Up Next?

Up next didn't end up being a scan, ca125 or more chemotherapy...  I got a call from my husband letting me know of a last minute work trip, and I got to tag along!  Within 3 days we were on the plane to Lisbon where we stayed for a week.  Followed by a week in Paris.  Every other November in Paris is the Month of Photography, so I spent as much time as I could in the galleries.  My energy was lower than usual but I didn't let that stop me and I had an amazing time!

Now we're back.  The icing on the cake...  2 months after radiation I just did my first ca125 and it came back this morning-  5  !!  I am feeling tremendously lucky at the moment.

Next...

10 radiation treatments done in a couple of weeks.  Lots of back and forth to the city, some side effects- a little nausea, a little fatigue and a general lack of interest in food.  Now a week has gone by and these are starting to let up.  And I get another "vacation."  3 more weeks until the next oncologist appointment.  Up next?  Probably another scan, ca125 and possibly more chemotherapy.

radiation

Had my first radiation treatment this afternoon.  Felt a little nauseous a while later, maybe nerves...  At an earlier appointment they did a simulation where they lined me up with the machine and gave me 4 small dot tattoos.  Today they used the dots to position me and did a dry run, followed by the treatment which took about 10 minutes.

Oh, and hey!  I forgot to mention...  2 weeks ago my ca125 was

!!!  8  !!! 

Unexpected change of plans!

A major shift in plans happened at today's chemo appointment.  My platelet count took a nose dive, so no chemo for me today.  Radiation will start on Oct 1st for 2 weeks, so we'll give my body a break to bring all my blood numbers back up.  Red cells, white cells and platelets had all dipped very low.  Radiation will be followed by a month and a half or so break, then a PET scan to see where I'm at.  Probably chemo will start back up at that point, but who knows...

It feels very surreal.  My brain hasn't caught up with the news.  It's telling me I should be feeling miserable right about now, but no, I'm already back at home and feeling great!  It also feels a little scary, like if I'm not feeling crappy then I'm not going to kick this cancer.  But my oncologist reassured me that the chemo was working so the tumors are smaller and this is a good time to do the radiation, and it won't effect my outcome negatively.  I'm definitely going to enjoy this small reprieve! 

Catching up

A lot has happened in the month since I last posted.  I had a port (yes, they had a good laugh in the OR) inserted in my chest with a catheter going into my jugular.  Best part about this day was Melanie.  She was so kind to drive me, keep me company and massage my feet!  The rest of this week involved a total mind/body meltdown, with just about every side effect known to mankind.  Week 1 of each round is a double dose- Carboplatin and Taxol together.  This and recovering from a minor surgery pushed me over the edge.  I was seriously ready to give up but luckily the following 2 weeks were much much better.  An irregular heartbeat and my hair falling out were the main side effects.  Highlights of these 2 weeks were a birthday massage with Sar, my sister returning from Europe and a trip to Pier 24 my absolute fave photo gallery.

Round 2 started off with a visit with my oncologist where they did a ca125 blood test.  It went from 65 down to 31.  Not bad for only 3 weeks doing chemo!  The first week of round 2 was pretty crappy but nothing even close to the last time I did the carbo/taxol combo.  Again followed by a much easier week.  Knowing this pattern makes it easier to get through the more difficult times.

Last week I went to UCSF for a consultation with a radiation oncologist.  He had a different approach than the doctor at Stanford.  He is recommending we use radiation to eliminate the tumors sooner rather than later, and keep doing the chemo to mop up any remaining cancerous cells.  This would involve 2 weeks of treatment.  I'm waiting to hear back from them, but my guess is that this will start in the next few weeks.

One of my seriously low points was losing one of our cancer support group members, Liz Esterly.  I've been going sporadically since I was first diagnosed in 2008.   Liz was one of the rocks of our group.  Always there, always cursing, saying exactly what was on her mind, she kept us laughing and was 100% there for anyone needing support or a hug.  The idea of her not existing is a very difficult concept for me to fathom...

#1 of 18

Yesterday was chemo #1 of 18.  17 to go!  I don't feel too crappy at this point.  The infusion center was nice and comfy and the nurses were super nice.  One IV was placed, the only one, since I am having the port put in tomorrow morning.  I got some good napping done thanks to the anti-allergy meds, with Ethan and Sarah's laughter floating in and around.  The photo here shows the view outside, looking onto the salt flats. 

