Relapsed High Risk Myeloma - Update August 22 2013

Had to leave Mackay at 5:30 AM this morning to make our 8 AM appointment for  a blood draw. For the the first time I had forgotten to put EMLA Cream on first before stuck me the  HUBER NEEDLE. It really was not that painful without the EMLA.

History of All Platelet Transfusions Since Diagnosis May 24 2011

1. Platelet Transfusion March 24 2012 (UCH- University of Colorado)
2. Platelet Transfusion March 27 2012 (UCH)
3. Platelet Transfusion March 29 2012 (UCH)
4. Platelet Transfusion March 31 2012 (UCH)
5. Platelet Transfusion May 20 2012 (UCH)
6. Platelet Transfusion May 22 2012 (UCH)
7. Platelet Transfusion May 10 2013 (St. Luke's Hospital)
8. Platelet Transfusion Jul 12 2013 (St. Luke's Hospital)
9. Platelet Transfusion Jul 23 2013 (St. Luke's Hospital)
10. Platelet Transfusion Aug 15 2013 (St. Luke's Hospital (inpatient)
11. Platelets Transfusion Aug 22 2013 (ST. Luke's Hospital

History of All Blood Transfusions Since Diagnosis May 24 2011

1. Aug 22 2013 (1 unit)
2. Aug 15 2013 (1 unit)
3. Aug 2 2013 (1 unit)
4. Jun 26 2013 (2 units)
5. Jun 11 2013 (1 unit)
6. May 14 2013 (2 units)
7. May 7 2013
8. Apr 19 2013
9. Apr 10 2013
10. May 16 2012 (2 units)
11. April 2 2012  (2 units)
12. Sept 22 2011 (2 units)

WBC count 3.5 (norms 4.5-11); ANC 1.90 (norms 1.9-8.8); platelets 10 (norms 140-440).

Bone Marrow  Biopsy Report from 26 June 2013.

Relapsed High Risk Myeloma - Update August 21 2013

Up early this morning in an attempt to catch my blog up. Brought my laptop to bed and answered as many of the comments as I could figure out. 

Relapsed High Risk Myeloma - Update August 20 2013

Lots of cleaner air today in Mackay, Idaho - Mackay's Heritage Park, aka Tank Park.

Relapsed High Risk Myeloma - Update August 19 2013

I feel better today. My ULTRA-SORE THROAT for the most part feels better. Can drink fluids, especially warm fluids with little difficult. The circumference of my neck had gotten so large, I had to take my "world" necklace off, but it  might be ready to go back on today.  

Our air quality from the Sun Valley fires is improving. Jani went golfing with Helen Marinac and I drifted in out of a nap while they were gone last evening. We made motel reservations for Thursday in Twin Falls. Friends, Ali and Patti will meet us there.  I'll have my St. Lukes' Clinic visit late on Thursday afternoon and hopefully they will know why I developed Type 1 diabetes and how to treat it.

Back to the motel and then we'll get up Friday morning to return to the Cancer Center MSTI for my second chemo for the week. (Carfilzomib intravenously/Pomalyst 2 mg orally).

 US Bank Drive through 19 August 2013. So, I am driving short distances now too.

Jani took the dogs up on the Mine Hill and Kemmer came home with multiple cacti in her paws. Kemmer is very patient while Jani hunts for the cactus and gets them out.

Sharp, little (big) dang things.

Relapsed High Risk Myeloma - Update August 18 2013

Woke this morning with such a ROTTEN sore throat that I needed to get a glob of old blood and mucous out - it just chokes me.  And it was a lot thicker than it looks in this photo. I had another episode while showering today,

I tested my blood sugar at 7:45 AM  (this the before breakfast check) and it was 128, so, I didn't require any insulin.

I was unable to eat my toast and barely able to down my 6.5 dex;. In fact, I had to give taking the pills a couple of tries.

Being a Type 1 Diabetic is  no fun - in fact, it might be a whole LOT LESS FUN than having multiple myeloma. I checked my blood again at 10 AM and needed 2 units of Novalog. Since I did not sleep last night, I napped several times today. 

Jani worked on cleaning the barbecue on my back porch even though the air quality is so poor outside due to the Ketchum Sun Valley forest fire which has consumed over 100,000 acres and is TERRIBLE on the air quality ~ just 50 miles north and west of Mackay, Idaho. 

I'm most likely a diabetic now because of the dex I take every other day. I had been taking 10 mg every other day and now they have lowered my dex to 6.5 mg every other day.

