I arrived at 10am, got vitals checked, meet with oncologist's assistant who at this point has too much joy in her voice, so much I'm ready to throw her out the window. She didn't even read my chart before coming in. She said I was getting one form of chemo when I had to correct her.
Then Dr. Goel came in and asked if I took my steroids. I said that I had never been given any. She looked confused and Graham, my advocate, was there to back me up. See, at least in my case, you're supposed to take a steroid pill morning & night the day before, they give you your morning dosage morning of, you take the pill night of, and the again morning & night day after. It's to relieve the major side effect of water retention from one of the chemo drugs. I looked at her & nearly flipped my shit. I said that I couldn't walk out of there without starting chemo, I had the whole day off, and that she needed to figure out a solution.
So, I took double dosage of steroids over double the amount of time (2 hours). Then took pills for anti-nausia, and pepcid (relieves the lining of the bowel system). Then chemo started. The first was the one to react with the steroid. Instead of one hour, we lengthened the time to 1hr & 45min. Any side effects, I'd feel there at the hospital. None to be had. So far so good. The second chemo drug was an injection into my IV, 100ccs (2 large viles). Took some time because my veins weren't cooperating. The third took a little over an hour.
Over all the day lasted almost 8 hours. Won't be that long next time, but was a bit tiring. I mean, I like to lay in a recliner, but I was on the verge of going batty. I had my iPad & laptop for work, but there was only so much I could do before I started to tire out. Graham brought me lunch, woohoo you can eat through chemo! Becca came by & dropped off water & ginger/lemon tea (yum!). Amber came & relieved graham when he needed to leave for class. I slept for about 2 hours (apparently she left for a Starbucks run & I had no idea).
So far, just tired. No pain or nausea. Side effects usually don't start until several days afterwards, and then the Nadir time (1/2 way through treatment) is the hardest because your white blood cells are at their lowest. The nurse practioners did say that if iI could keep up some exercise, it'd help my system bounce back faster. Can everyone say bike ride to work!
And mentally, in a bit of a funk, but i know it's understandable. Having family, friends & work get me through. So thank you all for your support. Now, going back to sleep.
Love you all.
Laurie
Thursday, October 27, 2011
Tuesday, October 25, 2011
DAY BEFORE CHEMO
Well, the next phase is nearly here.
Chemo starts tomorrow, and I think I'm as ready as I'll ever be. I mean, how do you prepare for this? I'm tired of making lists. I'm tired of planning (never thought I'd say that, right?) so I'm hoping this feeling is just another phase. I want it to just be done and over with, but I know it will be one of those things that will seem like it's forever in the moment. But when it's over it'll be as if it were just a blink of an eye. I hold on to that - this too shall pass.
So what do I do? I throw a party! A pre-chemo party, a pseudo birthday party for Graham, a last hoorah for the girls. Full of close friends & playgroup families. Kids were held in the back rooms (under supervision, of course) while the adults actually had some fun. Thank you to all who came! Kinda like my own little mardi gras. (FYI, fridge is full of beer and bar is full of wine, so when you visit, it'll be guaranteed good times.)
For today, I go to work, like any ordinary day. Get as much done as possible. It does feel a bit like 'dead woman walking'. I mean, I know I'm not gonna die, but there is a sort of 'last rights' feeling before I embark on this next, shall we call it journey? Of the unknown, really. Because who knows how I'll feel, react, look like. And yes, scared. But I do my best to stay out of that part of my head. I do breakdown at times, but I try to only let it last for a moment, afraid that if I cry for too long that it'll be harder for me to bounce back and stand up straight again.
And I can't say enough about the support and love and prayers. Throughout life you know that you've made friends along the way, but iI've never truly known the love that can exist until now. I mean, I thought I did when I met & fell in love with graham, and then when I had the girls. But this, this is different. No words can express my gratitude and appreciation, and yes, love. I know it will carry me through. So thank you.
I'm taking tomorrow off, more for my mental health than anything. And then we'll see how my body reacts. The next waiting game. Ah, wait and see. I think I will have to create a posting of all the bullshit sayings that run through my head, and sorry for my sarcasm, but I'm in a 'who gives a shit' mode right now. So yes, wait and see, this too shall pass, what doesn't kill us makes us stronger. BULLSHIT SAYINGS. How about 'suck it up'. 'better you than me' ...........ok, I'll stop before I offend anyone.
Love you all.
