No more Chemo! I did my last Chemo infusion yesterday and today was my last hydration. No one will be poking my port anymore. I can have it removed at my mastectomy. I AM THRILLED!!! I am also thrilled to report that I did not have to have the "shot"...I was scheduled to get it but I asked Dr. McAndrew if it was truly necessary and she said since it was my last one that I could skip it. SUPER DUPER THRILLED!! I know the steroids are starting to wear off but I am feeling pretty good so far. Acupuncture this morning helped too. And the fact that I am in a positive mood and good spirits I believe is going to get me through this hard part over the next few days.
I have a ton more things to update on after my meeting with Dr. McAndrew but I'm really tired so I'll try to post again soon. The biggest update is that my surgery could be as soon as three weeks. However, I'm still trying to get into see Dr. Hayden's work (her before and after photos) and discuss her strategy for the surgery. I've left two messages so far and I'm getting anxious. I want that surgery date scheduled. It will make me relax that much more to know when it will be happening.
Tuesday, March 29, 2011
Saturday, March 26, 2011
Loving Kindness
I wish I could be kinder to myself. My body is really taking a beating. That doesn't mean that my mind and spirit has to take a beating too. I am finally getting over this darn cold. And my hair started falling out Wednesday so I had to give in two days later and shave my head. Aunt Flow came to visit too on Friday. At least I was able to go to ballet this week despite the cold and the unexpected visit (which opens up a whole different can of worms since Dr. Daly was trying to figure out if I could get pregnant on Chemo). The other thing that is bothering me is that I have really lost (I'd say over the past few weeks) my joy for food. I don't really crave anything and nothing "sounds" good to me. I just kind of pick something that I would normally eat, eat it and then move on. I'm eating less too. The only thing I like these days are my green smoothies. I really just want vegetables. It could be that I have brainwashed myself and it really isn't a conscious choice anymore to be a vegetarian.
Anyway, I also wonder if it was inevitable that my hair would fall out again or that maybe if I didn't get a cold and a visit from Aunt Flow that my hair would still be attached to my head. Or it could be the stress from trying to be supermom and spend quality time with each kid, trying to make a decision about a breast and a plastic surgeon, trying to make a decision about my breasts, yada yada yada. It's enough to make anyone positively insane.
All that being said, I really want to learn to be kinder to myself. Our therapist Pam was telling me about a meditation from a lecture she went to with Sharon Salzberg. It's called the Loving Kindness Meditation or sometimes called the Metta Meditation. I have been obsessed, or as much as I can be, in all my free time with learning about this. The first time that I did this I had streams of tears as I read the meditation out loud to myself. (Eventually I will be able to do this quietly in my mind as well...)
So the loving-kindness meditation is an ancient meditation practice taught by the Buddha himself which is designed to bring unconditional love to your Self, your loved ones and to beings throughout the universe. It helps bring peace to various situations taking place in your life. It also allows you to look at the world in a more positive light. It brings about positive attitudinal changes - as it systematically develops the quality of 'loving-acceptance'. It acts as a form of self-psychotherapy, a way of healing the troubled mind to free it from its pain and confusion. Of all Buddhist meditations, loving-kindness has the immediate benefit of sweetening and changing old habituated negative patterns of mind.
"Begin by repeating the following phrases over and over for 15-20 minutes once or twice daily in a quite place for several months. At first this meditation may feel mechanical or awkward or even bring up the opposite feelings of irritation and anger. If this happens, it is especially important to be patient and kind toward yourself, allowing whatever arises to be received in a spirit of friendliness and kind affection. In its own time, even in the face of inner difficulties, loving- kindness will develop."
"Sit in a comfortable fashion. Let your body relax and be at rest. As best you can, let your mind be quiet, letting go of plans and preoccupations. (THIS IS SO VERY HARD FOR ME TO DO). Then begin to recite inwardly the following phrases directed to yourself. You begin with yourself because without loving yourself it is almost impossible to love others."
"Practice this meditation repeatedly for a number of weeks until the sense of loving-kindness for yourself grows."
"When you feel ready, in the same meditation period you can gradually expand the focus of your loving-kindness to include others. After yourself, choose a benefactor, someone in your life who has truly cared for you. Picture them and carefully recie the same phrases: May he/she be filled with loving- kindness and so forth. When loving-kindess for your benefactor has developed, begin to include other people you love in the meditation, picturing them and reciting the same phrases, evoking a sense of loving-kindness ofor them."
"After this, you can gradually begin to include others: friends, community members, neighbors, people everywhere, animals, the whole earth, and all beings. Then you can even experiment with including the most difficult poeple in your life, wishing that they, too, be filled with loving-kindess and peace. With some practice a steady sense of loving-kindness can develop and in the course of 15 or 20 minutes you will be able to include many beings in your meditation, moving from yourself, to a benefactor and loved ones, to all beings everywhere."
"Then you can learn to practice it anywhere. You can use this meditation in traffic jams, in buses and airplanes, in doctors' waiting rooms, in a thousand other circumstances. As you silently practice this loving-kindness meditation among people, you will immediately feel a wonderful connection with them -- the power of loving-kindness. It will calm your life and keep you connected to your heart."
Anyway, I also wonder if it was inevitable that my hair would fall out again or that maybe if I didn't get a cold and a visit from Aunt Flow that my hair would still be attached to my head. Or it could be the stress from trying to be supermom and spend quality time with each kid, trying to make a decision about a breast and a plastic surgeon, trying to make a decision about my breasts, yada yada yada. It's enough to make anyone positively insane.
All that being said, I really want to learn to be kinder to myself. Our therapist Pam was telling me about a meditation from a lecture she went to with Sharon Salzberg. It's called the Loving Kindness Meditation or sometimes called the Metta Meditation. I have been obsessed, or as much as I can be, in all my free time with learning about this. The first time that I did this I had streams of tears as I read the meditation out loud to myself. (Eventually I will be able to do this quietly in my mind as well...)
So the loving-kindness meditation is an ancient meditation practice taught by the Buddha himself which is designed to bring unconditional love to your Self, your loved ones and to beings throughout the universe. It helps bring peace to various situations taking place in your life. It also allows you to look at the world in a more positive light. It brings about positive attitudinal changes - as it systematically develops the quality of 'loving-acceptance'. It acts as a form of self-psychotherapy, a way of healing the troubled mind to free it from its pain and confusion. Of all Buddhist meditations, loving-kindness has the immediate benefit of sweetening and changing old habituated negative patterns of mind.
Here are the instructions as taken from "A Path With Heart" by Jack Kornfield, (Bantham Books 1993) but it is also possible to recite to oneself the Buddha's discourse on kindness
"Begin by repeating the following phrases over and over for 15-20 minutes once or twice daily in a quite place for several months. At first this meditation may feel mechanical or awkward or even bring up the opposite feelings of irritation and anger. If this happens, it is especially important to be patient and kind toward yourself, allowing whatever arises to be received in a spirit of friendliness and kind affection. In its own time, even in the face of inner difficulties, loving- kindness will develop."
"Sit in a comfortable fashion. Let your body relax and be at rest. As best you can, let your mind be quiet, letting go of plans and preoccupations. (THIS IS SO VERY HARD FOR ME TO DO). Then begin to recite inwardly the following phrases directed to yourself. You begin with yourself because without loving yourself it is almost impossible to love others."
May I be filled with loving-kindess"As you say the phrases, you may also wish to use the image from the Buddha's instructions: picture yourself as a young and beloved child, or sense yourself as you are now, held in the heart of loving-kindness. Repeat the phrases again and again, letting the feelings permeate your body and mind."
