Relapsed High Risk Myeloma - Update August 4 2013

Had a some better day today. Jani and I walked the dogs up and down the block early stopping to visit with neighbor, Teresa Harding. My knee pain seemed to be totally gone, but I still have some shortness of breath with walking. My oral thrush is gone and my mouth feels normal again. I still have some in my esophagus, so I took another fluconozole pill.

Teresa and her husband, Randy found an old poster when they bought the Pilash place.

Jani took a photo of it, "My Little Chickadee" with Mae West and W.C. Fields put on locally at above Chilly at Dickey above Mackay, Idaho (that's just over 20 miles from Mackay. Life before television and all the technology that we have sure made things interesting and a lot of people participated. Poster Date Unknown. From the Tom Pilash Collection.

Talked to  Scott Johnson on the phone...even without seeing his grin - he makes me smile.

I didn't have the energy to go to the last day of the Custer County Fair, but Cora Lockie brought my apricot jelly by along with my red ribbon - someone should really figure out a craft idea that uses all those fair ribbons as I'm sure every household in the area has PLENTY. Cora visited for about an hour and I loved hearing about her grandkids and great-grandkids. Earl was on the Mine Hill giving a personal tour to a BLM administrator. 

I watched golf all afternoon even though Tiger Woods was so far ahead...with a short nadir here and there between holes and even during holes. I also walked around the house for 5-10 minutes each hour too - too much one-with-the-sofa. 

We had Jeff and Dad over for a taco dinner tonight - Jani makes the best homemade tacos.

Wished Shirley Olsen a Happy Birthday today. She's the best and spent her birthday in Twin Falls, Idaho with family.

Relapsed High Risk Myeloma - Update August 3 2013

Had a ROUGH NIGHT with new symptoms - both of my knees just THROBBED IN PAIN and I had a difficult time walking. It was like the spasms I get in my calves had settled in my knees. I finally had to take a Oxy pill which helped a lot. I couldn't get Jani with the texting, so I just yelled for her and that didn't help either, so I just calmed myself, which is sometimes hard to do.

My mouth, tongue, and esophagus were BURNING ALL DAY - nothing seemed to help until I realized that I most probably had thrush. I took a fluconazole (anti-fungal) and almost within an hour felt better. I've been eating too much CANDY, and just finished a Z-Pack antiobitic for my my left front sinus...so, it is no wonder.

Watched golf all day.

Jani did the weed eating of the lawn and then mowed. This place is looking just great.

2nd ASCT - Day 138 - October 3 2012

My usual rotten, never more than 2 hours at time, sleep is back. Waking to left foot and leg neuropathy burning and/or to pee. I took a plain Tylenol and that helped some. I finally just got up at 4 AM rather than flip-flop around in bed AWAKE.

My tongue was all coated early this morning, so I took a fluconazole and it seems much better this morning. My taster is going, but still working some - Zolinza side effect.

Went early to put my father's compression stockings on - a tad easer today - but, still a struggle. I take him tomorrow to the Interventional Radiologist in Blackfoot, Idaho to be get his (HOPEFULLY) last evaluation on the arterial stents that have been placed via ultrasound, followed by a meeting with Dr. David Shelley. We are going to ask Dr. Shelley if the compression stockings are okay to use in light of the arterial issues. If he says  yes, I'm going to buy a couple of aids to getting compression stockings on and off. With the neuropathy in my finger tips - it will be necessary. I don't have much pain in my finger tips, but I do have numbness making some fine motor activities very difficult - like opening a zip-lock baggie.

I walked Kemmer on the Mine Hill 1.38 miles. We had a cold spell hit today and it was about 51 degrees compared to almost 80 yesterday - with gale force winds from the north - bringing in more forest fire smoke. So, I wore my jacket and N-95 mask.

My old friend, back pain across my scapula returned today while I walked - but, I just kept going.

2nd ASCT - Day 113 - September 9 2012

On the myeloma side, the neuropathy in my left leg is maybe getting worse and keeps me awake at night. It seems to be radiating up my leg more - even to the groin. Begins on the bottom of my foot like I stepped on a hot iron and travels up just the back of my calf to the back of my knee - and last night to the right inside groin area. I also have thrush in my mouth and continue to take fluconazole which is helping.

Had a nice steep walk this morning on the Mine Hill with Kemmer. 

I misgauged how long it would take me to get in camera focus via the timer that I use each day without falling down and had to do the photo shoot twice :)

On the way down from the 2.40 mile hike, we met up good friend, Dianne Layne Parker again (our grandmothers were long friends). Click on the photo below to enlarge, so you can see Dianne making the ascent to the BLM Road South ridge. It is hard to judge distances in this wide open country.

My new gate closure today ala Ron. It is first-class. We had to enlarge the gate opening earlier in the summer to allow for a mower to fit through.

