This is the current Vanessa health update, in a nutshell: There is some marked change going on in our sister-in-the-middle/wife/daughter/friend. Your visual for this change in elevation should be downhill snow-tubing on a bumpy gradual slope, and not mountain climbing in earnest to conquer a summit.
I have no pictures in this post – finding the words themselves has been hard enough; finding the right images to accompany them felt nearly impossible.
After the pain arrived that I mentioned in the October health update, hospice beat it back with med adjustments and dose changes and suggestions to try. We’re at an improved place now – with the medication changes, Vanessa’s pain seems more controlled. It’s yet another reason I am so grateful for our hospice team, and their singular, relentless, kind and willing focus on Vanessa’s comfort.
Despite their hard work, however, V still has daily break through pain. It’s frequently her chin that hurts her, but also sometimes her back or her chest area. In these times we try to manage with fast acting doses of medicines when needed, and she wears a constant “pain patch” – and if we ever feel her current meds aren’t working, we can call hospice around the clock for a new med to try or someone to help us.
Pain is sneaky and changes things up right when we’ve got it under control, so we have to continually adjust the approach. It’s a non-stop exercise. The moments when the pain is winning are gut-wrenching and I have never felt so helpless as when Vanessa is crying out from pain, but thankfully we can usually get them under control within 15 minutes or so of the right heavy-duty meds.
Cognitively, thoughts and verbalizations and understanding and remembering are all becoming harder for V. She will substitute a close word for the one she means (like saying “ancestor” when she means “family”). Sometimes she calls Reuben “that furry animal”, not even able to place the word “dog” or his name. As these changes progress, Vanessa is losing more and more of herself, her past, her dignity. She is almost always confused, frequently upset or agitated, occasionally suspicious and sometimes lacking recognition of even old friends and family.
The most upsetting was when she recently told me about “that one man that is always here and never leaves”… in reference to Billy (who is, of course, her husband of 7 and a half years). She recognized him later in the day and knows him most of most days, but there have been a few other similar occasions where even Billy was unknown to her. In case you are skimming (and I don’t blame you, as I know I’m beyond wordy!), let me make sure you caught this pretty significant change: Sometimes Vanessa doesn’t know who even Billy is, now.
Physical functions, activities and movements are becoming harder for V, as well. A great example is going to a bathroom. Visiting the restroom at an unfamiliar place has become an intensive thought exercise for Vanessa, involving remembering the correct sequence of steps, as well as figuring out once-routine actions such as how to turn on the faucet and use the hand dryer.
Vanessa reports back most post-restroom-visits that the bathroom she just left had something broken or missing, but I suspect that really it’s a matter of not being able to figure out or find something. I have been there to see a “broken hand dryer” that was really a paper towel dispenser – and as you can imagine, it sure didn’t turn on and start blowing air when she waved her hands under it. ;)
Christina recently was with V in the bathroom and said Vanessa wasn’t understanding that where she was standing was making the paper towel dispenser spit them out automatically, repeatedly. V just stood there, obediently taking the paper towels one by one as they fed out, getting up to at least 20 before Christina physically scooted her out of the sensor line to break the otherwise-never-ending cycle.
We set her straight when we can, but for example when Billy is out with her alone (and thus he can’t go into the ladies room with her) and there is no family restroom available, then he can’t do much more than stand outside the door and hope she comes out eventually in an ok state. This makes me have such gratitude for random other ladies who know nothing of V’s current state and yet help her figure something out in a restroom. I’ve been in a stall next to her myself to hear her head out first, and then I’m there to listen as some kind woman must have seen her confusion, handing Vanessa a paper towel with a “Here honey, use this one and I’ll get another one for me”, which V responds to with “Oh, thank you very much!” It’s a kindness that isn’t even probably fully understood by the giver, but it is touching to our family in a way far deeper than the 5 seconds of compassion it takes up in time and space.
It’s not just a physical barrier for Vanessa to performing these tasks, but a mental one as well. It’s like her brain is literally losing the capability. Walking is similarly slower these days, and more of a shuffle… although then she goes up and down the (familiar) steps at her own house (with the double railings Billy and his dad installed) with relative ease, somehow! But for the most part, even walking is a challenge to her brain.
I was holding her hand at a recent Christmas party to sort of clear the way as we walked with her from one room to another. At one point she kind of grumpily said to me, “What’s the holdup? Keep moving!” as if I was stopping in front of her or slowing her down. But in truth, I was even sort of pulling her hand along in that moment, and her body was almost standing dead weight, not cooperating. It was interesting that she felt the frustration of her body not doing what she wanted it to do, but didn’t interpret it as initiating from her (internal), but instead from me (external). I can only guess, but it seemed that while her brain was thinking, “OK, time to walk!”… her feet weren’t getting the memo.
