This is f*cked up.

No wonder I'm not really into the Holidays.  For the past several years they've coincided with medical nightmares.  I thought that this year would be different.  Oh, so close.

It was time for my yearly breast ultrasound, which I stagger with a yearly mammogram on a 6 month rolling basis.  I scheduled this for last Thursday, just before my monthly visit with Dr. Forte -- the greatest oncologist on the planet.  I could tell by watching the technician's face that it was going to be a bad day.  A mass was found in my left breast, the same breast where ACC was found in 2000.  After a painful fine needle aspiration and an even more painful core needle biopsy, the radiologist confirmed that it was indeed cancer.  My stomach dropped.  Again.  I've never known Adenoid Cystic Carcinoma of the Breast (ACCB) to reoccur in the original site after treatment.  My head was spinning.

By the time I got to my appointment with Dr. Forte, the slides had been read and he told me that this is a completely different cancer from ACC.  A totally new cancer diagnosis!  We both sat there for a minute, speechless.  All I could say was, "This is f*cked up."  I'm pretty sure I said that several times during that appointment.  He said that the pathologist thinks it's just run-of-the-mill invasive ductal carcinoma, IDC.  Up to 80% of all breast cancers are IDC.  Although it's a very common cancer, and I don't have to seek out specialists this time, it's a whole new ballgame.  It's a whole new everything.  Starting over.

Driving home that night I felt like my body has been turned into one big medical torture chamber.  I turned up the radio as my long time friend read my mind.

Hell's brewing, dark sun's on the rise
This storm will blow through, by and by
House is on fire, vipers in the grass
Little revenge and this too shall pass

This too shall pass, yeah I'm gonna pray
Right now, all I got's this lonesome day

                                       Bruce Springsteen, Lonesome Day

The details of the plan have yet to be determined.  But here's what I know so far:  I'm in very good hands at Englewood Hospital and Medical Center.  Dr. Forte has treated this kind of cancer hundreds of times.  He has always been invested in my care and was very upset with this development.  He's practically a family member.  He said he was probably going to go home and cry.  I was oddly comforted by that.  Dr. V. Merle McIntosh is the Chief of Breast Surgery and is the best at what she does.  I will meet with her on Thursday to schedule a date for surgery.  She said that, with my medical history, we need to be super careful not to be too aggressive.  The driving questions will be whether we can get clean margins and if the cancer has already spread to any lymph nodes.  This will determine the stage and where to go from there.  

Dr. McIntosh told me to bring my "folder of test results."  I'm very OCD when is comes to keeping organized.  I have four levels of medical records:  1. My four page Medical Summary and List of Medications for my purse; 2.  My portable 5x7 notebook with all my lists and blank paper for taking notes at appointments; 3.  My files for each doctor; and 4. the Big Kahuna -- my 4" binder of all my test results, divided by types of tests.  I'll have to use my backpack on wheels on Thursday.  The Big Kahuna is just too heavy.

So far, 2015 kind of sucks.  From all I learned about breast cancer during my first six years of survivorship -- when I erroneously thought that ACC of the breast was a type of breast cancer -- this shouldn't be as steep a roller coaster as ACC has been.  Hopefully, this won't set my plans for moving back too far.  I need a change of scenery, that's for sure.

Armed with my Kindle, Apple iTV, Amazon Fire Stick, Fresh Direct grocery delivery and take-out menus, Sadie and I will settle into an all-too-familiar routine.  It's all in a day's work.

Kathy
CANcer + HEALth = CAN HEAL

Finish Lines

It's the season for finish lines.  The New York City Marathon is today.  Over 47,000 are expected to cross the finish line.  October was Breast Cancer Awareness Month.  Lots of walks and races for that.  And there were two very successful, rewarding and important Light The Night Walks on October 15th with Lowenstein Sandler teams in Morristown, NJ and in Palo Alto, CA.  Those were great finish lines.

  The NJ/NY team surpassed our goal of $8,000, raising $9,158, and the Palo Alto team overshot their $500 goal, raising $708!  I'm so proud at everyone at the firm who worked so hard to make this happen.  From the generous donations to the pizza party, bake sale, and countless paper balloons sales, supporters and survivors in the Lowenstein family showed up in one way or another for this important cause.  

It was a blustery but beautiful night, and the ceremonies were moving and inspiring.  Here's a shot of some of the 20+ people from the NJ/NY team who walked for a cure for all blood cancers.  (Thanks, Jeseñia, for the photos.)

I was happy that my friend Bertha, from the Leukemia and Lymphoma Society support group that I attend, was able to walk with us.  Bertha was diagnosed with not one, but two, different type of blood cancers, and is now in remission. 

Perhaps the most gratifying part of the Walk on a personal level was having the Federico family with me among hundreds of survivors, caregivers and supporters, as we paid tribute to Linda, my friend from Transplant World in Hackensack, who passed away in July.  I knew Linda would have been proud of Joe, Marc, Jon, Michael and friend, Andrew, for carrying the torch she so passionately wanted to keep lit. 

