"Eat, Drink & See Mary"

This morning I woke up feeling completely miserable. I had really bad stabbing pains in my abdomen and chest, and I couldn’t stop vomiting. Now that I’ve taken my nausea and pain pills, and my mom made some toast for me, I feel much better. I’m hardly ecstatic that the pain in my abdomen seems to be getting worse and worse. On Thursday I get my 3^rd treatment of Avastin. 3 is the magic number apparently for deciding if it is really working for me or not. Sometime after that 3^rd treatment I will get another CT scan. Dr. Barnes said that if the Avastin has kept the tumors from growing, I should consider staying on it. It’s not ideal because I wished I could feel more energetic and deal with less pain, but it might be my best option. The Avastin side effects are not nearly as bad as the side effects for the chemo combination that might be the next step if Avastin fails. I thought I was chemo resist at this point but I suppose everything dealing with my cancer is more complicated than I would like. The numbers Dr. Barnes threw at me for the rate of success for the chemo do not sound promising (30% comes to mind for one option) but he felt it was enough for it to be an option worth exploring. If you listening to the recording I posted, you heard me tell him I do not want to go through hell for no reason. I guess I can’t help but feel at this point that I’m meant to beat this cancer. I wouldn’t say that I’m depressed but I also wouldn’t say that I’m feeling very hopeful. 

I feel that I should add because some people seemed a bit confused about it, that Avastin is not a type of chemo drug and they are not giving it to me in the hopes that it will cure my cancer. The best case scenario is that it shrinks my tumors a bit so I can get some more mileage out of life. 

 The trip to Vegas with my family is still on for now. I’ll be leaving on November 19^th and coming back on the 25^th. I’m both excited and dreading it (because I get exhausted so easily). If you know of inexpensive, fun things to do in Vegas that don’t require a ton of energy, leave me a comment about it or email me at CancerGirlMary@aol.com. 

Yesterday, I received a $200 medical bill for finding out my cancer is indeed the type of cancer the original pathologists thought it was. I’m still glad I had the tissues retested. Honestly, when Dr. Huh said it would be expensive to get it retested, I was imagining it costing around $2,000, so $200 seems great in comparison. Hopefully, they can let me set up a payment plan. 

I want to end this post on a happy note. My friend Jessica who is having the support shirts made for me and my friend Allison are through a little party for on November 12^th! “November is traditionally a month for giving thanks for all the good things in our lives. Please join us to give thanks for one another and to celebrate our friend Mary.” Most of the people who’ve been invited are my friends from the restaurant I worked at before I got so sick. I will be really excited to see all of them. Jessica and Allison want to try to get a group photo of everyone in their “I wear teal for Mary” shirts. I really, really hope I am feeling well enough to go because I can’t wait!

I hope everyone reading this is having a nice week so far, where ever you may be. :-)

HAPPY BIRTHDAY RYAN!

Today is my brother Ryan's 25th birthday and I wish I could be in California to see him. Hopefully if my family's trip plans work out, I will get to see him in November. Here is a picture from last year:

Yesterday, my mom, dad, and I met with Dr. Barnes because I was feeling so overwhelmed and stressed out about all the information that's been circling around in my head. Even though the statistics he gave me did not sound great, I left the appointment feeling better. My dad recorded most of the discussion on his phone, but the very end of the conversation got cut off because his battery died. If you are particularly interested, I added the recording below, though it is a bit lengthy.

I don't think anything particularly important was said after the phone battery died. I was in the middle of expressing my concerns about not getting adequate nutrition on the low fiber diet I have to follow. So now we just wait until November for the 3rd Avastin treatment and a CT scan sometime after. Then decisions will be made depending on how my cancer is reacting to the drug.

My mom's coworker Leon gave her the card of a lawyer he goes to church with who was willing to help me deal with all the legal matters I need to take care of in my current situation. Last will and testament, power of attorney, living trust. I talked to him (his name is Brandon Cooper) today and he told me he wouldn't be charging me anything for his help. I don't think I would be holding up as well as I am if amazing people weren't stepping up to help me through these unfortunate times.

And now I'm going to spend a bit of time with my friends Jessica and Allison (and Allison's adorable kids Harrison and Stella). Maybe the mess in my head will eventually settle and organize somehow so I can write better posts. Maybe not.

Email to the Art Department

"Hi, my name is Mary. I am an accounting major and I haven’t taken any art classes on campus or anywhere else. I wasn’t sure who to go to with this question, so I think I will explain my situation and what I was hoping for. I was diagnosed with ovarian cancer at the very beginning of this year. After going through 7 rounds of chemotherapy, my cancer still regrew and spread quickly. My oncologist says my cancer is chemo resistant and estimates that I have about 6 months to 1 year to live. I hope he is wrong about that. While I was going through chemotherapy, I started to paint. I really enjoyed it and it relaxed me and distracted me from how terrible I was feeling. This spring semester, I want to just sign up for classes I enjoy. I was really hoping to take a course in painting, but I do not have the prerequisites to take any of the classes available. Ideally, I would love to take a class that I could primarily do at home because I get very tired. Are there any options available to me? I really appreciate any help or advice you might have, even if my only option is to get painting lessons somewhere." 

