My phone was running low on memory today and I had to delete some text messages to clear space. I deleted some from a friend with METS who recently passed away, and it made me sad. I also realized that I haven't seen anything posted anywhere from another friend with METS since June, and she hasn't responded to a text I sent her last week. I'm worried about her. We didn't talk all summer, kids out of school and all.
Showing posts with label METS. Show all posts
Showing posts with label METS. Show all posts
Saturday, August 11, 2012
Thursday, December 9, 2010
Loss
We're into the holiday season, and, like every other cancer, and especially metastatic cancer patient I know, I am saddened by the death of Elizabeth Edwards, and find myself contemplating mortality and my possible time allotment.
Before Thanksgiving, we lost a vibrant voice on Inspire.com, in Australia, to her MBC. Shortly after Thanksgiving, I lost a dear friend locally to the same. Like Elizabeth Edwards, she decided that the chemo they held out for her was not worth suffering through, and chose to live her last days without chemo side-effects. Her funeral is this Saturday. I can count on one hand the funerals I have attended in my lifetime, but I will be there at hers, to show my support and love, for her and to her family.
2 days ago, the writer of a blog I follow passed away quietly from her MBC, after struggling for weeks with her lungs. Another dear blogger posted this week that she lost a member of her MBC support group, in Canada.
Not feeling like a very survival-conducive season.
My dear doctor was on the news yesterday morning, interviewed about metastatic breast cancer and the passing of Elizabeth Edwards. He was fabulous, of course, spoke with clarity and confidence, as though he were used to being in front of a camera.
I see him again just after Christmas, and after my crappy visit last month, about which I did not blog, I really need a break from the office. I realized though, that I can take a break from seeing him, but I don't think I can take a break from having my power port flushed. I would really like to not go to the office at all for a couple of months, but that's not going to happen. I am going to take a break from the Zometa. I think more and more they are realizing that problems with osteonecrosis to the jaw are not as rare as they thought, and this month's treatment will be #10 for me. I had originally bargained to do a year, then go to quarterly, and this is close enough. January brings a deductible to meet, and even after it is met, I cannot afford the monthly cost of the treatments. I'll discuss it with my doctor. The 9 treatments I've had thus far, combined with the aromatase inhibitor, Femara, have worked just as they are supposed to, and my last scan was good.
This is turning into a boring blog post. Sorry. Last night as I was falling asleep, I thought of several things to write, but today they are no longer in cranial residence.
I think where it leaves me, besides sad for the families and the loss of friends, is ogling the idea that a good scan today doesn't mean it can't spread tomorrow.
And to reinforce the notion that I may be a hoarder, I spent time yesterday worrying about what will happen to my stuff when I'm gone. Hoarding from beyond the grave, yet too tired to do anything about it now.
I'm almost too tired right now to cry over these recent deaths.
I did have a little cry today over feeling so tired and financially helpless, brain scattered and constantly hungry lately. Half the weight I've gained this year, it seems, has gone straight to my neck and chins. I look more and more like Ursula the Sea Witch with every passing trip to the scales at the doctor's office. I expect to awaken any morning now and find my face a lovely shade of pale lavender.
I am thankful, this Christmas season, however, that my voice is still holding up. I can still hit the high notes, and plan to be somewhat a germophobe for the next two weeks, as I have a fabulous solo line in one of our Christmas songs. A fellow choir member commented to me last week that my voice seems to be fuller this year.
I think it may be all that extra chin room.
Before Thanksgiving, we lost a vibrant voice on Inspire.com, in Australia, to her MBC. Shortly after Thanksgiving, I lost a dear friend locally to the same. Like Elizabeth Edwards, she decided that the chemo they held out for her was not worth suffering through, and chose to live her last days without chemo side-effects. Her funeral is this Saturday. I can count on one hand the funerals I have attended in my lifetime, but I will be there at hers, to show my support and love, for her and to her family.
