Alrighty- so, I've been keeping my head down nice and low, taking my prednisone like a BOSS, getting X-rays like my ass works for Mme. Curie, and here's what I now know: I am indeed a delicate creature.
That's right. DELICATE CREATURE. (A term coined by none other than Anthony Maroudas.)
And here's why- thanks to the year-long use of steroids, according to some dude named Paul Farris, I have "multilevel thoracic and upper lumbar degenerative changes." Paul also goes on to state that "faint residual left lower lung zone opacity persists; significant interval improvement; right hemothorax clear." Thanks, Paul. Way to keep it professional...
Good Dr. George Pappas also sent me a letter by mail- (really, George? I thought we were friends....) informing me that I have low bone mass and that I am to take calcium and vitamin D.
What I don't know is what exactly all of this means.
Ok, I know what opacity means- I do wear tights, after all. So, I just applied that concept to my lungs. Some gunk is still in there that makes them unclear. However, the fashion bug in me keeps seeing my left lower lung zone swathed in purple tights...Don't ask me why.
And low bone density- well that has me stumped. Truly. I mean I know what all the words, strung together mean. But, what I don't know is how low is low? And does this mean that my spine will look like Swiss cheese in a couple of years? If that's a possibility, then DANG! I really like my spine and being able to walk, and shit like that. So I'd really like to keep that going for as long as possible. However, I keep having these images of me all hunched over, wearing awful Velcro shoes, pushing a walker, while wearing polyester pants with an elastic waistband. I mean, Christian Louboutin isn't known for making kitten heels...
Of course, this is me just being all paranoid. However, I will continue to swear by the fact that I enjoy looking nice. And cancer, cancer treatment, recovery, etc has been a major challenge and threat to that which matters to me greatest: that I look nice. I mean, dang! My hair is starting to grow back- and with a major attitude, I might add- like some vendetta seeking Sicilian...WTH???
And, well where would I be without my friends? That's right- if it weren't for my friend Fabrizio, who shouted, demanded, insisted (that's how the Italians talk...) that I get a bone density scan, I would have no clue what's going on. So, thanks Fabrizio. You deserve a huge hug and kiss.
Also, Fabrizio insisted that I get an endocrinologist on the team. Why? Well, the prednisone shut down my adrenal glands (Google it.) And they didn't come back online the last time I was taken off of steroids. This poses a huge problem, as at that time I was sleeping about 16 - 17 hours a day, drooling like a total bleary-eyed spazz, and just really doing everything in my power to keep one foot in front of the other. And well, we know how that ended up working out for me.
So, I chatted George up at our last meeting. And, you gotta love the doctor who is so humble that he actually slapped his forehead in that "Oh, I should have had a V-8" fashion and said: "Of course. I know just the right person for you to work with." So, he hooked me up with Dr. Frances Broyles, with whom I had the most interesting phone conversation. Dr. Broyles will step in once I taper down to 10 MGS of steroids. Then she will bring in her roots, berries and other potions to cast her magic spell on me- all in an attempt to get me to better health.
And that's that.
On a related note, this week I met a very, very interesting woman. She was diagnosed with breast cancer. Decided to undergo a lumpectomy, but turned down the recommended chemo and radiation. Her reasons were that the outcomes for her diagnosis just didn't outweigh the crappy side effects of treatment. She figures she's got another 7 - 10 years of good living and, well if it's her time, then it's her time. She plans to monitor things and will make adjustments as she see fits.
And in many ways, I envy her. While I truly disagree with her decision, I do really envy her. As I reflected on my own cancer and path towards recovery, I honestly asked myself if I would be brave enough to make that choice- turn it all down and walk way? And while I realize just how different breast cancer is from Hodgkin's Lymphoma, still I can't help but wonder.
Now, look- I decided to seek treatment, damn the consequences, because of my kids. And, yes I hate the fact that I am still dealing with so much crap from the treatment. But last night, when both of my boys climbed into bed to snuggle in for their nightly ritual, I thought to myself, "Self, this shit was totally worthy it."
Friday, November 22, 2013
Wednesday, October 30, 2013
CANCER: Your Opinion Matters
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.
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.
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!
Tuesday, September 24, 2013
CANCER: Summer is OVE-AHHHH!
I promised, solemnly swore, that I would update this silly blog once summer concluded. I was given a bit of a pass, as I tend to view it- with my 90 day intervals between "just a little poke" and "drink this magic potion so we can see your insides..." For those of you still with me, thanks! I appreciate it.
However, as the calendar promised, summer is over. It is time for Autumn. And that also means my 90 days of blissed out, no cancer thinking, feeling, etc are over.
Maybe you wonder how my summer went? Well, if so, I'll tell you. It was so relaxing. And honestly I LOVED every minute of it. It did suck however when anyone asked me things like: "Wow! Do you remember what the weather was like last summer?" and "My tomatoes are doing so much better than last summer. Remember?" I would stare numbly and just do my best "I don't have a clue whatchu talkin' 'bout" shrug. Did I feel stupid? Yep. But I'll take that over chemo side-effects any time- and every time. And dear readers, I hope your summer was just as nice- hell, even nicer. I can afford to be generous.
So, that takes us to present day. Yesterday marked the beginning of the end. I rolled up to Swedish Issaquah for my 90 day CT exam. Unfortunately they "forgot" to tell me to drink that nasty ass dye contrast. However, they were so kind about this omission that they kindly offered me their waiting area, a straw and two gallons of dye contrast to drink. And, drink it I did- all without protest. See? Cancer DID make me a better person.
And while I was there, I went ahead and had my blood drawn. I figured it wise to get this out of the way too, as for the past three weeks I have been feeling like shit. And I don't mean a little bit. I mean ALOT. It has gotten to the point that I'm not really eating and I am sleeping ALL THE TIME. The upside to this is that as a middle-aged woman, I relish the ability to get good shut-eye. But, also as middle-aged woman, I know when there is simply too much of a good thing. And, I am certainly in that zone.
While at Swedish, I ran into all my favorite team players, including the very awesome Nurse Debbie. I lerv her. Really, I do. We caught up. She asked me what I was doing there. And I bitched: "Man! I feel like shit. What in the HELL did they DO to me?" She replied: "Well, at least you aren't being treated for cancer." And I got the solemnity of that statement, as I was standing on my old stomping grounds- the chemo room. Hair all grown in, keeping food down, like a BOSS...And around me, well other people weren't so lucky. Count yer blessings, I say...Oh, don't get me wrong. I still whined. And, well, she listened.
I ended up back at Swedish today, because while all of my blood work shows I'm still mercifully cancer free...It did show that I have some sort of "inflammation." I love it when the medical jargon is so specific and shit. Just LOVE it.
I landed on the doorstep of my other favorite MD, Dr. Phillip Capp. And seriously, I have a deep, deep, almost borderline unhealthy passion for this dude. For starters, he's male, young, and somehow, I just KNOW that he's got a washboard stomach under his scrubs. Just say the word Dr...Just say the WORD! Secondly, he does his homework. He rolls in, charts read, and is breaking stuff down in a way that you wish EVERY MD would. I never have to repeat myself. And he never wastes my time.
Unfortunately, he caught me by surprise, as apparently my scans came back with some "lesions" on my lungs. Dang! Well, it explains that my fatigue isn't some manufactured madness that would send me to some back alley to mainline Ritalin...
Dr. Capp readily admitted that he didn't know what they are from. Could be this, could be that. Could be- but most probably isn't- more cancer.
Say what?
Now look. I'm a pro at getting this type of news. Seriously; I'm so good, I'm trying to turn it into a paid gig. "Call me. I'll handle your bad medical news for you..." But even as remote as the possibility is, nothing stops me in my tracks faster than that dreaded word: cancer. Ugh! That shit sucks. It really, really does.
So, here's where I'm at: I kicked the hornet's nest, as I was instructed to do. And now it is time to wait for the "team" to review all this crap and get back to me. Yes, it probably isn't cancer. Though, on the advice of my sage 11 y.o. I decided not to grow my hair back- as cancer isn't really gonna be over for me for another 4 years...Man, he's so smart. Gets it from his mom....
And now it is time to wait. Will it be Door #1: more steroids? Door #2: Antibiotics and steroids? Or Door #3: All of the above AND chemo?
Ohhh....I can hardly wait for the results. Should hear something by Thursday.
And to paraphrase that wise sage: Lenny Kravitz: "Baby it ain't cancer, till it's cancer..." Sing it with me now...
However, as the calendar promised, summer is over. It is time for Autumn. And that also means my 90 days of blissed out, no cancer thinking, feeling, etc are over.
Maybe you wonder how my summer went? Well, if so, I'll tell you. It was so relaxing. And honestly I LOVED every minute of it. It did suck however when anyone asked me things like: "Wow! Do you remember what the weather was like last summer?" and "My tomatoes are doing so much better than last summer. Remember?" I would stare numbly and just do my best "I don't have a clue whatchu talkin' 'bout" shrug. Did I feel stupid? Yep. But I'll take that over chemo side-effects any time- and every time. And dear readers, I hope your summer was just as nice- hell, even nicer. I can afford to be generous.
So, that takes us to present day. Yesterday marked the beginning of the end. I rolled up to Swedish Issaquah for my 90 day CT exam. Unfortunately they "forgot" to tell me to drink that nasty ass dye contrast. However, they were so kind about this omission that they kindly offered me their waiting area, a straw and two gallons of dye contrast to drink. And, drink it I did- all without protest. See? Cancer DID make me a better person.
And while I was there, I went ahead and had my blood drawn. I figured it wise to get this out of the way too, as for the past three weeks I have been feeling like shit. And I don't mean a little bit. I mean ALOT. It has gotten to the point that I'm not really eating and I am sleeping ALL THE TIME. The upside to this is that as a middle-aged woman, I relish the ability to get good shut-eye. But, also as middle-aged woman, I know when there is simply too much of a good thing. And, I am certainly in that zone.
While at Swedish, I ran into all my favorite team players, including the very awesome Nurse Debbie. I lerv her. Really, I do. We caught up. She asked me what I was doing there. And I bitched: "Man! I feel like shit. What in the HELL did they DO to me?" She replied: "Well, at least you aren't being treated for cancer." And I got the solemnity of that statement, as I was standing on my old stomping grounds- the chemo room. Hair all grown in, keeping food down, like a BOSS...And around me, well other people weren't so lucky. Count yer blessings, I say...Oh, don't get me wrong. I still whined. And, well, she listened.
I ended up back at Swedish today, because while all of my blood work shows I'm still mercifully cancer free...It did show that I have some sort of "inflammation." I love it when the medical jargon is so specific and shit. Just LOVE it.
I landed on the doorstep of my other favorite MD, Dr. Phillip Capp. And seriously, I have a deep, deep, almost borderline unhealthy passion for this dude. For starters, he's male, young, and somehow, I just KNOW that he's got a washboard stomach under his scrubs. Just say the word Dr...Just say the WORD! Secondly, he does his homework. He rolls in, charts read, and is breaking stuff down in a way that you wish EVERY MD would. I never have to repeat myself. And he never wastes my time.
Unfortunately, he caught me by surprise, as apparently my scans came back with some "lesions" on my lungs. Dang! Well, it explains that my fatigue isn't some manufactured madness that would send me to some back alley to mainline Ritalin...
Dr. Capp readily admitted that he didn't know what they are from. Could be this, could be that. Could be- but most probably isn't- more cancer.
Say what?
Now look. I'm a pro at getting this type of news. Seriously; I'm so good, I'm trying to turn it into a paid gig. "Call me. I'll handle your bad medical news for you..." But even as remote as the possibility is, nothing stops me in my tracks faster than that dreaded word: cancer. Ugh! That shit sucks. It really, really does.
