Sweet Jessica

I decided to go ahead and get my second Avastin treatment on Thursday. Even though it could put a delay on surgery if I need it, Dr. Gore and Dr. Huh seem to be in agreement that it should help my symptoms (poor appetite, trouble using the bathroom, abdominal pain) by possibly putting a stop to fluid buildup in my abdomen. I also wanted to get Dr. Gore’s take on the new information. He feels strongly that the BEP chemotherapy regime will put me through hell and possibly kill me without really doing anything at all to prolong my life. He seems to think the BEP is just not a good option and wants to see how the cancer responds to the Avastin.  We also had a frank discussion about what would happen if we ran out of options. He was very honest with me and I really appreciated it because I wanted to know what it would be like for me if I die from this cancer. He said hospitalization or home hospice care are options, but I think I would prefer to be at home. I would need to have a tube inserted in my abdomen at all times for constant draining of fluids and I would have a feeding tube inserted through my nose to avoid problems with vomiting. He felt confident that the pain would be something that could be managed, but at a certain point I would be on so much pain medication that I wouldn’t be able to communicate. IV fluids and the feeding tube could be removed when it’s time to let go. I am not saying all this to be depressing or because I am depressed (though I do not want to die), but at a certain point there might not be any more options for me and everyone needs to be prepared for the possibility that I will not win this battle. I think I am prepared to accept it if that time comes though it is certainly not the way I would want to go. I think it will be more difficult on the people who care about me than on me. I truly hate that and it makes me feel guilty that I might die. 

I did also get a phone call from Dr. Huh yesterday. He said he had talked to the pathologist that would be retesting the tissues from my original tumor and hoped to hear back by the end of next week. He said, “Between you and me, we are probably going to find out that it is juvenile granulosa cell. I just want to be sure though.” The options on the table for juvenile granulosa cell seem to be continuing the Avastin treatments and seeing how it turns out, the dreaded BEP chemotherapy regime, surgery, or some combination of the three. I told Dr. Huh that Dr. Gore didn’t seem to have any faith in the BEP regime at this point. Dr. Huh said that Dr. Gore could be right but it’s just impossible to know for sure what the outcome would be. 

I want to talk about something more upbeat now. I have an amazing friend who has been a sort of super hero to me through all of this. She came up with the, “There’s something about Mary” bracelets as a way for people to show support for me. She completely surprised me Monday with her latest idea that she had somehow managed to keep a secret from me for a while. She has been selling support shirts and surprised me by giving me all of the money she raised Monday!

back of the shirt

front of the shirt (it's a little wrinkled because I slept in it)

She has sold 60 shirts to my friends where I worked for 4 years so far and now other people are getting in touch with her about buying them. She is so smart and creative, and has always been an amazing friend to me! It’s so amazing and thoughtful that she came up with a new way to support me and that so many people wanted a shirt to show support also. 

A picture of me with Jessica

I wish for all the opportunities and good times for Jessica throughout here life because she is an extraordinary person. She has selflessly worked so hard to do these things for me and I can never say thank you enough or express my gratitude enough.

"Walking with a friend in the dark is better than walking alone in the light." - Helen Keller


Unfortunately, now and for the rest of the weekend I need to catch up on class work. This week was so stressful that I got behind again.

Cancer Sniffing Dogs!

I wish I could have seen my tumor. On the CAT scan or in a jar of some sort…. whichever. I looked up “granulosa cell tumor” on Google images, but some of the results just made me feel nauseous. I found this (not very interesting but won’t make you puke):

I don’t feel as horrible as I expected to feel this week and I’m very pleased about that. I’ve been exhausted, my muscles are sore, my bones are hurting, and I have generally cold/flu symptoms, but I feel that I’m doing ok. My tummy is swelling up again with cancerous fluids which both worries me and makes me look fat. I don’t understand why it continues to swell up or why the hair on my head continues to grow ever so slowly. The damn chemo better be working. 

Still have a theory that my balance is screwed up because my body hasn’t adjusted to having just one ovary. I can’t even remember if it’s the left or right one that is missing now… oh well, it’s probably logged somewhere in this blog. The flaw in my theory is that my balance continues to get worse instead of better. 

