Decisions, decisions

Well I'm getting an MIBG scan this week. On Monday, I will go to Penn, and they will give me some iodine drops to protect my thyroid. Then, they will inject me with a tiny amount of a radionuclide tracer. Then I go home. Then I go back on Tuesday and lay on the table for a few hours to see where the MIBG goes. If my tumors are MIBG "avid", then I will be a candidate for MIBG therapy...where they inject me with lots of the radionuclide tracer. Then the tracer will go to my tumors and beat them up.

But Kristin, what about chemoembolization? I thought that was the next step? Me too, sista, me too. But apparently, we need to take a more systemic approach at this point, and not worry exclusively about the liver.
Apparently I have this "seeding" on the outside of my intestines. According the the path report "innumerable tumors" on the outside of my intestines. And my last Oscan report referred to this as "peritoneal carcinamatosis."

Back when I was first diagnosed, and having cancer seemed glamorous, I used to spend hours reading my MRI and CT and Octreoscan reports. "Hmmm. 2mm nodule in the lung? Better keep an eye on that." "4mm round hypodensity in the kidney? That doesn't sound good." "Sigmoid diverticulosis? Better look that one up."

But lately, when I get a scan result, my Onco says...."everything looks stable" and we move on. I glance at it when I get home, but push it aside and don't think about it. I had really been ignoring this whole peritoneal carcinamatosis thing.

But last week, I had to compile some scan reports to send to Kenner for a second opinion. In doing so, I had to read the reports so I could formulate a question to ask Dr. Woltering. You see, at my most recent visit with my program coordinator (known as Dr. Doom and Gloom), he pulled some unexpected punches. I'd been ignoring chemoembolization for the last 4 months, but this visit was about discussing next steps...chemoembolization being the next step. Chemoembolization was the drum these guys had been banging. Imagine my surprise when Dr. Doom and Gloom said he "was not sure there was a benefit in that right now." Um.....okay.

So, that leaves us at MIBG, and if my tumors aren't avid, it leaves us at PRRT. So at least I've already been accepted into Houston if MIBG is a no go.

Decisions, decisions.

And wait til I post the procedure for getting the MIBG therapy...5 days in the hospital til my radiation levels go down?!?! OY!

I can never remember from shot to shot if I have side effects on the day I get my shot. So I’m gonna post here today, and say yeah, I’ve got some muscle soreness and fatigue. Plus, I can tell for sure that my stomach is gonna have a rude awakening in about 30 minutes. But I woke up with a blinding headache and nausea, so I can’t blame those on the shot.

In other news, I’m off to school tonight for the first time since last spring semester. Yikes! Given my recent dearth of human contact, I feel sort of bad for the other people in my class. I noticed that when I go to my doctor’s appointments I tend to talk a lot, and fast, due to lack of human contact! So classmates beware: a woman who needs to talk is on her way to your classroom right now!

My bumpy ride begins...

So wait, medication isn't the answer to all my problems? Medication has side effects? Aw crud.

Had a rough week. We had a visit on Wednesday to my main onco at Penn and follow up with surgeon at Penn on Wednesday. All went well, except the part where we set the date. GULB! I've really only cried twice during all this. The first time was when I got the results of the CGA tumor marker test. The second time was when they set the surgery date. Things get a little too real when you put a date on something!

Anyhow, following our Big Day at Penn, I came home and took a nap. I woke up with gallbladder pain which lasted all night and resulted in a trip to the ER Thursday am for fluids and an abdominal exam. Sadly, they performed an ultrasound, which is the most invasive non-invasive procedure I've ever known. I should have refused it, but lack of sleep, hydration and caffeine had my defenses down. My liver and gallbladder are still bruised from the tech ogling the tumors on my liver. Their prognosis? The tumor on my liver is still there. Well duh and thank you very much. Honestly, without the ultrasound, I would have been better sooner. As it is, I haven't been to work since Tuesday, and am thankful I was actually scheduled off this weekend so I could recover.

My original plan was to hang with Rod for the weekend, but he had other plans, like going to see the Dave Matthews Band Caravan in Atlantic City. So we had to call in Douv to come babysit me for the weekend. It was pretty sad, as all I did was sit on the couch on watch stupid movies and TV shows. Poor Douv, driving 5 hours to be with the laziest person ever! By Sunday night, even I was tired of sitting on the couch....me, who loves to laze around all day long! We did make a few excursions, like Wegmans for food, and Whole Foods for a few minutes, and Barnes and Noble so I could buy a kit to crochet small animals. I'll need some way to pass the time!

