"They could find a cure in the next couple years, so you shouldn't give up."
Nobody's talking about 'giving up', whatever that would mean... I mean, I'm not laying down in the middle of the street and refusing to get up, and I'm not wailing and gnashing my teeth or anything (not too often, anyway). But there has been very little advancement towards a cure of metastatic cancers - including breast cancers, which are prone to being aggressive and nasty - in 60 years. So what is the likelihood that the Blue Fairy is going to come down and wave her wand and magically cure me now? About nil.
I don't want to hang my happiness or hopes or plans on a cure, because that is a fairy tale... at least, it's a fairy tale for those of us who have cancer now. Ten, thirty years down the line, maybe, but I'm not going to be here then. I've got now, so let's talk about what is important now. I've got maybe a few months of functional time, maybe more than that if I'm lucky, and then it gets ugly for a while, and then I'll be gone. So let's take advantage of what we can realistically hope I've got. I don't have time to waste on pretense.
"They could find a cure in the next couple years, so you shouldn't give up."
I don't know what to say when people say that sort of thing... because really, although their intentions might be good, they are saying that sort of thing for themselves more than for me. Maybe they need to comfort themselves, and certainly I don't want to deny them whatever comfort they can get. I don't want to make people feel worse if it's not necessary. But in the end, I think that sort of comfort ends up putting off all the things you should do when you know death is really standing near: telling each other the truth, building bridges, saying goodbye in the ways that matter most.
I can't help thinking about what it would have meant to my husband and his family if they had all faced his father's deteriorating health more directly. He could have mended ties with Scott, fully expressed his love for his other kids, built relationships with his grandchildren and left them with wonderful and sustaining memories. He could have been happy for his last few months, his last years... not more comfortable physically, perhaps, but he could have felt more loved and less lonely. They all could have felt more loved and comforted, if not less bereft, when the end came.
Stage IV cancer is called 'terminal' by the government agencies for a reason. I have a limited period of time in which to act... so if you love me, tell me now. If you're mad at me or hurt by something I've said or done, tell me now. If there's something you've always wanted to do with me, do it with me now. Tomorrow I may have to be dealing with the physical exigencies of dying, and I won't have the energy or time to deal with those other things. Don't wait in hopes that a magical cure will save you from the necessity, because it won't. Now is what we have.
And while you're at it, do the same with the other people you care about. Because you never know. Now might be better than later - and now is definitely the time to make later better, if you can.
5/27/09
5/7/09
Things They Don't (Necessarily) Tell You About Mastectomies
I like to be prepared for the Big Stuff. I don't deal well with surprises, so I am not happy when doctors optimistically hope that everything will go perfectly and decide not to tell me the possible downsides because they don't want to worry/scare me. What scares me is when something happens - as it nearly always does - and I don't know what it means. I want to know what might happen, so that I can either avoid it, deal with it, or dig in and endure it when it comes.
Mastectomies are Big Stuff. There were a few things that it would have helped me to know before they actually happened. Things that would have allowed me to prevent, mitigate, or at least deal with the aftermath of my surgery. So in case you, Dear Reader, are going to have a mastectomy at some point in your future, or if you have a loved one who might do so, here are some things that might be helpful to know:
1. If you had another major surgery shortly before this one, you may still have anesthetic in your system. Anesthetic stays in your tissues for a long time, especially if you are... um, curvacious. Which means that the new anesthetic is going to pile up on top of and interact with the old. This is not a good thing. Waking up can be harder, side effects (nausea, depression, dizziness, weakness, exhaustion, etc.) can be more extreme and may last longer post-operatively.
