Yes, I've been absent. Took another break from the blog and attempted to get my head on straight again. It was tending to twist and warp. Between Christmas and surgery and moments of complete panic, blogging was not at the top of my list. I'm still struggling somewhat, but life goes on, and therefore, so do I.
Last Thursday's surgery went fine. The folks at North Hills Surgery Clinic get extra points for being extremely kind and caring. Considering I was there so briefly, I really felt well cared for and even a little bit babied. Came home Thursday afternoon and had a very nice nap. That nice nap is a very good memory, since I haven't slept well since then.
As far as the surgery went, Dr. Cross cleaned me out as best he could. He said there was a lot of scar tissue he had to work around, but took whatever he could to leave me "clean as a whistle". He did have to take a wee bit of muscle, but other than that, got every area he could find that might have lymph nodes. After all that, the pathology report showed only two nodes, both testing positive for cancer. Two nodes found this round, three the first, adding up to only 5 axillary (under arm) nodes...way less than the normal person (normal is 15-30 nodes), but not unheard of (I Googled it, of course). I told you, my body is a freak of nature.
The cancer was contained within these two nodes, though, so nothing was spreading in the immediate vicinity...also known as clean margins. However, being in the nodes does mean there's a pretty good chance the cancer is moving elsewhere. Because of this, and since TNBCs more often than not have early recurrences (within first 4 years), we will begin chemo again as soon as possible.
I am, again, healing fairly quickly. My left arm is sore and feels like there is something tight running from armpit to wrist that prevents it from reaching, raising, or staightening. I am once more, unable to sleep on my left side and dealing with a surgical drain.
I did get results back from abdominal, chest, and bone scans. All showed clear, except for the chest scan, which showed the lymph node that sent me to surgery last week. I requested a brain scan, since I keep reading that it is very common for TNBC to metastasize to the brain. I received the results from that on Monday. It seems I DO have a brain, and that is all. So praise God for that. I cannot explain the feeling of fear that comes from not knowing what this evil disease may be doing in my body. It's great to know that, at this moment, I'm clean and clear.
Backing up a bit farther...Prior to surgery, we met with the oncologist last Tuesday and got his take on the whole thing. I arrived with my long list of questions and he was great to patiently let me ask these one by one (some intelligent, some kind of nutty - but I had to ask). He even agreed to some of my queries about treatments and alternative/additional medications to be used...things I had read. We will be adding Zometa to the chemo cocktail to strengthen my bones, which may help keep this from metastasizing there. There is also a low dose oral chemo drug that I will take when I do radiation that may help the radiation kill more errant cells.
Of course, I asked about PARP Inhibitors, the up and coming range of drugs currently in clinical trial and showing some promise for a subset of women with TNBC. He said there were many clinical trials currently in their last phases and one drug should be approved within the next three months. When I read about the "encouraging results" of this drug giving women with metastatic TNBC 12 months instead of 7 months, it doesn't bring me a lot of comfort. I don't like thinking in terms of months, unless you count how many months until this ENDS.
As far as my chemo goes, ideally it would begin after my surgical drain is removed, but I think they are considering beginning chemo while I have the drain, considering the aggressive nature of this cancer. If this is the case, it will effect how I heal from last week's surgery (not in a good way). I go back to see my oncologist tomorrow and will find out then.
Chemo will be three weeks on (1 x week), one week off, for four cycles. If I tolerate it well, he may go four additional cycles. That's 8 months! Then 6 weeks of daily radiation treatments. I have a feeling that 2011 is not going to be my favorite year.
I'm stressing about work, substitutes, sick days (they're now officially used up), sick bank, health insurance, things I so wish I didn't have to think about. I want so badly to return to work, while at the same time fear dealing with the stress of coordinating non-stop doctor appointments and chemotherapy (and it's related side effects) with a 7:30 - 4:00 (or later) work schedule, lesson plans, sub plans, and the myriad of other stresses that go along with teaching over 30 classes a week at two different schools. Can I do this? Right now, I do not know. I really WANT to, though. I want normal and everything that goes with it. All that grumbling I used to do when life was normal...what was I thinking?
What I have to keep reminding myself is that right now, at this moment, my body is clean and clear. I know there are bad cells floating around (as there are in all of our bodies - did you know that?), so my goal is to do what I can to keep myself clean and clear through diet and exercise. I miss my sugar and fat, but compared to life and health, it's a small price to pay. I am working on becoming as alkaline as possible.
