Posted on November 12, 2016
Posted on November 12, 2016What's Coming Up (a long overdue update from Carolyn)
Yes, it’s true. I’m still not home. I left home April 23rd and I believe I will still be gone Christmas. Maybe longer if I need surgery—or surgeries.
My husband tries to stop by just before dinner and we talk and watch a TV show together. He’s exhausted from his treatments and his cancer. Our dog used to sleep near me when I was at home. Ever since April 23rd, he sleeps on an ottoman near the front door. He’s on the lookout, waiting for me to come home. It’s almost impossible to write that sentence without crying. I’m afraid that he thinks I abandoned him, even though he’s been here about four times now. But that’s four times in seven months. Seven months! What has happened to us?
This catastrophe would be so different if it hadn’t hit both of us at the same time. If my husband didn’t have cancer (he’s NOT in remission), I would still hate every moment away from home, but I wouldn’t hear the tick tick tick of the clock, counting down his life. I’d know that eventually I’d get home and all would be well. But it won’t be well. And he can’t take care of me as much as I need, devoted as he is. I won’t be able to walk around. What happens then?
On the other hand, if I could walk and was “only” facing his illness, I’d at least know, in my profound grief, that I could go out and make new friends, go to events, have people over and cook, go to the beautiful office that he built, and be able to take care of myself. But, sadly, there is nothing good about this at all.
I’ve decided to write a blog about the experiences I have, but go beyond this situation and tell stories: humor, work, fascinating people I know, and all the rest. Dan Mall is designing it. It will be announced in the next few weeks on Twitter. You can find me there.
So many people have asked what they can do to help. Unfortunately, almost none of them live in Portland (or maybe we just don’t know that about each other). On the other hand, I’m privileged to have friends around the world. I feel so grateful for that. So, I’m putting a wish list on the blog and it ranges from things that cost not even a penny to things that cost more. We’ll see. Anything that assures me that as I lie here in a bed that seems a million miles from home, that I’m not alone in the world, and that I’m remembered on a daily basis by someone, somewhere.
If only I could convey to you how much I want to get home. But in-home care is extraordinarily expensive. You need to be a millionaire if it extends over much time. My bills are beyond belief now, but they are nothing compared to in-home care if you don’t have family members who can take care of you. It frustrates my husband so much that he doesn’t have a bit of energy to spare.
I’m so grateful to everyone who has given so generously here. I think of you every day when I attack my physical therapy exercises with every cell in my body. I’m the Navy Seal of lumpy, weak, rashy, bed-bound people, yelling as I strain this poor excuse for a body toward the goal of standing up, turning around, using a wheelchair again, leaning over, or opening doors in my house.
I hope I’m able to open them to let you in. Someday, soon.
Posted on July 26, 2016
Posted on July 26, 2016Have a Great Weekend! (from Carolyn)
July 24,, 2016
I’ve intertwined an entire weekend of news to try to give a picture of a morning here.
I’m letting a little more light into my room, now that I haven’t had migraines in a while. I do my physical therapy (PT) morning routine before they come to my room. I already have, after about a week of PT, a flareup of my chronic tendinitis in my left big toe and down across the top of my foot, then across my ankle. My caregiver and I have wondered if the problem with the big toe could be something else, and if so, I’d really be in trouble. Hah, as if I’m not really in trouble already. I’d worked faithfully on my exercises and with such hope only to discover in the morning that I can hardly move my left ankle. It doesn’t feel like a muscle that’s been worked hard; it feels like an injury, difficult to move and painful. I can’t lift it and it’s starting to swell. This is devastating beyond words. That was yesterday and I became chilled and couldn’t eat and fell asleep sitting up, on and off most of the day. Stress.
Why the drama?. I was discouraged the day before because I thought that the new insurance plan (I’m in a foster home, so different rules apply)—would mean that there wouldn’t be intense pressure to reach unrealistic goals. Just work as hard as you can, and they’ll give you competent, strenuous therapy until you get better.