May I be well
May I be peaceful and at ease
May I be happy
"Practice this meditation repeatedly for a number of weeks until the sense of loving-kindness for yourself grows."
"When you feel ready, in the same meditation period you can gradually expand the focus of your loving-kindness to include others. After yourself, choose a benefactor, someone in your life who has truly cared for you. Picture them and carefully recie the same phrases: May he/she be filled with loving- kindness and so forth. When loving-kindess for your benefactor has developed, begin to include other people you love in the meditation, picturing them and reciting the same phrases, evoking a sense of loving-kindness ofor them."
"After this, you can gradually begin to include others: friends, community members, neighbors, people everywhere, animals, the whole earth, and all beings. Then you can even experiment with including the most difficult poeple in your life, wishing that they, too, be filled with loving-kindess and peace. With some practice a steady sense of loving-kindness can develop and in the course of 15 or 20 minutes you will be able to include many beings in your meditation, moving from yourself, to a benefactor and loved ones, to all beings everywhere."
"Then you can learn to practice it anywhere. You can use this meditation in traffic jams, in buses and airplanes, in doctors' waiting rooms, in a thousand other circumstances. As you silently practice this loving-kindness meditation among people, you will immediately feel a wonderful connection with them -- the power of loving-kindness. It will calm your life and keep you connected to your heart."
Friday, March 25, 2011
Too Much Time on My Hands!
Is it any wonder I'm not crazy?
Is it any wonder I'm sane at all
Well I'm so tired of losing- I got nothing to do and all day to do it
Too much time on my hands,
it's ticking away with my sanity
I've got too much time on my hands,
it's hard to believe such a calamity
I've got too much time on my hands
and it's ticking away from me
Too much time on my hands,
Too much time on my hands,
Too much time on my hands
Who doesn't love them some Styx? But I am only kidding. I can't find enough hours in the day. Am I right? Or am I right?
SHAVED THE HEAD TODAY. I know ya'll were on pins and needles to see if I was going to do it or not. Ha ha ha!!
Is it any wonder I'm sane at all
Well I'm so tired of losing- I got nothing to do and all day to do it
Too much time on my hands,
it's ticking away with my sanity
I've got too much time on my hands,
it's hard to believe such a calamity
I've got too much time on my hands
and it's ticking away from me
Too much time on my hands,
Too much time on my hands,
Too much time on my hands
Who doesn't love them some Styx? But I am only kidding. I can't find enough hours in the day. Am I right? Or am I right?
SHAVED THE HEAD TODAY. I know ya'll were on pins and needles to see if I was going to do it or not. Ha ha ha!!
Wednesday, March 23, 2011
Son of a Biscuit
Well it's 7:45 and both babies are down for the night and the husband is on a plane so...that means I get to do WHATEVER I want! Woo hoo. Live it up. (or lay in bed and watch American Idol (I heart Steven Tyler and boy, I love me some Motown) and type out my blog...)
The Son of a Biscuit reference refers to the fact that my stupid hair is starting to fall out again. WTF. So close to the end. I was starting to get a cute pixie cut. Or maybe not. Sharon told me she thought I looked like Hilary Swank in Boys Don't Cry. Ummmm, thanks?!?! But seriously, Abby has started to run her fingers through my hair when I rock her to sleep and it is so cute, but tonight I had to stop her for fear she would accidentally make more come out. The goal for now is to not touch it, wash it or brush it cause it may create large patches. Ugh. Ugh. Ugh.
Maybe I should take a vote. Let me know if I should:
A) Shave it again
B) Let what I have stay and whatever falls out thins out my hair (and hopefully only makes me look like I have male pattern baldness or random bald patches in various areas that later when the other hair grows out I can hide with comb over patches)
I'm leaning towards B. I didn't enjoy looking like Telly Savalas and I don't want to do it again if I don't have to!
Currently, I am researching rentals in East Hampton for August through Labor Day. This is going to be my "something to look forward to"...after chemotherapy, after surgery, after radiation, after reconstruction. I freaking deserve a vacation after all this junk. Stupid cancer. A relaxing time where we can enjoy clam bakes on the beach, meditation by the pool, Abby running in the ocean, Leo slobbering and eating sand, and shopping and dinners with friends and family. Nirvana.
I am close to making up my mind about surgery. I left a message for Dr. Hayden today. I want to make sure that Dr. Chung's numbers on lymphedema are as low as Dr. Guiliano. I love the idea of having an amazing team of female surgeons but I want to protect my chances of not developing lymphedema. That really scares me. I do like the fact that Dr. Chung is accessible. I emailed her last week and she got back to me the next day. Dr. Hayden has full confidence in her ability and talent so I want to understand her experience a little better. So the plan will be mastectomy of the left breast. Begin reconstruction at the same time with expander. Pump up the expander during the four weeks of recovery before radiation. Then radiation for 4-6 weeks. Recover (not sure the time period of that recovery before the final reconstruction surgery. That surgery will be to remove expander and insert implant and at the same time reduce and lift the right best to aesthetically match the left. Whew.
OMG, do not like Jennifer's eye make-up tonight. But HELLO Steven Tyler, he looks like a caveman island chief in that leopard print outfit with his shark earrings and ivory necklaces. Ooga Booga! Still the man can do no wrong. Am I right? Competition tonight is fierce. Such a great show. Too bad I can never watch it all the way through in time to vote for anyone. This is the first time I actually get to watch it live....but I bet I won't make it up all the way through. Yaaawwwwnnnn.
Nightly night!!
The Son of a Biscuit reference refers to the fact that my stupid hair is starting to fall out again. WTF. So close to the end. I was starting to get a cute pixie cut. Or maybe not. Sharon told me she thought I looked like Hilary Swank in Boys Don't Cry. Ummmm, thanks?!?! But seriously, Abby has started to run her fingers through my hair when I rock her to sleep and it is so cute, but tonight I had to stop her for fear she would accidentally make more come out. The goal for now is to not touch it, wash it or brush it cause it may create large patches. Ugh. Ugh. Ugh.
Maybe I should take a vote. Let me know if I should:
A) Shave it again
B) Let what I have stay and whatever falls out thins out my hair (and hopefully only makes me look like I have male pattern baldness or random bald patches in various areas that later when the other hair grows out I can hide with comb over patches)
I'm leaning towards B. I didn't enjoy looking like Telly Savalas and I don't want to do it again if I don't have to!
Currently, I am researching rentals in East Hampton for August through Labor Day. This is going to be my "something to look forward to"...after chemotherapy, after surgery, after radiation, after reconstruction. I freaking deserve a vacation after all this junk. Stupid cancer. A relaxing time where we can enjoy clam bakes on the beach, meditation by the pool, Abby running in the ocean, Leo slobbering and eating sand, and shopping and dinners with friends and family. Nirvana.
I am close to making up my mind about surgery. I left a message for Dr. Hayden today. I want to make sure that Dr. Chung's numbers on lymphedema are as low as Dr. Guiliano. I love the idea of having an amazing team of female surgeons but I want to protect my chances of not developing lymphedema. That really scares me. I do like the fact that Dr. Chung is accessible. I emailed her last week and she got back to me the next day. Dr. Hayden has full confidence in her ability and talent so I want to understand her experience a little better. So the plan will be mastectomy of the left breast. Begin reconstruction at the same time with expander. Pump up the expander during the four weeks of recovery before radiation. Then radiation for 4-6 weeks. Recover (not sure the time period of that recovery before the final reconstruction surgery. That surgery will be to remove expander and insert implant and at the same time reduce and lift the right best to aesthetically match the left. Whew.
