July 2010: Ruth Ann Stoner Nieves

Featuring and Written By:
Ruth Ann Stoner Nieves

(Daisy3 on Kidney Cancer Forum)

I was born and raised in California. I studied in Granada Spain for 1 year when I was 19, fell in love with a Spanish man, married and have resided in Spain permanently since 1976. I have 2 adult children who live near me, I’m 58 years old.

My cancer story started in late January, 2004, just before my 52nd birthday. I was feeling better than ever, had been on the Atkins diet for 7-8 months and shed some excess weight, was doing aerobics and swimming regularly, and my professional career (I teach American Literature at the University of Malaga in Spain) was at its height. I had defended my PhD dissertation in 2000, I had obtained a tenured position at the University in 2001, and had presented a paper at a literature conference in the States in which I had received great public praise by the most prestigious experts in the field. I felt on top of the world. I had made an appointment to get my body into better shape (nothing more than artichoke and heat and massages) with a clinic, where they asked for a blood and urine test. My urine came back with traces of blood. The doctor told me it could be nothing, but it could be something. Before I could get an appointment with my family doctor, I saw the blood in my urine with my own eyes. And within 24 hours I began having the most excruciating pain I’ve ever experienced, while passing bloody tissue in my urine. My husband drove me to ER, and they gave me a painkiller and ran some tests (blood and sonogram), and admitted me. The next morning the urologist, who would become “my” urologist, stopped by and said I had a little cyst on my kidney and it would need to be removed, in no rush, but the sooner the better. I was shocked as I was almost certain I had kidney stones. At any rate, it still sounded quite harmless, and the urologist scheduled surgery for a week later, and explained it would be by laparoscope, and nothing serious. I was in the hospital for 3 days under observation, and on the last day, the urologist’s partner came round and told me the truth: not a cyst, but a tumor, a malignant tumor, and they would be removing my entire kidney. I went into a state of, for lack of a better definition, I will call denial.

The next week (5th February) my right kidney was removed laparoscopically. The pathology: carcinoma of conventional renal cells, grade II, stage I pT2, 7 x 4.5 x 4.5 cm. I woke up from the surgery feeling fantastic on a Friday and on Monday I was released. I felt physically good, but I felt that it had all been too fast and I had not had a chance to even think about it, much less give my opinion or get a second opinion or see an oncologist. I felt my kidney had been removed without my permission. I was back at work while I still had stitches. I had a checkup scheduled for 3 mo., then 6 mo., then at one year intervals at which I was told they’d got it all, I was cured and best to forget about it and live life. After my 3 mo. checkup, out of my own curiosity, I went to see an oncologist and told him I was worried and still in a state of semi-shock and wanted a brain scan. He complied, told me I’d done the right thing, the scan was clean and that I should follow the instructions of the urologist. Not one single doctor had ever used the word “cancer” in my presence.

At this point I started thinking about a bucket list, coming to the realization that there was no guarantee that I would live to be ninety or more, like my healthy and robust parents. In May of that year I combined a trip to California to attend a literature conference in San Francisco with a visit to my parents and meeting up with my daughter who was teaching in Kentucky at the time. I felt great. When I got home I decided I wanted to go on the pilgrimage of the Camino de Santiago in the north of Spain, which is about 900 kms., over hill and dale, through villages and cities. I am not an outdoorsy person at all and certainly not a hiker, but I thought this was something I needed to do to get in touch with my innermost being and to find a spiritual answer to the meaning of life. So I started reading up, gathering gear and training, with a planned date for the next summer, of 2005.

When June of 2005 rolled around, I was scared, but I wanted to do it, so I negotiated with myself and decided to do the last third of the pilgrimage, from Astorga (León) to Santiago. I left for Astorga with my backpack on the 24th of June and arrived in Santiago with bleeding feet 18 days later. All in all, it was a fantastic experience.

My next bucket list event was to apply for a research grant to study at Harvard. I got the grant and flew to Boston in February of 2006. I was there for 6 months, living in the apartment reserved for the Irish poet Seamus Heaney, in Adams Hall. This was my first time in New England, my first snowy winter, and of course the first time in such a prestigious University. I had the time of my life, was able to travel around to the homes of American writers and attend fantastic lectures and cultural events. I also became the godmother of a Boston baby and was allowed to “nanny” to my heart’s content. (My bucket list contains having a grandchild, so my godson substituted!)

