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Update on my mom's condition

Ashleylouu's picture
Ashleylouu
Posts: 25
Joined: Dec 2012

Hello everyone! First of all, I want to apologize for not getting back to some of you when you posted on my original topic ‘My mother has throat cancer.’ I genuinely appreciated everything you all had to say, and it meant so much to me that you took the time to reply. Much of what everyone told me helped SO much in that initial, scary time and I was lucky enough to make contact with ‘Billie67’ who has done WONDERS with keeping me sane and answering my questions. After we found out the news, things seemed to fly by so quickly that I just couldn’t find much time to get back on here but I still read, and appreciate, all of it.

One bit of good news I have for those of you that told me to stop googling things and to not pay so much attention to statistics… My googling days are officially over! At least for medical things, I learned my lesson!

When I first posted we knew very little information, but now my mom has gone through all of the various tests; PET scan, CT scan, blood work, x-rays, biopsy, etc. During the biopsy she also had a mass removed that was blocking her airway. It has come to the conclusion that my mom has stage 4 throat cancer. Tomorrow, she will be going in for surgery to remove the entire voice box, along with affected lymph nodes, and doing some kind of voice restoration… that last part still has me slightly lost. After she will be having radiation, and I believe chemo. I’m a little freaked with how sudden all of this is, but I’m happy that something can be done. My biggest fear from the beginning was that there was nothing that could be done, or that it had spread outside of the H&N area, thank God it didn’t.

We’re still pretty worried, but things have gotten a little bit easier. I suppose as easy as they possibly could be. I’m also pleased to say her doctor made a total transformation and went from grumpy, mean doctor that scared the hell out of us to a nice, normal doctor! I think maybe he realized he was getting ahead of himself. He told us she has a 40%-60% chance of making it to the 5-year point without relapse… WELL… he said that in so many words, and Billie was kind enough to explain to me what all of that meant, because of course I initialed freaked out a little bit. She also has a very kind radiology oncologist that has met with her.

Tomorrow she has to be at the hospital at 7am and along with the surgery, they’ll also be putting in a feeding tube. He said it would be about 6 hours, so I’m hoping I can stay strong and patient in those 6, possibly more, hours. She’ll be there about a week, assuming there are no complications. Rereading my previous post, I feel SO much more confident and well informed. I’m still scared, though, because my mom is everything to me. Thankfully I have my fiancés help in all of this but outside of him, I’m my moms sole caregiver and that's hard, but honestly, I wouldn’t want it be anyone BUT me, I just hope I can do everything right and be strong for her, along with taking care of everything she would usually take care of. But those are big shoes to fill.

Thank you again to everyone that was so kind to me, and also thank you for taking the time to read this.
-Ashley

Vee1
Posts: 59
Joined: Nov 2012

Hi,

Just to let you know I will think good thoughts for you both tomorrow.  There are good people in this forum who can and will help you every step.  I admire your strength and courage (and Mom's, too!)  Let her know a whole group of people are thinking good things...

 

Blessings.

-V

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Your mom is going to do fine and we will all be here patiently waiting on an update from you. Remember thru all of this to take time for you and remember to get some rest. You'll have some busy days ahead for you.

You are so sweet to say such nice things about me, I just want to help where I can. I know how scary it is when you start hearing things that are foreign to you yet you know they are serious. There are many good people on this site that can help you and are so kind. I'm glad you found us.

Take care,
Billie

Ashleylouu's picture
Ashleylouu
Posts: 25
Joined: Dec 2012

Billie, as you know I have a hard time trying to remember to take time for myself, but I'm working on it! All of those nice things are true, and you are 100% helping! I'm glad I found this site as well, even if it doesn't always load for me or let me log in! It's still a wonderful place (:

Ashleylouu's picture
Ashleylouu
Posts: 25
Joined: Dec 2012

Thank you so much for your good thoughts! We definitely appreciate them! Thank you so much, I get my strength from mom and she is STRONG. I definitely let her know many people were thinking good things, and that was a great comfort to her!(:

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

I will be praying for your mom and hope the surgery goes well.  Please continue to post and keep us updated.  Your mom is very lucky to have a strong girl like you.

