Relapsed High Risk Myeloma - Update July 7 2013

"My people" from Colorado packed up and departed Mackay, Idaho this morning for Greeley, Colorado. L to R: Jan Martin, Judy Richter, Judy Malkiewicz, Nancy White, and Walt Richter.

I spent the entire day one-with-the-sofa except for a quick run to Ivies for milk. Jani changed all the beds and did the laundry, mowed the lawn, did the weed eating and had a short nap.

I had really creepy legs today and took plain Tylenol (acetaminophen), which really helped a lot to calm them down. My GI tract is going QUICKLY south again with no reason why. I have not been on any chemo for a week (my off week). Developed a new spontaneous bruise on the inside of my left calf too.

The little filly behind my house was have a great time today --- running circles around her mama mare - just like puppies do sometimes - we call them "lune-spells".

Relapsed High Risk Myeloma - Update July 6 2013

Woke with a headache this morning - don't think I drank enough water yesterday, so I will try harder to hydrate today. I took 1/4 tablet Percocet, drank my coffee and an extra bottle of water and the headache was gone by 10 AM.

I'm getting bruises on my legs with no memory of bumping them - probably due to my low platelets - 17. I hope they are not even lower now because they are being "squeezed out" by all the plasma cells (cancer) in my bone marrow (95-100% now).

Up early to meet Ken Day, Mt. McCaleb Cemetery Board President to determine the placement of my headstone at the cemetery, which should be ready around 11 July 2013. Jani went with me and it didn't take long to see which burial plots we owned and my choice of headstone placement within those plots.

Afterwards, we met Richters, Nancy White, and Jan Martin at the Mackay Farmer's Market in Kid's Park. They were having "Art in the Park" today too with highlighted water color artist , Ruth Sauerbreit.

Home and loaded up to a Mine Hill Tour in Jonah (1990 Honda Passport)...spending several hours up on the Mine Hill. I think we FORGOT to feed them lunch...

Double click to read text clearly.

Jani skipped the Mine Hill Tour and walked the dogs on the Mine Hill being visited by cows and calves as the took the BLM Road South just above the Cattle Guard.

Dad sang Polish songs to the Richters, Nancy White, and Jan Martin. Polish is my father's first language - he immigrated from Poland to Brooklyn, New York when he was 8 years old with his family.

Then, the Richter's visited the Lost Rivers Museum here in Mackay, Idaho on their way back for dinner at my house.

Again, Jani barbecuing steak, corn-on-the cob, coleslaw, and homemade potato salad - followed by a locally homemade Wendy berry pie with ice cream.

After "my Colorado people" were at the Museum and came home, Ken Krishnek visited me and I gave him photos I had scanned and printed for him of the former Ace Shinderling's, Mackay Sport Shop. It was just north up the street (Custer aka Highway 93) from the Texaco Gas Station in the 1940's. The Texaco Gas Station is now the Sport Bar managed by Floyd Deats. Floyd has may of the same items for sale as Ace Shinderling for fishing and hunting. Ace, however,  did not have beer and wine for sale. 

Ace Shindering would sell fishing equipment and fishing flies that he and his wife, Sue, would make.  Ace in  front of his Mackay Sport Shop.

Ace kept this giant fish frozen the in the back of his place and when someone would stop by the shop for the first time, he'd retrieve the frozen fish and tell the new people that he just caught it the day before and they "too" could catch a fish like this if they bought one of his homemade fishing flies. :)  Ace probably showed this SAME FISH for 20 years~

Ken's son, Dan and his grandson, Zack climbed Mt. Borah yesterday - the tallest  mountain in all of Idaho at 12,668 feet and located just 19 miles north of Mackay, Idaho.

My neighbor called today and wanted to know the day her stallion bred her mare last summer, so she could calculate the mare's due date this summer. The stallion and the mare were only together on this day. I just happened to catch the day the stallion mounted the mare. The average gestation is almost a year long. So, based on this photo, the mare should foal around 4 August 2013.

Updates April 27-28 2013

Feeling pretty well. Decided to go watch Johnson's branding for awhile Saturday morning 27 Apr 2013. The calves looked so little. I didn't stay long because of the dust in the air.

Came home and slept most of the afternoon.

Today, 28 Apr 2013, I had a lot more energy, showered, did 2 loads of laundry, and worked several hours on scanning genealogy files. 

Have a bit of a sinus headache and took 1/2 of pain pill. My bone marrow biopsy site of 26 Apr 2013 continues to be sore. The radiating pain I had down my left leg comes and goes, but I think it is getting better. Harder waiting for the results.

Cora made me some potato salad and Earl delivered it -  yum! Had a nice visit from Vickie Mae.

Then, I walked Kemmer slowly for quite a ways on the BLM Road South on the Mine HIll.

 At least I was out in the sunlight for almost 40 minutes, which is good for Vitamin D.

 Found a penny that my M sent, I'm sure.

Did the grocery shopping at Ivies and bought dill pickles for the leg cramps. Visited my father for awhile. Came home to work on the computer some more. Had a slight bloody nose, so my platelets must still be way too low.

February 22 2013

The bruise over my Bard Power Port is healing nicely. 

Walked Kemmer 0.82 miles. Most of our snow has melted, but the forecast is for snow tonight.

Summary February 8 to February 12 2013

February 8 2013: Couldn't sleep last night and finally got up at 3:15 AM...might as well do something than fret that I cannot sleep. 

My guts are hurting. I took Pepcid on top of Zantac and Prilosec with a little relief. The burning sensation in my stomach with pain that radiates around my chest feels best when my stomach is FULL. 

