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Mandy
05 January 2008 @ 08:06 am
Mandy's battle with cancer ended, and her next journey began, this morning. We are very sorry but we are not strong enough to have visitors at this time.  We thank you for all of your support.
 
 
Mandy
03 January 2008 @ 12:21 am
It is with a broken heart that I must let you know that Mandy's oncology team has determined that there are no further treatment options. Mandy has fought hard and long and we are attempting to accept that multiple forms of treatment, force of will, willingness to accept side affects each more vicious than the last, hope, prayer, and the love and support of many family and friends have not resulted in any break from the affects of this vile cancer. You, Mandy's family and friends, are invited to visit with Mandy at our home, over the next few days. 

Due to Mandy's condition, we do ask that if you have any symptoms of illness please call but do not come to visit.   
 
 
Mandy
23 November 2007 @ 04:05 pm
Thank you to everyone who has been worried; I apologize for the lack of response. It's just been a hectic couple of weeks. I am doing OK, and will post more details soon (I promise!).
 
 
Mandy
24 October 2007 @ 03:15 am
I am now starting to feel marginally better, after a week and a half of being incredibly sick. Radiation will continue as scheduled, but I am stopping the Tarceva for now, because the side effects are just too much for me to take in combination with the radiation. Tarceva is chemo, after all, just in a pill instead of IV, and radiation at the same time is just too toxic. I ended up getting IV fluids at the hospital today. I think I will probably get more tomorrow, because I was so dehydrated. I simply cannot drink enough orally to maintain hydration. They may just do a standing order for IV fluids, and I can go in whenever I feel I need it. Tonight's the first night in about a week where I've been able to hold down any sort of solid food, so hopefully that will continue and I'll be lots better by this weekend. So, with that, I am headed back for bed and let my body just keep chugging away to help me get better. Thanks for all your well wishes!
 
 
Mandy
15 October 2007 @ 09:00 pm
So I've been taking Tarceva, the miracle drug that has worked for other lung cancer patients, keeping the cancer at bay and prolonging their lives by 2-3 years. For those of you who may be tiring of the physical details... I am sorry that I have such gross things to report. But my body is ruling my life right now, and I spend an inordinate amount of time catering to it, so, naturally, I have some things to say about that. And, if you're reading this, then you feel some desire to know what's going on with me, so... That's what's going on. Feel free to skim or skip the next paragraph. But, if I can make someone else laugh at my foibles or feel not-so-alone, then I'm happy to do a little self-depracation and share the unvarnished truth.

I got the rash that was supposed to mean the Tarceva was working. I got some medication to help with the rash, and some lotion to help with the dry skin. Unfortunately, no amount of medication has helped with the diarrhea. I'm talking 4-5 times/day with pure liquid. My ass is so raw, it hurts when I fart. Once, I woke up and I had shit the bed before I even realized I had to go. Yes, I'm actually admitting to shitting the bed, because I could not help it, and it's one more humiliation in this long string of indignities my body is going through. Maybe it will make some other cancer patient feel a litle better that they're not the only ones who have shit the bed. I started wearing Depends to bed like some incontinent 90-year-old. In case you're wondering, yes, they are as uncomfortable as they look - more so, probably. Apparently adult tender areas don't need cottony softness like baby bottoms. Bastards. Anyway. So, I'm going along, taking this medication that is causing continual diarrhea, dry skin, and acne, because I'm convinced that it's worth it. I can swallow my pride and deal with Depends if it means I can postpone taking a dirt nap for 2-3 more years. (I think we've all said things like, if I start shitting my pants, just shoot me; or if I have to go to a nursing home, just push me off a cliff, wouldya. My list of things that seemed unlivable just months ago has now shortened considerably. I've found I can live with a whole lot more than I ever thought I could. Quality of life has nothing to do with embarrassing things like relying on Depends once in a while, but with how much of your life you can enjoy, despite the drawbacks.)

I met with my oncologist on 10/05/07, and had two MRI's and a CT. The scans showed that the Tarceva is not working. There's a small chance that the Tarceva just hasn't kicked in yet, but it's a very small chance. In fact, the cancer has now spread to my brain in six places, as well as getting bigger in all the other spots. The spots in my brain are tiny, but they are there, and there are at least six. The doctor recommended radiation, then possibly more chemo with different drugs. Life expectancy is 6 months.

