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Link Posted: 12/21/2018 10:49:34 AM EDT
[#1]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By ErikS:
I know your treatment uses your marrow but if you need some clean A+ let me know.  I will gladly hook you up.
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Hey Erik!!! thanks so much brother.  I really appreciate the offer. I'll definately let you know if i need it.  So far Im a-ok.

hope all is well with you and yours sir.

thanks again.
Link Posted: 12/29/2018 10:52:30 PM EDT
[#2]
Well, this past thursday i had to be admitted to the hospital here in lexington to change up my chemo routine. It was for a 10 hour chemo drip and then to be observed for the remainder of my night in the hospital. I had some anxiety about returning to the hospital after the last time i was there, but overall this visit went just as was planned. In fact it was nice to see many folks that cared for me before, and they were all very kind and glad to see me, which overall made me fell good that they thought i was doing so well.

Anyways, the Chemo went without much of a hitch although i am experiencing some insomnia and a bit of naseaua from time to time. I will next wait for the phone call from my normal chemo nurse to schedule my next chemo appointment as an outpatient as before. from what i understand this should take 5-6 hours to administer per drip per week. I believe it will be on next thursday that this starts.

Thank you all for any donations, prayers, or kind thoughts, as i can use them all desperately.
Link Posted: 1/10/2019 9:57:58 AM EDT
[#3]
as i write this, im sitting in Lexington hospital as outpaitent chemo treatment.  I tell you i hate chemo, and i honestly never knew what it was all about till i had to go thru it.  Ill start to feel like crud in a few days and that will last 2-3 day so right as im starting to feel well again, itll all come back on me . Ugh.  anyways, im gonna be posting and surfing till i have other stuff take my mind off the chemo or till i pass out.  sleep is easy here for some reason.
Link Posted: 1/11/2019 7:44:23 PM EDT
[#4]
well today i started another chemo, on top of my other chemo drip.  this is a pill i take every day that cost about 25k per prescription. I was on its sister drug before but it didnt do enough . this one should be stronger and thus should get me even further down the road towards remission/curing.

keep the prayers coming yall . i truly appreciate all the support you provide me.
Link Posted: 6/30/2019 8:32:10 AM EDT
[#5]
I am coming into this very late.  In just reading this thread, I am emotionally involved and want to know how GMO is....

RadioUser843
Link Posted: 7/8/2019 9:56:00 PM EDT
[#6]
Hey guys, i figured i'd give yall an update. These past few weeks have been a roller coaster ride for me of emotions. June 23, 2019 was my 100 day anniversary since i began my bone marrow transplant.  As many of you will recall i had to stay in a hotel for a  month in charleston (including the week that i was admitted for pneumonia).  The bone marrow transplant went well overall, minus the Pneumonia of course, but they were able to take care of me and get me over that.  At 31 days they released me from having to be local, which is great, because after having to spend 7400.00 for the hotel alone i was getting pretty tapped out cash wise, and we returned home to Lexington. Once in lexington i had to stay out of work for two to three weeks, before i returned.  I've been in and out of work since then, but luckily my work has been very understanding and helpful with this and they've let me work from home.  So fast forward to my 100 day checkup which took place 4 days after the actual 100th day.  They did my bloodwork and what not and thank God, i had a partial response!  My numbers were going down fast, and were way low (which is a very good thing) basically the way its done is this :

Myeloma response criteria is:
- complete response (no myeloma detected on labs/ blood work/ bone marrow)
- very good partial response (90% of the myeloma is gone)
- partial response (50-89% of the myeloma is gone)
- stable disease ( numbers do not meet criteria for partial response or progressive disease)
- progressive disease (numbers are increasing).

The IMWG is who made this criteria (International Myeloma Working Group)

The good news also is that not only am I in partial Response, but my numbers may continue to go down as i continue on my maintenance program of a chemo drug.  so i'm very happy with those results thus far.  So much so that my wife planned and executed a very nice 100 day celebration party for me on the 29th.   Some of you such as @d16man and @palmettostatearmory josiah did me the honor of coming to the party. It was a great time, however this past weekend i got some very bad and sad news.

You see when i was diagnosed in may of 18, i  found out that a high schoolmate of mine named Denise was also diagnosed with the very same cancer i was, Multiple Meyloma.  As i fought my battle she fought hers, and we talked via facebook fairly often about how each of our battles were going. Around january she told me that she was in remission, and was able to be there solely by having underwent chemo therapy and radiation.  I was envious as i was ramping up to go to Charleston, for my BMT(bone marrow transplant). I had been undergoing Chemo treatment for 3/4th a year by this time, and had LONG been done with my radiation therapy.  I had had some issues with the chemo, in fact they had to change my type three times before it really started to make a dent to drop my counts and get me ready for the BMT.  And finding out that Denise had been lucky enough to get into remission without having to do a Bone Marrow Transplant made me very jealous.

Nevertheless, Multiple Meyloma effects each person differently. Denise had a lot of other issues than i had, from the Cancer.  where i was broken vertibrae's left and right, and breaking ribs, and a broken sternum, and things like that, Denise not only had broken bones but she also had became paralyzed as well.  So while i was healing and able to move, and even though Denise was in remission, she couldnt return to her normal life.  When i had came out of my BMT and returned home Denise was still being treated and i was healing up.  Then about two or so weeks ago Denise told me that she's been having more difficulties, and that she's stopped having any reaction her chemo treatments and her radiation treatments. But the worst part of it, was the doctors told her she had only about 8 or so weeks left to live.  This really was a sad thing to hear, and i continued to try to be brave for her by being positive when we talked, and also i continued to pray more for her.

