Gyn Onc visit went well on Weds. Dr. F. does not like the idea of supracervical lap hyst. Does not like the idea of morselization in the abdomen of the uterus, even though it should not contain any cancer. Does recommend a DaVinci robotic total laparoscopic hyst with bso(bilateral salpingo-oophorectomy), if I want my uterus out. He is supportive of my feeling that it leaves more options open for HRT, or tamixifen etc. if needed later.
This procedure uses the new DaVinci machine to provide better visualization of the abdomen, and does the procedure through the abdomen, then 'delivers' the uterus, ovaries, tubes through the vagina. (I am assuming possible transvag morselization if vag too small and uterus too large )
He says 23 hour observation in hospital then home and off work for 10 days, (but not 100% then) Sounds good to me. He is compassionate, kind, willing to disagree with me and explain why.
Went to therapist appt on Thurs. Praised for trying to take good care of myself.
Then got the call with OR date. April 9th. Lousy date , as it is the first day back after spring break. But the surgeon's time and the DaVinci machines are tightly scheduled. Might be mid or end of April otherwise. I am too superstitious and too nervous about that 10% risk of ovca (ovarian CA)already being present to pass up a surgical date.
Trying to praise myself for making 2 good, hard decisions about risk reduction surgeries. Trying to let myself off the hook for other things such as contradictory religious beliefs, etc.
Trying to let the good surgeon who I trust keep track of which surgery is right for me.
Hopefully the breast surgeon will make that as easy as Dr. F.
Warm enough for a good bike ride. Enjoying the emergence of spring.
Margaret, with a lot of work to do, but really wanting a nap
____________________________________________
There is controversy about whether to do a hysterectomy with the oophorectomy for risk reduction in BRCA. There is a slight risk of fallopian tube cancer at the attachment to the uterus. The surgery is more intensive with a harder recovery time and more risk of complications. The absence of uterus, allows estrogen only hormone therapy. The absence of uterus means no risk of uterine cancer from tamoxifen and aromatase inhibitors.
The DaVinci total laparoscopic hysterectomy with bilateral salpingo oophorectomy, is a new procedure, with reports of less recovery time. Risk with a new procedure is the "learning curve" meaning that it takes a doc a certain number of times to do a procedure before s/he is as proficient at it as s/he should be to minimize risks. One person on the FORCE site quoted 50 cases, for a laparoscopic procedure.
Saturday, March 31, 2007
Who else would be BRCA positive?
Below are a list of things that lead to me being here, BRCA+ and ready to take action with risk reduction surgeries, instead of here in a few years from now, with cancer.
The suprise of the situation is being replaced by the notion that it really is not random.
Hard to accept that God would intervene in so many ways to get me here, in time, I hope. Wondering why.
Hearing people say that there doesn't have to be a reason to receive God's Grace. Having a hard time accepting that. Wondering what the purpose is. Knowing that I can accept His grace and that I cannot earn it or make up for it, but wondering what the purpose is.
Having odd thoughts of an "Oh God" like scenario, except that I make a much more unlikely disciple than John Denver ever was.
I realize that there are some obvious things about me having BRCA mutation that make sense. As the oldest, I can set a good example for my cousins. (And I know Steve, that I have to put it out there, and let it sit for them to do with what they will)
As a bold person at my hospital, I can't help talk about my situation. So far, I am scaring one colleague, who knows she needs an ooph as soon as she is done having children. I have gotten the attention of a drug rep who needs to get tested, and a doc, who describes a family that sounds BRCA2+ to me, and who wants to learn about testing.
So, in addition to trying to save my own life, I guess I need to learn to accept His grace, and live well in the process.
Here is the list:
- Great aunt, a nun, tells me I am too smart to be a PT, that I should be a doctor. She later died of lung cancer, with spine mets. A non smoker. (Sorry PTs, her impression, not mine)
-Mom having LCIS (got the 1988 path report yesterday from her FP) at 48, and electing to do bpm, and thriving afterward. She is being very supportive now. -progressive aunt with bc in her 40's, opting for breast sparing procedure, having a recurrence, and raising a red flag.
- me working in a steroid research lab during and after college. One of my jobs was to do RFLP (restriction fragment length polymorphism) DNA testing on mouse tails. (Turns out my mutation, C61G is the only one that they test for with that procedure. May be why the turn around time was so short for me. )
- sister diagnosed with melanoma on her face, age 39. All clear since.
- my cousin's hs(high school) friend and my hs friend with bc (breast cancer) in 2005. And me ending up riding a bike 150 miles, major torture, to support her during chemo. Unfortunately I was so out of shape she had to wait for me.