OMG, do not like Jennifer's eye make-up tonight. But HELLO Steven Tyler, he looks like a caveman island chief in that leopard print outfit with his shark earrings and ivory necklaces. Ooga Booga! Still the man can do no wrong. Am I right? Competition tonight is fierce. Such a great show. Too bad I can never watch it all the way through in time to vote for anyone. This is the first time I actually get to watch it live....but I bet I won't make it up all the way through. Yaaawwwwnnnn.
Nightly night!!
Monday, March 21, 2011
Whatta week.
Sorry I haven't posted in a bit. It was a crazy week last week. Oh wait, I can't use that word to qualify my week since I've been overusing it, don't you think?? That's that whole "new level of normal" thing kicking in. It was a USUAL crazy, in layman's terms, week for me except for the addition of a) not sleeping Tuesday night b) getting a cold a few days later c) Abby waking up in the middle of the night several times over the past few days (she swears there are spiders in her bed) and d) my final interview with the last on my list of plastic surgeons.
A) Tuesday I had made the mistake of watching the news about Japan all day (and snippets for several days before that) then Sharon came over Tuesday night to walk me through surgical options plus dealing with surgery and recovery while caring for two young kids. I had so much on my mind and David was out of town so I could not get to sleep. I tried and tried. Usually, you could hang me on a doornail and I could sleep. I didn't want to take any drugs since my body is already being pumped with so much poison (that and oh, I never filled my prescriptions for any of those drugs) so I just laid there and laid there some more until I finally got to sleep around 2:30 in the morning.Then as usual was up at 6ish with Leo. I was a wreck. But of course, despite being a wreck I went to pilates. For some reason that day was the day Milla decided to really make the session hard. Ugh.
B) Needless to say Thursday I was feeling really weak and eventually came down with a cold. Just your run of the mill, headache and sore throat which has now become chest congestion, cough and a case of the blahs. I decided Thursday to fill my ativan prescription, or actually I should say, my very helpful mother in law Sue went and filled it for me (thank you!) and took that Thursday and Friday night with some sore throat spray in hopes that rest would ward off the cold from becoming full blown. Well good luck with that when you have a suppressed immune system off of Chemo! Oh but I only jest. It's not unmanageable, just annoying and another thing that makes me more tired on top of the Chemo.
C) Abby has entered the "magical" phase where her imagination seems to get the best of her sometimes. Case in point. Spiders. She thinks that they are in her bed and has screaming fits. She is also like this with bees, flies and beetles. I don't know when she developed that fear but I can certainly identify. If I wasn't trying to bravely show her all the time that if we "leave the bees alone they won't hurt us" I would be running and screaming for the hills every time I saw one myself. So we are dealing with that. Last night I pulled a Christina, only she'll know what I mean, and got into Abby's crib with her to show her that indeed there were NO spiders and indeed you CAN sleep on that half of the bed. She seemed to be much more calm about it today during her nap so hopefully that helped. We'll know if she actually sleeps through the night tonight. Fingers crossed.
D) Plastic Surgeons and General Surgeons. Ugh.....I have had so much on my plate and then to top it off I am mulling over the possibilities of potential surgeries. I have had so many conversations with so many doctors but the last interview I had with Dr. Barbara Hayden was the best. She was amazing. She is a breast cancer survivor herself so she had a very unique perspective to share. She also is a friend of some friends of ours so 1) I was able to get in to see her on short notice and 2) she was much more candid with me than she would ever be with a patient. Or as she said, she wasn't being very politically correct in our interview. She said that all the doctors will just keep providing options but none will ever suggest one thing over another since they want to cover their ass. In the CYA methodology they provide you with statistics and make suggestions but no one wants to be held liable if a recurrence were to happen. Of course. Barbara said that her experience as a cancer patient completely changed and improved upon her practice as a doctor. That being said, she helped me map out the decision based on my unique situation. In the pro's column against mastectomy (and for lumpectomy) we have 1) not a BRCA1 gene carrier and 2) radiation necessary regardless. In the con's column for mastectomy we have 1) my age (I'm only 34 for a few more months) and the chance that it comes back in my lifetime is very high 2) the size of my tumor shows it was an aggressive cancer and may have satellite groups of cells so margins may not clear during lumpectomy and 3) radiation. Also against lumpectomy was the fact that I want to have a reduction and lift. That creates more scar tissue which would light up in my yearly scans and make me worry more. She said there would always be some "inconclusive" areas in an MRI or scan due to that scar tissue and they would want to do more tests which would only make me unnecessarily worry.
Now why would radiation be both a positive and negative? Having radiation may reduce my risk of recurrence by two thirds BUT if I did have a recurrence I would then HAVE to have a mastectomy and reconstruction AND...reconstruction under radiated tissue is much more difficult and removes several reconstruction options. She suggested that I have a mastectomy and reconstruction of the left breast. Then have the radiation, take the time to heal and then the final reconstruction. I would then have a reduction and lift of the right breast to match the left breast. She said that the recovery would be faster and I would be in less pain. She said having a mastectomy is hard and having a double mastectomy is doubly hard. She wouldn't want me to do a double mastectomy unnecessarily.
After all that we had the most lovely conversation that had me in tears. About taking care of myself. About being kind to myself. About how cancer is a wake up call. About how I need to listen to my body. About how I need to NOT watch the news at all right now. About how I need to do more things like watching kid movies with my sister or cartoons with Abby. About how right now is that time to try to cancel things on my schedule, to stop having unimportant commitments, to be present in the moments, to laugh, to love, to be happy and to STOP doing anything that makes me unhappy. About the need to keep my cortisol levels down. Stress is the enemy!!
She also shared the unique perspective about how once you are diagnosed with a life threatening illness or have experience a profound loss (2 for 2 on that one unfortunately) you cross this invisible line in life that separates you from others who have not had to face their own mortality. She said that is possibly why I had such a hard time with the devastation in Japan and why I should not be watching the news. Right now is not the time to be worrying for others in that way. It's true I can't help feeling deep within my being the torment and pain that the Japanese people must be feeling. That is why I need to shield myself from having to go there. Later yes. Now not so much. So the red cross will be getting a donation from us but until I feel stronger I will no longer be glued to CNN...
We talked about so many things and I just loved her. Oh and she happens to be one of the BEST surgeons in Los Angeles. That means, of course, that I want no one other than her to do my surgery. So that was good news. The bad news is that she had a couple of things to say about the general surgeons I had interviewed. Barbara only works at St. John's so that leaves my choices to Dr. Armando Giuliano and Dr. Alice Chung (both of whom I have seen). She leaned towards Dr. Chung which wasn't what I was thinking (she gave me some reasons that I'm not to repeat). I really like Dr. Phillips but he doesn't work at St. John's. Major dilemma!! So I have some more research to do in talking with others about their experiences with Dr. Giuliano to make the final decision.
Ohhhhh, way past my bed time now. That won't help me get better... Good night!!
A) Tuesday I had made the mistake of watching the news about Japan all day (and snippets for several days before that) then Sharon came over Tuesday night to walk me through surgical options plus dealing with surgery and recovery while caring for two young kids. I had so much on my mind and David was out of town so I could not get to sleep. I tried and tried. Usually, you could hang me on a doornail and I could sleep. I didn't want to take any drugs since my body is already being pumped with so much poison (that and oh, I never filled my prescriptions for any of those drugs) so I just laid there and laid there some more until I finally got to sleep around 2:30 in the morning.Then as usual was up at 6ish with Leo. I was a wreck. But of course, despite being a wreck I went to pilates. For some reason that day was the day Milla decided to really make the session hard. Ugh.
