This is Steve speaking for Barbara who died on September 19 after a 12 year struggle with cancer. Thank all of you who faithfully followed her BLOG and supported her through her struggle these past years. She appreciated all of you so much. Blessings to you all.

Move along little doggie, move along

This evening was the 4th in a row that I was able to walk with Steve and the dogs one-half mile. I used my 4-wheeled walker.  We window shopped all around the Plaza, sat down and nattered a bit, then drove back home. I understand that it's a paltry distance - especially since I had slept so much during the day - but it's a massive effort for me. It helps to take 2mL of morphine before we leave and the same  when we return to make it possible because I hurt everywhere.

What scares me most is getting an infection, falling again or not being able to continue working at Juvenile Hall.  Steve is going to work with me when we start up again, hopefully later in August. It's been quite a long leave of absence.

Living upward

I didn't expect to do it, but I actually walked my second half-mile with Steve tonight - and Brix and Demi.  I can push my walker with both hands now so I feel more stable in spite of the horrendous pathologic fracture of my left humerus. I don't get tired at that distance, but if I did I could turn the walker around (we call it Mom's stroller) because there's comfortable seating on the opposite side.

I'm either getting stronger (from the 14th blood transfusion, or the chemotherapy or simply from walking more.  It's only my arm that hurts - badly - but morphine helps.  Also, I had radiation to that area right after the fracture, so it's fairly dead to pain.

Number One son landed his first real legal job.  He passed and was admitted to the bar a month ago and now he's clerk to the Chief Justice of the Hawaii Supreme Court.  I guess if you want a legal career there's no harm in beginning at the top. We're all feeling very proud. It's just about the only suit and tie job on Oahu, everyone else wears aloha shirts.  Me, I wear crops.

Small is good

I walked with Steve and two dogs this evening - around The Plaza (1/2 mile) - and found it easy. Demi was clearly on duty -turning back toward me every few paces to be sure I was safe and forever in her gaze.  I don't think I'll ever get past the fear of falling after that humongous humerus fracture on April 12. It will never heal, but some of the nerve damage in my fingers has receded.

Pain control has been excellent, finally, and I'm grateful. It was non-stop since October 2011 until now.
I can finally take two showers a day - independently - one of life's secret joys.

Steve prefers that I not attend church because I have virtually no immune system in the event that I bump into a germ I haven't met before. That doesn't bother me, I've always appreciated a rather small life.

So tomorrow I have the day off, so to speak.

Hanging on to hope

It's not finished. But don't you remember the potholders you wove when you were about six years old? Now, over 60 years later, weaving with one broken humerus is much more difficult - and more painful. I can pull two loops through and then the pain is so high I have to stop for the day. It used to take me 20 minutes to complete the entire project, but this one is taking weeks.

I had a fever all day today - not high, but concerning given last week's sepsis.  Face it, I'm an invalid! I saw the oncologist this morning who let me proceed with chemotherapy (Halaven). I begged since the last response was so favorable and gave me real hope.

You better believe it

My ankles rolled back this morning. Because I was attached to the telemeter four days and also receiving various IV fluids, I wasn't allowed to walk much and my legs filled with almost 30 extra pounds of fluids. It's unpleasant to stump around on thick log legs.

The first five pounds disappeared during the night and I expect the rest to flow off within a week - especially if I keep walking. It was a big deal to identify shapes and feel bone!

These constant hospital admissions are wearing me down - especially  the ones that involve 'round the clock heart monitoring, roommates, an alarmed bed, etc. This last four-day stint was more grueling than the 34 days I stayed there in December and January.

Today I pretended I was normal and acted accordingly. I wore jeans (that no longer fit) ate real food, read a New York Times best seller and mostly stayed out of bed.

My best moment was seeing Steve arrive to drive me home.

Home again, home again

A text from Steve: "Brix is here on the bed and I told him that mom would be home tomorrow and as soon as he heard 'mom' his head came up immediately and he looked at me expectantly."

So I did come home today and am blessedly glad to be in my own home.  Brix has welcomed me with doggy hugs and kisses and seems content to have me back.  His tail (crash, crash) thumps whenever I say his name (thump, thump).  We're all together again.

My lab numbers continue to improve - higher or lower, whatever they are supposed to do.  Everyone assumes I am dying - I do too, but am trying to refuse.  It's August now and I've had what, 3, 4? hospitalizations so for in 2013. It's been a frustrating and painful year so far.  I'm gonna do my best to get some fun and good times out of the last half.