2. They will give you antibiotics intravenously during the surgery, and then more antibiotics in pill form afterwards, which you may be asked to take for several weeks post-operatively. This is meant to prevent infection. Be aware that these may be very strong antibiotics, which can have serious side effects. Keep your doctor updated if you have any problems that you think may be related to the antibiotics. If you start developing any infection along your incisions, or want to avoid infection by cleansing the area regularly, I highly recommend a tea tree oil antiseptic - I use one I get from my local organic grocery that also has lavender oil, and have had excellent results with it. Also remember that antibiotics kill all the flora in your intestines, which can affect your digestion and immune system in Not So Great ways - this can cause lots of problems, including yeast infections. Yuck. Take good probiotics during and after treatment with antibiotics - eating a good live-culture/multi-culture yogurt every day is a good start. For those not used to yogurt, I think Brown Cow has a very nice mild flavor.
3. If you are well endowed before the surgery, you are almost guaranteed to end up with lumps in places where you did not have lumps before. Tissue that used to be pulled forward by your breasts slides back under your arms, for one thing, and you also can end up with lumps on either side of the center of your chest. Frankly, it's like trading in your two larger breasts for a whole slew of smaller ones that crop up in very odd places (not to mention the odd swaths of skin - unfortunately I seem to have been left with a lot of this). This can be pretty shocking the first time you see and/or feel them. These lumps can be significant, both in terms of how they look and in terms of function - they can impede arm movement and can cause rashes (especially if you are also struggling with hot flashes and tending to collect moisture in certain areas).
I can't tell you how to get over this feeling of shock, or your dismay re the inconvenience/discomfort they can cause. I haven't figured it out yet. It's possible that I may never do so, since I have a particularly bad case, myself. You are on your own about that, but do know that I sympathize.
In the meantime, you may be able to minimize some of this by asking your surgeon (during the weeks before surgery) if s/he works with a plastic surgeon who can help them minimize this problem. But be prepared - because that may not be enough. It wasn't enough in my case, for instance.
4. There are camisoles that are designed specially for post-mastectomy wear. They are generally designed to be soft and to have seams on the outside rather than inside where they could irritate your incisions. Some have wide shoulder straps, which can be nice. They generally come with soft/light fiber prosthetics that you can tuck into little pockets on the chest (you won't be able to be measured for 'real prosthetics' for at least a month, quite possibly significantly longer than that). Many have pockets where you can put the little drainage bulbs that you end up with for a while after surgery.
These camisoles are really, really nice to have. Many hospitals give a couple to you before you go home from your mastectomy, but ask your surgeon whether this is the case - because if they don't, you want to get a couple before your surgery, so that you will have them to go home in and to wear for the next couple months. Your insurance may cover one or two - it's worth calling to ask. You can get them wherever you get mastectomy bras.
5. They tell you that you may have the drains in for 7-10 days. What they really mean is 'If you are lucky you may get them out in 7-10 days'. You have them in for as long as it takes for your fluid output to drop to the level where your surgeon feels you are less likely to develop seromas. More on those later. Most surgeons put this critical output level at 30cc's per side per 24 hours.
You may drop to this level in 7 days - but there is a good chance that it will take significantly longer. Whether you drop to that level or not, they will take out the drains at the 3-week mark, due to concerns about possible infection.
Learn from my mistakes here. Be aware that if there is too much suction/vacuum on those drains, your body may interpret this as a demand for more fluid. So you don't really want to 'strip' those tubes too often and/or get those bulbs squeezed as tightly closed as possible, especially after the first few days. This was an area where my taking the nurse literally and being very careful about doing 'what I'm supposed to' turned out to be a disadvantage. You want some suction, but not too much.
Moderation, as always, is a good thing.
6. Once they take the drains out, especially if it took a long time to get down to the 30cc level and/or if you haven't done so yet, it is a good idea to have compression around your chest and sides when possible. This will help minimize your risk for developing seromas.
A seroma is an area where the tissue under the skin was excised (cut out) and a pocket is left where the tissue surfaces have not yet knit together, and fluid (largely plasma, white blood cells, lipids, etc) collects in that pocket. If you think of your skin as being like the surface of a water bed, that will give you some idea of what it's like to have seromas - if loosely filled, you get that sort of tidal washing-back-and-forth effect, and if tightly filled it gets much more firm and swollen. Either way, they feel somewhere between weird and uncomfortable, and you can end up with more scar tissue if they hang around for long, so you want to avoid developing them if possible.
