Happy Cancerversary to Me!

   

 
     This week marked a year since the day I was diagnosed with the Big C...I had planned to write something fabulous on the actual date, November 10, but things got a little bit, uh...hectic...here in the ol' USofA.  I had some other things on my mind that pushed that milestone out of my head.  
     Which is perfect evidence of how good I have been feeling, of how much having cancer/being a cancer patient/being a cancer survivor is NOT in my brain in my day-to-day life. 
     My sister says this is my superpower: the ability to compartmentalize traumatic or just extremely unpleasant episodes and news in my life, and either tuck those things away in a far corner of my brain or, in some cases, completely erase them from my memory.  
     I don't know if this is necessarily always a good thing.  
     Sadly, it is also apparent that I will never merit a snazzy cape or shield because this superpower cannot be controlled--I cannot summon it at will.  (Otherwise, I would have kicked that power into high gear this week.  I'm just sayin'.)
     So much has happened in just one year.  From diagnosis through treatment to Seal of Remission to now.  My daughter graduating high school and entering college.  My son starting high school.  My husband becoming a part-time East Coast resident.  Extended family having babies.  My cat having a wee little cancerous tumor removed.  Me having ulcers (they think that's what all the pain was about--I saw the pictures, ewwww).  Me losing hair.  Me growing hair back.  Me losing weight.  Me gaining weight back.  
     The point is, it's not that much different from a lot of people's lives, really.  Things happen, good and bad, and you keep moving forward, and you get through the bad stuff and you celebrate the good stuff where you can.  No reason to complain because, in comparison to others, I'm living an awesome life.
     Anniversary dates are a time for reflection, so...at the risk of stepping squarely into a cliche, cancer brought bonus features to this past year's journey that, in the right frame of mind, I can honestly say serve as substantial consolation prizes for the unvarnished turd that is cancer and it's treatment.  I'm only sorry these cancer party favors don't get distributed among my entire cancer-fighting team at large, who certainly deserve the silver-lining perspective as much as, if not significantly more, than I do.

Things I Always Knew But, Because of Cancer, Am Finding Much Easier and More Natural to Embrace in My Life, In No Particular Order

     
You must empower yourself to be your most dedicated health advocate.  It sucks.  It requires time and effort and energy.  But don't accept that there is "nothing" wrong if you don't feel well.  

Long hair, don't care.  In fact, no hair, don't care.  Doesn't matter.  Enjoy having it, or just don't have it, it's all good. 

Stop saving the "good" stuff for some unnamed "special occasion."  Every day you are here is a pretty darn special occasion, really.  The good plates, the pretty sweater, the bottle of champagne that's been chilling in the fridge since you don't even remember when, the pair of earrings passed down from your grandmother.  Seriously.  What are you waiting for?  

Enjoy the things you have, or move them along to someone who will enjoy them or use them.  I had a profound sense of stress during cancer treatment related to the fear that, should I die from cancer, my family would be left to sort through the massive amounts of crap that I have accumulated.  I felt this intense pre-potential-death guilt about it.   I pictured my family's grief interrupted by angry exclamations of What the f***?! as they waded through endless piles of things and, because I was dead of course, I would not be able to defend my need to hang onto, for example, those beading supplies from 15 years ago when I indulged in a short-lived hobby that hadn't been used since.  As if by magic, all the crap that had managed over time to fade into a misty and undemanding mental background moved sharply into focus.  This is NOT to say that I have been successful at streamlining my surroundings into a shining example of stark, clinical, modern chic--but I am slowly chipping away at things.  It makes me feel good to go through things and donate or give to a friend who appreciates it.  My desire to acquire things has diminished greatly. Don't get me wrong--I looove stuff, all kinds of stuff.  I like to look at things and think "that's so cool" and imagine having them but, when it comes down to it, actually possessing most (not all) of these things isn't something I really want anymore.  It becomes mental clutter and makes stress.

Related to the above, I think this change in my relationship with things goes hand in hand with my experience during treatment of my relationships with people.  It was all the people in my life, friends and family, who helped me through the experience.  I think having cancer enriched my relationships because it elevated them to and cemented them in the level of importance and priority they should always occupy, something it is too easy to forget when I allow all the other brain-clutter of life to occupy my thinking.  The farther I get from cancer treatment, the louder the extraneous brain noise gets and the more it intrudes, but at the very least I am aware of it and I can work diligently to silence it.  Maybe I should just call this the La-La-La-I-Can't-Hear-You lesson.

It is really super cool to get mail.  Meaning an actual card or note or straight-up multi-page letter sent through the US Postal Service with a stamp.  People were incredible and sent me lots of it.  Having a hand-addressed envelope pop up in a stack of bills and junk mail is just the most awesome thing ever.  I'm going to try to send more mail.  It makes the person receiving it feel good.

Avoiding having people over to your house because "my house is a mess" is stupid.

Tell people what they mean to you.  There is no lifetime maximum on saying I love you to someone.

Be as kind as you can.  You just don't know what people are going through.  Until I was bald, no one would have suspected I was dealing with cancer.  Hopefully I wasn't rampaging through my world acting like a complete witch but, if I had been, I likely would have appreciated a little bit of slack being given under the circumstances.

Sometimes scrambled eggs are the best food ever.  Same for steamed rice with butter. 

 If singing makes you feel good, belt it out even if your voice sounds terrible.  If putting on "that outfit" makes you feel sassy, then wear it out the door.  If you think the cashier has beautiful eyes, say it.  If the lady ahead of you in line is rocking a fierce look and, by the way, is wearing shoes to die for, tell her.  If you need to apologize for something, or even if you suspect you might need to apologize, do it.  If bringing up an "awkward" subject will truly help you or someone else, put on your big girl panties and stop avoiding it.  If bringing up an awkward subject will be of no benefit but merely scratches some mental itch you're having, then shut your mouth.  Don't be afraid to look silly or stupid or be the subject of derision. Live your life.  Be happy.  A stranger giving you the stink eye isn't going to kill you.

NED Is Good For Me!

     Important things first:  My September PET scan showed no evidence of disease.  I am still in remission.  Unless I start to experience symptoms of lymphoma again, I do not have to go back for a scan for 6 months!
     We interrupt this program for a moment of jubilation:

Note the adorable Calvin Butt Wiggle. 

