First and foremost, Chad's CT Results and Blood work all look good. That is the blessing of 2019 as far as his health is concerned. I assume we will have to see his oncologist in the New Year to see what the modified regiment is for prevention. I assume his CT Scans will be pushed back to once a year along with his colonscopy.
Chad had an appointment with the Nurse of the Neurosurgeon yesterday and I felt like I was in an episode of Grey's Anatomy. Anyone who watches knows that the surgeons on that show are very hungry to cut, cut, cut. Surgery is always the answer for them! This guy was very eager to get Chad to have surgery.
The MRI he had done two years ago is basically the same as it is now - but he let us know it's "bad". He's seen worse but this is bad. There's basically zero cartridge left between C4 and C5. There is a follow up appointment on January 14th with the actual neurosurgeon.
I have mixed emotions about the entire thing because Chad is not in pain every day like he was when we went to the doctor originally and also because Chad is a terrible patient. He does not recover well and every time they treat him for one thing, ten more things go wrong. So it worries me.
On the flip side, if this is going to get progressively worse, he needs to be proactive in preventing further deterioration and risking more sever consequences. He returns to work on January 6th, so he will have to find out what the deal will be with time off, etc., and then once we meet with the Surgeon on the 14th, we will know more.
For now, it's a waiting (and thinking) game. Ultimately, it will be his decision on what he is most comfortable with. Thank you for your prayers and love xo
Have a great 2020!
This is the story of Chad's fight against Appendix Cancer. On January 7, 2015 Chad found out just how special he was when he was told that not only did he have Cancer but it was extremely rare and very aggressive. Chad has always taken life by storm - so why stop now? Some may have crumpled and fell but the soldier in him took over and he decided then and there he had an infinite number of reasons to kick Cancer's ass. The road will never be easy but he will fight - and he will win.
Tuesday, December 31, 2019
Friday, December 13, 2019
Preliminary Results Are In on Friday the 13th.
Chad just received a written report from the Radiologist. We have not spoken to his doctor or his oncologist. There is some concerning stuff in the report that we don't necessarily understand but after comparing this report to several from his past and considering at the end of the report it said this...
We are cautiously OVER. THE. FUCKING. MOON and hopeful that this really does mean that he is ...
We are cautiously OVER. THE. FUCKING. MOON and hopeful that this really does mean that he is ...
!!! 5 YEARS CANCER FREE !!!
His actual surgery date when the cancer was officially removed was January 6, 2015. His big surgery in Baltimore with the appendix cancer specialist was March 2, 2015 so this celebration is 'technically' premature but this clear scan likely means he will now be pushed to annual scans instead of bi-annual :) So this scan was the big one and I am so beyond grateful that the news, thus far, looks promising!
You did it Chad! You made it over the hump! I am so proud of you for soldiering on despite the endless health problems and somehow still finding a reason to smile and enjoy life. Cheers to another 40 years cancer free!!
Wednesday, December 11, 2019
Scanxiety Begins....
It's been awhile since I've updated. That is because we have been in a holding pattern for ages.
Chad had approval for a bunch of tests for his stomach but due to a paperwork error when we went to that appointment, we couldn't see the doctor. They've supposedly fixed the paperwork now but we're still in a holding pattern waiting for an appointment.
Chad did receive bad news about his neck. There is further deterioration on his disc and they refused therapy so we go back to a Neurosurgeon on December 30th for a consult, likely more scans and I am sure they're going to suggest neck surgery of some capacity. :(
The Big One - CT Scan. Chad gets bi-annual CT Scans as a preventative measure for cancer. This will be his last CT Scan before the Five-Year mark for being cancer free. It's a big one. The one Chad has really been waiting for. Five years doesn't mean cancer free forever, but it's a big hurdle and one we're both anxious for him to get over. This will also move him to only having to have CT Scans once a year :) That CT Scan has just been scheduled for tomorrow. It is getting done locally (which is good) but that also means I am not sure when we will get the results (That is annoying) Previously, we would have to travel to Marion, IL to get the scan but we would also see his oncologist immediately after and he/she would read the scan and give us the preliminary results. But God willing the scan comes back clear and we get the results sooner than later.
