Yipee!! It's Friday and that means that the weekend is nearly here! Today is one of those days where I don't feel like working but I will be responsible and do the right thing. Fortunately, I only have one house to clean today and that will go by pretty quickly. I'm really in the mood to work on my Genealogy book some more, scrapbook and start Laura Lou's Graduation DVD. I need to start scanning tons of pictures so I can burn them to music. The plan is to insert them with her graduation announcement and send that off to family members who can't make it down for her graduation. For those who do make it down here, we'll play it during the Open House and then they can take a copy home with them.
I have 3 songs I intend to use. The first one has been a favorite of mine, "You'll Be In My Heart" from Tarzan, since the movie first came out. I think this one will be good for all of those pictures of her when she's really young. The second song, for all of those slightly older aged pictures as well as her goofy pictures, is "Girls Just Wanna Have Fun". My last song will be "Breakaway" by Kelly Clarkson. That one is very fitting! If it looks like I have to cut one song, it'll be the second one. I won't know until I begin the Hurculean task of scanning 19 years worth of photographs! When Jessica graduated from HS I made her a scrapbook. I wanted to do something a little different for Lou, although I will create her own book just for her.
I can't wait to retire! If Laura has Senioritis, then I have retiree-itis! I'm still young, only 45, but I look forward to the day when I can get up in the morning and ask, "What will I do today?" Then...I get to go do it!
Time to get going, pour another cup of coffee and get off my lazy behind! Oh yeah, Dave & Laura's skydiving was rescheduled for tomorrow but we've got our eye on the weather. The first time was cancelled due to thunderstorms and the second time because of wind gusts up to 50mph. e may be in for some more bad weather! Keeping my fingers crossed!
Friday, March 31, 2006
Wednesday, March 29, 2006
In 1909, the McCollums siblings were photographed. Elizabeth Petty McCollum is pictured (front row left) holding Evoline. Next to her is Gladys with Aunt Marietta holding Clifford. Grandpa Homer is seated far right. The remainder of Grandpa Homer's siblings in the back row, left to right are Uncle Fred, Aunt June, Aunt Stella and Aunt Flora.
JUST ANOTHER DAY
Today is probably going to be one of those ordinary days. If that sounds boring, well that's okay because a little ordinariness every now & then is a good thing! It's early still although Dave has already left for work. Laura Lou & Charlie are still in their rooms sound asleep. It's raining lightly outside and with the windows open it's a refreshing sound, one of my favorites.
The sound of rain falling never fails to bring back childhood memories. When I was a little girl, I would stay before & after school as well as summer vacations with my paternal grandmother, Grandma Arra. She lived in a large house on the corner in the inner city of St Louis where I grew up. My Mom & I lived just one street over. She had one room upstairs that was a corner room with many windows. I can remember playing "Barbies" or reading my books lying on the couch in that room. In the summer, if we got a good rain, I would love the smell of the steam rising from the concrete sidewalks below.
Another memory that is resurrected when I smell rain is of my Granny's house. Sometimes during the summer, my Grandma Arra & I would take a "road trip" (actually she didn't drive so we would either get a ride from a friend or take the Continental Trailways bus) and go visit her mom, my Granny Lizzie. Not everyone is fortunate enough to have a great-grandmother while they're growing up. Granny was special. I remember her singing these goofy little songs about having a "rocket in her pocket" whatever that was supposed to mean! She lived in a really old house in the boot heel of Missouri. They had even used the outhouse up until 1965, that was before they added a bathroom onto the little house when Grandpa Homer was diagnosed with cancer. (The outhouse is a post unto itself, maybe at a later date.) The little house had a tin roof and in the summer when the rain fell on it, it was a wonderful sound that would sing you to sleep like a lullaby.
Granny kept a big enamel pail with a lid, on the table top along with a "dipper" for pouring water. Granny's house had a smell all of its own. I learned how to fry eggs at her house one summer.
Granny also had a swing on the enclosed porch and I would sit in it, swinging and reading for hours. Although he was long gone, Grandpa Homer's "spit cans" (coffee cans) still sat next to his old rocker where he would sit and watch the mosquitos fly by. Risco, MO had a population of 316 so heavy traffic was not something you had to put up with! Generations of kids had played in their dirt yard, burying the ancient die-cast metal cars & toys with the old spoons we'd used for turning up dirt. "Tillie" the cat would saunter by and pretty much ignore everyone and everything around her. This is of course, what cats do best!
Granny had a TV set but you could only get 2 fuzzy channels to come through on it. It was enough for her though to watch her "stories" (AKA soap operas). Granny loved old-time Gospel music and would listen to it on the radio in her living/bedroom. When Grandpa was sick, that room became the heart of the home and stayed that way until Granny was too old to live alone. Grandpa Homer was an ordained minister in the Missionary Baptist Chirch and would fill in for preachers when they were gone. He had worked the coal mines in their home state of Alabama and had been a farmer as well.
I have a newspaper article where she had been interviewed for her 86th birthday. In it she says that women were treated better by their husbands "before they got the vote" and that she never would believe that men had walked on the moon. It was filmed in Hollywood because she couldn't find anything in her bible to back it up! Granny was something else!
Miss Elizabeth Petty had married Mr Homer McCollum back in 1906. Together they had had 7 children and she knew the heartbreak of losing 3 children. One of the twins, Uncle AZ, was killed onboard the USS Enterprise in 1942 in the Battle of the Solomon Islands and Uncle James, whom my Daddy is named after, was murdered in Oklahoma when he was looking for work back in 1936. Aunt Evoline died of cancer in 1976. Out of all these children only 2 remain, Uncle AC (twin brother of AZ) and Aunt Beryl. They are both in their 80's now.
Granny left us and went to be with Jesus 21 years ago. She missed Grandpa all those years and told us she was ready to go whenever the good Lord wanted her. Granny died just shy of her 95th birthday. She had never cut her hair and always wore it pulled up in a bun. She had always said that a woman's hair was her crowning glory. In her final years she lived with my Grandma Arra until it became too hard on her. Granny lived in a home the last year of her life. I would go and brush her hair and trim her toenails for her, just wanting to be near her. Her mind had wandered some as she got older and she always carried a doll with her everywhere she went. She named it "Irene" and Grandma Arra had even bought her clothes for it so she could change it. In my mind I have always believed that she had returned to her younger years when she had babies of her own. I think that's when she was the happiest, chasing after 7 children and wearing their behinds out with a switch.
It was sad to loose Granny, she was such a fixture, an anchor in our family. The day of her funeral, for those of us who have accepted Christ, we rejoiced. We knew that she was with the Savior she had loved her whole life and reunited with Grandpa Homer, Uncle James, Uncle AZ & Aunt Evoline. We buried "Irene" with her. Grandma even gave me one of her little outfits that I keep in my trunk. One day, when it's my time to leave, I know that she'll be one of those people with her arms open wide welcoming me into heaven. Then we'll sit and we'll catch up on old times and I'll enjoy once again, just being near her.
The sound of rain falling never fails to bring back childhood memories. When I was a little girl, I would stay before & after school as well as summer vacations with my paternal grandmother, Grandma Arra. She lived in a large house on the corner in the inner city of St Louis where I grew up. My Mom & I lived just one street over. She had one room upstairs that was a corner room with many windows. I can remember playing "Barbies" or reading my books lying on the couch in that room. In the summer, if we got a good rain, I would love the smell of the steam rising from the concrete sidewalks below.
Another memory that is resurrected when I smell rain is of my Granny's house. Sometimes during the summer, my Grandma Arra & I would take a "road trip" (actually she didn't drive so we would either get a ride from a friend or take the Continental Trailways bus) and go visit her mom, my Granny Lizzie. Not everyone is fortunate enough to have a great-grandmother while they're growing up. Granny was special. I remember her singing these goofy little songs about having a "rocket in her pocket" whatever that was supposed to mean! She lived in a really old house in the boot heel of Missouri. They had even used the outhouse up until 1965, that was before they added a bathroom onto the little house when Grandpa Homer was diagnosed with cancer. (The outhouse is a post unto itself, maybe at a later date.) The little house had a tin roof and in the summer when the rain fell on it, it was a wonderful sound that would sing you to sleep like a lullaby.
Granny kept a big enamel pail with a lid, on the table top along with a "dipper" for pouring water. Granny's house had a smell all of its own. I learned how to fry eggs at her house one summer.
Granny also had a swing on the enclosed porch and I would sit in it, swinging and reading for hours. Although he was long gone, Grandpa Homer's "spit cans" (coffee cans) still sat next to his old rocker where he would sit and watch the mosquitos fly by. Risco, MO had a population of 316 so heavy traffic was not something you had to put up with! Generations of kids had played in their dirt yard, burying the ancient die-cast metal cars & toys with the old spoons we'd used for turning up dirt. "Tillie" the cat would saunter by and pretty much ignore everyone and everything around her. This is of course, what cats do best!
Granny had a TV set but you could only get 2 fuzzy channels to come through on it. It was enough for her though to watch her "stories" (AKA soap operas). Granny loved old-time Gospel music and would listen to it on the radio in her living/bedroom. When Grandpa was sick, that room became the heart of the home and stayed that way until Granny was too old to live alone. Grandpa Homer was an ordained minister in the Missionary Baptist Chirch and would fill in for preachers when they were gone. He had worked the coal mines in their home state of Alabama and had been a farmer as well.
I have a newspaper article where she had been interviewed for her 86th birthday. In it she says that women were treated better by their husbands "before they got the vote" and that she never would believe that men had walked on the moon. It was filmed in Hollywood because she couldn't find anything in her bible to back it up! Granny was something else!
Miss Elizabeth Petty had married Mr Homer McCollum back in 1906. Together they had had 7 children and she knew the heartbreak of losing 3 children. One of the twins, Uncle AZ, was killed onboard the USS Enterprise in 1942 in the Battle of the Solomon Islands and Uncle James, whom my Daddy is named after, was murdered in Oklahoma when he was looking for work back in 1936. Aunt Evoline died of cancer in 1976. Out of all these children only 2 remain, Uncle AC (twin brother of AZ) and Aunt Beryl. They are both in their 80's now.
Granny left us and went to be with Jesus 21 years ago. She missed Grandpa all those years and told us she was ready to go whenever the good Lord wanted her. Granny died just shy of her 95th birthday. She had never cut her hair and always wore it pulled up in a bun. She had always said that a woman's hair was her crowning glory. In her final years she lived with my Grandma Arra until it became too hard on her. Granny lived in a home the last year of her life. I would go and brush her hair and trim her toenails for her, just wanting to be near her. Her mind had wandered some as she got older and she always carried a doll with her everywhere she went. She named it "Irene" and Grandma Arra had even bought her clothes for it so she could change it. In my mind I have always believed that she had returned to her younger years when she had babies of her own. I think that's when she was the happiest, chasing after 7 children and wearing their behinds out with a switch.
It was sad to loose Granny, she was such a fixture, an anchor in our family. The day of her funeral, for those of us who have accepted Christ, we rejoiced. We knew that she was with the Savior she had loved her whole life and reunited with Grandpa Homer, Uncle James, Uncle AZ & Aunt Evoline. We buried "Irene" with her. Grandma even gave me one of her little outfits that I keep in my trunk. One day, when it's my time to leave, I know that she'll be one of those people with her arms open wide welcoming me into heaven. Then we'll sit and we'll catch up on old times and I'll enjoy once again, just being near her.
Monday, March 27, 2006
GOD'S SAVING HAND!!
This weekend, Dave & I took our son Charles and his best friend since Kindergarten, Tyler, on a weekend camping trip to Caddo Lake State Park. We left Friday afternoon and drove 200 miles NE from the Metroplex. Caddo Lake is the only natural lake in Texas, the rest being man-made. The town of Karnack which is the official address of Caddo Lake is the childhood home of Lady Bird Johnson, wife of LBJ.
http://www.tpwd.state.tx.us/spdest/findadest/parks/caddo_lake/
Originally this trip was intended for the 5 families in our Life Group but only the Davis' and their 4 year-old twins, Madison & Ashley were able to come.
The weather forecast was for sunny skies and highs in the 50's & 60's for Sat & Sunday and lows in the 30's and 40's for Friday night and Sat night. We decided that the boys could have their own tent which would be more fun for them.We got there, set up camp and had a wonderful dinner prepared by Mike & Alicia, who had arrived earlier in that day. We had our usual campfire and chatted and then turned into our nice, warm sleeping bags.
