Re-Ported

We had a great trip to Michigan. The first round back on Tykerb went pretty well. I definitely had some downtime when I felt crappy, but nothing scary. The house we rented was great and I especially liked having a window seat and a wood burning stove. The weather wasn't as snowy as I was hoping for, but I still feel like I got my winter on. We got back last night and this morning I went and got my new port. I was relieved to have the same doctor putting the new port in that took my old one out. It just makes things easier when the person you're dealing with knows the story. We got there around 8:15 and were out of there by 11:15. Not bad really. Now we're back home and I'm resting comfortably. Once the numbing meds wear off I'll be sore, but hopefully it won't be too bad. The doctor recommended Advil, so clearly he isn't expecting terrible pain. Fingers crossed!

Relief.

I had my scan yesterday and my oncologist called me today at 11:30 (she's great!) with the news that there is nothing showing up in my chest or abdomen (my liver and lungs are still clean!). Yipppee! What a great thing to hear on my first day of the holiday vacation. Merry Christmas to me!!

This doesn't mean I'm cancer free of course. There is most definitely some cancer in my breast and it is growing, so (and I can't believe I'm saying this) I'm looking forward to getting back on treatment.

OK TO GO

I passed my tests and everything looks good except for low white blood cell counts (stay away from me if you're sick). I am good to go ahead, get my CT scan tomorrow and start treatment up again next week.

Port Free and All Scheduled

I went in on Thursday to have my port removed. I was a little nervous about them doing it with just local anesthetic, but it ended up being pretty easy. It was really surreal to have someone cutting into me and pulling that thing out while I was wide awake (no, I couldn't see anything). I was really happy to be leaving with a clear head, not the weird fuzziness you feel after more significant sedation. It is a little sore and pretty bruised, but otherwise I'm feeling pretty good. Now I just need to wait and heal up before I head in for my new one on the 29th.

In the meantime I've gotten scheduled to start back on the trial, finally! Unfortunately, it didn't turn out the way I wanted it to- The drag is that I start back on Tykerb on December 22. Since it is a 5 day on, 9 day off kind of thing, I'll be on treatment over Christmas while Keith and I are up in the UP. Urgh. This was not how I wanted it to go. I was hoping to start the week before, but no such luck. I went around and around with the trial coordinator (who is wonderful) trying to figure out another option, but there just isn't anything to be done unless I want to delay getting started by 2 more weeks (NO THANKS). I'm just going to suck it up. I'm hoping that maybe it will be slightly easier than I remember it since I have had a nice break from treatment (and I don't have a brain tumor!). We'll see...

So this week, I've got a bunch of appointments on Tuesday to make sure I'm still eligible for the trial. Really they're just checking out my heart and liver. All the HER2 targeted drugs are hard on the heart muscle, so they need to make sure mine is still going strong before I start the trial. I'm not too worried, but it'll be nice to hear that things are a definite go! If things are good, then on Thursday I'll go in for a CT Scan to get a baseline of what things look like before I get started (please cross your fingers and toes and send good vibes for a good clean, or close to clean, scan).



Red and Keith and I got out for a nice hike today in Marin County. It was brisk and windy but it sure felt good to get out.

A Little Good News

I had blood drawn when I got Herceptin and I have been curious (and worried) about the results. Specifically, I've been worried that my liver function tests and my tumor markers were going to be elevated. I emailed my oncologist yesterday (I can't tell you how cool it is to have a doctor who does email!) and everything is NORMAL! In the email I also asked her to help me get scheduled for my new port, so that will be coming down the pike too. I don't need the new port desperately but it sure will be nice to have one that works!

Just to keep you all in the loop- I definitely have some shit growing in my right breast again. I'm just hoping that that's the only spot... I'm hopeful that it is, but I guess I wouldn't be surprised if something else lights up on my pre-trial scan. I haven't been scheduled for that scan yet, but it should be happening in the next couple weeks.

Relaxing Week

So I had last week off from school and from doctors! I didn't do any of the school work I brought home, but I did have some exciting adventures.

Last Sunday Keith and I killed some time on a rainy day by looking at cars. You see, after driving everyday for two weeks to San Francisco, I decided I'd rather be driving an automatic (I never ever would have thought this would happen, but between the traffic and the hills...). After realizing that my golf was still worth quite a bit of $$ we decided we could do it and we bought a car (another golf). The car isn't here yet- the dealer found one in San Diego so it needs to be shipped up...but hopefully I'll pick it up in a couple days.

I thought I'd treat Red to daily trips to one of my favorite off leash dog parks in the area (Point Isabel) during the break. On Monday, I made the mistake of going at low tide and Red went mudding (and got a nice bath afterwards!). On Tuesday, I made sure it wasn't low tide, but just as we rounded the corner to head back to the car he stopped hunting for ground squirrels when he saw a duck out in the water. Off he goes swimming after this duck (completely ignoring me). He swam out so far a concerned crowd was gathering and I was wondering how I was going to explain to Keith that I just watched the dog drown in the bay. Thankfully the duck finally flew out of Red's sight and he turned back to shore (right around this time a curious sea lion poked his head up not too far from Red). Ugh, I am sure I sprouted some new gray hairs from that! Needless to say, Red and I aren't doing any more off leash adventures until we work on recall even with tempting distractions!

Keith and I had a nice Thanksgiving. We ate too much and were pretty lazy. At 9:30pm or so we went for a drive to check out the lines at some of the big box stores nearby. You wouldn't believe (well some of you probably would) the line at Best Buy!! There were people with tents!?! There were also lines at Toys R Us and Target. We didn't do any shopping, just some staring.

Oh, I almost forgot...When I went in for Herceptin on November 18th my port wouldn't give any blood. So after being poked and repoked and assuring the nurse that the saline was indeed going in (I can taste it as soon as they push it in) I headed down to radiology where they did a little investigating and found that the end of the catheter is right up against the wall of the vein. What this means is that they can send things in, but when they try to suck things out they just end up sucking on the wall of the vein. Actually, what this really means is that I need a new port. Not the biggest deal in the world but one more thing that will need to be done eventually. There is no big rush since I'm not on any IV chemo at the moment, but I'll probably try to get it organized before too long. The upside is that I will be getting a bigger port (not good aesthetically), but good in that it can be used for scans.

I hate to say it, but I'm sort of looking forward to getting back to work. A week off means I've had a lot of time for my thoughts to get away from me. I'm worried that after 3 months of no treatment my cancer is roaring back. I'm not a fan of this 4 week wait between radiation and the start of the trial. I know the reality of the matter is that a week or two won't make any real difference in the long term, but it really fucks with your head to know that there is cancer growing inside you and you're not doing anything about it. I should be getting scheduled for a barrage of scans and other tests prior the start of the trial. Just getting that ball rolling will make me feel better. It's strange how much of a difference doing something (even if it isn't a treatment) makes on your state of mind.

The Devil You Know

We went in to see my oncologist today and as I should have expected she had a new plan. She had presented my case to the Phase 1 Trial Tumor Board and the consensus was that I could/should go back on the Tykerb trial I was on before the brain tumor made itself known. Their reasoning is...

1. I had a really good response the first time around.

2. Trying it again doesn't burn any bridges, I can stop if I don't respond (or if I just can't deal with it).

3. Tykerb is a drug that may well keep brain tumors from popping up (it doesn't work as well at shrinking pre-existing tumors - probably what I had when I started the trial).

4. It isn't chemo, so I won't get run down physically and I won't lose my hair (seems like a silly thing, but I was kinda dreading losing my hair for the third time in 2 years).

I'm not excited to start this up again, but it seems like the right thing to do. I mean, if the experts at UCSF are recommending it I figure it's worth a try. The only sticking point (and maybe it isn't a bad thing) is that I can't start the trial for a month. One of the requirements of the trial (and most trials) is that you wait a month after any brain radiation. This means I'll be starting up again right before X-mas. Here's hoping that my present is lots of dead cancer cells!

Done!

I'm done with my daily trips to UCSF for radiation!

Onward and upward.

Not Quite Done...

I was all set to finish up on Friday, but no such luck. The office was closed on Friday in observance of Veterans Day. I was disappointed, but what are you going to do? It just means I have to go back tomorrow for one more zap. I can't wait to finish up this stage and move on to whatever is next. I've got a doctor's appointment on Tuesday morning and we'll talk about what comes next. I'm suspecting that I'll go back on Tykerb (at the normal dose so fewer side effects) for a bit and then maybe another trial. We'll see.

