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.
Monday, May 19, 2008
The Blessing of the Hands
The day before we left CTCA, I went into the chapel to pray for wisdom about staying in Tulsa for treatment or going home. I just "happened" to come into the chapel during the Blessing of the Hands ceremony. Once a year on May 12, Florence Nightingale's birthday, members of the CTCA medical community have the opportunity to have their hands anointed with oil and prayed over in recognition of their ministry of healing.
During this ceremony, the chaplain prays that the hands of the doctor, nurse, technician, or volunteer will be led by the power of the Holy Spirit to bring comfort, kindness, and medical skill to their patients. Who wouldn't want to be in a cancer center where the people treating you actually want to be led by God while they are treating you?
After observing this Blessing of the Hands ceremony, I felt an absolute peace in my spirit. I knew I had come to the right place for treatment.
During this ceremony, the chaplain prays that the hands of the doctor, nurse, technician, or volunteer will be led by the power of the Holy Spirit to bring comfort, kindness, and medical skill to their patients. Who wouldn't want to be in a cancer center where the people treating you actually want to be led by God while they are treating you?
After observing this Blessing of the Hands ceremony, I felt an absolute peace in my spirit. I knew I had come to the right place for treatment.
Sunday, May 18, 2008
Caregivers
I have always been very independent, and it is much easier for me to give help to other people than to accept help for myself. The past six months have taught me than this attitude has really been a pride issue, and I am now getting a crash course in humility. Humility is not something I am acquiring overnight, and I still struggle everyday.
Since I was diagnosed with the brain tumor my life has been turned upside down. I can't drive anymore. I am not working at my job. I can't work in my garden. I can't do my own housework. I have to stop worrying about the dirty windows. Some days I can do the laundry; other days I can't. I can't carry things upstairs. I can't walk 10,000 steps a day. Many people don't treat me like an adult anymore. These are huge changes to process in such a short amount of time.
I have had to concede that I need caregivers to help me get through this time in my life. In some ways I think it is harder for my caregivers to cope with the cancer than it is for me. The caregivers have to cope with feeling guilty about doing what they have to do to maintain their normal lives and meet other necessary obligations and still have time to worry about me.
For example, my husband still has to keep his job while at the same time has taken on a lot of the household duties and drives me to the endless doctors' appointments I have each week. He is often late for work. He took a week off to go to Tulsa with me when he had a ton of work to finish. I know he worries about meeting deadlines for his job, but doesn't want me to know he is worried. I pray for him daily that he doesn't crack up (or run away from me when he has to put up with my mood swings). He is so strong and makes me feel safe no matter what happens.
My daughter Becca doesn't treat me with kid gloves - and this is important in a caregiver too.
My sister Judith gave up her spring break to hang out with me, and I ended up yelling at her because I still had to prove to her how capable I was of taking care of myself. Luckily, she forgave me and is coming from Florida to stay with me in Tulsa while I have radiation treatments.
My brother David gave me the push I needed to get a second opinion from Cancer Treatment Center of America.
My niece Jordan and nephew Adam came from Florida and helped me through my wheelchair days in the hospital. Their professional expertise, youthful humor, and honesty were exactly what I needed.
My brother-in-law Ian can relate to my disabilities and distrust of the medical community.
From the first minute I knew I had a brain tumor Angela and Velma have been more like daughters to me than friends. At Christmas they came and decorated my hospital room. Their love and kindness has touched me more than they know.
Maria prays for me "without ceasing." In fact the first thing I saw when I got out of surgery was a sticky note on my pillow that said: "Maria called."
My supervisors and friends at CTEC have been fantastic. They all know me from "before," and it is essential for me to know that they still believe in me.
My friends and therapists at TRS have become a second family to me. Not only did they help me physically to get better, they helped me maintain my dignity. They were a built in support group. I miss them very much, and look forward to visiting soon.
My family and friends continue to call and e-mail me their encouragement and love- even after six months.
I found these Caregiving Tips: Advice from Patients in CURE magazine that I thought were great:
- I will take as much attention as you'll give me. Don't always fall for it.
- It's OK to still get mad at me for not doing the dishes or forgetting to pay the mortgage.
- Sometimes your positive energy has to be enough for both of us.
- Respect my self-esteem. It's hard to accept the fact that I need to be cared for.
- I don't want to feel fragile and helpless, so respect my need for independence. Let me do as much for myself as possible.
- Touch me. Cancer isn't contagious.
- If you think I am overexerting myself, check with my doctor before trying to keep me from living as normally as possible.
- Forgive me if, in my fear of the unknown, I am difficult or unkind.
- Remember to laugh and cry with me.
- Be honest with me.
I came to the end of what I can do in my own strength a long time ago. God's grace is the only thing that keeps me from bitterness and despair. Knowing that God has a plan for my life is what gives me continued hope. I have to stop thinking about "what if..." and trust in God's love and protection. I am so blessed that the Lord has put my family and so many good friends in my life to help me through the cancer.
Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up.
But pity the man who falls and has no one to help him up!
Also, if two lie down together, they will keep warm. But how can one keep warm alone?
