Told the time is near, but praying it is not

[1clemsontiger]

I haven't posted since my introduction back in May. My name is Sherry Scott and my husband has multiple myeloma. Back in May the doctor's found a lesion on his pancreas. A biopsy was done and it was not pancreatic cancer. However, the oncologist said that it was myeloma cells attaching themselves to the pancreas. Joseph had been doing okay but still extremely weak. He went to the doctor last week on Wed and they told him his hemoglobin was low. He went back in on Thurs for 2 units of blood. Starting Thurs, he has not been able to stay awake during the day. He is on the cancer medicine Revlimid, which he takes in the morning time, but he has been on it for a couple of months now. He is started back a couple of weeks ago taking Dexamethasone. He was taking I believe two tablets at a time, but then his oncologist told him to take all ten tablets for the whole week this past Sunday morning. He has had terrible fluid retention in his feet since that time. The constant sleeping I figured was some of the meds, but on Mon night I fixed his supper and handed him his plate and he dropped it. I don't think that any occurence like this happened yesterday (Tues), but then today he called me at work and said he had dropped the pitcher of tea and his cup of drink. I called the cancer center and the nurse talked to his oncologists. She called me back with the response that this was the progression of the disease. I asked her if he was dying and she said that the end is drawing near. We have an appointment in the morning to talk to his oncologists and they want to admit him to the hospital. I just don't understand how someone can go from getting around fine before medications were started and then two months later we are being told he is dying. Another thing is that his concentration is not good. Anyone that has been near the end with their spouses or anybody else that has any input, does this sound like he is dying? I can't stop crying and I know it's not good for him to see me this way, but this is my soul mate and I'm not ready (never will be ready) to let him go). We are still going to fight with everything that we have in us. I am praying for a miracle.

[mherynk]

I definitely would not take the word of a nurse, or anyone else, who has not seen some kind of a scan. It is hard enough to get the doctors to commit to anything, let alone the "dying diagnosis" without scans and over the phone. Don't give up hope just yet and keep on praying.

[1clemsontiger]

Thanks for the words of wisdom. I am concerned about everything in general, but the constant sleeping is really worrying me. However, he lost a lot of sleep over the last month as a result of all of the medications he is on. I asked the nurse to be straight up with me but I agree I should not take the words of the nurse. I feel now she never should have made the comments she made, especially considering they have not seen him since her or the doctors have not seen him since last Thursday when he had the blood transfusion. She said they were talking about putting in the hospital to keep him comfortable, but he is not in any pain. I always thought when somebody was dying they would be in pain. Like I said we are suppose to meet with the oncologist in the morning. I will post an update when I find out something. Everything is in God's hands. I am so thankful I found this forum. I will be praying for all of you.

[Greg]

Sherry,

My situation is similar. My wife was mostly functional 2 weeks ago. Last Friday I took her to the ER for extreme fatigue that developed over the course of a few days. I thought they'd do a transfusion or 2 and let her go home. Instead they hospitalized her and did CTs, x-rays, etc. Those results showed significant cancer advancement, especially in her liver. At this point treatment would shorten her life, not lengthen it.

2 months ago my wife was 'normal'. She has brain mets, so for safety sake we restricted her driving. 2 weeks ago she was eating and cooking. Today she's stumbling, falling, slurring her words at times, not eating solid food and wearing Depends. Yes, it can change quickly. The only way I can figure it, is once the cancer gets the edge, it seems to take over.

I definitely agree with Matt. you need more than a nurse's opinion. maybe she was in the discussions and is right. maybe not and it's just a guess. either way, you need facts for their basis. if we didn't have the scans and x-rays, I wouldn't believe it either.

I'm know this post probably isn't encouraging, but please know that you aren't alone. It sounds as though we may be walking the same path together. Hang in there.

Greg

[JBaker]

Sherry,

First do not allow him to drive at all if he is or was. Do not allow him to possibly take someone elses life into his hands!!!

My wife passed from breast cancer two years ago this October. In the last month her abilities decreased quickly. She also had brain mets that complicated things from that standpoint also though. She did lose her right side coordination and needed to eat using her left hand and take care of herself however she could usign her left. Her mind also would get periodically foggy, and other times she would be right on. By that time I was on top of her medications full time so she did not have to worry about times or schedules.

Anyhow and unfortunately from what you describe it "might" be signs of how this disease may end up winning its battle. For the water retention in his feet or lower legs, compression stocking could help to work it back up into his legs and out. Either calf or knee high types or even thigh high could be used. My wife had some issues like that after a blood clot in leg and needed a 30-40mmhg compression stocking(thigh high), also my job to get on her. Be very careful watching him and supervise his motions throughout the house and outside whatever it is that he may do. If he were to fall because of balance or muscle coordination he might need help getting back up. Now is the time to definitely be watching him for his safety and for your concerns for his well being. I have no guess to time and would not want to, but these are all progressive signs. Dificult as it may be to think about it, but possibly get a mattress pad cover ($10) goes under sheet (3foot X 5 foot)and is flannel on one side and vinyl on the other. Also possibly having some pullup type of absorbent underwear or tape on absorbent product. Just have these on hand for when they "may" be needed. Sneak those into the house so as not to cause troubles with him and his feelings towards himself. Bladder is another thing that may start causing trouble controlling as well.

