Sunday, February 27, 2011
Unfathomable love
I can barely say the Sorrowful Mysteries anymore because they make me feel like such a wimp. I've been poked and pricked with more needles in the last four days than I ever want to count. And all the ongoing little sufferings I can't even bear to list - Oh my gosh! If you haven't had cancer or something horrible like it, you can't imagine, and I hope you never do. But when I was saying the Fifth Sorrowful Mystery, The Crucifixion, I thought of how horrible all those needle pricks have been to me, but then. . . they were just needles, little tiny-itty bitty needles. . . and not big blunt nails. Jesus I'm so sorry I'm such a wimp. How did You do it?? Your Love must be something of the splendor of the universe to have born that. This is why I'm so devoted to the Sacred Heart, because it represents His unfathomable love. Unfathomable.
Saturday, February 26, 2011
Colorado is beautiful again
My hospital room has a spectacular view of Pikes Peak. I mean spectacular. Breathtaking when you walk in and first see it. But I was so sick for my first four days here I hardly noticed. I probably should have been moved to a room with a view of the parking lot, so that someone who could appreciate the vista could have it. But I know I am really feeling better today because when I woke up this morning I saw the rising sun shine and the blue Colorado sky over the mountain range and I instinctively thought "Magnificent are Your works oh Lord, I will praise Your name forever."
So I'll give the story of this week but be brief. Second chemo ten days ago didn't ever subside. I never started feeling better or recovering really. First five days my husband had to do everything for the baby, and me really. Day six he was supposed to go back to work. The day started well enough, I was a little tired, but managed to get up and take care of baby, start some laundry and make a few calls, but suddenly as he was about to leave, I said "Honey I don't think you should go." I asked him if I could take a half hour nap before he left, but the nap didn't make me feel any better, and in fact I started getting chills. After an hour in the tub I was still shaking, and we called the Doc., who told us to come in. I've been "in" ever since.
Apparently I got some kind of infection. They have never been able to exactly locate the cause of the infection, but the strongest antibiotics they were giving me hadn't touched it after 24 hours so there was deep concern. During this time I was spiking fevers of 103 to 104. They decided to have a minor surgery to remove my "port" because as often happens with infections, the bacteria can latch onto the port and stick in the body. Also, as is par for the course, my white blood cell count was plummeting because I was approaching day 9 after chemo, which is it's lowest ebb.
Watching one's fever, for some reason made me feel like I was on some kind of numbers game at a casino. Every time a nurse would stick a thermometer in my ear I'd chant "low numbahs- come on low numbahs!" Then when I finally got the numbers I wanted I cheered like I'd won the lotto. The night after the port was removed the fevers went to 101-102. The next day and night 99-100, and early early this morning, I heard those happy four little words every cancer patient loves to hear. "Ninety-eight-point-six."
They are very hopeful I can go home tomorrow, Sunday. I am so eager to go to sleep in my own bed with husband nearby and my baby in the next room. I miss them both so much. I only got to have her for an hour yesterday. But even after that I was exhausted. I can't wait to be her mommy again. I can't wait to be her mommy again.
There are many things I can, and hopefully will write about this experience, but this is enough for now. Temp is back down, white cell count is slowly ascending, and Colorado is beautiful again. Thank you all for the prayers and ongoing love. Just reading this blog is a gift to me. Now I have to think of a brilliant way to make this all sound positive for the Caring Bridge site. Hey - was that brief? lol!
So I'll give the story of this week but be brief. Second chemo ten days ago didn't ever subside. I never started feeling better or recovering really. First five days my husband had to do everything for the baby, and me really. Day six he was supposed to go back to work. The day started well enough, I was a little tired, but managed to get up and take care of baby, start some laundry and make a few calls, but suddenly as he was about to leave, I said "Honey I don't think you should go." I asked him if I could take a half hour nap before he left, but the nap didn't make me feel any better, and in fact I started getting chills. After an hour in the tub I was still shaking, and we called the Doc., who told us to come in. I've been "in" ever since.
Apparently I got some kind of infection. They have never been able to exactly locate the cause of the infection, but the strongest antibiotics they were giving me hadn't touched it after 24 hours so there was deep concern. During this time I was spiking fevers of 103 to 104. They decided to have a minor surgery to remove my "port" because as often happens with infections, the bacteria can latch onto the port and stick in the body. Also, as is par for the course, my white blood cell count was plummeting because I was approaching day 9 after chemo, which is it's lowest ebb.
Watching one's fever, for some reason made me feel like I was on some kind of numbers game at a casino. Every time a nurse would stick a thermometer in my ear I'd chant "low numbahs- come on low numbahs!" Then when I finally got the numbers I wanted I cheered like I'd won the lotto. The night after the port was removed the fevers went to 101-102. The next day and night 99-100, and early early this morning, I heard those happy four little words every cancer patient loves to hear. "Ninety-eight-point-six."
