Saturday, November 23, 2019

It has been a long day.....

For weeks, I have been waiting for results.  For weeks they have not come, so I scheduled an appointment far enough away to get results, but not far enough to get treatment before we leave.  The last week has been riddled with shortness of breath, what I believed to be heart palpitations, lots and lots of anti anxiety pill (natural and otherwise).  Yes, alcohol is included.  Amazing how a stiff drink will ease pretty much any woe.

Oddly, Friday morning, my left knee was a mess.  It is the injured one.  The arthritic one.  The one that will have to be replaced.  But, I have not had problems with it for years.  Did I sleep wrong?  How do you do that with a knee?!?!?!?!  But just with the focus on another thing, all my shortness of breath, anxiety, etc. vanished.  Silver Lining?  We will see.

11:30  - Blood.
12:00 - Hank.

At Blood, Jackie (nurse, cancer survivor, parent that taught me about playmobile when the boys were young) was like, "What happened?  Show me everything!  Show that to Hank!"  We did have a great conversation and she gave me great advice on SE Asia.  I love her to death, well not really death, but you know what I mean.

Waiting for Hank I had all my vitals taken.  New nurse.  Gave her advice on adopting a rescue, purchasing a bernadoodle, and having long car ride with boys when then are teenagers so that they will talk to you.  She has a 22 month old boy.

Here are the results.......genotheraphy is a bust.  For the items that I scored on, it is inconclusive.  Not to say it would be 10 years from now, but for now it is.  So, if we pushed forward, the likelihood of getting the drugs to do the trick are almost impossible because there is not evidence they will work.  I get that.

So, now what will be.....I am not back full blown chemo, but I am close.  It is called CPT 11.   After discussing SEVERAL options and what seemed best and the most appropriate for my cancer and believe me Hank went down every rabbit hole there was, explained it to me, and was clear on what would work.  I am also a patient that will pretty much to anything on any schedule.  It works to my advantage and THANK GOD I have a community to support it.

Because of our schedule we can get in a round before I leave.  It is once a week for two weeks, and then one week off.  I start Tuesday.  First round requires a driver, I have one.  I will be in infusion for what they say is 3.5 hours, which could EASILY turn to six.  Biggest side effect....diarrhea (what is new), destroys my blood counts which oddly have been continuing to get better and are almost normal, and loss of hair.

Me anxiety, knee still kinda hurts, disappointed, but I have a plan, not dying tomorrow or next week, will see India, but I can't say I am dancing around.  I am a little flat.  My mom is thrilled and happy that there is more - and I'll I could say is, "I am happy, you are happy."  My mom replies with, "But the alternative?!?!"  I reply with, "Of course, but at what cost?"  This had been a horrible year.  I was just suppose to meet and touch base with my new docs and I have not only done that, but now have more new docs and two new protocals, cyberknife, and now chemo lite.  It is a tough way to live.

MealTrain is open again.  And I could use some help with walking Howie later on as it is cumulative.  House cleaning can be done by the boys and I.  A spring yard party might be in order as we really didn't get to much this year.  I will let you know.

Please enjoy your weekend.  I am sorry that I am not more happy, happy, joy, joy, but sometimes you have to be sad, sad, gloom. gloom to get there.  I will...give me the weekend.



Thursday, October 24, 2019

So, everyone is asking....

about my Mom.  She is doing great.  She had her left hip replaced and when just a few days ago I used to call her Gimpy, I now call her Speedy.  Long way to recovery, but Donna has been there since surgery and helping out a lot.  YAY!  She leaves this Saturday.....yikes!  Five weeks to go!

I am fine.  On vacation with the test results out, but it doesn’t mean I don’t worry, or cry,  or have anxiety, migraines, etc., but that is part of the game, right?!?!?

We are fine and moving right along with life as we should.

Happy Thursday, Ang

Wednesday, October 16, 2019

My cup runneth over.....

First, I do apologize.  I did leave a lot of people hanging, but I had a lot of my life to live and I did that......

I met with Hank on Thursday of last week.  We did not look at scans, I downloaded what I gathered happened which was confirmed (sad that I understand it now), and we talked about what we can do now.  There are two traditional chemo therapies - one I was on 11 years ago during general radiation to my pelvis.  The other I do not know.  Both are toxic to the system, both have unflattering side effects, both hurt your blood counts.  Now, my blood counts are good, but not normal.  After 99 hits of traditional chemo, that cannot be expected.  But, there is a "new" thing.  Keytruda was an immunotherapy and this is a genotherapy.  The first works with your immune system.  The second with your DNA - I think....  Upside, not toxic.  Downside, sometimes not effective and you pay for the test $4700.  One blood test - $4700, unless insurance decides to pay.  Now, let's be realistic.  I am not a good bet - they have rejected other things - treatment things, but in the end, I got them or a version of them.  I have never gone without care.  SOOOOOOOOOOOOOOOOOO, I do the blood test and the result come in in three weeks.  There are up to six genotherapies with a vast variance in success rates.  I don't know what it looks like, I don't know how or if it will be, but I can tell you, if I qualify, I will do it.  Blessing one.

