Snoring Away

Well woke up at like 0330 and can't fall back asleep. I realized going through all of this you can't really get on a schedule. I get tired and I want to sleep, if that's 5pm then I sleep but then end up waking up early. Yesterday was a long day for me and a bit disheartening so even though I was exhausted I only slept for about 5 hrs last night and now I'm awake. Decided to go ahead and update away while my brother snores his little butt off a couple feet away.

We had to leave for SD at like 445 to get down there by 800. The plan was to get down early and finish so we could leave by noon to miss traffic. We did pretty good but it was really rough for me while I was there. Oh just to tell everyone they've had to put me on a permanent pretty high dose of pain meds until I get better. Didn't think I was in so much pain but I notice real quick when I've fallen behind on taking it. Anyways, my doctor and I had all these things we discussed(because it's the only time I can see him so we end up deciding things last minute) and I start not being able to pay attention and sweating like crazy. He examined me and put me on diuretics as well as a standby bottle of extreme stuff to add if it's not working to try and get my uncomfortable swelling down. He told me I'm going to pee a lot but try to not hydrate as much anymore. I look at him like he was crazy. He said "seriously, I know your an athlete and you know how important staying hydrated is but in your situation it's not hydrating you, it's hurting you. bout a liter and a half a day and that's it. Trying ice chips works wonders" How do you go from pretty much 2Gal a day to a liter and a half? I said "so you want my piss to be dark?" He said yes so got to start trying it. Anyone that knows me knows I'm not a happy person when I'm not hydrated hehe but if it'll help the swelling great.

We also talked about doing radiation on this tumor on my leg because it's literally growing by the day. We got it all set up but by this time I realized I was way past due for pain meds. The radiologist wanted to keep me to do a quick Ct scan of my leg to get a depth on treatment so we can start next week. I asked if I could go do chemo first because I know I could get pain meds and I'd be great to stay there for awhile but all he cared about was himself and making things convenient for him. He said it's only 30-45min. Yep I no that, that's about an hour and a half. So I basically told him to piss off. Now I got to call my doc to try and mend the burnt bridge and explain to the other doc why I did what I did.

I've realized only genuine people care about others and I could tell he wasn't one of those people and in my situation right now I've learned to be first. I love to help others anytime I can but when it comes to me starting to be in pain anything close like I was the other night hehe I'll leave it at that.

I really hope I'm starting not to talk to much on my blog, if I go to much into details please let me know I can shorten it so I keep everyone entertained better. Last thing, on top of everything else my doc decides to show my mother my most recent CT scans I got and explain them to her. I was excited because I personally have never seen anything like this they always just read me the results. It was crazy to see how much the cancer has taken over my liver, my lungs were still looking pretty good, but now I have problems elsewhere. My doc also showed how my digestive tract was working and only about half of tract is getting anything in it. Tumors have decided to embed themselves in the fat lining of my tract and my doc also said that the cancer has probably spread elsewhere we just can't see it yet because there aren't enough of them together to show up yet. I wasn't even upset at the moment. I still don't know how to feel about everything probably why I couldn't sleep that well. I've emailed UCLA to see if I had gotten a pelvis scan included when I was there just 3 weeks ago to see if it spread it that amount of time. I think I've just gotten so used to getting bad news that I expect it. My doctor is so positive and he tells me yesterday, "I'm not calling you terminal, I'm not giving up on you and I don't think, by the time I've known you that you are ready to give up either.............are you?" It's pretty amazing to finally have a doctor on your side that thinks that way and actually cares. He will definitely keep the motivation up:)

http://www.eatmoveimprove.com/2010/03/cracking-and-popping-and-clicking-oh-my/

Holy Crap!

