As promised, I will update this thread when I receive any emails from Donna. Her Mom, Rose, as at Penn and has started her brachytherapy.
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7:11 PM
Hello.
Mom was in surgery for 4.5 hrs today. Her implants went well, they put in the trache and she had to have a partial neck dissection--I am happy they did that, kind of a peace of mind, especially since he found 4 hard nodes, which he explained were dead cancer and shouldn't be left there. I asked about her heart, he said that there was never any evidence that her heart was ....stressed--I think that is what he said. As he was speaking to me my heart was banging in my chest. We will be able to see her after she gets out of recovery which should be in about 2 hours.
Thank you for all of your prayers and thoughts today. I don't think I could have made it through all of this without you all of my friends and my family at the OCF. You are forever in my heart, and mom's.
Much love to all. I'm going to ask Jerry to forward this as I can't log on to OCF.
I'll catch you ladies on the island.
Margaret, I will try to call you tonight. My cell died and I don't have a charger with me.
Happiness is all around me.
Peace and Love,
Donna
explained were dead cancer and shouldn't be left there
...someone please tell me what this means...maybe necrosis?
Thank you Jerry.
Mom had a good night last night. Today she is a little less swollen. Her coloring is a little better. Her RO was in and said he thought she was looking fantastic....I have to be honest and tell you, I was wondering if he was looking at the same person! Speaking of how she's looking....she's getting up today for at least two walks. I'm afraid for when she sees herself. Do you think it would be inappropriate for me to tell her that she should focus on her health, her face will look better soon. That sounds so harsh. I need to talk to her before she sees herself, and I want her to look at it from a positive angle.
Thanks. I'll try to get back on soon.
Laugh and tell her her face hasn't looked so cherfully, healthily chubby in a long time!
Someone said that to me in CA at Easter, having not seen me for 9 months, and before I had a diagnosis on my jaw---it made me laugh, then I explained my fears!
Same sort of principle as when I'm 'down' about my blood counts, the nurses tell me it shows the chemo is active!
Brenda
Well...I said something on the light side....
I couldn't decide what to do....I finally went with my heart. I told mom I thought I should explain to her what she looks like prior to her seeing herself. She looks awful but I didn't say so. Instead I said that where all the catheters are gathered together kind of resembles a small whisk that has been jammed halfway up into her chin. I told her that her neck dissection looks bitchin! She looks like one of those freaky kids at the mall that do a lot of body piercings. It runs from ear halfway across her neck and it's shiny....Casey(my golden retriever who loves jewelry) will go nuts! Her NG tube is yellow and is stitched into her nose hanging down her face. Her neck has a white band wrapped around it with a gaping hole in the middle. Well, she didn't look happy. I told her to (with a smile) 'suck it up'. I explained that the docs think she looks fantastic and great...can't help wondering if they took a special class in school that taught them to be able to speak like that.
She looked at me and tried to smile. She covered her trache and said, "I love you."
She probably won't remember our discussion in an hour. Honestly---it does look like a whisk! very upsetting.
Donna,
You are such a jewel and your mother is fortunate you are there. I can feel your pain as you are describing looking at her. I know it must hurt and I am really sorry both of you are having to endure this.
Wishing you only the best.
Ed
Thank you Ed.
Today has been an upsetting day. She's just having a bad day all around...here come to find out that she forgot she had surgery on Monday! I imagine it's the morphine???
Not only is she incredibly uncomfortable, the nurses are extremely uptight today. Not at us...the halls are quiet, they are not as chatty as usual. Kind of makes me wonder which boss is in? And why can't that boss go back home? I also think one of the girls was fired today. I really wish that the patients and families didn't have to feel their burn--if you understand what I mean.
My father and sister are coming tonight. They are staying over. Vicki will stay in the room, dad will come back to the hotel. I can't wait to "go home" tonight. It's been a long, dreary day.
Hope everyone is well.
Donna
Donna
Morphine does play with our minds ... I am glad however to hear that so far things have gone well for mom . It is to bad that things are going "down" at the Hospital and you and the other pts have to deal with the effects of it. Hopefully tomorrow will be a better day !!!! Just know that you are all in my thoughts and have been for a while , even though I havent been around much I have been thinkin about you !
