Dr. Huh

I'm so glad that I decided to get a second opinion about my cancer from Dr. Huh, a gynecological oncologist at UAB hospital today. I was really impressed with him. He was smart and thorough. He said my cancer is not behaving the way juvenile granulosa cell cancer typically behaves. It is not normally so aggressive and does not cause the major problem I’ve been having with ascites (fluid building up in my abdomen). He felt the pathology report done of tissue from my original tumor could have led to the wrong conclusion and that we might be dealing with a different type of cancer. Dr. Huh strongly recommended that the tissue be look at again by an internationally renowned pathologist and said that if I were his daughter, he would want to be absolutely certain that the diagnosis was correct so I could get the right treatment. I was completely on board with this idea because I had wondered if it was possible that my diagnosis was incorrect but never asked. He said it would take at least a week before the report came back but he caught us in the lobby as we were leaving to say he was going to do everything he could to rush the process. 

He gave me so much information and so much to think about that I’m not sure where to go from here in this post. I think I will do use bullet point to make it easier on myself:

>The notes from all my CT scans made their way from the cancer center at St. Vincent’s to Dr. Huh’s office at UAB, but he did not get the actual images. He said to be on standby in case he gets the scans and decides I need surgery. 

>Depending on what the new pathology report says, Dr. Huh might want to have a laparoscopic biopsy done to get a sample of the newly formed tumors.

>If the cancer is juvenile granulosa cell, the estrogen being produced by my remaining ovary could be contributing to the newly formed tumors. I don’t think he was suggesting that the other should be removed because there isn’t a way to know if that is the case. I’m not actually sure if he was just giving me information or saying that removing the second ovary could be a possibility, but he did bring up something Dr. Barnes had told me before my surgery in January: if I was much older, Dr. Barnes would have just performed a full hysterectomy to be cautious. He left some of my lady parts to preserve my fertility. 

>Dr. Huh had to examine my vajayjay. I had a feeling that might happen but it always makes me feel super awkward. I’m not 100% of what he was looking for in there. I like having all my clothes on when I meet someone for the first time. 

>The chemo regime I was on was taxol and carboplatin. Dr. Huh said the more traditional approach to treating juvenile granulosa cell is BEP chemotherapy (a combination of bleomycin, etoposide, and cisplatin). This approach is more aggressive and there are concerns about toxicity and it affecting my quality of life. The side effects are also much worse. He gave me the option of starting chemotherapy right away but I told him I wanted to wait for the pathology report to came back. 

>He was also ok with me cancelling my Avastin treatment in the morning until the report comes back. The Avastin could help to reduce the fluids in my abdomen but it also makes surgery riskier if I need it. 

I’m too tired to think of anything else. I remember thinking that the hard times were over and it was all going to get better. Although I have no idea what’s in store for me at this point, I know that more hard times are ahead now. I feel as though I’m being tested to see how much I can endure. I haven’t broken yet. So to cancer I say, “Bring it on, bitch.”

Re:

Lately I’ve been so tired and depressed that I haven’t been responding to emails, messages or cards… or updating this blog. 

Because I haven’t been feeling well, I will copy and paste a response to an email asking how I am doing as a substitute for a real post:

“I'm sorry I have not written or stopped by lately. I've just been feeling really tired and depressed. I had a CT scan and then met with my oncologist and the surgeon who removed my original tumor. They saw that several tumors had grown very quickly in my intestines after having just finished 7 rounds of chemo 2 months before. They say the cancer is much more aggressive than it should be and it seems it is chemo-resistant. Right now I am on a different kind of treatment called Avastin. I was told that if the Avastin doesn't work, there are no more good options for me because my specific type of cancer is so rare. I feel like I'm just waiting to find out if I'm going to die, so it's been hard to feel happy about anything or motivated to do anything. I'm trying to keep up with my classes though so my mind will be occupied. However, I keep feeling sicker. Today I felt like I was going to fall asleep on the drive to class and on the drive home, and I felt so nauseous during class that I couldn't focus. I'm not depressed all the time but it's really difficult to stay positive right now. It's stupid but I never seriously considered that I could die from this cancer. I always thought I would get surgery and then chemo, and then everything would be ok to some extent. I'm sorry if this email is depressing, it's just hard not to worry about what's going to happen to me.”

