My current chemo regimen involves sitting in the infusion room for 4-5 hours, which is a fair chunk of time. Most of this time is taken up in simply waiting for my medication to be prepared.
The reason it takes so long is because they will not start preparing the medication until I'm actually sitting in the infusion room. And the reason they will not start preparing my medication when I get to the waiting room, or when I get my blood drawn for labs, or when I see my oncologist (I try to do these things on the same day I do my chemo infusions, so that I only waste one day per week in sitting around the oncology clinic) is because each chemo round costs thousands of dollars.
So if my labs came back saying that my blood count was too low to get my chemo, for instance, we wouldn't have wasted several thousand dollars worth of medication.
The reason I mention this is because for many under- or un-insured patients, this medication is out of reach. As are many of the chemo drugs and other potentially lifesaving treatments that their doctors might otherwise prescribe.
What can these people do?
Well, the wonderful people at Good Days have a Chronic Disease Fund which can help make up the difference between what private insurance and/or Medicare pays for and what the doctor orders. And they pay the doctors and pharmacies directly, so that most patients don't have to deal with continuous piles of paperwork.
They don't just cover breast cancer, either. They cover an entire list of devastating illnesses that not only affect people's physical lives, but also their financial lives.
It's a good place to donate money if you want it to go to help patients directly. You could quite literally help to save someone's life. That's a pretty good deal.
And it's a good place to go if you are a patient who needs help.
4/27/11
4/23/11
Instead of Bracelets...
October is months away, and that is starting to look like a long time from now. So I am going to address this issue now. Don't worry - if I can, I'll be bugging you in October, too!
Metastatic disease is the cause of over 90% of all breast cancer deaths, but accounts for less than 3% of the current studies on breast cancer treatment. More than 30% of stage I-III breast cancer patients progress to metastatic disease (the stages of cancer refer to how far the cancer has spread, with stage I meaning that the cancer is in one spot, stage IV meaning that the cancer has spread to a location away from the original tumor and surrounding lymph tissue). Many more are initially diagnosed at stage IV. Over 40,000 people die of breast cancer every year.
Organizations such as Susan G. Komen rave on a lot about breast cancer awareness and survivorship, but awareness that metastatic breast cancer is still incurable and deadly is still dismally low. At best, we are the invisible - when we are seen at all, we are seen as the monster under the bed. At a recent meeting of metastatic patients, one gal admitted that when she went to the BC support meetings at stage 1, she had deliberately avoided the metastatic gals, feeling that somehow their disease might be caused by some contagious weakness. Most metastatic patients find this behavior to be the rule, rather than the exception.
We also find that even among our families and friends, myths and misunderstandings about our disease prevail. We find ourselves explaining again and again that we are never going to be able to stop treatment, get off the chemo, be cured.
Until a cure is found. And that event is nowhere in sight.
If we are going to find a cure for breast cancer, and an effective treatment for metastatic disease, we cannot depend on the Pink organizations, or on the standard research organizations (Big Pharma, etc). We are going to have to resort to private funding of organizations that finance innovative research.
One such organization is Metavivor, which promotes understanding of metastatic disease and funds research specifically aimed at curing metastatic breast cancer. If we are going to keep your grandmother, mom, daughter or niece from dying of this disease, organizations like Metavivor are our best bet.
Skip the sassy bracelets, the pretty pink ribbons, and the clever t-shirts. Instead, let's face the monster head-on by putting our donation dollars into research, rather than marketing. Let's get ourselves to the point where awareness will truly save lives...
***********************
Metastatic disease is the cause of over 90% of all breast cancer deaths, but accounts for less than 3% of the current studies on breast cancer treatment. More than 30% of stage I-III breast cancer patients progress to metastatic disease (the stages of cancer refer to how far the cancer has spread, with stage I meaning that the cancer is in one spot, stage IV meaning that the cancer has spread to a location away from the original tumor and surrounding lymph tissue). Many more are initially diagnosed at stage IV. Over 40,000 people die of breast cancer every year.