So, here's where I'm at: I kicked the hornet's nest, as I was instructed to do. And now it is time to wait for the "team" to review all this crap and get back to me. Yes, it probably isn't cancer. Though, on the advice of my sage 11 y.o. I decided not to grow my hair back- as cancer isn't really gonna be over for me for another 4 years...Man, he's so smart. Gets it from his mom....
And now it is time to wait. Will it be Door #1: more steroids? Door #2: Antibiotics and steroids? Or Door #3: All of the above AND chemo?
Ohhh....I can hardly wait for the results. Should hear something by Thursday.
And to paraphrase that wise sage: Lenny Kravitz: "Baby it ain't cancer, till it's cancer..." Sing it with me now...
Wednesday, August 7, 2013
CANCER: I have WHAT?
Carpal Tunnel...
What the HELL?
When I last left you, I had parked myself on the doorstep of non-other than Denis Leary look a like, Dr. Lawrence Murphy. And this is where I pick it back up.
Today I underwent a slightly uncomfortable nerve study. Yes, I was electrocuted (only slightly) and also poked with some crazy electronic needle that Dr. Murphy SWEARS was sterile and only used on me. Thank GOD I'm not Russian. Otherwise I probably would have run outta that office screaming my head off at that...(And really? small poke my ass.) And from all that shocking and sticking, he uncovered that I have carpal tunnel in both my hands.
Color me disbelieving. "Uh-uh", was my response to that diagnosis. (I know...I sound so educated in these appointments, don't I?) However, Dr. Murphy in his un-Leary-like patience told me that basically, I got it. He also readily admits that while this is only one diagnosis, it may not completely answer what is going on with everything else. So, I look at it like this: This is either the cause OR I have just one more stupid thing to contend with.
On the one hand (ha-ha!) I kinda do hope it is carpal tunnel, because that shit goes away over time- all without the aid of medication. And, the good Dr. M prescribed some OT to help me out.
On the other hand, my left arm is still swollen and my left boob hurts- like: been-dragged-around-on-hot-pavement-by-the-nipple, kind of hurt. And somehow, while I didn't go to medical school, I suspect it's not carpal tunnel of the boob. Just sayin'. And besides how on earth would I get THAT? Overuse of my boob? Really? At this time, their role is pretty limited to entertainment activities and fitting in my clothes. Though, what that left one does while I'm asleep is a mystery...
At the end of my appointment, I found myself face-to-face with the lovely "Patient Care Coordinator" with the wicked sense of humor: Shawntel Roberts, MA. In nano-seconds, she had me laughing - AGAIN and getting my dumb ass scheduled for OT ("No see, OT isn't PT. PT is where you gotta bend and do stuff like that.") I swear to GOD she needs a pay increase. I'll see who I can talk to about that...
Even though we laughed, we still managed to get our "work" done. I'm scheduled for my first OT appointment on September 23. I know...that's a million years from now. However, since I'm not a big believer in the diagnosis, I figured what's the rush to find out no matter how much squeezing of clay or some other substance, my left arm will remain swollen and my boob will still feel like it is on fire?
Seriously.
Now tomorrow is another story all together- for that is the day I go see the voodoo witch doctors over at that "alternative healing" place- Bastyr. The plan is to meet up with one of their specialists to find out what sorta roots, berries, chakra alignment and interpretive dance I should be incorporating into my life to boost the ol immune system. It kinda took a beating with all that cancer business. And well, I get sick. Often. And it lasts far too long for my comfort level.
I can already tell this is gonna be a unique experience as this appointment is scheduled to take two hours. All I can say is I really hope to Hell I like this Dr. Hibbs fellow. That's a lot of time for me to spend with anyone these days.
And well, like or dislike, I'll be sure to share that experience with you soon.
What the HELL?
When I last left you, I had parked myself on the doorstep of non-other than Denis Leary look a like, Dr. Lawrence Murphy. And this is where I pick it back up.
Today I underwent a slightly uncomfortable nerve study. Yes, I was electrocuted (only slightly) and also poked with some crazy electronic needle that Dr. Murphy SWEARS was sterile and only used on me. Thank GOD I'm not Russian. Otherwise I probably would have run outta that office screaming my head off at that...(And really? small poke my ass.) And from all that shocking and sticking, he uncovered that I have carpal tunnel in both my hands.
Color me disbelieving. "Uh-uh", was my response to that diagnosis. (I know...I sound so educated in these appointments, don't I?) However, Dr. Murphy in his un-Leary-like patience told me that basically, I got it. He also readily admits that while this is only one diagnosis, it may not completely answer what is going on with everything else. So, I look at it like this: This is either the cause OR I have just one more stupid thing to contend with.
On the one hand (ha-ha!) I kinda do hope it is carpal tunnel, because that shit goes away over time- all without the aid of medication. And, the good Dr. M prescribed some OT to help me out.
On the other hand, my left arm is still swollen and my left boob hurts- like: been-dragged-around-on-hot-pavement-by-the-nipple, kind of hurt. And somehow, while I didn't go to medical school, I suspect it's not carpal tunnel of the boob. Just sayin'. And besides how on earth would I get THAT? Overuse of my boob? Really? At this time, their role is pretty limited to entertainment activities and fitting in my clothes. Though, what that left one does while I'm asleep is a mystery...
At the end of my appointment, I found myself face-to-face with the lovely "Patient Care Coordinator" with the wicked sense of humor: Shawntel Roberts, MA. In nano-seconds, she had me laughing - AGAIN and getting my dumb ass scheduled for OT ("No see, OT isn't PT. PT is where you gotta bend and do stuff like that.") I swear to GOD she needs a pay increase. I'll see who I can talk to about that...
Even though we laughed, we still managed to get our "work" done. I'm scheduled for my first OT appointment on September 23. I know...that's a million years from now. However, since I'm not a big believer in the diagnosis, I figured what's the rush to find out no matter how much squeezing of clay or some other substance, my left arm will remain swollen and my boob will still feel like it is on fire?
Seriously.
Now tomorrow is another story all together- for that is the day I go see the voodoo witch doctors over at that "alternative healing" place- Bastyr. The plan is to meet up with one of their specialists to find out what sorta roots, berries, chakra alignment and interpretive dance I should be incorporating into my life to boost the ol immune system. It kinda took a beating with all that cancer business. And well, I get sick. Often. And it lasts far too long for my comfort level.
I can already tell this is gonna be a unique experience as this appointment is scheduled to take two hours. All I can say is I really hope to Hell I like this Dr. Hibbs fellow. That's a lot of time for me to spend with anyone these days.
And well, like or dislike, I'll be sure to share that experience with you soon.
Wednesday, July 17, 2013
CANCER: You've got some nerve....
While this blog isn't about cancer per se, as I don't have to deal with that madness again until September. It is about the annoying side effects from cancer treatment, as my year of recovery marches on. So feel free to stop reading if you care about cancer cells, malignancy and MRIs as this not about that...
After what can only be described as an "unsatisfactory" medical experience with neurologist Dr. Mai, I decided to not remain undeterred in my effort to find some sort of answer/reason for the ongoing, and yes, worsening nerve pain in my left arm.
Now, the awesome Dr. Wahl laid it bare for me at our last meeting when she said in her usual smarty-pants way: "Now look...I know no other doctor is gonna want to admit this, but sometimes we over radiate patients. We don't mean to do it. It just happens. We do our very, very best to minimize the impact of this stuff. But honestly, sometimes well things happen. I cannot tell you how bad this is going to get- and truthfully no one else will be able to either. What I can say is that this is going to take a LONG and I mean A LONG time to heal. Like two years or more, if at all." She also told me not to keep my hopes up about finding a humane neurologist. She seemed to imply that they are all a little bit autistic. And well, autism has its pluses, right???
Well, as much as I love me some Dr. Tanya Wahl, let's just say I was hardly well, inspired by her talk. Undeterred as always, I decided to seek out some more medical advice.
This landed me on the doorstep of none other than Dr. Lawrence D. Murphy. Now look...it took me six weeks to get in to see this man, because well, "Dr. Lawrence Murphy was recognized as a 2011 “Top Doctor” in Seattle Metropolitan magazine’s annual survey " Seriously. You can read more: http://www.swedish.org/Physicians/Lawrence-Murphy#ixzz2ZMdTjL1F
He also got a bunch of other top Doc awards last year including something like "Most Awesome Doctor in the Universe" or some crap like that. Either way, let me tell ya, he was worth the wait.
Looking like a very distant cousin of Denis Leary, he marched (strode?) in to my appointment 40 minutes late; full of apologies of course, and no swear words. I was kinda bummed about the lack of swear words. It really would have made up for the fact that while I was sitting so still for so long in the exam room the lights shut off. Stupid environmentally smart design...
But here's the thing- I've realized when a doctor is late for an appointment, it's usually because they are taking their time with other patients (or in the case of Denis Leary, messing around with his ex wife...) And I surmise that when it's my turn, they will take their time with me. Now, I'm often wrong about that part. But just like I keep thinking "there's the RIGHT guy out there, somewhere for me..." I hold on to this notion too. And, today it paid off in spades!
Dr. M immediately launched into a very, very thorough exam. He did many of the same things as Dr. Mai. Except, well he took a lot longer, asked a ton more questions and triple checked his measurements. And from all of his poking and prodding, I learned that my left arm, which is non-dominate is 2 cm's larger than my right. This proves that the weird swelling wasn't a figment of my overactive imagination; and, more importantly neither is the pain.
The conclusion the very articulate, sane and non-swearing Dr. Murphy drew was that there has been some "trauma" to my brachial plexus due to "scatter" from the very radiation treatment I underwent to keep me cancer free. Scatter? That word makes me think of animal droppings...
Now that we have a better sense of what is going on, I asked him a very basic, simple question: "So, how am I supposed to live my life now?" Good news! The trauma/pain usually peaks around six months post onset (I'm at month seven...) And that I can do anything I want to do physically until it hurts too much to do so. Golf? Yes. Tennis? Yes. Yoga in the park? YES! The swelling is from lymphedema. He recommends that I wear my sexy lymphatic sleeve on a daily basis-(or until it impacts my tan line while out golfing...) to keep stuff under control. He's also going to conduct a nerve study on my arm to find out how things are firing up and down my arm.
Now it wasn't all brass bands and parades...He did tell me that while he doesn't believe my arm will not become paralyzed, he did state that nerves take FOREVER to heal. He gave me a year before I begin to see the pain get better- if ever. That's right, I may have pain for the rest of my life. And, well I can't decide if there's some sort of message in that. Like, maybe I should eat better or change my religion??? I mean, a lifetime of pain? Really? Oh well. I'll decide that crap later.
But wait, it gets even better. I needed to meet up with his scheduler, whose name I cannot remember for the life of me. However, I will say this: all the black women in Seattle work as receptionists in Swedish Issaquah's neurology office. Seriously. I mean, I have been getting treatment there for over a year. And besides my brownish self, I NEVER see black people there. EVER. Now I know where they are: Dr. Murphy's office.
Anywho- the amazing receptionist is the funniest woman I have had the pleasure of laughing with. Muttering behind her computer screen, she threw out the date of August 5 for my follow-up/nerve conduction study. Now, I am still rocking the mind altering gabapentin, so I cannot remember shit. I stated: "August 3rd. What day of the week is that?" She muttered back, "Saturday." I was all: "Saturday? He works on Saturdays?" She said: "Naw girl. He doesn't work on Saturdays, but you are MORE than welcome to come on in by yourself and do your OWN study." Dear GOD! Just the levity I needed. I busted out laughing. And it was in that moment that I realized just how long I had been holding my breath.
You know, I should have known she was one funny lady when I saw a photocopied photograph of her husband (ex?) with a black eye and devil horns drawn on him with the words: "Wanted dead or alive" written along the bottom.
