The land of NED - two different journeys

Kate Jackson of the Pointy Universe gives her take on Breast Cancer Awareness month for the Patriot Ledger.

One story I'd like to give Kate is one personal to me. There is one woman on my team at work that was diagnosed with BC in 2004-2005. She is in her late 50s and she went through the same thing. She didn't return to work for two years while she received treatments for breast cancer, but when she did return, it was certainly triumphant. I don't know the staging or extent - none of my business - but she was thrilled to return.

Compared to my father, who died from non-smoking related metastatic lung cancer in 2005, her return gave me hope. Cancer is a devastating diagnosis, but not the end of the world. If detected early enough, the land of NED is reachable (not exactly easy - you have to go through the gauntlet of chemo and radiation first - and that cancer is like the bad guy in The Warriors clinking his bottles and taunting them - "Warriors...come out and play-ay!").

My dad's cancer was detected because he had a nagging leg pain and the bone in his thigh snapped (femur). The day they did a nuclear bone scan did they discover the 3cm tumor in his lung that had metastized to his leg. Instant Stage IV - probably the toughest diagnosis one could get. Not an immediate death sentence, either, as we had him go through six regimens of chemo (Taxol and Cisplatin) and later on, radiation for his brain cancer to follow.

We too thought that a miracle would occur. We had a bottle of inexpensive champagne ready when the doctors would announce he was in that land of NED. Several times, I hoped for a miracle - that not only the tumor in his lung would be eradicated, he'd make a total recovery.

The land of NED, however, had a cruel deviation. When he died on November 22, he was certainly out of the land of constant pain, heavy-duty opiates, and hallucinations, and into a dry martini handed out by St. Peter himself. (Groucho Marx joke spoken by Bugs Bunny.) The day of his funeral, we did indeed drink that champagne we saved as a celebration, not as a goodbye.

To this day, I certainly miss my father. But I never mourned him - maybe cried a little bit, but never sat there and bemoaned his loss. That's because he never would have wanted pity or sadness. He reminds us that nothing is forever, and to make the best of what we have. You have to continue with your lives, even if there are times of loneliness and despair.

We love to use the word "sustainable" as if it were a magic wand, but human lives are impossible to sustain much beyond one's life expectancy. Sure, there are outliers - Willard Scott's bread and butter was announcing centarian's birthdays - but sometimes there are things we can't control, and giving up that control is never easy.

To say that cancer is impossible to beat, however, lies in how willing we are to find its cure. Once it is, all those people, including those with lung cancer, will automatically shift into the land of NED.

For Kate Jackson (no waaahmbulance required)

Kate Jackson, late of the Pointy Universe, is going through a little bit of trouble in her next phase of cancer treatment.

Namely, the blues have come to the Pointy Universe. Those days where you finally chuck your clogs and yell out a nice, hearty, cleansing FUCK to the air and the people around you, and then collapse to the ground in sobs.

You sometimes don't know what to say to a cancer patient, even if they're a cancer survivor. My father didn't survive, yet he managed to live every single moment until his final days. He never said, "give up your time to take care of me. I'm terminal, so feel sorry for me." He joked and looked at his coming passing as a gift, a relief, a normal process in life. Even though it had to come at 63 years of age, he went through it like a trouper.

The great thing to experience is talking to a long-term cancer survivor - or one who had stage I or II cancers (even stage III) and haven't had a problem for years. I know of one woman who is on my team at work who went through that hell of chemo and radiation and finally returned to work, albeit on a reduced 32 hours per week schedule. Another woman on another team came in with blonde hair one day and brunette hair the next. Still another wore a bandanna. And they come in with the energy of teenagers.

It's also OK to feel guilty, anxious, scared - biting your lip and having someone say, "I like your lip color" and then showing up at the ER for stitches. It's a normal process to shut the door and have "chemo blues" (replete with shaking sobs and tears running down your face) versus "chemo brain" (where you wear two different colors of knee highs AND shoes and somehow Glamour magazine puts the black bar of shame over your face, forever branding you a fashion Don't.)

When it's over and your hair has grown back to flowing hair, you'll look back and say, "Man, those blues were so yesterday" and redeem yourself as a fashion "do" with a killer dress and killer heels.

(Aside: Be kind to your hubby and your kids. They're rooting for you.)

Kate Jackson's battle with cancer, served up with a wink and a slice of sass

Kate M. Jackson was a graduate of the Boston Latin Academy class of 1988, and is currently undergoing chemotherapy for breast cancer at the Dana Farber Cancer Institute.

Her blog, Pointy Universe, is a great blog that takes us on her journey with with interest, humor, and ruefulness about what happens when cancer occurs and how people deal with the hair falling out, the 15 hour sleep sessions, and the nausea.

Kate, should you read my blog between the sessions of red death and radiation, I graduated two years later in 1990...I'm the tall red headed guy with glasses. The DFCI people are fantastic and will help you through this journey...they helped my dad through his treatments until his final days. Ad aspera ad astra, and your hair will grow back!