Chemo starts tomorrow, and I think I'm as ready as I'll ever be. I mean, how do you prepare for this? I'm tired of making lists. I'm tired of planning (never thought I'd say that, right?) so I'm hoping this feeling is just another phase. I want it to just be done and over with, but I know it will be one of those things that will seem like it's forever in the moment. But when it's over it'll be as if it were just a blink of an eye. I hold on to that - this too shall pass.
So what do I do? I throw a party! A pre-chemo party, a pseudo birthday party for Graham, a last hoorah for the girls. Full of close friends & playgroup families. Kids were held in the back rooms (under supervision, of course) while the adults actually had some fun. Thank you to all who came! Kinda like my own little mardi gras. (FYI, fridge is full of beer and bar is full of wine, so when you visit, it'll be guaranteed good times.)
For today, I go to work, like any ordinary day. Get as much done as possible. It does feel a bit like 'dead woman walking'. I mean, I know I'm not gonna die, but there is a sort of 'last rights' feeling before I embark on this next, shall we call it journey? Of the unknown, really. Because who knows how I'll feel, react, look like. And yes, scared. But I do my best to stay out of that part of my head. I do breakdown at times, but I try to only let it last for a moment, afraid that if I cry for too long that it'll be harder for me to bounce back and stand up straight again.
And I can't say enough about the support and love and prayers. Throughout life you know that you've made friends along the way, but iI've never truly known the love that can exist until now. I mean, I thought I did when I met & fell in love with graham, and then when I had the girls. But this, this is different. No words can express my gratitude and appreciation, and yes, love. I know it will carry me through. So thank you.
I'm taking tomorrow off, more for my mental health than anything. And then we'll see how my body reacts. The next waiting game. Ah, wait and see. I think I will have to create a posting of all the bullshit sayings that run through my head, and sorry for my sarcasm, but I'm in a 'who gives a shit' mode right now. So yes, wait and see, this too shall pass, what doesn't kill us makes us stronger. BULLSHIT SAYINGS. How about 'suck it up'. 'better you than me' ...........ok, I'll stop before I offend anyone.
Love you all.
Monday, October 17, 2011
Friday, October 14, 2011
Oncology & Work
Well, it's Friday.......4 days since I've met with the Medical Oncologist. It's taken so long to post because it was also the first day I went back to work!
It was the day we've been anticipating ever since this whirlwind started, finding out what this chemo, and now radiation, plan will be. Dr. Anu Goel, a beautiful young Indian woman, is revered by both my breast surgeon & plastic surgeon so I knew I'd be in good hands. After she went through my history - how I found the lump, all of the tests and results - she asked, 'So tell me what you think will happen next.' My heart skipped a beat, a knot in my throat and I stopped. My first breakdown in front of a doctor. She assured me it was ok, that she needed to understand what I thought and knew about the process. I said that I knew I needed chemo because of the cancer found in my lymph nodes, and then the radiation because of its agressiveness, and that all in all I thought it would be about 6 months. She then said something that was spoken to me for the first time by a doctor. "We're here to cure you." A weight like no other was lifted.
We went through the different types of chemo 'plans,' like it was a cruise line option - 4 day/3 night cruise or a 7 day/6 night cruise. Seriously. There's the AC-T option that's every 2 weeks for 4 months, the TAC every 3 weeks for 4 months, or the research option in which the computer randomly puts you into either the first option or TAC for 2 months then weekly for the following 2-3 months. All side effects the same - same nausea, same numbness, same hair loss, same mouth sores. The latter option in the research is believed to have lesser side effects, but it's a gamble as to whether you'd be chosen. Even though I'm a supporter of modern medicine & a believer in research, I'm being, I'll say it, a bit selfish. It's my life, my kids' lives, my husband's life, and all of my supporters' lives. I don't want anymore gambles. After talking it over with Graham, we chose the TAC option.
So, starting 10/26 (I made that the start date so that I could still make my plans to return home to Louisiana for the holidays without a chemo interruption), I'll go in every 3 weeks for 4-5 hours. Then the next day for an injection to boost my white blood cell count. This will run me to the first week of February, and then I'll start the radiation. She mentioned how there's internet so I can bring a laptop and still work while I got the IV injections. (Was something mentioned in my medical reports that I don't know about?)
Then there's the reminder to always have your advocate present. And in my case, it's Graham. He talks through concerns or questions that aways slip my mind. Nausea medicines, cold cap questions, how it will all affect me.
The cold cap, still being researched, is an actual cap that you put on your head the day before, of and after your chemo. It lowers your body temperature to about 70 degrees, and is thought to freeze your hair follicles enough so that you dont have any hair loss. Some people swear by it. But after all of my research & talking to specialists, if there's any microscopic cancer cells floating around, even in my brain, why would I want to do anything to prevent their death. Plus, I can't imagine wearing that during the coldest of New York's seasons. AND I have a sassy new wig. So no cold cap. If I'm going to do this, I'm going to do it all the way. And plus, it's my only chance to see what I'd look like bald!
