After a weekend of trying to "calm down!" my lower GI system a bit (thank you corticosteroids), and then just having a good cleansing cry last night with Scott after watching "The Midwives", I am better today.
(It was just a sad show, and opened the door for what "Dr. Scott" said I had been needing to do for a while...)
Last week was ugly, but unlike the previous two treatments, this time going into days 7 - 14 after the first seven days of reeling from the chemo - I have so far - Praise God, give a shout - avoided germs and infection - making this, *day 11* a good day relatively speaking.
God bless Scott for lathering on the hand sanitizer coming home from work each day.
I am still tiptoeing, but I can finally, slowly climb a flight of stairs today and not have to lay down for thirteen minutes, so it appears my red blood cells are still making an effort even after all the hurtful things I said about them last week.
Mostly, I think God Most High has heard my cry, heard the prayers of friends, and I thank you. I don't like to post weak things like the last post, but on the other hand, that is cancer and more than anything I hate pretense. So, sometimes, you get it all. But I appreciate the notes and encouragement - it meant a lot. I have never felt that weak - that close to not being able to get out of bed. That close to pushing my heart too hard just by going up a flight of stairs. That close to being cell-energy-negative.
The cacophony of drugs and drug reactions and feeling raw and weak and sick and low blood cells makes for a perfect storm of depression. I never realized this deeply how closely tied the bone marrow and cells recovery and weakness and emotional all tie together.
Thank you for praying for my low-reactive-bone-marrow as well.
You all rock. Thank you for caring and prayers. God is good. He is good in the bad, and He is good in the better. But today I am giving ear to being open to feeling better, open to feeling God work.
***
God has so blessed me. Even though I am walking a journey many think horrid - including my body this past week - I find others walking something much worse. That, in some strange way, always strengthens me. There are those that are much braver, facing much worse circumstances, and they are going on. They are continuing to walk their journey.
Last week on Thursday when I finally worked up the finger strength to start scrolling through my phone I happened upon documentaries on the drug cartels in Mexico. Right across our border is a world that none of us would ever intentionally enter and ever desire for our growing children. There are few choices in Mexico - your kids grow up and go into the drug cartel, or they try to escape - but either way they have a good chance of not seeing their 30th birthdays.
I would not want to be a mother in that horrible situation and was so thankful for our choice our children have here in this land that I live. You can argue poverty, etc, I know all that, but we are not governed by terror and fear and kidnappings and murders daily in our midst. If my husband goes out the door to work, I don't have to worry that he might be one of the those kidnapped and abused until someone can send a ransom or find him.
It's a different world.
I read a documentary on the rape houses that are being used in the middle east to subdue and humiliate a population. It is horror to the extreme, and yet these people are facing this daily.
There is much worse out there.
I'm not minimizing what I am going through, but it strengthens me somehow to know that there are others facing much worse, and they are still fighting somehow. Still struggling and journeying. Evil can stand in the path in many different forms - many different measures.
Much to pray over.
***
Chloe stayed with me Monday evening while her daddy and Popop and sister went to Home Depot. She was quite a good little nurse. She would come into my bedroom and lean on my bed and smile and ask me if I needed anything. Then she told me she was going to clean the baby room, and seeing as you can barely walk through it right now mostly because there was a "grand" playtime in there recently by her and her sister, it seemed like a good idea to her and to me. She proceeded to line the books all up on one shelf from biggest to smallest.
She came back to my room to give me updates. She found the book we had been searching for - Dumbo! She brought it in and practically read it to me. She patted my arm and told me that she loved me. I told her she was the sweetest girl I knew at that moment and she smiled.
She kept talking to me, saying things to make me "feel better". We talked about the Lodi Library days, and going to McDonald's afterwards. We talked about all the times I rocked her when she was a baby. We talked about all the times I rocked Millie when she was a baby.
She didn't say anything for a bit, then smiled at me again and said "Grandmum, I love you". Then she added "you have nice teeth".
I'm not sure why, I'm not sure if it was all she could come up with at the moment with my current circumstances - I mean there's not a lot to choose from - she can't say "nice hair", "nice makeup", "nice hat", but she smiled and patted my arm again.
Then she finished up the books, and stepped over everything else in the room to proudly proclaim her accomplishment of "cleaning the baby-room books".
I'm a little like Chloe today. I'm looking over everything that should be ordered in my life and picked up and made to look better, but, hey, the book shelf looks darned good and I'm pretty glad to just be up and about.
If my teeth are my best feature some days, heaven help me, but that's kind of how it is today - you just pick what you can and go with it. And smile then.
Monday, October 29, 2012
Friday, October 26, 2012
weakness and deserts
I have nothing.
There is nothing to write about except the depths of despair. I woke up Monday morning to nothing but quiet, dead quiet. I could hear the people on our street driving to work, I could hear someone walking a dog, but I was aware it took a good amount of energy just to pull my blankets back from my face.
On my bedside are bottles of drugs, bottles of water that I cannot open now without a pair of pliers, a pack of cinnamon gum because I cannot stand the taste of anything else, and my phone.
The clock means nothing to me now.
In my mind Monday morning, I had stepped off another cliff and was just falling, falling not knowing where I might land in a few days time. My blood counts are low, and I feel my body ebbing and weak and not wanting to eat doesn't help to replenish them much.
I used to think there was a bit of spunk in me, no matter what may come, but after some thorough investigation, I can find none of that in any corner of my being this past week.
We showed up bright and early Friday morning for my treatment, and I told my nurse that even though I was smiling and seemed just fine, my body had been *revulsing* a whole day before. She said it's normal and has a name "anticipatory-nausea". It means your body is reading the signs that it's going to be poisoned again, and sends up all kinds of flairs and warnings - aka, nausea and gagging - trying to get you to do something else, anything else rather than do that again.
My body is reacting like a two year old - wanting to warn me of obvious danger but with no idea on causes or effects or how to avoid it. It holds my hand and pleads with me to go somewhere with it away from all this - anywhere - just walk away.
It didn't quite work that way.
***
I switched back to steroids for three days after this chemo round and it did seem to help some. At least I didn't lose three whole days to mindless nothing. Instead, I got the pleasure of mindless *being*.
They tell me the side effects of chemo are of course "cumulative", as they continue to say treatment after treatment, and the accumulation is almost doing me in.
In a word - I am depressed. And weak to the point of not doing anything. Anything.
For this week. And probably next. Then I feel better for a few days, then the "anticipatory-nausea" starts up again; then I will go back to the center-of-disease-saving-souls, get my arm banded, lay out in a bed with a port attached to an IV and a few brightly colored drugs for what will hopefully be my last treatment ever.
I pray it so.
I so shouldn't talk to people or write when I am depressed. In fact, I can't talk without crying these last few days. I feel so weak, my fingers barely press hard enough on the keys at times.
That is so not me, but there is no arguing with a body that cannot cope.
So, I lay in bed and wonder, where does one go that claims to be a child of God in such circumstances? I would much rather have the garden path of life strewn with freshly raked stones and blooming flowers and crisp linens on the lawn furniture.
Where does one's soul go when it is all battered up?
I go back to where it is I know He has led me and meets me time and time again - the desert.
The desert is where He started me, the desert is where I am now.
If I had one wish, it is that all who want to understand pain in life would listen to this one message - it has hollowed the ground I have walked many times. It's the message that God took His children to the Promised Land that is 70% desert.
The message I started with back in December is the same one I listened to the other night. We are too blessed here in America to understand maybe that most of life is not easy. We think it should be, we think it's our right, but step outside our safe borders and you learn a different truth - life is at best difficult at times, and how you travel that difficulty is of supreme importance.
The pictures of a Shepherd leading me in a desolate desert - guiding me to my daily food - guiding my footfalls so I do not stumble into the pit of no return - guiding me on life's most difficult travels. That is the picture He leaves me with this week.
It's not your grazing field of sweet clover - it's ugly and hard. When moving one hand to get a drink uses up your cell reserves for an hour, we are not camping out in sweet clover here folks.
As Ray says in this message, sometimes there is the gravelly stone that drives you nuts on the road and you feel your feet get bruised and injured from walking it; sometimes it's the bigger stones that are treacherous and loose and could be your undoing if you do not move carefully over them.
And sometimes, you come to a big fallen boulder in the road, and it appears there is no way around it.
In that desert you are totally reliant on your shepherd. It's hard, it's hot, it's beset with dangers and serpents - but that is where you meet God on the most intimate terms. It's where you learn to rely on Him in the most intimate ways. Each bite. Each drink. Each step.
I urge you to download this message and listen to it when you walk or jog or drive or have time to hear it. (sorry, no pictures folks) Then listen again. It's a message we don't hear all that often, and yet the Bible - from what I read of it anyways - is completely full of it.
Travelling that desert is not a lack of faith, not a lack of hope, not a lack of believing God can do miraculous things - all that is true and more. But if you want to walk with God and if you want to not let your soul get surly and angry and stay in the depths of the pit of despair - it's a matter of learning the hardest things and believing you just found gold when all is desolate around you.
http://followtherabbi.com/uploads/assets/audio/discipleship3_908.mp3
There is nothing to write about except the depths of despair. I woke up Monday morning to nothing but quiet, dead quiet. I could hear the people on our street driving to work, I could hear someone walking a dog, but I was aware it took a good amount of energy just to pull my blankets back from my face.
On my bedside are bottles of drugs, bottles of water that I cannot open now without a pair of pliers, a pack of cinnamon gum because I cannot stand the taste of anything else, and my phone.
The clock means nothing to me now.
In my mind Monday morning, I had stepped off another cliff and was just falling, falling not knowing where I might land in a few days time. My blood counts are low, and I feel my body ebbing and weak and not wanting to eat doesn't help to replenish them much.
I used to think there was a bit of spunk in me, no matter what may come, but after some thorough investigation, I can find none of that in any corner of my being this past week.
We showed up bright and early Friday morning for my treatment, and I told my nurse that even though I was smiling and seemed just fine, my body had been *revulsing* a whole day before. She said it's normal and has a name "anticipatory-nausea". It means your body is reading the signs that it's going to be poisoned again, and sends up all kinds of flairs and warnings - aka, nausea and gagging - trying to get you to do something else, anything else rather than do that again.
My body is reacting like a two year old - wanting to warn me of obvious danger but with no idea on causes or effects or how to avoid it. It holds my hand and pleads with me to go somewhere with it away from all this - anywhere - just walk away.
It didn't quite work that way.
***
I switched back to steroids for three days after this chemo round and it did seem to help some. At least I didn't lose three whole days to mindless nothing. Instead, I got the pleasure of mindless *being*.
They tell me the side effects of chemo are of course "cumulative", as they continue to say treatment after treatment, and the accumulation is almost doing me in.
In a word - I am depressed. And weak to the point of not doing anything. Anything.
For this week. And probably next. Then I feel better for a few days, then the "anticipatory-nausea" starts up again; then I will go back to the center-of-disease-saving-souls, get my arm banded, lay out in a bed with a port attached to an IV and a few brightly colored drugs for what will hopefully be my last treatment ever.
I pray it so.
I so shouldn't talk to people or write when I am depressed. In fact, I can't talk without crying these last few days. I feel so weak, my fingers barely press hard enough on the keys at times.
That is so not me, but there is no arguing with a body that cannot cope.
So, I lay in bed and wonder, where does one go that claims to be a child of God in such circumstances? I would much rather have the garden path of life strewn with freshly raked stones and blooming flowers and crisp linens on the lawn furniture.
Where does one's soul go when it is all battered up?
I go back to where it is I know He has led me and meets me time and time again - the desert.
The desert is where He started me, the desert is where I am now.
If I had one wish, it is that all who want to understand pain in life would listen to this one message - it has hollowed the ground I have walked many times. It's the message that God took His children to the Promised Land that is 70% desert.
The message I started with back in December is the same one I listened to the other night. We are too blessed here in America to understand maybe that most of life is not easy. We think it should be, we think it's our right, but step outside our safe borders and you learn a different truth - life is at best difficult at times, and how you travel that difficulty is of supreme importance.
The pictures of a Shepherd leading me in a desolate desert - guiding me to my daily food - guiding my footfalls so I do not stumble into the pit of no return - guiding me on life's most difficult travels. That is the picture He leaves me with this week.
It's not your grazing field of sweet clover - it's ugly and hard. When moving one hand to get a drink uses up your cell reserves for an hour, we are not camping out in sweet clover here folks.
