Dr. Kane just called me and answered all my questions! Here is some of what I learned:

* My treatments will be once every two weeks for 4 sessions then do another CT scan to see if it has shrunk. Each treatment session will be about 5 hours long.

* I probably won’t lose my hair.

* I may feel very tired for the first couple of treatments but not debilitatingly tired. It will be worst the first couple of days after a treatment and then improve before the next one.

* I may feel a sensativity to cold temperatures - environmentally, orally, etc. But it shouldn’t last forever.

* The long-term affect of the treatments on my fertility are not certain. The cocktail may diminish but not totally eliminate my fertility. The combo that I’ll be on is not one of the worst that affect fertility. HORRAY! We really won’t know until I’m in the full swing of treatment. I may lose my period during this…although one of the drugs has shown to cause heavier periods. Oh joy of joys. Hehehe

* She wants me to stay on the methadone until we see signs of shrinkage in the tumor via the CT scans.

* She is prescribing me an antinausea medication and a cream to put on the port area to numb the skin an hour before my infusions.

Boy, do I feel better after talking with her! She was so patient and precise. She had in fact spoken with Dr. Curley in Houston this morning after swapping several emails with him late last week.

Now I’m excited again! Woo hoo!

So last night was just one of those panicked phases of overwhelming fear, again. They seem to happen once or twice a week for me. The good news is they don’t last long as long as I get it out and express it either here or to Honey or anywhere that will help me validate my feelings. Just getting them out helps me make sense of it all.

I’m not sure if anyone else experiences this but I have always found that the more I worry and stress and panic about something happening a particular way, it ends up happening 100 times better than that way that I feared. Like when I was 22 and I decided to move out of my dad’s house and in with my mom. There had been so much tension between my parents at the time that I was terrified of telling my dad of my decision. For three days I fretted over it, assuming he’d blow his top and lecture me on what a horrible decision I was making. When I finally bit the bullet and sat him down to tell him, his response was, “Okay. If you think that’s what you need to do then I’m behind you.” He was surprisingly understanding and supportive of it. I think of that situation whenever something like this comes up for me or Honey. Things never turn out to be as awful as I expect them to.

So after finally getting to sleep (thank you, Ambien!) at 2am and getting 8 hours of sleep, I have a much better outlook now. I’ve talked to some of My (Wonderful) People and they’ve given me some great ideas and directions.

First of all, I want to train my brain to think of chemo not as a POISON that is going to ATTACK my tumor and KILL it, but rather as a POSITIVE MEDICINE that will help SHRINK my tumor and make me HEALTHY again. It’s all in how you approach it. Furthermore, Honey and I are not going to call it chemo anymore. We want to give it a more positive and powerful label. He thought of “CRT” - Chemical Reduction Therapy. I’m thought of “Shrinkage.” I sort of want something cute and catchy that I can use regularly. Do you have any ideas?

Secondly, I’m not so sure I’m going to dye my hair pink after all. I ordered the manic panic Hot Hot Pink color but a trusted friend reminded me this morning that hair dye can also be poisonous to your body. And why would I want to add to the toxins in me right now? Even though Manic Panic says their dyes are made with “All natural ingredients” and is “gentle-on-hair” doesn’t mean it’s actually good for my hair. Then again, if I’m going to lose it…??? Ahh well. I am trying to find out if the specific drugs in my cocktail will cause hair loss or not. Then I’ll decide what to do. In the meantime, I may just get my hair cut super short so that if it does fall out, it won’t be in these massive, scary clumps (I have a LOT of hair!).

Finally, Carolyn called a while ago to tell me about getting a Patient Advocate at UCH. She gave me the names of two of them, one of which I met last week in Kane’s office and the other called me on Friday to tell me about support groups I might be interested in. Well, I called the second one (his name is Michael) and spoke with him a few minutes ago. I told him all of my concerns and fears that I may have been swept up in the “system” there at the hospital and I feel pretty unprepared for chemo tomorrow. He is now working on my behalf to get my questions answered and my fears subdued. He is emailing Kane who is not in the clinic today with my questions and he’ll be getting back to me later today with more information. Thank you, Carolyn, for pointing me in the right direction!

I ordered these discs and they arrived on Saturday. I’ve already ripped them to my ipod and will start working with some of the visualization techniques this afternoon.

Thank you to everyone for your supportive and helpful comments. It’s good to know I’m not alone in this afterall!

