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.

Medical update

I started a new chemotherapy regimen this morning but now I can't remember the name! Supposedly there are few side effects. Hair loss is a 50% possibility. I sure hope my hair stays where it belongs or it will be the 3rd time it's fallen out.

Then I went to radiation #3 of 5. Almost done!

Swimming thru eggs

What could possibly be better than a 3-day holiday in my very own home?  I slept late, I sorted yarns and flosses and made plans for various crafts projects.

The weather simply couldn't be any more lovely - although light rain is due very soon. We've been walking up and down the street passing out dozens of beautiful brown eggs straight from the hen herself. Four productive girls produce almost four eggs every day.  Want some?

Little by little

Oh dear. Saw the oncologist this morning. He had two CA15-3 tests to read. Normal is 39 and below. For ten years I sat in the 40s. Last month I hit the 70s but then came down. But yesterday I was in the 130s, the highest ever. Don't know why. I'm beginning a new chemotherapy regimen in about two weeks. But the truth is, I seem to be wasting (cachexia) and that's very bad news.

We bought my much coveted walker from Costco today. It's the kind that turns itself into a seat if
I get tired. There are storage units under the seat as well.

My regular medical marijuana collective closed and is no more. There are others around, but I have to find them. The pain relief is superior to morphine....

I had six medical appointments this week so I am more than ready for a three-day weekend...

Higher than usual

I wish I had an infant puppy to hold in odd hours. Sweet, yes?

Today was the first day of radiation. Zap! There is always the question of what kind of cells got hit, healthy or not?  I might need the very one they shot.

The day was solid with errands.  I now have all the embroidery threads, pillow cases printed and not, needles, knitting needles and yarn, crochet book and hook and whatever I'm forgetting that allows for hand stitchery.

A slow move forward

I wish there were more quiet days like today. The only calendared time was the twice-a-month meeting of the cancer support group. There were 14 of us, including a guest speaker on pain control and relaxation techniques.

Tomorrow I begin the radiation to my broken humerus, a ten-minute procedure that will help control pain. After five days I hope to feel better and have less tumor activity to the site. I think the cast will be removed in two weeks, something to look forward to.

Good news

It's been windy all week, but tonight is almost fierce. A bit scary...

Oldest son seems to enjoy giraffes as much as I do. Here he is at the Honolulu zoo, a favorite spot of mine too. We learned that he just passed the bar in Hawaii so the pressure is off and he can enjoy some of life's simpler pleasures.

So much better

Usually casted people wrap the affected limb(s) in large white garbage bags. But a couple of days ago I asked the CVS pharmacist if they have something more substantial - and they do! It is so snug at the elasticized top that I need help from Steve to pull it past my elbow, but once on, I can shower like forever!

Today is the third pain-free day so I've clearly turned a corner, finally.

Tomorrow I have two medical appointments plus some fun shopping to do.

Tuesday in May, remember that!

Weekending

We woke up to a bright sunny day without a single medical appointment on the calendar.  I went out for a shampoo and trim and feel so much better.

Whole Foods has an orange juice machine like the Zumo machines in Spain. Two cups didn't even begin to squelch my thirst, but it was delicious. We ran errands all over town and are taking advantage of nap time now. Oh, and the new recliner was delivered - luxury!

Struggling

I am home now. Right arm for IVs, left arm for a very heavy cast. I got 3 more units of blood to add to the 5 since Christmas.  It's getting harder to match my blood because of all the donors swimming through my veins, but I am truly grateful that folks are making it possible to stay alive a bit longer.

Yesterday's MRI proved that I have a brain and there isn't a single spot on it. Yay!

Late last night I was chatting with a nurse and ended up sobbing through my life story.  In one of his books, Patrick Carnes, who runs an addiction clinic in Southern California, comments that there is more cancer among survivors of sexual abuse. That makes sense to me because it would mean there's a lifetime of stress hormones.  I would add to the statistics thanks to an incestuous uncle and the clergy I went to for help. I'm surprised that my life has been as joyful as it has. My parents loathed me.

Steve said that when he returned home last night Brix was totally bereft because I wasn't with him. He slept on my side of the bed instead of curling up against me the way he usually does. This is Demi - she wears a service cape. Parisse can never go anywhere because she seems autistic to me - no eye contact, afraid of everything, can't play, isolates several rooms away. Five veterinarians have tried to help her, but we never got very far. We love her.

Steve gave me a sponge bath this morning before we left the hospital - new levels of intimacy when you're lugging around a cast with strict orders not to get it wet. I love him so much! I came home to a clean house and everyone was cared for - three dogs, four chickens, Youngest Daughter. He got all the refills for my meds - 10 prescriptions these days. We're all exhausted and fell asleep at 7:00 for two-hour naps.

Oldest daughter is helping me use my juicer so I can follow a food-as-medicine regimen.