As you can see, I continue to need prayer, and lots of it. My communications with the Almighty have dwindled, for some reason. I guess I am just weary and not really happy with how He is answering me, so why ask? I know that's not right, but that's how my mind is leaning. I need to work on that.
I think lately my biggest enemy is my own mind. The report on my brain MRI came back with good results, but it didn't show all the darkness and doubt that keep swimming around in there. I need two things to leave me and never come back: this cancer and these frightening thoughts. Please help pray them away.
If you've made it through this depressing post, I thank you and I also apologize for being such a downer. Hopefully the next one will be better. One thing I've found, when I'm down there's only one direction to go.
Right now, I think it's time to put on my sneaks and let Cleo take me for a walk. It will be good to air the head.
Wednesday, December 29, 2010
Monday, December 27, 2010
Yes, I'm Okay
I know, I know...I've been MIA. I will update more soon, but just so you know, I'm okay. Had a lovely Christmas with family here and again in Southern OK. Hardest part was looking in the eyes of those I love the most and seeing them tear up. Why does Christmas bring out the emotions in us? Christmas = family, memories, traditions, love, salvation, eternity...all such emotionally heavy words that help turn on the tears in so many.
So...let me set things straight. This is NOT my last Christmas with you people. :)
I am doing fine and recovering from surgery. I'll try and give a more in-depth update soon, but for now, know I am fine and feeling stronger each day (mentally and physically). Thanks for your sweet notes, comments, texts, and calls.
Love to you all.
Patti
So...let me set things straight. This is NOT my last Christmas with you people. :)
I am doing fine and recovering from surgery. I'll try and give a more in-depth update soon, but for now, know I am fine and feeling stronger each day (mentally and physically). Thanks for your sweet notes, comments, texts, and calls.
Love to you all.
Patti
Friday, December 17, 2010
Not on My Christmas List: Axillary Lymph Node Dissection
Dr. Cross called this afternoon. The pathology report came back positive. The lymph node is malignant. Surgery is a go for December 23rd; I'll know more details on Monday. It will be outpatient and I'll be home and on painkillers that evening...and probably for several days.
Ho-ho-ho.
I did ask if we could still plan to drive south to see my in-laws on Christmas day, returning the next day (not our usual norm, but neither are most things this year). He thought that might be fine, as long as we stopped every hour or so and I got out and walked around. Don't want any blood clots. He said he'd be available and I could call with any problems.
As far as surgery goes, he will be removing a lot of lymph nodes. This is called an axillary lymph node dissection. He said maybe 15 to 20 will be removed; it all depends. Said he'd know when he got in there. I want them gone, gone, gone...and ASAP. He agrees with me. Only thing is, I will now be at a MUCH higher risk for lymphedema...a very unpleasant and lifelong side effect of this type of surgery.
Many of you are asking why this wasn't done in the first place. Well, in the first place, during my mastectomy, they did something called a sentinel node biopsy. This is where they shoot dye into the breast a few hours before surgery. This dye goes to the sentinel node, so the doctor knows which one to remove. He removes the nodes that the dye highlights, a pathologist checks then and there for cancer, if none is found, that's it. If they find something, more nodes are removed. (In my surgery, the three nodes removed were clean and clear. No cancer.)
They then take these nodes to the lab and do even more in-depth testing to make sure there are no cancer cells hiding there. If this were the case, I would have been back pretty quickly to get more nodes removed.
I vividly remember the happy call I got from Dr. Cross telling me my nodes were clear. And I have that lovely path report saying they found "no evidence of malignancy" in those same nodes. So, the fact that this lymph node has now presented with cancer is most disturbing.
Again, I am the woman in that vast minority whose body doesn't do what they thought it would. They should know by now that this is how my body rolls. Nothing has gone as planned. My body is a freak of nature. (We've all known that for a long time, haven't we?)
I asked him about chemo and how soon that will happen. He's thinking it's possible that I will start the week following surgery...about two weeks before he'd normally want it to happen. He said, and I agree, that we need to hit this hard and fast. (Considering my last chemo - the one that didn't work - ended Sept 30, I think it's too late for fast.) After chemo, six weeks of radiation will follow. I'm ready.
