Repetition, Recognition, and Limitations

Part of being a cancer patient, especially with a lot of recurrence, you get sort of used to doing things again, and again, and again, and again. Tests, exams, blood work, doctor appointments, arguing w/ the insurance company, surgeries, radiation, hearing bad news, hearing decent news, hearing hopeful news, repeating said news to family, figuring out the best way to repeat news to friends. Stop. Repeat.

Maybe that's why repeating other life events just seems... natural... to me now. I'm repeating the Bar exam, I'm repeating my job search... I've been comparing my life to limbo a lot, but now that I think about it... it's a lot more like repeat. Now I'm sure it can't stay like this... but for right now, I'm getting to so everything again.

While I started Bar prep classes again yesterday... its actually the job interview I had yesterday that sort of set off this particular post. I wasn't planning on applying for any jobs right now. My classes are at night, the Bar is at the end of February. Obviously, I'm going to spend most every waking minute cramming. So the idea of working isn't particularly high on my list of objectives right now. But then a friend of mine said someone told him about a position working for a congressman, and he wanted to pass my resume along, and it just sounded really cool. And so, I took on my 7th ( I think) interview.

I mean it had it's downfalls... no pay... a year long commitment... really bad pay. But it was a step in the door for something I would be interested in doing. So I went to the interview, she liked me, said I was way overqualified for the job, then asked if I really thought I could juggle studying for the bar and working full time. A recent lawyer herself... I had to be honest... as much as I wanted the job it meant risking another failure, and she understood completely. I would basically be a glorified secretary for a year... it was a step forward but a massive leap back. She also knew that it would be a buffer position for me. Something I would just want to do to fill in until I got my license. She basically said all the things I've considered when looking for in between jobs. And once we got that out in the air, we just chatted like new friends comparing our lives and just... talking.

Mom, in her ever supportive role, reacted by telling me how she worked full time, while raising me, pulling 16 credits, and a 3.8 GPA and still found time to study somewhere in between. I hate, hate, hate, hate, when she compares her life to mine. I appreciate that it was hard for her... I was there... There's about 50 million perfectly true responses I could make to her but choose not to. And even now, it sounds a little too contemptuous to write out. So I'm just going to say I know it was hard for her... but it was a significantly different situation. She went on to even be like, "I wonder if I was a good mother then," and "I wonder how we kept it together then." My response was, " I wasn't a heathen wild teenager." Which basically meant I took care of myself, the house, and kept things working. It wasn't particularly hard... sort of just came naturally to be very prudent and responsible because I could easily see things going all to hell if I wasn't. A remarkably common theme when looking at how I've dealt with the whole cancer bit.

Sorry, I'm sort of pointlessly rambling here. Basically I just don't think she ever looked at the things I was doing to keep things going. Just like now she doesn't look at what I'm dealing with; she only knows how to see what she's doing or has done.

So... I don't want to say I didn't get the job. I think if I had committed she would have taken me in a heartbeat... But I was honest. I was actually honest about what I thought my limitations were. A first for me. And so we agreed that come March, when I'm done w/ the Bar, I'm to give her a call and see if anything is open.

I think for the first time in my life I am afraid to see where my limitations actually are. I've spent a lot of time pushing myself to the limits. Taking on too much work. Trying to do too much in life. And it's been absolutely fantastic. But I'm afraid that right now, if I push it and cross the line... I'll be stuck here forever. This is new to me. Even before cancer, I tried to push what I could handle (of course in a responsible and prudent over-achiever manner... not a crazy partier sense). Threats to my physical life sort of magnified that attitude. But now... its my long-term life that's threatened.

Am I growing up? Am I just growing tired? Is this just a phase? I don't know... but I know its what I need to do.

Identity Crisis

Who am I if I'm not a cancer patient? But nor am I really a cancer survivor. I am not officially a lawyer, nor am I a law student... or a student in general... and i've been one of those since I was 3/4ish... I seem to be missing all the things that tend to define me as a person. I remember when i was a volleyball player, and athlete, a nerd. Labels were easy in high school.

