Hard times come, and hard times go... Yeah just to come again

I'm a nester.  It's all about comfort for me.  My massage therapist, Marty, begins each session telling me to imagine a place that makes me happy.  He suggests a beach, the mountains, a favorite vacation spot.  I imagine lying on my new couch, with the softest throw ever made and Sadie sleeping on my lap.  It's the best Happy Place I could ever hope for.  Comfort is serving an important role in my life these days.  It buffers what most would see as bad news.

I received the Hopkins interpretation of the scans I had earlier this month in Pittsburgh.  They show new areas of cancer in my lungs, some old areas that have grown, and some that have stayed the same.  The most dangerous tumor in the hilar region that has already been ablated and radiated seems to be stable.  But because it is still active, it's still very dangerous.  Also, it was reported that some tumors in the lining of my lungs (the pleura) are infiltrating my chest wall.  Other scary things are described to the point of being overwhelming. However, everything that's growing isn't growing super fast and nothing is measuring too big to treat. The problem is that there is too much to treat.  

I can't really say that this is a surprise.  I've had bad scans before and somehow my doctors have managed to address everything one crisis at a time.  But now that I have such trouble breathing, the risk benefit analysis of continuing with the Whack-A-Mole approach becomes questionable, as Dr. Georgiades wrote to me.  Every ablation requires a 1 cm. margin that kills healthy tissue to ensure the ablation is successful.  Every radiation plan also kills some healthy tissue and creates scarring as the beams travel to and from the targeted area. Considering all my past procedures, my remaining lung mass needs to be preserved as much as possible (I lost about 30% over 3 surgeries).  

With the shortness of breath and wheezing I now have, I have to consider the impact on the quality of life that more Whack-A-Mole would have.  I'm reminded of Joe Biden.  If I'm going to be in this race, I need to decide if I have what it takes before my window of opportunity closes.  Time for more opinions.  Many ACC patients go to radiation oncologists who offer proton beam radiation. Standard radiation is with photons.  One is just as precise as the other, but proton therapy is a newer technique that eliminates the "exit path" of the beam. "Higher doses of radiation can be used to control and manage cancer while significantly reducing damage to healthy tissue and vital organs."  Hopkins is building a proton center, but it won't be ready until 2017.  There are 15 proton centers in the US and a couple of them have seem many, many ACC patients.  Looks like I'll have a road trip or two to talk to the doctors who have treated so many of my ACC brothers and sisters.

In the meantime, I am having my tumors genetically profiled by two separate labs to determine if I have any cancer mutations.  If I do, there may be a clinical trial open that targets that particular mutation.  I should know the results of these tests in a month or two.  Having one or more mutations doesn't give me more options per se. But it would get me closer to the possibility of finding a drug that might stop my tumors from growing -- or, best case scenario, shrinking them -- for awhile.  Most trial results so far only show that the drug works until ACC finds a way around it.  This disease is a monster.  But it's still a hopeful time for us.  Science is moving so fast, cancer is being redefined by genetic research.  Since there's a lot of money to be made from this, innovation is moving at warp speed.

Back to Marty.  When I shared my news with him, he asked me how I'm coping with it all and if I'm okay.  I really am, for two reasons.  1.  I'm getting used to this roller coaster.  My stomach still lurches as I plunge downward.  But I don't puke with fear like I used to.  I think this is because I have recovered from circumstances that appeared hopeless. Statistically, I never should have lived through leukemia in 2009 or the many ACC battles since then.  2.  I'm focusing on comfort.  My nesting nature is in high gear.  As I slowly taper off steroids (given to see if they help my breathing), my mind spins with ideas for increasing comfort.  I decided to buy an adjustable bed. I often have to prop myself up in the middle of the night to help me breathe, so it made sense. And since I was headed for a hospital bed at some point in the future, why not get a plush, super comfy memory foam bed now, while I can enjoy it? Normal people are getting them, according to the commercials, so I don't feel like a cancer-patient-hospital-bed person.  My new Happy Place, with all its bells and whistles, was delivered on Friday, it fits perfectly in my bed frame, it is beautiful, and my sleep is amazing!  With a wireless remote to control the head, feet and massage features, I'm too happy to be depressed.  Sadie was very suspicious.  I watched with evil curiosity to see if, upon raising the feet, she was cat-a-pulted as a projectile to the top of the bed!  (Thanks, Laura, for the pun.  I'm sure Cheryl will appreciate it.)  

I've found that Retail Therapy is good for my psyche.  Comfort through consumerism.  As I look forward to Thanksgiving with Mary and her family in Pittsburgh for the first time, I can't be anything other than grateful for my new life, regardless of what the next chapter reveals.  As much as people deny it, we're all living on borrowed time.  I just have a little more information on the time I have left than most people do.  Make every day Thanksgiving. Find comfort in your life.  Buy an adjustable bed.

Kathy

CANcer + HEALth = CAN HEAL

"Tomorrow there'll be sunshine and all this darkness past"

How is it that Bruce always know just the right thing to say?  He's my inspiration for getting through this latest medical drama.  He's coming back to NJ in September, then to Pittsburgh in October (Mary and her family have no idea what they're in for) and to Glendale, AZ in December (get ready AZ friends).  There's a lot to do and I don't have time for drama.

In the month since my last post, I've been very busy.  The upshot is that things are going better than I could have hoped for, given the grim choices outlined in my last post.  

Although the biopsy confirmed that the "hot" spots are definitely cancer,  Dr. Georgiades successfully ablated the trickiest tumor of the bunch - the one in the hilar region of the right lung.  Now that that one is out of the way, Dr. Elmann will surgically remove the last two tumors with a VATS resection (a minimally invasive surgery that's done with scopes and a camera) on the left lung on Monday, August 13th.  I should be home in time to get tickets on Friday morning for Bruce's Pittsburgh show.  I'm in much better shape now than I was last summer, so recovery from this surgery should be manageable and relatively short.  Then this nightmare will be over!  

