Some folks have told me that they are having technical difficulties trying to leave comments on my blog. I am not sure if you have to have a Gmail account or not to leave a comment, but if you do it is easy, quick, and free to set up an account. If anyone else has better information, please let me know.
Your comments mean a lot to me, and help me get through the day. Even if you hate my blog, let me know that too. My sister told me sometimes my entries are too intense, and she can only read small chunks at a time.
I have to say that I write the blog mostly for myself for thereapy, so I have to put down what I am feeling at any given time. I realize some of the entries are a little too "spiritual" for some folks, but I don't make any apology for that. The only point of this adventure is seeing more clearly where I fit into His eternal plan. There is no way I can write a blog about having cancer without including God in every part of the narrative.
Thursday, June 12, 2008
Tuesday, June 10, 2008
Taking a Vacation
Last night I started having chest pains, but thought I would wait and see how I felt in the morning. This morning I still had the pains, and although I don't want to turn into a hypochondriac, I don't want to ignore things either.
Before I came to Tulsa the first time, the cardiologist in Long Beach told me I had excess fluid in my pericardial sac. One of the side effects of the chemo pills I am taking is more fluid around my heart, but the old "the benefits outweigh the risks"chestnut came into play again. My oncologist just warned me to let someone know if I feel like I am having a heart attack (which is difficult when you don't exactly know what that is supposed to feel like.)
Before 9:00 this morning I already had an EKG, a CT scan, a blood draw, and an arterial blood gas (ABG) test. Blood for an ABG test is taken from an artery instead of a vein. Collecting blood from an artery is more painful than collecting it from a vein because the arteries are deeper and are protected by nerves. The nurse wanted to be truthful with me and told me to expect a lot of pain. The Lord knew I was about ready to snap this morning, and so He gave me the gift of not feeling a thing. The technician and nurse were amazed. I was relieved and grateful, but very tired.
I have to admit that today I am really worn out. Today nobody would think I was brave, inspirational, or motivating. Today I just want my sister to get here from Florida as fast as she can and cry with me. I need to laugh and see a movie. I need a vacation from this cancer thing- just for today. Today no chemo pills, no hormone blockers, no anti-nausea pills, no supplements, no physical therapy. It was so easy just to walk away from all of it for just today.
Today I have come to the end of what I can handle. But the good news is my heavenly Father still loves me even if I'm not very brave today. If I didn't know that for an absolute certainty, I would be a basket case today. I can't say Jesus loves me, but I don't trust Him with my life in the same sentence. It would be impossible.
We all have a sadness or disappointment in our life that shakes us to the foundation of our being. Mine just happens to be Stage IV breast cancer which is no greater than the pain you might be struggling with right now. My sincere question is if you don't believe in God, how do you handle it? How do you cope with the sadness or situation that is bigger than you? Sex, alcohol, drugs, food, making money, being a big cheese at work - I think those things will only dull the pain for a while, but not eliminate it. How do you hang on without becoming bitter, depressed, or cynical?
This excerpt from St. Faustina's Diary seems applicable to my blog entry for today:
I do not examine with fear Your plans regarding me; my task is to accept everything from your hand. I do not fear anything although the storm is raging and frightful bolts strike all around me, and then I feel quite alone. Yet my heart senses You, and my trust grows, and I see all Your omnipotence which upholds me. With You, Jesus, I go through life, amid storms and rainbows, with a cry of joy, singing the song of Your mercy. I will not stop singing my song of love until the choir of Angels picks it up...
Today I need the Lord to hold me in His arms and let me just pour out my sadness to Him. I need for Him to hide me in the refuge of His wings.The promises of the 91st Psalm are awesome.
He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.
I will say of the LORD,
"He is my refuge and my fortress, my God, in whom I trust."
Before I came to Tulsa the first time, the cardiologist in Long Beach told me I had excess fluid in my pericardial sac. One of the side effects of the chemo pills I am taking is more fluid around my heart, but the old "the benefits outweigh the risks"chestnut came into play again. My oncologist just warned me to let someone know if I feel like I am having a heart attack (which is difficult when you don't exactly know what that is supposed to feel like.)