In the fall of 2006, back in Malaga, I started having “irritable bowels” and began seeing a digestive Dr. who sent me for stomach x-rays, an endoscope and a sonogram. The only visible anomaly was a hiatal hernia. But when the doctor put pressure on my right lower abdominal area, there was pain, and the Dr. told me I needed to get a CT scan as soon as possible. This coincided with my annual urology checkup, but when I contacted “my” urologist, I received the news that he was no longer working for my insurance company. I was shocked and hurt by this news, so I had to find a new urologist. In December I saw one, got the order for a scan, and when it came back, it showed a fairly large tumor (8 x 6 x 4 cm) in the area of the right iliac pit. It also showed a small nodule in the suprarenal region in the right pillar of the diaphragm, but this was totally ignored. I also had a PET which showed both tumors, but for whatever reason the suprarenal nodule was ignored. I was devastated by the news and began organizing my “life” for an imminent death. I immediately made an appointment with “my” oncologist, and he recommended a respected surgeon to me. When I saw this surgeon, he told me he would operate, but it wasn’t his specialty, and that it should be a urologist. However, he did order a biopsy to be done, and it came back rcc,, as expected.

I was in a real panic, not knowing who to approach to operate, but through my friendship with the radiologist (she’d been my English student), “my” original urologist was contacted and he offered to do the surgery, free of charge. I also saw a psychologist at the University where I work who simply advised me to get going on my bucket list. So at the end of January I had the tumor (described as localized) removed and then my oncologist recommended follow-up radiation therapy, even though he knew it would probably be to no avail, but “just in case”. As a consequence of this surgery the nerve endings on the surface of the top of my right thigh are permanently impaired. I was back at work 3 weeks after the surgery.

Before the radiation started in April, my husband and I fulfilled another bucket list event: a trip to Prague, Vienna and Budapest. The sights were fantastic, the weather perfect.

I had 17 sessions of radiation (up to 48 Gy) from April to May of 2007. We Went to a Rolling Stones concert in Almeria in June. When my next CT scan was due, in July, I was told that “my” oncologist was no longer working for my insurance company! Again, I felt so abandoned. A new youngish oncologist ordered the CT scan and it came back still mentioning the little suprarenal nodule, as well as a “spot” in my left lung. However, the oncologist said it was nothing, and to prove it, she would order a PET scan. I also told her I needed psychological help for cancer patients, and she told me I didn’t, because I didn’t have cancer.

I wanted to wait until August for the PET as I wanted to attend a close friend’s wedding in the north of Spain and my husband and I had decided to drive the Santiago pilgrimage backwards, from Burgos to France, about 600 kms. We had a great time on this road trip and at the wedding in Andorra. When we got home, I had the PET which confirmed the suprarenal tumor, now 3 cm., and soon had to hear the oncologist say, “Oops! I thought it was nothing, but it’s something.” She then told me she would put me on a brand new almost experimental drug, Sutent, as she thought the tumor was located in a place that could not be removed, and at any rate, it was obvious the disease was no longer localized, it was systemic, “it’s all over your body” (!!). She did say that I could “find” a surgeon and ask about the possibility of resection. I was totally panicked and had no idea what to do. I had read very little about the disease, only knowing that it responded to next to nothing.

I decided to go for a second opinion to one of the most prestigious university hospitals in Spain, The Clínica Universitaria de Navarra, in Pamplona. I also contacted the M.D. Anderson in Houston, but knew I could never afford it. We travelled to Pamplona with my scan, but with no formal medical history, as I was never given one. Almost immediately, the wonderful oncologist assigned to me, Dr. Gil Bazo, told me he thought the nodule could be removed. I had a lot of tests in 3 days, a CT scan, a bone scan, MRI (to make sure that some vertebral signs were not cancer) blood, and the urologist told me he could remove the nodule. I felt like I’d been reborn. I was also given an estimate of the cost, as this hospital was not included in my insurance. I got a loan from my bank to cover the cost and was operated on 31st August. Pathology: 3.5 cm, type II rcc. The oncologist recommended radiation therapy again and I decided to have it there in Pamplona, even though I would have to stay there alone. I rented a room for a month and a half from October to November and had 21 sessions (up to 45Gy).