Though one may be overpowered, two can defend themselves.
A cord of three strands is not quickly broken. (Ecclesiastes 9-12)
Saturday, May 17, 2008
The Treatment Plan
Carroll and I returned to Long Beach Friday afternoon. I will begin taking my chemo pills on Monday - 5 of Tykerb and 6 of Xeloda each day. The Tykerb is a 30-day course of treatment and Xeloda goes for two weeks at a time. I won't know how many courses of treatment I will need until we see how the cancer is responding.
I saw the naturopathic doctor again and he gave me a ton of natural supplements to help me build my bones back up, work with the traditional cancer treatments, and lessen the side effects of the chemo (and I preparing an Excel spreadsheet to help me manage all of these meds and supplements.):
I have to admit that my biggest worry now is how I am going to react to the chemo pills. Hopefully the natural supplements will reduce the side effects. Again this situation calls for faith. Either I trust that Jesus loves me enough to get me through this, or my faith is worthless.
Mother Angelica on Stress and Tension
If your experiencing stress or tension give it to Jesus. Tell Him, "I feel like crawling the wall, but I love You and I want to give this to You." Do you think our Lord wasn't tense living with those twelve screwball apostles?
I spent an hour in patient education before I left CTCA. The nurse went over what to expect and gave me a little chemo "emergency" bag that I can carry around with me. These folks think of everything.
The pain management doctor I saw is also the chief anesthesiologist for the center. The 72 hr. patch he prescribed is fantastic. I was so afraid of being overly medicated and turning into an addict that I hadn't realized that I my body was spending so much time fighting the pain that it didn't have time to fight the cancer. This patch slowly releases the pain medication over a three-day period. I am not "doped up" or even sleepy, just free from pain. The doctor told me that this patch often enables cancer patients to go back to work.
I am feeling the best I have felt in months. I am back to doing my own laundry and getting in a lot more walking time during the day.
The doctors at CTCA told me to go back home for two weeks so I could keep my MRI followup at Hoag for the gamma knife radiation and my second zometa IV infusion which is building my bones back up.
I fly back to Tulsa June 1 and begin my three weeks of radiation treatment on my hip June 2. I will be staying on site this time which will make things easier with my mobility issues. After that we will see how I am responding to the oral chemo. If everything is OK, I will be able to go back to work soon after I return home!
I saw the naturopathic doctor again and he gave me a ton of natural supplements to help me build my bones back up, work with the traditional cancer treatments, and lessen the side effects of the chemo (and I preparing an Excel spreadsheet to help me manage all of these meds and supplements.):
- whey protein powder to put in my smoothies
- Vitamin D3 (2000 units) - anti-cancer effect and strengthens bones
- Vitamin B6 - to reduce neuropathy and protect the nerves
- Similase - to enhance digestion and absorption of nutrients
- Osteo Nutrients PRO - to protect and strengthen bones
- L-Glutamine Powder - to protect the GI tract, nerves, and muscles
- Melatonin - anti-cancer effect, decreases chemotherapy side effects, acts as a natural sleep aid
- EPAmax - natural anti-inflammatory, anti-cancer effect, benefits the skin, digestive tract, and cardiovascular system
- Culterelle Lacto GG - to prevent diarrhea associated with chemotherapy
- ground flax seed to increase fiber
- pomegranate juice for extra anti-oxidants
I have to admit that my biggest worry now is how I am going to react to the chemo pills. Hopefully the natural supplements will reduce the side effects. Again this situation calls for faith. Either I trust that Jesus loves me enough to get me through this, or my faith is worthless.Mother Angelica on Stress and Tension
If your experiencing stress or tension give it to Jesus. Tell Him, "I feel like crawling the wall, but I love You and I want to give this to You." Do you think our Lord wasn't tense living with those twelve screwball apostles?
I spent an hour in patient education before I left CTCA. The nurse went over what to expect and gave me a little chemo "emergency" bag that I can carry around with me. These folks think of everything.
The pain management doctor I saw is also the chief anesthesiologist for the center. The 72 hr. patch he prescribed is fantastic. I was so afraid of being overly medicated and turning into an addict that I hadn't realized that I my body was spending so much time fighting the pain that it didn't have time to fight the cancer. This patch slowly releases the pain medication over a three-day period. I am not "doped up" or even sleepy, just free from pain. The doctor told me that this patch often enables cancer patients to go back to work.
I am feeling the best I have felt in months. I am back to doing my own laundry and getting in a lot more walking time during the day.
The doctors at CTCA told me to go back home for two weeks so I could keep my MRI followup at Hoag for the gamma knife radiation and my second zometa IV infusion which is building my bones back up.
I fly back to Tulsa June 1 and begin my three weeks of radiation treatment on my hip June 2. I will be staying on site this time which will make things easier with my mobility issues. After that we will see how I am responding to the oral chemo. If everything is OK, I will be able to go back to work soon after I return home!
Wednesday, May 14, 2008
Additional Amenities
I have to admit that when Carroll and I first came here we were skeptical. The claims seemed like marketing hype - just too good to be true. However, as each day passes I am becoming more and more convinced that CTCA actually lives up to the advertising. Everything here is first rate.
