I have been set free. I have been given a little reprieve - and I am still smiling over it all.
Just for a month, but it still feels good. My daily radiation treatments for six weeks were slated to start the first week of December - just three weeks out from my last chemo. I met with my new doctor, the Radiology Oncologist, Dr. White, and the appointment between her and talking with her "fellow", lasted over two and a half hours.
I have more knowledge about radiation now than when I first set up the OSHA manual at work years and years ago.
Being too quirky honest at times, I told her up front I came into this appointment with my insides kicking and screaming. I don't want radiation. It's going to hit my heart some. It's going to hit 30% of my left lung and leave some scar tissue behind. It's going to contribute to heart disease with problems with the arteries in the vicinity. I knew all that walking into the appointment, and she confirmed it all and more, and I just sat there.
She is very straight-forward and doesn't mince words, and asked me after explaining all of that "why don't you want to do this?" I laughed because of the obvious and told her that I knew this radiation would turn around and bite me in the ass in twenty years.
She told me it might, but first let's. just. get. to. twenty. years. She again went over the nature of my disease, the staging, the risks, and said "better twenty years than four, hmmm??" with one eyebrow raised.
She said I'm young, (smile inside, yes I did) I'm relatively healthy considering my past year or more, and this will give me an even more 10-15% chance of non-recurrence.
She also said that she has been published as "the doctor that doesn't treat unnecessarily" meaning just because you have one type of cancer she doesn't automatically throw you into radiation treatment without looking over everything, everything and then making that decision.
After looking over everything, and noting some "misses" that I should have had done at the very beginning, and the fact that I missed my last Taxol treatment, she said she wants me "in".
I had one foot in.
Then she said my oncologist's new "fellow", had noted another round of Taxol for me after radiation - and nothing else in this appointment brought every cell in my body to rapt, focused attention in that exam room faster than that one word. I told her it was a new fellow and that was probably a mistake as I'VE HAD SIX MONTHS OF TAXOL - like how much more can my damaged nerve endings take of that stuff??!!!
I also reminded her that they had just kindly tried to kill me with three months of their latest healing kindnesses and I was sure my liver could not take anymore.
She just kind of waved her hand like that's between you and your oncologist, but noted that maybe doing the radiation would null and void any further need of "that stuff".
Oh they are naughty-good sales people there........
I jumped. Both feet, full body.
Then she gave me the month off. I think mostly because after I told them proudly that I drove myself that day, they looked at me and considered the safety of the roadways, and gave me an extra four weeks.
But in all reality, it seems to be more about "missing days". She's not a huge fan of that. In fact, if we have a blizzard, I think I will pack a suitcase and hang out in the lounge after she explained the importance of it all.
She said she doesn't like me missing any days after I start, and as a rule they close for two days at Christmas and one day at New Years, plus they all have an "everything breast cancer convention" to attend for three days the first week of December, so that knocks out a lot of days right off the bat.
And...... there is also that little problem of hubby needing a surgery for his gall bladder which we are desperately hoping happens in December as he has had three more pretty severe attacks since he got home from the hospital and we are not sure how long he can go without eating as everything seems to bring on an attack.
I told him it's like being at the bowling alley -- as soon as one stone drops down into the duct and clears after pain meds and clear fluids for 24 hours -- another one lines up to drop down. He must have a gall bladder full of them, which is what his doctor mentioned.
Oyi.
So I officially start my six weeks of radiation January 2nd. Also known as the six worst driving weeks of the year in northern Ohio.
Another reason we are waiting and causing more trips to Columbus is that with the last chemo treatment, my arm "seized" up again. I could hardly straighten it out one morning....... so even though I have been working with it a lot and have made great strides, she said the "cording" that stretches from my elbow to my lower chest wall "has to go", or I'll never be able to do the long setup appointments. (I think I could have) I'm not sure why it happened as my arm had become pretty loose and working after physical therapy and my late-started-home-exercises before, and they are not sure why it happened, but it has happened and there is something that feels like a tight rope in there still.... She set me up with some PT appointments again.
Ode to lymph node removal......
***
Heidi stayed overnight last week with me, and noticed something about my closet. It has collapsed.
Literally.
The morning that we were leaving early for my second chemo treatment, I reached in to get a sweater - and the whole two racks just collapsed. There's a lot of stuff in there - I haven't rotated out seasonal clothes for over a year, I've been pulling out bigger sizes while I was swollen the first six months of chemo, then adding in smaller sizes, so it was working out to be the perfect storm.
Or the perfect collapse.
Which was fine - I mean you get to a point in life where that is just something that happens - not a life changing event. We were in a hurry, had to leave, closed the doors and that's the way it has been for a while with neither of us not feeling all that well. I've been wearing mostly sweats and sweatshirts anyways, so it wasn't like I was needing to get in there.
But Heidi saw it. And her husband decided to fix it when they stopped through over the weekend.
And I got a bonus - as we were pulling all the clothes out to enable them a chance to get work space, Heidi said "whoa, mom, there's like too many clothes in here".
And that was how my clothing intervention started. She's pretty tough. When they were young, I had a few closet rules: "If you haven't worn it in a year, it goes." Another one was, "if we buy it, you have to wear it five times".
Let's just say, sometimes life comes full circle. If I had a dollar for every time she asked me one of those questions that day, my retirement fund would be rebuilt. She filled up her car with the clothes, then took them to a second hand store in Columbus, and get this - SOLD THEM!!
But it was a solid day of work, with Heidi doing the brunt of it and also Wes and Scotty and Scott working on the closet repair, and it felt so good.
I have to be honest, it has been a long time since my house has had my intense organizational skills focused onto it alone. I mean, a long, long time.
Plus, we have a lady coming in and doing the bathrooms and dusting and such for us every several weeks. Anticipating her coming in, makes me look at our house through different eyes, and I am like, it's time to unload. It's time to reorganize. It's time to cleanse oneself of all built up "stuff".
So I kind of cleaned out the hall closet. And even gave away three comforters. I gave away a set of dishes - which is not a whole lot as I have quite a dish "fetish" if you will.
But it feels good to look around, and start to think about something else other than chemo and such.
***
We were feeling pretty bad Thanksgiving week. Scott had been in the hospital for a couple of days, I was not feeling top of the world and this was the year our kids all go to their in-laws for Thanksgiving, then will be here for Christmas.
We were ok with it all, and in fact, neither one of us felt up to cooking even. Then that evening Scotty walked in the front door with a roasted duck on a platter that any magazine cover would envy - roasted duck, roasted veggies all around it and dressing.
It was a thing of beauty.
We shared our mashed potatoes, and just cried a little, thinking how blessed we were. I felt halfway bad because the girls were all dressed up and yelled "Happy Thanksgiving" when they got to the door.
We all said what we were thankful for in prayer before the meal. Scott ate gently.
It was the best Thanksgiving ever - we didn't plan it, we didn't think anything of event could happen that day, but Scotty and Leila and Chloe and Zoe brought a lot of joy into the lives of two very "bilious" feeling people that evening.
And you should have tasted his cranberry sauce..........
