Annabelle's Big Adventure

Violence Girl

2012-01-11T22:11:00.000-08:00

Yesterday I got the results of the second HE4 test- 37, a few notches down from the last one. This is good! So today I wasn't too nervous waiting on the exam table for the oncologist to arrive with the results of the latest CA125. This is lucky, because as I waited, I read the passage from Alice Bag's autobiography, "Violence Girl", describing her sister's last weeks filled with unbearable pain before dying of cancer... It's a great book, if you can't find it at your local bookshop, go buy it here.

Anyways, I did get my CA125 results, and it went up a little AGAIN. Not thrilled. It went from 31 to 38. The doctor still isn't too concerned and we are once again in wait and see mode. He said that my type of cancer doesn't hang around increasing in small amounts, that by now we would have seen a large spike in the numbers. I would prefer to have zero indication of anything happening, but fine, I'll take these creeping numbers and another 3 month reprieve.

HE4, part 2

2011-10-11T11:39:00.000-07:00

I got back the results of my HE4 test- 40.

This is a multi-step process. The first step is that it is under 151. Check! The next step is that it doesn't increase with serial sampling. If it increases 25% each time, it's a good indicator of disease. If it doesn't, there's a 70% chance of no disease.

I do the next HE4 in 3 months.

HE4

2011-10-05T16:56:00.000-07:00

I'm back from the MD, and as we suspected, there wasn't a whole lot to learn. On the positive side, today's physical exam didn't find anything, so that's good! He had me do a different, relatively new blood test, a biomarker called the human epididymis protein 4 (HE4) that may show more details about what's going on. I'm also doing a few other routine tests coming up to rule other things out. So pretty much it's back to hurry up and wait. My MD doesn't believe in starting treatment based on CA125 results, makes sense to me!

P.S. The epididymis is part of the male reproductive system, I haven't quite figured this one out yet...

31

2011-09-22T08:47:00.000-07:00

CA125 up 2 more in the last month. The nurse mentioned that it was odd that it was increasing in such small increments. This gives me a speck of hope. Oncologist visit on Oct. 5 to learn what's next. Until then, I'm going to try to not think about it. Yeah right.

29

2011-08-23T23:12:00.000-07:00

Well, now we know more- it went up a little more. 29. I don't really know what to make of this. I've made an appointment with my oncologist a month from now. We'll retest again and take it from there...

...26

2011-08-12T10:56:00.000-07:00

A couple of weeks ago I got back the results of my latest CA125 blood test. Up until now I have usually either been 7 or "under 6" but this time it was ...26. I am not worried though since both my abdominal CT scan and physical exam came back absolutely normal. I'm wondering if the increase was caused by the inflammation from a pulled muscle that happened a few days before the blood test. In any case, I am being retested in a few weeks and then we'll know more.

Fortune-ate

2011-02-15T10:03:00.000-08:00

2011-01-18T15:49:00.000-08:00

My oncologist visit has again come and gone, and again I have great CA125 results- 7! It has been 2 1/2 years since chemo ended and I have definitely moved on with my life. This little blog has been very useful to me but I think from now on I will be posting even more infrequently than I already have been. Basically, no news is good news!

I am very grateful.
xoxoxo

Pink

2010-10-18T22:53:00.000-07:00

October is National Breast Cancer Awareness Month, but if you don't already know this, you live under a rock. Everyone has jumped on the pink bandwagon. I thought it was because I had ovarian cancer that it was so annoying, but it seems that I am not the only one. Last week I volunteered with my friend Melinda at a fundraiser for Breast Cancer Action and learned that one of their campaigns is "Think Before You Pink". It asks consumers to not blindly assume that companies with pink products are altruistic, but to question these promotions. I was so relieved to learn I wasn't alone, and I was really happy to support such a group.

The evening was hosted by the Sisters of Perpetual Indulgence

Score one for my optimistic voice!

2010-07-14T22:43:00.000-07:00

I am holding steady with my CA125 at 6 again! This appointment marks 2 years since diagnosis, so now instead of every 3 months I start going twice a year. And I seem to remember reading somewhere that the survival statistics get a lot better after you hit the 2 year mark.

This anniversary has gotten me thinking about the moment when I learned that it was in fact cancer. I was in the prep area waiting for surgery and I asked the nurse if the results from my CA125 were listed on my chart. She pulled it up and told me, "1,500". Until this moment I thought the whole thing was kind of scary and dramatic but definitely not cancer. As soon as she said it, I knew what it meant. I have vague memories of becoming pretty hysterical and demanding to see Ethan who was out in the waiting room.

I can't believe 2 years has already gone by and I am sitting here, happy and healthy. Knock on wood!

Would you please keep it down in there?

2010-07-13T17:53:00.000-07:00

Today I went in for my quarterly blood draw in preparation for tomorrow's check up. The optimistic voice in my head is saying, "All the other exams have gone well, and this one will too." But the pessimistic voice is saying, "The exams always go well until the one that doesn't."