As I prepare to cross another finish line, I've come to realize that in Transplant World, the finish line is always moving.  The race is never really over, especially with a donor transplant. Even after the five year mark, when people are officially declared "cured," any shock to the immune system can trigger Graft vs. Host Disease (GVHD) or some other problem.  Take, for example, having lung surgery.   

About a month after the surgery, when I could finally take a breath and a step without pain, I developed what I call the Mystery Rash, along with a head cold.  GVHD has always shown up as rashes, so my heart sank as I thought of another 4-6 months of steroids lowering my immune system and setting me up for a host of bad things.  Almost everything I've suffered through since the transplant can be traced back to long term use of steroids to fight GVHD.  I practically came unhinged when I went to the doctor's office with my fears of backsliding.  I tried to stay calm, but my panic was obvious.  To my shock, my team didn't think it was GVHD, but they took a skin biopsy to be sure.  I was put on a low dose of steroids with a two month taper schedule to knock out the rash, whatever it was, and assured that the dose wasn't high enough to kick off the domino effect of complications.  That, in itself, was a major hurdle.  The skin biopsy came back negative for GVHD, and listed a variety of possible allergens, "including insect bites, drugs, ingestants and inhalants."  None of this made sense, since my medications hadn't changed, nor did anything I had been eating or inhaling, and I don't remember landing in a pile of bugs in the recent past.  But, just to cover all bases, my allergist and transplant team treated me in one way or another for all possibilities.  Yes, even bug bites.  After a month of misery, the Mystery Rash is finally gone and I'll finish the steroid taper at the end of the month.

The head cold lingered and eventually turned into a sinus infection, but this should clear up soon.  When it does, I think I might actually be pain free for the first time in over a year.  Plus, my energy is coming back, I'm starting to exercise, and I'm slowly pushing through a To Do list that I never thought I'd get to.

My next finish line is on November 17th, when I will be one year post transplant.  Clinically, this is a big deal.  Medical research measures outcomes in terms of one year survival rates.  The treatment options change should something bad happen, and statistically, most people who relapse will relapse in the first year.  For me, it means I will soon be off all my transplant related medications and can rebuild myself with an immune system that has finally taken over on its own.  I will honor my first birthday, knowing that the finish line will move again and again.  (I know better than to "celebrate," after the Negative PET Scan Party in October 2009 was followed two days later with the AML diagnosis.)

I went to see Dr. Forte last week, my long time oncologist and partner for all medical issues.  He asked me to prepare a timeline so that we could discuss all that has happened since the transplant.  It turned out to be 4 pages long with 17 test results.  Looking back at the last year, I was reminded of how rough it has been.  On the other hand, I remain in awe that this process actually works, that I'm doing so well compared to so many others who suffer much more serious complications, and that life will soon return to something resembling life before Transplant World. 

I am forever changed in countless ways by this last tour of duty in this war.  I'm taking it one finish line at a time.  By the time 2012 rolls around, I'll be ready for the next race, this time marking the milestones with health, strength, and continuing rebirth.

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

Wasn't Expecting That!

On day 21 of consolidation treatment no. 1, I crashed, hard. I woke up on Sunday, January 24th feeling weak and full of aches in my legs and back. I called the weekend on-call doctor, who said to come in. Shortly after friends brought me to Englewood, I became quite sick and began treatment for an oral infection and a fever that signaled what soon blossomed into pneumonia. That began a very difficult week of incredibly strong antibiotics that kept me from eating for 5 days and gave me some pretty creepy hallucinations. It was a bad week. By the next weekend, I had turned the corner on the infection and pneumonia, but within a few days I gained 23 pounds in water weight, which was exceptionally painful for someone who had barely eaten and weighed 100 pounds when admitted. Medical knowledge of antibiotic side effects is still at the most elementary, experimental level. No one knows what causes what, especially when drugs are combined and are being switched out as treatment goes on.

The good news is that my bone marrow, which was totally empty when I crashed, recovered fairly quickly and I was able to come home last Tuesday. I've had a lot of muscle pain due to low potassium, so my recovery has been slow. But I'm getting better every day. Thankfully my cousin, Mary, came from Pittsburgh again to be my advocate, cat sitter, personal assistant and overall angel. She helped me get home and settled before going back to her busy life. Once again, everyone rallied for me and I believe this played a huge part in getting through this set back.

Dr. Forte said that there wasn't anything I could have done differently to avoid what happened. In spite of the carefully calculated dose of chemotherapy for my height and weight, the dose was just too much. Treatment no. 2 will be significantly less, which will give me a better chance of getting through the crash without another hospital admission. Although I had visited with some out of town friends in the days prior to getting sick, infections from a suppressed immune system don't usually come from other people -- they come from my body's inability to colonize white cells to defend against bacteria within my own body.

