My baby, baggin' some zzzzzzzzzzz's

Bet you thought I was about to change the name of this blog to ellendewar.blogspot.com, as self-absorbed as I've been. No. It's still about Jimmy, although the spotlight has shifted to my little predicament lately.

Jimmy's doing just great, physically and mentally. We're developing a routine that serves us well: I lie around and he waits on me hand and foot. He is becoming adept at shopping, serving meals, and tidying up. Miracles never cease.

When he's not ferrying me back and forth to Emory for appointments, or attending to household duties, he finds time to work out at the apartment's fitness center three times a week. He schedules lunch dates several days a week with friends (call him when you're in town), and he spends many hours a day conducting business.

Life has thrown some pretty interesting curve balls at Jimmy in the last few years, but in awe I continue to watch his uncomplaining grace, his strength, his steadfastness and good humor in the face of adversity, and his courage is a daily inspiration.

Bag lady

Jimmy took this photo after I went outside to make a phone call (poor cell service) looking like a bag lady. All of our cute young yuppie neighbors smiled sweetly at me as they swished past in their shorts and sundresses and sandals. I wonder what was going through THEIR minds,watching me talk on the phone, all bundled up for Siberia, swinging in that swing like I didn't have a care in the world.

We went to Emory this morning , where Jimmy waited patiently

and Dana looked apprehensive.

This crude graph attempts to show what my blood levels are doing every three weeks. I go into the hospital where they load me up with chemicals, then send me home. After about 10 days, most of the blood cells, good and bad , have been killed, and I'm helpless: white cells can't fight infection, red cells can't carry much energy, platelets can't clot. I'm in bad shape, but our remarkable bodies start to heal quickly, and in a few days I'm almost normal again - until I go back into the hospital and get whacked again.

...sleep that knits up the ravell'd sleeve of care ...

Getting a good night's sleep has made a big difference in my outlook, and Jimmy's,too. Neither of us sleeps well while I'm in the hospital: Jimmy because he's worried about me, and I can't because of the steroids and the people in and out of my room all night and being picked on constantly and on and on and on...

Two down, six to go

I have to undergo eight rounds of this torture, which means I'm 25% through it, and I'm holding up well so far. I got paroled this afternoon. The apartment part I can handle, but those five days in the hospital aren't much fun.

Pat and Rosey brought us some of our own furniture this weekend to replace a few pieces of the rental stuff that's too hard to sit on. We can live with ugly, but uncomfortable has to go. Rosey and Pat spent the night with Jimmy and they went out to dinner and did a little shopping, which was a great boost for Jimmy's spirits.

Jimmy holds on to Meredith, who looks a lot more chipper than she feels.

Bloom where you're planted

I'm still getting the Methotrexate infusion, so while that's going on, they did an intrathecal lumbar puncture and squirted 8 cc's of methatrexate into my spine. They even put some steroid stuff in my eyes. We are on some kind of a search and destroy mission for those nasty little buggers! I feel like I'm getting Astroed for termites.

This cancer thing is so hideous and awful and evil, but you have to look for positive things in your response to it. Jimmy and I work very hard at this - trying to make the proverbial chicken salad out of chicken poo.

One of the funnier things has been about the wigs. We have a catalogue from the American Cancer Society and have bought three wigs already. They have names - the catalogue named them, not us. You've already seen the first one, Dana, who is sweet and predictable. The one shown above is Meredith, and she has an Attitude, saucy and outspoken. Beth, the latest, got sent back for being "too blond", and Lord knows what she's going to be like.

Jimmy says my personality changes when I have on a different wig; I say it's the chemo. Anyway, it keeps us entertained, and somehow I see a biker chick named Juno in my future, and a Mysti with spiked red tresses .

E.T. Phone Home

If Steven Spielberg had seen me while he was casting for E.T., he'd have hired me in a New York minute. With these long skinny limbs and this knobby bald head, I look for all the world like an extraterrestrial.

Thursday afternoon

As expected, things reved up shortly after I was admitted: by 2AM I had gotten Rituxin and was being prepped for the methotrexate. It's midafternoon now, and I've managed a few catnaps here and there , but they almost don't seem worth the trouble.

I'm a few hours into the methotrexate infusion, which lasts for 24 hours, so maybe things will start to slow.

Back in the hospital

9:10 PM We FINALLY got a room , and I'm so tired I'm cross-eyed, and Jimmy is too. He got me settled in, and has gone back to the apartment to crash. I do hope today's difficulties will not prove to be the norm.

Here at the hospital, wing 7E and 8E are used for transplant patients and blood cancer patients like Jimmy and me, but recently, patients aren't checking out as fast as they are checking in, and they literally have not had anywhere to put me. I won't subject you to a catalogue of the day's woes and aggravations. I'm here now and glad of it, and will update soon.

