Seizures and Showtunes 

Thursday evening, right before our potluck was supposed to begin, I went into my bathroom to get ready. 

The first indication that something was wrong was when I couldn’t move my right leg. The second was when my right arm, which hadn’t been working well, raised up over my head, and wouldn’t stop flapping. I fell onto the toilet, and tried to call for help, which I think sounded more like bleating. Reil came in and said “You’re having a seizure!”

So, yes. My first, and hopefully last, seizure.  Once I knew what it was, it became much less scary. Not so much for Reil, because he could see me frothing at the mouth. But I was alert the whole time, could watch my husband’s face, and just relax into it.  I couldn’t talk.  I couldn’t move, but ass deep in the toilet seemed as good a place to go with it. 

The paramedics got there in no time, and since they weren’t sure whether it was stroke or seizure, rushed me in the ambulance to the hospital, following stroke procedures.  CT scan, some observation, an increase in steroids, new anti-seizure mess, and I was home in just a few hours. 

One of the hospice nurses came over that night, and ended up being extremely comforting and helpful. 

The week since then has been a mixed bag. Lots of sleep.  Meeting my regular hospice nurse from Kaiser. Fatigue. Waiting for my arms to work again (Monday evening, mostly).

Most of my frustration has come from not having energy.  The days before the seizure I was sleeping 16-18 hours a day. Since then it’s slowly gotten better, but there’s never enough energy. 

My hope is that I can go a few weeks without any crises, and to be able to count on having enough energy most days to be creative in the morning, take a nap after lunch, and be awake when my family gets home in the afternoon.

Today gives me some hope for that. Molly and I were able to go see Wicked in San Francisco tonight. It felt like a little slice of extra special normal.  It gave me hope for much more from life than just laying around in bed all day. 

My first quilting goal this year was to make quilts for my husband and my kids.  Not the wall hangings that I usually make, but something larger that they can wrap themselves up in my love. 

My second goal was to do the same for my siblings.  I’ve almost accomplished those goals. Most are coming home from the quilter tonight. 

And now, once again, I’ve got that lazy/dumb/crippled arm.  It’s really affecting all my limbs, but mostly my right arm.  I feel worried that it’s not just exhaustion, that it’s progression of the brain mets. That I’m never going to get use back.  Because that means no more quilting, no more being creative in that way that means so much to me. 

I wasn’t planning on that. I hope it doesn’t come to that. 

In the meantime, I’m sleeping a lot. I can’t do much else. Everything just drags. It’s to the point that I don’t move from room to room if I don’t absolutely have to. 

I started on Kaiser hospice today, and I got a hospital bed. It’s not very comfortable when flat, but with head and knees up, it is nice. I’ve ordered a pad to go on top of the mattress. 

I feel like I’ve been a bear lately. I’m grumpy. I can’t remember words and that’s frustrating. I just want to be not so exhausted. 

Ups and downs

I remember when I was in my 30’s, with two young kids, reminiscing about how easy it was to stay up all night in college. Last Thursday I couldn’t fall asleep at all. I did get some rest, but no sleep. 

Three days later, even with sleep in the meantime, I’m dragging more than Friday, and wishing I had the bounce back of a healthy 30 something, let alone a college student.

What worries me that my limbs are all exhausted, like before the steroids kicked in, but not quite as severe.  I do think it is mostly exhaustion, as I did a lot yesterday, too. 

Mostly this reminds me to live to the moment.  Not to worry, but to just take care of myself right now. Nap, rest, eat good food.  Take my meds and vitamins. Use the oxygen. 

I also got the news that I’ve been accepted into the willed body program at UCSF, so that’s one more thing taken care of. 

I’ve still got an SSI disability snafu to work out. Later. 

Right now I’m going to make a list of letters to write.  As long as I can stay awake. 

What a difference a week makes. Thursday morning I could barely control my legs, and didn’t have the strength to walk more than a step or two, if that. My right arm was pretty much useless, and my left arm tired.

Now, after a week back on the full steroid regimen, I can walk straight, though painfully, I have full strength in the left arm, and nearly the same in the right. Hallelujah!

