Saturday, September 30, 2006

Trust me, I'm a professional!

Communication...... I've come to believe that the difference between a SuperDoc and an AverageDoc is communication.

I visited a SuperDoc early last week. She communicated with me, then she communicated with my AverageDoc. Turns out that they knew the same info, shared the same opinion, and each one convinced the other to change a small part of the project plan. Unfortunately, AverageDoc still doesn't get it.


So it's up to the doc to answer patient questions and then tell thier patient the answers to the questions they DIDN'T ask!

It's not right to tell the patient "Come in for some x-rays and we're going to give you some pills."

"What are the Xrays for? What do the pills do?"

"Oh, the Xrays will tell us how your bones are doing and the pills will start your chemo."

"Ok, why are you interested in my bones, and what are the side effects of the chemo meds?"

"Oh, well....... it's very complicated."

"Then start explaining. I have time."

"Trust me, I'm a professional."

Professionals make mistakes and I don't come equipped with a reset button. Explain the whole thing to me and let me make some decisions (or at least understand the program.) Let me know what to expect so I can at least tell you if it's working or not. I can be our first line of defense against failure if I know what's supposed to happen.

Quite honestly, I feel like I'm a car and my owner isn't being allowed to watch what the mechanic is doing.

So if you're a doctor, don't leave the patient out of the equation. You should be treating a patient, not a disease! Subtle difference. Major importance.

Monday, September 25, 2006

I fixed......

I fixed the 'comments' section. You can now add your own witty reparte' to the equation. Just click on the "comments" at the bottom of each post.

Some doctors suck.

Ok, let me start off by saying I DO NOT HAVE WALDENSTROM'S MACROGLOBULINEMIA. We were misled by a young doctor who apparently has unusual motivations. Maybe he had a blank space in his Oncology Bingo that could only be filled with Waldenstrom's Macroglobulinemia. Well, he screamed BINGO and stood up too quickly, so he embarrassed himself when they checked his card.... and it turned out he only had another Multiple Myeloma.

Here's the deal. Internist #1 attended to me in the hospital, scheduled tests, came to a decision, and told me NOTHING DEFINITIVE. I could see concern in her face and voice, but she was reasonable and prudent in her distribution of information. I respect her actions.

Internist #2 is my PCP. #1 talks to #2 and they collectively derive the probability that I have Multiple Myeloma. Internist #2 tells me so. He also tells me that they have consulted with an oncologist who wants to see me ASAP and PDQ.

So Ed and I arrive at the oncologist's (#3) and we find him reading a web page on Waldenstrom's Macroglobulinemia. Once he's done his extensive research, he comes into my room and announces that I probably don't have Multiple Myeloma, but I almost definitely have Waldenstrom's Macroglobulinemia. He even asks if I'm a betting man......
Duh! Today I got the following email:

The test results are just about all back - it looks like you have multiple myeloma (IgA-lamba). We should also get a series of xrays to look for any bone lesions from myeloma. There are some additional tests being done on your bone marrow biopsy that aren't back yet, but it doesn't change your initial therapy.
We should start therapy ASAP of 2 different medications - one called thalidomide, the other called dexamethasone (both are pills).
Also, since you have anemia, we should also start a medication called Procrit (injection) to help your body make more red blood cells.
Do you want to come in this week to get started?

1) Thanks for playing YoYo with Ed's and my emotions.
2) Thanks for distracting us from our prior research.
3) Thanks for delaying / confusing our establishment of outside connections.

4) Thanks for thinking I'm gonna trust you without a very confirmatory 2nd opinion.

So, here's a lovely recap of the disease and what I'll be enduring. It's a disease of the blood that's based in the bone marrow. The way to put it in remission is to harvest a bunch of good stem cells from my bone marrow. Then they'll kill off all the bone marrow and all of the white blood cells. Then they'll put the good bone marrow stem cells back in me and hope they grow without re-creating the problem.

Yup, for those of you who remember high-school biology, that means I'll have NO immune system function for about 10 weeks. I get to live on antibiotics and boiled water in two rooms of my house for 10 weeks. Everything has to be cooked thoroughly, everything has to be pretty much tasteless (how do you sterilize table salt?) Are ya paintin' a little picture in yer head yet?