Blessing two - Canadian Thanksgiving.  A family that we LOVE from the great white north came for Canadian Thanksgiving.  Rob, Jen and the GIRLS - both - visited and we did the pumpkin patch, big amazing Turkey dinner - butter under skin forever, Hong Kong Market (inside joke), the last stay at the Hawthorne Suites (inside joke), etc.  Now, remember Robin has the same cancer I do, so when it is just our families, things are a bit easy.  No questions.....half sentences....because we get it.  It is like a vacation from the the normal to our normal. I like it.  Robin probably hates it, but I have never put too much into his feelings, so we are good.  LOVE YOU ROBIN!

Blessing three - Monday, I was at acupuncture.  I love Jessica and she is amazing.  We do acupuncture and then she wanted to really get me in a good space, but I started talking politics.  She is so awesome.....she was like, "Okay, so we talking about that, but now we need to put that away.  Gather it up and set it against the wall and work on our focus and your healing." Okay, not exact quotes, but close.  So, I do.  Up against the wall, pixsy dust and stars, everything positive...  "Okay, now we are going to move the negative out of the we do and she and I both feel another "being".  NOTE:  Usually, when you do this it is self motivated.  You are moving the energy.  You are moving the light.  Jessica pauses and says, "I think that was God.  He was like first in line saying, 'Yeah, I will just take that from you.'  You told me you had a relationship with him but, HOLY COW."  I felt it too, never quite that strong other than the time, I wanted to die and he wouldn't let me.  It felt good and I was calm.  All I could remember..."Be not afraid."

Blessing four - My Mom's hip surgery went swimmingly.  Text book.  She was great.  Let the healing begin!

Blessing five - On my way back from the hospital to pick up the kids, I got a call from the blood test people.  CRAP.  I called back.  My test will be paid in full, I just need to fill out one more form.  "Yes, I can scan and it to me....."

Tomorrow, I am going to Bible Study to celebrate with them (no I didn't finish the study, but Day 3), the hospital to tell my mom that the hip fell out during surgery, they had to refit it, it was touch and go but we thought we got all the gangrene but only time will tell. lol. I am really there to get her out of bed and love her, and to love and curse the rain, have my kids forget stuff for school, cook an amazing recipe from a box that keeps coming every week that I don't know is sending, and just fricking keep swimming.

My cup runneth over......

Happy Wednesday,


Sunday, October 6, 2019

Feeling normal again.....

Okay, so........LOTS has happened since my breathing blissfully post.  All was going well, I was happy and comfortable and then on Friday morning, 9/27, I shockley (sp) woke up at 2:00am with tremendous pain in my sternum.  I tried breathing, I tried different positions, I tried all my natural ways of diverting or changing the pain.  Jessica, my acupuncturist, helps a lot in this, but I could not get the pain down to a 6 in a scale of one to 10.  I woke Grant and told him we have to call Hank.  Called Hank.  Hank said, "What do you have at home?"  We went over my left over meds.  Made a plan, but he said, "You know you can always come to the ER."  I took a pill and gave it 30 minutes - nothing.  Call Hank.  Pain is at a 9.  "Ang, you have never been at a 9.  Let me talk to Grant."  And off I go to the ER.  I arrive.  I am escorted in.  Doctors already prepped for me.  Ready to give pain meds.  Hank is on the way.  It is 5:00am.  Left texts for the boys - didn't want to wake them.  Neighbors are taking them to school for us.  I am so bless for my neighborhood and my community.  CT scan and chest ray done by 8:00.  Start the pain meds.  My plumber doc is notified.  Everyone is on the case.  I am so blessed, but still can lay back without pain.  Cannot sleep.  Have to get in front of the pain with them meds.  I know how to do it, but I am so confused.  Hank admits me to the hospital I need an echocardiogram, but they want to do it in the room, not the ER.  So, that doesn't happen until 4:30 so I am there for the weekend.  Plumber doc looks at everything and says, "Did my procedure help?"  I was like, "Dude, you were my favorite person until the narcotics nurse for this crap!"  "Well, great, we can do that again as much as you want.  (Eye roll by me)  But I don't think anything I did started this.  I think it uncovered something else or you have inflammation from the procedure.  We will find out and will take note for next time."  I like the dude - no sugar coating. Hank is not in over the weekend - good for him!  And I have a partner of his who he say was much more polite and professional.  He was, but not more, just different.  Monday, every doc I have ever had reads the scan.  New plan.  There is a tumor on my heart.  Now, it can be seen because of the plumber doc.  The pain is probably from inflammation around my heart (kinda like pleurisy of the lung, but the heart).    So, I go home Tuesday morning, manage pain until the inflammation goes down, meet with Hank the week of the 7th.  He starts me on steroids for my tumor on the heart.  Keytruda is done (because it can also help things grow), can't radiate, no surgery.  I am taking the blood test this week also to see about other things, but it looks dim right now.

Part of the reason I could blog was because the narcotics were strong and I was loopy as heck.  The other part is that I did not want to say it out loud.  My miracle drug is off the table, surgery off the table, radiation off the table and it is my frickin heart.  My heart....