Well this past sunday sadly Denise lost her battle with Multiple Meyloma Cancer.  I cannot believe she's gone so fast, and i cannot believe that she went so quickly compared to what the doctors gave her.  To know that I'm fighting the same fight, no matter how different it effects us as individuals, really has been messing with me since she passed yesterday.  I am comforted knowing she is in a better place with her savior Jesus Christ, but at the same time i know a great person has left this world just a bit dimmer, and a bit more sadder.  The reality is, it could have just as easily have been me, in her shoes, and that too bothers me.  I will continue to try to be as positive as i can, and I will continue to try to fight this evil disease as much as i can, but the fact remains that I have it, and until its gone that is all i can do.

I truly appreciate all of my support system, family, friends, and Pastor, without them i'd be lost.  Also, I couldnt have made it this far without you guys having supported me as much as you have in the past, and currently with your prayers, positive vibes, and the donations you all had donated to me. Some folks have asked how they can help me, and how to donate to me, and while I have a GoFundMe, I dont know if i should post it up here or if it would be against the forum rules. I also can still accept donations at my Paypal as gift.  It is my username here @gmail.com if you want to use that route; but mostly, please continue with your positive vibes, positive thoughts, and Prayers for me.  Without those, I wouldnt be so successful with this battle as i have been thus far. Thank you all again. and please if you dont mind send up a little prayer for my friend Denise and her family, may she rest in peace. She's finally without pain now, and truly without this evil Cancer.

p.s. sorry for the wall of text.
Link Posted: 7/18/2019 10:09:50 AM EDT
[#7]
all,

a brief update.

yesterday i had an appointment with my local oncologist.  we discussed how my back is, and while my Dr. Tried to go to bat for me to have my khyberplasty done, the orthopedists didn't think it was a good idea yet.  So at this time they are not doing anything to my back for the pain.  The most they're going to do right now is manage the pain as it is, until enough time has gone by for the bones to be more stable since the bone marrow transplant.  the back pain is my major complaint as far as my daily issues are concerned.  the numbers hare all coming up according to my labs, and are showing that they are perfectly in line, and that is a great thing.  Im just wishing the back pain, and my fatigue, would go away.  that way id be back to normal of some sort.  In order to maintain my "normalcy" in my  numbers my Oncology team has decided that i need to be put on a maintenance drug.  I may have mentioned this in my previous post.  This drug is a Chemo that i was on before.  I'm not sure how much / many milligrams it is going to be, but Ill be starting it soon as it is mailed to me.  I'm not really looking forward to this, as with any chemo treatment the side effects are less than desirable.  Nausea is the big one i hate and that is probably the primary one that is going to be affecting me. Anyway, thats where we stand right now. I'm not looking forward to the chemo, but otherwise im doing pretty good as of right now. Heck even my hair's growing back in finally. as time progresses, i'll be sure to try to keep this thread up to date.

thank you all for everything.
Link Posted: 7/29/2019 1:22:10 PM EDT
[#8]
Another update.

Today 7/29/19 is Day 1 of the 21 day cycle of my maintenance chemo.  The drug is administered in a capsule form, and i have to take it once a day for 21 days, then i have 8 days off, and then it starts all over again.  While its a good thing, overall, the maintenance chemo is to keep my Multiple Myeloma at bay. It is supposed to help keep my numbers down, or going down.  At this point, It's only making me  feel a bit fatigued, and i hope that's all the side effects i experience.  being nauseated is to me one of the worse things that Chemo does to oneself, and if this can skip that stage i'd be forever grateful.  The loss of appetite that comes along with the Nausea is sometimes welcome for losing weight at least lol.   Last Friday, i had an infusion i had to go to.  This was a bone strengthener infusion of medication.  I got it done in I wanna say 2 -3 hours.  basically its an IV drip and once that medication is in i don't have to have another for another three months.  My next follow up appointment however is next week i'm sure.  Every other week i have follow up appointments with my local oncologist team.  my Charleston transplant team only wants to see me again every other month or so, so right now i'm in the clear from any long distance commuting for a while as long as my numbers stay good and that things dont get worse on my end.  Please continue with the prayers and support as I need all of it i can get to continue the fight. I cannot thank you all enough for the support you've given me, without yall's prayers i'd truly be lost. Thank you so much again.
Link Posted: 8/11/2019 6:06:45 PM EDT
[#9]
Update for the Dr. Appt on August 9th.

I had a followup oncologist appointment this past week.  it was a basic lab visit, with a consult after the labs were drawn.  Well the lab went well, and they were able to stick me and draw blood quickly the very first attempt. This was nice as i've been stuck so many times it's been . hard for me to have good veins for them to find  on me to pul more blood.  this technician however was a master at her craft and was able to not only find a vein but find one and stick it on the first attempt, without rooting around, poking repeatedly or anything like that that is horrible when you've been stuck as many times as i Have.  So after i donated my 5 vials of blood i went in to the waiting room again and waited to be called back to see either my Nurse practitioner or my physician.  This time it was a visit with the nurse practitioner.   She didnt have much of my lab results back by the time i was called back because it was moving so quickly this particular morning.  What she did have we went over as being very positive in the numbers and that is a good thing.  I was happy to hear that my numbers were all looking so good.  So after a brief meeting with her, she and i parted ways.   I then went to my truck and drove home.   When i had arrived home however, i received a phone call.

The call was from my oncologist's nurse.  The nurse informed me that evidently my liver enzymes were highly elevated especially when compared to last time, and as such, my nurse practitioner wants to schedule a torso ultrasound for me to see what if anything is going on with my liver.  The only thing that has changed since the last month labs and this month, is that i've started my maintenance program of Chemo medicine, and while one wouldnt think that one pill a day could do that much I wouldnt doubt it.  I am praying at least that it is just that, related to the chemo pills and not anything serious.  Time will tell.  As of right now i do not have a date or time scheduled for the Ultrasound, however i believe that i will have a date sometime early this coming week.  Speaking of this coming week....