Shar
Hi Shar!
I've been worrying about you...was so relieved when I saw that you had posted somewhere the other day.
Today everyone (staff) here seems much better, more like themselves. Mom is disappointed to be leaving them, as they understand her needs and she can kind of do like a sign language with them. Not to mention, she really likes them all, and you can tell the feeling is reciprocrated (spelling?).
She is going to another wing in a little while, she'll be stuck in a room for 3.5 days. ALONE. She can do it. She can clear herself, clean her trach, swipe her lines, feed herself. She just doesn't realize it yet. I always think of Winnie the Pooh, somewhere along the way he says something like, you are stronger than you think you are, braver than you think, and wiser. The strangest things I remember.....
Today will be the first day I've been home since Monday early am. I haven't seen my younger daughter since then. My older daughter came down the other night-she really lifted mom's spirits.
Why is it that I feel so damm guilty leaving my mom? She keeps asking us to stay at the hotel where I have been staying but it's not really warranted. I don't want to lie to her, but maybe to calm her down I will. Afterall, when she is through all of this, I can tell ehr otherwise. Or maybe never....is it really that important?
Shar-
a while ago you offered to send out a copy of your presentation, is that still available? I really wanted to ask you for it, but so much was happening.
Here comes her doctor...I hope I don't cry!!
Love to all,
Donna
Donna
Don't feel guilty ..you have done soo soo much for your mom . and you too need a break and you need you see your daughters too !
I love WINNIE THE POOH !! I AM SOO Happy you said that ! and Yes The offer still stands I will send you a Copy of it .. I only wish I could send it so you could hear the music ! it just makes it that much more effective. I will get that to you in an email! I am going to send out hard copies on disk as well to those who would like them ..but my aunt is going to try to help me try to get the music on it as well !
Please go enjoy your daughter and Give your Mom my BEST !!!!
Shar
Hi Donna,
I agree with what Sharlee says...............please don't feel guilty. You have been such a fantastic caregiver to your mother, rather than feeling guilty you should be treating yourself to something special.
Love,
Minnie
Hi Minnie,
I just read your update
fm the care pages. I wish I could do something to help you.
I came home Friday afternoon by train, sick as a dog. I'm glad I came home, Jackie, my older daughter is sick as well. We went to the doctor together yesterday and were given meds. I seem to be a little better but Jackie is still down.
I haven't seen my mom since Friday afternoon. I'm afraid to be anywhere near her. They are treating me for bacterial, but for all I know it could be viral and the meds may not be helping.
I've called the nurses station once a day, my dad and sister are there at different times. Dad goes 2x's a day. I think Vicki may be spending too much time in there. More to be worried about. I know that there is a website about being around someone who is radioactive, just been to sick to look for it.
Going back to bed.
I made some new friends at HUP the other day...all three patients were head and neck cancers. I told them all about the OCF, I should look to see if they have signed on yet.
It's amazing, we are always over our heads in this area, arent' we?
Minnie--
I'll keep you in my prayers. I know the feeling all to well about the let down of not having the surgery when expected.
Love,
Donna
Hi Donna,
Must be bug season because everyone around me is sick. I ended up spending most of the day and night in the ER getting some IV fluids and getting my fever down. I feel pretty good right now. Tough to get my family to understand that I CAN get just a normal sick like other people......it doesn't always have to have something to do with cancer. So my whole house is sleeping right now and I'm wide awake, enjoying the quiet with my most loyal friend, my dear dog Lucy. She won't leave my side now, she knows something is going on.
Keep us posted on your mom, she's almost done Donna and then it's all uphill!! By Christmas she'll be ready for mistletoe and eggnog.
Love,
Minnie
Donna,
Didn't know you were sick. Left you a voicemail today on your cell. Hope you and Jackie are feeling better and thought that you might see this before you check your cell.
Please get in touch with me tomorrow.
