4 Scott

Scoop was diagnosed with squamous cell carcinoma, well-differentiated of the right lateral tongue on Wednesday, July 22, 2008 by Dr. Ross Wldowsky. Scoop called his mom around 6:30pm.

Thursday - told people at work, got the freaking run around at MCV, called several people and was not able to get the appointment for Scoop. There is a serious communication issue at MCV and it sucks. Told my Dad.

1. At 10:30am I called Debra, the office manager from Dr. Wldowsky's office and asked what's the status? She said she has not heard from MCV and she has been trying since Tuesday. On Monday, MCV faxed the pathology report to Dr. Wldowsky's office at 4:43pm. Everyone knew it was bad news. I told Debra I would walk over there.

2. I walked into the Massey Cancer Center, picked up some handouts and could not find someone who looked like they were willing to help. The receptionist, whom I paced by was uninterested. I asked the guard where the A.D. Williams Building was. He directed me and I walked into the A.D. Williams Building. The elevators are not air conditioned, one of those old buildings. I arrive at the clinic. The waiting room is full. I remember an older woman with a nose covering, looks like she's had some work done. I go to the front desk and as nice as I can be ask, Scott Scupien needs to have an appointment with Dr. DiNardo. He was referred by Dr. Wldowsky. The lady hands me this card and tells me I need to be triaged. The scheduling nurse will not be able to talk with me today. I see this older woman and I said this is cancer, he is diabetic, we know he needs to get a CT scan. We can't just wait. She tells me some lame response and I said if this was your mother or your father, what would you do? I walked out and I was pretty composed. The people in the waiting room were not disturbed but their ears had perked up.

3. Walking back to the Patrick Henry Building, I run into a landscape person, someone who works at MCV. I said you have got to be kidding me. I can't get an appointment scheduled for my fiance and we know he has cancer and this is the Massey Cancer Center. He advises me to go to Nursing Administration on the 2nd floor.

4. As I walk into Nursing Administration, I run into Shawn and explain the situation. She calls Kym from the ENT office and she calls Debra from Dr. Wldowsky's office. She talks with both parties and makes sure they are faxing information to the right numbers. I walk out and expect someone will call Scoop with an appointment time.

5. I called Scoop around lunch as usual and let him know he should get a phone call. By 3:30pm, Scoop has not called me. I wonder. mmm. Scoop would call me if they set an appointment. Let me see what I can do. On letterhead, I fax two hand-written requests to both offices, Wldowsky and DiNardo. I am very clear and I am nice. Scoop needs an appointment.

6. 5:30, get home, Scoop has not received a phone call. (I am pissed!!) I make Scoop dinner and I go to the front porch where Scoop will not be disturbed and I start calling the MCV after hours line. If they can't schedule an appointment during the day, they are going to hear from me until they set up an appointment. I talk to the first guy and explain the situation. He says someone will call me back. By 7pm, no one has called and I call again and this time I give the person more details. I wait, no call. I call again and this time I have more energy and passion in my pleas to get this person to get me a phone call from someone who can take care of this.

7. Angela Yeng calls me and I do not like her tone. It's like I am an annoyance. She's a resident on-call for emergencies. I explain the situation. Scoop needs an appoinment with Dr. DinNardo. He needs to get in the CT scan line. We do not have time to wait around. Scoop does not need to go to another doctor to be told he has to go for a CT scan. She does not seem to be able to do anything now and we will have to wait. Another person is trying to call me, I am talking with a resident, so I don't pick up. As soon as I end my call with Angela, I check the message. It's nursing administration, she tells me to call back the same number I have called three times. This time I get to the same person I originally called. I might have called this number 5 times. At one point I started crying I could not speak and I really am feeling helpless.

8. I look at my cell phone missed calls and presto, I see a number and I redial. 9 North, she says. Ahh, this is Alison Anderson and I am trying to schedule an appointment for Scott Scupien with Dr. DiNardo. Scott has been referred by Dr. Wldowsky. There seems to be a communication issue and this is why I am calling after hours. She wants to speak with Scott. Fine. No more excuses. He needs an appointment. She says she'll call by 9:30pm. I fall asleep waiting by the phone.

Friday - woke up at 3am. Completed the online forms for the Massey Cancer new patient registration. Received an email from Dr. Wldowsky from 10pm Thursday.