B) Needless to say Thursday I was feeling really weak and eventually came down with a cold. Just your run of the mill, headache and sore throat which has now become chest congestion, cough and a case of the blahs. I decided Thursday to fill my ativan prescription, or actually I should say, my very helpful mother in law Sue went and filled it for me (thank you!) and took that Thursday and Friday night with some sore throat spray in hopes that rest would ward off the cold from becoming full blown. Well good luck with that when you have a suppressed immune system off of Chemo! Oh but I only jest. It's not unmanageable, just annoying and another thing that makes me more tired on top of the Chemo.
C) Abby has entered the "magical" phase where her imagination seems to get the best of her sometimes. Case in point. Spiders. She thinks that they are in her bed and has screaming fits. She is also like this with bees, flies and beetles. I don't know when she developed that fear but I can certainly identify. If I wasn't trying to bravely show her all the time that if we "leave the bees alone they won't hurt us" I would be running and screaming for the hills every time I saw one myself. So we are dealing with that. Last night I pulled a Christina, only she'll know what I mean, and got into Abby's crib with her to show her that indeed there were NO spiders and indeed you CAN sleep on that half of the bed. She seemed to be much more calm about it today during her nap so hopefully that helped. We'll know if she actually sleeps through the night tonight. Fingers crossed.
D) Plastic Surgeons and General Surgeons. Ugh.....I have had so much on my plate and then to top it off I am mulling over the possibilities of potential surgeries. I have had so many conversations with so many doctors but the last interview I had with Dr. Barbara Hayden was the best. She was amazing. She is a breast cancer survivor herself so she had a very unique perspective to share. She also is a friend of some friends of ours so 1) I was able to get in to see her on short notice and 2) she was much more candid with me than she would ever be with a patient. Or as she said, she wasn't being very politically correct in our interview. She said that all the doctors will just keep providing options but none will ever suggest one thing over another since they want to cover their ass. In the CYA methodology they provide you with statistics and make suggestions but no one wants to be held liable if a recurrence were to happen. Of course. Barbara said that her experience as a cancer patient completely changed and improved upon her practice as a doctor. That being said, she helped me map out the decision based on my unique situation. In the pro's column against mastectomy (and for lumpectomy) we have 1) not a BRCA1 gene carrier and 2) radiation necessary regardless. In the con's column for mastectomy we have 1) my age (I'm only 34 for a few more months) and the chance that it comes back in my lifetime is very high 2) the size of my tumor shows it was an aggressive cancer and may have satellite groups of cells so margins may not clear during lumpectomy and 3) radiation. Also against lumpectomy was the fact that I want to have a reduction and lift. That creates more scar tissue which would light up in my yearly scans and make me worry more. She said there would always be some "inconclusive" areas in an MRI or scan due to that scar tissue and they would want to do more tests which would only make me unnecessarily worry.
Now why would radiation be both a positive and negative? Having radiation may reduce my risk of recurrence by two thirds BUT if I did have a recurrence I would then HAVE to have a mastectomy and reconstruction AND...reconstruction under radiated tissue is much more difficult and removes several reconstruction options. She suggested that I have a mastectomy and reconstruction of the left breast. Then have the radiation, take the time to heal and then the final reconstruction. I would then have a reduction and lift of the right breast to match the left breast. She said that the recovery would be faster and I would be in less pain. She said having a mastectomy is hard and having a double mastectomy is doubly hard. She wouldn't want me to do a double mastectomy unnecessarily.
After all that we had the most lovely conversation that had me in tears. About taking care of myself. About being kind to myself. About how cancer is a wake up call. About how I need to listen to my body. About how I need to NOT watch the news at all right now. About how I need to do more things like watching kid movies with my sister or cartoons with Abby. About how right now is that time to try to cancel things on my schedule, to stop having unimportant commitments, to be present in the moments, to laugh, to love, to be happy and to STOP doing anything that makes me unhappy. About the need to keep my cortisol levels down. Stress is the enemy!!
She also shared the unique perspective about how once you are diagnosed with a life threatening illness or have experience a profound loss (2 for 2 on that one unfortunately) you cross this invisible line in life that separates you from others who have not had to face their own mortality. She said that is possibly why I had such a hard time with the devastation in Japan and why I should not be watching the news. Right now is not the time to be worrying for others in that way. It's true I can't help feeling deep within my being the torment and pain that the Japanese people must be feeling. That is why I need to shield myself from having to go there. Later yes. Now not so much. So the red cross will be getting a donation from us but until I feel stronger I will no longer be glued to CNN...
We talked about so many things and I just loved her. Oh and she happens to be one of the BEST surgeons in Los Angeles. That means, of course, that I want no one other than her to do my surgery. So that was good news. The bad news is that she had a couple of things to say about the general surgeons I had interviewed. Barbara only works at St. John's so that leaves my choices to Dr. Armando Giuliano and Dr. Alice Chung (both of whom I have seen). She leaned towards Dr. Chung which wasn't what I was thinking (she gave me some reasons that I'm not to repeat). I really like Dr. Phillips but he doesn't work at St. John's. Major dilemma!! So I have some more research to do in talking with others about their experiences with Dr. Giuliano to make the final decision.
Ohhhhh, way past my bed time now. That won't help me get better... Good night!!
Friday, March 18, 2011
When I am well...
I want to do this - http://www.bigskyyogaretreats.com/retreats/pages/cowgirl_yoga.html
Cowgirl Yoga Retreat. Yoga and Horseback riding retreats in Montana. Any takers? I wish I could get David to be interested but I'm sure he'd say to make it a girl's trip...I read about it while waiting to see one of the surgeons and I literally started balling. I think my body and soul really needs something like this to feel whole again and move on. I want to make this my get well trip.
Cowgirl Yoga Retreat. Yoga and Horseback riding retreats in Montana. Any takers? I wish I could get David to be interested but I'm sure he'd say to make it a girl's trip...I read about it while waiting to see one of the surgeons and I literally started balling. I think my body and soul really needs something like this to feel whole again and move on. I want to make this my get well trip.
Tuesday, March 15, 2011
In other news...
I was finally able to watch some of the news about the devastation in Japan. I just keep thinking, were there people in those cars? Were they parked cars? During my first pregnancy I kept having these recurring nightmares about the devastation of the world. It was more like Noah's Ark and I would tell David in my dreams that something bad was coming and to remove all our cash from the bank. I told him the cash will be worthless. We have to buy a boat. The world will be overcome with flooding and the only way to survive will be on a boat. I have no idea why I have dreams like that. They are randomly recurring. I hate to see things like that happen in real life. I know how panicked I felt in my dreams. I cannot fathom the fear and shock that the Japanese people are experiencing.
In other news, I have cancer. It's still there. I'm kind of pissed about it.
I am feeling somewhat better. I went to Tower Oncology yesterday for my CBC labs and dunh dunh dunh, the blood counts were good. My neurophils were 2.9 compared to 1.4 a week ago, apparently that stupid Neulasta shot worked despite the pain it caused. I did give Angela, the nurse practitioner, a piece of my mind since I feel they should have told me to start taking the combination of claritin, aleve and tylenol early to preempt any bone pain and side effects. She said "oh, no one told you that?" Well yes, someone mentioned it to me while I was being injected with benadryl and groggy but I didn't think to write it down. They need a freaking handout! It's on the message boards but why Tower doesn't publicize it is beyond me. I certainly don't have time to scour the internet for information that they already know yet forget to tell me about. Annoying.
