Jim had his PET scan on Friday...now it's just hurry up and wait. He is into his 12th week of Erbitux. His leg is still hurting a great deal and walks with a lot of pain. His RAD Dr. told us that he had expected the pain to be gone by now, but that some patients take 6 months to be free from pain. We went to visit his parents today and on the way home he told me that the pain he is feeling is tumor pain and that I needed to get prepared. He said that if the cancer is back, that he will escalate the remodeling of our house so that we can move in by September. Please pray for him as we await the news.

Paula

Paula,

I'm sending positive thoughts and energy your way. The waiting is the absolute worse. Here's hoping he's wrong about the derivation of the pain...we all heal at different rates.

Paula- my husband had a lot of pain in his leg when on the Erbitux. He walked with a limp at one point. He is now on a different chemo and the leg pain is gone. I really hope this is just a temporary side effect for your husband as well. I'll be praying hard for you. Hang in there and keep us posted.
Sue

Tell him not to be so negative. I believe our mental state can play a huge role in dealing with cancer. We all suffer till our results come back and logically it just doesn't do any good to be negative.

It doesn't sound like he's being negative David, it sounds like he's in pain. Constant pain can bring our spirits down and make it difficlt for us to be optimistic. Sounds to me like he is trying to deal with the pain, giving his opinion on what he believes the pain is and then making plans for the "worst" case scenario. I think he's being very realistic about it all!

I would be surprised if the pain in his leg is from a tumor, I had the majority of my pain in my leg, so let's hope his leg is fine.

Minnie

Thank you, Minnie. He is in excruciating pain and it has worn him down. We took a short trip over the weekend to go see my mom in Louisiana and on the way home today, I got very sleepy and asked him to drive...he did so for about 30 miles and had to pull over, because the pain was too much. He is used to pain - since he lost his leg at the age of 16, he has more than his share, believe me. The pain has definitely taken him down a few notches, but he says, not to worry, he is fine. We go back to the oncologist on the 16th. I think that is a long time to wait for results, but they told us that if we didn't here from them, then "no news is good news". He is going tomorrow to see if they can do anything for his prosthesis to give him some relief. I'm worried that the pain that he is feeling is due to him fracturing his leg, lifting his prosthesis as it in itself is very heavy. Please keep him in your prayers...

Results are in - it is bad news. The cancer has moved into his back. We go tomorrow to do an MRI to see how much has spread, then meet with the radiation Dr. then on Friday another MRI....I am heartsick. I don't know what to do or where to turn at this point. So I just type to my cyber friends. Please pray for us.

Paula

Paula, I am so sorry that the news is not good. I know that you are devastated.

I am praying as you asked....

Hugs, Deb

Paula,

I will certainly pray for Jim. My sister has stage IV breast cancer which has been in her back and sternum for about 4 years. She has been on chemo and like the Cheshire cat, the spots come and go. There have been months when there was nothing at all. I hope that Jim will have relief from the pain and a succesful outcome.
Malka

So sorry for the bad news. What do the doctors say about treatment?

Paula,

My heart goes out to you and your husband, you have been through so much. Praying for the best with you.

Deb

Paula, I am so sorry to hear that news. I am praying for you and especially that he will get relief from his pain. Nelie

Paula, My heart is aching for you. That kind of news is so devastating-I know. How is your husband handling the news? They can be so strong it almost makes you wonder why YOU are upset. I wish I could say something to ease your pain. Know that there are people in the same boat and we can all paddle together. Best thoughts are going out to you and your husband. Sue

We just got home from all the PET's and meeting with the RAD Dr. Basically - the cancer is all over Jim, now. In his ribs, sternum, left femur, shoulder blades and up and down his spine. I am so upset - have been crying all day - the waiting rooms are so lonely and they treat you like a bunch of cattle. Jim of course is his stoic self and doesn't act like anything is wrong. You are right, Sue, he is so strong and I wish I wouldn't have crumbled like I did. They will radiate his back on Monday to give him some relief, and I'm sure they will hit him with some high power chemo - what are the side effects of Taxotere? Anyway, thank you all for your prayers....we need them.

Paula

{{Paula}} <-- that's a cyberhug. I have no words to help with such devastating news but know that you and your husband are in my prayers.