on August 14th, I have to actually go into work, as i have to take part in a training lass with my co-workers on a new software package that we will be using to log work orders.  I am going to try to work the full day, but I do not know how my back will do with this.  Worse case scenario is that i can only do half a day and have to go home at lunch, and then telecommute once i get home to finish the training.  Time will tell how my back does then though.  Honestly, most of my ill feeling is due to my back pain, and if my back were to be fixed, i wouldnt be in pain and could possibly return to some sort of a normal semblance of life.  Anyways, at this point that's where we stand.  I'll let yall know where the ultrasound leads and what if anything it finds. Thanks for the continued support, and prayers.
Link Posted: 9/3/2019 8:02:37 PM EDT
[#10]
it's been a rough weekend, over labor day weekend i contracted Pnuemonia.  I knew something wasnt right cause i felt hot, so i took my temperature, and sure enough 101.4 so we went to the hospital.  i'd been in the hospital for about 5 hours saturday in the er trying to get it under control.  they IV'd me and gave me fluids and antibiotics. .then sent me home with augmentin, an antibiotic.  come sunday i was ok, but monday i was getting worse, temp went up to 102.8 at its highest and i couldnt get it to break really so i had to call the on call nurse in oncology again.  she prescribed me another antibiotic, that is more sutied for me without an immune system, its name escapes me now.  I took it monday evening, and it evidentially started working fairly quickly as i was actually able to get a . nights sleep without too much chills or sweats.  Today, i still wasnt 100% and on this new antibiotic i can only take it once per day, so ive just now taken it again this evening.  Hopefully it'll really start kicking things into high gear and i will have an even better night tonight, and better day tomorrow.  i've been miserable and pray that im only going up from here on in.

prayers are always appreciated.
Link Posted: 9/3/2019 8:10:38 PM EDT
[#11]
Sucks to hear about the pneumonia.  I got a mild case of that following my surgery.  It sucks, I know.
Link Posted: 9/6/2019 7:57:42 AM EDT
[#12]
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Originally Posted By ErikS:
Sucks to hear about the pneumonia.  I got a mild case of that following my surgery.  It sucks, I know.
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hey erick, yes it does suck. what sucks more, is that i've not been getting any better.  thus yesterday, i was admitted to the hospital again..  Im . hoping that this wont be a long stay, maybe a day or two, but at least here they are able to pump me full of anti biotics.   ive had a day full of no fever until around 5pm when i spiked up to 100.4, and followed by a rough night full of sweats, but no fever.  Please continue the prayers as they are vastly needed.
Link Posted: 9/8/2019 5:26:16 PM EDT
[#13]
Sorry to hear about your struggles with pneumonia, more prayers for your recovery.
Link Posted: 9/8/2019 6:35:26 PM EDT
[#14]
Keep your head up.  We are with you.  Thanks for keeping us up to speed.
Link Posted: 9/10/2019 11:20:46 PM EDT
[#15]
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Originally Posted By MarkBinSC:
Sorry to hear about your struggles with pneumonia, more prayers for your recovery.
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Originally Posted By MarkBinSC:
Sorry to hear about your struggles with pneumonia, more prayers for your recovery.
Thank you.  I appreciate that.

Originally Posted By ErikS:
Keep your head up.  We are with you.  Thanks for keeping us up to speed.
I'm trying sir!  I appreciate you guys having my back.  Here's the full update of the last two weeks or so just about :

Around the week ending August 30th, I had to go into work  to be trained up on a new software program so that i may continue to work from home when my health permits.   That Friday I started feeling a bit warm, even when others around me were quite cold.  I didnt think much of it, but went about work as best i could and went home.   Saturday morning however, things changed drastically.   I started feeling much worse.

Turns out that when i took my temperature i finally was showing a temperature of 102.8.  This prompted me to call the oncall nurse for both my oncologist, and also my  Bone Marrow transplant team.  Both suggested the same, and that I go to the Emergency Room.  I did so.  I spent the next 5 hours in the ER, they pumped me full of fluids via IV as well as IV antibiotics.  Ended up sending me home with an antibiotic prescription, and called it even.

Sunday i felt decent, and not much fever / sweats, but  sunday night/monday morning it changed.  I started having fevers again, These fevers started ranging up to 101.9 so i called the on call nurse again.  She stated she wasnt pleased with the antibiotics the ER doc prescribed, as he was not as well versed in my condition due to the bone marrow transplant, and thus she prescribed a new antibiotic.  My wife went and picked it up, and i started on that regimin, while alternating between tylenol and motrin every 4 hours.  this seemed to manage somewhat the fever for a while.  However it didnt completely.

Every 8-12 hours i'd start having fevers again and start having the chills and sweats.  So back to the On call doctor/nurse i called.  By this time its now Wednesday and they schedule me for a in office appointment thursday morning..  So i go in thursday morning,  September 5th, and get bloodwork done.  My Oncologist gives me a good look over, and she says to me that i'm not passing the eye muster test.  I look horrible, and she thinks with my permission, that i should be admitted to the hospital.  My wife and I, as well as the Doctor all are in agreement,  and i was admitted to the hospital.

Once i was admitted, they not only performed x-rays and ultrasounds, they also had to have a mid-line /pick  line put in because my veins have been abused so much by the cancer treatments and constant blood drawing/ iv's inserting, that they cant find one easy to tap to get IV's going on me.  So once they put the dual IV mid Line in they started me on 4 IV drips of antibiotics, 1 of fluids, and then 2 push syringes  of antibiotics as well.  This was basically my life in the hospital from Thursday the fifth  of September until Saturday the 7th of September.

Thankfully, as my birthday was coming up on the 10th, my doctor team said if i had felt well enough, and if they thought i was looking and doing well enough, I could go home.  This was most welcome news, as we had planned many months ago for my in-laws to come in for my birthday to have a small celebration here at home.  Thankfully i was permitted to go home.  While i didnt feel 100% i did feel much better than I had.  We had a quiet saturday evening watching the Carolina Gamecocks football game, and then I tried to sleep.

