Andee and Kirstin need help

Written by Andee, posted by Kirstin

We have just reached the point where Kirstin can no longer stay alone while I am at work.  (This is Andee - the infamous "A," her roommate, writing.)

For those of you who may not be up-to-date with the latest--the pain from the "strained ligament" in her left knee turned out in fact to be from another melanoma metastasis in her left tibia.  The various pain meds she has been given, while not helping much with the pain, have made her loopy, nauseous or both.  She had been able to hobble from the bed to the bathroom with the aid of a walker, but Friday night, the pain meds made her lose her balance.  She caught herself before falling, but simply putting weight on that leg fractured the front of that bone. 

I haven't had an uninterrupted night's sleep in weeks, and am exhausted. Although I have some vacation time remaining, I'm trying to save that for the times I need to accompany Kirstin to doctor's appointments.  Family leave laws don't apply when you are the primary caregiver to a roommate instead of a close relative.

To all of you who have wondered how you can help: HELP!!!!

We desperately need people who can just quietly be here daytimes on weekdays; having someone here for a few hours on Saturday so I can run errands would also be helpful.  If you're local and can come for a day (or even half a day) every week, that would be wonderful.  If you're from out of state and can come help out for a few days, or a week or more, that too would be marvelous.

You might need to bring her something from the kitchen when she asks, remember when she is due for more meds, or wheel her the few feet from the bed to bathroom.  (The wheelchair is super-lightweight; the only tricky part is negotiating some tight doorways and corners without bumping her injured leg.)  And I'll be honest, until we get the pain meds/nausea stuff worked out, there might be an occasion when you have to rinse out the basin.  (To give her credit--although I'm sure this isn't something she wants to be known for--Kirstin is the neatest, most odorless vomiter I've ever met!) Between the pain and the anti-pain drugs, she's not up to much socializing.  So most of the time, you'll just be occupying yourself in another room, just available in case of need.  (There's a computer, wi-fi, a ton of books, and three cats to keep you amused, but no cable TV.)

We hope, and pray, that this is temporary.  There is still one more treatment for melanoma to be tried; a very small percentage of those who go through it are helped by it.  There is a very great chance (and I'm crying as I write this) that I'm asking you to be prepared to help with end of life care.

Many of our friends have asked if Kirstin needs money.  The answer is yes, no, maybe and probably.  Neither medical insurance nor hospice covers this kind of in-home care - at most they provide an aide a few hours a week.  If we can't find enough friends who can help and need to hire aides, or if the friends who have time are unemployed and can only come if we cover their travel and lodging expenses, then yes, she is going to need lots of money.  If you can help cover some of these expenses (and thank you, Lisa and Neil for offering air miles!), or contribute towards other medical costs not covered by insurance, please, please write to Andee.

(For that matter, if you're in the Stockton/Lodi area, do you have a guest room that you'd be willing to make available to friends who are traveling from out of state to help us?  Or if you're going to be out of town for part of the next few months, could they borrow your house, if needed?  My house is tiny - Kirstin's in the bedroom, I'm sleeping in the living room.)

Other ways you can help--

Handyman skills:  I really need to get my front sprinkler systems working again, because I don't have time while taking care of Kirstin to water by hand. (I think the valves just got clogged with dirt when the city repaired the sidewalk a few months ago.  At any rate, I hope that's all it is.)  We may also have to remove a couple of inside doors and the shower doors temporarily to make it easier for her to move from room to room, and get into the bathtub.  If/when we have to bring in a hospital bed, I'll need to put up curtains in the living room, and will need a place to store some furniture (and strong arms/backs to help move it).

Gardening:  This will make the second summer in a row that melanoma has taken precedence over gardening.  The weeds (and unwanted zillions of baby oak trees) aren't tall - but they are plentiful.  If that's your thing, have at it!

And of course prayers, love, emails, tears, hugs.  What's sustaining us through this is knowing how many of you are with us.  I love you all.

Andee

All this...

and bone mets too. Now I know why my knee hurts.

I e-mailed my primary yesterday, asking for pain relief. She wrote back asking where the knee hurt. I told her, and she ordered an X-ray. (Now, she could have done this when she first diagnosed the strained ligament—just to see what else could be causing pain—but alas.)

A and I were in the car on the way to UCSF, when her e-mail came in. She told me what it was, and to stay completely off the leg.

Thank goodness for smartphones, because I was able to discuss it with Dr. Wonderful at UCSF. Without seeing films, he recommended radiation. I’ve already irradiated the most important thing to me, so I know I can do this. It sounds positively easy.

