I have kept journals since I was eight or nine years old, most of which were filled with mundane and unimportant misspelled information about whatever was on my mind that day. Forgetful disinterest created voids of missing entries, but, overall, I did keep it updated. After diagnosis, I kept secondary journals for things that I deemed special enough to warrant their own small books. One of these was my "Jessica's 14 day visit" journal, dating August 9th- 22nd, 1988.
Jessica O. was a friend I was born to have, as our mothers have been best friends since they were twelve years old. About three years before the visit, there was a time that she, her mother, and brothers lived with us. We were young and would argue about which of our 45 lb bodies had less room in the full-sized posted bed we shared, inching ourselves closer to the edge until three more girls our size could have laid in between us! We would also spy on our brothers and giggle until I got the hiccups. It is safe to say that she and I shared a special bond and her 14 day visit did, indeed, demand its own journal!
I found "Jessica's 14 day visit" with another one that my mom kept at the time. My handwriting was shaky from the prednisone I was on at the time and my spelling was horrible, but I will enter it was written. Below, my entries are in black, with notes of interest in blue, and my mom's are in green. (I should also note that my little brother William, aka "Billy" in these entries, was in OH visiting family for most of those 2 weeks.)
8-9-88 "First Day"
We picked Jessica up from the airport at 1:40pm. We went to Vanderbuild medical center for some radiation treatment. Then we came home. Jessica and I had dinner and played a wail and went to bed.
8-10-88 "Secound Day"
We got up. We got prepared for a visit to the clinic. We had a long day at the clinic. I had radiation and cytoxyn and a unit of blood. Yuck! That took almost 10 hours. We stayed their from 9:00am-5:45pm. We went to dinner at Misses Winners. Then we went home. We got prepared for bed. Then went to bed. I had a hard night. I threw up almost every 10 minnuts all night. Manly cause I couldn't take my medicine to later.
The girls and I came to clinic early. Beth had counts taken, Red count too low (16) so she had to have RBC transfusion. But absolute neutrophil count and platelets are ok to get cytoxin...really didn't expect it already. Went to radiology - had IV already to start hydration before the cytoxin. They gave the cytoxin, then the blood; we were at the clinic from 9am-5:40pm! Beth had thrown up even before we left, it was the beginning of a very rough night. Even with the anti nausea and vomiting medicine at one point Beth was vomiting every 10 minutes. I slept in the recliner, Beth on the couch so we wouldn't wake up Jessica and Mark.
(It was one of those nights that I remember entirely too well- and another reason why the "c" word (aka, cytoxin) is considered a bad word amongst those of us treated with it! Talk about a long day for someone not accustomed to the long chemo days, though - Jessica was a trouper and made that horrid day more fun!)
8-11-88 "Third day"
We went to Vanderbuilt to get a spinal tab and to run me threw with flouds. OW! That spinal hert! Then I got radiation. Then we went home. We played a while. We ate supper and played some more and went to bed. (I believe this is where the infamous story of how Jessica got upset watching the spinal and I told Ann, the nurse, that Jessica had her mother's tender heart - or something of the likes. :))
We called Ann in the morning and she said to come on into the clinic for some IV fluids before her spinal. So we left before 8am and had fluids, spinal, and radiation - left about 12:30 or 1pm and went to Mrs. Winners for lunch, then went to Hickory Hollow Mall; Beth felt much better. The girls bought themselves an Island skipper, I bought...them each a porcelain doll.
8-12-88 "Forth Day"
We got up and went to Vanderbuilt for a quick radiation. Then we went to dad's work. Dad, mom, Jessica, and I all went out to pizza hut! Then we met aunt Susan and went to Opreland! And boy did we have fun! We watched some shows and rode lots of rides. We came home it was around 10:30 when we got back. We went strait to the sheets!
We went to radiation then Opryland for the afternoon and evening with Susan. Ate lunch with Mark at Pizza Hut - was crowded...