7. One way to maintain gentle pressure during the day is to get a really good jogging/sports bra - one that is not too stretchy, has no seams inside that might irritate your tender skin/incisions, that preferably has high sides and wide straps, and that doesn't have molded cups. You want a nice firm, even pressure all around the front and sides.
There are also compression products that you can wear at home. One recommended by my physical therapist is Swell Spots, which are stitched in such a way as to encourage fluid drainage. She recommended the one designed for use in thigh/groin treatment, but if you put the dipped part under your arm - and get two if you have a bilateral mastectomy - that works well for our purposes. You have to use your ingenuity as far as figuring out how to keep them on. Your sports bra might keep them on, for instance. I use the large elastic band they gave me for around my abdomen after my hysterectomy, which works fine... or you could sew elastic between the two in back, and then sew a velcro closure on in the front.
8. If your seromas get too full and uncomfortable, you can go to the doctor and they will aspirate the pockets of fluid with a needle. Generally they will choose a spot for the needle where your chest is numb, so that the process feels a bit weird but not painful. Unfortunately, this can work sort of like breast feeding - the more they take away from your body, the more fluid your body puts back into the area. So the needle aspiration can provide relief, but it can also make things worse in the long run. Try the compression thing (see above), it may help keep that re-accumulation down.
There is a concern about infection when they do the needle aspiration. You can't do much about the germs that the needle might introduce into those pockets, but you can try to keep the injection area from becoming an open gateway for bacteria. Be sure to protect the area from germs - another good time to use that antiseptic.
9. During surgery, they mess with your muscles (even if the surgeon doesn't cut into them, they still are traumatized by the change in weight and etc.). Depending on the size and density of your breasts, the loss of tissue can affect your center of balance and how the muscles are pulled on. You also may have lymph glands excised. That is a lot of insult to your underarm/axillary areas, and they can react in lots of uncomfortable ways, including 'cording'. Cording is when the muscles in and/or under your arms and in your chest spasm. If you've ever woken up in the middle of the night with one of those excruciating muscle pulls in your shin ('shin splints' or 'charlie horses'), you have some idea... except that 'cording' doesn't go away in a few minutes.
Sometimes your physical therapist can help massage these cords and relax them a bit, sometimes antibiotics help, sometimes hot and/or cold packs can help a bit. Mostly we're talking pain meds and time, unfortunately.
10. They also cut through a lot of nerves. For many this causes numbness, but it can also cause nerves to fire off randomly in various areas. For me it was a feeling of intense burning under my arms and a feeling as though I had been kicked in the center of my chest by a very large and enthusiastic horse. This may go away on its own, but if it doesn't, something you can do is to vigorously-but-gently rub the area with a nubby (clean) washcloth several times a day. This gives those freaked-out nerves something to focus on, I guess, and desensitizes them. This really, really helped me. Thank goodness.
That's all the stuff I can think of for now - I'm sure there's more, but I'm tired out. That's another thing to keep in mind; make sure you pay attention to your body's messages. Too much hand/arm work - lifting, pulling, etc. - means more fluid for those seromas, and less energy for healing.
I hope this all helps someone out there. I wish you all the luck in the world, my sisters, and all the best.
Time for a nap!!
Mastectomies are Big Stuff. There were a few things that it would have helped me to know before they actually happened. Things that would have allowed me to prevent, mitigate, or at least deal with the aftermath of my surgery. So in case you, Dear Reader, are going to have a mastectomy at some point in your future, or if you have a loved one who might do so, here are some things that might be helpful to know:
1. If you had another major surgery shortly before this one, you may still have anesthetic in your system. Anesthetic stays in your tissues for a long time, especially if you are... um, curvacious. Which means that the new anesthetic is going to pile up on top of and interact with the old. This is not a good thing. Waking up can be harder, side effects (nausea, depression, dizziness, weakness, exhaustion, etc.) can be more extreme and may last longer post-operatively.
