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 12 2013

Woke with renewed energy and clearer thinking - guess, 1 unit of packed red blood cells is just what I needed yesterday!

My resting pulse has dropped from the high 90's to to the low 70's.

Worked on sorting through more paper files - how does one collect so much???

Had a busy day of errands. 

I stopped by the Mackay Library to chat a moment with Librarian Shirley Olsen right in the middle of Summer Reading. Our little library was OVERRUN with 32 children. I decided to wear my N95 mask while I was in there and I'm sure the children thought I thought it was HALLOWEEN! So neat to to see so many families taking advantage of the FREE Summer Reading Program. I only stayed a moment to schedule an appointment with Shirley's husband, Wayne for this evening.

Stopped next door (same building) and visited with the ladies from the Ladies Aid group who make and sell embroidered t-towels for their fund raisers. There are going to make a set for me from a 1950's vintage pattern I found on the internet.

Jani and I finished up the Mt. McCaleb Cemetery Book updates for 2013. Jani printed out the copies and I delivered them to Mackay City Hall where one copy is kept.  Wayne Olsen will be taking over the cemetery book duties for me and we met with him. I am assured it will be be a seamless transition. We took the other book to the cemetery Smith Kiosk building where it is kept.

I have been building the cemetery book for more than a decade (11 1/2 years). I was so naive when I began...thinking it was more static project than it is. I began by walking the Mt. McCaleb Cemetery and taking photos of  ALL > 1,400 existing headstones. Then, I'd add each person represented by the headstone to http://www.findagrave.com which is a wonderful internet asset for genealogy. This was a LABOR intensive process and I did it for several local cemeteries with Mt. McCaleb Cemetery being the largest and where my relatives have been laid to rest. At any rate, I learned that burials continue and headstones may or may not follow 3 to 6 months after the burial - hard to keep up with. However, I have LOVED this project and have done my best. I am thankful for all the help that Jani and Robbyn gave me this year.

The other cemeteries that I photographed headstones for and added to findagrave have been:

1. Mt McCaleb Cemetery
2. Chilly Cemetery
3. Barton Flat aka Barton Cemetery
4. Clyde Cemetery (Little Lost Valley)
5. Howe Cemetery (Little Lost Valley)

Lana Pehrson and I have been working on adding

1. Lost River Cemetery (Moore)
2. Hillside Cemetery (Arco)

Went to the grocery store (Ivies) and saw one of my favorite little guys, Kooper Hainline; 

Went for gas for Bart and there was literally a traffic jam at the Chevron which is so unusual. Gas prices are up to $389.9.

Then, on to the Post Office to mail giant boxes of photos to my Uncle Edward Auer's wife's family (I had scanned the photos that I wanted). Delivered my father's mail to him at is house;  to the US Bank to get some cash; and stopped in the road to talk to Beckie Hanni about putting US Flags on the veteran's graves next Memorial Day 2014 with the help of Wayne Olsen.

Home for lunch. Jani was cleaning the garage. Everything in my HUGE oversized 3 car garage is located where it is because of Jani - she and my father built the storage shelves when I first moved in and did all of the organization. Jani was born with an "organizational gene" that skipped me and probably 98 percent of the total world's population! Everyone thinks I have a huge house, but that's only because my garage is larger than my house!

Back to Ivies for bread...Jani made bacon lettuce and tomato sandwiches for dinner. Saw my favorite Marinac's, Auntie and Kobe.

.

Short nap and then I worked on my computer files for awhile before we went over to the Olsen's to transfer the cemetery book project.

I haven't had a busy day like this for weeks and it felt so good to feel so normal...even if I am still so swollen from Dexamethasone. I'm sure a lot of people don't even recognize me. This is called Cushing Syndrome - swollen facial cheeks, distended abdomen and a 40 pound weight gain --- joy for any woman - NOT.

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.

That Happy Worn Out Look - January 17 2013

My worn out, anemic, steroid look with my wicky hair that won't do anything but this. My hair is not falling out - it is just WILD. Despite "the look" I was able to get most of the house vacuumed today and run errands around town (in a N-95 mask). No nadir (nap) today either. My neighbor, Lew Pence, finished shoveling my driveway snow today - at last I think it was Lew or one of his brothers. They have been ice fishing EVERYDAY.