I am off the narcotics and just back to Tylenol when I need it.  I actually had to buy are opiate inhaler in case I accidentally overdosed.  All of those are tucked away for another time.  My family survived well.  The boys got to school, and home.  Everyone pitched in so I am grateful.  I will be ready for tomorrow.  Meals start up again tomorrow.  We tried to survive this week solely on home delivered stuff - what a industry that is.  Grateful for it, but WOW.  To better weeks......

Happy Sunday,


Monday, September 23, 2019

Breathing blissfully.......

The procedure was a success!  From what I can gather, I had quite a bunch of crap in my right lung.  Like surgeon looking at Grant and saying something like, "Yeah man, she had A LOT of crap in her lungs.  I am not sure I even got it all, but we can do it again if need be.  Wow."  My bronchial tube was not completely blocked but it was like a corn maze to get into and out of my lung.  I have found that I like breathing.  I was so thrilled with myself (it should be the surgeon, but I am taking credit) that I think I spoke too much and did too much (which was not a lot) on Saturday.  So, on Sunday, I laid even lower, which is a feat.  I really pretty good today and will just hang out, rests, pay bills, and enjoy breathing.

Hank, of course being Hank, is on the research path again, and what to run another test that, again insurance may or may not pay for, but it is for yet another form of treatment while still keeping cyber and plumber surgeon guy on the payroll.  I have to coordinate for another blood test and see about insurance. I have Keytruda on Friday, so hopefully this all gets sorted by then.  The blood test take two to three weeks to complete.

Small and great victories......looks like I will still be around for awhile.  Something that has been easy peasy is the fact that I have many meals covered.  THANK YOU.  And for those not on the calendar, thank you for the gift certificates to fill in the gaps.  My boys have been well feed and are enjoying the food.  Funny, we get the meals delivered etc and the boys are grateful, thankful and helpful, but when Nolan's forth grade teacher came, Mason cleaned up the kitchen, put the dishes away and Nolan vacuumed.  WHA?  Teachers - we all know the impact they have....what would we do without them?!?!?!?!  (Of course, Nolan was in his robe the ENTIRE time, but I was in my pjs, so he comes by it naturally.)

Happy Monday,


Thursday, September 19, 2019

Well, I thought I had a plan...

So, the plan was Cyber all week and Keytruda on Friday.  Well, on Tuesday I got a call that said, "Hi!  I am confirming your procedure tomorrow."  I was like, "I have a procedure tomorrow?"  "Yes, it was moved up from Friday."  I replied with, "I have a procedure on Friday?"

Here is the gist....Keytruda postponed until next week, but a rigid broncoscopy is on like Donkey Kong.  It is surgery under general, but it will clear out my lungs of all this "crap" I am coughing up.  The last one I coughed up was right after bible study.  Like, I went to my car and cough cough - 1 inch my 1.5 inch tumor/crap/junk comes flying out.  Thank you God for waiting till I got out of your house!  I reported it to Hank and he was done.  Hence the speed in which this was done even without the patients knowledge.  I met the Doc after I signed all the consents which is a little backwards.  He has wild hair and called himself a plumber.  He is super confident in what he does and I had to slow him down a couple times - which he did quite nicely.  I think he may be asked to do that A LOT.  He seems to think he can stop my coughing and for that I am grateful.  All the docs working on me now are discussing what would help them and if he can do this for that, etc., for which again, I am grateful.  Today,  I am sore - between all the coughing and Cyber, my chest hurts, but that may be cleaned up tomorrow.  So, last Cyber today.  Surgery tomorrow.

Note:   I found out yesterday his nickname is "Flash" for Flash Gordon (Gorden being his last name).  SMILE - "Flashy, yes Flashy will do JUST fine."

Happy Thursday,


Saturday, September 14, 2019

Hi....I am tired....

My last post was that I was to start Cyber knife which I have, but I wanted to start after the kids started school.  The interesting part is that I am coughing up "tumor like" objects more than twice a week now.  So, lets review.....

Since December of last year, I have had pelvic PT, an Epi and Colonoscopy, started on Keytruda, had trans anal "mini" tumor clean up, started on cyber knife at the same time, and am coughing up "tumor like" objects from my lungs which messes with my breathing, pulse, and oxygen which is now led to a pulmonary doctor that wants to laser out my stuff in my lungs.  NOTE:  I have also gone to SE Asia, The Kentucky Derby, and Africa on Safari.  So, take all of my whining with a grain of salt.

My boys are at two new school.  Most of you know Mason got into Aviation, and my fight with Kent was futile.  They stonewalled the information I needed from public records for over three weeks and just before school started.  They did not want my son, but they wanted him at the school that they would benefit best.  They with my guidance and literal wiliness to drive 3 hours a day created an amazing student that they wanted to exploit.  But I digress.

I do believe sometimes things work out for the best and this may have been an intervention from our Lord that I, of course, was so focused on the fight with Kent I missed.  Seattle Christian had and opening in 7th Grade - miracle because lots in my neighborhood are on the wait list.  There was a voucher for 50% off tuition for a new student to middle school.  He sailed through the enrollment process and because of his involvement in church with his best friend he knew people, he knew the camp for orientation that was his summer camp for years, and he knew enough that he could answer Christian based questions with authority.  AND, since we started with, "No, Jesus is not from Bellingham.  It is Bethlehem." There are not many more signs than that.  I felt good about this.  My life is also a lot better - I have carpool options.  My drop off with the kids is no more that 45 mins if Mason's friend is at the bus stop to one hour if he is not and, actually, wants to talk to me or stay dry.  Jury is still out.