On the bright side, any lingering leukemia cells had to have taken a major hit with this last adventure. Dr. Forte said that my slides look perfectly healthy, and no one would be able to tell that I ever had leukemia. Looking at the big picture, he said, we're winning the fight for permanent remission. I can't ask for anything better than that.

When I go for treatment no. 2 depends on how quickly I recover. I'll know more on Thursday when I go in for a check up. Now I'm just looking forward to getting back on track and watching a good Super Bowl game tonight. I'll be routing for the underdog, the team whose city has been through hell and back. I guess that goes without saying.

Thank you, as always, for your love and support.

Kathy

CANcer + HEALth = CAN HEAL

How Did This Happen? Some Theories

The question, "How the hell did I get leukemia after beating a completely different cancer twice?" bounces around in my brain on a daily basis. Now that I've lived with this diagnosis for 3 months, I've settled in on a few possible explanations.

Theory No. 1
The obvious question is whether the first cancer, Adenoid Cystic Carcinoma of the Breast (ACCB) is related to the second, Acute Myeloid Leukemia (AML).

On October 13, 2009, the same day that Dr. Forte found something terribly wrong with my routine blood tests, and only 6 days before I was diagnosed with AML, I received an announcement about a huge research breakthrough from the Adenoid Cystic Carcinoma Research Foundation (ACCRF). A new cancer gene was found by researchers at the Sahlgrenska Academy in Sweden:

The gene causes an insidious form of glandular cancer usually in the head and neck and in women also in the breast. The discovery could lead to quicker and better diagnosis and more effective treatment....

The research group can now show that the gene is found in 100% of these tumours, which means that a genetic test can easily be used to make a correct diagnosis.

“Now that we know what the cancer is down to, we can also develop new and more effective treatments... says professor Göran Stenman, who heads the research group at the Lundberg Laboratory for Cancer Research at the Sahlgrenska Academy. “One possibility might be to develop a drug that quite simply turns off this gene.”

The newly discovered cancer gene is what is known as a fusion gene, created when two healthy genes join together as a result of a chromosome change.

“Previously it was thought that fusion genes pretty much only caused leukaemia, but our group can now show that this type of cancer gene is also common in glandular cancer,” says Stenman.

That last point didn't seem as relevant to me on October 13th as it was on October 19th when I was told that I have leukemia. In fact, Dr. Forte told me after my first bone marrow biopsy that my cytogenetic tests contained fused leukemia cells. Maybe it's a coincidence, but I'm willing to consider the possibility that there's a connection between two seemingly unrelated cancers that are caused by fused chromosomes.

Theory No. 2
A simple review of the ACCB literature clearly demonstrates that chemotherapy is not recommended because ACCB grows too slowly to respond to chemotherapy. My first oncologist didn't take the time to research ACCB, and relied instead on a well known "expert on breast cancer" for my treatment plan. Together, they decided to treat my cancer "like any other invasive breast cancer," regardless of the fact that this was not typical breast cancer, but rather a glandular cancer. I was given 8 rounds of CMF, a cocktail of three drugs. One of these drugs, Cytoxan, is known to cause secondary cancers, the most common of which is AML. According to the American Cancer Society,

The cancer most often linked to chemotherapy as the cause is a type of leukemia called acute myelogenous leukemia (AML).... Studies of patients treated in the 1970s and 1980s have shown an increased risk of AML after certain types of chemotherapy drugs called alkylating agents were used to treat cancers like Hodgkin disease, non-Hodgkin lymphoma (NHL), ovarian, lung, and breast cancer.

Alkylating agents known to cause leukemia include:
cyclophosphamide (Cytoxan®)....

That "expert," when questioned in 2006 about the bad advice he gave my first oncologist in 2000, predictably denied ever recommending CMF. Needless to say, I switched oncologists and started going to Dr. Forte, who understood the nature of ACCB because he made time to do the necessary research. This is an example of why it's so important that we participate in the research process and not rely on one or even two doctors to decide something as life altering as cancer treatment.

Theory No. 3
From 1957 to 1975, Motorola Inc. used the degreasing agent trichlorethylene (TCE) to clean electronic parts made in its south Scottsdale, Arizona, plant. In early 1975, a significant amount of TCE had been dumped into the area around the plant and TCE had contaminated the groundwater. The area was identified as a Superfund site in 1983. My family moved to south Scottsdale, to the middle of the Superfund site, in 1967 when I was 7 years old. I lived there till I was 18. My mother, also a cancer survivor, still lives in that house. I'm told that the number of cancer cases in that area over the last several decades is staggering. (No liability was found in either the personal injury or the property damage class action suits.)

Research shows that AML can be caused by exposure to benzene, and there are plenty of lawsuits to back that up. Benzene finds its way into many Superfund sites because it's used in the manufacturing process of so many products. Who knows if growing up in the middle of the south Scottsdale Superfund site had anything to do with either of the chromosomal fusion-based cancers I've been fighting? It certainly didn't help.