2. They will give you antibiotics intravenously during the surgery, and then more antibiotics in pill form afterwards, which you may be asked to take for several weeks post-operatively. This is meant to prevent infection. Be aware that these may be very strong antibiotics, which can have serious side effects. Keep your doctor updated if you have any problems that you think may be related to the antibiotics. If you start developing any infection along your incisions, or want to avoid infection by cleansing the area regularly, I highly recommend a tea tree oil antiseptic - I use one I get from my local organic grocery that also has lavender oil, and have had excellent results with it. Also remember that antibiotics kill all the flora in your intestines, which can affect your digestion and immune system in Not So Great ways - this can cause lots of problems, including yeast infections. Yuck. Take good probiotics during and after treatment with antibiotics - eating a good live-culture/multi-culture yogurt every day is a good start. For those not used to yogurt, I think Brown Cow has a very nice mild flavor.
3. If you are well endowed before the surgery, you are almost guaranteed to end up with lumps in places where you did not have lumps before. Tissue that used to be pulled forward by your breasts slides back under your arms, for one thing, and you also can end up with lumps on either side of the center of your chest. Frankly, it's like trading in your two larger breasts for a whole slew of smaller ones that crop up in very odd places (not to mention the odd swaths of skin - unfortunately I seem to have been left with a lot of this). This can be pretty shocking the first time you see and/or feel them. These lumps can be significant, both in terms of how they look and in terms of function - they can impede arm movement and can cause rashes (especially if you are also struggling with hot flashes and tending to collect moisture in certain areas).
I can't tell you how to get over this feeling of shock, or your dismay re the inconvenience/discomfort they can cause. I haven't figured it out yet. It's possible that I may never do so, since I have a particularly bad case, myself. You are on your own about that, but do know that I sympathize.
In the meantime, you may be able to minimize some of this by asking your surgeon (during the weeks before surgery) if s/he works with a plastic surgeon who can help them minimize this problem. But be prepared - because that may not be enough. It wasn't enough in my case, for instance.
4. There are camisoles that are designed specially for post-mastectomy wear. They are generally designed to be soft and to have seams on the outside rather than inside where they could irritate your incisions. Some have wide shoulder straps, which can be nice. They generally come with soft/light fiber prosthetics that you can tuck into little pockets on the chest (you won't be able to be measured for 'real prosthetics' for at least a month, quite possibly significantly longer than that). Many have pockets where you can put the little drainage bulbs that you end up with for a while after surgery.
These camisoles are really, really nice to have. Many hospitals give a couple to you before you go home from your mastectomy, but ask your surgeon whether this is the case - because if they don't, you want to get a couple before your surgery, so that you will have them to go home in and to wear for the next couple months. Your insurance may cover one or two - it's worth calling to ask. You can get them wherever you get mastectomy bras.
5. They tell you that you may have the drains in for 7-10 days. What they really mean is 'If you are lucky you may get them out in 7-10 days'. You have them in for as long as it takes for your fluid output to drop to the level where your surgeon feels you are less likely to develop seromas. More on those later. Most surgeons put this critical output level at 30cc's per side per 24 hours.
You may drop to this level in 7 days - but there is a good chance that it will take significantly longer. Whether you drop to that level or not, they will take out the drains at the 3-week mark, due to concerns about possible infection.
Learn from my mistakes here. Be aware that if there is too much suction/vacuum on those drains, your body may interpret this as a demand for more fluid. So you don't really want to 'strip' those tubes too often and/or get those bulbs squeezed as tightly closed as possible, especially after the first few days. This was an area where my taking the nurse literally and being very careful about doing 'what I'm supposed to' turned out to be a disadvantage. You want some suction, but not too much.
Moderation, as always, is a good thing.
