Man...I have been so stinking busy. I hate it. But, the upside is that the steroids I'm on keep me moving like the Energizer Bunny. And, while I hate knowing this is what is getting me through the day- let's face it, I AM getting through the day.
Side effects of 30 MGs of Prednisone include: no sleep- ever. And thank GOD for mineral makeup and Nars' Orgasm line. Without that stuff, I'd look like a zombie- what with the sexy dark circles under my eyes and gross baked potato colored skin.
Grouchiness: Oh yes...I am such a nightmare to be around. So, I tend to limit my interactions with humans to electronic only. As a matter of fact, I caught myself on more than one occasion, in a public setting, chewing folks out with my latest go to: "What did YOU just say?" Oh boy....Do you know just how much passive aggressive Seattle-lites enjoy responding to that question? Well, we're the fifth whitest city in the nation. So, take a stab.
Ok- so I can continue to bitch and complain- OR I can tell you what I did about it.
Well...I sought a second opinion with Dr. Andrei Shustov of the Seattle Cancer Care Alliance. Now Shustov is the guy I saw way, way, back when I got my initial diagnosis. He's the MAN when it comes to all things lymphoma related- as that's all he does. And, did I mention he's totally beautiful? Really....it's a shame that I stare so much at him. I hope his wife doesn't mind. Lucky bitch.
On the drive over to the appointment, I raged. Truly. I beat on the steering wheel shouting: "I hate this place! I hate this place!" Yes, because the steroids have turned me into a 3 year old...But, you know, I managed to calm the Hell down when my 44 year old brain reminded me that at least I have a place like SCCA to hate. Right? Amen!
Well I got there. Before I could chat with Shustov, I had to chat with his medical staff wonder woman. And let me just say this: She was ON HER GAME. She pulled out my 300 page file and quoted that shit like Shakespeare. Then she looked at me and said: "So, what can we do for you?"
I would have cried. But, really rage is more my thing these days. So, I didn't.
I explained all the crap going on with my lungs. Note taking ensued. I was told to hang tight for a few minutes so she could re-connect with Shustov and then she would send him in. Sigh.
Enter Andrei Shustov.
Dear God in heaven. He was a sight to behold. With his raven colored mane of hair, warm, soft hands he says to me in that yummy Eastern European accent: "Hello beautiful. You look wonderful. I am so happy to see you."
What the what?
And I told him- "Well, dark and lovely, I'm happy to see you too. And guess what? I don't have cancer any more." He laughed and congratulated me. And then we started in on what has been going on.
Shustov, man, he was like a breath of fresh air. The lymphedema that so puzzled my other docs was quickly explained with the following: "Well, you had lymphoma. While we cure the disease, your lymph nodes stay kind of funky. There's no cancer. But, they won't work properly, So, you get lymphedema. Next." That kind of shit.
Then we chatted about the lungs. Shustov issued the following proclamation- as only people with Eastern European accents can- "You are to go to our lung clinic. And, we need to get you off steroids. Now."
I asked him how I should proceed with follow-up care. Move from Swedish Issaquah to SCCA? He said, no. He loves Dr. Wahl. And, I know why. She's amazing. They also worked in a lab together. So, deep respect and admiration. Instead, they're gonna share me. Nice. I see Shustov again in December. Wahl in January.
And I see the lung team on November 6. The plan with them is to have them read all of my notes and biopsy reports, etc. And find out what they say. I am hoping that they too will work with George, as I really like him too. But you see, this lung business is all about cancer and cancer treatment. This is what they do at SCCA- all day, every day. And at this time in my life, I do believe it important to bring as many smarty-pants people to the table to get shit figured out.
Because, their opinions matter.
I want to dedicate this post to my dear friend, Malik Davis. Brotha- thank you for that gentle kick in the ass ("Yvette, who are you going to see for a second opinion?") that prompted me to make the phone call to SCCA. You're a life saver.
Wednesday, October 30, 2013
Thursday, October 17, 2013
CANCER: The Enemy is ME
Today is a most auspicious day; for it is one year ago today that I finished chemotherapy. Granted, I didn't know that at the time, as my lungs were beginning to show signs of wear and tear. But, November 16, 2012 was my very last dose of ABVD. THAT, my friends, is something to celebrate.
