Life goes on...

I missed my 1 year anniversary of being chemo free- December 3rd. I was at a cancer support group that day and mentioned that it had been about a year, but didn't think about it again until a few days later when I realized I had missed it. I attribute this to a couple of things- I have been doing a lot, and I have started to feel back to normal again. I no longer think about cancer 24/7. I don't feel the need to tell everyone I come in contact with about the hell I've experienced. I can make plans for the future again.

And I have been doing a lot! Since I last posted 2 months ago, I went to Central Europe. Ethan's band played in Prague, Wrocław (Poland) and Vienna, then we went to Budapest for a few days to recover from the tour in the thermal baths. Ethan flew home from there and I went on to Ljubljana and Piran (Slovenia), Venice for one night and finally to Switzerland to visit family near Zürich. I was gone for a month. When I returned I jumped right into the holiday season with a fabulous couple of days celebrating Thanksgiving with Ethan's cousins. And this morning we're starting a remodel! Carport demolition first, hearing the hammering makes it real. Even though I'm not thinking that much about cancer anymore, I do constantly think about how lucky I am.

"Terminally Well"

This week I went to a poetry reading at the Beat Museum in San Francisco's North Beach with my friend Rene, who was included in their latest anthology. Another poet used the phrase, "terminally well", and it has stuck with me all week long. This really describes the in-between place where I'm finding myself lately.

Under 6

I went to my oncologist for a checkup today and my tumor marker number (CA125) has dropped from 7 to "under 6". Apparently when it goes below 6, it's no longer a specific number. But it went down, so whatever it is, I'll take it! I'm especially happy because I've been having these bothersome little abdominal pains and a tad bit of nausea here and there. It's really no big deal, except that every time I feel something I get super worried and I was convinced my CA125 was going to be higher this time. I guess I need to work on my positive attitude.

Also, I've been remiss in pointing out that September is National Ovarian Cancer Awareness Month, as well as Gynecologic Cancer Awareness Month. And if I was on top of things I would have posted yesterday that September 22 was Take a Loved One for a Check-up Day...

Fun!

I have been feeling great and having fun! Two notable things from the past few months- I got a new tattoo, and just got back from Burning Man!

The tattoo is by Jeff Rassier at Black Heart in S.F., he did a great job of pulling together all the ideas I threw at him during our first meeting. Lots of personal symbols, but the most important part is the image in the center- insect ovaries. They are my ovary replacements! For some reason I am finding this very comforting. The photo was taken during the first week, the redness has subsided and it looks great!

And Burning Man... What an inspiring, whirlwind, crazy, tiring week! I went a few days early to help build Bat Country, an example of a third-generation Sierpinski tetrahedron. I also helped a group called Feed the Artists, who put together 4 course meals for the people working on Burning Man funded art installations. The rest of the week was spent having coincidences, synchronicity, serendipity and tons of fun!

Phospho-Soda Recall

I saw one of those dumb lawyer commercials the other day, and it was for people who want to file lawsuits against Fleet, the manufacturers of Phospho-Soda, which I had complained about in an earlier post. I had to take it to prep my bowels for surgery, but it took all my willpower to get it down and keep it down. Apparently it has been causing serious kidney damage in some people and as of last December has been recalled. I just knew this stuff was evil!!

You can read more about it on the US Recall News website: http://www.usrecallnews.com/2009/04/fleet-recall-recalled-fleet-phospho-soda-info.html

7 again!

Did a month and 1/2 already go by??! My onco visit today went well- my CA125 is still 7, and he didn't find any lumps or bumps in the pelvic exam. Next appt. in 3 months. The doctor says it's as good as it gets! YaY!

We are off for the long weekend camping at an event called Priceless. I'm glad my appt. was before and not after. Now I can celebrate!

Lucky number 7

Great CA125 test results today! I went down 2, from 9 down to 7 !!! The oncologist checked out the CAT scan report to see about the inflammation and it was basically inconclusive. He did a pelvic exam and didn't find anything, but he wants me back in 1 1/2 months instead of 3, so we can keep a close eye on it. I'm all for being thorough! In the meantime, I have another 1 1/2 months of NOT doing chemo, and I'm really happy about it.

Blood draw today

I'm heading over to Stanford to feed the vampires. I'll get the CA125 test results tomorrow.

I did an amazing job of not thinking about this at all last weekend while floating in a nice cold river in Gold Country! Now it's hitting me.

CAT scan update

I forgot to give the update on the follow-up... The scan didn't show any liver cancer! Just as I suspected, but it was a relief nevertheless. The liver doc did mention he saw some inflammation in my lower abdomen, and recommends bringing it up with the oncologist. I'll be seeing him on May 20th, so I'll ask him to take a look at the scan. We'll also be looking at my CA125 numbers for the first time since chemo ended. I've been having weird twinges and aches in my lower abdomen, so I'm sure hoping that everything is ok!

