I was hoping not to have to write a post like this for a long, long time, but the time has come. Amanda's going to have to go through treatment again.
Amanda celebrated her 37th birthday at the start of October. Every birthday is a bonus now -- the initial diagnosis suggested she wouldn't live this long. Heck, she's half-way to her dream goal of seeing Gordon off to kindergarten. But just around the corner from the birthday cake was the quarterly CT scan and analysis.
Friends, the news wasn't good.
The small tumours the doctors have been calling "nodules" for the past year and a half are still stable on the aromatase inhibitors (hormone blockers). But there's this mass in her pelvis, roughly where her uterus used to be, that's been growing over time. Now it's grown quickly enough that the doctor thinks something needs to be done.
This mass is a mystery and has been all along. It was first spotted, gosh, more than a year ago. At first, the docs thought it was a leftover from the abscess that developed after Amanda's hysterectomy. But every radiologist seemed to have a different analysis with each quarterly scan: partially calcified? Spiculated mass? Globby scare-ball?
They still don't know, but whatever it is, it's growing while the other ones stay stable.
Now, what to do about it? That's still being figured out.
Grabbing a biopsy of the mass would be tricky. It's jammed in there between the rectum and bladder, so there's no easy access, and even if they jabbed it, they couldn't be sure they got a representative sample.
They could chemotherapy-blast it, but without knowing what they're treating, it'd be a lot of sick for an unknown outcome.
Radiation could target it, but comes with some permanent collateral damage to some pretty sensitive stuff.
It's sad that the "preferred" option is to cut her wide open again and go inside to get it. Major abdominal surgery as the "best case" is hard to swallow.
So, an appointment is booked with a local surgeon who comes with an amazing reputation, both as a people person, and as a top-notch knife-guy. I haven't met him yet, but he sounds like the personality opposite of some surgeons we've dealt with before. It seems "warm, empathetic and understanding" don't always go with "can cut you up with precision."
This sucks. It sucks, sucks, sucks. Amanda is still not back to being who she used to be, and shows no sign of ever being that person again. Whoever she is now, she's been through the shredder, stomped on, and put through the shredder again. Some people come out of a cancer treatment process with a renewed joy and boundless enthusiasm for the glory of life -- not her. Amanda's experience has turned her sad, bitter, anxious, afraid, and ... very not-Amanda. I don't know how to put it delicately: it's messed her up.
(She wants to be clear that it wasn't the cancer that did it -- it was the machine-gun succession of traumas from the way her case was handled, the misdiagnosis, the timing of it all, coupled with the childbirth, etc. etc. ... And she says she actually likes some of the changes, like feeling more free to speak her mind and not caring (as much) what people think about her.)
Now she's going back for more.
More surgery, more anesthesia, more hospital stays, more giant wounds stapled shut, more fear of infection, more unknown diagnoses, probably more chemotherapy, more time when she can't move around and lift her little boy. It's just a horror show ahead, and I think we're all so bloody exhausted by the extended and repeated trauma of the whole process so far that we're not even fully able to appreciate how shitty it's going to be.
And that's if it goes well.
Look, none of this is coming from a place of "poor me" and "oh, I have it so hard." You've never known me to wallow in misery. I'm more likely to say "my kid said something hilarious today" and try to laugh. But man, this is all adding up and getting pretty heavy. Chronic trauma. Back to the acute stuff.
So, that's the update. Sorry I haven't been blogging regularly. I imagine there'll be more eventful things to report in the months to come.
For now, to turn the mood around a little, here are some snapshots of things that are the closest to happy! Here's to better times ahead.
Amanda celebrated her 37th birthday at the start of October. Every birthday is a bonus now -- the initial diagnosis suggested she wouldn't live this long. Heck, she's half-way to her dream goal of seeing Gordon off to kindergarten. But just around the corner from the birthday cake was the quarterly CT scan and analysis.
Friends, the news wasn't good.