Upon returning home I saw my oncologist and told her plainly that I was not satisfied with either her service or that of my insurance co. I wrote a formal complaint to the insurance co. complaining about all the changes of doctors and having to go private to get decent treatment, but the complaint was ignored. I decided that it would be better to drop the private insurance I had and get into the National Health System, because the private company did not “coordinate” in the case of a serious illness, whereas the national system would. This took place in January 2008. When I had my first oncology appointment, much to my surprise and dismay, I found myself face to face with the same oncologist! I saw her a second time and then I asked to be assigned to a different oncologist. I then started seeing Dr. Trigo, who has captured my faith, trust and admiration. At this time I also started seeing a psychologist specializing in cancer regularly through FMAEC, free of charge.

I was now having CT scans (with contrast) and blood work every 3 months. All good. In July and August of 2008, my husband and I decided to fulfill another bucket list item, a big one. We carried out a road trip from the West Coast to the East Coast of the U. S. and back again, lasting 50 days. We did a lot of fun things on this trip, such as seeing Stevie Wonder, white water rafting, many national parks, a historic railroad trip, Crazy Horse Memorial, Niagara Falls, driving all the way to Key West, Taos (and D. H. Lawrence’s house) and following bits of Route 66, among other things, I had dreamed of. When we returned we took our 2 children and their partners to a Madonna concert in Seville. In February of 2009 my husband and I had a week in Punta Cana in the Caribbean with 2 other couples. Later that year my husband and I went to Rome for a week at Easter then my daughter and I had a mother daughter mini-vacation and saw the Pretenders in Madrid. Then my husband and I visited Amsterdam for a week in October, and then back to Punta Cana in the Caribbean for Christmas.

Just before the Amsterdam trip, I had a CT scan that pointed out several “nodules” in my lungs that could be metastasis. My oncologist in Malaga, Dr. Trigo, said the spots had been there for a long time and had not grown and not to worry, and that my next scan would be in 6 months, instead of 3-4. We decided to go to Pamplona again for a 2nd opinion. “My” oncologist was unavailable, so another oncologist there reiterated exactly what Dr. Trigo had said.

My husband and I travelled to the States to visit with my parents and celebrate my mom’s 90th birthday in Feb. 2010. We took my parents on a trip to London Bridge, Sedona and Las Vegas and celebrated the birthday with family and friends. We also discussed the possibility of going back to California permanently, on retirement in a couple of years, to take care of my parents and be there to brighten their days. My husband and I were also attending ballroom dancing lessons and having a lot of fun with it.

I then had my CT scan in March. In between having the scan and the results, completely out of the blue, my husband packed up and left me. I simply could not believe it. He took sick leave for depression and just walked away. I was devastated. Then about 5 days later I got the results of my scan: those nodules in my lungs WERE growing! There were 3 in my left lung and 1 in my right lung. My lungs!! Dr. Trigo recommended going on Sutent. After a week-long pity party, I got on internet and started getting information and realizing for the first time that I, myself, would have to take control of my body, my cancer. At this time I visited a non-profit org near where I live, Cudeca, who were able to confirm that my oncologist in Malaga was excellent. Dr. Trigo ordered a PET scan and I asked for a brain scan, which he agreed to. I went over all the information with Dr. Trigo that I had gathered from internet and especially from the Kidney Cancer Association and all of the wonderful friends I had started to make through Facebook, such as Bill Bro, Lynnette Boundy, Katherine Phillion, and the Kidney Cancer Konnection chatrooom, they all gave me so much hope and support. I discussed surgery, alternative therapies, prayer, etc., but Dr. Trigo remained firm about Sutent.

I also had an appointment with an oncologist in the M.D. Anderson in Madrid for a second opinion. She coincided with Dr. Trigo about going on Sutent and tried to get me into a clinical trial of Sutent v. Votrient, but I realized I could not afford the travel and tests involved.

