Relapsed High Risk Myeloma – Update June 20 2013

Slept well last night, wore my plantar flexion boots all night and no leg cramps – YEA!

Woke to 31 degrees and new snow on Mt. McCaleb above Mackay, Idaho. Glad Jani put the porch flowers in the garage last night so they didn’t freeze.

Jani walked the dogs on the Mine Hill and saw the cowboy rider watching over the cows up there (left upper portion of photo – click twice to enlarge photo).

When Jani got home, she did the weed eating around the yard.

Then, she went golfing at the beautiful 9-hole River Park Golf Course here in Mackay with the boys next door. 

L to R: Jani, Griffin, Kobe, Shelby, and Jackson. 

While Jani was gone, I discovered several bills that I had not attended to – related to my health and health insurance. Around 4 May 2013, I quit writing appointments on my 2013 calendar. I guess, I thought, well, if I’m near the end of my life – why bother???

I need the information about medical appointments for my health insurance travel and lodging benefit. So, I sat for several hours and created my calendar from 4 May 2013 through today using my blog entries online. I found a couple of “DENIED” health insurance claims and wrote letter of appeal for them. I almost hate the insurance paperwork more than I hate having relapsed high risk myeloma! I’m still not finished and will have to work on it tomorrow AGAIN – UGH … I know, I’m whining, sorry – especially since overall, I have such SUPER health insurance coverage.

Drove my bills to the Post Office. I also mailed an ancient glass negative slide from my Gram’s Mt. Pleasant Utah things to the museum in Mt. Pleasant.

I folded a load of laundry and developed a spasm in my low back. Remembered that I had NOT taken my 10 mg of Dex due today and took it promptly which helped a lot.

About this time, Jani returned and helped the guy who mows my lawn and warmed my dinner (left-over steak and canned beets).

Another cold forecast for tonight at 36 degrees and 30 percent of chance of rain tomorrow…but, in Idaho, just wait 20 minutes and the weather changes.

Each evening, I have mule deer visits like tonight, 20 June 2013.

Dex, MRI, Pomalidomide Approval Sought For Relapse – February 28 2013

The 40 mg of Dex I had yesterday pretty much kept me awake all night, but I kept busy with watching television and doing computer work.

Went to Walmart (wore my N95 mask) before my MRI of the hip and pelvis appointment at 10:15 AM. I’m so used to wearing this mask, it doesn’t phase me when people stare.

At St. Luke’s Hospital Radiology, I discovered they had me come 1 hour early to fill out 3 pages of paperwork (fortunately, I had a written summary of all my previous tests with me, which helped in filling the form out), get my clothes changed with no metal, and be ready for the MRI Exam. The MRI Exam took 1 1/2 hours and technician Melissa was very good about explaining time frames to me. I was happy to have the ear plugs and ear muffs.  I must have fallen asleep in the MRI Scanner because it didn’t seem like 1 1/2 hours.

Had a call from the St. Luke’s Hospital MSTI (Mountain States Tumor Institute) Pharmacy and they are working hard to get me approved for the pomalidomide. I have to call Celgene and complete a Pomalidomide SURVEY – basically to assure I cannot get pregnant and will not share the medication with others and not donate blood since this medication is a derivative of thalidomide (known to cause severe birth defects). This SURVEY has to be filled out every 6 months. I called and talked to my Anthem Insurance Transplant Coordinator RN letting her know that they were requesting pomalidomide for me. Now, I just have to wait to hear about the decision. Pomalidomide (Pomalyst) costs $10,500 for a 21 day supply.

Drove home to Mackay on dry roads. Just as I arrived home at 3 PM, it began to snow.

The 40 mg of Dex has my face puffy with bright red cheeks. Don’t look at my weird hair….

Fell asleep on the sofa late afternoon and slept until 9 PM. Got up and went to bed and couldn’t sleep AGAIN…but, I stayed in bed all night without any technology to keep me awake.

Carfilzomib (Kyprolis) Authorization Completed – October 26 2012

I knew I posted a little early today – RN Peggy from St. Luke’s Hospital MSTI in Twin Falls just told me that my carfilzomib has my health insurance authorization and will be ready for me Tuesday 30 October 2012 and 31 October 2012. I will get it intravenously 2 days in a row! If my Revlimid really arrives Monday 29 Oct 2012 – I’ll start that for 21 days on 7 days off 30 October 2012 too.

Nothing to Update – 2nd Relapse Medication Insurance Authorization – October 26 2012

Have heard nothing about the Carfilzomib approval today, so I called St. Luke’s Hospital MSTI and had to leave a message for the nurse. I’ve decided to invest a LOT LESS angst in to this process – not good for me.

Curascript called this morning and said the Revlimid WOULD NOT be delivered today and I’ll get it Monday – again, chill Jude, chill~

Terrible night of leg cramps – nothing seems to help except stretching and walking around. I took a plain Tylenol 500 mg with some success. Also had a gripping gut ache for awhile.