But now I sit here at 26 in place that I have identified as limbo. A state of flux, where I lack any definition. 6 months ago when I had a million things to write about thyca, I was a cancer patient. I had definition. Even if it involved the "wait and watch" approach to treatment. At that point someone was watching. Now, 6 months late... I can't tell you the last time I went to a doctor for thyca. I know, I know... stupid on my part... but I scheduled an appointment for a doctor down here, and the next appointment available is in February... I scheduled this some time in october. So no one has been watching me, checking me, keeping it fresh in my mind that i have cancer.

I know most of you out there may think... wow... what a blessing not having cancer thrown in your face every other month. But what if that's something you're used to, something you've been dealing with for 5 years. I've made major life decisions based on this stuff. It has shaped who I am. There is no denying that. Even just shifting to "wait and watch" was a bit of a blow to the identity ego. When people ask if your in remission... I think I just grumble a bit. No, I'm not a survivor... not really... limbo.

My family, as per usual, don't get it. They don't seem to grasp that I am a special case. That I have special needs... HAHAHA I'm an SNC. Upon leaving my doctor, I asked him if he knew anyone in my area that does thyroid cancer. His response was that he wanted me treated in DC and gave me 2 names... the other option was to be treated at a medical research facility. Anyone who is up to date on how you treat a case like mine... w/ lots of recurrence, lots of radiation, lots of tests, lots to look for, and all very small. His fear, that a local yocal is going to look at my tests and determine i need to be fried by another round of radiation; that they can't accept the "watch and wait" approach. A part of me agrees w/ the not waiting... the paranoid part, the rest of me though... agrees w/ my doc. I've read the science... I'm pretty good at understanding things... I'm probably immune to the radiation at this point... and i've had a hell of a lot of it.

By now i was hoping to be living in DC. Hasn't happened... so, on pressure from the 'rents, I've made an appointment w/ a local yocal... the only doctor in the area that does thyroid cancer from what i can tell. And by area I mean the 7 cities. I can't even shop for a doc here. And again, I have to wait to February just to meet the guy.

So I talked to my parents about using the doc up in dc. Mom's response, "well what if they find something; I can't take off work nor afford to go up there and stay in a hotel. I know you want the best, but that isn't really practical."... Wow... my response, "i would have no problems using a local guy if all he was doing was checking my bloodwork... if there were nothing there"... mom, "but your fine"... "no mom, i have something in my neck" ... "have you felt something, are you worried about it, or are you just being paranoid"... "No, we already know that I have something in my neck, I told you this months ago... you cried, i lit up an mri, bloodwork was all positive, i need more than basic tests".... oh... proceeded to tell my dad how i felt. He agreed with me. Till he talked to my mom. The conclusion relayed back to me was, "we can always change to a different doctor if something shows up." Apparently it completely is going over their heads that something has shown up, almost a year ago... soooo annoying.

So basically, they're saying they can't afford to take care of me in dc if something is wrong, and I'm saying that something is already not quite right and if it gets worse i sure as hell don't want someone down here poking and radiating me. And they have no idea that still have stuff going on... its like b/c i moved I'm done and in the clear.

So I guess that's more of a case of mistaken identity.

Any which way I look at it, its all a part of a larger identity crisis. I don't really know who I am or what I'm supposed to be doing anymore. I don't want to wrap my world around cancer, its even why i backed off from the blog... but I don't know what else there is for me; especially if in a few months i have to go back to being the cancer patient. There's no way to move on like this.

How far should we be monitored?: #1 the side-effects we know?

Ok, so here it is. Probably the most research I've put into a post, rather than me just talking from my gut. This is going to be a multi-post topic, I don't know how many post just yet, but if you have had something that might be considered a side-effect, let me know and I'll dig up whatever else I can find. I also think it is important stuff for us to think about right now when lots of questions are flying around concerning the cost of healthcare and the idea of nationalizing healthcare; this will also tie in with advocacy and screening campaigns. Are we taking too many unnecessary tests? Or not enough? What costs more, preemptive screening, or finding a disease down the road? Should treatment just be limited to the disease; or should it be expanded to treat the side-effects of the treatment?

