It has been less than a week since my last two entries, and I have not been able to stop thinking about what I wrote. Because, in some senses, my writings were wrong. Everything is NOT all about me. Not breast cancer, not breast cancer treatment, not life.
I wrote about wanting to know the purpose of this trial called cancer. I wrote that I knew it is ultimately for God's glory. That IS true. But I also wrote that I wanted the scroll to show me the good things, the great things, that would come from this. As I have mulled over my thoughts, I realized that my words could be misconstrued. Because it is quite possible that the outcomes that I will see and know about are not good in my estimation. Or the estimation of my family. My definition of "good" may not be the true definition, or God's definition. I am hopeful that we can see how the purpose of bringing glory to God has short-term good for us.
But what if I can't see good? What if the outcome is different than I want it to be? What then? Will God not be glorified because I don't like the outcome? NO.
I KNOW that good will come from this journey. What that good will be, and what it will look like, may remain a mystery for a long time. Perhaps forever in our timelines. Good WILL come. "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28
Of course, I want, hope, that the good is complete healing. Normal routine and life back in place. Health. Happiness. The American Dream. My ideas. My definition. I am slowly understanding, in my heart, that my "good" and true "good" may not be the same. So I am praying that my definition and understanding of "good" will be redefined to align with "true good".
I also wrote about being selfish in deciding whether or not to be bald or wear hats. No apologies for being selfish, or for being bald. Nope. Not sorry. My selfish-ness in this particular situation is more of a "sense" of self. Awareness of what I am willing or unwilling to deal with.
But, again, everything is NOT all about me.
All of which leads me to these next thoughts: so many of us wonder "what is God's will (or plan) for my life?" "What does God have for me to do?"
I believe that is backwards.
Because it is NOT about us.
I believe the real question is "How do I fit into God's plan?" It is all about HIM.
He tells us in His Word what He has for us to do.
"He has showed you, O man, what is good.
And what does the LORD require of you?
To act justly and to love mercy
and to walk humbly with your God." Micah 6:8
I wrote that I want to protect my babies' hearts. I do. So very much. I wrote that I am sad that I have no power to protect those precious hearts through the battle, or war, of cancer. I wrote that some days I am mad about being unable to protect them.
Most days, though, I realize that their Protector, and mine, is oh so much more able than I to protect, and heal, the hearts of my babies.
And my husband's.
And mine.
No matter what happens.
Tuesday, March 31, 2009
Thursday, March 26, 2009
Psycho vs Physical
Which comfort is more important?
I have discovered that, for me, it is definitely physical. I am willing to be bald in public because the physical discomfort of a wig and sometimes of a hat is too much for me. Not that I couldn't bear the discomfort. But the question has become, for me, "why should I bear the discomfort?"
It is becoming, really, ALL about me.
Pride? No. In fact, I hear often, now, how beautiful my head is. "So round!" "Not knobby!" "No bumps!" (And what if there were knobs and bumps? What then?)
Other people's obvious discomfort being in a room with baldy me? Sometimes.
The discomfort of others has been the most difficult. But I am slowly helping people I live with, work with, play with, come to terms with my baldness. Men are finding that they don't have to look at the floor or the walls when they come into my office to talk to me and find me at my desk without a hat. They can still look at my eyes and I don't melt! And neither do they! Amazing. School teachers are done with their second glances. Almost normal.
So, the usual decision point is temperature. If my head is cold, I wear a hat. If my head is hot, I don't wear a hat. I want physical comfort.
But this process, in retrospect, is fascinating to me. I realize how much we all bear sometimes very difficult physical discomforts in order to "fit in". Me too, still, in many ways. There is freedom in deciding it is all about me.
Selfish? Perhaps.
But that's o.k.
Because I am worth it!
I have discovered that, for me, it is definitely physical. I am willing to be bald in public because the physical discomfort of a wig and sometimes of a hat is too much for me. Not that I couldn't bear the discomfort. But the question has become, for me, "why should I bear the discomfort?"
It is becoming, really, ALL about me.
