Ξ January 12th, 2005 | → 2 Comments | ∇ Jay |
Well, the last two nights I was there in Pittsburg Jay kept his laptop for movies and other stuff, so I did not get to blog…but today I am here waiting for my wife to pick me up here in Albquerque, and I am staying @ a Pastor friend’s house (Thank you sooo mcuh Rick!)
And I decided to let yall know that I made it back to NM just fine and it looks like Tiffany and I will be back in Santa Fe this afternoon maybe in time to allow me to go straight to the church’s Wed Community Night dinner. I was very sad to leave and I know that Jay was too, but tomorrow I have some marriage conseiling to do, then Friday a rehearsal, Sat the wedding, and then Sunday I preach…so needless to say I am going to be very busy over the next few days. (and I have not gotten to even play with my Christmas gifts yet, heh j/k)
Well, I will make this one short, but you have got to read the email that Sheila posted from yesterday, it is so funny….and with no fruther adeu (sp?):
===========================
Jan 11th evening:
Things are getting better slowly. His temperature is 100.6 today which is up from yesterday but much better thanthe 104 temp he has been running. We found out the hard way that he should not take Ambian (sleeping pill)anymore. Last night he woke up and was trying to set up his computer. Normallythis would be a good thing but at 3:00 AM it’s more of a problem. I began toquestion him as to why he was putting his computer together and he said that hehad to take care of the bugs and that he had to kill them. After somequestioning I found out that he was actually dreaming but seemed fullyconscious. He thought we were being invaded by aliens and he was hospitalizedwith a gun shot wound after being shot by an alien. He told me not to worry hisfriends were bringing his guns and he would take care of the aliens. He alsotold me that the aliens come in 2 sizes and one is small and enters though thetoilet. The nurse was in the room to hear of this and I most admit it wasrather funny but he doesn’t remember talking to me at all last night. He saidhe remembers dreaming of aliens but didn’t realize he was talking and setting uphis computer in his sleep. The fun didn’t end there…THE GREAT FLOOD OF 2005At 7:00 am he wanted to take a shower. They unhooked him from his IV’s so thathe could take a shower and I laid back down on my air mattress to get some moresleep since the alien invasion cut significantly into my sleep. Obviously, itcut into Jay’s sleep too because he fell asleep in the shower. The next thing Iknow 5 nurse bust through the door and start talking about how water is runningthrough the ceiling on the 6th floor and I turn over and my hand splashes in apuddle of water. THE ENTIRE ROOM WAS FLOODED. He covered the drain when hefell asleep. Lucky for me my air bed doubles as a floatation device. Heflooded the room once before but it very minor compared to this.The conclusion is NO MORE Ambian. He is still having some intermittentpersonality changes because of the steroids and intrathecal chemos. He changesbetween Jay and Mr. Hyde every so often but I told him today I can handle him.:-)The bad news is that they did find cancer cells in his spinal fluid this time sothe cancer was actually in his brain too. This could explain the personalitychanges too. He had it in his brain before but they never had a test showpositive. His dad got him a vaporizer that seems to be helping supply some moisture whilethe mucoitis is bad. His brother left today and Jay was very sad to see himleave. Thanks for all your thoughts and prayers. Sheila
Ξ January 9th, 2005 | → 0 Comments | ∇ Jay |
Well, I checked my email and Sheila sent an email update, but then she sent a file with all of Jay’s chemo stuff. So I thought you might like to see it all…and it is probably very deep for those of you who don’t know what is going on….don’t fret….that is very deep even for me…but needless to say Sheila and Jay fully understand it all, heh. Yeah, they are awesome!
Well, today Sheila and I drove back to their home so we could pickup Jay’s new Pocket PC’s sync cradle so that I could pimp out his Pocket PC, heh. So…when I take his Pocket PC to him tomorrow there will be two new games and a few other apps, heh. We also had to go pick-up Jay’s fav. Lobster Bisque! And Oh man, it is really good! I am still searching for the best bisque that I have ever eaten…..The Seafood restaurant @ Epcot in Disney World…oh man that is the best I have ever had…but this one was VERY close! Very good indeed!
Jay loved it…but could not eat too much of it because it is very creamy and causes him to cough. So we will try something else tomorrow…maybe Chinese fried rice? We shall see….
Well, Jay is feeling so much better…again. He is going to the bathroom by himself, and walking around the ward just for the heck of it, heh. He is great and man, I love visiting my brother! By far Jay is my brother, and best friend second only to Tiffany (my wife), and more importantly, Jay is my hero!
When I was in high school I would tell people that I had three heroes, and now I will add it to 4, Jesus, Albert Einstein, Weird Al Yankovic, and Jay Hollums, heh.
Well, I need to get my sleep so I can go to church….there is one right across the street from the front door of the hotel!!! heh. It is great!
Please KUTPs! Love yall! cya!
=========================================
Sheila’s Email:
Jan. 8th Afternoon:
THINGS ARE SO MUCH BETTER!!!!!!
Jay is definitely back to Jay. This morning he got up and wanted to go for a
walk around the ward and he spent the entire time griping at me about “mother
henning” him. If you employ the transitive complaint property to his condition
you will know that the amount health is greater than or equal the amount of
complaining. So he is doing GREAT! 
He actually played with his Pocket PC
and set up his computer on his hospital tray to watch DVDs. This is a major
improvement. He’s walking to the bathroom on his own and is doing great! I am
so happy with his improvement in the last 24 hours.
