We had a doctor appointment today. We had a new MRI to show him, but
when I asked what the report actually meant he said, "those are terms
for us (the doctors), you don't need to know." (As far as I can tell,
there is active disease in my husband's spine and some compression of
the sac around the spinal cord, but the doc wouldn't discuss any of it
with us. I didn't press only because we have an apointment withthe
surgeon on Thursday, when I hope to get more info). When my husband
asked the doc what he should be watching out for in terms of PN he
said, "you're not a doctor, you dont need to be watching for symptoms.
all you should do is tell me what you're experiencing." (It does seem
that my husband is developing PN, but I was really struck by the doc's
reluctance to tell us what, specifically, to watch for.) Although a
couple of months ago the doc had agreed to montly creatinine and
electrophoresis testing, last month he refused to do electrophoresis
and this month tried again to create a problem. When I reminded him
he'd agreed to it he tried again to say that it wasn't for the
patient's good to know too much, and that regular creatinine testing
was unnecessary. He did acquiesce at the end, but only after i told him
that withholding information was "cruel" and that it's a terrible thing
not to know what is going on. He looked slightly taken aback at that,
which is a first.

I worry that I am pushing my husband beyond his
own comfort zone, that i want moreinformation than he is comfortable
with. But he insists that's not the case, it is just that he feels a
bit trapped by the doctor .

The doc today said that lenolidomide
should be saved for relapse, and not used up front even though toxicity
was less than with Thal. Any comments? I'm really beginning to be
concerned about the effects of Thal, even though we've avoided the
worst of it so far (I think).

 Lisa

How Doctors Think by Jerome Groopman, M.D. published in 2007 is great- written by an M.D. who became a patient. Gave me insight into how to communicate with my Docs.

Thanks David for the support and insight. I do feel pretty stymied,
and increasingly unsure as to how to be the best support for my
husband. Sometimes I think part of him WOULD prefer not to know (and
it's easier not to know if you don't get regular electrophoresis
readings). But I don't think that's the best way to keep on top of his
disease. And I don't think he does either. But even for me it's
seductive, those days when I'm so busy that I almost (but not quite)
forget we have a third party in our house - the unwanted guest of
myeloma. Forgetting would be nice. But very dangerous, I suspect.

 I"ve
read How Doctors Think too. It helped me with our surgeon, but not with
the oncologist, because I can't seem to penetrate the oncologist's
ego.The only way to get along with him is to agree that he is God, and
I just can't do that.  

I found it interesting that when I
asked the oncologist to explain something form the latest MRI report he
said, "that's for us doctors, you don't need to know" but when I asked
the neurosurgeon (who has just as much right to a big ego, maybe more,
because anyone who does brain surgery has got to be competent) he
explained the technical terms to me and asked me what else I would like
to know. He also answered questions that I think he thought were kind
of stupid, but he didn't make me feel stupid. (I asked whether there
could still be infection deep in the bone, and he said that if there
were infection that there would be some symptom of it; that there
wouldn't be a silent infection for so long without it showing in some
way).

We just found out that the latest xray shows "very good"
results. My husband said the surgeon sounded sort of surprised on the
phone as he described new bone being laid down, creating a bridge, and
the fact that the vertebra appears to be completely recalcified. The
MRI shows a high intensity signal area but they don't know what it is;
surgeon said it could be liquid. (Last MRI had suggested that the tumor
appeared to be partly replaced by liquid, which is a good thing I
gather). So, even though we dont' know the M spike right now, my
husband's spine is aparently doing ok. (they were very worried about
slippage in my husband's spine, and another major, and dangerous,
surgery has been in the wings for the past 15 months, but the more time
that passes, the more hopes we have of avoiding it). 

Amazing
how a little bit of positive news changes everything. I think that's
part of what is in the oncologist's mind, to keep my hsuband from bad
news, but even if his intentions are good, he destryed our trust early
on through his lies and inconsistencies, and so his attempt to withhold
information just increases our anxiety. I wish there were a way to
explain that to him. But if I point things out  he'll hit the roof
and that won't help anything. 

