I sat in a doctor’s office while the urologist calmly and rationally drew me a picture on exam-table paper of where the cancer was and what we would do about it. I sat calmly listening to him, but I definitely was not rational. I could not think straight.
What he didn’t know was that in those few minutes of our conversation, I had been transformed — from a busy, healthy person to a cancer patient who was about to step into the unknown and perhaps closer to the end of the line. He has no idea what is really going on inside of me, I thought, so how can he take care of me?
When our visit ended he said, “Well, by our age, we all get something. This is yours. Me, I have a bad back.”
But cancer is different. So is every serious illness. Walking back from that visit, I decided I would try to use my experience to show doctors and others what it was like to have cancer and to be a patient. I started by trying to describe how cancer shakes one’s sense of self, and that became the first entry in this journal.
I have always thought of myself as fairly cool. I am an active, walking-everywhere, traveling-to-interesting-places, non- (well, almost) TV-watching lady. Then I heard I had cancer — probably treatable, and even better, curable. And now I am none of those other things. I cannot exercise except for some stretches and short walks; my trips are cancelled; all my conversations seem to be about my health or lack of it. Oh, and I watch “Storage Wars” on cable TV, over and over.
I have so much time on my hands that I am boring myself. Even my dogs are finding me less interesting, missing their long walks. I miss laughing.
I used to talk to gym friends about politics, art and going to the ballet. Now I talk to my doctor about going to the bathroom. When he asks, “How are you feeling?” how do I tell him, “Uncool,” and have him realize this is serious?
They are so young, the doctors doing a residency in this specialty. “Where did you go to medical school?” I ask, and I learn they went to Harvard, or Georgetown, or George Washington University, or other satisfactory places. “Well, that’s good,” I say, while thinking, “Who was president when you were born?” Oh, dear.
My friend said I should ask how the bars were around their schools. If they say, “I was too busy studying to find out,” it is good news. I ask this once to a young resident, he replied, and then I tell him why I asked. “You got me,” he said. The bars in LA, he had answered, were just fine.
“No one wants to have an urologist,” I observe to one of the residents. “Most of us want to have a family doctor, lots of us want an obstetrician, a few want a plastic surgeon, but no one wants a urologist, you should know this.”
“But if we need one, we are very glad you are there,” I quickly tell him. “We are glad to hear that this is a special specialty, for the best and brightest.”
I went to confession. I had not gone since before Vatican II, so the timing seemed right. The priest, Father O., new to our parish and wonderful, said God forgives us our sins, but the sacrament of reconciliation celebrates grace and forgiveness. Father O. said he goes twice a year, sins or no.
My penance was an “Our Father,” and he asked if I remembered the Act of Contrition. I did, but it evolved into the Memorarae, “despise not my petition but in thy mercy hear and answer me,” which I have been saying at every stop light.
A lot of nuns are praying for me. According to Jennie, one of my two daughters, her college roommate has all of New Jersey praying for me. My primary care physician is praying for the cells to reverse themselves, and she is a very good prayer. A nun from Syracuse is up for sainthood and needs a miracle to make it all the way, so I have been praying to her. I think I have my bases covered.
In religious circles there is a joke about a man about to drown in a flood. A car comes by, offering to take him to dry land, but he says, “God will provide.” The waters rise to the second floor of his house and a boat comes by, offering to take him to safety. “No,” he says. Then, when the water gets so high he is on his roof, a helicopter tries to save him, but he insists that God will provide. When he drowns and gets to heaven, he asks God why he did not save him, and God says, “I sent a car, a boat and a helicopter.”
I, too, had three chances. When I first saw blood, and going to the bathroom hurt, my doctor said to go to the ER and let’s see if it is an infection, the most common cause. The physician assistant at the hospital gave me a prescription for an antibiotic and said, “See a urologist.” But I got better with the antibiotic, so I followed up with my doctor because a urologist was bound to do something awful to me, and it was probably just an infection.
I looked up “blood in the urine” on the Internet and read, “This must be attended to.”
At a solidarity meeting, Betty said, “I saw a drop a blood, just a drop, found out it was kidney cancer, had surgery and now I am fine.”
I kept treating myself with lots of fluids and asking my physician, often when I was traveling, for a prescription for urinary tract infections. When I mentioned the blood during a physical, I made light of it, slipping it between “I have been eating more vegetables,” and “I think my eyes are getting worse with age.”
I told my GYN that when I got a urinary tract infection, I saw blood, and sometimes after spin class. “At your age, that happens,” she said. “Don’t stop spinning, it is great exercise.”
When I told my boss, a nurse, she asked, “How long have you been treating this as an infection?” When I said two years, she said, “Oh dear.”
I am a nurse too, or at least used to be. I should have warned myself.
HOW I FOUND OUT
I thought I was having lots of urinary tract infections, until we did a culture and no germs were there.
