And suddenly there was conversation

Sorry for the bombardment of posts... really, I had decided to pre-write a post a week until at least after the Bar was over so I didn't spend so much time doing it... only to start randomly have things happen, so now I've got like 6 weeks of pre written posts lined up, and still keep throwing things in the middle.

But, yet another extraordinary thing has happened thanks to the Peace Corps nomination. My friends are actually talking to me about my cancer situation.

I'm floored.

Its such a taboo issue, and had settled so far back into people's minds, that every time I tell them about the nomination, but warn I still have to pass the medical, its sort of like a reality smack. For most people its the first time I've told them that the docs told me I would probably always have cancer. For others, its explaining the risks, and talking about why its even an issue. As far as they can see, I'm fine.

I told my best friend the other day that I would not be getting radiation again... ever. She bout damn near flipped. Her sister, a couple years after me was diagnosed w/ Hodgkins... I can't imagine how she must feel. But I explained to her the new thyca guidelines. How 5-600 mCi accumulated in a life time significantly increases the risk of secondary cancers, and I've already had over 500. I told her about how I'm not going to do biopsies on things that are smaller than a centimeter anymore, and how I would need good reason to cut back into my neck for a third time considering how much scar tissue is already built up. It was a conversation I hadn't even really had with myself, but it all just spilled out. I am tired of aggressively fighting my cancer, and its time to take a step back and reevaluate things.

Further, things have caused me to think a lot about whether I realistically could do the Peace Corps. I understand entirely why they wouldn't want cancer patients. But, my meds are level, I'm getting into great shape. Overall, I'm pretty healthy. I'm not going to die or have ridiculous symptoms that would need me sent to a hospital. I would be fine just getting some blood work once a year to keep in check. I am a fully functional human being. I'm surprisingly confident about all that.

So what is it that makes me a bit of a neurotic cancer patient? I think its the little things that go along with cancer. Its being jobless, and going over the what-ifs. Its the loss of independence, and the constant reminder of everything I've done. I'm angry and I'm frustrated that this stupid little thing could have any impact on my life. And I'm worried, and justifiably so, that it will continue to do so. I'm not afraid of cancer, or it coming back, I'm afraid of how that might effect the life I've built. And I'm afraid of building that life in case I lose it again.

Twighlight Zone: A positive experience navigating the health world....

So, with the Peace Corps nomination comes the absolutely terrifying part... the medical evaluation.

Today, I got to see everything I need done, not actually a bad list, and probably a lot of stuff people should have done every once in a while anyways. Yes it means a few extra doctor appointments and a few more needles than usual, but, and I think for the first time ever, I'm sort of excited to do it. I'm not usually big on positive thinking, but in this case, I can't seem to conceive of not getting to do this. And while I'm wary of things that are too perfect, I really want this.

So I decided to start with something easy: hunting down my immunization records. Most normal people probably have these somewhere in a file folder. But due to the fact that I'm a travel junkie, I've probably had about 50 million times more immunizations than the normal person. The last time I think I got like 6 different ones. And they all got written down on this little card that was to stay with my passport. This little card did not survive the border check, I believe into Cambodia. I find this pretty amusing on some levels... So, the options are lie about what I've been immunized for and on what dates(b/c I don't really remember), get all the vaccines again ($), or go through the epic battle of fumbling through medical record offices, slicing through red tape, and hoping that they even keep this info on file. Oh, and I couldn't even remember where I got this done at. Amazingly, the hardest part of all this was messaging a friend and saying, "what is the place next to Arby's in Oakland where you get immunizations done?" County Health Department. I only had a main phone number; I prepared for the epic wait and phone maze. With in seconds of dialing and explaining I got an, "Sure, let me transfer you to the clinic."... Where the woman was like, just fax me a letter that says I can release your info to you. No form or anything. The whole thing took all of 5 minutes. I was in shock.

