Day 12: It's Harvest Time

No, it's not time to bring in the sheaves, but it's time to separate blood!

Get this:
Richard's WBC on Friday: 0.49
Richard's WBC today : 29.0

I know, I know. Pretty amazing. All that sternum pain was worth it.

Today we headed to the infusion center at 7:30 a.m. in order to harvest the hopefully millions of new stem cells that Richard's body has been producing over the last few days. I'm not a morning person, so this was challenging. Thank goodness we only live a few minutes away.

This picture looks a little fuzzy, almost surrealistic, because even the camera had a hard time focusing at 8 a.m.

The apheresis machine awaits blood. This could be the name of a horror movie, no? I did not add the blue tint. My camera caught the apheresis eeriness.












Nurse Betsy helps Richard with his green gorgeous gown and blood pressure cuff accessory. He looked stunning.

After weighing, poking and gowning (I can and will make a verb out of any noun), Richard was hooked up to the apheresis machine. This machine looks like it can spin yarn from lambs wool, but it really takes blood from the patient and whirls it around in a centrifuge, thus separating plasma, red blood cells, and "stuff." "Stuff"(c) was the official term (sort of) given to us by one of the nurses yesterday. Stuff(c) contains stem cells and lots of other blood products. Once the machine recognizes the stem cells contained in the middle layer of Stuff(c), it sucks it up into a bag. Each draw process takes about 40 minutes; Richard had six draws.

On the left, Richard "King for the Day" on his apheresis throne. Note the wilted corsage, aka trifusion catheter. More on that later, with a special picture just for Dale...


The courier arrived about 2 pm, and they boxed up the bag of stem cells and the separate bag of plasma (which is whitish-yellowish). The box was taken to Alta Bates Hospital in the Bay Area. We find out tonight how many stem cells were harvested.

We will repeat the process tomorrow. The plan is to harvest enough cells for two transplants--one for now and one for the future.

Highlights from today:

--Dale, Kimberly, Sarah and Gracie The Unicyclist visited.
--I was able to add several more rows to a scarf I'm knitting for a very good friend. This is good news because I started it in May 2005.

Things we appreciated today: Sutter Cancer Center's valet service, foam antibacterial lotion, and caffeine.

P.S. Here's a final picture just for Dale, the man with no beard. Warning: rated "I" for icky.

Day 10: Yep. The neupogen is working.

Friday night was a wee bit difficult. We were awake at 2 a.m., sitting in a darkened living room, waiting for vicadin to kick in.

Richard began to have severe pain and throbbing in his sternum late on Friday afternoon. Richard wasn't sure if it was heart problems or something else. The doctor mentioned that he might have pain in the chest, hips and long bones as the neupogen began working. Apparently, the drug accelerates the growth of white blood cells, which then push on the mass in the bones. I don't think Richard imagined the pain could be this severe. We had vicadin on hand, but the pain takes about 30 minutes or so to subside. Then after 3-1/2 hours, it all begins again. It reminds me a little of labor contractions. You know the contractions are working to produce something wonderful, but the pain sometimes is unbearable. Saturday morning we told one of the nurses at the infusion center about the pain in his sternum, and she beamed and said, "Great!" I loved her reaction. Yep. The neupogen is doing its job.

Richard is scheduled for stem cell harvest on Monday at 8 a.m. It's an outpatient procedure that takes about four hours.

Things we appreciate: Netflix, family, and Vicadin.

P.S. Gracie finished her coast-to-coast trip on a UNICYCLE! Check out her blog in the sidebar. Congratulations, Gracie! You are an amazing woman.

Day 8. The White Blood Count Ride

After several uneventful days that involved daily neupogen shots, Richard got blood tests and met with the doctor. This was the first time we had seen the doc since last Sunday. Richard's port site appears puffy, so the doctor put him on two antibiotics. Richard seemed to tolerate them well this evening.

The cytoxin administered last week is effectively suppressing Richard's white blood cells. Richard's WBC was 0.46 today, dropping from 5.3 two weeks ago. Normal range is 4.2 to 10.0. If all goes well, his WBC will start climbing back up in the next day or two. Stem cell collection is next Monday or Tuesday. Richard's red blood count is 3.53, down from 3.9 two weeks ago; normal range is 4.6-6.2.

