Livin' the Dream

Starting on Pi Day (that's March 14th for you non-geeks) I'll be going to work part time.  This is something I've been thinking about for awhile, and something Rusty and I have talked about over the past few months.  I'll be working 9 hours a day on Monday, Wednesday, and Friday.  These hours allow me to keep benefits and they would also allow me to be eligible for Family Medical Leave Act (FMLA) time off if I really need to stop working.

It all started when I heard an interview on NPR with a writer, Norah Ephron.  The article and interview can be found here:

http://www.npr.org/templates/story/story.php?storyId=131161208

I don't remember the whole interview (it's been a couple of months since I listened to it), but the part that really got me was toward the end where she was talking about how she and her friends had a discussion about what they wanted for their last meal.  One of those friends later developed throat cancer, and the sad thing was that she could never have her last meal.  She made the obvious point that you should eat that "last meal" all the time.  Don't wait for it.  That really got me thinking and made me realize that I wanted to do this.

I don't really need to take time off, but I want to enjoy my time now because I feel good and I'm healthy.  I don't want to wish I had done it, I want to do it.  My goal is to spend one of those two days per week getting things done around the house that I've always wanted to do (the kind of things that nag at me).  The other day will be for fun.  I envision lots of sewing and knitting, but I'll keep my options open.

Some people at work know what's going on, but some people don't.  My boss asked me what I wanted to tell people, and we'll say that I'm taking time off to deal with a family situation/help out with family stuff.  It's intentionally vague.  I expect the people who know what's happening in my life to understand, but the people who have no idea hopefully won't ask.  I still don't feel comfortable telling everyone at work at this point.

Hopefully more time will mean more blogging.  We'll see :-)

The Mask

"Is this what has to happen to get you to write in your blog?"

I thought about it for a second, and I answered my mom, "Yes!  I'm going to write about this in my blog.  Yes, I promise I'll write about this in my blog."

I was speaking from behind a surgical mask.  About ten or fifteen minutes earlier we arrived Dana Farber and the receptionist asked if I was experiencing any cold or flu symptoms.  There was no way I could hide it.  My voice was incredibly hoarse and my nose was running.

"How did you guess?" I replied.

"Oh, well we ask that you wear this mask while you're here."

Ugh.  How embarrassing.  They gave me this ridiculous surgical mask to wear while everyone else with a cough or a sniffle either lied or waltzed right past the receptionist because she was only asking patients!  Come on.  For every patient there is at least one or two supporters, and the statistical likelihood that I was the only person in that waiting room with a communicable disease was quite low.  Yet I was the only one wearing a stupid mask.  So, there I sat, looking like a SARS patient and grumbling about it the entire time.  When I went to get my vitals taken, they even used a special ear thermometer instead of the one that goes in my mouth.  Cue the eye roll.  I don't handle these things gracefully, in case you didn't know.

As I sat there, fuming, my mom tried to lighten the situation by asking if I would blog about it, and here I am.  A promise is a promise, even if the incident did happen over a month ago.

The whole time I couldn't help but think about how these other cancer patients deal with the real world.  I mean, when they go to the grocery store do they ask the cashier to put on a mask?  (I think I may have said this aloud a couple of times).  I think if you happen to have a depressed immune system, it's your job to make sure you don't catch anything from anyone else.  Ask me how I feel about it when I'm on the other side of the surgical mask.  Gosh I hope I feel the same way so I'm not a hypocrite.

The irony is, I'm pretty sure I got sick at the doctor's office the week before.  The good news is, they've started asking if anyone that arrives with the patient has cold or flu symptoms.  The fantastic news is, I didn't have cold or flu symptoms the last time I went to the doctors office, so I didn't have to wear the stupid surgical mask again.

Head of the Class

The last time I wrote (yes, I realize it was ages ago) I had just learned the results of my CT scan, showing approximately a 30% reduction in the tumors in my liver.  While it was good news, it didn't really sound great to me.  It was definitely a step in the right direction, but my oncologist did admit that the first scan usually shows the most improvement and the results can drop off (sometimes significantly) after that.