I am trying to visualize this time next year...when this is all some kind of bad memory and only lends to my storytelling. I know I will be dealing with cancer for the rest of my life, though. I'm just praying it's a long enough life that they find some way to deal with triple negative breast cancers and can make my life last even longer. I have way too much ahead of me that I do not want to miss. Pray for the researchers, scientists, anyone and everyone who is taking this seriously, sees the urgency to find a cure for this hideous and evil disease, and is doing something about it.
Ho-ho-ho.
I did ask if we could still plan to drive south to see my in-laws on Christmas day, returning the next day (not our usual norm, but neither are most things this year). He thought that might be fine, as long as we stopped every hour or so and I got out and walked around. Don't want any blood clots. He said he'd be available and I could call with any problems.
As far as surgery goes, he will be removing a lot of lymph nodes. This is called an axillary lymph node dissection. He said maybe 15 to 20 will be removed; it all depends. Said he'd know when he got in there. I want them gone, gone, gone...and ASAP. He agrees with me. Only thing is, I will now be at a MUCH higher risk for lymphedema...a very unpleasant and lifelong side effect of this type of surgery.
Many of you are asking why this wasn't done in the first place. Well, in the first place, during my mastectomy, they did something called a sentinel node biopsy. This is where they shoot dye into the breast a few hours before surgery. This dye goes to the sentinel node, so the doctor knows which one to remove. He removes the nodes that the dye highlights, a pathologist checks then and there for cancer, if none is found, that's it. If they find something, more nodes are removed. (In my surgery, the three nodes removed were clean and clear. No cancer.)
They then take these nodes to the lab and do even more in-depth testing to make sure there are no cancer cells hiding there. If this were the case, I would have been back pretty quickly to get more nodes removed.
I vividly remember the happy call I got from Dr. Cross telling me my nodes were clear. And I have that lovely path report saying they found "no evidence of malignancy" in those same nodes. So, the fact that this lymph node has now presented with cancer is most disturbing.
Again, I am the woman in that vast minority whose body doesn't do what they thought it would. They should know by now that this is how my body rolls. Nothing has gone as planned. My body is a freak of nature. (We've all known that for a long time, haven't we?)
I asked him about chemo and how soon that will happen. He's thinking it's possible that I will start the week following surgery...about two weeks before he'd normally want it to happen. He said, and I agree, that we need to hit this hard and fast. (Considering my last chemo - the one that didn't work - ended Sept 30, I think it's too late for fast.) After chemo, six weeks of radiation will follow. I'm ready.
I am trying to visualize this time next year...when this is all some kind of bad memory and only lends to my storytelling. I know I will be dealing with cancer for the rest of my life, though. I'm just praying it's a long enough life that they find some way to deal with triple negative breast cancers and can make my life last even longer. I have way too much ahead of me that I do not want to miss. Pray for the researchers, scientists, anyone and everyone who is taking this seriously, sees the urgency to find a cure for this hideous and evil disease, and is doing something about it.
Thursday, December 16, 2010
Quick Update on the Latest - An Ongoing Saga
I saw Dr. Cross again today. It's a good thing I like the man, as it seems we'll be seeing each other a lot more.
I found a lump under my left armpit (surgery side) over the weekend, so they scheduled me to come in asap to check it out. I was praying it was nothing. Seems I was (most likely) wrong. It's something.
He did an ultrasound and took several core needle biopsy samples. I am going to be sore and bruised when the numbness wears off. I guess it's a good thing that area still doesn't have a lot of feeling.
We won't know for absolute until the pathology report comes back, but he is pretty sure it's a malignancy. It's a lymph node gone crazy. Damn cancer. With this I guess I move from stage II to stage III.
One of the few bits of good news that I've had lately is that this cancer had not spread to the nodes. That single bit of knowledge kept me (mostly) calm, and gave me confidence. Hearing this news today has taken a lot of that away. What next? I'd really like one bit of good news to stick. Or at least the bad news to quit coming.
To be fair, I did receive one bit of good news today. Following the biopsy, while I was getting bandaged and dressed, Dr. Cross called the labs that did the CT scans and bone scan. He wanted to know what they saw where this lump is concerned. He had them read the scans right then and there.
The bone scan looked good (good - a word I sure would like to hear more of), and the chest CT was clear, other than the armpit node. No word yet on the abdominal scan. I'll get that news on Tuesday.
He is scheduling me for surgery in one week (Dec 23). This will be an outpatient procedure in which he will remove the node and I'll go home and recover. I'll be taking a lovely drain with me. Oh goody. Merry Christmas to me. (At least I am an expert on drain care and maintenance.)
