Tuesday, June 26, 2012

I'm sad to report that Richard lost his battle with multiple myeloma on December 15, 2011. He died almost exactly six years from when our doctor told him he suspected MM. He tried many therapies, but after a while they all started to fail him. Toward the end he was receiving blood products every day or two. We spent most days at the infusion center. The end came fairly quickly. He had some kind of infection but could not fight it off.  Although he was declining rapidly at the end, I was still surprised that he was gone. I am still surprised. One day he was here and the next he was not. He was such a good, kind man. The world has lost a gentle man.

I wish all of you fighting against MM a good journey. Stay vigilant, but more importantly carpe diem.


Sunday, December 10, 2006

Day 115: What a long, strange year it's been

Weight: 151
IgG: 1470 [9171 at diagnosis in January 2006]
M-spike: .9 [7.3 at diagnosis]
B2 Microglobulins: 2.53 [6.7 at diagnosis]

You know it's been too long since your last post when it takes five minutes to figure out what "Day" it is. I think it's been 115 days since Richard's August 17 transplant.

Richard is doing pretty well, overall. Here he is after stringing the Christmas tree lights. The popeye biceps are unintentional. Seriously.

Other indications that he's feeling and looking better:

-- He has hair. And, yes, sometimes it's little things like hair that make us feel normal.
-- His weight is pretty decent. He now weighs about 151. Not bad. It's up from a low of 138 in the hospital.
-- He's getting fiestier (fiesta-ier?). This is good and bad news. The good news is it means he's feeling better; the bad news is I'm not getting my way as often. But fiesty is good.
-- His blood counts continue to look good, i.e. his red and white counts are just a smidgen below normal.

Some recent news, however, was a bit discouraging. We had hoped the stem cell transplant would have produced a complete remission (no myeloma cells). However, we learned last week that Richard is in partial remission. His IgG level is on the upper end of normal but myeloma cells remain, evidenced by monoclonal protein levels (myeloma cells produce monoclonal protein). Richard's "M-spike" (measurement of the monoclonal protein) is now .5; full remission would be .0. His Lambda light chain level (don't they sound innocent?) is high (430), but lower than at diagnosis (2030).

So now we have several options: have a second stem cell transplant in early January; take a wait and see approach by monitoring his IgG and M-spike levels over the next month or two to see if the levels drop more or start to rise; start a new round of chemo with different drugs (since the ones he used before were either moderately unsuccessful or produced an allergic reaction); or some combination of the three. After a phone consultation with Dr. Durie of the IMF, we've opted to have tests over the next month or two to monitor any change.

So while we wait and see, life keeps us twirling round and round: we anxiously anticipate the birth of our first grandson in April; Richard participates in a writing class through Sutter Cancer Center; and I mourn the loss of my mother.

I think we're definitely ready to give 2007 a try.

Sunday, October 01, 2006

Day 44: Guitars, cowbells and bulbs

Richard update: sternum pain from possible fracture and all-over, maddening itchiness are still issues. But many good things spill into our days...

Richard's sister gave him one of her guitars last week. Thanks, Liz! So now Richard can learn how to play (um...thanks Liz..). Doesn't he already look like a folk singer? Well, without the black boxes around his ears.

Daughter Alissa, friend Lisa, neighbors Bill and Andrea, and their friends (and yours truly) participated in the Cowtown Marathon/Half-Marathon/5K walk-run today, along with 2800 other participants. The day started with a ringing alarm clock at 6:30 a.m. Richard and I looked at each other bleary-eyed and said, "Whose idea WAS this anyway?"

Alissa, Lisa and I walked the 5K. It was my first "race" (yes, racing the leaves down the street at my pace...). Richard walked to coffee and waited for our return. By the time he walked to the park with us, walked to coffee and back, he probably logged as many miles as we did.

We survived the day, and enjoyed Richard's parents' company later in the afternoon. They came bearing gifts of planted bulbs.

Ah, fall. My favorite time of year.

Friday, September 29, 2006

Day 42: Pruning pines and plasma

IgG: 1591 WBC: 4.6 Platelets: 404 Hemoglobin: 12.3 Red BC: 3.8

Richard's IgG level is just barely in the normal range for the first time. The goal of the stem cell transplant was to achieve normal plasma cell counts. The normal range is 700-1600, and Richard's count is 1591. We were hoping for a level of about 1000, but we'll take this.

The doctors will check the level again in about a month, with a more complete battery of tests including another bone marrow biopsy (which is painful, contrary to what the oncologist led us to believe the first time it was done in January). This time drugs will be Richard's friend during the in-office procedure.