Sat morning I made hot chocolate and hot cider along with Breakfast Burritos. The decision was made to rent canoes and take a picnic lunch with us while we were out for the day. The lake is fed by a river system so we would paddle a 10 mile round trip course. We let the boys have their own canoe, Dave & I started out with Ashley in our canoe and Mike & Alicia had Madison in theirs.
The area where our campsite was, is right on a bayou like area. It had the really tall cypress trees with spanish moss hanging down from them, touching the water. It was cool and somewhat eery to look at. Friday night we were awakened by wolves howling and we had teased the boys earlier in the evening that Swamp Thing was going to come out of the bayou sometime after they had went to bed. This made for some interesting scenery as we paddled our canoes.
It wasn't long before we entered the river system and paddled along it. We passed homes, probably vacation and retirement cabins for quite a ways. Eventually we took a channel off of the river and paddled through more bayou country. It was a really nice visual experience, very pristine and primitive. I could picture the Caddo Indians as they used these waters to navigate through their lands hundred of years ago. We saw herons and I spotted a beaver lodge with 4 beavers sitting inside. They actually allowed us to get pretty close to them so we could take pictures.
We found a "beach" area and decided to stop for our lunch. We got out and stretched, ate and just relaxed a while. Dave & I traded off and took Madison in our canoe as we headed back out. We paddled along and as we looked back to see how the boys were doing as well as Mike & Alicia, we had to laugh that Ashley had fallen peacefully asleep lying there in the middle of their canoe. Both girls had been enjoying themselves looking at the scenery and going from one side to the other putting their hands in the water. I had even joked to Dave when we had Ashley that she was probably the kink of kid who like to rock the cage on the ferris wheel!
We eventually came back to the river and headed back towards our camping area. Then the HAND OF GOD happened! I was in the front of the canoe, Dave in the back, steering and being the "weight adjuster". I was paddling the canoe and the next thing I knew I was falling into the water! I don't remember yelling and as quickly as it happened, I also felt like it was playing out in slow-motion! I went into the water, which was very cold and I remember the shock of suddenly being thrown in. Instantly what was running through my mind was "What did I do, to end up in the water?" As I broke the surface, I was sputtering and coughing. I looked over and saw that Dave was in the water as well and I immediately thought, "Uh oh, this is really bad if he is in the water too!" I was wearing my life jacket but I hadn't buckled it (stupid I know). It stayed on even though I felt it loose and brushing against me. I was wearing a sweater, jeans and hiking boots so I had a lot of weight pulling on me. I looked back and could see that Madison was in the canoe so I felt relieved about that. I was reaching for Charlie and Tyler's canoe so I wouldn't have to tread water so much. I told them just to paddle to shore and not try and pull me in to their canoe. In the meantime, Dave had managed to pull himself back into our canoe and was paddling to shore as well. Mike had retrieved some of our stuff that was floating. Unfortunately for Dave his glasses didn't float and are somewhere in the bottom of that river!
As we got to shore, I was feeling less shocked and was less anxious. We drug the canoe ashore and dumped all the water from inside it. We wrung the water out of our clothes the best we could and surprisingly my camera, though damp inside its case, was working. Too bad we can't say the same for Dave's expensive camera! We figure it's ruined. He was also wearing his Blackberry for work but surprisingly, this morning, it was working! Maybe we'll get lucky with the camera once it's dried out. (doubtful)
As we talked about the incident, I was surprised that Madison was wet. I thought that she had managed to stay in the canoe while Dave & I were taking our unexpected swim. Everyone else told me that she had indeed been in the water just like us. Not one of them could tell you that they had seen her get back into the canoethough! She was wearing her life jacket which is what saved her, that and the Hand of God. It was as if He just scooped her out of the water and plunked her right back into the canoe. I mean, how could a 4 year-old have the arm strength and the knowledge of how to climb back into a canoe? We were so thankful that a tragedy had been averted!
Alicia had brought a change of clothes for each of the girls so at least Madison was able to be dry. She was amazingly calm and just climbed right back into our canoe as we headed for camp. As I look back, she didn't cry a single tear, cling to Alicia our cry to be with her parents, she was incredible! Dave & knew we had to get back before the sun started going down or else we were in serious trouble. He & I booked it, taking a serious lead in our quest to stay reasonably warm. The incident happened around 3:30PM and we got back to the canoe rental around 4:30PM.
The first order of business was to change into dry clothes which we did, Forunately, I had worn my tennis shoes on the drive out so I had dry shoes to wear, Dave had only worn his hiking boots, which were soaking wet. After everyone was settled I made queso for chips as well as chili-mac and salad. We roasted marshmallows over the campfire and rehashed the days events. We played 2 games of Farkel and called it a night at 10PM. We all slept pretty soundly that night.
The decision was made that we would head out earlier than originally intended because Dave was going to have to replace his glasses. He has a Leadership Meeting today with a power point presentation and can't see for squat w/o his glasses. We got home by noon yesterday, unloaded everything and after a warm shower, he headed down for an eye appointment and some new glasses.
It was quite an eventful weekend, an expensive weekend as it turns out for us. Dave was initially unhappy about his camera but he's not even upset about it now. In the large scheme of things, it's only stuff! We are so thankful that Madison was safe & sound. The ramifications of "what if" are too horrible to even bear! We are so thankful that God was in control and took care of her. We just know that HIS hands were there, looking out for her and keeping her from harm!!
http://www.tpwd.state.tx.us/spdest/findadest/parks/caddo_lake/
Originally this trip was intended for the 5 families in our Life Group but only the Davis' and their 4 year-old twins, Madison & Ashley were able to come.
The weather forecast was for sunny skies and highs in the 50's & 60's for Sat & Sunday and lows in the 30's and 40's for Friday night and Sat night. We decided that the boys could have their own tent which would be more fun for them.We got there, set up camp and had a wonderful dinner prepared by Mike & Alicia, who had arrived earlier in that day. We had our usual campfire and chatted and then turned into our nice, warm sleeping bags.
Sat morning I made hot chocolate and hot cider along with Breakfast Burritos. The decision was made to rent canoes and take a picnic lunch with us while we were out for the day. The lake is fed by a river system so we would paddle a 10 mile round trip course. We let the boys have their own canoe, Dave & I started out with Ashley in our canoe and Mike & Alicia had Madison in theirs.
The area where our campsite was, is right on a bayou like area. It had the really tall cypress trees with spanish moss hanging down from them, touching the water. It was cool and somewhat eery to look at. Friday night we were awakened by wolves howling and we had teased the boys earlier in the evening that Swamp Thing was going to come out of the bayou sometime after they had went to bed. This made for some interesting scenery as we paddled our canoes.
It wasn't long before we entered the river system and paddled along it. We passed homes, probably vacation and retirement cabins for quite a ways. Eventually we took a channel off of the river and paddled through more bayou country. It was a really nice visual experience, very pristine and primitive. I could picture the Caddo Indians as they used these waters to navigate through their lands hundred of years ago. We saw herons and I spotted a beaver lodge with 4 beavers sitting inside. They actually allowed us to get pretty close to them so we could take pictures.
We found a "beach" area and decided to stop for our lunch. We got out and stretched, ate and just relaxed a while. Dave & I traded off and took Madison in our canoe as we headed back out. We paddled along and as we looked back to see how the boys were doing as well as Mike & Alicia, we had to laugh that Ashley had fallen peacefully asleep lying there in the middle of their canoe. Both girls had been enjoying themselves looking at the scenery and going from one side to the other putting their hands in the water. I had even joked to Dave when we had Ashley that she was probably the kink of kid who like to rock the cage on the ferris wheel!
We eventually came back to the river and headed back towards our camping area. Then the HAND OF GOD happened! I was in the front of the canoe, Dave in the back, steering and being the "weight adjuster". I was paddling the canoe and the next thing I knew I was falling into the water! I don't remember yelling and as quickly as it happened, I also felt like it was playing out in slow-motion! I went into the water, which was very cold and I remember the shock of suddenly being thrown in. Instantly what was running through my mind was "What did I do, to end up in the water?" As I broke the surface, I was sputtering and coughing. I looked over and saw that Dave was in the water as well and I immediately thought, "Uh oh, this is really bad if he is in the water too!" I was wearing my life jacket but I hadn't buckled it (stupid I know). It stayed on even though I felt it loose and brushing against me. I was wearing a sweater, jeans and hiking boots so I had a lot of weight pulling on me. I looked back and could see that Madison was in the canoe so I felt relieved about that. I was reaching for Charlie and Tyler's canoe so I wouldn't have to tread water so much. I told them just to paddle to shore and not try and pull me in to their canoe. In the meantime, Dave had managed to pull himself back into our canoe and was paddling to shore as well. Mike had retrieved some of our stuff that was floating. Unfortunately for Dave his glasses didn't float and are somewhere in the bottom of that river!
As we got to shore, I was feeling less shocked and was less anxious. We drug the canoe ashore and dumped all the water from inside it. We wrung the water out of our clothes the best we could and surprisingly my camera, though damp inside its case, was working. Too bad we can't say the same for Dave's expensive camera! We figure it's ruined. He was also wearing his Blackberry for work but surprisingly, this morning, it was working! Maybe we'll get lucky with the camera once it's dried out. (doubtful)
As we talked about the incident, I was surprised that Madison was wet. I thought that she had managed to stay in the canoe while Dave & I were taking our unexpected swim. Everyone else told me that she had indeed been in the water just like us. Not one of them could tell you that they had seen her get back into the canoethough! She was wearing her life jacket which is what saved her, that and the Hand of God. It was as if He just scooped her out of the water and plunked her right back into the canoe. I mean, how could a 4 year-old have the arm strength and the knowledge of how to climb back into a canoe? We were so thankful that a tragedy had been averted!
Alicia had brought a change of clothes for each of the girls so at least Madison was able to be dry. She was amazingly calm and just climbed right back into our canoe as we headed for camp. As I look back, she didn't cry a single tear, cling to Alicia our cry to be with her parents, she was incredible! Dave & knew we had to get back before the sun started going down or else we were in serious trouble. He & I booked it, taking a serious lead in our quest to stay reasonably warm. The incident happened around 3:30PM and we got back to the canoe rental around 4:30PM.
The first order of business was to change into dry clothes which we did, Forunately, I had worn my tennis shoes on the drive out so I had dry shoes to wear, Dave had only worn his hiking boots, which were soaking wet. After everyone was settled I made queso for chips as well as chili-mac and salad. We roasted marshmallows over the campfire and rehashed the days events. We played 2 games of Farkel and called it a night at 10PM. We all slept pretty soundly that night.
The decision was made that we would head out earlier than originally intended because Dave was going to have to replace his glasses. He has a Leadership Meeting today with a power point presentation and can't see for squat w/o his glasses. We got home by noon yesterday, unloaded everything and after a warm shower, he headed down for an eye appointment and some new glasses.
It was quite an eventful weekend, an expensive weekend as it turns out for us. Dave was initially unhappy about his camera but he's not even upset about it now. In the large scheme of things, it's only stuff! We are so thankful that Madison was safe & sound. The ramifications of "what if" are too horrible to even bear! We are so thankful that God was in control and took care of her. We just know that HIS hands were there, looking out for her and keeping her from harm!!
Friday, March 17, 2006
WHERE I AM NOW!
The last installment of the ITP saga has finally arrived! I am now 1 year post-op after having my spleen removed. I look back on this past year and feel like having the surgery was the right thing for me to do. My recovery time took close to 6 weeks rather than the 2-3 weeks I was told. I've learned that when it comes to health issues, my body does not follow normal patterns. I had some discomfort initially but about a week after I was home from the hospital, I started having back pain. I called the surgeon and he prescribed some painkillers for me. I had refused a prescription when I was released, I thought I was pretty tough after all I had been through. Maybe after all I had been through is the very reason why it made it so easy for me to take those drugs! He explained to me that in the past, these surgeries were very invasive, they would cut you wide open and afterwards you would hurt all over. Being done laproscopically, it's more localized and in having to seperate the spleen from off of the diaphram I would feel more localized pain, like in my back! I danced at Jessica's wedding 5 weeks later none the less (and paid the price for it, throwing out my back!)
My best friend Brenda came down for several days and kept me company, helped out, ran me to the TXCC for a platelet count and even pushed my fatt butt around Wal/Mart in a wheelchair!Now that's a true friend! It meant a lot to me to have her help me out. Jennifer called and sent flowers, Jessica was great as well, helping me to do some shopping and keeping me company. We had several meals brought in by friends and I was even up to attending our church's Easter service at the Superpit at UNT (University of North Texas).
