Friday was a little busy.

My friend Jen and my sister Leasha were in town for the wedding, so we got up at 6:45 and were out the door for the drive to Stanford with all of our stuff that we needed for my wedding and the party to follow packed in the car. 

It took almost exactly an hour to drive down there, and then we were shown to an exam room that would be our home base for the next four hours.  Several different groups of people came in to talk to me - nurses, oncologists, a social worker, a surgeon, a nutritionist, a study coordinator for a clinical trial that was interested in hearing about me, and a physician's assistant whose job it was to walk me through the process, and then "present" my case to the Tumor Board.  At one point there were 9 people crammed in a standard sized hospital exam room - me on the table with my shirt off, doctors taking turns checking me out, Jen and Leasha in chairs watching. 

After a while they left and a nurse came back and told us we had an hour break while the board met to discuss the case, so we found went off in search of coffee and breakfast.  When we came back, three people came back to talk to us about the board's decision and recommendation.  As a basic course of treatment they recommended exactly what my other oncologist recommended - several cycles of Adriomiacyn and Cytoxin (AC), and then 10-12 rounds of taxol/taxotere (different brands of the same drug).  So that is a huge relief. 

The second thing is that they want to recruit me to join a study that Novartis is doing worldwide that Stanford and most of the other major research hospitals are doing on triple negative tumors.  If I join I'll be the third from Stanford, out of 200 they intend to recruit worldwide.  Details here.

It's a phase two study to see if this drug (that doesn't really have a name yet) helps Taxol to target and shrink triple negative tumors faster than Taxol alone.  It has been used successfully and safely (relative term there, it's still poison) in other cancer studies.  Typically you do AC first, and Taxol second, but there's no real therapeutic reason to do it in that order.  So the study would flip that order and do Taxol first, then AC.  If I join, I'll be randomized, but it's not a blind study.  So I'll know if I'm getting the extra drug or not from day one.  If I get the drug it may help, but won't harm.  If I don't get the drug, I get the exact course of treatment that both oncologists agreed upon as the standard of care, so there's no risk to me. At the end of the Taxol phase they would measure the size my tumor(s) to compare against other study participants to see if the new drug helps.  For the AC portion I would still be treated by Wexler at Alta Bates. 

The only risk is the delay it would take to get me into the study itself.  I have an appointment for a full body PET scan first thing in the morning, and then another one with my surgeon at 1 to take a look at my port.  I'm going to try to get in to talk to Wexler too to get her opinion on the study.  If she says that waiting a week wouldn't make a difference I'll do the study, but give Stanford that deadline.  If she thinks I must start on Tuesday, then I'll start chemo on Tuesday at 1 as scheduled.  I don't see a downside either way.  Even if I end up on the control arm on the study, that's a real contribution that could impact other triple negative women down the road, and I'm happy to participate in it. 

So that's that.

As soon as we were done with Stanford we drove to Kensington so Inca could do my hair, and then to Berkeley so the girls at Benefit could do my makeup, and then to the courthouse for the wedding.  We had to be there by 3:45 to be guaranteed to be married that day.  I rolled in at 3:43.  No stress there.  :) 

We did the paperwork and then waited a bit for the ceremony itself, which happened around 4:30.  I was so entirely absorbed in our own stuff, that I didn't know that the ban on same-sex marriages had been lifted at 3:30, so the very next couple to be married was the first same-sex couple in Oakland under the new rules.  Which is awesome, and I would have stayed to see it if I had been paying attention.  But I wasn't. 

We ended up with 46 at dinner at Otaez and had a wonderful time seeing everyone.  For an Emergency Cancer Wedding, it was the best it possibly could be and I am so happy that we chose to do it this way. 

Now everybody has gone home, and I am exhausted beyond belief.  Gotta be up in 8 hours 17 minutes for the PET scan, so I'm out. 

Port installation, more biopsies, fun with pathology departments...

Huge thanks again to Lani for getting me to the hospital yesterday for my port surgery.  I got there just before 1:30 (as expected) to check in for a 3:30 surgery that was supposed to take 60-90 minutes.  So I did all the intake stuff, got into the hospital gown, and got my IVs going.  Everything was on schedule, they took all my stuff (clothes, purse, phone, kindle) and locked them up for me since there was nobody to wait through the surgery (Bob was still at school).  All good. 

