I had a PET scan on New Years Eve. The following day I received a call from my oncologist. It's almost always a bad sign when a doctor calls, especially on a holiday. The cancer had progressed in my lungs, spine and lymph nodes. This is the fourth time a treatment has ceased to be effective for me, but the news still hits me hard. Maybe even more so the fourth time around as there feels like less treatment options available. Admittedly, this hopeless feeling is due to my ignorance of available treatments, but I can't shake the fear that my days are imminently numbered.
For now, as I wait to get a brain and spine MRI before determining the next chemo and radiation treatments, I wonder whether I have gotten the most out of life.
UPDATE:
Currently, I'm getting my spine radiated. Other than some soreness in my upper back, I'm dealing with the radiation fairly well.
Next Tues, after I finish the spine radiation therapy, I'll have Stereotactic Radiosurgery (SRS) for the tumor in my brain. The term surgery is a misnomer since SRS is really radiation beams directed at the tumor. It sounds simple, but learning about the procedure made me cringe. The day will start at 7am (early!). I'll be fitted with a (heavy?) metal halo looking object around my head with pins penetrating the skin to keep the halo in place. Sounds painful. I jokingly asked the nurse if I could put topical Lidocaine all over my forehead to help me deal with the pain better. She said probably not since the placement of the halo is unknown at the moment. With the halo on, I'll get CT and MRI brain scans used by the radiation team to map out the course of action. The wait for the final analysis and treatment will require some patience.
The radiation beams will target various points of the brain, which will most likely cause hair loss in those areas. After my first experience with hair loss, I have thinner hair and much more white hair. Even so, I don't want to loss what I have waited so long for. But the tumor is close to the ocular nerves, so further growth could affect my vision. Choosing between vision and hair is obvious, but hair loss is still hard to deal with. I can't do anything other than to suck it up and hope for better days ahead.
For now, as I wait to get a brain and spine MRI before determining the next chemo and radiation treatments, I wonder whether I have gotten the most out of life.
UPDATE:
Currently, I'm getting my spine radiated. Other than some soreness in my upper back, I'm dealing with the radiation fairly well.
Next Tues, after I finish the spine radiation therapy, I'll have Stereotactic Radiosurgery (SRS) for the tumor in my brain. The term surgery is a misnomer since SRS is really radiation beams directed at the tumor. It sounds simple, but learning about the procedure made me cringe. The day will start at 7am (early!). I'll be fitted with a (heavy?) metal halo looking object around my head with pins penetrating the skin to keep the halo in place. Sounds painful. I jokingly asked the nurse if I could put topical Lidocaine all over my forehead to help me deal with the pain better. She said probably not since the placement of the halo is unknown at the moment. With the halo on, I'll get CT and MRI brain scans used by the radiation team to map out the course of action. The wait for the final analysis and treatment will require some patience.
The radiation beams will target various points of the brain, which will most likely cause hair loss in those areas. After my first experience with hair loss, I have thinner hair and much more white hair. Even so, I don't want to loss what I have waited so long for. But the tumor is close to the ocular nerves, so further growth could affect my vision. Choosing between vision and hair is obvious, but hair loss is still hard to deal with. I can't do anything other than to suck it up and hope for better days ahead.
Hello, I am sorry to hear your news. Don't give up. I have been reading your blog and it has helped me accept my recent diagnosis of stage IV lung cancer, I am also a young Asian, non-smoking female. I haven't even started treatment yet. You have given me hope despite the bleak statistics. Thank you. Please continue your fight; don't give up hope.
ReplyDeleteHope - sorry to jump in here, but since you are new to this disease, I feel I must say something. Please ask your oncologist to get enough biopsy tissue for mutation testing. I am also a young non-smoking female, and (half) Asian. We are at a higher risk of having a mutation (I have ROS1. ALK and EGFR are others). Several of these have special drugs that can be very effective. Best of luck to you. I keep a list of other young bloggers on my blog (http://lil-lytnin.blogspot.com/). Each of those main mutations are represented on my blog roll, as well as people on chemo. I hope some of this will help you. I know reading other stories - like this blog here! - have been very helpful to me.
DeleteTori, thank you for reaching out, providing insight, and sending kind thoughts!
DeleteThank you so much for your comment. I'm so sorry to hear about your diagnosis. I wish you the very best and please write whenever you can.
ReplyDeleteI'm so very sorry to hear this. I hope they can find a treatment that works for you. May you find health in the new year.
ReplyDeleteHello ladies. Thank you for your comments. Tori, I am EGFR positive so holding onto hope that I respond well to treatment. I will continue to follow your blogs and will be rooting for you both always. All the best.
ReplyDelete