***
So all in all, one of life's greatest ironies is being played out at our house this week - I suddenly have a strong desire for a Panera Bread salad - and Scott who loves all things eating out - couldn't go and take a bite without causing all kinds of painful alarms to go off in his body.
We keep looking at each other and say "you do what you gotta do to get where you need to be"..... he stuck pretty close by me this past year and has been quite easy on my stomach, so I am sneaking things during the day -- like today I had my first roast beef sandwich in maybe a whole year. It was pretty tasty. So as my sense of taste comes back, I only indulge it in secret.
I do feel so blessed to be coming back to the land of the living - I have spent too much time laying flat out in bed.
This Sabbath day, we are feeling blessed.
Friday, November 30, 2012
Wednesday, November 21, 2012
Priestly Visits
They send you home with drugs that have words on the labels like "for the treatment of schizophrenia", or the real-deal anti-psychotic drugs; or they are for anxiety -- they send them home with you because they use them in what medical professionals call "off label use" -- they are the best they have found so far to combat nausea after chemo.
Not only are you wiped out and put down for the count with chemo, but your brain and mind also enter the battle as you take drugs that your psyche doesn't need - but your body does.
For days while on these drugs, not only are you emotionally drained from the pain and sickness of it all, you are emotionally challenged because suddenly your brain is working in reverse. Not only does super low red blood cells make me weep openly and suddenly, but the drugs they send home with me make me think there is little hope - for anything.
Today is Day 13 after chemo, and my stomach lining decided to start a come-back yesterday. My gastro has calmed considerably. I am beginning to feel real saliva in my mouth that does not include the metal-maalox taste. I still cannot do kitchen smells, nor garbage smells, nor look at raw meat.
I used to have the most iron-clad stomach. When I worked at the veterinary clinic I assisted with surgeries at times. Other times I would stand in the surgery room door to be able to talk with my boss and go over my checklists with him - multi-tasking if you will - while eating my lunch. Some pretty hideous injuries would walk through the door, and I never blinked an eye.
I know from my time spent at the orthodontist as a lab tech, a lot of people are not so lucky. Many have a pretty easy gag reflex and get queasy just thinking about putting a tray of impression material into their mouths. I remember the day one patient vomited so hardily they hit the window several feet away.
In my whole lifetime, I have rarely vomited.
Chemo changes your whole stomach. It changes your esophagus. It changes your gastro. It changes the lining of your mouth. If I accidentally see raw meat now, I am gagging over the sink. Still today. Thirteen days out.
The drugs they give you are supposed to change that "click" in your brain - make your brain make your body believe that it's not wanting to vomit.
This has been the most miserable three months of my life. I have never felt so weak, so sick, so strategically laid low. I have never been so depressed some days. I have never hurt so bad. It's been a while, but I might have exchanged a couple of child-births without drugs for many of those days.
When I showed up for my last chemo thirteen days ago, the blood work showed pretty poorly still, so my doctor decided to cut my chemo by 20% and still give it. My red blood cells are more of the culprit this time, and I remember that every time I go up steps or any type of incline and demand more oxygen from them - they can't give it even yet.
Since she was cutting the chemo some, I asked to use steroids longer and cut out the other drugs - and then "step down" to only one drug that had agreed with me since January - with little mental side-effects.
I. was. smashed. And still depressed. And still hurting. And still down. But I wasn't hallucinating, I wasn't dreaming nightmares, and I wasn't looking for high windows.
She had told me at the beginning that she was going to "whallop me" with this chemo to increase my chances of non-recurrence. (whallop is my word, not hers, but my brain is so far down the road, I don't remember a lot of things like certain words used)
I didn't think it was going to be this bad, and even if it was, I thought I could endure anything for three months.
I probably won't say things like that again.
I cannot, cannot tell you how relieved my body is knowing this is hopefully my last chemo ever. I pray no one, no one that I know will ever be "whalloped" like this. I pray I never forget the depth of feeling I have anytime I hear of anyone suffering now.
***
When I do Christmas letters - the annual ones that go out maybe every three years or so as I'm not all that good at Christmas cards - I have mused that I am never at a loss for good, raw material to include in those letters. This year is no different.
Scott woke me up Sunday night about midnight and I took him to the emergency room. He was having pretty severe pain across his lower chest and was vomiting again. He has been vomiting off and on for four weeks, and kept making excuses, kept saying he was fine, anything to not head north to Cleveland again for a visit with his gastro doctor there.
After a CAT scan, they told him he had good-size gallstones in his gall bladder duct. We transferred to the Cleveland Clinic hoping to maybe get a fast surgery and be done with this, but were disappointed to hear that they would rather him wait six weeks for the surgery after his gall bladder and such have had time to "calm down". Wait on the inflammation to go down.
He was instructed to not eat any fried foods, nor to indulge in fats. You might as well have burned his wagon and left him on the Oregon trail buried up to his neck in fire ants.
Our daughter Heidi, God bless her, came up to help me out on Monday - I practiced driving to Cleveland with her in the car to be sure I could, then she drove me home that night and stayed over. Then she drove me up Tuesday morning, and I brought Scott home Tuesday evening while she headed off to her in-laws for Thanksgiving week.
About Lodi, I think my adrenaline finally gave out, but we made it home quite nicely.
Scott is feeling better, but enormously tired still. If he is feeling anything else, he is not telling me just yet.
So we are quite an odd pair here - he wants to eat, and is incredibly desirous of foods he can't have. I don't care so much if I eat, and am quite content to eat basic things just to keep my stomach happy.
***
With all of our hospital stays over the past 12 years, I have told Scott we should write a book along the lines of "through the curtain", or "on the shuttle bus", or "conversations on the elevator". While in a hospital, you almost always have a room mate, and it always makes for some extra stress or extra pleasure depending on who is on the other side of that curtain. Many times, you don't even see who it is, you just start talking.
Scott's first room mate this week was Paul. He was 81 and had just had a tumor removed from his tear duct. It looked painful, but he was cheerful and had a wonderful voice. He told Scott that he knew almost every square inch of the view from his window - that he had grown up in that neighborhood all those decades ago.
On Tuesday, his wife and her friend came to pick him up. They told Scott all about their own gall bladder stories, which were all encouraging, wished us well and left. Paul said that when he came back soon "to see the Rear Admiral", he was hoping to have another good room mate like Scott. I asked Scott what he meant after he left, and he said he was coming back for a colonoscopy.
Wes brought Addy and Millie in to see Scott and pick up Heidi mid afternoon, and they walked up to his bed and their first words were "YOU HAVE A BEARD, POPOP!!"
Then they properly admired his IV and asked him if it had hurt. They put his bed up and down a bit and thought the hospital wasn't such a bad place after all. Maybe.
They left, we started paperwork to go home hoping to beat rush hour traffic, and then waited. And waited.
They brought another patient for Paul's bed. He was about our age, walked in with jeans and a T-shirt coming from another wing of the hospital. His wife carried his bag. He got into bed and asked her to pull the curtain back so he could see us and talk to us. He asked me if I minded if he got into his boxers. I saw he didn't have hair under his hat, saw he was thinner than when he had bought his jeans; I saw his port sticking out from his t-shirt sleeve and told him he could strip naked if he wanted, I would not be bothered.
