After all the trauma of being rejected, I just got word that my next reconstruction surgery has been approved after all!!!!!
Apparently, there is no straight foward way to do these things. The method by which it was finally approved and with my own surgeon was more than a bit convoluted. That's OK. It happened. :D I am going to ask how much they plan to pay in advance after the "only paying for one breast when I had 2 removed" fiasco of the last few months. It took about 3 months, maybe more, to get them to cough up the full amount for my exchange surgery (when the actual implants were placed).
For my scrappy friends, this means a 99% chance I will not be at CHA-S. My surgery will be just a few days before that. I'll have to just be there in spirit... and in paper and photos. LOL. I'll have some layouts and photos in various places on the exhibit floor. I am so very sorry that I am going to miss seeing Stef, Dana, and Genine (no blog that I know of). These three are my fellow young breast cancer scrap industry related friends. We've been through the mill together. Dana set us all on the way as she did this a full year before me. Genine and I went through a good part of treatment around the same time. Stef followed me by several months. We are all finished with the most active treatment now and all of us, except me, will be in Chicago for a weekend in July. You kind find lots of Stef's work in PaperCrafts Magazine, Dana has her own paper line and Genine, until recently, had her own lss. She and I will have art therapy journals in an upcoming book from Sharon Soneff next year. :)
It really hasn't sunk in yet. I can't believe it. So tired of the insurance company games.
Monday, June 25, 2007
Sunday, June 24, 2007
Let it roll
It's been one of those weeks all sorts of things did not go as planned.
Once upon a time, I was a type A personality, with everything that goes with it. I lived my life with lists, always following the clock, and with high expectations. There was a point in time, I think it came sometime after my residency, when I made a conscious decision not to live my life that way. This may be shocking for some, but it was then that I gave up wearing a watch. {I can hear the gasps from the type As out there now! LOL}
Just like purses are to me now, a watch was a very necessary fashion accessory. Of course, it was more than a fashion accessory, it was how I lived my life. Always in a rush to finish the task at hand and get onto the next.
Even worse than giving up my watch, sometime after I finished residency and did not need to get up at 5 am on a regular basis, I gave up my alarm clock. I actually applied something I learned in medical school but never had the chance to try. If you get enough sleep, you will wake up on time. It happens each and everyday. It actually still amazes me.
So, now I'm going to bring back this not so amazing conversation with myself to cancer. You thought it was going to be a non-cancer post, didn't you? LOL. Is it ever? I learned a lesson this week. We had all sorts of things go wrong this week. I was trying to meet a friend in Penn Station and missed her by probably 10-15 minutes due to a late train and cell phones that don't work in tunnels. It rained that whole morning, ruining our original plans (we made due with a morning at the American Girl Place... a bonus for Miss Rachel). Rachel and I were supposed to drive to MD to visit a college friend and her dds on Thursday. We were also going to visit the Great American Scrapbook Convention in VA with them (they are new scrappers), and we were going to scrap (reminds me that I was going to work on my Boxer stuff for July- still need to do that!). None of that happened because my alternator died a sudden a death. My dh went to install my new amazing Sony dye sub photo printer only to learn that it was broken before we ever used it. It will be replaced, but I am printer-less (my addicted scrapper/photography fiend friends will understand that calamity). It's been one thing after another the last few days. Nothing is going my way.
But it's OK. And that's the lesson. In my post-active-treatment life (though taking a pill everyday is still treatment, but it's certainly not as violent a treatment as chemo or surgery), the little things matter less. In another lifetime, I would be angry, frustrated, ticked off, and maybe even sad. But I'm not. I'm OK. It's not a conscious thing. I didn't have to decide that I was going to let these things just roll off my back. They just did. All on their own.
Not sure if this really is a blog-worthy entry, but that's OK too. :P I'm going with it.
Once upon a time, I was a type A personality, with everything that goes with it. I lived my life with lists, always following the clock, and with high expectations. There was a point in time, I think it came sometime after my residency, when I made a conscious decision not to live my life that way. This may be shocking for some, but it was then that I gave up wearing a watch. {I can hear the gasps from the type As out there now! LOL}
Just like purses are to me now, a watch was a very necessary fashion accessory. Of course, it was more than a fashion accessory, it was how I lived my life. Always in a rush to finish the task at hand and get onto the next.
Even worse than giving up my watch, sometime after I finished residency and did not need to get up at 5 am on a regular basis, I gave up my alarm clock. I actually applied something I learned in medical school but never had the chance to try. If you get enough sleep, you will wake up on time. It happens each and everyday. It actually still amazes me.
So, now I'm going to bring back this not so amazing conversation with myself to cancer. You thought it was going to be a non-cancer post, didn't you? LOL. Is it ever? I learned a lesson this week. We had all sorts of things go wrong this week. I was trying to meet a friend in Penn Station and missed her by probably 10-15 minutes due to a late train and cell phones that don't work in tunnels. It rained that whole morning, ruining our original plans (we made due with a morning at the American Girl Place... a bonus for Miss Rachel). Rachel and I were supposed to drive to MD to visit a college friend and her dds on Thursday. We were also going to visit the Great American Scrapbook Convention in VA with them (they are new scrappers), and we were going to scrap (reminds me that I was going to work on my Boxer stuff for July- still need to do that!). None of that happened because my alternator died a sudden a death. My dh went to install my new amazing Sony dye sub photo printer only to learn that it was broken before we ever used it. It will be replaced, but I am printer-less (my addicted scrapper/photography fiend friends will understand that calamity). It's been one thing after another the last few days. Nothing is going my way.
But it's OK. And that's the lesson. In my post-active-treatment life (though taking a pill everyday is still treatment, but it's certainly not as violent a treatment as chemo or surgery), the little things matter less. In another lifetime, I would be angry, frustrated, ticked off, and maybe even sad. But I'm not. I'm OK. It's not a conscious thing. I didn't have to decide that I was going to let these things just roll off my back. They just did. All on their own.
Not sure if this really is a blog-worthy entry, but that's OK too. :P I'm going with it.
Monday, June 18, 2007
A little less serious sharing :)
I've been sneaking in a little scrapping in the mornings over the last week. It's good therapy. :) This is one I did early this morning, when I came home from work. I still love these pictures. They were taken on the towpath of the canal. It's become our Halloween tradition to go out there and take pictures after school. The journaling talks a little about the dress. Originally, when Rachel decided she wanted to be a colonial girl (the American Girl Felicity, to be exact), I thought it would be a great summer project to make the dress ourselves. Then, chemo got in the way and the plans were put aside. I eventually found a talented seamstress on EBAY who does costumes for reeanactment events and our problems were solved. She made a dress for Rachel's doll too, but it did not arrive in time for Halloween.
Rachel's current dance school does not do formal portraits. Not really a problem at all, as I had stopped buying anything other than the group photos for the most part. I've been either taking them on my own or having them done. There were so many good ones to pick from this year. It was so hard to choose. These are two of my favorites. The bottom one is from her hip-hop class. Most cost efficient costume we've ever had in this house!
Rachel's current dance school does not do formal portraits. Not really a problem at all, as I had stopped buying anything other than the group photos for the most part. I've been either taking them on my own or having them done. There were so many good ones to pick from this year. It was so hard to choose. These are two of my favorites. The bottom one is from her hip-hop class. Most cost efficient costume we've ever had in this house!
Sunday, June 17, 2007
A clearer head
This whole post might be TMI for some.
You've been warned.
Stop reading and go surf somewhere else if you are not interested.
Having slept on this, I've decided that maybe this insurance company denial is a good thing.
It's making me re-think the whole concept of this surgery.
The reality is that "the girls" look just fine under clothing. At least I think they do. No one has said otherwise yet. Wonder if anyone would tell me if they didn't? It would be nice, however, if I could fill out a bra in a normal store. That was part of why I wanted to continue the reconstruction process. That, and looking normal when I glance in the mirror.
Maybe I just need to get more adventurous in the bra trying on department. And, before anyone starts suggesting, I have already been to Victoria's Secret with their completely clueless and frightened salesgirls and I've been to the new store (new to me) in the mall that's attached to Chico's, where they had so many bras I wanted to buy (none fit) and at least the salesgirl was not frightened (don't think she exactly understood, but at least she didn't run away scared). I measure out as a B or a C cup, but despite the illusion, the shape really is not normal. There are very round silicone implants that make up the real shape. Every B cup I've tried on has looked silly because the cup is just too big in the middle. I could get the special prosthetic devices (thin sheet of silicone) that look like they have nipples and fill out the cup, but then why did I have reconstruction? I could have just left everything alone, been concave and used prosthetics. No thanks. I think I'm going to try an A cup the next time I go into one of those stores with all the cute bras. And, I am going back to the specialty shop, Sylene's. The place where they actually have fitters trained in fitting women with reconstruction. I finally put on the bra I bought there... lo and behold.. it fits nicely. It's even kind of cute. Just a little too high cut. And since my insurance company that won't pay for my plastic surgeon of choice will actually pay for 4 bras each year (a perk of having had a mastectomy or two), I might as well go back and get 2 more to fill the quota for the year. And, one of these days, but not this summer, I will make a trip to visit my mom's cousin Carol. She retired from being a college professor and runs my great aunt's lingerie shop, Ruth's in RI. If you are in RI and need a bra, esp if you have any special needs, it's the place to go.
