Happy New Year! I can't decide how I feel about this new year. Am I happy to see 2014 come to an end? Possibly. Am I looking forward to 2015? Some of it. I suppose in the end it will be a year like any other, with ups and downs and everything in between. Even though some of it will be crappy, I don't expect that will diminish the good parts like my kiddos and the joy they bring to each day (except the moments when they make me feel a little crazy... may those moments be few and far between!). I'm sure I will continue to be overwhelmed with gratitude for my family and friends.
The dates in my appointment book are starting to rapidly fill in again so here is an update for anyone interested...
Surgery is scheduled for January 8th. At my consultation last week with Dr. Livingston she confirmed that I am still a good candidate for a breast conserving surgery, more commonly known as a lumpectomy at which time she will also do the sentinel node biopsy. I didn't really have a lot of questions because it seemed pretty straight forward. It will be an outpatient procedure so I shouldn't have to spend the night in the hospital or deal with drains or anything like that. Dr. Livingston said to allow 1-2 weeks before returning to work.
So the hospitals (at least most the big ones I think) have this pretty cool new system called "My Charts" where you can access your medical records with that facility. It keeps track of appointments, test results, medications, and you can use a message feature to communicate with your doctors. It's really pretty cool. My "My Chart" actually has information about blood tests I've had in the past when I had my emergency surgery in 2010. Lucky for me that's the only other time I've done anything besides have a baby in a hospital!
Yesterday I got an email that I had new messages in my My Charts so I logged in. Come to find out I actually have to go have something done on January 7th. No one had really mentioned that... not that it really matters.
Apparently that is when they will inject my tumor (seriously, I have a tumor, I cannot get used to saying that!!) with a dye which is part of the sentinel node biopsy. The dye will travel to the lymph system and that is how they identify the sentinel (first) node(s) which will be removed for biopsy. I've since talked to my nurse who gave me that information, although I was in the process of getting in for an eye exam so I couldn't ask a lot of questions... she is sending me paperwork about all this and I'm sure I'll call her with some more questions when that gets here.
Then on the 8th prior to the surgery they will perform a "wire placement" (yet another thing no one had mentioned to me). I googled what that might mean because it's not anything I've come across in reading or talking to people about this procedure. Apparently they put a wire into your boob/tumor which then helps guide the surgeon to the right spot.
Today a friendly lady from MSTI called me to set up appointments with more doctors. My surgeon had referrals sent over after the appoitment last week. On January 16th I will meet my new medical oncologist Dr. Bridges and then on January 26th I will meet my radiation oncologist Dr. Kuhn.
Thanks to "My Chart" I also think I might have an appointment with someone on January 19th too, but it's not a doctor I have talked to or even heard of... if I don't get a call from a human about that one on Friday I guess I will ask my nurse navigator who/what that appointment is about.
It is good to feel like things are moving along and have a plan in place. Even though I can't really forget for very long that this is all happening, all the waiting has made it seem less real the past few weeks. Now it's starting to feel real again, or surreal might be a better word.
Wednesday, December 31, 2014
Monday, December 22, 2014
This blog needed some pictures
And I actually have a few. They are from back in November when everything started. There really aren't a lot of photo opportunities related to this subject but of course we found a few things to help document everything.
Driving through the snowstorm for an MRI. Thanks again to Beth for doing the driving!
Driving through the snowstorm for an MRI. Thanks again to Beth for doing the driving!
The slogan for that day was that "cancer doesn't get a snow day" because all the schools were closed.
These scrubs made me feel skinny!
Beth and Stephanie made a surprise (well it wouldn't have been a surprise if I had checked my phone) visit that night after I found out there was another suspicious spot on the MRI (which as you know turned out to be ok). My friends really are the best!
It became clear very quickly that I needed a place to keep track of all my appointments and phone numbers and everything else... it seemed like more dates had appointments than not there for a while.
"Us exam breast." Juan thought this was funny because it kind of sounded like a caveman was performing the exams or at least in charge of the billing.