For you Multiple Myeloma buffs out there, here is Richard's IgG count over the course of the disease/treatment so far:

IgG
1/6/06 - 9171 (Week of diagnosis) Normal range is 700-1600.
2/3 - 9215 [quite active tumor loading; this was pre-inductive treatment]
3/1 - 3806 [achieved a dramatic drop with Thal(200mg)/Dex(40mg 4 days on/off)]
4/24 - 3225 [slowed progress due to treatment ceasation because of drug rash from Thal]
5/18 - [change in treatment to Velcade/Dex(40mg 1x/wk)]
6/12 - 3183 [Velcade only moderately effective at minimizing MM]
7/10 - [stop all treatment in preparation for stem cell harvest]
7/20 - 2808 [admitted to hospital for cytoxin]

Thanks to everyone who has written comments on the blog and sent comments separately by email. We're a little slow in responding, but we'll get there!

More things we appreciate: Friends who make us laugh. For me, it means going out with my girlfriends and discussing topics ranging from religion to Marky Mark. Thanks Monika and Lisa.--Robin

P.S. I took a picture of Richard's port for those not faint of heart. See below.


Richard - Port 7-06

Day 5. Yesterday's Aha Moments

Aha Moment Number One.
After wondering why no comments had been posted on this blog, we realized our error! We needed to "accept" comments before they were published. Oops. We were so relieved to know people were responding to our posts. The silence had been deafening! Many thanks to everyone who has sent good wishes, comments, and suggestions.

Aha Moment Number Two.
After driving to Davis in 105 degree heat (with no car air conditioner), we realized that we probably should schedule morning appointments. Richard was flushed, lightheaded and a little confused after the ride. We walked into the doctor's office and felt like we had just walked into a meat locker. The cold never felt so good. On the way home, with the windows wide open and the hot air circulating around us, we reveled in the ag scenery from the causeway.

More underrated things: The comfortable and comforting silence between two companions.

Day 4. Nifty Neupogen

We went to the hospital today for the first of ten days of Neupogen shots. Neupogen is Amgen's registered name for filgrastim, or a type of G-CSF (or Colony Stimulating Factor). I believe these colonies are not populated with real people...

Neupogen increases stem cell production. We hope to harvest a lot of stem cells at the end of the month--enough for two transplants (one now and possibly one down the road). This stem cell acceleration is a little like the Forest Service planting fish in lakes for tourist fishing. In this case, we would be hoping to catch 10 million trout.

They administered 2 ml of neupogen (that's a double dosage) in shot form in the back of the arm, subcutaneously (a fancy word for just under the skin...not in the muscle or anything). Well, Richard has very little subcutaneous fat, so they took a hunk of flesh and pinched it while slowly administering the stuff. The nurse said that if you apply pain somewhere else on your body, it lessens IV or shot pain. I guess your brain can't really deal efficiently with more than one pain site. She said she pinches her leg when having blood drawn. That's our Tip For The Day!

Richard felt pretty good today. He had no fever, but felt a little fluish--a general tiredness and malaise. His blood pressure is still low (99/67). Lots of calls from friends and family made the day go by fast for him.

More things highly underrated: Television. To a sick person, TV provides distraction and healing laughter. God bless Seinfeld and the many cable sports channels.

Day 3. Home again, home again, jiggety jig

Richard ate breakfast this morning, thus successfully passing Round One of the BMT journey. Reminds me of when I used to play Ms. Pac-Man. I "ate" all the little orbs, which enabled me to move on to a more challenging level.

After many instructions and a still-intact "trifusion" catheter in his chest, Richard and I headed home at 10 a.m. His blood pressure is still low (99/57), but higher than yesterday. We only live about five minutes from the hospital, which is so helpful. Ah....home, sweet home. Even better was "shower, sweet shower."