Now, I admit I have no interest in wearing a bra ALL the time. It's just not necessary, though I do worry about the weight of the silicone causing further sagging if I don't wear one. Then again, that would be perfectly natural for a woman my age. :P LOL. Still, the bigger issue is looking normal. Not that there are huge numbers of people that are ever going to see my Barbie boobs. But, it's for me. Obviously it is solely for me. It's the idea that if I were to change my clothing in a locker room, I wouldn't look glaringly like a Frankenstein version of Barbie since I otherwise look nothing like Barbie and no Barbie I've seen comes with horizontal scars across her chest.. but I bet someone will make one now that I've said that. It's so when I get dressed or take a shower at home and I catch a glimpse of myself in a mirror, I can forget.
Anyway, I took a look at this website (fixed link) . If you are very curious, take a look at the areola reconstruction photos. I'm thinking something like this just might do the trick. It creates an illusion with no permanent headlight issues (you did realize that there is no "off and on" when you have completely fake nipples, right?). I'm thinking this might be my answer.
I do also think that I need to take my time and not jump into a decision. It's not like chemo (which I delayed). It's not even like having my ooph (salpingo-oophorectomy = tube and ovary removal), which I also put off for a few months (the gyn wanted to do it right away, before chemo even.. as most of you know, I waited until after chemo and did it with the bilateral mastectomy). There's just no rush. It would be SOOOOOOOO nice to be done with everything. Reality check reveals that I will never be done with everything. I'll be taking drugs for at least the next 5 years. I'll be in some level of surveillance for the rest of my life. It's just how the cards played out. So, I'm going to try to take a deep breath, relax, and think about it all some more.
You've been warned.
Stop reading and go surf somewhere else if you are not interested.
Having slept on this, I've decided that maybe this insurance company denial is a good thing.
It's making me re-think the whole concept of this surgery.
The reality is that "the girls" look just fine under clothing. At least I think they do. No one has said otherwise yet. Wonder if anyone would tell me if they didn't? It would be nice, however, if I could fill out a bra in a normal store. That was part of why I wanted to continue the reconstruction process. That, and looking normal when I glance in the mirror.
Maybe I just need to get more adventurous in the bra trying on department. And, before anyone starts suggesting, I have already been to Victoria's Secret with their completely clueless and frightened salesgirls and I've been to the new store (new to me) in the mall that's attached to Chico's, where they had so many bras I wanted to buy (none fit) and at least the salesgirl was not frightened (don't think she exactly understood, but at least she didn't run away scared). I measure out as a B or a C cup, but despite the illusion, the shape really is not normal. There are very round silicone implants that make up the real shape. Every B cup I've tried on has looked silly because the cup is just too big in the middle. I could get the special prosthetic devices (thin sheet of silicone) that look like they have nipples and fill out the cup, but then why did I have reconstruction? I could have just left everything alone, been concave and used prosthetics. No thanks. I think I'm going to try an A cup the next time I go into one of those stores with all the cute bras. And, I am going back to the specialty shop, Sylene's. The place where they actually have fitters trained in fitting women with reconstruction. I finally put on the bra I bought there... lo and behold.. it fits nicely. It's even kind of cute. Just a little too high cut. And since my insurance company that won't pay for my plastic surgeon of choice will actually pay for 4 bras each year (a perk of having had a mastectomy or two), I might as well go back and get 2 more to fill the quota for the year. And, one of these days, but not this summer, I will make a trip to visit my mom's cousin Carol. She retired from being a college professor and runs my great aunt's lingerie shop, Ruth's in RI. If you are in RI and need a bra, esp if you have any special needs, it's the place to go.
Now, I admit I have no interest in wearing a bra ALL the time. It's just not necessary, though I do worry about the weight of the silicone causing further sagging if I don't wear one. Then again, that would be perfectly natural for a woman my age. :P LOL. Still, the bigger issue is looking normal. Not that there are huge numbers of people that are ever going to see my Barbie boobs. But, it's for me. Obviously it is solely for me. It's the idea that if I were to change my clothing in a locker room, I wouldn't look glaringly like a Frankenstein version of Barbie since I otherwise look nothing like Barbie and no Barbie I've seen comes with horizontal scars across her chest.. but I bet someone will make one now that I've said that. It's so when I get dressed or take a shower at home and I catch a glimpse of myself in a mirror, I can forget.
Anyway, I took a look at this website (fixed link) . If you are very curious, take a look at the areola reconstruction photos. I'm thinking something like this just might do the trick. It creates an illusion with no permanent headlight issues (you did realize that there is no "off and on" when you have completely fake nipples, right?). I'm thinking this might be my answer.
I do also think that I need to take my time and not jump into a decision. It's not like chemo (which I delayed). It's not even like having my ooph (salpingo-oophorectomy = tube and ovary removal), which I also put off for a few months (the gyn wanted to do it right away, before chemo even.. as most of you know, I waited until after chemo and did it with the bilateral mastectomy). There's just no rush. It would be SOOOOOOOO nice to be done with everything. Reality check reveals that I will never be done with everything. I'll be taking drugs for at least the next 5 years. I'll be in some level of surveillance for the rest of my life. It's just how the cards played out. So, I'm going to try to take a deep breath, relax, and think about it all some more.
Friday, June 15, 2007
From Freedom to Crash and Burn
I spoke too soon.
The insurance company did not get a clue.
Instead, they have issued a "don't pass go, don't collect $200 card." I am so incredibly disappointed. This is part of my reconstruction. It's a multi-phase process. This is the next phase.
All hope is not lost. Just most of it. We are appealing the decision and trying to get approval through another route. However, we've already been told it's extremely unlikely they will reverse the decision.
I am just so sick of the roller coaster. You may remember from my posts last year, I don't like roller coasters. I do not ride them on purpose. I thought this one was over. And now, it may be over.
Yes. I know. I could find a plastic surgeon in network. That might just be what I'll have to do. Once again, it's starting over. More consults, more paperwork, more phone calls. And finding people who've actually been in the OR with these surgeons. I just don't have the energy. I just want it to be over.
And it could be. I can just stop here and not go further with the reconstruction. Initially, that's what I thought I was going to to do. But, then I saw what the completed product, so to speak, looks like. It's real. They look amazingly like the real thing. Dh, of course, points out that they don't actually work and I wouldn't be able to actually feel them anyway. He's right. That's part of why I wasn't sure I was going to do this initially. But, then, when I saw how normal they made artificial breasts look, I changed my mind. I want that too. I want to look normal, even if I am the only one that ever sees them. But, I am tired of fighting the bureaucracy. And honestly, it's not important enough for me to spend the 1000s of dollars it would cost out of pocket. Not that I'm really even in a position to do so considering the months I've been out of work in the last year and the cut in hours once I did go back.
Yeah. There are worse things. A year ago tonight, I was having dinner with my dd and my sister's family. It was my first dinner after my first chemo session. The fear of the unknown was resting heavily on my shoulders. I still had my original breasts then, so it might have been the weight of my bra too :) Hard for me to imagine that anymore. Anyway, I'm NED (no evidence of disease), I have my family, my friends, and that's all much more important. Might sound a bit Pollyanna, but I have to repeat these things for myself sometimes. :)
The insurance company did not get a clue.
Instead, they have issued a "don't pass go, don't collect $200 card." I am so incredibly disappointed. This is part of my reconstruction. It's a multi-phase process. This is the next phase.
All hope is not lost. Just most of it. We are appealing the decision and trying to get approval through another route. However, we've already been told it's extremely unlikely they will reverse the decision.
I am just so sick of the roller coaster. You may remember from my posts last year, I don't like roller coasters. I do not ride them on purpose. I thought this one was over. And now, it may be over.
Yes. I know. I could find a plastic surgeon in network. That might just be what I'll have to do. Once again, it's starting over. More consults, more paperwork, more phone calls. And finding people who've actually been in the OR with these surgeons. I just don't have the energy. I just want it to be over.
And it could be. I can just stop here and not go further with the reconstruction. Initially, that's what I thought I was going to to do. But, then I saw what the completed product, so to speak, looks like. It's real. They look amazingly like the real thing. Dh, of course, points out that they don't actually work and I wouldn't be able to actually feel them anyway. He's right. That's part of why I wasn't sure I was going to do this initially. But, then, when I saw how normal they made artificial breasts look, I changed my mind. I want that too. I want to look normal, even if I am the only one that ever sees them. But, I am tired of fighting the bureaucracy. And honestly, it's not important enough for me to spend the 1000s of dollars it would cost out of pocket. Not that I'm really even in a position to do so considering the months I've been out of work in the last year and the cut in hours once I did go back.