Pride? No. In fact, I hear often, now, how beautiful my head is. "So round!" "Not knobby!" "No bumps!" (And what if there were knobs and bumps? What then?)
Other people's obvious discomfort being in a room with baldy me? Sometimes.
The discomfort of others has been the most difficult. But I am slowly helping people I live with, work with, play with, come to terms with my baldness. Men are finding that they don't have to look at the floor or the walls when they come into my office to talk to me and find me at my desk without a hat. They can still look at my eyes and I don't melt! And neither do they! Amazing. School teachers are done with their second glances. Almost normal.
So, the usual decision point is temperature. If my head is cold, I wear a hat. If my head is hot, I don't wear a hat. I want physical comfort.
But this process, in retrospect, is fascinating to me. I realize how much we all bear sometimes very difficult physical discomforts in order to "fit in". Me too, still, in many ways. There is freedom in deciding it is all about me.
Selfish? Perhaps.
But that's o.k.
Because I am worth it!
Popular? Not Me.
I was not a popular mother today.
I insisted that Ellie and Rachel accompany me to my chemo treatment this afternoon. Neither one of the girls was very happy with me. Rachel had been to the clinic one other time when I went to get my neulasta injection. I was hopeful that they would be able to meet Jerry, even though I did not have an appointment with him. Jerry is gone all week on vacation, so that didn't work out.
It is important to me that my daughters are aware of at least some of the day to day aspects of my cancer treatment. If they never see the clinic, or the "infusion" room, I fear their imaginations may be worse than the reality. Perhaps, in their minds, the imaginations were safer. But I wanted them to know that the reality is o.k., too. That the weekly treatments are not awful physically. That the people who care for me there are nice, gentle, and concerned. I don't want my daughters overcome with fear when they think of breast cancer. That is why I had Rachel and Ellie feel my tumor/lump before surgery. That is why I have shown them my scars. Ellie asked me a few weeks ago if my breast will always be so flat. "Don't know...just have to wait and see!" I want my journey to be an open and transparent one for them.
I had Ellie come in with me to the lab and to the"vitals" area today. She got to see the one-inch needle put into the port. She was able to see the "model" port, and have a visual of what is inside my chest. She knew what it felt like under my skin, but now she knows what it actually looks like. She knows what really happens when my blood is drawn out of the port. She knows that I walk back to the waiting room with tubes hanging out of my sweater. She knows that there is a lot of waiting involved!
Don and the girls and I then headed upstairs to the infusion room. It was a ZOO! Lots of cranky little kids there with their parent or grandparent. Weird. More patients than normal. No normal patients (as in the regulars...) There were only three nurses working instead of the usual five, so it was crazy. Luckily, I got my treatment started fairly quickly.
My nurse described Jerry to the girls as "kind of a nutty professor. Very very smart. Looks like Jerry Garcia, or Osama Bin Laden". Great descriptions! Made us laugh. Ellie and Rachel stayed just until the i.v. fluids were started, then we let them leave to go home.
At one point, while we were waiting, Ellie asked me if there has been cancer in my family. "No, not before me". "Did your Mom have any cancer?" "No." "Could I get breast cancer because you have it?" "Yes, it can be inherited, but you'll have early and regular check-ups when you become a grown woman." "I don't want cancer...."
I wonder to myself, again, what God's purpose is in my babies having to confront cancer at 13, at 18, at 22. How can there be good out of this? They're too young. They're too sweet. They're too precious. Oh, how I want to protect their hearts. But I cannot. And that makes me sad. And, some days, that makes me mad.
The fact that I question the purpose does not negate that there is a purpose. I do believe. Actually, I KNOW there is a purpose.
And I generally know what it is.
That, through this, God will be glorified. But I want the details....I want that scroll that says "Drenda, by going through this, your family will be __________. " And I want the blanks all filled in with good things. Great things.
A dear friend sent me a verse from Jeremiah today. It is sweet. "Call to Me, and I will answer you, and I will tell you great and mighty things which you do not know." Jeremiah 33:3
I continue calling. I am trying to listen. I am waiting for the great and mighty things which I do not know.