On hold

Round 2 has been postponed until Wednesday morning. The hospital is filled to capacity and there aren't any beds available until then. That's okay with us - we're loving this little respite before I get hammered again.

Round 2

I have felt better for the last 48 hours since before the surgery, and now I'm ready to go back into battle tomorrow. Jimmy will check me into the hospital Monday morning, and I'll be there all week. Round 2 will be much like Round 1, except some of the chemo drugs will be changed around a little.

For those of you who are interested in things medical, I'll give a synopsis of the week:

Hyper C-VAD Course#2: Methotrexate + Cytarabine


Day 1: Methotrexate bolus infusion over 30 minutes
Methotrexate 23.5 hour infusion
Methylprednisolone (SoluMedrol) IV every 12 hrs (6 total)


Day2: Check MTX levevl at end of infusion (if MTX> 20 increase resucue)
Begin Prednisolone eye drops in each eye every 6 hrs prior to CYTARABINE

Cytarabine infusion over 2 hrs IV every 12 hrs
Methylprednisolone(Solumedrol) IV every 12 hours

Methotrexate 12 mg Intrathecal injection

Day 3 Cytarabine infusion over 2 hrs IV every 12 hrs

Begin Leucovorin 50mg IV x 1 then 15 mg IV x 6 hrs starting 36 hrs after start of mtx

Mehylprednisolone IV every12 hours

DAY 4 Check Mtx level (if >0.1, increase rescue)

Day 5 Discontinue prednisolone eye drops. check Methotrexate level.

Cytarbine intrathecal injection

Begin growth factor injections SQ Q24-48 hrs after last dose of cytarabine

Day 6 Before WBC's decrease, Begin:

Cipro 500 mg twice daily

Fluconazole 200 mg 1 tablet once daily

Penicilllin VK 500 mg tablet twice daily

Begin next Chemotherapy Course on Day 22

Home is the hunter, home from the hills, and the sailor, home from the sea

What are some signs that your warrior/hunter is adapting into a farmer /gatherer?


Learning his way around the kitchen?

A newfound ability to toss a salad?

Bouncing in the front door, excitedly announcing," Guess what I got today? A Kroger's discount card!"

The deed is done...

Lookin' good, Jamey!

Another bad hair day

A nurse accesses a port on Sunday, and the subsequent results showed my counts to be low, low, low, but I dodged the transfusion bullet. I feel okay, just weak and washed out, and am sleeping a lot.


And my hair is really starting to come out. I guess the time has come to shear it all off, but oh, the trauma!

Welcome, Amy!

Last Friday at noon, our darling nephew Lee Mackey married a lovely young woman, Amy Harrell Houston, at the chapel of First Baptist Church with their immediate families in attendance. Afterwards, they went to Mac and Susan's for a wedding brunch.

My niece, Elizabeth Burns, emailed me some beautiful photographs of the event, and I've been unable to upload them to my blog, but if I figure it out, I'll share.

We are so thrilled to welcome Amy, her 11 year old daughter Shelton, her parents Marguerite and Ike Harrell, and her sisters into our family. Congratulations, Lee!

Our address

105 Briarvista Way

Atlanta, GA 30329

Saturday

We spent about six or seven hours at Emory, where I had blood tests and an infusion of more chemo - Vincristine this time. My blood counts are bottoming out now (wbc <.3, rbc 3.64, platelets 56) and I don't feel too badly, just very tired. (I hope you appreciate the effort it is taking to mash these keys right now!!) Started back on dexamethasone (high dose steroids that don't sit well with drama queens like yours truly.)

We'll go back to the hospital at 8AM Sunday morning for them to look at my blood counts and see if transfusions are in order.

Just a couple of American Beauties:

Jimmy's finally feeling normal and gets A+++++++++++++++++ in Caregiving. Who'd've ever thunkit?

Tuesday morning at Emory and Tuesday afternoon at Tuesday Morning

My appointments at Emory today went very well, and Jimmy and I came away quite pleased with ourselves. My numbers look good, and the nasty tumor in my abdomen that has made me so miserable has shrunk considerably, after only one week's treatment.

On our way home, we were mulling our options in the apartment for lunch when I announced that I wanted to go to Houston's. I was hungry all of a sudden.

I wore my mask in, but we had a lovely time: I got soup, Jimmy a salad and we split the French Dip with fries. It was great.

We also stopped on Briarcliff at a Tuesday Morning and bought some new bed linens: the bedspread that came with the apartment is a thick, slick, shiny thing that keeps slithering to the floor.

At the checkout counter, there were some Steiff stuffed animals, and I couldn't resist getting a little Andy substitute to put on the back of Jimmy's chair. He just doesn't look right without a dog perched on his shoulder. And if things continue to go this smoothly, we should be able to bring Andy up here before too long.

Jimmy also bought a new coffee mug - the apartment ones only hold about 5 ounces. I applaud his selection.

