I'm really lost.

Just got a phone call from my oncologist about my PET/CT results and he said he had no good news, again.

I was first diagnosed on 1/4/2015, had an emergency surgery the day after to relieve the pressure posed on my spinal cord by the tumor, followed by 7 months of chemo (VDC-IE) and I was told I was cancer free by August 2015, so I attended a PhD program focused on pre-clinical breast cancer research. one year later, the cancer came back, and never be able to fully delve into my work since. I had temozolomide+irinotecan, a phase I drug called TK216, then trabectidin+irinotecan, all failed to control the growth of tumor at some point. Now, I'm going to have cyclophosphamide+topotecan and I don't think it'll work for too long, if it ever works.

I was not sad at all when I heard the 'bad news', I hung up the phone and continued working on my thesis. I don't know how should I react to this, deep down inside I always hoped miracles would happen but reality is that I'm sliding into the abyss slowly and I don't know what I could do differently. I'm really lost.

It really sucks to be an international student in grad school with cancer. my parents naively believe that I'll be fine because I'm in a great country with advanced cancer treatments, that might be true, but not for Ewing's sarcoma. without family's support, everything can be really hard. but what can I do? no matter how depressed I am, my basic animal instinct drives me to do the right thing so that I can possibly live longer. and I do feel like an animal sometimes.

Comments

  • 6 Comments sorted by Votes Date Added
  • I understand how you feel. I often have often felt that I am living beyond my conscious will. That my inherent survival instinct is all that was driving me to continue. I think most people with cancer struggle with having feelings that do not match the way they think they should feel, but you can feel anyway you want about your situation. Often it takes a long time to digest the insane and impossible situation into which we have been thrust. I have had days when I get bad news and my reaction is to just keep going. Work can provide a meaningful distraction from all the bad news. I am sorry to hear that you do not have family close to help support you. I do not know if this is helpful but there are organizations like Imerman Angles or things like the Stupidcancer app that can provide you with one on one peer support, these helped me when I was diagnosed. If you want someone to talk to you are welcome to message me.
  • talenatalena Community Member
    I think that sharing your feelings, even online may be helpful, as you have done here. I am a grad student as well, recovering from non-hodgkins lymphoma treatment. I continue to try to focus on my research, I wish it were a more effective distraction than it is! I also understand the absence of support and the added burden that puts on you. We are here, even when no one else is.
  • talenatalena Community Member
    Remember, chemo is a semi-controlled POISONING! It is an animated (luckily for us, but not most) DEATH. You just remember to breathe, and sleep, and eat well. Those plants they use are toxic...but thank God for them, and for the knowledge given to those who use them! It is beautigul here on the other side of cancer! And it is beautiful there for those who's time was stolen. Keep your head up! :)
  • Here is an excellent place to complain, I don't think anyone can be "strong" all the time - it takes too much energy! Staying busy helps me a lot too. I can't work at all anymore but I try to find activities I can do at home other than sitting and watching TV all day. When I'm feeling well enough I chat with others online some so I don't feel as isolated.
  • Thank you guys for the kind words! I read your words over and over in the past few weeks during chemotherapy, and now I know I'm not alone on this. I also found it really helpful if I focus on work and I know it's probably the right way to keep on going, either to distract from depression or to feel alive. It's just hard to keep staying positive sometimes, people say I'm strong, but I know I'm not and I myself sometimes complain too much, I admire most American people's positivity and courage when facing cancer, which is kind of absent from my culture (blaming something again..). I will try to be a stronger person and not to let people down.
  • duanshizhaoduanshizhao Community Member
    Thanks guys for the cheering words! I have been recovering from depression since early March, I took lots of antidepressant but not particularly helpful, but sunny and warm days relieved my depression. I started participating clinical trials at NIH since early March but not sure if my current drugs work, good thing is they have a big arsenal of experimental drugs, and whether or not these drug works, the side effects of these drugs are minor. I'm going to have my 3rd set of scans since March (brain MRI, full body PET & CT) to make sure I don't have any brain mets and the experimental therapy I received from NIH is working. if the tumor is still progressing, I have to look for other options. Oh, by the way, I met a really professional yet empathetic psychologist who would spend hours talking to me and she even understands me better than my family and friends, no cultural barrier at all. I would recommend anyone with refractory or chemoresistant metastatic cancer to NIH, they have tons of government money investigating new drugs and doing clinical trials, not even the best cancer centers like MD anderson or MSKCC match NIH. I'm not saying NIH has the cure for me but they definitely provide more options which is kinda reassuring, because you know you have other options or backups if current one fails.