Theory No. 4
All of the above.

Theory No. 5
None of the above.

The question, "How did I get cancer?" is one that haunts all cancer survivors. We wonder if there was something we did wrong, something we should have seen earlier. The fact is, cancer is random. It doesn't discriminate. All I can do at this point is focus on Theory No. 1 -- the new gene discovery that holds the most promise, hope for future answers and possible treatments for the cancers I've been dealt. In the meantime, we are obligated, whenever possible, to share our knowledge, our mistakes, and the resources we've stumbled across in our attempt to navigate these scary waters. Such is our task, as we put aside the question "Why?" and try to discover the good that can come from something so evil.

Kathy

CANcer + HEALth = CAN HEAL

Back in Another Blue Room at Hotel Englewood

Returning to a community hospital for a week is like coming back to a cheap, somewhat sadistic, motel. I arrived yesterday for the first of four rounds of chemotherapy. I'm in a shared room, although my roommate left yesterday and I'm hoping I can avoid another "guest" in my new blue room. (It's not that I don't like people. I just don't like sick people in my space when I'm already sick and cranky.)

The layout of the shared room is different, but it's basically the same overwhelmingly creepy experience. I try to make it work for me, as we all do when find ourselves with less than comfortable lodging arrangements that we can't change. There is a "housekeeping" department. Someone answers (most of the time) when I call the "front desk." Room service? Hmmm. That's a stretch. Trays of food are delivered on a somewhat regular basis, but the menu is limited and includes a lot of jello. The linens are changed everyday, and "Guest Services," which is actually called "Guest Services," stops in to ask if my stay is comfortable.

Upon arrival, I complained about the squeaky bed, asked for an extension string so that I could control the overhead light, and called the diet office to register my food restrictions – no dairy, no red meat, bottled water with every meal. Then I rearranged the chairs (claiming the recliner for my side of the room, in the spirit of what many office workers do when someone quits or is fired), asked for a second table for my laptop, plugged in all my chargers, ordered TV service, unpacked my suitcase and my carefully chosen "Kathy hospital food" backpack, labeled my grocery bag for the pantry refrigerator filled with almond milk, protein drinks and V8 juices, and settled in. It was nice to get a warm reception from the floor staff. Lots of people were very friendly and helpful, and I'm now able to see their faces without masks.

Englewood Hospital is not a bad representation of such medical "hotels." It's actually one of the better models. Many rate much lower. For a Zagat rated hospital, "reserve a reservation" at the Marburg wing of Johns Hopkins Hospital in Baltimore. It's a 5 star experience, which is why celebrities and royalty pay big bucks to stay there. I know this only because the hospital ran out of beds one time when I had to stay overnight after one of the radiofrequency ablation (RFA) procedures. Until the staff figured out that I was a "non-paying customer," they sent in a food server wearing a tuxedo to take my Tea Time order. But she disappeared before I thought to ask for a crumpet. For the right price, you can order lobster or whatever you crave, and you'll be served your favorite meal on fine china. The furniture is expensive cherry wood, and there's a full service lounge for family members to use, complete with computers and yummy snacks. And of course, there are flat screen TVs. Since I wasn't a paying customer, I doubt if my nurse would have accommodated a request for a foot massage, as she did with the woman down the hall.

Back to reality in the blue room. The chemo doses during consolidation are much stronger than they were during induction. The side effects so far, headache and nausea, are equally more intense. Dr. Forte says that the trick is to find drugs for the side effects that don't cause different, and worse, side effects.

I'll be here until Saturday morning, getting chemo on a Monday, Wednesday, Friday schedule, which is turning out to be a pain in the neck. I had to have a bunch of tests and procedures after I was admitted yesterday, so we didn't get the show on the road till 1:00 p.m. The chemo runs for 3 hours and is then repeated 12 hours later. This meant that I got yesterday's second dose from 1:00 a.m. to 4:00 a.m. this morning. Thankfully, I can just sleep through it and hope that the drugs for the side effects last through the night. At least today and Thursday are days off.

Once I return home, I'll recover for about a week till my immune system crashes and something gives out. Either I'll get sick from a fever or some infection and need to be readmitted, or my blood counts will be too low, I'll need transfusions, and need to be readmitted. Either way, I'm likely to end up back in an all too familiar blue isolation room again, with masks, in the middle of January until my counts climb to a safe level. Maybe it's time to propose a Reward Points Program for Hotel Englewood. I could earn a year of leukemia free test results, which I would then convert to a permanent reward somehow. I'll put that on my To Do list.

Kathy

CANcer + HEALth = CAN HEAL

A Special Christmas Gift

I can't think of anything that compares to the gift I received this Christmas. Dr. Forte gave me something neither one of us knew he had to give: the Gold Medal!

