Relapsed High Risk Myeloma - Update August 27 2013

Woke this morning feeling much better. My gait is improved and I can move from the sofa to the sitting position with a lot more ease.
I'm getting used to checking blood glucose  4 times a day and and at bedtime. I have not needed extra Novo insulin (fast acting insulin) more than 2-4 times daily. And at bedtime, I have to take 10 units of Lantus (long lasting) insulin.

Relapsed High Risk Myeloma - Update August 24 2013

Really had a good day. We got the 4-wheelers and coolers ready or a trip up the Mine HIll at 12:02 PM . We made a bee-line for the Shay Trestle returning down the MIne Hill at 2:30 PM. It had just started to rain lightly. 

Ali and Patti rode together, while Jani rode with Zoe and I rode with Kemmer. 

I almost killed Kemmer and myself near the double tramway...I was watching 2 hunting dogs with their owners when I veered off into the right sided-barrow pit. It was a big jump and almost knocked both Kemmer and I off the 4-wheeler. I'm not proud of the maneuver. 

We continued on to the Shay Trestle road and stopped for a photo op. 

I slept in and and I felt fine. I haven't had a nose bleed and all is well.

Continue to check my blood glucose 4 times a day and bedtime. My blood sugar has been running 223, 274, 272, 231, etc. My nova insulin needs are running between 2-4 units. It is difficult being a diabetic and I'm testing all the time.

Relapsed High Risk Myeloma - Update August 7 2013

Teresa Mitchell Harding brought her parent's new pug puppy over for a greeting. Her name is Nellie.

 Such a cute litte pup!

Relapsed High Risk Myeloma - Update August 4 2013

Had a some better day today. Jani and I walked the dogs up and down the block early stopping to visit with neighbor, Teresa Harding. My knee pain seemed to be totally gone, but I still have some shortness of breath with walking. My oral thrush is gone and my mouth feels normal again. I still have some in my esophagus, so I took another fluconozole pill.

Teresa and her husband, Randy found an old poster when they bought the Pilash place.

Jani took a photo of it, "My Little Chickadee" with Mae West and W.C. Fields put on locally at above Chilly at Dickey above Mackay, Idaho (that's just over 20 miles from Mackay. Life before television and all the technology that we have sure made things interesting and a lot of people participated. Poster Date Unknown. From the Tom Pilash Collection.

Talked to  Scott Johnson on the phone...even without seeing his grin - he makes me smile.

I didn't have the energy to go to the last day of the Custer County Fair, but Cora Lockie brought my apricot jelly by along with my red ribbon - someone should really figure out a craft idea that uses all those fair ribbons as I'm sure every household in the area has PLENTY. Cora visited for about an hour and I loved hearing about her grandkids and great-grandkids. Earl was on the Mine Hill giving a personal tour to a BLM administrator. 

I watched golf all afternoon even though Tiger Woods was so far ahead...with a short nadir here and there between holes and even during holes. I also walked around the house for 5-10 minutes each hour too - too much one-with-the-sofa. 

We had Jeff and Dad over for a taco dinner tonight - Jani makes the best homemade tacos.

Wished Shirley Olsen a Happy Birthday today. She's the best and spent her birthday in Twin Falls, Idaho with family.

Relapsed High Risk Myeloma - Update July 28 2013

Slept well through a night of, rain, thunder and lightning. Woke to a brand new baby colt in the field behind my house. Blue, the mare, probably had Thunder about an hour earlier and was still with afterbirth. Baby Thunder looks just like mom Blue and is very tall.

I called the owner and Blue let her right up to check the colt and afterbirth progress.

I feel much better this morning. My legs are stronger and my mobility not so rigid.

My sore throat is much better too.

I drove Bart (2006 Honda Pilot) to get gas at Sammy's. Rarely do we have different gas prices between our locally owned Sammy's and the national chain Chevron gas stations... but we did today. I ALWAYS go with Sammy's no matter the price. Was going to stop at Ivies (groceries) but it was very crowded and my ANC is less than 1.00 at 0.66 - so, without a mask, I didn't stop. My sore throat is some better - well, a lot better today.

We went to visit Gretchen Lawrence - our dogs really were interested in her cats.

The B Family with my favorite "B's" came by for a short visit as they headed up the Mine Hill on their 4-wheelers.

Kobe, Helen, and Andrea Marinac brought their brand new puppy, Mocha, over today - she is so cute and will be so loved. A day with a new colt and new puppy!

More iphone apps via Jani and her imagination.

Relapsed High Risk Myeloma - Update July 24 2013

Had a very quiet day on the sofa. Didn't go any where all day, so I didn't get Earl Lockie's 80th Birthday Card in the mail.

Now it is time to to get up and get something  done !

Relapsed High Risk Myeloma - Update July 17 2013

Guts are much better - no burning at all today.

I went for the mail at the Post Office and delivered it to Paco at his house.

Stopped at the Mackay Library and visited with Shirley and Wayne Olsen for a few minutes.

Jani and I delivered the tea towel sets (ducks) to Linda Williams who will distribute them the Ladies Aid stitchers. Ladies Aid usually meets on Wednesday's, but not today. 

I spent the rest of the day one-with-the-sofa. We had a very brief rain storm.

Relapsed High Risk Myeloma - Update July 16 2013

Total rest day. My guts are some better - less burning.

