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Topic Swallowing assessment Go to previous topic Go to next topic Go to higher level

By Lynnie2 On 2014.10.29 13:36
My husband has had a cough for the past 4 months and the MDS recommended a swallowing assessment. He had it yesterday at the hospital.
I'll try to explain the assessment. She checked different things when he swallowed solids and liquids and did different things to see if he had control of his tongue and volume of his voice.and several other things. It's hard to explain everything.
He didn't seem to have much problem eating but she explained later in her evaluation.

The reason he may have more salvia built up and coughing is because he doesn't swallow as much as he should.
We do that automatically about once per minute, but with Parkinson's it doesn't always happen that way.
She encouraged him to try to consciously remember to swallow more and that way he would get rid of more salvia.

Also when eating food or drinking, the food goes down the throat and a valve closes so it won't go down the air tubes. This normally happens in healthy people.
In Parkinson's the food sometimes aspires or material falls below the vocal folds as opposed to penetration when the material enters the airway but stays above the vocal folds.

People with Parkinson's don't have as much control over this so that is why they are choking.

When we eat solid food we usually have no problem with it going down and liquid goes down okay, but when we eat soup or fruit, with solids and liquid together, the liquid could go down first while you are still chewing the food, and then goes below the vocal folds or airway and cause the choking.
If the food isn't getting away and staying in a area in the throat then it could build up bacteria and eventually cause infection and get in the lungs causing pneumonia. We don't want this to happen.
She can't say that this is happening with him for sure as it's only a speculation in her assessment through the visual signs, but she said it could happen. To make sure further tests/x-rays would be advantageous.

She is recommending a Fiber endoscopic evaluation of swallowing (FEES), which is a tube that goes down the throat and I think there is a camera too. She also recommended a modified barium swallow study (MBS) X-ray Study.
Well have to wait until the MDS sets something up at another hospital as our local hosp. doesn't have the machines.

We also talked about his speech and realizes he is having problems and she said she could see him about that. She could give him some exercises to improve the volume and breathing. She can't really do anything about communicating the words (he has difficulty finding words) but hopefully this will help him in some way and I think it better than doing nothing.
We have our first appointment next week.

By LOHENGR1N On 2014.10.29 14:15
Lynnie, as a word of caution please make sure that the medical staff involved is aware of the risks and problems we PWP encounter when general antestics are used and that revelation s from such a procedure will outweigh those risks. I mean if all it will do is confirm what is happening and not offer a solution then are the risks personally worth it to the patient? Just because a "new toy" is available it poses more risk for the Parkinson's community and that risk has to be considered.

By Lynnie2 On 2014.10.29 14:36
What do you mean exactly.

What could happen with these tests.
Have you ever had one?

By LOHENGR1N On 2014.10.29 16:06
Lynnie, What I mean is that the Parkinson's Brain does not do well under anesthesia. We have a hard time recovering from it's effects. One can take weeks or months before We're out from under the cloudy effects. Some don't recover to pre-opt cognitive levels. So if they do an endoscopic procedure you should be sure that the fact of complications is very real and the Doctors are very aware of it.

Secondly if this test is to determine food is getting stuck in the folds of the throat. What would be done? Is there something that they could do to correct it? By that I mean an operation? If all they would do is recommend exercises to try to correct it is the endoscopic incursion worth the risks to the patient? Much of the testing done now is considered routine by Doctors. but having a disease like Parkinson's Disease changes all of this routine testing.

