos and ads and rearranged the order, so I don't know if it's still the same content.)

Anyway, I now had two compelling reasons to start a blog. I wanted to prevent being awakened from naps, and I wanted to share the story of a woman with breast cancer who lived through it and went on to have a normal life doing normal things, like nagging her husband and avoiding housework.

I was going to write this blog cliche-free. No "journeys with cancer," no "long and courageous battles" no "new normal." Just plain speaking and some silly jokes.

That was my plan.

Unfortunately, today I was diagnosed with metastatic cancer to the liver. And, that means that this blog will end as all the other blogs of metastatic women eventually do. I'll share my struggle, my new treatments, my ups and downs. I hope I will do that for many years to come. But, eventually I'll write less and less, sleep more and more, and one day, my husband will post for me, saying I'm gone.*

How cliche is that?

I'm sorry, dear readers, that I let you down.


On to the life of a Metster. Tomorrow I have a PET scan to see if it's anywhere else in my body. Monday, I see my doctor for a treatment plan based on the results. Think good thoughts that it is contained in the liver and this back pain I've been experiencing is unrelated to any disease process. That would be the best case scenario at this point.

*Only he might not, because I won't be around to nag him.


Tuesday, June 14, 2011

New Sponsor - Aqua Delight!

Check out the top of my page! I have a new sponsor - Aqua Delight!

Here's the story: One day I was googling for chemical-free water bottles since I'm a water addict. I came across Aqua Delight. I was actually looking for empty bottles to put my own water in, but this product intrigued me. Not only are the bottles are chemical-free, but they contain pure, fresh, clean water. While the main benefit is that it helps soothe that metallic taste you get with chemo, I thought it might be a good product for me anyway.

Little did I know at that time that I might end up back on the chemo-train.

I contacted Allen, the owner, to find out if they would run a contest on my blog since I wanted my readers to get to try it. He not only said yes, but upon hearing my new situation, he offered me a case of water in case I have to do chemo again, which was very kind of him. We have been emailing back and forth, and he decided to sponsor my blog in exchange for the above ad.

Isn't that nice?

You can help me by buying Aqua Delight for your friends who are doing chemo, your friends recovering from chemo, or just for anybody who likes pure, healthy water.

The water is priced the same as any old generic water you get in the store, but it tastes much better. Plus, they have free shipping and a money back guarantee - so you have absolutely nothing to lose by trying it.

So, order your water today and sit back and set a spell. I'll check back with you after my doctor's appointment at 9:45 CA time tomorrow. I will be going to work but I will post as soon as I can.

Wouldn't it be wonderful if all I needed was antibiotics, and a little water to wash them down?


Saturday, June 11, 2011

Liver Biopsy

It was a lovely spring day after a cold, wet, and very long winter. On this day, June 9, 2011, I was scheduled for a liver biopsy. This did not make me nervous as I:

a) have never had an uncomfortable medical test and,
b) asked others who'd had the test, and all responses were "it's nothing to worry about."

I knew the hardest part would be not being able to eat or drink for 8 hours before my 1:00 procedure. I have been very thirsty for a long time and can rarely go ten minutes without drinking water (a tamoxifen side effect). I'd originally planned to work a half day, but knowing donuts and water bottles would be there to tempt me, I decided to take the day off instead.

I slept until about 9:30, and woke up thirsty and longing for coffee. I determined that a nice, long bath would be an acceptable substitute, being both hot and wet. I decided not to let my dog in with me lest his bathwater lapping technique tempt me to do the same.

The biopsy was scheduled at the same location where my previous biopsies had been. It's in a lovely building downtown (with parking) and my husband, who was my designated driver, and I, scored prime spots far away from the TV.

They have a little patio outside the waiting area with some tropical plants and a large fountain, and the longer I sat and waited, the more inviting that patio looked. I finally told my husband, "I'm going to sit outside in the sun, let me know if they call me." I went out, laid flat on my back on the bench and soaked up the long-awaited sun. You all know me by now, so you can guess what I did - I took a little doze as I listened to the tinkle of the fountain.