Yesterday my lips started randomly tingling. It's so weird. Like I put that infant teething gel on my lips for kicks. They still feel a little numb today. I did make it to ballet today but was having a hard time. I did fine at the bar but when we went to center I seriously looked like that elephant on sesame street that thinks he is a ballerina. Mental picture, are you seeing it? I was tripping over my two left feet. Sucks. I know I should give myself some credit for even being there so I won't rip on myself too much more. My left heel was giving me some issues...tingling, numbness and jolts of pain just randomly. And now my right pinky finger feels super tender to the touch as if I burnt it on the curling iron (except I didn't). Apparently, that is the neuropathy starting. I'm not too happy about that so later tonight I will have to do more research to figure out if there are additional supplements I can take to mitigate it. The problem, I have read, with Taxol/carboplatin is that the neuropathy can be permanent. WTF?!?!?!? I clearly don't want that to happen so I need to get ahead of it right now!
In other more serious news, Leo is delicious and Abby is adorable. They make me so happy despite that sinking feeling that I am being a horrible, inattentive mother. I know I am doing my best. I'm in treatment for cancer, meeting with doctors and making incredulous decisions that most people will never have to think about; like getting rid of my breasts or not... Cancer is still robbing me of precious moments. I'm not so fun and fancy free anymore. I'm a mother to two young kids. Hard. I'm fighting cancer. Double hard. I'm making it work the best way I know how. I'm thankful I have amazing family and friends to support me. Keep your head up Jessica!!! Stay positive. It's almost over.
Well, sort of. Last Chemo is the 28th and to be really honest, I am so super duper scared to do it. I'm worried after how I felt last week and I know the next and final triple dose could really be a doozy. UGGGGGGHHHHHHHHH. I don't want to. I don't want to. I don't want to. I'm just being honest!!
I still haven't even told you about the visits with plastic surgeons. Another visit, and my final one, is this Thursday, Dr. Barbara Hayden. I'm meeting another breast surgeon tomorrow, Dr. Ed Phillips.
Also, my two cents, Real Housewives of Orange County totally sucks. So lame. But I watched Zathura with Lindsey over the weekend and we had a good laugh. Kid movies keep things light.
In other news, I have cancer. It's still there. I'm kind of pissed about it.
I am feeling somewhat better. I went to Tower Oncology yesterday for my CBC labs and dunh dunh dunh, the blood counts were good. My neurophils were 2.9 compared to 1.4 a week ago, apparently that stupid Neulasta shot worked despite the pain it caused. I did give Angela, the nurse practitioner, a piece of my mind since I feel they should have told me to start taking the combination of claritin, aleve and tylenol early to preempt any bone pain and side effects. She said "oh, no one told you that?" Well yes, someone mentioned it to me while I was being injected with benadryl and groggy but I didn't think to write it down. They need a freaking handout! It's on the message boards but why Tower doesn't publicize it is beyond me. I certainly don't have time to scour the internet for information that they already know yet forget to tell me about. Annoying.
Yesterday my lips started randomly tingling. It's so weird. Like I put that infant teething gel on my lips for kicks. They still feel a little numb today. I did make it to ballet today but was having a hard time. I did fine at the bar but when we went to center I seriously looked like that elephant on sesame street that thinks he is a ballerina. Mental picture, are you seeing it? I was tripping over my two left feet. Sucks. I know I should give myself some credit for even being there so I won't rip on myself too much more. My left heel was giving me some issues...tingling, numbness and jolts of pain just randomly. And now my right pinky finger feels super tender to the touch as if I burnt it on the curling iron (except I didn't). Apparently, that is the neuropathy starting. I'm not too happy about that so later tonight I will have to do more research to figure out if there are additional supplements I can take to mitigate it. The problem, I have read, with Taxol/carboplatin is that the neuropathy can be permanent. WTF?!?!?!? I clearly don't want that to happen so I need to get ahead of it right now!
In other more serious news, Leo is delicious and Abby is adorable. They make me so happy despite that sinking feeling that I am being a horrible, inattentive mother. I know I am doing my best. I'm in treatment for cancer, meeting with doctors and making incredulous decisions that most people will never have to think about; like getting rid of my breasts or not... Cancer is still robbing me of precious moments. I'm not so fun and fancy free anymore. I'm a mother to two young kids. Hard. I'm fighting cancer. Double hard. I'm making it work the best way I know how. I'm thankful I have amazing family and friends to support me. Keep your head up Jessica!!! Stay positive. It's almost over.
Well, sort of. Last Chemo is the 28th and to be really honest, I am so super duper scared to do it. I'm worried after how I felt last week and I know the next and final triple dose could really be a doozy. UGGGGGGHHHHHHHHH. I don't want to. I don't want to. I don't want to. I'm just being honest!!
I still haven't even told you about the visits with plastic surgeons. Another visit, and my final one, is this Thursday, Dr. Barbara Hayden. I'm meeting another breast surgeon tomorrow, Dr. Ed Phillips.
Also, my two cents, Real Housewives of Orange County totally sucks. So lame. But I watched Zathura with Lindsey over the weekend and we had a good laugh. Kid movies keep things light.
Friday, March 11, 2011
More of the same
I haven't been out of bed for the past two days. I do not think it is the Chemo, I think it is the Nuelasta shot. Apparently they call it the "SHOT" for a reason. I feel like a bus ran over my legs. I missed my first ballet class yesterday but there was just no way I could tackle it. It's annoying. The only way to describe the bone pain is to imagine runner's shin splints but it's the bones that are aching not the muscle. Then there's the general fatigue that has kicked in. I want to find out if I really have to have this shot. I can't speak for my white blood cells but I think I've handled Chemo so far just fine without it.
I've been having some nice bonding time with Leo since all I can do is lay around the house. Here is an adorable video of him in his USC outfit...this is all he has until I can find a Cal Bears outfit. Go Trojans, no...Go Bears!! He is so delicious and he loves to flirt with me. It keeps my spirits up!
I think I'll go soak in an epsom salt bath to relieve some of the pain. Fingers crossed for a better weekend!! The weather is absolutely gorgeous here. It is hard to believe there was an 8.9 earthquake in Japan that caused a tsunami large enough to effect our coastline. Mother nature is unrelenting. I'm saying a prayer for the Japanese people. Puts my cancer struggle into perspective. Let's be thankful.
I've been having some nice bonding time with Leo since all I can do is lay around the house. Here is an adorable video of him in his USC outfit...this is all he has until I can find a Cal Bears outfit. Go Trojans, no...Go Bears!! He is so delicious and he loves to flirt with me. It keeps my spirits up!
I think I'll go soak in an epsom salt bath to relieve some of the pain. Fingers crossed for a better weekend!! The weather is absolutely gorgeous here. It is hard to believe there was an 8.9 earthquake in Japan that caused a tsunami large enough to effect our coastline. Mother nature is unrelenting. I'm saying a prayer for the Japanese people. Puts my cancer struggle into perspective. Let's be thankful.
Wednesday, March 9, 2011
Holy Mack
Sorry to be so rude but ugggghhhhh. What a fucking day two days I've had. The steroids wore off today. Yesterday was better, woke up, had breakfast with Abby and Leo then headed to acupuncture with Dr. Mao. Went to the bank then went to ballet. Raced to the Palisades to meet Abby after her dance class. We are two ballerinas in a pod. She looks way more adorable in her dance gear though. Then we had lunch and she went home to nap. I headed to Tower for hydration. Oh, and the Neulasta shot. Yippee for me. I somehow had blocked that out of my head but my lovely nurse Mary Lou reminded me about it the minute she poked my port for the hydration. So about a half hour before I left I got the shot in my left arm. She warned I could have some bone aches and pain (and that most likely the next two days would be pretty rough for me)...Well, HELLO!!!