I insisted that Ellie and Rachel accompany me to my chemo treatment this afternoon. Neither one of the girls was very happy with me. Rachel had been to the clinic one other time when I went to get my neulasta injection. I was hopeful that they would be able to meet Jerry, even though I did not have an appointment with him. Jerry is gone all week on vacation, so that didn't work out.
It is important to me that my daughters are aware of at least some of the day to day aspects of my cancer treatment. If they never see the clinic, or the "infusion" room, I fear their imaginations may be worse than the reality. Perhaps, in their minds, the imaginations were safer. But I wanted them to know that the reality is o.k., too. That the weekly treatments are not awful physically. That the people who care for me there are nice, gentle, and concerned. I don't want my daughters overcome with fear when they think of breast cancer. That is why I had Rachel and Ellie feel my tumor/lump before surgery. That is why I have shown them my scars. Ellie asked me a few weeks ago if my breast will always be so flat. "Don't know...just have to wait and see!" I want my journey to be an open and transparent one for them.
I had Ellie come in with me to the lab and to the"vitals" area today. She got to see the one-inch needle put into the port. She was able to see the "model" port, and have a visual of what is inside my chest. She knew what it felt like under my skin, but now she knows what it actually looks like. She knows what really happens when my blood is drawn out of the port. She knows that I walk back to the waiting room with tubes hanging out of my sweater. She knows that there is a lot of waiting involved!
Don and the girls and I then headed upstairs to the infusion room. It was a ZOO! Lots of cranky little kids there with their parent or grandparent. Weird. More patients than normal. No normal patients (as in the regulars...) There were only three nurses working instead of the usual five, so it was crazy. Luckily, I got my treatment started fairly quickly.
My nurse described Jerry to the girls as "kind of a nutty professor. Very very smart. Looks like Jerry Garcia, or Osama Bin Laden". Great descriptions! Made us laugh. Ellie and Rachel stayed just until the i.v. fluids were started, then we let them leave to go home.
At one point, while we were waiting, Ellie asked me if there has been cancer in my family. "No, not before me". "Did your Mom have any cancer?" "No." "Could I get breast cancer because you have it?" "Yes, it can be inherited, but you'll have early and regular check-ups when you become a grown woman." "I don't want cancer...."
I wonder to myself, again, what God's purpose is in my babies having to confront cancer at 13, at 18, at 22. How can there be good out of this? They're too young. They're too sweet. They're too precious. Oh, how I want to protect their hearts. But I cannot. And that makes me sad. And, some days, that makes me mad.
The fact that I question the purpose does not negate that there is a purpose. I do believe. Actually, I KNOW there is a purpose.
And I generally know what it is.
That, through this, God will be glorified. But I want the details....I want that scroll that says "Drenda, by going through this, your family will be __________. " And I want the blanks all filled in with good things. Great things.
A dear friend sent me a verse from Jeremiah today. It is sweet. "Call to Me, and I will answer you, and I will tell you great and mighty things which you do not know." Jeremiah 33:3
I continue calling. I am trying to listen. I am waiting for the great and mighty things which I do not know.
Thursday, March 19, 2009
Thursday Regulars
Today was another chemo treatment, preceded by a visit with Jerry. Unfortunately, he was not quite himself today.
No awe of me.
No compliments.
I was expecting something, needing something, really. But, alas, just a normal dr./patient exchange. I asked him about a few issues I am having and then asked "would these be caused by the taxol?" He responded "probably. Yes. I think the taxol." Did not do much to inspire my confidence, I must say. Then, when I went upstairs for the infusions, I had to wait quite awhile because Jerry had not sent up the drug orders. Odd.
Some good news, though. First is that, according to Jerry, the doctors like to give at least three weeks between the end of chemo and the beginning of radiation. That will mean a later finish date, but a break will be good. Also, when I asked him about the port in my chest and how long it will have to stay, Jerry said the port can come out as soon as chemo is done. WOO HOO!
