Well, Tiffany’s parents just left, and it was good seeing them. I am now about to leave to go to a Children and poverty seminar that our church is hosting, and I am sure it will be educational, and something that I might not want to talk about but something that needs to be discussed…and how we can help this horrid problem here in our country and in the world. I am extreamly tired, and we have a full week ahead of us this week and next week is just as big….but more on that later. Right now, I will just let you read Sheila’s previous emails and give you something to comment about, heh…..
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Jay Updates in order withy a later personal update after them all…..
Wednesday Feb. 23rd, ‘05:
Jay is in the hospital for a 24 hours observation.
He started having severe pain in his shoulder (he has had some pain for a long time but never to this degree) last night. We told the Dr. in short stay today and he ordered MRIs. They think they have found something near the brachial plexus and are calling in a radiation oncology consult for tomorrow morning. The Dr. thinks the cancer maybe forming a tumor there. The neurologist came to see him this evening and feels the same way. They are going to try do the radiation tomorrow if it is warranted. He got platelets again today and some potassium.
The Dr. rounding today made me feel better about the low counts because he said that the methotrexate can seep out of the CNS and into the rest of system and effect the bone marrow especially with the amount he has been receiving. It’s good to know his counts are an effect of the chemo and not the cancer. Another Doctor told us it wouldn’t effect the counts but this one is the oldest Dr. in the practice and he was 100% sure that’s what it is.
Last night Jay woke up at about 2:00 AM and asked me what I wanted from Mystery Taco. He also told me that he is a spy and that his partner looks like Lucy Lu. He told me I’m a spy too but I don’t work in the same place as him. Today he reached out his hand to hand me something (of course there was nothing in his hand) and he told me, I want you to have this $20. There were a couple of other things he said that were hard to follow. He drifts in and out of this quasi sleep mode often.
He just said to me while laying in bed - hey, this is my commercial, and the TV is not on. He does love that Dr. Pepper commercial with the catchy jingle where the people in the back ground start whistling. When he gets grumpy I bring the commercial and it puts him in a good mood so at least he was hallucinating happy thoughts about Dr. Pepper.
There is no further word on the transplant yet.
Take care everyone.
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Thursday Feb. 24th, ‘05
Jay had is first radiation treatment today. All went well.
On the way home, while sitting at a red light in Wilkinsburg, we got rear ended. A lady hit one car that then hit another, that then hit another, that hit us.
Lucky for us, there was no damage but the guy behind us messed up his car and called the police so we had to wait for them to show up. When I got home we had about 4 inches of snow on the driveway (well at least it looked like 4 inches)
Jay didn’t do much hallucinating today.
No further word on the transplant.
Good night everyone,
Sheila
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DG’s Update on Jay:
Well, I talked to Sheila Saturday and Jay had a headache, but it was good Sheila told me, because she thought the reason his head hurt so bad was 1) there was a cold front moving through and Sheila had a head ache too (BTW: I think I had one too from when it came through here a few days ago) but Sheila seemed to think that Jay mainly had a head ache because he stayed up until 1:00 a.m. Friday night/Sat. morning playing games with his friends!!!!! I was so glad to hear that he felt good enough to do that, but I also know my brother is good at over doing it in the guise of……”I might as well live it up”! So needless to say we were all happy that he felt good enough to do that, and were sorry that his head hurt, but happy that he had a good time the night before. Sheila said that they are waiting now for the insurance company to approve the hone marrow transplant and then I will get the call, heh. She said that they would love to do the transplant right now, but if they did and the insurance did not approve it the way it is submitted from the Dr. the Sheila and ay are stuck with a VERY large hospital procedure! …..we all wait. Thank you all for your thoughts and prayers and please know Jay, Sheila, Mom, Dad, Aunt, brother, sister-in-laws, etc….all appreciate your love and prayers for Jay!!!!!!!!!!!!
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Tiffany’s big adventure continued…….
