2007, please end.

Back coughing up blood again. And my chest aches like crazy again too. (The pain is more of a problem than the coughing.) Likely culprit is toxicity from that darned Bleomycin.

Bleomycin is used in pretty much all the standard chemo regimens for Hodgkin’s Disease. (I think the only one that excludes Bleo is MOPP, an older regimen that is generally not used anymore as a first-line therapy due to it’s severe side effects and the fact that ABVD has proved superior in terms of cure rates.) My oncologist was right on it and dropped the drug as soon as I had evidence of a problem. (That’s another thing about Bleo. It’s the least important drug of the four in ABVD. Dropping it after a few cycles doesn’t seem to reduce cure rates.) But it still seems to have made a mess out of my lungs.

My oncologist is sending me to see a pulmonologist on the 2nd of January. I don’t think there is much that can be done about the problem, but maybe the pulmonary guy will have some trick up his sleeve. If not, I hope he at least has a good fish tank.

(If you don’t hear from me again before the end of 2007, you can assume I’m hiding under my bed, living in fear of what might still happen in the last few days of 2007.)

Bleo how I hate thee

Oh Bleo how I do hate thee. Let me count the ways.

(An original ode to how much I hate Bleomycin.)

1. You may be causing my fingers turn blue. Even though it has been like five months since I last had you.

2. You made my running bad for weeks.

3. You left “diffuse infilitrate” in my lungs. I still don’t really know what that is, but it is still there and it can’t be good.

4. You made me freak that my Hodge had spread to my lungs since I had a spot of 2.4 SUV in my right lung on my 3-cycle PET. You almost RUINED my PET negative scan.

5. You made me cough up blood. And let me tell you. Blood is IMPOSSIBLE to get out of WHITE running shoes. You even made me freak out some poor lady on the trail who probably assumed I was dying.

6. You made me spend way more time with my oncologist than I’d like. (No offense to my oncologist. But spending time in his office is not MY idea of a good time.)

7. You led me to have to take Vicodin. I don’t even like to take Tylenol.

8. Because of you I had to take Prednisone. I’d rather be boiled in oil than ever take Prednisone again.

9. You made me waste time typing this. I’m stopping short of ten because Bleo, you’re not worth it.

I’m baaaaaaaack.

I ran today. No stopping, no pain killers needed to get through, no quasi-asthma attacks, absolutely everything was perfect. I think I may have finally, officially beaten the Bleo damage.

If you read Lance Armstrong’s book, Bleo is the drug that the doctor told him not to take because of its notorious lung effects. Unfortunately, Bleo is part of all of the commonly used Hodgkin’s Disease chemo regimen, including the one I get, “ABVD.” Actually, Bleo is generally known, however, as the least important drug and I think there is in fact a clinical trial going on right now at UCLA that drops Bleo from the very beginning.

When I developed shortness of breath and a cough, my doctor did what is recommended: he immediately stopped Bleo. However, my lungs and the pain seemed to keep getting worse. I pretty much switched to run / walk because otherwise I was in a lot of pain or would get the equivalent of an asthma attack. Then things just got a lot worse and on top of that I got really depressed ’cause I couldn’t really run.

But now I’m baaaaaaaack.

It was like flipping a switch how fast I got better. Not that I’m complaining. I’m overjoyed.

it only hurts when I breathe

Actually, it now only hurts when I take a deep breath. And, though it might not sound like it, that is a definite improvement.

I had been staying away from reading stuff about Hodgkin’s Disease on the internet; but the problems caused by the Bleomycin have made me go back to internet research. I have been spending most of my time combing through medical journals, attempting to transform myself from a lawyer into an amateur oncologist.

Surprisingly law is actually helpful. In law school, you spend your first few weeks learning how to “brief” a case. Generally, law school is taught this way: the students are told to read some cases and then come prepared to “discuss” them in class. Law students try to distill a case into a synopsis; this is called “briefing” the case. The most important part is sifting through the case to find something called “the holding.” The holding is what the court ruled; everything else is supposed to be something called “dicta.” Dicta lacks the precedent value of the “holding.” Or so law professors say. Anyway, of course, a case often has more than one “holding” depending on how you’re reading the case and what you’re trying to get out of it. (Not following? Don’t worry, its not that important.)