I saw a urologist who said my symptoms were most likely from stress, so I should take a vacation and drink less coffee, but to get a sonogram and “give us a sample to be on the safe side.”
The sonogram showed something was there.
“These tumors are very common,” said the radiologist who looked at the sonogram. “Take it out, get checked every few months for a few years, and you are good to go.”
But there were cancer cells in the sample.
“Get a CAT scan, and schedule surgery to get it out,” said the urologist. “All tumors have some cancer cells, so it could be minimal, but let’s find out.”
I waited two weeks to hear cancer was in the lining of the bladder but not the muscle.
“It could be hiding. I am haunted by the faces of patients who had hiding cells, so let’s dig deeper and biopsy again,” said the urologist.
“OK,” said I, who used to be afraid of anything a urologist might do.
Let’s do it and wait some more.
So how did I get this cancer? I don’t smoke, at least not since everyone did. I don’t drink diet drinks or eat processed foods. I exercise and have a positive outlook on life. I think it is those X-ray machines in airports. I told this theory to my recovery room nurse, who said I shouldn’t blame it on airports. He asked: “Were you ever exposed to well water? It might have had arsenic.”
Now the research is telling us that smoking — ever — seems to be responsible for a lot of bladder cancer. So, maybe, because of bad decisions in my 20s, this was my fault after all.
Between procedures, I went on a short business trip and loved every minute: driving to the airport, getting a newspaper, standing in line to board, finding a nice restaurant. At my meeting, no one looked at me with sad eyes or had any idea of what was going on in my bladder. “How was your trip?” asked daughter Elizabeth. “Wonderful,” I replied, “I felt so normal.”
“Well, you are normal,” she said.
“I sometimes don’t feel normal when I think of what is going on,” I said.
She looked at me and said, “Then don’t think about it!”
So I stopped thinking about it most of the time, and she is right. It helps me feel normal.
I make my doctors cookies. I want them to know that I am not just the 2:15 appointment, but someone. I want them to know I appreciate their gifts but that I have gifts, too, even if it is just mixing butter with sugar and flour and putting it in the oven. I want them to look forward to seeing me and what I bring, to give me full attention. It always worked for subcontractors when we had our house remodeled. I am hoping it works on doctors, too.
WHAT PATIENTS WANT TO KNOW
The cancer center websites tell me a lot: the warning signs, probable causes, cell structure, treatments, percentages. But the National Institutes of Health (NIH), the Cleveland Clinic, Johns Hopkins, Sloan-Kettering, Dana-Farber — they don’t tell me what I really want to know: What will happen next? Will it hurt? Will it work? What then?
My friend Lawrice said I should ask, What am I supposed to be learning from this?
So, OK, what have I learned: I have more friends than I thought and they are better friends than I thought. You cannot do enough sit-ups to protect yourself from cancer. Feeling well does not mean being well.
I wonder if this is what she meant?
“I am really a lifestyle urologist,” says my doctor (something I wish he had told me before operating on me twice), “so I am sending you to two specialists.”
One is an oncologist who specializes in blood and urinary cancer. I am a bit concerned about this because those cancers don’t seem to have much in common, but she did a fellowship at NIH so that is all right.
The other referral is to a urologist who specializes in cancer. I am concerned that is a euphemism for cancer surgeon (which it was), and surgery is not my personal treatment preference. But he was kind and competent. Just what I needed.
A classmate’s husband is a cancer guru and promised to look over my treatment plan. A friend came through with the name of a personal trainer who has recovered from cancer and helps others to do the same. The Cancer Hope Network gave me Zooey and Anne, lovely ladies who have been there, done that, with bladder cancer. I am assembling quite a team.
As a student nurse, a real nurse, as a visitor, I have passed many doors labeled “Oncology” and each time, yes, each time, I have said, “Not me, thank God, this is not for me.” Today it was for me, and I was happy to get the appointment so quickly. The office had dim lights, soft music and there was a waterfall. The oncologist was warm and welcoming and sympathetic. But still it all meant CANCER.
So it is not an infection, not stress, not a benign tumor and not an easy kind of cancer. It is the bad kind of bladder cancer (who knew there was a good kind?). Three doctors explained it to me, and I think I finally get it, although I acted like I did the first time. I say, “Take it out, get rid of it, I hate this troublesome bladder.”
But then I think, maybe if I pray hard enough, a miracle will happen and it will go away by itself. But no, that won’t happen. I need to be optimistic that surgery will go well, and I will soon be better.
So there you have it, all the stages: denial, anger, bargaining and finally acceptance. Guess the books are right.
Trish was in my nursing school class and now does mind/body work. On the phone, she asks, “What is troubling you right now?” I say, “I think of surgery as an assault on my body, a violent act about to happen.”
