"When an affliction happens to you, you either let it defeat you, or you defeat it.." - Rosalind Russell

December 27, 2010

When Life Gives You Lemons...

You say fuck the lemons and bail...


Oh yeah! I just returned from 8 days in Hawaii! I decided that I needed to go on a much needed vacation. Sun, surfing, snorkeling, friends... Exactly what I needed. Except now I am back. Dreary, raining, gloomy Seattle. But at least I got my boost of positive energy needed to start the year off right.

Here's to a good 2011! Of course things haven't been going as well as planned, but I guess that's my life. I'm so spontaneous that I constantly surprise myself :)





More on hair loss and chemo


Understanding the Impact of Hair Loss in Cancer Patients:
For some patients, hair loss is the thing they dread most about cancer treatment. But caregivers are often much more worried about nausea and fatigue and pain, and they don't understand those feelings 
Hair loss represents one more thing cancer rips away from a woman, adding to a long list that includes health and body parts, the ability to work or the ability to have children. 
Cancer patients often describe losing their hair as feeling like they're walking around with no skin; they feel raw, exposed, and powerless
Cancer patients describe looking in the mirror and feeling like they're staring at a stranger. What could be more disorienting than not recognizing yourself?

This is an interesting approach: Of course something else that was never offered to me :(

In the Works: Cooling caps tested to help cancer patients keep hair - latimes.com


Surgery and then...

Wow. I just realized that I missed a month.

I went to my gyn onc appointment and had a quick exam. Everything had been healing well and I was only having a little bladder pain during the exam. She then discussed what she found in surgery. My tumor was, of-course- unusual. Again another reason why my outcome is completely unpredictable. The tumor itself was lightly attached to my bladder and so she didn't have to removed much bladder tissue and muscle. It was also still encapsulated- meaning that the malignant tissue was completely enclosed in normal tissue- something that was completely unexpected. Because of this all fluid washes and other biopsies were negative. Altogether the surgery went very well. Some of the malignant tissue was sent to pathology for future testing.

We then talked about the next step. I had a lot to say and a ton of questions after attending the OC Symposium a few months ago- mainly on new treatments and monitoring measures. After all my reservations about chemotherapy, we agreed that it would be the best option. Why did I change my mind? People may think it's a silly reason, but the new drugs wouldn't cause me to lose my hair. This is a little-talked about concern in cancer research, but really should be addressed. Hair is everything. I'm not one to always care about my appearance- evident by passing on makeup, nice clothes, etc- but losing my hair was just an experience that I don't want to repeat. It's so weird being bald with no eyebrows or lashes. I didn't feel like a woman- more like an undesirable alien life form. I know that this goes against previous posts and the title of this blog, but I don't care. It was ok the first time but now...

The chemo drugs that we discussed were using carboplatin again, with possibly Doxorubicin or Avastin. However, there are many factors that will determine which drug to use. To start, it is unclear whether this tumor was considered platinum drug resistant. Drug-resistance is defined as whether there is a relapse-free interval longer than 6 months. Considering that my tumor was undiscovered until last summer & possibly felt on follow-up examinations prior to that, my interval is unclear. Therefore it's hard to tell whether my prolonged Carboplatin therapy was actually effective.

As a side note: my doctor also mentioned that the bladder area had received significantly less radiation than the rest of my abdomen. Most of the beams were focused on my para-aortic nodes, because this was were the cancer had spread. All of this means that radiation may have been effective because there was no evidence of cancer in that area.

The tissue that was sent to pathology, was apparently being tested for drug sensitivity. I provided a link an article about this on my 11/19/10 post. This is a new method of treatment- offering patients more personalized treatment based on actually cell studies. I was excited to find that this was an option for me. Unfortunately, at the time of my appointment, my tumor cells had not grown to a sufficient size to begin testing. Even now, 6 weeks later, the damn tumor is so slow-growing that the lab hasn't contacted my doctor with the results. This really makes a case that the tumor was present much earlier than diagnosed. It also means that I will not start treatment until we have these results. However, because the tumor is growing so slowly, there is really no rush to start empirical treatment with the past-drug regimen.

Another thing we discussed was the CA-125 test. Clearly I could no longer rely on this test because my values had been normal despite having a recurrence. So how else could I monitor the effectiveness of treatment? My doctor said really the only way was more CT scans, but this time every 6 months.

At the end of the visit I asked about outcomes. Already knowing the answer, I asked her whether my cancer will be a chronic problem for me. Most-likely yes. She said that due to the kind of cancer (clear cell) it was pretty likely that it would recur. I asked about what then and about more surgeries, and she said that with my good health that could always be an option. She did offer some hope though: everything about my cancer- age of diagnosis, odd spread pattern, clear cell type, and the characteristics of the new tumor (encapsulation & it's slow-growth) - made my case completely unpredictable. She did say that she still had hope for a cure. With all the new research, scientists are coming closer and closer to developing a cure. Most drugs would probably become available to patients in the next five years, and she was hopeful that I would still be around by then. It may be five years of frustration, but five years I can hopefully remain strong and deal with

December 2, 2010

Thanks

Just wanted to give a huge thanks to all of those who were so helpful during my surgery.

