Today I had CT scans with and without contrast. Met with Dr. B who had good news and bad news.
The bad news is that the tumor grew.
The good news is that it was a normal growth for two years since the last CT kidney scan. Dr. B now says it is expected to grow 2 to 3 mm a year. The details of the exact difference in size were not in yet from the radiologist report. It will be coming soon.
Dr. B is still not recommending surgery because the tumor is considered small. It has a 1% chance of spreading. Due to the location of the tumor, surgery would mean loss of kidney, not partial loss. If I lose a kidney, my heart has 50% chance of being deleteriously affected.
The result was disappointing. It indicates that all that I am doing is not working as well as I had hoped. Back to the reinventing a new plan of action. First, I am going to do something fun.
After two years of living with cancer, and overcoming the physical challenge of losing weight and the emotional challenge of overcoming fears, I set a destination celebration that would test me to the core. What I chose was akin to aiming for the distant stars.
With my daughter Ilona, I planned an 18-day independent trip to Italy’s hill towns. For a long time I have wanted to go, and I figured I wasn’t getting any younger. It was a test of strength to stand up to the cancer and to defy life-long lung damage.
From a trip to Italy seven years ago, I knew what I was in for. Among a few Italian cities we visited, the so-called “hill” town of Siena was one. More accurately, it was a mountain town.
You may wonder: Why walk when you can drive? The only cars and motor cycles allowed are ones belonging to the towns folk. And yes, the police know immediately if you are a local or not. They will find you and ticket you, even if you are from a different country. As a non-local, you can drive to the town. Then, you have to park at the foot of the hill and walk up, and up, and up. In Siena it felt like my lungs would explode, even while I was moving at a sloth’s pace.
Knowing what I was up against, I trained on a treadmill from January to May 2012. No stranger to the treadmill, I’ve been walking on it for years at the lowest level. Due to the pre-condition of serious COPD, that is all I thought I could, or should, do.
Twenty years ago, I told my pulmonary nurse that I planned to expand my lungs through vigorous walking and exercising. Kindly and gently, she told me that my lungs “do not do the whole alphabet.” “Your lungs,” she told me, “only go from A to B. You cannot expand your lungs.”
In spite of the advice, I continued to climb steps, walk fast and lift weights. Regularly, I go to a gym. So when I knew I was facing and embracing almost vertical hills, I set goals to see if I could go beyond my most recent best efforts. Each day I pushed myself for a few minutes more on the next highest level on the treadmill. By the time the month of May came, I had moved as far as the treadmill goes. Besides walking a few minutes a day at level ten, I did not go lower than level eight. It was very strenuous for me. Still, I was not sure it was enough.
Level ten on the treadmill was nothing compared to the hills I climbed. They were equally as vertical as Siena. Fortunately, Cordova, Orvieto, and Perugia have escalators to get into the towns. Once inside, only your legs will get you up the steep streets within the town.
As a result of my work, I made it up ALL the slopes in the hill towns of Tuscany and Umbria. It was slow and steady. Usually, Ilona insisted on going slow with her mother, the turtle. Once, I sent her ahead so she would possibly see the Rocca Maggiore Castle before it closed. It was situated at the highest hilltop in the precipitous town of Assisi. Eventually, I got there, though it was already closed for both of us.
Assisi has buses. Yet, those buses only go so far. There still remain at least half the hilly streets where buses do not go.
Ilona and I walked up the arduous streets and alleys of Volterra, San Gimignano, Cortona, Orvieto, Perugia, Spello, Spoleto and Assisi. And, we spent a day in each of two easier walking cities of Milan and Bologna. When we enjoyed two days near Rome, one at Hadrian’s Villa and another at Villa D’Este, both had innumerable steps. Yet these two days seemed less strenuous compared to the hill towns.
Travel is invigorating. We experienced sights we cannot see anywhere else, foods we cannot eat anywhere else, and met people we cannot meet at home.