Well, the last two months have been great from a personal perspective.  Rusty and I went to Mexico to see a rock band, Umphrey's McGee.  We have lots of pictures.  I'll share a few of my favorites.

The view from our oceanfront balcony.

Mayan ruins at Tulum.  Can you see the lizard?

Swimming with turtles at Akumal beach.

In the pool at the resort.

We also got to see lots of Phish (yay!) and we spent time with our family for each of the holidays.  It makes the cold weather bearable.  Well, so does 80 degree weather in Mexico.

The last two months have also been very good from a healing perspective.  I recently got the results from my last scan, and since my very first scan, the tumor has shrank a total of 55%!!  My doctor called me with the news and she told me that she was very pleased with the results and that it's been a long time since she's seen results as good as this.

I had my most recent follow-up appointment yesterday and I was curious if other patients were doing this well on the trial.  She and the research nurse agreed that I was pretty close to having the best response.  Then she went on to say quite humorously that I was by far the patient she enjoyed the most.  Then we went into a series of "bests."  I told her that I wasn't used to getting second place in anything, so I was going to have to make sure my third scan was even better.  The research nurse started playing along, so she asked if I was able to work throughout the treatment week.  I told her I only took one day to work from home and she agreed I was definitely the most "high functioning" patient they had.  Since my response was so good, the study calls for an extra scan, so I'll be getting one within 30 days instead of the usual 2 months.  I told them I assume this is so they have better pictures for the awards ceremony and we all got a laugh out of that.

It was a good appointment, and I'm definitely happy with my oncologist at Dana Farber and with the research nurse who is so diligent.  They're both awesome.  This month my Temozolomide dosage is being reduced according to the study protocol because my low platelets have been delaying treatment by a week every round.  On one hand, my doctor wasn't happy to be messing with a good thing.  However, the hope is that I'll be able to stay on a 4-week rotation schedule with the newer dosage so the results should be just as good or better.  We shall see.  I've just completed day one, which is the day I stay home because the anti-nausea meds make me feel a little light-headed and "out of it."  I hope that the lower chemo dose will mean less nausea problems this round.

Thanks for reading!

When thirty percent is actually an A

I've been doing the TMZ/ABT-88 phase 2 trial for two months now, and according to the protocol I am due for a scan after every 2 cycles.  Today I went to Dana Farber to get the results of a CT scan that I went for on Friday.

My doctor was very happy to report that the CT scan showed a reduction of approximately 30%.  Now, I'm not used to 30%.  I always got A's in school, but I guess this is a good result.  What's more, the CT can't tell the difference between necrotic tissue and tumor, so it could be even better than that (there could be a lot of dead tissue that is not tumor but still looks like tumor on the scan).  She also said that my first scan showed one of the major blood vessels in my liver as being compressed by a tumor.  That blood vessel is back to normal and is doing much better.  The scan also showed clear lungs and intestines and all that good stuff.

So, it looks like the trial is working.  I've been having trouble with a low platelet count, so my treatment is delayed for another week (this is the second time that's happened).  While that sucks, it's just a week and it's not the end of the world.

There's something sad about this time, though.  On Sunday, November 28 (yesterday), I have an appointment on my calendar and it says "NED".  This marks the day that I ended treatment 2 years ago, which is called the NED date, or "No Evidence of Disease".  It's kind of sad that I didn't even make it 2 years.

I'm sorry that it's taken me so long to post.  I have a relatively new hobby.  If it comes down to blogging or knitting, I'll choose knitting almost every time.  Soon I'll post a picture of my Waiting Room Socks.  I'm making good progress, but there's not as much waiting as I expected!

Dana Farber, Part II

On Monday I went back to Dana Farber to get the meds for my trial.  It's pretty complicated.  I take the PARP drug 2 times a day for 7 days, and I take the chemo drug once per day for 5 days.  Because the dose for chemo is so exact, I have to take 7 pills of the chemo alone just to get the right dose!  I have a boatload of anti-nausea meds that I can take, and some pain medication because my chest has been hurting more (especially while taking deep breaths).