As always, and maybe now more than ever - we could really use your prayers, positive vibes and good thoughts! <3 xoxo
Chad had approval for a bunch of tests for his stomach but due to a paperwork error when we went to that appointment, we couldn't see the doctor. They've supposedly fixed the paperwork now but we're still in a holding pattern waiting for an appointment.
Chad did receive bad news about his neck. There is further deterioration on his disc and they refused therapy so we go back to a Neurosurgeon on December 30th for a consult, likely more scans and I am sure they're going to suggest neck surgery of some capacity. :(
The Big One - CT Scan. Chad gets bi-annual CT Scans as a preventative measure for cancer. This will be his last CT Scan before the Five-Year mark for being cancer free. It's a big one. The one Chad has really been waiting for. Five years doesn't mean cancer free forever, but it's a big hurdle and one we're both anxious for him to get over. This will also move him to only having to have CT Scans once a year :) That CT Scan has just been scheduled for tomorrow. It is getting done locally (which is good) but that also means I am not sure when we will get the results (That is annoying) Previously, we would have to travel to Marion, IL to get the scan but we would also see his oncologist immediately after and he/she would read the scan and give us the preliminary results. But God willing the scan comes back clear and we get the results sooner than later.
As always, and maybe now more than ever - we could really use your prayers, positive vibes and good thoughts! <3 xoxo
Wednesday, September 4, 2019
Movement Again
Last weekend Chad went to the doctor a couple times due to flu like symptoms. It was a very rough weekend but he is doing better. It is still having flare ups, so if this is something viral - it's still working its way out of his systems but he is doing okay.
It's been since April since Chad has seen a doctor about his gastrointestinal problems. The last series of tests were as follows
December 2018 - A Gastroparesis Test. Normal results.
March 2019 - Colonoscopy. All clear.
March 2019 - Endoscopy. Barret's Esophagus diagnosis (didn't explain any of his issues, just another 'thing' to add to his list)
Today, we went back to Dr. Swain (General Surgeon who originally diagnosed Chad with appendix cancer), with a long list of approvals from the VA. Chad's current VA doctor seems to be more than willing to provide authorization for a multitude of tests that may or may not give us some answers as to the seemingly never-ending issues he has, with specifics to his digestion issues.
Brief Recap: Ever since Chad's surgery in March of 2015 he has had issues with digestion. Bloating, pain, cramping and for over a year now vomiting. His diet basically consists of Popsicles, chips and pizza because everything he tries to consume (even liquid) lead to an eventual episode of intense cramping and vomiting. Some weeks are better than others and while he cannot eat, he doesn't vomit every day. Other weeks, he is vomiting every other day and is just miserable.
Through discussions of the approved tests, the concept of SIBO (Small Intestinal bacterial overgrowth) has come up.
SIBO - Small intestinal bacterial overgrowth (SIBO) is a serious condition affecting the small intestine. It occurs when bacteria that normally grow in other parts of the gut start growing in the small intestine. That causes pain and diarrhea. It can also lead to malnutrition as the bacteria start to use up the body’s nutrients.
His next step is an appointment on September 9th. The name of the test eludes me but it will basically be some sort of test to see how liquid passes through his small intestine. The results of that will determine the next step.
Edit: The rest on September 9th is the following;
Small Bowel Follow Through. A Small Bowel Follow Through is an x-ray exam of your stomach and the upper section of the small intestine. To be able to see these structures on an x-ray they must be outlined with barium. Barium is a liquid that is swallowed and appears white on a x-ray picture.
We also have a consult in November with Dr. Green/Finch who can handle more of the other types of tests that the VA has approved. We're hoping to get in sooner than Novermber though, so I'll keep you posted,
As for right now - same stuff, different day. But at least the ball is moving again ..................
It's been since April since Chad has seen a doctor about his gastrointestinal problems. The last series of tests were as follows
December 2018 - A Gastroparesis Test. Normal results.
March 2019 - Colonoscopy. All clear.