     Aaaaand...we're back.
     Things were going well, I was getting back in the groove of regular life, and then I started feeling this pain in my abdomen.  At first it was insignificant enough to be more of a huh, that's weird acknowledgement, but as time went on it became pronounced enough that it was a real distraction.  Over the span of two weeks it got to the point where Advil and Tylenol just weren't having any effect, and the pain was radiating from the upper right side around to my back.  Not a fan, I can tell you.
     So during these two weeks, I was working very hard to resist the lure of hypochondria and catastrophizing.  When the pain increased and became constant, I relied on my Google medical degree to ascertain that this pain is located in the area in which one might experience gallbladder pain.  And I certainly fit the profile of the 3 Fs:  fair, fat, and forties (okay, I'm fifties, but whatever).  So I tried not to be too worried about it, but I can't say that the spectre of some hideous tumor wasn't lurking at the corners of my brain.  Which is ridiculous:  the average person doesn't immediately leap to ohmyGodI'vegotatumor with random aches and pains.  I rationalized that, because I was due to have my PET scan sometime in the month, I would be able to just sit tight and the scan would reveal if this was cancer.  If it wasn't the Big C, then I could seek attention in addressing this more mundane medical anomaly.
     The problem was that the approval for the PET scan was not forthcoming.  I don't know if this was entirely the insurance company's fault.  Seems like, being a person in remission, I'm not necessarily on the priority list at the cancer center, so there was really no one cracking the whip of urgency for those responsible for following up with the insurance company to obtain authorization.  Hard to say.  Perhaps it was a combination of both parties.
     Well, I waited as long as I could.  I began fantasizing about grabbing a bottle of hydrogen peroxide and an X-acto knife and just having at it in the bathroom.  Also, the idea of taking a swim in shark-infested waters and allowing a hungry shark to chomp an exact semi-circle out of my right side seemed really appealing.  
     So I called my primary care...yes, THAT primary care doc (I'm still working on finding a replacement).  No open appointments for 7 days.  But this is two weeks of worsening abdominal pain, is there no way to make an earlier appointment?  Okay, the nurse practitioner has an opening in 6 days.  But I'm welcome to keep calling back to see if there are cancellations.  Uh, don't you just put me on a cancellation list and call me if an opening comes up? No, we are too busy to do that.  Silly me, what was I thinking, of course I'll call you every hour on the hour like a crazed stalker and ask about cancellations, that's a much better way to go about it, you're totally right, my bad.
     So I took the appointment with the nurse practitioner.  And I thought maybe I could stick it out.  But I couldn't hack it.  At the urging of my hubs who was scheduled to leave town, I ended up in the ER. And I was there for almost 7 hours.  I guess my Google med creds weren't too far off because they did an x-ray and ultrasound of my gallbladder.  And they came up negative.  After a shift change (waiting, waiting, waiting in a room, waiting, waiting, okay, you've been to the ER, you know how it goes) a new doctor comes in and says that I can go, there is nothing wrong with me.  Whaaaaa?  The gallbladder is not enlarged.  Probably a muscle strain.  But this has been going on for two weeks!?!  Oh, really? Hmmm. (Wow, did you not read the notes?  Just take a second before you walk in the room, really, you can make a much better impression on me by doing that.)  It's radiating to your back?  Pneumonia can cause that pain.  I'll order a chest x-ray.  (Did I somehow miss someone listening to my lungs?  No stethoscope has made an appearance here.  Have I mentioned any other symptoms that might correspond with pneumonia?)
     I should have spoken up.  I think the pain and the shock at the possibility of the doctors just kicking me loose with a so sad, too bad attitude about the pain made me desperate enough to grab onto the slight glimmer of medical curiosity this doctor was showing like a life preserver, even if it didn't make much sense to me.
     Waiting, waiting, waiting.  Finally, I got dressed.  I'm cranky.  I'm feeling like they've forgotten I'm here.  Lost in the shift change.  I'm thirsty (they won't give me any water), and I'm hungry (no breakfast, no lunch), and I'm sick of this.  Someone comes in the room to take vitals (oh, so you DO know I'm here), and I ask when the results of the x-ray will be available, how much longer will this take, I have to pick up my kid from school, what's going on?  So that guy leaves and in about 10 minutes the doctor comes in.  Tells me that they see something on the x-ray but they don't know what it is.  Do I want to come look?  Well, yes, I do.
     So he's showing me my lung and explaining that there is mystery crap in my lung.  Well, that looks sort of like pneumonia.  But that looks sort of like lymph nodes (red alert, red alert, danger Will Robinson), and that stuff, well, I dunno what that is.  But he starts patting me on the shoulder and starts getting really super duper nice to me, and rubbing my arm, and asks me when I'm going to be following up with my oncologist, and AAAAACCCCKKK!   STOP BEING NICE TO ME! The ER staff is getting all ooey gooey nicey nice and I'm expecting to hear a mournful trumpet playing Taps, and holy crap is my cancer back?!?  
     So this doctor says he's just going to put down a diagnosis of pneumonia, give me some antibiotics, and I should definitely follow up with my oncologist.  Frankly, I'm a little discombobulated at this point, so instead of saying, "What the hell are you talking about, you're 'just going to put down something', you don't know what it is, why would you give me meds for it, why don't I just hang out a shingle and become a doctor, I can just put down anything I feel like.  Oh, is today Friday, well that's Mad Cow Disease Diagnosis Day in my office," I only ask what they are going to do to help with the pain I came in with.  Oh, yeah, THAT...here's some oxycodone.  Which made me think that if I were a prescription med junkie and had 7 hours to burn, I might have thought it worth my while to say ow-ow-ow this hurts and sit on my ass in an ER if I could walk out with 20 tablets.  What the hell?
     I drove straight to my oncologist's office, gave them the report, and wrote a note for her that summarized this nonsense and said, if nothing else, maybe something hinky on an x-ray could shake loose an authorization for my follow-up PET scan.  Before I made it home I had a message that I had an appointment with her on Monday.  So I made it through the weekend with my hard-earned drugs, saw her on Monday, and she was not happy.  She said she hates when this happens, when ER doctors don't know what they are looking at and freak her patients out.  She explained that, according to the report, all the funk is showing in my left lung.  Okay, so none of that crap the ER doc was pointing to was anywhere near the pain I'm having.  And she said that there is likely going to be funk showing in my lung forever from the scar tissue and the radiation.  And that there is another gallbladder test that should have been done, and yes, maybe this will get the authorization for the PET, and that I should calm down and she's not worried about the lung.  
     Whew, thanks for talking me off the ledge, doc.  See, I thought I was all good about this stuff, but not really.  The paranoia just lurks.  Waiting for something to set it free.
     Anywho, this story is going on far too long.  I apologize.  Had the other test.  Nada.  Talked with a surgeon who said I had all the symptoms, had the pain in the right place (seriously, OW, stop pressing there!), and that 70% of people who have negative tests and present with gallbladder symptoms are shown to, upon removal of said organ, have something hinky with their gallbladder.   But he also said he has had personal experience with removing a gallbladder from someone with all the symptoms and negative tests and...nothing is wrong with the gallbladder. So...it's up to me.  I HATE that!  I don't want to be the decision maker, I want science to make the decision for me!
     So I have a surgery date set.  Just in case.  In the interim I have another consult with a GI doc to discuss other possibilities and to see if I can get an "I concur with the surgeon" out of her.  My pain has lessened dramatically, which is wonderful (I don't really like to be on pain meds all the time...cuts into my evening glass of wine consumption).  But the pain is still there, just a little hey, don't forget about me kind of poke in the gut.  
     So we'll see what happens.  I do have a quasi-medical, unsubstantiated feeling that, if I have a gallbladder that goes in and out of states of irritation and inflammation, maybe residing in my guts at a low level of inflammation most of the time, but nothing horrific (like it is now...I can feel the slight ow, and if you poke it I'll give you big OW and shove you, but it's not at the forefront of my mind), this is not good for my body.  Specifically, if my immune system is allocating resources to manage chronic inflammation, it is perhaps not going to be in the most excellent shape to keep cancer away.  Given the whole immune-system connection with lymphoma.  So, that's just where my brain is.
     It's too bad gallbladders don't weigh 10 or 15 pounds...it would make the decision to remove it much easier for me.