My roommates: Melanie, Paul, Talisha, Jim, Jasonelle, Paz --> you guys were awesome. Thanks for being there for my recovery. I'm apologize for anything said while I was high on IV Benadryl. I'm pretty sure I even apologized while drugged ;) Melanie thank you for being on the phone with my parents and giving them updates during surgery and for giving me a ride so early in the morning. I'm so appreciative of that and my parents are too.
Shawn: You were an amazing nurse to me. You were there the whole time helping me walk, keeping me company, measuring my pee, making sure that I didn't overdose on narcotics... And thank you so much for reassuring my parents and giving them updates. This definitely could be a promising career for you.
Other friends: Thanks for the support and well-wishes all around. I'm grateful to have so many caring people in my life. Laura and Justin- I haven't seen you in forever and I love that you were able to stop by. I also love the random emails I get from friends I haven't talked to in ages- it's uplifting.
Family: Mom & Dad you worry too much but I feel loved. Ashley, you are so positive about all of this which is so needed. Mom & Dad need that level head. Other fam, I know we haven't connected and kept in touch but I really appreciate the love even from so far away.
Dr. Swisher- you did an amazing job and know your shit! Thanks for managing my unique case and keeping up to date with the new research- it was so reassuring to see you at that Ovarian Cancer Symposium!
Laura the resident: You were the one who told me the results of my first surgery and gave me the news exactly how I would have done it. I love that you were on my case 2 years later! Also I'm convinced that you did my surgery this time. Attendings will never tell you that, but I bet I'm a practice case. No complications or complaints so far...
I highly recommend the University of Washington for any surgery- I guess last year it was in the top 5 or so in oncology.

Thanks again  everyone for the positive vibes!! You all are definitely part of the reason I'm still going strong!!

Statistics

I love this clip from my favorite TV show Grey's Anatomy. It's an interaction between a surgeon and an intern about a case of a patient (who actually is Izzie, the surgeon) with stage IV melanoma that has spread from the skin to the liver and brain. Odds are probably below 10% at the most.

Grey's Anatomy and odds

Hope

Many things have inspired me to share my thoughts on this...

I know the statistics are bad for this cancer. But who cares. My case is unique. So far many things about my case have been unpredictable. This is why there is hope:

1.) Staging: My dad just told me that my gyn onc would have originally classified my cancer after the 1st surgery as stage II because of the weird spread pattern. It spread NO WHERE else in my pelvic region or abdomen except a couple of nodes and my ovary. The only reason it was staged at IIIc is because of that tumor in the paraaortic lymph node near my kidneys. It wasn't even in my other ovary. This is highly unusual for ovarian cancer.
2.) Age: I'm pretty young. Pre-menopausal at diagnosis of ovarian cancer is very very rare. More common for clear cell type, but still.... I found a couple studies that the outcomes for those diagnosed young are much much better than in older women
3.) Health: No one could have been more physically healthy. I'm muscular (maybe losing a little of that), rarely get colds or recover quickly, and have no major diagnoses. My only issues are chronic back pain, insomnia, and bipolar- which I believe has made me a much stronger person because I have been through tough times so many times before.
4,) Gymnastics: I was a gymnast which is probably the toughest sport out there. I dedicated years of my life working 4 hrs a night conditioning my body and dealing with very very scary tricks. My back, wrists, shins, and ankles hurt everyday but I would get up and tumble or vault on that hard floor every practice. I would rip huge blisters on my palms where later I could barely wash my hair because of the pain- yet I still got back on that bar to finish my routines. I often came home and spent the night with two or three ice packs on various body parts. Cancer is no big deal after beating up my body for the awesomest sport in the world!!!
5.) Recovery: I am a queen at recovery. Yes fatigue is killing me and my sleep schedule is screwed up, but I had major abdominal surgery and was eating a normal diet, ditched the catheter, and walking around 24 hours later. Too bad I had to switch to oral meds in 24 hours too :( I should have stayed longer and took advantage of the decent meals and pampering. I could do without having to sleep with my arm out for the nurses to take my vitals at all hours of the night. And dragging an IV pole around to the bathroom or when taking a walk... Or having to measure my pee volume. I just started doing everything myself and beating the nurses to the punch. I shocked them when they came into the room and I was already walking around the room
6.) Support: see following blog!

So I hope all this helps those Negative Nancies (thanks Ashley for that silly phrase)