When Keith, Melissa and I arrive at Beaumont Hospital in Royal Oak just before noon for a biopsy of one of the dozen nodules discovered in my left lung, I am eleven days post craniotomy. The morning was spent at the neurosurgeon's office and we are feeling pretty slick. This can be attributed to the fact that despite being warned before we arrived that it was highly unlikely my incision would be healed enough to remove my surgical staples (especially for someone my age), my office visit turned out to be much more than an exercise in humoring my daughter who had insisted they give us an appointment to at least look at my head. My incision was healing remarkably well and all 24 staples were removed.
We discuss reducing some of my medications with the neurosurgeon: No - I can't stop taking the anti-swelling and anti-seizure medications. Yes - I can reduce the pain killers in an attempt to be more alert. Being in a fog has been bothering me. In addition, I am trying not to remain completely dependent on Keith and Melissa for what feels like an endless period of time.
Dr. Olson advises me that I need to accept there will probably be a "new normal" for me going forward. I am not pleased to hear this but figure I will deal with it later. I have a procedure to get through in the afternoon before I try to tackle every foreseeable hurdle. There will be plenty of time to demonstrate I am NOT like most fifty-something women or other cancer patients. Thank goodness I keep my mouth shut (or as my deceased father-in-law would categorize it: "at least I didn't let my big mouth overload my ass") since a short time later I crumple while at Beaumont for the lung biopsy.
In hindsight, I should have seen it coming. The entire time this crazy situation was unfolding, a family member has been present to help me, assure me, support me. I have never been left alone. That is until I am taken to a changing room with lockers and instructed to get into a hospital gown. Some one comes to take me to a holding area to prep me for my lung biopsy. I ignore the inclination to ask if my family can accompany me. Now that I am at Beaumont as an outpatient, I am dealing with staff I do not know and who don't know me and I begin to realize the value of some one in my family running offense for me.
I am led to a bed only for the staff person to find someone else already occupying it when the curtain is pulled back. We begin to wander up and down an area looking for a usable bed (one that is clean and fresh looking if I may say) but there are either no empty beds or ones that appear to have been utilized already but not changed yet.. This does not help to assure me and I think to myself "You have got to be kidding me."
I decide to explain that need to sit down as I am still on Percocet and offer to go back to where I was sitting previously. Three staff persons hold a conversation about what the deal is while I am still standing there thinking they do not have a very good handle on things. My apprehension level rises and I repeat that I need to sit down. I am led to a curtained area that has a chair but it is next to an occupied bed. I give the gal an incredulous look. When I suggest they are obviously not ready for me, this elicits some one to roll a bed towards me and offer me to lay down. Finally!
I am quickly surrounded by three different people: one who wants to obtain a medical history, one who wants to take my blood pressure and insert a catheter, and one who has some paperwork for me to fill out. I mistakenly think the paperwork is related strictly to a release for the procedure and I indicate I would prefer to hear about it and sign the consent forms with my husband and daughter present. I am informed that they are striving to insure that patients are not "over run" by their families and an effort to is being made to discuss everything with the patient independently.
A man begins to go over my procedure and it's possible risks. My lung could collapse. If it does, I will have to be admitted to the hospital. However, once I have two x-rays two hours apart that demonstrate my lung is not collapsed, I will be able to go home - after I have had something to eat and drink and use the restroom. Good, let's get this show on the road since it is past lunch time and once again I have not eaten since dinner the day before. I sign the consent forms and the man leaves.
One nurse tells me my family will be brought back eventually before I head into my procedure but asks that I fill out her forms first. After I fill them out, they are taken away and a third nurse attempts to insert a catheter. She clucks over the bruises up and down my arms. I encourage her to just "get it done."
The second nurse quickly returns to ask me to finish one of my forms which is incomplete. She hands me a sheet related to pregnancy. I show her how I have marked the form as "not pregnant". She asks me how I know I am not pregnant and I reply that I am 52 years old. She inquires if I am still menstruating and when I indicate that I am, she points to several questions on the sheet that appear in a "if x, then y format" that I have not answered. I look at her in disbelief so she offers to "help" me fill the form out.
When was your last period? "Ma'am, I am not even sure what day it is." When was the last time you had sex? "Lady, I can't even tell you how long I was in the hospital and exactly when I got out." I attempt to express to her that even if I was pregnant (which I highly doubt), at this point in my life, I am uninterested in having a baby and I will sign what ever she wants to that effect. She presses me by advising me that often in "these situations" when someone is faced with a terrible medical issue, people will frequently change their feelings about a new life.
I assure her that regardless of the current situation, I would never consider giving birth to another child as I carry a lethal gene disease - which by the way already took the life of one of my children. Therefore, I would not plan on carrying any pregnancy to term, so would she please let it go. She concludes the matter by informing she will handle this whole thing by simply running a pregnancy test!
I start to have a complete meltdown. I try to reiterate that if I test positive or not, I plan to proceed with the lung biopsy and I will sign off on any possible harm to any potential fetus. I add "Do you have any idea what I have been through recently? I went to the emergency room with a headache and found out I have a stage 4 brain tumor. I had that metastasized brain tumor resected via craniotomy recently and am now waiting to find out if my lungs are loaded with cancer too." She indicates that she is aware since I am here today to have a lung biopsy. She is merely trying to follow procedure.
Looking back, I realize my distress was based on being by myself for the first time since I got on this crazy train. I recognize that I had been putting on a brave front for my husband and daughter and a little show of emotion was long over due. Of course I fight back the tears and tell them to bring back Keith & Melissa (which will force me to buck up). They sit with me until I am called for my procedure at 1 PM.
In the procedure room, a new nurse introduces her self. Her name is Kelly. Really? The tears start all over again. Another nurse steps in and attempts to distract me. She asks me polite questions about myself and my family. It works until after talking about my wonderful husband Keith and my fabulous daughter Melissa, she inquires if I have any other children or is Melissa an only child. Usually I can handle this question after all these years of practice with grace - but not today. Regrettably, I start crying again.
In fact, I pretty much cry throughout the entire procedure. The staff asks if I am in pain and if I need more medication. I assure them I am physically fine and convey I am just having a rough day. I am advised I will need to hold still for the biopsy and I convince them I can handle it. The local anesthesia and twilight medication are effective and the needle aspiration is not painful. Twenty five minutes later, the radiologist indicates he has obtained three samples and I am finished. They take me for an x-ray and then wheel me back to the curtained area where I left Keith and Melissa. Just their presence fills me with a sense of peace and I am able to fall asleep.
Two hours later, I am awakened for another x-ray. It shows my lung is intact. I am asked if I am able to eat. "Yes, Ill take anything." Around 3:30 PM, they bring me grape juice (ugh!) and a chicken salad sandwich on white bread (double ugh!) but I scarf it down as I am famished. Once I manage to get up and use the restroom, I am released. I can't get my clothes on fast enough.
I leave sporting only a band aid on my chest but emotionally exhausted. Later on, I discover my melt down (which was over heard through the curtains) is being recounted amongst the families of other patients in a loud enough tone for my family to hear the discussion. My husband and daughter would like to approach the person talking about me but restrain themselves. They are relieved to learn I never heard anything that was said about me but they feel emotionally exhausted too. We are happy to head for the peace and quiet of our own home for some rest and recuperation.
Thankfully, the next week is blissfully free of any further hospital or doctor visits. Within a few days, I am ready to resume my more typical invincible persona. Watch out melanoma - get ready for an ass kicking!
Thursday, September 29, 2011
Wednesday, September 28, 2011
Gamma Knife Experience
After choosing Dr. Flaherty to be my "cancer quarterback" on August 23rd, he quickly demonstrates that he is going to have me move full speed ahead towards kicking melanoma's ass. Within a week, I am on the schedule to receive my gamma knife radio-surgery.
