In my previous post I mentioned having a few setbacks. These are not physical setbacks. The setbacks I refer to are more mental and emotional. These involve knowledge and information concerning my cancer. Knowledge that things are not as simple as originally thought.
I had a bad feeling about this when I realized my original chemotherapy regimen (TAC) was not working. My cancer was growing, despite the fact that I had been told that it was not uncommon for my type of tumor to completely disappear (yes, disappear) when treated with that particular chemo regimen.
Talk about riding the cancer roller coaster. Have I mentioned? I hate this ride.
So, as discussed in previous posts, the results from my tumor profiling done by Rational Therapeutics (showing my tumor to be highly resistant to all normal chemo regimens), my high Oncotype score (showing my recurrence rate to be extremely high), and the most recent blow, to find out that the biopsy following the surgery showed my tumor to have changed...morphed...mutated...whatever (from ER+/PR+/HER- to the dreaded Triple Negative...ER-/PR-/HER-), have all worked together to pull that comfortable rug called the future right out from under me.
But just because that rug was pulled out from under me and I landed on my backside, does not mean I just sit there on the cold ground. I'm back up and fighting. I'm looking for nails to hammer that rug back down so it does not get pulled out from under me again. At least not so easily.
The roller coaster and the rug; mixed metaphors at their best.
To help with this fight, David and I are heading out for Houston tomorrow to pay a visit to the specialists at MD Anderson Cancer Center. My pre-Thanksgiving gift was a call from Julissa at MDA saying she had been able to find an earlier appointment for me, two weeks earlier than previously scheduled. So yay to that.
Today I get to run around NWA picking up medical record, films, and CDs full of images and other information. I have reams of paperwork to fill out and bags to pack.
We've been told to expect to be in the Houston area at least a week. JC and Sean will be holding down the fort while we're gone, with the help of Cleo and Harry. And Megan. And that better be all.
Needless to say, I'm looking forward to hearing what they recommend for me. I'm hoping Dr. Beck is right. He said that, even though he has never seen a case like mine, I would not be quite so uncommon at MDA. Let's hope not. They rank as the #1 cancer center in the United States (so doesn't that mean the world), which is comforting.
Houston, here we come.
And thank the good Lord it's not August.
Monday, November 29, 2010
Moving Forward
Been a bit silent lately, and I've thoroughly enjoyed it. I think I reached a point where I just couldn't talk about myself anymore. Didn't want to think about it...talk about it...share my feelings and thoughts. Pretending things are "normal" and nothing has changed since the last Thanksgiving.
Of course, when I stand before the mirror, hatless and unclothed, I am quickly reminded that things, indeed, have changed since last year. I look like a character from a sci-fi movie. The one with a shaved head, unibreast, 10 inch scar, and a port and catheter protrusion under the collarbone. Am I the good guy or bad? It's hard to tell. I kind of want to be the bad guy...the one who's slightly psycho, with a wicked gun and a wicked determination to kill any cancer that gets in her way.
Make that the good guy...cancer is the bad guy.
I do look a bit intimidating though, especially now that my hair has started to come in...and is very dark. Even the eyebrows, that had thinned out more than I realized, are coming in darker than before.
At least the drain is gone. That left a week ago and, after 3 1/2 weeks with that little surgery souviner, I was a happy girl when they informed me they were going to pull it. And pull it they did. Thankfully, and considering there was a good 12 inches of tubing under by skin, I didn't feel a thing. It helps that I've lost so much feeling on that side.
Dr. Cross warned me, though, that since I'm so thin and the drain was continuing to put out more fluid than they wanted to see, I should expect fluid to build up under my skin and NOT TO WORRY! "Fluid can NOT hurt you." He was pretty adamant that if fluid did build up, I should not be calling him in a panic at midnight. Seriously? Do I look like the panicking kind?
I think it was time for that drain to go...I had absolutely no fluid build up under my skin. So buh-bye and good riddance to that thing. (And hello to showers and sleeping on my left side - I love my left side.)
I'm beginning to get a more normal range of motion in my left arm. I still cannot lift it like my right arm, but it's just good to know things are improving.
My energy level is much improved. I spent a good bit of Thanksgiving in the kitchen and doing normal activities around the house, which was one of many things I gave thanks for on that day (and everyday).
I've had a few setbacks lately and things are not going as perfectly as I would like, but overall I am feeling great, moving forward, and determined to continue fighting this so I can celebrate many more Thanksgivings with my family...giving thanks for the greatest of blessings. Life.
Of course, when I stand before the mirror, hatless and unclothed, I am quickly reminded that things, indeed, have changed since last year. I look like a character from a sci-fi movie. The one with a shaved head, unibreast, 10 inch scar, and a port and catheter protrusion under the collarbone. Am I the good guy or bad? It's hard to tell. I kind of want to be the bad guy...the one who's slightly psycho, with a wicked gun and a wicked determination to kill any cancer that gets in her way.
Make that the good guy...cancer is the bad guy.
I do look a bit intimidating though, especially now that my hair has started to come in...and is very dark. Even the eyebrows, that had thinned out more than I realized, are coming in darker than before.
At least the drain is gone. That left a week ago and, after 3 1/2 weeks with that little surgery souviner, I was a happy girl when they informed me they were going to pull it. And pull it they did. Thankfully, and considering there was a good 12 inches of tubing under by skin, I didn't feel a thing. It helps that I've lost so much feeling on that side.
Dr. Cross warned me, though, that since I'm so thin and the drain was continuing to put out more fluid than they wanted to see, I should expect fluid to build up under my skin and NOT TO WORRY! "Fluid can NOT hurt you." He was pretty adamant that if fluid did build up, I should not be calling him in a panic at midnight. Seriously? Do I look like the panicking kind?
I think it was time for that drain to go...I had absolutely no fluid build up under my skin. So buh-bye and good riddance to that thing. (And hello to showers and sleeping on my left side - I love my left side.)
