After 8 days in the hospital, I’m released on Saturday night. I feel like a prisoner who has been unshackled and rub my right arm, free of tubes, with relish.
I can use the bathroom without carting a few pounds of metal with me.
I don’t have to have a nurse take my blood pressure or my temperature every 4 hours, even if I’m in the deepest of sleep.
I don’t have to hear the incessant beeping of the IV machine when a medication is finished.
I’m giddy about the idea of going home and look forward to one main thing: a shower.
Despite the wonderful care I received at the hospital, I cannot wait to wash my hair, wash the adhesive glue from my body, and feel like a normal person.
The cold front has just moved in, as I’m being carted, literally, to my car in the front of the hospital. My sister is driving and as we move along I-35 in silence, I cannot believe that over a week has passed. Is it really almost April? It’s like nothing has changed for everyone else, but I’ve sped along in leaps and bounds.
I take in the lights, ones that I’ve seen millions of times before, as I’ve commuted from Lewisville to Denton for years as an undergraduate, and they all seem different somehow. As if I’m looking at them for the first time.
Once home, I’m settled into a bath as I tug vigorously at my skin to remove those pesky adhesive remnants.
It should be noted that even days later I’ve failed my quest because I’m still finding them.
Dried off and in pajamas, I take in the fact that I’m in my bed and breathe a sigh of relief. It’s nice to hear the normal sounds of a household, without the contribution of medical equipment or random voices from nurses, technicians, and doctors. A couple of days off and the tests will begin again.
I’m already scheduled a PET scan and antibody injections. I try to see people I haven’t seen in a long time or at least since before I was in the hospital. I perhaps spook one of my workplaces by showing up out of the blue to return a book. One of them asks: “Should you even be here? Shouldn’t you be in bed?”
I tell them that I have plans for grocery shopping and I’m flexing my freedom by driving my car again and going places.
I tell stories and get hugs.
I realize that defeat is not possible.
I want back to as much normalcy as I can muster.
I’m in a bit of a fog post-hospital, just trying to get a routine of sorts. If there is any conclusion I can make of all this, the routine is relatively simple (though not necessarily in any order):
Drink fluids
Wash hands thoroughly all the time
Eat foods that you crave or when you have an appetite at all
Stay connected with friends and family
Don’t push it if you’re not feeling well
Take medication
Do what the doctor says
Rest
All the other stuff seems extraneous and it’s weird to put such trivial things at the front of the line. If I were tired in the past, I’d just drink a caffeinated beverage and relish the buzz. Now, not so much. I drink water or juice and just sit still.
Sitting still is torture for me. I’m a lot happier with my hands or brain busy.
Thus far, it has been a lesson in patience. Patience, which I’ve found out, is my greatest ally.
Thursday, March 31, 2011
Tuesday, March 29, 2011
It's in the bag.
I forgot to mention one funny incident the night before I was to have my port surgically implanted.
Since chemo can weaken the heart, the doctors wanted to take the precaution of checking out the current status of my ticker via a heart echocardiogram. Thankfully, it’s not an invasive procedure, but basically an opportunity for me to flash the technician as they perform an ultrasound on my heart.
I had just moved upstairs to the fourth floor and I’m getting settled in, sitting in the dark, watching DVDs on my computer, when I hear a knock on my door. It’s just before 10 pm and I’m surprised at what I see: a woman is entering the room with a large ultrasound machine and she says: “I just came from the IMCU and they said you moved up here.” She rearranges the things around my bed so she can fit the contraption and mentions: “I received the doctor’s order early this afternoon, but I’ve been in the ER all afternoon and evening, so this my chance to finally get you in.”
I arrange myself on the bed so that she can do the ultrasound of my heart. She busies herself by applying the lovely goo that all ultrasound technicians favor to my sternum and begins to use the probe to take pictures. She moves around a bit and pauses. I think I know what’s coming next, but I’m a bit sheepish to say.
I begin: “did they mention that I have a large lung mass in front of my heart?”
“Oh thank goodness, I was wondering why I couldn’t find your heart,” she says immediately after. “Well, you are kinda bony, so we will just have to find other ways to take pictures.”
“Bony?”
“I usually do this test on the elderly that have a bit more flesh and flab and can work it around to get the pictures I need, in this case...we’ll have to do some angle shots.”
As she works to get images and sound bytes of my heart, we chat.