March 2019 - Endoscopy. Barret's Esophagus diagnosis (didn't explain any of his issues, just another 'thing' to add to his list)
Today, we went back to Dr. Swain (General Surgeon who originally diagnosed Chad with appendix cancer), with a long list of approvals from the VA. Chad's current VA doctor seems to be more than willing to provide authorization for a multitude of tests that may or may not give us some answers as to the seemingly never-ending issues he has, with specifics to his digestion issues.
Brief Recap: Ever since Chad's surgery in March of 2015 he has had issues with digestion. Bloating, pain, cramping and for over a year now vomiting. His diet basically consists of Popsicles, chips and pizza because everything he tries to consume (even liquid) lead to an eventual episode of intense cramping and vomiting. Some weeks are better than others and while he cannot eat, he doesn't vomit every day. Other weeks, he is vomiting every other day and is just miserable.
Through discussions of the approved tests, the concept of SIBO (Small Intestinal bacterial overgrowth) has come up.
SIBO - Small intestinal bacterial overgrowth (SIBO) is a serious condition affecting the small intestine. It occurs when bacteria that normally grow in other parts of the gut start growing in the small intestine. That causes pain and diarrhea. It can also lead to malnutrition as the bacteria start to use up the body’s nutrients.
- pain in the stomach, especially after eating
- bloating
- cramps
- diarrhea
- constipation
- indigestion
- regular feeling of fullness
- gas
His next step is an appointment on September 9th. The name of the test eludes me but it will basically be some sort of test to see how liquid passes through his small intestine. The results of that will determine the next step.
Edit: The rest on September 9th is the following;
Small Bowel Follow Through. A Small Bowel Follow Through is an x-ray exam of your stomach and the upper section of the small intestine. To be able to see these structures on an x-ray they must be outlined with barium. Barium is a liquid that is swallowed and appears white on a x-ray picture.
We also have a consult in November with Dr. Green/Finch who can handle more of the other types of tests that the VA has approved. We're hoping to get in sooner than Novermber though, so I'll keep you posted,
As for right now - same stuff, different day. But at least the ball is moving again ..................
Thursday, August 1, 2019
A Brief Update
I have not posted for awhile - no news is good news, right?
Usually. It's also very frustrating because regardless of tests, scans, blood work - no one seems to know or is all that inclined to find out exactly what is wrong with Chad.
So basically this is where we are at.
He was diagnosed with severe sleep apnea and now has one of those machines, which is not doing much for him at all except making his throat raw and sinus stuffed up. Though, when he does wear it, he doesn't snore which is GREAT for ME! :D
He still cramps, he still vomits, he still can barely eat. He is tired all the time. He had a CT Scan a week ago but we still haven't heard the results of that and I can't find out because it was done locally instead of at the VA In Marion (where they post the results online).
Edit: Apparently Chad had already gotten the results and didn't tell me lol They're all clear. which is of course - AWESOME NEWS!
Chad is also very paranoid and this part is heart breaking and frustrating for his loved ones (me). Ever since he got cancer, every ache and pain - everytime he feels something is 'off', it really messes with his emotional and mental status. I wish he would see a therapist but he refuses so we just walk through life almost waiting for the next shit storm. It's no way to live and my heart breaks for him that he never gets a break from this :(
With that said, he is still doing well. He never gives up, works hard and pushes through all the pain and discomfort. He truly is a soldier by every definition of the word. xo
Usually. It's also very frustrating because regardless of tests, scans, blood work - no one seems to know or is all that inclined to find out exactly what is wrong with Chad.
So basically this is where we are at.
He was diagnosed with severe sleep apnea and now has one of those machines, which is not doing much for him at all except making his throat raw and sinus stuffed up. Though, when he does wear it, he doesn't snore which is GREAT for ME! :D
He still cramps, he still vomits, he still can barely eat. He is tired all the time. He had a CT Scan a week ago but we still haven't heard the results of that and I can't find out because it was done locally instead of at the VA In Marion (where they post the results online).
Edit: Apparently Chad had already gotten the results and didn't tell me lol They're all clear. which is of course - AWESOME NEWS!