-cousin getting her mom to test. (cousin is negative and her three girls don't have to worry.)
- good friend diagnosed with metastatic kidney CA. New oral chemo agents. Hospitalized May through July and 2 weeks in November. Doing well 20months out.
- another friend with bc in 2006
-My paternal aunt being very proactive regarding sharing her BRCA1 + status with family. As it was, it took this very interested physician 9 months to get my willing father tested.
-friend getting her bpm in 2 weeks,
-grandma, at 92, pleasantly demented, keeps asking why the lord has not taken her home yet. Not sure I will be able to explain to her, why her family still needs her here, to get us all through testing and hard decisions. (In my spaciest moment of the week, I was able to get her falling on the floor laughing on Saturday. I picked her up at her nursing home, took her to McDonalds, ordered and then reached for my wallet. Not there. Oops. Had to cancel order, hold grandma up while she was laughing and stumbling across the parking lot, and then took her to my house for dinner 20 miles away. ) Even without her memory Grandma holds the family together. She tested negative.
- Young colleague struggling with an ovca family.
- Another colleague's mom starting chemo for ovca.
- 2 colleagues diagnosed with pancreatic CA in past 6 months.
- cousin called after my GC appt. While in the hospital waiting for her mom's skin graft, met a high school acquaintance waiting to get her chemo port for ovca at age 36.
- study that shows that in the Ashkenazi population, being thin as a teen and exercising as a teen help delay the hereditary cancers. Mom did not believe in sweets and sugary snacks, so my brothers and sisters and I were all bean poles into college. All 14 of us cousins (including 8 girls. inherited grandpa's interest in sports, and played through high school and beyond. 2 ruggers, 3 bicyclists, and 3 marathoners in our gang.
Margaret, gradually getting a few of the loose threads in my head in order
I do believe in the randomness of the gene selection process at conception. I do feel blessed by the lord to have the chance to choose what to do to avoid getting cancer. I do not feel worthy.
I recognize the logic to Kushner's notion that God does not smite us and that God does not decide who to give and who to deny miracles to. I will hold on to the Catholic Christion notion of random miracles and continue to pray for them.
I am so pleasantly surprised to find so much strength in praying and feeling loved by Him.
Driving to work the next morning, this was the song on the radio.
Casting Crowns: Who I am
Not because of who I am But because of what You've done
Not because of what I've done But because of who
You are I am a flower quickly fading
Here today and gone tomorrow
A wave tossed in the ocean
A vapor in the wind
Still You hear me when I'm calling Lord,
You catch me when I'm falling
And You've told me who I am
I am Yours
Margaret, appreciating the lack of subtlety.
The suprise of the situation is being replaced by the notion that it really is not random.
Hard to accept that God would intervene in so many ways to get me here, in time, I hope. Wondering why.
Hearing people say that there doesn't have to be a reason to receive God's Grace. Having a hard time accepting that. Wondering what the purpose is. Knowing that I can accept His grace and that I cannot earn it or make up for it, but wondering what the purpose is.
Having odd thoughts of an "Oh God" like scenario, except that I make a much more unlikely disciple than John Denver ever was.
I realize that there are some obvious things about me having BRCA mutation that make sense. As the oldest, I can set a good example for my cousins. (And I know Steve, that I have to put it out there, and let it sit for them to do with what they will)
As a bold person at my hospital, I can't help talk about my situation. So far, I am scaring one colleague, who knows she needs an ooph as soon as she is done having children. I have gotten the attention of a drug rep who needs to get tested, and a doc, who describes a family that sounds BRCA2+ to me, and who wants to learn about testing.
So, in addition to trying to save my own life, I guess I need to learn to accept His grace, and live well in the process.
Here is the list:
- Great aunt, a nun, tells me I am too smart to be a PT, that I should be a doctor. She later died of lung cancer, with spine mets. A non smoker. (Sorry PTs, her impression, not mine)
-Mom having LCIS (got the 1988 path report yesterday from her FP) at 48, and electing to do bpm, and thriving afterward. She is being very supportive now. -progressive aunt with bc in her 40's, opting for breast sparing procedure, having a recurrence, and raising a red flag.
- me working in a steroid research lab during and after college. One of my jobs was to do RFLP (restriction fragment length polymorphism) DNA testing on mouse tails. (Turns out my mutation, C61G is the only one that they test for with that procedure. May be why the turn around time was so short for me. )
- sister diagnosed with melanoma on her face, age 39. All clear since.
- my cousin's hs(high school) friend and my hs friend with bc (breast cancer) in 2005. And me ending up riding a bike 150 miles, major torture, to support her during chemo. Unfortunately I was so out of shape she had to wait for me.
