Hospice

Good morning, all. I'm afraid the latest take on my medical state isn't good. Our dear and trusted oncologist, Dr. Partridge, says it is time to sign up for hospice care. She has been edging toward that for some time, and I could tell from how I feel that things have moved toward that point.

The good part is that hospice care here is good and offers pretty complete services. They will be very helpful as we navigate this part of the journey.

If you want to get in touch, email is probably best.

Love to all.

Linda

No birthday wishes

Busy day here. Since last week was so hard as far as my weakness, we set up a bunch of evaluations with home health care. I saw a nurse, a physical therapist and an occupational therapist. We started getting a bunch of stuff in order -- we have on order a walker, compression socks, several such things to make it easier for me to get around. I'll see therapists several times a week, and will work to rebuild my strength. We're hoping this is a turning point that will get me on my feet again.

It will take a while, I know. I'd prefer just to curl up in a ball and sleep. But I'll give it my best shot. As Howard wrote in one of his essays in Liminal Space (can't remember which), the "battle" metaphor isn't my favorite one for fighting this disease... brave, etc... but there's still some punch in me.

Till then, I'm not up for visitors, I'm afraid. And, please, no public birthday mentions. Thanks for the notes and wishes, though. 

Listening to Jungle Book

I don't know what to say other than things are not going too well here. A home health care person will come to take blood samples tomorrow. Then I'll have time to relax; at least, I hope so.

Please keep fingers crossed, good karma aimed our way.

New post, old fogey?

Once upon a time...

I could type 90 wpm. Now most teenagers don't know what wpm stands for. It doesn't mean much for job searches anyway. I certainly have trouble finding the home keys. Which are different than house keys, which I can't find either.

So how can I be expected to operate the library's online loan system? I don't mean to put myself in the Luddite category, because I can be good at this stuff, but it should be easier. Do I need a separate iTunes account to check out  an audio book from the library?

Ah, well, at least there's plenty of good music on the iPod.

Update? Still very weak. Trying to figure out how to make logistics work, with some progress along those lines. Lots of sleeping.

Good night.

Boomerang ... or banana?

These days can really whip around on me. I seem to have lost what little strength was left in my arms and legs overnight. Howard did a yeoman's job in moving me around this afternoon and evening, literally.

We're looking forward to hearing what the home health care advisers have to say. I asked Howard to postpone their visit -- a mistake there.

Clark homecoming this weekend. Maybe that will be a nice change of pace.

(For those who still can't manage to add comments, sorry. I can't find any easy way either. You click on where it shows the number of comments, Then type your comment in the box. Beyond that, Email me with ideas. Thx.)

Praise for poison

I had chemo today, and honestly was glad to have poison coursing through my veins. Good old platelets made the cutoff point. These treatments take forever (five hours or so today) but the next one is scheduled for two weeks out, so I'll have some time to rest. Next week I'll get another PET scan and we'll re-evaluate. Again.

Also meanwhile, the home nursing care people will come take a look at the house and make suggestions about where/how to make improvements so getting around is easier and safer for me. (Deepest thanks to those who have such changes more feasible. You know who you are.)

Sunday I felt pretty good; today was hard with lots of pain and weakness in one hip. I don't know what makes the difference. If you get emails or see posts that seem radically different in tone or coherence from one another or my usual, let's go on and attribute that to the same unknown factor. Artistic license?

Tomorrow may well bring silence. Or chattiness. Remember to comment or email back!

Freudian typo?

About half the time, when I type the word "cancer" it comes out "cancern." I'm both amused and touched by that -- cancer and concern combined.

Suggestions welcome

Things on to-do list for today: 3. Things accomplished so far: 0. Where to start? Sitting up?

Clever title to be inserted here when one occurs to me

All in all, today's oncology visit was fairly good. The results on the fluid tapped off my stomach last week were "inconclusive" so couldn't rule out the presence of cancer cells. Other blood counts were pretty good though, considering that I had chemo on Wednesday. The physical exam also didn't turn up any new concerns.

So unless there's some change over the weekend, I'll go Wednesday for another chemo treatment.If I do get uncomfortable, I'll get fluid tapped off again at the hospital.

Longish aside: It's strange how warped body image is in our culture. I've noticed people's shapes so much more often in the last few months than I have since I was a teenager. I see signs that someone may be losing weight because they are struggling with health problems that I would have missed before. I wonder if another person may be reacting to steroids. Things my eyes would probably have glided past not too long ago, or maybe even have blamed the person for (from bad eating habits, etc.).

Anyway, I admit that I liked it a lot better when what looked like an early "baby bump" was one. But it's good to be gaining more awareness and tolerance of all our shapes.

Me, me, me, me...