I know everyone was hoping the "hot" spots were a return of the  MAI infection, rather than cancer.  But Dr. G assured me that the tumors are old spots that we've been watching since 2008.  The fact that they grew and went from cold to hot is not a huge surprise.  If they were new spots, then I'd be pissed.  The fact that they're old means that they've probably been there since I first got ACCB in 2000. Knowing this made a HUGE difference in my outlook on all this.  

So, where's the drama?  Between the biopsy on the left lung on July 13th and the ablation on the right on July 20th, both lungs collapsed 25% about a week after each procedure, and I spent the last two weekends in hospitals.  Here are some highlights:

• When I was just about to get sedation for the July 20th ablation at Hopkins, Dr. G told me that I had a pneumothorax (partially collapsed lung) from the biopsy the previous week and that we would have to postpone the procedure.  I put my foot down, which was hard to do because I was already face down on the OR table, strapped in with an oxygen mask on my face.  I took off the mask, looked up at Dr. G and wagged my finger back and forth, saying "No, no, no.  Here's the new plan.  You're going to insert a chest tube to fix this and we're going forward with the ablation."  Resigned, he agreed and we were off to the land of ablations.  The Operative Notes documented my insistence, which I found pretty funny.  The ablation was even trickier than the first one I had in 2008 when Dr. G had to pull a tumor way from my aorta with his magic needle to avoid a "catastrophic event."  The hilar region is a complicated mesh of arteries, veins, ligaments, lymphatic and bronchial vessels, often called the "root of the lung."  Squished in there was the tumor.  Three manufacturers' representatives observed from afar because Dr. G chose to use a new cutting-edge needle to control the burning of the tumor in such a vital area.   Dr. G had to position his needle parallel to and in between two blood vessels in order to successfully ablate the tumor. 

• As he told me about this afterward, he said, "You remember that I told you I'm leaving?"   Dr. G is not one to joke around.  "What?!"  "Yes, I'm moving my family to Cyprus so that we can be closer to the rest of my family."  I felt conflicted between the good news of the ablation and the panic that was rising like an awakened volcano.  "When were you going to tell me?" I asked like a jilted teenager.  "I told you in the OR."  "I was unconscious!"  Typical passive aggressive man, I thought, breaking up at someone's most vulnerable moment.  "There aren't a lot of jobs over there, and it's kind of unstable, isn't it?"  I was trying to selfishly negotiate Dr. G's future.  Turns out the American Medical Center on Cyprus is building an entire surgical suite just for Dr. G.  He's leaving me in the hands of his closest colleague, Dr. Kelvin Hong, who co-wrote the gold standard textbook on ablations with Dr. G.  When someone saves your life, it's easy to become attached.  Dr. G knew this and handled my emotional response with humility and understanding.  I will miss him.  (Did I mention that he came in to ablate this tumor on a vacation day?)  I hope Dr. Hong can handle me.  We met briefly and he's very nice (he provided "technical assistance" during the ablation).  I'll see him for a follow up PET/CT in October.

If all this wasn't enough, I've been fighting a battle with Comcast for the last month.  Apparently, Maplewood has an agreement with Comcast for sole cable rights.  I've had no less than 8 appointments since July 9th and my service is still not fixed.  Here's my advice for all you Comcast victims:  1.  Always ask for a supervisor and get their name, direct phone number and ID; 2.  For billing problems, ask for the Retention Department so that they know you're really mad and about to cancel your account (even if you can't because your city is holding you hostage to a specific cable company); 3.  Always ask for an in-house technician for service calls.  If you don't do this, a contractor, who gets paid by the job and can't wait to leave your house for the next appointment, will make everything worse and drive you insane.

In the midst of all this craziness, I was surprised and grateful to learn that the church I attend, Prospect Presbyterian Church, held an all day prayer vigil for me on August 1st.  I'm not officially a member of this church, but I've been a supporter for a number of years.  I  am so thankful for their support and kindness.  Pastor Rick and Bruce have an equally optimistic view of the future, and I lean on this through good days and bad.  My countless thanks to them and all of you who have been in my corner through this last battle. 

Kathy

CANcer + HEALth = CAN HEAL

I did NOT see this coming.

“To be fully alive, fully human, and completely awake is to be continually thrown out of the nest.” Pema Chödrön  (Thanks, Georgette, for the amazing quote.)

I must be fully alive, fully human, and completely awake all right, because in the last two weeks, I was tossed out of the nest, again. I thought I was used to crashing and burning, eating dirt, and having to triage my wounds. But you never get used to it.

On a blistering June 20th, I drove down to Baltimore to ready myself for a follow up PET/CT (a combination of two scans) with Dr. Georgiades at Johns Hopkins Hospital. After the test, Dr. G. gently informed me that there were four new "hot spots" that now need to be treated. "Hot" usually equals cancer. "We need to make a plan," he said, seeing me deflate before his eyes. "Yes, a plan," I echoed. I did not see this nest-tossing-splat-on-the-ground coming. 

Let's recap: Before the days of leukemia, you may remember that my fight was limited to a head and neck cancer that appeared in a gland in my breast in 2000 (the treatment for which gave me leukemia nine years later), called Adenoid Cystic Carcinoma of the Breast (ACCB). Ten metastatic tumors were found in my lungs in October 2006 and after one left lung surgery and four radiofrequency ablations (RFA), they were all either removed or killed. I was back in the nest for awhile.

Fast forward to today:  We had been watching one left lung lesion that grew a little since 2008, so I scheduled another RFA for the day after my tests, just in case something sketchy appeared. With this new "hot spot" news, Dr. G. ablated one of the spots the next day, and I drove home the day after without so much as a band-aid. It was the easiest surgery ever. But because two of the remaining three are in dangerous locations, he felt RFA was too unsafe, and he wanted me to consult with my surgeon. I negotiated hard, but he stuck to his guns and used the 'ol "it's for your own safety" argument. 