6 again

2010-04-14T22:24:00.000-07:00

My CA125 is 6 once again! The oncologist's assistant says that my particular type of ovarian cancer can be tracked by the CA125 better than some other forms of it. I always take this number with a grain of salt, so this was heartening news.

The Cancer-Fighting Kitchen

2010-03-21T10:45:00.000-07:00

On March 19th I spent the day in Santa Cruz at a life-altering workshop called The Cancer-Fighting Kitchen, put on by Healing Journeys (http://www.healingjourneys.org/the-cancer-fighting-kitchen/). I'd like to share a little of what I learned.

The two speakers were Jeanne Wallace, a nutritionist and Rebecca Katz, an author and chef. They both believe in altering the body's environment to make it a place that cancer cells won't want to hang out in. So in addition to chemotherapy, radiation and other things from the medical world, they add food science into the mix. A lot of this I had already learned in Oct. '08 from my consultation at UCSF's Osher Center, but hearing it again with more current studies to support the theories has given me a big push to try to make some of these changes in my diet.

The first issue addressed by Jeanne is the most difficult one for me: Sugar. I love it in all shapes and forms. You could possibly even call it an addiction. The studies show high blood glucose levels go hand in hand with poor survival rates in cancer patients. Luckily, it's not really the sugar itself, but the spikes in blood sugar levels, so theoretically I can still eat small amounts high glycemic foods (candy, breads, fruit juice, corn, potatoes...) if I combine them with protein, healthy fats, and fiber. A few things she recommends- do the A1c test which shows your blood sugar levels averaged over a few months, avoid deficiencies of Vitamin D and other nutrients and eat foods that can lower blood sugar such as cinnamon, blueberries, garlic, avocado, green tea...

Next up was inflammation, along with another blood test to add to the list- the high sensitivity C Reactive Protein test. Jeanne sited a few studies which show a correlation between high inflammation levels and low survival rates, then explained a few things we can do to help, like increasing our omega-3 and decreasing our omega-6 fats, avoiding blood sugar spikes, and reducing stress. http://www.nutritiondata.com/ lists foods with their glycemic load and inflammation factor, a really good resource. Foods that increase inflammation include corn-fed meats and dairy, sweets, and fried food, ones that decrease it include apples, carrots, leafy greens, olive oil, and dark chocolate.

The last area she covered was about the role of nutrition in the way genes are expressed, a field called Nutrigenomics. This was a bit confusing, but the upshot is that eating certain foods such as cruciferous veggies, brazil nuts and flaxseed can shift the messages that genes send out, causing cancer cells to grow at a slower rate or even die. Other foods, mostly spices, can be inhibitors of NF-kappa beta, something she calls "cancer's master switch." It is activated by carcinogens, viruses, inflammation, chemotherapy and other things and can protect cancer cells from apoptosis (cell death) and promote angiogenesis (the growth of the small blood vessels that feed tumors.) I am highly simplifying this, actually, butchering this, but I want to at least give the general idea.

Complementary to this fairly technical talk was Rebecca Katz's vibrant cooking demonstration. Clearly this woman loves what she does! She made a couple of recipes from her new book, "The Cancer-Fighting Kitchen, Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery" (http://rebeccakatz.com/books/cancer_fighting_kitchen.html). I think she should have added, "and Cancer Prevention". The foods she used fit nicely into the categories we had just learned about from Jeanne, making the whole thing seem more doable in real life.

Here are some tidbits from the 2 hour Q&A we had after lunch:
-Keep meat portions small, around the size of a deck of cards.
-According to research by Charles B. Simone, anti-oxidants in your diet don't interfere with cancer treatment, reduce side effects and increase survival rates.
-Avoid highly processed soy products.
-We've been programmed since childhood to equate sweets with rewards for being good. Reward yourself with a massage or other indulgence instead.
-Tomatoes have great cancer reducing qualities. Plants in the nightshade family are only a problem if you are sensitive or allergic to them.
-Some vegetables are healthier when eaten cooked, not raw.
-Drinking a lot of alcohol can increase blood levels of estrogen.
-Supplements are ok, but nutrients from food is preferable.
-Check your fish oil capsules, if they smell fishy they have oxidized. Nordic Naturals is a reputable company selling fish oil capsules.
-Vitamin D is important for preventing and treating cancer. It's anti-inflammatory and a blood sugar regulator among other things. #25 Hydroxy Vitamin D3 test can check blood levels. Doctors look for levels over 35, but Jeanne likes to see it more in the 60-80 range. 150 is a toxic level.
-Food allergy tests have many false positives and negatives.
-A low to normal thyroid level may be good for cancer patients.
-Some agave nectar may have been cut with high fructose corn syrup. Also agave may be harder on the liver.
-Grade B maple syrup is higher in nutrients than Grade A.
-Conjugated linoleic acid (CLA) is hard to find in other places besides dairy.
-It might be wise for those with ovarian cancer to avoid dairy. Something to do with IGF1. To tell you the truth I was pretty overwhelmed by this point...

