To fulminate is to hurl verbal denunciations, severe criticisms, or menacing comments at someone. Rarely, it is used in its original sense, “to kill by lightning”.
I’m angry. I feel compelled to leave this house and never come back, just take Simon my cat, as my dear reader, you my or may not know shows me more love and pays more attention to my health and my needs than most humans do. He’s in my lap right now a matter of fact as I type this his head resting on my left arm as my two hands touch type this post. His purrs soothe my soul. His love, his trust in me, unbreakable.
I could swear he’s reading along with my thoughts. Each fragment feels like the glass from a broken beer bottle the kind you night see in a movie with teen gang members. My heart feels dark and my head feels like it might burst.
I started writing this and got interrupted by my husband whose either entered MAN-apause, if there’s such a thing, tiptoeing around his fast cycle OCD, or some such mental health thing.
But it causes several personally intrusive behaviors. First the minute I begin to do anything at all – and I mean anything, he summonses me. Unfortunately for him I learned the word “no”at about the age of six months old and I’ve become remiss in using it as often as I should to create comfortable boundaries with walls and not lines in the sand. The kind that would keep an entire country safe from intrusion by foreigners.
But I love him.
Instead of giving into his bullshit request that I search the house for a specific pair of scissors he wanted to use, I said no I am busy. So rather than fight I offered up a bath of sandalwood and orange and put a hot cloth over his eyes.
Recently a pair of rats who snuck into the side of our house but poked their heads out to be snatched up by the visiting red tabby Rocco. who’s got only 1/2 a tail but says hello to Simon every night. At the end of Roccos tail is a white powder puff where it was either broken or bitten off but he’s adorable and the two of them talk through the window about whatever cats discuss.
Simon is a sable Tonkenese mistaken for a Siamese by the uninitiated has the vocabulary of an old English teacher and yaks it up while Rocco listens very intensely- Simon must be very interesting I’m sure although at 3 am it can become very difficult not to ask him to turn it down. That’s life here in the high foothills of the Sierra Mountains just about 45 minutes west of Lake Tahoe.
Craig is another species altogether – OCD and is on the borderline of mild Aspergers – he’s brilliant, plays guitar better than professionally trained and professional musicians, can ski downhill like an Olympiad, but try to leave our house whilst he’s explaining Schrodingers Cat to you and you will never make it home but you will not only know whatever it means but you’ll be able to explain it to anyone else as well – with a heart bigger than the fullest moon you’ll ever see. If he cannot solve a problem he will go into an anxiety produced depression. Therefore the poor man gets sooooo angry when im unwell.
Before it became clear to me I’d not have the energy to do so I always wanted to have tiny houses around a large house and be able to allow women with metastatic cancer to live in the tiny houses with her pets or whatever and use the large house when they needed to or had guests etc. And also be able to have retreats here.
But unfortunately my energy level will not allow for that to happen. It certainly would’ve been doable. I actually put a lot of research into how it could be done and because tiny houses are viewed as RVs or caravans for my UK friends, you don’t have to pay property taxes on them.
So it would’ve been quite easy to do and relatively inexpensive. Craig knew in his heart that I would never have that energy and the people that I would need to do it with weren’t available to me either basically because of where we live and because of my health. Covid of course got in the way. So that dream went to the wayside and I had to accep it fairly early on after my diagnosis. This house would’ve been perfect for the project, too. SO much for dreams that we have no control over.
Instead of brooding, I decided to make a list of things I can control; there’s so many things we cannot control with Metastatic Breast Cancer or any terminal cancers for that matter. I cannot control the level of energy I’ll have from day to day. I cannot control the attitude of one provider to another. I cannot control whether or not I’ll be able to tolerate the side effects of a certain medication or if the medication will work to control the spread of my cancer. I also cannot control as I found out this week when I will get the readout of a critical scan to find out if the medication is working too control my cancer spread.
I found out this week in fact that when the baseline results of a CT scan that I had in March as I began the Piqray nightmare that I had cancer spread to my spleen, my tumor markers were up based on the cytology report that I was not given the results of, either. How about that for a kick in the ass. Who are these onncolgists who think they have the right to keep information from patients. It’s my information not theirs. It’s my body not theirs. So the first thing I am controlling is firing the UC Davis team except for the interventional radiology team who do a great job on my paracentesis – now needed on a regular basis, and I have a standing order for once a month ad infinitum. How frightening is that the spleen and the lymphedema were both caused by another curative – radiation.