I never thought a human being could endure as much pain as I have over the past few days. Being on a daily extreme roller coaster sucks really bad. I can't plan anything, everything has to be spur of the moment. Friday I felt pretty good, was able to do some stuff around the house and make phone calls to people I needed too. Saturday morning I woke up at like 0430 in throbbing bone pain in my lower body. I don't know how to even explain it. My family was getting in at 9:30 that night and I wanted to go and pick them up with my roommate. I doped myself up that day and off we went to the airport. By the time they got in the truck I was in so much pain I had to get into a zone and just concentrate mentally. Told everyone to leave me alone and I did what I could. By the end of the ride we were getting off the highway to go to the ER not home. Had a horrible experience at the hospital that I don't even want to explain but after they gave me a ton of good meds and sent us on our way it was 645 in the morning. Yah like 8 hrs in the "ER".

Since then I've just been staying a bit doped up so I don't have to go thorough pain like that again. I've been sleeping way more than I want to and just trying to walk little steps here and there because my belly is swelling again. Oh and that tumor on my leg has gotten massive! So big it's starting to bother me. I know once I get a few more chemo treatments in me it will start to shrink so for now just trying to deal with it. Tomorrow we head down for my next treatment speaking of which. I'm just ready to start feeling better. I can't stand this anymore. I'm ready for my organs to be operating on a normal basis. Well I'm kind of nodding off so I'll let you guys go and I'll try to update once I get my second dose of "hazardous materials" run through every part of my body.

http://www.paleobrands.com/2010/03/09/vit-d-and-muscle-mass/

First Chemo

Well I'm getting released out of the hospital today! I'm pretty excited considering being trapped in a room all day for the last 3 days. Also, my mom and brother are flying out here to stay with me for awhile...I'm really happy. Having my family here is going to put me in really high spirits and help me to fight this thing off for good.

I got my first chemo treatment yesterday and it wasn't that bad but then again they don't have my on the extreme types of chemo. I start my other one in 2 weeks. We will have to see how that one goes. I was really hot during the treatment and had severe cold sweats last night when I slept. It was the worst I've ever had. I woke up soaked like I had just jumped in a pool. I'm so happy my friend Kaarla had been at the hospital with me because she really helped me out while I was here even though I'm so stubborn when it comes to caring for myself:) Thanks Kaarla. True friends are the best! I'll just keep all of you updated because who knows how I'll feel as the chemo continues. My liver swelling is still constant but the hospital was great about having me on pain meds since I've been here and it feels sooooooooo much better. Especially today. I can walk around without being crippled, I can stand all the way up straight again, and I'm even breathing a bit better too. Hopefully they send me home with some pretty good stuff so this can continue. Also, haven't told my mom yet but we are going to go shopping while she's here. She's going to help me get some scarves and bandanas for my soon to be bald head and a bit of make-up too. It'll be a great and emotional experience for both of us. For those of you that don't know me my mother was diagnosed with a severe case of breast cancer 2 years ago. She went through chemo and lost all her hair. It's still growing back now but she's as beautiful as ever.

One last thing before I end today's post. I know a lot of you kind of know what happened leading up to this but I have new readers and some people are a bit confused by everything so I just wanted to clarify my history so everyone knows:)

This is my 3rd recurrence of Melanoma. I had skin Melanoma on my right leg 4 years ago. It wasn't under the skin yet so I was Stage 1 they just removed a hugh portion of skin and stitched me up. Then last year in Aug I found just a little skin colored lump under my skin on the same leg as before but it was up near my groin area. I had scans done and it was all located in that area(from what they said). I was considered Stage 3a. I went in for surgery and they did a lymph node dissection of my right leg. This consists of removing all your lymph nodes (I had 16) and tissue, they cut my Sartorius muscle off my hip, rerouted over my Femoral artery (there was no more protection for it once everything was gone) and other major veins (one they actually cut a piece out of because it was part of the tissue and no they don't replace it just stitch it up), and attached it to my inguinal ligament (which is the crease where you bend your leg). Pretty major surgery and I lost all sensations off the top of my leg down to my quad even still today. Started rehab and transfered to Cali to finished adjuvant therapy (what you get to try and prevent cancer from coming back) at UCLA. I was enrolled in a trial there and had to get updated scans because they need them to be with in 30 days for it. I my last set in Sep and it was now Nov. UCLA gave me the results of these scans, multiple lesions in the liver and lung with the biggest being 2.8 cm. So they could no longer enroll me because I was not considered disease free anymore. They enrolled me into another trial, that was the one I just got taken off of and now here I am today with chemo. I really hope this clears it all up for everyone. I will be still be posting my links of learning when I don't have so much to post:) Stay tuned and have a happy Thursday. Go eat a really big ice cream today for me!

