It Takes a Village

 Updates since I blew a gasket.... I emailed my medical oncologist my LONG list of questions.  To which he responded: I am out today.  Let me review your questions and let’s find a time to discuss.   I am glad we tested you but as you have gathered it comes with more questions and implications. CS This dude and his correspondence are NOT impressive.  I've shared his emails and my frustrations with my nurse navigator at Katzmann and my primary care physician.  They acknowledged that it wasn't handled properly, but stressed that I needed to set up a face to face appointment with him to hear all of the options, and ask all of my questions.  If I'm still unhappy with his care they will work to have me consult with another medical oncologist.  I also filled out some survey they sent me right after the appointment. So, Monday I called to make the appointment, but they had to talk to his nurse so said they'd call back.  When they called back they suggested we meet after radiat

I hate it when my students say, "what the..." my response to them is always, "find another phrase, nothing good ever comes after the...."   I've acknowledged my "good fortune" throughout this process, but it feels like that has come to a screeching halt in the last hour.  Dramatic?  Yes.  Pissed off?  Yes.     Last Monday, 6/10, I met with my Medical Oncologist.  Dr. Caribbean.  He told me no chemo (hooray!) and probably Tamoxifen for 10 years, BUT he also wanted to do a genetic blood clot test since my dad had a pulmonary embolism.  He told me he'd call me by Thursday 6/13.  I'd thought about the call at random times, but also decided that surely no news was good news!   I went to a 2 day class in Cedar Rapids this week that wasn't at all what I was expecting, recovered yesterday and today sent an email inquiring about the results.  To which he responded very quickly:      Oh geez.  Sorry. I totally meant to call. Sorry. You do have 1 copy

Nolan got home from Washington, D.C. this morning at 1:45.  He did NOT want to answer all of our questions then.  Weird.  He also slept until noon!  It sounds like he had a blast!  His daily highlights were the Air and Space museum (out of the city), Orioles game and the US Capitol.  He said he preferred traveling with us to 75 7th graders!  I'm shocked.  He shared his pictures and souvenirs, answered our questions and is now enjoying the technology we made him leave home and the solitude of "normal."   Absence makes the heart grow fonder, but Jason and I enjoyed ourselves, too.  Anniversary dinner, happy hour, Ted Lasso, supper with our parents, time with friends-pool, coffee, Magic of the Night, Bridgerton binging.  All good.  We are enjoying Nolan's independence! No medical reports until I start radiation so the blog will be more like a summer journal.  Follow along, or not. :-)  

 Today Jason and I celebrate our 19th Anniversary! We started the "celebration" with a 1:55AM wake up call to take Nolan to school for his trip to Washington, D.C.!  An update on his day: first flight out of Des Moines was delayed 2 hours so they missed their Dallas connection.  After eating lunch they were bused to a different Dallas airport, where he will fly to St. Louis and arrive in DC 12 hours late, at about 9PM.  Hopefully.  He did have to check his carry-on luggage, so it will be interesting to see where that ends up.  I think he's having fun with friends!  I am proud of my "it's out of my circle of control" attitude. Jason and I fell back asleep between 4-5, the birds and sun wake up early in the summer.  Then Jason worked for a bit and we went to my Radiation Oncology appointment with Dr. Bodine.  We found out that he also has a 7th grade boy who goes to Nolan's school.  They were in choir and show choir together- he thought we looked familiar.

I'm grumpy and anxious and I've definitely already started taking those feelings out on Jason.  Tomorrow we meet with the Medical Oncologist who will have the results of the Oncotype test and who holds the fate of my "next steps" in his hands.  Chemo?  Medication?  Both of which I've Googled and read too much, yet only scraped the surface of, "super fun" side effects.  I've been expecting medication and radiation from the beginning.  The possibility of chemo just entered the conversation (surprising me) on 5/28. Here's hoping tomorrow is more about packing Nolan for DC and the doctor appointment is calm, cool and uneventful.  I appreciate the good vibes.   Grunt.

