Daughter Gale arrived on Friday night, glad to be back in the south, from a cold and snowy PA. Thankfully, she was able to come to our rescue and relieve her sister, Robbie, who had spent a week doing "everything duty". We feel so blessed that they, with families of their own, are willing and anxious to be here when we need them - almost at a moment's notice.
We have really become "nesters" in Bob's 6th floor hospital room. We've settled in as if we think we might stay - probably because I've declared that I can't take him home until his pain is under control. We aren't asking for pain free days, we know that isn't realistic, but we would like for the pain to be at a manageable level. And, to me, a manageable level means no late night ER runs!
After a couple of failed experiments, the new PMS (Pain Management Specialist) has listened to our "the only thing that seems to work is the steroids", and has prescribed the Medrol pack. He is taking 8 mg. of Exalgo (the expensive, insurance doesn't cover, drug) twice daily, 2 mg. of Zanaflex (muscle relaxer) at 4 hour intervals PRN, 4 mg. of Delaudid at 4 hour intervals PRN, and the real lifesaver - the Medrol pack.
These drugs are supposed to get him to Friday (can't do it sooner because he has to be off Plavix for 5 days), when the first Facet Joint injections will be made. He (PMS) is very optimistic that Bob will receive instant relief. I'm also working on trying to be optimistic.
The PMS looked at the new (just had it about two weeks) back brace and declared that it was all wrong! He sent me to Lowe's (!!!) to pick up a $14.99 support belt. Wouldn't it be great if there was one doctor to coordinate all this stuff - sorta' like a Project Manager on a job!
We were told today that his M-Spike has plateaued at 0.3, and probably will not go any lower without a Stem Cell Transplant. Without a SCT, he would have to be on Chemo forever. Cycle number 5, just completed, was his last Chemo treatment. When his pain is under control we'll head for Dallas to the Bone Marrow Transplant Center - possibly within a couple of weeks.
There are nerve wracking days ahead - days that we really need your continued prayers and support. Please pray that the procedure to control the pain is successful. We had almost decided against a SCT, but with Bob's M-Spike plateauting, that choice no longer belongs to us. Please pray that he will be a candidate.
And again, how very grateful we are for each and every day - especially those with little pain!!
Hi Sarah, I have an article on this pending at The Myeloma Beacon... But if you still have trouble with pain management. Ask to try Kadian (www.kadian.com). It is, by research, confirmed to be the best time released morphine based drug for pain management. It delivers consistently the morphine into the blood stream over 12 hours. (None of that UP and DOWN!) Once we switched to this drug (advised by a physician friend who had her own debilitating injury and her tireless research to find a better pain mgmt solution), Dave was able to stop taking break through pain meds and was emotionally lifted and able to work full time, sleep better, etc.
ReplyDeleteLori: Thanks! The trip to the Pain Management Clinic, on Friday, and the injection into the Facet Joints has done wonders.
ReplyDeleteHe is now taking 30 mg of MS-Contin every 8 hours, and only has to take 4 mg of Dilaudid around midnite, for the breakthrough pain. He also wears a Lidoderm patch, on his lower back. He's sleeping better, and able to get up and move around without the pain.
We have finally made it thru a weekend without the ER!!