Well, it's back to work tomorrow. A six hour shift. I hope I can make it. At least all this time at home has helped me perfect the art of injecting these damn shots. Gonna have to give myself at least one at work tomorrow. Wish me luck!

Also, a word of thanks. I just wanted to say thank you to everyone who has offered words of encouragement, cards, flowers, texts, phone calls, time, jokes, hugs, care and concern. You know I'm not the touchy-feely type, but I really do appreciate every single gesture that's come my way!

Well that went as well as could be expected.

This is my underarm right near my armpit!

I headed over to the doc today for my first octreotide shot. They injected it into the back of my arm, right where I couldn't keep an eye on it. It burned a bit going in, but I suppose that's normal. After the nurse injected me, she showed me how to inject myself using an orange for practice. After we finish injecting the orange, I tell the nurse that it still burns a bit. She checks the injection site and says "Uh oh, you're having a reaction, let me go get the doctor." She comes back with the doctor, but I've already reached into my bag to grab an ativan to help me stay calm. I figure my sensitive skin is just overreacting. The doctor asks if I'm having chest pain, which I tell her I am not. They mark a circle on my arm to mark the advancing rash and keep tabs on it. They take my BP, which is an astounding 191 over 101! Whoa!

They tell me I need to stay 30 minutes for observation, and I tell them I'm going to listen to some relaxing music to chill me out. I was pretty relaxed about the whole thing, I swear. I was trying not to panic, because once I panic it's all over! After 30 minutes, my rash goes down and they say I can go as long as I am feeling fine. I get up and walk around just to make sure, and yep, I seem fine. Now let me explain, anytime I am sitting for 30 minutes and then get up and walk around, I have a flush. But no flushing!!! WHOA!

Then, I drive home and walk up the stairs while holding two bags....no flushing! WHOA! After I left the doctor's office, I thought I felt weird from the medicine, but then I realized that I actually felt normal! It's just been so long since I felt normal that I had forgotten what it felt like! WHOA!

Then when I got home my Hibiscus that was just a big bud this morning had opened into a flower! WHOA!

!

I can't make this stuff up.

So, I get a call from the onco today saying I can pick up the prescription, so I head over to pick it up. Then I head home, make a copy of it, and head off to CVS. Instead of just handing it in and walking out, I ask them if they are able to get it. One girl hands it off to the other girl who proceeds to start checking on the computer. After about five minutes, the computer girl says "I can't believe this, now this one is out of stock too. This dose was in stock last week, but now it isn't." I ask if it is available in a generic that might be available. She clicks around, and finds that it's available in a .1 mL dose, but not the .2 mL that is on my prescription. She says that she can call the doc and see if he'll let me switch to the .1 mL. She says she'll call him and call me later.

I go home, and she calls a little while later saying that the doctor was able to change the order and she can get it and I can pick it up tomorrow. Okeedoke. Now I get to inject myself with 6 needles a day instead of just 3. Yay.

But hold on. I get another call a few minutes later. She went to put the order in the system, and their distributor will only allow them to order a certain amount each month. This order exceeds that limit. However, she was able to call the CVS down the street and have them order the other half of the order. She will go pick it up when it comes in and I can pick up the entire order on Friday. We have a good laugh about how this seems to be the hottest drug around!

Can you believe that it has taken me this long and three prescriptions to get this drug? And really, I don't have it yet so let's keep our fingers crossed!

No news is no news

I googled "sneaky" and this is what came up. ???

Still in limbo on the octreotide, but remember, I have a sneaky appointment with another oncologist on Friday and have my fingers crossed. Off to Penn tomorrow to drop off my specimen (too much information?) and see Dr. Soulen, the radiologist. Wish me luck!

soooooo.....

So my onco's office called me back around 3:30. Turns out she is on vacation this week, but they've read the note I left for her and are going to try and get the prescription for me. They call back a few minutes later to confirm that I am going to go with their prescription, and not the Penn description. I say yes, I am going with them. No matter what. They call back a few minutes later to tell me the other onco in the office is going to write it, and to confirm that I am going to be self injecting other than the first dose which will be in the office. Yes and yes. That was the last call I had, so hopefully they are speaking to the other onco and I have a feeling he is going to want to see me before writing the script. Maybe we're making progress here, but I don't want to be too optimistic.