“Huh, on this shot, you can see the shadow of your mass on the side of your heart,” and she gestures to the monitor. To me, it looks like it could be a moon landing, but she’s the expert, so she understands what is there.
Once I’m cleaned up and she has left, I settle back into bed, grateful at the lack of needles necessary, and think forward to the next day’s procedure.
A day later, one bone marrow biopsy down and a port in my chest, it’s the morning and I’m waiting to find out how quickly I’ll begin chemo. I eat breakfast, a nurse comes in to check my vitals, and watch the minute and hour hands move by on the clock. I had blood work from the day before to ensure that I never had hepatitis and we were waiting for the results. Apparently, chemo can cause dormant hepatitis to flare up.
The nurse doesn’t mention the second bone marrow biopsy necessary and I begin to think that maybe it was forgotten. I have a small moment of guilt because I wonder if I’m supposed to remind them or if should I stay quiet. I feel like a school child when a teacher forgets to ask for an assignment he or she requested from the day before and no one says anything.
The nurse preps the hospital room with chemo materials while I sit and wait with my family. She brings in a large yellow bucket with saline filled lines and other tools. I see her bring in dishwashing gloves and a plastic poncho and I begin to wonder if this will be crafts time, instead. The tools look like ones I have used in fabric dyeing.
My oncologist appears around 11 am, bringing a technician with a tray full of goodies with him. Oh boy, I think, some more pillowcase chewing time. Thankfully, it only took one pass to get the juicy tissue in my marrow. Relieved that it’s over, I eat lunch and wait for chemotherapy to begin.
The nurse appears shortly after 2 pm and begins putting on the HAZMAT poncho and dishwashing gloves. She begins readying the first bag of my “cocktail” of treatments and explains: “I have to wear these because if this spills on me, it could be dangerous.”
And you’re putting this inside of me? I think in alarm.
She connects the bag to my port and says that she has to wait for 15 minutes with me in the room in case I go into convulsions because this is the “rough” one. I look around timidly at the nurse and my family, nervous that something might just happen.
But nothing does.
The nurse leaves the room and the bag is slowly drained into me over a span of several hours. By the time it’s finished, I get dinner and the night shift of nurses has come on. It takes a few hours to get back into the swing of things.
Vitals taken. Breathing treatment.
The same nurse from the night before comes in with the second bag of the cocktail mix. My family has left for the night and I’m sitting in the dark with my laptop once more. Once it’s hooked up, I begin to feel my face and head itch. My nose hairs feel like they are burning. The taste in my mouth is awful and I reach for the gummy candies my dad had brought me and chew on them for dear life. An hour goes by way too slowly, but the nurse comes back in and I’m grateful that this one is over.
I realize that I’m mentally making notes for my reactions with each bag.
The third one is tiny and precious and looks like it is Easter egg dye: bright blue. I already begin to imagine the future color of my urine. My nurse notifies me that this one only takes 30 minutes and another 30-minute bag is to immediately follow.
The next two seem to go quickly and I look at the clock and notice it’s nearing midnight. I remain glued to my laptop and I’m instantly relieved when I’m connected to just saline and antibiotics.
I made it through the first chemotherapy. That was it.
I’m told that I will stay in the hospital during the next day so they can check the toxicity of my blood. Apparently, the chemo goes in and kills both bad and good cells and lowers my overall blood count.
I finally fall asleep to the thought that I can do this, with only 7 more sessions to go over the next 6 months. I wake up an hour or so later feeling feverish followed by a cold sweat. I stay perfectly still because I’m too tired to move. I pull more blankets around me and finally fall back asleep, anticipating my freedom of the hospital...
Since chemo can weaken the heart, the doctors wanted to take the precaution of checking out the current status of my ticker via a heart echocardiogram. Thankfully, it’s not an invasive procedure, but basically an opportunity for me to flash the technician as they perform an ultrasound on my heart.
I had just moved upstairs to the fourth floor and I’m getting settled in, sitting in the dark, watching DVDs on my computer, when I hear a knock on my door. It’s just before 10 pm and I’m surprised at what I see: a woman is entering the room with a large ultrasound machine and she says: “I just came from the IMCU and they said you moved up here.” She rearranges the things around my bed so she can fit the contraption and mentions: “I received the doctor’s order early this afternoon, but I’ve been in the ER all afternoon and evening, so this my chance to finally get you in.”