And on that note, I just returned from seeing my awesome lung guy, George.
I'm two weeks post lung biopsy. Two weeks on crazy steroids. And well life, seems to be ok. Sure, I'm not sleeping- at all. I AM a little bit crabby. And well, I am super thirsty. But I am able to get up, shower and put on clean clothes daily. That is something to truly celebrate.
Today I saw that my chest x-ray has improved: a little less cotton candy in the lung area. Though I was truly troubled by what I suspect was my breast tissue that looked well, less then, um...pert. I kept that to myself though.
George believes- still- that this is bleo toxicity, rearing it's incredibly ugly head- a year later. And the way he explained it all was like this: "Your body is attacking itself." Like I don't have enough problems...Apparently once this crap enters your system, it sort of re-codes your immune system. And in some patients this means that it all needs to be calmed down- through the use of steroids, essentially- until my immune system starts to read the tea leaves correctly. This could take a year. This could take a life time. But, well I didn't really have all that much going on any way, right?
And ultimately it all comes down to a guessing game. And for the next, oh 12 months or so, we'll be messing around with more pharmaceuticals until we find the sweet spot between drug dosages AND keeping my lungs happy and health. In other words, I'm going to be seeing a lot of George.
I suspect that to be a good thing, since I am rather fond of him- no, not in that way. Duh!
And, I also learned a few other things. On the horizon, we're a little concerned with diabetes- as apparently prolonged, high doses of this stuff can cause one to get "the sugars." That would certainly explain my thirst issue...And, apparently there's a small possibility that I have TB, btw. Small because I don't fit the "profile" and small because I haven't been hanging out in Asia very much lately.
(Editors note: George just called. I'm TB and diabetes free. And apparently I am to eat more bananas.)
So, phew! Because seriously, I have shit to do and too many shoes to wear to be quarantined.
And on that note, I just returned from seeing my awesome lung guy, George.
I'm two weeks post lung biopsy. Two weeks on crazy steroids. And well life, seems to be ok. Sure, I'm not sleeping- at all. I AM a little bit crabby. And well, I am super thirsty. But I am able to get up, shower and put on clean clothes daily. That is something to truly celebrate.
Today I saw that my chest x-ray has improved: a little less cotton candy in the lung area. Though I was truly troubled by what I suspect was my breast tissue that looked well, less then, um...pert. I kept that to myself though.
George believes- still- that this is bleo toxicity, rearing it's incredibly ugly head- a year later. And the way he explained it all was like this: "Your body is attacking itself." Like I don't have enough problems...Apparently once this crap enters your system, it sort of re-codes your immune system. And in some patients this means that it all needs to be calmed down- through the use of steroids, essentially- until my immune system starts to read the tea leaves correctly. This could take a year. This could take a life time. But, well I didn't really have all that much going on any way, right?
And ultimately it all comes down to a guessing game. And for the next, oh 12 months or so, we'll be messing around with more pharmaceuticals until we find the sweet spot between drug dosages AND keeping my lungs happy and health. In other words, I'm going to be seeing a lot of George.
I suspect that to be a good thing, since I am rather fond of him- no, not in that way. Duh!
And, I also learned a few other things. On the horizon, we're a little concerned with diabetes- as apparently prolonged, high doses of this stuff can cause one to get "the sugars." That would certainly explain my thirst issue...And, apparently there's a small possibility that I have TB, btw. Small because I don't fit the "profile" and small because I haven't been hanging out in Asia very much lately.
(Editors note: George just called. I'm TB and diabetes free. And apparently I am to eat more bananas.)
So, phew! Because seriously, I have shit to do and too many shoes to wear to be quarantined.
Monday, October 7, 2013
CANCER: We don't know what is wrong with you
Today marked my latest 90 day return to my cancer review team. I met with both the well dressed Dr. Tanya Wahl and the very kind, Dr. James Spiegel. Now, because I am special like that, they both met with me TOGETHER.
And let me tell you something, there is nothing both frustrating and wonderful as seeing two of your favorite doctors, standing shoulder to shoulder, and admitting they have no clue what in the hell is wrong. It's wonderful because it saves me the pain of making a second appointment, only to hear the same information. So, let's hear it for saving time. It's frustrating because they cannot help me. And, well they went to medical school- not me. I reminded them of that fact a couple of times just to bring it all home....