I’m continuing the quest to make life easier for myself. And, seriously, my favorite new thing is the bedside commode. If I weren’t already married to the love of my life…  

I ordered some wheelchair accessories – cup holder, gloves, two little side packs where I can keep wallet, phone, glucose stuff. It’s easier than a purse.  I’ve also been reading about wheelchair hints, which came in handy yesterday and today. 

Yesterday, I got to practice in Target. Getting around was good exercise, and the nice wide aisles were easy. Today, Reil dropped me off downtown, where I met a friend for shopping.  When we got to the dressing rooms, of course someone able bodied was in the wheelchair accessible room!  Grr.  

Later, when I went to the restroom, some old guy started pushing the chair for me. While I had my hands on the wheels!  Not good manners!

Overall, though, it was amazingly refreshing to be out of the house, getting around on my own, and feeling like a real person.  If this is life on hospice, bring it on!

Into hospice, out of crisis

I’m happy to report that I’m feeling much, much better. The steroids are kicking in, and I can walk much better, and my right arm has more strength. 

We’ve been working on making the house work better for me, to. We rearranged the living room so that I can wheel right up to one of the chairs, and get in with just a step or two. 

I have a shower seat which makes bathing comfortable. I have a commode next to the bed. I suspect I’ll get a hospital bed in the next few weeks. 

I finally realized that the reason I’d been having crazy sweats was because the steroids were making me even more insulin resistant.  Measured my blood glucose and it’s been in the high 300s. I now have insulin, and while I still get high spikes, I’m not getting the sweats, and am much more comfortable. And isn’t that the point of hospice?  Also, I keep joking that the worries with high blood sugar levels are the long term effects. And, yeah.  Anyhow, sweets are probably not the best things to bring over, as much as it pains me to say that.  I love macadamia nuts, though. 

The whole family is having a hard time, understandably.  But we are also making some emotional breakthroughs.  Stress, fighting, love, talking. We’ve got a lot to do, and not nearly enough time to do it. So much to fit in.  I had a long emotional talk with Molly today, and a shorter, but perhaps more profound, time with Jacob. It breaks my heart to do this to them.

A lot of people have asked to visit this weekend,  and I’m sorry to have turned you all down. The coming weekends will be slightly less crazy, I hope. And if you don’t mind visiting in groups, or having collective visiting times, I think we can make it work.

The hospice nurse said they don’t want me staying alone.  I’m not sure I’m going to be cooperative on that measure in the near future, though I do have people lined up for another week and a half.   But I think there may be days ahead in the future where Reil may need to work, and none of my family can be here.  No commitments now, but please think about whether you might be able to spare a day in the future to babysit me. I’d rather spend the day with a friend than an in home care giver I don’t know. 

Other help we may need is dealing with getting a wheelchair up to and down from the house.  Right now I can walk it, but I don’t know what the future holds.  I hope to meet with people who have ideas, but I’m afraid that the costs of ramps etc might be more than is reasonable for a short term use. 

We are getting sign ups for Tuesday meals, and that is so helpful. Remember that we are holding potlucks on Thursday nights, 6-8, too. If you want to bring extra, feel free!

One more way to help, once it dries up a bit, would be to help pull weeds in the front yard.   All of this rain…good for California, craziness for my yard. 

Love you all.  Lisa

Hospice 

Tuesday night I got almost 10 hours of sleep. Despite that, I napped from 1-2:30 and 3-5 on Wednesday. When I went to bed last night I felt out of sorts, and exhausted. 

During the night I went to the bathroom four times. I didn’t make it any of the four times. But more concerning was the fact that each trip got increasingly difficult, at a rate that was extremely scary. I had no coordination in my limbs and my right arm was once again feeling dead.

My oncologist and I talked on the phone this morning, and his first recommendation was to take 2 steroids. And then 2 later. Tomorrow I’ll go back to the 3 per day I was on. 

He feels that this indicates that the cancer has continued to move into the brain and or spinal column.  His feeling is that any more treatment wouldn’t do much good. 

I was disappointed, but I can’t say I’m surprised. And since the idea of having help in the home managing everything that’s going on seems so much easier, I’ve decided to go into hospice.

