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.

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.

the mystery side pain saga

I am going to Gettysburg tomorrow. I am thinking positive — I will not get snowed in to the Cleveland airport, I will not get snowed in to the Cleveland airport, I will not get snowed in to the Cleveland airport, I will not get snowed in to the Cleveland airport, I will not get snowed in to the Cleveland airport …..

I had my weekly blood test, therefore, on Thursday (today) this week. The 8:15 AM blood draw went fine — the mediport makes life so much easier, I’d definitely recommend it to anyone with chronic medical problems involving lots of needles and especially for kids — but then I made the error of mentioning the pain in my side.

Its located on the left (just like Lumpy was) and it is in my rib cage. Its a sharp pain — you runners out there would call it a stitch pain — and it really is only noticeable when I take a deep breath in.

Having run around (literally) for a year with Hodgkin’s Disease in my belly, well, the nurses take me pretty seriously. The doctor on call sent me for a chest x-ray to rule out a pulmonary embolism.

Now I needed to be at work at 10:00 (noon at the very latest), but I figured, how bad can this be? How long can this take?

Getting a routine chest x-ray took until 10:30.

I then marched back over across the street to the Big C center. (I refuse to use THAT word. The C word that is also a constellation and a astrological sign. You know what word. So from now on the its the Big C center.) Dr. K, who I must mention was very young and very cute, saw me quickly. He said my chest x-ray looked normal (well, as normal as it could look with huge medinastinal Hodgkin’s masses), but he felt due to my symptoms they needed to rule out a blood clot, even though a blood clot wasn’t real likely given I went running yesterday and had been active and had no swelling or other symptoms.

So putting my trust in Dr. Handsome, :) I put aside my hunger and thirst and marched across the street to the hospital again. I dutifully sat, stomach growling like a wild animal, head swirling with hunger induced nausea, until 12:00 when I finally got the CT scan of my chest. They had to poke my arm (luckily the tech was good, but I still hate to be poked) since they had to use too much dye for the port. The CT was otherwise uneventful.

I then walked back out into the outpatient radiology room where they told me to wait for the results. Well, my stomach was now in utter rebellion. It wanted food and it wanted it now. I told the attendant I was going to the cafeteria and if I died on the way so be it, if I didn’t get anything to eat soon there would be a bloodbath on par with something out of Braveheart. Ok, so I made that last part up, but I was getting pretty ornery by that point. It didn’t help that all the magazines in the radiology department were from 2005 and all of the TVs were tuned to soap operas and there were now whiny babies all over the place.

So I bought a turkey sandwich and a salad. I ate both in the cafeteria then returned, figuring by now they must have my results. hahaha. Yeah right.

Finally at 2:30, Doctor Handsome told me that I didn’t have a blood clot or any other abnormality (again other than a really big chest mass) and I was free to go.

So that was my entire day. At least I got out of work. I can only hope that I have better luck in the airport tomorrow. And at least I know I can go to Gettysburg without worry of imminent demise.

(By the way, the pain is still there and we still have no clue what the heck is causing it.)

I will not get snowed in to the Cleveland airport, I will not get snowed in to the Cleveland airport, I will not get snowed in to the Cleveland airport, I will not get snowed in to the Cleveland airport, I will not get snowed in to the Cleveland airport …..

all about my nasty CT experience

I finally went to the doctor about that strange hard lumpy thing that has resided on my left side for, oh say, a year now. I am convinced said lumpy thing is an alien, but my doctor is not, and so I ended up being sent for a CT scan of my abdomen.

(As of yet, we still do not know what lumpy is — hopefully it is nothing serious — my doctor has not called yet. He was supposed to call Friday, but it could be as late as Monday. I am hoping no news is good news, but who knows. Anyway, the CT tech assured me lumpy is not an alien. Apparently I watch too much sci fi. But I digress.)

Anyway, being a hypochondriac, I of course went on the web looking for all sorts of information on CT scans. I of course freaked myself out completely and unnecessarily. This post is about my experience. So hopefully someone else freaking out will not freak out quite as much. Or maybe more. Hopefully not more. Since I am sure most people wouldn’t want to read about this, I made it a “More” entry. To read on about it, you have to click “full entry. Warning, there’s some pics.