The brain radiation hasn't been too bad. I have a couple sore spots on my head and I get a low grade feeling of ick after radiation but other than that I'm hanging in pretty well. I'm falling asleep a bit early (even for me), but at least some of that is probably due to the time change (or at least that's my excuse). Thankfully I haven't yet experienced the significant fatigue that I was warned about. The doctor says it could still crop up, but it is a good sign that I haven't had any issues so far.



One day last week I rolled up to the emergency room parking lot (yes, I get to park for free in the ER lot - a perk of having daily raditation treatments!) and I felt like I was entering a movie set. They were having some kind of drill (I suspect it had to do with something radioactive because there were geiger counters around). I couldn't resist taking a couple of pictures before I descended into the dungeon that is the radiation oncology department. I just can't decide which is creepier- the people in the suits or the duck-tape dummy...

The Mask

So, my first two radiation treatments are done. I'm already losing my patience with how late they run, but more on that later.

Today it took extra long because there was "a glitch" in my program. I don't totally understand what happened, but the computer detected movement as it switched from my right side to my left side and it had to be reset before we could continue. As they fixed the problem I was unlatched from the table and snapped this picture of my mask...

So far I'm feeling ok, a little weird, but nothing terrible. Hopefully things continue to go along pretty well.

I'm OK to go!

So, on Friday I headed over to San Francisco for my radiation simulation. They put my mask on, locked me in, the techs left the room and shut the crazy heavy door that protects them from what I'm getting (?!?), and they took a CT scan of my head. All this is to make extra sure they laid everything out just right and nothing is going to get radiated that shouldn't get radiated. After the CT, my radiation oncologist took a look and says everything looks excellent. Now I'm good to go ahead. I will be starting my radiation treatments on Monday at 3:30. So everyday for 2 weeks I'll head over to UCSF for a quick dose of cancer killing radiation.

In the midst of all this I went to see my medical oncologist on Tuesday and it looks like the cancer in my breast is growing back. She suggested I go back on Herceptin for now and see if it does any good. Normally they don't want you taking anything while you're on radiation, but Herceptin is so benign I got the go ahead. The great thing about my doctor is that she has a plan- We'll keep an eye on things after radiation and if Herceptin isn't keeping things in check, we'll add Tykerb back (at the normal dose so I won't be so sick). If those two aren't doing what we want she has a clinical trial she'd suggest I try. I love having a plan (although we all know the plan is subject to change at any moment).

For a second here I'm just going to complain: Sometimes dealing with cancer itself is easier than dealing with all the stupid crap surrounding treatment of said cancer. I went to work on Friday, ran out of my last class and jumped into a waiting car (driven by Keith) to head for my radiation simulation. I didn't have any options for my appointment time (urgh!!) so I had to be there on Friday at 1:30. The nice part is that traffic was favorable on the trip over and I was out of there by 2:00pm or so, not bad! I had my appointment for Herceptin across town at 3:30, so we headed over there to see if they could get me in earlier but no dice! No problem, we grabbed a bite to eat and headed back around 3:00. At 3:30 I got pulled in for my infusion only to be told that they don't have an order for the infusion, ugh! So, they call and try to get this sorted out, and Keith and I spend (are you ready...) 3.5 hours in the infusion room. Now, 90 minutes of that is the actual infusion part, but still!?!? Ugh. I hate shit like that. Oh, and to make matters worse, while I'm sitting there waiting I got a call from the woman who helped me schedule an ultrasound (to get a baseline of what is going on in my breast). She says I can't just get an ultrasound; I need a mammogram too. Mammograms are unpleasant to say the least and I've had 3 in the last year, why do I need another when I can point to the problem area!?!? Oh, and this process takes for fucking ever! I never get in and out of the mammogram/ultrasound office in under 2 hours (tests only take 30-40 minutes). So now that I need two tests, I can't get it done before my radiation appointment unless I take time off from work (which I am loath to do with my sick day count dwindling away). Needless to say I was one cranky person, I don't know how Keith put up with me!

Just in case all this wasn't interesting enough, Red has been keeping things interesting... Last week Red had to have a tooth pulled (after an accident during a game of fetch). While he is recuperating he can't play with tennis balls (a big deal for a ball obsessed dog) so Keith was playing with him with a balled up bandana. Seems safe enough, but Red ate the bandana...So another trip to the vet and Red was sent home with orders to monitor him closely. Everyone is hoping the bandana will come out the other end, but there is a chance it will block things up and then he'll need surgery!!! Ugh. We're watching him carefully and so far there's no sign of the bandana, but he isn't showing any signs of sickness either, so no surgery yet.

Decision Made

I chatted with my medical oncologist today and she had already spoken with the radiation oncologist and was ready to give me her opinion on what to do. She suggests that I avoid whole brain radiation because, and I quote; "I expect you to be alive for a long time" and she wouldn't want my quality of life to suffer as a result of the cognitive problems that arise after whole brain radiation. The radiation to the posterior fossa will "clean up" anything that is left over after surgery and then they'll monitor me closely and use gamma knife to zap anything that pops up later on. I really needed a doctor to give me their opinion and their reasoning. I wish I had pushed the radiation oncologist to do it when I saw her, but the reality is that I have more history with my medical oncologist and would have wanted to talk this over with her anyway. So long story short, I'll be going ahead with radiation to my posterior fossa (back of the brain). The next step is scheduling and I'm hoping that I'll get a call tomorrow to get that started...

Decisions, Decisions

So I went to see the radiation oncologist today (poor Keith stayed home - all this crap is finally catching up with him and he caught a nasty flu bug). As usual, I recorded my appointment. This probably seems weird to all of you, but it is really helpful to replay some of my appointments afterwards and get some of the nuances. This time is was more important than usual since Keith wasn't there and because I have options. The radiation oncologist was very pleasant and laid out the two options for me.

Two weeks of whole brain radiation is the standard of care for my situation. The upside of this is it should kill off any micro-metastases in my entire brain. The downside is that it can cause a certain amount of short term memory problems.

The other option is two weeks of radiation to my posterior fossa (the back and lower portion of my brain). The upside of this is that it won't cause any short term memory problems. The downside is that if there are micro-metastases in the top/front of my brain they won't get cooked.

If I choose the latter, I'll be very closely monitored so if anything new "pops up" they can zap it with a targeted beam of radiation (cyberknife). I've relistened to my conversation with the radiation oncologist to try and figure out what she thinks is the best option and I can't quite tell. I hate it when doctors don't just tell me what to do! They're the ones that went to med school!?!? How the hell am I supposed to decide? I guess I should have just asked her straight up what she'd recommend (maybe I'll do that...). In the hopes of getting some guidance I've emailed my medical oncologist to see what she thinks. In the meantime I'm going to sleep on it and maybe I'll come up with more questions for the radiation oncologist.

In other news, Keith and I had a great day trip to Yosemite on Saturday. It had snowed there during the week, so up in the high country there was still a lot of the white stuff. The views were amazing and we even squeezed in a quick hike in the snow! Here's a shot of my scar with some of that gorgeous scenery.

I went back to work part time last Wednesday. I wasn't sure it was the right thing to do on Tuesday night (I had gotten used to laying around), but it felt good. It's nice to be just part-time while I recouperate and figure things out, but I think after this week I will go back to full time. It sounds like I can work through the radiation treatments pretty easily and they will work with me to create a schedule.

There is some big news on the in-law front! Keith's mom and dad made it home for the weekend!! This is only the second time they've been home since this whole nightmare started back in April. From the sound of it, things went smoothly, although it was a lot of work getting all moved out of the hotel. They've headed back to Duluth for a week of speech therapy and doctor's appointments, but hopefully they'll head home again next weekend.

Stitches Out

So, it has been almost two weeks now. I had a nice week last week with my mom, she drove me around and kept me company. I wasn't the most fun to be around (steroids make me a cranky thing), but she was a great sport. At this point, I'm feeling pretty normal physically. My neck is still a little stiff and I still have a hard time getting comfy at night, but sleeping is getting better as I ween off the 'roids. I'm looking forward to being all done with steroids by the end of the week. There may well be more in the future with the radiation, but I'll deal with it when it comes.