 

 

Kathy

Ashleylouu's picture
Ashleylouu
Posts: 25
Joined: Dec 2012

Thank you so, so much, Kathy!  I would definitely have to say I'm the lucky one, and I do the best I can... she deserves it. I finally was able to post an update... the darn site wasn't working for me for a bit!

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Wish I had found your post earlier. I had my voice box removed last November.

  • First I want to assure you that pain is well controlled. I spent 10 days in the ICU.
  • You mom will TEMPORARILY lose her ability to speak. But there are 3 methods to restore speech. 1) A TEP Voice Prosthesis, 2) an electro larynx, and 3) esophageal speech. Different patients choose different methods. Many patients use more than one method.
  • Google WebWhispers, which is a web site that for/by patients who have had their voice box removed.
  • All of the methods for restoring speech do not work well for a couple of weeks. This is due to the swelling and the food-tube (likely a nasal-gastric tube) that goes through the esophagus.
  • Expect your mother to be unusally weak for a weak or two after getting home. I actually used a walker for about 3 weeks; to make sure I didn't fall. However, strength will return.

I am a great advocate for esophageal speech. In the 1950's and 60's, about 60% of persons without vocal cords learned esophageal speech. Today it is only 1%. The reason is that the medical community no longer advocates it. (The other two methods are initially easier.)

In esophageal speech, the patient swallows air and burps to speak. This is not a good description, but it gives you an idea. When your mother is feeling good, have her swallow then try to make the "k" sound. The swallow and say "cake" or "cup". Words with hard initial and final consonants are the easiest to voice. If your mother can make any sound at all, she will need voice therapy to improve. If she cannot make any sound, then one of the other methods for voice restoration is for her.

Also sometimes patients (especially men) will burp after drinking carbonated beverages. If your mother ever burps, ask her to try to pronouce a simple word with that burp. It will give her an idea of what to do.

TEP stands for Tracheal-Esophageal Puncture. It is a hole between the airway (trachea) and the food-way (esophagus) The prosthesis is a one-way valve that allows air to go from the lungs/trachea to the esophagus/mouth. To get the valve to work, the patient must close off the hole in the neck. However, if your mother has a tube in her esophagus, this method will not work until the tube is removed. When air is forced through the prosthesis, the esophagus vibrates which gives rise to the sound. Words are formed normally by the mouth.

It takes just a little practice to get the prosthesis to work. Just the right amoung of pressure applied at the right time. Mistakes produce coughing.

I have a free computer application that acts like a tape recorder and can help with relearning speech. It's late and I may not be making much sense. I'll post again in the near future. Rick.

Ashleylouu's picture
Ashleylouu
Posts: 25
Joined: Dec 2012

Rick, thank you for your reply! So far mom has been doing pretty well with pain, but she was only in the ICU 4 days and moved today. As soon as I finish up here, I'll be checking out that website! Don't worry, what you said does make sense. I may not make the most sense myself because I've gotten very little sleep since the surgery and if you see my most recent post we've had a couple issues with some nurses... They've talked with us a little bit about various kinds of methods she can use for speech, but you definitely gave me more info. I think it makes more sense to me coming from someone who has experienced it personally as opposed to a doctor who knows it medically. Mom mouths a lot of things to me so she doesn't have to write everything down and I'm getting great at understanding her, and a few times she's attempted to communicate she's actually made SOUNDS. I was shocked, I could almost, very faintly HEAR what she was trying to get across. I thought I was entirely insane, but her doctor heard it and looked at her for a second, looked at me and said "did you hear that or am I nuts?" He asked her if she knew how she did it and she shook her head and he talked with her a bit about it, basically what you were explaining about 'burps.' It's just a shame she doesn't understand it. I know it's really frustrating for her to not be able to communicate properly, and I know she hates writing things down. Thankfully I'm really good at reading her lips and can let people know what she's trying to say. Thank you so much for the information and explaination. In just a little bit  I'll be googling that site (:

CivilMatt's picture
CivilMatt
Posts: 2934
Joined: May 2012

back to the top for you

luvofmylif
Posts: 344
Joined: Sep 2012

Wishing your mom , you and your family strength through this journey. The good thing is now you are in the fight and that made me feel better knowing that we were actually treating the cancer. The diagnostic and planning phase was agonizing.  At least in the treatment phase you are making headway and taking care of the cancer.