But, I am tired.  I am tired of insurance companies, I am tired of which doc the new doc has to have a referral from, I am tired of the bills, the changes both internal with procedure and billing, I am tired of being tired.  I am also SUPER tired of older people yelling at staff at the cancer center because there appointment is late or they are tired.  I am like, "You ever been sick?  No?  Well, this is how it is.  Cut them a break.  It has worked for me - I am a princess!"

Thursday and Friday of last week, Hank was concerned and so I was sending him my vitals every couple hours.  I cough up another tumor right as I left Bible Study.  Seriously God?????  Can you spare them that.  I will cough for three days and then cough cough and this 1 inch by 1/2 inch thing shoots from my mouth.  I just does get sexier for me.  I shoot or don't shoot crap out of my butt, my stomach is bruised from all the shots I have to take, and now I have tumors flying (which I catch) out of my mouth.  So, Hank is talking to the Pulmonary guy, they are reviewing my scans, no one has done this before other than one guy with one guy one time with a skinny 2 inch.  I am at seven.  He has nothing on me.  What is it?  Junk with tumor cells or Tumor with Junk?  That is the big questions.  They biopsied one, and it was mostly tumor, but others are white and different sizes.  My ribs hurt all the time.  And I challenge anyone to my core strength.  I can cough for 4 hours straight.  The referral was rejected because it had to come from my PCP, so they requested it and told me it would take 24 to 48 hours.  I responded with, "I am going to email them.  You will have it today.  I need the Tuesday appointment."  Their response, "That is highly unusual."  I was thinking, "You haven't met me have you......"  Within 90 mins the referral was done, appointment made.  Off to Cyber Knife. "How are you Angie?" they say.  "Good." I reply.  My kids all the time ask me if I am okay.  I didn't know how to say this for a long time, but now I simply say, "Not great, but I will be."  So, next week is all Cyberknife and then Keytruda on Friday.  I will be wasted on Friday, so if there is a driver out there that can be at my house at 9:30am and drop me back at my house at 1:30pm that would be great.  Otherwise, I will be fine.

I also posted about dinner delivery.  You know those companies that deliver dinners to your house?  I haven't done this in years and before y'all brought it OR I got money and bought dinners I could put in the freezer.  I have been experimenting FAILED miserably at it.  Every Plate I think is about the joy of preparation and cooking.  I really just need a dinner that I or my family can put together easily and bake.  I figured we could do that.  FAIL.  This lead to recommendations, which I appreciate and have started to use but also two of my most fierce friends recommended Meal Train.  I did not even fight it - they are worse than the Kent School District.  I mean that with love!  I am honored and humbled by people wanting to help.  I also got my instapot out.  I had done some prep before, but now my boys eat SO MUCH.  It does not last long.  If you are interested in Meal Train, here is the link.  I think i just need it until November 15th or so.  Cyber will be done, Laser with be done and Keytruda I have no idea, but lets hope.  For those of you that have already signed up or send me a gift card, I am thankful and humbled.

Okay, enough of that are a couple great stories of why I fight so hard to be here......

Mason - He is my mechanical child.  I love that.  We have more bikes that three times our family.  The work he is doing is amazing.  He fixes bikes in the neighborhood, builds bikes at the local store bike shop for parts, he is amazing.  Every once and a while he says to me, "Can I wash this in the sink?"  I am like, "No, get your bowl you stole from me, pour gasoline on it, and it will clean up in a jiffy."  He is like, "Really?"  I am like, "How do you not know that?!?!"  The difference is in my family we have to dispose of the used gas "responsibly".  ;)  So, here is that rub.  He comes to me last week and says, "I got a recipe for a Banana Milkshake.  Can I make it?"  (He also took cooking last year - there were a lot of girls in the class....)  "Sure.  Do you know how to use a blender?"  "Yes."  So, we have a magic bullet.  Not because I wanted one, but because it was free from my Mom.  Mason puts the Banana in the mug you invert to blend, but then pours the milk over the motor of the with no container.  Like blender with no blender container on the motor.  Just on the motor.  I hear this, "Help."   Milk is going all over the counter. "WTH???"  He explains.  Okay.....pause......not best parenting moment......I reply with, "Are you not the sharpest tool in the shed?  This is the MOTOR?!?!?!?!?!  What makes you think you pour a liquid on a MOTOR?"  "I don't know!"  We go over it, but obviously, motor is not working.  We switch to a smoothie maker Nolan bought at a garage sale.  DAY 2  Mason is going to make a Banana Milkshake.  REALLY?  Donna and I have been canning pears.  I already told Donna about the previous day milkshake.  Miraculously, the Magic Bullet motor works after drying out.  I show Mason all the options.....cup, blender container, and the blades that screw into either to blend it.  I leave.  Mason then puts the banana in the cup and immediately pours the milk in the blender container with no bottom.  Remember the blades were in the middle depending on how we wanted to use it.  "Help."  SERIOUSLY?!?!?!?!?!?!??!?!?!?  This is the mechanical one!  WHF!!!!!!!  I am like, "Mason?!?!?!  WTH?!?!?!"  He was like, "Maybe blending is not my thing!"  I quickly respond to, "THIS HAS NOTHING TO DO WITH THE BLENDER!!!!!!!!!!!"  I then say, in a not very nice voice, "PUT EVERYTHING IN THE CUP."  He did.  "SCREW THE BLADES ON AND STICK IT ON THE BASE.  BLEND."  My Aunt was speechless.  He blended it for like 5 mins, but at least it was contained and when he took it off and tried it he was like, "This is delicious!"  Clearly he is not afraid of me.  He hates this story....."Sorry, I said, this will be told FAR and WIDE."