When they sent me home from the hospital, they prescribed new antibiotics, and steroids, which unfortunately the steroids had a nasty effect of keeping me awake.  I didnt get much sleep saturday, sunday i tried to rest as well, and while still on my antibiotic regimin and steroids i didnt get much sleep sunday night either but it was much better than saturday night.  Luckily, monday however, i did start to get some sleep, and I slept through the night monday night.

The worse part about this pneumonia besides the just physical fatigue is the fact that I had the chills and sweats and uncontrollable body temperature swings.  it makes trying to sleep dang near impossible.

As of now, thankfully, It's tuesday night, the night of my birthday, and after having a wonderful day spent with my family, and a great meal I'm preparing to go to sleep.  I cannot wait to get another nights sleep in comfort without shakes and chills.   It's funny . how as you get older the things that are most important to you change.  And hearing from my close friends, spending time with them and my family, mean the world to  me. So with that i will cap off this update, a grateful birthday boy, who has just turned 44 today.  Thank you all for your support, your love, and most of all your prayers.  I could not fight this horrible disease without you all having my back.
Link Posted: 9/10/2019 11:41:03 PM EDT
[#16]
Thanks for the update.  Have been following.  We will be praying for you to get better from this.  You have had a rough time but I hope your spirits have not sagged.

Go Cocks!!!
Link Posted: 9/11/2019 11:36:05 AM EDT
[#17]
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Originally Posted By Macumazahn:
Thanks for the update.  Have been following.  We will be praying for you to get better from this.  You have had a rough time but I hope your spirits have not sagged.

Go Cocks!!!
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thank you macumazahn, id be lying if i stated that my spirit havent sagged from time to time as they have. However thanks to you guys, and my family, and PSA having my back, supporting me, and cheering me on praying for me, etc, i've been able to bounce back.... I do not know how folks can fight this or any cancer for that matter without having a support structure.  I've been so blessed by the members of ARfcom, and the big family of folks that make up PSA. Everyone from the Ownership down to the newest counter clerk, have always been nothing but great to me.  Add that to my loving wife whoom i'd be truly lost without and our immediate family, I'm truly blessed. I dont mean to miss anyone of my support so please forgive the long winded response.

all of that to say, my spirits have sagged and rebounded numerous times thanks to everyone who supports me though the rebounds are possible. Please keep the positivity, support, and prayers coming, for without them i'd be lost.
Link Posted: 9/11/2019 12:05:53 PM EDT
[#18]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By GamecockOperator:

thank you macumazahn, id be lying if i stated that my spirit havent sagged from time to time as they have. However thanks to you guys, and my family, and PSA having my back, supporting me, and cheering me on praying for me, etc, i've been able to bounce back.... I do not know how folks can fight this or any cancer for that matter without having a support structure.  I've been so blessed by the members of ARfcom, and the big family of folks that make up PSA. Everyone from the Ownership down to the newest counter clerk, have always been nothing but great to me.  Add that to my loving wife whoom i'd be truly lost without and our immediate family, I'm truly blessed. I dont mean to miss anyone of my support so please forgive the long winded response.

all of that to say, my spirits have sagged and rebounded numerous times thanks to everyone who supports me though the rebounds are possible. Please keep the positivity, support, and prayers coming, for without them i'd be lost.
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I knew you had support from us, how has PSA been involved?
Link Posted: 9/12/2019 4:26:38 PM EDT
[#19]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By ErikS:

I knew you had support from us, how has PSA been involved?
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psa has stated they are going to donate 5.00 per lower sold of the f'cancer lowers to me to help with my bills.

plus the past they helped iwth the raffle, donating guns, and also they donated to me a PCC 9mm rifle in gamecock hydrodip. among other things. theyve been great, helping me with things.  just as . you all have as well.
Link Posted: 9/12/2019 6:45:02 PM EDT
[#20]
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Originally Posted By GamecockOperator:

psa has stated they are going to donate 5.00 per lower sold of the f'cancer lowers to me to help with my bills.

plus the past they helped iwth the raffle, donating guns, and also they donated to me a PCC 9mm rifle in gamecock hydrodip. among other things. theyve been great, helping me with things.  just as . you all have as well.
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Very cool of them. Stay strong.
Link Posted: 9/12/2019 9:37:53 PM EDT
[#21]
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Originally Posted By ErikS:

Very cool of them. Stay strong.  
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thank you sir. i am on the rebound once more recovering from this pnuemonia.  Again, without all you guys backing me up having my back in prayers and thoughts and everything i could not fight this fight.

truly numbers matter here.  thank you for your support Erik, it means more than i can put into words.
Link Posted: 9/26/2019 11:21:12 PM EDT
[#22]
just a quick update, as today @d16man and i went down to charleston for a doctor visit to my bone marrow transplant team. It was a routine check up/check in with them.

long story short, I Got a great review by my doctor in Charleston. My labs are great and I don’t have to come back to Charleston for another checkup here for another six months!! All praise to God. My doctor, Dr. Napoli said that I’m on path for the six to nine month remission plan that he’s seen with some other patients. and he thinks that is what my numbers are trending towards, So we can pray for that!!! Thank you all for your support and prayers, i could not have came this far without all of your support, prayers, and well wishes.  I'm a believer in the power of Prayer, so please keep those coming as they've really been a huge help to me.  I cannot thank you guys enough, everyone who's helped me, large or small, has really humbled me, and just made me be at a loss for words.  Thank you all so much for your kindness support, and prayers.
Link Posted: 9/27/2019 6:06:14 AM EDT
[#23]
Great news.

Have you seen Ed Srs thread?  If not go to team and check it out.
Link Posted: 9/27/2019 3:58:39 PM EDT
[#24]
That is great news GamecockOperator, glad to hear that you are getting better and better.

We are all behind you, please keep us in the loop on your progress.
Link Posted: 9/27/2019 5:14:42 PM EDT
[#25]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By MarkBinSC:
That is great news GamecockOperator, glad to hear that you are getting better and better.

We are all behind you, please keep us in the loop on your progress.
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Originally Posted By MarkBinSC:
That is great news GamecockOperator, glad to hear that you are getting better and better.

