And so I go...

And so I go...after this 14 year battle my time has come to pass. The cancer that was remaining in my lungs, that had been stable and slow growing for years, that we could fend off with a whack-a-mole (thanks for that image doc) array of procedures, finally decided it was time. We won a lot of battles along the way but, ultimately, this was a war that could not be won. And while I would have loved to stay a little longer (maybe welcome a granddaughter and dress her in lavender), I accomplished what I needed to do - the boys are raised and will be good men (they know how to clean a toilet), they have travelled to many parts of the world and seen both the richness of and challenges for other cultures and countries, and my house is left in good order.

We are reminded of Angie's strength and character when we look back at her post from Sunday, June 10, 2007, less than 2 weeks after she learned about the initial diagnosis.

And so I go...

And so I go...before 6:00am, I will have checked into Swedish Hospital. First, to surgery to get my port-a-cath and recovery. Then, up to my oncologist's office for blood work, and finally arrive for my five hour chemo cocktail. And so I go...with my books of inspiration, books for book club, my laptop my mom got me just for this, pixy dust and stars...And so I go...with my heart clear, humor in my voice, and lightness in my step. Oh, I am scared, but not fearful for I am in the hollow of God's hand. And so I go...my husband on one side, my mom on the other, my aunt caring for my children and all my loved ones cheering me on with every step. And so I go...

We are very thankful to all of Angie's family and friends who provided support over the many years and to all of the doctors and nurses and support staff who cared for her. Your support helped her live her best life for as long as she could.

A memorial service for Angie will be held at 2:30PM on Friday, July 30 at John Knox Presbyterian Church. A celebration of Angie's life will follow from 4 to 8PM. A live video option of the memorial service will be provided and the video will be posted to YouTube. Angie's obituary will be posted on the Seattle Times website tomorrow and will be in the print edition on Sunday.

As part of the celebration, we are working on a compilation of tribute videos. If you would like to prepare a tribute video, you can upload it to the link below (you will need to copy and paste the link into your browser). We will compile some or all of these for everyone to view at the celebration. Remember to keep it light - we will be celebrating.

https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fdrive.google.com%2Fdrive%2Ffolders%2F1cSjW4uRCK20huWuEmpvlQPlkuy3TiDUZ%3Fusp%3Dsharing_eil_m%26ts%3D60faeabd&data=04%7C01%7C%7C0d8f8ee05b394e021ee808d94df6e6c7%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C637626545099444892%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C1000&sdata=N1FZX91PmgIPB89s%2F02t9EGqaEB39y0n1hsfT101CbU%3D&reserved=0

So, I DID have a procedure this week..

 I gotta tell ya, you have to be your own advocate. I contacted my Doctor’s nurse Monday night and said, “you know you said I might have a procedure this week...”. HOLY COW!  Tuesday I am racing to get a Covid rest, pre admit, etc for a Wednesday surgery.  It was just a Broncoscopy (sp), but still.  Anyway, it was to clear anything away that he did not need to laser next week.  The great part was I didn’t need to use my oxygen machine and I listened to the rain all night.  The surgery went well and I am ready for next week. Thank God for little things........

Happy Thursday, Ang

I promised I would tell you when I knew....

