I’ll have what he’s having

I’m back at the hospital today, in the infusion center getting topped up with IV fluids. 

This week my lab results showed that I was quite dehydrated. I was having stomach cramps when I ate or drank anything, and feeling very weak. On Wednesday, after feeling like I was going to pass out, Reil basically carried me up to the oncology department  and plopped me in a chair of the infusion center. I was out of it. The nurse got an IV in me, and within about 30 minutes I had perked up enough to feel present. 

Since then, I’ve been drinking gatorade  and pedaling, and similar drinks to keep me hydrated. Today’s visit should bring me just that much more relief. 

I’ve also spent the past few days not taking my cancer medication.  I’ll start up again tonight, but oh what a relief it has been. My stomach feels better. I’m not having diarrhea.  I still feel weak and tired, but I was able to get 6 loads of laundry done today. So that’s something. 

Needless to say, I’m not really a fan of Inlyta. The side effects have been really shitty and not fun at all. If it weren’t working, it’d almost be a relief. 

But it is working so far. So, ugh. 

Today, within a span of about 5 minutes, two friends in the DC area sent me links to the Washington Post about a new treatment for kidney cancer that’s had pretty good results (The article is here). I’d heard about nivolumab before – one of the guys in a kidney cancer forum I’m on has been taking this treatment and it is working very well for him.   Still, it looks like the response rate is only about 20%, so I’d be hesitant to stop something that is working for something that might not. However, when this drug stops working, it’s nice to know there are other options waiting in the wings. Preferably ones with fewer side effects. 

Now I’m going to take the last few minutes of this I drip to nap a little

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A week of ugh 

It’s been a rough week. I wish I could write a post that was not about feeling crappy and having side effects. But that’s pretty much how it was. I mean, I even bugged out of my painting class early on Wednesday because I couldn’t concentrate and felt like crap. 

It’s been a week of low energy and hair loss. I’m pretty sure the hair loss is a side effect of the thyroid medicine I started recently, and hopefully that will calm down eventually. Not sure about the low energy, but it’s left me spending the days just staring at screens. I haven’t been able to nap, but haven’t been able to do much else, either. Mostly just ugh. 

After Tuesday’s pizza fiasco, I’ve been very careful about what I eat. A steady diet of oatmeal, some fruits, activia, and khichdi (an Indian rice and lentil dish), have made me feel better fairly quickly. From here on out, I’m venturing more cautiously into the world of other foods. 

OK, the highs.  Monday, Jonathan came over to do some body work with me. It was even better than the last time, and I hope he’ll keep coming. On Thursday, Jeffie came to give me a massage, which was also amazing, and really contributed to my feeling like a pile of goo. In both cases, my cat, Jane, jumped onto the table, checked out who and what was going on, then curled up next to me. Jeffie called her my protector. I’m being protected right now, as she’s curled in bed with me. 

I also received a quick visit from Emily, which was lovely. I’d love to encourage any of my friends who have a little time during the day to come by. Even a 10 minute visit can be helpful to me. Spur of the moment is fine or text to see if I’m up for a visit. I probably will be. 

What ails me today

My hair has been shedding lately. I’m losing a good handful every day. I think it is a residual effect of the stress I had in February, after the bad scan. 

I hope that’s all it is. My hair is finally behaving the way I’d like it to, for the first time in my life. I’d hate to lose it now. 

Another Inlyta user mentioned that she’s getting blisters under the skin on her feet, and now I’m thinking that I should have the corn on my foot looked at again. Cause it’s just weird. 

Also weird is the growth on my head. It’s a cyst and I’ve had it removed once before, but it is marble sized again, and becoming an annoyance, and the procedure should be simple and fast. So I should get that taken care of. 

I’m happy to report that after a week of mostly oatmeal, pro-biotic yogurts, bananas, lentils and rice, and applesauce, my gut is feeling a bit better. Actually the whole tract. My mouth feels less irritated, because the foods I’m eating are so bland. I have spots on my tongue that are odd, but aren’t causing more than mild irritation.  

And now I’m thinking, why the hell am I listing all of this when I had an amazing picnic on Saturday?  Roughly 100 people, friends and family. I joked to a few people that I now know what it takes to get a Bowes family reunion to happen. Cancer.  But I’m pleased to have reconnected with cousins, aunts and uncles. And it was a thrill to be surrounded by love and support. I hope this will become an annual event that I’ll be able to host for years to come. 

Poop talk

Another late night post because my bowels won’t let me get to sleep.

I’ve been dealing with so much diarrhea lately, that I semi joked that I was spending 2-3 hours a day on the toilet. Unfortunately, that’s probably a fairly accurate estimate.

I’ve spent the past three days on a modified BRAT diet – bananas, rice, applesauce, toast, oatmeal, and Activia. Boring. And yet everything else seems sure to light my ass on fire.