I travelled to Pamplona around the 20th April for another 2nd opinion and my oncologist, Dr. Gil, for the second time, had another game plan. He also was running the same clinical trial as M.D. Anderson, but he thought surgery was a much better option. He wanted to put my account at zero, explaining that there would always be time in the future to start drug therapy if the cancer reappeared. He did another scan and I spoke with the thoracic surgeon, Dr. García Franco. Dr. G. Franco explained that he had trained in the Mayo Clinic in Minn and that he had very successfully done this type of surgery many times. He explained that he would operate on the left lung first, the “worst” lung, and then within a week to 2 weeks would operate on my right lung, probably by VATS. He also explained that he would go in and palpate the left lung in search of any nodules too small to be captured in the scan. He told me that each operation would require 5-7 days in the hospital. I said I wanted to stay in the hospital between surgeries, but that was vetoed because of the risk of infection, and I was told to rent an apartment or stay in a hotel near the hospital for the space in between. I also asked if I could have the surgeries at the same time, to which the surgeon said I could, but he did not recommend it: if the lungs were to collapse. . . . My 2 children, who were now by my side at all times, were convinced surgery was best. I had already reconciled to going on Sutent and found it hard to imagine going through 2 surgeries. I would also have to pay (getting a bank loan ) for the surgeries and care in this private hospital, plus travel expenses for me and my children and the inconvenience that Pamplona is a 12 hour drive from Malaga, and the connections by air and train (very expensive) leave a lot to be desired.

I had promised Dr. Trigo to return with my 2nd opinions so that he could assess them with me. Dr. Trigo felt that surgery was too invasive and maintained his desire to start me on Sutent. But when I asked him the question: “What would YOU do if you were me?” he said he honestly could not answer, he didn’t know, and that is the moment I knew I had to choose surgery. Dr. Trigo also told me I could get another opinion from his mentor, Dr. Bellmunt, in Barcelona, who is supposedly the maximum expert on Kidney Cancer in Spain, but I felt too exhausted. I wanted to make a decision I trusted and stick with it. I also asked Dr. Trigo about having the surgery in Malaga through the National Health System, and he immediately vetoed that, saying that if the surgeon in Pamplona trained in the Mayo, he could be trusted. I still found it hard to imagine going in voluntarily for 2 surgeries, as I felt so wonderful. . . .but I was also beginning to feel the same dread of going on a drug with side effects.

Around the 5th of May I was fortunate enough to be able to travel to London to attend the 1st Seminar for Kidney Cancer Patients and Caregivers, held by the Kidney Cancer Association. This was a fantastic opportunity to get first hand information about treatment options and to mix with other patients and hear their stories. So I had the opportunity to ask the surgeon, Dr. Aitchison, and an oncologist, Dr. Pickering, about my personal options and they both concurred with my choice for surgery. This got my confidence back! (I also met up with a friend and went to see the Thriller musical, I love Michael Jackson). My daughter gave me a book to read: Surviving Cancer, by Margie Levine. It is excellent and just what I needed. I then ordered some more books, but the best by far for me were: Remarkable Recovery, by Caryle Hirshberg and Marc Barasch and Anatomy of an Illness, by Norman Cousins. These books gave me hope and inspiration for concentrating on curing my illness and staying positive.

I also had the added complication of whether or not to tell my aging parents, so far away from me (my younger sister passed away with complications from multiple sclerosis in 2001, aged 46). I finally decided that if I were them, I would want to know, so I told them in as positive a way as I could.

So I had my first surgery scheduled for 13th May. I drove to Pamplona with my son, and then my daughter arrived on the day. I checked in on the 11th to spend that evening and the next day on preop tests: blood, heart, lung power, chest x-rays, etc. The worst test I had was drawing blood from an artery on my wrist. It took 3 different attempts, was very painful, and I got faint the first try. I asked the surgeon if that test could be omitted from the 2nd surgery and he agreed. I was given an anti-bacterial ointment to put in my nose and was put on aerosol throughout the day. The anesthetist came round and explained I would have an epidural, and the surgeon explained I would be in ICU for 1-2 days. He also said they’d found I had a “leaky valve” in my heart but that it was very minor and would not make a difference in the surgery. I had my betadine shower that night and was taken to OR around 10 the next morning.