I fully expected this progress eventually, of systems shutting down, but it’s another thing entirely to see it actually unfold. I don’t think I fully grasped just what it would look like. I definitely hadn’t thought fully that it could be a function of the brain, beyond the body; I guess even when I had heard of others (usually elderly and ill) losing the ability to walk as their disease progressed, I had just assumed it was entirely due to physical reasons, like muscle weakness or bone pain or something. But Vanessa’s body doesn’t seem to be the main driver for some of these recent changes. I also wonder what other functions will slowly, or quickly, leave next. You don’t realize how much your body can just do, until it can’t. Going to the bathroom, washing your hands, eating, walking, drinking, breathing… truthfully, it’s terrifying if I think about it too much.
Although many of the recent changes seem tied to her brain, Vanessa’s body is definitely changing as well. Her legs are weakening to where if she is up and about, walking or standing, for more than a few minutes, they become unable to hold her up any more.
I recently accompanied her to a baby shower for her college roommate, and she stood up to talk to her old college girl friends for maybe 10 minutes at the end. After a bathroom break, we headed out towards our car. I was holding her waist on one side like usual, and suddenly her body went completely dead weight. She was spooked by it and not even sure what was happening, just saying “Oh no, my legs feel weird!” One of the soon-to-be-grandmothers was luckily near, and she sweetly came and helped me carry Vanessa, supporting her from the other side, as V’s legs barely “walked” (more like dragged or fell forward for each step) her body to the car. I had not brought the “just in case” wheelchair in from the car, but next time I will. Without lucking into our helper that day, V and I alone would not have been physically able to get her to the car just then.
A few days ago Billy installed several grab bars throughout the house (across from the toilet, next to her hospital bed), as V’s arms and legs aren’t able to lift her body from a sit or lay to a stand without something to hang on to. She has found them really helpful already!
Vanessa is also sometimes out of breath these days, and also has more of a purple tone to her lips and fingers, likely as her circulation focuses singularly on the essential tasks now. Hospice has brought over an oxygen tank to the house, and with it she can put in the nose tubes to get some pure oxygen pumped into her body. However she often gets agitated with the nose piece (sometimes forgetting what it is and why it’s in), so it’s just an occasional thing for now.
Confusion and frustration
Beyond struggling with common body functions, Vanessa’s body is changing further in other more fundamental and general ways. She is much more tired all the time, and much more “foggy brained” too, as we call it. She has periods of aggression, frustration or confusion, more and more often. When she’s upset, it can be from pain, which understandably causes her to lash out (as it does most of us when we hurt!). Sometimes, too, minutes of aggression seem to flow from the always-present confusion and memory loss – she won’t remember or understand where she is getting ready for, say (even if Billy has answered her asking about it 15 times in the last 15 minutes), and it frustrates her to feel so confused. So then she lashes out at whoever is around, sometimes saying things like “You’re lying! I don’t believe you! Shut up! GO away! I hate you!” and generally just not being easily comforted or reassured.
We shoot for calm, quiet, compassion in those moments, from hugging or patting her (if she’ll let us, often she doesn’t) to trying to speak in simple ways of reassurance or even just silently allowing her to vent. It’s a tiring job for us (and mostly Billy, as he’s there for it so much more) to bear. You’re trying to be loving and helpful, and this person you love may be being, quite frankly, mean towards you. But also you know it’s the cancer and not really her talking, and that she deserves to feel frustrated at the insult cancer is hurling at her breached body and now-not-fully-understanding mind.
So in that moment, all you can do is summon up the strength to be calm (much like parents try for with kids acting up)- but it still hurts sometimes to hear negative comments directed at you. It just does… even when you wish it didn’t. And I so wish it didn’t, because these conflict and anger sorts of experiences are not even remotely a thing V has any intentional control over, and she would hate it if she was truly aware that was happening.
The “up-side”, “thanks” to her memory loss, is that once good ol’ morphine hits her system, in 12 minutes she is feeling better and has no memory of either the pain flare up or her comments and feelings towards us. So we do our best to simply ride through them with her when they happen, and then we know we can settle back into better times. Most of the time, sweet, content Vanessa is there with us, in any given time. The bad emotional flare ups are luckily not a daily thing, although now unfortunately a more common part of a typical week.
This one is a symptom of this cancer that we all carry, a bit. I can empathize and only imagine how annoying and frustrating it feels for V in those moments, and we all feel committed to hold up our end of the stick/interaction as well, best we can, to help her through it. The exhaustion it causes to us caregivers feels physical, but stems from mental tiredness, too. In the moment as you’re living it, it’s an effort of working really hard (to ideally seem as if you aren’t working that hard at all!) to stay calm and speak plainly and slowly, and try to reassure a person who maddeningly follows or believes no logic of the real world.