Actually, they found a blood clot in his groin from the central line they had
put in and his temperature is from a staph infection due to the blood clot. He
is feeling so much better even with a 104 degree fever. They are giving him a
blood thinner injection to help with the clot and at the same time giving him
platelets so he doesn’t bleed to death. He told me today he is convinced he is
going to beat this thing once and for all.
I have included a copy of his chemo regime. They may vary it slightly but this
is pretty much the idea. It is about twice as intense as his last very intense
chemo. They will do a bone marrow transplant when they have completed the chemo.
We have a lot to celebrate today.
Sincerely,
Sheila
====================================
Jay’s Chemo treatment:
CODE: Hyper-CVAD
CCO Formulary November 2002
A REGIMEN NAME Hyper-CVAD Chemotherapy
Cancer Non-Hodgkin’s Lymphoma (High Grade) Curative
Regimen
Category
Local: A regimen not widely used; used by fewer than four Regional
Cancer Centres
B DRUG REGIMEN
Course A
CYCLOPHOSPHAMIDE 300mg/m 2 IV over 3 hours Q12H x 6 doses
Days 1, 2, and 3
MESNA may be given as an uroprotectant at the same total dose as cyclphosphamide but
given by continuous infusion starting with cyclophosphamide and ending 5 hours after the last
dose. (Although Mesna is recommended in the cited reference (Kantarjian et al.), most RCC’s
usually do not administer Mesna with this dose of Cyclophosphamide.)
METHOTREXATE 12mg IT Day 2
DOXORUBICIN 40mg/ m 2 IV Day 4
(Some RCC’s has replaced Doxorubicin 40mg/ m 2 with Daunorubicin 60mg/ m 2 )
VINCRISTINE 2mg IV Days 4 and 11
DEXAMETHASONE 40mg/day IV or PO Days 1 to 4
Days 11-14
CYTARABINE 70mg IT Day 7
Course B
METHOTREXATE 1000mg/ m 2 IV over 24 hours Day 1
LEUCOVORIN 25mg/ m 2 IV 24 hours after the
completion of
Methotrexate infusion
Q6H X 6 doses
Sodium Bicarbonate 600mg PO (starting day
before Methotrexate)
TID X 4 Days
CYTARABINE 3gm/ m 2 IV over 2 hours Q12H X 4 doses
Days 2 and 3ഊCODE: Hyper-CVAD
CCO Formulary November 2002
C CYCLE FREQUENCY
A total of 8 cycles is administered (4 X A, 4 X B) with the goal to give treatment as rapidly
as possible.
D PREMEDICATION AND SUPPORTIVE MEASURES
ANTIEMETIC REGIMENS:
HESKETH LEVEL 5
· With high dose Methotrexate, give hydration with Sodium
Bicarbonate for 48 hours.
· Prophylactic use of Dexamethasone 0.1% or Pred Forte
Ophthalmic solution 1-2 drops q4h while awake for 7 days
(during high dose Cytarabine) to prevent conjunctivitis
· Antibiotic prophylaxis may be given (see reference)
E DOSE MODIFICATION
Doses should be modified according to the protocol by which the patient is being treated. The
following recommendations are in use at some centres:
Hematologic Toxicities
See Appendix 6 for general recommendations.
Renal Dysfunction
Creatinine Clearance
0.2-0.8mL/sec
<0.3ml/sec>3X ULN
>4X ULN
% usual dose
REDUCE Daunorubicin to 75% dose
REDUCE Vincristine to 50% dose, and
REDUCE Doxorubicin to 50% dose
REDUCE (Daunorubicin) to 50% dose
REDUCE Vincristine to 25% dose, and
REDUCE Doxorubicin to 25% dose
REDUCE Methotrexate to 75% dose
OMIT Methotrexate dose
OMIT (Daunorubicin) or Doxorubicin dose
(Suggested action)
Neurotoxicity
1. Mild motor neuropathy REDUCE Vincristine to 2/3 dose
2. Moderate motor neuropathy REDUCE Vincristine to 1/2 dose
3. Severe motor neuropathy STOP treatment with VincristineഊCODE: Hyper-CVAD
CCO Formulary November 2002
F ADVERSE EFFECTS
Refer to Cyclophosphamide, (Mesna), (Daunorubicin), Doxorubicin, Vincristine, Dexamethasone, Methotrexate, Cytarabine, and Leucovorin drug monograph for full details of
adverse effects.
Most Frequently Occurring Adverse Effects
· Myelosuppression
· Hyperuricemia
· Stomatitis
· Nausea and vomiting
· Neurotoxicity
· Stomatitis
· Vesicant
· Cardiotoxicity
· Hyperglycemia
· Gastric irritation
· Hemorrhagic cystitis
· Alopecia
· Insomnia
· Constipation
· Acute encephalopathy
· Pulmonary toxicity
· Pigmentation discorder
· Diarrhea
· Infertility
· Hepatotoxicity
· Fever
· Cerebellar toxicity
· Conjunctivitis
· Flu like syndrome
· Typhlitis and necrotising colitis
G INTERACTIONS
Refer to Cyclophosphamide, Daunorubicin, (Mesna), (Daunorubicin), Vincristine,
Dexamethasone, Methotrexate, Cytarabine, and Leucovorin drug monograph for full details.ഊCODE: Hyper-CVAD
CCO Formulary November 2002
H ADMINISTRATIVE INFORMATION AND SPECIAL PRECAUTIONS
Refer to Cyclophosphamide, Daunorubicin, (Mesna), (Daunorubicin), Vincristine,
Dexamethasone, Methotrexate, Cytarabine, and Leucovorin drug monograph for full details.
