Monday, March 31, 2008

Site has been updated

I finally went and read all of the different relatives blogs that have visited mine and I think I have them all now listed to the right of this page If I missed anyone (and I know I have) please send me the link.

I've also added two new pictures of my totally hairless self...the 3rd round of chemo comes up on Wed April 2nd so I'll write more then.

love to all
Scott

Sunday, March 30, 2008

Just keep on keeping on...

Wow it's been a whole week since I last wrote...not much has happened. The shot portion of this session of Chemo has ended so the pain has finally (as of Friday) ended but I'm still feeling a little "yucky". The good thing is that the weather has been somewhat nice and a couple of times I've gone out and gotten a little fresh air by doing a couple of quick short errands and such.

I'm sorry it's been a week since I wrote. Clayton seems to be better at this than I am. I'm just going stir crazy...then when I do get on the computer and read emails or what ever I start to get tired and then things just stop.

I finally got my temporary disability check from work and paid some overdue bills which has now sent my credit rating down a few points. This became a highly discussed topic over the past week with Clayton and he was a little appalled at how I manage money...in a few words...I don't manage money...so for the first time in a relationship, I talked to my partner about how much I make and how I spend or don't and Scott's philosophy on paying bills. I think he wanted to commit me but instead we sat down and worked a little...I was very surprised at how I had fallen into the auto pay trap and seeing how that could screw everything up...I changed all of those accounts to either bill me or closed them.

It was an eye opening experience. I always marvelled at how he could manage on so little money since he gets a disability check once a month and lives on that and what he makes off of eBay. Yet here I was making a considerable amount more and always felt like I was struggling...he has once again amazed me with his help this week and I hope that I can keep it up with his help.

Clayton is Awesome and thanks to those of you who have taken the time to write him and read his blog. He lost a dear friend this week and had to attend the funeral. It was Buddhist and he said that he really enjoyed it. I have a young actor friend and his family who are Buddhist and they have invited me to come visit their temple when I'm feeling better. They have been very helpful to both Clayton and I during this particular time and I would like to see if the Buddhist way of life is a cause of that so I'm definately going to visit them when I'm better.

Other things...I think I'm coming down with a cold...I'm praying I don't, if I do, it could put off the next round of chemo and since I basically don't have an immune system because of the chemo a cold could be dangerous...it's cold in this house to...Clayton says it's warm but I can't seem to get warm and then all of the sudden I'll be dressed and bundled under the covers and burning hot....ugh...

so that's it for now... then next round of chemo starts on Wednesday and on that day they have to do a spinal tap and remove some of the spinal fluid and replace it with some chemo...yuck!

Thanks again to all that have been a great help to me and Clayton, for all of your well wishes, cards, food, etc...I can't thank you all enough.

Love and peace to all
Scott

Saturday, March 22, 2008

What a difference a day makes

Start time 10:00 am

Alright I know...it's been more than a week since I last wrote...but let me tell you this being sick stuff is a pain in the butt. There are days that I lay here in bed and say as soon as I get the energy, I will write an entry into my blog...then some times when I'm thinking about things I think I should put that in the blog...well so much for that! There is a list in my head and in the interest of getting them out of my head so I can move on to something else I'm going to spend the entire day today probably getting them into this blog.

So last week I was doing what I always do lay in bed, watch a little TV, and get ideas in my head about things I can do...Like I joined the Martha Stewart website. I love it. She has some great ideas. Then of course I watch Regis and Kelly just 'cause they are so funny! but what I have noticed is that all these showes give stuff away to the audience. There is also the VIEW which Clayton hates but I love watching those women go back and forth like hens in the henhouse (OK a little redneck of me but it's my blog so get over it.)

But then there is the Ellen show.

