Wednesday, July 25, 2007

The last two days have been quite eventful and full of surprisingly enjoyable moments and some not so enjoyable ones. Some of which I have chronicled here. It is a long one so feel free to get bored and stop reading at any time.

9:00 yesterday morning, Mom and I arrived at the cancer center for my first round of chemotherapy. The lobby volunteers offered us juice and refreshments and made us welcome. We didn't wait long for the nurse to bring us back to the chemo infusion center. It is a big open room with a nurses station, lots and lots of windows and three separate infusion areas. Each area has about four to six vinyl recliners with a pillow in each one. They are arranged in a circle, so that patients can interact and talk with the others. Pretty good idea to prevent isolation. The nurses area is nearby and open to the room. They can easily see if someone needs something or calls for them. Infusions can take hours so it is nice that the environment is so comfortably laid out.

My nurse, Jennifer, is in her early 30's and really savvy and nice. She sat with me, mom and Andrea' for half an hour discussing the drugs I would be receiving and what to expect from each one. She was so kind and thorough and spoke with me as a peer in intelligence, if not in knowledge. She told me to pick a spot and recommended the back corner where you can see everyone coming and going and still see out the windows. So I set up residency in the back corner. Mom and Andrea were allowed to stay with me as long as the chairs weren't needed.

Heh, I was sitting in the corner facing the whole room, with my visitors and the nurses and the American Cancer volunteers spending lots of time just talking with me. I felt like I was holding court from my throne. Made me laugh. Mom said that the nurses and volunteers were so interested in me because I am a youngster, rather than their usual elderly patients. I have more conversation fodder and I tend to get chatty when drugged. They started the drugs with IV Benedryl to prevent severe allergic reactions and I was high as a kite for a while.

All in all, my first chemo session took about six hours to complete. And it was a surprisingly enjoyable experience. Having the port implant meant that there was no one digging around in my arms to get an IV started and without an IV in my hand or arm I had both hands free. I had the company of my mom and my best friend, a great nurse, and great conversation with people I will be spending lots of time with in the next several months.

I didn't start feeling queasy until about an hour after I got home. I took one of the phenergan they gave me for nausea but it didn't help much so I took a second an hour later. You are allowed two at once, but I like to start with lower doses because of my weight. I battled the nausea through the night, waking up to eat some fig newtons and take more medicine. Poor David, I woke him up at 5:30 this morning crinkling the fig newton wrapper so loud for what seemed like 5 minutes, because I couldn't get them open in the dark.

When I got up this morning I had the worst cotton mouth ever and my body felt really really heavy. Like my limbs were wrapped in cement. But after a bit of breakfast and juice and my anti-nausea big gun (Emend), I started to feel a little better. The nausea subsided, and I was just left with this odd weakness.

You know that is what is really surreal to me about this whole thing, the times when I need to use a wheelchair to get around and have someone help me get into the bed or to the bathroom. It just doesn't feel like I am me at those times. I am a strong, vital person and I am tough. I do pain and illness well. I handle it with minimal drama and understand that simply relaxing through the pain and knowing that it isn't going to last forever, makes it easier to endure. So when the tough girl can't walk from department to department in the hospital or can't manage to get into the bathroom without help, I start to feel really weird. Who is this person I have become? Personal Long-term illness simply isn't in my plans. It isn't supposed to be part of my life story and I am having a hard time assimilating it. But perhaps my inability or refusal to define myself as a sick person will help in the long run. I won't wallow in this. I won't be a victim. To do so would mean re-writing my entire internal story of who I am. And I am not willing to do that.

Of course there is one thing that I am unable to take quietly - the hair. I am going to lose my hair and there isn't anything I can do to stop it. When I was feeling the ill effects of the chemo last night, I indulged in a hair meltdown. I cried and sobbed about it. I don't want to lose my hair. And I am not interested in being positive about it. Yet. All the well-meaning "It'll grow back" responses I get do not make me feel better. Yes, I will eventually have hair again. But not for quite some time. As long as I receive chemo - 6 to 8 months, my hair will not grow back. When it does start growing again it will be fragile, possibly and probably a different color and texture. And it will grow slowly. Maybe 6 months after I stop chemo I may have something I won't be embarrassed to be seen with. My hair as I know and love it is about to be gone and I refuse to take it in stride. I am mad about it. Pissed off. Sad. And I think I deserve to be. So while I appreciate the caring motive of the 'it'll grow back' crowd, all that I truly wish is for co-misery. I'd much rather you tell me "I think it really sucks ass that you are losing your hair. That pisses me off too!"