Whatever happens, I just want to enjoy my life. 

I am not sure if this video will work. It's a recording of the meeting my parents had with Dr. Barnes had that they weren't going to tell me about. Luckily, my dad recorded it and set it to me after I found out about it.  

Gambling

Dr. Huh called me today with the results from the new pathologist. As he suspected, my diagnosis has not changed. We are still dealing with juvenile granulosa cell cancer. The main contenders for treatment options are Avastin, the alternative treatment Dr. Barnes and Dr. Gore originally presented to me, and BEP chemo. Dr. Gore seems to strongly feel that BEP isn’t going to work. He thinks Avastin will give me the best quality of live for the time I have left (about 6 months to 1 year according to Dr. Barnes). Dr. Huh feels that even though BEP might be hell and cause long term side effects, it shouldn’t be completely taken off the table. So I have one doctor telling me BEP may or may not work and one doctor telling he isn’t even considering BEP. Dr. Huh agreed with me that there are no good options at this point and any choice is a gamble. I am completely overwhelmed. I’m fairly certain this is the biggest decision I’ve ever had to make and I have no idea what I should do. Dr. Huh mentioned getting a biopsy of one of the tumors now living in my intestines to see how it reactions to different chemo drugs. I can’t help but find that kind of interesting, especially since all the doctors seem to agree that my cancer is acting abnormally. I probably didn’t ask enough questions when I had Dr. Huh. I can’t think of all the right questions and I think it’s because I don’t even want to think about this stuff. 

I’m trying to get in to talk to Dr. Barnes as soon as possible to get more information and see what he thinks about all this. He is the go to guy when it comes to gynecological oncology and he has been in contact with Dr. Gore and Dr. Huh. I really hope he can make the decision clearer for me. This time I should probably make a list of questions before I go and not worry about taking up too much of the doctor’s time like I normally do. My life is on the line and I stressed out and scared. 

On a happier note, my sweet Aunt Cindy gave me a gift card to a spa and I used it on Saturday to get my hair colored back to red (my original hair color before chemo) and to get a facial. Here is the result of the coloring process:

Emma definitely brings the cuteness to this picture. Also, I really miss my long hair :-(

I’ve gotten it in my head that I want to start some kind of Mary Scott Foundation so if I pass away. My hope is that it could fund a scholarship for a student who has cancer or is a cancer survivor. Maybe it could help raise awareness about ovarian cancer. This is a big idea though and I wouldn’t even know how something like this could come to be. 

A few pictures of friends and family showing support with their t-shirts:

My friend Cathy's adorable kids

My friend Nick and his beautiful daughter

The back of Joe's shirt

Kathleen took a close-up of the front of her shirt

 I know some people have expressed interest in getting a shirt. My friend amazing friend Jessica is making the shirts but if you want to email me at CancerGirlMary@aol.com, I can work something out with her (I doubt she would want me posting her email or phone number here). Her friend's mom is making the shirts for us in long and short sleeve, in adult sizes small - 3XL and youth sizes small - large. 

I'm sure there is more to say, but I have so much bouncing around in my head right now that I can't think of anything else. So now I think it's dinner time and then bedtime.

When? How? Why?

My mom confessed to me last night that she and my dad went to see Dr. Barnes, my surgeon whose specialty is gynecological oncology, without me. I was very angry because I don’t want any information dealing with my cancer withheld from me. Both my parents apologized and said that was not their intention. Dr. Barnes still agrees with Dr. Gore that the alternative chemo option, BEP chemo, is not worth exploring because it will make me completely miserable without the payoff of adding time to my life. Continuing with the Avastin treatments will give me give me the best quality of life during my remaining time, which Dr. Barnes estimates is between 6 months and 1 year. I think this is what they tried to explain to me the last time I saw them – that with the Avastin treatments, I will feel the best I can for the rest of my life. I had just imagined that the Avastin could give me a lot more time than 6 months to a year. Last night I broke down and cried because honestly I am just so scared of what I will be facing. I considered dropping all my classes last night to just get rid of the extra stress they cause and because it seems that I probably won’t have enough time to finish my degree. Today I am feeling a bit better and I decided to keep my classes because I think staying occupied really helps me fight off depression. Being concerned with meeting deadlines for completing assignments or studying for tests really helps keep me from dwelling on the shitty stuff. My family wants to go with me on a little trip during Thanksgiving break if I am feeling up to it. Right now we are thinking of Las Vegas. I was originally not excited about that destination but after looking it up, there are a lot of fun things to do there that don’t involve gambling. Also, the Grand Canyon is nearby. I think it will be a very tiring trip for me, but I really wanted to get out and do something special, especially since it could be my last chance. 

The Grand Canyon

The fountain at the Bellagio

The Strip

Let me know if you've been to Las Vegas and did something fun there that I might not know about. Or if you have any traveling tips or ideas.

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.