2 days ago, the writer of a blog I follow passed away quietly from her MBC, after struggling for weeks with her lungs. Another dear blogger posted this week that she lost a member of her MBC support group, in Canada.
Not feeling like a very survival-conducive season.
My dear doctor was on the news yesterday morning, interviewed about metastatic breast cancer and the passing of Elizabeth Edwards. He was fabulous, of course, spoke with clarity and confidence, as though he were used to being in front of a camera.
I see him again just after Christmas, and after my crappy visit last month, about which I did not blog, I really need a break from the office. I realized though, that I can take a break from seeing him, but I don't think I can take a break from having my power port flushed. I would really like to not go to the office at all for a couple of months, but that's not going to happen. I am going to take a break from the Zometa. I think more and more they are realizing that problems with osteonecrosis to the jaw are not as rare as they thought, and this month's treatment will be #10 for me. I had originally bargained to do a year, then go to quarterly, and this is close enough. January brings a deductible to meet, and even after it is met, I cannot afford the monthly cost of the treatments. I'll discuss it with my doctor. The 9 treatments I've had thus far, combined with the aromatase inhibitor, Femara, have worked just as they are supposed to, and my last scan was good.
This is turning into a boring blog post. Sorry. Last night as I was falling asleep, I thought of several things to write, but today they are no longer in cranial residence.
I think where it leaves me, besides sad for the families and the loss of friends, is ogling the idea that a good scan today doesn't mean it can't spread tomorrow.
And to reinforce the notion that I may be a hoarder, I spent time yesterday worrying about what will happen to my stuff when I'm gone. Hoarding from beyond the grave, yet too tired to do anything about it now.
I'm almost too tired right now to cry over these recent deaths.
I did have a little cry today over feeling so tired and financially helpless, brain scattered and constantly hungry lately. Half the weight I've gained this year, it seems, has gone straight to my neck and chins. I look more and more like Ursula the Sea Witch with every passing trip to the scales at the doctor's office. I expect to awaken any morning now and find my face a lovely shade of pale lavender.
I think it may be all that extra chin room.
Thursday, April 8, 2010
Day of Art at Banner Desert Medical Center
Twenty-four hours until my tax appointment. Am I ready? Almost. Should I be working on that instead of blogging? Probably.
Yesterday I participated in the Day of Art at Banner Desert Hosp, sponsored by the oncology department. I guess they do it twice a year. The paintings done at these events line the halls of the oncology unit in the hospital. I saw them when I was hospitalized in August, and thought I could never do something sparkly and positive, but really wanted to do something.
So I did. It is a version of what I worked up on the computer.
Every painting has a story underneath it on the wall, written by the artist. Hopefully I can find where it ends up being hung, and get a picture of it framed and on the wall.
This is the dirty pink underbelly; the part that exists without glamour or glitter, where the only pink ball caps are the ones dropped in the gutter, stepped on and run over.
It is a dirtier shade of before, a bit soggy and cloudy, and for some of us, the new reality.
It is a cold rain on the pink parade.
At one point when I started on the umbrellas, I feared they looked like pink pumpkins, then boobs. Thank goodness they turned out umbrella-y enough.
Mostly old people there, several people I knew from the support group, several with METS also. Later in the afternoon a couple of younger people came, and it always breaks my heart to see women so young battling cancer.
It was outside, in a garden area between buildings. We had very nice weather and shade most of the day. I had some help at the end with some of the shading. The counselor who facilitates the support group took pictures of each of us with our painting when we were finished. I'm sure that's a lovely shot, after being in the breeze and working and concentrating all morning. It started at 9:00am, but I didn't make it there until about 10:00am. They had a light breakfast, and then served lunch as well (yum!) I panicked a bit midway, worrying that I wouldn't be able to finish by wrap-up time (3:00pm), but I actually finished by about 2:30pm.
