December 27, 2016, I had my port removed. After a terrible scare in the fall, I was finally given the all-clear. Since my first 2 PETs were clear, in October, my doctor told me they wanted to do a regular CAT scan instead of another PET. The CAT scan came back as.... wait for it... inconclusive. Doctor said, apologetically, the only way to know for sure was to get the PET-CT. So I went in for that and sweated it out. Two stressed out days and $700 out of pocket later, I got the news - no cancer. No cancer!
Hallelujah!
For insurance reasons, I scheduled the port removal procedure for the end of 2016. Do you know, I almost regretted it for a hot second? Once that port comes out, you're not special any more. With that port there, that bump, not that I ever did, but I had the opportunity to flash it. To shove it in someone's face if they disrespected me. It made me feel, I am ashamed but not afraid to admit, special. Once that comes out, the special-ness is gone. The oh-be-nice-to-her-she-has-cancer kid gloves come off. It's back to reality now, back to the grind, back to life. Back to being normal. Normal, that deceptive, duplicitous word that means healthy but also means mediocre.
That's a scary thing. No, not as scary as cancer, but it's still a thing. What am I now, that cancer is just something that happened to me one time?
Damn lucky, that's what I am!
Gratitude. Gratitude always. Gratitude for every day, for every new memory, every new breath.
Back to work. Back to the world. Back to being all I can be. Back to doing what I was born to do, but now, with more power, with the strength and the fortitude and the respect that comes with surviving. But also, with more responsibility.
I have been spared. I did not die. Better make it worth it. Don't waste it. Don't waste it now, not knowing you were born to make history.
Follow that link, my friends. Follow that link to the most beautiful, joyful, awe and hope-inspiring thing to come out of last year. It is the epitome of everything I am, and everything I love.
People spent a lot of time complaining about 2016 and, honestly, I sort of have to agree with them. For all it's faults, for me however, two amazing things happened in 2016.
1) I beat cancer!
2) Yuri on Ice!!! was created.
Michael Carbonaro of The Carbonaro Effect recently spoke in an interview about two worlds, the one society presures you to believe is real, the one where you are born and expected to fit a one-size-fits-all mold and the world that actually exists, the one that contains the person you truly are. The fact that the person you are is too big, or too complex or too difficult for someone from the boiled down world to comprehend, doesn't negate the reality of who you are. It also does not negate the necessity of your existence. If you're a little different than the average person, that's not a bad thing. As he puts it:
The world needs weird.
The tragedy of life is not everyone has the capacity to see your reality and some people will try to force you to hide it. The beauty of live is you get to choose which image you present: the mask or the real you.
The person I am, the joyous, happy, proactive, ambitious, survivor is inspired by and reflected in Yuri on Ice!!! That's the world I want to live in.
I choose to cheer for my competitors, because victories matter more when everyone does their best. I choose joy. I choose life. I choose openness, tolerance, survival. I choose acceptance. I choose love.
Subsequent posts from me will most likely be over on my Novel In My Spare Time blog, because now that I have survived, I need to return to my cause. Human trafficking doesn't stop because you get cancer. Since I did not die, it means my work is not yet done.
Survival is a lifetime commitment. This is why I write the book.
Tuesday, February 7, 2017
Thursday, September 15, 2016
Survival is a Lifetime Commitment
Not only that, it had been a year and a half since I'd had a regular cold, and who remembers things that happen 18 months ago?
So, I panicked and started stressing. Stress? Oh no. Stress is bad. Cancer loves stress, almost as much as sugar. And cancer really, really loves sugar. Don't stress about your cancer coming back. Don't stress about stressing about your cancer coming back. See what I'm trying to say here? This survival/remission thing is hard. Being a survivor isn't something that happens in a second and then you're over it. It's a status you have to wake up and fight for, pray for, eat right for, stay calm for, the rest of your life.
Worth it? Oh totally. Of course. But that doesn't mean it isn't hard.
I went to my oncologist as soon as I got home. He told me I had a cold and the cough would go away in a few days. Yeah, I'd heard that before. About this time last year, right before my cancer diagnosis!
Anyway, I nodded and smiled and went to see my Second Opinion doctor in the big city. He told me I had a cold. I told him, "Yeah, but what if-" and he stopped me right there. He held up a hand, gave me one of those admonishing, I-know-more-about-this-than-you-do side-eyes and issued the following wise, sage advice, totally befitting his station as one of the leading lymphoma specialists in the country. Ready? Ready for a flash of insight and free advice from this learned and brilliant physician? Here's what he said:
"Don't be that person."
He then proceeded to laugh at me, and escorted me out of his office telling me he had "actual sick people" to visit.