 and it has been until now that we have a different plan.  Yes, I am still this side of the grass.  I know when it has been too long when I start getting Messenger Messages.  I am sorry for not blogging sooner, but honestly, I did not feel like it and why give anymore meh news.  My news now is not so happy, but at least it is a plan and I am encouraged by it.  As for things since September, a lot of it has been the boys and school.  Cooking dinner, picking up groceries, doing chemo, staying home, but being relatively well.  I took off a month at Christmas time and enjoyed tasting food and enjoying our cheese plates made with Metropolitan Market Cheese.  I still shutter at the price.....half bag of cheese and fixings....$75.  Then I go back for a top off and I don't even get a Met Paper Bag to show my worldliness, and it is $45.  That is $110 dollars for cheese and a paper bag that I will use over and over again, until it is quite distasteful.  Then, I went back to chemo and had a scan and we decided to add in the dreaded pump.  I was on the pump before.  It didn't make me so sick, but it is on for three days - but wait, I get pneumonia!  Which is a double edge sword.  One, I get so weak, I cannot carry my own travel oxygen machine.  I have found there are some people that are good at carrying something attached to your face and others that are not.  My Mom is not.......no lie, she grabs the machine and just starts walking around, I catch up like an ox being lead by a rope and then we checks to see if she locked the doors and turns around on a dime and yanks me back with her.  Honestly, an ox would not put up with it.  She carries my purse now.  The good news is that the pneumonia got me sick enough to qualify for a Covid vaccine.  You see Stage Four Cancer IN YOUR LUNGS doesn't qualify as sick enough.  So, one shot down and one to go.  I have slowly gotten better, but energy and lungs are slow to comply.  The boys had to do all the cooking and the was more stressful than I thought it would be for them.  Nolan went off on me one night and for like seven minutes told me how horrible I was and how stressed out he was and I was dying, and he is not happy and I could be a much better Mom and I even admit to be a bad Mom.  Finally, I told him to stop.  BTW - I always said my kids would need lots and lots of therapy.....maybe that I wasn't Mom of the Year, but seriously?!?!?  Anyway, it ended well, I stopped being his parent for a bit.  Grant was thrilled with that.  But then soccer started - outdoor with masks - and all was well again.  Funny how exercise and a bit of sunshine will cure almost anything.

So, what is the plan, well, since I had an adverse reaction to chemo when we started the pump, we went back to the drawing board.  After talking to my legion of doctors, no one really wanted me or they thought something else may be better or they thought they had already done too much treatment and more would be detrimental.  One doc though came up with PDT or Photo Dynamic Therapy. He seems to think that this will give me a little more relief and a longer time period of relief than other forms of treatment.  I will probably have to go back into chemo after to clean up or continue, but that will be after scans.  Of course, my insurance company is not only diggin' their heals in on PDT, but dropped the scan clinic that I just started to love. Oh well.  Just another day in the world of chronic illness!  So, what is PDT, well, it seemed to be a lot like Ghostbusters, the original.  It is a three day process.  On a Monday you go into Infusion just like you were going into chemo.  They inject you with this dye.  Imagine this is the green slime they shoot to show where the ghost is.  Then on Wednesday, I go into surgery and they stick a laser down my throat and try and find the colored masses and laser them out.  Imagine this is putting the ghost into the box.  And then, quite frankly, I have no idea what happens on Friday because I was comparing the first two days to Ghostbusters, thinking that would be a good movie to watch again, but something does in fact happen on Friday that requires my attendence.  Then we scan, and decided if we do it again or there is another coarse of action.  Sooooooooo.....my oncologist said, "You know there is an outside chance that we would not have to do chemo after this."  I can't even go there.  This summer will mark three years of treatment of some sort with few breaks and no long term breaks.  So, do I need anything.  Thoughts and prayers especially the week of the 29th and probably more on Friday of that week since I have NO IDEA WHAT I AM DOING......but it may be in Ghostbusters.

A lot of people have asked me how my life changed with Covid.  Well, honestly, I added a mask.  Outside of that I have had to be more vigilant about other people.  Early on in my disease people with a cold would cancel lunch with me and I got it.  Now, I don't go to lunch because too many people's civil liberties are violated if you ask them to put on a mask. 

Final thought:  Fourteen years ago in May, I was told that I had one of the most deadliest cancers when found in late stages and then I was told I was Stage Four.  I was 37.  No family history.  I didn't choose it.  I prepared for treatment, got a port, and got childcare only to have my children go live with my Mom an Dad while I had the pump on because my kid's doc didn't know what chemicals I would be giving off.  I still remember handing my Mom my four month old.  I was isolated, sick, weening, and it hurt so much I couldn't move.  I drank warm energy drinks (because cold felt like knives going down my throat) to keep up my body mass and I was on so many steroids I would not sleep and think of all the ways I could make the transition of my death easier on my kids and then as quick as those thoughts would leave how I could make the my life easy on them while I lived.  If I was told back then, there was a vaccine that was new, past all the CDC test, that would give my kids back to me, and that may cure me or at least weaken my hardship, I would have run to it.  You would too.  

