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wefeheizen [userpic]

Still not dead

February 23rd, 2014 (06:02 pm)

I'm still alive, suckers.. 6 years, baby!

wefeheizen [userpic]

Still Here!

February 29th, 2012 (12:38 pm)

Today, I am alive and well and living in Chicago...

wefeheizen [userpic]

Evading the Prognosis

April 29th, 2008 (12:52 pm)

I've said this countless times in the past two months... The thing about malignant peritoneal mesothelioma is that it's so rare that there isn't enough data to make any sort of prognosis. Now I'm going to live a long time, since I'm now a Great-Uncle to one Jonas Zaske, but if you do any research into what I was diagnosed with, you will be surprised at its statistical deadliness. This fact is a big reason why I've stopped Googling and placed my faith in the cancer doctors.

After my surgery, Dr. McGill explained that my tumor/cancer was concentrated in one gigantic mass vs. speckling the inner walls of my abdomen. This was the best news, because the latter would mean more chemotherapy and radiation treatments. I got off easy! I gave birth to Herbert, and they only poisoned me once.

I have the prayers of family, friends, co-workers, and churches, to thank. Well, I'm off to buy stationary...

wefeheizen [userpic]

9 Days in a Backless Gown

April 16th, 2008 (07:58 am)

So, I roll into Northwestern Memorial Hospital early on Friday, April 4th. They take me in to pre-op very quickly, and I'm out of my street clothes in a matter of minutes. They're going to give me an epidural for post-operative pain relief. It sounds good, after all, they are about to cut into my abdomen and pull out an alien. The epidural takes some time to situate in my back. There's a lot of pushing and chatter from the 3 attending anesthesia docs. I get an IV line in my left arm... I say my farewells to my parents and Carole, and I'm out...

Look at the size of that thing! The surgeons called it a "cantaloupe-sized" tumor. We called it "Herbert," 7 pounds, 9 ounces (est.)(j/k)

I'm waking up in post-op. My eyes remain closed. The pain is overwhelming. The epidural didn't work, as expected in 20% of the population. I remember crying horribly, praying to God and Jesus to end my pain. It felt like impending explosive diarrhea... They pumped me full of dilaudid, which eventually calmed me down.

As I slowly get my bearings, I'm in the surgical ICU. A nurse is in my room constantly. I have three more IV lines in my arms and a triple-lumen in my neck. The scar on my stomach is funky. They cut around my belly button and above about 4 inches. I also have a subcutaneous shunt drilling down into my abdomen. It is through this shunt I will receive chemotherapy.

The doctors put me on a Patient-Controlled Analgesia (PCA) device, aka "the button" which delivers pain medication directly to my aorta at my whim, once every 15 minutes. I don't think I abused it, pressing the button only when needed, sometimes hours apart. I could feel the pain from the retractor they put at the bottom of my gut to spread me out.

After a night of intensive care, they move me to a regular old hospital room. By Sunday, the teams of doctors start visiting me. There is the superstar "surgery" team, composed of Bentrem, McGill, Agnew and Linn. These folks would come by twice a day for my entire stay.

My internist visits me every day as well. Dr. Terman is another superstar: great doctor, on the faculty of the medical school, father of a one year old. He hears some cloudiness in my chest and puts me on antibiotics for the duration of my stay.

Doctors from the endocrine team visit me everyday as well. Dr. Aleppo and oh-my-god, too many doctors visit to remember all their names!

Everyday I improve. I get put back on a clear liquid diet, and my first meal is crushed ice. It tastes like food sent from the gods, old Roman gods. They pump loads of fluids in me, about 3 liters a day. My Foley comes out, and I walk myself and my IV contraption to the bathroom to fill a jar. Catheters are no fun...

It's amazing the focus on pee and poo. Doctors listen to my belly for noise in my descending colon at an amazing 10 times per day. Restarting my GI tract is a critical step in my recovery process. They did cut my small intestine and colon and sewed them back together after all. My first #2 was... Well, I won't bore you with the details.

By the Wednesday following my surgery, I am well enough for chemotherapy. I'm transferred to the new Prentice Woman's Hospital at NMH. This is funny, because I'm not a woman from a biological perspective. Actually, the top two floors of Prentice are devoted to hemotology-oncology. This is where chemo happens. I am scared.