One day, one hour or one moment at a time. And remember the human body is amazing with everything it can go through and with time and care bounce back. Just can rush healing though. Difficult concept for me sometimes. Healing comes with its own pace

Joan

Ashleylouu's picture
Ashleylouu
Posts: 25
Joined: Dec 2012

Joan, you're right... things actually moved quickly and in a way it felt way too fast, but it also felt like it was taking forever and it was terrible waiting around wondering if or what could be done. The thought of surgery was scary for us both, but I'm really happy we're on our way. I too have a hard time accepting that this is a 'slowly but surely' kind of thing, especially since this is still pretty new. I've never been good at waiting, especially not with something so important. Thank you so much for your well wishes. They mean the world to us both!

Ashleylouu's picture
Ashleylouu
Posts: 25
Joined: Dec 2012

Hi everyone! I would have been back sooner but everytime I tried to get on here it wouldn't load, or said page could not be displayed. Not sure if it's me or if anyone else is having similar problems... But finally, I got on by googling my own post and loggingg in through that. It's slow, but I'm here!

I have good news, and some not good news... but the not good news isn't about my mom's condition, THAT is good.

Mom's surgery went wonderfully. The doctor came out much sooner than expected, and while he said it was a little larger than expected, he got it all and it went better than he thought. When I first saw he came out early I was worried but thankfully it was good news. So far, she was in the ICU from the 3rd until earlier today. They said she could have been moved sooner, but they thought the one on one care from the ICU was good. The doctor is pleased because my mom is already able to swallow a little saliva and her drains came out yesterday. All in all, she's been doing great. She's been handling this well. She had a blood transfusion the other day, they said her blood count was around 7 and the doctor wanted it around 10. He explained to me that all the fluids she was getting had a lot to do with this. That also went well without issue. She was also started on something called Jevity 1.5 for nutrition. Today was she was moved to a regular room and she'll be released Thursday or Friday. They were talking about sending her to a rehab place for a couple days after she's released to help her out with a couple things, but not sure what will be happening there. The only thing that didn't go how it should was the doctor that was supposed to do the PEG just never showed up, so they'll have to go that when she heals before radiation starts.

Now here's the bad/irritating news:

I'm no nurse, but the doctor told me that she would need to have her throat cleaned, suctioned and well taken care of. He told me especially in the beginning, there would be clogs that would eventually lessen but right now it would be important to pay attention to them... so even I understood this fact.
Everything was GREAT, until the 5th. That day, her stitches ripped on her NG tube in her throat because the feeding tube got caught on the IV hanger and I pointed this out, the nurse didn't pay attention and yanked it away pulling the tube several feet out of her throat and off of her skin. This obviously caused mom pain and upset her but they assured us it was no big deal, put it back in, and the doctor would re-stitch. Throughout this whole time, I'm trying to tell the nurse mom's blood pressure and pulse are going up steadily throughout the day and that she's complaining it's a little hard to breathe. Later, the feeding tube disconnected which really upset mom, because she obviously couldn't look down and see what it was and just saw SOMETHING coming out... I went to get her nurse quickly and was told by another one to "hold on, she was on the phone." (To make it easier to follow my story... her nurse was named Diane, the one I told about the tube was Patty.) Finally, they came back in to handle it and at this point her blood pressure was about 141/71 and her pulse was in the 150's... they kept saying she was panicing, that it was just a panic attack and to calm down. She did and it BARELY went down, and her oxygen that was usually around 96-97, was down to 90 (steadily going down throughout the day.) I said this A MILLION TIMES. They didn't listen.