A late-afternoon nap prevents me from falling asleep at a decent bedtime. It’s 11:15 and I’ve been reading in bed, like I like to do. Reading Crazy, Sexy Cancer, actually and trying to finish it. And finish it, I did. And although I have found that book to be extremely empowering to my spirit overall, something about reading it tonight made me burst into tears when I finished it. And that’s why I’m here, typing instead of snoring.

I have this port in me. There’s something plastic under my skin and it’s freaking me out. I can’t see it. It’s not poking out or anything and I thought it’d be better this way but it’s not. The doc told me to remove the dressing over the stitches and mini bandages today so I did that in the shower tonight. The tape they used and sent me home with actually burned my skin. It started out as a light irritation with some itching. A doc came by and looked it over before I was discharged and he recommended I take Benadryl to counteract the itching. HELLO - I just got off that stuff! I’m still getting used to not being a zombie again. I chose to itch for three days rather than take that crap. So tonight I removed the tapes and gauze, only to find some splotches of skin that look sort of burned by an alergic reaction to the tape and two bumps, covered in bandages, bruises, black stitches and scabs. YUCK. Sounds gross I know but at least you don’t have to look at it like I do. It’s sort of sore but not too bad. Mostly, I hate the bump in there. I feel like I’ve been implanted. I feel like a robot. I feel like a Borg. Yuck. I hate it.

And then I think about what it’s for. Chemo. Chemo chemo chemo. No matter how many times I try to casually say it, it still feels like a stab to the stomach with a poison-tipped dagger. Chemo’s not for me! Yuck. Ow. My ShrinkyDink gave me some insight and answered some of my general questions about it last week, clearing up my misguided assumption that it would make me feel like I have the flu for weeks on end. She assured me I shouldn’t actually feel it in my body, except in the sense that it will wipe out my immune system, making me generally weak and tired (from all my immune system dudes working overtime to kick the chemo’s butt). But aren’t they supposed to kick the cancer’s butt? No wait. The immune system attacks the chemo while the chemo attacks the cancer, right? But then I don’t even WANT an immune system while getting chemo, do I? So why are all these books telling me to eat foods and take vitamins to boost my immune system? I’m confused. But then ShrinkyDink went on to tell me that the “infusion center” at UCH is very modern and comfortable. There are little cubbies where you can get your treatment with a friend or family sitting nearby, little tv’s, a fridge in the main room with foods and drinks to share. Free wireless internet (you can bet your booty I’ll be blogging from there one of these days!). It all sounds posh and cozy and fanfreakingtastic. Like a spa. But with poison and weak, miserable-feeling people. Probably all old people, too. The kids with cancer get to go across the street to the brand-spankin’ new Children’s Hospital which is gorgeous and wonderful and makes me wish (more than usual) I was 8 years old again so I could go there.

I’m really pissed off that I didn’t get to see the infusion center yet. My doc said she’d send someone in to give us a tour of it when we saw her on Tuesday but nobody ever showed up. In fact, after waiting another 10 minutes in the exam room with a light flashing in the hallway, I had to walk out and grab a nurse to get her to come in to draw my blood. I guess their fancy flashy-light-alert-the-nurses system wasn’t working that day. Woopy for me. But I digress……. the point is, the doc never got anybody to show me the chemo corner and after being in that exam room waiting for the doctor and, later, the nurse to show up for OVER TWO HOURS, I wanted out of there FAST as possible. I was back there on Friday for the port but you can understand why touring that place wasn’t at the top of my list after being discharged from invasive surgery. Anyway, I keep thinking, if I could see it I could know what to expect when I go in next week. I could be ready. I could prepare. I could understand and then not be so scared.
***************Honey just came down to check on me and we talked a bit about all of the aforementioned fears. See, I’m supposed to start chemo Tuesday morning at 7:45am (won’t be my regular time but that’s the soonest they could get me in this week to start). I feel totally unprepared but Honey helped me think of an idea: I get one of My People (it’s what I keep calling my team of close friends and family who have been going to doctor visits with me, driving me around while I’m on my pain meds, and above all, being beacons of enormous support and strength for me) to go with me up there tomorrow, walk into the front desk and ask for a guided tour or introduction to the infusion center. If it will help put my mind at ease as I prepare for Tuesday morning then it’s worth the price of gas for the trip up there and back! Please excuse me while I draw up an email to some of My People. More tomorrow.