I CLINICAL MONITORING
· Clinical toxicity assessment (including cardiotoxicity, gastrointestinal, neurotoxicity,
cerebellar toxicity, sensory, local, cystitis and stomatitis).
· Routine blood glucose test.
· Baseline and regular cardiac examination for patients with cardiac risk factors (including
prior therapy with Doxorubicin or Daunorubicin, Epirubicin, Mitoxantrone, or other cardiotoxic
drug) and cumulative Daunorubicin doses > 600mg/m 2 or Doxorubicin doses > 450mg/m 2 .
· CBC before each cycle. Interim counts should be done in first cycle and repeated if dose
modifications necessary.
· Baseline and regular liver and renal function tests.
· Baseline and periodic pulmonary examination.
· Baseline and regular ophthalmic examination.ഊCODE: Hyper-CVAD
CCO Formulary November 2002
J ADMINISTRATION INFORMATION
Patient visit Should be administered in hospital
Approximate drug cost
(chemotherapy only)
$ 910.00 per Block A treatment cycle
$ 772.00 per Block B treatment cycle
Complexity Value
BLOCK A
Regimen
Pharmacy
Chemo Nursing
BLOCK B
Regimen
Pharmacy
Chemo Nursing
200 Per cycle (value normalized to 28 days)
68 Per cycle
132 Per cycle
97 Per cycle (value normalized to 28 days)
39 Per cycle
58 Per cycle
K KEY REFERENCE(S)
Kantarjian HM, O’Brien S. Smith TL, et al. Results of treatment with hyper-CVAD, a dose-intensive regimen, in adult acute lymphocytic leukemia. J Clin Oncol. 2000 Feb; 18(3): 547-61.
L OTHER NOTES
This regimen should only be given by hematologists trained in the care of high grade
lymphoma patients, and practicing in institutions with adequate acute care designed to support high grade lymphoma patients.
================================
Well there is all those drugs and I have no idea which ones are Chemo and others that are whatever…but all I know is that we can all continue to pray for all of them to work well, and then I can come in @ the end of the game and clean house with my stem cells, heh. KUTPs!!!!!!!!!!
Ξ January 7th, 2005 | → 0 Comments | ∇ Jay |
RUN!!!!!!!!!!!!!!!!!!! Run!!!!!!!!!!!!!!!!!
Jay is back!!!!!!!!!!!!!!! heh
Yes, the real Jay is back!!! Jay is talking to us all the time..unless he is sleeping, Jay walked around the cancer ward twice with the PT guy and a walker and only got a little off balance when he took a corner, heh. He has walked to the bath room by himself and only gets off balance when he turns around. I have seen Jay open all of his Christmas presents in his room tonight, and he even sent his wife and me to go get chicken Tikka Masala for him to eat. Jay has been Jay today….not a drugged out weird manipulative little boy who goes in and out of sanity, heh. Jay is back and man, I love seeing him with a right mind and a little control over his movements, heh.
It is amazing literally watching someone heal right before your eyes. I am sure that being in the medical profession is similar to being in the ministry…you deal with death and life each day. They happen to deal with this life and most of the time I deal with this and the eternal kind of life, but in the end, they just like I have experienced the last few days get to watch how amazing God’s creation of the human body is @ healing. Now, I will not get into all the ways that God heals (mental, physical, emotional, and the ultimate healing of death….to enter into REAL life) but I am so amazed at how well medical and Spiritual healing go together.
Today was the first time I did not feel bad with leaving to go to bed in the hotel room, or leave to go get Jay food, because I knew he was well on his way to get back to normal so we can focus of the cancer again.
They did determine that the reason his fever was so bad was because a blood clot was causing infection. The blood clot was caused by a PIC (a big IV in his groin), this sometimes happens due to scaring or something else, but they are pumping him full of platelets and then will give him blood thinner and hope that it does away with the clot. All the Dr.s seem hopeful and needless to say that makes us all hopeful for Jay’s immediate healing so they can start the next chemo round.
Jay was very happy about his Christmas gifts, and love al that he got. Sheila loved all of hers too, and they can’t wait to use their gift cards one to Best Buy, and the other to Sears (I will let you guess which one got which card, heh) Although I am sure Jay could use Sheila’s Sears card too…but that will never happen, ha ha ha.
Jay was joking with all of us, rolling his eyes to my bad jokes, and hugging and kissing Sheila every chance he could. I even made him choke on his fruit smoothie with a joke of mine, and I felt bad, but was even glad to see him smile as his choked, heh heh….that is weird, but it is so true, I am so glad to have my brother back…and I can not imagine what it is like for Sheila to have her husband back too, heh….And a son (even if his is one of two) to my parents!
It was so funny because two nights ago Jay fell asleep with X-Files going on and with the sleeping pill he took he woke up telling Sheila about the X-Files episode and explaining that he was in one, heh. So last night Jay went to sleep watching Food Network, ha ha ha. We were hoping that it would make him hungry when he woke up and if he felt like he was will Emeril, it probably would not be a bad thing…and who knows….maybe Jay could cook some good food for everyone when they come to visit him, heh.
Jay is doing sooooo much better....can you tell that I think that? heh. Well, this is going to be a night that I actually get some sleep I have a feeling….so……Good night…….
and remember never stop K(ing)UTPs!!!!!!!!!!!!