My platelet count was not responding and after a couple of weeks, the Oncologist wanted me to go on some medication. I really think I believed that when I had finally made the decision to have this surgery, I would wake up and all would be right once again! Wrong-o! Just because other people have had good results, almost immediately after surgery, should have been my warning that my body would decide to be difficult! The nurse told me that I was the worst case of ITP they had ever experienced at the TXCC! Lucky me, I finally get to be a poster child for something and it had to be that!!
The nurse called in the prescription and a couple of days later it arrived in the mail. You know the old saying, "You can lead a horse to water but you can't make them drink"? I have a new saying, "You can give Connie drugs but you can't make her take them!" Yes, I resisted taking the drugs. I wanted to give my body plenty of opportunity to get its act together and start behaving as it was intended. My thoughts were, "How will I know if my platelets respond, if it's my body or the drugs?" I lied and told the nurse I was taking them.
Six weeks after my surgery and no rise in my platelet counts made me face the fact that I had been defeated and I was not through dealing with ITP yet. Very relunctantly I started on the 600mg a day of DANAZOL. I had such a bad attitude it wasn't even funny! I hit a low point in my faith.
I've always considered myself to have a strong faith. It's actually one of my spiritual gifts and in looking back I was probably prideful about it. I never understood people who waivered and whined about things. I learned a lesson in humility and compassion over this one. The other thing that happened was I questioned the value of prayer. I told Dave I felt like a beggar, in a long line of beggars, our hands stretched out. As God would go down the line, some people He would caress their hand, grant their wishes and the rest of us got our hands smacked! I remember thinking, "God's going to do what He wants and I can't change that!" I was so angry at God that I refused to pray or read the Word. I went to church and would just sit there, refusing to worship. I think I shook some people up when I had this crisis of faith.
Several interesting things happened over the course of last summer. First of all, Dave and I finally "had it out" over his comments about how I could've handled this whole thing better. I was NOT in the mood to hear that at this low point in my life. I warned him that he was walking on thin ice! That would never stop my man from saying what needs to be said! That's one of the things I love and admire about Dave, he tells me what I need to hear even when it's not pretty! His delivery could be a bit more compassionate at times but it's what I need and God knew that when HE gave Dave to me.
I sarcastically asked Dave, "Did I not do every single thing the doctors have ever asked me to do? I've had IV's, chemo, drugs, pain and even surgery! How dare you say I could've handled this better!" He just calmly told me that every time I had resisted and procrastinated, putting off whatever the doctors wanted me to do, (granted, eventually I would come around) were times that I had put myself at risk. He told me that I was his wife, best friend, lover, companion and mother of our children and I had been risking my health when I was being obstinate. This disorder wasn't just affecting me but others in my life that loved me, as well. Dave's not known for his touchy-feely side but after all of these years of being with him, it hit me what he was saying! I actually felt very cherished when this conversation was over. He could've just come out and said that though rather than saying I "could've handled it better!" But then that's how he is and I love him for it!
The other thing that came out of this "faith crisis" was I learned what trusting God and surrendering to God really means. I remember reading "The Purpose-Driven Life" by Rick Warren a couple of years ago. In his book he writes that one of our purposes is to worship God. It was funny how in spite of my anger at God and just sitting in church not participating, it didn't last too long. I would feel something welling up from deep down inside of me and I couldn't help but lift my hands and praise Him while we were singing worship songs. I remember so distinctly saying to God, "I don't get it! I don't understand anything about what I've been through and yet somehow, in the depths of my soul, I know that You do and that is going to have to be enough for me!"
I think that was the turning point for me. I was still angry and discouraged but little by little, God was breaking through my darkness. I don't know when it happened but I came to a point where I totally surrendered to God. I basically said, "You're sovereign and will do what's best for me. Help me to accept that, live with that and live above that, whatever it is. I trust you completely even though I don't know what the outcome is."
Some people think that Christianity is a crutch, something for weak people. Obviously they have never prayed a prayer like that. I certainly don't think of myself as a courageous person but it takes courage and strength to admit weakness and humility. It IS funny though, that not long after that, my platelet numbers began to respond. The Oncologist monitors me and every 2 weeks I go in to have my platelets and my liver levels checked. Over the last several months, I've gradually had my dosage lowered. I'll go in this Monday and if things look good, I'll be lowered to 200 mg a day. that's one-third the dosage from one year ago!
It's been a long journey these past 2 years. I've went through challenges and struggles. Some I have borne with great strength and others I have failed miserably! I am glad that God is looking for progress and not perfection because If that were the case, I'd have disappointed Him terribly. I know that we live in a fallen world and there will always be struggles, mountain top experiences and "Death Valley" lows. I look back and what I hear our Pastor say so often is true. "God loves us right where we are but He loves us too much to leave us there". God took me as His own when I was messed up. He's been gradually bringing me out of past hurts and habits and has shown me that there really is a better way to live. What a sad and miserable existence it would be to not have hope. God is a God of second chances, He offers hope, healing and wholeness.
Thank you God for all You've done and for all You're going to do!
My best friend Brenda came down for several days and kept me company, helped out, ran me to the TXCC for a platelet count and even pushed my fatt butt around Wal/Mart in a wheelchair!Now that's a true friend! It meant a lot to me to have her help me out. Jennifer called and sent flowers, Jessica was great as well, helping me to do some shopping and keeping me company. We had several meals brought in by friends and I was even up to attending our church's Easter service at the Superpit at UNT (University of North Texas).
My platelet count was not responding and after a couple of weeks, the Oncologist wanted me to go on some medication. I really think I believed that when I had finally made the decision to have this surgery, I would wake up and all would be right once again! Wrong-o! Just because other people have had good results, almost immediately after surgery, should have been my warning that my body would decide to be difficult! The nurse told me that I was the worst case of ITP they had ever experienced at the TXCC! Lucky me, I finally get to be a poster child for something and it had to be that!!
The nurse called in the prescription and a couple of days later it arrived in the mail. You know the old saying, "You can lead a horse to water but you can't make them drink"? I have a new saying, "You can give Connie drugs but you can't make her take them!" Yes, I resisted taking the drugs. I wanted to give my body plenty of opportunity to get its act together and start behaving as it was intended. My thoughts were, "How will I know if my platelets respond, if it's my body or the drugs?" I lied and told the nurse I was taking them.
Six weeks after my surgery and no rise in my platelet counts made me face the fact that I had been defeated and I was not through dealing with ITP yet. Very relunctantly I started on the 600mg a day of DANAZOL. I had such a bad attitude it wasn't even funny! I hit a low point in my faith.
I've always considered myself to have a strong faith. It's actually one of my spiritual gifts and in looking back I was probably prideful about it. I never understood people who waivered and whined about things. I learned a lesson in humility and compassion over this one. The other thing that happened was I questioned the value of prayer. I told Dave I felt like a beggar, in a long line of beggars, our hands stretched out. As God would go down the line, some people He would caress their hand, grant their wishes and the rest of us got our hands smacked! I remember thinking, "God's going to do what He wants and I can't change that!" I was so angry at God that I refused to pray or read the Word. I went to church and would just sit there, refusing to worship. I think I shook some people up when I had this crisis of faith.
Several interesting things happened over the course of last summer. First of all, Dave and I finally "had it out" over his comments about how I could've handled this whole thing better. I was NOT in the mood to hear that at this low point in my life. I warned him that he was walking on thin ice! That would never stop my man from saying what needs to be said! That's one of the things I love and admire about Dave, he tells me what I need to hear even when it's not pretty! His delivery could be a bit more compassionate at times but it's what I need and God knew that when HE gave Dave to me.
I sarcastically asked Dave, "Did I not do every single thing the doctors have ever asked me to do? I've had IV's, chemo, drugs, pain and even surgery! How dare you say I could've handled this better!" He just calmly told me that every time I had resisted and procrastinated, putting off whatever the doctors wanted me to do, (granted, eventually I would come around) were times that I had put myself at risk. He told me that I was his wife, best friend, lover, companion and mother of our children and I had been risking my health when I was being obstinate. This disorder wasn't just affecting me but others in my life that loved me, as well. Dave's not known for his touchy-feely side but after all of these years of being with him, it hit me what he was saying! I actually felt very cherished when this conversation was over. He could've just come out and said that though rather than saying I "could've handled it better!" But then that's how he is and I love him for it!
The other thing that came out of this "faith crisis" was I learned what trusting God and surrendering to God really means. I remember reading "The Purpose-Driven Life" by Rick Warren a couple of years ago. In his book he writes that one of our purposes is to worship God. It was funny how in spite of my anger at God and just sitting in church not participating, it didn't last too long. I would feel something welling up from deep down inside of me and I couldn't help but lift my hands and praise Him while we were singing worship songs. I remember so distinctly saying to God, "I don't get it! I don't understand anything about what I've been through and yet somehow, in the depths of my soul, I know that You do and that is going to have to be enough for me!"
I think that was the turning point for me. I was still angry and discouraged but little by little, God was breaking through my darkness. I don't know when it happened but I came to a point where I totally surrendered to God. I basically said, "You're sovereign and will do what's best for me. Help me to accept that, live with that and live above that, whatever it is. I trust you completely even though I don't know what the outcome is."
Some people think that Christianity is a crutch, something for weak people. Obviously they have never prayed a prayer like that. I certainly don't think of myself as a courageous person but it takes courage and strength to admit weakness and humility. It IS funny though, that not long after that, my platelet numbers began to respond. The Oncologist monitors me and every 2 weeks I go in to have my platelets and my liver levels checked. Over the last several months, I've gradually had my dosage lowered. I'll go in this Monday and if things look good, I'll be lowered to 200 mg a day. that's one-third the dosage from one year ago!
It's been a long journey these past 2 years. I've went through challenges and struggles. Some I have borne with great strength and others I have failed miserably! I am glad that God is looking for progress and not perfection because If that were the case, I'd have disappointed Him terribly. I know that we live in a fallen world and there will always be struggles, mountain top experiences and "Death Valley" lows. I look back and what I hear our Pastor say so often is true. "God loves us right where we are but He loves us too much to leave us there". God took me as His own when I was messed up. He's been gradually bringing me out of past hurts and habits and has shown me that there really is a better way to live. What a sad and miserable existence it would be to not have hope. God is a God of second chances, He offers hope, healing and wholeness.
Thank you God for all You've done and for all You're going to do!
Thursday, March 16, 2006
SURGERY!
After the holidays , I decided to end my self-imposed exile from the Texas Cancer Center. I told Dave that I should at least meet with the surgeon, listen to what he had to say and then make an informed decision. My Oncologist referred me to Dr Charney who is also the Chief of Surgery at Denton Regional Medical Center. He is the Surgeon who installs a great percentage of "ports" for patients receiving chemo treatment. (By the way, my Mother-in-Law is going in to have hers put in so she can begin her chemo next week for her Non-Hodgkins Lymphoma).
Dr Charney really set my mind at ease. He explained how the spleen filters your blood and how it will signal the immune system to destroy foreign antibodies it detects in your blood. Unfortunately, my spleen is mixed up and thinks that my platelets are foreign and a threat to my body. In theory, you remove the spleen, you remove the problem. What I didn't know is that some people have small "reserve" spleens that can grow once the primary spleen is removed and you have the potential for the same problem all over again! He showed me how he performs the surgery and how he thought he should be able to do it laproscopically. He would only make 5 small incisions and take it out in sections rather than gutting me like they used to do in days of old. I went home and mulled over all he had told me.
I decided to go ahead and have it done after all. The one fact that convinced me to proceed with the surgery was when Dr. Charney
explained to me that in all liklihood, my spleen was enlarged and it would be better to have it removed now while it was managable, rather than later when it was grossly enlarged or had ruptured! It made good common sense when he told me that. Dave & I went back in and he went through more details and set the date for Tuesday March 8th, 2005. I was told that my time in the hospital would be 2-3 days and recovery time would probably be 2-3 weeks. Jessica had a Bridal Shower back home in St Charles the same day as Alyson's 1st birthday, Feb 26th, 2005. The wedding date was set for April 16th. I knew I wanted it done early in March so I could be in good shape to enjoy the wedding.
Part of my preparation for the surgery was to have plenty of platelets on hand to control the bleeding issues I could possibly have. The other part was to pump my body full of its own platelets so that I had a really good count going in. I went in to the TXCC a week before the surgery for the first of 4 consecutive IVIG drips. By Friday, the 4th day I had a moderate headache that wouldn't go away. By Sunday I was in the worst pain I've ever experienced. This was worse than the 4 times I had experienced natural childbirth with no drugs! It was so bad by Sunday night that I got up at 1AM and started banging my head on the floor in the living room to try and get some relief. I eventually had to wake up Dave and ask him to take me to the ER which he did. I was given some pain killers which allowed me to sleep and I was sent home. Monday morning, March 7th, I still had a headache and went in to the TXCC for a platelet count. While I was there, the headache got much worse and my Oncologist had me admitted to the hospital.
