Grace is a lifelong singer who was first diagnosed with anal cancer in 2013 at the age of 70. Since then, she has undergone treatment for a number of recurrences. Most recently, after corresponding with Cancer Commons, she enrolled in a clinical trial testing a type of immunotherapy treatment known as CAR T-cell therapy. Now, she has no evidence of disease.
Grace called us from her home in Houston, Texas, to share her story:
Q: How were you initially diagnosed?
A: I noticed a small amount of blood when I was in the bathroom. I wasn’t too alarmed because I had dealt with hemorrhoids in the past, but it kept happening every so often, and my gastroenterologist was concerned. I finally went to an appointment with a doctor recommended by a member of my book club who had had anal cancer.
I’m Catholic, and I sing Ave Maria any time I have any kind of exam. It’s my prayer. It calms me down. This doctor was Jewish, but he didn’t seem to mind too much (laughs). At the end of the appointment he told me, “I’m sure it’s nothing, but better safe than sorry.”
His office said they’d get back to me by the following Tuesday, but they didn’t call. It was hard to get a straight answer, a very unpleasant and frustrating series of phone calls, and finally they told me it was malignant. This went from being “I’m sure it’s nothing” to “I don’t know if I can save your life.” Finally, they called it stage one.
Q: What was your initial treatment like?
A: My initial treatment was chemotherapy with 20 rounds of radiation. My daughter had planned a trip for us to go to Italy, leaving on December 26, and my treatments were scheduled to end on the 20th. But it turned out to be a total battle; at the end of this treatment you’re just burned to a crisp.
On the 26th, I was in so much pain, I could barely walk, much less travel. My son-in-law, who is the sweetest human being in the world, came and told me, “I don’t want to go to Italy if you can’t go.” And so my daughter Jessica, whom I affectionately call “Chop Chop” for obvious reasons, said, “I’ll be right back.” She ran to the other room and came back in a little while later and said, “Ok, I’ve changed your reservations. Chop chop, you’ve got to get ready to meet us in Rome on the 30th.”
So guess what? I did end up going. I was met at the airport by a wheelchair. I flew over, shivering, in four layers of clothing. I slept the whole way, but within two days of being there, I was walking four miles a day and feeling fantastic.
Q: How did things progress after that?
A: After the trip, my radiologist told me I was cancer-free and should never have to worry about this cancer again. About eight months later, I went in for a colonoscopy and was told it had returned. I needed to have an irreversible colostomy. Before that could happen, I was told I had a suspicious spot in my lung. My god, that was overwhelming. The growth in my lung was removed and was determined to be malignant.
But before I went ahead with the colostomy, my daughter found a clinical trial in New York testing a new treatment for people with metastatic anal cancer who are not ready to have a colostomy.
Q: Did you head to New York after that?
A: Yes, but, it was very odd because when we told my radiation doctor about it, he said, “Oh, those guys are my friends, I can get you in.” I don’t know why he didn’t bring it up earlier. So the next month I went to New York for a series of tests, and they couldn’t find my cancer.
Before going to New York, I had gone on a trip to France and had visited these baths in Lourdes filled with holy water. And when I came back, nobody could find the cancer, so I wondered if I had actually experienced a miracle.
For six months after that, I went back and forth to New York, and finally in May of 2015 they found that the cancer had indeed come back. They asked me to come up and spend a month there while I received brachytherapy treatment. This is where they insert small radioactive seeds directly into the tissue to deliver radiation treatment.
Every week, they would put me under general anesthesia to receive the treatment, and then I would wake up and walk 25 blocks back to my hotel. My husband and I actually had a wonderful month; I would go down to Broadway and sing at Birdland on Monday nights. It was like a second honeymoon.
Q: That’s wonderful that you were able to turn that month into such a good experience. How did the treatment go?
A: When I went back for my scans, they told me I had no evidence of disease, completely clean. So I came back to Houston to live my life, while still periodically going back to New York for exams.