Crushed, I sent my reports and images to my surgeon, Dr. Elmann, and pretty much spun out of control last week waiting for an appointment to make a new plan. Assuming this may require two surgeries, one on the left lung and one on the right, I braced myself for another medical leave from work and months of pain and crankiness.

Today, yes Sunday, I finally met with my Dr. Elmann, and he threw me a curve ball. Last summer, because my immune system had been destroyed and I couldn't fight off infections, I developed a whopping lung infection called MAI (also MAC). Dr. Elmann removed a large mass in September (not the easiest surgery ever), but I couldn't have the super extreme oral medications that some people get because I was too weak, underweight, and my GI track was shot. Dr. Elmann now thinks these "hot spots" are a return of the MAI infection. Cancer and MAI both show up as "hot" on a PET/CT scan and they look the same. They may not be cancer at all!

Finally, a plan:  Biopsy at least two of the hot spots in the left lung to see what we're dealing with.  If the biopsy comes back as MAI, I will begin the super extreme drug regimen (with lots of possible creepy side effects) for 10-12 months with repeat CTs to make sure the spots are going away.

If the biopsy comes back as cancer, I'll have another laparoscopic surgery on the left lung to remove the spots that are in bad locations, and return to Dr. G. for an ablation on the last tricky spot in the right lung. Dr. Elmann actually thinks RFA may be the safer option (I know Dr. G. can do it!), even though it's tricky, because surgery on this lesion would mean removing an entire lobe of my right lung with a gut-me-like-a-fish procedure that I can't even bring myself to describe. That's not going to happen. Trust me on this.  Although Dr. Elmann made me wait a week for an appointment, he's the first surgeon who ever recommended surgery as a last resort. 

I doubt that Pema Chödrön had infection v. cancer in mind when she wrote about being "fully alive, fully human, and completely awake."  Now able to move beyond my imagined injuries resulting from this latest tossing from the nest, I have once again returned from the Dark Side.  The rest of 2012 may suck a little, but at least there's a good chance that these dramas will soon end and I can climb back into the nest for awhile.

Kathy

CANcer + HEALth = CAN HEAL

Life's Extremes

Why is life always so extreme?  I wouldn't mind a couple of years of boring and uneventful.  How we respond to extremes may be the only thing that we can control when they stop us in our tracks.  Sometimes it's easy.  Here's an example:

Not satisfied with the plan to wait 3 months to figure out if the lung lesion I wrote about in my last couple of posts is a tumor or an infection, I asked Dr. Rowley if there was something more we could do.  He suggested a follow up chest CT to compare to the PET/CT a month earlier.  (A CT shows much more detail than a PET, which is a broader scan from mid skull to mid thigh.  A PET/CT combines both, with the CT honing in on a specific area.)  I sent the images to Dr. Georgiades at Johns Hopkins, and he called me with unexpected news.  He said that the lesion has gotten smaller, and that he thinks it's an infection because "cancer doesn't shrink by itself."  I told him I was never so happy to have a lung infection!  No tumor, no need for an ablation!  I was so relieved, I walked around dazed for quite a while.  Avoiding a surgical procedure is huge, since every medical intervention seems to have a domino effect on the progress of my recovery.  This news bolsters my theory that maybe the lung metastases have all been killed.  One would think that any lingering cancer seeds would have sprouted at a time when I had absolutely no immune system, right?  Responding to this extreme was easy. 

But I still have a lung infection to deal with.  Once we learned that the lesion is an infection, I began a course of heavy duty antibiotics, which, predictably, is wreaking havoc on my stomach.  I can barely eat anything, and as I write this, I dread my next attempt at a meal.  I'm down to 90 pounds and very tired.  I've realized the difference between energy and stamina.  Energy can be rallied short term.  Stamina is a whole different ballgame.  It's tempting to turn my exciting news into something negative, but I remind myself that these symptoms are a welcome alternative to having a lung tumor.

Here's an example of an extreme that's not so easy to respond to: 

Two weeks ago I received a call from my friend Linda's husband, Joe.  I met Linda during my pre-transplant chemo treatments last September.  She was also fighting relapsed AML and we shared the same basic game plan to beat leukemia for the second time.  We both had unrelated male donors, likely from Europe, and Linda got her bone marrow transplant the day after I got my stem cell transplant.   We became friends and kept up with each other after leaving the hospital.  Joe was calling to tell me that Linda had relapsed again.  I was devastated.  Joe was devastated.  I couldn't even imagine how their 3 sons, young men just figuring out what to do with their lives, were coping.  I tried to call on all the spiritual principles I know to be true, to find a way to process this horrible news, but I came up empty.  The next day I learned that Linda had had a stroke the night before.  This was a major setback because it left her too weak to receive treatment for the leukemia.

AML produces immature white blood cells that grow like crazy, forming a sludge in the bloodstream.  Healthy blood can't get to vital organs because of this sludge and, if I were to guess, this is why she had the stroke.  Normally, someone in this situation would receive more chemotherapy to put them into remission before receiving an infusion of lymphocytes from the donor.  Lymphocytes are among several different types of white blood cells.  They produce "natural killer cells," or NK cells, which kill cancer.  A lymphocyte infusion is the best shot for recovery from relapse within a year of transplant.  It's kind of a long shot, but it's usually the best shot.  Unfortunately for Linda, the stroke kept her from being able to receive chemo, which would have been the necessary first step.

Linda is now in hospice.  I've seen her several times, and Linda herself is showing me a different way to respond to this unthinkable situation.  She is facing her death with such grace, it's hard to stay in a place of fear.  She is surrounded by so many people who love her, all she has to do is put out her hand and there's someone there to take it.  In knowing that, she seems free.  It's the most amazing thing to witness.

After so many terrifying free falls over the past 11 years on this roller coaster called cancer, I really thought I had a handle on death.  Watching myself respond to Linda's tragic relapse, I realize that I'm not as advanced as I thought.  But I'm closer, only because Joe, Marc, Jon, Michael and their wonderful family have allowed me to be a part of their last two weeks.  Pain and grief are in the forecast.   There's no avoiding it.  For me, I hope to temper these feelings by focusing on Linda's incredible will and the love that surrounds her.