Even before you get to the center, they are on the job. They handled getting together all my medical records, scans, lab work, mammograms etc. going all the way back to my first diagnosis of cancer in 1998. That was a MAJOR burden that I didn't have to deal with.
The transportation is all taken care of. A driver meets you at the airport and makes sure your arrival at the Tulsa airport and your check in to the center is stress free. We are staying off-site at the Raddison, so a shuttle is provided every 30 minutes to take you to the center. If the shuttle doesn't fit into your schedule, they will send a private car. They also provide free transportation to the movie theaters, restaurants, church, and shopping (including Whole Foods). Every day they have outings scheduled to different points of interest in Tulsa. So far I have been too busy with my scheduled evaluations, but if I stay, it will be interesting to visit the museums.
CTCA believes that patient education is an important part of the treatment plan. Every day there are lectures you can attend on topics such as nutrition and the immune system, handling the stress of cancer, imagery and visualization, humor as part of cancer treatment, and naturopathic medicine. CTCA also provides support groups for patients and caregivers.
The center provides live music throughout the day to help the patients relax. There is a grand piano in the main hall, and other pianos are located throughout the building. The patients are invited to use the pianos as part of their therapy.
But the greatest thing is that the only thing CTCA does is treat cancer patients. I feel like I have a built-in support group. It is fantastic to be around folks who are going through the same experience as I am. And if people are willing to travel away from home for treatment, they are hopeful, not just coming here to die. It is a very upbeat group.
Being here is like being at a cancer spa - and the cost is no more than conventional treatment in your hometown. Instead of focusing just on radiation or chemo, their goal is to treat the entire patient.
Even before you get to the center, they are on the job. They handled getting together all my medical records, scans, lab work, mammograms etc. going all the way back to my first diagnosis of cancer in 1998. That was a MAJOR burden that I didn't have to deal with.
The transportation is all taken care of. A driver meets you at the airport and makes sure your arrival at the Tulsa airport and your check in to the center is stress free. We are staying off-site at the Raddison, so a shuttle is provided every 30 minutes to take you to the center. If the shuttle doesn't fit into your schedule, they will send a private car. They also provide free transportation to the movie theaters, restaurants, church, and shopping (including Whole Foods). Every day they have outings scheduled to different points of interest in Tulsa. So far I have been too busy with my scheduled evaluations, but if I stay, it will be interesting to visit the museums.
CTCA believes that patient education is an important part of the treatment plan. Every day there are lectures you can attend on topics such as nutrition and the immune system, handling the stress of cancer, imagery and visualization, humor as part of cancer treatment, and naturopathic medicine. CTCA also provides support groups for patients and caregivers.
The center provides live music throughout the day to help the patients relax. There is a grand piano in the main hall, and other pianos are located throughout the building. The patients are invited to use the pianos as part of their therapy.
But the greatest thing is that the only thing CTCA does is treat cancer patients. I feel like I have a built-in support group. It is fantastic to be around folks who are going through the same experience as I am. And if people are willing to travel away from home for treatment, they are hopeful, not just coming here to die. It is a very upbeat group.
Being here is like being at a cancer spa - and the cost is no more than conventional treatment in your hometown. Instead of focusing just on radiation or chemo, their goal is to treat the entire patient.
Tuesday, May 13, 2008
The CTCA Cafeteria
One of the outstanding CTCA amenities is the organic cafeteria, and one of the most popular treats in the cafeteria is the soft serve frozen yogurt. For those of you in California who go to Golden Spoon, let me tell you that the yogurt here is just as delicious as well as being sugar and fat free (and only costs fifty cents for as much as you want).
It is often difficult for many of the patients here taking chemo and radiation treatments to eat regular food, so frozen yogurt is all they can manage. Well for some mysterious reason, over the weekend the frozen yogurt machine broke down. I thought we were going to have a riot. People were not going to tolerate missing the one thing they are able to eat. It is very interesting what becomes an issue in your life.
The smoothie/shake bar is also popular with the CTCA residents. Yesterday I had my first prescription protein smoothie. It was definitely a taste treat. One scoop of this protein powder contains 25 grams of protien which goes a long way in helping me reach my goal of 60 grams of protein a day. You can select from a base of water, organic fruit juice, or organic milk depending on whether you want a smoothie or a shake. To the base you can add an array of fresh fruit or even a scoop of ice cream (organic of course).
The salad bar is amazing. You can select from an generous list of organic vegetables, artichoke hearts, pasta salads (today we had a wonderful blend of whole grain pasta mixed with shrimp and chicken), tabouleeh, seeds, nuts, cheeses, cottage cheese - and the selections go on! The grilled sandwiches and wraps are amazing. The entrees are not only scrumptious, but they are also building up my immune system.
What puzzles me is why with my doctor's in Long Beach diet isn't really discussed. The nutritionist at St. Mary's thought a balanced diet for a cancer patient included a huge piece of chocolate cake. Isn't it strange that I had to come 1200 miles to find a treatment plan that included organic/whole food as a critical component?
