Pinky Pie

I hope you have not worried because I haven’t written for a while. The truth is I’m doing fine and there is not much new to report.

I’m continuing to get out more than I had been. It turns out, as I noted in the last blog post a month or so ago that even when I have low Phils (neutrophils) there is less danger of infection than with the same cell count and regular chemotherapy.

It helps that winter is over — even in Wisconsin — and we’ve been through some cycles of the oral medications to know how my body responds to it. I just need to be careful.

Since I am out more, folks are surprised to see me and that I look “so good.” I think they expect me to look a bit like death warmed over. I don’t. I’m just me.

So no news is not bad news.

Have hand sanitizer; Can Travel. Wire Hessel La Crosse.*

*If you are younger, you may not know the reference. “Professional gunfighter Paladin was a West Point graduate who, after the Civil War, settled into San Francisco’s Hotel Carlton were he awaited responses to his business card: over the picture of a chess knight “Have Gun, Will Travel … Wire Paladin, San Francisco.”

I don’t have a gun, but have hand sanitizer. Hand sanitizer is less lethal.

“But how hard is it , when we are struggling with fears, to think beyond ourselves and the present moment. Even the most responsible of us is not in a learning mode on those days, days which sometimes stretch into years, years when the quiet voice of reason is drowned out by the cries of the terrorized child within us.” — Lillian Smith from The Journey.

I discovered that quote in a separate book, The Firebrand and the First Lady that I read last night about Pauli Murray and First Lady Eleanor Roosevelt, who developed quite a friendship that began in the 1930s. Murray, a young African American woman, wrote letters to the First Lady on issues important to her, primarily race relations and opportunities for all.

In the book about Murray, I was at the point where the firebrand was in the hospital and discovered that quote, which I assume but do not know for sure, was related to race relations. I was taken by the quote because it was on the same day that I learned the results of my scans done on Wednesday.

Spoiler Alert: results were as good as they can be at this point – stable. All that junk inside me has not advanced. Has it gone away? No. But I’m told stable is a victory. I hope I have a medical dynasty of stability that stretches into years, and that the quiet voice of reason – and for me – humor, is not drowned out by the terrorized child within me.

If you know me or have been following me, you know that my mode for dealing with stuff scary and unpleasant stuff is to make jokes. I had the scans on Wednesday, and was supposed to see my oncologist this morning, but she has been out sick all week. The clinic called yesterday and asked if I could instead come in yesterday to see another oncologist. I did.

Did the need to talk to me mean it was horrible or just to explain and touch base? I worked through it during the day trying to convince myself that having the appointment did not mean bad news. I went with my son to the oncologist’s visit as Dick had to work.

Now the terrified child yesterday tries to stay calm – I took an extra anti-anxiety pill to still my beating heart. I do make jokes, but it was clear that it was not a good day for learning. It is hard to hear things when you are that scared child.

The doctor, who did not appear to know how to take my humor, said it was a win. To be stable is a win. He also told me he hoped it would stay stable for a very long time. Deal. And let me say the relief when he said that was palpable.

He also was puzzled about why I asked if I could go to my granddaughter’s fourth birthday party and whether I could participate in a Story Guild’s story slam called Luna. I can do both. I should do both.

He said the thing about the drug I take is that even though “Phils” are down once again the risk of low white cells and nuetrophils seems to be lower with this drug than with tradiational chemotherapy that I had before.  I can still fight infections despite having a mere 750 Phils to call my own.

So I should get out more than I have. Be careful, wear a mask when around sick people, but enjoy my life. I think that extra information on the neutrophils is helpful. I will be out more with my hand sanitizer and mask (to wear if people are sick around me).

So come out on April 1st to the Bluff Country Story Telling Guild’s Luna which being on April Fool’s has a foolery them.  I will be telling a story called “The Mark’s mark.” Whose fool am I? You have to listen to find out.

Read more here about Luna: http://bit.ly/2nkuOyj.

 

 

 

 

 

Today I’m writing about the Flat Something Society.

We discussed Sunday how some professional athletes like the NBA’s Kyrie Irving believe the world is flat and not round. Thus they are members of the Flat Earth Society, undoubtedly believing the ball with which they play is flat, too. They think the space program was a fraud.

On Thursday I received my liquid Wonder Bread IV treatment (builds bones; thus it is one of the 12 ways Wonder Bread builds strong bodies). My counts were good.

A gentleman came around and asked if I was interested in a free reiki treatment.

Now, I’m not a new age kind of gal so I really didn’t know what reiki is. He explained it to me and I agreed to have one as it was one of my favorite prices – free.