I have a busy day tomorrow. Set alarm for 6 am so I can begin my 24 hour urine test for 5-HIAA. Google that one if you want to see how much fun it is. After that, I need to head over to Paoli Hospital to have some blood drawn to test my neurokinin-a and pancreastatin levels. After that, I have an appointment with my primary care physician to just check in and update her on what's going on. At one point I was dropping off requests for her every day, and the last time I was there they set up a sort of "preemptive" appointment to stop me from bugging them every day. I just love them there! After that, I expect that I will stop by the onco's office just to see if they have a prescription for me.

After that though, who knows, maybe I can relax on my day off! But probably not.

And the drama continues...

So I get a call today from Penn in regard to a question I had about their dose of octreotide. They say that since I am having trouble finding the subcutaneous (short acting) version, I can just start on the LAR version. LAR is long acting release, and from everything I've read (and I've read a lot. a lotalot) you are never supposed to start the LAR without doing at least 2 weeks of the subq. Imagine if I was a regular old patient who hadn't spent the last 3 months educating myself about this disease and all its foibles? Mamma mia!

So then I call CVS to see if they can just reactivate the script that I handed in from the oncologist last week. They check their computer, and they have no prescription at all for Octreotide, from either doctor. So now I'm back at square one, exactly where I was last Monday. No Octreotide and 20 flushes per day. Good times. I have a call into my onco to see if she can re-prescribe, but who knows if she is even still speaking to me after I dropped her first script like a hot potato after seeing the guy at Penn.

Fingers crossed for some good luck today.

11 days since my last post?

Well let's see what's happened in that time? I visited an oncologist who prescribed Octreotide. I visited a GI who prescribed Octreotide. Yet, here I sit without any Octreotide. Why? Because while the one prescription from the oncologist was waiting to be filled, the other script was sent through electronically, causing CVS to call me and ask which script I wanted filled. I told them to fill the second one, since they said they were waiting for some more info from the onco.

However, it turns out that the script from the GI was perhaps the wrong dose, they couldn't find that dose and my insurance company wasn't all about it, and I was going to have to pay 1500 dollars for it (which I would have gladly done). The script was even on the CVS website for a few days, saying "on file" while they tried to find it. But then it disappeared and now I have no scripts for medicine that I pretty desperately need.

On top of it all, I'm afraid that I insulted the onco by choosing the script from the GI. Ultimately, her script was right, but I may have pissed her off.

So now I get to spend the next few days trying to get a prescription from someone, anyone, please!

An all too familiar look for me.

Rod took this right before my MRI. It's a loverly shade of pink, and I barely even recall the picture being taken because I was so nervous.

Good times in the ER.

See how smart I was to wear my pajama pants? And they almost matched the hospital gown!

Every day is an adventure now!

Well yesterday I decided to get off my butt and go out to target since it was my day off and I needed a few things. However, my car had been sitting in the parking lot all day just getting hotter and hotter. For a normal person, this would be no big deal. Thinking I'm normal, I just get in and drive to the target (there is a new one about 7 minutes away).

By the time I get there, I am having a flush and palpitations and generally feeling crappy. But now when I feel this way, I get sort of panicked too, like something could really be wrong with me, because frankly, something could really be wrong with me. It all snowballs into a bad thing.

I get to target and I'm trying to park so I can run in to the cold air. Dude in front of me is driving so slow that I panic even more. I finally go around him and park in one of the handicapped spots and put my flashers on. I run into the store, fairly certain that I am going to pass out, but I just want to pass out in a public place so someone can call 911.

I'm lightheaded and drymouthed. I head to the water fountains not for a drink but just to get some liquid in my mouth. I compose myself for a second and call Rod to come pick me up because I can't drive. I wait a minute or two more, then head out to my car to move it from the handicapped spot. As soon as the heat hits me though, I think better of it, thinking the same thing will happen again. I turn around to head back in, and a lady with a child in her cart says, "can I asked why you parked in the handicapped spot?"

I say "I was having a carcinoid attack and I was afraid I was going to pass out." "What does that mean?" "I have carcinoid cancer, and I have these tumors on my liver, and they release hormones which make me feel like I am going to pass out. I already called my boyfriend and he is coming to get me. I was coming out to move my car but I thought I was going to pass out again so I was going back in."

She was pretty much stone faced the entire time, as tears are streaming down my face while I try to explain that I would never park there but it was an emergency. She finally said, "okay, go back in the store" but I'm pretty sure she reported the entire situation to the police.

Anyhow, Rod comes to get me and we head back home, but I just wasn't recovering well. I felt woozy, nauseous, anxious, restless, basically just not right. I started telling Rod all the things he would need to tell the people at the hospital in the event that I passed out. "Give me this med, but don't give adrenaline, call this doctor for further instructions, etc, etc." Then I tell him to put his shoes on and get my stuff ready. Then I start acting like I don't want to go to the hospital, procrastinating for another 30 minutes to see if I would feel better. I didn't, so we went, and as usual all my vitals and bloodwork is normal so basically there is nothing they can do for me.