Nelie

Paula,
I am so sorry that you received such a report. G-d willing there will be releif for Jim's pain. Often we who are physically undergoing these ordeals accept whatever is necessary and do not realize that our family and friends are also suffering because there is nothing they can do but sit and wait and pray as we go through tests, treaments, surgeries, etc. Please try to have someone with you for moral support when you go with Jim on Monday. We here will be with you in spirit.

Praying for you both, Malka

Paula,

I am so sorry. If I can help in any way please ask.

Paula- The side effects my husband has experienced are nausea, exhaustion, and red eyes. He has just been given the pain patch to try and help with the pain he feels in his jaw. Please pm me if you need to. Our husbands are the same age and maybe I can help, even if you just need to vent. Sue

Paula,

So sorry about the news. I will keep both you and your husband in my thoughts.

Sue - what do you mean when you say pm me...I'm not real good with cyber stuff, but do know how e-mail and such...just not good with the abbreviations that our e-commerce systems use.

Did your Dr. give y'all a time frame like ours did or is this something that some Dr's give and others do not...

How does everyone deal with the unknown? Should I wait for him to bring up the future and get that talk out of the way, or should I....I just want to have the talk and then never discuss it again and enjoy what time we have left together. What does everyone else think?

Paula

Paula,

If you go over to the left side of Sue's post and click on her screen name a drop down list will appear. Click on "Send a PM" and you will get a screen where you can type a message and that will send an email to Sue. It's that simple.

Jerry

Paula- I started the conversation about the future and final plans. I took Minnie's advice- had the conversation and let it go. We just had our wills done which is something we should have done awhile ago since we have children. That also included power of attorney and living will. The power of attorney is important so you will have access to accounts and records. I know this is difficult to deal with but I feel so much better now that it is done. Next step- I want to start dealing with funeral issues. This is the worst but I will have to deal with teenagers and want to have things already planned.
I'm really sorry if this upsets you but I think it actually makes you feel alittle "in control" of things we otherwise have no control over. As for remaining time- we really don't know except for the opinion of the oral surgeon who just told us that based on the size of my husband's tumor he would say he has about 2 years. His surgery was 9 months ago and so far the metastasis has not responded to chemo. He has one more dose of Taxotere before he has another scan. That should give us more info. I just pray we have a great summer with all of us together because I don't think the fall and winter coming up will be.

Sue

I hope I am not being intrusive here but for anyone wondering about having this conversation, I just wanted to recommend getting a copy of the "Five Wishes" form/booklet,
https://secure3.electronet.net/agingwithdignity/subCategory.cfm?SID=3&category_ID=1

which I think would be a great way to start a conversation about some of the more difficult issues including what someone might want at their funeral or memorial service, and medical intervention steps that they do or do not want taken and under what circumstances (it is much more detailed and thus asks you to think out these things ahead of time much more than a health care proxy).

When I was diagnosed with cancer, I got a copy free from my church (many churches and some human resource offices have these forms) but you can also order a copy at the web site above. I have been working on some of the things in mine, including what sort of service I want after I die, even though I hope to be alive for many more years. It's really something everyone should do to help their loved ones should they die (suddenly or otherwise).

Nelie

Here is some information about the organization ("Aging with dignity" that publishes Five Wishes.

http://www.agingwithdignity.org/

Unfortunately paula i have had those conversations.If i can be of any help please feel free to ask.

love liz

Paula,

When Jim is ready, hospice is very helpful. There are stages that you and he will go through in this process. Just be sure he is as comfortable and free of pain as possible. My heart goes out to Jim and you and I'm so sorry this has happened. Life can be so friggin unfair at times, just have to deal with what it gives us a day at a time. You are in my thoughts,

Nancy

Thanks everyone for all the kind words - and no it doesn't offend me at all, Sue. I am at a loss right now. Jim went to radition today and they zapped him good in the belly to get to his spine - he threw up several times in the Dr.'s office and we are home now - he's asleep. Dr. said the nausea will disappear as quckly as it came on. No one ever thinks about people that only have one leg...he just can't run to the bathroom, but has to rely on crutches or a bucket.