They are very hopeful I can go home tomorrow, Sunday. I am so eager to go to sleep in my own bed with husband nearby and my baby in the next room. I miss them both so much. I only got to have her for an hour yesterday. But even after that I was exhausted. I can't wait to be her mommy again. I can't wait to be her mommy again.
There are many things I can, and hopefully will write about this experience, but this is enough for now. Temp is back down, white cell count is slowly ascending, and Colorado is beautiful again. Thank you all for the prayers and ongoing love. Just reading this blog is a gift to me. Now I have to think of a brilliant way to make this all sound positive for the Caring Bridge site. Hey - was that brief? lol!
Thursday, February 24, 2011
update
Okay so the last post was written several days ago, right before going into the hospital and I just got onto a computer tonight. I'm in the hospital and will come out with a description of the last four days in an upcoming post. Suffice for now to say that' I've been pretty miserable, but tonight for the first time I feel a little better. Thank you for the prayers. Will give details later.
V
V
The Short List
There is a whole long list of people I'm not allowed to talk to. Or at least I'm supposed to try something between running away from them in the parking lot, or just courteously kicking them out of my house. My husband has made this list, and it grows every day.
There are some cold hard rules to the list. For example anytime he walks in the house and I'm crying, the person sitting across from me automatically gets the blame. They go on the long list. We've had arguments about this rule. This standard almost got me into deep trouble once when he walked in right after a bad news phone call from a doctor, and I happened to be sitting across from my cousin. After much hard work, I convinced him that she was not to blame for my crying and she was allowed back onto the short list. Phew.
However, the long list certainly has its merits. Other members of the long list include a student and good friend of mine who can't seem to come into the house without three "cancer nightmare stories." First time she came, she told me my "hair would grow back but it would be white and thin." On the same visit she told me I'd have to "wash all my veggies in bleach," and that yes, "something did cause the cancer, something I did, it was somehow my fault. . . but I'd never know what it was." She knew so much, as she told me, because her best friend died of breast cancer after an eighteen year battle. . . . The second time she came into the house she told me a charming story about how I was going to lose all sense of taste and then insisted that I "suck it up" and go watch other singers perform and be stinking happy for them. Both visits left me in tears for hours. She's now only allowed into the house for her lesson and to talk strictly music.
Surprisingly the worst offenders on the long list are the breast cancer survivors. They can't help themselves but come up to me after Mass and say the, honestly, the STUPIDEST things. Things like "I mean I finished radiation six months ago, but it still burns me all over my body!" and my favorite " I just hope and pray for your sake that it's estrogen negative cancer. That is my prayer for you - estrogen negative." It was estrogen positive. Or the all-time fav "The weirdest part was when they had to graft my nipple to my butt for six months." . . . .AGHAGHAGHAGHAGHAGH!!!!!!!!
Finally there is the student I had to literally throw out of my house one day because his brother was "cured" of an incurable cancer using alternative methods by an institute in California. He can't seem to get past an hour in my presence without bringing this up and how chemo will burn up my body and radiation will ruin my life. . . . This guy is almost on my husband's hit list. . . which is one step below the long list. I've explained to him multiple times that I have a very aggressive cancer and we don't have time to waste, and that it generally kills younger women faster than older ones. . . but he doesn't seem to care. . .
Other people on the long list include the pladituders. "Oh God must really love you to be sending you this suffering." "Oh you're going to be a better stronger person when this is over." "God has a plan and we have to trust that He knows best." "You should be happy that He has sent you this suffering. I am so happy for you." Dear readers, please PLEASE never tell someone what they SHOULD be experiencing spiritually at a time of trial. Here's what you should say "I'm so sorry - I'm praying for you. Here's what I can do for you. . . ." Leave the platitudes for the Hallmark Cards.
The short list on the other hand is the VERY short list of people who seem to know and understand what to do and what I need to hear. They generally never make me cry. They always talk in positive terms and make me hear things I don't even want to believe. "You can do it. You can get through this. . . " That sort of stuff. At the all time top of the short list is my friend in New York who is also going through chemo right now. She says exactly what I want to hear even if it's a lie (But if you asked her she'd never say it was a lie). "You - I just know you're going to get through chemo and they aren't going to find any trace of cancer in your body. I know it. And you're going to have another baby. I can see the baby, I can literally see it."
Other people on the short list include my mentor and friend Priscilla who I call whenever I'm really scared because I know no matter what she'll say "You're not going to die - now stop that!" and make me feel ridiculous for having thought it in the first place. Also on the short list are my best friend from back home Carrie, who always talks in hopeful terms and can always make me laugh, and my friend Silvia who tells me I'm wonderful and she admires me and I can get through this whenever I need it. Terry and Heather, and well, lolol anyone who knows this blog exists. These people love me, and I can feel their love, and in the end that's what I need.
