Carla's (truly) crazy carcinoma chronicle...
Don protégé
Bear with me, this is a crazy story...
So, about 6 weeks ago, a routine mammogram discovered a tiny lump in my left breast. Like, as big as a pencil eraser. After biopsies, etc. finished, I was diagnosed with an Invasive Ductal Carcinoma (that's a malignant tumor for those of you not familiar with the lingo).
This tumor is hormone receptor positive, HER2 negative, and, as my surgeon said "As far as tumors go, this is the best kind to have." (Surgeons have a sense of humor too, I guess.)
The treatment for this is typically outpatient lumpectomy with radiation follow up, or in my case, hormone treatment. Pretty straightforward.
But that's not all the surgeon, and eventually the geneticist, said. Here's where things get crazy.
Because I have a rare genetic mutation called ATM, this tumor can't be treated with radiation. What's more, I have another mutation called CHEK2, which significantly increases the chances of "bilateral recurrence" (getting another tumor, basically.) The combination of these two mutations is extremely rare.
So, aside from being a rock star at my geneticists office, I also caused some controversy at the U of M tumor board (where the oncologists get together and review all current cases) where, my surgeon tells me, "they talked about your case for quite some time."
Believe it or not, I don't think I've ever been compared to Angelina Jolie. Until now, that is. Because the treatment that has been recommended to me and that I will undergo - a preemptive double mastectomy - is the same one she had.
Granted, I don't think Angelina Jolie had an existing tumor, like I do, so hers was considerably more preemptive than mine, but I like to think I'll handle mine with similar glamour and aplomb.
In all seriousness though, this has been a life-turned-upside-down moment for our family. Even the smallest of malignant tumors is not a diagnosis anyone wants to get, and this surgery is going to be a bear. The surgery itself is 16 hours long, then 4 days in the hospital, then 6 to 8 weeks convalescing at home.
What the future holds as far as treatment after that will depend on lymph node biopsy results which we won't have until after my surgery. For now, we're setting our intentions on getting through the next three months with flying colors, getting back in good health as soon as possible, and finding things to occupy me for what my doctor tells me will be two solid weeks in a recliner chair.
Speaking of that recliner chair. This is just one of a dozen or so added expenses that have landed in our laps, due to this life-changing diagnosis. And that is before we get a single medical bill.
The thing about these mutations is that both ATM and CHEK 2 are tumor suppressor genes. So, where a normal person might encounter a carcinogen or free radical (everyday things like sunshine, stress, or secondhand smoke) and their tumor suppressor genes would kick in and defend them, when I encounter these things I have fewer genes fighting them off. Because of this, my risk is much higher than average.
Right now the lifestyle changes recommended by the geneticists have raised our monthly expenses considerably. Things like organic foods, a full arsenal of supplements, water filters, air filters, trips to the nutritionist, mold testing and remediation in our basement, (and more) mean our expenses are ratcheting up significantly. Still ahead lies buying a chest freezer in which to keep two weeks worth of diet-specific frozen meals, Phil and my loss of income during the month following my surgery, and a host of other things. And of course, there's that recliner chair.
Yes, we are refinancing the house, but in the meantime, we could use a little help. We have been blessed throughout our lives with not just the best network of friends and family in the world, but a large and supportive community in which we work.
I already have numerous offers of help around the house and caretaking, and my colleagues at Theatre NOVA are truly one-in-a-million in their support and understanding. You won't see me around the theatre for a while, but they are holding space for me in the kindest and most generous way, so I will, most definitely, be back!
I've been running nonprofit theatres for nearly thirty years, and believe me, I know the meaning of the phrase "budget shortfall." Unfortunately, that is what my family has right now. Just a little bit of help from our friends will enable us to weather this storm and come out the other side with our lives, our finances, our peace of mind, and, I pray, my health, in tact.
Anything you can pitch in will be met with profound appreciation.