Of course, I get this kinda fun treatment after they chemo me 'til I glow in the dark and I'm hollow inside. Betcha I get down to 145#.... sexy hott!

It's really not gonna be as bad as the movie I just put in your head..... I'm just pissed off at the doc and I'm venting......

Good side? I can spell it. Other good side? There are enough patients that most doctors have seen other patients.

Saturday, September 23, 2006

I'm sorry.

Look, I'm not here to condemn any of you. I just wanna educate you a little. I know very few of us are trained in the right way to deal with a friend saying "I'm gonna die soon."

Most people say, "I'm sorry."

What the hell are you sorry for? I mean, you didn't do anything, so why apologize? You didn't give it to me, did you?

So here are my suggestions for dealing with the imminent demise of a friend, coworker, man on the street.

1) Be GLAD it's not you. Just don't say it.
2) Appreciate that the news can be life-changing for the victim. Ask how they're holding up emotionally.
3) Recognize that the victim is often worried about his family or a loved one, far beyond his concern for himself.
4) Offer your emotional and spritual support any time they need it.
5) Offer to talk to their spouse, S.O., or kids if needed.
6) Help them with preparations if you're close enough..... these are things families sometimes don't address even in times of inevitability.
7) Recognize that this could happen to anyone at any age. So get right with your family, your friends, and your faith. Do the paperwork and make the hard decisions now. It's not right for you to dump it on the people who are missing you.

Just don't say "I'm sorry."


Ok, here's the update. Looks like I have Waldenstrom's Macroglobulinemia, not Multiple Myeloma. They're closely related, but one is more rare than the other.

Well, in my usual inimitable style, I chose the rare one. Exclusivity has value! NOT!

According to the websites, only about 1500 people per year are diagnosed with Waldenstrom's. Unfortunately, this means that very very few oncologists have ever seen a case in front of them. What's that mean? It means I'm lucky enough to have more scientific mindpower researching this matter, between Ed and our friend Pam, than the hospital chain I'm visiting.

Anyway, the prognosis doesn't look good, and everything we read on the web is tainted by people trained to put a positive spin on the worst possible news.

As an example..... the doc says "patients live for years". Yeah, statistically they might, because this disease is generally discovered after the patient is 65, and when the patient is asymptomatic.... Therefore, he can live 8-12 years before the first of the big 7 symptoms appear.

Meanwhile, mine was discovered at 51 after I suffered thru 6 of the big 7 symptoms. What's that mean? Hell, nobody knows...... nobody's ever seen anyone with 6 of 7 walking around and going to the office every day.

So, keep an eye out on here. Keeping up with my progress will make you just as experienced and just as savvy as most doctors. ;-)

Just because I'm sick, doesn't mean I stopped being a wise-ass.

Sunday, September 17, 2006

OK, here's the deal with a little history.

In November of 2005, Ed and I moved to Seattle. Both of us had new jobs here and we fell into a life of work, play, and home renovation that we both enjoyed. Life was good.

Almost a year ago, I started noticing that my endurance was starting to wane. I was far from becoming a couch potato or a keyboard jockey.... in fact, the neighbors still thought I was the hardest working human on the block.... but I knew something was wrong. I had no real stamina, my pulse would rise if I did anything strenuous for very long, and in general, I just felt "off".

I actually suspected that I had a blocked artery and/or some sort of cardio-pulmonary disease. I could exhaust myself to the point that I could sense myself almost blacking-out...... simply not enough blood and oxygen to the brain. Slightly elevated cholesterol, 20 years of smoking 3 packs a day (quit 10+ years ago), and my 50 years on the planet made me think down a common path....... blocked arteries.... maybe I'd need a bypass in a few years.

Then about 6 months ago, things started to slide downhill rapidly, but I didn't recognize the change as anything drastic. Basically I just became unmotivated, lethargic, and unconcerned with the things that went on around me. I blamed most of this on my job...... I hated (HATED) working for Hologic and it showed in my attitude and my actions. Bingo, one thing follows the other, and my hatred of the job spread into apathy about home renovation and many other aspects of my life.

All this time, I was a bear to live with. I was grouchy, unhappy, and negative..... and I expressed myself often. Not a good thing. Thankfully Ed is a saint.

