Relapsed High Risk Myeloma - Update July 22 2013

Woke this morning after a restless night and could not breathe out of my left nasal nare at all. I, VERY GENTLY BLEW my nose and a huge wet blood clot emerged. It was about 2 inches by 1 inch and 1/4 inch thick. WALLA, I could breathe instantly and no new bleeding!

Jani and Robbyn drove me to the Lab at Lost Rivers Medical Center in Arco, Idaho to get my CBC as scheduled. My platelets were MISERABLY LOW at 9 (as low as I have ever had). The report said "Critically Low" and they called the value in to St. Luke's MSTI. They reported the value to physician, Banu E Symington, MD that covers for my oncologist, Dr.Padavanija who does not work Monday's and they decided I could wait until Thursday to have my platelet count rechecked on Thursday in Twin Falls, Idaho. I need "rescue platelets" to stay alive and that is obvious, but will just rest quietly until then.

Robbyn's departure photo from Mackay to Colorado. She is driving a rental car to the Idaho Falls Airport and then on to DIA in Denver to pick up her car at the longterm parking there. We will miss her!

Jani and her iphone apps - CUTE!

Spent the rest of the day on the sofa and had no new bleeding from my nose or throat. Unfortunately, the Z-Pack antibiotic (which I started 18 July 2013 and completed 22 July 2013 didn't completely knock my sinus infection and I'm going to request a refill Z-Pack tomorrow. I still have brown-green sinus drainage, but not that much now. My left front sinus is completely encased and cannot drain without surgery and right now I am NOT a surgical candidate with a platelet count of just 7.

Relapsed High Risk Myeloma - Update July 18 2013

Just at morning twilight, I saw Maynard's cow and 2 calves chasing a female moose from the middle of their field behind me toward the river willows. They were really going FAST!

Andrea Marinac is watching our pups with her little Koko. Here she is with Zoe.

Jani drove me to Twin Falls, St. Luke's Hospital MSTI this morning. I slept most of the way in the back of Bart. I had awakened with a headache and a left sinus pressure and drainage. I took my 10 mg of Dex orally before I left home.

RN Leita drew my labs out of my Bard Power Port. Then, we waited in the examination room for our appointment with Dr. Pandavanja. My lab values have improved slightly! My wbc are 3.8 (norms 4.5-11); ANC 2.29 (norms 1.9-8.8); hemoglobin 11.2 (norms 12-1); platelets 17 (norms 140-440). So, an increase of 5 platelets is very good news for me!

My kidney function tests are a tad off with creatinine at 1.07 (norms 0.52-1.04); high BUN at 26 (norms 7-18) and GFR only 55. So, I have some type of kidney failure.

I received my intravenous dose of carfilzomib with a pre-treatment of Kytril with pre and post fluids. I spoke with Pharmacist Dave about the Kytril and he thought it best I get some.

We discussed with Dr. Padavanija not to increase the carfilzomib dosage from the original metered square dosage and I was in a agreement. Dr. Padavanija ordered a Z-Pack antibiotic for my sinuses and we will pick those up at the pharmacy on the way to check in to the motel later this afternoon.

The intravenous Kytril (anti-nausea) push medication made me very tired. I knew it would! I react to almost all medications. We went to Walmart and wandered around...I was fine if I held on to the cart handle. Jani had a list and we FOLLOWED IT!

Checked in to the motel where the air-conditioning was comfortable since it was nearly100 degrees outside in Twin Falls. We both had nadirs and went to Taco Bell drive-through for dinner.

Jani sat in the motel hot tub and then went to McDonald's for some soft-serve ice cream for us. I took my Zantac and Prilosec and was off to bed. My guts are burning some, but not that badly.

Relapsed High Risk Myeloma - Update June 28 2013

Slept better...hope this is a trend. Up early to make coffee for the Henderson's and feed the dogs.

My stomach is markedly better this morning. I'm on Day 2 of the Zithromax antibiotic for my sinuses. My bone marrow site from 26 June 2013 is a tad sore and I have avoided lying on that side.

Ann and Chuck went on a walk around town before breakfast to celebrate their 33rd Wedding Anniversary. 

Took Ann and Chuck with me to get the mail at the Post Office, tour the Western Store (our answer to "Walmart", and the Mountain Gem Gift Shop located in Oxley Bakery.  On to Ivies for a few groceries. At our house, no day is a "real day" without a trip or TWO to Ivies.

Delivered the mail to my father where the Henderson's visited with my father for awhile in the kitchen.

Back at home, Jani made potato salad - she's an EXPERT now with our M's recipe.


Ann has a new camera and can zoom in on the Mine Hill Headhouse from my front porch.

 The horses are still behind my house and delightful to watch.

 I am still the "michelin-tire" swollen myeloma girl.

Chuck Henderson and Me on the front porch early this morning.

Jani, Chuck, and Ann went golfing at the 9-Hole River Park Golf Course. 