We are hoping that the hospice the will come by this afternoon. I have a lot to ask. 

Food Stuffs

Thanks to all who have said they want to help with meals.  If you’d like to sign up for a meal delivery, you can do it on my Helping Hands website, which includes our address:  https://kidneycancer.lotsahelpinghands.com/c/715606/

Here is a list of recipes and restaurants that our family enjoys.

RECIPES/Dishes

Below are some of our favorite things.  We are open to lots of other foods, too!

Foods we don’t like:  ONIONS, green peppers, fennel, shrimp (Molly and Reil)

Middle Eastern

Italian

Soups

Other Ideas

  • Beef or Mushroom Stroganoff
  • Green Bean Casserole
  • Home made mac and cheese
  • Pot Roast
  • Enchiladas
  • Burrito makings
  • Chili

 

LOCAL RESTAURANTS

Chinese – Joyful House 510-582-1585 Delivers!

Our typical order is :

  • Wor Won Ton Soup or Yee Fu Wonton Soup
  • Pot Stickers
  • Rice

3 of the following dishes (but if you want to surprise us with something else, we’re adventurous – except that Reil and Molly don’t eat shrimp)

  • Mu Shu Pork
  • General Tso’s Chicken
  • Eggplant with Tofu
  • Ma Po Tofu with Ground Pork
  • Stir Fried Green Beans with Pork
  • Hong Kong Style Combination Chow Mein

 

Sandwiches – Mr. Pickles – 510-398-8532

  • Reil:  The Mr. Pickle, with lettuce, tomato, mayonaise on Dutch Crunch
  • Jacob:  Hang Loose, with mustard, lettuce, pickles on Dutch Crunch
  • Molly:  Turkey and Swiss with mayonaise and lettuce on Dutch Crunch
  • Lisa:  Chicken salad, lettuce, tomato, mayo, mustard on Dutch Crunch

 

Thai – Top Thai 510-538-4400

  • Spring rolls
  • Pad Thai
  • Rice

plus 2-3 other dishes

  • Panang curry – chicken or pork
  • Pad Prik Khing – pork
  • Pumpkin Curry – chicken or vegetarian
  • Eggplant – tofu
  • Pad See Ew – chicken, pork, or vegetarian

 

Vietnamese – Le Paradis  510-886-2130

  • 3 orders of Pho Ga (Chicken soup) (#14)
  • 1 combination White Rice Noodle Soup (#20)

or

  • 2 orders of Pho Ga
  • 2 BBQ pork banh mi
  • 2 BBQ chicken banh mi

 

Indian – Aroma 510-888-9555 Delivers!

  • Samosas
  • Naan – 2 orders
  • Rice
  • Chicken Tikka Masala or Chicken Makhani

2-3 other dishes

  • Lamb or goat biryani
  • Keema Matter
  • Dal Makhani
  • Chana Masala
  • Dum Aloo
  • Muttar Paneer

 

We also love Middle Eastern food, but it is harder to find close enough for delivery.  Gyros, Chicken or Lamb Shwarma (no onions), Falafel, Hummus, Baba Ganoush, a couple of dolmas for Reil…

There’s also Munchery.Com

Hope, a little more

Another day of writing while lying down and exhausted. But this time with a better mindset. 

My family spent the morning in our first family therapy session., which was provided through the Cancer Support Community in Walnut Creek. I can’t say enough good things about this organization. We go to the monthly Kids Circle, which are for families where a parent has cancer. That’s been an extremely important resource for us all.  I’ve done individual therapy through them, and now we get family therapy, too. It’s all free for us.

The session went well, though it was different, and easier, than I thought it would be – I was all geared up for the heavy discussions the adults have in Kids Circle.  The counselor got us to talk about our family dynamics, and gave us an exercise to do, which lightly pushed some buttons, but only lightly. As expected, one kid had very little to say, while the other was cautiously talkative. I had to just remember to sit back and shut up. 

I’m hoping that we all gain more skills to help deal with my sickness and death.  I also want to help Reil and the kids better figure out what the family dynamics are going to look like when I’m gone. 

