Today is Rm 4-14.
It is also the one year anniversary of my diagnosis of myeloma given after the biopsy of my right clavicle confirmed this cancer among other, according to Manny (my orthopedist), far worse alternatives.
What have I experienced?
What have I learned?
Where to from here?
My experiences. Where to start? I have had very many tests – the worst of which were the bone marrow biopsy from my pelvis and the whole body MRI that took over 3-hours. Both are necessary for myeloma patients. The easiest I think is the whole body PET/CT scan where you get to rest or sleep for an hour before entering the machine.
I’ve had quite a number of the standard treatments for myeloma patients – bortezomib (Velcade), cyclophosphamide (Cytoxin), dexamethasone (Decagon), – combined these 3 add up to CyBorD – one of the common first line therapies for myeloma, zoledronic acid (Zometa), lenalidomide (Revlimid), and methylprednisolone (Medrol).
To combat nausea, I’ve used the prochlorperazine (Compazine), ginger capsules, crystallized candied ginger, and 180 mg simethicone (Ultra-strength Gas-X). To combat constipation, I’ve used prune juice, dried prunes, docusate sodium with sennosides (Senokot-S), polyethylene glycol 3350 (Miralax) and bisacodyl (Dulcolax). The things that worked most reliably over time was the 2-capsule dose in the evening of the 180 mg simethicone, and the best of all is the daily 160 mg capsule of magnesium citrate which has kept me normal for months now.
To combat peripheral neuropathy, I’ve tried oxycodone with acetaminophen, and hydrocodone with acetaminophen for pain when I reached Grade 3 – all these did was alleviate pain. The actual symptoms were relieved with amitriptaline (Elavil) that I continue use to take to keep it under control at a Grade 1. I also take biotin, vitamin B6, folic acid, and vitamin B12 as all of these are thought to help with neuropathy.
But all this is just the mechanics of cancer treatment and treating side effects.
Of course, I must mention the care of my hematologist-oncologist, Warren, my orthopedist Manny who made the original diagnosis, my chiropractor Neil who first sent me for other care, the staff at Lynn Cancer center who really are first rate, and the education I’ve received from organizations such as the International Myeloma Foundation, the Multiple Myeloma Research Foundation, and my local support group headed by Gail and Dawn.
What is most important in a fight of this magnitude, is love.
The love and support I receive from my wife, Kathleen, our children, Kristofor and Kirsten, many good friends, coworkers, and the healing ministry at the Chapel of St. Andrew especially Emily-Nell, Faye, Cheryl, and Lillian. I am convinced I would not be in the quite good condition I find myself in but for all these people. Thank you from the bottom of my heart!
Learnings. Stop or reduce therapy sooner when peripheral neuropathy rears its ugly head. Make sure you get second or third opinions as to what treatment is best for you – this is truly imperative! Understand that you will get grouchy under the anti-myeloma meds. Know that your loved ones are taking quite a lot from you and you can’t tell. Take advantage of all the healing help you can get – whatever alternative therapy it might be – I’ve used many. They all help, or at least since I’ve used so many I can’t say that any one particular alternate therapy in particular did not help. I am convinced, though that Spiritual Healing has definitely been a huge benefit. The solitary plasmacytoma I had in my clavicle was gone quite quickly thanks to healing prayer.
Where to from here? This has certainly been a journey. While I have not achieved complete remission, I am in a good stable state, where my numbers seem to be in good control on what amounts to a maintenance therapy. Hopefully, I can rid my self of the steroid and zoledronic acid in the near future. In the meantime, 2 new therapies have been approved by the FDA, and more are in active clinical studies. Many physicians think that myeloma is about to move from being incurable to a chronic condition. The International Myeloma Foundation has announced its Black Swan initiative to once and for all develop a cure! Things are moving very quickly in treating this cancer. So, if I had to get one, this is probably better than most.
Finally, I cannot understate the comfort I have received from prayer, especially during the worst of my peripheral neuropathy symptoms with the sharp pains that, at level 7, would attack as often as every 10 seconds. These had me reduced to tears on at least 2 occasions. My only comforts were the loving touch of Kathleen and my oft repeated prayer:
Thank you, Lord Jesus, for my healing.
Amen.
karl&myeloma 