You know what though? He was right. He was totally freaking right. Worrying doesn't solve anything. Though it's possible it can make things worse, it has no power to make anything better. It's useless.
Does this mean I'm cured of worry now? Of course not. I'm working on it. Day by day. Just like I'm working on surviving, day by day.
PS: The cough? Yeah, it went away in a couple days.
Sunday, April 24, 2016
The Giant SCI-FI Syringe
That's what it looks like: Part 1 of the four drug cocktail that cures Hodgkin's Lymphoma. It's a bright red liquid that gets pushed into a vein out of a nine inch syringe. It was all I could do to keep from bursting out laughing when I first saw it.
"That's it? That's what's going to cure me?"
It looks like something out of a Bugs Bunny cartoon.
Well, laugh or not, the stuff works. Eight months ago I had Stage 4. Now I have, well at the moment I have a partially undetermined definition of the current state of my health. My latest PET-CT scan from this past Thursday shows "no definite evidence for recurrence."
This isn't as good as my scan from six months ago because one of my lymph nodes lit up mildly in my neck, but not with enough activity to indicate cancer. Either way, at the worst I only have Stage 1 now.
While I await further results, I would like now to pause for gratitude.
I am grateful for every doctor who examined me, every nurse who poked me, every medical receptionist who was kind to me, every technician who took my blood pressure, every pharmacist who measured my medicine, every radiologist who read my scans and every specialist who gave me a second opinion.
So many of them not only did their job, but went out of their way to ensure my comfort. They were kind and supportive and understanding. They treated me like a person, not like a to-do list.
I have an inexpressible admiration for every one of these people. I couldn't do their job for a day, or even an hour. The people who work in this profession are nothing short of heroic. They deserve your patience and your respect.
Wednesday, November 25, 2015
Cute Hats
"It might not all fall out. It might just get real thin." - Damn Good Second Opinion Doctor.
At the time, I found this comforting. Thin isn't too bad. My mother has thin hair, and to me she always just looked like a beautiful woman with slightly thin hair. Turns out, there's a difference between 'slightly thin' and 'real thin.'
This is what the back of my head looks like right now.
Yeah, you think that's creepy? Check it out from the top.
(Before we go further, I want you to promise to back off me about the picture quality alright? You try taking a selfie of the back of your head with a clam shell cell phone.)
OK, Despite what it sounds like, this is not a vanity post.
I honestly don't mind the way it looks. Trust me, I've never been one of those girls who gets turned off by a little shiny head spot. Plus, I know it's temporary. My real problem is it's cold. I live in the North Eastern US and it's coming on December.
I'm freezing my head off up here, you guys!
Lest you think I'm being too negative about this hair situation, considering tomorrow is Thanksgiving, a day to take time to be grateful for what we have, I hereby commit to making the remainder of this post so happy-dappy positive you'll be ready to spit up in your cranberry sauce.
There are actually several benefits to my new hairstyle (or lack thereof.)
1) I'm saving a pile of money on shampoo, conditioner, gel, anti-frizz serum and razors. (Yeah, razors... Perhaps we'll save that for another post.)
2) My hair, when I have it, is long, curly, tangles if you move your head and frizzes when you look at it funny. It took five different products and fifteen to twenty minutes to tame each morning. Now that I don't have any, I actually have time for breakfast.
3) Housekeeping is easier as well. There's no hair accumulating on the bathroom floors.
4) Best of all, this lack of hair combined with my current, er, shall we say, climate-control issue, is the perfect opportunity to pursue my long time obsession with hats! I love hats! I've often lobbied unsuccessful for the return of the fabulous feather and flower filled hats of the 1900's and my favorite part of any horse racing event are the hat pictures. I've therefore taken this opportunity to wear some fun hats.
I had several hats lying around the house, so I started just wearing them. My husband did the sweetest thing ever and actually made me a winter hat by hand!
The plain hats were fun, but I wanted a little more color. So I went to Michael's Arts & Crafts store and they had a bunch of clip on feathers in a variety of fun colors. I bought a few and started to mix and match. I met up with my sisters one afternoon and they each made me one.
Here's a couple photos of the event. I'm wearing the hat my husband made me with the feather clips my sisters made.
I think my expressions say it all. I really do love hats.
I have a lot to be grateful for this Thanksgiving. Hats, family who make them for me, supportive friends, prayers from all over the world, a decent health care plan, smart people who grow up to be oncologists, hematologists and cancer researchers. If I list everything out it will be next Thanksgiving before I finish, so I'll sum it up in one word: Life.
I am grateful for life.