Talk to the Oncology professionals and ask pointed direct questions of what to expect and possible time schedule. If possible without him present if he does not want ot know, or set a different appt. The above is just very general info but may be a start for you. Please ask questions us regulars will try to reply and answer as best as possible. Some of us have already lost our spouses and can relate to that part, yet all of our walks have been different. Just love your husband and take care of him for better or worse and in sickness and health. All of this is emotional hell to go through but know this group is here for support of you however we might help. Thougths prayers and heart are with you.

Jim

[1clemsontiger]

We went to the oncologist this morning. She is going to continue the cancer meds. She did not admit him to the hospital and is going to schedule a home health nurse to come in. She wants him to be at home as much as possible. She says that it is in the final stages and that we are probably talking two months. I have so many emotions going on right now which I know many of you have been through. I fear losing him and being alone. I am going to try to work only part-time and spend as much time as I can with him. I am also praying for a miracle.

[Greg]

Sherry,

I'm so sorry for your bad news.

One thing you may want to ask. Is the cancer meds going to extend his life? In Stephanie's case, the meds would shorten it; not extend it. So we have stopped meds and are getting Hospice. So far, Hospice is wonderful. So much of what I thought I'd be doing is lifted. It's certainly not a good situation, but they can make it much easier. Of course, we are only a few days into it.

Praying for you,
Greg

[1clemsontiger]

From what the doctor said she is hoping the meds will improve the cancer. I talked to the social worker at the cancer center a while ago and since our county does not have a good home health care program, they are going to go ahead and bring hospice in starting on Monday so he will be getting the medical care he needs. I just feel like I am in a nightmare and this is all a bad dream. Joseph is just sleeping a lot right now, says he is not in pain, not eating (I am getting him to drink Ensure), he is dropping things, and he is hallucinating. Again, I am glad I have found others to relate to what I am going through. I will be praying for you and Stephanie.

Sherry

[mws]

Sherry, I am so sorry for you. I will keep you in my prayers. I know this is a tough time. Take care of yourself. Mary

[1clemsontiger]

Mary, Thanks for the prayers. We need all we can get. Sherry

[1clemsontiger]

Since the last time I posted on Friday quite a bit has happened. Friday morning we had to call the rescue squad because Joseph was bleeding from the rectum (i.e. pure blood in his stools). The rescue squad took him to the ER at the hospital next to his oncologist. While in the ER, they gave him two units of blood. After being in the ER for 4 to 6 hours, they transferred Joseph to ICU. He still was not alert or didn't seem anything like himself. The doctor started asking the dreaded question of "do you want life support if anything should happen?" Joseph had said Thursday in the doctor's office that he did not want life support. I didn't feel I could stay the night, because all of this has happened so quick that I didn't think I could be there if anything happened. I felt that God gave me the comfort I needed to go home peacefully and that nothing would happen. The nurse gave me a number I could call her anytime. I called her at 3:30 Sat morning and she said about hours after we had left he had become more alert and his fever had broke. Around 7:15, I called and she said he was still doing better; I told her to tell him I would be there around 11 (because of the visiting hours in ICU). I called at 9:30 and the nurse said he was sitting up watching TV. She said as soon I could get there I could come on back into his room because he wanted to see me. When I got in his room, he was still sleeping and I couldn't see much progress. After I was there a while he woke up and he was more like himself than he had been since before the transfusion on July 3. He was not dropping things anymore either. They gave him another unit of blood. His doctor came in and thought he had the wrong chart, because of Joseph's improvement. They moved him to a regular room and he was calling me this morning telling me to get him out of the hospital. We are home now and he is still weak and still not eating right, but has improved considerably. The doctor says his hemoglobin is still not where it should be, but it did improve with the transfusions. Thursday he couldn't walk in the cancer center and today he was able to take a shower on his own. I know cancer patients have good days and bad days, but this has just been a complete turn around. We have an appointment for a second opinion at a larger cancer center on 7/21. We are praying that the doctors are wrong on this diagnosis. We have had so many people praying for us and are praying for a miracle. I am just enjoying every minute that he is feeling good. Everyone please continue to pray for Joseph's improvement. Has anyone every heard of a bad blood transfusion?

[mws]

Multiple myeloma is a crazy cancer. It is all about the blood. Enjoy the good days. Once again, I will keep you in my prayers. Take care of yourself. Mary

[JBaker]

Sherry and other,

When your spouse is in the ICU or where ever it may be hopsital wise...do not allow them to tell you what visiting hours are. Be polite but be persitent and as a spouse I would think you have a right to be with your husband/spouse whenever you wish to be. They put the visiting hours in place to remove the well wishers and other extended people involved and keep them managed. As a spouse you should be able to have nealry unlimited acces to them. Just be cordial with the personel and respect that fact your spouse is in there for a reason.

My mantra from a song but fits in with so many situatation. Just has motivated me and gotten me through a lot. Just a very simple but strong verse.
"Would you hold your thoughts in silence,
Would you free them with a shout?
Would you demonstrate your patience while your destiny's dealt out?"

Take care all and be empowered for your spouse.

Jim