It's been total of 5 days since my surgery and it's crazy to think that it hasn't been longer. Becca, Amber and then Graham's parents took care of the girls until yesterday which was a huge relief. We left for the hospital Thursday morning, I, along with all of the other cattle called surgeries corralled into the elevators to the same floor to prep for our various operations at 6am. I was too freaked out by that that we went up in our own elevator.
We waited til they called my name, then I went back to, once again, answer all of the normal questions - allergic to anything, heart problems, asthma, anesthesia affects, etc. Then I dressed into a paper gown, NOTHING underneath, and Graham was allowed to come and wait with me. Dr. Samsun, my plastic surgeon, came in to 'mark me up', you know those stereotypical shots of a surgeon marking a tummy tuck/thigh lift patient. He was very sincere, talking me through the entire operation step by step, one last time. He allowed me one last glance before he covered me up and i walked right into the OR. I kissed Graham, who returned to the waiting room and would stay there for 5-6 hours.
As I entered the OR, the staff and anesthesiologist were giving crap to my Breast Surgeon for 'being late' once again. I knew she was dressing, knew there was no reason for her to wait around for the hour of prep. So, as I literally jumped up onto the operating table, I told them to get this thing started, that I didn't need to see her before the surgery to know she was going to do it. (The next morning she came to see me and laughed at all that I told her. I don't remember a thing, even seeing her, but apparently, I told her, in front of all in the OR, how none of them appreciated her masterful work, and that she deserved to show up for her operations when she was good and ready. I guess you don't talk crap in front of a patient who adores her doctor that happens to be the chief of surgery. Again, no memory of any of this.)
I came to, somewhat around 7pm. They moved me into a shared room, I remember moving myself, with some assistance into my own bed, given my drip meds button, and Graham sitting there patiently. I tried to keep water and bread down, but threw it all up. I remember one of the doctor assistants coming in to check on me and to look at the stitches, so with my assistance we unvelcroed the backwards bra and I could barely see any stitches. By the look on Graham's face, he was more than pleased! Grant it, these are just the tissue extenders, and there is still some swelling.
He had to leave around 10pm. The nurse then said if I couldn't pee in the bed pan, that I'd have to have a straight catheder (sp?). I tried, man, did I try. But I remembered how painless the catheder was during my c-section, I decided not to stress. Thirty minutes later she came in, and in went the pee plug. No pain actually, a little pressure, but effortless urination. That night I was up and down. Pressing the pain button, dealing with a neurotic suite mate, being woken to check vitals. But all in all, I could move around. I was sore, but could move.
The plastic surgeon came at 7am (whom I was now dubbing as Doctor Picasso), and said that all looked great and the surgery went amazingly well. The chest soreness is because they actually lift the pectoral muscle and place the top part of the tissue extender underneath, then take the lower part of what would be the discarded skin/tissue and fold it in to use it as a pocket to hold the underside of the tissue extender. Then he folds over the top tissue. The scarring is like an upside down T - 1/2 moon under the breast, and small vertical where the center of the new breast will be, minus any areola and nipple (to be constructed and tattooed on later when I get the implants inserted). He said that if I could get off of the drip meds and be ok on the oral meds, I'd be able to go home, where I knew I'd get more rest.
So that was my goal. I called the nurse to add anti-nausea meds to my drips. The drip meds were causing me to vomit anything I put into my system. If I couldn't keep anything down, they wouldn't let me go home. Then I insisted on help walking to the bathroom. I knew I wouldn't be able to pee in a bedpan no matter what, so slowly but surely walked, scooted, snail trailed my way to the toilet where I peed. YAY! One down!!!! With the anti-nausea, I was able to keep down the bread and water, so I had to be adament about them removing the drip meds and giving me percocet. (The one doc was trying to convince me that vicodine & Tylenol 3 were the same as percocet, but I'm no fool. For my C-section, percocet was what allowed me to get up and walk almost miles a week afterwards.) My breast surgeon came in and confirmed the percocet, and then also prescribed valium for the muscle soreness. She then admitted that they removed more lymph nodes than what she was planning because she immediately saw the cancer presence, but that we knew it was there and were already planning for the chemo. Now, we just have a better way of analyzing the treatment process.