-cousin getting her mom to test. (cousin is negative and her three girls don't have to worry.)
- good friend diagnosed with metastatic kidney CA. New oral chemo agents. Hospitalized May through July and 2 weeks in November. Doing well 20months out.
- another friend with bc in 2006
-My paternal aunt being very proactive regarding sharing her BRCA1 + status with family. As it was, it took this very interested physician 9 months to get my willing father tested.
-friend getting her bpm in 2 weeks,
-grandma, at 92, pleasantly demented, keeps asking why the lord has not taken her home yet. Not sure I will be able to explain to her, why her family still needs her here, to get us all through testing and hard decisions. (In my spaciest moment of the week, I was able to get her falling on the floor laughing on Saturday. I picked her up at her nursing home, took her to McDonalds, ordered and then reached for my wallet. Not there. Oops. Had to cancel order, hold grandma up while she was laughing and stumbling across the parking lot, and then took her to my house for dinner 20 miles away. ) Even without her memory Grandma holds the family together. She tested negative.
- Young colleague struggling with an ovca family.
- Another colleague's mom starting chemo for ovca.
- 2 colleagues diagnosed with pancreatic CA in past 6 months.
- cousin called after my GC appt. While in the hospital waiting for her mom's skin graft, met a high school acquaintance waiting to get her chemo port for ovca at age 36.
- study that shows that in the Ashkenazi population, being thin as a teen and exercising as a teen help delay the hereditary cancers. Mom did not believe in sweets and sugary snacks, so my brothers and sisters and I were all bean poles into college. All 14 of us cousins (including 8 girls. inherited grandpa's interest in sports, and played through high school and beyond. 2 ruggers, 3 bicyclists, and 3 marathoners in our gang.
Margaret, gradually getting a few of the loose threads in my head in order
I do believe in the randomness of the gene selection process at conception. I do feel blessed by the lord to have the chance to choose what to do to avoid getting cancer. I do not feel worthy.
I recognize the logic to Kushner's notion that God does not smite us and that God does not decide who to give and who to deny miracles to. I will hold on to the Catholic Christion notion of random miracles and continue to pray for them.
I am so pleasantly surprised to find so much strength in praying and feeling loved by Him.
Driving to work the next morning, this was the song on the radio.
Casting Crowns: Who I am
Not because of who I am But because of what You've done
Not because of what I've done But because of who
You are I am a flower quickly fading
Here today and gone tomorrow
A wave tossed in the ocean
A vapor in the wind
Still You hear me when I'm calling Lord,
You catch me when I'm falling
And You've told me who I am
I am Yours
Margaret, appreciating the lack of subtlety.
March 17th FORCE post, Genetics Counselor Appt.
Hello all. Was incredibly nervous heading into the genetics counselor meeting, despite knowing much of what would be said. Genetics counselor was nice, and helpful. A moment of panic, as I was lead into a normal exam room. I think I would have freaked out a little if I had to gown up for the GC (genetics counselor )appt. Definitely did not fit my vision of a consultation in an academic office across her desk.
Oh well. We did still trade articles. Gave me the spiel about all of my "bad" conservative options. I had not been aware of how little use tamoxifen was for BRCA1 bc(breast cancer) prevention. She made it sound like only 1/3 or less reduction in BC risk, as more of the tumors end up being estrogen receptor negative. Agreed that I am probably too old to get much bc prevention benefit by having ovaries out.
All ( GC, oncologist, and resident) seemed relieved that I was opting for surgical risk reduction. Optimistic news about the gyn onc doing supracervical hysterectomy through the laparoscope. They seemed to agree that no recon fits with my goal of being off work as little as possible. No funny looks. PS appt was briefly offered, but not pushed.
The doc was quite interested in my history of already having a colon polyp removed. I am due for repeat colonoscopy in Sept. (great, one more thing to stress over. Stats are ambivalent about BRCA1 and colon cancer. I guess the stats don't matter that much as a gal with a polyp at 40) My gastroenterologist is praying for me.
The packet of info include several FORCE newsletters and the flyer for the conference. Whitney will be going to the FORCE conference.
Good info about having brothers start high risk prostate screening at 40 instead of 50.
So weird being a patient. So nice to walk into the Breast Center without cancer. Very motivating to keep it that way.
So, it does feel more real, having the folks who know confirm that my research and my FP(family practice doc) and my Gyn are all correct. Sucks to be right. (how could I not be with such good info and advice from the FORCE site)
Arrived at work yesterday to find an article from my local Gyn about ovca (ovarian cancer) in BRCA carriers. Not sure what his point is. I guess, a gentle reminder not to take too long to get mine out. I messaged him back about my concerns regarding BRCA pathology protocol and occult ovca found at rr ooph (risk reduction oophorectomy - ovarian resection). No response yet. Got an email last night from my proactive cousin, urging me to get my ooph soon. While waiting for her mom's skin graft, she got to sit next to a different high school acquaintance who at 36 was alone in the waiting room, ready to get her chemo port in for treatment of ovarian ca.
