Well in the final analysis, my cat scan showed all of the tumors in my liver had shrunk by 19%, the tumor under my kidney had no change, and the scarring on my spine indicated healing from what is presumed to be two spots of cancer on my T6 and T11. My blood tumor markers continue to drop drastically. This is good and onward we go. I know I should feel happier about all this but it is very tempered by the reality that it could change in a heart beat and it will ultimately not end well regardless. Most studies show treatments can cause delays in cancer progression but not overall survival–yup, wrap your head around that one while I take a deep breath.

I mentioned in an earlier blog the essay “Illness as Metaphor,” in which Susan Sontag wrote about “the night side of life,” a kind of parallel universe that opens up when a person moves from the kingdom of the well into that of the sick. This is what has been on my mind lately. In the first months of my illness I was able to maintain a normal appearance outwardly and had energy and stamina. More recently that has gone down the drain as I have fully crossed over to the night side of life. No longer able to hide my physical illness, I can’t pretend or maintain my detachment from it. Bald, fatigued, anemic and weakened considerably, I am now a full-time patient and a part-time everything else. I have a central venous catheter implanted in my chest and a tube connected directly into my jugular vein. When I am at Cancer House I look around and see that I now look the worst in the room. I guess I gotta be number 1 at something!

This last chemo treatment was by far the hardest. I have been miserable with mouth and throat sores that make swallowing painful, an inexhaustible fatigue that causes me to sleep hours and imagehours and feel no better, zero appetite, and a scaly rash on my arms, chest and back caused by the Pembro. I am on my third treatment for that which is a greasy topical steroid that is the consistency and texture of Vaseline that I have to cover my self with twice a day.  Friday night Tim said something funny to me and I laughed out loud. His response: “that’s the first time I have seen you laugh or smile in 5 days”. Yup, I am definitely on the night side.

The other issue that bothers me is my lack of independence. Truthfully, I go few place by myself anymore–the gym and work. The rest of the time I am too exhausted and need to be driven or accompanied. Even shoe shopping required Bridget and Tim to help me. Ey vay!

On the gym front I am probably going to have to give that up. It’s too expensive to not be able to participate. Twice last week I had to go home because I had so little energy. It’s okay, I will join the Y and go when I can.

Onto other less sobering things. Cancer House got a grant and now has free acupuncture at imagechemo. I like this–as I like anything that might help my nausea!!!!! They also had a hand masseuse one week–I liked that too. Now if only they would get a hair stylist! Anyone?

 

I have joined the Metastatic Breast Cancer Project–the largest of its kind. They register patients from all over and sign consent forms and gather our tumor tissue samples, blood and saliva to try to understand from the largest patient data base ever, what are the differences and similarities in MBC. It is pretty exciting to be part of something so huge that might actually unlock some fundamental mysteries that could lead to cures.  This week I got to spit in a tube for ten minutes to collect my saliva–who said it wasn’t fun?

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The student council at my high school holds a talent show each year with neighboring communities,  Talent Show for a Cause, and donates the money. This year they have very generously decided to donate to Metavivor.org. I am beyond excited about that but won’t actually be able to attend because I will be in Philadelphia for a Metastatic Brest Cancer Conference that weekend, so the coconuts will have to represent me! After the conference, on Saturday, the group is staging a Die-IN —-110 people lay down “dead” to visually demonstrate the 110 people, mostly women, who die EVERDAY in the US of MBC.  Why the social activism and MBC Project? Because I have daughters and friends and people in my life that I love who will be effected by MBC sooner or later and we have to fund research to find a cure, if not for me, than for them. The coconuts should have another 60 years on this planet.

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Little coconut is in Miami this weekend promoting Booty by Brabants with her bestie and living it up as she should. Head coconut is struggling some more with her lupus than she should have to. She officially adopted her dog, Damon.

I am enjoying, or rather my cats are enjoying the rainbow catcher Kathy sent me, Clair dropped off chocolate covered strawberries, Carol sent world-class croissants,  Elizabeth sent frozen yogurt while Michelle brought Spring flowers and little Izzie went on a cat hunt ( no bunny hunts here)! The school kids are enjoying their trip to Iceland and posting lots of pictures. Yesterday was Shannon’s bridal shower surrounded by family, friends and love as imageshe counts down the days to the wedding she has dreamed of. Today is a no school snow day which I actually appreciate—-nowhere to go and nothing to do and NO dam doctor appointments.  These are the things, big and small that get me through the crummy parts. Spring is coming, Outlander will be back on TV soon. The crocus are under the snow somewhere. Tender mercies are everywhere. Make it rain dammit.

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Love, Barbara

 

 

 

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Written by barbigelow

Wife, mother, school psychologist, cat lover

9 comments

  1. Glad for good news but sad about the way you are suffering. I admire your activism and the circle of supports you’ve worked to have in your life that are now all rooting for you. Hope we can be laughing, even if a little, soon. Lots of love

    Liked by 1 person

  2. Barbara…always difficult to hear that you are suffering. Sending love. Interesting choice of song. Not sure if I told you that my brother-in-law was the camera person for Sons of Anarchy. The blond cute guy donated 10,000 to help them at one point. Good karma.

    Liked by 1 person

      1. Yes, he worked on all six seasons, Gib and I have been on the set and met some of the actors, Kate Segal was in the bathroom with me. He (Charlie) had a promotional event and he told Mike he would give them the proceeds. I have a picture of my niece being held by him. If I can track down the post, I will send it to you. They were super nice to Mike.

        Liked by 1 person

  3. Hi Barb, I just love that you are sharing the reality of having advanced BC, and I can relate lots to the way you name your allies! Can you say how the girls got Coconuts and how T got called Blanket? I missed that, but I imagine how comforting my own husband is during this part of my life… find myself wanting to rely on him like a parent almost, when I feel really feeble. I suspect your experience has been similar? You should get a medal for writing whilst you feel so wretched, let alone going to work. This whole walk through stage 4 is sensitizing me to my needs, wants and preferences, in a big way. Be generous with yourself. I know you are with others. Warm hugs from Maine, Mame

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    1. Where do I want to be? Mostly, when I am not at work (where I feel loved and supported), I want to be home with Tim. Why? He is my oxygen. I cannot breathe without him nearby or the promise he will be home soon. Anything that takes me away from him is just not comfortable. (That’s how I started calling him Blanket, like Michael Jackson’s kid).
      My girls are 20 months apart and very funny. I started calling them the coconuts and it stuck!
      Love from Massachusetts ♥️

      Liked by 1 person

  4. Barbara – Cheering you on from Texas (via Easton). The dark side will pass and clear skies are ahead. I will be in Easton next June – would love to drop something off to you and your coconuts. Btw amazing song choice – SOA keep me and my husband entertained during my chemo treatments and mouth sores from hell. Wishing you rest, peace and clear skies ahead

    Liked by 1 person

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