I didn't have to get altaplase today, but there's still something funky going on with my port. The only position in which we could get any blood return this time was with me sitting in a chair, squeezing my boobs together with my hands, leaned all the way forward with my head basically in the nurse's lap, and it was slooooooow. It took about 30 minutes to get enough out to run my labs. There was nothing to do but laugh about it at that point.
Infusion went OK, I'm kind of bouncing off the walls now because of the decadron, but I started taking the series of drugs to help me sleep at 10 and we'll see how it goes. I'm starting to feel a little bit looped but not really sleepy (clarkly). Here's my doc approved routine for the curious -
8pm - lomotil (stops the runs, makes you sleepy), pepto bismol, regular supplements, and dinner.
10pm - zofran (stops the nausea, makes you sleepy)
11pm - .5 mg ativan (stops the nausea, makes you sleepy)
11:30pm - .5mg ativan
midnight - lomotil
1am if I'm still awake, another 1mg of ativan
6am-ish lomotil and decadron, ativan if I have any nausea.
Chances are, I'll be wide awake and ready for more steroids between 5 and 6am.
Met my new oncologist today - she dropped in to see me while I was getting my infusion. She's actually the triple negative expert at Stanford and very well known nationally. Really liked her, happy I'm staying. Since Dr. M left Arati the NP has been reassigned to work for a different oncologist, but Dr. T said she'll bring Arati in to work with her on my case for the remaining four weeks, and I'll meet with Dr. T personally again at least two more times before the end of the study.
She wants me to call Dr. C (the surgeon at Alta Bates who will do the mastectomy part) and start getting referrals to plastic surgeons this week, and get the mastectomy/oophorectomy/reconstruction scheduled for early November. Depending on what reconstruction route I choose there could be one or multiple surgeries there. Lots of decisions to make - silicone? My own tissue? Silicone/spacers is in many ways the easiest - it's the standard. I can choose a size (I'll probably downsize a cup), but from conversations with other people (including my sister) who have gone that route, it actually drastically changes the musculature in your chest to have the spacers in there. Like possibly to the point where I couldn't do pilates anymore. That would SUCK. I miss it so much I don't have the words to explain it.
Harvesting my own tissue is a much bigger surgery - essentially I'd have to have lipo in multiple places along with the regular tissue removal and skin grafts associated with bilateral mastectomy. It's much more dangerous in terms of risk of bleeding out on the table, it's probably multiple surgeries over time to do more lipo and shift fat around in my body to get it to look right over time. But I do have plenty of spare materials hanging around. I don't know what the musculature changes will be with that one.
Lots of questions. Hopefully answers I can understand in the next couple of weeks. I'm going to try to bring Cait and Bob to the consults to have more ears belonging to people who know me well and who can ask questions and take notes.
The timer is dinging for my lomotil. And I'm off to read in bed until I fall asleep or the alarm goes off, whichever comes first.
Infusion went OK, I'm kind of bouncing off the walls now because of the decadron, but I started taking the series of drugs to help me sleep at 10 and we'll see how it goes. I'm starting to feel a little bit looped but not really sleepy (clarkly). Here's my doc approved routine for the curious -
8pm - lomotil (stops the runs, makes you sleepy), pepto bismol, regular supplements, and dinner.
10pm - zofran (stops the nausea, makes you sleepy)
11pm - .5 mg ativan (stops the nausea, makes you sleepy)
11:30pm - .5mg ativan
midnight - lomotil
1am if I'm still awake, another 1mg of ativan
6am-ish lomotil and decadron, ativan if I have any nausea.
Chances are, I'll be wide awake and ready for more steroids between 5 and 6am.
Met my new oncologist today - she dropped in to see me while I was getting my infusion. She's actually the triple negative expert at Stanford and very well known nationally. Really liked her, happy I'm staying. Since Dr. M left Arati the NP has been reassigned to work for a different oncologist, but Dr. T said she'll bring Arati in to work with her on my case for the remaining four weeks, and I'll meet with Dr. T personally again at least two more times before the end of the study.