I resist all temptation to send him another email. What is taking so long to get Scoop an appointment with the cancer specialist? The message says Dr. Wldowsky's office will expedite the process first thing in the morning. Debra their office manager was really being proactive. I do laundry, I walk Dino our boxer for a 4am stroll around Whoville. I take a shower, get on the bus, get to my office. Scoop calls me around 8:10am. The nursing administration called, she got in touch w/ DiNardo. In my mind, where/when is the appointment.

It seems MCV just has too many sick people and a very poor scheduling system. By 9am Debra from Wldowsky's office calls, Scoop has an appointment on August 1, 2008 with Dr. Allen Burke at 10:40am. I called Amy, Scoop's close friend and let her know the situation. Someone from the Cancer Center calls me on my way to lunch. The person does not have an articulate voice. My patience with people not taking care of business to set a simple appointment for someone diagnosed with cancer is making me nuts. I decide I can't talk to this person. At 4:20 I visit the MCV nursing administration office to go over why they are not able to schedule a follow-up appointment for my fiance in a timely fashion. The woman is apologetic, but I told her abosolutelyunacceptable.com I told her I have the power of the web and I told her I will not let this issue drop. Cancer is a black card. We need to get him seen and we don't have to wait until August 21st to be told he needs a CT scan. I'm not having it. The woman knows I am serious and she goes to ENT to figure out an appointment time. She advises me to have a normal week. What's normal? Scoop picks me up at 5pm and we go to Legend. We are home by 8:38pm and we sit on the deck and light the torches. At some point I go in and Scoop has a message. Dr. DiNardo will see Scoop on August 4, 2008 at 8am. She says she will call him back to get his home address. Are you people on top of this? You should have Scoop's home address. The online new patient registration for was completed for Scott.!!!

Online appointment request form - Massey Cancer Center i swear to God, MCV has all the information. His full legal name, his primary care dr, his referring dr, the information about DiNardo which they freaking should already have!

Scoop made a comment, "Don't worry, we'll take care of you when we feel like it." We went to bed close to 10pm.

Today is Saturday, July 26. I am going to walk Dino and we all are going to Legend, with Scoop's friends later this evening. we have six days to wait this out until he will be seen by a doctor. betcha their gonna say he needs a CT scan, among other things...Make it happen people, no more dilly dally, cancer is not a rountine to us and we expect proper treatment. Do not waste our time with needless freaking repetitive nonsense. Get to the business at hand and do your job.

monday, 7:19pm. i will not let beaucracy interfere with the chance to get this under control immediately. Scoop and i saw Blake, Amy, and Weel on Saturday. Most appreciated...but that's what good people do. Good friends! Went to see The Dark Knight on Sunday...awesome...loved it! This is so weird...Scoop took me to a new housing development and we looked at houses...like walked into the new construction. I am my usual self, can't stand big houses next to each other...but Scoop was very patient with me and continued to ask me if I wanted to walk in. The first house...not so much...it was ok. The next house...mmmm. THen we went into this other house floor plan...and folks, we're sold. Can you believe it?...we actually agree on a house floorplan and it was not that confusing. Scoop will have his man floor, 3rd floor, crow's nest, with a little window to look out. He wants to set up his trains and all the Buffalo Sabres anything and play hockey TV all hours and he'll need to have a place to crash and probably put his computer and my floor is awesome...no boys, but Scoop gets this room...Dino is all over the place...he needs a special bed on the man floor and the first level amazing with a master bed room and vaulted ceilings and a railing view from 2nd floor. Anyhoo, we dreamed about our new house on Sunday. Realty strikes on Monday and boy, i am on it...you want to know about what i think about web standards...."Ooops." direct quote from Scott Scupien. Well i called his primary care physicians office. Dr. Sarah Meyers saw Scott in May. gave him something for his "allergies." i spoke with this lady, Carol and i told Carol the situation and also about the run-freaking-around at MCV which i am not putting up with anymore.com. She agrees. We need to take care of business. So I am a paper queen. I have downloaded every form I can find and Scoop has homework, although I'm doing as much legwork as possible. This is a freaking task...many forms. Getting medical information sent from one place to next. over it

Scoop is working on his rock wall in the garden. He keeps looking at the floor plan of the dream house during dinner. His right lymph node was swollen by Saturday. Not good. His right check is puffed...he can't notice. I cried but i try not to. He just wants to get some work done in the yard after dinner. I am scared. I spoke with my mother. She was a Vietnam nurse. We both know cancer is not good. no sugar please. and scoop has Diabetes 1. No MORE DILLY DALLY PEOPLE!!!!!!! i will do everything in my power to get his medical records properly transferred from his primary care physician, his dentist, his oral surgeon and i will make sure his paper work is completed. They are really messing with the wrong people. No delays. Make his cancer treatment happen in a timely fashion.