I just have to talk about this woman...she is amazing! A lot like OPRAH, who I like, she's generous in her own right and while quite famous for it, she grows her kingdom through this...while Ellen is just not only generous, and genuine. I get such a great feeling about her and for all that she is hysterically funny and doesn't seem to want anything more than to make people happy. She just gives away tons of stuff and she raises money for tons of different charities and just makes me want to help people...it got me to thinking about generosity and waxing philisophical about purpose. I seem to be still wanting to make a difference. There is so much out there that a person can doand how do you decide? I would love to be able to be like Ellen and give... give... give... but right now that's not possible. However, I think that I can still be generous to people and give them what ever I can to help.

So that led me down the thought path of things I could do so of course I will be helping when and where I can for the lymphoma society, for all the obvious reasons, I would like to help the poor children in our country only because I think that there is enough world charity going on, that I would like to help out those closer to home. The glee and happiness at this thought process put me in a great mood and I actually felt good and then I actually slept well.

Of course the next Day was a whole different story. Talk about bitchy!! Whiny....in my head of course since I don't want to put it all on Clayton...yet I still lashed out and said something to the effect of I hate my life...he was within earshot...not good...He lashed back with I'm sorry that I'm so hard on you...I didn't mean that he was included in that of course I just was feeling lowsy and in pain and so of course I had to apologize for that! Crap!!!!! Yea I'm tired of this stuff but it doesn't mean that I'm any less appreciative of everything he does!

So I'm still feeling like crap...and a side effect of the shots are that they can cause mouth sores and for 2 days I've had that on top of everything else...it hurts to eat...but I get through.

OK on to something nice...Thursday we were given comp tickets to see A New Brain in MD...we needed to get out of the house and do something before we killed each other; so this was perfect. I didn't feel much like it but I put on my mask and my cancer hat and went for it! The show was awsome and the actors and music was briliant. I can't tell you how much it lifted my spirits! I saw people I hadn't seen in a while and the show was about a man who has a stroke and may die and what goes on in his head with a giant singing frog and such. I love musicals and some of it hit close to home in the words and feeling of the songs I was totally elated at the end and I got to meet with the cast.

Right here I want to tell you about the Cast....Andy Izquierdo was the lead and he is one of the most brilliant musical theater actors, with a stunning vocal range, I've ever had the pleasure of knowing...I've never seen him in a straight play (that's one without music) but I have seen many performances of his and he is AWESOME!!! Lisa Anne Bailey once again gave an outstanding performance as his mother and I've yet to see a bad performance from her...she is one of my all time favorites! Ryan Khatcheressian played Roger and he was once again brilliant and always has perfect chemistry with Andy...two of my friends Dave Moretti and Susanna Todd (who I worked with in Cinderella) were just awsome and if you can and know her...check out Susanna's saucy new haircut!!! She looks positivly HOT! Speaking of hair and makeup one of my best buddies Kat Brais did make up and hair and I loved seeing her she is the nicest sweetest person and I just love her!

Not to leave anyone out...I do want to mention that Katie Pond, as the homeless lady was absolutuly wonderful and has a beautiful voice....Karissa Swanigan and Randall Jones were just cute and wonderful as the Nurse and Frog respectfully and Duane Monahan and Tim Adams rounded out the cast quite nicely with great acting and voices...all around I give it 2 very big thumbs up!!! I loved it...

I got an offer to see another show from some other friends. I originally told them that I probably couldn't since I would be on an IV bag of chemo...but I want to go and I've got to go if it's on a night that I'm not hooked to an IV bag...cause I need it...This house is making me nuts being closed up...I just sit/lay here uncomfortable and feeling like crap...it's spring Dammit and I'm feeling the burn!!! I'm sure Clayton is as well. He's been packing stuff up and putting tons of boxes into the storage unit for when we move. It gives him something to do while I'm in bed moaning from the pain. I know he can't wait to get out of this house as much as I can.

Speaking of moves that was the other thing we did...I donned the mask and went with our realtor to see a few houses. It was a very nice day and we saw some that we liked. However, we can't see any this weekend because of being low on white blood cells...but next week we can. it was so nice to get out...I see a theme here...but now I'm under orders to stay inside until my blood test on Monday....ugh.