I then proceeded to call up my insurance company to see what they would cover, again prepared to be sitting on the phone with horribly unhelpful people. After arguing with the machine over whether I was saying "Y" or "9" for my id number, I was definitely mentally prepared to take on the customer rep. I explained what I needed done, gave her a list of the tests, and she was like, "yeah, they should all be billed as routine services and covered 100% through a participating provider." ... "let me just go ahead and pull up the list to double check for you."... "did you have a doctor in mind, I can check that for you too."... OMG she didn't send me to the internet to look up my own provider.

This whole experience has put me in a state of total shock. Enough so, that I thought I should share it with you all, since I'm sure most of you out there are like me, and used to the angry frustrating experiences of dealing w/ insurance and medical reps.

Doing what makes you happy.

Today was a great day.

I got to do the Hokey Pokey... not the dirty kind. Shame on you. Actually, every Saturday I get to do the Hokey Pokey. I've started teaching swim lessons with handicapped kids again. Its been a long time. It's taken me 3 weeks to become a person again. Going from lawyer to kid person takes a giant leap. The last time I worked w/ the kids is right after my first surgery, the summer before going to law school. At that point, cancer was just a random speed bump that meant I was going right to law school. I was still more or less me, a lot less bitter, a lot less stand offish, and really good with kids. It feels really good to be at ease with kids again. It feels really good to volunteer.

It is what makes me happy.

One thing I've always had a problem w/ with my cancer is that I already had great big plans about going and saving the world. I didn't need a life altering illness to make me see how precious and awesome life is and how I feel like I have a responsibility to help people. Actually, its been one of my biggest anger points. I've been trying to do good things and cancer keeps getting in the way.

But today... I got a Peace Corps nomination. Not just that, but its to my number 1 region I want to go to. I still have to pass the medical and what not. But the program leaves in September, and I need to do some hard core language training before that. Its going to either be in Morocco or Jordan. 2 years. I'll have to learn French and Arabic. I do that well, and I'm looking at incredible qualifications. Its doing community development work, with a focus on at risk youth development. Something I've already done.

I know there's still a good chance I will fail the medical. I know this. But for the first time, in a very very very long time, I feel like I'm going to get to live the life I want. I'm going to do something that makes me feel good; I'm going to do something that makes me feel happy. I'm going to do something that I'm good at.

For the first time, in a very very very very very very very long time, I have hope.

robs v. Hippa

As my first doctor's appointment with the local endo looms in the near future, I have taken on the daunting task of trying to get my medical records sent to him. I had originally asked for my records back when I was leaving, and trying to be helpful, the woman told me not to worry about it, sign a Hippa now, then just call and let them know where and to who they needed to be released to and they would take care of the rest.

Helpful people should be shot some days.

Needless to say, that stupid, time consuming little piece of paper has gotten lost in the ether, and I'm now scrambling around to print up some from the internet and get them up to Pittsburgh, and processed, in enough time for them to sit with my Bible thick file folder and a fax machine to get it to my new doctor. Who will, inevitably not actually read them, until I throw down with the 20 questions, and he realizes I'm not actually just there for a check-up, and do in fact have things that need done.

This is my healthcare reform plan. Or at least part of it. Its called, a universal records system, where any doctor can type in your name, and whalla, there's your medical records. All of them. Patients should be able to access their own records as well. And for those crazy paranoid people who brought about the death of millions of trees via hippa forms, they can always opt out of the program, and deal with signing forms and transferring documents on their own damn time. Or hell, it could just be an opt in program for all I care. But it should be a mandatory system on all doctor computers. With 2-3 backup systems.

OMG, are you talking about non-competative medical software? How will the companies make money? Screw em. Does Congress have the power to regulate this? eh... off the top of my head I'm going to go with yes, under the commerce clause, and something with public welfare, and just for good measure, I'm gonna say that its a restriction on the movement of people not to have it.

