Just posting on the fly from my phone that the procedure to place the chest port went just fine today.
I'm a bit sore but doing well. Tomorrow is the MUGA scan which shouldn't be a big deal. And then it's time for a 3-day weekend and finding some fun and relaxing things to do!
May 24, 2012
May 18, 2012
Healing, Oncology and Lessons from the Cereal Aisle
It's a good thing I have nothing else to do with my time than go to medical appointments. Otherwise imagine how boring my life would be.
It's been awhile, so I'll catch you up with the highlights.
Healing from Surgery
This continues to go well. I'm gaining more and more range of motion in my shoulder and have been back to a regular routine for a while now. I don't have the same energy I did before surgery, but it's coming along.
There are a couple of hiccups that are delaying full healing (one is an infection I'm taking antibiotics for and one is just kind of gross so I'll spare you). But those will be resolved by the end of the month.
What's Coming Up
I've been to four appointments this week (nurse visit, surgeon follow-up, physical therapy, and a consultation with Oncologist #1, Dr. N.) There's heaps more fun coming up. Here's a rundown:
May 24: Port placement
I'm going to have a port inserted into my upper chest so that my veins don't have to take all the poking and prodding I'll be having in the next year. Instead the chemo drugs, blood draws, and whatever else will be going in or coming out through the port. It'll be completely under the skin but the outline of it might be visible. I'll be sedated for this lovely procedure.
May 25 and 31: Various scans
They want to check my heart so they can see how strong it is. And I need a CT scan of the chest and abdomen and a bone scan.
June 1: Phone visit with Dr. N., to review results of scans.
June 4: Consultation with Oncologist #2, Dr. F., to hear what he has to say about the chemo regimens he recommends for me.
Soon after that: Chemo begins.
Consultation with Oncologist #1
I learned a lot today and feel positive about my visit with Dr. N.
I could be in one of three groups, and there's no way to tell which group I'm in ahead of time (this goes for everyone, by the way).
Group #1 is people who have cancer removed (as I have) and then do not experience recurrence, even with no further treatment.
Group #2 is people who have cancer removed and need treatment to prevent recurrence.
Group #3 is people who have cancer removed, have treatment, and just don't have the biology (she used that word - not really sure how to explain it) to prevent recurrence.
So based on individual factors of my individual situation, and in case I'm not in Group #1, she recommends the best course of action for me as surgery (check that one off), chemo/herceptin (herceptin is the drug I get through the port every 3 weeks for a year that targets only bad cells), radiation, and tamoxifen.
She presented two different chemo options and told me which one is her first pick and why. But the second choice pick is a completely viable option, too. There's no data that categorically states that her first pick is better than her second pick - it's her opinion based on her experience. She believes that if I asked 10 oncologists, 6-7 of them would agree with her. I'll be seeing another oncologist June 4 to see what he says.
The regimens differ in terms of intervals and drugs. In general, an every 1 or 2 weeks regimen is going to be harder to take yet also gives the cancer cells the least opportunity to fight back. Every 3 weeks is easier to take but could be easier on the cancer cells.
Either way you slice it, I will be losing my hair. That's a given. (Eyebrows and eyelashes might be spared a bit, but the rest will be temporarily gone). More on that in another post.
Another key thing I learned is that the whole process is constantly monitored, evaluated and tweaked for the highest level of comfort and efficacy. My heart function, information about my platelets and all kinds of other things will be looked at frequently. There are a variety of anti-nausea drugs, a variety of this and that to try, and everyone's response is individual. There are a whole host of possible side effects, some of which I may experience and some of which I may not. We just have to see how it goes.
In general I was told to expect ups and downs.
How I'm Doing
Right now I'm really saturated with information and am tired of thinking about it. I haven't slept well the last few nights and am tired.
I'm also very hopeful and am still dedicated to finding positivity everywhere possible. I do this on my own and with the help of my friends and family. Even the lady at the front desk in oncology who spent 10 minutes with me telling me about how I could call on her for tea, crackers, a hug, a bed to lie down on, etc. helped.
I'm up and then I'm down. I can be totally distracted from this and enjoying my life and then really sad and angry about the whole thing. I think that's pretty typical.
What Helps
Hearing from you, funny stuff, seeing friends, meeting with clients (good distraction), family, sunny days, exercising.
What Doesn't Help
In case you were wondering, it doesn't really help to quiz me in the cereal aisle at the grocery store about how many cycles of chemo I'm going to need to go through and what my prognosis is. (This actually happened, and no it wasn't you - it was someone I know very casually who doesn't know about this blog).
It's natural that when we hear about something challenging we want to know the end of the story. So we ask these kinds of questions:
What's your prognosis?
