Scared to death

momofmany

I just turned 44 years old, female, rarely drink and have never smoked. I have 4 children: Two adult sons who are out on their own, a 15 year old daughter who has Down syndrome, and a 10 year old son, newly adopted from Serbia who also has Down syndrome.

Back around October or so, as my husband and I were preparing for me to travel to Serbia to get our newly adopted son, I started having a sensation of a lump in my throat and problem with chronic throat clearing. It didnt hurt, just was uncomfortable. Tolerable, but definitely there. Then the week before I was supposed to leave, it REALLY hurt to swallow. Enough that it scared me.

I prayed. And prayed some more. If you've ever adopted internationally, you know that last week before you leave is INSANE! There was NO time for me to get to the doctor. After a couple of days, the pain went away. I was still clearing my throat, but it was slightly better. I'd decided I just developed a really bad habit.

The middle of December I came home with our new son. (a 10 year old boy...long story for another time, but he's amazing!) We spent the month of January getting his medical work-ups done, and he was diagnosed with a life threatening spinal malformation, and would need spinal fusion surgery (and a halo), but not before some other things were taken care of first. I was 100% focused on him, and my other daughter at home. A 14 year old who also has special needs. Meanwhile, ever bite of food was uncomfortable to swallow.

Finally in March the throat clearing was driving my husband insane. I have tubes in my ears and one had fallen out, so I went into my ENT. Could he fix that, and "Oh by the way, I'm having this problem...." He looked as far as he could with his scope (my vocal cords) and said the throat clearing is usually caused by reflux, and put me on Prevacid. He couldn't feel a lump, and my thyroid felt fine. GOOD! Because I'd self-diagnosed myself with thyroid cancer, and he had just ruled that out for me. Thanks doc!

Six weeks later there was still no change. The last week of April I had to take a trip back to Serbia and was gone for 10 days. My friends there really got on my about the throat clearing. It was constant. "Every 18 seconds!" my good friend said.

Four days after arriving home, we were headed out of state for my son's spinal fusion surgery. It's a rough surgery and he required round the clock care. When we came home one week later, he needed someone right with him at all times because he was so top heavy he tipped over all the time. I was busy. Still clearing my throat, but wasn't really noticing the lump in my throat anymore.

I just ignored everything. I justified time and time again why I didn't need to get to the doctor. Surely I was just imagining this.

A week ago I was in the shower and happened to *lightly* brush a mole on my nose which started bleeding. By Tuesday it was still bleeding so I set an appointment to go into my GP. There is a family history of Malignant Melanoma in my immediate family, and while this sure didn't look like MM, it still wasn't normal.

Thursday was appointment day. Nose looks like Basal cell (YES! Best skin cancer to have! Plastic surgeon removed it later that day and sent biopsy to the lab.) Then I told her about the lump in my throat, and she'd heard me clear my throat about 50 times by that point. She felt around. Thyroid felt normal, no nodules or anything. Lymph node under my jaw is enlarged. (I hadn't noticed that.) Then she had me swallow some water, and she could feel the lump. When she put even the slightest pressure on it when I swallowed, it HURT. She excused herself for a minute, then had a colleague come in to check it. He agreed he could feel a lump, which they thought was inside my esophagus and not related to my thyroid. They ran a thyroid panel anyway just to make sure, but also sent me off to GI to schedule an endoscopy. Thyroid panel came back well within normal limits.

That is NOT what was supposed to happen. They were supposed to tell me it was my thyroid. Take it out and get rid of the problem. Interestingly, my swallowing has gotten more uncomfortable in the past two days. I'm sure it's because I'm so hyper focused on it now. Well, except that it never hurt to swallow liquids before.

My endoscopy is scheduled for Tuesday. When I got out of the dr. appointment, having had a dime-size patch of skin removed from my nose, some blood work, and being told I had to have an endoscopy and why...I was kind of freaked out. Called my husband and he didn't pick up. Called my sister, no answer. I called my mom, who is four hours away.