Monday, December 15, 2014
More Negative = Good
My BRCAplus panel came back with good news... no mutations in the five genes that were tested. When we met with the genetic counselor to go over the results on Friday she was sure to remind me that they only tested five (5) genes out of the 20,000 or so we humans have.
So who knows if one of the 19,995 others has contributed to my situation, but it's nice to know these five are ok. They actually can test up to 16 genes, but because I really don't have much family history of cancer on either side we decided that wasn't necessary. The counselor said I should follow-up with her in five years because they will have new technology by then, and there may be some new test that could benefit me.
So who knows, maybe it was the...
What's coming next for me... we have a final consultation with the surgeon on December 23rd and surgery penciled in for January 8th. Things didn't end up happening as fast as I thought they might when this all started! Now that we have all the various tests results back, I am comfortable with a breast conserving/lumpectomy surgery followed by radiation. I will make that final decision after talking with the doctor but unless something new comes to light this is the most likely path I will take.
Now that I know my surgery won't be until after Christmas I guess I have to finish my shopping and get ready to travel up to Tekoa to celebrate the holiday with the family!
So who knows if one of the 19,995 others has contributed to my situation, but it's nice to know these five are ok. They actually can test up to 16 genes, but because I really don't have much family history of cancer on either side we decided that wasn't necessary. The counselor said I should follow-up with her in five years because they will have new technology by then, and there may be some new test that could benefit me.
So who knows, maybe it was the...
- Sugar
- Diet soda
- Birth control pills
- Antiperspirant
- GMO chicken, corn, etc...
- Not eating organic
- Eating processed food
- Not exercising enough/running
- Acidic body
- Alcohol
- BPA
- BBQ
- Microwave
What's coming next for me... we have a final consultation with the surgeon on December 23rd and surgery penciled in for January 8th. Things didn't end up happening as fast as I thought they might when this all started! Now that we have all the various tests results back, I am comfortable with a breast conserving/lumpectomy surgery followed by radiation. I will make that final decision after talking with the doctor but unless something new comes to light this is the most likely path I will take.
Now that I know my surgery won't be until after Christmas I guess I have to finish my shopping and get ready to travel up to Tekoa to celebrate the holiday with the family!
Wednesday, December 3, 2014
BRCA2 Negative
One more small piece of the puzzle... yesterday my genetic counselor called to tell me that the results from my BRCA2 test came back negative. This was great news! (For me, but also my kids and my mom and various other family members.)
Because of my age (I am so young! Remember?) it is still recommended to test for a few other most common genetic mutations that can increase cancer risk. This means more waiting for results.
So they are now testing my blood sample for the BRCAPlus panel. This panel tests 5 genes. The BRCA2 is included in this panel so it will be retested because it's just part of the panel. The lab estimates results will be available between December 8th and 15th.
Because of my age (I am so young! Remember?) it is still recommended to test for a few other most common genetic mutations that can increase cancer risk. This means more waiting for results.
So they are now testing my blood sample for the BRCAPlus panel. This panel tests 5 genes. The BRCA2 is included in this panel so it will be retested because it's just part of the panel. The lab estimates results will be available between December 8th and 15th.
Thursday, November 27, 2014
Biopsy #2 Results
Good news! There were no cancer cells present in the biopsy I had on Monday. Yay!
I had decided I probably wasn't going to hear the results until next week so didn't take my phone with me when I went down to visit with Dawn and Aunt Peggy. I came home around 5 o'clock and had a message left at 4:30 of course! Thankfully Dr. Macey said she would be in the office until 6 and also left her cell phone number so I immediately called her back. I was pretty nervous when I called and had been trying to feel prepared to hear bad news.
I was so happy when she started the conversation with, "I have great news."
A pretty stark contrast to the previous results which started with, "Hi, this is Dr. X I have your biopsy results. Unfortunately there were cancer cells so we'll get you set up with a surgeon and an oncologist... and blah.... blah... receptors... blah.... blah... nurse.... blah.... blah... doctor... blah..." Basically I don't know what all was said because my heart was pounding so loud! Although I have to say Dr. X was fairly chipper in her delivery of that news. I wouldn't want that job. I still think Dr. Macey might have done a better job. Maybe in part because I had actually met her in person. I was glad she did this last biopsy and requested that she call me with the results if at all possible.
