Abraxane

I had a visit with my Sacramento oncologist today, and he was able to read my Sacramento scan just fine.

Unfortunately, Sacramento cancer is definitely growing back in the ablated part of my liver.

It is already 2 centimeters, which means the herceptin is not doing much. That means babying my colon is about to end; I have to go back on chemo. Considering that I was up all night last night with mystery nausea and stomach pain, this idea does not excite me. In fact, it makes me very, very nervous. I'm not sure my tender and flighty intestines are ready to be flooded with toxic chemicals.

But, having cancer take over my liver doesn't sound appealing either, so I guess I don't have a choice.

The chemo I will be on is called Abraxane. It is almost the same as Taxol, which I've done before. The difference between Taxol and Abraxane is in how the body metabolizes it, I think - you don't require as many steroids or pre-meds with Abraxane. The plan is to shrink the tumor down for my San Francisco surgeon - I have an appointment in mid-April. Perhaps he can ablate it again, or maybe he has another trick up his sleeve for me.

The good news, and there is some, is that there is no cancer anywhere else. After all this time, that is excellent. If we can take care of this one stubborn area, I can still be in good shape to live a few more years and buy my son some sheets for his college dorm.

So, next Wednesday I will start the Abraxane and go back on the attack. Colon, I'm warning you now - you need to get on board!

Unfortunately, you lose your hair with this chemo, so I will be bald again. Since there is always a positive, that means no bikini wax for the summer. I'm so happy to not have to shave my legs for a while, what a chore that is.

Last time I lost my hair, I bought cheap, adjustable wigs - lots of them in all kinds of fun styles and colors - but couldn't wear them, they were just miserably uncomfortable. Maybe if I splurge and buy a real hair, lace cap wig, it might be more tolerable, and I can keep it on for more than five minutes without my face turning red and demonstrating the urge to rip it off and throw it across the room. I have a special wedding this summer I don't want to be bald at, and as entertaining as wig-ripping might be, I think I'll leave any histrionics to drunk Uncle Frank. It's a special moment for two special people, and it deserves hair.

I'm sure scarves will be my go-to, but I'm really not very cute bald and I've been there/done that with the bald thing. I've answered all possible questions pertaining to my head about a hundred zillion times.

Anonymous, at times, is good. And, that means a decent wig.

For my SacTown readers: Does anybody in Sacramento know where to get a reasonably-priced real hair wig? And, preferably my own hair color, which is now a silver/gray. And, remember, I'm a pin-head, nothing fits me off the rack. Thank you!

Elite PET Scans

For those who are unfamiliar with California, let me tell you that Sacramento, where I live, is not exactly a small town.   I know when you were in 4th grade and learning the State Capitals, it took several passes with the flash cards to remember that  Sacramento is the capital of California, but that's only because LA and San Francisco steal our thunder.  The Sacramento metropolitan area, in fact, has two and a half million people.

And, it's a nice place to live, with a lot to do, or so I hear. I'm a homebody so I wouldn't really know, but I read in the paper that we have fabulous rivers and professional theater and fantastic restaurants manned by James Beard-nominated chefs.  We have what is considered great weather and, of course, I'm here.  Sacramento is most famous for being easy to get away from - it's only a 2 hour drive to San Francisco and the same distance to Lake Tahoe, and even shorter if you are going to Napa and wine country.  Homes are affordable, by California standards anyway, which means you are going to pay a lot for a two bedroom crapshack compared to Idaho - where I hear they run about ten bucks -  but you won't pay in the millions and still have to sweep a dirt floor, like you would in San Francisco.

We also have more than one well-respected cancer and radiology center and we have doctors who have been trained at Harvard and Baylor and other learned institutions; not all of whom were at the bottom of their classes either.

Why do I defend my city of choice?

As promised, Dr. SuperSurgeon called me back as soon as he and his tech support team were able to crack open the mystery of the PET CD.

Unfortunately, his phone call only generated more mysteries, and it put me right back on the cancer see-saw.

I had hoped to hear, "As expected, your PET looks fine, and it was nice getting to know your slippery liver, enjoy your small town life."

But, what I actually heard was, "We need to get you back to San Francisco and redo your scans."