Living Strong, Living Well

Today I went for my first workout with Living Strong, Living Well, a free program through Stanford and the YMCA. (http://cancer.stanford.edu/patient_care/amenities/livingStrongLivingWell.html) We get a personal trainer, two classes a week AND we can take any of the other classes offered- yoga, swimming, etc.

Also, Laura came over for dinner tonight. We made two recipes from my new book, "The Inflammation Free Diet Plan"- Asian Broccoli and Ginger Salad, and Fish with Spicy Tomato Sauce. Both were incredible. I feel so healthy today! (Thanks for the book recommendation, Veek!)

Guess I need to process a bit more... (Part 2)

Yesterday I went for a CT scan of my abdomen at the request of my liver doctor. For those of you who don't know, I have chronic hepatitis C. It has never given me a problem, but I need to keep tabs on it with yearly check ups. My last two blood tests done during chemo showed my liver function numbers were off, and so the CT was ordered to check for liver cancer. Just in case...

When I arrived I had to fill out a form which talked about putting in an IV, and all of a sudden I had a total emotional meltdown. I think it was a combination of a few things. IVs remind me of chemo... Chemo is yucky. Another part of it is that the last time I went for a CT they found ovarian cancer and the doctors had also said they were doing the CT just to rule it out. I really fell apart! I'll get the results of the scan next week.

Oh, the old gray mare, she ain't what she used to be

My hair has now grown back to about the length it was when it fell out, but it's growing in with a very different texture- very soft with distinct waves that weren't there before. And much grayer!

Guess I need to process a bit more...

Yesterday I went to visit my dad in the hospital. The night before he had some kind of episode where he woke up disoriented so they kept him to do a variety of tests. When I walked into the ward, I had a sudden and very strong emotional reaction to being there. Even though it was a completely different hospital, it just really reminded me of when I was in for my laparotomy, and finding out about the cancer. I had to stop for a moment to breath deeply to stop the panicky feeling from taking over. Didn't realize this stuff was so close to the surface...

! Que Rico !

Costa Rica was insanely fun! Laura and I got back Thursday night, me with a backpack covered in honey and Guaro (sorry Larnie and Bodil), and I'm just starting to feel adjusted to "real" life.

Most of our trip was spent on the Caribbean coast near Panama, a small string of towns including Puerto Viejo, Playa Cocles, Punta Uva and Manzanillo. We stayed at La Costa de Papito, an amazing place in the jungle, but just across from the beach. We spent lots of time avoiding potholes with our bikes, eating lots of fish, drinking lots of batidos, swimming and relaxing. We also did a canopy tour including ziplines, and went to the botanical garden. There were torrential rains, but we didn't let that stop us!

We also visited a small indiginous community of Bribri indians called Yorkin. They have recently lost a chunk of their village, most importantly their medical center and a bridge which links many families with the main area. We saw kids going home from school walking through the river, waist high, and it will only get worse when the rainy season hits. They need a bridge! If anyone has any ideas or connections to companies needing to make donations please let us know!

The other highlight of this trip was white water rafting on the Pacuare river near Turrealba, a mountain town. Not only did we go rafting, Laura and I were in the front of the raft! And it was class 3-4 rapids! We sort of got bamboozled into it by a sneaky tour guide who told us it was really easy, and when Laura asked if anyone ever fell into the river he said only about 1 person every 10 trips. Well, 2 people in our raft fell out, along with about 10 other people from the other rafts. Laura and I got tossed around quite a bit, but managed to stay in. Needless to say, we were quite impressed with ourselves. And it was one of the funnest things I've ever done!

One of the best parts about this trip, besides all that, was NOT thinking about cancer. I don't see anything wrong with escapism. In fact, I HIGHLY recommend it! Now that I'm back home, I'm busy perusing the internet dreaming about whatever my next trip might be. If you want to see the rest of my photos, you can find them here. Best way to skim through them is by making the thumbnails bigger with the toggle in the right hand corner. Enjoy!

Bucket List

Well, I haven't actually made one, but if I had, going to Costa Rica would be on it. And I'd be able to cross it off the list after this Thursday when our plane lands in San Jose. Yes! I'm heading to Costa Rica with my friend Laura! The day after tomorrow! We are going to be mainly on the Caribbean coast down by Panama, and we'll do some side trips from there. I'm not a super adventurous traveler, so this is definitely pushing my boundaries, but I think that may be part of why I'm doing it to begin with. Cancer certainly has shifted my perspective. I used to feel almost like I'd be here forever, but now I'm setting my sights on making it to the 5 year mark. And I'm one of the worst procrastinators I know! So there are a lot of things I've always wanted to do, have been meaning to do, etc. and now I know that now is the time to do them.

Post-op

Today I went for my post-op appointment with the oncologist and got news that may not necessarily be good news, but at least it wasn't bad news- the pathology report from the washings from my abdomen didn't show any cancer cells. This doesn't mean there isn't any cancer, but at least it didn't show that there IS cancer! The plan now is to go back in 3 months and to monitor with blood tests and pelvic exams. My doctor says my situation is "as optimal as it gets." So I remain cautiously optimistic!