In the end it really doesn't matter because bad news is bad news... and thankfully good news is good news!
I had decided I probably wasn't going to hear the results until next week so didn't take my phone with me when I went down to visit with Dawn and Aunt Peggy. I came home around 5 o'clock and had a message left at 4:30 of course! Thankfully Dr. Macey said she would be in the office until 6 and also left her cell phone number so I immediately called her back. I was pretty nervous when I called and had been trying to feel prepared to hear bad news.
I was so happy when she started the conversation with, "I have great news."
A pretty stark contrast to the previous results which started with, "Hi, this is Dr. X I have your biopsy results. Unfortunately there were cancer cells so we'll get you set up with a surgeon and an oncologist... and blah.... blah... receptors... blah.... blah... nurse.... blah.... blah... doctor... blah..." Basically I don't know what all was said because my heart was pounding so loud! Although I have to say Dr. X was fairly chipper in her delivery of that news. I wouldn't want that job. I still think Dr. Macey might have done a better job. Maybe in part because I had actually met her in person. I was glad she did this last biopsy and requested that she call me with the results if at all possible.
In the end it really doesn't matter because bad news is bad news... and thankfully good news is good news!
Tuesday, November 25, 2014
Biopsy #2... check
Yesterday was my appointment to have an ultrasound with possible biopsy on the second spot that showed up on the MRI. It went well.
At first they were not finding it on the ultrasound. I think the first ultrasound tech was pretty new because there was a second tech (possibly a mentor?) who I remember from a previous visit, she observed the first person and did a second pass herself.
Thankfully she was able to locate something that corresponded with what they could see on the MRI. It was biopsy-worthy (which I expected) so the doctor came in and did that. It went really smoothly just like the first one. I just kept my eyes closed because it's a little disconcerting to watch a needle go inside your body on an ultrasound screen (although strangely fascinating at the same time). I couldn't feel it of course because it was numb but I just can't watch.
The doctor took three "beautiful" samples and said hopefully she will be able to call me with results before Thanksgiving. I wish I would have verified that it would be her (not a different doctor) who will call me because I would prefer to talk to her and not someone else.
Lesson of the Day... Having a good ultrasound tech is really important! The doctor even commended them (although I know it was really the one) after the procedure to say what a good job they did to locate this suspicious spot because it was not an easy thing to find. If she had been unable to locate it with ultrasound I may have had to do an MRI-guided biopsy, which they said is difficult for both the medical team and the patient. Or what if a tech didn't pick up an initial suspicious spot... the bad cells could just keep growing!
Of course having a good doctor(s) is also really important. I can't tell you how many times over the last couple weeks I've thought... what if Dr. Fealko hadn't felt that little bump at my check-up? I wouldn't be going through all this... yet... and when I did it would be worse.
Thankfully she was able to locate something that corresponded with what they could see on the MRI. It was biopsy-worthy (which I expected) so the doctor came in and did that. It went really smoothly just like the first one. I just kept my eyes closed because it's a little disconcerting to watch a needle go inside your body on an ultrasound screen (although strangely fascinating at the same time). I couldn't feel it of course because it was numb but I just can't watch.
The doctor took three "beautiful" samples and said hopefully she will be able to call me with results before Thanksgiving. I wish I would have verified that it would be her (not a different doctor) who will call me because I would prefer to talk to her and not someone else.
Lesson of the Day... Having a good ultrasound tech is really important! The doctor even commended them (although I know it was really the one) after the procedure to say what a good job they did to locate this suspicious spot because it was not an easy thing to find. If she had been unable to locate it with ultrasound I may have had to do an MRI-guided biopsy, which they said is difficult for both the medical team and the patient. Or what if a tech didn't pick up an initial suspicious spot... the bad cells could just keep growing!