I'm beginning to get a more normal range of motion in my left arm. I still cannot lift it like my right arm, but it's just good to know things are improving.
My energy level is much improved. I spent a good bit of Thanksgiving in the kitchen and doing normal activities around the house, which was one of many things I gave thanks for on that day (and everyday).
I've had a few setbacks lately and things are not going as perfectly as I would like, but overall I am feeling great, moving forward, and determined to continue fighting this so I can celebrate many more Thanksgivings with my family...giving thanks for the greatest of blessings. Life.
Thursday, November 18, 2010
Oncotype DX: Disappointing Results and Discrepancies
Last Friday I received a disappointing call from Kristen, Dr. Cross's nurse. It was concerning my score on the Oncotype DX lab test. Anything over 30 means I have a high possibility for recurrence. I got a 54. Ouch.
So this week my visit with my oncologist, Dr. Beck, took a serious turn (not that things haven't been serious - I'm getting tired of all this seriousness). With my disappointing results from Rational Therapeutics in hand and the knowledge of that high Oncotype score, I sat before him and waited to hear the game plan. I had tons of questions concerning the discrepancies I saw on the chemo recommendations from Rational Therapeutics, many of which he, too, did not understand or necessarily agree with.
Then he informed me that, according to the newest pathology report from the Oncotype testing, the hormone receptivity on my tumor had CHANGED! What the...?? Changed? Seriously?!
The report from the Oncotype report showed it to be ER/PR negative, as opposed to the original biopsy that showed my tumor to be ER/PR positive. My tumor had changed! How is that possible?
His hypothesis on this whole conundrum was that the original needle core biopsy only showed a small section of the tumor, which apparently had positive hormone receptivity, while other sections may have been growing differently. Then the chemo regimen I was on, which was specifically for ER/PR positive breast cancer, possibly did kill those cells, which, in turn, allowed the ER/PR negative cells to grow...at least that's the way I understand his explanation (or more like his guess).
Of course, I queried Dr. Google about this. He has been less helpful than normal. In fact, it seems he knows nothing. This is beyond frustrating and not a little bit irritating.
A part of me wonders if someone screwed up the original pathology report. Several weeks ago, when I realized my tumor was growing as opposed to shrinking, I actually asked Dr. Cross if that was a possibility and he promised me it was not. And to be truthful, I remember that first 10 days or so after I started chemo thinking that my tumor felt smaller and I know it quit hurting for a while, so maybe Dr. Beck's hypothesis is correct.
Whatever the case, once again I have been told how strange this all is. Dr. Beck now says he has NEVER had a case like mine. That is not something to be proud of. That's what you do NOT want to hear from your oncologist...ever.
I asked him about going to MD Anderson and he was all for it. He said that's what he would do and that, even though I am a strange case, he seemed to think I wouldn't be quite so strange down there. So it looks like, at some point in the near future, David and I will be driving to Houston for several days. MDA called me yesterday to set up everything. I was hoping to head out asap, but their first available appointment is December 13. They are trying to find an earlier date, so we are praying for that. I return to school in January and would really like to get this trip behind me and get a couple of rounds of chemo under my belt...before I'm back in school. And before more cancer has the chance to start growing.
 |
| Picture me looking something like this as you read this blog. Grrrr. |
Last Friday I received a disappointing call from Kristen, Dr. Cross's nurse. It was concerning my score on the Oncotype DX lab test. Anything over 30 means I have a high possibility for recurrence. I got a 54. Ouch.
So this week my visit with my oncologist, Dr. Beck, took a serious turn (not that things haven't been serious - I'm getting tired of all this seriousness). With my disappointing results from Rational Therapeutics in hand and the knowledge of that high Oncotype score, I sat before him and waited to hear the game plan. I had tons of questions concerning the discrepancies I saw on the chemo recommendations from Rational Therapeutics, many of which he, too, did not understand or necessarily agree with.
Then he informed me that, according to the newest pathology report from the Oncotype testing, the hormone receptivity on my tumor had CHANGED! What the...?? Changed? Seriously?!
The report from the Oncotype report showed it to be ER/PR negative, as opposed to the original biopsy that showed my tumor to be ER/PR positive. My tumor had changed! How is that possible?
His hypothesis on this whole conundrum was that the original needle core biopsy only showed a small section of the tumor, which apparently had positive hormone receptivity, while other sections may have been growing differently. Then the chemo regimen I was on, which was specifically for ER/PR positive breast cancer, possibly did kill those cells, which, in turn, allowed the ER/PR negative cells to grow...at least that's the way I understand his explanation (or more like his guess).
Of course, I queried Dr. Google about this. He has been less helpful than normal. In fact, it seems he knows nothing. This is beyond frustrating and not a little bit irritating.
A part of me wonders if someone screwed up the original pathology report. Several weeks ago, when I realized my tumor was growing as opposed to shrinking, I actually asked Dr. Cross if that was a possibility and he promised me it was not. And to be truthful, I remember that first 10 days or so after I started chemo thinking that my tumor felt smaller and I know it quit hurting for a while, so maybe Dr. Beck's hypothesis is correct.
Whatever the case, once again I have been told how strange this all is. Dr. Beck now says he has NEVER had a case like mine. That is not something to be proud of. That's what you do NOT want to hear from your oncologist...ever.
I asked him about going to MD Anderson and he was all for it. He said that's what he would do and that, even though I am a strange case, he seemed to think I wouldn't be quite so strange down there. So it looks like, at some point in the near future, David and I will be driving to Houston for several days. MDA called me yesterday to set up everything. I was hoping to head out asap, but their first available appointment is December 13. They are trying to find an earlier date, so we are praying for that. I return to school in January and would really like to get this trip behind me and get a couple of rounds of chemo under my belt...before I'm back in school. And before more cancer has the chance to start growing.