But let me tell you about the waiting room. The Thursday regulars were there. Eleanor came in with her son. She is an old(er) lady who wears a bright blue turban...every week. I would guess she is in her late 70s (sorry, Eleanor. If you are by some remote chance reading this, I apologize if I am way off on your age. So hard to tell, isn't it?) Silky man was there, too. I can't quite figure out if he is a patient or if he comes with someone else. He is "silky man" because he is obviously wearing a wig, but it is most definitely a woman's wig/hairstyle. And it is very silky. The bangs a are a bit short, though. I am tempted to bring my wigs for him.
In the infusion room, there is a very sweet old lady getting her treatment with her adult son at her side. Seems the classic. Her son may be the one who never leaves home and can't keep a job. But he is there supporting his Momma.
I had "dancing legs" today. The benadryl made me very antsy. Couldn't keep my legs still. I asked the nurse about feeling so edgy, and she explained it was probably the benadryl. I had assumed it was caused by the steroids, but apparently not. She said that next time they'll cut down on the benadryl and see if that helps. Antsy is not good when you have a 1 inch needle in your chest.
To pass the time, I made it through Metro's 20 - 50 year population and employment growth prediction summary, AND Congressman Schrader's federal stimulus package summary. Great reading. End result of both: lots of people coming, not so many jobs coming, and the U.S. Government bleeding dollar bills.
Time to leave treatment...3 1/2 hours start to finish. As we left, Eleanor and her son were playing a rousing game of cards.
Jerry still not on track. My orders for the next treatment(s) had not been entered into the computer, which meant I could not get the appointment for next week scheduled. Perhaps scheduling can be done tomorrow.
So the whole afternoon leaves me wondering what the "regulars" think of me.
Do they think it odd that I am the only patient in the room without a wig or a hat? (I do. Think it is odd that, in a cancer/chemo clinic, no one is comfortable being bald. Where else should it be more normal?)
How do they describe me in their blog? Perhaps they don't even know I am there...it has taken me a number of weeks to recognize the "regulars".
Weeks to come out of my miserable world and notice others. Weeks to process the routine and almost get comfortable with it. Weeks to know which nurse is the one to I want to be assigned to. Weeks of counting. Weeks of crying. Weeks of dread. But now, weeks of hope. Because my God is a God who offers hope for the hopeless.
4 of 12 treatments done. 8 to go.
Hope
Strength
Courage
Because He commands it. And He provides it.
No awe of me.
No compliments.
I was expecting something, needing something, really. But, alas, just a normal dr./patient exchange. I asked him about a few issues I am having and then asked "would these be caused by the taxol?" He responded "probably. Yes. I think the taxol." Did not do much to inspire my confidence, I must say. Then, when I went upstairs for the infusions, I had to wait quite awhile because Jerry had not sent up the drug orders. Odd.
Some good news, though. First is that, according to Jerry, the doctors like to give at least three weeks between the end of chemo and the beginning of radiation. That will mean a later finish date, but a break will be good. Also, when I asked him about the port in my chest and how long it will have to stay, Jerry said the port can come out as soon as chemo is done. WOO HOO!
But let me tell you about the waiting room. The Thursday regulars were there. Eleanor came in with her son. She is an old(er) lady who wears a bright blue turban...every week. I would guess she is in her late 70s (sorry, Eleanor. If you are by some remote chance reading this, I apologize if I am way off on your age. So hard to tell, isn't it?) Silky man was there, too. I can't quite figure out if he is a patient or if he comes with someone else. He is "silky man" because he is obviously wearing a wig, but it is most definitely a woman's wig/hairstyle. And it is very silky. The bangs a are a bit short, though. I am tempted to bring my wigs for him.
In the infusion room, there is a very sweet old lady getting her treatment with her adult son at her side. Seems the classic. Her son may be the one who never leaves home and can't keep a job. But he is there supporting his Momma.
I had "dancing legs" today. The benadryl made me very antsy. Couldn't keep my legs still. I asked the nurse about feeling so edgy, and she explained it was probably the benadryl. I had assumed it was caused by the steroids, but apparently not. She said that next time they'll cut down on the benadryl and see if that helps. Antsy is not good when you have a 1 inch needle in your chest.