Keith and I headed to UCSF today to see the nurse practioner who works with my neurosurgeon. She took out my stitches and answered some questions for us; I have a couple of titanium plates in my head. They cover up the holes they drilled in my skull and keep things all in place. She also told me that I am ok to drive (yippeee!) and I can go back to work part-time (although I need to be careful not to overdo it).

The next step is to see the radiation oncologist in a week. She will talk us through her recommendation. There are several different possibilities as to how to proceed with radiation and from what I read there is a lot of debate about what the best approach is. Of course the approach will be tailored to my specific situation and I have to tell you I'm really curious to hear what the experts at UCSF recommend!

OK, so here's a photo of my frankenstein like stitches...I'll spare you the more bloody pictures when I still had a drain in.

I had brain surgery a week ago, WTF!?!?

I don't have much to report and that's a good thing. I am feeling good (thanks to good protoplasm according to my neurologist). I can't believe a week ago at this time they had my skull opened up! I'm off all pain meds, weening off the steroids (the sooner the better, they make me feel like I have had 10 cups of coffee) and other than a tight feeling and a crazy scar (real halloween shit) I'm doing fine.

I will admit that while physically I'm doing great, I haven't really wrapped my brain around what has happened yet. I don't know when it will sink in or if it ever will (do I want it too?). This whole thing is just completely surreal. It's like I just lost a week. Feeling as normal as I do doesn't help (not that I'm complaining!). The reality is maybe it's just easier for it not to sink in. My diagnosis is a fucking depressing thing and thinking about it too much doesn't do any good or change a thing.

The one thing this has made me very aware of is the importance of being as healthy as possible at all times. While my neurosurgeon's comment about good protoplasm was funny, it is the truth of the matter. I went in to this whole thing doing pretty well. I eat pretty healthy, I am not too skinny or too fat (yes, of course I'd love to lose a few pounds, but I've got bigger fish to fry and yummy food to enjoy!) and I'm pretty active. All that stuff made this latest crapfest a hell of a lot easier to come back from. I say this and I'm not preaching about running or going to the gym, I'm just saying I can't afford to be a couch potato. It is just a matter of time for this kind of shit to happen again and I want to be in decent shape when it happens. So, I'm walking at least 3 miles a day (thanks to Red, my mom and Keith for always keeping me company). Right now, I'm doing it in 1 mile increments, but I don't think it will be too long before I am going for longer stretches. I feel like I could do even more, but am aware that there are some things to be careful off (lifting heavy things, bending over, etc).

So for now, I'm just sort of relaxing and "recovering". I'm thinking I'll be ready to go back to work part time sometime next week. I don't have any doctor appointments (other than stitch removal with a nurse practitioner) until mid October. At that point I'll go back on Herceptin and get another brain scan before the radiation oncologist weighs in on what comes next. It sounds like there will be some kind of radiation in my future to "mop up" anything that got left behind. Brain lesions are tricky because most chemotherapies and targeted therapies (like Herceptin and Tykerb) don't make it through the blood brain barrier. Urgh!

Home Again.

Thanks for all the comments folks. The support is very much appreciated.

They sent me home yesterday around 11am. I was a little worried about coming home, but it has been great! Sleeping in my own bed last night was amazing! It is still really tricky to get comfy, but not having interruptions every couple hours was wonderful. Last night was the first night no one woke me up to take blood between 3-5am, my least favorite interruption, other than the crazy loud code blue announcements followed by lots of running to the elevator. They want you to rest in the hospital, but it is next to impossible!

So I'm home, weaning myself off some of my meds (pain meds, muscle relaxer, steroids) and trying to keep my noshing under control (steroids make me hyper and ready to eat ALL THE TIME). I'm trying to get back into the swing of walking again. It is amazing how easy it is for me to get wiped out. I can do a mile or so walk, but then I need a break.

On a separate note, I must say this whole thing is so surreal- I am having a hard time wrapping my head (no pun intended) around what has happened in the last week. I went from having a great set of scans, to a horrible headache, to a possible brain tumor and an ambulance ride across the Bay Bridge, to brain surgery, to home again in under a week. Wowza! I will say I feel lucky that things went so quickly and that we live so close to UCSF. I am very confident that I got the best care possible (nice that I'm not haunted by "what if's"). I know I said this before, but everyone I dealt with there was so helpful, professional and kind. More on some of the quirkier personalities to come :).

Next steps for me...
First, I've got to get Keith to get some rest, poor guy is completely exhausted. My mom is coming out tomorrow, so that should help. I don't need too much help right now but I can't drive for a bit and I can't lift anything more than 5 lbs.

Second, get in to get my stitches out. I've got to call tomorrow and get an appointment with the surgeon's nurse practitioner for the end of the week.

Third, get brave and wash my head. I need to soak off some of the glue, blood, etc. They told me I could shampoo as of yesterday but I'm not ready!! I may chicken out on this part and just wait until after getting the stitches out. Right now, a hood does a nice comfortable job of hiding my crazy wound (too bad Halloween is so far off, because I've got a GREAT look right now!).

Fourth, tie up some loose ends at work. I've decided that as much as I like working, there is no reason for me to rush back to work. Between follow-up appointments from surgery, the inevitable radiation treatment that will follow, it just makes sense to take some time off.

As if this little tumor issue wasn't enough to worry about, Keith's mom's trip down to the Mayo Clinic happened on Friday. Sounds like the verdict is that Mayo wouldn't change anything about her treatment at this point, and the Duluth doctors are doing the right thing. It's great to know that she's been looked over so thoroughly, and we'll continue to hope for her improvement to continue (albeit slowly).

Report from the front line

So this update is from the horses mouth so to speak (it is Eileen talking). I am in awe that 48 hrs ago I was on the operating table with people sucking cancer out of my brain. So strange I don't even know how to process the thought. I haven't had any bad pain, just can't seem to get comfy. I have a string of sutures from above my left ear down behind the ear and I don't want to put pressure on them, so it is a bit of positional nightmare to get comfy (unless I am thoroughly looped on meds - which happens).

My care here at UCSF has been amazing! I don't have much to bitch about when it comes to the folks here (and normally I'd find stuff to complain about!). I have seen all sorts of folks, neurologists, neurosurgeons, pharmacists, physical therapists, occupational therapists, Neurosurgery ICU nurses (yes, they're that specialized and I think it makes it better!), social workers, folks to help me figure out how to get on disability while I recover, more nurses, patient care advocates, gurney rollers, MRI techs, food delivery folk, and more. Everyone has been pleasant, helpful and professional (even the poor ICU nurses dealing with my "impulsive neighbor" who kept trying to get up and rip out his IVs were gentle and kind -when I was ready to get up and scold him).

More later....gotta rest. Looks like I might be getting outta here over the weekend sometime...

continuing to improve

Eileen was pleased to get rid of a few extra lines yesterday and this morning. She's now much more mobile. It's still a challenge to get comfortable, and I think she's pretty resigned to the discomfort (thankfully, it's not really pain) for a while. We're both still processing the fact that someone was touching her brain only a couple days ago. This is all extremely surreal!

out of icu

Eileen was moved out of icu and is doing pretty well. she's been sitting up most of the day (it's somewhat challenging to find a comfortable position). took a short walk down the hall. talked to the surgeon and he says everything went well.

doing well

I arrived about 615am and Eileen was awake and talking. she had a decent night, though not much sleep. currently she is sitting up in a chair and just brushed her teeth! recovery seems to be on schedule.

quick update

I'm in the room with her. she's looking good. really looped but talking and can move everything. I won't update the blog again until tomorrow. thanks for all the good thoughts.

small update

they're closing. said she's ok. will take about an hour and then off to ICU for recovery. haven't gotten any details.

she's in surgery

hi, Keith here. playing the waiting game. Eileen is in surgery....they said 4-5 hours and we're approaching the halfway point. going in, we both are feeling very confident in the doctors here. the anesthesiologist made a comment that this is the best place in the world to have her surgery done. more as I know....

When a headache turns into brain surgery...