Before 9:00 this morning I already had an EKG, a CT scan, a blood draw, and an arterial blood gas (ABG) test. Blood for an ABG test is taken from an artery instead of a vein. Collecting blood from an artery is more painful than collecting it from a vein because the arteries are deeper and are protected by nerves. The nurse wanted to be truthful with me and told me to expect a lot of pain. The Lord knew I was about ready to snap this morning, and so He gave me the gift of not feeling a thing. The technician and nurse were amazed. I was relieved and grateful, but very tired.
I have to admit that today I am really worn out. Today nobody would think I was brave, inspirational, or motivating. Today I just want my sister to get here from Florida as fast as she can and cry with me. I need to laugh and see a movie. I need a vacation from this cancer thing- just for today. Today no chemo pills, no hormone blockers, no anti-nausea pills, no supplements, no physical therapy. It was so easy just to walk away from all of it for just today.
Today I have come to the end of what I can handle. But the good news is my heavenly Father still loves me even if I'm not very brave today. If I didn't know that for an absolute certainty, I would be a basket case today. I can't say Jesus loves me, but I don't trust Him with my life in the same sentence. It would be impossible.
We all have a sadness or disappointment in our life that shakes us to the foundation of our being. Mine just happens to be Stage IV breast cancer which is no greater than the pain you might be struggling with right now. My sincere question is if you don't believe in God, how do you handle it? How do you cope with the sadness or situation that is bigger than you? Sex, alcohol, drugs, food, making money, being a big cheese at work - I think those things will only dull the pain for a while, but not eliminate it. How do you hang on without becoming bitter, depressed, or cynical?
This excerpt from St. Faustina's Diary seems applicable to my blog entry for today:
I do not examine with fear Your plans regarding me; my task is to accept everything from your hand. I do not fear anything although the storm is raging and frightful bolts strike all around me, and then I feel quite alone. Yet my heart senses You, and my trust grows, and I see all Your omnipotence which upholds me. With You, Jesus, I go through life, amid storms and rainbows, with a cry of joy, singing the song of Your mercy. I will not stop singing my song of love until the choir of Angels picks it up...
Today I need the Lord to hold me in His arms and let me just pour out my sadness to Him. I need for Him to hide me in the refuge of His wings.The promises of the 91st Psalm are awesome.
He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.
I will say of the LORD,
"He is my refuge and my fortress, my God, in whom I trust."
Surely he will save you from the fowler's snare and from the deadly pestilence.
He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.
You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday.
A thousand may fall at your side, ten thousand at your right hand, but it will not come near you.
You will only observe with your eyes and see the punishment of the wicked.
If you make the Most High your dwelling - even the LORD, who is my refuge- then no harm will befall you, no disaster will come near your tent.
For he will command his angels concerning you to guard you in all your ways;
they will lift you up in their hands, so that you will not strike your foot against a stone.
You will tread upon the lion and the cobra; you will trample the great lion and the serpent.
"Because he loves me," says the LORD, "I will rescue him; I will protect him, for he acknowledges my name.
He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.
With long life will I satisfy him and show him my salvation."
You will only observe with your eyes and see the punishment of the wicked.
If you make the Most High your dwelling - even the LORD, who is my refuge- then no harm will befall you, no disaster will come near your tent.
For he will command his angels concerning you to guard you in all your ways;
they will lift you up in their hands, so that you will not strike your foot against a stone.
You will tread upon the lion and the cobra; you will trample the great lion and the serpent.
"Because he loves me," says the LORD, "I will rescue him; I will protect him, for he acknowledges my name.
He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.
With long life will I satisfy him and show him my salvation."
Monday, June 9, 2008
Cotton Scarves
My second week of radiation on my hip started yesterday, and I am doing very well. I can tell my hip socket doesn't hurt as much, and I am praying that with the radiation and chemo, the bone cancer won't spread to any other locations.