While I ingested lots of pasta, gelato, and wine, I did not gain a pound. All that walking and climbing paid off. Yes, I went off my sugar free diet for cancer, but it was only 18 days.
Besides the ancient towns, the medieval buildings, the art museums, and the sensational scenery, we loved the people we met in Italy. On every trip, we meet people from all over the world. With our limited knowledge of Italian words, we connected briefly with some who speak no English. The language of love really is universal.
Some memories include Ilona and I surviving a level 6 earthquake and two aftershocks that happened at 4 AM on May 20. We were in a modern hotel that withstood the quake. Most homes and hotels evacuated people immediately. some people died. Two weeks later on May 29, a second earthquake occurred in that same area. At the time, we were safely in Assisi, about 120 miles away. Sadly, the epicenter was turned to rubble. Thousand year-old homes, museums, and churches were destroyed entirely.
Other memories include facing the fact that we did not like the hotel in Assisi as much as we expected. So we arranged to go back to Orvieto, where we were the happiest. It was there that we excitedly and cheerfully talked politics with like-minded couples from four different states all at once.
We enjoyed the many kindnesses of B&B owner in Orvieto. On returning, we were treated like royalty. When we left, the owner and his staff lined up to hug us and wish us farewell.
Another experience was staying up to wee hours drinking wine and limoncello with an English speaking couple from Belgium. For several nights, we had animated discussions on their culture and ours. Now we have a standing invitation to visit them. They are invited to visit us. Meanwhile, we stay in touch by email. Cheers to them, and to all the delightful people we met.
It required patience and perseverance to prepare mentally and physically for that journey. It was a personal triumph for me to overcome every challenge and to scale those hilly mountains.
Metabolic physician, Dr. P, believes in giving supplements long before and long after any surgery, if surgery is needed. An obstetrics surgeon who ordinarily believes in removing a tumor, Dr. P said she trusted my instincts and respected my desires. Saying that I had the right personality and drive for this holistic approach, Dr.P heartily agreed to support me in making my body inhospitable to cancer.
In case cancer would spread, Dr. P did not want to rely solely on supplements for too many months without a CT scan. She suggested that it’s likely the tumor already has been there for years. That reinforced my conjecture that there needs to be fewer worries about urgency and more focus on saving my kidney. If it’s been going on for a while and it is still small, then it may not tend to grow quickly, I reasoned.
After Dr. P read my answers to a 22-page questionnaire, she thought the plan I devised was very good. Already I have been taking two supplements that she would have recommended for me if I had not been taking them already, the fermented wheat germ that blocks glucose from cells, and an immune booster. She approved of the wheat grass and tumeric.
Still, Dr. P recommended five additional supplements. One for oxygenating my lungs, one for estrogen metabolism, another is an enzyme that lowers inflammation, one is an homeopathic liquid for lung improvement, and another is a buffered vitamin C powder to lower inflammation. They all have multiple benefits for me and all create the hostile environment for cancer cells.
Spending over an hour with me, Dr. P tested my metabolism with a device before she drew up a plan that included five additional supplements plus the two key ones I was taking. Also, she gave me her e-address and several phone numbers to reach her if I needed anything. Every person I met at the office was exceptionally warm, upbeat and caring to me and to each other. They genuinely liked working there. It was a very unusual experience. I was given an individualized care manual to follow. It included a reading list, nutrition information with charts, phone numbers and email addresses for everyone in the office, etc.
Impressed with Dr. P, my husband Ed became a believer in this plan of action. With her many years of experience with cancer patients, Dr. P’s expertise helped Ed overcome his fears about my alternative plan. Now he thinks I made the wisest choice.
Ed reminded me that I have a lot to do in following this healing path with eating a severe diet, learning new food choices, taking the multitude of supplements, etc. I said it beats losing a kidney and experiencing many weeks and months of painful recovery from surgery.
Meanwhile, many changes were occurring within me. Since this was the tenth week of dealing with cancer, I had already lost ten pounds. Knowing I needed to enjoy everyday, many friends gave me wonderfully creative and healing gifts. And to remind myself of wellness, I kept in my office a mylar balloon that said “PARTY.”
