kidney cancer WARRIORS: December 2010: Jill Monahan

Featuring and Written By:
Jill Monahan

With my sweet husband Jim, who is my rock

November 2009

In the late summer of 2004, I was a month from my 40th birthday, newly pregnant for the second time, and looking forward to a sibling for my then toddler daughter. On a Sunday morning, I woke early feeling sick-ish. I decided to take a shower, and while in the shower, started to feel violently ill. Pain was coming from deep in my left side, and I thought I was bleeding from my pregnancy (in retrospect it was blood in the urine.) I thought I might be experiencing a tubal pregnancy so my husband Jim took me to the ER. They performed an ultrasound and said that the baby was not in a fallopian tube, but rather in the uterus and was fine. My pain had subsided during my hours of waiting in the ER, and the doctor thought I might have a UTI so I was prescribed antibiotics and sent home. That week I was very ill with what was probably some kind of virus, and continued to see blood. At the end of that week, I saw my gynecologist for a regularly scheduled early exam and learned that I had miscarried. She felt that the virus and the miscarriage weren’t related, and told us we could start trying to conceive again soon. Over the next several months, I had periodic blood in my urine and experienced back pain. Several times I went through the process of going to the lab to give a urine sample, being diagnosed with ‘probably a UTI’ and given antibiotics.

In early 2005, I was again newly pregnant, and the pregnancy was confirmed to be a healthy one. At about 8wks, I woke in the night in horrible pain; my urine had a lot of blood in it. I knew it couldn’t be a tubal pregnancy, so figured it might be a kidney stone. So off we went to the ER again, arriving at 3:30am. The attending physician in the ER was initially very grouchy; apparently we were interrupting his sleep. However, when Jim held up my urine sample, which looked like a cup of fruit juice, he quickly changed his tune. An ultrasound was performed and I was told that I had a large cyst in my kidney. They couldn’t perform a CT scan because of my pregnancy. The urologist who was assigned to me ordered a MRI to be performed as an outpatient. The MRI folks, however, turned me away at the appointment because I was still in my first trimester. I rescheduled the test for the beginning of my second trimester, six weeks later.When I arrived at the imaging center, the MRI tech again refused to scan me because of my pregnancy. He had me talk on the phone with a radiologist at the hospital affiliated with the imaging center; she asked me to come to the hospital so that she could perform an ultrasound. She was very kind, and very thorough; she spent a long time with the ultrasound and brought in another radiologist to consult. In the end they decided to do a brief MRI. When I came out of the test room, the radiologist told me there was a mass in my kidney. Mass? I asked? You mean as opposed to a cyst? Yes, she said, and I could see the sadness and caring in her face. I was stunned; did not know what to think.

My urologist recommended that I go to Cleveland Clinic (where I also happen to be employed) to see someone more specialized about the mass. I made an appointment with one of the urologists, and mentioned to a friend/co-worker that I was seeing this particular urologist in a couple of weeks. My friend works directly with the physicians, so I wanted her opinion about this physician. She didn’t know him well, but she thought I should be seeing someone else… namely Dr. Andrew Novick, who was at the time, the chairman of the urology institute at the Clinic. (Dr. Novick has since passed away, a victim of cancer himself.) She called his secretary and arranged for me to be seen by him. When I met with him, he told me that due to my pregnancy, he wanted to biopsy the kidney. After that “fun” experience, the results were “inconclusive”, which in his experience meant “malignant”. He and my obstetrician (I had been referred to a high-risk OB at this point) agreed that the kidney had to come out. So, Dr. Novick sent me across the Clinic campus to meet one of his surgeons, Dr. Kaouk.

Dr. Kaouk is a soft-spoken yet very confident surgeon. He explained that he would try to do the procedure laprascopically, and we could see that he had all confidence in the procedure going well. He was, however, very concerned about my growing fetus, especially since I was his first pregnant surgery candidate. He spent a long time looking at his surgery schedule to figure out how quickly he could get me in to surgery; at this point I was about 16 weeks along and he didn’t want me to grow too much bigger before he operated. So, the surgery was set for the following week… only 5 days away! My head swam with all the things I needed to do before going out on medical leave, but the short window gave me less time to fret and worry.