I also have a small lesion growing on the end of the forehead laceration I got last July 2012. It is firm and non-painful. I noticed it about 3 weeks ago.

You might remember the laceration I received when I fell walking on the Mine Hill 20 July 2012.

I had to wait around at home for the FedEx delivery of my next Revlimid Cycle 4 to begin 30 Jan 2013. The delivery finally came around 12:30 PM and then I was out and about on my errands.

Good Day - November 1 2012

Feel pretty well - just tired in the afternoon and evening. Day 3 of Revlimid 10 mg (21 days on and 7 off) and 1 day post 2 days of Carfilzomib (1st Cycle).

Walked Kemmer on the Mine Hill 1.0 mile. 

My face is so swollen from dex (steroids).

When we got home, one of my young neighbors came to the fence for a visit.

Mayo Clinic Scottsdale called and I'm set for my 2nd Opinion appointment during the week of Thanksgiving.

2nd ASCT - Day 137 - October 2 2012

Checked in on my father early and to put his compression stockings on...if it weren't so TRUE, it would be FUNNY - getting those stockings on him was a nightmare. I sat on the kitchen floor for more than 15 minutes pulling and struggling to get them on. I do NOT have the strength to stretch them sideways to get them on his foot and over his heel. Grunting, groining, and huffing, I finally got them on him. I'm going to have to find a better solution of this daily task!

Drove to St. Luke's Hospital MSTI in Twin Falls for my 10:20 AM appointment. Saw a whole herd of antelope just of the road before the Craters of the Moon National Park.  Technician Anita drew my blood on the first poke - she is very good and uses a small butterfly needle and a light tourniquet. I didn't have to wait long and was taken back to the Infusion Area with RN Brittany. 

My lab values are good;  my white blood cells are low, but okay at 3.7 (norms 4.5-11); my hemoglobin 12.9 (norms 12-15); and platelets 202 (norms 140-440). 

I start Zolinza (vorninstat 400 mg daily for 14 days today, so I can expect that my lab values will be decreasing for next week's blood draw on 9 Oct 2012.

My creatinine (kidney function test) was high at 1.12 (norms 0.52-1.04) which I do NOT like. However my BUN (the other kidney function test) was norm at 12 (norms 7-17). I was careful to arrive at my appointment today hydrated, drinking 1,500 ml before I arrived which necessitated a stop in Shoshone to use the bathroom on the way. In fact, I've been staying hydrated all week.

26 Sept 2012     2,750 ml
27 Sept 2012     3,250 ml
28 Sept 2012     2,500 ml
29 Sept 2012     3,000 ml
30 Sept 2012     3,500 ml
1   Oct  2012       3,250 ml
2   Oct 2012        4,000 ml

My LDH was high at 710 (norm 313-618). My LDH last month before I started Zolinza was 661. I'm not sure how to interpret the LDH, but I don't think higher is good~

My AST (liver function) was slightly high at 37 (norms 14-36), so, I'll be watching that too.

They drew my SPEP (includes the M-Spike); immunoglobulins, Beta-2 Microglobins and sent a urine for protein today. These tests need to be sent to Boise and will not have the results for several days. It is hard to wait for the M-Spike results, but wait I must.

I took this photo with my iPad to show how much the steroids are puffing my face (Cushing facies) and giving me facial hair (hirsutism) - Who needs hair on their head when they can have a beard???

And is my practice, I wear my hiking boots to EVERY appointment - after all, this IS AN ADVENTURE~ 
While I waited, they gave me lunch (a turkey sandwich). RN Brittany gave me my subcutaneous Velcade and I was on my way home before noon for the 2 1/2 hour drive home to Mackay.

Checked on my father when I got home and the compression stockings were too tight on the left leg at the knee, so with great effort, took them off. Evidently, I pulled them up too tightly when I put them on this morning. With his arterial stents, this is NOT good and I will try to do better tomorrow.

Came home for a wonderul 1 1/2 hour nadir on the sofa. Then, I gave Kemmer a ride on JackRed (4Wheeler) to the grocery store so I could pick up a few items.