No I have never had one of these tests. But I will tell you something that happened to me, a couple of years ago I had to switch primary care doctors. Mine retired so I slid over to one of his partners. At our first meeting he said I see you've never had a colonastipy (sp) I said no. He said he'd had a couple and there was nothing to it did I want to schedule one? No I told him about anesthesia and our P.D. brains and also that way back when my problems started my pcp thought it was essential tremor and put me on Inderal L.A. a couple months later my Neurologist diagnosed Parkinson's Disease, but said the Inderal was used to treat tremor so left me on it. With this medicine one should not go under anesthesia. Stated in the effects of the medicine and cautions it say's one should be withdrawn from this drug before and surgery or procedures because there is a good chance that one will not come out from under the effects of anesthesia. To which he like his recently retired partner pulled out a tablet looked it up and said huh, you're right. That ended that suggestion. So after all this I'm just saying to be aware of the risks to your loved one and weigh that against what the doctors and clinical practitioners suggest. We have to remember that many are run by insurance industry and medical companies and are told which tests to run and what procedures to push. That's all just be careful, stay on top of medications and their effects and interactions and question things. And keep questioning things it keeps me active and on my toes too. Take care, best of luck and hang in there

By Lynnie2 On 2014.10.29 16:38
Thanks for your reply but I looked up the FEES swallowing test and there isn't any anesthesia and only a numbing spray put in the nose so the tube won't be uncomfortable and it's only a think tube, so I can't see how that would be hard for my PWP.
The following was on the website about it:
You will be seated so that you are comfortable. The tube will be gently inserted through your nose into your throat. You may have something sprayed in your nose or throat to numb it so that you don't feel the tube.

You will be given some things to eat and drink. They may be colored with food coloring so that they are easier to see. The SLP and doctor can see a picture of your throat on the computer screen.

The SLP may also test how well you can feel things in your throat. The tube blows puffs of air into your throat. This part is called sensory testing.

A couple of years ago he also had a colonoscopy and came through without any problems. It showed that he had diverticula so he had to avoid seeds and nuts. Everything else was okay.

I understand there could be risks when on certain medications so tests should be done so I appreciate your concern.

The other test is with barium and they only put a little in the food for the x-ray so no anesthesia is used.
If there is any problems, they could recommend what foods to avoid.
There wouldn't be any surgery.

By jcoff012 On 2014.10.29 16:40
I need to insert myself into this conversation...Carl had a colonoscopy two years ago with no ill effects. I would suppose a lot of tests and procedures are like that. His doctor had performed the procedure on a great many patients with Parkinson's, so he was very caring and suggested Carl use an anesthesia that a "normal" patient does not use...we had to pay for it out of pocket, but it was worth it...Carl breezed through the procedure and all was well.

He has not had the swallowing test, as he is not at that point, yet. I very much agree with extremely cautious, ask a lot of questions, and go cautiously forward...I also agree that questioning the purpose and need for this is of utmost concern...the outcome is what would make me give pause.

You seem to be asking a lot of questions, good for you! Dan's wife, June, had a swallow test, right Dan? I defer to the other sage people who have more knowledge than I.

By dans316 On 2014.10.29 17:21
June did have the swallow test done in June. The result was a silent aspiration of liquids, no problem with solids. This was the x-ray, not the FEES, so there was no anesthesia involved. At no time did they even suggest that procedure. She did go for therapy to hopefully help the swallowing issues and the LSVT voice therapy. I thought her coughing did seem to be less frequent, but then I now give her thicker liquids such as orange juice with pulp, and milk shakes. As far as the LSVT, it wasn't all that effective. She is still difficult to understand at times, but I'm wondering if that might be related to her ill fitting dentures???? She gets her new ones on Friday, so we're crossing our fingers.

By dans316 On 2014.10.29 21:32
This is one of the exercises that June was given.

Exercises to strengthen closure of the Larynx for swallowing.

1. Take a breath and hod it for 5 seconds. Relax. Repeat 10 times.

2. Glide your voice to as high of a note as you can while saying "eeeeee" Hold it for 3-5 counts when you get to your highest note.
Relax. Repeat 10 times

Do the exercise 3-5 times per day.

Another exercise.

Tongue Base Exercises
Tongue base exercises are utilized to promote and strengthen base of tongue movement. Stronger base of tongue movement will aid in bolus transit during the swallow and may also help to reduce residue of food/liquid in the area below the base of the tongue and/or in the pharynx.

