Day 13: Free at last, free at last

Day 13: Free at last, free at last

WBC: 26
Platelets: 48

Richard came home today.

After I picked him up at the hospital, we had a quiet ride to our house. Richard was savoring just being outside for the first time in two weeks. He's so happy to be home.

When we got to our house, he went from room to room taking it all in. He checked on the plants in the backyard, too. They're still alive, which is a miracle. I've always confessed that the only things I can grow are children.

He spent the day on the barcolounger (thanks again Jeff), remote and phones in hand. He watched the US Open, then went to bed at 9. His appetite is a little better, due mostly to having non-hospital food. I asked him what he wanted for dinner, and he said "steak!" Steak it was. Even though I had to cook it forever (he's still on a low microbial diet), it was tender enough to have good flavor. He had about two ounces of steak and a few bites of well-scrubbed, steamed squash. The squash was the first vegetable he's had since he left home I think! He couldn't stand the smell of anything cooked in the hospital.

We're on fever patrol right now, taking his temp twice a day. I'm also extremely careful about cleaning door handles, and anything he touches. When his counts are higher in a couple of weeks, we can be less diligent. Right now I have lysol bleach wipes in the kitchen and bathroom, though, and use them throughout the day.

Richard has doctor appointments over the next few days and weeks, but having him home is very sweet.

Day 11: The hopeful uptick.

Updated Wed 11 a.m.

WBC: 0.4
Platelets: 20
Lbs. Lost 10.4

We're hoping Richard has turned a corner in his recovery. His white blood cell and platelet counts went up ever so slightly. This is the first uptick since he was admitted, and we and the doctor are hopeful that this marks the beginning of a restoration of his blood counts. In addition, he gained a fraction of a pound. The odd thing is that today was also the first day that he had a slight fever (99.3). (Shrug.) When I left this evening, I checked his temperature and it was 98.8 (just call me nurse Robin), so hopefully it will stay down. He still doesn't feel all that well, but we're hopeful that we see that glimmer of light that heralds the end of the tunnel.

I just fell asleep typing this. I looked up and saw a long line of llllllllllll's. Time to sign off. In the morning I'll post a couple of pictures from today.

Wednesday a.m. after a good night's sleep:

The Wall (you can see just the top of the huge yellow, two-panel get-well card from the anniversary party...thanks, Liz and everyone!)

Richard's general reaction to eating when the food nazi brings him chicken noodle soup. Note the matching blue jammies and cup, always the sign of a good patient.

Day 10: Holding, holding...

WBC: less than 0.4
Platelets: 16
Lbs lost: 11

Things were a little better today. Richard seemed to feel better most of the day until late afternoon. He was able to eat a little, but had lower GI troubles in the afternoon.

As can be expected, Richard has made friends of all the nurses. The nurse assistants have taken to sitting down and talking about family and travelling with him. As for me, I've become a food nazi, asking for special orders of peanut butter and jelly sandwiches and popsicles for Richard so he'll eat. Last night I asked a nurse to please use the foam antibiotic when she comes into the room. It's sort of like a good cop/bad cop thing. Guess who the bad cop is.

The doc thinks we're ready to see the numbers start to come up, and they can't tick upward soon enough for us. I cannot wait to get Richard home, even though it means I have to do some major housecleaning before he walks in the door (bleaching/scrubbing to get rid of those pesky microbes). I've half forgotten how to do deep cleaning, but I do have those stinky plastic yellow gloves! Now if I can just find a sponge...

Another pre-SCT photo because I still can't find my new camera. I really hope it just fell under a car seat...

Things we're thankful for: The Fam.

Day 9: Tomorrow is another day...

WBC: less than 0.4
Platelets: 23
Lbs lost since SCT: 11

Yes, I know. Vivian Leigh's character was annoying in Gone With the Wind, given to stating the obvious, such as "tomorrow is another day." (Wha? It is?) But the statement seemed fitting.

Today was not the best day on the SCT roller coaster: mouth discomfort, throat pain, nausea, lower GI problems, throwing up. The mephalen he took last week is doing its job. No time for boredom today.