I got compliments on my painting, and said to the counselor, 'yeah, they haven't read the story part yet'...haha. One of the other METS ladies understood it though. The counselor said she was glad I did it, and that it needed to be said. I agreed, and shed my only tears of the day.
It's not all rainbows and puppies and pink ribbons.
The new image I have in my mind is being piled upon by all the things I have to deal with, that keep me from focusing 100% on the last thing in the pile; having cancer and taking care of me. That might translate more universally across the cancer lines. I'll work on that idea for six months.
Yesterday I participated in the Day of Art at Banner Desert Hosp, sponsored by the oncology department. I guess they do it twice a year. The paintings done at these events line the halls of the oncology unit in the hospital. I saw them when I was hospitalized in August, and thought I could never do something sparkly and positive, but really wanted to do something.
So I did. It is a version of what I worked up on the computer.
Every painting has a story underneath it on the wall, written by the artist. Hopefully I can find where it ends up being hung, and get a picture of it framed and on the wall.
Metastasis is the u
npublicized part of this breast cancer ride. it is the part for which there are no parades, no pink ribbons, no feather boas, no emotional marches.
With the Stage IV diagnosis comes the feeling that one has been de-ribboned and stripped of the title of Survivor.
npublicized part of this breast cancer ride. it is the part for which there are no parades, no pink ribbons, no feather boas, no emotional marches.With the Stage IV diagnosis comes the feeling that one has been de-ribboned and stripped of the title of Survivor.
This is the dirty pink underbelly; the part that exists without glamour or glitter, where the only pink ball caps are the ones dropped in the gutter, stepped on and run over.
It is a dirtier shade of before, a bit soggy and cloudy, and for some of us, the new reality.
It is a cold rain on the pink parade.
At one point when I started on the umbrellas, I feared they looked like pink pumpkins, then boobs. Thank goodness they turned out umbrella-y enough.
Mostly old people there, several people I knew from the support group, several with METS also. Later in the afternoon a couple of younger people came, and it always breaks my heart to see women so young battling cancer.
It was outside, in a garden area between buildings. We had very nice weather and shade most of the day. I had some help at the end with some of the shading. The counselor who facilitates the support group took pictures of each of us with our painting when we were finished. I'm sure that's a lovely shot, after being in the breeze and working and concentrating all morning. It started at 9:00am, but I didn't make it there until about 10:00am. They had a light breakfast, and then served lunch as well (yum!) I panicked a bit midway, worrying that I wouldn't be able to finish by wrap-up time (3:00pm), but I actually finished by about 2:30pm.
I got compliments on my painting, and said to the counselor, 'yeah, they haven't read the story part yet'...haha. One of the other METS ladies understood it though. The counselor said she was glad I did it, and that it needed to be said. I agreed, and shed my only tears of the day.
It's not all rainbows and puppies and pink ribbons.
The new image I have in my mind is being piled upon by all the things I have to deal with, that keep me from focusing 100% on the last thing in the pile; having cancer and taking care of me. That might translate more universally across the cancer lines. I'll work on that idea for six months.
Monday, February 1, 2010
Crappity Crap Crap Crapness
Yeah, bad words...running through my head. But listening to my uplifting music and trying to get through this part of the day.
I did not even take a baby step today. Unless paper-clipping two important papers together can count as a baby step.
Missed church yesterday. Had my clothes all laid out, bag packed with music, scriptures, everything...then woke up and could barely move without pain. Even the knuckles in my toes hurt! Could barely move my fingers, knuckles hurt so badly! Arms and shoulders too. Didn't know to what to chalk it up until I heard on FB from a friend that she couldn't get up either and said it was her fibromyalgia. So...something in the weather, must have been my fibro. Stayed in bed nearly all day, missed church, showered later (new thing; standing in the shower and crying), went back to bed, got dressed only because Mom was expecting us for dinner. Had to take the walker! Got some ibuprofen on the way (of which I was out) and have been taking that.