He was getting pain management after the trial study they had driven to Cleveland to get into didn't work out, then heading back to Roswell to get back into the study he had left there. They were from upper state New York.
He had leukemia. His bone marrow transplant had failed and he was getting into studies to try to stop the fatal march of his disease. His wife said his doctor had told him he "had Christmas". They had asked about his birthday in the spring, and his doctor didn't know. Two weeks ago, his bone marrow was 90% gone, but then had come back up some and they didn't know why or which treatment might have helped.
We talked back and forth and shared stories. He had also started his treatments in January.
They both knew his wife was going to be a widow soon if one of the studies did not miraculously change his bone marrow and fight his disease.
We could not help but listen to his intake. The nurse said she was hoping to win the lottery - he told her that she would never believe how little money they had at that moment and how happy they were. The nurse asked him if he felt safe at home. He told her that neither one of them had ever raised a hand to each other. He told her that they loved each other more now than they had when they married twenty-five years ago.
He was a Catholic, and asked for Holy Communion.
When we left, we stopped at the foot of his bed and told them we would be praying for them. Steve and Corrina.
Journeys in *Cancer Land*.
***
Actually, it was another "God-moment" that has been so lavishly laid out in front of me time after time this past year.
A couple of days before my third treatment, I was feeling better, so my sister-in-law Polly took me out for the day. We traveled to Norwalk, Ohio, and went to all her favorite shops - and of all things, I bought a pink coffee table in a second hand furniture store. It barely fit into the back seat of her car.
I still smile every day when I look at it in my brown and gold living room. It smiles back at me and says "I have potential!" "You are going to love repainting me one day!" "I am the perfect size, perfect shape!" I haven't seen potential in anything for a long time.
That coffee table and I are friends - it has made me look ahead and think about something other than loathing chemo for brief moments.
Polly has keen eyes, and she knew I wasn't quite in step with everything, so after a few shops she took me to a coffee shop. When we pulled into the parking lot behind it, a woman walking a dog leaned over and smiled and waved at me in the car. I kind of knew what this might all mean - God was directing someone's steps once again to directly coincide with mine - to directly meet me and send me a gift.
We got out of the car and walked towards the door. The woman caught up to us, walked in with us and she asked me how long I had been in chemo. We talked a bit about surviving chemo, then she told me she had been diagnosed in her early thirties, the very year she had taken on the care of her sister's six young children.
She smiled at me like these people all do that God sends, gave me a big hug, and said "you're going to make it - you're going to be ok". They say that, because I don't look so much like I'm going to make it. I don't look so much like I'm going to be ok. But they say it like it came straight from God. She blessed me, then her kids who were now teenagers all needed her and we said good-bye.
When we got our coffee - "it was on the house". She was the owner.
Polly and I sat at a window table and Polly marveled at what had just happened. I told Polly it was not all that uncommon these days. I told her that as bad as I had felt with this chemo round, that my *hope-meter* was in the basement. And just when I thought that I could not walk back into that fourth floor chemotherapy door in two days, God would send me one the likes of Melchizadek out of nowhere. A high priest from God Himself, committed to blessing me. They always radar onto me and will not be done until they have caught me, anointed me, and encouraged me with the breath of heaven.
Leukemia-Steve told me when we were talking "it doesn't matter how much time you have - you have today".
***
I cried while walking beside the gentleman pushing the wheelchair taking Scott down to the hospital exit. He was older than me, with an accent. He asked me if I was ok, and I told him we had just left talking with a patient who had leukemia.
He told me he believed in God and that there were no mistakes in God's kingdom. After we left Scott in the pick up room, he walked out with me and said "I want to tell you again, there are no mistakes in God's kingdom. Everything has a purpose, everything has a plan".
Normally, I hate to hear those words because I think they are things that Christians say that they don't really believe, or words that are easy to vocalize and hide behind when they don't really know them.
When this gentleman said this to me, I knew that God was speaking through him. I thanked him, and blessed him, and walked out to get the car from the parking garage.
***
I start six weeks of radiation the first week of December. It will end up being seven weeks with the holidays falling as they do. There have not been any full recovery breaks this year - I've gone from six months of chemo to surgery to chemo then to radiation.
My doctor said my blood counts will not have had time to recover, but she wants me there and she wants me to just take it easy, rest a lot, and finish the course.
I don't know why God has me walking this long journey, but I am picking up the gold nuggets along the way, examining them, putting them into a pouch for later use and reflection.
And this week with neither Scott nor I in the full flush of health - in fact you won't find a hint of flush even close by - yet, we are thankful. There is so much hurting and pain and misery in the world - especially within the communities of the "unhealthy" - that sometimes it is hard to see beyond the fire burning about you, the flood waters trying to sweep you away.
But we are thankful because we have today. We are thankful we have a God. We are thankful to be met on a journey by those sent from God to minister to us more than we ever thought possible to experience.
And tonight, from my deepest bone marrow trying desperately to repair, I am thankful that while I count out the days from chemo, that I am no longer counting the dreaded days until the next chemo.
Not only are you wiped out and put down for the count with chemo, but your brain and mind also enter the battle as you take drugs that your psyche doesn't need - but your body does.
For days while on these drugs, not only are you emotionally drained from the pain and sickness of it all, you are emotionally challenged because suddenly your brain is working in reverse. Not only does super low red blood cells make me weep openly and suddenly, but the drugs they send home with me make me think there is little hope - for anything.
Today is Day 13 after chemo, and my stomach lining decided to start a come-back yesterday. My gastro has calmed considerably. I am beginning to feel real saliva in my mouth that does not include the metal-maalox taste. I still cannot do kitchen smells, nor garbage smells, nor look at raw meat.
I used to have the most iron-clad stomach. When I worked at the veterinary clinic I assisted with surgeries at times. Other times I would stand in the surgery room door to be able to talk with my boss and go over my checklists with him - multi-tasking if you will - while eating my lunch. Some pretty hideous injuries would walk through the door, and I never blinked an eye.
I know from my time spent at the orthodontist as a lab tech, a lot of people are not so lucky. Many have a pretty easy gag reflex and get queasy just thinking about putting a tray of impression material into their mouths. I remember the day one patient vomited so hardily they hit the window several feet away.
In my whole lifetime, I have rarely vomited.
Chemo changes your whole stomach. It changes your esophagus. It changes your gastro. It changes the lining of your mouth. If I accidentally see raw meat now, I am gagging over the sink. Still today. Thirteen days out.
The drugs they give you are supposed to change that "click" in your brain - make your brain make your body believe that it's not wanting to vomit.
This has been the most miserable three months of my life. I have never felt so weak, so sick, so strategically laid low. I have never been so depressed some days. I have never hurt so bad. It's been a while, but I might have exchanged a couple of child-births without drugs for many of those days.
When I showed up for my last chemo thirteen days ago, the blood work showed pretty poorly still, so my doctor decided to cut my chemo by 20% and still give it. My red blood cells are more of the culprit this time, and I remember that every time I go up steps or any type of incline and demand more oxygen from them - they can't give it even yet.
