Saturday, July 31, 2010

First In-Home Nurse Visit

VNACJ Nurses of the 1930s

The Visiting Nurse Association of Central Jersey (VNACJ) began with a meeting of volunteers on June 24, 1912 at Brookdale Farm, and has since evolved into one of the premier providers of community health care services.

Madeline, our VNACJ nurse, arrived today around 11:00 am. She was absolutely terrific, and couldn't have been nicer. In addition to redressing the wound, she answered some of our questions:

Q: If my wound was infected, why wasn't I prescribed antibiotics?
A: I did not have a fever which meant that the infection was most likely localized, and therefore the entire body did not need to be treated with antibiotics.

Q: What is the purpose of reopening the wound?
A: Usually wounds heal from the inside out, but in my case the wound healed in reverse: basically the top external portion healed over before I was internally healed - creating a "pocket" where infections can occur. The point of the packing is to keep the wound open so that the inside can heal fully.

Q: How will this wound eventually close - do they just sew it up?
A: It's unlikely that I will need stitches. Most likely, as the wound heals, the doctor will decrease the amount of packing, until eventually all of the packing will be removed. The entire wound will then be covered by a bandage, and the body should naturally heal the wound close.

Since Gary did such a great job redressing the wound, she feels that a nurse is not needed every day (and we agree). I am scheduled to receive two more in-home visits next week: Monday and Friday. She really provided some peace of mind, and Gary and I are much more confident that we can tackle this latest hurdle.

A Moment of Zen

The secret of health for both mind and body is not to mourn for the past, not to worry about the future, nor to anticipate troubles, but to live the present moment wisely and earnestly - Buddha

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Friday, July 30, 2010

Whoa!! I was NOT expecting that!

Cancer has been a land of "firsts" for me: first MRI, first CT, first endoscopy, first bowel prep, first anoscopy, first sigmaoidoscopy, first colonoscopy, first surgery (ever), first foley catheter (you get the picture).

Today was another first - the first time we had to change my wound dressing. We started by reviewing our notes from yesterday's appointment (we have a small red moleskin notebook that we take to every appointment):

Step One: remove the old bandages and packing
- peel away the very outer bandage of sticky gauze
- remove the two squares of dry gauze
- using the tweezers, remove the approx 2 foot strip of "packing" that is stuffed into wound

In the mornings, I am supposed to take a shower between steps one and two; and let the wound get soapy water into it.

Step Two: repack the wound
- cut a 2 foot strip of packing
- soak the packing in saline, and ring out excess water
- using the long cue-tips, pack the wound - leave a little bit sticking out
- place two squares of dry gauze over the packing
- cover with a bandage of sticky gauze

Next, we laid out all of our necessary "equipment" on the bathroom counter: tweezers, scissors, "packing", gloves, extra long q-tips, bandages and saline (mise en place baby).

We decided the process would work best with me lying down, so after I was comfortably resting on a towel in bed, Gary removed all of the dressing perfectly; and when he was done, I looked down and saw the wound, for the first time.

You see, I was so nervous yesterday that I didn't look at what Dr. Nash was doing when he was re-opening my wound (I basically just squeezed the stuffing out of Gary's hand and closed my eyes). In my mind, I guess I pictured a couple stitches being cut away, revealing a dime-sized hole which was then packed with a little gauze.

So when I looked down, I was shocked to find that Dr. Nash had taken ALL of the stitches out, and there was a 1.5" gaping slash in my gut. I have never seen anything like it. Since the wound had been stretched open by the packing, it looked as if I was actually missing a chunk of my body (like a shark bite).

Immediately, I felt this overwhelming sense of panic wash over me, and I began uncontrollably sobbing, only momentarily stopping to choke out the same sentence, over and over again: "I don't think I can do this". It was the first time I was really scared since my diagnosis.

Gary calmed me down and suggested that we just put a very loose bandage over the wound so I wouldn't have to see it as I took my shower. It was a brilliant idea. Although still crying, I was able to take my shower and Gary expertly repacked the wound.

