Thursday, July 31, 2008

Blow Out

We left town early in the morning, 4am to be exact. We stopped around 7am to grab a bite to eat and then headed over the grapevine. I was awake and talking to Sebastian, and watching the road. All of a sudden it sounded as if we hit something, but I didn't see anything, so I ask if it was a tire? He started to slow down and see, and the car got shaky. So we knew. Yep. We had a blow out. Luckily there were not too many cars around. We pulled over and waited for AAA to come out. It's scary on the side of I5 with all of the diesels driving by! We waited about 30 minutes, but once they were there they were fast. The funny thing is we didn't take our Mercedes because I blew a tire one time by hitting a small pot hole. Low profile tires blow easy. So all week Sebastian contemplated what car we should take. He kept saying, let's take the Explorer, it's safer. Proved us wrong. At least we made it here to Riverside safe.

Wednesday, July 30, 2008

Packing My Bags

I'm packing my bags. I am going back to Riverside in the morning. I check in @ Dr Gailani's office at 2pm tomorrow. Another round of Advanced Bio-Chemotherapy. Since this is my second time, I kind of already know what I'm in for. The only thing that scares me is that this time will be much worse, because I haven't even recuperated from my last visit. I'm now getting out and doing a few things, but still very limited. I have others do things for me as much as possible. Bending down to pick things up is a chore. And now that I'm feeling better, I'm gonna go get loaded up with medicines again. But as all the doctors have told me, and Kathie even re-iterated today, I'm young and my body can handle it. I am strong and will get through these treatments, no matter how rugged it is. There is no wi-fi at the hospital, so there will be no updates until I get home, unless Sebastian or Reanna want to do it.

I hope you all have a fabulous week/weekend. I know I will! Forgettable, I'm sure.

Monday, July 28, 2008

Bye Bye



The time has come, and we must say bye to Twinkie. I say this with a sad and heavy heart. Sebsastian and Paige took Twinkie to the vet this morning. I didn't hug her because I thought she'd be back. Oh how I wish I could pet her and give her just one more hug. And smell her stinkie breath (her nickname is Stinkie Twinkie) just one more time. I thought they were going to do bloodwork and call us back with results. But that didn't happen. The vet told Sebastian that she is up in age and suffering a lot. I wish he brought her back home. This is her house. This is where she belongs. With people who love and care for her. Our house will never be the same without her. She started out as our watch dog. But not only was she our watch dog, she was a member of our family. I grew to love her and would always stick up for her when Sebastian would get mad at her. Oh, how we are gonna miss her. I cant's stop crying. Will the pain ever end. We have never had to do this before. My heart hurts, as does the lump in my throat.


WE LOVE YOU TWINKIE.


Saturday, July 26, 2008

Before & After


My sister Maria was able to find a pic with all of us before! I know all my cousins are gonna be mad, oh well. Too bad. I wouldn't have posted it if you could see all of me :) I got the best spot, ha ha. The pic above is my sister Liza and her sister Debbie in the very back, then row 2 is Michael, me & Kenny, row 3 is Chrissy, my grandma & Vickie.

In the photo below its Kenny, Michael, me, Vickie & Chrissy.

Twinkie




Here are pictures of Twinkie. I just love her! The first is of her in Butter's new bed. She had her own, and it was big, but she likes the smaller beds. Crazy, I know. The second is her in the kitchen, and the last is her in bed in our room. She has even gotten into the tiny brown one in the corner. Yep, she squeezed into that one too. I thought I had a pic of her in there, but I can't find it!!! When I find it, I'll post it.

