Marcy is so weak and in so much pain, it is unbearable to see her this way. Her tumors have grown too much for her to receive IMRT now.
The tumors on the outside of her face as well as the tumors inside her face and neck are all infected. They have her on 4 different antibiotics at this time. Marcy is so scared, she wants to eat so bad but the chance of her choking on anything is very real. She had a episode where she couldn't breath after drinking water so she is terrifed. She has a oxygen mask by her bed as well as a suction device so she can clear out some of the mucus in her throat. She doesn't want to die she just wants to go home and beable to be with her daughter. I am there for her but watching her cry and so weak is heartbreaking. I know I have to be strong for her, but God is really pushing it here. I don't understand why God would let such a wonderful person suffer so. We are trying some herbal remedies at this time for our hope and Marcy is clinging to that. Please pray for Marcy. They say the more prayers the brighter the beacon of light for the angels to see.

God Bless,
Michelle

God Bless both you and Marcy. There are many people on this board that will say a prayer for Marcy and yourself.

Take care my thoughts are with you,
Dinah

Michelle,

I will keep Marcy in my prayers. Just be with her and be there for her. My heart goes out to you and your family.

Danielle

God bless you and give you strength, Michelle. And I pray that Marcy has relief from her suffering.
Peace
Judy U

Michelle,

My heart goes out to you and Marcy and also her daughter. I am so sorry that I have no words of comfort for you. I, too, was unable to understand why god would allow someone to suffer so. It is horrible enough to die so young, but to have to suffer such agonies is just beyond understanding.

I know we have gone over a lot of this before, but be sure Marcy is getting enough pain medicine. As for the eating and drinking, I remember Heather wanted to drink water so badly, but couldn't. We did give her small ice chips to suck on sometimes. It seemed to help a little. Marcy should just rely on her PEG for I'm afraid regular eating will not get easier. If the tumors grow as Heather's did, there will be too much swelling and pressure on her throat for it to be possible.
Is she taking turmeric? If not, you should consider it. It is a long shot, but it might possibly shrink the tumors a little or at least slow their growth. Enough to ease some of the pressure maybe. Again, it is a long shot, but I can't see how it could hurt to try.

I forget if you said she is having any chemo. If not, why not? The chemo did help Heather for awhile. It actually gave her a few more months. Although, to be quite honest, since those months were pain-filled for her, I'm not sure if it was worth it. But if I remember correctly, Marcy doesn't have as many issues as Heather did....trach, fistulas, stomach problems and spinal collapse. She should be able to tolerate chemo better. If she has already tried several chemos, please excuse me for bringing it up. I couldn't remember what treatments she has already had.

It may not matter too much right now, but if Marcy does succumb, please be aware that although it will be rough at first, her daughter will adjust better than you might think. I had heard it said that young children bounce back quite readily after tragedies and I now know that to be true. At least that seems to be the case with Heather's daughter. We are taking her for grief counseling, and the psychiatrist thinks Cati is handling it very well. She doesn't see anything in her behavior to be concerned about. She probably didn't even need counseling, but I wanted to be sure she wasn't bottling her grief up, because I knew that would cause problems for her later.

Please know my thoughts are with you and I am still hoping for a miracle for Marcy. Please try to take care of yourself, too.

With love,
Rosie

Rosie,
I do not know if Marcy is taking Turmeric but I am going to check tonight.
I am sorry if I am causing you even more pain by having to retell the story of your beautiful daughter Heather. Marcy was only on chemo once, that was when she was having her radiation.
They are talking to Marcy about a trach at this time but Marcy does not want that yet. For this day she feels somewhat safe with her oxygen.
I am very frightened to hear you talk of spinal collapse. That can happen? Then what? They told Marcy her C1 and C2 verterbra are 1/3 tumor now. My God.....
How old is Cati?
Thank you and everyone else for their support.
Michelle

Dear Michelle,

It is diffucult to express my sorrow over Marcy's condition. Please know both you and Marcy are in my prayers. If you need to vent please email me anytime. I'm only 75 miles from you.