It is often difficult for many of the patients here taking chemo and radiation treatments to eat regular food, so frozen yogurt is all they can manage. Well for some mysterious reason, over the weekend the frozen yogurt machine broke down. I thought we were going to have a riot. People were not going to tolerate missing the one thing they are able to eat. It is very interesting what becomes an issue in your life.
The smoothie/shake bar is also popular with the CTCA residents. Yesterday I had my first prescription protein smoothie. It was definitely a taste treat. One scoop of this protein powder contains 25 grams of protien which goes a long way in helping me reach my goal of 60 grams of protein a day. You can select from a base of water, organic fruit juice, or organic milk depending on whether you want a smoothie or a shake. To the base you can add an array of fresh fruit or even a scoop of ice cream (organic of course).The salad bar is amazing. You can select from an generous list of organic vegetables, artichoke hearts, pasta salads (today we had a wonderful blend of whole grain pasta mixed with shrimp and chicken), tabouleeh, seeds, nuts, cheeses, cottage cheese - and the selections go on! The grilled sandwiches and wraps are amazing. The entrees are not only scrumptious, but they are also building up my immune system.
What puzzles me is why with my doctor's in Long Beach diet isn't really discussed. The nutritionist at St. Mary's thought a balanced diet for a cancer patient included a huge piece of chocolate cake. Isn't it strange that I had to come 1200 miles to find a treatment plan that included organic/whole food as a critical component?
Monday, May 12, 2008
Good News
Today was my second day at CTCA, and the news has been encouraging. I have had non-stop appointments with doctors from the various disciplines.
The radiologist thinks we can knock out the cancer in my hip socket in 15 days. I also met with the pain management doctor today and got started on a three-day patch. I feel better today than I have in weeks. I am walking all over the place. The naturopathic doctor was outstanding. He had so many natural alterntives for reducing the side effects of the radiation and chemo. With the team approach they practice here, every member of your team knows what the other members are doing so your care is coordinated.
The radiologist thinks we can knock out the cancer in my hip socket in 15 days. I also met with the pain management doctor today and got started on a three-day patch. I feel better today than I have in weeks. I am walking all over the place. The naturopathic doctor was outstanding. He had so many natural alterntives for reducing the side effects of the radiation and chemo. With the team approach they practice here, every member of your team knows what the other members are doing so your care is coordinated.
Saturday, May 10, 2008
Transportation Dilemma
One of the most difficult aspects of having a brain trauma is having your driver's license suspended. You can't image how hard it is to have to wait to have other people drive you everywhere you need to go. The first few weeks everyone is very sympathetic, but after five months you can hear the silent sighs of even your family members as they surreptitiously look at their watches. As my daughter put it,"Mom you are on disability, and Dad and I are going to be on unemployment if we keep taking off from work." And she is right. Life must go on for everyone; people have obligations at work they must keep. I have to find ways to solve my own transportation problems.
At first I hired a driver to take me home from rehab and to doctor's appointments. However, when my driver got her car stolen (she later recovered it), I figured it was a good time for me to come up with a cheaper solution. So I started riding the public bus, which was a strange but interesting experience. With the help of my cool "Dr. House-like" cane I walked the few blocks to the bus stop near the rehab center. Then I would walk the mile home from my bus stop.
You soon learn there is a definite pecking order in the world of disabilities on the bus. I always prayed that a wheelchair person wouldn't get on because then I had to move out of the disabled seat area and find something in the back before the bus driver pulled away and I fell over. One day I couldn't get my left leg over fast enough when I sat down, and the lady next to me started to yell at me. "What's wrong with you?' she demanded. I explained that I had a brain tumor removed and that my left side was a little slow. She decided to announce to the entire bus that I had had a brain tumor. My physical disability has admitted me into a very unique subculture that I never imagined I would be part of. You cannot image this world if you haven't been part of it.
Now that I can't walk the mile home from the bus stop, I applied for Access transportation. Access is the Americans with Disabilities Act (ADA) mandated paratransit transportation program for Los Angeles County. On the day of my evaluation, the Access van picked me up and took me to the evaluation center. The driver got a little confused and went back to my house after he picked me up to pick me up again. I found myself in this van surrounded by other people with mobility challenges. I think I have been in denial up until now and have pretended to myself that I am perfectly normal. I think sitting in the van finally made me face the fact that I am not exactly the same as I used to be.
A strange aspect of the disabled subculture is that the folks on the "other side" think that just because you can't walk you must also have mental problems. Medical and social workers often speak to me in slow, soft voices using simple vocabulary just in case I can't follow the conversation. It is kind of funny (sometimes).
Anyhow, I arrived at the evaluation center which was ten times stranger than the DMV. I sat in a huge waiting room where everyone was watching reruns of Gilligan's Island with no sound on an old television that showed the images in purple. The evaluation process itself was highly efficient, and I soon found myself telling my story to a case worker who would decide if I am eligible for disability transportation services. It is kind of weird having to share the intimate details of having breast cancer with someone so you can call a cab.