And then an emergency exploded appendix came in, and my surgery got bumped for several hours.  We were originally worried that I'd be done and have to wait a few minutes for Bob to finish school to pick me up.  He actually got there before they took me in.  So the worst that happened was that I was bored stupid and read several months worth of Us Weekly that the nurses brought me from the waiting room.  Surgery took about 90 minutes, and then recovery room, and then we drove to walgreens to fill my percocet prescription.  (Why the hell can't they give you that prescription the day before?  Because what I really want to do after having surgery is go sit in a Walgreen's parking lot for half an hour?)  We didn't get home until after 9:30. 

 I've now got a hole about halfway between my armpit and my neck, which is where they went in to connect the line to my vein, and then the line goes down between my boobs to a thing that feels like a bottlecap which is the actual port, so you won't see it unless I wear a seriously deep v-neck.  Can't take the bandage off for a few days to see what it actually looks like.  

The worst thing is that I can't take a shower until tomorrow night.  Today was hot and humid and I feel pretty gross. 

This morning we got up bright and early and went back for round two of biopsies.  I was incorrect about what the MRI turned up - it was two lymph nodes, not a second tumor site, so they did a biopsy of those.  One in my armpit, and another deeper in.  They went in sideways again so that needle was about five inches deep.  It took about two hours.  Then we spent the rest of the day with me ingesting as much percocet and caffeine as I could handle, tearing around town and doing last minute cancer and wedding crap - pick up rings, order cupcakes for dessert on Friday, pick up slides from pathology so I can hand carry them down to Stanford on Friday, prep the house for company, pick my sister up from the airport.  Craziness. 

Now we're home, Leasha is settled into the guest room, Bob's working on homework, and I'm off to bed.  Tomorrow is all about girly stuff - Leasha and I are going for eyebrow waxing and associated facial hair adjustments in the morning, hopefully Jen will get here around noon (she's driving up from LA) and we'll have time for a good lunch before mani-pedis at 2:30, and then relax a bit before my "bachelorette party" at 6:30.  I don't expect it to be a late night since we have to gather all of our stuff for the wedding and leave for Stanford by 7:15 am on Friday morning.  I am trusting in percocet and adrenaline to get me through.  :) 

Meanwhile, Bob's good friend John is flying in tomorrow night, as are four out of five of our parents (Bob's mother Cindy lives in Uganda and won't be able to make it).  I'm hoping to be able to see them for a bit tomorrow night, otherwise I won't see anybody until we're actually at the courthouse for the wedding, which seems a little nuts since they came all this way. 

Heading to the hospital for the first surgery.

I'm heading in to Alta Bates to have my port installed.  I'll live with this thing on my clavicle for the next six months or so.  I have to be there by 1:30, surgery is scheduled for 3:30 and should take less than an hour, but they expect that late surgeries run later and told me not to expect to be released until after 7 tonight. 

I had to be nil by mouth for 8 hours, so I got up at six to have some breakfast.  It is so hard not to just grab a glass of water when you're thirsty.  I've caught myself twice doing it on auto-pilot. 

Thanks to the "big storm" we're having, they canceled all flights from Santa Barbara today, so my sister couldn't be here.  She's hoping to make it tomorrow.  The storm is so bad that I can see SFO clearly from my living room (across the bay in Oakland).  It's overcast and drizzly, no wind. 

Big thanks to Lani for stepping in and offering me a ride to the hospital so Bob doesn't have to miss too much school.  Trying to draw the line between letting him take care of me and making sure he gets the things he needs to do finished is going to be really hard. 

i has a tired.

Today I worked some in the early morning, and then went back to the oncologists office to meet with the nutritionist lady who told me that everything I'm doing is fine.  And then I was exhausted and came home for a nap.  When I got up from my nap I had to drive back and get an echocardiogram, to set a baseline for the drug that will do damage to it over the next couple of months. 

Running around the house like crazy, trying to make sure Leasha will be comfortable when she gets here in the morning.  I can't eat anything after 6am.  Check into Alta Bates at 1:30 for a 3:30 surgery which should take about an hour.  And then I'll have my chemo port.  Yay!

