Let’s Stop Calling Metastatic Breast Cancer “Chronic”! | Nancy’s Point

Let’s Stop Calling Metastatic Breast Cancer “Chronic”! | Nancy’s Point
— Read on nancyspoint.com/lets-stop-calling-metastatic-breast-cancer-chronic/

This is an important and well written post by my good friend and part of my virtual support network Nancy whose books are outstanding if you’re just diagnosed, if you’re deciding on reconstructive surgery, if you’re a carer (better word for care giver), or have any kind of cancer.

This post, although I’m quoted in it, has quotes from around the blogosphere by some of the most well respected writers you will find – not everyone but many. I consider these people my friends and like Nancy, an integral part of my support group. It’s hard enough being so isolated by those who you thought would always be here for you and disappear as though cancer were contagious. Afraid of mortality and of not knowing what to say to us, we forgive these who don’t understand the huge delta between chronic and terminal. Metastatic cancer is terminal. We will die. Inevitably. Read on and follow Nancy’spoint.com you’ll be happy you did.

Where’s Your Mind at Night: A dive into cancer and insomnia

Terminal illness effects the mind in some not so obvious ways. If you’ve got cancer of any kind certainly you’ve done deep, soul searching, looking for your own priorities and answers to life’s big philosophical questions. Yet even if you’re not terminally ill, there must’ve been times when you thought about some deep stuff, right? I mean thinking is usually what keeps us from sleep. But for those who suffer from many illnesses and not just cancer- take fibromyalgia for instance – the discomfort from pain and aches keeps you from getting comfortable enough to rest your mind and body.

Then there’s a very big mystery of why beyond these two major reasons we with stage 4 incurable can have insomnia. Nights not spent thinking about anything in particular and not physically uncomfortable, but just laying there unable to sleep for no apparent reason. I’ve not seen any science to study this form of insomnia. I have a guess that we really want to not miss any opportunities to live while we’re alive. Does sleep really keep us from those precious hours we could be doing things we can’t do when when are dead? It’s important and restorative for our bodies to heal and our minds to write memories on the big gray hard drive.

Sleep is for the dead, or so I’ve heard it said. And then there’s the little issue of wanting to experience life well rested and in a clear state of mind. Go figure – another paradox.

I’ve spent countless hours in deep meditation. On big questionas about mortality, about the importance of “things” VS. “people”, about letting go of unimportant emotional baggage, and forgiveness of myself, others, the universe and whatever my conception of a spiritual entity is like. I’m not going into that one. It’s been wise to not bring the r-bomb onto the blog (religion is best left with the p-bomb -politics which DO KEEP ME UP most nights because our beloved democracy is coming to a quick end as is my life – with a very screwed up, monstrous, interminable metastatic thing in a house it does not belong inside killing the very body that keeps it alive – it dies with its host).

However, just the simple fact of knowing my disease will kill me someday, that death is not some vague notion of inevitability, my thoughts turn more to dying and what plans I can and cannot make. I assume us stage 4 terminal endurers have these thoughts more often than people who have stage 0 through 3 “curable” cancers. But you tell me in the comments section below since I can only assume what I do not know.

Here’s a list of some things I think about throughout the course of a night:

  1. Should or shouldn’t I purchase the larger, economy size of soap, shampoo and conditioner? Will I survive long enough to use it all especially having really short hair now?

  2. I wonder if should subscribe to magazines or continue buying them off the shelf.

  3. Is it worth it to buy a new bicycle?

  4. Does my will still make sense?

  5. Should I visit the place I want to be naturally buried under a new born redwood tree in the Santa Cruz mountains or will it make me too upset? Shall I just instruct Craig to do what I want rather than choosing the space in advance?

  6. Do I want to reconsider becoming a marble instead? There’s a company that will take your body, burn it without polluting the environment and mix it with glass to create a beautiful paperweight or set of marbles from your remains. Pretty neat. You can be carried in your widower’s jeans’ pockets along with his keys.

  7. If I’m a marble and Craig dies what would happen to marble me? Will I just wind up in some antique shop along with a bunch of other marbles?

  8. Pink Floyd or Led Zeppelin?

  9. Watching a movie or rereading a book seems heretical.

  10. Put the ice cream down or finish this here pint… Oops. Don’t ask for any it’s done.

  11. Did I choose the right adoptive parent and back up parent for my cat-son Simon?

  12. Can I haunt people after I am dead and if I can who should I haunt?

  13. Conversely I’d really want to visit people I love. There’s some serious practical jokes I’d love to play on my OCD husband.

  14. And I’d love to torture his ex wife who spent years trying to break us up and also tells my stepsons I don’t really have cancer I just want to sponge off their dad and I am a gold digger. I wish. I have some lessons she needs to learn in my opinion. And who better than someone she haunted while I was alive!

  15. I’d love to see a few more places and have some experiences yet to do. The northern lights is one. Going back to Paris and France generally and traveling all of the UK. Meeting the people I’ve only been able to interact with on my blog or social media in person to secure my friendships and make them whole. The UK trip will help a lot with that one. There’s a lot more but these stand out.

  16. Can I rent an RV and drive around the US and see my old friends one more time before I die. I don’t have the money and I don’t know if I’ll have the time. I wish they’d be able to come see me. But if I’m not worth their time and money…well should I make an effort? I’ve spent a lot of time filling and u packing a lot of emotional baggage on this one in particular.

  17. Should I get a walk in bathtub? Will that make me an official senior citizen?

  18. Do I continue to keep trying some new somewhat tangential hobbies to my current hobbies? Will I have the time to be good at anything else other than what I’m already good at? Like gardening and growing food for us – there’s a lot to learn and who’d tend fo it when I am dead?

