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!)