its just a cold

Saturday night, I had a night sweat.  Just a mild one, not even enough to get my shirt wet.  But night sweats of course are a sign of Hodgkin’s Disease.

So you’ll understand why I was relieved to wake up Sunday morning with a sore throat.  An explanation for a modest spike in temperature.  It’s just a cold.

It is just a cold of course unless you have Bleomycin induced problems in your lungs, then it is not really a cold as much as it is a hack-fest.

Is hack-fest a word?  Firefox didn’t think it was, so I stuck a hyphen in there and got rid of the squiggly red line.

(And I still don’t like the new version of WordPress.)

support Blood Cancer Research at Department of Defense

If you would like to help support blood cancer research — please consider sending a letter to your congressperson urging support of the establishment of a $10 million blood cancer research program at the Department of Defense. The Leukemia and Lymphoma Society has an easy to use internet form you can use, or better yet, you can send a real letter (you know, with a Forever stamp on real paper and all that).

We need better cures for the blood cancers — the blood cancers include the various leukemias, non-Hodgkin’s lymphoma, Hodgkin’s Disease, and myeloma.

Just to give you an example — the current front-line treatment for Hodgkin’s Disease is the ABVD chemotherapy regimen. It only cures about 75% of people, and of the 25% not cured with ABVD or a similar regimen, half of those people can’t be cured with an even more severe chemo regimen and a stem cell transplant. So of the 8,000 people diagnosed with Hodgkin’s Disease every year, 1,000 or so will die. Many more suffer from treatment related side effects from the harshness of the drugs used in ABVD or in the harsher regimens.

Moreover, ABVD was first developed all the way back in the 1970s. In cancer terms, that’s ancient history. We need more up to date and better treatments — and of course not just for Hodgkin’s Disease, but for the other blood cancers as well, most of which have much lower success and cure rates than Hodgkin’s Disease.

Further, because the blood cancers have to be treated systemically (that’s why chemotherapy is used so much in their treatment), drugs developed will probably also benefit other people with a variety of different kinds of cancer.

So, if you will, please consider sending a letter asking your member of Congress to support blood cancer research. I know the blood cancers aren’t as popular as some other kinds of cancer (we don’t have an entire month dedicated to us for example and you won’t find our various colored ribbons adorning products in the store), so we need all the help we can get.

If you do send a letter, you have my sincere thanks.

Ports Revisited

Since I wrote a post a rather tongue in cheek post about ports back in January, I’ve gotten several questions about them. So I have decided to revisit ports and answer a few questions. I’ll TRY to be serious this time.

General Questions about Ports

What is a port?

A port is short for “mediport.” A port is a small device that is implanted under your skin so that medicine may be delivered directly into your blood system. Blood can also be drawn out of the port to be sampled. The port is sometimes also called a venous access catheter.

Why would I want or need a port?

There are a few reasons you might want or need a port.

1) Certain chemotherapy drugs (including those used to treat Hodgkin’s Disease) can cause serious irritation to the veins when they are infused. When the drug is injected through the port rather than into another vein (such as one in your arm), the drug doesn’t directly enter the skin and the likelihood to cause irritation is drastically reduced.

2) Frequent use of the peripheral veins (i.e. those in your arms and hands) can cause scarring and make the veins difficult or impossible to access. The port “saves” a lot of wear and tear on these veins. Most blood draws and treatments can be given through the port.

3) If you are getting frequent treatment or need frequent blood draws, a port (as opposed to another device) allows you to swim, shower, and basically maintain regular activities.

How does it work?

The port is placed completely under the skin, usually on the chest below the collarbones, but other locations can be used as well if desired or necessary. The port forms a small bump under the skin. This raised part is called the port’s reservoir. The reservoir has a plastic membrane or bubble of self-sealing rubber in it called a septum. The septum leads directly into a large vein or artery.

A nurse uses a special needle called a Huber (or “butterfly”) needle to “access” the port. The nurse places the Huber needle through the reservoir and into the septum. This allows access to the large vein. The nurse can then either draw blood, inject medication, or simply leave the needle in place for future use.

What does a port actually look like?

A port looks something like the image to the left.  This is the reservoir part.  Ports come in different sizes.  The standard adult size port is about the size of a quarter.  I have a pediatric port because my mediastinal lymphadenopathy was so large that a standard size port wouldn’t fit.  My port is about the size of a dime.

There is a catheter (the long tube like extension attached to the reservoir) attached to the port that leads from the port itself into a large vein or artery.

How long can you keep a port?

A port can be kept indefinitely.  Reasons to remove a port include problems with it (such as infection) or simply because it isn’t needed anymore.

When not used regularly, a port needs to be occasionally flushed with heparin to keep it functioning properly.

My Experience With the Port

How did they put it in?

My port was placed using just local anesthetic.  It was done in a surgery room in the radiology department.  The surgeon made two incisions — one on the right side of my chest below the collar bone and a second incision in my neck on the same side.  The chest incision was the “pocket” where the port itself was placed.  The second smaller incision was for tunneling the catheter.

I think the standard procedure is to actually put the port on the left.  Mine went on the right side because I had so many masses in my chest.

Did it hurt to put it in?

Not really.  It was more unpleasant than painful.  I had the option for more anesthesia than just local, but to be honest for me the risk of anesthesia would outweigh the mild unpleasantness factor.

The painful part was injecting the lidocaine.  That felt like getting stung over and over by a bee.  Pleasant?  No.  Painful?  A little, but totally doable.

When the surgeon was actually working on the port, it felt like he was tugging at me.  Not painful, just strange.