Richard's counts should start swinging up in a few days. He's receiving Nupogen again, to stimulate stem cell production. We expect him to have a blood transfusion if his platelets go much below 20. We'll see where he is in the morning. I looked back in my notes from January, and the doctor said approximately 50% get mouth sores, 99% get diarrhea, and the majority have fevers and blood transfusions. We seem to be on target. Yay for normal sickness.

We did manage to watch a nice little international film titled "Turtles Can Fly." It's a powerful film about a group of orphaned children (Kurdish refugees) on the Turkey/Iraq border trying to eke out a living finding and selling land mines prior to US forces' arrival in 2003. [This was the first movie filmed in Iraq after the fall of Hussein's regime.] It was not light or funny, but very moving. We've watched our share of Friends and Seinfeld over the last week, so this was a nice balance.

Unfortunately, I forgot my camera today, so all I have to offer in the way of pictures is this one from two days ago. No, he's not praying. It's a "this cellblock is too small" moment. We are listening to Mozart's flute concerto #1 and #2, and Richard is imagining himself conducting. Note the pencil "baton."

The orchestra did quite well under new leadership.

Day 8: Kumbaya

WBC: less than 0.4
(I guess readings below this level are not reliable since they're so small.)
Platelets: 43
Lbs lost: 10

We understand that the anniversary luncheon on Saturday was grand, that a good time was had by all, and that people trekked over to L&N's home for an after-party. One thing about Richard's family--their parties last for days!

As promised, today the music therapist dropped off a guitar for Richard. Basic instruction is happening in the photo: "This is a string. This is your finger. This is your finger on string."

Richard continues to eat very small meals, but he has to force down anything other than ice cream and saltines. Everything tastes really odd to him. He's been craving chocolate, and specifically an Almond Joy (which is weird, because I've never seen him eat one before). I bought one today, and even the candy bar tasted odd to him. Those taste buds are falling down on the job.

I also brought in some playing cards, and after a good wipe-down with the handy-dandy green antibacterial spray (wiping down the front and back of 52 plastic-coated cardboard rectangles is fun!), we played the two-player card game Casino. We only got through a practice game, but the competition should heat up in the days to come.

Thanks for all the calls, gifts (thanks Cyndi!) and cards. Richard's closet door is getting cozily cluttered!

Day 7: Happy 60th Anniversary!

WBC: 0.5
Platelets: 63
Lbs lost: 8

Richard and I send out a huge Happy 60th Anniversary to Richard's parents. We're sorry we can't be with you and all your friends and family to celebrate your anniversary! The nurses have asked if you wouldn't mind sharing your secrets!

We love you. Have loads of fun and a drink or two for us!

(Now back to regular programming.)
Yesterday and today were pretty good days. Boredom and occasional nausea were the only spoilsports. For dinner today, Richard ate two servings of ice cream and an entire half of a turkey sandwich! There was dancing in the halls over that one.

Alissa sent Richard a bag-o-goodies, sans Scoobysnax...











and Daniel brought him an electric shaver. Richard can't use a razor on those remaining stubborn facial hairs, but the shaver gnaws away at them without nicking the skin.










Nurses' attention has shifted from Richard's food intake to mouth sores. His mouth is now the center of attention. At each shift change, the new nurse will come into the room, reach for the blood pressure cuff, and ask, "How is your mouth?" They peer inside and nod their heads knowingly. They keep expecting fever and mouth sores, but nothing so far. Morphine is ordered and ready to be administered when the sores pop up. I hope they never arrive and that Richard stays healthy during the rest of his hospital stay (1 to 1-1/2 weeks)! Five mouth rinses a day and hypervigilant bacteria patrol may be helping, but we'll see.

Final note: Richard continues to make progress on exercising, and we're up to six hall laps, three times a day. Next stop: Mr. Universe pageant.

Day 5: Lyre, lyre

WBC: 1.2
Platelets: 143
Lbs lost: 6

Sometimes boredom is a welcome change. Richard felt only moderately nauseated today, which is a big improvement over the last six days. Boredom is better than nausea. Today he spent proportionately more time sitting in the chair, doing exercises, and cruising the hall than on previous days. Who would have thought that boredom could be so great?