As Ray says in this message, sometimes there is the gravelly stone that drives you nuts on the road and you feel your feet get bruised and injured from walking it; sometimes it's the bigger stones that are treacherous and loose and could be your undoing if you do not move carefully over them.
And sometimes, you come to a big fallen boulder in the road, and it appears there is no way around it.
In that desert you are totally reliant on your shepherd. It's hard, it's hot, it's beset with dangers and serpents - but that is where you meet God on the most intimate terms. It's where you learn to rely on Him in the most intimate ways. Each bite. Each drink. Each step.
I urge you to download this message and listen to it when you walk or jog or drive or have time to hear it. (sorry, no pictures folks) Then listen again. It's a message we don't hear all that often, and yet the Bible - from what I read of it anyways - is completely full of it.
Travelling that desert is not a lack of faith, not a lack of hope, not a lack of believing God can do miraculous things - all that is true and more. But if you want to walk with God and if you want to not let your soul get surly and angry and stay in the depths of the pit of despair - it's a matter of learning the hardest things and believing you just found gold when all is desolate around you.
http://followtherabbi.com/uploads/assets/audio/discipleship3_908.mp3
Sunday, October 7, 2012
Beware, the sideways nurse's glance......
I remember when I started this round of chemo that I thought it would be hard, but it had to be easier than last time. I thought it would lay me out a bit, because by nature that's what chemo loves to do to a person, but I was getting the Neulasta injection, so I should be fine.
I told all that to my chemo nurse going over the information preparing me for my next battle: AC. Those letters mean all kinds of things, but if you are in breast cancer treatment they mean dastardly things are going to happen to your body cell makeup.
When I told my nurse that I didn't think this go-around would be as severe, she was holding the notebook pointing at a fact with her finger and she paused and looked sideways. That sometimes means you are trying to create something to say. She paused a moment and said "we like the ones that have had chemo before starting this AC. They have a really good feel for what they are in for".
I thought she was being a bit dramatic. I have a friend who worked clear through her AC. I have read a couple of women that made it through ok. There are lots of things to read saying how bad it is, but I chose to believe that this one could not be as bad as the last one, ergo, I might have one bad week, but that still leaves two good weeks.
Ergo, my wimpy blood cells say otherwise - I'm in this over four weeks now, and I can maybe count four good days on four wavering fingers. Maybe. That includes the day I laid on the couch all day with a vibrating heating pad on my back to help with the bone pain.....
They gave me my chemo even though my blood work was quite low Friday week ago, and after the initial pre-drug "feel good" has worn off, this is the first time my head has been above water enough to even want to sit down in front of a computer.
The pre-treatment high dose steroids from the chemo carried me through till Monday morning, and after that crash I have no memory of the rest of Monday or Tuesday. I remember Scott dropping me off to braid the twins hair for school early Monday morning, and that my fingers would not work right, then I insisted I was "fine", walked home, got into bed, and as the song says, the lights went out in Georgia folks......
Tuesday Scott called home, I was sick, couldn't find my drugs, he didn't like the way I sounded, so he headed straight home. It wasn't pretty, he says.
Wednesday seemed a little better. But I started a dry cough. Thursday I had more dry cough. Friday, I was laid out sick. It felt like someone had taken a baby bottle brush to all of my bronchial tubes and that my esophagus was in shreds. Each time I coughed felt like I was moving that brush up and down, up and down.
I had been using my "magic mouth wash" hoping it would turn this to the better, but started putting calls into my doctors office Friday afternoon - *before 5pm this time* - and they told me they would send me a strong antibiotic (I sounded pretty horrible on the phone - like I was a 15 pack a day smoker). The nurse came back on the phone and mentioned that I sounded "very bronchial" - I agreed. She said it sounded like my airways were swelling and was I having trouble breathing, and I said yes. She said to get in the car and get there.
Suddenly flashing before my eyes were the headlines of the Columbus Dispatch last Friday in the waiting room: "MRSA" and "OSU Researching" -- and I suddenly started the famous "karen*back*away"......
I said "I'm still breathing ok" - even though I had been kneeling over a pillow all afternoon trying to get airways open and vomiting up gunky gunk. I had also started crying, which seemed to help somewhat loosen up and get things coming out.
Enough gore, I know.
So, after being on hold, talking, being on hold, talking, they agreed to start me on high dose antibiotics at home, and if my fever tiptoed over normal or if my airways tightened an "nth" more after starting these, I was to come down immediately.
I love those ladies.
***
The thing with chemo is that it stops all of your body's ability to make new cells. So the fastest and most regenerating cells in your body get it the worst. That's why your hair falls out. That's why they are fastidious about mouth sores - your mouth is the fastest healing part of your body because it regenerates new cells faster there - unless of course you have chemo holding that door. Then you could go weeks without a new cell being brave enough to tentatively step in and take over the damages.
They don't want you vomiting because not only does that affect your weight and overall health, but those that don't vomit don't tear up their esophagus and stomach as much - both parts of your body that has a lot to lose when they cannot regenerate new cells to heal up the tears from vomiting and chemo ulcers and such. Your gastro track the whole way through is taking quite a beating from chemo, and the less you alarm it with doing even more damage - like vomiting and or bad, croaky coughs - the better.
My doctor is not going to like this one little bit when I see her next time.
***
So Saturday, I am better, but my body thinks that moving my big toe is one big exertion, so we know my blood cell counts are pretty much dwelling in the basement somewhere. When I woke up at noon, I told Scott that I felt like I had been through Gettysburg and Antietam all in one week - and I mean no disrespect to soldiers - but I felt a bit battle worn, a bit shell shocked. I couldn't even talk very much. Scott kept talking to me and I mostly just smiled - it was the least amount of exertion.
Later in the afternoon he wrapped me up with lots of pillows and warm clothes and took me for a drive. When we had been in the car for a while it finally hit me why this had been so important to him - it was exactly four years ago that I had done the same thing for him when he had got out of the hospital and was not doing so well. I had driven him all over lower Ashland County in our little Prizm so he could drink in the beauty of the leaves and smell the fall air and hopefully put some health back into his bones - that's what I told him I was doing - driving to put health back into his bones - so Saturday, he held my hand and told me the air and the beauty of the leaves and the crispness in the air and him driving me - that it would put health back into my bones.
And I could barely scare up enough energy to move my lips to smile, but I did.
It was beautiful. We even did a very slow, deliberate walk on the Pleasant Hill Dam. And for the record, that was my total exercise for the day.
I don't think my $4,000 Neulasta Injection is holding up to it's worth. Next time, I may ask for the amount in gold and probably come out even. If you've not been to the bottom of the low blood cell pile, you just feel like breathing is a bonus and a workout. It's maybe where the word lethargic comes from. And the only thing you can do, is rest, and rest, and rest, and finally the cells start to rebuild.
Scott found today that what really helps that is homemade chicken gravy over biscuits with a side of green beans. Easy on the whole body.
***
I've had some pretty crazy dreams all through this the past week. I remember when I was up last night Scott asked me if I thought it was awful cold with the fan in the window, and I told him no, that "they" wanted the house cold. He asked me who "they" were, and I told him to look in the shower. I told him there were four of "them".
I was pretty unconcerned, but Scott was suddenly greatly concerned.
Scott is not easily spooked, but he did go look in the shower, just to be on the safe side. When your wife is talking a little crazy, you want to make sure she isn't filling up the shower with more than just soap bubbles, maybe.
But with the house crazy cold, I was completely content with the four others in the house and snuggled down into my warm double-down blanketed bed, and dreamt. And dreamt vividly. It was the type of dream that is one thing, but you know that there is an undercurrent reason below it all, and I woke up crying inconsolably.
This past month, my sister had been visiting from Oregon for three weeks, caring for my mother. With my chemo, then not doing so well, etc, etc, I only got a half hour visit in before they left. And even then, didn't get to talk to her.
She was seventeen when I was born, and from what I understand, took over a good amount of my care and interaction as an infant and toddler.
When my younger brother was born two and a half years later, words were used towards me like "wild injun", "birds nest", "savage", as in "why she just looks like a little savage, that one" - you get the picture.
My father insisted that I had long hair, but I didn't like it brushed - it was curly and always, always full of tangles. My mother didn't have the time nor the energy most days to fight me on it. I remember my sister one day trying to coax me to brush my hair - she sat me down beside her on the bed and got one brush stroke in. I wanted to be obedient because I worshiped her so, but I also didn't want to get my hair torn apart, so I moved one hop over on the bed. She moved one hop over and said low and sweet, "well now, doesn't that look nice", just like sweet oil flowing over a rusty hinge. She brushed another stroke, and I hopped another hop, she hopped another hop and by the time we got around the other side of the bed I remember I had a very pretty pony tail in my hair. I knew it was pretty because she said so the last three hops.
As my sister left my life, I cried and cried and cried with grief. And there in her stead, was my grandmother. She would pick me up and rock me, and rock me, and hum some songs and rock me some more.
My dream this morning was all about sometimes you don't get the best in life, sometimes you get second best or the leftovers or whatever some kind souls give you - but when I woke up I was crying because I was telling someone in my dream that "sometimes second best, is the best", and I was inconsolable because I don't think I ever told my sister that.
Not that she was second best, but that she took the time to stand in the gap for a spunky yet shy yet left alone a lot wee one. It wasn't first choice for children, but sometimes the second choice is the best after all.
So Mary Ann, I tell you now, I am grateful for what you poured into a wee one's life when you were a working teenager yourself.
I don't know what souls were walking about in my cold house last night, but I do know that they awakened something deep inside me that I like to forget or pretend is not there, but chemo always shreds that curtain and it's there and open and I think on it a lot at times then.
And after Scott's "pensive" looking in the shower last night, he said I should probably put my little excursion into Kaballah on hold for a bit.
I don't know. But I do know that when I wake up and smell something from my past that was so good and sweet, or when I wake up and feel someone stroking my hair telling me how pretty it is when they had just survived an epic battle of brush and tangle - I feel it deeply and it deeply prompts me to give it forward.
I don't know what these little ones around us will ever remember. I do pray daily that they remember a warmth and gentleness and love and acceptance and the knowing that I will always, always grab their hand and ask them "how are you dear?" just as my grandmother did for me.
I remember sitting on an upstairs bed gazing out a window with Mary Ann and there were beautiful apple blossoms all over our apple tree. I was entranced, and she smiled. It's a short memory, but a good one. I want the wee ones around me to remember gazing at the stars and knowing they were loved. I want them to remember stirring in the kitchen standing on a chair and know they were loved. I want them to remember building roads and popping with ideas of adding a zoo or adding a skyscraper or adding a farm all beside that road, and know they were loved.
Sometimes the kind soul standing in the gap is all that is needed for a gap in time to fill another's soul. It was done for me, and I am filled with dreams of gratefulness for it all.
I told all that to my chemo nurse going over the information preparing me for my next battle: AC. Those letters mean all kinds of things, but if you are in breast cancer treatment they mean dastardly things are going to happen to your body cell makeup.
When I told my nurse that I didn't think this go-around would be as severe, she was holding the notebook pointing at a fact with her finger and she paused and looked sideways. That sometimes means you are trying to create something to say. She paused a moment and said "we like the ones that have had chemo before starting this AC. They have a really good feel for what they are in for".
I thought she was being a bit dramatic. I have a friend who worked clear through her AC. I have read a couple of women that made it through ok. There are lots of things to read saying how bad it is, but I chose to believe that this one could not be as bad as the last one, ergo, I might have one bad week, but that still leaves two good weeks.
Ergo, my wimpy blood cells say otherwise - I'm in this over four weeks now, and I can maybe count four good days on four wavering fingers. Maybe. That includes the day I laid on the couch all day with a vibrating heating pad on my back to help with the bone pain.....
They gave me my chemo even though my blood work was quite low Friday week ago, and after the initial pre-drug "feel good" has worn off, this is the first time my head has been above water enough to even want to sit down in front of a computer.
The pre-treatment high dose steroids from the chemo carried me through till Monday morning, and after that crash I have no memory of the rest of Monday or Tuesday. I remember Scott dropping me off to braid the twins hair for school early Monday morning, and that my fingers would not work right, then I insisted I was "fine", walked home, got into bed, and as the song says, the lights went out in Georgia folks......
Tuesday Scott called home, I was sick, couldn't find my drugs, he didn't like the way I sounded, so he headed straight home. It wasn't pretty, he says.