Jerry
i HOPE YOU ALL FEEL BETTER !! I love the FALL but I hate SICK SEASON !!! That is one thing my GP is worried about with me going back to work at a school..with my immune system ( not being at its best ) ...But he told me today I look better then I have in a long time ..then he said actually I LOOK WONERFUL !! Then he said the risk of me gettin sick was outweighed by the benefit of me being mentally better !!!! LOL we will see what he is saying when I am in there sick !!!
I really do hope you all feel better soon I hate being sick
Shar
Hi Guys,
I am feeling much better--thanks. Jerry, I couldn't call you back, i had no voice earlier in the day. Jackie is still feeling down and it seems Jessie is going to take her turn next.
Minnie, I am glad to hear you are feeling better...though, I have to admit I am concerned as your family is, what if we give this to mom?
I know that it doesn't always have to be related to cancer, but for some reason that is the ugly monster thought that first crops up in my mind.
Shar--gotta love a doc telling you how wonderful you look. Attitude aides a lot in healing
My mom is having her implants removed tomorrow. She will hopefully feel much better. I haven't seen her since Friday, and I miss her so much. She called me from her cell phone today, unfortunately I missed her call as the men dropping off her supplies came at the time of her call. I tried calling her back but was unable to reach her. I finally called the nurses desk and her nurse, a great guy from what my dad tells me, went in and told her I was on the phone trying to call her back. She told him she couldn't find her cell phone. I was disappointed and so worried because I knew she would fret over not being able to call me. She does have the hospital phone but she is having a difficult time remembering things...numbers being one of them, I suppose it's the morphine. When she left the message it scared me at first....all she said was "Call me". It sounded so omnious-not her voice at all. I cried for a while. About a half hour after I had called her back my line rang and it was mom. She is so brave. Her mouth is so swollen and sore, and she called to tell me that she really missed me. She cried and told me how much she wants to just come home. She is so lonely. My sister and dad have spent way to much time in that room. My father goes in and holds her and kisses her. I am so afraid to seek out answers about what that could bring. My sister said she has spent too much time in there, mom has touched her at different times. I just don't have the nerve to think about that too hard.
Tomorrow will be so hard on her if they don't release her. I pray that they let her come home with me, she will be so heartbroken, as will I, if they say no. I will understand of course but I know she won't. Did I tell you we were on the phone for 22 minutes? I spoke more than she did, but I left a lot of time open for her to get her thoughts together and her words out. I have found that I have become a much better listener than I have ever been in all my life.
I better get off and go to sleep. Still feeling a bit punk and I have so much cleaning to do prior to bringing her home. You would think after having a cleaning business for a few years I would be better at this, but I just don't have it in me. I hate that I lost almost 4 days to being sick. I wish I had listened to my body whenit was screaming for a break!
Love to all,
D.
Oh, Donna,
Do look after yourself!
Even when you seem to physically recover from a bug, it can leave you feeling low for quite a while--and you were already running on low.
I hope everything goes well for your mom and you can get her home to start healing soon--but not before the docs think she's ready.
Take care of yourself,
Brenda
Thanks Brenda. How are you feeling?
Hi Donna,
At the moment I feel like I'm on a bit of a pendulum--physically, since the blood transfusion, I feel much better--enough energy to do bits of housework and shopping now, not so exhausted walking---so that's all EXCELLENT news.
However, my lip, inside is hurting a lot and feels swollen.
Emotionally---initially relieved that chemo was 'over' so not the constant round of blood tests and infusions and plummeting blood levels.
Again, it's 'however'--back in the loop now of waiting for next 'Review' next week after CT scan yesterday. I feel if there's a new/more lesions, or existing tumours have grown, I might be given a shorter time scale.
I so want to go and see my daughter in California--and am going to do it without insurance, if necessary. Am also going to do it Direct, so no stop-over in Philadelphia, but means I will have to be more careful about DVT/infection etc., but currently FEEL I can handle that.
We have 2 weeks holiday to come, for the first time of being able to afford it and go together because of work, at the end of October, then another week in November.
The doc did clear me to go about a month ago, but now I'm doing the thing we all do which is worrying about this next review on the 4th October, so daren't plan in advance--I know it's crazy, but it does just feel like a see-saw.