I hated missing church, now that I'm able to get there. And choir practice! Staying on the ibuprofen, the only pain med I am on, and it helps me walk easier. More easily. You tell me, Mary. But...hearing that it was blamable on the weather, I was oddly relieved that it wasn't cancer having a growth spurt overnight!
I have been reading blogs and posts of fellow METS survivingers...surviving day by day...and people going on and on and on...cancer spreading, more chemo....still going on and on...GOOD ON THEM!! But I don't want to go through all that!! I want to go in for a scan one day and have my liver be COVERED in inoperable lesions and those effing ridiculously low numbers that I don't trust anyway having gone SKY high....couple weeks in and BAM...Alma 40:12.
Seriously, my doctor telling me that the 5-15 yrs my radiologist told me is "best case scenario" is starting to seem a bit low-balled! I'm thinking too much about it again, and stressing...because I have so much to stress about!
Sister helping me with the logistics of the fiscal solutions (ah ha, make sense out of that!), and she says "baby steps, just do something each day"...but some days I just can't do it! And I need to go faster, get this crap done!! They keep telling me if I can get through this fiscal crap, get on a level playing field, so to speak, I'll feel so much better...and then be able to try to make it through the 2 effing years waiting time on SSDI until I qualify for Medicare...meanwhile 2 years of COBRA will surely land me living in my car!
That is my fear. Living on too long, too much to deal with, and ending up living in my car.
Yes, bad attitude day, I suppose you could say.
BUT I'm making, and have made about 5 so far, bracelets with letter beads that say "surviving". This is my quest, to make that more in vogue that "survivor", which I may have discussed earlier or not. If not, I'll go on about it later. I want to make a BUNCH of these bracelets (got more letter beads on sale this week) and give them out in my support group, and my friends at church who I know to have had cancer. Tiny little bits of positivity here and there, until I get bored sometimes, and frustrated.
Posting while my Playlist is running is messing it up, and I want to listen to music. Signing out...Shelli G., SURVIVING in AZ. Surviving the Dirty Pink Underbelly. For now...and for many years to come because if it's crap, that's how my life will go.
I did not even take a baby step today. Unless paper-clipping two important papers together can count as a baby step.
Missed church yesterday. Had my clothes all laid out, bag packed with music, scriptures, everything...then woke up and could barely move without pain. Even the knuckles in my toes hurt! Could barely move my fingers, knuckles hurt so badly! Arms and shoulders too. Didn't know to what to chalk it up until I heard on FB from a friend that she couldn't get up either and said it was her fibromyalgia. So...something in the weather, must have been my fibro. Stayed in bed nearly all day, missed church, showered later (new thing; standing in the shower and crying), went back to bed, got dressed only because Mom was expecting us for dinner. Had to take the walker! Got some ibuprofen on the way (of which I was out) and have been taking that.
I hated missing church, now that I'm able to get there. And choir practice! Staying on the ibuprofen, the only pain med I am on, and it helps me walk easier. More easily. You tell me, Mary. But...hearing that it was blamable on the weather, I was oddly relieved that it wasn't cancer having a growth spurt overnight!
I have been reading blogs and posts of fellow METS survivingers...surviving day by day...and people going on and on and on...cancer spreading, more chemo....still going on and on...GOOD ON THEM!! But I don't want to go through all that!! I want to go in for a scan one day and have my liver be COVERED in inoperable lesions and those effing ridiculously low numbers that I don't trust anyway having gone SKY high....couple weeks in and BAM...Alma 40:12.
Seriously, my doctor telling me that the 5-15 yrs my radiologist told me is "best case scenario" is starting to seem a bit low-balled! I'm thinking too much about it again, and stressing...because I have so much to stress about!