Worked on genealogy most of the day and was one-with-the-sofa ALL DAY. Except, Jani and I went to the library to look for an obituary and we even found it!

Cora Lockie brought some cooked beets over from their garden - YUM.

Relapsed High Risk Myeloma - Update July 15 2013

Didn't sleep at all. Finally, got up at 2 AM and sat on the sofa until daylight. My guts are an ACID-MESS. I took Kytril with little help. My legs are creepy and both of my hips hurt. I took Zantac and Prilosec...nothing seemed to help.

Since I was up all night, I was tired all day and didn't do anything except go for the mail for my father. Worked on my geneology files some. I'm very careful not to bump myself in any way, so I won't bruise or start to bleed.

I continue to to have neuropathy in both feet - most of the neuropathy is on my left side from my foot to my groin, but I also have a good case in my right heel. Plain acetaminophen helps the most. My legs are quite weak and if I squat down, I need help getting up.

Jani, Robbyn, and Faye worked on putting the transfer drawings on seven (7) tea towels with a vintage 1950 pattern of ducks that the Mackay Women's Ladies Aid will stitch. It was quite the project and it took the 3 novice "tracers" most of the morning. I did a lot of watching since my hands are shaky from Dex and my fingertips numb from neuropathy - sewing is not in my future.

Here is a sample.

We took a drive to the Mt. McCaleb Cemetery and on our way home saw a blue heron right in the middle of town. We  drove by Ron's again, but he is still gone.

Faye and Robbyn packed up, so they could catch their flight back to Denver DIA from Idaho Falls at 4 PM. They left Mackay around 2 PM. L to R: Jani Malkiewicz, Faye Hummel, Judy Malkiewicz, and Robbyn Wacker with Kemmer. Even though they were here just under 24 hours, it was good visit!

 Judy Malkiewicz and Robbyn Wacker as Robbyn returns to Colorado.

After they left, I had an almost 1 hour long nadir. Jani made dinner and another day in paradise. My guts continue with BURNING FIRE ACID.

Relapsed High Risk Myeloma - Update July 14 2013

Almost threw up 3 times in night . Took Prilosec,  20 mg Pepcid;  Kytril at 3 am, 2 tums - ate crackers and cheese. Need to tell Debbie pharmacist at St Luke's . Today, I got 10 mg dex intravenously. 

I had the same reaction to pomilidamide (Pomalyst) back on 4 Apr 2013 when I took it just with dex. This is not going to be fun if my gut doesn't adjust..

Then, last night I bit the inside of cheek while chewing (CANDY) and it bled. We applied pressure and ice and got it stopped within 15-20 minutes. I don't think I lost very much blood, but the inside of my right cheek is sure sore.

Early, while there was still a little chill in the air, Jani and I decided to ride the 4-wheelers up the Mine Hill with Kemmer and Zoe.

It was a fabulous blue sky morning...and I tried not worry about bleeding from my low platelets. But, we decided riding JackRed2 wasn't much different than riding in Bart (2006 Honda Pilot).

Jani parked her 4-wheeler and walked the dogs down to to the Taylor Canyon Road. I road JackRed2 behind them at about 8 miles per hour.

We stopped at Ivies on the way home and did some grocery shopping. The dogs are good to wait for us on the 4-wheelers without being tethered down.

We went by to visit Ron, but he wasn't home.

Our visitors from Colorado arrived in their rental car after flying from Denver's DIA.

Faye saying hi.

Faye, Judy Malkiewicz, and Robbyn greeting on the front porch...so good, to see them. They are both just back from teaching in Vietnam for 2 weeks.

Had a nice visit from local friends Marilyn and Mason too.

Spent the rest of the day one-with-the-sofa.

Maynard's filly is growing so fast.

Relapsed High Risk Myeloma - Update July 13 2013

The skin around my Bard Power Port on my right chest is red and irritated. Perhaps I am reacting to carfilzomib, pomalidomide, or just low platelets and Tegaderm cover I had yesterday.

I had a rough night with little sleep. I had creepy legs and pain in both hips. I took pomalidomide alone back in April 2013 (5 -17 April 2013) and I had similar symptoms including no energy, left-sided headache (migraine-like) and left-sided neck ache. The pomaidomide also caused problems with my GI emptying  and I had belching, reflux, abdominal pain radiating to my back. In April 2013, I managed these issues with daily Senna S and Phillips Tablets along with increasing my daily fluids to 2,000-3,000 ml.

Pomalidomide (Pomalyst) has to be taken on an empty stomach - either 2 hours prior to eating or 2 hours after eating. 

This Cycle 1 includes the Pomalidomide 4 mg (Days 1-21) and intravenous carfilzomib twice a week. 

Hopefully, my 12 platelet count will SURVIVE this tandem chemo drug  administration enough to lower my 100 percent plasma cell involvement in my bone marrow, so I could make a few of my own platelets - wishful thinking!

Jani walked the dogs on the Mine Hill - it was HOT. I rested on the sofa.

 We replaced our father's old plastic lawn chairs with new lawn chairs. Those plastic ones are prone to crack and break, leaving you on the ground.

 We all went to the Sammy's Grand Re-Opening under new management for a FREE hamburger or hot dog. Had a good time visiting with friends.

Since Dad has a hard time walking, he just drove his golf cart through the food line.

 Sammy's new owner, Fran Magee.