Tag Archives: stage IV

Stupid Statistics

9 Aug

Have you seen the 5 year survival rate for people with stage IV RCC? <10% Not very promising. What the hell am I doing with my life? I shouldn’t look stuff up anymore. I kinda forgot about those numbers for a little while until my school was all like, “here, have Epocrates for free!” And then I got the brilliant idea to look it up. I know better than that. You don’t look at survival statistics. You. Just. Don’t. Now what kind of hope can I have? Why am I even bothering with school? Why can’t things be like they used to be before I actually had to care about all of this stuff? I feel like I’m mourning a future I’ve never had and I don’t even know what’s going to happen to me yet. Stupid statistics.

*****

So…about statistics…I hate them. The survival rate for people with Stage IV metastatic RCC…people like me…is less than 10%. People always say it’s better than 0%, and it is, but the number still stands. Taunting me. I know I’m not supposed to worry about things like that right now, but that’s much easier said than done. It’s even harder when your doctor is a “straight shooter” who reminds you of things like this occasionally saying, “I just want you to know what you’re up against.”

It’s hard to “be strong” and “keep fighting” when the thing I’m fighting is myself, and all I really do is sit there and get injected with poisonous chemicals. I wouldn’t call that much of a fight. Not a fair one, at least. What if I don’t have the energy for this anymore? I know there are people who have had cancer for much longer and have had to put their lives on hold…people who are worse off, but that doesn’t take away the frustration and pain that I’m feeling. It’s like saying I can’t be happy because other people have it better than me. It just doesn’t seem to work that way.

I have little to no control over what’s happening to me, and that makes it hard to deal with. I know what Randi would have me do right now, but I’m not as strong as her. And I know she got frustrated and down, don’t get me wrong, but she had much more “fight” in her than I feel like I have right now. And who knows, if I die…I’ll get to see her again, so maybe that wouldn’t be so bad. It would sure be a lot less financial stress on my family. My mom is about to lose it with all of these medical bills. I could ramble on about how depressed I feel right now, but I think I’ll spare you. The fact remains though, that 10% is not a large number, and only a few people get to be in that 10%, and it doesn’t seem like it will be me. And what about 10 years out? 15? 20? The numbers just get lower and lower from there.

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Helpless

6 Jul

Oh no, I love waking up at 4 AM in excruciating pain and not being able to fall back to sleep. It’s okay, I don’t mind vomiting until I can’t believe that there’d be anything left inside for me to bring up. No, I’m fine with having stage IV cancer with mets that won’t go away, that I won’t just “get over” so I can move on with my life. I don’t mind having to have conversations about Hospice while I’m only 22 years old, before I reach my dream of being a doctor. I know I’m a good person, and I didn’t do anything to anyone. I know that life is so unfair and never will be fair. I know that I lost my friend when she was 23, and she was the strongest person I’ve ever known. She never stopped fighting, and she still died. People die. That’s just how it goes. That’s a side effect of life. I know that my life has been full, so I guess I’ve lived a whole lifetime in these 22 years. I must have, right? Then why do I feel so angry right now? Why do I feel so helpless? Life is not going how I thought it would. I don’t want to hear my parents’ voices crack every time they talk to me. That’s bull, they shouldn’t have to feel this way. I don’t want my little brother to avoid any serious conversation with me. We’re growing apart when we should be coming together. I have to comfort everyone I talk to in some way or another or listen to them tell me things that I know won’t happen. Or they tell me things that make them feel better, and I have no idea what to say. I don’t know what to do. I used to be in control. I used to have my life all planned out, and now it’s all fallen apart. I have some tough choices that I don’t want to make. I just want to be able to sleep right now and not have to think about any of this. I don’t want to have to make this decision. I just want to close my eyes and pretend this isn’t all happening. Fxck Cancer.

“What a weary time those years were — to have the desire and the need to live but not the ability.”

2 Jan

I found out that my Aunt’s breast cancer came back, and I also found out that my friend’s little brother’s cancer came back in his shoulder. He has osteosarcoma. It’s like everywhere I look it’s freaking cancer, and it won’t leave me, or anyone else alone. Usually I can have a pretty good attitude about stuff like this, or at least an okay one, but seriously, this is becoming just too much. Sometimes I can pretend to be okay long enough to fool myself into thinking that it doesn’t really bother me, but that’s really not working anymore. I have a therapist and social worker and everything to talk to, but I feel like they’re just frustrating me now. They’re saying all the textbook things to say, but they’ve never had cancer. I mean I would never wish for them to or anything, but I feel like they don’t get it. And I know that I’m going to die, I know what stage IV metastatic RCC means…I see the people at the weekly infusions slowly stop coming, or the people that I talk to at support groups or at the infusion center die, and I just have to wonder when that will be me. I’m feeling really discouraged. Like what’s the point in even trying if I know what’s going to happen? I’m lonely here anyways. I just want all of this to be over. Like now.