The plan for the next phase of treatment involves 4-8 months of intensive chemotherapy until the upside down chromosome #16, which acts like a marker for leukemia cells, disappears. Whether I receive 4 rounds of chemotherapy or 8 is dependent on the presence of 16i in my bone marrow. As soon as that marker is completely gone, I'll have one last treatment for good measure. Having qualified for the Olympics when no cancer cells were found under the microscope last week, the real competition takes place in the arena of cytogenetics - with chromosomal indicators like 16i telling us who's winning.

After a week of analysis by the cytogenetic experts, Dr. Forte left me a voicemail and an e-mail on Christmas Eve with "super duper good news": No 16i was found in my bone marrow from last week's biopsy at all! It's like the Olympic committee awarded me the Gold Medal now, and as long as I can hang onto it over the next 4 months, they'll let me keep it!

Although I'll still be in and out of the hospital receiving chemotherapy as planned, I will only need 4 rounds, and I won't need as many bone marrow biopsies along the way. The treatment is still necessary to increase my chances of a long term remission, and eventually - wait for it - a cure. I like the sound of that.

I can't wait to ask Dr. Forte in person how often, in his 45+ years of practice, he's seen this happen. I have a feeling I'm part of yet another rare statistic.

I think that the good and the bad of each twist and turn in this bumpy road of mine can be summed up with the question, "How is this possible?" I ask that question again, knowing that the disappearance of 16i at this stage in the game is truly remarkable. I can think of only one answer: the healing power of prayer. Countless people told me that they were praying for me, and I always knew that my voice was not alone. I thank all of you who were in that blue room with me, giving me strength and faith, reminding me to focus on the light rather than the dark. There is no greater gift we can give to each other and I am truly thankful and humbled by the collective compassion responsible for this magical Christmas gift.

Kathy

CANcer + HEALth = CAN HEAL

Induction Treatment, Day 26 and a Missed Opportunity

Well, I made it through round 2 of chemotherapy, which ended yesterday. It was harder than the first round because I barely started to recover my blood counts before my system was blasted again. I was weaker and the side effects were creepier. Today I began to brace myself for the next 7-10 days, which may be the roughest part of this mountainous climb. My bone marrow will fully crash this week, leaving me at risk for infection, bleeding and fevers. My goal was to stay off any antibiotics because the side effects made me sicker than the chemo. One day at a time, right?

This morning I discovered some tummy tenderness that concerned Dr. Forte. After x-rays, a CT scan for a better look-see and a consult with a surgeon, I sit here getting, not one, but two IV antibiotic drips. Ugh. I have been having fevers the past few nights, and with my tummy issues, I had no choice in this decision. It seems that all hell breaks loose the day after I finish chemo. I am reminded that complications are "normal" after chemo for leukemia. It makes sense. The bone marrow is assaulted 24 hours a day, and once the attacks stop, the body then realizes that it survived. It then tries to recover, but it takes a while to break through scorched terrain. I'm told that I have persevered "much better than most." Hmmm. I hate to think of what "most" go through.

Why the consult with a surgeon? To rule out any possibility that I may have an infected appendix. I know, crazy, right? The possibility of having any kind of surgery when I have no ability to heal or clot, is laughable. Thankfully, I just heard that the CT was negative and there is no indication that surgery is needed at all. That was a close one... Besides, I can't believe there is anything left to remove. Between all the surgical procedures I've had to my lungs and my abdomen since moving to New Jersey 10 years ago (wonder what that means), I could fit a Buick inside me!

The other day I had just taken a shower and was not yet hooked back up to my IV. Transport arrived to take me for a set of x-rays, so I went without the IV pump or pole. As I lay on the stretcher in the hallway outside of x-ray, I suddenly realized that no one was watching me. I was on the first floor, not far from the entrance. I could totally make a break for it! I had on my Lowenstein Sandler fleece, which covered up all my hospital wrist bands. I had a cap on my head, which is a dead giveaway that I'm a cancer patient, but it wasn't as bad as not having a cap. I gave this situation some serious thought. Of course I'd have to ditch the mask. The next issue was the slippers. Another giveaway. The biggest problem was the lack of cash for a taxi. If only I had my ATM card! I know I could have made it. I considered running away from home one time as a kid, after a fight with my parents. The lack of cash stopped me then too. I wish I didn't have so much Virgo in my chart...

I would have come back, once I visited my kitten (oh, wait, I forgot my house key too). But the disappointment and shock my escape would have caused Dr. Forte, when he is working so hard to cure me, kept me on my stretcher. A missed opportunity perhaps, but reason got the best of me.

I hoping for a less dramatic day tomorrow.