Now that is some shit you just DON'T see everyday in your neurologists office. She has alotta nerve. And well on AUGUST 7TH, I'll find out more about mine...
After what can only be described as an "unsatisfactory" medical experience with neurologist Dr. Mai, I decided to not remain undeterred in my effort to find some sort of answer/reason for the ongoing, and yes, worsening nerve pain in my left arm.
Now, the awesome Dr. Wahl laid it bare for me at our last meeting when she said in her usual smarty-pants way: "Now look...I know no other doctor is gonna want to admit this, but sometimes we over radiate patients. We don't mean to do it. It just happens. We do our very, very best to minimize the impact of this stuff. But honestly, sometimes well things happen. I cannot tell you how bad this is going to get- and truthfully no one else will be able to either. What I can say is that this is going to take a LONG and I mean A LONG time to heal. Like two years or more, if at all." She also told me not to keep my hopes up about finding a humane neurologist. She seemed to imply that they are all a little bit autistic. And well, autism has its pluses, right???
Well, as much as I love me some Dr. Tanya Wahl, let's just say I was hardly well, inspired by her talk. Undeterred as always, I decided to seek out some more medical advice.
This landed me on the doorstep of none other than Dr. Lawrence D. Murphy. Now look...it took me six weeks to get in to see this man, because well, "Dr. Lawrence Murphy was recognized as a 2011 “Top Doctor” in Seattle Metropolitan magazine’s annual survey " Seriously. You can read more: http://www.swedish.org/Physicians/Lawrence-Murphy#ixzz2ZMdTjL1F
He also got a bunch of other top Doc awards last year including something like "Most Awesome Doctor in the Universe" or some crap like that. Either way, let me tell ya, he was worth the wait.
Looking like a very distant cousin of Denis Leary, he marched (strode?) in to my appointment 40 minutes late; full of apologies of course, and no swear words. I was kinda bummed about the lack of swear words. It really would have made up for the fact that while I was sitting so still for so long in the exam room the lights shut off. Stupid environmentally smart design...
But here's the thing- I've realized when a doctor is late for an appointment, it's usually because they are taking their time with other patients (or in the case of Denis Leary, messing around with his ex wife...) And I surmise that when it's my turn, they will take their time with me. Now, I'm often wrong about that part. But just like I keep thinking "there's the RIGHT guy out there, somewhere for me..." I hold on to this notion too. And, today it paid off in spades!
Dr. M immediately launched into a very, very thorough exam. He did many of the same things as Dr. Mai. Except, well he took a lot longer, asked a ton more questions and triple checked his measurements. And from all of his poking and prodding, I learned that my left arm, which is non-dominate is 2 cm's larger than my right. This proves that the weird swelling wasn't a figment of my overactive imagination; and, more importantly neither is the pain.
The conclusion the very articulate, sane and non-swearing Dr. Murphy drew was that there has been some "trauma" to my brachial plexus due to "scatter" from the very radiation treatment I underwent to keep me cancer free. Scatter? That word makes me think of animal droppings...
Now that we have a better sense of what is going on, I asked him a very basic, simple question: "So, how am I supposed to live my life now?" Good news! The trauma/pain usually peaks around six months post onset (I'm at month seven...) And that I can do anything I want to do physically until it hurts too much to do so. Golf? Yes. Tennis? Yes. Yoga in the park? YES! The swelling is from lymphedema. He recommends that I wear my sexy lymphatic sleeve on a daily basis-(or until it impacts my tan line while out golfing...) to keep stuff under control. He's also going to conduct a nerve study on my arm to find out how things are firing up and down my arm.
Now it wasn't all brass bands and parades...He did tell me that while he doesn't believe my arm will not become paralyzed, he did state that nerves take FOREVER to heal. He gave me a year before I begin to see the pain get better- if ever. That's right, I may have pain for the rest of my life. And, well I can't decide if there's some sort of message in that. Like, maybe I should eat better or change my religion??? I mean, a lifetime of pain? Really? Oh well. I'll decide that crap later.
But wait, it gets even better. I needed to meet up with his scheduler, whose name I cannot remember for the life of me. However, I will say this: all the black women in Seattle work as receptionists in Swedish Issaquah's neurology office. Seriously. I mean, I have been getting treatment there for over a year. And besides my brownish self, I NEVER see black people there. EVER. Now I know where they are: Dr. Murphy's office.
Anywho- the amazing receptionist is the funniest woman I have had the pleasure of laughing with. Muttering behind her computer screen, she threw out the date of August 5 for my follow-up/nerve conduction study. Now, I am still rocking the mind altering gabapentin, so I cannot remember shit. I stated: "August 3rd. What day of the week is that?" She muttered back, "Saturday." I was all: "Saturday? He works on Saturdays?" She said: "Naw girl. He doesn't work on Saturdays, but you are MORE than welcome to come on in by yourself and do your OWN study." Dear GOD! Just the levity I needed. I busted out laughing. And it was in that moment that I realized just how long I had been holding my breath.
You know, I should have known she was one funny lady when I saw a photocopied photograph of her husband (ex?) with a black eye and devil horns drawn on him with the words: "Wanted dead or alive" written along the bottom.
Now that is some shit you just DON'T see everyday in your neurologists office. She has alotta nerve. And well on AUGUST 7TH, I'll find out more about mine...
Monday, June 17, 2013
CANCER: I KNOW what you did last summer.....
Sigh! Where to begin??? So much has transpired since my last entry...I think I'll start with the most recent stuff and work my way backward...I trust that somehow this will all make sense in the end...
So today I saw the good Drs. Wahl and Spiegel, as it was my second 90 day post-treatment check-up. And honestly, I couldn't be more pleased. Blood work pending, things look free and clear and I'm good for the next 90 days...However, while waiting for my appointment, a woman stared at me- like that's so strange???- and told me she "loved" my skin color. Now, in the past when that has been said to me, it has been followed up with a lick to my upper forearm. I swear to GOD! (happened more than once- from different people, I might add....) Fortunately, this woman kept her wits about her, remained seated, and followed up with: "No seriously; how is it that your skin is so tan?" Well, the obvious answer is: "Ummm, DNA? My parents???" But since we were in the cancer office, I figured it best to throw her a bone. I replied: "I was at the beach in St. Martin." (That's right, I thought to myself, celebrating the very fact that my ass doesn't have cancer.) We started to chat a bit about vacation, the sun, etc....I threw in just how different my life and skin are now compared to what I was doing this time last summer....Her name was called. And that's when the realization sunk in....ugh! She's going back to the chemo room for treatment. She's where I was LAST summer. UGH! I was her. She is me. Fucking cancer.
I guess this cancer business does have some sort of silver lining though- as last week, on behalf of Gilda's Club, I got to prance my way down the runway decked out in nothing but the finest Seattle designer Elizabeth Roberts, had to offer. And, well let me just say a few things about the experience. I was taken aback by just how much fun I had. I mean, sure...it's fashion....I love clothes and looking great...but I tend to keep that kind of joy hidden away and private, as I live in Seattle. We take inordinate amounts of pride in wearing some of the ugliest shit known to human kind....(really, Target lady in the socky shoe things??? On what planet is that even remotely attractive?) I felt like I looked wonderful. And, more importantly, the other cancer survivors out on that runway felt beautiful, handsome, sexy, etc too!....Man was that nice to be around. Really! Also, I got to use a sentence that in no way I ever imagined ever using in my lifetime. I missed a call from my sick kid from school. Ugh! But, when I called him back, I had to tell him: "Man, I'm sorry I missed your call. I was on the catwalk and didn't have my phone on me..." Amazing...and it only took cancer to get me THERE.
Also, about ten days ago I was placed on the most extraordinary drug by none other than the very capable and truly loveable, Dr. George Peter Pappas. Now, I was there to see him for my lung follow-up. (Nailed it at 107% capacity! Suck it, bleomyicin toxicity!) Dr. Pappas takes what I call a "holistic" approach with me. Some others might call it "nosy." Instead of gabbing about my lungs, he starts in on the whole "So, how's exercising working out for you??" I really didn't want to reply, because truthfully, the answer was: N/A. And, more importantly a BIG part of why that was the reply had to do with my ongoing, unresolved and utterly frustrating and stupid arm/nerve pain.
Now, I spent my last Gilda's Club session BAWLING my eyes out over this shit. (Turns out, I'm not made outta steel after all...) And really, that was an effective use of tears. Because I mourned the pain, the frustration and then, magically just accepted it as all part of my new normal. Now, here I was two days later, being forced to dredge all this crap up again with Dr. P. I was annoyed- but not in a bad way....Finally, after trying to escape his probing questions, I finally just confessed: "Man...I'm not doing a damn thing because my arm hurts and the only pain remediation that has been offered so far are narcotics and I hate those things because I'm unable to solo parent my kids or take a crap." There. I said it.
Dr. P gave me that gentle look and said: "Well now...that's ridiculous as there's all kinds of great drugs out there to help you with the pain. And really maybe all you need is some time get this inflammation under control to allow you to get back in the game." And that's when he unlocked me from my torture chamber and ordered a drug called Gabapentin. Honestly, it's like freakin' Stockholm Syndrome, the love I have for this man....
The first day on this drug rendered me pain free...but high as a kite- and I have to say, I've remained pain free (sleeping like a stone!)- yet stoned out of my freakin' mind for the past ten days. Other people define the experience as feeling "loopy." Not me. I'm stoned- out-of-my-mind. And, I'm not even sure how I'm writing this blog. Jesus....I may look at this thing in a month and wonder just what in the HELL was going through my mind.
Well, today Dr. Wahl offered me a solution- by LOWERING the dosage. Phew!
So, there you have it. High as a kite- yet freer from pain- and more importantly, free from cancer- well, at least for the next 90 days or if the blood work says otherwise....
I fully acknowledge just what last summer held for me. Even with the love and support I received from so many, it still sucked. And, well THIS summer, I am going to kick back, keep laughing my ass off, and enjoy my reprieve from all that is CANCER!
Don't worry! I'll be back at it again....in 90 days....
So today I saw the good Drs. Wahl and Spiegel, as it was my second 90 day post-treatment check-up. And honestly, I couldn't be more pleased. Blood work pending, things look free and clear and I'm good for the next 90 days...However, while waiting for my appointment, a woman stared at me- like that's so strange???- and told me she "loved" my skin color. Now, in the past when that has been said to me, it has been followed up with a lick to my upper forearm. I swear to GOD! (happened more than once- from different people, I might add....) Fortunately, this woman kept her wits about her, remained seated, and followed up with: "No seriously; how is it that your skin is so tan?" Well, the obvious answer is: "Ummm, DNA? My parents???" But since we were in the cancer office, I figured it best to throw her a bone. I replied: "I was at the beach in St. Martin." (That's right, I thought to myself, celebrating the very fact that my ass doesn't have cancer.) We started to chat a bit about vacation, the sun, etc....I threw in just how different my life and skin are now compared to what I was doing this time last summer....Her name was called. And that's when the realization sunk in....ugh! She's going back to the chemo room for treatment. She's where I was LAST summer. UGH! I was her. She is me. Fucking cancer.
I guess this cancer business does have some sort of silver lining though- as last week, on behalf of Gilda's Club, I got to prance my way down the runway decked out in nothing but the finest Seattle designer Elizabeth Roberts, had to offer. And, well let me just say a few things about the experience. I was taken aback by just how much fun I had. I mean, sure...it's fashion....I love clothes and looking great...but I tend to keep that kind of joy hidden away and private, as I live in Seattle. We take inordinate amounts of pride in wearing some of the ugliest shit known to human kind....(really, Target lady in the socky shoe things??? On what planet is that even remotely attractive?) I felt like I looked wonderful. And, more importantly, the other cancer survivors out on that runway felt beautiful, handsome, sexy, etc too!....Man was that nice to be around. Really! Also, I got to use a sentence that in no way I ever imagined ever using in my lifetime. I missed a call from my sick kid from school. Ugh! But, when I called him back, I had to tell him: "Man, I'm sorry I missed your call. I was on the catwalk and didn't have my phone on me..." Amazing...and it only took cancer to get me THERE.