So now for today, yet another 24 hours and I've felt like hell all day...my mom called and that was great I love it when people call...I got a couple of cards in the mail one of them from the office and it was loaded with signatures from everyone I work with...my best friend, her husband and baby, will come for a very short visit...I Started season two of Star Trek Voyager on DVD...Clayton got all 7 seasons for me for christmas and I'm slowly working through them...did I mention that I've already gone through all 3 seasons of the Wonder Woman TV show? So much for another day it's a little after 4 pm and it took me all day to write this since I've had to take so many breaks with the whole feeling bad thing...but there is always tomorrow and once again this strange catharsis of writing has cleared my head and made me feel better. It's 5:30 and my visitors just left and I'm done for this round....

Peace and love
OUT

Thursday, March 13, 2008

Round 2 Day 2

OY!!!! so today is Day 2 of round 2 of my Chemo...They sent me home with a bigger bag of the crap! They increased the dosage of the chemo since I handled the first round so well. I don't know about that, but I guess they think I did well they (the Doctors) obviously haven't been in my body for the past month...oh well.

Anyway I will be leaving soon for the hospital. A lovely actress friend of mine (who by the way is just glorious as an actress and person.) Is taking me up today...I'm a little tired and have a tendancy to nod off...It's taken me a while to write this....I'm currently watching a recording of Martha Stewart's show on TV... geez...now I have ideas for Easter and cooking and stuff loaded into my head and do I feel up to it? Yes and No...is Clayton going to laugh or say "I don't think so you should rest" Can I do it from the bed...lol...maybe with his help or will I just end up adding it to the list of things that I want to do...he's cooking lunch at the moment and boy does it smell good.

Well it's 3 1/2 hours later! I ate the wonderful lunch that Clayton made and totally satisfied this intense need for junkfood ... cheeseburgers...I ate two! Then my ride came...it's very nice to get out with someone who's a lot of fun...not that Clayton isin't enjoyable to be with...it's just the abiltiy to be out with someone that is a little wild and fun and we can joke back and forth and gossip...yes gossip; about theater and shows and stuff it's just a nice day! So anyway I'm now watching a recording of the View...for some reason I seem to love these woman go back and forth and discuss stuff. Clayton hates it but it's fun for me for some reason...I think I'm watching to much T.V. I was telling my friend today that I can watch T.V. now and not know what I watched unless it's one of my favorite shows and I've coined a "new" phrase...TV Coma...Definition: When you've watched so much TV that you literally phase out and not know what you watched...

Awwww by reading the above I see I've rambled...oh well that's me on a good day!
Later

Sunday, March 9, 2008

Review of the Bad Days to finally get today as a good day

Before I got sober I spent my life in negativity and since I got sober I've tried to stay on the side of good but I have to tell you that you're about to read some real negative stuff...because dammit I'm not perfect!


Since I last wrote I have had massive pain to go through the shots finally ended on Friday. Then Saturday I spent all day in bed with flu like symptoms and as that started to end, the pain started again last night...before last night I slept about 4-5 hours a night...let me tell you what that does to the mental aspect of Scott. It's a good thing that the universe is forgiving and understands that we aren't perfect because in the vile, angry, killer mood that I was in, I would have been struck down so hard that it would have taken half of Arlington with it.


Me and the universe had a very angry, one way, exchange of words and there isin't a sailor alive that could have beat me in the dirty mouth department.


Since Clayton and I have been together he has taught me that you don't have to yell and scream when you have a fight and to be totally honest we haven't really had a fight. But 2 nights ago as I looked at the clock and it was 2 am and I was wide awake, all I wanted to do was yell and scream throw things like a child having a tantrum. The ugly pity monster just wanted to rip, render and tear up anything within reach...so while I was yelling at God I just cried and let it out...


3 days ago when I woke up I looked in the mirror and one of the biggest aspects of my treatment was staring me right in the eyes...I looked like I had grown a leopard on my head overnight with the patches of hair missing. (see the pictures I've added to the site) And even tho' I was totally expecting it...it still brought tears to my eyes. So back and forth and back and forth...