I'm off of work the rest of the week - we go see the oncologist tomorrow to see what type of chemo cocktail they want to do for him. His parents come up on Wednesday and we will spend time with them - Thursday we see an attorney for all the legal stuff - I don't want to go there at all...Jim says we have to do it. Since we don't have children together, I don't see the sense in any of it, but he does, so I will comply. He did say that maybe this weekend we could go to a bed and breakfast to spend some time together. Right now his brother is staying with us (who annoys the s..t out of me, but he really means well and he really helps out a lot. The house that I wish now that we hadn't purchased is down to the bare bones and I don't even begin to know how to put it back together without Jim. We have the $, I just don't know how to go about getting a reliable source to help us out. I think it's funny, that I work at Mary Kay in Dallas and have for 15 years and have worked on the Habitat for Humanity Homes (Jim has even been so gracious to fire up his huge smoker and bring it to the jobsites to feed all the volunteers) and now I am faced with trying to get a home remodeled. I am trying to convince him to sell and let's cut our losses, but no way - he does not want me commuting 1 1/2 hrs. each way every day. So I am trying to be patient and sit on my hands AND mouth! His parents keep telling me that this will help keep Jim busy and his mind off of the situation as much as possible. They are wonderful people and I hate that they hurt so much. I hate that Jim is hurting so much....I'm glad that I have my cyber friends very, very much.


Thank you for all of your support.

Paula

Oh Paula - my heart is with you guys through this time. I wish there were words or some special "handshake" to send you that would make this easier.

I agree with Sue on the discussing the future makes you feel somewhat better and in control. That really helped with my mom. When her cancer spread to her lungs and brain it was "wait to die" time. She was very strong mentally for awhile and wanted to do alot of things. Our first reaction was no - rest, take your meds, etc. then we realized that whatever she felt like doing - she should do and if she wanted to talk about her funeral or other depressing stuff - we should let her. Now - by no means am I saying that it's easy for the caregiver - my life was HELL during that time and so was my father's, but we had to do what we had to do for her...

Good luck to you through this and keep posting. The people on this site have got to be the most amazing people in the world!!!

Paula
on the day that Rob was told there was nothing more they could do,we drove home in total silence.When we got home,i dropped him off and took the dog for a walk.We both needed some space to get our heads round the fact that he had a few weeks left.It was a total shock,we never saw it coming ,had no preperation time ,god he never even got offered chemo or anything else.

When i returned home 30 mins later,he was sitting in the lounge with a very expensive bottle of brandy and two glasses,and as soon as i walked in he told me to sit down,while he told me what was going to happen.

He then rattled off a list of things he wanted me to do,a list of things he was going to do and within a short while i was setting it all in motion.

I was in shock,but he had been thinking things through for a few days and was expecting the news.I didn't argue with him ,just set about doing everything he had asked.It was surreal,but it was all i could do for him then.My admiration for him knew no bounds and all that he wanted was done in a few days.

This left us three weeks to spend every minute together we had left.During that time he had the chance to tell me his wishes after he was gone.He was so so brave and it made my role so much easier because i just (for the first time in my life)followed his instructions to the letter.I didnt have to think or make decisions for myself.

Just listen to him Paula,and let him tell you what is in his head,and let him know that everything he needs or wants you to do will be done. This will ease his mind and let him concentrate on his own fight against this bastard disease.

I wish you both a peacful time together.


love liz

Well, we're home now from a surprise camping trip for me. Jim made arrangements to have a travel trailer brought to a Tx. state park nearby, instructed me to pack cool clothes and bring all of our paperwork.

We have been working on combing our files, he going through his and throwing things away. At once point we came across all the house plans that he had drawn up for us at different points and said he wouldn't be needing these and to toss them as well. I couldn't do it - they were all in his handwriting - he noticed that I put them aside and said, Paula, you didn't do as I asked - I know you want to see my handwriting, but it will not do you any good. He said that he has spoken with so many people that have lost a loved one and one of the hardest things to do was to throw out paperwork - cause they didn't know which ones to keep and which ones to toss. His goal was to remove that burden off of me. So I tossed them, too.

Another pain in his back developed while we were away and it is excrutiating - so I called RAD Dr. and we are to go in Monday. I called his chemo nurse and she told me that this was a good sign, when chemo is working, cancer begins to die and that this is very painful. I've never heard this at all from any of his Dr.'s., so we will talk with his RAD Dr. as he really shoots straight with Jim. Jim doesn't want the "warm, fuzzy, emotional, B.S." - only the facts so he can make the best decisions.

We did talk about our trip to England to see my brother (who is also terminal with cancer) and Jim doesn't see himself making the trip. So I'm to try to get our $ returned or combine the tickets for me....I cannot leave Jim now to go see my brother - I would go nuts being that far away from him.