This afternoon I had my bone marrow biopsy - the last big procedure to determine my stage of cancer. David and Mom went with me to Georgetown hospital to get it done. One perk of being a Cancer Center patient is that I don't have to go through main admissions and the waiting room gauntlet to get registered, etc. The Cancer Center registered me and took me strait to my prep room.

I had to get some lab work before the procedure so we got to test the amazing port for a blood draw. Yesterday, accessing the port was pretty painful - because it is new and still tender and also because the needle is like a push pin that they pop into your skin to the port below. Today, I went prepared. I got a prescription of Emla cream (mostly lidocaine) and put a gob on the port site and covered it with a small piece of Saran Wrap. By the time the lab was ready to access the port, I was good and numb. Didn't hurt at all. And once again I had my hands free and no stress about how many tries it would take to get an IV started. Yay ports!! If you ever have the unfortunate luck to get cancer, you simply have to indulge in this must-have accessory. It is all the rage in the Cancer Center.

The biopsy itself went well. It was done on the CT scan table. They took the biopsy from my pelvic bone, accessed through my butt. I had to lay on my stomach and using the CT scanner, the doctor located the exact trajectory for the needle. He marked the spot on my ass with an X (of course) and that told him the best path into the bone. It was a ten minute deal. Pretty painless since I got the mighty Fentanyl/Versed cocktail for the third time two weeks. Of course I needed the drugs for more than just pain. Because I had to lay there all covered up - except for one thing. My ass. I lay there on a skinny little CT table facing the wrong way to see the team in action, with my tush quite perfectly on display for any and all comers. Yes, the nice nurse pushed the drugs at about the same time as a stranger began drawing with a marker on my ass. All I could think was "Am I back in College?"

I have to say that I am having a bit of a problem with these doctors who begin performing their little procedures on me with not so much as a "Hi how are you? I am going to draw on your ass now." First Dr. Cain, who didn't say boo to me before the WD-40 attack on my nose and now the Radiologist whose face I never even saw has intimate knowledge of my ass, but didn't introduce himself to me before or after the biopsy.

I am just glad that Dr. George and the nurses at the Cancer Center are so wonderfully human. And I would like to know what the hospital plans to do with those CT scan pictures of my ass. If I were a state beauty pageant winner they would be posted to the Internet by now and Donald Trump would be defending my honor.

Oh man, I am rambling. Sorry.


Ronni said...

I think it really sucks as that you will lose your hair. You have beautiful hair, and it is just not fair for you to have to go through this!

Jooley Ann said...

Sometimes it's hard to know what to say; a lot of people worry about being discouraging in any way. But one thing my mom said -- and that I didn't pass along but now I will b/c I think it might help -- was, "The *worst* thing was losing my hair!" That's a strong statement considering everything she went through, but damnit, it really is adding insult to injury! So I'm with you on the hair thing. You have every right to be as upset as you are. I'd be tempted to respond to the "It'll grow back" camp with something like, "Okay then, you shave your head...and keep it shaved for six months!" -- but they mean well I am sure.

The infusion center sounds surprisingly pleasant. I'm glad they take such steps to make things comfortable.

I once saw David Sedaris read from some of his work; at the time, he was writing for Esquire. He read the following piece (link below), and parts of it made me laugh so hard I cried. Your comments about your ass reminded me of it.

After he read this -- it was the last piece of the evening -- he walked offstage holding his notebook behind him, hiding his "coin slot"-shaped ass (see "Lesson One"). It was hysterical. :)

yer mama said...

I have keyboard toddler interuptus so I can't type much.

Your strength is awesome. Keep kickin butt.

Can you donate your hair to locks of love?

It sucks so much that you will lose it! It is really beautiful.

My sister had breast cancer and lost her hair. Her dh shaved his head to match hers and she eventually got a wig. When her hair grew back it was so soft and nice.

-Ashley Holmes

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Fire Berry said...

Yeah... it does suck to lose your hair. I wouldn't want to lose any more of mine. Seems it's been receding for some time anyhoo. I'd say it started before Arcadia and then proceeded to recede another 1/4 inch since.

Check my blog. I'll make a top ten list for you re: bald headedness.

Oh... you ARE strong. And I am CERTAIN it makes all the difference. Have you seen The Secret?


sarah roberts said...

I am sad to hear about your hair; you more so. All I can encourage you to do about the hair is do as a girl in college did when she lost her hair to chemo: take it as a forced opportunity to explore your inner hair vision... buy a flamming red head wig or blonde or super short. Try something you've always wanted to but didn't due to the grow out factor. Anyway, an idea. Praying for you~SAR