The manager of the hospital just happened to be strolling around and stopped in my room.  "Has everything been OK?  Is staff answering the call light in a timely way?"  "It's not been a problem," I said, "if I have to wait too long I just put my feet on the floor, the alarm goes off and they come running."  He burst out laughing.  Most problems can be solved.

Oh, I am so happy to be home.

On the mend, hopefully

So I'm sitting here, both sleepy and bored, while I receive more blood. I think this is the 13th unit I've received since December. Staff took me off isolation status when a final test cleared me and moved in a very deaf elder.  Staff has to yell to be heard.  But the good news is that I will probably go home tomorrow. I am more than ready.

The morning was horrific. I was told to start walking, and when I did, everything fell out, that's all I can say. I was mortified beyond the beyond. Later I found out that I hadn't received Ativan and started going off the rails from the sudden withdrawal. I also was on a much higher dose of morphine and started having auditory hallucinations. I swore I heard Steve talking to a nurse about Demi, when they were still miles away. I started calming as soon as Demi arrived - I think of her as my PTSD dog - and the medication arrived too.  Steve helped me take a shower.

It will be quieter at home - if I can just get there. One of the IV lines will be removed later tonight. When I start walking I will lose several pounds of water weight and begin feeling closer to normal.  This visit has been on a different unit and more difficult for me to manage. I don't identify with inactive elders and would prefer to have much more privacy. I like to chat with the younger nurses and aides.

Hopefully, I really will be in my own bed tomorrow night - if Brix will share. He perks up when I talk to him on the phone - and I'm hoping his depression will lift if we have some time together. His eyes are woefully sad each time I have to leave him. He is much more sensitive than either Demi or Parisse and has obviously developed a close bond with me, especially.

Now what?

So, I was home from the hospital for a few days and back again - good thing too because this time I was septic and staff couldn't move fast enough to run several antibiotics simultaneously.  I feel better now but no one's talking about shipping me home.

Steve says Brix is totally bereft and sleeps with his head on my pillow. The testing is getting more difficult. This afternoon I had two hours testing for oxygen, another CT scan, etc.   What's next?

Here I are

I've been away from most of my online friends since July 18. Eventually I needed hospital care and there was no argument there. On Day 2 (last Tuesday)

I was so mentally confused that I believed I was at a summer camp. When I asked for more pain medicine I was refused. I was angry with my nurse who couldn't get me to understand her perspective. Then I was angry with the staff for alarming the bed so I couldn't get up - exactly what I planned to do because I had a small bottle of morphine stuffed away.

Then I was angry that I hadn't dosed myself on the way to the Emergency Department, hadn't brought others meds that I take routinely, then I started to wonder who, exactly, was in charge of my care (irresponsibility I had been able to overlook).

Now I was just stuck. Who, if anyone, was overlooking my medical care? who was paying for my care? with a cell-phone packed away in the purse I couldn't touch, how could I reach Steve?

I went from anxiety to anger, then panic to rage.

I will probably go home tomorrow - if the fever stays down and the white cells continues to recede. Lucidity is normal, speech and brain functions have also improved to what seems normal to me. Steve and I notice regained skills each day.

So I should be back on my merry way tomorrow................... and writing to you almost daily.

Steve was so funny this morning. "I've learned so much about the female anatomy this week - what
"wings" and "no wings" means -- and who wants this information? How does one apply it to a leaking partner?

See you tomorrow, I say precariously..............................

Strong fingers

Do you remember when you were fix or six years old and learning how to weave loops into pot-holders? It was my first and greatest of the kids' crafts.

Now it's all come back to haunt me.  The fingers on my left had are in genuine pain, a leftover from the shoulder mash. I've been offered some finger exercises to practice and, I'm finding that weaving for my kitchen works well too!  I feel like a little kid sitting in front of the TV surrounded by loops, in and out, in and out.

I'll show you my work when I finish something.

Mid-summer in northern Calif

I was trying to show off my new "stroller," which I really enjoy, but the angle is, well, not so great. Instead, you can see my broken arm sling, a distracted Brix and how size 10 is better than last fall's size 18. (I guess even cancer offers some gifts!)