Right now none of this is written in stone. I am still praying for a miracle and for this node, that "looks malignant", to be just a weird benign fluke. But, if my previous experience along this line is any indicator, I don't have a good feeling about this.
This is really getting old, but I know it's my new reality, and I am still trying to come to grips with it. (Anyone in NWA know a good counselor?)
Thanks to so many of you for your prayers, your sweet comments (here, on Facebook, and in person), your emails, your cards, your gifts, your visits, your singing (you know who you are - Stars), your hugs (just now answered the door to a lovely friend here to deliver a hug), and your wonderful love and friendship. You make the journey, however traumatic, much more bearable. There's no way I could do this alone.
I found a lump under my left armpit (surgery side) over the weekend, so they scheduled me to come in asap to check it out. I was praying it was nothing. Seems I was (most likely) wrong. It's something.
He did an ultrasound and took several core needle biopsy samples. I am going to be sore and bruised when the numbness wears off. I guess it's a good thing that area still doesn't have a lot of feeling.
We won't know for absolute until the pathology report comes back, but he is pretty sure it's a malignancy. It's a lymph node gone crazy. Damn cancer. With this I guess I move from stage II to stage III.
One of the few bits of good news that I've had lately is that this cancer had not spread to the nodes. That single bit of knowledge kept me (mostly) calm, and gave me confidence. Hearing this news today has taken a lot of that away. What next? I'd really like one bit of good news to stick. Or at least the bad news to quit coming.
To be fair, I did receive one bit of good news today. Following the biopsy, while I was getting bandaged and dressed, Dr. Cross called the labs that did the CT scans and bone scan. He wanted to know what they saw where this lump is concerned. He had them read the scans right then and there.
The bone scan looked good (good - a word I sure would like to hear more of), and the chest CT was clear, other than the armpit node. No word yet on the abdominal scan. I'll get that news on Tuesday.
He is scheduling me for surgery in one week (Dec 23). This will be an outpatient procedure in which he will remove the node and I'll go home and recover. I'll be taking a lovely drain with me. Oh goody. Merry Christmas to me. (At least I am an expert on drain care and maintenance.)
Right now none of this is written in stone. I am still praying for a miracle and for this node, that "looks malignant", to be just a weird benign fluke. But, if my previous experience along this line is any indicator, I don't have a good feeling about this.
This is really getting old, but I know it's my new reality, and I am still trying to come to grips with it. (Anyone in NWA know a good counselor?)
Thanks to so many of you for your prayers, your sweet comments (here, on Facebook, and in person), your emails, your cards, your gifts, your visits, your singing (you know who you are - Stars), your hugs (just now answered the door to a lovely friend here to deliver a hug), and your wonderful love and friendship. You make the journey, however traumatic, much more bearable. There's no way I could do this alone.
Bone Scan
I had my bone scan yesterday. Went in at 8:45 and was injected with something radioactive. Then returned later that day for the actual, rather uneventful and boring, bone scan. Think 30 minutes of lying flat and still on a table, arms in holders at your side, feet strapped together, while a large device very slooowwwly creeps it's way down your body, taking pictures of your radioactive self.
This brought to mind the old Steve Martin comedy routine from one of his albums (yes albums - as in vinyl)...the one that, back in the day, had us LOLing for real. That era where every guy, at some point, claimed to be a "wi-ald and cu-rrrazy guy" and everyone else was singing the King Tut song (he's still my favorite honky). And of course, we all enjoyed telling each other, "well, excu-use me!"
Why Steve Martin?, you may ask. Go back to paragraph #1. You see that word radioactive? That's why.
Remember that one? In that skit he discussed common things people sometimes, unthinkingly, say.
Where, when you are speaking and suddenly can't remember what you were going to say, so you say, "I forgot what I was going to say." (I've done that a lot lately.)
To which the listener responds with, "Well, it must not have been very important."
The only appropriate response to such a remark? ..."Oh, now I remember. I'm radioactive."
Well, that was me yesterday...literally. Kind of a weird feeling, though I didn't feel a thing. And I didn't forget what I was going to say, either.
This brought to mind the old Steve Martin comedy routine from one of his albums (yes albums - as in vinyl)...the one that, back in the day, had us LOLing for real. That era where every guy, at some point, claimed to be a "wi-ald and cu-rrrazy guy" and everyone else was singing the King Tut song (he's still my favorite honky). And of course, we all enjoyed telling each other, "well, excu-use me!"
