Catching up after a month

A couple of things...I'm feeling much better and my health is improving. As most of you know I went home to visit my parents to work on recouperating a little bit and get a new family picture. That is where I've had a hard time giving an update to my blog and here's why. Blogs are supposed to be honest and tell people about how things affect them...that's what I did with the whole cancer trip. During which I learned a lot about my self and shared with you all. So in talking about my trip home which by the way was great...how do I explain about how great it was, without talking about my hurt feelings and the way it affects an entire family as well as myself without causing more pain.

Do I let it go? Yes...but I still have to mention it to get it out and by the time I get through writing it I'm have going to mention everyone who made the time I was there great and that will be a better memory.

So on with the show!!!!!

Mom and Dad met me at the airport in Salt Lake (on Saturday). We started for home and had a great conversation all the way home, stopped for food, (which became a running theme all week lol) finally got home and just chatted and relaxed. I did a lot of resting while I was there. Mom had a special bed delivered from a medical company so I would have a place to sleep since the house was a little crowded. My brother Zac was home with his girlfriend and My brother Damon is living there so those 2 bedrooms were taken and my sister and her 2 kids (Carson and Ashton) had the other bedroom so I got the one room with the big screen TV!!!! Whoo Hooooo! That definately gave me the advantage and I loved it.

Side story!!! While Home I thought I would be the good uncle and take Carson and Ashton along with my sister (their mom) Julie to go see the incredible Hulk movie...Holy Crap Batman!!!! Why didn't anyone tell me not to take two little kids to a movie...I thought it would totally hold their concentration...WRONG!!!!! When we got home my mom and dad looked me straight in the eye and asked how was it? I asked for valium, which had them rolling on the floor with laughter because they new why I wanted it and basically what had happened...the 2 boys then earned the name Crashton...more for that experience than the fact that I could never get their names out right the first time.

The next day was Fathers day and we went to my brother Kimball's house. His family is awesome, especially his wife Leslie who has the most beautiful yard and she works and she takes care of the kids and on top of all that made a Fathers day dinner for my Dad and invited me and mom and others (some who had other commitments) but she had a tremendous amount of food and it was a beautiful day. She is some hostess let me tell you!

Sitting in her beautiful yard that really should be in home and gardens gave me an idea! Since we couldn't get everyone together for a family picture on the same day, family is way to big and getting them together on the same day is nigh impossible. When mom and dad tried to find a place there wasn't even one where they could hold us all.

So anyway I thought what if we used Leslie's beautiful yard as the backdrop and took individual pitures of each of the families then I could composit them together over the backdrop using photoshop! Good idea because the families could all come over and against a easily removed backdrop take their picture so one by one we got them all except one (which is where I got my feelings hurt...but not to be discussed now) Once I get the composit together it will look great! I also got to see most of my family! I got to visit with my brother Eric and his wife Valecia who once again is just a lovely person. My sister Wendy just had a baby (mason) who has had some health problems but she brought him over with her husband who was just a very nice guy and took to taking care of that baby like a real dad!

Most of them made a tremendous effort to work with mom and I to get this done. Then other family members started showing up! My Aunt Dee came down from Logan Ut which is 3 hours a way to spend the afternoon with me and just to visit. She brought her grand son and they, mom and I went out for lunch. Then she drove back to Logan (by herself with the baby) but I thought it really was awsome that she would come down just to visit! Then 2 of my other aunts did the Same, Aunt Sharon came down and we went to a seafood restaraunt with mom and dad and had a great visit and then the next day Aunt Rhonda brought her beautiful teenage daughters down (another 3-4 hour trip) and we went and had sushi together! During this time my Aunt Kaye who lives down the road from my mom came to visit a couple of times. It really blew me away that family would come from so far to visit and short visits to! Too Short! Next time we will try and plan it better and I've also committed to come home once a year for a visit.