Wednesday seemed a little better. But I started a dry cough. Thursday I had more dry cough. Friday, I was laid out sick. It felt like someone had taken a baby bottle brush to all of my bronchial tubes and that my esophagus was in shreds. Each time I coughed felt like I was moving that brush up and down, up and down.
I had been using my "magic mouth wash" hoping it would turn this to the better, but started putting calls into my doctors office Friday afternoon - *before 5pm this time* - and they told me they would send me a strong antibiotic (I sounded pretty horrible on the phone - like I was a 15 pack a day smoker). The nurse came back on the phone and mentioned that I sounded "very bronchial" - I agreed. She said it sounded like my airways were swelling and was I having trouble breathing, and I said yes. She said to get in the car and get there.
Suddenly flashing before my eyes were the headlines of the Columbus Dispatch last Friday in the waiting room: "MRSA" and "OSU Researching" -- and I suddenly started the famous "karen*back*away"......
I said "I'm still breathing ok" - even though I had been kneeling over a pillow all afternoon trying to get airways open and vomiting up gunky gunk. I had also started crying, which seemed to help somewhat loosen up and get things coming out.
Enough gore, I know.
So, after being on hold, talking, being on hold, talking, they agreed to start me on high dose antibiotics at home, and if my fever tiptoed over normal or if my airways tightened an "nth" more after starting these, I was to come down immediately.
I love those ladies.
***
The thing with chemo is that it stops all of your body's ability to make new cells. So the fastest and most regenerating cells in your body get it the worst. That's why your hair falls out. That's why they are fastidious about mouth sores - your mouth is the fastest healing part of your body because it regenerates new cells faster there - unless of course you have chemo holding that door. Then you could go weeks without a new cell being brave enough to tentatively step in and take over the damages.
They don't want you vomiting because not only does that affect your weight and overall health, but those that don't vomit don't tear up their esophagus and stomach as much - both parts of your body that has a lot to lose when they cannot regenerate new cells to heal up the tears from vomiting and chemo ulcers and such. Your gastro track the whole way through is taking quite a beating from chemo, and the less you alarm it with doing even more damage - like vomiting and or bad, croaky coughs - the better.
My doctor is not going to like this one little bit when I see her next time.
***
So Saturday, I am better, but my body thinks that moving my big toe is one big exertion, so we know my blood cell counts are pretty much dwelling in the basement somewhere. When I woke up at noon, I told Scott that I felt like I had been through Gettysburg and Antietam all in one week - and I mean no disrespect to soldiers - but I felt a bit battle worn, a bit shell shocked. I couldn't even talk very much. Scott kept talking to me and I mostly just smiled - it was the least amount of exertion.
Later in the afternoon he wrapped me up with lots of pillows and warm clothes and took me for a drive. When we had been in the car for a while it finally hit me why this had been so important to him - it was exactly four years ago that I had done the same thing for him when he had got out of the hospital and was not doing so well. I had driven him all over lower Ashland County in our little Prizm so he could drink in the beauty of the leaves and smell the fall air and hopefully put some health back into his bones - that's what I told him I was doing - driving to put health back into his bones - so Saturday, he held my hand and told me the air and the beauty of the leaves and the crispness in the air and him driving me - that it would put health back into my bones.
And I could barely scare up enough energy to move my lips to smile, but I did.
It was beautiful. We even did a very slow, deliberate walk on the Pleasant Hill Dam. And for the record, that was my total exercise for the day.
I don't think my $4,000 Neulasta Injection is holding up to it's worth. Next time, I may ask for the amount in gold and probably come out even. If you've not been to the bottom of the low blood cell pile, you just feel like breathing is a bonus and a workout. It's maybe where the word lethargic comes from. And the only thing you can do, is rest, and rest, and rest, and finally the cells start to rebuild.
Scott found today that what really helps that is homemade chicken gravy over biscuits with a side of green beans. Easy on the whole body.
***
I've had some pretty crazy dreams all through this the past week. I remember when I was up last night Scott asked me if I thought it was awful cold with the fan in the window, and I told him no, that "they" wanted the house cold. He asked me who "they" were, and I told him to look in the shower. I told him there were four of "them".
I was pretty unconcerned, but Scott was suddenly greatly concerned.
Scott is not easily spooked, but he did go look in the shower, just to be on the safe side. When your wife is talking a little crazy, you want to make sure she isn't filling up the shower with more than just soap bubbles, maybe.
But with the house crazy cold, I was completely content with the four others in the house and snuggled down into my warm double-down blanketed bed, and dreamt. And dreamt vividly. It was the type of dream that is one thing, but you know that there is an undercurrent reason below it all, and I woke up crying inconsolably.
This past month, my sister had been visiting from Oregon for three weeks, caring for my mother. With my chemo, then not doing so well, etc, etc, I only got a half hour visit in before they left. And even then, didn't get to talk to her.
She was seventeen when I was born, and from what I understand, took over a good amount of my care and interaction as an infant and toddler.
When my younger brother was born two and a half years later, words were used towards me like "wild injun", "birds nest", "savage", as in "why she just looks like a little savage, that one" - you get the picture.
My father insisted that I had long hair, but I didn't like it brushed - it was curly and always, always full of tangles. My mother didn't have the time nor the energy most days to fight me on it. I remember my sister one day trying to coax me to brush my hair - she sat me down beside her on the bed and got one brush stroke in. I wanted to be obedient because I worshiped her so, but I also didn't want to get my hair torn apart, so I moved one hop over on the bed. She moved one hop over and said low and sweet, "well now, doesn't that look nice", just like sweet oil flowing over a rusty hinge. She brushed another stroke, and I hopped another hop, she hopped another hop and by the time we got around the other side of the bed I remember I had a very pretty pony tail in my hair. I knew it was pretty because she said so the last three hops.
As my sister left my life, I cried and cried and cried with grief. And there in her stead, was my grandmother. She would pick me up and rock me, and rock me, and hum some songs and rock me some more.
My dream this morning was all about sometimes you don't get the best in life, sometimes you get second best or the leftovers or whatever some kind souls give you - but when I woke up I was crying because I was telling someone in my dream that "sometimes second best, is the best", and I was inconsolable because I don't think I ever told my sister that.
Not that she was second best, but that she took the time to stand in the gap for a spunky yet shy yet left alone a lot wee one. It wasn't first choice for children, but sometimes the second choice is the best after all.
So Mary Ann, I tell you now, I am grateful for what you poured into a wee one's life when you were a working teenager yourself.
I don't know what souls were walking about in my cold house last night, but I do know that they awakened something deep inside me that I like to forget or pretend is not there, but chemo always shreds that curtain and it's there and open and I think on it a lot at times then.
And after Scott's "pensive" looking in the shower last night, he said I should probably put my little excursion into Kaballah on hold for a bit.
I don't know. But I do know that when I wake up and smell something from my past that was so good and sweet, or when I wake up and feel someone stroking my hair telling me how pretty it is when they had just survived an epic battle of brush and tangle - I feel it deeply and it deeply prompts me to give it forward.
I don't know what these little ones around us will ever remember. I do pray daily that they remember a warmth and gentleness and love and acceptance and the knowing that I will always, always grab their hand and ask them "how are you dear?" just as my grandmother did for me.
I remember sitting on an upstairs bed gazing out a window with Mary Ann and there were beautiful apple blossoms all over our apple tree. I was entranced, and she smiled. It's a short memory, but a good one. I want the wee ones around me to remember gazing at the stars and knowing they were loved. I want them to remember stirring in the kitchen standing on a chair and know they were loved. I want them to remember building roads and popping with ideas of adding a zoo or adding a skyscraper or adding a farm all beside that road, and know they were loved.
Sometimes the kind soul standing in the gap is all that is needed for a gap in time to fill another's soul. It was done for me, and I am filled with dreams of gratefulness for it all.
Thursday, September 27, 2012
counting days
Day 13 out from chemo I began to wonder, then think "maybe I won't lose my hair this time around".
Day 14, just like clockwork, it started to come out. So then I thought, "maybe my scalp won't hurt so much this time around".
Day 17, it started to hurt. My son offered his clippers for my personal use again. I turned him down, saying "maybe it won't fall out so fast this time".
Day 20, there is hair all over my shirt today. Hair all over my pillows. Hair all over the house. Scott came home from work on Monday, and I asked him "remember when I used to growl at my errant curls in my hair?" then I said "watch what I can do now", and I pulled out the most cantankerous curl..... just pulled it out. We laughed, he hugged me, then I cried a little.
I jumped into this chemo thinking it would be a little easier. It has been in some ways, but you don't escape anything, trust me.
I do have to say - even though I hate to put it down on paper as it seems everything I hope for gets dashed rather quickly - but I do have to say that it is nice to have some recovery days in between treatments.
Very nice.
This chemo has hit me depression-wise as well as it's other little gifts it bestowed. I think part of it is the drugs, but some of it is downright body revulsion - every time I think of going back Friday, I get literally nauseous. Like when you have the flu and get sick on a certain food and cannot bear to look at it again type revulsion-nausea.
Scott is very helpful - he tells me that after Friday, I will be halfway done. After doing six months of chemo weekly the first part of this year, three months of chemo spaced three weeks apart is a step down, but still not something I want to be doing.
And the revulsion has surprised me - that didn't happen last time.
So even though they pump you full of anti-nausea drugs, your body still screams "NO!!"
Plus, I am again protecting white blood cells. My white blood cell count was only .2 above low-normal when I started chemo again, so even with the Neulasta injection, I seem to be fighting off more than I want. And apparently, after my mouth infection and chemo sores, I am my own worst enemy.
Sigh.
Even though it has been a full-on clothesline type tackle stepping back into this, I have decided that I need to count my blessings. Or said another way, remember what is important. Or, as I tell Scott sometimes "just tell me ten good things".
1. Watching our oldest grandchild at her 6th birthday party - I know I will not always be invited to her parties with her friends - so I was not going to miss this for the world. She is amazing. She was diagnosed with a problem preventing her from playing contact sports - which in her life meant soccer - which she loved dearly. So at her party, she wanted to "play soccer!" which you have to say with a menacing-sports-face and great fire in your belly. She was pretty awesome leading the pack of "bees" all around the field - I want that heart-picture to stay with me always. She has a dear heart and is so conscious about others feelings, yet leads the way with her arms in the air yelling like a banshee - everyone loves her. Especially her Popop and Grandmum.
2. We have amazing friends throughout all of this. It has been a long year for me, and I am totally tired of this so I can imagine that they must get the same "battle-weariness". But they keep helping and sending cards, emails, talking and making me stay involved in the world when I would rather just not.
3. I can't say enough about our kids and their help through all of this. I have an out-venting kitchen fan because Scotty and Wes took time to install it. I don't have to smell meat cooking anymore. Or smell anything in the kitchen anymore. It's awesome.
Scotty keeps sending down food - I think he is concerned we are not eating enough or properly....
We are offered two different places to stay in Columbus - and they all knock themselves out a bit to Lysol everything in their house to make it as germless as possible. At Kristi's, Popop has really become one of Evelyn's favorite people and he so enjoys getting a chance to develop relationship with her. He lifts her up and drops her on the couch on top of a pile of pillows, and she laughs and laughs and wants to do it again. They are sick this week - so we are staying with Heidi and I have been promised a tea party in bed after chemo "to make me feel better". Is that not the most awesome thing - to have two different "spoil-you" places to nest in while I wait for my 24-hours-later-injection??
I remember having small kids and know that extra cleaning and extra work and extra groceries are not all that easy to do, so I doubly appreciate it all. I hate to bring this darkness into their homes, but they swing their doors wide and welcome us warmly.
4. I have a husband that gives the most appropriate hugs at the most needed times. He knows if he hugs me this week, it's like holding three shedding dogs to your chest, but he still does it. He laughs with me when I need him to, and hugs me tight when I need those bear hugs most.
5. I have a God that has sustained me and is healing me and I don't know how to say "thank-you". But I thank Him each morning that I wake up and have breath. I pray blessings over our children and grandchildren. I pray blessings over all of those that have helped us so sweetly in our greatest hour of need this past year. I pray that I will never forget to pray.
6. Even though our roof seems to be leaking, I am thankful for the rain. God has blessed. It's been a hard year for farmers and I am ever mindful of them and their hard work. And their reliance on the rain and sun in appropriate amounts at appropriate times. I am fully aware if I was a farmer, I would have hung myself in a shed a long time ago. It's a lot of hard work that can be totally wiped out with not enough rain, or too much rain.
