Monday, April 26, 2010

Multiple Myeloma Mayhem and Madness

Sorry for not blogging for the past several months but first of all my computer was giving me fits, then I was having back problems and couldn't sit at the computer for more than 5 minutes at a time. Well, Christmas brought me a beautiful new computer but so much was going on with Frank that I spent any time I could at the computer doing research of alternative/complementary treatments for his multiple myeloma (mm) cancer. He had been taking Curcumin and other natural anti-cancer substances for many months, including H2O2 and because his is the most aggressive form of mm [chromosome 13q deletion], I had tried many substances. When he complained, I would tell him that the handfuls of pills he was taking were the salad and vegetables he should be eating but doesn't like:)

Back in October Frank was helping to clean up the millions of fallen leaves in our yard and was lifting a huge garbage bag full into his truck to haul off when suddenly he felt a "pop" and pain in his back. He felt he had pulled a muscle because though he was stiff and sore, the pain seemed to move around, mostly in the soft tissues. Just when it started to feel better, he lifted a heavy suitcase before a trip and the pain returned in a different location. This type of thing happened regularly each time he thought things were beginning to improve. After a couple of months, when the pain had worsened, he went to his family doctor who prescribed physical therapy. I also had hurt my back again late in September and was suffering from sciatica [which I wouldn't wish on an enemy!]. We both started going to p.t. and eventually, after both of us spent Christmas pretty much incapacitated, I was improving, but his pain got worse instead of better. When he told his oncologist about the pain, he of course wanted to immediately do an MRI of Frank's spine. I had read that the contrast agent used, gadolinium, caused his type of cancer to proliferate and the malignant protein in his blood to spike. We told the doctor that we would agree to the MRI if it could be done without contrast, which he agreed to. It was done but the results were inconclusive, so a CT scan and x-rays were done which revealed compression fractures in his lower thoracic and lumbar spine. The doctor wanted a clear view of just what was going on so we finally agreed to the MRI with contrast. This showed lytic lesions of his entire lumbar spine with the biggest tumor nearly an inch in diameter. All of these were causing weakening and collapsing of the vertebrae and severe pain.

Up until this point, he had been considered being in the smoldering (or sleeping)myeloma stage. There are 4 symptoms which would indicate his cancer had become active and together have the anacronym CRAB. C stands for elevated calcium, R is for renal (kidney) failure, A is for anemia (low red blood cells) and B is for bone lesions. Up until then those had not been present and oncologists don't treat the disease because it doesn't improve the outcoome or extend life. However, with the invasion of the cancer from the bone marrow into the bones, he officially is in the active stage, which necessitates strong measures.

He was going to start Lenolidamide, an oral chemotherapy agent, which would be really convenient and he could take it at home, but decided to opt out of that when we found it would cost us several thousand dollars a month out of pocket:( He took two weeks of IV chemo (Velcade) (twice a week) and we would come home in between doses [300 miles rt each time]. It only took a few minutes to administer and he never felt nauseated from it which is a blessing, but it caused extreme tiredness and severe pain in his back and legs. After one cycle the doctor decided he needed radiation in his back to help alleviate pain and knock down the tumors in his spine so he had two weeks of that (five days a week) directed at his entire lumbar spine, administered first in front and then in back.

We stayed with his brother Bud, in Gilbert during the week and went home on weekends. During the second week he was hospitalized for 24 hours with sudden upper chest pain. After an E.K.G., scans, x-rays, enzyme tests, etc. it was determined it was not his heart, a blood clot in his lung, or pneumonia but probably a tear or pulled muscle, the results of severe coughing, as he had picked up an infection when some of our kids had come home to see him a month before. He had to make up the day of missed radiation so that took him into the third week. Then he started another cycle of chemo. . .

He always gets a CBC (complete blood count to check his immune system) the day before the chemo and after one dose of this second cycle, his white count (infection fighters) has been too low and puts him at great danger of infection without an immune system to fight it so they didn't give him any chemo at all last week. At least it saved us a couple of trips to the Valley! We'll see how things go this week. We have to go down there to obtain and hand carry an RX for a narcotic pain reliever for him, the only thing that makes life bearable.They can't fax or phone it to the pharmacy, state law. He also takes a mega-dose of Decadron (a potent steroid)once a week which hopefully helps wipe out some of the cancer cells, increases his appetite [he has lost more than 40 pounds the last few months] but also wrecks havoc with his immune system along with the chemo and radiation.

Anyway, things have been interesting here to say the least. He has a good attitude but wonders what the Lord wants him to learn from all this. We are flying to Salt Lake City in May for Kristal's husband's graduation (BS in Architecture) from the U of U. Just don't have the time with chemo [if he can take it] to make a two day trip each way and it would be too hard for him to drive the whole way in a day so we have made plane reservations. I'll certainly have to give him lots of immune boosters before the flight.

Lance and Wendy and families came home this weekend to take care of things that needed to be done: rake mountains of leaves in my flower beds, clean up chips at the wood pile, plow our garden spot, mow our huge lawn, haul off broken tree branches & bags and bags of leaves, etc., etc. Our good neighbor, Dustin, was in on the project all the way. His wife brings us tasty meals regularly, which helps perk up his appetite. Its been wonderful--so appreciated. I had been working outside when I could but there was so much to do it seemed overwhelming.

5 comments:

Aunt Tiff said...

You both have been in our prayers! Sure do LOVE the Greer Family!!

bdrain said...

There isn't a pray given at our house that Frank isn't mentioned.

KaNdRa and JaReD said...

I think it's been a little longer than "a few months" but I'll give you a break this time. We look forward to seeing you next week in SLC.

Tell dad to plug his damn nose and eat those vegetables.

Becky and the Boys said...

So sorry for all your trials. We're thinking of you!

Lindabee said...

This is a great trial and growing time for you folks. we wish you the best and think of you often