     

Cankle Head

     It has been so long since I've returned to this page...a sure sign that I'm doing well.  When you have places to go and people to see because you don't have treatment appointments and doctor appointments and you don't feel like hibernating all the time, who wants to be blah blah blogging, right? Nothing to say on a cancer blog when...you don't have cancer anymore?
     Friends have suggested that I keep writing about things other than cancer, but ongoing cancer treatment provides a fairly inexhaustible supply of subtopics, meaning: I really didn't have to work very hard to find something to say.  Maybe I'll take a page from other cancer blogs...each year that I get my clear PET scan I'll check in and share the gold-star moment with everyone!  (And in case you are wondering, I have to wait until sometime in September for my PET...my doc wants 8-12 weeks after last radiation.  And of course I will share the happy news once I get results.) 
     So last I wrote, radiation treatment was over and that bell was rung (I'm speaking literally...a much more petite bell than the one at chemo...more aesthetically pleasing and yet not QUITE as satisfying as making the uber-racket that the Chemo Room ship's bell allowed...)  Let's hope I do not have the opportunity to go through this again, because there's a fine line between enjoying a celebratory moment with family and becoming a hopeless bell-clanging attention whore.
     As soon as I got cut loose from radiation, I was able to travel out of state to spend time with family...got to have both West and East Coast experiences this summer, which I haven't had in a long time.  Things got pretty busy this month as my son began high school and my daughter moved into her dorm and started college--milestones for both kids, and I'm excited to see them move forward with confidence to start these next phases of their lives.
     Throughout the fall and spring I felt constant guilt at the Big C competing for the family focus that should have been, in a non-cancer life, unwaveringly on things like, oh, I don't know, college acceptances and graduations maybe?  It pleases me to no end to see my kids doing so well after going through this little drama.  They were champs.  
     While I was visiting out East I was fortunate enough to meet Redthreader, and she gifted me with some handmade awesomeness!  I'm fairly sure she's one of those people who, if she sees something cool, says to herself, "Hmm...I think I can make that."  And then she learns how to do it and flawlessly executes whatever it is that strikes her fancy.  (I'm sooo not one of those people.)  One of the goodies she made is this etched baking dish:

     The big question is:  How in the world did Redthreader know that my sister and I have had an ongoing dialogue for years about working to be a 2.0 version of ourselves? (Methinks Redthreader must have some mad psychic skills?)  Being "the 2.0" is about trying (and failing and trying again) to reflect on and pay attention to how I think and speak and act.  The ultimate goal is to be aware of myself as the thoughts or words or actions are forming, to enable myself to make a better choice.  Before the damage is done, so to speak.  It doesn't matter that the process never ends.  Or that I forget on way-too-many days.  Or that I'm endlessly shutting the barn door after the horses (cows? farm creatures?) are already out. The point is to become conscious of sliding into autopilot and to drag myself away from it. To strive to achieve that goal, no matter how many times I fail in the attempt, is to be a 2.0 version of myself.  
     It is a cliche, I know, but the Cancer Awareness Gift was real.  At least for me.  Having cancer and going through treatment gave me a tremendously compelling reason to focus inward, to appreciate the people in my life and the world around me, and to stay focused on what is positive and make those things the priorities.  I got to live in this bubble in which the regular bullshit that can so easily hijack my mind couldn't penetrate.  And that was amazing!  It wasn't that I stopped caring about anything but myself--even though, as I read this, that's just what it sounds like.  But my brain would instantly assess and discard things that, in the scheme of life, just didn't matter a whole heck of a lot--and it did this without me being aware of it.  It just happened.  This cancer change was an intense personal experience, and it was a more complete and all-encompassing mental shift than I've ever experienced before.  My sister calls it being in Small World--this place you go to live in your head when you are dealing with protracted (medical/other) crisis.  You learn a lot about yourself when  you reside in Small World.  And Big World baloney just doesn't get to follow you there.
     My hope was that this magically delicious new way of being would remain post-cancer treatment.  In perpetuity.  Lessons learned.  Done.  Like that adorable Rio Olympics weightlifter:  You drop that weight on the mat and do a little dance.  (Did you not see him?  Stop and Google him right now.  Oh.  My.  Goodness.)
     However, what has actually come to pass is a little different.  Yes, after chemo there was a honeymoon period during which I  continued to experience the world around me with my Small World Bubble Attitude--it was amazing.  I felt this lightness of spirit and nothing stressed me out.  All the little things just didn't bother me.  Everything rolled off my back.  Cue the choir of angels:  I'm a different person! Whoo hoo!
     Then one day I was driving and trying to merge onto the freeway.  Speed limit 65 mph.  And this car in front of me was moving down the onramp, not only having a hard time maintaining the lane (texting, maybe?) but also doing so at a speed maybe 20 mph under said speed limit.  Soooo sloooooow.  Come ON! Let's go!  Oh my gosh!  Just drive, do you know how to drive?! Are you kidding? And now you're putting on your brakes?!?  What?!?  Idiot!  Merge, merge, MERGE already!!! AAAUUUGGGHH!!
     Whoa, Nellie.  Who the hell was that?  She does NOT live in Small World!
     I'm not saying that I think it's possible for me to be this saintly, unperturbed, spiritually evolved being who never gets upset about anything.  Puh-leeeeeze.  That ain't happening.
     But should I spike my blood pressure about how some yahoo is driving?  Really, that's the thing that's going to put me over the edge? Out of everything under the sun?  I can't control how this person is driving.  But I can make a choice to control myself.  Do I really want to pop a vein over this?  Save the emotional investment for something that merits it--and traffic definitely doesn't  rate as a high priority.  Why do I want to give some stranger in a car control over my headspace?  
    I thought the 1.0 me was long gone.  I can't say I was pleased to hear that me coming out of my mouth.  A blast from the pre-cancer past.
      Another example:  During the months of chemo, the constant voice inside my head that would always tell me how fat I am, how terrible I look in some outfit, yada yada yada over my appearance, the voice that's been with me for my entire life (well, okay, since 4th grade, probably)--that voice fell silent.  I didn't hear a peep from it.  I thought it was dead and gone.  Halle-flippin-lujah!  Ding-dong the witch is dead!  Excellent!  You have no idea how much I HATE that voice. The voice that wants me to live every moment in a place of self-consciousness and low esteem, the voice that wants me to have no confidence and feel unworthy.  Based on how I look.  Because that's more important than my character, right?
    All during cancer treatment I wore what I wanted to and didn't give a thought to how I looked in comparison with others.  I just wore what made me happy and felt good about myself for just being around to wear the damn clothes.
     Well, here I was, living my life after chemo, and suddenly that familiar voice piped up again.  It wasn't dead after all--it just hadn't been able to penetrate the Small World bubble.  Now, you know I was totally down with my bald head.  I was diggin' it.  Easy maintenance, nice and cool, great for hats, no hair covering fun earrings...I'm a big fan.  Well, I caught a glimpse of myself in a mirror and that obnoxious voice said, "Wow, that's some big fat head you've got there.  On a fat neck.  Your head sitting on your neck looks like a cankle.  How ugly is that?  Wow."  
     Is everyone familiar with the cankle?  "A leg with no clear definition where the calf ends and the ankle begins."  Yet another thing that those of us with body-image issues can find fault with.
     So I finished chemo treatments for good and this is what my brain conjures up?  Because that's important?  I'm alive, for cryin' out loud!  Doesn't that matter more than having a cankle head?  I mean, why should I even care if my head/neck combo is a cankle?!?  To quote the noted philosopher Carrie Fisher:  "My body is my brain bag, it hauls me around to those places and in front of faces where there's something to say or see."  Enough said.
     It comes down to all these little moments in my day.  All the opportunities to make a better choice than the one that, sadly, just comes naturally too much of the time.
     So I can either feel insulted and uncertain when the woman at the cash register--who, no lie, looked very much older than me--asked if I would like the 60-years and older senior discount, or I can find the humor in that:  Me, slowly, with my head slightly cocked to the side:  "Well...I don't know.  If you think I LOOK like I'm 60, then go ahead and give me the discount."  Rrroww!  Hisssss!  I dare you!  (Trying. To. Find. Humor. Trying.  Failing.)
     Or:  My primary care doctor, while I'm explaining how my health is now that I am finished with treatment, interrupts several times to clarify my address and phone number and pharmacy location so he can be super-efficient and type it in his laptop instead of listening to me.  After I've told him about all my hot flashes, night sweats, and joint pain, he says cheerily: "Well, I see your weight has been trending downward." At that moment I had some choices.  I could get up and punch him in his clueless face...or start quietly seething...or I could laugh out loud and say: "Uh, well, that would be the CANCER!"  And then start looking for a new doctor.  I chose the latter.  Two-point-oh.  Bam!
     So although I feel as if I am, more frequently than I was before I had cancer, looking at situations through the rosier 2.0 lenses, increasing those moments really does require work. I know that even the best relationships take work to remain healthy and to evolve and grow, and this is a relationship between me and the world around me.  I would have been much happier if this had been a permanent shift that required no further thought or effort on my part.  Damn.  I'm lazy that way.  But having had a glimpse of what is possible is a motivator to keep trying.  So I don't have too many two-point-oh-no moments!
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Independence Day