On the way home we drove all over Southern California in an Access van dropping folks off along the way. It was very surreal. One man in an electric wheelchair got dropped off at a cool chicken diner. The other people in the van were writing down the address so they could return later for a snack. Another rider had been a trial lawyer in Long Beach for 48 years. He had flunked his driver's test three times and was also trying to get approved for Access. This has got to be material for a book.
Finally at 5:30 I arrived home. Hopefully, I will get my license back by June. In the meantime, I will enjoy the folks the Lord has given me the opportunity to meet, minister to, and pray for. Without my disability I would never have know they existed.
At first I hired a driver to take me home from rehab and to doctor's appointments. However, when my driver got her car stolen (she later recovered it), I figured it was a good time for me to come up with a cheaper solution. So I started riding the public bus, which was a strange but interesting experience. With the help of my cool "Dr. House-like" cane I walked the few blocks to the bus stop near the rehab center. Then I would walk the mile home from my bus stop.
You soon learn there is a definite pecking order in the world of disabilities on the bus. I always prayed that a wheelchair person wouldn't get on because then I had to move out of the disabled seat area and find something in the back before the bus driver pulled away and I fell over. One day I couldn't get my left leg over fast enough when I sat down, and the lady next to me started to yell at me. "What's wrong with you?' she demanded. I explained that I had a brain tumor removed and that my left side was a little slow. She decided to announce to the entire bus that I had had a brain tumor. My physical disability has admitted me into a very unique subculture that I never imagined I would be part of. You cannot image this world if you haven't been part of it.
Now that I can't walk the mile home from the bus stop, I applied for Access transportation. Access is the Americans with Disabilities Act (ADA) mandated paratransit transportation program for Los Angeles County. On the day of my evaluation, the Access van picked me up and took me to the evaluation center. The driver got a little confused and went back to my house after he picked me up to pick me up again. I found myself in this van surrounded by other people with mobility challenges. I think I have been in denial up until now and have pretended to myself that I am perfectly normal. I think sitting in the van finally made me face the fact that I am not exactly the same as I used to be.
A strange aspect of the disabled subculture is that the folks on the "other side" think that just because you can't walk you must also have mental problems. Medical and social workers often speak to me in slow, soft voices using simple vocabulary just in case I can't follow the conversation. It is kind of funny (sometimes).
Anyhow, I arrived at the evaluation center which was ten times stranger than the DMV. I sat in a huge waiting room where everyone was watching reruns of Gilligan's Island with no sound on an old television that showed the images in purple. The evaluation process itself was highly efficient, and I soon found myself telling my story to a case worker who would decide if I am eligible for disability transportation services. It is kind of weird having to share the intimate details of having breast cancer with someone so you can call a cab.
On the way home we drove all over Southern California in an Access van dropping folks off along the way. It was very surreal. One man in an electric wheelchair got dropped off at a cool chicken diner. The other people in the van were writing down the address so they could return later for a snack. Another rider had been a trial lawyer in Long Beach for 48 years. He had flunked his driver's test three times and was also trying to get approved for Access. This has got to be material for a book.
Finally at 5:30 I arrived home. Hopefully, I will get my license back by June. In the meantime, I will enjoy the folks the Lord has given me the opportunity to meet, minister to, and pray for. Without my disability I would never have know they existed.
First Day at CTCA
Friday was nonstop as Carroll and I met with my case manager, patient educator, oncologist, and nutritionist. Everyone is very friendly here and you know that you aren't just a number. The best part is I don't have to do a thing. All my appointments are coordinated, and I know that everyone on my team is getting the SAME information they need. I don't know if it's part of CTCA employee training or maybe the folks in Oklahoma are just naturally friendly - like they are in North Carolina.
The cafeteria (they call it a cafe) here is incredible. Everything is organic and designed to repair the immune system. The food is actually delicious even if it is healthy. Yesterderday for lunch I had a grilled portobello mushroom sandwich, sweet potato fries, and cream of sweet potato soup for $2.00! The green tea is free. There is one area of the cafe where you can order all types of custom protein shakes and smoothies. I got a "prescription" for my protein shake from the nutritionist yesterday. I need 60 grams of protein a day which is kind of hard to manage when I am trying to keep the calories down since it's difficult for me to exercise right now.
We still haven't made a final decision about whether I will stay here for treatment or go back to Long Beach. I have a lot of tests to take on Monday and Tuesday, and I still have to meet the homeopathic doctor. Once we get all this information, it will be clearer which way God wants me to go.
The cafeteria (they call it a cafe) here is incredible. Everything is organic and designed to repair the immune system. The food is actually delicious even if it is healthy. Yesterderday for lunch I had a grilled portobello mushroom sandwich, sweet potato fries, and cream of sweet potato soup for $2.00! The green tea is free. There is one area of the cafe where you can order all types of custom protein shakes and smoothies. I got a "prescription" for my protein shake from the nutritionist yesterday. I need 60 grams of protein a day which is kind of hard to manage when I am trying to keep the calories down since it's difficult for me to exercise right now.
We still haven't made a final decision about whether I will stay here for treatment or go back to Long Beach. I have a lot of tests to take on Monday and Tuesday, and I still have to meet the homeopathic doctor. Once we get all this information, it will be clearer which way God wants me to go.