Yeah. There are worse things. A year ago tonight, I was having dinner with my dd and my sister's family. It was my first dinner after my first chemo session. The fear of the unknown was resting heavily on my shoulders. I still had my original breasts then, so it might have been the weight of my bra too :) Hard for me to imagine that anymore. Anyway, I'm NED (no evidence of disease), I have my family, my friends, and that's all much more important. Might sound a bit Pollyanna, but I have to repeat these things for myself sometimes. :)
Tuesday, June 12, 2007
Freedom!
Saw my plastic surgeon yesterday.
I still get a kick out of the fact that I have a plastic surgeon. I did once consider becoming one myself. I once cut sutures during a very cool facial reconstruction surgery during a short surgical elective as a medical student. They were reconstructing the face of a little boy who had a severe dog bite injury. The surgery was amazing and I easily imagined myself doing that sort of thing. I also love operating with the minute detail and neatness that a plastic surgeon should have... but no one really gets to see my work because most of it is inside. :) LOL
Anyway, I had a short list of questions for him and I loved the answers. :) Number one was about my restrictions- they've been lifted. Number two was about living 24/7 in a compressive high impact sports bra.
Yes.
You got it.
I am free!!!!
Finally, I am allowed to wear any bra in any color or style my little heart desires!!!!!
Or, better yet, no bra at all. :)
I admit I came home from my appointment and took off the sports bra. :o
The concept of shopping for any bra I want after all these years is, in all honesty, overwhelming. I was a C cup by the time I was in 6th grade and was wearing a 32D by sometime the next year. I no longer have that small a band size, but I'm now a B. I've spent years admiring all the cute colors and styles that came in B cups. What I want to know though, is when did Victoria's Secret become so darn expensive??? LOL. Years ago, I tried to shop there, but 38DD was not really a size they carried in the store and if they did have one, it did not have sufficient support. I went there a few weeks ago, before I was allowed out of the sports bra... just to take a peek. Those bras cost almost as much as my old multimillion dollar Wacoals.
As overwhelming as it is, it is much better than being overwhelmed by chemotherapy.
So, what's next? If you don't want to know, stop reading.
We discussed the next phase. Assuming the insurance company gets a clue and agrees to pay like we were originally promised, I get nipples. He makes them out of my own skin. No skin transplant technique like some do. He uses the skin that is already there. I understand that they are quite huge (he used the term protuberant) for a while and then they shrink down. I guess it means I should get bras for our cruise in August because the headlights will be on all the time! :o Then, about 4 months later, I get to do something else I never pictured myself doing. I get tattoos. That's how they get color and how the areola is created. I bet you didn't even think about that part. Just like how most people don't realize that getting cuter boobs in a situation like this is not quite the same as having a reduction, lift or augmentation. After a mastectomy, there's no feeling. When I have the nipples created, I will not need anesthesia. No general. I can have sedation if I choose, but it's not necessary. I'm thinking of doing it without sedation so I can drive myself (though my sister has offered to take a day off and I suspect dh would offer to do the same).
So, that's the latest. A little more information than some of you probably wanted to know. :P
I still get a kick out of the fact that I have a plastic surgeon. I did once consider becoming one myself. I once cut sutures during a very cool facial reconstruction surgery during a short surgical elective as a medical student. They were reconstructing the face of a little boy who had a severe dog bite injury. The surgery was amazing and I easily imagined myself doing that sort of thing. I also love operating with the minute detail and neatness that a plastic surgeon should have... but no one really gets to see my work because most of it is inside. :) LOL
Anyway, I had a short list of questions for him and I loved the answers. :) Number one was about my restrictions- they've been lifted. Number two was about living 24/7 in a compressive high impact sports bra.
Yes.
You got it.
I am free!!!!
Finally, I am allowed to wear any bra in any color or style my little heart desires!!!!!
Or, better yet, no bra at all. :)
I admit I came home from my appointment and took off the sports bra. :o
The concept of shopping for any bra I want after all these years is, in all honesty, overwhelming. I was a C cup by the time I was in 6th grade and was wearing a 32D by sometime the next year. I no longer have that small a band size, but I'm now a B. I've spent years admiring all the cute colors and styles that came in B cups. What I want to know though, is when did Victoria's Secret become so darn expensive??? LOL. Years ago, I tried to shop there, but 38DD was not really a size they carried in the store and if they did have one, it did not have sufficient support. I went there a few weeks ago, before I was allowed out of the sports bra... just to take a peek. Those bras cost almost as much as my old multimillion dollar Wacoals.
As overwhelming as it is, it is much better than being overwhelmed by chemotherapy.
So, what's next? If you don't want to know, stop reading.
We discussed the next phase. Assuming the insurance company gets a clue and agrees to pay like we were originally promised, I get nipples. He makes them out of my own skin. No skin transplant technique like some do. He uses the skin that is already there. I understand that they are quite huge (he used the term protuberant) for a while and then they shrink down. I guess it means I should get bras for our cruise in August because the headlights will be on all the time! :o Then, about 4 months later, I get to do something else I never pictured myself doing. I get tattoos. That's how they get color and how the areola is created. I bet you didn't even think about that part. Just like how most people don't realize that getting cuter boobs in a situation like this is not quite the same as having a reduction, lift or augmentation. After a mastectomy, there's no feeling. When I have the nipples created, I will not need anesthesia. No general. I can have sedation if I choose, but it's not necessary. I'm thinking of doing it without sedation so I can drive myself (though my sister has offered to take a day off and I suspect dh would offer to do the same).
So, that's the latest. A little more information than some of you probably wanted to know. :P
Wednesday, June 06, 2007
Jessica's Bas Mitzvah
It seems that I can only post 5 photos in one entry, so here's a glimpse from the party on Saturday afternoon.
The first one is the incredibly gorgeous Jessica dancing with her dad. She did a wonderful job with the service that morning. I must say that Rachel was particularly impressed with all the work and studying that went into preparing for the service. This was the first actual Bar or Bas Mitzvah that Rachel has ever attended.
The first one is the incredibly gorgeous Jessica dancing with her dad. She did a wonderful job with the service that morning. I must say that Rachel was particularly impressed with all the work and studying that went into preparing for the service. This was the first actual Bar or Bas Mitzvah that Rachel has ever attended.
Across your screen... My cousin Sally who flew in from CA for the occassion. For my breast cancer buds, she is 13 years out from diagnosis, NED, living life, and is quite happy to be a posterchild for young survivorship! :) Next are cousins Elliot and Donna, the parents of the incredibly gorgeous Jessica. And, by now, you all know me. :P I had to show this one for those of you who listened to me complain about shopping for a dress. This is certainly something I never could have worn prior to Sept 12, 2006. Looking at the photos (I only have 2 with me in them, a hazard of being behind the lens), I'm not sure I really even fill out the top of it. Such a bizarre concept when I know that before Sept 12, I couldn't have worn it at all because my top would not have fit into such a small thing!! And yes, I did take the ubiquitous sports bra off for the day.
Below is Rachel and her great-great uncle Sheldon. He's Jess' paternal granddad. He had his 90th bday not too many years ago. All the children adore him. He called me pretty much every single week throughout chemo and after surgery.
And, if you look closely, you'll see that Rachel matches the tableclothes. This was not planned! We learned about it when we arrived. LOL! Some of my scrapping friends know that it also matches some Scribble Scrabble papers. Also not planned. My dad and Arlene bought this dress for Rachel and one in blue for Arlene's granddaughter when they had a sleepover earlier this spring. Rachel fell in love with the dress (it is very Rachel) and because Rachel loved it, Brooke loved it too. :) Brooke is a little younger and likes to do whatever Rachel does. :) It's cute.
I couldn't resist showing one of these of my nephew. Yes, I said one of these. I have a few photos of Lucas looking like this. He was not too found of the volume of the music at first.
And last, but not least, is dh dancing with my niece, Hannah. You may remember her from a photo I posted this summer, Two Bald Girls with Earrings. You will note that I have significantly more hair than Hannah does now. :P Good thing she's not old enough to know I was competing with her for hair and I WON! She is still the cuter one though. :)
Spring Dance Recital
While the card reader is still hooked up to my computer, I thought I'd share some photos from the madness of the weekend. We had a Bas Mitzvah (next post) and Rachel's Spring Dance Performance. Nope. Not a recital. It's a little lower key than a recital, so they call it a performance instead. I don't have any good shots from her hip-hop performance. She wore a black leotard and jeans for that one. Not very different than how she appears most days of the week. LOL.
Of course, it was a brilliant performance. They danced in a short ballet. For once, they were the "big girls," as the ballet included all the pre-ballet (kindergarten) through ballet 4 (Rachel's level which is prep for pointe). We will miss this little group of 5 next year. She is staying at the same school, but the group won't be the same. One of the girls is no longer enjoying the class (at 3 days a week for just ballet, you need to love it!) and another is moving to Singapore. Plus, there are a good number of children moving up from level 3, so it will be a larger class instead of the very intimate experience it was this year.
Wednesday, May 30, 2007
Monday, May 28, 2007
Long time, no blogging
I did not realize how long it had been! And I've even been tagged in the meanwhile. I'll get to that one later.
So, what's been going on?