Also, I continued my spiritual practices. One of them was, and is, to have fun, being aware of the enjoyment in each moment. Another practice is to rejoice in my generous and loving friends everyday.
After reading a lot of information on the internet and searching through book stores, I added another supplement, one that stimulates the immune system. Meanwhile, I continued avoiding any food with added sugar, including even most well respected cereals. Steel cut oats was my main breakfast and only the fruit I added changed daily. Knowing that fruit had fructose, I did not think it would be a problem. Being such a healthy food, fruit was a staple of my diet.
One day in June, I called into the company making the fermented wheat germ product, the receptionist handed me over to a product expert named David. Mine was a simple question about the timing of ingesting the product suggested on the box. An easy conversationalist, David answered my question and talked about aspects of cancer. I shared that I was taking two supplements along with wheatgrass, several herbal supplements including four tumeric tablets equaling 2,000 mg. and a sugar free, alcohol free diet. David said: “Bump up the tumeric to 4,000 mg. daily.”
Unsure if I was doing enough, I confessed I had no medical guidance on my do-it-myself journey. Asking my location, David recommended Dr P at the La Valle Institute where three doctors practice. Thanking him, I immediately googled Dr P. Since she is listed as a gynecologist, I was skeptical, and called anyway. I left a message saying that I had cancer and I would take any doctor that was available.
The office manager, Mary, called back from her home at my dinner time and apologized for being too busy to call sooner. She had taken my name home with her and was calling from her kitchen. Assuring me that it was Dr. P that I should see, I made an appointment.
Asking me how I found the institute, I told her about the friendly man associated with two of the supplements I take. Mary said, “Oh yes, David. He’s the owner of that supplement company. Dr. P likes those products you are taking.”
On July 28, I showed up at Dr. P’s office. The first thing she asked me was what I had for breakfast. Proudly I answered: “Steel cut oats, milk and banana. Her response came swift and emphatic: “No grain, no dairy, and no fruit. Only organic meat and vegetables.”
Later, Dr. P amended the fruit rule saying that if I had any fruit, I had to eat three times as many vegetables with it.” Oh, mixing it with vegetables would kill my love of fruit. My sweet tooth was already reeling from the no-sugar rule I imposed on myself. Now having to limit fruit was a shock.
After testing my metabolism with Electro Dermal Screening, Dr. P declared I was doing quite well. The doctor and I both agreed that if the cancer grows, I’d go for surgery while continuing the supplements. Dr. P assured me it is safe to get another CT scan in four months to check the status. If the tumor stays the same or gets smaller, I’ll just keep taking supplements.
Dr. K requested an office appointment five days after the procedure to determine the type of kidney cancer. I knew he wanted to schedule surgery.
The day arrived. June 29 was a sunny morning. Ed drove while I prayed that I had the strength to face the day’s challenges. In a few hours, I would conduct my first interview for my new Blog Talk Radio Program. Unsure of the technology, I was insecure about whether I would ever be prepared enough to interview a psychologist in a venue that could be heard around the world.
Definitely, that was not what I was most concerned about. One anxiety centered around overcoming kidney cancer. The most immediate apprehension focused on how difficult this meeting would be. I let the summer sun warm me. On the short drive, I imagined that the sun was pouring power into the cells of my body.
Once at the office, Ed and I were escorted to the office with the doctor’s big desk, not the usual utilitarian, soulless, cramped space. Dr. K came in after awhile and took his place behind the desk, facing us.
Getting right to it, Dr. K informed me he had already scheduled surgery for me. In three weeks was the date. Explaining all the aspects of surgery, he said he would have to go in by hand the old fashioned way due to the tricky location of the tumor.
Quickly I reminded him of the risks of such a long surgery since I have serious complications with my lungs. Dr. K thought it was no big deal since I needed this surgery to live. I asserted that whenever I had surgery I wanted my pulmonologist to be consulted. Neither agreeing or disagreeing, Dr. K was convinced I needed surgery no matter the extenuating circumstances.
