Relapsed High-Risk Myeloma - Update - May 23 2013

Woke in the night with a TERRIBLE, NO-GOOD left calf cramp - YELPING LOUDLY enough for Jani to hear me. I had my dorsiflexion boot on the wrong leg - although, I have 2 boots, so should have had both on. Continue to sleep better, but my left calf feels like it is at least 1 year shorter. I finished Day 3 of the Z-Pack antibiotic for my sinus infection today.

Don and Charlotte McKelvey dropped off two petunia plants for my front porch - so pretty and sweet of them to think of me!

Drove to town (4 blocks) and got the mail at the Post Office. Delivered it to Paco (my 92 year old father) and had a nice visit with him and his helper, Gretchen Lawrence, at the kitchen table. On the way home, visited with a friend, Ellis Reay, as he headed from the grocery to the Post Office.

Stopped at the Mine Hill Grill (photo below from Feb 1 2011) located on the corner of Main Street and Highway 93 in Mackay, Idaho.

and picked up a take home hamburger made by cook, Vesta Rogers.

Jani headed to the Idaho Falls Airport (100 miles each way) to pick up her partner, Robbyn who came from Colorado for a couple of days. Crossing the desert with the Twin Buttes in the distance - VERY WINDY with jet stream close to the ground.

Click on the photo of Robbyn's plane twice and you can see it at the end of the red arrow.

Jani and Robbyn stopped at Paco's house to say HELLO before they came to my house. I'm so lucky to have so many who want to visit me.

Then, Robbyn, Jani, and the dogs took a walk on the Mine Hill. It was a little chilly and windy up there. Mt. McCaleb and Lower Cedar Creek pictured below.

Robbyn with 12-year old Kady (white mouth), Zoe (behind her) and my Kemmer in front. I wasn't there as I was one-with-my-sofa with my 35 platelets...darn it!

Our Mom sent Jani a penny on the BLM Road South above the Cattle Guard this afternoon.

This is a grazing year for cattle on the Mine Hill. Must be ample to eat, because they are producing LOTS of cow patties!

A rain squall over Lower Cedar Creek on the opposite of the valley from the Mine Hill.

 Mule deer in the Halverson and Palmer fields this evening, May 23 2013.

I wrote an email to Clay Smith, MD at the University of Colorado to let him know that I was still alive and explained my current treatment plan at St. Luke's Hospital, Twin Falls, Idaho.

That Happy Worn Out Look - January 17 2013

My worn out, anemic, steroid look with my wicky hair that won't do anything but this. My hair is not falling out - it is just WILD. Despite "the look" I was able to get most of the house vacuumed today and run errands around town (in a N-95 mask). No nadir (nap) today either. My neighbor, Lew Pence, finished shoveling my driveway snow today - at last I think it was Lew or one of his brothers. They have been ice fishing EVERYDAY.

I also have a small lesion growing on the end of the forehead laceration I got last July 2012. It is firm and non-painful. I noticed it about 3 weeks ago.

You might remember the laceration I received when I fell walking on the Mine Hill 20 July 2012.

I had to wait around at home for the FedEx delivery of my next Revlimid Cycle 4 to begin 30 Jan 2013. The delivery finally came around 12:30 PM and then I was out and about on my errands.

2nd ASCT - Day 137 - October 2 2012

Checked in on my father early and to put his compression stockings on...if it weren't so TRUE, it would be FUNNY - getting those stockings on him was a nightmare. I sat on the kitchen floor for more than 15 minutes pulling and struggling to get them on. I do NOT have the strength to stretch them sideways to get them on his foot and over his heel. Grunting, groining, and huffing, I finally got them on him. I'm going to have to find a better solution of this daily task!

Drove to St. Luke's Hospital MSTI in Twin Falls for my 10:20 AM appointment. Saw a whole herd of antelope just of the road before the Craters of the Moon National Park.  Technician Anita drew my blood on the first poke - she is very good and uses a small butterfly needle and a light tourniquet. I didn't have to wait long and was taken back to the Infusion Area with RN Brittany. 

My lab values are good;  my white blood cells are low, but okay at 3.7 (norms 4.5-11); my hemoglobin 12.9 (norms 12-15); and platelets 202 (norms 140-440). 

I start Zolinza (vorninstat 400 mg daily for 14 days today, so I can expect that my lab values will be decreasing for next week's blood draw on 9 Oct 2012.