Organizations such as Susan G. Komen rave on a lot about breast cancer awareness and survivorship, but awareness that metastatic breast cancer is still incurable and deadly is still dismally low. At best, we are the invisible - when we are seen at all, we are seen as the monster under the bed. At a recent meeting of metastatic patients, one gal admitted that when she went to the BC support meetings at stage 1, she had deliberately avoided the metastatic gals, feeling that somehow their disease might be caused by some contagious weakness. Most metastatic patients find this behavior to be the rule, rather than the exception.
We also find that even among our families and friends, myths and misunderstandings about our disease prevail. We find ourselves explaining again and again that we are never going to be able to stop treatment, get off the chemo, be cured.
Until a cure is found. And that event is nowhere in sight.
If we are going to find a cure for breast cancer, and an effective treatment for metastatic disease, we cannot depend on the Pink organizations, or on the standard research organizations (Big Pharma, etc). We are going to have to resort to private funding of organizations that finance innovative research.
One such organization is Metavivor, which promotes understanding of metastatic disease and funds research specifically aimed at curing metastatic breast cancer. If we are going to keep your grandmother, mom, daughter or niece from dying of this disease, organizations like Metavivor are our best bet.
Skip the sassy bracelets, the pretty pink ribbons, and the clever t-shirts. Instead, let's face the monster head-on by putting our donation dollars into research, rather than marketing. Let's get ourselves to the point where awareness will truly save lives...
Almost 20 Days and Evidently Counting...
I've been reminded that I am being remiss on the whole Posting To The Blog issue. It's been 19 days since the last post.
Sorry about that!
Part of the problem is that I don't have a lot to report. But for what it's worth, here it is:
This is Week 3 of the Abraxane. Some stuff is worse than the Adriamycin/Cytoxan combo - spectacular bloody noses, joint and bone pain, neuropathy ('pins & needles' in hands, feet, and back) that sort of thing. But some stuff is better - less fever, less nausea, less deep hopeless depression.
All things being equal, I prefer the Abraxane to the A/C. That depression really was not a Good Thing.
It will be several more weeks before I can find out whether it's actually doing anything to slow down the tumors. Cross your fingers for me, please, I can use all the luck I can get.
Now I have an entire week sans poisoning to look forward to, which is nice. This is called a 'chemo vacation'. Which sounds like it should be something really exciting, doesn't it?
"I get to go on a Chemo Vacation, I'm going to really Get Down And Par-tay!! Somebody pass me the IV bag and a pen, I'm going to Shotgun it!!!"
Sorry about that!
Part of the problem is that I don't have a lot to report. But for what it's worth, here it is:
This is Week 3 of the Abraxane. Some stuff is worse than the Adriamycin/Cytoxan combo - spectacular bloody noses, joint and bone pain, neuropathy ('pins & needles' in hands, feet, and back) that sort of thing. But some stuff is better - less fever, less nausea, less deep hopeless depression.
All things being equal, I prefer the Abraxane to the A/C. That depression really was not a Good Thing.
It will be several more weeks before I can find out whether it's actually doing anything to slow down the tumors. Cross your fingers for me, please, I can use all the luck I can get.
Now I have an entire week sans poisoning to look forward to, which is nice. This is called a 'chemo vacation'. Which sounds like it should be something really exciting, doesn't it?
"I get to go on a Chemo Vacation, I'm going to really Get Down And Par-tay!! Somebody pass me the IV bag and a pen, I'm going to Shotgun it!!!"
4/4/11
Scan Results
I got the scan results back. Not what we wanted to hear, I'm afraid - the mets in the spine and hips got bigger, more fracturing, the soft tissue mets are still there. Some of the tumors are slightly less aggressive looking, but most are still voracious. About the only good thing we can say is that there aren't any significant new tumors. Except for the one in the thyroid (oh, yay!)