So I went into the ER on Sunday because I was having a terrible headache. It hurt so much it made me whimper it was so bad. After a call to my oncologist, I headed to the ER in Oakland (1 minute from our house), got some drugs, and a CT Scan. The CT Scan showed something suspicious and after consulting with docs here at UCSF I was transferred Sunday night. After a lot of drugs and neurologic tests (follow my finger with your eyes, etc) I finally had an MRI yesterday. The MRI showed a very distinct mass in on the left side of my cerebellum (back of your head). The mass is a little over an inch in diameter. Thankfully it is completely operable (not usually the case), so sometime in the next day or two they will cut open my skull and pop this bugger out! The word is that my headaches will disappear quite quickly and I'll be headed back home after a week or so and should be back feeling 100% after a month (give or take).

I just got finished talking to my oncologist (who I like more each time I see her). She pointed out that given the shittiness of the situation, I once again have the best possible condition, one lone metastasis, that is operable. It is helpful to see the sunnyside, because as usual it could definitely be worse.

One of the surgeons just came in to get me to sign some more paperwork (yes, I'll be donating my tumor to science - although I'm kinda sad not to be able to take it home in a jar) and to mark up the correct side of my head so they don't go cutting open the wrong place!?!? I guess that's a good thing, now if they can just remember to not to leave any tools behind before they sew me back up!

Please send all the positive vibes, prayers, whatever you do my way tomorrow. I've got a great surgeon on the case (he does several of this type of surgery every week). Surgery could be anytime from about 8:30am- who knows...All depends on what other emergent cases come through the doors. Since it is nothing by mouth after midnight, I'm sure hoping they can get me in as early as possible!!

p.s. apologies for any grammatical, spelling or other errors, I blame it on the brain tumor (and the fact that Keith isn't here to do his normal proof reading).

Good news, bad news (really pretty much good news)

I got a call from my oncologist at UCSF today, yeah I said it... she called me!! This never happens. Actually she left a message and I called her back. She was calling to give me the results of my ultrasound (which I already new, since I talked it over with the radiologist on Friday as she was doing it). She said she wanted to call because she was so excited that "they can't see anything!" It must be good news if your oncologist is so excited they have to call you! She also told me my CT scan was clear and that she presented my case to the 'tumor board' today and they decided I'm a good candidate for surgery. Before I have surgery though, I need an MRI (I figured as much). Thankfully I'm still on the trial, so without me doing anything I'm scheduled for an MRI next Monday (at a time that doesn't interfere with work at all- thanks to Irene the trial coordinator). After the MRI, I'll go see a surgeon and talk about what kind of surgery I need. I thought only a lumpectomy was on the table, but it sounds like it might be a mastectomy depending on the MRI. Honestly, this is one of those things where I'll do whatever they tell me is best. I'd rather not have a mastectomy if I can avoid it, but if that is what the experts tell me to do, I will do it. So far the experts have done a good job of keeping me going.

O.K., what is the bad news you ask...My oncologist wants me to stay on the trial until my surgery (more puking, more nausea and more diarrhea, yippee!). I have to say I took the news pretty well, since it was preceded by the good news of the scans. I think it is also easier to accept knowing there is an end in sight now. I'm not saying I won't be sick, but knowing that it is working and knowing that I'm not on it indefinitely make a huge difference psychologically. I'm figuring I have two more cycles now and I'm keeping my eyes on the prize!

and the waiting begins...

I went to work for a bit yesterday and then I hustled off to UCSF to get scanned. First up was my ultrasound. After waiting more than an hour (that office is chronically late, I don't know why I bother to show up on time at this point) they scanned me. It took quite a bit of looking around before it was confirmed by two different radiologists that they cannot find anything to measure! They can see an area where it looks like something was going on, but there's nothing left to see with an ultrasound. I suspect I will need an MRI soon (better resolution).

Then it was off to my CT scan. The particular scan I have been getting looks at my heart as well as the organs in the lower half of my body (Tykerb can cause heart damage in some folks). The problem with this kind of scan is that the contrast has to get pushed into you FAST! This means they need a big gauge IV. It hasn't been a problem in the past, but today there was a new tech...and my veins hide as soon as they sense the tech is nervous. She tried hard, but no luck. They finally called Eli (who I've renamed 'the vein whisperer') from across the street. He came in and got it started in one try (it was the 5th poke for me). It all seemed pretty good at that point, but not so fast; They pushed the contrast in and I knew right away something wasn't right... It turns out that some of the contrast leaked out of my vein. Thankfully enough went in to get the pictures, but I left there with a big bulge on the back of my hand (and three cold packs for my trip home).

It's nice to know the results of the ultrasound already, now I'm just waiting for the results of the CT scan along with the verdict from the tumor board. I will know more on Thursday. I expect there will be more tests before I know for sure what comes next. I'm hoping to at least be done with the trial. This high dose of Tykerb has been ROUGH! There is a lot of puking, lots of nausea followed by a serious case of the trots.

Thanks for all the good thoughts. We're hanging in and hoping for the best.

The news from Duluth is that Keith's mom continues to do "ok", but the neurologist now thinks a trip down to the Mayo Clinic is appropriate. That will happen in a couple more weeks. We're all very curious to learn if Mayo will discover anything different or if we just need to continue to persevere with patience.

Like my new 'school picture'? Maybe I'll sign the back and send them to some of you...

Summer is Officially Over

I have been back to work all week, but today was the first day with kids. I know some folks will say I'm crazy, but it was great to get back to work. I like the kids, I like the routine and so far my classes seem really pleasant (although that could change at anytime!). I'm feeling lucky to be one of those people who likes going to work.

I added a new thing to my anti-nausea arsenal and it seems to provide some real relief. I had a pretty good round really. Sunday was rough, but otherwise I've been feeling pretty good. So good that I considered taking all my pills today, but I was terrified of getting sick on the first day of school so I was an "noncompliant patient" today. My doctor is on board with my noncompliance, so I don't feel too guilty.

My doctor developed a plan for me at my last appointment. I'm going to do this current round and one more. Then I am scheduled to get scanned on 9/9. If the scans still look good, she will take my case to the tumor board. She thinks I might be a good candidate for a lumpectomy. If I get approved for surgery by the tumor board, I'd have a lumpectomy and then I'd go back on Herceptin. As much as I like a plan, I'm well aware that the plan may well change.

Hi, Keith here with a quick update on my mom; She continues to work with speech/swallow therapy in Duluth. My mom and dad are living in a hotel up there and motoring over to the rehab facility daily. She's improving but it's a real slow process. Long grind. There's talk that they might be able to get an acceptably qualified speech therapist in Ashland Wisconsin, which would allow them to get back home to Wakefield and then "commute" up to Ashland (about 50 miles away). My mom is on a particular drug that is supposed to kick-in at some point here....but it can take months to start working. That drug (imuran) would sort of knock some sense into her immune system so it returns to normal. We continue to keep our fingers crossed!

Oh, and we gave Red a bath recently. P-U he needed it!!

Touring...

I haven't posted lately because Keith and I have been busy being tourists in our own backyard. Our niece Hannah came out to visit for a week or so and we had to show her all around. It was nice to have an excuse to do some things we wouldn't normally do (and I managed to avoid going to Fisherman's warf - yeah me!). One of the things that was new to me was the Marine Mammal Center over by Rodeo Beach. It is definitely worth a stop and afterwards you can go for a hike.

Other than having sore feet I'm doing great!! I'm just starting my next round (oof it was tough to choke down those 12 big pills this morning knowing that they're gonna make me sick tomorrow).

So far so good today. I need to really try to imagine going to work this round and see if it is feasible... I think it may doable. I usually end up feeling better if I am out and about doing something.

I stumbled upon this article about the trial I'm on. It was interesting and encouraging enough to give me a push to stick with it for now...

http://bit.ly/rpzmq2

Dr. Moasser is the doctor I saw when I started this. He is a brain! And he picked up the phone right away when I called him with problems. My favorite bit is all the way at the end...

Although complexities of HER2-driven breast cancers have not yet been completely elucidated, these tumors may be less complex and resilient than many other cancers, Moasser says.

“In most solid tumors there are many signaling pathways that go wrong, and many genes that are mutated,” he says. “I think that this cancer is more simplistic, and that HER2 is the critical driver. I think we should be able to cure this cancer if we can shut down HER2, even in advanced cases.”