The small tumours the doctors have been calling "nodules" for the past year and a half are still stable on the aromatase inhibitors (hormone blockers). But there's this mass in her pelvis, roughly where her uterus used to be, that's been growing over time. Now it's grown quickly enough that the doctor thinks something needs to be done.
This mass is a mystery and has been all along. It was first spotted, gosh, more than a year ago. At first, the docs thought it was a leftover from the abscess that developed after Amanda's hysterectomy. But every radiologist seemed to have a different analysis with each quarterly scan: partially calcified? Spiculated mass? Globby scare-ball?
They still don't know, but whatever it is, it's growing while the other ones stay stable.
Now, what to do about it? That's still being figured out.
Grabbing a biopsy of the mass would be tricky. It's jammed in there between the rectum and bladder, so there's no easy access, and even if they jabbed it, they couldn't be sure they got a representative sample.
They could chemotherapy-blast it, but without knowing what they're treating, it'd be a lot of sick for an unknown outcome.
Radiation could target it, but comes with some permanent collateral damage to some pretty sensitive stuff.
It's sad that the "preferred" option is to cut her wide open again and go inside to get it. Major abdominal surgery as the "best case" is hard to swallow.
So, an appointment is booked with a local surgeon who comes with an amazing reputation, both as a people person, and as a top-notch knife-guy. I haven't met him yet, but he sounds like the personality opposite of some surgeons we've dealt with before. It seems "warm, empathetic and understanding" don't always go with "can cut you up with precision."
This sucks. It sucks, sucks, sucks. Amanda is still not back to being who she used to be, and shows no sign of ever being that person again. Whoever she is now, she's been through the shredder, stomped on, and put through the shredder again. Some people come out of a cancer treatment process with a renewed joy and boundless enthusiasm for the glory of life -- not her. Amanda's experience has turned her sad, bitter, anxious, afraid, and ... very not-Amanda. I don't know how to put it delicately: it's messed her up.
(She wants to be clear that it wasn't the cancer that did it -- it was the machine-gun succession of traumas from the way her case was handled, the misdiagnosis, the timing of it all, coupled with the childbirth, etc. etc. ... And she says she actually likes some of the changes, like feeling more free to speak her mind and not caring (as much) what people think about her.)
Now she's going back for more.
More surgery, more anesthesia, more hospital stays, more giant wounds stapled shut, more fear of infection, more unknown diagnoses, probably more chemotherapy, more time when she can't move around and lift her little boy. It's just a horror show ahead, and I think we're all so bloody exhausted by the extended and repeated trauma of the whole process so far that we're not even fully able to appreciate how shitty it's going to be.
And that's if it goes well.
Look, none of this is coming from a place of "poor me" and "oh, I have it so hard." You've never known me to wallow in misery. I'm more likely to say "my kid said something hilarious today" and try to laugh. But man, this is all adding up and getting pretty heavy. Chronic trauma. Back to the acute stuff.
So, that's the update. Sorry I haven't been blogging regularly. I imagine there'll be more eventful things to report in the months to come.
For now, to turn the mood around a little, here are some snapshots of things that are the closest to happy! Here's to better times ahead.
Out for a little walk, Gordon and daddy snap a selfie. |
G-snuggles are Amanda's favourite thing, period. |
Mowing the lawn. |
Learning about ancient audio recording techniques. |
Sending every prayer I can possibly muster for you all, Scott, and wishing I could offer more than mere words.
ReplyDeleteI'm following your blog since day one, as we've had a baby at the same time and Amanda has been posting on the same forum ... every time I open it I pray good news will be there...I'm shuttered...I really hope it will all work out for all of you! Can't even try to imagine what you are going through! Hugs!
ReplyDeleteIt does suck indeed. I am so sorry this is happening, particularly since the "other" things are still stable (which normally would be a good sign).
ReplyDeleteI can only pray whatever this is, is just something they can dig out and dispose of, without it being anything requiring further chemo or rad treatments.
All my wishes are going with you three at the moment.