Do you think you'll win the custody battle?
Is your company going to lay off your team? What will you do then?
Of course we want to jump right to the happy (or not so happy) ending. But what's most helpful for people is to be with them right where they are.
I know I've asked people who were in the midst of a struggle questions that were about satisfying my own curiosity. I meant well, but I wasn't attuned. I know better now.
I've come up with a basic line (that's polite) that I can use with people on the periphery who are being too nosy for my taste. (The rude version I can say in my head). I realized after the Cereal Aisle Incident that I have to be able to protect myself with such a line, because although it may seem like I can chat about this as if we were talking about a remodel or M's classes next year at high school, I really can't without some kind of mood recovery plan. And I don't always have the time for that.
As always, thank you so much for your continued positive thoughts, supportive cards, dinners and everything else great that you're sending my way. It all boosts my spirits!
It's been awhile, so I'll catch you up with the highlights.
Healing from Surgery
This continues to go well. I'm gaining more and more range of motion in my shoulder and have been back to a regular routine for a while now. I don't have the same energy I did before surgery, but it's coming along.
There are a couple of hiccups that are delaying full healing (one is an infection I'm taking antibiotics for and one is just kind of gross so I'll spare you). But those will be resolved by the end of the month.
What's Coming Up
I've been to four appointments this week (nurse visit, surgeon follow-up, physical therapy, and a consultation with Oncologist #1, Dr. N.) There's heaps more fun coming up. Here's a rundown:
May 24: Port placement
I'm going to have a port inserted into my upper chest so that my veins don't have to take all the poking and prodding I'll be having in the next year. Instead the chemo drugs, blood draws, and whatever else will be going in or coming out through the port. It'll be completely under the skin but the outline of it might be visible. I'll be sedated for this lovely procedure.
May 25 and 31: Various scans
They want to check my heart so they can see how strong it is. And I need a CT scan of the chest and abdomen and a bone scan.
June 1: Phone visit with Dr. N., to review results of scans.
June 4: Consultation with Oncologist #2, Dr. F., to hear what he has to say about the chemo regimens he recommends for me.
Soon after that: Chemo begins.
Consultation with Oncologist #1
I learned a lot today and feel positive about my visit with Dr. N.
I could be in one of three groups, and there's no way to tell which group I'm in ahead of time (this goes for everyone, by the way).
Group #1 is people who have cancer removed (as I have) and then do not experience recurrence, even with no further treatment.
Group #2 is people who have cancer removed and need treatment to prevent recurrence.
Group #3 is people who have cancer removed, have treatment, and just don't have the biology (she used that word - not really sure how to explain it) to prevent recurrence.
So based on individual factors of my individual situation, and in case I'm not in Group #1, she recommends the best course of action for me as surgery (check that one off), chemo/herceptin (herceptin is the drug I get through the port every 3 weeks for a year that targets only bad cells), radiation, and tamoxifen.
She presented two different chemo options and told me which one is her first pick and why. But the second choice pick is a completely viable option, too. There's no data that categorically states that her first pick is better than her second pick - it's her opinion based on her experience. She believes that if I asked 10 oncologists, 6-7 of them would agree with her. I'll be seeing another oncologist June 4 to see what he says.
The regimens differ in terms of intervals and drugs. In general, an every 1 or 2 weeks regimen is going to be harder to take yet also gives the cancer cells the least opportunity to fight back. Every 3 weeks is easier to take but could be easier on the cancer cells.
Either way you slice it, I will be losing my hair. That's a given. (Eyebrows and eyelashes might be spared a bit, but the rest will be temporarily gone). More on that in another post.
Another key thing I learned is that the whole process is constantly monitored, evaluated and tweaked for the highest level of comfort and efficacy. My heart function, information about my platelets and all kinds of other things will be looked at frequently. There are a variety of anti-nausea drugs, a variety of this and that to try, and everyone's response is individual. There are a whole host of possible side effects, some of which I may experience and some of which I may not. We just have to see how it goes.
In general I was told to expect ups and downs.
How I'm Doing
Right now I'm really saturated with information and am tired of thinking about it. I haven't slept well the last few nights and am tired.
I'm also very hopeful and am still dedicated to finding positivity everywhere possible. I do this on my own and with the help of my friends and family. Even the lady at the front desk in oncology who spent 10 minutes with me telling me about how I could call on her for tea, crackers, a hug, a bed to lie down on, etc. helped.
I'm up and then I'm down. I can be totally distracted from this and enjoying my life and then really sad and angry about the whole thing. I think that's pretty typical.
What Helps
Hearing from you, funny stuff, seeing friends, meeting with clients (good distraction), family, sunny days, exercising.
