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 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

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 love....it 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