You guys know i am slammed on the web. To do anything like this blog is out of my character, but it's here. Be patient with me. THis ton of bricks just hit and can you imagine what Scoop is going through?

Scoop is not working. I work. Working all the time to get the run-freaking-around by MCV is not right, especially...the Massey Cancer Center. I'm still pissed. Why people do we have to make some idiotic nonsense and not work together and move freaking paper around and call people. If i have to talk about web standards, I will and this my friends, is why I am here. IF anything happens to Scoop because of your let's say lackadasical attitudes, this will not be the last you hear from me. As GOD is my witness, not following web standards is very connected to the communication issues at MCV and between the various doctors and you know guys, at this point...i do not have time to explain why all this BS is not set up properly. But it's not. During my day job, I discuss this matter quite frequently. In this case, not following web standards can be blamed for the whole issue with Scoop not getting a timely appointment. We know for a fact he has cancer. We know he needs a CT scan. We know he needs blood work. We know he will need surgery. THis is not a cup of coffee for me or Scoop. OMG. I wipe myself clean of the evil in society and man's law. I am living for GOD, always have and always will. I am here for a purpose and you people will LISTEN!!!! this is not complicated...follow the freaking web standards so i don't have to continue to rant. Scoop OMG if anything happens you people have no clue.com

Wednesday, July 30...took the day off and got his medical records and we will be seen tomorrow at 9am by Dr. Allen Burke. This is not good. I am absolutely scared and I imagine Scott is horrified. this is serious

6:55am...this is f'ing bananas. i called

http://www.cancercenter.com/integrative-treatment.cfm - if i have to we will get Scoop treated here

Dr. Alan Burke....we are counting on you!

4:25pm positive news. we saw Dr. Alan Burke and Scoop immediately connected. He got right to business and Scoop mentioned on the way out...he was writing on his tablet. this guy has it together visual inspection ...it's nasty squamous cell carcinoma manual inspection see some relief...we have an anatomical boundary maintained...tip of tongue good base of tongue good. tip is for speech and base is for swallowing. now scope down Scoop's nose; Dr. Burke numbs him and then 10 minutes later inerts the scope up Scoop's left nostril to see down his throat to look at his tongue....all clear down the throat...good news. isolated but you young guys get priority we need to move this along. let's get a biopsy of the lymph node i mention we are T2 Nx Mx; Scoop's node was popped over the weekend, Scoop says Sunday, some swelling noticeable. Burke asks and we agree; pathology coming up and we are moving to the sophisticated room. Scoop needs to go to the bathroom. On my way back, I see Dr. Burke and the conversation begins, do you think you can handle this case. We have an appointment with Dr. DiNardo on Monday at 8:00am. Will you be able to manage his diabetes? Burke is on vacation August 12-22. He mentioned doing surgery next friday 5-10pm...too much and Scoop would be left to fend for himself over a weekend. We want what's best for Scoop and we are relying on you to get our diagnostics run and if you can help us move this along. He wants to talk to Larry. i say Dr. DiNardo's on vacation. We have his first appointment at 8am the day he gets back. Scoop comes back and we all talk and this gets tough...we have to talk about the surgery and the head and neck dissection; Scoop will lose a third of his tongue; it will be ciclical. We wil have surgery within the next two weeks, probably not next week, but the week after. We go to the other room....sit awhile. Dr. Mark Williams comes in and gets to business and explains what he is going to do; he verifies Scoop's identity; asks why he is doing the procedure and this was hard to watch...he pops Scoop's lymph node and moves the needle all around to gather a sample. Scoop does real well and i am very proud of him. Scoop says that was not so bad, but guess what...Dr. Williams is going to make another pass which means swabs with alcohol; this will hurt and inserts the needle in again, same lymph node, same spot, then out comes the needle and Scoop says he does not feel so good; we lay Scoop down. i run to get some orange juice from Tara at the nurses's station. Scoop says yeah, that's not helping...i don't feel any better, then the straw has a leak in it, so it was hard for Scoop to drink it; i stay quiet and we chill out a bit; the doctor is cleaning up and Scoop is laying there and i talk nice to Scoop but he does not look good at all; all of the color went out of him and he did not look good to me at all. after some time, the doctor leaves and i surf a bit on the Internet and talk to Scoop while he relaxes. Dr. Burke comes in and gives Scott some prescriptions and mentions he'll be going to Buffalo for vacation. The CT scan is tomorrow we have to be there at 7am. Pathology report coming tomorrow afternoon. Scoop really likes Burke. This was a scary day, but overall we both feel more positive. We went to lunch at Home Team Grill and Scoop did his down town look at all the new construction. We got his prescription filled at Ukrops and Scoop found the best M&Ms - rasberry w/ white and dark chocolate. Dino missed us. thanks for listening, praying, reading, this is tough.