Sometimes I don't know what to do. Yesterday I just laid in bed with these flu like symptoms didn't hardly eat anything nor did I want to or did I care if I did. I read couple of e-mails reading about other friends of mine who are having their own problems right now and I know I'm not alone in the anguish department...When I realized that I would need to send them some of the healing energy that I've been given, it helped change my attitude...sometimes it just takes a kick to the head.


So today roles around and I feel good...My best friend's husband came by and fixed my wireless access to the laptop so at least I don't have to wear a mask in the basement...for those of you who are behind...our basement leaks and Clayton and I both agree that there could be mold issues the my compromised immune system couldn't handle at the moment.

I'm in much better spirits today and I actually fixed my own breakfast and lunch which gives Clayton a little break...friends have called to check in and it's a different day. It will hopfully last like this until Wednesday when I have the new PIC line put in and start the bags of chemo again.

But for now I'm good and back to my old self...at least mentally.

Have a good one.
Scott

Wednesday, March 5, 2008

Wed, March 5, 2008 -- Stream of Consciousness Entry

Stream of Consciousness --Definition from Wikipedia-- "In literary criticism, stream of consciousness is a literary technique that seeks to portray an individual's point of view by giving the written equivalent of the character's thought processes, either in a loose interior monologue, or in connection to his or her sensory reactions to external occurrences. Stream-of-consciousness writing is strongly associated with the modernist movement. The introduction of the term to describe literature, transferred from psychology, is attributed to May Sinclair."


That's what today's entry is....


Pain is at the fore front of my issues the G-shots are a pain in the ass literally most of the pain in the back of my hips or in my chest (then arms, fingers, chin, etc)...yet when I went to the Dr. yesterday they said that I was doing well...they finally staged my particular form of Cancer it's Stage 1e this means that it hasn't spread to anywhere else as far as they can tell. However, I still have to have at least 3 more treatments so we are looking at another 10 weeks of this pain and tired...aww Sh** ,oh well...they tried to be real nice about it...they are very nice up there.

My 2 Dr's. Leonkis and O'Mahoney are the most nicest Doctors I have every met in my life...they have been incredibly sweet the whole time and really put up with my F***ed up panic attacks and whining when I call them and go "What about this?" and "What about that?" and some times the bright light big sound takes hold of my ADD and I have to call them back and go '''...What did you say about this or that?" What a baby!!!

I don't know how Clayton puts up with me sometimes. Do you know he works very hard to take care of me and I just hope he realizes how much it means to me...I don't know what I can do to ever give back to him like he does for me. I try to do little things like folding socks while I'm laying in bed (Whoo Hooo) or the dishes if I'm up to it...like the cleaning up of the water in the basement this morning!

Let's chat about that! I'm so damn tired of this house and it's problems...the basement flooded a little bit this morning AGAIN!!!! I just sort of stood there with the hose on the floor sucking up water and Clayton Caught me...told me I should be wearing my mask down there because of mold and that I should be resting and to go upstairs right now...He was right, but I feel so damn helpless sometimes...anyway because the computer is downstairs I promised that I would wear a mask down here today while I'm on the computer because of potential mold issues. He's very sweet to be like this I just feel like a major burden sometimes...

OK Scott let's change the line of thinking (this is how I talk to my self) Let's find the positive side of this comedy/tragedy farce! So the good news (above) about the fact that the disease hasn't spread is a great thing...How Lucky/Blessed am I? I've got to say that now this cuts down, hopefully, the amount of treatment time. This is the schedule now...have another chemo run and then do another CT scan of the area...see if the tumor has shrunk to a lot smaller, which I can tell you it has because my ribs aren't sore anymore and then 2 more rounds of chemo and then another CT scan....then they will make the decision as to whether or not I need to have any more treatment.