I never wanted radiation but the potential outcome of having titanium rods in my back to hold up my vertebrae and not cause more pain seemed a logical choice at the time. Now I wish I’d waited for the new medication to work. Or not.
Some examples of what I can control:
1. Choosing my care team – oncologists can get fired. Fortunately there’s no monopoly of a single cancer center. In fact Northern California and the Bay Area and the capital corridor inclusive of Sacramento has UCSF, UC Davis, Stanford, Sutter and several privately owned companies that specialize in the oncological arts. (You like that? Art and oncology make strange bedfellows.) I fired three until I put on my big girl panties, found my now consulting oncologist, who saved my life at a minimum Of twice and listened to me until after four years and burnout he did not follow up as he once so carefully had. Not wishing to axe someone with four years of my best life possible, he and my palliative oncologist from Stanford university work with my new doctor from UCDavis. It’s working very well – my electronic files are shared between everyone, too.
2. Deciding how acute the side effects are that I’m willing to put up with
3. Insisting on making the deciding choices in my lines of treatment
4. Deciding what extracurricular activities I will participate in, with the highest impact possible to the breast cancer community
5. Giving myself permission to say no and to rest when my body cries out for a break (this can be tricky when I don’t enjoy saying no to anyone)
6. Taking time to do something each day I really enjoy
7. Breathing. Seriously. It’s the only thing I can control some days and I return to my breath to remind myself of what’s important.
8. Not cleaning the house and being okay with a few dishes in the sink.
9. Letting my husband do his thing and knowing he will do what’s best for him. Easier said than done believe me.
10. Opening myself up to moving my online friendships from tweets, comments, and chats, to phone and video calls, and post Covid (whenever that may come), to see them in person.
11. cannot always control who will feel comfortable with more intimate engagement.
12. what works and also my surprises at certain friends developing into people who matter a great deal to my emotional well being.
13. Who my friends are. Well most of the time anyway. Read on…
I have a friend who I met before lockdown and due to a personal circumstance I’ve not been able to see her or further our burgeoning relationship. She has dreams of me from another life. We were warriors together my right breast removed for use with bow and arrow. I was the head of a large group of women warriors and we roamed through Europe protecting villages etc. She said that she knows that we have been in at least two lifetimes together for the same reason.
The area in which I live, in the foothills of the Sierra Nevada mountains, is absolutely magical and beautiful. When the moon shines full, brightly shining and driving all the stars into a bright night sea. On nights when the moon hides on the other side and we’re unable to see it here on this side of the earth. There’s universal quilt of stars. It blankets the entire horizon and there amongst the Pleiades, Gemini, the big and little dippers, the rest of the objects orbiting the earth in its comfortable state just close enough to the sun to support life as we know it.
The stars arrive from behind a curtain of light and begin the show and are visible along with planets- last month Mars, Saturn and Jupiter were completely aligned one two three in a row in the very early morning sky I sat between the sun rise to my right the full moon setting to my left and the three planets bright as the biggest stars in the sky just off behind me and riding the sunlight to disappear as the sky brightened. Of course Venus was visibly busy before sunrise – she shined and winked at me – it was magical beyond words.
I’m worried about my health as much as one might expect I should be concerned. But if I give it my attention, and it’s attention better served on things like love, or travel, or being of service to other people in the world before my night comes to extinguish my sun.
My latest meditation is on becoming a unicorn – a unicorn is the term for a person who lives over 10 years with MBC and for unknown reasons remains relatively healthy and alive longer than thought possible. But medicine can’t solve everything as we understand it takes more than that to live with cancer not dying from cancer.
If I set my mind on something rarely doesn’t it happen with the exception of things beyond my control. I’ve learnt to let it go in the wisdom that only comes with age. And if my friend is right I’m pretty darned old and best to judge the current situation with a wiser mind than an emotionally enraged, unbounded mind.
For now at least its all I have and I have to rely on myself as I have my entire life.