On the extreme and shallow side, look at Heath Ledger... multi-doctors, multi-perscriptions, bad interactions... dead... If they'd have known or seen what he was on, possibly not dead. Maybe this should be patient responsibility to tell our doctors everything... yeah, I guess. But we are human, and that doesn't always occur to us. A thyroid example... who out there would link foot pain to being hypothyroid? I mean really. Plantar faciitis... thyroid meds must be off. I went through a year and a half of cortizone shots in my foot only to find out later it was probably my meds. Nor do I have the brain capacity to tell you all the details of my case. I know this makes me an awful cancer patient. And being in the process of moving, all of my records are packed in a box. They weren't supposed to be, but that's where the ended up.

Also, it would be great for my last doctor's plan to just get passed on to the new doctor, without me having to try to explain everything. This may even involve a phone call and interaction between doctors... but at least then I don't look like the know it all patient telling the doctor what he needs to do the first day (yes, I have a list, no I don't have a clue how to be that upfront with a doctor).

Why wouldn't you want your doctors to know everything that is wrong? All your medications? All of your history? What shady business are you hiding? For a lawyer that's really big on human rights, I find that the right to privacy tends to be excessive. I just have this, if you aren't doing anything bad, then what do you have to hide mentality.

Yes, there would need to be safety precautions set up. I'm not a software engineer, I'm just someone who sees a way of saving some cash and making life easier for we sick people. Even if it was just electronic versions of Hippa... with a digital signature pad that you could sign in the doctor's office or something to allow your record's release.

I imagine a world with easy access for doctors to my medical records. Not my family, not my job, not the insurance company. My doctors.

Sigh... too much to really ask for I guess.

Noteworthy: Navigating Cancer

At the beginning of the summer I talked about how I wanted to do review posts about cancer resources and things... and then I just sort of let it drop off. Hypothetically, I'm going to pick back up on that. I also hope that you guys check out some of the links on the left hand side of the page, be it the blogs, the banners, or the websites. Doing everything may in fact be overkill, and I'm starting to notice some repetition on who I'm connecting with, but each place seems to hold something a little bit different, so if one site isn't what you are looking for, maybe one of the other sites is.

Today I want to talk about Navigating Cancer. This is new. Just really got off the ground this January, and all I can say is I wash this were around 5 years ago.

I think this is a fantastic site if you are just getting going with cancer and cancer treatment. There's a lot of traditional networking bits, and suggested blog topics and things like that. But what I like most about it is its uses as an organizational tool, and a way to talk to friends and family.

There are daily monitoring applications where you can say how you are feeling. Records sections to keep record your medical records, and print them out whenever you need them. There's a calendar that lets you schedule appointments and events, and let your people know when things are going on.

For me, I am piss poor at trying to tell people how I'm doing and dealing with cancer. Not you people, obviously, but my people. For,what seem to be obvious reasons to me, I don't give out my blog to my friends and family. Its the only place I feel safe that I can be critical of them. And, I get to vent and yell irrationally without worrying about their feelings.

And then, I'm never sure what is important, what to say, or anything. I think there is even an application here that says what you need right now. This would have been fantastic for me. This is a passive worried about being a burden cancer patient's dream tool. I'm going to passively tell you what I need and leave it to one of you to step up and do it.

Even now, as morbid as it sounds, I'm slowly working on filling out all the discussion sections, for other people, who are just starting out their cancer journey, and putting together other bits and pieces, so that, knock on wood, anything else goes wrong, I can automatically direct my friends and family to the site.

There's still little twicks and tweeks that need to be worked out, but so far it looks like it is running smoothly. Probably the biggest problem it might have is that there don't seem to be a lot of people on it yet to be good resources, and have good discussions. But like I said, I don't think this is necessarily the strongest feature on the site.

So give it a check out, Navigating Cancer

New Years Resolutions

So, now that we are midwayish through January, I figured I'd post a bit about my New Years resolutions. I've never been particularly big on these things, but I've had one this year that is remarkably different than the traditional ones we think of and it sort of directly relates to a side effect of my thyca... I think. I also thought that maybe if I wrote them down and shared them it just might increase my level of accountability.

