These words were written on the last of day of my chemotherapy treatments for PCNSL. I received the cancer diagnosis in October of 2008 and finished my course of high-dose methotrexate therapy at the Dana Farber Cancer Institute in Boston 15 months later.
The Goal is Reached. December 10, 2009.
Today I drove myself to the hospital for the first time and came alone for my final chemo treatment. There is an odd joy and sadness to this day that I’ve awaited for so long. Now I will be untethered from my IV pole, and disconnected from the healing but toxic fluid cursing through my veins from a brown covered bag. I drew an X on the block marking my last infusion on the giant calendar I have hanging over my kitchen table. There are 11 other Xs preceding it – each painstakingly marked every month to show progress toward the goal of finishing my chemo.
It’s almost Christmas and I have the spirit of the season, almost as never before. I have completed the medication regimen that rid my brain of its deadly lesions, which had caused double vision, hearing loss, numbness and burning on one side of my body and the inability to walk across the room without assistance. Whether or not I am cured, only time will tell. Many people with my illness relapse at some point, but young Dr. Andrew Norden thinks that I may be in that chosen number, that he and I and our huge dose of methotrexate may have beaten this formidable foe and won me a second chance at life.
I hope he’s right, with all my heart. I know that last Christmas Eve, while my relatives enjoyed our annual family bash at my sister-in-law’s big home, I was laying in my bed facedown, unable to muster the strength to change from my sweat suit into pajamas. A microwave-heated wrap was numbing the pain in my left arm so I could escape into the temporary respite of a merciful night’s sleep.
This year, I’m humming Christmas Carols while hanging wreaths in my windows and stringing lights and holly on the mantle. Throughout the last 12 months I have felt the presence of God spurring me on, holding me up, copiloting my every decision and easing the fear of losing my life on a daily basis. I am not a religious person. I attend Mass only sporadically and I have always been a doubter. And yet, I have not been alone in this struggle: A nurse’s aide in the early weeks at the hospital comforted me with my mother’s smile. I felt a hand in mine throughout the surgery that implanted my chemotherapy port, when no human hand was near. There’s always the possibility that the young aide’s resemblance to my deceased mother was coincidental, that the conscious sedation during the port procedure created the illusion of someone stroking my hand. But I don’t believe either scenario. That’s my choice and my solace.
Today my battle has ended, but not my war. I am cancer-free and they say I may resume a “normal” life. The life I will resume will never be normal, but I do not want it to be. Why should I go through the trials of tapping at death’s door, crawling to my feet and witnessing the struggles of those around me in the chemo chairs and hospital beds if this were not to change me. I may return to my job and family but I will not pretend that the brain tumor never happened. It was the hardest-ever test of my endurance and my spirit, and yet, in many ways, the greatest gift.
Like late night TV host David Letterman’s Top 10 List, here are the Top 15 Things I’ve learned from having cancer.
1) Love is most important. Having the love and support of friends and family is everything when you’re fighting the fight.
2) It feels good to hug. Going from a hands-off, non-touch person to someone who is constantly hugging and being hugged is wonderful. I had no idea what I was missing.
3) Ask. Be aware of your own treatment, including medications. Don’t assume the doctors and nurses always have it right. If someone gives you a yellow pill that’s usually white, ask why. Mistakes are made and you are your own best advocate.
4) Never wear a Johnny unless you are so sick that you cannot dress yourself. Bring a sweat suit or some nice loungewear with you for overnight hospital stays. I found the better I looked, the better I got treated. Or maybe it just felt that way. Dress for success in the business world – dress for respect in the hospital world.
5) Write it down. Keep a journal of your cancer journey from start to finish. If you don’t feel like writing when you’re having a bad day, don’t. It’s not a required chore, but putting things in writing does make them seem more manageable and less scary.
6) Love your oncologist. He or she is your new best friend. This person is not infallible, but if you don’t feel a huge sense of trust and admiration for your doctor, find another one.
7) Take your pills. As a person who wouldn’t increase my high blood pressure medication when my family doctor asked me to, it was hard to carry around a suitcase of multi-colored pills for daily use. But I got used to it. You will too. Meds can help you physically and mentally. You may need both, at least for a while.
8) Find a cancer support group. Mine was the Wellness Community (now the Cancer Support Community — MA South Shore). This is a place where you don’t have to “put on a brave face.” The people in your support group won’t tire of your litany of symptoms or fears as your friends and family may. They are in the trenches with you. Find a group and go there every week, even if you have to ask someone to drive you. And give it time before you decide whether you like it or not.
