Drum Roll Please....

Well the verdict is finally in...



Hodgkin's Disease Stage 3B. This means the Lymphoma is in both the right and left side of my body AND above and below the diagram, but has not yet infilitrated my bone marrow.



Chemo will start next week.

Radiologists are supposed to look at pictures, aren't they?

Well today I am getting a mediport installed so I won't need IV's anymore. Cool! Of course it takes them 1 false stick, 1 blown vein and 2 hep locks to finally get an IV going.




Now, I don't know about you, but Radiologists are just supposed to look at pictures of xrays, CTscans, etc... right? I mean, they don't even take the pictures themselves, they just look at the pictures the tech takes. Keeping this in mind I was a little freaked out when they said a Radiologist was going to be cutting into my Jugular! Radiologist look at pictures, Surgeon's cut, right?... No! It's called Special Procedures. Yipes! What will they think of next? Housekeeping doing Vital Signs?!



Anyway... My appt is at 8:00 am. They tell me to be there by 6:30 am for labs etc... By 7:30 am I am ready to go lying on a gurney trying to stay awake talking to my husband. The Radiologist is nowhere to be found. They have paged him 3 times and emailed him twice. Finally at 8:15 am Radio #2 comes in to go over the procedure, sign the paperwork and show me what the Medi-Port looks like (surprisingly, it looks like a Star Trek communicator, One to beam up Scotty!).



They finally wheel me into the room at 8:45. Radio #2 said they prefer to put the port on the right side and the neck wound won't matter. Well at 9:10 Radio #1 finally shows up! He says he doesn't come in until 9:00. Well excuse me! Shouldn't you not schedule procedures for times you don't plan on being there?!?!? Anyways...





I'm all hooked up and ready to go when Radio #1 says he doesn't want to do the right side, so they move all of the monitors to the left. Then he decides he'll look at my CT's and notices there are enlarged nodes on the left and he will do it on the right. Move the equipment again! Now we're set. The tech gets me all scrubbed up and disinfected when low and behold the Radio changes his mind AGAIN!!! Now they move everything so he can use the left side. We get all scrubbed up again for the left side and he decides I now need another IV in the left hand (I already had one in the right). A cafeteria lady could have stuck me better than this tech that was there OOOWWWW! The port is installed in front of a rib where my chest wall ends and the breast tissue starts. So it kinda floats on top of my boob. Interesting.

Finally, at 10:35 we get started. Remember, it was supposed to start at 8:00 and be done by 9:30. This whole time my husband is pacing the waiting room hearing Code Blues and Stat pages for Doctors really getting worried. No one at the reception desk can tell him anything!



By 12:00 I am back in the waiting room to wait again for a chest Xray to check placement. The Xray gets done at 12:30 pm. I should be home in a Vicodin induced euphoria by now! I tell my husband to hand me my clothes and am so fed up by this point I tell him if the films aren't read by 1:00, I'm leaving AMA. They'll call me if there's a problem. At 12:55 they announce I'm fine and can leave!!



Now I know this is a long entry. My husband and I have a really positive attitude and pretty much nothing bothers us. BUT, this day just pushed us too far.

Stephen King's IT...

Today is PFT day! My allergist is giving me a Pulmonary Function Test to determine if my lungs are strong enough to handle the chemo. Yeah! You blow into this cardboard tube and a computer animated birthday cake simulates you blowing out the candles while a really freaky looking clown looks on. I feel about 6 years old!

Bride of Frankenstein

Well, had the Lymph Nodes taken out today. The node was taken out under General Anesthesia at Methodist Outpatient. The Surgeon used the natural crease in my neck for the incision line so over time the scar will fade and not be noticeable. That being said however, right now it looks like Dr. Frankenstein got a hold of me! The incision is 2-3 inches long with stitches hanging out and its black from the dried blood. As if that's not enough, my husband says I look like one of those snakes that swallows eggs whole and you can see it bulging out as it goes through them! They removed several nodes and I guess one little guy misses his buddies because he has swelled up pretty big in protest!

This piture is one week post-op. So it looks a little better than it did.

Surgical Oncologist

Met with a Surgical Oncologist today. They are going to remove some Lymph Nodes on the right side of my neck for biopsy. They have to remove the entire Node rather than do a Needle Biopsy to get an accurate Lymphoma Classification. We're looking at sometime next week. Dr. Newman's office is so good we got in and out within the 30 minute parking grace period and didn't have to pay for parking! WooHooo!

Cat Scan, Pet Scan, Dog Scan Anyone?

The PET scan wasn't as bad as I thought it would be. I took a muscle relaxant ahead of time and it really helped. The scan is laying down with a camera starting at your head and slowly moving down to the mid-thigh level. The whole thing takes about 45 minutes for the Glucose to work and 45 minutes for the scan. The Glucose injection binds with the cancer cells to make them more visible on the scan and to tell how far the cancer has spread through the Lymphatic System.

Muga Scan

Well today it's off for a Muga Scan. There is a history of heart problems with my father so we have to be extra careful with the chemo. All this and it only took my father 2 weeks to return a phone call for heart history so I could start chemo confident it wouldn't kill me by inducing heart failure.

"It's Bad News, but it's Good News"

In the words of my PCP...



Bad News...Cancer

Good News...Lymphoma



I now have 25 minutes to get to the Hematologist's office for a consult. This is good. Tell a hyper red-head she has cancer then put her behind the wheel of her cruiser to whisk off to another unexpected appt. Pedestrians Beware!



Dr. Guzley (my Hemo) says I'm stage 3 Lymphoma but will need a biopsy to confirm what kind. I'm still yellow, but the good news is my Bilirubin is SLOWLY going down, only 7.3 now.

Got Barium?

Yummy! Lemon flavored barium, my favorite. After choking down 2 liters of this stuff, it's off to CT my Abdomen and Pelvis.



1 hour after I left the Imaging Center my Doctor called me personally (you know that's never good). Something looks odd with my Lymoh Nodes on the CT. Lucky me, I get to drink 2 more liters of Lemon Barium on Tuesday (holiday weekend) and have IV Enhancement to CT my Abdomen and Chest.

Labs are back

Well all Hepatitis labs came back Negative. My Liver labs however are way out of whack!

Bilirubin 10.7 (normal is .2-1.3)

Alkaline Phosphate 652 (normal 20-125)

AST 162 (normal 2-35)

ALT 218 (normal 2-40)



YIKES!!! The lab had to re-run the blood to verify because they were so high they thought it was a mistake.