Tuesday, May 6, 2008
Handling Dark Days
I have to admit that I have a very low tolerance for pain. But for the two months I was in St. Mary's Hospital, I was very blessed that I miraculously experienced almost no pain. After a five and a half hour crainiotomy, I didn't even have a headache. I didn't even take aspirin after the gamma knife radiation. I thought I was going to be able to just cruise through brain cancer. I just knew God had no intention of introducing suffering into this scenario.
Then I was discharged from the hospital. Up until then I was with patients who were all in the rehab department. When I got home, and was back in the "normal" world, I had to admit that I have physical disabilities. That was really, really hard. It was a blow to my pride and independence. There are several dents in my bedroom wall that remind me of thrown pill bottles and cell phones when the reality of my life became too much to live with.
I am still struggling with the physical changes in my life - and I have good days and bad days, but never despairing days. I heard the coolest thing at church last Sunday: there is a time for remorse. People have to be allowed time to process the bad things that happen to them and feel sad. It irritates me when well-intentioned people expect that a simple Bible verse is going to make me feel better about having cancer. Of course I know that all things work together for good, but I also believe the Lord allows us time to grieve.
BUT the important thing is that I can't stay in the grief. If I stay in the sadness I become bitter and depressed. I have to keep reaching out in faith knowing that God truly loves me. The joy is getting easier to find.
Just yesterday I thanked God for all the time He has given me to pray, read, and watch EWTN. I thank Him for all the time I have to sleep. I can now thank Him (this took months) that someone else has to clean the house and do the laundry. I haven't felt this rested in decades. I am SLOWLY learning that I can ask people for help, but this is still difficult.
Now about handling the pain. Just last month I was walking home the mile from the bus stop to my house. I felt very proud that I could do this even if it took 45 minutes. Then three weeks ago I found out the breast cancer had spread to the bone. It seemed like overnight the pain in my right hip became unbearable at times. I am learning how much I can walk without putting too much stress on my hip socket, and am devouring Tylenol throughout the day. Carroll came up with the great idea of using Aspercream topically. His remedy is working well. I'll find out next week if I am going to need further radiation to the hip.
Instead of sitting in bed crying about the pain, I am now trying to offer it up as a sacrifice to the Lord. I continue to pray for a healing from the cancer, but I am beginning to see that the pain I am experiencing is not necessarily I bad thing; it has spiritual value. Below you can read some of Mother Angelica's thoughts on pain and suffering:
Wasted Pain
Suffering in itself does not make us holy. It is only when we unite it, out of love to the suffering of Christ that it has meaning. Suffering without love is wasted pain.
Prayer When in Pain
Lord, I attach my pain to all of Your pain. I do not understand the mystery of pain, nor do I grasp the power of it to change a stubborn will like mine. Though I do not understand your plan, my Lord, I accept it. I trust Your love and give You mine in the hope of being lost in Your embrace. Amen.
Eternal Words on Suffering
Think of what Christ suffered in this life; and then arm yourselves with the same resolution that He had: anyone who in this life has bodily suffering has broken with sin, because for the rest of his life on earth he is not ruled by human passions, but only by the will of God. (1 Peter 4: 1-2)
My dear people, you must not think it unaccountable that you should be tested by fire. There is nothing extraordinary in what has happened to you. If you can have some share in the sufferings of Christ, be glad, because you will enjoy much greater gladness when His glory is revealed. (1 Peter 4: 12-13)
Then I was discharged from the hospital. Up until then I was with patients who were all in the rehab department. When I got home, and was back in the "normal" world, I had to admit that I have physical disabilities. That was really, really hard. It was a blow to my pride and independence. There are several dents in my bedroom wall that remind me of thrown pill bottles and cell phones when the reality of my life became too much to live with.
I am still struggling with the physical changes in my life - and I have good days and bad days, but never despairing days. I heard the coolest thing at church last Sunday: there is a time for remorse. People have to be allowed time to process the bad things that happen to them and feel sad. It irritates me when well-intentioned people expect that a simple Bible verse is going to make me feel better about having cancer. Of course I know that all things work together for good, but I also believe the Lord allows us time to grieve.
BUT the important thing is that I can't stay in the grief. If I stay in the sadness I become bitter and depressed. I have to keep reaching out in faith knowing that God truly loves me. The joy is getting easier to find.
Just yesterday I thanked God for all the time He has given me to pray, read, and watch EWTN. I thank Him for all the time I have to sleep. I can now thank Him (this took months) that someone else has to clean the house and do the laundry. I haven't felt this rested in decades. I am SLOWLY learning that I can ask people for help, but this is still difficult.
Now about handling the pain. Just last month I was walking home the mile from the bus stop to my house. I felt very proud that I could do this even if it took 45 minutes. Then three weeks ago I found out the breast cancer had spread to the bone. It seemed like overnight the pain in my right hip became unbearable at times. I am learning how much I can walk without putting too much stress on my hip socket, and am devouring Tylenol throughout the day. Carroll came up with the great idea of using Aspercream topically. His remedy is working well. I'll find out next week if I am going to need further radiation to the hip.