I arrange myself on the bed so that she can do the ultrasound of my heart. She busies herself by applying the lovely goo that all ultrasound technicians favor to my sternum and begins to use the probe to take pictures. She moves around a bit and pauses. I think I know what’s coming next, but I’m a bit sheepish to say.
I begin: “did they mention that I have a large lung mass in front of my heart?”
“Oh thank goodness, I was wondering why I couldn’t find your heart,” she says immediately after. “Well, you are kinda bony, so we will just have to find other ways to take pictures.”
“Bony?”
“I usually do this test on the elderly that have a bit more flesh and flab and can work it around to get the pictures I need, in this case...we’ll have to do some angle shots.”
As she works to get images and sound bytes of my heart, we chat.
“Huh, on this shot, you can see the shadow of your mass on the side of your heart,” and she gestures to the monitor. To me, it looks like it could be a moon landing, but she’s the expert, so she understands what is there.
Once I’m cleaned up and she has left, I settle back into bed, grateful at the lack of needles necessary, and think forward to the next day’s procedure.
A day later, one bone marrow biopsy down and a port in my chest, it’s the morning and I’m waiting to find out how quickly I’ll begin chemo. I eat breakfast, a nurse comes in to check my vitals, and watch the minute and hour hands move by on the clock. I had blood work from the day before to ensure that I never had hepatitis and we were waiting for the results. Apparently, chemo can cause dormant hepatitis to flare up.
The nurse doesn’t mention the second bone marrow biopsy necessary and I begin to think that maybe it was forgotten. I have a small moment of guilt because I wonder if I’m supposed to remind them or if should I stay quiet. I feel like a school child when a teacher forgets to ask for an assignment he or she requested from the day before and no one says anything.
The nurse preps the hospital room with chemo materials while I sit and wait with my family. She brings in a large yellow bucket with saline filled lines and other tools. I see her bring in dishwashing gloves and a plastic poncho and I begin to wonder if this will be crafts time, instead. The tools look like ones I have used in fabric dyeing.
My oncologist appears around 11 am, bringing a technician with a tray full of goodies with him. Oh boy, I think, some more pillowcase chewing time. Thankfully, it only took one pass to get the juicy tissue in my marrow. Relieved that it’s over, I eat lunch and wait for chemotherapy to begin.
The nurse appears shortly after 2 pm and begins putting on the HAZMAT poncho and dishwashing gloves. She begins readying the first bag of my “cocktail” of treatments and explains: “I have to wear these because if this spills on me, it could be dangerous.”
And you’re putting this inside of me? I think in alarm.
She connects the bag to my port and says that she has to wait for 15 minutes with me in the room in case I go into convulsions because this is the “rough” one. I look around timidly at the nurse and my family, nervous that something might just happen.
But nothing does.
The nurse leaves the room and the bag is slowly drained into me over a span of several hours. By the time it’s finished, I get dinner and the night shift of nurses has come on. It takes a few hours to get back into the swing of things.
Vitals taken. Breathing treatment.
The same nurse from the night before comes in with the second bag of the cocktail mix. My family has left for the night and I’m sitting in the dark with my laptop once more. Once it’s hooked up, I begin to feel my face and head itch. My nose hairs feel like they are burning. The taste in my mouth is awful and I reach for the gummy candies my dad had brought me and chew on them for dear life. An hour goes by way too slowly, but the nurse comes back in and I’m grateful that this one is over.
I realize that I’m mentally making notes for my reactions with each bag.
The third one is tiny and precious and looks like it is Easter egg dye: bright blue. I already begin to imagine the future color of my urine. My nurse notifies me that this one only takes 30 minutes and another 30-minute bag is to immediately follow.
The next two seem to go quickly and I look at the clock and notice it’s nearing midnight. I remain glued to my laptop and I’m instantly relieved when I’m connected to just saline and antibiotics.
I made it through the first chemotherapy. That was it.
I’m told that I will stay in the hospital during the next day so they can check the toxicity of my blood. Apparently, the chemo goes in and kills both bad and good cells and lowers my overall blood count.
I finally fall asleep to the thought that I can do this, with only 7 more sessions to go over the next 6 months. I wake up an hour or so later feeling feverish followed by a cold sweat. I stay perfectly still because I’m too tired to move. I pull more blankets around me and finally fall back asleep, anticipating my freedom of the hospital...
Monday, March 28, 2011
Paranoid Android Me
Warning: disturbing, but somewhat humorous imagery to follow
I’m sitting in bed, wearing the extra large muumuu considered a hospital gown, when the doctor tells my family and I the news about the results of my biopsies.
