"When an affliction happens to you, you either let it defeat you, or you defeat it.." - Rosalind Russell

June 22, 2009

CT SCAN

CT SCAN NEGATIVE!!!!

Diagnostic Procedures, Cats & Naked Biking

So it was an exciting weekend!

First of all, I had an AWESOME time biking nude in the Solstice Parade. It was an exhilarating experience and I am sooooo glad I did it! There were about 500 of us this year, which was first apparent after there was no room at the Palladium for the painting party. It is actually pretty difficult painting yourself and others when you are trying to dry your armpits with your arms to the side and when you keep "exchanging" colors with everyone who walks by you. I had to repaint about every 5 minutes. It was fun though to be amongst tons of people sharing paint and admiring their body art. After the painting area was cleaned up we gathered in front and spent about 30 minutes assembling for a group picture (impossible) and walking around photographing each other. I personally loved the girl painted like Pac-Man. Awesome ideas. Next year I will definitely plan better and work on my ideas- there were a few pitfalls (not getting there early enough so my base coat wouldn't dry, having my friend help me paint my planets when he couldn't draw a circle; leaving all my stuff at the Palladium so I had no clothes later..). After we took our group photo we all gathered for a short ride around Ballard- another area of town that wasn't expecting us. I didn't know what to expect but was greeted with honks and waves and simply stunned people. The coolest thing was that when we passed clothed bikers, we cheered and yelled and actually got two to strip right there in the street and ride with us! By the time we ended up at the parade I was so psyched up. There were people 10 rows deep lining the streets all cheering and waving and photographing us for like 10 blocks. It was awesome! We rode and waved back. When we got to one intersection, a group painted like cops stood next to the real cops and helped direct us on the route- it was hilarious. There was a guy in silver skateboarding in and out of the crowd and catching rides. When we got to the end a few of us circled back around so people could get more shots. It was like being a celebrity. After we were done I had to take a trip back to get my clothes and got a little lost. So that was also kind of fun- being the lone rider on a major street. After I got my stuff I spent the rest of the day in a sarong hanging with friends and enjoying the rest of the festival. It was all- around a great day! And don't worry, I will upload my pics if you don't have facebook! Here's an article in the local newspaper.

This weekend we also had some other news. My roommate's cat has been missing for a week. It was tough cause we had twice heard from the neighbors that a similar-looking cat had been hanging out in their yards. So excitedly we went searching, only to find from a neighbor that there was a dead cat under their stairs. Unfortunately it was our little Bandit- I guess he was probably hit by a car and then crawled . It was disappointing and sad. Especially since our neighbor's cute little dog was killed by a car a week ago. Sad week for pets :( My kitty is especially sad and acting weird.

So back to medical/cancer stuff:
Last Wednesday was my cardiac echo. I still don't have the results yet if you're wondering.. It was actually a pretty cool procedure. I just lay there on the table on my left side and the tech slid the ultrasound probe around my chest. I also had a 3-lead ECG. She let me see the screen which was amazing because I could see my valves clearly flapping around with each beat. I could see all the structures of my heart, and got to watch her measure the flow in each chamber. Very cool. She said that everything looked alright but of course the cardiologist has to read it.

Thursday was the CT scan. I forgot how long it takes! I was there for hours! First they give you two huge bottles of berry flavored chalk to drink (barium contrast). You drink the first one (choice of chilled or room temperature), and sit there for 40 minutes to let it digest. Then you drink number two and wait 4o minutes. The reason they do this is so that the first swallow gets to your small intestine and the second is still in your stomach when you get the scan. Anyways, then I get called for the scan, during which I get injected with yet another form of contrast. I lay down on the scanner and it goes back and forth beaming rays through me. Sometimes a little smiley face on the machine lights up to tell me to breathe or hold my breath (to raise my lungs to get a better image). After the scan, I have to go back into the waiting room for observation because some people react to the contrast. The whole thing took like 4 hrs.

Well that's it for now! Happy Solstice!!!

June 17, 2009

This week

I'm in a not-so-positive mood at the moment. I'm just crabby because I have been feeling bad and not sleeping well. And I'm getting pretty bored laying around all day- even if 70% of the time it's on the lake. At least I am getting tan. Yesterday I officially started my job hunt- I'm missing coaching so bad that I'm dreaming gymnastics. I hope there will be at least one team coaching position open, but I have to factor in the fact that I would have to work around scans and radiation AND clinicals. What a pain. I'm looking for nursing jobs as well, but it's the same deal with scheduling- PLUS the fact that I haven't really done clinical RN stuff in a year. I just need to get down and apply because at least I can start with options to choose from.

I decided that I'm going to be a painted cyclist in the Solstice Parade this year. I recruited some friends as well. For people outside of Washington, one of the Seattle artsy neighborhoods- Fremont- puts on a huge Solstice parade every summer, along with a street fair and "art cars" (cars decorated with the most random things) exhibition. One of the highlights of the parade is a group of at least 300 bikers who come out first- all in body paint and "au naturale," The painting jobs are usually pretty amazing, and people also decorate their bikes and helmets in streamers and paper mache figures. Last year there were two ladies painted like American flags, bumble bees on tandem, and a group of 3 Waldo's cycling around. I decided on a space theme and so tomorrow I'm going to buy some colors of textile acrylic paint. I won't say anymore about the experience until it's over- but this Saturday is the ride. Solstice is my favorite part about Seattle summer and this weekend should be awesome.