The chemo treatment for me is all in pill form instead of IV infusion which is much more convenient than having to stay in Tulsa. I have to admit that I put off taking the chemo pills for as long as I could because of the possible side effects. So far the supplements that the naturopathic doctor has given me seem to have reduced the these side effects. There is a naturopathic type of lollipop called "Queasy Pops" that comes in nine delicious flavors including green tea and ginger. It's amazing how well it works.
I have been tying a bath towel around my head to see how I will look in a scarf. The glasses are kind of funky, but I think the shape of my head is OK. I heard that the reason you should wear a cotton scarf, is because when you are bald, the scarf won't slide around as much. The fabric is also more "breathable" which keeps your head cooler.
The chemo treatment for me is all in pill form instead of IV infusion which is much more convenient than having to stay in Tulsa. I have to admit that I put off taking the chemo pills for as long as I could because of the possible side effects. So far the supplements that the naturopathic doctor has given me seem to have reduced the these side effects. There is a naturopathic type of lollipop called "Queasy Pops" that comes in nine delicious flavors including green tea and ginger. It's amazing how well it works.
I have been tying a bath towel around my head to see how I will look in a scarf. The glasses are kind of funky, but I think the shape of my head is OK. I heard that the reason you should wear a cotton scarf, is because when you are bald, the scarf won't slide around as much. The fabric is also more "breathable" which keeps your head cooler.
Friday, June 6, 2008
Code Black
The weather in Tulsa has been weird since I got here. I expected the humidity, but not the constant blowing of the wind. I haven't gone outside very much during the day because it's like sitting in a furnace.
Thursday night I was deep in sleep and from far away I heard,"Code Black - everyone immediately move away from the windows and evacuate to the bottom floor." I thought I was dreaming and turned over to go back to sleep. A few seconds later the alert was repeated, and I heard footsteps scurrying down the hall. Whatever this was, it was for real.
CTCA staff were pounding on our doors, making sure we were evacuating our rooms. A tornado was headed our way. I threw on some clothes, stuck my room key in my pocket, and grabbed my cane. I had never been in a tornado before. All I could think of was the beginning scene in the "Wizard of Oz" when Dorothy and her family went into the underground shelter. (Yes, I know this is Oklahoma, not Kansas.) So now there are tons of medicated patients hobbling or being wheeled towards the elevator to take cover downstairs in the hallway. Some people even had their tiny dogs - I didn't know you could bring pets to a hospital.
Growing up in Flordia, I am familiar with hurricane warnings, but you have much more time to get ready. With a tornado warning you have to move fast. But the CTCA staff was prepared. In a matter of fifteen minutes we all had chairs, coffee, water, bananas, and crackers.
I really truly like the middle America folks that make up the majority of the patients staying at the center. Without exception all of the people I have met here are are genuinely kind, not sarcastic, and sincere. I know you can't stereotype people, but Tulsa is not LA. It's a very different vibe. So when I heard this sweet gray-haired patient say she needed a drink, my head snapped up. "I wonder when they are going to pass out the water. I'm parched,"she said.
I was most upset that I had left my prescriptions meds in my room. I didn't care if everything else blew away, but the meds are too expensive to replace. Luckily, the tornado missed us, but if we have another warning I'll be prepared.
We had hail this afternoon, and the skys still look ominous. I am keeping the tv turned on just in case we have another drill tonight.
Thursday night I was deep in sleep and from far away I heard,"Code Black - everyone immediately move away from the windows and evacuate to the bottom floor." I thought I was dreaming and turned over to go back to sleep. A few seconds later the alert was repeated, and I heard footsteps scurrying down the hall. Whatever this was, it was for real.
CTCA staff were pounding on our doors, making sure we were evacuating our rooms. A tornado was headed our way. I threw on some clothes, stuck my room key in my pocket, and grabbed my cane. I had never been in a tornado before. All I could think of was the beginning scene in the "Wizard of Oz" when Dorothy and her family went into the underground shelter. (Yes, I know this is Oklahoma, not Kansas.) So now there are tons of medicated patients hobbling or being wheeled towards the elevator to take cover downstairs in the hallway. Some people even had their tiny dogs - I didn't know you could bring pets to a hospital.