I felt so vulnerable and small in that bed and began to squirm as he rattled off the things that needed to be done. I remember feeling a bit faint and lying back in the bed with the words “port” and “bone marrow” began floating into the conversation. I think that was the moment when I began to tear up.
I took a deep breath and just sucked it back in, nodding with each detail he mentioned.
First things first, the doctor wanted samples of my bone marrow to ensure I didn’t have dormant cancer cells in my marrow and he wanted those samples very soon.
About an hour later, I found myself facedown on my hospital bed chewing the end of my pillowcase as he was giving me a local anesthesia into my left hip. I believe there is a moment when something is just so intolerable that your body just gives into the discomfort.
Having studied archaeology as an undergraduate with both human and animal bones for classes, I think this was the moment when my brain was having way too much fun imagining what was going on back there. I could hear the clicking of the needle making its way into my bone. I remember learning that bone is filled with both dense and spongy areas, as well as nerves and blood vessels. Knowing full well that a local anesthesia could only numb so much, I began to tense up.
“Are you feeling any pain?” the doctor asks. Well, technically no, but in anticipation, I began to breath deeply and imagine things in nature, like trees and rivers, to keep my mind from it. The doctor asks: “Are you okay?” I respond: “Mmmhmm” with the pillowcase still stuffed in mouth. Though really I was hyperventilating and saying in my head: please let this be over soon, please let this be over soon. After he actually makes the hole, he tells me next, “this is the part that causes the most discomfort.”
Oh, good to know.
He makes three passes and it’s only the fluid from the marrow, but he needs some tissue, too. By this time, I’m shaking and the pillowcase is a damp and wrinkled mess in my mouth. He finally says: “tomorrow you have to get your port inserted, so how about I’ll try the other hip while you are sedated?”
Oh, thank goodness.
I spend the rest of my afternoon and evening reeling from the news and nursing my sore hip, sitting precariously on chairs like someone with hemorrhoids.
Finally, a man and a woman in scrubs walk in carrying plastic cases. Great, Fric and Frac want blood, I think. I’m still tired from the bone marrow biopsy and just surrender my arms. “Take your pick,” I tell them drily, “I’m still squeamish about blood, but I just had bone marrow taken, so I’m a bit desensitized now.”
I ask them as they are examining my arms for veins: “Why are there two of you? Is one of you an intern or do you need to take extra blood?” They look at each other and laugh, “nah, he’s new to this hospital and we were bored.”
The woman says as they begin getting vials ready: “I walked in during the procedure because they sent me to get some blood and I saw this giant needle coming out of you and thought I couldn’t have done that, I’m such a wimp.”
Funny, a phlebotomist who doesn’t like needles.
I am moved from the IMCU to the fourth floor, used for chemo and recovering surgery patients. A sweet nurse tells me that going to that floor from the IMCU is a good sign because it means I’ll probably leave for home soon. I remind the nurses on the new floor to call the doctor to come in during the surgery, so I won’t have to go through the bone marrow pillowcase chewing again.
Second on the roster, I had to have a port surgically inserted into my body in order to receive chemotherapy and for doctors to take blood. This would happen early the next morning. All in all, it’s a much better ordeal than being poked for each and every procedure and test. However, there is something surreal about having a piece of plastic under your skin.
Early the next morning, a nurse wakes me and said that they would be coming for me in half an hour. I lay there waiting and staring at the clock, slightly saddened that there would be more stuff like this ahead of me.
It felt like by the time I was situated downstairs in the cold chambers of surgery, I was coming to from the anesthesia. My first reaction? I reached and felt the back of my hip and noticed there wasn’t a bandage.
Oh dear.
I then noticed a plastic tail hanging out of the right side of my chest. I traced it back to a pile of gauze and a plastic bandage. I couldn’t help but make a face.
I was wheeled back upstairs to my room, where a nurse began using the catheter from the port to hook me up to the IV. I’m a wee bit horrified, like I could be a character out of a Sci-Fi film and the plastic tail would slither back into my body. I would look like a normal woman, but really could attack some unsuspecting person at will. Or, perhaps I was still coming out of my pain medication.
My oncologist comes in an hour or so later and tells me that there was a miscommunication and he was unable to do the biopsy and will have to do it the next day.
Well, damn.
I’m given the day to recover, but with a sore left hip and a tender right shoulder, I set up the rails in the hospital bed. I look like a person in a bumper bowling alley with pillows surrounding me on both sides, so that I can melt in them and not move.
