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It's my Birthday and my results were less than I had hoped for

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

Well, I had my swallow survey and I am aspirating.  Very disappointing as I was just to the point where I could down an entire insure and was working on trying new foods daily.  Now I'm on a big STOP until I meet with my therapist.  Add to this my Onc told me today that he wants to do a CT scan next week.  I asked why he was doing one so early (we will be close to 6 weeks post treatment) and he said hi likes to do it at this point to look for anything residual that might be there and require surgery.  Told me that the odds were minuscule that I have any but it freaked me out anyway.   So, here we are, struggling to recover from treatment and keep my pain in check, mucous is back, mouth super dry and the depression monster is starting to follow me around.  Happy Birthday Me.

Sorry about the downer message but it's what I'm feeling and this is the only place I can share and not hide these feelings.

J.

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Well, first thing is HAPPY BIRTHDAY! Sorry you're having a rough day. I would not be too concerned about anything at this point. The things you mention sound familiar during this phase. As far as your doctor goes....he's the doctor.....he knows best. Better to have a proactive doctor that's willing to stay on top then have one that your begging to check on something.

Try to relax my friend. It will be ok. You are entitled to have a downer day....but, the days will get better. So try to enjoy your birthday. Where's that lovely dog of yours???? Laughing

God Bless,

~C 

phrannie51's picture
phrannie51
Posts: 3726
Joined: Mar 2012

on the stop eating orders....but also know that stopping for now is better than aspiration....it is just temporary!!  You'll be bellying up to the table again before you know it.

I agree that having a doc who is proactive is a plus....I was getting nervous about the lack of scans here....it sounds to me like he just wants a look/see.  It's gonna be ok....I just know it.  I can also sympathize on your anxiety, tho...too....don't let your brain get the best of you!!

p

PS.....Happy Birthday!!!!

CivilMatt's picture
CivilMatt
Posts: 2957
Joined: May 2012

Morning Joe,

 

Happy Birthday to you and to many more.

 

You r issues all sound like normal healing to me.  Consider yourself lucky that you have such a proactive doctor.  It sounds like you did not even know swallowing was an issue, what does that tell you.  You will be back to swallowing Ensures and trying other foods in “no time”.

 

Having the scan early, great, it will give the doctor a good base line of your cure and healing.  You may have a few hot spots, but that is to be expected.

 

Mucus and dry mouth are par for the course when you join the H&N club.  It gets better, you learn to live with it.  It makes the procedure of getting ready to go somewhere a whole new experience (remember protein drinks, remember water, remember Kleenex and on and on)

 

I woke up this morning, walked around, poured some coffee, filled a glass of water and when I looked in the mirror I saw a bold white streak of chalky residue running out of the corner of my mouth down my chin.  It was the remnants of a Xylemelts which had escaped and made a drool for it

 

Don’t worry too much, you are most likely abi-normal (like the rest of us).

 

Matt.

phrannie51's picture
phrannie51
Posts: 3726
Joined: Mar 2012

"check face" to your new to-do list....LOL.  I'm finding that these days, I must do that before I answer the door, get ready for the crews to check in in the morning, before I go even to the grocery store....there is usully something lingering on my face that I'd wished I had removed before seeing the public.  So hard reverting back to babyhood (you should see the mess one hershey's kiss can cause!!!)....it's down right embarrassing....Embarassed

p

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

OMG, Matt and Phrannie!  Ya this is one of those things I forget to do.  Had to give up Hershey's Kisses for that very reason.

Deb

 

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

I had trouble with the swallow test too, in fact, I never actually passed one. Finally, my surgeon said his speech therapist was the best judge, she had me try a couple of foods and said I was fine. I was eating and visiting nurse freaked and said I was aspirating. Speech therapist said no I wasn't and to continue to eat. Well, that was a year ago but I recall the emotional roller coaster that it created for me. Also, my 87 year old Mother was said to be aspirating last October while hospitalized and they were adding thickener to everything, a matter of a few days and no trouble since. Certainly, don't make light of it but know it can be dealt with. Put that birthday cake in the freezer, it won't be long before you can enjoy it!

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

J,

For some, a birthday is not always the best day of the year. I know many people that hate the fact that they've grown another year older. In our situations, another year is cause to celebrate regardless of the current circumstances. I spent my 54th 3 days out of surgery but was still thankful as I survived two heart attacks, triple bypass surgery, cardiac stent procedures, a tonsillectomy and a selective neck dissection/biopsies/lingual tonsillectomy all since 2007. Despite feeling like roadkill, I had cause to celebrate the fact that they got "Jack" out of my body. 

