what thoughts rattle around in your brain when you're a mom of a toddler and a breast cancer patient?

Thursday, April 28, 2005

The Hokey Pokey Chemo

I was just chatting with my friend Linz on IM today about my latest chemo tragedy. The Vanderbilt Regimen of chemo has done nothing to shrink the bad guys in my lungs, so it isn't working. I've had two treatments/rounds and it should have had some impact but it didn't. I told Linz that I go into each kind of new chemo thinking it might be the Magic Bullet to Turn it All Around...and that's What it's All About.

So, next on my tour of all chemo drugs known to mankind is Navelbine. Will it be The Hokey Pokey Chemo that kills cancer dead? We'll see. I haven't asked my oncologist how many treatments we will try before putting me back in the CT scan to check on the bad guys in my lungs. Navelbine is a weekly 3o minute IV drip. It actually sounds alot less bad then the side effects I endured from Vanderbilt Regimen. I mean, I'm totally willing to take an ass kicking to kill cancer with chemo but if the drugs aren't working it sure isn't worth it to feel so bad.

In other news, I have a fractured rib that apparently is an unfortunate result of my pleurodesis surgery. I have had loads of xrays between surgery and now but only the CT scan picked it up. In a way, I feel sort of vindicated because I still have so much surgery site pain and I didn't think I should. But heck, if a rib is fractured right in between both incisions, then it all makes sense.

My birthday is coming up on May 7, and my wedding anniversary is May 5. With all the crap going on with my health, I keep thinking, is this my last birthday? Since finding out about the spread of breat cancer tumors to my lungs, the words "poor prognosis" have been used to describe my condition--one doctor, one assistant and my malpractice lawyer have all used it, although god bless him, my own oncologist has the senstivity not to use those morale-defying word in my presence.

It might be hard to tell but I'm actually feeling better today both emotionally and physically. I even spent about 6 hours at work. I'm going to go to work again tomorrow, I think its good for me, and of course, I need the money. I don't know what I'll do if I get to the point where I am too sick/tired/whatever to work. I have adult-sized expenses and I don't think disability pay lasts forever. Remind me to look into that...what exactly happens to people who become chronically ill and have to stop working? Are they the homeless I see? Do they live on the couch at a relative's house? It seems worth researching.

Tuesday, April 12, 2005

Medical Hallucinations

I mentioned earlier that while in the hospital, the pain medicine made me hallucinate. Here are some of the things I remember:

The crab
I am walking out a blue door that goes out to the beach. The sand is bright white, the sky is gorgeous and sunny. As I walk out the door, there is a tiny red hermit crab that follows me. As it walks, one of it's claws gets bigger and bigger until the claw is the size of a Maine lobster.

The cookie
There is an oatmeal cookie on the kitchen counter. The counter is white and clean. In a few seconds, the cookie is covered with bugs that would make a Fear Factor person go weak in the knees.

Visitors
I am in my hospital bed. My friend Tina is in the chair next to me (for real). Then a huge family files in and sits down, including right on top of Tina in her chair. The family is speaking Spanish and is not there to see me. I actually have to open my eyes to see that my room is empty and this is not happening.


The Morphing Patient
There is a nest, a large one with fuzzy white stuff around the edges. It is big enough for a grown adult to sleep in. Suddenly a patient appears within the nest. And as this patients stretches arms upward, it quickly morphs into at least 4 other patients with different scars from surgery, different hair and skin colors and more. Then the nest is empty again.

Above and Beyond the Call

Since I had surgery, I have really been useless around the house helping with the baby, cooking, general housework. We are lucky that several friends have stepped up to the plate and offered us absolutely amazing assistance. Please read about our angels, I feel so incredibly blessed to know these people.

Bubba and Mandy: Dan knows Bubba from BUD/s training years ago (pre-SEAL training). We ran into him at the grocery store back in December '04 and had him over for dinner on Christmas Eve because his wife was out of town doing medical training. Since then, this couple has done everything under the sun for us: grocery shopping, dog walking, cooking, tons of babysitting, transportation of Veronica to school and afterschool activities, driving me to medical appointments...you name it, they have done it.

Angela: Continues to be a huge help in so many ways. Has done pretty much anything you can think of for me, the list would just be too long. And she spent tons of time with me while I was in the hospital too, even spending the night in the most uncomfortable reclining chair. She is such a nurturing person, I really thank my lucky stars that she is my friend. She makes this whole thing easier to bear.