[Overall treatment plan with them: confirming that my brain mets are gamma-knifeable (so far they say they are!), and starting me on ipi soon. I have a PET and a brain MRI (and now one of my knee) next week.]

My primary sent another e-mail, saying that the orthopedist she spoke to recommended a knee replacement. I got freaked because of the healing time, and the level of care I would need. A works full time, and needs to. The pain from knee replacements is legendary; I don’t want to be miserable for weeks or months if I’m going to die anyway. I really, really want to walk without pain again.

I e-mailed Dr. Wonderful when I got home. He added the knee MRI to the scans I’m already getting, and said he wouldn’t jump to replacement. Which made me feel a whole lot better. He is... cavalier but not careless. Willing to go out on all kinds of limbs—but not willing to inflict pointless suffering. A compassionate mad scientist. Contagiously hopeful. I trust him. And I just plain don’t want to be mobility-disabled, in excruciating pain, and miserable, unless and until I need to. It certainly wouldn’t be curative. If I were just old and worn out, that would be one thing. I don’t know if I’d live past the healing.

In other news, I took a 2 ½ hour nap when we got home—for the first time in forever. After throwing up Vicodin intermittently all day. So now I need another form of pain relief... but I feel both groggy and rested, which is oddly nice.

And I have company tomorrow. Life, as it is, goes on.

Was I this calm earlier? Hell no. I got really quiet and was crying in the car. I feel really bad for what I’ve done to my body—demanding that my leg do things it couldn’t. I’m sad that the cancer has spread. But I watch myself sprout new soft-tissue tumors all the time. And after invading my brain, it’s honestly hard to see how it can hurt me. I miss walking, and I don’t know whether I’ll get to do it again. I’m in physical pain. But psychologically and spiritually? After awhile, it’s just like, “fuck it.” I can deal with this too.

Damn.

I’m not a mutant. The doctor at UCSF called about an hour ago. Not quite sure what happens next. UCSF will take my scans to their neurologists on Thursday, and they’ll say whether or not I’m eligible for gamma-knife. If I am, we do it, and cytotoxic chemo. (I don’t expect to be eligible; I’ve been told I have too many tumors.) If I’m not, he says ipiluminab is the best bet. I can get that through Kaiser or UCSF. I'd rather have him keep treating me, so that's what I think we’ll do. (My MediCal covers it. My doctor at Kaiser looks depressed every time he sees me. This one still has enthusiasm, and knows so much more of the current research.)

If I’d had the mutation, there was a study done that said the drug they’re testing had an effect on 10 out of 10 patients with brain mets. That’s why this is so crushing. Ipi has a low response rate, but there have been documented effects against brain mets. It also can be very harmful—but some say it’s easier than interferon, which I tolerated for a year with a headache and fatigue. It’s not what I want to do, but I’ll probably have to. After that... it's kind of the end of the line.

The doctor was really concerned about response time, and what I have time to try. That tells me all I need to know.

How am I? Resigned. Sad. Not scared at all; way out beyond fear. There’s a little bit of hope seeping sideways, but it’s a rope thrown in darkness, not a solution found.

A held me for an hour while I cried. That’s how I know I still want to live.

Frustrated

No, I don’t have biopsy results yet. (That would have been the obvious conclusion.)

I go stretches between blogging all the time, now. Either there isn’t much happening, or I don’t have the energy to write. I wouldn’t be writing now, except that A just hugged me, and when I reached to hug her back (I was propped up in bed), I brushed my neck and felt two new tumors.

I’m a fucking tumor tree. I don’t go more than a couple of days without finding one. These are the first that will be visible with my clothes on. (I found one on my inner thigh, yesterday. That’ll be comfortable. [/frustrated sarcasm]) I never used to hate taking showers. Now, not only are they painful (I have to stand on an injured knee), but I have to touch my body. I have to wash these things that are doing their best to overrun me.

I haven't had a PET since February, so I don't know how the whole picture has changed.  (My oncologist at Kaiser was monitoring me with chest X-rays and visual exams of my soft-tissue tumors.)  I don’t have bone fractures. If it’s in my liver, I don’t know it—I’m not yellow. I get queasy when I’m hungry or tired, and I eat less than I used to, but I still do eat healthily. Radiation may have temporarily arrested it in my brain; that never lasts more than a few months. It’s running rampant through my soft tissue. I wonder what that means for my lungs?