After the conference I sat in a local cafe sipping a cup of green tea, with the massive amount of information from the day swirling around my head, while the Archies "Sugar Sugar" played in the background. The skeptic and sugar addict in me doesn't take anyone's word on any of these issues, but Jeanne did support what she presented with research and many studies. And Rebecca's food was delicious. So I'm making this a jumping off point to learn more and figure out what my path should be. I do believe that nutrition plays a huge part in our well being and I am now inspired to take a much closer look.

Ovarian health?

2010-02-26T18:49:00.000-08:00

At a local expensive health food market recently, I was offered a sample of tea. As I was sipping, the guy informed me it was good for ovarian health.

Along the same line, at my general physical the student doctor asked me if I was going to have a pap test, so I told her no, I didn't have a cervix. A few minutes later she asked if my periods were regular.

Oh well...

6!

2010-02-01T21:33:00.000-08:00

My last visit to the oncologist yielded great results- my CA125 was 6! I had a feeling things were going to be good when I pulled up to the Cancer Center and got a prime parking spot and there was a bright rainbow as I walked to my appointment. The doctor showed me a graph of my CA125 results. It begins at the top of the page, started dipping down, plummeted down and now is a straight line heading across the bottom of the page.

Life goes on...

2009-12-15T09:50:00.000-08:00

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"

2009-10-16T08:59:00.000-07:00

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

2009-09-23T17:31:00.000-07:00

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!

2009-09-12T18:01:00.000-07:00

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

2009-07-16T16:08:00.000-07:00

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!

2009-07-01T17:35:00.000-07:00

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

2009-05-20T21:22:00.000-07:00

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

2009-05-19T13:41:00.000-07:00

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

2009-05-09T16:57:00.000-07:00

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

2009-04-27T21:31:00.000-07:00

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)

2009-04-24T20:59:00.000-07:00

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

2009-04-09T09:44:00.000-07:00

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...

2009-04-02T22:01:00.000-07:00

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 !

2009-03-19T09:00:00.000-07:00

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

2009-02-24T20:14:00.000-08:00

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

2009-02-11T22:29:00.000-08:00

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

2009-02-03T17:49:00.000-08:00

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

2009-01-31T11:08:00.000-08:00

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.

2009-01-28T23:12:00.000-08:00

Port removal

2009-01-28T21:11:00.000-08:00

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

2009-01-21T20:15:00.000-08:00

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

2009-01-07T21:17:00.000-08:00

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?

2009-01-02T11:25:00.000-08:00

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!

2009-01-01T10:15:00.000-08:00

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.

Today is Wednesday and I'M NOT DOING CHEMO!

2008-12-17T11:55:00.000-08:00

It's been a whole two weeks since the last treatment. I'm really starting to feel better! The neuropathy is very bothersome, I have some headaches and my concentration/ thinking ability is still shot, but- NO MORE NAUSEA. Nausea is my enemy! I'm the most relieved to not have to deal with that anymore!!

I have been keeping busy with holiday preparations and getting ready for our remodel. A few months ago we got started by having the property boundaries marked and having the designer draw up the as-built plans. Today we have a meeting with him to get started on drawing up the addition. When I first found out I had cancer we put all the plans on hold, but then I realized it was a great project to keep my head a smidgen in reality and it gave me something to dream about. And maybe there's a bit of thinking that we should do the things we want to do, and not put them off...

Dysfunction

2008-12-06T10:00:00.000-08:00

The last few days have been very trying. My last chemo treatment is behind me, but I'm forgetting that I still have tons of it left in my system. I keep thinking I can do everything like normal now, and it is frustrating to not be able to do much of anything. My brain just feels fried. And it's making me mad!!! grrrrr.

uphill/downhill

2008-12-03T08:14:00.000-08:00

Well, this is it. The last one... The last infusion I will ever have to do, or at least I'm hoping for many years before any kind of relapse. At least 5 years would be nice, before I have to deal with this again. But let me repeat, my first choice is to NEVER have to do any more chemo... EVER. I'll be going in for bloodwork every few months, then that will spread out to every 6 months, then once a year. My next appointment is set for Jan. 7.

So, I'm preparing to go in this morning. This involves taking an ativan for anxiety and nausea. Sitting still to keep nausea at bay and hoping to sneak a little breakfast- peppermint tea and a slice of sourdough toast. We'll see how that goes.

Then when I am at the center I quess it will be my usual routine- barf, quickly get my IVs in place, more ativan, then a nice long nap for the rest of the time I'm there. I owe a bit of an apology to some of my dedicated past visitors- Jewelz, Veek, Serafine, Kevin, Amacker, Ethan, Sarah... I don't think I was very good company.

I was talking on the phone with Laura yesterday, we've been scheming up a little Costa Rica trip for when I'm back to "normal". I mentioned that it is all uphill from here. Then I got confused, is it all downhill from here? If it's uphill it sounds like things are going well and things going downhill aren't going well. But it's also that going uphill sounds like more of a battle that you would have to work hard at, and saying it's all downhill from here, means that things will be easier with less obstacles. Or am I making this way more confusing than necessary?

