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.
2/27/11
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...
2/21/11
They Don't Tell You This Part
They told me that I would probably start losing my hair, probably in big clumps, somewhere between 2 and 4 weeks after my first chemo treatment.
I am slightly ahead of schedule, since I started losing my hair last night, 3 days short of two weeks.
BUT I'M NOT LOSING IT FROM MY HEAD YET...
(nobody mentioned this particular possibility, I wonder why?)
:D
I am slightly ahead of schedule, since I started losing my hair last night, 3 days short of two weeks.
BUT I'M NOT LOSING IT FROM MY HEAD YET...
(nobody mentioned this particular possibility, I wonder why?)
:D
2/18/11
Chemo: After The First Treatment
The Adriamycin/Cytoxan chemo cocktail kills off your blood cells. White, red, platelets, everything.
This leaves you at risk for several nasty side effects, one of the most concerning being a vulnerability to various types of infection. Without your white blood cells, an otherwise minor infection can become deadly.
So 24 hours after the chemo treatment, I had to go back to the infusion center to get another IV - in this case, a bag of saline (to make sure I was getting well hydrated) - and an injection of Neulasta. Neulasta forces your bone marrow to make white blood cells at a rapid rate. Unfortunately, it can't make the white blood cells travel out of the marrow at a greatly increased rate, so the packed-up cells do tend to cause bone pain in the most productive areas - the hips, the spine, the thigh bones, the breastbone and/or collarbone.
So, more side effects added to the ones from the chemo and the ones from the anti-emetics and the ones from the pain medications.
Hooray.
For the first 5-6 days, I had a fever, headaches, nausea, joint and bone pain, fatigue (sometimes sleepiness, sometimes weakness), shortness of breath, constipation and diarrhea (swinging back and forth, what fun!), intestinal bleeding, cough, a weird taste/feeling in my mouth, sinus pain, ringing/hissing in my ears (I am told this can be a sign of liver toxicity), poor quality sleep.
Hydration is essential - without it, mouth sores and more severe side effects are expected. I am told to drink at least two litres of water per day. I am a dehydrated creature by habit and preference, so drinking this much is a real challenge, and sometimes it's a very uncomfortable one. But I do it, because I suspect that I'd find the results of not doing so even less appealing.
I am also instructed to swish/gargle with saltwater and/or baking soda several times a day, and to avoid acidic things like tomatoes and dehydrating things like caffeine. Also no herbal things for several days, and no anti-oxidant supplements during the course of chemo (there is some controversy over this last item - the general advice is to follow your oncologist's directions).
The last couple days have been a bit better as far as side effects. The fever has dissipated, the nausea and headaches have lowered to a dull sort of background noise, and some of the bone pain has abated somewhat. Other side effects are still there to one degree or another. I am told that on or about Day 10 there can be a sort of Second Wave, when the blood cells are at their low point.
In the meantime, I am grateful for small mercies. Especially since we have another member of the family in health crisis mode, which has kept my mom hopping - and me to a lesser extent.
On Monday morning I will have the surgery to put in the port and catheter. On Thursday I am scheduled for my second round of chemo. I am told the side effects are accumulative in both range and intensity with each round. Can't say I'm looking forward to it. But I will try to look at it as an opportunity for this Intrepid Reporter to give you the straight scoop on chemo treatment.
2/12/11
Early Days of Chemo
I'm going to report on the experience of having chemo for a while now. Those of you who have already had it probably won't be interested in what you already know, but for those who are curious or those who are about to have it, I hope this will be of some help.
The first thing is the meeting with the nurse practitioner, who goes over your likely side effects and gives some pointers on how to handle them... and how not to handle them. No herbs for a few days before and after, lots of water, eat 6 or 7 times per day, etc. Then a brief stop in the waiting room, and then into the infusion room for the chemo.
The infusion room for my oncologist is in the clinic, rather than being in a hospital setting. I've been in there already for my IV bone drug (ibandronate/Boniva), so the environment and setup is familiar now.