Nolan - So, Nolan did not have a lot of time to adjust to going to Seattle Christian - thanks Kent.  Oh, sorry, I meant to think that....  We go to open house and while Nolan is in student orientation, Mason and I get his schedule.  As soon as Mason sees Nolan, he blurts out, "I am ahead of you in Math!"  This is where I am thinking, "WTH?"  Nolan goes into the tail spin for three days thinking he is falling behind and he won't graduate with honors and he won't get into the schools he wants and I am like, "WHAT?!?!?!"  So, when we are FINALLY alone, I say, "What is going on?"  Nolan, "I don't want to fall behind.  I have so many years of school to be a doctor I can't afford to do that.  Mason is ahead of me and he goes to public school.  I need to get back into public school.  Maybe I will apply for Aviation, but what if....what if.....what if...."  "Nolan, take a breath. I got you.  I would never send you somewhere you could not reach your dream and forget your brother, this is your life. Let's work through this."  So, after talking about all the options, all the things that could be, all the things Seattle Christian offers, Kent offers, and Aviation offers, we came up with a plan."  Honestly, my plan was to kill Mason.  But the "official" plan was that Nolan would go to his Math teacher and see if he could test and advance.  He did.  His Math Teacher told him to talk to his Adviser which he did.  His Adviser told him to make an appointment with his Counselor.  Through this process, we talked about it everyday.  I asked if he wanted me involved.  He said, "No, Mason did all his own stuff in the 7th grade.  I will too."  Crap, I guess I shouldn't kill Mason.  This went on for a week.  And the counselor said because they are so small they can't really accommodate that, BUT they are working on a AP level for Seniors so that they can graduate with honors because many schools and students want that.  But, here is the best part, Mom was picking him up from school because the screwed up my appointment at Cyber and it was too late to pick up.  He called me in the car.  Me in Seattle driving home and him with Mom driving home.  He told me all about the meeting, that he could graduate with honors, how he was still going to apply for Aviation, but either way he could make his goal.  I congratulated him and told him I was proud of him.  And then he said, "I think I have social anxiety because I don't like school offices."  I said, "Well, you haven't been in school offices because you are a good student, so I would let that one ride.  You will be okay with more exposure - trust me on that."  "Okay, Mom."

And there is my moment.....the one that makes me fight on......the one that says, they will be fine....the one that I put all my hope, trust, and faith in.

Happy Saturday,


Friday, August 2, 2019

A summer of ups and downs

The good part is the ups are really ups and the downs are just crappy life stuff that people decide to make more difficult that it has to be...

Last time we spoke, it was the end of May.  Was still doing Keytruda, getting ready for the end of school, and leaving for are BIG SAFARI in Tanzania with my family and Mom.  (Note:  This post will not give you how the trip was, but I can say, if someone ever says, "Wanna go on Safari?"  GO.  Don't think about, don't question it, just go.  It is life changing in a way that YOU need it most.  Africa meets you where ever you are and fills in a puzzle piece that you never know you needed.  JUST GO.) Twenty eight hours later, we came home, I did my last Keytruda before my scan at the end of the month, and went to Denver to visit Grace and her family, and to have Nolan attend his first Envisions Experience Camp.  One week later, we got home (again) and I started on all my doctor appointments.  Dermatology follow up, Dentist cleaning, Scan, and another operation on my rectum that I had several years ago called Trans Anal Tumor removal - SO MUCH FUN.  I know.....did you read it all twice.  It is exhausting.  In addition, I have been coughing up small, medium, and large "masses" from my lungs.  Now, in old 1800s movies that means you die.  These days it means that you put one in a glass jar and biopsy it.  When this started, Hank was like, "It is probably just junk, but lets see."  Well, it was some junk and some tumor.  So, much so, that it was noticeable in my last scan.  One tumor just gone.  While super efficient and a nice clean break, not so predictable or fun.  They come up after three days of coughing or in one fell swoop with blood all of my hands and tears in my eyes.  One even felt like a ping pong ball go up my left lung.