Does accessing the port hurt?

Accessing the port still requires a needle stick.  It hurts probably just as much as getting an IV in the arm, but the advantage of the port for me is there was only one time that required two sticks.  I have lost count of how many times I’ve needed to be stuck more than once for an IV or blood draw.

What does the scar look like?

I took some pictures of my port to show people what it looks like.  I’ve found most people are really curious and have never seen a port before.  I had no clue what one looked like and had trouble finding any pictures — so hopefully this helps “explain” what a port looks like and gives you more of an idea of what to expect.  (If you’re like me, you like to know EXACTLY what you’re in for.)

First, this is what a port looks like when it’s actually hooked up and accessed.  The dressing is placed over the top of it to keep it clean and dry.  The clear tube coming out of the port is what gets hooked up to the IV machine or to the syringe for chemo.  I took this picture on one of the few days I actually had my port left accessed at home.

(When the port is accessed, you can’t get it wet.  But sometimes I would have to see my oncologist the day before chemo and he’d draw labs … to avoid the second stick the next morning when I got chemo, I’d sometimes leave the port accessed over night.)

This is what my port scar looks like day to day.  The sort of slightly bruised area directly below the scar is where my port reservoir is.  My scar is about 2″ long.  This is what it currently looks like, about one year out of therapy.

Although there was also an incision on my neck, I don’t seem to have any scar there.  That incision was quite small.

Does having a port effect your daily life?

I run with my port, I shower … I usually forget it’s there except for when a seat belt occasionally rubs up against it or something.  I like the port because my veins aren’t very good and the port saves a lot of needle sticks.

Anyway, I hope this helps!

bad days aren’t allowed

Coming off three excellent runs in a row, today I ran into the proverbial wall.  Runner’s like to talk about “The Wall” — a mythical, legendary beast, a spot where the flesh and spirit become weak, where all you want to do is curl up into a ball and go to sleep.  Upon meeting the wall, your spirit, motivation, and will all drip out of you and form a puddle of discouragement at your feet.

Usually you meet The Wall in a marathon; today I met it running considerably shorter than that.  I was out for a 14-mile run.  The day was fairly raw (mid-30s), quite windy (SSE 19MPH), and it was overcast.  Not ideal running conditions, but certainly not terrible ones either.

It wasn’t a good run from the get-go.  I woke up and felt tired.  My stomach ached a little.  And I just didn’t really feel all that much like running.  Still I put on my shoes and went out the door.

About half way through, my stomach started cramping and I felt kind of short of breath.

The shortness of breath thing always concerns me.  I truly think my first symptom of Hodgkin’s Disease was a decrease in exercise tolerance.  So even the slightest problems with my runs makes me get extremely nervous, even though I know rationally that there will always be bad days, even for healthy people.  But for me …  Bad days aren’t allowed anymore.

I finished the run, but I felt mad for stopping a few times because I felt tired and a little winded.  I’ve spent the entire day trying to convince myself that I just had a bad day, that I’m fine, that I’ll be running normally tomorrow.  After all, I had three excellent runs prior to this bad one.

Fingers crossed for a good run tomorrow.

reflections on a year with cancer

Over on my homepage, I wrote an essay, Reflections on a Year Running Through Cancer. It is a rather raw, but incredibly honest and truthful look at chemotherapy, mainly from a runner’s perspective.

Some of you have been here reading along loyally the whole time, some of you may be making your first visit here today to my blog. I am leaving my Hodgkin’s Disease posts in-tact here as a diary of my experience. However, if you would like to read my reasoned and thought out reflections on the whole cancer experience from diagnosis to remission, feel free to read the essay.

What it’s ACTUALLY like to GET Chemotherapy

I occasionally hear from someone newly diagnosed with Hodgkin’s Disease who is about to start ABVD chemotherapy. ¹ Unfortunately, I heard from THREE people yesterday who are getting ready to start — apparently my port post was popular and apparently Dr. Hodgkin’s horrible disease is still alive and well. Grrrrrr.

If you’re like me, you probably don’t know much at all about how chemotherapy is given or what to expect.  Or, perhaps you have this nightmarish view of what chemotherapy is going to be like.  So let’s start there.  Remember, I’m just like you are — a normal person faced with Hodgkin’s Disease.  I’ve got no reason to lie to you or sugar coat things and I’m promising you — I’m being honest about MY experience.  One thing you MUST keep in mind, however, is that EVERYONE reacts a little bit differently to even the exact same chemo.  So my experience is not going to be your experience and visa versa.

Also, I can’t guarantee of course this is exactly what will happen to you.  Each treatment center or hospital² is a little bit different, so your mileage may vary.

OK, that said, what can I expect when I go get ABVD chemotherapy?

Let’s start with a few preliminary considerations.

1.  It’s not going to be as bad as you think it is going to be.

You’ve seen those scenes in movies or TV shows where someone gets chemo and all sorts of terrible things happen — they waste away like a prisoner at Andersonville during the Civil War, they spend all their time with their head in a toilet throwing up non-stop, their hair all falls out, they are so tired they can’t get out of bed to even care for themselves.

Here’s the good news: That’s almost definitely NOT going to be what happens with ABVD!  ABVD is a moderate course of chemotherapy — what’s actually bad about ABVD is how LONG a course it is.

