I wish I could tell you...

I wish I could tell you my lack of posting here the last few days has been due to something positive, but, no. I have been sick almost non-stop since my last posting. The worse day (night) was Monday into Tuesday; I feel better, but that's not saying much, unfortunately. I've been getting extra hydration and anti-nausea treatments and that does help; but the fatigue is pretty hardcore.

Despite this, I still have a positive outlook and feel good in my heart and soul. This will pass eventually and I will begin to feel human once again; just in time for my next chemo treatment (sigh).

Hopefully more to follow if I am feeling up to it.

Post Chemo Update

I'm not feeling too bad. I'm not really that tired and I am not nauseous. I can't figure this thing out; I thought I would feel worse this time around based on my experience last time but I don't feel too bad right now...

Saturday Morning Update

It's going to be very warm today. It's not even 8:30 and it's probably 70 degrees outside and getting warmer. They say it should reach 90 here and over 100 in the valley. I'm preparing now for the heat later... I have my ice made and the fans going; eventually I'll get the air conditioner on and start closing the blinds to keep the sun out. I'm glad that I'm not doing chemo today; I wouldn't be able to turn the air conditioner on and I'd end up just sweating...

I am feeling good today. I ran a whole bunch of errands yesterday, one of which took me over to the DMV in Hollywood. This DMV is right around the corner from where I used to work at Comcast (now Time Warner). It was strange to be there and walk around the area I spent so much of my time in. I had some good times there, and a lot of bad times too; but I tend (as I think a lot of us do) to romanticize the past and only remember the good times.

You'll probably see another update from me later on.

Interesting Dream I Just Woke Up From

Thought I'd share with you a very interesting dream I just had:

I had some sort of meeting with Pat Summit (Tennessee Women's Basketball coach; extremely successful and very southern). I'm not sure why we were meeting, maybe I was being recruited? She walks in the room and without introducing herself (I guess I was supposed to know who she is) says in a very southern drawl, "Well, Mr. Levinson, you've been given responsibility of a very unique type of cancer, and as you know, the likelihood of survival is around 10 percent." I interrupted her and said, "Coach, hold on just one second! Now, that is no way to introduce yourself to someone." (!) Then, somehow, I was giving a speech in front of a bunch of very well dressed people. JFK and Milton Berle were in the audience(?) (!). I started talking, but instead of sounding like me, I sounded like Jack Lemmon (?). I began talking about how grateful I am, but it was all completely insincere, and it sounded even more fake since I sounded like Jack Lemmon (picture the movie Glengarry Glen Ross and you'll get the idea).

Weird, huh?

Update: Random Thoughts

A bunch of mostly non-medical random thoughts:

I have been watching a lot of playoff hockey. If you've never seen hockey in the playoffs, you owe it to yourself to check it out, if you are a sports fan. It is amazingly intense and physical, and will suck you in if you give it a chance. Added bonus: hockey in HD is amazing.

A lot of the music I have been downloading lately comes from Paris France. Apparently the dance and electronic music scene in Paris is the best in the world... I love the stuff coming out from there; it's catchy and fun. I don't understand most of the words, but when the music is that good, it doesn't matter; rhythm is universal.

Still feeling tired, but less so. I have a busy day tomorrow; I gotta go to the DMV in the morning and run some errands after.

AM Update - Thursday 4-24-2008

Feeling pretty much the same, maybe a little less tired. I seem to be less tired in the morning and then as the day goes on the fatigue hits me and I end up sleeping a lot. I am going to see the doctor today and one of the things I am going to ask him is if I can take Provigil to counteract some of the fatigue I've been experiencing. I'll let you know what he says.

Although I try to be as positive as I can be, on occasion I still get waves of regret for the things I haven't done in my life. I feel it particularly when I get fatigued and end up sleeping what I consider to be an over-amount.

Tuesday AM Update

Feeling much better this morning. I have been so tired, even six and seven days out from the chemo, and I was a bit concerned. Today, or at least right now, I am feeling much more like myself.

