I woke up so startled this morning, I can't shake the fears that have settled in me.

My mom has been doing really well in all areas except for the lymphedema in her face, particularly her jaw area. I understand that from all the radiation, brachytherapy and the left neck dissection that swelling is to be expected. If I had to describe how she looks I guess I would say like Popeye, the cartoon character. She is in an incredible amount of pain, she is currently taking approx 20mg of oxycodone, fentyl patch 25mg changed every 72 hrs, neurontin 3capsules, can't recall strength and the bottle is by her bedside, advil-probably 800 mg a day.

At her last visit with the RO he said that left jaw had gotten dosed while she was in brachy. She had a mouth guard that she apparently removed more often than not while she was sleeping. She was pretty medicated and left alone in her room for the 3 days, the nurses came in and out fairly often and she said she saw her 'wizard', her RO - his name is Harry, and she's a huge Harry Potter fan-more than mostly anyone else. Anyway, he said that he would watch her, but I clearly could see the concern in his eyes.

I don't know how to express my fear here. I think it is seeing her face so swollen, and her great discomfort. She has been doing so well, and this week things have changed...even in the last few days she looks worse. I can't stop the tears now that I have opened up about this. I know how everything can change with this disease and it scares me beyond comprehension.

Is what she is going through normal? I have been trying to read the posts to see what others have gone through but I can't seem to comprehend what I am reading, extremely distracted-guess it's from my fears? I am going to send off an e-mail to her RO and call the office as soon as they turn on their phones. She doesn't have an appt today, but I have to drive to HUP anyway to pick her prescriptions-somehow the oxycodone one was lost...think I may need to take control over certain things again until the fog lifts. As I write this I am thinking how she was fine earlier in the week, and suddenly......

I need to gain my composure (sp?), I don't think I can until I understand more. I keep trying to get my game face on but it's not working.

Thank you for any info you can share on this, and as always, for your love and support.
Hope everyone has a nice weekend.

Donna, you must be on a complete roller-coaster of emotion!
If bad, I can take 1200mg Advil a day, on top of other pain meds.
I do know how frightening a swollen jaw looks--at it's worst, I had a huge bag of fluid both under and over my eye and could barely see, and the pain searing through to the skin made it agony to even wash my face. My school kids were backing off in fright.

Well done for sending that email and ringing the RO--you need some professional help with this one or you're gonna have a grim weekend.

Heaven knows how you carers keep going through all these months of high tension that is apart from the 'day to day practicalities' of sorting meds, visitors, appointments etc.
You deserve a medal as big as a dustbin lid, don't be afraid to cry when you need to and there's ALWAYS someone here to vent to!

Love Brenda x

Oh Donna . .. hang in there, ok? There is only so much you can take in and hold in before it just has to come out . . . you are doing everything you can for your Mom and I am sure any change is scaring you to death. Your poor Mom . . .THANK GOD SHE HAS YOU! Keeping you both in my thoughts and prayers today. LETS TALK THIS WEEKEND . . .I will finally have alone time to do so . . .

Love,

Laura

OK my dear,

Take a deep breath and calm down a little if you can. I too have been struggling with lymphedema in my face and my left jaw was pretty swollen for awhile. What I did was found a lymphatic therapist and she did wonders. Its just a matter of getting the fluid to learn a different path in order to drain. I also have a mask I can wear at night to keep the fluid from building up in my face. I know its scary to see her like that but once the fluid learns a new way to drain you will see a dramatic improvement. You will see an improvement also after just a few visits to the therapist.

Everything will be fine dear, this is just a minor setback. Feel free to PM me or email me if you have any questions. Ask your doctors about a therapist there at the hospital which is where mine was.

Billy

Donna, my heart was just aching while reading about the fear you are living. But after reading everyone's comforting words, and especially Billy's account about traveling down that road that your Mom is now on, I can only hope you found some relief in what was written, as I did, for you and your Mom. My hopes and genuine prayers are with you both. Warmly, JaneP

Thanks everyone. your words do comfort me greatly.
Mom came downstairs about 9:30am and her face was so swollen, far more than it ever has, she was in tears and soon as i saw her i was to....so much for being strong! It stayed that way for about 2hrs. My sister came and took mom to her surgeon's office, I had my older child at her doctor's office....I was a mess. I just wish I knew what to expect. I know, I need to get on here and read...

Donna

HOney
, I don't know if any of us can ever truley know what to expect . and I am soooo sorry you are going through this. I am glad you called the DR , you don't want to mess around with too much swelling in the face I do know that . and I have heard of therapsit as Billy said for the lymphedema. I too deal with it , but mine is all under chin and in neck. And I Am not scary looking ..( well I am , but you know what I mean ) medically . If anything dosent look or feel right then call and ask, it dosent hurt .. PLease let us know how she is ..and how you are !!


Shar

Donna My whole face was pretty swollen after radiation. I joked that I had chipmunk cheeks for months and it lasted for a long time because the lymph did need to find new paths to drain--and the radiation made things worse. I got done with treatment in June and in October of that year, on Halloween (over 4 months after rad ended), I remember joking that I was going to go as the great pumpkin because my face was still swollen and I had these two missing teeth right in the front of my mouth.

I was never in quite as bad pain as your mother, though, and I do think you're right to talk to her doc and make sure everything is being done for her that can be done. Your mon is lucky to have you. Be sure to take care of yourself and get the rest and support you need so you can keep supproting her, OK?

Nelie

Donna,
You have and continue to be an Angel for Rose. I have nothing professionally to offer you in this situation. I wish I did.
You have always been strong enough to be your mothers advocate and voice when she had none. I see you are still playing that role. It's OK to be emotional, concerned and upset. If we could everyone here would give you a hug and you know you already have our support.
Please take care of yourself so you can continue to find your inner strength to be your mothers Angel.

My thoughts and prayers are with Rose and you.

Hugs,

Mike

Donnarose
Lymphedema was bad for me as well, pain was great at times, I found a Lady that would massage that area for me, and the swelling did go down and the pain went away, you have to find one that has the experience with Lymphedema I went to one before I found this lady and I thought she was going to kill me, I still at times have swelling today I go back and have her give me a treatment ot two and it does go away.
Good Luck to you and your mother.