Slowly, my SORE THROAT has been improving today. I've had no more discharge from my throat since I showered. 
.

Relapsed High Risk Myeloma - Update August 17 2013

Jani mowed the lawn with a N-95 mask and sunglasses on because hundreds of Idaho sage  brush acres have burned in the Sun Valley Area. The air quality in our Big Lost River Valley is thick with SMOKE.

Relapsed High Risk Multiple Myeloma - Updated August 16 2013

Dr. Padavanija stopped by early and  told me that I should come down to MSTI after Dr. Tom DiRocco discharged me this morning. I would be getting chemo (intravenous carfilzomizb) and then be on my way home to Mackay with Jani. She wants to lower my Dex dosage to 6.5 mg from 10 mg every other day. I told her about my TERRIBLE SORE TROAT and how RAW it was after it started to to downward by my esophagus.

Before I was discharged from St. Luke's Medical Unit, I had french toast for. Then Dietitian Elba cam by to do the Diabetes  Teaching - and a discussion about what to eat. They also gave me lot of paperwork discussions on carbohydrates, etc.  

 Jani "doggles" and N-95 Mask to protect her during mowing the lawn.

 Bart's windshield is covered with ash from the forest fires in Ketchum and Sun Valley.

Before we left for home in Bart, they gave me an appointment with a diabetes doctor in their St. Luke's Clinic - Dr. Martins at 4 PM for next Thursday afternoon. 

Relapsed High Risk Myeloma - Update August 15 2013

Drove to St. Luke's Hospital MSTI, in Twin Falls. Had my bard power port accessed and my blood drawn and sent to the lab by RN Ann.

My white blood cell count is up to 5.1 (norms 4.5-110) and my ANC (Absolute Neutrophil Count is 2.76 (norms 1.9-8.8) to 2.26. This is very good news because it means I can have my tandem chemo of intravenous carfilzomib/oral pomalyst/oral Dex 10 mg every other day beginning Cycle 2 today.

My hemoglobin is 8.3 today, and my threshold for packed red blood cell transfusion is 9.0., so I will be getting one unit of blood today. My platelets are only sitting at 7 today (norms 140-440). So, I will be getting one unit of platelets today too.

My LDH continues to climb at 2440 (norms 313-618) from 2206 last week (8 Aug 2013). Remember, last week, I did not receive any chemo because my ANC was just 0.8 and the threshold for chemo is 1.0 or higher.

My Chem Panel was out of range this morning - especially my blood glucose level at 592 (norms 60-950). I've noticed that my eyesight is a tad blurry this morning.  They gave me 10 units of insulin sub-cutaneous insulin and rechecked my blood glucose.

So,  now I  am a TYPE 1 DIABETIC - oh Joy~

My repeat blood glucose was just 576 and I received an additional 10 units of insulin at 3 pm, so Dr. Padavanjia is going to hospitalize me tonight at St. Luke's Hospital in Twin Falls and get my blood sugar back under control by tomorrow morning. We are going to lower my every other day dex dose to 6 mg instead 10 mg every other day.


Glucose Readings - 15 Aug 2013
Thurs, 15 Aug 2013 AM - Blood Glucose: 592 - 10 units regular insulin 
Thurs 15 Aug 2013 PM - Blood Glucose: 576 - 10 units regular insulin
Thursday 15 Aug Blood Glucose: (inpatient check 7 pm 473) 4 hundred something - to get 2 types of insulin
Thursday 15 Aug Blood Glucose: (inpatient check 9 pm 211)

My creatinine was normal at 0.9 (norms 0.52-1.04); BUN high at 29 (norms 7-17); and my GFR normal at greater than 60.

My M-Spike was 1.8 (norm zero) from 1.2 (norm zero) on 2 July 2013.

My IgG is high 2406 (norms 700-1600)
IgA  <13  (norms 70-400)
IgM 9  (norms 40-230) 
My IgG was at 1765 on 4 June 2013.  Remember, my cancer is carried on the IgG.

Beginning Friday, 16 August 2013, we will reduce the Pomalyst from 4 mg to 2 mg.  