Today I found out that dogs can be trained to sniff out whether or not a person has cancer: http://www.huffingtonpost.com/2011/02/01/cancer-sniffing-dog_n_816961.html. Very interesting. Unfortunately, Emma’s only talents lie in napping, eating, and destroying things.

I'll try not to hold a grudge that she didn't warn me about my cancer :-P

Who is that in the mirror?

What cancer has done to my body:

 

I haven't been in a writing sort of mood lately... more of a painting/drawing mood. I don't want to forget about my cancer blog though. Because this blog was created as a result of me getting cancer, I wanted to show the full effect of the cancer/chemo. The quality of the picture is horrible so you can't even clearly see everything I was trying to point out. This is my current state though. This is my body now. 

My next round of chemo is on Monday and I am not the least bit excited....

Chemo Brain

In a way this blog is really good for me. It gives me something to do and I need to have things to do. I feel an obligation to write in it. That sounds negative but I like this feeling of obligation. I have very few responsibilities at the moment beyond show up for chemo and don’t lick doorknobs. Just a few months ago, I was very busy. I was responsible for school work, showing up for my job, and managing the only illnesses I was aware I had at the time. I enjoyed my level of stress to a certain extent and felt staying busy kept me happy. So I treasure this one small “responsibility” I have made for myself. However, this blog is also a source of some grief. I am highly aware that the chemotherapy and the exhaustion it has caused have dulled me down mentally. As I’m typing, I forgot how to spell words I would normally have no trouble with at all, will type the wrong word entirely, and make stupid grammatical errors. This is extremely frustrating for me and I reread my posts on average 3 times before I post them. Yet I have still have gone back and found errors later. I suppose I don’t need them as much at the moment, but losing my wits is painful for me. My mind feels like a Jackson Pollock painting sometimes. 

I guess when all this is “over” (I was told it won’t really be over for a long time), I get to call myself a cancer survivor. Sounds really dramatic to me. I might try to think of something else. “I had ovarian cancer but they got that shit out and now I’m minus one ovary” is a bit too long probably. 

I blew through 6 seasons of Weeds pretty quickly and I’m not trying to figure out how I can watch the seventh season without paying $21.99. For now, I started watching the series TEDTalks: Sex, Secrets & Love. “Would you die for love? Would you lie for love? These presenters' insights on sex, secrets and love are as surprising as they are delightful. Experts and humorists speak candidly about desire and attraction to illustrate the wonder of love.” The first episode was “Mary Roach: 10 Things You Didn’t Know About Orgasm.” It was interesting and I definitely learned a few things. She talked about a woman who for some odd reason would have an orgasm every time she brushed her teeth. I think some women might find this to be a fantastic discovery; but unfortunately, this woman was a religious zealot and felt she was possessed by the devil. She stopped brushing her teeth and switched to just mouthwash. Disgusting. I think it’s a shame that some people still view sexuality as something taboo. I guess for this women, brushing her teeth is a form of masturbation and she would rather let her teeth rot out of her head than masturbate. It’s very hard for me to try to see things from the perspective of someone like this. I feel sorry for her. 

I’ve been feeling a bit overwhelmed emotionally lately and hanging out with a depressed dog all day isn’t helping (I’m probably not good for her either) so I have an appointment with a new counselor next week. I hope she is much better than the last one… 

3,6,9

standin real fine

move it to you sing it to me one mo time

Get low

Get low

Get low

Get low

Get low

Get low

Get low

Get low

To the window, to the wall,

To the sweat drip down my balls

To all these bitches crawl

To all skeet skeet motherfucker

all skeet skeet goddamn

I have no idea if those are the correct words. Wow, that song really takes me back to a much simpler time… :-D

Round 3... of 6??

Emma and her raccoon toy coming to visit me before I left for chemo :-)

7:00 - Today is chemo treatment #3. I think I will write this post the same way I wrote the last chemo day post, just writing bits throughout the process since I’ll just be sitting in a chair for half the day. 

9:30 - I’m sitting here in my chemo chair waiting for them to get started. They seem really busy and a bit behind today. I just overheard a nurse say they are short staffed today so I might be here a bit longer than I normally would. But I’ve gotten to listen to a nurse explain what to expect to a new chemo patient and she is being much more thorough than the nurse I had, so I’m learning a bit. Or just hearing things I had to figure out on my own… I’m really, really sleepy right now so I might just pass out in a minute. Definitely will when they give me the benadryl (to prevent react to the first chemo drug, taxol).  I’m not sure I want to log everything that happens today anyway because I did that last time and I’m just so tired this time. 