Instead of sitting in bed crying about the pain, I am now trying to offer it up as a sacrifice to the Lord. I continue to pray for a healing from the cancer, but I am beginning to see that the pain I am experiencing is not necessarily I bad thing; it has spiritual value. Below you can read some of Mother Angelica's thoughts on pain and suffering:
Wasted Pain
Suffering in itself does not make us holy. It is only when we unite it, out of love to the suffering of Christ that it has meaning. Suffering without love is wasted pain.
Prayer When in Pain
Lord, I attach my pain to all of Your pain. I do not understand the mystery of pain, nor do I grasp the power of it to change a stubborn will like mine. Though I do not understand your plan, my Lord, I accept it. I trust Your love and give You mine in the hope of being lost in Your embrace. Amen.
Eternal Words on Suffering
Think of what Christ suffered in this life; and then arm yourselves with the same resolution that He had: anyone who in this life has bodily suffering has broken with sin, because for the rest of his life on earth he is not ruled by human passions, but only by the will of God. (1 Peter 4: 1-2)
My dear people, you must not think it unaccountable that you should be tested by fire. There is nothing extraordinary in what has happened to you. If you can have some share in the sufferings of Christ, be glad, because you will enjoy much greater gladness when His glory is revealed. (1 Peter 4: 12-13)
Monday, May 5, 2008
Living in the Present Moment
By studying the writings of St. Faustina and Mother Angelica, I am learning how important it is to "live in the Present Moment." Instead of feeling sorry for myself and wishing my life could go back to before November 15 or stressing about what decisions I have to make next week to treat the breast cancer that has metastisized to my brain and bone, I am learning (after 55 years) that I can more easily handle what is happening to me moment by moment.
By nature I am not a patient person. I like to have my life planned out months in advance. I like everything to be perfect. I like to post "to-do" lists all around my house. I like to be in control of what is happening to me (and other people). It is impossible to have this philosophy and also follow God's will for my life.
I am including some of Mother Angelica's thoughts that that are helping me to more purposefully live through this adventure.
Starting Over
Very few people live in the Present Moment. It's like a new sheet of paper. Did you ever wish you could start all over again? Well, you can. That's what the Present Moment is. It's God giving you a brand-new sheet to begin again. But some people keep scribbling the same miserable thing on it.
God's Love/God's Will
Do you really believe God loves you? If you do, you know everything that happens in your life is for your good. And it isn't always a peaceful experience.
Praying in Darkness
Sometimes I am so cold and in such darkness that I merely look to Heaven and plead for light. That's a prayer of faith. A lot of people think faith is all joy. Well, I don't. Faith is sometimes scary. There are many moments in life where you are uncertain about which way to go. That kind of faith is hard. There's a type of darkness in Faith, not the darkness that comes from sin, but the darkness that necessitates trust.
The Preparation of Pain
As I look back, pain was always a preparation for me. The Lord allowed pain before accomplishing anything He asked me to do. It made me more aware of my own weaknesses, my own faults, my own incompetence, my own lack of knowledge...it made me appreciate the fact that God must do everything.
By nature I am not a patient person. I like to have my life planned out months in advance. I like everything to be perfect. I like to post "to-do" lists all around my house. I like to be in control of what is happening to me (and other people). It is impossible to have this philosophy and also follow God's will for my life.
I am including some of Mother Angelica's thoughts that that are helping me to more purposefully live through this adventure.
Starting Over
Very few people live in the Present Moment. It's like a new sheet of paper. Did you ever wish you could start all over again? Well, you can. That's what the Present Moment is. It's God giving you a brand-new sheet to begin again. But some people keep scribbling the same miserable thing on it.
God's Love/God's Will
Do you really believe God loves you? If you do, you know everything that happens in your life is for your good. And it isn't always a peaceful experience.
Praying in Darkness
Sometimes I am so cold and in such darkness that I merely look to Heaven and plead for light. That's a prayer of faith. A lot of people think faith is all joy. Well, I don't. Faith is sometimes scary. There are many moments in life where you are uncertain about which way to go. That kind of faith is hard. There's a type of darkness in Faith, not the darkness that comes from sin, but the darkness that necessitates trust.
The Preparation of Pain
As I look back, pain was always a preparation for me. The Lord allowed pain before accomplishing anything He asked me to do. It made me more aware of my own weaknesses, my own faults, my own incompetence, my own lack of knowledge...it made me appreciate the fact that God must do everything.
Sunday, May 4, 2008
Second Opinion
I will be leaving for Tulsa, OK on Thursday to go to the Cancer Treatment Center of America (CTCA) for a second opinion. My evaluation will begin on Friday and last until the following Wednesday. I can't thank my brother David enough for making the initial contact with CTCA and encouraging my following up.
Carroll thought is was strange that I wanted to go to Oklahoma for a second opinion when we are living in Southern California. He thought I should go to UCLA or City of Hope, but to me going to these places was just more of the same traditional philosophy for treating cancer -- radiation, chemo, surgery, and toxic meds. At CTCA I will have the additional components of homeopathic and nutritional treatment combined with the traditional. CTCA also has PT and OT which I still need for my left side. That's what I call one-stop shopping. It is really difficult to try to coordinate all of these different treatment components myself.