What you can expect from ABVD:

• You probably will lose your hair.  (Probably around the second or third cycle.)  Sorry.  =(  This is one side effect they haven’t made much progress on.  HOWEVER, not everyone loses their hair, so you may want to wait and see before you make any drastic decisions.  My hair thinned considerably, but I still had enough at the end to tie back into a ponytail and I did the maximum amount of ABVD.  (For example, here’s me at Gettysburg between cycles six and seven.)
• You will probably be nauseated, at least sometimes and at least a little.  The “D” drug in ABVD is highly emetogenic, so most people do experience SOME nausea.  People have differing amounts, however.  I seemed to get more than my fair share of nausea, but I never actually threw up.  There are MANY excellent anti-nausea medications out there — they may not prevent every twinge, but if used properly you should DEFINITELY not be spending your days throwing up.
• You will be tired.  However, although ABVD causes fatigue, MANY people are able to work at least part-time through it, some even full-time.  That should give you an idea about the fatigue.  I ran and worked part-time and traveled through my 8-month course.

ABVD can cause some other side effects, too.  The notable ones I experienced included:

• Occasional mouth sores.  Using the mouthwash Biotene helped greatly in this regard.
• Hiccups.
• Lung problems from the Bleomycin.  Lung problems are not uncommon, but mine were more severe than the majority of people’s.  Please not that not everyone will even have even a mild problem.  Also, when lung problems do happen, they are usually a) caught quickly by your oncologist and b) reversible.
• Raynaud’s Phenomenon, a fairly uncommon side effect (my oncologist appeared to immediately know what it was, but seemed surprised I had it).

2.  Don’t be afraid to ask for help.

If you’re suffering a lot with a side effect, don’t be shy about speaking up to your oncologist or nurse about it.  Especially in the case of side effects like nausea, there are MULTIPLE drugs that can be tried.  So don’t give up.

3.  How did I feel after ABVD?

My experience was this.  I’d get treated on Friday (say Friday the 1st).  I would be sickest that Friday with a headache, nausea, and a generally ill feeling — think a bad case of the stomach flu.  I felt best if I was laying down.  Seriously — when you feel that terrible, your best bet is to try and sleep through it.  Saturday morning was bad, but by Saturday night I often could at least pick at dinner.  Sunday was an off and on again bad day, but I could usually eat an ok amount at dinner.  By Monday morning, I would feel well enough to run lightly and if forced, could work a half day.  By Wednesday I was back out running more fully and could put in a full day of work if needed.  I was normal again until the next treatment, which would be on Friday the 15th.

4.  Frustration?

Most people seem to go through a period — often midway through treatment — where they get really frustrated and depressed.   This is entirely normal, and it does pass, even though it is horrible to go through.  Just focus on today.  If you think about how long you have to go, you’ll just drive yourself crazy.

OK, now … how do they actually give ABVD?

I got ABVD sixteen times.  The first time was at the hospital because I had SVC syndrome, but the experience was almost identical to the other fifteen times as an outpatient.  Here’s what to expect on chemo day:

1.  Seeing your oncologist.

Every other treatment (so every four weeks), I had a short office visit with my oncologist where he would feel lymph nodes, go over how he thought treatment was progressing, ask about side effects and try to address them, or discuss any test results.  It was usually about a 10-15 minute appointment.

2.  Accessing the port or starting an IV.

If you have a mediport, they will access it and hook it up.  (If you want to know more about ports, check out my post about ports.) Otherwise, they will start a peripheral line in your arm, hand, wherever they can located a good vein. They will draw some blood and check your counts. This is the threshold that determines whether you can get chemo; too low of counts, and they can’t treat you.³ They will look at:

• Your RBCs, to check for anemia, including your hemoglobin. If you are low, your doctor MAY withhold treatment, mine never did and I was extremely anemic in the beginning.
• Your platelets. I had some trouble with low platelets from time to time, but Dr. S always decided to go forth anyway. How low you are determines whether you go forward or not, plus this is part art and depends on your oncologist.
• Your WBCs. They will especially focus most not on the total but on your ANC. What is ANC? ANC refers to the percentage of neutrophils (white blood cells that fight infection) and cells that will become neutrophils multiplied by the white blood count (WBC). It breaks down as follows:
  • ANC below 2000 is considered to be neutropenia
  • ANC between 1000-1500 fairly low risk of infection. Chemotherapy will usually be given in this range, but not below it.
  • ANC between 500-1000 - moderate risk of infection
  • ANC below 500 - severe neutropenia - high risk of infection
• They will also do a basic check of your electrolytes and kidney and liver functions before they decide to go forward with treatment.

Getting your counts depends on the speed of the lab; in general, I would have mine in fifteen or twenty minutes.

(If you’re too low, you’ll likely just go home and your oncologist will either wait for your counts to come up or he/she will start treating you with WBC boosters such as Neulasta. I never had a chemo delayed.)

Tip: If you’re nervous about them accessing the port, try not to be.  It really does hurt less than a IV and it will save your veins in the long run.

3.  They get your weight, the oncologist writes the order, and the pharmacy makes it up.

There’s a formula based on weight and height used to calculate your chemo dosage — my oncologist weighed me each time and calculated the dose from there.  The pharmacy then custom mixes your chemotherapy drugs.  It used to take about 30 to 45 minutes to fill the order.

4.  Pre-Meds and Fluids.

Because ABVD causes nausea and vomiting, your doctor SHOULD pre-treat you for nausea.  If he isn’t, then I’d want to know exactly why.  The “D” drug causes nausea and vomiting in over 90% of those who get it.  Thus pre-treatment should be mandatory in my opinion.