But on one of my trips to New York back in 2017, the doctor said he saw something strange that he wanted to biopsy. My radiologist back in Houston warned me that I’d become totally incontinent after a biopsy there. But eventually the new growth was big enough that my surgeon in Houston told me, “Grace, I know this is cancer.”
Q: Another recurrence. How did things go this time around?
A: I went back to New York for a biopsy and was told they’d have to do a complete, irreversible colostomy. My husband said, “Grace, we can’t do that up here. I think it’s overwhelming to do that living in a hotel.”
So I called my radiologist, who said there’s only one cancer surgeon in Houston capable of operating at a site where I had had two different types of radiation. I went to see him, and I’ll tell you what, when he walked in, there was an instant antipathy between us. He was not happy when I sang Ave Maria during the exam. I don’t like having doctors I don’t have chemistry with, but since he seemed to be the best option, we went forward.
Q: That must have been unpleasant.
A: Yes, and the plastic surgeon he recruited to be part of his surgical team was as dour as he was! Before the surgery, the plastic surgeon told me just how difficult he thought it would be for me to recover from the surgery, that it could be really horrific.
So I look at him and I say, “Do I have a choice?” He looks horrified and says, “You have cancer!” And I say, “My point exactly, let’s get on with it. I have one question. Am I going to have a Barbie butt?” He gets very quiet, doesn’t say a word, and finally says, “I don’t know what that is.” And I say, “no crack.”
He doesn’t say another word for the longest time, and his nurse is off to the side about to faint, trying to suppress her laughter. And finally, he takes the pencil out of his mouth and he says, very seriously, “I never knew that about Barbie.” I keep a very straight face and reply, “Yes, it’s her only flaw. And Ken, too. It’s a shame.”
Q: Oh my goodness, what a funny interaction!
A: At that point it had taken about three months to assemble the team and schedule the surgery, which was supposed to be in late September. The day before the surgery, I went in and waited and waited while the cancer surgeon was, I was finally told, interviewing new patients.
Finally he came in, and I mentioned the cortisone shot he said I could have for bronchitis I got after taking my flu shot. And he said adamantly that he never said it was okay to get that shot! His assistant popped in to show him on my chart that, yes, he did say the shot was fine. Then he told me he couldn’t operate because I had a cough. And finally he said, the surgery is not urgent, it can wait.
Q: How frustrating.
A: Yes, and then I asked him about my most recent PET scan. He suggested that I should have read the report on my internet portal. I explained that I was not in the habit of reading my own reports. He grudgingly agreed to take a look at it. It showed that there was a mass in a lymph node between my lungs! I needed to see the pulmonologist, a thoracic surgeon, and an oncologist, and my surgery could wait.
I turned to my friend who had come with me for the surgery and said, “I need a drink.” So we go join my husband for a cocktail and talk about what to do.
Q: What was your next move?
A: I saw the doctors I needed to see, and was told that the mass near my lungs was inoperable and cannot be treated with radiation. There was no chemo that seemed to be effective on anal cancer. They said, “we suggest you go live your life and enjoy it.” So I left, and was of course very dejected.
Strangely, my 53-year-old cousin in Florida had been diagnosed with anal cancer two years earlier. Strange because this cancer does not have a hereditary component. Her mother called me and told me about a doctor in Houston who was treating anal cancer patients with a new immunotherapy treatment.
At this point I wasn’t thinking of myself, just my cousin, because I figured my situation was hopeless. I went in to talk to the doctor about my cousin. But this darling young man, in his 40s, examined me and told me he could operate and perform a colostomy for me robotically. “You are as alive and healthy as anybody I’ve ever met,” he told me.
Q: Wow, that’s a change in plans!
A: Yes, the next month I had the colostomy, and two months later, I had another robotic surgery where they plucked out the mass near my lungs, and once again I showed no evidence of disease for about one year. Then, they found three tiny new growths in my lungs; I was seriously stage 4, and my doctors said they didn’t think they could do anything for me.
