I didn’t cry the first month.
There wasn’t really anything to cry about; or perhaps there was, but it was all just masked by bewilderment and anger.
I knew that I was doing the liver radioembolization for a damn good reason. Some doctors thought that my immunotherapy wasn’t working, and that the tumors in my liver were getting bigger.
This could potentially stop that.
So I switched my care from Dana-Farber to MGH, who offered me this new treatment, and I was immediately so impressed with my new oncologist and surgeon.
My old oncologist promised me that I could never “lose him,” that I was just adding new people to the team now. One of the nicest things that he could have ever said to me.
My team grows, and hopefully the cancer does not.
You don’t think about the relationships when you think about cancer, right? Mostly you probably just think about the treatments and medicines, but the relationships with the doctors, nurses, infusion nurses, physician assistants, medical assistants and admin staff have all been such a huge part of my life for the last almost 4 years.
“You may not feel well for a while,” the surgeon warned me. “Perhaps some nausea, gastrointestinal issues, and you may feel like you have the flu, headache, and very tired,” he went on to explain.
But all treatments, immunotherapies or surgeries or what have you, have side-effects, and you have to outweigh the good with the bad. If this could potentially stop the tumors from growing, than it seemed logical to try it.
“I can get through it,” I thought to myself.
For the next four weeks I very often forgot that I was in pain because of cancer. I just plain forgot that the whole crux of the issue was the cancer. Maybe that sounds silly, forgetting the biggest thing that has ever happened to me, what is growing inside of my body, what I’m doing this all for.
But all I could focus on was how crappy I felt. And how isolated, lonely, and scared my days were (even though SHL and my parents have taken outstanding care of me). The doctors said that people could take weeks to heal, but they did find it was very rare that it would go on for this long (I am not being a “debbie downer” but my family will tell you that if they say, for example, 1% won’t feel well for an extended period of time, I will be in that 1%).
My best friend A came from Texas. I had planned a Greek lunch with my Mom, an Asian dinner on the seaport for Saturday night, a hike and juice or smoothie during the day, a brunch with local friends, and then going to the MFA to see the Matisse exhibit.
We had lunch with my Mom, and that was about it. Poor thing came all the way from Texas– I know to see me– but just saw the inside of my house all weekend. Because at that point I had a kidney stone that was just rearing its ugly head and wanted out, on top of the liver being inflamed. (A took such good care of me, making me grilled sandwiches and rubbing my back and we watched mountains of cooking shows together. She’s been through so much with me!).
Before that, about 5 days after the liver procedure, I was supposed to have an ultrasound to figure out why I still didn’t feel well, but when we got to the doctor’s office they took one look at me and put me on a stretcher and wheeled me down to the ER. My Mom was with me and we stayed there for about 24 hours while they did tests and waited for a room for me. Finally I was moved to a room where I stayed for another day and night and then was sent home.
So after A came to visit I went back into the hospital to have the kidney stone removed, about 17 days since the first liver radiation.
Two days later I had such excruciatingly bad stomach pains that my Mom rushed me back to the ER, where I was admitted for what I call “after-shocks” from having kidney stones. More pain meds.
Home. Home is where the heart is, until you’re home for 35 days, and then all you want is to be anywhere but home. Mexico, perhaps? Heck I would take Natick.
The last few days my Mom has been getting me out of the house; I’m still on pain meds but so not really able to do much without her, but we’ve managed to have lunch out and do some errands to get ready for our mini-golf fundraiser coming up on June 3rd!
(Shameless plug to donate here; all money goes directly to the Melanoma Center at Dana-Farber where they are working tirelessly to find more treatments and of course eventually, a cure): http://www.myjimmyfundevent.org/faf/donorReg/donorPledge.asp?ievent=1166643&supid=444457597. Click on “Give Now.” We are so appreciative of the kindness of Team Lozier and Beyond!
What do I miss, many ask? I miss my friends, so much. I haven’t felt well to have visitors or try and even keep up with conversations; when you’re in so much pain, on pain meds, loopy, tired and depressed even though you miss others, sometimes you just feel it would be too much. I miss Tulum and those amazing coffee smoothies that no matter how hard I try to make at home come out sub-par. I miss those hard, intense yoga classes overlooking the ocean with the little shooters of green juice afterwards. I miss having slumber parties with A at night talking about the Grammy’s and our married lives and cancer and all that other “stuff” that best friends talk about.
I miss my twin M who was here from Florida for some of the last good times that I had before this pain. My 40th surprise birthday, eating cake for breakfast, strolls down Newbury Street and dinner in the North End.
I miss going to work and helping people, feeling accomplished, feeling productive, schmoozing with my co-workers.
I miss days without pain, days without doctors calls and scheduling appointments (4 more to go before they do the next side of my liver in a few weeks).
It all seems so simple, doesn’t it? Those every day things that we all too often take for granted.
It used to seem simple.
No, I didn’t cry that first month. Now I cry almost every single day, waiting for the time when I can tell you that I have a pain-free day.
Please, please just read these words and know that I feel broken. Please, I beg of you, do not tell me that it will get better, that I can’t feel like this forever. I know you just want to help, but those words seem weightless right now. I know it’s so hard to know what to say.
I love you.
I wonder: What if I really am broken? What if they broke me? I long to see the gold; to know it is there. To know that broken does not mean in pain forever.