I remember sitting there going through the never-ending paperwork (remember you don't do anything until that paperwork is completed) and the lady turned off all the lights in the room except for a really small desk light because I was in such agony! I was eventually admitted and the Neurologist scheduled me for an MRI. I remember waiting to go in and throwing up all over the blanket while I sat in the wheelchair. The attendent was so nice to me and wasn't grossed out at all. Like I would've cared at that point what he thought! I had to lie still which wasn't a problem because I didn't want to move my head at all. Finally when it was done, I was given some pain medication. Needless to say, the surgery had to be postponed until they figured out what my problem was.
The Neurologist diagnosed me with Anaseptic Meningitis. It mimics all the systems of Spinal Meningitis but is caused by a drug reaction rather than a bacterial infection. The surgery was moved to Thursday, March 10th and I discharged from the hopital on the 8th.
The morning of the 10th, Dave took me to the hospital for my surgery. After they did another platelet count I felt like I was doing the right thing. On Monday before I was admitted for the Anaseptic Meningitis, The TXCC told me my platelets were 697,000. Just 3 days later, the morning of my surgery they had dropped to less than half that amount. My spleen was working overtime! The last thing I remember was lying on the table and counting all the way back to 98!
I woke up later on and Dave told me that everything went fine.Dr
Charney told him that my spleen was 2-3 times enlarged and it was a good thing I got it out before it got any bigger. I had the tube removed that runs from your nose down the back of your throat to your stomach. I looked forward to putting this behind me and moving ahead.
Since my body is totally uncooperative, I had a set back in the hospital 2 days after my surgery. Instead of getting ready to go home, I started running a fever and had the chills really bad. After piling on 4 heated blankets on me, Dr Charney ordered me to have x-rays done. I was barely coherent but I do remember sitting in the wheelchair and being told I had to get out of it, sit down in this other chair while they did the x-rays. I was hurting so bad, was dizzy and disoriented and just wanted to be left alone. I did what they asked of me and was relieved when it was all over. It seemed like an eternity before I was taken back to my room. Little did I realize that the fun hadn't even started yet!
Throughout that day, everytime the nurse would come in, she'd leave my door open. I would have to call them and ask them to come back and close it. Normally that would seem like I'm being high-maintainance but I had a good reason for my request. The man reccoperating from knee surgery accross the hall from me was having a fiesta in his room! There were a ton of visitors and they were having the best time, being loud. His wife brought their baby with her (they were there for hours) and the baby cried and cried and cried! It was really starting to get to me!
The nurse came in and told me the results from my x-rays. I had gases building up in my stomach, causing my fever and chills and that they were going to have to reinsert the tube to draw off the gas. Now, the first time, I was knocked out for this, I didn't have that luxury this time. To this day, it is still one of the worst experiences of my life! She took the tube and goobered up the end of it with KY jelly. She snaked it up my nose and as it started coming down my throat I was instructed to swallow, swallow, swallow water from a glass. It was horrible to say the least! That evening and night were the longest of my life. I didn't dare move my head because even the slightest movement of the tube in my throat made me gag. Forget about sleeping because you are incredibly uncomfortable. During this time while you're lying on your back, the "sleeves" that they put around your legs that inflate every 45 seconds and then deflate to make sure you don't get blood clots, is going on. I watched "Gladiator" on late night TV, then I made the mistake of watching "The Man In The Iron Mask". Just wonderful, watching a movie about a guy being trapped inside this mask! I shared yesterday about how I am a closet claustrophobic and I felt trapped as well, unable to move! Finally when that was over I watched "Karate Kid 3". When that was over it was around 4AM. I was feeling better even though I couldn't move. I sat there watching the clock waiting....
Around 5:30 they come in to take some blood, take your temperature etc. I was waiting for rounds which sometmes start at 7AM. Then it dawned on me, "This is Sunday!!!!Oh my gosh, he's not going to be here for a long time yet!!" Finally, he came in around 11AM and looked me over. I asked him with my raspy voice if I could get that awful tube out. He seemed to be pleased with how I was doing and gave the okay. It is a pretty disgusting feeling having that tube go backwards throughout your body. I gagged the whole time but was I thrilled to be done with that!
He had them bring me something to eat and told me to try and walk around some, while pushing my IV pole. Over the next 2 days, I walked the floor every chance I got! In spite of how badly I had felt during those 6 days, everytime a nurse or an aide had come into my room and did anything for me, I always thanked them for taking care of me. I even found the little nurse who stuck that awful tube down my throat. I told her I was sorry if I had made her job difficult. She acted surprised to hear me say that and told me how she hated that part of her job. I thanked her for doing her job and how it had helped me to feel better. I'm sure they don't hear that very often.
At last, the day arrived and I got sprung from the hospital. I was going home!
To be continued...
Dr Charney really set my mind at ease. He explained how the spleen filters your blood and how it will signal the immune system to destroy foreign antibodies it detects in your blood. Unfortunately, my spleen is mixed up and thinks that my platelets are foreign and a threat to my body. In theory, you remove the spleen, you remove the problem. What I didn't know is that some people have small "reserve" spleens that can grow once the primary spleen is removed and you have the potential for the same problem all over again! He showed me how he performs the surgery and how he thought he should be able to do it laproscopically. He would only make 5 small incisions and take it out in sections rather than gutting me like they used to do in days of old. I went home and mulled over all he had told me.
I decided to go ahead and have it done after all. The one fact that convinced me to proceed with the surgery was when Dr. Charney
explained to me that in all liklihood, my spleen was enlarged and it would be better to have it removed now while it was managable, rather than later when it was grossly enlarged or had ruptured! It made good common sense when he told me that. Dave & I went back in and he went through more details and set the date for Tuesday March 8th, 2005. I was told that my time in the hospital would be 2-3 days and recovery time would probably be 2-3 weeks. Jessica had a Bridal Shower back home in St Charles the same day as Alyson's 1st birthday, Feb 26th, 2005. The wedding date was set for April 16th. I knew I wanted it done early in March so I could be in good shape to enjoy the wedding.
Part of my preparation for the surgery was to have plenty of platelets on hand to control the bleeding issues I could possibly have. The other part was to pump my body full of its own platelets so that I had a really good count going in. I went in to the TXCC a week before the surgery for the first of 4 consecutive IVIG drips. By Friday, the 4th day I had a moderate headache that wouldn't go away. By Sunday I was in the worst pain I've ever experienced. This was worse than the 4 times I had experienced natural childbirth with no drugs! It was so bad by Sunday night that I got up at 1AM and started banging my head on the floor in the living room to try and get some relief. I eventually had to wake up Dave and ask him to take me to the ER which he did. I was given some pain killers which allowed me to sleep and I was sent home. Monday morning, March 7th, I still had a headache and went in to the TXCC for a platelet count. While I was there, the headache got much worse and my Oncologist had me admitted to the hospital.
I remember sitting there going through the never-ending paperwork (remember you don't do anything until that paperwork is completed) and the lady turned off all the lights in the room except for a really small desk light because I was in such agony! I was eventually admitted and the Neurologist scheduled me for an MRI. I remember waiting to go in and throwing up all over the blanket while I sat in the wheelchair. The attendent was so nice to me and wasn't grossed out at all. Like I would've cared at that point what he thought! I had to lie still which wasn't a problem because I didn't want to move my head at all. Finally when it was done, I was given some pain medication. Needless to say, the surgery had to be postponed until they figured out what my problem was.
The Neurologist diagnosed me with Anaseptic Meningitis. It mimics all the systems of Spinal Meningitis but is caused by a drug reaction rather than a bacterial infection. The surgery was moved to Thursday, March 10th and I discharged from the hopital on the 8th.
The morning of the 10th, Dave took me to the hospital for my surgery. After they did another platelet count I felt like I was doing the right thing. On Monday before I was admitted for the Anaseptic Meningitis, The TXCC told me my platelets were 697,000. Just 3 days later, the morning of my surgery they had dropped to less than half that amount. My spleen was working overtime! The last thing I remember was lying on the table and counting all the way back to 98!
I woke up later on and Dave told me that everything went fine.Dr
Charney told him that my spleen was 2-3 times enlarged and it was a good thing I got it out before it got any bigger. I had the tube removed that runs from your nose down the back of your throat to your stomach. I looked forward to putting this behind me and moving ahead.
Since my body is totally uncooperative, I had a set back in the hospital 2 days after my surgery. Instead of getting ready to go home, I started running a fever and had the chills really bad. After piling on 4 heated blankets on me, Dr Charney ordered me to have x-rays done. I was barely coherent but I do remember sitting in the wheelchair and being told I had to get out of it, sit down in this other chair while they did the x-rays. I was hurting so bad, was dizzy and disoriented and just wanted to be left alone. I did what they asked of me and was relieved when it was all over. It seemed like an eternity before I was taken back to my room. Little did I realize that the fun hadn't even started yet!
Throughout that day, everytime the nurse would come in, she'd leave my door open. I would have to call them and ask them to come back and close it. Normally that would seem like I'm being high-maintainance but I had a good reason for my request. The man reccoperating from knee surgery accross the hall from me was having a fiesta in his room! There were a ton of visitors and they were having the best time, being loud. His wife brought their baby with her (they were there for hours) and the baby cried and cried and cried! It was really starting to get to me!
The nurse came in and told me the results from my x-rays. I had gases building up in my stomach, causing my fever and chills and that they were going to have to reinsert the tube to draw off the gas. Now, the first time, I was knocked out for this, I didn't have that luxury this time. To this day, it is still one of the worst experiences of my life! She took the tube and goobered up the end of it with KY jelly. She snaked it up my nose and as it started coming down my throat I was instructed to swallow, swallow, swallow water from a glass. It was horrible to say the least! That evening and night were the longest of my life. I didn't dare move my head because even the slightest movement of the tube in my throat made me gag. Forget about sleeping because you are incredibly uncomfortable. During this time while you're lying on your back, the "sleeves" that they put around your legs that inflate every 45 seconds and then deflate to make sure you don't get blood clots, is going on. I watched "Gladiator" on late night TV, then I made the mistake of watching "The Man In The Iron Mask". Just wonderful, watching a movie about a guy being trapped inside this mask! I shared yesterday about how I am a closet claustrophobic and I felt trapped as well, unable to move! Finally when that was over I watched "Karate Kid 3". When that was over it was around 4AM. I was feeling better even though I couldn't move. I sat there watching the clock waiting....
Around 5:30 they come in to take some blood, take your temperature etc. I was waiting for rounds which sometmes start at 7AM. Then it dawned on me, "This is Sunday!!!!Oh my gosh, he's not going to be here for a long time yet!!" Finally, he came in around 11AM and looked me over. I asked him with my raspy voice if I could get that awful tube out. He seemed to be pleased with how I was doing and gave the okay. It is a pretty disgusting feeling having that tube go backwards throughout your body. I gagged the whole time but was I thrilled to be done with that!
He had them bring me something to eat and told me to try and walk around some, while pushing my IV pole. Over the next 2 days, I walked the floor every chance I got! In spite of how badly I had felt during those 6 days, everytime a nurse or an aide had come into my room and did anything for me, I always thanked them for taking care of me. I even found the little nurse who stuck that awful tube down my throat. I told her I was sorry if I had made her job difficult. She acted surprised to hear me say that and told me how she hated that part of her job. I thanked her for doing her job and how it had helped me to feel better. I'm sure they don't hear that very often.
At last, the day arrived and I got sprung from the hospital. I was going home!
To be continued...
Wednesday, March 15, 2006
THE DIAGNOSIS & TREATMENT
Finally the waiting was over and the call came to us from the Texas Cancer Center to meet with the Oncologist for the results of my bone marrow biopsy. Dave and I went in and received the good news that I did not have cancer. You would think that my reaction would've been more jubliant but I had had such peace throughout this ordeal that my reaction was pretty low key. Dr Naga explained to us that it looked like I had this auto-immune disorder called ITP. In all honesty, this didn't surprise Dave because he had been on the internet spending time looking up and reading anything he could find on low blood platelets. In fact, he had gone so far as to tell me before hand that he sincerely thought that I had ITP and not cancer.