As for the nausea, she asked if I had nausea during my pregnancy. Graham laughed and said, "She didn't have a normal pregnancy, even with twins." (For those of you who don't know or remember.....no nausea, no cravings, gained a total of 26 pounds, went to 37 weeks and worked until the day before. So in the end, what's a little chemo, right?) I said to her that as long as I didn't have any nausea, I'd be able to eat. But the slightest nausea, I knew I wouldn't put one bread crumb into my mouth. So, she prescribed 3 separate medications. One she said was going to be expensive, but if I have extreme nausea, it'll work. (It damn well better be worth the one time usage of over $350 after insurance! The other two costs $55 after insurance. Ugh, our health care system!)
Anything else? She said that I would be at about 70% of my energy. Graham laughed again, and said that it's still twice as much as normal people. And then she looked at him, and said that he'll have to pick up the pieces. That I'll be tired, may not be able to cook, will need to lie down a lot, will be moody and that he'll have to look after the kids. We both laughed. Besides the cooking, Graham already does everything. That's how amazing HE is! He'd normally shrug all of this off, but without my cooking he knows that that's what we'll be asking for from our local supporters. Who, from now on, I'll call the Brown Brigade. (still not a pink person) And then she mentions the sterilization. The fact that this may throw me into pre-menopause, and may not be able to conceive again. We have two beautiful girls. We always wanted one more, but if it didn't happen, there's plenty of babies that need homes. We'll deal with that when it comes.
And for work? How could I not? I'm fine physically, except for a little soreness on my right side that I just need to work out. I get a bit tired, but then I just stop and slow down. I have a desk job, it's not like I move boxes for a living (although I have been known to move a 5 drawer filing cabinet on my own). So it's been good to keep my mind busy. And plus, we need the income. It's reality. I can't just stop because of a little cancer. And as soon as the rain stops - I'm biking to work. My lower body works fine, the upper body needs the work. I'll only do it on the 2 days a week I don't pick up the girls from pre-school.
As for my new tatas, they've been healing nicely. The underlying scars itch a bit, and the intersection where the single stitches were still have some healing to do. I'll get one more 1/2 injection in order to stretch them a bit more, but in the end, a small C? I think? What do I know about anything lower than a DD! I mean the last time I think I was a C was what, 8th Grade? My right breast still has a bit fluid in it, that we've been aspirating weekly. But the doctor says that if it's not gone by Tuesday that I'll need a small catheter to take care of it before the chemo start. So, I've been pressing, squeezing, inserting gauze inside my sports bras, in order to get the skin to seal to the tissue. It's been morphing my breast a bit, but he says that it'll go back to a normal shape. Just make it so that fluid has nowhere to fill.
So if you see me walking around New York with hand pressed against my right breast, you'll know the reason.
Now for you? It's been a month since I last asked. Have you done your self-exam? Be familiar with and know your body. Don't be afraid to asks questions to your doctor, no matter how silly you think they are.
There's more on my mind, but my subway ride is coming to an end.
All my love,
Laurie
It was the day we've been anticipating ever since this whirlwind started, finding out what this chemo, and now radiation, plan will be. Dr. Anu Goel, a beautiful young Indian woman, is revered by both my breast surgeon & plastic surgeon so I knew I'd be in good hands. After she went through my history - how I found the lump, all of the tests and results - she asked, 'So tell me what you think will happen next.' My heart skipped a beat, a knot in my throat and I stopped. My first breakdown in front of a doctor. She assured me it was ok, that she needed to understand what I thought and knew about the process. I said that I knew I needed chemo because of the cancer found in my lymph nodes, and then the radiation because of its agressiveness, and that all in all I thought it would be about 6 months. She then said something that was spoken to me for the first time by a doctor. "We're here to cure you." A weight like no other was lifted.
We went through the different types of chemo 'plans,' like it was a cruise line option - 4 day/3 night cruise or a 7 day/6 night cruise. Seriously. There's the AC-T option that's every 2 weeks for 4 months, the TAC every 3 weeks for 4 months, or the research option in which the computer randomly puts you into either the first option or TAC for 2 months then weekly for the following 2-3 months. All side effects the same - same nausea, same numbness, same hair loss, same mouth sores. The latter option in the research is believed to have lesser side effects, but it's a gamble as to whether you'd be chosen. Even though I'm a supporter of modern medicine & a believer in research, I'm being, I'll say it, a bit selfish. It's my life, my kids' lives, my husband's life, and all of my supporters' lives. I don't want anymore gambles. After talking it over with Graham, we chose the TAC option.