It worked!

2008-11-26T20:26:00.000-08:00

My CA125 numbers went down from 12 to 10! And my blood panel came back with everything normal! I would have danced a little happy dance right there in the office, but I was trying to keep that horrible little anticipatory nausea at bay. I was successful all the way up to the infusion center, where I lost it. Dang. We got the IV's put in and I think I basically slept most of the day. Ethan and Sarah came to hang out towards the end, and we visited with some new friends. She also has ovarian cancer, but for her it has spread quite a bit more. And she is doing the same chemo regimen including with the abdominal port. I am two rounds ahead of her, so it's interesting to compare notes.

So I thank all of you who did whatever version of good luck summoning, especially the crane builders. The doctors sounded optimistic. I asked again what happens next, and it sounds like I'll have an appointment with them one month from this coming Wed. when I do my very last chemotherapy, and they'll check my CA125 numbers again. They're considering opting out of doing a CT scan, because the numbers are so low, and if they don't go up, the chances of finding any tumor is small. At this meeting we'll set the date to take out the port. While taking it out, they'll also be able to do what's called a second look surgery with random biopsies. This will really tell the truth about if there are cancerous cells left. If there is a larger tumor growing, we can send a sample for an assay, but I sincerely believe they won't find anything!

1,000 Cranes

2008-11-25T20:36:00.000-08:00

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The most incredible thing happened this evening! Alice and Kelsey (and Kelsey's mom, Molly) came by with the most amazing surprise for us- 1,000 colorful paper cranes suspended on a piece of black bamboo. They, along with other friends from Sarah's school, had been working on in for a while and just coincidentally happened to bring it over today, just after my post asking everyone to do things to bring good luck!! They hadn't even read that post yet, they just happened to be finished and it was time to bring it over! It is so beautiful, it completely blew me away and I could barely speak. We found a perfect spot for it hanging in the window of the front room.

Here's what it said in the card:

In Japan, they say that a thousand paper cranes will bring a lifetime of good luck. Perhaps it is because the cranes must be made by so many hands, or perhaps it is because so much time and energy is put towards the folding. We all wish you the best of luck in your battle.

And it was signed by about 25 people!

I always feel that when there is synchronicity, I am on the right path. I feel stronger now, heading into my next chemo session, and when I need a happy thought to get me through the day, I'm going to be thinking about those cranes!

A Request

2008-11-24T21:06:00.000-08:00

Today is blood draw day, and I'll get the results at the oncologist meeting tomorrow morning before chemo. I really really really really hope the CA125 numbers either stay the same or hopefully go down. Last time, when it went up from 8 to 12, I got really upset even though I KNOW that it doesn't mean anything. It still sucked. And I don't need things that suck. Right now I only want things that make me feel better.

So, your job is to find a heads-up penny, wear your lucky underwear, cross your fingers (but not on both hands), toss a coin into a wishing well, carry a lucky charm, find a four leaf clover, blow out all your birthday candles with one breath, hang a horse shoe over your door (open end facing up), have a ladybug land on you, kiss the mezuzah, roll a lucky number 7, do things in sets of 8, make a wish at 11:11, kiss the Blarney stone, break a wishbone and get the big half, pray, knock on wood, rub a rabbit's foot (preferably a live one), make a wish on the first star, pet your good luck pig, rub the Buddah's belly, wear red..

Did I miss any?

Happy Thanksgiving!

2008-11-22T22:06:00.000-08:00

So luckily my good week finally kicked in- we had an early Thanksgiving celebration with some of our (super wonderful) local family today! Complete with 20 lb perfectly cooked turkey, gravy, 2 kinds of sweet potatoes, mashed potatoes, brussel sprouts (from the cruciferous family), the traditional "pink stuff", pumpkin pie, apple cake, cheesecake and tons of other yummys. I am stuffed, happy and very thankful!

NOT a good week

2008-11-20T21:05:00.000-08:00

I just barfed my brains out. And have been having pain in my abdomen, some kind of crampy, some stabbing. Not horrible, but it doesn't feel good that's for sure. And my nose is bloody. And I've been a little depressed, so I've been hiding out a bit. And this is supposed to be my good week!

I went to a gynecologic cancer support group today, and was reminded that the particular drug combo I'm doing (and that I'm doing it IP abdominally as well as IV) is supposed to be one of the harshest. Everyone is always so surprised at how well I am handling it.

argh.

One more...

2008-11-16T20:47:00.000-08:00

Coming out of the haze of the last treatment, and it is dawning on me that there is only ONE MORE ROUND TO GO! So, another month and I should be feeling better with all this behind me. Well, except for the abdominal port removal, not exactly sure when that happens. And more blood tests. And lots of finger crossing for no reoccurrences. But I guess I don't need to get ahead of myself.

Right now I'm just happy to have a week off.

Out of it...

