Tag Archives: Hospital

New photos

Hey y’all.

I put up some new pictures of me waiting to get my Portacath put in and also of my 5th Chemo session.

They are a little graphic – if you don’t like to see stitches or needles or photos of my right boob.

Can be seen on my Flickr page: http://www.flickr.com/photos/sdickter/sets/72157618699964697/

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How I learned to stop worrying and love Glutamine

I feel like I spend a lot of time complaining on this blog. Complaining about my discomfort. Complaining about people who are bad at their jobs. Complaining that Miley Cyrus won the best song award at the MTV Movie Awards (the only time when Miley Cyrus will beat Bruce Springsteen at anything ever.)

Not a winner in my eyes.

Not a winner in my eyes.

Instead, I want to share with you an uplifting experience I had yesterday. At a doctor’s office. I know…I almost don’t believe it either.

I had an appointment at the Simms/Mann UCLA Center For Integrative Oncology. This is a department run by Dr. Mary Hardy – a woman who travels the world talking about how traditional cancer treatment (chemo, radiation) can be combined effectively with eastern medicine, nutrition, supplements and holistic treatment. She’s the person who connects the dots between all the different theories of cancer treatment and does so by making a practical plan based on each person’s individual situation.

From the moment I saw the office down the hallway and noticed the zen rock garden, I knew this was going to be a different experience than my previous doctor’s appointments.

This is more like it!

Dr. Hardy's office

The first thing they did was take measurements of my size, weight, body mass index and calculate how much lean fat I have. I am now at an ideal weight for my size after losing 10+ pounds from the Hodgkin’s Disease back in December. It took cancer to get me in shape. Would Alanis Morissette say this was ironic – “Dropping 10 pounds when adding a 16cm tumor in your chest? Isn’t that ironic? Dontcha think?”

After learning that I am a reasonably fit, 33 year old male in the prime of my life…I spent over an hour with Dr. Hardy discussing my situation, nutritional advice and supplements that will help me increase the efficiency of my treatment as well as help manage the side effects. We also shared a few laughs along the way.

What I liked immediately about her was that she asked where Jen was. She didn’t ask me if I was married. She didn’t ask me what was wrong with me. She had read the paperwork I had submitted, she remembered the information and she engaged me immediately. This is way better than the phlebotomist that tried to test me for pregnancy. For once, I didn’t have to fight for my medical care or worry about my treatment – I was able to trust the person who was caring for me.

This was such a welcome relief that I actually got a little choked up about it. I wasn’t upset about the cancer or the chemo – I was touched by empathy from a health care provider.

She laid out a nutritional and supplemental plan for me based on the type of treatment I was receiving and the side effects I am experiencing. Some of my plan is:

  • Allopurinol for my stomach
  • Mutli-vitamin
  • Whey protein – I’m on a high protein diet now, over 30g/day
  • Fish Oil
  • Flax Seed
  • L-Carnatine and Co-Enzyme Q10 for my heart
  • Immpower and Glutamine for my immune system
  • Melatonin

And the list goes on…

How to sneak protein into my diet. The importance of shakes. How to eat when I’m too nauseous to eat. How to make myself stronger. How to make this suck less. And the doctor will follow up with me after my treatment is done to keep me this way.

A bit of inspiration in an otherwise frustrating time. We heard good things about the Integrative Oncology department. I trust them. And I look forward to taking my 20 pills a day.

Beats giving myself shots, that’s for sure.

(Damn. I ended on a complaint…)

2nd Opinions

Not my actual doctors.

One week since my first chemo treatment.

Blood levels are normal. The doctor feels softness in the mass in my chest. I’m still fat-faced Steve, but the doctor told me he might not have recognized me because I look so different compared to how I looked in the hospital. A week ago, I was pushing beyond Alec Baldwin status…or at least to a magnitude of angry, drunk Alec Baldwin status (not cutsey, funny man, 30 Rock Alec Baldwin).

This was basically me.

This was basically me.

