Wednesday, March 4, 2009

One more thing behind me

I have a port. Surgery went smoothly, no problems, we were out of there sooner than expected. It feels like I got punched really hard right under my collar bone, like I have a big swollen bruise. But compared to the last surgery? It was nuthin. It's titanium they say (It's all under the skin, so I never saw it), I think of titanium as really, really strong - so I tell myself I got a strong, sturdy port to handle the chemo, one less thing my body parts - like veins - have to deal with.

And about that chemo... here's the drill. I start Friday. If all goes well, I'll have 8 treatments every two weeks - total time 16 weeks. Each time I show up at the lab for a blood draw (they can draw from my new port!), after this first treatment that becomes more important because they want to check your red & white blood cell counts to make sure you are strong enough for the chemo. Then I see the my doc (Amy Harker-Murray) all that takes an hour, then I report to the "infusion therapy" area. I'm told you get your own room, with recliner, TV, DVD's, etc. They start an IV (In my new port!) and start you with a combo of steroids, benedryl and some anti-nausea meds. Then the hard stuff. The first 4 treatments will be what's called AC - Adriamycin & Cytoxan. The most dreaded drug of the bunch is the Adriamycin aka The Red Devil, it's a strong chemo drug used in conjunction with other chemo drugs for a variety of cancer types. I like this description of what it does "it first disrupts, then destroys the growth of cancer cells." Works for me. It's called the Red Devil because it's bright red, it's given in an infusion, not a drip - meaning the nurse has a big fat syringe type thing that she infuses into the...IV line or right into the port, I'm not sure. It takes her about 15 minutes. Also called the Devil because of the side effects: Decreased white blood cell count with increased risk of infection , Decreased platelet count with increased risk of bleeding , Loss of appetite, Darkening of nail beds and skin creases of hands, Hair loss - Alopecia, Nausea and vomiting, Mouth sores. Yeah, not a fun one. The 2nd drug Cytoxan they do in an IV drip, and I think it takes 3-4 hours. It has the same chunk of side effects, with possible stomach pain, diahrea, and lethargy added in.

After each Friday chemo, I go back 24 hours later (Saturday) and get a shot of Neulasta. This drug stimulates bone marrow to produce white blood cells, allowing them to do higher doses of the chemotherapy and with a shorter time between treatments (Every 2 weeks instead of every 3) and to keep your immune system up more, so you aren't at such a great risk to catch EVERYTHING and anything that's around. The main side effect of that can be bone pain (from those bones frantically producing white blood cells, as the chemo is killing them....)My final four rounds will be of the chemo drug Taxol, here's the skinny on it: " Taxol is called a mitotic inhibitor because its interferes with cells during mitosis (cell division). Similar side effects as above, but also add in: pain in the joints of the arms or legs lasting 2–3 days, tingling in the hands or toes.

Not everyone gets ALL of the side effects, some they have other drugs to try and control. My Onc. is very determined to find the right anti-nausea meds for me, and I've been reading up on it as well. My docs and I are going to do our best to keep the puking and nausea-misery to a minimum. I will be tired. The sick and exhausted is my biggest worry/fear - that is the big unknown for me, and what causes my pre-chemo anxiety for sure. I spoke with Dr. Harker-Murray this morning (there was a mix-up, freak out on my heart scan results - she called me - once again herself to straighten it out) when I talk to her and she assures me of her commitment to keep me as well as medically possible, it calms me down.