Some time goes by and mom asks me to stay the night with her because she's scared. At this hospital, that's allowed. There are no visiting hours, you can be there anytime except for 7-8am and 7-8pm for shift changes. Around midnight, Patty comes in because my mom had to use the bathroom and she yelled 'it smells like cigarettes in here!' She asked me if I smoked and I said no, I quit but I am around smokers and was earlier. I quit June 16th 2011. She didn't say anything for a minute, then turned around and said, "You need to think of your mother. She can't be around that. I can smell it on you. You're going to make her sick!" (At this point, I'm irritated because as much as I'd love to go smoke a pack, especially now, I'm not, and I already said this and told her I'd be more careful about being around people who did so I wouldn't smell like it.) So I replied with, "That's nice coming from someone who doesn't even care my moms pulse and blood pressure have been high, and her oxygen low." She then yelled at me that I need to think of my mother, her vitals are normal, nothing is wrong, etc. She told me it was MY FAULT my mom's vitals were high! That I was upsetting her... I was keeping her calm! I said to my mom I'd be right back, I needed air and would be back in 10 minutes.

I came back, and Diane told me I COULD NOT come in because mom was sleeping. I explained that mom wanted me in there, it was her request, and I wanted to see my mom. She told me no, and I tried 3 times. Finally she told me mom didn't need any 'disruptions' implying I was keeping her up. When I was in there, I held moms hand and she slept for 3 hours. I finally went home to get a few hours of sleep. I came back in the morning and Irene (another nurse) told my mom was up all night. (Let me point out that Irene is WONDERFUL!) I went into moms room and mom looked at me and said, "You left me." That BROKE MY HEART! I asked Diane to PLEASE tell her when she woke up that I DID NOT leave, that I was FORCED. And she said, "I'm not waking her up for that." And I said IF she wakes up and wants me, PLEASE call me, that I would come at ANY time... she never called. Mom said she asked for me ALL night, that she was scared and awake and thought she was dying, and I wasn't there! THEN, I find out from Dr. Charles and Irene that mom was suffocating that night/morning, that she had a clog that was slowly building the day/night before and could have been prevented. The doctors words to me were "She almost died." Thank GOD that he and Irene came when they did. Irene KNEW what was happening right away. Dr. Charles told the nurses to "educate themselves" and that they KNEW what was supposed to be done. He was furious. He gave them clear instructions, and Irene promised she would explain to Diane. Mom also told me ALL NIGHT, Diane was telling her she was just having a panic attack, to calm down, and gave her zoloft and ativan, and ignored her when she said she couldn't breathe.

Diane came that night (the 6th) and I confronted her- I told her what Dr. Charles said, that my mom was suffocating! Not panicing! Diane wouldn't listen to me, she said "no, no, no. That's not true. Her vitals were FINE." (The doctor explained to me her pulse especially was high because she was working harder to breathe around the clog.) I asked why no one called me when mom asked for me, or when she was upset. She said "She never asked for you" while mom was nodding yes she did. I shouted, she can't talk! And her dry erase board was across the room! Irene came in and told Diane I was right, and explained what happened and gave her strict instructions to suction the tube, etc. Diane agreed, and I went home feeling better. I also asked that if there was a problem, for someone to call me.

Today I come in... mom had a trach in her throat and she was extremely scared, crying! She was worked up, upset, and angry! I asked why, and she said "It happened again." And she told me that after it happened, the nurse claimed "Oh she wouldn't let me suction it." Mom said that was UNTRUE, Diane didn't even try! She barely even came in her room! On top of that, throughout the night, mom called her a MILLION times because she had to go to the bathroom and no one came and she went right there in the bed! I was fumming and I told the head nurse and the director of the hospital... Diane has been fired. I was also told this is not the first complaint, but it has never been life threatening or this serious. Apparently, the doctor himself also complained about her after this. When I saw him tonight he was really upset and said the trach was because it would help out and he didn't want to give the nurse a chance for it to happen again... he said he knew she had complaints but didn't think she would ever do something like this. How could she dare even say my mom would not allow them to help her? That my mom would go through a life changing, life saving surgery only to deny a simple suction? This just broke my heart. I saw how terrified mom was the first time... she didn't deserve this on top of everything else. They assured me Diane would not be caring for my mom or anyone else and fired her on the spot. I would like to add that aside from Patty and Diane, mom had some amazing nurses I wish I could stick in my pocket and take home to take care of her! (And these wonderful nurses also spoke out  for my mom about what they witnessed.)