Friday, November 12, 2010
Seasons, Lab Reports, and Riding the Cancer Roller Coaster
I've lived in a number of different places in my life, but none matches the beauty of Northwest Arkansas in the fall. In my opinion, we have had a particularly beautiful autumn this year. I've loved seeing the leaves turn crimson, orange, yellow, and magenta. The red maples are especially gorgeous. I do love this season and I'm in dire need of a drive to Eureka or along the Pig Trail.
But there is something about this season that brings sadness to me, and lately I have found this feeling seeping into me even more than usual. As I watch the maples in my front yard turn bright yellow, and enjoy the beauty of the sun shining through their lucent leaves, I feel light and happy and at peace. Yet, I have that undercurrent of knowledge that this beauty is oh...so temporary.
Of course, we all know the parallel the seasons have to our lives. Spring, summer, autumn, winter...new beginnings and growth that lead, inevitably, to death, dying, and decay. So depressing, when you think about it like that. I really hate thinking in those terms, especially not when I feel like I'm still in the summer of my life, but time tells me it's moving more towards autumn. As much as I love autumn, I, personally, don't want to be there. Why? Because winter comes next.
This week, though, I've had this horrible and niggling feeling that maybe I won't get to see the entire autumn and winter of my life. What if I don't make it to be that grey haired li'l ol' lady puttering in her yard? And then I find myself WANTING to be that li'l ol' lady. Suddenly the idea of getting old is not so bad. As everyone always says, it's better than the alternative. And suddenly, as I find myself thinking that maybe I will be facing the "alternative"...by golly, I want to get OLD.
This attitude - that of not making it - is NOT like me, and when I get like this I want OUT of it.
So what the heck brought on this not-so-rosy outlook, you may ask? I think it has a lot to do with the results that I received from Rational Therapeutics the other day...the results of my tumor profiling. When I read their report, and did a bit of Googling (lots of Greek to decipher), it became apparent that my tumor is resistant to just about every kind of chemo regimen out there. The regimen they recommended is NOT a normal recommendation for breast cancer. When I read this and it began to sink in, the possible reality of my future hit me...and not in a good way.
With a bit of apprehension, I looked forward to my appointment with my oncologist, Dr. Beck, yesterday. I wanted to hear his take on this report.
First of all, I was not happy to hear an apology from his sweet nurse, even though I know she was just being kind and saying exactly what I would have said in her shoes. But medical people keep apologizing to me, and I'm getting tired of it. When someone apologizes lately, this is what I hear:
"I'm so sorry...we're really trying to help you, but we just can't."
I know that's not what they're saying, but that's what I'm hearing.
This is what I want to hear:
"Well, shucks. That didn't work? Don't you worry about a thing. We're going to kick this cancer's butt and you're going to be just fine!"
Do I want them to lie to me? Maybe...sometimes...just a little bit.
So, when I finally spoke with Dr. Beck yesterday, I wanted reassurance and positive feedback. And I think I mostly got it. I did leave feeling much better. I know I'll be here a while longer. At the very least, years. Hopefully many years. Many, many years. (Okay, now I'm embellishing--none of us have that guarantee.)
He said that the fact that the cancer did not show in my nodes was "favorable". Favorable? I know that's a doctor's way of covering their behind, but I wanted more than "favorable". If I told my students their art work was "favorable", they would not be impressed. So I told Dr. Beck exactly that. I said I did not care for that word. I wanted to hear "fantastic!" or "excellent!", but "favorable" just wasn't ringing my bell. He laughed and agreed and made me happy by saying that, of course, it WAS indeed excellent news that my nodes were clear. Thank you. That's much better.
Because of that fact, he said I did not need a PET scan or any other testing, for the time being. One thing he did comment on that did not make me happy was concerning the rarity of my cancer. He said in the 20 plus years that he has been practicing, he has only seen 2 or 3 other women with my type of tumor who did not respond to my original regimen of chemo (TAC). And my response to that information? I'm not even going there.
To make this long story a bit shorter, Dr. Beck decided to wait on a decision concerning what exactly to do with me. I have one more major lab test that we are waiting on, the Oncotype DX. This test determines several things, including the actual need for future chemotherapy and, most importantly, the possibility for recurrence. Once these results are in (next week, we think) he will let me know where we go from here.
They did call and set me up to see the radiation people next week. I'm on the borderline for needing that (has to do with tumor size), so I'm thinking I will get to experience that side of cancer treatment in the near future.
So, that's where my recent melancholia has come from, I'm pretty sure. These emotional ups and downs are tiring and I, at times, feel like I'm on some kind of sick roller coaster of emotion. Fear and anxiety---hope and peace---fear and anxiety---hope and peace. Up, down, up, down, up. This is getting old. Someone stop this ride, I'd like to get off.
Thank the good Lord, though, I AM feeling more like the perky Patti that is my norm. The tears (once again) have subsided and I'm feeling hopeful again. I am beginning to understand that, for the remainder of my life, I will be watching over my shoulder for that dark cloud of cancer. But, I intend to walk in the sunshine as much as I possibly can while I'm here. I intend to count that dark cloud as a blessing. It is helping me realize something that I've known in my head, but never had the opportunity to actually feel. And that is the fact that each and every day is a gift and that I need to make the most of each one. I need to make sure those I love know I love them...every single day.
That dark cloud allows me to see more clearly the temporariness of my existence and to give thanks for the knowledge that, though my time here is very short, when the end does come, it is actually just a new beginning.
As these seasons change and winter creeps closer every day, I will enjoy the blessing of watching that change, knowing that spring will follow. Refreshing, renewing and regenerating spring. Life continues and I intend to continue along with it, being confident in my future, whatever it may bring.
Now faith is confidence in what we hope for and assurance about what we do not see. Hebrews 11:1
You are my hiding place; you will protect me from trouble and surround me with songs of deliverance. Psalm 32:7
But there is something about this season that brings sadness to me, and lately I have found this feeling seeping into me even more than usual. As I watch the maples in my front yard turn bright yellow, and enjoy the beauty of the sun shining through their lucent leaves, I feel light and happy and at peace. Yet, I have that undercurrent of knowledge that this beauty is oh...so temporary.