      Yes, we just celebrated American Independence Day--but I think I'm also celebrating independence from the constant doctor and treatment visits and my body's independence from cancer.  It's a bit selfish of me, I know, to ride the coattails of the Continental Congress like that.  But I do favor doubling-up on celebrations where possible!  More food!  More fun!
     Two days after my final radiation treatment I dragged myself back (with a mixture of excitement and trepidation) to my sorely-missed Jazzercise class!  As a post-chemo encouragement gift, my sister had sent me cute workout clothes (finding my selection of workout wear on her visit during my exercise hiatus to be, well, lacking in fit and style, I suppose).  I used the lure of that sassy exercise outfit to motivate me to haul my wobbly bottom out of the bed I so dearly wanted to stay in.  I felt that I was missing out for all those months on something good with my class, but I had forgotten how very much I enjoy being in the company of those energetic women and having fun moving to the music!  Awesome instructor, awesome ladies, everyone working to stay strong and have a good time while doing it.  Let's be honest--the routine kicked my butt and hard!  I had no doubt that it would.  But what was so exciting for me was how I felt during the workout.  I was sweating up a storm (I truly think I'm the sweatiest person there--always was--and not because I'm working out the hardest...I'm just really gross that way).  I was huffing and puffing and tired out by the end. But I was not feeling the tight, constricted sensation in my chest that I had somehow gotten used to feeling during class.  It wasn't a feeling I had always experienced...but because it came on slowly, increasing incrementally, I think I just got used to feeling that way and rationalized that it was a "gee, you're getting older and you must be more out of shape than you thought, you should work out harder and get in better condition" kind of thing. 
     What I hope is that I will remember the before and after feelings so that I can remain aware of my body and be proactive when things aren't normal.  Thankfully my voice was the symptom of something gone wrong that I couldn't ignore--I had successfully managed to explain away fatigue, shortness of breath, wheezing, and that constricted feeling in my chest that were occurring months prior to that. 
     I'm not trying to spread a message of paranoia.  But I do think it's worth a mention that most people I know tend to brush off persistent symptoms until they become chronic and, once chronic, simply mentally absorb those conditions as part of the way they "normally" feel.
    So when you have aches and pains, a cough, fatigue unconnected to a change in routine or lifestyle, it makes sense to use ice or heat, rest the area, take pain relievers, or whatever is appropriate.  But if you've been doing that for 2 weeks and the situation hasn't improved, well...maybe you might think about getting checked out.  And, if a doctor says I don't know what that is, you're just getting older, it happens, whatever and doesn't seem to be the least bit curious as to the cause of the symptom, maybe you should talk to someone else.  I'm just sayin'.
     Speaking of all that, in following the recommendations of the ENT, I have experienced an improvement in my ear and neck pain.  It hasn't disappeared completely, but it is much less painful than before.  So the teeth clenching seems a likely culprit.  I imagine myself with some mouth guard in combination with my CPAP mask and my glasses with the super-thick lenses before bed..things don't get any more attractive than that, I must say.  Unless maybe you fancy a look reminiscent of a deep sea diver?  Surgical patient?  Life-sized science experiment?  Hey, good lookin'!  Mmmrow!!  Hubba hubba!

     And now for something serious.  I know I said it was my personal Independence Day.  But I want to acknowledge my bottomless thanks for all the people I have depended on these past 7 months.  From the moment of my diagnosis to the last day of treatment, I have been absolutely astounded by the steadfast support, encouragement, and assistance that a huge network of family and friends has provided to me and to my family every step of the way.  I have the most amazing, massive, and enthusiastic cancer-beating team--virtually and in person.  How could I have done this alone?  Impossible.  I am forever humbled, forever changed for the better in being the recipient of such limitless human kindness and generosity.  I hope to be able to pay it forward in kind.  Thank you everyone.

    
      

Shut Up and Eat Ice Cream!

     Last radiation treatment is done!  My cancer treatment is officially FINISHED!  Seems like we began all this a long time ago, and I'm thrilled to move forward as a FORMER cancer patient. 
     It was a little bittersweet to say goodbye to the radiation techs who have been so kind to me this past month.  What a lovely group of people--they took very good care of me and definitely made me feel like a person and not a patient.  So once again I feel very strange hoping never to see again some people that I've grown to like very much...maybe I'll run into one of them in the grocery store sometime, but I hope never to be seeing them in their professional capacity again.
     My family came with me to the final treatment and, to mark the occasion afterward, met with another friend for some celebratory ice cream.  I went all out--no cone for me, baby, bring on the sundae!  I then went home and slept off the ice cream hangover for several hours.  And now...well, now it's all about shaking off the radiation fatigue, getting back in shape (slowly but slowly), and trying to move forward without perpetual fear and anxiety of recurrence.  I just want to be my regular (weird?) self, not the cancer spaz I've been for the past 8 months.  Thanks to Team Andrea, I'm done. We made it!  Whoo hoo!

