Night and Day

I didn't write about this yesterday, but after our visit with Dr. K. at the hospital we were at, I left with an overwhelming feeling of doom.  Not doom for Donny's life, but more like an intuition that was screaming in my head, "get out, get out of here now!".  First, we walked into the small waiting room that was so crowded there wasn't a corner to stand in.  Then, we waited for almost 1 hour to see Dr. K., who by the way, never called us to tell us the official results.  The appointment was fine, as mentioned in my earlier post, but then we were sent on a wild goose chase to get Donny's medical records.  For the appointment at Northwestern, we needed to get all of Donny's medical records and bring them with us.  We had to go to 3 different departments to get all the information we needed.  Now that doesn't sound like a lot, but this hospital is like a maze and it's dark and dingy and the people at the front desk had no idea where we needed to go.  When we finally got to where we needed to be, the people we ordered the records from looked at us like we were aliens speaking a foreign language.  There was a temp at one of the offices who had no clue what we were trying to order.  Basically, it was a nightmare and I wanted to jump out the window.

I joked withe my mom that night that I made her angry face because the second we walked out of that place, I looked at Donny, pursed my lips and through my gritted teeth said, "we are NEVER coming back here again."  I think I surprised Donny by my reaction, but the anxiety and dread I felt over staying at that place was overwhelming and upsetting.  Sometimes you just have to trust your intuition.  And I know Mrs. Gel was on my side because she was shaking her head in agreement.

Last night I didn't sleep well.  The feeling of doom just wouldn't leave me and I kept waking up to check on Donny who slept like a baby.  I think we've been taking turns sleeping well.  One night I'm fine, he's not, the next night he's fine and I'm not.  It's weird how that has been happening.  But I knew that we were going to Northwestern today so I think I was a little anxious about that too.

Today, I got to work early and it was the longest two hours of work.  All I wanted to do was go to this next appointment because it just had to be better than the day before...it had to be!  And you better believe, it was like night and day!  THANK GOD!  I feel like a huge weight has been lifted off my shoulders.

Heaven on Earth
First, door to door (from my office to the doctor's office), in bumper to bumper traffic, and having to park 8 stories up, it only took us 25 minutes to get there.  Although, it was a pretty long 25 minutes because Donny, his parents and I all drove in one car and all our nerves were on high alert.  So between people in front of us who can't drive, Donny and I giving Mr. Gel directions, and trying to find a place to park, it was an interesting ride to say the least.  I have to say though, I think Donny was the least nervous of the 4 of us.  He has been so strong through all of this, I think he's had to comfort us more than we've comforted him.

Second, we walked into the office on the 21st floor and were greeted by three lovely receptionists.  Donny checked in and was given a buzzer and a purple folder.  The buzzer had a number on it that would be called when they were ready for us, but just in case we didn't hear them call us, the buzzer would go off.  The purple folder had a description on the front of what we needed to do with this folder.  Then on the inside, there was another description about all 4 forms that were included.  These weren't forms like we're used to though, all of Donny's personal and insurance information was already printed (from a computer) on each form and he didn't have to fill out anything...he simply had to sign in 4 different places.

Third...well I could just keep going and going.  The place was spotless, organized, friendly, had a BEAUTIFUL view of Lake Michigan, everyone was professional and even though it was crowded, it somehow managed to feel personable.  So again, like day and night from the day before.  In fact, it was so wonderful that my feeling of doom turned into a giddy joy.  I felt like a little kid ooohing and aweing at how pristine this place was.

Ok, so on to Dr. P.  Wait, first, one point...yesterday we waited for almost an hour to see the doctor. Today, Dr. P. was in the office talking to us within 5 minutes of our appointment time.  AMAZING!  Dr. P. sat down and asked how he could help us.  Donny explained what was going on and Dr. P. took a look through the blood work, pathology report and CT Scan.