============================
Oh Man the Easter Eggs are fun in this one, heh. Have fun!
Well, Jay is wonderful and slowly getting better each day…. Today Jay started out with a fever (normal with his kind of Chemo) and it kept going up to each a high of around 104.5 Now that is a temp and we could not have that…so we packed ice around his body (something he just loved…let me tell you, heh heh sarcasism is fun to play with, heh) We got it down to around 102.5 and we are celebrated with allowing Jay to take a shower…which raised it again, but I think he was doing much better when I left tonight.
He got his Lumbar puncture today and got a new kind of Chemo that Jay had never had before so we are wondering how his body will respond to it. And only time will tell….
The best thing that happened today for me was He looked at me and said, “give me that” pointing at a table beside his bed. I got up and proceeded to ask him what he wanted, “the Cloroceptic (sp?) strips?”, “No”
(well actually more of a head shaking “no”, then I proceeded to ask him if he wanted a drink, wet rag for his forehead, Kleenex, etc (all the same answer from him)…. then finally after I asked him for every soothing think on the table I finally asked if he wanted his breathing exercise device, and thatt was what he wanted…..that right then told me that the fighting Jay was slowly coming back. He did not want the things that brought him comfort, but wanted the one thing on the table that would hurt him the most but probably help him in the long run….it was very good for me to see that……
Then when we all knew he was feeling better is when he asked for his new Dell X50V Pocket PC that he got for Christmas and actually watched a Star Trek episode and another movie he had on there too. You know that Jay is doing better when he plays with this tech, heh…….
Also, Sheila and I made a Bed Bath and Beyond run to see if we could get him a memory foam bed topper to make him more comfortable and Sheila then spoiled him with getting a pillow to match (I don’t think he minded too much!)…..It was amazing how much better his was with that NASA designed memory foam under him!!! He did not squirm once and stayed in one place and told us his back did not hurt at all…..so that is wonderful news, but we will see how he is doing after a few more days on the tech foam. heh
Well, Sheila has not sent her evening email yet, so mine will have to do for now.
Just in case any of you would care….. the CES (Consumer Electronic Show) started today…(maybe even yesterday) and you can read about some cool tech coming down the road on one of my fav places on the net for gadget news (it is actually a blog too)…..Gizmodo.com
Well, yall take care and God bless you all!!!!! Please KUTPs!!!! and know I am praying for all you too…so take that! And that! and a little bit of that! Can you deal with that?! heh….good day!
========================
Oh and I put a lot of Easter eggs in there so have fun with them…and I wonder if there is a ending for Fly Guy? it is kind of relaxing and entertaining too…. I hope yall can enjoy the fun! Take care and God bless ya!
Ξ January 6th, 2005 | → 0 Comments | ∇ Jay |
Well, I am in a hotel room, but my mind is with my brother who needs lots and lots of prayer and healing. Sheila’s email below can tell you everything about Jay so I won’t go too deep, but all I can say is it just kills me to see him in the state he is in. The ICU was worse and he is doing so much better, but this is the time that takes more patience and I think I am finding out how deep my patience recovery really is. It is not a patience of dealing with Jay, or my sleep, or just sitting around a hospital room all day long and only leaving to eat…But it is the patience for jaw’s body and mind to heal up. My brother the men’s (never tested, but a sure bet in my mind) is talking very slow and moving even slower. I know it has got to be frustrating for him and I can not imagine what it is like, and me being the typical guy I want to pull out my tool box and fix all the problems. I wish I could just pray it all away or wave a wand and have all this go away, but trust and hope are things that I have always had in Christ, and I have given my life to Christ so why is it so hard for me to give my brother’s life to Christ? heh. It may sound weird, but I think we are all creatures of selfishness and sometimes loving someone so much which seems to be selflessness can turn into a selfish love of others, heh.
Every now and then I get a wake up call that I can not control everything and everyone and once again I allow God to be in control (as if I ever had control to begin with, heh) and it is amazing how much someone can learn about themselves while experiencing life with other people. I guess that is what makes life fun, and frustrating, heh.
Well, I did all kinds of things today, but none of them really mattered too much, the most fun I had today was holding Jay back from the shower and running to Eckard (sp?) Drug store (7 blocks away) before they closed @ 9:00 pm tonight with Sheila to buy over $60 worth of mouth medicine, heh. It was worth it and we loved doing it. And Sheila and I both got our exercise in, heh…..
I miss Tiffany by amounts I can not express, but we are all making it and so is Jay….. the only thing he needs other than a cure for cancer (we are working on that one) is for him to feel better so he can get his fight back. He is just so tired and run down that he is not being the usual Jay the cancer killer attitude, but how can he when he is spitting up phlem and feeling sick all the time? But I try to keep the attitude in the room up beat and fun. It is not hard and I love seeing Jay’s smile (even if it is most of the time sarcastic, heh) I’ll take anything from him, heh.
Well, I really do need to go to bed, and I think I will, so yall have a wonderful night and God bless yall! Thank you for your reading this and concern and please KUTPs!!!!!!
========================
Sheila’s email:
Jan. 5th Evening:
Sorry, it has been a few days since I have written but I have been very busy
taking care of Jay. He has been very heavily sedated and needs constant care.