Here’s the most amazing thing that happened to me today: I had to get a chest X-ray. They sent me to UCLA Imaging outpatient office in Santa Monica. Wait 15 minutes. 5 minutes for X-ray. On your way. Easier than ordering lunch. Really. Jen even walked to Staples during the whole thing. I love UCLA.

I also got a few questions cleared up with my doctor today that weren’t clear to us before. We are keeping excellent notes and files about everything – but we thought we were missing a key document – the actual diagnosis. Up until today,I thought the only piece of paper I had with an explanation of my SVC syndrome was a doodle on a piece of notebook by the doctor.

I thought this was my diagnosis.

I thought this was my diagnosis.

Yesterday, we went for a 2nd opinion. Since we thought we didn’t have this ‘diagnosis’ document, the 2nd opinion doctor had a few questions about my condition that it seemed like we should have the answers for. Which made us worried. But it all got cleared up today. Which is good.


So far, the most difficult part of the treatment is the communication between patient and care givers. It has been hard getting bits and pieces of info from nurses and only seeing my doctor a few minutes each day in the hospital. Not that the ‘Chemotherapy and You’ booklet didn’t answer all my questions (it didn’t), but spending over an hour with the doctor going over everything step by step was a huge relief. Which proves: You can’t replace a doctor with a pamphlet, no matter how well written or how cute the clip art.

Not an actual doctor.

Not an actual doctor.

For now, the choice between doctors seems to come down – not to quality of care, because both doctor’s are excellent – but to bedside manner and communication. Do I want a doctor who worries a bit more than he probably should? Or a doctor who is supportive and upbeat? Should the patient know every little detail? How many outside opinions should the patient get before they begin inhibiting the decisions of his/her doctors? Do I want my doctor to have grey hair or a flowing mane of beautiful black hair?

Here’s some new information (I put it in red so everyone knows it’s important stuff and not jokey stuff):

  1. Yes, I have blood clots. And they will begin treatment in a couple of weeks for it. First we need to treat the tumor, then the clots. And we are monitoring the clots to make sure they don’t get any worse. But for a number of reasons, we can’t treat them until the tumor shrinks and takes off some of the pressure. No tumor = no clots = no swollen head = back to regular life.
  2. If you get a fever while under chemo, you have to go to the ER. A fever is a sign that you could die. (This probably should have been told to me before I was sent home from chemo, but good information nonetheless.)
  3. My white blood cell counts shouldn’t be on too much of a roller coaster ride. Hodgkin’s patients generally have stable white blood cell counts. But every patient is different. Even if my counts go down, they should go back up in a couple of days. These counts are the motivation for all the good nutrition, avoiding sick people, using Purell and general common sense stuff that goes along with chemo.
  4. Chemo attacks fast growing cells (like cancer). It also attacks fast growing cells in the lining of the mouth, lining of the intestines and hair follicles.This is why there are so many side effects, like gut trouble, hair falling out, etc.
  5. Everything makes sense if you actually get a good explanation and you don’t have to look at blogs and websites and hear it from 5 different nurses.


It is impossible to tell what my next 6 months will be like. I should be fine. I may have some ups and downs. Its all about staying healthy, eating well, staying as active as possible and plenty of rest.

And on a final, positive note, we were told that doctor’s like to treat patients with Hodgkin’s Disease. Because they get better. And every doctor likes to treat patients that get better. Makes the doctor look good, makes everyone feel good.

I’ll be happy to oblige.

Hospital food

Me getting my glucose level checked.

Getting my glucose level checked.

Because its my blog and I can share anything I want to, this hospital food website just brought back memories of my unexpected 8 day trip to UCLA Santa Monica.

http://hospitalfood.tumblr.com/

I checked into the ER not expecting to remain there for over a week. 3 ambulance rides. Some trips on a gurney. Many scans and whirling magnetic machines. I even got kicked out of the cafeteria because I was in pajamas and had an IV (who wouldn’t want to eat with me?)