Chad is also very paranoid and this part is heart breaking and frustrating for his loved ones (me). Ever since he got cancer, every ache and pain - everytime he feels something is 'off', it really messes with his emotional and mental status. I wish he would see a therapist but he refuses so we just walk through life almost waiting for the next shit storm. It's no way to live and my heart breaks for him that he never gets a break from this :(
With that said, he is still doing well. He never gives up, works hard and pushes through all the pain and discomfort. He truly is a soldier by every definition of the word. xo
Friday, April 26, 2019
Validation Is Something ...
For those who have followed Chad's journey, you know he's had a hell of a time with various issues. We are no closer to figuring out his digestion stuff and he started vomiting again more frequently for a little while there. I am not sure what the next step is here.
Yesterday we went to Marion IL where he had an MRI done on his knee to try and see what is wrong there. The earlier X-Ray showed some areas of concern so the MRI was the next step. We should have results for that in a few days.
In Other News: Chad also has on-going issues with his neck and arms/hands. He's already avoided surgery because his C4 and C5 discs are shot. That was largely affecting the left side of his body. He avoided surgery by getting pain management shots and has been doing okay there for the past 2-3 years. Now his left side is bad. The doctor we went to originally (I think I complained about him last time) did absolutely nothing for him. Basically told him he had Tennis elbow.
Chad had a nerve conduction study done yesterday and that doctor determined he does in fact have issues in his C6 and C7 now. He will recommend oral steroids to see if that helps and new imaging (MRI) If the steroids do not help, then he will recommend actual pain management. I expressed my concern with his referring us back to that doctor because he has been completely useless thus far. Not surprisingly, this doctor did not have a high opinion of the Pain Management doctor either. He said he thinks he works for the VA just so he can say he works for the VA. So God willing, if Chad does require actual pain management, we should get a referral to someone outside the VA.
So while the news isn't awesome, it is validation (finally) that there is something wrong and we have a few options on how to proceed to treat it. This doctor visit was the first, in a long time, that we left with a little bit of hope that maybe at least ONE thing can find some improvement.
When I know more, I'll keep you posted xo
Yesterday we went to Marion IL where he had an MRI done on his knee to try and see what is wrong there. The earlier X-Ray showed some areas of concern so the MRI was the next step. We should have results for that in a few days.
In Other News: Chad also has on-going issues with his neck and arms/hands. He's already avoided surgery because his C4 and C5 discs are shot. That was largely affecting the left side of his body. He avoided surgery by getting pain management shots and has been doing okay there for the past 2-3 years. Now his left side is bad. The doctor we went to originally (I think I complained about him last time) did absolutely nothing for him. Basically told him he had Tennis elbow.
Chad had a nerve conduction study done yesterday and that doctor determined he does in fact have issues in his C6 and C7 now. He will recommend oral steroids to see if that helps and new imaging (MRI) If the steroids do not help, then he will recommend actual pain management. I expressed my concern with his referring us back to that doctor because he has been completely useless thus far. Not surprisingly, this doctor did not have a high opinion of the Pain Management doctor either. He said he thinks he works for the VA just so he can say he works for the VA. So God willing, if Chad does require actual pain management, we should get a referral to someone outside the VA.
So while the news isn't awesome, it is validation (finally) that there is something wrong and we have a few options on how to proceed to treat it. This doctor visit was the first, in a long time, that we left with a little bit of hope that maybe at least ONE thing can find some improvement.
When I know more, I'll keep you posted xo
Tuesday, April 2, 2019
Biopsy Results
Chad got a (very uninformative) call from the doctor today. Brief re-cap. During his endoscopy, Mr Finch (Gastroenterologist) discovered what he thought to be Barrett's Esophagus. It was my understanding they were sending that away to determine at what stage it was to determine follow-up care.
Options:
The doctor's office called today to report that Chad did test positive for Barret's Esophagus (Boo - but expected). They also reported that it was benign for cancer. (Great News!!) That's all I know and since they called Chad, he didn't ask any further questions. They never mentioned a treatment plan or anything either. I know there isn't much to do for treatment other than monitoring it and reducing acid reflux, which Chad does anyways with his various medications and removal of gallbladder, etc.,
I put a call in with the office. Once they get back to me, I will update this post. x
Thanks for your love and support <3
Post Update: The doctor's office has phoned me back and confirmed there is no dysplasia. His esophagus presents features of Barret's Esophagus but there are no precancerous changes. We will continue to control his GERD and follow-up with routine endoscopies! This is our best case scenario with a confirmed diagnosis. Thank God and this beloved Universe <3
Options:
- No dysplasia, if Barrett's esophagus is present but no precancerous changes are found in the cells.