Pruning plasma cells is not all that Richard has been up to. He also has been slowly pruning overgrown branches in the back yard. To make up for yesterday's sleeping picture, here is Yard Guy! Ever careful to guard eyes and lungs! Dragging cut limbs to the curb in single trips! Sorta.

We saw The Illusionist this week. Decent movie. We also saw The Benchwarmers on DVD tonight. Sophomoric movie with a message (a Sandler-produced film...enough said).

Thursday, September 28, 2006

Day 41: Dem Bones...

Richard continues to get a little stronger each day. Today he had blood drawn, a visit with the doctor, and a 3-hour arredia infusion (to ensure continued normal bone functioning). He deserves the sleep he's getting in the picture here. [The flash went off and he *still* didn't wake up.]

Richard's bones continue to be a theme in our life. Because he has severe osteoporosis due to the multiple myeloma, his bones are easily fractured and broken. Collapsed and fractured vertabrae are what first alerted us to a problem in May of 2005; over the next several months he fractured his pelvis and ribs. Last Sunday, ten minutes after I left for a work retreat, Richard was pressing down on something and he felt a pain in his chest, and heard a crack. We think his sternum is fractured. He had an x-ray today, and we will get the results soon. However, there's really nothing to do except to let it heal on its own.

Richard is also still suffering from an intense rash. The doctor gave him a pill to take, and that seems to help a little, but the constant itching is nerve-wracking. I rub lotion onto his back to relieve the itch. Maybe this is just a sneaky way to get a backrub?

Thanks for all your comments and encouragement. Cards and calls are always welcome.

Special hugs to good friends Kathy, Lisa and M'Liss, and a too-far-away hug to Gaylenintexas. Thanks for being there.

Thursday, September 14, 2006

Day 27: Positive but rashy update

WBC: 4.67 (normal!)

Things are progressing nicely in Richardland.

Richard has been spending a little time in the garden. Here's a recent not-the-best-lighting picture. Can you tell we need to prune that bush behind him? Fall is a great time, but it also signals all sorts of fun activities like pruning!

Richard had a check-up yesterday. He's gained two pounds over the last week (cue angels singing Hallelujah), and his blood pressure, pulse, heart rate and blood oxygen levels are all good. Also, his white blood count is finally in the normal range for the first time since June. Red blood counts remain a little low (3.84), but not terribly so.

The doc informed us that less than 5% of patients develop a particular strain of pneumonia after transplants. He wants Richard to avoid this nasty predicament, so he prescribed sulfameth/trimethoprim (800mg) two days a week for two months. As soon as Richard's nausea subsides, he'll start taking it.

Richard has developed a rash, and it's especially visible on his forehead. It makes me itch just looking at him. The doc says the rash is not uncommon, and that it will go away in time--go away with all the other lingering symptoms, such as nausea, low food tolerance, fatigue, light sore throat, a slight cough, and always feeling cold. While these symptoms are annoying, the rash makes him miserable. If he can't stand it longer than another day or two, the doc will put him on a steroid treatment. However, they're trying to avoid steroids if possible because of Richard's diabetes; steroids really elevate glucose levels.

Richard starts back soon on monthly infusions of arredia (the drug that makes his bones function properly). In two weeks he will have the arridea treatment and a check of his IgG level.

The IgG level, which indicates the number of plasma cells in the bone marrow, will tell us if the stem cell transplant worked. His IgG level going into the transplant was about 2500, after months of treatment (it was 9700 at diagnosis). Normal IgG levels are between 700 and 1600.

Let's see. What other updates are there. Well, Richard remains bald. The good news is that I no longer wonder who the stranger is in my house.

Well, that's just a whole lot of in-depth tidbits about Richard's body that you didn't bargain for. We share most of the details for other multiple myeloma folks who keep track of those types of details. Thanks to the rest of you for hanging in there with us!

Sunday, September 10, 2006

Day 23: Cowtown Marathon

No real news to report. Richard is still very tired, sleeping about 11 hours a night and resting a lot during the day. Yesterday he walked two blocks, and did some exercises the physical therapist had shown him.

The main reason for posting today is to invite people to join us in the Cowtown Marathon on Sunday, October 1, in Land Park. (Click on "Cowtown Marathon" for details.) It's a marathon, half-marathon, team relay or 5K (3.1 mile) walk. They anticipate about 2,000 participants.

Proceeds benefit the Leukemia and Lymphoma Society.

Alissa and I have signed up, and plan to do the 5K run/walk (trust me, we will be *walking*). We think it will take us about an hour to walk. Please join us if you can!