OK now back to other members of the family. My sister in-law Katy and my brother Dan had me over for dinner while we took the pictures and I got a real big surprise! My Brother Damon's ex-wife Cindy and children came and visited as well so we all had a great time catching up. I hadn't seen Cindy and the kids for a number of years and I got to get their picture as well so I can add it and it was great to be able to visit and catch up! Cindy hasn't aged a day but those kids sure have grown! They have jobs and drivers licenses and stuff that are all indicators of them reaching adult hood and I'm feeling just a tad old.

Katy's food was great and she was a great hostess even tho she said she wasn't...well phooey to that she was great. The one thing I did miss was not getting to meet her mom Susan. There was a reason why she didn't make it but I don't remember what it was. I kept trying to find time to even remember to at least meet her and failed miserably which I hope she can forgive me for.

I got together with 2 of my high school friends Alira and Joy...once again lunch and food where involved along with the visit...it was awesome to see them again it's been far to long.

I didn't get to see my brother Brian since there are some legal issues going on with him (no I will not go into detail about his life...that's his business) My sister Marchell and her new husband along with kids I missed because she was still honeymooning and working two jobs and was 5 hours away!!! But I did get to see here oldest daughter Laura Lee, her fiancee and my great neice for a visit once again totally lovely!!

In between all of this we did some clothes shopping because nothing I had fit for work when I got back on that Monday...Mom and I were always running errands which in a way helped me because I got some exercise in as well as getting all the cleansing herbs and stuff to help me get better and I am. I wish I could have seen the Arizona Side of the family but they are just to far away and I will have to make time later especially since my cousins on that side of the line I haven't seen in a while.

Ok I'm going to make this as easy as possible. I got to talk to my brother Denis but that's it and not the rest of his family. I'm letting it go and I thank him for taking the time that he could. I'm letting the rest of it go

That's it for now

Puberty???? Again!!!!

So...when you have chemo and radiation, all your hair on your head and body just sort of disappears...then one day you feel the top of your head and you feel some peach fuzz. Yea! my hair is growing back...but that's not all...it's growing everywhere else as well! I swear it's just like puberty! I got 10 types of excited the other day when the dark smudge on my upperlip that I tried to wash away didn't and I realized that it was peachfuzz!!! just like when I was in high school!! I am glad however, that the rest of the stuff that comes with puberty doesn't re-appear...lol.

So I have 2 radiation treatments left, today and tomorrow...then I'm DONE!!!! I have regular Doctor appointments and such but for the most part I'm DONE!!!! Woo Hoo!!!

Saturday I'm going to leave for UT to stay with my parents for a week and let my mom "Fuss" over me and help me get rid of some of the side affects of treatments. A lot of my family members are coming from different locations to see me which will be great! and I hope to come back feeling much better and in tune with my self. We are also going to be taking a family picture as well. It will also be the first father's day in quite a number of years that I will be home for. I'm already prepared with a fathers day gift to take with me.

You may have read in Clayton's blog that I did have some problem last week with my side where they were doing some of the radiation. But they took an x-ray and couldn't see anything and I think it's starting to go away so I think I just pulled a muscle. They said that things like that could happen during the treatment so for now I think it's OK.

F.A.C.T.S. is really picking up steam!! Thursday we review the first draft of the Non-Profit paperwork and I have already been talking with loads of people on what can be done for fund raisers, putting lists of people together, getting a website put together and even one person is helping me with a List Server for mass e-mailings. So look for things to be happening on this and YOU WILL BE GETTING EMAILS ASKING FOR HELP :-).

The Docs are letting me go back to work part time starting on the 23rd I won't be able to work more than 15-20 hours a week for the next couple of months but I can work from home for most of it and I have a summer intern that I've had for the past 2 years who is back to help so she will be helping me take up some of the slack.

That's about it for now...I'm going to start packing for my trip and my ride should be here in a little while to take me to my treatment (still can't drive by myself until Nov....arrrrggghhh)

Peace out!
Scott

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