It is a fairly large room, broken up into four sections, with windows on one end and the open end facing the nurses' desk opposite. High on each dividing wall there is a flat screen television, so that the patients sitting along the walls can watch something relatively insipid and harmless while they are held captive by their IV lines and needles. I like to get treatments in the morning, so I always get those one of those morning television shows with the cooking tips and news of the stars and weather reports. The televisions are set to SAP, if you want to know what's going on, you have to read the subtitles.
The chairs are set along the dividing walls, 4 or so per side. Each has a tray attached to each side, and is a lounger-style chair so that you can put your feet up if you like. There is a more standard hospital-style chair next to it, in case you want a support person with you. My mom is with me, as she has been for most of my appointments. It's a comfort, and also it is helpful to have a second point of view and an advocate there when things get tough.
There is also one of those poles from which they hang IV bags, with a pump/monitor attached. The nurse sets you up with your IV; how she does this depends partially on whether you have a port or not, and what sort of drugs you are to take.
I don't have my port put in yet, and I have very difficult veins. We have called ahead to make sure that the one nurse who has been able to get into my veins well is going to be there. She meets us at the door and relates that both she and Dr. Bouncy are concerned about getting these drugs in through the veins, since they are very dangerous if the needle slips out (as has happened to me before) and allows the drug into the tissue. If she cannot find a good solid straight vein, and a spot unscarred enough to get a solid fit with the needle, the treatment will have to wait until I get a port put in.
She puts warm towels on my arms, to help bring the veins up closer to the surface, and we talk a bit about her kids and the weather. She offers a choice of juices or ginger ale - the next day, when I go in for the Neulasta injection, I am offered crackers for nausea (I am gluten intolerant, so I had to refuse, but I appreciate the offer). She finds a good vein lower down in my arm, gets the needle and line in well, flushes my veins with a bit of saline solution, and starts with the Adriamycin.
Adriamycin is a 'push' - it is attached to the line down near the arm, and pushed in by the nurse through two syringes (to put it all in one syringe would make it too large and unwieldy for the nurse to handle, and since the process is delicate, you want your nurse to feel very much in control). She checks occasionally to make sure that we are getting blood in the line when she pulls back on the syringe a bit - a sign that the needle is still in the vein. I have trouble detecting this, as the Adriamycin is a bright red, but she tells me that she has developed 'an eye' for it.
After we are done with the Adriamycin - about ten minutes or so - we move on to the Cytoxan. This is a regular IV drip, a colorless liquid in a large bag. After a while, I start feeling pressure in my eyes and face - and find out from the nurse that Cytoxan can cause sinus pain for some people. She slows the drip down in an attempt to mitigate this effect somewhat, but at this point it's a bit too late. We continue with the drip and then give me an extra bag of saline - hydration is important, and I tend towards dehydration, so they want to give me a good start. This is especially important because the Cytoxan can be very irritating to the bladder, so they want you to pass it through as quickly as possible.
We arrived in the IV center around 8am, we are done with the IV at 11:15. It will be slower next time, because over the next days I continue to have sinus problems from the Cytoxan. On the way out, I use the bathroom and find that the Adriamycin has caused me to paint a beautiful sunset sort of tableau in the bowl... bright red in, bright red out.
Mom and I go to lunch afterwards, then go to her house, where fatigue hits me and I pass out on the couch for a couple hours. I wake myself up a few times snoring - the sinuses continue to be a problem days later. I go home, have a bit of dinner (chicken with rice), watch a movie/dvd with Scott. I go to bed early, headachy and a bit more nauseous; I do seem to get more nauseous in the evening.
So that is the first day. I'll report on the rest later - for the moment, I'm tired and nauseous and headachy and a bit feverish, so I'd better go stuff myself with meds.
Wheeeeee....
The first thing is the meeting with the nurse practitioner, who goes over your likely side effects and gives some pointers on how to handle them... and how not to handle them. No herbs for a few days before and after, lots of water, eat 6 or 7 times per day, etc. Then a brief stop in the waiting room, and then into the infusion room for the chemo.
The infusion room for my oncologist is in the clinic, rather than being in a hospital setting. I've been in there already for my IV bone drug (ibandronate/Boniva), so the environment and setup is familiar now.
