Nine Down and One to Go

I went to chemo with the holiday spirit donning my pirate/gypsy costume (it was questionable). Got a few laughs. Had the picc line put in first. The actual procedure didn't take too long. Once they brought me in. The technician said the hold up was waiting for the nurses to do the paper work. I can believe it because Luke and I were waiting close enough to hear them discuss a fundraiser raffle for some time and various other non-work related topics when they were supposed to be entering my info in the computer. Finally the tech came and asked if the paper work was done and said he was taking me anyway.

The procedure is done under a local anesthetic using the ultrasound machine to guide the catheter through my vein and up into my heart. Now I'll have a tube coming out of my arm for the next three weeks. But that's not so long. I have to go back each Monday so they can flush it out and make sure I don't get any clots.

Then we saw the onc. My labs were much better. He said not to be surprised if I needed to have another blood transfusion as this chemo seems to make me really anemic. He doesn't want to stop, though, because I have "such advanced cancer."

When I went for the chemo it all went well with the picc line. I met a woman there from Harvey who was displaced by Katrina. She has ovarian cancer and has really had the problems with chemo. Starting with 9 months of chemo treatment only to learn that not only was her cancer not responding to the treatment, but she actually had a new tumor grow in her spleen. All this while she had a lot of nausea and allergic reactions to the treatment. I felt way ahead of the game after talking to her.

Only time will tell how it'll go this time. Maybe it won't be so bad. I asked the onc before if there was something I should be eating or doing (besides the aranasp shot) to deal with the anemia. He said, no not really.

With my costume today I wore three special things around my neck. One was a "pearl" necklace that was my mother's. She died when I was 16 so it was sort of a plea to my ancestors to help me out and give me strength. The second was a St. Peregrine Medal, the patron saint of cancer patients. This was a gift from a friend. And the last was a medicine bag with three pebbles in it with the words, "peace," "love" and "believe" written on them. This was a gift from my sister, Sharon. It was a kind of pay it forward thing as it was originally a gift from her friend in New Mexico to her when she was going through a bad time. When she got it there were only two pebbles, but she added the "believe" one when she gave it to me.

I was ready for Trick-or-Treaters tonight and wouldn't you know after many weeks of no rain the sky opened up with hard rain and lightening and thunder. I don't know what to do with this candy!

Pirate Dreams

Happy Halloween!! My favorite holiday.

On my way to chemo 9 dressed as a pirate. Hope to at least get a laugh from the nurses. I wish I had a theme song for the day, but none comes to mind just yet.

"Everything is gonna be alright" - that's part of a song, isn't it? Can't quite grab onto it but I'll think of it later.

Gotta go.

Feeling Better, Just in Time

I'm better now. My arm is still somewhat numb, but it doesn't hurt too much. I still get tired easily, but am willing to have a little fun and am managing to squeeze out a joke or two around the house.

Chemo tomorrow. It's also Halloween. I'm thinking I might dress up as a pirate to go to chemo. I'll have to go to x-ray first for them to put in the pick line I'll have for this chemo and the next. Something else to live with for the next three weeks. But as a pirate I could add a little levity, at least while I'm awake. I fall asleep after they give me the benadryl.

I don't know if I mentioned when my right hand swelled (an after effect of the surgery). I had a big hand and small hand for a while (they've evened out some). Incidentally, the right boob is at least a cup size or two smaller than the other. I guess the big hand balanced out the small boob on my right side. Now that the hand has shrunk I'm off balance. I have to find out where to get an insert for my bra so I don't look so lopsided.


Only two chemos left. I can do this! I just hope there're no more surprises.

The Joy Never Ends

Okay, all kidding aside, this sucks! Apparently it's going to be my lot to experience every evil thing chemo has to offer. I hate to recite a bunch of complaints, but this one hasn't been so easy. When they injected the chemo (remember no more port) the vein in my forearm blew and the chemo leaked into my arm. This left a giant "burn" which irritated a nerve. The burn itself didn't (doesn't) hurt much worse than sunburn, but the nerve, HOLY SHIT, that hurts!