Finally - anyone goes on the short list if they ask about the blog, I had one dear friend in CT who was limited to the Caring Bridge updates, which I'm trying to keep positive. She emailed me and basically said "Cut the @#%$. I want to know what's really going on." . . .short list.
There are some cold hard rules to the list. For example anytime he walks in the house and I'm crying, the person sitting across from me automatically gets the blame. They go on the long list. We've had arguments about this rule. This standard almost got me into deep trouble once when he walked in right after a bad news phone call from a doctor, and I happened to be sitting across from my cousin. After much hard work, I convinced him that she was not to blame for my crying and she was allowed back onto the short list. Phew.
However, the long list certainly has its merits. Other members of the long list include a student and good friend of mine who can't seem to come into the house without three "cancer nightmare stories." First time she came, she told me my "hair would grow back but it would be white and thin." On the same visit she told me I'd have to "wash all my veggies in bleach," and that yes, "something did cause the cancer, something I did, it was somehow my fault. . . but I'd never know what it was." She knew so much, as she told me, because her best friend died of breast cancer after an eighteen year battle. . . . The second time she came into the house she told me a charming story about how I was going to lose all sense of taste and then insisted that I "suck it up" and go watch other singers perform and be stinking happy for them. Both visits left me in tears for hours. She's now only allowed into the house for her lesson and to talk strictly music.
Surprisingly the worst offenders on the long list are the breast cancer survivors. They can't help themselves but come up to me after Mass and say the, honestly, the STUPIDEST things. Things like "I mean I finished radiation six months ago, but it still burns me all over my body!" and my favorite " I just hope and pray for your sake that it's estrogen negative cancer. That is my prayer for you - estrogen negative." It was estrogen positive. Or the all-time fav "The weirdest part was when they had to graft my nipple to my butt for six months." . . . .AGHAGHAGHAGHAGHAGH!!!!!!!!
Finally there is the student I had to literally throw out of my house one day because his brother was "cured" of an incurable cancer using alternative methods by an institute in California. He can't seem to get past an hour in my presence without bringing this up and how chemo will burn up my body and radiation will ruin my life. . . . This guy is almost on my husband's hit list. . . which is one step below the long list. I've explained to him multiple times that I have a very aggressive cancer and we don't have time to waste, and that it generally kills younger women faster than older ones. . . but he doesn't seem to care. . .
Other people on the long list include the pladituders. "Oh God must really love you to be sending you this suffering." "Oh you're going to be a better stronger person when this is over." "God has a plan and we have to trust that He knows best." "You should be happy that He has sent you this suffering. I am so happy for you." Dear readers, please PLEASE never tell someone what they SHOULD be experiencing spiritually at a time of trial. Here's what you should say "I'm so sorry - I'm praying for you. Here's what I can do for you. . . ." Leave the platitudes for the Hallmark Cards.
The short list on the other hand is the VERY short list of people who seem to know and understand what to do and what I need to hear. They generally never make me cry. They always talk in positive terms and make me hear things I don't even want to believe. "You can do it. You can get through this. . . " That sort of stuff. At the all time top of the short list is my friend in New York who is also going through chemo right now. She says exactly what I want to hear even if it's a lie (But if you asked her she'd never say it was a lie). "You - I just know you're going to get through chemo and they aren't going to find any trace of cancer in your body. I know it. And you're going to have another baby. I can see the baby, I can literally see it."
Other people on the short list include my mentor and friend Priscilla who I call whenever I'm really scared because I know no matter what she'll say "You're not going to die - now stop that!" and make me feel ridiculous for having thought it in the first place. Also on the short list are my best friend from back home Carrie, who always talks in hopeful terms and can always make me laugh, and my friend Silvia who tells me I'm wonderful and she admires me and I can get through this whenever I need it. Terry and Heather, and well, lolol anyone who knows this blog exists. These people love me, and I can feel their love, and in the end that's what I need.
Finally - anyone goes on the short list if they ask about the blog, I had one dear friend in CT who was limited to the Caring Bridge updates, which I'm trying to keep positive. She emailed me and basically said "Cut the @#%$. I want to know what's really going on." . . .short list.
Tuesday, February 8, 2011
The idiots and the prodigies
I've always had a theory that we all have a calling by God. A unique and individual calling. And if we somehow in life find that calling, we will be fulfilling our potential to the maximum and bringing some kind of glory to the universe. Haven't you ever met someone who just sort of "glowed" when they did what they did best? Not sure if that explains it right, but let's see if this does.
First there are the idiots. Before my second biopsy I sat down with the technician to look at the most recent mammograms. She was a middle aged woman about forty-five with too-early wrinkled skin, I suspected from smoking. She sat in a rather slouched over manner and always seemed to have a look of annoyance on her face. Her voice was dead-pan and completely lifeless. In the theater business we would say she was "phoning it in."