We were stopping for a brief break on my first walk around the block in quite a while. What I like about this walker is that, if I get tired, I can sit down (comfortably) and rest a bit. (Cosco's $100). I can also stow a lot of baggage under the seat and in the back back-pack.

At any rate, I'm feeling much better, am thrilled that my numbers dropped (133 to 99) and I'm on my way to normal - below 39.

Next time I'll open my eyes.

Note: agapanthus is everywhere!

Good, good, good

Tuesday's news from the oncologist was great - my chemotherapy dropped 41 points - that means the new treatment is working. Unfortunately I can never remember its name! But any high number that goes down is good news. There are side effects - memory loss for one.

Among the living

This was an easy day -- one blood draw followed by a visit to the oncologist. My fingers still feel mashed, but it's getting better.

Last night, in a poignant moment, Oldest Daughter asked me, Mom, is there anyone who counts you in the land of the living?  I couldn't think of anyone, I keep getting hints that I'm on my way out.

Mom, do you count yourself as being in the land of the living? Yes.  Mom, I count you among the living.  You should be living and acting with the living, others can be with the dying.

So, that gave my a new burst of energy and I was up most of the day.

Dog days

This photo - from FaceBook - reminds me of Brix, but even he isn't quite this lazy. Forgive me, but I couldn't resist peeking from yesterday's offerings.

I've been feeling much better lately, only my left-hand fingers feel scrunched and painful.

Oldest daughter brought over her two boys the last two weekends so there's been a greater sense of extended family. The youngest is begging me to reopen Nana's Art Camp. I reminded him that I can't drive or even run, but if he doesn't mind hanging out under the air conditioning, I can suggest all sorts of crafty projects to keep us both busy until the fall semester cranks up again.

Weedology

Yesterday a friend stopped over to gift us with this dragonfly that responds to the light of the sun during the night. Lovely, yes?

It was back in the high 90s again this afternoon, the dragon-flies soaking up the sun. Later it cycled all over again for our evening's entertainment.

We drove over to Rohnert Park to visit my new favorite enhanced chocolatier. I learned that I can grow up to 30 plants if I paste a laminated copy  of the recommendation signed by my doctor. I can do that, it grows like a weed.

The sweetest old lady dog...

There's nothing sweeter than an old-lady fresh from her bath.  Demi is almost nine years now and enjoys her bath, almost weekly.

Temps were in the 90ºs this afternoon; more expected tomorrow.

The week has been up and down, topsy-turvy. We continue with our scheduled medical appointments - one today, two yesterday. I'm looking forward to the weekend - nothing is scheduled. YES!

I'm nobody, who are you?

So I saw the orthopedist this morning.  He recommended another month of slings to keep things steady. I don't know what I'd do without my Kindle to read my way through boredom.

I've also set up five knitting/cross-stitch projects, but I really need my left arm more than I thought I would. I'm hoping each day I'll get stronger.

Two girls from Old Miss stopped by this afternoon.  One is a neighbor down the street and the other, from Virginia, will be her new roommate next September.

Tired of it all

I am so very, very tired of this broken arm, slings and casts, etc. I really need the use of my left arm so I can knit and cross-stitch, etc., but it isn't happening.  I take so much morphine and medical marijuana (legal in California) to keep pain under control. Tomorrow I see the bone guys.

The wind has been blowing - hard - for about five days. I can hear creaks in the roof, a bit eerie, to be sure.

Oldest Daughter brought over her boys on Sunday so we finally celebrated Christmas and exchanged gifts. Maybe that means I can draw and paint again - something I haven't done since last October.  That used to be the main purpose of blogging.

Aside from all that, I actually feel well, just a tad frustrated.

Reason for hope?

I may have confused some of you with my last post. Rascal was born a few houses away and came over to visit. Her current family is a volunteer breeder for Canine Companions for Independence. After eight weeks the newly whelped move on to a volunteer puppy raiser for about 16 months, after which they stay on campus to work 6-9 months with the professional trainers.

Today was a quiet day, mostly spent reading.  Tomorrow I see onc, always a bit nerve-wracking because he has access to numbers that don't post on my online chart.  They never post the CA-15, the marker I care about most.  Currently it is rising, but I have only had two of the new treatments. I am unaware of side-effects, I'm happy for that.

Room for one more?

Meet Rascal. She will soon begin training to become a fully certified service dog.  Right now she is only four weeks old and still spends most of her time in the whelping pool snuggling up to her mother and five siblings.