One of the biggest things I've notice when talking to other people about having cancer, is after a while, everyone has a similar type of question, "hey... have you had x start happening to you? Do you think it could be a side-effect?" The fact is, no one seems to actually know what they should count as a side-effect of cancer or cancer treatment v. a side-effect of life in general. And yeah, I'm definitely included in this group. I don't want to be a hypochondriac, paranoid every time I think something is off. But at the same time, being a run down law student, I know that I probably pass off far too many things as just being a part of my everyday life. It isn't comfortable to report every little thing to the doctor.

The goal of these posts is is to first, try to identify the side-effects of having thyroid cancer, be it from surgery or I-131. Then in following posts, I want to look at those side-effects and try and figure out if they are things we should have doctors monitor. Its sort of a proactive list; something to make me feel less crazy about my side-effects, but also something I can print up, take with me to the doctor and be like, "look I'm having issues, I've found other people w/ my same issues, maybe this is something we should check out... Or maybe there is a giant research grant in it for you for identifying something that no one usually notices." And I don't want to say this will make you an expert, and I don't want to become one of those patients who claims to know more than the doctors, but I like the idea of knowing, hey my TSH is normal but I still feel hypo, maybe my Vitamin D is off?

This is a list of side effects compiled for just a general google search for "side effects of I-131"... I don't repeat things already said... but with that said, you would be shocked to see how limited most of the lists are, and how many just copy and paste paragraphs from one another. The legal side of me cringes. If you learn nothing else, it needs to be that you should seriously run through these things with your doctor, and take internet knowledge with a grain of salt.

These symptoms are from: MedicineNet.com
*suppression of bone marrow, resulting in anemia
*acute leukemia
*reduction in red blood cells and platelets
*Radiation sickness, including:
*nausea
*vomiting
*chest pain
*increased heart rate
*itchy skin
*rash
*hives
*Thyroid crisis (what on earth is thyroid crisis?)
*Inflammation of salivary glands
*Chromosomal Abnormalities (WTF, what does that even mean?)
*death
* 3 days post treatment:
*neck tenderness and swelling
*pain w/ swallowing
*sore throat
*cough
*About 3 months post treatment:
*Hair thinning

RadiologyInfo
*Thyroid hormone pills every day
*"There are essentially no other permanent side effects from the procedure." (HAHAHAHAHAHAAHAHAHAHAHAHAAHA)


Women & Cancer Magazine
*allergic like reactions
*loss of taste
*increased risk of developing secondary malignancy (somewhere else, I've read that post thyca is a significant increase of then specifically getting melanoma)

Care First Blue Cross Blue Sheild
*Changes in weight
*excessive sweating or intolerance to heat
*feeling depressed
*unusually tired or weak

Side Effects of High Dose Radioactive Iodine for Ablation or Treatment of Differentiated Thyroid Carcinoma
*Ok, for this one you should just click the link and read what it says. Its probably the most comprehensive listing of side effects, even has charts and things, and descriptions... its only a few pages, and goes over in detail a lot of things already said, I'll point out some important ones
* Larcamal Glands, aka dry eyes/tear ducts sort dry up (which actually results in watery eyes)

Other side-effects of losing your thyroid; this list is mainly composed of things I've learned at thyca support meetings and conerences, along with reading a lot of discussion on facebook and PlanetCancer.
* memory loss
* hypothyoidism
* prone to getting sicker (not so much sick more often, just worse when you do get sick)
* calcium deficiencies
* damaged vocal nerves
* damaged parathyroids
* Vitamin D deficiency
* Sex drive mood swings
* Irregular periods
* Early menopause

And I think that covers more or less the entire gamit of things. For the next few posts, I essentially plan on tackling these things like a hypochondriac. I acknowledge now, not everything I'm going to suggest is necessarily feasible. Its more of, "in an ideal world where all health coverage were free, and ensuring good health and quality of life where the most important thing..." So chime in if you have something to add, and as we go through I'd also really like to hear from non-thyca patients about why you think doctors should be monitoring.