What is reiki? Google tells me it is “a healing technique based on the principle that the therapist can channel energy into the patient by means of touch, to activate the natural healing processes of the patient’s body and restore physical and emotional well-being.”

The first thing he did was tell me to go to a place where I was very comfortable and happy. I went to my usual place – the Passanante swimming pool.

The Passanantes were the best friends of our family going back to my parents generation and we have remained good friends into my generation and the next. Their is a fourth generation, but they have not met each other. I will assume they will be friends once they do get together.

Bart and Bertie were like second parents to us
When I threw up on an Aunt Bertie in the ambulance on the way to have Uncle Bart fix my dislocated knee once again. Her only comment was a gentle, “You really need to chew your food better.”

And when I was in the not wear a bra stage of life, she advised me that there were bras that looked like i did not have one on but would give me the support I needed. She called it the “best of two worlds bra.” That became a lifelong joke with her daughter Jean.

Look Aunt Bertie: no bra these days.

I miss summer days of my childhood and young adulthood at the pool. I remember lying on a raft and just floating away after swimming laps in the pool. Aunt Bertie always reminded me to use suntan lotion – that’s what it was called before it was recognized we need to protect ourselves from the sun and thus became sun screen.

There are so many stories about the Passanante pool and the freedom we had to go there any time we wished. I swam laps there every summer day after work. I always sat and enjoyed a diet Dr. Pepper with Aunt Bertie as we discussed the news.

Nixon was president and I had disliking DNA in my body. Aunt Bertie and I watched the news at 5:30 p.m.

This was the summer when the Pentagon Papers were published. The PP were secret documents about the US involvement in Vietnam. It also was the summer that the right to vote dropped to 18 from 21. I was suddenly able to vote. Very cool. I have not missed an election since.

Yes, that pool is my “happy place,” where I go when I need to relax. I cannot believe how much I relaxed that Thursday as Mike performed the reiki treatment on me.

I may turn out to be new age in my old bod after all.

It is not often in life that you are happy when there is nothing in that gray matter known as the brain.

But I certainly am today. The brain MRI that I had Monday revealed nothing in my brain. Whew. So grateful to be empty headed once again.

However, I did not realize why that MRI was so important. I knew mu doctor had mentioned previously that there were some tumors in my skull. This helps to explain why I never wanted to:

1. See my scans. I figured they’d scare the stuff out of me.
2. Have a total for how many tumors there are. I figured they’d scare the stuff out of me. Wait. Didn’t I just write that?

And my counts are up, too. Phills have returned to Capistrano. My son and I lived wildly today after the appointment – We went to get me new sunglasses I can wear over my glasses as my other ones disappeared as things do way to often with me. And then we went to Burger Fusion. Finally, we stopped at the library for books that have come in that I had put on reserve.

Of course three came in at once but I’m really excited about the three. And I’d like to say kudos to the La Crosse Public Library again for being itself. Heck of a job, library.

So once more, I’m looking on the bright side of life. Well, I’ve tried to look at the dull side, as I don’t get out of the house much for that bright side.

And by the way, snow came back to Wisconsin yesterday, but I don’t mind. I can watch that inconvenience from inside. However, I realize I’m not the only one on the planet and it is more a pain in the tush for those who are more active than me.

Cheers.

As usual, I was asked for my name and birthdate when I checked into the cancer center Wednesday for my weekly blood test. They know me, but every step along the way you need to provide both to make sure you are the right person. And that, of course, makes sense.

For some reason, I posed the question with the receptionist about whether if I had another name I would not have cancer. She smiled and said that would be great for everyone there but she is not sure if it would work.

Details. Details.

I then suggested she call me Edwina MacIntosh. I have no idea where that name came from, but it sounded like fun or a name of someone in her 90s. I also suggested using a different name to a nurse who drew my blood, saying,  “Just call me Ed.”

Alas, they insisted on calling me Susan. We will never be able to test my theory if this keeps up.

I was hoping for higher counts this week, but that was not the case. I dipped further below the 500 Phils that is the potential danger point if I get sick. I was at .48 or 480 Phils. Where have those fickle neutrophils gone?

I was hoping to break out of the Big House this weekend to go to an Academy Awards Party, but apparently I am better off at home. I will have blood work again Friday to see if I have recovered enough to start taking my iBrance again (I’m on a week’s rest and due to start again Friday.). We will see when I can start again. It may be delayed for a few days or a week depending on what my counts are.