Keith, Melissa and I head down to Harper Hospital in the Detroit Medical Center before the crack of dawn on the 30th. I check in at 5:45 AM and am quickly taken into a holding area, gowned and settled into a bed. One nurse takes some blood, a second checks my blood pressure and gives me an EEG, while a third goes over my medications and reviews my medical history. The procedure is reviewed and an explanation of what I can expect is provided.
After my prep is completed, Keith and Melissa are brought back to sit with me until I head to pre-op where I will be sedated. Dr. Kim (my radiation oncologist) and several other team members chat with me as they wait for my sedative to kick in (little do they know I can talk endlessly and it make take a while for me to get sleepy).
I am asked who has accompanied me today: "My husband and daughter." An inquiry is made regarding my daughter: Is she in school? "No, she lives and works out East." What does she do? "She works in the ExtraCare department at CVS's corporate headquarters in RI."
The conversation takes it's typical path: How old is she? "35." Now comes the expected incredulous follow up: "You have a 35 year old daughter?" To avoid the anticipated: You don't look old enough, I respond with my classic retort - "Yes, she was a present for my tenth birthday, which makes me 45 and if you are buying that, I have some other things I'd like to sell you."
Dr. Kim is in interested in learning about Melissa's education and career path. We discuss daughters who are highly motivated Type A personalities (he has one too) and the conversation turns to the benefits and drawbacks of parenting a driven and focused offspring (never needs to be told to do their homework but definitely needs reminding of who is in charge - the parents, not the clever child). We share a chuckle and I am off to la la land.
When I come back to consciousness, there is a stereotactic frame attached to my head. A tight fitting is required to eliminate any head movement while I am in the gamma knife machine to insure the radiation beams converge precisely to the targeted area of my tumor bed and not on any normal brain tissue. Despite knowing four pins would be utilized to secure this "halo" (makes it sound sort of angelic, doesn't it?), I am taken aback by what I see.
All I can think of is a horror film where the scene is shot from the perspective of a character wearing a mask and how things appear from the character's perspective. Remember movies like Friday the 13th, where it shows the view as Jason would see it through his mask? My view is completely blocked by the frame and I must look sideways to see. I verbalize to Keith and Melissa that I feel like Hannibal Lecter from "Silence of the Lambs". Keith immediately attempts to lighten the situation by insisting I look more like Dr. Emmet Brown from "Back to the Future".
Next, measurements of my head with the frame on are taken to help plan the dose for my treatment. Imaging is performed to precisely locate - within 0.1 millimeter (yes 1/10th of a millimeter)- the targets for my radiation. An entire team consisting of a neurosurgeon, a neurologist, two medical physicists, and a computer specialist converge to determine the correct angle of the trajectory to be used based on the shape of my head and the location of the tissue to be destroyed. This is called "dosimetry planning" and takes one to two hours to be computed.
After what seems like forever (imagine trying to sit comfortably with large metal frame screwed into your head), I am whisked away to the treatment room. There are two physicists present. They instruct me to move onto the "couch" and sit. I laugh that it is called this as it is a hard flat surface with a large area near the top that is cut out to accommodate laying down flat with the frame resting in the space.
The physicists inform me that they have the ability to pipe in music and one inquires if I have any preferences as to what I would like to have played. I ask if they have any rap - maybe something by Eminem like "Not Afraid". My request is met by dead silence. I indicate that I would be happy to entertain any suggestions they have as they do this all day and might have something inspirational in mind. One of the gentlemen assures me he has a CD here of his own that he thinks I would enjoy. I figure what the heck. (FYI: He starts with Michael Buble's recording of "Feeling Good." Upon hearing this, Keith ran out and purchased every single Michael Buble album ever produced. We listen to them frequently).
Next, they explain that although they will be leaving the room when the radiation is applied, they will be utilizing closed circuit television to observe me. They assure me that I will be able to communicate with them through out the procedure via a two-way intercom system should I want to stop at any point.
Now that the "pleasantries" are over, they approach me with metal arms that need to be attached to the sides of my frame. These arms will be used to hold my head in the correct position so my frame can be connected to a steel helmet inside the machine. They slide the arms into the side slots of my frame and begin hand screwing them in place. I think to myself "Don't you have some kind of battery operated screw driver like a Skil Twist Cordless you could use?" Little do I know how often I would ask myself that over the next hour and a half since the arms are removed and replaced numerous times.
The physicists help me lay down once the arms are securely attached and guide my head as the couch slides into the gamma knife machine. They advise me to relax my neck (yeah right) so they can maneuver the frame into the correct position for it to lock in place. The helmet has several rows labeled by letter and numerous holes labeled by number which are used to point all 201 beams of radiation to the targeted area at the correct angle using computer technology.
Each dose of radiation lasts from one to four minutes. After 15 cycles of attaching arms, having the physicists measure the placement, switch sides and re-measure each placement, laying me down, sliding me in and locking me in place, leaving the room, administering the radiation, coming back, disengaging my head, pulling me out, sitting me up and removing the arms, I am finally finished with my treatment after an hour and a half.
I am taken to recovery to be observed for any complications. I am finally allowed to eat - thank goodness Melissa has packed a cooler with food I would enjoy. I have not eaten since the evening before and I am starving as it is well past lunch time. (We learned the hard way that beggars can't be choosers following my first lung biopsy when I amazed my family by inhaling food and drink I detest).
The joy of eating is quickly replaced with discomfort from the holes in my head where the frame was attached. We request ice packs and are thrilled when shortly after we receive them, I am told I may get dressed and leave. As we head home, I focus on how this treatment will surely increase the odds of my not only being a cancer survivor but a cancer thriver.
Keith, Melissa and I head down to Harper Hospital in the Detroit Medical Center before the crack of dawn on the 30th. I check in at 5:45 AM and am quickly taken into a holding area, gowned and settled into a bed. One nurse takes some blood, a second checks my blood pressure and gives me an EEG, while a third goes over my medications and reviews my medical history. The procedure is reviewed and an explanation of what I can expect is provided.
After my prep is completed, Keith and Melissa are brought back to sit with me until I head to pre-op where I will be sedated. Dr. Kim (my radiation oncologist) and several other team members chat with me as they wait for my sedative to kick in (little do they know I can talk endlessly and it make take a while for me to get sleepy).
I am asked who has accompanied me today: "My husband and daughter." An inquiry is made regarding my daughter: Is she in school? "No, she lives and works out East." What does she do? "She works in the ExtraCare department at CVS's corporate headquarters in RI."
The conversation takes it's typical path: How old is she? "35." Now comes the expected incredulous follow up: "You have a 35 year old daughter?" To avoid the anticipated: You don't look old enough, I respond with my classic retort - "Yes, she was a present for my tenth birthday, which makes me 45 and if you are buying that, I have some other things I'd like to sell you."
Dr. Kim is in interested in learning about Melissa's education and career path. We discuss daughters who are highly motivated Type A personalities (he has one too) and the conversation turns to the benefits and drawbacks of parenting a driven and focused offspring (never needs to be told to do their homework but definitely needs reminding of who is in charge - the parents, not the clever child). We share a chuckle and I am off to la la land.
When I come back to consciousness, there is a stereotactic frame attached to my head. A tight fitting is required to eliminate any head movement while I am in the gamma knife machine to insure the radiation beams converge precisely to the targeted area of my tumor bed and not on any normal brain tissue. Despite knowing four pins would be utilized to secure this "halo" (makes it sound sort of angelic, doesn't it?), I am taken aback by what I see.