Since she was cutting the chemo some, I asked to use steroids longer and cut out the other drugs - and then "step down" to only one drug that had agreed with me since January - with little mental side-effects.
I. was. smashed. And still depressed. And still hurting. And still down. But I wasn't hallucinating, I wasn't dreaming nightmares, and I wasn't looking for high windows.
She had told me at the beginning that she was going to "whallop me" with this chemo to increase my chances of non-recurrence. (whallop is my word, not hers, but my brain is so far down the road, I don't remember a lot of things like certain words used)
I didn't think it was going to be this bad, and even if it was, I thought I could endure anything for three months.
I probably won't say things like that again.
I cannot, cannot tell you how relieved my body is knowing this is hopefully my last chemo ever. I pray no one, no one that I know will ever be "whalloped" like this. I pray I never forget the depth of feeling I have anytime I hear of anyone suffering now.
***
When I do Christmas letters - the annual ones that go out maybe every three years or so as I'm not all that good at Christmas cards - I have mused that I am never at a loss for good, raw material to include in those letters. This year is no different.
Scott woke me up Sunday night about midnight and I took him to the emergency room. He was having pretty severe pain across his lower chest and was vomiting again. He has been vomiting off and on for four weeks, and kept making excuses, kept saying he was fine, anything to not head north to Cleveland again for a visit with his gastro doctor there.
After a CAT scan, they told him he had good-size gallstones in his gall bladder duct. We transferred to the Cleveland Clinic hoping to maybe get a fast surgery and be done with this, but were disappointed to hear that they would rather him wait six weeks for the surgery after his gall bladder and such have had time to "calm down". Wait on the inflammation to go down.
He was instructed to not eat any fried foods, nor to indulge in fats. You might as well have burned his wagon and left him on the Oregon trail buried up to his neck in fire ants.
Our daughter Heidi, God bless her, came up to help me out on Monday - I practiced driving to Cleveland with her in the car to be sure I could, then she drove me home that night and stayed over. Then she drove me up Tuesday morning, and I brought Scott home Tuesday evening while she headed off to her in-laws for Thanksgiving week.
About Lodi, I think my adrenaline finally gave out, but we made it home quite nicely.
Scott is feeling better, but enormously tired still. If he is feeling anything else, he is not telling me just yet.
So we are quite an odd pair here - he wants to eat, and is incredibly desirous of foods he can't have. I don't care so much if I eat, and am quite content to eat basic things just to keep my stomach happy.
***
With all of our hospital stays over the past 12 years, I have told Scott we should write a book along the lines of "through the curtain", or "on the shuttle bus", or "conversations on the elevator". While in a hospital, you almost always have a room mate, and it always makes for some extra stress or extra pleasure depending on who is on the other side of that curtain. Many times, you don't even see who it is, you just start talking.
Scott's first room mate this week was Paul. He was 81 and had just had a tumor removed from his tear duct. It looked painful, but he was cheerful and had a wonderful voice. He told Scott that he knew almost every square inch of the view from his window - that he had grown up in that neighborhood all those decades ago.
On Tuesday, his wife and her friend came to pick him up. They told Scott all about their own gall bladder stories, which were all encouraging, wished us well and left. Paul said that when he came back soon "to see the Rear Admiral", he was hoping to have another good room mate like Scott. I asked Scott what he meant after he left, and he said he was coming back for a colonoscopy.
Wes brought Addy and Millie in to see Scott and pick up Heidi mid afternoon, and they walked up to his bed and their first words were "YOU HAVE A BEARD, POPOP!!"
Then they properly admired his IV and asked him if it had hurt. They put his bed up and down a bit and thought the hospital wasn't such a bad place after all. Maybe.
They left, we started paperwork to go home hoping to beat rush hour traffic, and then waited. And waited.
They brought another patient for Paul's bed. He was about our age, walked in with jeans and a T-shirt coming from another wing of the hospital. His wife carried his bag. He got into bed and asked her to pull the curtain back so he could see us and talk to us. He asked me if I minded if he got into his boxers. I saw he didn't have hair under his hat, saw he was thinner than when he had bought his jeans; I saw his port sticking out from his t-shirt sleeve and told him he could strip naked if he wanted, I would not be bothered.
He was getting pain management after the trial study they had driven to Cleveland to get into didn't work out, then heading back to Roswell to get back into the study he had left there. They were from upper state New York.
He had leukemia. His bone marrow transplant had failed and he was getting into studies to try to stop the fatal march of his disease. His wife said his doctor had told him he "had Christmas". They had asked about his birthday in the spring, and his doctor didn't know. Two weeks ago, his bone marrow was 90% gone, but then had come back up some and they didn't know why or which treatment might have helped.
We talked back and forth and shared stories. He had also started his treatments in January.
They both knew his wife was going to be a widow soon if one of the studies did not miraculously change his bone marrow and fight his disease.
We could not help but listen to his intake. The nurse said she was hoping to win the lottery - he told her that she would never believe how little money they had at that moment and how happy they were. The nurse asked him if he felt safe at home. He told her that neither one of them had ever raised a hand to each other. He told her that they loved each other more now than they had when they married twenty-five years ago.
He was a Catholic, and asked for Holy Communion.
When we left, we stopped at the foot of his bed and told them we would be praying for them. Steve and Corrina.
Journeys in *Cancer Land*.
***
Actually, it was another "God-moment" that has been so lavishly laid out in front of me time after time this past year.
A couple of days before my third treatment, I was feeling better, so my sister-in-law Polly took me out for the day. We traveled to Norwalk, Ohio, and went to all her favorite shops - and of all things, I bought a pink coffee table in a second hand furniture store. It barely fit into the back seat of her car.
I still smile every day when I look at it in my brown and gold living room. It smiles back at me and says "I have potential!" "You are going to love repainting me one day!" "I am the perfect size, perfect shape!" I haven't seen potential in anything for a long time.
That coffee table and I are friends - it has made me look ahead and think about something other than loathing chemo for brief moments.
Polly has keen eyes, and she knew I wasn't quite in step with everything, so after a few shops she took me to a coffee shop. When we pulled into the parking lot behind it, a woman walking a dog leaned over and smiled and waved at me in the car. I kind of knew what this might all mean - God was directing someone's steps once again to directly coincide with mine - to directly meet me and send me a gift.
We got out of the car and walked towards the door. The woman caught up to us, walked in with us and she asked me how long I had been in chemo. We talked a bit about surviving chemo, then she told me she had been diagnosed in her early thirties, the very year she had taken on the care of her sister's six young children.
She smiled at me like these people all do that God sends, gave me a big hug, and said "you're going to make it - you're going to be ok". They say that, because I don't look so much like I'm going to make it. I don't look so much like I'm going to be ok. But they say it like it came straight from God. She blessed me, then her kids who were now teenagers all needed her and we said good-bye.
When we got our coffee - "it was on the house". She was the owner.
Polly and I sat at a window table and Polly marveled at what had just happened. I told Polly it was not all that uncommon these days. I told her that as bad as I had felt with this chemo round, that my *hope-meter* was in the basement. And just when I thought that I could not walk back into that fourth floor chemotherapy door in two days, God would send me one the likes of Melchizadek out of nowhere. A high priest from God Himself, committed to blessing me. They always radar onto me and will not be done until they have caught me, anointed me, and encouraged me with the breath of heaven.
