So the last few days have been a bit rough.
I wasn't feeling great on Easter Sunday, but I was still fairly steady on the pins, given the assistance of the Ugly Cane of Doom.**
On Monday I actually felt a little better. I decided to spend the day working on some craft projects, in preparation for Shepherd's Harvest Sheep & Wool Festival - the plan being that I was going to have a space there and share it with friend Denise. Awesome, got lots done - and then in the late afternoon I stood up and just about fainted.
The left hip was - and is - in agony, folks. And will only just barely support me in a few painful hobbling steps. Getting up and down the steps from our house to the sidewalk (in order to get to the car so that I can see my doctors, get my scans and chemo, etc) has been getting increasingly challenging and exceedingly painful. At this pace, I may very well be wheelchair bound in a matter of a day or two.
And I'm in pretty nasty pain all the time. It hurts when I sit, it hurts more when I stand, it hurts even more when I try to get into bed, and it hurts when I lay down. Yesterday it was so bad getting into bed that I'm pretty sure my son and husband were watching to see if I was going to expire right there and then - I was shaking from the pain and weakness, and probably pale as a ghost. Poor Bren announced to all of Facebook (or at least his corner of it) that I was on my way out.
Today my feet and ankles are swollen up like balloons. Don't know what that means, but I suspect it ain't good.
That said, there are a number of explanations for everything that might have nothing to do with me being in imminent danger of shuffling off this mortal coil in the near future.
It is an unfortunate fact that tumors that shrink are just as dangerous to your bones as tumors that grow. IF the chemo is working and shrinking the tumors, they are leaving airy cavities with very thin and fractured bone as structural support. Lots of people with tumors in the bone have their bones fracture after successful chemo treatment (especially in the spine, since the vertebrae are small and already rather airy by nature. The tumors in question here are in my hip/pelvis and femur, but although these bones are normally more structurally sound than the vertebrae, my tumors are quite large and numerous there, and they've already been fracturing for at least a year, so they are probably quite fragile, and I am no featherweight).
So this development could be caused by good response to the chemo, rather than no response to the chemo. No way to know at this point.
I tend to be pessimistic, because it's largely been my experience that things don't work out for me medically, especially in dealing with pharmaceuticals - maximum side effects, minimal benefit. And evidently recent studies are suggesting that Estrogen positive patients, and especially Estrogen positive/HER2 negative patients (among whom I belong) often get little to no benefit from Abraxane.
But I could very well be wrong.
The swollen appendages (hands, too) and the weakness could be due to spreading cancer, or it could be a side effect from the Abraxane - both swelling and weakness are a relatively common side effect for this particular chemo drug.
So. Where does that leave us?
Well, my cancer could be galloping ahead - or it could be gradually receding. We don't know yet. I had a scan done on Friday, and I'll be seeing Dr. Bouncy to discuss the results and to plan our next step on Tuesday morning. I will report at that point.
Things do not look good mobility-wise, either way. I am going to have to make some fairly quick decisions, some major concessions and sacrifices to the cancer, and lots of organizing, in a very short period of time (perhaps a matter of days). I may have to move to my parents' house so that I can have people around to fetch and carry for me during the entire day, instead of just the 2.5 hours between 7:30 and 10pm, when the dear husband is home from work. I may have to go to a hospice or nursing home or hospital for care if the hip entirely gives way - at that point I am likely to be bed-bound and in a good deal of pain. Or things may stabilize for a while. Hard to know at this point. Hard to make plans.
By the way - my insurance is happy to pay thousands and thousands per week for chemo treatment that has no proven ability to extend life for even one day, but is unwilling to pay for nursing home care (hospice coverage is limited, and they won't allow you to treat the cancer actively while there - hospices are for 'palliative care' only), either of which is considerably cheaper per week than many of the chemo treatments, certainly cheaper than the chemo treatments I've been on so far.
I'm just saying.
**I'm convinced I would have been a great swords...person. I can pick up my shoes with my cane and put them on, I can pick up my purse with my cane, I can write in the sand with my cane, I can (gently) push The Cat's butt along with my cane, I can push fallen objects back to the owner with my cane, I can stab or threaten or whack people with my cane. I could also walk with my cane for a while, which it turns out was pretty cool, compared to NOT being able to walk with my cane. The cancer, it sucketh every day.
4/27/11
Speaking of Medication...
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.
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.
4/23/11
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.
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