Since both the /k/ and the /g/ sounds are made with the back of your tongue, these are great sounds to practice with to help to strengthen that area.

1) Pretend you are going to say the sound /uk/, like at the end of the word "duck".

2) Just as you are about to say the /k/ sound, hold your tongue in position (your tongue should be up and back)

3) Hold for 3-5 seconds, then release and say a strong /k/ sound.

4) Once you feel comfortable, use a tongue depressor or a spoon to apply resistance to the back of your tongue as you are holding it in an up-back position (just before you say the /k/ sound).

5) Pretend are going to say the sound /guh/, like the last sound you hear in the word "dog".

6) Just as you are about to say the /guh/ sound, hold your tongue in position (your tongue should be up and back).

7) Hold for 3-5 seconds, then release and say a strong /guh/ sound.

8) Once you feel comfortable, use a tongue depressor or a spoon to apply resistance to the back of your tongue as you are holding it in an up-back position (just before you say the /guh/ sound).

By lurkingforacure On 2014.10.31 08:39
Try having your PWP chew gum. I have read that can help.

Thanks, Al, for weighing in, what you said is very true. Every procedure has risks. And, it is not that uncommon for a colonoscopy to CAUSE a tear or hole in the colon! Same thing could happen with this procedure they are recommending.

I would be extremely cautious in putting anything physical in my husband's body (even if no anesthesia, the procedure will be stressful!) and be sure that whatever information obtained would translate into a concrete benefit...for him, not a billing department. The procedure isn't really that helpful if all it does is confirm what you already know.

By Lynnie2 On 2014.11.07 12:36
He has also agreed to do some speech therapy. It is the Lee Silverman program however we will only see the pathologist one day a week and he'll have homework to do where I can guide him.
We haven't done the assessment yet, but the appointment is later this month.
We'll do it on a trial basis and if he finds it isn't for him, we can stop anytime.

By mylove On 2014.11.08 10:12
Re: colonoscopies and other routine wellness exams, Ben's had several, with no ill effects. He likes to say (with his trademark dry sense of humor) that "there's no point in looking for cancer, etc because you only get issued one major disease and he's already got one". ;) While we WISH that were true, most of us are over 50 and getting into that bracket where we share PD and a whole slew of OTHER fun things we would rather not experience.

So...our mantra is: deal with your daily PD, but don't forget to keep up on the recommended schedule for other issues. Get those mammograms and screenings. PD is hard enough without adding another challenge to the mix. Always, ask your doctor what's right for you. The ones we have worked with have been very helpful in making sure our procedures were customized for his PD idiosyncrasies. YMMV.

By Lynnie2 On 2014.11.08 15:59
He had a colonoscopy a few years ago and he had no problem except for a lot of gas
The doctor said he had diverticula so has to watch seeds and nuts, but he didn't have any pulps.

By mylove On 2014.11.09 10:38
Ben too. Popcorn and nuts are the worst, but also his favorite snacks. ;)

