Tuesday, November 25, 2008

Thoughts on Gratitude This Thanksgiving

Thanksgiving is my favorite holiday. Great food, low stress, but mostly, it's a reminder of all that we have. When I think of all that I'm grateful for, I become overwhelmed. Cancer does that. It makes you appreciate what's important.

First and foremost, I'm thankful that I am almost tumor free. For someone with an extremely rare cancer for which there is no conventional treatment, that's pretty nifty. I have Dr. Georgiades and his wonderful staff to thank for that.

I'm thankful for my circle of friends and family who have been with me through the good and the bad. Knowing that I'm not alone is the best healing agent of all. You know who you are, and I can never thank you enough.

I'm thankful for my medical team - conventional and alternative - and I hope that someday they can meet each other.

I'm thankful that this country will see new leadership soon, and in these difficult times, we need leadership.

I'm thankful for my home, my job and the incredible support my company has given me, my slightly neurotic dog, whom I love to pieces, Bruce Springsteen's upcoming new album and tour, and all the little things, like soy ice cream and snow days.

I'm thankful for my faith and my spiritual journey - one which leads me to amazing places and people who take my breath away with their wisdom and relevance.

And I'm also thankful for the perspective that cancer has given me. I have experienced many angles of cancer:

You are cancer free / You have metastasis and will need systemic treatment for the time that you have left;

We're going to treat this like every other invasive breast cancer, so you will need 8 rounds of chemotherapy / There is no chemotherapy that will work for your type of cancer;

Maybe radiation is an option / You have too many tumors for radiation;

We've removed part of your lung already, and we'll operate again if we need to / Your tumors are inoperable;

We're sorry and we wish you the best of luck / We can ablate all 8 of your remaining metastatic tumors.

These experiences have given me a window into a disease that allows me to relate to just about any cancer survivor. Although it's been a rough road, I think that this perspective is a gift, and I'm grateful for it.

Lastly, I'm thankful for this very moment and the potential of the next.

Happy Thanksgiving!



Sunday, November 23, 2008

Another Successful RFA

On November 18th, exactly two weeks after my last RFA on November 4th, I went back to Johns Hopkins for another ablation, this time on my left lung. Dr. Georgiades successfully ablated two more tumors, bringing the total ablation count to six. I now only have two small tumors, also in my left lung, which we will go after early next year. This last RFA was a little bumpy. My lung collapsed about 10%, but we were able to fix it with a small chest tube. I never felt any symptoms from it, but I needed to stay in the hospital an extra day to have it corrected. This is called a pneumothorax and it happens every now and then when a lung is pierced during a procedure or surgery.

Recovering from an ablation has been different each of the three times I’ve had this done. I find it interesting how the body reacts differently to an assault based on the location of the battlefield. The recovery time is usually 2 or 3 days, possibly followed by a little soreness for about a week. Sometimes the soreness is in places that are nowhere near where you would expect it to be. This is known as referred pain. Sometimes I had a cough after an ablation, as my body rallied to recover itself from the inflammation caused by the burning of the tumor and surrounding tissue.

Because I was given conscious sedation, or twilight sleep, instead of general anesthesia, I drifted in and out during each procedure. I like seeing and hearing what’s happening, and Dr. Georgiades is really good at explaining what he’s doing at each step. Of course I’m pretty groggy, so I only remember bits and pieces, but I would rather catch as much of the action as possible, since I’m pretty fascinated by RFA procedures and what they offer.

I’ll get a follow up PET/CT scan in late January, after all the inflammation has subsided, to make sure that all 6 ablated tumors are completely dead, and to decide when to ablate the last two. That will give my body a chance to fully recover from a pretty active month. I’m still in disbelief that all 11 tumors that were found in or since October 2006 will soon be history (3 removed surgically in 2006 and 8 by RFA). There is so much to be grateful for this Thanksgiving season.



Sunday, November 16, 2008

Every Team Needs A Captain

One of the many things I am grateful for, this Thanksgiving season and every day, is the relationship I have with my oncologist, Dr. Francis Forte from Englewood, New Jersey. I met Dr. Forte in the Fall of 2004. My previous oncologist stopped accepting Aetna and I had to find someone new. Finding a new cancer doctor when you have been diagnosed with an extremely rare disease is like looking for a parent. The fit has to be a good one. I met an amazing woman at my support group who spoke of her oncologist as though he were a member of her family. Phyllis and I met toward the end of her battle with breast cancer, but she made an incredible impact on me. (To this day I sometimes ask myself, “What would Phyllis do?”) By the time Phyllis was diagnosed with breast cancer, she had already broken a bone from metastatic disease. Most thought that she has a very short time to live. Under the care of Dr. Forte she lived for 6 ½ more years. I consider Dr. Forte to be a gift from Phyllis.

