NOTE: not whining, but to say no one can tell what goes on in the body, mind and spirit of another. This is a continuation of the thoughts in "Everyday living".
______________________________________________________________________________
Skin so tight it hurts,
Lotion eases the tight wrinkles snd makeup almost hides the acne.
Blood. From where? The inside edges of my nostrils.
Bleeding.
My skin burns everywhere.
Red bumps and rash are coming everywhere.
It's rough like sandpaper: no lotion is enough.
It itches and itches.
I can't reach my back.
You'd never know if I didn't tell you.
The medicine that will lengthen my life has turned my skin to sandpaper.
I am alone
In this skin.
I awake from a decent night's sleep (unusual).
Aching muscles, aching joints.
Getting out of bed is like trying to swim through pudding.
Before my feet hit the floor, I remember. I have cancer that can't be cured.
Then the cough starts.
Why the cough? Reflux, anatomical changes, who knows? Who cares?
Typhoid Mary: out trying to shop and the damned coughing comes again.
Talking? Try it with vocal folds that have been beaten into what surely must be shreds.....
Coughing that causes the whole body to shudder and shake.
Coughing that wears a body out...only adding to the ever present fatigue...
Oh, Lord sometimes I feel so alone
With this cough and no voice.
I am always tired. Always. No amount of sleep fixes it.
How can anyone who looks so good be so tired? Nahhhhh....
You don't walk in my shoes, so you don't know what tired really is.
Is it any wonder that there are times when I am just sick and tired of being sick and tired?
Lord, I know you're there and you're working in my life.
I believe that all things work together for my good~~
And that I must keep my focus on you.
The psalmist writes that crying and sorrow will last for the night,
And joy comes in the morning.
Hold me tight as I close my eyes and take one step at a time,
And be ready to hold me up when I can't take one more step...
Monday, October 25, 2010
Monday, October 18, 2010
Return to "everyday living"...
The sense of urgency has passed. The shock of being diagnosed with two primary cancers has worn off. I've told the story so many times, I'm numb to it. I'm so used to it, I sometimes forget how shocking my story really is to people hearing it for the first time. In German I would call this "Alltag": everyday living.
I am living with my cancer, or some reasonable facsimile thereof. "Living" is different. There are medications to be taken at certain times on an empty or full stomach, depending. There is the horrifically
dry skin that requires repeated applications of heavy duty lotions.Parts of my body are covered with a hard, itchy rash. Even my nostrils are dry. My hair is fragile...but has become curly. My eyelashes are long and curly, thanks to the Tarceva. So...it gave me acne, the rash, the dry skin, but my eyelashes could get me a gig with Maybelline. I won't go into detail about the quantity of Immodium I ingest on a daily basis.
People say I look "good". I do. There are no outward, blatently obvious changes...short thin hair is nothing new for me. If they hang around with me for a while, they'd hear the wheezy sound of my breathing, my shortness of breath and the constant coughing. They'd hear the hoarsness of my voice caused by the coughing. They might see me steady myself during a dizzy spell. They'd see me looking for a place to sit! I try to conserve my energy for important things. Doing simple things like laundry or unloading the dishwasher are causes for needing to rest and catch my breath.
Yes...it's much better than this summer.What a long way I've come since my surgery...even with the side effects of the new medications...the post-op period is almost like a bad dream at this point. I had the pneumonectomy on June 7th. What I remember most about this summmer is the HEAT. It was mostly in the 90s with very high humidity. Most days I was stuck inside the house in the air conditioning. Taking the dogs out during the day was a scary ordeal. Cell phone in pocket, I'd take them out to the island of grass near the kitchen door for the fastest "business" on record. The dogs didn't like the heat either; they didn't waste any time getting back into the A/C..
During that time I was also taking a lot of pain medications. It's amazing I was functional at all.
Then there are the nights.....insomnia. Insomnia and itching. Insomnia caused by itching....with or without cough. Tonight--I write this not to whine, but to document...to put the night into words so that people might understand.
Today I was tired. Bone tired. I had to force myself to get up, move around, take a shower. The shower was a must because I need the Nioxin stuff for my hair, and I need to exfoliate my skin so that the moisturizers are effective. I use a mild scrub, then go over it again with a super duper moisturizing Dove body wash.
The shower has worn me out. I go to the vanity stool and sit...pondering the disarray on the counter before me. More moisturizer, then sunscreen. No problem; my skin is so dry the sunscreen doesn't make my skin gooey.
I survey my facial skin in the 5x magnification lighted mirror.Since being on the Tarceva and using extra, super duty moisturizers, the wrinkles are greatly diminished. This would be a cause for huge excitement, except for that the Tarceva has also caused three spots of true acne (which I never had as a kid), with a sprinkling of whiteheads for good measure. I believe the correct term is "zits". At the ripe old age of 51 I have produced a bumper crop of zits. Surely there's some kind of award for that!
By the time I've got the rapidly thinning, increasingly curly hair dry, makup on----I am exhausted. I still have to get dressed. By the time I emerge from the bedroom I'm ready for bed....and on days like today, I wonder how I can go on at all.