It was a light sleep, and the rippling water of the fountain captured my hazy, dreamy attention. The more I listened, sun on my face, the louder it got, until it roared like Niagara Falls. This was not acceptable to a person as parched as I was, so before I stuck my head in the splashing, shimmering pool I went back inside.

My name was called and my husband and I were taken to what looked like the pre-op area of a hospital. They had those snazzy curtains on wheels with a design nobody would choose in their own house; the pattern that just screams, "You are about to have a medical test created in 1982!"

The very sweet and pregnant nurse came by and did my intake. She asked me my name, my date of birth, the name of the street I grew up on, the name of my first pet, and asked me to say the letters in this word:

After she determined I hadn't snuck in off the street for a free liver biopsy, I was given a gown and told to undress from the waist up. I could keep my shoes and jeans on.

After I was properly attired, she came back in and started an IV, and told me that the doctor would be there shortly. I would be given drugs right before the test that would consciously sedate me. I needed to be conscious to comply with instructions. I asked her what the drugs were, and she told me that I would be getting Versed and Fentanyl.

I don't know about you, but the idea of being sedated and unaware but awake freaks me out. What if the doctor is cute and I make a pass at him? What if I spill my family secrets, like the time my son and I broke the pickle jar at the grocery store and walked away like it wasn't us? What if I turn into a Weiner and start sexting teenagers?

Who is awake and unaware, I ask you? Zombies, that's who. What if I rip somebody's throat out?

Who knows what those drugs make you do that you won't remember, but can still be prosecuted for.

And, just my luck, a very cute and young doctor did walk in. It's getting quite disturbing how many doctors I am encountering that could be my children little brothers. I know I'm not getting older so they must be skipping some lessons in medical school these days, is all I'm saying.

I was supposed to have a CT-guided biopsy, but the doctor explained that they would try to find the spot with the sonogram first. Sometimes, he said, these lesions just "jump out" at him and the CT scan isn't necessary. I explained about my shoulder and he said he would work with me to find a comfortable position, and he had me lie on my left side, a pillow propping me up, and my right arm straight down by the pillow.

They greased me up and he started the sonogram. I twisted my head to the right so I could see what was on the screen - if there were going to be jumping lesions I didn't want to miss them. He did, indeed, see what he was looking for so we didn't have to move into the CT area. All I saw on the screen was a white streak, so clearly, I need to brush up on my sonogram reading skills.

Lesion found, it was time for the actual biopsy. I was calm and relaxed as they prepped and draped me. I was in the position they wanted, they found the ribs they wanted to get between and the go was given to drug me.

I don't react to drugs like other human beings - I don't know why. They asked me if I could feel the medicine and I said no. So, they gave me some more. Then, they decided that was enough so it was time to do the biopsy.

He said it would sting a little as they put in the numbing medicine but the deep liver has no nerve endings so all I would feel is pressure. That jibed with what I'd read online so I was good.

Suddenly, I felt a stabbing, searing pain, starting from the skin but plunging deep inside, into my stomach, my liver, my entire mid-section. I was shocked, it hurt so badly. I didn't move but I did tell them it OMG IT HURT! and they gave me some more medicine. They went for another go around and the same thing happened - deep, piercing pain, exactly like being attacked by a serial killer. (Which I know about because I have read approximately 500 books about serial killers.) I became nauseous, it felt like my insides were tearing and my intestines were jumping back to get out of the way of the weapon. Was the doctor using a butcher knife instead of a needle? They gave me more sedating medicine and IV Zofran for the nausea, and went at it one more time. And, it hurt as much the third time. Fortunately, the third time was the last. I was left quivering and sick, knowing exactly what it felt like to be stabbed.

Suddenly, big welts appeared on my arm. I remembered that when I came out of surgery after my mastectomy they had found welts on me too. Both times, I was given IV Benedryl to counteract the reaction. The doctor told me that it appears that I am allergic to Zofran and not to have it anymore.