6. Once they take the drains out, especially if it took a long time to get down to the 30cc level and/or if you haven't done so yet, it is a good idea to have compression around your chest and sides when possible. This will help minimize your risk for developing seromas.
A seroma is an area where the tissue under the skin was excised (cut out) and a pocket is left where the tissue surfaces have not yet knit together, and fluid (largely plasma, white blood cells, lipids, etc) collects in that pocket. If you think of your skin as being like the surface of a water bed, that will give you some idea of what it's like to have seromas - if loosely filled, you get that sort of tidal washing-back-and-forth effect, and if tightly filled it gets much more firm and swollen. Either way, they feel somewhere between weird and uncomfortable, and you can end up with more scar tissue if they hang around for long, so you want to avoid developing them if possible.
7. One way to maintain gentle pressure during the day is to get a really good jogging/sports bra - one that is not too stretchy, has no seams inside that might irritate your tender skin/incisions, that preferably has high sides and wide straps, and that doesn't have molded cups. You want a nice firm, even pressure all around the front and sides.
There are also compression products that you can wear at home. One recommended by my physical therapist is Swell Spots, which are stitched in such a way as to encourage fluid drainage. She recommended the one designed for use in thigh/groin treatment, but if you put the dipped part under your arm - and get two if you have a bilateral mastectomy - that works well for our purposes. You have to use your ingenuity as far as figuring out how to keep them on. Your sports bra might keep them on, for instance. I use the large elastic band they gave me for around my abdomen after my hysterectomy, which works fine... or you could sew elastic between the two in back, and then sew a velcro closure on in the front.
8. If your seromas get too full and uncomfortable, you can go to the doctor and they will aspirate the pockets of fluid with a needle. Generally they will choose a spot for the needle where your chest is numb, so that the process feels a bit weird but not painful. Unfortunately, this can work sort of like breast feeding - the more they take away from your body, the more fluid your body puts back into the area. So the needle aspiration can provide relief, but it can also make things worse in the long run. Try the compression thing (see above), it may help keep that re-accumulation down.
There is a concern about infection when they do the needle aspiration. You can't do much about the germs that the needle might introduce into those pockets, but you can try to keep the injection area from becoming an open gateway for bacteria. Be sure to protect the area from germs - another good time to use that antiseptic.
9. During surgery, they mess with your muscles (even if the surgeon doesn't cut into them, they still are traumatized by the change in weight and etc.). Depending on the size and density of your breasts, the loss of tissue can affect your center of balance and how the muscles are pulled on. You also may have lymph glands excised. That is a lot of insult to your underarm/axillary areas, and they can react in lots of uncomfortable ways, including 'cording'. Cording is when the muscles in and/or under your arms and in your chest spasm. If you've ever woken up in the middle of the night with one of those excruciating muscle pulls in your shin ('shin splints' or 'charlie horses'), you have some idea... except that 'cording' doesn't go away in a few minutes.
Sometimes your physical therapist can help massage these cords and relax them a bit, sometimes antibiotics help, sometimes hot and/or cold packs can help a bit. Mostly we're talking pain meds and time, unfortunately.
10. They also cut through a lot of nerves. For many this causes numbness, but it can also cause nerves to fire off randomly in various areas. For me it was a feeling of intense burning under my arms and a feeling as though I had been kicked in the center of my chest by a very large and enthusiastic horse. This may go away on its own, but if it doesn't, something you can do is to vigorously-but-gently rub the area with a nubby (clean) washcloth several times a day. This gives those freaked-out nerves something to focus on, I guess, and desensitizes them. This really, really helped me. Thank goodness.
That's all the stuff I can think of for now - I'm sure there's more, but I'm tired out. That's another thing to keep in mind; make sure you pay attention to your body's messages. Too much hand/arm work - lifting, pulling, etc. - means more fluid for those seromas, and less energy for healing.
I hope this all helps someone out there. I wish you all the luck in the world, my sisters, and all the best.
Time for a nap!!
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