Growing up in Flordia, I am familiar with hurricane warnings, but you have much more time to get ready. With a tornado warning you have to move fast. But the CTCA staff was prepared. In a matter of fifteen minutes we all had chairs, coffee, water, bananas, and crackers.
I really truly like the middle America folks that make up the majority of the patients staying at the center. Without exception all of the people I have met here are are genuinely kind, not sarcastic, and sincere. I know you can't stereotype people, but Tulsa is not LA. It's a very different vibe. So when I heard this sweet gray-haired patient say she needed a drink, my head snapped up. "I wonder when they are going to pass out the water. I'm parched,"she said.
I was most upset that I had left my prescriptions meds in my room. I didn't care if everything else blew away, but the meds are too expensive to replace. Luckily, the tornado missed us, but if we have another warning I'll be prepared.
We had hail this afternoon, and the skys still look ominous. I am keeping the tv turned on just in case we have another drill tonight.
Wednesday, June 4, 2008
God's Sense of Humor
My radiation treatments are going well and I think my hip is already getting stronger. I couldn't start my Xeloda chemo pills this morning as planned because you have to take them on a full stomach, and I haven't been able to eat in two days. I wasn't even able to look at my protein smoothie this morning. Then there was "miscommunication" between one of the clinics here at the CTCA and the one in LA. Then I started feeling sorry for myself because I am here all alone (by my choice). By the time my radiation treatment was over I had worked myself up into such a state that I just wanted to go to the chapel and be by myself to have a good cry.
When I got to the chapel, another lady and the chaplain were already there having a discussion and asked me to join them. The topic they were discussing was trusting in God. The Lord has such a great sense of humor. He had just been waiting for me to show up for this discussion. He wanted to make sure that I realized that He knew how my day was going and He was there with me to help me through. I am so in awe of His timing.
I still cried when I was alone in the chapel, but for a different reason. I cried for my lack of faith.
Of course I would love everything to go back to normal. I would love to be able to wear my flip flops without tripping. I would love to be able to do step box arobics again. I would love to experience spontaneous remission. I would love to throw away all my pills. But more importantly I would love to have the faith of Abraham that would unquestionly accept whatever the day brings because I know that God loves me. I am not there yet, but at least I know what the goal is. I know that there will be days, like today, when I will miss the mark.
But those who wait for the Lord [who expect, look for, and hope in Him] shall change and renew their strength and power; they shall lift their wings and mount up [close to God] as eagles [mount up to the sun]; they shall run and not be weary, they shall walk and not faint or become tired. (Hebrews 40:31)
When I got to the chapel, another lady and the chaplain were already there having a discussion and asked me to join them. The topic they were discussing was trusting in God. The Lord has such a great sense of humor. He had just been waiting for me to show up for this discussion. He wanted to make sure that I realized that He knew how my day was going and He was there with me to help me through. I am so in awe of His timing.
I still cried when I was alone in the chapel, but for a different reason. I cried for my lack of faith.
Of course I would love everything to go back to normal. I would love to be able to wear my flip flops without tripping. I would love to be able to do step box arobics again. I would love to experience spontaneous remission. I would love to throw away all my pills. But more importantly I would love to have the faith of Abraham that would unquestionly accept whatever the day brings because I know that God loves me. I am not there yet, but at least I know what the goal is. I know that there will be days, like today, when I will miss the mark.
But those who wait for the Lord [who expect, look for, and hope in Him] shall change and renew their strength and power; they shall lift their wings and mount up [close to God] as eagles [mount up to the sun]; they shall run and not be weary, they shall walk and not faint or become tired. (Hebrews 40:31)
Traveling Alone
Since last November most of the things I have done outside of my house have been with a caregiver. But this time when I returned to Tulsa, I decided that I wanted to make the trip back alone. I know that this doesn't seem like a huge deal if you have never have two good feet, but for me it was a major accomplishment to make the 1200 mile trip by myself.