It’s impossibly hard to be in that situation of whoever of us and Vanessa being together in the same moment as our separate people, simultaneously feeling probably all the same swirling feelings, just from different sides of the coin… terrified, mad, powerless, hurting, frustrated, sad, upset, determined, anxious, confused. She feels it all, we feel it all, and we have to hold it together in the moment to make sure we all come through it as unscathed as possible. Speaking for myself, it’s later then that I stop holding it together and fall apart in exhaustion and sorrow.
Speaking of tired – Vanessa’s physical tiredness is very apparent these days, as she’s even able to doze off mid-sentence sometimes. She only has the energy to do maybe one “outing” or big(ger) thing in a day, and then she is just wiped. Relaxing at home and watching TV are generally her preferred activities now.
As Vanessa’s hospice care team explained, the individual cells in her body don’t know they are, as a team, losing the bigger war, so to speak. Each little cell in Vanessa is CONSTANTLY in its own Braveheart moment, valiantly fighting with all its might against the cancer cells near it, around the clock, even as Vanessa herself sleeps or watches TV. Her good cells each jab and push back and fight, alongside their comrades, until then even their neighbor and friend cells get taken with cancer, and turn on them too! I imagine that if they could each get the birds-eye view, they might realize the futility of their fight and lay down their weapons, but as there is no General giving them orders, they valiantly fight, and fight, and fight.
I can be frustrated at the overly-peppy “battle” and “fighting” metaphors and language surrounding women (and men) living with breast cancer (whether they identify with and embrace the metaphor as a source of strength, or have it unwelcome-ly thrust upon them), but here’s the truth, regardless: No matter how feisty or punchy, or how NOT that way, a cancer patient feels mentally or emotionally… their physical body, without any purposeful cooperation from their mind, is truly fighting, on a cellular level. The internal enemy keeps multiplying and the fight is never ending, as long as the body is living. Each of our healthy cells gasp for survival, always, while they can.
When you think of it that way… it’s no wonder Vanessa is exhausted these days. Her body is bravely fighting for its life, for her life, and directing more and more of her energy that way as the cancer spreads. And we know it’s spreading, as the external things we can see, like bumps along her chest scars, and the bump on her eye, are definitely growing larger. With her tiredness (she’s taking more naps each day) and growing confusion with basic functions, getting out and about is happening less frequently.
(In that vein, folks bringing a meal over for dinner and company with Billy and Vanessa is becoming the most helpful way to help in person, if you are so inclined.)
As Vanessa’s body grows weary, she has less energy, passion or interest for even the small things she has most recently enjoyed. Her “Live Sincerely” sign-making and CD-listening have both slowed down considerably – and are in fact likely totally done. Computer work is out of her comprehension for the most part now, and even her vision seems to struggle when she (rarely now) tries to work on her laptop and read something on the screen. Subsequently, Billy serves as her typist and responder to folks on facebook.
V spends a lot of time in a new (to us) snazzy chair (delivered recently by hospice) that is comfortable, beautiful and comes equipped with a fancy remote that both reclines the chair and sits it up to help you get out. The chair is on the first floor and Billy’s brothers helped him move the big tv up from the basement too, so now V can avoid having to do the steps down to the basement floor in order to watch TV. She loooooves the chair and spends a lot of time in it now. Billy even noticed that the one day, Vanessa was methodically using the remote to go between reclining and sitting upright…. almost like she was rocking herself.
In her chair, V watches shows and movies, sometimes not following the plot but enjoying the action just the same. If you catch her in the right moment, she still enjoys talking your ear off, telling her touchstones of those things that still stick, like the story of Billy proposing, or that her sister Christina “can do anything and everything!” or that her sister Jess “has the best boys that I just love, more than anything”. These quiet moments together, watching TV with her or chatting, are what brings the joy to the now.
I would, in summary, say that these days are…. hard (Does that word even remotely scratch the surface?!), and only growing harder by the week. Vanessa is struggling more, and losing more, as the minutes pass. It’s heart breaking, over and over again, with the wound not healing between new stabs. It’s gut wrenching see what cancer can do to someone who should be vibrant and young and full of life.
In a way, the fog on this long marathon is lifting, as we get glimpses of what’s yet to come. As the walkers, wheelchairs, hospital beds, grab bars installed in multiple rooms, oxygen tanks and heavy duty medicines take over more of the house, it’s clear that this, and more of this, are here to stay.
I have no grand insightful words to wrap this up with today, nothing that makes the sometimes-agonizing suffering of my sister and oldest best friend, be somehow filled with fluttery, poignant meaning. I want to make it all stop, not mine it for gems of wisdom. Just sending all these words, of pain and struggle, out into the world, has been… “hard”.
Thank you for remaining a witness to Vanessa’s story. This is the hard part.