She pointed out the new calcification they would be testing that morning on the right side. Then on a whim she took out the pictures of the left side, the one we already knew held cancer. She turned the computer screen so I could see and she pointed to a dense area of white specks and said "That's your tumor." Then I noticed that the white specks stretched beyond what looked like the most dense area. I also noticed that at the bottom of the screen was a little ruler with the letters "cm" at the end of it.
"They told me it was 1.4 cm." I said looking for assurance.
"Yeah?" She replied. "huh. Well it looks like your calcification stretches all the way over here."
"Well is that ruler on the bottom right? That would mean the tumor is over 5cm."
"Yeah. You're right. I don't know why they told you 1.4. From what I can see it measures about. . . 5.5cm"
"What?!?"
I had been holding on to the hope that I was reading the darn thing wrong, because I didn't understand it, but here she was confirming my worst fears. The difference between 1.4 and 5.5 was the difference between Stage 1 and Stage 4. It was the difference between lumpectomy and mastectomy.
"But - that's a huge difference!"
"Yeah I know" she said nonchalantly.
My eyes began to swell up.
"But that's the difference between Stage 1 and Stage 4!"
"Oh is it?" She sipped on her coffee.
I began to sob convulsively. But still she persisted.
"Well I'm sorry but I don't know why they told you that. All I can tell you is what I see here and it's clearly bigger than 5cm."
I started shaking between sobs. But still she persisted.
"I mean did they tell you that on the pathology report?"
I looked confused. "What's a pathology report?"
She rolled her eyes.
"You didn't get a pathology report?"
"I don't know! I don't know what you're talking about!"
Sobbing, massive sobbing, shaking, tears pouring down. I reached for the box of Kleenex on her desk. Apparently a lot of people cry in here. . . .why else would there be Kleenex? Still she persisted.
"Well look, how did you find out it was cancer?"
"They sent a sheet of paper to my OB. Here-" I reached trembling into what I have come to call my "cancer bag" and grabbed the binder with all the various paperwork. Frantically I flipped through the mass of receipts, letters, and information sheets to find that original scrap of paper. That original "You have breast cancer." Maybe if I could just see it in writing, it still wouldn't be as bad as all that. If I could just find that stupid piece of paper. What was all this stuff? Where IS IT?!?!?
Finally I found it. "Here!" I basically threw it across the desk at the woman who was looking at me as though sedated over the rim of her cup.
"Well this is the report. I guess you should trust what they tell you."
"What do you mean?!" What DID she mean? Should we ever NOT trust a report? Do they make huge 4cm mistakes all the time???
"Look I'm sorry but all I can tell you is what I see here, and that is that the tumor is, well over 5cm. See - look at it yourself."
"I don't need to look at it myself!" More tears, another Kleenex. Another sip of coffee and a lean back in her swivel chair. Then finally a moment of revelation. Maybe, just maybe she should shut up because she didn't know what she was talking about.
"Well, you know, you should really trust the pathology report. I mean, they understand these things better than me. I think you can just trust your pathology report."
Then the doctor, by the Grace of God, finally walked in. He took a look at the situation, saw his frantic patient convulsively sobbing minutes before surgery and asked what was going on. In less than a minute he confirmed the "pathology report" and reassured me that just because we see calcification elsewhere in the breast doesn't mean they are cancer or a part of the tumor.
Idiot.
Then there are the prodigies.
The day I went in for my PET scan I was greeted at the door by the smiling face of a man I like to call Wayne. That wasn't his name, but he reminded me of Wayne Brady from the TV show "Whose Line is it Anyway:" African American, semi-short, good shape, bouncy full of energy and very chipper. Right away I knew, even if subconsciously amidst the thick cloud of fear that enveloped me, that around this man there was a "glow." I tried to ignore it and proceed with my horror.
Now a PET scan is not a fun thing for a number of reasons. First of all they put you in a tube that's rather enclosed. My doctor had given me a pill to take to calm me down for the scan since I am claustrophobic, but I stupidly looked at the scanner from the outside and said "I don't need the pill." Later when they started rolling me into the tube my whole body started screaming, "I should've taken the %$*# pill!!"
Another reason a PET scan isn't fun is they inject you with something they like to call "radioactive material." Yummy. For someone who has always been such a health-freak she wouldn't drink soda, the thought of this glowing green smoothie going into my veins was just a joy-ride.
Lastly, the PET scan results can save or condemn you. It basically tells you if the cancer has spread to other organs in your body. A clear PET scan is a whoo-hoo! A positive PET scan is a call to the funeral home. Basically a PET scan is a scary scary thing.
"Hey how you doing to day?" He chirped as he bounced up to me in the waiting room. I had been told to strip down and put on a hospital johnny. "Don't you just love those johnny gowns? " Sarcastically with a grin.
"I'm cold."
"Alright well I'll take care of that for you - you just come back here and follow me, it's much warmer where you'll be waiting, and I'll get you a nice warm blanket too."
Wayne almost skipped down the hall. I was at first annoyed by it. Didn't he know this was a serious place? Didn't he know that the results of today could determine the rest of my life? Shouldn't he be more subdued?