The first is more of a goal than a resolution: I want to earn at least 175 on the MBE and score at least an 8 on all of my essays. This is of course referring to Bar exam scores. These are fairly lofty numbers, but I really believe if I buckle down and learn the material I can do it.

Second, and more traditionally, I want to lose weight. You may recall that I started working with a trainer, and was keeping up a fitness log on here each week at the beginning of the summer. With the car accident, bar exam, freak welts, and the emotional downturn that accompanied all that, the gym got pushed to the side. But, after Thanksgiving, I started going and running and lifting most days; post New Years, it became far more regular, and I've jumped back into dieting. I'm doing more than I was before, but I think its working out. My realistic goal is to drop to 185, that's were I was when I found out I was sick. I also think I'm going to join my gym's fitness challenge. Its sort of like the biggest looser. Last year my step-dad won it, dropping 62 lbs. between January and May. While I don't expect similar results, I think the challenge would motivate me a bit more... which leads me to the last big resolution:

I want to increase my level of commitment and follow-through.

I realize that sounds a bit vague, but it really is becoming a problem for me. I keep saying I want to do something, and never do. I start projects, that I never finish. I can't seem to stomach the idea of committing to anything. I'm like the Babe Ruth of doing things. I do more than anyone else I know personally, but at the same time I start and never follow-through with more things than any one I know, which makes me sort of unreliable and flighty.

I don't know when it all started, but I don't really remember being like this before getting sick. There's a certain amount of "why bother?" mentality that I've picked up. I've gained strength in some areas of life, especially for trying new things, but lost the self-confidence needed to commit or do anything successfully. I'm not sure if that makes sense to anyone.

There are a lot of little things. Blogging is a good place to start. I said I would blog at least once a week... that has gone... meh... and then if you look back at the number of posts I've started but never finished, you would probably be shocked. Ideas get away from me, or I totally lose interest, or it's so important an idea that I don't want to fuck it up, so I think I'll always come back to it. What I'm even worse at is writing stuff for other people and web sites. It's like I try so hard to get my ideas perfect, and then I just sort of give up. And then I flake out on the job. This actually spilled over into a research project I was doing. Interesting topic, but it was a lot of work for zero money. And I just flaked. I fucked it up, a potential job, something to go on my resume, and I did so much work on it, and just never finished or responded to the last e-mail from my boss. I have no idea whats wrong with me. That's just stupid. Its like busting your ass to build a bridge and blowing it to all hell.

The lack of follow-through can be seen in my inability to make phone calls, return phone calls, schedule doctor's appointments, and even studying. A lot of times I just flat out forget.

Lack of follow-through then ties right in with a lack of commitment. I am a commitment phobe. Ironic for someone who seems to always over commit themselves. Earlier, I was afraid to really apply for jobs just in case I failed the Bar and needed to study again. The fitness challenge; the only reason I haven't signed up is that I'm afraid to commit to something until May. That's a long time to commit to something when my whole world could easily change by then. Too many "what ifs".... What if I get a job somewhere else, what if there's another freak accident, what if the cancer comes back? Because lets face it, Feb-may, not a good time for me to start new things. That's when I do check-ups and testing. That's usually when a bad diagnosis comes in. How can I ask for jobs that start in March if I can be fairly certain that I'll need to be doing thryogen injections and probably an MRI or something along those lines during that time?

Is that normal? For those of you out there also playing the limbo cancer game, do you try to plan out your life on the bad things that might happen, just in case?

Ahhhhhhhhhhhh!

Oh, and finally, I resolve to get a job and move out of my parents house this year.

