[chris0830]

Parents upset by father's relapse - how can I help?

by chris0830 on Sat Mar 14, 2015 2:25 pm

Hello all,

I had recently posted about my dad earlier in the week. His Revlimid main­te­nance isn't working a little over a year post stem cell transplant (SCT).

Dad is absolutely convinced that, because Revlimid maintenance failed, NOTHING else is going to work. He will be stating a Velcade / dex regimen this week, and I'll be going to see his oncologist with him on Thursday.

I'm very worried about both my parents' state of mind. Mom and Dad live together, and mom called me crying today, saying she couldn't take much more of his negative attitude. I fear her health (blood pressure / stress level) is being negatively affected by the circumstances. Keep in mind, neither will attend local support groups to talk with others going through similar cir­cum­stances. I live about an hour away and have my own family to take care of, so I'm not able to be there as much as I would like, but I do try to check in once a week, bring the grandkids over, and try to cheer them up.

What can I tell Dad and Mom to reassure them that, just because Revlimid has stopped work­ing, it doesn't mean that Dad will be on an absolute downward spiral? I know with multiple myeloma, there are no guarantees, yet I've already told him there are several other drugs for multiple myeloma patients in the pipeline and more on the way to being approved. (Trying to keep it positive) They just are both hung up on the Revlimid failing.

I hope it was ok to post this here ... I just don't know where else to go for advice

Thanks so much....

Christa in CT

[NStewart]

Re: Parents upset by father's relapse - how can I help?

by NStewart on Sat Mar 14, 2015 5:54 pm

I'm sorry that your parents are in the emotional state that they are both in and that your father doesn't believe that any treatment will work since Revlimid maintenance didn't work.

First, even if your father won't go to a support group, encourage your mother to go without him. Second, have one, both, or you tell the oncologist what is going on and get a referral for some sup­port counseling. Again, if your father won't go, your mother might. Also, talk with the social worker at the cancer center about what is going on.

But, utmost is the fact that your father's oncologist needs to know your father's emotional state and lack of confidence that the new treatment regimen will work.

Good luck to you in helping your parents to figure this out and get to a good point,
Nancy in Phila

[chris0830]

Re: Parents upset by father's relapse - how can I help?

by chris0830 on Sat Mar 14, 2015 7:10 pm

Thank you Nancy for your reply. I am definitely going to have a frank discussion with my dad's oncologist on Thursday about his emotional state the past few weeks especially. I'm hoping words of reason coming from the doctor will have a calming effect.

Thanks again!

[Tracy J]

Re: Parents upset by father's relapse - how can I help?

by Tracy J on Sun Mar 15, 2015 1:18 am

I would also consider asking for a palliative care consult. I know most people think palliative care is only for end-of-life issues, but that's just not true. Palliative care is for anyone dealing with a life-threatening illness, whether you are at the beginning, middle or end. Their special area of focus is the emotional state of the patient and family, the values of the patient, and the social circumstances of the illness that may get in the way of meeting those values. In other words, all the very important stuff that the oncologist typically doesn't have time to talk about because they are focused on nitty gritty medical treatment.

Here is an article from a website for doctors, sent to me by a doctor friend who is a palliative care specialist.

I'm considering asking for a palliative care consult for myself. I think I could use it.

Your father's state of mind makes me think of something I heard from a 36 year old neuro­sur­geon who was dying from metastatic lung cancer:

"One of the most difficult jobs for both the doctor and the patient is to find that kind of band of optimism that's not so optimistic that it's unrealistic, but that's not so pes­si­mistic that it's actually crushing the meaning out of your life as you are living it."

Source: Paul Kalanithi, "Before I go - Time warps for a young surgeon with metastatic lung cancer," Life Time, Spring 2015 (full article)

I think I'm struggling with the latter - I do feel that my anxiety and pessimism are crushing the meaning out of my life as I'm trying to live it. But I have certainly known others who have fallen the other way. I think the band he is talking about is more like a tightrope, in that it's extremely thin, scary, and it requires a huge expenditure of energy and attention to stay up there. It's exhausting.

Maybe if my myeloma treatments got to some kind of steady state, I wouldn't struggle so much with the question of the meaning of my current existence, but I haven't gotten there yet.

[Cheryl G]

Re: Parents upset by father's relapse - how can I help?

by Cheryl G on Sun Mar 15, 2015 4:39 pm

Hello Chris,

I am so sorry to hear of how distraught your parents are and the effect on you that all of this is having. I am also glad that you asking for advice on how to handle the situation.