Let me tell you, my mom lives 4 hours away but I only see her a couple times per year. She's a busy lady...a little too busy sometimes...she is often in my area but never stops. Too busy. (I have issues with this, can you tell?) My sister and I have long talks about this. Anyway, when I called my mom I was clearly shaken and upset. (she could tell, because there were times I couldn't talk because I was trying to catch my breath.) She called me back a couple hours later. She was going to rearrange her schedule to come down for the endoscopy.

I thought I was freaked out BEFORE, but now my mom...and nothing shakes my mom (nor me usually!) and she's dropping everything to come down. OMG! Now is not the time for her to go changing her ways. LOL

Please tell me I am imagining all of this. I'm just a hypochondriach, and they're going to come out of the endoscopy saying, "No clue what you're feeling, because there is NOTHING there! Perfectly normal!" At which time I will feel really stupid that my mom came down, husband took off work....and I posted HERE! Silly me.

Please tell me I'm crazy and there is nothing to worry about. Please?

birdiequeen

I think many of us would
I think many of us would agree the waiting is very hard. Not knowing is very hard. But Tuesday will be here soon. Take a deep breath and go bravely forward. This could be the oppertunity to mend fences with your Mom. Of course I cannot tell you it is nothing, but until you know, worrying will not help. I’m sure there are many, many scopes done each year that turn out to be nothing. It is good that you are getting it checked.
Take Care! Let us know how things turn out Tuesday.

birdiequeen

I think many of us would
I think many of us would agree the waiting is very hard. Not knowing is very hard. But Tuesday will be here soon. Take a deep breath and go bravely forward. This could be the oppertunity to mend fences with your Mom. Of course I cannot tell you it is nothing, but until you know, worrying will not help. I’m sure there are many, many scopes done each year that turn out to be nothing. It is good that you are getting it checked.
Take Care! Let us know how things turn out Tuesday.

dodger21

Try and stay calm
Hi momofmany,
I put my hat off to you for adopting a down syndrome child when you already have one. You seem like a very inspirational mum.

I'm 35, female, non smoker, non drinker and was diagnosed with Stage 0 adenocarcinoma EC in February. My grandmother also died from EC.

There are 2 main types of EC. Adenocarcinoma, which is generally found at the junction where the oesophagus meets the stomach, and is from years of reflux. Squamous cell carcinoma is generally higher up in the oesophagus and smoking and drinking can play a part in that type of cancer. I didn't have any lumps that could be felt. They found mine while trying to find out why I keep getting anaemia.

While it is worrying that your GP found a lump, please rest assured that you are doing the right thing having an endoscopy. If they do find EC you have found the best forum for advice and support, with people and care givers at all different stages on this forum.

However, the reason for my post is to calm you down a bit. Yes, we all get a bit nervous when we get our scans and scopes. But if that was me having another scan or scope on Tuesday, I would be telling myself that Tue is 3 days away and there is nothing that I could do to change what will happen, or the result, between now and then, so why not focus on my new son and make the most of the next few days. You can't change what will be happening on Tue. But the wondering 'what' and 'why' will hopefully be determined on Tue. While it is natural for all of us to feel apprehensive with a new test, go in there with an attitude of hopefully finally knowing what is the cause of the problem and, if it is some sort of cancer or cyst, knowing that you are going to fight it and be on top. Excessive stress will not be good for the rest of your body, let alone looking after your new son.

After you come out of anaestetic, you will be given a photo of the inside of your oesophagus and your GI doctor will generally be able to say, by sight, if it is EC, prior to the biopsies coming back.

So, stay strong and feel good that you will finally, hopefully, know a reason for your throat clearing soon. Then tell yourself that if it is something bad you will give it one hell of a fight. But don't pull your hair out stressing about the test for the next 3 days. The results are out of your control. Keep your stressing to things that you can control.

And please post back on this forum and let us know how you go.