Also, about ten days ago I was placed on the most extraordinary drug by none other than the very capable and truly loveable, Dr. George Peter Pappas. Now, I was there to see him for my lung follow-up. (Nailed it at 107% capacity! Suck it, bleomyicin toxicity!) Dr. Pappas takes what I call a "holistic" approach with me. Some others might call it "nosy." Instead of gabbing about my lungs, he starts in on the whole "So, how's exercising working out for you??" I really didn't want to reply, because truthfully, the answer was: N/A. And, more importantly a BIG part of why that was the reply had to do with my ongoing, unresolved and utterly frustrating and stupid arm/nerve pain.
Now, I spent my last Gilda's Club session BAWLING my eyes out over this shit. (Turns out, I'm not made outta steel after all...) And really, that was an effective use of tears. Because I mourned the pain, the frustration and then, magically just accepted it as all part of my new normal. Now, here I was two days later, being forced to dredge all this crap up again with Dr. P. I was annoyed- but not in a bad way....Finally, after trying to escape his probing questions, I finally just confessed: "Man...I'm not doing a damn thing because my arm hurts and the only pain remediation that has been offered so far are narcotics and I hate those things because I'm unable to solo parent my kids or take a crap." There. I said it.
Dr. P gave me that gentle look and said: "Well now...that's ridiculous as there's all kinds of great drugs out there to help you with the pain. And really maybe all you need is some time get this inflammation under control to allow you to get back in the game." And that's when he unlocked me from my torture chamber and ordered a drug called Gabapentin. Honestly, it's like freakin' Stockholm Syndrome, the love I have for this man....
The first day on this drug rendered me pain free...but high as a kite- and I have to say, I've remained pain free (sleeping like a stone!)- yet stoned out of my freakin' mind for the past ten days. Other people define the experience as feeling "loopy." Not me. I'm stoned- out-of-my-mind. And, I'm not even sure how I'm writing this blog. Jesus....I may look at this thing in a month and wonder just what in the HELL was going through my mind.
Well, today Dr. Wahl offered me a solution- by LOWERING the dosage. Phew!
So, there you have it. High as a kite- yet freer from pain- and more importantly, free from cancer- well, at least for the next 90 days or if the blood work says otherwise....
I fully acknowledge just what last summer held for me. Even with the love and support I received from so many, it still sucked. And, well THIS summer, I am going to kick back, keep laughing my ass off, and enjoy my reprieve from all that is CANCER!
Don't worry! I'll be back at it again....in 90 days....
Friday, May 31, 2013
CANCER: If the diagnosis fits....
"It fits. I like it." He said to me....
Now, what is running through your mind? Me? When I read something like that I want to say: "That's what she said..." And then chuckle. Though lately chuckles are the last thing on my mind or in my heart. I know...shitty way to start off isn't it?
Well, let me take you back to the beginning. Today, I met with a surgeon, one Dr. Brian Lang. This was to serve as the follow-up to my neurologist Dr. Ani Mai's suggestion/referral to see him due to the MRA diagnosis of subclavian vein stenosis- or, clogged or compressed vein.
Now Dr. Lang is a surgeon of the vascular variety. Very experienced, well education (GO DAWGS!), and I cannot lie, kinda nice looking....I wanted, no I NEEDED to like him, trust him, right away; because this meeting, I believed, held the answer, the fix to what is wrong. Seriously. I envisioned the white OR, the anesthesia creeping into my veins, putting me to sleep. I saw myself in that groggy state of trying to wake up, with Dr. Lang peering over me, saying everything went better than expected. I would be all better. The pain and swelling would be gone forever.....
Instead what I got was a 45 minute seminar on how to read an MRA. I learned all about the vena cava (one of my favorite words in the English language, BTW) and symmetry, blood flow, arteries, you name it....I also learned that in his professional opinion and many years of experience, that while, yes I have some jacked up clogged/compressed veins, there was nothing at all he could do for me. NOTHING. And, really- he doesn't think this is a vein issue. Wrong store. Go fish....
Unflinchingly, I stated to him: "Well, I'm not sure what to do at this point. I mean, a nurse told me that I have radiation induced brachial plexiopathy."
He replied with what I wrote above. It fits, you see this paralysis diagnosis from the nurse. And, well he liked it.
Cue the tears.....
Now, I have brothers and I've been around enough men to know just how squirrely the fairer sex gets when tough broads break down. However, a trained professional who cavalierly and cockily gives someone a diagnosis of life-time paralysis should have the stones to well, take it like a man, for crying out loud.
Instead, he turned even whiter than his God-given hue, starts babbling about updating my chart and ran, YES, RAN out of the room.
Where did that leave me? Alone in a room, for starters... And, well, I sucked down the tears- because really, what was the point? First, I called my mom. "Yay! It's STILL not cancer...."And, then I phoned my gay Jewish boyfriend in New York, who replied: "What a dumbass. Get a second opinion." Yes, I can do that! I almost forgot! (HOPE!) And then called my best friend Patty Mate who replied: "Oh my GOD, get a second opinion and be sure to write him up on a comment card." (AH! Power!)
How come a second opinion never occurred to me? I have no clue. Instead, what came to mind was my Nordstrom mentality of simply returning it all. Just take it back; the cancer, the cure, the side effects, the test, the "just a little poke"... Fuck it. Nope, don't have the receipt. But, don't want it anymore. And, well, the store's policy is to accept all returns- no questions asked, right?
Though if pushed for a reason, I guess I could always say: "Well, it doesn't fit and I don't like it."
Now, what is running through your mind? Me? When I read something like that I want to say: "That's what she said..." And then chuckle. Though lately chuckles are the last thing on my mind or in my heart. I know...shitty way to start off isn't it?
Well, let me take you back to the beginning. Today, I met with a surgeon, one Dr. Brian Lang. This was to serve as the follow-up to my neurologist Dr. Ani Mai's suggestion/referral to see him due to the MRA diagnosis of subclavian vein stenosis- or, clogged or compressed vein.
Now Dr. Lang is a surgeon of the vascular variety. Very experienced, well education (GO DAWGS!), and I cannot lie, kinda nice looking....I wanted, no I NEEDED to like him, trust him, right away; because this meeting, I believed, held the answer, the fix to what is wrong. Seriously. I envisioned the white OR, the anesthesia creeping into my veins, putting me to sleep. I saw myself in that groggy state of trying to wake up, with Dr. Lang peering over me, saying everything went better than expected. I would be all better. The pain and swelling would be gone forever.....
Instead what I got was a 45 minute seminar on how to read an MRA. I learned all about the vena cava (one of my favorite words in the English language, BTW) and symmetry, blood flow, arteries, you name it....I also learned that in his professional opinion and many years of experience, that while, yes I have some jacked up clogged/compressed veins, there was nothing at all he could do for me. NOTHING. And, really- he doesn't think this is a vein issue. Wrong store. Go fish....
Unflinchingly, I stated to him: "Well, I'm not sure what to do at this point. I mean, a nurse told me that I have radiation induced brachial plexiopathy."
He replied with what I wrote above. It fits, you see this paralysis diagnosis from the nurse. And, well he liked it.
Cue the tears.....
Now, I have brothers and I've been around enough men to know just how squirrely the fairer sex gets when tough broads break down. However, a trained professional who cavalierly and cockily gives someone a diagnosis of life-time paralysis should have the stones to well, take it like a man, for crying out loud.
Instead, he turned even whiter than his God-given hue, starts babbling about updating my chart and ran, YES, RAN out of the room.
Where did that leave me? Alone in a room, for starters... And, well, I sucked down the tears- because really, what was the point? First, I called my mom. "Yay! It's STILL not cancer...."And, then I phoned my gay Jewish boyfriend in New York, who replied: "What a dumbass. Get a second opinion." Yes, I can do that! I almost forgot! (HOPE!) And then called my best friend Patty Mate who replied: "Oh my GOD, get a second opinion and be sure to write him up on a comment card." (AH! Power!)
How come a second opinion never occurred to me? I have no clue. Instead, what came to mind was my Nordstrom mentality of simply returning it all. Just take it back; the cancer, the cure, the side effects, the test, the "just a little poke"... Fuck it. Nope, don't have the receipt. But, don't want it anymore. And, well, the store's policy is to accept all returns- no questions asked, right?
Though if pushed for a reason, I guess I could always say: "Well, it doesn't fit and I don't like it."
Tuesday, May 28, 2013
CANCER: Unremarkable me....
May 17, 2013 fell on a Friday. And, May 17, 2012 fell on a Thursday.
Though, let's compare and contrast the two dates:
2013, I woke up, showered, kissed my mom goodbye, got an MRI/MRA at Swedish Issaquah and then hopped a NYC bound plane....hung out on the isle of Manhattan and then took off for St. Martin for a full week of bikini clad, rest and relaxation....
2012- I am fairly certain I woke up and showered. I also headed over to Swedish Issaquah- with my mom in tow....and watched my blood pressure hover in the area of heart attack vicinity, as I was plugged in for my very first chemo treatment.
I know...Which two things are NOT like the other?
In 2012, I was working on the whole "trying to stay alive" thing. Whereas in 2013, like Inspector Clouseau I am trying to figure out just what event in 2012 caused my left arm to swell and left hand to hurt like it is on fire....
Now, you know ALL about the messed up, over the phone, shitty diagnosis about my arm dying. And, today you are going to find out that according to this year's test "it appears that there is an area of narrowing involving the subclavian vein that may be accounting for the arm swelling.....the segmental stenosis or occlusion of the proximal subclavian vein is over a distance of about 2.2 cm." Also, "The MRI of the bundle of nerves around the armpit area was fine." And my "bones are unremarkable."
Now, narrowing of the subclavian vein, I can understand....segmental stenosis, I get too. But I draw the line at unremarkable bones. You can say all kinds of stuff about me. But, there is nothing, I repeat nothing, unremarkable about me. I am gonna have to speak to management about editing that document to accurately reflect the character of my bones. Trust me when I tell you- they are remarkable.
Ok- all kidding aside, just what in the hell does all of this mean? Well, Dr. Ani Mai- lady of few words, sent me an email stating: "I'd like to send you to a vascular surgeon to take a look at it." And after reading all of this foolishness, I wanted to reply: "Dr. Mai, I would like to send you to the moon..."
I refrained.
So, here's where it's at: Thanks to the remarkable cancer treatments that saved my very life, I have the veins of an 80 year old smoker who apparently has eaten bacon at every meal for the past 60 years. And, the end result is I gotta go talk to a surgeon. And we all know what that means: I'm probably gonna be put under, cut open, have something removed, and maybe something put in its place- as an outpatient procedure. And maybe, just maybe if I'm lucky, get put on some drug that all of my parents' 70 year old friends are taking, for the rest of my life.
If I'm right, I swear to GOD- I am never, ever gonna exercise again. And I'm gonna stuff my face full of beautiful donuts. And my soul will be calm as cool water just knowing despite what the doctor's say, I have remarkable bones.
Next up: Friday's 10:00 AM appointment with poor unsuspecting vascular surgeon, Dr. Lang.....
Though, let's compare and contrast the two dates:
2013, I woke up, showered, kissed my mom goodbye, got an MRI/MRA at Swedish Issaquah and then hopped a NYC bound plane....hung out on the isle of Manhattan and then took off for St. Martin for a full week of bikini clad, rest and relaxation....