Of course, we all know the parallel the seasons have to our lives. Spring, summer, autumn, winter...new beginnings and growth that lead, inevitably, to death, dying, and decay. So depressing, when you think about it like that. I really hate thinking in those terms, especially not when I feel like I'm still in the summer of my life, but time tells me it's moving more towards autumn. As much as I love autumn, I, personally, don't want to be there. Why? Because winter comes next.
This week, though, I've had this horrible and niggling feeling that maybe I won't get to see the entire autumn and winter of my life. What if I don't make it to be that grey haired li'l ol' lady puttering in her yard? And then I find myself WANTING to be that li'l ol' lady. Suddenly the idea of getting old is not so bad. As everyone always says, it's better than the alternative. And suddenly, as I find myself thinking that maybe I will be facing the "alternative"...by golly, I want to get OLD.
This attitude - that of not making it - is NOT like me, and when I get like this I want OUT of it.
So what the heck brought on this not-so-rosy outlook, you may ask? I think it has a lot to do with the results that I received from Rational Therapeutics the other day...the results of my tumor profiling. When I read their report, and did a bit of Googling (lots of Greek to decipher), it became apparent that my tumor is resistant to just about every kind of chemo regimen out there. The regimen they recommended is NOT a normal recommendation for breast cancer. When I read this and it began to sink in, the possible reality of my future hit me...and not in a good way.
With a bit of apprehension, I looked forward to my appointment with my oncologist, Dr. Beck, yesterday. I wanted to hear his take on this report.
First of all, I was not happy to hear an apology from his sweet nurse, even though I know she was just being kind and saying exactly what I would have said in her shoes. But medical people keep apologizing to me, and I'm getting tired of it. When someone apologizes lately, this is what I hear:
"I'm so sorry...we're really trying to help you, but we just can't."
I know that's not what they're saying, but that's what I'm hearing.
This is what I want to hear:
"Well, shucks. That didn't work? Don't you worry about a thing. We're going to kick this cancer's butt and you're going to be just fine!"
Do I want them to lie to me? Maybe...sometimes...just a little bit.
So, when I finally spoke with Dr. Beck yesterday, I wanted reassurance and positive feedback. And I think I mostly got it. I did leave feeling much better. I know I'll be here a while longer. At the very least, years. Hopefully many years. Many, many years. (Okay, now I'm embellishing--none of us have that guarantee.)
He said that the fact that the cancer did not show in my nodes was "favorable". Favorable? I know that's a doctor's way of covering their behind, but I wanted more than "favorable". If I told my students their art work was "favorable", they would not be impressed. So I told Dr. Beck exactly that. I said I did not care for that word. I wanted to hear "fantastic!" or "excellent!", but "favorable" just wasn't ringing my bell. He laughed and agreed and made me happy by saying that, of course, it WAS indeed excellent news that my nodes were clear. Thank you. That's much better.
Because of that fact, he said I did not need a PET scan or any other testing, for the time being. One thing he did comment on that did not make me happy was concerning the rarity of my cancer. He said in the 20 plus years that he has been practicing, he has only seen 2 or 3 other women with my type of tumor who did not respond to my original regimen of chemo (TAC). And my response to that information? I'm not even going there.
To make this long story a bit shorter, Dr. Beck decided to wait on a decision concerning what exactly to do with me. I have one more major lab test that we are waiting on, the Oncotype DX. This test determines several things, including the actual need for future chemotherapy and, most importantly, the possibility for recurrence. Once these results are in (next week, we think) he will let me know where we go from here.
They did call and set me up to see the radiation people next week. I'm on the borderline for needing that (has to do with tumor size), so I'm thinking I will get to experience that side of cancer treatment in the near future.
So, that's where my recent melancholia has come from, I'm pretty sure. These emotional ups and downs are tiring and I, at times, feel like I'm on some kind of sick roller coaster of emotion. Fear and anxiety---hope and peace---fear and anxiety---hope and peace. Up, down, up, down, up. This is getting old. Someone stop this ride, I'd like to get off.
Thank the good Lord, though, I AM feeling more like the perky Patti that is my norm. The tears (once again) have subsided and I'm feeling hopeful again. I am beginning to understand that, for the remainder of my life, I will be watching over my shoulder for that dark cloud of cancer. But, I intend to walk in the sunshine as much as I possibly can while I'm here. I intend to count that dark cloud as a blessing. It is helping me realize something that I've known in my head, but never had the opportunity to actually feel. And that is the fact that each and every day is a gift and that I need to make the most of each one. I need to make sure those I love know I love them...every single day.
That dark cloud allows me to see more clearly the temporariness of my existence and to give thanks for the knowledge that, though my time here is very short, when the end does come, it is actually just a new beginning.
As these seasons change and winter creeps closer every day, I will enjoy the blessing of watching that change, knowing that spring will follow. Refreshing, renewing and regenerating spring. Life continues and I intend to continue along with it, being confident in my future, whatever it may bring.
Now faith is confidence in what we hope for and assurance about what we do not see. Hebrews 11:1
You are my hiding place; you will protect me from trouble and surround me with songs of deliverance. Psalm 32:7
Sunday, November 7, 2010
Eldersitting: Two Peas in a Pod
Doctor's orders: my dad should not be left alone.
He needs someone with him 24/7. So guess what I did this weekend? Yep, I eldersat. Not just me, but my brother and my husband and Vickie tag teamed at Dad's house and made sure he was okay, took his meds, ate, and most importantly...did not fall down. We will spend this week working out some kind of round the clock care for him. The easy thing to do would be to "put him in a home", as he says. He does NOT want this, and neither do we. He would be lost and devastated if this happened, and so would we, so we are doing all we can to make sure he is safe in his own comfortable, secure, and memory-filled home.