Why Steve Martin?, you may ask. Go back to paragraph #1. You see that word radioactive? That's why.
Remember that one? In that skit he discussed common things people sometimes, unthinkingly, say.
Where, when you are speaking and suddenly can't remember what you were going to say, so you say, "I forgot what I was going to say." (I've done that a lot lately.)
To which the listener responds with, "Well, it must not have been very important."
The only appropriate response to such a remark? ..."Oh, now I remember. I'm radioactive."
Well, that was me yesterday...literally. Kind of a weird feeling, though I didn't feel a thing. And I didn't forget what I was going to say, either.
Tuesday, December 14, 2010
Testing Week...But Definitely NOT My Finals!
As per the doc's suggestion at my infamous MD Anderson visit, I am having a few tests performed this week. For whatever reason, I have escaped a number of common cancer assessing tests...until now.
My imagination swings back and forth where this is concerned. Did the doctors choose not to have these tests run, knowing that ignorance is bliss and that if this cancer has metastasized, finding it early doesn't make much difference than does finding it later (or so I've been told) -- other than causing extra stress, fear, worry, and sadness? Or...(and I like this much better), did the docs not order these tests because they truly don't think they are necessary. As in...they don't expect to find anything unusual in this body of mine.
Finding nothing unusual is, of course, what I'm hoping and praying for...please God.
In Cancerland, this is known as NED (No Evidence of Disease). I have a crush on NED. He's my newest love interest and mild obsession. His evil brother, ED, however, can go straight to hell. And, as a God fearing Christian, I mean that.
Today I had three tests scheduled, CT scans of my chest and abdomen and a bone scan. Luckily, thanks to an inquisitive CT technician (and one of my Walker parents), I discovered that the bone scan scheduled at another location later in the day was, in fact, a bone density scan...not what we wanted. So that appointment was quickly cancelled and rescheduled at the correct location for first thing in the morning.
Also, I have an unplanned visit to Dr. Cross' office on Thursday for an ultrasound of a mysterious lump that I just discovered in my left armpit. I am hoping that it is only scar tissue or something related to the surgery, but we will find out for certain on Thursday (with thanks to Kristen, Dr. Cross' very caring nurse who could not bear to wait until Monday and managed to work me in).
I'll be glad when these tests are behind me and will be even more glad to get good reports. NED, I do love you.
I know I have many prayer warriors out there. If you are so inclined, I would appreciate some fervent appeals on my behalf. I'd like more than anything to have something good to report in a few days.
My imagination swings back and forth where this is concerned. Did the doctors choose not to have these tests run, knowing that ignorance is bliss and that if this cancer has metastasized, finding it early doesn't make much difference than does finding it later (or so I've been told) -- other than causing extra stress, fear, worry, and sadness? Or...(and I like this much better), did the docs not order these tests because they truly don't think they are necessary. As in...they don't expect to find anything unusual in this body of mine.
Finding nothing unusual is, of course, what I'm hoping and praying for...please God.
In Cancerland, this is known as NED (No Evidence of Disease). I have a crush on NED. He's my newest love interest and mild obsession. His evil brother, ED, however, can go straight to hell. And, as a God fearing Christian, I mean that.
Today I had three tests scheduled, CT scans of my chest and abdomen and a bone scan. Luckily, thanks to an inquisitive CT technician (and one of my Walker parents), I discovered that the bone scan scheduled at another location later in the day was, in fact, a bone density scan...not what we wanted. So that appointment was quickly cancelled and rescheduled at the correct location for first thing in the morning.
Also, I have an unplanned visit to Dr. Cross' office on Thursday for an ultrasound of a mysterious lump that I just discovered in my left armpit. I am hoping that it is only scar tissue or something related to the surgery, but we will find out for certain on Thursday (with thanks to Kristen, Dr. Cross' very caring nurse who could not bear to wait until Monday and managed to work me in).
I'll be glad when these tests are behind me and will be even more glad to get good reports. NED, I do love you.
I know I have many prayer warriors out there. If you are so inclined, I would appreciate some fervent appeals on my behalf. I'd like more than anything to have something good to report in a few days.
 |
| CT scan for chest/abdomen Of course, in searching for this photo, I read that it has recently been determined that this machine gives off much more radiation than previously thought. Like up to 442 chest xrays. Figures. Maybe that's why my local docs did not immediately recommend this. |
Thursday, December 9, 2010
This Teacher is Getting Homeschooled
This time last week I was pretty low. Disappointed and disgruntled. Disillusioned and disheartened. Not to mention disgusted.