Whats on your list of things that keep you up at night? Can you relate to my list and my thoughts with regards to why we don’t sleep beyond the two big ones – mental and physical pain?

I’m pretty upset with a few people, several companies especially AT&T, and excited about a few activities and people who will visit in the next few months. And nervous about my upcoming radiation treatments on my vertebrae.

That’s just today’s mind antics so on that notes I’m going to go ground myself on the soil outside then go take a nice long bath. Fuck all the chores today. And fuck you cancer.

Good Doctors Listen

As I sat in my oncologists office last week a young first year resident entered the exam room. I was not warned by my oncologist’s nurse – very unusual. Yet I was not worried to see him either, since my oncologist certainly wouldn’t put someone in a room with me who wasn’t capable of good quality care.

The resident began his questioning and went through all my medications asking why I took certain things and who my primary care doctor is. Yet each time I would begin to give him an answer, within 3 to 6 seconds he would interrupt me and put in his $.02-$.10 worth of self important opinion-based advice. After about the seventh question I got kind of annoyed. He clearly hadn’t read my chart before he came into the room. He had never seen me before and didn’t know anything about me as a human being or my condition – I was just another generic cancer patient to him. Just another face In an exam room. Just another woman with metastatic breast cancer. And then immediately without really knowing the extent of my relationship with my oncologist he began questioning my current protocol – and making treatment suggestions.

He then pulled up the films of my last CT scan with contrast. Why he thought this was even appropriate is beyond my understanding. But I think it was also to clarify his understanding of where I was at before my doctor came in because again, it was obvious he had not reviewed my chart, which is something I can’t stand. Just as he was starting to review my last films, “okay I’m going to pull up your scan and show you what you look like inside.” (Had I accidentally gone to the children’s cancer center?) My discomfort grew. He had nothing to compare this scan with and no history with me at all. the following occurred making me not just uncomfortable but slightly angry.

Sometimes the filter between my brain and my mouth goes on holiday. It took a brief trip at that moment.

Clearly he knew nothing of what kind of patient I am and he didn’t understand the style of relationship beteen my oncologist and I. Just as I said the following sentence, “you know statistically most physicians wait an entire 13 seconds before they interrupt the patient. You’re waiting merely three seconds. I suggest you at least give me the full 13 seconds of listening while distracted by the computer before you interrupt me.” His mouth was agape with the audacity of my comment. Don’t you just despise when someone asks you a question and then doesn’t even listen for or to your answer and then begins talking over you?

The moment I said that Dr. B walked into the room and started laughing. He’d heard the comment that I made and proceeded to correct this young resident and told him that I was an unusually well informed patient: the kind of patient who understands their illness and that he and I both worked on my treatment, not just him. And that interrupting your patients is not a good protocol at all. The resident continued to bring up my films and Dr. B said please shut the screen and let’s ask Ms. Kaminsky if she would like to review the results before we just pull those films out. It might not be a good time for her and we should find out if she wants to talk about that or not.

Of course I wanted to talk about it and he knew that. We had already had a conversation via email reviewing what the appointment would entail – we were going to talk about the films and what the next steps were going to be because apparently things were not looking as good as we’d hoped. The resident sat quietly after that and he listened to our conversation. He did as Dr. B instructed, pulling up things on the computer screen when asked to and was quiet for the rest of the rather long 90 minute appointment.

The rest of the conversation when something like this. I asked Dr. B weather xgeva was the right medication for me to be on for so long because it was taking a toll on my bones. He said that was something we should definitely look at and I asked about a new substitute medication that’s also delivers bone support I had read about in a study. He had read about the same study although neither one of us could recall the name of the medication and I still haven’t looked it up because he’s going to do all that legwork for me or at least have the resident do the work. He will get back to me on that one.

Next we talked about what the CT scan showed and it turns out that I have a growth (can’t we just call it a tumor, which is what is) on my L4 vertebrae that is going to require something different. And we were both certain what that would be. I said “Dr. B I think it’s probably time we look at some radiation.” He retorted: “why do you always jump right to the end of the conversation and spoil all the fun?”

We laughed again. The resident didn’t laugh – he cocked his head like a dog who hears his name from his master.

Now that’s funny.

But indeed I had a hunch for that day’s outcome, since my lower back had hurt more than usual. It’s always given me trouble in the past, but this time it’s different and the pain is different.

I know the only real course of action is radiation therapy. It’s pretty standard procedure for these kinds of tumors. There will be a tattoo of a few dots on my back. My mind races to the reward of another tattoo after the treatments are finished. There’s one waiting for the scar on my right 1/2 a breast of a bird on barbed wire across the scar.

Any ideas for the dots on my lower back I’m taking suggestions. Snag a permanent place on my body with the best answer – and it cannot be a tramp stamp or a follow the numbers dot puzzle.

No paint by numbers either. Get creative and you’ll also receive a free copy of my book whenever I finish it. Gogs Gagnon’s book re-inspired me to hit the pages again.

Thanks to you, my readers and my friends for suffering through yet another day in the life of a metastatic breast cancer endurer (borrowed from Rudy Fischman who’s VLog The Brain Cancer Diaries which is worth any of your limited time. Start wherever in his series you’d like it’s non linear in a way since he interviews people with all kinds of cancer and doesn’t just hack on about himself. I think found him on YouTube around episode 10 and went back to the beginning – he’s at https://www.youtube.com/channel/UC1_GCferA7W2dr5WVP2rq_w)

I like endurer better than survivor. We aren’t going to survive our cancers but we do endure.

Indeed we do endure a lot.