As he prepped me for my procedure he talked gaily about things like they were nothing. Everything I was doing today was no big deal, piece of cake. He asked me about myself and got me talking to him. I caught myself laughing a couple times reluctantly. He found out I'd met my husband on EHarmony and expressed with enthusiasm a desire to know all the details of our matching experience. Of course everyone loves to tell their love story. We shared our philosophies about romantic love and expressed our mutual life-contentedness at having a partner with whom we were so in love. He told me his love story.
At some point during all this sharing and talking he had put the IV into my arm. There was no fidgeting or searching around for a vein like their usually is. No plucking or pricking or tapping my arms and looking at my veins with a deep concern that "there might be a problem." The darn thing just went in and that was it. Less than a second. It was so easy and smooth and he hadn't even stopped talking that I was surprised that it had happened. I looked at my arm and realized there was an IV in it and I said "How'd you do that?"
"What that?" He pointed at it and laughed. "The -uh- IV?" More laughter. He actually buckled over.
"No I'm serious - everybody always tells me I've got small veins - it's usually such a torment."
"Nothin' wrong with your veins. You've got a good vein right there. Whoever told you that's a bunch of idiots." (Interesting choice of word).
"Huh- you just like, put it in."
He laughed again. "Well what'd you expect me to do?"
"Well a lot of people like to go fishing in there." More laughter.
"Yeah well - you flinched a little when I put it in, I could tell you must've had some bad experience or something."
I had flinched?? I had flinched??? Surely I know when I flinch. I haven't lost all sense of body awareness yet. And besides, I'm the one who's flinching here- shouldn't I notice it before he does? And did he even stop for a second when I did? I didn't notice him noticing me flinching. I didn't notice squat.
I flinched??
He gave me some magazines told me they were all terrible and left me to absorb the radioactive material into my bloodstream. He checked on me every couple minutes. How was was I doin? Dd I want another blanket? Was I warm enough? Would I like some juice or a snack or something? Did I need him to just come in an sit and chat - cause he could do that if I wanted him too. . .
Then the scan and that terrible moment of panic as they rolled me in. Wayne kept talking to me from the outside for the first couple minutes.
"Are you alright? You sure? I can wheel you out now if you need it."
My whole body was screaming in terror, I forced myself to keep my eyes closed the whole time and prayed and tried to visualize myself somewhere else.
"I can stay right here and talk to you if you need me to. I'm fine with that."
I let him go. Somehow I thought I needed to put all my focus on keeping myself calm.
Regardless he came in a couple times to "check on me."
"Do you like music - I've got music I can turn on if you think that will help."
"uh- yeah I guess that would help."
"What kind you like?" I've got Satellite Radio - I can get you anything you want."
"Uh I guess, Classical?"
"Okay you got it."
I couldn't see him but I swear I heard him bounce over to the far side of the room and then suddenly there was music (which in a cruel sick twisted sense of fate happened to be John Williams theme music from the movie Superman. Talk about surreal.)
At the end of my test Wayne guided me to the exit and finished our conversations. I actually felt like my day was better for having come here that day. I felt like MY DAY WAS BETTER FOR HAVING HAD A PET SCAN.
Prodigy.
I think everyone should try to find their gift. That job that they were meant to do - and never settle for the one you know - or that's convenient, or safe, or just a paycheck. Everyone should keep looking - their whole lives even. Because even if Wayne became a PET scan technician two days before he died. . . they would have been a great two days, and made somebody's tip through cancer a lot better.
First there are the idiots. Before my second biopsy I sat down with the technician to look at the most recent mammograms. She was a middle aged woman about forty-five with too-early wrinkled skin, I suspected from smoking. She sat in a rather slouched over manner and always seemed to have a look of annoyance on her face. Her voice was dead-pan and completely lifeless. In the theater business we would say she was "phoning it in."
She pointed out the new calcification they would be testing that morning on the right side. Then on a whim she took out the pictures of the left side, the one we already knew held cancer. She turned the computer screen so I could see and she pointed to a dense area of white specks and said "That's your tumor." Then I noticed that the white specks stretched beyond what looked like the most dense area. I also noticed that at the bottom of the screen was a little ruler with the letters "cm" at the end of it.
"They told me it was 1.4 cm." I said looking for assurance.
"Yeah?" She replied. "huh. Well it looks like your calcification stretches all the way over here."
"Well is that ruler on the bottom right? That would mean the tumor is over 5cm."
"Yeah. You're right. I don't know why they told you 1.4. From what I can see it measures about. . . 5.5cm"
"What?!?"
I had been holding on to the hope that I was reading the darn thing wrong, because I didn't understand it, but here she was confirming my worst fears. The difference between 1.4 and 5.5 was the difference between Stage 1 and Stage 4. It was the difference between lumpectomy and mastectomy.
"But - that's a huge difference!"
"Yeah I know" she said nonchalantly.