He said that after reviewing my Sacramento-generated scans with the San Francisco radiologist, they were uncertain about what they were seeing, and the "conservative thing to do" would be to rescan in his facility where the machines are clearer.

Once I got past the idea that anybody in San Francisco would ever consider doing anything that could even remotely be considered conservative,  I agreed.

Who doesn't want monthly radiation?

Then I started wondering about why the scans from my own hometown are blurry.  Are Sacramento radiology techs playing some kind of joke on their big brother San Francisco medical counterparts, and hilariously putting their thumbs in the way of the photos?

"Haha, that'll teach those big city slickers!"

Or, maybe it's just an accident.  I know how easy that is to do; half my iPhone pictures are of my thumb.

(The other half are of my dog.)

I got to thinking that maybe it's not the techs' ability - maybe it's the equipment.  Are Sacramento machines really that bad?  Or, could there be some big city snobbery at play?

Really, it's not like we are in a third-world country or they pull the only CT scanning machine available around on a cart pulled by a team of donkeys.  But, maybe they did stop buying CT machines in 1988 when the price of rent started to climb, and they figure slightly blurry is good enough.  After all, we are only 2 hours away from SF, it's our claim to fame.  If blurry pictures don't cut it, we don't have far to go for clear ones.  And, the State can use the money it takes to cross the bridge.

Not being an expert in medical equipment, I suppose it is possible, even likely, that a famous doctor at a world-renowned medical center does have better scanning machines than are available here in Sacramento.  After all, doctors are just grown up boys, and they all like their special toys.  The bigger you are, the better your toys.  So back I go, sometime in April, to get the elite, clear scan that will actually show if cancer is growing back.  Hopefully, this elite scan comes with a mani/pedi.

All this means, of course, that they are not sure what they saw on my blurry Sacramento PET but that something didn't look quite right, and so my three days of thinking I was cancer-free and the surgery was a success are over.  I'm back to the unknown with the shadow of that noose hanging over my head again and I'm back to worrying my son might have to go to college sheetless.

Honestly, cancer jerks you around more than a 6.9 earthquake.  Which, by the way, is one thing we don't have in  Sacramento.  I guess it's a good trade-off.  San Francisco, you can keep your clear PETs and big city ways, we'll keep our earthquake-free city and big-thumbed radiologists.

Have you ever seen a PET?

Okay, maybe not that kind of pet.  But nobody online can resist a cute kitten photo so I expect my hits to jump exponentially.

It had been a nerve-wracking week, so to ease my anxiety I tried to get a glimpse of my future the best way I knew how - a Chinese meal with a fortune cookie dessert.  Take-out Chinese is a two-fer: I get out of cooking, and I get a hint at what the future holds.   After I finished my Szechuan Chicken, I cracked open the cookie.  The fortune inside read, "Stay close to your inner self. You will benefit in many ways."

Why, it's like that cookie was made for me! I am not only close to my inner self, I get to see it on a regular basis. And, it is your lucky day - I will share the benefits of that inner view with you!

A quick recap: in preparation for my four month follow-up visit with Dr. SuperSurgeon, who did my liver resection, I had to have a CT scan. The CT scan came back showing something suspicious on my liver, so my oncologist recommended a PET scan to see if it's cancer.  They moved the paperwork through the system quickly so I could bring all the information to Dr. SuperSurgeon. The CT was already on a CD, collecting dust and crumbs in my purse, ready to take to San Francisco.  On Monday, I added the PET.

I hadn't looked at the CT because I know I can't interpret it - they kind of look like a film noir murder scene; one gray organ gently blurring into the other.  Besides, I'd read the radiology report which had already scared the crap out of me. But, I was curious to see the PET scan, both to see if I could find cancer and just to see my insides in color.  I loaded it on my computer.

Because I know that every single time you peeps sit down to your computer and load But Doctor, I Hate Pink, you say to yourself, "I sure hope Ann posts a picture of her liver today," I am finally going to grant your wish (you will need to click to see it all):

Interesting, yes?

