Don't Take Sh*t for Granted

I love books by Anne Rice, the New Orleans author most well-known for "Interview With a Vampire." One of my favorite books of hers is "The Tale of the Body Thief," when the vampire Lestat is tricked into trading his preternatural body with a mortal, who then decides not to trade bodies back.

In the first hours after Lestat becomes mortal, he is seized by a sensation that he doesn't understand. He suddenly feels a pain in his abdomen, something he hasn't felt in hundreds of years of vampiric living.

He finally realizes what the pressure is that he is feeling: he has to poop.

He makes it to the toilet in time, and feels the relief of voiding his body of the nutrients it didn't need.

What a bizarre little element of life for Anne to write about, how we as living beings eat and poop. It's part of living that truly, most of us take for granted. That is, until we can't. And then it becomes the central focus of our lives.

My dad has been battling colon cancer since he was first diagnosed with it in 2007. During a routine colonoscopy when he was 62, they found a significant sized tumor that required colon resection. He was declared cancer free and did not need chemotherapy or radiation.

The cancer recurred along the suture line in 2011. Doctors told him that this kind of recurrence rarely ever happens. He had radiation, chemotherapy, and another colon resection which left him with a very short colon.

Life since 2011 has not been pleasant for my dad. His shortened colon means that when he first feels like he may need to go, his colon is already full and has often has voided without his controlling it.  He gets up in the middle of the night several times to deal with this problem, not just a quick tinkle like many of us do. It means that indulging in particularly fatty or rich foods makes it impossible for him to leave the house for 24 hours or more.

He used to love to take road trips, and would often drive north to Minnesota and east to Michigan from there to visit family. He hasn't been able to make many of those trips, and when he does, they take infinitely longer due to the number of stops along the way.

His quality of life hasn't been the same since 2011. Then, this summer he was told that the cancer has recurred once again.

Chemotherapy was ordered -- no more radiation as he has had a lifetime worth of radiation already. The hope was to shrink the tumor and then do a colostomy, which would remove his colon altogether and he would void into a bag instead.

This was real hope for him.

He would finally have control of his body. More importantly, it would no longer control him. He had to go to Little Rock, about 3 hours from his home, for the surgery, because the surgery would be tricky due to the amount of scar tissue in the area from his prior surgeries.

He had surgery on January 15th. We are hoping that he will be discharged from the hospital tomorrow, February 9th, nearly a month after his surgery. This was much longer than the 5-7 days of post-surgical care that the doctors told him he should expect.

A few days after surgery he had a bowel obstruction, resulting in him throwing up even the smallest amounts of water that he could drink. They finally got the obstruction to flush out, after nearly 48 hours of the most incredible pain he says he has ever experienced. (Up to that point, that is.)

He developed an abscess. He had crazy amounts of discharge coming from the surgical site and other unnamed orifices, so much so that he became severely dehydrated.

Once the abscess resolved, they discovered he had a fistula, which is when two organs that aren't supposed to be connected together get connected. Part of his intestines had healed incorrectly.

The only way to treat this fistula is for him to stop using his gastrointestinal system, so that it can heal itself. That means no food by mouth. For weeks. He is getting nutrients intravenously and will do so for several weeks more after he leaves the hospital.

He'll be going home with an IV for nutrients, bags for the still unhealed stoma, and strict instructions to not eat or drink anything until he gets the doctor's okay. Once the fistula heals, he will finally -- finally! -- be able to eat and drink, though cautiously.

I believe those instructions are my dad's version of hell, the man who enjoys the gustatory pleasure of eating.

I will be flying down to Arkansas this coming weekend to visit. My sister and I had planned this trip together, thinking that he would have been home healing for several weeks by this time. Instead, Kristi flew down on a one-way ticket nearly two weeks ago to help with his care, and will be accompanying him back to his house from the hospital and ensuring that they have everything set up for his continued care.

He is surrounded by the most loving, amazing, supportive family members in my stepfamily and sister. He has friends and other relatives who call and write, wishing him a speedy recovery and good health.

All of the love and prayers help.

What would also help is for every person reading this to be screened, to get a colonoscopy so that others do not have to go through this.

