The Suitcase

I consider myself a student of Life. I’ve read many of the spiritual writings of the day: Marianne Williamson on The Course in Miracles, The Secret, Echart Tolle’s The Power of Now, and Conversations With God, Books 1, 2, 3 and then some. I know about the Law of Attraction. I know that Thoughts are Things. I know what I should be doing: focus on the gifts of Now; choose love over fear, breathe, look for the beauty (and I would add humor) in each of life’s experiences, etc. You would think that I would know better than to jump to the “Oh my God, I’m relapsing”conclusion when every little physical discomfort pops up. Easier said than done.

My hospital suitcase, always packed and ready for a crisis, was a blue duffel bag on wheels that, over time, began to fall apart. The handle was busted and the fabric was wearing out on the bottom. I vowed that when I was well enough to return to work, I would throw it away, ridding my world of the sick leukemia energy buried within. When I returned to work, I was so busy, I forgot about the suitcase.
I was tidying up one night last week, preparing for my cleaning lady to come the next day (why do we do that anyway?). I open a closet and there it was – the suitcase. Ugh, that! I pulled it out and put it by the door to throw away the next morning.

I went to bed feeling uneasy. I had had a surgical biopsy the week before – just ruling out yet another possibility for yet another type of cancer. The procedure had gone fine, but I was bleeding more during the second week than I had during the first. "This doesn't make sense," I thought." I woke up around midnight feeling nauseous and awful. “Don’t panic,” I told myself. "Just because I have two of the four terrible signs of impending relapse (bleeding, GI trouble, bone pain and fever), there’s no reason assume the worst." So I laid in bed, trying not to think bad thoughts. Sure, that works. “I can’t go through that again. I’m leaving in a week to move Dad into assisted living in Arizona. I’m in the middle of too many projects at work. I just bought all this great summer fruit and a tons of berries, which I won't get to eat. Damn!” And so on. I decided to wait till morning and go straight to Dr. Forte's office. By this time, I was convinced I was relapsing. There was no other explanation.

I dosed for a couple of hours. Sadie tried to console me with her purring. I woke up at 6:00 feeling even worse; I showered, dressed and started toward the closet for a suitcase. And then I saw it: the evil hospital suitcase, propped against the front door, ready to be tossed. I froze. I must have stared at that blue suitcase for a full minute, my heart racing. It felt like a battle of wills. Eventually Sadie broke the spell, pleading to be fed. I took the suitcase outside and pitched it in the dumpster, a little too loudly. I had won.

I packed a different suitcase, drove to Englewood, had my blood drawn, and waited. As soon as the coast was clear, I stole my blood results from the stand outside my exam room and exhaled. My counts were better than last month. All was fine. Dr. Forte came in and said that, even under the microscope, no rogue cells were found. “Sometimes a cell or two will fall off the assembly line and the spleen hasn’t come around yet to pick them up. But you had none of those, not one. It’s probably just stress. You should take it easy.” Note to self: relax – I’ll put that on my To Do list for after Dad’s move to assisted living. I drove to my surgeon’s office, and asked about the bleeding. He said, “That happens sometimes. Everything looks fine.” (It would have been nice to have a heads up on that. By the way, the pathology report for that surgical biopsy was negative for cancer.) I drove back home, took a nap, unpacked the “benign” suitcase, and started to feel better.

What was the lesson in all this? Well, there were many. I was reminded of the value of faith, the ease with which fear overtakes logic, and power of symbols. The blue hospital suitcase was a test. Such tests merely measure what we have learned. I’m tempted to be hard on myself for momentarily forgetting all my spiritual readings. But that would defeat the purpose, now wouldn’t it? Life is a classroom. I just had a hard day at school.

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

"Have a little faith, there’s magic in the night…"

That one line from Bruce’s Thunder Road says it all. I heard late last week that I am still in a complete molecular remission – no inversion 16 markers for leukemia 2 months in a row following the end of treatment! Not only that, but my blood counts seemed to have recovered too! It would have been awful if I achieved a complete remission only to learn that I had permanently damaged my immune system. So yes, there is magic in the night. And yes, faith deserves a lot of the credit. But so does the power of prayer, a great team of doctors, a big dose of luck, and all of you who have stood by my side.

There’s no way to do a Google search and find research that will tell me how to allocate credit for my good fortune – how much weight to give faith, prayer, medical expertise, luck, an incredible network of loved ones, determination. All I know is that I was fortunate to have all these on my side. I dodged another bullet. No, a cannonball!

Today was my first day back to work in 7 1/2 months. It feels great to return to my pre-leukemia life, and I'm so grateful that I can pick up where I left off. The people at my firm have been amazing to me. Among the many, many things on my list of blessings, they are at the top.