For 30 minutes, she guided me to realize surgery will be healing, not damaging. “You must talk to your body,” she said. “Tell your circulatory system to get ready, your immune system to stay strong. Tell your urinary system you are sorry it is hurting. Tell them all you will need them to get well, that you love them and that you will all get through this. This works,” she says. And I believe her.
Finish this, finish that. Cancel this meeting, reschedule another. Find a substitute, find a gift to thank substitute. Tell her, her and him. Buy lightweight books and lightweight robes. Change dental appointment. Make list for wonderful sister, Suzy, who will be coming from Wisconsin. Google “gas pains after abdominal surgery,” and buy what is recommended. Get pre-op prep and post-op pain meds. Buy and send birthday presents, order Christmas presents. Pack a bag, repack. Go to church to get blessed. Rest. Reassure everyone. Thank people for praying.
Bladder cancer has become a full-time job.
Here are my goals for surgery:
Don’t get an infection
Stand and walk that night
Walk a lot
Get my digestive system working quickly so I can get home
Leave cancer behind
Here are my observations:
I always thought that ICU nurses cared for machines, not people, but turns out they are the best, most compassionate nurses in the world. I had the same thoughts about operating room nurses, and the best nurse I met was an OR supervisor. She took charge of making sure I did not have pain after surgery. Some things you have to experience to believe.
All the quality policies in the world cannot make a quality hospital. Nurses had policies for doing a nursing assessment on each 12-hour shift, but only one nurse did so. All staff must wash hands entering a room, but only 1 in 3 did. When I asked a nurse to wash her hands, she gave me some look!
Travel and temporary nurses should be banned. They did not know the equipment or the policies. Nurses and aides who worked there the longest were the nicest, most caring, most competent. Longevity matters.
A teaching hospital is full of teaching. My first morning walking, I opened my door to the sight of about a dozen green-clad med students in short white jackets, spilling over the chairs in the chart room like puppies. I thought I was in an episode of “Gray’s Anatomy.”
The residents are so earnest, even when I tried to coax personal information and gossip. One of them, the most solemn, said very matter-of-factly when I had a discouraging moment, “Hey, this is the biggest surgery we do, and you are doing great.” It was the best hug I could have had.
Doctors don’t talk to nurses. These groups are on parallel paths, caring for the same patient. I would say to a resident, “… as I told the nurse, this is happening,” and it would always be news. They work in teams, but doctors and nurses are not on the same team. Makes me wonder what team I am on.
Infections happen, despite all efforts. Five days after discharge, I was in the emergency room for 10 hours, then readmitted to get IV antibiotics.
It takes a village to recover from surgery. Every day in the hospital, I was visited by the residents on my service and a team of pain specialists. My daughter Elizabeth came daily, usually in the evening to play a few hands of gin to help me fall asleep. My wonderful sister Suzy came to take me home, and she never stopped cooking and doing. Her custard was amazing.
Daughter Jennie left her Florida school where she teaches — and her dissertation — to spend a week, ordering clothes and supplies and taking me on walks outside. Home-care nurse won’t quit until I get the hang of self care. Husband stepped up to all the chores. I told friends we did not need meals, but several brought soup, and each bowl was wonderful. I am not used to needing people, but needing I did, and the help was not only welcome and humbling, but healing.
WORDS TO LIVE BY
So many lovely and funny and touching cards and notes have come. But my favorite words came from a catalog: “Life is not about how fast you can run or how high you climb, but how well you BOUNCE.”
I am back in surgical admitting for the fourth time; I am getting a port for easier chemotherapy. I see some familiar faces, including the lovely lady who, my first day, had just graduated from probation to full time and who had taken down my information each time. (Actually she collected the exact same information each time — what are electronic records for?)
Everyone is nice, as always; everyone knows what they are doing; everyone went to good schools (I always ask, and I quiz the radiologist on bars in my hospital’s neighborhood). As I am wheeled into the room, my nurse and I spot a dozen blue-suited young men and women.
“FBI?” I ask the nurse. “No, looks like Secret Service,” he replies. Turns out they are med students interviewing for residencies in radiology. “Good luck,” I say to them.
I had been promised music during the procedure and that it wouldn’t hurt a bit. The music is Bing Crosby Christmas carols, and I tell the radiologist a surgeon would not stand for this. But they were right about it not hurting.
PREPARING FOR CHEMO
Monday is my first day. Daughter Elizabeth is coming with me, and we will be bringing catalogs and an iPad for shopping, because it is “Cyber Monday.” We have done other things to get ready; for example we packed snacks and books and hard candies from sister Suzy, who heard that chemotherapy can leave a bad taste. Elizabeth’s friend, Richard, who is an oncology nurse, gave me Chemotherapy for Dummies, which I have read carefully. I am wearing Betty’s Cancer Survivor bracelet because she is cured and does not need it, and Jennie’s Fighting Bladder Cancer bracelet which has the official bladder cancer colors: marigold, blue and purple. I have asked my sodality to pray that the chemotherapy will be healing, not hurting.