But, the facts are these: I'm on a lot of steroids- ALOT. The upside is that I have enough energy to put up with people, inhale and exhale, and due to the fact I cannot sleep, I've come up with at least 10 ways to end the Federal shut down. In other words, I am using my time wisely. Oh, and my boobs got big- again.
The downside is that well, steroids are tough on my body. I take a zillion years to taper off this mess. And, I still don't feel great.
The conclusion to all of this is as follows: I'll either get better or worse. And, based on that information, we can then decide how to best proceed.
So, we wait.
Cancer taught me a lot about being a patient patient. I am so zen, man...I could teach a Buddhist a thing or two. I go back to Dr. George on 10/17- where more will be revealed through my umpteenth chest x-ray. And then we will proceed as necessary.
Stay tuned. And, if you need your house painted in the middle of the night, gimme a call. And John Boehner...seriously...You're a rookie.
And let me tell you something, there is nothing both frustrating and wonderful as seeing two of your favorite doctors, standing shoulder to shoulder, and admitting they have no clue what in the hell is wrong. It's wonderful because it saves me the pain of making a second appointment, only to hear the same information. So, let's hear it for saving time. It's frustrating because they cannot help me. And, well they went to medical school- not me. I reminded them of that fact a couple of times just to bring it all home....
But, the facts are these: I'm on a lot of steroids- ALOT. The upside is that I have enough energy to put up with people, inhale and exhale, and due to the fact I cannot sleep, I've come up with at least 10 ways to end the Federal shut down. In other words, I am using my time wisely. Oh, and my boobs got big- again.
The downside is that well, steroids are tough on my body. I take a zillion years to taper off this mess. And, I still don't feel great.
The conclusion to all of this is as follows: I'll either get better or worse. And, based on that information, we can then decide how to best proceed.
So, we wait.
Cancer taught me a lot about being a patient patient. I am so zen, man...I could teach a Buddhist a thing or two. I go back to Dr. George on 10/17- where more will be revealed through my umpteenth chest x-ray. And then we will proceed as necessary.
Stay tuned. And, if you need your house painted in the middle of the night, gimme a call. And John Boehner...seriously...You're a rookie.
Friday, October 4, 2013
CANCER: And the winner is...
George Peter Pappas.
That's right- the lung man was right on the money. I have "chemically induced" lung damage.
MOTHERF*CKER
Ok, while not one to gloat in his Armani suit, I couldn't help but notice a small hint of "I told you so" when he gave me the results this morning. It's ok. I deserved it.
What this means is no damn pneumonia. (I swear to JESUS they will kill a bitch in the ER.) No more poo inducing antibiotics. (I am SOOO gonna miss that.) And welcome back steroids: 40 mg of prednisone daily for the next 14 days.
As you may recall, the human body produces 5 mg of cortisol- the same stuff as prednisone, on a daily basis. And, I am now overriding my system with 8 times my daily average. This means the following: restlessness, sleeplessness, increase in appetite, weight gain, "moon face", complete crazy, angry bitch behavior (You've been warned.) oh, and a decrease in my lung inflammation. (YAY??)
The nutty part about all of this is I already had this stupid chemically induced side effect. And well, it's not supposed to come back. EVER. But, no, no, no. Lucky little- well soon to be big- girl, that I am, I get it- again.
I asked the benevolent, GPP just what the future has in store for me. And, well since he was riding pretty high he responded kinda like that creepy mall Santa with the: "Now, there, there. Let's just get through the next two weeks."
Unfortunately, I think he's gonna have to visit me in prison, as I am certain my behavior will land there.
Tail firmly tucked between my legs, I am so humbled by all that is George Peter Pappas.
Mea culpa, dammit.
That's right- the lung man was right on the money. I have "chemically induced" lung damage.
MOTHERF*CKER
Ok, while not one to gloat in his Armani suit, I couldn't help but notice a small hint of "I told you so" when he gave me the results this morning. It's ok. I deserved it.