Up until this point in my life I had only experienced physical therapists.  They were always gentle and kind.  Today I had my first occupational therapy appointment.  Kendyl was also so gentle and kind!  If the word therapy is in your title you must be a good human!  She's also the friend of one of my Brookview buddies, which was a fun small world connection!  (One everyone wants as they whip out their giant 41 year old not-quite-Franken-boob....I digress.) My range of motion is really good, I feel really good, I haven't noticed swelling that I'm aware of, so I wasn't really sure what OT would mean for me.  Katzmann schedules everyone who has breast surgery an OT appointment for after.  I'm told not everywhere does that, and instead of being proactive, many people are sent for OT in a reactive manner.  I will also see Kendyl a few weeks after I finish radiation. Today I learned a lot about my lymphatic system and Lymphedema, and I have more to learn and read.  Lymph

This wait is getting to me.  The Radiation Oncologist that I was supposed to see Monday that rescheduled for Friday rescheduled AGAIN for Tuesday!  All because we're waiting for the Oncotype test results in which the sample didn't arrive or get sent to whatever lab until 5/24, and it takes 2 weeks.  Where was it between 5/15 and 5/24?!?  UGH!  And the people who call to reschedule keep saying "if you need chemo...." which makes me super whiney because Dr. Torstenson probably should NOT have told me I WOULDN'T from our very first meeting on 4/12! So a re-cap of the current schedule: Friday, 6/7- Occupational Therapy-it sounds like they have everyone do this, I'm not having any noticeable issues.  She may poke at me and discover some. Monday, 6/10- Medical Oncologist. (This doctor is also going to need the Oncotype test...so I am just waiting for that phone call.) Tuesday, 6/11- Radiation Oncologist and Therapy Consult. 6/11 is also our 19th anniversary and we d

I hesitate to share this much info, but I am a teacher to my core and if even one person is curious, would benefit from this information or has to travel this shitty path and this helps them, so be it.  With the caveat repeated to me over and over again, everyone's diagnosis and plan is different. Healing.  Wednesday will be 3 weeks since surgery. I am feeling so good.  My armpit pain is less, I notice it the most when applying deodorant...and thought yesterday that perhaps aerosol deodorant is what I should have purchased.  Then I remembered my dad's demonstration of aerosol and fire when I brought home a can of hair spray in high school, and decided I'd suffer through the discomfort- lest he think I didn't listen.  (Why would fire and aerosol hair spray be next to each other?!🙄) The armpit scar feels hard.  It doesn't hurt, but it feels hard.  I'll inquire about that on Friday, but am told (by non-medical people) that that's normal.  I've never had su

 I hate making phone calls.  Hate.  Summer is doctor appointment season for Nolan and me...and I realize I've been off for over 2 weeks.  But today, before 10:30AM on the first official day of summer, I made ALL of our summer doctor appointments!  ✔✔✔✔✔ I'm so proud!  I was even brave enough to switch eye doctors and set up a consult with a therapist!✔✔  So proud! It started with rescheduling the Radiation Oncologist which will now be at 11AM on Friday.✔ Nap time?

I'm using the term shenanigans loosely, as my weekend was incredibly chill, quiet and wonderful.  I love my family so so so much, but these Boy Scout camping weekends sure do go fast. This weekend I.... Re-Watched Queen Charlotte...I'd definitely seen it, but I'd forgotten so much. Went to Jason's cousin's son's graduation party. Readied my classroom for summer...thankfully I'd started to "put my room away" in anticipation of surgery at the beginning of May, so there wasn't much to do.  I assume there will be things I scratch my head about in August, but I think there always are. Ate Mexican in the middle of the afternoon...if I lived alone (and didn't have a job) my sleeping schedule would be midnight-9AM and meals at 11 and 4.   Napped...probably doesn't help my sleep schedule. Took a flight of ice cream to my parent's house....my favorite was the black raspberry oreo. Grocery shopped...HyVee on a Saturday night at 8PM is one of m