Well tomorrow is my cardiac echo and I will definitely report back on those findings as soon as I get them. As far as Thursday's CT scan- I'm not going to know anything until Monday's appointment with my gyn onc and I will report as soon as I know. (So no calling every second mom and dad!). I also should get my latest CA-125 count. Oh- I talked to the nurses and got the CT scan ok'd to include my neck. So now I can get a double check on the thyroid lump that's still there. The doc said it was just a lymph node and it isn't hard like a tumor, but I still want to be sure.

June 13, 2009

aaah so finals are over and now what...

Took my last final EVER today and passed! so the theory part of the program is pretty much done. All my classmates get to walk in graduation on Sunday- I'm really happy for all of them because of all the crap we've all put up with in the program- yet I don't think I can go to the ceremony. I'm still a little bitter that everything is taking sooo much longer for me- I don't get to walk until next years graduation- although I am scheduled to be done a quarter before that. I think it may be for the better in some sense, because I can ease my way back into clinical and will have nothing else to distract me. Clinical is what it's all about anyways. Seeing patents, diagnosing, etc... All that obviously needs some work, although I am getting first hand experiences all along the way.

For the past few weeks I have been noticing that I am having a lot of trouble climbing the hill from the beach and park to our house. It's not that steep, and takes about 1o min normally to walk home. Lately, however, i have had to stop walking five or six times to either catch my breath or because my legs were hurting. At the same time, I was having those palpitations that I talked about in the last blog. Well, today I had an appointment with my Primary Care PA for medication refills and so I mentioned this to her. She listened to my heart and verified that I had a harsh murmur on the left sternal border. (For all of you nursing crew- what's the differential?).

I have always had a hard time hearing murmurs- mainly because I have never really heard one, and secondly because of some post-infective hearing loss. I could barely hear it, but I knew that something was going on... The chemo nurses has asked me lots of questions about my palpitations but no one other than me had ever listened to my heart. In any case, she scheduled me for a cardiac echo- one more diagnostic test that I will learn about first hand to add to all the knowledge I've picked up this year so far. Basically this test is an ultrasound of the heart to look at its structure, blood flow, valves, etc.

So what could be going on with me could be three possibilities: 1.) I'm so anemic that my heart is working too hard to oxygenate my body. 2.) The paclitaxel or carboplatin chemotherapy drugs have cardiotoxic effects and may have damaged my valves. or 3.) I have bacterial endocardititis, an infection in my heart from my port-a-cath line.

I'm hoping for the anemia cause I know that already. I just have to wait and see if anything gets worse before Wednesday when I have my echo. Then, Thursday I have the big CT scan. Lots to look forward to (and lots of reasons for anxiety)!

June 10, 2009

CA-125 reading

I found this tonight as I was clearly procrastinating from studying for my final (at least this is medical!)

"in clinical practice it would appear reasonable to accept a confirmed (at least two samples) doubling of the CA-125 from a baseline value (with a minimum baseline at the upper limit of normal for the laboratory, usually 35 U/ml) as an indication of disease progression. Lesser degrees of change in the CA-125 value may indicate lack of response (so-called "stable disease") but should probably not be considered as actual disease progression in the absence of supporting data (e.g., new ascites, presence of a new mass on physical examination)."

also:
"In addition, even when the same lab is used, a variation of up to 14% can occur in the same patient."

So blah blah- my CA125 needs to go up to at least 64-84 to be significant evidence of cancer progression. I'm way under that yay!

I also read that CA 125 levels can have a cut-off of up to 200 to be benign disease- levels >200 are almost always cancer. Ha to all those people who told me that my CA125 elevation of 412 wasn't much to worry about! It was hundreds over the limit!!!

Some lady on a blog had a pre-treatment level of almost 6,000!!!

June 8, 2009

LAST CHEMO!!!!!

I'm writing from SCCA right now getting my last chemo! Yeaaaaaaaaaaahhhhhhhhhhhhhhhh!!! I was looking back at how often I wrote before and noticed that I write so rarely now. I think it's because I am just so sick of everything... Sick of being sick. Sick of planning my week around feeling sick. Sick of having no eyelashes. Sick of answering "how are you feeling?" I never know what to say cause when people ask me it's always a week after chemo and I am feeling fine. except for being tired. Tired because my sleeping problem has gotten so much worse. The other night I couldn't sleep at all and spent the next day in this zone. I'm immune to Benadryl and Lorazepam and pain killers. Nothing helps. I miss appointments the next day because I went to bed late, and then those drugs make me so groggy and unmotivated. It's hard to explain why I missed a 1pm appointment. I mean seriously, it's retarded that I can't get up at that time. Especially now that it's getting so nice out.