All I can think of is a horror film where the scene is shot from the perspective of a character wearing a mask and how things appear from the character's perspective. Remember movies like Friday the 13th, where it shows the view as Jason would see it through his mask? My view is completely blocked by the frame and I must look sideways to see. I verbalize to Keith and Melissa that I feel like Hannibal Lecter from "Silence of the Lambs". Keith immediately attempts to lighten the situation by insisting I look more like Dr. Emmet Brown from "Back to the Future".
Next, measurements of my head with the frame on are taken to help plan the dose for my treatment. Imaging is performed to precisely locate - within 0.1 millimeter (yes 1/10th of a millimeter)- the targets for my radiation. An entire team consisting of a neurosurgeon, a neurologist, two medical physicists, and a computer specialist converge to determine the correct angle of the trajectory to be used based on the shape of my head and the location of the tissue to be destroyed. This is called "dosimetry planning" and takes one to two hours to be computed.
After what seems like forever (imagine trying to sit comfortably with large metal frame screwed into your head), I am whisked away to the treatment room. There are two physicists present. They instruct me to move onto the "couch" and sit. I laugh that it is called this as it is a hard flat surface with a large area near the top that is cut out to accommodate laying down flat with the frame resting in the space.
The physicists inform me that they have the ability to pipe in music and one inquires if I have any preferences as to what I would like to have played. I ask if they have any rap - maybe something by Eminem like "Not Afraid". My request is met by dead silence. I indicate that I would be happy to entertain any suggestions they have as they do this all day and might have something inspirational in mind. One of the gentlemen assures me he has a CD here of his own that he thinks I would enjoy. I figure what the heck. (FYI: He starts with Michael Buble's recording of "Feeling Good." Upon hearing this, Keith ran out and purchased every single Michael Buble album ever produced. We listen to them frequently).
Next, they explain that although they will be leaving the room when the radiation is applied, they will be utilizing closed circuit television to observe me. They assure me that I will be able to communicate with them through out the procedure via a two-way intercom system should I want to stop at any point.
Now that the "pleasantries" are over, they approach me with metal arms that need to be attached to the sides of my frame. These arms will be used to hold my head in the correct position so my frame can be connected to a steel helmet inside the machine. They slide the arms into the side slots of my frame and begin hand screwing them in place. I think to myself "Don't you have some kind of battery operated screw driver like a Skil Twist Cordless you could use?" Little do I know how often I would ask myself that over the next hour and a half since the arms are removed and replaced numerous times.
The physicists help me lay down once the arms are securely attached and guide my head as the couch slides into the gamma knife machine. They advise me to relax my neck (yeah right) so they can maneuver the frame into the correct position for it to lock in place. The helmet has several rows labeled by letter and numerous holes labeled by number which are used to point all 201 beams of radiation to the targeted area at the correct angle using computer technology.
Each dose of radiation lasts from one to four minutes. After 15 cycles of attaching arms, having the physicists measure the placement, switch sides and re-measure each placement, laying me down, sliding me in and locking me in place, leaving the room, administering the radiation, coming back, disengaging my head, pulling me out, sitting me up and removing the arms, I am finally finished with my treatment after an hour and a half.
I am taken to recovery to be observed for any complications. I am finally allowed to eat - thank goodness Melissa has packed a cooler with food I would enjoy. I have not eaten since the evening before and I am starving as it is well past lunch time. (We learned the hard way that beggars can't be choosers following my first lung biopsy when I amazed my family by inhaling food and drink I detest).
The joy of eating is quickly replaced with discomfort from the holes in my head where the frame was attached. We request ice packs and are thrilled when shortly after we receive them, I am told I may get dressed and leave. As we head home, I focus on how this treatment will surely increase the odds of my not only being a cancer survivor but a cancer thriver.
Sunday, September 25, 2011
Chapter 7
For the first 48 hours following my surgery, folks from neurology come and repeatedly check me for any sign of neurological impairment. I appear to have survived my craniotomy unscathed as I quickly memorize the routine and start performing certain portions of the exam undirected. I even begin naming certain moves (i.e. when asked to hold my arms out in front of me, I call it "the Jesus move").
By Sunday morning, I am able to sit up and feed myself. Now that I am able to chew absent of great discomfort, I am thrilled at the prospect of eating "real food" that I have selected. Quite frankly, the applesauce I started with and the sherbet (added to the menu to pacify me when my appreciation of the former quickly wore off) were no longer cutting it.
On Sunday, after demonstrating that I am able to stand alone and walk to the bathroom with assistance, it is determined that I am stable enough to leave the ICU. I am moved to a room for non-critical neurology patients on Sunday afternoon. While this is a good sign of my progress, it means I will no longer have a room to myself. My family's elation regarding this positive move forward is short lived because the woman I will be sharing a room with turns out to be a bit much.
My room mate appears to be quite upset. It quickly becomes apparent that she is alone with no family in attendance. She launches into a tirade of woe but no one appears able to soothe her as she is verbalizing her troubles in a foreign language. An attempt to find someone who can understand her fails. The poor woman is looking in the closet for her clothes and is distressed to find the closet empty. A nurse is sent to try and convince her to remain in bed. It is determined that the patient might have to be be sedated.
This situation is obviously "not going to work." Melissa goes home to obtain some noise canceling headphones for me to wear which should allow me to sleep by blocking out the sound of the unfolding drama. Keith leaves to look into the possibility of getting me into a private room.
In their absence, I hear the following exchange: the nurse explains that she is happy to help her but she must speak English for the nurse to understand what she wants. The woman says something about punching and the nurse inquires why the woman would want to hit her. The woman talks about "big trouble" and the nurse affirms that it would definitely create a problem if the woman hit her. The nurse uses the speaker to let a coworker know that they might have to utilize restraints for this patient.
I am intent on this being resolved (which will provide some peace so I can rest) so I focus on finding a solution. As the exchange between the nurse and the woman continues, I begin to understand that the woman is trying to get up and get dressed because she thinks she must go to work. She is distressed because if she doesn't "punch in" - she will be in big trouble. My suspicion is that she is slightly demented and is confused as to when this is and where she is.
I call out to the nurse and explain what I think might be going on. Of course it's easier to be objective when you are on the outside looking in - even if you just had a brain tumor removed - as it has not affected my hearing, and all I want is for them to calm her down.
Melissa returns with the noise canceling headphones and in conjunction with a pair of earplugs, I am able to fall asleep. Go Team Studzinski!
By Sunday morning, I am able to sit up and feed myself. Now that I am able to chew absent of great discomfort, I am thrilled at the prospect of eating "real food" that I have selected. Quite frankly, the applesauce I started with and the sherbet (added to the menu to pacify me when my appreciation of the former quickly wore off) were no longer cutting it.
On Sunday, after demonstrating that I am able to stand alone and walk to the bathroom with assistance, it is determined that I am stable enough to leave the ICU. I am moved to a room for non-critical neurology patients on Sunday afternoon. While this is a good sign of my progress, it means I will no longer have a room to myself. My family's elation regarding this positive move forward is short lived because the woman I will be sharing a room with turns out to be a bit much.
My room mate appears to be quite upset. It quickly becomes apparent that she is alone with no family in attendance. She launches into a tirade of woe but no one appears able to soothe her as she is verbalizing her troubles in a foreign language. An attempt to find someone who can understand her fails. The poor woman is looking in the closet for her clothes and is distressed to find the closet empty. A nurse is sent to try and convince her to remain in bed. It is determined that the patient might have to be be sedated.
This situation is obviously "not going to work." Melissa goes home to obtain some noise canceling headphones for me to wear which should allow me to sleep by blocking out the sound of the unfolding drama. Keith leaves to look into the possibility of getting me into a private room.
In their absence, I hear the following exchange: the nurse explains that she is happy to help her but she must speak English for the nurse to understand what she wants. The woman says something about punching and the nurse inquires why the woman would want to hit her. The woman talks about "big trouble" and the nurse affirms that it would definitely create a problem if the woman hit her. The nurse uses the speaker to let a coworker know that they might have to utilize restraints for this patient.
