...she's using the...

...Big Girl Toilet...Hoo-frcken-ray!

Czn't walk there slone, but with help I'm getting there....

How's _your_ rehab going, Mark? DonnaMarie?? I can do 15 reps w/1lb.weigtht on lrft leg (the side that's gone). Feels soooooooooo slow....... Typing not much improved...How ssre you doing, Sqrq??


Whst kind of book does anyone think I cxn mske on five loops of ds Lane before Spring???

...Friday is...

..."Doctor Day"...

Which means after the radio Therapy treatment


Which means after the radio Therapy treatment, we hang out to have vitals taken [ blood pressure is up, weight is down] and we meet with our 'attending' Resident who was not there today as were many as this was one wicked Iowa Winter Day, so we got to meet with the Radiation specialist with whom we started this summer, Dr. B.

Looks like the original mass of aberrant cells has continued to shrink (lose their foothold?) He, too sees the kidney thangs as being cysts and nothing to be too concerned about..we're still trying to learn about them...

Very expensive meds to dissolve the blood clot in the left lung...lovenox...which he also seemed minimally concerned about. Then again, it ain't _his_ lung...there're four treatments left for a four-day week.

dd has been doing healing touch with some massage daily. We're so lucky to have her. It's a very different level of healing...

... all of this is getting to be enough o mke one want to pull one's hair out, How ironic. ..got to go sweep it up...but it's taken no pulling...*sighs*

Make a great weekend!

...it's before 1:00 p.m....

...and we're done with all of our medical appointments -- some of which were not even scheduled.

What _was_ scheduled was a blood draw (hemo screening) which look like they should according to Kevin. Then a chest CT. Then a meeting with Dr. C who said upon cursory glance looked _very_ good.

The other appointments started then. I haven't eaten since Monday night, because I started vomiting Tuesday morning and haven't stopped since. It's also why I didn't start this post with, "I hope you all had a good yesterday, even if you also don't celebrate the Christian Holiday," when I decided that _anything_ would be better than puking all day, including getting gifts one doesn't want.

The next stop was the chemo suite for an IV of saline solution and an anti-emetic. I felt immediately better!

Then back to Dr. C where we learned the radiologists found two other things: a spot on my kidney and a blood clot in my left lung. Kidney
thing is likely a cyst. We're scheduled for a follow-up appointment next week, and somewhere along the line there will be an ultrasound of the kidney.I'm doing well with the home therapy and nurse. (The hospital wqnted me to go to Cedar Rapids to 'special' rehab...long drive for Kevin, but after two weeks of caring for me he might see that as the better alternative...?...

The cataract surgery will have to be postponed a month or two.

In the meantime, my eyes hurt from strain. This was typed with a 24 font....

So many hellos and thankyous will need to wait until later this week. So apologies 5oewy. Seeeeeeeee!

Make a great rest of the day!

Groggy Daze

Apologies for not having blogged of late. -- it tires me to walk three feet, both of the cateract surguries have been cancelled. Since the brain surgery and radiotherapy started the eyestrain is awful and getting worse. doc, you might want to hire carl's wife, patty, to edit your book if time is an issue. everyone here seems to think my recovery is taking longer than expected, especially Kevin and his workplace *winces*

thank you kevin, sam, nancy, dd and everyone else who has helped keep the blog current.

Kevin reads me the new comments daily. Thank you all for taking time to comment.
i do have a douple of requests: if you have sent flowers, please let us know so we can add them to our thank you note list.

it seems one company was happy to leave them anywhere four days later. if the woman who found them on her door and then called us we would never known they had been sent. so we do know who sent them, thanks ann arbor and terrace place, ny!

Radiation Treatment Number Thirty-nine

...because thirty-nine down and nine to go sounds better than six down and nine to go. Afternoon treatments are not great -- dp just wants to get it over, so the wait is hard for her. We've been testing the waters of 'how early is too early' - we were there more than a hour early yesterday, and they still got us in within 10 minutes or so.

dp is spending more time in the chairs every day -- we worked on bills together this evening and we'll do some more tomorrow morning. She's got a low-grade headache and ear-ache that tylenol and ibuprofen handle fairly well, and she's tired, especially after the treatments. Still, progress is slow but steady.

She did try a little typing yesterday, and her left hand is going to have to learn to do that again. Her 'a's keeping coming out 'q's, so you're stuck with my blogs for a while longer.

The photo is the best I could do at capturing the 'crystal forest' that was our woods. Yesterday, it finally warmed up a little, and by afternoon the woods were raining crushed ice. I'm slowly catching up on everything (look, here's a blog post!), and looking forward to the four day weekend. How about y'all?

The New Grind

We went to radiotherapy in our new scheduled time -- 4:15. Day 2 (or day 35, if you count the other radiotherapy) was pretty uneventful. dp doesn't feel stable enough to walk, so we're using the valet parking feature now, and I've got Marie's old wheelchair in the back of the Baja. So far so good -- dp says the treatments are longer -- a 40-count rather than an 18. She said she could smell something different when they were radiating the lung, but now there's a solid visual cue -- she sees a blue light. So far the biggest side effect is being tired after.

Every day she's a bit stronger, though, in spite of the new therapy. She's sleeping better and longer, and her head is healing nicely. The PT should be here again tomorrow. Having Nancy around is definitely handy...

Me, I've got a reasonably clean driveway, ice storm be damned. The ice is slowly melting off the trees, and the landscape is surreal -- greyscale when it's cloudy and sparkling in the sun.