So, that is the status, but here are the results.  I will, yet again, be around for a while.  I will continue on Keytruda at the same time I will get Cyberknife on one tumor that just needs to be cut out because it is not cooperating with the Keytruda or Coughing methods.  So, more doctor's appointments than usual, but oh well.  My Dentist informed me that I need a crown replaced on one of my front teeth which I put off for a year, and she is done waiting.  My butt docs were happy with their surgery and plan, but that requires follow up also, but they are pretty convinced that my roto rooter job is complete and with the help of six month scopes and Keytruda (no coughing method allowed in this area), I will be "clean as a whistle".  I know, quite the visual, but I just got off Oxy and no I am not living in a tent.

As for me, I will be doing all this and I am fighting with the school district because Nolan's transfer was denied because of "space availability", not to be confused with "capacity" even though they use those terms interchangeably AND they did with me in a meeting OF WHICH there is no appeal process.  So, now we ask for the space availability calculations, but you know when nothing is making sense and you keep asking the question in a different way and you think you are getting closer to an answer, but you realize that it is either just the story they are feeding you, or they are just have a control problem, or if it got out there would be a coup?  This information has to exist.  Why not share?  Hell, my medical records are more available than "space availability" records at the Kent School District......come on boys....what are you afraid of?!?!?!?!  (wink wink)

Happy Friday,


Sunday, May 19, 2019

A couple of months can go by quick.....

First things first.....I apologize. I know that I am so behind on phone calls, scheduling, etc.  I do feel and believe in my core that I am a horrible friend which as a loved cancer patient you get used to.  I have been a bit overwhelmed with everyone's kindness, sweets, food, emails, and texts.  I do see it all, I do feel all the love it brings, thank you.  Please know that I have heard and seen all of them and I will get to them even if it is just to read again in the middle of the night (worst time for me).  Okay, enough of that.......

Medical Update:  I have had three Keytruda sessions.  My next is scheduled for May 30th.  I am doing well on it.  I have much less anxiety going to infusion.  In fact, during the last one, I really did not even notice that I was getting the drug.  Sometimes, I feel a flutter or get REALLY tired when it comes in, but I didn't this last time, but there was a lot to celebrate see below (Nashville and Kentucky Derby).  I do get tired especially the week after treatment, but that fades.  The most notable side effect was "dizziness and inability to make a decision".  Here is how that can play out....  It was a crazy day.  Early release, going to the passport office, Nolan being picked up by Mom, Grant coming home early to go to the passport office for Mason, finding it, expecting long lines, but not having them, Grant working from home in the the afternoon, Mason because he had new found time going to "work" at the bike shop, Nolan playing with the neighbors, etc.  The schedule had changed so many times from the anticipated schedule, I guess my brain could not keep up.  So, at one point, Grant turned to me and said, "I need to go pick up some barrels for a site." and then said, "You don't look so good.  What is going on?"  I was dizzy and I had to crouch down to not fall over.  I could really explain what was going on and I didn't really know myself, but in the back of my brain I remembered this was a side effect.   Grant said, "I am not going.  You are acting strange."  All I could say is, "How long (will you be gone)?" He miraculously knew what I was talking about and said, "Thirty minutes."  I told him to go.  "This is not a death thing.  This is a rest thing.  I will just rest."  So, he leaves.  I close the garage door and go to the freezer to get something out for dinner.  The garage door opener light goes off.  I am still standing at the freezer, but could decide what or how to prepare anything in there.  I close the freezer.  PITCH BLACK - there are no windows in my garage.  I try to turn on the flashlight on my phone.  Couldn't figure it out.  Hell, I could have reopened the freezer, but that did not occur to me.  So, I turned around and slid my back down the freezer.  I'll just sit.  This will pass.  I really don't know how long I was there, but slowly I thought.  I should sit in the kitchen and I could see the light around the door.  It passed, like a thought - or did I?  Dinner was pizza.  When I told Hank about it, he said, "If it keeps happening, we will have to address it, but for now....DO LESS."  A scan will come in the next couple of months.  It is not as clear of a schedule as Chemo was.  Picking when the scan seem to be a bit more timing, blood work, even feeling.  So, we will see when that comes.  There is also more for me to do on the horizon, but that is for another day......

Life Update:  I CELEBRATED MY 50TH YEAR WITH MY COLLEGE GIRLFRIENDS IN NASHVILLE AND WENT TO THE KENTUCKY DERBY!!!!!!  Yes, I wore a hat, and the dress, and, as I learned in perfect time, flip flops with a rain poncho.  I looked great and then just wet and a little sad.  Two things on my bucket list were Tennessee particularly Nashville.  I was there when I was seven and I ALWAYS knew I wanted to go back as a big girl.  And the Kentucky Derby!  Michelli, a college friend, had devised this plan on going to the Kentucky Derby for our 50th and the plan developed from there.  Nashville Trolley Tour; the Grand Ole Opera Tour; Group pictures on the Ryman Circle in the stage; the Bluebird Cafe; air bnb; companion fare on Alaska; can everyone make i; has everyone marked there calendars; when do we send which money; where do we send the money; what restaurants do we want to make a point of getting to; what should we have a the house; who sleeps where; how many people and luggage can you really get into a minivan with hat boxes; my hat was crushable, her hat wasn't; two bought the same dress, return dress, get another dress; where do you buy the bacon and bourbon marshmallows; there is an EXACT replica of the Parthenon in Nashville; What is your heat? It is not "Shut the cluck up!"; anything with peanut butter; the beautiful relived memory of a house filled with women, the smell of hairdryers, fresh showers, bacon, and good smelly stuff (I include this because it did not smell like hockey equipment, pubescent boys, or wet dog.); hats, hats, and men and women matching attire; beautiful clothes; Abe Lincoln; horseshoe Pandora charms; mint juleps (which I am now convinced is why the South lost the war); mint juleps, mint juleps, mint juleps; learning to bet; souvenir mint juleps glasses; 12th Race; throwing tickets; looking for tickets; some happy; some really angry; freezing; driving "home"; getting warm; pack; how are we out of toilet paper?; night before good byes, 4:00am "I love yous and I love you toos."; journey home.  BEST 50TH EVER!  Two years, 30000 email, 10000 texts, countless hours on the phone, buying tickets, changing tickets and more that I never saw.......MICHELLI YOU ARE TRULY ONE OF THE MOST AMAZING ORGANIZERS AROUND!  BRAVA!  Ten years ago at the Sleeping Lady I told God (yes, I told him), I wanted more of "this".  Celebration, friends, good times, adventures....all of it.  He (and you all) did not disappoint.