By kathys On 2014.11.16 21:02
Just joined the forum and read about the swallowing problem. My husband and my Dad who passed last year, both dealt with swallowing problems due to PD. My Dad did little in the area of speech therapy and his cause of death was aspiration. My husband had a severe fall in July do to acting out a dream that caused him to walk into another room in the dark and trip into a table. He was paralyzed from the waist down and had surgery to repair several vertebrae. He had a barium swallow test because he had trouble swallowing his meds which he didn't pass. He was on nectar diet (thickened liquids) and chopped foods.
They also crushed his meds and he took them with applesauce. My father also had this but was not compliant. He loved his food and nonalcoholic beer.
My husband then went to an acute rehab facility and ate for three weeks until he developed an acid reflux from the crushed meds. They did an MRI and felt he had a tear in the esophagus. Back to the hospital where they decided no food or drink to help heal the wound. He had another surgery to put a feeding tube in. (Second anesthesia)
An ENT specialist basically told us he would have this tube for life and he wouldn't pass the barium swallow test. This was devastating. Food is such a social thing. It is a ritual with us. My Dad had a restaurant, I love to cook and entertain, some eat to live, but we live to eat. I read the internet all night trying to find another avenue refusing to accept the doctor's diagnosis. I found something called vital stimulation, V-Stim. It is electrodes attached to the throat that stimulate the nerve ending to work the muscles. It has great success with stroke victims for speech and swallowing. I found out they offered it at my husband's rehab and requested it. After using the V-Stim he then had another barium test and passed! He also is walking with a cane now. While getting X rays when he fell they found a large mass on his kidney and now improved enough to have another surgery to remove the kidney and cancer. (3rd anesthesia) One step ahead and two back. Yes, I do think anesthesia affects people with PD. If you can avoid it, do, if you can't, sometimes you don't have a choice and always don't accept what a doctor says as final. Be your own advocate!!!

By carman96 On 2014.11.16 22:08
Kathys, you are right, we must be an advocate for ourselves as well as our PWP.
Our MDS doesn't want my husband to have any anesthetic or invasive procedures. His Primary care physician doesn't even think he should have a colonoscopy. Due to his level of functioning and dementia, if we found out he had cancer, would we even want treatment? His body and mind would not be able to recover even to the level he is now. Pretty sad, but we have to consider all the consequences.
Joan Rivers died as a result of a "routine" endoscopy.
It's always about risk versus benefits, for any medication or treatment. Educate yourself as much as possible, and get a second opinion if you feel you should.

By carman96 On 2014.11.17 07:47
Kathys, welcome to the group. Sounds like your husband has been through a lot. Maybe you could start another thread and tell us more about yourself and PWP.

By carman96 On 2014.11.17 07:54
Jane, my husband is also not at the point of having swallowing problems. But he had the swallowing test and they found that his face and tongue muscles are weaker on his left side. The speech therapist is working with him with the same exercises that Dan mentioned.
I guess what I'm saying is it's never too soon to work on those tongue and swallowing muscles.

By Lynnie2 On 2014.12.06 17:49
I started this topic about my husband who has had a cough now for over 4 months. When we were at the MDS for his Botox for his excessive eye problem, I mentioned about the coughing. He didn't exam him as it wasn't his regular appointment, (just for botox) however gave me a letter recommending a swallowing assessment which I gave to his family doctor. It took over a month to get the appointment with the therapist
He had the assessment and the therapist recommended further tests, etc. and he was even going to have some speech therapy.
Long story short, about 5 weeks ago my hubby had chest pains in the night and his stomach also hurting. I called the health line and they recommended we get the ambulance in order to take him to the hospital.
When I got to emerg. his stomach was hurting more than his chest and the doctor thought he had acid reflex and gave him some medicine to ease the pains. He had eaten a heavy meal the night before when out for dinner.
I was more concerned about his cough as he had never had x-rays and so they took an x-ray and ultra sound and they discovered a large mass on the right lung. What a shock.
They referred him to a Thoracic surgeon, who in a few days had his nurse call us.
She set up a CT scan of his head and a Pulmonary Function breathing test and also a PET scan which is like an MRI but goes over the whole body to check the organs, etc. I think it can also see if there is any cancer in the body but I may be mistaken about that part.
Anyway, he we had to wait longer to get the PET scan appointment as there is only one machine around this area, however, he had it yesterday, so all the tests are done.
We have a follow up appointment next week to consult with the specialist to see the results.
We don't know if it's cancer and if so what they will do.
Right now we just have to be positive that is isn't serious.
He still coughs and spits up phlegm but no blood and his chest doesn't hurt. He smoked for 25 years and quit 25 years ago so there is that possibility .

Hopefully whatever it is, can be treated. I am rather stressed until we know what it is.
Wish us luck and we need your prayers.

