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. [↩]

Beautiful, biohazardous Jenny

Thought since I am up late fighting off nausea that I’d at least do something productive with myself. I took a picture today, to show my friends just how well and healthy I actually look. Now if only I actually felt as well as I look in the picture! Other than the central line in my chest, this is the healthiest I have appeared in quite a long time.

Runner’s World cover material, most certainly not. (Sorry.) Just your plain, ordinary runner girl.

I have a PET scan tomorrow (no, I am not taking anything written by Robert Krick, just to be safe). The scan is to rule out Hodgkin’s as a possibility for my symptoms. Super onc said to cross fingers on both hands and toes on both feet … so if you’re so inclined, please cross your fingers and your toes. Probably will know more by tomorrow evening, even if it isn’t totally definitive.

I appreciate all you kind people who read my blog and post encouraging messages. Thank you.

dealing

Unable to catch a break of late. Latest symptoms are spontaneous bruising, and a swollen sore liver. Doing the whole work up again. Scans and other tests this week. Hodgkin’s is always a possibility, of course, but a relapse usually doesn’t present this way. Some of the other possibilities are much worse than even a Hodgkin’s relapse. It’s again the wait and see game. Spending way too much time with Dr. S and his staff right now.

13 down, 3 to go

I managed to just squeak through treatment number 13. It was the worst treatment since the first, mainly because of severe anticipatory nausea and a terrible attack of acid reflux. And that’s all I am going to say about it.

I thankfully have only three chemo sessions left to go.

And, for those wondering, no, Robert Krick did not mess up my PET scan. Other than a high SUV of 6.2 throughout my skelton, my PET was clean. My chest masses seem to have disappeared. My spleen is still enlarged, although even that is shrinking. Other than the spleen and the high SUV in the marrow which we are near certain is being caused by the marrow being thrown into overdrive by Aransep, Neulasta, and chemo itself, I would be “normal.”

This is all good stuff, I just wish chemo would not be so difficult and that I could get some sort of hold on this crazy anticipatory nausea stuff.

if my PET scan is messed up …

… I am blaming Robert Krick.

This is one of those unusual posts that somehow ends up in both the Hodgkin’s category and the Civil War category. You’re probably wondering how some very high tech nuclear medicine cancer scan relates to the Civil War. Well, I’ll admit, the relationship is tenuous as best. But hey you’ve read this far, so you’re either bored or experiencing insomnia so let me explain further.

As a Civil War whatever (buff? afficanado? amateur historian? webmaster? you pick the term) I am usually reading something about the Civil War. Yesterday, I was at one of those rare points where I am not currently reading anything. Ok, that’s not quite true. I had just finished rereading William Hassler’s biography of A.P. Hill (we won’t go into how many times I have read that). I am still rereading Douglas Southall Freeman’s classic Lee’s Lieutenants (give me a break, it’s three volumes!) but I don’t like to take that one to medical appointments because it attracts stares and inevitably questions. For some reason, people never ask me about what I am reading except when I bring Lee’s Lieutenants. I have concluded it is because the volumes of Lee’s Lieutenants are so fat. I can’t think of any other reason. Anyway. That’s the main reason I am reading two different things at a time. Obviously I spend a lot of time in and out of medical appointments.

Ok, the point of that rather long digression was to say I had to quickly grab something off the shelf to take to the PET scan. Since most of my readers have never had a PET scan or been a cancer patient, let me explain two salient points. First, you never go to outpatient radiology (or that matter any medical appointment) and expect it to be FAST (the exception is if you have something visibly wrong with you: the outpatient radiology department doesn’t want you hurling on their carpet or bleeding everywhere.). If they say 10:15, expect to be called at 12:00. It’s like the Army. Hurry up and wait. Second, a PET scan requires that you sit quietly for at least half an hour while a radioactive glucose tracer circulates in your system. I’ll explain more about that in a minute. The point is if you don’t take something to do, you’ll die of boredom. So I had to find a book and fast.

By the way, the reason I was running late because I couldn’t find my stinking insurance card. I found it, luckily. The lady at the radiology desk knows me by name, (I never thought I’d be known by name by the staff of the radiology department ….) but every time I go, they have to photocopy my insurance card. Medicine is the one profession that likes killing trees, apparently, even more than the judical system.