I am intent on this being resolved (which will provide some peace so I can rest) so I focus on finding a solution. As the exchange between the nurse and the woman continues, I begin to understand that the woman is trying to get up and get dressed because she thinks she must go to work. She is distressed because if she doesn't "punch in" - she will be in big trouble. My suspicion is that she is slightly demented and is confused as to when this is and where she is.
I call out to the nurse and explain what I think might be going on. Of course it's easier to be objective when you are on the outside looking in - even if you just had a brain tumor removed - as it has not affected my hearing, and all I want is for them to calm her down.
Melissa returns with the noise canceling headphones and in conjunction with a pair of earplugs, I am able to fall asleep. Go Team Studzinski!
Thursday, September 22, 2011
Perception Verses Reality
I recently saw pictures that were taken of me by Terese (one of my 5 sisters) while I was in the hospital. Talk about a revelation. I am astonished by my appearance. No wonder my husband and daughter were so upset. Now that I have seen what they were seeing, I fully comprehend the gravity of my situation from their point of view. Fortunately for them, I looked considerably better as each day passed.
As unfathomable as it sounds, at the time, in my mind, there was no consideration of danger for myself, only concern that I was causing Keith and Melissa a great deal of stress. I am mystified that I could consciously take actions to protect them but not equate the situation to anything I had to fear. Here are excerpts from a text I sent to Debbie (Keith's cousin who is a very close friend) on Thursday morning after my body scan was done:
Astoundingly, I was able to exist in two opposing worlds: cognizant of how worried my family was for me (even though I don't recall them being so visibly distressed) but concurrently being almost detached about what was happening to me. I honestly believe that subconsciously my mind allowed me to self-preserve by blocking out all the "facts" related to my medical crisis: surgical morbidity rates for craniotomies, stage IV brain cancer survival rates, potential side effects of treatment, etc.
As unfathomable as it sounds, at the time, in my mind, there was no consideration of danger for myself, only concern that I was causing Keith and Melissa a great deal of stress. I am mystified that I could consciously take actions to protect them but not equate the situation to anything I had to fear. Here are excerpts from a text I sent to Debbie (Keith's cousin who is a very close friend) on Thursday morning after my body scan was done:
"Keith is beginning to look & sound a little panicky"
"mite need u 2 give my hubby & daughter (melissa flew in this AM) some reassurance so they don't stroke out on me"
Astoundingly, I was able to exist in two opposing worlds: cognizant of how worried my family was for me (even though I don't recall them being so visibly distressed) but concurrently being almost detached about what was happening to me. I honestly believe that subconsciously my mind allowed me to self-preserve by blocking out all the "facts" related to my medical crisis: surgical morbidity rates for craniotomies, stage IV brain cancer survival rates, potential side effects of treatment, etc.
Not surprisingly, I was determined to stand up quickly after surgery. They kept telling me no...so I cooked up a little scheme...and it worked! I "relented" and said that instead of standing up, I was willing to settle for a hug from my husband (part of our daily routine is that he hugs me everyday before work). For those of you that know Keith, hugging him requires standing up! I expected that to make him feel better. Little did I know that it would cause Keith to crumble slightly. Of course my daughter then inquired if she was chopped liver and wondered if I minded hugging her also - which allowed us to chuckle a little which was good. Isn't it amazing how humor is such good medicine?
Friday, September 16, 2011
Full Disclosure: Peggy is not the Best Patient
After reading my recent blog posts, my husband and daughter have suggested I have omitted some details - possibly those that demonstrate that I might not be the best patient and may possibly have been giving some people a bit of a hard time. Who me? Trying to convince people to do what I want? Being a smarty-pants? Shocking!
Surely, the only reason I previously failed to disclose some interactions is because I forgot about them (not because it made me look bad). In an effort to provide a fair and balanced summary, I will now share some of the things that have been pointed out to me, which I previously failed to relate.
During a pre-surgical neuro check, I was asked how much change I would receive if I bought something at CVS for $8.50 and I paid with a ten-dollar bill. After sharing that my daughter works for CVS, I insisted that the question was irrelevant since I would have used $8 in Extra Bucks when I made my purchase. Keith thought I was bullshitting to stall for more time until I figured the answer out. Ironically, when we arrived home from the hospital, Melissa found my most recent Extra Bucks receipt on my desk - which of course showed I did indeed have $8 in Extra Bucks to spend.
"You can not take a shower" standoff
Before they even cut my head open, I was pestering the nurses to let me take a shower. I was told that since most patients in ICU are typically not mobile, there are no facilities for patients to shower in their rooms. Frequently, many patients aren't even speaking because they are on vents or are unconscious. Sadly for the hospital staff, I am quite vocal.
I insist there must be some place in the hospital for patients to take a shower. It is explained that I CANNOT leave the ICU. I inform the nurses that some medication I am having administered has given me diarrhea and quite frankly “My ass is on fire” so I need to soak in some water to avoid a skin breakdown. I inquire if they know what a "Sitz bath" is and I suggest they go to the maternity ward to see if they can obtain one for me to use.
Ultimately, I make it clear that at this point in our life, my husband would do anything for me. I point to the big sink in the counter in my room and let them know that I am going to have Keith to fill up the sink and ask him to lift me up and sit me in it. I convince them I am quite serious and plead with them to make it happen.
At 5 AM on Friday morning, a nurse named Krystal comes to tell me that I am going to be allowed to use the staff shower facility (YES!). However, I cannot get my head wet or wash my hair because there are no blow dryers and my hair needs to be dry when they come to place the markers on my head. I assure her I couldn't care less about that. Afterward, two of my other nurses make sure I realize what a big deal this was as it is the ONLY time Krystal has ever given someone a shower. I can't resist pointing out that I gave myself the shower and she merely watched (plus there aren’t any patient showers in the ICU) but I clearly convey my gratitude. At least I'm pretty sure I did.
During one of my neurological assessments after surgery, when I was asked if I knew where I was, I am told I responded "In hell!" Was that sarcastic? Heck, my mother repeatedly scolded me for my bad behavior as I was growing up by saying: "Peggy, you're going to go to hell if you don't change your ways." (Let's just say I was a bit of a handful when I was a teenager.) Thankfully, the neuro guy didn't interpret my response as a sign that I thought I was dead or I didn't know where I was at the time. I was just equating my pain level to something relative to me.
When prompted to smile to demonstrate I still possessed the ability to control my facial muscles, I refused and asked "Seriously?" At the time, it was painful to make facial expressions (actually it hurt to do anything - believe me the first time I had to sneeze or blow my nose was no picnic). I was of the opinion that sticking out my tongue was a much more appropriate way to prove I was fully able to function.
"You have to stay in bed" drama
After the craniotomy, I insisted they remove my catheter and allow me to use the bathroom. I understood that I needed to be assisted since I was pretty drugged up after my surgery and my overall situation made me a fall risk. Plus, I had to be unhooked from my monitors and the inflatable wraps on my legs being utilized to prevent a blood clot - not to mention the IV pole that had to accompany me. Apparently, alarms had to be set to alert the staff after I got out of bed by myself one time during the night (sorry man, couldn't wait - honestly have no clue how I did that).
The hospital was probably relieved when Keith and Melissa took me home. Sadly for my husband and daughter, the hard part was just beginning, as there would be no more around the clock nurses. Thankfully there were two of them to trade off shifts so one could sleep for four hours while the other covered meds every other hour. Check out my drug arsenal below - for which an Excel spreadsheet was used to keep track of what was dispensed and when (hooray for my uber-organized daughter).