I was still looking at potential solutions, though, and at that point I had reached out to Cancer Commons. My new oncologist told me about a new clinical trial for CAR T-cell therapy, the HESTIA study. At the same time, Emma Shtivelman at Cancer Commons suggested to me that it could be my best option. Isn’t that amazing?
Q: That definitely sounds like a a good sign. What was your clinical trial experience like?
A: Two or three weeks after I found out about it, I was giving them my blood. In this treatment, they take immune T-cells from your blood and alter them so they will attack your cancer cells. My treatment started the day after I finished a show. After the CAR-T infusion, I also received infusions of an immunotherapy drug called nivolumab (Opdivo). I had four nivolumab infusions over the course of 8 weeks, and a PET scan after that showed that the treatment had reduced everything by 80 percent or more.
Then, we did another round, and this time it completely removed everything that was visible in the scans.
Q: That is wonderful news. How did you first hear about Cancer Commons?
A: I actually heard about it through a prayer warrior group. These are people that I write to who pray for me, and one of my dear friends in that group called me and told me that she’d heard from her cousin about this wonderful website called Cancer Commons, and she thought I should go on it and see what they could suggest.
Emma not only helped me when I first reached out, but she continues to catch up with me and keep up with me. I consider her my friend.
Q: What else would you like to share about your cancer experience?
A: Nivolumab has affected my thyroid, not drastically, but I am now on thyroid medication. And it’s made me gain about ten pounds, which I hate, but it’s better than having stage IV cancer!
Other than that, I don’t have anything very negative to say. I have continued to sing. I just finished a show doing Irving Berlin songs, and another doing Frank Lester pieces. Our family always travels together during the Christmas holidays, and hopefully this year will not be an exception.
Q: What advice would you give to other cancer patients?
A: The advice I have to give is that you do not take “no” for an answer. You keep advocating for yourself. You keep asking questions. You reach out and do as much research as you can. In my case, my daughter is my amazing researcher.
Most important is to believe you are going to be okay. Faith saves me. I really believe that having a positive attitude is vital to attacking cancer. I’m blessed with a firm belief in God and the hereafter. That keeps me hopeful.
My mother was a fantastic nurse who just loved medicine and brought it home with her every day. So I am not afraid to talk to doctors about medicine and stand my ground. I don’t think anybody should be afraid to say, “I need another doctor; this one and I cannot get along.”
Q: You’ve touched a bit on the support you’ve gotten from friends and family. Can you say a bit more about that?
A: I am extremely blessed to have a devoted husband who really is my best audience. He loves to see and hear me sing more than anything in the world. That’s how I got him to propose to me; I sang romantic songs directly to him in the middle of hundreds of people, over and over again, every night. Somebody turned to him one night and asked, “Doesn’t that embarrass you?” He said, “Not a bit.”
So we’ve spent 50 years together now. He’s at every performance of every single show I do. I usually find a way to dedicate one of my songs to him, and it still thrills him to death.
I am also blessed to have my daughter and my son-in-law. My son-in-law has become a son to me. We have become his parents, and there has never been anybody I can say loves me more than he does. My daughter is right along with him. So I’m just really, incredibly blessed. Not everybody has that support system. And best of all, they have blessed us with a beautiful baby granddaughter, Josephine, who truly is my mini-me. She lives for music.
In addition to that, I have a wealth of wonderful friends and supportive prayer warriors who keep up with me and pray for me all the time. And I am a soloist at my church, so there are 4,000 people there whom I don’t necessarily know myself, but they know me. When my name is called out in church to be prayed for because I’m ill, they really do.
Q: It sounds like music is something that’s pretty essential to your life.
A: Yes, I’ve been performing since I was a child. The other day, my friend gave me a shirt that says, “Be careful, I’m liable to burst into song at any moment!”