What Doesn't Help
In case you were wondering, it doesn't really help to quiz me in the cereal aisle at the grocery store about how many cycles of chemo I'm going to need to go through and what my prognosis is. (This actually happened, and no it wasn't you - it was someone I know very casually who doesn't know about this blog).
It's natural that when we hear about something challenging we want to know the end of the story. So we ask these kinds of questions:
What's your prognosis?
Do you think you'll win the custody battle?
Is your company going to lay off your team? What will you do then?
Of course we want to jump right to the happy (or not so happy) ending. But what's most helpful for people is to be with them right where they are.
I know I've asked people who were in the midst of a struggle questions that were about satisfying my own curiosity. I meant well, but I wasn't attuned. I know better now.
I've come up with a basic line (that's polite) that I can use with people on the periphery who are being too nosy for my taste. (The rude version I can say in my head). I realized after the Cereal Aisle Incident that I have to be able to protect myself with such a line, because although it may seem like I can chat about this as if we were talking about a remodel or M's classes next year at high school, I really can't without some kind of mood recovery plan. And I don't always have the time for that.
As always, thank you so much for your continued positive thoughts, supportive cards, dinners and everything else great that you're sending my way. It all boosts my spirits!
May 7, 2012
I've Had Better Mondays
Today I had my first follow-up appointment with the surgeon. I'm healing well from surgery.
She also went over the results of the pathology report. The news could be better and it could be worse.
Results
During surgery Dr. C. removed two lymph nodes, and she was hoping that they would not turn out to be cancerous. But one of them has a "micro met" (this is less than .2 mm of cancer) and the other has a 1 mm met, a very tiny focus of cancer.
So even though this is not the news that any of us wanted to hear, for being bad news it "bodes well" and is "so much better than it could have been".
I wrote those phrases down as she said them.
Overview of Treatment Plan
I will need to have chemo, probably for a total of four months, probably starting in about a month. She is guessing that I'll have two different drugs every two weeks for four cycles (that's the first two months), then two different drugs every two weeks for four cycles.
Then I'll get a month off or so and will start radiation, probably Monday-Friday for six weeks. This may be both on the chest wall and the lymph node area. I need to have radiation because the total area that the three small breast tumors covered (yes, turns out there were three instead of two) was larger than 5 cm. And also they are starting to recommend radiation for women who have some cancer in the lymph nodes, regardless of breast tumor size.
Sometime either during or after all of this I'll start taking Herceptin, a chemo drug that is well tolerated and that I'll receive intravenously every three weeks for about a year.
And then at some point I'm assuming it will be tamoxifen time, an estrogen-suppressing oral medication.
Very Next Steps
I have an appointment with Dr. N, a medical oncologist Dr. C recommends, on Friday, May 18. I may need some staging studies done, like a CT or bone scan.
I'll also continue with the stretching exercises and healing from the surgery.
I'll be thinking about what other steps to take, like reaching out to my key resource people more.
How I'm Doing
Where do I start? I'm upset. This is a lot to take in, and it's very disappointing and scary. I feel like I've been hit with a blast from a fire hose.
Hopefully soon I'll be back to doing this one day at a time thing and can stay focused on whatever is going on that particular day. Right now, I'm feeling overwhelmed.
Numbers
My dad (who has cancer care taking experience) advised me not to pay much attention to "the numbers" (meaning survival rates and other stats). Doctors can't turn the numbers into me.
I think that's good advice, and I think that's really hard to do. But at this point I need to think only about getting through this successfully and having a good long term outcome. Obsessing over stats and negative "what ifs" will not help me.
My dad (and others) have told me that the whole chemo and radiation thing, while not pleasant, is "eminently doable". Going into this thinking it's doable is pretty essential I think.
I'll need all of your support to get through this. Thanks for being there.
She also went over the results of the pathology report. The news could be better and it could be worse.
Results
During surgery Dr. C. removed two lymph nodes, and she was hoping that they would not turn out to be cancerous. But one of them has a "micro met" (this is less than .2 mm of cancer) and the other has a 1 mm met, a very tiny focus of cancer.
So even though this is not the news that any of us wanted to hear, for being bad news it "bodes well" and is "so much better than it could have been".
I wrote those phrases down as she said them.
Overview of Treatment Plan
I will need to have chemo, probably for a total of four months, probably starting in about a month. She is guessing that I'll have two different drugs every two weeks for four cycles (that's the first two months), then two different drugs every two weeks for four cycles.
