I don't think I've mentioned yet that my brilliant brain surgeon doesn't shave heads. Rather, he scalps. I have heretofore always been the girl with no broken bones, sprains, stitches, or surgeries. Now I have about a million stitches. And a flap of skin on my head that feels like a mat of squished nerves. The stitches sit right on my part in the middle of my head, above my ear, and there are some near my right temple and some in my right cowlick on the crown of my head. All of them itch. But they are healing nicely amidst my full head of hair. Radiation may take care of the hair later, but for now, my vanities remain slightly intact. By the way, it is interesting to contemplate Halloween now that I have legitimate claim on Frankenstein and who?– What other scalpees/stitchees come to mind for Halloween costumes? Early Pilgrim? Pioneer Woman without a Gun? Sacajawea’s less fortunate white sister? Nameless Woman on Dances with Wolves?
Tuesday, September 14, 2010
Recollections: Scalpings and other Surgical Procedures
In which our Lady of the Scalp maps her skull for you all
Recollections: Nurses and Humility
In which our Lady pays Homage to the Nurses and tells somewhat Embarrassing stories
Lest you think I am a hospital’s worst nightmare (see earlier entry on the Bolsheviks), I will now pay humble tribute to the many wonderful nurses in the neuro-unit. The first day there was Heather, of the beautiful teeth and somehow attractive nose-piercing, who, against the odds made me feel welcome and at home, and the cute blonde (sans name—sorry) who fairly shone from the inside out (How many times did I want to ask if she was LDS—and I was on drugs, so I probably should have?) Then there was Connie, funny full-of-energy, Hispanic, and Hey-Sook, both so much nicer about my vitals and my many IV bruises than all others. And there was my friend Julie Hatch’s doppelganger (when she had dark hair), who gave me my first shower after surgery (May I quit being humbled). It was odd having someone just like my friend bathing me, but I just thought to myself about how good Julie is with all the kids at playgroup and oddly enough I just relaxed right into it.
I also had some wonderful physical and occupational therapists. My favorite was Valerie, who had lived in Salt Lake for fourteen years before Anchorage and knew what my g—‘s were. She was very respectful about them too as she helped me put them on after re-teaching me how to shower myself (May I quit being humbled). I loved her because she was so positive. She claimed I could do anything I put my mind to, and at those moments I swallowed her words like they were the bread of life. I was so desperate to believe her as my left hand swung uselessly to my side, or as I propped the shower-head on my lap with my dead hand, “See,” said Valerie, “you can still use it all the time!”
But the best nurse ever was April the night nurse. Words to describe her: busy, cheerful, careful, honest, and above all compassionate. Twelve hours shifts through the night must surely be long, but April seemed to thrive on it all. From my bed I could hear the older and somewhat more insane patients coming out to greet her as their bed alarms annoyingly went off. You see, some of us got special orange signs on our doors that said we were in danger of falling, and if deemed untrustworthy, were monitored by a bed-alarm. This was a nasty shrill sound that could really give you a headache if you’d had brain surgery recently. I was only monitored like this once (lapse in judgment by poor nurse, I being less senile than all the other much older patients, and less lonely, because my husband stayed with me every night). Anyway, there was an older man and a woman, both with pneumonic coughs who seemed to quite like April as well. At times when I wanted her, I do believe I felt a little jealous.
But the reason I love her, is because when I would call her in the middle of the night for a bathroom run (and there were many), she always somehow found a way to treat me with respect, pathetic though I was. Afterward, she would gently close my gown in the back while I stood at the sink to wash (May the humility stop now!) There’s something about mirrors when you’re not feeling quite up to par that will attract your attention. I would gaze be-drugged at myself while my right hand grasped my left and pulled it up to lay it in the sink so I could care for it properly, and inevitably I would catch April’s eye in the mirror and would see such humanity and compassion there! She really cared that I was 29 and had lost the use of my arm, etc… So I pay homage to all wonderful night nurses. (By the way, the only way to say the word homage is with a French accent: silent h, soft soft g—as one of my professors at BYU would pronounce it).
Monday, September 13, 2010
Recollections: Opiates and Steroids
IN WHICH OUR VICTORIAN LADY TAKES OPIATES, BUT DOES NOT WEAR A FRILLY WHITE NIGHTGOWN
Just a belated note for those of you who do not yet know: after surgery I was taking prodigious amounts of an opiate called Oxycodone for head-aches and also some Steroids to keep swelling down ( Decamethezone—which I kept calling Death-mexizone on accident). The opiate thing is funny to me, in a very nerdy sort of way, because nineteenth-century art often shows ladies in frilly white night dresses passed out cold with a bottle of laudanum (a liquid opiate) on the bedside table. I wrote about it in my thesis actually. Opiates are known for their ability to give insane and brightly-colored dreams. I would like to say I had these, just for interest’s sake, but I believe the steroids counteracted this considerably. Unfortunately, I did not have the opportunity to physically beef up like a Russian or East German Olympian either.
