jm's Adventure with Multiple Myeloma: June 2012

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Click on photos to make them larger and clearer. New to the blog, the oldest or beginning entries are at the bottom and you read upwards to the most recent date or go to Labels and begin with Entry 1. Use the alpha Labels on right to find topics of most interest to you.







Friday, June 29, 2012

2nd ASCT - Day 42 - June 29 2012

POWER STEERING ! Jani and I drove to Arco, Idaho (30 miles) to Nathan's Honda and purchased a NEW 2012 Honda Rancher 4-wheeler with Power Steering and Independent Rear Suspension for me...can you say SPOILED??? Nathan is always good to do business with and I LOVE BUYING LOCALLY!
My new 4-wheeler's name is "JackRed TOO".


2nd ASCT - Day 42 - June 29 2012

LOVE LOVE my neighbors!
 Left to Right: Bowe, Bracken, Phil, Jani, Trevor, Pam, Judy, Gale, Shelby, Jackson, Jim, Griffin


Who's Watching My Blog - June 29 2012


Thursday, June 28, 2012

2nd ASCT - Day 41 - June 28 2012

My hair follicles opened up and tiny little hairs pushed up over night...fuzz all over my entire scalp...
But, I still look BALD which doesn't bother me at all...I NEVER have hat-hair!
Another good day for me with only minor gastritis all day. The neuropathy in my left foot and leg is pretty constant (from Velcade) and I have pain over where I had shingles on right upper back most of the time too which I take one half Percocet for every 8 hours. I have to be EXTREMELY careful to take my Famciclovir every 8 hours or the former shingles pain is AWFUL!!!!!!! These 2 pains, I'll just have to live with it seems as they don't seem to be changing over time.

Zoe decided that Kemmer was having too much fun without her and without too much coaxing jumped up on Jani's 4-wheeler and acted like she does this every day.

Wednesday, June 27, 2012

2nd ASCT - Day 40 - June 27 2012

I felt better today than any previous! Plus, the howling winds have stopped allowing me to get outside. Jani and I walked up the Taylor Canyon road today with our dogs. I made it 0.6 miles and Jani walked further. Here Kemmer (age 4) and I pose for our photo op.
 Jani with her dogs Kady (age 11) and Zoe (age 4 and a sister pup to Kemmer).

Jani leaving me behind. That's a historical aerial tramway support on the horizon that carried copper ore off the Mine Hill above Mackay, Idaho
We got my 4-wheeler named JackRed started today and Kemmer and I drove around for about 5 minutes, but at least we were out and about! Kemmer LOVES JackRed and jumps up by herself and then doesn't want to get off for fear that I might go WITHOUT her...Zoe, NOT SO MUCH.....that's Zoe off to the left below.
 That's Mt. McCaleb in the background.
Except for mild gastritis and a headache - today was a GOOD DAY! Jani topped it off by barbecuing steak!!!


Kemmer got into some cactus - easy to do as the hillsides are covered with it beneath the sage brush.

Jani got 2 cacti spines out of Kemmer's left front leg. Here is the biggest one that was almost totally  buried in her leg - OUCH! My Leatherman tool came to the rescue...

2nd ASCT - Day 40 - June 27 2012

I got my multiple myeloma blood tests today via FAX - would have had them sooner, but my FAX wasn't programmed correctly, so MSTI sent them, but I couldn't receive them. At any rate, I got my m-spike value and it is 0.1 (norm is 0) which is wonderful for me!
 My IgG is low at 379 which is excellent for me.

Tuesday, June 26, 2012

2nd ASCT - Day 39 - June 26 2012

Jani took me to Lost Rivers Medical Center in Arco, Idaho (30 miles) to have my weekly blood draw. Technician Diana got my blood on the first poke and we were quickly on our way.


