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, ((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!)) Jenny thrives!

OK, maybe not quite. My PET scan lit up in only one spot ((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 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!

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.

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.

a not so great scan

My end of treatment CT scan was not the greatest.

The three problem areas are: still some diffuse bulky mediastinal lymphadenopathy, “tiny patchy irregular low densities within the spleen,” and a new left lower lung nodule.

The mediastinal lymphadenopathy (big chest nodes, for those not current with medical speak) was present on my last PET as were the splenic lesions. Neither area “lit up” on the PET, which seems to suggest that those two areas are likely scar tissue. Scar tissue is very common with the nodular sclerosing subtype of Hodgkin’s Disease. In fact, NS Hodgkin’s is characterized by bands of fibrous scar tissue mixed with the cancerous Reed-Sternberg cells. Since I had bulky disease (i.e. masses bigger than 10 cm), some scar tissue is to be expected. As long as it continues to shrink or stays the same size, the enlarged nodes are considered an abnormal finding, but not a problem. Same with the splenic lesions. (I still have a big spleen, but at least now my doctor can’t find it when pressing on my stomach.)

The new lung nodule is more concerning to me. It is only 1 cm in size, but it is new. The CT scan was done only 2.5 weeks after I had my last chemo treatment, so it seems very odd that the Hodge would have suddenly reared up and spread into my left lung in that short a period of time or while I was still doing chemo. I’ve had problems with my right lung (I still have patchy areas of density — likely related to Bleomycin damage), but nothing has been wrong with the left. I have no symptoms. It is strange. Hodgkin’s can show up in the lungs, but the timing is very odd. It is quite possible the nodule is from an infection or some other cause (like more bleo damage showing up). It is small in size and most lung nodules are benign. Something to again be concerned about, but there could be many logical explanations for it.

My doctor’s plan is to do a rescan in two months. As long as none of this stuff has grown, we can assume it is scar tissue and keep up the “watchful waiting.” While it would have been nice to have a perfect scan, I think that was probably a little too optimistic given the extent of my disease. The obviously smart thing to do is to watch it.

I’m a little bit disappointed, but there are explanations for the abnormalities, so until proven otherwise, I’m not going to freak out about it (at least not too much anyway). I’m running great and I feel normal.

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.)

use the stinkin’ port!

When I was diagnosed with the Hodge, I got something called a Mediport surgically implanted.  A “port” is basically a disk shaped, small object implanted in the chest that allows them to draw blood or deliver chemo without having to ravage your arm veins.  As anyone who recalls my first few CT scans prior to diagnosis knows, I don’t have the best veins.  For one thing, I am kind of thin and for another I seem to have inherited my father’s bad veins.  This resulted in my arms looking like I went a round with Ali after the CT scans.

So although it was a minor surgical procedure to get the port implanted, I am happy to have it.  Its located on my upper left chest (not far below the collarbone).  I had a pediatric port placed because I had such bulky disease in my chest.  It was the smallest size the surgeon had available.  I know this because I stayed awake through the whole surgery, talking with the surgeon.  :)  He ran tris so we talked about running.

The port nicely tucks away under my sports bra strap and it generally doesn’t bother me except sometimes when I am driving in the car and the seat belt rubs against it.

This last week or so I have been going through some of the initial tests I went through when I was diagnosed with the Hodge.  Among these was the combination PET/CT two weeks ago.  I’ve had a PFT and tomorrow I am supposed to get a MUGA scan.  I am not sure I am going for the MUGA scan.  I am tired of being stabbed.

The PFT is a pulmonary function test.  As regular readers here know, I have been having breathing problems, so the PFT was pretty important for me.  One of the chemo drugs is known to cause lung problems.  I seem to have developed lung inflammation and my PFT showed I had decreased markedly in function.  Whether it was due to the chemo or not is still being determined …

I don’t mind the PFT.  It doesn’t involve needles.  Basically you just breathe into a tube a few different ways and that is it.  I could do a PFT every day and not be all that bugged or bothered.

The PET and the MUGA — the MUGA is a heart scan because one of the drugs can cause heart damage — both require needle sticks.  Those do bother me.

However, the outpatient radiology department won’t use the port.  They don’t “like” to use the port, apparently.  Instead they attack my arms or hands.

This begs the question: what the heck is the point to having the port?!?  I had surgery to put it in.  It works great.  Use it!

My father, who also has a port after his own battle with non-hodgkin’s lymphoma, has run into the same issue: the radiology department just flat out doesn’t want to use the port.

Getting a needle stick in the port hurts a lot less than them hunting in my arms.  Only once have I had to be stuck more than once with the port — multiple needle sticks are common for me when the vampires attack my arm or hand veins.

Maybe I am being a little overly sensitive to the issue, but darn it, it’s my body and it’s been through enough pain and sickness and suffering with chemo.  It really ticks me off that radiology won’t use my port for these procedures.

That’s why I have insituted the needle stick rule.  From now on, the vampires are going to be informed that they get ONE chance at the arms.  They can have up to three tries at the port, but its just one try on the arms or hands.  So they better make it count.  No more of this multiple stick business.  From now on, I am sticking up for myself.

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.