Relapsed High-Risk Myeloma Update with CT of Sinuses - April 23 2013

On the road to St. Luke's Hospital, Twin Falls, Idaho at 7 AM - the sun just peeking over Pass Creek. Cold morning with just 24 degrees.

Two antelope crossed in front of me on Highway 93 near the Craters of the Moon.

My lab values were all improved except for my platelets.

White blood cells up, but still low at 2.7 (norms 4.5-11); ANC (absolute neutrophil count) up, but still low at 1.54 (norms 1.9-8.8); hemoglobin up, but still low at 10.6 (norms 12-16); platelets miserable at 38 (norms 140-440); and LDH high at 1516, up from 913 when last tested at St. Luke's (norms 313-618). I haven't been on my chemotherapy since 10 Apr 2013.

I'm still in mild kidney failure with creatinine high at 1.17 (norms 0.52-1.04); BUN high at 20 (norms 7-17); and GFR low at 50 (norms greater than 60). Plus, my total protein was slightly up for the first time to 8.4 (norms 6.3-8.20). 

I had my clinic visit with Dr. Padavanija and RN Kenadi and we decided I would take 10 mg Dex every other day and see how I do with the "ups and downs". I am emotional liable.

I complained of sinus pain especially on the left side over my eye with neck pain. Dr. Padavanija ordered a CT without contrast of my sinuses and they were able to squeeze me right in this afternoon. Results revealed that I have blockage (maybe a tumor of some kind).

I faxed Dr. Padavanija my last sinus surgery report and pathology report from 4 May 2007. I had something very similar in 2007 that was operated on by Dr. Mark Loury in Ft. Collins, Colorado. She wants to refer me to an ENT, but my platelets are too low for any type of intervention - so, we will wait until 9 May 2013 and re-evaluate my platelets.

Back to the infusion center for my monthly 30 mg Aredia intravenously. I took Claritin 10 mg and 500 mg Tylenol to decrease the aches and pain associated with Aredia.

On the road home to Mackay by 2:30 PM - arriving at 5 PM because I was behind the Butte School Bus and had to make many stops. Clark delivered Kemmer and I had an almost 3 hour long nadir.

Travel Home from Denver Colorado to Idaho - April 18 2013

Jani and I got up early and drove to Denver's DIA Airport from Greeley, Colorado. The roads were dry and we were thankful for that.

Called for the wheelchair assist at DIA and had to wait 30 minutes for them - BUT, they did come.

When I went through airport screening,  a lady took me aside and asked me what I had in my chest. I told her a Bard Power Port and she said fine and off I went - she didn't want to see the scar.

The flight was not full and I had no one sitting next to me in Row 2D. 

The Grand Tetons were pretty as we flew by Jackson Hole, Wyoming.

This is the plane I came on. They take your suitcase out of the back and put it on the tarmac for you to pick up - ALL OUTSIDE.

Saw a band of antelope on Highway 20. Taken at 60 miles per hour --- sorry!

 Mt. McCaleb from Highway 93 around Darlington (18 miles away). April 18 2013

Mt. McCaleb from Chevron in Mackay, Idaho. Love our blue skies - 46 degrees with a cold wind April 18 2013.

Clark and Dianne brought Kemmer home and she was exhausted --- we both had a nadir. Glad to be home!

Got on the phone and scheduled an appointment at St. Luke's Hospital in Twin Falls for a packed red blood cell transfusion tomorrow.

Travel from Idaho to Colorado - April 15 2013

Was scheduled to fly from Idaho Falls, Idaho to Denver, Colorado on 15 April at 1 PM or so. My flight was CANCELED due to mechanical issues and United Express called me before I left on the 1 hour 45 minute drive from Mackay to Idaho Falls airport. I thought I was screwed and called the University of Colorado Hospital to see if they could change my appointment scheduled for 16 Apr 2013.

About that time, United Express called me and told me that I was CONFIRMED on the evening United Express flight to Denver tonight. I called UCH back. So, I napped on the sofa until it was time to leave for the Idaho Falls, Idaho Airport. Went with enough time to stop at Taco Bell for dinner. It was spitting snow in Idaho.

Sat in Seat 3D next to a delightful woman from Washington DC who had been booked on the earlier flight too after being diverted from Salt Lake City, Utah - she had already missed her connecting flight --- made my napping on the sofa earlier in the day look pretty good.