BIG Update!

Ok finally got a few minutes to talk to everyone. I've been so busy the last couple days that when I got free time I just slept because I'm in so much pain as well. I wanted to let all of you know what has been happening the past few days.

First, I want to remind everyone that I started this blog for all of you. I have repeatedly told people that I post so I don't have to repeat myself 50 times. I already have 2 parents, my chain of command, and doctors that I have to do that with. In the condition I'm in I don't have the energy or breath to talk to everyone, I haven't been feeling well enough to talk and sometimes I like to just be left alone. I'm not saying this to offend anyone by no means because it truly keeps my spirit up to know I have so many people that care but I'm so worried about my treatment right now that I don't have time to talk to the 9 people that have been trying to get ahold of me. Sorry guys!

Alright, as most of you know I went to UCLA yesterday to find out results. I prepared myself for the worse because I could feel the changes in my body and the tumor on my leg was growing. The bad news came. I'm already not responding to the trial at UCLA. My tumors have grown. The doc also said to me "Amanda, you remember when I told you that people will respond but it's only for a period of time?" I said "yah" he went on to say "Well I never thought your time would be so short. You had the shortest response time than anyone else on the trial and you have THE MOST aggressive case of Melanoma I've ever seen". Thanks doc. Let me just remind you that this is a doc that specializes in Melanoma and has been doing it for years. Why am I the lucky one? I've never had the best luck with stuff and have always had to work my butt off for anything and I wasn't expecting this to be any different but it just sucks. We sat and talked and he threw another trial out at me but it just opened this much and they don't know enough about it. I told him I needed time to think and wanted to talk to some other people. I also had to go into dermatology while I was there so they could get a biopsy of the new tissue in the massive tumor on my leg. As I was sitting down with the derm he goes on to tell me that my doctor is actually uncertain what to do about my case. The problem with my case is that with it being so aggressive a week could make a difference so whatever decision we make is probably the only chance we get.

I had one of the girls from work driving me home and I pretty much just sat there in silence the whole way home trying to think about everything and gather my thoughts. It was a huge bummer to find out news like this. I kept thinking "maybe the statistics are right, people diagnosed with stage 4 melanoma are dead within a year, and geez will I even make it to see 25, how did it happen so quick? I just competed in the CF Games less than a year ago and now I'm dying." I've learned that you just get put through trials during life and you got to accept it. By the end of the night I was in excruciating pain. Talk about pain that is crippling people, you take one step and you want to collapse on the floor. Thank God Tony is around. He's been an angel since I started getting worse again. I wanted to go to the ER so bad last night but knew that I am risking my treatments if I did so I sucked it up for something better. I also managed to call my doc down in San Diego as well yesterday so we can discuss my next option. It just so happens I had to come down to SD today for my medical stuff I'm going through to get processed out of the military so we set things up so we could meet.

Tony was able to drive me down because I'm in no condition to drive with all the pain. The doc and I sat down for about an hour and discussed about 3 options and decided on the best one that I needed right now (because my liver is very close to failing again my body can't handle the other 2) Doc went on to say "we can outpatient you and it'll take about a week", I told him "doc how about we inpatient me because I don't think I have time to wait. I already called my chain of command and told them I might be staying down here because of what's going on. They are 100% supportive (they've been amazing too). He did an exam on me, felt my liver and said "wow" "ok""I want to start you right away". So now I got admitted to the hospital so I can be on standby for more scans (they need updated in their system), I'm getting a port installed in my neck, and by tomorrow or Thursday I should be starting my first round of chemo treatment. Yep chemo. Great. We decided on 2 different types of chemo and they have about 70% response rate. It's once a week for awhile. The doc said he hopes this can reverse what's going on a bit so we have time to get me on better treatment. I just want to remind everyone that response rate is not a cure rate people. That's means you can relapse. That's what just happened to me on the trial. Well I think I told you as much as I can for now. I don't want to write a novel and I'm going to try and give you guys daily updates since I'm restricted to a hospital:) plus I go for my Ct scan in about 30 minutes (9:00pm) so want to just relax for a few minutes. We all have to just keep praying. The lord does answer prayers:) Amen

Friday

Well another day down and it's the weekend. I'm pretty nervous for Monday. To find out the results from these scans.......we will know how this treatment is working for me.