Plan A

We met with my oncologist yesterday afternoon and now have a plan of action.  On Wed. Aug. 6th I'll be starting 18 weeks of chemo.  Carboplatin and Taxol, similar to 6 years ago since I was obviously responsive before.  The standard treatment is 6 cycles of 3 weeks each (18 weeks total), first week one dose chemo and two weeks off.  Last time for each cycle I did two doses during the first week, one dose in the second week then had the third week off.  This time 18 weeks, one dose each week, no weeks off...  It's an aggressive approach called dose-dense.

No surgery, but maybe radiation after the chemo.  There's still some confusion about this, and my doc is recommending we get a second opinion from a radiology specialist at UCSF.  

First stop, install a port in my chest.  This is where they'll insert IVs and do blood draws.  Much easier than 30+ needle jabs!

Dyslexic Radiologist

The PET scan on the 18th was uneventful- drink a jug of stuff similar to oobleck, followed by an I.V. dose of Lasix to stimulate my kidneys and radioactive sugar which came in a creepy looking metal tube, and then sit as still as possible for about 45 minutes.  After the scan however, I ended up taking a small side trip to the ER...  After getting up off the table, I felt a bit queasy.  I attributed this to not having eaten since the night before, and it was almost 5pm.  So I got a bite to eat, but as I sat on the bench outside of the hospital, I felt worse and worse and suddenly felt everything going dim.  A woman close by helped me put my head down and reminded me to breath deeply, and a nurse passing by called for help.  Unfortunately she called in an incorrect code and an entire emergency crew came running out.  About 15 people with machines, crash cart, gurney, etc...  I was starting to come out of it and was totally embarrassed.  I let them know I didn't need to go to the ER, but they strongly advised that I go get fully checked so off I went. 

Last Thursday I had an appointment with a radiation oncologist.  She went over the PET results and some of the treatment options.  The good news is that the recurrence seems to be only the 2 spots that we had seen in the CT and hasn't spread all over the abdomen or outside of it.  She also noted that the lymph node involved is on the right side, not the left like they had put in the CT report.  Doh. 

So now I'm waiting again until the appointment with my oncologist this Wednesday.  He'll have spoken with the radiation and chemotherapy teams and I'll get to see what's in store for me.  I'm feeling pretty impatient, but I'm semi-successfully trying to enjoy myself in the meantime.  

Anatomy lesson

Unfortunately I'm dusting off this old blog since it seems that after 6 years I am having a recurrence.  To sum it up, my ca125 went from single digits at the end of 2013 to a series of rising results starting in May.  35 to 41 to 49 to 75 during the following two months.  July 2nd I did a CT scan which showed 2 or 3 growths. After getting these results over the phone the next day, I spent the week in semi-panic mode.  I should know better and not try to investigate things like this on the internet!  

After my appt. Wed. the 9th with the oncologist I felt calmer.  The CT showed two growths, one in a lymph node, sort of a pencil shape, and the other between my liver and kidney, marble shaped.  These aren't in the same area of the abdomen as my initial occurrence, but in the retroperitoneal space.  I am still having trouble figuring out exactly where all of these various spaces are.  Up until now, I didn't know the abdomen was divided into multiple areas.

Because I tend to go to the catastrophic, I asked the oncologist for a frame of reference and he said that we caught it early and as far as they can tell, it's localized.  He was very optimistic that we could treat this successfully.  Treatments he brought up include surgery, IORT (radiation done during surgery), general radiation and chemotherapy.  Looks like the chemo is certain, the earlier part will be determined by further scanning.  I'll be having a PET scan this Friday which can show active cancer in greater detail.  If there are lots of smaller bits floating around they won't do surgery.  

Emotionally, I'm on the rollercoaster, ranging from denial to gravedigging and all the areas between.  I'll probably feel more stable once we have a more specific plan.

More movement, wrong direction

It's been a while again since I've last posted.  That's good!  At the end of 2013 CA125 was 12 so we went back to checkups every 6 months.  It seemed like a long time, but honestly I didn't think about cancer too much at all.  Last week the blood test on May 2nd showed the numbers up to 35, we retested on May 7th, up a bit more to 41.  The plan is to retest again in 4 weeks.  My onc is still saying he doesn't think it's ovarian cancer, but it's hard to not worry...