There is cancer terminology you may not be aware of, and that is the phrase "light up" when referring to something on your PET scan. We all say our scans "lit up like a Christmas tree" when they show a lot of cancer.  Where the correlation between Christmas and cancer comes in, I can't say.  Personally, if I'd invented the simile, I would have said "lit up like a suicide bomber" or "lit up like cigarette lighters at a meth house" or something a little less festive than Christmas trees.  But, I don't make the rules, I just follow them.

So, I am happily sitting down, snacking on pretzels, when I open my PET scan.  The above is a still image but when you see the PET in real life, it is interactive.  The gross little skeleton on the right rotates around like a Russian dancer,  and you can move the green bulls-eye thing to focus in on specific areas - if you can catch it, that is,  the rotation is fast.  There is also a magnifying glass that highlights any interesting spot you desire for close-up view. As I bit into my pretzel, I was horrified to see that in the area of my liver, right where that growth had been seen, was a very bright light.  As you can see, circled above,  it definitely looks like a Christmas bulb or cigarette lighter that somehow got stuck in my liver.

Well, shoot. Cancer really is back, and only a few months after surgery.

I spent the next few days trying not to be disappointed, yet mentally planning my last ever birthday party, telling myself I really should finish at least one scrapbook (but not actually doing it), and eating extra coconut popsicles and Sees candy because - well, why not?  I also felt bad that I could not provide a good statistic for any future women with limited mets who might want surgery.  It's a big burden to know you let down the surgical future of breast cancer treatment.  I was also really upset at the thought that I wouldn't be around to see my son graduate from high school. That kid is a hard worker and I wanted to see him off to college.  I also just know that without me, my husband is going to pick out some hideous dorm decorations for the boy, and will probably forget meaningless stuff, like sheets.

I forgot one teeny little thing:  I am not a radiologist.

CDs in hand, my husband and I drove to San Francisco.  Once in the exam room, I spoke to Dr. SuperSurgeon's doctor-trainees-assistants about my medical history since the surgery, which consisted of my horrifying c-diff tale. That generated a lot of questions, but I also managed to mention that I expected that my cancer had returned.  I handed them the CDs, they left the room,  and my husband and I awaited the confirmation of bad news.

Dr. SuperSurgeon came in, and I prepared myself.   He looked at me and said something disappointing: he was not able to open the CD the PET came on.  Apparently, all that skeleton rotation and magnifying glass stuff is caused by a proprietary program that conflicted with other programs on their computer system, so they couldn't see it.

But then, he said something wonderful. Based on the CT (which he could open) he would never have even ordered the PET.  He saw normal surgical changes and nothing concerning at all.  He also said that sometimes a PET scan can show uptake (doctor-lingo for "Christmas tree lights") after resection and sometimes radiologists didn't recognize normal ablation changes on CTs and PETs.

Of course, to be sure, he, along with a radiologist, will go over the PET, (presumably after they get tech services in there to open it). They will call me when they know for sure.  But for now, they believe I am fine.

I have one concern:  if radiologists are always going to interpret my surgical changes as suspicious growth, then how am I ever going to get accurate news?  I can't run to San Francisco every time I have a scan, and I don't want a PET scan every time I have a CT scan either.   Somebody is going to have to figure out how to read my scans.

Maybe it's time I go to radiology school.

I might even have time.
.

Conspicuity

Isn't conspicuity a great word? I had never heard it before, and when I saw it on my latest radiology report, I was intrigued. It's pretty obvious what it means by the sound of it, but just for fun, I looked it up:

The property of being clearly discernible; The state or quality of being clear or bright; brightness; conspicuousness

So, what has conspicuity? My health? My mental state?

Sadly no. It appears that there is a "rounded lesion of low attenuation measuring 1.6 cms near the linear posttherapy defect in the right hepatic lobe with increasing prominence and conspicuity when compared to 12/23/11."

Ladies, don't you want to meet the guy who wrote that sentence? Hawt.

This "prominence" is in the area of my liver that was ablated; the section they couldn't reach with the knife.

Does that mean I have cancer growing there again? Maybe. Maybe not. Probably. I hope not.