More Radiation

A bunch of folks came over Saturday to help out with holiday lights. Much fun was had, and good food was consumed and I'll have a lot more lights once I get a few more extension cords.

Sunday we just hung out and hid out, and this morning, we headed back to the U to meet with Dr. S, our new radiation oncologist. You may recall that we met with him back before surgery -- he said that radiotherapy was the standard post-surgical treatment for this kind of tumor, and left us to ponder the choice of focused-beam or whole brain radiation. Well, after looking at the CT and MRI, there wasn't much choice. The tumor was very close to the brainstem and the cavity left is fairly irregular, so he's thinking that focused-beam isn't really an option. We signed off on 15 treatments of whole-brain radiotherapy. The did the aiming scan this morning and they'll start the first treatment on Wednesday. Happy birthday, dp...

The good part about this treatment is that is has the greatest chance of preventing additional tumors. The bad part is that is has the most side effects. In the short run, dp will lose all her hair. There could be nausea, headaches, and the ever-popular fatigue. In the long run, she could lose part of her hearing, and some of her short-term memory.

Here's today's show and tell. The image on the left is the tumor before surgery, and the left shows the cavity where the tumor was removed. The tumor is the blob just right of the center of the brain. The brainstem is the darker spot just above it.

Nancy got in on time around noon -- JR picked her up at the airport and she took care of dp while I went to work and got some shopping done. When I got home, I took on the ice on the driveway again. It's heavy work, but I'm definitely winning.

Short Hairs

A tip: don't go into brain surgery with a french braid. The surgeon was pretty conservative with the shaving, but on top of the chemo, dp's hair was pretty tattered. We asked Bree to come over, and I donated my hair to Locks Of Love (the next time you snicker at somebody's bad hairpiece, remember that it might be me.) Bree cleaned up the back of dp's head, and she'll see what she can style once dp can wash her hair after the stitches come out.

Life here is progressing. The physical therapist was here today, and she's given us simple exercise to do while she clears two weeks' of visits for therapy. dp's still pretty weak, but she's eating well and only seeing one of everything. There's an appointment with the radio oncology dept on Monday, and that will include a follow-up MRI. There's another appointment on Tuesday -- I suppose I should find out where, but we've taken to dealing one appointment at a time.

Tomorrow there are some folks coming by to help with holiday lights, and I've got a new snowplow guy.

I just have to remember to wear a hat...

Home again

We got home around 12:30 Tuesday. Monday night, we set up the extra hospital bed in the King Room. Ron, Rob and I tucked it up against the closet, and there's still just enough room to get a walker in there, as long as you roll the tv back in its closet. When dp got home, she had time for lunch before she fell asleep. She woke up for supper, and to watch the end of Tin Man, and then slept most of the night. Double vision is better, dizziness is too, but she's still pretty weak.

Met with the VNA nurse today. I spent most of the time that I wasn't with dp dealing with the driveway. We're both pooped, but it's good to be home, and one of us will probably feel like writing something more before too long.

Happy Birthday...

...were the first words out of dp's mouth when she called me. That was followed closely by "they want to send me home today."

This is what happens when doctors don't speak to nurses. The nurse who worked with dp all weekend said that she'd rather wait until dp has bowel movement, since the last one triggered a vasovagal syncope. She went and talked to one of the doctors, who said that they were working on the assumption that she would be going to rehab (St. Lukes in Cedar Rapids is the closest neurology rehab), and we don't think that rehab is actually necessary. I talked to a social worker briefly, and they are supposed to send someone over to talk about home PT options.

Right now, the plan is to bring dp home tomorrow, and set her up upstairs for a couple of days, and then get her back in her own bed later in the week. She'll need a walker and a shower chair, but we've got plenty of each. They want 24/7 coverage at first, so I can probably do most of my work at home. I use some volunteers to give me some coverage for the periods that I do have to go to work for -- Cinda's been a trooper -- covering for several hours at a time, but let's not burn her out.

Meanwhile, I'll be here waiting for staff to come talk to us...

Sunday at da U

Progress is slow but steady. dp is "off-monitor," so now she only has to work around the one IV in her left hand. The infusion pump came back almost immediately after I'd noted its absence. She's getting saline that way, but all of her other meds are taken orally.

She walked (with a walker) to the bathroom today. She still lists pretty heavily to the left, still has some dizziness and double-vision, but she's eating (and holding down) solid food. They're talking about sending her home "in a couple days," but nothing definitive yet.

Trooley and I did our usual thing yesterday -- here in the morning, home for the early afternoon, and then here again until 8 or so. The ice storm made life a little more interesting, but nothing a well-driven Subaru couldn't handle.

She's still not sleeping real well at night, but she's dozing now, so I'm going to go try my hand at bookkeeping, and I'll come back tonight to watch Tin Man.

A hole in my life...

...has become the whole of my life.

It colors how I see the world,
and how the world sees me.
It affects me physically,
not to mention mentally.
It gives rise to the need for caregivers.

It alters perception of time.
It modifies schedules.
It upsets plans.

It drains energy.
It saps strength.
It exhausts.

It plays on emotions.
It angers.
It confuses.

It disrupts thoughts.
It disturbs dreams.
It interrupts sleep.

It narrows focus.
It plays tricks.
It blurs vision.

It destroys self-esteem.
It breaks trust.
It dashes hope.

It revises notions of fair.
It reorders priorities.
It reshapes expectations, spoken and unspoken.

It impacts friends and family.
It imposes itself in all aspects of our lives.
It continues to tranform everything.

-dp
I wrote this before surgery...
And I still feel torn, shredded, ripped asunder.