The extremes of life are what we remember the most, the times that make us either grow, or break us.  The choice -- which I think is the hardest thing we face -- is up to us.

Kathy
CANcer + HEALth = CAN HEAL

Change of Plans

At the beginning of my last post, I posed the question,

If you have to deal with not so good news, is it better to find out about it and take action when things are  "back to normal" or when things are kind of better but not so great?

The plan for ablating the newly discovered lesion in my right lung on June 15th has been put on hold for three months.  It appears that taking action when I'm stronger and things are, well, closer to "back to normal," is a better way to go.

I took my reports from Johns Hopkins to Dr. Rowley, who reminded me that three things can "light up" on a PET/CT: inflammation, infection and cancer.  Dr. Rowley suspects that the lesion might actually be an infection rather than a tumor, which would be great news!  (I never thought I'd be hoping for a lung infection.)  He also told me that inflammation from a radiofrequency ablation may trigger GVHD.  That would not be good.  Ablating an infection instead of a tumor would also not be good.  He consulted with Dr. Georgiades and they decided that, since ACCB grows so slowly, it's better to ablate when we are able to confirm that the lesion really is a tumor and when I'm not at risk for triggering GVHD.  The plan now is to have a chest CT in two weeks to see, what, if any changes appear.  Because I haven't had any symptoms of infection, I suspect that the new lesion is a tumor, and if it is, I'm off in September for RFA #5 to ablate tumor #8.  In any event, that lesion shouldn't get too comfortable....

Other aspects of my recovery are status quo:  I'm still having trouble eating, my appetite is pitiful, the tremors are coming back as I taper off the steroids for the third time, and I'm still hovering around 93 pounds.  On the upside, I feel like I'm getting stronger, I'm able to do more, and I'm seeing more friends and extended family than I have for the last nine months.  Because my blood counts are so good, it's safe for me to resume some of the things I used to do (like going to church, taking walks, etc.) and this keeps me sane.  I've also been going to support groups, through which I've been able to network with other survivors and learn about projects, research and events relating to blood cancers.

Although my days are busy when I'm feeling well, I'm antsy to get on with it.  Enough with this recovery stuff.  I never imagined that I'd measure my progress by the seasons.  Transplants are hard on people with Type A personalities.  I've never been a very patient patient.  But that's how it is, and I'll get there eventually.  The most important thing is that I'm in remission and I'm getting stronger.  If only someone would tell my tummy!  For now, I have three immediate goals:  recover enough to return to work, get rid of this lung lesion one way or another, and get medical clearance for a glass of pinot noir!  That's not too much to ask, is it?

Cheers!
Kathy

CANcer + HEALth = CAN HEAL

Being One for the Records

If you have to deal with not so good news, is it better to find out about it and take action when things are  "back to normal" or when things are kind of better but not so great? I didn't have much of a choice this week. I received some not so great news on Thursday when I had a PET/CT scan at Johns Hopkins. I learned that I have a new tumor in my right lung. I was surprised and disappointed, but as I've been telling people, one new tumor is better than twelve. I know this sounds strange, but in the grand scheme of things, one metastatic lung tumor, for me, is not really that big of a deal. I know what it is and what to do.

As you may remember (it seems so long ago), 10 tumors were discovered in my lungs in October of 2006. Three were removed surgically, and when the pathology confirmed metastatic disease from Adenoid Cystic Carcinoma of the Breast (ACCB) --  the first cancer diagnoses in 2000 -- the remaining seven were killed with radiofrequency ablation (RFA) at Johns Hopkins in Baltimore by Dr. Georgiades.  (See November 2008 posts.)

When I got my first negative PET/CT report showing "no detectable cancer" in September 2009, you may also remember that I threw myself a Negative PET Scan Party in October to celebrate. Two days after the party I became very ill and drove myself to the ER. The next morning I was told that I had an aggressive form of leukemia (AML) and was given a very grim prognosis. And the games began for cancer #2.  (See 10/22/09 post, Nothing Like a Good Party Before a Storm.)

When Dr. Georgiades showed me an image of the tumor from the scan on Thursday, I asked him why this happened. It was a stupid question. He could have said, "because it's cancer, dummy." But he knew what I meant. If cancer were to show up again, I thought it would be the 2 or 3 little tiny spots that he calls ditzels that we've been watching for the past 3 years and are too small to ablate. Where did this new one come from? He suspects that if I had a cancer seed, which otherwise may have just sat there forever, that seed may have grown into a tumor because I trashed my immune system. It popped up before my new immune system kicked in. It makes sense given the last 1 1/2 years (minus the 5 months I was in remission before the relapse) of being treated with an alarming amount of toxic medicines and chemotherapy, the last of which destroyed my bone marrow permanently.

Here's the positive spin on this new tumor situation: When I asked about the ditzels, Dr. Georgiades told me that they've actually gotten smaller. If I grew a new lung tumor, wouldn't you think that a weak immune system would have allowed the ditzels to grow too? Maybe that means that the ditzels aren't cancer after all. As I've said before, we all have spots on our lungs because our world has become filthy and our lungs are filters, like sponges. A lot of different kinds of junk gets stored up in a sponge over time. Only the spots that light up on a PET scan and grow over time are likely to be cancer.

Plus, I only have one tumor. If I had lots of dormant seeds it stands to reason, like the ditzels, that they would have grown too. Yes, I was pretty bummed out driving home from Baltimore. But mainly, I was upset about having to go through another procedure to deal with cancer, especially now. But knowing what's going on is better than not knowing what's going on. And the tumor isn't going away. Let's just kill the killer and get on with it.

