Friday was my last day at CTCA. When I had my "exit interview" with oncology, the PA told me my blood results were the best she had seen all week. The radiation to the cancer in my hip socket has been a great success. I have been able to go to half dosage of the pain patch I am wearing and still feel great.
The reason I decided to go 1200 miles for treatment in the first place was because in addition to traditional oncology and radiation, I also see a nutritionist, naturopathic doctor, physical therapist, and a mind/body psychologist. These are considered consultant services and there is NO CHARGE. CTCA has an electronic medical records system which makes it possible for all the various practitioners to view what everyone else is doing and has prescribed. If I tried to get the same level of care in Long Beach/Los Angeles, I would go crazy just trying to coordinate all my medical team and the cost for the consultant services would be out of pocket.
The ND (doctor of naturopathy) has been one of the most valuable members of my team. Right now my biggest problem is nausea. My oncologist prescribed the traditional meds, but the ND also suggested simply trying ginger (did you know there is no ginger in gingerale?). For the past few days I have stopped taking the Kytril and Compezine and substituted the ginger chews. This natural substitution has worked perfectly and allows me to decrease the amount of toxins I am ingesting. I have been taking large doses of vitamin B-12 to decrease the chemo side effects. My oncologist is amazed that to date I don't have the usual sores on my hands and feet that almost everyone gets from using Xeloda. It is so cool that the oncologists and radiologists at CTCA actually work in conjunction with the NDs and nutritionists instead of fighting with them! My ND, who used to practice in California, recommended an acupuncturist in Santa Monica. He told me that studies have shown that acupuncture can greatly eliminate the side effects of both chemo and radiation. It's certainly worth investigating.
From my mind/body psychologist I have learned vizualization, stress relieving, and humor techinques to help me more effectively deal with cancer. The last session we had we spent praying together for a healing of both the cancer and my lack of mobility. Dr. Ellison is definitely a prayer warrior. While he was praying for me, I felt a heat go throughout my body that was a tangible witness to the presence of the Holy Spirit. I have never had that experience with any of of doctors in Long Beach so far.
This is not to say that I received bad medical treatment in California, but I don't think my oncologist knows my name without looking at the top of my chart. He just has too many patients to personally keep track of us all. In fact the last time I went to his office for an infusion, they were going to give me Sue McNeely's meds. He is a very competent physician associated with UCLA, but I doubt seriously if he would stop and pray with me or call on the power of the Holy Spirit to heal my disease. I feel a lot more comfortable with folks that acknowledge that there is a Creator of the Universe that might know a little bit more than they do about cancer.
I am going to try to have some of the more routine oncology procedures done in Long Beach to cut down on the number of trips I have to make to Tulsa. This will be especially important as I hope to return to work soon. The good news is that CTCA is opening a new facility in Phoenix the first of December. This event will make followups a breeze. But it would be very difficult for me to stop going to CTCA because they believe in the "mother standard" - would you want to send your mother there?
Sunday, June 22, 2008
Thursday, June 19, 2008
Gotta Serve Somebody
It is amazing how much my perspective about some things has changed in only seven months. A little more than a year ago I can remember being absolutely devastated because I didn't get the evaluation score at work that I had expected. I felt totally crushed because I let myself be defined by my job. As Bob Dylan says, "Well, it may be the devil or it may be the Lord, but you're gonna have to serve somebody." I was serving myself and my pride. I needed to receive a "3" at work in order to be validated in my own eyes. In a recent peer evaluation one of my co-workers wrote: "Jayne does not understand the concept of having a work/life balance." That comment was completely accurate.
Looking back over this cancer odyssey, I can see that I have had many of my priorities all screwed up. As a Christian I believe that the proper balance in life is God first, then family, then your job. I paid lip service to this concept, but was really a hypocrite. This belief doesn't mean you don't do your best at work. Before the Lord, I am accountable for every hour I am paid by my company to be the best employee I can possibly be. Before the Lord, I have to be the wife and mother He expects me to be. But I can't make my job or my family into false idols. Only God deserves my worship. I know with my head that if God has first place, everything else falls into its correct place - but with my anal personality it is impossible for me to get the order right without His grace.