Now, I don't know how it is for other people but my immediate thought was, "Okay, give me some medication and let me be on my merry way!" I believe we have become a society that expects immediate answers to our problems. We want a microwave ending, not a crock pot one. We have become so accustom to hearing about the advances of medicine and drugs that we automatically think we're going to be fixed right away. I remember hearing about the advances in heart-bypass surgery and taking for granted the successful outcomes. It wasn't until my beloved stepdad POP, had his major heart attack and subsequent quintuple bypass surgery that it hit home. I wanted to tell all those people who were saying with good intentions that he'd be just fine, "Hey, this is MY Pop, not just some guy on the street!!" Funny thing reality, it has a way of keeping us grounded!
Dr Naga prescribed a daily dosage of 80mg of Prednisone (a nasty steroid with horrific side effects) in conjunction with a drug drip called IVIG. IVIG is an intervenous Immuno-Globulin drug designed to boost the platelets. Unfortunately for me it was a temporary fix for my blood clotting issues. I mentioned before about the Infusion Room at the TXCC. I also mentioned how routine their jobs are for the nurses over there. No one told me that I could get up and use the bathroom, to push my IV pole with me. In fact, no one ever told me where the bathroom was! No one told me to bring my lunch or to have someone bring me something to eat. A typical drip for me would take 4-6 hours depending on how cooperative my veins were. That's a long time to not go potty! When I was done with my first drip I exploded out of my chair and begged the nurse to tell me where the bathroom was. She felt really bad that I had been in the dark that whole time. Hello! Maybe they should just assume when they see a patient's chart for the first time that they are completely clueless!!
Before the drip I would have Benadryl injected into the IV and could count on a 30 minute nap.I always referred to this as my Benadryl Coma. The IVIG was frozen when I was in the hospital so it took a long time for it to thaw out. At the TXCC, it was mixed and ready to go before I came back to the Infusion Room. It was in a large glass bottle and it looked like it would take forever to drip into me. I'll admit that once I had been there a while, I would get up, go to the bathroom and actually open the drip a bit so it would flow faster. I know that some people would probably jump my butt for that but they aren't the ones forced to sit for hours on end, sometimes a couple of times a week to complete this process.
I remember sitting in my chair and looking around the room. A lot of people became very familiar faces over time. I remember seeing all different kinds of people getting chemo. There was the handsome, young college student. There was the young, maried girl, so petite that you thought the needles would come through on the other side. There was the Mexican lady who spoke no English and depended on her daughter to translate. There was the young mother of 2 pre-K boys from England who was in weekly for her chemo. The one that pricked my heart the most was the mother who was getting chemo and her teenage daughter who sat by her side throughout the process. The daughter looked to be the same age as my youngest daughter, Laura Lou. I thought of how this girl should be enjoying this time of her life, not watching her mom struggle through cancer treatment. There were of course older people who made up the majority of the patients back there.
I would most times interact with the people around me but there were some days when I thought, "If I have to hear about the drugs, bowel habits and side effects of these people one more time, I'm going to scream!!" It was those days that I would read or close my eyes and pretend to be asleep. I ALWAYS remembered though that I was the lucky one. I wasn't sitting there with a port in my chest to have blood drawn or drugs administered through it. I wasn't the one who had these chemical poisins injected into my blood stream to try and kill off this devastating disease. I wasn't the one with the small fannypack around my waist that held a pump so that the drugs could continue being pumped in after I was out of there. (This is for my stepsister, Vonnie who is currently undergoing all of this with her treatment for colon cancer). Yes, I am the lucky one!
The side effects of the steroids were worse than any symptoms of the disorder. It's funny but people would ask me all the time how I felt. Did I notice anything different before this disorder surfaced? I would always tell them the same thing. I felt like I always did. I don't know if it was such a gradual downhill slide that I became used to it and adjusted myself without ever knowing it. Maybe I am one of those people who is able to persevere in spite of things. I don't know. I will tell you that throughout all of my drug treatments, side effects and hospitalizations over the 9 month process, I can count on one hand the number of times I actually had to cancel working for a customer. I am not Wonder Woman because many times I felt like I had been run over by a train. I think I wanted to show this disorder that I was in control and that I could still be "normal" in spite of it all.
Throughout that summer of 2004, I was on the Prednisone and doing the IVIG drips. two weeks before we were scheduled to go on our big family vacation to Yellowstone, my platelets plunged to 2,000 and I had to be hospitalized. The Oncologist pumped me up before we left and told me to be very careful, not to get hurt. I was thrilled to get out of there even for just 2 weeks! The side effects of the Prednisone, gave me a lot of weight gain but the worst was the aching in my joints. My knees, hips and shoulders felt it the worst. At night, I would lie in bed and want to cry because I hurt so bad. My shoulders felt like someone was hanging 100 pound weights off my hands. I was determined that I was going to have fun on this vacaton regardless of my medical condition. I felt every mile we walked in Yellowstone. My greatest accomplishment however, was standing on top of Mt Washburn 2 weeks after my hospital stay. I felt like I had climbed Mt Everest!! I had to miss out on the Osprey Falls hike because I was physically unable to hack it. It was made up to me though when Dave & I hiked the Osprey Falls trail with the Bunson Peak trail, just the 2 of us this past September in Yellowstone.
Eventually it was obvious that the Prednisone was not working. I was actually relieved to hear that. Since it is a steroid you can't just stop taking them, you have to be weaned off them gradually. Dr Naga decided to try the drug WinRho on me. This is another drug in the arsenal of treating ITP. Unfortunately for me it didn't work either. This was the first time I've ever experienced a drug reaction. I am a closet claustrophobic. Most people don't know that the thought of spelunking (cave exploring) gives me the willies. My biggest fear is to be smothered or closed in. When they first administered WinRho to me, they left a bell on the table next to me. This was to notify the nurse if I was having a reaction. I "pe-shawed" the thought of that and just let it drip. It wasn't too long when I felt the need to start clearing my throat and swallowing. It didn't dawn on me that I was showing the first signs of a drug reaction. Before long, I was wheezing, swallowing, sucking in air and clanging on that bell like I was in a marching band! Immediately they stopped the drug, checked with the Oncologist and injected a steroid to counteract the reaction. Once I was back to normal, they started it up again. In subsequent drips, I had more Benadryl and some other drug before they began dripping it to prevent another reaction. That was extremely scary because I felt like I had been buried alive!
When the WinRho proved ineffective Dr Naga asked me to consider taking Rituxin. Rituxin is and it isn't, a chemo drug. I don't understand that but take their word for it. It's not a full blown chemo drug but it does have some of the side effects of chemo. After the 3rd treatment I started seeing hair in the shower drain. This really unnerved me and I got to the point where I hated the thought of washing my hair for fear of how much was falling out! At one point, Dave was out of town and I was so upset that I couldn't make myself go to our Life Group. I was so depressed that I sat around and cried, feeling sorry for myself. The day I went in for the 4th and final treatment of Rituxin, my labwork showed no improvement of my platelets. My veins were being totally uncooperative, it had become more and more difficult to find a working vein, to the point where the drips would just come to a dead stop. After 3 hours and not even half way through, I said, "That's it! Take it out, I'm done!" Done I was, I took a self-imposed break from the TXCC for a month. My Oncologist's nurse was calling me all the time, leaving me messages to please come in and I was stubbornly avoiding the whole thing!! Christmas 2004 came and went and I avoided the TXCC like the plague!
One of the possibilities that had been mentioned to us was to have my spleen removed. I was dead set against it, I wouldn't even consider it! The success rate was not too impressive and I wasn't ready to have myself cut open. Several family members are in the Medical field and were advising me that I should do it. I remember getting very angry! I told Dave that this had to be my decison, no one else could make this decision but me. He was so great to me during this whole ordeal, so loving and supportive. There were a couple of times though that I felt he was being critical of me. He told me that he thought I should've handled things differently. I interpreted that as him saying, "If it were me, I would've handled it so much better than you." This didn't go over to well as you can imagine. Dave and I are not screamers or even fighters for that matter. We tend to resolve our differences in a peaceful and calm manner most of the time. This was one issue though where I would get up and walk out of the room rather than give it to him with both barrels. I was in denial, discouraged and was sick of riding the roller-coaster. I had hit the wall!
To be continued...
Now, I don't know how it is for other people but my immediate thought was, "Okay, give me some medication and let me be on my merry way!" I believe we have become a society that expects immediate answers to our problems. We want a microwave ending, not a crock pot one. We have become so accustom to hearing about the advances of medicine and drugs that we automatically think we're going to be fixed right away. I remember hearing about the advances in heart-bypass surgery and taking for granted the successful outcomes. It wasn't until my beloved stepdad POP, had his major heart attack and subsequent quintuple bypass surgery that it hit home. I wanted to tell all those people who were saying with good intentions that he'd be just fine, "Hey, this is MY Pop, not just some guy on the street!!" Funny thing reality, it has a way of keeping us grounded!
Dr Naga prescribed a daily dosage of 80mg of Prednisone (a nasty steroid with horrific side effects) in conjunction with a drug drip called IVIG. IVIG is an intervenous Immuno-Globulin drug designed to boost the platelets. Unfortunately for me it was a temporary fix for my blood clotting issues. I mentioned before about the Infusion Room at the TXCC. I also mentioned how routine their jobs are for the nurses over there. No one told me that I could get up and use the bathroom, to push my IV pole with me. In fact, no one ever told me where the bathroom was! No one told me to bring my lunch or to have someone bring me something to eat. A typical drip for me would take 4-6 hours depending on how cooperative my veins were. That's a long time to not go potty! When I was done with my first drip I exploded out of my chair and begged the nurse to tell me where the bathroom was. She felt really bad that I had been in the dark that whole time. Hello! Maybe they should just assume when they see a patient's chart for the first time that they are completely clueless!!
Before the drip I would have Benadryl injected into the IV and could count on a 30 minute nap.I always referred to this as my Benadryl Coma. The IVIG was frozen when I was in the hospital so it took a long time for it to thaw out. At the TXCC, it was mixed and ready to go before I came back to the Infusion Room. It was in a large glass bottle and it looked like it would take forever to drip into me. I'll admit that once I had been there a while, I would get up, go to the bathroom and actually open the drip a bit so it would flow faster. I know that some people would probably jump my butt for that but they aren't the ones forced to sit for hours on end, sometimes a couple of times a week to complete this process.
I remember sitting in my chair and looking around the room. A lot of people became very familiar faces over time. I remember seeing all different kinds of people getting chemo. There was the handsome, young college student. There was the young, maried girl, so petite that you thought the needles would come through on the other side. There was the Mexican lady who spoke no English and depended on her daughter to translate. There was the young mother of 2 pre-K boys from England who was in weekly for her chemo. The one that pricked my heart the most was the mother who was getting chemo and her teenage daughter who sat by her side throughout the process. The daughter looked to be the same age as my youngest daughter, Laura Lou. I thought of how this girl should be enjoying this time of her life, not watching her mom struggle through cancer treatment. There were of course older people who made up the majority of the patients back there.
I would most times interact with the people around me but there were some days when I thought, "If I have to hear about the drugs, bowel habits and side effects of these people one more time, I'm going to scream!!" It was those days that I would read or close my eyes and pretend to be asleep. I ALWAYS remembered though that I was the lucky one. I wasn't sitting there with a port in my chest to have blood drawn or drugs administered through it. I wasn't the one who had these chemical poisins injected into my blood stream to try and kill off this devastating disease. I wasn't the one with the small fannypack around my waist that held a pump so that the drugs could continue being pumped in after I was out of there. (This is for my stepsister, Vonnie who is currently undergoing all of this with her treatment for colon cancer). Yes, I am the lucky one!
The side effects of the steroids were worse than any symptoms of the disorder. It's funny but people would ask me all the time how I felt. Did I notice anything different before this disorder surfaced? I would always tell them the same thing. I felt like I always did. I don't know if it was such a gradual downhill slide that I became used to it and adjusted myself without ever knowing it. Maybe I am one of those people who is able to persevere in spite of things. I don't know. I will tell you that throughout all of my drug treatments, side effects and hospitalizations over the 9 month process, I can count on one hand the number of times I actually had to cancel working for a customer. I am not Wonder Woman because many times I felt like I had been run over by a train. I think I wanted to show this disorder that I was in control and that I could still be "normal" in spite of it all.