Now that the shock has worn off, I have "regrouped" as my mother would say. I still feel a little self-doubting, but I know in my heart that I CAN do this; I just need to work on some breathing and visualization techniques for the next "first" can catch me unawares.

"I know God will not give me anything I can't handle; I just wish that He didn't trust me so much." ~ Mother Teresa

Thursday, July 29, 2010

Warning! Not for the Squeamish

Cancer patients and doctors often speak in terms of percentages (survivor percentages, staging percentages, recurrence rates, etc). Even the treatments themselves carry risk factors.

Fact: On average, only about 10% of abdominal surgical wounds become infected (this percentage is lower at Sloan-Kettering).

In my case, we did everything possible to reduce the risk of infection. Firstly, I was instructed to take a shower the night before and morning of my surgery, using nothing but Hibiclens Antimicrobial and Antiseptic Skin Cleaner Liquid to reduce the risk of infection. Secondly, Dr. Nash was able to laparoscopically remove the 20 lymph nodes and foot of colon through one small incision, thereby decreasing the risk of infection. Finally, during surgery, antibiotics were administered.

However, it is impossible to completely eliminate the risk of infection with this kind of surgery, and despite these efforts, my wound still became infected.

Yesterday morning, I was washing my hands at the bathroom sink when I noticed the front of my shirt, by my incision area, had some light blood stains on it. When I lifted up my shirt for a closer look, clear liquid began trickling through the translucent surgical adhesive and down my abdomen. I called Gary in to look at it, and we were able to stop the drainage by having me lie down and gently blot the area with a tissue.

We called Dr. Nash's office and sent them a picture from Gary's iphone (photo on left). Based on our description and photo, Dr. Nash said I'd better come in.

To be honest - I thought the wound looked pretty good, and I was being over-cautious; however, as soon as Dr. Nash saw it he was able to determine that it was indeed infected, and the wound would have to heal from the inside out.

He explained that the redness around the wound, in addition to the fluid build up, were signs of infection. He then removed the clear, surgical adhesive patch (looks shiny in photo), reopened a portion of the wound (cut away stitches) and drained it. Afterward, he stuffed the "hole" with gauze. Finally, the entire incision was covered by gauze.

Dr. Nash informed us that this "dressing" would have to be changed twice a day. Gary was trained so that he will be able to change the dressing in the morning, and the office is going to arrange with my insurance for a home-care nurse to come and change my dressing in the afternoon.

Lessons Learned:

1. Use your iphone (or any camera phone) to digitally send pictures to your doctor if you think something is wrong.

2. Always error on the side of caution.

3. Don't rely on objectively concrete statistics when it comes to managing your own personal health care.

A Soldier's Prayer

Growing up, "The Prayer of An Unknown Confederate Soldier" was taped to our refrigerator door. When I went to college, my mother gently pushed aside the few scattered magnets that had settled along its borders, peeled back the yellowing tape, and gave me the prayer. Eighteen years later, that faded, worn piece of paper (that fell victim to more than just the occasional wayward kitchen splatter) remains one of the most valuable things that I own.

The prayer transcends politics and religion to reveal a fundamental truth about the human condition: quality of character is not determined by the types of challenges one faces, but rather by how one faces any type of challenge.

My mother, Adria DiMaria, contracted the polio virus when she was five years old, which left her with significant weakness in both legs. After being hospitalized for a year, her primary treating physician said that he would "tear up his medical license" if she ever walked again; my mother not only walks, but is currently training to become a member of the US Para-equestrian Team and compete in the specialty of Para Dressage at the Paralympics in England (2012). [Click HERE to read her incredible inspirational story.]

With the words of this prayer in my heart and my mother at my side, my cancer diagnosis and treatment has never been a burden; it has always been an opportunity to become more "richly blessed".
The Prayer of An Unknown Confederate Soldier

I asked God for strength, that I might achieve.
I was made weak, that I might learn humbly to obey.

I asked for health, that I might do greater things.
I was given infirmity, that I might do better things.

