Pinky Pie

Archive for December 2016

The most extraordinary thing happened today in a time of extraordinary happenings in my life. The woman who bought our old house in 1989 sent me a knitted hat and a letter with this story.

She said she was not sure how I would take this story but wanted me to know why she knitted that hat, which is beautiful and goes beautifully with my coat.

When she heard my cancer was back, she decided to knit me a hat, “But life got away with other circumstances.” Around that time, her house was creaking and making noises that she did not recognize. “But these noises were different – and louder. Even my dog was noticing, looking off in the direction of the sounds and looking at me, perplexed. Finally one evening I said in jest, ‘OK, Matt. I’ll get started on the hat.”

The noises went back to normal when she started knitting. After she finished the hat’s band, she went looking for more yarn for the band, a ball of yarn rolled across the room and stopped at her feet. She believes Matt picked it out for her and it was a perfect match to the band. She finished the hat several weeks ago and could not decide how to get it to me and whether to tell the story.

The noises came back. “So here it is, the hat I believe Matt wants you to have. As I said, all of this may be coincidental. But I think a loving son wants his mother to have this hat,” she wrote.

How do I feel about this hat and story? It’s a magical world and I love the idea of Matt communicating with this woman in the house where he lived before his death in 1986.

The biggest fear that parents have when they lose a child is he or she will be forgotten. In a very unlucky category of life, I am very lucky because Matt is remembered by many people 30 years later.

I loved the kindness behind this story. It’s extraordinary as the many supporters of me have been in the last few months. In another very unlucky category of life, I am lucky again.

I should take a photo with the hat on, but I take a terrible selfie. Trust me, you wouldn’t like the selfie – or perhaps vain me would not.

So thank you wonderful house buyer, who I have not seen in decades except perhaps across a room or across a street when I wondered if she remembered me. And apparently she wondered if I remembered her, which I did.

It’s a magical story for a magical world.

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It was not the biggest shipment, but  I now have 1,100 neutrophils, the most important form of white cells.

I don’t mean to brag or anything, but last week I had 750. It’s enough that I can start back on ibrance, the drug that is my primary fighter against cancer.

I still have “mild neutropenia.” And will have weekly blood tests to monitor the impact of ibrance on my counts. Still using Purel like it’s going out of style.

With my weekly bloodwork, consider going to the clinic my hobby, although I have other interests like reading, binging tv and playing Words with Friends and Scrabble. Oh, I also like to write stuff.

In the meantime, I have moved on beyond Blizzards – they are treats but not my primary staple of nutrition or lack of.

Cheers for white cells.  Happy New Year to all if I don’t write again before the new year begins.

Bloodwork today did not have the increase we hoped for, but my oncologist does not want to quarantine me in the house. I should be careful, but not so careful that my grandkids (and their parents) can’t come.

If you have a fever, are throwing up, or have diarrhea, please stay away. But if you are sneezing and coughing, less so. Good hand washing is the ideal for all of us. If I have to bathe in Purel, so be it.

Let the festivities begin.

As far as my white cells not jumping back, it is not unusual with the drug I take. So I will be off it for another week and then the dose may be reduced when I begin it again if my counts are not higher. It is very common with this drug. Most patients have to reduce the amount they take. In the meantime, I will still take the other anti-cancer drug.

So be of good cheer – I am. I’m taking it as a sign that the drug, ibrance, is doing its job killing of the cancer cells. The healthy cells killed along with the bad are collateral damage. My oncologist agrees.

Thanks to all for your support. It really means a lot.

A wise woman once said, “let the festivities begin.” For sure. Let’s do it.

 

 

 

 

Yes, I am crying uncle. About what, you might ask? Writing thank-you notes to everyone on the planet, give or take a country to two.

I started out determined to keep up and when I wrote the notes, I received back a lot of comments that I didn’t need to do that.

After more than a hundred notes, I lost steam. People have been so kind and generous with their time and resources. I am one lucky woman to have so many people who care about me and want me to get better. (I don’t know if there are some who don’t. No one has indicated that.)

I am absolutely amazed by that support. I have received food, a tremendous number of cards, prayers, good thoughts, teasing (which I deserve) and  other gifts as well, not to mention the amount of money people have shared to help me through this insurance and medical crisis. I have heard from people from my childhood and high school.

I must have done somehing right in my life to have all this support. Or, I have fooled a lot of people.

Please know that I appreciate everything that has been done for me. I’m sorry that I have not written notes to everyone.

 

Update — my digestive insides are doing better. The heartburn is all but gone away and my insides are finding a way out.

Won’t know about the cancer – other than my white cells have bottomed out. Scans next year sometime to see whether the tumors have shrunk in horror.

I like that picture of the tumor gasping their last breaths – which kind of maes sense because the drugs cut off the tumor’s oxygen supply. Starve cancer cells, starve.

No more details about my insides. I’m trying to be delicate. Not successful in that, but what the heck.

 

Back when Matt had his bone marrow transplant in 1986 for leukemia, there was a time when his immune system had been obliterated through radiation and chemo that we were on tenterhooks waiting for the white cells to come in along with rebuilding the rest of his immune system.

Our good friend Nancy Weiss sent a small plastic case filled with hole-punched white cells. It made us laugh and was much appreciated, along with anyone willing to do the White Cell Dance with us. However, it took a few more days for those white cells to actually work.

And they did.

Why am I writing this? First Matt would have been 39 on Sunday and I feel bad that I didn’t write anything about him that day, although I certainly felt it. As I frequently say, in an unlucky category of life, we are quite lucky. We may have lost him, but he is still inspiring to kids (and adults) thirty years later.

The other reason is where the heck are my white cells? They have all but vanished, thanks to the chemo I’m taking. If you know counts, you know 17,000 white cells is not exactly high and the same for 900 neutrophils.

I prefer to think of it as a demonstration that those fancy drugs I take are working than to panic over how low my white cells are (but will recover during my week off from one of the drugs). Not being  able o go out and party for Christmas is an inconvenience, not a calamity.

My mom used to wonder after hearing the expression, “Now is not the time to panice,” how we would know it IS the right time. Would we get a memo (or email or a text)? None have arrived.

I have never been a great partygoer anyway. Staying home and binging TV, reading, and writing make me happy, aong with being with friends and family.

Until my cells recover, keep your germs to yourself – don’t come see me if you are sick or think you may be coming down with something. I don’t want to get sick before January 1 when my new insurance kicks in. It’s good to have illnesses on a schedule and I wish I had planned accordingly this year. Timing, my friend, is everything.

I will write again before the holidays, but whatever you celebrate, I’m hoping you enjoy it. A lot. Party hearty for me.

 

This one falls into the category of too much information.

But a drink that I wrote about with my last chemotherapy is back again. We called it the Slider – vodka, juice and drum roll … mineral oil.

Ah. Hoping for the best.

Gak.


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