Kathy

CANcer + HEALth = CAN HEAL

Induction Treatment, Day 20

Almost half way there! The results of last week's bone marrow biopsy showed traces of residual leukemia, so I started a second round of 5 days of chemotherapy today. This is very common, and should not be seen as a sign that I'm not doing well. In fact, Dr. Forte and the oncology nurse said that I responded very well to treatment so far. Despite the secondary complications I had, some would even say that I "sailed through." This is not how I would describe it, given my extremely low energy levels, a fairly painful tooth infection, and the side effects from 12 days of 2 very strong antibiotics. But, compared to most, I'm told I did great, given how sick I was when I first came here on October 19th. Lots of leukemia patients have trouble with fevers, infections and bleeding when their bone marrow crashes, creating a domino effect with all sorts of serious problems, usually resulting in a stay in Intensive Care. So, all in all, I'm in pretty good shape.

I will be getting Idarubicin for 2 of the 5 days, and Cytarabine, or Ara-C, in a 24/7 continuous drip for all 5 days -- a little less than the 3/7 protocol for these same drugs that I received a couple of weeks ago. In about a week, the full effect of this second crash will begin and I'll again be at high risk for problems. But no one expects this second round to be any worse than the first, and now that my tooth infection is under control and I'm off the antibiotics, I should be fine. Then it's a matter of waiting for my blood levels to return to non-threatening levels.

Since it's the middle of flu season, we're being extra cautious. Dr. Forte is very protective of me, and he wants to treat me completely so that we can someday say that I've been cured. That's one reason he is treating me again with chemo. He said that because I was in such good health to begin with -- well, except for that whole metastatic cancer detour that distracted me on and off for the last few years -- there's no reason not to treat me with the tried and true protocol for AML, type M4 eos. The inversion 16 chromosome (the upside down gene on chromosome #16) will help in determining how much more treatment I will need in the months and years to come.

So, it's back to one day at a time. Dr. Forte said that my earliest departure date would be around December 6 or 7, assuming all goes well and my blood counts recover normally. I'm sad that I'll be here for my favorite holiday, but I should be home to Sadie, the goofy kitty, in time for our first Christmas together.

There are bright spots. I'll have peace of mind, with this second round of chemo, that we've done the most we can to do kill as much leukemia as possible before I go home. Any stray abnormal cells will be killed off during the 6-8 month consolidation phase of 3 days of Ara-C over 5 days once a month. Another bright spot is that you have all remembered me, here in the blue room. Lots of times when people go out on leave or disappear for medical reasons, it's easy to forget them because they're out of sight, out of mind. Or, the sick person reminds people of their own worse fears. I'm here to tell you that your worse fear is really not your worse fear. Things can always be worse. There's always a sliver lining to everything, even if you can't see it at first. My worse fear used to be, not cancer, but chemotherapy. Been there, done that. Actually, still doing that. Then my worse fear was dying of cancer. I just refuse to accept that as a possibility -- not after the war I've been through and am still fighting. As humans, we are always revising our worse fears, as we get older and we start collecting challenges to overcome. But I choose now to focus on my biggest blessings. It's way more fun and lots more rewarding. Besides, it's the season for counting blessings. Thank you all for your continued support and prayers.

Kathy

CANcer + HEALth = CAN HEAL

Induction Treatment, Day 13

I may have spoken a little too soon. No sooner did I hit the "publish" button on my last post, when the jaw pain that I referred to became quite a bit worse. By the next morning, the left side of my face began to swell and I realized that I had a tooth infection. A dentist was called in, but due to a miscommunication, he didn't come that day. By Friday morning, the left side of my face gave me a natural Halloween costume: Elephant Woman. The dentist came, I had a CT scan and began strong IV antibiotics, which in turn, wreaked havoc on my GI track. (Between 60%-70% of the immune system is in the GI track, so it's no wonder complications arise there when the immune system has crashed.)

For about 5 days I was on the hospital's version of liquid diet because my entire jaw was too sore to chew. Puréed carrots, puréed green beans, and puréed chicken - yes, chicken - got very old very quickly. Then I started getting this chicken colored Soylent Green stuff, which I couldn't even bear to look at. So I'm on liquids that my cousin, Mary, brought me and will hopefully graduate soon to food that my friend, Elissa, made for me. It's all about the food.

I am starting to feel better, having received several transfusions of blood and platelets. My face has resumed its normal proportions, and my energy is slowly returning. The Induction phase of treatment began on the first day of chemo, and it won't end till my blood counts tell Dr. Forte that it's over. Therefore, even though I ended chemo on Day 7, today is Day 13 of treatment. Little did I know that the week after chemo would be the worst.

Tomorrow I will probably have my second bone marrow biopsy to see if there are still leukemia cells present. If so, I will have 5 more days of chemo and then another period of crawling back to health. Although I would hate to have to extend my stay in the blue room, I would hate even more to have to return to it later.

Believe it or not, I am keeping busy. My blood levels determine how much I can actually get done each day: Watching movies from Netflix (thanks Vincent!), figuring out my new Kindle and ordering books to read (thanks Elissa and Dan!), returning e-mails and phone calls (thanks everyone!), uploading NPR broadcasts of This American Life to my IPOD (thanks Michael!), hearing reports about my kitten, Sadie, (thanks Betty and Cathie!), receiving the next batch of needed provisions (thanks Cathie and Jim!), my workouts (laps around the floor with my mask and IV pole so that I can get a glimpse of the changing trees), trying to catch my TV shows without my DVR, and my favorite part of the day: my shower - 15 minutes of complete privacy, untethered from my IV pole.

