Relapsed High Risk Myeloma - Update July 20 2013

Woke feeling much better, no more leg cramps, no gut acid, no headache and I did sleep some of the night.

Was able to shower, go get the mail and deliver it to my father. My hair is beginning to look more like it did when I was diagnosed May 2011.

Jani's partner, Robbyn Wacker, arrived in a rental car from the Idaho Falls Airport. She flew here from Colorado and is spending the weekend with us.

The forest fire smoke north of us cleared for the afternoon and we sat on the front porch and then returned THICK for the evening and night. We've ordered a replaced filter for my hepa filter and it should arrive Tuesday...non soon enough!

I spent the rest of the day one-with-my-sofa watching golf and finishing up Part 1 of my Gram's History (Hazel Theora Jensen Anderson Lundberg). She was born in Mt. Pleasant, Utah, married in 1911, and relocated to Idaho after that until her death in 1985. She was one of the finest people in the WORLD and well-loved by all.

Relapsed High Risk Myeloma - Update June 29 2013

Took Ann and Chuck on a very quick Mine Hill Tour in Jonah. Jani decided to stay home. I saw a grey wolf up by the Four Corners area - going zero to 100 in a nano-second up toward old White Knob town. Lots of cows with their calves are up there right now. 

Ann and Chuck Henderson at the Alberta Level Mine opening still has snow in it with very cold air pouring out.

Ann's new camera zoomed from the Smelter Blacksmith Shop down to the Big Lost River with the Mt. McCaleb and Lower Cedar canyon (to the right of Mt. McCaleb). 

We toured the new Hardrock Mining Exhibit at the former Smelter Blacksmith shop - what a nice job with motion detector lights inside making the viewing easier.

Came home and became one-with-the-sofa. Henderson's dog, Sophie, likes to lay right by me on the floor next to the sofa even though all my computer cords are down there.

The inside of my legs from my groin to my feet ACHES. I woke this morning with a left leg cramp and a right foot spasm - oh, my legs and feet are such a JOY ~ I hope I'm not taxing my 28 platelets too much - Ann was good to hang on to me during our touring if it looked like I was was going to tip over. A fall with only 28 platelets would not be good for me!

Jani made dinner and then I took the Henderson's up to the Mackay Dam (reservoir). When full the dam is 60 feet deep and covers 45,000 acre feet. The dam spillway is 65 feet high. Right now it is only about 70 percent full as they are letting water out downstream for irrigation in the Big Lost River Valley.

Judy Malkiewicz and Ann Henderson, RN, PhD at the Mackay Dam 29 June 2013.

Fishing is good on the dam year round and includes: Mountain White Fish; Brook Trout; Kokanee Salmon; and Rainbow Trout.

Water is released from the dam with the control gates shown below. The control gates were repaired in 2006.

Below: This is the downstream area where the water coming out of the dam is released for irrigation water rights.

Below are the outlet tubes when they were being built in 1918. Note the ladies in their dresses on the right (double click to enlarge)

 Public access fishing in the outlet side of the Mackay Dam.

Came home and had a good visit with my neighbor, Lew Pence, who has a summer house across from mine. He grew up here in Mackay (his father and mother had Pence's Market on Mackay Main Street) and I love visiting with him when he makes it up to Mackay from Gooding, Idaho.

Took Henderson's to the Lost Rivers Museum (only open on Friday and Saturday afternoons)...told Ann I could give her a permanent, but she passed on the chance).

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 19 2013

Woke to a much better day as far as I felt compared to yesterday. My gastrointestinal trace seems to have settled down and although not perfect, it will do. My legs, especially my thighs are weak, probably talking to me from my 1 block walk last evening. 

Day 16 of Cycle 2 Bendamustine/Revlimid/Dex.

Was able to drive to the Post Office to pick up the mail and deliver it to my father. Someone stained his front deck and it looks awesome.

Went grocery shopping at Ivies while Jani cleaned and re-organized the garage!

Went to Ladies Aid at 1 PM at the Mackay Women's Club to have the members show me how to trace a pattern on seven t-towels they are going to make for me. I love this group and only a couple of members were absent today.

L to R: Lula Shaffer, Dorothy Schmuck, Virginia Anderson, and Lela Warner, Ladies Aid at Mackay Women's Club, 19 June 2013.

Just before 2 PM, I was driving to the Post Office to mail a package from the Women's Club when I was HIT with a SEVERE episode of what I call "HEART PAIN". I drove directly home (6 blocks) and made it to the sofa where I told Jani "I WAS DYING".  This is the 5th episode of "heart pain" that I've had since my myeloma diagnosis (24 May 2011). At least 2 of the episodes have been witnessed by nurses and doctors at the University of Colorado Hospital in Aurora, Colorado.