It usually takes about thirty minutes to give your anti-nausea drugs.  These are given via an IV drip.  Some common ones include:

• Zofran
• Anzamet
• Aloxi
• Decadron (a steroid — usually combined with one of the other drugs listed.)
• Kytril

I used to get Emend (a pill), then Aloxi and Decadron via IV.  When I developed anticipatory nausea, I also would get Ativan added to the mixture.

A tip! Emend costs like $360.00 for three pills.  Make sure your blood counts are ok and you’re getting treated that day before you take it.

Along with the pre-treatment drugs you’ll likely be getting some fluids. The pre-treatment drugs shouldn’t hurt, burn, or cause any symptoms.  They also don’t taste bad or anything like that.

Tip Two: Make sure your oncologist has given you a prescription for nausea.  Anti-nausea drugs work best when used BEFORE you feel sick.  The pre-treatment drugs should last about 12 hours, but after that you will take pills.  I recommend taking it around the clock, rather than waiting for nausea to develop.

Tip Three: It’s helpful to have two anti-nausea drugs.  Take one around the clock, and keep the other as a reserve for “breakthrough nausea” — nausea that occurs despite the other drug.  And again, treat at the first twinge!  Nausea is easier to control than it is to treat.

I had a lot of nausea, so that’s why so many tips on this part.  it’s quite likely you won’t have as much as I had, but I think better safe than sorry.

5. The Real Deal Begins: Adriamycin

The red drug, Adriamycin, is usually given first. It comes out in a large syringe (I used to call it a turkey baster). To prevent mouth sores, you can suck on ice or Popsicles while getting it. The nurse will “push it” — that means slowly inject it into your IV line. Warning that it is REALLY RED and it will usually turn your urine RED too, so don’t freak out when / if it happens.  (Since I developed anticipatory nausea, I’d have them cover up the syringe, but even now writing this I feel a little sick.)

Of the drugs, this one hits the Hodge the hardest.  A lot of cancers get treated with Adriamycin, and it’s sometimes called “The Red Devil.”

Adriamycin has a taste, and if you happen to be one of the people who can taste it, you’ll quickly note that it’s a bad taste, so you may want to suck on hard candy in addition to the popsicle.

6. Bleomycin

“Bleo” comes out in a smaller turkey baster and it is pushed the same way as Adriamycin. It is a clear drug. Nothing worth noting about it, other than the first time you get chemo, they will give you a test dose and wait to see if you have a reaction. Reactions are EXTREMELY rare, so this is a better safe than sorry safeguard.  That test dose does add some time to your first chemo that you won’t have at the later sessions, however.

7. Vinblasine

Vinblasine is basically identical to Bleo, except they don’t do a test dose and I think I recall the syringe was a touch smaller. Sometimes my chemo nurses did not push Vinblastine slowly, but instead gave it rapidly through the IV.  It didn’t seem to matter either way.

8. Dacarbazine

Dacarbazine is given as an IV drip, over approximately an hour or so. It comes out in a brown bag usually to protect it from sunlight. By the way, if you end up sick to your stomach, you can blame this drug. It’s highly emetogenic. (Most people do great with the anti-nausea drugs, and that’s why they pre-treat you.)

9.  You’re done!

Once you’ve gotten all your drugs, they will flush your port (if you have one), unhook you, and you’re usually good to go.

And that is pretty much all there is to it to ABVD chemo. It takes about 3 hours from start to finish.

Some other stuff of note:

• I never felt anything when I got the drugs, other than nausea, but that’s REALLY rare, and caused by an anticipatory reaction I developed. They never hurt or burned, though if you get an IV, I understand the spot can get sore.
• You can usually get up and walk around with your IV, just not while they are pushing your drugs.
• You can eat, drink, etc as you feel like you want to … Staying well-hydrated is very helpful.
• You can usually bring a friend, chat on the phone, play on a laptop, watch TV, etc.
• Chemo is usually given in recliner chairs — mine had a TV attached.

If you have any questions, leave me a comment and I’ll try to get back to you ASAP.  Also, if you think there’s something else that would be helpful to add to this post for future patients, please let me know that too!

1. ABVD is the “gold standard” for Hodgkin’s, but there are other regimens employed too, included BEACOPP and Stanford V, especially in advanced disease. [↩]
2. ABVD is almost always given as an outpatient, but I had my first treatment in the hospital due to SVC syndrome. [↩]
3. Low counts aren’t real likely during your very first chemo. [↩]

ports

Warning, am bored, am still a little sick, have digital camera, need to entertain self.

This is a sort of tongue in cheek look at ports.  If you’d like to read a more serious post describing ports, please visit Ports Revisited.  If you keep reading here, you’re going to be subjected to my own unique brand of gallows humor.  Just a warning.

This post is solely Hodgkin’s Disease / cancer related; if you want to skip down to the Civil War stuff, go to the Civil War posts and enjoy the second post about ……. the history of Hodgkin’s Disease. haha. Actually Hodgkin was alive during the Civil War, there’s a tenuous connection. Ok. If you’re still here, you’re reading a post about cancer ……

Since I’m bored, I decided to write about my port.

No, unfortunately I’m not talking about Admiralty law. The law of the high seas. You know. Arrrrgggggghhhhhh. Pirates! Didn’t you read the whole “I’m talking about cancer” disclaimer above? Don’t you know I make it a practice not to talk about the practice of law even though I’m a lawyer? I’m talking about a mediport for chemotherapy. (Sorry about so many cancer-related posts this week. These things run in streaks, you know?)