The test results from Friday weren't available to the oncologist today, so we don't know what the extra fluid in my abdomen means yet. But the other indicators (yes, those crazy platelets) were in good enough shape that I received another round of of the new chemo. 

I feel fine, mostly knocked out by the drugs that protect me from other side effects (anti-nausea and anti-allergy, etc.). I expect to feel okay tomorrow, too. If not so drugged I miss out on it.

Abbie and Howard are at a mandatory meeting at her high school right now about college applications. Lord, will I be happy to have that process behind us -- and I'm not even the one who'll have to do them.

I'm glad people like the idea of having these posts to check when they want to find out how I'm doing. But please don't forget that I want to hear your news, too. Even when it's not great news or earth-shattering. Emails are fine for that.

It seems like lots of my friends have occasions in September or October that I'm failing to acknowledge -- so to them, happy anniversary or birthday or new year as appropriate.

Excuses, excuses

No medical appointments scheduled for today. There may, however, be some unauthorized napping, given the excuse of gray weather to just snuggle in bed.

Afternoon report: Can nothing be counted on to provide a halfway believable excuse for napping these days? The sun came out this afternoon. Beautiful light, temp. I had to just make the best of it and stay awake!

Give and take

This is already getting weird for me. Who wants to hear the techy medical events of my day? Certainly not me. I'll try to keep it to a minimum.

But here goes. I had platelets administered and fluid drawn from the abdominal cavity for testing. Even though it took five hours or so in total, due to the usual small complications like computer glitches and orders between the doctor's office and outpatient care not lining up quite the same, it was no big deal physically.

The hardest part is spending hours hanging around the hospital. I was in bed the whole time; Howard was in various waiting room chairs. Why is it so tiring to sit or lie down all day?

We'll see the oncologist early next week. I don't know for sure when we'll have results or exactly what we're looking for.

The pain meds may still knock me out part of the time over the weekend, but there's no reason I shouldn't feel pretty well overall.

And th-th-that's all folks. Whether or not you're old enough to remember Porky Pig.

Another scan

I didn't end up having chemo today. My platelets are steady, but still low (amazing, isn't it?, humans' ability to interpret signs as positive -- which steady is in this case, even if not high as we'd like). 

 

Rather, I will have an ultrasound of my abdomen on Friday to figure out what's causing some bloating in that area. Nothing worth emergency attention at this point, but it could be related to protein intake or liver function. They might drain off extra fluid and give me more platelets on Friday. Or there might not be enough to be worth draining off. Then we'll see about chemo again next week.

 

Still feeling better than I did on Monday, so I am reading and listening to audio stories and napping. I wish I could dole out the chance for all of you to do that same as desired.

Funny image

Today's counts: I'm holding my own with the platelets. I felt really lousy this morning -- with a lot of weakness and pain -- but didn't need an infusion, so that was welcome. Next step will be possible treatment on Wednesday.

I told my parents on the phone last night that I felt like one of those jugglers who run around keeping plates spinning. Except to be successful, I have to lie down a lot.

I promised you in Cincinnati rain for today because of Abbie's camping overnight. And? Never fails. I feel very lucky to be home, dry and warm.

Twice!

I made it downstairs and sat up for a while twice today. Improvement, right?

(Please don't expect me to post an update every day, guys. But I will try to get in any significant changes.)

Abbie and her fellow seniors go camping tomorrow night (just one night), which means it will rain. In case you needed a truly reliable forecast for something.

This stinks

Not a great day. I spent most of it in bed, listening to public radio ask for money. Here's hoping for more energy tomorrow. And less Garrison Keillor.

Easier?

Friends,

So many of you have asked about my health status. Yet it feels strange to do updates on Facebook.  So I'm going to try to occasionally post what's going on with me here, and you can check when you feel like it. I hope that doesn't feel impersonal. I'm so low in energy right now that this is the best I can offer.

Background: As you may know, in August scans showed the cancer was on the move again, and I needed to switch treatments. I had 10 radiation treatments then changed to another chemotherapy. The new chemo knocked me off my game, both with low platelet counts and extreme fatigue. I got platelets twice and since then I've spent a lot of time sleeping.

Counts have been somewhat better since then, so I'm taking it day by day with lots of support from Howard and Abbie. This is harder on them than it is on me, I'm afraid. Lots of friends have also picked up support, with everything from grocery shopping to yard work to moral and financial support. I'm so, so grateful.

So that's where things are for now. Here's today's report:

Sept. 16: Today's blood count was high enough that I didn't need platelet infusion. I will get checked again on Monday, then perhaps get chemo again on Wednesday. (We're looking at once a week now rather than once every three weeks so keep the effect on the blood from being as hard hitting.)

Let me know if this format is helpful. And if you have more questions please feel free to text, call or email. Thank you for all the love you're shown us.