Surely, the only reason I previously failed to disclose some interactions is because I forgot about them (not because it made me look bad). In an effort to provide a fair and balanced summary, I will now share some of the things that have been pointed out to me, which I previously failed to relate.
During a pre-surgical neuro check, I was asked how much change I would receive if I bought something at CVS for $8.50 and I paid with a ten-dollar bill. After sharing that my daughter works for CVS, I insisted that the question was irrelevant since I would have used $8 in Extra Bucks when I made my purchase. Keith thought I was bullshitting to stall for more time until I figured the answer out. Ironically, when we arrived home from the hospital, Melissa found my most recent Extra Bucks receipt on my desk - which of course showed I did indeed have $8 in Extra Bucks to spend.
"You can not take a shower" standoff
Before they even cut my head open, I was pestering the nurses to let me take a shower. I was told that since most patients in ICU are typically not mobile, there are no facilities for patients to shower in their rooms. Frequently, many patients aren't even speaking because they are on vents or are unconscious. Sadly for the hospital staff, I am quite vocal.
I insist there must be some place in the hospital for patients to take a shower. It is explained that I CANNOT leave the ICU. I inform the nurses that some medication I am having administered has given me diarrhea and quite frankly “My ass is on fire” so I need to soak in some water to avoid a skin breakdown. I inquire if they know what a "Sitz bath" is and I suggest they go to the maternity ward to see if they can obtain one for me to use.
Ultimately, I make it clear that at this point in our life, my husband would do anything for me. I point to the big sink in the counter in my room and let them know that I am going to have Keith to fill up the sink and ask him to lift me up and sit me in it. I convince them I am quite serious and plead with them to make it happen.
At 5 AM on Friday morning, a nurse named Krystal comes to tell me that I am going to be allowed to use the staff shower facility (YES!). However, I cannot get my head wet or wash my hair because there are no blow dryers and my hair needs to be dry when they come to place the markers on my head. I assure her I couldn't care less about that. Afterward, two of my other nurses make sure I realize what a big deal this was as it is the ONLY time Krystal has ever given someone a shower. I can't resist pointing out that I gave myself the shower and she merely watched (plus there aren’t any patient showers in the ICU) but I clearly convey my gratitude. At least I'm pretty sure I did.
During one of my neurological assessments after surgery, when I was asked if I knew where I was, I am told I responded "In hell!" Was that sarcastic? Heck, my mother repeatedly scolded me for my bad behavior as I was growing up by saying: "Peggy, you're going to go to hell if you don't change your ways." (Let's just say I was a bit of a handful when I was a teenager.) Thankfully, the neuro guy didn't interpret my response as a sign that I thought I was dead or I didn't know where I was at the time. I was just equating my pain level to something relative to me.
When prompted to smile to demonstrate I still possessed the ability to control my facial muscles, I refused and asked "Seriously?" At the time, it was painful to make facial expressions (actually it hurt to do anything - believe me the first time I had to sneeze or blow my nose was no picnic). I was of the opinion that sticking out my tongue was a much more appropriate way to prove I was fully able to function.
"You have to stay in bed" drama
After the craniotomy, I insisted they remove my catheter and allow me to use the bathroom. I understood that I needed to be assisted since I was pretty drugged up after my surgery and my overall situation made me a fall risk. Plus, I had to be unhooked from my monitors and the inflatable wraps on my legs being utilized to prevent a blood clot - not to mention the IV pole that had to accompany me. Apparently, alarms had to be set to alert the staff after I got out of bed by myself one time during the night (sorry man, couldn't wait - honestly have no clue how I did that).
The hospital was probably relieved when Keith and Melissa took me home. Sadly for my husband and daughter, the hard part was just beginning, as there would be no more around the clock nurses. Thankfully there were two of them to trade off shifts so one could sleep for four hours while the other covered meds every other hour. Check out my drug arsenal below - for which an Excel spreadsheet was used to keep track of what was dispensed and when (hooray for my uber-organized daughter).
Tuesday, September 13, 2011
Chapter 6
Out of Surgery
Around 6:30 PM, without the pager going off, Keith looks up to see Dr. Olson heading towards them. He was beaming and told Keith & Melissa “I got it all”. The membrane of the cyst was firmer than he had anticipated, enabling him to resect the entire mass. (Frequently the membrane is more like wet toilet paper and doesn't remain in one piece.) Dr. Olson also advises them that the pathologist’s gut reaction to the tumor was that it was melanoma.
Keith & Melissa are in complete shock. Neither of them had thought about melanoma for several years as it had been 17 years since my initial diagnosis. Patients with a stage one skin cancer like my original melanoma (the spot on my hip was less than 1/4" in diameter) which is caught early have a 99% survival rate. After ten years, the chance of a re-occurrence are considered to be less than 1%. Obviously we would need to wait for the final biopsy results before any decisions are made regarding treatment but the fact that the malignancy is due to melanoma is significant.
When we meet Dr. Flaherty (the oncologist we chose to treat me) approximately two weeks later, he would liken this turn of events to a "terrorist attack" - unexpected and frightening but at least now we are aware of it's presence. Now we have our eyes wide open and can monitor me for trouble going forward.
Around 8:45 PM, after approximately two hours in recovery, I am brought back to my room sound asleep with a large bandage around my head. According to Keith & Melissa, I opened my eyes once or twice for a few seconds but drift immediately back to sleep with out speaking. The nurses reassure Keith & Melissa that it is highly unlikely that I will wake up and finally convince them to go home to get some rest. It will be needed for the next day.
Saturday was a long day for all of us.
I discovered after the fact Keith and Melissa had different concerns that never entered my mind. I honestly never considered that I would come out of the surgery with any complications. I expected it to be painful but without any permanent effect on me. I was surprised to hear they felt differently.
I was asleep/unconscious when they left on Friday night Here are some of their questions related to my waking up: How would I be when I woke up? What if my speech was slurred? What if I couldn’t talk? What if I couldn’t move? What if I was “different”? I regret they were so worried but I have to say I am glad they never expressed what was on their minds to me.
When I come to full consciousness on Saturday, I recognize that my "headache" is finally gone from the left side of my head. However, it has been replaced with extensive pain on the right side. Frankly, it felt like someone smashed a sledge hammer in my head.
When I start speaking, I keep asking over and over, “Is it Sunday yet?” Remember, I am 100% focused on the fact that the pain will improve on Sunday, so I incessantly make the same inquiry. I am sure it was puzzling to Keith and Melissa. What is the meaning of Sunday? Do I think I am going to church? What is the deal?
I also ask if it is raining. Keith and Melissa wonder if I have bionic hearing (as it was raining outside that day), BUT we later learn that it was my brain producing spinal fluid to fill in the gap left by the removal of the cyst and tumor.
I desperately need a distraction and I decided to pray (useful tool that helps me relax when I can't sleep). This time it is not relaxing because I am having difficulty keeping track of where I am. I ask for a rosary thinking maybe they can find one somewhere. Amazingly, Keith's cousin Debbie who I have been friends with for years (she grew up down the street from me) has left a special rosary from Poland for me on impulse. As doubtful as Melissa was that it would be utilized when Debbie gave it to her, she is pleased to tell me that "Yes, actually, Aunt Debbie left this one for you."
Keith and Melissa launch into a string of Hail Mary’s. As they count the decades (sometimes arguing which number they were on), I realize they are “doing it wrong” because they skipped the Apostles Creed and Our Father (they left the ‘tail’ with the cross to the end instead of doing that at the beginning). While it was hard for them to decipher my speech, eventually, my daughter is smart enough to Google the rosary. I finally fall asleep with Keith & Melissa each holding one of my hands before we finish the rosary.