I noticed today for the first time a little bit of hair in the shower drain - the first hair that I've lost since March 2012! I think this is just normal hair growth and loss.

February 9 2013: Slept much better and have a lot more energy today. Continued gastritis and I took Pepcid again. Worked all day on my medical deductions for my taxes and I'm almost finished.

February 10 2013: Again, slept better and my energy seems good. Revlimid Day 12/21 and diarrhea as usual. Continued gastritis.

The bruise by my Bard Power Port continues BRUISED.

I can take Dex 10 mg on Sunday's, but decided not to - mainly to control my appetite.

I walked Kemmer 1.28 miles. Windy and cold.

Mine Hill from Big Lost River Smelter Bridge Feb 10 2013

New hat from a friend in Alaska. She made it!!!!

February 11 2013: Woke really TIRED this morning. Finished up my taxes and got them in the mail this morning - YEA!

The injection sites on my abdomen have been oozing a little bit of blood (very little), so, I think my platelets must be low. I only gave myself 7,500 units of Fragmin tonight instead of the normal 15,000 units. Called and ordered more Fragmin which will be delivered Friday, 15 Feb 2013.

No walk today because it is just too cold outside.

February 12 2013: 
Bruise continues next to my Bard Power Port, but it starting to change colors in healing.

Cycle 4 Week 2 Day 2 Carfilzomib/Dex and Day 9/21 Revlimid 10 mg - February 7 2013

Woke this morning in the Twin Falls motel with quite bruise over my Bard Power Port. The area doesn't hurt as much as I thought it would.

Put EMLA cream on and went to St. Luke's Hospital Infusion Center for my 2nd day of Carfilzomib/Dex. I forgot my non-stick pads for the ELMA cream and ended up covering the EMLA with a mask...hoping it would work.

The EMLA worked and RN Letia got right in with a 1 inch Huber needle vs the 3/4 inch needle used yesterday. They used one of the white padded Huber needles that I'm allergic to, but because it was 1 inch it stood above my skin a tad and they put gauze in the space.

Received my carfilzomib 27 metered square dosage and took 4 mg dex orally.

On the road home to Mackay by 9:10 AM. No fog this trip and that was nice...and the hay hauling trucks were clearly visible.

Craters of the Moon covered with snow. Feb 7 2013.

Feeding horses along Highway 93 on the way to Mackay Idaho Feb 7 2013

Home around 11:20 AM  28 degrees and partly cloudy. Then, I went to get Kemmer and had a take our hamburger from the Mine Hill Grill - yum.

Bruising Due To Low Platelets - October 18 2012

Because my platelets were only 80 (norms 140-440), my 17 October 2012 bone marrow biopsy site on my right iliac crest bruised. I've had some discomfort at the site, but not bad. The biopsy was done with the OnControl Driver vs hand trocar.

I also have bruises from the blood draw on the inside of my left arm done 16 October 2012.

And from the IV they started on the inside of my right arm on 17 October 2012 to give me the fluids for my high creatinine.

My subcutaneous Velcade is red on the back of my right arm, but does not itch or hurt.

Nancy White and her dog, Lucy,  stopped by Jani's house to visit. 

Safelite came to Jani's house this morning and replaced Bart's windshield which which was damaged by the gunshot in Wyoming on 14 October 2012. So, Faye Hummel and I will be set tomorrow to head back to Idaho.

2nd ASCT - Day 120 - September 15 2012

Busy day in Mackay, Idaho. Our annual Mackay Barbecue is held the 3rd Saturday of September. I had a good time taking photos and visiting with people. Here is one of favorite people, Kase - he forgot to smile.

From the Mackay Barbecue, I headed over to my father's house. I took my father a barbecue sandwich with the homemade sauce (made at Ivies last Wednesday night). I had it pretty well- balanced for a nano-second when it went spinning out of control in Jonah and I soon had spicy barbecue sauce all of me and the car. I delivered the sandwich and went home to clean the car. Jonah (1999 Honda Passport) now has "Ode to Barbecue" fragrance with a touch of Wool-Lite cleaner.  While I was cleaning the seats in the car, a wasp tried to attack me and I ran my left elbow in to the door jam. I also made my right hand bleed a tad and it took forever to clot...so, perhaps Zolinza has lowered my platelets. We'll see on Tuesday, 18 Sept 2012 when I go for my next blood tests.

I visited with Virginia Chaney Layne and her family who were visiting my father from Caldwell, Idaho.

Frank Malkiewicz and Virginia Chaney Layne. My father lives directly across the street from the house that Virginia grew up in - no one lives there, but her family still owns it.

Virginia Chaney Layne's childhood home (below).

Virginia Chaney Layne was one of my M's closest friends. Below is a picture of them (my M is on the right) standing in the Big Lost River. My M didn't have swimming suit and borrow an old wool one from Virginia. I adore this photo taken circa 1931.

And then on to the St. Barbara's Catholic Church Centennial Celebration at the church.

Enjoyed with with Margaret Kahler Brackenbush, her husband, Fred, daughter, Carrie, and grandson, Avery. Margaret told me that when she was child, they used have the Catholic Church Easter Egg Hunt at their house on the lawn because St. Barbara's yard area (shown above) was sage brush and weeds.

And then, on to the final affair of the day, Lew Greene's annual barbecue. He says this is his last.

Of course there was EATING at each and every one of these events and I did just that. But, I couldn't finish off the plate below. It was so yummy.

I was surprised at how my energy held up for most of the busy day.

Below is my M's last Mackay Barbecue on Sept 18 2003. My M LOVED the Mackay Barbecue and I miss my M!