Just a belated note for those of you who do not yet know: after surgery I was taking prodigious amounts of an opiate called Oxycodone for head-aches and also some Steroids to keep swelling down ( Decamethezone—which I kept calling Death-mexizone on accident). The opiate thing is funny to me, in a very nerdy sort of way, because nineteenth-century art often shows ladies in frilly white night dresses passed out cold with a bottle of laudanum (a liquid opiate) on the bedside table. I wrote about it in my thesis actually. Opiates are known for their ability to give insane and brightly-colored dreams. I would like to say I had these, just for interest’s sake, but I believe the steroids counteracted this considerably. Unfortunately, I did not have the opportunity to physically beef up like a Russian or East German Olympian either.
The Miraculous Account of "Sister Dahle's" Left Hand
IN WHICH OUR HEROINE USES HER FINGERS
One Wednesday last week I lifted my arms, including my gimpy left in a zombie-like posture. I could also grip my doctor's hand, but unfortunately could not let go. Our relationship was about to get a lot more intimate when he finally pried himself out of my iron grip. By Thursday my wonderful physical therapist, Maria, was re-teaching me to do simple tasks such as getting out of bed properly without injuring myself (May the Lord quit teaching me humility), and then later Maria brushed my arm and hand with a towel in the hopes of waking my nerves up. I must admit that at this point physical therapy was very different than what I originally thought it would be. If there was a work-out program of similar amount of physical activity, I could really get into it!
Anyway, later that night, my nerves came alive! 3 a.m., and I wake, thinking, “I can feel cotton under my fingertips—not Egyptian, and not more than a few hundred count, but I can feel it!" It was like my fingertips were electrically super-charged. The next morning, I could open and close my fist, a first since surgery. I know a lot of people (and Young Women) were praying for this thing specifically, so I thought you should all know what happened. In PeterPan, (obviously I am reading this currently) Captain Hook claims he is grateful to have his left hand cut off so he could have the wonderful use and versatility of his hook. The best part is that he says if he were a mother, he would wish for all his children to be born with a hook. Can you imagine? But we all know he is lying about his preference for that hook. I do, anyway. The left hand is a miraculous instrument. I am right-handed, but even righty’s know the use of an opposing hand for lathering on lotion or playing clapping games with their children.
One Wednesday last week I lifted my arms, including my gimpy left in a zombie-like posture. I could also grip my doctor's hand, but unfortunately could not let go. Our relationship was about to get a lot more intimate when he finally pried himself out of my iron grip. By Thursday my wonderful physical therapist, Maria, was re-teaching me to do simple tasks such as getting out of bed properly without injuring myself (May the Lord quit teaching me humility), and then later Maria brushed my arm and hand with a towel in the hopes of waking my nerves up. I must admit that at this point physical therapy was very different than what I originally thought it would be. If there was a work-out program of similar amount of physical activity, I could really get into it!
Anyway, later that night, my nerves came alive! 3 a.m., and I wake, thinking, “I can feel cotton under my fingertips—not Egyptian, and not more than a few hundred count, but I can feel it!" It was like my fingertips were electrically super-charged. The next morning, I could open and close my fist, a first since surgery. I know a lot of people (and Young Women) were praying for this thing specifically, so I thought you should all know what happened. In PeterPan, (obviously I am reading this currently) Captain Hook claims he is grateful to have his left hand cut off so he could have the wonderful use and versatility of his hook. The best part is that he says if he were a mother, he would wish for all his children to be born with a hook. Can you imagine? But we all know he is lying about his preference for that hook. I do, anyway. The left hand is a miraculous instrument. I am right-handed, but even righty’s know the use of an opposing hand for lathering on lotion or playing clapping games with their children.
Recollections: Temples and Stitchery
IN WHICH OUR NEUROTIC LADY’S HUSBAND ATTENDS THE TEMPLE AND RETURNS HOME WITH A BAD JOKE
The temple is a place of solace. I know this not only because I have attended frequently in my former blessed life, but because on Saturday my husband went and the difference in him before and after he went was almost palpable. Before he went, it was like he was ragged around the edges, and afterward, all his loose strings had been bound and stitched neatly into a tight hem. I am not referring to the state of his suit, which being a solid black color, is dangerous to wear on Sundays. Eva will find a way every Sacrament meeting to wipe snot, tears, or grubby hands on it. Also, she has become adept at flicking soy milk from her straw cup at us both. I am rather referring to the very edges of his soul, which will have need of spiritual patching after our last few weeks.