So Ed and I bought a boat. It was originally supposed to give us an activity to do together.....the boat always made Ed smile..... and we had fun when we were out on the water. But toward the end of one of our days on Lake Washington, I tripped over something on the deck and fell against the console with my ribcage. It hurt and I still believe I cracked a rib or two...... Believe it or not, it was a blessing.

The injured area tended to cramp spontaneously. It was a charley-horse type of cramp that was amazingly painful.... I saw a doctor about it and he determined that I'd bruised a nerve bundle, but that it would go away soon. He warned me not to tape my ribs up (to prevent pain) because the taping can actually cause pneumonia due to the accumulation of fluid.

So I didn't tape up, but the pain required that I sleep on one side of my chest and not breathe very deeply. I believe this brought on a case of bronchitis that ultimately raised the flag I'm sailing under now.

Ok, so the bronchitis started it's standard march for me..... lungs, then throat, then a slight nasal infection.... and usually, this would be the end of it.... One week of feeling lousy, but predictable and easily overcome.

But there was a twist. The creeping crud never left my nose. I was strapped with bloody noses, enormous discharges, and my endurance was measured in minutes, not hours.

I'd been to Urgent Care on two successive weekends for the bronchial part of this... and finally after a research call in Everett, I wandered back into Urgent Care on a pleasant Friday afternoon. I felt like absolute dog shit...... I hurt, I had no energy, and I was really tired of feeling bad.

Urgent Care took a blood test and documented my complaints.... a few minutes later they advised me I was going to Virginia Mason Hospital by ambulance. No, I couldn't drive myself. No, Ed couldn't drive me. I was going to travel with an EMT staff "just because".

It seems I was anemic. Anemic like "you shouldn't be standing here", "are you sure you're not dizzy?", and "Oh my god, you need to sit down" anemic. So I looked at the numbers..... and sure as hell, I only had enough blood in me to run the average 8 year old. The numbers were scary.

No wonder the doctor said I'd be getting a transfusion once I arrived.

Ok, so over the next three days, I got 4 units of blood. The blood made me feel better, but the 4 units only brought my blood counts half-way to the bottom of normal. I got a ton of blood tests done and I ate at the whim of the doctors...... here's the tally of tests.

A 5 vial blood draw every 8 hours for 3 days.
2 X-rays
One camera down my throat.
One camera up my ass.
2 CTs. One with barium contrast and the other with injected contrast.
One Ultrasound.

From all this, they determined that I had an enlarged spleen and that I could go home until the rest of the blood work came back. I was still in pain, but they gave me a scrip to alleviate the misery. While I was in the hospital, I could have morphine every two hours... now I'm stuck with 2 Vicodin every 4 hours. Whatever. (The enlarged spleen is the cause of the pain, and the enlargement is caused by the spleen over-working to help clear my blood of bad blood cells.)

So I went home and made an appointment to see my PCP ASAP that week. I saw him at about 2:30 pm on Wednesday, September 13.

His response was simple and to-the-point. "Looks like multiple myeloma." It's a cancer of the bone marrow that causes the marrow to produce some red blood cells and a an uncontrolled number of one specific type of white blood cells. Normally, the marrow produces a spectrum of different white blood cells that help fight infection... but in my case, only one type is being produced in unlimited quantities, somewhat at the expense of red blood cells.

So what does that really mean? One, my body won't be able to fight infection very well. Two, I'll have a tendency toward "hypercalcemia" because my bones will be dissolving into my bloodstream. And three, I'm going to have one hell of a roller coaster ride thru the next 12 to 18 months.

For what it's worth, multiple myeloma isn't curable. Without treatment, the prognosis is for me to die within a year. However, there is a rather drastic treatment that can force the cancer into remission for an indefinite period of time.

A series of Mengele-esque steps can be used to acquire "good" stem cells from my bone marrow. Then chemotherapy and radiation therapy can be used to kill all the bone marrow in my body. Then there's more Mengele-esque procedures to get the stem cells back into my bones. At the end of this macabre chain of events, we can HOPE that the stem cells all produce good blood cells and that everything will remain in remission for "a while". Nobody has a clue how long that might be.

Anyway, I'll be keeping people posted thru this site. Good, bad, indifferent, or merely introspection.... it'll be here.