its been awhile

Well I thought i was feeling better today but apparently it was just a temporary state and my side effects have resumed. Funny though since i finished the chemo on 11/17 and last had the other drug on 11/23.  I guess it’s still in there sloshing around causing trouble. My legs ache, i have no energy and havent gotten anything done all week. 

So i have been doing a lot of thinking.  I am sometimes too lazy to even want to write it all down at once so its dribs and drabs

Heres some things  

1) my friends, family, and coworkers have been so awesome, visiting me, sending me gifts in the mail, bringing me food and commenting on my facebook posts.  One night last week I was “in a mood” and kind of chastised one of my friends who isnt usually on FB. 

We use messenger to chat. 

I told them ( yes i will use non gender specific “them”) that i wish they did since that is how I mostly update everyone on how I’m doing- and oddly, they seem to like it. I know this person is busy but i like to think they are part of “team phyllis”.  However, you know me- I read WAY too much into things and i’m a bit codependent.  As in “are you mad at me? Did I do domething to offend you??”

this week, ten days past last infusion for Herceptin- my legs have been achy for days, i have been tired and spent most days lying in bed, except for going to a pre j appt for some blood work and an EKG. IT IS SICK-( no pun intended)  the number of chronic conditions I have   Its enough to just say kill me now, which I have considered on occassion   

It is chanuka, and like all holidays, i am depressed AF as the kids say   I know everyone has family 

The Weekend and Beyond.

10/26/21

So this morning I had to be at chemo at ten AM.  In a monsoon.   Alan had a family commitment and had to leave the house really early so I am alone today. 

 Before I left, I had to check the sump pump which thankfully is happily pumping out water. As i was driving away I realized that i never texted our cleaning lady that we wouldnt be home today so she is pissed.   I forgot to put on my numbing cream and its not in my bag so they will have to numb my port with ice before stabbing me with needles.  I told them they really should keep a tube of that stuff around for people who forget. I did not have a very comfortable weekend.  

I did have a good weekend though.  Mark invited us to lunch after services, ( he loves having people over and is an excellent and creative cook) with Alan’s cousins and Carmen, a lovely woman from Columbia who is my age but looks much younger.  We went to Moody Street to this Indian market that is huge with produce and just any kind of food you can imagine.  Everyone shops there.  Too bad I couldn’t think of much I needed. 

 Julie G came over on Sunday with bagels, cream cheese, lox, a big fruit plate and hard boiled eggs She stayed and had brunch with us which was lovely. Unfortunately I was participating in the bathroom Olympics and I got a medal for frequency and speed   It was not fun  

why am I “brave”?

I need to write for a minute about a word I keep hearing - brave.  

People keep telling me that I am “brave” to be talking and writing about my cancer diagnosis. I’m not sure why that is.  I’m not sure why dealing with a health problem the way you have to is considered brave. 

 So I thought I could write a bit about why i am not “brave”. 

    If I was brave, I would be taking better care of my diabetes.  I would be exercising instead of cancelling my gym membership after not going for five years.   I would be eating fruits and vegetables instead of candy corn. instead of crying about my life, I would be trying to make it better. 

Chemo Brain or just me?

I left a challah on top of my car, then got into

Alan’s car and went to Mark’s for dinner.  I’m an idiot. 

 Oh yeah- and Green poop.  That is all. 

Insurance Issues are Freaking me Out

 I may have a big problem. My insurance, Fallon, has rejected a visit I had with my surgeon.  She works for melrose wakefield hospital, which is owned by Tufts - it is who my PCP works for.  All my doctors have been affiliated with them for years. The surgeon works for them too.  I went through Fallon's 1800 page doctor list and no one from melr-wakefield is even listed. Tufts told me to call the billing dept but of course I couldn't even get thru today.  I thought Tufts took care of this but their referral person couldnt help me.  Now I am starting to freak out and will need to call first thing in the morning.

I also need to reschedule an appt with the optometrist in Natick where I am looking for glasses.  Nat is going to come with me, but can only do Friday.  If I manage to get everything ELSE done tomorrow, I might go with Mark to visit my dad's cousin Ed Kaufman, who is in a rehab in Belmost.  I feel badly that I haven't visited, as he is family.  Mark knows him better so I thought maybe he'd go with me.   It is great to not be working because I have actually been really busy getting things done.  Also seeing and talking to friends and family who have come out of the woodwork to check on me, call me, text me, visit me, feed me, etc.  I am not taking any of this for granted.

Update, I called Fallon customer sevice and was told that it was probably a billing error and I should wait and see if I get an actual bill.  If not, it was probably fixed.  Since this IS the second denial notice I've gotten, I'm getting a bit paranoid.  She said it had something to do with an add-on visit of fifteen minutes. If I could actually see a list of everything I've had done there, and the costs all broken down, my head would probably explode.  I'll bet every pill they give me would be listed.. 

So what takes so long??

October 5th Tuesday 

So why does it take so long? 

I got to chemo at noon today.  Chair#2. 

This place is very busy, which to me is kind of sad.  

Next week i have to go in at noon, but have my blood taken at the lab because they won’t have a chair for me right away.   Since Monday is a holiday, they will be closed, so they have to squeeze more people into four days somehow.  I also get two drugs next week so i will be there even longer. 

I was only there three hours today but the actual infusion only took an hour.  This is how it goes:

First they take blood using my port.  The I get weighed. I gained back some of the weight I lost during the Bathroom Olympics in the first and second weeks, but I am still less than I've been in ages. 

( I wonder how long I can keep that up- I AM eating!). Then we wait for the labs to come back.  Chemo nurse Allie comes to chat, checks me with her stethoscope.  Then labs come back. This time she told me my potassium is low.  I have gotten that frequently but not here. So I got a potassium drink ( like yuccky Tang!)  and she sent prescription for pills for a week.   I take other pills- 2 steroids instead of 3, a benedryl and a pepcid.  Says chemo will be in 20-30 minutes.  I am waiting.  Ate my IKEA sandwich.  I get bread and a cup of tuna, mayo and chips and i put it together.  I hear the woman next to me give her birthdate  She is ninety eight!! 

All the nurses look alike to me.  All female, cute, young, long hair and glasses and one really thin blonde.  Then there are the volunteers who are, of course, much older.  They walk around and ask if we need anything.  And there is a male pharmacist who seems to be at least 6’7”.  

Minor Side Effects

So i have been feeling so great and energetic all week, meeting Malden friends Thursday night and a Zamir friend ( Susan R) on Friday for lunch that it is so easy to forget that I am in treatment for breast cancer.   While i had complained that it seemed to take forever to actually start treatment, now I feel like it all happened in a heartbeat.  It has been about three months, I guess, since that first mammogram. 

Today was the first time all week that I felt any side effects. I was planning to go to services and had showered and dressed. ( it is easy to not realize I need to shower without having morning hair. Most of the time I swear that’s why I even bothered showering half the time) 

Unfortunately while having some of Susan’s delicious pumpkin bread, i had to take a break for some bathroom olympics.  So I decided to just log on to TBI and watch their stream. They were already doing the Torah service by 10:30 anyway and truth be told, I prefer it watching online. I also had some low grade lower abdominal cramps which I was told were side effects. I felt them all day. 

So I stayed in all day and puttered around.