An oncologist coordinator comes in and talks with my family and I about having a support system through this ordeal and that they could be my advocates in terms of school and work.
It’s an overwhelming feeling that despite these circumstances, there are so many people who care near and far. The amount of support is tremendous and I can already tell this experience won’t be cold and isolating. I had an epiphany that as I work through my own health issues, I want to be an advocate for not only myself, but others as well.
The coordinator notices that I’m writhing a bit in discomfort, but I haven’t asked for my pain medication yet, because I don’t like feeling out of control. I finally ask for the medication, as I’m trying to sleep and a few tears slip out. It’s a small amount and it allows me to fall asleep in a hydrocodone-induced haze.
After some blood work and the second bone marrow biopsy, I’m to begin my first round of chemo.
But I’ll save that for another blog…
I’m sitting in bed, wearing the extra large muumuu considered a hospital gown, when the doctor tells my family and I the news about the results of my biopsies.
I felt so vulnerable and small in that bed and began to squirm as he rattled off the things that needed to be done. I remember feeling a bit faint and lying back in the bed with the words “port” and “bone marrow” began floating into the conversation. I think that was the moment when I began to tear up.
I took a deep breath and just sucked it back in, nodding with each detail he mentioned.
First things first, the doctor wanted samples of my bone marrow to ensure I didn’t have dormant cancer cells in my marrow and he wanted those samples very soon.
About an hour later, I found myself facedown on my hospital bed chewing the end of my pillowcase as he was giving me a local anesthesia into my left hip. I believe there is a moment when something is just so intolerable that your body just gives into the discomfort.
Having studied archaeology as an undergraduate with both human and animal bones for classes, I think this was the moment when my brain was having way too much fun imagining what was going on back there. I could hear the clicking of the needle making its way into my bone. I remember learning that bone is filled with both dense and spongy areas, as well as nerves and blood vessels. Knowing full well that a local anesthesia could only numb so much, I began to tense up.
“Are you feeling any pain?” the doctor asks. Well, technically no, but in anticipation, I began to breath deeply and imagine things in nature, like trees and rivers, to keep my mind from it. The doctor asks: “Are you okay?” I respond: “Mmmhmm” with the pillowcase still stuffed in mouth. Though really I was hyperventilating and saying in my head: please let this be over soon, please let this be over soon. After he actually makes the hole, he tells me next, “this is the part that causes the most discomfort.”
Oh, good to know.
He makes three passes and it’s only the fluid from the marrow, but he needs some tissue, too. By this time, I’m shaking and the pillowcase is a damp and wrinkled mess in my mouth. He finally says: “tomorrow you have to get your port inserted, so how about I’ll try the other hip while you are sedated?”
Oh, thank goodness.
I spend the rest of my afternoon and evening reeling from the news and nursing my sore hip, sitting precariously on chairs like someone with hemorrhoids.
Finally, a man and a woman in scrubs walk in carrying plastic cases. Great, Fric and Frac want blood, I think. I’m still tired from the bone marrow biopsy and just surrender my arms. “Take your pick,” I tell them drily, “I’m still squeamish about blood, but I just had bone marrow taken, so I’m a bit desensitized now.”
I ask them as they are examining my arms for veins: “Why are there two of you? Is one of you an intern or do you need to take extra blood?” They look at each other and laugh, “nah, he’s new to this hospital and we were bored.”
The woman says as they begin getting vials ready: “I walked in during the procedure because they sent me to get some blood and I saw this giant needle coming out of you and thought I couldn’t have done that, I’m such a wimp.”
Funny, a phlebotomist who doesn’t like needles.
I am moved from the IMCU to the fourth floor, used for chemo and recovering surgery patients. A sweet nurse tells me that going to that floor from the IMCU is a good sign because it means I’ll probably leave for home soon. I remind the nurses on the new floor to call the doctor to come in during the surgery, so I won’t have to go through the bone marrow pillowcase chewing again.
Second on the roster, I had to have a port surgically inserted into my body in order to receive chemotherapy and for doctors to take blood. This would happen early the next morning. All in all, it’s a much better ordeal than being poked for each and every procedure and test. However, there is something surreal about having a piece of plastic under your skin.
Early the next morning, a nurse wakes me and said that they would be coming for me in half an hour. I lay there waiting and staring at the clock, slightly saddened that there would be more stuff like this ahead of me.