And my new rain gauge - not that it is going to rain - but we NEED RAIN - so, it might help to have a gauge up. The wind was blowing this afternoon from the south, so the forest fire smoke up north was hardly noticeable.

Friends gave me fresh garden produce today - yummy.

2nd ASCT - Day 112 - September 8 2012

Well, after a total exhaustion during the afternoon and evening, I essentially slept from 3:30 PM in the after noon until 2 AM 
I woke this morning rested and ready for LIFE. And such a varied day I had! 

Started out with an early morning walk on the MIne Hill with Kemmer. We met up with friend, Dianne Layne Parker. We walked 1.38 miles and had a good visit. Our grandmothers were very good friends, Hazel Lundberg (mine) and Pauline Chaney (Dianne's).

After the walk, I rushed to the Post Office to get my father's mail and do his dishes which I do every morning. Then, on to the Custer County Fair Grounds here in Mackay, Idaho for the Gordon Seefried Memorial Benefit Consignment Auction to raise money for the Mackay Elementary School new playground equipment to be installed and Field Trip support.

Here is the $32,000 dollars of playground equipment that Mackay received a via a grant. However, we do not have the money to install it. Any donations would be appreciated. Send to Mackay Elementary School, 400 E. Spruce, P.O. Box 390, Mackay, Idaho (this is the only ad you will ever see on this blog, I promise).  See the school website at: http://www.mackayschools.org/msd_015.htm

From there, I hurried home to change clothes and attend he funeral of a wonderful man, James Clyde Lambert, 91 at the LDS Church here in Mackay. Clyde and his wife who has also passed away were good friends with my mother, Margie Lundberg Malkiewicz. I clean up okay ~ what  a granny dess though ~

Clyde Lambert's memorial table display.

From there, I went target practicing with my pistol with Ron.  Don't worry it is not loaded.

 I even managed to hit the target at 20 yards a few times (see beige target).

Horses waiting for water to be delivered. But, you can see the fire smoke has cleared this afternoon for awhile.

And I took some photos and printed them for the local tree trimmer to send along with his bill.

This job just required removal of dead branches and not much of a trim. Finished below.

Below, a part of my acre...I need a tree trimmer too...but the trees and willows are a wonderful habitat for mule deer, racoons, skunks, voles, and the occasional mountain lion and wolf.

PS, I think I was getting thrush from the Augmentin, so I started Fluconazole last night. My tongue is less sore today and much better - the marvels of pharmacy. The burning neuropathy in my left foot and leg remain BURNING. I may have to ask for a Velcade dose reduction. My post shingles back pain is much better.

Somewhat Better Today - January 21 2012

My cold and dripping nose continues, but I feel somewhat better. I took only 1/2 Claritin today and continue with the Augmentin. Took 150 mg of Fluconazole. We had new snow overnight. My neighbor, Gale Lords, came over and plowed my driveway for me...so nice!

I love the new snow. I went over to my father's house and shoveled his walk for him. Here is a photo of Mackay Idaho Main Street at 11:15 AM this morning....hopping busy???

Pharmacy Mission for Discharge Prescriptions tomorrow completed August 26 2011

Faye Hummel had to go down to the University of Colorado Hospital Atrium Pharmacy twice with my long list of discharge medications, but she "gotter done". I wanted to get this all lined up before tomorrow which is Saturday and everyone knows things are harder on the weekend.

The Pharmacy did not initially have all the orders, but after a trip upstairs and the help of Nurse Kelly and Pharmacist Jeff, the orders were sent down to the Pharmacy. Thank you friend!!!! Faye told me that she liked going down to the Pharmacy, because while she waited, she went out in the sunshine and warmed up - EVERYONE thinks it is freezing in my hospital room. Here is Faye while she visits :)

Medications  I'll be taking on discharge:

• Neuopogen injections daily to stimulate my bone marrow to mobilize stem cells for 2nd round of stem cell harvest beginning September 6 2011
• Claritin antihistamine which may help to reduce bone pain associated with Neupogen use
• Fragmin injections daily to prevent deep vein thrombosis
• Criprofloxacin antibiotic to prevent infection
• Acyclovir to to prevent shingles
• Fluconazole to prevent fungal injection
• Omeprazole (Prilosec) to treat acid ingestion
• Zofran to treat nausea
• Zantac for acid ingestion
• Ativan for nausea
• Celebrex to treat bone inflammation
• Thalidamide just through Days 2-6 (Day 2 was August 24, Day 3 was August 25, Day 4 August 26, Day 5 August 27, and Day 6 will be August 28)
• Stool softeners and constipation aids as necessary
• L-Glutamine Protein Powder to prevent neuropathy
• Vit. B12, B6 to prevent neuropathy
• Calcium with Vit D3 for osteopenia
• Levothyroxin for low thyroid
• Baclofen for migraine prevention
• Lovastatin for high cholesterol
• Percocet for pain as needed only