Happy Thursday,

Ang

So, off I go to a PET scan.....

Hey, so I know it has been a long time, but life is rolling along.  Bumpy at best with all the things going on.  Our transition from school to summer has not been good.  Well, let me say, my boys still think that I should do everything and they are on vacation.  So, okay step back.  My boys are good boys.  I got their grades which they manage.  I don't even know how to logon to their weird portal.  Mason 3.6 at Aviation no less and Nolan 4.0.  I have nothing to complain about EXCEPT they seem to think they are on total vaca.  I made a recipe for Mason.  Remember, I am in seven months of chemo and I am hit or miss with flavor and tasting food (I know one of the symptoms of covid.....people remind me of that daily) and he said, "Mom, the next time you make this it will be much better."  I was like, "Make it you frickin' self!"  Of course, I meant it in the nicest and kindest parental way.  Nolan is, of course, Nolan.  Everything is a negotiation.  "Why do we have to do poop patrol?  Oh, Grandma is coming?  So, she doesn't really roam around the yard, so we will just do it to the table......"  End of discussion (for him).  The next dialog probably won't make it into a parental magazine anytime soon.  So, with all this energy and sibling rivalry, I have started a every other day bake.  So, they have to bake something every other day.  Banana bread, cookies, scones, anything.  I call it baking.  Grant calls it bickering and baking.  I stay upstairs until it is over.  Grant goes to work and makes specialty coffees in the midst of it.  Sorry Grant.

And then, during my chemo which I love when they say, "Oh, that is your week off."  And then they schedule a PET Scan and I have my shot that ravishes my back all week and then I can't eat carbs for a entire day and then I get a scan where I fly home from because I have to be on the toilet for hours, but, yeah, that is my "week off".  It is totally restful and awesome - like a spa.  PET scan Friday - result next Friday before chemo meanwhile I have a major accident during the prep.  I always thought I could get through in, but no.  My new oncologist likes going over it in person.  I like staying home and ignoring I have cancer.  So, I am not going in for results, I will just go it for the chemo appt and see him then.  Don't get me wrong, he is lovely.

And then.........I get a call from one of my team of docs.  This is a great scan!  Only four points and we many be able to do them with radiation?!?!?!?!  I am like, "Wha?"  Okay, but Soma has to agree, have you talked to him?  "I sent him an email."  The only thing I have for that is this....."Wha?"  Don't get me wrong, I am THRILLED with the result.  This is the best thing I have seen in YEARS!  My family is tepid about it, but they are not really excitable.  I wish they were, but hey, you can't have everything.  So, my understanding is that they are all discussing and deciding what to do and I will find out on Friday before chemo.  YAY!  And YAY me!

So, on Friday, I go in for chemo and to talk to my oncologist.  Well, it is good news, BUT, I may have had more than I can stand of radiation making that therapy obsolete.  So, basically if I can do radiation, I will with a test that says my lungs can do it.  Then, I will continue on the chemo that I am on.  OTHERWISE, I will go back to to my originally chemo that kicked my ass every other week.  And that is when I cried.

And finally.....there is this moment in the morning when I wake up that I am not aware of the world yet, but I think...."Oh, it was just all a bad dream......"  and then I pick up my phone.  I know that everyone is casting their opinions.....thoughts.....dreams.....hopes.....disappointments...., and I am trying my best to educate and stay on top of the developments.  I watch GMA3 What you need to know every weekday.  It really gives good and insightful information.  Then I watch the TALK which keeps me current in a world that I am not current in.  Then, or before, I watch the local news and then I get on with my day of bills, food, cleaning, plants, laundry etc.

We will see what happens, I am hopeful that it is as good as they believe, but inside my heart I reserve a little piece of doubt.   I have to so I can survive.  We come into this world alone and we leave alone.

Happy Monday,
Ang

Dr. Soma entered the room and says, "Well your scan was not satisfying."