I have follow-up PET and MRI scans on the 31st. I don’t know if that’s contingent on my biopsy results or not. (If I don’t have the mutation, I don’t know if they’ll scan me.) They took the tissue a week and a half ago; I was supposed to find out Friday if I have the BRAF mutation necessary to be included in this trial. I love UCSF; the doctor is both brilliant, and wonderful with patients. He spent two hours with us, asking and answering questions. But I really wish I could find out faster. (He was hopeful because of a couple of factors, my age being one of them.)

Coughing and poor sleep steal my energy, but other than that I generally don’t feel physically bad. It’s just that my hope is getting tired. (I take three separate sedatives to sleep through the night. I wake up in pain from my knee; this is even with aggressively taking Aleve. I’m going to have to talk to my doctor and my PT about pain control. I really miss walking. I want to walk without pain again, before my brain blows up.) We borrowed a walker from A’s church, because my hiking stick just wasn’t doing it. It hurts too much to bear weight on that leg.

So I’m exhausted and in pain, and watching tumors grow on me. I have less energy. But I still feel like me inside. I sort of feel faded, like I’ve been washed too many times. There are rare times when I’m rested and coughing less, and the old me comes back. Some of it’s emotional. The doctor at UCSF cautioned me not to drive. (If we get proof that the tumors are stable, or eventually shrinking, that will be lifted.) A and I make the most of our weekends. But I don’t get to go anywhere during the week anymore. If I have a medical appointment, we find someone to take me. I can’t just run to Trader Joe’s for dinner ingredients. The last class at CDSP that I still have friends in graduated Friday, and I couldn’t go be with them. I didn’t try that hard to get a ride, because I knew the day would be too long for me anyway.

I don’t really have enough to do, or enough energy to do it if I did. I’m going to need to work on that. Not sure how, but for my mental health I’ll need to.

Where is God in all this? Shadows I sense in the trees that I walk through. By that I mean with me, but not overwhelming me. Present underneath the surface, bubbling up when I need to see God. A friend prayed for a cure for me, and it was the first time anyone had done that and not freaked me out. We’ve had these conversations. I trust her, and I trust her God. I let myself drink it in. It was right. A and I went to see Talisman last night. I was in tears at the second song, and could not have said why. We had a conversation today at the car wash, where I realized that I’m more connected than I think I am—and talking about faith and grace and what God is and isn’t, is one of the ways I can feel my own rootedness. Writing also takes me there.  (Though even thinking about the in-depth processing I used to do here, fluently, all the time, exhausts me now.)

Here’s the song. The music starts at 2:06. It would have moved me under any circumstances, but I was literally streaming tears. I never used to do that. It’s not uncommon now. I’m closer to... something, than I ever used to be.



I know that God is everywhere. I’ve stopped saying Morning Prayer, except occasionally. (One reason is that I can’t even read it in a whisper anymore, without coughing all the way through. Another: the readings themselves weren’t helping or feeding me.) A friend made Greek Orthodox prayer beads for me. I went to my resources, looking for an alternative to the Jesus prayer traditionally said with those, and found something I’d forgotten about—the prayers for use by the sick, in our Enriching our Worship 2 supplement to the BCP. I can say them honestly; they express things I actually feel. So I could try that for awhile.

One practice will lead to another. I need to trust that I’ll find my way home.

Back on the seesaw

The fulcrum may be flatter, but here we still are.

I need to blog. I don’t want to. There’s just too much to process.  My speech is clear and appropriate, as is my writing when I do it.  But I worry sometimes; my brain feels like a sea sponge.  I'm always surprised when the writing process still feels like home.

I did go to St. Gregory’s for Easter Vigil, and it was wonderful. (I did myself in, though, walking-wise, by dancing too much. More on that in a minute.) St. Aidan’s on Easter morning was also wonderful. I hadn’t told anyone to expect me, because I didn’t know if I’d have the energy to go. It was so good to see people. I went to the Ranch from there, and stayed until Friday. I couldn’t really hike, because I strained a ligament in my knee sometime in March, coming out of the shower coughing and gagging. I went down as if to throw up (it’s been a long time since I’ve eaten before showering), and hit my knee too hard. Probably more than once. I only last week went to PT for it, and it’s beginning to improve. But I walk everywhere with a hiking stick, because my knee is unstable and any little wobble causes pain. Braces help, but not that much.