My eyes began to swell up.
"But that's the difference between Stage 1 and Stage 4!"
"Oh is it?" She sipped on her coffee.
I began to sob convulsively. But still she persisted.
"Well I'm sorry but I don't know why they told you that. All I can tell you is what I see here and it's clearly bigger than 5cm."
I started shaking between sobs. But still she persisted.
"I mean did they tell you that on the pathology report?"
I looked confused. "What's a pathology report?"
She rolled her eyes.
"You didn't get a pathology report?"
"I don't know! I don't know what you're talking about!"
Sobbing, massive sobbing, shaking, tears pouring down. I reached for the box of Kleenex on her desk. Apparently a lot of people cry in here. . . .why else would there be Kleenex? Still she persisted.
"Well look, how did you find out it was cancer?"
"They sent a sheet of paper to my OB. Here-" I reached trembling into what I have come to call my "cancer bag" and grabbed the binder with all the various paperwork. Frantically I flipped through the mass of receipts, letters, and information sheets to find that original scrap of paper. That original "You have breast cancer." Maybe if I could just see it in writing, it still wouldn't be as bad as all that. If I could just find that stupid piece of paper. What was all this stuff? Where IS IT?!?!?
Finally I found it. "Here!" I basically threw it across the desk at the woman who was looking at me as though sedated over the rim of her cup.
"Well this is the report. I guess you should trust what they tell you."
"What do you mean?!" What DID she mean? Should we ever NOT trust a report? Do they make huge 4cm mistakes all the time???
"Look I'm sorry but all I can tell you is what I see here, and that is that the tumor is, well over 5cm. See - look at it yourself."
"I don't need to look at it myself!" More tears, another Kleenex. Another sip of coffee and a lean back in her swivel chair. Then finally a moment of revelation. Maybe, just maybe she should shut up because she didn't know what she was talking about.
"Well, you know, you should really trust the pathology report. I mean, they understand these things better than me. I think you can just trust your pathology report."
Then the doctor, by the Grace of God, finally walked in. He took a look at the situation, saw his frantic patient convulsively sobbing minutes before surgery and asked what was going on. In less than a minute he confirmed the "pathology report" and reassured me that just because we see calcification elsewhere in the breast doesn't mean they are cancer or a part of the tumor.
Idiot.
Then there are the prodigies.
The day I went in for my PET scan I was greeted at the door by the smiling face of a man I like to call Wayne. That wasn't his name, but he reminded me of Wayne Brady from the TV show "Whose Line is it Anyway:" African American, semi-short, good shape, bouncy full of energy and very chipper. Right away I knew, even if subconsciously amidst the thick cloud of fear that enveloped me, that around this man there was a "glow." I tried to ignore it and proceed with my horror.
Now a PET scan is not a fun thing for a number of reasons. First of all they put you in a tube that's rather enclosed. My doctor had given me a pill to take to calm me down for the scan since I am claustrophobic, but I stupidly looked at the scanner from the outside and said "I don't need the pill." Later when they started rolling me into the tube my whole body started screaming, "I should've taken the %$*# pill!!"
Another reason a PET scan isn't fun is they inject you with something they like to call "radioactive material." Yummy. For someone who has always been such a health-freak she wouldn't drink soda, the thought of this glowing green smoothie going into my veins was just a joy-ride.
Lastly, the PET scan results can save or condemn you. It basically tells you if the cancer has spread to other organs in your body. A clear PET scan is a whoo-hoo! A positive PET scan is a call to the funeral home. Basically a PET scan is a scary scary thing.
"Hey how you doing to day?" He chirped as he bounced up to me in the waiting room. I had been told to strip down and put on a hospital johnny. "Don't you just love those johnny gowns? " Sarcastically with a grin.
"I'm cold."
"Alright well I'll take care of that for you - you just come back here and follow me, it's much warmer where you'll be waiting, and I'll get you a nice warm blanket too."
Wayne almost skipped down the hall. I was at first annoyed by it. Didn't he know this was a serious place? Didn't he know that the results of today could determine the rest of my life? Shouldn't he be more subdued?
As he prepped me for my procedure he talked gaily about things like they were nothing. Everything I was doing today was no big deal, piece of cake. He asked me about myself and got me talking to him. I caught myself laughing a couple times reluctantly. He found out I'd met my husband on EHarmony and expressed with enthusiasm a desire to know all the details of our matching experience. Of course everyone loves to tell their love story. We shared our philosophies about romantic love and expressed our mutual life-contentedness at having a partner with whom we were so in love. He told me his love story.
At some point during all this sharing and talking he had put the IV into my arm. There was no fidgeting or searching around for a vein like their usually is. No plucking or pricking or tapping my arms and looking at my veins with a deep concern that "there might be a problem." The darn thing just went in and that was it. Less than a second. It was so easy and smooth and he hadn't even stopped talking that I was surprised that it had happened. I looked at my arm and realized there was an IV in it and I said "How'd you do that?"