It wasn't immediate. It took a few days and of course, reached fruition on Saturday afternoon (Dancing Day in the morning, pain in the afternoon). I called the weekend number where a chipper girl answered and said, "Is this an emergency? Because I'm not supposed to get the doctor unless it's an emergency." I yelled at her. I said, "How the hell am I supposed to know if it's an emergency? Nothing like this has ever happened to me!" She got the doctor. I lost it with the poor doc on call, telling her that I just couldn't stand it anymore. You're given numbers to call and when you do you're made to feel like you shouldn't be bothering people. She wanted to know who made me feel that way and I told her.

Anyway that was the beginning of an exceptionally bad week. By Monday I had fever and they wanted me to come and see my onc. He felt bad but said there was nothing to do but wait it out and he gave me pain killers and told me to put heat on it. Then he sent me for a flu shot.

That night I woke up vomiting. My fever kept coming and going all week and I was unbelievably tired. Friday morning I woke up with 102.2 fever. They want you to go to the hospital if it's 100.1. At the hospital they took blood and did cultures. My hemoglobin had dropped from Monday. It was 8. I think it's supposed to be between 12 and 16. (I'm going to check that when I have time). This accounted for the headache and shortness of breath I'd been experiencing.

Anyway, they gave me two units of blood, but they couldn't find the blood designated for me by a friend naturally. Then they sent me home as my fever was down. I felt like crap all weekend and couldn't move. In fact I mostly slept through Monday. I did manage to get up and go to work yesterday and I'm about to go now.

My arm is peeling now and looks really gross. It alternates between numbness and pain. My mouth hurts, I have a sore on my tongue, and every time I take a deep breathe it sends searing pain through my throat/chest (I can't tell anymore where the pain is). I don't know how much more of this I can take.

Sleep Can Do the Trick

I slept really late this morning but I guess it was just the ticket for my mood. As I came out of my bedroom I heard the happy notes of Luke's guitar practice. I felt inspired to dance and shimmy around the room, bopping up and down in counterpoint to his playing. I am anti-rhythm woman (hear me roar), and the sight of me dancing steps in no relation to the speed or rhythm of the guitar playing is quite comical. Add my patchy head of hair and my giant sleeping shirt (designed to cover my extra flesh) and it's not a pretty sight. I don't care. Something I'm learning - when you feel good don't waste it, grab onto it.

Now everyone has left the house for various activities and I'm still feeling light, so I'm putting on the stereo to dance around and clean the house.

Hair Loss and Antidepressants

Took off half a day today. Trying not to over do it. I’m back to being tired again. That’s what poison does to you.

My hair started to fall out again last Saturday. It had been growing back and for a while it felt like my life and my appearance might be getting back to normal. It had grown enough that I stopped wearing hats everywhere. It was coming in dark, almost black and silver/gray, just like my sister Cheryl’s hair. My hair used to be a medium brown.

I wonder if it’ll grow in dark like this again or if I’ll get a new color. When that bunch of hair came loose in my fingers I didn’t handle it too well. I knew it would fall out again, but… This is hard. I had an early morning break down. But Luke was there and reminded why I’m doing all this.

I didn’t shave my head this time. My hair is really short anyway. It’s amazing how thick it is, though. It’s a real mess, especially in the shower where most of it comes out. Before I leave the house I run the dust buster over my head (oh yes I do) to catch the loose hairs and then pull on my hat.

A few people have suggested to me that maybe I should try antidepressants. First let me say I've tried them before and they definitely helped when I needed it. I'm not knocking them, but the truth is eventually they make me feel flat. Yes, the crying stops, but so does the laughing.

Here’s how I feel about it. This is the biggest event of my life. I own these emotions. I'm not going to be denied the feelings, no matter how hard they are, that come with it. I need to be able to lose it sometimes and I need to be able to laugh too and to curse the universe and to beg my ancestors to intervene, knowing it's fruitless, to feel despair and to have hope. I also need to feel calm and normal and know that’s real. Of course, having said all that, I know very well that things change and I may change my mind later, but for now - no antidepressants.

Eight Down and ...

two to go. What?? Another bit of info I haven't passed on yet. On the day we went for the seventh chemo (that was put off a week to let the onc and pharmacy work on getting approval for payment of avastin) the onc hit us with something he hadn't mentioned before. He said he thought I should have four more treatments, not two, so I'd have four taxotere consecutively and I'd be able to have more avastin before we stopped. His main reason he said was because, "even though we've been telling you all along how quickly your cancer has shrunk, it really didn't shrink as much as it should have after six chemo treatments." (I had six treatments before the surgery).

Take a minute to think about that.