Me and my chemo supplies

11:00 - Dr. Gore just came by and I’m just finished getting the IV benadryl so now I’m really sleep.  I will probably attempt to nap in a minute even though it’s noisy here. Dr. Gore gave me some disappointing news. I asked him how he will know if the chemotherapy was successful since the next one will be my last. He corrected me and I said I was never meant to do 4 treatments; I was meant to do 6! I know I was told 6 at one point and 4 at another, but I was sure the last word was 4. Oh well… At least I finally got my answer about how they will know I’m better. He said they will do another CAT scan. He added that sometimes the surgeon will open the patient back up to look around but they won’t in my case, so I’m pretty happy I don’t have something like that AGAIN my near future. I told him that my abdomen has swollen a little bit since it was drained 3 weeks ago, but he said it’s a good sign that it’s only a little swollen and that it hasn’t swollen up as quickly. Well, I’m about to fall sleep and my writing is probably extra sloppy so I’m going to try to take a nap now. 

12:45 - Just “woke up” from being half asleep for a little while. My stomach started to growl so my mom went to get me some food. I don’t think I will be here too much longer. I think the nurse said about another hour. 

2:00 - I’m almost done! Just a few more minutes of the second chemo drug (carboplatin) left!

5:30 – I’ve been home for a while now, napping away. I feel a bit better now after some sleep but still too tired to write anything more. So if this post is really boring, sorry but I’m just so tired today, so here is a link to a much better blog than mine: http://www.positivityblog.com.

Peacock!

Of course people with “pre-existing conditions” shouldn’t be able to get health insurance. Why not just keep us all away from doctors and hospitals and let Darwinism work its magic, right? I guess I don’t deserve reasonably priced medical care. I’m 25 and shouldn’t still be just a student. I should have a good job that provides me with health insurance. We can just ignore the fact that I got behind in getting through school because of health problems. Oh by the way, I just have to say that if what I’ve said makes you angry, you are probably someone I don’t want reading my blog so feel free to stop.  

Despite that little rant, I’ve calmed down since yesterday and I’m feeling much better today. I think I just started feeling overwhelmed and upset and it just progressed into a bit of a panic attack. The people that care about me helped pull me out of my sad mood. I still have a stress headache and I’m not excited about chemo tomorrow, but I’m ok. I’ve done some cleaning, laundry, and organizing because I know I won’t feel like doing it later this week. Soon, I’ll head to the store with my mom and pick up some chemo foods (stuff that requires little to no effort to prepare).

Honestly, I’m still in a grouchy mood and can’t muster whatever it would take to attempt to be mildly entertaining here. This crazy chat roulette guy is probably more entertaining than me anyway:

http://youtu.be/C9QJATiVps8

Adventures of Creepy Girl

С Днем Рождения мой жених!

Today is my pretend fiancé’s birthday. Well, in his time zone (Malaysia) it’s his birthday now. We had a little spat yesterday but that isn’t going to stop me from saying Happy Birthday to мой дорогой.  He is busy with work and spending time with a woman he can actually reach out and touch. Hopefully between the spat and him really getting laid, he won’t call off the pretend marriage. I wouldn’t be pretend disappointed; I would be really disappointed! Before the little spat, I did video chat with him and he looked very happy and very sweaty, so I hope he’s having a great time. I’m extremely jealous he’s at the beach even though it is also a business trip. I wouldn’t mind sitting by the ocean, listening to the waves crash and staring at it’s seeming infiniteness. 

Today I am on a mission that involves the state of my head. I have mentioned previously that the hair loss didn’t happen as I expected. It didn’t come out all at once. So currently there is still some stubble on my head. There is some hair that doesn’t seem ready to fall out and some parts that are a lot smoother. It is itchy and I hate it. I think I would be much more comfortable if it was completely smooth. So I am going out today to see if there is a place nearby that can shave it completely smooth. A barbershop or salon. I’ll just go in and say, “Hi, I’m going through chemotherapy but my head doesn’t seem to want to smooth out. Can someone please shave it for me?” I guess I could buy a nice men’s electric face razor but I think that would be more expensive and I would only need to use it once. Operation Smooth Head commences as soon as I finish putting on my makeup. 