He is in a standard room on the HEM/ONC ward. His room number is 718 and is
phone number is 412-578-1084. Please hold off on calling for a while because he
is unable to talk more than a whisper because of the irritation from the
ventilator and feeding tube as well as the mucositis he got from the chemo. His
oncologist is going to start him on a protocol called HYPER-CVAD that they are
using at Author Anderson for Burkitts after that he will have another Bone
Marrow transplant but this time from his brother.
He hasn’t slept much in the past 2 nights and I think that I’ve had about 5
hours of solid sleep in the past 72 hours. The night before he was up all night
very groggy and was coming out of the anesthesia and fighting me on being
restrained to the bed we spent all night compromising until I felt confident he
was really Jay and not Mr. Hyde.
Yesterday, he returned to my sweet and lovable Jay but the gave him a sleeping
pill at night and he fell out of the bed and ripped out his PICC line and bled
everywhere. Later that night they had to start an IV and his vein blew and his
hand filled up to twice its size with fluids. This morning he got another PICC
line and yesterday they took out his catheter and his groin central line and he
was very happy about that.
He is set to have a Lumber puncture tomorrow in which they also inject a very
long acting chemo drug. His lungs have cleared up but his air passages are
sore. His kidneys are back to functioning fine.
He is feeling absolutely miserable but the Doctors are actually pleased with his
progress. He told me he can’t understand how they can be so happy when he feels
so bad. They then tried to explain how he had been the past 7 days. He still
doesn’t quite understand how it all fits together.
One of his oncologists just came up for a social visit today to tell him hello.
The Doctor’s here are really amazing.
Well, here’s to a good night sleep for Jay. He sure needs it. Dr. Lister told
him that it maybe several more days until his sleeping pattern straightens out
because he said being in the ICU cause all kinds of disruptions and it takes
usually a week or more to work out. I’m thankful for my work that got me and
Jay’s family hotel rooms nearby so that I was able to get sleep this afternoon.
I’m not longer delirious and able to keep an eye on him tonight (well Jay may
disagree about the delirious part ).
Thanks again for all of your well wishes. We’re making progress!
Thanks,
Sheila
==============
Yall have a wonderful day and remember to let God take off the burden, sometimes you just can’t handle it all. 
God bless yall and KUTPs!!!!!!!!!!!
Well, today started off a little crazy trying to get Tiffany to the airport. We started about 30 mins late and then my father missed the exit to go to the airport and it made us even later…long story that really made me mad….but everything was just fine and Tiffany got on her airplane just fine and got all the way to Fort Worth/Dallas and found out that every flight from Dallas to Lubbock (Her final destination) had been cancelled for the last two days due to weather. 
So…… the funny thing is Tiffany was going to fly out on Friday to go see friends right there in Dallas anyway so she just called her friend and asked if she could stay that a couple of nights sooner…so all is well and Tiffany might save us some money out of this whole thing..and if she plays her cards right maybe even a free fight voucher later on…here to to hoping, heh.
Well, we drove straight to the hospital this morning after dropping off Tiffany……I walked into the room and Jay’s hand restraints were off!!!!!!!!!!!!!!!!!
Oh man, I knew that was a good sign and sure enough Sheila around 2:00 am this morning felt that he was enough in his right mind to take them off…so we walked in around 9:15 and Jay was sound asleep in his bed and I think we woke up Sheila too (She said she had a long night with Jay being sick all the time…but that he was coming out of his “state” and becoming good old Jay…just a lot slower and talking very raspy and soft (you would too with that freaken breathing tube in your throat for 7 days, heh)…….
Well, today was a great day because a wonderful person (who I am not sure if I am allowed to say who they are) bought us hotel rooms to stay in that is really close to the hotel, and is saving us all the trouble of driving back and forth from Jay’s home in Greensburg…. We can not tell you think you enough….ever! If I could I would buy you a wonderful gift of thanks and appreciation…but needless to say on a Pastor’s salary the best you can get from me is lots of prayer…which at least in my book might even come out better in the long run, heh…..
So tonight will probably be my last night @ Jay’s house and therefore unless the hotel has a computer then the blog posting will be scarce…but I am almost positive that Sheila has her computer hooked up via (dial-up gasp!!!!) in the hospital room, so maybe I can do a few updates there…and maybe is she feels like it she can send out her email updates again too.
Back to Jay though, He is so much better they have taken out every tube going into his body except they put the port in his right arm, but that is normal when he is doing all the chemo stuff and even though they had been having problems with getting it in there they got it in and he is now good to go for the chemo stuff.
he is still slow and slured in his speech, but his mind is back and you would find him laying down and every-now-and-then he would wink at Sheila and blow her a kiss…. (Like I said the good old Jay is back in town) he recognized me and we helped him remember a few of the things he said and did while drugged, and he smiled at them…but he is just so stinking tired and a little sick but a trooper (more like a Storm Trooper, heh) He had been throwing up water even, but today they gave him some kind of drug that cut down on the vomiting and he ate jello and I think it was ice cream, and then took some pills and kept it all down!!! Very good news!!!!
he was so nice to everyone even despite the pain of his new port, mouth, and throat. He turned on his own TV and sat up and even went to the bathroom by himself!!!! I feat that I was blessed to be present for..the nurse even gave him a high five for that one, heh. It is obvious that he is still scared and worried about all of this, but it is not like he has not gone through it all before….and this time he knows what is coming and is ready for it….I told him today that if I ever had any heroes above him that they have been shattered by this event! (and I meant it!) He is doing so amazingly well, that it really is starting to just be the time that he starts focusing on the cancer now and not the lungs or kidneys. He told me that he loved me and he just wanted me to know that no matter what happens, and the lovable, furry (well until the second round of chemo takes it all away), old Jay is back…….