After listening to my biological clock wind down for so many years, who knew that it was the switch for tiny internal time bombs.
Grieving the impending loss of my fertility, even though I have been deciding for 5 years that a child would not fit into the life that I had, and not willing or able to change the situation enough to make it work.
So what else is going on:
1. still struggling with a challenging "presumed" metastatic bc patient electing not to clarify her dx or take chemo.
2. bought my luminaries for the local Relay for Life event. Scheduled May 18-19. I bought 8, but realized that I forgot one for my high school friend in the Ukraine and my uncle who died of throat CA. 2 years ago it was a shock to count up the relatives with cancer. Now it just raises the curiosity level. No ovca thankfully.
3. Enjoying reading and posting obsessively on the FORCE site.
4. PT. felt like my therapist was trying to kill me yesterday. Turns out my round shouldered posture has been hiding how prominent my breasts actually are. Feels very weird to be improving posture, making them more prominent right before I get them cut off. Trying not to feel guilty for indulging myself in the magical PTs services for a sore neck at a time like this. I know it will help in the long run.
5. obsessively watching my email. Surprised at how few responses I got from my first round of mass emailing people. Very appreciative of the ones who have written back. It makes a great distraction for me. Helps me feel connected.
6. Fretting about my youngest brother, who is usually quite communicative, but who has been too busy to finish a phone call, and has not emailed. I hope he is just busy.
7. Enjoying my sister's blog site with new pictures of her daughters. She is perplexed about how the love of princesses and the color pink is transmitted as both mom and dad have worked hard not to encourage it. Her pre-school is the most progressive ever, with rules against comercial toys, policies against passing on gender stereotyping etc. It was painful for Aunt Margaret to have to buy a disney princess Leapfrog book for her. (And some of the messages in it are horrible. Ariel asking her husband if she can ever go back and visit her family. Yuck.) No offense to the princesses on this site.
8. Being interrupted from typing this post by the 4 deer grazing in my back yard. So nice to get absorbed in the moment. They stayed 10 minutes. Fun to indulge my naturalist tendencies.
9. Told my first menopause joke.
10. Found a new way to make my patients cry. One, who is quite well connected to the hospital gossip network asked me straight out what was going on and then broke out in tears and hugged me. (usually I make them cry by being too blunt or by being a mean pain doc)
11. Practicing golf at the indoor range. Focus, being in the moment. Emotions leaking through. Grieving the loss of part of the golf season. Inspired to be back by August to take on one of my nemesis courses for the Mich women's golf assn state tournament. Last time we played there I think I shot 113, with a 20 handicap.
12. Feeling blessed and amazed by the sequence of events that got me here and able to be saving my life. I do hear you ladies, who remind me that there does not have to be a reason for God to bless me with this chance. Hard to not feel some responsibility from it. More on this in a separate post.
13. Gradually feeling more accepting that BRCA1 + and rr(risk reduction) surgeries are my fate for this spring. When speaking with my therapist, I told her that I can't believe this is happening to me, but can't really imagine who else it should happen to.
14. Feeling very chic. Oprah, Self and Cosmo in the same month. Thankfully the cosmo article is online at BeBrightPink so I do not have to undergo the trauma of buying all three magazines for the first time ever.
15. Wondering whether I should be writing a book. Revising my plans for the blog. Wishing that I was able to take advantage of the current climate and have something ready soon.
Oh well. We did still trade articles. Gave me the spiel about all of my "bad" conservative options. I had not been aware of how little use tamoxifen was for BRCA1 bc(breast cancer) prevention. She made it sound like only 1/3 or less reduction in BC risk, as more of the tumors end up being estrogen receptor negative. Agreed that I am probably too old to get much bc prevention benefit by having ovaries out.
All ( GC, oncologist, and resident) seemed relieved that I was opting for surgical risk reduction. Optimistic news about the gyn onc doing supracervical hysterectomy through the laparoscope. They seemed to agree that no recon fits with my goal of being off work as little as possible. No funny looks. PS appt was briefly offered, but not pushed.
The doc was quite interested in my history of already having a colon polyp removed. I am due for repeat colonoscopy in Sept. (great, one more thing to stress over. Stats are ambivalent about BRCA1 and colon cancer. I guess the stats don't matter that much as a gal with a polyp at 40) My gastroenterologist is praying for me.