2012- I am fairly certain I woke up and showered. I also headed over to Swedish Issaquah- with my mom in tow....and watched my blood pressure hover in the area of heart attack vicinity, as I was plugged in for my very first chemo treatment.
I know...Which two things are NOT like the other?
In 2012, I was working on the whole "trying to stay alive" thing. Whereas in 2013, like Inspector Clouseau I am trying to figure out just what event in 2012 caused my left arm to swell and left hand to hurt like it is on fire....
Now, you know ALL about the messed up, over the phone, shitty diagnosis about my arm dying. And, today you are going to find out that according to this year's test "it appears that there is an area of narrowing involving the subclavian vein that may be accounting for the arm swelling.....the segmental stenosis or occlusion of the proximal subclavian vein is over a distance of about 2.2 cm." Also, "The MRI of the bundle of nerves around the armpit area was fine." And my "bones are unremarkable."
Now, narrowing of the subclavian vein, I can understand....segmental stenosis, I get too. But I draw the line at unremarkable bones. You can say all kinds of stuff about me. But, there is nothing, I repeat nothing, unremarkable about me. I am gonna have to speak to management about editing that document to accurately reflect the character of my bones. Trust me when I tell you- they are remarkable.
Ok- all kidding aside, just what in the hell does all of this mean? Well, Dr. Ani Mai- lady of few words, sent me an email stating: "I'd like to send you to a vascular surgeon to take a look at it." And after reading all of this foolishness, I wanted to reply: "Dr. Mai, I would like to send you to the moon..."
I refrained.
So, here's where it's at: Thanks to the remarkable cancer treatments that saved my very life, I have the veins of an 80 year old smoker who apparently has eaten bacon at every meal for the past 60 years. And, the end result is I gotta go talk to a surgeon. And we all know what that means: I'm probably gonna be put under, cut open, have something removed, and maybe something put in its place- as an outpatient procedure. And maybe, just maybe if I'm lucky, get put on some drug that all of my parents' 70 year old friends are taking, for the rest of my life.
If I'm right, I swear to GOD- I am never, ever gonna exercise again. And I'm gonna stuff my face full of beautiful donuts. And my soul will be calm as cool water just knowing despite what the doctor's say, I have remarkable bones.
Next up: Friday's 10:00 AM appointment with poor unsuspecting vascular surgeon, Dr. Lang.....
Tuesday, May 14, 2013
CANCER: Where it's at....
Hello Gentle Readers-
Sorry it has been a few weeks since my last post. I wanted things to quiet down a little bit, as I needed to observe the passing of the one year anniversary of my cancer diagnosis. And you know, I just wasn't sure how to note it. My usual "go to" of shoe shopping really didn't fit the bill. And well, without that, I was at a loss.
So, I did the next best thing. I shut the hell up and just let it pass. My therapist is a big proponent of "being in the moment." So, I churned up a little bit of that and well...here I am.
Where it's at is this: after a few weeks of B vitamins and probiotics, I am truly feeling better. My left hand still freaks me out, what with the nutty nerve pain and arm swelling. But, I just brought on the very silent neurologist, Dr. Mai. She sure didn't say much during my appointment with her. But boy did she take COPIUS notes. Thanks for that Dr. Mai. I sure as Hell hope she reads 'em....This Friday, I am scheduled to make a special guest appearance at Swedish Issaquah and undergo about 2 hours of testing. Now I know what you're asking: What kinda tests? And the answer is simple- I have no idea. And, even better, I don't really know what she's looking for or even what diagnosis is even on the table. What I DO know is that she finds my case "puzzling." Like that's something new for me....Apparently the sexy combo of arm swelling and nerve pain are really uncommon.
But, you know what? I don't care. You wanna know why? Ok, I'll share: I'm heading outta the country for a week of sun, relaxation and serious love in St. Maarten. Now, before I continue, just dash the notion of Stella getting her groove back. The love I'm referring to is from my dearest, sincerest pal: gay, Jewish boyfriend, Robert and his partner Chris. And, after the ass kicking I've taken on the health and personal fronts, I fear I'm gonna spend the week on those white pristine beaches just crying my eyes out- from being so overwhelmed by all the GOOD.
Yes, the three bikinis are packed along with sunscreen (wouldn't want to get cancer...) and I step on that plane Friday afternoon- before anyone can crash my joy with some shitty diagnosis- and hang out for ten whole days. Away from the hospitals, doctors and tube like medical equipment.
Ok, maybe my souvenir from the Caribbean won't be some luscious, sweet young thing, looking for a green card---that's right, I said MAYBE....instead I am hoping for some peace of mind and being blissfully ignorant of what lies ahead for me.
BLISSFULLY IGNORANT by choice. I highly recommend it.
Sorry it has been a few weeks since my last post. I wanted things to quiet down a little bit, as I needed to observe the passing of the one year anniversary of my cancer diagnosis. And you know, I just wasn't sure how to note it. My usual "go to" of shoe shopping really didn't fit the bill. And well, without that, I was at a loss.
So, I did the next best thing. I shut the hell up and just let it pass. My therapist is a big proponent of "being in the moment." So, I churned up a little bit of that and well...here I am.
Where it's at is this: after a few weeks of B vitamins and probiotics, I am truly feeling better. My left hand still freaks me out, what with the nutty nerve pain and arm swelling. But, I just brought on the very silent neurologist, Dr. Mai. She sure didn't say much during my appointment with her. But boy did she take COPIUS notes. Thanks for that Dr. Mai. I sure as Hell hope she reads 'em....This Friday, I am scheduled to make a special guest appearance at Swedish Issaquah and undergo about 2 hours of testing. Now I know what you're asking: What kinda tests? And the answer is simple- I have no idea. And, even better, I don't really know what she's looking for or even what diagnosis is even on the table. What I DO know is that she finds my case "puzzling." Like that's something new for me....Apparently the sexy combo of arm swelling and nerve pain are really uncommon.
But, you know what? I don't care. You wanna know why? Ok, I'll share: I'm heading outta the country for a week of sun, relaxation and serious love in St. Maarten. Now, before I continue, just dash the notion of Stella getting her groove back. The love I'm referring to is from my dearest, sincerest pal: gay, Jewish boyfriend, Robert and his partner Chris. And, after the ass kicking I've taken on the health and personal fronts, I fear I'm gonna spend the week on those white pristine beaches just crying my eyes out- from being so overwhelmed by all the GOOD.
Yes, the three bikinis are packed along with sunscreen (wouldn't want to get cancer...) and I step on that plane Friday afternoon- before anyone can crash my joy with some shitty diagnosis- and hang out for ten whole days. Away from the hospitals, doctors and tube like medical equipment.
Ok, maybe my souvenir from the Caribbean won't be some luscious, sweet young thing, looking for a green card---that's right, I said MAYBE....instead I am hoping for some peace of mind and being blissfully ignorant of what lies ahead for me.
BLISSFULLY IGNORANT by choice. I highly recommend it.
Friday, April 26, 2013
CANCER: Turns out it was just a....
.....blob of tissue that is not, I say, is NOT cancer. Apparently my little "spot" moves and squishes when pushed. I think the boob doctor said something like "pliable"....I have no idea. She used all kindsa fancy doctor talk while explaining what she was looking at on the screen. I think she even stated: "Well, what we're looking for is whether the tissue has "metabolized." I stopped her finally and said: "You mean, turned into cancer?" And she replied: "Yes, something like that." Well, alright Miss Fancy Pants. Just speak plain ol English, as I skipped class the day they were teaching about the metabolic process associated with tumor growth.....
So, YAY!
But there's a few more things to celebrate today, and I'll share them right here, right now.
1) Ranking super high on my list of awesome stuff: I got a free smoked chicken. Not gonna go into the details, as those are boring. Suffice it to say, the Café at Swedish Issaquah is on the gourmet level. And one of their staffers has a little crush on me. That translated into me getting a free bird- no, not the song.....My mom tells me I still "got it." I guess what she means is I'm in line to receive more free chicken??
2) I met the infamous Seattle designer, Elizabeth Roberts. Let me tell you about this lady. She's FIERCE and has a vision and esthetic that blows my mind. I LOVED meeting her and her terrific staff. As much as I detest trying clothes on in the middle of the day, I had no trouble stripping down to my undies to try on the goods in her studio. What a blast! I was Cancer Survivor Barbie- but with a much, much bigger ass. And seriously folks, I almost fainted when she asked me about shoes. Why? Well, I'm a shoe whore. However, she asked me (ASKED?) if I was alright wearing Balenciaga. I was like: "Well, if I have to slum...." Suffice it to say, she drops names of designers like I talk about produce at my local food cooperative. Damn! I'm in LOVE!
3) I hung out with some pretty awesome colleagues and kick ass Director of West Coast Operations, Patty. It's nice to have friends. Thanks guys for making the trek to my hood!
4) I don't have boob cancer.
I don't think I can top that, do you?
So, YAY!
But there's a few more things to celebrate today, and I'll share them right here, right now.
1) Ranking super high on my list of awesome stuff: I got a free smoked chicken. Not gonna go into the details, as those are boring. Suffice it to say, the Café at Swedish Issaquah is on the gourmet level. And one of their staffers has a little crush on me. That translated into me getting a free bird- no, not the song.....My mom tells me I still "got it." I guess what she means is I'm in line to receive more free chicken??
2) I met the infamous Seattle designer, Elizabeth Roberts. Let me tell you about this lady. She's FIERCE and has a vision and esthetic that blows my mind. I LOVED meeting her and her terrific staff. As much as I detest trying clothes on in the middle of the day, I had no trouble stripping down to my undies to try on the goods in her studio. What a blast! I was Cancer Survivor Barbie- but with a much, much bigger ass. And seriously folks, I almost fainted when she asked me about shoes. Why? Well, I'm a shoe whore. However, she asked me (ASKED?) if I was alright wearing Balenciaga. I was like: "Well, if I have to slum...." Suffice it to say, she drops names of designers like I talk about produce at my local food cooperative. Damn! I'm in LOVE!
3) I hung out with some pretty awesome colleagues and kick ass Director of West Coast Operations, Patty. It's nice to have friends. Thanks guys for making the trek to my hood!
4) I don't have boob cancer.
I don't think I can top that, do you?
Tuesday, April 23, 2013
CANCER: Are you done yet?
My dad is a really, really great man. He is my favorite hero. And like all heroes, he too has a weakness. His personal kryptonite is, well impatience. Now, the 2.0 version of my dad, since retirement, is very different from when he was running a construction company. He's much more laid back. He's funny. And well he is getting better at this whole patience business.
But, when he was off being a titan of business and a major bad-ass, he would say things to me like, while out to dinner: "No, take your time with your dinner. I can wait." Followed up, two minutes later with: "So, ya done yet?"
Now, why am I writing about my dad, when I'm supposed to be blabbing on about cancer? Well, I'll tell you. Yesterday, I met with Leslie Vietmeier, ARNP-BC at the Seattle Cancer Care Alliance's Survivorship Clinic. There, we spent about two hours going over my cancer treatment and talking about both the long-term and late-term effects of my treatment. Nothing too surprising emerged from that conversation, truthfully- except maybe that I need to lean on my newly appointed primary care, MD for stuff like annual echocardiograms and DEXA bone scans. But, seriously not much more than that. She also wrote me a script for a lymphatic sleeve to help with this mysterious arm swelling business.
What she did tell me that I really, really appreciated though was the following: Chemo really, really wreaks havoc on your insides- down to the micronutrient level. She stated that I would probably have another 6 months to a year before I get back to well, 98%- because, as she warned me "With what you've been through, you may never get to 100%." Dang! But, alright. It's still an A, right?