During one of our hall cruises, we picked up a hitchhiker: the BMT ward's musical therapist. She brought in her lyre and strummed a few haunting melodies. Richard loved it. She promised to lend him her guitar over the weekend, since he is interested in learning how to play. I hope the other patients and nurses don't mind. At least it's not the drums.

This lyre is made of ash wood, and it is absolutely beautiful. We briefly talked about Larry's skill at taking all types of wood and making wonderful crafts and pieces of furniture. Richard loved having the break in his day, and looks forward to having her stop by a couple of times a week.

No movies tonight. We spent time reading and trying to solve today's gosh-darned crossword puzzle. We're determined to finish one by the time he leaves the hospital.

Richard is eating more, but he still can't tolerate the smell of warm food. Crackers, bread, muffins, ice cream and popsicles are his friends. And don't even mention cooked foods. The words "turkey and gravy" or "mashed potatoes" cause his face to grimace and contort uncontrollably. If I weren't so kind, I could use that against him, I suppose. [What? You disagree with me? MASHED POTATOES. That's right. Don't mess with me, bub.]

Best moment of the day:
Richard: (Looking out the window.) Do you ever wish you could fly?
Robin: (Reading a book.) I really don't like flying. I hate landings.
Richard: No, I mean flying flying. I wish I could just open this window and take off...Where would you go if you could?
Robin: Probably Italy. I would offer myself frequent flyer miles, too. Where would you go?
Richard: With you.

Day 4: A Room With a View

WBC: 1.4
Platelets: 179
Lbs lost: 6


Today was a pretty good day, overall. Richard felt well enough to sit in a chair for a while. The freeway is in clear view from his window. We really don't need a clock in his room. The traffic patterns are definite indicators of what time of day it is.

I knew Richard was feeling better today when I returned to his room at 2 pm and he was on his knees in bed leaning over the bed rails to change the CD player that sits on a ledge by the wall. I was so afraid he might fall that I just stopped in my tracks like a deer in headlights. (Fair warning here, you do not want me with you in an emergency. I freeze. Or scream. It's not pretty, and I'm pretty much useless.) By the way, see the blue band on his right wrist? That's an indicator that he is a fall risk. (Fans self.) I'm still worked up over that. But I was also pleased to see he was feeling so well! What's a girl to do.

Other evidence of his feeling better was his cruising of the BMT hall. He took five laps this evening. Another patient was taking laps in the hall, and it felt a bit like a transplant version of Nascar. Each person wore a fashionable green gown, clutched tightly to preserve privacy, and they each pushed an awkward portable drip machine. You could tell we were in the US, though. Richard and the woman stayed on their respective right hand side of the hall, looping around counter-clockwise. At one point Richard whispered, "I think I'm gaining on her." Yep. He's feeling better.

Bicep curls, hospital-style.













Checking for progress. Yep. Feeling better.













Things we were thankful for today: new cards to post on Richard's wall; telephone calls from Richard's work colleagues, friends and family; coffee time for Robin and Alissa (thanks Lisa!); and flowers for Robin waiting on our doorstep (thanks Kristen!).






A big thanks, too, to neighbor Bill who helped me haul a huge mattress to the curb at 10 pm for the semi-annual City of Sacramento Crap-on-the-Curb event.

Day 3: Look out, Ahnold...

That's right, Ahnold...Richard is buffing up.
Be very, very afraid.

WBC: 1.7
Platelets: 243
Lbs lost in hospital: 5

The physical therapist comes by once a day now, making Richard do exercises to maintain his muscle mass. It's amazing what you can do just lying down: pushing one's knees down, clinching the glutteus maximus, flexing the feet, and doing bicep, tricep and othercep curls. Bed potatoes, all together now...a one, and a two. Slow and steady now. Three and four. Tired? Hah! Five and Six. Rest and begin again. (You can almost hear the whip snapping.)