7. I'm reaching here folks, but I am thankful for new flannel sheets. Even though they are covered in hair after one night......
8. I'm thankful we have a safe, safe car to travel back and forth to treatments with. God has so blessed us that way - it was a gift - and a gift I am thankful for every day. We cannot say thank you properly, but we feel so blessed and taken care of. Who just gives someone a car?? They said they wanted us to be safe, they wanted us to travel with easy minds, they wanted us to have it.... ??? I cannot begin to tell you the emotion that mounds within me every time we head out to Columbus - it has been awesome. They said they felt "God told them to do this". And the most amazing thing to me, is that they acted on it then. I cannot fathom it all. It was one of those few times in life that someone gives you a gift that you can never repay, you can never say thank you properly, you can never get it straight in your mind, but with all that, you just thank them and thank the God of the universe that ordains such things...
9. And look what just popped up on RVL's facebook page..... hmmmmm. I'm not sure I am triumphing over anything, but I do feel weak at time to overcome the battle....
RVL | ON
10. Brain cells seem to be coming around, so that gives me hope that my brain will not be totally fried with this chemo go-around.
11. (Number 11 - a bonus!) And last, I am thankful to my medical team - and God - for being alive. I could be completely full of rotten cancer cells by now, and hopefully, prayerfully, I'm not. Not now, not later. They are pretty awesome. I am thankful that from the signs of research, this cancer treatment will not be the same in ten years. I am thankful that there are some celebrity faces on this Triple Negative Breast Cancer to raise awareness and get monies for research. They are finding out more about it each day. And for the record for all of you needing to know, mine started with the tumor in my armpit in the lymph glands, then moved down. Don't put off hot swollen lumps anywhere.
So it's not the easiest time in my life, but each time I visit my cancer center, I am reminded there are far worse things in life - like having no one to take you to treatments. Or not having money to meet your bills. Or not having a soft cushion to fall on in the workplace. There are a lot of people that have had to leave their job or take early retirements or go on disability and I am thankful that for the moment, those needs are all met.
I won't have any hair in a few days, but for the moment I am so blessed.
Day 14, just like clockwork, it started to come out. So then I thought, "maybe my scalp won't hurt so much this time around".
Day 17, it started to hurt. My son offered his clippers for my personal use again. I turned him down, saying "maybe it won't fall out so fast this time".
Day 20, there is hair all over my shirt today. Hair all over my pillows. Hair all over the house. Scott came home from work on Monday, and I asked him "remember when I used to growl at my errant curls in my hair?" then I said "watch what I can do now", and I pulled out the most cantankerous curl..... just pulled it out. We laughed, he hugged me, then I cried a little.
I jumped into this chemo thinking it would be a little easier. It has been in some ways, but you don't escape anything, trust me.
I do have to say - even though I hate to put it down on paper as it seems everything I hope for gets dashed rather quickly - but I do have to say that it is nice to have some recovery days in between treatments.
Very nice.
This chemo has hit me depression-wise as well as it's other little gifts it bestowed. I think part of it is the drugs, but some of it is downright body revulsion - every time I think of going back Friday, I get literally nauseous. Like when you have the flu and get sick on a certain food and cannot bear to look at it again type revulsion-nausea.
Scott is very helpful - he tells me that after Friday, I will be halfway done. After doing six months of chemo weekly the first part of this year, three months of chemo spaced three weeks apart is a step down, but still not something I want to be doing.
And the revulsion has surprised me - that didn't happen last time.
So even though they pump you full of anti-nausea drugs, your body still screams "NO!!"
Plus, I am again protecting white blood cells. My white blood cell count was only .2 above low-normal when I started chemo again, so even with the Neulasta injection, I seem to be fighting off more than I want. And apparently, after my mouth infection and chemo sores, I am my own worst enemy.
Sigh.
Even though it has been a full-on clothesline type tackle stepping back into this, I have decided that I need to count my blessings. Or said another way, remember what is important. Or, as I tell Scott sometimes "just tell me ten good things".
1. Watching our oldest grandchild at her 6th birthday party - I know I will not always be invited to her parties with her friends - so I was not going to miss this for the world. She is amazing. She was diagnosed with a problem preventing her from playing contact sports - which in her life meant soccer - which she loved dearly. So at her party, she wanted to "play soccer!" which you have to say with a menacing-sports-face and great fire in your belly. She was pretty awesome leading the pack of "bees" all around the field - I want that heart-picture to stay with me always. She has a dear heart and is so conscious about others feelings, yet leads the way with her arms in the air yelling like a banshee - everyone loves her. Especially her Popop and Grandmum.
2. We have amazing friends throughout all of this. It has been a long year for me, and I am totally tired of this so I can imagine that they must get the same "battle-weariness". But they keep helping and sending cards, emails, talking and making me stay involved in the world when I would rather just not.
3. I can't say enough about our kids and their help through all of this. I have an out-venting kitchen fan because Scotty and Wes took time to install it. I don't have to smell meat cooking anymore. Or smell anything in the kitchen anymore. It's awesome.
Scotty keeps sending down food - I think he is concerned we are not eating enough or properly....
We are offered two different places to stay in Columbus - and they all knock themselves out a bit to Lysol everything in their house to make it as germless as possible. At Kristi's, Popop has really become one of Evelyn's favorite people and he so enjoys getting a chance to develop relationship with her. He lifts her up and drops her on the couch on top of a pile of pillows, and she laughs and laughs and wants to do it again. They are sick this week - so we are staying with Heidi and I have been promised a tea party in bed after chemo "to make me feel better". Is that not the most awesome thing - to have two different "spoil-you" places to nest in while I wait for my 24-hours-later-injection??
I remember having small kids and know that extra cleaning and extra work and extra groceries are not all that easy to do, so I doubly appreciate it all. I hate to bring this darkness into their homes, but they swing their doors wide and welcome us warmly.
4. I have a husband that gives the most appropriate hugs at the most needed times. He knows if he hugs me this week, it's like holding three shedding dogs to your chest, but he still does it. He laughs with me when I need him to, and hugs me tight when I need those bear hugs most.
5. I have a God that has sustained me and is healing me and I don't know how to say "thank-you". But I thank Him each morning that I wake up and have breath. I pray blessings over our children and grandchildren. I pray blessings over all of those that have helped us so sweetly in our greatest hour of need this past year. I pray that I will never forget to pray.
6. Even though our roof seems to be leaking, I am thankful for the rain. God has blessed. It's been a hard year for farmers and I am ever mindful of them and their hard work. And their reliance on the rain and sun in appropriate amounts at appropriate times. I am fully aware if I was a farmer, I would have hung myself in a shed a long time ago. It's a lot of hard work that can be totally wiped out with not enough rain, or too much rain.
7. I'm reaching here folks, but I am thankful for new flannel sheets. Even though they are covered in hair after one night......
8. I'm thankful we have a safe, safe car to travel back and forth to treatments with. God has so blessed us that way - it was a gift - and a gift I am thankful for every day. We cannot say thank you properly, but we feel so blessed and taken care of. Who just gives someone a car?? They said they wanted us to be safe, they wanted us to travel with easy minds, they wanted us to have it.... ??? I cannot begin to tell you the emotion that mounds within me every time we head out to Columbus - it has been awesome. They said they felt "God told them to do this". And the most amazing thing to me, is that they acted on it then. I cannot fathom it all. It was one of those few times in life that someone gives you a gift that you can never repay, you can never say thank you properly, you can never get it straight in your mind, but with all that, you just thank them and thank the God of the universe that ordains such things...
9. And look what just popped up on RVL's facebook page..... hmmmmm. I'm not sure I am triumphing over anything, but I do feel weak at time to overcome the battle....
RVL | ON
10. Brain cells seem to be coming around, so that gives me hope that my brain will not be totally fried with this chemo go-around.
11. (Number 11 - a bonus!) And last, I am thankful to my medical team - and God - for being alive. I could be completely full of rotten cancer cells by now, and hopefully, prayerfully, I'm not. Not now, not later. They are pretty awesome. I am thankful that from the signs of research, this cancer treatment will not be the same in ten years. I am thankful that there are some celebrity faces on this Triple Negative Breast Cancer to raise awareness and get monies for research. They are finding out more about it each day. And for the record for all of you needing to know, mine started with the tumor in my armpit in the lymph glands, then moved down. Don't put off hot swollen lumps anywhere.
So it's not the easiest time in my life, but each time I visit my cancer center, I am reminded there are far worse things in life - like having no one to take you to treatments. Or not having money to meet your bills. Or not having a soft cushion to fall on in the workplace. There are a lot of people that have had to leave their job or take early retirements or go on disability and I am thankful that for the moment, those needs are all met.
I won't have any hair in a few days, but for the moment I am so blessed.
Monday, September 17, 2012
Angst, Fever and Trumpets
Some information I pass on for free......
Number 1: If you are ever diagnosed with a major disease, don't do it on December 22nd, before the whole medical world shuts down for ten days. And then consequently, schedules out two to four weeks further.
Number 2: Don't get sick on a Friday night. Especially if you need to talk to a doctor.
When my chemo nurse was going through all of the possible side effects on my first "chemo-Friday" over a week ago, I was like "this can't be worse than chemo three days a week, can it?"
She kind of looked at me sideways, said something about "really liking the patients that got this chemo round second because they already know a lot of what to expect", and then proceeded with her explanations, saying I would feel the hit on days 4 and 5, and then to be cautious around germs especially days 7 - 14.
I felt pretty bad on Day 3, and thought if Day 4 is worse, this might not be such a cake walk. Then, Day 4 felt better than Day 3, and Day 5 felt better than Day 4, and I whispered words like "easy". Then, to folks inquiring to 'how was I feeling', typed words like "easy-breezy".
And maybe I even said one "eezy-peezy-breezy" outloud.
Thursday morning, Day 6, I woke up, stretched, felt better and thought "ok, one chemo treatment down, three to go"......
Friday morning I got up, took a walk, saw the twins awesome home school work that they are doing (I cannot believe the state standards now for kindergarten - they used the word "adjective", then explained what the word meant. I think the first time I heard that word was in fourth grade....)
But anyways, all to say, I was feeling pretty good. I got home, laid on the couch for some serious HG-TV "Candice Tells All" time catch-up, mostly with my eyes closed, and suddenly, by 8pm, I am shaking like a leaf. Like a "check your temperature" leaf.
One of the big rules of chemo is that your immunity is pretty severely compromised the longer you go. Some weeks the last chemo go-around, I was lucky to put two good white blood cells together in six months. Realizing that, they give you sound, stern warnings, numerous times to the effect "that if your temperature is 100.5, go immediately to an emergency room!!" Go to have a blood count done, and get possible IV antibiotics - because you don't have the immunity to play around and "wait and see".
They frankly tell you that an infection could swirl through you pretty quickly and you could be *dead* if you wait around too long.
So I check my temperature Friday night, and it is 100.2. If it was Friday afternoon, I could have called my doctor. If it was Thursday evening, I could have talked to my doctor. But unless you have been in the Friday night black hole of needing to find a doctor - your doctor - you may not realize the great space oddity of medical care - 5pm Friday afternoon until 8am Monday morning is not the time to get sick.
As they say on NatGeo TV, when you get that close to a black hole, there's no hope for you - just bend over and kiss it all good-bye.
We could have gone to our local ER, but I don't have any connection there to my family doctor, and I sit in a communal waiting room - germy and non-germ patients all together - strep and staph and MRSA and meningitis and me! all sitting cozily together - meaning if I was not sick when I went in, I would more than likely be when I walked out, due to a lower immunity.
We weren't sure if 100.2 warranted a drive to OSU/James Cancer ER facility. If it was my second or more chemo, I wouldn't have wavered. But this was my first chemo in this round, and I had also had the Neulasta Injection to prop up my wimpy bone-marrow-generating-good-cells- capabilities, so we waited an hour and took my temperature again.
99.4.
Alrighty. Go to bed, try to warm up, get rid of the shakes and take it again in an hour - 100.4.
The callback I had put into my oncologists office came in, and it was your most basic, general, all-chemo-in-the-whole-wide-world-after-hours-medical-response: "Do what you feel comfortable with. If it goes up to 100.5, definitely come in."
"You're not connected directly with my doctors at the Stephanie Spielman Center?"