Vanilla ice cream, bananas, homemade almond toffee, whipped cream, and salted butter caramel sauce
in a waffle bowl.  Oh yeah!  You know you want some!

     I am in the process of rescheduling the follow-up with my hematology oncologist who will give me the plan for future appointments with her, blood work, and possible scans.  She'll be following me for the next 5 years, but we just need to work out the details of how often and what her preference for scanning is compared to my preference for scanning.  I'm a fan of scanning if the blood markers show hinky levels, or scanning if I am experiencing chronic symptoms that fit the description for lymphoma.  I'm not such a fan of routinely scanning every certain number of months no matter what, and the latest protocol doesn't support that approach either.  But we haven't had the opportunity to discuss it yet.  Anyway, knowing that I'll be seeing her on a regular basis will do a lot to stave off the general recurrence anxiety, I think.  It will just be strange to go from being followed by so many medical professionals so intently for so long to being "on my own" for the most part.  But I'm looking forward to getting used to it again. 
     I did see another ENT about my ear pain, and he checked me out and said that it seems like classic TMJ symptoms...however, I don't seem to have TMJ.  He said my teeth don't show evidence of grinding, but it is possible that I'm clenching my teeth at night.  He said that, having gone through all this cancer treatment (which his wife had gone through with breast cancer), it is not uncommon to manifest symptoms of stress after treatments are finished, because while you are going through treatment you just kind of strap in and hang on for the ride and don't necessarily have time to get all anxious about what's going on.  Now, I can't say that I feel particularly stressed...except about the ear pain...but this sounds like a chicken vs. egg discussion. 
     Anywho, he has recommended a protocol for me to try for a week to see if I experience any kind of improvement.  If I do get some relief, then his supposition is likely correct, and I should tag up with my dentist.  If I don't experience any measure of improvement in the pain, then I am to contact him again and we would do a scan of my neck.  He feels it would be unlikely that the cancer would be back given the time frame from the last clear PET scan and cannot feel anything in my neck from the outside, but he realizes that, if following this process doesn't change my symptoms, that it requires further investigation to determine what is going on.
     So really, I've got to ask:  Other doctor and ENT, was that so hard?  I mean, it's not as if this doctor did anything different in his examination.  But he actually communicated with me, gave me something to try, and then laid out a plan for a process of elimination.  Why did I have to go to three different doctors before one seemed interested in assigning a reason for the pain, giving a specific protocol for alleviating it, and presenting a plan of action if it didn't work?  Those three things don't seem to be so wildly outside the scope of a doctor's job description.  Anyway, enough of my venting for now.
     The routine for the week is this:  Apply heat three times a day, take a buttload (600mg) of an anti-inflammatory three times a day, and rest my jaw (meaning don't talk extensively, stay off the phone, play charades?), and eat a soft food diet for a week to minimize chewing. 
     So really, I think that boils down to him telling me to shut up and eat ice cream, don't you?  That is what he's really saying, isn't it?  Not talking is hard for me, I'll admit.  Anyone who knows me knows that getting me to shut my piehole is not easy, but ice cream?  Really?  Okay, twist my arm, it's doctor's orders, I GUESS I can eat ice cream if you insist!
     Oh, you say there are other soft foods that provide healthier, more well-rounded nutrition?  La la la la I can't hear you.
    

Paranoia the Destroyer

     It's looking to hit 120 degrees here today, so I am hiding out indoors, hoping the electricity doesn't go out and the air conditioning and ceiling fans keep on keepin' on.  I had plans to run a few errands and, faced with prospect of feeling like I live inside an Easy-Bake Oven the moment I step out of the house or the car, I rationalized that there was no errand that couldn't be put off until another day.  I am currently sitting directly under a ceiling fan and pouring sweat from an ill-timed hot flash. Can I get an Amen from all the mature ladies? Amen!
     I have only 6 more radiation treatments to go before they cut me loose.  Even though I have had an easy time of it (with the lower dose and fewer treatments than, say, the breast cancer patients), I will not miss the daily trek to treatment.  I have an occasional cough and I'm a little bit hoarser at times than I've been in the past, and I am feeling pretty tired late in the afternoon.  But I can't say my fatigue isn't from poor sleep at night (menopausal hormonal fun) and perhaps a wee bit of depression creeping up on me.
     I remember that "I don't want to get out of bed feeling" from bouts of depression in the past, and this is a little like what that feels like.  Having experience with this, I'm determined to make sure I'm eating healthier than I have been and I'm going to try to motivate to exercise (c'mon endorphins!), even when I want to blow it off (internal whining:  It's too HOT to exercise! Waaaah!!).  I had hoped to get my out-of-shape booty back to Jazzercise, even though I will be dreading the huffing and puffing and trying not to pass out in the back of the classroom, but I can't get to my class and then get up to radiation in time.  So once my treatments are finished, I really have no excuse.  I actually had a dream last night that my Jazzercise instructor was grilling me about why I haven't been back to class, and I was feebly trying to float all my excuses her way.  And her dream incarnation wasn't buying any of it.  Damn.
     Depression or not, I need to get back in shape.  This many months away from a consistent schedule of exercise isn't doing me any good.  And really, although I still harbor a remnant of the fantasy that exercise will make me taller, younger, and thinner, I realize that exercise is about health, and the appearance benefits are just gravy.  My motto:  Ten squats a day keep assisted living at bay.  I mean, that's what it's all about, right?  You need those quads to get you up out of a chair or off the pot. Sorry to be blunt. It's quality of life.
     Sadly, I had my last visit with Dr. Ray Donc; he is scheduled at a different facility on the day of my last radiology oncologist check in, so I will be seeing someone else.  It is a strange feeling to regret not seeing him again, even though seeing him in the future would mean that I have cancer again, and I can't  honestly say I would sign up for that trade off.  But Dr. Ray Donc is really the gold standard for doctor/patient communication; I don't know if it is a skill that can be taught, but if it can, he's the one who should be teaching it.
     I'm doing my best to keep my anxiety in check regarding a little issue I'm having.  When I returned from my trip to Kentucky, I had some inner ear pain, kind of like when you have an ear infection.  And along with the ear pain was some pain in the side of my neck.  So I waited a few weeks and then went to an urgent care; that doctor said I had no infection and recommended some allergy spray and a decongestant.  After a few weeks of that with no improvement, I went to my ENT.  He said there was nothing wrong and recommended taking an anti-inflammatory and using warm compresses.  He didn't seem too interested in finding out what was causing the pain and told me that, if it got worse, I should come see him again.  Well THAT wasn't very satisfactory.
     I really don't think this is something horrible, but because it is all on the left side (same side as the tumor was), I have this irrational fear that it's a lymphoma tumor growing in my neck and pressing on nerves.  There is nothing to support this fear.  It could be general inflammation causing problems, perhaps related to the joint pain I'm having.  Who knows? It doesn't seem to be responding to any over-the-counter meds, and I'm thinking that maybe some acupuncture could help with the pain.
     But I would very much like to meet with some other ENT who can give me a reason for the pain (or at least act like he or she is vaguely interested in finding out what the cause is) so I can stop fighting back this anxiety that is now lurking always in the back of my mind.  I tried to be a Google sleuth and look up ear pain as a side effect of chemo, and I found a blog from a woman who was being treated for cancer and was suffering from some extreme ear pain...and then I read further in her blog and found that she died, so that didn't help my mental state.
     So I will continue to be proactive and take my own advice and keep seeing doctors until I find someone who can give me an answer that I'm satisfied with.  But I have to confess I'm just damn sick of seeing doctors.  I know, another Poor Pitiful Pearl moment.  I'll pull myself together.
     On a totally different note, I bleached out the top of my hair, just for kicks.  I figured that, if I hated how it turned out, I could just shave my head because I know what that's like and it's not a big deal to me anymore.  It looks a little odd, but I think I like it.  I initially tried to dye that white patch in the front blue, but I didn't realize the white hair would be so resistant to color.  It only turned a very sickly, pale blue that wasn't very satisfying.  I suppose I could add color now to the bleached parts and achieve something more vibrant.  We'll see.  It's kind of fun to know that there are such low stakes involved in doing things to my hair, because I can just start over at anytime.  Just bring on the clippers!  If I haul out some fun colors, I'll include a picture.