Peritoneal Implanted Port

Here's a photo I foundonline of the type of
port I had. I wanted to ask the doctor if I could keep the one they took out, but didn't
realize I'd be basically unconscious...

amnesia

2 days after the port removal and I'm already feeling better. The first day I took the heavy pain killers, the next I switched to 2 ibuprofen and today I cut that in half. They were able to go in through one of the existing incisions, which means less scarring. And they used "conscious sedation", which means less anesthesia and easier recovery. Afterward I commented to the nurse that it was more like being knocked out and she let me know that it causes amnesia, so I was basically awake and able to talk, but then I'm not able to remember anything. That kind of freaked me out. I wonder what I said in there? Or maybe I don't want to know.

My follow up appointment is in 2 weeks. Then I'll know more about how often I'll be going in for blood tests and various scans.

Port removal

Tomorrow I go for a minor outpatient surgery to have the abdominal port removed. My dad said that the last time I was in the hospital to have a port removed was in September, 1993 (when Sarah was born!) My friend Laura had another good one. She said I'm being deported...

I had a choice of a more invasive procedure which would give them a chance to use a scope to do what they call a "second look", or I could do an easier procedure where they use the port to fill my abdomen with fluid, then withdraw the fluid to check it for cancer cells. I chose the latter. At first I thought it would be nice for them to go in and actually look around, then I would be assured that the cancer was gone. But so soon after surgical removal of the tumors followed by chemotherapy, there would more likely be microscopic bits of cancer rather than tumors if there was anything left. They would do biopsies, but this wouldn't guarantee anything. The second look wouldn't change the fact that I may have a recurrence at some point.

This was another difficult decision to make. Nothing seems clear cut anymore, just educated guesses... I'm just trying doing the best I can, and trying to keep my spirits high. Which just might be the best medicine of all.

Me & Britney

The other day I was in the city having a great lunch at Weird Fish with my friend Jennifer. Afterward we were walking down the street and a man shouted, "Hey, aren't you Britney Spears?!" I'm happy to say, I'm NOT Britney Spears and I'm also happy to say that my hair is starting to grow back!

A step in the right direction

I saw my oncologist today. While I didn't learn much about what life after chemo will hold, I did learn a few things. A) I will be having the port removed sometime this month, not sure when; B) my CA125 is down to ... 9 !!! When I started chemotherapy the goal was to be in the single digits in order to be in the category of people with the best odds at a good outcome. So I'm just glad that my CA125 wasn't 10. Even though I know these numbers are not exact, I don't think I would have the same feeling of elation. And C) I asked the doctor what kind of outcome I could expect and he replied that with stage 3b, grade 3, optimal debulking and having gone through the abdominal and IV chemo I could expect a greater than 50-60% chance of total cure. wow. That is actually WAY better than I imagined!!! I am feeling so hopeful right now! yay!

Fungus?

It's funny, I posted yesterday morning about wanting to learn more about what I can be doing to keep the cancer away, and that afternoon I was chatting with a neighbor and she started talking about her daughter's cancer. She told me about an Italian doctor who has a sodium bicarbonate cancer cure, and that all cancers are actually a fungus. So I went home and looked him up and found predominately sites that applauded him. But then found a site that pointed out things like that tumors are usually sent to pathologists, and they would know if it was a fungus. And that the pathologists aren't being paid by the pharmaceutical companies, they are paid the same no matter what label they put on the thing they are studying... Made sense to me. Then there were some links from that page to others that showed this guy had been in jail for fraud and patients of his had died from his treatments... It's just so hard to know who to trust! Maybe it's just a big conspiracy. Or maybe he's a quack. Or maybe chemotherapy is a conspiracy and my oncologist is a quack. Who knows.

2009!

Reflecting on 2008, I'm realizing that half of the year was gobbled up by cancer. One thing I'm grateful for though, is that it went by super fast! And I'm really happy that I was done with my treatment before the holiday season hit. I'm able to start off 2009 with a clean slate, and feeling good. I only have a few lingering side effects, but considering it's only been four weeks since the last chemo, that's really not bad at all! And technically, two of those weeks were part of the chemo cycle. But who's counting...

I even did a bit of traveling. Granted, we just went to L.A., but after seeing mostly my living room for the last four months, this felt like a big deal! It was so nice to catch up with some old friends and family. And just being in a different environment was energizing.

Now we're back home again and I'm going to try to keep the momentum going. Time to figure out how to move forward mentally and physically. Supplements, exercise, diet, stress reduction, etc. It feels a bit overwhelming, especially because if you talked to 10 "experts" you will get 10 completely different opinions! Right now since I had a good response to chemotherapy, I'm finding myself leaning towards the middle of the road. If my situation changes I might get more experimental, but for now I'm sticking with things that are proven to be safe and effective, and especially things that are common sense such as exercising and eating more vegetables.

So, at the moment I'm feeling quite optimistic about 2009. Nothing like a life threatening disease to shake you out of complacency and make you pay more attention to the things that really matter. I'm not going to say I'm happy this happened to me, but I will try to make the best out of the situation.