Yesterday we stopped by church to get a blessing for this next stage of the process. Father O. proved to be a powerful advocate with the Almighty before my surgery, so I am sticking with him, and I thanked him with blueberry cookies.
I have been listening to and will bring an imagery/visioning/meditation tape. I decided against the ones with warring themes — little soldiers or motorcycle gangs battling cancer cells — in favor of a tape about a glowing light and being surrounded by loving people from my past and present.
I changed my toothbrush, as you should for any big occasion. I also had my hair done. Looking my best for a new audience seemed the right thing to do.
Yes, I am ready.
ROUND ONE, DAY ONE
Waiting seems to be the permanent speed in oncology. Everyone is gentle, and no one is in a hurry. Good thing I left my type A personality behind months ago. We wait for blood work, then to see the resident, then to see my oncologist,
Blood work shows red cells up, so I can cut back on the iron pills. I am able to advise the resident what to do for her twin boys who are teething. Dr. A-C is informative and caring, and I am glad Elizabeth can meet her. Elizabeth says, “I feel well-informed now.” The doctor writes me a prescription for an antinausea drug that she says I will not need.
Once in the infusion room, sunny and surprisingly cheerful, my chemo nurse explains everything and gives me hand-out information about the drugs and side effects.
“Psst,” says Shirley, my neighbor to the right, “I have found it best not to read those things. They only put ideas in your head.” So I put it all away and start a great mystery novel.
Elizabeth stays for five hours, and we eat our way through the treatment: graham crackers, nuts, turkey sandwiches, soup. We have so much fun talking that we forget to cyber-shop. When it’s time for Elizabeth to get ready for her job, Debbie from my office comes to sit with me, and she swears it is not bringing up past bad memories of her own chemotherapy (which she did without taking a day off). My neighbor to the left shops feverishly on his computer. “Yes!” he yells, “I just got a $185, complete Nerf war game for $56!”
The drugs start. First I get saline for hydration, then two antinausea medicines and a steroid to boost everything, then Drug No. 1 and then No. 2. For each of these big-boy drugs, I listen to my imagery tape and have a vision of being surrounded by friends and family in Cape Cod with a warm light coming from a fountain that flows into every organ, every cell.
I did not know how I would feel: weak, sick? I had told myself, I will feel exactly the same. But what I feel is good. It’s working — all of it, the therapy, imaging, the prayers, the support (I got over a dozen “You go, girl” e-messages during the day), and the belief that all will be well.
There is nothing humorous about chemotherapy’s side effects, but there are some heartwarming signs: Elizabeth brings home a thermometer and saltines. Wonderful sister Suzy researches integrative care solutions and suggests “sea bands” used for sea sickness. Jennie orders them — and everything else Amazon has for nausea. Husband shops for oyster crackers and ginger ale. Lawrice brings chicken soup and good company.
Wonderful brother Peter sends the most unexpected thing: ice cream. I think mint chocolate chip may be chemotherapy’s equivalent of penicillin for strep. Jill, who has had chemo twice, promises to walk me through this, and she promises it will not feel like this every day.
My insurer had a nurse manager call; she mostly talked about herself but distracted me for 15 minutes. And the dogs won’t leave my side, but that might have to do with the oyster crackers I generously hand around to all of us.
My college roommate, Margaret, takes me for my second chemotherapy. She is a labor and delivery nurse; I knew she would be helpful. She gets a phone call right when we reach the treatment room. “Is it OK to use a cell phone here?” she asks the infusion nurse. “Of course,” is the answer. “There are no rules.”
In other words, what happens in oncology, stays in oncology. It’s true. Where in other parts of the department doctors rule, here, (fabulous) nurses rule. An example: Meg, my nurse, hears that I have been feeling like crawling in a hole, and she asks to see what I have been prescribed. She rearranges the order and times of the medicines and says, “I think this will work for you.”
There is a friendliness here you never see on the Metro or at the grocery store. “Your purse is great,” I tell the wife of a chemo neighbor. “$75 Vera Christmas item, my sister got it at an estate sale for $1!” she replies, and we spend 20 happy minutes talking about bargains and how to find them. “Love your dress,” calls a lady who is leaving for the day. “Vermont Country Store,” I shout across the room. “They mostly sell candy and nightgowns, but they have three dresses, and I got all three!”
Around the room, lots of pens and papers come out, since everyone here is looking for advice, any advice.
– See more at: http://www.chausa.org/publications/health-progress/article/september-october-2013/excerpts-from-julie’s-journal#sthash.LvIFMQBe.dpuf