We're getting there. Day 13 is better than Day 1. As my friend Eliza reminded me recently, this too shall pass. One day at a time.

Kathy

CANcer + HEALth = CAN HEAL

Induction Treatment, Day 7: Last Day of Chemo (for now) and Some Good News

Well, this has been interesting. I expected to be wiped out, barely able to get around, nauseous all the time or worse. The types of chemo I've received don't really make me too sick, and I haven't needed any transfusions so far. The real side effects come with the crashing of my blood counts - the risks of infections, bleeding and fevers. I just started having some weird complications, such as jaw pain, heartburn and a nail infection. At most, I only need the anti-nausea medication once a day. I haven't lost my hair yet, but that should happen any day now. Later this afternoon I will start my last of this 7 day 24/7 infusion of Cytarabine, or Ara-C. Then I think I will get a break. My counts will continue to drop, and then slowly I will re-build my bone marrow. Once that happens, I'll have another bone marrow biopsy to see if I need more treatment.

Once I enter what's called Complete Remission, I may get a longer break before entering the Consolidation Phase. Consolidation is necessary to provide more therapy to eliminate non-detectable disease and prevent relapse — that is, achieve a cure. Typically, this means high doses of Ara-C for 3 of 5 days, once a month for 4-6 months, depending on my blood levels. I thought at first that this current 6 weeks of Induction would be the end of the chemo story, but this is only the first half of the equation. How I'll feel and how much I'll be able to do during Consolidation remains to be seen. All I care about right now is going into remission and getting well enough to go home to my kitty!

Dr. Forte called my room the other night and was very excited to deliver good news. There are subtypes of Acute Myeloid Leukemia, (AML), from M0-M7, and these subtypes have very different treatments and prognoses. I learned that I have M4 eos, which is much better than the more common M4. And he told me that I have a really cool chromosomal abnormality. Here's the lowdown:

The most important factor for predicting a prognosis is cytogenetics, or the chromosomal structure of the leukemic cell. Certain cytogenetic abnormalities are associated with very good outcomes, one of which is called inversion 16, or inv(16). This means that one of the genes on chromosome #16 is flipped. This is good because it's easy to detect and once it's found, I can get treatment before things go downhill. The upshot is that this wacky chromosome significantly increases my chances of long term survival and reduces my chances of a relapse.

Dr. Forte is also researching the possibility of other treatments that will further reduce my chances of a relapse. Even with a Complete Molecular Remission (the best kind of Complete Remission), some hidden cancer cells can still exist. Of course he doesn't want me to have anything that I don't need, and neither do I. But he is talking with a bunch of other doctors to come up with the best plan for me to be around long enough to die of something other than stupid cancer!

Today I read a new post in my favorite resource for anti-cancer prevention and general health, Anticancer, by Dr. David Servan-Schreiber, called Getting by with a little help from our friends. If these findings are true, I'm on my way to being the healthiest person I know, thanks to all of you who have helped in countless ways already!

Kathy

CANcer + HEALth = CAN HEAL

Induction Treatment, Day 4

I rarely find myself at a loss for words. I always have something to say about something. But the outpouring of love, support, prayers and well wishes is truly astounding and leaves me at a complete loss for words. I feel truly blessed, and I thank you all from the bottom of my heart. I must give a special shout out to my cousin Mary and my friend Cathie. Mary left her fabulous family in Pittsburgh on Friday to help me set up house in the hospital room that is to be my home till about the end of November. She is staying at my condo with my kitten and putting up with Sadie's crazy antics, while running to Trader Joe's, the bank and Petco. Cathie has been making the trek to Englewood on a regular basis, checking my mail and feeding Sadie when no one is there. Both have been indescribably helpful in talking with my parents and sister in Arizona, all of whom are very distressed about this whole situation. So many others have also reached out in so many ways, reminding me of the goodness of the human spirit.

After a week of living with this horrible diagnosis, the shock is wearing off. I'm gearing up for battle again. At first I felt very weary, like I imagine it might feel like to be called back to active military duty after fighting so hard and making it home in one piece. I just kept thinking, "Why is this happening now, when I finally got my first cancer under control? A little break would have been nice!" But these are unanswerable questions. Maybe someday I'll look back on this and gain some clarity on this chapter of my journey.

Yesterday I received my third and last dose of drug #1, Idarubicin - a strong concoction that is a 15 minute infusion once a day for 3 days. I am on my fourth day of drug #2, Cytarabine or Ara-C. That one is a 24 hour infusion for 7 days. Then I'm done with chemo. My blood counts have started to drop, and they will all bottom out 10-12 days after the start of chemotherapy. Then I will start to rebuild bone marrow without leukemia cells. I don't feel too terrible. I felt a lot worse when I first got here. I'm not too nauseous, and when I feel queasy, there are drugs to make me comfortable.