It feels like nothing is going on, especially compared to the trauma at last year at this time. May and early June are always busy times with the end of the school year activities. Rachel's had 2 flute recitals, a band concert, Family Day (another day of school performances and a carnival), dance rehearsals in addition to the 3 day a week ballet classes, and has a few more rehearsals and the spring dance performance next weekend. I've been busy running to all those events. Every once in a while, in the middle of the hubbub, I remember what it was like to be in the midst of all that with the feeling of impending doom hanging over my head. Last year, the goal was to get through all of these things before I started chemotherapy. All our usual fun, after the craziness, Mommy/daughter plans for June were cancelled. This year, we are talking about going to the shore, seeing what Broadway show we can catch by getting tickets at the TKTS booth, spending a day at the Museum of Natural History, visiting friends, etc. :)
In the meantime, I've had a few routine doctor's appointments.
I thoroughly miss the days when a check up was just something totally routine. Everything is much more complicated now. I left my physical at my internists office with a "to do" list that was incredibly long. I've become one of those patients with a complicated problem list. One of those multiple medical problem people. I feel like Rip Van Winkle, like I went to bed one day and woke up 50 years later. I'm supposed to see an allergist (no one else will do my vaccinations because of my allergy history), a cardiologist to consider the possibility of having a stress test (!!!), a gastroenterologist for a colonoscopy (planning to put this one off a tiny bit longer), and a dermatologist (made that appointment). This is in addition to the previously made appointments with my medical oncologist, gynecologic oncologist, breast surgeon (done) and plastic surgeon. The only positive is that after my co-pays (which are higher than ever), I should hit my deductible very soon, if we have not already.
Then, I got my blood test results back. I suspect that nothing is ever easy, even on this road out of Cancer-ville. I thought life was going back to normal. Albeit, a new normal. And I guess this just is a new normal... just one that find me about 50 years older than I was going in!!! Some of you are aware that I had some serious physical side effects from the aromatase inhibitor (medication) I was supposed to take for at least the next 5 years. I went off that medication in February and most of the symtoms went away. I'm left with just one issue and we are all hoping that was a medication issue too and that it will go away as well. So, my medication was changed to tamoxifen. It's been around a lot longer, decent safety profile, etc. All is well. Until my bloodwork, that is. In some women, tamoxifen can affect the lipid profile. It slaughtered mine! The recent surgical menopause probably contributed a bit too. But, as you've read here before, I had already been working on getting into shape, eating right, etc. My triglycerides and cholesterol are now so high that diet and exercise and supplements are not enough. My levels actually skyrocketed while I was already doing all those things!! So, I get to add yet another medication to my list. I get to have even more bloodwork several times a year. It's a big deal when every needlestick in your arm (either one) is a risk for another possible lifelong complication, lymphedema. So, I try to get my blood drawn from my foot whenever I can. Not easy because not many medical folks have done it before. At least I can talk someone through the process because *I* know how to do it.
So, that's life in the fast lane at the moment. :) Glad to be here.. now to go check on that tag from Dana!
So, what's been going on?
It feels like nothing is going on, especially compared to the trauma at last year at this time. May and early June are always busy times with the end of the school year activities. Rachel's had 2 flute recitals, a band concert, Family Day (another day of school performances and a carnival), dance rehearsals in addition to the 3 day a week ballet classes, and has a few more rehearsals and the spring dance performance next weekend. I've been busy running to all those events. Every once in a while, in the middle of the hubbub, I remember what it was like to be in the midst of all that with the feeling of impending doom hanging over my head. Last year, the goal was to get through all of these things before I started chemotherapy. All our usual fun, after the craziness, Mommy/daughter plans for June were cancelled. This year, we are talking about going to the shore, seeing what Broadway show we can catch by getting tickets at the TKTS booth, spending a day at the Museum of Natural History, visiting friends, etc. :)
In the meantime, I've had a few routine doctor's appointments.
I thoroughly miss the days when a check up was just something totally routine. Everything is much more complicated now. I left my physical at my internists office with a "to do" list that was incredibly long. I've become one of those patients with a complicated problem list. One of those multiple medical problem people. I feel like Rip Van Winkle, like I went to bed one day and woke up 50 years later. I'm supposed to see an allergist (no one else will do my vaccinations because of my allergy history), a cardiologist to consider the possibility of having a stress test (!!!), a gastroenterologist for a colonoscopy (planning to put this one off a tiny bit longer), and a dermatologist (made that appointment). This is in addition to the previously made appointments with my medical oncologist, gynecologic oncologist, breast surgeon (done) and plastic surgeon. The only positive is that after my co-pays (which are higher than ever), I should hit my deductible very soon, if we have not already.
Then, I got my blood test results back. I suspect that nothing is ever easy, even on this road out of Cancer-ville. I thought life was going back to normal. Albeit, a new normal. And I guess this just is a new normal... just one that find me about 50 years older than I was going in!!! Some of you are aware that I had some serious physical side effects from the aromatase inhibitor (medication) I was supposed to take for at least the next 5 years. I went off that medication in February and most of the symtoms went away. I'm left with just one issue and we are all hoping that was a medication issue too and that it will go away as well. So, my medication was changed to tamoxifen. It's been around a lot longer, decent safety profile, etc. All is well. Until my bloodwork, that is. In some women, tamoxifen can affect the lipid profile. It slaughtered mine! The recent surgical menopause probably contributed a bit too. But, as you've read here before, I had already been working on getting into shape, eating right, etc. My triglycerides and cholesterol are now so high that diet and exercise and supplements are not enough. My levels actually skyrocketed while I was already doing all those things!! So, I get to add yet another medication to my list. I get to have even more bloodwork several times a year. It's a big deal when every needlestick in your arm (either one) is a risk for another possible lifelong complication, lymphedema. So, I try to get my blood drawn from my foot whenever I can. Not easy because not many medical folks have done it before. At least I can talk someone through the process because *I* know how to do it.
So, that's life in the fast lane at the moment. :) Glad to be here.. now to go check on that tag from Dana!
Thursday, May 10, 2007
The Martha Stewart Show, May 11 2007- PREVIEW!
Just so you can see what we are wearing and what we look like. :P
Yup. I'm in bright pink again. Makes me easy to spot in a crowd, even if you do need sun glasses once you find me. And, yes, my cheeks are often that bright too, without blush.
Here's a who's who, from left to right across your computer screen...
Chris (Pat's sister), Emilie (the pregnant one), Sonia (aka sonyscraps), Pat Rex (owner of Scrapbooking Moments in Time), Barbara Base, Me, Dana (aka dtuskey), Patria , Beth (my sister), Anne (behind Beth), and Angela.
Dana asks a question of "Big Martha" (Martha's mom) during the truly impromptu "Ask Martha" segment. We actually did not get to see Lindsay Lohan as she wasn't there for the taping, so it will be interesting to see if that segment occurs and is spliced into the show.
Unlike last time, when I was the bald girl in the front row, LOL, I doubt I am on camera at all during the show as I was sitting directly behind the area where most of the production folks stood. That did make for an interesting taping though. The only time I was aware of the camera was the very opening shot. The camera man had me tilt my scrapbook "just so" to get rid of the glare so they could zoom in on a page in my album. :) It just happened to be a page with the TV show logo and photos of my last adventure to visit the show for breast cancer awareness month. Patria and I took a photo of the two of us in front of that same poster again. I want to do a before and after page of some sort. Being back at that studion made me realize just how far I have come. I had so much fun at both tapings, but this time was different. It's not just the no drains and the curly hair. I'm back , if that makes any sense.
Monday, May 07, 2007
The Martha Show, 7 months later
I'm going back for another taping of The Martha Stewart Show tomorrow. :)
You may recall this photo, from my little excursion at the end of September for the taping of a show dedicated to breast cancer survivors.
What a difference a few months make. My hair had just sprouted and now I have a full head of curls. I could even use a haircut now, but that's just not going to happen for quite sometime. I still had 2 drains in from my bilateral (ie double) mastectomy. I can see the wrinkles on the shirt from where I had them pinned. Now those scars are well healed and those drains, that I still had 2 weeks later, are long gone. I even have breasts now. :) Back then, I was living in Cancer-ville every minute. Every thing I did, every move I made, was affected by breast cancer some how. Little things, like I had trouble opening a bottle of water for myself. When I went to scrapbook for the first time, about 3 weeks later, I had trouble using a tape runner. Cancer was everywhere in my life. Now, it's a past tense thing.
This time, Patria will be accompanying me once more. So will my sister and a group of 7 other friends. The show is about scrapbooking, at least a segment or two of it will be. I cannot wait to have pictures from the show with hair and boobs. LOL! :P
You may recall this photo, from my little excursion at the end of September for the taping of a show dedicated to breast cancer survivors.
What a difference a few months make. My hair had just sprouted and now I have a full head of curls. I could even use a haircut now, but that's just not going to happen for quite sometime. I still had 2 drains in from my bilateral (ie double) mastectomy. I can see the wrinkles on the shirt from where I had them pinned. Now those scars are well healed and those drains, that I still had 2 weeks later, are long gone. I even have breasts now. :) Back then, I was living in Cancer-ville every minute. Every thing I did, every move I made, was affected by breast cancer some how. Little things, like I had trouble opening a bottle of water for myself. When I went to scrapbook for the first time, about 3 weeks later, I had trouble using a tape runner. Cancer was everywhere in my life. Now, it's a past tense thing.