The aggravating thing is...well, me and my body. I spent several hours at Dad's house yesterday and several more today, breaking doctor's orders by driving there (please don't tell). I admit, I was quite surprised at how much one needs their left arm when driving. When sharp turns = sharp pains, that's not good. But, I promise I was careful. Drove just like a granny.
My eldersitting job was a bit of a joke, though, since it seemed a case of the infirm watching the infirm. If he had fallen on my watch, I would've just gone down with him. But at least I'd have one good arm with which to dial for help.
If you had stopped in to visit my dad this weekend, there's a good chance you would find a couple of feeble and dozing bodies reclining side-by-side in Lazy Boys. Two peas in a pod.
Today, though, I was determined to accomplish something. So, with David's help, I managed to stop by Lowe's and Walmart to purchase Dad a much needed new dishwasher (to replace his antique 1970's model) and vacuum cleaner (his sucked - or rather, it didn't). This seemed like a simple task and I thought it would be good to actually act like a normal person, but found myself seeking a chair while waiting for paperwork to be done in Lowe's, then hanging onto the cart in Walmart and longing to get the heck out of there.
Of course, a new vacuum needs to be tested, which turned into vacuuming most of his house. This was a bit too much and makes me think that my body is not the only thing that is feeble right now. By the time I got home today I was shaky and weak and felt feverish. Had I done too much? Duh. Just because I think I can, doesn't mean I should. How stupid to choose to do something that could very well set me back even more. If my mom were here, she'd set me straight, I'm sure.
I know I'm impatient and want to feel normal again, but pushing it isn't going to make that happen. On the contrary. The sharp pains under my left arm and the tinge of blood I'm seeing in my drain tells me differently. I think I'd better start listening to my body and common sense and remember that "no pain, no gain" is a bunch of bunk.
This may not be the last time this week that I get to eldersit my dad, but if I do, I'll be more careful to act his age than I do mine. Surely I can handle that Lazy Boy and leave the errands and chores to the young-uns.
He needs someone with him 24/7. So guess what I did this weekend? Yep, I eldersat. Not just me, but my brother and my husband and Vickie tag teamed at Dad's house and made sure he was okay, took his meds, ate, and most importantly...did not fall down. We will spend this week working out some kind of round the clock care for him. The easy thing to do would be to "put him in a home", as he says. He does NOT want this, and neither do we. He would be lost and devastated if this happened, and so would we, so we are doing all we can to make sure he is safe in his own comfortable, secure, and memory-filled home.
The aggravating thing is...well, me and my body. I spent several hours at Dad's house yesterday and several more today, breaking doctor's orders by driving there (please don't tell). I admit, I was quite surprised at how much one needs their left arm when driving. When sharp turns = sharp pains, that's not good. But, I promise I was careful. Drove just like a granny.
My eldersitting job was a bit of a joke, though, since it seemed a case of the infirm watching the infirm. If he had fallen on my watch, I would've just gone down with him. But at least I'd have one good arm with which to dial for help.
If you had stopped in to visit my dad this weekend, there's a good chance you would find a couple of feeble and dozing bodies reclining side-by-side in Lazy Boys. Two peas in a pod.
Today, though, I was determined to accomplish something. So, with David's help, I managed to stop by Lowe's and Walmart to purchase Dad a much needed new dishwasher (to replace his antique 1970's model) and vacuum cleaner (his sucked - or rather, it didn't). This seemed like a simple task and I thought it would be good to actually act like a normal person, but found myself seeking a chair while waiting for paperwork to be done in Lowe's, then hanging onto the cart in Walmart and longing to get the heck out of there.
Of course, a new vacuum needs to be tested, which turned into vacuuming most of his house. This was a bit too much and makes me think that my body is not the only thing that is feeble right now. By the time I got home today I was shaky and weak and felt feverish. Had I done too much? Duh. Just because I think I can, doesn't mean I should. How stupid to choose to do something that could very well set me back even more. If my mom were here, she'd set me straight, I'm sure.
I know I'm impatient and want to feel normal again, but pushing it isn't going to make that happen. On the contrary. The sharp pains under my left arm and the tinge of blood I'm seeing in my drain tells me differently. I think I'd better start listening to my body and common sense and remember that "no pain, no gain" is a bunch of bunk.
This may not be the last time this week that I get to eldersit my dad, but if I do, I'll be more careful to act his age than I do mine. Surely I can handle that Lazy Boy and leave the errands and chores to the young-uns.
Thursday, November 4, 2010
Dad: Sweet Story and an Angry Rant
I've been dreaming about my mom a lot lately. She's been gone from this world for over 13 years now. I don't know if it's the undying desire that so many of us have when we are sick and in need or not. That desire...yes, I'll admit it...that I would still like to have my mother take care of me.
Just as she loved serving me and making me feel better, she did the same for my dad. Dad's health has gone downhill considerably in the past months. If Mom were still here, we all know that would not be the case. She would have kept his mind and body active, as opposed to his choice of slowly letting things go since she's been gone...volunteer work, recreational activities, church activities, and church attendance have all gone by the wayside. He has decided that if he can't do those activities with Mom, then those activities aren't worth doing. Because of this, he has gradually become weaker, and thus more and more physically dependant on others. And because of this, he now has a wonderful caretaker who spends each day with him, making sure he has his medication, is well fed, and remains somewhat active.
Vickie joined our family as Dad's caretaker not long before I left for China. I don't know if I could have gone without knowing she was with him. I remember preparing for the trip and praying that Dad would still be here when I returned. He kept telling me he would not...and that it would be a good thing.
Things have changed for the better in the past months, though, thanks to Vickie. His medication has been monitored and more carefully administered, which has helped his low moods, irrational behavior, loss of attention span and, with new medication, even improved his memory. Vickie has been a gift from God. She and Dad have bonded and we can think of no one else we would trust with him as much as we do Vickie. To Dad, she is like a daughter. We have seen some of his old self coming out in the past few weeks, which has been such a blessing, especially in light of my current medical issues.