"What that?" He pointed at it and laughed. "The -uh- IV?" More laughter. He actually buckled over.
"No I'm serious - everybody always tells me I've got small veins - it's usually such a torment."
"Nothin' wrong with your veins. You've got a good vein right there. Whoever told you that's a bunch of idiots." (Interesting choice of word).
"Huh- you just like, put it in."
He laughed again. "Well what'd you expect me to do?"
"Well a lot of people like to go fishing in there." More laughter.
"Yeah well - you flinched a little when I put it in, I could tell you must've had some bad experience or something."
I had flinched?? I had flinched??? Surely I know when I flinch. I haven't lost all sense of body awareness yet. And besides, I'm the one who's flinching here- shouldn't I notice it before he does? And did he even stop for a second when I did? I didn't notice him noticing me flinching. I didn't notice squat.
I flinched??
He gave me some magazines told me they were all terrible and left me to absorb the radioactive material into my bloodstream. He checked on me every couple minutes. How was was I doin? Dd I want another blanket? Was I warm enough? Would I like some juice or a snack or something? Did I need him to just come in an sit and chat - cause he could do that if I wanted him too. . .
Then the scan and that terrible moment of panic as they rolled me in. Wayne kept talking to me from the outside for the first couple minutes.
"Are you alright? You sure? I can wheel you out now if you need it."
My whole body was screaming in terror, I forced myself to keep my eyes closed the whole time and prayed and tried to visualize myself somewhere else.
"I can stay right here and talk to you if you need me to. I'm fine with that."
I let him go. Somehow I thought I needed to put all my focus on keeping myself calm.
Regardless he came in a couple times to "check on me."
"Do you like music - I've got music I can turn on if you think that will help."
"uh- yeah I guess that would help."
"What kind you like?" I've got Satellite Radio - I can get you anything you want."
"Uh I guess, Classical?"
"Okay you got it."
I couldn't see him but I swear I heard him bounce over to the far side of the room and then suddenly there was music (which in a cruel sick twisted sense of fate happened to be John Williams theme music from the movie Superman. Talk about surreal.)
At the end of my test Wayne guided me to the exit and finished our conversations. I actually felt like my day was better for having come here that day. I felt like MY DAY WAS BETTER FOR HAVING HAD A PET SCAN.
Prodigy.
I think everyone should try to find their gift. That job that they were meant to do - and never settle for the one you know - or that's convenient, or safe, or just a paycheck. Everyone should keep looking - their whole lives even. Because even if Wayne became a PET scan technician two days before he died. . . they would have been a great two days, and made somebody's tip through cancer a lot better.
Thursday, February 3, 2011
My little girl
She is so beautiful. Every part of the experience of her is wonderful. Even changing poopy diapers is a form of love-joy. My favorite time is in the morning when she calls to us from her little crib and I lean over and she recognizes me. Then she lets loose a big smile and her whole body curls up in pleasure. I don't pick her up right away. I just try to enjoy that moment for a while and we chat a bit before starting the day. It doesn't last long though. The discomfort of a dirty diaper eventually inches in on our conversation. I also love putting her to sleep at night. We have a ritual where I rock her in my arms and say the Rosary while giving her a bottle. She loves it. Knows when it's coming. And almost never puts up a fuss.
Now Gary, or a sitter has to do all baby lifting. The first day of chemo was really bad. I came home and threw up all day and sat on the sofa dizzy, tired and experiencing more nausea that I thought was possible. They had prescribed me a ton of nausea meds, but I just kept throwing them up. So finally at about 9pm my husband called the 24hour clinic and the doctor told him to get to a 24 hour pharmacy (a half hour drive each way!) to pick up a much stronger med that would at least put me out.
Everyone told me to drink lots of water the day of chemo - but I literally threw it all up. Morning of Day 2 we went immediately to the clinic to sit on a saline IV bag for a couple hours. They also inserted a permanent pump into my port which will distribute very powerful anti nausea meds at regular intervals - or if I get really bad I can push a button and get a jolt of meds. This definitely helps the nausea. I am nauseous, but am able to eat a little here and there. However these drugs make me very dizzy and tired so I feel very nervous about picking up baby. I find I literally wobble into walls. Luckily daddy has been home for the last three days, but I suspect he is beginning to realize what a challenge being the full-time care giver can be. I have no desire for him to learn that lesson. I want to pick up my baby, feed her and carry her and swing her. I want to play with her and entertain her and sing songs to her. I haven't sung to her in two days now. Will I ever sing again? Maybe after a couple more days? We hope to get the pump removed on Saturday morning.
Gary is struggling too. It's a lot for him - it would be for anyone. I remember the first three months alone with baby. Had to be the hardest most stressful months of my life. I used to love conducting the children's choir once a week because I finally felt like I was doing something I knew how to do. Now Gary's really on his own, and I understand the frustration he must be feeling. In the end though - he is a really good man, and the luckiest part of this whole process for me.
