Relapsed High Risk Myeloma - Update August 6 2013

I was supposed to go to get my blood checked in Arco, Idaho this morning, but decided not to. We are going the day after tomorrow to St. Luke's Hospital in Twin Falls and I will have it checked, then. I'm betting my platelets are okay, but I might need another packed red blood cell transfusion as I'm a tad out of breath with even easy walking.

We decided to go to the old, restored, Shay Engine Trestle Bridge today. Jeff drove my 4-wheeler up to the beginning of the trail, while Jani and I went in Jonah (1999 Honda Passport) with the dogs. We have wanted to do this all summer.

Jani and Jeff walked the trail and I rode SLOWLY along on the Shay Trestle Road on JackRedToo (2012 Honda Rancher 4-wheeler). We stopped along the way and used the tow strap tied to JackRedToo to look for rocks.

 Shay Trestle Bridge which was restored 9 July 2002.

Our Lewis and Clark pose! (below)/

Transcription of sign, which is difficult to read in the above photo. 

"The original trestle was constructed about 1901 by the White Knob Mining Company using timbers but at nearby sawmills. It was part of the company’s electric railroad system used to shuttle ore and supplies between the mines and the smelter near the river below, and spans 105 feet and is 25 feet tall as it crosses the gulch.

The mountain railroad covered about 7 miles, its 36-inch tracks witch-backing across the face of  the mountain at a 6% grade. Initially, the trestle supported only the load of electric motor engines and ore cars, but in 1905 the heavier more powerful coal-fired Shay locomotives were put into service, individuals weighing over 30 tons. Although the structure was up the its new loads, its purpose was short lived as the entire rail system gave way to the gravity aerial tramway in 1908. By 1920, the tracks had all been taken up and the entire roadbed, including the trestle was being used as a scenic automobile route.

Much of the old railroad right-of-way and  its trestle have remained a popular route for local and visiting hikers, hunters, site-seers, horsemen, ATV’ers and  even bikers competing in Mackay’s annual mountain bike race. The trestle has seen a number of miner repairs through the years but was condemned in 1995 and underwent a major renovation in 2002. The rebuilt trestle includes  a traffic restriction to all vehicles  over 50 inches wide and a cable side railing for safety."

 I rode JackRedToo with Kemmer home.

I did well on the 4 hour trip except my legs are so weak, I needed help from Jeff and Jani getting on and off JackRedToo. I've just lost all the strength in my thigh muscles and knees. We had a great time - siblings x 3.

Came home and had a nadir after lunch.

Jani went golfing with Helen Marinac after she made dinner (homemade tacos). The skies were clouded with some forest fire smoke, but for the most part that did not bother me at all. I wore a N-95 mask on the way home. Kemmer still loves riding along.

Relapsed High Risk Myeloma - Update June 18 2013

Did not sleep well last night, woke with left calf spasm and took 1/4 pain pill which seems to be hanging me over this morning.

Jani drove me to Lost Rivers Medical Center Lab in Arco, Idaho to have my CBC (complete blood count) done this morning. My white blood cell count fell from 2.7 to 2.0 (norms 4.5-11); ANC (absolute neutrophil count) and fell from 1.82 to 1.11 (norms 1.9-8.8). So, I probably should avoid hugging others for a while.

My hemoglobin is about the same as it was last week (8.2) before I had at transfusion of one unit of packed red blood cells at 8.5 today (norms 12-16). My platelets actually increased a TINY BIT from 28 to 33 (norms 140-440). Will continue to hold my aspirin 81 mg dose due to low platelets.

I'm not experiencing any shortness of breath with walking slowly right now, so decided that I did not need another transfusion of packed red blood cells today. 

Still need to be super careful with such a low platelet count.that I don't do anything that might cause me to bleed.

Will call triage nurse at St. Luke's Hospital in Twin Falls, Idaho if I develop any symptoms of severe low hemoglobin (oxygen carrying cells) or bleed from low platelets over the next week. My next appointment is not until Wednesday, 26 June 2013 for labs, and a bone marrow biopsy under conscious sedation. 

During my 1st Cycle of Bendamustine/Revlimid/Dex, my blood values stopped falling about 2 1/2 weeks after it was given and I'm on Day 15 of Cycle 2 today. Hence, I don't expect my blood values to drop much more for this 2nd Cycle.

My on-again to STOPPED gastrointestinal tract is on-again today. I never know, but glad to not be on the road to Twin Falls with it on-again right now.

A friend with myeloma as relapsed and that's not good news.

Relapse: Holding Pomalidomide In Cycle 2 for Low Platelets - April 12 2013

Slept pretty good last night.

Took the last of the Dex 10 mg to make 40 mg for the week this morning - craving sugar. Will be interesting to see how I feel over the weekend as I come off all the dex. I don't start the next 40 mg again until next Tuesday, 16 Apr 2013.

Drove to Lost Rivers Medical Center in Arco, Idaho and had my complete blood count drawn.

My white blood cell count is up a tad, but  is still low at 2.6 (norms 4.5-11); absolute neutrophil count (ANC) up, but still low at 1.36 (norms 1.9-8.8); hemoglobin way up to 9.3 (from the blood transfusion 10 Apr 2013), but still too low (norms 12-16); platelets still too low at 46 (norms 140-440). 

I'm still a bit breathless with walking and wondering if I might have a sinus infection beginning.

RN Rhonda called from St. Luke's Hospital in Twin Falls after she got the results and told me that Dr. Padavanija wants me to HOLD the pomalidomide (Pomalyst) until my platelet count climbs above 50. I won't have my blood checked again until 16 Apr 2013. So, I am still in RELAPSE and have been in relapse for 1 full year now.