Friday, July 25, 2008

ABC

I feel most of the time I was in Riverside I was in a fog. I remember my first day there. We got there about 3am or so and checked into our room. We woke up around 8am or so and drove across the street to the hospital. We just wanted to find where we would be at. Once we knew where the Oncology Dept (The ABC clinic, which stands for Advanced Bio-Chemotherapy) was, we went to breakfast. After breakfast we showed up at Dr Gailani's office. Everyone there was so nice. The first lady just took me back and took my blood pressure, etc. It was low, and we told her that for me that's normal. Sometimes I'm normal, and a lot of times it's low, so I guess low is normal too...crazy, but it's true. Anyway, after that we waited a bit and then we got called into the physicians office. Dr Gailani's assistant came in and had my whole medical profile there! She asked me questions about my whole medical history, some stuff I had even forgotten about. But yep, she had notes on just about every visit I ever had, even pre-cancer. It was crazy! Then Dr Gailani came in the office and asked me all the same questions. They are really thorough and want to make sure nothing gets past them. It seemed repetitive, but in a way its good. While meeting with Dr Gailani, I learned that I have Metastatic Melanoma. For some reason I thought that metastatic was when it went to the brain, but I was wrong. Stage IV is metastatic. There was a chart in his office, and he asked me where I thought I was on the chart. Well, obviously I knew I was in the bottom stage. But I didn't know where. There are 3 stages of stage IV. I told him I knew it was in my liver, but the words that described them all didn't have any organs. So I told him I wasn't sure. He looked at me and told me I'm M1c. I'm in the bottom stage. There is no worse stage I could be in. Of course the statistics on the bottom stage was the very worst. Sebastian just sat there and started crying. My heart was going out to him. I did not want to break down in front of the doctor, and I think I kept my composure pretty good. But I kept looking at Sebastian and all the fear in his eyes. He was not taking everything very well. My dad was with us, and he was visibly upset also. The good thing is, he is a very good doctor, and he says that those statistics are not for everyone. His treatments are very good, and hopefully those statistics rise due to his work with melanoma patients! Right before leaving his office, Robin stuck her head in and introduced herself. She is extremely nice & helpful.

After meeting with the doctor, they took me over to the hospital section into the ABC wing. I didn't realize there was a whole wing just for his patients. I was very happy that everyone gets their own room. YEAH. I didn't have to share with anyone. So a few minutes after getting me to my room, they wheeled me down to ground level. They took me to this room with a lot of nurses around. It was where they inserted a tube in my neck. When I got down there, the nurse was really nice asking a lot of questions. He asked if he could pray for me, and I said of course. So right there while I was lying on the procedure table he prayed for me. It was really nice. After that, a dr came in and inserted everything. I was shocked at how many people were needed for this procedure. When I got my picc line, it was just one nurse practitioner. Here there was at least 5 people. I wonder if it was because it was in my neck versus my arm? And of course they used tape to keep it in place, and my whole neck got red and itchy. Anyway, after that they wheeled me back to my room afterwards and started hydrating me. The first day they just have IV's because they want to make sure you are properly hydrated. The next morning I started the treatment. Much after that is a fog to me. I really don't remember too much, mostly what my dad & Sab had told me. I do remember that on Saturday my cousin Chrissy (aka Louise) came out to visit me. She was supposed to bring a helmet and break me out, but she didn't! We did get in trouble though because they had given me chemo in my IV, and we left the ABC wing and were walking the hospital walkways. Little did I know that was a NO NO. With chemo in my IV, I can walk around, but must stay in the wing, which is very small. Guess I won't do that again. That night or maybe another night, I don't recall, but I had a high fever, 103. It wasn't coming down, so they made me got off the bed, and they stuck this cold blanket on the bed and made me lie down on it. Everyone who knows me, knows how much I love the cold. NOT. Then they laid 5 ice packs on me. It was sheer and utter pain. I hate the cold. They made me lie and sleep on the blanket all night. It was even connected to this a/c machine or something, so it was like 52 degrees. I was hating life. The next morning my temp went down, so they removed it. I was soooo happy about that. Later that day, my temp started rising again, and immediately they were being proactive and started putting ice packs all over me. I hate that, and I started moving them so that they weren't touching me. I remember the nurse got really mad and yelling at me, and I just remember thinking, I don't care. I'll move them when she leaves again. But Sebastian was there and he wouldn't let me move them. And he also took my blankets away! Luckily for me, my temp never got too high again. Most of everything else in between all that is forgotten. I do remember get a phone call or two, but that's about it. I think my sis Maria called me once, but I don't even know who else. So if it was you, I'm sorry!!! Even today Sab told me the day I was released we ate KFC back in the room. I do not recall that at all. He said I had a piece of chicken with potatoes & mac n cheese. I looked at Sab stunned. I do not recall eating chicken? I was asking what kind it was, what piece was it? Crazy how I've done things that I can't remember. Anyway, I do remember waking up first thing in the morning and Sebastian driving us home. I slept the whole way :)

Wednesday, July 23, 2008

The Party's Over

Yep. My pity party is over. I really hate to be a downer, but that was just bugging to get out of me.

