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.

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.

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.

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.

today I am a 1-year survivor

I am a one year cancer survivor as of today.

Most of you probably associate today, Valentine’s Day with love — red hearts, paper lace kisses, candy, flowers, that sort of thing. A few of you probably feel pretty cynical about it because your not in a relationship.

For me, I can’t separate the day from the fact that I was diagnosed with cancer.

Every sugary sweet and sappy commercial, was a reminder. All the people wearing red at the gym - a reminder.

It was at 11:42 AM on this day last year, almost exactly the time I’m writing this, that I was diagnosed with Hodgkin’s Disease. As a history buff, I tend to note times and dates when important things happen (I can tell you with precision exactly where I was when I learned about September 11th for example.)

My initial diagnosis was primary liver cancer with a 6 month suggested prognosis.

For about a week, therefore, I thought “I am going to die.” Of course, any of us can leave this earth at any moment, but, well, this was different. This was a mathematical certainty, this was a sentence. I didn’t want to say anything here until I knew for sure — but I did all the things you would think you would do if you found out your time was severely limited. I planned all these things I was going to try and do before I got really sick.

So in the span of a five minute conversation, I went from I’m going to die in 6 months to I have a treatable, even dare I utter curable cancer and maybe, just maybe I’m going to die in 50 years instead.

Of course that chance for 50 years came with the catch that to get the chance, I had to do 8 months of pretty nasty chemotherapy.

And it’s not as though Hodgkin’s Disease was an easy road, not that Hodgkin’s Disease is a “good” cancer. Hodgkin’s Disease is very treatable and it is even curable, but only about 3/4ths of the time. And I was in trouble from the start. I had massive disease. Although I was most focused on the abdominal mass, it was the chest masses that were dangerous. You don’t have too much room in your mediastinum (the area between your heart and lungs) for your lymph nodes to grow to Godzilla size. My veins — especially the superior vena cava, the main vein that drains the blood from you head — were compressed. I had early stages of SVC Syndrome (an often fatal disorder).

Dr. S later told me he was up all night worrying about me because he was concerned he wouldn’t get all the staging tests done in time before I started developing serious problems. He said untreated he thought I might make it maybe three months.

But the wide swing from death sentence to you’ll probably live made me a touch neurotic — it’s very tough to shift gears from I am going to die to you’re going to live, but you have to do 8 months of chemo. Poor Dr. S, he didn’t know WHAT to do with this defiant runner who cavalierly brought her running shoes to the first appointment and told him “I’m not sick.”

I will always be very grateful to Dr. S for recognizing the severity of the situation and getting me into treatment as soon as he possibly could. (Even if I do still think he’s a vampire.)

I will remember with a touch more fondness May 18 (”Jennifer, I am pleasantly surprised, your scan was excellent, really much better than I expected.” “So that’s good right?” “Yes, you are in remission.”) and September 21st — the last day of chemo.

So although I will never associate Valentine’s Day with flowers, cards, candy, and love again, although the day will always have an association with a terrible disease, I am thankful I outlived my original diagnosis and I’m still here and out running a whole year later.

it’s MY BLOG

It’s my blog and I’ll selfishly self-promote myself if I want to! (I mean, if a blog isn’t for self-promotion, what is a blog for?)

As you may or may not know, depending on how much attention you pay to the blog (and if it’s not much, I understand *sniff*), I am writing on the web editorial staff for Running Times Magazine. They just published my third article on their site.

Here’s a link to the newest article:

• Running Battles: Mountains and Valleys

And here are the past two if you want to read them:

• Running Battles: A Hard Run
• Running Battles: Serious Fun

Other than that, I’d like to say Medrol is my friend and costochondritis is not a fun condition to have, but mine is much better today. (My xiphoid¹ process² hurts!)

Ever try to tell people your xiphoid process hurts?

“What seems to be the problem?”

“Doctor, my xiphoid process hurts.”

“You think your WHAT hurts?”

“My xiphoid process. See I took anatomy in college, and I think that’s what hurts.”

(Maybe I was mispronouncing xiphoid or something?)

“Oh.”

If I say my abdomen hurts, then the doctor starts assuming it’s my stomach that’s the problem. If I say it’s my chest that really hurts, then people panic (something about chest pain gets people’s attention.) And the xiphoid process is not really the stomach or the chest. I figured if I said xiphoid process, they’d know what I was talking about, but apparently it just strikes them as odd that I knew what a xiphoid process is. Maybe I pronounced it wrong and they just didn’t want to tell me. Oh well.

So anyway score points for Jenny and her amazing memory — it turned out it is my xiphoid process that is inflamed. I seem to have the classic costochondritis symptoms — pain when you push on the breastbone.

I am even my usual self today; i.e. having trouble sitting still and eating everything I can lay my hands upon. I suppose you COULD blame the Medrol because those sound like steroid side effects, but let’s be honest … I’m always like this and when I’m not like this, I’m usually sick.

1. Xiphoid is Greek for sword. [↩]
2. i.e. the bony thing in the bottom of the breastbone, in the upper abdomen, between the ribs [↩]