Tag Archives: Diagnosis

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

“After two days in the hospital, I took a turn for the nurse.” – WC Fields

wickedicked

I know some of you are more interested in my diagnosis than my hunger pains and ever spiraling love of “12 Corazones” on Telemundo (Wikipedia: The show is hosted by Penelope Menchaca and features advice from co-host Edward’O, a flamboyant Nicaraguan astroanalyst).


Hodgkin’s Lymphoma, 2B


PET scans show no additional activity besides the original CT scans – mass is isolated to upper abdomen with small growth above the clavicle on either side of my neck. These small branches classify it as a Stage 2. Apparently, this type of mass is quite big taking up 60% of my chest cavity. It is also quite hard – the radiologist bent two needles – but these conditions are not alarming.


The “B’ represents the presence of certain symptoms, including night sweats, more than 10% loss of body weight and extreme sexiness even when the patient’s head looks like a Macy’s Day Float.


Bone Marrow biopsy has not shown any additional cancer cells. Which is great news.


I have SVC Syndrome (Superior Cava Syndrome), which is an obstruction of the blood flow from my head and arms into my heart. This is causing blood clots all the way up my jugular, which will be treated after we get the mass to breakdown. Time TBD. These blood clots pose no immediate threat to my heart or brain.


Also, I’ve got some restricted airflow but my lungs, heart and breathing are registered as normal. I just won’t be running any marathons soon.


Tomorrow (Thursday), I’ll get the results of one final biopsy which will more exactly determine what the mass is made out of. Hodgkin’s is kind of rare and has numerous characteristics involved and my oncologist wants to be absolutely definitive in his diagnosis before we begin chemo. I think he also likes having me around.


There are lots and lots of web sites available on line with information about my condition. Most of which are written by Swedish bloggers.

The important thing is that this is an extremely treatable condition which responds very well to chemotherapy treatment. My summer is going to suck. And I look forward to keeping in touch with all of you and seeing you again 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.

Sweet sweet marrow

Bone marrow

That will be me in about 15 minutes – but my hair is not in a pony tail and I am not wearing an adorable Abercrombie and Fitch outfit.

However, I will be out on whatever pain killers they can give me.

The word on the street is that bone marrow biopsy is a bit…um…uncomfortable. Now, some people say it is no big deal. And those people handle the problems and paperwork for commercial production companies and are up to their knees in other people’s problems all day. Me? I’m a little more thin skinned.

Baby steps baby steps. More information coming in as we speak.

Gotta go figure out if I have all that extra back fat like the girl in the little picture above. I hope not. How embarrassing – what are those? Demons?

Some prelim info

Day 5. Running low on supplies. Might have to eat Johnson’s leg. Can’t start drinking sea water. Can’t watch any more Telemundo. Started reading Maxim. Oh God.


Things are good. Hospital is great. Nurses are great. The doctors who know what’s going with me are great. I think the staff still thinks I’m funny….but I also think they kinda wish I was just another comatose person in a hospital bed so they didn’t have to pretend to laugh at my jokes.


Initial diagnosis is Hodgkin’s Lymphoma – the most treatable kind of cancer there is. Not sure of the stage – need more tests. I’ll get more info on Monday and begin treatment soon.

Definition of Hodgkin lymphoma: A cancer of the immune system that is marked by the presence of a type of cell called the Reed-Sternberg cell. The two major types of Hodgkin lymphoma are classical Hodgkin lymphoma and nodular lymphocyte-predominant Hodgkin lymphoma. Symptoms include the painless enlargement of lymph nodes, spleen, or other immune tissue. Other symptoms include fever, weight loss, fatigue, or night sweats. Also called Hodgkin disease.

FYI – that is an exact list of my symptoms over the past 5 months. Kinda figured some doctor may have noticed it earlier. Guess not.

As the nurse says – chemo will be 5 months of suck. I’ll mostly be outpatient but have to be in the hospital through the first treatment.

I’ve also got other side conditions. The vein from my head and arms is almost completely cut off from my heart and I’ve got some blood clots to deal with. My heart and organs are clear. I’ve got some breathing restrictions – so I won’t be able to participate in this year’s company sack race. But treating the lymphoma should cause all these other things to clear up. And then my face will go back to handsome skinny Steve instead of John Lovitz Alec Baldwin sized Steve.

I’m back on steroids, which I was taking for the ‘sinus infection’ and they cause me to look and feel much better than I do. Ironically, steroids are a very early treatment for Hodgkin’s and that’s why I felt so great when I was getting them for my sinuses. A red herring, indeed. So I look and sound better than I am thanks to Roid Rage.

Probably more definite info tomorrow. Until then, the Hoochy Hoochy Sunday Morning Show is on Telemundo….

Backstory

As most of you know, I have been fighting what I thought was a sinus infection for about 6 months. I went to see quite a few doctors in the process of getting cured. I spent about 3 months getting terrible care at the Motion Picture Clinic – “I can give you an MRI and antibiotics, or I can just give you antibiotics now. I’m sure its just a virus” and an ENT who gave me a low resolution scan in his office and proscribed me with 2 months of over-the-counter Mucinex based upon a faulty scan.

Even after not feeling any better after 3 months, my diagnoses were still coming back as a sinus infection. My symptoms were head swelling (facial edema) especially in the morning, congestion in nose, cough, soreness of the eyes, headache, difficulty sleeping, snoring, some shortness of breath, and night sweats. I finally got a better resolution scan in February which showed acute and chronic sinus infection – so we thought we were on the right track.

An allergist tested me for 100 different allergies – nada. No fungus. No bacteria. I went on a month of antibiotics and prednisone (steroids) and I felt great during that time. Bouncing off the walls, limitless energy, redecorated the apartment. But still shortness of breath after heavy lifting. And as soon as I stopped taking the prednisone, I went right back to my same symptoms.

5 months after this started and I’m worse then ever. Swelling in the neck and bulging veins across my shoulders started making my good friends nervous – and they are both nurses. Also, Jen watching my face turn purple after I did some heavy lifting while bent over wasn’t a good sign either.

Onto another doctor who took one look at my swelling neck and crystal clear sinus scans and he scheduled me for a chest x-ray, convinced that my sinuses had nothing to do with my condition. My nurse friends emphatically suggested that I go the ER – where they would not release me without figuring out what was wrong.

Computer and Starbucks in hand, I went to the UCLA Westwood Emergency Room. In that brand new shiny building full of brand new shiny doctors and nurses, they did an immediate cat scan and found a large mass in my chest (16cm x 14cm x 7cm).

And that’s the day I found out I have cancer.

In a way, a relief. I’ve been sick for a long time. Now begins to road to recovery. More soon.