I learned a new phrase in Swedish: “min online förälskelse” (my online crush)! I hope I’m not nearly as creepy as I probably sound… 

I just thought of 5 more things I might want to write about, but I not only have to keep in mind that as far as people I really know, I no longer have any idea who reads this, and I have to respect the privacy of others, e.g. not including others’ secrets or personal information without their permission. Even if I don’t include a person’s name, I like to feel confident that if I’m talking about something private, no one that reads this can figure out who that person is.

Counseling For Dummies

 Ok, I’m done with Sharon (counselor/therapist/psychologist). She really rubs me the wrong way. Maybe I could deal with her if her over the top personality was the only issue (probably not though), but her offensive comments have pushed me over the edge. Not only did she make highly inappropriate comments about religion and negative comments about people of different cultural backgrounds, she said one thing that just left me completely speechless. When I told her than I planned on embracing my baldness when it gets extremely hot this summer, she said, “That’s ok! People will just think you are going through a butch phase!” What the fuck? That is not ok to say in any setting, much less a professional setting. I already feel that I don’t need therapy but if I did, I would not put my mental health in this incompetent woman’s hands. Also, it seemed a bit alarming that the bookshelf in her office had so many For Dummies books on it (Depression For Dummies, Bipolar Disorder For Dummies, etc). I don’t actually like talking to dummies… and I certainly don’t want to leave therapy feeling worse instead of better. 

I went out today on a trip to get mouthwash and olive oil and I wore only a thin, pink skull cap. I’m sure I looked very much like a chemo patient and I got a lot of stares. It didn’t really bother me that much and I pretended not to notice. Maybe I should go the route of telling myself that people are staring because they think I am famous (ha!) or giving them all dirty looks and yell, “I have cancer! Do you have a problem with that??” No, not really my style.  :-)

Tonight I get to eat sushi and see my friends Kathleen and Perri! We are eating at the Japanese restaurant that I mentioned in a previous post. So I have two wing women and maybe I can now find out at least one of the names of the two cute guys who work there. Flirting is not my forte though. I’m just glad I get to see my friends! Gotta pack in some fun before chemo Monday!

*EDIT*

Just got some pink hair in the mail! Now I just need a crazy party to go to!

And they all look just the same

Little boxes on the hillside,

Little boxes made of ticky tacky,

Little boxes on the hillside,

Little boxes all the same.

There's a green one and a pink one

And a blue one and a yellow one,

And they're all made out of ticky tacky

And they all look just the same.

Because I have gotten really into watching Weeds on Netflix, I get the theme song “Little Boxes” stuck in my head a lot. I just finished season 3 yesterday and I’m sure I’ll start on season 4 today. In the future I hope my life has an excitement level somewhere between this current state and the madness that goes on in that show. No one needs to ever worry about me being a drug dealer though; I am not that “adventurous.”  :-)

I really hate that my memory is so horrible. It seems abnormal how terrible it is. There are some things I really wish I could remember clearly but that have faded to almost nothing, and yet I will remember the most random, useless stuff pretty clearly. For example, a bit of a television show I watched quite a while back popped into my head yesterday and I have no idea why it came up. It was about a married couple’s sex life. Some Oprah type show. The wife couldn’t achieve orgasm with her husband. She could only achieve orgasm by having sex with the corner of a laundry basket…  Ok, it’s true that the sex lives of others interests me greatly and I even thought I might like to be a sex therapist, but there are other, more personal memories I would rather hang on to but have lost. The person I’ve compared my memory to the most is my brother, because he could remember so many things clearly from childhood that I couldn’t remember at all. It doesn’t help when doctors ask me questions about my medical history and I’m just thinking, “Um…”  Maybe I should start doing brain training exercises and eating more foods with omega fatty acids. Maybe I just need to make a better effort to remember things? I don’t know but it frustrates me.

I normally never wear shorts because my legs are so white, I feel self-conscious about showing them off. However, it is already hot as fuck sometimes outside so I got a couple of pairs on sale yesterday. I could I could lie out in the sun and try to get a tan but then I might get cancer… oh, wait! I am not looking forward to miserably hot weather this summer though. I wish I could stay in the 60s and 70s all year round. I would love that.