So by noon - I held down red pepper ravioli, vegetable medley, orange juice, hot tea, wheat bread and a chocolate twinkie. Aw yeah. So then I just needed to learn how to empty my drainage tubes. Very cyborg, and honestly the most painful part. I have 2 coming out of the my right and one coming out of my left. I have to empty them each night and keep the measurements for the doctors' office. The fluid is like that that builds up when you have a sprained ankle, or swollen limb. Because they don't want the fluid to have the possibility of causing infection, they want it to be drained out of the body.
I got home Friday afternoon. Ordered Trufa pasta - fussili pesto chicken with sundried tomatoes. Took my meds, and then passed out. Saturday, I had my best friends here to just sit with me. I do try to be a good patient, but I can wipe my own ass. I mean, I'm gonna be reasonable. And then food started to be delivered, which I never thought what a godsent that would be but thank you all. Sunday, my mom arrived, and knows me best, and knows me so well that lets me boss her around when I need to.
The girls came home yesterday afternoon. They know to be gentle with mommy. It's a little harder for Penelope than Sophia, but we'll take it one day at a time. They'll be busy with pre-school and tap/ballet class during the week, so it's jus the time at home. I was able to take a full shower tonight, thanks to my mom, buying me a shower mastectomy shirt - you've no idea the paraphenalia they have. But I've made the decision to remove the torture backwards bra that squeezes you all in, mostly to help push out all of those fluids. They were just bothering my stiches where the tubes insert into my body, and at any other time I've had stitches that started to irritate me, I've removed them myself. But this time, I think it's best to just put it all on ice and let the doc do it tomorrow.
It's really all about keeping up with the meds. Perkocet & Antibiotic every 4 hours, Valium every 6 hours, Tamoxifen once a day. And then there's the stool softener which I took immediately 3 times a day, and am proud to say that I had my first bowel movement yesterday. Boy howdy, I'd have them cut off a 3rd breast to never feel that again.
So now, it's been about 30 minutes and the meds are soaking in. I do thank all of you for your well wishes. I know this was a bit easier for me, mentally, because I always knew that I'd have a breast reduction at some point in my life, just not like this. So the actual removal of the breast wasn't as traumatic for me as I think some people thought. I'm actually looking forward to probably fitting into to my clothes better than I ever did before, and then to go bra shopping all over again. And for Graham? I mean, what man can say that he has one woman in his life, that can go through a variety of breast sizes before she chooses which one she likes.
Then again, this is the easiest part. I get the tubes out tomorrow, then the following Monday, get all of the pathology reports back about - the stage of cancer, start of chemo, type of chemo, length of chemo, and all of the next step.
in good news? I'M NEGATIVE FOR THE CANCER GENE! So all in all, this was just a total fluke, and caught early because I did a self-exam. Life is a bitch. But then again, this same life as brought me so much joy, laughter and love. I wouldn't exchange it for anything else. Just another challenge.
much love to you all.
Laurie
Monday, September 26, 2011
Wednesday, September 14, 2011
Cancer Gene Testing
Time is definitely flying, especially as my to-do list continues to grow (at least my tumors aren't! .....Not funny? K, I'll try better next time.)
So genetic testing...what is this, right? Before I begin, please know this is all from my memory & notes that I took, so don't take this as factual data from the doctor's mouth. Simply use it as information to lead you on a path of your own curiousity & discovery.
When you're asked your family medical history from a doctor, nurse, etc, do you really know it? I say this because I had always assumed who had certain diseases & illnesses in my family, or what was passed onto me. I knew there was cancer but never to the extent that I found out. To prepare for it, I had to research my medical family tree back to my grandparents' siblings - age of death, if they had cancer (if so, what age, type, treatment), cause of death.