The War on Advocacy

So I've read this article floating around today about the bad impacts of advocacy and awareness efforts of such things as "Check Your Neck". If you haven't read it, you can find it here.

And its made me angry. No... not just a little angry, but quite frankly it pisses me off, and if it pisses me off just about how it handles thyca, then I can't imagine how other people trying to spread awareness for other cancers must feel, but am guessing its similar. Specifically the notion that thyca isn't that deadly and checking doesn't change prognosis pisses me off. This is EXACTLY what is wrong with doctors and their total distance from patients. I know that thyca isn't a super killer. But SERIOUSLY, you aren't just checking your neck to make sure you don't die; its a matter of quality of life!

To catch thyca before it gets in your lymphnodes, your parathyroid. Before it gets that chance to get into your bones or your lungs. To catch it before its side effects have a detrimental effect on your weight, on your brain, on your emotional well being.

It's not just about reducing the death rate!

Its to prevent an experience like mine. Where it seemed so obvious to my ob/gyn that I had an enlarged thyroid that she almost didn't say anything to me. Promoting checking your neck saves from that embarrassing moment when the doctor says, "You know you have an enlarged thyroid, right?" I mean really? How many of us even knew exactly what a thyroid was? And THAT is a problem. THAT is why we need a check your neck campaign.

Maybe if I knew, then it wouldn't have spread. Maybe if I knew, then they would have been able to take it all out when they grabbed my thyroid, and I wouldn't have to be constantly monitored to see if it pops up again. I wouldn't of had to have a neck dissection, over 500 mCi of I-131. A little bit earlier detection may have saved me some weight gain, and the emotional bits that go along with that.

And maybe if I had known anything about thyca, it wouldn't have been so scary! Cancer awareness, advocacy, promotion... actually make that awareness for any disease, suddenly makes it something you can control. If you find something suspicious... suddenly the ball is in your court. You've been told what to do. You know how to handle it. Breast cancer is the best example of this I think. I feel like, if i found a lump, I would know off the bat what to do. And I would feel confident that I caught it early, and it would save my life. Breast cancer has done a fantastic job about getting knowledge out there.

So I guess to be fair, I do need to ask myself if maybe the past few years have resulted in some trigger happy reactions when finding new nodules. The article suggests that detection leads to finding tumors that we could just live with and puts us at risk for other issues. Would you really want to take that risk? I mean, I hate hate hate hate hate biopsies... and it has taken me a long time to accept that i can just have tumors floating around in my neck and I'll be ok. This is a hard one. Maybe I would be a shinier happier person if i didn't know? Ignorance is bliss...

Hmph... I'm afraid I've talked myself into a mental conflict. How nice it would be to wander around knowlegeless... you know, until i just kiel over one day b/c my unknown cancer spread a little too far. The regret you would feel in learning that you may be dying from somethin you could have prevented?

Are we wasting money on unneeded tests? This is ironic b/c i'm working an an arch of posts about how closely our doctors should be monitoring us, what kinds of tests they should be running, and if they would improve our quality of life. I think for me, I would rather have control over my life, have the quality effected by tests, rather than disease.

I think the key issue now is that we don't have the ability and knowledge to determine the difference between what needs to be monitored, operated on, treated, or just left alone. If we had that knowledge, then this whole article would be moot. Isn't it better to start getting the knowlege, and the habits of checking out there now? Doesn't more detection contribute to studyies and understanding how and when to treat?

Then finally it comes down to, even with thyroid cancer, to that one person, who saw the advocacy campaign, checked their neck/breast/prostate/est, found something and got it tested, and it saved their life. 1,600 people die from thyroid cancer each year. If even just one of those people could be saved each year, doesn't that make it worth it?