My doctor started me on a real antidepressant because of the circumstances and how down I’ve been. Even though I was expecting it, my birthday present from BlueCross BlueShield was to get booted off both my parents’ health insurance policies for turning 26 years old. Just 15 capsules of Cymbalta cost $127.50 when you don’t have health insurance. It seems as though the Cymbalta is helping already though and we (me and my parents) have been working on getting the health insurance issue worked out. My dad is trying to get me on a program called COBRA. I also had a Social Security Disability hearing last month and was approved. I think I should get Medicaid or Medicare now as a result. 

So many people want me to get a second opinion even though I felt fine with waiting to see how this current treatment was going to work out. My mom got me an appointment with Dr. Huh at UAB hospital, a gynecologic oncologist. I have a lot of confidence in my current doctors though so it’s hard to imagine this new doctor coming up with something very different. I guess I will have to wait and see. I will update when I find something out.

Birthday

My yummy strawberry birthday cake

Today is my birthday! I’m too tired from the little party my mom had for me to write much, but it was a good day. So many people have gone out of the way to show me that they care and it really fuels me to keep on moving forward with my head held up. 

All the birthday cards I've gotten the last few days

 I’ve been feeling sick and even more tired lately. My chest hurts, I get short of breath easily, and sometimes I cough until I throw up. Last night at the hospital I got some antibiotics through an IV and I have some antibiotics to take at home. I really hope that helps because the doctor in the emergency room couldn’t give me a reason for my feeling so shitty.  

Because I know I won’t be able to study abroad in Germany like I hoped, I’m going to try to save the money some have given me for my birthday to take a trip. I wanted to travel and I intend to make it happen somehow, whether I have many, many years ahead of me or not quite so much time. It gives me something fun to think about and try to plan. I’m curious about what you might think is the best place to travel. If you could pick any place in the world to go, where would it be? What is your dream vacation?

This is Mary's Mom.....

Mary has been wanting to post an update, but has been too tired to do it so she asked me to write a few words. 

Mary's brother Ryan, who is a Marine, is sporting a new tattoo to show his love and support for his big sis.

Mary's birthday is Saturday, and we (her family) are working to make this a special birthday! 
We are all so incredibly proud of Mary and the way she is just living her life, working hard to not let her life revolve around cancer.  While she does have her ups and downs, she is trying to stay positive. 

Please keep her in your prayers, and thank you for the continued support and encouragement you've shown my precious daughter.
Beth (Mary's mom)

From Bad News to Worse News.

When I started this blog I named it “Adventures in Cancer.” What a silly, naïve title for a blog about battling cancer. I guess I gave the blog that name because I was thought that even though I would have to go through some tough times, I would be ok. I don’t think I ever seriously considered the possibility that I could actually die. Yesterday was like get a bucket of ice water dumped over my head.

I talked to Dr. Gore, my oncologist, with my mom and dad for a long time before they administered the Avastin. I knew the type of cancer I had, juvenile granulosa cell, was rare to begin with. Dr. Gore said it is acting much nastier than expected. I had a very bad response to chemo because the cancer started to grow again so quickly. (I know I’m not doing a good job of trying to re-explain everything he told me but bear with me). He explained how surgery was not a good option because even after having surgery in January to remove the tumor and parts of my “stomach pad” that had cancer, the tumor still regrew quickly. Also, if I had the surgery to remove tumors on my intestines, it would make getting this different treatment, Avastin, much more risky. The scariest side effect of Avastin that he said would probably kill me is bowel perforation and there is a much higher risk of that happening after a surgery like that.

Best case scenario: The Avastin shrinks my tumors and I continue to take it until it stops being effective or (I think) until it is causing too much damage to my organs.

Worst case scenario: The Avastin does not work. I asked Dr. Gore what would be the next step if the Avastin doesn’t work and he said there really isn’t a next step. After Dr. Gore and Dr. Barnes consulted with other doctors and pharmacists, they couldn’t find anything else. There aren’t any clinical trials for someone with my rare type of cancer. I suppose they would just try to make me as comfortable as possible until I pass on.  