Monday, September 12, 2011
Chapter 5
Getting ready for surgery
In preparation for my surgery, I asked to speak to someone about the many questions running through my mind. I do not recall who I spoke with or when I had the discussion, but I found out in the interim that Keith and Melissa were not present (remember this when you read the next chapter).
I was most concerned about two issues;
(Q) Was I going to be conscious after surgery? (A) Yes. I needed to be awake in order for them to monitor me neurologically.
(Q) What could I expect post-surgery? (A) They were clear - pain. So I asked for a guideline on how bad and for how long. Basically, I wanted to be given a "finish line" I needed to cross. I was told that the first 24 to 30 hours would be the worst and things would get a lot better after that. So in my mind, I just needed to make it to Sunday. That was my goal.
By Friday morning, the pressure in my head is so intense; I float in and out of reality. My recall is scant and poor from here until approximately Saturday afternoon. I am so out of it; I do not even comprehend what is happening. Frankly, in retrospect, this was a good thing because I believe the events of the day would have freaked me out.
Here is how the day played out on Friday;
6 AM: The physician's assistant (PA) for neurosurgery comes to shave my hair and place markers for where they will position the frame to hold my head still during the craniotomy. Keith and Melissa chose to stay while the PA shaves my hair so they could hold my hand and provide support just in case I need it as she worked . The PA did a terrific job preparing them by explaining ahead of time exactly what she would be doing. I am sure it helped to minimize their anxiety.
The PA explained that she needed to shave small areas of my head to accommodate each marker (imagine a disk the size of a Fruit Loop). Due to the length of my hair, it would appear that she was shaving more than she actually was. In fact, most of the shaved spots would be hidden by all of my remaining hair. The only exception would be the area in the front where the incision would be made to remove part of my skull to access the tumor.
9-10AM: Transport comes to take me down for another MRI. This one is to check the alignment of the markers in relation to the cyst and tumor and to verify everything is in order for the craniotomy.
12:15-3:30PM: I am taken down to pre-op, one hour before my scheduled surgery time. I feel extremely nauseous. I ask for a basin because I am positive I am going to vomit. I am reminded that I have had nothing to eat or drink since dinner on Thursday evening (not even an ice chip), so it is unlikely I will do anything other than have the dry heaves. When I insist (come on, humor me here), I am given a basin (thankfully) because up comes any remaining body fluids. This actually makes me feel better but it stresses Keith and Melissa out since it they know it demonstrates how much pressure my brain is under.
My IV was really bothering me. It had been placed on the inside of my right arm right in the bend at the elbow. I had rolled onto my right side on Thursday night and had been sleeping on my arm with my elbow bent causing the IV to be jammed in. The area is badly bruised and the IV is no longer laying well despite a mountain of tape (that is further irritating my skin).
The pre-op nurse offers to “fix” it. When she is unable to improve the situation, she decides to remove the IV and start a new one in a better location. Unfortunately, I am now so dehydrated that every IV they try to insert to administer my anesthesia fails because my veins are collapsing. After two different nurses in pre-op make three failed attempts each into my lower right and left arms, a nurse from the ICU is called to try for a seventh time. He determines that none of the veins in my arms will work any longer and decides to use the top of my hand. Finally - success.
Because I have had several bad experiences with anesthesia (it has made me violently ill in the past), I am anxious that the doctor be made aware of my history. The thought of having to vomit several times post craniotomy fills me with dread. Dr. Collier (the anesthesiologist) comes in to talk to all three of us. Our discussion provides some much needed reassurance that the drug being administered will be completely different from the ones used previously by my oral surgeon to have my wisdom teeth removed and the other local which was given to remove my original melanoma back in 1994. Thankfully, the anesthesiologist has a full arsenal of choices for me. Plus, this time a full sedation drug will be utilized.
I can't wait for them to put me under. We have now been in pre-op for several hours, far beyond my scheduled surgery time. The neurosurgeon's first two surgeries have taken much longer than expected. Understandably, the delay causes Keith and Melissa to fret. At 3:30, I am finally taken into the OR.
Keith and Melissa are encouraged to go do something rather than sit in the surgical waiting room on the second floor: get something to eat, go outside, etc. Since my surgery is expected to last for a few hours, they decide to grab some food from the first floor cafeteria. The concierge outside the surgery waiting room on the second floor gives them a pager that will beep when I am out of surgery. It reminds them of the kind of beeper you are given at a restaurant to alert you when your table is ready. They return to the waiting room after eating and attempt to distract themselves by working on a list of people they feel should be contacted about this whole crazy situation.
Friday, September 9, 2011
Unexpected News - Cautiously Optimistic
Over the last two weeks, a few test results are making us feel cautiously optimistic.
So....what does that mean moving forward?
Best Birthday Present Ever!!!!! (For those of you that don't know, Saturday is my "official" 53rd birthday).
FYI - I did have a glass of 2002 Beringer Private Reserve and Sanders' Bumpy Cake to celebrate this evening.
- Lung biopsy #1 - pathology of the largest nodule in the left lung: not melanoma as suspected
- B-Raf test is positive - the new drug approved by the FDA on 8/17 to treat melanoma can only be administered to people that test positive for this genetic mutation; I am a candidate if/when we need it for treatment (Learn more: http://bit.ly/cZyZzD)
- Lung biopsy #2 - pathology of the mass in the right lower lobe: not melanoma as assumed
So....what does that mean moving forward?
- Continued rest and recuperation
- Brain/body scans every 90 days (next one scheduled for late October)
Best Birthday Present Ever!!!!! (For those of you that don't know, Saturday is my "official" 53rd birthday).
FYI - I did have a glass of 2002 Beringer Private Reserve and Sanders' Bumpy Cake to celebrate this evening.
Thursday, September 8, 2011
Chapter 4
My recollection of events beginning Wednesday night when I woke up in the ICU through Friday night when I returned to consciousness after my craniotomy has come into 'dispute" between my family and myself. When I refer to certain events I am sure transpired, Keith and Melissa look at me like I am smoking crack.
Apparently, some of the conversations occurred in my head only. For example, when I asked for my friend Father Dann, I thought I conveyed that the request was not because I thought I was dying. I was just really anxious and he is such a comforting presence. Father Dann came to the hospital to administer the Anointing of the Sick and was under the impression that I was in need of confession because I was worried about unloading some big, dark major sin. (FYI: not the case).
Alternately, when Keith or Melissa recounts a particular interaction, I have no recall of having said some of the things they indicate I had expressed. Supposedly, I warned Father Dann to be careful where the holy water landed because if any landed on Melissa she would surely start smoking and burning until she melted away like the Wicked Witch in the Wizard of Oz movie.
On another occasion, Melissa claims I sat up in bed, patted her on the arm and told her not to count me out yet while assuring her I wasn't going anywhere. Therefore, she didn't have to worry because she would not be faced with the task of finding an appropriate replacement of me for her father. There are other examples but you get the idea. I am beginning to suspect that they are piling on the stories since I have no way to refute any of the proclamations they insist I made. I guess we'll never know for sure.
What I have been able to reconstruct is the following:
Based on my history of malignant melanoma, the mass in the cyst in my right front temporal lobe is assumed to be a metastasized melanoma. Since it is more likely that the brain tumor is a secondary cancer site, it is necessary for me to have a full body scan to determine the location of the primary cancer site. The body scan shows twelve small nodules (~ 1cm each) in my left upper lung and a 4 to 5 cm mass in my lower right lung.
This makes my situation much more complicated.
Keith and Melissa start meeting with folks from oncology and radiology. There are discussions of the pros and cons of whole head radiation verses Gamma Knife radiation. Despite my appearing as if I am fully engaged in some of the conversations, I have no memory of the interactions. I could not pick these folks out of a line up for any amount of money. Amongst some of the commentary I am credited with is: "If I end up being a dumb #@!, at least I won't know I'm a dumb #@! This is because I am worried about the radiation causing brain damage.