All of my blood values are NORMAL!!!!!  Well, my white blood cell count is a tad low, but okay for me at 3.6 (norms 4-11.2). My hemoglobin is 12.9 (norms 12-16) and my platelets are normal 247 (norms 140-440). And most importantly, my creatinine which was too high last week is back in the normal range at 1.0 (norms 0.7-1.2) as is my phosphorus at 4.2 (norms 2.5 -4.5). Both the creatinine and phosphorus are indicators of kidney function. I also had abnormally high liver enzymes last  week and they are normal this week (ALT/SGOT is 51 (norms 9-52) and AST/SGOT is 33 (norms 14-46). So, it was a good week for MY BLOOD!
On our way home from Arco, we had to wait a short time on Highway 93 while a few cows were being moved. Idaho has open range laws and livestock always has the right away EVEN if they are unattended by humans.

I still do not have the results of my multiple myeloma blood tests (m-spike, immunoglobulins, free light chains) drawn last week on June 19 2012 at MSTI in Twin Falls, Idaho. I called and the nurse called me back late tonight indicating the results would be faxed to me - but, none yet.


The wind let up this evening and I was able to walk Kemmer around the block. We have been stuck inside due to high winds with dust and blowing for several days.

Saturday, June 23, 2012

2nd ASCT - Day 36 - June 23 2012

Feeling much better. My stomach is still raw, but the Prilosec and Zantac on a regular schedule twice a day seems to be helping. Jani and I went to the 67th Mackay Idaho Rodeo Parade this afternoon. I visited with lots of people and it was wonderful. To see all of the parade entries go to http://mackayidaho1.blogspot.com/
My little apricot trees planted 14 months ago have apricots on them now - so exciting!

Jani and I walked the dogs this afternoon. I wore a mask because it is windy here - but, warm.
 Jani playing frisbee with Zoe.

Friday, June 22, 2012

2nd ASCT - Day 34 - June 21 2012

Had a long bad day at black rock. My raw stomach was hurting me all day and I couldn't seem to do anything to make it better! Couldn't walk outside because it was too windy.


Had DISH satellite television installed today - much to Jani's DELIGHT! Here are the expert installers, Greg and Dave from Star West Satellite out of Idaho Falls.

Around 5 PM, I developed a HORRIBLE AWFUL PAIN in my back radiating through to my stomach. By 7:30 PM, I finally figured out that I had forgotten to take my Famciclovir (shingles protection) and the pain was right over where I had my original shingles outbreak before I was diagnosed with multiple myeloma. I cannot understate the pain from shingles even if you cannot see any skin lesions!!! Within 30 minutes of taking the Famiciclovir (late), the pain let up and I took Percocet and was able to sleep. Jani has now programmed my phone to alarm at all of my Famciclovir times (7 AM, 3 PM, and 11 PM)...this day was NOT FUN for either of us!

Wednesday, June 20, 2012

2nd ASCT - Day 33 - June 20 2012

Dr. Padavanija's office (MSTI in Twin Falls, Idaho) nurse called me this afternoon which was SO NICE. She wanted to share my lab values with me from yesterday. My elevated creatinine and phosphorus are both reflections of decreased kidney function, so they want me to have my blood retested next week. She will call Lost Rivers Hospital Laboratory in Arco, Idaho to order the tests for me. This means that I will only have to drive 30 miles each way. MSTI scheduling will call me for a follow-up appointment with Dr. Padavanija in 2 weeks from yesterday.


I walked with Kemmer on the Mine Hill 0.32 miles (elevation 6,212).
Jani and all 3 dogs went on without me and walked more than a mile.
The Mine Hill from the BLM Road just above the Cattle Guard on June 20 2012
Click on all photos to enlarge - double click to enlarge to original size.

Tuesday, June 19, 2012

2nd ASCT - Day 32 - June 19 2012

Jani drove me to Twin Falls, Idaho to the Magic Valley St. Luke's Hospital Mountain States Tumor Institute (MSTI) for my 1st appointment with my new oncologist, Phatama Padavanija, MD. Twin Falls is 135 miles from Mackay, but an easy drive with little traffic - IN FACT, Jani said we drove 72 miles before we even saw another car traveling in our direction! 


MSTI is a brand new facility having opened just about a year ago.