At the time, I found this comforting. Thin isn't too bad. My mother has thin hair, and to me she always just looked like a beautiful woman with slightly thin hair. Turns out, there's a difference between 'slightly thin' and 'real thin.'
This is what the back of my head looks like right now.
Yeah, you think that's creepy? Check it out from the top.
(Before we go further, I want you to promise to back off me about the picture quality alright? You try taking a selfie of the back of your head with a clam shell cell phone.)
OK, Despite what it sounds like, this is not a vanity post.
I honestly don't mind the way it looks. Trust me, I've never been one of those girls who gets turned off by a little shiny head spot. Plus, I know it's temporary. My real problem is it's cold. I live in the North Eastern US and it's coming on December.
I'm freezing my head off up here, you guys!
Lest you think I'm being too negative about this hair situation, considering tomorrow is Thanksgiving, a day to take time to be grateful for what we have, I hereby commit to making the remainder of this post so happy-dappy positive you'll be ready to spit up in your cranberry sauce.
There are actually several benefits to my new hairstyle (or lack thereof.)
1) I'm saving a pile of money on shampoo, conditioner, gel, anti-frizz serum and razors. (Yeah, razors... Perhaps we'll save that for another post.)
2) My hair, when I have it, is long, curly, tangles if you move your head and frizzes when you look at it funny. It took five different products and fifteen to twenty minutes to tame each morning. Now that I don't have any, I actually have time for breakfast.
3) Housekeeping is easier as well. There's no hair accumulating on the bathroom floors.
4) Best of all, this lack of hair combined with my current, er, shall we say, climate-control issue, is the perfect opportunity to pursue my long time obsession with hats! I love hats! I've often lobbied unsuccessful for the return of the fabulous feather and flower filled hats of the 1900's and my favorite part of any horse racing event are the hat pictures. I've therefore taken this opportunity to wear some fun hats.
I had several hats lying around the house, so I started just wearing them. My husband did the sweetest thing ever and actually made me a winter hat by hand!
The plain hats were fun, but I wanted a little more color. So I went to Michael's Arts & Crafts store and they had a bunch of clip on feathers in a variety of fun colors. I bought a few and started to mix and match. I met up with my sisters one afternoon and they each made me one.
Here's a couple photos of the event. I'm wearing the hat my husband made me with the feather clips my sisters made.
I think my expressions say it all. I really do love hats.
I have a lot to be grateful for this Thanksgiving. Hats, family who make them for me, supportive friends, prayers from all over the world, a decent health care plan, smart people who grow up to be oncologists, hematologists and cancer researchers. If I list everything out it will be next Thanksgiving before I finish, so I'll sum it up in one word: Life.
I am grateful for life.
Saturday, October 31, 2015
Remission!
It is official! I am currently in "complete remission" from my Hodgkin's Lymphoma!!!
I know, you are asking yourself, "What?! Remission on the fourth post? What kind of cancer blog is this? I feel totally gypped. I thought this girl was hard core. She's done already?"
Allow me to explain...
This past Monday I had my PET/CT Scan. The way the regimen works for people with the Hodge (that's what the cool cats over on the Hodgkin's Lymphoma online message board call it) is that after two rounds of treatment (four chemotherapy sessions, each two weeks apart) they do a PET/CT scan and compare it to the one they did during the staging workup.
After I was diagnosed, which happened as a result of my lymph node biopsy, they did a skull to mid-thigh PET/CT scan to see how far the cancer had progressed.
What they do, is an hour before the scan they inject you with a radioactive sugar tracer, then put you into the machine. Cancer love sugar, so everyplace there is cancer lights up on the resulting images.
My first scan lit up all over the place.
The first scan showed the cancer had progressed pretty darn far. It was in the biopsied lymph node in my neck (Stage 1) and on one side of my chest (Stage 2) and on the other side of my chest (Stage 3) and worst of all, it had crossed over my diaphragm into my spleen. Boom. Stage 4. Stage freakin' four. "Multiple avid spleenic lesions" the report read. Translation: my spleen was riddled with it. Just chock flipping full of cancer.
My second scan was beautifully dark. Nothing lit up at all!
Nothing in my neck, nothing in my chest and most of all nothing in my spleen. There are still a couple nodules in my chest, but they aren't lighting up as cancerous any longer.
I had a feeling the treatments must have been working because after the first one my symptoms disappeared almost immediately. The tightness in my throat, the cough after I ate, drank or laughed, the inability to make it up a flight of stairs without pausing for breath, all gone.
After the second treatment, my spleen hurt like crazy. I was so scared it was going to rupture. I think it was the drugs vs. the cancer battling it out in there. I was picturing little cellular sized cannons and spears being hurled back and forth.