This means my siblings, my parents' siblings & their kids, and my grandparents' siblings, and then if there's anyone else (like any of my grandparents' nieces/nephews).
Honestly, I knew some of my Mom's side, but basically little to none from my Dad's, and apparently this is very common (read further) except in the cases in which you grow up with and around your father's family. If not, it's a goose chase. So I left this to my parents. I knew they wanted to do something for me from afar, and boy was this helpful, for them too I'm sure.
Now to the meeting. Know that we all have potential cancer cells in our bodies, it just depends on what makes them mutate - heredity, environment, or plain dumb luck. This means that all cancer is genetic, but not necessarily hereditary. 80% of cancer is random, and 20% of cancer is familial. If I am positive for the cancer gene (which includes pancreatic & colon as well as breast & ovarian), it means it was passed onto me by one or both of my parents. My twins would get checked when they turn 21. And it would take my parents (or my first cousins) to get tested to determine which side of the family it came from (read further for insurance).
As Dr. Ott drew the tree, it became more & more apparent that it's both sides of my family that have the potential to carry the gene. However as it started to appear as if it came from my Dad's side, she said all of the men dying at a certain age on my maternal grandmother's side was curious to her. Meaning, that even though her 3 brothers died of various causes in their mid 70's, they could have very well have had some type of pancreatic or colon cancer (since there was a sister that had breast and one that has colon) and didn't know it or test for it. Depending on the man's age, where he's from, etc there's less & less known until recently - 20 years ago. Anything before that should only be taken with a grain of salt. And she was more impressed that I in fact had as much info on my Dad's side since men don't normally keep track of this, again until recently. So thank you Great Aunt Joann & Dad's first cousin (who reconnected with him after Katrina).
And prevention? Birth control for more than 5 years. Check. Having kids. Check. Breastfeeding. Check. (I forget the percentages of the reduced risks for these.) So what else to do but self-exam? Having a double mastectomy reduces your chance getting breast cancer by 95%. Almost check (one week to go!). Having a complete hystorectomy (complete removal of uterus & ovaries) reduces breast cancer by 50% & ovarian cancer by 96%. Not checking this one
off anytime soon.
So I find out in a couple of weeks. Results could come back in 4 different ways: positive, a false negative, true negative or uncertain. Because of my diagnosis & the high cancer rate in my family history, my insurance will cover it. If it's positive, my sisters and cousins' insurances would most likely cover their own testing (and because of my diagnosis at such an early age) should they want to know. If it comes back with a false negative or uncertain, there's a 2nd testing that could be done, but insurance most likely wouldn't cover. And honestly, I probably wouldn't do it. Most women wait until they receive the results to make the decision for a double mastectomy (or medically called bilateral mastectomy), but with my history & being so young, I didn't want to take any chances of having to go through this again in my life.
Why should people know if they have the cancer gene, I've been asked. I feel that it's better to be aware. You could always be that one to have just dumb luck, like I might be. But even Dr. Ott said they still don't know why or how it happens sometimes, even with tons of family history, and still come out negative. And should anyone be positive, maybe it's that MRI or mamogram that your insurance would then cover before you turn 50 (when it's normally first covered by insurance) that saves your life. Or that colonoscopy in your 30's that shows a tiny spot. Or even make your own choice for surgery to reduce your own chances.
But then if it's negative, I still found mine by self-exam & being aware. Dumb luck. And by reading all of these notes, I know it comes across as if I'm uber-positive. Don't get me wrong, I'm trying. Getting sized for a wig today & my hair chopped off tomorrow to be used for the wig = very freeing. But I do have waves of moments, and more now as it's getting closer. I wrote the first Note to simply be in control (go figure) of how people found out. But as I continue to write, know that it's helping me as much as you each tell me it's helping you. So, with that....much more to come.