What this means is no damn pneumonia. (I swear to JESUS they will kill a bitch in the ER.) No more poo inducing antibiotics. (I am SOOO gonna miss that.) And welcome back steroids: 40 mg of prednisone daily for the next 14 days.
As you may recall, the human body produces 5 mg of cortisol- the same stuff as prednisone, on a daily basis. And, I am now overriding my system with 8 times my daily average. This means the following: restlessness, sleeplessness, increase in appetite, weight gain, "moon face", complete crazy, angry bitch behavior (You've been warned.) oh, and a decrease in my lung inflammation. (YAY??)
The nutty part about all of this is I already had this stupid chemically induced side effect. And well, it's not supposed to come back. EVER. But, no, no, no. Lucky little- well soon to be big- girl, that I am, I get it- again.
I asked the benevolent, GPP just what the future has in store for me. And, well since he was riding pretty high he responded kinda like that creepy mall Santa with the: "Now, there, there. Let's just get through the next two weeks."
Unfortunately, I think he's gonna have to visit me in prison, as I am certain my behavior will land there.
Tail firmly tucked between my legs, I am so humbled by all that is George Peter Pappas.
Mea culpa, dammit.
Tuesday, October 1, 2013
CANCER: Post Mortem
Ok, OK, OK, I KNOW...I left information up in the air about the door option. And, well I apologize for that. But, see I have a really great excuse: I got really sick. Again.
To quickly answer the door question: It was a trick question. It was none other than Door#4: Do nothing but schedule a lung biopsy.
Basically my oncologist, the dynamic, and impeccably dressed Dr. Wahl called it an "infection." And the equally awesome Dr. George Pappas called it a recurrence of last year's bleo toxicity. Dr W called BS (but in a totally nice way) on that and well, Dr. P "stood his ground."
All the while I'm like: "Man, I hate it when my parents fight."
The deal is this: If Dr. P is wrong but treats me with steroids, it will suppress my immune system and allow the lung infection to wage holy Hell in my lungs. And if Dr. W is wrong, the antibiotics will also delay care, and well my lungs get jacked up too.
Because I have a little skin in this game, I weighed in- and suggested an alternative: more research. And, really why not take that approach? I was only a little tired, right? So Team Moy all agreed that I will undergo a lung biopsy this Wednesday at 3:30 PM at Swedish, Seattle.
Ha! When will I ever learn? Never, apparently.
On Sunday, while attempting to keep up with the St. Therese Shades of Praise gospel choir, I realized: "Holy shit, I cannot breathe." So I ended up sitting down for most of mass. And, I just kept going downhill from there.
On Monday I woke up feeling like there was a baby elephant sitting on my chest. And, well I DO like elephants. I just don't like them in that setting. I called Dr. P's office and was directed by his surly nurse, Jennifer (Yes, honey I AM going to throw yer ass under the bus!!! Just you wait!) to go directly to the ER.
Oh come now. You know me better than that. While not one to panic, I did shower, shave, get the boys ready for school and out the door on time. Meanwhile, I am praying I don't freakin' pass out in front of them. I gently, yet firmly kicked them out of the car, blew the requisite kisses and made my way to Swedish, Seattle.
And if there was ever a moment in my life when I wished I lived on the east side, it was yesterday. After being treated like veal at Swedish Issaquah- what with the private ER exam rooms, flat screen T.V.'s, hot, yet dumb doctors, I was surprised by the apparent worm hole I fell through in the Swedish Seattle ER.
Holy SHIT! What a dump that place is.
Of course, I was really, really, really sick. So, I did what any normal sick person would do: I parked my car in the ER ambulance drive-up. I looked for the valet I could blithely toss my keys to- and SURPRISE! No one was there. Too sick to care, I left it there and calibrated for what was lying ahead. I instructed the nurse with the following:
1) I can't breathe.
2) Yes, that's my car in the ambulance space.
3) Someone will need to move it.
Then I sat my ass down.
They rushed me back into a treatment bay- yes, a bay like some shit you see in a BARN. I was separated by a curtain from a 20 year old, Seattle U student who was in for pericarditis, brought on, probably by the strep throat he contracted from the woman he's been seeing. He hadn't had "intimate relations" with anyone in the past 4-6 months. He's a veteran- and the woman who brought him in, was Chelsea, his roommate- not his girlfriend. Well, she's a "girl" and a "friend" but you get my meaning.