People keep asking me about my port — mainly people starting or going through chemotherapy, ¹ but also people who are just curious. People seem to be more curious about the port than anything else (I even find lots of people searching about them arrive here through random searches of Google or Yahoo). So … in the interest of hopefully cutting down on how many emails I get about ports (ok, I’m kidding, I love hearing from readers even if it is about ports) AND BECAUSE I LIKE HELPING PEOPLE :) … Here’s what I can tell you. As always, your mileage may vary.

What does it look like?

All right, for the morbidly curious or for those who really want to know because they are considering getting one … I got tired of the questions, mustered up my courage, and took a picture of Victor. By the way, I did name my port. Victor. As in I love the smell of napalm in the morning … Smells like … VICTORY. (Or the death of thousands of Reed-Sternberg cells. Same difference.)

(Any doubt that this is my port can be dispelled by noting the copy of “Gray Fox” among other Civil War titles in the background on the shelves.)

This is what the port looks like all hooked up for chemo or any other infusion. A port can be used not only to deliver chemo, but for routine blood draws and even to just give you nice drugs like fluids. When it is not hooked up, it looks like a little bump underneath the skin about the size of a nickel with a scar above it. That’s it.

(Generally, your port is only hooked up like this for an infusion or for a test. I had to have a PET scan following some blood work, and to avoid two needle sticks, I told them to leave the port in — which is why I have it accessed at home.)

Here is a close up of my chest port scar. It’s located about an inch below my collarbone on the left side of my chest (usually ports go on the right; I had too much supraclavicular and chest lymphadenopathy going on in the right side).

OK, now let me let you in on some secrets about the port. The stuff your doctors may or may not tell you but I think are important from a patient’s perspective.

(You may not want to continue if you don’t like gallows humor. I like gallows humor very much. And if I’m not employing it, chances are I’m REALLY sick, so take it as a good sign, not a bad.)

1. Get a power port!

Not just because it sounds so much cooler when you strut around chemo, pulling your IV pole behind you …. “My port’s a POWER PORT.” Actually you want a power port if possible because they are really much more useful. This is the type of power port the Cleveland Clinic gave me.

A power port comes in handy because it can be used for CT scans. CT scans use a special pump to inject the dye that can destroy or damage a regular port. A power port is specially designed to be used for CT scans.

2. They make two incisions.

Getting a port is usually an out-patient surgery. A general surgeon or a vascular surgeon can put it in (mine was done by a vascular surgeon). They will give you drugs to go to sleep or you can go hardcore with just local anesthesia and bug the surgeon like I did. (My surgeon was so cool.) The surgery took about half an hour.

The surgeon makes an incision to put the port in on your chest, then he makes a smaller incision near the neck to tunnel the catheter. (The tunneling felt FREAKY) I have a scar on my chest but no scar in my neck, though if you look very carefully and know what to look for, you can see the line running up in my neck vein.

Pain wise … I was awake. The liodocaine (the local anesthetic) burns and stings. Other than that, you mainly feel like someone is tugging and pulling at you. Scale of 1-10 with 10 being please kill me now, the port surgery was about a 2-3.

Visibly, unless you’re showing off your chest, no one should know you have a port unless they know something about them and then who cares? My scar is hidden when I wear a sports bra, so even then you can’t see it. Good job, Doc. :)

3. Needles?

Yeah. There are still needles. They use a special type of needle to access a port. ² You do get stabbed, except there is no need to hunt for a vein and rather than getting stuck in your arm, you get stuck in your chest. By the way, stabbing a port is called “accessing it.” Nice euphemism, but it just means stabbing.

Your chest has less nerve endings, so the stabbing isn’t close to as bad, especially since they almost never ever miss. Plus you can put cream on it to numb it before you go get stabbed if you really are afraid of needles (I never used the cream so I dunno how well it works). Also, there is no cumulative damage to your arm, hand, or other veins.

4. Don’t expect everyone to know what to do with a port.

Unfortunately while any good cancer or chemotherapy center will know what to do with a port, don’t be surprised if nurses or techs in other areas don’t know how to access it. Don’t be surprised if you even hear “what’s a port” and be sure to warn the x-ray people that it’s there so they don’t flip out about the weird thing in your chest.

Also, it’s a good idea to carry your port card (basically just a card that says you have a mediport) because it can set off medal detectors, though usually only REALLY sensitive ones (I’ve had no problem at the airport with mine).

5. But using it at least for chemo will save your veins …

Certain chemo drugs, including many used to treat Hodgkin’s, can literally burn you inside out. And if the IV leaks, you’ll end up with a painful problem. The port saves you a lot of that problem with ruining your veins, plus if your doctor is like mine, he will love to get your blood as often as possible. (Hematologist is medical speak for vampire. I’m positive.)

6. I forget it’s there. But you do gotta keep it flushed.

Seriously, I am a little leery about touching the spot, but most of the time I don’t even think about my port. You can’t really feel it or anything like that.

When you’re out of treatment, you have to get your port accessed and flushed every six weeks. It takes like five minutes, but it something to consider in keeping your port long-term. I’m kind of attached to mine (cue laugh track), but Dr. S is too conservative to let me take it out short of 2 years anyway.

Doctors seem to have different “rules” on when you can have your port removed. My doctor insists on remission for two years. Your mileage may vary.

7. Badge of Honor

When I see someone with a port scar (sometimes they are higher on the chest than mine for example or the scar is bigger for some reason) or pick up on the neck catheter, I think ah there goes another chemo warrior, a survivor like me. Seriously.