History of All Platelet Transfusions Since Diagnosis May 24 2011

1. Platelet Transfusion March 24 2012 (UCH- University of Colorado)
2. Platelet Transfusion March 27 2012 (UCH)
3. Platelet Transfusion March 29 2012 (UCH)
4. Platelet Transfusion March 31 2012 (UCH)
5. Platelet Transfusion May 20 2012 (UCH)
6. Platelet Transfusion May 22 2012 (UCH)
7. Platelet Transfusion May 10 2013 (St. Luke's Hospital)
8. Platelet Transfusion Jul 12 2013 (St. Luke's Hospital)
9. Platelet Transfusion Jul 23 2013 (St. Luke's Hospital)
10. Platelet Transfusion Aug 15 2013 (St. Luke's Hospital (inpatient)

History of All Blood Transfusions Since Diagnosis May 24 2011

1. Aug 15 2013 (1 unit)
2. Aug 2 2013 (1 unit)
3. Jun 26 2013 (2 units)
4. Jun 11 2013 (1 unit)
5. May 14 2013 (2 units)
6. May 7 2013
7. Apr 19 2013
8. Apr 10 2013
9. May 16 2012 (2 units)
10. April 2 2012  (2 units)
11. Sept 22 2011 (2 units)

Left St. Luke's MSTI after my blood transfusion and platelet transfusion to be admitted to their Medical Unit 3232. Developed a headache and a SEVERE SORE THROAT. They gave me throat lozenges and that helped, but I was still having BAD PAIN even trying to swallow m own saliva.

My experience in-patient was not fun. I didn't have any food because no one was sure I could have food with "my new diabetes", but they were checking my blood sugar and and giving me insulin (14 units of Lantus); and various amounts of NovoLog (short acting insulin). Finally  managed to get them to give me a pail pill around midnight.

Relapsed High Risk Myeloma - Update August 14 2013

Woke with TERRIBLE BACK AND RIB PAIN on 13 Aug 2013. Jani helped me decide which type of pain pills to use - Oxy 5 mg without any acetaminophen. Spent all day being one with the sofa, but my mind remained clear. I worked on ancestry files.

Jani made Chicken Stir Fry with Vegetables for dinner after her massage.

Robbyn and Kisha sent a painting yesterday entitled "The Girls" and Jani hung it in the living room.

Jeff left Mackay, Idaho for Colorado early this morning.  He has a dental appointment in Colorado Springs on 15 Aug 2023 at 1 PM.

Relapsed High Risk Myeloma - Update August 13 2013

Today, 13 Aug was the 9th anniversary of Lindsay's death (age 24) in the car wreck with her boyfriend and another boy - all 3 were killed - we cried alot today. Her best friend Laney Om posted a wonderful video on Facebook and it was delightful to hear Lindsay's voice.  Lindsay was my only niece and only daughter of my brother Jeff and his wife Carol. 

Below the Malkiewicz Family in Aurora, Colorado circa 1983. Left to Right Back: Judy, Jani, Jeff, Carol; Front Row: Lindsay, Frank, Chris holding Kahlua, Nick.

 Lindsay on JackRed, Mackay Idaho July 2004.

Relapsed High Risk Myeloma - Update August 12 2013

Spent several hours on JackRedToo (2012 Honda Rancher Wheeler). My legs are weak and ache from the inside. I know, whine, whine, whine. Either Jeff or Jani has to help me get on on off my 4Wheeler.

Riding down toward Taylor Canyon on the BLM Road North.

Judy Malkiewicz chatting with Bart Wojciechowski, Mason and Dickson at the MINE HILL CATTLE GUARD.

On the way to Windy Devil. Jani (2004 Yamaha), Judy, and Jeff (2005 Honda Rancher) .

Big brother, Jeff.

John Powers Lake above Mackay, Idaho.

Jani and Zoe with a donut collar since Zoe has a head abrasion.

Looking back from our excursion - click twice to enlarge.

Relapsed High Risk Myeloma - Update August 8 2013

Up early Thursday, 8 Aug 2013 and drove to St. Luke’s Hospital MSTI in Twin Falls, Idaho. I slept almost the entire way in the back. RN MeLisa drew by labs out of my Bart Power Port – hit the side first, but it will heal.

We waited for the lab results in Dr. Padavanija’s exam room.

My labs are difficult to interpret today.

My platelets were 15, which is fine and Dr. Padavanija said she wasn’t too concerned about that anymore, especially since I’m not bleeding anywhere.

My white blood cell count was up a tad to 2.1 from last week’s 1.6, but that was not high enough to continue with the Cycle 2 carfilzomb/Pomalyst.

However, my ANC (Absolute Neutrophil Count) is OF CONCERN right now. Last week was a planned rest week off ALL chemo, both intravenous carfilzomib and pomalidolide (Pomalyst 4 mg capsules) orally taken from 1/21 days between Cycle 1 and Cylce 2. However, I continue to take 10 mg Dex every other day.