Leukemia-Steve told me when we were talking "it doesn't matter how much time you have - you have today".
***
I cried while walking beside the gentleman pushing the wheelchair taking Scott down to the hospital exit. He was older than me, with an accent. He asked me if I was ok, and I told him we had just left talking with a patient who had leukemia.
He told me he believed in God and that there were no mistakes in God's kingdom. After we left Scott in the pick up room, he walked out with me and said "I want to tell you again, there are no mistakes in God's kingdom. Everything has a purpose, everything has a plan".
Normally, I hate to hear those words because I think they are things that Christians say that they don't really believe, or words that are easy to vocalize and hide behind when they don't really know them.
When this gentleman said this to me, I knew that God was speaking through him. I thanked him, and blessed him, and walked out to get the car from the parking garage.
***
I start six weeks of radiation the first week of December. It will end up being seven weeks with the holidays falling as they do. There have not been any full recovery breaks this year - I've gone from six months of chemo to surgery to chemo then to radiation.
My doctor said my blood counts will not have had time to recover, but she wants me there and she wants me to just take it easy, rest a lot, and finish the course.
I don't know why God has me walking this long journey, but I am picking up the gold nuggets along the way, examining them, putting them into a pouch for later use and reflection.
And this week with neither Scott nor I in the full flush of health - in fact you won't find a hint of flush even close by - yet, we are thankful. There is so much hurting and pain and misery in the world - especially within the communities of the "unhealthy" - that sometimes it is hard to see beyond the fire burning about you, the flood waters trying to sweep you away.
But we are thankful because we have today. We are thankful we have a God. We are thankful to be met on a journey by those sent from God to minister to us more than we ever thought possible to experience.
And tonight, from my deepest bone marrow trying desperately to repair, I am thankful that while I count out the days from chemo, that I am no longer counting the dreaded days until the next chemo.
Friday, November 16, 2012
Cancer Friends
There was a light knock on my door mid-week, and even though I was barely presentable, barely moving well, I opened the door. It was my "cancer-friend" from across the lake. Even though I didn't really know them as of last year, her husband had "friended" me on facebook when he found out my diagnosis last December. They have both dealt with cancer and he was still fighting it.
This past year we have become beneficiaries of her recipe club she participates in - she has dropped off meals and brownies for us at the best possible times. She stops for a bit, chats, then leaves.
She has a bit of a what I am guessing is a soft Scottish brogue, and when she saw me at the door not too much on this side of life, she said "oh, you are not feeling well", and then she said she wouldn't stay, but just wanted to let me know that they had taken her husband to hospice that day.
I could not stop the immediate tears.
I just hugged her neck and begged her to come in for a moment if she could. We sat close together on the couch and she told me his condition. She told me that they had not been able to finish his radiation and chemo he had undertaken a few months ago. She told me he had not emailed me recently because he wasn't able to tell me.
She said he had wanted her to stop and tell me now about the hospice, he knew I would want to know.
I cried and cried and told her how sorry I was. I tried to put into words what his online friendship had meant to me. I tried to tell her, but my words were woefully inept.
I wanted to tell her about the times when it seems that all my friends had forgotten me, nor had time, nor had inclination to know what to do for me, I would see a message from Bill in my in-box and know it would be full of encouragement and hope and a reminder that above all else to stay in the fight.
He was one to talk to and commiserate with, yet one to be glad that we had another day to feel life's blessing on us.
And I think that is how it goes mostly. Maybe, those that have been in the fight are the ones to talk to about the fight, because it is difficult for others to understand. Maybe like soldiers coming home from a war they cannot talk about to anyone else, because the trauma doesn't make sense to anyone else.
Walking through "cancer-land" is can be a mine field and it is wearying to the best. To throw yourself in with another and help shoulder the load some days is comforting, and to talk with ones that know the "in-country fighting", and aren't afraid to talk about the battles and ugliness because they have seen those trenches, is a help to a war-weary heart.
That's what Bill was to me - a friend in the trenches that I would not have known otherwise. You tell them things you wouldn't tell anyone else. You share pain that no one else will understand. It's the every-day-ness of the battle that you can talk to someone about it all - someone who shares that same every-day-ness.
Diane left a message on my phone last night - Bill had died.
She had no tears, she is a strong lady.
I listened mostly all night to my online Bible, and prayed for him, for them.
I was reminded that we are all "vapors", we are all suspect to the same outcome to this thing called life. I lay there and thought about what Bill had done for me with just simple typing, simple reaching out, simple words. I so appreciate his help.
One of his favorite things to say was a quote from his father: "we can stands most anything".
I know I will really miss him.
Monday, November 5, 2012
My vote tomorrow.....
I could have saved America a whole lot of money this past year and narrowed this whole campaign down to a few things - the first on my list being Interstate 71, north of Columbus.
In Morrow County, specifically.
I have traveled 71 quite a bit the past five plus years and more, and have flipped my brain in many different directions trying to understand why, why, why! Morrow County has not had to finish their widening project. You can be cruising along at 76 miles per hour, and suddenly there is a mad dash by three lanes of loaded traffic merging into two lanes at the Morrow County line. It slows considerably depending on the time of day, and many times after a bit of two-laning it, you can come over a low hill and see nothing but red lights for miles ahead and pray you stop in time.
Then you pray the semi trucks behind you stop in time. I once had a semi truck screech it's breaks and end up on the shoulder beside me. I was able to lean over and wave at him and thank him for saving my life.
Scott pretty much has the scene set each time we travel to Columbus together this past year - it takes about 23 minutes of driving before I start my diatribe.
"Every county from Cleveland to Columbus - except one - has had to widen their part of 71 - tell me Ashland County is not a poorer county than Morrow. Tell me Medina County did not work night and day to finish their part."
He looks sideways at me and says "It's probably not their fault."
"Someone should be made to pay for the misery Morrow County is inflicting on daily travelers."
He sighs. My statements vary little each week.
"Every statehouse official in Ohio should be made to travel through Morrow County each morning".
I usually tie it all up with my favorite road conditions statement: "Morrow County should be kicked out of the state of Ohio".
Adding insult to injury, in case you don't slow down enough, or have to come to a complete stop in that 25 some mile stretch of interstate, Morrow County closed one lane this past summer. We might have been able to speed up to 27mph for say, over an hour of stop and go traffic.
The reason, you might wonder? Accident? Super drugs bust? Car on fire? No. Morrow County was sandblasting their name into an overpass.
They are proud of their miserable two lanes of unfinished business.
Yeah, get that right: just in case you are angrily sitting in traffic and wonder which part of Ohio has been unable to finish their share of widening 71 to three lanes for say, oh the last decade, they sandblast this answer into an overpass so you all know.
And close a lane of traffic to do it. On both sides.
The first presidential candidate to stand on that overpass and announce to the country that he was willing to make sure some of the billions of dollars of infrastructure repair was going here - this twenty seven miles of misery, full of accidents, peril and usual 37 - 53mph speed limits - the first one to fix that problem would be getting my vote.