I asked for riches, that I might be happy.
I was given poverty, that I might be wise.

I asked for power that I might have the praise of men.
I was given weakness, that I might feel the need of God.

I asked for all things, that I might enjoy life.
I was give life, that I might enjoy all things.

I got nothing that I asked for—but got everything I had hoped for.
Almost despite myself, my unspoken prayers were answered.
I am, among all people, most richly blessed.

Tuesday, July 27, 2010

Dr. Garrett Nash & Sloan-Kettering: Going the Extra Mile

One thing that sets Sloan-Kettering Cancer Center apart from other hospitals is its focus on both a patient's physical and spiritual well being.

For example, the day after my surgery, a eucharistic minister came to my bedside and asked me if I wanted to receive holy communion. (I had identified myself as Catholic on my pre-admission forms.) I immediately felt stronger and calmer after receiving the Sacrament, and much more willing to face the day's challenges.

In addition to being sensitive to religious needs, Sloan-Kettering also fosters a sense of community and hope among its patients. Every nurse, doctor, and staff member who walked into my room had a smile on their face and cracked jokes. This jovial attitude spilled over into the hallways, where patients would cheer each other on as we did our required daily "laps" around the floor. I felt like I was completing my first marathon instead of just shuffling a few feet, holding onto my IV pole for support.

The 15th floor (my floor) is home to the Gastric Mixed Tumor/Colorectal Cancer Unit as well as the hospital's renowned recreation room, which was described by the NY Times as "something of a cancer patient’s corner bar, minus the booze". The recreation room has daily activities (see my previous blog posts about the Ritz-Carlton pastry chef demonstration and "look good feel better" program) as well as a pool table, library, and outdoor patio. The purpose of the room is to limit "down time" - when a cancer patient's mind is likely to drift to places that are dark and defeating.

My doctor, Garrett Nash, also demonstrated the difference in Sloan-Kettering's approach to patient care. Case in point, as soon as Dr. Nash found out my pathology results (Thursday night) he called me at the hospital. He could have easily waited until morning rounds to tell me the good news, but he went out of his way to ease my mind.

As if that weren't enough, Dr. Nash visited me on Saturday, his day off, in his running gear. It turns out that he runs to raise money for cancer research! He is currently training for the NYC Marathon in November as a member of Fred's Team, which is a program that raises money to support crucial research at MSKCC, "bringing us closer to a world without cancer - one mile at a time." [Click HERE to visit Dr. Nash's donor page and support Fred's Team.]

Sloan-Kettering truly embodies Francis Peabody's famous quote: "The secret of the care of the patient is in caring for the patient".

Sunday, July 25, 2010

Nursing's BEST: Sloan-Kettering

I was on the 15th floor - and the nurses on the floor (MSKCC’s Gastric Mixed Tumor/Colorectal Cancer Unit) were named ADVANCE's 2008 Best Nursing Team in NY/NJ.

The personal care and attention was nothing short of extraordinary.

Read the full article here.

First Night Home

I am so happy to be home. There is nothing better than lying in bed, typing this blog, watching "Criminal Minds" and knowing that any second Gary is going to come home from grocery shopping for our new and interesting culinary adventure in low fiber, low residue, low fat cooking. (We are going to be posting any successful recipes.)

Couple of notes about the ride home: the NJ Turnpike is NOT the smoothest ride with a healing 1.5 inch incision in your gut. Also, it's a good thing to take anti-nausea meds BEFORE you get in the car.

I'm going to be working on the blog over the next few days - even my old tune in often.

Hospital - Day Six

I just saw my doctor who said I could go home!!

I felt every single one of your warm's about a 6 week recovery; please continue to hold me, my family and friends in your hearts.

Guess it's time to take down this Matisse print mom bought when she and my cousin Carly went to the MOMA on Wed.

It sure did add a touch of class to the room.