Enough dissing already.
The control freak in me has taken over. I cannot sit around and wait for someone else to tell me what to do or how to win this battle, mainly because that's just not happening. Thank God for Google...the control freak's best friend. And the library...and Amazon.com...and Barnes and Noble.
Don't get me wrong. I'm not so stupidly arrogant to think I can do this alone or without the help of trained professionals and modern medicine. But it has become apparent that the professionals don't know everything. And modern medicine has it's drawbacks (and sometimes has nothing at all).
I have been reading. Reading, reading, and more reading. Not the stack of fiction I thought I'd be enjoying over these weeks at home. I will get to those eventually...maybe. But first things first. I have been reading and educating myself, not only on my disease, but on how to beat it where it stands. And that's just what I intend to do.
This is what I now know about Triple Negative Breast Cancer:
So guess who's changing her diet? Yep, that would be me. Guess who's been working up a good sweat 30-45 min a day? Uh huh. Me again. (I've got a long way to go on that second one, but you've got to walk before you can run, right?) Get in shape or die. How's that for motivation? A personal trainer's dream.
I've always been a fairly healthy eater, but I certainly have also done plenty of indulging. The fact that I have a very high metabolism gave me a false sense of security, and I have never hesitated to eat sweets and high fat foods. And lots of them. Entire jars of Nutella in two days...things like that. Hello, my name is Patti and I'm a sugaraholic. On second thought, I take that back about me being a healthy eater.
So these things I CAN change. I never thought I'd have to, but I can. And I will. You just watch me.
Enough dissing already.
The control freak in me has taken over. I cannot sit around and wait for someone else to tell me what to do or how to win this battle, mainly because that's just not happening. Thank God for Google...the control freak's best friend. And the library...and Amazon.com...and Barnes and Noble.
Don't get me wrong. I'm not so stupidly arrogant to think I can do this alone or without the help of trained professionals and modern medicine. But it has become apparent that the professionals don't know everything. And modern medicine has it's drawbacks (and sometimes has nothing at all).
I have been reading. Reading, reading, and more reading. Not the stack of fiction I thought I'd be enjoying over these weeks at home. I will get to those eventually...maybe. But first things first. I have been reading and educating myself, not only on my disease, but on how to beat it where it stands. And that's just what I intend to do.
This is what I now know about Triple Negative Breast Cancer:
- The majority of women with TNBC are...
- African-American or Hispanic (not me)
- Young (I don't think they mean mentally, so again, not me)
- Overweight (uh, nope)
- Had children at a very young age (again, no)
- Recently gave birth (n-o)
- Did not breastfeed (spent almost 2 years at that, so def not)
- Have high hip-to-waist ratio (I look like a very tall 12 year old boy, so no.)
- Drink alcohol regularly (hmmm...sometimes)
- Have BRCA1 gene mutation (this will be investigated)
- Used oral contraceptives, esp long term (yes, dangit)
- TNBC remained unnamed until 2006.
- About 10-20% of breast cancers are triple negative.
- Approx 50% of all breast cancer deaths are triple negative.
- There are no medications to prevent TNBC's recurrence, as there are with hormone receptive breast cancers (Tamoxifen, Femara, etc).
- Chances for recurrence with TNBC can be high. Way too high. I am not quoting any statistics here. I don't even want to think about them.
- This high probability for recurrence can be lowered by as much as 60% with a low fat diet and 4-5 hours of exercise a week.
So guess who's changing her diet? Yep, that would be me. Guess who's been working up a good sweat 30-45 min a day? Uh huh. Me again. (I've got a long way to go on that second one, but you've got to walk before you can run, right?) Get in shape or die. How's that for motivation? A personal trainer's dream.
I've always been a fairly healthy eater, but I certainly have also done plenty of indulging. The fact that I have a very high metabolism gave me a false sense of security, and I have never hesitated to eat sweets and high fat foods. And lots of them. Entire jars of Nutella in two days...things like that. Hello, my name is Patti and I'm a sugaraholic. On second thought, I take that back about me being a healthy eater.
So these things I CAN change. I never thought I'd have to, but I can. And I will. You just watch me.