Sister helping me with the logistics of the fiscal solutions (ah ha, make sense out of that!), and she says "baby steps, just do something each day"...but some days I just can't do it! And I need to go faster, get this crap done!! They keep telling me if I can get through this fiscal crap, get on a level playing field, so to speak, I'll feel so much better...and then be able to try to make it through the 2 effing years waiting time on SSDI until I qualify for Medicare...meanwhile 2 years of COBRA will surely land me living in my car!
That is my fear. Living on too long, too much to deal with, and ending up living in my car.
Yes, bad attitude day, I suppose you could say.
BUT I'm making, and have made about 5 so far, bracelets with letter beads that say "surviving". This is my quest, to make that more in vogue that "survivor", which I may have discussed earlier or not. If not, I'll go on about it later. I want to make a BUNCH of these bracelets (got more letter beads on sale this week) and give them out in my support group, and my friends at church who I know to have had cancer. Tiny little bits of positivity here and there, until I get bored sometimes, and frustrated.
Posting while my Playlist is running is messing it up, and I want to listen to music. Signing out...Shelli G., SURVIVING in AZ. Surviving the Dirty Pink Underbelly. For now...and for many years to come because if it's crap, that's how my life will go.
Thursday, November 5, 2009
Medicare? (and more whining)
I've been stressing out BAD...all I can see is that there is a 24 month waiting period for Medicare once you are on SSDI. I could be dead by then! COBRA payments will kill me if not the damn cancer. No, it will be the COBRA payments...people with more than just bone METS live on and on...good for them!
Another questions...seems like all the effort and aggressive treatment go into original breast cancer, but then when it comes to METS, even recurrences in the breast, it seems like the "wait and see" approach. I understand how liver and lungs are difficult to operate, but if I get a tumor in my breast, I'm gonna say TAKE IT OUT!!
I've decided that it's definitely the Femara that has to go. I missed a couple, and those are the nights I slept well. When I take it, I am up LATE! I wonder if changing the time I take it would help?
Feeling very overwhelmed, like I'll never get to that point when I can concentrate on my chronic debilitating illness, like the overwhelmedness will just keep popping up, and never end.
Another questions...seems like all the effort and aggressive treatment go into original breast cancer, but then when it comes to METS, even recurrences in the breast, it seems like the "wait and see" approach. I understand how liver and lungs are difficult to operate, but if I get a tumor in my breast, I'm gonna say TAKE IT OUT!!
I've decided that it's definitely the Femara that has to go. I missed a couple, and those are the nights I slept well. When I take it, I am up LATE! I wonder if changing the time I take it would help?
Feeling very overwhelmed, like I'll never get to that point when I can concentrate on my chronic debilitating illness, like the overwhelmedness will just keep popping up, and never end.
Monday, November 2, 2009
New Prescriptions;
But I think I have forgotten how to go to sleep, even when I feel tired! My family doctor added Celexa and Klonopin, kept the Zoloft, and asked if I wanted to keep Xanax just in case. I didn't think I would need it, but this afternoon I got anxiousy-panicky, so I took one. I feel tired, but tried going to bed and my head would not quiet down. Last night I was up until 4:00am because I had a bunch of caffeinated soda (stupid me), and slept VERY late. Maybe I have to ease my way back in to the two wonderful nights when I slept, the two days after I got the new meds. If this keeps up, I will have to try an alternative to Femara, which is the next option.
I still don't have all my paperwork done. Or bills to doctors taken care of. Or mortgage situation resolved. I had a thought, while praying before I didn't go to sleep, that I need to get all this done, and get all those irritating details "in order" so that the full measure of my creation can be fulfilled, if that's what the hold up is. I know; that sounds like I still want to die. But that's not what I mean. I just mean being ready. 5-15 yrs BEST scenario? I need to be ready.
I have accepted the "more years" part of this. Come to grips with the living on and on dealing with crap. I just have yet to embrace it. SO many people have health trials so much worse than mine, and face them far more cheerfully and helpfully...like my blog friends who do so much. Today I showered, even washed my hair...with shampoo, and put on clean undies...but no bra, and wore my house dress all day. I think that one of my challenges is the ADD tendencies, combined with the depression and anxiety. I'm kind of a mess most of the time.