To pass the time, I made it through Metro's 20 - 50 year population and employment growth prediction summary, AND Congressman Schrader's federal stimulus package summary. Great reading. End result of both: lots of people coming, not so many jobs coming, and the U.S. Government bleeding dollar bills.
Time to leave treatment...3 1/2 hours start to finish. As we left, Eleanor and her son were playing a rousing game of cards.
Jerry still not on track. My orders for the next treatment(s) had not been entered into the computer, which meant I could not get the appointment for next week scheduled. Perhaps scheduling can be done tomorrow.
So the whole afternoon leaves me wondering what the "regulars" think of me.
Do they think it odd that I am the only patient in the room without a wig or a hat? (I do. Think it is odd that, in a cancer/chemo clinic, no one is comfortable being bald. Where else should it be more normal?)
How do they describe me in their blog? Perhaps they don't even know I am there...it has taken me a number of weeks to recognize the "regulars".
Weeks to come out of my miserable world and notice others. Weeks to process the routine and almost get comfortable with it. Weeks to know which nurse is the one to I want to be assigned to. Weeks of counting. Weeks of crying. Weeks of dread. But now, weeks of hope. Because my God is a God who offers hope for the hopeless.
4 of 12 treatments done. 8 to go.
Hope
Strength
Courage
Because He commands it. And He provides it.
Thursday, March 5, 2009
ilities. where do they come from?
I heard an ad on the radio yesterday that really made me stop and think. The ad was for a college that was advocating it was "the" place to get ility. Yes, ility. As in capability, ability, flexibility, responsibility etc. As I listened, I thought "where did I get my ilities?" The answer was immediate and resounding: My parents.
I have a large "family of origin" -- eight siblings. My parents had babies over 18 years. Really, two families in some senses. I am child number seven, but there are almost six years in between me and the next oldest. Children number eight & nine followed me rather closely. My Dad told me once that I was an accident, Becky was to keep me company, and Janette was "oh well, what the hell!"
We didn't have a lot of "things" growing up, but we did have family, and we did have love. There were no entitlements at our house - we worked. Ok, I have realized as I have gotten older that the pay for summer berry picking may have been subsidized depending on our age, but work was still expected. We each had to earn enough to purchase our school clothes for the coming year. How's that for learning how to budget?!
Mom was home always. Always. Dad working the land, and always other jobs, too, providing for his family. Dinners together every night. I remember my childhood as happy. Good. Not perfect, of course, but safe. Stable. Carefree.
Traditions. Sunday dinner after church. Popcorn and top-of-the-stove cookies Sunday night. Christmas Eve cookie deliveries to the neighbors while Santa came to our house. Having to wait for Mom to come to the car on Easter Sunday...that was the one Sunday she was always late getting ready. Coming home from church to find Easter baskets hidden through-out the house.
Mom and Dad provided a firm foundation. A foundation that gave us stability and the freedom to explore. From that foundation, we each have been able to grow. My parents raised nine children into caring, creative, capable, and contributing adults.
I am hopeful that I can honor my parents by striving to continue their tradition. The tradition of providing a firm foundation for my children that will allow and spur them to continue their growth into caring, creative, capable, and contributing adults.
I am filled with thankfulness to my parents for all that they gave to me. I realize the gift of that strong foundation did not come without great personal sacrifice and cost to them.
But I am even more thankful for them. As people. Not just what they did, but for who they are.
I miss my Mom. Tremendously. I love my Dad. Tremendously.
I have a large "family of origin" -- eight siblings. My parents had babies over 18 years. Really, two families in some senses. I am child number seven, but there are almost six years in between me and the next oldest. Children number eight & nine followed me rather closely. My Dad told me once that I was an accident, Becky was to keep me company, and Janette was "oh well, what the hell!"
We didn't have a lot of "things" growing up, but we did have family, and we did have love. There were no entitlements at our house - we worked. Ok, I have realized as I have gotten older that the pay for summer berry picking may have been subsidized depending on our age, but work was still expected. We each had to earn enough to purchase our school clothes for the coming year. How's that for learning how to budget?!