But life in my particular Southern California hospital wasn’t that bad. I compared it to first class on a prisoner plane, ala Running Man – the bed was comfy, flat screen TV, but I couldn’t leave and I was hooked up to machines the whole time.

I consider myself very lucky. Sure, I’m going for a 2nd opinion tomorrow, but I’m staying in the UCLA healthcare system for now. The emergency staff was awesome (with some help from Fidel, my friend who was working that morning). The nurses in oncology were funny and sweet and caring. The doctor’s were efficient. The whole experience was far from perfect (thanks again for the informational brochure), but I can’t complain about the treatment.

And after my mom and her husband saw my sweet digs – view almost to the ocean, big menu available 12 hours/day, nice TV so I could watch the Flyers and Sixers lose – they have a great opinion of SoCal hospital care.

For the record, the above picture is me eating Peanut M&M’s while getting my sugar level checked. On this particular test, I was up to around 180 and had to get an insulin shot. Teach me to be the funny guy.

Chemotherapy and you

There will be a quiz afterwards.

There will be a quiz afterwards.

(I apologize, this one is more of a rant.)

Many of you must have a lot of specific questions about exactly what chemotherapy is and what it does to your body. I know I did. Fortunately for all of us, about 1/2 hour before receiving your first chemo treatment, the nurse brings in a booklet called “Chemotherapy and You”.

Seriously.

I can only assume it is made by the same medical publishers who gave you “So You’re Going to Have a Baby in 30 Minutes” or “Brain Surgery – Ins and Outs” or “Has Anybody Seen My Limb?” or, my personal favorite, “What Is It? Where Did It Come From? And Where Did It End Up In My Body?”

Since the chemo process is different for every type of cancer and every type of person and body type, I imagine it is quite a challenge to develop a booklet that meets eceryone’s needs. In the beginning, it advises the reader to not read the booklet right through but to skip around to relevant parts. I imagine, in the end, that is what memories of my life will be like…and I probably won’t know what the relevant parts were until its all over. But I digress.

Getting handed this book right before you get on the chemo-coaster was, for me, part of a larger issue with how to handle health care in general. (Cue: rant) I think we all have the same goals – people get sick and they need help getting better. But, once you take a solid step through the door of a hospital room or doctor’s office, patients seem to spend a large part of their time trying not to step on any cracks in the floor – looking down at their feet when they should be looking up at the doctor.

Medical treatment seems to take on this schedule:

1. Feel sick.

2. Get diagnosed.

3. Consider treatment.

4. Argue, fight, plead, organize, discuss, chase, beg and bargain with the secretaries and health care advocates working to deny you any procedure deemed ‘not-necessary’ as evaluated by lawyers and other non-medical personnel.

5. Meet someone who can help (sympathetic doctor, social worker, friend on the medical board, C. Everett Coop, Robert the medic)

6. Hopefully, we receive necessary treatment and care by highly skilled professionals. Or whoever has an opening in their schedule. Or get treated by whoever the affore-mentioned non-medical certified personnel recommend. Or find a clinic in the back alley of K-town.

7. Recovery.

8. Medical marijana card.

9. Fight more about bills.

The point of this rant – health care is more about litigation, share holders and profit then it is about health.

We all have stories. We all have friends and families who have suffered through this process. Suffering through it right now. I know I am fortunate – the film industry gives me a decent support system and I have a strong companion to help me find my way through. But, like so many other systems that are meant to reinforce and improve society, I believe that the health care system has been created to tear down the very structure it is supposed to support.

Other examples: buying a house, purchasing airline tickets, financial advising, information from mainstream media, incarceration, tobacco industry, trying to eat healthy, trying to stay fit, etc.

Like the financial industry giants who sold out middle america to turn enourmous profits in the housing market. Like the auto industries who refused to look ahead and deliver products that were safe, reliable and efficient instead of SUV’s that gorged their bottom lines. Like the food industry who maintains substandard food processing systems hoping that they have enough money put away so they can get through the next, expected recall instead of investing the money in delivering safe food.