1. 19 June 2013 (here Mackay, Idaho)
2. 24 May 2012 (while inpatient at UCH for 2nd autologous stem cell transplant)
3. 18 April 2012 (in Greeley, Colorado at Jani and Robbyn's house)
4. 17 Jan 2012 (here in Mackay, Idaho and Ron took me to Idaho Falls ER)
5. 15 Sept 2011 (while inpatient at UCH for 1st autologous stem cell transplant)

These episodes of "heart pain" are ALL SIMILAR and resemble what I image a heart attack would be like. I have severe pain along a circumference band just below both breasts and radiates up to my right jaw line and teeth. It is terrible pain and takes my breath away. I feel some better if I sit up , but not really. Since I've had 2 of these episodes while hospitalized a the University of Colorado witnessed by the nurses and doctors, I sort of know what to do when it happens. In those episodes, they worked me up heart attack with EKG, heart ultrasound, lung CT Scan, and blood tests and everything was normal. 

Jani gave me:

1. Famiciclovir (shingles prevention which was due at 2 PM)
2. Aspirin 81 mg (holding right now for platelets of 33 but decided best to take now)
3. Pepcid 20 mg
4. 1/4 Percocet
5. AND a BIG DOSE - "stay clam Jude, you are not dying"

The entire episode lasted just about 15 minutes and then I was essentially fine, but TIRED with creepy legs.

I remember reading on the Multiple Myeloma Beacon (http://www.myelomabeacon.com FORUM section about other myeloma patients experiencing similar episodes when taking Revlimid and being treated in emergency rooms, only to be told nothing was wrong with them. Here is the link: http://www.myelomabeacon.com/forum/chest-pain-as-a-side-effect-of-revlimid-or-velcade-t1700.html?hilit=chest%20pain

I liken these "heart pain" episodes to something VERY SIMILAR to the spasms and cramps I get in my legs at times. Terrible spasm pain followed by aching pain followed by "normal" (whatever that is). But with the "heart pain", there seems to be little I an do to "stretch" the pain away. It is SCARY and PAINFUL.

We had rain off and on all day with cooler temperatures in the low 60s. Lots of new snow on Mt. McCaleb above Mackay, Idaho this evening. This is NOT unusual for Mackay and I've got photos of new snow as late at 24 June in 2003. We are expecting freezing temperatures tonight, so Jani lugged all of the porch plant in to the garage tonight.

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.

Throw You OUT OF BED Leg Cramps - April 24 2013

THEY'RE BACK - those 'throw you out of bed leg cramps" in my calves. Woke me at 12:30 PM and I thought I was going to be crippled for the rest of my life. Found my dorsi-flexion boots in my closet and the rest of the night went well. I'm not on any chemo just Dex 10 mg every other day, so, I'm not sure where the vice-like cramps came from. I've had suggestions to drink a little pickle juice to control them - but, nothing works better than the brace - that is - if you have it on.

Walked Kemmer this afternoon. I was probably overdressed in my down jacket since it was 55 degrees with no wind.

I'm busy SCANNING SCANNING SCANNING genealogy files that my grandmother and mother left me. I've practically moved my entire office into my living room. I've made several contacts with relatives that I've never met and I'm send it all off to them. 

Summary February 1 to February 5 2013

Feb 1 2013 (Friday): Walked Kemmer 0.82 miles.

Saw a not so lucky porcupine along side the road. They are really cute animals.

Feb 2 2013 (Saturday): Walked Kemmer 1.32 miles to the Big Lost River Smelter Bridge. I had upper back pain across my scapula especially on the right side, so I took ½ Percocet, which really helped. I haven’t taken any Percocet since 20 Dec 2012 when I needed it for my post- Bard Power Port placement. Plain Tylenol has been helping adequately with my leg and back pains. I decided to hold my Fragmin injection, which probably wasn’t a good idea. I took ½ Imodium because I am back on Revlimid 10 mg (Day 4/21) and it always gives me diarrhea.

Feb 3 2013 (Sunday): Walked Kemmer 0.82 miles. 

I took ½ Percocet twice for leg pain and “creepy legs”. Started back on the Fragmin 15,000 units injection. I can take 10 mg of dex on Sunday’s and I decided not to take it since I was able to maintain my walking schedule. I had a little bit of chest pain, especially on the left side, which I attributed to stomach acid. I took Pepcid and felt better even though I take Zantac and Prilosec twice daily on a regular basis. My stomach is ALWAYS a bit upset.

Feb 4 2013 (Monday): Didn’t walk Kemmer today because I used all of my available energy to help at the Mackay Food Bank – filling boxes. I wore gloves and mask the whole time – but, I kept up with everyone. I can't believe they haven't fired me since I've missed so many months.

I decided to take just 7,500 units of Fragmin today since my abdomen is one bigger bruise than it usually is from the injections. I took ½ Percocet twice again in the 24 hours for leg tightness, but I’m sure I do not need it.

Feb 5 2013 (Tuesday): Decided not to take any more Percocet for the time being. I walked Kemmer 0.82 miles. 

Stopped to talk to my neighbor who is here to ice fish on the Mackay Dam…always enjoy our visits.

Used my available energy to vacuum part of the house after a friend carried my inversion table upstairs to get it out of the way. Spent a fair amount of time one-with-my-sofa. In fact, my sofa is a big part of my life every day!