All my love,
Laurie
So genetic testing...what is this, right? Before I begin, please know this is all from my memory & notes that I took, so don't take this as factual data from the doctor's mouth. Simply use it as information to lead you on a path of your own curiousity & discovery.
When you're asked your family medical history from a doctor, nurse, etc, do you really know it? I say this because I had always assumed who had certain diseases & illnesses in my family, or what was passed onto me. I knew there was cancer but never to the extent that I found out. To prepare for it, I had to research my medical family tree back to my grandparents' siblings - age of death, if they had cancer (if so, what age, type, treatment), cause of death.
This means my siblings, my parents' siblings & their kids, and my grandparents' siblings, and then if there's anyone else (like any of my grandparents' nieces/nephews).
Honestly, I knew some of my Mom's side, but basically little to none from my Dad's, and apparently this is very common (read further) except in the cases in which you grow up with and around your father's family. If not, it's a goose chase. So I left this to my parents. I knew they wanted to do something for me from afar, and boy was this helpful, for them too I'm sure.
Now to the meeting. Know that we all have potential cancer cells in our bodies, it just depends on what makes them mutate - heredity, environment, or plain dumb luck. This means that all cancer is genetic, but not necessarily hereditary. 80% of cancer is random, and 20% of cancer is familial. If I am positive for the cancer gene (which includes pancreatic & colon as well as breast & ovarian), it means it was passed onto me by one or both of my parents. My twins would get checked when they turn 21. And it would take my parents (or my first cousins) to get tested to determine which side of the family it came from (read further for insurance).
As Dr. Ott drew the tree, it became more & more apparent that it's both sides of my family that have the potential to carry the gene. However as it started to appear as if it came from my Dad's side, she said all of the men dying at a certain age on my maternal grandmother's side was curious to her. Meaning, that even though her 3 brothers died of various causes in their mid 70's, they could have very well have had some type of pancreatic or colon cancer (since there was a sister that had breast and one that has colon) and didn't know it or test for it. Depending on the man's age, where he's from, etc there's less & less known until recently - 20 years ago. Anything before that should only be taken with a grain of salt. And she was more impressed that I in fact had as much info on my Dad's side since men don't normally keep track of this, again until recently. So thank you Great Aunt Joann & Dad's first cousin (who reconnected with him after Katrina).
And prevention? Birth control for more than 5 years. Check. Having kids. Check. Breastfeeding. Check. (I forget the percentages of the reduced risks for these.) So what else to do but self-exam? Having a double mastectomy reduces your chance getting breast cancer by 95%. Almost check (one week to go!). Having a complete hystorectomy (complete removal of uterus & ovaries) reduces breast cancer by 50% & ovarian cancer by 96%. Not checking this one
off anytime soon.
So I find out in a couple of weeks. Results could come back in 4 different ways: positive, a false negative, true negative or uncertain. Because of my diagnosis & the high cancer rate in my family history, my insurance will cover it. If it's positive, my sisters and cousins' insurances would most likely cover their own testing (and because of my diagnosis at such an early age) should they want to know. If it comes back with a false negative or uncertain, there's a 2nd testing that could be done, but insurance most likely wouldn't cover. And honestly, I probably wouldn't do it. Most women wait until they receive the results to make the decision for a double mastectomy (or medically called bilateral mastectomy), but with my history & being so young, I didn't want to take any chances of having to go through this again in my life.
Why should people know if they have the cancer gene, I've been asked. I feel that it's better to be aware. You could always be that one to have just dumb luck, like I might be. But even Dr. Ott said they still don't know why or how it happens sometimes, even with tons of family history, and still come out negative. And should anyone be positive, maybe it's that MRI or mamogram that your insurance would then cover before you turn 50 (when it's normally first covered by insurance) that saves your life. Or that colonoscopy in your 30's that shows a tiny spot. Or even make your own choice for surgery to reduce your own chances.