Keith's mom had a bit of a setback with a clot in her arm, which delayed her release. Other than that she's making slow progress and will get discharged from rehab as soon as they get her clotting numbers dialed in. After discharge she'll still need to be in Duluth for several days each week for speech therapy. The speech therapist works with her on swallowing. She still isn't able to eat, but yesterday she had 10 good swallows (this is way up from 1 or 2 just a week or so ago)!

Nothing but Good News!

Whew. We went to see my oncologist at UCSF today to get the results of all my scans from yesterday and to talk about how things are going. My scans all look good (unremarkable is great!). Still no cancer anywhere except the breast and the lump that used to have a volume of 1.7 cubic centimeters now has a volume of .12 cubic centimeters!! This shit is working! We talked a little about what comes next and at least for now I'm going to stay on the trial for 2 more rounds (a month or so). After that I've got to decide if I can work while taking this crap or not. Hopefully these next two rounds go as easily as the last one. If they don't, then we'll figure it out. My doctor thinks the logical thing to do after the trial is surgery to remove whatever remnants are left. After that it is back on Herceptin with vigilant monitoring. My birthday is coming up and this is a really nice early present!

Look Ma No Hat!

My hair is not long enough and thick enough for me to go hatless. It isn't super thick, but passable and I'm pretty tired of wearing hats at this point.

I'm hoping that the mousey gray color will be replaced with my normal dark brown (with a bit of gray) in a couple months. That's what happened last time anyway.

So far this round of Tykerb has been a little bit easier than the last one (knocking on wood as I type!). Not only have I gotten dressed everyday, but I've even made it out of the house everyday! I've actually been taking fewer anti-nausea meds this time around. I'm not sure how much they do for the nausea and they make me really tired.

Keith got a nice treat today; his mom called and talked to him briefly! They replaced her trach with a metal one that allows her talk a little bit. Her voice was a little weak but he was psyched to hear her after so long. Crossing our fingers that she continues to improve.

Here We Go Again...

Those nine days of no drugs feel so good. For the five days I take the meds, this stuff is way harder than the chemo cocktail I was on, but my recovery is much different than it was with chemo. I feel better as soon as I stop taking the Tykerb, Ketoconozol, Immodium, Zofran and Octreotide (there are a couple others I take when the nausea gets really bad, but those are the ones I have to take). With chemo every round I got a little bit more worn down. This doesn't seem to be having the same effect (knock on wood).
This is my last round before my scans on the 20th. On the 21st, I'll see my oncologist at UCSF to discuss the results of the scans. I also want figure out what my options are. I don't think I can work on this regime. It will be hard to quit the trial if it is working (fingers and toes crossed!), but I'm hoping there are other possibilities that would work well and won't be so damn hard.
During my 9 non-treatment days we got a lot done! We bought a truck! Keith has been talking about getting a truck again for years and we finally just did it. We walked over to the Toyota dealer on July 3rd and told them what we wanted and on July 4th (yeah, I can't believe they were open either!) we picked up a dark grey Toyota Tacoma. We're both excited about the new vehicle, but we didn't expect Red to be so excited. This is a 70lb dog that I have had to hoist into my car on multiple occasions...we get a truck and that fucker jumps right in every time. He LOVES the truck. So, who ever said "dogs love trucks" was definitely right!

Once we got the truck we used it to go bet a bunch of mulch and some stones to use as edging for the front yard. The yard looks much more pulled together. I can't believe we didn't do it years ago. We're joking that the new edging and mulch will make our neighbors think we're getting the house ready to sell! We also took a couple of hikes (local and out at the coast), went up the hill and watched fireworks from three different cities at once (pretty cool). There has also been lots of time for lazing around and enjoying summer!

Keith's mom continues to see some progress. She's working hard at rehab and if things go well could be home by August! I think the idea of being able to finally go home is really getting her excited.

On the Upswing Now

I made it through round three. This one was a little rugged. I was pretty miserable with nausea and headaches the first couple days and then I got a bad case of the runs yesterday. I'm feeling better today, but not 100% yet. I'm hoping to be back up and running this afternoon.

Despite feeling crappy we had a nice visit from my mom. We put her right to work! She did an amazing job weeding, planting and transplanting! We're really lucky to have a gardener who flies in from the east coast! Things are looking much more pulled together here. Now my job is to spread a bunch of mulch to keep the weeds down (all this rain means the weeds will keep coming for a bit here).

Keith is back in Oakland now (got back late Sunday). After he left Duluth, his mom took a turn for the better. She hasn't been on the ventilator for a couple of days now! And she was moved to a rehabilitation section of the hospital. They'll be working to get her back into shape so she do more things for herself.

Made it to Work!

It was a little touch and go this morning but I went to work. I was ridiculously tired but not nauseated and not feeling worried about diarrhea. It worked out fine. These last couple days are pretty easy for me, just show up and proctor exams from here on out. I hate to jinx myself, but I think I'll be able to make it. *knock-on-wood*

Keith is back in town and it's great to see him. It sounds like his mom is hanging in there. She got out of ICU yesterday and now she's in the step-down unit so that's a step in the right direction.

Hanging In

I am happy to report that things have gone well so far today. I had a bout of nausea mid morning, but otherwise things have been good. I haven't been terribly productive and I'm ok with that. I did a couple of errands, took Red for a short walk and napped. That is pretty much the extent of it.

I'm holding out hope that I'm going to work tomorrow morning. If I feel as good tomorrow morning as I did this morning, it won't be a problem at all.

Keith is on his way home after ten days in Duluth. I am pretty darn excited to have him back home!

So Far So Good...

So, day one was uneventful. I am still feeling fine and I even managed to have a productive day! Planted my flower boxes. Bought a bunch of plants because all the plants and garden supplies at the Super CVS here in Oakland were 50% off!! I just couldn't resist. Red and I went for a couple of walks (4 miles worth!). I bottled up some beef broth and made some chicken soup. It's 9pm and I just took my 2nd dose. I'm going to take a bath, take a little extra anti-nausea and go to bed.

I Wanna New Drug...

I went in for my blood draw and doctor's appointment today. It was nice to see my regular UCSF oncologist again. She was all caught up on how things went. I love it when I feel like a doctor has given thought to my case prior to walking in the door. It doesn't happen as often as it should. We started right off talking about the problems I had with nausea. She suggested I try adding a couple more anti-nausea meds to my arsenal. It sounds good to me! So I've got prescriptions for Ativan and Compazine. The interesting (and frustrating) thing is I have both of these in my medicine cabinet from back when I first did chemo. I got them for any "break-through" nausea. I didn't think to ask if I could take them last round when I was struggling. I just assumed that since this is a trial that they wouldn't want me to break with the protocol.

After discussing that she took a look and she thinks the skin on my breast is looking better. I thought maybe I saw the same thing, but since I see it daily it is harder to tell. I looked over all my blood work and that looks good. My counts are continuing to recover post chemo. Some things are still a little out of whack, but nothing crazy.

I am not looking forward to this next round, but I am hopeful that it will go better than the first time. Keep your fingers crossed!

I don't have too much new to report about Keith's mom. Keith is still up in Duluth with her. He will be up there until Sunday. She is still in ICU and she still needs to ventilator periodically. It seems like it is just going to be a long period of recovery for her.

Feelin' Good and Flyin' Solo

I'm pleased to report that all those nasty side effects from Tykerb went away right away! I felt fine the next day when I was at school and things have been good ever since. That makes this regime way more manageable. Now if I can just keep the nausea at bay this next round will be a piece of cake (maybe I went to far with that). My plan is to talk things over with the doctor, maybe I can try a different medication (or perhaps I can just add another medication to the one I was taking?). I don't know, I will see my doc at UCSF on Thursday so we can figure that out. I also think I absolutely have to force myself to eat. Last round nothing sounded palatable and I didn't force the issue. I pretty much existed on peanut butter toast and gatorade. This time around I'm going to choke something down every couple hours so there is always a little something in my gullet. I'm going to cook up some chicken soup and some simple white rice cooked in broth. I'm pretty well convinced that I can keep better handle on nausea, but I guess we'll see next week (fingers crossed).