Danielle

momofmany

dodger21 said:

Try and stay calm
Hi momofmany,
I put my hat off to you for adopting a down syndrome child when you already have one. You seem like a very inspirational mum.

I'm 35, female, non smoker, non drinker and was diagnosed with Stage 0 adenocarcinoma EC in February. My grandmother also died from EC.

There are 2 main types of EC. Adenocarcinoma, which is generally found at the junction where the oesophagus meets the stomach, and is from years of reflux. Squamous cell carcinoma is generally higher up in the oesophagus and smoking and drinking can play a part in that type of cancer. I didn't have any lumps that could be felt. They found mine while trying to find out why I keep getting anaemia.

While it is worrying that your GP found a lump, please rest assured that you are doing the right thing having an endoscopy. If they do find EC you have found the best forum for advice and support, with people and care givers at all different stages on this forum.

However, the reason for my post is to calm you down a bit. Yes, we all get a bit nervous when we get our scans and scopes. But if that was me having another scan or scope on Tuesday, I would be telling myself that Tue is 3 days away and there is nothing that I could do to change what will happen, or the result, between now and then, so why not focus on my new son and make the most of the next few days. You can't change what will be happening on Tue. But the wondering 'what' and 'why' will hopefully be determined on Tue. While it is natural for all of us to feel apprehensive with a new test, go in there with an attitude of hopefully finally knowing what is the cause of the problem and, if it is some sort of cancer or cyst, knowing that you are going to fight it and be on top. Excessive stress will not be good for the rest of your body, let alone looking after your new son.

After you come out of anaestetic, you will be given a photo of the inside of your oesophagus and your GI doctor will generally be able to say, by sight, if it is EC, prior to the biopsies coming back.

So, stay strong and feel good that you will finally, hopefully, know a reason for your throat clearing soon. Then tell yourself that if it is something bad you will give it one hell of a fight. But don't pull your hair out stressing about the test for the next 3 days. The results are out of your control. Keep your stressing to things that you can control.

And please post back on this forum and let us know how you go.

Danielle

Thank you
Thank you both for taking the time to reply.

Unfortunately I know anatomy and GI issues too well. My daughter had very severe reflux as an infant (She couldn't keep ANYTHING down, and at 11 months she weighed 11 lbs) She had a Nissen Fundoplycation and gtube done at 11 months. When she was 7 she started developing aspiration pneumonia. Time and time again. Finally during an endoscopy her GI discovered her esophagus would completely collapse when she was lying down. The aspiration was happening in her sleep when secretions would pool in her esophagus. About the same time she started having severe pain when swallowing solids, along with food lodging in her esophagus. We saw a Pediatric GI at Mayo and she was diagnosed with Cricopharyngeal Achalasia. (this is achalasia of the upper esophagus from a cricoid muscle that is too tight.) We were sent to Boston Children's (We live in Minnesota) to meet with a Ped. GI there who specializes in pediatric motility disorders. She had manometry done and was found to have no peristalsis, and the cricoid muscle was a mess. We had it dilated, but the benefits of that only lasted about 3 weeks. When we went back to the GI he told us if it only lasted that long, it's probably not going to work and she really needs a myotomy done. He will dilate it two more times and then we need to consider myotomy. My daughter has significant wound healing issues, so unless her pain becomes unbearable, surgery just isn't something we're willing to consider. She's had 23 major surgeries already.....sigh....So for now we give her ways to help the food get through her esophagus.

My son is still in his halo, and set to get it removed August 10th in Philadelphia (he is treated at Shriner's Hospital there.) We're SO ready to get it off! His entire torso is encased in lambs wool right now, and it's HOT HOT HOT here! Poor kid is miserable. Because we found his spinal problem right after we got him home, we've never even seen him run. He spent his first 8 1/2 years tied up in a crib in Serbian institution. (the institutions in Eastern Europe are HORRID!) so we're very anxious to get the thing off and get on with life. But in all that, we know his GI system is PERFECT! LOL

So, you can see why I haven't taken much time to take care of myself. Last night was one of the worst night's I've had. Lying down was really uncomfortable. I'm now focused on de-cluttering my house since my mom is coming, and dropping one kid off at camp today. I'll post as soon as I know something from the endoscopy. Thanks again!