To keep the port and area around the port dry during Richard's shower, we put saran wrap over part of his chest, stuck in place by waterproof tape. With hundreds of thousands of patients needing these sorts of "cover-ups" after many types of surgery, you'd think Johnson&Johnson or 3M would have created something like this for sale. Shrug.

Richard felt a little fluish today. He didn't have a temp at 2 pm, but a very slight temp at about 5 (99.2). He spent the day talking on the phone, lying pronish on the borrowed barcolounger (thanks Jeff), and eating soup, crackers and cheese, and even a little ice cream (shhhh). I still have to figure out the best way to serve a "low microbial diet." More on that tomorrow.

Please feel free to leave comments. You don't need a Blogger account to do so.

More things underrated: Chicken noodle soup, and a cool shower after a hot day.

Day 2. One more day at The BMT Resort

After a decent first day, Richard spent most of Thursday night and Friday morning vomiting (sorry, I couldn't think of a better word here..."being sick" just doesn't cut it). The nurses pumped him full of more drugs to take away the nausea, and he slept most of the day. His snoring never sounded so good. They won't release him until he's eating, so we're logging day two at the Bone Marrow Transplant resort.

Richard's also still on a major hydration bag drip (with magnesium and potassium), something that's very important for flushing the kidneys after receiving high doses of chemo. He is still pretty loopy, and forgets that people have called and what the nurses have said (one more good reason to have someone there as much as possible). His blood pressure dropped even further today...it hit 88/52 at about 7 p.m. Our oncology group's on-call doctor was made aware of the drop, and they're watching it tonight.

The good news is that he started getting hungry around 6 pm, s0 he had chicken broth (oh the joy that is chicken broth after not eating!!), vanilla ice cream, and half of a roll. Nice.

I left the hospital at 10 pm and had to exit through Emergency. I had no idea that the emergency room is THE happening place in Sacramento. It was like a party or something, with people hanging outside, talking and smoking. Children were everywhere. Oh. And it was about 90 degrees outside! How is that possible at 10 pm??

Today's conclusions: Two of life's taken-for-granted niceties are normal body functions and air conditioning.

Day 1: Catheters, cytoxin and calories, oh my!!

Yay Richard. He successfully made it through today's poking, probing and chest cathetering (yes, I've made "catheter" into a verb). We went for coffee while awaiting "the call" that a hospital bed was available, and checked in about 11:30. Eventually we got settled into the bone marrow transplant ward, which is about a 6-bed unit with a room for family to hang out, cook, and even run on a treadmill. Right.

Richard donned a hospital gown, some really cool grey socks with non-skid soles, and a pair of jammie bottoms. He's been wanting new jammies, so we *scored* this trip.

We had a great view of another building, which actually came in handy later...we were bored at about 6 pm and began discussing whether or not a breeze was moving the tops of the trees across the street. By the way, it was about 105 degrees outside at the time and 62 degrees in our room.

Richard was poked three times for an IV. Ouch. He got a lot of drugs. Legally. Then got carted away to have a couple of incisions in the upper right hand side of his chest, where they inserted a very large catheter down an artery. Three tips hang out, available for doses of toxic chemo and other yummy stuff. (Think here what it would look like to have a corsage with three wilted stems and you have an idea of what it looks like. Great look with those jammies.) I snuck away and walked to Starbucks for lunch. Did I mention it was 105 degrees in Sacramento today? Hot. Seriously.

Richard returned to the room and began talking non-stop. I think he was feeling no pain. A visit by the doctor, dinner, calls to family, a visit by daughter Lisa, and finally a DVD of "Rainman" to fall asleep by. (Geez, Tom Cruise was about 12 in that film. And Dustin Hoffman is most definitely one of the best actors ever.) I noticed at dinner that the hospital had him on 2000 calories a day, and here I am trying to get him to gain weight! He was famished, which I was glad to hear, so he had several snacks of graham crackers and milk. Maybe that was comfort food?

So Richard should be released on Friday afternoon if all goes well. Then daily infusions of neupogen to stimulate stem cell growth. Richard's white cell count should go down for a while, so no public showings for a while. Just as well, with this heat.

Oh! Gracie is almost at the end of her cross-country journey (see link on the sidebar). Amazing!

