Arlo Needs An Entire Body Transplant!

[Arlo Kalon 2.0]

I'm rather reluctant to post this update since I stirred up so much concern here, but my scan came back normal. That should be good news, except from past experience I know they are missing something. 22 years ago I had a nuclear scan of intestines after passing a quantity of blood. It too came back normal. 5 days later I was in the er with massive internal bleeding and was later told I had lost nearly half the blood in my body. It was funny because when they called me today I told them I had been laying on my side for the past 2 hours because of the pain. I see my doc in a week and we'll decide then what to do next. I played in an orchestra for 14 years with a doctor who played drums. We became quite good friends. His practice is totally in a hospital setting. He told me once those big expensive scanning machines are quite unreliable and often give them results that he said amounts to "chasing red herrings". Not very reassuring is it? I wake up every night between 3-4am from pain and lay down every afternoon on my side because of it. I wish I could get a concrete answer like John Deaton did as to what's up. Guess I'll have to be patient awhile longer!

 

[Gino]

It's never an easy battle and always feels like it's an uphill one at best.

Since it's looking better for ya, I'll tell ya this one now.

Good friend of mine was just diagnosed with stomach and small intestine cancer around the 16th of November. He was scheduled to have his complete stomach and portion of his intestines removed..... entirely on the 20th. They were gonna form a new stomach out of his remaining small colon and was gonna have fierce restrictions as to what he'd be able to eat. Well, I talked to him this morning and noticed his voice was much deeper and kinda gravel-ly. Turned out they did a few more tests and studied the X-rays some more and decided a huge barrage of Chemo and radiation would be a better route and then they wouldn't have to remove as much. He will still have his stomach, so he'll be able to eat most of what he wants. His voice, I presume, was deeper due to the medication and radiation doses. He's like a little kid and actually looking forward to his medicine.

So, I guess what I'm saying is.... like you, he got much better news than he originally got and is much happier about everything.

Don't ever feel embarrassed or reluctant to post good news.... here or anywhere. This is a time for celebration and dancing in the streets. Well, with your pain levels, just feel good about things in general and forget about dancing for awhile.

Keep up the good work........... ​

 

[petrosgraphics]

arlo,

keep pressing forward... 7 years ago i was diagnosed with rectal cancer..docs.
gave me a 5-10% chance.. had chemo and radiation at the same time, all in (hurry-up mode)... 4 months later had surgery with the understanding i would have a bag for the
rest of my life, how ever long that would be....every 3 months following that period
i would go in for a PET scan....4.5 years ago was diagnosed with liver cancer...surgery
and a little chemo following......just had my last scan... everyone pleased with where i am at...... long and short of it.... they put humpty dumpty together again.... i have no
bag, liver regenerated itself, and i am almost 5 years out, cancer free....

do what you need to do...... fight hard...... god bless........

 

[Arlo Kalon 2.0]

arlo,

keep pressing forward... 7 years ago i was diagnosed with rectal cancer..docs.
gave me a 5-10% chance.. had chemo and radiation at the same time, all in (hurry-up mode)... 4 months later had surgery with the understanding i would have a bag for the
rest of my life, how ever long that would be....every 3 months following that period
i would go in for a PET scan....4.5 years ago was diagnosed with liver cancer...surgery
and a little chemo following......just had my last scan... everyone pleased with where i am at...... long and short of it.... they put humpty dumpty together again.... i have no
bag, liver regenerated itself, and i am almost 5 years out, cancer free....

do what you need to do...... fight hard...... god bless........

AWESOME! and, this proves what I usually say when I start these whines, "I KNOW there are people worse off than me". I lucked out when they found cancer in my appendix during first surgery, I didn't have to do chemo. The only reason I would opt out of any further surgeries is the horrible complications I always have now, the last of which kept me in the hospital nearly 6 months. I liken that to 5 years in jail. I'm so glad you got to skip the bag. It's a miserable existence. I had one for almost a year before I got the fistulas cut out of my belly.