This time, Patria will be accompanying me once more. So will my sister and a group of 7 other friends. The show is about scrapbooking, at least a segment or two of it will be. I cannot wait to have pictures from the show with hair and boobs. LOL! :P
Friday, May 04, 2007
My sweet angel!
This past weekend, Rachel decided it was time to donate her gorgeous hair. For various reasons, we choose Pantene's Beautiful Lengths to donate her hair to. This program, probably much less known than Locks of Love, creates real hair wigs (as opposed to the very expensive synthetic wig I purchased) and makes them available through the American Cancer Society for those undergoing chemotherapy. {Locks of Love 's program is for children with long term hair loss, not kids undergoing chemo as is popularly thought.. a good cause nonetheless, but not what most people understand.} I wish I had known about the Pantene program when I had my hair cut short in anticipation of the massive chemo related loss. Another little plus is that they only require 8 inches of hair for a donation. Rachel donated about 9 inches.
We went to a local mall to get her hair cut. She had wanted to do this back in November at a hair cutting party held at her school, but in all honesty, I wasn't ready. I was still wearing a wig back in November. While I did take it off to show the children at school, it was still crew cut like length, not ready for public viewing. LOL
I admit I do love her hair at this length! She does too. She's quickly become the queen of headbands, coordinating them to every outfit. Putting her hair up in a bun for ballet 3 days a week isn't easy at this length, but it will be by September. Rachel's now debating growing it to donate all over again or possibly keeping it around this length.
I am so incredibly proud of my little girl. Not only has she donated her hair, she's been working on fundraising as well. About a month ago, she came up with an idea for a business. She decided to sell friendship bracelets to raise money for a cancer related cause. Very quickly, in just 3 days, she raised over $100, all essentially on the playground. She created quite a stir at school. She ended up employing other children to make the bracelets, but not before she charged them to learn how! She has since started tasking orders. Demand at school has slowed down a bit, so she's decided to go on-line with her sales after I get around to creating a web site for her.
Monday, April 30, 2007
May Day
Didn't see the double entendre (sp) in that until now.
May Day.
LOL.
We woke up so very early that morning last year. No need for an alarm clock. As scared as I was that morning, I was also thrilled beyond belief to have that stinkin' little cancer GONE from my body.
The day began with the usual check in. Only it wasn't usual then. I wasn't used to getting a hospital bracelet and filling out forms and sitting in a waiting room. I was used to being on the other side of the double doors. I had to change into one of those lovely hospital gowns, have an IV started and wait in a little pre-op cubicle instead of hanging out in scrubs, waiting for someone else to go through those steps.
The next stop on my tour that morning would be radiology. They took me back through the handy-dandy back corridor. A nice thing when you consider the lovely hospital gown I was wearing. The technician was a doll. She was cheery. Not overly so, but enough. She tried to convince me maybe it wasn't cancer. I think I actually said the words "Did you look at the mammogram?" (you can imagine my tone. LOL). As much as I would have loved that have been true, I knew there was no way.
The whole needle localization procedure was much more pleasant than I ever would have thought. I was anticipating much worse. Everyone in the room- the tech, nurse and radiologist, was a woman, so that helped. They were all quite interested in the fact that I am an ob/gyn, I think. Lots of chatting. By the time I left that room, I knew the medical history of every one in the room probably better than they knew mine! LOL. For anyone that hasn't had one of these, done, it was not terrible by any means. They did yet another mammogram (digital so it appeared on the computer screen immediately). Then, once I was positioned perfectly, I was given an injection of a local anesthetic. That was perhaps the worst part- the stinging from that was the worst pain I would have all day. And that wasn't outrageous- just like a bee sting or two or three. I did feel pressure from the needle being placed, but that was all. Once the position was confirmed (super quick with the digital mammo), I was bandaged up and taken back to my little cubicle.
The waiting was hard. They had sent Howie back to the waiting room, so I was in my cubicle waiting, all alone and without anything to read. At that point, I did not need to be alone. I needed to be with someone or have my book to read to keep my mind on something else. I needed a distraction. Any distraction.
The distraction eventually came in the form of the anesthesiologist. He came in and asked the standard questions. I was more than happy to comply. Anything to keep busy. The best moment came in the middle of the interview. He looks up and asks, "Do you have a sister who is an ob/gyn?" LOL! Seriously! This is what he asked! I said "Umm, Skip, IT'S ME!!" To be fair, it had been a good 3 years since I was an attending at that hospital and he had, at one time, cared for my sister in some capacity.
Eventually, someone realized I was back and brought Howie back to sit with me for a few very short minutes. I know I shed a few tears off and on, quietly, while we were back in that little cubicle. Anytime it felt too real, it made me tear up.
I suppose I am fortunate for this next part, because walking into an operating room is second nature for me. It's comfortable, almost relaxing. It's always familiar, even if it's an OR I've never seen before. It feels like home... until they ask you to climb ONTO the table! That's the part that is the oddest. I feel like a child playing make believe when I have to be the patient! This part does go very quickly though. I did climb onto the table (remember I am short so it is a climb). I remember the warmth of the pre-meds as they flowed into my arm. I remember Skip saying he was going to give me a mask with oxygen... and that's all. The next thing I knew, I was in the recovery room.
Recovery rooms are a funny place. Being a patient reminded me of this. I KNOW Susan said to me "It was a cancer and the sentinal node was negative." What's funny is that I have no memory of her saying this. I just know she said it. I had to ask the nurse if she really came and said that to me. LOL. The same nurse who told me to stop checking my own vital signs. Yup. It turns out that's one of the first things I do when I wake up in a recovery room. I check my vitals. LOL. I wonder if other people do this. Anyway, I am now exceeding conscious of what I tell patients in the recovery room, no matter how awake they seem.
Enough about that. I went home the same day. I still thought it was all going to be easy. On the bottom of my post-op instruction sheet from the breast surgeon was written something along the lines of how "this diagnosis may profoundly change your life." Something like that. I can't recall the exact words. I remember looking at those words and thinking to myself.. "No. Not me. This is going to be a little bump in the road that I will barely remember in a short time. The cancer is out. I'll have some radiation and then it will just be something in the past." I was so convinced it was all going to be simple. A year later, I know the truth.
Today, this cancer-versary day, is a bizarre day. An emotional day. I've already been teary and anxious. I've already been happy and at peace. I've already walked 3 miles, even singing and dancing part of the way (an advantage of walking on the canal tow path at 8 am when there's no one else around.. I do check before I sing. LOL). And it's still morning.
I do know one thing. I am ready to move on. They say it takes it about the same amount of time to recover as it did to get through treatment. So, let's get moving and get this recovery thing going!
May Day.
LOL.
We woke up so very early that morning last year. No need for an alarm clock. As scared as I was that morning, I was also thrilled beyond belief to have that stinkin' little cancer GONE from my body.
The day began with the usual check in. Only it wasn't usual then. I wasn't used to getting a hospital bracelet and filling out forms and sitting in a waiting room. I was used to being on the other side of the double doors. I had to change into one of those lovely hospital gowns, have an IV started and wait in a little pre-op cubicle instead of hanging out in scrubs, waiting for someone else to go through those steps.
The next stop on my tour that morning would be radiology. They took me back through the handy-dandy back corridor. A nice thing when you consider the lovely hospital gown I was wearing. The technician was a doll. She was cheery. Not overly so, but enough. She tried to convince me maybe it wasn't cancer. I think I actually said the words "Did you look at the mammogram?" (you can imagine my tone. LOL). As much as I would have loved that have been true, I knew there was no way.
The whole needle localization procedure was much more pleasant than I ever would have thought. I was anticipating much worse. Everyone in the room- the tech, nurse and radiologist, was a woman, so that helped. They were all quite interested in the fact that I am an ob/gyn, I think. Lots of chatting. By the time I left that room, I knew the medical history of every one in the room probably better than they knew mine! LOL. For anyone that hasn't had one of these, done, it was not terrible by any means. They did yet another mammogram (digital so it appeared on the computer screen immediately). Then, once I was positioned perfectly, I was given an injection of a local anesthetic. That was perhaps the worst part- the stinging from that was the worst pain I would have all day. And that wasn't outrageous- just like a bee sting or two or three. I did feel pressure from the needle being placed, but that was all. Once the position was confirmed (super quick with the digital mammo), I was bandaged up and taken back to my little cubicle.
The waiting was hard. They had sent Howie back to the waiting room, so I was in my cubicle waiting, all alone and without anything to read. At that point, I did not need to be alone. I needed to be with someone or have my book to read to keep my mind on something else. I needed a distraction. Any distraction.
The distraction eventually came in the form of the anesthesiologist. He came in and asked the standard questions. I was more than happy to comply. Anything to keep busy. The best moment came in the middle of the interview. He looks up and asks, "Do you have a sister who is an ob/gyn?" LOL! Seriously! This is what he asked! I said "Umm, Skip, IT'S ME!!" To be fair, it had been a good 3 years since I was an attending at that hospital and he had, at one time, cared for my sister in some capacity.