So after we called our family PA (not Dr. actually) and they told us they could not get Tiffany into the office until the afternoon of the next day…we decided to call on our the nurses from my church to ask what she thought and if we would need to go to the emergency room. After tiffany talked to her for a short time it was the nurses opinion that we head out to the ER. off we went….now I have been to the ER before (actually many times…being a Pastor) and I knew that we would need to bring a book…so I we both grabbed our books and drove straight there. Tiffany went in and I let her off at the door so she could go check-in and then I could park. When I go into the waiting room there was Tiffany with her sweet smile face hiding the horrible pain beneath that I know she had. I sat beside her holding her while I started watching all the people around us…..the room was filled primarily with babies and children that were sick or hurting, and it looked like they had been there for quite some time….several hours we found out later….well, after 3 hours of waiting Tiffany’s name was called and we went into a small prep room for questions and then they put us into another waiting room (a different room but packed with people this time) and we waited….then they called our name and we thought to our selves….finally here we go to see the Dr……..nope……they took us to the insurance person to make sure we could pay for what ever we were getting done….(I am very scared about what kind of bill we are going to get with this one) then back out the the second waiting room. Well, by this time I had to leave to go to the church to go to a meeting that we had…..now normally I would have skipped the meeting, but this was the first meeting that we had had since the resignation of the chair, and I was the chair…so I thought it would be short and sweet and then I could get out of there and back to Tiffany…..besides Tiffany had her cell and could get a hold of me anytime she needed too…..(I still felt bad, but I went) Well, the meeting lasted an hour and I ran back to the ER…to find out that Tiffany had gotten back to an ER room, but they had taken her to get a Ultrasound, and so I sat once again and waited this time by myself waiting for my wife….They wheeled her back in and by this time they had put a car accident person (not too bad) in a bed out in the hall (yes they were so swamped that people were in the hall being treated) well, they came back and the Dr. decided to do another exam this time making sure Tiffany did not have something wrong with a pregnancy (we had be AI ( Artificially Inseminated two weeks before) (They found out that she was not pregnant 
……..) But even after al that and another Dr. coming in to see her they decided that there was nothing to really do and discharged her only to tell her to come back the next day and make sure the blood work was OK.
Yeah that is right I said, “the next day”….. So the next day we both went back to the same ER….waited, and waited, and waited, and then we waited….up until the point that they finally had us wait some more! It was OK this time, because this time we got to see a lot more cool injuries, like a chief who cut his wrist from Maria’s (which we liked so much we went to eat there after this visit, heh heh) and all kinds of stuff, but the same basic stuff happened…and all the time we tried to tell them to find the same Dr. we had last night and tell her we were back and all we needed to do was do the urine sample and the blood test and be on our way (Tiffany’s pain that day had gone down from a 9 to a 3) but they would not listen and just told us that we had to wait again and again and again…. Well, they finally got her in a bed that was in the hall and asked her to pee in a cup and give it back to them. Tiffany was so worried about a blood sample, because her veins are so small that it is hard for anyone to be able to draw blood from her…. and luck her they decided to not make her have to do a blood test and the urine was just fine!!! So that was great news….even though we had to wait a total of 15 hours over the course of 2 days to find that info out…but the great thing was while we were waiting for the second day’s urine test there was this lady in one of the ER rooms that was streaming like a wild mountain lion! I mean you would not believe how this young lady was screaming….all the nurses and Dr.’s would look at each other and exchange bewildered stares and slight smiles….. I mean it was crazy how this lady was screaming! Then I noticed that one of the nurses said that she got out…..and we all knew that that meant this wild lady was on the loose….well out of no where a male nurse tackled this woman and three others grabbed her and as three people led her back to the room she was in one of the nurses grabbed her hair and the lady screaming, “Pull my hair harder, pull it!!!!”…..”OK”, I said to Tiffany…”Looks like someone needs to approve a sedative!”
We decided right then that going to the ER was way better than any movie date night, heh. (probably will cost a lot more, but still better) heh heh
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amazing news!!!!!!