Class then works something like this. The professor will randomly call on someone from the seating chart and have them explain the case. Being on the spot like this is about as much fun as a root canal. The student will usually start by telling the class what the case is about. The professor will lead the discussion with questions. This is what is known as the “Socratic Method.” As you might surmise, most law students probably wish at least at some point that Socrates never existed. Anyway, usually the professor will question the poor, exposed victim … errr, “student on the spot” until they can’t answer the questions anymore; then the professor will either pick on another student or will call on someone with their hand raised (and usually its the same small group of people who always raise their hands).

If you’re a trial attorney, you get to take out your revenge for the terror inflicted upon you in law school on society by being able to do really nasty cross examinations. If you’re an appellate judge, you get to engage in the same sort of questioning of the lawyers that come before you to argue a case. And, if you’re a law professor, of course you get to terrorize the next generation of law students.

I had to step away from the computer and I have completely lost my train of thought. I’d chalk it up to “chemo brain,” but that used to happened just as much before I had chemo. Oh well. Anyway, back to my point (did I have one? I must have. Either way, I have typed too much to go back now.) Reading cases sounds easier than it is. First, there is the jargon. First year law students spend a lot of time just trying to understand the language of law. Second, cases are often poorly written or poorly edited. Cases are generally written by judges (or their law clerks) and like many lawyers, many judges are not good writers. Third, cases are often boring factually, particularly in areas such as contracts. Combine these elements and you get difficult to read material.

I was lucky going into law school; one of my college majors was philosophy. Once you’ve waded through Kant on metaphysics, nothing seems quite so difficult.

The point of that whole long digression was to say that I’ve found reading medical journals is like reading cases — its not easy. I feel like a first year law student again. I have to break out a medical dictionary to understand words like “prevascular spaces,” “hilar adenopathy,” and “pleural effusion.” Law school is obviously no help on understanding words like that, but the training, the basic grounding of how to teach yourself to learn any area of law is helpful. I suppose “thinking like a lawyer” can transfer to just about anything.

Then again, I also feel as though I need to go get a degree in statistics to really understand these journals. Everything boils down to stats. Whether to do radiation or not comes down (for example), it seems, to whether you prefer a 5% better chance of not relapsing with a 5% worse chance of a secondary cancer or other very bad effect, or vice versa. You get to pick your poision! I have trouble knowing how much weight to put on these stats; Hodgkin’s Disease is a relatively rare cancer with only about 7,500 cases a year. The state of medicine changes every day; some of these studies are now years old. Its hard to know what to do.

The one stat I really wanted to find, I haven’t, and that’s what the difference is between 6 cycles of ABVD and 8 cycles of ABVD. Is 8 actually going to prove to have a superior rate of cure? Or is having more of these dangerous drugs that come in biohazard bags and are handled by nurses who wear gloves and gowns and masks pumped into your body just going to prove a few years down the line to cause more secondary cancers, more secondary heart problems? I worry constantly about whether beating the Hodge will turn into a Pyrrhic victory.

But I really think a lot of these questions — whether to do 6 cycles or 8 cycles, radiation or not — are basically, when it is all said and done, dice throws. And that type of uncertainty is a pretty scary thing to think about when you’re talking about your life.

Being a lawyer, I have trouble trusting others judgment.  But I guess in this arena, I have to trust my doc.

For now, I suppose I will just be happy that it only hurts when I take a deep breath.

and the band plays on

Thank you for all the kind words and well wishes.  I read them all and I appreciate them all.  Thank you all for caring.