(This was a wonderful day - last day of the ten radiation treatments and the start of a four day break from clinic! For whatever reason, another vivid memory of that day is of Mom and Jessica, on the other side of the glass in radiology, telling the tech. that we were getting to go to Opryland that afternoon. :))
8-13-88 "Fith Day"
Saturday me-o-my. Dad watched me and Jessica, mom went to work. Dad went on a bike ride and to get some wood. Me and Jessica stayed home. Dad brout the wood back and made me and Jessica some lunch. Me and Jessica cleaned up. We got Billy's room ready for painting. Mom came home and was sirprized! We had supper. Then we played some. We went to bed. (Mom was in barber college - I called it "work," but it was actually school.)
Sat- School for me. Mark put shelves up in Beth and Billy's closets.
8-14-88 "Sixth day"
We got up and waited for mom to get back from church. She got back and made lunch. Then mom and dad painted. Me and Jessica spied! We got to paint a little. Mom finished painting it Blue. We ate dinner. We talked about Dolly parten's pumpkins, Laura Ingalls apples, and chaka will shock ya! We played some more and went to bed. (I believe that only Dad, Mom, Jessica, and I completely get this reference - if I ever wondered what dinner conversation initiated this infamous joke, here it is on Aug 14th of 1988!)
Sun- painted Billy's room and closet.
8-15-88 "Seventh day"
We got up and ate brefest. Me and Jessica spied on Mom. We made two great clubs. It was so much fun. Then we went to regester for school. I can't wait to start. Then we went to Kelly's b'day party. It was a big bore! We went home and ate. And I threw up because of my pill! We went to bed. (We made our secret spy club, folder and all, that day. I have it somewhere in storage. We took it very seriously and kept it up in the years to come - secret spies! I also remember the birthday party - it was at some restaurant and no one really knew how to act around me. There were all these little 10 year old girls who had no idea what to say (or not say) to a balding girl their age - all chubby from steroids and not really looking like the friend they remembered. I do remember Jessica and I stifling giggles about this or that. It was boring, though! I should also add something else about Jessica - she never treated me differently than before. I wasn't an alien or some mis-formed oddity to either gawk at or be wary around, I was just Beth. She brought me a much needed normalcy, making those two weeks even more special!)
8-16-88 "Eighth day"
We got up and played a while. We got prepared for a big day with the Japanesses. I desided to take my pills in the morning. And I desided to take the liquid. We went to Mrs. Okoto. It was so much fun. We ran some arends. Then we came home and ate some dinner. Then we watched Never Ending Story. We went to bed. (I really don't know why taking my pills in the morning would have been such a big deal, but I guess it was. I do remember what we had for lunch that day - Octopus soup! I think Jessica and I filled up on tea more than the soup, though.)
8-17-88 "Ninth Day"
We got up and went to clinic. I had a spinal tab and OW! It hurt worse than ever. Then we went to show biz. We went to sears and I almost fainted and I started geting noseated. We went to K-mart and I threw up. I kept it up a while. Mom gave me some Benidrill. I felt better. We watched Retern of the Jedi and Billy came home. We went to bed.
Clinic- Beth had a spinal and Ara-C. Needs blood (RBCs) but will wait till Friday AM. Went to showbiz for lunch then to sears to see about bedspread for Billy. 105 degrees sunny, HOT, Beth nearly passed out. felt sick, left as quick as possible. Went to K-mart to get Beth's Rx (slept in the car there). She threw up in Kmart - was so sick. I felt so bad for her - home, she napped - threw up again. Billy came home tonight.
(I remember that spinal tap - I really do think it hurt worse than any other one I have ever had. I did think of this day somewhat recently, though - not because of the spinal tap, but because of throwing up into a plastic shopping bag from K-mart! I had a Target bag in our trunk en route home from a recent trip. When my eldest got a little car sick, I got it out and gave it to her - told her that I had used one like it when I was her age.)
8-18-88 "Tenth day"
We got up . We didn't do much that day. We slept in a tent it was great. (I obviously wrote this the next day or something of the likes. :) It must not have been eventful, as mom also didn't journal that day.)
8-19-88 "Eleventh day"
We got up and went to the clinic. I got a unit of blood. Then we went to comberland musium it was great. It was so much fun. We went home and prepared for Wellers coming. We had a great time with the baby. We went to bed and slept great. (I am guessing this was the unit of RBCs that Mom said that I would need Friday. I remember having fun with that cute little baby girl.)