But then if it's negative, I still found mine by self-exam & being aware. Dumb luck. And by reading all of these notes, I know it comes across as if I'm uber-positive. Don't get me wrong, I'm trying. Getting sized for a wig today & my hair chopped off tomorrow to be used for the wig = very freeing. But I do have waves of moments, and more now as it's getting closer. I wrote the first Note to simply be in control (go figure) of how people found out. But as I continue to write, know that it's helping me as much as you each tell me it's helping you. So, with that....much more to come.
All my love,
Laurie
Sunday, September 4, 2011
A Date is Set ....
Sorry that it seems like I've left some of you in the dark. Just needed some time to process it all.
First, the thoracic and lumbar MRI's of my spine just show stressed. DUH! But good news is no more cancer in my body than what they've already found.
Second, I met with my plastic surgeon. Dr. Samsun, whom Graham loves because he has a scar on his face. Apparently, a plastic surgeon who likes imperfection on his own body is a plus for the G-man. I like him because he was amazing in our consult. The bummer is that I won't be having the surgery I was hoping for, but the good news is that that the recovery time will be much shorter and I can start chemo much sooner. So no tummy tuck for LBK. DAMN!
Basically, Dr. Samsun told me that I didn't have enough to work with in my stomach or inner thighs to give me anywhere close to 50% of what I have now. I know, he was basically telling my that I'm on the skinny side. While he was trying to give me a compliment I wanted to punch him the face and give him another scar. But, I didn't. I continued to listen. Apparently, he's done this before, and there have been women, just like me - big breasted, cancer, mastectomy, turned off of the idea of 'implants', opting for tissue transfer, not being satisfied with what the doctors could do, and come back years later to opt for the implant. The tissue transfer surgery lasts 12 hours, minimum of 4 nights in the hospital, and at least 5 weeks to recover. Very invasive, scarring from hip to hip, and painful recovery. The implant surgery - 4 hours long, 2 nights in the hospital and 2 weeks of recovery. They'd put in tissue extenders (TEs) that are full of saline, and I'd most likely have to go in to his office twice to have them inject more saline in order for the tissue and skin to stretch to the size I want. I'd return after chemo for them to put the implant in - out patient, one day surgery, 2 days recovery.
So while I'm pissed that I can't have what I was hoping for, I'm being realistic that the implants are what I should do. I'd be able to have control over what I get, which I like (since I've never had control over these things before, and in more ways than several!, and I can heal much faster to start fighting this bitch inside of me. Dr. Samsun also tells us that he has a hybrid that he's done for larger breast women, in which he takes the excess tissue & skin that is normally discarded and uses it as a 'pocket' almost to hold in the implant and makes it feel much more normal than a regular implant, with your own tissue and skin double supporting it. He drew everything out on the table butcher paper (that crap I always hate sitting on at a drs' office). Showed us where the scarring would be, and showed us pictures of other women's surgeries - before and after - so that I could have a better idea.
I went home, discussed it with Graham, and called them the next day. I go in for my flu shot on thursday since I can't get sick at all throughout the fall, get tested for the Cancer gene on Friday. My pre-op with Dr. Samsun is on 9/13, then I'll meet with Dr. Estabrook, my breast surgeon to discuss the mastectomy and chemo treatment, then to the hospital to start blood work. The surgery is scheduled for 9/22, 7:30am.
I've been making my lists of everything that I need to do between now and then. Know that I still feel perfectly healthy. Still am biking to work, moving massive furniture as we renovated our office (LOOKS BEAUTIFUL!), grocery shopping, schlepping the food up our 3 hills. If it weren't for the cancer in my tata, I'd think I'm the healthiest I've ever been in my life.
But I thank each of you. For your kind words, for your encouraging spirits, for your rays of hope, and for the time that it's taken you to write to me in support. I know that those in NY will be helping out more than I could have ever imagined, and those far away wish that you could. It's all appreciated more than you know.