Of course it's kind of useless since United Healthcare hasn't bothered to approve the chemo drugs to put in that port yet, but this is progress, right?
 

Doesn't every girl dream of spending half her wedding day at the Stanford Tumor Board?

Earlier in the week I asked for referrals for a second opinion on my treatment protocol.  Fisher recommended Stanford over UCSF because UCSF takes uninsured and indigent patients (which is AWESOME of them), but means that they are a lot tougher to get in to see on short notice. 

So a lot of university/research hospitals have these "board" programs.  The idea is that instead of seeing one doctor who refers you to the next doctor and you sort of daisy chain care together, you see all the doctors at once, and they talk about you right then and there and make recommendations for treatment. 

I had a choice between seeing a medical oncologist or seeing the board, but they only time the board could see me is 8:30-12:30 on Friday.  Which will give me 2.5 hours to drive back from Stanford, eat lunch, get dressed, and show up at the courthouse for the wedding. 

But I'm really happy about it - the stanford board consists of a surgeon, medical oncologist (the chemo people), radiation oncologist, radiologist and pathologist.

I like Wexler and Consorti, and do expect to get treatment with them as of right now, but it's good to hear from the cutting edge research people too.  And if the answers I get from there are completely opposite to what I've heard from Wexler and Consorti, then I'll know to look for a tiebreaking third opinion. 

The scheduling nightmare begins.

Today was completely nuts.  I've been trying to get in to see the oncologist (Wexler) that the surgeon (Consorti) referred me to, but Wexler was going on vacation and they weren't sure they could fit me in.  I've been playing phone tag with their office.  So this morning at 11:30 I call again and get the receptionist in Wexler's office, and said I know she's going on vacation, but since I got this bad MRI that indicates it's spreading fast I'd really like to see somebody in the practice so we can get going on chemo ASAP, even if we have to start without a port, or get the port in sooner.  Girl on the phone says sure and asks for my name, and then says "What, wait, aren't you here right now?"  Apparently the girl on Friday got me on the schedule for 11:45 this morning, but in all the phone tag nobody actually left a message saying I had an appointment.  So all of the sudden I was late. 

So I go tearing out of the house in the mismatched clothing I was wearing to walk the dog at 6 this morning, no shower, just gross.  The fact that I was "working" this afternoon entirely left my brain.  I got really lucky and didn't accidentally stand anybody up for a meeting.  I made it in by noon and they walked me straight into the exam room to see Wexler and told me we could do the paperwork later.   They were highly apologetic and this is really the only snafu I've had so far.

She agreed sooner is better, but the first drug they are going to give me is apparently notorious for eating through skin and collapsing veins and basically not worth the risk if you don't have the port in.
 
So they are going to try to get me in earlier to get the port, but we're not sure if it's going to happen. While I was there they gave me a tour of the chemo rooms, which are not fancy but seem quite comfortable.  They have two private rooms which are first come first serve, and then one bigger room where there are four big comfortable chairs and a the nurse who manages care there.  They have wifi and a DVD collection and room for friends to sit with me. 

For now, my schedule looks like

Monday 10:15 - meet with a nurse practioner/nutrition specialist who will go over the drugs I'll be on, possible side effects, and recommended nutrition during chemo.

Monday 3:00 - echocardiogram to assess risk levels for one of the drugs that can destroy my heart

Tuesday 1:30 - port placement (unless they can schedule it sooner)

Wednesday 8:30 - biopsies for the spots that popped up on the MRI if they can find them on ultrasound - one lymph node and one likely new tumor

Still to be scheduled - full body PET scan to see if there are other tumors hiding elsewhere, and a brain MRI.  Neither of these are required before I start treatment, they are just to set baselines to watch over the next few months. 

If they can get me in to start chemo on Wednesday afternoon or Thursday I'm going to do it, even if it means being sick at the wedding.  If they can get me in to do the port tomorrow or Friday I'll start chemo Tuesday, but that seems unlikely given how packed the schedule already is.

I don't feel sick yet, but I do feel exhausted.  

MRI, more test results

So I woke up bright and early (well, not really, I'm just not used to being out in public this early) popped a valium, took the dog for a walk, woke Bob up, and headed down to Alta Bates for the MRI.  Took another pill when I walked in the door.  And then took another when they put me in the dressing room.  I was good and looped, and I needed to be.