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4:15 am Vitals (BP, Temp, NYC Subway)

One thing you get used to in the hospital is being woken up at all hours of the night for vitals (blood pressure, temperature, blood oxygen), shots, and getting blood drawn. However, as soon as I saw him, I knew this nurse, scheduled to take my 4:15 am routine vitals, was going to be different. He was 6'3", 180 lbs, African American, around 50 years old, and had huge patches of major wild cats (leopards, tigers etc) sewn all over his scrubs. What a character.

I had "Brave Heart" on the TV, without the sound, and he took one look at the screen and said: "Oh yea, this guy gets pushed out the window"...5 min later - he was right, a guy gets pushed out of the window of a castle. (I never did see the movie so I can't elaborate on the scene; the TV was just on because I couldn't sleep.)

This started a conversation about evil and the NY subway, which went something like this:

"I was ex military so I always give people a once over and carry three things with me when I ride the subway: a flashlight, bottle of water, and pocket knife. There are a lot of tunnels down there and you don't know who you are sitting next to if the lights go out. I'll tell you though that if I saw that Rasputin joker get on the train I'd know something was up with that cat. He was supposed to be really tall and I've seen pictures...he looks like evil.

There are some scary, evil people in this world...(we talked about serial killers)...I was just reading about the Spanish Inquisition. Man, I can't understand them- they went after women who were free thinkers (he points to me....glad he can spot a woman-free-thinker when he sees one) and created a pool of malevolence which is where a lot of these other crazy people come from.

Like one time there was a guy lying on the floor of the subway car with a rooster on his chest and I said 'man are you serious with this chicken' but he just kept on lying there and put on a hat and sat in a chair when we got to the station. Other foreign police wouldn't let you lie in the middle of a subway car with a chicken; nope, they'd beat the breaks off you."

Indeed they would. I think.

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Saturday, July 24, 2010

First Non-IV Dinner

First solid meal: pasta, tapioca, tea, mashed potatoes

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Hospital - Day Five

Like Bill Murry said in Ghost Busters: "looks like we are going to have to put some overtime in on this one"....

I can't eat or take pain meds without throwing up-- NOT a good combo!

So all you praying people out there-- I need you to put in some overtime so I can get outta here!!

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Thursday, July 22, 2010

Guest Blog Post: Gary

Great News!!! Mar's pathology reports are back and there was NO CANCER in either her lymph nodes or her colon. We are beyond thrilled - now we can focus on recovering from surgery with a clear mind. WOO HOO!!!

Wednesday, July 21, 2010

Hospital - Day Two (Beauty and Hope)

Today my mom signed me up for a very special program called "look good, feel better", which is a free, non-medical, brand-neutral, national public service program created to help individuals with cancer look good, improve their self-esteem, and manage their treatment with greater confidence.

I should have seen it coming ... My mom's nickname is "Julie the Cruise Director" (after the TV Love Boat character) because she always has a little adventure up her sleeve. Whenever I visit her in CA, there is literally a daily itinerary scribbled on the back of a used envelope - taped to the refrigerator door. So leave it to her to add "fun" to my "fighting cancer" agenda.

About six patients were treated to a complete make over, complete with a make-up bag full of designer make up to keep. This program, along with the patient recreation room (also on my floor), were recently featured in a NY Times article. The volunteer in the picture on the left, all in pink, was actually my make-up artist and my angel...she made me feel about a million feet tall.

Minor set backs today included needing to get foley catheter put back in, a lot of nausea / throwing up, and a treatment of magnesium and potassium which basically feels like fire being injected into your veins. Tomorrow the epidural should come out... I hope the pain is ok.

In the words of Billy Crystal, it doesn't matter if you feel terrible as long as you "look absolutely mahvelous dahling" ...he was on to something; it definitely helps to face challenges with a smile (especially if that smile is perfectly coated in high-end shimmery pink lip gloss).

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Tuesday, July 20, 2010

Hospital - Day One

Yesterday's surgery went exactly as planned. I do not have any recollection whatsoever of anything that happened after I received the sedation for the epidural...apparently I posed some good questions to the doctor, but I have no memory of even seeing the doctor.