Happy Sunday!


Tuesday, March 26, 2019

Well, it all went pretty good...biggest problem was me.

Grant went with me and we discussed Keytruda with Hank.  Nothing was over the might get a rash, your thyroid may go crazy so we will have to monitor that, your other organs may be attacked by the drug so we will monitor that, you may have shortness of breath, you might have nausea, you might get diarrhea (in my next life, I never want to hear that word again I have had so much of it and the word in this, I think I deserve that), and might REALLY GET HIT WITH MAJOR DIARRHEA - in that case, call.  Yeah?

So, we go upstairs to infusion.   Haven't been back there for a long time.  Not since Shelly or was it Linda.  I am 50% on those two.  Linda is kickin' it and Shelly, well, she watches from the clouds. The wait was super long and my nerves were all a jumble.  Grant was helpful and kind, and always funny. We get in with a nurse that barely remembers me, but when she does she says, "We are going EASY on you today!"  She also tells me about the drug, how it is doing great things and I will rock it.  So, the process goes......

There is a first timer next to me.  Her husband was there, and then her son (?) came.  The conversations she was having were so completely, downright, over the top, just plan stupid.  Now, clearly, I am hanging off the edge...the smells, the room, wipes, chairs, just about everything.  I want to get up a run, but I don't.  I want to cry and scream, "Haven't I given ENOUGH?!?"  But, I don't.  I just listen....."Well, I was going to go get a really short haircut so everyone can get used to my hair leaving.  Then when it comes out, my hairdresser will shave it.  Then, I would get a wig.  This is for my only granddaughter.  She is graduating from the amazing school for dyslexic children and I am so proud of her.  She really struggled in school until they found out, you know, she was dyslexic.  So, they found her a dyslexic college.  (COLLEGE?!?!  Ya didn't see that before then?!?!  Again, remember, I might be a tad on the edge...)  I just don't want my hair to be the focus and the attention taken from her."  Pause.

In come my drugs, where I used to be there for six hours with multiple bags hung and emptied into me, she hangs two: saline and the tiniest bag I have EVER SEEN.  "Keytruda" the nurse says.  I exhale.

Enter "the son" of the patient next to me.  I love how the pull the sheet tight tight tight, so that I won't hear them.  The Dad exits to get something to eat.  Grant exits to get me something to eat.  They have a menu now.  WEIRD.  And it starts again....."Well, I am not sure why Kelly (lets call her), didn't come to Christmas, but I want you to know she was completely welcome (Isn't it March?!?!  Clearly, still a little edgy.) and she is welcome this holiday too or maybe we should go on a trip."  "Son"replies, "It is what it is.  It is fine.  Whatever she wants to do she will do.  Whatever...."

I was LITERALLY so close to standing up opening the stupid "sound proof" sheet and saying, "In three days your not going to give a SHIT about Christmas, Easter, 4th of July, or anything else.  You will be happy if you can get down an egg, or WAIT, BE ALIVE TO GET DOWN AN EGG.  And, as for your hair, the nurse said it will be gone, gone, gonzo, finito, down the shower, on your pillow, in 10 FRICKING DAYS.  They know their SHIT. Forget the plan, buy a wig tomorrow, and if you think your dyslexic granddaughter is going to be mad because you get some attention for your wig - DON'T GO TO THE PARTY.  And, finally, I CAN HEAR YOU SHEET PULLED OR NOT!"  (I am starting to see why they put me in a private room for chemo....)

But, I didn't get the chance.  The "Son" left, she was alone eating and then she started to choke.......damn.  I was even calling nurses.......double damn.

There marks my true character.  I tell y'all, I am a horrible person.  And, I truly am.

Side effects for me.  Very strange stools (but really when is that been new) and gas up to be tonsils.  I will be fine, feeling good, and suddenly, my face warps and I have gas in my should blades to my butt.  Sit on the toilet and fart, poop a pebble, fart, little diarrhea, fart.....I think you get it.  Lasts for about three days, and then I am back.  I thought I got a rash, but Grant told me I just scratched my legs.....turns out he was right.  Triple damn - I hate it when he is right.  I also sleep a lot.  Naps are now necessary.