We are all behind you, please keep us in the loop on your progress.
thank you so much @MarkBinSC  I appreciate that more than you know.  I definately will keep everyone in the loop, if not me, @d16man will fill in for me if im ever unable to update, which i do not anticipate, but better to have him on deck than not.

Originally Posted By ErikS:
Great news.

Have you seen Ed Srs thread?  If not go to team and check it out.
@ErikS  No i havent seen Ed Srs thread.   I'll head there in a few to do that.  Thanks though Erik for all your support sir.  I do really appreciate it.
Link Posted: 9/27/2019 5:24:17 PM EDT
[#26]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By ErikS:
Great news.

Have you seen Ed Srs thread?  If not go to team and check it out.
View Quote
ok, ive looked and i cant seem to find it, do you have a direct link you can point me to?
Link Posted: 9/27/2019 5:45:23 PM EDT
[#27]
Link Posted: 9/27/2019 5:46:30 PM EDT
[#28]
Discussion ForumsJump to Quoted PostQuote History
Thanks so much! gonna start reading now.
Link Posted: 10/7/2019 4:08:55 PM EDT
[#29]
So today is October 7,th, and i've started my last 21 day round of my 4mg Chemo drugs before i get dropped down to 2mg in 29 days.  I had felt pretty good the past 8 days, (those days were the days that i've been off my chemo cycle)  and now im back on it and i've felt very fatigued, and not too well overall. It's hard to describe. it's almost a blah feeling overall.  Anyway, I hope the next 21 days goes smoothly.

Last week i was able to get my Flu-Shot.  The shot was for the most part painless, but like normal the next two to three days i felt a bit miserable due to the normal side effects the shot gives to folks.  So, i'm doing fairly well getting my immune shots lately.  I have to go back in 3 months to get more baby shots.  Once i do that, theres another round of shots in 3 more months after that etc, all the way out to 2 years.

So thats where we are at at this time. Not much really going on, just wanted to touch base with everyone and let yall know how im doing currently.
Link Posted: 10/7/2019 8:22:55 PM EDT
[#30]
Thanks for the update. Glad to hear more positive news in your treatment.

I never knew that you had to redo your baby shots after all those treatments. I guess your body lost all its resistance to those diseases.

Wishing you all the best
Link Posted: 10/7/2019 8:57:31 PM EDT
[#31]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By MarkBinSC:
Thanks for the update. Glad to hear more positive news in your treatment.

I never knew that you had to redo your baby shots after all those treatments. I guess your body lost all its resistance to those diseases.

Wishing you all the best
View Quote
thank you.

i had to redo all my baby shots because of the Chemo before my bone marrow transplant.  It wiped me out of all my immunizations. Once i got done with the bone marrow transplant they told me 6 months later i'd have to get all my baby shots redone on the schedule that they administered them to kids on. evidently that one chemo they give you before the bone marrow transplant is so strong, it wipes everything out, including making me loose my hair, and everything else, it got rid of my immunizations.   so now im on the way to getting them redone now.

i hope that makes sense i feel like i was kinda going round and round there.

I appreciate your positivity and support man. it means alot
Link Posted: 12/19/2019 10:05:03 PM EDT
[#32]
@GamecockOperator

How have you been doing? Wishing you and family a Merry Christmas and continued recovery in 2020.
Link Posted: 12/20/2019 11:53:59 PM EDT
[#33]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By MarkBinSC:
@GamecockOperator

How have you been doing? Wishing you and family a Merry Christmas and continued recovery in 2020.
View Quote
@MarkBinSC

Hey man, thanks for asking.  I'm doing ok these days.  I'm still on chemo, and that cycle is 21 days on, 7 days off.  The doctors believe i could be entering a remission period soon, so i'm hoping and praying for that.  then maybe they can address my back's situation and get me some of my height back and remove some of the pain i have there.  Pretty much the backpain is the most pain i have now a days.  I cant walk for long distances, and i cannot stand for long times, i allso cannot lift things either.  I've had to have a few more root canals due to the cancer and chemo which are doing nothing but destroying my bone/teeth so that is always fun, but it's one of the things i have to deal with.  I get nausea a lot still and hot flashes much like a woman going through minopause, but what can you do again its part of the cancer issues.  Overall though man i dont want to complain, i have it far better than many with cancer, and i'm thankful as all get out for that.  I appreciate you, my family and friends, and other ARFCOmmers who support me, and pray for me.  Without you all in my support system this would be much harder of a fight for me to do.

I wish you and your family as wel a very Merry Christmas and a Happy New Year as well sir.  thank you so much for asking about me.  It made my day!
Link Posted: 1/8/2020 11:25:42 AM EDT
[#34]
It's been a bit since i updated this thread.

I'm coming off of a head cold /sinus thing that was giving me  a nasty cough and a sore throat. i'm glad im almost over it now, but the cough is lingering.  I feel ok otherwise, and am in (currently) a week off of chemo.  I do not know if you all are aware, but PSA produced the F'Cancer lower, and the Screw Cancer lowers with the intent of donating some of the sale price to causes that could use the extra money.  The F'Cancer lower, they stated they would donate 5.00 per sale of the lower to me, to help with bills and the like.  The Screw Cancer, they were going to donate to a major hospital, which due to the regulations of them accepting the funds they have to now remain nameless, but if you followed the thread in the GD you'd know which hospital system it is that fights cancer for kids. :)  Each lower receiver had a run of 2000 lowers total, which is a hefty sum to help with bills and he like for people, or research and what not for hospital systems.s

All that being written on January 6, they presented me with the first of two checks for $5000.00. The second check will be presented after the other 1000 lowers have sold out. I will post a photo of the presentation where Julian and Josiah presented me with the check, as soon as i get it from Josiah.(i've since received the photo in email, and have it posted below)

I am incredibly humbled and thankful for the support that PSA has shown me over the past 2 years since i was diagnosed with this disease. The fact that they have adopted me and have helped me as much as they have is just amazing to me since i've never worked for them, and have only been a real big cheerleader and fanboy of their products. I'm so humbled i've been at a loss of words about it honestly. Just like i was at a loss for words with how much support and care ya'll here at Arfcom have shown me as well. I'm truly blessed to be a part of both the PSA and Arfcom families. Like i said, i'm beyond humbled, and very very thankful.  Here's the photo of Josiah, me, and Julian Wilson:

Link Posted: 3/3/2020 11:13:30 PM EDT
[#35]
It's been a while since i had an update to this thread, so i figured i 'd write one up.