2008-11-07T16:17:00.000-08:00

My days thankfully are going by very quickly lately. I've got my line up of things I can take to get rid of the nausea, and some of them make me sleepy. I am all for dozing off and waking up with 4 hours already gone by. Then pretty soon it's time for bed and the next day is already here. Luckily Sarah has a second parent, as I'm not good for much around here except drooling.

3 more infusions left. 1 more bad one, and 2 more medium ones. That seems like a fairly doable amount. Now I'm just hoping that my numbers have time to go back down to those single digits again, this last blood test showed them at 12, up from 8... There is an error margin of + or - 20, which helps make it just about as vague as everything else that's been thrown at me. grrr.

ps. Making me happy lately- my new hats from Louse Bialik. A big box of them! They're made by a survivor of 111b breast cancer, so they are soft and comfy. Here's the contact info:

CJ Hats
Mary Ann Weiss
mare@cjhats.com
www.cjhats.com

I have so many hats (and a pink wig) now, I'm thinking of starting a hat bank after my hair grows back. Take one when you need one, add a few that you don't need any more. Maybe stationed at a local hospital unless they have rules against used clothes. I'll have to look into this.

Round 5, Part 1

2008-11-04T20:39:00.000-08:00

I am dreading tomorrow and the next 2 weeks. I am literally sick to my stomach. I did have a few high points today- Sarah running into the living room shouting, "GUESS WHO'S OUR NEXT PRESIDENT?!!!". Also, my free scoop of Ben & Jerry's (Don't tell my MD...)

I have become comfortably numb

2008-11-02T13:34:00.000-08:00

Well, maybe not comfortably, but I couldn't resist the reference! My latest joy is chemotherapy induced peripheral neuropathy. So the tips of my fingers and toes have partially lost their feeling. Not completely, but I'm sure it will get worse during the next two rounds. I was warned that this would probably happen around the 4th round, so I'm right on schedule. I'm taking vitamin B, which should help, and when chemo is done I'll eventually get back to normal, so I'm not too worried about it.

Bog Person

2008-10-27T20:50:00.000-07:00

I thought I'd share my "bog person" shot from Larnie's birthday party the other night, where we imitated ancient mummified people found in peat bogs. You can see the rest of the shots on flickr.

Lots of no fun with some fun intermixed

2008-10-22T23:39:00.000-07:00

Thanks to a comment left by a certain special somebody on my last post which was about 20 years ago, or so it seems, I'm finally posting. So thanks for that little kick I needed...

Went in today for Round 4, part 2, and it went fine. I took an ativan in the morning, so didn't barf, but still had a small crying meltdown with the nurse. She totally understood. Then they gave me more ativan in the IV and I pretty much slept the entire time. Jewelz came to visit and got a lot done on the scarf she is knitting!

I've been dealing with this nausea which fluctuates between lurking in the background and actually barfing. I now carry a big plastic bag in my backpack just in case. Thankfully, I've been home for the times I would have needed it so far. Oh, except once in the chemo room, waiting for the nurse to start the IV and premeds. I think part of what I'm experiencing is what they call "anticipatory" nausea, more of a mental experience, but the end result is as physical as it gets. I've gotten a few more meds in my anti-nausea arsenal, and I can already tell things are getting better. And the bottom line is that chemo is harsh and no one, no matter what they do can eliminate the side effects completely.

Numbers- I know I said I wouldn't obsess over my tumor marker #s, but since they're still moving in the right direction, I feel this is a cause for at least a minor celebration! Last round my numbers went from 14 down to 9, and this round they went down from 9 to 8 !!! You may all do a small, but rowdy round of tap dancing for me at this point! Ok, you can stop now!! My MD said the goal at the end of chemo was to be in single digits. This puts me in the best possible position moving forward. So now I'm focusing on keeping the numbers from going back up and even better, to keep them creeping downwards.

After a few days dealing with Round 4, part 2, I'm so happy to have a good week coming up! My last good week I did a lot of fun things including going to a live butterfly exhibit with Will and Dot and Sarah, followed by my first time to an icecream shop I've been wanting to go to for 10 years. Also had a great appt. with an MD at an integrated medicine center. He had tons of advice for me, including giving up dairy, sugar and soy COMPLETELY. Not really what I wanted to hear, and now I'm figuring out how I can learn more about this, and try to incorporate it into my life without going totally overboard.

Oh, and I got a new vacuum! You can tell how exiting my life has gotten...

Mail

2008-10-06T18:00:00.000-07:00

This made my day- opening the mailbox, finding a package inside (addressed to me!), containing a book with the hilarious title, "Any Day with Hair is a Good Hair Day." Now, last time I got some books in the mail from an unknown sender they turned out to be from Michelle... How are my detective skills, Michelle?

Movies

2008-10-02T18:10:00.000-07:00

Movies I recommend dealing with cancer issues:

Crazy Sexy Cancer- a documentary by Kris Carr
In the Family- a documentary by Joanna Rudnick
The Breast Cancer Diaries- a documentary by Ann Murray Paige and Linda Pattilo

(I'll add on to this post as I go)

Unhinged

2008-09-26T19:17:00.000-07:00

I'm in the middle of feeling really crappy a few days after my last chemo. I have aches and pains, mostly in my abdomen, but also in my bones and joints and back, everything tastes disgusting, I feel starving and nauseous at the same time (and that really doesn't go well together), I feel like crying all the time and I just generally feel unhinged. Sure I can take stuff to minimize these side effects (and I do), but the bottom line is that I'm just going to have to feel crappy for a few days.