It is a fairly large room, broken up into four sections, with windows on one end and the open end facing the nurses' desk opposite. High on each dividing wall there is a flat screen television, so that the patients sitting along the walls can watch something relatively insipid and harmless while they are held captive by their IV lines and needles. I like to get treatments in the morning, so I always get those one of those morning television shows with the cooking tips and news of the stars and weather reports. The televisions are set to SAP, if you want to know what's going on, you have to read the subtitles.
The chairs are set along the dividing walls, 4 or so per side. Each has a tray attached to each side, and is a lounger-style chair so that you can put your feet up if you like. There is a more standard hospital-style chair next to it, in case you want a support person with you. My mom is with me, as she has been for most of my appointments. It's a comfort, and also it is helpful to have a second point of view and an advocate there when things get tough.
There is also one of those poles from which they hang IV bags, with a pump/monitor attached. The nurse sets you up with your IV; how she does this depends partially on whether you have a port or not, and what sort of drugs you are to take.
I don't have my port put in yet, and I have very difficult veins. We have called ahead to make sure that the one nurse who has been able to get into my veins well is going to be there. She meets us at the door and relates that both she and Dr. Bouncy are concerned about getting these drugs in through the veins, since they are very dangerous if the needle slips out (as has happened to me before) and allows the drug into the tissue. If she cannot find a good solid straight vein, and a spot unscarred enough to get a solid fit with the needle, the treatment will have to wait until I get a port put in.
She puts warm towels on my arms, to help bring the veins up closer to the surface, and we talk a bit about her kids and the weather. She offers a choice of juices or ginger ale - the next day, when I go in for the Neulasta injection, I am offered crackers for nausea (I am gluten intolerant, so I had to refuse, but I appreciate the offer). She finds a good vein lower down in my arm, gets the needle and line in well, flushes my veins with a bit of saline solution, and starts with the Adriamycin.
Adriamycin is a 'push' - it is attached to the line down near the arm, and pushed in by the nurse through two syringes (to put it all in one syringe would make it too large and unwieldy for the nurse to handle, and since the process is delicate, you want your nurse to feel very much in control). She checks occasionally to make sure that we are getting blood in the line when she pulls back on the syringe a bit - a sign that the needle is still in the vein. I have trouble detecting this, as the Adriamycin is a bright red, but she tells me that she has developed 'an eye' for it.
After we are done with the Adriamycin - about ten minutes or so - we move on to the Cytoxan. This is a regular IV drip, a colorless liquid in a large bag. After a while, I start feeling pressure in my eyes and face - and find out from the nurse that Cytoxan can cause sinus pain for some people. She slows the drip down in an attempt to mitigate this effect somewhat, but at this point it's a bit too late. We continue with the drip and then give me an extra bag of saline - hydration is important, and I tend towards dehydration, so they want to give me a good start. This is especially important because the Cytoxan can be very irritating to the bladder, so they want you to pass it through as quickly as possible.
We arrived in the IV center around 8am, we are done with the IV at 11:15. It will be slower next time, because over the next days I continue to have sinus problems from the Cytoxan. On the way out, I use the bathroom and find that the Adriamycin has caused me to paint a beautiful sunset sort of tableau in the bowl... bright red in, bright red out.
Mom and I go to lunch afterwards, then go to her house, where fatigue hits me and I pass out on the couch for a couple hours. I wake myself up a few times snoring - the sinuses continue to be a problem days later. I go home, have a bit of dinner (chicken with rice), watch a movie/dvd with Scott. I go to bed early, headachy and a bit more nauseous; I do seem to get more nauseous in the evening.
So that is the first day. I'll report on the rest later - for the moment, I'm tired and nauseous and headachy and a bit feverish, so I'd better go stuff myself with meds.
Wheeeeee....
2/8/11
The Hits Just Keep On Coming
Dr. Bouncy says that if the progression of cancer is not stopped, I will be wheelchair bound within a month and dead within six months. If my hips break, I'm thinking that six months is a pretty generous and unrealistic goal.