I kinda knew that.  Too many oxygen issues, too many pains, too many weaknesses.  So, the tumors in my lungs have gotten smaller, YAY.  There is a gray mass in my upper right lung that they now need to follow, but I have been having sternum pain.  Before in October, when Dr. Flashy (Gordon) worked on me I was hospitalized with severe sternum pain. He believed that his process activated it.  Well Flashy, I think you are off the hook, not that I put one on you.  I could breathe so much better I wanted to kiss you!  But now it is back, not as bad but annoying and with the scan we may now know why.   This is why EVERYONE needs to stay on top of their treatment.  It is easy to ignore.  I personally hate it.  BUT I have seen more of my boys, my family, and traveled all over the world with them because I fight.  My eldest is so surprised at how calm I am in chaotic markets because I choose tours that show us that because I love them and so does my family.  He says, "They touch you on the hips and moved you.  Doesn't that bother you?'  I reply with, "I traveled early on and found that people are really kind, but you have to open.  All the people at the SUPER chaotic fish market were looking out for me and doing their job.  I have to let them do it.  They also never asked me to put away my camera which was an honor.  We were allowed (by the fish sellers) to go all the way to the end.  That was the biggest compliment of all."  I don't want my boys to be afraid of travel.  When I went to Mexico to volunteer after college, I was not only escorted in Spanish at the airport.  I got a six month visa, not a three, because I knew "how" to ask.  And when I was dropped to my driver I asked why the officer spoke to me in only Spanish and my Spanish was BAD.  He replied, in Spanish, "You were very comfortable here.  I knew you loved or lived in Mexico."  I hugged him and went with my escorts.  Love was the right answer.  I have been treated amazingly in all countries (outside of France during a train strike - where TOURIST INFORMATION WOULD ONLY SPEAK IN FRENCH.  Mom was able to ask the questions and we both could get the answer and for some reason I could understand the train station intercom because they were changing tracks all the time.  Not going back there.......)

Anyway, so beyond teaching my kids to not be scared traveling.  Also, teaching them the ins and out of remote work.  Things have been okay.  I will continue to Chemo until Julyish and then get a consult with Cyberknife and Dr. Landis after a PET and if my Sternum sites are hot.  I told Dr. Soma, he adores me and I adore him, so be prepared!  Dr. Soma is like, "Great, so I am going to call him, ask him and he will want to see you next week, when I need him to see you in July."  Pretty much, "Yup!"

Not the news I was hoping for, but pretty much expected.  Next time I will tell you my plan if I had a two month to live scan.......has to do with living legacy and righting wrongs......Soma said, I will live past November so it is probably out.  DARN!

Happy Friday,
Ang

Here is what I have to say.....

So, I have been living in this pandemic as you have.  I have been Netflix bingeing, Prime bingeing, and cleaning out my office.  I have done Christmas Cards, Christmas Gifts for 2020, and will probably do something else I have not thought of yet.  My kids need me a little because they don't know what it is like to work remotely.  I do.  Can't send six attachments to one email.  Might want to check if your recipients can accept attachments.  All the inconveniences of working from home......

And then, I read things on Facebook and the Internet.  People will not go back to work because they are getting more on unemployment with the Covid 19 supplement.  Or I can't afford the medical bills from Covid 19 so here is my gofundmepage.  Etc. etc. etc.  Pause.  Breathe.  Swear.  My husband and I hit a horrible financial burden two or two and a half years ago.  There was no unemployment, and least of all a subsidy for it.  I still had cancer. I still had bills.  We were stressed and we NEVER asked for money.  We figured it out.  We borrowed against the house.  Now, we are fine and even more than fine and I am shocked at all the help that goes to those for Covid 19.  Our demise was just like anyone else's, bad timing, home repairs, illness, medical bills, etc, but apparently cancer doesn't matter even though the bills are JUST as GREAT.  The most we have even spent is $19,500 in one year.  And that is every year - just the highest.  Our bills are real, but just not popular.  WHATEVER.