My creatinine (kidney function test) was high at 1.12 (norms 0.52-1.04) which I do NOT like. However my BUN (the other kidney function test) was norm at 12 (norms 7-17). I was careful to arrive at my appointment today hydrated, drinking 1,500 ml before I arrived which necessitated a stop in Shoshone to use the bathroom on the way. In fact, I've been staying hydrated all week.

26 Sept 2012     2,750 ml
27 Sept 2012     3,250 ml
28 Sept 2012     2,500 ml
29 Sept 2012     3,000 ml
30 Sept 2012     3,500 ml
1   Oct  2012       3,250 ml
2   Oct 2012        4,000 ml

My LDH was high at 710 (norm 313-618). My LDH last month before I started Zolinza was 661. I'm not sure how to interpret the LDH, but I don't think higher is good~

My AST (liver function) was slightly high at 37 (norms 14-36), so, I'll be watching that too.

They drew my SPEP (includes the M-Spike); immunoglobulins, Beta-2 Microglobins and sent a urine for protein today. These tests need to be sent to Boise and will not have the results for several days. It is hard to wait for the M-Spike results, but wait I must.

I took this photo with my iPad to show how much the steroids are puffing my face (Cushing facies) and giving me facial hair (hirsutism) - Who needs hair on their head when they can have a beard???

And is my practice, I wear my hiking boots to EVERY appointment - after all, this IS AN ADVENTURE~ 
While I waited, they gave me lunch (a turkey sandwich). RN Brittany gave me my subcutaneous Velcade and I was on my way home before noon for the 2 1/2 hour drive home to Mackay.

Checked on my father when I got home and the compression stockings were too tight on the left leg at the knee, so with great effort, took them off. Evidently, I pulled them up too tightly when I put them on this morning. With his arterial stents, this is NOT good and I will try to do better tomorrow.

Came home for a wonderul 1 1/2 hour nadir on the sofa. Then, I gave Kemmer a ride on JackRed (4Wheeler) to the grocery store so I could pick up a few items.

2nd ASCT - Day 111 - September 6 2012

Zolinza effects so far. Last night I almost threw up around 9 PM, but did not. I was careful to sleep more upright. Interestingly, I was not nauseated, I just had esophageal reflux suddenly which is very unusual for me. 


I also noticed that I had my post-shingles pain in my upper back area on the right side. I haven't noticed this for at least a month, so I hope I'm not going to break out in the shingles again. I take my Famciclovir 500 mg every 8 hours using an iPhone app called Pillboxie. I highly recommend Pillboxie to anyone who has to remember to take meds and has an iPhone.










Slept better last night, took a Pepcid in the night, and woke without an appetite, but not nauseated. I think this is good since the dexamethasone 10 mg has had me ravenous and eating every thing in site. I think I gained 8 pounds over a 2 week period, but that may not be true since my clothes seem to fit the same.

I also have increased burning neuropathy which I have experienced as a burning sensation on the bottom of my left foot, radiating up the back of my left leg to my thigh area. I'm sure this  is a Velcade issue, even though I am getting it subcutaneously.

I have good energy today. However, my lack of appetite continues - I eat anyway! Ha

The air quality improved here in Mackay Idaho overnight from the forest fires and Kemmer and I walked the Mine Hill 1.50 miles with ease.

Kemmer looks heavy below, but it's all HAIR~

We went to my niece, Lindsay's Memorial for a visit. Miss you Linds.

2nd ASCT - Day 108 - September 4 2012

Drove to St. Luke's Hospital MSTI in Twin Falls this morning. Got there early and stopped at Sportman's Warehouse which is located just on the edge of the canyon with a great view of the Twin Falls Bridge that I have to cross over to get to Twin Falls.

Twin Falls Perrine Bridge over the Snake River today September 4 2012. Double click to full-size.

 RN Kenadi, me and my oncologist, Dr. Padavanija. September 4 2012

Had a good visit with Dr. Padavanija. She thinks I should continue Augmentin (antibiotic for one more week to make sure the root canal is totally bacteria free). I was scheduled to get Aredia (bone building medication) this week, but Dr. Padavanija thinks I should forego Aredia for this entire month in light of the root canal. So, I  only got subcutaneous Velcade today in my left arm. I was in and out of the Infusion Area in just minutes since I didn't get the 3 hour Aredia intravenous drip. I took my Zolinza 400 mg (four 100mg capsules) while I waited for the Velcade along with 10 mg of dex. I ate a peanut butter and jelly sandwich.