The packet of info include several FORCE newsletters and the flyer for the conference. Whitney will be going to the FORCE conference.
Good info about having brothers start high risk prostate screening at 40 instead of 50.
So weird being a patient. So nice to walk into the Breast Center without cancer. Very motivating to keep it that way.
So, it does feel more real, having the folks who know confirm that my research and my FP(family practice doc) and my Gyn are all correct. Sucks to be right. (how could I not be with such good info and advice from the FORCE site)
Arrived at work yesterday to find an article from my local Gyn about ovca (ovarian cancer) in BRCA carriers. Not sure what his point is. I guess, a gentle reminder not to take too long to get mine out. I messaged him back about my concerns regarding BRCA pathology protocol and occult ovca found at rr ooph (risk reduction oophorectomy - ovarian resection). No response yet. Got an email last night from my proactive cousin, urging me to get my ooph soon. While waiting for her mom's skin graft, she got to sit next to a different high school acquaintance who at 36 was alone in the waiting room, ready to get her chemo port in for treatment of ovarian ca.
After listening to my biological clock wind down for so many years, who knew that it was the switch for tiny internal time bombs.
Grieving the impending loss of my fertility, even though I have been deciding for 5 years that a child would not fit into the life that I had, and not willing or able to change the situation enough to make it work.
So what else is going on:
1. still struggling with a challenging "presumed" metastatic bc patient electing not to clarify her dx or take chemo.
2. bought my luminaries for the local Relay for Life event. Scheduled May 18-19. I bought 8, but realized that I forgot one for my high school friend in the Ukraine and my uncle who died of throat CA. 2 years ago it was a shock to count up the relatives with cancer. Now it just raises the curiosity level. No ovca thankfully.
3. Enjoying reading and posting obsessively on the FORCE site.
4. PT. felt like my therapist was trying to kill me yesterday. Turns out my round shouldered posture has been hiding how prominent my breasts actually are. Feels very weird to be improving posture, making them more prominent right before I get them cut off. Trying not to feel guilty for indulging myself in the magical PTs services for a sore neck at a time like this. I know it will help in the long run.
5. obsessively watching my email. Surprised at how few responses I got from my first round of mass emailing people. Very appreciative of the ones who have written back. It makes a great distraction for me. Helps me feel connected.
6. Fretting about my youngest brother, who is usually quite communicative, but who has been too busy to finish a phone call, and has not emailed. I hope he is just busy.
7. Enjoying my sister's blog site with new pictures of her daughters. She is perplexed about how the love of princesses and the color pink is transmitted as both mom and dad have worked hard not to encourage it. Her pre-school is the most progressive ever, with rules against comercial toys, policies against passing on gender stereotyping etc. It was painful for Aunt Margaret to have to buy a disney princess Leapfrog book for her. (And some of the messages in it are horrible. Ariel asking her husband if she can ever go back and visit her family. Yuck.) No offense to the princesses on this site.
8. Being interrupted from typing this post by the 4 deer grazing in my back yard. So nice to get absorbed in the moment. They stayed 10 minutes. Fun to indulge my naturalist tendencies.
9. Told my first menopause joke.
10. Found a new way to make my patients cry. One, who is quite well connected to the hospital gossip network asked me straight out what was going on and then broke out in tears and hugged me. (usually I make them cry by being too blunt or by being a mean pain doc)
11. Practicing golf at the indoor range. Focus, being in the moment. Emotions leaking through. Grieving the loss of part of the golf season. Inspired to be back by August to take on one of my nemesis courses for the Mich women's golf assn state tournament. Last time we played there I think I shot 113, with a 20 handicap.
12. Feeling blessed and amazed by the sequence of events that got me here and able to be saving my life. I do hear you ladies, who remind me that there does not have to be a reason for God to bless me with this chance. Hard to not feel some responsibility from it. More on this in a separate post.
13. Gradually feeling more accepting that BRCA1 + and rr(risk reduction) surgeries are my fate for this spring. When speaking with my therapist, I told her that I can't believe this is happening to me, but can't really imagine who else it should happen to.
14. Feeling very chic. Oprah, Self and Cosmo in the same month. Thankfully the cosmo article is online at BeBrightPink so I do not have to undergo the trauma of buying all three magazines for the first time ever.
15. Wondering whether I should be writing a book. Revising my plans for the blog. Wishing that I was able to take advantage of the current climate and have something ready soon.
March 8th Post I know exactly what I would do...
if it were happening to me.
Oh, I forgot, it is happening to me.
Slowly the realization, that BRCA1+ is my life at age 43.