Needing to exert as much control as possible, I called one of Dr. Gerogiades' nurses from the hospital lobby and tentatively scheduled the RFA for June 15th. It's a same day procedure, which I've had four times before, so I don't expect much drama. I'll stay with my cousin, Karen, who graciously puts me up every time I make the trek to Hopkins. A week after the RFA I probably won't have a single physical sign that anything was done -- not even a band-aid at the site. It's a pretty amazing procedure (see 11/2/08 post, Radiofrequency Ablation - RFA).  Anyone new to this blog who is curious about this 10 minute treatment can click here to watch a short video, filmed for the documentary that led me to Dr. Georgiades in the first place.

After all my pre-transplant tests were completed last October, I met with Dr. Rowley, my transplant doctor. He said, "the only thing I'm slightly concerned about is the cancer that was found to have spread to your lungs." "Oh, that" I said, dismissing him with a wave of my hand. "That's completely under control. It grows very slowly, can remain dormant for decades, and everything that's been identified as cancer has been killed. Because ACCB is so rare, you won't find much about it. It only occurs in <.1% of all breast cancer patients and of those it metastasizes in about 6% of the cases. There's only a few of us, maybe a couple of dozen at most since the 1940s." "Yes," he said. "And of those few, how many have had transplants?" "Oh, right. Probably none," I realized, feeling again, like the only one on the planet with my ridiculously rare medical circumstances.  Oh wait.  I probably am the only one on the planet....

Several people have suggested that I write a book.  Who would believe it?  I have a hard time believing it myself.  Being "one for the records" can be a scary thing.  But at a certain point, it also becomes humorous -- one of those "oh, paleez" situations.  I'm determined to win this prolonged battle and use my unique misfortune to contribute somehow to the landscape of knowledge on two very different diseases.  But before I can do that, I need to get off this rickety and dangerous roller coaster once and for all.  On June 15th, I'll be one step closer.

Kathy
CANcer + HEALth = CAN HEAL

Good News Among World Tragedy

My heart grows heavier every day as I watch the events unfold in Japan.  Relief efforts become more and more difficult because of the radiation exposure, and people can't get the supplies and medical attention they need.  The younger generations face a significant risk in years to come of thyroid cancer and, you guessed it, leukemia.  My prayers are with all the people of Japan, but especially the 50 nuclear power plant workers who are trying to prevent further disaster.  They are the martyrs in this tragedy. 

It's hard to celebrate happy things when so many people are suffering.   But I do have reason to celebrate.  My bone marrow biopsy showed "no evidence of residual leukemia," and the chromosome analysis (cytogenetics) shows "a normal male donor" in all cells analyzed.  This means that I am in complete remission and the report could not have been better!  My relief is indescribable.  When I was first diagnosed, my biopsies revealed an abnormal chromosome, the inversion 16 or 16i.  This was seen as a "favorable" marker because people with AML who had 16i did well long term, once in remission.  I was an exception, as usual, and I relapsed.  But when any abnormalities show up, they indicate the presence of leukemia.  I was very happy to read on the report, "no consistent numerical or structural chromosome abnormalities were observed."  Also, another test, called a Chimerism, showed that in the two of the ten blood lines where leukemia shows up (the white cells and the lymphocytes) my bone marrow is 99% converted to a male donor. 

As with any transplant patient with an unrelated donor, I will be at highest risk for relapse for the first two years, then my chances of being completely cured will go way up.  It's possible that some rogue leukemia cells escaped the chemotherapy and radiation, and that my new stem cells don't find them to kill them.  But because I've had two bouts of GVHD (graft v. host disease), and we know that the stem cells are fighting me, we can assume that graph v. tumor is also taking place, and that my new immune system would also kill any leukemia cells it finds. 

My other good news is that the CMV virus, for which I've been treated since late December, seems to be under control, finally.  All medications for this virus are very intense and have terrible side effects (blasting headaches, kidney damage, etc.), but I'm now on pills that I'm tolerating and are working.  In fact, since I don't need long IV infusions of these creepy drugs, the PICC line was taken out of my arm and I no longer have a central line for the first time since November.  I'm free!  This makes me feel less like a cancer patient and more like a regular person.

I'll be completely off the steroids, and hopefully through with the CMV pills, by the beginning of April and by mid April I should feel physically stronger and able to gain some weight.  The progress that most transplant patients experience by three months will take me about five, but with the overall transplant a success so far, I am grateful to be here and to be turning a corner.  I'm looking forward to the next phase of recovery -- physical therapy to regain my muscles, eating non-stop to achieve a three digit weight, taking walks, and building my stamina to return to work.

Cancer is a tough war to fight.  This has been an especially tough tour of duty and it's not over yet.  The battle fatigue is difficult for an impatient person like me.  Sometimes, when I think of all the phases of fighting I've faced over the past ten years, I am reminded of the soldiers who found themselves under the stop-loss policy in the Iraq and Afghanistan wars [the involuntary extension of a soldier's active duty in order to send them back to the front lines over and over again].  I don't mean to compare the two experiences, but the concept struck a nerve.

Overall, I'm optimistic about my future.  I've seen enough of the front lines.  Yes, technically I will always have metastasized breast cancer, although ACCB is not really breast cancer.  But with Dr. Georgiades at Johns Hopkins and his radiofrequency ablation magic, we'll handle that if necessary.  No problem.  I'm committed to living a very long life and dying of something other than cancer. 

I send my thoughts and prayers out to those in Japan fighting their own horrible war.  They too are on the front lines, battle fatigued and scared.  I find comfort, gratitude and respect for the good samaritans there are helping people they don't even know in any way that they can.  I'm also glad to see relief pouring in from so many counties.  Now is the time, as with many times in the recent past, for generosity, compassion and recognition of all the good things we take for granted.