Also - Jim is sleeping a lot...is this due to the chemo, pain meds or is this what's to be expected when the cancer returns?
How will I know when to call in Hospice, I wake up every hour just to put my hand on his chest to make sure he is breathing; I'm so afraid that I will make a critical mistake and it will cost of precious time together...How will I know when the end is near?

Thanks to you all for being there for me - this board is all I have for support.

Hugs,
Paula

Paula:

I have been reading your posts and praying for you and your husband. Im sorry that you are going thru this. I wish I could help you more by giving you some good advice, but Im sorry I cant. Im here to lend an ear and moral support.

Pain meds do make you very tired. Also when fighting cancer it wears you out too.

Paula, You and your husband have been in my thoughts as well.

I can't give a lot of good advice but when you asked "how will I know when to call hospice?" it made me wonder if you have talked to anyone at your local hospice at all yet. If not, I would say do it as soon as possible. They know a lot about pain control as well as so many other things. They are not just people to bring in at the very very last minutes but people who can help him live all the time he has up to those minutes in the way he wants with minimal pain. They will also just help you feel much less alone. Although this board can also do that, it's good to have support from more than one place right now.

You'll remain in my thgouths and prayers

Nelie

Paula,

When I hit my knees tonight, you and Jim will be in my prayers.

Paula
i cant speak highly enough of hospice care.In the Uk we have two types of hospice care.The first is home care provided by the community palliative care team,and the second is actual inpatient care when the time is drawing close.I am a qualified nurse ,but the one thing i was terrified of was robin dying at home.When the palliative care consultant came to the house,it was one of the first things he asked me about,and i told him when robins time was close i would prefer him to be in the hospice.The main object of palliative and hospice care is pain management,the most important to me was the total family support they provide.The nurses never came in to our house to see robin and see to his physical needs,without taking me into the kitchen and asking how i was coping/sleeping/feeling etc.When Rob was admitted to the hospice to get his pain managed ,it was like being wrapped in a great big warm blanket,of love and care.Rob loved the place and the people who cared for him,and his only real fear was being sent home again which he never was.They saw to his every need,physical,mental and emotional and the team of Doctors,Nurses,alternative therapists,counsellors and chaplins,were dedicated and committed to all our family.Rob had massages,aromatherapy,rakhi,counselling sessions when he was in the mood,and clear concise information given to him at all times.

They were wonderful both during his last weeks,and after he had ,gone,offering bereavement counselling for up to two years for myself ,his daughter and his brother.

Jims tiredness may be caused by medication,but could also be because his body is worn down with the constant fight against the onslaught of the disease ,a good palliative care specialist will explain the mechanics of losing the battle,and the manifestations it will display,so my advice is get in touch with some one who can explain it all too you.

i am please you Pm'd me and hope i can answer your questions,and help you through the next few weeks/months.

much love liz

Paula- I have already spoken to someone at a Hospice facility near us. She also explained that you don't have to wait until the last minute to reach out to them. As Liz said they are also there for YOU. Please call them soon. You needn't go through this alone.I have been praying for you and Jim often.

Sue

Thanks so much for the advice everyone. Jim and I go see his RAD Dr. tomorrow and I am planning on getting Hospice information. I thought they were there only for the end - When I think of Hospice, my only reference is from the move "The Gloaming". I'm going to miss another day of work, so that I can get some more definitive answers about this.

We had a better day today - he didn't seem as tired, however his knees buckled at one point and I thought he may have broken his back. But he sat down for a few minutes and then off again. He's incredible and I only wish that I had 1/4 of the strength that he has.

Thanks again everyone for your prayers and advice...so ready or not, Hospice, here I come...without Jim for now.

Hugs to my cyber friends!
Paula

Paula- You obviously have an amazing amount of strengh yourself-do not underestimate that. Let me know what kind of info you get from Hospice. Sue

We spent 6 hrs. in the RAD Dr. today - they were surprised to see us so soon. But they went ahead and did the tatoo, the trial run, got all the powers to be to agree to the angle of the beam and then burned the hell out of him....We got home at 7:00 pm and he exerted so much energy removing his prosthesis, that when he made it to bed, he broke out in tremors, that took all of my body weight to hold him in the bed...after about 10 minutes of shaking, which seemed like 10 hrs., he settled down and is asleep. I went to the store and broke apart in Wal-Mart...some lady came to me to hug me and then told me about this great tea from Mexico that saved her life from cancer....I don't know, right now, it just seems so hopeless....I couldn't bring myself to talk with the Hospice people today as I didn't want Jim to think that I was giving up on him....I'll wait for another day.