I can do this.

Finally, THANK YOU SO MUCH FOR ALL YOUR OFFERS OF HELP, SUPPORT AND PRAYERS.  I really don't need anything right now.  I am about to cook and pick up my boys.  Mason is helping me a lot.  Nolan and I are at loggerheads all the time, but he does make a mean cuppa (cup of tea).  If you are free on a Thursday, I have treatment every three weeks, and I would love the company and probably should have someone to hold me back for attacking the patient next door. Bravo Grant!  Donna is staying with me and taking me to treatment for the next one on 4/11 as the boys will be visiting Grandma Little in TO.

Happy Tuesday, Ang

Tuesday, March 19, 2019

Remember how I told you Hank was flexible until he was not....

Yeah, well, I thought I could put this off, but today I found out I start Thursday am.  Sharon said, “So when on Thursday can you come in?”  Conferences be damned.....schedules be damned.....  Negotiation over.  Thursday it is. Lots of errands, but I got the dog treats!   Wanted to start when the boys were in TO visiting Grandma Little.  No such luck.....I appreciate all the support and offer of  meals and has made me cry more than once.....let’s see what I need.....I could be okay....

Wednesday, March 13, 2019

“It is not as bad as chemo....”

How many times have people said this?  How many times have I?  If I have been absent or non responsive it is because I have been run through all the tests and more.  And here are the results..all the nine spots in my lungs are, in fact, cancer “hot”, as they say.  Too much cancer to do local treatment like cyberknife or ablation.  A systemic treatment would be better, but chemo is too hard on the body for this little amount.  So, too sick for one and not sick enough for the other.  In the past couple years there has emerged a new therapy that I know very little about.  It is immunotherapy.  But first, I have to qualify, then insurance has to approve, and then I get to try it.  Rash, nausea, diarrhea, fatigue, etc are some of the side effects.  I am supposed to go in this week to talk about it.  I am not.

I will go next week.  This week I will start to prepare my life/house for systemic therapy.  Got the windows scheduled, give the house a good clean.  Run to the goodwill and used book store, sort some of the clutter, not a lot, but make it workable.  Put some meals in the freezer.  Buy extra dog food and treats.  I have not had systemic therapy in like seven years.  I never wanted to go back, but here we are.  In addition, if I am on your calendar to do something for you, I would find someone else.  I have to drop out for a while and just focus on me and getting my boys to and from school.  Next year, they will be split between two districts as Mason will be going to Aviation.

Now, maybe I am overreacting, and I truly hope I am, but “it is better than chemo....” is still super far from normal.

I will let you know more when I do.

Be well, Ang

Tuesday, February 26, 2019

Two new Doctors and a much discussed scan...

Much has happened since my November post.  Two of my doctors retired and so I saw the replacements in December/January.  You gotta a love a new doc, full of energy, likes to see everything for themselves, reminds you how long it has been for everything, etc.  One now has me in PT three times a month.  The other has me scheduled for a colonoscopy and epi in March.  This would all be fine if my Cyberknife doc, Hank, and my scan reader were in agreement.  I went from 4 things to watch to nine (this is a "new to me" scan reader and marking EVERYTHING).  Newsflash - there is shit in my lungs - some scar tissue, some cancer, some age, some cold, dust, crap, WHATEVER.  Two of the "tumors" have grown enough to worry, OR according to one doc, "Is it just swelling from treatment?"  No one can tell.  So, we went from....chemo and your blood looks the best it has in could be nothing, but we need a PET/CT.  So, within a week, I will be going for a PET/CT, colonscopy/epi, and PT on my pelvic floor.  Friends, it just does not get any sexier than that.  Somehow I have to squeeze that in between picking up and dropping off my kids, Grant telling me "I have so much work......I don't know how I am going to do it all." in which I reply, "Buck up, no one is making you starve, making you poop, not making you poop, sticking things up your butt, down your throat, and do pelvic exercises.  Plus, we are getting paid....good problem."  I should be more sympathetic, but, you know, I just don't wanna.

On the better side of things, my family and mom took a cruise over the holidays to Hong Kong, Vietnam, Thailand, and Singapore.  What an eye opener for the kids!  It was fun, informative, and relaxing (and no one was sticking anything up my butt...).

Howie got fixed and his "dew" claws removed.  He has been in the cone of shame for over a week....but still happy and goofy.  What a guy....

Went skiing at Big White with our friends as we usually do and our extra day we spent cross country skiing only to confirm that I STILL HATE CROSS COUNTRY SKIING WITH ALL MY SOUL. Honestly, rather do a colonoscopy.  I am snowshoeing next year.

So, once I get through March and have Nolan's Postponed Birthday Party, all we will be well again and I will begin to train my new docs......ONE, ONE, ONE, thing at a time.  I will prioritize with Hank and I will do ONE AREA, THING, TEST, WHATEVER at a time.  It has worked this long....and this whatever I am doing right now is for the birds (not that I would even wish this on them - even pigeons.  I hate pigeons, not as much as cross country skiing, but I digress.....).

Happy Tuesday,