But the people there were wonderful, and that’s really why I went. It’s my other home. The staff has been extended family for a long time. Threshold Choir was there that week. I’ve worked their retreats before. It was both good and hard to be there with them. They sing for people while they’re dying. They sang for me, two evenings in the chapel. The first time was pure gift, and I blissed out on it. The second night, they tried to make me cry, because the director told them that I’d tried not to before. It worked. (I’m still a little ambivalent about that. Do tears help? Yes. But it’s up to me to let myself have them, when I want to and feel safe to. I told one of them the next morning, that I felt a little bit played with. She understood.)

I missed most of the Tuesday I was up there, because I had to come back to Sac for my follow-up MRI. I came home on Friday, went to church in Fremont Sunday, and to the Rosicrucian Museum in San Jose afterwards. (It was weird for both A and me to be there among all those mummies, with me rather clearly headed in their direction.)

While I was gone, A went nuts researching clinical trials. Good thing, because my doctor told me on Tuesday (a week after the MRI) that my brain mets, along with everything else) are growing.

That only ends one way. You die. And it’s easy to believe it, because my cough has been hideous. I haven’t had any energy. I literally drag myself everywhere. (I saw my last chest X-ray. My lungs are full of clouds.) A got us an appointment with a doctor at UCSF who’s running a clinical trial for a drug that actually works, consistently, on brain mets. We’re seeing him Wednesday. The catch is that I have to have the BRAF mutation. We’ve been asking Kaiser to test me for that since July. (I have a hole in me now from where they biopsied me on Friday. But we don’t have any faith that they’ll do the test.) UCSF will test me when we go there. A and I both love this doctor; A feels that he’ll be able to help even if I don’t have the mutation. I’m rationing hope.

So. I’m wearing a Lifeline button right now. (I hate the thing, but it’s for security.)  I've had a Medic Alert bracelet for weeks.  Every time I get a headache, I just assume it’s water pressure. I’m planning to drastically reduce driving after I get home from church today, in advance of anything actually happening. (A can’t take me; she’s with her mom in Davis for Mother’s Day weekend.) For the first time in decades, I feel nervous being home alone overnight. We got me a disabled parking placard; partly for my leg and partly in advance of disease progression.  I spent last Wednesday with a friend; we get together every week or two, whenever I ask, and soak up time together. This time we talked about intentional dying. And... we might have found the drug that will give me my life back. If I have the mutation. There’s about a 50/50 chance I will.

I’m hardly daring to hope. And one of the things that keeps going through my head is, “What would I do with my life if I had it?” I want to live. I confirmed that when I walked out of my biopsy at Kaiser, checked my e-mail on my phone, found the exchange that A forwarded to me between her and the doctor at UCSF, and was suddenly and uncontrollably crying. I want this. There is so much I can do, if I get it. And I’m also scared. I would need so much support, just to get on any kind of economic feet. (One of my fears is that a loss of or lapse in health insurance would mean certain death. A won’t let that happen, as long as she can prevent it.) I was sure before the cancer came back, that I wanted to be a priest on the streets. Now, that’s one of a garden of possibilities. Whom do I love most, and how do I want to be with/serve them? I’m toying with the idea of hospital chaplaincy—I certainly know it from a patient’s perspective—but I haven’t even done CPE. (I was sick all the summers I might have.)

What would I do if I had a life, and time? What would I do if I had energy, and could freely breathe? What would I do if my brain were fully mine? What would I do if I could manage my melanoma like any other chronic disease, taking a drug for as long as it worked (in this case, about seven months) and then jumping to the next invention? What would I do if death weren’t lurking behind the next tree?

That I might get to find out, both exhilarates and frightens me. Even as death itself holds much less fear. You learn to adapt quickly to medical realities. “Your mets are growing.” “Oh. Well, crap.”  When I stopped crying and wanting to cry, I was no longer so scared to let go of being here. It was almost weird, how quickly God was not so much the stranger.

I can’t commit to living with my full heart, and I can’t turn my full being to dying with intention. I have one foot in each possibility. The choice won’t be mine; it will be dictated by biopsy results. I can do either. The waiting is what’s hard.

I need to stop and thank people for writing me, when I so rarely write back. (John Kater, I’m looking at you.) Thank you for being in this with me. Thank you for encouraging me, praying for me, loving me through everything. Thank you for telling your stories. Thank you just for being here.

I mean to write more often than I do. It’s a lack of energy that keeps me from it, and also sometimes the speed at which circumstances change. Sometimes I wish I didn’t have this commitment. But all of you sustain me.

If I disappear, don’t worry. A will write for me, if and when I can’t do it anymore.

Love to all.