During this whole time, I have been coughing. If you've read my other posts, you know that this cough is deep, strong...almost violent. It's incapacitating. Talking to someone is incredibly difficult. Practicing the harp or piano--interrupted. There are two significant sequelae: I am hoarse, which also interferes with communication. Second, my chest and abdominal muscles hurt from coughing. The area under my left front ribs which is numb/burning/aching as a result of nerve damage from my pneumonectomy, seems to be especially irritated by the cough.
Finally, the cough just wears me out. On top of everything else, the cough brought me right to the edge of despair today.I felt like plopping myself down in the middle of the aisle at Target and crying.Not one more step, not one more breath.
After this terrible day of exhaustion, you'd think I'd sleep like a baby. No such luck. In spite of the moisturizers, I'm itching. In spite of the Nioxin, my scalp is itching and crawling. My whole body feels like one big itchy mess. At the moment, the cough is there, but less because of the narcotics I took for the side pain. The narcs don't help me to sleep; the itching is too severe.
Benadryl interacts with some of the drugs I'm taking, so that's out as an option to help. So, I got out of bed, came to the couch and computer, armed with my "insomnia" Jelly Bellys to check on Facebook and write here. One by one I pick the jelly beans out of the crystal jelly jar till finally, the jar is empty.
I return to bed relieved to know that it really doesn't matter if I'm exhausted in the morning...no patients to see, nowhere to go....I don't have to function at a high level.
When you are in line at the grocery and the person in line in front of you seems slow, it might be me. Wherever you find yourself among people, remember that their fears, illnesses and struggles may not be visible on the outside.
This is what I love about Christ...love people. Period. Whatever your religion or what your beliefs are, it's never wrong to show grace and kindness to others. I have experienced this so often and it's helped me uncountable times.
So...it goes on.
I am living with my cancer, or some reasonable facsimile thereof. "Living" is different. There are medications to be taken at certain times on an empty or full stomach, depending. There is the horrifically
dry skin that requires repeated applications of heavy duty lotions.Parts of my body are covered with a hard, itchy rash. Even my nostrils are dry. My hair is fragile...but has become curly. My eyelashes are long and curly, thanks to the Tarceva. So...it gave me acne, the rash, the dry skin, but my eyelashes could get me a gig with Maybelline. I won't go into detail about the quantity of Immodium I ingest on a daily basis.
People say I look "good". I do. There are no outward, blatently obvious changes...short thin hair is nothing new for me. If they hang around with me for a while, they'd hear the wheezy sound of my breathing, my shortness of breath and the constant coughing. They'd hear the hoarsness of my voice caused by the coughing. They might see me steady myself during a dizzy spell. They'd see me looking for a place to sit! I try to conserve my energy for important things. Doing simple things like laundry or unloading the dishwasher are causes for needing to rest and catch my breath.
Yes...it's much better than this summer.What a long way I've come since my surgery...even with the side effects of the new medications...the post-op period is almost like a bad dream at this point. I had the pneumonectomy on June 7th. What I remember most about this summmer is the HEAT. It was mostly in the 90s with very high humidity. Most days I was stuck inside the house in the air conditioning. Taking the dogs out during the day was a scary ordeal. Cell phone in pocket, I'd take them out to the island of grass near the kitchen door for the fastest "business" on record. The dogs didn't like the heat either; they didn't waste any time getting back into the A/C..
During that time I was also taking a lot of pain medications. It's amazing I was functional at all.
Then there are the nights.....insomnia. Insomnia and itching. Insomnia caused by itching....with or without cough. Tonight--I write this not to whine, but to document...to put the night into words so that people might understand.
Today I was tired. Bone tired. I had to force myself to get up, move around, take a shower. The shower was a must because I need the Nioxin stuff for my hair, and I need to exfoliate my skin so that the moisturizers are effective. I use a mild scrub, then go over it again with a super duper moisturizing Dove body wash.
The shower has worn me out. I go to the vanity stool and sit...pondering the disarray on the counter before me. More moisturizer, then sunscreen. No problem; my skin is so dry the sunscreen doesn't make my skin gooey.
I survey my facial skin in the 5x magnification lighted mirror.Since being on the Tarceva and using extra, super duty moisturizers, the wrinkles are greatly diminished. This would be a cause for huge excitement, except for that the Tarceva has also caused three spots of true acne (which I never had as a kid), with a sprinkling of whiteheads for good measure. I believe the correct term is "zits". At the ripe old age of 51 I have produced a bumper crop of zits. Surely there's some kind of award for that!
By the time I've got the rapidly thinning, increasingly curly hair dry, makup on----I am exhausted. I still have to get dressed. By the time I emerge from the bedroom I'm ready for bed....and on days like today, I wonder how I can go on at all.
During this whole time, I have been coughing. If you've read my other posts, you know that this cough is deep, strong...almost violent. It's incapacitating. Talking to someone is incredibly difficult. Practicing the harp or piano--interrupted. There are two significant sequelae: I am hoarse, which also interferes with communication. Second, my chest and abdominal muscles hurt from coughing. The area under my left front ribs which is numb/burning/aching as a result of nerve damage from my pneumonectomy, seems to be especially irritated by the cough.