Eventually, someone realized I was back and brought Howie back to sit with me for a few very short minutes. I know I shed a few tears off and on, quietly, while we were back in that little cubicle. Anytime it felt too real, it made me tear up.
I suppose I am fortunate for this next part, because walking into an operating room is second nature for me. It's comfortable, almost relaxing. It's always familiar, even if it's an OR I've never seen before. It feels like home... until they ask you to climb ONTO the table! That's the part that is the oddest. I feel like a child playing make believe when I have to be the patient! This part does go very quickly though. I did climb onto the table (remember I am short so it is a climb). I remember the warmth of the pre-meds as they flowed into my arm. I remember Skip saying he was going to give me a mask with oxygen... and that's all. The next thing I knew, I was in the recovery room.
Recovery rooms are a funny place. Being a patient reminded me of this. I KNOW Susan said to me "It was a cancer and the sentinal node was negative." What's funny is that I have no memory of her saying this. I just know she said it. I had to ask the nurse if she really came and said that to me. LOL. The same nurse who told me to stop checking my own vital signs. Yup. It turns out that's one of the first things I do when I wake up in a recovery room. I check my vitals. LOL. I wonder if other people do this. Anyway, I am now exceeding conscious of what I tell patients in the recovery room, no matter how awake they seem.
Enough about that. I went home the same day. I still thought it was all going to be easy. On the bottom of my post-op instruction sheet from the breast surgeon was written something along the lines of how "this diagnosis may profoundly change your life." Something like that. I can't recall the exact words. I remember looking at those words and thinking to myself.. "No. Not me. This is going to be a little bump in the road that I will barely remember in a short time. The cancer is out. I'll have some radiation and then it will just be something in the past." I was so convinced it was all going to be simple. A year later, I know the truth.
Today, this cancer-versary day, is a bizarre day. An emotional day. I've already been teary and anxious. I've already been happy and at peace. I've already walked 3 miles, even singing and dancing part of the way (an advantage of walking on the canal tow path at 8 am when there's no one else around.. I do check before I sing. LOL). And it's still morning.
I do know one thing. I am ready to move on. They say it takes it about the same amount of time to recover as it did to get through treatment. So, let's get moving and get this recovery thing going!
The day before May 1st
So, here we are.
The day before May 1st.
The last day of April.
I don't have to turn to my journal to remember this day in 2006. I can hardly believe it's 2007. This last year flew by in a strange, telescoping time warp. There are huge chunks of time that I can't or don't choose to remember and others of which I remember every minute detail.
May 1 was a Monday last year. That Sunday was my niece's naming. We had never had one for Rachel, so we had the rabbi add on a little bit, more of a blessing, for Rachel as well. It was such a difficult day. I just wanted to say it aloud, but I couldn't. I knew the moment I did, it would become "the day Melissa told us she had cancer" instead of Hannah's naming. It was so much easier to pretend it wasn't happening. It wasn't real. Maybe I could wake up and find it was all a nightmare. The funny thing is, now, a year later, I wake up and sometimes do think maybe it was all a nightmare. And then something brushes against my chest and I see it but can't feel it. Or I catch a glimpse of myself in a mirror.
Looking back, the day wasn't too bad. At least, not until we dropped Rachel off afterwards. We had to be at the hospital at 6:45 am (funny how I can remember that detail) so she got to have a sleepover on a school night. Truly, this was the hardest part. The moment we drove down the street to the Sullivan's and Rachel got out of the car, was the moment it all became far too real. The next morning, I would become a cancer patient. I tear up just thinking about that moment. I remember how the air felt that afternoon, how blue the sky was, how pretty my little girl looked, and I remember the tears that flowed as soon as she closed the car door. It sounds so dramatic, but the moment the door closed, it felt like I was closing a chapter of my life. In reality, that chapter ended the day I had the diagnostic mammogram, but it felt like it ended at that moment.
So, tomorrow it will mark one full year. It gives me chills to think about it. So, I won't. :)
The day before May 1st.
The last day of April.
I don't have to turn to my journal to remember this day in 2006. I can hardly believe it's 2007. This last year flew by in a strange, telescoping time warp. There are huge chunks of time that I can't or don't choose to remember and others of which I remember every minute detail.
May 1 was a Monday last year. That Sunday was my niece's naming. We had never had one for Rachel, so we had the rabbi add on a little bit, more of a blessing, for Rachel as well. It was such a difficult day. I just wanted to say it aloud, but I couldn't. I knew the moment I did, it would become "the day Melissa told us she had cancer" instead of Hannah's naming. It was so much easier to pretend it wasn't happening. It wasn't real. Maybe I could wake up and find it was all a nightmare. The funny thing is, now, a year later, I wake up and sometimes do think maybe it was all a nightmare. And then something brushes against my chest and I see it but can't feel it. Or I catch a glimpse of myself in a mirror.
Looking back, the day wasn't too bad. At least, not until we dropped Rachel off afterwards. We had to be at the hospital at 6:45 am (funny how I can remember that detail) so she got to have a sleepover on a school night. Truly, this was the hardest part. The moment we drove down the street to the Sullivan's and Rachel got out of the car, was the moment it all became far too real. The next morning, I would become a cancer patient. I tear up just thinking about that moment. I remember how the air felt that afternoon, how blue the sky was, how pretty my little girl looked, and I remember the tears that flowed as soon as she closed the car door. It sounds so dramatic, but the moment the door closed, it felt like I was closing a chapter of my life. In reality, that chapter ended the day I had the diagnostic mammogram, but it felt like it ended at that moment.
So, tomorrow it will mark one full year. It gives me chills to think about it. So, I won't. :)
Thursday, April 26, 2007
Let's Pretend
I mentioned to a friend today that I am back in my "let's just pretend this never happened" mode. I am trying to get back in shape, ideally better than I was before. I'm slowly tackling my house, trying to get it back in shape, ideally better than it was before too! I'll settle for some semblance of shape, on both accounts. I'm letting my hair grow and grow and grow, despite nearly everyone else telling me I should keep it like this. Bit by bit, I'm working on making it look like all this never happened. I think it just might be the next step in recovery.
I just pulled out the calendar, which was sitting on the corner of my newly organized and somewhat de-cluttered desk (yesterday's project). Oddly enough, I had pulled the 2006 calendar instead of 2007. Out of curiousity, I took a peak. A year ago today, I was less than a week away from the first surgery, lumpectomy and sentinal node biopsy. I had already seen the breast surgeon and had already gone for pre-admission testing and pulmonary function testing, so the anesthesiologist wouldn't get uptight about my touch of asthma. There are all sorts of things listed on the calendar for that day and the following days- all non-cancer related. Several different dance rehearsals for Rachel, orthodontist appointment, etc. I remember running around like everything was just perfectly normal, knowing that nothing was normal at all. I didn't have time for cancer. I still don't.
I just pulled out the calendar, which was sitting on the corner of my newly organized and somewhat de-cluttered desk (yesterday's project). Oddly enough, I had pulled the 2006 calendar instead of 2007. Out of curiousity, I took a peak. A year ago today, I was less than a week away from the first surgery, lumpectomy and sentinal node biopsy. I had already seen the breast surgeon and had already gone for pre-admission testing and pulmonary function testing, so the anesthesiologist wouldn't get uptight about my touch of asthma. There are all sorts of things listed on the calendar for that day and the following days- all non-cancer related. Several different dance rehearsals for Rachel, orthodontist appointment, etc. I remember running around like everything was just perfectly normal, knowing that nothing was normal at all. I didn't have time for cancer. I still don't.
Sunday, April 22, 2007
The Glass, Half Full
I don't believe I was born an optimist. I think I become one somewhere along the line. I don't know when, I just know that optimism is such a deeply ingrained part of my nature. On second thought, maybe I always have been an optimist. Just a realistic one, so sometimes I might just appear pessimistic, but it's only when there really is no hope. Some of the blog entries that were written on my darker days ended up with such positive responses. It amazed me that people would find something I didn't see or feel in those entries.
You'll notice that I said "darker" days. There are no blog entries from the darkest of days. Those are the days between when I had the mammogram and saw the breast surgeon. And again, the days between my first post-op visit and the realization that chemotherapy would be in my near future.
It's now a year from that first meeting with the breast surgeon. My first meeting as patient, that is. She had been my mentor for my 2 month elective in breast surgery, of all things, during my last year of residency.
I knew I was right about the diagnosis when I got the appointment. They received my mammo report on either Wednesday night or Thursday morning. First thing Thursday morning, there was a text message on my phone (not sure when it was sent) to call the office. She gave me an appointment for the very next day. My surgeon is a busy woman in a very busy practice. She triages appointments. Had she thought this was anything else other than cancer, my appointment would have been anywhere from days to weeks later.
You know it's never good news when the first thing that happens is the doctor walks into the room, gives you a hug and says "I'm so sorry." I probably could have left the room at that point. The diagnosis, albeit not official, was confirmed in that moment. I can still picture it. It was like a scene from a movie. I don't like that. You know how those movies end.