Keith's mom is still in ICU. She had surgery last Friday and things are healing up well, but recovery is slow. Keith headed up to Duluth last Friday. He was planning on coming home this Thursday, but from the sound of things he's going to stay up there a couple extra days. I can't get over what a shit storm we're living in. Poor Keith is so torn and he just can't be in two places at once. Thankfully I'm doing pretty darn well, but we're definitely paying the tax for living so far from our families!

And Done.

Here's a picture of my constant companion this week as I laid around in bed!

I'm done with Tykerb for 9 days! Interestingly I felt better today than I have since Sunday. I really think a lot of it has to do with eating. I forced myself to eat something even when I felt crappy. I didn't have any real nausea today except a nasty case of car sickness on the way back from UCSF. I'm lucky to have had Keith driving me rather than being stuck on the Muni ready to puke. I managed to hold it together and didn't puke. I got home, took a Zofran (anti-nausea) and snuck in a nap.

I had an interesting trip to UCSF today. I went in for another biopsy, an EKG and a blood draw. The biopsy was a bit of a cluster fuck. The problem is that because I've had a couple of rounds of chemo, what looks like tumor in the ultrasound is really a mix of scar tissue and cancer. This makes it hard to get a good sample of cancer cells. I was hoping to get the same radiologist that I had last time and for a while it sounded like that would happen. Unfortunately she got tied up with a complicated procedure, so I had someone new. In the end they tried to get samples three different times and still didn't get much of a sample. I would be disappointed, but in talking to the doctor I learned that the results of these biopsies are not something I'll ever see. Once the sample is collected it is unlinked from my name and analyzed along with all the others from my cohorts in the trial.

In other news, I read the report from my CT scan last week. All my organs are "unremarkable"! This is a good thing. I was a little worried that being off chemo for six weeks would mean that something might crop up in the mean time. I am very very pleased to be unremarkable!

I am relieved that I'm feeling better today (although my gut sounds like a flushing toilet right now). It makes me confident that I can go ahead and do another round and more effectively control the side effects (regular eating, higher doses of certain drugs, different anti-nausea drugs, etc).

Update on Keith's mom:
She is still in ICU, but her breathing has improved. She is not out of the woods yet, but she is stable for now. The doctors have finally developed a clear outline of their plan of attack in terms of the drugs. There are no guarantees that things will work, but we are more hopeful today!

Eating is Good

So through this whole thing I haven't had any appetite at all (a real strange thing for me!). Today I had the nausea under control enough (with an increase dose of Zofran) that I actually ate. Nothing huge, but I ate more than toast and crackers for the first time since Saturday. Between eating more and that extra Zofran I have kept nausea at bay most of today. I can't say the same for the diarrhea, but that is to be expected.

I think the reason this shit seems so hard is that I wasn't expecting it to be so bad. When I did chemo I was ready for it to be terrible. I read up and got lots of advice on how to deal with side effects. This time around the doctor wasn't even sure I'd need to take off work. I don't know if that's because people have such different reactions or because most people with Stage IV breast cancer aren't working or there are just so few people getting this dose of the drug. Whatever it is, I wasn't prepared and that has made it seem much worse.

On a positive note, it's very satisfying to cross off all the little pictures of pills and shots on my log! I'm more than halfway there on this round, and hopefully we can dial things in a little better the next time.

Keith's mom didn't get worse today so that's great news at this point. He's booking another flight to MN as I type. We're assuming that I'll be in much better shape after a couple days of no pills.

More than Half Way There!

I have passed the half way mark. That is something to celebrate because this shit ain't easy. I think a lot of it is because it is a trial- there is a lot of dialing in the dosing of the different drugs. I'm hanging in there, but it is a struggle. Last night I had the runs. It took Keith two hours to watch a one hour tv show because I was constantly running to the bathroom. I called the doctor and he told me to take Imodium every hour until the diarrhea stopped. I did that for three hours and it finally stopped, whew.

This morning I didn't have any trouble with nausea (thank goodness). Things went along pretty well all day. I just took a lot of naps because the anti-nausea meds make me really tired. By the afternoon I was feeling pretty nauseated and vomited a couple times. The doctor called (just as I finished puking) and told me to wait on my evening dose of Lapatinib and double up on my anti-nausea meds if things don't improve.

Update on Keith's mom:
There have been some ups and downs today, but in the end things are about the same. She is still in ICU. She is really frustrated and we're all frustrated and very worried about her. The doctors are doing their best, but many of her ailments remain a bit of a mystery.

Day One Down

I started the new regime yesterday and things were pretty smooth. I had a bit of nausea and a head ache, but nothing terrible. I even went a little crazy and organized all my pills for this round!

That all changed this morning around 6am. I woke up and was really nauseated and vomited. I went back to bed and waited until 7am and I still felt pretty crappy, so I called the doctor. He told me to take the anti-nausea meds and wait a bit. I did that and at 8am I tried to have some toast and water. I got one bite down and got sick again. Ick! I called the doctor again and he told me to wait a while longer and see. This time I waited two hours and I actually started feeling pretty good. I ate some more toast and took my morning dose of pills. I haven't talked to the doctor again, but I'm hoping he'll have some advice on how to avoid this happening again tomorrow.

The perfect storm:
Keith's mom had a set back today and is back in the ICU. Poor Keith is so torn, I feel terrible. As he was getting news about his mom, I was in the bathroom puking my guts out. What a crappy way to start the day. I know things can always be worse, but jeeze...

I am confident that things will get better. I just need to get my drugs dialed in a bit. I think I just went too long without any anti-nausea stuff. I'll talk it over with the doc later today and see what he recommends.

Epic Day

I'm done! Whew, that was a big day. It started off a little stressfully. I hopped on the BART and once the doors shut they announce that there are 20-30 minute delays. Urgh! That was just what I was trying to avoid. It turned out just fine because we weren't delayed more than 10 minutes and I had enough time to make it to my 8:15 appointment.

After that crazy start, things went really smoothly. Keith was very worried about the biopsy (and you can't blame him based on the last time when I spent a couple hours spurting blood on everyone!) but this one was much easier! My last appointment of the day was a lesson on how to give yourself injections. It was actually kinda fun injecting saline into the little fake belly they had.

I will start the Tykerb on Saturday, but there are some other medications that I am supposed to start tomorrow. The benefit of being on a trial is that the doctors have more of a vested interest in how you're doing (it really should always be this way). So the oncologist will be calling me a couple times a day to check up on me and make sure I'm managing the side effects (mainly the runs, ick!). Nice to know that if I have problems or questions it will be easy to get some help!



With all these pills that need to be taken on a schedule, I'm going to have to figure out a good system (and quick!). I'm good at remembering things once I get in a routine, but it is figuring out a routine that includes taking pills (and doing injections) at work that I need to work on. I'm gonna try setting alarms on my phone, we'll see how that goes... Wish me luck! I'm going to feel like a complete a-hole if I have to tell the doctor that I have the runs because I forgot to take my meds!



Last weekend Keith's old friend Tim came out to Oakland to work on music. They took a break from recording on Saturday and we went for a walk at the coast. I had to post this photo of Red, because he's looking so handsome (and well behaved!).

I'll keep you posted as I move through this first round. Hopefully I can keep the side effects under control and Tykerb does its job!

Update on Keith's mom:
There really isn't much to report here. There hasn't been any improvement despite a change in dosage. She's really getting frustrated and Keith's sister is rallying the troops and trying to organize a second opinion with a specialist at the Mayo Clinic.

Testing Phase One Done

Yesterday I spent the day at UCSF. Wow! The upside of this trial is that I have my own personal "cancer concierge". Her name is Irene and she makes all my appointments, makes sure I know where I'm going and even calls to remind me of my appointments. I can't tell you how nice that is! She has already given me a tentative schedule through the end of June! It is so nice to have a bit of clue about what I can expect. The downside of the trial is that I have to travel 13.5 miles. Now that doesn't sound like much to you non-city folks, but this particular 13.5 miles takes a good 35 minutes (could be an hour in traffic). To top it off parking around there is pricey! I need to try taking public transit. It would take an hour, but I could just relax and think about the money I'm not spending on parking!

Back to my story about yesterday. I started off by signing all the paperwork necessary to get started on the trial. Then I took the UCSF shuttle across town to have a cardiac MRI. It took them a couple tries to find a vein, but they got it in there. Thankfully I'm not claustrophobic, so the MRI doesn't stress me out, in fact it was quite relaxing. I almost fell asleep! After the MRI I took the shuttle back across town, had blood drawn and had my port flushed (has to be done every 4-6 weeks). Last but not least I had an EKG. Assuming I pass all these tests (and everyone is pretty sure that I will), I will head back in to the city next Thursday for more tests.