9) Keep busy. No matter how bad I felt, I did things, even if it was just checking my email or getting my sister to haul me into her car and take me for a ride. Those early drives were a godsend, just to look out the windows at normal people doing normal things. I envied them because they were functioning so easily in a real world, but it sure felt good to look at them.
10) Pray. I prayed out loud and often — sometimes for the strength to make it through another day, or to alleviate a symptom. I prayed hard before every chemo treatment and every MRI. I prayed to God, to Jesus and the Blessed Mother. You may have different beliefs, but faith in something higher than yourself can help get you through.
11) Set your goal on bedtime. One day near the beginning of my illness, a nurse named Sheila called to see how I was doing. I told her I was horribly weak and dizzy and could barely make it through the day. I told her that all I looked forward to was bedtime when I could escape it all. That’s when Sheila said, “Then make that your goal. Don’t think about next week, next month or even tomorrow. Just think about surviving until bedtime, and when you climb into your bed, you know you’ve achieved your goal again.” It worked for me.
12) Stay off the Internet. It’s fine to surf the Web or play Scrabble online, but don’t Google your illness. The statistics may scare you more than the disease, and most of them are out-of date. Trust me, your doctors know more than WebMd.
13) Remember it’s temporary! On my second chemo treatment, I had an allergic reaction to the anti-nausea agent, Zofran. In the middle of the night, I went to the bathroom feeling like something was wrong. I looked in the mirror and saw what looked like the Stay Puff Marshmallow Man squinting back at me. My eyes were nearly swollen shut and I was shaking all over. I thought about the whole year of chemo treatments that lay ahead of me and I sat on the floor and cried.
A month later, on the night before my next hospital stay, my friend Joyce called to wish me luck. I told her there was no way I could go through it again. She said, “Listen to me, even if the worst happens and you get as sick as you did last time, it’s only temporary. You will be back on your couch holding your dog again in three days. You can endure anything for three days. Don’t panic, it’s temporary.” Out of all the advice that people and books gave me through the battle, I think this helped the most. And incredibly, I was never sick or nauseated again during another treatment.
14) Write the good stuff down. Since I am not the most “positive thinker” in the world, in fact I can be pretty negative, I would write down any promising statements from my doctor and read them back later when I would start to give in to fear. I wrote them on scraps of paper — things like “My goal is to cure you.” “Your tumor is no match for my methotrexate.” “Your cancer is highly treatable.” These few remarks from my oncologist were like lifelines in a sea of uncertainty. When your doctor gives you hope, write it down and reach for it when you need it.
15) Bring survival gear. If you have to stay overnight in the hospital, bring a laptop, cell phone, ear plugs, and an eye mask. You’ll keep your mind active during the day and be able to sleep at night. If you have to spend an extended time as an inpatient, make your hospital room look a little like home. Bring your favorite quilt or comforter, your pillow and some family photos. When you wake in the night and see your things around you, you don’t feel as much like a stranger in an alien land.
The end and the beginning.
So now this chapter of my story ends. I don’t know if there will be a sequel. I hope not. I will need to make decisions about the next step in my journey to the “new normalcy” – whether I will go back to work full-time or help my daughter raise my grandson. But I know that one aspect of my life will always be to reach out and take the hand of others who are frightened and alone.
I have been to the bottom of the well, have heard the laughter at the surface where real-world people were living real lives while I could only stretch out my hand to beg them to pull me up. And when the ladder was lowered to me, I climbed it, one rung at a time, slowly, sometimes slipping back a step or two, but always pushing forward, keeping my eye fixed on the light that knifed through the darkness leading the way out.
I had brain cancer, but my head is clear and my life is intact. The neuropathy on my left side is still there, my ears still echo and my left foot and knee still burn. But I guess there are worse things than being a red hot mama at 56 years old.
If you are facing a battle with cancer, you are already a survivor, and no matter how hopeless you may be feeling right now, remember, your life isn’t over, you just have to fight for it.
Update 4/3/14 — I am now 5 years cancer free. I work three days a week as the head writer at Jack Conway Real Estate Company in the Boston area, and I take care of my two grandsons, Ben, 5, and Will, 3, on Mondays and Fridays.
I now have MRIs every six months, and the last one on 3/12/14 was blissfully all clear! I am enjoying my phenomenal second chance at life immensely and am happier than I have ever been as a wife, mother and grandmother of three beautiful little boys.
Marie