I thanked her profusely for her help. It was the best use of two hours to date. Now, here's why. When I see my awesome oncology team, I get a bit of a mixed message. They say: "Oh, it's totally normal to feel tired and worn out." Followed up with: "What? You're still tired? It's getting better though, right?" Talk about pressure! I finally learned to just accept that there's some strange duplicity around this business of healing. I also learned how to say: "Well, you asked me how I feel. This is how I feel." Fuck normal.
Now Leslie, she confirmed my physical challenges. She stated that chemo (post treatment) allows people to appear on the outside all healthy and normal. But, she said on the inside, my organs and stuff are FREAKING the FUCK out. Ok, those weren't her exact words. I paraphrased....forgive me. She suggested some nutrients and vitamin supplements that I can use to help coax my insides into getting better (B12, B6, probiotics) However, she said the bottom line is this stuff takes time. And that IS normal. More importantly, she welcomed me to the new team of survivorship. I thanked her again. I told her that a year ago, I was given the label "unfavorable." And that was a tough road to hoe. It's gonna take a minute before I can fully move into "Team Survivor" mode.
So, to answer both my dad and my docs, Nope- I'm not done yet; almost though. I'm getting there....
PS- Yesterday, along with Leslie, I added another member into my survivorship team- Kelly, the business mind behind Seattle designer, Elizabeth Roberts' shop. Ms. Roberts is tasked with designing something amazing to make me beautiful for the June 13, Gilda's Club annual Surviving in Style luncheon. Not a bad person to have in the line-up.....
But, when he was off being a titan of business and a major bad-ass, he would say things to me like, while out to dinner: "No, take your time with your dinner. I can wait." Followed up, two minutes later with: "So, ya done yet?"
Now, why am I writing about my dad, when I'm supposed to be blabbing on about cancer? Well, I'll tell you. Yesterday, I met with Leslie Vietmeier, ARNP-BC at the Seattle Cancer Care Alliance's Survivorship Clinic. There, we spent about two hours going over my cancer treatment and talking about both the long-term and late-term effects of my treatment. Nothing too surprising emerged from that conversation, truthfully- except maybe that I need to lean on my newly appointed primary care, MD for stuff like annual echocardiograms and DEXA bone scans. But, seriously not much more than that. She also wrote me a script for a lymphatic sleeve to help with this mysterious arm swelling business.
What she did tell me that I really, really appreciated though was the following: Chemo really, really wreaks havoc on your insides- down to the micronutrient level. She stated that I would probably have another 6 months to a year before I get back to well, 98%- because, as she warned me "With what you've been through, you may never get to 100%." Dang! But, alright. It's still an A, right?
I thanked her profusely for her help. It was the best use of two hours to date. Now, here's why. When I see my awesome oncology team, I get a bit of a mixed message. They say: "Oh, it's totally normal to feel tired and worn out." Followed up with: "What? You're still tired? It's getting better though, right?" Talk about pressure! I finally learned to just accept that there's some strange duplicity around this business of healing. I also learned how to say: "Well, you asked me how I feel. This is how I feel." Fuck normal.
Now Leslie, she confirmed my physical challenges. She stated that chemo (post treatment) allows people to appear on the outside all healthy and normal. But, she said on the inside, my organs and stuff are FREAKING the FUCK out. Ok, those weren't her exact words. I paraphrased....forgive me. She suggested some nutrients and vitamin supplements that I can use to help coax my insides into getting better (B12, B6, probiotics) However, she said the bottom line is this stuff takes time. And that IS normal. More importantly, she welcomed me to the new team of survivorship. I thanked her again. I told her that a year ago, I was given the label "unfavorable." And that was a tough road to hoe. It's gonna take a minute before I can fully move into "Team Survivor" mode.
So, to answer both my dad and my docs, Nope- I'm not done yet; almost though. I'm getting there....
PS- Yesterday, along with Leslie, I added another member into my survivorship team- Kelly, the business mind behind Seattle designer, Elizabeth Roberts' shop. Ms. Roberts is tasked with designing something amazing to make me beautiful for the June 13, Gilda's Club annual Surviving in Style luncheon. Not a bad person to have in the line-up.....
Saturday, April 20, 2013
CANCER: Out Damn Spot. Out!
I realize that I kinda left the blog hanging what with all that talk about Radiation Induced Brachial Plexiopathy. Sorry! But, here's the deal. Sure, I blogged about it and sounded pretty sane. But, I was freaked out. No, not because I was positive that the over-the-phone, nut-job diagnosis was correct. But, actually because of fatigue and weariness. I mean....really. Before cancer, I had no idea what a brachial plexus was. And now, I am dogged with information about the many, many messed up things that can happen to body parts of which I never knew the name....So, my reaction? I buried my nose in my Kindle app, took tons of naps and fed the kids left-overs.
But I recovered. Yes, I did.
I got up the next morning breathing FIRE. I must say, it was a pretty crappy week anyway, so this was the cherry on top. My course of events included getting out of bed, showering, walking the boys to school, and upon my return, promptly calling my radiation oncologist, Dr. Spiegel and demand to be seen that very day.
It worked.
At 2:30 PM Wednesday I found myself sitting in the waiting room of the SCI in Issaquah. Sure, I tried my very best to joke along with the amazing staff. I DID! (And, Lorrie- seriously, thanks for passing on the message from the pizza guy. I promise to follow-up with him and get that free pizza.) But my heart really wasn't in it. I was annoyed, anxious, terrified, etc....
So, they walk me back to the room. Dr. S makes his grand appearance- (I really like this man!) And I lay it all out for him. His eyes become the size of dinner plates. And the first thing he does is apologize. That's right. This guy is so humble, he's cool with saying the words: "I'm sorry." And here's why: apparently the message was totally screwed up and totally incorrect. I was supposed to be told to schedule a follow-up with Dr. S. There was to be no mention of RIBP- as he's not even considering that as a possibility, as my radiation dose was half (HALF, I SAY) of the traditional amount given. But what he did say was that we needed to figure this thing out and in order to do that, he would need to rule out a cancer recurrence. Say WHAT? Cancer? Again? Seriously?
On the road to figuring this thing out, I underwent a PET CT. The PET is the one where after a 24 hour protein only diet, they inject radioactive dye into my veins and just like that, cancer cells show up. This was done at 8:00 AM, Friday. Dr. S promised he would call by the end of the day to confirm the results. I told him: "Man, you are putting yourself in a pretty shitty position, cuz you're either gonna make or break my weekend."
Friday afternoon Dr. S called, as promised. I sat down once I realized it was him- bracing myself for the outcome. Now, Dr. S could use a little work on his bedside manner because he stated: "Well, your PET CT was mostly good." Huh? Mostly? So, being me I said: "Man, what the Hell does that mean? Is my cancer back?" He stated that the lymphoma is still in sleep mode. I told him he should always LEAD with that information....However, there's a "spot" in my left breast. He doesn't believe it to be cancer. But, we still have to rule that shit out.
In order to rule that out, I need to do further tests- a diagnostic mammogram and an ultra sound. I'm lined up for those tests Friday.
The upside to these tests is there's no prep required on my part. So YAY! The downside is that the last time I had a mammogram, my left boob and arm swelled up. And while yes that is truly uncomfortable, my vain ass is more concerned about the formal, sleeveless satin gown I have to rock on Saturday night for the school auction. Such problems I have....
So there you have it. As of this moment in time, I do not have cancer. Granted, this may all change on Friday. But for now- I am cancer free!
Now, kids- do yourself a favor and listen to this old, crabby bitch. Never, ever take a medical diagnosis over the phone from anyone but your doctor. EVER. And, always, always, always pursue the truth about what is going on with your body. This is tricky business, being human.
That being said, I still have nerve pain in my left hand- kinda like how your hand feels when you come in from the cold and it starts to warm up. That nasty pins and needles thingy.....But, the swelling in my left arm is under control.
Let's hold on tight to see how things fair this coming Friday. And let's all pray to the boob gods, that somehow, some way my boob keeps it under control for its Saturday night appearance!
But I recovered. Yes, I did.
I got up the next morning breathing FIRE. I must say, it was a pretty crappy week anyway, so this was the cherry on top. My course of events included getting out of bed, showering, walking the boys to school, and upon my return, promptly calling my radiation oncologist, Dr. Spiegel and demand to be seen that very day.
It worked.
At 2:30 PM Wednesday I found myself sitting in the waiting room of the SCI in Issaquah. Sure, I tried my very best to joke along with the amazing staff. I DID! (And, Lorrie- seriously, thanks for passing on the message from the pizza guy. I promise to follow-up with him and get that free pizza.) But my heart really wasn't in it. I was annoyed, anxious, terrified, etc....
So, they walk me back to the room. Dr. S makes his grand appearance- (I really like this man!) And I lay it all out for him. His eyes become the size of dinner plates. And the first thing he does is apologize. That's right. This guy is so humble, he's cool with saying the words: "I'm sorry." And here's why: apparently the message was totally screwed up and totally incorrect. I was supposed to be told to schedule a follow-up with Dr. S. There was to be no mention of RIBP- as he's not even considering that as a possibility, as my radiation dose was half (HALF, I SAY) of the traditional amount given. But what he did say was that we needed to figure this thing out and in order to do that, he would need to rule out a cancer recurrence. Say WHAT? Cancer? Again? Seriously?
On the road to figuring this thing out, I underwent a PET CT. The PET is the one where after a 24 hour protein only diet, they inject radioactive dye into my veins and just like that, cancer cells show up. This was done at 8:00 AM, Friday. Dr. S promised he would call by the end of the day to confirm the results. I told him: "Man, you are putting yourself in a pretty shitty position, cuz you're either gonna make or break my weekend."
Friday afternoon Dr. S called, as promised. I sat down once I realized it was him- bracing myself for the outcome. Now, Dr. S could use a little work on his bedside manner because he stated: "Well, your PET CT was mostly good." Huh? Mostly? So, being me I said: "Man, what the Hell does that mean? Is my cancer back?" He stated that the lymphoma is still in sleep mode. I told him he should always LEAD with that information....However, there's a "spot" in my left breast. He doesn't believe it to be cancer. But, we still have to rule that shit out.
In order to rule that out, I need to do further tests- a diagnostic mammogram and an ultra sound. I'm lined up for those tests Friday.
The upside to these tests is there's no prep required on my part. So YAY! The downside is that the last time I had a mammogram, my left boob and arm swelled up. And while yes that is truly uncomfortable, my vain ass is more concerned about the formal, sleeveless satin gown I have to rock on Saturday night for the school auction. Such problems I have....
So there you have it. As of this moment in time, I do not have cancer. Granted, this may all change on Friday. But for now- I am cancer free!
Now, kids- do yourself a favor and listen to this old, crabby bitch. Never, ever take a medical diagnosis over the phone from anyone but your doctor. EVER. And, always, always, always pursue the truth about what is going on with your body. This is tricky business, being human.
That being said, I still have nerve pain in my left hand- kinda like how your hand feels when you come in from the cold and it starts to warm up. That nasty pins and needles thingy.....But, the swelling in my left arm is under control.
Let's hold on tight to see how things fair this coming Friday. And let's all pray to the boob gods, that somehow, some way my boob keeps it under control for its Saturday night appearance!
Wednesday, April 17, 2013
CANCER: Bad news comes in many ways....
You know, I am quickly heading into the one year mark of my cancer diagnosis. (May 1, ya'll.) and the only thing I have to say about it is that I am STILL floored by the way bad news is given to me. I tell ya, it's an art, folks.
Today, while climbing into my car, I noticed that my left arm hurt- BADLY. And it was swollen- like I could see the swelling through my gigantic, Olsen-twin inspired sweater, even....So, I did what any rational person would do. I waited to see if it would just "go away."