She wants me to call Dr. C (the surgeon at Alta Bates who will do the mastectomy part) and start getting referrals to plastic surgeons this week, and get the mastectomy/oophorectomy/reconstruction scheduled for early November. Depending on what reconstruction route I choose there could be one or multiple surgeries there. Lots of decisions to make - silicone? My own tissue? Silicone/spacers is in many ways the easiest - it's the standard. I can choose a size (I'll probably downsize a cup), but from conversations with other people (including my sister) who have gone that route, it actually drastically changes the musculature in your chest to have the spacers in there. Like possibly to the point where I couldn't do pilates anymore. That would SUCK. I miss it so much I don't have the words to explain it.
Harvesting my own tissue is a much bigger surgery - essentially I'd have to have lipo in multiple places along with the regular tissue removal and skin grafts associated with bilateral mastectomy. It's much more dangerous in terms of risk of bleeding out on the table, it's probably multiple surgeries over time to do more lipo and shift fat around in my body to get it to look right over time. But I do have plenty of spare materials hanging around. I don't know what the musculature changes will be with that one.
Lots of questions. Hopefully answers I can understand in the next couple of weeks. I'm going to try to bring Cait and Bob to the consults to have more ears belonging to people who know me well and who can ask questions and take notes.
The timer is dinging for my lomotil. And I'm off to read in bed until I fall asleep or the alarm goes off, whichever comes first.
Wow, that's fast. I had thought they were originally talking about the new year?
ReplyDeleteKim did her own tissue reconstruction and was thrilled with the results. I think she was perhaps even more thrilled with the obligatory tummy tuck than the actual new boob, but my point is her results looked great. She only had one boob done that way (the other was her own so got a lift to make it match the new one) so didn't need to harvest other tissue from butt or thighs, so it was only one very long very major surgery, and then later the nipple was tattoed on the new one.
They were. I'm responding so well to the taxol/lcl regimen that they want to push this up, but only if the tumor disappears entirely (as determined by MRI after I complete the study on Oct 15. Then as soon as I'm healed from surgery I'll do the AC half of chemo. If there is any tumor left on 10/15, we'll do a core biopsy to close the study, start AC immediately, and then reschedule the surgery for spring. Basically the current thinking is that as soon as the tumor is gone via neoadjuvant chemo, taking care of the most at risk tissue surgically provides the best long term outcomes - better chance of my lymph nodes staying clean and not needing radiation at all the sooner it's done.
DeleteAlso, AC is the one that's going to kill my immune system. I'd rather be post-op and healing before we do that if it makes sense for other reasons.
Can I ask a really dumb question (no cancer ever in my family, so I know next to nothing about this) - why chemo before mastectomy? Wouldn't it be better to get it out first, then zap what's left of it? Or would that be like poking a bear?
ReplyDeleteThe recommendations vary based on the type of cancer, how many tumors you have, and where it's situated.
DeleteIf my cancer was more likely to metastasize quickly, they would have recommended lumpectomy first. Generally, with my kind of cancer the best way to confirm a good long term outcome is to watch the chemo actually kill the tumor, because now we have evidence that the chemo is doing it's job. If we cut out the tumor first, we'd be guessing (this is what happened with my sister, and happened to guess right).
The other reason to do it in the middle now is that the taxol regimen I'm on now doesn't impact my immune system, so if the tumor disappears based on it, then it's a good time to have surgery. The AC sequence will destroy my immune system, making surgery more dangerous later, or at least we'll have to delay it longer to wait for my body to recover from that chemo course. Every day I have at-risk cells in my body (breasts, ovaries, fallopian tubes) there is a risk that a new tumor could start, so they really try to stack the treatments as closely together as possible and in the most tolerable sequence for me physically.
If I had more than one tumor or if my lymph nodes were involved the recommendation would likely be different. And I'd need radiation (which as of today, I do not.)
Can I ask a really dumb question (no cancer ever in my family, so I know next to nothing about this) - why chemo before mastectomy? Wouldn't it be better to get it out first, then zap what's left of it? Or would that be like poking a bear?
ReplyDelete