Wake up today and whammo. I feel like my legs weight a ton each. I'm moving pretty slow today. I took Leo for his check up with Dr. Gordon. The kid weighs 15 pounds. He's in the 90th percentile. But other than being absolutely perfect he has this horrible rash. Eczema. And it's all over his body. If it's not better by the weekend we'll start to worry (and call and email and text Dr. Jay). But I'm already worrying. I know I have a lot of stuff going on but stuff like that makes me feel like less of a mother than I hoped I would be. If I didn't have cancer I would be tending to his skin like the usual obsessive mother I am. Instead I am half a mother and half a cancer patient and I hate feeling so conflicted. Half-assed either way. So fucking rude. This is the most important time in my kids lives and I feel like I am missing so many details. Who's going to go buy his jojoba oil and lovingly rub it onto his chubby little arms and legs? I want to be the one to do it. Not anyone else. But life's not fair. How's that for winning Charlie Sheen? I'm not winning here and I'm not winning there. I guess I'm a troll!
I cancelled my appointment with Dr. Daly because I was too exhausted to drive over there. I napped for a while instead and then got ready to go see Dr. Ken Slate over at Cedars. Not really the best time to interview another plastic surgeon but he's hard to get in to see so I went anyway. 3 hours later I got home. My head is spinning from all the information but it was very helpful.
In other news, my teeth hurt and so do my legs. That achiness is starting. Now my left arm near my elbow is swollen and sore. Very weird. It could have been from carrying my bag around or maybe from the nurse taking my blood pressure today? Regardless it hurts and will be under watchful eye. I'm super bloated which I'm sure is from the hydration. I've noticed a ton of little bruises randomly on my body, that is from the low platelets apparently. Most of all I just feel incredibly tired. Plus now I have even more critical information in my head to mull over and I think my brain is going to explode any moment now....let's hope for a better day tomorrow.
Wake up today and whammo. I feel like my legs weight a ton each. I'm moving pretty slow today. I took Leo for his check up with Dr. Gordon. The kid weighs 15 pounds. He's in the 90th percentile. But other than being absolutely perfect he has this horrible rash. Eczema. And it's all over his body. If it's not better by the weekend we'll start to worry (and call and email and text Dr. Jay). But I'm already worrying. I know I have a lot of stuff going on but stuff like that makes me feel like less of a mother than I hoped I would be. If I didn't have cancer I would be tending to his skin like the usual obsessive mother I am. Instead I am half a mother and half a cancer patient and I hate feeling so conflicted. Half-assed either way. So fucking rude. This is the most important time in my kids lives and I feel like I am missing so many details. Who's going to go buy his jojoba oil and lovingly rub it onto his chubby little arms and legs? I want to be the one to do it. Not anyone else. But life's not fair. How's that for winning Charlie Sheen? I'm not winning here and I'm not winning there. I guess I'm a troll!
I cancelled my appointment with Dr. Daly because I was too exhausted to drive over there. I napped for a while instead and then got ready to go see Dr. Ken Slate over at Cedars. Not really the best time to interview another plastic surgeon but he's hard to get in to see so I went anyway. 3 hours later I got home. My head is spinning from all the information but it was very helpful.
In other news, my teeth hurt and so do my legs. That achiness is starting. Now my left arm near my elbow is swollen and sore. Very weird. It could have been from carrying my bag around or maybe from the nurse taking my blood pressure today? Regardless it hurts and will be under watchful eye. I'm super bloated which I'm sure is from the hydration. I've noticed a ton of little bruises randomly on my body, that is from the low platelets apparently. Most of all I just feel incredibly tired. Plus now I have even more critical information in my head to mull over and I think my brain is going to explode any moment now....let's hope for a better day tomorrow.
Monday, March 7, 2011
Oh, ugh. Winning.
Get ready for a Debbie Downer post. I am just feeling so depressed. Probably because it's Monday and probably because I'm here at Tower so I'm sure that's not abnormal. I'm kind of tired though too so that usually makes me feel down in the dumps. I was carrying the baby up the stairs this morning and I let myself succumb to the realization that I had to go to stupid Chemo. Ugh. That immediately changed my reality and therefore my mood. I did get to have a lovely morning with both Leo and Abby before I left so that made up for some of my doom and gloom.
We are a GO for Chemo today. I should be jumping for joy (REALLY!?!?!?) but I'm not. They are preparing my medications now except that it is for the higher dose. Before I even got here Dr. McAndrew prepared the order for the higher dose to be administered every three weeks. Pia informed me when I got here and was drawing my blood. Sometimes the communication with my oncology team isn't so great. I thought the idea was to check my blood first then make the decision but not so. I'm being switched to triple dose. Duh, winning!! Pia has told me that because I am switching to the higher dose I will have more pre-meds and will be at Tower all day for the infusion. Niiiiice.
On a side note, I am pissed that "they" (doctors and researchers) group stage 3 cancer with stage 4 cancer. That means I don't qualify for Dr. Guiliano's new study that supports not taking all lymph nodes during a lumpectomy with "early stage" cancers (i.e. Stage 0, 1 and 2). As I sat in the waiting room here at Tower I read a brochure from the "Cancer Support Community" that grouped Stage 3 with Stage 4 AND recurrent AND metastatic breast cancer together. Now, that really pisses me the fuck off. Isn't Stage 3 not considered terminal cancer? It's still only in a few lymph nodes, I am hoping that after my surgery Dr. Giuiliano will tell me that only a few nodes were positive and therefore he didn't have to take all 17 nodes out AND furthermore that will stage my cancer at Stage 2B or Stage 3A. Fingers crossed.
Holy moly. I just got up to use the restroom and wheeled over my pump and my face is so flushed from the steroids. Either that or I'm on a super drug, oh yeah, I am, it's called Jessica Berman. Winning!! Pia has just started my benadryl drip. Holy crap. I am slurring my words trying to talk to my mom. Good night. Apparently that much benadryl makes you high and knocks you out. Who knew?!? Winning!!
Here are some of my favorite Charlie Sheen quotes to amuse you while I nap it out. But as you know, I like Charlie don't sleep, I wait. AND furthermore most of the time, and that includes naps, I am an F-18. Anyway... Oh yeah, the man is off his rocker. Seriously. He is delusional and manic but most importantly a genius. He is going to make a fortune off all his tirades. What a wack-a-doo.
What's the cure, medicine?
DUH, WINNING!!
I've got tiger blood man.
I'm on a quest to claim absolute victory on every front.
You make a choice to win, and you win.
I'm bi-winning, I win here and I win there.
WINNING!!
We are a GO for Chemo today. I should be jumping for joy (REALLY!?!?!?) but I'm not. They are preparing my medications now except that it is for the higher dose. Before I even got here Dr. McAndrew prepared the order for the higher dose to be administered every three weeks. Pia informed me when I got here and was drawing my blood. Sometimes the communication with my oncology team isn't so great. I thought the idea was to check my blood first then make the decision but not so. I'm being switched to triple dose. Duh, winning!! Pia has told me that because I am switching to the higher dose I will have more pre-meds and will be at Tower all day for the infusion. Niiiiice.
On a side note, I am pissed that "they" (doctors and researchers) group stage 3 cancer with stage 4 cancer. That means I don't qualify for Dr. Guiliano's new study that supports not taking all lymph nodes during a lumpectomy with "early stage" cancers (i.e. Stage 0, 1 and 2). As I sat in the waiting room here at Tower I read a brochure from the "Cancer Support Community" that grouped Stage 3 with Stage 4 AND recurrent AND metastatic breast cancer together. Now, that really pisses me the fuck off. Isn't Stage 3 not considered terminal cancer? It's still only in a few lymph nodes, I am hoping that after my surgery Dr. Giuiliano will tell me that only a few nodes were positive and therefore he didn't have to take all 17 nodes out AND furthermore that will stage my cancer at Stage 2B or Stage 3A. Fingers crossed.