Back to my optimism. After that appointment, I focused on a few things. One was that she thought my nodes would be negative. I loved hearing that because it meant no chemo. Boy, would that one backfire. Small tumor, so lumpectomy is all that would be needed. I cut her off before she got more than a word or two into the mastectomy discussion. Looking back, I know I needed a lot more time to come to that decision. She was disappointed that I didn't bring anyone to that appointment. Yes, I went all alone. I knew what I had and thought I knew what I wanted. I wonder if I would have listened had she discussed a bilateral mastectomy at that opint.
The other concept that I clung to was that this was going to be stage 1 which has a 96% survival rate. I must have recited that number a million times. It became not just my favorite number in the whole world, but my own little mantra. 96% survival!
Of course, over time, I learned some of the above would not be so accurate. The tumor was grade 3 and a bit more aggressive than I had imagined. Funny, that I imagined my own tumor. I thought it should be well differentiated, moderately differentiated at worst. Didn't ever envision it would be poorly differentiated. I hate poorly differentiated tumors. They are bad news. They don't know how to behave like normal civilized cells. These are the tumors most likely to spread and cause havoc elsewhere.
Also, in my optimism, I completely ignored that the reported survival rates are just 5 year rates. I'll bet some of you didn't know that. A 96% survival rate is a beautiful thing. Don't get me wrong. But it doesn't mean as much as a 10 year or 20 year rate. It also lumps together a whole lot of disparate situations. A stage 1 tumor in a 60 year old woman is a different animal than a stage 1 tumor in a premenopausal woman. {sigh} I still like to ignore these things. 5 year survival is important, but it's not disease free survival either. Nor do these numbers look at recurrence. Nor do they look at something almost as bad, the chance of a new breast primary someday.
I do admit that once I had this appointment, it was a little bit easier to go on. I had a plan and a date. My surgery would be May 1. It could have been sooner, but I had to get in to see my internist for medical clearance. I also had to learn to say "I have cancer." Those words flow so easily now, but they were not only hard to say back then, they were hard to type. It made it real and I didn't want this to be real. It's a year later and now I say "I had cancer." And I still don't want it to be real. Sometimes, I even forget. Then, I catch a glimpse of myself in the mirror. I don't recognize this older woman with curly hair who looks back at me. And I certainly do not recognize this body. But, the forgetting is a good thing. A very good thing. It means that eventually, there will be longer and longer blocks of time when I forget this happened in my life. It means that Cancerville will be a place I used to live in. I won't be going back, not even for vacations! :P
You'll notice that I said "darker" days. There are no blog entries from the darkest of days. Those are the days between when I had the mammogram and saw the breast surgeon. And again, the days between my first post-op visit and the realization that chemotherapy would be in my near future.
It's now a year from that first meeting with the breast surgeon. My first meeting as patient, that is. She had been my mentor for my 2 month elective in breast surgery, of all things, during my last year of residency.
I knew I was right about the diagnosis when I got the appointment. They received my mammo report on either Wednesday night or Thursday morning. First thing Thursday morning, there was a text message on my phone (not sure when it was sent) to call the office. She gave me an appointment for the very next day. My surgeon is a busy woman in a very busy practice. She triages appointments. Had she thought this was anything else other than cancer, my appointment would have been anywhere from days to weeks later.
You know it's never good news when the first thing that happens is the doctor walks into the room, gives you a hug and says "I'm so sorry." I probably could have left the room at that point. The diagnosis, albeit not official, was confirmed in that moment. I can still picture it. It was like a scene from a movie. I don't like that. You know how those movies end.
Back to my optimism. After that appointment, I focused on a few things. One was that she thought my nodes would be negative. I loved hearing that because it meant no chemo. Boy, would that one backfire. Small tumor, so lumpectomy is all that would be needed. I cut her off before she got more than a word or two into the mastectomy discussion. Looking back, I know I needed a lot more time to come to that decision. She was disappointed that I didn't bring anyone to that appointment. Yes, I went all alone. I knew what I had and thought I knew what I wanted. I wonder if I would have listened had she discussed a bilateral mastectomy at that opint.
The other concept that I clung to was that this was going to be stage 1 which has a 96% survival rate. I must have recited that number a million times. It became not just my favorite number in the whole world, but my own little mantra. 96% survival!
Of course, over time, I learned some of the above would not be so accurate. The tumor was grade 3 and a bit more aggressive than I had imagined. Funny, that I imagined my own tumor. I thought it should be well differentiated, moderately differentiated at worst. Didn't ever envision it would be poorly differentiated. I hate poorly differentiated tumors. They are bad news. They don't know how to behave like normal civilized cells. These are the tumors most likely to spread and cause havoc elsewhere.
Also, in my optimism, I completely ignored that the reported survival rates are just 5 year rates. I'll bet some of you didn't know that. A 96% survival rate is a beautiful thing. Don't get me wrong. But it doesn't mean as much as a 10 year or 20 year rate. It also lumps together a whole lot of disparate situations. A stage 1 tumor in a 60 year old woman is a different animal than a stage 1 tumor in a premenopausal woman. {sigh} I still like to ignore these things. 5 year survival is important, but it's not disease free survival either. Nor do these numbers look at recurrence. Nor do they look at something almost as bad, the chance of a new breast primary someday.
I do admit that once I had this appointment, it was a little bit easier to go on. I had a plan and a date. My surgery would be May 1. It could have been sooner, but I had to get in to see my internist for medical clearance. I also had to learn to say "I have cancer." Those words flow so easily now, but they were not only hard to say back then, they were hard to type. It made it real and I didn't want this to be real. It's a year later and now I say "I had cancer." And I still don't want it to be real. Sometimes, I even forget. Then, I catch a glimpse of myself in the mirror. I don't recognize this older woman with curly hair who looks back at me. And I certainly do not recognize this body. But, the forgetting is a good thing. A very good thing. It means that eventually, there will be longer and longer blocks of time when I forget this happened in my life. It means that Cancerville will be a place I used to live in. I won't be going back, not even for vacations! :P
Thursday, April 19, 2007
So.. a year ago today, I tried to carry on in "business as usual mode" as best I could. I was in limbo. Waiting for the radiology reports to be written. Waiting for a call back from the surgeon's office. Waiting for an uncertain future. These earliest days are the hardest part of the cancer journey. So much uncertainty. As a physician, I am all too familiar with this. So, I didn't tell. Very much not my normal nature, but I didn't want to scare everyone unnecessarily. I did tell a small group of online friends (hi pukesters), which includes one of the gang at my local scrapbook store, so they knew as well. Otherwise, it was just my husband and my sister.
Looking back, I wonder how I got through that day. No answers. No plan. No nothing. Just the knowledge that I had breast cancer. No idea if it had spread beyond the breast. No idea if that nagging pain in my hip was metastatic disease of just the result of having started a new exercise program a few weeks prior. Just an all around lousy time.
It was a Wednesday. I usually spent the third Wednesday of every month at my local scrapbooking store, Scrapbooking Moments in Time (SMIT) in Bound Brook, NJ. Dana had forwarned Pat, so it was a totally shock when I mentioned this in passing. Having the store as a place to go, a place made special by the people inside, gave me, once again, the escape I needed.
But, I can't go there today. As a result of the recent storm, it was under 6 feet of water, along with the rest of Main Street. There are photos at this link. SMIT is a special place. It's like Cheers, a place where everyone knows your name. It's only been a few days, but I already miss being able to pop in. So to Pat, Dana, and the gang.... you are in our thoughts and prayers!
It was a Wednesday. I usually spent the third Wednesday of every month at my local scrapbooking store, Scrapbooking Moments in Time (SMIT) in Bound Brook, NJ. Dana had forwarned Pat, so it was a totally shock when I mentioned this in passing. Having the store as a place to go, a place made special by the people inside, gave me, once again, the escape I needed.
But, I can't go there today. As a result of the recent storm, it was under 6 feet of water, along with the rest of Main Street. There are photos at this link. SMIT is a special place. It's like Cheers, a place where everyone knows your name. It's only been a few days, but I already miss being able to pop in. So to Pat, Dana, and the gang.... you are in our thoughts and prayers!
In their honor, I thought it was time to share a little scrapbooking here again. :) Can't share my newest Boxer stuff until it's posted on their website, but I can start with the new papers from my other design team work, Scribble Scrabble. The third one is with papers from Sweetwater Express, but features my nephew, Marco, one of the most content babies I have ever seen.
Wednesday, April 18, 2007
A year ago today and other ramblings
As I watched the coverage of the tragedy at Virginia Tech, a screen came up with all sorts of tragic events that have occurred this week in history.
I had to agree.
April 18, 2006 was my D-Day.
Excerpts from my journal:
10:15 am :University Radiology
I walked in thinking this was no big deal. EVERYONE has repeat mammos and 80-90% of those are pretty meaningless. Still, I'm a tiny bit nervous sitting in the waiting area inside the office reserved for those "on deck" in the lovely paper gown.