A friend of mine came over the other day and did some fantastic Energy work...it helped a lot and I can't tell you how much that this kind of of help and support means to me! I've got to be the most blessed guy around with all of this love...I know I keep saying it in every entry into this blog but so what! My Blog My Entries!! For many years I've held to the fact that this world was going to hell in a hand basket and that there was a hole in the bottom...but you know what? It's going to be people like all the people that I've surrounded my self with, that are going to save us....there is no way that pain, bad energy or anything else could beat all the love that is out there in the world.


OK so I'm all sorts of drugged up had to take Percoset the first thing this morning...and now I'm going to fix something to eat and go back to bed. Clayton was out doing some house cleaning for someone and is going to be back soon. I also talked to my boss today and checked in to let her know I got all my disability papers in so I keep some money coming in at least. So I think that for now that's all...I have another visit to the Dr on Friday for Blood work and will have more to report then.


Out for now!

S

Saturday, March 1, 2008

Saturday -- It's been a couple of good days...

So my Doctors tell me that feeling good physically will go up and down and they are right. The roller coaster of Being Tired and having, what I'm now referring to, pain waves.



Pain Waves -- Definition...."When sharp stabbing pains attack any where on my body. The heaviest about an hour after my GCS-F shots"



These waves come on like the Ocean Tides with about the same consistency.



As for being tired...I manage about 3 hours up in the morning before I feel that I just have to lay down....Then I just sort of lay there for a while until the next surge of energy...during that surge today I folded socks...lol...not a big deal for me...but for Clayton....



The next surge is now with me up at the computer doing this blog. I've been thinking about what I wanted to write about today and you know the thing that I want to talk about more than anything is the GENEROUS outpouring of love and support from my friends..



Lets start with the food...So many people have helped with food that I can't tell you how much it means to us...for different reasons....the biggest is that since I'm not working for awhile...my Jobs insurance for being out of work will drop to about 60 % of my current pay until I go back to work...That scares the hell out of me! So thanks to all for the food...you know who you are and you rock!!!!



The rides to NIH for Blood work and my Chemo Bag changes. Both times that I have accepted the offers for rides the two people who took me have just been fabulous!!!



With my friend and a former student ---...it was just two ol' queens on a road trip talkin' about everything....totally lovely!!!! With my long time Friend ---, I hadn't seen her in for ever and I sat back in her lovely comfortable car (she had separate heating and air that is to die for) and chatted and caught up! She lost her Husband a couple of years ago very suddenly and it was so nice to see how she had worked through it so far...she also reminded me of how her and I are alike in the ability to compartmentalize how we work through our life...and go about with the logic of day to day things...I can't tell you how much help and joy I was feeling when I got back from the hospital...I was in the best mood I've been in for a couple of weeks.



My mom calls everyday just to check in and this is one strong woman! DAILY I get email from her about different Holistic treatments to help supplement my current treatment and there is no negativity or anything...she has been the most solid rock in my life through coming out, alcaholism, other illnesses and continues to do so.



I've gotten (2) fruit baskets from the office along with emails daily.



Get well cards and even a gift certificate from someone for a Pizza from Dominoes from ---. A lady I worked with when I did Christmas Carol. Many other things as well but I want to spend a few lines on the two people who offered to get matched for blood and bone marrow if I needed it down the road.



The first offer came from my friend ---...her's was also the very first email out of my friends to reply...when she wrote a very sweet letter and told me that if I needed any blood from her to make sure I let her know I about fell over!! That is true unselfishness and giving and this friend is like that all the time...she knows who she is and I want to know how much love I have for her.



The other person is a former student who also wrote a very nice letter and made the same offer despite all the things she is going through she still made that offer! These are real people who make these offers...and they have surrounded me with love and energy beyond compare and I will NEVER forget this...I LOVE YOU ALL!!!



And too my best friend (after Clayton) your daily calls and love and visits with all that you have going means so much to me I can't tell you...You know you're my SweetPea!



OK all as you know I've left names out on purpose...so that as with the practice of AA, anonymity first above all...



and good night!