I need to be on a drug called sandostatin, but I can't get anyone to give it to me! The Doc at Penn will eventually give it to me, but in the mean time I can barely leave my house without fear of such an event happening.

BLARGH!!!

Just a day, like any other day.

Except today at 1:15 I have an appointment with my doctor to discuss the results of my Octreoscan and my CT scan.

Those of you who know me and my doctor know that she is not a fan of calling me promptly. I finished my scan at 8:30 am. My doctor's office called at 4 pm....less than 8 hours after I finished my test...to tell me to come in on Friday for an appointment.

I'm thinking it's likely bad news, but who knows. I'll keep you posted.

Octreotide Scan!

Went for my radioactive injection this morning. Have to go back at 3 for them to take the pictures.

I was talking to the lady who is doing the study, and she's like, "Okay now, where are we looking for these tumors?" I was like "I don't know, I had a CT scan but my doctor wouldn't give me the results." She was like "WHAT?!?!? I would be very annoyed about that! How are we supposed to know where to look if she hasn't told you anything!?!?!" LOL. I told her look in the liver and intestines, that was most likely.

She was also quite impressed with her needle stick, to the point where she drew some blood into the needle and was like "WOW! Look at that great blood return!" I'm like, no thanks!

Good times!

CT scan

Had my CT scan this morning. I had to drink some Barium, which wasn't quite as gross as I thought it would be. Actually, it was totally gross, but I didn't throw it up so I think that's why it wasn't as bad as I thought it would be. Man, you really have to drink a LOT of that stuff.

Anyhow it was early, and I had a few flushes while drinking it, but nothing out of the ordinary. Toward the end, I got up to go to the ladies room before the actual CT scan. When I went to the ladies room and looked in the mirror, I saw quite a sight!

I was flushed, but in a weirder way than usual. My face was splotchy, with bumps like measles under my eyes. The area around my eyes was very red too, more so than in a usual flush. I didn't think it was a reaction per se from the barium. More like a flush with a barium tinge. When I opened the door, the nurse was standing there waiting for me, and I gave her quite a fright too. I told her that I had carcinoid syndrome, and that although this was a weirder flush than usual, that I would be fine. She asked if I was having trouble breathing or anything like that, but I told her no. I told her we could still do the scan, but we should probably skip the IV injection part of the scan. She agreed.

I went to to change into the hospital gown, and by the time I saw her again (about 3 minutes later) the weird flush was gone. She was amazed.

Did the CT scan, went home and took a nap, and that's all.

Kristin: educating the world about carcinoid one awkward flush at a time.

argh

I finally called the doctor today to get the results of my chest xray. Of course, they told me to call the 800 number. Oy. Why does it have to be such a pain to get an answer. Even if I wait the 14 days that they tell me I need to wait, they still never post the results on the network. That's some serious bull. In order to be seen by any of the carcinoid specialists, I have to a) have an actual diagnosis and b) have tons of imaging and likely a biopsy done. If I don't have these things, I can't even start treatment, so you can imagine my frustration with the snail's pace we are moving at.

arghhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

My arm today

Chest x-ray and no sleep

Let's hope this isn't what mine looks like!

I guess all that napping yesterday really messed me up, because I could not get to sleep last night. Last time I saw the clock it read 4:38, and the next thing I knew my alarm was going off to get up to go to for my x-ray.

I arrived at 9 am, registered at the desk, they took me right at 9:15 and I was out of there by 9:19, in spite of my inability to get in the proper position for the x-ray. It didn't help that I got the trainee x-ray tech, but that's just about my luck these days. Don't know when I'll get the results, but knowing my doctor, it will be at the most inconvenient time!

Time for a nap!

Oh inventory

Three weeks later, my case no longer looks like this!

Yaaay....inventory tonight. I don't hold out much hope for it going smoothly, but I suppose you never know.

In other news:

* Rod is getting new glasses today

* Douv got an iPhone yesterday

* I have a paper due on Tuesday that I haven't started

* Gavin is afraid of grass but likes the pool!

That's all for now, off to "work on my paper"

This is my arm during a flush

Note to self

I'm experimenting with my caffeine levels to see if they affect the flushing that I get, and it seems to have an affect. Yesterday and today I skipped my Starbucks (but not my homemade morning espresso) and the flushing seems to be less. I will continue this experiment this week and see how it goes.