With so many good and personable doctors, you might wonder how the world evens things out. I find the flip side with my chemo docs. My stupid jokes don't work, my sarcasm fails to raise eyebrows, and they blaze through like an Oklahoma tornado. Maybe years and years of their patients (patience?) dying has caused them to distance themselves emotionally.

My chemotherapy is cisplatin (H6Cl2N2Pt), a platinum-based drug with a list of side effects that give school children nightmares. On Thursday, they pump 2 liters of the stuff directly into my abdomen. My belly bloats, but it isn't painful. It takes 5 hours to administer and by the end I am feeling fine.

It hits me about 3am Friday morning. Cold sweats and a metal taste in my mouth are both bad but
pale comparatively to the toxic farts from hell I am experiencing. The president of Iran calls me to see if I'm free to help with their biological weapons program. I tell him fine, as long as he admits that the holocaust did happed. I digress...

By Friday afternoon (one week in) I feel weak and poisoned. I can't eat, but Dr. Terman twists my arm, and I have some baked chicken and some rice and about 4 pounds of jello. My red blood cell count is dangerously low. They offer a blood transfusion. I decline. I feel slightly better on Saturday, and by this time I am just anxious to get the hell out of the hospital. No.

On Sunday, I decide it best to take the transfusion. The plan is to push two units and to let me go home. I sit and watch the Masters on the 40 inch plasma. I get my discharge instructions, three pages. I put on my street clothes and shoes for the first time in nine days. They wheel me down to the exit where Carole and the bunny-car are waiting to escort me home. The fresh air tastes so good.

wefeheizen [userpic]

Slice and Dice!

March 20th, 2008 (01:06 pm)


I'm sure what everyone needs on top of a 13cm x 12cm x 7cm tumor in their gut is a killer late-season influenza. Lucky for me, it's not the "barfing flu" but nonetheless, 5 days of running a fever will take a lot out of anyone. Now I have the sweats, which are oh so fun and charming.

Well, I have been processing a lot of medical data after seeing specialists, getting outstanding consultation and above the board customer service. (I mean, I don't know where Northwestern Memorial Hospital (NMH) fits in the spectrum of awesomeness, but my care has been incredible.) So I had these cancer treatment options to chose from:

  1. Operate, radical tumor resection, and they'll put shunts in my gut for a post-operative "hyperthermic intraperitoneal chemotherapy".

  2. Operate, radical tumor resection, with shunts, but while I'm in the OR, they'd give my the first "hyperthermic intraperitoneal chemotherapy" treatment with my gut open so that they can "massage my viscera" and get the medicine in every nook and cranny.

  3. Pre-operative systematic chemotherapy, followed by option 1.

  4. Pre-operative pinpointed radiation treatments, followed by option 1.

Option 2 would require me to travel to another hospital that has some experience with the procedure as outlined. Because of the rarity of my tumor type and location, one doctor in Washington D.C. has sort of cornered the market on this surgery, combined with what I'm calling "operative bowel groping".

I had the privilege of seeing the "radman" on Tuesday (Dr. William Small, Radiation Oncologist, NMH). Dr. Small was frank, telling us that due to the lack of data of the effectiveness of pre-operative radiation, coupled with my pre-existing adrenal insufficiency, the a pre-op radiation treatment may or may not shrink the tumor at all. Add to that how sick I would probably get after radiation ("barfing") and we can eliminate option 4. There is still a possibility of needing radiation after surgery.

(Option 3 is out-of-the question too. There's just not enough data!)

During my appointment with Dr. Small, Dr. David Bentrem shows up. Dr. Bentrem is the chief surgical oncologist at NHM and is one of those amazing doctors. He's doing networking on my behalf, exploring all the options, listening to my concerns, checking MRI footage, making game plans. Dr. Bentrem was confident that he could cut out most of my tumor, and I firmly believe in him.

So, I already have a date with the knife: Friday, April 4th. Dr. Bentrem will perform the surgery, which should last about 6 hours. A day or two after recover, they'll start the intraperitoneal chemotherapy treatments. Hopefully, they've caught it in time, they'll get it all out, and it won't come back.

wefeheizen [userpic]

That Bloody C-Word

March 10th, 2008 (09:05 am)

I have this back of an envelope that I hastily scribbled notes down on with pencil late Friday afternoon. I was talking with one of Northwestern Memorial Hospital's top cancer surgeons, an alpha-dog that suffers from doctor speak. Some of my sloppy notes include:

  • lining of cavity tumor
  • asbestos exposure
  • soft-tissue
  • Sloan-Kettering
  • pre-shrink, pre-surgery
  • rare tumor
  • mesothelioma

During the 4 minute phone call, the doctor told me I had cancer (peritoneal mesothelioma) and that teams of specialists would be tackling the problem of the large tumor that they found in my abdomen a week before. They'd have meetings, consult with top cancer labs, find me experimental trials. My immediate feelings were relief! We now know what I am sick from, and we know what we are up against.