Next Thursday will be a full day! I'm scheduled for a CT Scan at 8:45, Mammogram & Ultrasound at 9:30, blood draw at 11:20, meeting with the doctor to discuss intricacies of the trial protocol at 1:00, fine-needle aspiration (biopsy) at 1:45 and injection training at 3pm. After all that I'll be ready to start taking the drug (Lapatinib) on Saturday. The basic protocol is that for 5 days, I'll take the lapatinib twice a day, and take lots of drugs to stay ahead of the GI disturbances. Then, I'll be off Lapatinib for 9 days, and the cycle starts again.

I'm anxious to get started, but I'm sure as it gets closer I'll get more nervous.

Keith's mom is still in the hospital. Things are going along "ok" but measurable progress is still a little hard to come by. She's hanging in there as they try to dial in the drugs and wait for some response. The family has been pulling together, taking shifts to be there with her and keep a handle on all the meds and treatments.

Stable(ish)

I picked up the MRI report on my way home today. It isn't bad news, but it isn't great news either. One area has improved (but isn't totally gone) and the other area looks about the same. I haven't confirmed with any doctor, but I think this means that a lumpectomy probably isn't an option. With that in mind I emailed my oncologist at UCSF the report and told her I'd like to pursue the trial. It is late on a Friday afternoon, so I can't imagine I'll hear back from her until Monday, but at least the ball can get rolling. I'm getting a little anxious about not having any drugs on board right now. I know a week or two won't make a lick of difference, but it weighs on me just the same.

Keith is off in Duluth taking care of his mom (and giving his dad and brother a quick break). She now has a firm diagnosis, but isn't responding as quickly to treatment as one might hope. She is however stable and seems to be tolerating the treatments pretty well. My fingers and toes are crossed that things start to look up soon!

**Edit: I just got a response from the doctor. They're on it. They have scheduled me for a couple different tests on Wednesday of next week. I will get more details on Monday.

Done With This Round of Chemo!

I didn't finish all six, but apparently doing 5 of 6 is good enough for everyone. I saw my doc at UCSF yesterday and my local doc today and both agree that I've had enough and one more dose is not going to make or break anything. I'm tired and done with that crap.

Keith and I had an interesting talk with my UCSF oncologist. She (like every oncologist I've seen - that's 3 at this point) doesn't think a mastectomy is a good option. She thinks we need to wait and see what the MRI looks like. If there is next to nothing left, she'd suggest I get a lumpectomy and radiation. If there is measurable disease, then she suggested a trial they're doing at UCSF. They're testing an already approved drug for HER2+ breast cancer to see if it is more effective at higher doses. It is a targeted therapy so it should be easier than chemo, but it still has side effects (GI issues and skin rashes are the most common). I would be highly monitored during the trial, which is intriguing. I love the sciencey aspect of someone looking at the cancer cells prior to treatment and after treatment to see if this drug is working. At least it sounds more satisfying than waiting for months and doing a scan. There is no promise that this trial might cure me, but I will learn whether my particular cancer cells are sensitive to this drug and if the side effects get bad I can always quit.

Today I talked over all that and more with my local oncologist and she is on board. She is concerned about side effects, but she told me that the side effects go away once you stop taking the drug, so I'm not risking too much there. She also told me that she was leaving the practice here. She is taking a job at Kaiser-Permanente and will be working with her husband. I'm sad to see her leave because I trust her but it sounds like a good switch for her. Really, her leaving almost makes it easier to consider the trial. I would get all my care at UCSF while on trial and while I hate the 45 minute trek to San Francisco (vs. 10 minutes to Berkeley) I trust (and like) my doctor over there.

So the plan of surgery is in question. I'm not sure what to hope for. I mean, I'd love for the cancer to be so small that a lumpectomy would work- but if I have surgery, my summer is pretty much shot between surgery and radiation (daily for 4-6 weeks starting 4 weeks after surgery). The idea of having daily appointments for most of the summer makes the trial more tempting. So I guess the take away point is there is an upside to either option. Regardless, the MRI is scheduled for next Thursday and we have to see that before we take another step.

In other news, the doctors in Duluth think Keith's mom has Myesthenia Gravis. From what we've read it is a chronic but generally manageable thing. The good news is that she seems to be doing a little better these days. Today she even managed to eat! She hasn't had anything to eat (except via a feeding tube) for almost two weeks. This is a huge step that gets her a lot closer to getting out of the hospital!

No Go

No Chemo for me today. Between having a nasty little cold and my blood counts being in the crapper it just didn't make sense. I'm getting really anemic (hence the tiredness and the panting when I go upstairs), my platelets are low (no evidence of this yet), my white blood counts are low (probably the reason I came down with this dumb cold). I'm scheduled to go back in on Friday to get blood drawn again. I'm sort of hoping that we can just call it good enough and skip this last round of chemo. Right now it is just wait (rest up) and see.

In other news, after a rugged week or so, Keith's mom seems to be improving! There is even talk of moving her out of the ICU soon. She is in it for a long haul, but we're all happy that things are trending in the right direction. The crazy part is that they still aren't so sure about the underlying cause! There are a couple of possibilities, but her symptoms don't fit either one perfectly. Hmmm.

In search of Dr. House...

Keith's mom has been in the hospital since Saturday with some mysterious symptoms. The doctors just can't seem to figure out what exactly is going on. They've ruled out things like a stroke and Lyme Disease and they're waiting for some more test results, but still no definitive diagnosis. We're really wishing it were like an episode of House and we could fast forward to the part where Dr. House fixes everything. Please send good thoughts her way!

In other news... Keith and I went to see my breast surgeon today. We talked through a couple of scenarios. The next step is for me to get another breast MRI. He wants me to get this a week after my last round of chemo (hopefully that is next week). The scan will give us a very detailed picture of what is left of the cancer in my breast. The results of this scan will determine what kind of surgery my surgeon would recommend. If there is just one spot left, he'd recommend a lumpectomy followed by radiation. If there are two spots left (there were two spots visible in my MRI in January (before chemo)), he'd recommend a mastectomy. I just want to get rid the cancer that is left. I know the recovery from the mastectomy will be harder, but honestly I'm totally ok with that. I'm actually excited to get rid of this crap. Yes, I know there is probably more floating around, but anything I can do to get rid of it is good by me.

My surgeon also spilled the beans that my oncologist is leaving?!?!?! From the sound of it, he wasn't supposed to tell me, so I'll keep my trap shut and pretend to be surprised when she tells me. I don't know how I feel about this. I trust my oncologist, but she isn't the most warm person. The doctor I will be transferred to comes highly recommended and hopefully she is a little more personable, but no matter what change is hard. I'm just feeling happier than ever that I have my trusty second opinion oncologist at UCSF (hopefully she isn't going anywhere anytime soon!).

Wish me luck for chemo next week. At this point I wouldn't be at all surprised if my counts are too low for chemo despite all my bone soup!

Send good vibes up to Duluth for Keith's mom (and her doctors)!

Sorry for the Silence

It's been too long since I wrote one of these- sorry about that. Things have been rolling along here. I had chemo last week and I'm still amazed that my blood counts were good enough. I feel pretty good. I'm definitely fatigued this round, but I'm hanging in. Still managing to get out and go for a walk everyday. I'm looking forward to my last round of this chemo cycle. I know there will be more to come, but the break will be nice.

My doctors all seem to be on the same page about what comes next...surgery and radiation! Apparently they can do the surgery about 3 weeks after my last chemo and after that I'll start radiation. I'm still working out the details, but I expect that the surgeon will recommend a lumpectomy. If I weren't stage IV they would do a double mastectomy, but since the proverbial "horse is out of the barn" they'll skip that and do a quick out-patient lumpectomy. It's a strange thing to wrap your head around, but the fact is; cancer in my breast is the least of my worries. There are micrometastases floating around throughout my body and that's what I worry about. Spending a couple months recovering from a mastectomy is not something I want to do considering I don't know how many months I've got. I'm planning on having lots of months, but you never know with this shit. The lumpectomy should get rid of a lot of what is left and then radiation will hopefully mop up the rest.