I belive in focusing on the positive but I also have seen from
personal experience with other family members and friends who had
cancer that a positive attitude all by itself is not enough. It seems
like a fine balance and I don't always know how to maintain it.
Yesterday I ran into my husband's surgeon in the grocery store (always
nice to see that doctors are normal people who have to go shopping like
the rest of us!) and I mentioned what my husband had told me
about the xray results. I'd say the surgeon's reply to me was a whole
lot more measured than what my husband had implied. (He said the xray
was ok, but he didn't give any indication of the enthusiasm or surprise
my husband had mentioned). So now I'm backto feeling that maybe
my husband needs to maintain a positive face on things that aren't
necessarily that positive, which again calls my own role into question
(how much information to push for, when the information might be
unsettling. )

As for the oncologist, no, i really don't
think that he is really opening up with us. When we play the role
of respectful patients just following insturctions and not asking too
many questions he's relaxed and jokes, chats, boasts, but the slightest
hint of a question or an opinion and he gets rigid and puffed up and
starts throwing around the phrase "you're not doctors". I can't tell
you how many times he has said that, even when it is completely out of
context. I think he views himself as a good doctor who has his
patient's interest at heart, but he is easily offended and has a knee
jerk reaction to any indication that we want to have information or
input into decisions.

The thing that bothers me most is
wondering whether on some level, even a mostly unconsious level, the
oncologist is on target with keeping a nice face on things and not
giving out too much unsettling information to my husband. It's a
paternalistic approach but sometimes I wonder if I should let it be,
more than I have. Can I ask those of you MMers on this list, is this
something that you struggle with yourselves - on some level NOT wanting
to know too much? Or, other caregivers, is this an issue that comes up
for you?

I'm very grateful for the support and insight on this list!

Lisa

I can relate to you on this topic, Lisa. My husband does not care to investigate MM, does not want to look at his lab results, and only attends our local MM support group meetings because it's important to me. He says he doesn't want to talk about the disease and that he totally trusts that his local onc will do what is best for him. I wish I felt the same - but with the number of patients he has to see in order to many any money I can't just sit back and trust that he will catch it all. So I research and ask for test results to reach my comfort level, but I am cautious about what I will ask the onc in front of my husband. I did ask my husband if he minded that I need to do more ... and he is ok with it as long as I don't make him talk about it. (Although I do think he is reassured knowing that I AM looking at things and will ask a question if I think it's warranted.) He's in remission now and I really do think it is easier for him psychologically to try to just put the MM out of his mind. That's his personality type and I'm not going to be able to change him at this stage of the game (he's 67 and we've been married for over 38 years). I've seen his IgG numbers increasing each month lately and it scares me ... but I haven't brought it up with him. I just make sure to look the onc in the eye at each appointment and gain the reassurance that he's watching those numbers, too, and - so far - no treatment is needed.  One day at a time.

Dianne in Henderson, NV www.caringbridge.org/visi...

Hi,

   Lisa - concerning your post on 6/16 - I think a lot of folks don't want too much information about their disease - I'm not sure why though. Perhaps it confuses them (it is a very complicated one!) or upsets them to think about it, or they want to be in denial. My husband, the patient, can only absorb so much information about his myeloma. He's a smart guy, but he relies on me to explain his lab results to him and to ask the Dr. questions concerning those results. We talk about this a lot. He appreciates my rather high level of involvement in the details of his myeloma - it takes the burden from him - and since I'm a clinical laboratory scientist by education and training, it's an appropriate role for me. I ask my husband if he wants the information "filtered", or if he only wants to talk about myeloma on Tuesday evenings from 8-9 pm. or if he wants me to shut up and "get a life", but he really does appreciate my involvement. A coworker of mine whose mom is battling lymphoma told me that I need to let David "own his disease" and battle it...I'm not really sure what that means. Yes, he has cancer, but really, I share it with him...it's my cancer too, as well as our 3 children's. I think it would be difficult for me if he wanted to be in denial about his illness, but, as it stands, I think he is comforted by my caregiver/advocate role. But, yes, sometimes  when I'm up until 1 am researching on line I think I really do need to "get a life" !!!!

Patricia 

   

Since this issue seems to be of interest to lots of members I thought that I would relay a statistic that i came across the other day on the subject.

Lee Rainie of the Pew and the American Life project reported that of the many people who search for information about cancer on the internet approximately 46% are searching for info for themselves while 64% are searching for information for other people.

There are more people out there using the internet to learn about cancer that are caregivers than survivors.

The Galen Foundation and beating-myeloma.org are based on the concept that survivors live better, longer lives through interactive health communication (social networking like this site). This statistic indicates that survivors rely on our caregivers for this interactive health communication. Thanks to the many caregivers out there.