Would you like to take a survey?

So I've been juggling around about 50 different ideas of things I would really like to blog about. I think its kind of a side-effect of getting picked up by Wellsphere Health Blog Network, really getting into the different resources that are available out there for cancer survivors, and pure whole hearted effort to procrastinate and avoid studying. Not to mention I'm trying to space out blog posts; maybe write them and not post, so I have things around for weeks when not much is going on (yes, I'm putting in the effort of making this at least, a weekly blog).

But today's topic trumped all the others because I'm guessing it is a little more time sensitive. It is a survey about how cancer has affected your sexual life. I'll be honest, it's awkward to take. It's about 30 minutes of personal questions rating everything from emotions and feelings, to how you consider yourself in bed. I realize that a lot of you might be totally turned off by this, which I understand. But the purpose is to see the difference between people w/ cancer and people without when it comes to sexuality.

I have my own opinions about cancer and sex, and how much "the system" and doctors address the issue. I'm going to save those for a later post, maybe after the results from this study come out.

So here is the link:
The Sexual Self of Young Adult Cancer Survivors and as Compared to their Healthy Peers

Please take the quiz, and pass it along. It is for both cancer survivors and people w/out cancer.

Thanks!

B/c things never go quite as planned...

After taking about 20 pictures of the one new lymph node, the radiologist sent me home. I think its b/c it was after 5 and they wanted to go home... only to tell my doctor that this new node appeared to be cancer, so now i go get it biopsed tomorrow morning. My conclusion: ALWAYS make sure your doctor asks for both an ultrasound and FNA (fine needle aspiration aka a biopsy).

I graduate from law school in 2 days. I move in 4. My goal was to leave all of this behind. People keep asking why I'm leaving. At this point for as much as i love this place, I hate... I hate being here. I hate the memories attached. I hate that all the bad things have tainted the good things. I can't live with this anymore...

Eric was the person who was there again... just minutes after bad news hit. He new when he walked in something was wrong. Sigh. And I can't tell my parents. My dad comes in tonight... I can't do it. Not this weekend. Not until I at least get the biops result.

Something I wrote back in 2007 that I randomly found on my hardrive

So I found the below ranting on my hard drive... amazing how the same feelings keep popping up again and again over the years.



Sometimes things just suck more than anyone can possibly begin to imagine. I ask you if you know what it is like to have every inch of your body and soul ache as if at any moment it will just give out from the wear and tear. When emotions and experience hurt physically. Not so much depression as a realization that too many things are wrong to be righted. That there is so much you can’t change you no longer have control over your life. And the more you try to control the larger the hole you fall into. When so many things have gone astray that your goals seemed blurred. Where you long for the opportunity to be torn between an ambitious career and life with a happy family because now both options have been torn from you in the most callous of manners. How you wish for a second in time there would be someone that could honestly tell you that it would be ok. Someone to sincerely hold you, someone who actually cares beyond just a friend. It’s the point you get to when you wonder if life would be better if you had just lived it the way you wanted to… pursued your dreams… pushing it to its fullest extent and then dying young, or if fighting for life, subjecting yourself to millions of tests, days of worry, never being able to truly be free to do what you want again, yet living a “full” life into old age…. But really, what kind of quality of life is that??? I don’t know what the point of what I’m trying to do means anymore, especially if I can’t pursue that life. I’ve lost my best friend b/c I dared to go to a level more than friendship… now he won’t talk to me. He was the only thing that really kept giving me hope for something more. And now I’m more alone than I have ever been. I have no dreams that can be achieved. I have no hopes. I have no motivation. I’m just waiting around… waiting for the next blood test to come back, the next scan to be performed, the next phone call confirming the next appointment, the next interview that will never come and a real world that can only shun someone such as myself. And I don’t know how to make any of it better besides more waiting and watching as the world passes me by.