With much love,
Carla
(and Phil and William)
So, about 6 weeks ago, a routine mammogram discovered a tiny lump in my left breast. Like, as big as a pencil eraser. After biopsies, etc. finished, I was diagnosed with an Invasive Ductal Carcinoma (that's a malignant tumor for those of you not familiar with the lingo).
This tumor is hormone receptor positive, HER2 negative, and, as my surgeon said "As far as tumors go, this is the best kind to have." (Surgeons have a sense of humor too, I guess.)
The treatment for this is typically outpatient lumpectomy with radiation follow up, or in my case, hormone treatment. Pretty straightforward.
But that's not all the surgeon, and eventually the geneticist, said. Here's where things get crazy.
Because I have a rare genetic mutation called ATM, this tumor can't be treated with radiation. What's more, I have another mutation called CHEK2, which significantly increases the chances of "bilateral recurrence" (getting another tumor, basically.) The combination of these two mutations is extremely rare.
So, aside from being a rock star at my geneticists office, I also caused some controversy at the U of M tumor board (where the oncologists get together and review all current cases) where, my surgeon tells me, "they talked about your case for quite some time."
Believe it or not, I don't think I've ever been compared to Angelina Jolie. Until now, that is. Because the treatment that has been recommended to me and that I will undergo - a preemptive double mastectomy - is the same one she had.
Granted, I don't think Angelina Jolie had an existing tumor, like I do, so hers was considerably more preemptive than mine, but I like to think I'll handle mine with similar glamour and aplomb.
In all seriousness though, this has been a life-turned-upside-down moment for our family. Even the smallest of malignant tumors is not a diagnosis anyone wants to get, and this surgery is going to be a bear. The surgery itself is 16 hours long, then 4 days in the hospital, then 6 to 8 weeks convalescing at home.
What the future holds as far as treatment after that will depend on lymph node biopsy results which we won't have until after my surgery. For now, we're setting our intentions on getting through the next three months with flying colors, getting back in good health as soon as possible, and finding things to occupy me for what my doctor tells me will be two solid weeks in a recliner chair.
Speaking of that recliner chair. This is just one of a dozen or so added expenses that have landed in our laps, due to this life-changing diagnosis. And that is before we get a single medical bill.
The thing about these mutations is that both ATM and CHEK 2 are tumor suppressor genes. So, where a normal person might encounter a carcinogen or free radical (everyday things like sunshine, stress, or secondhand smoke) and their tumor suppressor genes would kick in and defend them, when I encounter these things I have fewer genes fighting them off. Because of this, my risk is much higher than average.
Right now the lifestyle changes recommended by the geneticists have raised our monthly expenses considerably. Things like organic foods, a full arsenal of supplements, water filters, air filters, trips to the nutritionist, mold testing and remediation in our basement, (and more) mean our expenses are ratcheting up significantly. Still ahead lies buying a chest freezer in which to keep two weeks worth of diet-specific frozen meals, Phil and my loss of income during the month following my surgery, and a host of other things. And of course, there's that recliner chair.
Yes, we are refinancing the house, but in the meantime, we could use a little help. We have been blessed throughout our lives with not just the best network of friends and family in the world, but a large and supportive community in which we work.
I already have numerous offers of help around the house and caretaking, and my colleagues at Theatre NOVA are truly one-in-a-million in their support and understanding. You won't see me around the theatre for a while, but they are holding space for me in the kindest and most generous way, so I will, most definitely, be back!
I've been running nonprofit theatres for nearly thirty years, and believe me, I know the meaning of the phrase "budget shortfall." Unfortunately, that is what my family has right now. Just a little bit of help from our friends will enable us to weather this storm and come out the other side with our lives, our finances, our peace of mind, and, I pray, my health, in tact.
Anything you can pitch in will be met with profound appreciation.
With much love,
Carla
(and Phil and William)
Organisateur
Carla Milarch
Organisateur
Ann Arbor, MI