Then as I am reading like we all are and people are "learning how to cook" now because they have the time.  REALLY?!?!?!?!?!  When you rent an apartment or a house there is this thing called a kitchen.  Have you never thought to maybe on the off chance turn on the stove and see what it does?  You are paying for it........OMFG.  When I left for college I didn't know a lot about cooking, but I understood kitchens and grocery stores.  I now know that many many people have no idea what those are.  As most of us, we had to learn.  I didn't not learn from my Mom, she sent me to my Grandma's.  I could have taken Home Econ, but I qualified for Shop because I knew enough about cooking and sewing to go the boy route.  So, during a pandemic, FYI, it is not the time to learn how to cook - you should have been curious about that before - it is the time to be creative and cook the crap in your freezer so your family will eat it.  On the other hand, great that it took a world wide pandemic for you to do oatmeal.  Don't stir by the way - SERIOUSLY.  Add blueberries, brown sugar, and cream.  DELICIOUS!

Also, I shaved my head today.  My hair has stayed in for 14 years.  Over the last 6 months it has slowly come out.  Today, I was done and while I had ordered a shaver, Grant told me his razor could do it, but not well.  It did fine.  I took a picture of the remaining hair and it was a lot, but I looked ridiculous.  Better to own it than to fake it.  For the first time in 20 years my hair is shorter than my team mate Carol Clingans hair!  HA!

So, I guess I am ending with learn from this........cooking, saving for a rainy day, illness, etc.  Keep thinking about what is important even when things are good.  Health, living within your means, and family - chosen or fraternal.  Ten commandments work too.  Be well.

Happy Tuesday,

Ang

Life during a Pandemic

LOTS has happened to all of us since my last post.  I, just like all of you, have been swept up in it.  I watch too much news, I roll my eyes at our leaders yet are thrilled with others that have taken the lead, and I actually even like my governor for standing up to the crap from back east.  I think most of us are doing fine and the couple I know you got it are managing.  Of course, economically this is not great, but I have a pantry as I hope you do. We have food and it is not like an earthquake or tsunami that takes out all the infrastructure.  It feels a lot like the ice storm in the late 1990s.  No power, no planes, no cars, no travel, no nothing.  And that is where we had to cook on the porch!  Of course, this is MUCH longer and MUCH higher stakes and MUCH more wide spread.  I am proud of the job we are doing and the way we have altered our lives.  My neighborhood is great as usual and we leave things on porches and let others pick them up.  One of my neighbors put his house up for sale because he got married and moved to North Seattle.  Only one couple has looked at it and I did not do my normal "sales job" because of social distancing. :)

Because of my cancer treatment, I am taking social distancing VERY seriously and at the beginning my Mom was a little cavalier about it.  "It is just like the flu..."  And then I said, "Mom, if you get sick, we cannot care for you." and "If you keep going to Walmart, Costco, TJs, etc., you can't come here." which she listened to, but finally succumbed later.  It is hard to keep that woman down.  I almost put her in a time out!  Since, she has been a model citizen, not because of me, but because it is best for all of us.  They say this hasn't happened since 1918 which I have read tons about of late, but we have had scares.  One Polio.  That was HUGE.  Then, AIDS.  SARS.  Covid 19 is a scary thing and, as I have said for 13 years, I would hate to die of the flu when I had Stage Four Cancer.  Some people (my Mom and Husband) are CONVINCED that I had it in January when I was hospitalized.  No one knew what I had, they were throwing drugs at me and taping oxygen to my face (cause I was pulling it off).  It is not their fault.  I was delirious, so what did I know?!?!?!  I thought rats were running up the curtains and it didn't bother me in the least.  Not the signs of a sane person.  I don't think those are the side effects of Covid.  But in any case, I am looking into it, at the request of my family for COVID antibodies so that they can know and I can recklessly go in the neighborhood free of fear.  LOL.  The part about that that scares me is how many people did I infect and I didn't even know it nor was in the right mind to know it.....it truly scares me.