Blood transfusion.
8-20-88 "Twelth Day"
Gosh today's Saturday. Mom said dad would do something fun, wrong....but we did get something acomplished. We got my closet painted. That night we went out to eat with Mcgarthars. We had a fun time and great sleep.
School - Mark painted Beth's closet.
8-21-88 Thirteenth Day"
We got up and watched two movies. Three on the run. Blue yonder. They were great then we went to the open house. It was fun. We packed up. We had to get to bed early because tomorrow Jessica leaves. We slept fine. (It really must have been a slow day to watch two movies! I know I was already bummed because Jessica was leaving! It also marked 2 months since the day I was diagnosed!)
8-22-88 "Forteenth Day"
We got up and waved goodby it was fun to have Jessica. We will miss her. We went to by school stuff. I sure miss Jess. Well I was able to sleep fine, but I'm nervos about school. (This was a Monday and the next day was a half day of school - I did have a good reason to be nervous about school, but that is another blog story.)
Jessica went home.
I think I might have to dig out other journals from that summer - but those two weeks were, by far, that summer's best! Thank you, Jessica O.
Thursday, January 16, 2014
Friday, August 23, 2013
When the bad can be used for good ~
NOT A VICTIM! 
It is a pet peeve of mine - survivors who see themselves as victims...still playing the "cancer card" left and right. I guess this really can apply to any type of hardship, whether from childhood or adulthood. Crap happens. It is what we do afterwards that matters the most. How do we utilize our sorrows and tragedies? Do we file them into our "I would rather not remember this" memory cabinet or do we try and help others?
I guess this is a shameless promotion for the not-for-profit that my husband and I started back in 2008 - HeartBoxed. It is related to my above ramblings, though - using something that could be seen as negative and using it instead for good.
According to our website (www.heartboxed.org):
HeartBoxed is an organization whose goal is to tangibly encourage children from financially strained families who require extended stays in the hospital. When families are incapable of providing their ill children the adequate diversions and support they require, HeartBoxed's desire is to help alleviate some of the pain of these difficult times. The hope of HeartBoxed is to raise the spirits and motivate these children during their fights against these serious illnesses.
That is the "why" part of things, but there is a much longer backstory to how HeartBoxed was birthed.
Back while I was on chemotherapy, I knew that if I were to ever relapse, I would need to have a bone marrow transplant. It was the dirty-worded last ditch attempts for saving a life - an option that no one wanted to take. Then again, who would want cancer to start with, but still... Last ditch, "please God, don't let it happen to me," type treatment. I was lucky to never have needed one - but more than a few friends had to take that journey. When one of my closest cancer friends relapsed and had to have a bone marrow transplant, I was horrified. I was scared for her and was upset at how incredibly powerless to help that I would be. Visiting her wasn't even allowed!
In general, bone marrow transplants require around a 3 month stay in the hospital, with at least that long of daily hospital/clinic trips, while living within a mile radius of it. (Read: Get an apartment, because you aren't going home!) The way it was explained to me: The patient is brought as close to death as possible, killing off their own bone marrow with high doses of chemotherapy and intense fully body radiation during the weeks leading up to the actual "transplant." Then, afterward that, all attempts are made to bring them back to life - hoping that the new marrow "takes" and their aren't adverse effects of the body rejecting the marrow or unforeseen complications from the match.
I wanted to take my friend's place. I knew how to do the chemo patient thing - I was a pro at playing that part. But the bystander? That was not a role I was either used to or comfortable with...there had to be MORE. What I did do was make her a couple of months of things to do - a letter to read each day, little presents to open, activities and challenges - anything to pass the time. It did serve as the encouragement in which I had hoped.
A few years later, there was a neighbor of a friend, another young girl, who was going to have a bone marrow transplant. I was asked if I could do something like what I had done for my friend, so I did that. A few years after that, a family friend's daughter had to have a bone marrow transplant and I did the same again. A few years later, two adult friends had to have bone marrow transplants within a year of each other. With one I did a modified version of similar encouragement and the other was more "traditional" to what I had done in the past. It was after that last one that my mother suggested patenting the idea or something of the likes...which made me start thinking...