Ah, the health care industry. Hospitals and doctors provided to you by insurance companies who do not have your best interest in mind.

Which leads me back to Chemotherapy and You.

There is 1 page devoted to questions like “How much does chemotherapy cost?” and “How can I best work with my insurance plan?” A little late for that when they are prepping the IV, but a nice touch.

There are 35 pages that deal with side effects. Side effects that may occur include:

– Appetite change                                         – Infertility

– Bleeding                                                       – Mouth and throat changes

– Constipation                                                – Nausea and vomiting

– Diarrhea                                                       – Nervous system changes

– Fatigue                                                          – Pain

– Flu-like symptoms                                      – Skin and nail changes

– Hair loss                                                        – Eye changes

– Urinary, kidney and bladder changes     – Infection

I guess the book works, because I got the majority of these side effects sitting in my room flipping to the ‘relevant parts’.

End rant. Its good to be home. Plenty of time to catch up on my reading.

The CureHealth insurance

Oh look, rent’s due

Side effects may include nausea.

Side effects may include nausea.

Still cleaning up after the chemo party yesterday. I was supposed to start at 1:30pm…didn’t get the action rolling until 5:30pm…then I still hadn’t started the full treatment until Family Guy was on around 8pm. Fell asleep with a long, slow drip in my arm. The lesson – try to squeeze your treatments in-between nursing shift changes.


So what can be said about this process that hasn’t been said somewhere before? I need to shoot-up through a regular IV until they can put in a pikline. But because my veins are all clogged, we’re not sure when/if I’ll be able to get the more convenient line. I’ve been stabbed more times this past week than a bodyguard at a Rolling Stone’s concert (heey-ooo!)…but a small price to pay for the results.


One of the drugs is known as the ‘Red Devil’ and it turns your pee bright orange. One of the drugs makes your veins sting. And all of it sucks.


The doctor is impressed with my reaction so far. I’ve already dropped from “Alec Baldwin” level but still have yet to re-attain my David Duchovny status. The lump in my neck is softer, breathing is clear, swelling reduced.


Energy is up. Stomach is stable. Appetite is good. Home.


I’ve got to hide out for awhile. Keep my strength up and immunity strong. And catch up on my Tivo.


Will see you soon.


The Beach Boys present…Pet Scans

Beach Boys

Yep. Definitely got into a nasty spill on the slopes yesterday. Must have landed on the rock, bounced into a tree, down the steps and hit my ass on the bar when I landed. Mhe. Give me a Bailey’s and Coffee and I’ll be all right.

Better yet, let me wash it down with a long, cool glass of irradiated sugar water. This will show if there’s any more cancerous activity hiding out in my body this morning. After these two safety tests, it might be chemo time.

I know it will definitely be sandwich time because I can’t eat again all morning. Which brings us to this morning’s poll.

If you had to starve yourself for 12 hours to take a PET Scan, which one of the lovely animals on the Beach Boys “Pet Sounds” album cover would you eat for lunch:

1. Goat

2. Chicken

3. Deer

4. Trick question: Phil Spector would have already killed all the animals in a hastily arranged ‘suicide’ scene.

And on a final note: My brother got married in England a couple years ago by the Church of England. Now, the COE has very strict rules about the use of G*D’s name during the ceremony. Can’t say his name. Can’t allude to his name. Can’t pray to his name. I’m not exactly sure who the COE does pray to (The Queen? Johnny Rotten? Dangermouse?) but using the Big Man’s name was a no-no. Which was fine until the 2 piece band that was playing in the loft of the beautiful barn where my brother was getting married delivered their final song as my brother and his wife signed their wedding book – “GOD ONLY KNOWS HOW I FEEL ABOUT YOU!!! GOD ONLY KNOWS!!! GOD ONLY KNOWS!!! GOD ONLY GOD ONLY GOD ONLY KNOWS!!!” The COE lady could have shut the thing down right there like a dated Monty Pyhon skit but she let the show go on. And God Only Knows what the hell the ‘instrumental’ band was thinking when they started singing that song.

Outie.