In love and faith,
Kathy

CANcer + HEALth = CAN HEAL

My Own Version of Fireworks

June came and went as fast as fireworks explode and disappear. It was great to get back to the firm, working again with the people who gave me so much support. When I paused to catch my breath, it was the 4th of July -- a time for family, friends, BBQ and red-white-and-blue cupcakes. Almost as soon as I returned home from a grand fireworks display, I headed out on I95 toward Johns Hopkins to see Dr. Georgiades for another PET/CT scan. I now have a juggling act to maintain, making sure that cancer no. 2, Acute Myeloid Leukemia (AML) doesn't stir up cancer no. 1, Adenoid Cystic Carcinoma of the Breast (ACCB). This was a trip to check on cancer no. 1.

In late April, my last PET scan showed a "hot spot," which did not show up on the CT part of the test. Since there was no good explanation for this discrepancy, we decided to repeat the test in 2 months. I could feel myself getting weary, thinking about having to have another radiofrequency ablation (RFA) so soon after finishing treatment for leukemia. But my spirits were lifted as soon as Dr. Georgiades entered the room. He usually comes in with copies of images from the PET/CT, hot off the radiologist's digital griddle. Or he comes in with drawings of my lungs, showing spots where previous tumors have been killed, along with sites of untreated tumors. This time he was empty handed. The hot spot had disappeared, and nothing was lighting up anywhere! No evidence of cancer -- only the same few little ditzels that haven't changed in the 2 years I've been going to Hopkins. I don't have to go back for another scan until January. I'll always need to be followed because cancer no. 1 grows so slowly. It's been known to show up after decades of dormancy. But I can't complain about that. At least we can see it coming and zap it in its tracks.

Driving back from Baltimore in 105 degree heat, as the fireworks were going off in my head, my heart, and my ex-disease ridden lungs, two things occurred to me: 1. Killing metastatic tumors often results in more tumors growing back, sometimes more aggressively. Cancer finds new pathways when the old ones are destroyed. That hasn't happened to me.  2. Having my bone marrow completely destroyed by tons of chemotherapy may have easily triggered any remaining lung metastasis to become active. Without an immune system, it stands to reason that another lingering cancer that doesn't respond to chemotherapy would have had a field day. That hasn't happened either.

I'm tempted to have a party! Oh, but wait. The last time I had a party to celebrate good PET/CT results, I was diagnosed with leukemia 48 hours later. My next milestone will be next month, when I will have another bone marrow biopsy. Unfortunately, these quarterly stabbings are the only way to confirm remission. Until then, I'll celebrate the simple things in life, like my cat, Sadie, and all her feline antics. And Snowball, the dancing cockatoo. I love Snowball. He dances like there's no tomorrow.  I learned of him on CBS Sunday Morning, and I think he's my new best friend. My favorite performance is Another One Bites the Dust, but he also takes the music of the Backstreet Boys, Lady Gaga and Stevie Nicks to a whole new level.  I wonder what Sadie would think of Snowball.  And another version of fireworks is born...

Kathy

CANcer + HEALth = CAN HEAL

Sometimes we don't really notice just how good it can get.

Rob Thomas' lyrics to the song Someday express the relief and gratitude I've been feeling in the last week or so. My March Madness finally came to an end when I was finally released from Englewood Hospital on March 29th. Yes, all my blood counts, including those stubborn neutrophils, finally came back and are now showing off as normal. That was almost as much of a relief as my next bit of news: The results of the April 16th bone marrow biopsy showed a complete molecular remission - no sign of leukemia or leukemia markers (like the inversion 16 chromosome) at the genetic level! No more chemo! It looks like I'll be able to keep the Gold Medal that the Universe loaned to me when I had my first molecular remission in December. I am happy beyond words and once again feel as though I've been spared a terrible fate. I have also come to appreciate how happy news like this is for Dr. Forte and other committed doctors who work in cancer fields. He told me that outcomes like this are why he is an oncologist.

We agreed that, to be sure of this remission, I should have another bone marrow biopsy in 5 weeks (scheduled for May 20th), after which I can resume my pre-leukemia life. Of course, nothing will be completely the same after such an ordeal. But feeling good, not anticipating illness, and getting back to work will do wonders for my psyche, which, by the way, has survived the wounds of battle and is happy for each new day. That's the scoop for cancer no. 2.

As for cancer no. 1, the Adenoid Cystic Carcinoma of the breast, ACCB, with lung metastasis, I'm doing pretty well there too. I went to Johns Hopkins for a PET/CT this week and there is only one questionable lesion that needs to be watched. One "hot spot" in my right lung lit up on the PET scan, but didn't light up on the CT scan. This is unusual, as CTs are more detailed than PETs, and the area on the CT is vague and undefined. It would be tricky for Dr. Georgiades to ablate with radiofrequency ablation (RFA) because the procedure is CT guided and he needs clearly defined margins to get the entire lesion. We decided to repeat the tests in June to see if there is any change. The other possibility, although remote, is that it's leftover pneumonia from my chemo complications in January. The suspected lesion isn't growing, so there's no harm in making sure it's really cancer before ablating.

[The PET actually showed a second hot spot on my lowest left rib. This was a total mystery because it also did not show up on the CT. Dr. Georgiades thought that this might be inflammation from a cracked a rib because I was sore from working out for the first time in 6 months. This made sense since chemotherapy weakens bones. It turns out that a tiny drop of the radioactive isotope that is injected before the PET/CT somehow got on my skin and showed up as another lesion. Because it was so odd, given my history, Dr. Georgiades investigated the finding with the PET radiologists and discovered that the isotope was outside my body, not inside. He called me today to tell me that this hot spot has been re-designated as "contamination," and not to worry. He's awesome.]

The bottom line is that one small lesion, whether it's new or residual from a previous ablation, is not that big of a deal. It could be a lot worse. Although this was not a totally clean PET/CT, I'm not really concerned. I've reached the point where having to have a tumor burned out of my chest presents more of a scheduling challenge than it does fear of additional cancer. Funny how that attitude has evolved. The leukemia adventure presented so many potentially life threatening challenges that somehow I was able to overcome, I started imagining myself as Jack Bauer on 24. That guy just keeps getting up. With the help of my medical team, I've been able to make it to the end of the day.