I was reading one of my favorite magazines on Saturday and then I read a wonderful letter to the editor!!! As I was reading the letter I thought to myself…”Wow I think I have read this before”….and ten I read who wrote it….heh I could not believe it, but they published my article!!!! I have had my name in this magazine before with small quotes here and there, but this time it was smack dab in the front and my entire letter was there! bad grammer and all…heh….. So I thought I would let yall know about this and then show it off to your friends/family that you know that guy who wrote that letter, he, the magazine is in the book stands right now and thought I would let you support the magazine and buying it and framing it, he…so maybe not that crazy about it, but still fun……just in case if you don’t want to go find it on the news stands or Borders/Barnes and Nobles…then you can read it here:
DVD Etc. The issue is Jan/Feb 2005 Vol.4 #1 and the scripture on the spine is John 8:12….yep you heard me right scripture…the Editor is a Christian and is not ashamed to say it and tell his readers that all the time….the crazy thing is I found out that he actually started out in the magazine industry with my favorite magazine for the Turbo Grafx 16 Video Game system…. oh man I loved that system, and still love it today…If I could just fine one, heh….especially if it had the CD attachment and the greatest RPG game called” Y’s Book I and II”…the first home video game RPG on a CD with actually cartoon graphics on the disc! I even dreamed about this game with I was a kid, heh. Ok back on track my letter to the editor is on page 17, and my name is Grady Hollums) still amazing, and I talked about The Passion Of The Christ is anyone cares…. have a fun read…but you better hurry to read it I am sure the magazine will be taken off the shelves soon for the next month’s issue.
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“As Pepe swallowed he wished he could remember the universal sign for choking”
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See through toaster
and
a creative Idea of the new Xbox coming out this year!
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Ok Well I need to get some rest…so love yall, take care, and please leave your funny comments for the new picture……KUTPs!!!!!!!!!!!!!
Here is Sheila’s latest email for our newest Jay Update:
Feb. 22nd, ‘05:
Not much to update:
Jay got 2 units of blood and 1 unit of platelets yesterday and a lot of non-answers. We are still very unclear as to what is happening with the transplant. He was not himself yesterday but is much better today. Things are 10 X more difficult when Jay is experiencing personality changes. Things have been very stressful here so please be patient with the slower communication. As with life, other personal stressors don’t cease just because we’re in a big crisis and at this moment we’re experiencing an overflowing plate.
So, please be patient.
I will make sure that if we get any vital news I will get it out ASAP.
Thanks,
Sheila
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“Where O Death is thy sting?”
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The Strong Bad Rock Opera
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Tiffany’s Big Adventure
Well, Tiffany got back form her youth’s ski trip that she had been vomiting several times on a daily basis while she was away….and she was home for a grand total of maybe 15 mins that we tried to get her into the Dr. and they told her that the soonest they could get her in would be 4:00 p.m. the next day (when all signs were showing that she was having Appedicitius…..well…….
(breaking news…..Tiffany has just yelled at me to come to bed…so this story will have to wait until a later time….just for all of you Tiffany is fine right now, but last night and this entire afternoon and evening we have spent @ the ER….we had many adventures over the course of the total of 14 hours of our lives in the ER in Santa Fe…..more to come in a later date….)
To Be Continued……
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Please leave your comments for the picture in the comments section at the end of this post where it says “comments”….and with Sheila’s news please KUTPs!!!!!!!!!!!! Thank yall and God bless yall!
Here is Sheila’s latest from Sunday (today…well yesterday for right now)
Sun. Feb 20th, ‘05:
On Friday Jay had a lumbar puncture, a central line removed, a new central line put in and a bone marrow biopsy.
It was a busy day. He started feeling a lot of pain after the LP so they gave him the equivalent of 7mg of long acting morphine and that made the biopsy and central line not as bad. For some reason they were unable to get the aspirate on the biopsy and may have to do it again tomorrow. This is troubling because the aspirate is the part that is most necessary for the testing. They said it is possible that the lymphoma is filling the bone and cause it not to be there. Another Doctor said that we might just want to have a nurse who is really good at it do it again. The Doctor said it could just be his technique and not the lymphoma.
Tonight is my house cleaning night and I’m not quite done so I am going to go.
Please take care everyone.
Sincerely,
Sheila
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Since it is so late, and I need to wake up early to put together a Worship CD for the youth Praise band I will just leave you with this picture and ask all of you to give it a funny comment….(I wonder if I should start handing out prizes for the best one to see if more people will post a comment? hmmmm I will think about it.
“I say we go that way……..No, we go THAT WAY!
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Thanks as always for your thoughts ad prayers! God bless ya! and never stop KUTPs!!!!!!!!!!
Jay Update: (and it looks like some things got pushed forward a little now…..)