Mom was home always. Always. Dad working the land, and always other jobs, too, providing for his family. Dinners together every night. I remember my childhood as happy. Good. Not perfect, of course, but safe. Stable. Carefree.
Traditions. Sunday dinner after church. Popcorn and top-of-the-stove cookies Sunday night. Christmas Eve cookie deliveries to the neighbors while Santa came to our house. Having to wait for Mom to come to the car on Easter Sunday...that was the one Sunday she was always late getting ready. Coming home from church to find Easter baskets hidden through-out the house.
Mom and Dad provided a firm foundation. A foundation that gave us stability and the freedom to explore. From that foundation, we each have been able to grow. My parents raised nine children into caring, creative, capable, and contributing adults.
I am hopeful that I can honor my parents by striving to continue their tradition. The tradition of providing a firm foundation for my children that will allow and spur them to continue their growth into caring, creative, capable, and contributing adults.
I am filled with thankfulness to my parents for all that they gave to me. I realize the gift of that strong foundation did not come without great personal sacrifice and cost to them.
But I am even more thankful for them. As people. Not just what they did, but for who they are.
I miss my Mom. Tremendously. I love my Dad. Tremendously.
Wednesday, March 4, 2009
Perfect and Fat: That's Me!
A note I must write.
During my time today with Dr. Segal, (or Jerry, as he is now known to me), he was quite in awe of me.
Awe.
Of me.
Because, it seems, I am "the perfect patient".
You may now be shaking your head and asking "why is that?" My reaction, too! And, why am I the perfect patient? Because I "am well educated" and "ask questions about things" that he, Jerry, forgets to tell me.
Now, lest my pride swell at the wonderful label of "perfect", Don did point out that Jerry also called me fat. Well, not a quote exactly. In response to my question about one of the long term side effects of chemo causing loss in bone density, Jerry's response was "well, for someone like you who is a, hmmm, bit overweight (picture here a small nervous smile from him)...." and then "bigger women tend to have better bones than smaller women"....That is a positive, right?
Despite what it may appear to you, the reader, I do not usually keep a tally of compliments. However, the ones that have come my way during cancer treatment are too precious to let go. Let's see -- I use big words ("cumulative"), I have "amazing bone marrow", I am "so impressive" (because I continued to work through the four nasty, vile, A&C chemo treatments), and now, drum roll please,...I am "THE PERFECT PATIENT"!
But, I also lead the research nurse for the clinical trial to believe that Jerry is "in collusion" with me (because I had planned to refuse the trial if I didn't get into the part I wanted), and I am, "hmmm, a bit overweight". Ok. I am fat.
But I get good bones!
During my time today with Dr. Segal, (or Jerry, as he is now known to me), he was quite in awe of me.
Awe.
Of me.
Because, it seems, I am "the perfect patient".
You may now be shaking your head and asking "why is that?" My reaction, too! And, why am I the perfect patient? Because I "am well educated" and "ask questions about things" that he, Jerry, forgets to tell me.
Now, lest my pride swell at the wonderful label of "perfect", Don did point out that Jerry also called me fat. Well, not a quote exactly. In response to my question about one of the long term side effects of chemo causing loss in bone density, Jerry's response was "well, for someone like you who is a, hmmm, bit overweight (picture here a small nervous smile from him)...." and then "bigger women tend to have better bones than smaller women"....That is a positive, right?
Despite what it may appear to you, the reader, I do not usually keep a tally of compliments. However, the ones that have come my way during cancer treatment are too precious to let go. Let's see -- I use big words ("cumulative"), I have "amazing bone marrow", I am "so impressive" (because I continued to work through the four nasty, vile, A&C chemo treatments), and now, drum roll please,...I am "THE PERFECT PATIENT"!
But, I also lead the research nurse for the clinical trial to believe that Jerry is "in collusion" with me (because I had planned to refuse the trial if I didn't get into the part I wanted), and I am, "hmmm, a bit overweight". Ok. I am fat.
But I get good bones!
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