I was to begin Cycle 2 of the carfilzomib/Pomalyst today, 8 Aug 2013. However, the recommendations with this tandem chemo plan is NOT to give unless the ANC count is at least 1.00. My ANC (absolute neutrophil count) today had gone up from last week’s 0.4 to 0.86, but not to 1.00.

This could be due to a one of a couple of issues.  Perhaps the Cycle 1 carfilzomib/Pomalyst is holding the ANC down OR the plasma cells (my myeloma cancer cells) are just continuing to grow in my bone marrow despite the tandem chemo plan. My scheduled 29 Aug 2013 bone marrow biopsy will also be delayed at least one week until 5 Sept 2013.

I’ve been a tad out of breath and was expecting my hemoglobin to be less than 9.0. However, it was fine at 9.6 and I did not need a blood transfusion today.

We decided to hold the beginning of Cycle 2 carfilzomib/Pomalyst) for another week. So, we left St. Luke’s Hospital without ANY CHEMO today.

Jani and I went to Walmart and as long as I held on to the basket, I was pretty good in the energy department.

My left leg has really been hurting me, especially in my left groin to toes areas. I finally broke down and took an oxy 5 mg Immediate Release tablet and had ALMOST INSTANT RELIEF! I always think pain pills are going to interfere with my sleep, but not today in Bart.

I waited in Bart while Jani did a few more errands and we were off home to Mackay. We had take-out bean burritos from Taco Bell. Half of my burrito ended up on my t-shirt and we had to stop in Shoshone so I could change my t-shirt – remembering my University of Northern Colorado Days when EVERYTHING I OWNED had burrito juice on it! Then, I slept from Shoshone to Arco – nice to have such a good driver!

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 6 2013

I was supposed to go to get my blood checked in Arco, Idaho this morning, but decided not to. We are going the day after tomorrow to St. Luke's Hospital in Twin Falls and I will have it checked, then. I'm betting my platelets are okay, but I might need another packed red blood cell transfusion as I'm a tad out of breath with even easy walking.

We decided to go to the old, restored, Shay Engine Trestle Bridge today. Jeff drove my 4-wheeler up to the beginning of the trail, while Jani and I went in Jonah (1999 Honda Passport) with the dogs. We have wanted to do this all summer.

Jani and Jeff walked the trail and I rode SLOWLY along on the Shay Trestle Road on JackRedToo (2012 Honda Rancher 4-wheeler). We stopped along the way and used the tow strap tied to JackRedToo to look for rocks.

 Shay Trestle Bridge which was restored 9 July 2002.

Our Lewis and Clark pose! (below)/

Transcription of sign, which is difficult to read in the above photo. 

"The original trestle was constructed about 1901 by the White Knob Mining Company using timbers but at nearby sawmills. It was part of the company’s electric railroad system used to shuttle ore and supplies between the mines and the smelter near the river below, and spans 105 feet and is 25 feet tall as it crosses the gulch.

The mountain railroad covered about 7 miles, its 36-inch tracks witch-backing across the face of  the mountain at a 6% grade. Initially, the trestle supported only the load of electric motor engines and ore cars, but in 1905 the heavier more powerful coal-fired Shay locomotives were put into service, individuals weighing over 30 tons. Although the structure was up the its new loads, its purpose was short lived as the entire rail system gave way to the gravity aerial tramway in 1908. By 1920, the tracks had all been taken up and the entire roadbed, including the trestle was being used as a scenic automobile route.

Much of the old railroad right-of-way and  its trestle have remained a popular route for local and visiting hikers, hunters, site-seers, horsemen, ATV’ers and  even bikers competing in Mackay’s annual mountain bike race. The trestle has seen a number of miner repairs through the years but was condemned in 1995 and underwent a major renovation in 2002. The rebuilt trestle includes  a traffic restriction to all vehicles  over 50 inches wide and a cable side railing for safety."

 I rode JackRedToo with Kemmer home.

I did well on the 4 hour trip except my legs are so weak, I needed help from Jeff and Jani getting on and off JackRedToo. I've just lost all the strength in my thigh muscles and knees. We had a great time - siblings x 3.

Came home and had a nadir after lunch.

Jani went golfing with Helen Marinac after she made dinner (homemade tacos). The skies were clouded with some forest fire smoke, but for the most part that did not bother me at all. I wore a N-95 mask on the way home. Kemmer still loves riding along.