Still, whenever he gets tired of her, I am dying to hold her, but I feel so weak and dizzy. . . he can make her laugh quite often. I love to hear her laughter - her daddy does it best.
Before treatments began I used to think "I have to get through this for her." Then as the tests and pokes began I thought "she will get me through this." Now that I'm experiencing the chemo. "I have to get through this for her." I want to be her mommy again.
Not sure what the right thing to do here is. I really wanted to be the best case scenario patient. So many women just keep right on going to work during chemo. But I feel so tired and dizzy and nauseous. Am I doing something wrong? I want to do all the things I planned, like exercising and teaching some voice lessons. But will I be able to? What's the best thing to do here for the long term results? Sit it out and watch stupid TV or force myself to do activities I don't feel up to doing?
They are giving me some hormone shots that should help to alleviate the effect of the chemo on my fertility. It is not a guarantee fix and for many women doesn't work at all. But I have been told by several doctors that I will also gain a significant amount of weight from them. . . great.
Every time I see her I thank Jesus for my little girl. Sometimes in the quiet of my heart. Sometimes so others can hear me. Then Gary replies "I told you, you don't have to call me Jesus." :) Daddy can almost always make me laugh. There is a good possibility that we won't be able to have any more children after this. This makes me so sad, but double grateful for our little girl. Perhaps God will send an adoptive child our way? I can' look at the future anymore... All my life I was told to have goals. Long term goals, short term goals. What a bunch of cocky poop. Cancer changes everything. EVERYTHING. No more goals. Only living in the present - today and making the best of that.
At least that's my philosophy for today.
Now Gary, or a sitter has to do all baby lifting. The first day of chemo was really bad. I came home and threw up all day and sat on the sofa dizzy, tired and experiencing more nausea that I thought was possible. They had prescribed me a ton of nausea meds, but I just kept throwing them up. So finally at about 9pm my husband called the 24hour clinic and the doctor told him to get to a 24 hour pharmacy (a half hour drive each way!) to pick up a much stronger med that would at least put me out.
Everyone told me to drink lots of water the day of chemo - but I literally threw it all up. Morning of Day 2 we went immediately to the clinic to sit on a saline IV bag for a couple hours. They also inserted a permanent pump into my port which will distribute very powerful anti nausea meds at regular intervals - or if I get really bad I can push a button and get a jolt of meds. This definitely helps the nausea. I am nauseous, but am able to eat a little here and there. However these drugs make me very dizzy and tired so I feel very nervous about picking up baby. I find I literally wobble into walls. Luckily daddy has been home for the last three days, but I suspect he is beginning to realize what a challenge being the full-time care giver can be. I have no desire for him to learn that lesson. I want to pick up my baby, feed her and carry her and swing her. I want to play with her and entertain her and sing songs to her. I haven't sung to her in two days now. Will I ever sing again? Maybe after a couple more days? We hope to get the pump removed on Saturday morning.
Gary is struggling too. It's a lot for him - it would be for anyone. I remember the first three months alone with baby. Had to be the hardest most stressful months of my life. I used to love conducting the children's choir once a week because I finally felt like I was doing something I knew how to do. Now Gary's really on his own, and I understand the frustration he must be feeling. In the end though - he is a really good man, and the luckiest part of this whole process for me.
Still, whenever he gets tired of her, I am dying to hold her, but I feel so weak and dizzy. . . he can make her laugh quite often. I love to hear her laughter - her daddy does it best.
Before treatments began I used to think "I have to get through this for her." Then as the tests and pokes began I thought "she will get me through this." Now that I'm experiencing the chemo. "I have to get through this for her." I want to be her mommy again.
Not sure what the right thing to do here is. I really wanted to be the best case scenario patient. So many women just keep right on going to work during chemo. But I feel so tired and dizzy and nauseous. Am I doing something wrong? I want to do all the things I planned, like exercising and teaching some voice lessons. But will I be able to? What's the best thing to do here for the long term results? Sit it out and watch stupid TV or force myself to do activities I don't feel up to doing?
They are giving me some hormone shots that should help to alleviate the effect of the chemo on my fertility. It is not a guarantee fix and for many women doesn't work at all. But I have been told by several doctors that I will also gain a significant amount of weight from them. . . great.
Every time I see her I thank Jesus for my little girl. Sometimes in the quiet of my heart. Sometimes so others can hear me. Then Gary replies "I told you, you don't have to call me Jesus." :) Daddy can almost always make me laugh. There is a good possibility that we won't be able to have any more children after this. This makes me so sad, but double grateful for our little girl. Perhaps God will send an adoptive child our way? I can' look at the future anymore... All my life I was told to have goals. Long term goals, short term goals. What a bunch of cocky poop. Cancer changes everything. EVERYTHING. No more goals. Only living in the present - today and making the best of that.
At least that's my philosophy for today.
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