By Mary556 On 2014.12.07 14:43
Remembering your husband and yourself in prayers, Lynnie.
God bless you.

By jcoff012 On 2014.12.07 16:58
Lynn, we have had Nigel for three days and nights, so I haven't been online til today, Sunday...As a cancer survivor, trust me, the worst part is all the testing, retesting, etc...the unknown. Once you know the course of treatment, the diagnosis will somehow make you feel in control. If this is not cancer, the doctors will give you other ways of handling a diagnosis. No matter what this latest problem is, you will be able to attack it head on and with the courage you always advise others to have...and have it, you will.

Remember, we are all here if you would like to share your journey...hugs and love to you both...and, remember, we all can handle anything, once we are armed with good information. Jane

By Lynnie2 On 2014.12.08 08:24
Thanks Jane,
I'm going to try and remember your advise when we go for the follow up this Thursday.
It is the unknown right now that bothers me, and I've got to stop speculating the worst.
Thanks again. I am going to carry your message with me,

By Lynnie2 On 2014.12.14 07:59
We had the follow up this week and the good news it the CT scan of the head is clear and there isn't any signs of cancer in any other part of the body except the lungs.
The PET scan which highlights possible cancer, showed the mass in the right lung and 2 small nodules. The good news it that it didn't highlight the mass as intensely as it usually does, so it could be in the early stages.

We talked to the doctors who gave us options. Either do a biopsy, and also a Bronchoscopy (tube in throat) to check the lymph nodes, or do surgery to remove the mass, but if he isn't able to withstand surgery, then radiation.
Some people opted for surgery first without knowing if it's cancer.
We are going with the bronchoscopy and biopsy first and then go from there.
He is scheduled for the tube thing 3 days before Christmas and I am waiting for the other appointment which will likely be after Christmas.
We are okay but keep thinking about things.
The doctor said if it isn't cancer than they treat it a different way, so we'll just take one step at a time.
The doctors seems very kind and took their time with us. We have to travel approx. 90 minutes to the hospital and in winter weather. We hope it doesn't snow on the days we have to go.
There are motels for me to say close to the hospital if it comes to surgery, so that is good to know.
Keep us in your prayers.
The doctor doesn't think it's fast growing as it didn't grow any within the last month, so that good to know.


By jcoff012 On 2014.12.14 17:29
Lynnie, been wondering how it was going for you both. I DO understand what it is like....I think I had six vials of blood taken one day and two the next...all the while taking double doses of vitamins, liquid iron, iron pills three times a day, and eating an iron rich diet for two weeks before surgery...all because my iron count was so extremely low because of the cancer! Seemed like endless tests, endless decisions, two surgeries locally, then we had to drive three hours through the mountains to have another two surgeries in San Francisco...oddly, at UCSF, the cancer center, which is where Carl goes, but to the Parkinson's Center!

But, like I said, you will be able to face this once you take that first step. Trust your doctor...and, as with Parkinson's be SURE you have doctors you trust...get second, question, see if you have my wonderful oncologist and her team said, "ASK. We want you to have as much information as we do," and, my wonderful doctor whom I love dearly says, "I work FOR you...ask me anything, anytime." And, I did and do.

It isn't easy facing the unknown before the final surgeries weren't til just before Christmas, and we didn't get results til ten days later! So, yes, it is difficult, but take heart....we are here for Mom is finally home, so I will be on more now, if you need me, just holler! Hugs and best of luck...Remember, get as much information as you can so that you can make an informed decision...Hugs, Jane

By Lynnie2 On 2014.12.14 22:44
Thanks Jane for your support. You mentioned about getting second opinions, well it's hard when you have to wait for test appointments and doctors appointments just with one doctor, so getting other opinions just makes things go slower and what if the mass gets bigger?
The doctor we saw gave us several sheets about the different steps and with the biopsy and the Bronchoscopy that is scheduled, it is the first step to see what we are dealing with.
I think if we went to another doctor, it would also be in another city and too confusing to find.
I think we can trust these people and they seem kind and not forcing us into anything.
I think it's better to get the biopsy first rather than jump into the surgery right away (as some people might do, just to get rid of it.