All My Love,
Laurie
PS - I did ask Dr. Samsun about the option to gain an extra 20 pounds to give him more to work with. But he said that stomach cells would stay stomach cells. Just because they got transferred to my breast, wouldn't automatically make them convert. If I lost weight, I'd lose the weight where I gained it, which would then be my boobs. WEIRD! Blasted science hasn't caught up with my dietary needs!
First, the thoracic and lumbar MRI's of my spine just show stressed. DUH! But good news is no more cancer in my body than what they've already found.
Second, I met with my plastic surgeon. Dr. Samsun, whom Graham loves because he has a scar on his face. Apparently, a plastic surgeon who likes imperfection on his own body is a plus for the G-man. I like him because he was amazing in our consult. The bummer is that I won't be having the surgery I was hoping for, but the good news is that that the recovery time will be much shorter and I can start chemo much sooner. So no tummy tuck for LBK. DAMN!
Basically, Dr. Samsun told me that I didn't have enough to work with in my stomach or inner thighs to give me anywhere close to 50% of what I have now. I know, he was basically telling my that I'm on the skinny side. While he was trying to give me a compliment I wanted to punch him the face and give him another scar. But, I didn't. I continued to listen. Apparently, he's done this before, and there have been women, just like me - big breasted, cancer, mastectomy, turned off of the idea of 'implants', opting for tissue transfer, not being satisfied with what the doctors could do, and come back years later to opt for the implant. The tissue transfer surgery lasts 12 hours, minimum of 4 nights in the hospital, and at least 5 weeks to recover. Very invasive, scarring from hip to hip, and painful recovery. The implant surgery - 4 hours long, 2 nights in the hospital and 2 weeks of recovery. They'd put in tissue extenders (TEs) that are full of saline, and I'd most likely have to go in to his office twice to have them inject more saline in order for the tissue and skin to stretch to the size I want. I'd return after chemo for them to put the implant in - out patient, one day surgery, 2 days recovery.
So while I'm pissed that I can't have what I was hoping for, I'm being realistic that the implants are what I should do. I'd be able to have control over what I get, which I like (since I've never had control over these things before, and in more ways than several!, and I can heal much faster to start fighting this bitch inside of me. Dr. Samsun also tells us that he has a hybrid that he's done for larger breast women, in which he takes the excess tissue & skin that is normally discarded and uses it as a 'pocket' almost to hold in the implant and makes it feel much more normal than a regular implant, with your own tissue and skin double supporting it. He drew everything out on the table butcher paper (that crap I always hate sitting on at a drs' office). Showed us where the scarring would be, and showed us pictures of other women's surgeries - before and after - so that I could have a better idea.
I went home, discussed it with Graham, and called them the next day. I go in for my flu shot on thursday since I can't get sick at all throughout the fall, get tested for the Cancer gene on Friday. My pre-op with Dr. Samsun is on 9/13, then I'll meet with Dr. Estabrook, my breast surgeon to discuss the mastectomy and chemo treatment, then to the hospital to start blood work. The surgery is scheduled for 9/22, 7:30am.
I've been making my lists of everything that I need to do between now and then. Know that I still feel perfectly healthy. Still am biking to work, moving massive furniture as we renovated our office (LOOKS BEAUTIFUL!), grocery shopping, schlepping the food up our 3 hills. If it weren't for the cancer in my tata, I'd think I'm the healthiest I've ever been in my life.
But I thank each of you. For your kind words, for your encouraging spirits, for your rays of hope, and for the time that it's taken you to write to me in support. I know that those in NY will be helping out more than I could have ever imagined, and those far away wish that you could. It's all appreciated more than you know.
All My Love,
Laurie
PS - I did ask Dr. Samsun about the option to gain an extra 20 pounds to give him more to work with. But he said that stomach cells would stay stomach cells. Just because they got transferred to my breast, wouldn't automatically make them convert. If I lost weight, I'd lose the weight where I gained it, which would then be my boobs. WEIRD! Blasted science hasn't caught up with my dietary needs!
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