What it means for sure is I have to have a PET scan again. A PET, in case you have forgotten, is the most boring medical test in the history of tests, and I'm dreading it. Asking me not to move even a finger for an entire hour is like asking Mitt Romney to say something interesting to a crowd. Not gonna happen.

Because I'm seeing Dr. SuperSurgeon on Wednesday, we had to rush the PET through, and once again, I have lots of people to thank for being on the ball and making this happen. My doctor's secretary, the RAS folks, they treat me good, no doubt. My PET is Monday and I should be able to bring the CD with me to San Francisco on Wednesday.

The rest of the radiology report was good. My intestines are healing and show no obstruction, although there are still boo-boos on them. (Bowel distension and resolving pancolitis which has shown "interval" improvement) Nothing shows abnormally in my heart, lungs, stomach, kidney or bones or any lymph nodes. So, while cancer may be growing back where it once was, it is not yet travelling throughout my body.

I would like Dr. SuperSurgeon to tell me that they can zap this out, assuming it's cancer. Yes, I would face that again. But my intestinal problems and possibility of relapsing c-diff complicate any treatment they may want to give me.

We shall see.

Anyway, one thing I can say with great conspicuity is that this cancer thing.... sucks.



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Dear ANN SILBERMAN,

I love my insurance company. I have no complaints about them. They have approved every test, every treatment, and every single thing I've wanted to do about my cancer, even when it isn't a normal treatment, like liver resection. I have not gotten any big bills or any surprises. Referrals and authorizations happen within a day or two and birds sing and bees buzz when they are around. I highly recommend them to anybody who has a terminal illness.

But, they keep sending me these letters.

Dear ANN SILBERMAN,

Keeping track of healthcare needs can be challenging for all of us. We are here to help. If you are due for care, please schedule a visit with your doctor. You are due for:

Colorectal Screening: Rates of colon cancer are decreasing because screening can find pre-cancer and treat it before cancer ever develops.

Cervical Cancer Screening: It's time! The American Cancer Society recommends a PAP test every 1-3 years based on your medical history. Please make an appointment with your PCP or OB/GYN for your Pap test.

Sincerely,

Your Health Care Team

I get these letters every other month or so, and I throw them in the round file, ignored.

Maybe you don't know this, but once you have cancer that has metastasized to another organ, you don't really need screenings to go looking for cancer anymore. You've already found a sufficient amount.

Based on my medical history, I've kind of moved past screening mode and gone straight into treatment mode. I have regular CTs of my insides, which will show anything going on, so taking a few cells off my cervix in a cancer hunt seems pretty old school at this point.

Yes, one of the beauties of Stage IV breast cancer is you never have to have a screening colonoscopy. Honestly, that's one of the first things I thought when I found out my cancer had metastasized. "I guess I won't have to do the 50 year old colonoscopy thing now, thank God."

That's how badly I don't want a camera up my butt.

As far as keeping track of healthcare needs, I think I am managing just fine, thank you very much. Last week alone I had an appointment at Nuclear for a MUGA, then two days later at my oncologist's office for a Zometa drip, and then yesterday I had one at Radiology for a chest/abdomen/pelvic CT. That, my friends, is three appointments in one week, none of which I missed or was even late for.

That doesn't even include several phone conversations trying to reach the infectious disease guy, which were unsuccessful. I am, apparently, only allowed to speak to him through his very unpleasant secretary. I am going to have to find a different doctor to treat C-diff, maybe get a referral to a GI doc. Which, will happen fast with my insurance, and who will not be allowed to put a tube up my butt.

In any event, I am the Queen of keeping track of my healthcare needs, and don't need a letter to help me with the challenge.

Next week is my down week; one appointment only. I see my oncologist on Wednesday.

But, it's a biggie - I get the results of Friday's CT.

For the first time, I don't want to hear what it says, good or bad.

Maybe once in a while my healthcare needs include denial.

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Hard Luck Hannah

At my last appointment with my oncologist we went through the usual routine: he checked my blood, asked me questions about how I felt, how much I'd recovered from C-Diff and typed all my responses into the computer. He told me because I still had stomach pain he couldn't give me chemo. I mentioned, off-handedly (ha ha!) that I was now getting frozen shoulder on my left side, and he said that I can't let that happen. (Okay shoulder, cut it out.)