The first thing you do when the doctor tells you that you have cancer is Google greek-words. There isn't much information out there about mesothelioma, but I remember a late-night television ad for a class-action lawsuit for asbestos workers. Stats says 80% of those exposed to asbestos will get this rare cancer within zero to 80 years. I have never knowingly worked with asbestos, though I did lick a lot of funny things as a kid. No, my growth is of the random multiplying cells type, origin unknown.

As you gather the data in your addled brain, (explanations, causes, treatment options, cures...) your mind notes the morbid facts you come across. I saw one place where the survival rates for mesothelioma were 50%, 35% and 14% over 3 years. In one journal article, some Italian doctors called my cancer a "universally fatal" disease. I laughed because the prognosis for life is exactly the same.

That Friday night, I let my parents, sisters and friends know my diagnosis. We all have more questions than answers right now, and I am headlong into my own research into the disease, its management and treatment. Everyone has been supportive. Professor Anderson sent me a link to a Stephen Jay Gould article about surviving mesothelioma, which was well received. And I'm being taken care of by Miss Snow, who is doing an outstanding job.

I am still in shock, but I'm not putting anything on hold!

wefeheizen [userpic]

Freakin' Timmy O'Tooles

March 3rd, 2008 (06:31 pm)

Friday, February 29th was supposed to be my last day at the Feinberg School of Medicine. I was leaving for a job as a Sharepoint guru at the American Medical Association. The day started out funny... I had a pain in my tummy, which I attributed to nerves and the desperate need to relieve myself. Despite several trips to the old toilet, nothing was "moving" so as to say.

It was my last day, and my Friday IT lunch crew was taking me out to celebrate my moving on from NU. I met up with Jasmin, James and Edgar at Lurie, and we planned to hit Timmy O'Tooles for burger meat and frenched fried taters. I remember sitting on the couches in the lobby of Lurie waiting for the crew to gather. My head was spinning. We got up to go, and leaving the southern exit doors, I felt like I was going to die...

I shouted out to my homeys and said, "Guys! I need to go to the hospital! I'm having an adrenal crisis!" They gathered me up, slightly confused. The hospital was across the street from the south-east corner of Fairbanks and Huron where we stood for a beat, awaiting the light to change. I didn't make it. I kind of passed out right on the corner. I closed my eyes and barked commands to my colleagues. Someone got my phone and I demanded they call my girlfriend...

An ambulance came. They drove me 1/2 a block to the emergency room, after sitting for 30 minutes to get and IV in me. I get to the ER at NMH, which is bustling for the Friday afternoon. I get a sodium chloride drip, some glucose, and a stress dose of cortisol. They examine my belly, especially the right hand side. They check my hemoglobin. It's low. The take me for a CT scan. I'm bleeding internally, and...

They find a huge mass in my abdomen, sitting on top of my small intestine. They let me and my girlfriend and sister look at the CT scan results. There's definitely something there that shouldn't be there.

After a long wait, I'm admitted to the hospital to the surgical ICU. They are watching me close because the mass inside me was bleeding. ICU is annoying because they check your vitals every 5 seconds, but I'm too weak to complain.

My boss from FSM comes to visit me Friday night. He tells me he never processed my work discharge papers, just in case there was a lapse in insurance coverage. What a guy! After some deep thoughts about my life, my career and where I needed to be, I came to the conclusion that the AMA was not for me. My boss had mentioned earlier that day that he'd be glad to welcome me back at any time, any time at all. That night I told him that I believed in signs, and I would like to continue my tenure at FSM. He agreed but mentioned that my first priority was to get better.

I won't bore you with talk of MRIs and biopsies and pain medications from that first 5 night stay in the hospital, but the fine people at FSM have been so awesome, that I'm glad I'll be going back to a place where I feel like a member of the family.

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