'Large Mass'
Let's revisit my post from yesterday over the anxiety I felt from Dr. K. continuously saying that Donny has a 'large mass' in his chest.  Well...let's just say that he was right.  Dr. P. pulled up the CT Scan, took a look through it and asked for the chest CT Scan.  We all looked at each other in confusion because we thought he was looking at it.  Apparently the other hospital only took a neck CT Scan.  We told Dr. P. the story about the 'large mass' that Dr. K. kept talking about.  So Dr. P. scrolled all the way to the last slide and found an image of the top 1/3 part of Donny's chest.  He measured the mass and it is roughly 16 cm or 7 inches.  A ruler is 12 inches...take a ruler out and put it against your chest...it's quite a 'large mass' that it covers.  So, I had to admit, that Dr. K. did know what he was talking about in that regard, but it could have been communicated in a better way in my opinion.

Clinical Trial
Anyway, Dr. P. told us that he would be reevaluating everything to give a completely separate diagnosis than what we've already received.  He also said that judging by the CT Scan and the pathology report, he's fairly certain that the diagnosis is correct.  Then, he went on the computer and pulled up a chart to show us a possible treatment plan that he would like to try.  ECOG - it's a clinical trial going on at Northwestern right now and he would like Donny to be a part of it.  (I don't know what ECOG means by the way...sorry).  Basically, what it means is that Donny will go through treatment, but have more PET Scans (full body scans) throughout the process.  He'll get a PET Scan, go through 2 rounds of Chemo and get another PET Scan.  If he reacts well to the Chemo, then they can either continue or decrease the amount of Chemo needed.  If he doesn't react to the treatment, they'll increase his Chemo.  This sounds like common sense, right?  Well, apparently it's not.  A lot of people go through regular Chemo and don't know how it's worked until they are through with 4 - 6 months of Chemo.  So, naturally, Donny and all of us were thrilled and ready to start tomorrow.  Also, I should mention, that because of the 'large mass' (7 inch mass), that Donny will most likely need radiation after the Chemo is done.

We were all anxious to get treatment started, but thankfully, Dr. P. told us that Donny has probably had cancer for a while and reassured us that he doesn't consider Donny's case an emergency.  He said he wants to make sure the tests are reevaluated properly before we rush to any type of treatment.  However, Dr. P. did say that Donny will most likely begin Chemo within 14 days.  So we know, in the next two weeks, Donny will begin his treatment.

Finally, before we left Dr. P. scheduled 6 different things for Donny.  So there I am, frantically writing down what tests I'll need to order and slightly starting to panic because scheduling this stuff is very time consuming. But then Dr. P. said, "I'll put these orders in and the people at Patient Services will schedule it all for you."  I was ready to cry, I was so relieved!!  We sat with Cammy in Patient Services for nearly 45 minutes while she scheduled all the tests for us!  It was such a relief!!!  And in the mean time, Donny got his blood drawn for the blood tests the doctor ordered.  And, the Port-a-cath and fertility people will call me to set up appointments, I don't even need to call them!!  I love love love Northwestern Memorial Hospital already and I am so thankful to all the people who recommended us to go there!

Next Steps
Tuesday, October 30 Donny will be getting 4 tests:

1. TTE Scan (Echo of the heart to make sure his heart is strong enough for treatment)
2. Pulmonary Scan (Of the lungs to make sure they can handle treatment)
3. PET Scan (3D image of the body to make sure there aren't tumors anywhere else).
4. CT Scan of the chest, abdomen and pelvis (Not sure why he needs this and the PET scan, but the CT Scan will also show if there are tumors anywhere else in the body).

Friday, November 2 Donny meets with Dr. P. again for the official second opinion.

In between Tuesday and Friday, the bone marrow results will come in, so we'll know if it's Stage 4 or not. (If the bone marrow comes back positive, it means the cancer has spread and that it's in Stage 4).  Don't worry though, Stage 4 is just as CURABLE as any other stage.  Also, if it is stage 4, the treatment plan will most likely change...to what, I don't know...but it will change.

Today was an emotional roller coaster of anxiety and relief.  And after it was all said and done with, I just broke down and cried.  It's so comforting to feel like Donny is in the right place.  I think we all felt a huge pressure lift off our shoulders because we had found the place that felt right.  Donny even admitted that he feels more comfortable at NMH with Dr. P.

Thank you again to everyone for the love and support.  Donny is blessed to have such wonderful people in his life.  He is so strong that he was comforting me tonight.  I'm very lucky to have him and I'm very thankful to NMH because I know they'll take care of my man :)