Regular Life Jams:  "Love Yourself" by Justin Bieber (okay, I know it's The Biebs, but seriously, I just love the line "my mama don't like you and she likes everyone"--it just tickles the heck out of me), "River" by Bishop Briggs, "Take Your Mama" by Scissor Sisters, "Ophelia" by The Lumineers, "Way Down We Go" by Kaleo, "Kiss This" by The Struts and, an oldie but a goodie, "Creep" by Radiohead.

Memorial Day

     I'm sitting here typing while listening to the sound of my backyard neighbors' many small dogs yapping incessantly, punctuated occasionally by an enraged outburst that halts the arf-arf-arfing momentarily, allowing me to hear more clearly the soon-to-be increasingly inebriated discussions between the two men of the house of all matters fit-to-be-pissed about that seemingly can only be fully expressed when voiced at full volume with a plethora of F-bombs.
     Happy Memorial Day holiday?
     Although I would like to say that having cancer has given me a near-total Zen-like acceptance of everything in the world around me, my peaceful interior space is still unable to block out the irritation that blooms when that canine-human show begins out back.
     The Zen thing.  It's a work in progress.
     My first-year-of-college roomie is coming to visit for a few days this week, so part of our socializing will include some jaunts to radiation (where she can enjoy non-People magazines and even a jigsaw puzzle, if she so desires).  Of course, there will have to be cannoli involved at some point in honor of the visit.  Nothing says fun like radiation and cannoli!  Whoop whoop!  And because I am not yet in the potential esophagus-burning stage, perhaps we will be observing wine o'clock?  Methinks we will!
     Although it is too early in the radiation game to be feeling any side effects, I am having an interesting (and by interesting I mean annoying and painful) chemo side effect that I didn't know existed.  About two weeks ago I woke up with aching finger joints.  I felt as if I had been sleeping with my fists clenched all night.  Anyway, I wasn't planning to dwell on it, but the aching became more pronounced and was lasting through the entire day.  Every day.  And my ring finger is not only aching but gets "locked" in a bent position that I have to sort of "click" out of to straighten. 
     So I was thinking arthritis--after all, I'm not a spring chicken.  But the sudden onset just seemed unusual.  Then I thought:  Maybe this is a cancer treatment side effect?  But it started after chemo and before radiation--so how can it be related?
     In doing some research, I read that a study of women receiving chemo for breast cancer found that a significant percentage of them experienced finger joint pain occurring 8-16 weeks after their chemotherapy treatments finished.  And that the pain can last anywhere from several weeks to several months, but that it is not permanent.
     Who knew?
     Ibuprofen doesn't seem to help, so if I feel motivated I may explore other methods of alleviating the pain...or not.  Now that I know what this is all about, the Suck It Up, Buttercup approach seems doable.
     I think it will be a difficult transition for me to experience my body in a way that is not always cancer-centric.  Will I feel various aches and pains, sore throat, muscle strains, and always think is this a cancer thing?  Or is this just a regular body thing?  A woman-of-my-age thing?  Or a relapse?
     I have heard from those who know that it takes a long time to move away from the worry/paranoia/hypochondriac way of being after cancer.  So I will be asking for patience from family and friends if I trend that way.  I don't aspire to be a hypochondriac.  But with this type of cancer, the majority of relapses are discovered by a patient noticing and reporting symptoms rather than through any schedule of scans or other tests.  That's a lot of pressure!  There is a certain peace of mind thinking that Science will be on guard, watching over you to stop cancer in its tracks.  But when you know that it is you who have to be the first line of defense, well...I can see how I might err toward the side of hypochondria.  Given that, among the symptoms of this type of lymphoma are mundane things like coughing, shortness of breath, and itching, all kinds of general cold and allergy-type symptoms could potentially raise the alarm in my head.
     So yes, patience and understanding will be necessary so that every winter cold doesn't translate into I'm dying!
     On a superficial note, my hair is growing again.  All over.  I have to say I really liked not having to shave my legs or under my arms during chemo; I considered it a nice bonus, all things considered.  And although my eyebrows are growing back, too many of those darn hairs are missing the mark of growing within the boundaries of where I would prefer my eyebrows to be. (Follicles, I appreciate the enthusiasm, but can we have some focus?!?)  No end in sight to drawing them in.  The hair on my head has grown enough that, just maybe, people are unsure if I am post-chemo or if I'm just a 50-year-old woman trying to rock a badass short haircut.  Although there is just as much silver and white as there was at first regrowth, the rest of the hair seems to be lightening up, and some friends have reported they can even see a wee hint of red in the sunlight.  Hmmm.  Looks promising?

Too bad the White Stripes broke up...remake of Bride of Frankenstein maybe?

     The orange-red stripes on my fingernails--one for each round of chemo where the nail cells were damaged--are slowly growing out along with the far less symmetrical black and white damage spots.  Same with my toes, but I'm a big fan of the camouflaging properties of a pedicure!
     All in all I think I am doing well.  Happy that I have an end-of-treatment date on the calendar and looking forward to summer activities and maybe some travel when it's all over. 
    