Dear Patrick Swayze...

I watched your interview with Barbara Walters on YouTube.

I am the son of a lung cancer patient who died in 2005. When he was diagnosed in 2004, the cancer was discovered as osteosarcoma hit his femur and the bone snapped. The next day, tests confirmed that osteosarcoma came from a mass in his lung. We all got to watch cancer transform him the same way it's transforming you - weight loss, chemo, etc. You still don't look too bad, but those last few weeks he was alive, he was down at least 25-30 pounds. Not once, though, did he want pity, sorrow, or anything else. He still cracked jokes and did what he could to keep his quality of life until he drew his last breath on November 22, 2005. When my father finally passed away, however, I didn't scream or cry. I felt so relieved and happy that he didn't have to suffer through the monster that was cancer anymore.

When I watched that interview, however, not a single time did I say, "Poor guy, he's doesn't have that much time left." I said, "Wow, Patrick Swayze could kick cancer's ass and do a scene from Dirty Dancing at the same time!" (Or at least give it a temporary kick in the naughty bits.)
Certainly, it's going to be sad to leave your wonderful wife of 33 years, Lisa Niemi. It's still sad for my mother, as those past memories will rush up like a wave and crash at the least expected time. What's left over is not the body, not the voice that you hear when you wake up in the morning, but the memories and the love. That's the most wonderful gift you can leave before and after you die.

The late Bill Bixby once said, "People with cancer just die, give up...you can't do that." That's precisely what you're doing - keeping everything up just to maintain your sanity. We all die - that's a fact. When is the variable that makes us nervous - some die moments after they come out, others last for a century or more. Only God (or your favorite deity) knows for sure. When that moment comes, it will not be a sad moment. It will be a joyous one.

I wish you the best of luck during these times, and keep on with that uptempo attitude of yours!

Cleary Squared

The difference between romance and love

In this NPR article, a very touching and outstanding story about two people who lived through a cancer diagnosis, until the person with the diagnosis passed away one week after their engagement at the age of 36.

I made the following comment to the person who posted this article on her Facebook page...

My father, when he was first diagnosed with lung cancer back in 2004, would have never known he had it if he didn't break his leg. It was a medium sized tumor, but the damage was done - by September 2005 it had spread to his spine, his brain, and everywhere else. But the greatest thing of it all - he never let anyone feel sorry for him. He still joked about things and kept as lucid as possible until his last days, which were filled with hallucinations, focal seizures, and goodbyes. We even had an Irish wake for him the day before he died.

When you think about it, though, it's a true test of love and friendship to sustain and stick by those in their darkest hours. We may pay the price by losing our loved ones, but we won't count the cost of what we sacrificed to get there. But the memories remain, and that's the real gifts they leave behind.

The difference between love and romance is that we make ourselves attractive for romance, but for love, attractiveness doesn't matter. It's that willingness to show up and support your loved one when they need you the most. That endurance makes a giant difference.

The deadly assassin named cancer

Senator Edward "Ted" Kennedy was diagnosed with a malignant glioma in his front parietal lobe.

My father, after being diagnosed with lung cancer in September 2004, was further diagnosed with gliomas similar to Sen. Kennedy's in May of 2005. We thought he had food poisoning, because he vomited a lot, but under further diagnosis, the doctors at the (fantastic) Dana Farber Cancer Institute discovered the gliomas. My father, after undergoing six regimens of chemotherapy, told us it was a very tiny cell and it was nothing to worry about - the radiation he would be getting would take care of it.

I can tell you first hand that malignant gliomas, even though they may look small and harmless, are nothing to trifle with. Radiation, plus the gliomas, effectively scrambled my father's brains, and caused other complications such as hematomas, headaches, and loss of physical coordination. By September 2005, he was wheelchair bound, but still somewhat lucid, and actually looked like he was getting better. However, once the cancer spread to his spine, we knew it would be a matter of time. We planned his funeral in October, thinking he'd survive until at least after Christmas. He died two days before Thanksgiving, after celebrating his 35th wedding anniversary, at the age of 63.

The time span between my father's diagnosis and death was five months.

Seizures are also a potential calling card for gliomas. My father's were not the grand mal seizures, but what they call "partial focal" seizures, which I can best describe as daydreaming with difficulty rousing. Sen. Kennedy could have also had the traditional grand-mal, which are also known as "tonic-clonic."

JFK and RFK found their lives snuffed out through a killer's bullet. Cancer is no less an killer, but it does so at its own leisure, biding its time to wreak havoc through the body. Time will tell whether Sen. Kennedy will beat this medical assassin. Miracles may happen, but don't count on them.

Making crab cakes out of cancer

All I ask is that you watch the video of Randy Pausch, a computer science professor from Carnegie Mellon University in Pittsburgh, and once you're done, ask yourself how a man with terminal pancreatic cancer can still have the vim and vigor of a freshly-minted assistant professor. Never mind your political bent - see if you would face the end of your life either severely depressed or looking forward to it as if it were a long-term vacation.

Courtesy of Power Line.