I will lose my hair. All of it, most likely. I'm really fine with losing all the hair from my nose down, but the whole head, eyelashes, eyebrows thing is freaky. I have read some women kept their eyelashes, or their brows thinned but didn't disappear. But I'm assuming I'll be as slick as a new born baby - and any thing like an eyebrow that I get to keep will be a bonus! I'm supposed to go wig shopping tomorrow with my friend Debbie, can't wrap my head around that. I have LOTS of hair, it's very thick. I've worn it long or long-ish since I was 4 years old. How do you try a wig on with all this hair on my head? We'll figure that out, too. I was on a website that sold stuff for women dealing with all the breast cancer problems, they were having a sale on hats and stuff - I ordered a couple of hats (they cover your whole head) and scarves and a turban - just to be prepared! SOMEBODY needs to come show me how to tie scarves, I am so the anti-girly. The hub has said several times lately, that if it was him he'd just go ahead and shave his head now . I'm just not up for that right now. From what I've read it usually starts around 2 weeks after your first treatment, and when it starts going it goes with a vengence. We'll see how I feel next week. But I will end up shaving it, I'm not going to leave this thick head of hair all over my house - ew. I wanted to get it all cut off and give it to locks of love, but was told you can't have hair dye on it. Makes NO SENSE to me, if I didn't use dye I'd be donating a grey wig - and these wigs are given to kids, what kid wants a grey wig? I've also been told that hair is the thing birds most love to make nests out of . It will be full blown early spring when my hair comes out - so maybe I'll donate it to the birds. I can see my neighbors reading this and freaking right now - she's going to let her hair blow around the neiborhood? double ew! I don't think I'm up for a big group ritualistic head shaving either. I don't know, I'm going to take this one as it comes. If anyone sees a hat/cap/scarf that will well cover a bald head, grab it for me! I thought - I'm glad my pool is private, at least I can go paddle around this summer in all my bald headed, scarred up glory without feeling self concious about it. With heavy duty sunscreen tho!

I have had moments of serious anxiety over the pending chemo over the last 10 days or more. It's like a roller coaster - in my head it's a pink roller coaster, of course, up down up down. Right now, in this moment - I'm better than I have been in days. My son is well again, he's back on his preventative medicine and it seems to be working, and it just seems like he's come out the other side of that dark, sad place he was in. That was rough - I tell ya. It seemed he didn't keep down any food at all for over a week, he's visably skinnier, but that ended last Thursday or so. Tonight he came home from a concert at SMU, we were standing in the kitchen, and I swear I was looking up at him more than before - he grew again! Obviously this long episode of his illness didn't stop that! He is the sweetest, sweetest son - he tells me he loves me all the time, every time he gets out of the car at school, every night before bed. He's almost 16, and I know that's not always the case at this age, for I am so grateful for my sweet, smart boy. And I have a port! A titanium port, it will protect my arm from all this - so I'm grateful for that. And my patient, steady as a rock husband. It's midnight, he's been asleep for 2 hours, I could go shake him right now and say "honey, we're out of milk, my stomach's burning and I really, really want milk........." He would stumble right out of bed, and go to the 7-11 and get me milk. But I"m trying very hard to not have wacko requests like that, it's the fact that I know he would that counts. And the fact that I know he'll be there for me through all of this, every minute I need him . These are the thoughts that slow down my pink roller coaster, helps put my mind in a calmer, safer place.

10 to 21 days after the final chemo I start radiation.. My radiation oncologist is Dr. Ann Spangler - she was awesome. 5 days a week, for 6 1/2 weeks. Tired is the only real side effect from that, I believe. They have a slick radiation set up for their patients, I'll talke about that later, it seems years away at this point, with the endless abyss of chemo before it. Thank goodness I don't live like a 2 hour drive to radiation, how much would that suck? Whew, my little jaunt from the PC to such a great cancer center - another thing I'm grateful for. I remind myself of that whenever I'm schlogging over there grumbling, for the umpteenth time in 3 weeks - it's not far, be grateful!

So it sounds like my mood tonight, this close to chemo - is grateful, and calmer than I have been. As awful as all that chemo crap sounds, it really, really is a concoction and a schedule that suits my tumor type, and has proven to really really kill it and kill it good. I'm grateful for that, too!


  1. Hi Kelly- Saw your comment on Deborah's blog. I just had my 4th A/C through my port. It's a lifesaver - the port that is - your protocals seem the same as mine. Welcome to the club:) I'm down here in Austin, so here's my blog: It all sucks but we'll all get through. xoGail

  2. Heya,

    Welcome to the Port-A-Cath club. I'm glad your surgery went well. All the best,


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