He has nothing else left to throw at it. The more likely therapies have not done very much for me, and now the cancer is racing ahead like a bullet train. So it's the nasty chemo cocktail, and a very slim chance that it will even touch the mets in the bones, which are what is torturing me and what is killing me.
So not good news.
As they say, 'Too Much To Do, Not Enough Time To Do It In.'
We can only hope. And take advantage of the time we have as much as we can.
And prepare.
He has nothing else left to throw at it. The more likely therapies have not done very much for me, and now the cancer is racing ahead like a bullet train. So it's the nasty chemo cocktail, and a very slim chance that it will even touch the mets in the bones, which are what is torturing me and what is killing me.
So not good news.
As they say, 'Too Much To Do, Not Enough Time To Do It In.'
We can only hope. And take advantage of the time we have as much as we can.
And prepare.
2/7/11
Bad News
Well, the scan results are back, and the news is very, very bad.
I was expecting bad news. My back, plus a spot on my back ribs and another on the front ribs, have been pretty painful for the past couple weeks, and my hips have started hurting again.
Now I know why. That part isn't a surprise... well, not entirely. Like I said, I was expecting bad news. I just wasn't really expecting the news to be quite THIS bad...
Over a dozen tumors, most in my bones - including spine, neck, ribs, jaw, pelvis, both femurs - many with fractures. Most are intensely active. I also have a nodule and a partially collapsed lung, possibly a pulmonary embolism, some soft tissue tumors in the neck, chest and hip/leg muscle, and 'activity' in the colon, liver, lung, and thyroid.
Unfortunately the only tumor available for potential biopsy/oncotyping is very small and not even registering very much - the only small and 'mildly active' tumor of the bunch - so I'm afraid it might not be much help for determining effective treatment.
This all in a few months, which is very discouraging. And scary.
My appointment with Dr. Bouncy is tomorrow morning. I'll report more after consulting with him.
Not a good day.
I was expecting bad news. My back, plus a spot on my back ribs and another on the front ribs, have been pretty painful for the past couple weeks, and my hips have started hurting again.
Now I know why. That part isn't a surprise... well, not entirely. Like I said, I was expecting bad news. I just wasn't really expecting the news to be quite THIS bad...
Over a dozen tumors, most in my bones - including spine, neck, ribs, jaw, pelvis, both femurs - many with fractures. Most are intensely active. I also have a nodule and a partially collapsed lung, possibly a pulmonary embolism, some soft tissue tumors in the neck, chest and hip/leg muscle, and 'activity' in the colon, liver, lung, and thyroid.
Unfortunately the only tumor available for potential biopsy/oncotyping is very small and not even registering very much - the only small and 'mildly active' tumor of the bunch - so I'm afraid it might not be much help for determining effective treatment.
This all in a few months, which is very discouraging. And scary.
My appointment with Dr. Bouncy is tomorrow morning. I'll report more after consulting with him.
Not a good day.
2/5/11
Two Important Breakthroughs
One of the difficult things about having stage 4 breast cancer is that most of the money being spent on breast cancer research - especially the really ground-breaking research - is in prevention and detection, rather than on what to do with cancer that has spread. This is very discouraging for patients whose cancer has recurred or spread, because once it metastasizes, breast cancer is both extremely deadly and extremely painful. To be told that you have metastatic breast cancer is the experience of not only hearing your own death sentence, but also finding out that you are going to be tortured first.
One of the reasons metastatic breast cancer is so painful, is that sooner or later the majority of us get tumors that ravage our bones. To make it worse, the cancer in our bones is generally more resistant to chemo and hormonal treatments than the cancer in the soft tissue. Once in your bones - especially once it's in your spine - the cancer can really set up camp and then send out invaders to other parts of your body, like your brain, lungs, and liver. So the bones torture you and debilitate you, and then use other parts of your body to kill you.
Which is why it's exciting that they have now found two important ways in which breast cancer tumors - and in one case, bone metastases - change their microenvironment in order to outsmart our immune systems and cancer treatments. Knowing this could allow researchers to develop new treatments that could help to extend lives and extend functionality for those of us suffering from metastatic breast cancer.
They won't develop these treatments in time for me, but it gives me hope for my nieces and my friends' children.