I knew I could never create some type of template for people to purchase or custom make for any monetary gain. However, it was something I was good at and had decades of practice doing by that point. It had always received positive feedback of encouragement, as well as the welcomed distraction from being sick. It was then that we began praying and were given the clear direction to start a ministry - a not-for-profit that could put these gifts to better use.
In May 2008, we became a 501(c)3 non profit and, by the following May, we were partnered with Duke's Pediatric Bone Marrow Transplant Unit's Family Support team. (Since I get asked this often - No, we do not profit. By not-for-profit, every donation that is made - whether cash, needed items, or time - is donated and used 100% for the kids we help. No kick backs.)
Again, from the website, "What we do:"
HeartBoxed creates age and gender appropriate packages that are catered to the personalities and interests of the children referred to the organization. Each package includes a book that serves as a calendar for his/her stay and is made specifically for the child, with themes that will engage them. On each page, there are tabs to peek under instructing a numbered gift to open, challenges to perform, and activities to fill the child’s day. Crafts, activities, and gifts are wrapped to open in coordination with these tabs.
For the past five years, we have had the privilege to be apart of this ministry. It is not something that always comes easy, though. I know that with every kiddo I "get to know" via their intake sheets (full of information on likes and dislikes), that there are many who will never leave the transplant unit. I grieve whenever I hear about one of those sweet souls who did not make it through to the other side of the transplant. I also rejoice when I hear of those who do! I have learned how to be the "support person" in the cancer scenario, whether making the books/boxes for kids or visiting a teen and talking about times when I was bald or sick with them. I am the one on the other side - grown into an adult with three miracle babies (that I wasn't supposed to be able to have), alive and well, and....with HAIR! Never underestimate the encouragement of a veteran bald kid who now has hair! I wanna grow up, I wanna grow HAIR, and I want to go to...maybe not Boise. ;)
It is a pet peeve of mine - survivors who see themselves as victims...still playing the "cancer card" left and right. I guess this really can apply to any type of hardship, whether from childhood or adulthood. Crap happens. It is what we do afterwards that matters the most. How do we utilize our sorrows and tragedies? Do we file them into our "I would rather not remember this" memory cabinet or do we try and help others?
I guess this is a shameless promotion for the not-for-profit that my husband and I started back in 2008 - HeartBoxed. It is related to my above ramblings, though - using something that could be seen as negative and using it instead for good.
According to our website (www.heartboxed.org):
HeartBoxed is an organization whose goal is to tangibly encourage children from financially strained families who require extended stays in the hospital. When families are incapable of providing their ill children the adequate diversions and support they require, HeartBoxed's desire is to help alleviate some of the pain of these difficult times. The hope of HeartBoxed is to raise the spirits and motivate these children during their fights against these serious illnesses.
That is the "why" part of things, but there is a much longer backstory to how HeartBoxed was birthed.
Back while I was on chemotherapy, I knew that if I were to ever relapse, I would need to have a bone marrow transplant. It was the dirty-worded last ditch attempts for saving a life - an option that no one wanted to take. Then again, who would want cancer to start with, but still... Last ditch, "please God, don't let it happen to me," type treatment. I was lucky to never have needed one - but more than a few friends had to take that journey. When one of my closest cancer friends relapsed and had to have a bone marrow transplant, I was horrified. I was scared for her and was upset at how incredibly powerless to help that I would be. Visiting her wasn't even allowed!
In general, bone marrow transplants require around a 3 month stay in the hospital, with at least that long of daily hospital/clinic trips, while living within a mile radius of it. (Read: Get an apartment, because you aren't going home!) The way it was explained to me: The patient is brought as close to death as possible, killing off their own bone marrow with high doses of chemotherapy and intense fully body radiation during the weeks leading up to the actual "transplant." Then, afterward that, all attempts are made to bring them back to life - hoping that the new marrow "takes" and their aren't adverse effects of the body rejecting the marrow or unforeseen complications from the match.
I wanted to take my friend's place. I knew how to do the chemo patient thing - I was a pro at playing that part. But the bystander? That was not a role I was either used to or comfortable with...there had to be MORE. What I did do was make her a couple of months of things to do - a letter to read each day, little presents to open, activities and challenges - anything to pass the time. It did serve as the encouragement in which I had hoped.