I have to stay alive.

We cope

Yesterday was such a good day, but this morning I was so disoriented I had to go to the ED again to be evaluated.  Steve and Demi stayed with me most of the day. Youngest Daughter is trying to take it all in.  This morning she pointed to the sky and asked Steve if I was going there soon.  Her belly hurts and she's on total overwhelm.

You know how much I love giraffes

Perfect viewing when you're lying around with a broken humerus.

http://www.youtube.com/watch_popup?v=uFxnBrO9n7o&sns=em

 

 

PS. This film is obviously computer generated imagery, not real giraffes. It's very well

-- 

What's next?

Today was busy and active, but had a sense of normalcy (you have to stretch that in my case). We're hoping to get over to Farmers' Market Friday morning. This morning I got registered for radiation to the arm to reduce the pain.  Will start the five sessions next week.

Found the recommended walker at Costco but need to rejoin. It requires the use of two arms so their is no rush.

Not funny to me

Saw the orthopedist today and got the results of the x-ray of my humerus. What do you think, is that a fracture, yes or no?  At least now I have a clue as to why the the pain was so difficult to manage.

I have an appointment tomorrow with my general doctor (I'm taking a lot of morphine, I know that's not the correct term, but my brain simply isn't working properly).

I am surprised by all those who mention praying for me, often strangers, often friends.  Certainly welcome, either way. In the chemo suite I am the beacon of hope as no current patient has outlived the disease this long.  May it continue!

I did learn some things today.  There is most certainly a tumor at the site creating the drop-dead reaction I experienced.  Even I'm beginning to count the days to my own end, but hoping a broken bone is simply a blip.

The next step is direct radiation.  You would think I would be dreading more rads, but no, this is very different. I had brief radiation to four places back in 2002 - for pain relief - (palliative care) and I felt better almost immediately. Radiating a bone is not even almost radiating a sensitive organ such as the bladder.  Hopefully I can get on the schedule soon!

I keep trying to scratch the itch in the crook of my arm - which has suddenly turned to cement.

Ow!

It rained heavily this afternoon, YES!, so the weather is clearly shifting. Folks were waiting for some stoppage so they could plant something colorful and lovely.  I'm waiting for my arm to mend. Tomorrow I go to the orthopedist to get a hanging sling, whatever that may be.  It's used for undone dangling shoulders and the like.

Gradually I'm getting better, if slow counts for improvement.  It hurts like a son of a gun, if three weeks of agony counts.

I slide gingerly out of bed and sort of screech my way to the floor, hoping that will help. It really hurts, that's all I can say, really.

Youngest daughter was away all weekend so Steve and I had some free time to ourselves, wonderful!

Waking up or lying down.....

It was a busy day, but I can't recall all that was done.  I had made a therapy appointment for today, the first in two years so I was desperate to get caught up. I told him I didn't know if I was saying my final goodbyes or just swinging by to say hello. I cried throughout most of the session. Part of the time we talked about Youngest Daughter. I recently told her that I hope to be with her for as long as possible, and the whole purpose of her adoption was to be together as long as possible.  After  an infant son died on his 4th day we began taking in foster children, 26 in all, but we kept her, our one and only adoption. She is now 40, but was a month old in foster care.

We went to the art supply shop and to Barnes and Noble. By then I was totally exhausted and went straight to bed.

Tomorrow will be much easier, I truly hope...

After this comes .......

Next week I figure out what will happen to my dangling arm and shoulder.  In the meantime it's just hanging in a black sling until a heavy sling is applied in an office appointment next week. Hopefully, the two pieces will fall into place and meld together and I'll be well in another six weeks or so.  Then we can move on to the next crisis.

The temp has been in the 90s today so it is really summertime for now. I need to to get back into drawing and knitting and finding new ways to journal my day. This has been a totally horrific spring/summer so far........

Home???? Where else?

Wonky computer, what can I say?

A whole new life?????

I came home from the hospital this afternoon where I am a true regular. I have three doctor's appointments next week and hope to see some improvement.  The fracture was probably due to anemia, caused by the chemotherapy. I was given two more bags of donated blood - I'm up to five now and am grateful.  I'm also taking hourly morphine whether I need it or not to stay on top of the pain without becoming wonky from taking too much.

I was also sent home with a new walker that requires only one hand - with a broken arm that's all I have these days.

Steve and I are looking at these last two years as major life-changing events - one after the other - and now I need to buckle down to whatever time I have left.

Nothing has happened yet, but we're going to an early morning orthopedic appointment in the morning. The decision will be between continued stabilization by sling (the current protocol) or surgery if the risk if surgery isn't too fearsome. The pain is quite high now, especially if I accidentally bump or twist it. God only knows what would happen if i fell again....... the third time.

I can't even guess how this will resolve.


















































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