Of course having a good doctor(s) is also really important. I can't tell you how many times over the last couple weeks I've thought... what if Dr. Fealko hadn't felt that little bump at my check-up? I wouldn't be going through all this... yet... and when I did it would be worse.
Saturday, November 22, 2014
Another Week...
#1 Sorry to anyone who took the time to create a login on the caringbridge site. I decided to move my updates to this location because I'm more familiar with the format. And in all honesty, I found it depressing to admit that I am qualified to actually have a caringbridge site. I feel much more comfortable here!
#2 Update...
On Monday, I met with a genetic counselor. My surgeon wanted me to do this because of my young* age. *(I keep trying to feel flattered when these medical people say, "You're so young.") But I have now learned that if you get breast cancer under age 50, let alone 40, then you are considered young.
The genetic counseling appointment was really interesting. She basically mapped out my pedigree (just a like show horse!). There is a small history of breast cancer in some wonderful younger women with whom I could share some genes, so it made sense to send some blood off to be tested. A sample has been sent to see if I test positive or negative for the BRCA2 genetic mutation... I should find out the results early next week. The results of the test will help determine how aggressive I want to be with treatment. If the result of this test is negative, I may do some additional testing... we'll just wait and see about that.
Then on Tuesday, I had a consultation with my surgeon. We discussed my surgical and subsequent treatment options. I asked her a ton of questions, but of course I have thought of a few more to ask next time. I liked her very much and feel very comfortable in her hands! We didn't make any final decisions as I want to wait until I see the results of the genetic testing. Also she said it would be good to have a biopsy on the second spot that showed up on the MRI prior to any surgery.
I spent much of this week working on that... when the scheduler called me the next day to make the appointment, they did not have an opening until December 11th! That seems like a long time away and had me feeling a little frustrated after things moving so fast in the past week! I called my surgeon's office immediately to let them know and they agreed that it would be better if I could have it done sooner. Vicki, my surgeon's nurse checked to see if I could at least get on a waiting list... no they don't have a waiting list at the imaging center, but the patient can call to see if we have any cancellations... So I started doing that a couple times a day.
Then my nurse navigator, Renee, got in touch with me about it. She and her supervisor said that was pretty ridiculous to ask a diagnosed patient to wait that long, and so they went to bat for me. They were successful and late yesterday afternoon I got a call from someone in scheduling and they were going to find a way to work me in by doing some manual adjustments in the scheduling system... there was an opening on Monday, November 24 at 2 o'clock, was I available? Heck yes! So, that's what I get to do on Monday.
#2 Update...
On Monday, I met with a genetic counselor. My surgeon wanted me to do this because of my young* age. *(I keep trying to feel flattered when these medical people say, "You're so young.") But I have now learned that if you get breast cancer under age 50, let alone 40, then you are considered young.
The genetic counseling appointment was really interesting. She basically mapped out my pedigree (just a like show horse!). There is a small history of breast cancer in some wonderful younger women with whom I could share some genes, so it made sense to send some blood off to be tested. A sample has been sent to see if I test positive or negative for the BRCA2 genetic mutation... I should find out the results early next week. The results of the test will help determine how aggressive I want to be with treatment. If the result of this test is negative, I may do some additional testing... we'll just wait and see about that.
Then on Tuesday, I had a consultation with my surgeon. We discussed my surgical and subsequent treatment options. I asked her a ton of questions, but of course I have thought of a few more to ask next time. I liked her very much and feel very comfortable in her hands! We didn't make any final decisions as I want to wait until I see the results of the genetic testing. Also she said it would be good to have a biopsy on the second spot that showed up on the MRI prior to any surgery.
I spent much of this week working on that... when the scheduler called me the next day to make the appointment, they did not have an opening until December 11th! That seems like a long time away and had me feeling a little frustrated after things moving so fast in the past week! I called my surgeon's office immediately to let them know and they agreed that it would be better if I could have it done sooner. Vicki, my surgeon's nurse checked to see if I could at least get on a waiting list... no they don't have a waiting list at the imaging center, but the patient can call to see if we have any cancellations... So I started doing that a couple times a day.
