Ugh.

Just … ugh.

I had my CT scan on Monday as planned. Sunday night, my stomach was upset. Nothing major, just your typical upset stomach. It was still upset Monday morning when I had my scan. I figured it was nerves. After all, cancer “restaging” scans are not the most pleasant things — they cause a lot of anxiety and stress over the results.

My stomach remained mildly upset up until my Wednesday afternoon appointment with my oncologist. I even had to stop running on Wednesday morning due to some stomach cramps. (I attributed said cramps to dehydration. I ran indoors on the treadmill on Monday and I don’t think I hydrated back up adequately afterwards.)

My oncologist’s first question this time wasn’t “any lumps or bumps?” or “how’s your chest?” but rather “how does your stomach feel?” That was a new one, but hey maybe Dr. S gets tired of asking the same questions all the time. Or maybe he just wanted to make sure I was awake. I told him it had been a little upset.

Turns out he had a reason to ask.

The CT scan came back good on the chest. The lymphadenopathy in my chest (i.e. those baseball size masses) had stayed the same size and is even starting to calcify. My spleen remains enlarged, but it hasn’t grown or anything. All and all good.

But of course I can’t have a normal CT scan. The scan came back with this:

In the left upper quadrant, there is a loop of proximal small bowel, likely jejunum, which has concentric appearance of an intussusception. This is anterior to the left kidney and medial to the spleen. This may be a transient phenomenon, however, given the history of lymphoma, a pathological lead point cannot be excluded. Small bowel follow through is suggested. No evidence of bowel obstruction is seen supporting a transient etiology.

An intussusception is basically an obstruction of the small intestine. It most often occurs in children. When it occurs in an adult, it’s likely due to a benign or malignant neoplastic growth.

Adding to the problem, I happen to be one of an apparent handful of people in the entire world who is allergic to oral contrast. A “small bowel follow through” involves drinking barium and then making sure it doesn’t get stuck along the way (if it did, that would suggest an obstruction). Kind of hard to do when you’re allergic to oral contrast.

Since I had none of the acute symptoms one would expect of a person with a bowel obstruction, it obviously was not an emergency or anything. That was the good news.

To make a long story short, it appears that it turned out to be nothing to worry about. Basically, the doctor concluded it’s a watch and wait type of issue, just like my baseball sized masses in my chest and my giant spleen. As long as nothing goes wrong, we don’t do anything. That type of thing. We let sleeping dogs lie so to speak.

But of course my stomach has remained mildly but persistently upset all through the weekend, which raises an interesting issue as to whether there is something going on or not. If not for the scan result, I would not even be complaining in the least about this mild stomach upset. So now what? Even though it didn’t appear to be a problem, do I go back to my oncologist (which would mean more tests)? Or should I just sit tight and wait it out. That is what I mean by …. ugh.

it makes you nervous

I don’t normally comment here on current events or on politics. But the news that Sen. Arlen Specter’s cancer returned gave me a pause. Specter is a fellow Hodgkin’s survivor. Like me, he had advanced disease. He made it three years in remission — generally HD, if it comes back, makes it’s ugly presence known in the first two years — and yet still relapsed even though he claims that he was feeling great.

Specter had a couple strikes against him — he’s a male (sorry guys being male is a negative prognostic factor in advanced stage HD), he was stage 4B (that’s as bad as it gets), and he was over 45 (age being another negative prognostic factor).

Nevertheless, it makes you nervous. And it makes you wonder what you’d do if your number comes up. Stem cell transplantation is the usual treatment for relapsed Hodgkin’s Disease and it cures some people, but given the state of my lungs, I’d have to think long and hard about it. I kind of feel as though I don’t have another fight like that left in me. Eight months worth of ABVD pretty much knocked all the wind and fight out.

There’s also a fear of being left worse off having done something extreme like a stem cell transplant than you would have been just trying to manage and control the Hodgkin’s Disease (even acknowledging that there would be no cure).

Hopefully, it is not something I ever need to consider, but it’s always in the back of the mind and it makes it really difficult to plan and live your life.

My Two Minutes of Fame

If you would like to see me run and (for better or worse) hear what I sound like (yes, I do have a pretty significant Cleveland accent), here’s your chance.

Running Jenny

Make sure you watch the video, of course. Enjoy!

One thing that didn’t make it into the video that I want to say is thank you to my doctor and the nurses and staff at Fairview Hospital and the Moll Cancer Center. In eight months of constant contact with the medical profession, I didn’t run into one bad person. Someone had to have a bad day in there, but they never let it show. I am thankful such smart and compassionate people choose such a tough field as oncology.

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.

tracing back

Like many runners, I keep a pretty detailed log of my daily runs that contains all sorts of interesting details about the weather, how I felt, etc. I have these ratty handwritten logs (I won’t trust the computer) all the way back to 1998. Pretty impressive. I have every run logged, including my relatively rare races. I have been combing through my old running logs, curious about what my first Hodgkin’s Disease symptoms may have been and when it may have actually begun. I found the following:

• In April of 2005, I complained of being tired, having a headache, and having mild night sweats. I think this must have been my very first inkling of Hodgkin’s Disease.
• In June 2005, I had a routine blood test and was anemic (hemoglobin of 11.0).
• Another mention of mild night sweats in July 2005, along with aches in back and shoulders.
• In November 2005, complaints of shortness of breath doing speed-work, cough, periodic fever and night sweats. Also same symptoms in December 2005.
• February 2006, first mention that my left side seemed hard like a rock.
• March 2006, June 2006, July 2006: the same symptoms I had in November 2005.
• Mention of severe itching on chest that won’t go away, July 2006.
• August 2006: same symptoms, but additional complaint of stuffy head, chest pain. (This was probably SVC Syndrome.)
• November 2006: severe pain in right neck and shoulder, attributed to the computer.
• December 2006: another bout of symptoms, along with more pain.
• January 2007: finally see the doctor.

By the time I was diagnosed, my hemoglobin was dangerously low, my platelets were too low, and I had visible SVC syndrome to go along with the abdominal mass that I didn’t realize was a mass.

I slowly over the course of 2005 through 2007 watched my pace increase (the wrong way) from where I could run a 5K in about 23 minutes to where by the time I was diagnosed in February, I couldn’t run one if someone was chasing me with a knife in under 35 minutes. Now, for example, I can do most of my longer runs at a 8:30 pace (I still lack the short distance speed I once had).

I’m posting this as a warning as to why vague symptoms — even things as simple as “I’m having trouble running hard” or my pace is increasing and I don’t know why — need to be checked out and not ignored.

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!

good vibes

More good vibes needed for my pal Cody.

I hate cancer.

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.

Cost of Cancer

A visitor asked how much my year of cancer cost. Not including the problems I had this year, my insurance company was billed approximately $477,000.00 in 2007. I paid “only” a $2,000.00 deductible and spent “only” $1,400.00 out of pocket in drug copays.

Even with the help of my folks, I exhausted my savings. Most 27 year olds don’t have $3,400.00 just laying around, especially when they need to stop working for awhile.

Ah.  I forgot every time I went to see a doctor, I got billed $25.00 as a co-pay.  I saw my primary care doctor once, three surgeons, a cardiologist, and a lung doctor.  I also saw my oncologist (or a partner) 18 times in 2007.  So to my out of pocket expenses, add on another $500.00 or so.

I am not complaining, I am grateful I had / have health insurance. But a note to anyone reading this from Cleveland-Marshall College of Law — that was my law school. This is why I get angry when people from the law school call and ask me to donate $500.00 three or four times per year even after I ask them to please stop calling.