"no, this is an answering service."
"What if it's 100.4?"
"That's up to you."
I think there was a forced smile in her voice.
ARGH!!!!
I started packing a bag, took my temp like 18 more times, then like after 15 times of "let's go", then "no, it just dropped down again" and back and forth and back and forth, then at 4am we just gave up and went to bed.
I don't say the words "if I die before I wake" quite so simply any longer......
After another painful 'generalized-chemo-response-nurse-call' on Saturday, where I begged her to just send a simple message to my doctor or even one of my 20 chemo nurses there - only to be declined - we kept pushing a cut-off time later and later due to the above or below 100 cut off set in our minds now, then I finally did the unthinkable.
I dug through my meds and found an unfinished antibiotic from this past May, and I started it Saturday evening, went to bed not feeling so well again, and earnestly prayed for the best.
(And in case you wonder, yeah, I am probably watching way too much NatGeo TV now. I'm also fond of the "Big Bears" saga, and the "Big Cats" anytime they are on.)
Sunday morning, 98.4.
Monday morning, a prompt callback from my dear oncologists office.
The last time this happened, she had given me her business card, again, and circled her cell phone number and said "call me". I had carefully taped all of the many and diverse business cards I have collected this past year in a date planner book to have for quick reference, especially in case of emergency. I cleaned out my "go-bag" before surgery, and I have absolutely no idea where the most logical place in the world would be for me to have safely stashed it.
For those folks like me who errantly lose their most precious phone numbers, you go to the ER or wait until Monday morning.
I should add a "Number 3" to the above list just from this side of hindsight: Don't do chemo on Fridays. That makes your Day 7, Day 14, or more notoriously known as the "times you most likely need to talk to someone in the doctor's office days" out of time-step with regular office hours.
***
I am tired of the loss of time to disease and treatment. The week after the first chemo is kind of a blur because of the companion drugs they give you to jump over that hump of poison they pour into you. The step-down anti-nausea drug Phenergan and such aren't that much better at keeping time. I feel like I lose whole days, whole clumps of days, a whole week because I may be upright and seeming halfway fine, but my brain is taking a beating.
Again.
And yes, I am whining.
As much as they help to strip your memory, the drugs do little to help with sleep. Insomnia has been a constant companion for over a decade. So as I lay awake this morning at 2am, I check my phone, check my messages because I am too groggy to do it in the evening, and then lay there and think.
I woke up Sunday morning dreaming about my grandmother's sugar cookies. She would whip up a batch of baking every other day - breads, cinnamon rolls, butterscotch cookies, chocolate chip cookies, and her claim to fame - "Millie's old fashioned sugar cookie".
She had a steel step-back hutch in her kitchen that had a pull out shelf, and you could walk into her house many days and find pies or breads or warm cookies piled up cooling on the enamel. Her sugar cookies never had frosting, they were a spongier, cake type almost cookie, but it was a recipe from her mother - meaning it was truly an old fashioned sugar cookie. She was born in 1890.
But I woke up smelling her secret ingredient of nutmeg in those cookies. I had been dreaming about how I used to eat them - they were bigger cookies, so I folded them in half to dip them in milk. Or tea. My grandmother made a pot of tea each morning and drank from it all day long.
In my dream, I had been sitting in my Grandmother's warm kitchen again, before everyone else got up, sipping tea with her and dipping sugar cookies before breakfast.
This morning, no dream to think on and remember. Just wide awake, irritated that I am in treatment again. Irritated that I don't feel the best again. Irritated that I can feel the weakness sweeping over me again, breaking down my blood cells faster than a Neulasta Injection can replenish.
While looking at a dark ceiling, I did remember that it was the official day for the Feast of Trumpets. The day God set aside to remember the creation of humans. The day set aside for the first day in God's calendar of months and years, or New Year's, if you will.
Along with it being the anniversary of the creation of Adam and Eve, it seems to carry a little bit more significance than I had originally thought. It's also considered a time to reflect on the first man and woman and their first reaction toward the realization of mankind's role in God's world.
Humph.
And yet there is more. Because of that the Jews believe that Rosh Hashanah, or the Biblical Feast of Trumpets, "emphasizes the special relationship between God and humanity -- our dependence on God as our creator and sustainer, and God's dependence upon us as the ones who make His presence known and felt in His world."
The last part just kind of blows me away. "God's *dependence* on us"???? wowsers.
So this morning as I lay there wide awake at 2am, I'm reading this, and thinking and thankful and getting out of the rut of feeling sorry for myself and thinking it is as the first Rabbi I ever listened to said, "Now, GO, REFLECT GOD!"
I take that back - the first Rabbi I listened to said "love one another as yourself".
My brain yells out "heed those words", all of them, because if the Jews are right, God's kind of depending on us to do that. Yikes.
***
Also, on NatGeo, I watched an interview of George Bush recounting 9/11. Regardless of how you feel about George Bush, seeing the views and the pictures and the horror, and then realizing what that horror that day brought about for hundreds of thousands of families like ours that were eventually touched by it, made me weep.
It's been over a decade and we are still fighting that war. I know there are lots of views on it, lots of opinions, lots of spouting, but, today of all days, I wonder if there has been a lot of praying over it all.
While our son was deployed, I wasn't sure that most of Americans realized that we were in a war in two different nations - fighting the same terrorists. Most didn't seem to know what some were giving up. By the time if filtered down to most of America, it was mostly rhetoric.
So we argued and bickered and talked philosophy, but there was not a lot of noticeable, concerted prayer. At least from the view at my bleacher seat.
I pray today, that if this day of the new year God does truly evaluate humans and their deeds and we are today to truly pray for this next year coming that God would bless us, I would pray that we first of all tend to our souls, but remember the soldiers and then pray for unity and pray for peace.
Honestly, every time my injured nerve endings have screamed at me, I have thought of all those soldiers dealing with much more severe body trauma, and dealing with much more severe grief and heartache.
No one thought Germany and Japan would become friends and allies again after 1940. But they did. There were a lot of people praying then. I know that because I am married to a brilliant historian, and also, I have, ahem, been watching the Waltons as well, circa 1944.
Perhaps praying and realizing that God is depending on us as the ones who make His presence known and felt in this world is really key to turning the hearts of humankind. Maybe we should quit barking and start praying.
On the Feast of Trumpets, today, the trumpet blasts over 100 times to remind us to turn to God for the coming year, to pray for the coming year.
I am taking it much more seriously this year.
Maybe my "anonymous-gift-sender" said it best this week, "when you light a lamp for somebody, it will also brighten your own path."
Their remembrances of our plight and kindnesses have moved us greatly. The words more-so. This one already got the message.
Number 1: If you are ever diagnosed with a major disease, don't do it on December 22nd, before the whole medical world shuts down for ten days. And then consequently, schedules out two to four weeks further.
Number 2: Don't get sick on a Friday night. Especially if you need to talk to a doctor.
When my chemo nurse was going through all of the possible side effects on my first "chemo-Friday" over a week ago, I was like "this can't be worse than chemo three days a week, can it?"
She kind of looked at me sideways, said something about "really liking the patients that got this chemo round second because they already know a lot of what to expect", and then proceeded with her explanations, saying I would feel the hit on days 4 and 5, and then to be cautious around germs especially days 7 - 14.
I felt pretty bad on Day 3, and thought if Day 4 is worse, this might not be such a cake walk. Then, Day 4 felt better than Day 3, and Day 5 felt better than Day 4, and I whispered words like "easy". Then, to folks inquiring to 'how was I feeling', typed words like "easy-breezy".
And maybe I even said one "eezy-peezy-breezy" outloud.
Thursday morning, Day 6, I woke up, stretched, felt better and thought "ok, one chemo treatment down, three to go"......
Friday morning I got up, took a walk, saw the twins awesome home school work that they are doing (I cannot believe the state standards now for kindergarten - they used the word "adjective", then explained what the word meant. I think the first time I heard that word was in fourth grade....)
But anyways, all to say, I was feeling pretty good. I got home, laid on the couch for some serious HG-TV "Candice Tells All" time catch-up, mostly with my eyes closed, and suddenly, by 8pm, I am shaking like a leaf. Like a "check your temperature" leaf.
One of the big rules of chemo is that your immunity is pretty severely compromised the longer you go. Some weeks the last chemo go-around, I was lucky to put two good white blood cells together in six months. Realizing that, they give you sound, stern warnings, numerous times to the effect "that if your temperature is 100.5, go immediately to an emergency room!!" Go to have a blood count done, and get possible IV antibiotics - because you don't have the immunity to play around and "wait and see".
They frankly tell you that an infection could swirl through you pretty quickly and you could be *dead* if you wait around too long.
So I check my temperature Friday night, and it is 100.2. If it was Friday afternoon, I could have called my doctor. If it was Thursday evening, I could have talked to my doctor. But unless you have been in the Friday night black hole of needing to find a doctor - your doctor - you may not realize the great space oddity of medical care - 5pm Friday afternoon until 8am Monday morning is not the time to get sick.
As they say on NatGeo TV, when you get that close to a black hole, there's no hope for you - just bend over and kiss it all good-bye.
We could have gone to our local ER, but I don't have any connection there to my family doctor, and I sit in a communal waiting room - germy and non-germ patients all together - strep and staph and MRSA and meningitis and me! all sitting cozily together - meaning if I was not sick when I went in, I would more than likely be when I walked out, due to a lower immunity.
We weren't sure if 100.2 warranted a drive to OSU/James Cancer ER facility. If it was my second or more chemo, I wouldn't have wavered. But this was my first chemo in this round, and I had also had the Neulasta Injection to prop up my wimpy bone-marrow-generating-good-cells- capabilities, so we waited an hour and took my temperature again.
99.4.
Alrighty. Go to bed, try to warm up, get rid of the shakes and take it again in an hour - 100.4.
The callback I had put into my oncologists office came in, and it was your most basic, general, all-chemo-in-the-whole-wide-world-after-hours-medical-response: "Do what you feel comfortable with. If it goes up to 100.5, definitely come in."
"You're not connected directly with my doctors at the Stephanie Spielman Center?"
"no, this is an answering service."
"What if it's 100.4?"
"That's up to you."
I think there was a forced smile in her voice.
ARGH!!!!
I started packing a bag, took my temp like 18 more times, then like after 15 times of "let's go", then "no, it just dropped down again" and back and forth and back and forth, then at 4am we just gave up and went to bed.
I don't say the words "if I die before I wake" quite so simply any longer......
After another painful 'generalized-chemo-response-nurse-call' on Saturday, where I begged her to just send a simple message to my doctor or even one of my 20 chemo nurses there - only to be declined - we kept pushing a cut-off time later and later due to the above or below 100 cut off set in our minds now, then I finally did the unthinkable.
I dug through my meds and found an unfinished antibiotic from this past May, and I started it Saturday evening, went to bed not feeling so well again, and earnestly prayed for the best.
(And in case you wonder, yeah, I am probably watching way too much NatGeo TV now. I'm also fond of the "Big Bears" saga, and the "Big Cats" anytime they are on.)
Sunday morning, 98.4.
Monday morning, a prompt callback from my dear oncologists office.
The last time this happened, she had given me her business card, again, and circled her cell phone number and said "call me". I had carefully taped all of the many and diverse business cards I have collected this past year in a date planner book to have for quick reference, especially in case of emergency. I cleaned out my "go-bag" before surgery, and I have absolutely no idea where the most logical place in the world would be for me to have safely stashed it.
For those folks like me who errantly lose their most precious phone numbers, you go to the ER or wait until Monday morning.
I should add a "Number 3" to the above list just from this side of hindsight: Don't do chemo on Fridays. That makes your Day 7, Day 14, or more notoriously known as the "times you most likely need to talk to someone in the doctor's office days" out of time-step with regular office hours.
***
I am tired of the loss of time to disease and treatment. The week after the first chemo is kind of a blur because of the companion drugs they give you to jump over that hump of poison they pour into you. The step-down anti-nausea drug Phenergan and such aren't that much better at keeping time. I feel like I lose whole days, whole clumps of days, a whole week because I may be upright and seeming halfway fine, but my brain is taking a beating.
Again.
And yes, I am whining.
As much as they help to strip your memory, the drugs do little to help with sleep. Insomnia has been a constant companion for over a decade. So as I lay awake this morning at 2am, I check my phone, check my messages because I am too groggy to do it in the evening, and then lay there and think.