Now comes the fun part of the chemo again and the prep work of getting my bone marrow/stem cells ready to be injected into Jay’s bone marrow. We have found out a long time ago that I am a very good donor match, so that is very good news, and originally they told us that the extraction of my stem cells would be a while off, but now they are saying that they might be able to harvest them now and freeze them for when they need them…..maybe I love cooking too much, but I want them to be fresh and at the most kick @$$ best they can be and if freezing them will negatively effect them at all then I don’t mind at all flying back up here and allowing them to harvest them from me. (especially since it has not been that long since I got over this Christmas sickness the entire Panhandle of Texas caught this Christmas, heh.
Please keep up your prayers though it is easy to get caught up in all the good news, and forget that Jay still has cancer and he is still running a small fever, and coughing up bile/mucus everytime you turn around. he is doing lots of sleeping (which is good) but he also needs to rest up because they are planning on giving him chemo tomorrow in his spinal fluid, because they said if it is as wide spread in his lungs like it just was that it is probably back in his nervous system as well again.
Soooooo…….please KUTPs!!!!!!!!!!
============================
Also, Nanaw our grandmother has been moved to the nursing Home where they hope she can regain her strength for a few days (max of 10) from her Panomia sp? I got nothing on that spelling) and hopefully she can get home soon to rest and get better @ home instead of a nursing home…that place is not the best of places believe you me!
===========================
other than that please pray for me to get rest every chance I can get it and that all this eating out food does not cause my heart to explode, heh…..I love eating out don’t get me wrong but I am big enough as it is much less getting fatter by the hour, heh.
Thank you all for everything and God bless you all…..you have no idea how much I love and appreciate you all, and of course Jay and Sheila feel the exact same way! Love yall and please KUTPs!!!!!!
============================
OH P.S.
I still would not call the room to try to talk to Jay his voice is so bad that it would be impossible for him to talk back (and he would want to would try too, heh) and it would not help the healing…but you can call the room and most of the time you will get one of us staying there with him. Thanks!
Ξ January 4th, 2005 | → 3 Comments | ∇ Jay |
Sorry, but I forgot Jay’s room number is 718 and the phone number to his room directly is:
(412) 578-1084
I would call the room yet, until Jay is thinking better, because all of Sheila’s time is spent trying to get him to do what everyone needs him to do. Thank you all for your thoughts and prayers and we are leaving now to go take Tiffany to the airport! God bless yall and have a wonderful day! KUTPs!!!!!!!!!!!!
Ξ January 4th, 2005 | → 0 Comments | ∇ Jay |
(Welcome to all of you who are from Sheila’s email chain…you can check back here anytime for updates while Sheila is at the hospital and not being able to send out email updates. So put this blog on the fav bookmarks, heh.)
Well, great news tonight! Jay is out of ICU and now into the Cancer Ward. This is really good news, if and only if they moved him because he could handle it. Basically, when we got there this morning Jay was his usual self fussy and very squirmy in his bed…and they were continuing to keep him drugged because he was hurting himself by moving around so much and causing his urine catheter to have some blood in his urine, and so they would just keep giving him drugs in the endless cycle because it was the drugs that was causing him to be mad and upset, but he would have to have them to keep him from hurting himself…but the good news is we went to go eat dinner between the 6:00 (end of the second visiting time) and 9:00 pm (start of the last visiting time and the nurse came into the waiting room and told us that Jay was in T7 now (the Cancer ward section of the hospital!!!) Tiffany, Sheila and I jumped for glee (Momma and Daddy had already left to go back to Jay’s house) and we ran to his room. Now we ran partly because we were happy he was there, but also to make sure he was not yelling and causing the new nurses in T7 lots of problems.
Well, he was doing just fine, and when we showed up his O2 nose tube was off and his feeding tube was gone out of his nose! (We found out later that he removed it when they transferred him from his ICU bed to his T7 bed, heh….and t& nurse told his his lungs did not sound bad and he was sure confused (ha ha) but then we told her how much better he was doing and that we were just trying to get the drugs out of him to he could start to think straight. The nurse was worried about the feeding tube being out, but Sheila and the nurse decided that they would just leave it out for now. also, other than coughing up green bile (which he was doing anyway with a feeding tube) Jay was his usual drugged self, except he was starting to become a little more normal. For example, he kissed Sheila 2 times!!!!!!! He would answer us when we asked him questions but on top of all of that he still was trying to make a deal with Sheila to let him loose from the straps that were holding him down, he would say, “Our marriage is based on trust so just untie my hands and trust me”, ha ha or something like, “Lets make a deal….give me a little more length on my hands” heh heh, He was still very worried about his hands being tied down (as anyone would who did not know what was going on) but all in all he was making better informed decisions. I even tried to leave and all I did was pick up my back pack and he forcefully asked me why I was leaving! heh. So he is starting to understand what was going on around him and every now and then he would have glimpses of his right mind and say, “You just can’t understand it is like a really long bad dream” So, needless to say…we are going to bed happy tonight, but Sheila stayed behind to sleep in his room with him and take care of him, while Tiffany and I drove their car back here to their house!!! Man there are some scary parts of Pittsburgh that we never wanted to see, and we only got lost twice so we considered that a good night! heh.