The flight went well despite snowy weather. We landed in Denver on a very snowy runway and had to wait out on the tarmac while snowplows cleared almost a foot of snow. I had a window seat and it was interesting to see how they use 12 staggered snowplows to clear the runways.

I wore my N-95 mask the whole trip. I was picked up at the plane with a wheelchair assist and taken all the way to the 6th Floor EAST, Door 613 (involves going length of B-Concourse, a ride on the DIA Train, and then going around in Concourse A to the outside door) where Jani picked me up. It took her an extra hour to get the airport in the snowstorm. Then, just to give Jani's PATIENCE a workout, we and a lot of other people that were behind 2 snowplows on US85 going 20 miles per hour with no opportunity to pass for more than half the trip to Greeley. Didn't get to Greeley until about 11:15 PM...but, we got here!

Bone Marrow Biopsy Number 10 - February 20 2013

Had a better week in regard to my gastritis and energy level. I'm not sure what, if anything, was different other than the intravenous Aloxi I received on the first day of carfilzomib on 13 Feb 2013. Continue to have trouble with everything going SOUTH rapidly, and took 1/2 Imodium on Feb 18 2013 which almost instantly made me TIRED and cloudy-of-mind.

When I have pain, I started taking ¼ tablet of Percocet (5/325) instead of plain Tylenol since my liver enzyme is up. ¼ tablet only contains 81.25 mg of Tylenol (acetaminophen) which is better than the 500 mg I was taking. I do not like taking narcotics – they seem to interfere with my sleep. However, I have to take something for the pain in my left hip.

Was able to walk Kemmer a couple of times. 1.24 miles on Feb 16 2013; 1.37 miles Feb 17 2012, and 0.82 miles on 18 Feb 2013.

Kemmer thanking the Szabo's for her Valentine Card Feb 16 2013

Walk 0.82 miles on 18 Feb 2013.

Held my Fragmin Injection 15,000 units 19 Feb 2013 in preparation for the bone marrow biopsy 20 Feb 2013.

Drove to Twin Falls, Idaho is a driving snow storm in the DARK with Lana. Had trouble finding the road sometimes and didn't see any deer or elk. Arrived just before 8:30 AM and went to the Infusion Area to have my Bard Power Port accessed and my SPEP (M Spike, Free Light Chains, Protein, Immunoglobulins), CBC, and Chem Panel Labs drawn.  

My white blood cell count was low at 1.9 (norms 4.5-11); absolute neutrophil count (ANC) was low at 1.12 (norms 1.9-8.8); hemoglobin low at 10.2 (norms 12-15); and platelets low at 100 (norms140-440). I think all of my values were slightly higher than they REALLY WERE since I was dehydrated from being NPO since midnight (over 8 hours).

LDH was 509 (norms 313-618) and up from my 13 Feb 2013 value of 460.

My creatinine was slightly high at 1.06 (norms 0.52-1.04); my BUN/CR Ratio was slightly low at 9 (norms 10-20); and my GFR was normal at 56 (abnormal >60). Again, I think these values were influenced by being dehydrated from being NPO since midnight (over 8 hours).

From the Cancer Center, we went over to Interventional Radiology for my 10th Bone Marrow Biopsy and my second one with conscious sedation.  Lana went with me to drive me home and it was great - we laughed a lot.

I had the same nurse, RN Mendi, as last December and everything was familiar. This picture was taken before any drugs were given and you can see my "tired look" of late.

Kirk Peterson, MD from pathology and his assistant, April, came and I greeted them. After that I don't remember a thing thanks to conscious sedation with Versed 5 mg and Fentanyl 100 mcg. Dressing over the bone marrow biopsy site on my right iliac crest and I have no pain a the site.

My Bard Power Port always "oozes" a tad after they take the Huber Needle out.

Lana drove me home - it was surreal in that the roads were completely dry and ALL the blizzard snow (3-4 inches) was GONE and DRIED UP as we drove home from 11:30 AM to 2 PM.

Had a long nadir and went to bed at 7 PM. Woke at 10:30 PM with a severe gut ache - took 1/2 Percocet, Zantac, and Senna-S which seemed to help.

Cycle 4 Week 3 Day 2 Carfilzomib/Dex and Day 16/21 Revlimid 10 mg - February 14 2013

Couldn't sleep at all in the motel overnight because of the Dex 20 mg. Finally, at 2 AM just turned on the lights and worked on my computer until morning. Almost forgot to put my EMLA Cream on my Bard Power Port...I am such a weanie - I think I'm the only patient they have that uses EMLA.