Throughout that summer of 2004, I was on the Prednisone and doing the IVIG drips. two weeks before we were scheduled to go on our big family vacation to Yellowstone, my platelets plunged to 2,000 and I had to be hospitalized. The Oncologist pumped me up before we left and told me to be very careful, not to get hurt. I was thrilled to get out of there even for just 2 weeks! The side effects of the Prednisone, gave me a lot of weight gain but the worst was the aching in my joints. My knees, hips and shoulders felt it the worst. At night, I would lie in bed and want to cry because I hurt so bad. My shoulders felt like someone was hanging 100 pound weights off my hands. I was determined that I was going to have fun on this vacaton regardless of my medical condition. I felt every mile we walked in Yellowstone. My greatest accomplishment however, was standing on top of Mt Washburn 2 weeks after my hospital stay. I felt like I had climbed Mt Everest!! I had to miss out on the Osprey Falls hike because I was physically unable to hack it. It was made up to me though when Dave & I hiked the Osprey Falls trail with the Bunson Peak trail, just the 2 of us this past September in Yellowstone.
Eventually it was obvious that the Prednisone was not working. I was actually relieved to hear that. Since it is a steroid you can't just stop taking them, you have to be weaned off them gradually. Dr Naga decided to try the drug WinRho on me. This is another drug in the arsenal of treating ITP. Unfortunately for me it didn't work either. This was the first time I've ever experienced a drug reaction. I am a closet claustrophobic. Most people don't know that the thought of spelunking (cave exploring) gives me the willies. My biggest fear is to be smothered or closed in. When they first administered WinRho to me, they left a bell on the table next to me. This was to notify the nurse if I was having a reaction. I "pe-shawed" the thought of that and just let it drip. It wasn't too long when I felt the need to start clearing my throat and swallowing. It didn't dawn on me that I was showing the first signs of a drug reaction. Before long, I was wheezing, swallowing, sucking in air and clanging on that bell like I was in a marching band! Immediately they stopped the drug, checked with the Oncologist and injected a steroid to counteract the reaction. Once I was back to normal, they started it up again. In subsequent drips, I had more Benadryl and some other drug before they began dripping it to prevent another reaction. That was extremely scary because I felt like I had been buried alive!
When the WinRho proved ineffective Dr Naga asked me to consider taking Rituxin. Rituxin is and it isn't, a chemo drug. I don't understand that but take their word for it. It's not a full blown chemo drug but it does have some of the side effects of chemo. After the 3rd treatment I started seeing hair in the shower drain. This really unnerved me and I got to the point where I hated the thought of washing my hair for fear of how much was falling out! At one point, Dave was out of town and I was so upset that I couldn't make myself go to our Life Group. I was so depressed that I sat around and cried, feeling sorry for myself. The day I went in for the 4th and final treatment of Rituxin, my labwork showed no improvement of my platelets. My veins were being totally uncooperative, it had become more and more difficult to find a working vein, to the point where the drips would just come to a dead stop. After 3 hours and not even half way through, I said, "That's it! Take it out, I'm done!" Done I was, I took a self-imposed break from the TXCC for a month. My Oncologist's nurse was calling me all the time, leaving me messages to please come in and I was stubbornly avoiding the whole thing!! Christmas 2004 came and went and I avoided the TXCC like the plague!
One of the possibilities that had been mentioned to us was to have my spleen removed. I was dead set against it, I wouldn't even consider it! The success rate was not too impressive and I wasn't ready to have myself cut open. Several family members are in the Medical field and were advising me that I should do it. I remember getting very angry! I told Dave that this had to be my decison, no one else could make this decision but me. He was so great to me during this whole ordeal, so loving and supportive. There were a couple of times though that I felt he was being critical of me. He told me that he thought I should've handled things differently. I interpreted that as him saying, "If it were me, I would've handled it so much better than you." This didn't go over to well as you can imagine. Dave and I are not screamers or even fighters for that matter. We tend to resolve our differences in a peaceful and calm manner most of the time. This was one issue though where I would get up and walk out of the room rather than give it to him with both barrels. I was in denial, discouraged and was sick of riding the roller-coaster. I had hit the wall!
To be continued...
Saturday, March 11, 2006
THE WAITING GAME
I suppose I'm not any different than most people if I say I hate to wait for something. It's my human nature to want something and want it NOW! After the bone marrow biopsy we waited for 10 days to hear the results. I would be lying if I said the peace that I had felt, never waivered and I just sailed right through those 10 days. I had my moments, actually they were more than just moments, when my thoughts ran through the scenario of cancer and how it would affect my life and the lives of those who love me. Since I have been known to have a flair for the dramatic I even found myself thinking "what if" I have cancer and I die? How is this going to affect my children? How is Dave going to handle it? Are my parents going to be alright? I even remember thinking to myself that if I "actually do have cancer, I want to live my Christian life so that God could use it for HIS glory and for my children to be drawn closer to God rather than having them be alienated from HIM." Lest you think I am some super Christian, in the same breath I would pray, "But please God, don't let it be cancer because I don't want to suffer!"
I've always heard that our faith is strengthened during trials, that that's usually when we grow the most. Our character is not made when we go through trials, rather, the trials reveal our character, who we REALLY are deep down inside.
I was a young girl when my parents divorced and I didn't have much contact with my father. I saw him a couple of times a year but I always hungered for more. I was starving for a father's love. I had the love of my mother and my paternal grandmother during those lonely years. My grandmother's husband, "Grandpa Bud" was a mean man who would beat my grandmother when he was drunk, which was almost every day. I didn't have a positive father figure in my life. As an adult I can look back and see how that influenced and shaped me. I understand why I made the decisions and choices I did. It doesn't excuse them because I bear the full weight and responsibility of my actions. However, it's comforting to know that there was a reason why I was so stupid!
I was raised Catholic, went to Catholic grade school and high school and in my younger years attended Mass 6 days a week. I challenged the nuns at every turn always asking why we did things the way we did. I never got an answer that satisified me. Although my mother was Catholic, when I was 9 years old, we went to a Billy Graham Crusade. The invitation was given to come forward and accept Christ as your Savior and I ran down there. My mother came behind me and told the counselor that, "it was okay, we were already going to church". I often wonder how different my life might have been if I had been allowed to accept Christ at that point. I don't blame my Mom because in hindsight, I believe that God's timing was perfect. I feel like I had to go through all of the bad choices and consequences to appreciate the great love of God.
In Luke chapter 7 starting in verse 36, Jesus has gone to the home of a Pharisee to have dinner with him. While there, a woman who was known to be a prostitute comes in and washes his feet with her tears. The Pharisee scoffs and thinks that if Jesus were a real prophet, he would never let this sinful, unclean woman near him, let alone touch him. Knowing this, Jesus turns to Peter and tells him the story of 2 men who owed money, one owed a small amount, the other a large amount. Neither could repay their debt and so the moneylender forgave their debt. Jesus asks the question, "Who will love more? The one who owed a little or the one who owed a lot?" I see my past life and I realize the debt that Christ's death on the cross wiped clean. I pray every day that I would love more!
Loving Jesus was easy for me. I mean, who couldn't love HIM? He left everything, all the glories of heaven that are HIS alone and exchanged them for a life that ended in cruel suffering and death-all for my salvation! After accepting HIS sacrifice (as the only way to get to heaven) and turning the keys of my life over to HIM and letting HIM drive, my life has been so much more meaningful. I love HIM because HE first loved me and while I was still sinning and living a godless life, HE died for me! I've still made mistakes, lived selfishly at times and not always kept HIM in first place but HE'S always there with HIS arms opened wide, ready to take me back. Like I said, who couldn't love someone like that?
God on the other hand was more abstract. I felt like HE was out there somewhere, totally indifferent and distant. I know now that my perceptions of God were based on my dysfunctional childhood and the lack of my own father interacting with me. I had to unlearn what I thought about God and see HIM for who HE really is.
It was during this waiting period that I got to know who God the Father is. I don't know HIM fully and never really will comprehend, this side of heaven but I got to experience the love of the Father in ways I never knew existed. We were singing, "Just Sit With You" by Mercy Me on a Sunday morning. Dave was out of town and I was all by myself, the kids sitting off with their friends. When we sang,
"When I cannot feel,
when my wounds don't heal
Lord I humbly kneel,
hidden in You Lord,
You are my life so I don't mind to die
Just as long as I am hidden in You
If I could just sit with You a while,
if You could just hold me
Nothing could touch me though I'm wounded, though I die
If I could just sit with You a while,
I need You to hold me
Moment by moment,
'till forever passes by
When I know I’ve sinned
when I should have been
Crying out my God
and hidden in you
Lord I need you now,
more than I know how
So I humbly bow,
hidden in you
If I could just sit with You a while,
if You could just hold me
Nothing could touch me though I'm wounded, though I die
If I could just sit with You a while,
I need You to hold me
Moment by moment,
'till forever passes by."
Singing the words to this song it felt like I had been hit by a freight train! I saw myself sitting in my Heavenly Father's lap, his arms circling around me, comforting me and loving me. I heard HIS words saying that HE'S been there all the time for me, longing for me to come to HIM and experience HIS love for me. Since that day, I have never been the same!
If I had to go through this trial for me to understand the nature of my Heavenly Father, I would gladly and willingly go through it again! I received such mercy and grace from HIM that I have since been able to bury my past and move on. My biological father and I have a whole and healthy relationship at last. He became a Christian when I was 17 but I have held him at arm's length and been angry at him my whole life.
I look at what I have gained from having this disorder and can truly give thanks for going through it. I don't say "Thank you God that I got to suffer and be discouraged, angry and depressed." That would be fake and unrealistic. I give thanks for GOD's faithfulness and his healing me emotionally. I think that my emotional healing has been far more beneficial than an instaneous, miraculous healing. I believe God can and that HE does, perform miracles. I believe HE heals through the skills of doctors and medications that have been created. After all, it is a Creative God who places those gifts, talents and abilities within each of us uniquely created beings. I also believe that God sees the big picture, everything in it's entirety and that I had to learn that HE can be trusted to do what is right for me. For all that I've gained and learned, I truly give thanks. I also give thanks that the diagnosis 10 days later was NOT cancer. I have ITP.
To be continued...
I've always heard that our faith is strengthened during trials, that that's usually when we grow the most. Our character is not made when we go through trials, rather, the trials reveal our character, who we REALLY are deep down inside.
I was a young girl when my parents divorced and I didn't have much contact with my father. I saw him a couple of times a year but I always hungered for more. I was starving for a father's love. I had the love of my mother and my paternal grandmother during those lonely years. My grandmother's husband, "Grandpa Bud" was a mean man who would beat my grandmother when he was drunk, which was almost every day. I didn't have a positive father figure in my life. As an adult I can look back and see how that influenced and shaped me. I understand why I made the decisions and choices I did. It doesn't excuse them because I bear the full weight and responsibility of my actions. However, it's comforting to know that there was a reason why I was so stupid!
I was raised Catholic, went to Catholic grade school and high school and in my younger years attended Mass 6 days a week. I challenged the nuns at every turn always asking why we did things the way we did. I never got an answer that satisified me. Although my mother was Catholic, when I was 9 years old, we went to a Billy Graham Crusade. The invitation was given to come forward and accept Christ as your Savior and I ran down there. My mother came behind me and told the counselor that, "it was okay, we were already going to church". I often wonder how different my life might have been if I had been allowed to accept Christ at that point. I don't blame my Mom because in hindsight, I believe that God's timing was perfect. I feel like I had to go through all of the bad choices and consequences to appreciate the great love of God.
In Luke chapter 7 starting in verse 36, Jesus has gone to the home of a Pharisee to have dinner with him. While there, a woman who was known to be a prostitute comes in and washes his feet with her tears. The Pharisee scoffs and thinks that if Jesus were a real prophet, he would never let this sinful, unclean woman near him, let alone touch him. Knowing this, Jesus turns to Peter and tells him the story of 2 men who owed money, one owed a small amount, the other a large amount. Neither could repay their debt and so the moneylender forgave their debt. Jesus asks the question, "Who will love more? The one who owed a little or the one who owed a lot?" I see my past life and I realize the debt that Christ's death on the cross wiped clean. I pray every day that I would love more!
Loving Jesus was easy for me. I mean, who couldn't love HIM? He left everything, all the glories of heaven that are HIS alone and exchanged them for a life that ended in cruel suffering and death-all for my salvation! After accepting HIS sacrifice (as the only way to get to heaven) and turning the keys of my life over to HIM and letting HIM drive, my life has been so much more meaningful. I love HIM because HE first loved me and while I was still sinning and living a godless life, HE died for me! I've still made mistakes, lived selfishly at times and not always kept HIM in first place but HE'S always there with HIS arms opened wide, ready to take me back. Like I said, who couldn't love someone like that?