But no one has passed this talking point to either candidate it appears.
And just for the record, don't think I haven't noticed that five miles of that wretched parking lot on 71 belongs to you, Delaware County.....
***
Along with wanting to start a petition to kick Morrow County out of the state of Ohio, there's steam coming out of my ears when it comes to health care issues as well.
So far, neither candidate has addressed the issues of insurance coverage completely controlling your health care. If you don't think it is true, step into my classroom sometime - I can school you a little.
There is so much angst going on in the medical field and health insurance companies are certainly fueling a fire that we may not end up having enough water to put out if there are not some huge changes made soon.
There's a lot to talk that I want to hear, but have not heard come out of either candidates mouth - and I have been waiting for it - but if your local doctors office has to sell out to a corporation to be able to afford updated and correct insurance coding software, we are in trouble here folks. When your doctor cannot order a simple complete blood workup without spending twenty minutes on the phone explaining why that is needed to the insurance companies - it changes the way we do healthcare.
And ironically, a simple complete blood workup might have shown my cancer even before a mammogram would have - and I am assuming treating a stage 1 cancer is much cheaper for the insurance company in the long run than treating a stage 3, but we have to walk through the river in haedes just to get a couple of hundred dollars for a blood workup approved.
I have been offering up the vein in my elbow bend the last five years pretty regularly checking thyroid levels - so much so that it was scarred enough to not be of much good use for chemo when I started. And amazingly to me, we couldn't put onto that thyroid testing "she's fatigued still even though her thyroid levels look better - do a complete profile and check her white blood cells and lymphocytes"??? I'm not pointing a finger at the doctors. I'm pointing a finger to all that is over-regulated federally, and over-guided by insurance guidelines.
Remember all those "unnecessary tests" that were the talk of campaigns a decade or more ago?
I could have used one of those last year.
I for one, do not want politicians and someone sitting behind a desk at an insurance company determining what is unnecessary for my healthcare. That's why I go to a certified doctor.
And I have to say, our insurance company has been pretty good about the whole thing after a diagnosis is reached. It's the before - the months of not feeling good, knowing something is wrong, and the running of test after test to find out what might be happening - that's the scary part, and the part that could leave you hurting more.
I for one, have become a great fan of "unnecessary tests", thank you.
***
Scott says he can always tell I am feeling better when I start to complain about my port again. It's very close to the skin, palpable, and is usually blue. The thread that goes into my jugular bugs me when I sleep. It wasn't very well placed - if I wear a bra, the strap sits directly over it, making it very irritated.
I haven't felt better enough to complain about it yet this past week, but along with Morrow County, it's a sure sign that I am much better than I was just a short eight days ago. In fact, this past week has been incredibly better than all the weeks of chemo since September 7, put together.
I suspect someone was fasting and praying for me.
Our House Church has been going through a series of looking at individual words that are commands. Such as "pray", "love", "bless", etc. I have been following it at afar, as the house pastors send out homework assignments.
The current word to look up in the original Hebrew, then Greek, then whatever other tags might be put onto it to encourage you to look at it in a light you may not have seen it in before, but this weeks' word is "fast".
I know from the first two rounds of this chemo and the misery of the first five days of dealing with nuclear-medicine-chemo-fallout, then days 7-14 of those first two rounds handed me pretty miserable infections when my blood work dipped it's lowest - I knew then that it was not going to be an easier chemo like I had hoped. When I kind of crawled out of bed and had a few good days, then went right back for the next chemo round, I was just hoping to not be doing my personal best time here, I was hoping to just stay in the race. Just get across the finish line.
I had the Neulasta Injection the first two rounds as well as this past one, my third round, so I am familiar with its capabilities. My original hope that it would "bounce" me back better and faster, were greatly diminished with the first two rounds under my belt.
But I woke up Monday morning feeling notably better. So much better that on Tuesday morning I cleaned off our desk that was like a two day job. So much better that Thursday, I straightened up the basement after some storm damage and then got into a full blown clean out on the clothing rack that's our "rotation" rack. (Don't be too impressed - it's not done yet...)
I haven't felt like that with chemo since I started the first part of January. Granted, I am taking a lot of breaks, and resting much when climbing stairs to be kind to my heart, but I have been amazed.
And I cannot get over the idea that someone(s) fasted and prayed for me. I don't know who, but I know that after the most miserable chemo week-plus ever, Scott prayed over me on Sabbath, and I still had a lot of fallout to deal with on Sunday, but Monday - was like a different Karen woke up.
I called Scott at school and told him "I've never stepped out of a worse chemo feeling this much better".
I feel God impressing on me, that many were praying, and He heard. Those days after my last chemo - especially days 4 and 5, I just laid in bed and kept repeating a Psalm I have been trying to memorize: "Be merciful to me oh God, be merciful to me, for in you my soul takes refuge In the shadow of your wings I will take refuge until the storms of destruction pass by". Psalm 57:1.
Mostly all my lips kept murmuring out loud were, "be merciful to me oh God, be merciful to me"....
When I first made my trip to Columbus way back on January 4th, my nurse friend framed some terminology and questions for me after talking to some of her doctor friends to prepare me for my first visits. One of her paraphrases was "ask them *this*" or said another way "how high of a window will I want to jump out of after this treatment?"
I thought about that a lot last week, and if I could have found an elevator to crawl onto Day 4, I'm not sure how much I would have wavered on the 113th floor window......
But Day 11 - suddenly my body turned to the better. It might have been because Scott and I had a long talk about stepping back up to our "A-game" - hand sanitizer all the time again, no fresh fruits or vegetables again, using paper-towels in the kitchen instead of dish towels - our basic germ warfare that we had implemented in my first six months of chemo.
It might have been because I was kindly reminded to get back totally on my alkaline diet by a friend's comment on facebook. Your brain doesn't work so well on chemo, and little reminders help. And it has helped - I am back on the alkaline wagon, saving my acids to eat at night only.
It might have been that those acids that I saved for evening, were some pretty darned good baked goods by one of Scott's teacher friends. He mentioned to her that I had said that a pumpkin roll sounded so good.
She sent one home with him two days later - and it was wonderful. I had not been eating many fats nor carbs and my body just seemed to latch onto that wonderful slab of pumpkin goodness.
She sent home pieces of apple cake, and a little bit of peanut butter fudge. And I truly believe my body was needing those bits of fat and carbs to start rolling again.
It could have been all that making me feel better, but as I said, I have not felt this much better after a chemo treatment ever. They tell me my bone marrow has been damaged in my past and that has much to do with my recovery aptitude.
So honestly, I don't expect much. I set my sights on getting through this, I have been given good opportunity to do everything I need to do to get better, and that is what I concentrate on. I don't expect to feel like Mary Poppins floating down on her umbrella. I'm not expecting to burst out into song. I'm just setting my eyes forward, and plodding through, wanting to do every thing I can to cross that finish line.
And then, surprise, surprise, I am given a week of "bonus". And the voice that cannot sing well, has sung a song of praise to my Creator. And the brain that was not very clear, is thinking enough to memorize seven more verses. And the body that was barely able to move a few short days before, is energized and strengthened beyond expectations.