Checked out of the motel and went to Walmart to buy bottled water - Nestle PureLife, which according to Consumer's Reports is one of the few bottled waters that is actually purified using reverse osmosis or distillation and not "just water in a bottle". Because of my non-existent immunoglobulins after  2 failed autologous stem cell transplants and abnormally low ANC (absolute neutrophil count), I am careful to drink only Nestle's PureLife water.

Arrived for my Infusion appointment right on time at 8 AM. Took the nurses some chocolate candy for Valentine's Day. 

RN Brittany was able to access my Bard Power Port and hurried my carfilzomib preparation from pharmacy. I took 4 mg of Dex orally. Was in and out in just over an hour. 

On the road back to Mackay from Twin Falls. Lots of traffic in the opposite direction with 10 hay hauling trucks and a steady stream of cars from Custer (Challis and Mackay) and Butte (Arco) Counties heading to Boise for the High School Girl's Basketball State Tournament today through Saturday. All three high schools qualified for the tournament. Challis and Butte County are in a Bracket ahead of Mackay. The games will be shown FREE on the internet and I plan to watch!

The injured elk was gone and in her place were BIG, temporary signs with orange flags warning of Wild Life Crossing on Highway 93 South and North.

Stopped to visit my father and then went to pick up Kemmer. 35 degrees and clear blue skies - WELCOME HOME. Snow is melting.

Home and one-with-the-sofa for a nice nadir. 

I email Clay Smith, MD (University of Colorado Hospital) and Raphael Fonseca, MD (Mayo-Scottsdale Arizona) each week with a summary of my lab values, chemotherapy received, and basically how I feel. They have been wonderful in responding back to me with their suggestions for my continued care directed by Phatama Padavanija, MD (St. Luke's Hospital, Twin Falls, Idaho). Dr. Smith thinks I definitely need to a MRI of my left hip and pelvis to look for a fracture and/or tumor since it hurts to lay on my left side...wants me to take less Tylenol and start on narcotic in low doses since my liver enzyme is high. He also thinks I should see a gastrointestinal doctor and perhaps have an upper endoscopy to look for an ulcer or other problem in my GI tract since I've had prolonged gastritis. I'll work on getting these scheduled through Dr. Padavanija, however, she is on vacation through 26 Feb 2013. I'm so lucky to have such a good team, especially since I live so remotely in Idaho!

Will start back on Cytoxan at a lesser dosage (300 mg vs 500 mg) for Cycle 5 beginning 27 Feb 2013....my poor hair will never grow. Stick with Revlimid 10 mg for Cycle 5. I'm not excited to take Cytoxan again it really lowered my counts and I was SOOOO TIRED while on it. 

Of course, this might change depending on my next bone marrow biopsy results being done next week under conscious sedation on 20 Feb 2013. My last percentage of plasma cells in my bone marrow biopsy done 20 Dec 2012 was 40%, so, I'm hoping for less than that  this go around. Should have partial results of the bone marrow biopsy by 27 Feb 2013 and the cytogenetics will probably take a bit longer. However, I don't expect any change in the cytogenetics 4:14 and 1q changes since they have been PERSISTENT through the last 9 bone marrow biopsies.

Bone Marrow Biopsy History:

1. 24 May 2011 (Diagnosis at Dr. Moore in Ft. Collins, Colorado; traditional trocar)
2. 20 Aug 2011 (1st at UCH with Glen, NP; traditional trocar)
3. 1 Sept 2011 (Karley, NP, UCH, traditional trocar)
4. 2 Nov 2011  (Karley, NP, UCH, tradition trocar)
5. 9 Mar 2012  (Karley, NP and 1st with OnControl Driver, UCH)
6. 3 May 2012 (Shannon, NP with OnControl Driver, UCH)
7. 12 July 2012 (Trish, NP with OnControl Driver UCH)
8. 17 Oct 2012 (Angela, NP with OnControl Driver UCH)
9. 20 Dec 2012 (Kirk Peterson, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
10. 20 Feb 2013 (Kirk Peterson, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar

Cycle 4 Week 2 Day 2 Carfilzomib/Dex and Day 9/21 Revlimid 10 mg - February 7 2013

Woke this morning in the Twin Falls motel with quite bruise over my Bard Power Port. The area doesn't hurt as much as I thought it would.

