I have received a lot of questions about my cancer and the treatments I have received, figure I will address some of them here.
” Does it hurt?”
Great question, one many people sidestep. Yes, in the beginning, I was quite ill with fever and night sweats. The mass on my neck was large and it hurt like hell. I have the dubious good fortune to have cancer in lymph nodes now they only hurt when my immune system is attacking them.
” Is Opdivo like regular chemo?”
Thank God, no it isn’t! Opdivo has side effects, but I still have an immune system. I no longer need to wear a mask to protect myself from other people who might be ill. I go to work and out in public freely. For the record, my two cycles of traditional chemo kicked my rump.
” Is Opdivo expensive?”
Yes it is, drug companies naturally expect to seek profit after the huge sums of money they put into research and development. BMS does offer assistance to patients that will pay for the drug which is generous. I am also treated at Mass General Hospital, and top level care isn’t cheap. I can tell you that MGH runs like a well-oiled machine, care is uniformly great, people are very nice to patients.
” So how are you feeling now”
How I feel depends on my tumor load, the lower the load the better I feel. Usually what happens is cancer will attack a node but my Killer T cells, activated by Opdivo will swoop in and get busy killing cancer. When this process is occurring I run low-grade fevers, have flu like symptoms and some pain as tumors die.
” What are Opdivo side effects like?”
Side effects can vary with each infusion. Mine include mouth sores, joint and muscle pain, dry eyes and fatigue. I have also noticed mood changes when I first started treatment. My thyroid no longer works and I take Levothyroxine to manage things.
” What is your day at the cancer center like?”
We drive into Boston, park (MGH offers reduced parking rates for patients getting infusions, ask at the chemo center). I check in, weight and vital signs are taken. I get asked if I’m experiencing pain or fatigue. Then I head into the suite dedicated for people with chemo ports. My nurse assesses my port and the skin around it, cleans it with special swabs. We both wear masks while doing all this. The port is accessed with a special hooked needle, they check for blood return first and then draw all my blood work for labs. Tip: plan your wardrobe so you have shirts which are easily port accessible.
Next up is a visit with either my Oncologist or my nurse NP. We sit down and review the past two weeks in terms of my side effects. They check my neck, under my arms and press on my liver. My ankles and legs are checked for swelling. Scripts are refilled and then if my labs are good the order for my infusion gets sent upstairs.
Then we head to the 8th floor, I get my warm blanket, water bottle, and pillow and settle into my chair. My chemo nurse checks in, asks me health questions and starts a saline drip. Once my Opdivo comes up from the pharmacy, two nurses do a double check medication verify and then the Opdivo is infused. The entire day from start to finish usually takes 4-5 hours. Btw, MGH offers constant snacks, fluids, and sandwiches at lunch time.
“So how big is your lung tumor now?”
What is funny about all this is they didn’t really see a tumor in my lung and thought at first that I had Lymphoma. The staining tests and a 3D mammogram showed that the lung was the primary site. What has been suggested is that my immune system might have killed the original tumor. Unfortunately, not before cancerous cells escaped into my lymph system.
“How long will you keep receiving treatment?”
My cancer is in my lymphatic system which means it is metastatic and won’t be cured so I will be always in treatment. I will continue to seek care until the pain of living outweighs the pleasure I take in my life! Quality of life matters to me, a pain filled existence is not a life I want! This is also a question I don’t need to decide now thank God!
” Do you think about dying all the time?”
Yes, at first I did! The first few months after a cancer DX are devastating for patients and their families! As time has gone on I am slowly adjusting to ” the new normal’. There are days I can think about things besides my cancer. I look for opportunities to laugh a lot. I am keenly aware of each passing season. Do I cry? Yeah of course I do! However, those times are thankfully brief and I have the attention span of a squirrel so it’s easy to distract me :)
” What can I do to help you? “
First off, just be yourself! You are my friend so obviously I like you and want to hear about your life! Please, distract me with stories and pics of your family, pet, vacations whatever! Humor is also welcome, including jokes about my cancer. All my life I have loved good plays on words and laughter, that isn’t changing now. Please, kill me with your jokes ;)
Seriously, and this advice goes for all cancer patients, if you want to help, offer! Many cancer patients don’t want to ask, they don’t want to be a burden to others. Going for a cup of coffee, offering to pick them up from treatment, a frozen meal or two. There are ways to show you care that isn’t expensive and don’t involve huge time commitments.
That’s about it for now but please, remember, no question is stupid and I don’t get easily offended ( unless you insist I use a Windows phone ;) lol!