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 July 26 2013

Slept pretty well in the motel - but, I had taken 2 1/2 Imodium which makes me tired. Unfortunately, I had a tad of bleeding from the back of my throat and rectal area. They are sending me home with stool sampling materials - oh joy ~

Arrived at St. Luke's Hospital MSTI for our 8:20 AM appointment. They decided to draw a CBC and a CHEM Panel and we had to wait for those results and then a consult via the RN from Dr. Padavanija who was seeing clinic patients on whether I could receive my carfilzomid chemo today...this took a long time and Jani left to find breakfast somewhere.

My white blood cell count has dropped to 1.7 (norms 4.5-11); ANC to below 1.0 to 0.66 which is not good and might have held my carfilzomib chemo; my hemoglobin dropped to 8.6 and I could have had a red blood cell transfusion, but decided against it for now. MY platelets dropped from 37 of yesterday to 21 today and they said I could have more platelets if I wanted them too, but I didn't want to wait around all day for that either, so declined.

My chem panel was essentialy normal and my mild kidney failure, if all, is MILD.

I go to Lost Rivers Medical Center Lab on 30 July 2013 and will get my blood tested. Depending on the results,  I will probably need both red blood cells and platelets on that day at St. Luke's in Twin Falls - but, at least, we'll be prepared to wait that day.  If I decide to stop the transfusions, it probably would not  take long for me to die.

My brain is cloudy at times which I attribute to the anti-nausea medication Kytril...but, I'm still able to blog and do my ancestry stuff.

Relapsed High Risk Myeloma - Update July 23 2013

Had trouble sleeping again - seems I have my days and nights mixed up. I slept most of the day yesterday on the sofa, which kept me quiet and not bleeding at all !

Had a call from Dr Padavanija's office early and she wanted me to go to Lost Rivers Medical Center Lab in Arco, Idaho and get my blood (CBC) drawn this morning. So, off we went. Good thing too - my platelets had dropped to only 7 and I needed to have a "rescue platelet trransfusion TODAY! ! !. 

St. Luke's Hospital in Twin Falls was able to order the platelets for today from the Lost Rivers Medical Center blood value drawn this morning. So, as we drove to Twin Falls, they were working getting the platelets in the building by the time we arrived at St. Luke's Hospital MSTI.

Dr. Padavanija sent word via her nurse that I could bleed out at any moment with a platelet count of just 7 - scary. I may be at the end of my "platelet rope", but, I'm not really ready to die. I have too many things left to do on my ancestry.com. 

Talked to Randy Nelson a couple of times while he was driving 5 bulls home from Oregon - he is good to to stay in touch with me. He also stopped on his way to help a young couple from South Caroline who had run out of gas and got them back on the road at his own expense...nice Randy!

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)

Paco came and let our dogs out a couple times while we were gone. On his 1st trip over he LOST Kady-from-Kansas (12 1/2 years old). Paco has a very difficult time walking due to spinal stenosis and lets himself in to my house via the garage (shortest route). He forgot to shut the garage door and Kady went through the dog door and was GONE. Paco hobbled around the outside of the house looking for Kady when he finally saw her lying on the front porch - just waiting for us to come home. On Paco's second trip, he shut the garage door after coming in and there was no more excitement!

Shirley and Wayne Olsen fed our dogs for us before we got home. They also dragged a new fan with a hepa filter in from the front porch left by the UPS Driver. We have so many forest fires out of control just 50 miles north of of us in Challis, Idaho that the filters are essential. Although pricey, I love these fans.

We also bought replacement filters that Jani changed out tonight. Jani, like my brother, Jeff, can fix anything.... I missed the fix-it gene and HATE reading directions! ! As Jani read the manual, these filters should be changed every 3 months, just like the in-cabin filters in your car/truck.

Below is a clean black filter that will turn the dirty white color on the right as it fills with debris.

Relapsed High Risk Myeloma - Update July 12 2013

Stayed in the motel last night - sure wish I could sleep solid like Jani does. Jani swears she could not sleep at all until she rummaged through her backpack for a set of earplugs since I was SNOOZING! Every time I was awake, she was ASLEEP and I was awake at least every 1-2 hours.

I had more energy this morning - so, I guess 2 units of packed red cells yesterday helped me.

Andrea Marinac walked our dogs and hers (Koko...little black and white dog on left) this morning and was surprised to discover our dogs do not need leashes...what can I say - they are "almost" perfect pups!