The bendryl took care of the welts, and the pain from the stabbing biopsy subsided, I guess because the drugs finally began to work, and I went to sleep. I had to stay there for 2 hours, and they wanted me to sleep on my right side, which I can't do because of my shoulder. So, she said sleep on my back, which I can't do because I don't like to. I decided to sleep on my left side and screw them.

I woke up several times, grouchy as hell. The drugs didn't make me forget, and they didn't turn me into a zombie.

They turned me into a bitch.

At one point, I woke up hungry and they brought me peanuts. My husband ripped the bag open too hard and they spilled everywhere, and I got mad and yelled at him. Those peanuts were all that was standing between me and starvation and I let him know that. Then I went back to sleep. I woke up again and wanted to go home, but they said I had 35 more minutes. I went back to sleep and I heard them talking about how I could go now but was asleep and not to wake me. That got my attention and I woke up fully and said, "Nope, I want to go."

As she removed my IV, the nurse asked me if I remembered the procedure, and I said yes. She said "even the pain?" Um, especially the pain - why would that be the forgettable part?

She then said some fateful and disturbing words. She said that she didn't want to give me false hope but cancerous tumors are usually "yucky" and don't have feeling, but when they biopsy liver abscesses, it usually does hurt.

That actually made me angry. It was hard enough to come to terms with what is probably very bad news, but now I have to rethink it all, research it again. Most people, I know, would be happy to hear an alternative theory, but not me, not at this point. I was prepared and now I'm slightly uncertain.

So, now, I wonder: can a person have two abscesses on opposite parts of their liver? Can they grow in five months? Why would a person who hasn't travelled get an abscess anyway? What are the symptoms of an abscess - bloating, pain, exhaustion? Does an abscess masquarade as cancer? Are people with cancer more prone to them?

I wonder about the nurse: Did the doctor tell her something? Was she going on experience? To be honest, I haven't found that nurses have very much medical knowledge. They know how to do things but they don't understand the biology about why they are doing things, or the processes that lead to them doing things, at least in my experience. They know what they know within very narrow confines.

She said that biopsies are painful in people with abscesses but not in people with cancer - but how often does she even know the results of the tests? How big is her sampling? Does she follow up with everybody? Is this a hobby of hers?

Because of that remark, I've done deeper googling and have found that many people, indeed, had painful liver biopsies that did show cancer. I can't find one instance of a more painful biopsy because of an abscess. But, now I'm sitting here hoping it's an abscess, while knowing it probably is not, but maybe it is. I am now beating hope back with a stick, so it doesn't overwhelm me and then bring me down on Wednesday.

It's a lot easier to hear good news when you are expecting bad news, than it is to hear bad news when you are expecting good.

Anyway, back to biopsy day. The very nice staff let me go home, and I slept for the rest of the day and all night. The next day I felt like I'd been kicked in the ribs by a horse and was more than an hour late to work, but I did go to our high school graduation and help hand out diplomas and take photos for the school webpage. The ceremony was lovely and I got to say good-bye to some wonderful kids. I'm so glad I didn't miss it.

Today, I feel like I've been kicked in the ribs by a goat. Tomorrow, I imagine I'll feel like I've been kicked in the ribs by a dog, and Sunday, by a cat. Monday, perhaps by a mouse, and Tuesday, by a flea.

Wednesday, I see my doctor. We'll see what kind of kick I get then.

I guess my luck with painless medical tests has run out. I can tell you one thing for sure though - I just had my very last liver biopsy.

Wednesday, June 8, 2011

A New Site for Breast Cancer Survivors

I want to let you know about a new site out there for breast cancer survivors, from Latest Medical. Latest Breast Cancer is called by the company, "a one-of-a-kind website for patients and survivors."

The site provides access to the latest news and research on tests, procedures, drugs, and lifestyle options for women with breast cancer. Currently, there is a subscription model ($35.00 a year) that filters data based on your pathology report or current situation so you can see what is applicable to you alone - but they also provide lots of great information for free.