They were able to take out about one foot of colon and 20 lymph nodes through a 1.5 inch incision through my belly button. The doctor said nothing looked wrong to the naked eye, but it will be about one week until pathology comes back.

I had some problems sleeping last night because the epidural medicine caused poison-oak like itching; but after an injection of Benadryl and a change in narcotics I felt much better. I was able to drink clear liquids this morning and walk around a bit. I also got a visit from my girlfriend Christine, who brought me the cutest little doll in the world.

Gary and mom have been amazing, and were slightly rewarded today by taking part in a cooking demonstration by the pastry chef from the Ritz Carlton who held a class in the patient activity center on how to make molten lava cake...complete with a tasting and lovely parting gifts of a pair of Ritz Carlton slippers!

They are right now predicting I'll be released Sat or Sun, but it could be sooner (I hope). Thank you for all of the love and well wishes.

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Monday, July 19, 2010

Today is the Day

It is always strange arriving at a highly anticipated day. Whether it's a joyous occasion like a wedding or a heartbreaking gathering like a funeral; weeks, months, years of planning are played out within the same short 24-hr time period, after which the sun rises on a "new normal" and we learn to adjust our hopes and sorrows to somehow account for the magnitude and consequences of that one highly anticipated day...

"Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." - Susan Sontag

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Sunday, July 18, 2010

The Final Countdown

A nice fellow by the name of Darrell called with my surgery time tomorrow: I check into the hospital at noon; surgery is scheduled to begin at 3:00 pm.

Memorial Sloan-Kettering Cancer Center
1275 York Avenue
New York, NY 10065

Since Darrell's call, Europe's great 80s rock anthem, The Final Countdown, has been running through my head (and making me smile):

We're leaving together
But still it's farewell
And maybe we'll come back
To earth, who can tell?
I guess there is no one to blame
We're leaving ground
Will things ever be the same again?
It's the final countdown

Clear Liquid Diet

This is my first "mobile" blog entry. Last night I was treated to my grandmother's delicious homemade lasagna and Hoffman's ice cream with the Gozicks before topping off the evening with fresh squeezed lemonade on the Point Pleasant boardwalk.

Today, I start my clear liquid diet: Coffee (without milk); Ginger Ale; Jello; Juice (no pulp), Ice Tea

The purpose of the diet is to get my calorie count up while "eating" easily digestible food that won't leave any intestinal residue. It's a little strange because some items don't "look" clear (coffee) but are considered clear for the purposes of the diet.

This is my third time on this diet in the last four months, but the first time a nurse really explained it to me and said I could have coffee.

As long as I can have coffee, then the rest is a cake walk (bad idiom). It's a little like that scene in the movie "Airplane" when the flight attendant is explaining that there is no captain and the plane is crashing to a calm group of passengers who begin whispering, and then quietly announces: "and we are out of coffee" at which point absolute chaos breaks out. Never underestimate the power of caffeine (nor the comedic genius of Leslie Nielson).

Really, I have nothing to complain a couple of months I'll be back to eating whatever I want; diabetics have a daily, life-long restrictive diet -- which is much, much worse.

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Thursday, July 15, 2010

Post-Surgery Diet Restrictions

One of the big changes after Monday's surgery will be my restrictive diet (thank goodness it's a temporary change...I am Italian after all, and food is life and love all rolled into one delicious bite).

Here is a list of foods I can eat for the 4-6 weeks following surgery. Gary is an awesome cook - so if anyone has any great recipes out there, please send them along! Everything that I am allowed to eat is listed below.