God on the other hand was more abstract. I felt like HE was out there somewhere, totally indifferent and distant. I know now that my perceptions of God were based on my dysfunctional childhood and the lack of my own father interacting with me. I had to unlearn what I thought about God and see HIM for who HE really is.
It was during this waiting period that I got to know who God the Father is. I don't know HIM fully and never really will comprehend, this side of heaven but I got to experience the love of the Father in ways I never knew existed. We were singing, "Just Sit With You" by Mercy Me on a Sunday morning. Dave was out of town and I was all by myself, the kids sitting off with their friends. When we sang,
"When I cannot feel,
when my wounds don't heal
Lord I humbly kneel,
hidden in You Lord,
You are my life so I don't mind to die
Just as long as I am hidden in You
If I could just sit with You a while,
if You could just hold me
Nothing could touch me though I'm wounded, though I die
If I could just sit with You a while,
I need You to hold me
Moment by moment,
'till forever passes by
When I know I’ve sinned
when I should have been
Crying out my God
and hidden in you
Lord I need you now,
more than I know how
So I humbly bow,
hidden in you
If I could just sit with You a while,
if You could just hold me
Nothing could touch me though I'm wounded, though I die
If I could just sit with You a while,
I need You to hold me
Moment by moment,
'till forever passes by."
Singing the words to this song it felt like I had been hit by a freight train! I saw myself sitting in my Heavenly Father's lap, his arms circling around me, comforting me and loving me. I heard HIS words saying that HE'S been there all the time for me, longing for me to come to HIM and experience HIS love for me. Since that day, I have never been the same!
If I had to go through this trial for me to understand the nature of my Heavenly Father, I would gladly and willingly go through it again! I received such mercy and grace from HIM that I have since been able to bury my past and move on. My biological father and I have a whole and healthy relationship at last. He became a Christian when I was 17 but I have held him at arm's length and been angry at him my whole life.
I look at what I have gained from having this disorder and can truly give thanks for going through it. I don't say "Thank you God that I got to suffer and be discouraged, angry and depressed." That would be fake and unrealistic. I give thanks for GOD's faithfulness and his healing me emotionally. I think that my emotional healing has been far more beneficial than an instaneous, miraculous healing. I believe God can and that HE does, perform miracles. I believe HE heals through the skills of doctors and medications that have been created. After all, it is a Creative God who places those gifts, talents and abilities within each of us uniquely created beings. I also believe that God sees the big picture, everything in it's entirety and that I had to learn that HE can be trusted to do what is right for me. For all that I've gained and learned, I truly give thanks. I also give thanks that the diagnosis 10 days later was NOT cancer. I have ITP.
To be continued...
Thursday, March 09, 2006
Tuesday, March 07, 2006
THE BONE MARROW BIOPSY
When this autoimmune disorder first made itself known in June of 2004, they didn't have a name for it. I had to undergo a bone marrow biopsy as a process of elimination. The weekend after my very first platelet transfusion, waiting for Monday when they would do it, was spent in deep prayer by both Dave & I. I decided to send out an e-mail to pretty much everyone in my address book asking them to pray for me and for my family. I also decided to keep a journal so I could record my thoughts and feelings. In looking back I mention in my journal its purpose and that if all goes well, I should only fill a few pages! That is really funny! If you had told me that 2 years later I would still be struggling under the weight of this, I would've been really discouraged!
First of all, I have to say that I do not understand how people who don't know Christ as their personal Savior and have the network and support system of other like-minded Believers ever get through trials and hardships. Immediately after my e-mail, I was flooded with love & support. I decided to print all of them out and include them in my journal writings. Anytime I started to feel sorry for myself, I was quickly reminded of how deeply loved I am by so many people!
The one thing we did not do was share all of this with our 3 youngest children. We felt that until we knew something definite it was pointless to scare them and have them all worked up. I really felt the need to focus my energies on myself and not have to try and provide comfort for the kids at that time.
Dave & spent the weekend praying about my biopsy and its subsequent results.The common theme of our prayer life through the years is how God almost always gives us answers individually and then when we come together and "compare notes" how identical they are! We both had this almost unreal sense of peace over the whole situation. I told Dave, "I don't know if that means the doctors will not find cancer or if it means that they will but God's going to walk us through this. I only know that I have no fear!"
Monday morning dawns and Dave goes with me to the Texas Cancer Center. My name is called and I go their lab and have blood drawn for a platelet count. After about 45 minutes my name is called once again and I go by myself to the INFUSION ROOM. In hindsight, I wish I had known I could have had Dave go with me. The one thing I will say is that the people at the Texas Cancer Center were really nice but I think they forget that for many people, this is a whole new world. I think they lose sight of how scary this is because it has become so routine for them.
I went into the INFUSION ROOM and wanted to cut & run! For others who are unfamiliar of what goes on in a place like this, the Infusion Room is where shots, chemo and treatments take place. Over the many hours I've spent at the TXCC I have been exposed to people from all walks of life whom cancer has decided to visit. The one thing I've learned about cancer is that it is no respector of persons! The Infusion Room has about 12 recliner type chairs and about a half dozen TV's mounted in the ceiling so you can pass your time. They play music, there are magazines to read and occasionally there is a volunteer from the American Cancer Society there who will bring you some juice or water, crackers or even a tootsie roll pop! These are good to keep your saliva juices flowing!
I was directed to a chair and told to take a seat and they would hook me up to an IV as soon as they could. I just sat there, soaking it all in. Looking back at my times in there, sometimes it's been a very depressing place and at other times there has been a family-like atmosphere. It all depends on what kind of a mood I'm in. The gal comes over and starts a saline solution on me. I say that so matter of fact when a lot of times, just finding a vein to start me up has been a pretty big challenge. After a short while, they inject a drug into the tubing to calm me down.
I'm escorted, along with my IV pole back to one of the examination rooms. I was asked to climb up on the table, pull my pants down pretty far exposing my big, white, shiny hiney and lie on my stomach. Dr Naga came in, told me that my platelets were low, only 16,000 and then she started mashing and pressing my hip area. I asked her if she wanted to give me a massage while she was at it and she just laughed.
My eyes grew quite large when I saw her pull out these really long needles and then she inserted them so she could deaden the bone. Yes, they really are very long! Once, she hit a nerve and my leg flopped like a fish out of water. Next she took an instrument that she inserted down to the bone so that she can pull out a plug of bone marrow. This whole process wasn't excruciatingly painful but it was VERY uncomfortable. That was it. I was told she should have the results back in 2-3 days and cover your butt back up please and she was gone.
After she left the nurse said that in all actuality, depending on my HMO, it would be up to 2 weeks before the results were in. 2 weeks! That's a long time to wait for news like this! They then asked me if I wanted Dave to come back to the room and naturally I said a resounding YES! He came back and we sat and talked about our vacation that was coming up and other stuff. I had been unhooked from the IV and they were just keeping an eye on me for a few more minutes. We were allowed to leave and stopped by the pharmacy on the way home for some iron supplements for me. I was becoming really nauseas and couldn't focus so I had to let him just pick whatever looked right to him. We headed home and started the waiting process.
To be continued...
First of all, I have to say that I do not understand how people who don't know Christ as their personal Savior and have the network and support system of other like-minded Believers ever get through trials and hardships. Immediately after my e-mail, I was flooded with love & support. I decided to print all of them out and include them in my journal writings. Anytime I started to feel sorry for myself, I was quickly reminded of how deeply loved I am by so many people!
The one thing we did not do was share all of this with our 3 youngest children. We felt that until we knew something definite it was pointless to scare them and have them all worked up. I really felt the need to focus my energies on myself and not have to try and provide comfort for the kids at that time.
Dave & spent the weekend praying about my biopsy and its subsequent results.The common theme of our prayer life through the years is how God almost always gives us answers individually and then when we come together and "compare notes" how identical they are! We both had this almost unreal sense of peace over the whole situation. I told Dave, "I don't know if that means the doctors will not find cancer or if it means that they will but God's going to walk us through this. I only know that I have no fear!"
Monday morning dawns and Dave goes with me to the Texas Cancer Center. My name is called and I go their lab and have blood drawn for a platelet count. After about 45 minutes my name is called once again and I go by myself to the INFUSION ROOM. In hindsight, I wish I had known I could have had Dave go with me. The one thing I will say is that the people at the Texas Cancer Center were really nice but I think they forget that for many people, this is a whole new world. I think they lose sight of how scary this is because it has become so routine for them.
I went into the INFUSION ROOM and wanted to cut & run! For others who are unfamiliar of what goes on in a place like this, the Infusion Room is where shots, chemo and treatments take place. Over the many hours I've spent at the TXCC I have been exposed to people from all walks of life whom cancer has decided to visit. The one thing I've learned about cancer is that it is no respector of persons! The Infusion Room has about 12 recliner type chairs and about a half dozen TV's mounted in the ceiling so you can pass your time. They play music, there are magazines to read and occasionally there is a volunteer from the American Cancer Society there who will bring you some juice or water, crackers or even a tootsie roll pop! These are good to keep your saliva juices flowing!
I was directed to a chair and told to take a seat and they would hook me up to an IV as soon as they could. I just sat there, soaking it all in. Looking back at my times in there, sometimes it's been a very depressing place and at other times there has been a family-like atmosphere. It all depends on what kind of a mood I'm in. The gal comes over and starts a saline solution on me. I say that so matter of fact when a lot of times, just finding a vein to start me up has been a pretty big challenge. After a short while, they inject a drug into the tubing to calm me down.
I'm escorted, along with my IV pole back to one of the examination rooms. I was asked to climb up on the table, pull my pants down pretty far exposing my big, white, shiny hiney and lie on my stomach. Dr Naga came in, told me that my platelets were low, only 16,000 and then she started mashing and pressing my hip area. I asked her if she wanted to give me a massage while she was at it and she just laughed.
My eyes grew quite large when I saw her pull out these really long needles and then she inserted them so she could deaden the bone. Yes, they really are very long! Once, she hit a nerve and my leg flopped like a fish out of water. Next she took an instrument that she inserted down to the bone so that she can pull out a plug of bone marrow. This whole process wasn't excruciatingly painful but it was VERY uncomfortable. That was it. I was told she should have the results back in 2-3 days and cover your butt back up please and she was gone.
After she left the nurse said that in all actuality, depending on my HMO, it would be up to 2 weeks before the results were in. 2 weeks! That's a long time to wait for news like this! They then asked me if I wanted Dave to come back to the room and naturally I said a resounding YES! He came back and we sat and talked about our vacation that was coming up and other stuff. I had been unhooked from the IV and they were just keeping an eye on me for a few more minutes. We were allowed to leave and stopped by the pharmacy on the way home for some iron supplements for me. I was becoming really nauseas and couldn't focus so I had to let him just pick whatever looked right to him. We headed home and started the waiting process.
To be continued...
Wednesday, March 01, 2006
WHAT EXACTLY IS ITP?
On my last blog entry I had a comment from a dad who has a beautiful 17 year-old daughter struggling with this chronic disorder. I've had many people look at me like I have lobsters growing out of my head when I mention that I have been dealing with ITP for nearly 2 years now. Since I have been asked about this SO many times I thought I'd take a trip down memory lane. I'd like to call this, "ITP 101" or "ITP for Dummies" (which really includes me as well) and get everyone up to speed about this little known disorder.
WHAT IS IT?
ITP or, idiopathic thrombocytopenic purpura, also known as immune thrombocytopenic purpura, is classified as an autoimmune disease. In an autoimmune disease the body mounts an attack toward one or more otherwise normal organ systems. In ITP, platelets are the target. They are marked as foreign by the immune system and eliminated in the spleen, or sometimes the liver. Platelets are those marvelous little things in our blood which allows it to clot. A normal range for blood platelets is 150,000 to 400,000 per, whatever they measure it in. For someone with ITP, our blood doesn't clot very well which lends us to all sorts of risks. There is the obvious severe bruising that happens whenever we bump into something, no matter how slight. I also take a very long time to heal from normal cuts and scrapes. At its extreme, there is a risk for bleeding in the brain leading to a stroke or if you have internal injuries say from a car accident, you could bleed to death. I wear a Medical Alert bracelet at all times in case I am unable to communicate to someone that I am at risk and need blood STAT (as they would say on *M*A*S*H).
ITP is characterized more by its description than the specific properties of the disease. It is the diagnosis when platelets are abnormally low and other diseases that could cause low platelets have been ruled out. Usually there is the presence of antiplatelet antibodies indicating that the body has decided to consider the platelets foreign. It attacks them with an antibody as it would bacteria. The body then does what it is programmed to do with bacteria: eliminate them. This is done in the spleen or liver.