Unknown

momofmany said:

Thank you
Thank you both for taking the time to reply.

Unfortunately I know anatomy and GI issues too well. My daughter had very severe reflux as an infant (She couldn't keep ANYTHING down, and at 11 months she weighed 11 lbs) She had a Nissen Fundoplycation and gtube done at 11 months. When she was 7 she started developing aspiration pneumonia. Time and time again. Finally during an endoscopy her GI discovered her esophagus would completely collapse when she was lying down. The aspiration was happening in her sleep when secretions would pool in her esophagus. About the same time she started having severe pain when swallowing solids, along with food lodging in her esophagus. We saw a Pediatric GI at Mayo and she was diagnosed with Cricopharyngeal Achalasia. (this is achalasia of the upper esophagus from a cricoid muscle that is too tight.) We were sent to Boston Children's (We live in Minnesota) to meet with a Ped. GI there who specializes in pediatric motility disorders. She had manometry done and was found to have no peristalsis, and the cricoid muscle was a mess. We had it dilated, but the benefits of that only lasted about 3 weeks. When we went back to the GI he told us if it only lasted that long, it's probably not going to work and she really needs a myotomy done. He will dilate it two more times and then we need to consider myotomy. My daughter has significant wound healing issues, so unless her pain becomes unbearable, surgery just isn't something we're willing to consider. She's had 23 major surgeries already.....sigh....So for now we give her ways to help the food get through her esophagus.

My son is still in his halo, and set to get it removed August 10th in Philadelphia (he is treated at Shriner's Hospital there.) We're SO ready to get it off! His entire torso is encased in lambs wool right now, and it's HOT HOT HOT here! Poor kid is miserable. Because we found his spinal problem right after we got him home, we've never even seen him run. He spent his first 8 1/2 years tied up in a crib in Serbian institution. (the institutions in Eastern Europe are HORRID!) so we're very anxious to get the thing off and get on with life. But in all that, we know his GI system is PERFECT! LOL

So, you can see why I haven't taken much time to take care of myself. Last night was one of the worst night's I've had. Lying down was really uncomfortable. I'm now focused on de-cluttering my house since my mom is coming, and dropping one kid off at camp today. I'll post as soon as I know something from the endoscopy. Thanks again!

This comment has been removed by the Moderator

Daisylin

unknown said:

This comment has been removed by the Moderator

super mom
I am so sorry to hear of your problems. I think you need to put yourself first, for once, and attend to your health issues. Hopefully you will be able to write us all back and say, "whew, false alarm", but if not, please know we will all be here for you with suggestions, support and prayers.
You are indeed a super mom! What a wonderful thing, to adopt a special needs child! You are a special person indeed. I work with these kids, so I do know your struggles and triumphs.
Please keep us posted, stay strong.
Chantal

sammy123

Dear Mom of Many and I can
Dear Mom of Many and I can never complain to you that is for sure. You are an awesome Mom BUT.....it is time for "you". There are many different reasons why you are experiencing these problems and we have these wonderful tests that give us information we need. Knowledge is Power and you are finally getting it done. With knowledge we gain control and our anxiety and fear is reduced. No matter what happens we are all here for you and thank God you eventually went to get help. You have your hands full with your family but please know that your family needs you to take care of yourself, physically, emotionally and spiritually FIRST. God Bless and keep us informed
xox

txeagle_54

bless you mom of many
worrying will do nothing more than make you miserable, I've been there. everyone here will do anything to help you through this I have seen that no question is too big or too small. keep comming back and let us know how we can help you . I am still pretty new here but these folks have made a profound difference how I look at things Ron