A few years later, there was a neighbor of a friend, another young girl, who was going to have a bone marrow transplant. I was asked if I could do something like what I had done for my friend, so I did that. A few years after that, a family friend's daughter had to have a bone marrow transplant and I did the same again. A few years later, two adult friends had to have bone marrow transplants within a year of each other. With one I did a modified version of similar encouragement and the other was more "traditional" to what I had done in the past. It was after that last one that my mother suggested patenting the idea or something of the likes...which made me start thinking...
I knew I could never create some type of template for people to purchase or custom make for any monetary gain. However, it was something I was good at and had decades of practice doing by that point. It had always received positive feedback of encouragement, as well as the welcomed distraction from being sick. It was then that we began praying and were given the clear direction to start a ministry - a not-for-profit that could put these gifts to better use.
In May 2008, we became a 501(c)3 non profit and, by the following May, we were partnered with Duke's Pediatric Bone Marrow Transplant Unit's Family Support team. (Since I get asked this often - No, we do not profit. By not-for-profit, every donation that is made - whether cash, needed items, or time - is donated and used 100% for the kids we help. No kick backs.)
Again, from the website, "What we do:"
HeartBoxed creates age and gender appropriate packages that are catered to the personalities and interests of the children referred to the organization. Each package includes a book that serves as a calendar for his/her stay and is made specifically for the child, with themes that will engage them. On each page, there are tabs to peek under instructing a numbered gift to open, challenges to perform, and activities to fill the child’s day. Crafts, activities, and gifts are wrapped to open in coordination with these tabs.
For the past five years, we have had the privilege to be apart of this ministry. It is not something that always comes easy, though. I know that with every kiddo I "get to know" via their intake sheets (full of information on likes and dislikes), that there are many who will never leave the transplant unit. I grieve whenever I hear about one of those sweet souls who did not make it through to the other side of the transplant. I also rejoice when I hear of those who do! I have learned how to be the "support person" in the cancer scenario, whether making the books/boxes for kids or visiting a teen and talking about times when I was bald or sick with them. I am the one on the other side - grown into an adult with three miracle babies (that I wasn't supposed to be able to have), alive and well, and....with HAIR! Never underestimate the encouragement of a veteran bald kid who now has hair! I wanna grow up, I wanna grow HAIR, and I want to go to...maybe not Boise. ;)
Thursday, July 26, 2012
Then: "You want me to swallow that?!"
Then: I wrote around this "chapter" of my cancer stories collection back around 1990 and edited it as a teenager. I can't find the original, although I guarantee it was filled with misspelled words and horrible grammar!
You Want Me to Swallow That??
After living a sheltered life of liquid antibiotics, liquid Tylenol, liquid decongestants, and basically liquid everything, one can only imagine how my eyes about popped out of their sockets when nurses brought in my first set of pills. All I could think of to say was, "You want me to swallow that?" I figured that either they were playing a really mean trick on me or else my sheltered liquid existence had presently come to a screeching halt. Sadly, it was the latter.
Apparently the extent of knowledge that nurses acquire goes beyond basic medicine, and includes dabbling in the art of creative pill-taking. When it became evident that I wasn't going to be able to swallow those pills, a nice solution was presented - ice cream! Actually, it was sherbet, to be exact. Slip those annoying little suckers into a spoon full of lime flavored goodness and down they glide. This concept worked great until Prednisone.
My dad called it the "pregnant zone," sort of like the twilight zone, only involving an unnaturally massive appetite. Prednisone causes one to become a regular eating machine. All I wanted to do was eat everything in sight! I suppose that was a good thing since we were told that if I didn't eat whenever I was hungry, I could have developed an ulcer. Our doctor told my family about a two-year old who had polished off a dozen hard boiled eggs and still wanted more! The flustered, and somewhat worried, mother called the doctor, wondering what to do. The doctor, completely not alarmed, asked if she had any more eggs. Since she did not, he suggested she make a run to the store!