Nope, it doesn’t work that way, or so I’ve been told. No matter how hard I work and no matter how damaged I am at the beginning, I have to reach certain goals by certain times or I won’t be covered for care anymore. Yes, you read that right. If my progress is too slow, because my condition is poor in so many ways, they stop helping me to recover. Here I am at the beginning and the low-level exercises I’m doing so diligently have already made one of my feet worse. The first goal I can think of just became impossible. I cried. Yes, yes, of course I will keep working hard—please don’t tweet me to tell me to keep trying. (Although I adore physical therapy success stories.) Remember, I want OUT OF HERE.
After a little while, if I don’t seem to be making progress, the physical therapist said, “That’s when you’ll have to really push through a lot of pain, so that you can show that you are meeting goals.” Does this make sense to any of you? Shouldn’t that sentence read, “That’s when you’ll have to really push through a lot of pain if that’s what is needed TO MAKE YOU BETTER.”
I looked online later, and unless they make a custom version, it doesn’t look to me as if the boots prescribed for me—that will stretch my Achilles tendons and calves beyond what is naturally possible—come in my measurements. What happens then? No boots, which are an integral component in my therapy? I read an article online that says that these boots don’t change contractures (my main diagnosis) more than a couple of degrees. The visiting nurse said that studies show that physical therapy is generally more effective than surgery. Conflicting information everywhere. The internet at work! Is the surgeon giving me false hope? Does he know damn well that I’ll eventually fail or need risky surgery? Am I just buying time? Or will I be able to achieve minimal function and live at home, no matter how limited? Will it be paid for by insurance or by a desperate, expensive care plan paid out-of-pocket after I’m cut off of this home health care? Did we really land on the moon, or was that a lie? I’m dizzy with the possibilities.
Let’s say the best happens and I can stand up and take a few steps in three months, which doesn’t seem likely from my current point of view. By then it will be half a year away from my husband, and time is so very precious. I saw him yesterday for only about half an hour, as he delivered things I needed and sat to have a couple of cookies with me. He was exhausted and his arms hurt more than usual. My life is bad enough, but add the time factor and the progression of his disease and my stomach is clenched. My entire being is clenched. No matter how hard you work, Carolyn, they may give up on you long before you are better enough to go home. To go home and be with him. What will I do then? I guess I will plow through any money I find, find people to move in who are just like all of you—oh, never mind, it’s all impossible. “Stop future-tripping,” my husband would say. I future-trip anyway. My God, what if I’m still here at the end of the year and it’s flu season? If the flu hit this place, my husband would not be able to visit at all. Someone, please stop my mind from overworking. I was doing so well, bringing myself back into the moment, but waking up to a setback and living with pain makes it hard not to imagine the worst.
I now have quite a few exercises to do a few times a day, and it’s great to get to work (except for the injury). In one, I put on straps and pull to stretch the back of my legs by pulling my feet toward the front of my legs. One of my hands (and the wrist) are still injured and occupational therapy isn’t approved until next week, so I have to pull as hard as I can using an injured hand. I have developed a mysterious bright red rash with small blisters on my right leg, from above my knee down to my ankle. Oh, how I’d love to post the photo I took of it. It could be the header on my Facebook page! The visiting nurse could only speculate about the cause of the rash. Hmm, that’s not quite true. She could do a swab so someone could look at it through a microscope. Oh, you silly goose! This is America! That would cost a little money or take a little time or require overcoming some other insurmountable barrier. So now we do a procedure twice a day of gently washing the skin, applying some medication probably chosen because I had some on hand, and wrapping the legs. She didn’t leave enough supplies, so we reused the gauze wrap from the night before. To. Fight. An. Infection. The used gauze. I was aghast. My husband had a fit. He said I should have called him and sent him to a store. It never occurred to me that you could walk into a store for this late on a Saturday night, or that he could go early in the morning before his medication took some of the deep, throbbing pain out of his bones. We used the one clean one tonight, and tomorrow (Sunday) I guess my husband will be shopping for what home health should have paid for and delivered. (Today I asked the nurse about more supplies, and she said, “But that would cost us money. We don’t like to spend any money we don’t have to.” Right, that’s why my insurance is absurdly high (I won’t even tell you how high)and doesn’t cover the “home” in which I live, which comes to around $8000 per month—not not to mention all my husband’s living expenses and the cost of our home and taxes. What will happen to people when disability runs out? It used to be unthinkable, even under Reagan, that both sides wouldn’t come together to keep disability (which I’m not on) going. But this past year they almost drove it into the ground.