 

[fmg]

Good luck and stay strong

 

[Arlo Kalon 2.0]

It's never an easy battle and always feels like it's an uphill one at best.

Since it's looking better for ya, I'll tell ya this one now.

Good friend of mine was just diagnosed with stomach and small intestine cancer around the 16th of November. He was scheduled to have his complete stomach and portion of his intestines removed..... entirely on the 20th. They were gonna form a new stomach out of his remaining small colon and was gonna have fierce restrictions as to what he'd be able to eat. Well, I talked to him this morning and noticed his voice was much deeper and kinda gravel-ly. Turned out they did a few more tests and studied the X-rays some more and decided a huge barrage of Chemo and radiation would be a better route and then they wouldn't have to remove as much. He will still have his stomach, so he'll be able to eat most of what he wants. His voice, I presume, was deeper due to the medication and radiation doses. He's like a little kid and actually looking forward to his medicine.

So, I guess what I'm saying is.... like you, he got much better news than he originally got and is much happier about everything.

Don't ever feel embarrassed or reluctant to post good news.... here or anywhere. This is a time for celebration and dancing in the streets. Well, with your pain levels, just feel good about things in general and forget about dancing for awhile.

Keep up the good work........... ​

Thanks for keeping this under your hat for awhile! I've lost 7 feet of intestine so far but still function completely normal. I have a friend who had very similar surgery to what your buddy almost had. He has no large intestine anymore and is the most miserable human being I know. I was headed for a complete colon removal as well with my first surgery, but lucked out when they found the source of the bleeding to be a ruptured birth defect on my small intestine. People with no colon become walking skeletons and crave salt to the extent that they have to take salt horse pills. I'm actually pretty lucky for the things I SHOULD have had done but escaped having. A year with no food and wearing a bag on my belly because of draining fistulas was a horrendous experience. I looked like death warmed over when I was finally sent home from the hospital. I dropped in on the ward where I was for 6 months awhile back to ask if they had any patients with fistulas I could talk to, encourage, and give hope with my recovery. There were 3 nurses there who remembered me... they just kept looking at me saying "oh my god" over and over. They thought I went home to die. They said nobody was in the hall in the same shape I was but took my card and promised to call me if one ever was. They said it's a violation of privacy laws though, but they said they'd ask anyone who came in with abdominal fistulas if they'd like to have me visit. I'd sure like to talk to someone in the condition I was in and let them see total recovery is possible with a surgeon brave enough to take you on. It took me 6 months to find one and I had to go to Dallas to do it (from Ft. Worth).

 

[Steve C.]

Just seeing this for the first time. Wow. Praying for the best painless and fast
recovery. I saw the facebook post a week or so ago that you were in pain and
going for more check ups. Never heard any more. If I can do anything,
just call.

 

[Jillbeans]

I'm sorry to hear that you are in so much pain and are going through this again after finally getting better.
You are in my thoughts.
Love....Jill

 

[Tony Teveris]

Your in my thoughts every day, keep pushing ahead, you have done it in the past.

 

[Arlo Kalon 2.0]

Your in my thoughts every day, keep pushing ahead, you have done it in the past.

Pushing ahead has become a default way of life for me. I was dumbfounded to be told my scan results were normal. I knew beyond a doubt I was going to be told I had kidney cancer based on my symptoms and that of a close friend who died of the disease. Of course, I'm ecstatic it hasn't come to that... yet. I can't sleep through the night without being awakened by a burning pain in my side I can only get a few hours relief from with a very small narcotic dosage. The ultrasound showed a 2" diameter mass on my right kidney, but the CT scan came back normal. My friend who is a doctor said scans with radioactive contrast are notorious for missing things and I've already had devastating consequences from experiencing that. I don't have any idea what my doctor will want to do next. I just know I am not going to start increasing narcotic dosages to chase relief. Something definitive has to occur soon though because this pain is driving me crazy. I almost feel like I'm back in the hospital with as many times a day as I have to lay on my side and get totally still to momentarily stop hurting. It's beginning to suck big time and I'm very tired of it. I'm just thankful everyone tolerates my venting here.