So Jay is still very much in need of our prayers to finally come out of the drugged state that he is in but much better. Please pray for him to get out of it and get healthy so we can focus on his cancer now, please pray for Sheila because she is not going to be driving home each night and will be staying up there with him taking care of him wit the nurses, so she will probably not get as much sleep, but will love being able to be with him at all times, and lastly please be praying for Tiffany because she is flying out tomorrow morning from the PIT airport and we (my father, mother, and me) have to get her there in time for her flight and fight Pittsburgh morning traffic! (and of course please pray for her safety going home).
Now I have to go to bed tonight so I can wake up and drive her to the airport. Love you all and God bless you all!
Love yall and please KUTPs!!!!!!!!!!!!!!!!
=====================
Here is Sheila’s email from this morning and my blog will be her new emails until she can write them herself.
Jan. 3rd Morning:
I called this morning and the nurse said that he made it through the night
without them having to place him back on the ventilator. He is still VERY
restless and pulling at his restraints.
I’ll let you know more tonight.
Ξ January 3rd, 2005 | → 0 Comments | ∇ Jay |
Well, today was an eventful day! We went grocery shopping this morning before we left to go see Jay. Then we got to the hospital and Jay still had his breathing tube…but that is understandable considering it takes a Dr.’s orders to take it out and it was a Sunday…and (a fact important in this area) The Steelers were playing a foot ball game. So we stayed around the waiting room because they told us that they would take it out and get Sheila out of the room right after they take it out. Well around 4:45 pm this afternoon they took out the breathing tube and right after they took it out they went and got Sheila. Sheila went in there for a decent time and then 5:00 pm rolled around. I was gone and so Sheila came in to get my Mom to go see him…..(remember this is the moment we have been waiting for the last 7 days for Jay to actually talk to us and not be drugged) then I got tired of waiting around in the waiting room and decided to just go in there to see Jay (they were hogging all the time with him!) When I got there Momma and and Sheila were outside of Jay’s room and they looked awkward. I immediately thought something was wrong, and asked them what was going on. Well, apparently Jay coming out of a very long sedation time was still very drugged and the first thing he told the nurses (They asked, “John how are the feeling?”) after the tube was out was….”Guacamole”. Yeah that is right he asked for a Mexican/Spanish condiment. They they brought in Sheila and she said that he smiled at her! Sheila said it thrilled her to death and then she went over to him and look at him and then he told her something…she did not hear him very good and so she went closer to his mouth and listened better (his voice was raspy and rough…but you can’t expect much more) and Jay then told her in his best raspy Western voice, “I’m gonna kill you”. Sheila then knew that Jay was either totally with it or he was still on the drugs, and she had a good idea which one…..
Then he started calling for his mother, “Mommmmaaaaaaaaa, Mommmmmaaaaaaaa” so they went and got my mother and she walked in there and He looked at my mom and said, Mommmmaaaaaaaa…..shut up! Then he proceeded to say, “Momma F-You, F-You”, he then proceeded to tell everyone that he was going to kick their @$, and a few other choice words, heh.
Through out the entire episode he begged for them to let him out of the bed, and to take these things off of his hands (the restraints they put on his hands to keep him from ripping out his own breathing tube and IV etc….) He then ripped out his own IV and it was then the nurses gave him a sedation shot and he calmed down and went back to sleep. They cleaned up all the blood and then opened back open the curtain and from then on for the rest of the night he would moan a little more and shift his legs but he stayed much quieter and settled back down…
The nurses told him that this was not too different and they have seen it before…but what can you expect, your drugged, tied down to a bed, very week muscles, dry throat, and these people are hovering over you telling you to stay still and they love you…yeah I would freak out too, heh.
But, the good news is the breathing tube is out and he seems to be doing much better. They said that the drug causing the episode could stay in his body for a few more days, so we will just have to get used to it all. But he is well on his way to get back to the Cancer ward and then it will be time to kick some more cancer butt! The Dr.’s also said that they might be looking at getting my stem cells (i.e. bone marrow) while I am here and freezing them, but I am not sure if they would want them with me being sick (I am much better and only cough 6-10 times a day to clear my throat) But we will soon find out I am sure!
I will take a cusing brother wide eyed and mad any day over a brother on a breathing tube, heh. My mother was never suprised and Sheila and her just kind of laughed it off out side the room when I got there. Sheila tried to tell him that he would think this was all funny tomorrow, but Jay told her, “No it WON’T!” heh.
I felt sad for Him, because I can not imagine what it is like and to cuss out your mom like that and not have her take you over her knee must have been impressive, heh But man, I love that guy! He is so sweet and would NEVER do anything like that he is just scared, confused, and disoriented all at the same time…It just has to be hard…I wish I could do a Vulcan Mind-Meld with him and take on the pain just for a few seconds…..I love you Jay!
But all in all ALL Praise honor and glory go out to God for bringing him and us all this far and for the amazing road that god has laid out for him to walk is still beautiful! Thank you God….Thank you!
Well, we all got back here to the house and we played some more UNO this time with Sheila’s brother and soon-to-be sister-in-law. We all had a fun time, but needless to say I am VERY tired and I am going to bed!
Thank you all again for all your prayers they are working, but still VERY VERY NEEDED!
==============================
Love yall and here are Sheila’s last two emails:
Jan. 2nd Morning:
No news yet this morning. The same old , same old Doctors haven’t rounded yet.