Lately i've been managing my cancer with Chemo, and a monthly infusion for strengthening my bones. I have not had any major issues thankfully.  i've had a small cold here or there, but overall i've been relatively healthy thank God. This friday i go in to see my Oncologist again, and i will have another bone medicine infusion, labs drawn, and probalby see my physician again as well. Its pretty standard at this point because the last few times ive gone in my bloodwork has came back pretty good.  As long as it continues to do so, they are labeling my current condition as "well managed".  This is different from in Remission, as i still have active cancer and without my chemo regimin holding it back i would be in trouble i think.  With the chemo regimin, im able to keep the cancer at bay at the low levels its at since th bone marrow transplant.  While i'd prefer for a full blown remission, or even better a cure of the cancer, i'll gladly take well managed.  I dont know if I will ever be cured or not, I will continue to pray for it.  I do still have pain in my lower back, from standing, walking, or both for periods of time.  these periods are not mlong to most folks but to me they are.  anything over 5-10 minutes it starts hurting considerably. I did have an MRI last week  or the week before last to see if ther ewas anything that could be done to my back to help this pain, and we'll hopefully go over that information when i go to the doctor on friday.  I am praying that they say there is something they can do. and whateever it is hopefully they will give me back a few more inches of my height, as wlell as straighten my back out some.  I kow its a little vain, but i really dont like being hunched over like a hunchback...

ANyways, thats about it for me these days.  I am working still continuously from home, which is a big blessing as well.  Thank you all for your continued support of me, and my ramblings. I wouldnt be here without such good friends and family 9my arfcom extended family. thank you all agian
Link Posted: 3/17/2020 6:03:18 PM EDT
[#36]
well i did it agian.

i went into work last friday for the final main department meeting of my department since now people are getting jobs and leaving because prisma is laying them all of on mar 8
well it was a catered one, and we talked about work a lot, then we also turned to the prisma situation.  so far we know 5.5 jobsa are going to be available thru prisma and weve had our guys apply who were interested there.  No word if any are going there.  then we still dont know if the school will reincorporate jobs in their field to bring us back over. we're hoping sobesides the 4 of us that are still state job holders already that is.  but thats not the real update. the real update for me is sunday came around and i was again sicker than a dog. 101.9* temperature, coughing scrachy throat, headache etc.   called my oncologist they called in a zeepak ofr me and with the promise ifi got worse to call them back to come in.  The feverluckily broke sunday night, and ive been healing ever since.  but it sure seemslike every time. i go to work i get sick :(.
Link Posted: 5/14/2020 10:34:56 PM EDT
[#37]
Hope all is going well.
I can’t imagine the roller coaster your life has been I’ve the last two years.
Link Posted: 5/15/2020 9:44:07 AM EDT
[#38]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By mc556:
Hope all is going well. 
I can’t imagine the roller coaster your ­life has been I’ve the last two years.
View Quote



MC,
thank you.  things as of lately are as well as can be expected for someone with my condition.  I had two recent doctors appointments, and both turned out very well. The latter was a simple follow up and it was my last baby shots update.  So now i'm complete again for having all my baby shots updated again.

As for my roller coaster, it has been quite a wild one that i would hope no one ever has to ride.  I am doing much much better now than i was two years ago.  That said, im still far away from 100%.  I cant remember if i posted about this already, but last month i had an MRI on my back, and was referred to the back and spine  folks to see if there was anything that can be done about my back.  My back is the major issue ive had the past two years and was what started this whole ride.  I originally thought i had back problems which turned out to be the cancer.  Long story short because i have severe osteopirosis, and my bones are so brittle, there is nothing that can be done for my back surgically, or otherwise.  In the past two years, i've broken 7 vertebrae via compression fractures.  this has in turn caused me to loose 7 inches in height.  and have pain routinely when i stand long time, walk a good bit, lift things, or any other physical things. The doctors at the brain and spine informed me that i will have to live with it this way the rest of my life,e and remain on pain medicine for the duration as well   It's a shame really i had  hoped that they would be able to fix my back, and  get me off the pain medication.

so thats the biggest change / information at this time. That was the part of the roller coaster that sucks... well that and the bills LOL. There has not had been much change lately for me with the Covid stuff because i was already largely working from home alone normally.  While  i know it has been a huge change for others, for me, it hsnt changed my routine much. There are other things that have, like my job having half of it shut down because of our merger with Prisma Health, and over 14 people being laid off in my department because of that. .. which totally sucks because we were more of a family than a work place.  ut you do what you have to at work, and im blessed so far for having my state job still.

so yeah, theres a little snapshot of my roller coaster lately.  I know it was more than most bargained for to read, but i do appreciate you asking, and commenting here about it/me.  One last thing before i go, is i cannot thank PSA, and its employees, and ARFcom, its members and employees, and especially D16man here, Josiah, and countless others at PSA for being such great supporters of me during this battle.  I dont know where i'd be without their support, positivity, and overall care for me during this time of need
Link Posted: 5/16/2020 9:21:17 PM EDT
[#39]
@gamecockoperator

Thanks for the update, glad that you are doing well in all of this craziness.

God bless and stay healthy
Link Posted: 5/17/2020 11:33:44 PM EDT
[#40]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By MarkBinSC:
@gamecockoperator

Thanks fo­r the update, glad that you are doing well in­ all of this craziness.