And that, dear readers, is a Very Good Thing.
So here (with thanks to the lovely Donna and her excellent blog) is an article on Hsp27, which blocks immune cell activity against tumors and also helps them to grow.
And here is an article on Jagged1, which allows cancer cells to alter bone growth.
Here's to Hope.**
**Although most of my hope in this case resides in the fact that the likely treatments will be pharmaceutical, and therefore potentially profitable enough that Big Pharma and the FDA will move on these discoveries, as they have not done on so many other promising but less profitable treatment options.
One of the reasons metastatic breast cancer is so painful, is that sooner or later the majority of us get tumors that ravage our bones. To make it worse, the cancer in our bones is generally more resistant to chemo and hormonal treatments than the cancer in the soft tissue. Once in your bones - especially once it's in your spine - the cancer can really set up camp and then send out invaders to other parts of your body, like your brain, lungs, and liver. So the bones torture you and debilitate you, and then use other parts of your body to kill you.
Which is why it's exciting that they have now found two important ways in which breast cancer tumors - and in one case, bone metastases - change their microenvironment in order to outsmart our immune systems and cancer treatments. Knowing this could allow researchers to develop new treatments that could help to extend lives and extend functionality for those of us suffering from metastatic breast cancer.
They won't develop these treatments in time for me, but it gives me hope for my nieces and my friends' children.
And that, dear readers, is a Very Good Thing.
So here (with thanks to the lovely Donna and her excellent blog) is an article on Hsp27, which blocks immune cell activity against tumors and also helps them to grow.
And here is an article on Jagged1, which allows cancer cells to alter bone growth.
Here's to Hope.**
**Although most of my hope in this case resides in the fact that the likely treatments will be pharmaceutical, and therefore potentially profitable enough that Big Pharma and the FDA will move on these discoveries, as they have not done on so many other promising but less profitable treatment options.
2/4/11
Scarred. Or Do I Need That Extra 'r'?
I had my PET/CT scan this morning. I'm pretty anxious about the results - several things have taken a rather rapid downswing lately, and I'm fairly sure that Tuesday's visit with Dr. Bouncy is going to be uncomfortable for all of us.
There also was a great deal of trouble getting into my veins. I've developed a lot of scar tissue, and with the bone meds and blood tests and who-knows-what, I've got a lot of puncturing coming at me in the future. My veins have always been exceptionally tiny and rolling and collapsing and generally very difficult to get into, even at the best of times. So although I've put off the inevitable for as long as possible, I think I won't have long before it becomes necessary for me to get a port/catheter put in.
I'm not looking forward to the whole thing one single bit... but I don't think I'll have a choice, not for long.
Since I had to inherit my dad's big bones and huge feet, why couldn't I have inherited his big veins, too? It's ridiculous that a person as big and robust-looking as myself should have such tiny, fragile, fairy-like veins.
My son is going to be in a production of 'Once Upon A Mattress', which is based upon the fairy tale 'The Princess and the Pea'. In this fairy tale, my veins are the pea.... and I am the twenty mattresses and twenty featherbeds.
I guess that makes my husband the princess?
There also was a great deal of trouble getting into my veins. I've developed a lot of scar tissue, and with the bone meds and blood tests and who-knows-what, I've got a lot of puncturing coming at me in the future. My veins have always been exceptionally tiny and rolling and collapsing and generally very difficult to get into, even at the best of times. So although I've put off the inevitable for as long as possible, I think I won't have long before it becomes necessary for me to get a port/catheter put in.
I'm not looking forward to the whole thing one single bit... but I don't think I'll have a choice, not for long.
Since I had to inherit my dad's big bones and huge feet, why couldn't I have inherited his big veins, too? It's ridiculous that a person as big and robust-looking as myself should have such tiny, fragile, fairy-like veins.
My son is going to be in a production of 'Once Upon A Mattress', which is based upon the fairy tale 'The Princess and the Pea'. In this fairy tale, my veins are the pea.... and I am the twenty mattresses and twenty featherbeds.
I guess that makes my husband the princess?
Um. Maybe not...
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