Don't take shit for granted.

A Boy Named Zach

On Monday Zach Sobiech, an 18-year-old boy from Stillwater, passed away after a long battle with osteosarcoma, or cancer of the bone.

Zach was a remarkable teenager who we all got to know through Children's Cancer Research Fund. CCRF had heard about Zach's story and diagnosis of terminal cancer and asked him to be a featured in the KS95 for Kids radiothon this past December. Turns out Zach has a talent for song writing, and he was saying good-bye to his family and friends through song. His song "Clouds" was played on the air as a part of the radiothon.

He signed a contract with BMI. He recorded more songs in a real recording studio with talented aritsts and producers surrounding him. He headlined at a concert at the Varsity Theatre in Minneapolis, with all funds going to the Zach Sobiech Osteosarcoma Fund. Doors opened for him -- quickly, because everyone around him could see that time was running out for Zach.


And finally, the predicted happened. On May 20th, Zach died at home, surrounded by his siblings, parents and long-time girlfriend.

Zach's sister has written since her brother's passing about how his family struggled to find meaning in his death. She finally acquiesced to let God have him, hoping that Zach's passing would have meaning.


Zach's song "Clouds" hit Number 1 on iTunes two days after his death. Each purchase raises money for the Osteosarcoma Fund, which at last count has $250,000 in it, all thanks to Zach. According to one of the researchers at the University of Minnesota, the money raised is enough to begin genetic mapping to determine the root cause of osteosarcoma and find new ways to treat it.

I don't think Zach's sister has to wonder if his passing has meaning. The money he's raised and the research they'll accomplish will have meaning for thousands of cancer patients yet to be diagnosed.

It wasn't until after he had passed that the reality of his situation and its similarity with one of a boy I knew 21 years ago hit me.

Minus the media attention, the signing contract, the rock star status, the hundreds of thousands of dollars in charitible gifts.

I don't mean to take anything away from Zach, but it doesn't seem fair. There are thousands of children across the United States struggling with cancer, and many of them will lose their lives. Only a few get to make a difference the way Zach did.

Two decades later, I wonder who outside of Paul's immediate family and friends remember him, or if his life and death mean anything to anyone other than those he left behind.

And then I remember that he had participated in a clinical trial at the University of Wisconsin. He participated in a new chemotherapy protocol that at the time held promise for his kind of cancer. Unfortunately it was not successful in stopping his cancer, but at least researchers had the data to add to their learnings. I wish I knew what happened to that research, if it eventually resulted in new treatments or was abandoned as unsuccessful.

When the cancer returned after that chemo treatment, the University offered to try a radical new treatment. It had only been done a handful of times before with mixed results. (At least they were honest in their assessment).  It was called a bone marrow transplant. BMT's are done today with great regularlity and success. There are people living today who have had TWO bone marrow transplants and have lived to tell the tale. But when it was offered to Paul, it was in clinical trials and only a couple of people had survived the procedure.

His choices were: 1) undergo a painful and difficult procedure which had a 50% chance of killing him or 2) enjoy life, treasure every second of it knowing it will be over before any of us want it to be.

He chose option number 2. And I'll be honest, I'm glad he did. We had a wonderful summer together in 1992, taking trips to Great America, driving out to the lake and walking out to the lighthouse, going on bike rides through the countryside. He took a vacation to Mexico with his family, the only time he'd been to that country.  I foolishly returned to school in the fall and four weeks later, on September 29th, 1992, Paul died on a hospital bed in the middle of his living room, surrounded by his siblings and parents, but not his girlfriend. I wasn't there, and I regretted that decision to return to school for years.

My memories of him live on in journals, a scrapbook, a box of letters. I think of him at least once a day, usually with a smile and a nod to the stars.

Zach's passing has brought Paul's back to me like it was yesterday. I know the pain of the days to come that face his family, and I wish them peace and healing in the days and years ahead. They will be able to look back on his life and last days with gratitude for those experiences, and I hope they can smile.

What No Doctor Can Diagnose

Image from Michelle's Heart Songs

The father of a friend of mine was recently diagnosed with an inoperable brain tumor. The doctors went so far as to give him just a few months to live, something that you don't hear doctors say often.