Well, I suppose one slightly good thing (maybe?) is that some of the bone mets have become more sclerotic. Which I think means that those tumors are growing more slowly, or to be more exact, the bone there is being eaten away less easily and is trying to grow bone around the tumors as a defensive response. That said, the tumors in the spine and hips have gotten larger. So although they may have been slowed down a bit, they haven't been stopped, much less shrunk down.
We've temporarily slowed things down from a gallop to a trot, that's about it. Not a lot of benefit for what is basically the loss of 4 out of 7 weeks - to me, laying around the house too depressed and sick to even enjoy reading or watching TV is pretty much a net loss, as it's not what I'd call 'living'. I don't think I gained an extra 4 weeks of quality life 'on the other end' in exchange, so I'm not happy with the results.
It doesn't help that the whole 'maximum side effects, minimal benefit' thing is entirely typical for me. Just because this isn't a surprise doesn't mean it isn't a disappointment. A very, very scary disappointment, one that does not make me feel very hopeful for the near future, much less the long term.
It's very discouraging, I must say.
Tomorrow we talk to Dr. Bouncy about what poison I will take next. Should be fun.**
** Compared to being Drawn & Quartered, for instance. Everything's relative.
3/12/11
Home Again, Home Again...
I was lucky enough to have a bit of a break from the bone pain that coincided perfectly with the Metastatic Breast Cancer Retreat, which allowed me to have a wonderful time with all the truly lovely women I met there. I cannot thank the folks at the Breast Cancer Recovery Foundation and the staff at Sundara enough for their kindness and the care that they lavished on every detail of the retreat.
Once again, I cannot recommend BCRF's retreats highly enough, for those of you who are unlucky enough to be struggling with this nasty disease. They are a true blessing and a joy forever. If you love someone who has been struggling with their breast cancer diagnosis and/or treatment, please recommend the retreats to them.
And please send BCRF a nice donation, if you can - they depend on the kindness of donors in order to keep the cost to the retreat-goers FAR below the actual cost of the event. The BCRF folks are truly inspired by love, and are dedicated to their cause to an almost ridiculous degree; they deserve support on a grand scale that reflects the size of their hearts.
In the meantime, I have (regretfully) plunked back down from that bit of paradise and am back to reality. In my case, reality means that the bone pain is back with a vengeance (darn!), I need to get my taxes done (yuck!), and I have my third chemo treatment on Monday. Probably by myself, since the poor folks have been struck down with the Grue of Doom (which largely involves a long stretch of very nasty and seemingly intractable bronchitis, among other things).
Yeah, reality bites. I think I'll go comfort myself. I saved some chocolate from the retreat - reality may bite, but I can still bite back!!
Once again, I cannot recommend BCRF's retreats highly enough, for those of you who are unlucky enough to be struggling with this nasty disease. They are a true blessing and a joy forever. If you love someone who has been struggling with their breast cancer diagnosis and/or treatment, please recommend the retreats to them.
And please send BCRF a nice donation, if you can - they depend on the kindness of donors in order to keep the cost to the retreat-goers FAR below the actual cost of the event. The BCRF folks are truly inspired by love, and are dedicated to their cause to an almost ridiculous degree; they deserve support on a grand scale that reflects the size of their hearts.
In the meantime, I have (regretfully) plunked back down from that bit of paradise and am back to reality. In my case, reality means that the bone pain is back with a vengeance (darn!), I need to get my taxes done (yuck!), and I have my third chemo treatment on Monday. Probably by myself, since the poor folks have been struck down with the Grue of Doom (which largely involves a long stretch of very nasty and seemingly intractable bronchitis, among other things).
Yeah, reality bites. I think I'll go comfort myself. I saved some chocolate from the retreat - reality may bite, but I can still bite back!!
3/6/11
Retreat
Hopefully tomorrow I will be having my first Xgeva treatment, an acupuncture treatment, and then will be taking off for the Wisconsin Dells for most of the week.