Sometimes we don't really notice just how good it can get. At this point in my life, believe me, I've noticed.

Kathy

CANcer + HEALth = CAN HEAL

Touchdown!

Let's hear it for putting some points on the board! I went for a PET/CT scan at Hopkins yesterday, and was told that I am "negative for cancer, positive for inflammation." Dr. Georgiades said that cancer gets brighter and bigger on a PET/CT. My tumor sites have either gone completely dark (meaning that the tumors are dead and gone forever) or they are collapsing and getting dimmer - no longer a "hot spot." The inflammation is just a leftover side effect of the radiofrequency ablations (RFAs). This will disappear completely with time. Not only that, no new lesions were found and the little "ditzels" (tiny spots that are only 1 or 2 ml. - too small to declare as anything definitively) have not changed. I don't have to go back for more tests for 6 months. (By the way, the reason that a nuclear glucose isotope is injected through an IV to make the cancer "light up" on a PET scan is because cancer is hungry for sugar and the glucose in the IV provides the food. No wonder there's a correlation between sugar and the rise in cancer rates. Click here for more on this.)

As I mentioned in previous posts, I can never use the words "cancer free," "cured," or "remission." I will never be able to leave the football field, but I'm in the end zone, as close to claiming "no detectable cancer," or "no viable evidence of tumor" as I'll ever be.

If I have learned anything in the last 14 months, I've learned that we never know what the next moment will bring. I believe that this is my first of many negative test results, so I will savor it for awhile. I will not, however, take it for granted, and no, I will not stop living my anticancer lifestyle just because my cancer has either been completely killed or has been beaten into dormancy. This disease is vicious. It deserves no slack. This is not just a game, it's the Super Bowl.

But for now, I'm doing the Victory Dance!

Kathy

CANcer + HEALth = CAN HEAL

On the One Yard Line

There's always that mix of feelings that creep over me when I go to Johns Hopkins to have a follow up PET/CT scan and a consultation with Dr. Georgiades: anticipation, nervousness, excitement, and the need to take deep breaths. On June 2nd, I received some great news:

Not only have all the ablated tumors shrunk in size, but they are also "dimmer" on the PET/CT, which means that the cancer has been killed and the inflammation caused by the radiofrequency ablations (RFAs) is disappearing. In fact, some of the tumors aren't even "lighting up" on the test at all! One such tumor is the one that was ablated during the last RFA that I had on March 3rd. Because of a small pneumothorax - collapse of the lung - during the procedure, Dr. Georgiades wasn't sure that he got the whole thing, which was one of the main reasons for this follow up appointment. Oh, and there's more: The test also showed that no new tumors have appeared, and the tiny little spots that were too small to characterize haven't grown. To me, this was the best news of all. Because no one knows how my disease spreads, we can't tell if, during these last two years of growth, all the cancer has revealed itself, or if there's more. We still don't know that, but worse case scenario, it looks as though we've stopped the growth. Best case scenario is that maybe, possibly, hopefully, we've killed it all. I'm happy and extremely grateful either way.

The plan is for me to have another PET/CT in September, when we can see if more tumors become even dimmer or stop lighting up due to the healing process. After I left Johns Hopkins that day, I felt that I not only made a touchdown, but that I had won the whole damn game! That's the way it is with cancer, every good report feels like a Super Bowl win. But the reality of metastasis is that we're never really out of the game. The season never ends.

After I got home, I started thinking about this, and I wrote this question to Dr. Georgiades:

I know that the terms, "cancer free," "cured," and "remission" will never be appropriate for someone like me. But do you think that someday I might be able to say that I'm "tumor free?"

Here is what he wrote back:

The problem is that even our best tests are not 100% accurate. We are following your disease with PET/CT, which is indeed the best test in this case, but its accuracy is about 92-95%. If and when one day the PET/CT is entirely negative (and given the way things are going now, there is a good chance it may happen) what we can say is: Based on our best test there is no evidence of viable tumor. Irrespective of that, however, we will need to follow up for life because of the possibility of a new lesion showing up.

That's Dr. Georgiades' diplomatic way of saying, "We really can't ever say 'tumor free' either, but things are looking good." That's ok, "no evidence of viable tumor" is good enough for me.

Kathy

CANcer + HEALth = CAN HEAL

Busy Couple of Months

I am happy to report that my last radiofrequency ablation (RFA) was successful, with almost no side effects whatsoever -- very little soreness, no cough, etc. Because of the location of the tumor, I had a small pneumothorax (collapsed lung), which we anticipated. This means that Dr. Georgiades is only about 80% sure that he ablated the entire tumor, but I'm confident that he got it all. If not, he'll do another RFA and finish the job. It's not that big of a deal in the grand scheme of things. (I told Dr. Georgiades that I think of him as Yoda, teaching his young Jedi Knights how to ward off evil with their magic light sabers, or RFA needles. He was not as receptive to this analogy as was the Fellow who was assisting with my RFA that day. The young doctor seemed excited at the prospect of sharing my analogy with his entire class.)

So where do I stand now? We believe that all "declared" or "detectable" tumors have been killed! I do still have 3 or 4 tiny spots on my lungs, but we can't tell what they are. Lots of people have spots on their lungs because we live and breathe in a dirty world. But unless they grow to a point where they light up on a PET/CT scan, I am going to assume that I have no traceable cancer anywhere in my body. I can't even begin to express how it feels to say that. It's pretty amazing and staggering. It stops me in my tracks.

I reported earlier that I had a total of 11 tumors since being diagnosed with lung metastases. I had 3 removed surgically in October 2006, and 7 have been ablated in the last 6 months. Either the last one disappeared (which is unlikely, given the growth pattern of all the other tumors), or it shrank down to one of the tiny spots that we're now following, or it may have been double counted. In any case, it's hard to keep track of these things because the lobes of the lungs are shaped in all kinds of crazy ways, and doctors are trained to follow what's there at the time, not what might have been as seen on prior scans, taken at a different hospital using different equipment. I'm just taking things one scan at a time. My next PET/CT will be at the beginning of June. We'll be able to tell at that time whether this last tumor is completely dead, and if there's been any changes with the other tiny spots. I will never be "cancer free," "cured," or categorized as "in remission," but, thanks to Yoda, I think I'm close to being "tumor free" right now, and it feels pretty good!