    

From Craptastic to Zaptastic

     As of right now I have completed my first two of 20 radiation treatments!  Whoo hoo!  My final treatment will be on June 27.  I know these next weeks are going to go by very quickly, and hopefully more painlessly than not.
     Two days in and I feel like an old pro.  After the 30-mile drive to the facility, I park in the special Radiation Oncology Patient parking, put my parking permit on the dashboard, walk through the back door and down two flights of carpeted stairs to the Radiation Oncology Check In.  I give my name to the receptionist, sit down to contemplate the woeful lack of trashy People magazines, and in a moment hear my name over a PA system calling me to report to the Patient Waiting Area.  I walk down a hall to a changing area where I grab a gown, go in a numbered dressing room, take off my clothes and shoes, put on a gown and paper booties, lock my stuff in the room, and slip the key with its coiled bracelet on my wrist.  I walk around the corner to another waiting area--this too lacking in People magazine but full of golf and home décor magazines, with some National Geographics thrown in for good measure. 
     I barely sit my gowned and bootied self down and am called down another hall by smiling radiation technicians.  I lay myself down on the metal tray in my head-and-arm mold that was made during the simulation, arms overhead and hands holding some plastic pegs.  Then the technicians Velcro a band around my feet, put a cushion under my knees, scoot me around, use a remote to scoot the tray around, call numbers and measurements back and forth, adjust my gown opening (after draping me with a small towel for modesty--how sweet--as if I have any left at this point), measure the distance from my chest to my chin, tape my chin in place, and leave the room. 
     Then it's all big spinny-rotating machine noises and green light beams lining up, a couple of regular x-rays to start things off, and then the machine rotates to its calibrated positions (when it's overhead you can see these things like teeth in two metal combs shifting to create various custom openings through which the radiation is delivered to match the size and shape of the tumor at different angles).  Other than that there is nothing to indicate when the radiation itself is actually happening.  They tell me the exposure is only 30 seconds. 



Big spinny IMRT radiation machine.

Metal comb thingies--I mean, the collimator--that make IMRT special.

     But all in all, from the time I am called back to the changing room to the time I'm walking out the door to my car, it's about 15 minutes.  The session yesterday took a little longer with the set up (first time and all, I guess), and also doing the needle-tattoo dots where they painted them on during the simulation.
     I think I will have to limit cannoli rewards to once a week, or I will be throwing the measurements off by the end of the month! 
     Anyway, so far so good.  The beginning is easy peasy mac 'n' cheesy.
     And yes, you may make glow-in-the-dark, Ironman arc reactor, etc. jokes.  Let's have some fun!

I No Longer Seek Approval

     The appeal and the special Dr. Ray Donc letter and the good juju did the trick.  The insurance has approved IMRT, and I will have my first radiation treatment on Wednesday afternoon.  I'll have a baseline pulmonary function test done tomorrow morning and an echocardiogram done Wednesday morning.  And I'm guessing that if I don't know my extended radiation schedule before Wednesday afternoon, I'll find out by the time I leave the facility, hot off the radiation machine and sporting my 3 new tattoos (okay, just 3 purple-blue dots, but I will be able to say honestly that I'm rocking some ink).  Sooooo edgy!
     I have to complete 20 sessions; ideally I would have treatment Monday through Friday for 4 weeks; however, because I do have a few days here and there on which I absolutely cannot make an appointment (my daughter's college orientation day being one), it won't do any harm to miss those few days and then tack them on at the end.  As long as I'm not skipping out on a whole week.  So I hope to be all finished well before the end of June.
     All in all this is a very short course of radiation--radiation for treatment for breast cancer would run 6 weeks or more.  My aunt had 44 radiation treatments--does she rock or what?!?
     To say I'm happy that the approval came through is an understatement.  I have to refer back to Redthreader's comment of a few posts ago about this phenomenon of insurance companies having the power to determine the course of a patient's medical treatment, overriding the expertise of the medical practitioner:  I agree with everything Redthreader said.  I can't imagine how maddening and frustrating it is to be a doctor, make recommendations for your patient's care and plan out the best course of treatment, and have your patient's access to tests or treatments denied. 
     It's surreal and bizarre and it sickens me that medical insurance companies can deny a patient coverage when that patient has been paying premiums to ensure that, when the time comes, their care can be paid for.  In 2015 the CEOs of the top 10 for-profit medical insurance companies each made anywhere from $10 million-$15 million dollars through a combination of base salary and bonuses.  I wonder how many denials it takes to make $10 million?
    

Playing Telephone

 I talked with Dr. Ray Donc last night.  Although he admitted surprise at the conclusion, he said that the plan for IMRT looks "pretty darn good" and asked if I were willing to move forward.  So after a lengthy conversation full of probabilities, research stats, percentages, comparisons of apples and oranges and what ifs and survival rates and recurrence and what would you do if you were me and the good, the bad, and the ugly, I gave my consent to move forward with the appeal for IMRT.
     They should know by Friday/Monday what the insurance company's decision is and will call me right away with the outcome.
     So the waiting in suspense should be over soon.

Will it ring faster if I stare at it?

***

     I did ask about my super mobile heart and why that doesn't jive with proton beam therapy.  Given that I am not a doctor (I just play one on this blog) and that Dr. Ray Donc was trying  to explain this to a layperson to the best of his ability, here is what I understand (any factual errors are certainly mine):
     The "allowance" for my heart movement for this therapy was 5 millimeters.  When I was in an agitated state, my heart moved 8 mm and moved a full centimeter when I was in a relaxed state.  Not some whopping amount of movement but enough to be too far out of the allowance.  Too unpredictable. 
     But why does this matter?
     The proton beam, while allowing the doctors to designate a specific depth to which it is delivered, also requires a calibration of tissue mass.  And in my tumor area they had to account for the mass of the heart, the tumor, the lungs, and the empty space as well.  From what I understand, the protons will be attracted to the area with most mass.   And with my heart mass moving that much, what can happen is the heart will "lead" the protons away from my tumor; in theory, I could go through a course of proton therapy and my tumor wouldn't actually receive a therapeutic dose while, at the same time, my heart would receive way too much.  I could go through the therapy and not only derive zero benefit, but I would put myself at a much higher risk for heart damage than I would have otherwise.  And there would be no way for them to know that.  So they deemed it too risky. 

***

     Got a call this morning from the precertification department at Dr. Ray Donc's facility.  Had a nice convo with a lovely Insurance Wrangler.  She told me that she had spoken with our insurance and, although verbally it sounded like they would give authorization, the particular type of authorization is one that she, from experience, knows is a kind of shady authorization that allows the insurance company to deny you at the end of treatment and stick you--surprise--with the bill.  So with a special letter from Dr. Ray Donc, she is putting through the full appeal plan to obtain an actual no-kidding authorization. Who knew there were such sketchy goings on?  I mean, I'm not surprised, but still. 
    