While I was writing this, there was a Coffee-Mate ad on TV with the theme, “Every day is a chance to stir things up.”  It is described as, “We want to help you get ready for the big things and little things in life… Stir Things Up!”

There is a stir things up ad for commitment and I suppose  other things. I just saw one for courage involving a woman with a bald head, presumably from cancer. But it could be for alopecia or baldness.

Anyway, the commercial starts out with a woman with hair going back to work for the first time after whatever happened to her. She takes off the wig and asks her husband he thought of that look “Bald is beautiful,” he tells her. She adds, “You should know.” We then see his bald head as they hug.

Stir up courage, the ad says. Okie dokie.

But, I don’t like coffee. What should Edwina do? We don’t know how gutsy Ed is.

You can check out the ad here: https://www.ispot.tv/ad/Ahoz/coffee-mate-every-day-is-a-chance-to-stir-things-up

Yes, it’s that time of the month. No not that time. That, as well as Elvis, long left the building.

The cycle I’m talking about is not menstrual, but drug-related. I took the last of my pills today. They fight cancer by cutting off the blood supply of those cancer cells. The collateral damage, also known as a side effect, is to send my neutrophils running away in droves. They are both fickle and gutless, of course I’d probably do the same if it were not my body.

I have learned, though, that a week or so later Phils will return, thinking it was all clear. We fool them, of course. After a week or so,  I start taking those pills again.

Phils, be strong! Stay with me!

One other note, which I think is pretty funny. My phone kept giving me this notification of how long  my commute is to my workplace. Apparently, I go there enough that the phone believed Mayo Health System was my employer. I went into settings and removed that so-called job location. I’m not working anywhere right now.

But for the record, it was seven minutes travel from where I live yesterday. I did have bloodwork there, but no one handed me a paycheck.

Still in good spirits. How can I be? Why not? I just do things that I like to do at home.

It was great seeing my big brother Andy, who came from Oregon last week to spend time wiht his baby sister. I heard some stories that I had not heard before and some explanation of events from his youth. Naturally I recorded them. I don’t think his grandkids need to hear them yet. But I’ve got ’em for his kids and mine.

Healthy visitors always welcome.

I have to say the last week was tough, waiting for my bone scan and CT scan Monday to assess whether the targeted cancer therapy I’ve been taking in pill form is working.

The jury is still out on my bones, but the “take home message,” according to my wonderful oncologist, is improvement in my lungs. That is what she most wanted to see. So she is pleased. Me, too.

The question about the bones is whether the cancer is dying and what is seen on the scan is related to healing or if the cancer has not been sent packing.

Normally, with this drug scans are done after three cycles, not two like in my case. My oncologist ordered the scans early to make sure the cancer was not out of control. It is not.

And with my white counts pretty good as of Monday, it is safe for me to go to a rally Friday in support of our Muslim neighbors and against the Muslim ban. My protesting days are not over. Clearly.

I have to say my life has been on “will see” mode for a while, especially the last week as I dreaded my upcoming scans. I was terrified by what the results might be, more scared than I’ve been for months. This is not an easy thing.

And yes, I’m human. I have fears that I try to keep at bay as best I can by writing, ranting and laughing.

Cancer, of course, is too serious not to laugh. We were laughing by the end of my appointment because it is what I do.

White cells are gonna clear up
Put on a happy face
Brush off the clouds and cheer up
Put on a happy face

Take of the gloomy mask of neutropenia
It’s not your style
You’ll look so good that you’ll be glad
You decided to smile

Pick out a pleasant outlook
Stick out that noble chin
Wipe off that full-of-doubt look
Slap on a happy grin

And spread sunshine all over the place
And put on a happy face

All that bashing of Phil last week paid off and my white cells are returning. I know Phils will go away in a few weeks. But for today, I can get out of the house!

Thanks Tony Bennett for this song. What else you got for next time, Tony? I certainly hope I don’t run out of songs.

Yes, heartless Phil has abandoned me once again. This time he dipped to 560 neutrophils.

I’m busy canceling things I was going to do this week … $5 Tuesday movie (really want to see Hidden Figures) … a luncheon to honor my dear friend, Maureen Freedland with the Iverson-Frekking  Ecumenical Award … Thursday night synagogue-sponsored movie and discussion at a friend’s house… and the Women’s Sister March in Deborah, Iowa. It was close enough and small enough that I thought I could do it, but Phil says no.

Alas … I’m still in good spirits, despite Phil’s casting a rude pall on my immune system. I still prefer this side of the sod, which means taking powerful drugs and hoping for the best.

Today was going to be White Cell Appreciation Day, but it was cancelled because so few showed up.