I have not been able to bounce back like that after chemo *ever*. I didn't feel "strength" come back to me until seven weeks out from Taxal and Carbo and Ro - and that was with a surgery thrown in that time frame. I felt better three weeks after surgery than I did three weeks after chemo.
So this all together to tell you, I feel like the breath of God was breathed anew into me, and I believe it was more than earthly actions alone.
So God bless those that run marathons and remind me to stay in the race no matter what; God bless those that bake and bless you with their goodness; God bless my husband for stepping up our germ-warfare-game-plan, keeping me in a germ-free bubble that we hate, but are willing to endure to get to where we need to be.
But most of all, God bless the fast-ers and pray-ers. You have blessed me beyond what you may ever know.
***
I go back Friday for what could be my last chemo treatment ever, hopefully, and just the thought of it makes the acid button in my stomach pump. I am not looking forward to the fourteen days after that chemo. I don't want to have the "chemo-mouth" - the mouth sores and the saliva in your mouth feeling like a metallic-maalox ick for up to five days or more. The inability to taste, but the hyper-ability to smell everything you do not want to inhale. The "long-goodbye" the chemo leaving your body produces in your gastro track. The extreme weakness. The side effects of the anti-nausea drugs that convert your brain into a quivering mass of hopelessness.
I don't look forward to any of that, but it keeps me so humble. I get so irritated at stupid things like roads, and politicians, and insurance companies -- and chemo of all things - poison poured into my body - humbles me and reminds me that I need others praying for me, I need loved ones looking after me, I need friends to encourage me and nourish me and lift me up when my legs don't even want to walk.
It reminds me how close any of us could be to the brink of mental illness, and how we need to uphold and support those that struggle with drug side-effects not just for a week or so, but on a continuing basis for life.
It reminds me of how my soul must look at times with accumulated sin stacked up in it, and I can almost visibly see it and realize my depravity and my need for a Savior and God's cleansing power.
It makes me wonder how big God really is. If I can take quotes that wonderful people send me to remind me that there is a world out there that is caring and kind, but if I read those quotes from different religions, different perspectives, different cultures and still feel my soul connect that quote to me to God - how can that be?
God has set about me a community of caring people that have literally lifted me out of my bed of suffering this past week - and as a bonus - I had hugs from a group of people that almost made me cry in front of them - really, what is this all about? Roads? Politicians?
I don't think my journey of seeking God is over by a long-shot.
In Morrow County, specifically.
I have traveled 71 quite a bit the past five plus years and more, and have flipped my brain in many different directions trying to understand why, why, why! Morrow County has not had to finish their widening project. You can be cruising along at 76 miles per hour, and suddenly there is a mad dash by three lanes of loaded traffic merging into two lanes at the Morrow County line. It slows considerably depending on the time of day, and many times after a bit of two-laning it, you can come over a low hill and see nothing but red lights for miles ahead and pray you stop in time.
Then you pray the semi trucks behind you stop in time. I once had a semi truck screech it's breaks and end up on the shoulder beside me. I was able to lean over and wave at him and thank him for saving my life.
Scott pretty much has the scene set each time we travel to Columbus together this past year - it takes about 23 minutes of driving before I start my diatribe.
"Every county from Cleveland to Columbus - except one - has had to widen their part of 71 - tell me Ashland County is not a poorer county than Morrow. Tell me Medina County did not work night and day to finish their part."
He looks sideways at me and says "It's probably not their fault."
"Someone should be made to pay for the misery Morrow County is inflicting on daily travelers."
He sighs. My statements vary little each week.
"Every statehouse official in Ohio should be made to travel through Morrow County each morning".
I usually tie it all up with my favorite road conditions statement: "Morrow County should be kicked out of the state of Ohio".
Adding insult to injury, in case you don't slow down enough, or have to come to a complete stop in that 25 some mile stretch of interstate, Morrow County closed one lane this past summer. We might have been able to speed up to 27mph for say, over an hour of stop and go traffic.
The reason, you might wonder? Accident? Super drugs bust? Car on fire? No. Morrow County was sandblasting their name into an overpass.
They are proud of their miserable two lanes of unfinished business.
Yeah, get that right: just in case you are angrily sitting in traffic and wonder which part of Ohio has been unable to finish their share of widening 71 to three lanes for say, oh the last decade, they sandblast this answer into an overpass so you all know.
And close a lane of traffic to do it. On both sides.
The first presidential candidate to stand on that overpass and announce to the country that he was willing to make sure some of the billions of dollars of infrastructure repair was going here - this twenty seven miles of misery, full of accidents, peril and usual 37 - 53mph speed limits - the first one to fix that problem would be getting my vote.
But no one has passed this talking point to either candidate it appears.
And just for the record, don't think I haven't noticed that five miles of that wretched parking lot on 71 belongs to you, Delaware County.....
***
Along with wanting to start a petition to kick Morrow County out of the state of Ohio, there's steam coming out of my ears when it comes to health care issues as well.
So far, neither candidate has addressed the issues of insurance coverage completely controlling your health care. If you don't think it is true, step into my classroom sometime - I can school you a little.
There is so much angst going on in the medical field and health insurance companies are certainly fueling a fire that we may not end up having enough water to put out if there are not some huge changes made soon.
There's a lot to talk that I want to hear, but have not heard come out of either candidates mouth - and I have been waiting for it - but if your local doctors office has to sell out to a corporation to be able to afford updated and correct insurance coding software, we are in trouble here folks. When your doctor cannot order a simple complete blood workup without spending twenty minutes on the phone explaining why that is needed to the insurance companies - it changes the way we do healthcare.
And ironically, a simple complete blood workup might have shown my cancer even before a mammogram would have - and I am assuming treating a stage 1 cancer is much cheaper for the insurance company in the long run than treating a stage 3, but we have to walk through the river in haedes just to get a couple of hundred dollars for a blood workup approved.
I have been offering up the vein in my elbow bend the last five years pretty regularly checking thyroid levels - so much so that it was scarred enough to not be of much good use for chemo when I started. And amazingly to me, we couldn't put onto that thyroid testing "she's fatigued still even though her thyroid levels look better - do a complete profile and check her white blood cells and lymphocytes"??? I'm not pointing a finger at the doctors. I'm pointing a finger to all that is over-regulated federally, and over-guided by insurance guidelines.
Remember all those "unnecessary tests" that were the talk of campaigns a decade or more ago?
I could have used one of those last year.
I for one, do not want politicians and someone sitting behind a desk at an insurance company determining what is unnecessary for my healthcare. That's why I go to a certified doctor.
And I have to say, our insurance company has been pretty good about the whole thing after a diagnosis is reached. It's the before - the months of not feeling good, knowing something is wrong, and the running of test after test to find out what might be happening - that's the scary part, and the part that could leave you hurting more.
I for one, have become a great fan of "unnecessary tests", thank you.
***
Scott says he can always tell I am feeling better when I start to complain about my port again. It's very close to the skin, palpable, and is usually blue. The thread that goes into my jugular bugs me when I sleep. It wasn't very well placed - if I wear a bra, the strap sits directly over it, making it very irritated.