It was nearly a 100 degrees and they cooked, but assured me they had a wonderful time. They used our father's golf cart which we call the MackayTownCar (gas driven vs electric).  Chuck Henderson in the MackayTownCar.

Chuck Henderson and Jani Malkiewicz paying green fees at the River Park Golf Course with McKenna Mangun.

 The 33-year anniversary couple on the golf course with Mt. McCaleb in the background.

Jani golfing - she LOVES golf and is quite good at it - she spent 8 years as an LPGA Teaching Professional, so she knows her golf.

I stayed home and did what I do best these days - became one with my sofa and worked on labeling photos taken over the last couple of days. I also cooked the pork ribs for dinner while they were golfing. Even though I had 2 units of packed red blood cells on 26 June 2013, I'm sure my hemoglobin isn't much higher than 9 (low norm 12), so energy is not readily available right now.

They came home from golfing around 4:30 PM and we had a delicious dinner of homemade potato salad, corn on the cob and pork ribs finished up on the barbecue with barbecue sauce.

Around 9:30 PM with a temperature outside of nearly 96 degrees, we had a "dry rainstorm", but we ended up with a beautiful rainbow.

 Plus, the little boy mule deer were out in groups tonight.

Relapsed High Risk Myeloma - Update June 26 2013

Up at o'dark thirty to depart at 4:45 AM (that's early folks) for St. Luke's Hospital in Twin Falls, Idaho. I slept the whole way there while Jani drove. Was pretty much out of breath as I walked from the parking lot to the Infusion Center.

Had my labs drawn from my Bard Power Port as soon as we arrived just after 7 AM in the MSTI Infusion Center. Drew CBC, Chem Panel, LDH, and SPEP.

Then off to Interventional Radiology for my 12th bone marrow biopsy since diagnosis (24 May 2011). 
Bone Marrow Biopsy History:

1. 24 May 2011 (Diagnosis, Dr. Moore in Ft. Collins, Colorado; traditional trocar)
2. 20 Aug 2011 (1st at UCH with Glen, NP; traditional trocar)
3. 1 Sept 2011 (Karley, NP, UCH, traditional trocar)
4. 2 Nov 2011  (Karley, NP, UCH, tradition trocar)
5. 9 Mar 2012  (Karley, NP and 1st with OnControl Driver, UCH)
6. 3 May 2012 (Shannon, NP with OnControl Driver, UCH)
7. 12 July 2012 (Trish, NP with OnControl Driver UCH)
8. 17 Oct 2012 (Angela, NP with OnControl Driver UCH)
9. 20 Dec 2012 (Kirk Peterson, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
10. 20 Feb 2013 (Kirk Peterson, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
11. 26 Apr 2013 (John Gray, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
12. 26 Jun 2013 (Kirk Peterson, MD. St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar

RN Mendi was there to greet Jani and I. My tongue was so DRY and STUCK to the roof of my mouth from being NPO (nothing by mouth) since midnight that it was difficult to articulate. 

My CBC and Chem Panel results came back and and were all LOW.  White blood cell count low at 1.8 (norms 4.5-11); ANC (absolute neutrophil count) low at 1.18 (norms 1.90-8.8); platelets LOW at 28 (norms 140-440); and hemoglobin REALLY LOW at 7.3 (norms 12-16) - no wonder I was out of breath with the walk from the parking lot to the hospital.

My LDH was 1040 which was down from 1349 (norms 313-618) which I'll take as a good sign!

My SPEP results will take a week, although, I'm pretty sure I'll be able to get my M-Spike result by this Friday, 28 Jun 2013.

My Chem Panel wasn't too bad, still showing mild kidney failure with a creatinine of 1.09 (norms 0.52-1.04); BUN 18 (norms 7-17) and GFR 54 (norm greater than 60).

RN Mendi had to make a number of phone calls to determine if I was going to have the bone marrow biopsy 1st, followed by 2 units of blood transfusion or the blood transfusion followed by by the bone marrow biopsy. 

Kirk Peterson, MD Pathology decided to do the bone marrow biopsy first under conscious sedation (5 mg Versed and 100 mg  Fentanyl). 

Then send me back to MSTI Infusion Center via a wheelchair for 2 units of packed red blood cells transfusion and 10 mg of lasix. I was drugged from the conscious sedation and napped off and on while I got my blood. The 10 mg of lasix helped to reduce my "michelin tire look".

I'm pretty sure my left frontal sinus infection is back, so the nurse called Dr. Padavanija and got a Z-Pack prescription for me which I'll start tomorrow.

Jani went shopping with a long list at several stores.

We left Twin Falls at  3:45 PM. I felt AWFUL...every bone in my body stiff, headache, terrible burning gastritis, and sleepy. It was a Dex 10 mg day and I hadn't taken it until I got home. As much as the Dex swells me up - it does help my aches and pains. Plus Dex actually treats myeloma. Went to bed feeling ROTTEN ROTTEN...Jani checked on me several times.

My GI tract is in the rapidly south mode and I took some Imodium.