He was sentenced to two days in the hospital for intensive IV antibiotic drugs. And apparently pericarditis is not a big deal- at least according to the med tech working on him. Right....Now my advice to this dude, if I had the energy was as follows:
1) Dump strep throat girl, NOW.
2) Marry Chelsea- any woman you can puke in front of- TWICE- and she's still standing is a keeper!
3) Call your mother.
Meanwhile, I was ordered to undergo a chest x-ray ("Um, do you have any experience with this type of test?") and then a contrast CT. While waiting, I overheard on the staff walkie-talkies: Yes, you read that right: walkie-talkies, like we're in the damn Boy Scouts of America, that the ER toilet was backed up. And every staffer- and I mean EVERY staffer, replied, in unison, out loud: "Yeah. Don't use it." The Hell????
And did I mention I had no cell service?
The X-ray room looked like it was used by Mme Curie herself and the CT machine looked like it was re-purposed from the yard of Sanford and Son. And well I just held on for dear life.
Tests completed, as I was being wheeled back to my "bay" I passed by on old, skinny biker dude, screaming into his phone(He had cell service???)that his guts were bursting through his hernia- and "just what in the Hell" did they plan on doing to fix it?
You know, that shit just doesn't happen in Issaquah.
It was at that point when I decided I had had enough. I fell asleep. Only to be awakened by my ER doctor who informed me that I didn't have any of the "yucky or scary stuff" and then walked out of the room. "Boy, that's a relief,"I thought....my diagnosis is "non-specific un-yucky or scary stuff."
Turns out, this same ER doc called it pneumonia. (And, I'm calling bullshit.) And apparently pneumonia, even the made up kind, is neither "yucky nor scary" in his professional estimation. I was then tethered up to another IV machine and watched the very powerful antibiotics drip into my vein.
During that hour long wait, I got a new guest in the bay next to me: a 238 LB, MS patient. Age 61. And I did not know this, but if you SHOUT REALLY LOUDLY at MS patients, they hear you better. I encourage all of you to try it out for yourselves and let me know the outcome. The couldn't really figure out why this dude was in the ER and did more poking and prodding. Turns out, they thought he had the FLU; just what an immune compromised cancer survivor needs to be sitting next to.
Suffice it to say, I couldn't WAIT to get the hell outta there. And, trust me- they kicked me out like the rest of those drug seekers in that neighborhood. I arrived at the parking garage where I learned I had to pay $14 to get my car out. Really.
But at least I had cell service. And now I know exactly where to go when I get the flu.
I still feel like Hell. I am going to do the biopsy. And hopefully neither "yucky" or "scary" will reveal itself tomorrow.
Stay tuned!
To quickly answer the door question: It was a trick question. It was none other than Door#4: Do nothing but schedule a lung biopsy.
Basically my oncologist, the dynamic, and impeccably dressed Dr. Wahl called it an "infection." And the equally awesome Dr. George Pappas called it a recurrence of last year's bleo toxicity. Dr W called BS (but in a totally nice way) on that and well, Dr. P "stood his ground."
All the while I'm like: "Man, I hate it when my parents fight."
The deal is this: If Dr. P is wrong but treats me with steroids, it will suppress my immune system and allow the lung infection to wage holy Hell in my lungs. And if Dr. W is wrong, the antibiotics will also delay care, and well my lungs get jacked up too.
Because I have a little skin in this game, I weighed in- and suggested an alternative: more research. And, really why not take that approach? I was only a little tired, right? So Team Moy all agreed that I will undergo a lung biopsy this Wednesday at 3:30 PM at Swedish, Seattle.
Ha! When will I ever learn? Never, apparently.
On Sunday, while attempting to keep up with the St. Therese Shades of Praise gospel choir, I realized: "Holy shit, I cannot breathe." So I ended up sitting down for most of mass. And, I just kept going downhill from there.
On Monday I woke up feeling like there was a baby elephant sitting on my chest. And, well I DO like elephants. I just don't like them in that setting. I called Dr. P's office and was directed by his surly nurse, Jennifer (Yes, honey I AM going to throw yer ass under the bus!!! Just you wait!) to go directly to the ER.