I haven't felt better enough to complain about it yet this past week, but along with Morrow County, it's a sure sign that I am much better than I was just a short eight days ago. In fact, this past week has been incredibly better than all the weeks of chemo since September 7, put together.
I suspect someone was fasting and praying for me.
Our House Church has been going through a series of looking at individual words that are commands. Such as "pray", "love", "bless", etc. I have been following it at afar, as the house pastors send out homework assignments.
The current word to look up in the original Hebrew, then Greek, then whatever other tags might be put onto it to encourage you to look at it in a light you may not have seen it in before, but this weeks' word is "fast".
I know from the first two rounds of this chemo and the misery of the first five days of dealing with nuclear-medicine-chemo-fallout, then days 7-14 of those first two rounds handed me pretty miserable infections when my blood work dipped it's lowest - I knew then that it was not going to be an easier chemo like I had hoped. When I kind of crawled out of bed and had a few good days, then went right back for the next chemo round, I was just hoping to not be doing my personal best time here, I was hoping to just stay in the race. Just get across the finish line.
I had the Neulasta Injection the first two rounds as well as this past one, my third round, so I am familiar with its capabilities. My original hope that it would "bounce" me back better and faster, were greatly diminished with the first two rounds under my belt.
But I woke up Monday morning feeling notably better. So much better that on Tuesday morning I cleaned off our desk that was like a two day job. So much better that Thursday, I straightened up the basement after some storm damage and then got into a full blown clean out on the clothing rack that's our "rotation" rack. (Don't be too impressed - it's not done yet...)
I haven't felt like that with chemo since I started the first part of January. Granted, I am taking a lot of breaks, and resting much when climbing stairs to be kind to my heart, but I have been amazed.
And I cannot get over the idea that someone(s) fasted and prayed for me. I don't know who, but I know that after the most miserable chemo week-plus ever, Scott prayed over me on Sabbath, and I still had a lot of fallout to deal with on Sunday, but Monday - was like a different Karen woke up.
I called Scott at school and told him "I've never stepped out of a worse chemo feeling this much better".
I feel God impressing on me, that many were praying, and He heard. Those days after my last chemo - especially days 4 and 5, I just laid in bed and kept repeating a Psalm I have been trying to memorize: "Be merciful to me oh God, be merciful to me, for in you my soul takes refuge In the shadow of your wings I will take refuge until the storms of destruction pass by". Psalm 57:1.
Mostly all my lips kept murmuring out loud were, "be merciful to me oh God, be merciful to me"....
When I first made my trip to Columbus way back on January 4th, my nurse friend framed some terminology and questions for me after talking to some of her doctor friends to prepare me for my first visits. One of her paraphrases was "ask them *this*" or said another way "how high of a window will I want to jump out of after this treatment?"
I thought about that a lot last week, and if I could have found an elevator to crawl onto Day 4, I'm not sure how much I would have wavered on the 113th floor window......
But Day 11 - suddenly my body turned to the better. It might have been because Scott and I had a long talk about stepping back up to our "A-game" - hand sanitizer all the time again, no fresh fruits or vegetables again, using paper-towels in the kitchen instead of dish towels - our basic germ warfare that we had implemented in my first six months of chemo.
It might have been because I was kindly reminded to get back totally on my alkaline diet by a friend's comment on facebook. Your brain doesn't work so well on chemo, and little reminders help. And it has helped - I am back on the alkaline wagon, saving my acids to eat at night only.
It might have been that those acids that I saved for evening, were some pretty darned good baked goods by one of Scott's teacher friends. He mentioned to her that I had said that a pumpkin roll sounded so good.
She sent one home with him two days later - and it was wonderful. I had not been eating many fats nor carbs and my body just seemed to latch onto that wonderful slab of pumpkin goodness.
She sent home pieces of apple cake, and a little bit of peanut butter fudge. And I truly believe my body was needing those bits of fat and carbs to start rolling again.
It could have been all that making me feel better, but as I said, I have not felt this much better after a chemo treatment ever. They tell me my bone marrow has been damaged in my past and that has much to do with my recovery aptitude.
So honestly, I don't expect much. I set my sights on getting through this, I have been given good opportunity to do everything I need to do to get better, and that is what I concentrate on. I don't expect to feel like Mary Poppins floating down on her umbrella. I'm not expecting to burst out into song. I'm just setting my eyes forward, and plodding through, wanting to do every thing I can to cross that finish line.
And then, surprise, surprise, I am given a week of "bonus". And the voice that cannot sing well, has sung a song of praise to my Creator. And the brain that was not very clear, is thinking enough to memorize seven more verses. And the body that was barely able to move a few short days before, is energized and strengthened beyond expectations.
I have not been able to bounce back like that after chemo *ever*. I didn't feel "strength" come back to me until seven weeks out from Taxal and Carbo and Ro - and that was with a surgery thrown in that time frame. I felt better three weeks after surgery than I did three weeks after chemo.
So this all together to tell you, I feel like the breath of God was breathed anew into me, and I believe it was more than earthly actions alone.
So God bless those that run marathons and remind me to stay in the race no matter what; God bless those that bake and bless you with their goodness; God bless my husband for stepping up our germ-warfare-game-plan, keeping me in a germ-free bubble that we hate, but are willing to endure to get to where we need to be.
But most of all, God bless the fast-ers and pray-ers. You have blessed me beyond what you may ever know.
***
I go back Friday for what could be my last chemo treatment ever, hopefully, and just the thought of it makes the acid button in my stomach pump. I am not looking forward to the fourteen days after that chemo. I don't want to have the "chemo-mouth" - the mouth sores and the saliva in your mouth feeling like a metallic-maalox ick for up to five days or more. The inability to taste, but the hyper-ability to smell everything you do not want to inhale. The "long-goodbye" the chemo leaving your body produces in your gastro track. The extreme weakness. The side effects of the anti-nausea drugs that convert your brain into a quivering mass of hopelessness.
I don't look forward to any of that, but it keeps me so humble. I get so irritated at stupid things like roads, and politicians, and insurance companies -- and chemo of all things - poison poured into my body - humbles me and reminds me that I need others praying for me, I need loved ones looking after me, I need friends to encourage me and nourish me and lift me up when my legs don't even want to walk.
It reminds me how close any of us could be to the brink of mental illness, and how we need to uphold and support those that struggle with drug side-effects not just for a week or so, but on a continuing basis for life.
It reminds me of how my soul must look at times with accumulated sin stacked up in it, and I can almost visibly see it and realize my depravity and my need for a Savior and God's cleansing power.
It makes me wonder how big God really is. If I can take quotes that wonderful people send me to remind me that there is a world out there that is caring and kind, but if I read those quotes from different religions, different perspectives, different cultures and still feel my soul connect that quote to me to God - how can that be?
God has set about me a community of caring people that have literally lifted me out of my bed of suffering this past week - and as a bonus - I had hugs from a group of people that almost made me cry in front of them - really, what is this all about? Roads? Politicians?
I don't think my journey of seeking God is over by a long-shot.
Monday, October 29, 2012
"nice teeth"
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.
(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.
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.
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