Finally, the cough just wears me out. On top of everything else, the cough brought me right to the edge of despair today.I felt like plopping myself down in the middle of the aisle at Target and crying.Not one more step, not one more breath.
After this terrible day of exhaustion, you'd think I'd sleep like a baby. No such luck. In spite of the moisturizers, I'm itching. In spite of the Nioxin, my scalp is itching and crawling. My whole body feels like one big itchy mess. At the moment, the cough is there, but less because of the narcotics I took for the side pain. The narcs don't help me to sleep; the itching is too severe.
Benadryl interacts with some of the drugs I'm taking, so that's out as an option to help. So, I got out of bed, came to the couch and computer, armed with my "insomnia" Jelly Bellys to check on Facebook and write here. One by one I pick the jelly beans out of the crystal jelly jar till finally, the jar is empty.
I return to bed relieved to know that it really doesn't matter if I'm exhausted in the morning...no patients to see, nowhere to go....I don't have to function at a high level.
When you are in line at the grocery and the person in line in front of you seems slow, it might be me. Wherever you find yourself among people, remember that their fears, illnesses and struggles may not be visible on the outside.
This is what I love about Christ...love people. Period. Whatever your religion or what your beliefs are, it's never wrong to show grace and kindness to others. I have experienced this so often and it's helped me uncountable times.
So...it goes on.
Wednesday, October 6, 2010
Frustration
Tonight I am allowing myself to vent some of my frustrations. I've come to terms with the physical changes for the most part...and certainly don't expect not to have any problems.
If you're going to read this, get some cheese to have along with my whine....
I am sick to death of coughing. Not little ladylike throat clearing...I'm talking about coughing like I'm trying to cough up a leg. My side is so sore from coughing...I have a hard time speaking...I finally just sat down and cried today. Boo hoo cry baby.
Can't play the harp very well when I'm having full body coughing fits. Imagine explaining that kind of cough to patients in the clinic. Doesn't exactly engender confidence in one's patients.
After my surgery, the area where my left lung had been filled up with fluid. This is expected and good. My heart, stomach, trachea and esophagus all shifted to the left. The fluid does not hold them in their original places. My sense is that my symptoms are related to this shift. I have developed terrible reflux...so of course I'm going to cough.
If you're a praying person, please pray with me that the cough would resolve so that I can function. If I'm missing something that I need to pay attention to, I'm listening.
If you're going to read this, get some cheese to have along with my whine....
I am sick to death of coughing. Not little ladylike throat clearing...I'm talking about coughing like I'm trying to cough up a leg. My side is so sore from coughing...I have a hard time speaking...I finally just sat down and cried today. Boo hoo cry baby.
Can't play the harp very well when I'm having full body coughing fits. Imagine explaining that kind of cough to patients in the clinic. Doesn't exactly engender confidence in one's patients.
After my surgery, the area where my left lung had been filled up with fluid. This is expected and good. My heart, stomach, trachea and esophagus all shifted to the left. The fluid does not hold them in their original places. My sense is that my symptoms are related to this shift. I have developed terrible reflux...so of course I'm going to cough.
If you're a praying person, please pray with me that the cough would resolve so that I can function. If I'm missing something that I need to pay attention to, I'm listening.
Friday, October 1, 2010
September gone...
Where did September go? My favorite month. Lots of memories of Septembers past. I loved school, and I loved starting back to school each year. I love the weather: the beginnig of a crispness to the air as the humidity lessens. The first leaves start to fall.
September has not always been kind ~~
My mother died September 10, 1993. Probably the most traumatic event of my life.
Many of my precious Schipperke loves went to the bridge in September:
IvyRose: September 5, 2002. Oso: 9/14/2005. Obi: 9/20/2007. Israel 9/26/2008.
Other years were not so sad:
David and I got married 9/22/2007 and had a wonderful trip to the Outer Banks.
I took and passed my Adult Nurse Practitioner Cerification Exam 9/15/2005.
Earth, Wind & Fire's recording "September" is one of my favorite songs.
I wrote a decent song titled "September".
This year was a good September. The cooler temperatures gave me more time to spend outside with the boys and enjoy my outdoor recliner.
September has not always been kind ~~
My mother died September 10, 1993. Probably the most traumatic event of my life.
Many of my precious Schipperke loves went to the bridge in September:
IvyRose: September 5, 2002. Oso: 9/14/2005. Obi: 9/20/2007. Israel 9/26/2008.
Other years were not so sad:
David and I got married 9/22/2007 and had a wonderful trip to the Outer Banks.
I took and passed my Adult Nurse Practitioner Cerification Exam 9/15/2005.
Earth, Wind & Fire's recording "September" is one of my favorite songs.
I wrote a decent song titled "September".
This year was a good September. The cooler temperatures gave me more time to spend outside with the boys and enjoy my outdoor recliner.
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