The surgery went very well, though I awoke in terrible pain thinking "hey, isn’t laprascopy supposed to hurt less? While in post op. I was visited by OB folks who came in to do an ultrasound. I slept through that, only waking a bit when they finished and said “your baby is fine, Mrs. Monahan”. On our way home from the hospital two days later, I felt the baby move for the first time, which to me was a sign that everything would be all right.

The tumor in the kidney was about 11.5cm. It was a grade 4 tumor, clear cell RCC, but all margins were found to be clear. I rested and recovered from the surgery, and the rest of my pregnancy was very uneventful, until October 6, 2005, when my new daughter was born. Life was good for our family.

Scans six months later were clear, and I returned for more scans a year after the nephrectomy. Those scans were not so clear. A nodule in my lung was seen, and a lymph node in my abdomen had grown. I was immediately referred to an oncologist, Brian Rini, who saw me the next day. He felt that the lymph node was enlarged as a result of my surgery but wanted to biopsy my lung. After that even MORE “fun” biopsy, I waited for results, and was told that it was not malignant. I had frequent scans over the next year, and in the summer of 2007 the lung nodule had disappeared altogether. I started feeling more confident that I was in fact still cancer-free.

That confidence was shattered in July 2008 when the abdominal lymph node grew again. Back to surgery I went to have the node removed. The pathology report noted that the node was in fact renal cell carcinoma, news that shattered me. I hoped and prayed that removing the lesion would take care of my cancer for good, but my very next CT in November showed that a mass was growing in my left side, under my ribs. It was decided that the position of the lesion was not conducive to using cryoablation, so I saw another surgeon who removed it in February 2009. It was again RCC, and while I was not happy, I was not as shocked and crushed as I was the first time. I ended up with my incision opening, and got to experience the joy of daily wound packing, then saw a wound care specialist when the wound wouldn’t close completely.

Happily, my April 2009 scans were clear. But the cancer struck again. In July 2009 several lesions were seen in my liver and a mass had appeared on my right ovary. Now we were into seriously scary territory. Dr. Rini felt strongly that the ovarian mass was not RCC, and hoped that the liver lesions were hemangiomas, so he sent me for MRI testing. Upon reviewing the films, it was decided that the liver lesions were likely RCC. Dr. Rini consulted with my gynecologist and it was decided to NOT biopsy the ovarian mass, but to start systemic treatment and re-assess… if both areas responded to treatment, then they would know the ovarian mass was RCC. Dr. Rini talked with me about a couple of options he was recommending for systemic treatment. I, however, had learned a lot about HDIL-2, thanks mostly to the folks on the Kidney-Onc list on ACOR. When I suggested it to Dr. Rini, he was supportive of my pursuing it. He recommended I consult with Dr. Olencki at OSU Medical Center in Columbus, Ohio, or with Dr. McDermott at BIDMC in Boston. Jim and I discussed the options at length and decided that Columbus would be the best choice for our family; one of the many wonderful people I met on Kidney-Onc encouraged me to stay “local” as well. The program is well-established at OSU and I figured that since the medicine is the same, it could work there as easily as in Boston.

We met with Dr. Olencki in late August 2009 and he agreed that I was a good candidate. The next couple of weeks were a flurry of tests and consults to make sure I was healthy enough for IL-2 – I spent a lot of time on the road between Cleveland and Columbus. I started IL-2 on September 10, 2009 and made it though 7 doses before giving up mentally and physically. We had decided that Jim would stay home with the girls while I was in the hospital, and that decision turned out to be less than optimal for all of us. While feeling very ill, I also really felt the alone-ness of being by myself at the hospital, despite daily visits from two of my best friends from childhood, along with some family that came down from Cleveland. The girls had a very hard time with Mommy being away; my younger daughter acted out by cutting her and her sister’s hair, as well as decorating our stairway with a permanent black marker. My husband felt strongly that he should accompany me for the second week of that first round, and while I didn’t want to disrupt everyone’s lives more than necessary, I really was glad that he was coming with me. Our girls stayed with Jim’s parents, where they were pleasantly distracted and did well.

My second week of that first round of IL-2 turned out to be the scariest. My blood pressure tanked and so I was not allowed to sit up, much less get out of bed. The whole experience was very hazy to me; I lost complete track of time. Later I learned I’d been given Ativan, which did its job in making me not remember my misery. At some point I was almost taken to the ICU but my blood pressure rallied in time. I “celebrated” my 45th birthday that week, though it passed by mostly unnoticed.