When she turns eight weeks old she will move to a household with time and interest to care for her for at least 16 months.  Google Canine Companions for Independence for more information. I raised five (not all at once), it really is doable.

More malaise

I'm a bit queasy tonight, but it's not bad and I can still function. I will be so glad to have my left arm back. It throbs & aches and generally gives me grief.

Steve, Demi and I were in church yesterday morning. I miss the community but do my best do be there often.

Today was blood testing and tomorrow is chemo...

Eat & sleep

I'm around, but mostly sleeping. This week I'm even eating.-BB

Hot potato,cold potato

Finally a day with nothing scheduled!

We shopped in Santa Rosa, read & napped.  I found a new collective to join so now I'm back in medical chocolate and more comfortable.

When the cast was removed I suddenly yelled out from all the pain radiating down my left pinkie finger. It hasn't quit. Instead of the damaged nerves story I was getting, I'm now wondering if it's actually broken.

I seem to have received considerable benefit from yesterday's two units of blood. I think the chemo is working too because I suddenly feel much better.

The hope is that I've reversed direction and have turned a better corner...

9:15 a.m. - 6:45 pm

Poor Demi sat through six of my medical appointments last week; today there were two.

I was supposed to have blood drawn yesterday, but I was wretching so violently that I couldn't be a passenger in a car.

So the nurses drew the blood today. The numbers were so wonky that chemotherapy was cancelled and I received two more units of blood instead.

Steve pushed me into the suite at 9:15 when I was in tears and shaking so violently from cold that a registration clerk wrapped me in toasty warm blankets so I could thaw out a bit, but by evening I had had so much blood, medication and socialization that I was laughing and feeling much more myself.

I have one appointment tomorrow. We're giving Demi the day off.

One bad day

A southern Illinois friend of Steve's e-mailed this photo of a box turtle (I think). I grew up in southern Illinois too and recall myself sitting on my backyard swing and suddenly noticing a turtle crossing in front of me.

That's the one good thing from today. Otherwise it was a day of misery. Pain was under control, but there was major v & d (you're smart, figure it out), general weakness so I couldn't take care of myself and major fear of falling and/or wasting away. It's hard to eat even 1,000 calories on days when I'd rather not eat at all - and that's when I start to panic.

The worst was when I accidently got a gallon of water (maybe more) down my cast (at least the shower felt great before that happened). I turned the hair dryer on it which helped some, but mostly it's just cold and clammy. I'll stop by orthopedics tomorrow when I'll already be in the building and see what they want to do about it. I think the game plan was to remove the cast on Wednesday so it might not be the disaster it feels like tonight.

Oh, dear.

The sorrow of it all

It reached 95º degrees today, must be summertime.  Thank goodness for A-C, I never noticed the heat.

Steve, Demi and I attended our friend's funeral this morning. This was a lovely woman who, coincidently, lived in Chicago when I did, but it wasn't until both families moved to California that we actually met. We would never have met had Brix not introduced us.

It's approaching midnight so I'll knock it off for now. Hope the rest of your weekend goes well.

Life can be so frigg'n sad...

We made this a quiet day at home on purpose. It was beastly hot outdoors but the A-C was on so I never noticed.

Steve brought me the local newspaper this afternoon where I, sadly, learned that a friend had just died of MS. I was so sorry to receive that information.

For five years she and her husband hosted a doggie play group for seven local dogs who originated from Canine Companions for Independence - including our three labs. It was a generous act because it involved keeping two acres neatly mowed, apples picked up, etc. for our Wednesday appearances. The group ended when her service dog died suddenly and unexpectedly of a massive heart attack.We were all totally bereaved.

Death seems to be just about everywhere these days, doesn't it?

Please save me

Steve always brings treats to the chemotherapy staff, patients, their visitors and friends on days when I have chemo. I began a new treatment this week and he offered these Greek pastries, one of their favorites.

Because this one was a push-in treatment I was done in five minutes and the pastries were already gone!

No side effects so far.





'

Four out of five - done!

Tomorrow is my final radiation treatment to my left arm - to kill off the tumor(s) and help with pain relief. Apparently I am officially an invalid - I own four wooden canes, a walker for one-armed users, an awesome walker and a borrowed wheelchair. I could open a store.

I won't feel functional, however, until the cast is removed, it's truly debilitating, truly.