Thursday, December 2, 2010
Our Short Stint at MDA
I've got to quit getting my hopes up. I knew Jesus didn't work at MD Anderson, but I guess I was still hoping for a miracle. (Actually, I take that back...I have no doubt that Jesus works here...just in other ways.)
I don't really know what I expected, but, according to my mood, I must have expected a lot more than I got.
Just seeing the doctor yesterday was an ordeal. My time for registration was 4:00 and we were to see the doctor at 5:00. Since we were there early, we actually got in early, so things were looking good. I was measured, weighed, temp and blood pressure taken, stripped, then gowned from the waist up, brought a toasty warm blanket, and then parked in a room to wait.
and wait..........
and wait..........
and wait..........
We probably sat there for almost two hours. After driving all day and arriving early for our 5:00 (pm!!) appointment, this was seriously wearing on my last nerve.
After the first hour I was beginning to think we'd been forgotten, so David wandered out into the hall to find out what was going on. He found someone who checked for us and, of course, we hadn't been forgotten...doc had just had a "really tough clinic" that day and would be with us shortly.
Uh huh.
So we continued to wait. Eventually, we heard people saying their goodbyes and shutting things down out at the front desk and I know the nighttime cleaning crew was working in the rooms up and down the hallway. David nodded off for a good 20 minutes or more. We were exhausted.
After driving all that way, it's not like we could just get up and storm out, is it? However, when the doctor finally arrived, I kind of wished we had.
This is what we learned:
1) Dr. Pusztai recommended a specific type of chemotherapy regimen. The exact same regimen that Dr. Nagourney from Rational Therapeutics recommended. The kind that my tumor had an "intermediate" reaction to...not ideal. Specifically, for anyone interested, the chemo drugs recommended are a combination of Gemsitabine and Carboplatin (or Cisplatin). As he said, this regimen has shown to be effective in a "subset" of Triple Negative breast cancers. That's the best they can do.
Triple Negative Breast Cancer is not common. About 12-17% of breast cancers are TN. There has not been a lot of study and therefore not a lot of drug choices in treating this type of cancer. TNBC has a very high probability of recurrence in other parts of the body. If it does recurr, things typically get much worse. The mortality rate of TNBCs is very high.
They are currently performing a clinical trial with some success for TNBC patients using something called PARP Inhibitors. However, to qualify for this trial, one's TNBC must have metastasized. I do not qualify, and, God willing, I never will.
2) The fact that I am now Triple Negative as opposed to the ER+/PR+ shown on the original pathology report does not mean my cancer changed. It means that the original path report was wrong. Somebody at the Fayetteville lab screwed up. The group of MDA pathologists who looked at the original slides reported it to be triple neg right from the start. No mutations or weirdness...just really bad cells and a really bad path reading.
3) The fact that, from the beginning, I had TNBC does not mean I was treated with the wrong drugs. In fact, the chemo I received would have been an appropriate regimen to try with TNBC. Sadly, it did not work with me, as it doesn't with about 2-3 percent of women. I'm sick of being in that minute percentage...except I do intend to be in the minute percentage of women whose TNBC never returns. Please, God.
4) Doctor Pusztai recommended I get several scans, xrays, other images of various body parts to make sure the cancer is not elsewhere, which we do NOT expect it to be. These images will also be baseline images in case the cancer does reappear. Which it will NOT be doing. We were going to do this here and follow up with an MDA doc, but I have decided that these tests can all be done at home and read by my own doctors just as easily.
In fact, I am wondering why we were told to be here at all. This all seems like it could've been taken care of via phone and fax.
So, yes, I was a bit disappointed in the whole thing. He was not terribly encouraging and I really thought he would have more recommendations about what they could do for me here (whole person sort of thing...diet, exercise, mental health, stress, sleep...the sort of thing I read in their literature). I asked for an appointment with a dietician, counseling for stress and related issues (I really think this is making me crazy - I am becoming manic/depressive), and genetic testing. Today I was informed that the earliest appointments for these things would be after Dec. 15. Really?! Why is all this not worked on before I get here? I can't hang around until the 15th!
We'll visit MDA one more time tomorrow to pick up paperwork to bring to Dr. Beck at home...recommendations for chemo and tests that should be run, doctor's notes, that sort of thing. Tomorrow evening we will head north to stay with my brother-in-law and sis-in-law in their vacation cabin in Rusk, then head back to good ol' NWA on Sunday.
I'm so ready to get back home and out of Cancerland. I do not like it here.