I think the best thing to do would probably be to stay positive and really hope this Avastin does its job. But I’m feeling really discouraged and disheartened. I should be driving to class right now but I just couldn’t bring myself to go today. I want to try to continue living my life the way I was living it last week but it’s difficult to motivate myself with all this bleak news. I cried so much as the cancer center yesterday. I started to think of what I would want to say in my last will and testament. I don’t own anything of value and I have very little money, but I know that if I have any organs left that are still worth using, I want them to be donated to people who need them. I also know that I would want to be cremated, not buried.  I would want to make sure everyone who cares about me is contacted so they aren’t left in the dark. I would also want the little bit of money I do have to help pay for costs related to my death, though I don’t have enough to be of much help. I think that’s as far as I got in that line of thinking. I don’t want to die. I had plans and I’m not ready. But if that is what is in the cards for me, I think I can accept it. The worst part is how much that would affect the people that care about me.

I feel it’s probably best to put those kinds of thoughts out of my head and instead hope that this new treatment works. Trying to stay positive has served me well during this rough year so I need to keep it up. If I had one wish for anyone reading this, it would be that you would take the time as soon as possible to tell the people you love how much they mean to you. We don’t all do that nearly enough and you just don’t know what might be around the corner.

Avastin.

Overall, today was not a great day. I’m so fucking drained that I will probably make a mess of this post.

Dr. Barnes, the surgeon who removed my tumor in January, looked over my CT scan results yesterday and I went to see him today about what he saw. He said that he saw several small tumors on my intestines and that granulosa cell cancer doesn’t typically act this aggressively. He thinks the cancer might be resistant to chemo at this point so he wants to try a new drug: Avastin. I haven’t heard of this drug before today so I’m sharing this information as I look it up:

Avastin is a tumor-starving (or anti-angiogenic) therapy. The purpose of Avastin is to block a protein called vascular endothelial growth factor, or VEGF. Normal cells produce VEGF, but some cancer cells overproduce VEGF. Blocking VEGF may prevent the growth of new blood vessels that feed tumors.

Avastin is given as an infusion. That means you receive Avastin through a small needle in your vein or through a port.

The most common side effects of Avastin are:

>Nosebleeds

>Headache

>High blood pressure

>Inflammation of the nose

>Too much protein in the urine

>Dry skin

>Rectal bleeding

>Tear production disorder

>Back pain

>Inflammation of the skin

The most serious side effects (not common, but sometimes fatal):

>Gastrointestinal (GI) perforation. A hole that develops in your stomach or intestine. Symptoms include pain in the abdomen, nausea, vomiting, constipation, or fever

>Wounds that don’t heal. A cut made during surgery can be slow to heal or may not fully heal. Avastin should not be used for at least 28 days before or after surgery and until surgical wounds are fully healed

>Serious bleeding. This includes vomiting or coughing up blood; bleeding in the stomach, brain, or spinal cord; and vaginal bleeding. If you recently coughed up blood or had serious bleeding, do not take Avastin

Other possible serious side effects:

>Abnormal passage in the body. This forms from one part of the body to another and can sometimes be fatal

>Stroke or heart problems. These include blood clots, mini-stroke, heart attack, and chest pain. These can sometimes be fatal

>Severe high blood pressure. Blood pressure that severely spikes or shows signs of affecting the brain. Blood pressure should be monitored every 2 to 3 weeks while on Avastin and after stopping treatment

>Nervous system and vision problems. Symptoms include high blood pressure, headache, seizure, sluggishness, confusion, and blindness

>Kidney problems. These may be caused by too much protein in the urine and can sometimes be fatal

>Infusion reactions. These may include difficulty breathing, chest pain, and excessive sweating. Your doctor or nurse will monitor you for signs of infusion reactions

>Fertility issues for women. Avastin could cause a woman’s ovaries to stop working and may impair her ability to have children.

An attempt to look on the bright side: Hair loss and fatigue are not listed as side effects. Also, a radiologist drained almost 3 liters of fluid from my abdomen today which made me feel a great deal better.

Really though, I’m exhausted and terrified. I have to pretend to be brave and strong now in an attempt to convince myself that I am brave and strong.

I find out more tomorrow when I go in for my first treatment. Now I just want to try to relax and take my mind off all this by finding something really funny to watch.