I keep looking at our beautiful boxer Twinkie. I love her so much. She is really getting up there in age, sometimes can't hold her food in very well, much like me! But she is so graceful. I have this feeling that she is in so much pain. But she humbly accepts it like a lady. Me, I'm far from that. When I'm in pain, everyone knows. I think even my neighbors can hear me yelling & moaning. I'm not as graceful as Twinkie. I hate to say we may have to put her down soon. She has been with Sebastian longer than I have. We are all having a hard time dealing with this. We are taking her to the vet next week to get her checked out. I hope she is o.k. I'll post a pic of her as soon as I can. She looks mean, but she is the sweetest dog. When you come to our house, she is very protective and stands at the door like it's her house, and she wants to know who you are before you enter. Once you're in, she's the happiest dog ever, turning in circles as if you are there to visit her. If you're eating, she'll put her cute mug in your lap, and she'll look up at you showing you the whites of her eyes. If you touch her, she won't leave. She'll stay there and expect you to pet her. She does not leave, even if we yell at her. She definitely runs our house. We love you Twinkie.

Tuesday, July 22, 2008

I've Been Robbed

I've been getting better by the day. I'm still really tired and exhausted, and I'm even eating a little bit here and there. I just ate an oreo cookie! That is a big accomplishment for me nowadays. Before that's just a snack, but today it was a meal.

I've been thinking about why this has all been happening to me. I get so many messages that I'm so strong, courageous, etc. but for some reason I do not see that. I try hard to be positive, but sometimes the negative takes over me. I think today has been a negative day. Why has this disease come in and taken over? I read an email from Petra that she would buy a t-shirt if I published one from my July 5th post. So I went back and read that post. And I feel like I have more to add to it. Have you ever been robbed before? Well, years back our car got broken into and I felt violated. Like someone had gone into our personal space without our permission. Right now I feel the same way. This disease has entered my home without my permission. I am robbed of my time, my energy, my life. I can't even work right now. Like I want to? JK. I do love my job, and the people I work for and with. I don't even know when I can go back, or if I can go back. I look at my dogs and just wish I could walk them, but I can barely get from my living room to my bedroom without getting totally exhausted. And my friends/family. I love to talk/hang out, etc and even that is draining on me. My sister Anna came over the other day and I was really excited. But by the end of her visit, I was lifeless. I got sick less than two minutes of her leaving. Going to the dr's today to do more lab work was a whole days work.

So what's my point. I don't really have one. I just feel like I've been robbed. I want my life back. I just want to be with my friends & family and have no worries. I feel like I'm trapped in this body that's deteriorating and my heart and soul wants to flourish.

Sunday, July 20, 2008

I've Been Too Tired To Post

Hi Everyone. I know people have been waiting for an update, but it has been a long and rigorous ride. I went to Dr. Gailani's office and had one week of treatment. Little did I know, that was the vacation. I guess the jokes on me. Coming home has been rough. Luckily for me, I've got a great support system and would not know what I would have done without it. Dr. Gailani has a great staff. Everyone there was so kind and nice, kinda like being at Disneyland. I did my treatments, and my dad and Sebastian were there with me all the time. As I remember, I'll write more about them, but right now it's a bit foggy. I was even lucky enough to have my cousin Chrissy (aka Louise) come and visit me on Saturday. I think the final day was Tuesday, but we actually came home on Wednesday, as to not have to deal with LA traffic. The ride home was perfect, but everything after that was bad. I could not (and I'm still having problems, even on Sunday) hold any food down. Not even liquids. Finally yesterday Lori & my dad took me to the ER to get an IV because it was so bad. And the dr was so cute, I kept thinking, is he married? But I couldn't bring up the nerve to ask him, I could barely tell him my problems. I wasn't thinking for me, of course not! I love my husband. But for my friend Lori. Lori, I forgot to tell you, that dr was cute, I should have been more bold and asked him for you. Next time. (I have his name on my pills you got for me, if you want to google him!!!).
I have not had time to read everyone's postings or emails, but will get to it as I get energy. This is as much as I can do today, but you can count on me. I'll be back before you know it!
~Linda