OK. So, for my CT scan they told me not to eat for four hours before and not to drink anything for two hours before. Which was pretty easy, because it was scheduled for 8:30 AM.

I of course went running. At 6:30 AM, in the dark. My stabilicers came in handy, let me tell you.

I drove through a virtual blizzard to the appointment. OK, it wasn’t THAT bad, but I couldn’t see the car in front of me and I had no clue where I was going, so it was bad to me. It was cold and the snow was blowing around.

I found the building, and parked Bertha. (Bertha is my maroon ‘91 Olds Cutlass. She is rusty, she breaks down a lot, she’s Bertha.) I walked in the building, found the diagnostic testing place without much trouble, and signed in (after of course going to the wrong window the first time).

I was cheerfully greeted with a consent form and told I was going to get barium to drink. And I had a choice of flavors: berry or banana. I chose banana.

I read and signed the form and exchanged it for a 450 ML bottle of “Banana Smoothie” barium and a paper cup.

Drinking the barium was one thing that had me freaked out. I had read online people had to drink like a liter of this stuff. I was thirsty (running helped in that regard), but I still was really worried all week about drinking that much of the barium. I had had barium years back for an upper GI xray and recalled it tasting minty and being the consistency of Mylanta. I didn’t really have THAT bad a memory, but I was worried about the quantity.

The 450 ML bottle didn’t look THAT bad, though. I did notice no one else in this rather crowded room was drinking this stuff though. The bottle even featured a bright yellow picture of bananas.

I managed to get the bottle open, then fiddled with the inner safety seal (lift and peel my butt). I finally got it open. It was filled with mylanta-looking white liquid and had a very faint banana smell. I poured about half into the cup.

First taste: OK, I am an attorney, and I can tell you this was false advertising. Banana smoothie? I have had banana smoothies and none of them tasted remotely like this. It wasn’t that bad, but calling it a banana smoothie was like comparing Willie Mays with an average high school center fielder. No comparison.

The first cup went down fast. The second, I had to keep sipping at it. But I managed to get it all down in fifteen minutes like I was supposed to do. As a plus, it seems to have helped a lot with my acid reflux.

Then I just sat there. And sat there.

I was bored. I brought a book (Culp’s and Cemetery Hill by Pfanz), but there were too many distractions to read. Everyone got called except me, or so it seemed. People came in and would be called back quickly and would come back with IVs. That made me suppose I wasn’t getting an IV, which was a relief. I hate needles.

Finally, after an hour, I got called. I was told to put on a hospital gown (nothing like adding insult to injury). I changed and then walked into the CT room. I was greeted with another cup of barium (more like half of the cup I had been drinking out of before, so I am guessing 8 ounces) and asked a litany of allergy questions. To my knowledge, I am not allergic to anything.

I laid down and was told, cheerfully of course, that yeah, I was getting an IV. Great. The first attempt didn’t work so I got to get stabbed twice. An IV hurt a heck of a lot more than just a shot or having blood drawn.

Here’s the aftermath.

My right and left arms. The left ended up with the IV. Grossed out yet?

After getting the IVs in (but before they added any dye), the tech notice I was completely broken out all over my neck with hives. Grrrrrrreeeeeeaaaaatttttt. They didn’t itch (at the time) or anything, so I hadn’t noticed. She started asking questions like, uh, are you having trouble breathing. Ever notice that when someone asks you if you’re having trouble breathing, all of sudden you start having trouble breathing?

If you’d like to get really grossed out, you can enlarge the picture of my neck. The hives still are there and are not going away as far as I can ascertain …

The tech concluded I am probably allergic to something in the barium, most likely the saccharine used to make it sweet.

(In truth, the barium would have likely been more palatable without the flavoring)

ANYWAY, she first took a set of pictures without the dye. It was quick and painless. Took maybe five minutes at most.

Then she injected the dye. It made me feel flushed a little, but nothing serious. Another set of pictures was taken with the dye.

And then that was it.

She took out the IV (it didn’t hurt coming out) and I was allowed to leave.

Results hopefully tomorrow.