Now, you know I should know better than that!
So, I took it a step further. I phoned my oncologist's office and left a message with awesome nurse Sue. And, then I swallowed 200 mgs of ibuprofen. Oddly, the pain wasn't going away. But I rationalized it by thinking it felt a lot like carpal tunnel syndrome.
A couple of hours later, Nurse Sue phoned me back. She told me that according to the good Dr. Wahl, I probably had something wrong with my brachial plexus. Now if you don't know what that is, don't feel bad. Neither did I. So, I asked. She told me that the radiation treatment affected my heart (?) and that there was nerve damage. So, of course, I asked- "Um, so how long will I have this problem." She replied: "For a while." I then asked: "So, how long is a while?" She got quiet and stated- "a while." So, I said: "Now since we're taking a stab at this by phone, can you recommend some expert I can talk to who can confirm that this is actually what I have?" She said, "I'm not sure who you would need to call." Realizing I wasn't getting ANYWHERE, I just said a polite thanks and hung up the phone.
....usher in the Google search.....
Turns out, if the phone diagnosis is right, I have something called: Radiation Induced Brachial Plexopathy or RIBP for short. And, get this- it cause permanent paralysis of the arm. Now, this paralysis can take mere months to go into full effect- or even years. However, the road is straightforward. My arm and hand will swell and hurt. I will have lymphedema and more importantly, there is no cure.
I am so, so bummed. I mean, you would think I would have gotten accustomed to crappy news- break up by text? GOT IT. Nasty email? SURE! Hateful snail mail? BRING IT! Seriously. But, I find that it's just new heartbreak all over again. I think it would be helpful if some smart cancer doctor out there could figure out a way to paralyze feelings. It would really make this experience so much more tolerable.
So, what am I gonna do, you may inquire? Well, that's an easy one. For now, I am gonna use the HELL out of my left arm until it gives up the ghost. I am also going to find the right freakin' doctor, darken their doorstep, and basically haunt them until there's a cure.
Today, while climbing into my car, I noticed that my left arm hurt- BADLY. And it was swollen- like I could see the swelling through my gigantic, Olsen-twin inspired sweater, even....So, I did what any rational person would do. I waited to see if it would just "go away."
Now, you know I should know better than that!
So, I took it a step further. I phoned my oncologist's office and left a message with awesome nurse Sue. And, then I swallowed 200 mgs of ibuprofen. Oddly, the pain wasn't going away. But I rationalized it by thinking it felt a lot like carpal tunnel syndrome.
A couple of hours later, Nurse Sue phoned me back. She told me that according to the good Dr. Wahl, I probably had something wrong with my brachial plexus. Now if you don't know what that is, don't feel bad. Neither did I. So, I asked. She told me that the radiation treatment affected my heart (?) and that there was nerve damage. So, of course, I asked- "Um, so how long will I have this problem." She replied: "For a while." I then asked: "So, how long is a while?" She got quiet and stated- "a while." So, I said: "Now since we're taking a stab at this by phone, can you recommend some expert I can talk to who can confirm that this is actually what I have?" She said, "I'm not sure who you would need to call." Realizing I wasn't getting ANYWHERE, I just said a polite thanks and hung up the phone.
....usher in the Google search.....
Turns out, if the phone diagnosis is right, I have something called: Radiation Induced Brachial Plexopathy or RIBP for short. And, get this- it cause permanent paralysis of the arm. Now, this paralysis can take mere months to go into full effect- or even years. However, the road is straightforward. My arm and hand will swell and hurt. I will have lymphedema and more importantly, there is no cure.
I am so, so bummed. I mean, you would think I would have gotten accustomed to crappy news- break up by text? GOT IT. Nasty email? SURE! Hateful snail mail? BRING IT! Seriously. But, I find that it's just new heartbreak all over again. I think it would be helpful if some smart cancer doctor out there could figure out a way to paralyze feelings. It would really make this experience so much more tolerable.
So, what am I gonna do, you may inquire? Well, that's an easy one. For now, I am gonna use the HELL out of my left arm until it gives up the ghost. I am also going to find the right freakin' doctor, darken their doorstep, and basically haunt them until there's a cure.
Friday, April 12, 2013
CANCER: I will SURVIVE
Gentle Readers-
Ok- so for the past few months post treatment, I have been casting about trying like Hell to figure out how to live my life; and wondering just why, oh why my life sounds like a Gloria Gaynor song?....Yes, it is true. First I was afraid. I was petrified. But after spending oh so many nights, just thinking how cancer did me wrong, I grew strong. I learned how to get along.....
Ok- that's some serious overkill; not sure about the strong thing at all as I am still trying to sort stuff out...but getting there? Sure!
While I offer no existential insights (sorry to all you cancer supporters out there who think a cancer diagnosis makes patients benevolent....) at this time, I am writing to tell you about a new word I learned: Survivorship.
Now, for those of you well educated readers out there, perhaps this is a word with which you are familiar. However, I was educated in Catholic school in the Midwest. What with those poor teachers trying to keep us from engaging in premarital sexual activities, how on earth would they ever get around to teaching us the word survivorship?
Well, at the ripe age of 44 I learned it- yesterday. It means, (drum roll please....) the state of being a survivor. What the Hell? Such a simple word. And learning it rocked my world!
For months, I have been casting about trying to figure out just how to best describe my new state of being. No longer being treated for cancer, I am not a patient. And because of the weird rules around "remission" I can't really claim that as my status either. So, I settled on saying "I'm in recovery from cancer treatment."
I know....too many words. And out of sympathy for the poor souls who had to endure listening to that crazy phraseology, I knew I had to do better.
Ok, so survivorship gets me there. I am SURVIVING. I am in the state of surviving some nasty shit. And I don't think I need to make any more information necessary. It's clean, simple. And it's a path that people can follow.
I also learned yesterday (way to GO Thursday!) that at least in the Seattle area, the Seattle Cancer Care Alliance has created a Survivorship Program (206-288-1024). This program (billable to your insurance) allows former cancer patients (survivors) to meet with some super smarty-pants people who will put together an entire packet of information tailored just for you.
That's right, this packet will break down the drugs you were giving and the dosage amounts. It will tell you how much radiation you were exposed to, if applicable. And most importantly, it will tell you just what the long-term effects of this shit will have on your body; something, by the way, the oncologists fail to mention in their crusade to keep their mortality rates low....Seriously. They just look at your medical case and then pump you full of crap to keep you living. And as a patient, I just accepted this madness without asking- "Um, so what happens if I don't take the drugs?" (Actually, that's not true. When I bitched about needing radiation, my radiation oncologist snapped at me- "You're going to do radiation. Otherwise, you'll die. Sorry I have to tell you this.")
Also, this packet will recommend who, going forward in survivorship mode, you will need in your medical roster. For example, I learned that I will need a cardiologist, as apparently my heart took a beating (no pun intended) from one of the drugs I was given. And apparently I am at a high risk for developing heart disease....Man, that sucks as I really, really, really like cream cheese and bacon....
Sigh...
Now, maybe other places in the country are already doing this. And if so, I applaud you. However, if it isn't being done, then it's time for patients to rally the troops and demand this kind of information and support. I mean, this week alone I called my oncologist because my boob hurt. What? I knew I needed to possibly talk to a different doctor. But, who? as I wasn't sure if it was a cancer/blood clot issue or an OBGYN issue. And after calling the OBGYN THREE times (that's right, Jennifer Jaucien, I'm talking about YOUR office), and explaining to two different people that "I was treated for Hodgkin's lymphoma and had a blood clot blah, blah, blah..." I was still asked about the duration of my current pregnancy.
Suffice it to say, I defaulted to my oncologist. Why? They answered the phone and got me in the next day for an appointment. (Turns out it wasn't a blood clot; just needed some ibuprofen.)
So, the bottom line is this- after being a cancer patient, I sometimes don't see the forest for the trees. I am hoping my new status as a survivorship participant will ground me and get me on the right path and place the right experts in my life so that I do MORE than survive. I want to thrive, baby.... because this little lady is no longer scared or petrified.
Ok- so for the past few months post treatment, I have been casting about trying like Hell to figure out how to live my life; and wondering just why, oh why my life sounds like a Gloria Gaynor song?....Yes, it is true. First I was afraid. I was petrified. But after spending oh so many nights, just thinking how cancer did me wrong, I grew strong. I learned how to get along.....
Ok- that's some serious overkill; not sure about the strong thing at all as I am still trying to sort stuff out...but getting there? Sure!
While I offer no existential insights (sorry to all you cancer supporters out there who think a cancer diagnosis makes patients benevolent....) at this time, I am writing to tell you about a new word I learned: Survivorship.
Now, for those of you well educated readers out there, perhaps this is a word with which you are familiar. However, I was educated in Catholic school in the Midwest. What with those poor teachers trying to keep us from engaging in premarital sexual activities, how on earth would they ever get around to teaching us the word survivorship?
Well, at the ripe age of 44 I learned it- yesterday. It means, (drum roll please....) the state of being a survivor. What the Hell? Such a simple word. And learning it rocked my world!
For months, I have been casting about trying to figure out just how to best describe my new state of being. No longer being treated for cancer, I am not a patient. And because of the weird rules around "remission" I can't really claim that as my status either. So, I settled on saying "I'm in recovery from cancer treatment."
I know....too many words. And out of sympathy for the poor souls who had to endure listening to that crazy phraseology, I knew I had to do better.
Ok, so survivorship gets me there. I am SURVIVING. I am in the state of surviving some nasty shit. And I don't think I need to make any more information necessary. It's clean, simple. And it's a path that people can follow.
I also learned yesterday (way to GO Thursday!) that at least in the Seattle area, the Seattle Cancer Care Alliance has created a Survivorship Program (206-288-1024). This program (billable to your insurance) allows former cancer patients (survivors) to meet with some super smarty-pants people who will put together an entire packet of information tailored just for you.
That's right, this packet will break down the drugs you were giving and the dosage amounts. It will tell you how much radiation you were exposed to, if applicable. And most importantly, it will tell you just what the long-term effects of this shit will have on your body; something, by the way, the oncologists fail to mention in their crusade to keep their mortality rates low....Seriously. They just look at your medical case and then pump you full of crap to keep you living. And as a patient, I just accepted this madness without asking- "Um, so what happens if I don't take the drugs?" (Actually, that's not true. When I bitched about needing radiation, my radiation oncologist snapped at me- "You're going to do radiation. Otherwise, you'll die. Sorry I have to tell you this.")
Also, this packet will recommend who, going forward in survivorship mode, you will need in your medical roster. For example, I learned that I will need a cardiologist, as apparently my heart took a beating (no pun intended) from one of the drugs I was given. And apparently I am at a high risk for developing heart disease....Man, that sucks as I really, really, really like cream cheese and bacon....
Sigh...
Now, maybe other places in the country are already doing this. And if so, I applaud you. However, if it isn't being done, then it's time for patients to rally the troops and demand this kind of information and support. I mean, this week alone I called my oncologist because my boob hurt. What? I knew I needed to possibly talk to a different doctor. But, who? as I wasn't sure if it was a cancer/blood clot issue or an OBGYN issue. And after calling the OBGYN THREE times (that's right, Jennifer Jaucien, I'm talking about YOUR office), and explaining to two different people that "I was treated for Hodgkin's lymphoma and had a blood clot blah, blah, blah..." I was still asked about the duration of my current pregnancy.
Suffice it to say, I defaulted to my oncologist. Why? They answered the phone and got me in the next day for an appointment. (Turns out it wasn't a blood clot; just needed some ibuprofen.)