Like Bruce, I believe in faith. I believe in magic. I believe in Better Days:

Every fool’s got a reason for feelin’ sorry
for himself
And turning his heart to stone
Tonight this fool’s halfway to heaven
and just a mile outta hell
And I feel like I’m comin’ home…

These are better days
These are better days it’s true
These are better days
Better days are shining through

Kathy

CANcer + HEALth = CAN HEAL

A Little Ditty on Death

Nothing clears a room faster than the topic of death. But when you've flirted with it as much as I have, you can't help but formulate a few thoughts. I revise the playlist for my memorial service every time someone tells me, in some form or another, that I'm going to die. Then something happens that reverses that prediction and I stop my preparations for what promises to be a kickass service.

Now that my future is looking bright again, I think about what I've learned in this last fight. For one thing, I'm more comfortable with death. Or maybe I'm becoming desensitized after so many false starts. I now notice ways in which our society promotes crazy notions that assume we can avoid this inevitability. The truth is, we begin the process of dying the moment we are born.

Many countries face death and the process of dying as just another part of the Circle of Life. But modern society has demonized this inevitable step, maybe because we've scrambled the notion of death as a fact of life with the ways in which many people die. We have created horrible, tragic ways of taking (and wasting) life that didn't exist generations ago -- drug related deaths, senseless shootings, natural disasters brought on by global warming, not to mention higher disease related deaths caused by crappy diets and the lack of exercise. So we invent ways to cheat death instead of addressing the causes of so many fatal problems. Then we lay the blame at death's door, instead of seeing the irony of such flawed logic.

The task then becomes making sense of senselessness. I've learned that this is the fastest way to make yourself crazy. There is no making sense of something like cancer, because, by definition, it's senseless. We created the beast. So believe me, I'm no stranger to the possibility of a senseless reason for dying. But that's not death's fault.

For me, the challenge is to find a balance between being prepared for whatever may happen and having faith that I'll live longer than any actuary table would predict for someone with my medical history. It's tough. Having two unrelated cancers means I have to muster up twice as much strength to combat the temptation to occasionally visit what I call the Dark Side. You know what I mean -- that knot in your stomach when you think about your own mortality.

I've developed a few ways to beat back the Dark Side. One is to remind myself that death is not the worst thing that can happen. Not making a positive impact in some way, to me, would be an outcome far worse than death.

When I venture close to the Dark Side, I think of two people in particular, not because of the way they died, but because of the way they lived. One is my friend Phyllis Cardinale. Phyllis was a member of my first cancer support group, and was the main reason I kept going back. I only knew Phyllis for about a year, but she left quite an impression. She had a great sense of humor and faced her death with grace, dignity and wisdom that I never forgot. She was responsible for leading me to Dr. Forte and to my close friend, Elissa. (Phyllis also worked as a paralegal in my law firm in the late 70s.) Phyllis was a fighter, undergoing 6+ years of treatment for breast cancer, including a stem cell transplant. She named her wigs, according to her moods, and wore them as sassy accessories. Elissa took her shopping, in her wheelchair with her oxygen, just a few days before she died. She wasn't the type to sit around -- not if she could squeeze a little more life out of each day. Phyllis reflected on her approaching death with curiosity, hoping she might be able to somehow know that her family would be okay after she was gone.

The other person I call on for guidance is my maternal grandmother, Natica Seger, aka Grandma Tootsie. Toots was a tough Swede, a staunch Democrat, and a role model for balancing her independence with complete devotion to her husband, Victor. Saying goodbye to Tootsie when she was dying of ovarian cancer was one of the most profound moments of my life. She was sweet, wise beyond words and at peace. Her sadness at having to say goodbye to people was tempered by anticipation for meeting up with my grandfather and her parents. In her last days, her fiesty spirit surfaced when she would wake up sputtering, "Oh, sleep is such a waste of time. Let me tell you some more stories while I still can." Whenever something happens to bring the Dark Side closer, I think to myself, "What would Phyllis do?" Or, "What would Tootsie say?" That, to me, is leaving an impact.

Another way I fight the Dark Side is to focus on the advantages to having a heads up on the way I might die. Knowing what's coming, I'd be able to figure certain things out, depending on the circumstances. I kind of like the idea of having a pre-death memorial service. I envision such a great party, I would hate to miss it. I wouldn't have all those growing old fears that hover closer as we age. I'd control as much as possible, which is important to control freaks like me. I'd make sure to express my love to all who have given so much to me, which I try to do now. I would also make it known that if anyone says that I "lost my battle with cancer," I will lovingly smack them from whatever dimension in which I happen to be residing. (See my August 30, 2009 post, "Does Anyone Really Lose Their Battle With Cancer?) Perhaps the biggest lesson I've learned is to control what I can and let go of the rest. Letting go leads to peace and peace leads to happiness.

I had been putting off writing my thoughts on this subject, but was inspired by my friends Michael and Georgette McHale, who offer the world their loving insight, strength and humor. Thanks to both of you for choosing love over fear.

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