Benign Girl...

2008-09-22T11:45:00.000-07:00

more the engrish!

Reprieve

2008-09-17T10:04:00.000-07:00

I haven't posted for a while since nothing has been happening and I've been feeling good. Then it occurred to me that this is something worthwhile to share- I'M FEELING GOOD!! Last week following chemo wasn't bad at all, and now I've got a week off. Paul and Margaret are coming to visit from L.A. for the weekend and we have some fun things planned including a fire spinning party, a drawing workshop, brunch and a Crank Ensemble show. Can't wait!

numbers and dates

2008-09-09T22:15:00.000-07:00

Tomorrow is round 2, part 2 of chemo. I still haven't bounced back from part 1, so, not really feeling quite ready. A few people have lamented bloggers lack of a calendar, so here's the rundown on my schedule:

9/10- Round 2, part 2
9/24- Round 3, part 1
10/1- Round 3, part 2
10/15- Round 4, part 1
10/22- Round 4, part 2
11/5- Round 5, part 1
11/12- Round 5, part 2
11/26- Round 6, part 1
12/3- Round 6, part 2
(all Wednesdays)

So, part 1 is cisplatin into my abdomen, and taxol into an IV (the hardest week), part 2 is taxol into my abdomen (an easier treatment), then week 3 with no chemo.

The really encouraging thing that happened last week is my CA-125 numbers have dropped significantly!!! Before surgery- 1,500; after surgery- 185; and after the first round of chemo- 14. That's an awfully small looking number compared to 1,500!!! But apparently the numbers can fluctuate during treatment, so I'm going to try hard to not obsess about them.

But, (yay!)

I'm leaking

2008-09-04T00:11:00.000-07:00

Today I went for part 1 of round 2. It was a long day, but everything went well. I had lots of nice distractions, including a good, chatty visit with Serafine and a package from my sister Julie with a neon pink wig inside! But when I got home, I started leaking from the injection area where the chemo was put in through my abdominal port. The stuff dripping out is most likely the heparin, which is used to prevent clogging, and/or the saline solution used to flush the tubing out. So I called the gyn oncology after hours #, and after consulting with one of my doctors let me know that several people have been having the same thing happen, and they typically stop leaking by the morning. I'm finding that it drips out less when I remain horizontal.

It is very upsetting to have these weird things happening to my body.

Unfortunately

2008-09-01T17:06:00.000-07:00

I asked Sarah, "Does this hat look ok?" and she answered, "It kind of makes you look like a muffin!"

Fortunately

2008-08-29T21:32:00.000-07:00

I asked my fortune cookie, will I beat this cancer? And my fortune was:

"You will have a long and healthy life."

hair

2008-08-28T21:14:00.000-07:00

Also yesterday my scalp started feeling very bizarre. Like when you wake up with a spot feeling as if it's bent the wrong way, except my entire head felt that way. And it's definitely starting to come out. I've had super short hair for 10 years, and the thought of being bald doesn't bother me. But when I'm holding a clump of hair after running my hand across my head, it is unnerving and makes me feel like I'm falling apart. On the other hand, it is visual proof that the clear liquid dripping from the IV bag is, in fact, something that is eliminating cancer cells. In the afternoon I met with Dawn in the city to learn about meditation and guided imagery (and snack on chocolate and green juice!) While I was there I went to an incredible hat shop called Alternative Design Studio Hats
and bought 3 hats.

Dear John

2008-08-28T20:23:00.000-07:00

Yesterday I sent a message through the Black Rock City Post Office to be delivered to the Temple:

"To my ovarian cancer cells that chemotherapy will kill during the next 5 months- You are not welcome here. It was just not meant to be..."

From the Jackrabbit Speaks:

The BRC Post Office (Extreme Version) at Tokyo Plaza is initiating the Email-to-Playa Art Program this year. Have your default-world situated loved-ones follow the instructions on:

http://www.brcpostoffice.com/arttoplaya

and they will be able to send a short message transformed to art delivered to their favorite Burning Man participant. The intended BRC citizen will receive it as art (our choice as to which artistic medium!) delivered in person. If we fail to track down the citizen in question, one of our grumpy and/or sexy postal employees will have the art-transformed message at the Tokyo Post Office.

True Nature Reiki

2008-08-25T11:54:00.000-07:00

http://www.truenaturereiki.com/

Rene has been wonderful, even coming to work on me in the hospital! Here's a link to her practice, True Nature Reiki.

A Good Week

2008-08-24T19:24:00.000-07:00

Friday wasn't so bad after all. That's a huge relief! My diaphragm calmed down and I just had a teeny bit of nausea and just felt generally tired and unsettled. And bloated. Yesterday was better and today I felt downright good!