On Tuesday, I felt like a passenger on the Titanic at around 2:00 in the morning on April 15th: the ship was sinking and it was sinking rapidly and nothing in the world seemed able to help that.  I felt so bad I could barely pick up my head.  Luckily, my oncologist was able to bail out some water and right the ship (at least temporarily) with a much smaller dose of Prednisone (I’m almost tapered off the evil stuff) and enough pain pills to float the Titanic (or bring down a bull elephant).  When the doctors were trying to figure out initally what was wrong with me, I joked about how I thought I needed a real  expert like TV’s Doctor House; ironically, I now own enough pain pills to be Doctor House.  :-)

Anyway, I wanted to let everyone out there reading know I am doing at least somewhat better.  I am definitely better in terms of spirit.  Hopefully, I have “turned the corner” after repeatedly running into it.  (I’ll try not to do THAT again.)

the world just … stops

As regular readers might have gathered from the prolonged silence, I have been having problems. What began a few weeks ago as some mild chest discomfort and a decrease in exercise tolerance has mushroomed into a constant metallic taste of blood in my mouth, severe right-sided chest pain, intermittent shortness of breath, and a generalized ill / malaise feeling. I am having trouble working, heck, I am having trouble just living. Ominously, the symptoms seem to be getting worse with each passing chemo session. And my appetite is gone — even icecream no longer tastes good.

I’m through five cycles of chemo and I’ve never felt so low in my life.

My world has simply stopped. For awhile, I was at least working on my A.P. Hill site — polishing up a new, fresh design. Now I am even too exhausted to do that quiet activity.

I knew there would be a cost to curing the Hodge. I fully expected to lose my hair. To have severe nausea. To experience profound fatigue. But I never expected to have an enlarged heart or such serious lung problems that they affect everyday life as chemo side effects.

Everyone else’s life seems to march on. Friends are getting married, getting new jobs or promotions, having babies. Planning marathons. Writing books. Researching articles. I very much have the sense of being a spectator to life now, not a participant. The world keeps on spinning, but I seem mired in quicksand where the very best I can do everyday is just try and keep my body from slipping too far under. I can make no plans. I can’t engage in my favorite activities anymore. I’ve been doing chemo so long, I forget what its like to feel normal, to be able to make normal plans, to just do normal things.

This is the lowest I think I have ever been, and it frightens me. If Dr. S sticks to his original 8 cycle plan, I have six more treatments to go and I have absolutely no idea how I am going to make it through.

here we go again

Dr. S is no longer content with ordering tests on the standard cancer center prescription form; now he’s ordering tests from departments other than radiology.

Out of the blue his nurse called and told me to go get an echocardiogram. I didn’t even know what an echocardiogram was. I could figure out it has to do with my heart, though. Then on top of that, if that wasn’t enough to start me freaking out, my doctor marked the form for the cardiologist (who he addressed specifically by name) to interpret ASAP.

No one has called me, and the tech just let me go after the test. So I assume I am in no imminent danger of dropping.

Still, I am more than a bit freaked out.

I haven’t had any heart symptoms, other than shortness of breath, which I thought we had attributed to the lungs. I guess he is concerned about damage from the “A” drug. I hope this was just routine and they didn’t see or hear anything (other than my shortness of breath) that led them to ordering this test.

(An echocardiogram is a nothing procedure. Took about 20 minutes. Its basically an ultrasound of your heart. As far as medical tests go, it is cake. You don’t even have to fast at all.)

(And I was, as usual, by far the youngest person in the cardiology waiting area.)

the incredibile traveling infilitrate

I was back getting x-rays again on Friday because my breathing still hasn’t improved. Dr. S is still convinced I have inflammation from Bleomycin drug damage. “It can take awhile to clear up.”

Let me tell you, when you get winded doing mundane and easy tasks like feeding your fish, the phrase “awhile to clear up” isn’t exactly comforting. The good news is that most Bleomycin damage does clear up. Its rarely a lasting problem.

(As you might imagine, the fish don’t seem to care that I get winded walking over to feed them, so long as they still get fed. I have a tankful of aquatic ingrates.)

I have had so many x-rays and scans in the past six months that the radiologist techs all know me by name. “Oh there’s Jenny — the runner girl with Hodgkin’s who totes around the big impressive-looking books on the Civil War.” That’s sad.

When you go for a x-ray or a scan, you are required to bring a prescription form from the doctor who requested it. Having studied the form I always get from my doctor, I can tell you I have had every scan available that he can request via at least the standard prescription form except for a bone scan and a MRI. That’s sadder.