Why the Wisconsin Dells? Because that is where Breast Cancer Recovery has their retreat for women with metastatic breast cancer. They hold these retreats at least twice a year, at the beautiful Sundara Inn & Spa, where they hold activities and talks specifically designed for the needs of stage 4 gals - and also spoil us shamelessly.
This spring we have women coming from all over the country - the retreat is so wonderful that it's worth a long bit of travel to get there. The gals who run the retreat are fabulous, the accommodations are posh, the food is wonderful, and the spa folks are exceedingly kind and attentive. If any of my dear readers qualify for this retreat and have not yet attended, I highly recommend that you sign up for the autumn retreat immediately. I guarantee that you will come home refreshed, renewed, and relaxed.
Breast Cancer Recovery also holds recovery retreats for breast cancer survivors, retreats for women who are navigating their breast cancer journey without the support of a partner or significant other, and retreats specifically geared for younger gals (40 & under) who are dealing with this disease. Descriptions of the various retreats and the opportunity to sign up can be found on the BCR website (see link above).
As you know, I could really use a bit of renewal right now. I am very, very grateful to the BCR and Sundara folks who have given me this opportunity. I only wish that you could be there with me!!
Why the Wisconsin Dells? Because that is where Breast Cancer Recovery has their retreat for women with metastatic breast cancer. They hold these retreats at least twice a year, at the beautiful Sundara Inn & Spa, where they hold activities and talks specifically designed for the needs of stage 4 gals - and also spoil us shamelessly.
This spring we have women coming from all over the country - the retreat is so wonderful that it's worth a long bit of travel to get there. The gals who run the retreat are fabulous, the accommodations are posh, the food is wonderful, and the spa folks are exceedingly kind and attentive. If any of my dear readers qualify for this retreat and have not yet attended, I highly recommend that you sign up for the autumn retreat immediately. I guarantee that you will come home refreshed, renewed, and relaxed.
Breast Cancer Recovery also holds recovery retreats for breast cancer survivors, retreats for women who are navigating their breast cancer journey without the support of a partner or significant other, and retreats specifically geared for younger gals (40 & under) who are dealing with this disease. Descriptions of the various retreats and the opportunity to sign up can be found on the BCR website (see link above).
As you know, I could really use a bit of renewal right now. I am very, very grateful to the BCR and Sundara folks who have given me this opportunity. I only wish that you could be there with me!!
3/5/11
Time Out for Husband
Although I've been having a less than stellar time of things, I can't be all about me, all the time.
So this week has mostly been about my husband.
A little while ago, he sat down with our GP and had a stern talking-to about his uncontrolled diabetes. More recently, she sat him down again and went over the improvements he's made (Yay, Scott!!) and the steps he needed to take in order to improve his health over the long haul.
In the process, they went over his family history, and what that and his diabetes meant in terms of risk factors. She recommended that he have a cardiac stress test done, to get a baseline for his heart.
Scott had no symptoms, and he's been exercising regularly for the last couple years, so he was pretty sure that he did fine with the test - and seriously shocked when the test results concluded that his blood flow was down by at least 10%, showing that there was probably at least one blockage.
On Tuesday we saw our new and wonderful cardiologist, who told us that we should waste no time in getting an angiogram, which would tell us exactly where any blockages might be, and how bad they were. We scheduled the angiogram for Thursday.
An angiogram is a surgical procedure in which a wired tube is threaded through your veins and into your heart, where dye is then injected through the arteries and a camera can take pictures that show any places in the arteries where blood might be flowing less than freely. If there are blockages, the surgeon can push back the soft plaque with a balloon (angioplasty) and, if necessary, place a little expandable mesh tube (stent) in the artery to hold the plaque back and keep it from re-collecting itself in the same spot.
In Scott's case, he had one large blockage, which was backing up into an area where several arteries branched off. If he had waited a while before taking that test, if all those arteries had been blocked off, things could have been much, much worse. As it is, we really felt that we dodged a big ol' bullet!! They pushed down the plaque as much as possible, placed a stent in the area, and we could see on the 'before' and 'after' photos how well they had opened that artery up. Lovely!