Low-Fat, Low-Fiber Diet (aka mostly boring food)

= low-fat or non-fat of the following items: margarine, mayonnaise, salad dressing, sour cream, cream cheese

Fruits = canned fruits, applesauce, a ripe banana, fruit cocktail

Meat and Meat Substitutes = tender beef, pork and lamb that are well-cooked and trimmed of any visible fat, skinless poultry, fish, eggs, low-fat tofu

Veges and Potatoes = well-cooked or canned vegetables without skin, lettuce, carrots, beets, asparagus tips, white potatoes without skin, string beans, tomato sauce

Soups = reduced-fat bouillon, broth

Beverages = coffee (THANK GOD), tea, apple or grape juice, cranberry juice

Milk Group = 1% or skim milk, low-fat peach flavored yogurt, low-fat ice cream without chocolate or nuts, low-fat cheese, low-fat pudding made with skim milk (no chocolate)

Breads = white bread or rolls without nuts, coconut or dried fruit; saltines, Oyster crackers, Graham crackers, waffles, pancakes, animal crackers, rye bread without seeds

Cereals and Grains = refined cereals such as Rice Krispies or Special K, farina, cream of wheat, white rice, grits, regular pasta, couscous

Deserts = low-fat plain cakes and cookies, gelatin, sherbet, hard candy, marshmallows, jellies or jams without seeds

Even eating from the above list of foods, I must stay under 40 grams of fat and 12 grams of fiber a day.

There are certainly some obvious meals: pancake with a ripe banana and a tablespoon of low-fat margarine; pasta and tomato sauce with asparagus tips; mashed potato with skinless chicken and string beans...but we are talking six weeks, 5 small meals a day = 210 meals to plan, so any creative recipes or snack ideas will be very, very welcome!

Tuesday, July 13, 2010

Sloan-Kettering in Criminal Minds

Anyone who knows me also knows that I am obsessed with crime dramas - especially criminal profiling. For all you "Criminal Minds" fans, I was recently watching a marathon and one of the episodes gave a shout-out to my hospital, Sloan-Kettering.

Episode: What Fresh Hell?

Summary: When a young girl is abducted in broad daylight from a playground in a seemingly safe neighborhood, the BAU initially believes her father is responsible. When he is able to provide an alibi, the team is forced to look for clues near where the girl lives to determine who is really responsible. What was the father's alibi? He tells agent Gideon that he was at Sloan-Kettering Hospital, secretly receiving cancer treatments in NYC when she was abducted.

Saturday, July 10, 2010

Pre-Surgery Appointment at Sloan-Kettering

On July 8, 2010 we traveled to Sloan-Kettering for my final appointment before my surgery with Dr. Nash in a week. They did the usual: EKG, chest-xray, blood work; standard stuff.

After we left Sloan-Kettering, I reflected a bit on the journey so far. In the last six months, I've had 16 doctor appointments, two lab work ups, one surgery, and six diagnostic tests: MRI (2/17); CT scan (3/18); endoscopy (4/2); anoscopy (4/28); sigmaoidoscopy (5/20); and colonoscopy (6/25). All of these diagnostic tests came back negative - even, unfortunately, the MRI and CT scans which failed to identify the large carcinoid tumor in my appendix prior to my first surgery.

Also, July 19th will be the fourth time I'll be put under general anesthesia in the last four months; however, it will be the first time that I'll also have epidural anesthesia. This will allow me to control my pain with the push of a little button for a few days following surgery, until I can eat and drink on my own.

After a sterile prep and draping, local anesthetic is placed to numb the area where the Epidural needle will be inserted. The needle for the Epidural passes between the vertebrae of the Spinal column to the Epidural space. Once the position is verified, a very small catheter(tube) is placed via the needle. The needle is then removed and the catheter remains in the Epidural space. The catheter is then taped to the patients back. Local anesthetics and narcotics are given epidurally via this catheter. The procedure usually takes 10 - 25 minutes.

How do I feel about getting an Epidural?

Initially, I was upset. I always thought the procedure sounded scary and painful; but, one thing you learn with cancer is nothing is as bad or as easy as you anticipate. I didn't think I could ever stand a foley catheter, but after minor complications with my first surgery, when I had no choice but to get one, I realized it wasn't that bad.

One of my favorite artists is Kate Bush, and I'm reminded of her lyrics from "Walk Straight Down the Middle" that sum up the reality of anything tough in life, including my next surgery:

But he thought, he was going to die

But he didn't

And she thought, she just couldn't cope

But she did

And we thought it would be so hard

But it wasn't

It wasn't easy, though.