It has been a blessing not to be so totally consumed with taking care of Dad. Between Vickie on weekdays and me on weekends and some evenings, Dad has been doing great. Though my weekday/weekend visits are currently interrupted, Dad has been very understanding and concerned about me. He is patiently waiting for my healing, as am I. And, I admit, it also helps to have a wonderful husband who doesn't mind checking in on him.
One nice thing lately, something we've been wanting him to do for years, is that he has reached the point of desiring and acquiring a dog. An inside dog, no less. An inside dog named Gizmo that he allows to sleep in his bed! My mom would be so proud (after she checked to make sure he was really my dad).
So, to get a call today that he had fallen and was in the ER with Vickie was upsetting, to say the least. I know a lot of this upset had to do with the fact that I am feeling, at the moment, pretty worthless. Helpless and dependant and stuck at home with my staples and my drain and my sore body.
Here is the scoop: It seems when Vickie came into his house this morning, the first thing she saw were bloody towels on the floor. She ran into the kitchen to find him sitting in a chair with a bloody gash on the top of his head. He could not remember what had happened. He had already made coffee and, with a little homegrown CSI work, the guess is that he had prepared something to eat, attempted to return to the table with his food on the seat of his walker, spilled the food, either slipped on the spilled food or fell when trying to clean up the spill, and hit his head on the corner of a wooden cabinet. He would've had to go over head first, from where the gash was. My brother said it looked like a CSI crime scene, with blood everywhere. Vickie must have been terrified. We are thanking God for her tonight...and every night.
The hospital turned into a whole 'nother nightmare. They did run a few tests on Dad...scans, MRI, and whatnot, to make sure there were no broken bones or blood clots. But, apparently, they kept Dad there for hours without his medication (he had not taken his meds last night or this morning - could've been part of the falling problem), without food (he is diabetic), without help in hygiene needs, laid out on a small and uncomfortable ER bed on which he is too tall to be anything but miserable. According to my brother, Jay, it was almost surreal how bad the service was. They were insisting that Dad needed to stay at least a night or two, but doing nothing about it. They refused to feed him, due to any further testing they might want to do. Dad finally threw an angry fit (low blood sugar does that to him) and they gave in and brought him a sandwich. I have no idea why they wouldn't give him medication.
Jay said they only had one encounter of good bedside manners and helpfulness all day (by a young orderly - no doctor or nurse). Jay finally decided that the safest thing to do was to get Dad out of there. At that point, he said it was like trying to get away from a pushy car salesman. As in, "what can we do to get you in this hospital tonight?" They were even threatened with insurance not paying since they had refused treatment. Refused treatment? Seriously?! Tests had been run, nothing appeared wrong. Jay was right, Dad needed to be in his own bed with trustworthy people caring for him. We could both invision my confused and very agitated father, stuck alone in a hospital bed with uncaring staff. He needed to be home! So, our angel Vickie is staying with him tonight and tomorrow. Jay will be back tomorrow for a trip to the doctor and this weekend the Jones and Brigman men will be tag-teaming it at Dad's house.
I don't know how this whole thing will play out. Dad keeps telling me not to worry, that everything is going to be fine. One thing I do know, though, is that our hospital choices for Dad have changed. It will either be Washington Regional or the VA hospital the next time. I am sorely disappointed in the local hospital choice. The one that promises great service in the ER. Bull-oney.
When I am changing bandages and dealing with very personal healthcare issues, I know that there is no one (other than my husband - and maybe not even him) who I would like helping me more than my mom. Maybe it's just that mother-daughter connection, but, in my mind, no one would have the tender touch, the patience, and know what to say better than my mom. Will I ever think otherwise? I don't think so. I expect, even when I'm very old, hobbling around at the nursing home and in need of physical assistance, I will wish for my mom. Is that a legacy good mothers leave for their children? Maybe so.
This is not to insinuate that I am helpless or fall apart when I feel ill. On the contrary, I've always been perfectly capable of, and insisted on, taking care of myself...often to a fault. There just remains an underlying desire for that person who was my original caretaker. The person who made sure everything was okay, I was comfortable, well fed, and had everything I needed. I always knew she would make everything better. So yes, there have been many times over the years where I've longed for Mom.
I think the first time I really became aware of how much my mother's care meant to me was when I was in college, 2 states away from home, and became ill. I doctored myself because I had no other choice, but I still remember feeling like I wanted my mama (and feeling silly because of it). I never thought that would be something I would continue to think about so many years later, yet here I am.
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| Dad...probably telling one of his countless stories. He has some good ones. |
So, if I am going to go on and on about my mom, then why, you may ask, is the title of this post "Dad". Let's just say I'm working through that and hope to make sense of it by the end of this writing. Remember, I'm writing this for a number of reasons, one of them being that I was told it would be "therapeutic". And it is. So, if I want to write about my dad, I had to begin by writing about my recent thoughts of Mom. You see, those two go together. He has been lost without her for over 13 years now.
Vickie joined our family as Dad's caretaker not long before I left for China. I don't know if I could have gone without knowing she was with him. I remember preparing for the trip and praying that Dad would still be here when I returned. He kept telling me he would not...and that it would be a good thing.
Things have changed for the better in the past months, though, thanks to Vickie. His medication has been monitored and more carefully administered, which has helped his low moods, irrational behavior, loss of attention span and, with new medication, even improved his memory. Vickie has been a gift from God. She and Dad have bonded and we can think of no one else we would trust with him as much as we do Vickie. To Dad, she is like a daughter. We have seen some of his old self coming out in the past few weeks, which has been such a blessing, especially in light of my current medical issues.
It has been a blessing not to be so totally consumed with taking care of Dad. Between Vickie on weekdays and me on weekends and some evenings, Dad has been doing great. Though my weekday/weekend visits are currently interrupted, Dad has been very understanding and concerned about me. He is patiently waiting for my healing, as am I. And, I admit, it also helps to have a wonderful husband who doesn't mind checking in on him.