 

[Deaton Design]

Arlo, my little bump in the road is no comparison to what you are going through. It has changed my life quite a bit as far as what I can eat, but its also got me on the right track. I can only hope that you find out soon whats going on, and that it isnt anything that cant be fixed. I offer my prayers and good thoughts to you and look forward to you being around for a long time.God Bless you.

 

[threeputt]

Hang in, Arlo. I really feel for you and your family. Good thoughts going your way.

I liked your comment about your "legacy". Spot on, guy!

I think more and more about this same idea as I near the winter of my life.

Take good care and find peace.

 

[SD&F]

Arlo,
I just saw this and I am so sorry for the trials you are and have been enduring. I was diagnosed with Microbactirium Avium Tuberculosis earlier this year. I had been in the hospital 3 times this year for major surgeries(I should weigh 15 lbs less)coulnot believe that they missed this in all the test I was having done. I have been on some really strong meds that are kicking my butt and making me extremely ill. I have a minimum of a year of treatment and thankful that it was not cancer when it was diagnosed. I'm so sorry for jumpng in on your venting, but you are a much braver and tougher person than I am and I pray that you find out what is causing you the pain and that it is something that can be easily treated and allow you some well needed rest and comfort. BTW you should be able to vent on here....everyone else does and you deserve support.

 

[Arlo Kalon 2.0]

Here is what should be final update on this latest development. The nurse who told me the CT scan was normal was only answering my question about my kidney. My excellent doctor of nearly 30 years now filled me in on the rest of the results. After 18 major surgeries, I have experienced extensive scarring of the bottom third of both lungs from fluid buildup caused by up to several months of laying in bed all day. On my right lung, the scarring has "exited the lung" in my doc's words and is sticking to surrounding tissue. The extreme pain I am experiencing is to be expected from this situation and there is no treatment for it, aside from ever increasing dosages of narcotics, which I vowed not to pursue again in my lifetime. I simply have to develop even more mental toughness to endure the pain and have already made up my mind to do so. The only true handicap this health phenomenon has left me with is greatly diminished breath capabilities over what I used to have to sing with. You can find two examples of this on my Facebook home page when you locate the two videos I posted of me playing my guitar and singing. Facebook utilizes my real name of David Kellems and I'm the one in Fort Worth, Texas. I don't wanna hear any complaints about ears bleeding, I warned you I can't sing anymore!

 

[Marlene]

it isn't the kidney which is good. sorry to hear that you are in pain and there isn't much they can do for it. I an understand you not wanting to go the narcotic route again, is there a non-narcotic of any kind that might help?

 

[Gino]

So, when was it that you could sing ?? 16 surgeries ago or 3 ??

If ya can't sing, then don't. Save you air for blowing out candles on your birthday cake. At 59 coming up.... you're gonna have to save up a lota air.

Not trying to be rude, but rather than always finding the negative, be glad this whole ordeal isn't what you started this thread about. Count your lucky stars and be glad you're still breathing, even if it does hurt and don't need any surgeries at the moment.

 

[SD&F]

It seems the battle has been long and that your opponents relentless. Keep up the good fight and do what you must do to survive. Try to enjoy when you can and know that everyone here has you in their thoughts.

 

[deegrafix]

Arlo, I'm so sorry to hear what you've been and are going through. What a heavy load to bear, and you are doing it very well. I hope you can get some relief from the pain. My thoughts are with you.

 

[Signguyno1]

Again, Prayers are in for you from us..

 

[VolunteerSign]

I got sent via lifeflight to the hospital last Sunday night....silly heart attacks sheesh. And i couldn't sing when they released me....but then I couldn't sing when the loaded me up either . You are like myself, you come from an era where you don't think about it, ya just go on. Like was said earlier...save your breath for birthday candles my friend...a bunch of the them are for sure coming your way.