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.
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