Richard's nausea is unrelenting, so the doctor ordered a New! Improved! nausea medicine, Emend (not sure of spelling yet). It seemed to help a little. Richard's nausea is now at a 5 (on a scale of 0-10...it's been at 6-7). He had a few bites of cream of wheat, toast, and two saltines. He's lost five pounds, but I'm determined to put those pounds back on after he's home. He's a little tired of me asking him every couple of hours if he feels like having a taste of pudding, or a cracker or ice cream. I think he finally succumbs because I'm such a pest. But, really...what he's doing is rewarding my behavior! (Psych 101) I'm always so pleased when he says, "Okay, i'll try a cracker." Funny how basic things, like eating and drinking, become the most important things in your day at times like this.

And that's all the news fit to report. Thanks to all the callers today. It helps. P.S. I'm printing off the blog and responses each day for Richard.

Keeping the lungs fit, too.
And blow...slow and steady...two, three, four.
Good, now nine more times.










Things we were thankful for today: Great day/pm nursing staff (thanks Lorri and Zoraida); Seinfeld; and our children (which brought some tears and hugs this afternoon).

Day 2: The green bean episode

Day 2:
WBC 1.9; Platelets 293

Richard had one setback but two successes today. He went past the point of nausea today. I' m not sure why, but three things prefaced the event: the new morning nurse did not give him anti-nausea medicine for 7 hours; the new physical therapist worked him around and made him walk down the hall and back even though he had just done so; and I arrived in his room with a cup of green beans right as he sat down after his walk with the PT. He looked at me and my green beans and. Well... I had been so pleased at managing the nausea up to that point. Sigh. I guess the smell of my green beans sent him over the edge. Oy vey.

But! Richard also had a couple of small successes today. After the G.B. episode, he ate three bites of applesauce, 1/2 of a mini-vanilla wafer, 3/4 of a cherry popsicle and one saltine cracker. I believe those represent the four food groups. He walked back and forth in the unit hall a couple of times, too, which was great. And he felt well enough to sort of watch two movies: Rounders (thanks, Alissa!) and Along Came Polly.

I love my new little digital camera, so I took some pictures of Richard's room today. Archeologists might call this research about a person's lived environment?

The Board











The Other White Board












Evidence of success?












The blur is not due to speed of subject...















Things we appreciated today: Calls from Nathalie, Jeff, and Kristen; a new CD player for soothing music; Alissa and Ryan's DVD collection; and free parking.

P.S. Short phone calls and cards are very welcome. I think the phone was "off" a couple of days ago, but that was unintentional.

Day 1: Sleep on...

Well, today was uneventful. Thankfully. Richard slept almost all day, due to the continued influx of anti-nausea medicine. He ate two saltine crackers and another 1/2 cup of vanilla ice cream. Nice diet. He also took a shower and managed to catch a few minutes of the Little League World Series. [Now, seriously, how much more excitement can a guy have?]

I took a picture of him watching Little League, and he asked that I retake the picture of him smiling so I could put it on today's blog.

Richard started a new regimen of "anti" drugs today. Just say NO to infections! Here's the cocktail:
- acyclovir (prevents viral infection and herpes-type things)
- ipofloxcine (prevents bacterial infection)
- diflucan (prevents fungal infection)

He's also cycling through zophran, ativan and compazine every couple of hours to control nausea. His heart rate, blood pressure and temp remain stable. We're tracking some blood counts on a white board next to his bed, and I'll share those with you each day. We can watch his counts bottom out. Fun, fun, fun. Here are counts for day -1 (8/17) and +1 (8/19), respectively:

WBC (white blood cells: fight infection): 3.4 3.1
HGB (carry oxygen): 12.0 10.1
PLT (platelets help clotting): 401 296


For those of you who have persevered through all the medical talk, here are pictures from Tuesday's trip to Bodega Bay:

The rocky cliffs and some of the dozens of otters that can be seen from the hotel restaurant.





















Richard on a walk.
















Richard and Robin on a walk. This is a bluff off Highway 1. You can't tell, but the ocean is just yards away, behind us.
















Ready for breakfast before heading home on Wednesday.
This is my favorite picture. I might have to repost this on Sunday.