Went through about 1 hour of PANIC this morning at the motel when I could not find my wallet. We tore that motel room apart and I'm sure when the maids came in after we left this morning, they WONDERED OUT LOUD - what did those sisters do in there last night. Jani finally found my wallet between Bart's passage side seat and the console  - "THE LOST ZONE."

We came over to St. Luke's Hospital Infusion Center and I had a complete blood count done. My platelets were even LOWER than they have ever been at 12. RN Leita had to talk to Dr. Padavanija on how to proceed.

My white blood cell count was low at 4.0 (norms 4.5-11) with 20 bands (norms 0-4); ANC normal at 2.98 (norms 1.9-8.8); hemoglobin low BUT SOARING HIGH FOR ME at 10.7 (norms 12-15); and platelets PROFOUNDLY LOW at 12 (norms 140-440) - as low as they have ever been for me. 

Because my hemoglobin was so high, I had no difficulty walking in from Bart (2006 Honda Pilot).

They decided they would go ahead and give me my intravenous carfilzomib dose along with my 10 mg of dex intravenously. I also needed extra intravenous fluid for (normal saline) the carfilzomib. Dr. Padavanija thought it best to boost my LOW PLATELETS with a platelet transfusion today.

Unfortunately, the only available platelets are in Boise, Idaho, which cannot be transported the 132 miles here to Twin Falls before 3-4 PM. Then, the platelets would have to be irradiated before I can receive them. 

Hence, Jani and I are here for a long wait - I'm in the Infusion Center recliner working on blogging. 

St. Luke's Hospital MSTI feeds lunch to their patients FREE from a rolling cart with this nice lady serving.

Jani went retailing AGAIN. The view outside the Twin Falls, Idaho Sportsman Warehouse in to the downstream Snake River Canyon below. It is not too far from the Perrine Bridge where they (very stupid dumb people) base jump.

Looking at the Perrine Bridge over the Snake River Canyon.

Looking downstream on the Snake River toward the Perrine Bridge.

My platelets finally showed up just after 4 PM (232 ml of platelets).

RN Ann and RN Leita checked the numbers on the platelets and RN Letia hung them to run  by gravity...considered my rescue platelets.

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)

We left Twin Falls after stopping at Taco Bell for a take out dinner. Arrived back home in Mackay, Idaho for the Sammy's Grand Reopening about 7:30 PM where we had caffeine-free root beer FOR FREE.

Judy and Jani Malkiewicz enjoying caffeine free root beer at LOCALLY OWNED Sammy's.

Sammy's gave out free fountain drinks and coffee today for their Grand Re-Opening and new Magee family management acquired from the Marinac family. Tomorrow, they are all set up for FREE hot dogs and hamburgers from Noon to 4 PM. Don't miss is it ! !

Mackay resident, Judy Malkiewicz and employee, Marla Colson.

Relapsed High-Risk Myeloma - Waiting for Platelets - May 10 2013

Jani and I drove back to the pharmacy, now open, and dropped of my prescription for some new sleep aid.

Then, back to the St. Luke's Hospital parking lot to wait for 4 PM. We both got back in the super memory foam bed in the back of Bart - it was 78 degrees and delightful.

 Our thumbs up HOPE.

 Of all days, I forgot my computer today...so, had to be happy with my iPhone only.

Because it was so late in the day, I had to go to another St. Luke's Hospital Outpatient Infusion center where they mostly give arthritis treatments. They have not given platelets in a long while - fortunately, RN Vicki from the Cancer Infusion Area where I usually go stopped by on her way home from work with a note to remind to STOP aspirin now. She told the nurses how to deliver the platelets to me - use blood tubing and let it run by gravity, not through the IV pump.

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)

Jani waited awhile in the memorial rose garden outside St. Luke's Hospital which is not my favorite thing - especially as you walk in for your first treatments - looks like they don't save anyone and they have all these memorials.....just a thought.

Jani went back to the pharmacy to pick up my prescription while I got the platelets. If you're counting, that's 3 times today to the pharmacy...then she went shopping and bought our Mother a plant for Mother's Day.

 We'll put it out at the cemetery tomorrow.

Left the Infusion Center about 5:45 PM and headed to get a drive-through chicken sandwich for the trip home (135 miles). I slept in the back of Bart and Jani was "driving Miss Jude".

