Dr. Kane, The Magical Tumor Board at UCH and Dr. Curley all agree that it is good news that my tumor has not grown in three months but we really need it to shrink more than anything. Furthermore, they suggest that my next step in treatment should be a combination of A) chemo embolization (see below for explaination) and B) a new systemic chemo combo, part intravenous like I have been doing, part oral pill form (possibly taken at home?).

Embolization: Basically, the embolization consists of a catheter being fed through the femeral artery directly into the blood vessels of the right lobe of my liver (the one that is being squished by tumor) and injecting chemotherapy drugs directly to the tumor’s blood source that way. The purpose of this is to get a more direct shot at pulling the tumor away from the blood vessel so that we might go in and remove the tumor surgically. I would need to stay in the hospital at least overnight for observation.

New Systemic Chemo: The new systemic chemo combo is part of a Phase One Study at the University which I have to jump through some hoops in order to qualify for (Dr. Kane is working on that already). She did tell me the specific drugs used in that study and I intend to research them a bit on the internet before beginning. The only concern at this point is that one of the things I must do to qualify for the study is I need to be chemo-free for four weeks prior to starting. Naturally, my fear is that the tumor may actually grow during that time but Dr. Curley says he doubts that it will do much growing during that time. If I decide to do this (and I think I already have), then I’m not going to have chemo next Friday so as to have begun my four-week-chemo-drought already.

We are meeting with a doctor in the Interventional Radiology department (that does NOT mean radiation) next Wednesday to discuss the details of embolization. In the meantime, Dr. Kane is gathering info and paperwork for me for the phase one study. We meet with Dr. Kane next Friday morning for routine blood work and to discuss our net step decision.

At this point, as long as my body can handle it, I’m totally committed to hitting this tumor with all my guns locked and loaded, which means leaving no option unconsidered, no matter how scary, new or unproven it has yet been. Naturally, we are asking about risks, statistics and outcomes but I’ve already learned thusfar in my journey that statistics don’t mean squat when you’re dealing with cancer. Cancer is different for everybody and it reacts to different drugs differently too. I just consider myself lucky enough to have such a strong team of innovative and intelligent doctors on my side there at the University. My ShrinkyDink knows all about that tumor board and she assured me that they are all a bunch of uber-intelligent geeks with tons and tons of knowledge on tumors and how to fight them. I’m counting my blessings there for sure!

So, next week we’ll know a lot more. I’m going to research a bunch right now. Let the waiting continue!

Yesterday, I got up from blogging, got dressed and headed out. Ran a couple of errands then came home to walk the dogs. I felt so much better having accomplished something, no matter how minor it may have felt.

I’ve heard about this class put on by the American Cancer Society called Look Good…Feel Better and I’ve been waiting months for them to have another session in my area. Finally, on Monday, they are having another one. Apparently, you go and learn all kinds of ways to look good as a cancer patient, even though you may feel like crap. That’s exactly what I need (*pointing to the constellations of zits scattered across my face*). I just called and left a message to register for the class. I can’t wait!

That’s all I seem to be doing lately. Waiting for the next round of chemo. Waiting for Honey to come home and play with me. Waiting for my energy level to return in 20 minutes or so in order to get something else done. Waiting for someone to call or email or comment or just let me know they’re out there, waiting, like me.

I’m so freaking bored. I got out yesterday. I drove my sorry butt to Sister’s house to pick up something and then I drove to FedEx to send it out. That was very exciting. A whole four mile trip all by my lonesome. The shitty part was that by the time I got home (in fact, even before I left) I was in quite a bit of pain. When I got back, I ate some junk food for lunch, took a pain pill and then cross-stitched the rest of the afternoon. That doesn’t feel very productive. Hell, I don’t feel very productive.

I’ve run out of shows to watch on TV. My fingers started hurting from my furious bracelet-making endeavors last week so I’m taking a break from that. I also spent a whole day last week frantically shopping the internet for whatever tickled my fancy: a clock for our living room, new shoelaces for my Chucks, a replacement remote for my Bose-iPod speakers. That can get real expensive real quick, ya know? I probably shouldn’t be doing that too much. It’s nice enough outside today, I think I’ll take the dogs for a walk this afternoon.