I'm very grateful and relieved that this last ablation was the easiest one to tolerate, but it was not without drama. The ablation was originally scheduled for February 12th. However, it had to be postponed because my dog - a sweet Silky terrier with a major fear aggression problem (which I thought was under control), turned on me one night and bit off a chunk of the top of my ear. Although the piece of ear was too small to sew back on, I was lucky that my ear filled in and I recovered completely. My dog was a stray, found by a shelter. He had the aggression problem, unknown to me at the time, when I adopted him a year ago. Since this was not the first time he bit me, I had to make a difficult decision. I gave him back to the shelter, where he will now live as a permanent part of the shelter's pack. I think that he'll be happier around other dogs and more people, and although I adored him, I'll be safer and under less stress. Anyway, the bite to my ear introduced a threat of infection, which caused the ablation to be postponed.

Next, I started having gallbladder pain. Gallbladder polyps were first detected on a CT scan last August. The pain was extreme and came and went for over a week. Since my blood work didn't show any infection or inflammation, and I didn't have a fever or chills, Dr. Georgiades said that I could go forward with the ablation, which had been re-scheduled for March 3rd. I headed down to the Baltimore/D.C. area the day before the ablation, as I usually do, but ended up driving straight to the emergency room at Johns Hopkins because the pain was so bad. I was told that I had Biliary Colic, a condition usually caused by gallstones. It reminded me of a baby that cries all the time -- when I ate, my gallbladder screamed like a baby. I was advised to schedule a laparoscopic cholecystectomy to have it removed once I recovered from the ablation. In addition to the morphine shots every two hours and a consult with a surgeon at 3 a.m., I had a roommate that makes this story read like a bad Scrubs episode. She was a sweet elderly woman, a bit senile, with insomnia. She would hit the overhead florescent light button instead of the nurse’s call bell, tried to watch the news at 5 a.m. after I finally got to sleep, and asked my cousin, who flew in from Pittsburgh to be with me, to give her an enema. I could go on, but it would be too much information. The next morning I went for the ablation completely exhausted, with a morphine headache. But once the ablation was over and I got a good night's rest, I was as good as new.

I drove home last Thursday, went to work Friday and Monday, and had another 911 gallbladder attack on Monday night. I ended up at the emergency room again on Tuesday, this time closer to home, had my gallbladder removed on Wednesday, and came home yesterday. I'm doing really well – just resting at home feeling a bit like a blowfish. I'm glad the attacks are over and I no longer have to worry about the polyps, which, if they grew, could have become cancerous. My surgeon said that I could have had gallstones in addition to the polyps, or the polyps themselves could have caused the pain if one or more were blocking the bile ducts. The pathology report should be interesting.

Looking back on the last two weeks, I hardly remember that I had an ablation. Looking back on the last two months, I'm ready for a break! Since late January, I've shared a bout of food poisoning (possibly the Nurovirus or Cruise Ship Virus) with about 25 others who attended a client function at my firm, had the top of my ear bitten off by my dog, resulting in a heart breaking separation, had a tumor burned out of my chest, and had my gallbladder sucked out of my belly button. I'd say that constitutes a busy couple of months.

Here's to a calm, relaxing, healthy Spring!

Kathy

CANcer + HEALth = CAN HEAL

Almost in the End Zone – One More Ablation

Regardless of who you routed for, that Super Bowl was a hell of a game. (The best part, for me, was the halftime show with Bruce and the E Street Band.) That game sort of reminded me of the road that I’ve been on for the past few years: I couldn't tell who was winning from one play to the next. Cancer lends itself to a lot of football analogies. I scored field goal last week when I went for a PET/CT scan and got some great news.

Getting a follow up scan always brings up mixed feelings. I look forward to finding out if the good health that I feel is really betraying me on the inside. I want as much information as possible, but I dread that feeling of free fall if the news is negative. I fantasize about being told that my cancer is regressing, becoming undetectable. I know that day will come. I can’t tell you why I know that. I just do. It may be years from now, and the ride getting there may be bumpy, but eventually this period of activity will die down and go dormant.

So off to Hopkins I went last Friday for a PET scan and a consult with Dr. Georgiades. I could tell that the news was good from his demeanor. No new tumors. Best of all: the tumors that were ablated at the end of August, including the one that was right next to my aorta, are toast. And from all indications – there is still some inflammation from the two ablations in November – the other four tumors that were ablated also appear to be completely dead. I wasn’t surprised to hear this, since I was extremely positive about RFA and its potential for my type of cancer, but I still felt shaky with the good news and emotionally raw. I think I have a heightened appreciation for the relief that the passengers of Flight 1549 must have felt when they finally stepped out of icy water and onto solid ground. That’s what getting good scan results feels like: stepping onto solid ground.

I still have a few little spots, what Dr. Georgiades calls ditzels. But because they are so small, he’s not willing to declare them as tumors right now. One of them, however, looks a little bit fuller, and because it’s in the neighborhood of a major bronchus that supplies 90% of the oxygen to my lower right lung, he thinks that we should ablate it before it becomes risky. So I’m scheduled for one more RFA procedure on my lower right lung on Thursday, February 12th. Since I’ve had time to recover from the last two ablations in November, I’m hoping this will be a same day procedure. I’m thinking of it as an odd little act of love for myself this Valentine’s Day. More importantly, it’s one step closer to a touchdown.

Kathy

CANcer + HEALth = CAN HEAL

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.

Kathy

CANcer + HEALth = CAN HEAL

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.

Kathy

CANcer + HEALth = CAN HEAL