Just an update on my brother's condition. The doctors at MD Anderson will be doing surgery to remove the right half of his tongue, the right floor of his mouth and the right jaw. I guess it sounds funny, but we are so grateful. They said it will be a difficult surgery, but they should be able to remove all the cancer and will be doing reconstructive surgery at the same time. This is the best news we've had in a long time, providing true hope at Christmas and for the New Year and perhaps many years to come. The surgery will not be until the end of January. I know the recovery will be painful, but he is in so much pain now I can't imagine it being worse. He never complains, but doubles over holding his jaw. The pain is constant and has been for months. He can only sleep 2-3 minutes here and there because he has began violently jerking in his sleep and has hit his head several times and well as bitten his tongue. His hands are beginning to tremble more and more. A couple of days ago he was watching a rodeo on TV and when the bull spun around it was coming right at the camera and David said he felt like the bull hit him - hard. Over the past two days he has had several of these incidents - not directly related to the television - but where he felt like someone or something just hauled off and hit him. His body even physically reacts to these "hits" by jerking back. I guess it is the pain medication he is on. The doctors did say it was a very high level. Has anyone ever experienced anything like this? If so it would be reassuring to hear from you.
Anyway, here's to all of you and to 2005. May it bring you joy, comfort and healing.

Hi Tonya
Thanks for the update, I'm just wondering why he has to wait until the end of January for surgery? If his pain meds are causing so many problems now, is it not possible to ask the Docs to move surgery forward? Please keep us up to date on everything and look after yourself too..
Sunshine... love and hugs
Helen

Well, the doctors had hoped to do surgery at the end of December, but have had problems trying to schedule the plastic surgeons and everyone at the same time. They said they would move it up if possible, but so far it has not been. He will go to Houston Jan. 10 & 11 for blood work and to meet with the pain doctors and others in order to prepare him for internal medicine. I'm not really sure what they meant by that, but I guess they feel they can afford to wait a month. They will also do some new type of chemo on the 10th. After somewhat questionable health care in the past (at another hospital), we are thankful to be under the care of these doctors. Thank you for your note.

Hi Tonya

Sorry your brother has to go through such difficult surgery but it is good that you have such confidence in your new medical team.

I guess the docs know what they are doing regarding the meds and what is available. The pain doc will help, I'm sure. Many people seem to suffer hallucinations etc with morphine-based drugs.

Wishing you and your brother a successful outcome from the treatment, love and light from Helen

Tonya, a prayer for you, your brother and your family. May you all be comforted.

Tonya,

I am so happy to hear the news for David and your entire family! I know the road ahead is not going to be easy but I am so encouraged they have given David a road to travel down. In my heart of hearts if they believed what the OKC doctors believed, they would not be putting him through this tough of a surgery and recovery.

The jerking you are describing is something I have seen in myself and others with certain kinds of pain meds, especially at higher doses. Demerol and morphine are the absolute worst for me. I have also experienced the jaws just sort of twitching sometimes which causes me to clamp down on my tongue. Have they tried any NSAID's such as Bextra or any muslce relaxants? Also, is David using the Duragesic patches or more morphine. If they could get as much pain controlled as possible with the patch and try something a bit longer acting for the breakthrough pain, it may help. I am sure the pain management team is very good but I just thought I would throw it out there. I have seen some pretty violent twitching, as I call it, from higher doses of opiods.

I am hoping and praying for wisdom and guidance for the surgical team and the pain management team to give your brother the most comfortable and longest life possible!

Ed

Ed,
Thanks for your note, although I hate that others have gone through this, your experience with simular problems is comforting. MD Anderson took David off the patches and changed him to a pill type of the same medicine, if I understood correctly, but kept the daily dosage the same. They have not tried any muscle relaxants, but I will have him ask about that at his Jan. 10th appointment. His current doctor said he expects David to make it 5 years and maybe more. We are so excited. Do you know of any good websites that explain such surgeries in detail? I tried to click on surgical/reconstruction on this site, but it will not open. I've tried it from a couple of different computers so I guess it is just not accessable right now. His doctor said it would be a difficult surgery but that is really all we know and I would like to have some idea of what to expect.
Thanks again,
Tonya

Tonya,

I know the jerks and movements your brother has experienced can be from different sources; the last time I had those reactions were to anti-seizure meds (Neutrontin and /or gabitril). A few less mg per day and they went away. Good Luck with your quest in Houston.

David

David,
I know he is on some anti-seizure meds. I will definately check into this.
Thanks,
Tonya

Well, I have looked over his medicine and am trying to research it on the net, but I don't see the anit-seizure medicine. He is going to ask them about it today. He is taking Lexapro (for anxiety); Coumadin (blood clot from port); Dilauded (8 mg every 4 hurs) Pepcid, Benadryl, Methadone (10 mg, 3x a day); Lidocaine; Xyloxylin and Senna-Docusate.
Thanks again,
Tonya