Thanks again everyone for all the prayers.

Hugs - Paula

Paula, I have been reading here...just couldn't post to ya till now. I just ache for you. I just lost my 31 y/o daughter to this evil disease in Nov. I'm also a Nurse.
The fatigue is quite typical, due to meds, weakness from disease, the body & mind are worn out. They will sleep more, and more.....become weaker. You will know.....it can happen slowly, or quite quickly, so take each day as you can. If there are things you need to talk about do it. If you need to hug, love, hold each other do it whenever you can. I held my girl and would say "I need to hold you" she'd reciprocate. As she died, I would say ' I hold you, honey'....
You are so normal in wanting specifics, and there just arent' any. But, you will know.....as things change. Contact hospice, have them available when the time is right. My heart and prayers go out to you. It just seems so unreal, and yet so very real. Make sure he has plenty of pain meds. There is no reason for him to feel any pain, and when he is ready, or it is the time, keep the emotional pain at the lowest too, with sedation. Christa never wanted to be out of it, yet she didn't want to have to suffer either. She had to see her 2 y/o daughter and know she was leaving her. Sedation can be a good thing. It is up to the person.

Paula,
From what I remember from when we put my father on hospice, is you are not allowed to have any treatments or medications that will prolong your life so I don't know if he would be able to continue his radiation treatments, even if they are palliative. Ask when you contact them. You can go on and off the program. Hospice is for the terminally ill and they reevaluate the patient every 6 months to see if you should remain on hospice. They were marvelous at pain control and the nursing service they recommended, but didn't pay for, was excellent and the cheapest in the area. I think you should contact them now so you have the information when you need it.

Take care,
Eileen

Just a quick addition to what Eileen had to say. Many hospice facilities now allow patients to be on palliative treatment/medication while they are on hospice care. A six-month prognosis is still the standard for entry, but many people come so late to hospice that they (and their families) miss out on many of the benefits. I would encourage you, when you feel ready, to contact hospice in your area and see what they offer, how they might be able to help you and your husband right now, and what services are available. If they don't feel Jim is appropriate for hospice care, they will certainly tell you that, but at the same time you might get some real help and support right now. And it doesn't mean you are giving up on him or his life.

My thoughts and prayers are with you both.
-Tricia

when rob was in the hospice there was a french woman in the room opposite him.she was collected every day and taken for chemotherapy treatment at the local cancer centre but as i have said in our pm's paula ,things may be different in the states. i get the impression you would be looking at home hospice care to start with so don't see why this should be a problem.

take care
love liz

I disagree with Eileen. Palliative care care should never be stopped because of hospice. It is given to mitigate pain and sometimes will prolong life slightly. If RT is given for palliative measures then, almost always, the purpose is to shrink the tumor to relieve pain.

Palliative definition

"Relieving or soothing the symptoms of a disease or disorder without effecting a cure."

The American Heritage� Stedman's Medical Dictionary
Copyright � 2002, 2001, 1995 by Houghton Mifflin Company. Published by Houghton Mifflin Company.

Which is the basic hospice charter...

It's really not a factor of what kind of treatment you are getting as much as did the doctor write the order for hospice care. It is possible to get a full treatment protocol and be in hospice at the same time.

I may have mislead you. What I meant was as long as he can continue his radiation treatments, why not consider hospice now. Since you can go on and off it, if his doctor found a new treatment that could be considered to extend his life, you simply stop hospice until the new treatment ends. If the treatment is unsuccessful, then go back on hospice. Many people wait too long before enrolling in hospice. Once one is considered terminal and is willing to refuse life saving measures like resusitation, then one is eligble to my understanding. I was only suggesting you investigate it now so you know when you should enroll.

Take care,
Eileen

Does hospice require a presctiption. Won't the Dr.'s tell me when it is time for this? I don't want to go asking these questions as I'm afraid they will think I am being way too premature?

I thought the same thing myself but when I spoke with someone at the Hospice near us, she didn't think that I was jumping the gun.
They are there to help even if the time is not imminent. I think that this is such an individual thing that they want to help as soon as you need it. As for the prescription I don't know.