Oddly enough, one of the recurring comments you hear among cancer patients is, "Cancer is the best thing that could have happened to me. It has forced me to re-evaluate my entire life." I have to agree. I really feel like Ebenezer Scrooge who has been given a second chance to do the right thing. I know I have been given an opportunity to make things right before Christmas comes. Can I choose to blow this chance? It's all about free will, baby, but what a tragedy that would be. What a waste of this awesome experience. How many people get to go through a recurrence of breast cancer that has metastasized to the brain and bones and get to live to tell about it?
If I could model myself after anyone I have ever met, I would want to be just like Sister Santhi, a nursing sister I met while I was a patient at St. Mary's. She would walk into your room and you could just feel the love of Jesus radiating from her face. She didn't have to say a word. She is GENUINELY kind, and that's what I want people to think about me. Maybe I won't be considered the smartest, thinnest (for sure), best dressed, or most-well read person in the room, but if people would just consider me the kindest I would be satisfied. I especially want to be kinder and more patient with my husband and daughter. It's not easy living or working with someone who wants everything to be perfect. With God's help I will learn to let things "slide" more and focus on what's actually important.
While typing today's entry, I have really felt God's presence. I am crying right now -- not from frustration or sadness, but from the appreciation I feel for His giving me a second chance to stop being a jerk; to realize what is REALLY important. We all gotta serve somebody. Whom do you serve?
Looking back over this cancer odyssey, I can see that I have had many of my priorities all screwed up. As a Christian I believe that the proper balance in life is God first, then family, then your job. I paid lip service to this concept, but was really a hypocrite. This belief doesn't mean you don't do your best at work. Before the Lord, I am accountable for every hour I am paid by my company to be the best employee I can possibly be. Before the Lord, I have to be the wife and mother He expects me to be. But I can't make my job or my family into false idols. Only God deserves my worship. I know with my head that if God has first place, everything else falls into its correct place - but with my anal personality it is impossible for me to get the order right without His grace.
Oddly enough, one of the recurring comments you hear among cancer patients is, "Cancer is the best thing that could have happened to me. It has forced me to re-evaluate my entire life." I have to agree. I really feel like Ebenezer Scrooge who has been given a second chance to do the right thing. I know I have been given an opportunity to make things right before Christmas comes. Can I choose to blow this chance? It's all about free will, baby, but what a tragedy that would be. What a waste of this awesome experience. How many people get to go through a recurrence of breast cancer that has metastasized to the brain and bones and get to live to tell about it?
If I could model myself after anyone I have ever met, I would want to be just like Sister Santhi, a nursing sister I met while I was a patient at St. Mary's. She would walk into your room and you could just feel the love of Jesus radiating from her face. She didn't have to say a word. She is GENUINELY kind, and that's what I want people to think about me. Maybe I won't be considered the smartest, thinnest (for sure), best dressed, or most-well read person in the room, but if people would just consider me the kindest I would be satisfied. I especially want to be kinder and more patient with my husband and daughter. It's not easy living or working with someone who wants everything to be perfect. With God's help I will learn to let things "slide" more and focus on what's actually important.
While typing today's entry, I have really felt God's presence. I am crying right now -- not from frustration or sadness, but from the appreciation I feel for His giving me a second chance to stop being a jerk; to realize what is REALLY important. We all gotta serve somebody. Whom do you serve?
Monday, June 16, 2008
Heading into the Home Stretch
I finish my radiation treatments at CTCA on Thursday, but Friday I still have a Zometa IV infusion and then I'm done. The 21 days went fast, but I can't wait to see my family again!
Jude and I had a fun weekend in Tulsa. We saw both Sex and the City (for my sister) and Prince Caspian (for me). We visited a charming antique shopping area and walked around River Walk built on the Arkansas River.
Tulsa is a beautiful city, very clean and green. The price of houses here is astounding by southern California standards. For less than $300,000 you can get a brand new custom-built home, over 2400 square feet, an actual yard, hardwood floors, fireplace, gorgeous kitchen, deck, and fireplace. I told my sister we should have a realtor take us around while we are here. The only downside to Tulsa that I have observed is the weather.
This trip has been a good test of whether or not I am ready go back to work. I have been able to put my stamina and mobility to the test. I vote "Yes" -- at least part time for the first few weeks.