History of All Blood Transfusions Since Diagnosis May 24 2011

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

Relapsed High Risk Myeloma - Update June 15 2013

Despite a platelet count of just 28 (norms 140-440), I decided I could ride JackRed2 (my 2012 Honda Rancher 4-wheeler with power steering and independent rear suspension) carefully around town with Jani (who rides a 2004 Yamaha Bruin 4-wheeler). We both have deluxe padded racks on the back so we can take the dogs with us. Both Kemmer and Zoe LOVE riding along on the 4-wheelers!

My photo op position taking pictures of Jani and Zoe. Jani had to help me get up because my thigh muscles are so weak.

Kemmer and I with Mt. McCaleb (11,427 feet) in the background. Many people climb Mt. McCaleb yearly, but I have never attempted it.

Afterwards, we stopped across Main Street from Ivies (grocery) in front of the former dental office in the shade. I ran in to Ivies for canned beets and an onion for our dinner. 

Kemmer on JackRed2 with Zoe resting on the sidewalk.

Came home and had a two hour nap while Jani watched golf on television. In fact, I had a series of naps all afternoon and went to bed at 7 PM - guess, I'm TIRED. Jani walked the dogs around the block.

My left frontal sinus is still somewhat of a bother - but, I  have not had a headache pain in the area today. My guts don't seem to be working of late...but, I'm not as distended as I have been in the past.

Relapsed High Risk Myeloma - Update June 13 2013

Still feeling the energy effects of my extra red blood cells, I drove my father to Bingham Memorial Hospital in Blackfoot, Idaho (85 miles each way) for a follow-up ultrasound of the arterial stents in his groin and legs. 

I did lots of waiting in the car and we were gone all day.

Thankfully, Dad's stents are still open allowing blood flow to his lower legs and feet.. There has been some narrowing in the stent area flow since his last assessment 6 months ago. Dr. Shelley will want to check the stents again in 5 months or sooner if he has any PAIN. If the stents have narrowed further or meet some number Dr. Shelley measures on the ultrasound, Dad would have to have another procedure done around mid-November 2013. Before the arterial stents were placed, Dad had swelling of the lower legs and feet which we thought were congestive heart failure - not the case. The arterial stents have solved all of the lower leg and feet swelling.

We were back in Mackay by 4:30 PM. I was very tired, had some dinner and and went to bed at 7 PM. I have a pain in my left frontal sinus area - hopefully, it is not infected again. No nasal drainage, so it is hard to tell. Could be from the blood transfusion.

Today is Day 13 of Cycle 2 Bendamustine/Revlimid 5 mg/ Dex 10 mg every other day.

Relapsed High-Risk Myeloma - Update - May 23 2013

Woke in the night with a TERRIBLE, NO-GOOD left calf cramp - YELPING LOUDLY enough for Jani to hear me. I had my dorsiflexion boot on the wrong leg - although, I have 2 boots, so should have had both on. Continue to sleep better, but my left calf feels like it is at least 1 year shorter. I finished Day 3 of the Z-Pack antibiotic for my sinus infection today.

Don and Charlotte McKelvey dropped off two petunia plants for my front porch - so pretty and sweet of them to think of me!

Drove to town (4 blocks) and got the mail at the Post Office. Delivered it to Paco (my 92 year old father) and had a nice visit with him and his helper, Gretchen Lawrence, at the kitchen table. On the way home, visited with a friend, Ellis Reay, as he headed from the grocery to the Post Office.

Stopped at the Mine Hill Grill (photo below from Feb 1 2011) located on the corner of Main Street and Highway 93 in Mackay, Idaho.

and picked up a take home hamburger made by cook, Vesta Rogers.

Jani headed to the Idaho Falls Airport (100 miles each way) to pick up her partner, Robbyn who came from Colorado for a couple of days. Crossing the desert with the Twin Buttes in the distance - VERY WINDY with jet stream close to the ground.

Click on the photo of Robbyn's plane twice and you can see it at the end of the red arrow.

Jani and Robbyn stopped at Paco's house to say HELLO before they came to my house. I'm so lucky to have so many who want to visit me.

Then, Robbyn, Jani, and the dogs took a walk on the Mine Hill. It was a little chilly and windy up there. Mt. McCaleb and Lower Cedar Creek pictured below.

Robbyn with 12-year old Kady (white mouth), Zoe (behind her) and my Kemmer in front. I wasn't there as I was one-with-my-sofa with my 35 platelets...darn it!

Our Mom sent Jani a penny on the BLM Road South above the Cattle Guard this afternoon.

This is a grazing year for cattle on the Mine Hill. Must be ample to eat, because they are producing LOTS of cow patties!

A rain squall over Lower Cedar Creek on the opposite of the valley from the Mine Hill.

 Mule deer in the Halverson and Palmer fields this evening, May 23 2013.

I wrote an email to Clay Smith, MD at the University of Colorado to let him know that I was still alive and explained my current treatment plan at St. Luke's Hospital, Twin Falls, Idaho.