Why don't doctors say that anymore? Because every once in a while, someone proves them wrong.

Doctors can diagnose all kinds of physical maladies -- tumors, disorders, diseases, malfunctioning organs that require dialysis or blood transfusions. What they cannot measure or see is the strength of the human spirit and a person's will to live.

I have known people who were diagnosed with stage IV breast cancer and are still living -- cancer free -- 20 years later.

I also know someone who was given an 80% survival rate but managed to be in the 20% who didn't survive his particular form of cancer.

My aunt was diagnosed with lung cancer, which moved to her brain, to her kidneys...and seven years after her initial diagnosis she finally succumbed to the disease. I believe that anyone else would not have survived the first treatment, much less battled on for seven more years. She lived to meet two of her grandbabies before leaving this world, something she would have missed had she not possessed such an indomitable spirit.

I am thinking of my friend and his family, and hoping that the doctors are wrong, because they cannot measure this man's will to live, or the strength of his family which surrounds him.

Inspired to Run My Best

This past weekend our family participated in Children Cancer Research Fund's 10th annual Time to Fly. This is a run/walk event with something for everyone: a 10k run, a 5k run, a 5k walk and a 1k kid's fun run. Lindsey decided she wanted to sleep in Saturday after her tiring week at Camp Kici Yapi, so Marissa, Wayne and I went to Harriet Island in St. Paul while Lindsey stayed home with a babysitter.

The temperature was already 88 degrees when Wayne's 10k began at 7:30 am, and it only got hotter from there. By the time my 5k run began at 8:30 it was 91 degrees with 66% humidity. Whew.

Yet despite the heat, I ran my fastest 5k ever. Why, you ask? Because every time I thought of stopping I saw these little signs that were along the entire route.

In honor of children fighting for their lives, or in memory of those who had already lost their battles. Just before the 1-mile mark I spotted the sign that our family had sponsored, honoring Annika, our Duluth friend, who recently fought back leukemia for the second time in her 6 years here on earth.

Every time I got winded or felt my knee tighten up, I looked at those signs and thought about the hardships those children had faced or were facing. The needle pricks, blood draws, chemotherapy, exhaustion, nausea, radiation. They have faced more challenges than most people ever will their entire lives. A little 5k was nothing compared to what they had gone through.

So I completed the 5k in 34 minutes and 16 seconds, only stopping to walk once at the water stop. Wayne and Marissa missed seeing me finish because they didn't expect me for at least 5 more minutes.

I also learned that I can see well enough to run even with tears brimming in my eyes.

It's Called "Health" Insurance, Right?

As those of you who follow my blog probably know, my dad has had two battles with colon cancer, the first in 2007 and the most recent in 2011.

He is a wonderful soul, a great story-teller and an easy-going, great guy who has been through hell. From diagnosis in January 2011 to a final surgery in October, he spent most of last year battling this disease. He is now cancer-free but is taking a low-dose maintenance chemo pill right now, since this particular type of cancer has recurred once already for him.

My dad and I, April 2012.

I have had friends and family members who have had cancer of the lung, breast, bone marrow and blood, ovary, thyroid, skin, cervix and others. You name the body part, there's a cancer that can grow on it. I do not mean to minimize the hell that all cancer is, but I cannot imagine a cancer more difficult to treat and manage than colon cancer because of the loss of dignity that goes along with it. I won't get more detailed than that, except to say that if you want to know more about the challenges that go along with colon cancer, you should check out my dad's blog on the subject. He is incredibly open and detailed in sharing his experience in order to help others who may be going through it themselves. There's a lot about this particular recovery that doctors don't tell you about.

Thus I am motivated to get screened for colon cancer, even though I'm not yet at the recommended age of 50. My doctor recommended it based on my dad's history and wrote a pre-approval request to Blue Cross Blue Shield, my insurance company, that I get screened.

It was denied because I'm not yet 50, despite my family history.