Usually the wire is threaded from the groin up and into the heart; my husband was prepped for that type of surgery, but at the last minute his surgeon had to take an emergency case and Scott ended up with a hotshot new surgeon who threaded the wire through his wrist and arm instead. It was amazing - within an hour of surgery, he was walking down the hall and eating his dinner. And today, Scott says he feels just fine, barely even an ache in the spot on his wrist where they inserted that wire.
Modern medicine may not have much to say when it comes to treating advanced breast cancer, but it certainly has much to be proud of when it comes to treating the heart.
In this case, they treated both Scott's heart and mine. It does my heart good to know that he will be around for a good long time, loving and caring for our son and our extended family**.
** Speaking of which, I cannot thank my mom enough for her support and help in this, as in all else. I couldn't do it without you, mom - you are my hero!!
So this week has mostly been about my husband.
A little while ago, he sat down with our GP and had a stern talking-to about his uncontrolled diabetes. More recently, she sat him down again and went over the improvements he's made (Yay, Scott!!) and the steps he needed to take in order to improve his health over the long haul.
In the process, they went over his family history, and what that and his diabetes meant in terms of risk factors. She recommended that he have a cardiac stress test done, to get a baseline for his heart.
Scott had no symptoms, and he's been exercising regularly for the last couple years, so he was pretty sure that he did fine with the test - and seriously shocked when the test results concluded that his blood flow was down by at least 10%, showing that there was probably at least one blockage.
On Tuesday we saw our new and wonderful cardiologist, who told us that we should waste no time in getting an angiogram, which would tell us exactly where any blockages might be, and how bad they were. We scheduled the angiogram for Thursday.
An angiogram is a surgical procedure in which a wired tube is threaded through your veins and into your heart, where dye is then injected through the arteries and a camera can take pictures that show any places in the arteries where blood might be flowing less than freely. If there are blockages, the surgeon can push back the soft plaque with a balloon (angioplasty) and, if necessary, place a little expandable mesh tube (stent) in the artery to hold the plaque back and keep it from re-collecting itself in the same spot.
In Scott's case, he had one large blockage, which was backing up into an area where several arteries branched off. If he had waited a while before taking that test, if all those arteries had been blocked off, things could have been much, much worse. As it is, we really felt that we dodged a big ol' bullet!! They pushed down the plaque as much as possible, placed a stent in the area, and we could see on the 'before' and 'after' photos how well they had opened that artery up. Lovely!
Usually the wire is threaded from the groin up and into the heart; my husband was prepped for that type of surgery, but at the last minute his surgeon had to take an emergency case and Scott ended up with a hotshot new surgeon who threaded the wire through his wrist and arm instead. It was amazing - within an hour of surgery, he was walking down the hall and eating his dinner. And today, Scott says he feels just fine, barely even an ache in the spot on his wrist where they inserted that wire.
Modern medicine may not have much to say when it comes to treating advanced breast cancer, but it certainly has much to be proud of when it comes to treating the heart.
In this case, they treated both Scott's heart and mine. It does my heart good to know that he will be around for a good long time, loving and caring for our son and our extended family**.
** Speaking of which, I cannot thank my mom enough for her support and help in this, as in all else. I couldn't do it without you, mom - you are my hero!!
3/3/11
2/27/11
Chemo Sucks
During my pre-chemo checkup this past week, Dr. Bouncy chirped on about how the last round of chemo was probably bad because it was killing cancer cells and that was causing toxins from the cancer to poison the system, and that meant that this round of chemo would probably be better.
I should have smacked him around a bit while he was within reach.
It was not the cancer cells poisoning the system. It was the chemo drugs poisoning the system. This round is kicking my butt big time. I'm nauseous, I'm bleeding, I'm exhausted, and I'm in pain. And it's going to get worse with each round. Two more to go, before switching to something else that will make me feel crappy in a different way.
And this is better than the cancer how?