I find support on here and also my close girlfriends so I am not alone.

We got a new car a few days ago, as we traded in 2 vehicles and I've been trying to figure it out. I had to drive in a thick fog tonight and it took me a while to find the fog

I was at our Church group Christmas party tonight and I was acting silly, which is unusual for me. They said what got into you and laughed.........I only had water at the restaurant.
Hey, I've been so stressed the last 2 weeks, so I guess I was letting my hair down or something. Anyway, I had

By carman96 On 2014.12.15 10:56
Lynn, so sorry you are having to go through this. Glad you had some fun with your church group.
Sounds to me like biopsy is best choice for now. Have you consulted his Neuro on these treatment options?
I know what you mean about having to wait so long to get appointments etc. And having to travel a ways to get specialists.
Hoping for the best for your husband.

By Lynnie2 On 2014.12.15 13:05
No we haven't consulted the MDS but he has a Botox appt. this week and we can ask him then. It isn't his regular annual apt., but hopefully he will take time to talk about it. He is usually good.
My husband has to go off his Warfarin 5 days before the Bronchoscopy, so will have started that before seeing the doctor.
There is always a problems because going off the Warfarin messes up his INR, (blood count).

By bksquared On 2014.12.15 23:49
Sorry to hear of these issues. The biopsy will help the medical team decide the most appropriate course of treatment. Surgery and/or radiation are difficult for the healthy so your husband with PD is facing a long recovery. But with positive attitude he will get through it. Jane is correct, the unknown is worse than the diagnosis. Modern medicine offers so many approaches to treat disease. Don't dwell on the what ifs. Easy to say hard to do. Focus your energy on the what ares of each day and the two of you will get through this. I will pray for a positive prognosis.

By Lynnie2 On 2014.12.16 08:18
Good news. He can get the biopsy closer to home instead of travelling a long distance.
If we waited for the distant hospital, (where he is getting the Bronchoscopy)
then it would be the end of Feb. before we could get an apt.
Who knows if the tumor will grow as that's 2 1/2 months away..... ??
They think the other hospital can take us in January sometime, so we'll be waiting for that appt.
It will be less stressful for my spouse, getting up early, and we know that place.
He has the Bronchoscopy on Monday at the other hospital, and we see the MDS this Thursday, so we'll tell him about it. The surgeon was going to send info to him anyway, I believe.
Also if we waited for Feb., the weather could be snowing and blowing as you never know from day to day around here during the winter.

By Lynnie2 On 2014.12.17 18:43
Even better news:
The biopsy is right after the New Year.
so that is good.........:>;)

By carman96 On 2014.12.18 09:34
Lynn, yes it is always better to have things sooner and closer!
I hope you get good news from the biopsy.