It hurts to sit. I should be turned or given a wedge or something so that I’m not always sitting in the same position. For those of you not hip to such things, constant pressure can rapidly cause serious wounds. Bedsores. I brought it up to the visiting nurse. She said, “Well, maybe stick a pillow under one side.” When I was at home, the skin on the back of my legs felt like I was sitting on a pancake griddle. Relentless, virtually intolerable burning, from my knees up, on the back of my legs, and across my legs from side to side. Nerve pain and wounded skin, one doctor said. That’s what I was feeling every waking moment as I sat there laughing and working with many of you over the past three years or so. I’ll have to put in a call for the nurse to check me again, or perhaps have a wound nurse come. The skin looks better, but it’s only because I’m in bed 24/7. My husband has tried the recommended medication to treat his pain. His hands and face became swollen.
Both days this weekend, the two aides who are here part-time came in. They weren’t both here when we changed how I am lifted in the sling over to the commode. The one who is less experienced was the only one to see how it should be done and I am not sure he knew what he was seeing. They would lower me as I would say, “No, this isn’t right.” I’d end up in a wrong position. At one point I was landing almost flat on my back. On a commode. Yeah, that will work. Up, down. Up, down. Worse and worse.Five or six failed attempts every time I needed to “go.” I repeatedly explained the correct maneuvers. But I’ve found that patients are invisible in these situations. Finally they went for help.
Nothing like hanging way up in the air in a contraption controlled by Tweedledum and Tweedledee. (Not their real names.) They try hard, they mean well, they are kind and cheerful, but heaven help me. If I poop today (my innards recoil at the thought), they’ll be wiping me as I hang there and God only knows what misadventures await. Last time, the woman approached that task fingernails first, never quite reaching the target, as I braced myself, swaying to and fro, as the search for my body part—you know, the same damn one everyone else on earth has—went on and on. I’m a believer, as a former midwife, that the midwife or healthcare worker (yes, even doctors) is the servant of the person being treated—bringing experience, empathy, encouragement. But workers in homes are low on the totem pole of the healthcare system, and I imagine their pay is quite low. So, I have to move through my frustrations (this is a daily difficult exercise) to a place of acceptance and sympathy for their position. I hate it. I don’t feel like evolving as a human being while being skewered like a cherry tomato on a kebab headed for the grill.
After returning from the long trip to the commode (it’s three or four endless feet away), I look down at my legs. They are bruised from the heart medicine (a blood thinner) I take now, where the straps for the sling for the lift beat the hell out of me. My legs, from the knees down, are all wrapped for the flaming rash. I’ve got that area of edema above the knee that turned purple for a time in an earlier update. I have a brilliant red area that I keep forgetting to ask to have treated. Lookin’ good! How’s about a date, big fella?
Then they brought breakfast. He remembered the other heart pill this time. That was nice. Perhaps I’ll live another day to tell my tale. I’ve had the same breakfast for well over a month now, per my request. Decaf coffee. My husband brings in the ground beans, which they kindly use—otherwise I’m served Folger’s. The horror! The horror! I might die before this is all over (I doubt it—that would be too easy), but I swear I won’t go down with Folger’s in my system. A banana, Cheerios with milk, and five or six pills. Every day. Yet today they brought a tray with some atrocity formulated to make the children of the US addicted to sugar. Oh my God, I think they might have been Cocoa Puffs. Are those the little round balls that are a sort of dark golden color? What were they? Could they have peanut butter in them? I rang and said it was the wrong cereal, even though I usually try not to make a fuss. I live in a teeny, tiny world. These are Events.