I woke up Sunday morning dreaming about my grandmother's sugar cookies. She would whip up a batch of baking every other day - breads, cinnamon rolls, butterscotch cookies, chocolate chip cookies, and her claim to fame - "Millie's old fashioned sugar cookie".
She had a steel step-back hutch in her kitchen that had a pull out shelf, and you could walk into her house many days and find pies or breads or warm cookies piled up cooling on the enamel. Her sugar cookies never had frosting, they were a spongier, cake type almost cookie, but it was a recipe from her mother - meaning it was truly an old fashioned sugar cookie. She was born in 1890.
But I woke up smelling her secret ingredient of nutmeg in those cookies. I had been dreaming about how I used to eat them - they were bigger cookies, so I folded them in half to dip them in milk. Or tea. My grandmother made a pot of tea each morning and drank from it all day long.
In my dream, I had been sitting in my Grandmother's warm kitchen again, before everyone else got up, sipping tea with her and dipping sugar cookies before breakfast.
This morning, no dream to think on and remember. Just wide awake, irritated that I am in treatment again. Irritated that I don't feel the best again. Irritated that I can feel the weakness sweeping over me again, breaking down my blood cells faster than a Neulasta Injection can replenish.
While looking at a dark ceiling, I did remember that it was the official day for the Feast of Trumpets. The day God set aside to remember the creation of humans. The day set aside for the first day in God's calendar of months and years, or New Year's, if you will.
Along with it being the anniversary of the creation of Adam and Eve, it seems to carry a little bit more significance than I had originally thought. It's also considered a time to reflect on the first man and woman and their first reaction toward the realization of mankind's role in God's world.
Humph.
And yet there is more. Because of that the Jews believe that Rosh Hashanah, or the Biblical Feast of Trumpets, "emphasizes the special relationship between God and humanity -- our dependence on God as our creator and sustainer, and God's dependence upon us as the ones who make His presence known and felt in His world."
The last part just kind of blows me away. "God's *dependence* on us"???? wowsers.
So this morning as I lay there wide awake at 2am, I'm reading this, and thinking and thankful and getting out of the rut of feeling sorry for myself and thinking it is as the first Rabbi I ever listened to said, "Now, GO, REFLECT GOD!"
I take that back - the first Rabbi I listened to said "love one another as yourself".
My brain yells out "heed those words", all of them, because if the Jews are right, God's kind of depending on us to do that. Yikes.
***
Also, on NatGeo, I watched an interview of George Bush recounting 9/11. Regardless of how you feel about George Bush, seeing the views and the pictures and the horror, and then realizing what that horror that day brought about for hundreds of thousands of families like ours that were eventually touched by it, made me weep.
It's been over a decade and we are still fighting that war. I know there are lots of views on it, lots of opinions, lots of spouting, but, today of all days, I wonder if there has been a lot of praying over it all.
While our son was deployed, I wasn't sure that most of Americans realized that we were in a war in two different nations - fighting the same terrorists. Most didn't seem to know what some were giving up. By the time if filtered down to most of America, it was mostly rhetoric.
So we argued and bickered and talked philosophy, but there was not a lot of noticeable, concerted prayer. At least from the view at my bleacher seat.
I pray today, that if this day of the new year God does truly evaluate humans and their deeds and we are today to truly pray for this next year coming that God would bless us, I would pray that we first of all tend to our souls, but remember the soldiers and then pray for unity and pray for peace.
Honestly, every time my injured nerve endings have screamed at me, I have thought of all those soldiers dealing with much more severe body trauma, and dealing with much more severe grief and heartache.
No one thought Germany and Japan would become friends and allies again after 1940. But they did. There were a lot of people praying then. I know that because I am married to a brilliant historian, and also, I have, ahem, been watching the Waltons as well, circa 1944.
Perhaps praying and realizing that God is depending on us as the ones who make His presence known and felt in this world is really key to turning the hearts of humankind. Maybe we should quit barking and start praying.
On the Feast of Trumpets, today, the trumpet blasts over 100 times to remind us to turn to God for the coming year, to pray for the coming year.
I am taking it much more seriously this year.
Maybe my "anonymous-gift-sender" said it best this week, "when you light a lamp for somebody, it will also brighten your own path."
Their remembrances of our plight and kindnesses have moved us greatly. The words more-so. This one already got the message.
Wednesday, September 12, 2012
The Miracle on Tarragon Dr.
Sometimes, I think there is not one thing left to be said about chemo that I have not said already.
We are again entering into the chemo boxing ring, round 2. ding.
The bell sounding the start to this event is pathetically ambivalent itself.
I showed up at my beloved Stephanie Spielman Center on the proper date, proper time, opened the doors and walked in smiling, saying a warm "hello" to my dear check-in lady Jane. We laughed, she said she was glad to see me. I told her I could not be more pleased to be back.
And I meant every word.
In case you are that one out of a thousand people that I have neglected to mention this to, I. don't. want. to. do. this. chemo. round. But when you walk into a facility where not only your doctors and nurses are the best, but everyone from the front desk to the check-ins, from the lab folks, to the EKG people, MRI, mammogram and ultrasound - all these people want the best outcome for you, and they truly treat you like they like you, and will earnestly do their very smartest-best for you - you can't help liking a place like that.
But I had decided I was going to explore this "extra three days of steroids thing" one more time with the staff and doctors there. I might have looked all congenial and all, but there was a cement wall inside me that didn't want to budge.
I put on my "power-lips" lipstick and we all had a chat. It was a pleasant chat as I love them all and would never be stupid enough to alienate the best medical-relationships I have going on in my life right now, but I employed the old adage - "the squeaky wheel gets the oil" -- meaning I whined enough about the upcoming steroids for this treatment, that they picked up the phone and talked with the main pharmacist on staff there and he quoted a new study on the use of different follow-up-chemo-meds with these chemos and that we could try them maybe.
The pharmacist on the other end of that office phone had me at "we could try" ..... I was all in.
Let's see, using steroids for three days or jumping head first into the briar patch? I'd choose the briar patch every time. Um, rolling down a steep hill littered with big boulders, or three extra days of steroids? The boulders could not be that hard. Or, three days of steroids or driving a school bus full of juvenile delinquents? Well, it wouldn't be fair to the kids.
I have great regard for pharmacists. They have educated me, helped me, given me good advice, so I was on board. But this was beyond the brightest star - imagine as I heard those words from their "best" pharmacist, David Cassidy playing in the background .....oooooooohhhhhh I THINK I LOVE YOU...... http://www.youtube.com/watch?v=Ttmp5JapObw (The Power of Women banner is just a bonus here folks)
This man was able to cut my steroid dosing by three-fourths. He could have cut them by 1/8 and my brain still would have burst into song.
Over the phone they went back and forth and he said I could work around the steroid thing. I told them to tell him that even though I did not know who he was, that I *love* him on the spot. I told them if I saw him at that moment, I would kiss him.
I was a little bit embarrassed when the nurse laughed and told him to get his lips sanitized and ready for when he met me in my chemo room. (Imagine me, a little red faced hearing the words "we'll see you upstairs in a moment"...) I did not know I was going to have a meeting with him as well..... When they hung up the phone, the nurses were all laughing. Scott was amused as well.
Smugly amused I thought.
Now, I feel a bit sheepish. BUT - there is now a new "No Steroid Dance" that only happens in the halls of the third floor of the Stephanie Speilman Center.
***
Doing the steroid-go-around might have all come down to the fact that they were a little afraid for Scott. My daughter and her non-profit Domestic Violence work place have done a lot of seminars with hospitals, doctor's offices, law enforcement and such, training ones how to determine if there is violence in the home, then how to handle those patients and get them safe. So she always asks me "did they ask you?". Meaning did they ask the DV question? "Did they have everyone leave the room when they asked it?"
I'm like her little James Bond in a pocket.
Stephanie Speilman Center is big on asking the question, but because Scott is who he is, they don't ask him to leave the room. So they score 50%. In fact, this one might have been a bit different, I might have been the only patient where they thought they should ask the caretaker, not the patient. Something like "Sir, after your significant other is dosed with steroids do you feel safe at home?" At which Scott would have laughed, and they would have thought maybe he was laughing to cover up his pain, but he would say "I'm guessing that on her last steroid blasts she could have thrown my favorite tv out the front window and it would not have hit ground for 300 feet, no problem". He didn't say that, but he is just the teeniest bit afraid of his prized tv, and you kind of got that all in one look from Scott.
They *got* the ugly steroid picture, so I meet the main pharmacist.
For the record, I only promise to kiss other guys who are much younger than I, or that I have no chance of meeting. He ended up being neither, but the tips of his ears were a little pink until I told him he was completely safe with me.
He did complement my hair, but did not seem disappointed that the promised overly exuberant kiss was now off the table...
I told him my brain was all on board for this round of chemo, understood it, knew I needed it -- but on the other hand, my body was flailing and screaming bloody murder. In fact, he said he had noted the drag marks in the parking lot from my heels that morning.
The down side to this, was the fact that I would still have to take a mega dose of IV steroids - 20mg - which is like a bazillion mg dose to me - of steroids IV before getting the chemo. That's pretty standard on the first dose of chemo whichever way you wander through the chemo countryside, but the caveat was - the carrot in front of my brain and body was that the next day I would not be taking oral steroids that explode my brain, but rather a different drug. It's an unusual drug and I am not going to put it out there because it is the funniest thing around - but they said it does work for chemo patients and does slap down nausea for those three days after chemo as well as the steroids do.
I'll take it.
The Pharmacist even brought up a drug schedule for me, showing me how to change out these drugs, and then, glory to glory, he even helped make up a schedule for the "drop-off-day" when you switch over your anti-nausea big guns, to the lesser hand-held affairs.
If you know me very well, you know that when I hear a diagnosis or treatment plan, I am all over that. I look for the side effects. I look for drug interaction. I look for warnings. I look for the base in this drug they are using for treatment. I have a good idea what the chances are for success.
With these two chemos, I didn't even try to memorize what the "A" stands for. I was pretty sure the "C" stood for cry.
This go around, I trust them pretty much. There is great value in getting treatment at a research / teaching hospital. I have had doctors and nurses in my room discuss why one treatment or one drug is better than another. I get to hear a lot that may not normally be open for discussion in other treatment facilities.
I feel like I can be a little lazier this time around. They know what they are doing, and they have set up protocols to make chemo look like a whole nine inning ball game without an error.
So I'm back in. I had the IV steroid ever so slowly administered on Friday before they brought me my big three beautiful red syringes full of what is basically mold off of some plant. Then I had the Cytoxin drip. I was thrust into the midst of despair when I found that I was not going to get a Benadryl IV pre-med this time around.
No nap time with toasty warm white blankets for me this time around. So they brought me another blanket just to indulge me.
Abby reminded me that I at least did not have to fast with these chemos. So it's a fair trade-off maybe.
My nurse Abby was wonderful. She is awesome. She has my undying love and devotion. We talked for twenty minutes while she slowly, slowly, slowly delivered that evil steroid monster DECADRON!!! (doesn't that drug just have the most perfect name??)
And if you have never witnessed a miracle, nor believe in them, you should have been in my room after she pulled out that Decadron syringe that was hooked into my IV.
I got a little hot all of a sudden, I got a little irritated all of a sudden, but. that. was. it. 20mg's of steroids plunked into Karen, and she is not threatening to take over the world. Or at least demand somebody's head. There was no rumbling volcano ready to explode and exude hot coals on all around it.
It was a miracle that might have a good medical explanation behind, might not, but I will take it either way.
We were all pretty amazed. There were times that I was a little "sharp" in my comments, but I felt no need to fling around furniture and such.
We stayed overnight at Kristi's house then went in for my Neulasta injection, as we were adverse to picking it up and paying the $3,000 to do it at home, and they were the best hosts. Popop got a lot of "bounce Evie on the couch" time in and even got some "guy-football-time" in with Cal. They were pretty gracious letting us crash there.
It's not been a picnic, but hasn't been too bad, either. Think the kind of flu where you feel like you were placed inside of a cement mixer truck for three days. Your bones all hurt and you feel pretty nauseous, but you can still climb out of it. My nurse Abby called me on Tuesday and said "I have been so worried - how are you doing without the extra steroids?" and I honestly told her better than expected. She said "That's great!"