“There’s a good chance I can save some of the kidney, and just cut out the cancer,” he cheerfully stated. “Yes, and it’s not likely,” I guessed aloud, disputing his claim. “Well, there’s a slight chance,” Dr. K countered. That was more what I thought. From the beginning, I knew I could not count on rescuing any of that kidney. Now the truth was out: just a slight chance, not a good chance. I was even more convinced of the risks.
Yes, I know I have another kidney. There’s a reason we are supposed to have two. I wanted them both intact if I could manage that.
I was aware of the risks of not having surgery. Cancer could spread and I’d be in much worse difficulty. As a calculated risk, I hoped it was worth it. It appeared to be all or nothing, and I was willing to go for it.
I told Dr. K and my shocked husband that I wanted to try some things for the next three to four months before I would consider surgery. My strong feeling was that I had time. The tumor was found by accident. I had no symptoms. It was only an inch in size.
“Size doesn’t matter” the doctor insisted, “a small tumor can spread as fast as a large one.” Though it had been five days since Dr. K performed the procedure, he said that my cancer may have spread already in those few days.
The biggest reason I wanted time was that I wanted to continue taking a supplement of fermented wheat germ. It takes at least three months to see any results. I did not share what I was thinking.
Reading my mind, Dr. K emphatically asserted that “no diet, no supplement, and no prayers are going to save you.” He made it clear that surgery was the only route and I could do it now and stay safe, or do it later when it spread. Urgency was of the utmost importance.
Ed was torn. I could see it on his face. He had said earlier that he believed I should have the surgery.
“I will get another CT scan in three or four months and then decide based on results,” I stated. Taking advantage of the doctor’s shock, I stood up and said: “Thank you. I’ll be in touch if I decide to have surgery.” We shook hands and parted without any bad feelings. Dr. K was gracious, suggesting I could get a second opinion if I had doubts.
Very relieved the exchange did not get ugly, I walked out to the hallway knowing I had no intention of having surgery before I gave my best to another way. While I had a plan in mind, I did not know if the one supplement and the no-sugar diet was enough to sidestep the spread of cancer in a few months.
And what would stop cancer altogether? While having no clue, I was committed to searching for something. I did not know what or how.
As with any relationship, this one continues to evolve. Surprises occur, some I like and some I don’t. Cancer doesn’t care about my opinion. It just is. Or is it? One thing I know for sure: I’m in this to learn. This crash course in life has provided enormous opportunities to widen my scope.
No advanced doctorate degree could be more intense. My cancer education has been on a physical, mental, emotional, and spiritual scale.
It started with a routine chest CT scan six months ago. The radiology department had scanned from chest to kidneys. Three weeks after the scan, I managed to get an appointment to hear the scan results. “Look, you’ve got cancer in both kidneys,” exclaimed my pulmonologist. Excitedly, she pointed to a screen with black, gray and white marks on it. I took her word for it. Not sharing her enthusiasm, I didn’t react.
There was no time to talk about my lungs on that visit. Rather, there was a flurry of activity around scheduling an abdomen scan to see the kidney more clearly. Within a week it was confirmed that I needed a specialist.
My history kept me calm and objective. In 1991, I had been diagnosed with lung cancer. I had been coughing up blood from my lungs, something that was not new. After a CT scan, the pulmonologist at the time, told me I needed surgery to remove my whole right lung. I took the CT scan to a second pulmonologist who said: “Yes, it could be cancer. And with your lungs, the surgery could kill you.”
Since I said no to that first diagnosing doctor in 1991, he actually called my husband and enrolled him in the idea of surgery for me. Figuring I could die if I did, or die if I didn’t, I refused. Nothing bad happened as a result.
With that experience in my background, I decided not to worry about anything until I knew for sure. The thought of having two cancerous kidneys would at times shock my mind, and I would remind myself that I did not have any physical pain. I knew I had to focus on the possibility the CT scan was wrong.