I did dress up and attend a really fun family block party for Halloween. I'm so glad I made it. Friends are great!
A dear friend posted a quote on FB today; haven't googled to verify the attribution, but I really liked it. Made me think of being in the Cancer Support group, and finding others with METS.
"Friendship is born at that moment when one person says to another: "What! You too? I thought I was the only one." — C.S. Lewis
I still don't have all my paperwork done. Or bills to doctors taken care of. Or mortgage situation resolved. I had a thought, while praying before I didn't go to sleep, that I need to get all this done, and get all those irritating details "in order" so that the full measure of my creation can be fulfilled, if that's what the hold up is. I know; that sounds like I still want to die. But that's not what I mean. I just mean being ready. 5-15 yrs BEST scenario? I need to be ready.
I have accepted the "more years" part of this. Come to grips with the living on and on dealing with crap. I just have yet to embrace it. SO many people have health trials so much worse than mine, and face them far more cheerfully and helpfully...like my blog friends who do so much. Today I showered, even washed my hair...with shampoo, and put on clean undies...but no bra, and wore my house dress all day. I think that one of my challenges is the ADD tendencies, combined with the depression and anxiety. I'm kind of a mess most of the time.
I did dress up and attend a really fun family block party for Halloween. I'm so glad I made it. Friends are great!
A dear friend posted a quote on FB today; haven't googled to verify the attribution, but I really liked it. Made me think of being in the Cancer Support group, and finding others with METS.
"Friendship is born at that moment when one person says to another: "What! You too? I thought I was the only one." — C.S. Lewis
Friday, October 30, 2009
Procrastination...If I weren't good at, it wouldn't start with "PRO"...
I just haven't been able to get myself to sit down and do this. Maybe this weekend I'll be able to fill in the gaps.
- visit with oncologist good; got some more solid info. I officially have a "substantial amount" of cancer on my bones, but it hasn't spread in the past few months. He got a radiologist to do a comparison.
- attended the Cancer Survivor's Support Group at Banner, and they didn't throw me out for getting cancer again! Actually, there TWO other people there with METS! I felt welcome and at home. Considering joining the singing thing they have going twice a month until 12/1.
- paranoid side-bar: learned that ovaries sluff cells, so even if you have had them removed, you could still get ovarian cancer in cells left behind. Yeah, add that to the list to worry about.
- seeing the Primary Care Doc tomorrow to discuss better drugs. I have worn out my welcome, and therefore their effectiveness, with the ones I'm on.
- yep, still not sleeping. May have to change from Femara to one of the others, with their inherent side effects, if new meds don't help me sleep.
That's as much a nutshell as I've ever written, and really avoided the "feelings" part. Maybe I'm still processing. Maybe I'll try bed again!
- visit with oncologist good; got some more solid info. I officially have a "substantial amount" of cancer on my bones, but it hasn't spread in the past few months. He got a radiologist to do a comparison.
- attended the Cancer Survivor's Support Group at Banner, and they didn't throw me out for getting cancer again! Actually, there TWO other people there with METS! I felt welcome and at home. Considering joining the singing thing they have going twice a month until 12/1.
- paranoid side-bar: learned that ovaries sluff cells, so even if you have had them removed, you could still get ovarian cancer in cells left behind. Yeah, add that to the list to worry about.
- seeing the Primary Care Doc tomorrow to discuss better drugs. I have worn out my welcome, and therefore their effectiveness, with the ones I'm on.
- yep, still not sleeping. May have to change from Femara to one of the others, with their inherent side effects, if new meds don't help me sleep.
That's as much a nutshell as I've ever written, and really avoided the "feelings" part. Maybe I'm still processing. Maybe I'll try bed again!
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