Today is Earth Day. Our lovely city and the Wilshire Center improvement district has decided to close Wilshire Blvd. near my house to all vehicle traffic to hold a street fair. Today, apparently, is a 'car free' day here in Los Angeles... yeah, right! By closing down Wilshire, a major, major traffic artery, all day, they are re-routing traffic through the surrounding neighborhoods - mine included. Already, at not even 7am, I can see there is significantly more traffic around my house. And it should get worse as they day goes on. I can't even imagine how frustrated drivers will be when they realize Wilshire is closed... So in order to create the illusion of a car free day, my street and neighborhood will have to absorb a lot of Wilshire Blvd.'s traffic; we will get more cars, more polution, both air and noise, and angry drivers. This, my friends, is a load of crapacola : ) I wish someone had thought this through better; at least do it on a weekend!

Monday AM Update

First I'd like to thank Frannie for the water : ) You don't even know me, and already you're giving me gifts? I'm not worthy. Thank you : )

I had a pretty good weekend, although I was really tired. I got to see my father, my sister, and her fiance on Saturday, and Sunday, I got to see Mom, Dad, my brother and his fiance. I'm very lucky to have incredible family. This thing has changed us, has made us closer and appreciate each other more then ever. In that, it is a blessing.

Saturday Update

Feeling better today, almost human : ) My primary complaint is fatigue; I'm just tired and it seems like no matter how much I rest I am still tired. I ache a bit and for the moment eating doesn't really give me any pleasure, which, if you know me, is a big deal. I figure I've lost probably 60 percent of my taste sensation since I started chemo.

I just finished watching a soccer game between Wiggan and Tottham Hotspur from the English Premier League. It ended in a 1 all tie. Very good game; a lot of goal scoring chances but no one managed to actually put the ball in the net. There's another game coming on now which I am going to go watch.

AM Update 4-18-2008

Sort of a hard night. Slept fitfully, had a bit of nausea and ended up taking compazine which took care of the problem.

I'm getting tired of updating my health. I know you want to know, but it's like, ok, I am nauseous, blah blah blah. I'm over this already.

I heard this morning that Bruce Springsteen & The E-Street Band keyboardist Danny Federeci died of melanoma at age 58. I didn't even know he was sick. As you may know, I am a big Springsteen fan and Danny is an integral part of his music. It sort of feels like a part of my childhood is gone, because so much of my teenage and young adult life was influenced by Springsteen. I haven't really followed the band in a while; I prefer the older stuff to the new stuff. It is sad to think that the band will never really be complete again.

PM Update 4-17-2008

Although I am extremely tired, in general I feel good. After my bout of nausea and constipation last night, I have not experienced a lot of discomfort. I feel better then I did the first time around, except for the overwhelming fatigue, which hits me like a ton of bricks.

Assistance Needed

OK, so I had the same pattern tonight as I had the last time I had chemo - horrible constipation, followed immediately by nausea - but I had it a day early this time. Anyone out there with more experience then me with chemo, is this a normal pattern? Should I plan for this?

I am feeling much better now. The nausea didn't last nearly as long and I didn't puke nearly as hard as I did the last time, but the constipation was equally traumatic.

I need to sleep.

Thoughts About my Uncle Eddie

My uncle Eddie died of cancer in 2006. His cancer was different then mine. I have been thinking about him a lot lately, especially today. I spoke with my Aunt Vicki after seeing the doctor and finding out about the genetic mutation I carry. She is an amazing human being, not only because she really knows her stuff having been through chemotherapy and treatment with my uncle, but because she is so kind and so strong. When my uncle died I wrote her a letter basically telling her that I didn't have the words to express the sadness I felt, that I couldn't begin to imagine the pain of what she had to go through and it was pointless to even try. I felt inadequate because words and expressing myself through them is my strong suit. But there really were no words.

When I spoke to her the other day, I said, "I have words now. I didn't have them before but I have them now." God, this is so unfair. Not for me, but for her and for my family and for the other people who have to suffer while we go through this goddamn thing. I miss my uncle a lot. I hear his voice. I wish he was still here. I hope he is watching me and is taking care of me. I hope that he is proud of the way I am going through this, although I can never express the kind of strength he showed after he realized he was going to die. I hate that I have to go through this, and I hate that my family and friends have to watch, and I hate that the people I love have lost other people to this disease and have to watch me go through it, all the same kinds of stuff with all the same kinds of side effects, and know there is nothing really they can do, that they have to just depend on me to tell them how I feel and what the doctor says. And, at the same time, I am hopeful. I no longer believe I am going to die. I truely believe I will live and beat this goddamn thing. And I am grateful that I can appreciate life in a way I never did before. And grateful for the people in my life who love me.