So, starting 10/26 (I made that the start date so that I could still make my plans to return home to Louisiana for the holidays without a chemo interruption), I'll go in every 3 weeks for 4-5 hours. Then the next day for an injection to boost my white blood cell count. This will run me to the first week of February, and then I'll start the radiation. She mentioned how there's internet so I can bring a laptop and still work while I got the IV injections. (Was something mentioned in my medical reports that I don't know about?)
Then there's the reminder to always have your advocate present. And in my case, it's Graham. He talks through concerns or questions that aways slip my mind. Nausea medicines, cold cap questions, how it will all affect me.
The cold cap, still being researched, is an actual cap that you put on your head the day before, of and after your chemo. It lowers your body temperature to about 70 degrees, and is thought to freeze your hair follicles enough so that you dont have any hair loss. Some people swear by it. But after all of my research & talking to specialists, if there's any microscopic cancer cells floating around, even in my brain, why would I want to do anything to prevent their death. Plus, I can't imagine wearing that during the coldest of New York's seasons. AND I have a sassy new wig. So no cold cap. If I'm going to do this, I'm going to do it all the way. And plus, it's my only chance to see what I'd look like bald!
As for the nausea, she asked if I had nausea during my pregnancy. Graham laughed and said, "She didn't have a normal pregnancy, even with twins." (For those of you who don't know or remember.....no nausea, no cravings, gained a total of 26 pounds, went to 37 weeks and worked until the day before. So in the end, what's a little chemo, right?) I said to her that as long as I didn't have any nausea, I'd be able to eat. But the slightest nausea, I knew I wouldn't put one bread crumb into my mouth. So, she prescribed 3 separate medications. One she said was going to be expensive, but if I have extreme nausea, it'll work. (It damn well better be worth the one time usage of over $350 after insurance! The other two costs $55 after insurance. Ugh, our health care system!)
Anything else? She said that I would be at about 70% of my energy. Graham laughed again, and said that it's still twice as much as normal people. And then she looked at him, and said that he'll have to pick up the pieces. That I'll be tired, may not be able to cook, will need to lie down a lot, will be moody and that he'll have to look after the kids. We both laughed. Besides the cooking, Graham already does everything. That's how amazing HE is! He'd normally shrug all of this off, but without my cooking he knows that that's what we'll be asking for from our local supporters. Who, from now on, I'll call the Brown Brigade. (still not a pink person) And then she mentions the sterilization. The fact that this may throw me into pre-menopause, and may not be able to conceive again. We have two beautiful girls. We always wanted one more, but if it didn't happen, there's plenty of babies that need homes. We'll deal with that when it comes.
And for work? How could I not? I'm fine physically, except for a little soreness on my right side that I just need to work out. I get a bit tired, but then I just stop and slow down. I have a desk job, it's not like I move boxes for a living (although I have been known to move a 5 drawer filing cabinet on my own). So it's been good to keep my mind busy. And plus, we need the income. It's reality. I can't just stop because of a little cancer. And as soon as the rain stops - I'm biking to work. My lower body works fine, the upper body needs the work. I'll only do it on the 2 days a week I don't pick up the girls from pre-school.
As for my new tatas, they've been healing nicely. The underlying scars itch a bit, and the intersection where the single stitches were still have some healing to do. I'll get one more 1/2 injection in order to stretch them a bit more, but in the end, a small C? I think? What do I know about anything lower than a DD! I mean the last time I think I was a C was what, 8th Grade? My right breast still has a bit fluid in it, that we've been aspirating weekly. But the doctor says that if it's not gone by Tuesday that I'll need a small catheter to take care of it before the chemo start. So, I've been pressing, squeezing, inserting gauze inside my sports bras, in order to get the skin to seal to the tissue. It's been morphing my breast a bit, but he says that it'll go back to a normal shape. Just make it so that fluid has nowhere to fill.
So if you see me walking around New York with hand pressed against my right breast, you'll know the reason.
Now for you? It's been a month since I last asked. Have you done your self-exam? Be familiar with and know your body. Don't be afraid to asks questions to your doctor, no matter how silly you think they are.
There's more on my mind, but my subway ride is coming to an end.
All my love,
Laurie
Monday, October 3, 2011
Pathology Reports
Well, another week of waiting. I meet with the Oncologist next Monday to figure out the path of chemo.
