Sunday, September 4, 2016
Did you think I was sick or dead? Who could blame you - it has been a long time since I've written. I'm not even sure where I left you in this grand saga of life, death, and daily trivialities.
I'm here but my iPhone has died. I've had an iPhone since they first came out in 2007, before diagnosis, and I've faithfully bought one every 2 years. I have been transferring everything over with each new purchase. And, my 6+ died, data gone, pictures gone, memories gone.
I'm still here, without my electronic helper. I do remember having a PET scan sometime this spring, which came out clean. NED, nada, no cancer. Lightening luck struck again.
It was last October 2015 that cancer had exploded through my system: abdomen, liver, many lymph nodes; it even creeped into my lungs. I thought my final destiny had arrived. I was calm at the thought of relapse, not freaked out or upset. My stomach dropped, and I knew what was coming, but I felt like I could have good luck again, which I did. Kadcyla entered and cleaned up the cancer like an OCD person cleans his hands. Scrubbed raw, no visible cells left.
Six months later, when what is now chronic pain intensified, yanking my intestines and kicking my ribs like a petulant child, I knew it was cancer returning and the Kadcyla giving up. Hence the springtime PET, which by the way, I had to fight the insurance company to get. I not only thought it was cancer returning - I was absolutely certain. I actually told people cancer was back, before I knew it was. I had no doubts at all, and started doing my planning again, refreshing my death papers, rewriting passwords, etc. I finally got the scan approval.
The PET showed I was clean.
I was shocked. I still had the mystery of the pain, which caused emotions I'm not proud of. Like frustration and anger. Yes, I was actually angry that I did not have cancer. I was mad that I didn't know what was going on with my body. I was embarrassed that I fought for a test that I didn't need. I was petulant when I told my doctor, "Since I don't know when pain is cancer or nothing, I'm not even mentioning it anymore." He gently said, "You have to."
I know it sounds crazy, to be mad at good news. I couldn't admit it to anyone, and I couldn't figure it out for myself. Given time, all I can come up with to explain this fury is when you wait for something for years, when you know what your fate is supposed to be and you believe now is the time - you can feel upset to discover you are wrong. Even when it's something horrible like cancer spreading.
I also questioned my entire place in the cancer community. Am I even a cancer patient anymore, really? I go in for chemo every three weeks, like a cancer patient. I have pain like a cancer patient. I have a port, I have fatigue, I have nausea and constipation. I am on my 9th chemo regimen. Look at all I've been through. But I don't have cancer now. I look healthy, I have more energy than ever. I have been NED almost as long as I've had cancer. So, where do I fit in now? I'm healthy AND sick?
What if I'm on the leading edge of people who survive metastatic breast cancer, thanks to immunotherapy? Doctors now say it is becoming a chronic disease, and perhaps that is so in my case. I was close to death, more than once. I never want cancer again, of course. And yet, in a strange way, my identity has become tied up with this disease, and in waiting to die. What if now I have something controllable, and its no longer a certain death?
Who am I then?
I felt angry: for not having a "place" anymore, for not being able to read my body, for not even being certain I did have a terminal illness anymore, for all of it. I was so angry - and so unable to explain it - I stopped blogging, stopped posting on facebook, stopped reading emails, stopped thinking.
I settled back to my life. The anger dissipated and I started to understand my feelings more. The pain lessened too, the meds worked better. So, I did household chores: I cleaned an organized my craft room. I painted and regrouted a bathroom, and painted and scrubbed the kitchen, things I've not been able to do for half a decade. I now have weekly hair blow-outs, even though I am still mostly at home. I get a monthly "art box" where I get a project to do. I turned my back on cancer, as much as I could.
But I needed to find a way to feel useful. I also need to make some money, so I am now crafting items to sell. This is complicated: I have to spend the money (a lot of money) to make the items, then once I get enough I have to figure out exactly how to sell them so it doesn't cost me too much or I can even make a profit (which looks less likely each day). Margins are already thin. But it is an interesting problem. (No, I don't want to do Etsy or eBay - paypal takes enough!).
I have written out a schedule of things I want to do, including some writing. I've had a booklet planned for years, designed to sell that I've never sat down to write. I also need more household things done - porches cleaned, flowers planted, weeding. I am trying to be productive, as if I had just retired early and wanted to be home instead of working.
October is coming and there are editorials to write. I am trying to get my chemo-addled brain functioning - I do a puzzle every day. I'm trying to get up at a more reasonable time. I am trying to remake a life that I'd previously given to disease. I still live for today, and appreciate each beautiful thing that happens. But now, I think about the future just as you healthy people do. I have made reservations to take my son and his wife to Vegas for his 30th birthday. I wonder who will speak at my younger son's graduation in 2 years. I am happy to hear that my older son and his wife will try for children in a year or so, and I even freaked out thinking that their child may not be in the elementary school down the street, so I can pick her up at 3:00. I am thinking that if we have money left when my son graduates college, my husband and I will take a trip somewhere we've never been. Maybe Europe. Maybe Australia. Maybe Bali.
I again worry that my husband, who is 11 years older than I am, will die first.
Normal. I'm not angry now, I have accepted my place, once again.
I wonder though - if Kadcyla stops working and cancer comes back, how will I feel? How many feet into normality do I step?
As I said above, my iPhone died, it just completely bricked. I couldn't get anything off of it before it went, and the genius bar people couldn't help me. I lost almost 8,000 photos, and all my contacts, my blog ideas, daily reminders. 9 years of my life gone.
So I have a choice: I can mourn what is in the past, what is lost, and maybe be angry that what I thought would happen did not. Or I can acknowledge it, take a deep breath, and start fresh.
Five years with mets, and I'm starting fresh.
Thank you to those of you who use the Amazon box to the right to start your shopping. It helps me greatly. If you don't know, just start your search for anything on Amazon on my page and I get a small percentage of what your purchase.
Posted by Ann aka ButDoctorIHatePink at 6:06 PM