Sorry, I've whinged when the rest of you have so many more 'real' issues to deal with, but the 'how I feel' just sort of crystallized tonight!
Hope the day goes good for you and your mom--or as well as can be expected under the circumstances!
brenda
Donna,
Don't worry about not calling back. I understand and this is a good way to get the info I'm seeking.
As soon as she's home, things will start getting better. I'm sure of that. You do need to take better care of yourself and getting sick at least gave you some down time from the running.
I'll be in touch and I'm hoping by next week Rose will be up to a visit from me.
Jerry
She's home and no real time to post. Addicted to OCF! Had to stop and get my "fix".
Quick note-
Mom was released yesterday, brought her home. She cried when told she can come home. She sat awake enjoying every moment of the ride--even the jerky drivers!
Hey that's great news.
Tried your cell today...no answer...didn't leave a message.
I'll try to reach you tomorrow.
Jerry
Jerry,
It's been really tough the last two days. I just realized that I don't know which day that changed mom's patch at the hospital! I think it was over the weekend. Probably was due today. I'm exhausted but afraid to go to sleep because mom went to sleep while I was at back to school night, she's still sleeping. I woke her briefly and asked if she needed any pain meds, if she was hungry, needed to clean her trach? She said she just wanted to sleep, so I let her. Now I'm sitting her waiting for her to wake up in pain, or upset in some manner. I wish I were more adept in handling all her needs. I feel so bad for her, I screw up and although she has tears in her eyes, or cries out loud, she is still reaching out to me as I am tearing up....ever the mom.
Dad is coming down with what Jackie and I had, Jessie is still fightin a cold. I hope omnicef is strong enough to protect mom.
By the way, I mentioned to mom that you would like to see her someday soon, she smiled and wrote she would like that....and then went on to cry.
The crying...I knew that we would go through this stage again with this tx, so why am I so concerned? I imagine her body is still reeling from her three surgeries on 9/17.
I am suddenly tired. Good night all.
Donna, bless your mom, she has been through so much. Please take some comfort in knowing that it WILL get better, it DOES improve. I remember my darkest hours during my treatment. I'm hoping to do better this second time around, since I already know what to expect!
Please tell your mother that she has done such a great job, putting some of us "young ones" to shame. I also hope you and the rest of your family get healthy again soon!
Love,
Minnie
Hello Minnie,
Hope this finds you doing well and in good spirits.
I know that it will get better but feel so in the dark about these last procedures. I seem to be grasping at any idea that seems like it will help. I've read and learned so much here that I feel fortunate to understand some of what is going on. Everyday I am grateful for this wonderful board, I know I would have been drowning if I didn't find the OCF and all of you.
So many people here are inspirations, and I refuse to give up trying hard to be mom's cheerleader, nurse from hell--the one that just started and has no idea which end is up at times and mostly trying to remind her to fight everyday because she is so loved.
I ended up taking her to the ER today. She felt like she wasn't able to really breath and her neck began to swell up. I called her surgeon and RO and was directed by both to the ER. I really wanted to take her back to the CCC, I can't beleive I just wrote that!, but I really would have felt better for them to compare the reports to previous ones. They did basic metabolic panel bloodwork ups. They said everything was normal but as I am looking at this report which I asked for a copy of, I'm not so sure. I should probably post all of this somewhere else but not sure if I need to start a new thread?
With your neck dissection, did you ever feel swelling so much that it made you feel as if you couldn't breath? She also had reddish/purple color around her neck, and she was sweating at times. It has been such a nervewracking day.
I need to go and research what these tests are, for instance, blood urea nitrogen. her reulst was a 4, range is 8-20. Creatinine 0.7, range 0.6-101, glomerular filtration rate 90, range 97-137.
CBC tests show:
red blood count 3.93, range 4.10-5.70
red cell distribution width 15.9, range 11.5-14.5
I am going to try to figure all this out, they seems out of range and were not addressed.
Also going to fax reports to RO and surgeon.
I hear mom calling. I hope I get more than 2 hrs sleep. Have a nice night