Susan: Helps with the girls. Babysits, picks up from daycare, drives me to appointments, and is just a good, positive energy force.

Tina: Cooks for us, will come to help with the kids, came and visited me at the hospital and at home while I was recovering, and is just a warm, wonderful and nurturing person.

Mark and Alyce: Visted me in the hospital, cheered me up, brought me pizza because I couldn't eat the nasty hospital food.

Jerome: Visted me in the hospital, helped with our broken computer, brought me his portable DVD player so I could watch movies in the hospital and at home while in bed resting. He is just a good positive person to talk to.

I also want to mention that Dan has just been a rock in all this. Plus, he does all our laundry, grocery shops, keeps the house neat, and does everything for Jennifer and Veronica and me, and is a wonderful husband.


Edited: In a huge oversight, I was interrupted while writing this and I did not mention my sister's part in my recovery on the first draft of this. Very pathetic of me, considering she flew out from NY to San Diego on short notice and stayed for 6 days, slept in the hospital to keep me company, did laundry for my family, made food, brought me medicine, paid my bills and did a host of other things that I was too drugged up to even know about. She is a shining star and I wish I had not neglected to add her story to this. I feel so crappy for not getting it on the first try.

Catching up

It's been a while since I posted anything. Funny how surgery can just turn your whole life upside down. Things never really settle back to where they were either.

On March 11 I had Pleurodesis surgery. To say it was hard or trying or difficult does not even cover it. I spent 24 hours in the CICU, mostly for pain management. The patient in the next room was having a rough night and coded twice in two hours, leaving me with a new phobia of loud dinging machines sounding the warning that all is not well. Directly after surgery, I had tubes coming out of everywhere. Dan and Angela stayed with me all night as I faded in and out of consciousness.

My pain was managed really well, even if I did hallucinate fairly often on the drugs--that it worth its own blog entry. I had an epidural with a timed morphine drip and it stayed in place from Friday (surgery) until Monday morning when the doctor and nurses were getting me ready to go home for Tuesday. I actually cried when they removed the epidural...not because it hurt to remove it, but because it was working so well and I didn't want to feel the pain.

The first meds to control the pain didn't work at all. I think they were giving me percoset and something else. The percoset would stop working about 40 minutes before I was allowed another dose. The pain would start like a low throb in my side...hospitals like you to give a number for pain, so mine would start at a 3, but would rocket into a 10 within 15 minutes, leaving me crying. After two times of that experience, I started calling the nurse earlier to try to head it off but it didn't always work. She would come in and give me demerol in this special IV thing they put in my neck. The first dose of demerol was too high and I pretty much left the solar system but boy did it make the pain go away too. After that, I asked for less so that I could stay somewhat coherent. I could see making friends with demerol for the long haul, it really makes everything go away. In all my recent experience with Rx drugs, it is the only one I could see developing an addiction to, and I have had quite a few come my way---morphine, vicodin, darvocet, percocet, etc.

I was taking pain medicine around the clock on a set schedule for my first two weeks home. Or maybe it was the first three weeks, everything is so sketchy in my brain as far as the real timeline of things. I started to back off the pain meds when I started chemo because the pain meds were making my appetite stay away and I was actually getting too thin...thin enough so that in the hospital, my surgeon was actually making comments about me eating a whole chocolate torte and how that would be good therapy for me. When's the last time you heard a cardiologist say such a thing?

I actually had to take appetite stimulant. What kind of Italian am I to need such a thing? As a woman, I have eaten hundreds if not thousands of times when I was not hungry but it is impossible to eat without your appetite. I am the smallest/thinnest I have been since high school. Maybe middle school. I feel like they gave me someone else's body before I left the hospital. The weight loss was so rapid that even I can notice how different I look.

I started chemo three weeks after surgery and it kicked my ass back to the stone age. I was really sick and nauseated, and I even vomited in the infusion room. In my year of being in the infusion room, I never saw anyone do that! It took me about ten days to feel normal again and since then I have felt better and better every day.

At my post op appointment with the surgeon, I learned that I now have fluid developing on my left side of the lungs. I'm not sure what will be done about that, but it is the reason I'm still winded going upstairs. On an up note, my right side has healed beautifully and my incisions are all closed up. I do still have surgery site pain, but its getting easier to deal with.