I’m hoping Dr Fratkin, the palliative care doc, will have some helpful suggestions.   I’d like to be able to eat a regular diet again, or at least add in a little variety.

Of course, between the lack of intake, and the inability of my body to process what I do take in, I’ve been steadily losing weight. About 10 pounds so far.

And, dammit.  I’m hungry.

It’s been another pretty rough day. I’ve felt exhausted all day, which led to poor decisions on my part – mainly about whether I was up for going to see Avengers (I wasn’t, it turns out), and ensuing arguments as I tried to cope with my poor decision making. Hopefully we will go see the movie on Friday. 

I managed to get myself up in time for watercolor class this morning, and while I left a little early, feeling more tired than when I arrived, I was able to finish a piece that made me happy.  The foliage needs more dark values, but I’m really digging the bridge. 



Now I’m in bed, with a cat at my feet, and I’m trying to will myself to pick up the book I’m working on. I just enjoyed another book by this author, John Lescroart, but this one is more of a chore. I’m tempted to let it go in favor of an SJ Bolton. However, that book is not on my bedside table, and I’m sure the cat would prefer I didn’t disturb her.  Maybe “Dead Irish” will become more compelling tonight, but not too much. I do need the sleep.  

Sixty to zero

I started this morning with an easy school drop off followed by breakfast with friends. Headed home, and spent an hour or so doing guided meditation and the new stretching exercises that the physical therapist assigned me, while listening to some healing music that was assigned by the woman who leads me, long distance, in meditation. At noon, I was showered, refreshed, relaxed and ready for a quick trip to the pharmacy and then a support group.

Sounds like I’m taking great care of myself, right?

By 1:00, I was a total mess.

I order almost all of my meds through the Kaiser website, and have them shipped to my home. Very efficient and easy. However, both the Votrient. and now the Inlyta. had to be picked up at the pharmacy. After waiting in line for almost half an hour. with my body becoming more and more sore and weak, I was told that my prescriptions weren’t ready (Though the website said they’d be ready yesterday), that two probably weren’t even there yet, but if they were, the woman who dealt with incoming orders was on break, and wouldn’t be back for an hour.

I wasnt able to handle it well. I’d just used up my very last “spoon” of energy standing in line, and with it went all ability to cope. Lots of tears were shed. An f-bomb was dropped.  Only one.

Eventually, I was able to get two of the three scripts I’d come for, and got the promise that they’d call me when the 3rd one was ready.  A volunteer wheelchaired me out to my car, where I rested for a while before heading home to sleep for a while.

It was a humiliating experience. I couldn’t stop crying. I could barely move. I was in pain, uncomfortable, exhausted. And I couldn’t do anything about it. Ultimately, I felt my confidence in my abilities even more shaken.

I usually try to end all my posts on an upbeat note, but I’m having difficulty getting to that space. I really just want to curl up, away from the world, for a while.

However, one possibly hopeful note is this – one of the meds is for hypothyroidism, which my doc said I’m experiencing. Once the med starts working, I might have a bit more energy than I’ve had, and that would be greatly appreciated.

Take me out to the ball game!

I don’t think you could call me a baseball fan by most measures. Aside from a few World Series games, I don’t usually watch baseball on TV.  I definitely don’t listen on the radio. I can only name a handful of historical and current players. But I do love going to ball games.

We started going as a family when we lived in Maryland. The Nationals were doing terribly, and tickets for seats in the new stadium were inexpensive and easy to come by.  Even in the hot and humid DC summers, we could go and have a terrific time for not much more than the cost of a movie. Plus the food at the park? Way better than movie concessions.

We always sat in the nose bleed seats above first base, where we had a bird’s eye view of the game, letting me actually follow what was happening, even if I couldn’t see close up or catch a prize from the t-shirt gun. Lots of great memories.

So, when I got a call from the Cancer Support Community, asking if I’d like to be part of the SF Giants’ Strike Out Cancer event, I immediately said Yes!

Jodie, Christy, me, and Pam, before the shoot

On Tuesday, nine of us met at AT&T Park for a day of filming, including five of us from the Kids Circle, a support group for kids and families with a parent with cancer.  We were all given wrist bands, then were led by our guide through a maze of hallways, up back elevators, and to a luxury suite, where we were invited to relax, have a delicious box lunch, and enjoy the view.

The view inside the suite

We all relaxed, took lots of photos, and one by one were escorted to the Tony Bennett suite – far more swanky than  the one we were in – for filming.

The view from the suite

 

Each interview took about 10 minutes. They asked about our cancer, about our families, and how cancer had affected our lives.  Luckily, as I (and I think the others, too) felt less than coherent, they plan to use only about 30 seconds of each of our interviews for the final production.

As a bonus, each of us got to grab a picture wearing our guide’s World Series ring. Bling-tastic, right?

IMG_5250

 

Strike Out Cancer will take place on Mother’s Day, May 10, at the game against the Marlins. If you’re there, look for me on the big screen, and later down on the field!