This means being distracted from my exercises in PT, trying not to cry, thinking about how hard it will be to come back after surgery and have my therapist and I start over to get everything back in order. The reality of having my chest cut open setting in a little, when I was supposed to be learning to depress my scapula, to use my muscles right. Would I come back to work with her or want to start over with a stranger? Thankful that my currently achy neck means that I get to see her and get things in order first. Probably will help in the long run. And her brand of care is much needed now.
Holding my breath, walking on to the hospital ward, wondering which of my friends will be there, and whether they have read my email. The absurdity that my social life will evolve into talking about my planned surgeries on the ward with friends, and acquaintances and new staff members at various stages of knowledge about me and my situation, and my risks.
Waiting for the emotions to crash in and interrupt my existence, hopefully not noticeably limiting my work functions.
Relying heavily on this site, and emails from friends and acquaintances for support, acknowledgement of my situation, and distraction from the inner dialogues.
Feeling bad for changing roles. I am supposed to be steady and reliable, not obsessed, distant, erratic.
Leaning on on my office staff to keep my spirits up and put up with my ramblings.
The sudden realization that, in the process of sharing, I am scaring my colleagues and friends. I guess that is what education is about. Look at me, with a pretesting 8.5% risk of having a breast cancer gene mutation, but having one anyway.
The frustration of needing to see my therapist every week, and knowing that I am going to have to work on things.
The heightened awareness of how cancer is all around me. 2 colleagues with pancreatic CA, diagnosed in the past 6 months, my pharmacist's mother starting chemo this week for ovarian CA. A colleague struggling with a big family hx of ovca (ovarian cancer.)
Waiting to wait in doctor's waiting rooms, learning how to be a patient.
The pleasant distraction of renewing a friendship with a paraplegic friend, who can help without asking how I am or talking about surgery or BRCA or anything.
Learning about my body, and about my mind, at a time when subtleties like metabolism and posture seem inconsequential, but subtleties like adrenaline, and mindfulness and meditation, may be the keys to getting through.
Margaret, who is willing to try to get to the essence of the situation, but only on my terms.
So nice to get feedback from the FORCE folks, challenging my assumptions, praising my writing, and helping me find myself in this new phase of life.
Oh, I forgot, it is happening to me.
Slowly the realization, that BRCA1+ is my life at age 43.
This means being distracted from my exercises in PT, trying not to cry, thinking about how hard it will be to come back after surgery and have my therapist and I start over to get everything back in order. The reality of having my chest cut open setting in a little, when I was supposed to be learning to depress my scapula, to use my muscles right. Would I come back to work with her or want to start over with a stranger? Thankful that my currently achy neck means that I get to see her and get things in order first. Probably will help in the long run. And her brand of care is much needed now.
Holding my breath, walking on to the hospital ward, wondering which of my friends will be there, and whether they have read my email. The absurdity that my social life will evolve into talking about my planned surgeries on the ward with friends, and acquaintances and new staff members at various stages of knowledge about me and my situation, and my risks.
Waiting for the emotions to crash in and interrupt my existence, hopefully not noticeably limiting my work functions.
Relying heavily on this site, and emails from friends and acquaintances for support, acknowledgement of my situation, and distraction from the inner dialogues.
Feeling bad for changing roles. I am supposed to be steady and reliable, not obsessed, distant, erratic.
Leaning on on my office staff to keep my spirits up and put up with my ramblings.
The sudden realization that, in the process of sharing, I am scaring my colleagues and friends. I guess that is what education is about. Look at me, with a pretesting 8.5% risk of having a breast cancer gene mutation, but having one anyway.
The frustration of needing to see my therapist every week, and knowing that I am going to have to work on things.
The heightened awareness of how cancer is all around me. 2 colleagues with pancreatic CA, diagnosed in the past 6 months, my pharmacist's mother starting chemo this week for ovarian CA. A colleague struggling with a big family hx of ovca (ovarian cancer.)
Waiting to wait in doctor's waiting rooms, learning how to be a patient.
The pleasant distraction of renewing a friendship with a paraplegic friend, who can help without asking how I am or talking about surgery or BRCA or anything.
Learning about my body, and about my mind, at a time when subtleties like metabolism and posture seem inconsequential, but subtleties like adrenaline, and mindfulness and meditation, may be the keys to getting through.
Margaret, who is willing to try to get to the essence of the situation, but only on my terms.
So nice to get feedback from the FORCE folks, challenging my assumptions, praising my writing, and helping me find myself in this new phase of life.
Tuesday, March 06, 2007
Now What?
The shock of my diagnosis is slowly lifting. I have told family. I have told bosses. Started telling friends and associates. Not yet patients.
I have a genetics counselor appointment on the 15th, more than a week away. 3 surgeon appointments on the 26 through the 28th. Way too far from now.