She knows that "better than expected' means I'm not vomiting. It means I'm not sicker than a dog. It means that my stomach is in torment and turmoil, but the meds are soothing over that. She knows that it means I don't have mouth sores today, but it feels like there are maybe 13 ready to pop out.
So she tells me what she always tells me - "Keep eating!!" "Keep Going!!"
***
God has so blessed us. We have no idea what our co-pay will end up being with this $4,000 Neulasta injection. I do know that OSU seems to have the most amazing coding system for bills - meaning I have not had to sit on the phone for hours with our insurance company fighting charges - the treatments are billed and coded correctly taking out that sick-person-caught-in-the-middle-angst.
But we are blessed. I have a husband who continuously uplifts me and holds me tight, I have kids that have married some great people and they all hold me tight, and I have five little wee ones that I absolutely could not adore more. They lift me up.
I told Chloe and Zoe last week that my hair would all be falling out again, trying to get them prepared and not be alarmed or sad or scared. I told them I was so glad that I had a HOPsital that took such good care of me and that I was glad when they put needles in me because it meant they were making me better.
I iced that cake pretty thick.
They looked a little sad and mournful, then Chloe walked up close to me and said "even if you don't have hair Grandmum, I think your pretty!"
Pre-schoolers just don't say things like that. They are dear. And I am blessed.
The knock-down has begun, and my eyes are sunk in and Scott says I am walking too painfully again, so I'm stepping back down into this canyon again but have all those around me linking to my safety rope, guiding me along.
I passed a little cancer patient in the hall of James/OSU when getting my Neulasta injection on Saturday. Those kids rip my heart out.
So, all in all, I'm doing just fine.
We are again entering into the chemo boxing ring, round 2. ding.
The bell sounding the start to this event is pathetically ambivalent itself.
I showed up at my beloved Stephanie Spielman Center on the proper date, proper time, opened the doors and walked in smiling, saying a warm "hello" to my dear check-in lady Jane. We laughed, she said she was glad to see me. I told her I could not be more pleased to be back.
And I meant every word.
In case you are that one out of a thousand people that I have neglected to mention this to, I. don't. want. to. do. this. chemo. round. But when you walk into a facility where not only your doctors and nurses are the best, but everyone from the front desk to the check-ins, from the lab folks, to the EKG people, MRI, mammogram and ultrasound - all these people want the best outcome for you, and they truly treat you like they like you, and will earnestly do their very smartest-best for you - you can't help liking a place like that.
But I had decided I was going to explore this "extra three days of steroids thing" one more time with the staff and doctors there. I might have looked all congenial and all, but there was a cement wall inside me that didn't want to budge.
I put on my "power-lips" lipstick and we all had a chat. It was a pleasant chat as I love them all and would never be stupid enough to alienate the best medical-relationships I have going on in my life right now, but I employed the old adage - "the squeaky wheel gets the oil" -- meaning I whined enough about the upcoming steroids for this treatment, that they picked up the phone and talked with the main pharmacist on staff there and he quoted a new study on the use of different follow-up-chemo-meds with these chemos and that we could try them maybe.
The pharmacist on the other end of that office phone had me at "we could try" ..... I was all in.
Let's see, using steroids for three days or jumping head first into the briar patch? I'd choose the briar patch every time. Um, rolling down a steep hill littered with big boulders, or three extra days of steroids? The boulders could not be that hard. Or, three days of steroids or driving a school bus full of juvenile delinquents? Well, it wouldn't be fair to the kids.
I have great regard for pharmacists. They have educated me, helped me, given me good advice, so I was on board. But this was beyond the brightest star - imagine as I heard those words from their "best" pharmacist, David Cassidy playing in the background .....oooooooohhhhhh I THINK I LOVE YOU...... http://www.youtube.com/watch?v=Ttmp5JapObw (The Power of Women banner is just a bonus here folks)
This man was able to cut my steroid dosing by three-fourths. He could have cut them by 1/8 and my brain still would have burst into song.
Over the phone they went back and forth and he said I could work around the steroid thing. I told them to tell him that even though I did not know who he was, that I *love* him on the spot. I told them if I saw him at that moment, I would kiss him.
I was a little bit embarrassed when the nurse laughed and told him to get his lips sanitized and ready for when he met me in my chemo room. (Imagine me, a little red faced hearing the words "we'll see you upstairs in a moment"...) I did not know I was going to have a meeting with him as well..... When they hung up the phone, the nurses were all laughing. Scott was amused as well.
Smugly amused I thought.
Now, I feel a bit sheepish. BUT - there is now a new "No Steroid Dance" that only happens in the halls of the third floor of the Stephanie Speilman Center.
***
Doing the steroid-go-around might have all come down to the fact that they were a little afraid for Scott. My daughter and her non-profit Domestic Violence work place have done a lot of seminars with hospitals, doctor's offices, law enforcement and such, training ones how to determine if there is violence in the home, then how to handle those patients and get them safe. So she always asks me "did they ask you?". Meaning did they ask the DV question? "Did they have everyone leave the room when they asked it?"
I'm like her little James Bond in a pocket.
Stephanie Speilman Center is big on asking the question, but because Scott is who he is, they don't ask him to leave the room. So they score 50%. In fact, this one might have been a bit different, I might have been the only patient where they thought they should ask the caretaker, not the patient. Something like "Sir, after your significant other is dosed with steroids do you feel safe at home?" At which Scott would have laughed, and they would have thought maybe he was laughing to cover up his pain, but he would say "I'm guessing that on her last steroid blasts she could have thrown my favorite tv out the front window and it would not have hit ground for 300 feet, no problem". He didn't say that, but he is just the teeniest bit afraid of his prized tv, and you kind of got that all in one look from Scott.
They *got* the ugly steroid picture, so I meet the main pharmacist.
For the record, I only promise to kiss other guys who are much younger than I, or that I have no chance of meeting. He ended up being neither, but the tips of his ears were a little pink until I told him he was completely safe with me.
He did complement my hair, but did not seem disappointed that the promised overly exuberant kiss was now off the table...
I told him my brain was all on board for this round of chemo, understood it, knew I needed it -- but on the other hand, my body was flailing and screaming bloody murder. In fact, he said he had noted the drag marks in the parking lot from my heels that morning.
The down side to this, was the fact that I would still have to take a mega dose of IV steroids - 20mg - which is like a bazillion mg dose to me - of steroids IV before getting the chemo. That's pretty standard on the first dose of chemo whichever way you wander through the chemo countryside, but the caveat was - the carrot in front of my brain and body was that the next day I would not be taking oral steroids that explode my brain, but rather a different drug. It's an unusual drug and I am not going to put it out there because it is the funniest thing around - but they said it does work for chemo patients and does slap down nausea for those three days after chemo as well as the steroids do.
I'll take it.
The Pharmacist even brought up a drug schedule for me, showing me how to change out these drugs, and then, glory to glory, he even helped make up a schedule for the "drop-off-day" when you switch over your anti-nausea big guns, to the lesser hand-held affairs.
If you know me very well, you know that when I hear a diagnosis or treatment plan, I am all over that. I look for the side effects. I look for drug interaction. I look for warnings. I look for the base in this drug they are using for treatment. I have a good idea what the chances are for success.
With these two chemos, I didn't even try to memorize what the "A" stands for. I was pretty sure the "C" stood for cry.
This go around, I trust them pretty much. There is great value in getting treatment at a research / teaching hospital. I have had doctors and nurses in my room discuss why one treatment or one drug is better than another. I get to hear a lot that may not normally be open for discussion in other treatment facilities.
I feel like I can be a little lazier this time around. They know what they are doing, and they have set up protocols to make chemo look like a whole nine inning ball game without an error.
So I'm back in. I had the IV steroid ever so slowly administered on Friday before they brought me my big three beautiful red syringes full of what is basically mold off of some plant. Then I had the Cytoxin drip. I was thrust into the midst of despair when I found that I was not going to get a Benadryl IV pre-med this time around.
No nap time with toasty warm white blankets for me this time around. So they brought me another blanket just to indulge me.
Abby reminded me that I at least did not have to fast with these chemos. So it's a fair trade-off maybe.
My nurse Abby was wonderful. She is awesome. She has my undying love and devotion. We talked for twenty minutes while she slowly, slowly, slowly delivered that evil steroid monster DECADRON!!! (doesn't that drug just have the most perfect name??)
And if you have never witnessed a miracle, nor believe in them, you should have been in my room after she pulled out that Decadron syringe that was hooked into my IV.
I got a little hot all of a sudden, I got a little irritated all of a sudden, but. that. was. it. 20mg's of steroids plunked into Karen, and she is not threatening to take over the world. Or at least demand somebody's head. There was no rumbling volcano ready to explode and exude hot coals on all around it.
It was a miracle that might have a good medical explanation behind, might not, but I will take it either way.
We were all pretty amazed. There were times that I was a little "sharp" in my comments, but I felt no need to fling around furniture and such.
We stayed overnight at Kristi's house then went in for my Neulasta injection, as we were adverse to picking it up and paying the $3,000 to do it at home, and they were the best hosts. Popop got a lot of "bounce Evie on the couch" time in and even got some "guy-football-time" in with Cal. They were pretty gracious letting us crash there.
It's not been a picnic, but hasn't been too bad, either. Think the kind of flu where you feel like you were placed inside of a cement mixer truck for three days. Your bones all hurt and you feel pretty nauseous, but you can still climb out of it. My nurse Abby called me on Tuesday and said "I have been so worried - how are you doing without the extra steroids?" and I honestly told her better than expected. She said "That's great!"
She knows that "better than expected' means I'm not vomiting. It means I'm not sicker than a dog. It means that my stomach is in torment and turmoil, but the meds are soothing over that. She knows that it means I don't have mouth sores today, but it feels like there are maybe 13 ready to pop out.
So she tells me what she always tells me - "Keep eating!!" "Keep Going!!"
***
God has so blessed us. We have no idea what our co-pay will end up being with this $4,000 Neulasta injection. I do know that OSU seems to have the most amazing coding system for bills - meaning I have not had to sit on the phone for hours with our insurance company fighting charges - the treatments are billed and coded correctly taking out that sick-person-caught-in-the-middle-angst.
But we are blessed. I have a husband who continuously uplifts me and holds me tight, I have kids that have married some great people and they all hold me tight, and I have five little wee ones that I absolutely could not adore more. They lift me up.
I told Chloe and Zoe last week that my hair would all be falling out again, trying to get them prepared and not be alarmed or sad or scared. I told them I was so glad that I had a HOPsital that took such good care of me and that I was glad when they put needles in me because it meant they were making me better.
I iced that cake pretty thick.
They looked a little sad and mournful, then Chloe walked up close to me and said "even if you don't have hair Grandmum, I think your pretty!"
Pre-schoolers just don't say things like that. They are dear. And I am blessed.
The knock-down has begun, and my eyes are sunk in and Scott says I am walking too painfully again, so I'm stepping back down into this canyon again but have all those around me linking to my safety rope, guiding me along.
I passed a little cancer patient in the hall of James/OSU when getting my Neulasta injection on Saturday. Those kids rip my heart out.
So, all in all, I'm doing just fine.
Wednesday, September 5, 2012
Down days....
Today has come and I am in "getting-prepared" mode. Today, I cut my fingernails back so they will not collect extra germs, enabling me to get hand sanitizer into the most important 'germ-holding' parts easier. Today, I clean my bedroom with the "germ-free" sanitizing cloths that my daughter bought for me in bulk in January. Today, I am eating up the fresh peaches that Scott bought me like crazy this past month. Soon, too soon, I will give up all fresh fruits and vegetables again.
Today and tomorrow, I am relishing my last cups of coffee for a while. They haven't told me I could not have coffee this chemo round, but after learning what coffee did to make my body not accept the chemo so readily last time, I think I need to give this chemo the best chance and walk away from the bitter cup for three months.
I don't want to do another preparation day like this again in my life.
I have my eye on the prize, and I am moving steadily to stepping back into chemo.
I cannot tell you on how many levels I don't want to do this. By the time I am done with this chemo round, and then done with radiation, this cancer treatment will have taken up all of my time for thirteen months. Over a year of my life devoted to fighting this. Over a year of Scott's life devoted to fighting this. Over a year of my kids life helping out and fighting this.
I so do not want to step back into this, and that may seem to be because I am dreading the chemo. Kind of, but what has Scott and me downright fearful, downright "skeered", is the fact that they have promised me at least three days of steroids after each treatment.
