Relapsed High Risk Myeloma - Update June 24 2013

During the night I had left hand cramp spasm...hard to get rid of it and finally wrapped my hand in the heating pad, which helped. Worried most of the night that I would NEVER be able to type on my computer again - but, it finally went away.

Woke and showered...felt pretty good and then I just FELT TERRIBLE for the rest of the day. Terrible gastritis, shaky, brain wasn't working well, some dizziness, and my resting pulse seemed stuck at 102 or so. Just laying on the sofa, doing nothing, had sustained pulse of 98 to 102 with shaky hands.

Today was a Dex 10 mg day and I took it after breakfast - didn't help me feel any better. 

Jani drove Sare to the Idaho Falls Airport for a mid-day flight back to DIA in Colorado where they have a mountain cabin - they (she and Randy) live in Hawaii. It was nice to share my corner of the world with Sare.

Then, Jani went shopping in Idaho Falls and didn't get home until around 3:30 PM. I was still feeling ROTTEN and went to bed. My resting pulse had fallen to around the mid-80's.

All I can figure out, is that I OVER DID it at the rodeo parade and rodeo Saturday and tour of the Mine Hill on Sunday and I PAID THE PRICE today. I had creepy legs all day.

About mid-day, my neighbors turned 16 of their horses out in the pasture behind me. I love watching them.

Relapsed High Risk Myeloma - Update June 21 2013

Up to YELPING SCREAMING (yes, that was my voice) spasm cramp in my left calf at 5 AM despite wearing my dorsi-flexion boots all night in bed.. Jani came running to help me get out of bed to stretch it.

Another cold morning with new snow on Mt. McCaleb. WHERE IS MY SUMMER on this first day of summer 2013????

Went to the Post Office for the mail and did my almost "daily" (sometimes, twice daily) shopping at Ivies. Visited with my father for awhile when I delivered his mail. He sits at the kitchen table every morning and reads the Idaho Post Register cover to cover and does the crossword puzzle. Then, he rides his exercise bike for 33 minutes EVERY morning...he has not missed a day since I was diagnosis backed in May 2011.

Jani cleaned the whole house and we picked up for our next visitor - Sare Stoddard from Hawaii via Colorado who was flying in via DIA later this afternoon.

While Jani drove to Idaho Falls Airport (100 miles in 1 1/2 hours), I unloaded and loaded the dishwasher and made copies of the Old Mackay GRADES 1-12 School that served Mackay from 1903-1967 to sell at our museum.

My energy level is pretty good, but I have to walk slowly. My resting heart rate is now in the high 80's, but I'm not really out of breath when I walk. My lunch was too spicy and I suffered all afternoon. If my stomach did hurt, I'd feel FINE!

Jani texted Sare's arrival (her plane was more than an hour late for some reason).

Sare and her husband, Randy and I met on 17 May 1972 when I was a student nurse in Denver, Colorado when I was a student nurse in Denver, Colorado. As a student nurse in my Obstetrics  rotation, I had to follow a couple having a baby and then write a paper about the experience. It was very near the end of the semester and I still had not been assigned a pregnant family, so my instructor had me and 2 other student nurses just go to the hospital and wait for someone to come in to have their baby. Sare and Randy arrived to have their first child and our nursing instructor came to the break room and told us that the father (Randy) was a doctor and which one of us wanted to take "them" for our OB experience. In unison, we all said, "NOT ME". So, our instructor (one of the best of my whole nursing education - Mrs. Marilyn Browne) broke 3 toothpicks and held them in her hand had us "draw straws", telling us the short straw had to take "THE DOCTOR" and his wife.

Well, I drew the short straw and the rest has been a wonderful history! Sare and Randy had a beautiful baby girl that evening, "MY BABY". I had to do a home visit for the paper and Sare and I became fast friends! We took baby Stoddard for her first ice cream in my 1971 yellow VW bug - the cutest baby on the face of this earth!

Sare grew up in Hawaii and she and Randy ended up there for their work lives. I was fortunate to visit several times over the years and in return, they visited  Colorado - our friendship has been LONG and WONDERFUL...and "MY BABY" is married pediatrician with two of her own children and a wonderful brother, sister-in-law, and niece. Life if good for Stoddards and for me, for that part. 

And it is great to have Sare here now for a couple days. Randy is waiting back in Colorado before they return to Hawaii. I MISS Randy too!

Finally, Jani and Sare arrived in Mackay.

Jani went to Amy Lou's to watch the boys next door ride the mechanical bull for rodeo.

 Griffin 

Jackson

Relapsed High-Risk Myeloma - Update - June 2 2013

Up at o'dark thirty to get Jeff and Carol on their way back to Colorado. Per usual, we have to meet at Sammy's to see our father for the goodbyes who helps open Sammy's DAILY and makes their coffee. Below, Judy, Jeff, Frank, Carol, and Jani June 2 2013.

And Jeff and Carol are off for 680 miles today!

 I came home for a nap. Still not getting used to "my dex look".

My resting pulse is 92, so I'm pretty sure my hemoglobin has dropped below 9.0. I will probably need a packed red blood cell transfusion on Tuesday, 4 June 2013 when Jani drives me to St. Luke's Hospital in Twin Falls, Idaho for my appointment with Dr. Padavanija, SPEP Blood Test, and beginning of Cycle 2 of Bendamustine. .

Jani cleaned the house and changed the beds. She is such a hard worker.

Walked the dogs slowly around 2 blocks late this afternoon. Kemmer wants to be right by me all the way!

My gait is weak and I'm very careful NOT TO FALL DOWN with only 31 platelets.

On the way home from our walk, I had a long chat with my good friend, John Powers who was out driving in "his office" - his pickup. We call it "his office" because he keeps ALL of his mail in there - junk and good alike!

In 2005, I helped John compile a history of Mackay, Idaho book entitled, "The Mackay I Remember" by John L. Powers. John and my mother, Marjorie Christine Lundberg Malkiewicz graduated together from the Mackay High School in 1942.

Weight August 1 2011

My weight has been fluctuating A LOT. Dr. Moore pointed that to me today. I was 140 (with clothing) at diagnosis and I was 153 (with clothing) July 28 2011. Today, August 1 2011, I was at 147 (with clothing). Since, I they always weigh me with basically all the same clothing on - the 13 pound variance is not due to that.

Although I am active, I'm not nearly as active as I was prior to diagnosis when I walked the Mine Hill in Mackay, Idaho daily and either shoveled snow or did yard/house work. However, my resting pulse prior to diagnosis was around 56 or 58. Now, with multiple myeloma on board, my resting pulse has zoomed up to 71. So, I'm burning a tad more just resting. My diet has been pretty varied since diagnosis thanks to Jani and Robbyn who cook dinner almost every night with a protein and veggie. I doubt seriously that ANY of those added pounds are from calorie intake. So, that leaves GI (gastrointestinal) and GU (genitourinary) retention and variability as the culprits.