My doctor began our conversation by telling me that the diagnostic CT scan I took a week ago showed that the tumor was bigger than we originally thought from the first CT scan (which was about 6 weeks ago).  The original scan was not as clear as this one, so the discrepancy could be partly due to differences in imaging.  It's also pretty likely that it has grown in the last six weeks.  My doctor still felt comfortable with this course of treatment, but she asked that I let her know if I don't feel a difference within a week.  In that case, we won't wait 2 months to do another scan.  I'm really happy that she suggested it and I didn't even have to ask.  She also told me not to be shy about letting them know if I'm having trouble or if I'm in worse pain.  Not that I would be shy, but it's great to hear them say that.  It really feels like they're partnering with me.  I like her a lot and so far I'm happy with this change.

Yesterday was my first actual day of treatment.  My doctor suggested I not go to work yesterday because I wasn't really sure how I was going to feel.  I listened.  It began at 6:30 AM, when I took an anti-nausea pill, part of the Emend set of pills.  You might remember this from the first time I did chemo (I sure did).  I was supposed to have this to start treatment, but I didn't have the prescription.  I felt pretty sick that first week.  By my second treatment, I had the Emend, and I wrote this post.  Anyway, I started the Emend at 6:30 AM, then a half hour later at 7 AM I took the chemo drug and the PARP drug.  I have to wait an hour before eating.

Later that morning, I felt kind of light-headed and woozy, but not really sick.  In hindsight, I think that was the Emend (the first dose in the set is higher than the rest and this AM I didn't have the woozy feeling).  I went out and got some soup for lunch and then at around 2:30 I started to feel pretty ookey and I had to take a nap.  I had that nauseating feeling until around dinner time.  I had a good dinner and started feeling better.  At 7 PM I took the next dose of the PARP drug, which doesn't give me any noticeable side-effects as far as I can tell.

I woke up this morning and did it all over again.  I didn't go to work because I wanted to get another day to figure out the timing of my symptoms - I didn't want to be stuck at work feeling sick.  Today was definitely better.  The lower dose of Emend is good - I didn't get the light-headed feeling.  I didn't feel sick around 2:30, either.  I lasted until 4:30, when I got really tired and took a nap.  When I woke up, I did feel a little ookey, but nowhere near as bad as I felt yesterday.

So, I think I determined an interesting thing about anti-nausea meds.  They are no bargain.  The side effects of all of them are dizziness and headaches.  Which would you rather have?  I'm not sure!  I definitely felt the difference with the lower dose today.  I think I know what's up with the nausea, too.  It's not part of the study, but I took some pain medication yesterday around noontime, and nausea is one of the side effects.  I didn't take one today and I felt a lot better.  So, I think that mystery is solved, too.

Anyway, I know that's kind of boring but I don't really know what else to say about the treatments.  I suspect days 3-5 will be a lot like today and hopefully 6 and 7 will be even better because there is no chemo.  I do one week on treatment, then 3 weeks off.  As long as my bloodwork comes back okay, I start another course.  One of the problems that these drugs cause is a drop in platelets, so they'll be looking for that when I get my blood drawn.

And, I think that's about it for now.  My appointment was much more efficient on Monday, so I didn't get to make a lot of progress on my "Waiting Socks."  The progress was so immeasurable that I forgot to take a picture.  :-(  These socks are going to take forever!  Maybe that's a good thing.

Dana Farber

Today I met with a doctor at Dana Farber to review my case and discuss medical trials that would be appropriate for my situation.

A lot happened, but I'll try to summarize.  We met with an awesome woman who sounded pretty encouraged about a number of opportunities.  One in particular has shown promise for women with the BRCA mutation, and I plan to participate in it.  This link describes the study:

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01009788

Here's the logic behind the trial:

The BRCA mutation contributes to a cell's inability to inhibit tumor growth, which is why BRCA mutation carriers are so much more likely to get cancer.  The study combines two drugs - a chemotherapy drug (Temozolomide) with a PARP inhibitor (ABT-888).  [PARP stands for poly (ADP-ribose) polymerase.]  The chemotherapy drug destroys a cell's DNA.  The PARP inhibitor prevents the cell from repairing the damage.  The idea is that the cell won't be able to repair the damage, and then it will die.  Since BRCA mutation carriers already have trouble repairing cell damage, this population seems much more likely to benefit from this treatment.  In fact, earlier on in the trial, BRCA mutation carriers and non-carriers were allowed to participate but only BRCA mutation carriers responded to the treatment.  Some did very well, and one patient experienced a complete disappearance of her tumor.