Then I'll get a month off or so and will start radiation, probably Monday-Friday for six weeks. This may be both on the chest wall and the lymph node area. I need to have radiation because the total area that the three small breast tumors covered (yes, turns out there were three instead of two) was larger than 5 cm. And also they are starting to recommend radiation for women who have some cancer in the lymph nodes, regardless of breast tumor size.
Sometime either during or after all of this I'll start taking Herceptin, a chemo drug that is well tolerated and that I'll receive intravenously every three weeks for about a year.
And then at some point I'm assuming it will be tamoxifen time, an estrogen-suppressing oral medication.
Very Next Steps
I have an appointment with Dr. N, a medical oncologist Dr. C recommends, on Friday, May 18. I may need some staging studies done, like a CT or bone scan.
I'll also continue with the stretching exercises and healing from the surgery.
I'll be thinking about what other steps to take, like reaching out to my key resource people more.
How I'm Doing
Where do I start? I'm upset. This is a lot to take in, and it's very disappointing and scary. I feel like I've been hit with a blast from a fire hose.
Hopefully soon I'll be back to doing this one day at a time thing and can stay focused on whatever is going on that particular day. Right now, I'm feeling overwhelmed.
Numbers
My dad (who has cancer care taking experience) advised me not to pay much attention to "the numbers" (meaning survival rates and other stats). Doctors can't turn the numbers into me.
I think that's good advice, and I think that's really hard to do. But at this point I need to think only about getting through this successfully and having a good long term outcome. Obsessing over stats and negative "what ifs" will not help me.
My dad (and others) have told me that the whole chemo and radiation thing, while not pleasant, is "eminently doable". Going into this thinking it's doable is pretty essential I think.
I'll need all of your support to get through this. Thanks for being there.
May 3, 2012
Recovering Well
No big news - just letting you know that I'm recovering well and am feeling better and stronger each day.
Yesterday's big triumph was taking a shower. I'm doing exercises to regain range of motion in my right arm (that will take a while). I eat, I take pain pills, I take little walks, I read, I nap. It's a super exciting life.
B. and the girls have been extremely helpful, as has "The Village". This means you! Thank you.
Yesterday's big triumph was taking a shower. I'm doing exercises to regain range of motion in my right arm (that will take a while). I eat, I take pain pills, I take little walks, I read, I nap. It's a super exciting life.
B. and the girls have been extremely helpful, as has "The Village". This means you! Thank you.
May 1, 2012
Home Again
It's me, Heather - back to the blog!
I got to go home today about 9:30 am, which suited me just fine. By then I had graduated to "no IV needed" status and a few other things which meant the hospital could give me the boot.
I'm tired and sore, but still pretty euphoric about getting the surgery over with and being home. I expect that this will shift as the novelty of getting out of the hospital wears off and the plain old tediousness of recovery sets in for a while.
I was very relieved to hear that the surgery went well and I'm so grateful not to have had unpleasant side effects from the anesthesia or the pain medication.
I was in good hands and the medical staff were all nice. But being a patient in a hospital sucks. It's a strange experience just to surrender to what is happening to you. You don't feel good. There's not a lot of sleep to be had, either. It can be loud, and medical staff come in at regular intervals to check this and do that.
I'm expecting to hear more information later this week (maybe tomorrow) and I have a follow-up appointment with Dr. C. next Monday. Depending on how it goes, that might be the day I get the drain removed (if you don't know what that is, that is just as well!)
I've been advised to use my right arm in non-strenuous ways immediately and I have some exercises to do to help gain range of motion. But I also take Vicodin for pain, so I'm in a weird semi-normal, semi-unwell phase.
OK, time to go back to bed.
I got to go home today about 9:30 am, which suited me just fine. By then I had graduated to "no IV needed" status and a few other things which meant the hospital could give me the boot.
I'm tired and sore, but still pretty euphoric about getting the surgery over with and being home. I expect that this will shift as the novelty of getting out of the hospital wears off and the plain old tediousness of recovery sets in for a while.
I was very relieved to hear that the surgery went well and I'm so grateful not to have had unpleasant side effects from the anesthesia or the pain medication.
I was in good hands and the medical staff were all nice. But being a patient in a hospital sucks. It's a strange experience just to surrender to what is happening to you. You don't feel good. There's not a lot of sleep to be had, either. It can be loud, and medical staff come in at regular intervals to check this and do that.
I'm expecting to hear more information later this week (maybe tomorrow) and I have a follow-up appointment with Dr. C. next Monday. Depending on how it goes, that might be the day I get the drain removed (if you don't know what that is, that is just as well!)
I've been advised to use my right arm in non-strenuous ways immediately and I have some exercises to do to help gain range of motion. But I also take Vicodin for pain, so I'm in a weird semi-normal, semi-unwell phase.
OK, time to go back to bed.
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