We arrived home about 8:15 PM. The dogs were happy to see us although Olsen's checked on them a couple of times - the dogs are SPOILED ROTTEN. Zoe, Kady, Kemmer (below).

Barring an emergency, we won't have to travel back to Twin Falls until Tuesday, 14 May 2013 when I'll get my blood checked again and see Dr. Padavanija. I'll just have to take it easy so I don't bleed since my platelets are so low. A platelet transfusion (I had 253 ml of platelets today) only last in your system 1-3 days - so, the effect is quite temporary. Without adequate platelets, I am at great risk to bleed. The only bleeding I've had is from my nose and not really a nosebleed - just watering bright red drainage with blowing - need to blow my nose softer.

I read where the "NADIR" (lowest point) for bendamustine is 2 1/2 weeks...so, I'll have decreasing blood values hemoglobin and platelets until around 24 May 2013 (the day I was diagnosed with multiple myeloma 2 years ago in 2011). Without rescue blood and platelet transfusions, I would die. Jani says she is up to taking me for all these transfusions --- so, we're still on the "adventure with my boots on."

Added a post for 9 May 2013 if you want to go back and look at it.

Relapsed High-Risk Myeloma - Waiting for Platelets When You Live in the Wilderness - May 10 2013

Well, my day started very early around 2 AM, when I woke in the middle of dream/real life experience of the WORST calf-cramp that I have EVER HAD. I was yelling in my sleep and Jani heard me. I could barely get out of the bed to stretch it. Got up and drank some dill pickle juice (I HATE IT) and ate 2 little dill pickles. Back to bed with my dorsi flexion boots on and no more cramps - but, my right calf does feel like someone PUNCHED me real good in it. I know, whine, whine, whine....sorry.

I got my dorsi-flexion boots out and on and went back to bed without further incident.

Jani and I drove to Lost Rivers Medical Center in Arco, Idaho (30 miles from Mackay) and had my blood drawn to check my platelets. They are really good there and get me my printed out results within just a few minutes. My platelets were just 19 (considered critically low with norms at 140-440) and I had been instructed to continue on to St. Luke's Hospital in Twin Falls if they were below 20. However, My hemoglobin was great (although low) at 10.1 (norms 12-16). However, I am a bit "out of breath" with walking and climbing stairs despite the 10.1 value. 

Jani drove me to Twin Falls and as we drove, RN Vicki called to say that I probably did not need a platelet transfusion today. I explained that I really wanted a platelet transfusion since my platelets had drifted downward from 33 to 19 in just 48 hours - most probably from my new chemo, bendamustine/revlimid and by next appointment in Twin Falls, Tuesday, 14 May 2013 - I'LL HAVE NO PLATELETS. So, we drove on arriving in Twin Falls at 10:15 AM or so. It is not like I live near St. Luke's Hospital - just 135 miles one way, 2 hr 20 minute drive away. The Lost Rivers Medical Center in Arco does not have the capability of giving me irradiated blood and platelet products, so they are not an option.

St. Luke's Hospital had to order the platelets from St. Luke's Hospital in Boise since I require "special platelets" due to my 2 failed autologous stem cell transplants. This meant that the platelets would NOT ARRIVE in Twin Falls until 4 PM!

So, Jani and I had a full day to FILL with something and we managed to do just that. We started out with an early lunch at Wendy's - we shared french fries - my BEST and FAVORITE comfort food and only the first time I've had them in months and months.

Then, we decided to drive down to the Snake River upstream from the Perrine Bridge.

We discovered that "two worlds" exist upstream from the Perrine Bridge on the Snake River. One is not soooo nice and SMELLS OF SEWER called Canyon Springs Golf Course - a public course. 

Water Falls of apparent sewage smelling water cascade down the canyon walls.

The other golf course closer to the Perrine Bridge, yet still upstream is the Blue Lakes Country Club Golf Course, a private golf course only accessible from the Jerome side of the Snake River.

From the exploration of the two golf courses, we went back to St. Luke's Hopsital to pick up a prescription for me and take to the pharmacy - only to discover the pharmacy was closed for some reason until 2 PM.

So, we decided to to to the famous and beautiful Shoshone Falls not far away on the advice of friends, Shirley and Wayne Olsen. The Shoshone Falls is further downstream on the Snake River than the Perrine Bridge and requires a $3/car fee.

Met a cute, young couple from Antelope, California near Sacramento with the cutest baby boy - couldn't resist a visit with them.

How do you like my Einstein hair????