All these were positive signs, and I did truly feel like it was working. But, my God, reading that second scan report, what an opportunity, what a blessing.
It is rare indeed in this world that even the most steadfast and unwavering faith is rewarded by proof.
For me to receive such a gift of Grace, despite my imperfect constancy is beyond humbling. He must have heard more prayers than my own to render me deserving of so speedy a reward.
I shall never find words, or expressions or actions to convey the depth of gratitude I feel toward everyone who supported me, encouraged me and prayed for me during this time leading up to the scan. The words of encouragement I received both leading up to it, and after I shared the results were overwhelming. It took me some time to even read them all, I just felt so surrounded by support, and caring and love. I just don't know how to express the indescribable feeling of comfort that gave me.
If I didn't write everyone back individually, if I didn't mention one event specifically, know that I noticed, and I cared. I saw that smile from the other end of the hallway, freely and involuntarily given, I saw the trace of fear that floated over a pair of dark eyes I didn't expect to be so effected that was quickly forced away behind a typical sentence of encouragement, I heard every thought that flowed through the five seconds of phone silence when I told you the bad news, and I read every word, every syllable, every letter of encouragement and joy when I told you the good. I read it more than once.
Every word mattered. Every emoticon mattered. Every hug, both real and virtual. Every prayer.
The journey continues. Though I am in remission, I still have to complete the six cycle regimen of chemo, with all its delightful side effects, including nausea, fatigue, missing Halloween, constipation, being chronically immuno-compromised, missing Halloween, mouth sores, insomnia, missing Halloween, hair loss, oh, yeah, and did I mention Freaking Missing Halloween!!?!?
You know what though? It's working. It's working and so far despite it's best efforts, all cancer has managed to do to me is show me that loads more people love me than I ever realized.
Love is greater than cancer.
I don't have much hair left at the moment (future blog post coming soon devoted to this enchanting topic) so I've been wearing a lot of hats. Usually I go all out for Halloween costuming, but I had Chemo two days ago and my immune system is down so I have to stay in, so I thought I'd just put this Halloween headband on instead. I kinda think I look like figure skater Johnny Weir in this so, I'm calling it my costume. 2015 - the year I officially dressed up as Johnny Weir for Halloween. Full disclosure, I think I have it on backwards. I feel Johnny would approve of this bold fashion choice.
Happy Halloween, my friends, my family. I love you all.
PS: If you're on Twitter, I totally recommend following @JohnnyGWeir. It'll make your life happier, I promise. If you want to make your life lifeier, or just want to know when I've updated this blog, you can also follow me @DeannaPostles.
I know, you are asking yourself, "What?! Remission on the fourth post? What kind of cancer blog is this? I feel totally gypped. I thought this girl was hard core. She's done already?"
Allow me to explain...
This past Monday I had my PET/CT Scan. The way the regimen works for people with the Hodge (that's what the cool cats over on the Hodgkin's Lymphoma online message board call it) is that after two rounds of treatment (four chemotherapy sessions, each two weeks apart) they do a PET/CT scan and compare it to the one they did during the staging workup.
After I was diagnosed, which happened as a result of my lymph node biopsy, they did a skull to mid-thigh PET/CT scan to see how far the cancer had progressed.
What they do, is an hour before the scan they inject you with a radioactive sugar tracer, then put you into the machine. Cancer love sugar, so everyplace there is cancer lights up on the resulting images.
My first scan lit up all over the place.
The first scan showed the cancer had progressed pretty darn far. It was in the biopsied lymph node in my neck (Stage 1) and on one side of my chest (Stage 2) and on the other side of my chest (Stage 3) and worst of all, it had crossed over my diaphragm into my spleen. Boom. Stage 4. Stage freakin' four. "Multiple avid spleenic lesions" the report read. Translation: my spleen was riddled with it. Just chock flipping full of cancer.
My second scan was beautifully dark. Nothing lit up at all!
Nothing in my neck, nothing in my chest and most of all nothing in my spleen. There are still a couple nodules in my chest, but they aren't lighting up as cancerous any longer.
I had a feeling the treatments must have been working because after the first one my symptoms disappeared almost immediately. The tightness in my throat, the cough after I ate, drank or laughed, the inability to make it up a flight of stairs without pausing for breath, all gone.
After the second treatment, my spleen hurt like crazy. I was so scared it was going to rupture. I think it was the drugs vs. the cancer battling it out in there. I was picturing little cellular sized cannons and spears being hurled back and forth.
All these were positive signs, and I did truly feel like it was working. But, my God, reading that second scan report, what an opportunity, what a blessing.
It is rare indeed in this world that even the most steadfast and unwavering faith is rewarded by proof.