8. Sometimes your doc will attack your arms anyway.

Sometimes for various reasons, you doctor will have to get blood drawn peripherally anyway. (For example, if there’s something wrong with the port or he suspects an infection in it … or for certain tests, or because you said something mean and he’s mad at you and trying to make you life miserable … you do know I’m kidding about that last one right?).

9. It doesn’t save you from shots.

Yup, Neulasta (white cell booster) and Arnasep (red cell booster) seem to be given as shots, so you’re still getting stabbed for those. The port just reduces the stabbings somewhat. Basically anything you can use an IV for, the port can be used for.
10. Having a port can be fun.

A confession. One time I was goofing around with one of my local running friends and we told the rest of a group (who didn’t know I had cancer) that I had been abducted by aliens. When they guffawed, I showed them the scar and said that was the tracking device. You should have watched their jaws drop. (OK, so you guys all know I have a good sense of gallows humor! This proves it!)

More information on ports: Ports Revisited.

1. I wish no one ever had to go through chemotherapy again ever. [↩]
2. It’s called a Huber Needle, if you really want to know. [↩]

A Brief History of Mr. Hodgkin and His Horrible Disease

(I am sticking this in the Civil War category, although it has almost nothing to do with the Civil War. It’s very much a history related post, however.)

There seems to be something a bit ironic about a student of history being diagnosed with a type of cancer with as long and as interesting a history as Hodgkin’s Disease. Being a history buff afflicted with this particular malignancy, I thought it might be interesting to give … drum roll … a brief history of both Dr. Hodgkin and his horrible disease.

(You know, my first interest was medical school — maybe you’ve seen my website on Civil War medicine. But desire and interest and actual talent are different things, so I ended up a lawyer. Still anatomy in particular fascinates me so I enjoyed flipping through some of the really disgusting pictures I found on the web that Hodgkin included in his books.)

Dr. Thomas Hodgkin

Hodgkin’s Disease is one of the best known medical eponyms. The fellow who’s name got attached to this relatively rare¹ cancer especially known for attacking younger people² was named Thomas Hodgkin. Hodgkin was born in to a Quaker family in Middlesex, England on August 17, 1798. In 1819, he entered medical school at St. Thomas’s and Guy’s Medical School (affiliated today with King’s College in London). In 1823, he earned his M.D. Two years later, Dr. Hodgkin was appointed lecturer in morbid anatomy and curator of the Pathology Museum at Guy’s Hospital Medical School.

Physically, Hodgkin was dark haired, with a slight and wiry build. He had a hot temper, but was greatly appreciated as a lecturer. Hodgkin’s passion seems to have been pathology. In 1829, Hodgkin published a work that became a classic in pathology, The Morbid Anatomy of Serous and Mucous Membranes. This work focused on unexpected intra-thoracic and intra-abdominal tumors and how cancer spread.

In 1832, Dr. Hodgkin described the disease that now bears his name in a paper entitled On Some Morbid Appearances of the Absorbent Glands and Spleen. The paper was published in the journal of the Medical and Chirurgical Society in London. The disease would be rediscovered in 1865 — right as the Civil War ended — by Dr. Samuel Wilks who recognized Hodgkin’s work and named the disease after him in a paper entitled Cases of enlargement of the lymphatic glands and spleen, (or, Hodgkin’s disease) with remarks.

Hodgkin was one of the early advocates of preventive medicine, publishing On the Means of Promoting and Preserving Health in 1841.

Although the most brilliant pathologist of his day, Hodgkin was an abject failure in business. After staying up all night caring for a very rich patient, Hodgkin received a blank check for his work. He filled in the blank with 10 pounds, then added insult to injury by saying that the patient didn’t seem to be able to afford more. Many of his friends were reluctant to ask him to consult on their cases because he would refuse to charge them.

Hodgkin was a social progressive. He opposed slavery, advocated for reforms in medical education, and founded the the British and Foreign Aborigines Protection Society. His liberal views along with his hot temper made him enemies in the medical profession.

Dr. Hodgkin died of a terrible illness sadly familiar to many Civil War soldiers — dysentery — on April 5, 1866 in Jaffa, Palestine. His grave reads: “Here rests the body of Thomas Hodgkin M.D. of Bedford Square, London. A man distinguished alike for scientific attainments, medical skills and self-sacrificing philanthropy.”

Hodgkin’s Disease - The Early Years

Dr. Hodgkin was the first to note that Hodgkin’s Disease seemed to form in the intra-thoracic region and would spread through contiguous lymph node chains. He also noted that involvement of the spleen seemed a symptom of advanced disease.

Dr. Hodgkin also recognized that the “father of microscopical anatomy,” Marcelle Malpighi published the first actual recorded description of Hodgkin’s disease in his paper De viscerum structuru exercitatio anatomica in the year 1666. Hodgkin’s Disease was not the first cancer discovered,³ but it was among the first and one of the first to be accurately described.

Hodgkin only examined his disease grossly; he did not undertake to use the primitive microscopes of the day to explore the tissue further. As previously mentioned, a year before his death, Dr. Wilks assigned Hodgkin’s name to the disease. Hodgkin’s Disease proved to be interesting because it was difficult to classify — was it an infection? a cancer? an inflammatory process? The disease additionally attracted much attention and infamy due to it’s frequency in young adults.

Several pathologists who followed Hodgkin and Wilks did examine biopsies of Hodgkin’s Disease under the microscope, but it was Dorthy Reed (1874-1964), a fellow at Johns Hopkins, who first classified the unusual giant cells unique to Hodgkin’s Disease. Dr. Reed failed to recognize that they represented a neoplasm, however, thinking they were inflammatory. The unique giant cells that make up Hodgkin’s Disease are today known as Reed-Sternberg cells (Dr. Carl Sternberg (1872-1935) had also done work describing them independently in Germany in 1898).