Update - Post Treatment 4-16-2008

I went and had my hydration and anti-nausea treatment, and also saw the doctor. Apparently, he finds me 'genetically interesting' as some genetic testing he did came back and revealed I have a mutated gene which prevents me from absorbing one of the chemotherapy elements which he prescribed (5FU, if you want to look it up). What this means is that I have to be on a very low dose of 5FU and monitored carefully moving forward. He also expressed surprise I haven't been sicker then I am. My blood counts are very good from what he told me and he is enthusiastic. I feel good too. I am tired and achy, but not that nauseated. We'll see how it goes.

AM Pre Treatment Update 4-16-2008

Right now I feel OK. The biggest complaint I have is my extreme sensitivity to cold. I cannot even touch anything cold without it causing pain, which is a problem when removing food from my fridge. I get around this by using potholders as you would use them to remove something hot. Unfortunately, I also cannot eat or drink anything cold, so whatever comes out either has to be heated or let to sit until it gets to room temperature. Hopefully this annoying side effect will go away once a few days pass without me being on chemo.

Today I will go in and have a standard hydration - anti-nausea treatment, get my blood work done, see the doctor, and have my infusion pump removed, and then I am free for a few days.

Tuesday Update

I had an anti-nausea and hydration treatment at the doctor's today; this is standard procedure. I'm still wearing the infusion pump through tomorrow. I'll meet with the doctor tomorrow, do my blood counts, and get a treatment, and that should be that for this week and next (hopefully).

Right now I feel sick. I feel like I have the flu but with no symptoms. I am tired; my body aches; I get a bit nauseous; and I get hot and cold quickly. All of these are standard side effects that I expected. Hopefully this will become more routine as the cycles go on.

I promise I will try to write more at some point. I just don't feel well.

Second Update- Post Chemo

I appologize that I won't be able to do a comprehensive blog tonight. I am beginning to feel the effects of the chemo much stronger now; nausea, fatigue, etc. I am going to take a compazine and go to sleep. Hopefully I will feel better tomorrow.

Post Chemo Update, Monday 4/14

Had my second round of chemo today. An eight hour affair (ugh). No nausea to speak of right now, but definitely I am more sensitive to cold. I won't be drinking or touching anything colder then room temperature for the forseable future. This is a side effect I was told about, but didn't experience the first round.

I've had a chance to come home and eat and decompress. I am going to lay down for a while and then blog some more.

Comment

I posted this as a response to Gayle's response to me. I thought it should also be it's own entry.

Why I feel so strongly about people using their names when they post:

I guess why I feel so strongly about this is that to me, the whole "secret admirer" thing feels very much like high school. The thing is, unfortunately this is a very serious situation for me, a life and death kind of thing, and I don't have much of a sense of humor about it sometimes. I laugh and joke about it, but the bottom line is, this thing has affected my life in every possible way you can imagine. I am not the same person as when I started, and when I am through I will be different still. I put my heart and soul in this blog; because, although I appreciate you reading it, it's really for me - a way to get my thoughts and feelings out of my head and into the universe. So I take it seriously. I tell the truth, unpleasant as it may be. This is not a high school year book. So, part of that is telling me who you are when you write a comment, so if I want to comment on what you say, we can both be accountable for our words.

(Sigh) It's too nice a day to be sitting here, I'm going out.

Update and Statement

I had a good day today. I am still a bit tired but in general feeling very good.

I know I said I'd be posting a review of "Shine a Light." I'm still working on it. I promise I'll post it soon : )

Speaking of that, I've been thinking about starting a second blog dedicated to my thoughts about pop culture: music, movies, TV, sports, architecture, etc. What are your thoughts on that? Do you think a second, separate blog is warranted so this one can stay strictly on a medical message? Would you be interested in reading a pop culture blog written by me? Please let me know.