For me to receive such a gift of Grace, despite my imperfect constancy is beyond humbling. He must have heard more prayers than my own to render me deserving of so speedy a reward.
I shall never find words, or expressions or actions to convey the depth of gratitude I feel toward everyone who supported me, encouraged me and prayed for me during this time leading up to the scan. The words of encouragement I received both leading up to it, and after I shared the results were overwhelming. It took me some time to even read them all, I just felt so surrounded by support, and caring and love. I just don't know how to express the indescribable feeling of comfort that gave me.
If I didn't write everyone back individually, if I didn't mention one event specifically, know that I noticed, and I cared. I saw that smile from the other end of the hallway, freely and involuntarily given, I saw the trace of fear that floated over a pair of dark eyes I didn't expect to be so effected that was quickly forced away behind a typical sentence of encouragement, I heard every thought that flowed through the five seconds of phone silence when I told you the bad news, and I read every word, every syllable, every letter of encouragement and joy when I told you the good. I read it more than once.
Every word mattered. Every emoticon mattered. Every hug, both real and virtual. Every prayer.
The journey continues. Though I am in remission, I still have to complete the six cycle regimen of chemo, with all its delightful side effects, including nausea, fatigue, missing Halloween, constipation, being chronically immuno-compromised, missing Halloween, mouth sores, insomnia, missing Halloween, hair loss, oh, yeah, and did I mention Freaking Missing Halloween!!?!?
You know what though? It's working. It's working and so far despite it's best efforts, all cancer has managed to do to me is show me that loads more people love me than I ever realized.
Love is greater than cancer.
I don't have much hair left at the moment (future blog post coming soon devoted to this enchanting topic) so I've been wearing a lot of hats. Usually I go all out for Halloween costuming, but I had Chemo two days ago and my immune system is down so I have to stay in, so I thought I'd just put this Halloween headband on instead. I kinda think I look like figure skater Johnny Weir in this so, I'm calling it my costume. 2015 - the year I officially dressed up as Johnny Weir for Halloween. Full disclosure, I think I have it on backwards. I feel Johnny would approve of this bold fashion choice.
Happy Halloween, my friends, my family. I love you all.
PS: If you're on Twitter, I totally recommend following @JohnnyGWeir. It'll make your life happier, I promise. If you want to make your life lifeier, or just want to know when I've updated this blog, you can also follow me @DeannaPostles.
Thursday, October 22, 2015
Getting a Second Opinion - Biggest Pain in the Butt Ever
Well, if you've read my last post you know that I'm already a bit of an expert about pains in the butt.
The following is an attempt to articulate just why the process of obtaining a second opinion beats out a(n extra-large sized) needle biopsy as the world's biggest pain in the butt ever.
When I first shared my diagnosis with people, the most common response I got back (after the expected five seconds of shocked silence and "I can't believe this is happening to you"s) was the suggestion that I should seek a second opinion.
A second? A second opinion? It took six months, seven doctors visits, five needle sticks (four regular size, one extra large,) a surgery and two biopsies to get this one!
I pretty much spent the entire month of August in doctor's offices. The last thing I wanted to do was voluntarily go to another one.
I tried to explain to all these people that Hodgkin's is very rarely misdiagnosed from a lymph node biopsy. There's these special cells called Epstein-Barr cells (they're named after the scientists that discovered them.) that can be easily identified in a microscope. They took my lymph node out, sliced it up, and looked at it under magnification. It was riddled with loads of Epstein-Barrs.
I told them about how the chemotherapy regimen of ABVD is standard across every treatment facility in the entire United States.
I told them that less than one percent of the time is a diagnosis of Hodgkin's Lymphoma changed to something else.
Then a friend asked me how many people a year get diagnosed with Hodgkin's in the US. I told her about 9000. "Oh, really. Nine thousand out of three hundred million," she said. "That's less than one percent isn't it?"
I got a second opinion.
There were three things that made this process so painful.
The first was the data collection. I decided if I was going to get a second opinion, I might as well get a Damn Good Second Opinion. So, I contacted a large, very famous, you'd recognize the name if I told it to you cancer hospital within a (long) morning's commute from my house. Before your appointment, you have to send them a copy of all your blood work, every imaging CD, the results of every scan, test and assessment that was done to make up your first opinion. In fact, some of this has to be sent before your first appointment.
The second was insurance approval. I knew the Damn Good Second Opinion place took my insurance. I looked it up online and called my insurance company before I even called for the appointment. However, because of the name of my insurance company or whatever the scheduling receptionist thought that implied, she didn't believe me and kept transferring me to the Damn Good Second Opinion insurance department, which in terms of managing call volume and hold wait times turned out to be a Mediocre At Best Second Opinion Insurance Department. So I kept hanging up on them because I was sick of waiting and I already knew I was in their network. Unfortunately, this backfired as I just could not make the appointment until I talked with their insurance department.