A Guide on how to Support someone with Cancer

Sort of repeatedly over the past few weeks the topic has come up time and again about how my friends and family support me. Its never been straight out asked, but usually plays in to whatever I'm writing about, and its caused me to take a serious look at how I interact with my friends and family on the cancer issue, and even more revealing, how I handle when friends or family tells me they have cancer. I've also been trying very hard to start seeing things from other people's perspectives, like my mom, who tends to see all the people in her life getting sick as being something that is done to her.

I've always been very careful about how I tell my friends about what's going on. Its awkward. "Hey, so it looks like I have cancer."... "Uh, so it looks like the cancer is back"... "Another round of surgery and radiation, wooo!"... "So yeah, by the way, remember that cancer thing... turns out I"m probably gonna have it for the rest of my life." or god forbid I try to talk about how I'm feeling... "So, I sort of hate my life right now."... Cancer rather sucks"... "I feel like total shit"... I mean how do you react to that? ... "Uh, I'm sorry, don't worry, I'm sure it will be ok and work itself out in the end."

Whallah, there, you've been a caring and supportive friend; there in someone's time of need.... yeah right. Congratulations, you just deferred to the most classic packaged responses known to man. I don't care how genuine you are when you say it, the fact is you are probably talking to someone who has heard it 50 million times, rather than purely upset, they are probably angry, tried, frustrated, and want to yell at the world. Those words, actually make me feel worse. As far as I'm concerned they indicate just how absolutely alone in this I am. You clearly don't get what I'm going through, and there's no indication there you want to learn about it. You're probably even thinking in the back of your mind about how melodramatic I am making huge deals out of nothing... whether that's true or not... I don't know... but its what I think.

And whats worse is that you've made yourself feel better. The fact is friends and family being sick sort of reminds us of just how mortal we are, and how unpredictable life can be. A little self reassurance that everything will be ok seems like its more of our own defense mechanism to keep out the "what if" thoughts. And its what you think the other person wants to hear.

I am guilty of all of these things. Even as a cancer patient myself, I find over and again falling into the same pattern of support. But not so much recently. I've started not giving reassurance as much as seeing where I can help, offering up websites, and an ear if someone needs it.

So after some thought, here it is... my guide and suggestions to supporting someone w/ cancer:

1a. LISTEN!!
This is easily the number one thing people don't do. But if you know your friend well, sometimes just listening to not just what they are saying, but how they are saying it can tell you what your supportive response should be. Am I telling you bad news because I need to let everyone know, or are you one of the first few people I'm turning to because I need you to know now? Am I venting, or am I genuinely trying to figure out how to fix my life. Am I upset, but could be cheered up, or am I really depressed?

If you have any developed social skills, reading through those you can probably see the differences in the emotion behind them. And at the same time you can probably see how many people would just shovel out the generic "It'll be ok" for every single time.

1b. Acknowledge to yourself that you have no idea what they are going through
Like I said, you basically get discredited when you say " It will all be alright" as someone who clearly doesn't have a clue about whats going on.

2. "Man, that sucks"
As weird as it sounds... this is a fantastic initial response. Its acknowledgment of what someone is going through. It's not "OMG I'm so sorry!" which leads to ...

3. Don't tell me your sorry
I don't want pity. That's actually one of my biggest issues. I don't want my friend feeling sorry for me. Unless of course you caused my cancer... then be damn sure I want you to be sorry. And if your aren't, be damn sure you will be once I'm done with you.

4a. Don't give me unsolicited advice
This is uber tied in with listening to what I'm telling you. No seriously, it is. Sometimes I'm asking you what to do. I'm not always asking you what to do. Sometimes I just need to vent. Before you go on to tell me what you would do, what you think I should do, what your Uncle Patty did, etc, try asking me what I plan to do, or what I'm doing. If I'm not directly asking you for your opinion, but you have some insight, say something like, "My Uncle Patty had x cancer, so I can recommend some things he did." or "when I had x cancer, this is what I did." I'm more receptive to advice when it comes in the form of your experience. It gains a little bit more credibility, and feels a lot less like you are telling me what to do. You have to remember that I'm being told by doctor every day what to do. I've done hours of research into my disease, read countless blogs on how to live my life outside of cancer.