It has articles for those just beginning to treatment as well as for those who have long finished it. When I first saw it, I know I spent an hour clicking through and reading research and abstracts, and I hadn't done that in a long time.

They are also keeping a blog, so you can get medical research in one place. Here is the blog for those interested.

Here is the best part. As an exclusive offer to But Doctor I Hate Pink Readers - The first 20 people who comment - yes 20! - will get a subscription! So, here is yet another contest for you while we are waiting for my biopsy results! Post a comment here to win a chance at an insider peek into Latest Medical, Breast Cancer.


And, if you have not already, please "like" me on facebook. On google followers, I have 169 followers now, which drives me crazy. I need one more! And, see that plus 1 thingy down there? Click it! I don't know what it does, but I think you should click. Thanks!)

Monday, June 6, 2011

The Assertive Cancer Patient - Help Her Live!

If you make the rounds of the breast cancer blogs, you might know about Jeanne Sather and the 13 years she's been living with metastatic cancer. If you don't, she has blogged about her experience in the Assertive Cancer Patient.

Jeanne and I have been in contact, off and on. We share a dislike of Pink October and emailed about that some time ago. And, now that I am likely facing my own metastatic diagnosis, I contacted her again, and Jeanne has been more than kind in helping me understand what may come.

I didn't realize this until recently, but Jeanne, who like me is HER2+, is on the TDM1 trial. For those not in the know, TDM1 is nicknamed "Super Herceptin." It is showing remarkable promise for those women with intractable cancers who have failed on other treatments and who don't have much hope left.

How remarkable? Last time I checked in with Jeanne, she was simplifying her life and was preparing for a friend to move in with her to help her die. She was at that point where she was done with treatment. She had cancer everywhere and was ready to go. She had months left, not years.


She's in remission.

Because of TDM1.

It's a long story and you can read it on her blog. But, she needs help, and I'm asking you to help her.

Jeanne lives in the Pacific Northwest. The TDM1 trail is in California. This woman, who hasn't worked for years due to her illness, (although she makes jewelry to sell) has to come up with the funds to travel to California each month, stay in a hotel and get her treatment. If she doesn't get the drugs, her cancer comes back. Pure and simple.

This travel is not cheap.

How often do you get to help save a woman's life? How often do you directly get to help keep somebody alive? How often are you called on to be a good Samaritan?

Not very often, and not for a reason like this.

Please head on over and donate to Jeanne. Anything you donate will be matched by a friend of hers - this is to encourage the smaller donations. Don't think you don't have enough. If you can give $5.00, $10.00, $20,00 or more - it will all go to help Jeanne. It all adds up.

Talk about good karma points! And, don't forget, Jeanne is doing good for women with HER2+ intractable cancer. She is proving that this medicine works and works well, and her efforts will get this drug to market so all can access it.

Sunday, June 5, 2011

The Winner of the Aqua Delight Contest is......

Drumroll please.....

Beth Gainer! Mary Vaughn

What I did was take the name of every person who entered and put it into's list randomizer:

Then, I hit "randomize" and the winner was selected!

Beth Gainer came in first, but, lovely soul she is, she decided to give it to somebody on chemo. #2 on the list is Mary Vaughn, who starts chemo about now. So, Mary, please email me at butdoctorihatepink {at} gmail {dot} com with your address and I will have it shipped out to you.

And, thank you for your generosity Beth.

For those of you who didn't win but would like to try the water, you can do so risk-free. Aqua Delight offers a money-back guarantee, and they also offer free shipping.  The price, at $1.66 a bottle, is cheaper than other premium waters, and if you decide it helps you with metallic taste, you can order a regular shipping schedule.  I have made personal contact with the owner of this company, and I guarantee you that he will honor the money back promise.  You have absolutely nothing to lose.

And, because I am in this limbo - waiting for tests and new treatments - I'm going to entertain you yet again.  I have yet another contest for you, and this one is to win information.  Check back this week for your opportunity to win!