The last time I presented myself for a x-ray, I didn’t even have to go through registration. Everyone has to go through registration (except perhaps for people who come from the emergency room with potentially ruptured organs — I’m sure they are exempt). They know me so well that the registration people know my insurance group number better than their own phone numbers. That’s probably the saddest.

Anyway, the good news on the x-ray was it showed the right upper lobe infilitrate has cleared.

The bad news was now the infilitrate is located in the lower lobe of the right lung.

Just my luck: I have incredible, migrating pus in my chest.

(Yes, I made the mistake of asking “what is infilitrate”? You guessed it — my doctor said he’s pretty sure its mainly pus. Luckily it wasn’t chemo day or he would have probably been wearing my lunch on his tie. That’s just gross.)

By the way, I’m still on the prednisone. I think it is making a difference. I do feel somewhat better. Interestingly, the prednisone seems to have killed my appetite. Everything I have read or been told says prednisone makes you ravenous. Of course, I have to be weird.

(The one positive about prednisone is it is cheap. You can get a whole month’s worth of the stuff for just $4.00. This month’s bill for Emend, by contrast, will be $1,050.00. Add on some generic Zofran at $720.00 and there’s almost $1800.00 for the month of June on just anti-nausea medication alone. Let’s not forget the Neulasta shots at $33,000 or the Arnasep shots at $24,000 either — those are white and red blood cell boosters. Having cancer is more than a little expensive.)

what’s up with my lungs

XR Chest 2V / Accession #52778237

Procedure Reason: Hodgkin’s Disease

Result:

Indication: History of Hodgkin’s Disease, shortness of breath, pleural pain right side

Findings: PA and lateral x-rays of the chest are compared to chest x-ray performed on May 15 of this year, which demonstrated mediastinal and right hilar lymphadenopathy, secondary to Hodgkin’s disease.  The mediastinal and right hilar lymphadenopathy appears to be less prominent, and there is a Mediport in left anterior chest wall, but there is now diffuse infiltrate primarily in the right upper lobe, and perhaps also a portion of the right middle lobe.  There is no right pleural effusion.  The heart is normal in size, and the skeleton of the chest is not remarkable.

Impression:  Residual mediastinal and right hilar lymphadenopathy from Hodgkin’s disease, but the patient has developed a right upper lobe and perhaps right middle lobe infiltrate.

‘Ere. She says she’s not dead!

DEAD PERSON:

I’m not dead!

CART MASTER:

‘Ere. He says he’s not dead!

CUSTOMER:

Yes, he is.

DEAD PERSON:

I’m not!

CART MASTER:

He isn’t?

CUSTOMER:

Well, he will be soon. He’s very ill.

DEAD PERSON:

I’m getting better!

CUSTOMER:

No, you’re not. You’ll be stone dead in a moment.

CART MASTER:

Oh, I can’t take him like that. It’s against regulations.

DEAD PERSON:

I don’t want to go on the cart!

CUSTOMER:

Oh, don’t be such a baby.

CART MASTER:

I can’t take him.

DEAD PERSON:

I feel fine!

CUSTOMER:

Well, do us a favour.

CART MASTER:

I can’t.

CUSTOMER:

Well, can you hang around a couple of minutes? He won’t be long.

CART MASTER:

No, I’ve got to go to the Robinsons’. They’ve lost nine today.

CUSTOMER:

Well, when’s your next round?

CART MASTER:

Thursday.

DEAD PERSON:

I think I’ll go for a walk.

CUSTOMER:

You’re not fooling anyone, you know. Look. Isn’t there something you can do?

DEAD PERSON: [singing]

I feel happy. I feel happy.

[whop]

 

No, I am not dead.  Struggling a lot right now with bleo damaged lungs, yes.   Watching too much Monty Python, yes.  But, dead, no.  Wouldn’t go so far as to start singing “I feel happy, I feel happy,” but I do not want to go on the cart.  At least not yet.

If you don’t hear from me again, you can assume I am out cutting down the mightiest tree in the forest with … yes, you guessed right, a herring.