    
  
    

    

Heart Failure

     It is a heady experience being told you are ideal and perfect.  As a candidate for proton beam therapy, that is.  I have to admit, it felt good to hear it.  There really isn't any other area of my life in which I ever feel ideal or perfect, so to have a medical professional tell me that in this one narrow area those adjectives applied to me was, well, some pretty strong stuff.  Got me all jazzed! Psyched!  Gung ho!  Whoo hoo!
     Until I was told Monday that I'm not ideal. 
     Well damn.  That's a reality check I wasn't expecting.
     During my CT and radiation simulation workup Monday (which, I'm just going to say, was difficult, to say the least), Dr. Ray Donc told me that the proton beam docs had determined that my "heart moves around too much" for them to deliver proton beam therapy safely.
     Say what?!?
     Doesn't everyone's heart move?  At least, those of us among the living?  It beats, it moves, right?  What's too much?  What does that even mean?
     Suffice to say I was not in a physical or emotional state of mind at that point (whilst attached to a metal tray by rigid form fitting mesh) to even frame those questions.  I was asked whether I wanted to then proceed with the simulation for IMRT.  I asked Dr. Ray Donc if he thought he could deliver that form of radiation safely.  Well, the simulation test info would provide him the information he needs to evaluate that.  So I agreed to finish the simulation, and I had hoped to hear from him by Friday. 
     I'll call Monday to see if there is any news. 
     If Dr. Ray Donc and his team don't think I am even a candidate for safe IMRT, then they will not proceed with an insurance appeal.  And if this whole panel of radiation doctors doesn't think they can do this without too high a risk of heart damage, well, I suppose I will not be going forward with radiation therapy in any form.
     Believe me, I think I have all the same questions that you might have at this point.  I just feel as if I failed a test that I didn't know I was going to have to take.  I thought the insurance was the only obstacle to the proton beam therapy--I didn't think my own heart would somehow be marching so much to the beat of it's own drummer (puntastic!) that I wouldn't make the cut.  No one prepared me for that possibility.  Did they even know it was a possibility?  I mean, just how much out of the norm can I be?  (HEY, don't answer that!)
     So it was a tough day for me emotionally.  By the time I had spent four hours there, much of it in a painful position, with disappointing news and a cherry-on-top surprise dropping of my drawers in front of an observation room full of doctors and technicians (a story for another time but at least I wasn't wearing my granny panties that day), I only wanted to get home and it was going to take me an hour to do it.  So no cannoli for me.  Had a pity party of one, went to bed early, and woke up trying to shake off the disappointment and just keep moving forward.  It was a hurdle.  And I tripped over it.  But I'm still running (okay, jogging...all right, walking at a brisk pace) down the track. 
    

Denied

   

     
     I just returned from four days in the Bluegrass State with my daughter.  It was lovely, she did amazingly well at her tournament, and I was so busy and involved that I spent no time whatsoever thinking about having cancer, not having cancer, radiation, or insurance.  I was just me, doing my thing, and it was wonderful!  
     That is, I was in the Cancer Free Zone until I received a call from Dr. Ray Donc at the hotel the night before we flew back home.  In a nutshell:  The insurance denied the use of proton beam therapy, aaaaaannnnnnnd...also denied IMRT radiation!  A double denial!
     THAT was a surprise, to say the least.  I had expected a first round denial for the proton beam, but to deny regular radiation, too?  Way to keep things interesting, insurance!  Thanks for that!
     Anywho, Dr. Ray Donc and his peeps are ready to fire back at the insurance company.  They need to put together all kinds of documentation and present their plans--basically how they would do the proton beam and how they would do IMRT as safely as possible.  Dr. Ray Donc said that if this tumor were in my armpit, there wouldn't be a denial for IMRT--it's that inappropriately (and inconveniently) cozy relationship of the leftover tumor with my heart that is the wrench in the works.
     Part of presenting the plan involves providing simulation data. To that end I will go on Monday for a CT scan with contrast to map out my blood vessels.  (Reward:  There is an outrageously delicious Italian deli that is located along the far trek to this cancer center, so after my fasting and visit to the Tube O' Zap, I can stop and get a cannoli on the way home!  Yesssss!)
     And Tuesday I see my cardio-thoracic surgeon buddy to let him look at the latest PET. And we can have a fun conversation about arteriosclerosis and I can get his take on this particular gamble.
     I am not a person who has ever enjoyed gambling. I am a low-risk kinda gal.  So all these percentages and probabilities and likelihoods and maybes are driving me crazy.  I want a 100% clear path, one-choice only scenario, and no one is going to give it to me, and I'm not going to find it anywhere.  Which makes sense:  No one really gets that in life, right? So I will just have to take a deep breath, get my mind right, and keep moving forward.  
     The insurance appeal is in good hands, of that I am confident.  I don't think Dr. Ray Donc and his team would commit to investing all the time and the immense resources they have to do this if they (a) didn't think they had a good shot and (b) weren't invested in a positive outcome.  Yes, I'm sure they do care about me as a person.  But perhaps slightly more importantly for them:  They want the data that my proton beam treatment and lifetime followup can provide.
     So I'll keep you posted.  In the meantime, we'll all just enjoy...everything we can.  That's really all anyone can do at any given time, right?  Enjoy!  (And maybe have a cannoli!)

Ants In My Pants

     I have so much enjoyed all the tumor-fruit-comparison suggestions from near and far (finger limes, okra, even 3 olives on a swizzle stick--so sophisticated and celebratory) and, of course, I am so appreciative of all the happy and supportive messages from so many!  It has been keeping the smile stuck on my face!  Don't you feel like we did this together?  I do!
     We are still waiting it out as far as insurance approval for the proton beam, with no indication of how long this wait could go on.  There was a little bit of a hitch in my giddyup this past week when, instead of high-fiving me and slapping the Seal of Remission on my chest, the second hematology oncologist said yeah, well, hmm, I'd like my peeps to take a look at this PET because I think the summary is a little ambiguous and I just want to make sure and if they don't think the tumor is fully negative I'd like you to have another biopsy and...basically  it was needle-scratch-stop-that-happy-dance-music.
     Talk about being a killjoy.  A wet blanket.  A party pooper.  Raining on someone's parade.  Bursting someone's bubble.  Putting a damper on things.  Pissing in someone's cornflakes, to put it indelicately.
     It was a true test of my ability to stay positive, to resist the urge to catastrophize, to stay in the moment, and to avoid stressing out about things that are beyond my control.
    Sadly, I was nowhere near as successful in that endeavor as I'd eventually like to be--I had nightmares about bronchoscopies and was turning into a little bit of a "what if" basket case.
     But the oncologist called me on Friday and said her peeps concurred with the previous findings regarding the tumor.  Whew!
     However, she did leave me with this little nugget:  If I can get the proton beam, she definitely recommends it.  But if I can't, after consulting with various colleagues, she would have "reservations" about doing the regular IMRT radiation because the area to be radiated is right next to my heart.
     I asked her what she would do if she were me.  That was silly of me--I'm sure the litigious society we live in dictates I wouldn't get a straight response to that question.  The most I could get was "it would give me pause."
     Hmph.  THAT wasn't a very satisfactory answer.
     So I'm curious if, once seeing the current PET and having read the summary (and the "new" summary), Dr. Ray Donc would feel the same way.  Questions, questions.
     All that being said, until we get the word one way or the other on the proton beam, all of this is just an academic discussion.  And I'm not going to chew on this too much until I have to.  I'm not trying to be Queen of Denial...just trying to avoid the catastrophizing, etcetera, that I mentioned previously.
     But I am more than eager to get a date on the calendar; the sooner the treatment starts, the sooner it will end, and I would honestly like to wrap this all up in a nice bow and be done with it.
     Last but not least, for anyone who is participating in a hair pool, here's the skinny on what's going on up top:  After buzzing the fuzz down quite a few times, it looks like my hair is coming in all the way around, certainly thicker each time it has started growing back.  So I'm going to leave it alone for now and just let it keep growing.  As for color, well, it looks like Raiders Nation here:  Black and silver, baby.  Yep,  I kid you not.  Silver, not so much a surprise.  But black?  I wouldn't have guessed that in a million years.