This does mean I get to add yet another doctor to my repertoire: a radiation oncologist. Woo Hoo! The bummer is that radiation is a daily thing for 4-6 weeks. I wouldn't mind if it were happening during the school year, but from the looks of things it is going to tie us down for the first part of summer. Not ideal, but there isn't too much to be done about that.

I'll post more as the details become clearer but as it stands, this is pretty much the info we have to go on. As always, there's the possibility that the plan may change. I already have an appointment set to see my 2nd opinion oncologist at UCSF in a couple weeks.

good scan!

Hi, Keith here. E's oncologist is out of town, but we saw her colleague this morning to discuss the results from last week's PET/CT scan. We've had several days of nervous apprehension thinking about the worst case, but hoping for good news. The suspense was really getting to us but, thankfully, once the doctor walked in the door it was a mere seconds before she told us that things are looking good! The previous PET/CT showed some stuff in her chest, but that was from December's pneumonia and it's clear now. Her liver and lymph nodes are clear, and the cancer in her breast has mild uptake (that's a GOOD thing). Whew! It's going in the right direction. With this news, she'll continue with her current chemo cocktail. We'll be seeing her breast surgeon on Friday to get his take on the situation and hopefully get a better idea on how to proceed regarding if/when to have surgery. He usually does a quick ultrasound in the office which is helpful in tracking progress.

Eileen's port redness has returned and it looks to be getting a little worse again, but she says it doesn't really bother her. (I joke that it looks like she has a piece of twizzler stuck to her neck.) The doc checked it this morning and didn't seem too concerned about it at all really, so I guess it just is what it is until it either clears up again or gets bad enough to do something about. It was nice to have someone look at it again though, just to confirm that we needn't worry about it.

Eileen shared with me that she's been freaking out the last few days because her arm pits (read: lymph nodes) have been sore. She was concerned (convinced?) that the pain was an indication that the cancer had gotten another foothold. As it turns out, she realized that the new shirts she bought don't fit right in that area. Could be cancer.....or, just poorly fitting clothes. Argh! See what a mindfuck this is? It's so easy to freak about every little ache and pain! (Hell, I'm even doing it....oh and I swear I get sympathetic chemo side effects.)

Anyway, thanks for playing along. We're looking forward to some better sleep tonight.

Rainy Red

It has been really wet here this week. I am officially tired of the rain! Red and I didn't get out to do as much walking as usual, but when we did he wore his raincoat. Lest you think we've lost our minds...a wet dog means a wet dog bed (even if I towel him off his bed gets damp) and a wet dog bed eventually turns into a mildewy dog bed. Ick! Not what is needed here, so Red wears a raincoat (and I think he looks jaunty)!

Staying the Course For Now

I got the same old chemo cocktail today. When I saw the doctor she recommended that I get a PET/CT to check on things and then we'll have better information before we make a decision about changing treatments. My doctor is concerned about the skin thickening, but was still really impressed at how much better my skin looks overall. The red spots of the skin metastases are almost all gone.

In other news, bone soup is back on my menu. My platelet count was LOW as were a bunch of other things. I have been taking some iron supplements, but it isn't quite enough. I don't know if the soup will do any good, it may just be that my bone marrow is beat up by all the chemo but, I figure it can't hurt. I'm thinking I need to try my hand at making some homemade pho (one of my most favorite comfort foods).

I'm looking forward to taking it slow this week. It looks like it will be raining a lot, so Red and I are going to have to watch the radar and wear our rain coats (yes, Red has a rain coat!).

Change in Treatment?

First things first, the rash over the catheter that runs from my port to the vein is looking better. Turns out it was probably infected after all.

The bigger deal is that it is starting to look like this chemo cocktail isn't working as well as we'd like. Keith and I went in for a visit with my breast surgeon today. It was meant to be a quick check on my rash, but I had noticed some skin thickening on my breast a couple days ago. This was worrisome because the skin had been getting better. So, what it seems like, is that while the visible cancer on the skin appears be almost completely cleared up, the tumor in the breast isn't shrinking much at all. According to the ultra sound the tumor is about the same (maybe slightly smaller), but the skin thickening is a sign that something is going on. The doctor thinks that it is the result of some blockage in the lymphatic system.

As usual, I'm glad to have him on the case. He's got a call into my oncologist to talk to her about what is going on. His take is that it might be time to switch chemos. I'm all for it. While there may well come a time when I'm happy to just have things not growing, right now I want things shrinking!

I'm scheduled for chemo this coming Tuesday. I might get it or I might not. There is no way I'll get a new chemo on Tuesday. It takes time to get that kind of thing approved. I guess I'll just wait and see what my oncologist says on Tuesday. I honestly wouldn't mind another round. I know that probably sounds dumb but, I hate the idea of not having any chemo for several weeks while all the logistics get worked out.

The upside of all this is that I just noticed the change last Wednesday and I just happened to have appointments with the surgeon on Friday and the oncologist on Tuesday, so the ball got rolling really quickly. In addition to that I've already talked about what my next chemo cocktail would be with my oncologist and the specialist at UCSF, so it should be a pretty straight forward decision. I say that now, but who knows...

One thing all this crap has forced me to deal with is uncertainty. Will I need to take Wednesday, Thursday and Friday off to recuperate from chemo? I won't know until Tuesday afternoon. Urgh. I hate that! I'm much more comfortable when I know the plan!

Third Round On Board

My blood counts were good enough that I got my chemo today. Yippee! I saw my oncologist and we chatted about the second opinion and she nodded in agreement. She seemed genuinely disappointed that I didn't have more progress pictures to show her today, but I'll be sure to load up the iPad next round. The drip wasn't ridiculously long today, but it does take some serious time (5+hours).

I was a little nervous going in because the skin over the tube attached to my port is red and irritated. The nurse that accessed me (hooked up to my port to draw blood) didn't seem too worried because "it doesn't look like an infection". My infusion nurse was more worried and thought the doctor might put me on antibiotics. When the doctor came around she told me to put vaseline on it and keep an eye on it. If it isn't better, I am to go see the surgeon who put it in. The good news is that I already have an appointment with him next week, so I'm all set (for once!).

Clean Lungs

I saw the pulmonologist today. I was cranky because she was running late by 45 minutes or so. I know I complain about this a lot, but I just can't get over it. I understand emergencies, but I can't imagine there are this many emergencies. Anyway, my crankiness went away when I finally saw her and she told me my lungs are clean. Whatever showed up on my PET/CT in December is gone. I guess I really did have pneumonia. So after waiting 45 minutes we talked for 5 minutes and I bid her farewell. My pulmonolgist is very nice, but I'm hoping I won't see her for a long time!

Otherwise I'm doing fine. My gullet has finally gotten back to normal (just in time to get fucked up again!). My energy is decent, my hair is almost all gone. I'm actually anxious for the rest to come out because the bits that are left are like little prickers when I put my head on my pillow at night. I don't remember it being like this last time, maybe I just blocked it out. Wearing a hat helps, but I take my hat off in my sleep (maybe I get too hot...).

I'm hustling at work to get things pulled together for next week. I got most things squared away today, but there is more to do!

Second Opinion

Keith and I headed to UCSF Thursday for a second opinion. The doctor we saw specializes in HER2+ breast cancer. We arrived early (traffic was good) and she was running late, so we waited around for quite a while. When she finally came in she took her time with us. She was really quite positive about my prognosis. I believe her words were "not curable, but highly treatable". Apparently my flavor of cancer (HER2+) is generally very receptive to chemo and my particular cancer certainly seems to follow that trend.

She thinks my current regime is good and she agreed that it seems to be working (I'll spare you the photographic evidence). So I'll continue along with treatments and get a scan after 5 or 6 rounds. I never completely recovered from last year's chemo, so there's concern that I won't be able to complete all 6. Regardless, if things look good, then she'd advocate that I consider surgery and radiation to get rid of whatever is left.

It feels good to have another doctor evaluating my case and I'm looking forward to being able to run things by her when I come to the forks in the road.

Otherwise I'm feeling pretty good, some gullet issues are still hanging around, but I think I'm turning the corner. Right now, I'm enjoying a rare Sunday night without work tomorrow!