My blood values are good this afternoon. WBC normal at 4.7 (norms 4.5-11); hemoglobin 13.5 (norms12-15); and platelets 258 (norms140-440). They also drew a LDH and Beta2 Microglobuins along with my SPEP (includes the M-Spike) and free lights. I also gave them a urine sample.  I won't get those results until the end of the week via fax or during my Friday Velcade administration.

My comprehensive metabolic panel has a slightly abnormally high Creatinine which is NOT good - a measure of kidney function. I've been taking a lot of Advil for the root canal and I'm going to stop that now. However, my BUN is normal (another kidney function measure) - so, I'm probably alright.

Stopped at Taco Bell - yum.

Back home in Mackay, Idaho located in the smokey Big Lost River Valley by 2:45 PM. The Halstead Fire has grown to 135,779 acres and only 7 percent contained. Our air is just THICK with fire smoke - so, no walk for Kemmer and I. Can't even see the Mine Hill and it is less than 1 mile away. The sun was a bright orange, but not in my photo.

2nd ASCT - Day 95 - August 21 2012

Didn't sleep last night due to the dex, but I seem to have plenty of energy today. I walked Kemmer 1.70 miles on the Mine Hill (forgot my camera card in the computer, so no photo). The burning neuropathy in my left foot and some now in my right foot also didn't help the sleep situation. The dex has me absolutely "STARVING HUNGRY" ALL THE TIME! I could eat a whole loaf of bread if I let myself...I did LET MYSELF eat a piece of toast and apricot jelly at 2:30 AM~

Ran errands around town and helped my father with scanning some documents. Picked apricots at my father's neighbor's house. I'm going to make an apricot crisp and a couple jars of jelly.

Jonah (white 1999 Honda Passport) went to Tim Reimann for a new gear shifting mechanism and it works perfectly...now, I'll be able to get around and BACK HOME on any dirt road around!

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From Reimann's Kemmer and I walked home via the school and the LDS Church for a distance of 1.15 miles - not exactly a direct route. 

Took a bunch of school supplies to the school and watched a replacement sewer line go in from the LDS Church to the street.

That's the Elementary School across from the LDS Church (below) and Kemmer ran over to the kids at recess...VERY BAD OF KEMMER...VERY BAD of me for not noticing until several children who are afraid of dogs ALERTED ME KNOW. THANKFULLY, Kemmer wouldn't hurt or jump on any of them.

Walking home, I got a photo of the back of my house from Fullmer Way.

Then, stopped to visit my neighbors and Randy said he is sure he saw a very large coyote or a wolf come out of the willows to the right of my house in the above photo this morning at 5:15 AM. Kemmer was barking like crazy at the same time...so, I'm sure it was something.

2nd ASCT - Day 94 - August 20 2012

Left Mackay this morning at 6:30 AM for St. Luke's MSTI in Twin Falls for the last of my 1st Cycle of chemotherapy of Velcade and Dex (Days 1, 4, 8, and 11). The drive seemed easier this morning and I enjoyed the vistas. Arrived in time for my 9 AM appointment.
Had to wait for my CBC blood test and the Velcade 1.7 mg and was at St. Luke's MSTI for 1 hour 15 minutes.

My CBC was great again and all normal. White blood cell count at 5.9; hemoglobin 13.2; and platelets 264.

Went to Walmart and Taco Bell on my way home~had to wait for a pilot car by the Craters of the Moon National Park where they are resurfacing Highway 26/20/93.

The air quality in the Big Lost River is improved some after a little rainfall last night, but still clouded with forest fire smoke. Highway 93 north at Darlington, Idaho below. 

One reason for the improved Mackay Idaho air quality is that the wind is blowing from the south toward the fire north of Mackay above Stanley, Idaho. Note the US Flag at the Mackay Post Office this afternoon (below).

Took Kemmer on JackRed and went up on the bar area beneath Mt. McCaleb this afternoon. Kemmer LOVES JackRed and never wants to get off!

 Click and double click to enlarge photos.

Picked my Custer County Fair award winning apricots this afternoon ... all 2 dozen of them.... photo below...Remember these little trees were just planted April of 2011.