Sunday, January 23, 2011

Finally, there's hope.......

Online and in all the MM information, it's touted that while Multiple Myeloma may be incurable it is treatable. What these sources don't always reveal is how extremely painful this disease can be. Each "victim" (because that's what cancer patients are) is different; some have little to no pain, and then some; like my sweet husband live with excruciating, uncontrollable pain. Pain that has no beginning and no end - pain that is constant, and almost debilitating. Pain that seems to taunt the patient, the doctors, and the medications, as if to say "I've gotten my hold on you, and I'm going nowhere."

Often, when it seems that the drugs have done their job and the pain has subsided, he moves or has to go to the restroom, and the spell is broken. The pain returns with a vengeance, everytime seemingly worse than the time before.

He lays in bed, almost writhing in pain, and daughter Robbie and I watch the clock as the minutes slowly tick by. He's had 45 mg. of Morphine and 6 mg. of Dilauded, and our nurse daughter Gale has told us that it will probably take 4 hours for the Morphine to begin to ease the pain. Finally, he begins to sleep but the restroom beckons. Walking has become an effort that causes unrelenting pain.

At about 2 a.m., he decides that he can no longer stand the pain, so we head for Hattiesburg and the ER. The ER doctor acts as if we're there for drugs (which we are!). Apparently, he's had little exposure to a MM patient and the unrelenting pain.  Lucky for us, we have a nurse that has worked on the Oncology floor and understands. Before daylight arrives, he's moved to the Oncology floor, and we decide that, this time, we're going nowhere until they get the pain under control. These weekend "field trips" to the ER are no fun.

2 mg of Delaudid is injected into his IV line every two hours to try and control his pain.

His Oncologist visits on Friday morning, and I question what Bob's future would be without the SCT. I'm told that he would have to continue Chemo, forever. The Oncologist still thinks that the Chemo (Velcade) is the reason for the pain, and he decides to stop the Velcade but continue the Dex - so that the MM won't get out-of-hand. There are more tests - MRI and bloodwork.

We ask for a referral to a Pain Management Specialist, and on Saturday afternoon late, he finally arrives. This doctor makes house calls and has been to a nearby town to fill a pain pump for a patient. He comes into the room and his greeting is "Why haven't I been called, sooner?" I explain that our oncologist has tried to work thru the process, and examine every possible avenue before calling him.

After extensive questioning about Bob's medical history and an examination of his back, he assures us that he can "fix this"!  He tells us that Bob's Genetic makeup is the reason the Morphine has not been successful, and the reason he's unable to tolerate the Fentanyl patches. He explains that he will put Bob on Exalgo (a very expensive drug, not currently covered by insurance) a new long acting, extended release of Dilaudid, along with Zanaflex (muscle relaxer), and Celebrex. He will also complete 3 injections, over an unspecified period, into the Lumbar Facet Joints. This procedure will kill the nerves, thereby eventually eliminating the problem.

The doctor tells us that the condition of his spine will prevent him from being able to play golf. This is a small sacrifice, if it enables a pain free future. Finally, a plan that sounds like it may work! Can we truly have nights without pain and discomfort, and trips to the ER? 

And finally, there's hope! 


  1. Sarah,

    I hope that this pain management specialist can help Bob with his pain. I have no pain threshold, so I can only imagine what your poor husband is going through. Keep up the fight! Kathy

  2. Kathy: We hope so, too! His pain has been unbearable.....