Things we appreciated today: my mother's return home after a week in the hospital; a new, easy to use digital camera; and glorious, oblivious sleep.

Day 0: Cold blood, warm heart

Richard was infused with his stem cells today. Here he is before being majorly drugged with anti-nausea stuff.

Although the actual infusion lasted less than five minutes, there was a bit of formality and protocol in the delivery of his stem cells. Four nurses were involved in the process; another two popped in to "help" but I think they just wanted to be part of the excitement. Eh. I don't blame them.


One nurse hauled in the large tub carrier on a dolly. This tub had stickers on it from all sorts of travels from what I could tell. It reminded me of the old steamer trunks plastered with labels from around the world. After one nurse unlocked the tub (shown in the picture...this is a new digital camera, so this first shot is a bit shaky) , another nurse donned large blue gloves and scanned a doohickey on the top, which unlocked an inner container. She then reached in and removed the frozen bag of cells. Her gloves were coated with ice. It was so cool (no pun intended). Several checks of numbers, name, and birthdate between Richard's arm band and the blood product were done.



The Icy-Gloved nurse handed the small packet of frozen cells to Bath nurse, who kneaded the bag in a warm bath until the cells thawed.





Bath nurse handed the bag to Hangingpole nurse, who verified that Richard's arm band matched the blood product. Again. She then hung the bag up on the pole, and inserted it into Richard's port. The nurses mentioned that in the "old days" (12 years ago), they would have about 10 bags to thaw and administer. This was a piece of cake! It took only a few minutes and they were done. It was a bit anti-climactic after all the Nasa launch-like activity.





Richard pretty much slept through the whole thing. The whole day, really. They had him on all sorts of anti-nausea drugs, including ativan. He woke up around 7 p.m., still groggy and mildly nauseated. Our goal at this point is to prevent him from throwing up. The only food he had today was about 1/2 cup of vanilla ice cream. The good news is that he kept it down. They took off the blood pressure and heart rate monitor around 6 p.m. He continues to use a medicated mouth rinse 4x/day to prevent the very common mouth sores that SCT patients get. Other things that might happen are: garlic odor for a day and red-tinted urine.

He's even cute when sleeping...

Richard's parents, Larry and Nathalie, dropped by in the afternoon. Richard was awake for a few minutes toward the end of their visit, so I was able to take this picture before they left.

















Thanks to everyone who has called or emailed or posted something on the blog. It means a lot! Since we're really not supposed to use cell phones in the unit, calls can be made directly to the hospital (916.454.2222). He's in room 4317.

Day -1: Resetting the "block" (the blog clock)

We're resetting the numbered days on this blog to correspond with stem cell transplant protocol, where Day Zero is cell infusion day. Since that's Friday the 18th, today was....well....-1.

After a relaxing day and night in Bodega Bay (pictures to follow tomorrow), Richard checked into Sutter General this morning. They cleaned his catheter port, drew blood, and put a new dressing on his port site. He received a drip bag of premeds (ativan and another nausea-fighting drug called zophsomething...I left our notebook at the hospital). Then the melphalen was administered through his port at 1:30. It only took 30 minutes. Alissa and Dan visited during the late part of the afternoon, then dinner and the 1960's movie "To Sir With Love." And more ativan. He receives his clean cells at 11:30 on Friday. We hear that the substance used in freezing the cells makes the patient smell like garlic(!).

Note: I lost my cell phone on the trip, so I've temporarily suspended service. However, you can call or send any non-flower/non-organic mail to Richard at Sutter General Hospital.

Things we appreciated today: Good nurses--those who strike that precarious balance between efficiency/professionalism and caring.

Day 26: Bodega Bay Bound

Since Richard will be confined to a hospital room for 2-3 weeks starting this Thursday, we decided to run away for a day. We're renting a car on Tuesday and driving to the coast. We're headed for Bodega Bay (about 2 hours away), but who knows where we'll end up.

We have sunscreen for newly-exposed skin, a camera, and 24 hours to enjoy.

Let the road trip begin.