So, the bottom line is this- after being a cancer patient, I sometimes don't see the forest for the trees. I am hoping my new status as a survivorship participant will ground me and get me on the right path and place the right experts in my life so that I do MORE than survive. I want to thrive, baby.... because this little lady is no longer scared or petrified.
Tuesday, March 19, 2013
CANCER: Foot loose and cancer free...
That's right folks, you read it here- I made it to the 90 day mark. It has been 90 (actually 91) days since my very last treatment. And, I found out that I have some very, very sexy scans. No tumors. There's still some crap in my lungs from my little trip down bleomycin toxicity lane- but compared to what they looked like back in October, I am doing A-OK! That's awesome, right?
Well....now hold yer horses.....
Yes, the treatment part of the cancer journey has ended. Yes, I am tumor free. But I am not quite HEEEEAAAAUUUULLLLLED- yet.
I'll readily admit that I had no real substantial questions for either my oncologist or radiologist- (Ok, that's a lie. I did ask just when in the Hell my boobs would go back to normal size.) But they DID have some interesting information to offer. Namely, I will be immune compromised for the rest of my life and it's gonna take a year before I stop feeling like shit. See??? And you all thought it was all in my pretty little head.....
But let me explain- there's feeling like shit thanks to crappy chemo and radiation. And I truly believe most people who haven't undergone cancer treatment readily expect and even understand that. And then there's the feeling like shit that nobody every bothered to warn me about. Apparently the crappy drugs that saved my very life- and I expect to continue to save me- takes a tremendous toll on the ol' bod. And so, when I pushed my brilliant doctors a little further- they replied: "Yeah, you're gonna feel crappy for about a year."
WTF? A whole year? Maybe this will get me out of joining the gym after all....Kidding....
So, here's where it stands- 90 days post treatment. I am crazy, stupid tired. Still taking steroids till at least August. Though I've been told that the amount I'm taking is fairly minimal. (My reply? "Oh yeah? You better send a note to my adrenal glands cuz they're not on the same page....") And my lung function is improving daily.
You'll have to forgive me for not turning cartwheels and screaming like a little kid over all this information. I KNOW I should be happy. And, believe me- to not need chemo again is a true relief. But, to still feel yucky, when all I wanted to do was be that lady in the commercial who swam (SWAM!) daily during her radiation treatment is kind of a letdown.
C'mon now, it's not THAT bad. Just a little bit disappointing. As I explained to my doctor today, I really just wanted to be excellent- you know stellar in my recovery. I wanted to be the patient that you would make a commercial about...that bitch everyone envies while also aspiring to be like....and yet, I find out that, well I'm just normal in my recovery journey.
Oh well. There are worse problems, right? I could still have cancer. And for the next 90 days- till my next check-up, I don't.....
Well....now hold yer horses.....
Yes, the treatment part of the cancer journey has ended. Yes, I am tumor free. But I am not quite HEEEEAAAAUUUULLLLLED- yet.
I'll readily admit that I had no real substantial questions for either my oncologist or radiologist- (Ok, that's a lie. I did ask just when in the Hell my boobs would go back to normal size.) But they DID have some interesting information to offer. Namely, I will be immune compromised for the rest of my life and it's gonna take a year before I stop feeling like shit. See??? And you all thought it was all in my pretty little head.....
But let me explain- there's feeling like shit thanks to crappy chemo and radiation. And I truly believe most people who haven't undergone cancer treatment readily expect and even understand that. And then there's the feeling like shit that nobody every bothered to warn me about. Apparently the crappy drugs that saved my very life- and I expect to continue to save me- takes a tremendous toll on the ol' bod. And so, when I pushed my brilliant doctors a little further- they replied: "Yeah, you're gonna feel crappy for about a year."
WTF? A whole year? Maybe this will get me out of joining the gym after all....Kidding....
So, here's where it stands- 90 days post treatment. I am crazy, stupid tired. Still taking steroids till at least August. Though I've been told that the amount I'm taking is fairly minimal. (My reply? "Oh yeah? You better send a note to my adrenal glands cuz they're not on the same page....") And my lung function is improving daily.
You'll have to forgive me for not turning cartwheels and screaming like a little kid over all this information. I KNOW I should be happy. And, believe me- to not need chemo again is a true relief. But, to still feel yucky, when all I wanted to do was be that lady in the commercial who swam (SWAM!) daily during her radiation treatment is kind of a letdown.
C'mon now, it's not THAT bad. Just a little bit disappointing. As I explained to my doctor today, I really just wanted to be excellent- you know stellar in my recovery. I wanted to be the patient that you would make a commercial about...that bitch everyone envies while also aspiring to be like....and yet, I find out that, well I'm just normal in my recovery journey.
Oh well. There are worse problems, right? I could still have cancer. And for the next 90 days- till my next check-up, I don't.....
Monday, February 11, 2013
CANCER: Overdrawl
Last week, I experienced withdrawl symptoms from my least favorite steroid: prednisone. And, while withdrawl, drug addiction, etc is glorified in the movies, I can assure you this was one experience I could have lived without experiencing. Seriously...withdrawl sucks. And here's the crazy thing, it took me almost a full week to realize just what in hell this was.
Nope, I'm not stupid. I am, however a good girl who likes to follow the rules. And, the rules as I understood them were simple: per doctor's orders, follow the tapering regimine from the drugs and look for the following: extreme fatigue and anorexia.
On the one hand, extreme fatigue is something I experience on a fairly regular basis. And, to date I've been told that I should just "push" through it. According to the folks in the white coats, my body has been under assault for the past nine months- from toxic poison to radioactivity- and apparently I'm supposed to find time to "recover" from all of this. That's right- cancer treatment- while over- requires some serious recovery time. They NEVER talk about that shit in the commercials. Nope. Instead, you see this healthy person running in the park who is all done with cancer. Just like that. Poof! It's over. Except like all things marketing related, that's a damn lie. I just never knew I was so gullible to believe that crap....
Anyway- let's just say, I was crazy tired. I was also depressed, achy and sore, had zero appetite (which is called anorexia by the white coated persons) and just a hot mess. And, being the good girl, trying to "push through" it, I chalked it up to me getting a nasty cold or virus. Boy, was I wrong.
Here's the thing- I made a HUGE mistake. Yep- I did. When I got my cancer diagnosis and underwent treatment, I found myself interested and yes, even attracted to, the idea of being treated "normally." That was my way of "pushing through" it. That's right. I wanted none of that poor me, cancer-victim crap. For example, I was still the good, compassionate friend, always there to listen, hold a hand, wipe a tear. I was the good girlfriend who kept herself up in appearances and never said no- even when I knew better....I pushed through it. And at the time, I really believed it was the right thing to do. While I have no regrets, I now realize I paid a huge price for it. The reason? I am no longer that person and I have to re-set the expectations of myself and everyone around me. Dammit.
This past Saturday, while dining with my good friend Patrick, he remarked: "Cancer? I thought you were all done with that." And on Sunday, my sister asked me "But, isn't your life better now?" To both of them, I replied- "No, not yet." And the reason? It is time to recover.
The road to recovery- which isn't mentioned in the cancer commericial- is long and scary. It is marked with the same amount of unexpected shit that I went through during treatment. For example, withdrawl- which implies addiction- wasn't on my to do list. Not sure how I missed it.....but missed it, I did.
Sure- there's a lot I'm glad to have behind me: port removal, nicely oxygenated red blood cells, no more tumors, no more chemo, the return of my facial hair. And the upside to withdrawl? I'm no longer constipated. Silver lining, folks. Silver lining.
Look, I love life. Bottom line. And I am really glad to be alive- I think....But, right now, I'm just not sure I love myself in THIS life. My road to recovery- while I really, really want to make it "normal" for myself and every person around me, isn't going to be easy- like the commercial. And that just sucks. Before, I would take such pride in my independence. Today, the litmus test for any person to be in my life is for them to ask: "Hey, do you need any help?" Cancer taught me to say YES. Recovery is making me demand help in all of its forms. And it is teaching me to just be glad to get through the day. This means I'm probably not going to be the best friend to rely upon. I am certainly not going to be a good girlfriend....Instead, from the outside, it will appear as if I am a major asshole. Maybe I need to get a t-shirt printed up that says: "Nope, not an asshole. Just in recovery."
So, goodbye to normal. I now gently push through the days donning my kindest asshole-like tendencies. I thank every person who has come to my side to help "push through" this time with me. You are saving my life and my sanity. And seriously- a word of advice: just say no to drugs. Withdrawl sucks.
Nope, I'm not stupid. I am, however a good girl who likes to follow the rules. And, the rules as I understood them were simple: per doctor's orders, follow the tapering regimine from the drugs and look for the following: extreme fatigue and anorexia.
On the one hand, extreme fatigue is something I experience on a fairly regular basis. And, to date I've been told that I should just "push" through it. According to the folks in the white coats, my body has been under assault for the past nine months- from toxic poison to radioactivity- and apparently I'm supposed to find time to "recover" from all of this. That's right- cancer treatment- while over- requires some serious recovery time. They NEVER talk about that shit in the commercials. Nope. Instead, you see this healthy person running in the park who is all done with cancer. Just like that. Poof! It's over. Except like all things marketing related, that's a damn lie. I just never knew I was so gullible to believe that crap....
Anyway- let's just say, I was crazy tired. I was also depressed, achy and sore, had zero appetite (which is called anorexia by the white coated persons) and just a hot mess. And, being the good girl, trying to "push through" it, I chalked it up to me getting a nasty cold or virus. Boy, was I wrong.
Here's the thing- I made a HUGE mistake. Yep- I did. When I got my cancer diagnosis and underwent treatment, I found myself interested and yes, even attracted to, the idea of being treated "normally." That was my way of "pushing through" it. That's right. I wanted none of that poor me, cancer-victim crap. For example, I was still the good, compassionate friend, always there to listen, hold a hand, wipe a tear. I was the good girlfriend who kept herself up in appearances and never said no- even when I knew better....I pushed through it. And at the time, I really believed it was the right thing to do. While I have no regrets, I now realize I paid a huge price for it. The reason? I am no longer that person and I have to re-set the expectations of myself and everyone around me. Dammit.
This past Saturday, while dining with my good friend Patrick, he remarked: "Cancer? I thought you were all done with that." And on Sunday, my sister asked me "But, isn't your life better now?" To both of them, I replied- "No, not yet." And the reason? It is time to recover.
The road to recovery- which isn't mentioned in the cancer commericial- is long and scary. It is marked with the same amount of unexpected shit that I went through during treatment. For example, withdrawl- which implies addiction- wasn't on my to do list. Not sure how I missed it.....but missed it, I did.
Sure- there's a lot I'm glad to have behind me: port removal, nicely oxygenated red blood cells, no more tumors, no more chemo, the return of my facial hair. And the upside to withdrawl? I'm no longer constipated. Silver lining, folks. Silver lining.
Look, I love life. Bottom line. And I am really glad to be alive- I think....But, right now, I'm just not sure I love myself in THIS life. My road to recovery- while I really, really want to make it "normal" for myself and every person around me, isn't going to be easy- like the commercial. And that just sucks. Before, I would take such pride in my independence. Today, the litmus test for any person to be in my life is for them to ask: "Hey, do you need any help?" Cancer taught me to say YES. Recovery is making me demand help in all of its forms. And it is teaching me to just be glad to get through the day. This means I'm probably not going to be the best friend to rely upon. I am certainly not going to be a good girlfriend....Instead, from the outside, it will appear as if I am a major asshole. Maybe I need to get a t-shirt printed up that says: "Nope, not an asshole. Just in recovery."
So, goodbye to normal. I now gently push through the days donning my kindest asshole-like tendencies. I thank every person who has come to my side to help "push through" this time with me. You are saving my life and my sanity. And seriously- a word of advice: just say no to drugs. Withdrawl sucks.
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