I have been enjoying the weather. I've been walking to the beach almost any sunny day- especially during our 80's heat wave. Now it's around 60-70 so not so good. I like being sweaty ;)
This week I hope it's going to be nice. I have my big final on Friday and I'm worried. It's always ridiculously hard in these theory classes. Especially when you get a powerpoint with 262 slides. It's not going to help that I know I'll be nauseous and not want to study. I just want to lay in bed and do crosswords and watch "Freaks and Geeks"

My blood counts this week are still super low- even after the immune-boosting Neulasta shot. Hemoglobin and Hematocrit are 9.9 and 29% when the norm is supposed to be at least 11.5 & 36%. White blood cells are 3.4 when they should be 4.3. I don't feel any of this of course, and have had no problem with infection. I have noticed that I get palpitations- meaning that I can feel my heart beating against my chest once in awhile. It usually happens after I climb the hill from the beach to my house, but sometimes it occurs randomly at rest. I think my autonomic nervous system is just screwed up. My blood pressure is still really low- 100/70- last time it was 99/63 or something like that. So when I stand up I am really dizzy and have to hold onto a wall or something or else I will faint. It kinda feels good, but I am at risk for falling. I can't explain why it's so low because I drink lots of water and don't work out that much. Oh well, must be the chemo.

What's weird is that I am growing hair again. On my head there are some 3/4 inch hairs - some are brown and some are blond. I hope it goes mostly blonde. I was looking forward to that! In any case, it's sparse but all over. My eyelashes are totally gone and my eyebrows are half-way gone- like I plucked them from the middle out. But near the nose side there are tiny little stubbly hairs. I don't get it- why is it falling out on 1/2 the brow and growing on the other 1/2? I guess the new hairs are pushing the old ones out? In any case it's going to look pretty weird with stubble eyebrows. Better than no eyebrows I guess...

So I have a CT schedule a few weeks from now, and then meet with my doctor a couple of days afterwards. I'm pretty nervous about it- what if they find something? that would be devastating. Sucks to have to do another round of something else. It doesn't help that I got my last CA125 and it was 20. Last time it was 7 and it generally has been ranging from that low to 12. I asked the nurse about this and she said that sometimes it can go up from allergies- which I do have a runny nose all the time. I hope that's what it is because that's at least twice from the highest point of my range. Hope hope hope it's not going to go up again- the next blood draw is 2 weeks from today. I have to wait that long to get the results. If it goes up again than I am in trouble... I know one thing that it could be- I have been so sick of smoothies that I have been pretty inconsistent in making them in the last month. Maybe they really were helping kill the cancer cells if I had some left. In any case I am definitely starting them again from today on. I'm just sick of fruit..

In two weeks I start clinical again. One day a week starting 1/2 time at a place in the Northgate area- about 30 minutes away. I think I'm ready but apparently my professor doesn't think so. She wants the preceptor to watch me do a full physical exam and history- two things which I think I am pretty good at. I haven't lost any of that. What I was just beginning to learn and will have problems with is diagnosing again. What really pisses me off is that she is making me redo my midterm and final- where she also observes me. It's nerve racking as hell. Especially with her. A couple of Fridays ago she pulled me aside during our break to tell me about possible clinical sites for the summer. This is sorta how the conversation went: I had told her that I wanted to be in Seattle- something which is not that unreasonable. She start freaking out and telling me that she didn't know if she could get me a site as they were trouble finding them as it was. I asked her why, because I had a SEattle site this quarter- why couldn't I go back there? Nope too hard to find one she says. Then I told her that I was thinking about radiation. That really got her going. You never told me that! That complicates everything! How come you didn't tell me that? When is it? What's the schedule? I have to know the schedule. No preceptors going to let you go 1/2 time... etc etc. Well I told her that I didn't know because I hadn't talked to the therapist yet- they were going to call me sometime after chemo. Well she goes on a rant: Amber you need to know this stuff. You need to get on top of things. You never keep me informed and you need to tell me things. Now I don't know if I can find you a site... Anyways, this goes on for 10 minutes right in front of the classroom door and her tone is not night nice and she is yelling. I had to explain to her at least 5 times that I didn't know and that I'm not at that point yet. I ended up ending the conversation by telling her that I had to move my car and walked away. The whole situation left me pretty pissed off. What does it matter- no preceptor has ever cared that I left early so why should this new one care? Why couldn't she just find something and I could discuss it with the preceptor? Why are other people getting placements in Seattle when I really really need one. The school hired someone to find clinical sites so why was she involved anyways? Most of all, I HAVE WAY TOO MANY OTHER THINGS ON MY MIND THAT ARE MORE IMPORTANT THEN ALL THIS STUPID CRAP! Shut the fuck up! Arghhhhhhhhh. She ended up finding me a closer site who would take me 1/2 time if needed. God I knew it wouldn't be such a big deal. She needs to get control of her stress cause this was totally inappropriate. If I am going to have to work with her this coming quarter than I am going to have to step up and tell her to stop yelling at me for stupid shit and speaking to me so inappropriately in front of my classmates. I mean, geez, I can't even ask her a question without her biting my head off. At least I know it's not just me- I think everyone has to deal with her bipolarness.

Well that's all for now. Wish me a good week of studying and luck on the final!