Starting off steroids

It’s been almost a week since the cyber knife radiation, and I’ve started my steroid taper.  It’ll take about a month for me to get completely off.  Yesterday I took two pills instead of three, and the good news is that my arm is still functioning normally. 

My knees on the other hand…  I woke up yesterday morning and this morning because of the pain in my knees. Now, most of my leg pain has been centered around my right hip and IT band – the long muscle from the hip to knee. So knee pain is a bit different. Joint pain is sometimes associated with a steroid withdrawal, but this did start out before I dropped the dosage.   Anyhow, for now I’m going to keep an eye on all of this and continue the taper. 

I got good words of advice from Dr. Fratkin up at Resolution Care today, and that’s helping me push through any discomfort.  I want to tell people again and again how much good they’ve done for me and for others. And I’d love to encourage anyone who reads this to go look at their website, learn a little more about palliative care, and how they’re changing the field, and maybe, if you’ve been looking for places for your money to go, consider a donation or investment in the company. I feel like they have the potential to not only affect people in Northern California, but all over the country.

My cyber knife radiation treatment starts at 3 pm tomorrow. I plan to have a very chill morning – Reil and I can Netflix and chill (in the old sense of the phrase), do some laundry, and then over to the Peninsula for a light dumpling lunch. I’ll take extra steroids along. I’ll take a hit off my joint and I’ll take an ativan, just to make sure. 

I really don’t have too many worries. It’s supposed to be mild and go smoothly. Maybe a headache. Maybe a bit of extra swelling so my arm’s affected for a day or so. Maybe fatigue. All easily handled. 

But there’s always that little nagging part. Because it’s the brain. So we spent time as a family together today. Molly and I got our nails done. And I went off and recorded a “just in case” video on my phone. And wrote an extra letter to one kid, which was promptly lost by human error. I’ll start again tomorrow and it will be clearer for having written it twice. 

I’ve also popped an ambien for the first time in a while, in hopes that I can sleep past 4:30am. My nights have been sleepless (maybe 5 hours if I’m lucky), but at least they aren’t angst filled.  Just a long, quiet, dark morning with the cats. Let’s hope tonight provides a solid 7. 

And for now, I’ll probably wait till say Hello from the other side. 


Today my friend, Jonathan, came over to do some cranial sacral work on me. We’ve worked together a few times before, and while I don’t always understand it, sometimes what he says and does makes sense in my body and mind. 

I usually attempt to follow Jonathan. Sometimes it feels like my head is a boat, rocking in the water that gets calmed down a bit. 

Today I felt that I lost him from the get go. While he was working  my energy, I kept sinking deeper and deeper into these pools of nothingness in me. And at the end, I came up completely empty and still. 

I feel like I have space to cope again. I can be filled again.  The grief isn’t taking up every single cell of me.  


Got the pathology back on the knob that was growing on the outside of my head. It is the kidney cancer.

It sounds like it is possible that they will treat the inside lesion and the outside wound with radiation on Monday.
I’m not really sure if or how this news will affect my outcome.   Ultimately, I think not much. 
I forgot to take a dose of steroids yesterday and today my arm feels weak again.  I’ve also had a headache today, which isn’t so fun, even when you’re not cancer sick. 

Most of all, right now, I just wish I weren’t sick. I could deal with the whole dying process so much easier if I had more energy. 

I’m expecting an iPhone tripod from Amazon today.  I plan to use that in conjunction with RecordMeNow, an app that gives prompts of questions that kids may have for their parents.  I also ordered two spools of thread because hope springs  eternal. 

Is it time for Hospice?

I spoke with my oncologist today. Beyond all that is going on with bone mets and brain mets, we haven’t had a treatment that’s provided any efficacy for about 5-6 months. 

Right now we are looking at two main treatment possibilities:  opdivo (which I’ve just been on) + another drug,  or avastin. The former has more possible side effects, and since I didn’t gain any benefit from option alone, probably won’t do much. Avastin seems to show moderate possibilities, fewer side effects. I’ll probably go with that. 

But the reality is that I’ve probably got less than a year left, if I’m lucky. Either of the treatments might give me maybe a couple of months of no progression. If I’m lucky. 

I had thought I was ready for hospice, but the idea of just waiting to die is a little daunting.  I really don’t like this whole dying thing. I would so much rather just live for however many months I have.  Deal with the dying, get on with the living. 

Have any ideas about how to help me live?  Let me know. I kind of feel like another party is necessary, but not sure about planning it. Want to bring your family over, along with some dinner?  We’d love that. Drive to the beach?  Yeah. Why not?

I’m just going to call on you to help me live, whether in treatment or in hospice. I hope you’ll answer the call. 


I’m lying on my bed, barely able to move. I’m wiped. I have a number of substances in me, and as a result, I’m actually quite relaxed. It feels good to lay here quietly, and comfortably for a while.

I hope I can mimic this mood tomorrow when I go in for my MRI. (I’ll take a travel pack of substances). We will meet with the neural surgeon afterwards and hopefully will have a plan after that. 
On the surface, I have felt mostly at ease about all this. This cutting into my head. I worry a little about how it will turn out. I’d like to function well after it is done. I’d like to function better than I have been. 

If I can’t function, I think I’d just like to be cut loose. Let me fly through the universe. 

What next?

The past week has probably been the hardest most stressful week that I’ve had since I was diagnosed almost 2 years ago. I’m using the voice typing to write this post because my wrist is weird still and typing just makes it weirder.

On Monday I went to the doctor a GP. he looked at my arm and pretty much immediately called the neurologist on call. that doctor was down in the office within 10 minutes. he determined that he wanted me to have an MRI which I agreed to as I have had MRIs before with no problem. Unfortunately when I got into the room all the stress that I’ve been dealing with just blew up and I couldn’t get the MRI done. the next morning after an hour long massage, a couple of ativan, and feeling totally relaxed,  I got back to the radiology waiting room and before I could even go in just broke down again, and wasn’t able to do the MRI.  They finally agreed to let me do a CT scan on Wednesday and thar evening I got the call from the neurologist that I have a lesion in my brain. The cancer is about 1.6 centimeters. It is in the front of my brain and it is pushing against parts of my brain which caused my arm to stop working. Wednesday night I started taking steroids, and that has helped my arm start working again. Unfortunately, my wrist still gets very tired, still feels weird, and it gives me the heebie jeebies. So I’m having to struggle through pain, discomfort, agitation, and anxiety. It has been a very rough week.

I have a referral to a neurosurgeon and I expect that sometime in the next few weeks I will be having A operation to remove the cancerous lesion in my head in my brain. I can’t imagine why I’m so anxious. for now struggling to keep the anxiety to a level I can control but it’s very very difficult. I’m managing with multiple sessions of guided meditation each day. Reil rubs my back or my feet, often sometimes in conjunction with the guided meditation. I have had two massages last week, and one more tomorrow. and still I find myself walking through the house each day just crying. it’s hard for me to do anything. the things I love to do tend to use my hands – sewing writing coloring playing on the all just wears me out.  I’m bored. I have nothing to do nothing that won’t just push me further into agitation and anxiety.

I keep trying to feel hopeful, but that’s an emotion that’s been difficult to find lately.