While it is a "no brainer" that the first issue to be tackled is removing the mass, when I am informed on Thursday that there is a neurosurgeon available to do the resection on Friday, I question if we should be selecting someone to operate on my brain just because he is available. Keith explains to me that I am lucky because he is "THE" guy for what I need done and the doctor was purposely selected based on the input of several folks who possess the knowledge to make this choice. I am assured that if the best candidate was elsewhere, Keith would not hesitate to have me transferred by ambulance to where ever the best qualified person worked.
I also express concern about where I am in the line up. For some reason I am under the impression that I am going to be the fifth procedure of the day and I am not thrilled at the prospect of being last. Wouldn't anyone prefer to be first when the doctor is fresh in the morning? It turns out I am incorrect (I am third and scheduled at noon). Besides, haven't I been telling hospital personnel that I completely trust the judgment of both my husband and my daughter? Okay but isn't a woman allowed to say one thing and either change her mind or mean another? Especially when she has a humongous mass in her head that is smashing her brain?
Apparently, some of the conversations occurred in my head only. For example, when I asked for my friend Father Dann, I thought I conveyed that the request was not because I thought I was dying. I was just really anxious and he is such a comforting presence. Father Dann came to the hospital to administer the Anointing of the Sick and was under the impression that I was in need of confession because I was worried about unloading some big, dark major sin. (FYI: not the case).
Alternately, when Keith or Melissa recounts a particular interaction, I have no recall of having said some of the things they indicate I had expressed. Supposedly, I warned Father Dann to be careful where the holy water landed because if any landed on Melissa she would surely start smoking and burning until she melted away like the Wicked Witch in the Wizard of Oz movie.
On another occasion, Melissa claims I sat up in bed, patted her on the arm and told her not to count me out yet while assuring her I wasn't going anywhere. Therefore, she didn't have to worry because she would not be faced with the task of finding an appropriate replacement of me for her father. There are other examples but you get the idea. I am beginning to suspect that they are piling on the stories since I have no way to refute any of the proclamations they insist I made. I guess we'll never know for sure.
What I have been able to reconstruct is the following:
Based on my history of malignant melanoma, the mass in the cyst in my right front temporal lobe is assumed to be a metastasized melanoma. Since it is more likely that the brain tumor is a secondary cancer site, it is necessary for me to have a full body scan to determine the location of the primary cancer site. The body scan shows twelve small nodules (~ 1cm each) in my left upper lung and a 4 to 5 cm mass in my lower right lung.
This makes my situation much more complicated.
Keith and Melissa start meeting with folks from oncology and radiology. There are discussions of the pros and cons of whole head radiation verses Gamma Knife radiation. Despite my appearing as if I am fully engaged in some of the conversations, I have no memory of the interactions. I could not pick these folks out of a line up for any amount of money. Amongst some of the commentary I am credited with is: "If I end up being a dumb #@!, at least I won't know I'm a dumb #@! This is because I am worried about the radiation causing brain damage.
While it is a "no brainer" that the first issue to be tackled is removing the mass, when I am informed on Thursday that there is a neurosurgeon available to do the resection on Friday, I question if we should be selecting someone to operate on my brain just because he is available. Keith explains to me that I am lucky because he is "THE" guy for what I need done and the doctor was purposely selected based on the input of several folks who possess the knowledge to make this choice. I am assured that if the best candidate was elsewhere, Keith would not hesitate to have me transferred by ambulance to where ever the best qualified person worked.
I also express concern about where I am in the line up. For some reason I am under the impression that I am going to be the fifth procedure of the day and I am not thrilled at the prospect of being last. Wouldn't anyone prefer to be first when the doctor is fresh in the morning? It turns out I am incorrect (I am third and scheduled at noon). Besides, haven't I been telling hospital personnel that I completely trust the judgment of both my husband and my daughter? Okay but isn't a woman allowed to say one thing and either change her mind or mean another? Especially when she has a humongous mass in her head that is smashing her brain?
Monday, September 5, 2011
Perspective Gained the Hard Way
Anyone who knows me well is very familiar with my motto of "As long as nobody died, everything is fixable." It doesn't mean that a particular event is not frustrating or a situation isn't difficult. But you can always make a conscious choice on a daily basis about how you will handle what ever you are facing. While you can not always change the outcome, you can decide which mountain you want to climb and which one you want to die on. Ultimately, your attitude is everything..
Those who have known me for a very long time understand that this view is the result of our daughter Kelly's six and a half year battle with a rare disease of the nervous system called Seitelberger's Infantile Neuroaxonal Dystrophy. (http://www.ninds.nih.gov/disorders/neuroaxonal_dystrophy/neuroaxonal_dystrophy.htm) She became symptomatic around her first birthday. Because the the disease was rare, it took several months to diagnose. Just before her 2nd birthday, a skin, nerve and muscle biopsy confirmed the neurologist's suspicion. At the time, Kelly was given three to eight years to live. She lost her struggle at the age of seven and a half.
Ultimately, one of the hardest aspects for Keith and I was the fact that Melissa was only five years old when Kelly became ill and eleven years old when Kelly passed. Melissa was going to have to grow up fast. However, despite how the process impacted our lives, the experience provided Keith, Melissa and I with excellent perspective - admittedly gained the hard way, but still valuable in life.
If it doesn't involve people or health, it generally only involves material things or things that don't truly matter. I can't tell you how many times I could let something go by considering whether it was worth making an issue of it. As difficult as the situation was, I can assure you the journey allowed us to meet and interact with some fabulous human beings. I can cite numerous examples of how individuals demonstrated on a regular basis an amazing level of caring and support.
So here we go again. Fortunately, this time around we forge ahead with confidence because we know we have what it takes to win the battle: determination. The better news is that this prognosis includes survival (verses the last challenge that involved something absolutely terminal). In addition, our support network is considerably larger - you can even describe it as massive. Hopefully, everyone recognizes how all the encouragement not only empowers us, but makes us feel pretty formidable.
This time we will do more than get through it. In fact, for this current opportunity to further develop our perspective, here is the new motto from Vivian Greene:
Those who have known me for a very long time understand that this view is the result of our daughter Kelly's six and a half year battle with a rare disease of the nervous system called Seitelberger's Infantile Neuroaxonal Dystrophy. (http://www.ninds.nih.gov/disorders/neuroaxonal_dystrophy/neuroaxonal_dystrophy.htm) She became symptomatic around her first birthday. Because the the disease was rare, it took several months to diagnose. Just before her 2nd birthday, a skin, nerve and muscle biopsy confirmed the neurologist's suspicion. At the time, Kelly was given three to eight years to live. She lost her struggle at the age of seven and a half.
Ultimately, one of the hardest aspects for Keith and I was the fact that Melissa was only five years old when Kelly became ill and eleven years old when Kelly passed. Melissa was going to have to grow up fast. However, despite how the process impacted our lives, the experience provided Keith, Melissa and I with excellent perspective - admittedly gained the hard way, but still valuable in life.
If it doesn't involve people or health, it generally only involves material things or things that don't truly matter. I can't tell you how many times I could let something go by considering whether it was worth making an issue of it. As difficult as the situation was, I can assure you the journey allowed us to meet and interact with some fabulous human beings. I can cite numerous examples of how individuals demonstrated on a regular basis an amazing level of caring and support.
So here we go again. Fortunately, this time around we forge ahead with confidence because we know we have what it takes to win the battle: determination. The better news is that this prognosis includes survival (verses the last challenge that involved something absolutely terminal). In addition, our support network is considerably larger - you can even describe it as massive. Hopefully, everyone recognizes how all the encouragement not only empowers us, but makes us feel pretty formidable.