Walked Kemmer on the Mine Hill 1.38 miles – cold at 34 degrees, but very little wind which was nice. I should have had a red bandana on Kemmer to show

Nothing is Going Easy – October 25 2012

I’ve had calls from St. Luke’s Hospital MSTI nurses, my insurance Case Manager, and Curascript – but, I still don’t have approval for the Carfilzomib. The Revlimid is scheduled to be delivered tomorrow – we’ll see~ And no news from the Mayo Clinic Scottsdale for the 2nd opinion yet either.

My 91 year old father was complaining of pain in his right leg below the arterial stents he had placed, so we called his doctor in Blackfoot, Idaho at Bingham Memorial Hospital. He ordered an ultrasound, so I drove my father the 90 miles to Blackfoot. After the scan we headed home through a HAIL storm on the desert of all things. Once we got into the Big Lost River Valley on Highway 93, it looked like we might go through a squall – but missed it.
My father’s doctor called and said all was okay with the scan for now, but may need some intervention in the future. We didn’t get home until after 6 PM – way past both my father’s and my bedtimes – HA.

Insurance Approval Delays and Walking – October 24 2012

Still do not have insurance approval for Carfilzomib and Revlimid. I called St. Luke’s in Twin Falls and they are still waiting on the approval. I called my insurance Case Manager (she is in Ohio) and had to leave a message. No one seems to realize I need these medicines sooner than later. I lost my patience a bit. Today was a hard day to forget I have relapsed x 2 high risk multiple myeloma.

So, I walked Kemmer 0.68 miles on the Mine Hill today – always calming for me. Our summer route was covered with snow and slick, so we walked the steeper Mine Hill road today beginning at 6,232 feet with a gain in elevation of 132 feet or the equivalent of a 11 story building to 6,364 feet. Cold at 37 degrees, but no wind and mostly blue skies.

My left foot and leg neuropathy continue to burn, but during the day when I’m active it isn’t too bad. However, during the night, it interferes with my sleep.

2nd ASCT – Day 90 – August 16 2012

Up at O’DARK THIRTY (4:15 am) getting ready for my trip to my chemo and doctor’s appointment at St. Luke’s MSTI in Twin Falls, Idaho…135 miles each way from Mackay, Idaho.

I have to make lists to remember everything that I need to accomplish before I leave…I attribute this to “chemo brain”. The lists work for me in the most part, but not nearly as well as Jani reminders…

Proper Health Care

I’d been feeling poorly and decided it was time to go to the doctor. I hated going to the doctor, the people in the waiting rooms were always sick. But I went anyway and after the receptionist had me sit in the waiting room for the customary 90 minutes, I was led into the examining room.

“How are you today?” asked my physician jovially.

“I feel sick. My head is stuffed up, I have a fever, and quite frankly, my stomach has been upset a lot as well.”  I replied.

“Great Gods!” he stormed. “Get out! You can’t come in here sick!”

“What?” I asked, shocked. “Why else would I come here if not sick and needing healing?”

“It’s my job to affirm the wellness of people in needless appointments. My nurse sends out appointment cards and healthy people take time off work and come in to assuage their fears of some possible medical catastrophe. It’s how I make my living!”  He snatched up a tissue and held it over his nose and mouth and then spoke again.  ”Mmmf mm mfmph!”

“What did you say?”

He removed the tissue. “Oh, sorry,” he apologized, “I said I don’t want to catch anything from you. Go away.”

“Wait a minute. What are people supposed to do when they’re sick?” I whined.

“Don’t you watch commercials? They have one for almost every malady known to man. Just match up an ad with your symptoms, call and speak with the nurse and I’ll write a prescription if it’s needed.”

“But all of the drugs have lists of side effects and risks of bodily harm much worse than the illness the drugs are devised for. No one in their right mind would use the stuff they advertise. Not without their doctor approving it.”

“That’s true,” he admitted. “But that’s still no excuse for coming in here and risking the lives of everyone in the building. You could be contagious you know.”

“Well, as long as I’m here, can you give me something to make me feel better?”

“I suppose so. Wait here while I call the surgeon.”


“Yes, for the amputation.”

“Good Lord. What am I suffering from?”

“A cold I’d suspect, given the complaint you presented. Perhaps a flu.”

“Then what need have I for a surgeon?”

“For payment of course. I’ll be needing an arm and a leg.”

“Perhaps I’m not as ill as I thought. Why don’t I just go home, take some aspirin and have my wife make me some chicken soup.” I said.

“That’s the ticket! Good thinking.”  He returned the tissue to his face and fanned the air with his hand. I thanked him and skulked to the door.

Two days later I got his bill in the mail and thanked my lucky stars I had health insurance. I was able to keep my appendages, but needed to pay $2,322,451.03 Sadly, my insurance refused to pay it on the basis of preexisting condition –because I was ill before my doctor submitted the billing.