In October of 2006, when 10 nodules were found in both of my lungs, I had part of my left lung removed (a lung resection). When I was told that my cancer has spread and was now officially incurable - Dr. Forte understood the shock, fear and panic that took over me. But he went to work. He said that we wanted me to go to Memorial Sloan Kettering Cancer Center in New York to confirm the diagnosis. And he asked me for a little time to research how best to treat me. When he called a few days later to say that ACCB doesn’t respond to chemotherapy, he described the research that I later found in my own search for answers. Because it grows so slowly, by the time the cancer cells divide and grow, any presence of chemotherapy has already left the body. Dr. Forte said that if my tumors grew too much, additional surgery would be the next step, although we didn’t think that this would be necessary for many years, if at all.

To prepare for my consultation at Sloan, I made a binder of my research and I gave a copy to Dr. Forte. Since then we have become partners, in a sense. He’s still the Captain. I don’t make a move without his blessing. But he understands my need to understand my cancer – however little information there is about it. He read the binder, and with his 40+ years of experience, explains things to me that help me to feel in control.

When I learned 6 months ago that my tumors were growing, I was devastated. I was doing everything that Sloan recommended, eating right, exercising, taking alternative treatments and supplements recommended by my biochemist and nutritionist, and was convinced that the tumors were at bay. Dr. Forte saw my face as I looked at the CT report, and immediately said, “Didn’t you see something on TV about a technique that burns the tumors out one by one?” Thus began my voyage into the land of RFA.

Having snapped me back into Take Action mode, I did more research, this time on alternative cancer treatments. I made another binder and again, I gave a copy to Dr. Forte. This time the binder contained research that was pretty far out of the box. I thought that I’d have to make a pitch for his approval to try some of the treatments. Instead, he did not object to anything, as long as it didn’t hurt me or damage my immune system. I found myself saying, “Are you sure?”

Oncology is the science of cancer drugs. I can’t take cancer drugs. Dr. Forte could have done what some doctors have done to me. He could have wished me the best of luck. But instead he develops strategies with me. He listens. He asks me how things are going in the rest of my life. He tells me that I'm doing a good job. A few months ago he said, “I have learned a lot from you. I only hope that I can be of some benefit to you too.” Can you imagine a doctor saying that to a patient? Who could ask for a better Captain?



Sunday, November 2, 2008

Radiofrequency Ablation - RFA

When I met with my oncologist this past May and he showed me the CT report describing the growth of my lung tumors, he reminded me that I told him of a technique last year that kills tumors one by one. “Maybe it’s time to pursue that,” he said, just before panic set in. I went through my DVR recordings and found the Discovery Channel special, Living With Cancer, that I mentioned in my October 26th post. Leroy Sievers had a procedure called a radiofrequency ablation, or RFA, performed on camera, and that procedure has influenced my cancer status dramatically. There is quite a lot of information about this procedure online (a basic Google search will bring up volumes), but few patients know about it, and were it not for Leroy, I wouldn’t know about it either.

I researched and found the doctor that performed three ablations on Leroy, and I went to see him. His name is Dr. Christos Georgiades and he is at Johns Hopkins Hospital in Baltimore. At our consultation, Dr. Georgiades said that he could ablate all 8 of my tumors. My relief was indescribable. Although it may be uncommon to ablate as many as 8 tumors in any one location, he recognized that, because Adenoid Cystic Carcinoma of the Breast (ACCB) grows so slowly, RFA could be of tremendous benefit to me. The doctor I saw on TV was telling me, basically, that he could save my life – or at least prolong it for a really long time.

There was just one problem. Although most of the lesions were on the periphery of my lungs, one was right next to my aortic arch – the superhighway of my heart. In his interview with Ted Koppel, Dr. Georgiades said, “There are limitations. For example, if a part of a tumor is too close to a critical structure like the heart or a major blood vessel, we may not be able to perform this procedure.” After consulting with thoracic surgeons from two hospitals, I was told, for different reasons, that surgery to remove this tumor was not an option. And since surgeons don’t want to operate if all the cancer can’t be removed, they wished me the best of luck. But Dr. Georgiades saw a way to safely perform the ablation without risking a “catastrophic complication” with the superhighway.

On August 28th, I had my first RFA procedure. Dr. Georgiades ablated the tumor by my aorta and another one in my right lung. This was done under a live CT machine with a needle that carries very high frequency electricity and essentially burns away the tumors along with a small margin of tissue. I was under conscious sedation and I was in no pain. I was sore for a few days, but I was able to return to work quickly with almost no discomfort. It takes several months for the inflammation to recede completely, but I’m confident that this procedure was successful. On November 4th, I returned for a second procedure to kill the two remaining tumors in my right lung. Again, I was feeling almost 100% recovered after a few days, and I can’t even find the marks where the ablations occurred. I’m scheduled for a third RFA, this time on my left lung, on November 18th, after which I will only have two tumors left.