Anyway, its not hard for me to find something to read; I have quite a little Civil War library. So I had a lot to pick from. I did the shelf scan and for whatever reason my eyes settled on Smoothbore Volley that Doomed the Confederacy. It is a series of essays on the Army of Northern Virginia by, yes, you guessed it, the aforementioned Robert Krick. I figured it was a good choice — essays can easily be interupted if necessary.

(I’ve read it before. I bought this book because it had an essay on one of A.P. Hill’s generals named Maxcy Gregg. But the whole thing is very good.)

At this point I imagine I’ve lost all but my most loyal readers. Either your a loyal reader or you must BE Robert Krick fresh to this blog via the incredible Google search engine and want to know how you messed up some poor girl that you’ve never met’s cancer scan. So let me say if you’re still with me, thanks for being one of my most loyal readers. And if you’re Robert Krick, comment and say hi. I find hearing from real historians really cool. I mean, it wouldn’t be as cool as Grady Sizemore hitting a homerun for me or something, but it is the sort of thing that makes my day. Really.

Now, I really like reading Robert Krick. I don’t always agree with his conclusions, but I like his writing style (I find it easy to read and he has a wonderful, acid wit) . Krick is also one of the leading authorities on the Army of Northern Virginia, which of course is also my big interest (obviously, as an A.P. Hill champion). Even if you don’t like his analysis, he has access to the type of research library (including primary sources) that would make the mouth of anyone interested in the Army of Northern Virginia water excessively. Krick’s stuff is, therefore, filled with fascinating tidbits you probably haven’t heard of or read anywhere else. In terms of research scope and in terms of his “loyalties” think modern day D.S. Freeman.

It wasn’t till I read a study on PET scan today that I realized picking up Krick’s book was a bad choice on my part.

To explain we have to go back to the PET scan for a moment. Basically what happens at a PET scan is the tech injects a small amount of radioactive tracer that is attached to glucose. Then you basically have to sit there quietly while the tracer circulates through the body; how long you sit depends on your body weight and height. Cancer cells are overactive and fast dividing so they love glucose. They eagerly grab onto the glucose — and the tracer. The scan works by showing the areas picking up glucose the fastest — suspected areas of cancer basically “light up” brighter than non-cancerous areas. The actual scan is just like the much more commonly administered CT scan; it just takes longer (again depending on how tall and heavy you are; someone small like me only actually takes 8 minutes to scan).

So you’re now probably completely lost as to how Robert Krick could mess up my PET scan.

The PET scan is incredibly accurate for diagnosing you when you’re negative. It’s big drawback is it is too good. You can get a false positive — a lit area — because of inflammation or a host of other non-maligant conditions. In fact a study on PET scan showed that “any kind of activity, even energetic foot tapping, before a pet scan can alter the results thus making them not so reliable.”

So, I figure if my PET scan lights up in my jaw, it may be because I read Robert Krick’s essay on Robert Rodes beforehand. Here I was supposed to be sitting quietly and I could not help laughing as I read Krick’s characterization of Rodes’ wife as “pyromanical” (she burned all his personal papers). Or Lee’s chief of artillery (a man named William Pendelton) described as “wretchedly inept.” Historians rarely indulge in such language. When they do I find it really entertaining and funny. Particularly when what they are saying is true. Pendelton was woefully incompetent.

But lesson learned. Next time I will pick something duller. Maybe someone’s memoirs. Or I’ll try and think of the most boring Civil War general I have a biography on. (Guess that means I won’t be taking Sickles the Incredible!)

(Fingers crossed please — seriously, a “messed” up PET scan would be expensive, stressful, and probably indicative that something is seriously wrong at this point. Plus, I don’t want to have to explain why it might be wrong to my oncologist. Can you imagine me trying to explain all this to him? Not only is he likely not interested in the least in the Civil War, he’s actually from New Zealand. So he’s really not likely to be interested or to understand any of this!)

I’m radioactive

Apparently I am radioactive until May 28, 2007.  They even gave me a card to carry.

 Not only do my drugs come in a biohazard bag, but now I have to carry around a little card with me that suggests that small animals and little children should probably stay away.

(I checked.  I don’t glow in the dark and I don’t seem to have gained any super powers beyond my normal, above average charm.)

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.)