A bit of trivia: What actress played the lead in Hitchcock's The Birds, which was filmed in Bodega Bay? [Hint: She is Melanie Griffith's mother.]

Day 24: Babies and Countries

Wonderfully, and thankfully, life moves on. Illness arrives in some places, while beauty and life arrive in others. Recently, our oldest daughter announced that she is pregnant with our first grandchild. We are so excited! Life is sweet.





On an interesting but less exciting note, we discovered this blog has been visited by readers from nine countries: Australia, Canada, France (Hi, Suzanne!), Indonesia, New Zealand, Philippines, South Africa, United Kingdom, and of course the United States. Some of these have been linked from other cancer survivors' pages, and many have arrived via Gracie's onewheelforlife blog. It's fun to be part of a global social connecting, however brief and anonymous.

Things we appreciated today: An outdoor cafe, the exuberance and potential of youth, good hospital care, and bran muffins.

Day 22: Cleared for Take Off

We met with the oncologist today and set a date for the stem cell transplant: August 17. Richard will first receive a high dose of the chemotherapy mephalen, followed by a reinfusion of his now-pristine stem cells. He'll be in the hospital 2-3 weeks.

The doctor remeasured Richard's height today: 5'7". That's down an inch from about six months ago, but maybe it's just that all that hair is missing! Everything else (lungs, other vital organs) was fine, too, so we are ready to go.

Things we appreciated today: A new cap from our daughter, to protect Richard's bald pate from the sun!

Day 20: Bald is beautiful, baby.

[Special kudos to those who remember what TV character said that. Lollipop, anyone?]

Nephew Shiloh trekked to Sacramento and buzzed Richard's scalp yesterday. I'm not sure whether Richard looks like a convict or a Hare Krishna guy. I'm still shocked when he walks into the room. Who is that man? Scary yet mildly exciting.


Here are some pictures to chronicle the day.

Shiloh arrives and can't wait to turn on that razor!











Shiloh shaves one of his fingers to show what a level 2 cut looks like. New finger trend.










We briefly try out a mohawk and decide it looks better on Daniel Day Lewis. Richard looked rather punk for about 3 minutes.














Father O'Shea at your service.














"If I concentrate really hard, I won't nick him and open myself up to a lawsuit."















As any good barber would do, Shiloh trimmed up the eyebrows. Lawyer by day, barber by night.











It. Is. Finished. But at least they swept up.




















No children were harmed in the shaving of this man.


Things we appreciated today: Our newly pruned tree, our newly pruned guy, and foot rubs. Ahhhhh.

Day 19: Hair Today, Gone Tomorrow

So the expected has occurred. Richard's hair is falling out. Here a little, there a little. Some in the sink, some in the shower, a lot on the pillow. Finally, I'm not the one clogging up the shower drain.

Richard's scalp looks a bit mottled at the moment, so he's planning to have his head shaved tonight or tomorrow. It's the look du jour: bald and beautiful (smooth and handsome?).

At least there are no small children to alarm with Richard's new look. When the children were very young, Richard sported a big beard (remember the days?). One day he shaved it off, and our daughters wouldn't go near the New Scary Man for at least a day.


Thing we appreciated today: Cool breezes, clean catheters, and calm before the storm.

Day 13. Over the limit

We got a call from the oncologist last night. They harvested 13 million good stem cells, which is about 4 million more than they need for two transplants. So we didn't have to go in today. Hurray!

Now we wait for a couple of weeks. Around August 22 Richard will go back to the bone marrow transplant ward to get the heavy-duty-chemo melphalen, followed by reinfusion of his "clean" stem cells. More on that later. Right now we are basking in having nothing to do cancer-wise except "catheter care" a few times a week. Think of catheter care as housecleaning for the trifusion port. I doubt they use Mr. Clean or 409, but they flush it well to prevent infection and to keep the line open.


Here's a picture of Gracie and Richard at the infusion center yesterday. It was great to see her after her 3500+ unicycle journey across the US. She rode on behalf of the Leukemia and Lymphoma Society. Amazing.

Things we appreciated today: Family pics. Digital pictures are great, but there's something wonderful about handling 30-year-old photos.