Thursday, January 21, 2010

Alert!! Nationwide Shortage of Radioactive Agent!!

I met with the radiation oncologist yesterday. Craig was with me for the appointment that lasted nearly three hours. Three painful hours. Between the physical pain of being examined (I'm not sure why it hurt so badly) and the psychological pain of disappointment, I was wasted after three hours. Craig was a rock.

We talked about what radiation would involve. I'll go in for a quick CT scan of the chest and they'll tattoo marks on me where they want the beams to go. I'll lay in a mold created for my head, shoulders and back so each time I go in, I'll be in the same exact position. Each treatment takes about 15 minutes. Side effects are minimal.

So, this I expected. I thought she would talk about the radiation and side effects, duration, etc. I did not expect a delay in getting started.

I have to take a side track here for a moment so you understand what it is like to have so many doctors working on me at the same time.

------I get information about test results, plans, and other things from the other doctors who didn't come up with the plan or order the tests. Let me explain. A week ago Monday I went to my surgeon who informed me that it was okay for the oncologist to get started on the plan for radiation and chemotherapy. I said, "okay." I didn't know the plan was to have the chemotherapy for sure. It had been suggested as a possibility, but never confirmed. The next day I saw the oncologist who notified me that the surgeon had removed two, not one, cancerous tumors from my chest. Really? Yesterday, the radiation oncologist was concerned about my elevated ACTH. I had heard it was still there, but didn't know it was elevated. My endocrinologist said he wasn't concerned about it at the time, so I wasn't. Now, we get to it: the psychological disappointment.------

The radiation oncologist spoke with radiology, my oncologist, and my endocrinologist while I was in the patient room with Craig. This is why the appointment lasted for so long. She had paged them all and spoke with each about her suggestion for a plan. They all agreed. Why radiology was involved in the conversation is because they were the first, next step in my treatment. I have to get another octreotide scan. Yes. This is the same radioactive scan that made me sick last time. I only remembered how horrible the second time was this morning on my way to school.

This is how it works:

Day 1 -
2:00 p.m. Octreotide (radioactive agent) injection via IV
4:00 p.m. begin eating/drinking only fluids (including a lovely sparkling lemon flavored laxative)
6:00 p.m. liquid dinner and 3 laxative pills
10:00 p.m. insertion of "other" laxative
Nothing after midnight

Day 2 -
10:00 a.m. 20 minute scan
1:15 p.m. Pick up 2 bottles of contrast from x-ray and have placed in fridge in Nuclear Medicine.
1:30 p.m. Three 45-minute scans (chest, abdomen and pelvis) with arms laid above head. Very painful position, even with support like pillows. Luckily the use of an iPod is okay.
3:00 p.m. Begin drinking contrast, one third of a bottle every 20 minutes. (Yes. Your calculations are correct. This is impossible since I am laying on a table being scanned when this is supposed to be occurring.)
5:00 p.m. CT scan of chest, abdomen and pelvis. Use of IV for pushing through another form of contrast during the scan.

The first time I had this done, I cried for the last half of the radioactive scan. The second time, I was successful at falling asleep for portions of the radioactive scan with the help of my iPod. However, I was wasted. I didn't finish my contrast. Instead, I rushed to the bathroom in the Huntsman Radiology Clinic and threw up in the toilet. A public toilet. Gross beyond gross. It is one thing to throw up in your own toilet at home, but in a public toilet is just disgusting! I hadn't done that since I was a kid I think.

Anyway, I haven't had the best experiences with this test and I can honestly say that when the radiation oncologist told me that I had to get this done, I was thoroughly disappointed.

She also found out that there is a nationwide shortage of the octreotide agent. The radiologists hope to get some soon, but they have no idea when it will arrive. I should know in the next couple of weeks if it will be available. If it isn't, then we will proceed without the scan.

The whole point of the scan is to find a concentration of ACTH creating cells. Since radiation is directed at specific parts of the body, they want to make sure they are optimizing the beams radiation to the right places. Unfortunately, this also means I have to wait to start the chemotherapy because the chemo might skew the results of the scan. This means, at this point, I will not start any therapy at all for at least three weeks. This also means that my therapy will run into the time of graduation. This is the most disheartening of all.

I had such a vision of what it would be like to graduate. It seems like lately all of the things I have been looking forward to - at least my view of how they would be - are changing before my very eyes. It's not like I won't graduate still, but it just won't be the same. I hope I have the energy to walk across the stage to pick up my fake diploma. I would like to walk across two on May 7th, but I'm not sure I'll have the strength. Of course, knowing me, I'll ask someone to just drag me across or put me on their back to hoist me across, like a finish line. That is what graduation is like for me - a finish line. At this point, it isn't about winning the race, just finishing. I'm going to cross that finish line on May 7th. I promise.

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