I spent a good part of the day reading the blog of a friend's experience dealing with breast cancer. I've read about 5 months worth, think I'll continue it tomorrow. Now I'm sitting here drooling after a visit from Deborah, who gave me the loveliest and longest foot massage ever!

Bloated idiot

2008-08-21T22:02:00.000-07:00

I have learned that it's true that it takes a few days before the full effects of chemo hit you. Wed. I went in for the treatment, Thurs. I still felt pretty good (which was nice since it was my birthday. We had an impromptu dinner with some friends, a lovely sunset, a humongous chocolate cake and a nummy banana cream pie...) then Fri. hit and I felt horrible. I'm writing this almost a week later and I have successfully blocked most of it out. But I do remember at one point wondering if I really would be able to handle this. The weekend was shot, except for a nice little reality check from Rene, who helped me calm down with some reiki.

Finally felt better on Mon. I went to a yoga session for cancer patients (I really hate how that sounds!) and it was amazing. We did a lot of breathing and guided imagery and a few simple poses and stretching. I felt so nurtured. And on Tues. I went for acupuncture. I'm finally starting to do some of the things that can really help me, instead of wallowing in self-pity.

Wed. went in for part 2 of my first round of chemo. This was supposed to be a short day, but we were still there from 8:30 until 4. This time only Taxol, abdominally, and only about 1/3 dose. Last night I couldn't sleep at all, my heart was pounding and I couldn't take deep breaths because my diaphragm is super sore, probably from the huge bags of fluids getting pumped into my abdomen. I am a bloated idiot! Finally slept around 5 am, for about 3 hours. Today was a good day, but now I can feel it starting to set in. Tomorrow will be fun.

Ok, let's see who gets the bloated idiot reference!

No Prob!

2008-08-13T20:35:00.000-07:00

This first day doing chemo wasn't too bad at all! Here was my day:

7:30- Lab for blood work

8:00- Appt. with doctor to check on my new port. After the placement, he had spoken with Ethan on the phone that they had seen a few spots of cancer about the size of rice grains. So he was able to tell us more- they were actually very, very small, very common, and will be obliterated by the chemo.

9:00- Up to the infusion clinic. The nurse was super nice (and has a dog named Abbie-bell.) It took a while to get in and settled, then they put in the IV and started pumping in anti-nausea and anti-allergy medicine. Then started the Taxol. It was just a plastic bag filled clear fluid hooked onto the IV stand. Didn't feel anything. Then had a bunch of hours chatting with Serafine, Ethan and Sarah, watching a smidge of the Olympics, eating a quesadilla and getting the lay of the land. Next came the Platinol, into my intraperitoneal port (IP for short). Another innocuous bag on the IV stand. Again, didn't feel anything. Really the only thing I was feeling at this point was a bit of wooziness from the anti-allergy stuff. Then a visit from Lego Kevin, an attempt at reading, some snoozing and watched a few episodes of Lost on the laptop (thanks Molitov!)

7:30 pm- Check out

...

2008-08-12T23:40:00.000-07:00

nervous...

What do I want????

2008-08-04T21:52:00.000-07:00

Really, I don't know. It's very confusing. I want to be taken care of and to be left alone at the same time. I want people to feel sorry for me, I want to feel sorry for myself. No, actually, I'm fine. Go away. I told you it's confusing!

I was talking to Allison about this. I told her that this is hard for me because I'm a back of the audience kind of person and all of a sudden I'm on the stage with a big spotlight on me.

One thing I want that I can actually verbalize is that I want to make it to the end of the 6 rounds of chemo. And I might want to quit before then. I've heard a good amount of people don't make it to the end. So I need all of you to be my cheerleaders! Encouragement, threats, bribes... whatever it takes!

(This is what happens when I try writing a post while watching the movie, The Tracey Fragments...)

Phospho-soda

2008-08-04T21:15:00.000-07:00

If anyone ever has to drink this, I truly feel sorry for you.

I have another 5:30 a.m. hospital appointment. This time for a laparoscopy to put the port in my abdomen. The really good thing is that while they're in there they'll look around and if any tumors have grown since the last surgery, they can be removed. So I'll be starting chemo with a clean slate.

And it looks like chemotherapy will start on Aug. 13th. So it looks like I'll have a few days of feeling good before then. Fun in the city?

Jiggety Jig

2008-07-30T23:48:00.000-07:00

We're home!

And I have never had such an amazing homecoming! My sister, Andrea, had popped over earlier today to surprise us with a clean house, food in the fridge, flowers and a card! We walked in and the first thing I saw was the flowers, along with some special soup packets from Switzerland (Fladli- pancake soup we grew up with.) Then I noticed fresh bananas in the fruit bowl, and the surprises kept on coming! The dishwasher had been unloaded, kitchen looks better than it has in a long time, and food in the fridge- new milk, homemade apricot jam, stuff for dinner, my favorite english muffins for breakfast and homemade brownies! And the living room had been organized! This was so unexpected and helpful, it really made our day, and was such a nice ending to our trip.