Upon my return home, I noticed that I wasn’t bouncing back as well as I did the first week. At first I assumed this was because of the cumulative effect of the IL-2, but as time went on, I felt increasingly jumpy and noticed my resting pulse was very high. I had little appetite but was losing weight at a far too rapid rate even so… in 2 ½ weeks I lost 27lb. I had thyroid tests done and it turned out that I was in a hyperthyroid state. From a cancer fighting perspective, thyroid changes are good news, but I felt completely lousy. I had an appointment coming up with an endocrinologist but one afternoon I looked and felt so bad that Jim called a nurse advice line. Upon recording my symptoms, the nurse directed me to go the ER, so I did… where I had a perfectly miserable experience, only finally getting some sort of treatment (beta blocker) after 6 hours or so. The beta blocker brought down my pulse so I was discharged with a prescription, which made me feel so much better within a couple of days. The endocrinologist reassured me that I was likely experiencing thyroiditis, though she did send me for a nuclear scan. My thyroid stabilized and I felt much better, returning to work a few weeks later.

I returned to Columbus for scans in mid-November. Dr. Olencki called me with results; stability of all mets, or as I told people, “nothing new, and nothing grew”. So that meant two more weeks of IL-2, starting just after Thanksgiving and ending a week before Christmas. I got 9 doses of IL-2 the first week and 6 doses the second. By Christmas I was toast. Luckily, Jim and I had done our shopping early and on-line so we just had to wrap gifts. My lasting gift from the IL-2 was joint pain, which was excruciating when I was discharged and took weeks to resolve. I gained a new admiration for people with arthritis from that experience.

I returned to work the second week of January, which in retrospect was too soon, despite the fact that I work at a computer all day, but I coped. It took a while to get my energy back; I couldn’t do many stairs and any long-ish walk (like grocery shopping) was exhausting. My memory was horrible as well; I frequently had trouble finding the right words or remembering small things like where my car was parked. Over time, these effects went away and I now have a great energy level and better memory – I am going to blame middle age for my lapses now.

I had scans in early February, and learned that everything remained stable. This was good news but because there was no measurable shrinkage, they did not feel it was in my best interest to continue IL-2. I had mixed emotions about that because, while I dreaded going back for more of the evil stuff, going back would mean we could see it working. Dr. Rini here in Cleveland told me that since there was nothing new to treat, we’d go 3 months and scan again.

After my scans at the end of May, Dr. Rini had good news and bad news for me. The liver mets were the same or maybe a bit smaller than they’d been last summer. That was great news; the IL-2 was perhaps still working its magic. My ovarian mass, however, grew. Dr. Rini consulted with my gynecologist, who consulted with a gyn-oncologist. He scheduled me for surgery to remove the mass, along with the right ovary. He also planned to remove a mass near the left ovary and one in the middle of my pelvis. I had that surgery in August, and awoke to learn that both ovaries had been removed; however, the pelvic mass was on the colon and so the surgeon didn’t want to remove it and have to turn my robotic procedure into an open one. He felt that what he removed was RCC and the pathology proved him correct. So, I went through menopause in 3 hours.

Once I recovered from the surgery, I started on Sutent, on the standard 50mg and 4/2 week schedule. Scans in November showed shrinkage of all mets and even the disappearance of two of them. My side effects have been annoying but tolerable, so I will continue on Sutent as long as it continues to work.

All through this journey numerous people have complimented me on my positive attitude and ability to roll with whatever has come my way. I’ve been told that my attitude is why I’ve done so well. I sort of agree with that, but truly, I feel like I have to be positive. I can’t just lay down and wait to die, especially when I have a very good chance of, at the very least, holding this disease at bay so that I can live my life. In addition, my daughters are now 8 and 5 years old. It’s not fair to them to have to live through this experience; I get truly angry at the thought of dying before they are grown. I fight for myself so that I can share their lives with them, and so my husband doesn’t have to raise them alone. Those girls are my inspiration; I looked at pictures of their sweet faces to get me through IL-2, and they will continue to inspire me to survive whatever comes my way.