One nice thing lately, something we've been wanting him to do for years, is that he has reached the point of desiring and acquiring a dog. An inside dog, no less. An inside dog named Gizmo that he allows to sleep in his bed! My mom would be so proud (after she checked to make sure he was really my dad).
So, to get a call today that he had fallen and was in the ER with Vickie was upsetting, to say the least. I know a lot of this upset had to do with the fact that I am feeling, at the moment, pretty worthless. Helpless and dependant and stuck at home with my staples and my drain and my sore body.
Here is the scoop: It seems when Vickie came into his house this morning, the first thing she saw were bloody towels on the floor. She ran into the kitchen to find him sitting in a chair with a bloody gash on the top of his head. He could not remember what had happened. He had already made coffee and, with a little homegrown CSI work, the guess is that he had prepared something to eat, attempted to return to the table with his food on the seat of his walker, spilled the food, either slipped on the spilled food or fell when trying to clean up the spill, and hit his head on the corner of a wooden cabinet. He would've had to go over head first, from where the gash was. My brother said it looked like a CSI crime scene, with blood everywhere. Vickie must have been terrified. We are thanking God for her tonight...and every night.
The hospital turned into a whole 'nother nightmare. They did run a few tests on Dad...scans, MRI, and whatnot, to make sure there were no broken bones or blood clots. But, apparently, they kept Dad there for hours without his medication (he had not taken his meds last night or this morning - could've been part of the falling problem), without food (he is diabetic), without help in hygiene needs, laid out on a small and uncomfortable ER bed on which he is too tall to be anything but miserable. According to my brother, Jay, it was almost surreal how bad the service was. They were insisting that Dad needed to stay at least a night or two, but doing nothing about it. They refused to feed him, due to any further testing they might want to do. Dad finally threw an angry fit (low blood sugar does that to him) and they gave in and brought him a sandwich. I have no idea why they wouldn't give him medication.
Jay said they only had one encounter of good bedside manners and helpfulness all day (by a young orderly - no doctor or nurse). Jay finally decided that the safest thing to do was to get Dad out of there. At that point, he said it was like trying to get away from a pushy car salesman. As in, "what can we do to get you in this hospital tonight?" They were even threatened with insurance not paying since they had refused treatment. Refused treatment? Seriously?! Tests had been run, nothing appeared wrong. Jay was right, Dad needed to be in his own bed with trustworthy people caring for him. We could both invision my confused and very agitated father, stuck alone in a hospital bed with uncaring staff. He needed to be home! So, our angel Vickie is staying with him tonight and tomorrow. Jay will be back tomorrow for a trip to the doctor and this weekend the Jones and Brigman men will be tag-teaming it at Dad's house.
I don't know how this whole thing will play out. Dad keeps telling me not to worry, that everything is going to be fine. One thing I do know, though, is that our hospital choices for Dad have changed. It will either be Washington Regional or the VA hospital the next time. I am sorely disappointed in the local hospital choice. The one that promises great service in the ER. Bull-oney.
So how did I get from writing about my care-giving mom to my care-needing dad? Partly because I was dreaming about Mom when I got the call about Dad. And partly because she is still a part of who he is and I know, if she were still here, he and I would both feel a lot better. And one of us would not be in our current situation.
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| Jay and Dad... Like Father, Like Son |
Tuesday, November 2, 2010
First Follow Up Following Surgery
JC drove me to see Dr. Cross yesterday to get my bandages removed. Let's just say getting something off my chest definitely changed my appearance. Very strange. Thankfully, according to Dr. Cross and his nurse, everything looked great. No bruising, swelling, or redness. Staples are all holding and the drain is hanging in there...literally. Staples will be removed in about a week and a half, and the drain will hopefully go before then.
We had lots to talk about. They gave me a copy of the pathology report from the surgery. It makes for an interesting read, although can be quite odd reading so many details about a part of one's own body, including that foreign part that got me into this mess in the first place. Somehow, the clinical terminology in a report like this does help make it seem less personal and thus, less traumatic. The best wording on the whole report was the description of the 3 lymph nodes..."no evidence of malignancy" repeated three times. Love, love, love those words.
Of course, Dr. Cross was delighted that my lymph nodes were clear, but that doesn't mean I get to skip more chemotherapy. Exactly what kind will be determined once he gets the results from Rational Therapeutics (who, by the way, received my tumor the day following surgery and called to report that it was a "perfect" specimen. Now they are trying every sort of chemo combination with it to discovery which one kills it best). With my aggressive and high grade tumor, chemotherapy will insure that this cancer has not spread via the bloodstream (since we know the nodes are clear). Whether or not I will receive radiation is still to be determined. Also, due to a variety of criteria that I meet, some of my cancerous tissue will be sent away for Oncotype DX testing, which will help make future decisions in my treatment and overall prognosis. With all this testing going on, they should know exactly, without a doubt, what to do with me. Right? Let's hope so.
We briefly discussed my next surgery, which won't occur for quite a while. It will be for removal of the right breast, with reconstruction of both, and will most likely take place next summer. Dr. Cross is already contemplating how this will occur, considering that I am so thin and don't have a lot of spare flesh. He was trying to figure out how things will be moved around to adjust for this, then decided to worry about that at a later date. First things first.
Right now I am looking forward to the removal of this drain in my left side. Along with being seriously awkward, it's quite uncomfortable and can even be painful...sometimes to the point of feeling like I am being impaled with a rubber tube. Oh, wait...I am.
Overall, though, I am doing quite well, just really tired and still depending on an occasional Percocet to manage pain. I find it odd that I feel pain, when large areas of my left side and arm are completely numb, and, apparently, will be for some time...like maybe forever. (Seriously?!) I tend to wake up very stiff and sore and almost need someone to push me into an upright position. It's depressing how quickly I've lost muscle tone and strength during this whole thing. Just a few months ago I was in pretty good shape. I've got to start doing something about that...baby steps, I guess.