Feb. 16th, ‘05 evening:
Today started out with the usual. Try to get Jay awake, cover his central line with a plastic bag so that he can take a shower, tell him every 5 minutes for a ½ hour that he one has 5 more minutes and he has to get out of the shower, gather our clothes for the day, and then spend 40 minutes convincing him that he needs to stop watching TV and start the process of getting fully dress. Follow that up with 5-7 trips back up the stairs to retrieve items that we forgot but remember just before we’re leaving the driveway. His hat, pillow, and glasses rank as the top three most forgotten items (I’m not much of a morning person, I’m lucky I remember my head). 
We get to medical short stay and we wait in the waiting room for 15 minutes. After the fifteen minutes, we call the number on the sign that says “if you have waited more than 15 minutes, please call this number”. Every time the person on the other end of that number says “someone will be with you, why are you calling this number? Every time, I respond we’ll there’s a sign here that says to call this number after you have here fifteen minutes and we have been in here more than fifteen minutes.” Every time I’m met with the same awkward silence and the tone changes to a very inviting “we’ll be right out”.
By this point in the day, I feel like I’m in the movie Groundhog’s Day. Same old, same old.
I only shared this because this is the first time I realized what a routine this has become. Almost eerie.
Tuesday night, I was on my way back from work when my mom called to tell me Jay was running a fever. When I got home his fever was 101.4, later that night it was 102.4. At 10:30, I called his Doctor and he said to give him Levaquin and Tylenol and call back if anything changes. Nothing really changed. Even though he had a fever he said all in all he was feeling pretty good.
Today, at short stay they decided not to do his LP. We got to short stay at 10:00 and we didn’t see the Doctor until 4:30. When he arrived he gave us some new news.
They cancelled the LP for today but rescheduled it for Friday. They also are going to do a bone marrow biopsy on Friday. The Doctor said that it might be possible that the first round of chemo this time actually put him in remission. His low platelet count is a little disturbing but if the cancer is effecting the platelet then it should be seen in the bone marrow. If there is no evidence of cancer in the bone marrow we may jump straight to the transplant. This concerned me at first and I asked him “why would we risk skipping the chemo cycles since they were so important last time”. He said that since when he was treating Jay intrathecally with Deposite (this is the drug that cause the arachnoiditis) the cancer still came back, he is afraid that cancer is starting to become chemo resistant.
I also asked how can we rely on the biopsy when it came back negative on Dec 13th and 2 weeks later the cancer put him in ICU. He stated that he went back and examined the slides himself and stated that he found a marker that can be normal in some people but it may have been evidence of the cancer. He said if that marker is present (even though normally it is still considered a negative result) he will consider the cancer to still be present and Jay must be in remission (no sign of cancer) in order to proceed with the transplant.
He said he wants to do a bone marrow transplant but in the bone marrow abatement phase he wants hit him EXTREMELY hard. This time he wants to do full body radiation plus intensive intracranial radiation coupled with intense chemo. He said he strongly believes that this is our best shot. He said also that even after the transplant Jay will still have to have methotrexate in his CNS regularly. He said that since they found concrete evidence of the cancer (not just clinical evidence) in the CNS that he feels comfortable putting in an Omaya reservoir port in his head to keep him from having to have so many LPs.
Dr. Lister contacted Jay’s transplant coordinator already and she is working on getting insurance approval. We will know more about the schedule after the coordinator sets everything up and the biopsy is back. If cancer is found in the biopsy then he will have at least one more course of chemo.
It has been quite an emotional day. We are filled with hope on the main front but we also understand that this is the final battle. It is really scary for both of us. I took him out for dinner tonight and had my business meeting at the same time. This worked out well since Jay is not really able to talk much. When we got home he had himself so worked up I have him an ativan and helped him change into his soft PJs. He’s doing better now but the stress of today’s news is pretty intense for him.
On the way home, I notified his brother that they maybe moving forward sooner than expected and to get ready for the phone call any day since he is the bone marrow donor. DG is eagerly waiting. He is truly a great brother to Jay and a not so bad brother-in-law either (I would get more mushy but he’ll be reading this and I don’t want to inflate that ego any more that it is - Tiffany his wife would strangle me)
Well, I have some projects to work on so I have to go.
I hope all is well with each and everyone one of you.