Paula, how are YOU holding up? Ask Hospice if they have any help available for you if you need it. The woman I spoke to was so kind. I haven't taken advantage of her offer of counseling yet. We are waiting for the results of Neil's scan from Friday. It's really frightening how similar our husband's stats are.

Just wanted to let you both know you are in our prayers.

May your God go with you girls.
Marica

Thank you Marica - prayers is what is needed most. As for me, Sue, I don't know what I'm doing. Jim slept most of today. I cleaned house and found myself on my hands and knees schrubbing the floor in the bathroom...all I could think of was that the bathroom is such a germy place and that if I used Lysol and scrubbed really good, then it would kill the germs and Jim wouldn't get any infections. What a dumb thought!

This board is my support - I read it all the time; I have very little family and I don't bother his family because I don't want to upset them. I cry all the time when I'm by myself or typing on the board. I hate this emptiness that I have. I am soooo scared...there is so much on our plate and I don't know how we will do it, but I trust that God will see His plan through and I'm not to question the plan. I looked at the similarities, Sue in our husbands and you are so right, they are very, very similar. When Jim and I were in the Dr.'s office last week, there was a skeleton that had red dots on it, showing where this cancer often metastises...leg, lung, chest, etc. Jim had 'em all, except for the skull. Jim asked about how long before it would go to his brain and the Dr. told him that typically SCC doesn't go to the brain, but just the skull. So, I kept looking at the skeleton thinking this is exactly what the inside of his body looks like - a textbook skeleton with red dots - so simple, but yet don't have a cure....

Sue - when will you find out the results of Neil's scan?

Sue and Paula,
My heart goes out to you both. My prayers are with you for strenght and comfort as you support your husbands.

Sue and Paula,

hang in there its just a phase and will pass away, i know its easy said than done, but it works, believe in "Everything Happens for good"

U both are in my prayers .

Paula- Neil's doctor is on vacation this week but he said to call the office and make sure they fax him the results at home which I did this morning. I hope he calls back fairly soon as we have two graduations this week and we are going to the beach next week on vacation. If this Taxotere has not been working they of course won't be giving him a treatment this week and maybe he'll feel ok for vacation. If it has been working they will keep him on it at a reduced dose to help with the side effects. Either way I'm not sure if he will get chemo before we leave. I would like him to feel halfway decent as I really have a feeling this may be our last family vacation. Our daughter is going away to college in August and this whole summer is going to be very emotional for all of us. We're not asking for much, just some surf fishing and good weather!

Sue

Sue, I hope you are able to have a vacation together and enjoy something every day. My heart is with you as well. It is a very hard road we travel......
Paula, you are on my mind also......

Thanks Linda...Jim has been in a very bad mood this week; he had chemo today so I guess we are going to spiral down for the next 4 days....I'm weary from it all and people at my office are telling me that I look very tired...and you know what? I am! But, I'm hanging in there as if Jim can fight this fight, then I know that I'm up to it as well.

Sue - try and have fun on your vacation...I want one of those to, but Jim just isn't up to it. His parents want to take us somewhere in August, but I feel that he may not be up to it then...but I'm holding my faith that he will be!

Hugs to everyone...Hi Liz!!!

Hi yoursef.Nice to see you posting

xxxxx((((( liz)))))

Dear Paula, you've gotten some really helpful information in the last few weeks from this group [and I know Sue is struggling with the many of the same questions] and I want to share some thoughts with you. You are NOT GIVING UP on anything by requesting hospice. IN FACT, you will be doing Jim, yourself and your family a great service. Whether it's in home care or at a facility, there will be professionals available to ease the pain and fatigue for all of you. One of the most echoed themes on OCF is "how differently we all react to this disease, the tx. and the outcome". That is soo true. Liz [a nurse] was terrified that her Robin might die at home. I [an old English teacher] promised John that he could die at home. But both of us got greatly needed support from hospice. So much of what you are going through is still very clear in my mind and my heart goes out to you. AND you need to have strong, professional people around you to keep you grounded while dealing with this- for your sake and Jim's. Amy

Amy

lovely to see you back

love liz

Ditto, Amy.....It's great to know that you are still "in the neighborhood." I hope all is going ok with you. Thanks for checking in! xo--Colleen

Hi Everyone,
Just a quick update - Jim is feeling lousy, but we are making some progress on the remodeling of the house. Jim has developed a slight cough and tries to hide the pain from his face. I contacted MD Anderson in Houston and went over everything with their Dr.'s and they told me that they couldn't do anything for him that isn't already being done. I was heart-broken and I haven't told Jim yet. He wanted me to pursue this avenue, which I did, but will wait until he asks me what I found out. I do have all of the Hospice numbers to make contact with, but not going to do anything at this time. Jim has been very short with me the last few days, but I know it's because of his pain level - I am walking on eggshells around here.