Thursday, July 10, 2008

I'm On Vacation

Yeah, right. Got ya looking though, didn't I? Last night Sebastian went and took his test, then right when we got home we left. Kinda felt like a vacation. My husband is the greatest husband there is. But when it comes to vacation, watch out. Something gets into him and he is just awful. The slightest thing will upset him. So of course last night after he got upset, I told him to just stay behind, we'll be fine without him. Then he's begging me to let him go, and instantly changes for the better. Ten seconds later the dogs got out of the house, and there he goes again :) I just love him.... We got out of there in one piece, and made it to Riverside early in the morning. I had to go get my blood work done, then we went to breakfast. After breakfast, I went to admit. I met a few nurses, Robin, and the finally Dr Gailani. He was very straight-forward. No sugar coating. I even learned a little bit from him. Previously I knew Interferon treatments helped the survival increase rate by 10%. But his explanation was it gave me a few months more before it would come back. ???? Why did I waste a few months doing Interferon when that's about all the time that it gave me? Anyway, I'll leave that question for another day.

I go back to the hospital in about 1/2 hour to be admitted. After that I'll have no cell and no computer. What a bummer. So you won't be hearing from me probably until after I get home -sometime next week. I'd love to write more about my appt w/Dr Gailani, but I don't have the time. Oh yeah, according to the charts in his office I have Stage IV, M1c. The worst type of melanoma. I didn't know that Stage IV had different levels, I've never seen that before.

Have a great weekend all, hopefully better than I will.

Saturday, July 5, 2008

July 5, 2008

One year. Exactly one year ago today I found out I had melanoma. What I knew about melanoma then and what I know now is mind boggling. How this disease has gone from a mole to affecting my whole body is unknown. I did not ask for this disease. I did not invite this disease into my home. It has unwillingly taken residence in my body. My body. And it does not stop. Why is it so damn aggressive? It could've stopped long ago. But it does not give up. And neither will I. I will fight this disease with every being in my body. I will do whatever it takes. I will fight more aggressively than the melanoma itself. I gave up on the Interferon. My body could not handle it. That will not happen again. I will prove myself, and I am stronger than this disease.

Tuesday, July 1, 2008

I'm Trying My Best

I'm trying my best to get back to everyone who has contacted me. It is rather difficult though. Please be patient. I have received many e-mails, and I read them all. Every single one. Sometimes they are so nice I read them over & over. But I do not have the time to answer everyone individually. I'm trying to do that little by little. I'm still working, and have my family to tend to, and of course my husband makes me rest & elevate my leg ~ a lot. I try to update here before I reply only because I know people are looking for updates, and I can reach a lot more people here than individually. And you all know that I when I'm with you, or write you, I give my undivided attention. So when I get to your message, please know I put my time, heart and energy into it. I can't tell you how important all of your messages are. They are so encouraging. I hear so many kind things ~ do you all have the right person? Did you get me mixed up with someone else? They touch my heart in so many ways. Sometimes I just sit in front of the computer and cry because they are all so beautiful.

So to answer a few questions I see repeatedly. I'll try to do it so everyone can understand, but sometimes I forget. Sometimes even I don't understand :) I have had 3 surgeries. The first was 8/13/07. Due to the amount of melanoma in the mole that was removed from my knee, they went in there and removed what tissue they could, and then removed 2 lymph nodes in my left groin to see if it spread. They found it had spread to my lymph nodes, so on 10/2/07 they removed the remaining lymph nodes (13) in my left groin. Of the 13, only 3 were positive for cancer, so they thought it was really good. I did treatment for about 2 mos, and life went back to normal. At my 4 mo. checkup, it was found that it had returned to my left groin area. Although the lymph nodes had all been removed, it's possible that a trace of cancer was still there. It used the scar tissue to regenerate itself. On 4/22/08 was surgery #3. The cancer was visible on my leg, and all of the skin was removed and the old scar was cut out. Dr. Kutner tried to get it all, but couldn't. Other thing I hear a lot ~ I don't look sick. Well, to be honest, I don't feel sick. The only time I feel sick is after surgery and when I did my treatment. Other than that life is normal. I guess that's what makes it hard sometimes for me to even accept this. How come I only feel sick when I'm trying to fight this disease? Believe me, I can do without the feeling sick part. Not the best days I've had. Last question ~ Yes, I'm still working. Part-time. My work has been very generous and I like to work because it's an outlet for me (just like writing here!). It gets my thoughts off of myself, and my situation.