Very Long Day

Today was VERY long! We left our house at 6:30am, it took an hour and a half to get to the already crowded parking garage (how do people do this to get to work every day!).

After trecking up to the third floor of the east campus, greeted with a clipboard of the same paperwork that I've filled out a million times before we sat in the waiting room. Shortly after, the tech brought out the liquid highlighter for me to drink (2 containers - yuck!) After choking that down for an hour, I was taken back to a very small room to find my single vein for the IV. Success! One shot and the IV was in!! So the tech then says that he's going to shoot "radioactive fluid" into the IV and I will have to sit in this little room for an hour and let it "flow" before doing the scan. He then comes back with this massive lead suringe filled with the potent liquid that would soon be lighting my insides up. After injecting it he shuts the door and so I wait, feeling like my own personal light bulb.

So I play with all of the buttons on the wall - the radio, hooray! So as I recline the lounge chair and flip through all of the (male gender bias) magazines, I wait. Finally an hour passes, after changing into the scratchy johnny we went into the PET/Scan room. This was a simple test for all of the preparations! No holding your breath like the MRIs or CT/Scans, just lay there... the instructions were "fall asleep if you'd like" (easier said than done). So after who knows how long, we'll guess 45 minutes or so I was done - terrific! Now comes time to talk this sweet tech into leaving my IV in so that I wouldn't have to be stabbed again later, he already took my one vein, I wasn't sure they'd find another. He agreed, amazing!

So John Michael and I were off, time to eat! We walked the Fenway, up and down the roads waiting for someplace to open for lunch, alas, Longhorn. After eating we went next door to the movie theater to catch knowing (Nicholas Cage), CREEPY! however, perfect timing for the block of time we had in between the exams. Okay so the world ends (in the movie) and then we head back to real life.

Now we're headed over to West Campus for the head MRI, so after going to the MRI Suite (nothing like a hotel suite), I was told that I was scheduled in the "mobile MRI room". Okay, so then we're on the search yet again. Finally we find this tiny room, check in (more of the same paper work), reput on a johnny and then wait. After 10 minutes or so a nurse takes me up a ramp, out the door to a tunnel of sorts, then into a handicap lift into the sliding door of a truck, okay so when they say mobile, they mean mobile! Okay this is new, I'm in a truck with an MRI machine, excited that I already have my IV we start right away. After plugging my ears and strapping on a helmet with a tiny mirror so that I could see only my own eyes they slide me in the cylinder. The noise begins, not able to move for another 45 minutes; but then, it's over!!

Time to go home, or sit in Boston traffic and eventually make it home.
Over all a very successful day. Now we wait a week before we know the results of todays adventures.

PET/Scan Prep

After a weekend of doctor appointments that keep getting randomly thrown at me, it's the day before the PET/Scan and Head MRI. It's nice when your mom tells you: "people are going to think you're a junky with all those bruises on your arms". It seems as though my veins are better hiders than camelions when it comes to drawing blood or putting in an IV. The nurse gave me this crazy list of preparations for the pet/scan which starts tonight at dinner; it requires me to eat only fried protein. No carbs, veggies, fruit or sugar... so i guess I'll be having a couple boneless, skinless plain chicken strips fried in a pan with a side of plain pan fried chicken - yum! After that, I get to fast until after the three and a half hour process. I'm not allowed gum, cough drops, or anything to get the fried chicken flavor out of my mouth... I'll have the cleanest teeth around by tomorrow, because toothpaste will be my savior!

On a good note for this past weekend the movie: I love you man is hysterical!

Testing

Saturday 3/28/09 11:00am Echo Cardiogram

Tuesday 3/31/09 7:50am PET/Scan (3.5 hour process)
Tuesday 3/31/09 3:55pm Head MRI

Monday 4/6/09 7:55pm Liver MRI

Tuesday 4/7/09 1:00pm PFT/MIP/MEP (breathing tests)
Tuesday 4/7/09 2:30pm Dr. Michaud (pulmonologist)
Tuesday 4/7/09 3:00pm Dr. Huberman (head of surgery)
Tuesday 4/7/09 4:00pm Dr. Nedea (?)

When we found Out

March 26th, the day of the follow-up... I met with the specialist and he told me that the results of the tests proved it to be cancer and that everyone was surprised by this - mostly me. So they gave us a general over view of what was going to happen... we took in a lot of information but they tried not to go into too much detail. So I have a ton of appointments schedule. It seems as though they don't think the shortness of breath has to do with the cancer (it might but they're not sure).. so the plan is: testing my brain and body to see if there are any masses anywhere else, do a series of breathing tests, and other random testing. Then they are going to put me through radiation and chemo (at the same time), which he thinks will be 5 days a week for a month and a half, but I haven't sat down with those doctors yet and they won't know for sure until after all the testing.. so after the radiation/chemo (which they are going to try to shrink the mass as much as possible) they are going to do surgery. This surgery is very risky. I have a thymic carcinoma (thynoma), which is behind my breast bone in between the heart and lung ontop of a major blood vessel (vena cava). Another possible complication (that they won't know until they get in there) is if the mass has grown into the vena cava; if it has then they will have to reconstruct my veins inorder to take out the whole mass. Everyone is trying to stay optimistic, which is all we can do right now.

What brought me to the Doctors

Okay i'm just going to jump in: Evidentally this mass appeared in one of my ct-scans back in July 2006 (when I was very sick, icu, etc). They went in and biopsied it; however when they did so they punctured my lung and to boot the biopsy results were inconclusive. So because all of the symptoms lead them to believe that it was a hematoma (dried blood on top of my vein), they figured that it would "wash away" and seeing I was too weak to go back in and test it again they left it alone and just tried to keep me alive. Well about a month or so ago I started getting sharp pains in the right side of my chest and was having a very difficult time breathing, so I went in and saw my doc (primary), she sent me for a ct-scan and they found the mass (the first time I've ever heard that I had it), my primary referred me to some specialists, so when I went to B.I. they told me that they knew this mass was there and it hasn't changed size (or much at all), which is wierd and didn't suggest cancer or a hematoma. None of my symptoms matched up to any diagnosis. So then I had to go through different tests, an MRI, a biopsy and breathing tests, with a follow-up on March 26th for results.