When I was going through my sad day last week, in the evening I went to a Sing-along where we sang contemporary Christian tunes. Diane, one of the singers who prayed with me afterwards, shared with me how her son had been killed in an accident. She also sang to me the song, He Understands My Tears by the Issacs. I encourage you to go to http://www.youtube.com/watch?v=cpizJmVrhKk&feature=related on YouTube to hear the song and the inspiration for its creation. Even if you don't like Christian music, please listen to this song. The words are awsome, and you never know when it might come in handy.
P.S. It never fails that when I think I am at the bottom and can't take anymore, Jesus sends someone along side of me to help me bear my burden. He sends a pair of arms to give you a hug or a shoulder to lay your head on. He works through His people. He is true to His word that He won't give you more than you can handle! Diane, the lady from the Sing-along was that person for me that week. So much kindness has been extended to me over the past six months. I pray that the Lord will give me the opportunity to repay some of what has been given to me to the people I meet along my way.
Jude and I had a fun weekend in Tulsa. We saw both Sex and the City (for my sister) and Prince Caspian (for me). We visited a charming antique shopping area and walked around River Walk built on the Arkansas River.
Tulsa is a beautiful city, very clean and green. The price of houses here is astounding by southern California standards. For less than $300,000 you can get a brand new custom-built home, over 2400 square feet, an actual yard, hardwood floors, fireplace, gorgeous kitchen, deck, and fireplace. I told my sister we should have a realtor take us around while we are here. The only downside to Tulsa that I have observed is the weather.
This trip has been a good test of whether or not I am ready go back to work. I have been able to put my stamina and mobility to the test. I vote "Yes" -- at least part time for the first few weeks.
When I was going through my sad day last week, in the evening I went to a Sing-along where we sang contemporary Christian tunes. Diane, one of the singers who prayed with me afterwards, shared with me how her son had been killed in an accident. She also sang to me the song, He Understands My Tears by the Issacs. I encourage you to go to http://www.youtube.com/watch?v=cpizJmVrhKk&feature=related on YouTube to hear the song and the inspiration for its creation. Even if you don't like Christian music, please listen to this song. The words are awsome, and you never know when it might come in handy.
P.S. It never fails that when I think I am at the bottom and can't take anymore, Jesus sends someone along side of me to help me bear my burden. He sends a pair of arms to give you a hug or a shoulder to lay your head on. He works through His people. He is true to His word that He won't give you more than you can handle! Diane, the lady from the Sing-along was that person for me that week. So much kindness has been extended to me over the past six months. I pray that the Lord will give me the opportunity to repay some of what has been given to me to the people I meet along my way.
Thursday, June 12, 2008
Back on Track
My body must be adjusting to the chemo pills because the nausea is a lot less. I haven't felt very much like eating all week, but the problem is I have to take Xeloda on a full stomach. I was hoping I might lose a few pounds, but that hasn't happened. Isn't it incredible that a person can have breast cancer and still worry about how much they weigh? Just call me vain and shallow.
Anyhow, the one day of vacation did me a world of good and I am back on track taking all my meds and supplements. I only have 4 more radiation treatments on my hip to go - and then back home. I can't wait. This is a great place, but it's still a cancer treatment center.
My sister, Judith, came in Tuesday night, and her being here has made all the difference. I am able to sleep better at night just knowing she in the room. She helps me in the cafeteria balance my food on her tray. Even little things become a big deal. Today we are going to go to the mall and there is a sing-along tonight in the cafeteria. We want to see more of Tulsa before we leave since we are out in the suburbs.
Anyhow, the one day of vacation did me a world of good and I am back on track taking all my meds and supplements. I only have 4 more radiation treatments on my hip to go - and then back home. I can't wait. This is a great place, but it's still a cancer treatment center.
My sister, Judith, came in Tuesday night, and her being here has made all the difference. I am able to sleep better at night just knowing she in the room. She helps me in the cafeteria balance my food on her tray. Even little things become a big deal. Today we are going to go to the mall and there is a sing-along tonight in the cafeteria. We want to see more of Tulsa before we leave since we are out in the suburbs.
Leaving Comments
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.
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.
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.
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