Coming out of the Dark

Hey All!


There is a Chinese curse that says "may you live in interesting times" Well up until recently that's what it's been like. And in a lot of ways it will continue that way for a while. So here is the basic gist of what has happened and then I'm going to expand on thought processes simply because I have a lot in my head and I feel that now is the time to get it all out...I'm going to give you some advance warning....this particular blog needs to be written and it won't be pretty. But let me tell you why I'm doing all of this self revelation. Once again I've lived through something that could have killed me and this isn't the first time...But I get ahead of my self...

AND THAT WAS YESTERDAY AND NOW IT'S A NEW DAY. Yesterday I felt like my whole rational world was caving in.


today???


My brain goes on these tangents where no matter how hard I try to see the good in a day I can't. I swear it's because of the pills I'm on but I still have things that need to be answered. Like, why do I survive things that could have/should have probably killed me like Alcoholism, Cancer, Crohns, multiple nut allergies, multiple accidents that I walked away from and should have died and yet I'm still here...Would someone who has an ear to God tell me WHY??? Surely I've got something to do to add to the positive nature of the Universe, I can't just be kept here out of some sick need to see how much Scott can handle!!!

It's now 3 days later....boy am I having trouble writing this....

OK...so now it's Saturday...I've been through a week of radiation treatments. I really don't feel any worse for the wear, just tired and a little bitchy. So for the past couple of days I've tried to get out and get some sun. I'm limited to the time I can be out but the Radiation Oncology unit gave me some SPF25 to put on and I can now stay out a little longer. Nausea is my worst enemy and I hate that sometimes Clayton gets the brunt of my Anger, Pity, moodiness, what ever you want to call it.

So last night the theater company that I'm President of (Clayton is VP but is leaving the board soon) has a show that is up called "House of Blue Leaves" it's a comedy. I needed to laugh, so this time I pushed the envelope a little and had Clayton drop me off and told him to go ahead and go home and I would find a ride home. I needed this little push of Independence since I can't (am not supposed to be) alone because of the seizures. For those of you who don't know; about a month a go I surprised everyone by having a sudden seizure. I woke up in an ambulance trying to answer questions that I was supposed to know the answer for but couldn't remember. Clayton kept his cool but I could tell when he got to the emergency room it scared him to death. So they kept be for a couple of days...sent me home with these new drugs for seizure disorder (which add to the moodiness already involved) and 12 hours later I started throwing up and couldn't stop so I landed back in NIH for 4-5 days.

During this time the Doctors all agreed that it was time to take Scott off of Chemo and put him on radiation treatments. This would keep me from entering the hospital for multiple stays and since it seemed to have done it's job on the grand scale then maybe the pinpointed radiation would help my body heal better.

Anyway I managed to get through the show without incident saw some people I hadn't seen in a while and felt a little more independent. I felt so good in fact that I got up this morning and fixed breakfast for Clayton before he left for rehearsal. I also now don't feel like this weekend while he is at rehearsal is all about Scott being babysat...it's more like just getting to hang with my friends and that the possibility of a seizure has had it's ass slapped back into a corner. I actually started thinking of things to do and clearing out my head. WHICH by the way allowed me to come up with my PURPOSE!!!!!

I'm going to start a non-profit organization called F.A.C.T.S. It stands for Fight All Cancer Through Service. It has been rolling around in my brain for the past week. Clayton and I heard about this little girl in Alexandria (VA) who had to have a kidney removed due to Cancer. The father (who is in Single Father Status) had to quit his job to take care of her and they were having a fund raiser to help support them....This got me to thinking...all the funds raised for Cancer research is great BUT...they don't help out with things like, Rides to the hospital, Food buying or preparation, etc...up to more than a dozen things I could think of...so F.A.C.T.S. is falling into place in my head and starting this weekend I start to put it on paper.

If anyone knows a good pro bono lawyer who will help me with the 501 c 3 paperwork please send them my way and keep an eye out for emails coming your way asking for help. I'm going to want this to be more than a donation type organization...I want to create lists of real people who want to get involved like they did with me. Let's help go grocery shopping, let's take the caretaker and the patient out for dinner if they want or even cook for them...Let's offer to look in and walk the pets...This is more than just throwing money at a situation (even tho' we will need that) this is about coming together and being of service.

Man do I feel better today I really did come out of the Dark.

I love you all for being there and for listening.

S

Maybe I should just make a reservation.

This is gonna be short as i'm weak, tired and not in a great frame of mind. I read Clayton's blog and he asked how do I do it...well I'll tell you the truth...I cry when know one is around and then convice myself that this will be over eventually and that I just have to keep going and then I turn on the TV or put in a movie and wait for something to happen like Clayton coming to visit...(Which I live for) just having him here boosts my spirits like you wouldn't believe.

I try to meditate during one of my meditations it occurred to me that I don't really pray while I'm in the hospital. It could be all the drugs I don't know. But it does bother me that I don't remember to do it. I was having hallucinations earlier in the week and the Nurontin makes me a blank slate. Clayton also mentioned something about me not complaining....Believe me I'd like to but what good does it do....the staff here does the best they can with what they have to work with. I'm not going to add to their stress by bitching about things they have no control over.

Well I'm gonna end for now the nurse is going to bring me some nausea medicine (Adavan) they shoot it straight into my iv and I take a little nap.

Maybe more later.
Scott

IN THE HOSPITAL...OUT OF THE HOSPITAL...BACK IN...

So 6 days after I entered the hospital from my last entry I came home. I was home for 2 whole days and went right back in for another 4 days...yesterday I came back home...so let me elaborate.

After I got home (from the first 6 day stay) I went right to bed I had developed an infection called c-diff in my intestinal tract so they put me on an antibiotic and since I was no longer nutripenic it was OK to go home...