ITP can present itself with small purple spots called petechiae in the mouth and legs, nose bleeds, and bleeding gums during normal dental care. Some people develop bruises on their arms and legs with no provocation. It is often accompanied by fatigue and sometimes depression. I got this clinical definition from the source listed here:
http://www.itppeople.com/aboutitp.htm
HOW DO YOU GET IT?
Well, that's the $64,000 question! Lots of theories all the way from the outlandish to the realistic. I'm not sure why my body suddenly decided to turn on itself and destroy my blood platelets. I had extensive blood work done when I was 40 and have been a blood donor up until 4 years ago and never once did this ever appear in the tests. It's safe to guess that I came down with this sometime after 2002. Looking back, I had a warning sign, when I developed a resistent infection on my left hand 2 years ago. I had cut myself and it got infected and took nearly 2 months to heal. Did my immune system, in trying to battle this infection become overly agressive and not know when to shut itself back down once I had finally healed? Is that why I have ITP? I can't really say and neither can the doctors.
IS IT CONTAGIOUS?
Uh, in a word, NO!
TREATMENT OF ITP
I've been poked & prodded, bruised & infused, been on more drugs and steroids than a pharmacy and ultimately had my spleen removed, all in order to get this disorder under control. There are some schools of thought to juice up vegetables and drink them. I don't know why you can't eat just eat carrots rather than liquifying them. I am currently on the drug DANAZOL and I take a handful of vitamins every day. Even that's tricky. Most people think Vitamin C is a good thing but not for someone like me who has an overly agressive immune system! The same goes for anything derived from fish oils. I take a Multi-vitamin, Iron, Calcium, Folic Acid, Vitamin B12 & Vitamin K. Now that my spleen has been removed I have to have a flu shot and a pnemonia shot every year!
HOW DID I FIND OUT I HAVE ITP?
That was interesting! I was doing the necessary preliminary paperwork and bloodwork at Denton Regional Medical Center for a minor, outpatient procedure performed by my OB/GYN. Within an hour My OB/GYN PERSONALLY called me and said,
"We have a problem with your labwork. I'd like you to see Dr. Nagabharava. Her nurse will call you to set up the appointment. Their address is, blah, blah, blah."
Um, okay. The nurse calls me on my cell, the appointment is set for the next day and that is the end of that conversation.
The next day finds myself, pulling into the parking lot of the address they've given me. Imagine my shock and fear when the lettering on the outside of this building say, TEXAS CANCER CENTER!
"Oh my gosh, they think I have cancer!" instantly races through my brain. For all of its advancements, drugs and treatment, it still feels, at that very moment, that someone has just tatooed a death sentence on your forehead. I call Dave and have to leave him a voice mail message. I tell him where I am and that I can't make myself get out of my car. I'm frightened of what lies ahead.
I say a prayer and ask God for the strength to get through this and actually force my legs to begin moving. Once inside I sign in and take a seat. I've left my sunglasses on because the tears are on the verge of spilling over at any moment. Now everyone knows that the most important things have to be taken care of first. I'm called back to a cubicle and the lady says, "Let me see your insurance card", they want to know how they're going to be paid. I hand it to her, she disappears and I'm all alone with my thoughts. You can imagine what that was like. She flits back in and proceeds to tell me, "Oh good, your insurance pays 100% of chemotherapy and for a port to be installed into your upper chest for the drugs and your co-pay is $25." She probably said much more than this but once I heard chemotherapy all my mind kept saying was,
"You can just turn around from here and go right out that door. No one can make you stay." The tears that were on the verge began to overflow. I was glad I had my sunglasses on because I didn't want anyone to try and comfort me or pity me at that moment. She tells me that I can go back out to the waiting room and take a seat.
They call my name to do more bloodwork in their lab and then I wait some more. Eventually, I am called to see Dr Naga. She is difficult to understand but very matter of fact. She tells me that my blood platelets are dangerously low and they need to find out why. I'm scheduled for a bone marrow biopsy on Monday (this is a Friday) and in the meantime, she sends me to Denton Regional for a transfusion.
I couldn't wait to get out of the TXCC. Finally I was released! However,I find myself right back in the processing area at the hospital only this time I'm not light hearted and making jokes with the lady. Everyone knows you're not allowed admittance, or to do anything until your paperwork is done. I get sent to THEIR lab and for the 3rd time in 2 days, more blood is drawn.Then you wait some more. I was at the Cancer Center at 9AM and it's now 1:30PM. I called the lady I clean for on Fridays telling her I suddenly can't make it.
After an eternity, my name is called and I'm taken through this labyrinth within the bowels of the hospital. I'm set up in a bed back in the surgery recovery area and await the transfusion. Now, in the past I have donated more than my fair share of blood and so I don't feel as though I'm just a taker in this world. I will tell you though that I was very humbled by someone elses generosity. (If you are able to donate blood, please do so. You or someone you love might one day be on the receiving end of this precious gift.)
Getting a transfusion is no simple task really. There is the set up, finding the right vein and hooking you up to the Saline solution which is dripped first. Then there is usually Benadryl dripped in, in case of a reaction. Finally they start the platelet transfusion. Platelets when separated from the blood resemble urine. Great, they're dripping pee into me! During this process you are monitored for a reaction. When you're done, they continue to monitor you for a time. A minor reaction involves chills. A major reaction would be your throat swelling shut, leaving you unable to breathe. This would happen to me at a later date with one of the chemo drugs they infused me with.
Finally around 5PM I'm able to go home. This has been one of the longest days of my life. That weekend would see Dave & I praying about the bone marrow biopsy on Monday.
To be continued....
WHAT IS IT?
ITP or, idiopathic thrombocytopenic purpura, also known as immune thrombocytopenic purpura, is classified as an autoimmune disease. In an autoimmune disease the body mounts an attack toward one or more otherwise normal organ systems. In ITP, platelets are the target. They are marked as foreign by the immune system and eliminated in the spleen, or sometimes the liver. Platelets are those marvelous little things in our blood which allows it to clot. A normal range for blood platelets is 150,000 to 400,000 per, whatever they measure it in. For someone with ITP, our blood doesn't clot very well which lends us to all sorts of risks. There is the obvious severe bruising that happens whenever we bump into something, no matter how slight. I also take a very long time to heal from normal cuts and scrapes. At its extreme, there is a risk for bleeding in the brain leading to a stroke or if you have internal injuries say from a car accident, you could bleed to death. I wear a Medical Alert bracelet at all times in case I am unable to communicate to someone that I am at risk and need blood STAT (as they would say on *M*A*S*H).
ITP is characterized more by its description than the specific properties of the disease. It is the diagnosis when platelets are abnormally low and other diseases that could cause low platelets have been ruled out. Usually there is the presence of antiplatelet antibodies indicating that the body has decided to consider the platelets foreign. It attacks them with an antibody as it would bacteria. The body then does what it is programmed to do with bacteria: eliminate them. This is done in the spleen or liver.
ITP can present itself with small purple spots called petechiae in the mouth and legs, nose bleeds, and bleeding gums during normal dental care. Some people develop bruises on their arms and legs with no provocation. It is often accompanied by fatigue and sometimes depression. I got this clinical definition from the source listed here:
http://www.itppeople.com/aboutitp.htm
HOW DO YOU GET IT?
Well, that's the $64,000 question! Lots of theories all the way from the outlandish to the realistic. I'm not sure why my body suddenly decided to turn on itself and destroy my blood platelets. I had extensive blood work done when I was 40 and have been a blood donor up until 4 years ago and never once did this ever appear in the tests. It's safe to guess that I came down with this sometime after 2002. Looking back, I had a warning sign, when I developed a resistent infection on my left hand 2 years ago. I had cut myself and it got infected and took nearly 2 months to heal. Did my immune system, in trying to battle this infection become overly agressive and not know when to shut itself back down once I had finally healed? Is that why I have ITP? I can't really say and neither can the doctors.
IS IT CONTAGIOUS?
Uh, in a word, NO!
TREATMENT OF ITP
I've been poked & prodded, bruised & infused, been on more drugs and steroids than a pharmacy and ultimately had my spleen removed, all in order to get this disorder under control. There are some schools of thought to juice up vegetables and drink them. I don't know why you can't eat just eat carrots rather than liquifying them. I am currently on the drug DANAZOL and I take a handful of vitamins every day. Even that's tricky. Most people think Vitamin C is a good thing but not for someone like me who has an overly agressive immune system! The same goes for anything derived from fish oils. I take a Multi-vitamin, Iron, Calcium, Folic Acid, Vitamin B12 & Vitamin K. Now that my spleen has been removed I have to have a flu shot and a pnemonia shot every year!
HOW DID I FIND OUT I HAVE ITP?
That was interesting! I was doing the necessary preliminary paperwork and bloodwork at Denton Regional Medical Center for a minor, outpatient procedure performed by my OB/GYN. Within an hour My OB/GYN PERSONALLY called me and said,
"We have a problem with your labwork. I'd like you to see Dr. Nagabharava. Her nurse will call you to set up the appointment. Their address is, blah, blah, blah."
Um, okay. The nurse calls me on my cell, the appointment is set for the next day and that is the end of that conversation.
The next day finds myself, pulling into the parking lot of the address they've given me. Imagine my shock and fear when the lettering on the outside of this building say, TEXAS CANCER CENTER!
"Oh my gosh, they think I have cancer!" instantly races through my brain. For all of its advancements, drugs and treatment, it still feels, at that very moment, that someone has just tatooed a death sentence on your forehead. I call Dave and have to leave him a voice mail message. I tell him where I am and that I can't make myself get out of my car. I'm frightened of what lies ahead.
I say a prayer and ask God for the strength to get through this and actually force my legs to begin moving. Once inside I sign in and take a seat. I've left my sunglasses on because the tears are on the verge of spilling over at any moment. Now everyone knows that the most important things have to be taken care of first. I'm called back to a cubicle and the lady says, "Let me see your insurance card", they want to know how they're going to be paid. I hand it to her, she disappears and I'm all alone with my thoughts. You can imagine what that was like. She flits back in and proceeds to tell me, "Oh good, your insurance pays 100% of chemotherapy and for a port to be installed into your upper chest for the drugs and your co-pay is $25." She probably said much more than this but once I heard chemotherapy all my mind kept saying was,
"You can just turn around from here and go right out that door. No one can make you stay." The tears that were on the verge began to overflow. I was glad I had my sunglasses on because I didn't want anyone to try and comfort me or pity me at that moment. She tells me that I can go back out to the waiting room and take a seat.
They call my name to do more bloodwork in their lab and then I wait some more. Eventually, I am called to see Dr Naga. She is difficult to understand but very matter of fact. She tells me that my blood platelets are dangerously low and they need to find out why. I'm scheduled for a bone marrow biopsy on Monday (this is a Friday) and in the meantime, she sends me to Denton Regional for a transfusion.
I couldn't wait to get out of the TXCC. Finally I was released! However,I find myself right back in the processing area at the hospital only this time I'm not light hearted and making jokes with the lady. Everyone knows you're not allowed admittance, or to do anything until your paperwork is done. I get sent to THEIR lab and for the 3rd time in 2 days, more blood is drawn.Then you wait some more. I was at the Cancer Center at 9AM and it's now 1:30PM. I called the lady I clean for on Fridays telling her I suddenly can't make it.
After an eternity, my name is called and I'm taken through this labyrinth within the bowels of the hospital. I'm set up in a bed back in the surgery recovery area and await the transfusion. Now, in the past I have donated more than my fair share of blood and so I don't feel as though I'm just a taker in this world. I will tell you though that I was very humbled by someone elses generosity. (If you are able to donate blood, please do so. You or someone you love might one day be on the receiving end of this precious gift.)
Getting a transfusion is no simple task really. There is the set up, finding the right vein and hooking you up to the Saline solution which is dripped first. Then there is usually Benadryl dripped in, in case of a reaction. Finally they start the platelet transfusion. Platelets when separated from the blood resemble urine. Great, they're dripping pee into me! During this process you are monitored for a reaction. When you're done, they continue to monitor you for a time. A minor reaction involves chills. A major reaction would be your throat swelling shut, leaving you unable to breathe. This would happen to me at a later date with one of the chemo drugs they infused me with.
Finally around 5PM I'm able to go home. This has been one of the longest days of my life. That weekend would see Dave & I praying about the bone marrow biopsy on Monday.
To be continued....
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