At one point, out of the blue, he said sympathetically, "You are a bit of a hard luck Hannah."

My ears perked up at that. "Hard Luck Hannah?" I knew what he meant, but where did that phrase come from? What year was it from? Where had I heard it before? Who was Hannah?

I pictured a 1920s flapper woman with marcelled hair, silently kicking and screaming as a mustachioed bad guy ties her with a thick rope and puts her, helpless, on a black and white railroad track. Or, maybe Hannah was a cartoon character with spiky black hair; a plucky young girl on her own with no family - one who finds it easy to make friends with millionaires. Or, could Hannah be in a song, and who would have sung it? Kurt Cobain? Tony Bennett? Glen Campbell? Maybe Hard Luck Hannah was a swing song by Benny Goodman and recreated by Big Bad Voodoo Daddy?

I completely lost track of the appointment and the doctor, lost in my Hannah reverie. It was all I could do not to pull my iPhone out right there and search for 'Hard Luck Hannah Derivation.'

But wait.

It's probably not good when your oncologist calls you a Hard Luck Hannah, right?

It definitely has different connotations with each specialty. If your Internist calls you a Hard Luck Hannah, he could be referring to anything from your penchant for tripping on the stairwell to your tendency to get colds. When it's your psychiatrist, he might say something like that in sly disbelief, like you are pretending that all these bugs are crawling on your skin. But, when it's your oncologist? I shudder to think what it could mean for the future if Hannah doesn't get off my back.

Frankly, I really hadn't considered myself a hard luck case before. In fact, I thought I'd had it kind of easy and been kind of lucky. Yes, you heard that right, I've considered myself lucky - if you keep that in context.

Sure, as a Stage II I had to have a mastectomy and do six rounds of chemo and a year of herceptin, but I hadn't found the chemo to be that difficult. Yeah, my cancer had metastasized, but only to one organ, and I was lucky enough to be able to get a rare and groundbreaking surgery to try and fix it and maybe get some extra years. True, I got one of the worst cases of C-Diff the infectious disease specialist had ever seen, but hadn't I lived through it and AND kept my colon?

What hard luck?

I suppose some folks think getting cancer in the first place might be hard luck but I just kind of think of it as life.

I haven't been thinking of myself as Hard Luck Hannah and am not so sure about it being my new diagnosis. I can't say I've been thinking of myself as Good Luck Gertie either, but I did think other people in my same situation may not have been as lucky as me.

I guess it's all in your perspective. I think I'll continue to believe I'm on the good side of a bad situation.

Anyway, my searches came up with nothing (except that Hannah seems to be a popular name for dogs) and I still don't know the derivation of the phrase. Not being able to find all the information my ADD head requires IS bad luck. So, if anybody knows for sure where the phrase Hard Luck Hannah come from - please share!

Video - Top 3 Tips for Getting Through Chemo

I was contacted by a company, Breast Cancer Answers, to do a video on my three best tips for getting through cancer. Before I agreed, I checked out their website to be sure this would be of value, and I found they have a ton of usable information, especially for those who are newly diagnosed. There is nothing like hearing what works from somebody who has "been there, done that."

They have lots of other video tips from women who have been in treatment, as well as Q&A from Dr. Jay Harness, who is past-President of American Society of Breast Surgeons. Not only does he have a Questions and Answers section - but if you find you have a question that is not already there, you can ask it yourself. How cool is it that you can ask a question from a real doctor, one who doesn't have 30 patients waiting behind you, and get a response!

They also offer a checklist of 15 questions to take with you to your first doctor visit after diagnosis, which is always valuable during those frightening, early days. The questions are usable whether you'll be seeing an an oncologist or breast surgeon. These are questions that you do need to know and at the early stage of shock and probably not knowing much about breast cancer, may not even know to ask. I didn't.

Now, before watching the video, keep in mind, I had to do all this talking using my chemo-damaged brain in one Skype session with no notes, so be nice as I stutter through my thoughts!

Here are my 3 top tips for getting through your rounds of chemo. These tips are good no matter what your Stage is. After you watch this, check out that site and watch some videos, you'll find it valuable.