Amy - it's so good to hear from you and see that you are hanging in there with us. A special thank you to Liz for all of her deep wisdom and understanding of a soul wretched in pain.

Paula

Paula,

I'm certainly not the expert but judging from what others have said after going thru what you and Jim are facing you really need to get his pain under control and apparently it's doable. Wish I could help.

Well today has been a roller coaster ride to say the least! I got up this am and got into the shower...half-way thru, Jim said he needed the bathroom, which I replied, well come on in...I'm in the shower...he wouldn't have it. I jumped out, shampoo and all in my hair. We only have one bathroom in this house - when he came out, he lost it....he fell into bed and started to cry - he said that he couldn't fake it anymore and that he couldn't take the pain anymore and that the process of dying had started - he could feel it. I told him that this was just because he hadn't had any pain medicine for 8 hrs. and that he would be fine...he told me to brace for reality. I gave him his medicines and he proceeded to put that damn prosthesis on (which weighs at least 20 #'s) and I can hear every groan that he makes when he starts pulling the suction up and lacing it....I went to work (which he made me do) and he went off to check on the framers that are remodeling our home. When I got to work I called all of his Dr.'s to which they of course wanted to see him...I left work at noon, went to pick him up and proceeded to the radiation and the oncologist (whom I cannot stand). Bottom line - they gave us a script for 100 mg. of oxycotin and more breakthrough pain medication. I'm a wreck - JIm is very frustrated - his nurse even told me that he looked really bad - - - well, duh! The man is in excrutiating pain and I feel totally helpless! So, I just gave him his meds and hopefully this will help.

Thank you Brian for this board....I don't know where I would be without being able to talk to someone about this....

Liz - where are you?

i am here honey.I have sent an e-mail to your personal address,and a pm .xxx

I'm sure others with more knowledge will post but can't you get Hospice involved now. From what I've read they will wonders for the both of you.

Paula- My thoughts are with you right now. The process has started with my husband as well. I think I realize it more than he does. I wish I could give you a hug-we both need one!

Sue

Did the oxycotin help? What all is he taking? Have they explained that he needs to be taking that around the clock and then supplimenting with the breakthru meds between those doses?
Have to get the pain under control, he does not need to have any pain. There is no 'toughing' it out anymore.....comfort is a good thing, and necessary! Anything for anxiety/depression/fear/complete devastation? Need that too.
Do you need a lil' somthin for those also. I know I did. Just a lil' bit takes the edge off the trauma's of what daily life is right now. Linda

It seems that his pain is under control for now. We went to the house this morning to check on the progress of the workers and when he came home, he wanted his head shaved - that was a new experience for me. The Dr.'s told him he would lose it and he might as well shave it off.

Linda - you're right, I probably need something for me to take the edge off - but I don't know what would be able to do that for me.

Sue - Liz sent me some great information about the process and it really helped. You might ask her if she would mind sending it to you as well. She is very, very good at understanding the pain that we are enduring as she has definately walked the walk and continues to do so. I just think that Jim was in so much pain that he was ready to toss in the towel; because he has such a high tolerance for pain, it must be very, very bad. I'll be out of town for a few days as Jim wants his parents to meet my mother - wish me luck....remember she's the one that continues to tell me "you knew he had cancer when you married him".

Hand in there, Sue - - - we are all praying for you.

Well we went to the oncologist on Wednesday and Jim's white blood cell count is very low. She is only going to give him (2) more taxotere treatments and then scan him in August. He has lost 11 lbs. in 2 weeks which was concerning her as well. She did mention that the pain he was experiencing last week was that he had built up a tolerance to the pain meds and needed to up the dosage. She said it was not indicative of the tumors growing. At least that made me feel a little better....

The house is a disaster - his brother ran the jobsite while we took a quick trip out of town so that his parents could meet my mother. They started to roof the house, left for the evening without a tarp on it and low and behold, murphy's law visited, it poured down rain and soaked the inside of the house...so now it's going to cost us more in money, but more importantly time!

I hate this dreaded disease!