An aside- I'm counting 5 exclamation points in the above post. Sarah has taken on the job of being my blogging coach. One of the first things she suggested was to limit the amount of exclamation points and to use them only when necessary. Well, this time I just couldn't help myself!

Kailua

2008-07-19T16:33:00.000-07:00

We've spent the last few days in Kailua on the windward side of Oahu visiting Ethan's brother, Daniel. The entire time we've been here there has been a 2" baby gekko hanging out in the house on the corner window screen. It's been very mellow so far, which is just what I need. We've had macadamia nut pancakes at Boots and Kimo, we've hit the thriftstore, taken naps, we had a sushi picnic lunch at He'iea Park overlooking Kaneohe Bay, we went up to the Pali Lookout, with super strong wind gusts blowing us over, had dinner at People's Cafe in Honolulu (including Poi) and breakfast at the Pancake House in Kaneohe followed by garage sailing and smoothies at Lanikai Juice. We had so-so luck at the garage sales. I found a Sounds of the '70's- Punk and New Wave CD and got a free Danish magazine I'll bring to Bodil. Sarah found a necklace for 25 cents.

Hawaii or Bust

2008-07-17T15:46:00.000-07:00

We're off! Being in a house overlooking the ocean with a bunch of friends is just what I need! We'll be with Maria, Cicada, Z'ev, Matt, Larnie, Bodil, Liv, Pat and the birthday boy, Keith. The MD said it was OK to be in the ocean a little, but I should avoid the pool. Hmmm. I guess that's better than nothing.

We've been planning this trip to celebrate Keith's 55th birthday for about a year. It's very strange that it landed in the 2 week window that was available between the follow up appt. with the MD and the time they want me to start chemotherapy. The EXACT time, to the day.

Ooph!

2008-07-16T20:33:00.000-07:00

Went to the 2 week post surgery MD visit today, along with my crack team leader, Ethan. We each had a list of questions a mile long, and I have to say they were very patient with us and answered every one.

Last week we got a copy of the pathology report which answered some of the big questions. Top of the list, was there cancer in the lymph nodes that were enlarged? Big sigh of relief, no there wasn't. Also, they didn't find cancer cells in the "washings" (I think that's abdominal fluid) and the tumor on the omentum was contained to a marble size lump and hadn't spread. Then there were some other areas where it had spread, but the surgeon said they had anticipated that some of the biopsies would show this and since the cells aren't visible as tumors, they'll be taken care of by the chemo. A few things on the report struck me as odd- one of the procedures I had was called an oophorectomy, and even odder- they biopsied my cul-de-sac!

The other thing we worked out at this meeting was the next step. When we get back from Hawaii (that will be another post) I will have a minor surgery to implant a port (yes, a PORT) into my abdomen, probably Aug. 5th, then chemotherapy will start after that. yippee.

Will somebody please explain to me what just happened?

2008-07-13T09:25:00.000-07:00

So, Ethan suggested I start a blog. My first reaction was panic, but then realized that it would be a good way to pass along news to you, and might even be beneficial for me.

I am sitting here at home, with a 4" incision on my belly, still reeling from the surgeon's words after the operation telling me I have ovarian cancer. It happened so fast. On June 16th I went to our family physician asking her to look at a lump I noticed on my left side. She ordered an ultrasound which happened a week and a half later, and I got the results from her within a few days- large cysts on both ovaries. One the size of an orange, the other a grapefruit. She also let me know they weren't the usual fluid filled cysts, they had solid parts as well. She made me an appointment that same day with a doctor specializing in minimally invasive surgery to figure out the next step, and also had me go in for a CT scan. The specialist did another ultrasound exam and decided to make an appointment for me the following Monday the 30th with an oncologist, he said "just in case" it was cancer they wanted to be prepared for any scenario. So at this point it was scary, but still the chance of cancer seemed very remote. My friend Allison and her son accompanied me to this appointment, as Ethan was in L.A. for the memorial of a good friend. Thank goodness they were with me, I started panicking a bit when I saw the harpist playing in the hallway of the medical center! The oncologist I met with let me know that he didn't think laparoscopy (minimally invasive) surgery was the way to go. The CT scan results showed enlarged lymph nodes and some other red flags. He suggested the laparotomy should be scheduled for Thurs. July 3rd, just 3 days away. After much debate we decided to trust the oncologist's call. The surgery went well and I stayed in the hospital for 3 nights, then went home with Nurse Ethan. While I was in the hospital the surgeon visited to let me know it was indeed ovarian cancer and it had spread to a few other places within my abdomen. They had removed my uterus, fallopian tubes, ovaries, omentum, appendix and a few lymph nodes.

Nutshell version:

-June 16th: Showed family MD lump in pelvic area

-June 25th: Ultrasound

-June 27th: Results from ultrasound: large suspicious looking cysts on both ovaries. Appt. with specialist. CT scan

-June 30: Appt. with oncologist

-July 3: Surgery

-July 6: Home