My oncologist in Long Beach wanted me to start the first course of Tykerb chemo pills on Friday. Unfortunately, if I start the chemo treatment now, I have to wait two months to be evaluated at CTCA. I have decided to wait until I go to Tulsa to decide on a final course of treatment.
As most of you know I found out three weeks ago that the breast cancer had spread to the bone. I am trying to keep the meds to a minimum, but Tylenol isn't quite doing the trick anymore. So the oncologist asked me if I wanted morphine. I am sticking with the Tylenol as long as I can!
Carroll thought is was strange that I wanted to go to Oklahoma for a second opinion when we are living in Southern California. He thought I should go to UCLA or City of Hope, but to me going to these places was just more of the same traditional philosophy for treating cancer -- radiation, chemo, surgery, and toxic meds. At CTCA I will have the additional components of homeopathic and nutritional treatment combined with the traditional. CTCA also has PT and OT which I still need for my left side. That's what I call one-stop shopping. It is really difficult to try to coordinate all of these different treatment components myself.
My oncologist in Long Beach wanted me to start the first course of Tykerb chemo pills on Friday. Unfortunately, if I start the chemo treatment now, I have to wait two months to be evaluated at CTCA. I have decided to wait until I go to Tulsa to decide on a final course of treatment.
As most of you know I found out three weeks ago that the breast cancer had spread to the bone. I am trying to keep the meds to a minimum, but Tylenol isn't quite doing the trick anymore. So the oncologist asked me if I wanted morphine. I am sticking with the Tylenol as long as I can!
Monday, April 28, 2008
Choices: A Study of the Book of Job
It is really a very sobering thing to realize that the tests that come into our life are aimed at getting us to curse God to His face, to tell Him that He is wrong, that He does not keep His promises, that He is not the kind of God that we have been told He is. If you take note of your own life, you will recognize that, when under pressure, the thing you want more than anything else is to cry out in protest to God that He is not keeping His promises. That is where Satan always aims. He has the same philosophy and the same objective today: he wants us to curse God, as he wanted Job to curse God.
But God's protecting hand has been over us. If we can sit here with any degree of peace and enjoyment it is because the hand of God has been like a hedge about us, protecting us and giving us great and wonderful things. Therefore, the attitude of every human heart ought to be, "Thank God for what I've got. Thank God for where I am now. What the future may hold, only He knows. And if it holds some kind of testing like this, it is only because, as St. Paul reminded us in First Corinthians, "God will not test you above what you are able to bear." (1Cor 10:13).
God knows what we can bear, and He will not put us to the test so severe it must destroy our faith. But there are implications in every test that go far beyond the superficial aspects of the situation. That is what we need to remember. And as the remarkable book of Job unfolds, we see some of the things that God brought to the attention of Job.
That is why we have the book of Job, to show us that there are reasons and purposes in our trials and sufferings that we do not see. Job could not see what was going on behind the scenes, and neither can we. And yet God knows, and God is working out an object. He has a purpose for it, and it is a proper and right purpose that will end up manifesting more fully the love and compassion of His heart. The test of every trial is always to this end.
But God's protecting hand has been over us. If we can sit here with any degree of peace and enjoyment it is because the hand of God has been like a hedge about us, protecting us and giving us great and wonderful things. Therefore, the attitude of every human heart ought to be, "Thank God for what I've got. Thank God for where I am now. What the future may hold, only He knows. And if it holds some kind of testing like this, it is only because, as St. Paul reminded us in First Corinthians, "God will not test you above what you are able to bear." (1Cor 10:13).
God knows what we can bear, and He will not put us to the test so severe it must destroy our faith. But there are implications in every test that go far beyond the superficial aspects of the situation. That is what we need to remember. And as the remarkable book of Job unfolds, we see some of the things that God brought to the attention of Job.
That is why we have the book of Job, to show us that there are reasons and purposes in our trials and sufferings that we do not see. Job could not see what was going on behind the scenes, and neither can we. And yet God knows, and God is working out an object. He has a purpose for it, and it is a proper and right purpose that will end up manifesting more fully the love and compassion of His heart. The test of every trial is always to this end.
St. Faustina's Prayer
Saint Faustina, the apostle of Divne Mercy, is a constant reminder of the message to trust in Jesus' endless mercy, and to live life mercifully toward others. The prayer below, written by Saint Faustina, speaks to my spirit as I go through this present adventure.O My God,
When I look into the future, I am frightened,
But why plunge into the future?
Only the present moment is precious to me,
As the future may never enter my soul at all.
It is no longer in my power ,
To change, correct, or add to the past;
For neither sages nor prophets could do that.
And so what the past has embraced, I must entrust to God.
O present moment, you belong to me, whole and entire.
I desire to use you as best I can.
And although I am weak and small,
You grant me the grace of your omnipotence.
And so trusting in Your mercy,
I walk through life like a little child,
Offering You each day this heart,
Burning with love for Your greater glory.
For more information about the Divine Mercy message check out these links:
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