Dr. Phatama Padavanija, MD aka Dr. P spent a lot of time with Jani and I. UCH (University of Colorado Hospital) had sent her a pile of my records over an inch high. Dr. P seems very in tune with UCH's requests for my care and very willing to share the results with UCH and ME! MSTI does not have a system for sharing lab values with patients, but said they could FAX them to me. I had to have my labs drawn from my arm since I have no central line now, but the lab technician was EXCELLENT and had no trouble getting my blood on the FIRST POKE!


They drew my SPEP (with M-Spike), Immunoglobulins, and Free Light Chains - these tests must be sent to St. Luke's in Boise and I won't have the results for several days.


My CBC continues GREAT. My white blood cell count normal at 4.5 (norms at MSTI 4.5-11); platelets normal at 298 (MSTI norms 140-440); and hemoglobin normal at 13.2 (MSTI norms 12-15). So, I couldn't be happier about this!
My comprehensive metabolic panel had a couple of issues. My creatinine which has always been normal was high today at 1.13 (norms 0.52-1.04). This is a reflection of ones kidney function and mine may have been abnormal because I didn't drink enough today with all the traveling. My phosphorus was high at 6.0 (norms 2.5-4.5) and I don't know why except I ate several TUMS before the blood draw.

My liver enzyme tests were also too high - AST 41 (norms 14-36) and ALT 64 (norms 9-52). I'm going to work on getting better hydrated. My stomach continues to bother me, but eating helps. I'm going to strive to eat a small portion of protein every 3 hours. I didn't have a sinus headache today.

 The bathroom sinks at MSTI are so tiny....

I slept most of the way home to Mackay from Twin Falls in the back of Bart while Jani drove. We didn't get home until around 7:45 PM - a VERY LONG DAY.

Monday, June 18, 2012

2nd ASCT - Day 31 - June 18 2012

Walked with Kemmer early before the wind got going. Made it 0.56 miles in 15 minutes.

My gastritis continues with a vengeance today...not sure why it is worse today than yesterday. Sinus congestion continues.

Sunday, June 17, 2012

2nd ASCT - Day 30 - June 17 2012

Father's Day June 17 2012 in Mackay, Idaho.
 Judy, Jani, Frank and Jeff Malkiewicz on Father's Day June 17 2012.
Unable to walk today because it was too windy outside. My sinuses are really bothering me again and I'm pretty sure I have another sinus infection, so I rinsed my sinuses with salt water and started Augmentin again tonight. Hopefully, the headache behind my eyes, especially on the left side, will be relieved. I've always had rotten sinuses and have had at least 3 sinus surgeries in the past.

Saturday, June 16, 2012

2nd ASCT - Day 29 - June 16 2012

So good to be HOME - managed to walk around the block twice today - scenery awesome and the air clean! 0.30 miles in 10 minutes and then again in 10 minutes.
Mt. McCaleb and Lower Cedar Creek taken from the old school block Jun 16 2012.
Lilacs still blooming at Bob Bagley's place.
Wild roses blooming at the Moorhead place.
My guts are improving each day which I am so thankful for. I haven't needed Kytril for the last 3 days. Now to work on energy level.

Friday, June 15, 2012

2nd ASCT - Day 28 - MAJOR HAPPY June 15 2012

On only Day 28, my brother, Jeff, drove me from Colorado home to Mackay, Idaho today. We are following Jani in her truck. It was a long trip of 680 miles.
Jani, Jeff, and Judy in Cokeville, Wyoming.
Greeting our 91.5 year old father, Frank, just in time for Father's Day. We are ALL HAPPY HAPPY!
And to top our arrival in Mackay, Idaho off - the weather was PERFECT! 


Thank you Jeff and Jani for bringing me home! I will receive my follow-up care in Twin Falls, Idaho directed by the UCH Transplant Team. Jani will drive me back to UCH in Colorado for a July 12 2012 appointment (Day 55) to have a bone marrow biopsy to see how this 2nd ASCT (autologous stem cell transplant) has worked on my multiple myeloma relapse. But, we will return to Mackay immediately after and get the results over the phone one week later. Depending on the bone marrow biopsy results, a maintenance chemotherapy plan will begin.
The sun is so bright, I'm squinting. That's Mt. McCaleb (elevation 11, 427) over my shoulder - part of the Lost River Range. Taken from my front porch.