Then my nurse navigator, Renee, got in touch with me about it. She and her supervisor said that was pretty ridiculous to ask a diagnosed patient to wait that long, and so they went to bat for me. They were successful and late yesterday afternoon I got a call from someone in scheduling and they were going to find a way to work me in by doing some manual adjustments in the scheduling system... there was an opening on Monday, November 24 at 2 o'clock, was I available? Heck yes! So, that's what I get to do on Monday.
What a Week!
Originally posted on caringbridge November 15, 2014
If you are here reading this then you heard the news... I learned on Monday, November 10th that a lump my doctor (bless her!!) found in my breast is cancerous... invasive ductile carcinoma. I don't know a lot yet but am scheduled to meet with my surgeon on Tuesday, the 18th. In the meantime I've gotten to have blood drawn, get a chest x-ray, and have an MRI all in less than a week! We are going to use this site to share updates about what is going on with my treatment.
The good news at this point is there are only two very small spots... the one my doctor felt is about the size of a pea (0.9 cm at it's largest dimension) so it is really small and that is a good thing! The other spot is even smaller and was found on the MRI on Friday... I will mostly likely have another biopsy on it sometime next week to find out if there are more cancer cells. Another thing I know is my cancer is "Grade 1" (this is different than the term "stage" which you may be more familiar with). Grade is a way they tell how different the cancer cells are compared to a normal cell... Grade 1 is the best/least abnormal (with 3 being the worst/most different) so that is good and indicates it is most likely not a super aggressive cancer.
I am so thankful for my family and my friends who I know are going to support me and help me and my family get through this - they already are! I want to give a special thank you to my friend Beth who has one of the busiest, craziest lives I know, and yet she has already driven me through a snowstorm to my MRI, introduced me to a friend who has been through this, and likely gave you this web address as she coordinates some meals for my family... and she would do more if I would let her! And also to Dawn for watching my kiddos many extra hours this week and helping their lives not turn quite so upside down. Thank you!
I know in my heart everything is going to be ok, but I also am trying to be realistic and accept that it is going to be really hard sometimes. So I can use all the positive vibes I can get for strength and healing and remembering to hold on to all the wonderful things in my life. Thank you so much for keeping Claire, Bryce, Juan, and myself in your thoughts and prayers. Love, shana
If you are here reading this then you heard the news... I learned on Monday, November 10th that a lump my doctor (bless her!!) found in my breast is cancerous... invasive ductile carcinoma. I don't know a lot yet but am scheduled to meet with my surgeon on Tuesday, the 18th. In the meantime I've gotten to have blood drawn, get a chest x-ray, and have an MRI all in less than a week! We are going to use this site to share updates about what is going on with my treatment.
The good news at this point is there are only two very small spots... the one my doctor felt is about the size of a pea (0.9 cm at it's largest dimension) so it is really small and that is a good thing! The other spot is even smaller and was found on the MRI on Friday... I will mostly likely have another biopsy on it sometime next week to find out if there are more cancer cells. Another thing I know is my cancer is "Grade 1" (this is different than the term "stage" which you may be more familiar with). Grade is a way they tell how different the cancer cells are compared to a normal cell... Grade 1 is the best/least abnormal (with 3 being the worst/most different) so that is good and indicates it is most likely not a super aggressive cancer.
I am so thankful for my family and my friends who I know are going to support me and help me and my family get through this - they already are! I want to give a special thank you to my friend Beth who has one of the busiest, craziest lives I know, and yet she has already driven me through a snowstorm to my MRI, introduced me to a friend who has been through this, and likely gave you this web address as she coordinates some meals for my family... and she would do more if I would let her! And also to Dawn for watching my kiddos many extra hours this week and helping their lives not turn quite so upside down. Thank you!
I know in my heart everything is going to be ok, but I also am trying to be realistic and accept that it is going to be really hard sometimes. So I can use all the positive vibes I can get for strength and healing and remembering to hold on to all the wonderful things in my life. Thank you so much for keeping Claire, Bryce, Juan, and myself in your thoughts and prayers. Love, shana
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