My reaction was, did he lie to me before? I don't know. In my opinion he did, but does he think he did? I assume he was referring to the three positive lymph nodes, but I don't really know. I had seen him before this day when he knew the results of the surgery and he never mentioned two additional treatments. Here he was standing in front of Luke and me saying, well, we really didn't tell you the truth before. When he left the room I turned to Luke to check if I had heard what I thought I did. Luke's reaction was the same as mine.

I think the main problem with this onc is his bedside manner. Let me say I believe as an oncologist he is a good doctor. He's analytical and I think he really does pay attention to my particular case. He investigated this new drug and discussed with the pharmacist and checked the literature to see if weekly or bi-weekly treatments of taxotere would be easier for me to take than the larger doses every three weeks (it wouldn't). He did treat my nueropathy immediately. I have spoken to other women whose onc did not and as a result they still have trouble two years later. He has given me the meds I need to avoid nausea, another problem other women told me they were under medicated for. All these things add up.

However, he just doesn't understand my need to know what is going on with my illness. He wants me to come in and do what he says, no questions asked. I want to understand. And I don't like the surprises. It's just so frustrating!

No Pollyanna statements tonight. I'm having a total of ten treatments, instead of eight. I'll have to have radiation when that's all done. My hope of being finished by the end of the year is blown away. I won't be able to wrap it up in a box marked 2005 and put it behind me.

Updates

When the first group from Katrina was still here I had an appointment with my oncologist. At that time he told me there is a chemo drug (avastin) used for colon cancer that has recently been found to be effective in preventing the recurrence of cancer in breast cancer patients such as myself that are not HER2 positive. This is good news as there really hasn't been an adjuvant therapy for us hormone negative gals. The catch? Not FDA approved for breast cancer, just yet. He told me to see if my insurance would pay and if not we'd have to decide what to do.

Long story short, insurance co. said no. We decided we'd have to pass and planned to have the taxotere as scheduled. When we showed up for the chemo, all pre-medicated, he said perhaps he could, with the assist of the hospital pharmacist, convince the insurance company to pay or short of that, get the pharmaceutical company to supply the drug. This is what is so frustrating about this doctor. While I appreciate the extra effort, why in the world does he let me pre-medicate, take off from work and drive to Shreveport thinking I'm going to have chemo and then tell me to wait and let him try to get approval? He couldn't have told me before this that he might be able to secure the drug?

And communication with him isn't getting any better. When, in an effort to clarify what he was saying, I repeated his suggestion that the insurance might pay after all, even though they had turned me down, he took my question as refusing the new treatment. I resisted the urge to yell at him and maybe pop him on the top of his little head, even though he was asking for it. I find myself taking deep breaths before speaking to him.

The good news is the pharmacist was able to convince the insurance company to approve payment for the new med by sending them the literature supporting use of avastin for breast cancer patients. Basically, if they pay for this drug now, maybe they won't have to pay for more treatment later.

Okay, so the following week I had the two treatments together. And tomorrow I'll have another one. I believe I already talked about my reaction to it and there's no reason to rehash that.

And time rolls on

It's been nearly a month since I last posted. I've been overwhelmed with people coming and going, school starting, getting back to work after surgery, doctors and chemotherapy and hurricanes.

All my evacuees have gone home now. Last time I wrote was the day before chemo was scheduled to resume. Well, it didn't happen that week. It was put off a week (long story I hope to get to this weekend). I had the chemo the following week and then we had our own hurricane. Some people in the surrounding area are still without electricity. We were lucky. We were only without electricity about 16 hours. That was about all I could stand of the heat, because it was the weekend after chemo, which is my worst time.

Fortunately, the "rest" I had since the last treatment did me good. Physically, I was much stronger when I had this one and my reaction to it wasn't too bad. It certainly was nothing like the last time. I had stomach cramping and gas (this is from a new chemo drug I hope to talk about this weekend) but only a day or two of mild pain compared with the four days of constant pain killers last time. I did have more numbness in my mouth, but my feet are no worse than they have been. I wonder if I'll always shuffle when I walk? I am very tired though. That's one reason I haven't made any posts. Very tired. This should be my strong week, (Monday I go back for the next treatment) but after work I'm drained.

Speaking of work, it's time to go, but first I must mention that we did locate my brother, Tom. He's fine and was worried about us.

Luke tells me it's cool outside today. Whahoo!