By Lynnie2 On 2014.12.26 06:41
My husband had the Bronchoscopy on Monday so we were at the hospital over 4 hours.
I was by his side before he went in and then I went for a coffee and a little break. When I got back, the doctor talked to me about it.
He was checking the lymph nodes and didn't think there was cancer, but said the biopsy would confirm.
He thought the large mass in the lung could be a different cancer, but I didn't write the word down, but asked if that was good or bad. He said it depends on whether it's fast growing.
Then I went to the ward where my husband was and he was still out but came too soon.
Later they gave him water and he could swallow okay and in about an hour they thought he could go home.
He was still wobbly and off balance so we got a porter to take us to the car, which was on the same level as the department for the procedure.
I had packed some pudding cups for him to eat, so we stopped at Tim Horton's parking lot and he ate his pudding and I had some too.
He was acting sort of odd then and doing silly things.
We got home around 6 p.m. and I made some soup for him as they said not to have a heavy meal, even though he hadn't eaten since the day before.
He missed on dose of his Parkinson's before the procedure and if I had told them, they could have given it to him, however he got the early dosage okay.
Anyway, he went to bed at 8 p.m. and then woke up at 10 p.m. to go to the bathroom.
He came out carrying his toothpaste and tooth brush and I told him what he was doing. He just kept coming out and put those things on the bedroom dresser. I said Wayne, do you know what you are doing. He than said,
something silly and bowed.
Then he got up later when I had gone to bed and brought in a towel and put it on the pillow. I said what are you doing with the towel, and he said laying on it.
Well, he was better the next day and didn't remember doing those things, so I thought it was from the sedative he had.
Well later for lunch we had soup and cracker and a sandwich, and I cleared the things off the table except the cracker bowl or Tupperware tub they were in.
I was busy doing something in the kitchen and then noticed he was breaking most of the cracker up in the bowl. He sometimes falls asleep at the table, but I didn't think he was asleep then. I said Wayne, do you know what you are doing. and he just looked at me.
I said are you alright and he yelled, Yes I'm alright, but he just had a blank stare.
I got upset and called the nurse of the cancer doctor and she said if he isn't acting right then you should take him to the hospital but don't go by yourself, because at this point I was crying.
I called my neighbor and he came over and thought I should call the ambulance as my husband didn't want to go to the hospital, so I did.
They check him over and didn't see signs of a stroke, but tried to convince him to go to the hospital.
At this point he wasn't answering very well, but as we found out, he was angry with me for calling the ambulance and thought it was a waste of time. I said the your wife was worried about you and wanted to make sure you were okay.
Anyway, we signed off but they stayed for a while, as they were trying to get their computer to coordinate, and in the meantime watching my husband.
They left, but on the way out, said if I needed them even 5 minutes later, then don't hesitate to call.
Well, I didn't say anything to my husband and he sleep in his chair for over an hour, and in the meantime I went to the neighbors to tell them what happened.
When I got back, he put his arms around me and apologized. He's been okay since, but gets confused on a little things yesterday, so I don't know if it's from PD or the other.
The Bronchoscopy just took a lot out of him and the nurse said if we get the results and it's negative, then they will do the biopsy of the large mass.
But if it's positive, that means it's in the lymph nodes and they won't do the mass. I think the lymph nodes are a more serious cancer.
She is pushing for the results on Monday and she'll call me Tuesday as he has to get a blood test before the biopsy on Wed, for the possible procedure on Friday.
God......... I've been so stressed and yesterday (Christmas) I got diarrhea and aching, which is probably from stress and lack of sleep. ........
I'll be glad when we know for sure what we are dealing with..........

By jcoff012 On 2014.12.26 17:11
Lynnie, the reason they are watching the lymph nodes is because if the cancer shows in the nodes, it needs to be aggressively treated so that it does not spread to other organs. That is why my oncology team removed nodes from both sides of my is also why I was left with left leg lymphedema! While it is bothersome, sometimes extremely painful, I am glad the team removed them to make sure my cancer had not spread. I would, again, tell you to hold your head up, take this additional journey one step at a time, and don't anticipate or expect the worst...I am eight years out and no recurrence, so there is always hope.

You are a good wife and are doing your best...and doing the best for your husband. As much as I love Carl, he was not walking in my shoes, so, like your husband, you have no idea what goes through the cancer journey. That is NOT a criticism, just a statement of fact. We all need to do our best, but give the one we love time and space to handle hard times as best we can. Carl told me he just wanted to DO something...ANYTHING throughout it all, but in all reality, he couldn't...

Again, take care of yourself...laugh a lot, forget what is ahead, don't dwell on the bad...look forward to another new year...and keep posting...we ALL care and want to help any way we can.

You are an amazingly kind, lovely woman, caregiver and wife. Get well! Eat something decadent tonight! splurge, laugh...enjoy the season! Love and hugs, Jane

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