Love to you all.

Buckle Up...

Okay, first posting! Buckle up..

This first post is lengthy, but it's *relatively* brief. We knew you probably didn't want all of the marvelous details. Think of this as a Reader's Digest version. And I suppose you have to be of a certain age to appreciate that reference. Feel free to skim! So...as a recap...

In May of 2005 Richard experienced an injury on the job, and we learned (after several tests and much pain and suffering on Richard's part) that he had multiple fractures in his spine. One disinterested Worker's Compensation doctor who evaluated his xrays told us in passing that the injuries to Richard's spine were just a result of "getting old." Richard was 52.

It took several more months to finally receive a diagnosis of osteoporosis. For a white man of his age, his results were 4 standard deviations from the mean. Finally, my statistics course proved helpful! This result meant that he had less than a 1% chance of having osteoporosis to the severe extent that he did. However, this still didn't send up major disease flags for our medical team. It wasn't until December 2005 that Richard's primary care physician put it all together and suspected Multiple Myeloma. Finally. By this time, Richard could barely walk, was disoriented, took 30 minutes to get out of bed...and one morning he couldn't even step down our front step without his legs buckling. He had a fractured pelvis, his bones weren't functioning properly, he had low red and white blood counts and many other things wrong. He had also lost three inches in height due to compressed discs (from the osteoporosis). Instead of 6 feet tall, he's now 5'8" and holding. (I rarely wear heels anymore, so this all works out okay...our height differential is about the same!)

Richard was officially diagnosed with Multiple Myeloma (MM) in January of 2006. MM is a cancer of plasma cells. Plasma cells are made in the bone marrow, and with MM these cells overproduce and impede normal bone functioning. The result is, well, disasterous.

Once diagnosed, Richard was put on a treatment of high dose Thalidomide (200mg/day) and Dex(20mg/4 days on/off), with good results. The International Myeloma Foundation was an amazing source of information and support in those early days. Things would have been so much harder without them and their wonderful staff and directors, including IMF chair Dr. Brian Durie.

Richard developed a drug rash from the Thalidomide after a couple of months, and had to switch to Velcade, along with occasional Dex. He also went in for monthly infusions of Arridea to help the bones function. He has not gotten good results (i.e., fewer plasma cells) from Velcade. So onward to a stem cell transplant. There is no cure yet for MM, but drug therapy and transplants can provide a few additional years of life.

The autologous stem cell transplant (i.e. he's donating his own stem cells) process will involve 1) having a port placed in his chest for chemo delivery; 2) harvesting peripheral stem cells; 3) taking a very high dose of the chemotherapy Melphalan; 4) receiving half of the harvested cells that have been cleaned up. The process takes several weeks. During the Melphalan/transplant phase, he will be in the transplant unit for three weeks at Sutter General Hospital, beginning about August 22.

He should be hospitalized for about 3 weeks, while his white cell count goes down to about zero and then slowly climbs up again. During hospitalization, he will be very susceptible to infection and thus cannot receive any flowers, fruits or vegetables and few (if any) non-family visitors. Cards and phone calls to the hospital room are welcome.

Okay, assuming some people are still reading this (thanks for bearing with us!), the first step in the transplant journey will happen Thursday, July 20, 2006. Richard will be admitted to the hospital overnight for insertion of a catheter in his chest, and a dose of Cytoxin. Friday he will be released, and visit the hospital infusion center each day for about 10 days to check the catheter and have a daily dose of Neupogen (stem cell accelerator). Yummm.

So that's all for now. We'll use this blog as a mini-diary of his progress, and you're welcome to follow along. Thank you all for your good wishes and support.

P.S. Our niece, Gracie Sorbello, is riding a unicycle (yes, that's right...the thingy with one wheel...and no handlebars...and did we mention shoeless??) across the United States this summer (2006) to benefit the Leukemia and Lymphoma Society. Go Gracie! Check out her journey here or click on the link in the sidebar on this page.


Consider donating to the IMF here. They have provided countless hours of phone support, publications, and direction to us and thousands of families like us.