Saturday, June 4, 2011

Sacramento Event - Dance Party to Raise Funds for Cancer Center

There are some amazing kids in this world, who truly want to help victims of cancer. I'm not talking about the kind of kid who buys a trendy and subversive bracelet that announces their love of boobies. I'm taking about kids who are actively trying to raise money to help researchers prevent and treat cancer.

One such student contacted me to tell me about a dance party she is arranging to raise funds for the UC Davis Cancer Center. This party is designed to appeal to teens, with full lighting, a DJ, giveaways, and a great venue. It runs from 8 to 11 on June 17th, and yes, parents, it will be fully chaperoned.

She wrote,
I wanted to incorporate the 3 themes of American Cancer Society: Celebrate, Remember, and Fight Back! The "celebration" part is the dance, and the "remember" part will be a glow stick song, where everyone can wave them in the air for one song while they remember those that have been touched by cancer. Finally, the "fight back" will have a little ceremony at the end, where I encourage those to empower themselves to do more; whether it is through participating at a Relay for Life, making their own American Cancer Society club, or doing a fundraiser. There will be an American Cancer Society adviser at the event with an information table.

I really wanted to throw a fun party that raised money for an important cause at the same time. Many relatives of mine have passed away or been affected by cancer in some way, so I felt personally, it was my chance to give back and take action.

No dumb bracelet for this remarkable young woman.

If you are a young person, or parent of a young person in the Greater Sacramento area, please consider attending (or allowing your child to attend) this event. It will be chaperoned and it will be safe. It promises to be a fun party that will also help a lot of people. If you can't attend, why not just donate and make this girl's desire to help successful?

If nothing else, please print the flyer and pass it along to anybody who may be interested.

You hear so much about the negative side of teenagers, but in my job I see remarkable young people doing wonderful things - every single day.  You would have no fear for humanity if you could see the caring, intelligent, thoughtful young adults that I am privileged to see.

Sacramentans, please tweet this out and lets get it in the hands of young people who will have a great time.

Wednesday, June 1, 2011

Not floating on de Nile.

My liver biopsy is scheduled for June 9th.  I plan to celebrate with a bottle of nice chianti and some fava beans.

The outpouring of love and well-wishes about my scary new condition has been overwhelming, and I appreciate it more than I can say.

Understandably, a lot of people seem to think that this upcoming biopsy might be happening to determine if it is cancer, rather than to figure out how to treat it.  People keep wishing me benign results.

I'm here to dash your dreams and lead you out of the land of denial.

While hearing a benign diagnosis would be wonderful - so wonderful I would jump up and down in excitement and quite possibly even film it for your entertainment, it really doesn't help me to hope for something that is very likely not to be true.

If it turns out to be benign, then fantastic.  I'm reprieved! Humiliating video forthcoming.

But, I can't get my hopes up for that because then they'll be dashed again - and there isn't a dash much harder than the one where you find out you have a fatal disease.

The truth is, my brain isn't capable of living in the land of denial.  There is no way I can ignore logic, probability and what is in front of my eyes for fantasy.

There are reasons why I don't expect this to be anything but a metastatic event, and I'll share them with you.

1.  I'm symptomatic.  I sleep a lot (as I did when I had active cancer the last time).  I have pain in the lower back and side,  but I have sharp twinges in the upper right now. I'm bloated like a pregnant woman,  and sometimes nauseated - also, I guess,  like a pregnant woman, you poor thing.  I can still eat but feel full all the time, not like I've eaten too much but like there is pressure in my stomach.    My night sweats have increased and I'm just dripping, sopping, disgustingly wet all night.

2. To give me hope,  many people point out that they also had a CT that showed lesions on the liver that turned out benign.  But, these people forget that that was their first CT ever.  Some also forget they never had cancer.  We all have funny stuff going on inside our bodies and things growing where they shouldn't, especially when we get older.

It's when new stuff happens in a cancer patient that it's concerning.

I stopped herceptin December 2nd.  I had an abdominal CT December 10th, which showed nothing on the liver.  I had another abdominal CT May 16, which showed these two large lesions.

That tells us something.

