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.

Scan.

I had the CT scan this morning. I was planning on seeing my oncologist on Thursday to go over the results, but Dr. Barnes, the surgeon that took out my tumor, looked at the CT scan results and now he wants to see me tomorrow. I'm just so depressed. Why can't things just work out and be ok? Wishful thinking doesn’t cure cancer. I just wanted my fucking life back. Why do I need to see a surgeon? Will this ever end? Could I die from this?

Why???

Hope or Fear

My abdomen has been swelling up with fluid again and I haven't been feeling well at all lately, which are both bad signs. My oncologist is bumping up my next CT scan from October 18th to next Tuesday. I will go over the results with him on Thursday. I've been feeling down and out about it so please cross your fingers that I do not have to get more chemo.

An Explanation.

If one was even necessary...

"Hey, I just wanted to say that I hope that I didn't offend you. It's more of an issue of me having too much else going on. I've been throwing up a lot lately and my stomach is swelling up so my oncologist wants to do a new CT scan next week. If it doesn't look good I will probably have to get more chemo. I'm also really stressed out because I can't seem to keep up in my classes because I feel too tired so much. Basically I'm saying that I'm a mess right now and I feel like I just want to keep things as simple as possible."

Desperation.

This weekend was extremely productive in terms of getting work done for classes. The reason, however, was brought about by a stupid and dangerous accident and then a stupid and dangerous decision.  

I wrote not long ago that my doctor switched me from Adderall XR to Vyvanse. I was having trouble with getting irritable for no reason and getting tired too early in the day. I was told the Vyvanse would work a bit longer and maybe keep me on an even keel.  I did not seem to get as much pep from the Vyvanse as with the Adderall and it did not last longer as I was told. I also started having a problem with vomiting (after having no problems with vomiting for quite a while) after starting the Vyvanse.

How I got off track:  I decided on Saturday that I would go back to taking the Adderall instead. Neither medication was fully making up for the physical and mental energy I lack now, but Adderall seemed to work a bit better. I woke up Saturday morning and automatically took the Vyvanse with my vitamins without any thought. I had done it so unconsciously that when I took an Adderall a couple of hours later as planned, I did not even realize what I had done. I made the connection when I felt super focused on my readings and assignments the entire day without dealing with my usual physical and mental fatigue. I was robot focused. I really absorbed the material I was reading and did an excellent job on my assignments. I felt like I was operating like a machine and I liked it. I was finally catching up on all my Management course work. I decided not to freak out when my nose started to bleed a little bit later in the day.

Sunday, I desperately wanted a repeat performance of the ultra-productivity I had on Saturday. This time taking both was not an accident, it was conscious decision. Taking two different amphetamines that are meant to be taken alone was idiotic. I had no idea what kind of problems this could have caused; I just felt it was worth it to get back some semblance of the energy I used to take for granted so I could maintain the good grades I’ve been working so hard to earn. I knew I was abusing my medications though and I knew continuing to do it would be unsafe. I made the decision to start taking only one of the two medications and to call my doctor to see if he had any other solutions to the situation.

Monday morning I woke up very hungry because the Adderall/Vyvanse combo had caused me to not want to eat very much during the weekend. As soon as I had breakfast, I threw it back up. I called into work sick and hoped I would feel better as the day went on. I felt tired though and couldn’t focus on my school work like I had during the weekend.  I got so frustrated and stressed out. I was so nauseous and my head was just pounding, so I didn’t get much work done at all. After dinner I was sure I was going to throw up again. As I was dry heaving into the toilet, I starting have these stabbing pains all over my chest and my arms went numb. I don’t recall that ever happening in the past.

Today, I will call my doctor. It isn’t acceptable for me to abuse medication but I also can’t seem to accept my limitations in what I am capable of doing. Frustration and stress are the big feelings of the moment.