Sooooooo…how bout a medical update for ya’ll?

I FedEx’ed my most recent CT scan to Dr. Curley at MD Anderson. He’s not really in charge of my care but he’s still an expert and I guess still invested and therefore should be in the loop (or so I am told). So I overnighted it to him and told him that my oncologist is presenting my case to her tumor board today in order to come up with a Next Step, New Strategy, Another Direction, since the tumor has neither shrunk nor grown in the past three months. I don’t expect anything new from Curley but he seemed interested in his email back to me and Honey.

In the meantime, I am dealing with night sweats. Ha ha. It’s all very funny that I am going through what has recently been called “Chemopause.” It’s menopause (supposedly not permanent) as a result of the chemotherapy drugs in my system. No period. No sex drive. Night sweats. Hot flashes. Moodiness. All the joys of menopause that we’ve either heard about or experienced. And I’m only 32. Joy.

Anyway, I asked Dr. Kane about it last week with regards to my lack-o-sex-drive and she said she she could put me on hormone replacement therapy, much like the birth control pill. Yuck. I don’t want to go back to the Pill. I asked her if that might make my cancer worse. She said she would test my tumor for blahblahblah….that’s when I zoned out.

So then I asked my message board of Young Empowered Survivors about the night sweats that are disturbing my sleep on a regular basis and they started spouting off all kinds of lingo like ER/PR HER yadda yadda. I asked for clarification and here’s what I have learned:

ER is Estrogen Receptor, PR is Progesterone Receptor, these two are your hormones, HER is Her2Neu Receptor, this has to do with what kind of cells your tumor is made up of, if your positive they are very aggressive, has something to do with protein amplification and overexpression. For example, I am ER/PR-, HER+, you probably already have your markers, just ask your Onc what you are. If they’ve ever mentioned Herceptin you’re HER+, if they talk a lot about hormones you’re one or both ER/PR+. There is also a thing called triple negative which means you don’t have any +.

Now, some of this my onc is already testing this week on the tissue samples she has from my tumor from November. The rest she has to test in my blood come next Friday when I return to her for more chemo. (MORE FREAKING WAITING!!!!!)

Last night I slept in my summer nightie, Honey turned down the temp on the thermostat before we went to bed and I cracked the window even though it was only 32 degrees outside. FINALLY, I was able to sleep through the night (not including potty breaks) without soaking my pillow! It felt great!

So that’s that.

Maybe I’ll drive myself to Target to buy toilet paper and more hair color (still trying to find that perfect shade of brown!). That would be very exciting for me! It sure as hell beats waiting around here for something to happen!

Did I mention I think I’m getting sick? I woke up with a sore throat this morning and my glands feel all swollen. It hurts to swallow.

Could it be that the CAKE actually gave my immune system the big One-Two-Punch this time around?! We shall see!

Where’s the vitamins?!

The cleaning crew is expected any minute now. Two weeks ago they came for the first time and it was chaos. I was overflowing with anxiety before they arrived, trying to make sure everything was clean enough for them to clean. That’s an old trick my mom taught me…many of you may be familiar with it: Clean the house before the cleaning people get here. It’s super fun.

Anyway, I promised myself that I wouldn’t get as anxious this time around. This is my house, afterall, and I am paying them to clean it whether I’m here or not. And I really don’t feel like leaving the house today. It’s just their energy is so chaotic while they are here, all jabbery in Spanish, asking each other if they’ve cleaned such-and-such yet, yadda yadda. Half the time I don’t know if they’re talking to me or not!

I’ve sequestered myself and my dogs in the loft with the intention of staying out of their way whilst also cleaning and reorganizing my desk. But I’ll probably just sit in here and play my new addictive Sims game instead. Whatever.

All I know is they’d better get here soon, get it done and get out so I can move on with my day! Hehehe Anxious much?