You have gotten a lot of good suggestions already. I just wanted to add that you may want to think about which solution(s) that have been suggested will be best for your parents, given who they are and what they are like, and focus on those.

I think the solution in this kind of situation differs from one person to the next. Some people will find it helpful to get support from a close friend or family member. Others will find it helpful to have more information from their physician or other resources. Still others may find it helpful to speak with a professional, whether it be a social worker, therapist, or clergy.

Just think carefully about what will probably work best for your parents, given what they are like, and given what the different approaches to the problem involve. Also, recognize that what may be best for your father may not be what is best for your mother.

Personally, I think it would help your father a lot if his doctor sat down with him and explained to him what the plan is for treating your father's myeloma for the next several years. This will help your father to see not just that there are many options still available to him -- and I think there are many options -- but it may also start a good discussion about which of the options he may prefer. This also may nudge your father's doctor to actually develop a plan for your father's care, if the doctor hasn't really done that.

I hope this helps a bit. Please let us know if we can be of more help.

[chris0830]

Re: Parents upset by father's relapse - how can I help?

by chris0830 on Mon Mar 16, 2015 9:29 am

Thank you, Tracy and Cheryl, for your replies.

Tracy – That quote is very powerful, especially as how it relates to a multiple myeloma doctor / patient relationship. I know initially we were told by our specialist to view myeloma as "something that we need to MANAGE, "much like high blood pressure or heart disease," which at the time did make everything seem much less scary and life threatening.

I do believe dad is struggling with the latter part of the quote also, yet, in his case, it is con­sum­ing him almost every minute of every day. I really think your palliative care suggestion is wonderful and I plan on calling the department at Yale New Haven today, Just hope he will go for it. Maybe he will if I give him no other option!

Cheryl – Dad may go for talking to his church pastor for support, as he is an active member and has many long time friends in the congregation. He may actually go for this!

Also, I think you are correct in that it would help tremendously if his doctor explained to him what his long-range plan would be with meds. I think what is so difficult specifically about having multiple myeloma for my dad and my mom is the unpredictability factor involved. So I think discussing a game plan will help a lot. I will try and get as many answers that I can when I go to his appointment on Thursday.

Again, thank you so much. Your responses mean a lot.

[NStewart]

Re: Parents upset by father's relapse - how can I help?

by NStewart on Mon Mar 16, 2015 2:05 pm

Chris-

I know that knowing what my doctor's game plan is for me if / when my current regimen starts to not be so effective helps me tremendously. Each time I see him, he is pleased with how things are going, but he also lays out his thinking and at what point he would change things up.

If your father would talk with his pastor, that would be great! Any person who has experience talk­ing with someone who is in crisis would be good. A pastor who is familiar with your father and mother would be really good. And, the oncologist talking with your father and mother would be so helpful.

Remember what it was like when your father was first diagnosed and everything was scary? I would bet that your father didn't have much hope at the time. But, with treatment and feeling better, he began to be better emotionally. He has had a setback and is in that scary place again. Hope­fully, his new treatment regimen will bring things back under control and his emo­tion­al state will again improve.

That doesn't mean that this couldn't happen again and that getting some outside help isn't ap­pro­pri­ate. Anything that will ease your father, and mother, along the path to being less stressed by his myeloma is appropriate.

Nancy in Phila

[chris0830]

Re: Parents upset by father's relapse - how can I help?

by chris0830 on Tue Mar 17, 2015 12:22 pm

Hi Nancy,

It sounds like you are very fortunate to have an oncologist with great communication skills. I'm glad he is pleased at how things are going with you.

Thank you for your input, I really appreciate it and it's helpful.

Christa in CT

[Daisy]

Re: Parents upset by father's relapse - how can I help?

by Daisy on Tue Mar 17, 2015 9:46 pm

Chris, if you are concerned about being totally frank with your Dad's oncologist (with your Dad sitting right there), consider writing out your thoughts and concerns and give the note to his nurse or APN and ask that the oncologist read it before coming into the room to visit with your Dad.

[simcha freedman]

Re: Parents upset by father's relapse - how can I help?

by simcha freedman on Wed Mar 18, 2015 9:28 am

77 year young patient. Diagnosed 3 years ago. Revlimid worked for 20 months. Now on Velcade for about 13 months. Showing some signs of possible relapse. Other meds available and big one coming up in about a year.

Think positive. Plenty of stuff in the arsenal and new stuff coming out all the time.

Exercise ... eat well ... make each day count.

Live.

Love.

Simcha