Pathologists were eventually able to tie the giant Reed-Sternberg cells⁴ to the malignant process. Hodgkin’s Disease is a cancer,⁵ sometimes called Hodgkin’s Lymphoma. ⁶

Reed-Sternberg cells are interesting because they only make up 1 to 2% of a Hodgkin’s Disease tumor. Hodgkin’s Disease is the only malignancy where the size of the masses aren’t a result of the number of cancerous cells. ⁷ (This is one reason why there is so much inflammation with Hodgkin’s Disease and often scar tissue).

In 1925, Hodgkin’s Disease, Non-Hodgkin’s Lymphoma, and the leukemias were finally differentiated officially as different diseases.

Hodgkin’s Disease: The First Curable Cancer

Although early pathologists did not recognize that Hodgkin’s Disease was a malignancy, it’s ability to kill was well known. Ninety percent of people with Hodgkin’s Disease would die within three years time; almost all would die within five years.

Through the early 20th century, doctors experimented with using radiation to try and control Hodgkin’s Disease. They had limited success. They began to then experiment with nitrogen mustard. Now my military readers are probably asking mustard? Isn’t that the stuff that was so terrible and killed so many in WWI? Yes. Ironically, the development of the nitrogen mustard drug used in Hodgkin’s disease stemmed from the use of mustard compounds during World War I and from a terrible explosion during World War II in Bari, Italy that exposed servicemen to toxic effects. The Bari incident showed that nitrogen mustard could cause suppression of the bone marrow and of the lymphatic system. By the mid-1940s, doctors were beginning to control Hodgkin’s Disease and shrink the tumors.

The big breakthrough came in the middle 1960s. By 1964, doctors had come up with a combination chemotherapy regimen that utilized the mustard known as MOPP. MOPP consists of cyclophosphamide, vincristine, methotrexate, and prednisone.

The current staging system was also set up by the mid-1960s. The Ann Arbor Staging for Lymphomas also applies to Hodgkin’s Disease. Stage is closely associated with prognosis. The stages for lymphoma are:

• Stage I indicates that the cancer is located in a single region, usually one lymph node and the surrounding area. Stage I often will not have outward symptoms.
• Stage II indicates that the cancer is located in two separate regions, an affected lymph node or organ within the lymphatic system and a second affected area, and that both affected areas are confined to one side of the diaphragm - that is, both are above the diaphragm, or both are below the diaphragm.
• Stage III indicates that the cancer has spread to both sides of the diaphragm, including one organ or area near the lymph nodes or the spleen.
• Stage IV indicates diffuse or disseminated involvement of one or more extralymphatic organs, including any involvement of the liver, bone marrow, or nodular involvement of the lungs.

To this letters are often appended:

• A or B: the absence of constitutional (B-type) symptoms is denoted by adding an “A” to the stage; the presence is denoted by adding a “B” to the stage. The B symptoms include night sweats, fevers, and weight loss of 10% of more. Many symptoms associated with Hodgkin’s Disease (itching, pain on drinking alcohol) are not official B-symptoms.
• E: is used if the disease is “extranodal” or has spread from lymph nodes to adjacent tissue.
• X: is used if the largest deposit is >10 cm large (”bulky disease”), or whether the mediastinum is wider than 1/3 of the chest on x-ray.
• S: is used if the disease has spread to the spleen.

(So if you assigned your author all the different letters that applied to her case, she would have Stage III-AEXS Hodgkin’s Disease.)

By the way there are also four known sub-types of Classical Hodgkin’s Disease:

• lymphocyte predominance (approximately 5% of cases)
• nodular sclerosis (approximately 70%)
• mixed cellularity (approximately 20%)
• lymphocyte depletion (5%)

(Your author had the NS sub-type.)

By 1967, the results from MOPP were coming in and they were astounding: an 81% complete remission rate. In 1968, Adriamycin ⁸ became available for the first-time and in 1972 Dacarbazine ⁹ was approved for use. Because MOPP caused severe side effects (including sterility and severe suppression of the bone marrow leading to secondary leukemias), in 1972-73 a group from Italy led by Bonadonna came up with the current “gold standard” for Hodgkin’s Disease: ABVD Chemotherapy. ABVD combined a vinca-alkaloid known as Vinblastine ¹⁰ (similar to Vincristine in MOPP), an anti-tumor antibiotic called Bleomycin, and Adriamycin, and Dacarbazine. In head to head trials, ABVD proved not only less toxic, but also provided superior rates of cure.

The last major step in treating Hodgkin’s Disease came in 1992 when a German group came up with a new regimen for highest risk patients known as BEACOPP. Along with the Stanford V regimen (a combination chemotherapy and radiation regimen), these two treatments are now sometimes used in place of ABVD in advanced disease.

With modern chemotherapy, sometimes combined with radiation to areas of disease, about 80% of patients with Hodgkin’s Disease can today be cured.

As you would expect, Hodgkin’s Disease is still an evolving field, especially in terms of treating patients who have relapsed disease. Much of the work currently involves effective treatments for Hodgkin’s Disease that reoccurs despite first-line therapies. Also, there has been focus on trying to predict which patients are most likely to relapse. The use of radiation remains an issue as does attempting to lessen the toxicities from chemotherapy.