Upon his return, my husband found me here at the computer, and said to me, “Tara, You’re going to die…” My heart stopped beating. (“Man, I knew I shouldn’t have put that post about my patriarchal blessing up on my blog,” I thought). Jon eventually continued, “ …But not yet, You will have a long and healthy life.” Thud, thud. BAD JOKE!!! I would regard it as good manners to never make a joke like that around terminally ill cancer patients.
The temple is a place of solace. I know this not only because I have attended frequently in my former blessed life, but because on Saturday my husband went and the difference in him before and after he went was almost palpable. Before he went, it was like he was ragged around the edges, and afterward, all his loose strings had been bound and stitched neatly into a tight hem. I am not referring to the state of his suit, which being a solid black color, is dangerous to wear on Sundays. Eva will find a way every Sacrament meeting to wipe snot, tears, or grubby hands on it. Also, she has become adept at flicking soy milk from her straw cup at us both. I am rather referring to the very edges of his soul, which will have need of spiritual patching after our last few weeks.
Upon his return, my husband found me here at the computer, and said to me, “Tara, You’re going to die…” My heart stopped beating. (“Man, I knew I shouldn’t have put that post about my patriarchal blessing up on my blog,” I thought). Jon eventually continued, “ …But not yet, You will have a long and healthy life.” Thud, thud. BAD JOKE!!! I would regard it as good manners to never make a joke like that around terminally ill cancer patients.
Sunday, September 12, 2010
Recollections: Gimpy Arms and Astrocytomas
IN WHICH OUR HEROINE EVENTUALLY WAKES FROM ANESTHESIA AND DISCOVERS THAT SHE HAS LOST THE USE OF HER LEFT ARM.
Evidently, my tumor was pressed up against my motor cortex. When a person has neuro-surgery for a tumor, a sucking mechanism is used to get the foreign body out. My little parasitic tumor sends out tendrils to wrap around and into other areas of the brain, infesting my pre-motor area. And since it was on the right side of my brain, it is the left side that is affected. Luckily, my brilliant surgeon knew not to suck the whole tumor out, else I would be paralyzed. The good news is that I have since regained the use of my left arm due to a potent mix of physical therapy and prayers. Though I will admit that typing is still tortuously slow.
To digress, my tumor has a name: anaplastic astrocytoma. It means that I have malignant star-shaped cancer cells. It also may have been affecting my personality and my creativity. But my memory, math skills (such as I had), and my vocabulary skills remained intact because those live on the left side of my skull. This is a tumor that originates in the brain and does not usually spread to other parts of the body but does occasionally come back in the brain more aggressively later. However, this is not my plan! I will see my chemo oncologist this week and the assumption is that I will start chemo immediately, by pill and at home. I will start radiation within the next few weeks as well. I will be using a specific thing called a tomo-therapy machine, which luckily Providence Hospital has. (Not even Seattle has one of these babies.) Thank you, Conoco-Philips.
Evidently, my tumor was pressed up against my motor cortex. When a person has neuro-surgery for a tumor, a sucking mechanism is used to get the foreign body out. My little parasitic tumor sends out tendrils to wrap around and into other areas of the brain, infesting my pre-motor area. And since it was on the right side of my brain, it is the left side that is affected. Luckily, my brilliant surgeon knew not to suck the whole tumor out, else I would be paralyzed. The good news is that I have since regained the use of my left arm due to a potent mix of physical therapy and prayers. Though I will admit that typing is still tortuously slow.
To digress, my tumor has a name: anaplastic astrocytoma. It means that I have malignant star-shaped cancer cells. It also may have been affecting my personality and my creativity. But my memory, math skills (such as I had), and my vocabulary skills remained intact because those live on the left side of my skull. This is a tumor that originates in the brain and does not usually spread to other parts of the body but does occasionally come back in the brain more aggressively later. However, this is not my plan! I will see my chemo oncologist this week and the assumption is that I will start chemo immediately, by pill and at home. I will start radiation within the next few weeks as well. I will be using a specific thing called a tomo-therapy machine, which luckily Providence Hospital has. (Not even Seattle has one of these babies.) Thank you, Conoco-Philips.