It felt like by the time I was situated downstairs in the cold chambers of surgery, I was coming to from the anesthesia. My first reaction? I reached and felt the back of my hip and noticed there wasn’t a bandage.
Oh dear.
I then noticed a plastic tail hanging out of the right side of my chest. I traced it back to a pile of gauze and a plastic bandage. I couldn’t help but make a face.
I was wheeled back upstairs to my room, where a nurse began using the catheter from the port to hook me up to the IV. I’m a wee bit horrified, like I could be a character out of a Sci-Fi film and the plastic tail would slither back into my body. I would look like a normal woman, but really could attack some unsuspecting person at will. Or, perhaps I was still coming out of my pain medication.
My oncologist comes in an hour or so later and tells me that there was a miscommunication and he was unable to do the biopsy and will have to do it the next day.
Well, damn.
I’m given the day to recover, but with a sore left hip and a tender right shoulder, I set up the rails in the hospital bed. I look like a person in a bumper bowling alley with pillows surrounding me on both sides, so that I can melt in them and not move.
An oncologist coordinator comes in and talks with my family and I about having a support system through this ordeal and that they could be my advocates in terms of school and work.
It’s an overwhelming feeling that despite these circumstances, there are so many people who care near and far. The amount of support is tremendous and I can already tell this experience won’t be cold and isolating. I had an epiphany that as I work through my own health issues, I want to be an advocate for not only myself, but others as well.
The coordinator notices that I’m writhing a bit in discomfort, but I haven’t asked for my pain medication yet, because I don’t like feeling out of control. I finally ask for the medication, as I’m trying to sleep and a few tears slip out. It’s a small amount and it allows me to fall asleep in a hydrocodone-induced haze.
After some blood work and the second bone marrow biopsy, I’m to begin my first round of chemo.
But I’ll save that for another blog…
Saturday, March 26, 2011
Dr. Strangelove or How I Learned to Stop Worrying and Love the Mass
Picking up where I last left off…
I ended up going to the hospital Saturday rather than wait for a biopsy appointment on Wednesday.
It’s been quite the roller coaster. I have been at the hospital for over a week. It has almost become a second home and I’ve basically moved in.
My primary doctor made a few calls to get me admitted as fast as possible to a local hospital. Without hesitation, I was hooked onto an IV in the IMCU. It would be easy to consider the doctors and nurses sadists (you want to take a piece of what from where?), but my care has been quite good.
A few mini-breakdowns in front of nurses, doctors, family, and friends were all tears of uncertainty. Each time I thought I couldn’t possibly do another test, I would finally get a break. My sense of humor hasn’t faltered, but I feel so unlike myself. When I look in the mirror, after I drag my dance partner (my name for the IV pole) with me to the bathroom, I’m surprised who looks back. It’s me, but something is different.
Days and nights have bled together and I don’t know the date until I stare at the whiteboard that names the nurses and techs in charge of me. Though the minutes and hours seem to move slowly, as if I stare at the clock, the hands would start going backwards than forward.
This past week, I sat and waited for tests, procedures, test results, and doctors’ visits. Biding my time became a game of keeping my sanity and not getting overly emotional. As I told my family and friends: panicking and getting upset over all of it will not help someone who is coughing all the time.
Since I had pneumonia behind the mass, I was treated immediately for that. As antibiotics have been pumped into my body, I went through routine tests, such as blood work, to discover the identity of the mass.
I had a bronchoscopy, which the nurses refer to as a “bronch.” I was put under anesthesia and a tube with a camera down my throat allowed the Pulmonologist to see anything related to the blood from my lungs and possibly take some cells to test. He found the results unremarkable and saw no warning signs for the bleeding, indicating that the bleeding must be from the pneumonia.
In order to get a good sample of cells from the mass, I underwent a CT-guided biopsy in my chest. The mass is close to the front just left of my sternum. A local anesthesia was applied and it was surreal to see foot-long needles going into my body. Let’s just say, after I saw the first one, I looked to the right for subsequent tissue samples.
The tissues in the preliminary results, in conjunction with my blood work, appeared to indicate nothing special. However, in order to find the tiny cells, called B-cells, that typically surround the healthy ones in cancer, my biopsied cells were sent to a Dallas lab so they could use special dyes.