Headed in the Right Direction

27 Dec

Since we couldn’t get the answers we wanted from the doctors we visited, my mom called a doctor up at Memorial Sloan-Kettering in NYC. This guy basically wrote the book on head and neck cancers. He said that they have divided up his department, and he now only does thyroid cancers, but he advised us to take my dad to Moffitt. She decided it’d be convenient to take us both there. Since Moffitt is an NCI, I think they had an easier time communicating with my doctors back in Georgia, who also are part of an NCI. They had all of our scans pulled up on the computer already when we came in and everything.

So, yesterday we went to Moffitt, and my dad saw the head and neck surgeon who does these specific types of surgeries in his sleep. He only does this, and that’s it. From the MRI that my dad had, we know that the tumor left behind is actually 2.8 cm, not 1.5. This adds up to about 4.3 cm. This technically puts him at a stage T3. The surgeon scoped him and confirmed this. He also said that it invades the base of his tongue, and it’s right in front of his epiglottis. It’s not another tumor, it’s an extension of the original tumor. They think he has some microscopic disease going on in the lymph nodes, as the ones on the left side are slightly enlarged. He said he definitely would not suggest further re-excision or any more surgery, as this would cause permanent dysfunction to his speech and/or swallowing, and he would still have to get chemotherapy and radiation. Why do it if chemo and radiation could achieve the same results without the surgery? So, what he said was the protocol that they use is 7 weeks of radiation, with 5-FU and cisplatin on days 1, 22, and 43 of radiation simultaneously. They also do the PET scan while doing the radiation simulation to get better targeting. There was also a study being conducted by a radiation oncologist there comparing 2 cycles of this chemo to weekly chemo treatment with Erbitux all while doing the radiation. This trial is being done in HPV positive patients, and my dad is one of them, so it’s possible that he could qualify.

After meeting with him, the radiation oncologist was there, and said that he could meet with my dad. He wasn’t even supposed to be in that day, and they had no appointment with him, so this was very convenient. Now this guy has about 25 years of experience with specifically head and neck cancers, and a lot of experience with HPV positive tonsillar cancers, as he is conducting research on it. He said almost the same thing, but his treatment plan was a bit different. He suggested 6 weeks of radiation, with one day a week being doubled-up, as in radiation in the morning and the afternoon. He’s going to bring my dad’s case before the tumor board on Tuesday to see if he qualifies for the trial, as the tumor may be too large, there may be too much lymph node activity, and he also wants to see if he even needs chemotherapy. If he does, it would be cisplatin alone 3 times throughout the radiation. He’s going to have radiation simulation with the CT scan today and with the PET scan next week. He’ll have to have a dental appointment to make sure his teeth are ready to handle this radiation nonsense, and then he should be able to start about 2 to 3 weeks after that.

I met with a medical oncologist who does a few different kinds of metastatic cancers. He said that he would have done 2 more days of radiation for the bone mets. He thinks that would have been more effective in managing my pain. He also said that he would have chosen a different order, basically, for the medicines that I have been put on for the control of the tumor growth. He’s pleased that I’m on the Axitinib (Inlyta) now. He said that he would have taken out the whole right kidney, but it’s too late for that now. He does, however, want to consider trying Zanosar, but he’ll have to take this to his tumor board, which meets next Thursday (not the one today). It was a little discouraging listening to all the things he would have done differently, but that it’s too late to change. It makes me think that things could be a whole lot different right now had I gone to them in the first place or had I started out at an NCI at the very beginning of my treatment. It just seemed like a lot of coulda, woulda, shoulda during my appointment, but he said that he’s hopeful that the treatment I’m on now should give me the best chance for basically living as long as possible. He also gave me some tips for gaining back some of the weight I’ve lost, so I’m going to try those. He confirmed that what we’re doing now isn’t exactly standard, but it’s what he would try at this point. But he doesn’t like that my symptoms aren’t well controlled, so he’ll work with me to adjust the dosages in order to get them under control. Especially with the breakthrough pain and the nausea.