You've made excellent progress. This is just a small setback that with therapy you will overcome and be experimenting with more foods in no time. If it were me, I would be glad to be getting a scan 6 weeks out as opposed to months out. Depsite the scan anxiety, knowing sooner rather than later what's going on can offer some relief from the stress of worrying about it. 

Feeling down is totally understandable under the circumstances. Just don't hang out there too long ya hear? Vent as often as you need to.  Happy Birthday and congratulations on your success as one who is living and not just surviving. 

"T"

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Happy birthday, dude!  You may feel like shiitteee bu7t you are HERE in spite of cancer and have a very nice stretch of paved road ahead for many more birthdays. That is a good thing. Today will pass and the daily grind of the treatment regimens will soon reassert theselves as top of mind.

If you are following the rather spirited discussion on PEGging up, forgive me if I interject just for a moment my rationale, with NO disrespect to you. Remember I dun't know shiite I am talking out my assss... Your situation, to me, supports what my surgeon really presses me on and that is to swallow and take food orally with great dilgence and committemnt before throwing in the towel and PEGging up. My rationale is the more one consumes orally the less such problems like aspiration are likely. Also, there are reports of long term swallow issues right here: Michaek and Rachel, for example; so again, the best odds play to me is to force the swallow and choke down fluids and BLENDERIZED food down orally until you have exhausted all options and the weight and hydration begin to reach levels where you need to tap out and PEG up. I have NO intention of consuming anything solid, only liquid form.  The Vita-mix should soon be here so I can start creating liquidized concoctions in addition to the liquid protein shakes I am already starting. That is where I am. So sorry for the slight hijack; it is just I am really pumped up on this Peg/noPeg thing.

Don

personal blog at http:beadown.cognacom.com (please join)

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

J,  first of all HAPPY BIRTHDAY!! Sending positive vibes and wishes for all that brings you joy and a healthy next trip around the sun.   It would have been kinder if the swallow-study results had waited until after your birthday so that you did not have to avoid celebration food tastings. I would be willing to bet, since you have been making such good progress with drinking ensure and trying new foods daily, that your therapist will help you continue on that encouraging path to normalcy.  As for the early scan...  I, too, was concerned when my son's Onc scheduled his first post-tx PET scan only 6 weeks after his  last rad/chemo.  My expectation (from reading what others on this forum experienced) was that the usual post-tx PET scan would be scheduled no sooner than 3 months and more likely 6 months post-tx.  I had read that scans done too early might show "hot-spots" that were related to NON-cancerous residual inflammation that would not show up if the scan were done several months later.  Those concerns turned out to be a needless source of anxiety.  My son's treatment team is among those who likes to take the earlier scan approach and it turned out to be a wonderful source of reassurance since the early 'six-week-post-tx' scan showed no evidence of disease from nose to toes and no "hot-spots" anywhere.  Your doctor apparently subscribes to the "early scan" school of thought and you should not read anymore into it.  The first weeks post-tx are among the most difficult and those on this forum know how hard it is to keep your spirits up.  You are being lifted up in the prayers of many good people here and tucked in caring places like 'phrannie's pocket' so try to draw strength from the positive thoughts coming your way.  **Birthday Hugs**

katenorwood
Posts: 1829
Joined: May 2012

Happy Birthday Joe !

Man this stinks on your b-day !  I would be down too.  But try to think positively, and keep the bad thoughts at bay !  I wonder just how many of us has aspirated and not been tested.  As far as the early scans go, some onc's do this.  (maybe early due to your swallowing issues ?)  Will be sending positive thoughts and also keeping you tucked in my pocket !   Katie

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

First Don, my history is I didn't use the peg until I just couldn't swallow anymore, even then I swallowed water continuously to insure that my muscles didn't atrophy.

As for the scan, it's not a PEG but a CT (w/contrast that I hope I can swallow) and it's purpose is to see if there are any masses that escaped chemo and the Rads.  I agree that the chances of that are very small given the induction chemo and the Rads.

Last, the therapist that did the test told me she thought that the aspiration is slight and might be caused by the swelling in my throat.  So I go to see her tomorrow and we'll look at the pictures and talk about what I need to do to get back on track.

I guess I just can't get used to the three steps forward, two steps back.  I felt so good over the weekend and up to yesterday, everything still hurt but everything was better.  Today I just feel like crap.  Tomorrow is another day.

Thanks for all the good wishes.

J.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Birthdays - we get to have them! Birthdays are a wonderful thing!  I love birthdays!  Here's to many more for you.