Hmmm...that's odd, this same insurance company covered the same procedure for my husband when he was under 50, based on his sister's early diagnosis of colon cancer. Hers was found during a routine colonoscopy and did not need any additional treatment beyond the removal of the polyp during the screening. The biopsy of the polyp indicated that it had been cancerous, and her doctor told her she was lucky that she had gotten a colonoscopy when she did, because her doctor misread her chart and thought that she had already reached her 50th birthday. If he'd realized she was still a few years shy, he wouldn't have recommended the procedure.

They covered my husband's screening but denied mine. Odd. So I called. Twice.

The first time the "customer advocate" informed me that it was her understanding that this health screening was covered when there was a family history, and that the pre-approval had been declined because of the manner in which my healthcare provider submitted the paperwork. (Apparently there's a difference between a "routine" and a "medical" colonscopy.) She said she would call my doctor's office, have them re-submit the paperwork and that I should get approved. Great.

Two weeks later I still hadn't heard anything, so I called BCBS again to confirm that it was now approved, only to find that it has been officially and formally declined.

That's because my insurance policy does NOT cover screening colonoscopies under age 50, regardless of family history. Basically, the only way BCBS would cover a colonoscopy is if my doctor indicated that I had some symptoms that would require one; in other words, if my doctor committed fraud. Not that BCBS recommended she do that, but simply said that colonoscopies are only covered if symptoms are present. I have no symptoms, and from what I understand of the disease, by the time symptoms appear it often means cancer is present. That's why people get screened.

While I wasn't looking forward to the procedure, I was looking forward to the peace of mind of having a clean bill of health, and I'm frustrated and annoyed by this decision. We recently drained our health savings account due to appointments for other family members so we have no money set aside for this procedure, which we discovered costs around $2,500.

Our family is fortunate in that we have health insurance and we have the ability to save money on a monthly basis to cover our health expenses not covered by our high-deductible plan. Eventually I'll be able to get screened, and we'll pay for it out of our own pocket. But for low-income familes or anyone without health insurance, I have to believe that this is a screening that they would simply not get if insurance didn't pay for it.

Obviously BCBS understands that they are gambling that the majority of colonscopies performed on people under age 50, regardless of family history of colon cancer, will be negative. But if they are wrong, it doesn't seem fair that their customers get to pay the price with their health.

The silver lining to chemotherapy

It exists and is proven to fight cancer.

My dad was diagnosed with colon cancer 4 years ago. He went through a bowel re-section surgery and has had a long and difficult recovery. Thankfully the doctors had determined that the cancer had not spread and did not recommend chemotherapy or radiation treatment at the time. The whole family was relieved that he did not need to go through further treatment.

Fast forward four years.

A colonoscopy determined that the cancer has returned. It was caught early and thankfully, once again, is localized to a single site. But this time, they are recommending chemotherapy and radiation, followed by another surgery to remove the tumor. They hope that the treatment will stop the cancer from recurring.

My dad couldn't be more relieved. He is so glad there are treatment options. He and his wife were reassured in speaking to the surgeon about the road ahead; people have been down this road before, and the doctors know what to do based on those patient's outcomes.

So while I at first was dismayed at his having to go through chemo and radiation, he was happy to have that option, to keep the cancer at bay. So yes, there is a silver lining to chemotherapy.

Four years ago he kept a log of his health and the long road to recovery. He's found through the years that it's helped other people who have had similar surgery, and he's continued to get comments and emails from people who find his blog, looking for information on recovering from a bowel re-section. I like to think it's an early draft of a book titled "What Doctors Don't Tell You About Your Pooper." If you can tolerate reading all the details of the rumblings and workings of a GI system, follow his blog at http://bowelresectionhomerecover.blogspot.com/

I believe his blog will have a happy ending. But positive thoughts and prayers never hurt.

Birthday etiquette for those without birthdays

Yesterday was my Aunt Ann's birthday. She would have turned 50, except she passed away two weeks ago after battling cancer for years.

I wouldn't have remembered her birthday except that I got a reminder on Facebook saying that it was coming up. Her Facebook page is still active and her family is filling it with memories of Ann. A couple of weeks ago they used it as a forum to inform people of her wake and funeral.

I wrote something on her wall to let her family know that I was thinking of her on this day. And then I scrolled through the rest of the messages.