- Low-grade dysplasia, if cells show small signs of precancerous changes.
- High-grade dysplasia, if cells show many changes. High-grade dysplasia is thought to be the final step before cells change into esophageal cancer.
The doctor's office called today to report that Chad did test positive for Barret's Esophagus (Boo - but expected). They also reported that it was benign for cancer. (Great News!!) That's all I know and since they called Chad, he didn't ask any further questions. They never mentioned a treatment plan or anything either. I know there isn't much to do for treatment other than monitoring it and reducing acid reflux, which Chad does anyways with his various medications and removal of gallbladder, etc.,
I put a call in with the office. Once they get back to me, I will update this post. x
Thanks for your love and support <3
Post Update: The doctor's office has phoned me back and confirmed there is no dysplasia. His esophagus presents features of Barret's Esophagus but there are no precancerous changes. We will continue to control his GERD and follow-up with routine endoscopies! This is our best case scenario with a confirmed diagnosis. Thank God and this beloved Universe <3
Tuesday, March 26, 2019
One Step Forward, Two Behind.
The never ending saga of Chad's health continues down a familiar path.
Brief Recap: Ever since Chad's big surgery to remove the cancer, Chad has had on-going issues with pain and digestion. For the better part of a year or more, it's gotten to the point where he can barely eat a meal without cramping and pain to the point where he was vomiting sometimes, several times a day. It is not as sever now but he still experiences all of the same issues.
As part of the treatment plan they ordered him to have a Colonoscopy and an Endoscopy.
Colonoscopy - This was clear. Not even a polyp, which is fantastic news. When he had his colonoscopy pre-surgery in 2015 he had several and some were pre-cancerous. Since they're removal he has not had a single one, so prayers are answered there.
Endoscopy - Not so great but verdict is still out on what is going on. Chad has now been diagnosed with Barrett's Esophagus which is basically a disease of his esophagus where the tissue presents with irregular cell growth/formation. The tissue has been biopsied and we should have the results within a week or so. The reason why this sucks is because this disease increases the risk of developing esophageal adenocarcinoma, which is cancer of the esophagus. Our best case scenario here is that he has low-grade or very little abnormal cells which will only require monitoring via Endoscopy every three years. Only 1% of patients with Barrett's Esophagus get cancer of the esophagus so we're praying Chad is of the other 99% and leaves this rare cancer for the birds. One rare cancer per life-time is enough :) The doctor did not seem overly concerned so God willing, everything goes fine there. The gastroenterologist who performed his scopes does seem to believe that all of Chad's issues are related to blockages, likely in the small intestine. So the next step will be to follow-up with the General surgeon and see what they want to try next.
Knee - My husband is no stranger to medical issues :) His knee that he broke just over a year ago is giving him some trouble. He had an X-Ray done today and it showed some areas of concern so his doctor is now ordering an MRI to investigate that further.
Neck - His Neck that gave him trouble four years ago is getting bad again but this time on the left side. We went to a Pain Management consult today and that was a waste of valuable time and mine. The Pain Management doctor at the VA Hospital in Marion, IL is a clown and shows zero concern or care for the welfare of his patients. He literally offered absolutely zero of anything other than a sleeve for Chad's elbow. I can't even talk about this, I get so irritated. We're going to try a different route and ask to see the Neurosurgeon again (Dr. Hall) who helped Chad previously because when you stay within the VA Health Care system you're treated as sheeps and if anyone knows me, I do not fare well be carted around.
Anyways - so mostly good news. A little blimp on the radar which we're are praying remains tiny and insignifigant. Aside from that - still no answers. Just more questions - which is representitive of life I guess.
