How to stay positive? Depression? Is this normal?

General
1

How do you stay positive when your loved one is rebelling about testing and treatment? My dad seems to be stuck on dieing a miserable death. He says he doesn't want to do any tests or treatment, because he is starting to feel better and doesn't want to feel anymore pain in his back. He also said he doesn't want to do treatment, because he will get sick for 4 months and then die painfully. I tried to tell him that it wasn't going to be that way, but have an open mind and to see where you are at and what options are available. He finally gets to see the Oncologist this week. I won't be able to come, because I am still in the moving process.

I am feeling frustrated about the thought of moving 1700 miles just to watch him die without a fight. I haven't voiced this thought to him. Although, if the odds were against him, I would understand, and so I don't think I am being unreasonable. Sorry about the rant.

My other question, is this a part of depression and is it the normal process of learning about being diagnosed with a cancer?

2

She, I had something of the opposite situation with my dad, who was taken by pancreatic cancer five years ago. He was determined to fight and try anything possible, whereas my mother and I felt in our hearts that the treatments would not help him (and the odds were very much against him), and we didn't want him to suffer any more than necessary.

I think everyone reacts differently to a cancer diagnosis. I am sure the oncologist will encourage your dad to go ahead with treatment if there is a reasonable chance of success. How soon will you be with him? You may be able to help him see a different perspective once you are with him.

3

Is there someone who can go with your father to the appointment with the oncologist? And can he record the appointment to his phone? It might be valuable for you to hear it, if both he and the oncologist are amenable. Is this a new diagnosis, or has he relapsed? If it's new and he's facing his first treatments, please tell him that many of the agents used to fight MM often have few and mild side effects. I was diagnosed a year ago, and have just finished a very aggressive course of treatment that's put me in a good remission. For most of the time of my treatment, I was able to continue working and that included travel to other countries when it didn't interfere with my infusion schedule. Of course, there are many agents available to fight MM, and each patient reacts differently to the treatment, but I do know of many people who were able to function pretty well during treatment - some discomfort from time to time yes, but for the most part not really in pain. I was able to walk 3-5 miles per day throughout, with very few days when I didn't feel up to it. Encourage him to just consider what the doctor proposes, he and you can always do some research on line to find out how most people respond, what to expect, etc. This disease is so treatable for most people, there is reason for optimism! Good luck, and God bless.

4

Good evening She, I am behind on all my computor time as I am out of town on a business trip. sorry for the delay. I read your posting about Dad, it make my heart scream out, I am so sorry for you guys. With the information you have given about him he does not sound in to bad of shape, I would guess he is pretty good health otherwise? Sounds like he has had a great deal of pain from his lower back, and he also had a bone marrow biopsey completed. Both of these can and will hurt like crazy, and high levels of pain will weaken your resolve more than just about anything. First of all he needs to know that the chemo is more a biologic than a chemo he would expect. They will most likely want to start him on Velcade, Dexamethasone and Revlimid. Not all three at once, but Velcade with the Dex and if the response is not what they want then they will add Revlimid or another drug. These are all either a shot or a pill, all have side effects but they are managable, They will need to do blood tests on a weekly basis for his blood count. Please explain to him that they are not that bad and he can do this and they do work. He needs to do this so his bones can start to rebuild and heal.
I have been diagnosed with cancer 2 times and have had many let downs and scares throughout all these years, soon to be 19. The first thing you feel is shock, then comes the fear,trust me it can be overwhelming. I don't know your fathers age, but I would guess that we are close in age. Tell him , this is not the treatments that we know about from our younger days, most likely he will not even loose his hair for these, just a little tired and some bowel issues. Longer term they will cause neuropathy, but this to can be managed.
The questions most cancer patients need an answer to is (Why Me),(How Bad) and (how Long do I have).
My answers for myself that helped me; Why Me- The Lord has said that he is our best friend and would never leave us, it took me a long time to understand how a friend could allow this to happen to another friend, he has because he knows that I am strong enough to carry it, while others may not be. I don't know if this is right, but I know it has helped me put this monkey back into his cage.
How Bad, My question to my doc was what stage am I in. Mind you we are friends, he was my doc for 15yrs. His answer was, why does it matter, I am going to use the same treatments for all the stages. He has since retired, we spoke about this after his retirement and he said that there were certain treatment options that were the standard proticall and he used those. The side effects are well known and because of this they are safer. Not only that but my wife would hang him if he messed me up.
How Long?, The internet gives us 2-5yrs, however this is not correct. He told me not to try to read up on anything as it was all out of date. I read, real scary stuff. After 1 yr of reading everything I could I found out that he was correct. They are still waiting for the final results of the trials and studies. Some have seen remission in excess of 10years and still going. He told me that in the near future this would be chronic like sugar. Trusted him all those years and still had to check, he earned and deserved my trust.
Your Dad is still in the Oh-Shit phase, he will not be able to put that part to rest until he gets past some of the treatments. Depression is a part of this and it can hit with a big hammer, it is hard to deal with, because there are times when it is over whelming. He needs to give this a try for you and his family, I would most likely have given up a long time ago if it was just me, boy would I have been wrong to do that.
Talk to him, ask him to try it for you, tell him to get on here, we all care and have either been there or are in middle of it.
Explain that all is not as it seems, we are surviving and living mostly normal lives. The old saying, no pain,no gain does'nt apply here, its all to gain with no pain. He needs to take control of himself, learn everything he can and look, wait, hope for the best. All things can and do happen.There is no garrantee of success, and yes things don't work for everyone. Some have worse side effects or can be alergic to the drugs, but you don't know until you try, for this reason we must try. I know that this is terminal (at the moment), but when you consider that we are terminal the day we are born its not so bad. It is a wake up call for us to realize that this life is short, so we need to kake the most of it.
I hope I have given something to help and I hope you don't mind some of my refrences. I just know that this is hard and there is no correct answer for all of us.But I know that there are always some answers that we can all use.
Rodney