Lastly, and please forgive me if this comes off sounding shrill, I need to clarify the policy when it comes to anonymous postings to this site. Please, if you are going to post anonymously, include your name at the end of your post so I have some idea who you are. I let the "secret admirer" thing slide one time, but from now on, if you don't include your name, your post won't show up. I'll see it, of course; but it will get deleted. I am not interested in 'secret admirers' or people who don't put their names when they post. If you're interested in what I have to say, and want to comment on it, let me know who you are. That's all I ask. The temperature in Rio is 80 degrees. Please return your seats and tray tables to their upright and locked position; we are about to land.

Update - April 10th

I am feeling much better. Probably 95 percent of myself. All of the chemo symptoms for the most part have gone, with a mild exception of fatigue. Today, I had the bone infusion via IV at the doctor's office. Supposedly, there should be no side effects with that treatment, although I should expect some joint pain and some muscle pain... some people don't get that. So far, I feel pretty good.

One of the reasons I haven't posted in a while is when they put the port-a-cath in my right arm, they cut me up pretty good. That is well on its way to healing, but sometimes it hurts, as you would expect something to hurt where they cut you in order to implant something. Hopefully, as time goes by, that will hurt less and less.

Overall, I feel fantastic, mentally, physically, and spritually. I have hope for my future. I thank God for the day that I have, for the people around me. I hope this continues. Since I start my second round of chemo next Monday, this will be a good baseline to see just how the treatment affects me in terms of fatigue and other side effects. Ideally, I can begin to predict how my body will react and begin some sort of planning for the future.

Tuesday Update

I feel good... I knew that I would...

With apologies to James Brown, it was a good day. I got out of my house, went over to Century City mall and saw the Rolling Stones documentary "Shine a Light." I'll be posting a review up here in the next day or two. The point is, I felt good enough to go out, take the bus, and spend three plus hours out of my house with little pain or sickness. THAT GIVES ME HOPE. I am more hopeful today then I have been in TWO MONTHS of dealing with this thing. I thank God for the oportunity to feel good and to appreciate living life.

Feeling SO SO much better

I can't tell you how much better I feel today. I began to feel better yesterday, but I almost feel human today. Thank you very much for all of your support and concern.

I will begin treatment for the cancer in my bone on Thursday. This will be an IV delivered medication designed to strengthen my bones. It takes about 4 hours and is done monthly in the doctor's office.

The doctor said my blood count came back completely normal. He even said my cholesterol numbers were "amazing." I am very pleased overall and feel much better about how things are moving.

Feeling much better today

I am feeling much better today. Thank you to all who expressed their support and concern.

How I am feeling

Physically, I feel below average. I am still feeling nauseous and feeling like I need to crap every five minutes. I am tired, probably due to taking compazine and also general fatigue. It is hard for me to see the light at the end of the tunnel right now. I feel very discouraged. I can't project myself into a future where I will feel better. All I see is feeling sick. Intelectually, I know this is not so. I have to simply relax and take it easy. It is just hard with the reality of this in my face all the time. I can't see another reality right now. I hope this makes sense.

Saturday Update

I am feeling better, after a rough time. Last night I managed to puke and crap at the same time for about an hour (or so it seemed) but I eventually went to sleep and woke up pretty sick. I don't feel as nauseous right now, I just ate something so that's a good sign. I will probably end up living on compazine for a while, just until I get over this spot.

An awful experience

Tonight, I experienced perhaps the worst constipation I ever had. It took me over two hours to actually go and unfortunately as I was going, I also threw up. I am OK now, but that was one of the most awful experiences I've had.

PM Update

Not the greatest day in the world. I feel very anxious. I had to take a Xannax to calm down my head, which was running on overdrive. Mostly, I slept. Overall, I still am in some physical pain, and have nausea, as I have gotten previously. I am about to eat dinner and just try to relax as much as I can.

AM Update

I sleep really well these days. I wake up feeling very satisfied. I am also having some of the most realistic, vivid dreams I have ever had. Don't know what could be causing this, but I am not complaining.