Several people have asked me how they can donate their blood specifically for me. It looks like next week I will need some transfusions, but my doctor says it's safer for me to use donations from the general blood bank rather than have directed donations from people I know. He'd rather not be limited to directed donations, and there are potential complications from receiving blood from family members when I have no blood counts. But he and I would love for you to donate to the blood bank in your local community to replenish the resources that I may use. The Community Blood Services is a great place to donate.

A few people have commented that I must be really angry with God. I understand that response, but it doesn't make sense to me. God didn't give me cancer. We created cancer. It didn't always exist, back when the Earth was clean and we lived healthy lives and ate healthy foods. I am angry, but I'm angry at cancer, not God. God provides me with an anchor with which to hang on, as I navigate these stormy waters. And there are moments when I think that I can actually feel your prayers. It's a comfort that's hard to describe. It gives me strength for the days ahead.

Kathy

CANcer + HEALth = CAN HEAL

Nothing Like a Good Party Before a Storm

To celebrate my Touchdown, I decided to have a Negative PET Scan Party. It's a little odd, but way better than a birthday or holiday in my book. I found some cool lung people for the invitation:

I invited friends and family far and wide, ordered up some party trays, made a batch of knock-your-socks-off sangria, and arranged a wall of PET/CT reports, along with diagrams Dr. Georgiades made showing the progress of my ablated tumors. My kitten, Sadie, even came out to investigate the festivities. My friend Eliza came from Chicago, and my cousin Art came from Seattle. A good time was had by all. That was on Friday, October 16th.

Late Sunday night, after taking Art and Eliza to the airport, I became very sick with flu like symptoms. I was becoming dehydrated and was unable to take in fluids. At 2 a.m. I packed a small bag and drove 45 minutes to the ER. The hospital where my Captain, Dr. Francis Forte (see November 16, 2008 post) practices, is out of range for ambulances in my town.

I knew something was wrong a few days prior to the party because my blood counts came back wacky at a routine visit with Dr. Forte. I have been in Englewood Hospital and Medical Center since Monday, when I was told that I have leukemia, which is cancer of the bone marrow. After lots of tests, procedures, more tests, and a couple of biopsies, the final diagnosis is Acute Myeloid Leukemia or AML.

As I sit here, in the hospital room where I will spend at least the next 40 days or so, I am getting my first day's dose of chemotherapy. I will get one very strong drug for 3 days, along with another drug which will last for 7 days. This is called the Induction phase, where the chemo is crashing my bone marrow. Then, with no immune system whatsoever, I will recover for the next 7 days. Hopefully, my counts will have started to rise by then (if not, I'll wait a few more days till they do) and I will have a second bone marrow biopsy. If there are leukemia cells in my bone marrow, I will have to get more chemo. If there are no leukemia cells, I will be in "complete" remission. That's the new goalpost in this never ending football game: Complete Remission.

It's likely that I'll need several "blood products" (more cancer speak), such as transfusions. The Community Blood Services organization in Paramus is a possible place to donate specifically for me. But Dr. Forte would need to give them specific instructions as to exactly what I need, so we're not quite there yet. That would happen during the second week, when I'm building back my blood counts.

So how am I coping with all this? Well, this has been very tough. It's my 3rd cancer diagnosis - the first was 9 years ago when I was diagnosed with Adenoid Cystic Carcinoma of the Breast (ACCB), and the second was almost 3 years ago exactly when I found out that the ACCB had metastasized to my lungs. This one is the scariest. There's no solid mass to attack. Bone marrow is all over. But I beat it twice before when the odds were against me. I can do this. It's my thing - fighting cancer. I'd like to find a new thing, but that's not going to happen for awhile. So I'm ready for battle. Today I had my first solid food since Sunday, and let's just say that I've already called for a consult with the hospital's dietician. My diet of no red meat, no dairy, no white flour, no sugar and no inflammatory foods just went out the window. I can't have any fresh fruits or vegetables, and I can't receive any flowers because I'm so susceptible to infection. At least they have soy milk.

I haven't cried much. I suppose I will at some point. What makes me tear up is the outpouring of love and support from all my friends, family and co-workers. All the offers to help overwhelm me, especially since I live alone and my family is out of state. Yes, I'm angry, and I'm tired. And I miss my kitty. But really, I'm just grateful that I'm in the hands of my Captain and that I have such a loving circle around me. I believe that God has a plan for me - for us all. This is just one more "hmmm, I can't wait to see what this was all about" reflection. One day at a time. I still believe that Life is Good.

Pura Vida!

Kathy

CANcer + HEALth = CAN HEAL

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?

Kathy

CANcer + HEALth = CAN HEAL