Thursday, October 16, 2008

Making Friends With Multiple Myeloma

I ran into a colleague the other day at the local garden center. I was in search of lime, as I was preparing a new garden bed and the soil in our yard is highly acidic from all of the pine trees around.

This colleague approached me and asked me how I was doing. With a big smile, I said, "Great." We chatted for a few minutes, and then he said, "I'm going to say something awful. You look wonderful. You look better than you did a few years ago."

I replied, "That's not an awful thing to say. I am spending a great deal of time and energy taking care of myself, so it is wonderful that I look wonderful, and it is also a wonderful thing to say."

I understand what me meant, though. The fact that there was anemia in my body, and then cancer diagnosed from a condition in my blood and bone marrow, and then spinal collapse, and then chemotherapy -- all of this might not lead to someone looking wonderful.

But I am not just anyone. I have chosen my own path in healing, and in life. And in my healing journey, I am combining the physical and the spiritual -- using Western medicine and Eastern acupuncture, daily meditation and visualization, with careful attention to nutrition and exercise. I make sure to spend time every day in nature, to read inspirational literature, to listen to beautiful music, and to eat healthy organic food, to spend time with those I love, and doing those things that bring me joy.

Plus, I am not fighting what is inside me. It takes energy to fight, and I want all of my energy for healing. So I am in a place of full acceptance and embracing of what is. That is, I am living joyfully with what is.

The fact is that I have made friends with multiple myeloma, that I am grateful for all the gifts in my life, that I am taking very good care of myself -- and I feel wonderful.


Joyous Judy said...

Here is a question that I was sent recently from a reader who wishes to remain anonymous.

"I saw your post about going to Little Rock for all the kyphoplasties. I'm wondering if you can shed some light here.

My mom has MM and has a couple of new fractures in the thoracic region. She's had two kyphoplasties in the past year at T8 and T9. But the new fractures combined with osteoporosis have made her slump forward quite a bit, which could start affecting her lungs and heart and stomach. The neurosurgeon she met with yesterday is recommending putting a rod in the thoracic region to help stabilize it.

I'm wondering, with your fractures, did you also have rotation/slumping forward? Did anyone at Little Rock discuss having a rod put in versus doing all the kyphoplasties? Do you wear a brace? And can you tell me what alternative modality has been the most helpful (Feldenkrais or another)?

This more intensive surgery is a risk because the rods/pins may not hold in her bones due to the myeloma. Yet, it may be a risk to just do the kyphoplasties and not address the squishing of her torso, long term at least. I know the kyphoplasties would give her some degree of stabilization.

We will be getting a second opinion tomorrow, but I wanted to see if your docs had discussed this option and what they thought.


Joyous Judy said...

Thank you for the question, as I am eager to help others based on my experience.

My oncologist here at home did not offer suggestions as to how to help my back -- it has all been at my request. And in Arkansas, the doctors showed no interest AT ALL in my back. They were solely interested in convincing me to have a double bone marrow transplant (even with the 3-8% mortality rate from the chemo and procedure).

Because of shrinking 3" (mostly in the lumbar and thoracic spine), I have lost a lot of room for the internal organs, and my lowest rib is very close the iliac crest on my pelvis. When the kyphoplasty was done on the 8 lowest vertebrae, I did find that I am now standing up straighter and in less pain. I was told I would regain most/all of the height loss, and that didn't happen, but that wasn't why I elected to have the procedure. I was also told that they would do kyphoplasty on the other 7 vertebrae in the thoracic region at a later date, if I wanted.

I found the kyphoplasty enormously helpful in correcting the forward slump to my spine, since before the procedures I had lost the lumbar curve in my back completely, and
now I have it 'back'. I am considering having the other vertebrae treated, on the one hand, and I am considering not. I do have a forward curve in the upper spine that might be corrected, but I also am cautious about any surgery, even kyphoplasty, as minimally invasive as it is.

No one has said anything about a rod in my spine. I have a friend my age who for other reasons had a rod put into her spine, and a few years afterwards she fell. That fall messed up everything the rod was helping to do, and now she is in constant pain and walks very bent at the hips. In her case, I think having the rod has made things worse.

Personally, I am very cautious about surgery. And even more so about anything that impacts on the spine and spinal chord. Putting a rod in the spine seems to me a very invasive surgery, while kyphoplasty is very minimally invasive. For me, if the doctors thought a rod was necessary, I would want to know why it was so much better than kyophoplasty, especially with the MM and osteoporosis, and especially with how much more invasive the surgery itself is.

I do not wear a brace. I have not experienced much rotation of the spine due to the fractures, mostly the forward curve. The Feldenkrais therapy has been very helpful, although it is impossible to know how my healing would have gone without it. I drink 8 ounces of Goji juice daily (see for more information), and I know that has had much to do with my healing, energy level, and healthy digestion. It also helps greatly that I lie down flat for 1-2 hours in the afternoon, and frequently recline during the day.

Probably the most important modality is that I am taking good care of myself -- eating lots of organic fruits and vegetables, taking supplements, and walking in the mornings ~3 times per week.

I have noticed the effect of shrinking on my ability to breathe as deeply as I used to, so when I lie down in the afternoon, I spend the time meditating and doing deep breathing exercises.