4.b Don't talk to me about God
*a slight caveat here, if your cancer friend is religious, then this isn't a bad idea.
But if they aren't, or they don't talk about faith first, you probably want to steer clear. Look at the end of number 3. Its human nature for us to blame things when life isn't going so hot. These things include God. If you ask me, like my dentist did, how being sick has affected my relationship with God, don't be surprised when I give you a blunt answer. Talking to me about God's plan, or maybe how I should find faith to help me through isn't the best advice. Faith is harder when you've been told the "C" word... instead try:

5. Talk to me about what practical things can be done
Ask me about the science. This goes after the listening stage. Telling me everything will be ok bad, but sitting me down and making me figure out what can be done can be good. Make me look at the science, let me tell you the plan of action. And if I dont' have one, work it out with me... unless I'm in "nothing's going to work, everything is bull shit," mode... then I probably just need to sit and yell for a bit.

6. I need to talk to someone who is not my best friend
This doesn't always make sense to people. Honestly, it doesn't always make sense to me. But it goes with not wanting to make someone close to you hurt or worry about you because you are so close... I think. But sometimes I just need to talk to someone that is a little more detached. Maybe someone who I was close with then fell out of touch with pre-cancer. Someone who can talk to me about something else, and remember who i was before. Who hasn't sat and watched me change. Who won't be emotional if I need to lay bad news down.

7. Don't be surprised or hurt if I push you away
This is sort of a foil to number 6. If your in my closest group when I get sick, you just have to bare with me. We have expectations of our supporters... they are rarely met, hence this set of guidelines. We don't want you to feel hurt. We also change. Sometimes having our friends that remind us of who we were just before getting sick is a little harder to deal with.

8. Be careful how you offer help
This is probably the second most important thing on here. No matter what you should offer help. I'm always surprised by how many of my friends don't do this. Which then just tends to build up the concept that me being sick is an inconvenience to them and their lives, resulting in me feeling alone and sort of shutting people out. Less close friends are fine just saying, "Let me know if you need anything." But again, this is a really just generic phrase. You're saying it because you should, not because you really want to help.

Take a more active approach. "What needs to be done?" or "What can I do to help?" If you just leave it up to me to contact you... that isn't really helping, and chances are I will feel far more like a burden. Planned, strategic help. That's what we as cancer patients need. Or just tell me what you are going to do. "Do you need someone to go with you to the doctor?" "Well, no... I mean, it would be nice, but you don't have to if your busy." Vs. "Ok when's your next doctor's appointment, I'll go with you." Do you see the difference?

9. We don't like to ask for help
Its a humbling experience when we ask for help. Its the sign that we have reached our limitations. We don't want to inconvenience you. You should recognize that. If I've actually asked you for help, its because I genuinely need you. Nothing is worse then asking for help, and the person at the other end not realizing its important that they be there. And if you genuinely can't you phone tree, and you find someone who can.

10. Random acts of Friendship
We don't want your advice or your pity. We don't want to solicit you for your help or friendship. We are tired, and sometimes things like interpersonal relationships are what suffer. We need you to pick up some of the slack. Don't always wait for an update, pick-up a phone and call me. Send me a card to know you're thinking of me. Just do something nice for me. Always remember that the hardest impact of cancer isn't the disease or threat of death, its the emotional impact. We feel alone. I feel alone. Whether it is rational or not, I need you to show me that I'm not entirely alone.


And that's about the general gist of what you should and shouldn't be doing with someone who has cancer, and what you should expect. As a final note, remember that we cancer patients tend to be very emotional, whether we show it or not. And I can't emphasize enough how much we feel like we're alone in how we feel and what we are going through. Even with other cancer fighters, each battle is different, each battle is personalized; no one actually has the same experience. But we all need the love and support from our friends and family.