It would be one thing, I suppose, if there was some hope - however vague and unlikely - that doing this might cure me, or bring me another decade of decent quality life. Even a few years of decent quality life.
But that is not on the table. The only time I will be off chemo from here on in is when I decide I can't take it any more, that death would be preferable. Or when chemo doesn't work at all, and death becomes inevitable. Or when the chemo itself kills me.
Whichever comes first.
Sometimes a good attitude is just impossible to muster. Sometimes I can't remember why I should even bother trying to muster it.
I'll try to muster it tomorrow. But for today, I just can't.
I should have smacked him around a bit while he was within reach.
It was not the cancer cells poisoning the system. It was the chemo drugs poisoning the system. This round is kicking my butt big time. I'm nauseous, I'm bleeding, I'm exhausted, and I'm in pain. And it's going to get worse with each round. Two more to go, before switching to something else that will make me feel crappy in a different way.
And this is better than the cancer how?
It would be one thing, I suppose, if there was some hope - however vague and unlikely - that doing this might cure me, or bring me another decade of decent quality life. Even a few years of decent quality life.
But that is not on the table. The only time I will be off chemo from here on in is when I decide I can't take it any more, that death would be preferable. Or when chemo doesn't work at all, and death becomes inevitable. Or when the chemo itself kills me.
Whichever comes first.
Sometimes a good attitude is just impossible to muster. Sometimes I can't remember why I should even bother trying to muster it.
I'll try to muster it tomorrow. But for today, I just can't.
2/25/11
Hat Boxes Needed
My hair started coming off my head this morning, just in time for my second round of chemo**.
This was in keeping with my day, which started with me not being able to find my numbing cream, so that they had to poke the large port needle into my swollen, bruised flesh without any nice, comforting anesthetic.
Dang.
I'll report more on all things port at a later date.
They slowed the Cytoxan drip this time, and so although I still got sinus pressure during the IV, it was not as intense as last time.
So far, I have developed a nasty headache (sinus and otherwise), and I'm much more nauseous already than I was last time, which is not happy making. And I have a sore throat for some reason (inside, as opposed to the port pain, see above), and the jaw is hurting again. On the other hand, so far my temps are normal, so that's a good thing. We'll see what tomorrow brings on the side effects front.
But the day ended nicely. Mom and I went to lunch, and then went to a wig and hat store and bought one soft knit nightcap sort of thing, to hold my hair from spreading itself all over my pillow and bed tonight, and then also got two really cute hats. I mean, really fun, silly, fancy, cute hats.
These will be added to the darling beret that my brilliant friend Timary made for me. It's a new design of hers, so I hadn't seen it before. You can find her patterns (including the slouchy beanie beret) at her Etsy store right here.
Thing is, when I got the hat she sent, I thought, "Ooo, FUN!!" And then I thought, "Ooo, the colors are so ME!!" And then I thought, "Ooo, this yarn is so soft and pretty!!" And then I thought, "Hey, this yarn looks sort of familiar, actually..." And then I realized... Timary bought my yarn a while back, and put a lot of work into making something out of it, AND THEN SENT IT BACK TO ME. It was my yarn!!
So now I am going to send her more. Some of it will be for her... and some of it will be for the really cute 20's Flapper Hat. Because I don't crochet, and am not up to learning how at the moment, but she has designed one darling hat, I must say!!
So now I have these really cute hats, and no place to store them properly (the only hat I've got stored/displayed currently is my floppy old straw hat, which is sitting on the head of my son's wooden rocking horse. It's very fetching, but not very protected). So if anybody just happens to have a nice big hatbox sitting around, and wants to donate it to a needy cause, I'm it.
** I forgot to post this last night, and this morning half my head came off. I think my toilet is going to start horking up hairballs, in a weird sort of harmonic convergence with The Cat...
** I forgot to post this last night, and this morning half my head came off. I think my toilet is going to start horking up hairballs, in a weird sort of harmonic convergence with The Cat...
Subscribe to:
Posts (Atom)