Sheila
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The only other news I would like for everyone to consider is to stop by our church’s forum. It is a really great place for Christians and non-Christians alike to talk about the
bible, movies, music, books, etc…. It is just a cool place for community on the net…and I would love for every single one of you to register and join in the discussion…the link is below:
St. John’s Forum
@ the very top right is a link to register and please just fill that out and give your self a different name if you want….and join in the discussion. Thanks! and hope to see you al there.
Thank you all so much for your prayers and I can not tell you all how much I love and appreciate your prayers for Jay and Sheila……..KUTPs!!!!!!!!!!
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“………….”
Well, Valentines Day was a good day for us! We went to work and we both got a lot of work done and then Tiffany and I (after really loving on 
(Halo) to make sure he knew he was loved) drove to Albuquerque.
Tiffany and my first Valentine’s Day with each other (in college) consisted of me buying Chick-fil-A nuggets for both of us and then having fancy glasses (filled with strawberry flavored water) and candles on the floor of my dorm room, and then we rented her favorite movie Say Anything. So…….
Chick-fil-A has become a tradition in our marriage every Valentine’s Day, so I decided (along with Tiffany) to take a table cloth and candle sticks and go to Chick-fil-A in Albq. (the only one that is close to us) and eat @ the restaurant. So you can imagine that we walk in odered our nuggets and then go to your table clear it off, lay out a table cloth, and put up candle sticks (it was the ones that Christy and Kevin got us for Christmas)…we did not have time to buy candles or a lighter, so we put red hot sauce packets in the candle stick holders, and we enjoyed a very romantic Chick-fil-A dinner!!!!!! We then packed up all of our stuff and went to go watch Hitch!
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Well, Hitch is an awesome movie! First off it stars Kevin James and Will Smith. I love Will Smith in almost anything, and Kevin James famous for his King of Queens sitcom on CBS is so stinking funny. I almost hyperventilated! This movie was clean (maybe a few cuss words, but no nudity, and had lots of themes including, love, premature judgment, dancing, dating, dating, and dating, and man, is Will Smith good at what he does in the movie, heh. He is the ultimate smooth operator, heh. I have no doubt that everyone who goes to this movie will laugh…unless they are drugged or can not laugh due to some other reason. My advise….Go see it…then you might want to go see it again, and you can bet that we will buy the DVD when it comes out!
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Strong Bad is a chief in the latest Strong Bad email…so for all you cooking people out there like me you might enjoy this one, heh (or not, heh) Don’t forget about the Easter eggs at the end of the email. I love the one about “poopaw”.
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Sheila’s email for the latest Jay update:
Feb 14th, ‘05 Evening:
Happy Valentine’s Day.
Jay had another LP today with the methotrexate injection. He has an eye doctor appointment tomorrow in the morning.
Today is platelets took a nose dive and he needed an infusion. This is not good news because his platelets had stabilized for 2 weeks. He will most likely start systemic chemo Thursday but we are still watching it day. There is a possibility that he may have to go for an infusion tomorrow. Wednesday and Friday he has 2 more LPs but Thursday we should know when he will start the next cycle.
He did eat at Denny’s tonight. It was great. No one was there. This is very good news since today was Valentine’s Day. I would hate to think that guys think of Denny’s as the happening’ romantic hot spot. The methotrexate monster came out for a minute when the waiter put ice in his coke float. We got the situation addressed and all is well. Lucky for us we were looking for fast and not romantic. All he could talk about was getting cheese fries, Sunday I had to make an emergency stop at Krispy Kreme. If I didn’t know better I would think he was pregnant with such distinct and varied cravings.
I’m going to work in the afternoon tomorrow but can’t be go long my mom has to be somewhere in the evening.
Well, that’s all for now. We’re just keeping our eyes on the platelets.
Sheila
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ok here is the next picture for you to put a caption on. Please leave your responses in the comments. Thank you and have fun with this one, heh.
“What? I don’t make fun or YOUR ears!”
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Well, Off to work…yall have a wonderful week and day today! Take care and please KUTPs!!!!!!!!!!!!!!
Well, first of we made it back save from Las Cruces and everything went great! We had some amazing Mexican food (not this Southwestern food around Northern New Mexico) and I am excited about the Wesley Foundation camp called ROCK! It should be lots of fun and an amazing time for everyone involved!