Here is what I learned since pursuing RFA as a treatment option: Interventional Radiology (IR) is a new field of cancer treatment that offers RFA for tumors in the lungs, liver, bones and kidneys, as long as they are smaller than 3 or 4 cm. This procedure can be a life saving option, especially for patients who cannot have surgery. In addition to RFA, interventional radiology offers a number of minimally invasive techniques that have the potential to change the face of cancer treatment in the next few decades. It’s important to find an interventional radiologist who has done this a lot and knows the techniques well. Often these doctors are not marketed by their hospitals very well, so patients may need to do some research to find them. Some insurance companies may not cover IR techniques because they are still relatively new. But I am lucky that my health insurance covers RFA procedures and that Johns Hopkins accepts my insurance, which is Aetna.

After many tests and scans, I’ve been told that the lung tumors are the only detectable cancer in my body. But eliminating them doesn't eliminate metastatic disease. I still have to figure out how to curtail the metastasis and send it into dormancy. No one really knows how my cancer spreads, so this is a big project. At first I thought it was arrogant to think that I could rein in metastatic disease when my cancer only occurs in a handful of people worldwide. But as I stumbled upon various medical practitioners and scientists who not only offer their expertise, but actually listen to what I have to say and respect my choices, it doesn’t seem so crazy anymore. Dr. Georgiades is one of those people, and I’m very grateful to him and his staff.



"You Have A Very Rare Cancer"

My story is a bit complicated. The best way to summarize the first 7 years of my journey might be to publish some excerpts from a speech I gave May 2007, at a Relay For Life event.

In 1998 I noticed a dull, constant soreness in my left breast and went for my first mammogram at the age of 38. No mass was found, and I was told that I shouldn’t worry about it because “pain is not a symptom of breast cancer.” A year or so later I noticed a lump in that same area, which was still painful. As it grew, I went for another mammogram, was sent for a biopsy, and was diagnosed with a very rare form of breast cancer called Adenoid Cystic Carcinoma of the Breast, or ACCB. This is a cancer that usually attacks glands in the head and neck, and because there are also glands in the breast, it can occur there too. When it does, it’s very slow growing and the prognosis is excellent. But few doctors have seen ACCB because it only occurs in less than .1% of all breast cancers. It’s even more rare for this disease to metastasize, which “rarely, if ever” happens, according to the articles I found then.

Fast forward 6 years, after a successful lumpectomy, 8 rounds of chemotherapy, 35 radiation treatments and being declared “cancer free,” to October of 2006. I went for my first chest CT scan and was told that I had 10 lung nodules sprayed across both lungs. Most were small, but one was large enough to sound the alarm bell. After a PET/CT scan and a lung biopsy that was inconclusive, I found myself planning to go back on the operating table, this time to remove part of my left lung. When I woke up from the surgery, I was told that it was indeed metastasis from the cancer that I had 6 years ago.

For about a week and a half I felt caught between shock, denial and mental free fall. I felt like I was living inside a Picasso painting – everything that resembled something familiar was distorted and frozen in time. I knew that metastasis meant that chemotherapy would become a way of life for the time that I had left. Then my oncologist called to tell me that, after consulting with several other doctors and reviewing the literature, he learned that my disease doesn’t respond to any known chemotherapy. I could hardly supress my relief. My biggest medical fear has never been cancer, it's been chemotherapy. I started to step out of the Picasso painting. When I asked him about treatment, he said, “there is no treatment – at least that we know of right now.” The painting got closer. He said that if the nodules grow to the point where they obstruct my breathing, we’ll operate again and remove what we can.

So I stopped planning my memorial service and started researching my disease. The largest and most comprehensive study of ACCB reviewed the literature from 1945 to 2002 worldwide, and found only 182 cases. Of those, metastasis occurred in only 14 cases (7.7% of the less than .1%) Instead of falling back into the painting, a new one presented itself – a blank canvas with a great big question mark....

The good news is that my cancer grows very, very slowly, and goes into periods of dormancy. I have never had any symptoms, as this was discovered by accident. The bad news is that no one is researching my disease because there are so few of us to study.... After exhaustive research, I decided to tackle this myself. I set out on a quest for alternative treatments and implemented a number of lifestyle changes. I still have 7 nodules in my lungs, but they haven’t grown since they were discovered, and I have never felt better, physically or mentally.

Cancer brings life into laser sharp focus. Priorities become clear, as well as the realization that the present moment is all we ever have. Every one of us has a blank canvas with a great big question mark on it. As we fill it in, and as it is sometimes filled in for us, we celebrate life, count our blessings, and control what we can....

In May 2008, a year after I wrote that speech, I learned that all of my remaining tumors were growing. Although they were still relatively small, some had doubled in size.

This put me back into research mode, coupled with numerous consultations with medical doctors from both conventional and non-conventional practices. And my journey took a whole new turn.