After breakfast I called the pharmacy and tried to straighten out my meds, since mistakes are routinely made by the doctors. I can hardly hear the pharmacist. The guy in the next room has his TV on. He’s hard of hearing. I once turned my television on with the volume turned all the way up and I couldn’t hear what the characters were saying. He’s told daily to turn his down. It makes no difference. The Price is Right blasts through my room on weekdays. I don’t remember how the game is played, but it’s so much better than the hollow drone of the Republican National Convention that was playing for days. Ah, the soundtrack of our lives.
I turn to my coffee. By now, it is cold. The cup that holds it must have been left behind by a former resident or found at a garage sale, because we’re in Oregon. Oh, and a cheerful good morning to you, too, little cup! On the side it says, in a lovely teal, “The First Licensed Hospice in California.” Such a hopeful message for my struggle to stand up again.
I look at it and I laugh.
Names and occasional details in my updates have been changed to protect the identities of the facilities where I’ve stayed and the people who work there. If you somehow know a name, please do not reveal it to anyone.
Posted on July 9, 2016
Posted on July 9, 2016Resilience (from Carolyn)
I think I’ve spoken before of the woman who sleeps on the other side of my wall.
Her name is Grace. I hear her every morning. She moans in her lonely bed, as she drifts in and out of sleep. The only name she calls out is the name of the caregiver who runs this home—I imagine because that is the only person she sees except, perhaps, people sent by the county or Medicaid once in a blue moon. She’s headed down a path from palliative care to hospice. I suspect she's there already.
I am trapped in the next room. This is not my life. It can't be. Yet I must live it. That is why resilience is often my greatest goal, along with gratitude (so damn hard). Laughter hasn’t left me. I guess it is built in from birth. But, really, I’d like to sob, but it has never come—except for teary eyes, and there have been a few mornings when Karen McGrane has made her almost daily call to me when I have just cried as she sits in an elegant empathic silence. I don’t cry when I’m alone. I feel empty. Sometime this week there was a day when I had interactions with several truly rude medical people, who diminish what makes you human. Questions are seen as threats. They send your orders off to a place you were three years ago, despite all the time you spent filling in pages of info to update them on every detail of your life. Somehow, it’s your fault. You never receive the plan for your care, and when you ask, the response is a very sarcastic, “Well, I just assumed since you were in there with him for 45 minutes that he would have told you the plan.” Plan? I didn’t even know, despite this being my fourth request, what my diagnosis was.
Yes, I finally got one of my diagnoses. Despite being at a hospital with three doctors, several physical therapists and two occupational therapists, then a skilled nursing facility with all of the above, I had never had a thorough workup of just my feet and ankles. All that time at the skilled nursing facility when insurance stopped paying because I wasn’t improving (meeting the physical therapists’ goals) and I had to pay out of pocket? They were treating me for weakness. How do you do that? You make the patient work hard.
But that’s not what was wrong with me. I am structurally incapable of working hard.
I just found out. I have, among other things, plantar flexion contractures. From diagrams, mine looks over on the severe end of things. What’s a contracture? Well, you know people who have diseases or injuries like Stephen Hawking and Christopher Reeve? If they aren’t massaged and stretched by other people, their hands and other limbs freeze into a useless hardness, as their tendons and muscles cramp from lack of use and then stay that way. I had damaged tendons and required drugs over the years that aren’t good for tendons. Well, I’m not going to start a list of what contributed to my problems. You don’t need my medical history. Is it just from being in a wheelchair? Is it the recliner? Why did it become evident suddenly within two days in both feet at the same time last April? Why did it hurt so much that I couldn’t bear to have a light sheet rest on my feet? None of this makes any sense to me.
The time for the appointment I made with an ankle/foot surgeon finally arrived. These rides to appointments are stories in themselves. It was the day to find out my diagnosis.
When he took off my socks, the doctor seemed to look pale or ill. Without saying what I had, he said, “I have no magic pill for you.”
I said, switching to his first name, even though I’d only met him once before, “Thomas, Thomas” (not his real name), “Do you have 100 tiny pills? (meaning using many modalities of care) My husband has leukemia. I’ve been away from him for almost three months. I couldn’t possibly afford round the clock care at home. I cannot even transfer from a wheelchair to a bed. I MUST GET BETTER. I MUST GO HOME. I don’t need to walk across a room. I just need to get back to where I was before, living from a wheelchair. I MUST get home.”