There were others who acknowledged that they, like me, were remembering her memory:

"You would've been 50 today. I am missing my friend."

"Best wishes to you in your new home in heaven, Ann, on what would have been your birthday."

And then there were these posts:

"Happy birthday, Ann! I hope you have a great day!"

"Wow - 50! Congratulations on a milestone!"

Did they really not know? How insensitive is this to the family, who is clearly maintaining her page to keep her memory alive just for a bit longer? How awful to wish a happy birthday to a person who no longer has one.

Certainly, social media has changed the way we interact with each other. For some it has expanded our circle of friends, deepened our relationships and introduced us to people we never would have met. For others, it has allowed us to hide behind computer screens, to avoid meeting with people face-to-face and keep us isolated.

But would a situation like this have ever happened before? Perhaps the family would have gotten one or two birthday cards for her from people who truly hadn't known. But Facebook makes it so easy to give casual wishes; her wall was deluged. And how sincere can they really be - they didn't know she had died.

It's a new twist to the hardship families need to go through when loved ones pass on: pay the medical bills, get the catalogs and  mail stopped, and inform the virtual world.

A Bittersweet Memory

Facebook is reminding me today that it is my Aunt Ann's birthday. She passed away two weeks ago after a years-long battle with cancer. She would have been 50.

I am thinking of her immediate family, for whom this is the first of many firsts of life without Ann. First year she isn't here for her own birthday, her husband's, her children's and grandchildrens. The first 4th of July without her there, the first Christmas.

The first year of life after a loss is the most difficult. Every experience, every holiday brings thoughts of "I wish she were here." It gets a little easier after that, but not by much, until one day you find yourself saying, "How many years has it been? Let me see, she was first diagnosed in spring of...hmm, I guess it's been a long time."

But that is bittersweet, too. Because after a person first leaves you, you don't ever want their memory to fade. You swear you will never forget her face, the tone of her voice, the way she smelled. Yet with time you do forget, and for a while you feel guilty for having forgotten, as if you were somehow disloyal to their being here at all.

It takes some time to finally realize that that is what is meant to happen, that the person would want you to move on, to make new memories and create happiness with those who are still in your life.

If only it took something less than time.

A Love Story to the End

She was just a teen when they met.

Loud, obnoxious, rude. You could hear the two of them coming from miles away -- the loud rumble of the car, shouts as the car doors slammed, and then two bodies leaping off the edge of a dock into the waters of Dana Lake, coming up shouting with cold.

That is what I remember of their courtship from my grade school perspective. They were crazy together.

They fell in love.

They got married.

People said it wouldn't last.

"They are too young."

"They don't know what they're doing."

"What will they do for money?"

But they said, "'Til death do us part" and sealed it with a lucious kiss, just to show everyone that they could.

They had a baby boy and they named him Thomas James the IV. They had a baby boy again, and named him Joseph. And then a little girl, Valerie.

They were crazy together. Playful, loud, silly and strong. You could hear the family coming from a mile away -- the loud engine of a car being driven too fast over gravel roads, car doors being slammed and shouts of bravery.

"I can jump farther than you can!" and three spindly little bodies hurled themselves off the dock into the waters of Dana Lake. The parents, now grown, stood on the shore and smiled.

The kids grew up and grew wings. They moved away to Florida, to California, to school and jobs and girlfriends and boyfriends.

The kids had kids -- a baby girl and a baby boy, sweet, towheaded grandbabies.

And the kids flew home on their wings to visit, to go boating on the lake and make memories together, their clan. They visited Dana Lake, where two little toddlers played in the sand by the shore, too little to jump off the dock...yet.

Way back in the beginning, they said "til death do us part."

And that is how it ended.

Today my Aunt Ann lost her 7-year battle with cancer. I could re-count every diagnosis, every treatment and outcome, but all that is worth knowing is that she was a courageous, stubborn woman who met every challenge with a strength of will that most of us can only admire. Her will to live was amazing. She thrived long beyond when others would have given in to her disease.

I pray for her husband, for her kids and her grandkids who will miss her strength and energy.

A light in the world has gone out.