I feel OK this morning. Still in some physical pain. A bit nauseous. Other then that, nothing. Very much par for the course.

A small request from me...

If you post anonymously, would you also include your name at the bottom of your post so I have some idea of whom is writing? (That doesn't really make sense since you're posting anonymously, but you get the idea.)

Mid Day, Post Chemo Update

I've been home from chemo for about two hours now. Had a chance to eat and to sleep. One of the things I notice is my appetite is back with a vengeance, almost as though I am on steroids again. Strange, because I am also feeling slightly nauseous. I've gone back to eating several small meals over the day, rather then three mid size ones, and that seems to work.

Right now other then the above I am having no side effects. They removed the infusion pump from my arm and took out the attachment from the port, which hurt as much as anything I've experienced lately...

Thanks for the feedback, those of you who sent it in. More to follow.

AM Update

I know I've been updating the blog a lot lately. Do you guys want this kind of extensive updates from me? You think it's too much? Let me know. Personally, I feel like I want to update a lot, just for myself, so I can keep track of how I am feeling, and put it outside myself to you, if that makes sense...

No nausea or any other major side effects this morning. I slept OK. I have a lot of pain from the tumor, however. I had to take a vycodyn last night. Still pretty tired. I gotta go in and have my infusion pump removed and a standard anti-nausea / hydration treatment, and then I'm done till Monday.

Late Night and Final Update - 4/2/2008

Still no major side effects, other then extreme fatigue and a bit of nausea.

Been sleeping all day. Am going back to sleep now for the night.

Mid Day Update

No chemo treatment today, just anti-nausea medication and hydration. I was done in less then two hours.

Tomorrow I go back to have the infusion pump removed and some additional tests. Monday I'll go and begin the direct hormonal treatment for the tumor. This is a medication in shot form self administered, similar to insulin (I forget the name of what it is). Then I am off until the following week.

I need to go to sleep, I am tired. More updates later.

AM Pre Chemo Update

Still feeling OK. Much more nauseous then last night, haven't thrown up yet but noticable. I'm about to eat breakfast. Should be interesting.

Mainly, I feel tired. It's like having a bad cold with only the tiredness symptom. If that's all there is, I should be home and dry : )

More to follow.

End of Day One Addendum

Still feeling OK, a little nauseous but nothing serious. Ate a full dinner. Drank a tepid diet soda with no ill effects. Also had a small cup of coffee, also no ill effects, although I feel the caffeine a bit stronger then usual.

If this continues, I might actually be home free. I don't even want to think it, but this could end up being OK.

End of Day One Update

I couldn't finish writing my blog entry at the doctor's. Due to privacy concerns, they wouldn't let me do it. Understandable.

I did chemo from 7:30 am to 5pm today. Tomorrow I do chemo from 7:30 to 11 and then Thursday from 10:30 to 2. Then I am off on Friday and come back Monday. I have an infusion pump attached to me for the next two days. It's about the size of an old cassette recorder, but much lighter. It goes through the port in my arm. I don't really feel anything, but it does make an annoying buzzing noise every minute or so.

My first day went well. Of course, I was scared. The people at the doctor's did everything to make me comfortable and went over everything. I did not get nauseous or get diaria. Apparently if I didn't get sick by now, I probably won't, which is a good thing. There are some side effects. One is, my body gets hot and cold, extremely hot and cold. I sweat a lot and then I shiver. This is normal and should go away. At one point my mouth got really hot, like when you eat a chili pepper. That didn't last long but was uncomfortable. I have to watch touching or drinking cold things as apparently a side effect is extreme sensititvity to cold, to the point where it can cause physical pain. I haven't reached that yet. I went grocery shopping afterwards and felt ok. I reached into the deli case and touched something cold, forgetting the side effect, and I didn't experience any problem. Let's hope that trend continues.

I am tired. I am hungry. I am PISSED OFF I have to go through this. On my way home, I cried. Maybe I shouldn't cry. This is so damn UNFAIR. UGH!!! I should be happy, I am not.

Blogging Live From Chemo

Thanks to technology, I am blogging live from my first chemo session.

I just began the actual treatment after several hours of pre treatment. I'll be here until at least 5 tonight...