Whew. I needed that vent... Thanks to everyone for the well wishes, I'll be replying to your comments shortly! And thanks again for reading such a long post... (: I apologize if it was hard to follow... it's been a loooong couple days and I'm beat.

katenorwood
Posts: 1821
Joined: May 2012

Ashley,

I feel so bad for your Mother.  I have been in your shoes when my Mom was fighting her battle.  You done good girl....never ever take rotten treatment as the norm....it's not.  Hope all continues to improve for your Mother, will be thinking of you both !   Katie

Ashleylouu's picture
Ashleylouu
Posts: 25
Joined: Dec 2012

Katie, thank you very much! It just simply isn't right, and not even just for my mom. What about all of the patients this nurse has 'cared for' in the past? It's terrible, but thankfully that won't be happening anymore. I absolutely won't accept anything less than the best for my mom. I'm so sorry you've been in the same place! Hopefully now that she's been moved and that nurse is gone, things will definitely continue to improve. Thank you again, I appreciate you keeping us in your thoughts!

phrannie51's picture
phrannie51
Posts: 3691
Joined: Mar 2012

I can imagine how upset you were!!!  And poor mama....how helpless she must have felt not being able to communicate, and throw on top of that....a nurse who didn't want to communicate!  I felt just sick for her.  It must have been incredibly gratifying that the nurse in question has been fired for her neglect (I sure felt better reading that! Smile).  When my mom had her laryngectomy she had a LOT of mucous the first couple of weeks....my sister did most of the suctioning, and then my mom took over from there.  She used her suction machine everyday, tho...for the rest of her life....just not as often. 

Again...I'm delighted that Nurse Rachet got bagged from her job....and that your mom is doing so well....

p

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Ok that really pissed me off! That is terrible for Diane to even have a license!! I am so glad she is not able to mistreat any paitients anymore. 

 

I hope that now your mom is on a new floor that things are going more smoothly. How is the mucus now? Hopefully they will teach you how to suction it also so when you get home you'll be ready. Keep in mind this is all par for the course, the mucus is a normal thing after this type of surgery. 

 

Is she still supposed to go to rehab?

Billie

Ashleylouu's picture
Ashleylouu
Posts: 25
Joined: Dec 2012

I knew you'd be pissed! I'm just so thankful she's gone, but I really hope she doesn't get a job somewhere else doing the same thing! One thing I wasn't aware of is my fiance told me he spoke with a family memeber of someone in the ICU and they said their father was neglected in a similar way by Diane, apparently she was 'banned' from being his nurse... but now she won't be anyones. Why bother being in a field that requires you to take care of, and not just physically but with compassion, people... people that have been through something SERIOUS... if you just don't care?

Dr. Charles let me know the mucus was absolutely normal and would be less and less over time, but right now it was super important for them to pay attnetion. She still has a fair amount, but it's being taken care of right away before it effects her ability to breathe properly. She's on a different floor now... she got the room right across from the director's office! The whole time I was there today, the second any of the nurses (and a WHOLE lot of them checked on her, including the director herself) heard any 'stuffy' sounds, they took care of it. Tonight while showing other nurses how to do it properly, they let me watch. They said I'd be shown, hands on, how to do it before mom leaves on Thursday.

Not sure about the rehab right now, originally they were talking right when she gets out of the hospital, but her doctor wants her to meet with him first to handle the stitches which will be Monday. I think it's a good idea, but she's not too happy about it because she wants to be home.

Ashleylouu's picture
Ashleylouu
Posts: 25
Joined: Dec 2012

It absolutely broke my heart to see her cry like that, she was afraid to even be there because of that nurse! Now she's quite happy and LOVES her nurses! They're so nice. I was REALLY happy, because they're making sure each and every nurse knows exactly what to do, each shift they re-teach how and what to do. Tonight, about 6 nurses came in with her nurse and she showed them the proper way to suction before she left, and told them to do it several times during their shifts, she alone did it 4 times in her shift and mom was problem free! She has this one nurse now, Melanie, and mom asked me to kidnap her and bring her home with me. Now if I wouldn't get in trouble for that I would, haha. Thanks so much, I'm really happy she's gone, too! I wouldn't want her making ANYONE feel that way.

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