Oh come now. You know me better than that. While not one to panic, I did shower, shave, get the boys ready for school and out the door on time. Meanwhile, I am praying I don't freakin' pass out in front of them. I gently, yet firmly kicked them out of the car, blew the requisite kisses and made my way to Swedish, Seattle.
And if there was ever a moment in my life when I wished I lived on the east side, it was yesterday. After being treated like veal at Swedish Issaquah- what with the private ER exam rooms, flat screen T.V.'s, hot, yet dumb doctors, I was surprised by the apparent worm hole I fell through in the Swedish Seattle ER.
Holy SHIT! What a dump that place is.
Of course, I was really, really, really sick. So, I did what any normal sick person would do: I parked my car in the ER ambulance drive-up. I looked for the valet I could blithely toss my keys to- and SURPRISE! No one was there. Too sick to care, I left it there and calibrated for what was lying ahead. I instructed the nurse with the following:
1) I can't breathe.
2) Yes, that's my car in the ambulance space.
3) Someone will need to move it.
Then I sat my ass down.
They rushed me back into a treatment bay- yes, a bay like some shit you see in a BARN. I was separated by a curtain from a 20 year old, Seattle U student who was in for pericarditis, brought on, probably by the strep throat he contracted from the woman he's been seeing. He hadn't had "intimate relations" with anyone in the past 4-6 months. He's a veteran- and the woman who brought him in, was Chelsea, his roommate- not his girlfriend. Well, she's a "girl" and a "friend" but you get my meaning.
He was sentenced to two days in the hospital for intensive IV antibiotic drugs. And apparently pericarditis is not a big deal- at least according to the med tech working on him. Right....Now my advice to this dude, if I had the energy was as follows:
1) Dump strep throat girl, NOW.
2) Marry Chelsea- any woman you can puke in front of- TWICE- and she's still standing is a keeper!
3) Call your mother.
Meanwhile, I was ordered to undergo a chest x-ray ("Um, do you have any experience with this type of test?") and then a contrast CT. While waiting, I overheard on the staff walkie-talkies: Yes, you read that right: walkie-talkies, like we're in the damn Boy Scouts of America, that the ER toilet was backed up. And every staffer- and I mean EVERY staffer, replied, in unison, out loud: "Yeah. Don't use it." The Hell????
And did I mention I had no cell service?
The X-ray room looked like it was used by Mme Curie herself and the CT machine looked like it was re-purposed from the yard of Sanford and Son. And well I just held on for dear life.
Tests completed, as I was being wheeled back to my "bay" I passed by on old, skinny biker dude, screaming into his phone(He had cell service???)that his guts were bursting through his hernia- and "just what in the Hell" did they plan on doing to fix it?
You know, that shit just doesn't happen in Issaquah.
It was at that point when I decided I had had enough. I fell asleep. Only to be awakened by my ER doctor who informed me that I didn't have any of the "yucky or scary stuff" and then walked out of the room. "Boy, that's a relief,"I thought....my diagnosis is "non-specific un-yucky or scary stuff."
Turns out, this same ER doc called it pneumonia. (And, I'm calling bullshit.) And apparently pneumonia, even the made up kind, is neither "yucky nor scary" in his professional estimation. I was then tethered up to another IV machine and watched the very powerful antibiotics drip into my vein.
During that hour long wait, I got a new guest in the bay next to me: a 238 LB, MS patient. Age 61. And I did not know this, but if you SHOUT REALLY LOUDLY at MS patients, they hear you better. I encourage all of you to try it out for yourselves and let me know the outcome. The couldn't really figure out why this dude was in the ER and did more poking and prodding. Turns out, they thought he had the FLU; just what an immune compromised cancer survivor needs to be sitting next to.
Suffice it to say, I couldn't WAIT to get the hell outta there. And, trust me- they kicked me out like the rest of those drug seekers in that neighborhood. I arrived at the parking garage where I learned I had to pay $14 to get my car out. Really.
But at least I had cell service. And now I know exactly where to go when I get the flu.
I still feel like Hell. I am going to do the biopsy. And hopefully neither "yucky" or "scary" will reveal itself tomorrow.
Stay tuned!
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