It's 2 days later (Sunday) and 3 a.m. I wake up screaming in pain and actually put up with it (with the help of about 6 percoset and a bunch of Ibuprofen) all day. The pain meds I took only just barely took the edge off. On at least three separate occassions Clayton said I should call the Doctor...ya, ya, ya,...blah...blah...blah...Then as I got to thinking about it since I had just had a 6 day stint and most of the problem had to do with my blood and some of the symptoms seemed like a blood clot I got a little nervous and thought that maybe he was right and I called NIH since it was sunday I didn't expect much....but NOOOOOOOOOO...they said "you better get here as soon as you can." Aww crap...so (after clayton was smart enough to pack me an overnight bag) we piled in the car and we're off.

They put me in a bed send for the Doctor and give me some dilautid, IV Push. Holy Crap Batman that stuff worked fast!!! I don't remember getting to the X-Ray department I sorta remember coming back because we had to stop in the hall way on the way back to my room, I threw up. Clayton said that the nurse was running for anything I could use before I lost it over the carpeting.

They admitted me and apparently clayton and the nurse did some good nurse bad nurse gag (no I don't remember it) but apperantly he was the bad nurse and I told the other nurse that he was a big teddy bear...lol...anyway...after he left and I started to get some sense back the pain started coming back....so I got some more dilautid...boo ya!!!! Out like a light and as I'm coming down from that batch once again I decide to hurl...this time I was ready but man did I have a hangover!!! Haven't had one in about 12 years since I stopped drinking and let me tell you what I was not pretty!!!

So I told the Dr's. No MAS!!!! Give me something else!!! So they decided that I should be visited by the Pain and Pallative Care department. Before that they gave me something called Toradal (IV Push) it was like a super Ibuprofen...it worked pretty well but I could only have it once every 12 hours. Then the P and P folks came and gave me something called Neurontin...not a bad drug...helped me sleep 10 hours but at the same time it took the pain away a little to. So on Wed I got my PICC line in and my next round of Chemo started and sent me home with my new drugs...and that brings me to the end of my story.

I'm feeling better now and went to the acupuncturist today and then on to NIH to visit the P&P
clinic where they wanted to do an acupunture treatment and told them I already had one for the day...I didn't think that they would be that on the ball! So we rescheduled for next week and then I got to visit with the support therapist which was actually quite nice to just blab on and on for an hour...and not once did he say "...and how does that make you feel?"

Maybe now I can keep up for a while and talk about some other things going on...for right now I'm just going to say...Good Night!

You're Never Gonna Believe This One

I'm currently in the hospital, and I'm not doing the typing. One of my students is typing for me because I am so tired and weak that I cannot do it for myself, and I am way behind.

So let's start with the new round of Chemo. It was on a Wednesday, April 2nd (you're gonna laugh at this . . . I'm being interviewed by the nurse while I am doing this . . . multi-tasking). They gave me the Chemo without a problem but they also had to give me a spinal tap of something called Mexceltrethate, which I had a reaction to. It caused something called Arachnoiditis- it is one of the linings of the spinal cord in the brain. It caused inflammation and massive headaches, and it has lasted for the past ten days. So they had to give me something else when they had to do another spinal tap Chemo injection. This is part of the routine, but apparently, rarely some people develop reactions like I did. I don't know what the name of the new drug is, but today is the first day that the pain in my head has been manageable.

On Monday, the 7th, I came into the hospital to have bloodwork done and they kept me. I was dehydrated. So I was here all day getting an IV fluid and they sent me home. Still had the headache, but they said it would go away. Now I don't want you to think that these doctors are bad. They aren't. They are actually quite awesome. But like all good doctors they gave me drugs to get rid of the headache. These drugs have a side effect- dehydration and constipation. So on Thursday when I came to pick up my shot supplies, they took one look at me and decided that I needed some more help. And, once again, I was in the day hospital. I forgot to go home with the shot stuff. In the meantime, during all of this, I have been incredibly sick and weak.

Clayton, bless his heart, tries to do the best he can. But I think he is a little frustrated. Actually I am pretty sure he is because I read his blogs, and I think this is getting to him as much as it is getting to me. And to be honest I am not sure how much more of this I can take. I hate not eating. I have lost 5 punds in a week. I have mouth sores from the medication and this morning I had a fever. Now this is where you're gonna laugh again, the same student who is typing this out agreed to take me up here to get my shot stuff and it was only supposed to take an hour (because I forgot it on Thursday when I left). The nurses, on the ball as usual, took one look at me and decided to take my vitals, some blood, and now I'm admitted for the next few days. Only me, right?

I have what's called Neutrapenia. I'm anemic and I have about 38 white blood cells. The cause of this is that they gradually increase the Chemo each time and this is to be expected for this time in the course of my treatment. The doctor on call was happy that I had come in when I did so we caught it early. I've sitll got a bit of a fever. I've got an IV in me. And they game me antibitotics. I'm tryhing to eat. It looks really good . . . baked salmon with carrots and green beans, but I'm slow to eat. And not because of the food. The food is actually quite good. But the sores in my mouth stop me from eating too fast.

I have to tell you between the sickness itself and everything else going on, I'm just not sure I want to finish this up. Clayton called me back after he had found out that I was going to go into the hospital. He said, "I think I forgot something." I asked, "What was that?" He said, "I love you." I was crying like a baby at that statement. I guess you can't go wrong with that kind of support. Even with my student sitting next to me showing support, it's really hard. I guess I'm supposed to take it one day at a time, but this one really threw me for a loop. Well, before I become a blubbering baby and somebody's fingers become really tired I'm going to sign off for now.

Love, peace, and light.

Scott

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

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

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