Baby steps, one day at a time, one hurdle at a time...all moving forward...away from cancer. Moving backwards is not allowed. As long as each step I take leads towards healing, I'm a happy camper.
We had lots to talk about. They gave me a copy of the pathology report from the surgery. It makes for an interesting read, although can be quite odd reading so many details about a part of one's own body, including that foreign part that got me into this mess in the first place. Somehow, the clinical terminology in a report like this does help make it seem less personal and thus, less traumatic. The best wording on the whole report was the description of the 3 lymph nodes..."no evidence of malignancy" repeated three times. Love, love, love those words.
Of course, Dr. Cross was delighted that my lymph nodes were clear, but that doesn't mean I get to skip more chemotherapy. Exactly what kind will be determined once he gets the results from Rational Therapeutics (who, by the way, received my tumor the day following surgery and called to report that it was a "perfect" specimen. Now they are trying every sort of chemo combination with it to discovery which one kills it best). With my aggressive and high grade tumor, chemotherapy will insure that this cancer has not spread via the bloodstream (since we know the nodes are clear). Whether or not I will receive radiation is still to be determined. Also, due to a variety of criteria that I meet, some of my cancerous tissue will be sent away for Oncotype DX testing, which will help make future decisions in my treatment and overall prognosis. With all this testing going on, they should know exactly, without a doubt, what to do with me. Right? Let's hope so.
We briefly discussed my next surgery, which won't occur for quite a while. It will be for removal of the right breast, with reconstruction of both, and will most likely take place next summer. Dr. Cross is already contemplating how this will occur, considering that I am so thin and don't have a lot of spare flesh. He was trying to figure out how things will be moved around to adjust for this, then decided to worry about that at a later date. First things first.
Right now I am looking forward to the removal of this drain in my left side. Along with being seriously awkward, it's quite uncomfortable and can even be painful...sometimes to the point of feeling like I am being impaled with a rubber tube. Oh, wait...I am.
Overall, though, I am doing quite well, just really tired and still depending on an occasional Percocet to manage pain. I find it odd that I feel pain, when large areas of my left side and arm are completely numb, and, apparently, will be for some time...like maybe forever. (Seriously?!) I tend to wake up very stiff and sore and almost need someone to push me into an upright position. It's depressing how quickly I've lost muscle tone and strength during this whole thing. Just a few months ago I was in pretty good shape. I've got to start doing something about that...baby steps, I guess.
Baby steps, one day at a time, one hurdle at a time...all moving forward...away from cancer. Moving backwards is not allowed. As long as each step I take leads towards healing, I'm a happy camper.
Monday, November 1, 2010
Getting Something Off My Chest
When I left my students last week for this extended sick leave, my 4th and 5th grade artists were in the middle of an idiom project. As we strive to integrate literature and language into the art room, each of these students chose a common American idiom which they have been illustrating...literally. Some of the most popular choices have included idioms such as "it's raining cats and dogs", "head in the clouds", and "butterflies in the stomach".
However, there was one particular idiom that caught my attention more than normal this year. Several of my artists chose to illustrate "get something off your chest". I've watched with great pleasure at my student's creativity in illustrating this idiom. I could totally relate to their literal interpretations; this is the idiom I would have chosen this year...no contest. And you can probably guess why.
Of these few illustrations, one that stood out in particular was that of someone frantically fighting a huge, hairy, fanged and clawing beast, as it fiercely hangs onto their chest. When I saw this depiction, I had to laugh, and thought, "By golly...I think that might be me." Of course, I didn't tell the artist that. That would've been a heavy concept to lay on a 10 year old.
Yes, for a long time I've felt like I had an evil creature attached to me...on my left breast, to be specific. Just like the subject of my student's illustration, I have wanted to fight and destroy it from the moment I found out it was there. So these many weeks knowing it was there...weeks that I had to live with it, sleep with it, eat with it, teach with it, and walk around with it have been long, unnerving, and, frankly, torturous, to say the least. I could not wait for the day when that alien creature was GONE!
As most of you know, last Wednesday was that day. My attacking beast has been vanquished and, I'm happy to say, I no longer feel like that monster is on my chest. It's been removed and destroyed.
My 5th grade artist will never know his illustration impacted me like that. I look forward to seeing his finished work of art and will try and post a pic of it here.
From now on when I say, "I need to get something off my chest," I expect it will mean something a little more to me than to most people. It's a great feeling to have won that beastly battle. Good riddance to my monster. May you never return!
However, there was one particular idiom that caught my attention more than normal this year. Several of my artists chose to illustrate "get something off your chest". I've watched with great pleasure at my student's creativity in illustrating this idiom. I could totally relate to their literal interpretations; this is the idiom I would have chosen this year...no contest. And you can probably guess why.
Of these few illustrations, one that stood out in particular was that of someone frantically fighting a huge, hairy, fanged and clawing beast, as it fiercely hangs onto their chest. When I saw this depiction, I had to laugh, and thought, "By golly...I think that might be me." Of course, I didn't tell the artist that. That would've been a heavy concept to lay on a 10 year old.
Yes, for a long time I've felt like I had an evil creature attached to me...on my left breast, to be specific. Just like the subject of my student's illustration, I have wanted to fight and destroy it from the moment I found out it was there. So these many weeks knowing it was there...weeks that I had to live with it, sleep with it, eat with it, teach with it, and walk around with it have been long, unnerving, and, frankly, torturous, to say the least. I could not wait for the day when that alien creature was GONE!
As most of you know, last Wednesday was that day. My attacking beast has been vanquished and, I'm happy to say, I no longer feel like that monster is on my chest. It's been removed and destroyed.
My 5th grade artist will never know his illustration impacted me like that. I look forward to seeing his finished work of art and will try and post a pic of it here.
From now on when I say, "I need to get something off my chest," I expect it will mean something a little more to me than to most people. It's a great feeling to have won that beastly battle. Good riddance to my monster. May you never return!
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