The most common benign liver lesions are cysts and hemangiomas.  Typically, liver cysts don't grow or change appreciably over time and they don't cause symptoms.  Most hemangiomas also don't have a quick growth pattern - although some can.  When they suspect a hemangioma, they usually don't do a biopsy because of the bleeding risk.   Both of these lesion types are also usually diagnosable on CT, especially when they are larger.

You know I can't stay away from Dr. Google, and I found this on a radiology website,

"When multiple new hepatic lesions are encountered on a CT in a patient with a known malignancy, a presumptive diagnosis of liver metastases can be made."

That sounds pretty definitive, doesn't it?

They aren't done yet though.

"multiple new lesions, some of which are larger than 2 cm in diameter are diagnostic of
metastatic disease with a high confidence level.

Still don't believe me?

"In a patient with a malignancy that is known to metastasize to the liver, the interval development of multiple variable size low density hepatic lesions is diagnostic of metastatic disease"

Remember what my path report said?

Interval development of two ill-defined (hypodense) hepatic lesions measuring 2.4 and 2.0 cm concerning for metastatic foci.

Believe me now?

So, why are they doing a biopsy?

"Definitive diagnosis of a liver lesion is required only when treatment will be modified if a diagnosis is made."

My treatment at this point is only tamoxifen, which I guess might not be working as planned, so we definitely have to modify it.  Breast cancers have been known to change histology as they metastasize, and so maybe we need to make sure it's HER2+ still, ER+ etc., to determine the course of treatment.

3. My doctor's words were not encouraging.  No, "It's probably nothing but let's be certain." Or, "It is mostly likely a cyst but we have to check."  He said, "Given your history, we have to assume that it's cancer."   No, he didn't come right out and say it was definitively cancer, which some people are waiting for.  And, maybe that is what I should hang my hopes on, and maybe that is what you would hang your hopes on.  (Lots of hanging hopes around here!)

But, I can't.  I am hanging my hat (hah!  fooled you!)  on his saying that if that was all there was - those two lesions -  I was still "salvageable."  That seems more realistic.  He said, "Lets do a biopsy and then I'll set you up with a PET."  The PET is to see where else it might be.  He also told me that having only two lesions was good, that if my liver would have been covered with them than the prognosis would be much worse.  He also wanted to rush the biopsy through.  (In their world rush is two weeks).

He was talking to me as if I already had metastatic cancer.

I try not to read too much into body language and expressions of doctors and medical personnel.  We women like to do that - we try to read the faces of our scanning technicians, we hang on every twitch of a finger and examine it for meaning, which is probably pretty foolish when you are dealing with an oncologist who has seen it all.  But I got the definite feeling that he thought I had cancer again.

It was just a feeling - meaningless.  But, because of all the things I mentioned above: my symptoms, the odds,  my physician's phrasing,  I am going to have to assume that I have metastatic cancer.  This biopsy, I believe, is not diagnostic.  It is to determine the cancer's histology.

What you do and believe is up to you.

Of course, I am not a doctor and have absolutely no idea about what else could be happening with my liver - I am quite sure there are many of things that I have no clue about. I'm sure Dr. House could come up with dozens of alternative diagnoses, including, of course, sarcoidosis.   Maybe there is some other very fast growing tumor that grows on the livers of HER2+ breast cancer patients.

But, I doubt it.

Of course, none of that means I have given up hope. Facing the probable truth doesn't mean you are giving up.  It just means my hopes are placed appropriately - that it's found early enough to be treatable, that the treatment I get puts me back in remission, that my remission lasts a good long time, and that this TDM1 trial that everybody is talking about really is the miracle cure for HER2+ women, so when it inevitably does return, I'll have that in my arsenal, and maybe even something better down the line.

I know you want to see me jump up and down.  Maybe you will.

But, I'm not buying any sneakers.


Don't forget to enter the contest for Aqua Delight.  You only have until June 4th so don't delay.  Tell your friends too - especially those doing chemo -  healthy, pure water is good for everybody.