Make no mistake. Scoop is sick. he is very very sick. I found him in bed before 8pm. He told me he was cold. I turned off the fan and covered him with my blanket. What repetitive words...this is serious folks.

What have we done to Scott. He is now in bed and he is cold. OMG did we make a mistake doing the lymph node biopsy? i hope not...but you know what i am not just signing off on a head & neck dissection....you have got to be kidding me...they want to slice Scoop from ear to chin...i say absolutely not...why? why do they need to do this? and if we have biopsed the lymph nodes path report tomorrow we'll see. i'm not handing scoop to the butcher...no way...scoop is not a science experiment....no.

Saturday, August 2, 2008 yesterday went to St. Francis for CT scan. The place looks like a hotel. Kelly helped get us a disc of the CT scan...248 images. Scoop was first procedure in the morning. We went to breakfast at IHOP. Got home, Scoop and i looked at his CT scan. I spoke with the chief resident Dr. Travis Shaw. I spoke with a helpful woman. the person who answers the regular massey cancer center line needs an attitude adjustment. she should not be answering the main line with that non-compassionate manner. ENT phone lines are absolutely USELESS. I completely broke down talking to Tara, Dr. Burke's nurse. I called Scoop and let him know about the neck dissection procedure. Dr. Burke called Scoop at around 6:30 to let him know lymph nodes are positive. Dr. Burke explained the required head and dissection procedure; however, we do not know the exact type....radical or what?

Scoop actually woke me up he was uncontrollably crying and for him to have stirred me ...Scoop was not happy at all. I was soo exhausted from yesterday...i crash pretty hard and don't wake up early...this was like 11:30pm...Scoop was soo sad. I am soo scared for him too.

We have had breakfast...we are staying quiet today...i suppose. there is a distinct odor now associated with this cancer on Scoop's tongue.

Stage III T2 N1 Mx...Scoop's surgery is within the next two weeks, we know that unless something comes up and Scoop decides to wait for Dr. Burke...which i don't think we can Dr. Burke is going to Buffalo (can you even believe it> August 12-22). Dr. Burke has spoken with Dr. Travis Shaw and Scoop is in within two weeks. We will walk out of MCV on Monday with a treatment plan. None of this is good news and I want to be positive but you have got to be kidding me, how did this all come down on Scoop like this? I am so devastated for Scoop. He is being a trooper but you know he's got to be i have no idea.

6:40pm

I did not go to Max's 2nd birthday party and I feel bad. We have a Darth Tator to give to Max. I drove Scoop to FarmVegas...we went to Macadoos for lunch...he had a Chicken Blue Boo and i had the Macadoo. We looked at Longwood University and drove around Hampden-Syndey College and then we drove by a place Scoop helped designed....the Manor...it was kewl a road Scoop designed.We did talk about money and draining his 401k plan. Why does he need to wait until he is 65 to spend his earned money? On our way back to Richmond, we checked out the new home model for a dream house. We are both sold. It's perfect. $625,000 for what we were looking at...Scoop wants a better back yard ...well the same yard we currently have with this new house will work. For dinner, we had Spiderman mac & cheese, baked chicken and broccoli, carrots, cauliflower and cheese sauce. Dino knows we are sad. But Dino likes his Frosty Paws.

$25 donation for Scott Scupien's cancer fight

$50 donation for Scott Scupien's cancer fight

$100 donation for Scott Scupien's cancer fight

Monday, August 4, 2008 15:33

This is serious folks. PHAT TIMES is dedicated to solving medical issues. We are not giving up. EVER!

Resources:

American Cancer Society

American Diabetes Association

Christopher and Dana Reeve Foundation