I have had a few concerned looks and many supportive emails. A few surprised looks from people. I have explained plans to good friends and new coworkers. In general, not as bad as expected.
I have mailed packets of information to brothers, sisters, uncles and attempted to email the same information to 2 of dad's cousins. I cheated and did not use the statistics, sparing me the nausea and the recipients the shock. I have circulated the blog address so all can delve as deeply as they like.
I have been informed that at some point, I actually need to feel what is going on. Not sure I want to do that yet. What feelings I have had so far come in shades and flavors I have not experienced before and am a little reluctant to learn about.
So... I surf the internet, and read the posts on the FORCE site. I have bought silicone bracelets in teal to match my pink one. Procrastinate work and stare into space.
Found an interesting series on my situation through another woman's eyes, on Slate. Passed a good hour doing that. http://www.slate.com/id/2102171/entry/2102173/
Only 188 hours before my meeting with the genetic counselor, who I am afraid will not tell me that I miscalculated somewhere and do not have to worry about this syndrome, or my choices.
I have a genetics counselor appointment on the 15th, more than a week away. 3 surgeon appointments on the 26 through the 28th. Way too far from now.
I have had a few concerned looks and many supportive emails. A few surprised looks from people. I have explained plans to good friends and new coworkers. In general, not as bad as expected.
I have mailed packets of information to brothers, sisters, uncles and attempted to email the same information to 2 of dad's cousins. I cheated and did not use the statistics, sparing me the nausea and the recipients the shock. I have circulated the blog address so all can delve as deeply as they like.
I have been informed that at some point, I actually need to feel what is going on. Not sure I want to do that yet. What feelings I have had so far come in shades and flavors I have not experienced before and am a little reluctant to learn about.
So... I surf the internet, and read the posts on the FORCE site. I have bought silicone bracelets in teal to match my pink one. Procrastinate work and stare into space.
Found an interesting series on my situation through another woman's eyes, on Slate. Passed a good hour doing that. http://www.slate.com/id/2102171/entry/2102173/
Only 188 hours before my meeting with the genetic counselor, who I am afraid will not tell me that I miscalculated somewhere and do not have to worry about this syndrome, or my choices.
Thursday, March 01, 2007
Test is positive - at least the waiting is over
Got my test results today. Even though I had sort of expected them to be positive, was a little stunned by the reading the test.
Have been busy telling people. Partly to get enough people told before the shock of it wore off. So... on to the next steps.
And all of the questions that I have been refraining from entertaining until I knew one way or the other.
Had my mamm and TVU (transvaginal ultrasound )today. No call backs, so that is a good sign. Will get CA-125 (blood test which gets elevated in ovarian cancer) tomorrow. Feeling ok about being cancer free and not too late to be in the risk reduction category. DSO was supportive, despite me telling her by phone. I knew I could not make it all day without telling anyone and did not want her to find out from anyone else. Mom and Dad were also supportive, despite being distant on the subject before. Bosses and co-workers are great so far. I anticipate more shock and disbelief at my risk reduction strategies as I go on. Stumbled on to a very nice GC (genetic counselor) at a hospital about 2 hours away, but near DSO's family. And at the center where our friend is having her surgery in a few weeks. They have a BRCA clinic at Beaumont , and GYN/Onc, and a dedicated breast surgeon. Should pass muster as far as seeking experts. Appointment with Whitney Ducaine, CGC on 3/15 and encouraged to set up appointments with the surgeons before then. Anxious to move on to action.
So, for the questions? To hyst or not to hyst? I have no known uterine problems, no cancer anywhere, I hope? Doubt that I will want to take steroids, or that my FP would give them to me. BPM (Bilateral prophylactic mastectomies )and oophorectomies together or separately? I have never been off work for even 2 weeks the past 11 years. Practice pretty much shuts down when I am not working. Relatively healthy, I think I have a high pain tolerance. (niece has congenital indifference to pain and feels none. )
How long after BPM can I push hard on my golf cleat tool to change DSO golf spikes? How long to golf? How soon to come back to work? Not planning recon. Will I be able to wear those golf shirts that are too small for my 42Ds now. if I go without prostheses? (Mom warns that I will be pear shaped. Also says that people are either too kind to say anything or don't notice. She had BPM 20 years ago for LCIS and estimates that she wears a bra with prosthesis or socks a couple times per year. I generally care less about what people think about how I dress than she does. ) Who to tell and how? I am considering sending out a mass email at work. There are 10 or so nurses, several administrators, and 10 or so docs that I am close enough with to definitely tell, and will be talking about it( maybe once or twice?:J) in front of many others, as my main social interactions with these folks are on the wards during rounds. Knowing that some will consider a mass email weird. Knowing that my absence for 3 weeks will definitely be missed, and after, the absence of my breasts will definitely be noticed.