God bless and stay healthy
View Quote



Thank you so much MarkBinSC. I Truly appreciate the well wishes and all that you and everyone else here has done for me. I wouldnt be here today without yalls support, adn the support of my family, and that of other good friends as well as the good folks at psa.  I'm a product of a great support group, as well as a great physician team(s) My goals, are to keep doing well, and keep being healthy as i can be. during all this and well after.  I hope you and yours are well, as i do for all of us here.

take care yourself. :)
Link Posted: 9/19/2020 8:00:04 PM EDT
[Last Edit: Gavachui] [#41]
what are they doing for treatment right now?

I am in my 8th year of brain cancer treatment & am currently doing experimental gamma radiation at MUSC

after 8 years there is very littel I have not learned about cancer  Have him IM, email or call me I will talk to him if he will listen?

best of luck to all the cancer fighters out there  God please let us keep kicking ass.

Heck if any one wants to meet up & BS I love a nice burrito. i'll buy

@gamecockoperator

Link Posted: 9/19/2020 8:08:30 PM EDT
[#42]

My treatment starts tomorrow with Chemotherapy, Steroids, Radiation, and then calcium infusions once a month.  These are to last between 4-6 months.  If all that goes as planned, they will  then refer me to a larger cancer center such as duke, emory, or MUSC or something to do a bone marrow transplant/refresh.  This from what i understand is done with my own existing marrow being extracted, cleaned and then reimplanted. Im assuming its some sort of stem cell therapy type deal
View Quote


those steroids are evil dude

threy will stop all the pain & inflamation. but they lower your blood sugar so you are hungary about every 3 hours
& you woll also have to piss about every 30min

after a few years on the steroids your  develop cataracts so be ready for that too eat lots of fiber the chemo will plug you up & make your terds rock hsrd


ask now for smething to help you sleep the sexamthazone steroid will prevent you from sleeping too

good luck to you shoot me an IM or email.
Link Posted: 9/22/2020 6:38:36 PM EDT
[#43]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Gavachui:
what are they doing for treatment right now?

I am in my 8th year of brain cancer treatment & am currently doing experimental gamma radiation at MUSC

after 8 years there is very littel I have not learned about cancer  Have him IM, email or call me I will talk to him if he will listen?

best of luck to all the cancer fighters out there  God please let us keep kicking ass.

Heck if any one wants to meet up & BS I love a nice burrito. i'll buy

@gamecockoperator

View Quote


Hello Gavauchi ,
for treatment for me right now they are doing maintenance.  I'm on chemo pills every day on a 21 day cycle with  8 days off, and i also am getting an infusion once a month at my local oncologist office.  I have been put on a every quarter meeting with MUSC right now, so i dont go there often at this time.  They manage my stats from the stuff my local oncologist takes and until they see anything wrong they wont call me in.  God Bless you for fighting 8 years with brain cancer and doing the experimental stuff.  I cant imagine what  you've been through with that.  I'm pretty lucky that im in a "well maintained" pattern right now. Yes its not remission, but its the next best thing.  I still have pain in my back from where my bones were broken (compression fractures that happened pathologicaly from the cancer) but other than that im doing pretty well.  

Amen to us who are fighting and keep kicking ass!  I will add you to my prayers in hopes you continue to keep fighting hard.  we should meet up at the next cola crew meet of Arfcom and maybe all get to know each other.

take care sir.
Link Posted: 9/22/2020 6:41:32 PM EDT
[#44]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Gavachui:


those steroids are evil dude

threy will stop all the pain & inflamation. but they lower your blood sugar so you are hungary about every 3 hours
& you woll also have to piss about every 30min

after a few years on the steroids your  develop cataracts so be ready for that too eat lots of fiber the chemo will plug you up & make your terds rock hsrd


ask now for smething to help you sleep the sexamthazone steroid will prevent you from sleeping too

good luck to you shoot me an IM or email.
View Quote


The sterroids havent really effected me negatively like that in the past. but ive been off them for a year or more now so i guess im lucky there.  you're not lying about having to piss all the time thoguh. the chemo making terds rock hard is a problem but we have that currently under controll thank god. I may have to take you up on the needing something to sleep as i rarely get good sleep these days even when not on sterorids.  

thank you for the luck wishes .s. i wish the same for you.

Link Posted: 10/9/2020 9:21:05 PM EDT
[Last Edit: Gavachui] [#45]
get better at god's speed  game cock I have 5 more experimental gamma knife treatments at MUSC

I am close to done with the rad treatments  I  only have  chemo left no more radiation

 J am 42 now . Originally diagnosed with brain cancer at 32 one/fourth of my life has been spent fighting cancer I'm not winning anymore

I hope you get a surprise  decade t or two as well .  
we should meet up at California  Dreaming I'll buy you a beer & eat a  steak with you






my trench gun3 gun competition  shotty is done she needs range time any one willing to join me is welcome just IM or email me
Link Posted: 10/9/2020 10:02:46 PM EDT
[#46]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Gavachui:
get better at god's speed  game cock I have 5 more experimental gamma knife treatments at MUSC

I am close to done with the rad treatments  I  only have  chemo left no more radiation

 J am 42 now . Originally diagnosed with brain cancer at 32 one/fourth of my life has been spent fighting cancer I'm not winning anymore

I hope you get a surprise  decade t or two as well .  
we should meet up at California  Dreaming I'll buy you a beer & eat a  steak with you



https://scontent-atl3-1.xx.fbcdn.net/v/t1.15752-0/p280x280/121164315_303703957391540_3585447485926123302_n.jpg?_nc_cat=105&_nc_sid=ae9488&_nc_eui2=AeEwnDOkli5EWOGLtYzwK2KzxWmatuQwDBfFaZq25DAMF-BxChjNO-UIZ4aPBK3zKANvIVI3bmfB4zjJcSHbU2Jn&_nc_ohc=GsBiTL8HCrYAX-koceY&_nc_ht=scontent-atl3-1.xx&tp=6&oh=ffdf5e3d6d000d279217948d693f9767&oe=5FA5C00C


my trench gun3 gun competition  shotty is done she needs range time any one willing to join me is welcome just IM or email me
View Quote