Best wishes and please keep us posted.
Love, Daniel

Michelle,
You and Marcy are in my prayers. Sometimes it seems so overwhelming to deal with the pain or as a caregiver seeing the one you love so much suffer. I can only tell you that everyday I ask for strength, courage and complete healing for my husband. God has the big PLAN and whatever HIS will, that is what will happen. But there is so much power in prayer. Also, we have a great support team from our church Bible study and from family. Family is a few hours away but can be here when needed. You need a great support team of friends to lean on, especially those who will pray for you. God has lots of promises in his Word, cling to them!!!
Love,
Debbie

Michelle, since you are relatively new here, you haven't been through all the bad blood postings and negative private emails between people who are strong biblical/religious individuals and those who are less so. The attacks have been painful to many on both sides of the religious spectrum. We've even had someone here who has become a much beloved participant get jumped on for expressing her Buddhist beliefs, in private emails from Christians. I was copied on them and to be honest I was appalled. Obviously the height of non-Christian behavior. The board ebbs and flows with postings from people of all beliefs and that is how it should be. Atheists and Born again Christians all get oral cancer, it does not show a preference for one or the other. As much as possible after all the turmoil that the board went through over this, I always advise people to follow the lead of the original poster you are responding to. If they exhibit a strong religious position in their comments, then it is appropriate to respond in a like manner, which you have. But do not be surprised if some people do not respond well to your signature. This is a public board and I, nor OCF, have total control over what people will put up, be it praise or attack of another poster. Your strong religious belief that God is in control is not universally shared (true, not true, correct, right or wrong, is not the issue). The rule of thumb that has worked out to smooth things over between the factions that believe one way or another is that if the person that you are responding to in a compassionate way has not discussed God, Buddha, Mohammad etc. than in your postings to them it is appropriate to leave religion out of your support. If you put it in your signature, that negates the ability to respond with a non religious tone. If they have mentioned prayer, God or whatever, then as you have, responding in a like manner is more than appropriate. I only mention this as I don't wish to see these boards become a religious battleground again when what we are all here to do is share information and insights, ask for help when we need it, rant when we have to because it is a safe haven to, and even offer emotional support religious or otherwise when it is appropriate. I respect your strong beliefs, but my perspective is not universally held. I shudder to even put up this post publicly least I start this nasty, and often ugly debate again. You would think that people caught in the middle of a deadly battle, or having come out of one with this cancer would not have the time or inclination to delve into theological argument. But that is apparently not the case. We try as much as possible to keep these boards centered on their purpose, and that is the exchange of information and support that will benefit others related specifically to oral cancer. It is just a word to the wise.

When this killer invades our lives, destroys our loved ones, crushes our hopes, leaves us in shreads emotionally we all need a belief system that helps get us through it. What Rosie, has been through perosnally, what Heataher endured, what Marcy is going through, none of this is fair. But it is real. Whether this is part of God's, plan, a scientific non religious event, or the random act of life, we can not know. But we all share in the pain of any that are lost or in severe suffering. Marcy is in the prayers, or positive energy, or thoughts, from all here who know what it means to suffer.

Michelle,

Cati is 7. She was 6 when Heather died. Please don't apologize for causing me pain. It is my choice to continue following the forum. Sometimes I stay away for awhile because it is painful, but I always find myself wondering how everyone is doing, so I come back.

Spinal collapse is my wording. The term may not be medically correct. The tumor actually destroyed Heather's 5th vertebrae. With C-5 gone, her spine started to bend (or collapse) and the spinal cord was pinched between C-4 and C-6. That was what caused Heather the terrible pain that the morphine couldn't control. It also caused the paralysis of her arms. I'm sorry I even mentioned it, because if Marcy's tumors continue to grow, I would expect the same thing might happen to her. Although I don't know what areas C-1 and C-2 control. C-5 obviously affects the arms.

I asked if Marcy was on chemo, because sometimes it can slow or temporarily halt the tumor growth. The Irinotecan seemed to halt the growth of Heather's spinal tumor, at least for a few months. I think it was paired with Docetaxol. At this point, though, it would only be a palliative measure. It won't be a cure. And with all the discomfort that chemo causes with nausea and such, it may not be worth it.

I don't know how much you and Marcy have discussed and it is certainly not a pleasant task, but you need to know her end-of-life wishes. Not just the big issues like whether or not to go on life support, but other things as well. For example, there were some personal possessions that Heather wanted to go to certain of her friends. When she mentioned this to her husband in May, though, he couldn't handle dealing with it and for some reason, she didn't tell me or her sister. Anyway, when she started improving, I guess she thought it not important anymore. Then she started to get worse and by the time she finally accepted that she wouldn't get better, she was so weak and in so much pain that it was hard for her to write much (and she couldn't talk) and she just didn't want to bother. It's not a real big deal, but we will always wonder what her wishes were and we are sorry we can't carry them out. It will be extremely painful, but you really should discuss such things with Marcy while you can.

Take care,
Rosie