For more info on TNBC:
Triple Negative Breast Cancer Foundation
http://www.tnbcfoundation.org/
I don't really know what I expected, but, according to my mood, I must have expected a lot more than I got.
Just seeing the doctor yesterday was an ordeal. My time for registration was 4:00 and we were to see the doctor at 5:00. Since we were there early, we actually got in early, so things were looking good. I was measured, weighed, temp and blood pressure taken, stripped, then gowned from the waist up, brought a toasty warm blanket, and then parked in a room to wait.
and wait..........
and wait..........
and wait..........
We probably sat there for almost two hours. After driving all day and arriving early for our 5:00 (pm!!) appointment, this was seriously wearing on my last nerve.
After the first hour I was beginning to think we'd been forgotten, so David wandered out into the hall to find out what was going on. He found someone who checked for us and, of course, we hadn't been forgotten...doc had just had a "really tough clinic" that day and would be with us shortly.
Uh huh.
So we continued to wait. Eventually, we heard people saying their goodbyes and shutting things down out at the front desk and I know the nighttime cleaning crew was working in the rooms up and down the hallway. David nodded off for a good 20 minutes or more. We were exhausted.
After driving all that way, it's not like we could just get up and storm out, is it? However, when the doctor finally arrived, I kind of wished we had.
This is what we learned:
1) Dr. Pusztai recommended a specific type of chemotherapy regimen. The exact same regimen that Dr. Nagourney from Rational Therapeutics recommended. The kind that my tumor had an "intermediate" reaction to...not ideal. Specifically, for anyone interested, the chemo drugs recommended are a combination of Gemsitabine and Carboplatin (or Cisplatin). As he said, this regimen has shown to be effective in a "subset" of Triple Negative breast cancers. That's the best they can do.
Triple Negative Breast Cancer is not common. About 12-17% of breast cancers are TN. There has not been a lot of study and therefore not a lot of drug choices in treating this type of cancer. TNBC has a very high probability of recurrence in other parts of the body. If it does recurr, things typically get much worse. The mortality rate of TNBCs is very high.
They are currently performing a clinical trial with some success for TNBC patients using something called PARP Inhibitors. However, to qualify for this trial, one's TNBC must have metastasized. I do not qualify, and, God willing, I never will.
2) The fact that I am now Triple Negative as opposed to the ER+/PR+ shown on the original pathology report does not mean my cancer changed. It means that the original path report was wrong. Somebody at the Fayetteville lab screwed up. The group of MDA pathologists who looked at the original slides reported it to be triple neg right from the start. No mutations or weirdness...just really bad cells and a really bad path reading.
3) The fact that, from the beginning, I had TNBC does not mean I was treated with the wrong drugs. In fact, the chemo I received would have been an appropriate regimen to try with TNBC. Sadly, it did not work with me, as it doesn't with about 2-3 percent of women. I'm sick of being in that minute percentage...except I do intend to be in the minute percentage of women whose TNBC never returns. Please, God.
4) Doctor Pusztai recommended I get several scans, xrays, other images of various body parts to make sure the cancer is not elsewhere, which we do NOT expect it to be. These images will also be baseline images in case the cancer does reappear. Which it will NOT be doing. We were going to do this here and follow up with an MDA doc, but I have decided that these tests can all be done at home and read by my own doctors just as easily.
In fact, I am wondering why we were told to be here at all. This all seems like it could've been taken care of via phone and fax.
So, yes, I was a bit disappointed in the whole thing. He was not terribly encouraging and I really thought he would have more recommendations about what they could do for me here (whole person sort of thing...diet, exercise, mental health, stress, sleep...the sort of thing I read in their literature). I asked for an appointment with a dietician, counseling for stress and related issues (I really think this is making me crazy - I am becoming manic/depressive), and genetic testing. Today I was informed that the earliest appointments for these things would be after Dec. 15. Really?! Why is all this not worked on before I get here? I can't hang around until the 15th!
We'll visit MDA one more time tomorrow to pick up paperwork to bring to Dr. Beck at home...recommendations for chemo and tests that should be run, doctor's notes, that sort of thing. Tomorrow evening we will head north to stay with my brother-in-law and sis-in-law in their vacation cabin in Rusk, then head back to good ol' NWA on Sunday.
I'm so ready to get back home and out of Cancerland. I do not like it here.
For more info on TNBC:
Triple Negative Breast Cancer Foundation
http://www.tnbcfoundation.org/
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