Monday evening

Don't worry - I took this photo Saturday while we were waiting to be discharged from the hospital. Jimmy found the chair in our room horribly uncomfortable, so the sight of Jimmy and me crammed into my hospital bed became a familiar one to the staff.

We've hardly done anything for the last 48 hours but sleep, and it's what we've needed. Jimmy's fighting off a cold or something, and is hoarse and sniffley, but better today. We go to Emory tomorrow for me to have bloodwork and out-patient chemo.

The springlike weather today allowed us to take a stroll around the apartments, then a short foray to Whole Foods next door for provisions.

Saturday afternoon

I'm not feeling very well today, but am out of the hospital, and we are back at the apartment, which is heavenly. The events of the last four weeks have been terribly hard on Jimmy, physically and emotionally, and he's exhausted. We have every thing we need here, and are going to spend the next couple of days hunkered down, licking our wounds. We'll be fine.

All is well

I do believe they are throwing everything in their chemo arsenal at this thing, but I'm holding up very well under the onslaught. My complaints are minimal.

The large doses of steroids make me crazy - jittery and shaking, laughing one minute then crying over nothing the next. Having been through all this, Jimmy sits there and laughs at me, which makes me laugh. A nurse was telling me about one woman on steroids who had her credit cards with her and bought everything they put up for sale on QVC one afternoon.

Pardon me if I'm giving Too Much Information, but my weight was up 20 lbs this morning from all the fluids they're pumping in, so now I'm on a diuretic and running to the bathroom every 5 minutes. They may have to postpone the spinal puncture scheduled for this afternoon. No way can I lie flat for a couple of hours!

Is this a great card or what?

On a lighter note...

If you find the Dynamic Dewar Duo's neverending battle against cancer a bit of a downer, may I recommend my lifelong friend Ed Hanahan's new blog: http://www.asiandiary2010.blogspot.com/

In early February, Ed embarked on a trek around Asia, and he's blogging as he goes. It's a fascinating read, and a lot of fun.

6 AM Wednesday

I got a blessed 7 hours of sleep last night, after none Monday night - as my treatment hums along , my room buzzes day and night with activity. The speed and professionalism of this program is comforting and gratifying.

I love the team of doctors and nurses, whom we got to know so well during Jimmy's long stint up here, and they seem delighted to see Jimmy again, looking so healthy and fit. Several of them told us about how they get attached to patients, but never see them again, and wonder how they're doing. It has to be nice to see the fruits of your labors.

I'm right now on my 3rd infusion of Cytoxan (3 hr infusion) and had my first 6 hr infusion of Rituxan yesterday, and 40 mg of Dexamethasone a day. There are premedications, Zofran and Compazine for nausea, and Benedryl and Tylenol, and you're being checked constantly for any adverse reactions. So far I'm tolerating everything very well. My blood pressure dropped to 96/40 with the Rituxan, but they slowed the drip and I finished it.

Last night I had to have a lumbar puncture which wasn't as bad as I'd feared. They stick a needle in your back and draw out 8 cc of spinal fluid to be analyzed, then inject 100 mg Cytarabine, another chemo drug. Then you have to lie flat on your back for an hour to prevent a spinal headache.

This just hit the high points - when you factor in the constant monitoring and the blood and urine samplings and everything else that goes on, it's pretty hectic.

I'm glad I found an early morning lull for an update - things are about to start gearing up again.
And thank you for the prayers and emails and cards - they mean the world to us, so DON'T STOP!!!

Jimmy's found himself a quiet corner to get out of the fray.

Nurse Amy and Ellen

The bad news: bad hair day (but it's still real!), no make-up (who cares?), and 10 lbs of IV water retention and steroid bloat (it's temporary)

The good news: I'm still smiling! (sort of)

Snow!

Phyllis, one of the nurses, bounced into my room this morning, as excited as a little girl, "Put yo book down, miz Doo-ah, and come look out this winda!" I did and it was beautiful; it's funny how a little snow gets us Southerners so worked up.

At the same time, Jimmy was getting ready to come to the hospital, and took this picture from a back window in the apartment.

Home away from home

What would we do without Jamey? He stocked our larder, unpacked the van, and got us settled into our new residence last night.

10PM Monday

A 2 lumen port was put in this morning, a little below my right collar bone, and it's sore, but not too bad. The hospital is full, and while I was in the OR, they had to give my room to an emergency case, and we waited all day for another room to come available. We were comfortable, but it threw the schedule off a bit.

Jimmy was finally coerced into going back to the apartment at 8:30, and he's worn out. He promised he'd sleep late tomorrow, and try to take things easier: the last thing we need right now is TWO patients up here! And the circumstances are very different from what they were when he was first admitted. He was a complete invalid with a broken back, and except for having cancer, I'm as healthy as a horse.

They're giving me Cytoxan and dexamethasone tonight, then a lot of other vile stuff over the next few days, but I can't remember exactly what. I expect things to be really busy this week, but I'll try to update often.