.....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?
Friday, April 26, 2013
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.
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