PET Scan Time

It's almost rude.

It's 8:15 am the day after Christmas; and, once again, I'm forced to focus in on Hodgkins lymphoma. This time it's because I need to be at UVRMC in Provo by 8:45 for a PET scan.

After four doses of Adcetris (brentuximab vedontin), it's time to see if that chemo has done it's job.

I hate how you have to register at a kiosk, by typing in your last name, first name, birth month and day, and the department you need. Then wait in a reception area to register.

So what was that registration at the kiosk? And what was that phone call I answered about three days ago to pre-register?

I have to answer questions over the phone to pre-register, register at a kiosk, and then wait to register again for the final time?

Someone needs to fix this system!

It's also interesting to me that IHC hospitals require a finger poke to check liver function before they'll let you absorb contrast into your body. (To whine for a moment, I hate the finger pokes. I'd rather you draw my blood than poke my finger; a needle stick hurts less than the puncture wound.)

Plus, lately, it's not just a simple poke. They really have to jab deep because they're filling three pipettes (or small tubes) with blood. I know they're also testing blood glucose levels, but diabetic meters are all boasting how little blood they require these days--less than a drop.

So why three pipettes? Why the deep stab? Why the 2-3 minute process to "milk" my finger and squeeze all the blood you possibly can from the end of my nerve-damaged finger?

Luckily, the first part of the process goes fairly smoothly: access the port, inject the radioactive sugar, dim the lights and have me recline in a chair and wait 70 minutes while occasionally drinking about 16 oz. of oral contrast.

As I'm resting, I'm trying to count how many PET scans I have thus far in my life: at least 4-5 in the portable trailer at American Fork Hospital, at least 2 at Huntsman, one at the hospital off 5300 South in Salt Lake, and now this one at UVRMC. At least 8 total, and I'm pretty sure I'm forgetting at least two. Whew!

From all of those PET scans, I'm getting really good at judging how much time has passed while I'm resting and waiting for any cancerous lymph nodes in my body to absorb the radioactive sugar. Try it. If you're forced to rest in a dim room and do absolutely nothing but sit and wait, can you judge when 60-70 minutes are up?

Time for the CT and PET scans. Nothing new there either. Lay down on my back on a narrow hard table with my head in a strange foam pillow, arms above my head, stay absolutely still as the machine does 2-3 quick passes for the CT scan without contrast, then continue as the machine starts at my knees and spins about five minute, then moves to the next position (for a total of five different positions) until about 30 minutes have passed, then inject the IV contrast (that makes your lower abdomen feel very warm--like you've wet yourself) and wait for another 1-2 quick passes of the CT scan with contrast.

Ta-duh! Unhook the contrast tubing, flush the port, de-access the port, and you're now free to leave the premises with no hint as to any results.

Isn't modern medicine fun? lol

Purple War Montage

Some of my dearest neighbors put a montage of pictures from the Purple War Fun Run and parade entry. How did they know that Rascal Flatts is one of my all-time favorite bands?

http://www.facebook.com/l/9AQF1X8kMAQGBRNCftS82iP5kxFZXLJJnybUut6eqUM0MZQ/www.youtube.com/watch?v=EGLHlPXCCAM

This morning was the Cedar Hills parade, so Dad, Travis, Braden, and I got to ride in a white, horse-drawn carriage that Shawn Warenski hired for us as part of the Purple War campaign and bake and craft sale.

It was fun.

We threw out two full bags of hard candy and small packages of Skittles, Nerds, Twizzlers, and other treats--over 13 pounds of candy, and it lasted only the first half of the parade. By the second half, we didn't have any more candy to throw out to the kids. Sad!

I'm exhausted from this entire week and sunburnt, and now get to teach the Relief Society lesson on temples tomorrow.

Time for a nap!

Cedar Hills Fun Run and Second Daily Herald Article

Here's the second article in the Daily Herald about Thursday night's Fun Run:

http://www.heraldextra.com/news/local/community-raises-money-for-woman-with-disease/article_300e0285-cab6-51f4-9e47-555ea1de1ced.html

Thursday evening was the Cedar Hills Fun Run, and all proceeds were for me. Most people wore purple too.

I think that Ronnie Proffit said they raised about $1200 that night. Wow! And it's all being matched by an anonymous corporation.

 

New Front Door

I got home from talking to Drs. Tandar and Patel about the possibility of open heart surgery to replace my aortic valve, which was VERY stressful, to a new front door.

I'm talking to Tangela on the phone as we pull into our cul-de-sac.

When we're almost in the driveway, I notice that our front door isn't white anymore. Instead, it's a beautiful shade of purple. Momentarily forgetting that I'm still on the phone, I start yelling, "Oh my! Our door is purple. It's beautiful."

Tangi, listening, says, "It is? Really?"

I don't know what I hear in her voice, because I'm immediately aware that she doesn't sound nearly as surprised as I am.

"You don't sound surprised, Tangi."
"Really?"

Suddenly, there's a loud noise at the passenger door of our car, where I'm sitting. It scares me so much that I jump (and scream again). Poor Tangi is really getting an earful during our conversation.

It's my sister, Tiffany. My sisters are sneaky and quick. While I was at the doctor's, they painted our front door.

Thanks, Tangi and Tippy :-)

And the door is beautiful! The paint color is named Bella. How appropriate and just in time for the Purple War fun run on Thursday and bake and craft sale on Saturday!

Article in The Daily Herald newspaper in Provo

Check out this link: http://www.heraldextra.com/news/local/cedar-hills-residents-declare-purple-war-for-neighbor/article_ad23cfdf-26cb-5ee3-a724-f1e412ff7e82.html

It's absolutely amazing that I'd ever be in the local paper!

No Dr. Jay This Time

I decide to go into work on Monday morning, because I agreed to cover for my team. Cancer or not, I'm a person of my word.

While I'm at work, I'm trying to navigate how to set up radiation appointments.

So Corrine from Dr. Jay's office is back in the office and relays this unfortunate news: since we now have Blue Cross/Blue Shield insurance, Dr. Jay isn't a covered provider for them. He's only an IHC (SelectHealth/SelectMed) provider, so I need to contact the nearest radiation oncologist--in Provo!

I immediately put in a call to the Radiation Oncology department at Central Utah Clinic in Provo and leave a message.

About 11:00 am, I haven't heard back from Provo, so I call again. Finally I get through to the receptionist who tells me that the soonest that she can fit me in is Friday afternoon. Really? Are you kidding me? I know how scheduling goes and know that there is room in their schedule sometime before Friday.

The waiting game is the worst part for me. When you know you have a serious medical condition and you know what the next step is, why do you have to wait for it?

I decide I can't handle waiting, so I call the receptionist on her statement. "Really? There are no possible appointment times from Monday afternoon until Friday afternoon? With two doctors in the office? Are they on vacation? At a conference? Surely, we can take the next step without having to wait until Friday? I know how this goes. This will be my third time getting radiation and it's my fourth time dealing with Hodgkins lymphoma. Isn't there something we can do to move things along?"

She bristling a little, but then starts explaining that Dr. McAllister first needs a referral from Dr. Wendy. Then, he needs time to receive all of my records and time to review them, so Friday is probably the first chance he'll have to get everything he needs.

"It's okay; I understand what you're telling me. What can I do to speed up the process? I'll hang up now and make sure Dr. Wendy's office calls you immediately. What else? What records does Dr. McAllister need? I'll get them and hand deliver them to your office if it will help."

So finally acquiesces that if they get the referral call and if they get my medical records faxed over from Dr. Wendy, she can fit me in on Wednesday. Whew! One obstacle down.