Here is Sheila’s latest emails:
Fri Feb. 11th, ‘05 Evening:
This has been one of those weeks that if I were journaling I would just rip out the page and erase it from existence.
Murphy’s Law was in full swing (everything that can go wrong does).
I think here on the last day of the week, I am finally pulling some of this together and next week I see a glimmer of optimism.
I took Jay to the hospital today for his LP and while he was at the procedure I had to go to an urgent meeting at work. I left him a note telling where I had gone when I would be back and that I love him. I knew he would have wanted me to go to the meeting.
Well, I got lost on the way back from the meeting and forgot my cell phone had been turned off . I turned it on and found he had left 3 messages and now I’m running late.
By the time I got back, he refused to talk to me most of the way home and wouldn’t hold my hand. I was really being punished and I guess I deserved it. I have promised to never leave the hospital again when he is there.
I’ve been earning all kinds of new titles today - I’ll just add “bad wife” to the heap and start all over next week. In fact next week, starts tomorrow.
If I don’t get to write before Monday, Happy Valentine’s Day everyone.
——————–
and one more
Sat 12th, ‘05 Evening:
Well, the methotrexate stopped turning him into Mr. Hyde, I’m back to being the good wife. He said the methotrexate kept making him think I had abandoned him and that he couldn’t think rationally but he’s not mad at me this morning - I still don’t think I’ll ever leave
He wanted to eat at Boston Market today, unfortunately we stepped inside and he started to get sick. We rushed out and went home. He went to sleep and needless to say he didn’t feel like going out again. So, his adventure today was a 5 minute car ride but it was enough to upset his stomach. I spent the afternoon cleaning up, doing bills and watching Law and Order.
My brother and his fiancé are here now trying to get Jay to watch a car race. Jay is enjoying the company.
His schedule this week is - Monday - short stay, Tuesday eye appointment, Wednesday - Short stay, Thursday Hem Onc appointment and possible admission for chemo.
Happy Valentine’s Day.
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Speaking of Valentine’s Day……….
Tiffany got me three CD’s!!!!!!!!!!!!!! They are al amazing, but one new guy is really great!
Andrew Peterson Behold The Lamb of God (New Christmas CD)
Justin McRoberts Intersections
Koo Chung While We Wait
These are all amazing CD’s and Koo Chung is so stinking cool! heh
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Well, i saw this quiz on Thor’s website and I thought I would spread the Valentine’s Day love too, and you too can find out what kind of Chocolate you are!
Here is my results and a link for you to go to as well:
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Well, yall have a wonderful Sunday/week/St. Valentine’s Day and I hope you all are enjoying life! please be ever mindful of Jay, and Sheila and Tiffany’s Dad and those who are very much in need in your own life and never forget to KUTPs!!!!!!!!!!!!! God bless!
Ξ February 11th, 2005 | → 0 Comments | ∇ Jay |
Sheila’s email
Feb 10th, ‘05:
This week has been very busy. I went to work Tuesday and today. Things there are hectic and very busy.
Wednesday, Jay and I went to the hospital for him to have another LP with methotrexate. We will do this again tomorrow. Last night we got home from the hospital at 7:30 PM and we both laid down for a nap and didn’t wake up until 7:30 this morning. We really needed the sleep.
Jay is having a rough night tonight , he is feeling very weak and said that his back and arm seem numb. He seems very tired.
My infusion went well on Wednesday. The only side effects were fatigue, a very mild headache and a strange feeling in my muscles. All VERY minor things. I was very happy about it. Sure beats 1 day with the avonex -flu each week. I don’t have to have another infusion for 28 days.
Jay is still having trouble talking and the methrotrexate causes him to get easily agitated.
The home nurse is still coming by each day to draw blood.
He wanted waffles with blueberry syrup so I ran by the grocery store on my way home. He ate them then went to sleep.
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Well, Tiffany and I travel tomorrow, one stop in Albq…to do another AI, and then continuing down to Las Cruces, NM to listen to some talks given by the Wesley Foundation students and then back to Santa Fe Sat.
The weather looks like it might not be perfect, so as always I ask to please KUTPs!!!!!!!! Thanks!…and good night/day/weekend!
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