The third thing, and I have to admit this was my biggest hangup personally, is worrying what your current doctor thinks about you getting a second opinion. I mean, what you're basically saying is, "I'm totally relying on you to save my life, but I'm going to risk totally pissing you off by not trusting you and going to ask a more famous doctor." Essentially you're totally banking on your doctor not being a revenge seeking narcissistic sociopath. (It's possible that in addition to cancer I may also have some minor trust issues.) I do understand that the chances of this are very, very small. However, I've just been diagnosed with a disease only .003% of the population gets, so I'm not exactly trusting my luck at the moment. You'll forgive a small amount of paranoia.
Here's the good news: All of this was worth it.
When I went to the Damn Good Second Opinion place, they did not have to stick any more needles in me or do anything more than take my blood pressure and talk. The doctor and his research assistant were both kind, brilliant and actually very funny people. They told me there was no need to have my treatments done there, as they would be doing the exact same regimen as my first doctor prescribed. They even told me once I get my two month PET/CT scan done to send it down to them and they would double check it for me. I walked away feeling so much better about the entire experience and my illness itself, filled with hope and drained of much of my fear.
Here's some things I learned from this process:
1) You are entitled to receive a copy of all your medical records at any time. Your spouse is not, unless you fill out a form, or catch the flaky new girl on her morning alone at the desk.
2) If you take advantage of this right, you may find out the results of your first PET/CT scan before you hear it from the doctor. Utilize this power with caution. It's probably not a good idea to perform your own cancer staging workup in the car on the way to work after attempting to read the report on your own in the imaging center parking lot. You'll spend the rest of your day alternating between waiting for your doctor to call and googling terms like pleural effusion,
3) Hospitals keep the body parts they take out of you from biopsies, but they may not keep them in the same building, city or even county. Once I made my appointment, I learned my Damn Good Second Opinion doctor needed to see the actual slides of my bone and lymph node biopsies. Obtaining these involved several phone calls to my doctor's office and a trip to the hospital where I had my lymph node surgery. Then the Damn Good Second Opinion place called and moved my appointment up a week. This meant I needed to get those slides down there within the next two days, My husband and I spent an entire morning wandering through the bowels of a hospital looking for the right department to make this happen. I ended up on my cell phone with the woman who ran the department, who had to unlock a door to let me in. It was at this point I learned that she didn't have my actual lymph node on her. (This was a bit disappointing, as I was secretly hoping to take a peek at it myself.) I filled out a form in her break room and handed her my credit card so she could fax it to the medical facility that had it. The credit card was to pay the $43 fee to overnight mail a chunk of my lymph node to my Second Opinion doctor,
4) Sometimes you just gotta sit on hold. Eventually someone will get on the line and talk to you. Call from a speaker phone so you can multitask while you're waiting.
5) Your first opinion doctor will not care if you get a second opinion, in fact he will almost always expect it. There's no need to whisper to the receptionist and nervously hope he doesn't walk by when you ask for a copy of your written biopsy report. He will most likely not notice, most definitely not take it personally and under no circumstances will he think you are "cheating on him."
6) You should absolutely get a second opinion.
The following is an attempt to articulate just why the process of obtaining a second opinion beats out a(n extra-large sized) needle biopsy as the world's biggest pain in the butt ever.
When I first shared my diagnosis with people, the most common response I got back (after the expected five seconds of shocked silence and "I can't believe this is happening to you"s) was the suggestion that I should seek a second opinion.
A second? A second opinion? It took six months, seven doctors visits, five needle sticks (four regular size, one extra large,) a surgery and two biopsies to get this one!
I pretty much spent the entire month of August in doctor's offices. The last thing I wanted to do was voluntarily go to another one.
I tried to explain to all these people that Hodgkin's is very rarely misdiagnosed from a lymph node biopsy. There's these special cells called Epstein-Barr cells (they're named after the scientists that discovered them.) that can be easily identified in a microscope. They took my lymph node out, sliced it up, and looked at it under magnification. It was riddled with loads of Epstein-Barrs.
I told them about how the chemotherapy regimen of ABVD is standard across every treatment facility in the entire United States.
I told them that less than one percent of the time is a diagnosis of Hodgkin's Lymphoma changed to something else.
Then a friend asked me how many people a year get diagnosed with Hodgkin's in the US. I told her about 9000. "Oh, really. Nine thousand out of three hundred million," she said. "That's less than one percent isn't it?"
I got a second opinion.