Let me put the situation into perspective. Last year I was able to walk a mile in about 15 minutes; now it takes me about 45 minutes. So I was a little nervous about sprinting through the airport trying to make it to another terminal.
The American Airline staff was excellent. Because I was in a wheelchair, I was allowed to go to the front of the security line. The guy wheeling me around LAX was running people over right and left, and I was holding on tight. (Can you imagine this picture?) I also got to board first with the "children flying alone" which is a another perk. You have to look for the silver linings.
The Dallas/Ft. Worth airport is great for people with mobility problems. They have electric trams going up and down the different terminals, so it's easy to catch a ride. Unfortunately, I missed my connecting flight, and by the time I arrived in Dallas the trams had shut down for the night. The poor attendent had to push me in a wheel chair for what seemed liked ten miles. He wasn't in the best of shape, and I was more worried for him than I was about my getting to the departure gate.
I have to say that I was kind of proud of myself for getting to Tulsa without any major problems. My sister will be here next week, and I am looking forward to her company. I am also looking forward to her helping me through the cafeteria line. It's really tricky trying to balance a full tray and manage a cane at the same time.
Let me put the situation into perspective. Last year I was able to walk a mile in about 15 minutes; now it takes me about 45 minutes. So I was a little nervous about sprinting through the airport trying to make it to another terminal.
The American Airline staff was excellent. Because I was in a wheelchair, I was allowed to go to the front of the security line. The guy wheeling me around LAX was running people over right and left, and I was holding on tight. (Can you imagine this picture?) I also got to board first with the "children flying alone" which is a another perk. You have to look for the silver linings.
The Dallas/Ft. Worth airport is great for people with mobility problems. They have electric trams going up and down the different terminals, so it's easy to catch a ride. Unfortunately, I missed my connecting flight, and by the time I arrived in Dallas the trams had shut down for the night. The poor attendent had to push me in a wheel chair for what seemed liked ten miles. He wasn't in the best of shape, and I was more worried for him than I was about my getting to the departure gate.
I have to say that I was kind of proud of myself for getting to Tulsa without any major problems. My sister will be here next week, and I am looking forward to her company. I am also looking forward to her helping me through the cafeteria line. It's really tricky trying to balance a full tray and manage a cane at the same time.
Tuesday, June 3, 2008
Turning Myself In
Last Friday I finally "turned myself in" to the DMV. When people have a brain trauma, their doctor is supposed to inform the DMV who in turn suspends their driver's license. For some reason my license was never suspended, so technically it is still legal for me to drive. However, if I am involved in an accident (even if it the accident isn't my fault), my family could be sued and our insurance company wouldn't have to pay for any damages. So the only way to get the ball rolling for re-evaluation ask for my own license to be suspended.
Now within 3 to 6 weeks the DMV will notify me that they have suspended my license and send me a five page medical form that has to be completed by my neurologist. The neurologist might require that I first take an OT evaluation before he will sign the form. This OT evaluation costs $400 which is not covered by insurance.
Once I take the OT evaluation and have the signed medical form, I can have a hearing with a judge. The judge will then decide if I can be reevaluated by the DMV. If the judge says "yes,"I can make an appointment with the DMV. The DMV must decide if I have to take the written and driving exam. You would be amazed at the large number of people with brain issues that never bother to go through this procedure are still driving- isn't that a comforting thought?
If I pass the driver's test, I'm back behind the wheel.
Now within 3 to 6 weeks the DMV will notify me that they have suspended my license and send me a five page medical form that has to be completed by my neurologist. The neurologist might require that I first take an OT evaluation before he will sign the form. This OT evaluation costs $400 which is not covered by insurance.
Once I take the OT evaluation and have the signed medical form, I can have a hearing with a judge. The judge will then decide if I can be reevaluated by the DMV. If the judge says "yes,"I can make an appointment with the DMV. The DMV must decide if I have to take the written and driving exam. You would be amazed at the large number of people with brain issues that never bother to go through this procedure are still driving- isn't that a comforting thought?
If I pass the driver's test, I'm back behind the wheel.
Subscribe to:
Posts (Atom)