The MRI is an incredibly tight fit for me.  Another five pounds or so and I wouldn't have been able to get inside it at all, I think.  They set me up with an IV line for a saline drip and then the contrast fluid before I climbed on the table, and then once I was on it they hooked me up.  The room was very cold.  The machine puts out a lot of heat.  And the saline was cold.  Very weird sensation.  After about 20 minutes in the machine they switched over to the contrast fluid in the drip.  It was colder than the saline, and I could taste it, which was REALLY WEIRD.  I was in there for another fifteen minutes or so - 10 of imaging and then a little longer while they confirmed the images were usable.  Thank goodness they were.  Despite all the drugs I was losing it.  Then when they pulled the table back out of the machine and I could get up, I couldn't.  Between the drugs and just being sore from lying still and face down for so long.  It took a while to get off the thing.

Bob had to prop me up and steer me toward the car as we were leaving.  We drove through McDonalds and I ate something and then went straight to bed.  I woke up once for a couple of phone calls and then crashed again until about 3.

So now I have more news, none of it good.  Pathology is back, and I am triple negative.  So, that means most of the treatment options are not available to me.

The other bad news is that the MRI did exactly what it was supposed to do - identified two other hot spots that need to be biopsied.  The first one is an inflamed lymph node, and the second is probably another tumor, but smaller.  I'm waiting for the scheduler to get me in for those biopsies with the same doc I saw a couple weeks ago. 

How to help!

Several people have asked how they can help.  If you're local, you can send an email to Mo (piegirl at gmail) and she'll add you to the lotsa helping hands site she's created for me. 

To help take some of the burden off Bob, I expect that most of the help we'll need is going to be around rides to and from appointments if I can't drive myself and occasional help with food deliveries or shopping. 

Crabby? Get it? I might need more coffee.

On Friday, June 7, I was diagnosed with breast cancer. Because I am lazy, I will just copy this bit from Facebook right here:

It will be another couple of weeks before all the pathology and genetic tests come back, so we don't know my exact course of treatment yet. So far, it is presenting exactly the same way my sister's did a few years ago - there was nothing there last month when I had my annual exam and my doctor checked me. There was something different, but not too different when I checked myself on May 18, and then that week it grew up to a 2.4 cm mass that was creating a visible bulge on my skin by May 25.

Even though we don't know exactly what the treatment will be yet, we do know that I will need chemo. I'm scheduled to have a port installed on my clavicle on June 25, and by then we should have the rest of the information that will determine the course of treatment.

--------------------------

The information we're waiting on is whether or not this is hormone receptive, and if I have BRCA 1 or BRCA 2 in my genes.  My sister has BRCA 1.  The hormones will determine what treatment options I have with chemo, and whether or not I'll need radiation.  The genes will determine if I need to have a bi-lateral mastectomy and have my ovaries removed. 

For now, I've got an MRI appointment in the morning at Alta Bates in Berkeley.  I'm a little freaked out by this - I'm normally not claustrophobic but my upper body is literally the same diameter as the tube in the machine, so it's going to be physically right up against my back for the thirty minutes I'm in there.  I can breathe, but not deeply.  I've been told that I can take a double dose of valium to help me through that, and then Bob can peel me off the table when it's over and I'll go home to sleep it off. 

I'm still working with the oncologist to get an appointment this week.  Unfortunately it's vacation season so everybody with kids seems to be taking time off in the next few weeks.  Fortunately, we can't make any decisions until the pathology is all in, so it's not like this is actually delaying my treatment. 

Some people have asked about getting a lumpectomy now.  After talking to several people I've decided not to - there's no difference in mortality as long as I can get chemo started soon.  So it's really psychological.  I've decided that I can stand to leave the thing in as long as I know we're doing something proactive.  The plan we've worked out with my surgeon (Consorti) is that we'll do two rounds of chemo, check the size, and if it has shrunk we'll know the chemo is working and leave it in place.  If it has stayed the same size or grown, we'll do the lumpectomy then.  I feel like there's little reason to take the risks of an extra surgery now if there's no long term gain for me.