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’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 [↩]

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. [↩]

my CT scan …

Christmas came a little early.

My CT scan was clean. (Ok, I probably will never have a clean scan. But nothing grew or changed. In fact, some of my masses shrunk a little, and my lung nodule disappeared).

This is the best Christmas present ever.

pink castles in the sky

Starting to recover from chemo.

I woke up early this morning and went running before the sun rise — which this time of year is not all that early. The sun came up as a red fireball. It then turned the sky a sort of pinkish hue — think the color of pink lemonade — and cast an interesting and unique color on some of the clouds that were stacked just like castles in the sky — pink turrets rising above Cleveland, Ohio.

It felt like July rather than September. It was humid and warm. Only the leaves on the trees (which have turned early due to drought) and the angle of the sun coming up in the east insisted that yes, it is really, finally September.

I’m not over chemo — yet. There is a stiffness in my lower back (a lingering effect probably of all that darned Neulasta actually, a white blood cell booster somewhat infamous for causing bone pain) and my own personal “achilles heel” which is actually located somewhat north of the actual tendon (i.e. my calves) were sore and complained long and loud about the pace I set. But stiffness and sore legs are a sign of being alive, so I suppose I can’t complain about them (or at least not as much as I used to do).

There are other lingering chemo effects — my mental focus is still fuzzy and hazy compared to what it was (probably from being bombarded by too much at once rather than the dreaded cloudiness known as “chemo brain”), my sense of taste isn’t all back (although I really want a big juicy hamburger), I think I smell like chemo. If I really do smell like chemo to others, they are polite enough to either not to say anything or insist that I don’t (so maybe this is my own peculiar sensitivity), but I really do think I smell of medical chemicals and that was one of the parts of this cancer-killing business that I really hated — the strange, bad chemical smell. (I suppose I could think of it as the stench of a thousand Reed-Sternberg Hodgkin’s cells dying. But really it just reminds me of what downtown Cleveland smells like on a bad air day.)

I am further convinced that I smell like chemo because the mosquitoes still don’t pay attention to me, though non-biting bugs like yellow jackets love to chase me. If the mosquitoes never again find my blood appealing, I think I can learn to live with that shunning.

One positive — other than the mosquito proofing which I’m sure will prove temporary but I hope will last until the first killing frost — is a joyous sense of being alive. It is difficult to explain, but a lot of stuff that used to bother me no longer does. A lot of stuff I used to worry about just doesn’t seem worthy of bother anymore.

I’m not yet done with the Hodge — there are blood tests and scans and doctor’s appointments to fulfill over the next couple weeks — reminders of treatment. But I’ve reached the end of the worst part; the clean up is all that remains.

My true and sincere thanks to those of you who have suffered along with me and cheered and supported me along the way.

Good Riddance.

I hearby announce the death of Jenny’s Hodgkin’s Disease (February 14, 2007 - September 21, 2007). Hodgkin’s Disease: May you rot for an Eternity in the Ninth Circle of Hell; may your malignant cells be chewed and masticated for all time by the three heads of Satan as depicted in Dante’s Inferno.

PET scan musings

By nature, I think I am a pessimist. Not on all things, perhaps, but on many things I take the glass is half empty outlook. You don’t get as disappointed that way.

I am very excited and happy and even a little stunned that Dr. S declared me in remission. Admittedly, though, my excitement has been tempered by that new finding of “patchy areas” and “nodules” in my right lung. What is really bothering me is it is a “new” finding.

However, having done some research on the internet (always a dangerous activity, I know), I am beginning to become convinced that the “new” nodules and areas the radiologist considered “active inflammation” are the result of the “B” drug in the ABVD cocktail, bleomycin.

Bleo, as we affectionately call it, is known to cause lung toxcity. I haven’t been running in almost a week due to the pulled groin, but earlier in the week when I was running I was noticing some modest breathing difficulties. Plus, when I take a really deep breath I find I really can’t; I end up coughing instead.

So I think that the “new” finding may very well be a result of the “B” drug rather than the Hodge dying everywhere else but spreading into my lung. I have a pulmonary function test on Friday so maybe that will also shed some light.

For now, though, I think I am just going to try and focus on being in remission. Only nine more treatments left to go. If I stay on the schedule, I should have my last one on September 21, 2007. The road to heaven might lead back through hell …. But I think the heaven on the other side will be worth it.

remission

I am not sure how to react to the remission news.

Part of me is still in shock — the Hodge is really dying, this is all really worth it — part of me is unable to celebrate due to the hazy feeling still lingering after treatment number seven (which was yesterday).

The road to go still seems too long and winding, but for the first time I feel like I’ve actually seen the crest of the hill, and that cure really seems obtainable.

The journey continues.

PET Scan Results

My doctor claims this medical gobbly-gook means remission!  But here’s the actual report itself:

–

FINDINGS:  In the chest, minimal glycolytic activity is identified in the mediastnal and right hilar adenopathy, with maximal SUV of less than 2.  Due to the confluence of the nodal masses, measurement of individual nodes is difficult.  Overall, the thoracic adenopathy appears to have slightly decreased in size since the previous CT.  The tip of a Port-A-Cath is in the right atrium.  There is a trace pericardial effucsion.

Mild glycolytic activity is identified in the mild to moderate patchy and nodular opactities in the right lung with maximal SUV of 2.4 in the superior segment of the right lower lobe.  These are new where compared to the previous CT examination.

In the abdomen, minimal, heterogeneous glycolytic activitiy is identified in the enlarged spleen, which measures about 19 cm in cranlocaudal dimension.

In the pelvis, no suspicious hypermetabolic lesion is identified.

Moderate activity is identified in the marrow throughtout the skelton.

IMPRESSION 1.  The confluent mediastinal and right hilar adenopathy shows only minimal glycolytic activitiy.  No focally intense activitiy is identified.
2.  Mild glycolytic activity identified in the patchy and nodular opactities in the right lung when compared to previous CT.  Presumably, the appearence is secondary to activie inflammation; follow-up to resolution is recommendeded to exclude malignancy.
3. Only minimal activity is identified in the enlarged spleen.  Again, no focally intense activitiy is identified.
4.  The tip of the Port-A-Cath is in the right atrium.
5.  Moderate activitiy in the marrow throughtout the skelton is presumably secondary to marrow stimulation wtih medication.

–

The only thing causing concern for me is that right lung finding.  My doctor is shrugging it off as nothing to worry about.

PET scan tomorrow

I have a PET scan tomorrow.  I am not sure why we’re doing it tomorrow (it’s not halfway yet), but be that as it may, that’s when it is scheduled for.

I am actually sort of aggravated about it because it means going without eating for six hours prior (they scheduled it for 1:00 in the afternoon) and then its a nearly two hour test.  I get very testy when I can’t eat — and also rather sick to my stomach.  Just what I need to feel the day before chemo.  From now on, I am going to demand all tests be done first thing in the morning.  I will just have to hope I don’t pass out tomorrow.

The PET scan is the gold standard scan for lymphoma, especially for the Hodge.  Since the Hodge tends to leave tons of scar tissue, I’ll probably never have a normal CT scan.  What the PET scan does is distingush between active disease and scar tissue.

(You better believe if I get a copy of my PET scan I am going to post it.  A PET scan is cool because unlike a CT scan a layperson can easily read a PET scan.  If I get a copy of my pictures, I’ll explain more.)