This time we will do more than get through it. In fact, for this current opportunity to further develop our perspective, here is the new motto from Vivian Greene:
Saturday, September 3, 2011
Chapter 3
Confusion Settles In
Sometime during the 4 hours that have passed between my arriving at the ER around 1 PM and my heading for my CAT scan around 5 PM, I begin to have difficulty comprehending what is happening even though I appear to be quite lucid. I recall repeatedly being asked to: touch my nose, squeeze someone's fingers, push them away, pull them towards me, lift my legs and resist their attempt to lower or raise my legs, wink, stick out my tongue, answer math questions, etc. I engage in a conversation with a neurologist who comments that the only sign I'm exhibiting that is concerning and may be indicative of a neurological issue, is that I seem to have lost my ability to filter. I am swearing frequently and my conversation is laced with profanity. My brother-in-law explains to her that this is not an abnormal finding, but quite typical for me. ;-)
It is the undelivered text messages to Keith which I discover in my cell phone a few weeks after surgery that help to reconstruct the events as they occurred. The first two texts go through while I am still in the waiting room of the ER. It is the last 4 texts that I've tried to send from the holding area that leave the message window but fail to be delivered to Keith's cell phone.
1:01 PM ""Bob has instructed me to go to er. Jackie is driving me. can u pick me up later?"
1:20 PM "yes"
4:02 PM "getting IV meds. going 4 cat scan."
4:56 PM "Jackie had to leave. unsure when I will b finished. will let u know when i am done & need ride"
6:01 PM "can't talk on phone. text only. no service for voice. neuro folks seem concerned"
6:18 PM "cat scan shows 'mass' in brain. need mri. being told neuro folks will most likely require overnight stay"
I remember a male nurse coming into my room at some point, giving me a hospital gown, and instructing me to get undressed. I do not remember changing my clothes. The nurse returns and informs me I need to undress completely because I am going to be sent for an MRI. Therefore, any clothing with metal in it has to be removed. I explain I had left some of my clothes on to stay warm (the hospital is freezing cold). I request several blankets and ask when I might expect to get some of the pain medication they have been promising me. The nurse indicates he expected the IV to be inserted long before and leaves to look into the hold up. I have no idea what time this actually occurred. I wake up (having no idea how long I have been sleeping), and I am aware I have an IV. I have no recollection of having it inserted. I just remember thinking what ever they are giving me is finally relieving the pain in my head.
Unbeknown to me, the ER physician has called neuro in for a consult due to the mass that has been discovered on the CAT scan. A plan is being formulated on how best to proceed - can I be given something for the pain? what about anti-seizure & anti-swelling medication? is the MRI needed before a decision is made?
A physician's assistant (PA) from neurology comes in to my room and inquires if I have any family. I explain I have a HUGE family (in addition to my husband and a daughter who lives out of town, I have 8 brothers & sisters, etc). She asks me if anyone can come to the hospital. I tell her my husband is at work and is planning on coming. Up until this point, he is merely waiting for me to let him know what we find out. I add that the dealership closes at 6 PM but he can come at any time. The PA hands me a phone and instructs me to have him come right away.
I call Keith and tell him to come get me. He thinks I am being released. Confusion settles in and I lose all sense of time. I remember the PA returning and explaining that she hates to give me bad news while I am alone but I need to know the scan revealed there is a large mass present in my brain that requires immediate attention. They are going to admit me to the hospital and they are trying to get me in for an MRI ASAP.
Keith arrives and they bring him to where they are holding me. He is given my belongings by the male nurse who informs him I should be heading for the MRI soon. The doctor never comes to talk to Keith. No one explains anything.
An hour later, the nurse returns and is surprised I have not gone for the test yet. That is the last thing I remember until I wake up in the intensive care unit. I have no memory of having the MRI done. I only remember hearing people discuss that I have be placed in intensive care and thinking to myself "That doesn't sound very good." Two weeks later when I am attempting to reconstruct what has occurred, Keith explains he was thinking more along the the lines of "WTF??!!"
Sometime during the 4 hours that have passed between my arriving at the ER around 1 PM and my heading for my CAT scan around 5 PM, I begin to have difficulty comprehending what is happening even though I appear to be quite lucid. I recall repeatedly being asked to: touch my nose, squeeze someone's fingers, push them away, pull them towards me, lift my legs and resist their attempt to lower or raise my legs, wink, stick out my tongue, answer math questions, etc. I engage in a conversation with a neurologist who comments that the only sign I'm exhibiting that is concerning and may be indicative of a neurological issue, is that I seem to have lost my ability to filter. I am swearing frequently and my conversation is laced with profanity. My brother-in-law explains to her that this is not an abnormal finding, but quite typical for me. ;-)
It is the undelivered text messages to Keith which I discover in my cell phone a few weeks after surgery that help to reconstruct the events as they occurred. The first two texts go through while I am still in the waiting room of the ER. It is the last 4 texts that I've tried to send from the holding area that leave the message window but fail to be delivered to Keith's cell phone.
1:01 PM ""Bob has instructed me to go to er. Jackie is driving me. can u pick me up later?"
1:20 PM "yes"
4:02 PM "getting IV meds. going 4 cat scan."
4:56 PM "Jackie had to leave. unsure when I will b finished. will let u know when i am done & need ride"
6:01 PM "can't talk on phone. text only. no service for voice. neuro folks seem concerned"
6:18 PM "cat scan shows 'mass' in brain. need mri. being told neuro folks will most likely require overnight stay"
I remember a male nurse coming into my room at some point, giving me a hospital gown, and instructing me to get undressed. I do not remember changing my clothes. The nurse returns and informs me I need to undress completely because I am going to be sent for an MRI. Therefore, any clothing with metal in it has to be removed. I explain I had left some of my clothes on to stay warm (the hospital is freezing cold). I request several blankets and ask when I might expect to get some of the pain medication they have been promising me. The nurse indicates he expected the IV to be inserted long before and leaves to look into the hold up. I have no idea what time this actually occurred. I wake up (having no idea how long I have been sleeping), and I am aware I have an IV. I have no recollection of having it inserted. I just remember thinking what ever they are giving me is finally relieving the pain in my head.
Unbeknown to me, the ER physician has called neuro in for a consult due to the mass that has been discovered on the CAT scan. A plan is being formulated on how best to proceed - can I be given something for the pain? what about anti-seizure & anti-swelling medication? is the MRI needed before a decision is made?
A physician's assistant (PA) from neurology comes in to my room and inquires if I have any family. I explain I have a HUGE family (in addition to my husband and a daughter who lives out of town, I have 8 brothers & sisters, etc). She asks me if anyone can come to the hospital. I tell her my husband is at work and is planning on coming. Up until this point, he is merely waiting for me to let him know what we find out. I add that the dealership closes at 6 PM but he can come at any time. The PA hands me a phone and instructs me to have him come right away.
I call Keith and tell him to come get me. He thinks I am being released. Confusion settles in and I lose all sense of time. I remember the PA returning and explaining that she hates to give me bad news while I am alone but I need to know the scan revealed there is a large mass present in my brain that requires immediate attention. They are going to admit me to the hospital and they are trying to get me in for an MRI ASAP.
Keith arrives and they bring him to where they are holding me. He is given my belongings by the male nurse who informs him I should be heading for the MRI soon. The doctor never comes to talk to Keith. No one explains anything.
An hour later, the nurse returns and is surprised I have not gone for the test yet. That is the last thing I remember until I wake up in the intensive care unit. I have no memory of having the MRI done. I only remember hearing people discuss that I have be placed in intensive care and thinking to myself "That doesn't sound very good." Two weeks later when I am attempting to reconstruct what has occurred, Keith explains he was thinking more along the the lines of "WTF??!!"
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