The End Is Near

Relatively new to the site (my dad was diagnosed with MM in Oct 2007), I have not posted or responded to many posts.  I have appreciated everyone's candor and sharing. It has been a very informative message board.

Yesterday, at the cancer clinic, we were advised that there are no more treatment options for my poor dad.  At this point the options are be hospitalized or go home with support.  The family has decided to keep him home for his last days.  We have been advised that his MM is through his blood.  His platelets are dropping dramatically and at the same time his calcium levels are toxic and rising.

I understand that his body will shut down in the next week or two.  He is failing so...he is rarely alert, has difficulty eating, but manages to get up for short walks and manages the stairs 2-3 times a day.

I am going to clean-up what I can at work today and then move in with my parents for the duration. For those who have walked this path, what advice can you provide me?  What should I expect?  How can I best support both my parents and sisters during the next few weeks? I am the eldest and hence others look to me to lead.  However, I am book smart, I am not good at jokes or small talk. 

 

Ilost my husband in October from this ugly disease 13 months after diagnosis. I don't think any two patients are alike with this disease and I also don't think the end is the same for anyone. Everyone seems to respond differently to the variables. Weakness is inevitable at the end, however this occurs more often than not during the disease. My husband survived a transpant that rally didn't work. It seemed to at first but at biopsy time he was still 17 percent. It did cut it in half from 31 percent. What to come from that point on was unbelievable. In September he was 91 per cent plus and failing. My husband never quit. He drove he worked and walked. He did lose a lot of weight and was in intense pain and very tired. He also did not have much of an appetite. Velcade did not work for him. He did complete on cycle but they could not continue it. His last treatment was administerd in the hospital and eventually ended his life. It was avery radical chemo treatment that was not typically used for multiple myeloma but for various other cancers. It caused kidney failure and then everything began to shut down. The chemo was actually working on the cancer. Plasma cytoma's flattened within a day. His death was of septic shock, respitory failure and pneumonia. He aspirated on his stomach gases when they tilted his head back to get a blood pressure reading. His immune system had been compromised for sometime but strangely as it may seem he never got sick or had any broken bones but he did have the missing 13Q chromosone and his cancer was very aggressive. Before this proceedure he only had about a month or two left so they said. If this worked he possibly would have another year. In the hospital transfussions were a daily occurance. His blood counts were zapped. He had to get so many fluids that he gained 42 pounds in 5 days. His legs were so swollen. The fluids went to the lungs which caused anxiety because he couldn't breathe. He ended up coding 3 times and on a ventilator. He lived to come off the ventilator for 7 hours and then the anxiety set in again. The end is like a roller coaster. You go up and down. My husband was a very strong man. He was somewhat coherant till the end. He was also only 58 when he passed away. Anyone one on this site will tell you there is no rhyme or reason to this disease. Anything can happen. There is always hope. With this disease your life and his life will never be the same again. We all just have to adjust to what is to come and hope for a good day here and there. I hope I have helped you a little. I think everyone's death comes a little differently. The skin changes texture and if the organs are shutting down which they usually do the skin color gets yellowish or grey. I don't know what it is that happens to the ears, but apparantly the change. I didn't take notice to that. A nurse told my friend about that. I held my husband's hand as he paseed knowing his pain was finally leaving him and he was going to our heavanly Father. This is the first death I have ever wittnessed.He died in the hospital. He probably would've been happier at home but he couldn't come home because he was in critical care. For me it would've been harder at home . Just be there for him and shower him with love. Miracles do happen. When God is ready he will open the gates for him to enter.

God Bless

Linda

I am so sad to hear this news.  I am very sorry to hear the pain you are about to face.  My dad too has mm.  He was diagnosed 3/05.  I too will have to face this same news soon.  I can't even imagine this.

My thoughts are with you,

Anita Searles

 

I have just been down that trail you are going on.  This may sound weird, it was the hardest thing I have ever done and yet it's the proudest thing I have ever done.  My dad (and mom) lived in a town about and hour from my home.  Once he took a turn to the worse and hospice had told us he had 7-10 days approx.  I did the same thing you are doing and basically moved in with my parents.  There are five siblings, 3 guys and 2 girls.  My sister and I have always taken charge of the care giving of my parents and guys would do anything we asked them to do.  We have been very fortunate in those regards.  My sister and I decided we were going to keep him at his home if that's what he wanted (and it was what he wanted).  These days became a blur. He was alert and then the pain jumped dramatically one afternoon.  Morphine drops were causing huge anxiety, contacted our hospice nurse she told me to give him benadry (2 pills).  It worked! (remember that trick). Then later we got a prescription for medicine.  We were able to have the patch morphine and then use the drops every hour around the clock.  This pretty much knocked him out.  But that is what he was wanting due to the pain level.  And I had promised I would keep him comfortable.  And you can!  Be aggressive with the pain medicine.  Say everything you want to say now while you can.  One more thing...my mother wanted us to back off of the pain medicine in case he would want to say something...I didn't do it (I had medical power of attorney) he had asked to be knocked out and put out of pain and I was keeping my promise.  Not that I didn't want to hear his voice again, (like her) because I did...I missed everything about him (except his smell, I could still smell him).  But who would that of been for...not him.  Later, from several nurses and doctors had told me I had made the right choice, because there experience has been people who back off of the pain meds on patience, well you can't always get back on top of the pain and the patience die very painfully.  (Remember that one too)  His last day was beautiful, his breaths got more and more shallow and he faded away.  All of my siblings were there and were blessed as a family and blessed to be a part of his journey.  Was it difficult??? absolutely!  We were so exhausted we didn't think we could make it another hour, but we did.  Hang in there ... you can do it.  Our path will be different than yours but it's your path with your loved ones and you don't get a do-over.  Try to take in the moments good and bad you won't regret it.  And I will be praying for you!  God bless...

Hi, I want to tell you my story and I hope that it will give you something to hold onto and not give up. My mother was told the same exact thing. That there were no more options. She has been battling MM for over a decade. I refused to accept it and moved to Florida from California to care for my mom. I did research, spoke w/ her doctor and told her that I would not accept that there was nothing left for them to do. Until my mother is gone, they need to continue to treat her. They put her on VAD which didn't seem to do much. I fought to get my mother financial assistance so she could try Revlimid. She started it a few months ago and her IgG's (myeloma cells) have decreased by eighty percent. Her doctor is amazed at how well my mother has responded to this. (before the revlimid it was bad. She had a broken rib, blood clot, she was getting blood/platelet transfusions repeatedly). Ask the doctor about velcade/revlimid. From what I've read it many people have responded well to the combo. My mom's doctor was trying to get her in a study before she got the assistance which enabled her to go on the revlimid/dex combo which, as I stated, has really helped her condition. The only downside is she has recently had low WBC/platelet counts but overall my mother is feeling okay. Don't give up. Look at your options and talk the doctor. Remember, I was told the SAME THING YOU WERE. I was very vocal about my stance that I would not accept the "no more options" statement from her doctor. As a result, things have changed dramatically....for the better. Good luck and let me know what happens.