Hi Beth:
Yes, the memory issue is very difficult. I am trying my best to compensate
such as eating almonds, cherries, doing crossword puzzles, word searches, etc.
But at the end of the day, there is much I just can't pull out.
As for traveling, I relate. After I was diagnosed, we traveled back and forth
to Miami because our daughter was in college at University of Miami. My sister
lives in Orlando and her husband, who passed away a year ago July 25th, was
quite ill. Every time I got on a plane, I developed some sort of infection,
sore throat, etc. Then, about a year ago, we went to Orlando and the bone pain
in my legs became unbearable. Don't know if it was the cabin pressure or
something else but I needed a wheelchair to get off the plane. This has
happened a number of times. Naturally, the doctors don't think it is related
to the Gleevec but I know it is.
We've been a blessed family. Traveled all over the world before I got sick.
My husband has been to every continent and I've been to most. We've seen
Russia and the Ukraine, Greece, Turkey, Europe, South Africa, Kenya, China,
Japan, Thailand, Indonesia, just about all of it. Israel in May was my first
overseas trip in more than 5 years. I was concerned how I would manage but
thankfully, it was perfect. No illness, no problem walking, not even bone
pain. We are looking at retiring there when the time comes because we love the
country and have family and friends there. As born Jews, we are granted
automatic citizenship and health care is automatic and free and some of the
best doctors in the world are there. Giora Sharf, head of CML Israel
Advocates, is a friend so to move there and know someone with CML would be most
helpful. Of course, our daughter is here but Israel just might be it because
if I can't work, and I believe a time will come when I cannot, Obamacare isn't
going to help. I'm 61 so Medicare is a ways off for me. The cost will
bankrupt us so Israel it will be.
If there is really some place you want to travel, check it out with your
doctor. Make sure you go somewhere that has excellent medical care and get
travel insurance so that if you need to cancel you won't be out the money. We
also have medical insurance that we bought so that if one of us gets sick
outside of Maryland, the costs of everything, including flying home, will be
covered. Try to make that dream come true because it is something you want so
badly. Where do you live? Maybe you can come to Baltimore and stay with us
for a visit. I'd love that.
Know what you mean about the pain and fatigue. I have tons of arthritis which
I know from having MRIs. The Gleevec has elevated it beyond belief. I don't
take anything, although my primary care wants me to talk to my onc about
Meloxicam. I looked it up and the side effects seem like it is not worth it.
I just live with the pain because I don't know what else to do.
Hope you had a great walk and, as always, wonderful to talk to you.
Much love,
Marcie
-----Original Message-----
From: bkbarney <bkbar...@aol.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sat, Jul 13, 2013 2:44 pm
Subject: Re: [CMLHope]
marcie,
so well said....thank you for sharing.....
It is the long term on going day in and day out impact of the illness, and the
side effects that over time make this illness so difficult for so many. I too
have lost a great deal of short term memory, it's all drug related...and I am
51, used to have a photographic memory which I relied upon in my work, and
since taking these meds, it is no longer present. The daily pain, muscle
fatigue, weakness, makes life and projecting future travels etc..very
challenging. I too have a positive attitude, live with grace, and gratefulness
as a way of life, but still find it challenging when people say you look good!,
and I feel so horrible sometimes...I want to travel...I have a passport that
has no stamps on it yet and a bucket list of places I long to see, but the idea
of traveling seems at this point impossible....because of how I feel in my
body..so there is a lot of grief....working on feeling better and creating new
dreams and actually living them...I have accepted the physical beauty aspects
as a woman in our culture, the hair and skin and eyelashes eyebrows lost
etc...it' sjust the desire to feel well! to override the side effects and
live!!!!! so those are my thoughts for today!
going to go take a walk on a lovely day!
Beth
-----Original Message-----
From: margood18 <margoo...@aol.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sat, Jul 13, 2013 8:10 am
Subject: Re: [CMLHope]
Hi Millie:
I've lost a lot of eyelashes and brows, too. Even have done false lashes when
I had a wedding to go to. Part of the problem I see with people is that almost
everyone knows someone who has had cancer. Most of those patients either had
infused chemo and/or radiation. So they were bad but a point came where they
recovered and life went on. For us, at least for me, there is no chance in the
near future that I'll be off of Gleevec. Our problems and side effects often
take time to occur, memory loss is one for me.