Holy moly. I just got up to use the restroom and wheeled over my pump and my face is so flushed from the steroids. Either that or I'm on a super drug, oh yeah, I am, it's called Jessica Berman. Winning!! Pia has just started my benadryl drip. Holy crap. I am slurring my words trying to talk to my mom. Good night. Apparently that much benadryl makes you high and knocks you out. Who knew?!? Winning!!
Here are some of my favorite Charlie Sheen quotes to amuse you while I nap it out. But as you know, I like Charlie don't sleep, I wait. AND furthermore most of the time, and that includes naps, I am an F-18. Anyway... Oh yeah, the man is off his rocker. Seriously. He is delusional and manic but most importantly a genius. He is going to make a fortune off all his tirades. What a wack-a-doo.
What's the cure, medicine?
DUH, WINNING!!
I've got tiger blood man.
I'm on a quest to claim absolute victory on every front.
You make a choice to win, and you win.
I'm bi-winning, I win here and I win there.
WINNING!!
Sunday, March 6, 2011
Bon Appétit
Just got back from the farmer's market and was starving...so I used my new best friend the Vitamix to make me the following green smoothie for lunch:
Pea Shoots
Dinosaur Kale
Cucumber
Beet
Raw Almond Butter
Almond Milk
Ground Flax Seed
Mangosteen juice
Broccoli Sprouts
Blueberries
Strawberries
Glutamine Powder
Raw Meal Vegan Protein
Stevia to taste
Pea Shoots
Dinosaur Kale
Cucumber
Beet
Raw Almond Butter
Almond Milk
Ground Flax Seed
Mangosteen juice
Broccoli Sprouts
Blueberries
Strawberries
Glutamine Powder
Raw Meal Vegan Protein
Stevia to taste
Saturday, March 5, 2011
My Decision
So what happened this week? Oh so many things...but the biggest thing that has happened is that I've decided until further notice that I will not be getting a prophylactic double mastectomy and resulting breast reconstruction. I will have my lumpectomy and radiation and then my reduction and lift.
I have two issues - The first is I still have to learn whether or not I can have the reduction at the same time as the lumpectomy or is it better to wait until after radiation (which shrinks the tissue and complicates healing; and if I do it at the same time Dr. McAndrew has said I will most likely require a slight revision at some point). The second is if I don't get clear margins after the lumpectomy then I will have to have a mastectomy regardless anyway and the whole decision process will be moot.
There is so much detail into how and why I've made this initial decision which I will divulge at another time but in a nutshell, the way I, the novice, am looking at it is:
1) I am not a gene carrier;
2) I feel it was a fluke of infertility drugs that caused my cancer (perhaps I had some predisposition, albeit not genetic, towards cancer and the pregnancies and fertility drugs just amplified it into overdrive and catapulted the cancer to grow so aggressively. The timing fits according to the doctors I've seen, they feel my tumor has been growing for at least 3 years, I had my first miscarriage in 2007 then in 2008 did the fertility drugs to stimulate 13 follicles and grow 11 embryos that then resulted in the twins, then a break while breastfeeding Abby, then the pregnancy with Leo);
3) Double mastectomy will not completely eradicate the chance that the disease will return (it is 90% effective but it is impossible for a surgeon to remove all breast tissue;
4) I will be closely monitored to detect recurrence and a double mastectomy won't change that;
5) I will be taking tamoxifen for 5 years to prevent recurrence;
6) Because I naturally have large breasts it complicates my reconstruction. Dr. Orringer said that the process will be more intense and more difficult. Breast reconstruction is a very involved process; there is the mastectomy first, the reconstruction is started at the same time for best results which means expanders are placed under the skin to stretch out the skin and tissue (that can take 3-6 months), then you have to have another surgery to get implants, then you have to go back again to create nipples and areolas, then you made need adjustments, then you may need to replace the implants as scar tissue builds up around the implants (and this is especially true for radiated tissue), and then, and then, and then...NO, and then!!! (That's a reference to Dude, where's my car FYI...)
Anyway, that's kind of where I'm at for the moment. I still have a million, zillion questions that I will ask Dr. Guiliano and Dr. McAndrew and the rest of the plastic surgeons that I am meeting with in the coming weeks. But that's my two cents.
I have two issues - The first is I still have to learn whether or not I can have the reduction at the same time as the lumpectomy or is it better to wait until after radiation (which shrinks the tissue and complicates healing; and if I do it at the same time Dr. McAndrew has said I will most likely require a slight revision at some point). The second is if I don't get clear margins after the lumpectomy then I will have to have a mastectomy regardless anyway and the whole decision process will be moot.
There is so much detail into how and why I've made this initial decision which I will divulge at another time but in a nutshell, the way I, the novice, am looking at it is:
1) I am not a gene carrier;
2) I feel it was a fluke of infertility drugs that caused my cancer (perhaps I had some predisposition, albeit not genetic, towards cancer and the pregnancies and fertility drugs just amplified it into overdrive and catapulted the cancer to grow so aggressively. The timing fits according to the doctors I've seen, they feel my tumor has been growing for at least 3 years, I had my first miscarriage in 2007 then in 2008 did the fertility drugs to stimulate 13 follicles and grow 11 embryos that then resulted in the twins, then a break while breastfeeding Abby, then the pregnancy with Leo);
3) Double mastectomy will not completely eradicate the chance that the disease will return (it is 90% effective but it is impossible for a surgeon to remove all breast tissue;
4) I will be closely monitored to detect recurrence and a double mastectomy won't change that;
5) I will be taking tamoxifen for 5 years to prevent recurrence;
6) Because I naturally have large breasts it complicates my reconstruction. Dr. Orringer said that the process will be more intense and more difficult. Breast reconstruction is a very involved process; there is the mastectomy first, the reconstruction is started at the same time for best results which means expanders are placed under the skin to stretch out the skin and tissue (that can take 3-6 months), then you have to have another surgery to get implants, then you have to go back again to create nipples and areolas, then you made need adjustments, then you may need to replace the implants as scar tissue builds up around the implants (and this is especially true for radiated tissue), and then, and then, and then...NO, and then!!! (That's a reference to Dude, where's my car FYI...)
Anyway, that's kind of where I'm at for the moment. I still have a million, zillion questions that I will ask Dr. Guiliano and Dr. McAndrew and the rest of the plastic surgeons that I am meeting with in the coming weeks. But that's my two cents.
Thursday, March 3, 2011
Wowieeeee!
Today's ballet class was particularly difficult...we had a sub and she was rough. I hope I can walk tomorrow. Anyway, here's a video of me in ballet class. I am really, really good...I have to say I very much look forward to class. I hope I can keep going after they up my Chemo dose next week. Fingers crossed!
Wednesday, March 2, 2011
Oy.
What a day. Woke up with Abby, juiced some veggies with Abby and had breakfast. Sent her to Bee Planet with Agnes. Cuddled with Leo (delicious). Went to Pilates. Scarfed down a protein bar and a packet of raisins. Went to acupuncture. Got my needles then had my tuina massage. No nap. Then went straight to meet my first plastic surgeon, Dr. Jay Orringer.
Information overload!! Will report my findings later when my head stops spinning...
Information overload!! Will report my findings later when my head stops spinning...
Tuesday, March 1, 2011
Some thoughts
I am calling Dr. McAndrew today. I want to know why they don't just give me the Neulasta shot right now to prepare for next week. I read Sharon's blog last night to refresh my memory and she got the shot after her 7th cycle and she was getting the weekly treatments so what the heck?!?! Although she did make it to her 7th cycle without incident, she had some kidney toxicity after her 6th cycle. It appears I don't have as strong of bone marrow or something (if that even makes sense). I don't really want the shot but am just confused why it wasn't even brought up as an option...