Jan. 2nd Evening:
HE IS OFF THE VENTILATOR AND BREATHING FINE ON HIS OWN!!!!!!!!!!!! He is still
in ICU and will be there for the next few days if all goes well.
They removed him today to 4:30 and after that the adventure ensued. He was in a
very groggy state and was very scared. They asked him how he was feeling and he
said “guacamole”. I thought the nurse had it wrong but later he asked me for
some guacamole. He was having fits of rage because he was SO confused. He told
me to come closer and he said “I’m gonna kill you”. His mom came in and he
responded to her voice positively but if she kept talking he would lash out and
tell her to shut up among other things. He kept saying stop it you guys to the
nurses and then would say and I’m gonna kick you’re a**. This was so counter to
Jay’s personality and the nurse said it is not unusual. That many patients
respond this way because they are so frightened. Well, I think we all would be
if we woke up in a strange place, tied to a bed with a catheter and tube up your
nose, not to mention the oxygen mask and other monitors attached to him. He
recognized me as his wife and knew how old he was but not much else made sense.
He squirmed so much that he ripped out one IV. He had a really hard day. They
had to re-sedate him with what they call conscious sedation to keep him from
hurting himself. The nurse said it will take several days for the groggy
sedation to wear off. I felt so helpless because he was hard to understand and
thrashed around so much.
I know it was a hard step for him today but he will be so much better for it.
I’ll write more tomorrow.
Thanks,
Sheila
====================
Love yall, and thank you sooo mcu for the thoughts and prayers to get him this far….. so lets all please KUTPs!!!!!!!!!! Amen!
Ξ January 2nd, 2005 | → 0 Comments | ∇ Jay |
Well good news today! We showed up in Jays room at the appointed time (1:30 pm the first time they allow us to see him) and the Dr.s told us that All of Jay’s breathing today was on his own! The ventilator was just doing basic stuff for him! And the chest X-Ray was better and his vitals were great!!! So needless to say we are very happy! And it is a possibility that if they can tomorrow they might take him of the breathing tube and see if he can handle it! The Dr. said that he needs to be a little bit awake to be able the help the Dr pull out the tube..so they are slowly weaning him off the super knock out medicine and putting him on a lesser but still strong knock out medication, but this one is short lasting so they can administer it in shorter time intervals so that Jay can help the Dr. when the Dr is ready to pull the breathing tube out.
He might kill us, but I talked Sheila into taking a picture of him in this state (for two reasons…the one I told Sheila is that he looks like he is part of the Borg from Star Trek with all these tubes coming out of him, and the other reason is I think it will be very powerful to him all all those who will hear his testimony of how God was with him this entire time! And it will be a testimony to all of your prayers too! As soon as he is feeling better and maybe sometime I will try to get that picture and put it up for you to see what we have been seeing the past few days.
The rest of the visits were really basically us just loving him from a distance. They said his white blood cell count was way down (from the chemo so that is not a bad thing) and that means that he is really easily able to catch diseases and sicknesses so all of us were playing it safe and not hardly even going close to him. All the time today he just peacefully slept, except one time he did figit a little, but settled down after a while. Other than that we did our usual with going to a great sandwich shop across the street from the hospital and then spent the rest of the time playing UNO in Starbucks. It sounds crazy, but that simple card game sure helps to balance the problems going on and helps Tiffany, Sheila and me to just relax until we get to go back for the next visit.
Well, here is hoping for actually getting to talk to a responsive brother who is well on his way to the chemo ward to focus on the cancer and not his lungs!!!!!!!!
Great news hopefully tomorrow for all of us especially Jay!
================
I also talked to my Nanaw (grandmother on Dad’s side) and she still had a little bit of fever, but they were sending her to a swing bed room which is the room that she goes to right before they let her out! This is good news on the home front and I know that it is all because of your prayers! Thank you!
================
I also tried to “pimp out” Jay’s new Pocket PC, but I just could not get the darn thing to connect to the internet, so I guess he will just have to do that himself when he gets home some day! But sometime I will buy him some cool games and software for it!
=================
I also cut my hair today and will shave tomorrow…not totally I will leave my soul patch, but it will feel good to shave. I know I will probably not be able to go to a organized worship service, but who knows I might just do one here for the fam! (at the very least I will do one with God heh)
Well, as always here is Sheila’s emails from today and I must go to bed. These late nights are taking their toll, heh
Love you all and please continue to KUTPs!!!!!!!!!!!!!
=============
Jan 1st Morning:
I called today and no change so far but the Doctor’s haven’t rounded. I’m
getting ready to leave for the hospital. Another update this evening.
Thanks,
Sheila
Jan 1st Evening:
We just got back from seeing Jay. He still has the breathing tube in but they
said his lungs are doing all of the breathing. They have changed his sedation
to a short acting sedation so that they can try to remove him from the
ventilator tomorrow. His Hem/Onc Doctor said that he is getting and LP on
Monday with chemo in it because they suspect it has returned in his brain as
well. This will happen only if they get him off the ventilator as planned.
Everything else is pretty much the same. They gave him platelets twice today
and his white cell count has dropped significantly due to the chemo.
Hopefully, tomorrow he will be able to talk with us or at least nod.
We’ll write more tomorrow.
Sheila
=====================
Again…love yall and God bless have a wonderful Sunday! Oh and if Jay is taken off the breathing tube it will be exactly 7 days that it was when it got off……leave it to Jay to keep everything Biblical, heh. Leave it to God to do the same…..;)
« Previous Page —
Next Page »