I had a mind like a steel trap. Now, I can remember long term things but short
term is going faster than a speeding bullet. People who don't get it tell me
it is normal at my age to start losing your memory. I know that as you age
your memory may worsen but at 61, I don't think so. Plus, I can tell it is a
rapid increase in what I am forgetting.
My bone pain and muscle cramps are very severe, and naturally the fatigue is
far worse. I wonder if one day sooner rather than later I'll be in a
wheelchair or on a walker. Sometimes I can't zip up a dress or coat, even if
it is front zip. If it is a back zip, forget it. My husband needs to be here
to help with that. I can't hook bracelets or necklaces. None of this is major
because I'm so grateful to be alive. But it is still a quality of life issue.
I tend to have bad Gleevec stomach. I try to stay away from foods that trigger
it. But being from Maryland, I love steamed crabs. I eat them but somewhere
within a 15 minute drive to my house so I can use my own bathroom when the
diarrhea hits. There is no spontaneous planning because I always have to look
at how far I'll be from home because of this.
That's the kind of stuff I'm talking about that people don't get. They see me
and think, well she works, she looks pretty good for someone with leukemia,
must not be too bad. And for the most part, they are correct. I have a
positive attitude and feel very blessed to have an illness that is manageable.
CML has made me appreciate every single day.
Hope your results from the biopsy come in quickly. I know my bone marrow
results came in yesterday but my onc didn't call. He and I have a wonderful
relationship so I'm assuming that he just didn't get a chance to look them
over. He is one of the team doctors for the Baltimore Orioles and he may have
been at the game yesterday. Normally I don't worry about the results but he
has agreed that if they are good, he's going to try and take me down from 600
mg of Gleevec to 400 for a trial period of 3 months. Hoping that will help
with the side effects. If not, I'll just deal with it.
Best of luck, have a great weekend, and I think you are a wonderful person and
terrific friend!
Marcie
-----Original Message-----
From: C.M. Houtz <ho...@ptd.net>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Fri, Jul 12, 2013 10:08 pm
Subject: Re: [CMLHope]
Hi Marcie
I also wear a wig when I go out, and at times around the house, but
don't cook with one, and, usually, don't wear one around close friends. My
hair is a mass of fuzz and I do have a gal that comes to my house and trims it
every 6 weeks, but there isn't much to take off...Mostly in the back. My
eyelashes are gone, and my eyebrows thinning a lot. No, most people don't
understand how we feel, and on here, we can share these things. I have a
friend....who told me once that if I'd take long walks it would be good for me.
Well, I'm sure that it would, and I would love to be doing that, but my legs
won't , so I'm stuck in my jazzy (elec chair) most of the time. I still can
manage some with a walker, but it's getting to the point where I have to have a
transport chair...and someone to push it when I go out. That makes it
difficult for me to attend things with my friends, etc. My arms don't work
well either...about the same as my legs. I can't lift my arms, especially the
left one without a lot of pain. I do what I can do, but, unless you have these
health issues, you don't understand that it isn't something that we choose to
have. My friend meant well, but just doesn't get it. Most of my very dear
close friends have suffered from some type of Cancer. They understand much
better. I love turbans, but have trouble putting them on and keeping them on.
I think they look neat. I wouldn't wear them out, but around the house I
would. I've never tried to bake with my wig on, but will think about it now
that you've warned me. Mostly, I just laugh at how I look as I can't do much
about it. Tasigna has left my skin so dry and wearing makeup just doesn't
work. Oh well, it is what it is.....right? We just do the best that we can.
My oncologist is going to be upset as I didn't get the results of the biopsy
yet and I must see him on Monday. He's such a love, and would hate to ever
change doctors. You don't find doctors that call you when they need to talk to
you (they have their staff do that), but since all of this liver stuff has
come up, he calls me often. I also can call him and actually get to talk to
him. I am truly a lucky lady.
You take care of yourself, and I'm so glad that we can share things with one
another.
Many hugs,
Millie
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