A Few Famous Hodgkin’s Disease Survivors You’ve Probably heard of

• Paul Allen
• Mario Lemieux
• Arlen Specter
• and a host of wonderful people you’ve never heard of, but are just as important, and just as valuable

So there you have it — a brief history of Dr. Hodgkin and his disease.¹¹

1. The incidence of Hodgkin’s Disease is about 3 cases per 100,000 people per year, and it accounts for less than 1 percent of all cases of cancer in the United States. The American Cancer Society states: “The American Cancer Society estimates that in 2007 there will be about 8,190 new cases of Hodgkin disease in this country. And about 1,070 people will die of the disease. Because of better treatment, death rates have fallen by more than 60% since the early 1970s.” [↩]
2. Hodgkin’s has a biomodal distribution; it is most often seen in people aged 15 to 34 or over the age of 60. In young adults, it is the most common kind of cancer. [↩]
3. Cancer is an ancient disease. Bone remains of mummies have revealed growths suggestive of bone cancer. The Edwin Smith Papyrus found in Egypt that dates back to 1600 BC actually describes 8 cases of tumors or ulcers of the breast that were treated by cauterization, with a tool called “the fire drill.” The writing explains that there was, “no treatment.” [↩]
4. R-S cells are the major thing that differentiate Hodgkin’s Disease from non-Hodgkin’s Lymphoma. The R-S cell is very large and often has more than one large nuclei. [↩]
5. Hippocrates used the terms carcinos and carcinoma to describe non-ulcer forming and ulcer-forming tumors. He used the word that referred to a crab because crab the disease often presented with finger-like spreading projections from a cancer called to mind the shape of a crab. [↩]
6. A lymphoma is a cancer of the lymphatic system, a set of interconnected organs and tissues that helps the body fight diseases and infections. There are two major types, the much more common Non-Hodgkin’s Lymphomas and Hodgkin’s Disease. Connected along the thin network of vessels of the lymph system are groups of small, bean shaped and sized organs called lymph nodes. Lymph nodes are found in the neck, chest, armpits, abdomen, and groin. The lymphatic system also includes the tonsils, thymus, spleen, and bone marrow. [↩]
7. Most of the Hodgkin’s Disease mass consists of benign inflammatory cells including small T lymphocytes, histiocytes, plasma cells, eosinophils, and neutrophils. The inflammation is produced by cytokines which are in turn produced by the tumor cells. [↩]
8. Adriamycin is the red drug. It is used for many different kinds of cancers. It’s generic name is doxorubicin. Adriamycin is in the class of chemo drugs known as Anthracyclines. [↩]
9. Dacarbazine is also known by it’s brand name, DTIC. Dacarbazine is an alkylating antineoplastic agent. It is used mainly now for Hodgkin’s Disease and for certain kinds of melanoma. [↩]
10. Vinblastine is a mitotic inhibitor. It derives from the perwinkle plant. [↩]
11. The World Health Organization in 2001 tried to officially name Hodgkin’s Disease, Hodgkin’s Lymphoma. Personally, I think Hodgkin’s Disease sounds better and my doc uses the term “Disease”, so I am going to keep referring to it as Hodgkin’s Disease. [↩]

grateful

As a cancer patient, I am grateful that kind, smart, funny, caring people choose to become oncologists, chemo nurses, or to otherwise work in the field of oncology. Yes, this is their job, yes they are compensated for the work that they do. But I’m still grateful that my medical team chose one of the most difficult (if not the most difficult) areas of medicine — intellectually and emotionally — in which to specialize. If you want to make a lot of money or just earn prestige, there are a lot easier ways to go about it than working in a rigorous field like oncology. I don’t know how people can work in oncology, but I am grateful there are so many good people in the field.

That’s all. :)

beautiful, biohazardous, Hodge-less Jenny!

Same picture as a few days ago. Except it is with the deepest sense of happiness and gratitude that I can tell you that I look healthy because I basically am healthy!

Jenny lives, Jenny is only slightly more biohazardous than she was when you last saw her, ¹ Jenny thrives!

OK, maybe not quite. My PET scan lit up in only one spot ² — my vocal cords and larynx. In other words …. all of this worry was over just a stinking oddly presenting upper respiratory infection.

Congratulations, Jenny, you are the proud owner of a bad case of laryngitis. You don’t need a stem cell transplant that would have a low chance of success in someone like you with messed up lungs anyway, and you’re not going to imminently die from some other secondary form of cancer. Right now you’re clean.

Irony. After days and days of not feeling all that sick, I woke up this morning with a very sore throat (can barely swallow) and I can’t talk. I still have a fever and I still feel sick to my stomach. And my side mysteriously still hurts over my liver.

I’ve never been happy to have an upper respiratory infection before. I want to get my appetite back and shake this fever so I can celebrate — go for a long run and eat a pint of Chunky Monkey ice cream!

While not a religious person, I cannot help but think that a Hand Mightier Than Armies played a role. (That and all the miles run and ice cream eaten in my honor by my running friends, and of course the good wishes from my other friends. Perhaps when we all pull together for something, we can sometimes alter the cosmic fabric just enough to matter.)

Score one for the good guys!

1. PET scans are a nuclear medicine test — that means they require a radioactive tracer injection. The guy with the Geiger counter was doing a safety check on the machine while I was waiting for my test and I made him check me with it. I was indeed radioactive! [↩]
2. PET scans light up when there is either inflammation or cancer. Depending on the location and other symptoms, the doctor can decide whether one should be worried about inflammation or if it’s possibly cancer, thus requiring a biopsy. Hodgkin’s doesn’t hang out in the vocal cords, so we could rule out the Hodge. [↩]