The technician this time was as sweet as can be. If I could remember her name, I'd request her again (N.B. remember, this was written a year ago! LOL) I saw my screening mammo hanging on the screen and saw that red grease pen circle. It circled a tiny hyperechoic area. Not strongly hyperechoic, but enough to catch the radiologist's attention.
When she brought the next film back, I knew this wasn't a routine follow-up anymore. She took tighter and tighter compression films. As the plates get smaller, the pain gets higher! And people worry about a routine mamo!!! That's nothing!
The next film showed that the nodule (it was a nodule by then) was not round and did not have smooth edges. I knew it would have to come out. I shocked the technician when I said that aloud. She had no idea I was an MD. Apparently, they normally indicate this but no one asked and I didn't tell.
6 more films later, it was time for the ultrasound. The radiologist pronounced the nodule "suspicious." Suspicious? I knew it was breast cancer.
I was OK until I walked out of the building. I pulled on my sunglasses and then the tears began to flow. I called Howie and left a tearful message. I doubt he understood a word. I went to finish my errands. I filled the car with gas. While sitting at the pump (NB. This is NJ, someone else does the pumping), I called the insurance company to see if the breast surgeon I wanted was in the plan. Of course, they said no. They even said breast is not a specialty. I knew I wanted someone who ONLY does breast and that was that. (Kind of funny how quickly I moved into "action" mode. I stayed in that mode for months.)
I came home, got online and called the office I wanted to go to. Sure enough, she was in the plan!! I then called the radiology office to fax my results there, once they were available.
And then, I waited.
So, it's exactly a year ago today that I knew. It feels like a lifetime. I saw something scrapbook related recently that was asking about a moment that changed your life. My life changed in the moment I saw that spiculated little nodule on the screen. There was nothing else it could be. The rollercoaster ride that is cancer began. If you know me well, you know that I hate rollercoasters and don't ride them on purpose.
Of course, it's not all bad. I'm a survivor. It's the label I wear now and it defines me in many ways. Something I took away from the very first conversation I had with Dana, a survivor who's pretty much exactly a year ahead of me now one of my "bestest" friends on the planet, is that you'll quickly learn who your real friends are. It was amazing just how true that was. There are those that I thought were friends who rapidly disappeared from my life. Pretty amazing how quickly that happened. Others, from afar, some that I barely knew before this, who made sure to send an email or a card. Small gestures that I won't ever forget. There's also an incredible bond amongst my fellow cancer girls- the new friends I've made this year. Stef, who was diagnosed while I was finishing my active treatment and finally starting to come to terms with what having a disease that might kill you means (we got to do some of that together). Jaci, who's somewhat local.. we met to go shopping, grabbed a bite to eat and chatted for hours as if we had always known each other. Some of my other YSC friends and my chemogroup from breastcancer.org. Of course, I can't exclude my husband, who stood along side me, taking care of all the little details. I had to turn down food from the nurses at the hospital when I was first diagnosed because one of his first responses was to fill the fridge and the freezer. And there's my sister and my sister like friend, Patria, who rescued me several times this past year. I'm not good at the mushy stuff as a rule, and I'm sure there are others I should be naming, but you all mean the world to me and I couldn't wear the survivor label without you all. :)
I had to agree.
April 18, 2006 was my D-Day.
Excerpts from my journal:
10:15 am :University Radiology
I walked in thinking this was no big deal. EVERYONE has repeat mammos and 80-90% of those are pretty meaningless. Still, I'm a tiny bit nervous sitting in the waiting area inside the office reserved for those "on deck" in the lovely paper gown.
The technician this time was as sweet as can be. If I could remember her name, I'd request her again (N.B. remember, this was written a year ago! LOL) I saw my screening mammo hanging on the screen and saw that red grease pen circle. It circled a tiny hyperechoic area. Not strongly hyperechoic, but enough to catch the radiologist's attention.
When she brought the next film back, I knew this wasn't a routine follow-up anymore. She took tighter and tighter compression films. As the plates get smaller, the pain gets higher! And people worry about a routine mamo!!! That's nothing!
The next film showed that the nodule (it was a nodule by then) was not round and did not have smooth edges. I knew it would have to come out. I shocked the technician when I said that aloud. She had no idea I was an MD. Apparently, they normally indicate this but no one asked and I didn't tell.
6 more films later, it was time for the ultrasound. The radiologist pronounced the nodule "suspicious." Suspicious? I knew it was breast cancer.
I was OK until I walked out of the building. I pulled on my sunglasses and then the tears began to flow. I called Howie and left a tearful message. I doubt he understood a word. I went to finish my errands. I filled the car with gas. While sitting at the pump (NB. This is NJ, someone else does the pumping), I called the insurance company to see if the breast surgeon I wanted was in the plan. Of course, they said no. They even said breast is not a specialty. I knew I wanted someone who ONLY does breast and that was that. (Kind of funny how quickly I moved into "action" mode. I stayed in that mode for months.)
I came home, got online and called the office I wanted to go to. Sure enough, she was in the plan!! I then called the radiology office to fax my results there, once they were available.
And then, I waited.
So, it's exactly a year ago today that I knew. It feels like a lifetime. I saw something scrapbook related recently that was asking about a moment that changed your life. My life changed in the moment I saw that spiculated little nodule on the screen. There was nothing else it could be. The rollercoaster ride that is cancer began. If you know me well, you know that I hate rollercoasters and don't ride them on purpose.
Of course, it's not all bad. I'm a survivor. It's the label I wear now and it defines me in many ways. Something I took away from the very first conversation I had with Dana, a survivor who's pretty much exactly a year ahead of me now one of my "bestest" friends on the planet, is that you'll quickly learn who your real friends are. It was amazing just how true that was. There are those that I thought were friends who rapidly disappeared from my life. Pretty amazing how quickly that happened. Others, from afar, some that I barely knew before this, who made sure to send an email or a card. Small gestures that I won't ever forget. There's also an incredible bond amongst my fellow cancer girls- the new friends I've made this year. Stef, who was diagnosed while I was finishing my active treatment and finally starting to come to terms with what having a disease that might kill you means (we got to do some of that together). Jaci, who's somewhat local.. we met to go shopping, grabbed a bite to eat and chatted for hours as if we had always known each other. Some of my other YSC friends and my chemogroup from breastcancer.org. Of course, I can't exclude my husband, who stood along side me, taking care of all the little details. I had to turn down food from the nurses at the hospital when I was first diagnosed because one of his first responses was to fill the fridge and the freezer. And there's my sister and my sister like friend, Patria, who rescued me several times this past year. I'm not good at the mushy stuff as a rule, and I'm sure there are others I should be naming, but you all mean the world to me and I couldn't wear the survivor label without you all. :)
Wednesday, April 11, 2007
The Long Awaited "TALE OF THE DEEP BLUE PEE"
Ahh yes...
I told you there would be lots of reminiscing in the coming weeks. We are now a year from when I had the first of my last mammograms. Last April was a nightmare. I clung to every little positive tidbit I was told and made those my mantra. When I look back now, I see how naively optomistic I was. Optomism is a good thing. A very good thing. I know it's what held me together back then.
In one of my early blog posts from when I finally went public last June, I promised to share the "Tale of the Deep Blue Pee." It's really the first of my "Tales from the Cancer Chronicles." Hmm.. maybe I'll write it all in a book someday. In the meantime, here's the tale direct from my private journal.
**************************************************************************************
I told you there would be lots of reminiscing in the coming weeks. We are now a year from when I had the first of my last mammograms. Last April was a nightmare. I clung to every little positive tidbit I was told and made those my mantra. When I look back now, I see how naively optomistic I was. Optomism is a good thing. A very good thing. I know it's what held me together back then.
In one of my early blog posts from when I finally went public last June, I promised to share the "Tale of the Deep Blue Pee." It's really the first of my "Tales from the Cancer Chronicles." Hmm.. maybe I'll write it all in a book someday. In the meantime, here's the tale direct from my private journal.
**************************************************************************************
A Funny Thing Happened on the Way to the
BATHROOM
or
the many colors of cancer
It goes like this.
You go to the hospital.
You have a needle localization (a mammogram with a wire placed into your tumor).
You go to the OR and go to sleep. While you are sleeping, blue dye is injected into your breast so the sentinal node, the most important lymph node, can be found. The dye stains your skin and can last a very long time (trust me.. it was still there when that breast was removed 4 months later). Might even be permanent.
Anyway, you wake up from all this and after being pumped up with fluids, you need to use the bathroom. You just had surgery, so a nurse helps you get to the bathroom.
You use the facilities, releasing VAST quantities of urine. You flush and notice the beautiful BLUE water. It is such a pretty color, just like the Carribean waters. You think "Hmmm.... someone must have just cleaned this bathroom. How nice!"
SERIOUSLY!!!
This is what I thought until the nurse said something about
BLUE URINE!!
Yes.
I am a physician.
Yes.
I did research before the surgery.
Yes.
I have even used this same dye on other people. But I use it to test urinary tract integrity so OF COURSE THE URINE IS BLUE!
How in all of this I never managed to hear about the BLUE urine is beyond me!!!!!!
Oh yes... it lasted for a few days too!
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