I woke up this morning and decided I wanted to cook breakfast. I was tired of boring. I decided to cook pancakes. When I went Paleo, breakfast was the hardest thing to get it to taste good for me. I used to love pancakes, waffles, or french toast and now to replace it with substitutes was almost unacceptable for me. I have done many trial and error since I've started trying to make the perfect paleo pancake. First I started with the main ingredient of almond meal. Disgusting, to dry. I messed around with it a lot, trying to make the batter thinner and thinner so I wouldn't have to use half a bottle of maple syrup to make it taste better. Once it gets thin though you have to cook one pancake, forever, I don't have time for that. Recently I have found a good recipe that is chocolate coconut pancakes. Pretty good and no almond meal. I have found recipes that use a banana as the base and always put it off because it's pretty high in carb but decided to do it this morning and wha la, talk about a delicious pancake. It's the first moist pancake I've had since I switched and you honestly don't even need syrup if you don't want to. I put just a tad of organic strawberry jelly on it and it was awesome! I will give you the recipe just in case you want to try, oh and they cook like regular pancakes (don't take forever):

1 banana

1 egg

1 egg white (whisk stiff)

about 1/2 tsp baking powder

vanilla, cinnamon, salt (however much you want)

butter for pan

Mash banana and mix in egg and egg white. Batter should be a bit lumpy. Add rest of ingredients and mix. Go easy on the butter in the pan. I used just a little and it was almost to much. I like BIG pancakes and this made me 2. It was enough for me. Try to flip it before it gets black even just a little black and they will be perfect. Enjoy!

http://westside-barbell.com/westside-articles/articles2008/SPECIAL_STRENGTH_jan_2008.pdf

Sorry:(

I kind of got a wake up call today from my friend wondering why I'm slacking on my blog. Sorry! It's really hard to keep up with the simplest things when I don't feel well. I just want to lay down all the time. Oh, I know this is totally off the wall but it's something I need to tell you guys about. I've started watching the travel channel a lot lately and love it because of all the different interesting things they show including.........the food:) I was watching this show called "101 Chowdown Countdown" , basically they traveled to 101 different places in the US with the best/odd different types of food. Let me tell you, some really good stuff that I wish I could just travel to all these places to try, but one really caught my attention that I'm tempted to make myself. It's a cheeseburger and the bun is a Krispy Kreme doughnut. No crap, not kidding people and they put the doughnut on the grill with the burger so the juices soak in. Sounds like it would satisfy every craving. Think about a protein style In-n-Out burger with that! I'm so going to do it on my cheat day. HA!

Ok I'll get off the food. So UCLA canceled my appointment I was supposed to have yesterday because they don't have a copy of my baseline scans. Figures. Remember how unorganized they were before, this doesn't surprise me. They had to call SD and get a copy so they have something to compare my new scans to. I go on Monday now along with seeing a derm while I'm there. Then Wed I have to be back in SD for my VA appointment. Another busy week so trying to get rested because I don't want to run myself down again.

I really wish I could be back in the gym again. I really miss the people and the atmosphere. Colin went up to Canada 2 weeks ago to start in the OPT process of getting certified and it looks like OPT once again has done something amazing for the Crossfit community. He is a genius and it looks like he is putting out some real valuable knowledge. So from what I can tell, people if you get a chance, DO IT. Here is Colin's take on it: http://www.CrossfitVentura.com/crossfit_ventura/2010/03/visiting-the-opt.html

I'll post one extra too:

http://www.futurepundit.com/archives/005141.html