I awoke from the surgery feeling fantastic, I think it was around 4:30 p.m. Wide awake and feeling happy. Dr. G. Franco came in and I told him I loved him! Then I saw my children. At some point, before I wanted to, they got me up & sitting in a chair. I was also visited by a physical therapist who went through breathing exercises with me and made me cough. She said I was doing excellently. After 24 hours the Dr. said I could leave ICU for a regular room and diet. I got excellent nursing care, excellent food, and the surgeon visited twice a day to tell me I was doing much better than any other patient he’d ever had! I was told that the 3 small tumors had been removed, as well as 3 others invisible to the scan, and that he was pretty sure that 2 of these 3 were malignant, but one was not. Nevertheless the pathology report would take at least a week. And if the 3 happened to be benign, then he would perform the right lung operation by VATS. By the 3rd day the drain was removed and I got up and got dressed and went for a walk outside the hospital. On the 4th day the Dr. told me I could leave the hospital, but I said I wasn’t ready, he understood, but said I would spend the next 24 hours as if I were home (dressed and walking around). My son and I made arrangements to spend the time between operations (the 2nd one was now scheduled for the 24th May) in Roncesvalles, about an hour north of Pamplona at the foot of the Pyrenees. However, when we left the hospital on that Tues. morning, I said, “Let’s go HOME!” So we made the almost 12 hour drive, and in fact I drove for about 3 hours.

Coming home was good and not so good. I was happy to be home, and happy for my son who had been with me the entire time, away from his wife and job. But not finding my husband in the house was too much, it made me sad beyond imagination.

But I thrived and got stronger and happier each day. I took no medications at all. And soon I was packing my bag again for the trip back to Pamplona. This time I drove up with my 2 children and I did not have to spend an extra day in the hospital, nor have so many tests: chest x-rays and blood (not artery!). I checked in the evening before, saw my lovely surgeon who told me that the pathology report had confirmed his suspicion about the tumors: 5 were malignant, 1 was benign and because of that he felt that he would have to go into the right lung conventionally and palpate it also. I felt relieved by this news although I also was hopeful that a keyhole type surgery could have been done.

I did the betadine shower and was taken to surgery at about 8 a.m. When I woke up in ICU, I think around 1 p.m., I did not feel great the way I had before. I was drowsy and uncomfortable and spent the day mostly sleeping and complaining. I got great care and the next morning they got me out of bed and sitting for breakfast. A couple of hours later I was taken to a regular room, but this time it was a kind of suite with a huge ante room for my son. I joked that before the 1st operation I’d said I wanted to be like the King. The King of Spain, Juan Carlos, had had a nodule removed from his lung just 3 days or so before my surgery and he walked out of the hospital after 3 days looking fantastic. So I figured the suite was because I kept saying I wanted to be treated like the King!

I had excellent care again and was really getting to know the nursing staff. On the 3rd day, Dr. G. Franco told me he thought I was well enough to leave the hospital, but did not want to pressure me. On the 4th day he again said I could leave when I felt like it, but I said I was not ready. I was much more “uncomfortable” than in the 1st surgery and much more reluctant to get dressed and walk around. However, on the afternoon of the 4th day, my son and I decided it was time to leave the hospital, and we would drive part of the way home and divide, in this way, the long trip back. We left the hospital at nearly 7 p.m., drove until about 11:30 p.m. where we stopped at a hotel in Guadalajara. I was scared and in pain and decided I was tired of being a hero and model patient, and that if the Dr. had prescribed medication for pain, I was going to take it! So the drive home the next day was more comfortable, but still hard: I think the fear factor was high.

We arrived home on Friday, 28th May, about 5 p.m. and I immediately went into a depressive state. I was taking the pain medication as prescribed, but was crying and feeling sorry for myself, feeling my body was no longer whole and in deep despair about my future, the loss of my husband. This state lasted for about 4-5 days and I could not see that my soreness and pain was improving. So I tried to get in control and told myself that unless I improved my state of mind, my body would not improve. I slowly started to feel better, both physically and mentally and began wanting to be a part of the world again. I got the staples out of the drain incision and that made me feel free and independent. I am still sore and uncomfortable at times, but am up and doing laundry, light housework and cooking and going for a daily walk. And best of all. . . .I am NED!

Ruth Ann Stoner Nieves
Spain




Ruth is no longer with us.  She won her battle against kidney cancer and will live on in the hearts of those who knew her and loved her.