I love and hate the Internet at the same time. It has so much useful information right at your fingertips but it also has very wrong and hurtful information as well. It's just like anything else. You have to take the good with the bad. Researching last night about what having a low white blood cell count means has me concerned that I could get sick and have more serious complications. Here's what I learned.
This is the 411 on the composition of your B L O O D.... Ahh ahhh ahhh (said by the Count from Sesame Street) from the Mayo Clinic and chemocare.com.
The biggest issue with low WBC is that you may NOT have the usual signs and symptoms when developing an infection such as redness, swelling, cough, nasal drainage (from a sinus or a respiratory infection), pus formation (at the site of an injury or incision) (Ew!). That means I need to be on high alert to any change in how I feel and take precautions.
Anyway, I am instructed to pay attention to my body and inform my doctor if I experience any of the following symptoms (it's a hypochondriac's dream):
The Mayo clinic suggests that I can cope with low blood cell counts by doing the following:
Eat a balanced diet. Your body needs all the vitamins and nutrients it can get to heal itself during and after your treatment. Eat plenty of fruits and vegetables. If treatment complications make eating difficult — for example, if you experience nausea and vomiting or mouth sores — experiment to find foods you can tolerate.
Avoid injury. Many everyday activities put you at risk of cuts and scrapes. A low platelet count makes even minor abrasions serious. A low white blood cell count can turn a small cut into a starting point for a serious infection. Use an electric shaver rather than a razor to avoid nicks. Ask someone else to cut up food in the kitchen. Be gentle when brushing your teeth and blowing your nose.
Avoid germs. It's impossible to avoid all germs, but avoid unnecessary exposure when you can. Wash your hands frequently. Avoid people who are sick and stay away from crowds. Have someone else clean the litter box, bird cage or fish tank. Don't eat raw meat or eggs.
Rest. If you feel tired, stop and rest. Your body is working hard to fight the cancer cells and heal the healthy cells damaged by your treatment. Don't feel guilty about taking time for yourself and asking others to help you. Plan your most important activities for the time of day when you feel most energetic.
What a joke. Dr. McAndrew JUST told me that anything I do won't change the outcome of my blood count. But they are still good suggestions. Now if I could only make my body sleep when I want to.
I do know that I CANNOT be around anyone who is sick, is getting "over" being sick or "feels like they may be coming down with something"... Chemocare went so far as to say that I should shield myself away from young children, diaper changing and/or pet care. Wow, that sure isn't going to happen in this household!!
It does beg the question though of whether I should be taking Abby to these toddler classes or not. Kristen told me last week not to go to Miss Nancy's class and be exposed to the germfest. I hadn't even thought of that even though both the nurses at Tower and Dr. Gordon have told me numerous times. I was just feeling guilty that I haven't been to Miss Nancy's class with Abby. Talk about a thick head. Apparently I only hear what I want to hear. That must be where Abby gets it from! Pfffft. And I just finished ranting and raving a couple of posts ago about the moms who bring their kids to class with runny noses and say "it's just allergies" or they had a cold. NO!!! They don't get allergies younger than two and if they "HAD" a cold and were over the cold there wouldn't be the runny nose. Ugh. Ugh. Ugh. Makes it unsafe for Abby to be in class and for me to even be there. I need to remember my own rantings and keep myself safe. No sick kids. No classes. No crowds. Reduce exposure to germs.
WASH YOUR HANDS. WASH YOUR HANDS. WASH YOUR HANDS!!!
I love and hate the Internet at the same time. It has so much useful information right at your fingertips but it also has very wrong and hurtful information as well. It's just like anything else. You have to take the good with the bad. Researching last night about what having a low white blood cell count means has me concerned that I could get sick and have more serious complications. Here's what I learned.
This is the 411 on the composition of your B L O O D.... Ahh ahhh ahhh (said by the Count from Sesame Street) from the Mayo Clinic and chemocare.com.
- White blood cells. These cells help your body fight infection. A low white blood cell count (leukopenia) leaves your body more open to infection. And if an infection does develop, your body may be unable to fight it off.
- Red blood cells. Red blood cells carry oxygen throughout your body. Your red blood cells' ability to carry oxygen is measured by the amount of hemoglobin in your blood. If your level of hemoglobin is low, you're anemic and your body works much harder to supply oxygen to your tissues. This can make you feel fatigued and short of breath.
- Platelets. Platelets help your blood to clot. A low platelet count (thrombocytopenia) means your body can't stop itself from bleeding.
The most serious complication of low blood cell counts include...
- Infection. With a low white blood cell count and, in particular, a low level of neutrophils (neutropenia), a type of white blood cell that fights infection, you're at higher risk of developing an infection. And if you develop an infection when you have a low white blood cell count, your body can't protect itself. Even a mild infection can delay your chemotherapy treatment, since your doctor may wait until your infection is cleared and your blood counts go back up before you continue. At times, your doctor may choose to lower the dose of chemotherapy you receive in order to decrease your chance of developing seriously low white blood cell counts. Your doctor may also recommend medication to increase your body's production of white blood cells.
- Anemia. A low red blood cell count is anemia. The most common symptoms of anemia are fatigue and shortness of breath. In some cases fatigue becomes so severe that you must temporarily halt your treatment or reduce the dose you receive. Anemia can be relieved with a blood transfusion or with medication to increase your body's production of red blood cells.
- Bleeding. Low numbers of platelets in your blood can cause bleeding. You might bleed excessively from a small cut or bleed spontaneously from your nose or gums. A low platelet count can delay your treatment. You may have to wait until your platelet levels go up in order to continue with chemotherapy or to have surgery.
The biggest issue with low WBC is that you may NOT have the usual signs and symptoms when developing an infection such as redness, swelling, cough, nasal drainage (from a sinus or a respiratory infection), pus formation (at the site of an injury or incision) (Ew!). That means I need to be on high alert to any change in how I feel and take precautions.
Anyway, I am instructed to pay attention to my body and inform my doctor if I experience any of the following symptoms (it's a hypochondriac's dream):
The Mayo clinic suggests that I can cope with low blood cell counts by doing the following:
What a joke. Dr. McAndrew JUST told me that anything I do won't change the outcome of my blood count. But they are still good suggestions. Now if I could only make my body sleep when I want to.
I do know that I CANNOT be around anyone who is sick, is getting "over" being sick or "feels like they may be coming down with something"... Chemocare went so far as to say that I should shield myself away from young children, diaper changing and/or pet care. Wow, that sure isn't going to happen in this household!!
It does beg the question though of whether I should be taking Abby to these toddler classes or not. Kristen told me last week not to go to Miss Nancy's class and be exposed to the germfest. I hadn't even thought of that even though both the nurses at Tower and Dr. Gordon have told me numerous times. I was just feeling guilty that I haven't been to Miss Nancy's class with Abby. Talk about a thick head. Apparently I only hear what I want to hear. That must be where Abby gets it from! Pfffft. And I just finished ranting and raving a couple of posts ago about the moms who bring their kids to class with runny noses and say "it's just allergies" or they had a cold. NO!!! They don't get allergies younger than two and if they "HAD" a cold and were over the cold there wouldn't be the runny nose. Ugh. Ugh. Ugh. Makes it unsafe for Abby to be in class and for me to even be there. I need to remember my own rantings and keep myself safe. No sick kids. No classes. No crowds. Reduce exposure to germs.
WASH YOUR HANDS. WASH YOUR HANDS. WASH YOUR HANDS!!!
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