Saturday, September 11, 2010
Recollections: A Whiny Revolution
IN WHICH OUR HEROINE CONTEMPLATES THE BOLSHEVIK REVOLUTION AND THE ACC NURSE’S CALL-BUTTON.
There it was, only a few hours after surgery, in the middle of the night, and that darned night nurse was ignoring me. “The key to all great revolutions,” I thought to myself, “lies in mob mentality. I must make all the patients rise up against this sluggish nurse.” My voice carries well. In highschool, my drama and speech teacher informed my class one day that I was the only one who didn't need to use a microphone. Hitler and his star propagandist Goebbels knew about the importance of getting the mob/group on your side, as did the Bolsheviks. It may be that my thoughts were less clear than indicated here, but you get the point. “Help,” I cried loudly. (Sob) (Sob), “My IV hurts so badly. Why won’t anyone come?” (Gut-wrenching Sob) (Sob) “I keep pushing the call button, why won’t you come? Please, help!” (Said pitifully). Star performance. I still feel very smug at how well this worked. I soon had, count them, 2 nurses calling a pharmacist on my behalf in what I must say were panicky voices. Later, my brother-in-law, a doctor by profession, confirmed what I already knew, ACC nurses are often less personable because most of their patients are hooked up to an iron lung… etc…
There it was, only a few hours after surgery, in the middle of the night, and that darned night nurse was ignoring me. “The key to all great revolutions,” I thought to myself, “lies in mob mentality. I must make all the patients rise up against this sluggish nurse.” My voice carries well. In highschool, my drama and speech teacher informed my class one day that I was the only one who didn't need to use a microphone. Hitler and his star propagandist Goebbels knew about the importance of getting the mob/group on your side, as did the Bolsheviks. It may be that my thoughts were less clear than indicated here, but you get the point. “Help,” I cried loudly. (Sob) (Sob), “My IV hurts so badly. Why won’t anyone come?” (Gut-wrenching Sob) (Sob) “I keep pushing the call button, why won’t you come? Please, help!” (Said pitifully). Star performance. I still feel very smug at how well this worked. I soon had, count them, 2 nurses calling a pharmacist on my behalf in what I must say were panicky voices. Later, my brother-in-law, a doctor by profession, confirmed what I already knew, ACC nurses are often less personable because most of their patients are hooked up to an iron lung… etc…
Recollections: Providence Hospital
IN WHICH OUR LADY OF THE BRAIN TUMOR WAKES AND DISCOVERS THAT SHE IS MUCH-LOVED
7 hours of brain surgery. In the waiting room: my husband, mother- and father-in-law, sister-in-law, my daughter, even my stake president. Then it was to ACC, Adult Critical Care (not my favorite place) and later, to my original room in the Neuro-unit. There were many gorgeous flower bouquets waiting for me there, cards, balloons, and even a giant goodies basket. A lovely detail: all my flowers seemed to match: bright purples, oranges, yellows. But maybe this was my altered state of mind. And of course, eventually there were well-wishers. I knew before I went in that I would have as many as 3 wards fasting for me, and it helped to know that. I have an amazing support system that continues on—and who read my blog—to you I pay verbal tribute.
Providence hospital is a Catholic institution. It has statues of Mary and the Crucifix placed throughout. At the beginning and end of each day, a prayer is said over the intercom. It is a good place, and I loved the prayers. Also, I spent a lot of time studying Catholic art while in college, and found those statues of Mary and the cross to be quite comforting. There is a medieval work called the Isenheim Altarpiece that shows a dreadful crucifix. It is the single most gruesome piece of religious artwork I know. Christ’s body is pocked, scarred, wasted, broken, bruised, diseased. It is absolutely abhorrent, but it was painted originally to remind the patients of Isenheim Hospital that Christ had already suffered all their afflictions, a message of hope, healing, and courage. Having now gone through a bit of my own Gethsemane, I appreciate more Isenheim’s message, and the faith it represents for the down-trodden, weary, and bleaguered.
I am not Catholic, but am LDS and very religious, so all the religious intonations were wonderful to me, and I believe, important for my speedy recovery.
7 hours of brain surgery. In the waiting room: my husband, mother- and father-in-law, sister-in-law, my daughter, even my stake president. Then it was to ACC, Adult Critical Care (not my favorite place) and later, to my original room in the Neuro-unit. There were many gorgeous flower bouquets waiting for me there, cards, balloons, and even a giant goodies basket. A lovely detail: all my flowers seemed to match: bright purples, oranges, yellows. But maybe this was my altered state of mind. And of course, eventually there were well-wishers. I knew before I went in that I would have as many as 3 wards fasting for me, and it helped to know that. I have an amazing support system that continues on—and who read my blog—to you I pay verbal tribute.