There were three things that made this process so painful.
The first was the data collection. I decided if I was going to get a second opinion, I might as well get a Damn Good Second Opinion. So, I contacted a large, very famous, you'd recognize the name if I told it to you cancer hospital within a (long) morning's commute from my house. Before your appointment, you have to send them a copy of all your blood work, every imaging CD, the results of every scan, test and assessment that was done to make up your first opinion. In fact, some of this has to be sent before your first appointment.
The second was insurance approval. I knew the Damn Good Second Opinion place took my insurance. I looked it up online and called my insurance company before I even called for the appointment. However, because of the name of my insurance company or whatever the scheduling receptionist thought that implied, she didn't believe me and kept transferring me to the Damn Good Second Opinion insurance department, which in terms of managing call volume and hold wait times turned out to be a Mediocre At Best Second Opinion Insurance Department. So I kept hanging up on them because I was sick of waiting and I already knew I was in their network. Unfortunately, this backfired as I just could not make the appointment until I talked with their insurance department.
The third thing, and I have to admit this was my biggest hangup personally, is worrying what your current doctor thinks about you getting a second opinion. I mean, what you're basically saying is, "I'm totally relying on you to save my life, but I'm going to risk totally pissing you off by not trusting you and going to ask a more famous doctor." Essentially you're totally banking on your doctor not being a revenge seeking narcissistic sociopath. (It's possible that in addition to cancer I may also have some minor trust issues.) I do understand that the chances of this are very, very small. However, I've just been diagnosed with a disease only .003% of the population gets, so I'm not exactly trusting my luck at the moment. You'll forgive a small amount of paranoia.
Here's the good news: All of this was worth it.
When I went to the Damn Good Second Opinion place, they did not have to stick any more needles in me or do anything more than take my blood pressure and talk. The doctor and his research assistant were both kind, brilliant and actually very funny people. They told me there was no need to have my treatments done there, as they would be doing the exact same regimen as my first doctor prescribed. They even told me once I get my two month PET/CT scan done to send it down to them and they would double check it for me. I walked away feeling so much better about the entire experience and my illness itself, filled with hope and drained of much of my fear.
Here's some things I learned from this process:
1) You are entitled to receive a copy of all your medical records at any time. Your spouse is not, unless you fill out a form, or catch the flaky new girl on her morning alone at the desk.
2) If you take advantage of this right, you may find out the results of your first PET/CT scan before you hear it from the doctor. Utilize this power with caution. It's probably not a good idea to perform your own cancer staging workup in the car on the way to work after attempting to read the report on your own in the imaging center parking lot. You'll spend the rest of your day alternating between waiting for your doctor to call and googling terms like pleural effusion,
3) Hospitals keep the body parts they take out of you from biopsies, but they may not keep them in the same building, city or even county. Once I made my appointment, I learned my Damn Good Second Opinion doctor needed to see the actual slides of my bone and lymph node biopsies. Obtaining these involved several phone calls to my doctor's office and a trip to the hospital where I had my lymph node surgery. Then the Damn Good Second Opinion place called and moved my appointment up a week. This meant I needed to get those slides down there within the next two days, My husband and I spent an entire morning wandering through the bowels of a hospital looking for the right department to make this happen. I ended up on my cell phone with the woman who ran the department, who had to unlock a door to let me in. It was at this point I learned that she didn't have my actual lymph node on her. (This was a bit disappointing, as I was secretly hoping to take a peek at it myself.) I filled out a form in her break room and handed her my credit card so she could fax it to the medical facility that had it. The credit card was to pay the $43 fee to overnight mail a chunk of my lymph node to my Second Opinion doctor,
4) Sometimes you just gotta sit on hold. Eventually someone will get on the line and talk to you. Call from a speaker phone so you can multitask while you're waiting.
5) Your first opinion doctor will not care if you get a second opinion, in fact he will almost always expect it. There's no need to whisper to the receptionist and nervously hope he doesn't walk by when you ask for a copy of your written biopsy report. He will most likely not notice, most definitely not take it personally and under no circumstances will he think you are "cheating on him."
6) You should absolutely get a second opinion.
Thursday, October 15, 2015
First Reactions & Second Opinions
The day I got my diagnosis my oncologist had me come into the office. After diagnosis, they do what is called a "staging workup." Basically this is finding out what stage cancer you have. The staging isn't as big a deal for Hodgkin's as it is for other cancers, but it still needs to be done.
The first thing my doctor did was a bone biopsy. I got the diagnosis on the phone, my husband and I had our first big cry, and then we got in the car and went to the doctor's office. This was good for me, I felt like we were doing something right away, starting to work on the cure right away. It was also good for my husband, because he had lots of questions the doctor was able to answer.