Thank you everyone for your never ending love and support! <3
Brief Recap: Ever since Chad's big surgery to remove the cancer, Chad has had on-going issues with pain and digestion. For the better part of a year or more, it's gotten to the point where he can barely eat a meal without cramping and pain to the point where he was vomiting sometimes, several times a day. It is not as sever now but he still experiences all of the same issues.
As part of the treatment plan they ordered him to have a Colonoscopy and an Endoscopy.
Colonoscopy - This was clear. Not even a polyp, which is fantastic news. When he had his colonoscopy pre-surgery in 2015 he had several and some were pre-cancerous. Since they're removal he has not had a single one, so prayers are answered there.
Endoscopy - Not so great but verdict is still out on what is going on. Chad has now been diagnosed with Barrett's Esophagus which is basically a disease of his esophagus where the tissue presents with irregular cell growth/formation. The tissue has been biopsied and we should have the results within a week or so. The reason why this sucks is because this disease increases the risk of developing esophageal adenocarcinoma, which is cancer of the esophagus. Our best case scenario here is that he has low-grade or very little abnormal cells which will only require monitoring via Endoscopy every three years. Only 1% of patients with Barrett's Esophagus get cancer of the esophagus so we're praying Chad is of the other 99% and leaves this rare cancer for the birds. One rare cancer per life-time is enough :) The doctor did not seem overly concerned so God willing, everything goes fine there. The gastroenterologist who performed his scopes does seem to believe that all of Chad's issues are related to blockages, likely in the small intestine. So the next step will be to follow-up with the General surgeon and see what they want to try next.
Knee - My husband is no stranger to medical issues :) His knee that he broke just over a year ago is giving him some trouble. He had an X-Ray done today and it showed some areas of concern so his doctor is now ordering an MRI to investigate that further.
Neck - His Neck that gave him trouble four years ago is getting bad again but this time on the left side. We went to a Pain Management consult today and that was a waste of valuable time and mine. The Pain Management doctor at the VA Hospital in Marion, IL is a clown and shows zero concern or care for the welfare of his patients. He literally offered absolutely zero of anything other than a sleeve for Chad's elbow. I can't even talk about this, I get so irritated. We're going to try a different route and ask to see the Neurosurgeon again (Dr. Hall) who helped Chad previously because when you stay within the VA Health Care system you're treated as sheeps and if anyone knows me, I do not fare well be carted around.
Anyways - so mostly good news. A little blimp on the radar which we're are praying remains tiny and insignifigant. Aside from that - still no answers. Just more questions - which is representitive of life I guess.
Thank you everyone for your never ending love and support! <3
Wednesday, March 13, 2019
Quick Update - Same Ole'
I have been meaning to post for awhile but life is distracting. I wish I had something different to say but unfortunately life is much of the same. Chad still gets sick when he eats. He is still cramping and vomiting 3-5 times a week. Some days are better than others. His previous test rendered no results but this is also nothing new. It blows my mind they can fly someone to moon or replace an entire heart but no one seems to have a clue about what could be wrong with my husband.
With THAT said. Chad is trying harder than ever to enjoy life and embrace each moment. Sometimes I don't know how he has a smile on his face at all. When my back goes out or I get sick I am miserable, and it only lasts a few days. To consider he has literally lived with this for years and years - it's mind blowing. All I can do is continue to pray and hope he has more good days than bad.
His neck and back are giving him trouble again and his knee has not been well.
March 24 - He will have both a colonoscopy and an endoscopy
March 25 - We will be going to Marion for an X-Ray and Pain Management Consult.
I will post when I get more news :)
As always, thank you for your love, support and prayers!
xoxo
With THAT said. Chad is trying harder than ever to enjoy life and embrace each moment. Sometimes I don't know how he has a smile on his face at all. When my back goes out or I get sick I am miserable, and it only lasts a few days. To consider he has literally lived with this for years and years - it's mind blowing. All I can do is continue to pray and hope he has more good days than bad.
His neck and back are giving him trouble again and his knee has not been well.
March 24 - He will have both a colonoscopy and an endoscopy
March 25 - We will be going to Marion for an X-Ray and Pain Management Consult.
I will post when I get more news :)
As always, thank you for your love, support and prayers!
xoxo
Subscribe to:
Posts (Atom)