Also considering letting myself be a news story in the local paper. Has anyone done that? It just seems so random and senseless, that the teacher in me wants to find some meaning. This all makes DSO very nervous.
Good things about the challenge of being BRCA1 positive
1. Way better than having cancer.
2. Life lessons
3. No way for my uncles and cousins to ignore the potential impact of our family genetic issue.
4. Get to be a real live amazon.
5. Don't have to worry of mom's LCIS makes me at higher risk.
6. Good reason to reach out to old friends and make new friends.
7. Excellent reason to re-prioritize my life.
8. Head start on the new weight loss program.
9. Learning what it is like to be a patient.
Bad things about having ghe challenge of being BRCA1 positive
1. Surgeries
2. Funny looks from people who think I am being radical
3. Worry about getting cancer before I am done reducing my risk. (and after, I guess)
4. Stress for me, co-workers, family, DSO etc.
5. Time off work, away from golf, etc.
6. Having to be a patient.
That is enough for now.
Have been busy telling people. Partly to get enough people told before the shock of it wore off. So... on to the next steps.
And all of the questions that I have been refraining from entertaining until I knew one way or the other.
Had my mamm and TVU (transvaginal ultrasound )today. No call backs, so that is a good sign. Will get CA-125 (blood test which gets elevated in ovarian cancer) tomorrow. Feeling ok about being cancer free and not too late to be in the risk reduction category. DSO was supportive, despite me telling her by phone. I knew I could not make it all day without telling anyone and did not want her to find out from anyone else. Mom and Dad were also supportive, despite being distant on the subject before. Bosses and co-workers are great so far. I anticipate more shock and disbelief at my risk reduction strategies as I go on. Stumbled on to a very nice GC (genetic counselor) at a hospital about 2 hours away, but near DSO's family. And at the center where our friend is having her surgery in a few weeks. They have a BRCA clinic at Beaumont , and GYN/Onc, and a dedicated breast surgeon. Should pass muster as far as seeking experts. Appointment with Whitney Ducaine, CGC on 3/15 and encouraged to set up appointments with the surgeons before then. Anxious to move on to action.
So, for the questions? To hyst or not to hyst? I have no known uterine problems, no cancer anywhere, I hope? Doubt that I will want to take steroids, or that my FP would give them to me. BPM (Bilateral prophylactic mastectomies )and oophorectomies together or separately? I have never been off work for even 2 weeks the past 11 years. Practice pretty much shuts down when I am not working. Relatively healthy, I think I have a high pain tolerance. (niece has congenital indifference to pain and feels none. )
How long after BPM can I push hard on my golf cleat tool to change DSO golf spikes? How long to golf? How soon to come back to work? Not planning recon. Will I be able to wear those golf shirts that are too small for my 42Ds now. if I go without prostheses? (Mom warns that I will be pear shaped. Also says that people are either too kind to say anything or don't notice. She had BPM 20 years ago for LCIS and estimates that she wears a bra with prosthesis or socks a couple times per year. I generally care less about what people think about how I dress than she does. ) Who to tell and how? I am considering sending out a mass email at work. There are 10 or so nurses, several administrators, and 10 or so docs that I am close enough with to definitely tell, and will be talking about it( maybe once or twice?:J) in front of many others, as my main social interactions with these folks are on the wards during rounds. Knowing that some will consider a mass email weird. Knowing that my absence for 3 weeks will definitely be missed, and after, the absence of my breasts will definitely be noticed.
Also considering letting myself be a news story in the local paper. Has anyone done that? It just seems so random and senseless, that the teacher in me wants to find some meaning. This all makes DSO very nervous.
Good things about the challenge of being BRCA1 positive
1. Way better than having cancer.
2. Life lessons
3. No way for my uncles and cousins to ignore the potential impact of our family genetic issue.
4. Get to be a real live amazon.
5. Don't have to worry of mom's LCIS makes me at higher risk.
6. Good reason to reach out to old friends and make new friends.
7. Excellent reason to re-prioritize my life.
8. Head start on the new weight loss program.
9. Learning what it is like to be a patient.
Bad things about having ghe challenge of being BRCA1 positive
1. Surgeries
2. Funny looks from people who think I am being radical
3. Worry about getting cancer before I am done reducing my risk. (and after, I guess)
4. Stress for me, co-workers, family, DSO etc.
5. Time off work, away from golf, etc.
6. Having to be a patient.
That is enough for now.
Subscribe to:
Posts (Atom)