Chemo suite




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!


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!