Some good news is, I have completed most of my Christmas gifts for 2020.  The boys have helped me put them together and no we just have to do the perishable ones later.  During this time, Mason got in a fight with the sewing machine and split open his finger which I butterfly striped.  Grandma always said this was the toughest sewing machine on the planet.  She was right - not a mark on it.  Mason is not good with blood, cutting, etc.  I cut my finger and thought, again, we should go to the ER.......but you can't!  So, I cut off the flappy part which was hard because of all the bleeding and nursed it.  Because I am on blood thinner, it bled for two days straight.  It is good now.  Happy and healed, but it was a bit touch and go and I still have to get all the blood out of my sheets.  Can't know what is happening when I sleep!  Mine actually looks better than Mason's except for there is a slant in how my finger grows now.  OPPS!  Dad taught me the method.

On another note, I am also doing my 2019 Christmas Card!  Lord knows I have time.  I have been plowing through my study and catching up, but also I have done a fair share of binge watching and game playing with the boys.  Nolan really did not have a break.  Private school just went plowing ahead.  Teachers available 10-2:30, assignments due, etc.  Mason is getting to that, but only because the OSPI guy is requiring it now.  Mason, however, has been busy the entire time.  He is the one that has a million projects and tons to do.

What I have also learned is do not update your will during a pandemic.  It seems like a good idea because you have so much time, but it is very, "we are all gonna die......were not gonna make it...." attitude and it just makes things weird!  DON'T DO IT!

Last thing, is that I am okay.  Treatment continues to happen.  Hank did retire, but I like my new oncologist who was with me during the January debacle on the weekends, so you have to love his tolerance!  It was funny because he said to me, "If you want to go home because you feel compromised, I understand and your cancer is stable enough that I think that is okay."  This was last Friday RIGHT before treatment.  I looked at him and said, "My blood is good, I put on make up, and this has been my only social outlet for two weeks - I am staying!"  It looks like they might shut down the cancer center to stable and routine patients like me in April.  The peak of the pandemic.  That is fine, but let the pandemic decide my break, not us.  However, I do get how sad it is that I LOOK FORWARD TO GOING TO THE CANCER CENTER FOR TREATMENT !!!!!!!!!

Be well......be patience.....exercise.......cook......play board games.....love one another.

Happy Thursday,
Ang

So, I was going to post

but then it got very emotional with lots of feelings like anger, sadness, bittersweet joy, and tears......so I didn't post it because it scared me as much as it would scare anyone else.....and then I did my taxes. Cue fading cheers into darkness and quicksand.......

Here is what you need to know:

FIRST, thank you!  Thank you for all the meals, gift cards, (even a Starbucks card!), etc.  It keeps up running and the boys strong.  Mason is currently finishing up hockey and playing Baseball for KM.  In addition, he is in Driver's Ed.  HE IS NEVER HOME.  Nolan made the AAU Basketball team in our area (THANK GOD) and our commute to practice is 10 mins.

Second, THANK YOU!  Thank you for all the help getting my kids to all of their stuff.  I particularly lose steam at 5:00pm.

SCAN - I had a scan and it shows some traction.  The tumors they were concerned about have stopped growing; the ones that they don't know are tumors may be growing, but they may not be tumors (WHATEVER!); and my CEA number is way down and approaching normal levels.

Future - We begin a with the last chemo, I will most likely lose the last 1/3 of my hair and we keep going.  I start again on Thursday.  The schedule is two 3 hours treatments a week from each other for two weeks and then a week off.

Okay, that is what you need to know.  Do know it is not without feeling that I had on the written page, I just choosing to focus on the "living" ones.

Happy Tuesday,

Ang

Home

Home....I have been here a lot since discharge from the hospital, Home Health Care came and then are done.  I loved the nurse, so it was nice, but I still home.   Now that I think of it, the word "home" and "jail" both are four letter words.....but I digress!

I met with Hank last week.  He is happy with my progress but I need to time to be at jail....sorry, I mean home, so I will do a scan on the 17th and then meet him with on the 6th of March.  He encourages me to stay home/jail, jail/home, jame, hoil, whatever you want to call it.  So, for now, I am resting.

