Friday, June 5, 2009

Transplant B, Day +9: A day for reflection... -and- BACK ON DILAUDID?!?!?!?

Hello there, folks.

First, the labs: WBC at 1.48, so tomorrow (hopefully) I won't be neutropenic. Platelets are at 23; we'll see if they hold tomorrow. It will be close. RBC fell (Hemoglobin at 9.9 today) but that may be a function of drinking more water . Kidney function is great. Liver function is finally starting to return to normal levels (2 of 3 metrics are normal, 1 is still high). Electrolytes are fine. CRP went up to 50, but I'm still feeling good (or was at the time) so we all think it is the impact of the Neupogen growth factor.

The only complaint I had other than tiredness was some persistent lower back pain, which I'd had a little of before so I know it's from the growth factor, which is raising hell in my bone marrow trying to get the system up and running. Like Fonzy smacking the jukebox. Poor jukebox.

They gave me a Tylenol, after they determined I wasn't running a fever, and this seemed to take some of the bite off the pain. Tylenol would normally be reserved to reduce my fever, since if I get a fever I'm pretty hosed without an immune system. We know from last time 'round that I'm going to have a fever at some point as my blood is being manufactured, so I want to be prepared for if. If I'm on the Tylenol for pain, we won't be able to determine if I'm running a fever from an infection, since Tylenol will reduce a fever by a couple of degrees. I want to know something is up before I hit 101 and have to rush to the ER.

Armed with that knowledge, we left the hospital. Fast-forward six hours, and I'm in agony. It feels like somebody has stuck two railroad spikes deep into the small of my back and is rotating them around. It's horrible.

With some reluctance, I popped some Hillbilly Heroin (Oxycontin) at around 9PM local. By 9:35, we're on the line with the hospital. This feels in some ways worse than when my back was broken. At least with that, I could find a position to lie in that didn't put pressure on the fracture. This is unremitting. Sitting, kneeling, standing, on my back, side, stomach...nothing makes a difference.

So on the advice of the attending physician, I took a 2mg Dilaudid along with a Tylenol. Currently in bed, hoping this horrible stuff kicks in soon. This SUCKS.

Normally, they will continue to administer Neupogen until there are two consecutive days above 2.0 on the WBC scale. Today mine was 1.48. If it's high enough tomorrow, they may bypass the shot...but if it's only 3-4, they will want to give me another shot. I may veto it on the basis of this pain.

Now...having said all this, I'm very, very, very fortunate.

In the wake of the American Cancer Society statistics on five-year survival for Myeloma (34%) and the strikingly higher success that BB has achieved here, I've thought a lot about why everybody doesn't come to do this. Certainly a lot of it is luck...if somebody shows up in the ER with a broken rib, and blood tests turn up Myeloma, whomever the on-staff hematologist / oncologist is will put the person on whatever protocol they feel like using. This is still a rare cancer. And the data from Total Therapy 3 (which has the truly impressive statistics for event-free survival, sustained remission, and *cure*, to use the magic word) is only a year or so old, in terms of its general publication (data had been collected for 3-4 years before). In part, the protocol here will be used more broadly as a natural result of the success here and the realization by the broader MM medical community that this is a highly effective treatment for a majority of newly-diagnosed patients.

Having said this...the Autologous Stem Cell Transplant is not a trivial procedure. As it turns out, this way of resetting the immune system isn't used unless the patient faces likely death without it. For cases of immune system disorders -- even serious ones like Lupus -- they won't do this. And I've now had this done twice.

Total Therapy has a 5% treatment-related mortality rate. Many people who contract this disease are quite old -- it is a disease of the elderly, after all -- and many may not be in great health. I'm sure those factors contribute to the TRM figure. By the way, when I first wrote of the 7th floor, I mentioned cadaverous patients looking like they're waiting for death. The man I saw two months ago, I saw again yesterday. He's 89. When I first saw him, he was bent over almost 90 degrees, leaning on a walker. Now, he walks tall and erect, on his own power, occasionally leaning on a cane. He's on the mend.

But he's survived a difficult that is used sparingly and only if death is a likelihood without it. I've had this done twice, and I've made it through very well, tonight's pain notwithstanding.

Not everyone is so lucky.

Today, a woman in her 50s received a stem cell transplant. She probably checked into her room 30 minutes before Jill and I arrived at the 7th floor today. Just like with me, they probably pre-medicated her with Benadryl and then hung the bag of her stem cells. Just like with me, the APN stayed in her room after verifying the right cells were being given. This was probably right as Jill and I, now signed in, sat down in the waiting room, thirty feet down the hall.

Loud beeping started. Nurses scrambled. One shouted "call the code!" Carts were pushed rapidly down the hallway. Everybody swarmed into action. Jill saw a young woman in the hallway, talking with two nurses.

Ten minutes later the woman was dead.

It was a horrible day. I didn't quite feel guilty for making it through better than this woman, but I did feel tremendous sorrow (as did Jill, who offered to stay with the woman's 22-year old daughter). It seems the family was here from Jamaica. The woman's husband returned this morning to Jamaica because their daughter, who had just graduated from college, arrived today to relieve him.

How horrible.

So with every wave of pain that pulses through me, I am thankful. Thankful that I was diagnosed early, thankful that I had time to research where to have this done, thankful for the work of BB and his team for the last 20 years that has put them in a place to believe they are curing a large portion of patients...and thankful to God and science that I've made it through as well as I have.

There's an Italian restaurant here that has a dish named after my doctor. We went there a few weeks ago -- it's pretty tasty -- and sat beneath a large framed newspaper article about BB. The author of the piece, which was written about 10 years ago, said that patients who are diagnosed with Multiple Myeloma are "in the grip of a devil." It's a terrible disease...necessitating a terrible treatment...and I'm lucky to survive both.

Be well everyone.


  1. Hang in there Nick. You're possitive attitude, even in the face of so much pain, will get you through.

    Be well.

  2. One never has to look hard to find a little
    perspective on their situation. It's all relative. On a less serious note, Oxycontin
    AND Dilaudid. WOW. You're a "rocket man."
    That musta been pretty groovy.

  3. So happy to read things are progressing and what a joy to read a terrific piece of writing. Keep it up on both fronts!

  4. I love your attitude, Nick. You be well, too!