The study had room for one more participant, so I decided to sign the release and join the study.  I had a baseline CT scan today and I expect to start treatment on Monday.  While I wish it were sooner, it's not too far away and I'm pretty excited about it.

I'm sad to be leaving my existing oncologist, but I think this is a really good opportunity for me.

At this point, we still don't know much about my individual prognosis.  The idea is that we have to see how well I respond to treatments.  Hopefully the treatments will stop the growth of the tumor or even shrink it.  I will take a course of treatment until it stops working and then I move on to the next treatment.  This is what the rest of my life will be like, but my new oncologist sounded hopeful that it could last a long time. For this particular study, I'll take the chemotherapy drug and the PARP inhibitor orally for a week, and then I'll have three weeks off.  After two cycles of this, I'll get another CT scan to see if the tumor has responded.

While it's kind of scary to be veering off the standard course of treatment and seeing a new doctor, it feels to me that the standard course of treatment is probably not going to be sufficient.  A week ago I was devastated and now I'm thinking differently and I'm hopeful that this will make a difference.

Oh, and I decided that I'm going to do things a little differently this time.  I want to talk about something in addition to cancer and treatments.  For the past year or so I've been knitting (thanks to Jocelyn).  I'll put some of my projects here.  One thing I'm working on is my "waiting socks".  I started them today when I was in the waiting room at Dana Farber.  I waited an entire toe on two socks!  Actually, it was longer than that.  I waited two toes, then I made a mistake and restarted them both.  So it was pretty much four toes.  But, although I had to wait a long time, it was definitely worth it.  My new oncologist spent TONS of time with me and I'm really happy with her.  Anyway, here is my progress on the new socks...

This Ain't My First Rodeo

Note:  I originally wrote this post on Tuesday, September 7th, but I didn't want to publish it until I had more information to share.

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Mets.  Yes, mets.

About 6-8 weeks ago I started feeling a strange sensation when I breathed deeply.  Not all the time, but if my body was bent in the right spot, it kinda felt like something was bubbling up over my ribs.  My doctor always asks me about new symptoms at my 3 month checkup, but he's told me that I should call him if I have something new that lasts longer than 4 weeks.  At the 4-week mark I wasn't due to see him for another 6-8 weeks, so I called and made an appointment.

He was on vacation, so I saw his nurse practitioner.  After we discussed my symptoms and she examined me, she eased my concerns and told me that it likely wasn't related to my cancer, but she wanted to be on the safe side and ordered a chest X-ray and a CT scan.  This all happened a couple of weeks ago.  When my doctor came back from vacation we met to go over the results.  My rib seemed fine but there were some lesions on my liver that concerned him.  The only way to be sure was to have an ultrasound guided biopsy of the liver lesion.  In hindsight, he wasn't very forthcoming about what was going on - he never really said he was concerned this could be a recurrence but I think he expected us to know that.  He wanted to show us the CT scan but couldn't bring it up on his computer.  If I had seen it, I might have been more concerned.

I did the liver biopsy about a week and a half ago, and got the results Tuesday, the 7th.  It is cancer.  The tumor is approximately 2.5 cm x 4 cm.  He discussed the standard care protocol for this kind of metastasis.  It involves an oral chemotherapy drug called Capecitabine.  I won't lose my hair, and it should be much gentler than the chemo I've had.  I would take it for 14 days, then get a scan to see if it helped.

However, there is another option.  I could participate in a study or get some experimental treatments.  My oncologist doesn't have anything that fits my situation, but he's going to talk to someone at Dana Farber to see if they have anything.  I'm still waiting to hear back from them but I'd like to at least hear about what's available.

It really helped me to write about my thoughts and happenings the last time, and I intend to use the same outlet this time.  Things will have a different feel, though.  I apologize if you are hearing about this for the first time.  It has been a little bit exhausting and I didn't really have it in me to personally call every one.