He thought for a minute and then did a very thorough, expert exam. He asked questions that I now wish I had asked why he’d asked them. He finally said that I’d need a lot of physical therapy. He talked to himself out loud about pros and cons of braces in my case. Finally, he said, and I quote a sentence he probably either regrets or doesn’t remember.
He said, “Your treatment will be horrifically painful.” HORRIFICALLY.
Then they sent my care plan off to a nursing home I was in three years ago. He said to check back in a few months. Oh, my God. Three months or so to get home, if this works at all? The next day, medical people started calling my home. We didn’t know that anyone would call. This was not the phone number I gave them. A vascular surgeon arbitrarily chosen, as it turns out, by someone who is sort of a receptionist at his office, not an expert he admires. To do what, I wondered? A place that makes torture instrument boots that pull on your calves to stretch them as they push your toes and feet up toward your legs. Not a word from the substitute for my primary care physician who is out of town until September. Who is in charge? Who answers questions? No one, apparently. Go away to your horrific experience, move blindly through it, hope that it works, spend thousands on the braces if your type isn’t covered. Hope that there even ARE braces that work for you. Have a physical therapist work with you. Will they be rude and domineering? Or will they be kind and encouraging? I’ve worked with both kinds. What do I do if they don’t work for me? Will they be too rough on my chronically fucked feet and tear tendons that are too thin? I’d need surgery in legs that have the world’s poorest circulation. Surgeons would run for the nearest door. Why don’t they have me get an MRI of the tendons first?
I think of Grace, next door, who would kill to be in my sorry state. She’d love to have a tenth of what I have.
After a few days that I’ll tell you about in a different update, I spent all day today dealing with phone calls and problems. My husband stopped by for a visit. He was grouchy. Awful. We snapped at each other. Then he said, “I’ve still got the prednisone sweating anger out of me. Ignore what I’m saying. I should leave.” Yesterday he’d had hours of an infusion for the cancer. They have to add steroids so you don’t convulse in a major reaction. He’s seen a couple people in the Chemo Room have reactions and been swiftly swept out the door to the hospital next door. It changes your perceptions and reactions. I hate to say it, but I was disappointed. I wanted just the right shelves from Amazon, to specifications we’d agreed would be best, and he'd found one and now couldn’t remember which one it was. This place I’ll be for what looks like months now, that costs me in the neighborhood of $8000 a month, if you include the rentals and all the supplies, needs to be a tiny bit more homelike. The colors aren’t mine. The decor isn’t..well it just isn’t, though it’s perfectly clean. I have all sorts of things on windowsills. A box of straws, some gloves, some lotion, a book, ear plugs and a white noise machine to block out the noise from the CPAP that belongs to the guy on the other side of the other wall. It isn’t me at all. I landed here from outer space. But how can you be disappointed by someone who sweated heavily all night long and somehow dragged himself to the store just to buy supplies and cookies and some lotion for you and drove out here to see you? You cannot. He is love in action. You have to put all your wants to the side. Eat the dinner you are served. Appreciate the extra cup of coffee they made. Kiss your husband goodbye with a sweet look when you haven’t even hugged since April. So much longing. Yes, that’s it. Longing. I ache with every kind of longing. I have numbed myself to that knowledge until just now.
In Brave Enough, by Cheryl Strayed, sent to me by @beplucky (who doesn’t even know me!), Cheryl says something profound about getting on a pony, and it just pisses me off. I can’t even get on a metaphorical pony.
But I like this one:
“I considered my options. There was only one, I knew. There was always only one.
To keep walking.”
And when I think of the doctor’s words and his predictions and the depression that will settle over me in the first moment I awake tomorrow in what is not my bed or my home, I know the only way to keep “walking” is this: Be Resilient. Can I? I don't know. Be resilient in my tendons, though the road to suppleness and flexibility is sharp and painful as a razor’s edge, and in my mind and heart, through each next breath I take, one at a time.