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Thank you for your responses. They are helpful. I will read them to him over the phone. He isn't much of a computer person and doesn't have internet. I plan on getting internet when I get there and getting him connected on here. I think it would help him out tremendously. I will be with him in two weeks. This is a new diagnosis for him and so all of it is so new to him. I am sure my step-mom will go with him to his appointment, but I will ask and bring up recording it so that I can hear it. I think that would help me with my anxiety. He hasn't had the bone marrow biopsy yet, but from what I read, it looks like it is protocol. Thank you Rodney for the lengthy post about your experience. It was touching and reassuring even if the answers aren't peachy. I am glad that you are a survivor and still around for your family. I bet you are in their list of blessings. Thank you Tammy, I know he will be encouraged to hear about walking 2 to 5 miles a day. That is a big concern for him, since this last week he went from standing only 5 minutes to standing up to an hour and finally walking without a cane.

Thank you again everyone.

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VERY NORMAL, man did I go through the valley of death, suicidal fantasies and all. My mm was bad, final stages, one of the highest numbers my doc had seen and the chemo was horrendous for the first couple of months. Even though I am young (44 at the time) and had a beautiful 7 year old daughter who needed Mom to stick around, the pain was so horrendous I was not sure if I could endure the journey and death seemed the easy way out. Now, a year and a half later, 9 cycles and two transplants, still not in CR but feeling amazing compared to, I am sooooo very happy to be here and that I stuck it out. If your dad feels life is still worth living the fight will be worth it, but it is a decision only he can make and you should not force him. I did have to take anti depressants and anti anxiety meds and they worked beautifully. Now I am back on chemo and it hardly affects me. I work, do yoga and enjoy my friends and many new ones I made through MM. There is plenty of Life left even when you have such a nasty cancer as MM, but you gotta want to :>) My Love and prayers are with you :>)

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Sorry to hear about your dad and happy he is getting treatment.My husband has had chemo…then stem cell transplant and is now finishing two of revlimid.he has has some very rough periods and dealt with low immune system ,low WBC counts and at times had to to be given a weeks break from meds to build back up.It’s important to communicate any thing different to your doctor though even when it is expected just in case it is something else they need to adjust or be aware of.My husband is doing very well ,stays very positive and goes with the ups and downs with his eyes on the checkered flag!he tries to exerts ice when he is is able…we walk / has a positive attitude and a deep faith in the power of prayer/eats nutritious
Y/and rests when he needs to. This , I believe ,has helped in his recovery.There are so many wonderrul treatments for myeloma now and it is so very hopeful. God bless you and we will be praying for you all!!



She said:

Thank you for your responses. They are helpful. I will read them to him over the phone. He isn’t much of a computer person and doesn’t have internet. I plan on getting internet when I get there and getting him connected on here. I think it would help him out tremendously. I will be with him in two weeks. This is a new diagnosis for him and so all of it is so new to him. I am sure my step-mom will go with him to his appointment, but I will ask and bring up recording it so that I can hear it. I think that would help me with my anxiety. He hasn’t had the bone marrow biopsy yet, but from what I read, it looks like it is protocol. Thank you Rodney for the lengthy post about your experience. It was touching and reassuring even if the answers aren’t peachy. I am glad that you are a survivor and still around for your family. I bet you are in their list of blessings. Thank you Tammy, I know he will be encouraged to hear about walking 2 to 5 miles a day. That is a big concern for him, since this last week he went from standing only 5 minutes to standing up to an hour and finally walking without a cane.

Thank you again everyone.

8

Thank you! Dad is for the most part staying positive now that he started treatment. He had a rough patch, but now that he is on the up end, he is finding ways to look at the positive to the situation. The Dexamethasone gives him insomnia, but he is making jokes on how he will use those sleepless nights. It is so nice to hear your encouragement.