Thank you all for the great response to help out.  This round is all taken care of, but toilets get dirty and plants grow, so I will let you know.  Thank you again!!!  The sheer volume of support is great.

That is it for now.....send good thoughts for me resting at hoil....

Happy Wednesday,

Ang

Delusional

So, weird.  Not had this happen. Let's start at the beginning.....

Our family was going on another Christmas Cruise.  We went to Thanksgiving at our friends house and we briefly made a Christmas wish before we left.  I packed lights and for the room on the cruise ship to give the right look.  The cruise ship is totally decked out.  It is pretty impressive.

The boys were frantic to get their work done knowing we would have only two times to get internet (Dad's work) to get their stuff done.  The time change was brutal.  12 hours difference.  OUCH!

First Singapore, then Phuket, Sri Lanka, Goa, Cochin, Mumbai, and Dubai.  Oddly there was not a lot about shopping, but I did get a fair amount of things.  I started to get sick and needed cough drops.  I engaged the first person I could at the market.  I only had US dollars and I just needed cough drops.  After the first person engaged me  (who studied in Baniff, Canada), another older gentleman engaged me and said I was being ripped off, I said to him, "I don't care.  I am sick and have to get through this trip."  He  took a step back and said, "I will help you too.  I am so sorry you are sick."  Little did he know.  By the end, I had cough drops and bubble gum for the kids and two hearty, beautiful goodbyes.

I kept getting better, but by the last day, I said to Grant, "Just get me home."

Got home.  The flight was AWFUL.  I was fine until the kids to the side of me were screaming for 11 out of 14 hours.  And then the poor woman was puking at the beginning of the flight.  SERIOUSLY.  I was going to help out the family, but then I saw the 18 month slap her across the face and nothing was done which meant I was done - this is a parenting problem NOT a kid problem.  Has she not heard of Mommy Code?!?!?!?!  Plus, you have to be trained to scream that long.  Most kids collapse.  I had one day to recover and then off to chemo.  Chemo went well.  Numbers were great all was good.  Then three days later.....

This is where I start to lose my memory.......I got an infection in my blood.  I saw weird things like bugs all over me, dirt in my kids room, little toy men....luckily the friend that I said, "Come if I call you no matter what!" clearly that statement with others that knew what was going on!

Two weeks I lost.  I scared many.  I made many laugh.  I made many cry.  I am sorry.  They say you don't die of the cancer it is something else.  I don't want that something else.

As many of you are asking, "How was the trip?"  It was great.  We really just let go this time.  We have learned to love ship days, we swam, enjoyed the music bands, the talks (I am so into those - you learn so much!), meeting up for lunch and dinner, etc.  We played a lot of cards.  You should have seen Grant's face when I played a combo of rules that I thought was okay and he did not.  He was almost stuttering......."You can't do that...."  I explained that my Grandma did.  Pause.  So there it is - piss me off or my dead Grandmother that would follow him until death.  He took the high round and stayed mute.  We clarified the rules and played happily after that.  Nobody wants Virginia on his/her tail.

So, I am home with pneumonia.  I am trying very hard to get better.  My next trip is not until May.  We cut our trip in February to the Taj because of all if this, so I can heal for a while.

As for help......The meal train and Grub hub have been AMAZING.  THANK YOU.  My boys have not been hungry for weeks!  Other ways.......we need a little yard work email me if you want to do that (a.clarno@msn.com), and I could use some housework help again, email me at a.clarno@msn.com.  Thanks!

As for now everything is on hold until I get better.  I see Hank on Friday to make a plan!

Happy Friday, Ang

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 now...no 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.

Best,

Ang

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

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 judgement....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 room......so 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 send.....email 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,

Ang

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,

Ang

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 story...so, 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,

Ang

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,

Ang

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.  https://www.mealtrain.com/trains/1g3gw5  For those of you that have already signed up or send me a gift card, I am thankful and humbled.

Okay, enough of that shit........here 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 blender.....like 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,

Ang

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,

Angela

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!

Ang

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

Grant went with me and we discussed Keytruda with Hank.  Nothing was over the top....you 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