Over 24 hours later of what felt like the longest wait ever, I received the results:
I have Stage 1E Non-Hodgkins Lymphoma
I really wanted to prevent my mass from feeling a heightened sense of superiority with scientific names and colloquialisms. Hell, I could call it “that thing” and gotten on with my day. Then again, I feel like someone in AA introducing myself: Hi, my name is Diana, I’m 26 years old and I have cancer. Saying it like that gives one the sensation of getting hit with a ton of bricks, as it did with me, despite its truth.
Thus far, I've been amazed how much people can go through and survive and move on. I take this to heart as I go through my own journey to kick this lymphoma despite the chemo treatments, losing hair, multitudes of tests, and putting my future career on hold (for only a little bit).
This is my journey I share with you.
To be continued...
I ended up going to the hospital Saturday rather than wait for a biopsy appointment on Wednesday.
It’s been quite the roller coaster. I have been at the hospital for over a week. It has almost become a second home and I’ve basically moved in.
My primary doctor made a few calls to get me admitted as fast as possible to a local hospital. Without hesitation, I was hooked onto an IV in the IMCU. It would be easy to consider the doctors and nurses sadists (you want to take a piece of what from where?), but my care has been quite good.
A few mini-breakdowns in front of nurses, doctors, family, and friends were all tears of uncertainty. Each time I thought I couldn’t possibly do another test, I would finally get a break. My sense of humor hasn’t faltered, but I feel so unlike myself. When I look in the mirror, after I drag my dance partner (my name for the IV pole) with me to the bathroom, I’m surprised who looks back. It’s me, but something is different.
Days and nights have bled together and I don’t know the date until I stare at the whiteboard that names the nurses and techs in charge of me. Though the minutes and hours seem to move slowly, as if I stare at the clock, the hands would start going backwards than forward.
This past week, I sat and waited for tests, procedures, test results, and doctors’ visits. Biding my time became a game of keeping my sanity and not getting overly emotional. As I told my family and friends: panicking and getting upset over all of it will not help someone who is coughing all the time.
Since I had pneumonia behind the mass, I was treated immediately for that. As antibiotics have been pumped into my body, I went through routine tests, such as blood work, to discover the identity of the mass.
I had a bronchoscopy, which the nurses refer to as a “bronch.” I was put under anesthesia and a tube with a camera down my throat allowed the Pulmonologist to see anything related to the blood from my lungs and possibly take some cells to test. He found the results unremarkable and saw no warning signs for the bleeding, indicating that the bleeding must be from the pneumonia.
In order to get a good sample of cells from the mass, I underwent a CT-guided biopsy in my chest. The mass is close to the front just left of my sternum. A local anesthesia was applied and it was surreal to see foot-long needles going into my body. Let’s just say, after I saw the first one, I looked to the right for subsequent tissue samples.
The tissues in the preliminary results, in conjunction with my blood work, appeared to indicate nothing special. However, in order to find the tiny cells, called B-cells, that typically surround the healthy ones in cancer, my biopsied cells were sent to a Dallas lab so they could use special dyes.
Over 24 hours later of what felt like the longest wait ever, I received the results:
I have Stage 1E Non-Hodgkins Lymphoma
I really wanted to prevent my mass from feeling a heightened sense of superiority with scientific names and colloquialisms. Hell, I could call it “that thing” and gotten on with my day. Then again, I feel like someone in AA introducing myself: Hi, my name is Diana, I’m 26 years old and I have cancer. Saying it like that gives one the sensation of getting hit with a ton of bricks, as it did with me, despite its truth.
Thus far, I've been amazed how much people can go through and survive and move on. I take this to heart as I go through my own journey to kick this lymphoma despite the chemo treatments, losing hair, multitudes of tests, and putting my future career on hold (for only a little bit).
This is my journey I share with you.
To be continued...
Friday, March 18, 2011
If mass is a measurement of matter, then what is the matter with me?
This waiting game is no fun. I want off this train. For the last few days, I wince and brace myself when I cough because it’s blood. Thankfully, it’s mostly in the morning and discreet, so the rest of the day I don’t have to hack on some unsuspecting person.
In one doctor’s visit this week, I have been poked and prodded: blood taken, urine sample, steroid shots, chest x-ray, and an EKG. Then I’m sent immediately to an imaging center and they take a CT scan of my lungs without contrast and with contrast. The technician is nothing but cheerful and pleasant during the relatively fast procedure. If anyone has had a HIDA scan done (from the years of my gallbladder woes), this definitely seemed quick by comparison. The one caveat is that the contrast made me feel flushed from head to toe and like I was peeing in my pants. “No one has peed on this table during this test,” the technician assures me.