Deb

Hard12Find
Posts: 207
Joined: Sep 2012

J,

I think the fact you could swallow anythingat 6 weeks post is quite an accomplishement, I am 12 weeks post, and just barely getting to soft foods and soups. Anyway, the post treatment scan is all part of the bigger plan so try not to let it get to you....Happy birthday and many returns....

Jim

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

HAPPY BIRTHDAY!!!!

J,

I get the disappointment on a birthday thing, we found out Dan had cancer that night on my birthday, I want to move mine, but then again if they hadn't found it, or misdiagnosed him, he might not have the opportunities I hope he has today.

That said, kind of nice that your doctor is giving you professional photographs for your birthday! A very expensive gift too! ;)

I am sorry you are plagued with too much help. I bet your swallower is just healing and might be acting up, but this too shall pass and be behind you before you know it. You did so well drinking and swallowing - could it be over use? And this short hiatus will soon be short lived.

I'll say a little prayer that they are full of hot air.. and mark your calendar busy on your birthdays.. no more doctors appts on birthdays... heck I won't be answering the phone either come October!

Many, Many, More,

Kari

yensid683
Posts: 227
Joined: Apr 2012

I had the PEG tube and it was just a couple of weeks before my throat was too sore to really eat anything beyond liquids, and not much after that that any swallowing was a new experience in pain and discomfort.  At the same time, I was told that if I didn't keep swallowing I could lose the ability to do so and be stuck with a PEG for the rest of my life.  My wife, patient and long suffering caregiver, would almost brow beat me into swallowing.  She did jello is small dixie cups that was only a couple of spoonfuls, but the cool and the slippery worked well and surprisingly, during the darkest part of things I could still taste the grape flavor - only a hint of it, but taste it the same.  Whole milk worked too, ensure not so much.

I wouldn't sweat a scan, it was my biggest curiosity to see if they'd gotten it all after I finished with rads.  Three weeks post rads and the ENT snaked the camera through my nose and I was thrilled to hear him say that there was no trace of the primary tumor!

I hope that you too will get to hear good news on the scan, anything they see hopefully would be healing tissue, and oh, happy birthday!  Even one more day with those we love is worth all that we go through.

 

Peter

patricke's picture
patricke
Posts: 468
Joined: Aug 2006

Hey J, the process tends to be back and forthward at various times, it's part of the journey.  The swallow study news is, of course, tough to, ugh, swallow, but wait to chat with your therapest about what this means before jumping to conclusions.  And the scan, I suggest you look at as a positive on the part of your doc, in that, hopefully it will be a big fat NED, but in the event that it isn't (wash my mouth out), better to catch it early.  I know that these situations can be very, very discouraging and downing, but I encouraging you to very, very consciously keep your head in the positive zone, take things one day/moment at a time, and very consciously self-talk  yourself into avoiding the quicksand ponds of catastrophic, negativity thinking (easier said than done, but you can do this) (smack down the D-Monstere).  I'm glad that you posted, this is indeed a great place to vent and share, but you might also consider sharing these thoughts and feelings with those closest to you, as they probably already suspect your thoughts and feelings, and would probably appreciate and support your sharing, at least, that is what the case was and is for me; I'm just sayin...................*  I and I do also say, Happy Birthday J, and I wish you many more!

PATRICK   

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

How the hell are you...Tongue Out

Sorry about the few steps back, but don't let them get you down too much, a few steps back aren't uncommon and I guess keep us in check at times. Hoping all of your issues will clear up and be resolved soon, and by this time next year, this will all be a memory...not necessarily a great one, but at least one...

Happy Birthday..., I just had one of those myself...

Oh, ya..., I have a CT tomorrow myself...

Cheers,

JG

ditto1
Posts: 630
Joined: Mar 2012

My ENT did a PET around 9 weeks after tx ended and PET showed hot spot, and I was having some mystery pains, so she did a biopsy under anestesia, thank God she saw no cancer and NED stayed in place.  Seems some let hot spots ride themselvs out and others want a looksee.  It was done in January so I lost the luxury of 100% coverage since it was a new year, thus new deductibles and new bills, but at least it gave me peace of mind.  Hope you get everything under control soon, I was dx last April not on my birthday but just a few weeks before, so not sure if we celebrated or not.  This April will plan on cake and ice cream to celebrate 57.  So again Happy Birthday and look forward to many more.

Jama's picture
Jama
Posts: 12
Joined: Feb 2013

I wish I could help but alls I can do is pray for you.  My husband just tells himself that tomorrow is another day and it might be better than today.

Gods blessing to you and your loved ones.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Even if you did get disturbing news.  Here's hoping the aspiration disappears with the inflammation.  I know that I got some very useful exercises from a speech therapist that I believe really helped with my swallowing 

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