Providence hospital is a Catholic institution. It has statues of Mary and the Crucifix placed throughout. At the beginning and end of each day, a prayer is said over the intercom. It is a good place, and I loved the prayers. Also, I spent a lot of time studying Catholic art while in college, and found those statues of Mary and the cross to be quite comforting. There is a medieval work called the Isenheim Altarpiece that shows a dreadful crucifix. It is the single most gruesome piece of religious artwork I know. Christ’s body is pocked, scarred, wasted, broken, bruised, diseased. It is absolutely abhorrent, but it was painted originally to remind the patients of Isenheim Hospital that Christ had already suffered all their afflictions, a message of hope, healing, and courage. Having now gone through a bit of my own Gethsemane, I appreciate more Isenheim’s message, and the faith it represents for the down-trodden, weary, and bleaguered.
I am not Catholic, but am LDS and very religious, so all the religious intonations were wonderful to me, and I believe, important for my speedy recovery.
Morning Joys
IN WHICH THIS WOMAN WAKES AND FINDS SHE IS GLAD TO HAVE THE BREATH OF LIFE
And that she is happy to hear Eva’s happy morning giggles. In the book Peter Pan by J.M. Barrie, it is explained that fairies come alive when a baby laughs her first baby laugh. It is possible however, that my child has that super-ability every morning. She is so wildly happy to be rescued from her crib that whoever first opens her door in the morning is showered by the best baby sounds in the world, and lately, a “hiya!” as well. It is both wonderful and bittersweet to hear my mom or my husband open that door. It used to be me. But this morning I just felt glad to hear her.
And that she is happy to hear Eva’s happy morning giggles. In the book Peter Pan by J.M. Barrie, it is explained that fairies come alive when a baby laughs her first baby laugh. It is possible however, that my child has that super-ability every morning. She is so wildly happy to be rescued from her crib that whoever first opens her door in the morning is showered by the best baby sounds in the world, and lately, a “hiya!” as well. It is both wonderful and bittersweet to hear my mom or my husband open that door. It used to be me. But this morning I just felt glad to hear her.
Friday, September 10, 2010
Recollections: An Ordinary Morning
IN WHICH OUR LADY DOES THE DISHES AND CHECKS INTO THE NEURO-UNIT.
Friday morning dawned too early. I found my baby in poop-smeared jammies and crib. Bath-time and laundry first thing and then onto breakfast and tackling messy dishes. Oh exhaustion! Then it was time to go visit my new doctor. I did not pack a bag, but I should have. We went to meet with what I would soon find out was one of the best neuro-surgeons in the country, Dr. Estrada Bernard Jr. MD. It turns out that he lives here because he can spend more time with his family in Anchorage. One more blessing to add to the ever-growing tally. It all went so quickly! My PA-C Candace requested one of the best rooms for me, room 571. It had a large window looking out at a nice view. How strange to find myself suddenly there.
The next day was Saturday, a long day indeed, it being in my mind, only this: my last day before brain surgery. That night was long and sleepless. The song, “The Lord is My Shepherd” got me through the early morning hours. And yes, I was feeling dramatic when I applied the line “though I walk through the valley of the shadow of death” to myself. It was not too long though before I did make the discovery that I felt “like a lamb being led to the slaughter” (Isaiah 53/Mosiah 14)Really, I did. I felt like I had no control whatsoever.
Friday morning dawned too early. I found my baby in poop-smeared jammies and crib. Bath-time and laundry first thing and then onto breakfast and tackling messy dishes. Oh exhaustion! Then it was time to go visit my new doctor. I did not pack a bag, but I should have. We went to meet with what I would soon find out was one of the best neuro-surgeons in the country, Dr. Estrada Bernard Jr. MD. It turns out that he lives here because he can spend more time with his family in Anchorage. One more blessing to add to the ever-growing tally. It all went so quickly! My PA-C Candace requested one of the best rooms for me, room 571. It had a large window looking out at a nice view. How strange to find myself suddenly there.
The next day was Saturday, a long day indeed, it being in my mind, only this: my last day before brain surgery. That night was long and sleepless. The song, “The Lord is My Shepherd” got me through the early morning hours. And yes, I was feeling dramatic when I applied the line “though I walk through the valley of the shadow of death” to myself. It was not too long though before I did make the discovery that I felt “like a lamb being led to the slaughter” (Isaiah 53/Mosiah 14)Really, I did. I felt like I had no control whatsoever.
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