But today found out the pathology reports. Turns out cancer was in all four quadrants of my right breast, not just in the upper quadrant. The grading of the tumors totaled 8 out of 9, which means it's stage 3 and very aggressive. The tumors ranged in size of .3 cm to 2.5 cm, the largest of which is what I most likely felt. And understandable as to why we (me and my gyn) didn't feel anything three months earlier. So, go ahead and measure what's 2.5 cm. Pretty tiny, right?
They removed 24 lymph nodes, 8 of which came back positive for cancer. I was on the edge of freaking, but she assured me that it was a good thing. The lymph nodes go through your entire body and only a third in that area were cancerous, so with the results of a clear PetCT scan, it's a good thing.
Also, confirmed that there was absolutely no cancer in the left breast. So even though it's aggressive, we caught it at the earliest possible time.
But because of the stage 3 and lymph nodes, I'll go through both chemo and radiation. And since I won't see her again until 6 months, my guess is that's the estimate of time I'll be on chemo. But 6 months can fly by right?
Whew, doing well though. Was preparing for this. Wish I'd know more about the chemo, but all in due time. Recovering nicely, the right arm/side is still, and will problematic (most likely for the next year or two).
Did a little fashion show with my current wardrobe. Good news is that I was so much in denial about my DDs that I stuffed them into outfits I most likely shouldn't have, that everything fits better than ever before. Bad news? I DON'T GET A NEW WARDROBE!
NO TUMMY TUCK?
NO NEW WARDROBE?
Chemo better put me on a weight loss program and not have me be the 1 in 100 that gain weight. Seriously. Somethime good MUST come out of this. You know, besides my nice, new perky tatas and actually surviving it. Ok, I understand what I just wrote. Don't judge.
And the meals? Thanks go out especially to Amber Ford, Becca Ayers, Scotte Hardin, Jen Conley, Margaux Laskey, Chris & Lydia Kindred, Katie Nicholson, Mara McEwin, Melissa Caolo, Erin & Tim Butterfield, Chelley Conales, Hillary Reeves, Carol Anderson and Lisa Jaeger. You've no idea how much we've all appreciated it, and how big of help it was to me and my family. And to my mom who came up to help me recover.
anyone up for another 6 months of this?
But today found out the pathology reports. Turns out cancer was in all four quadrants of my right breast, not just in the upper quadrant. The grading of the tumors totaled 8 out of 9, which means it's stage 3 and very aggressive. The tumors ranged in size of .3 cm to 2.5 cm, the largest of which is what I most likely felt. And understandable as to why we (me and my gyn) didn't feel anything three months earlier. So, go ahead and measure what's 2.5 cm. Pretty tiny, right?
They removed 24 lymph nodes, 8 of which came back positive for cancer. I was on the edge of freaking, but she assured me that it was a good thing. The lymph nodes go through your entire body and only a third in that area were cancerous, so with the results of a clear PetCT scan, it's a good thing.
Also, confirmed that there was absolutely no cancer in the left breast. So even though it's aggressive, we caught it at the earliest possible time.
But because of the stage 3 and lymph nodes, I'll go through both chemo and radiation. And since I won't see her again until 6 months, my guess is that's the estimate of time I'll be on chemo. But 6 months can fly by right?
Whew, doing well though. Was preparing for this. Wish I'd know more about the chemo, but all in due time. Recovering nicely, the right arm/side is still, and will problematic (most likely for the next year or two).
Did a little fashion show with my current wardrobe. Good news is that I was so much in denial about my DDs that I stuffed them into outfits I most likely shouldn't have, that everything fits better than ever before. Bad news? I DON'T GET A NEW WARDROBE!
NO TUMMY TUCK?
NO NEW WARDROBE?
Chemo better put me on a weight loss program and not have me be the 1 in 100 that gain weight. Seriously. Somethime good MUST come out of this. You know, besides my nice, new perky tatas and actually surviving it. Ok, I understand what I just wrote. Don't judge.
And the meals? Thanks go out especially to Amber Ford, Becca Ayers, Scotte Hardin, Jen Conley, Margaux Laskey, Chris & Lydia Kindred, Katie Nicholson, Mara McEwin, Melissa Caolo, Erin & Tim Butterfield, Chelley Conales, Hillary Reeves, Carol Anderson and Lisa Jaeger. You've no idea how much we've all appreciated it, and how big of help it was to me and my family. And to my mom who came up to help me recover.
anyone up for another 6 months of this?
Monday, September 26, 2011
Surgery & Recovery
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
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
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
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