Put EMLA cream on and went to St. Luke's Hospital Infusion Center for my 2nd day of Carfilzomib/Dex. I forgot my non-stick pads for the ELMA cream and ended up covering the EMLA with a mask...hoping it would work.

The EMLA worked and RN Letia got right in with a 1 inch Huber needle vs the 3/4 inch needle used yesterday. They used one of the white padded Huber needles that I'm allergic to, but because it was 1 inch it stood above my skin a tad and they put gauze in the space.

Received my carfilzomib 27 metered square dosage and took 4 mg dex orally.

On the road home to Mackay by 9:10 AM. No fog this trip and that was nice...and the hay hauling trucks were clearly visible.

Craters of the Moon covered with snow. Feb 7 2013.

Feeding horses along Highway 93 on the way to Mackay Idaho Feb 7 2013

Home around 11:20 AM  28 degrees and partly cloudy. Then, I went to get Kemmer and had a take our hamburger from the Mine Hill Grill - yum.

Summary January 23 to January 24 2013

Pretty tired all day Wednesday, 23 Jan 2013. Tired to conserve my energy so I could enjoy a get-together that Jani and Robbyn planned for me from 4-6 PM. They invited people I used to work with at the University of Northern Colorado and former neighbors to come to the house. We had lots of snacks and 18 guests in the end. I wore a mask since my Absolute Neutrophil Count (ANC) was just 1.0. I enjoyed myself - but, I was worn out afterwards.

Thursday morning, Jan 24 2013, Jani drove me to the Denver International Airport (DIA) where I, again, used United Airlines assistance (wheelchair) from the curb, through security to the gate on B Concourse. Even though I arrived 2 hours before my flight, I only arrived at Gate B-93 just in time to buy a sandwich and board the plane - a CRJ200 Canadair Regional Jet with seating 2 x 2. I had seat 3A. Unlike my flight to Denver on Monday, this flight was full of people coughing and sneezing - I wore my N-95 mask the ENTIRE TIME and used my hand sanitizer liberally, so I hope I didn't pick anything up.

DIA from the plane.

 

As we took off from DIA, the flight was VERY BUMPY and I tried to "imagine" myself somewhere else which worked pretty well. Finally climbed out of the bumps and the rest of the flight was pretty smooth.

Over Idaho Falls, Idaho just before we landed - 33 degrees and cloudy.

Drove the 100 miles home to Mackay, Idaho - sunny in the Big Lost River Valley in stark contrast with Idaho Falls.

Stopped at my father's house to pick up my mail and say hi. He does fine without me.

Friends, Clark and Dianne (Layne) Parker brought Kemmer home - she was exhausted from her fun visit with the Parker's. It was so nice of them to keep her.

I was tired, but GLAD to be home!

Summary January 19 to January 21 2013

Working hard on my Mackay Idaho blog and getting the housework done along with the laundry. I like laundry for some dumb reason.

It finally warmed up a tad here in Mackay and when the mercury hit almost 20 degrees, I walked Kemmer to the Mackay City Limit and back (0.82 miles).

I continue tired and not sleeping well, trying to fight fatigue with activity. On Sunday, I walked Kemmer again, but we only went 0.54 miles right here in the neighborhood. My typical day of late is to get the mail for my father at the Post Office, visit with him and head home to the sofa.

On Martin Luther King Day, January 21 2013, I left from the Idaho Falls Airport for DIA - Denver, Colorado on United Express. I have a 3-month follow-up appointment with Clay Smith, MD at the University of Colorado Hospital on January 22 2013.

I arrived 2 hours early for my flight because I read the ticket incorrectly - can you say CHEM BRAIN.... I wore a N-95 mask and don't you think it is a miracle that I can see through those dirty reading glasses???

It was just 4 degrees when we took off.

Denver's famous brown cloud, January 21 2013. Even though I'm a gazillion miles from health care living in Idaho - it has to be better for me than this air!

 DIA from the air January 21 2013

I asked for assistance (wheelchair) at the B93 gate to the Main DIA  Concourse via the train system and I'm so glad I did. I think I could have walked dragging my suitcase and backpack, but it might have taken me 3 hours. Thank you DIA for the nice ride.

Jani met me on the curb outside DIA on her first pass - so, it was just perfect. Wonderful to see my sister again. I was a bit dehydrated since it is HARD to drink with a mask on, so I made up for it this evening. Jani and Robbyn made me a steak, broccoli, and yam dinner - yummy.