Thank you sir and same to you.   congrats on being close to done with the radiation.  I've heard the gamma knife Is very cutting edge and can be quite good.. wow.. a quarter of your life fighting.. you are a warrior sir.. a serious ass kicking warrior.  I am sorry to hear you dont think you're winning still, but y ou are a hero in my eyes to have fought as long as you have.  I hope you continue to fight and get surprise benifits from your continued fight.  Thank you for the wishes of a surprise decade or two. I'll take any that i can get, as im sure you would as well.  it's the cards we've been dealt, and we got to play them the best we can.  As for the California Dreaming it sounds like a good plan to me.  Although due to my med regimin im not allowed beer anymore :(. which is a shame as i miss a good beer with a steak every so often.  but yes we should get to gether i would like that. maybe if we have another columbia meeitng of the arfcom group we could all meet up at that too?   Good looking trench gun end there.
Link Posted: 4/20/2021 8:46:33 PM EDT
[#47]
So yesterday i had a doctors appointment that i had thought would be fairly straigt forward... My Oncologist had set it up that i go visit a pulmanologist to see why i was feeling so out of breath and when i got there they took some deep vein blood to see what  the oxygen contant versus co/2 content is returning to my heart etc.  come to find out that i am having a very little return of o2 properly.   The doctor stated he wanted me to immediately go over to the hospital and be admitted through the emergency room.

After a little talk with the doctor and my father in law we decided to drive me to the ER and get admitted.  this saved us 800 or so dollars from having to be transported from 1 medical building to the ER via ambulance. sheesh..  Ive since been stuck here in the hospital.  the first night i was in the oldl tower building and wasnt getting much better. lthen today i evedientially took a turn for the worse and wasnt doing much better breathing so they put me ein an intensive care stepdown unit room N6130  which is the old north tower.  It is in better shape than the last room but not as good as the new towers.  I was asleep the entire time that they had done this, from last night through until about 420 pm today i didnt realize what was going on. I woke up around 420 to find emily here with me in the new room and me being hooked to a bipap machine.   the bipap machine evidentially is what permitted me to have as much oxygen exchanged as needed and made me feel better.  I hope that i will be released by this friday but the doctors are not that optimistic yet from what im hearing from the nurses.   Time will tell.  Thanks for anyones well wishes and concerns... li can only assume this is related to the cancer.
Link Posted: 4/21/2021 12:15:11 AM EDT
[#48]
I'm trying to listen to the doctors and do what they say. thee no oxygen/low oxygen levels really are no joke. i didnt realize how bad i was feeling until i woke up today from being asleep and on bipap machine for hours on end. the fact that they could move me foors and not be aware of it, much like me waking up without pants on and not knowin where that went / how tht happened blows my mind still.

They are limiting my fluid intake too, so i've had as m uch as theyll let me now which stinks, but i'll be ok. in the long run as long as my mouth doesnt dry out. Pulmanary has been by a few times today for breathing treatmnts too so i've had those as well but only remember having 2 of them. I think thatss about it. I'll try to keep updated here but no telling.

Link Posted: 4/21/2021 12:16:00 AM EDT
[Last Edit: GamecockOperator] [#49]
So it is day 3. I got up today around 9 am and emily was here thankfully.  I've had her here all day yesterday and today, but after 5 im lonely. I can only hope that i can continue to get better and get out of here as soon as possible. I think that the time restraint in visitation is the only reason that i am lonely is because they are keeping folks from coming to see me.  I konw that many of you have expressed prayers towards me and get well towards me, i appreciate that more than you know, I just wish we didnt have to live by these rules of the hospital where folks cant come up to visit after 5pm.
Anyways, overall i feel much better today and everyone says i look and sound much better.  From what the doctors have said so far i will be on a Tripap machine when i go home, for sleeping.  they said tome today that i had fluid on my lungs which was new to me,but between breathing treatments, sterorids, and the bipap overnight im getting better.  according to the pulmanologist i may be able to get home in a couple of days and that is something i wish for whole heartedly.
Today i also had 2 visitors besides emily and almost 4.  Thank you to my friend Mark for the book and coming by im sorry i was going through withdrawls when you were here but i am feeling much better now. Also thank you to my dear friend @D16man as well.  Without your suport and friendship i dont know where id be right now.  Also honorable mention to my brother Larry who did try to come up around 4 but some of you earlier guys didnt sign out so they wouldnt let him up with his younger child.  So if you do come to see me please be sure to sign out at the same place you came in at and signed in at.  
Alright i think thats bout it. I'll be here i think off and on till i sleep tonight. loney. ❤ to you all.
Link Posted: 4/22/2021 8:25:34 AM EDT
[#50]
Day 4 in the hospital, has had me awaken early compared to the other two days.  I have been woke by the repiratory therepist and taken off the cpap /bipap this morning.  all is looking well. I got up used the rest room, then came out.  As i was getting re-positioned back in bed, the Doctor from Pulmanary who i had seen in the office monday Dr. Marshall, came in to check me out.  he gave me very good and happy news.  He after evaluating me stateted that I can go home as soon as the cpap-bipap machine that they have ordered for me arrives and is able to be tested on me overnight to ensure that it feels well and sits right on me without issue.  This means that  if it gets here today i can go  home as early as tomorrow. He is having the Social worker try to call to have the device delivered to the hospital asap so i can move forward with this.  I'm very happy.  He did mention I may need oxygen but he's not sure at this time. After he came through his Physician Assistant Tonya  came by and re-itterated the same thing, so two confirmations means im not hallucinating LOL 🙂
So good things this morning. God is good, thank you for the prayers, for with them i do not know where i would be right now. Please keep the prayers coming and know that i appreciate everything.
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