Should you be inclined, you can get the full details of what a bone biopsy is here, but the short answer is they stick a needle through your skin directly into your pelvis bone in the general vicinity of your rear end, thereby making the procedure quite literally a huge pain in the butt. In fact, the biopsy is so uncomfortable, they numb the area first via injection. This allegedly helps, but it feels like they're just dividing one huge pain in the butt into five or six slightly smaller pains.
You have to lie on your stomach for the procedure. This in itself was difficult for me, because I'd had surgery two days earlier to remove the swollen lymph node in my neck which they biopsied to make the diagnosis. You start to know this is kind of a big deal when they bring in a nurse whose whole job is to hold your hand during the biopsy.
This isn't the normal nurse either. It's not the average looking middle-aged woman who always tells you about her son's wedding. This is the hot, twenty-three year old Latina nurse. (What? I have cancer, I'm not blind or dead.) Since I was lying face down on the table with my head away from the door and my eyes shut, I didn't know they'd switched out the nurse until half way through the procedure.
The biopsy procedure was performed by my doctor and seemed to require a somewhat significant amount of physical exertion. I didn't feel much once the local anesthesia kicked in, except when he aspirated the needle to pull out my bone marrow. That hurt, but only for a second or two. It was long enough for my breath to suck in and my eyes to fly open involuntarily. It was then I saw they had switched in the hot nurse. It helped.
The doctor actually showed me what he pulled out, which was sort of cool. Mostly looked like blood, with little tan/white pieces of marrow floating in it. Neat-o. I wish they'd let me see the lymph node.
I'm taking my diagnosis seriously, I promise. I understand cancer is a big deal, and not something to be made light of. I listened intently to all my doctor said that day, about the rest of the staging process, and the details of the upcoming chemotherapy regimen I was soon to undergo. However, during the entire process of the biopsy this 73 second clip was playing on repeat in the back of my mind.
They took that test tube off to biopsy it, to find out if the cancer had spread to my bones. Fortunately, it has not. The bone biopsy, painful as it was, was negative.
Furthermore, turns out the bone biopsy was not the biggest pain in the butt ever.
Getting my second opinion gets that honor.
The first thing my doctor did was a bone biopsy. I got the diagnosis on the phone, my husband and I had our first big cry, and then we got in the car and went to the doctor's office. This was good for me, I felt like we were doing something right away, starting to work on the cure right away. It was also good for my husband, because he had lots of questions the doctor was able to answer.
Should you be inclined, you can get the full details of what a bone biopsy is here, but the short answer is they stick a needle through your skin directly into your pelvis bone in the general vicinity of your rear end, thereby making the procedure quite literally a huge pain in the butt. In fact, the biopsy is so uncomfortable, they numb the area first via injection. This allegedly helps, but it feels like they're just dividing one huge pain in the butt into five or six slightly smaller pains.
You have to lie on your stomach for the procedure. This in itself was difficult for me, because I'd had surgery two days earlier to remove the swollen lymph node in my neck which they biopsied to make the diagnosis. You start to know this is kind of a big deal when they bring in a nurse whose whole job is to hold your hand during the biopsy.
This isn't the normal nurse either. It's not the average looking middle-aged woman who always tells you about her son's wedding. This is the hot, twenty-three year old Latina nurse. (What? I have cancer, I'm not blind or dead.) Since I was lying face down on the table with my head away from the door and my eyes shut, I didn't know they'd switched out the nurse until half way through the procedure.
The biopsy procedure was performed by my doctor and seemed to require a somewhat significant amount of physical exertion. I didn't feel much once the local anesthesia kicked in, except when he aspirated the needle to pull out my bone marrow. That hurt, but only for a second or two. It was long enough for my breath to suck in and my eyes to fly open involuntarily. It was then I saw they had switched in the hot nurse. It helped.
The doctor actually showed me what he pulled out, which was sort of cool. Mostly looked like blood, with little tan/white pieces of marrow floating in it. Neat-o. I wish they'd let me see the lymph node.
I'm taking my diagnosis seriously, I promise. I understand cancer is a big deal, and not something to be made light of. I listened intently to all my doctor said that day, about the rest of the staging process, and the details of the upcoming chemotherapy regimen I was soon to undergo. However, during the entire process of the biopsy this 73 second clip was playing on repeat in the back of my mind.
They took that test tube off to biopsy it, to find out if the cancer had spread to my bones. Fortunately, it has not. The bone biopsy, painful as it was, was negative.
Furthermore, turns out the bone biopsy was not the biggest pain in the butt ever.
Getting my second opinion gets that honor.
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