Back at the doctor’s office, with the results sent over, the doctor begins with: “I really hate this part of my job.”
I would like to say one thing before continuing: no good has come from such a disclaimer. Advertisements might have suckered me in the past to seeing bad movies or buying useless products. Cliffhangers for television might have been born out of such carefully scripted lines, but realistically, no good can come from an opening like that.
The doctor hands me the report of the CT scan and it’s filled with medical terms I know I’ll have to look up later. Some things stick out like: “large mediastinal mass” and “suspicious for lymphoma and thymoma” and “left pleural effusion” and “atelectasis”. Basically, what I find out is that I have an apple-sized “soft tissue” mass within my left lung. I have a chronic cough due to it pushing on my esophagus and my heart. And they don’t know what it is.
Now before it seems inevitable I would like nothing more than to jump off a cliff mentally when I’m receiving this news, I find myself reconstructing my fatigue and my little aches and pains within the past months that I had figured amounted to nothing. The lesson learned here is that: don’t be a hypochondriac, but if something doesn’t feel right, figure out what’s wrong. I, perhaps, in my busy work and school life, neglected to think of something important: myself.
Finally, for the important information: I have a biopsy consultation scheduled for the middle of the upcoming week. I’m trying to maintain a sense of normalcy and fighting back the urge to panic (cliff, anyone?) in the next few days. If, indeed, a biopsy is needed, the 12-year old boy in me thinks: they’re going to stick a needle in my chest? Cool! Though the adult in me is scared shitless and grateful I won’t be awake during such a procedure.
This blog post is not intended to allow myself to wallow in self-pity. It’s intended to get some things off my chest (see? I still have a cheap sense of humor through all this) and give myself some time to reflect as I wait.
Anyone who has sat in a waiting room understands this: waiting sucks. Mentally, I’m preparing myself to receive the wide spectrum of results and opinions.
And so, I sit and wait.
To be continued…
In one doctor’s visit this week, I have been poked and prodded: blood taken, urine sample, steroid shots, chest x-ray, and an EKG. Then I’m sent immediately to an imaging center and they take a CT scan of my lungs without contrast and with contrast. The technician is nothing but cheerful and pleasant during the relatively fast procedure. If anyone has had a HIDA scan done (from the years of my gallbladder woes), this definitely seemed quick by comparison. The one caveat is that the contrast made me feel flushed from head to toe and like I was peeing in my pants. “No one has peed on this table during this test,” the technician assures me.
Back at the doctor’s office, with the results sent over, the doctor begins with: “I really hate this part of my job.”
I would like to say one thing before continuing: no good has come from such a disclaimer. Advertisements might have suckered me in the past to seeing bad movies or buying useless products. Cliffhangers for television might have been born out of such carefully scripted lines, but realistically, no good can come from an opening like that.
The doctor hands me the report of the CT scan and it’s filled with medical terms I know I’ll have to look up later. Some things stick out like: “large mediastinal mass” and “suspicious for lymphoma and thymoma” and “left pleural effusion” and “atelectasis”. Basically, what I find out is that I have an apple-sized “soft tissue” mass within my left lung. I have a chronic cough due to it pushing on my esophagus and my heart. And they don’t know what it is.
Now before it seems inevitable I would like nothing more than to jump off a cliff mentally when I’m receiving this news, I find myself reconstructing my fatigue and my little aches and pains within the past months that I had figured amounted to nothing. The lesson learned here is that: don’t be a hypochondriac, but if something doesn’t feel right, figure out what’s wrong. I, perhaps, in my busy work and school life, neglected to think of something important: myself.
Finally, for the important information: I have a biopsy consultation scheduled for the middle of the upcoming week. I’m trying to maintain a sense of normalcy and fighting back the urge to panic (cliff, anyone?) in the next few days. If, indeed, a biopsy is needed, the 12-year old boy in me thinks: they’re going to stick a needle in my chest? Cool! Though the adult in me is scared shitless and grateful I won’t be awake during such a procedure.
This blog post is not intended to allow myself to wallow in self-pity. It’s intended to get some things off my chest (see? I still have a cheap sense of humor through all this) and give myself some time to reflect as I wait.
Anyone who has sat in a waiting room understands this: waiting sucks. Mentally, I’m preparing myself to receive the wide spectrum of results and opinions.
And so, I sit and wait.
To be continued…
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