Back to the sherbet...one of the many downsides of Prednisone (the drastic mood swings and weight gain wont be discussed here) was that it tasted terrible!!! Even if I swallowed it in one gulp, the taste of the pill merely touching my tongue was unbearable! My dear aunt, we will call her "Aunt L", provided a wonderful tip. She suggested coating the pill in butter, so it would glide down easier and not taste so bad. So, I bet you can guess what I did everyday at pill-taking-time. I would sit down with my glass of 7-up, a butter tub, and a handful of pills.
One day, I was doing my daily ritual of pill taking. I had buttered my pills and taken all of them, except the Prednisone. Well, unfortunately it was one of those dreaded days that I didn't swallow it fast enough. Gross! I made a fast run to the refrigerator and grabbed the first thing that I saw, the sweet pickle jar. I opened it up and took a big swig of the juice. As disgusting as it may sound, it took away the taste instantly! From then on, along with my glass of 7-up, butter tub, and pills, was a jar of pickle juice.
Chemotherapy experts know that not all pills are as small as others. Take Methotrexite, for instance - even though I had to take twelve of them in one sitting, they were so small that it didn't really matter. (I did, however, sing the chorus of "Mary had a little lamb" and other such juvenile tunes in between pills to "clear my passageway" for the next one. It was, of course, only pointless stalling.)
The first "big" pill that I had to take, which really wasn't all that large, I took in my initial hospital stay. It was the Colase pill - one of those red, gel-capped ones that are supposed to easily slide down. Well, in my pill-phobic mind, that pill was going to get in my mouth, turn sideways, block my throat, and make me choke to death! It didn't occur to me that I was in the hospital, the best place to choke. So, starting at 8pm, I held that pill, rolling it and squishing it, trying desperately to make it smaller. My dad was with me that night and was being extremely patient, waiting sitcom after sitcom for me to take it. After three hours, I still couldn't take that scary red gelcap. Eventually, I just wimped out, so they brought me in the liquid. "It has comes in liquid?" I wondered why they didn't just start with that option! You may think that would be a miniature glimpse of heaven to me, which is what I thought, as well - until I had a drop or two. Those drops of blue fire burned everything they touched. (One of my friends in the "clinic gang," which I will tell more about later, called it hot juice. No kidding!) The nurses improvised with a plan C. They poked a hole in the pill and drained its inside liquid into a large cup of chocolate ice cream with whipped cream, chocolate syrup, and chocolate chips. Although it might sound tasty, it was awful!! A tip: Never put these types of medication into chocolate, it just isn't an efficient cover for the bad taste.
The saga of the Colase pill didn't end with that night. The following night, my grandmother stayed with me in the hospital and she helped talk me through taking it. It was a much easier task, since, for once, the liquid solutions were definitely not options! When I finally swallowed the monster, I was so excited that I nearly ripped my IV out in my plunge for the telephone. I had to tell mom and dad that I had swallowed that dang pill!
You Want Me to Swallow That??
After living a sheltered life of liquid antibiotics, liquid Tylenol, liquid decongestants, and basically liquid everything, one can only imagine how my eyes about popped out of their sockets when nurses brought in my first set of pills. All I could think of to say was, "You want me to swallow that?" I figured that either they were playing a really mean trick on me or else my sheltered liquid existence had presently come to a screeching halt. Sadly, it was the latter.
Apparently the extent of knowledge that nurses acquire goes beyond basic medicine, and includes dabbling in the art of creative pill-taking. When it became evident that I wasn't going to be able to swallow those pills, a nice solution was presented - ice cream! Actually, it was sherbet, to be exact. Slip those annoying little suckers into a spoon full of lime flavored goodness and down they glide. This concept worked great until Prednisone.
My dad called it the "pregnant zone," sort of like the twilight zone, only involving an unnaturally massive appetite. Prednisone causes one to become a regular eating machine. All I wanted to do was eat everything in sight! I suppose that was a good thing since we were told that if I didn't eat whenever I was hungry, I could have developed an ulcer. Our doctor told my family about a two-year old who had polished off a dozen hard boiled eggs and still wanted more! The flustered, and somewhat worried, mother called the doctor, wondering what to do. The doctor, completely not alarmed, asked if she had any more eggs. Since she did not, he suggested she make a run to the store!