This afternoon, Molly and I joined her friends to paint pottery.  I loved painting and hanging out and listening to and watching the girls. But two hours of painting completely wore me out. Now that we are all back home, I’ve popped some pain killers and am stuck on my bed. I wish I could be more involved, bustling around the kitchen, getting snacks and drinks, but today, the painting with the girls is what I could manage. 

It was kind of heartwrenching for me in counseling when Molly’s response to how things have changed was that lately I’m in bed a lot more often.  

I’m starting to think about what changes we will need to make around the house at some point. Obviously a potty stand at some point. Ugh. My room is cozy, but sometimes it feels cut off from the rest of my house.  Maybe we’ll eventually get a TV and bring comfy chairs in here to be together. I probably need more or better pillows for reclining in bed. Whatever. We will make it work. 

I will make a big list of food (in fact, that’s what the exercise was today), but it’ll require me to be at my computer, which is way more than I can manage right now.

Hope, lack of

Today was a pretty rough day, emotionally and physically. 

This morning I couldn’t get out of bed quickly enough, partly due to stiffness and pain, and didn’t quite make it to the toilet on time. As I finished up, cleaned up, and changed my pajamas, I felt a bit humiliated. But more than that, I started to feel despair. Is this the best I’m going to be the rest of my life?  Pissing  myself in the middle of the night?  Barely able to walk, and never without pain?

I have a physical therapy appointment next week, and I’ve been pinning a lot of hope to the idea that PT will help me walk without pain again. Or at least a manageable amount. This morning I couldn’t shake the feeling it won’t provide any help. 

I’ve been trying to remind myself that I’m tapering off steroids, and my adrenal gland isn’t yet working fully again, and that pain is to be expected. I’ve been diagnosed with pneumonia, so my cancer speckled lungs really aren’t working well now. I’ve been trying to be in the headspace of knowing that the next 3-4 weeks are going to be difficult, but maybe April will be easier. I’m just going to take it easy.

When Jeffie, my amazing massage therapist, came over, it was a relief. 10:30 am felt so much later in the day. I was already exhausted. I popped a couple of percoset and let her work her magic on my body and soul. And she is a magician.  Almost two hours later, with the drugs also kicking in, I at least had some pain relief.  And Inta came to visit, bringing quilting goodies and lots of cheer.  Very nice.

Still, movement during the day is hard. And painful.  And slow. I’m contemplating whether to bring my walker up to the house. Will sitting on it and pushing my way around the house with my feet be more or less of an inconvenience?   I don’t know. Is it better to get some movement than none?  Is the distance between my bed and the sofa really so great?  (Sometimes it feels like a mile.) Just now, I laid on the sofa and cried from exhaustion and pain. It’s not just the kitty on my lap that makes me not want to go to bed, though I’m exhausted at 9pm (hours before my old bedtime.)

I’m trying to get back into a more hopeful frame of mind. I have 3 more weeks of steroids, and then I can start another cancer treatment.  With any luck, it’ll work for a bit, maybe beat the cancer back for a few months of respite before it stops working and the cancer finally takes over. 

I’m very grateful to everyone who has been reaching out. I can’t say enough how much human contact lifts me up. A good conversation helps me ignore the pain or discomfort. A foot rub or hand massage or hug helps my body. And  running little errands around the house spares my strength.  So, if you’re free, especially during the weekday, please feel free to call or come by. I will always be honest about what I can or cannot manage. I’ve also found that small groups are really good, because if I’m fading a little, the convo can go on. 

Also, would love to put out a plea for meals.  We’ve all been sick here, and worn out,and making meals has been more of a chore. We will take them anytime, but I was hoping to set up a regular Tuesday thing that people can sign up for. I’ll write a post tomorrow with the link for sign ups, and will add links to favorite recipes, too.  Many thanks in advance.
Also, 14 years ago today I was wrestling with a 5 1/2 pound baby in my belly who just did not want to stay head down. She’s still headstrong today!

My Film

Recently I had a film maker come to my house and film me talking about my quilts, my cancer, dying, and palliative care.  I’m very happy to share the results, especially because it highlights what Resolution Care has been doing for me.