Think "Incredible Hulk". Think *mild mannered* (smile, hey it's my blog and I can enter viewpoints that I like at times even if not altogether true), happy to be here, smiling and chatting Karen all of a sudden bursting out of her blankets, turning a tremendous green and growling and talking louder and needing restraint - that's kind of my experience on steroids for ONE day - so we believe we have every right to be downright frightful.
As I type Scott may very well be looking up the word "straight-jacket" on the amazon.com website. I have no trouble imagining "straight jacket + gag" in that search box. And trust me, I would be on board with it all - like the Incredible Hulk, I have little control after being dosed. I had little control the last chemo round after they lowered my steroid dose to well under what they are going to give me this time around, for three days.
All of that aside, the worst part of steroids, is the crash. Each week I could feel the IV steroids start to wear off, and I knew I had just enough time to get into bed and cover up with two down blankets, one comforter that my mother had made years ago, and two fleece blankets - because the crash after steroids was like walking into a freezer locker and having the door shut behind you - you were in and there was no escape for a few hours. The nurses called it "steroid withdrawal", I just called it hell. The symptoms were very close to shock symptoms - trembling and shaking and freezing cold. And insult to injury, they said part of that scenario was the fact that as the steroids withdraw from your body, your chemo sees opportunity and rises up and slaps you hard.
I'm not looking forward to that almost eight hour time stretch again.
My "anonymous-mail-gifter" sent another gift, and the message was:
"Strength does not come from physical capacity. It comes from an indomitable will." Mahtma Gandhi.
I have always wanted to study Gandhi. I have read snippits, some pieces and parts and always greatly admired it all, but that was on my list to dive into after I was done with my Russian authors.
For the time being, I have to be happy with the "snippets".
But that has been on my treadmill for two weeks now, and I chew it over as I plod along. That and my "fighter songs" remind me to hold my head up and my shoulders back no matter how it feels. It reminds me to stand up and fight. It reminds me to dig deep and find some resolve that has been hidden away for a bit.
So as I'm working today in small bursts, I have my "fighter" song list up. I have used it a lot for my walk time on the treadmill. In fact, hearing those songs now in that order makes my body get active.
Kind of like Pavlov's dogs maybe.
As the song list was playing, they always suggest other songs for you to click on, and I clicked on one I had not listened to in maybe twenty-five years.
It's a little haunting and sad and yet reaffirming all at the same time, and that's how I'm feeling about going back into this chemo.
I don't want to, and there is not the urgency about this chemo as there was with the first six months, but on the other hand, I want to because every bump on my bones, every bump in my knotted arm, every bump suddenly takes on new significance - it needs to be looked at and examined and sometimes x-rayed or they place you in that wonderful cave for an MRI.
So I welcome this extra re-assurance. I welcome it in a "choosing to surrender to the Americans or Red Russian Army" kind of way in this war I'm stuck in the middle of.
As I am marching towards Yom Kippur, I found out that the ten days before that Holy Day are used to go around to all of the ones that you may have offended, or may have sinned against, or may unintentionally hurt, and those ten days especially every year are used for a chance to repent and make right.
Of course, the dialogue in my brain says I should be doing that all of the time, and I do try, but there is something about having a day set aside for making sure your soul is cleansed and pure before God. There's something about taking advantage of those ten days to really seek and scour it all out. There's something about laying that need for cleansing and purification before One that can take care of it all. There's something about seeking it, finding it, treating it, then purging it that sounds all very familiar to me in my medical war.
It's like thinking you cannot have cancer, then finding out you do, and then submitting to the seeking and testing and poison you have to accept into your body to cleanse it from all of that.
It's not pretty on either war front.
So as I have been singing this song over and over in my brain, I am thinking of "Deliverer" in different ways - the Deliverer of releasing a repentant soul from build up of sin over time, and then of course what weights my soul - Deliverer from plague, from the leaven that easily takes over the whole bread dough, delivered from the evil growing within me.
It has to all be knocked down after thorough examination and hurtful treatments, it's all kind of the same in my mind.
And then we celebrate our Deliverance.
Jehovah is Our Deliverer, http://youtu.be/1QS7c7kUy80
Let all who know the Lord as their God
Bow before Him and worship
And lift your voice and tremble before Him
Jehovah is our Deliverer
Hallelujah, We praise the name of Jehovah
Behold Him now
In all of His glory
King of Kings forever
Arise and see His glorious power
Jesus reigns as our Savior
Hallelujah, hallelujah,
We praise the name of Jehovah
***
Another song that I've turned to today is in Isaiah, which I have been listening to over and over again on my audio Bible, and this one goes through my head.
My usual song taste turns towards Led Zeppelin, or the U2 Rattle and Hum, but this "softer" sound holds me today.
So, an 'indomitable will' quote from a different religion; strength, soul-song, and Deliverer all keep going through my brain this past week as I feel like I was walking towards something I was dreading - but needing - it's all wrapped up to fortify me and make me ready.
Ready for both.
Behold God, Strength and Song, http://youtu.be/c1UFzi4JCqA
Isaiah 12
You will say in that day:
"I will give thanks to you, O Lord,
for though you were angry with me,
your anger turned away,
that you might comfort me.
Behold, God is my salvation;
I will trust, and will not be afraid;
for the Lord God is my strength and my song,
and He has become my salvation.
With joy you will draw water from the wells of salvation. And you will say in that day:
"Give thanks to the Lord,
call upon His name,
make known His deeds among the peoples,
proclaim that His name is exalted.
"Sing praises to the Lord, for He has done gloriously;
let this be made known in all the earth.
Shout and sing for joy, O inhabitant of Zion,
for great in your midst is the Holy One of Israel."
***
Then, I'm planning to celebrate. This is on my Fighter list:
http://www.youtube.com/watch?v=PJ0WyPAELsk&feature=share&list=PLB028EB324D5948BC
Today and tomorrow, I am relishing my last cups of coffee for a while. They haven't told me I could not have coffee this chemo round, but after learning what coffee did to make my body not accept the chemo so readily last time, I think I need to give this chemo the best chance and walk away from the bitter cup for three months.
I don't want to do another preparation day like this again in my life.
I have my eye on the prize, and I am moving steadily to stepping back into chemo.
I cannot tell you on how many levels I don't want to do this. By the time I am done with this chemo round, and then done with radiation, this cancer treatment will have taken up all of my time for thirteen months. Over a year of my life devoted to fighting this. Over a year of Scott's life devoted to fighting this. Over a year of my kids life helping out and fighting this.
I so do not want to step back into this, and that may seem to be because I am dreading the chemo. Kind of, but what has Scott and me downright fearful, downright "skeered", is the fact that they have promised me at least three days of steroids after each treatment.
Think "Incredible Hulk". Think *mild mannered* (smile, hey it's my blog and I can enter viewpoints that I like at times even if not altogether true), happy to be here, smiling and chatting Karen all of a sudden bursting out of her blankets, turning a tremendous green and growling and talking louder and needing restraint - that's kind of my experience on steroids for ONE day - so we believe we have every right to be downright frightful.
As I type Scott may very well be looking up the word "straight-jacket" on the amazon.com website. I have no trouble imagining "straight jacket + gag" in that search box. And trust me, I would be on board with it all - like the Incredible Hulk, I have little control after being dosed. I had little control the last chemo round after they lowered my steroid dose to well under what they are going to give me this time around, for three days.
All of that aside, the worst part of steroids, is the crash. Each week I could feel the IV steroids start to wear off, and I knew I had just enough time to get into bed and cover up with two down blankets, one comforter that my mother had made years ago, and two fleece blankets - because the crash after steroids was like walking into a freezer locker and having the door shut behind you - you were in and there was no escape for a few hours. The nurses called it "steroid withdrawal", I just called it hell. The symptoms were very close to shock symptoms - trembling and shaking and freezing cold. And insult to injury, they said part of that scenario was the fact that as the steroids withdraw from your body, your chemo sees opportunity and rises up and slaps you hard.
I'm not looking forward to that almost eight hour time stretch again.
My "anonymous-mail-gifter" sent another gift, and the message was:
"Strength does not come from physical capacity. It comes from an indomitable will." Mahtma Gandhi.
I have always wanted to study Gandhi. I have read snippits, some pieces and parts and always greatly admired it all, but that was on my list to dive into after I was done with my Russian authors.
For the time being, I have to be happy with the "snippets".
But that has been on my treadmill for two weeks now, and I chew it over as I plod along. That and my "fighter songs" remind me to hold my head up and my shoulders back no matter how it feels. It reminds me to stand up and fight. It reminds me to dig deep and find some resolve that has been hidden away for a bit.
So as I'm working today in small bursts, I have my "fighter" song list up. I have used it a lot for my walk time on the treadmill. In fact, hearing those songs now in that order makes my body get active.
Kind of like Pavlov's dogs maybe.
As the song list was playing, they always suggest other songs for you to click on, and I clicked on one I had not listened to in maybe twenty-five years.
It's a little haunting and sad and yet reaffirming all at the same time, and that's how I'm feeling about going back into this chemo.
I don't want to, and there is not the urgency about this chemo as there was with the first six months, but on the other hand, I want to because every bump on my bones, every bump in my knotted arm, every bump suddenly takes on new significance - it needs to be looked at and examined and sometimes x-rayed or they place you in that wonderful cave for an MRI.
So I welcome this extra re-assurance. I welcome it in a "choosing to surrender to the Americans or Red Russian Army" kind of way in this war I'm stuck in the middle of.
As I am marching towards Yom Kippur, I found out that the ten days before that Holy Day are used to go around to all of the ones that you may have offended, or may have sinned against, or may unintentionally hurt, and those ten days especially every year are used for a chance to repent and make right.
Of course, the dialogue in my brain says I should be doing that all of the time, and I do try, but there is something about having a day set aside for making sure your soul is cleansed and pure before God. There's something about taking advantage of those ten days to really seek and scour it all out. There's something about laying that need for cleansing and purification before One that can take care of it all. There's something about seeking it, finding it, treating it, then purging it that sounds all very familiar to me in my medical war.
It's like thinking you cannot have cancer, then finding out you do, and then submitting to the seeking and testing and poison you have to accept into your body to cleanse it from all of that.
It's not pretty on either war front.
So as I have been singing this song over and over in my brain, I am thinking of "Deliverer" in different ways - the Deliverer of releasing a repentant soul from build up of sin over time, and then of course what weights my soul - Deliverer from plague, from the leaven that easily takes over the whole bread dough, delivered from the evil growing within me.
It has to all be knocked down after thorough examination and hurtful treatments, it's all kind of the same in my mind.
And then we celebrate our Deliverance.
Jehovah is Our Deliverer, http://youtu.be/1QS7c7kUy80
Let all who know the Lord as their God
Bow before Him and worship
And lift your voice and tremble before Him
Jehovah is our Deliverer
Hallelujah, We praise the name of Jehovah
Behold Him now
In all of His glory
King of Kings forever
Arise and see His glorious power
Jesus reigns as our Savior
Hallelujah, hallelujah,
We praise the name of Jehovah
***
Another song that I've turned to today is in Isaiah, which I have been listening to over and over again on my audio Bible, and this one goes through my head.
My usual song taste turns towards Led Zeppelin, or the U2 Rattle and Hum, but this "softer" sound holds me today.
So, an 'indomitable will' quote from a different religion; strength, soul-song, and Deliverer all keep going through my brain this past week as I feel like I was walking towards something I was dreading - but needing - it's all wrapped up to fortify me and make me ready.
Ready for both.
Behold God, Strength and Song, http://youtu.be/c1UFzi4JCqA
Isaiah 12
You will say in that day:
"I will give thanks to you, O Lord,
for though you were angry with me,
your anger turned away,
that you might comfort me.
Behold, God is my salvation;
I will trust, and will not be afraid;
for the Lord God is my strength and my song,
and He has become my salvation.
With joy you will draw water from the wells of salvation. And you will say in that day:
"Give thanks to the Lord,
call upon His name,
make known His deeds among the peoples,
proclaim that His name is exalted.
"Sing praises to the Lord, for He has done gloriously;
let this be made known in all the earth.
Shout and sing for joy, O inhabitant of Zion,
for great in your midst is the Holy One of Israel."
***
Then, I'm planning to celebrate. This is on my Fighter list:
http://www.youtube.com/watch?v=PJ0WyPAELsk&feature=share&list=PLB028EB324D5948BC
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