Back to the sherbet...one of the many downsides of Prednisone (the drastic mood swings and weight gain wont be discussed here) was that it tasted terrible!!! Even if I swallowed it in one gulp, the taste of the pill merely touching my tongue was unbearable! My dear aunt, we will call her "Aunt L", provided a wonderful tip. She suggested coating the pill in butter, so it would glide down easier and not taste so bad. So, I bet you can guess what I did everyday at pill-taking-time. I would sit down with my glass of 7-up, a butter tub, and a handful of pills.
One day, I was doing my daily ritual of pill taking. I had buttered my pills and taken all of them, except the Prednisone. Well, unfortunately it was one of those dreaded days that I didn't swallow it fast enough. Gross! I made a fast run to the refrigerator and grabbed the first thing that I saw, the sweet pickle jar. I opened it up and took a big swig of the juice. As disgusting as it may sound, it took away the taste instantly! From then on, along with my glass of 7-up, butter tub, and pills, was a jar of pickle juice.
Chemotherapy experts know that not all pills are as small as others. Take Methotrexite, for instance - even though I had to take twelve of them in one sitting, they were so small that it didn't really matter. (I did, however, sing the chorus of "Mary had a little lamb" and other such juvenile tunes in between pills to "clear my passageway" for the next one. It was, of course, only pointless stalling.)
The first "big" pill that I had to take, which really wasn't all that large, I took in my initial hospital stay. It was the Colase pill - one of those red, gel-capped ones that are supposed to easily slide down. Well, in my pill-phobic mind, that pill was going to get in my mouth, turn sideways, block my throat, and make me choke to death! It didn't occur to me that I was in the hospital, the best place to choke. So, starting at 8pm, I held that pill, rolling it and squishing it, trying desperately to make it smaller. My dad was with me that night and was being extremely patient, waiting sitcom after sitcom for me to take it. After three hours, I still couldn't take that scary red gelcap. Eventually, I just wimped out, so they brought me in the liquid. "It has comes in liquid?" I wondered why they didn't just start with that option! You may think that would be a miniature glimpse of heaven to me, which is what I thought, as well - until I had a drop or two. Those drops of blue fire burned everything they touched. (One of my friends in the "clinic gang," which I will tell more about later, called it hot juice. No kidding!) The nurses improvised with a plan C. They poked a hole in the pill and drained its inside liquid into a large cup of chocolate ice cream with whipped cream, chocolate syrup, and chocolate chips. Although it might sound tasty, it was awful!! A tip: Never put these types of medication into chocolate, it just isn't an efficient cover for the bad taste.
The saga of the Colase pill didn't end with that night. The following night, my grandmother stayed with me in the hospital and she helped talk me through taking it. It was a much easier task, since, for once, the liquid solutions were definitely not options! When I finally swallowed the monster, I was so excited that I nearly ripped my IV out in my plunge for the telephone. I had to tell mom and dad that I had swallowed that dang pill!
Tuesday, July 17, 2012
What's with the hair and Boise?
If you are wondering what hair and Boise have in common, they are both childhood dreams that can be found in Erma Bombeck's book, "I want to grow hair, I want to grow up, and I want to go to Boise."
THEN:
When I was ten, I was diagnosed with acute lymphocytic leukemia. Even though the prognosis was bleak and the years that followed had more chemotherapy than slumber parties, the memories were priceless. After reading and laughing through Erma's book, I was inspired to begin penning my own cancer experiences, specifically the humorous ones. Although I kept them all, I only allowed family and a few friends to read them...until now.
NOW:
It has been 24 years since I was diagnosed. Despite odds, I have survived - more than that, I have thrived! However, with the long term and late term effects of chemotherapy and radiation beginning to rear their lovely little heads, cancer has again taken an active role in my life. Some cancer reminders are by my own choosing, like starting a non-profit that interacts with kids like me, but regardless of the source, new experiences have stirred me to write again. Another survivor friend of mine and I are very slowly working on a book geared towards teens and young adults going through cancer with hopes of addressing the issues that so many books omit. (I am sure I will be explaining that more somewhere on this blog.)
SO, whether it be excerpts from my childhood ramblings or things of today - these are my attempts at transparency concerning cancer!
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| One of the first times I wore a baseball cap since my hair grew back in the early 90s |
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