I spent the weekend after getting that news feeling like I'd gotten kicked in the gut. I really, really believed that the Tarceva would work and I would have a couple of years. I believed, and I feel betrayed. And angry and sad and scared. I've always valued my mind and intellect more than anything else - body, emotions, whatever. My intelligence has always been my strength. And knowing the cancer has invaded my place of strength is terrifying. Six months is not nearly long enough. It's just not.

After talking to my family and the doctor, I decided to continue taking the Tarceva for one more month to see if there's any chance it's going to work if given more time. I'm not ready to give up yet.

I met with the radiation oncologist, Dr. Werner, on 10/11/07. We decided to start the brain radiation immediately, that day, and radiation for the chest and lumbar spine the next day (those areas required some setup that could not be completed the same day). We are not radiating the primary tumor, the one in my lung, because it would be too much area to radiate all at once. We may radiate that area at some point in the future, maybe. That will also be an area to watch to see if the Tarceva is working at all - if it is, the tumor should shrink.

To get set up for radiation, I had to lay on a plastic bed (like in an MRI machine), naked from head to pelvis, while the technicians poked and prodded and measured and wrote in permanent ink all over me. I looked like a very squishy treasure map. (I still do, actually, that permanent ink is the devil to get off in the shower!) These technicians were not shy, either - there was no "OK, we're going to lower your gown now so we can measure the placement; are you warm enough; OK, we need to pull down your pants a little to map this area..." Nope. It was just off with the gown, and they would lower my jeans and panties themselves, thank you very much, as I was not to move. Very strange to have someone you've just met pulling down your pants for you while you're essentially strapped to this bed. (I will have no comments from the peanut gallery on that one! hahaha) Ultimately they tattooed about 10 spots permanently onto my skin - the marks they line up to be sure the radiation beam goes to the right place. The tattoo spots are tiny, but it's like having blackheads on your skin, they're ugly. I may have to fancy some of them up with tattoos around them. To get set up for the brain radiation, they had to make a "mask" of my head. Essentially, there is this thing that looks like a tennis racket, with plastic with holes in it instead of strings. They warm the plastic and push it over your face and head until it hits the bed, where they lock it down. Once it's cool, it's set, and it's used every time for brain radiation, to ensure that your head is in the same position - pressed to your skin, and locked to the bed. Not for the claustrophobic, but actually, not as bad as I feared.

The radiation process is easier and quicker than chemo, but the side effects are still not good. I was nauseous on Thursday after my brain radiation, and spent the weekend puking and coughing and having diarrhea and being in pain. I have some anti-nausea medications now that I hope will work - one oral and one suppository. (Yeah, gross. But necessary, since it increases the chances of at least one of them staying in my system long enough to work.) I'm also fatigued. I can't speak more than two words without starting a coughing fit. I've taken to whispering or writing things down. Seriously, it's that bad - my throat is so sore. And I'm fatigued again, like chemo - sleeping a lot, alternating between the bed and the couch, not much more. And I'm pissed that I have these side effects. Radiation was supposed to be a walk in the park - no side effects until treatment was pretty much completed, and then just some fatigue, mostly. Apparently my brain is super-sensitive to radiation, and is going "WTF?!" There is some hope that my brain will figure it out after the first couple of treatments and settle down, go with the flow. Cross your fingers, please? I will finish radiation on 11/01/07 - fifteen treatments for each area, approximately 45 minutes per day, 5 days/week, for 3 weeks. At least the radiation is in Olympia, so I can be at home every day. My mom is staying with me during the week, and my sister is taking the weekend shift. Fun times.

So, after radiation is completed, I'll see Dr. Eaton at SCCA again to set a new treatment plan. Hopefully the radiation will have worked and eliminated the cancerous spots in my brain, and taken out or reduced the cancer in my chest lymph nodes and spine. I'm not sure what will happen next, I'm just focusing on getting through radiation one day at a time.

I'm starting to wonder at what point we stop treatment and allow me to live as best I can without side effects from treatment. I'm not ready to consider that yet, but it's something that has crossed my mind, and may be approaching much more quickly than I'd like. I remain realistic, but also hopeful. Maybe there's something just around the corner that will turn out to be a miracle. I hope.
 
 
 
 

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